1 00:00:05,000 --> 00:00:09,920 >>GOOD MORNING, EVERYBODY. 2 00:00:09,920 --> 00:00:11,400 IT'S 8:59. 3 00:00:11,400 --> 00:00:13,320 I THINK WE SHOULD GET STARTED 4 00:00:13,320 --> 00:00:13,760 FOR THE DAY. 5 00:00:13,760 --> 00:00:18,560 WE HAVE A LONG DAY, WE HAVE A 6 00:00:18,560 --> 00:00:19,560 FULL DAY. 7 00:00:19,560 --> 00:00:23,160 LIKE YESTERDAY, TODAY WE WILL 8 00:00:23,160 --> 00:00:27,000 START WITH TALKS ON SICKLE CELL 9 00:00:27,000 --> 00:00:29,720 DISEASE SURVEILLANCE SYSTEMS AND 10 00:00:29,720 --> 00:00:33,760 THEN WE WILL GO TO 11 00:00:33,760 --> 00:00:39,120 IMPLEMENTATION AND ON FOR OTHER 12 00:00:39,120 --> 00:00:42,240 TALKS FOR SYMPOSIUM 3 AND 4. 13 00:00:42,240 --> 00:00:47,880 SO WITHOUT ANY FURTHER DELAYS, I 14 00:00:47,880 --> 00:00:58,040 WILL ASK ALEX TO GIVE US SOME 15 00:00:58,040 --> 00:00:59,360 LOGISTICS, QUICKLY SHE'S GOING 16 00:00:59,360 --> 00:01:00,880 TO GO OVER LOGISTICS IN A MINUTE 17 00:01:00,880 --> 00:01:02,880 OR SO, AND THEN AFTER THAT, WE 18 00:01:02,880 --> 00:01:05,600 WILL GET STARTED. 19 00:01:05,600 --> 00:01:07,120 DR. MARY HULIHAN IS GOING TO 20 00:01:07,120 --> 00:01:11,040 START THE SESSION. 21 00:01:11,040 --> 00:01:11,240 ALEX? 22 00:01:11,240 --> 00:01:12,280 >> THANK YOU. 23 00:01:12,280 --> 00:01:15,080 WELCOME TO DAY TWO. 24 00:01:15,080 --> 00:01:16,640 WE HOPE YOU ENJOYED YESTERDAY. 25 00:01:16,640 --> 00:01:19,720 WE DO WANT TO GO OVER A FEW 26 00:01:19,720 --> 00:01:20,480 HOUSEKEEPING THROUGHOUT THE 27 00:01:20,480 --> 00:01:22,320 DURATION OF THE WORKSHOP. 28 00:01:22,320 --> 00:01:23,760 ATTENDEES SHOULD HAVE RECEIVED A 29 00:01:23,760 --> 00:01:26,040 UNIQUE LOG-IN FOR ATTENDEES 30 00:01:26,040 --> 00:01:27,880 SPECIFICALLY THIS MORNING. 31 00:01:27,880 --> 00:01:29,360 YOU CAN USE THAT ALL THREE DAYS 32 00:01:29,360 --> 00:01:31,480 OF THE WORKSHOP. 33 00:01:31,480 --> 00:01:32,600 WITH THAT BEING SAID, THIS 34 00:01:32,600 --> 00:01:34,120 MEETING IS BEING RECORDED. 35 00:01:34,120 --> 00:01:35,760 IF YOU DO NEED CLOSED 36 00:01:35,760 --> 00:01:36,880 CAPTIONING, IT'S LOCATED AT THE 37 00:01:36,880 --> 00:01:38,160 BOTTOM OF YOUR SCREEN. 38 00:01:38,160 --> 00:01:40,360 PLEASE CLICK ON "LIVE 39 00:01:40,360 --> 00:01:42,760 CAPTIONING," THEN CLICK ON" SHOW 40 00:01:42,760 --> 00:01:43,160 SUBTITLES." 41 00:01:43,160 --> 00:01:45,080 WE DO ASK ATTENDEES INTERACT 42 00:01:45,080 --> 00:01:45,960 THROUGHOUT THE WORKSHOP. 43 00:01:45,960 --> 00:01:48,280 WITH THAT BEING SAID, WE HAVE A 44 00:01:48,280 --> 00:01:50,200 Q & A BOX AT THE BOTTOM OF THE 45 00:01:50,200 --> 00:01:51,400 SCREEN IF YOU WOULD LIKE TO ASK 46 00:01:51,400 --> 00:01:53,280 QUESTIONS TO SPEAKERS, PLEASE 47 00:01:53,280 --> 00:01:54,240 INPUT YOUR QUESTIONS THERE. 48 00:01:54,240 --> 00:01:56,680 IF YOU WOULD LIKE TO HAVE CHAT 49 00:01:56,680 --> 00:01:58,080 OR CONVERSATION, PLEASE USE THE 50 00:01:58,080 --> 00:01:59,840 CHAT BOX FOR THAT. 51 00:01:59,840 --> 00:02:01,160 ONCE AGAIN, THIS MEETING IS 52 00:02:01,160 --> 00:02:03,120 BEING RECORDED. 53 00:02:03,120 --> 00:02:04,680 IF YOU DO HAVE ANY QUESTIONS, 54 00:02:04,680 --> 00:02:07,400 PLEASE REACH OUT TO ME. 55 00:02:07,400 --> 00:02:10,440 I WILL BE HERE THROUGHOUT THE 56 00:02:10,440 --> 00:02:11,200 DURATION ONLINE. 57 00:02:11,200 --> 00:02:13,720 ONCE AGAIN, IF YOU HAVE ANY 58 00:02:13,720 --> 00:02:14,600 QUESTIONS, PLEASE REACH OUT. 59 00:02:14,600 --> 00:02:16,680 WE DO ASK THAT ALL ATTENDEES 60 00:02:16,680 --> 00:02:21,280 REMAIN MUTED AND KEEP THEIR 61 00:02:21,280 --> 00:02:22,920 CAMERAS OFF AND WE HOPE YOU 62 00:02:22,920 --> 00:02:23,800 ENJOY DAY 2. 63 00:02:23,800 --> 00:02:24,320 THANK YOU. 64 00:02:24,320 --> 00:02:25,880 >> THANK YOU, ALEX. 65 00:02:25,880 --> 00:02:29,160 AND I WILL NOW HAND OVER THE 66 00:02:29,160 --> 00:02:33,240 SESSION TO DR. HULIHAN. 67 00:02:33,240 --> 00:02:34,920 >> THANK YOU SO MUCH, AND THANK 68 00:02:34,920 --> 00:02:36,800 YOU FOR THE KIND INVITATION TO 69 00:02:36,800 --> 00:02:38,120 BE HERE AND SPEAK WITH YOU 70 00:02:38,120 --> 00:02:38,320 TODAY. 71 00:02:38,320 --> 00:02:40,840 WE'RE REALLY EXCITED TO SHARE 72 00:02:40,840 --> 00:02:42,840 WITH YOU SOME INFORMATION ABOUT 73 00:02:42,840 --> 00:02:44,280 OUR SICKLE CELL DATA COLLECTION 74 00:02:44,280 --> 00:02:49,160 PROGRAM, OUR SURVEILLANCE SYSTEM 75 00:02:49,160 --> 00:02:51,040 FOR SCDC AND WE'RE GOING TO HAVE 76 00:02:51,040 --> 00:02:54,400 A NUMBER OF PRESENTERS TODAY. 77 00:02:54,400 --> 00:02:55,960 I'M NOT SURE IF YOU CAN PULL UP 78 00:02:55,960 --> 00:02:56,960 MY SLIDES? 79 00:02:56,960 --> 00:02:58,440 WONDERFUL, AND GO TO THE NEXT 80 00:02:58,440 --> 00:02:58,920 SLIDE, PLEASE. 81 00:02:58,920 --> 00:03:00,200 SO A QUICK OVERVIEW OF THE 82 00:03:00,200 --> 00:03:01,760 PROGRAM. 83 00:03:01,760 --> 00:03:02,760 THAT WE'LL BE SHARING 84 00:03:02,760 --> 00:03:04,920 INFORMATION FROM TODAY. 85 00:03:04,920 --> 00:03:06,400 THIS IS A COOPERATIVE AGREEMENT 86 00:03:06,400 --> 00:03:10,600 THAT IS FUNDED THROUGH THE 87 00:03:10,600 --> 00:03:11,800 CENTERS FOR DISEASE CONTROL AND 88 00:03:11,800 --> 00:03:13,360 PREVENTION AND WE CURRENTLY HAVE 89 00:03:13,360 --> 00:03:14,560 11 STATES PARTICIPATING IN THE 90 00:03:14,560 --> 00:03:14,880 PROGRAM. 91 00:03:14,880 --> 00:03:16,480 YOU CAN SEE THEM LISTED THERE ON 92 00:03:16,480 --> 00:03:18,360 THE RIGHT, AND ALL OF THE STATES 93 00:03:18,360 --> 00:03:20,440 ARE COLLECTING DATA. 94 00:03:20,440 --> 00:03:25,040 THEY ARE PRESENTING AND PULLING 95 00:03:25,040 --> 00:03:25,720 TOGETHER AGGREGATE INFORMATION, 96 00:03:25,720 --> 00:03:26,800 ALL OF WHICH IS GOING TO BE 97 00:03:26,800 --> 00:03:28,120 AVAILABLE ON OUR WEBSITE VERY 98 00:03:28,120 --> 00:03:29,120 SOON. 99 00:03:29,120 --> 00:03:31,200 AND ACROSS THOSE 11 STATES BASED 100 00:03:31,200 --> 00:03:32,400 ON THE U.S. CENSUS DATA, WE 101 00:03:32,400 --> 00:03:34,120 THINK THAT THERE'S APPROXIMATELY 102 00:03:34,120 --> 00:03:36,000 A THIRD OF THE U.S. SICKLE CELL 103 00:03:36,000 --> 00:03:37,640 DISEASE POPULATION. 104 00:03:37,640 --> 00:03:40,440 FIVE OF THESE 11 STATES ARE ALSO 105 00:03:40,440 --> 00:03:43,280 FUNDED TO DO ADDITIONAL ANALYSES 106 00:03:43,280 --> 00:03:44,360 AND THAT'S WORK THAT'S GOING TO 107 00:03:44,360 --> 00:03:50,640 BE SHARED WITH YOU TODAY. 108 00:03:50,640 --> 00:03:52,520 SO JUST A QUICK OVERVIEW AND NOT 109 00:03:52,520 --> 00:03:54,560 TO GO INTO TOO MUCH DETAIL ABOUT 110 00:03:54,560 --> 00:03:56,320 THIS, BUT A REMINDER THAT THIS 111 00:03:56,320 --> 00:03:58,600 IS A SURVEILLANCE SYSTEM AND SO 112 00:03:58,600 --> 00:04:00,480 THE INFORMATION THAT WILL BE 113 00:04:00,480 --> 00:04:01,560 PRESENTED TODAY COMES FROM A LOT 114 00:04:01,560 --> 00:04:03,440 OF DIFFERENT DATA SOURCES THAT 115 00:04:03,440 --> 00:04:04,960 IS ALL LINKED TOGETHER. 116 00:04:04,960 --> 00:04:06,760 YOU CAN SEE THOSE DATA SOURCES 117 00:04:06,760 --> 00:04:07,720 LISTED HERE. 118 00:04:07,720 --> 00:04:09,240 SOME OF THE ANALYSES THAT ARE 119 00:04:09,240 --> 00:04:10,640 PRESENTED USE SOME OF THESE DATA 120 00:04:10,640 --> 00:04:11,760 SOURCES, SOME USE ALL OF THEM, 121 00:04:11,760 --> 00:04:13,200 BUT THE SPEAKERS WILL SHARE WITH 122 00:04:13,200 --> 00:04:14,120 YOU WHICH ARE THE SOURCES FOR 123 00:04:14,120 --> 00:04:15,960 THE INFORMATION THEY'RE 124 00:04:15,960 --> 00:04:17,120 PROVIDING. 125 00:04:17,120 --> 00:04:17,960 SO TODAY'S PRESENTATIONS ARE 126 00:04:17,960 --> 00:04:21,360 GOING TO COVER A WIDE VARIETY OF 127 00:04:21,360 --> 00:04:22,640 TOPICS ALL OF WHICH ARE 128 00:04:22,640 --> 00:04:23,880 REFLECTED ON THE SLIDES YOU JUST 129 00:04:23,880 --> 00:04:24,240 SAW. 130 00:04:24,240 --> 00:04:27,840 WE'RE GOING TO START WITH THE 131 00:04:27,840 --> 00:04:30,160 SCDC MODERNIZATION AND MOVE TO 132 00:04:30,160 --> 00:04:31,320 NORTH CAROLINA, TALK ABOUT 133 00:04:31,320 --> 00:04:32,080 HEALTHCARE UTILIZATION. 134 00:04:32,080 --> 00:04:33,160 CALIFORNIA IS GOING TO SHARE 135 00:04:33,160 --> 00:04:34,520 INFORMATION ABOUT ACCESS TO 136 00:04:34,520 --> 00:04:34,920 HEALTHCARE. 137 00:04:34,920 --> 00:04:36,160 THE MICHIGAN TEAM IS GOING TO 138 00:04:36,160 --> 00:04:38,440 TALK ABOUT HOW THEY'RE USING THE 139 00:04:38,440 --> 00:04:40,160 DATA TO IMPROVE HEALTHCARE 140 00:04:40,160 --> 00:04:42,720 POLICY, AND THEN WE'LL CLOSE OUT 141 00:04:42,720 --> 00:04:43,600 WITH GEORGIA TALKING ABOUT SOME 142 00:04:43,600 --> 00:04:46,000 OF THE WORK WE'VE DONE TO LINK 143 00:04:46,000 --> 00:04:48,280 THIS SURVEILLANCE DATA WITH 144 00:04:48,280 --> 00:04:49,360 COVID-19 DATA SYSTEMS. 145 00:04:49,360 --> 00:04:50,600 THEN WE'LL HAVE TIME AT THE END 146 00:04:50,600 --> 00:04:56,040 FOR SOME QUICK Q & A. 147 00:04:56,040 --> 00:04:58,040 SO JUST A QUICK REMINDER, WE 148 00:04:58,040 --> 00:04:59,080 HAVE JUST POSTED A NEW 149 00:04:59,080 --> 00:05:00,080 FORECASTED FUNDING OPPORTUNITY. 150 00:05:00,080 --> 00:05:04,800 YOU CAN GO TO GRANTS.GOV AND 151 00:05:04,800 --> 00:05:06,120 FIND IT THERE. 152 00:05:06,120 --> 00:05:08,400 AND IF YOU'D LIKE TO STAY UP TO 153 00:05:08,400 --> 00:05:10,280 DATE ON THE HAPPENINGS OF THIS 154 00:05:10,280 --> 00:05:11,800 PROGRAM, WE HAVE A QUARTERLY 155 00:05:11,800 --> 00:05:15,080 NEWSLETTER THAT YOU CAN 156 00:05:15,080 --> 00:05:18,360 SUBSCRIBE TO, IT'S ON THE 157 00:05:18,360 --> 00:05:19,800 WEBPAGES, THERE'S A QUICK LINK 158 00:05:19,800 --> 00:05:21,080 TO SUBSCRIBE YOU AND YOU'LL GET 159 00:05:21,080 --> 00:05:22,720 UPDATES DELIVERED TO YOUR INBOX 160 00:05:22,720 --> 00:05:23,240 EVERY QUARTER. 161 00:05:23,240 --> 00:05:25,960 SO WITH THAT, I THINK WE CAN 162 00:05:25,960 --> 00:05:29,960 MOVE OVER TO DR. HANKINS WITH 163 00:05:29,960 --> 00:05:31,480 THE TENNESSEE TEAM. 164 00:05:31,480 --> 00:05:33,640 >> THANK YOU, DR. HULIHAN, AND 165 00:05:33,640 --> 00:05:39,680 THANK YOU, FOR THE INTRODUCTION. 166 00:05:39,680 --> 00:05:41,000 I AM GOING TO SHARE MY SCREEN 167 00:05:41,000 --> 00:05:45,920 AND BEGIN MY PRESENTATION. 168 00:05:45,920 --> 00:05:49,000 I AM GOING TO DISCUSS -- CAN YOU 169 00:05:49,000 --> 00:05:50,000 SEE MY SLIDES? 170 00:05:50,000 --> 00:05:51,040 >> YES, WE CAN. 171 00:05:51,040 --> 00:05:52,160 >> OKAY, THANK YOU. 172 00:05:52,160 --> 00:05:55,320 SO I WILL DISCUSS THE DATA 173 00:05:55,320 --> 00:05:58,480 MODERNIZATION IN OUR APPROACH TO 174 00:05:58,480 --> 00:06:00,120 BUILDING A SURVEILLANCE PROGRAM. 175 00:06:00,120 --> 00:06:02,120 SO I WILL BEGIN BY DISCUSSING 176 00:06:02,120 --> 00:06:05,240 THE GAPS IN HAVING BIG DATA IN 177 00:06:05,240 --> 00:06:07,240 SICKLE CELL DISEASE. 178 00:06:07,240 --> 00:06:09,120 OUR CURRENT APPROACHES TO THE 179 00:06:09,120 --> 00:06:09,880 MODERNIZATION IN SICKLE CELL 180 00:06:09,880 --> 00:06:13,480 DISEASE USING SURVEILLANCE. 181 00:06:13,480 --> 00:06:15,120 WHY WE NEED A SICKLE CELL DATA 182 00:06:15,120 --> 00:06:16,000 COLLECTION SURVEILLANCE PROGRAM, 183 00:06:16,000 --> 00:06:19,600 AND HOW WE ARE APPROACHING 184 00:06:19,600 --> 00:06:21,040 SURVEILLANCE IN FUTURE 185 00:06:21,040 --> 00:06:21,800 DIRECTIONS. 186 00:06:21,800 --> 00:06:25,640 SO ALTHOUGH ALL 50 STATES IN THE 187 00:06:25,640 --> 00:06:28,120 UNITED STATES DO HAVE NEWBORN 188 00:06:28,120 --> 00:06:30,560 SCREENING, IT'S UNIVERSAL, VERY 189 00:06:30,560 --> 00:06:33,720 FEW STATES ARE USING THE 190 00:06:33,720 --> 00:06:36,880 EPIDEMIOLOGIC DATA THAT THE 191 00:06:36,880 --> 00:06:38,080 NEWBORN SCREENING PROVIDES, AND 192 00:06:38,080 --> 00:06:39,640 WE ALSO HAVE GOVERNMENT FUNDED 193 00:06:39,640 --> 00:06:40,840 PROGRAMS SUCH AS MEDICAID AND 194 00:06:40,840 --> 00:06:42,040 MEDICARE THAT HAVE A WEALTH OF 195 00:06:42,040 --> 00:06:44,000 DATA THAT IS CURRENTLY BEING 196 00:06:44,000 --> 00:06:46,520 UNDERUTILIZED FOR RESEARCH AND 197 00:06:46,520 --> 00:06:49,040 OTHER EPIDEMIOLOGICAL PURPOSES. 198 00:06:49,040 --> 00:06:51,880 AND WHAT THAT RESULTS IS THAT WE 199 00:06:51,880 --> 00:06:54,280 REALLY DO NOT HAVE A 200 00:06:54,280 --> 00:06:56,040 POPULATION-LEVEL DATA FOR SICKLE 201 00:06:56,040 --> 00:06:57,560 CELL DISEASE, WHICH REALLY 202 00:06:57,560 --> 00:06:59,400 IMPAIRS OUR ABILITY TO CALCULATE 203 00:06:59,400 --> 00:07:02,160 DISEASE PREVALENCE, DELIVERY OF 204 00:07:02,160 --> 00:07:03,800 EVIDENCE-BASED CARE, AND 205 00:07:03,800 --> 00:07:05,800 HEALTHCARE UTILIZATION IN THE 206 00:07:05,800 --> 00:07:07,520 UNITED STATES. 207 00:07:07,520 --> 00:07:09,240 THERE ARE CURRENT APPROACHES TO 208 00:07:09,240 --> 00:07:11,800 BIG DATA IN SICKLE CELL DISEASE 209 00:07:11,800 --> 00:07:12,240 CURRENTLY. 210 00:07:12,240 --> 00:07:14,640 FOR EXAMPLE, THERE ARE 211 00:07:14,640 --> 00:07:16,920 ELECTRONIC HEALTH RECORD 212 00:07:16,920 --> 00:07:19,520 COLLABORATIVES SUCH AS THE ASH 213 00:07:19,520 --> 00:07:20,880 DATA HUB THAT YOU WILL HEAR 214 00:07:20,880 --> 00:07:23,720 LATER THIS MORNING, THERE ARE 215 00:07:23,720 --> 00:07:24,560 MULTI-REGISTRY DEVELOPMENTS SUCH 216 00:07:24,560 --> 00:07:26,200 AS THE SICKLE CELL DISEASE 217 00:07:26,200 --> 00:07:27,160 IMPLEMENTATION CONSORTIUM THAT 218 00:07:27,160 --> 00:07:28,840 YOU WILL HEAR IN THE NEXT 219 00:07:28,840 --> 00:07:29,520 SESSION. 220 00:07:29,520 --> 00:07:31,080 THERE ARE LARGE SYSTEMS THAT 221 00:07:31,080 --> 00:07:34,080 USES SINGLE DATABASES SUCH AS 222 00:07:34,080 --> 00:07:35,560 KAISER PERMANENTE AND VETERANS 223 00:07:35,560 --> 00:07:37,440 AFFAIRS, AND THERE ARE SINGLE 224 00:07:37,440 --> 00:07:38,800 CENTER REGISTRIES THAT EVEN 225 00:07:38,800 --> 00:07:40,200 THOUGH SOME OF THEM DO HAVE A 226 00:07:40,200 --> 00:07:41,640 LOT OF PATIENTS, THEY'RE NOT 227 00:07:41,640 --> 00:07:42,760 CONSIDERED BIG DATA. 228 00:07:42,760 --> 00:07:44,160 THE PROBLEM WITH ALL OF THEM IS 229 00:07:44,160 --> 00:07:46,680 THAT THEY ARE NOT REALLY 230 00:07:46,680 --> 00:07:48,520 POPULATION-LEVEL DATA BECAUSE 231 00:07:48,520 --> 00:07:50,720 THEY DO NOT ENCOMPASS THE ENTIRE 232 00:07:50,720 --> 00:07:51,920 POPULATION. 233 00:07:51,920 --> 00:07:53,880 ALTHOUGH THEY'RE ALL VERY 234 00:07:53,880 --> 00:07:54,320 IMPORTANT. 235 00:07:54,320 --> 00:07:56,960 SO IN THIS FIGURE HERE THAT WE 236 00:07:56,960 --> 00:07:59,920 PUBLISHED LAST YEAR SHOWS THE 237 00:07:59,920 --> 00:08:01,320 RELATIONSHIP BETWEEN 238 00:08:01,320 --> 00:08:02,080 POPULATION-LEVEL DATA WITH THE 239 00:08:02,080 --> 00:08:04,200 OTHER TYPES OF REGISTRIES THAT 240 00:08:04,200 --> 00:08:05,720 EXIST. 241 00:08:05,720 --> 00:08:09,440 SO IF YOU LOOK AT THE DARK GREEN 242 00:08:09,440 --> 00:08:11,920 CIRCLE, WE CALL IT A POPULATION 243 00:08:11,920 --> 00:08:13,600 SURVEILLANCE, THAT IS 244 00:08:13,600 --> 00:08:14,560 POPULATION-LEVEL DATA AND 245 00:08:14,560 --> 00:08:15,880 ENCOMPASSES ALL THE OTHER 246 00:08:15,880 --> 00:08:19,680 REGISTRIES AND THE 247 00:08:19,680 --> 00:08:21,440 SUBPOPULATIONS THAT REGISTRIES, 248 00:08:21,440 --> 00:08:25,080 FOR EXAMPLE, ENCOMPASS. 249 00:08:25,080 --> 00:08:27,120 SO IN ESSENCE, THE WAY TO 250 00:08:27,120 --> 00:08:29,320 UNDERSTAND IT IS THAT COHORT 251 00:08:29,320 --> 00:08:30,800 STUDIES AND REGISTRIES, FOR 252 00:08:30,800 --> 00:08:32,720 EXAMPLE, EVEN THOUGH THEY MAY BE 253 00:08:32,720 --> 00:08:33,800 MULTISITE, MULTICENTER, THEY'RE 254 00:08:33,800 --> 00:08:36,200 A SUBSET OF THE POPULATION LEVEL 255 00:08:36,200 --> 00:08:37,480 DATA THAT SURVEILLANCE PROGRAMS 256 00:08:37,480 --> 00:08:39,960 CAN PROVIDE. 257 00:08:39,960 --> 00:08:41,920 SO BY HAVING POPULATION-LEVEL 258 00:08:41,920 --> 00:08:44,320 DATA, BY HAVING A SURVEILLANCE 259 00:08:44,320 --> 00:08:45,080 PROGRAM, WE'LL BE ABLE TO 260 00:08:45,080 --> 00:08:46,920 ESTIMATE THE TRUE PREVALENCE OF 261 00:08:46,920 --> 00:08:49,880 A DISEASE AND ITS COMPLICATIONS. 262 00:08:49,880 --> 00:08:50,880 THE GEOGRAPHIC DISTRIBUTION OF 263 00:08:50,880 --> 00:08:54,040 ALL CASES, WE'LL BE ABLE TO 264 00:08:54,040 --> 00:08:55,240 MONITOR POPULATION MOVEMENT AS 265 00:08:55,240 --> 00:08:57,520 PEOPLE MOVE FROM ONE STATE OR 266 00:08:57,520 --> 00:08:59,640 ONE CITY TO THE OTHER. 267 00:08:59,640 --> 00:09:01,560 IDENTIFY AREAS WHERE CLINICIANS 268 00:09:01,560 --> 00:09:03,560 ARE NEEDED OR MORE CLINICS ARE 269 00:09:03,560 --> 00:09:04,120 NEEDED. 270 00:09:04,120 --> 00:09:06,160 AND THEN MONITOR HEALTHCARE 271 00:09:06,160 --> 00:09:07,720 UTILIZATION ACROSS MULTIPLE 272 00:09:07,720 --> 00:09:11,640 INSTITUTIONS AND BE ABLE TO MAKE 273 00:09:11,640 --> 00:09:14,040 COMPARISONS. 274 00:09:14,040 --> 00:09:16,160 THERE ARE A VARIETY OF BARRIERS 275 00:09:16,160 --> 00:09:18,440 FOR US TO BUILD SURVEILLANCE 276 00:09:18,440 --> 00:09:18,880 SYSTEMS. 277 00:09:18,880 --> 00:09:21,320 FOR EXAMPLE, THERE ARE MULTIPLE 278 00:09:21,320 --> 00:09:23,800 DATA SOURCES THAT COMPRISE A 279 00:09:23,800 --> 00:09:24,480 SURVEILLANCE SYSTEM. 280 00:09:24,480 --> 00:09:26,520 AND MOST OF THE TIME, THEY'RE 281 00:09:26,520 --> 00:09:27,280 NOT LINKED. 282 00:09:27,280 --> 00:09:29,520 THE OWNERSHIP OF THOSE DATASETS 283 00:09:29,520 --> 00:09:31,240 IS VARIABLE, SO DIFFERENT PEOPLE 284 00:09:31,240 --> 00:09:33,520 OWN DIFFERENT DATA. 285 00:09:33,520 --> 00:09:35,520 AND THEN VARIABLE QUALITY OF 286 00:09:35,520 --> 00:09:37,920 THOSE DATASETS, NOT ALL DATASETS 287 00:09:37,920 --> 00:09:42,120 ARE RESEARCH-READY. 288 00:09:42,120 --> 00:09:43,720 AND THEN TO ACCESS THOSE 289 00:09:43,720 --> 00:09:44,920 DATASETS, IT CAN BE CUMBERSOME. 290 00:09:44,920 --> 00:09:47,560 IT CAN BE A LONG, BUREAUCRATIC 291 00:09:47,560 --> 00:09:52,040 PROCESS THAT CREATES A SLOW 292 00:09:52,040 --> 00:09:53,640 ACCESS ROAD, AND IT TAKES TIME 293 00:09:53,640 --> 00:09:56,480 TO COMPILE AND VALIDATE THIS 294 00:09:56,480 --> 00:09:57,520 DATASET. 295 00:09:57,520 --> 00:10:00,000 SO OUR APPROACH, THE SCDC 296 00:10:00,000 --> 00:10:01,280 APPROACH TO BUILD 297 00:10:01,280 --> 00:10:02,920 POPULATION-LEVEL DATA OR 298 00:10:02,920 --> 00:10:05,720 SURVEILLANCE PROGRAM IS TO APPLY 299 00:10:05,720 --> 00:10:08,640 SIMILAR PRINCIPLES ACROSS ALL 300 00:10:08,640 --> 00:10:09,520 PARTICIPATING STATES IN WHAT WE 301 00:10:09,520 --> 00:10:11,160 CALL A DISTRIBUTED DATA NETWORK, 302 00:10:11,160 --> 00:10:13,360 WHICH I WILL DISCUSS IN A FEW 303 00:10:13,360 --> 00:10:13,760 SLIDES. 304 00:10:13,760 --> 00:10:15,960 BUT WHAT IT TAKES TO DO THIS 305 00:10:15,960 --> 00:10:16,960 TOGETHER IS THAT WE HAVE TO 306 00:10:16,960 --> 00:10:19,480 BUILD A RELATIONSHIP ACROSS ALL 307 00:10:19,480 --> 00:10:20,800 STATE, ALL THE PARTICIPANTS, WE 308 00:10:20,800 --> 00:10:22,640 HAVE TO STANDARDIZE THE DATA, WE 309 00:10:22,640 --> 00:10:24,840 HAVE TO CREATE A 310 00:10:24,840 --> 00:10:25,680 MULTIDISCIPLINARY APPROACH. 311 00:10:25,680 --> 00:10:28,080 IT TAKES DIFFERENT TYPES OF 312 00:10:28,080 --> 00:10:31,680 PEOPLE WITH DIFFERENT EXPERTISE 313 00:10:31,680 --> 00:10:33,320 TO CREATE A SURVEILLANCE PROGRAM 314 00:10:33,320 --> 00:10:35,480 AND SOMETIMES WE NEED AN HONEST 315 00:10:35,480 --> 00:10:37,480 BROKER WHO IS AN IMPARTIAL 316 00:10:37,480 --> 00:10:38,920 MEDIATOR TO ALLOW US ACCESS TO 317 00:10:38,920 --> 00:10:44,040 DIFFERENT TYPES OF DATA. 318 00:10:44,040 --> 00:10:45,760 AND BECAUSE THERE IS VARIABILITY 319 00:10:45,760 --> 00:10:49,800 IN WHO HO OWNS THE DATA IN WHICH 320 00:10:49,800 --> 00:10:51,680 STATE AND FORMAT THE DATA STORED 321 00:10:51,680 --> 00:10:53,880 IN DIFFERENT STATES, THERE'S 322 00:10:53,880 --> 00:10:54,840 SOME VARIABILITY IN THE APPROACH 323 00:10:54,840 --> 00:10:56,280 TO CREATING A DISEASE 324 00:10:56,280 --> 00:10:58,160 SURVEILLANCE PROGRAM. 325 00:10:58,160 --> 00:11:01,640 SO FOR EXAMPLE, NEWBORN 326 00:11:01,640 --> 00:11:02,880 SCREENING AND MEDICAID DATA, 327 00:11:02,880 --> 00:11:04,600 THEY ARE IN DIFFERENT FORMATS IN 328 00:11:04,600 --> 00:11:06,480 DIFFERENT STATES SO IN THE ONE 329 00:11:06,480 --> 00:11:07,760 SCREEN DATA FORMAT IN TENNESSEE 330 00:11:07,760 --> 00:11:08,800 IS DIFFERENT THAN WHAT IT WOULD 331 00:11:08,800 --> 00:11:10,520 LOOK LIKE IN GEORGIA OR NORTH 332 00:11:10,520 --> 00:11:11,360 CAROLINA, FOR EXAMPLE. 333 00:11:11,360 --> 00:11:13,920 SO EACH STATE EULSES A UNIQUE 334 00:11:13,920 --> 00:11:15,200 DATA FLOW AND WHAT I'M SHOWING 335 00:11:15,200 --> 00:11:17,240 YOU HERE ON THIS FIGURE IS THE 336 00:11:17,240 --> 00:11:20,760 APPROACH TO THE DATA FLOW IN THE 337 00:11:20,760 --> 00:11:21,440 STATE OF TENNESSEE. 338 00:11:21,440 --> 00:11:23,960 SO FOR EXAMPLE, WE BEGAN BY 339 00:11:23,960 --> 00:11:25,800 MERGING VITAL STATISTICS DATA 340 00:11:25,800 --> 00:11:29,440 WITH HOSPITAL UT UTILIZATION DAA 341 00:11:29,440 --> 00:11:30,520 AND MEDICAID DATA. 342 00:11:30,520 --> 00:11:32,240 ONCE THESE THREE DATASETS ARE 343 00:11:32,240 --> 00:11:33,680 LINKED, THEN WE LINKED WITH 344 00:11:33,680 --> 00:11:36,320 NEWBORN SCREENING DATA AND ONLY 345 00:11:36,320 --> 00:11:40,480 THEN WE'RE ABLE TO LI LINK WITH 346 00:11:40,480 --> 00:11:42,240 CLINIC-LEVEL DATA AND LOCAL 347 00:11:42,240 --> 00:11:42,560 REGISTRIES. 348 00:11:42,560 --> 00:11:44,480 ONCE THIS IS DONE, WE CAN 349 00:11:44,480 --> 00:11:46,160 ANALYZE THE DATA AND REPORT. 350 00:11:46,160 --> 00:11:48,440 AND THE WAY WE REPORT IS BY 351 00:11:48,440 --> 00:11:49,880 USING A COMMON DATA MODEL WHICH 352 00:11:49,880 --> 00:11:51,960 I WILL EXPLAIN NEXT. 353 00:11:51,960 --> 00:11:53,160 THOSE THREE OTHER EXAMPLES ARE 354 00:11:53,160 --> 00:11:56,000 THE DATA FLOW FOR GEORGIA, 355 00:11:56,000 --> 00:11:57,840 COLORADO, AND NORTH CAROLINA. 356 00:11:57,840 --> 00:11:59,240 GEORGIA AND NORTH CAROLINA ARE 357 00:11:59,240 --> 00:12:04,320 ON THE LINE, AND THEY WILL GIVE 358 00:12:04,320 --> 00:12:06,040 MORE DETAILS AND ALSO YOU CAN 359 00:12:06,040 --> 00:12:07,680 ASK MORE QUESTIONS ABOUT THE 360 00:12:07,680 --> 00:12:08,880 PROCESS IN DIFFERENT STATES. 361 00:12:08,880 --> 00:12:10,440 THE DATA VALIDATION AND 362 00:12:10,440 --> 00:12:11,520 STANDARDIZATION OF THE DATA ALSO 363 00:12:11,520 --> 00:12:12,640 FOLLOWS A PROCESS THAT WAS 364 00:12:12,640 --> 00:12:14,920 AGREED UPON IN OUR GROUP, SO THE 365 00:12:14,920 --> 00:12:16,480 CASE IDENTIFICATION, THIS IS AN 366 00:12:16,480 --> 00:12:19,640 EXAMPLE OF NORTH CAROLINA, THEY 367 00:12:19,640 --> 00:12:22,320 USE LEVEL 2 IDENTIFICATION OF 368 00:12:22,320 --> 00:12:23,680 THREE ENCOUNTERS FOR SICKLE CELL 369 00:12:23,680 --> 00:12:24,640 DISEASE OVER FIVE YEARS. 370 00:12:24,640 --> 00:12:26,080 HERE ON THE RIGHT, EXAMPLE OF 371 00:12:26,080 --> 00:12:28,800 DATA LINKAGE AND DEDUPLICATION 372 00:12:28,800 --> 00:12:33,520 FROM GEORGIA BEGINS WITH 373 00:12:33,520 --> 00:12:34,600 CLEANING, DEDUPLICATING AND 374 00:12:34,600 --> 00:12:35,920 STANDARDIZING THE DATASET. 375 00:12:35,920 --> 00:12:37,360 THEN AS I MENTIONED WE FOLLOW A 376 00:12:37,360 --> 00:12:38,760 COMMON DATA MODEL WHICH IS A 377 00:12:38,760 --> 00:12:40,960 STANDARD VARIABLE FORMAT THAT -- 378 00:12:40,960 --> 00:12:42,680 A DICTIONARY WE CREATED FOR THIS 379 00:12:42,680 --> 00:12:43,360 PROJECT. 380 00:12:43,360 --> 00:12:44,680 WE DECIDED WHICH VARIABLES THAT 381 00:12:44,680 --> 00:12:46,520 WE WANT TO INCLUDE, HOW THEY 382 00:12:46,520 --> 00:12:50,360 WILL BE NAMED, HOW THEY WILL BE 383 00:12:50,360 --> 00:12:51,440 FORMATTED, AND THEN EACH STATE 384 00:12:51,440 --> 00:12:52,880 CREATE A DATASET THAT HAS THE 385 00:12:52,880 --> 00:12:57,480 SAME VARIABLES, THE SAME 386 00:12:57,480 --> 00:12:59,520 VARIABLE NAMES AND FORMATS. 387 00:12:59,520 --> 00:13:00,760 WE ADOPT A COMMON DATA MODEL 388 00:13:00,760 --> 00:13:02,280 THAT MAKES IT A LOT EASIER FOR 389 00:13:02,280 --> 00:13:05,440 US TO EXCHANGE DATA AT THE END. 390 00:13:05,440 --> 00:13:10,120 THE COMMON DATA MODEL IS ONE 391 00:13:10,120 --> 00:13:13,640 SINGLE DA DATA INSTRUMENT AND OE 392 00:13:13,640 --> 00:13:15,400 YOU AGREE ON THOSE STANDARD WAYS 393 00:13:15,400 --> 00:13:16,720 OF NAMING THE VARIABLES AND 394 00:13:16,720 --> 00:13:17,960 STRUCTURING THE VARIABLES, IS 395 00:13:17,960 --> 00:13:20,080 THAT WE CAN EXPAND TO ADDITIONAL 396 00:13:20,080 --> 00:13:21,640 DATASETS. 397 00:13:21,640 --> 00:13:24,160 SO HERE'S IN THE PICTURE AN 398 00:13:24,160 --> 00:13:26,480 EXAMPLE OF THE COORDINATED 399 00:13:26,480 --> 00:13:27,400 SURVEILLANCE DATA WE HAVE, BUT 400 00:13:27,400 --> 00:13:29,960 WE CAN EXPAND TO HEALTH 401 00:13:29,960 --> 00:13:31,040 OUTCOMES, PHARMACY DATA AND 402 00:13:31,040 --> 00:13:32,400 OTHER TYPES OF DATASETS, ALL 403 00:13:32,400 --> 00:13:33,680 FOLLOWING THE SAME COMMON DATA 404 00:13:33,680 --> 00:13:34,160 MODEL. 405 00:13:34,160 --> 00:13:35,880 AND WE ARE IMPLEMENTING A 406 00:13:35,880 --> 00:13:37,720 FEDERATED MODEL WHERE DATA ARE 407 00:13:37,720 --> 00:13:39,800 MAINTAINED LOCALLY BY EACH SITE. 408 00:13:39,800 --> 00:13:41,760 AND THIS IS WHAT I'M SHOWING YOU 409 00:13:41,760 --> 00:13:42,320 IN THIS SLIDE. 410 00:13:42,320 --> 00:13:45,920 THE DISTRIBUTED DATA NETWORK 411 00:13:45,920 --> 00:13:49,880 THAT WE ESTABLISHED IS THAT EACH 412 00:13:49,880 --> 00:13:52,080 SITE, EACH STATE IS AN EQUAL 413 00:13:52,080 --> 00:13:53,560 PARTNER, SHOWN HERE IN THE 414 00:13:53,560 --> 00:13:56,200 BOTTOM LEFT OF THE PICTURE. 415 00:13:56,200 --> 00:13:57,960 SO WE ALL FOLLOW A COMMON DATA 416 00:13:57,960 --> 00:14:01,680 MODEL AND THEN EACH SITE OWNS 417 00:14:01,680 --> 00:14:03,880 THE DATA, AND THEN THERE'S A 418 00:14:03,880 --> 00:14:06,720 LEAD CENTER THAT QUERIES THIS 419 00:14:06,720 --> 00:14:09,800 DATA AND THE STATES CAN SEND 420 00:14:09,800 --> 00:14:10,840 AGGREGATED RESULTS AT THE END, 421 00:14:10,840 --> 00:14:13,400 BUT THE DATA BELONGS, IS OWNED, 422 00:14:13,400 --> 00:14:17,600 BY EACH SITE OR EACH STATE. 423 00:14:17,600 --> 00:14:18,720 AND THEN THIS PICTURE ON THE 424 00:14:18,720 --> 00:14:21,240 LEFT, I'M SHOWING THE 11 STATES 425 00:14:21,240 --> 00:14:23,560 THAT CURRENTLY HAVE A 426 00:14:23,560 --> 00:14:26,160 SURVEILLANCE PROGRAM AND 427 00:14:26,160 --> 00:14:27,000 DR. HULIHAN SHOWED THIS PICTURE 428 00:14:27,000 --> 00:14:28,480 BUT THE POINT IS TO SHOW THE 429 00:14:28,480 --> 00:14:29,280 PICTURE ON THE RIGHT, WHICH IS 430 00:14:29,280 --> 00:14:30,520 THE MAP OF THE UNITED STATES 431 00:14:30,520 --> 00:14:32,080 SHOWING THE PREVALENCE OF SICKLE 432 00:14:32,080 --> 00:14:34,160 CELL DISEASE IN OUR COUNTRY, AND 433 00:14:34,160 --> 00:14:35,720 WHAT IS THE POINT HERE IS THAT 434 00:14:35,720 --> 00:14:37,760 THE SURVEILLANCE PROGRAM IS 435 00:14:37,760 --> 00:14:41,560 BEGINNING TO NOW EXTEND TO STATE 436 00:14:41,560 --> 00:14:43,000 WHERE THE PREVALENCE IS THE 437 00:14:43,000 --> 00:14:43,920 HIGHEST, THE PREVALENCE OF 438 00:14:43,920 --> 00:14:45,640 SICKLE CELL DISEASE IS THE 439 00:14:45,640 --> 00:14:46,600 HIGHEST. 440 00:14:46,600 --> 00:14:48,800 SO LITTLE BY LITTLE, WE'RE 441 00:14:48,800 --> 00:14:50,240 BEGINNING TO COVER ALL STATES 442 00:14:50,240 --> 00:14:52,440 AND LITERALLY HAVE 443 00:14:52,440 --> 00:14:54,640 POPULATION-LEVEL DATA. 444 00:14:54,640 --> 00:14:56,560 SO THE NEXT STEPS ARE HOPEFULLY 445 00:14:56,560 --> 00:14:59,200 TO EXPAND TO MORE STATES, WHICH 446 00:14:59,200 --> 00:15:00,400 HOPEFULLY ALL 50 STATES ONE DAY 447 00:15:00,400 --> 00:15:01,960 WILL HAVE A SURVEILLANCE 448 00:15:01,960 --> 00:15:05,880 PROGRAM, SO WE'LL HAVE A TRUE 449 00:15:05,880 --> 00:15:07,120 POPULATION COVERAGE, 450 00:15:07,120 --> 00:15:07,960 POPULATION-LEVEL COVERAGE OF 451 00:15:07,960 --> 00:15:08,600 SICKLE CELL DISEASE IN THE 452 00:15:08,600 --> 00:15:09,840 COUNTRY. 453 00:15:09,840 --> 00:15:11,920 AND THEN EXPAND TO OTHER DATA 454 00:15:11,920 --> 00:15:14,760 SOURCES, SO FOR EXAMPLE, 455 00:15:14,760 --> 00:15:16,280 MEDICARE DATA IS VERY EXPENSIVE 456 00:15:16,280 --> 00:15:16,720 TO ACCESS. 457 00:15:16,720 --> 00:15:17,800 SO HOPEFULLY THAT WILL BE 458 00:15:17,800 --> 00:15:20,840 INCLUDED IN THE SURVEILLANCE 459 00:15:20,840 --> 00:15:26,240 PROGRAM. 460 00:15:26,240 --> 00:15:27,520 ACADEMIC, ENVIRONMENTAL DATA, ET 461 00:15:27,520 --> 00:15:27,960 CETERA. 462 00:15:27,960 --> 00:15:29,920 AND HOPEFULLY WE CAN MAKE THIS 463 00:15:29,920 --> 00:15:30,840 PROCESS SIMPLE. 464 00:15:30,840 --> 00:15:32,480 ONE EXAMPLE IS PERHAPS USING 465 00:15:32,480 --> 00:15:33,320 PUBLIC HEALTH AUTHORITY IN MORE 466 00:15:33,320 --> 00:15:36,600 AND MORE STATES THAT HAVE 467 00:15:36,600 --> 00:15:37,280 DIFFICULTY ACCESSING THE DATA, 468 00:15:37,280 --> 00:15:39,440 AND THE PUBLIC HEALTH AUTHORITY 469 00:15:39,440 --> 00:15:40,680 FOR THOSE WHO DON'T KNOW IS A 470 00:15:40,680 --> 00:15:42,640 RULE THAT PERMITS ENTITIES TO 471 00:15:42,640 --> 00:15:45,240 DISCLOSE PROTECTED HEALTH 472 00:15:45,240 --> 00:15:48,760 INFORMATION WI WITHOUT 473 00:15:48,760 --> 00:15:50,040 AUTHORIZATION, SO FOR EXAMPLE, 474 00:15:50,040 --> 00:15:51,320 WITHOUT IRB APPROVAL, 475 00:15:51,320 --> 00:15:52,800 SPECIFICALLY USED FOR PUBLIC 476 00:15:52,800 --> 00:15:55,000 HEALTH PURPOSES. 477 00:15:55,000 --> 00:15:56,680 AND ALSO MORE BUY-IN FROM 478 00:15:56,680 --> 00:15:57,720 GOVERNMENT AGENCIES ALSO 479 00:15:57,720 --> 00:15:59,360 IMPROVES THE ABILITY FOR US TO 480 00:15:59,360 --> 00:16:01,440 ACCESS DIFFERENT TYPES OF DATA. 481 00:16:01,440 --> 00:16:06,280 SO WITH THAT, I'M GOING TO END 482 00:16:06,280 --> 00:16:08,000 AND TURN IT BACK TO DR. HULIHAN. 483 00:16:08,000 --> 00:16:10,320 THANK YOU. 484 00:16:10,320 --> 00:16:13,800 >> THANK YOU SO MUCH, 485 00:16:13,800 --> 00:16:14,520 DR. HANKINS. 486 00:16:14,520 --> 00:16:15,760 SO FOR OUR NEXT PRESENTATION 487 00:16:15,760 --> 00:16:19,480 TODAY, WE'RE GOING TO HAVE 488 00:16:19,480 --> 00:16:21,240 DR. MARIAM KAYLE FROM THE NORTH 489 00:16:21,240 --> 00:16:22,120 CAROLINA SCDC TEAM. 490 00:16:22,120 --> 00:16:24,080 SHE'S GOING TO BE PRESENTING ON 491 00:16:24,080 --> 00:16:26,160 THE HEALTHCARE UTILIZATION 492 00:16:26,160 --> 00:16:28,240 INFORMATION THAT HAS BEEN PULLED 493 00:16:28,240 --> 00:16:30,440 FROM THIS DATASET IN THE STATE 494 00:16:30,440 --> 00:16:31,520 OF NORTH CAROLINA. 495 00:16:31,520 --> 00:16:34,840 SO MARIAM? 496 00:16:34,840 --> 00:16:36,000 >>HELLO, EVERYONE. 497 00:16:36,000 --> 00:16:37,080 MY NAME IS MARIAM KAYLE. 498 00:16:37,080 --> 00:16:38,360 THANK YOU SO MUCH FOR THE 499 00:16:38,360 --> 00:16:38,840 INVITATION. 500 00:16:38,840 --> 00:16:41,400 I'M REALLY EXCITED TO PRESENT 501 00:16:41,400 --> 00:16:42,080 THE NORTH CAROLINA SICKLE CELL 502 00:16:42,080 --> 00:16:43,000 DATA COLLECTION PROGRAM AND 503 00:16:43,000 --> 00:16:43,800 SHARE WITH YOU SOME OF THE WORK 504 00:16:43,800 --> 00:16:46,880 THAT WE HAVE BEEN DOING ON 505 00:16:46,880 --> 00:16:47,760 UNDERSTANDING HEALTHCARE 506 00:16:47,760 --> 00:16:56,400 UTILIZATION IN OUR STATE. 507 00:16:56,400 --> 00:16:57,840 THESE ARE MY DISCLOSURES. 508 00:16:57,840 --> 00:17:02,080 OUR FUNDING FROM THE CDC AND THE 509 00:17:02,080 --> 00:17:03,240 PRESENTATION TODAY REPRESENTS MY 510 00:17:03,240 --> 00:17:05,840 VIEWS AND NOT THE NORTH CAROLINA 511 00:17:05,840 --> 00:17:06,440 DEPARTMENT OF HEALTH AND HUMAN 512 00:17:06,440 --> 00:17:09,160 SERVICES. 513 00:17:09,160 --> 00:17:10,360 SO A LITTLE BIT ABOUT OUR 514 00:17:10,360 --> 00:17:10,840 PROGRAM. 515 00:17:10,840 --> 00:17:12,200 OUR PROGRAM IS A LITTLE BIT 516 00:17:12,200 --> 00:17:13,560 DIFFERENT AND UNIQUE THAN THE 517 00:17:13,560 --> 00:17:15,320 OTHER STATE IN THAT WE HAVE A 518 00:17:15,320 --> 00:17:17,280 REALLY CLOSE COLLABORATION 519 00:17:17,280 --> 00:17:17,920 BETWEEN DUKE UNIVERSITY SCHOOL 520 00:17:17,920 --> 00:17:21,560 OF NURSING AND THE NORTH 521 00:17:21,560 --> 00:17:22,160 CAROLINA DEPARTMENT OF HEALTH 522 00:17:22,160 --> 00:17:23,240 AND HUMAN SERVICES, DIVISION OF 523 00:17:23,240 --> 00:17:23,560 PUBLIC HEALTH. 524 00:17:23,560 --> 00:17:26,600 WE ALSO HAVE ESTABLISHED 525 00:17:26,600 --> 00:17:28,000 COLLABORATIONS ACROSS THE STATE 526 00:17:28,000 --> 00:17:29,280 WITH DIFFERENT ENTITIES THAT ARE 527 00:17:29,280 --> 00:17:31,840 INVOLVED IN SICKLE CELL DISEASE, 528 00:17:31,840 --> 00:17:32,720 INCLUDING PIEDMONT HEALTH 529 00:17:32,720 --> 00:17:34,320 SERVICES AND SICKLE CELL AGENCY, 530 00:17:34,320 --> 00:17:36,640 A COMMUNITY-BASED ORGANIZATION 531 00:17:36,640 --> 00:17:38,280 ACROSS NORTH CAROLINA, THE 532 00:17:38,280 --> 00:17:38,920 GOVERNOR'S APPOINTED COUNCIL ON 533 00:17:38,920 --> 00:17:42,120 SICKLE CELL DISEASE, AND WE HAVE 534 00:17:42,120 --> 00:17:43,120 COLLABORATIONS FROM ALL SICKLE 535 00:17:43,120 --> 00:17:45,400 CELL CENTERS ACROSS THE STATE, 536 00:17:45,400 --> 00:17:46,560 THE SIX COMPREHENSIVE SICKLE 537 00:17:46,560 --> 00:17:47,680 CELL CENTERS AND TWO OTHER SITES 538 00:17:47,680 --> 00:17:49,640 THAT PROVIDE CARE TO PEOPLE WITH 539 00:17:49,640 --> 00:17:50,640 SICKLE CELL DISEASE, AND PEOPLE 540 00:17:50,640 --> 00:17:52,640 WITH LIVED EXPERIENCE. 541 00:17:52,640 --> 00:17:54,280 WE'VE ENGAGED THOSE PARTNERS 542 00:17:54,280 --> 00:17:57,640 THROUGH AN ADVISORY COUNCIL THAT 543 00:17:57,640 --> 00:17:59,080 IS AN INTEGRAL PART OF OUR 544 00:17:59,080 --> 00:18:01,680 PROGRAM AND ADVISES US ON THE 545 00:18:01,680 --> 00:18:04,880 PRIORITIES FOR ANALYSES FOR OUR 546 00:18:04,880 --> 00:18:06,600 STATE. 547 00:18:06,600 --> 00:18:07,760 DR. HULIHAN PRESENTED SOME OF 548 00:18:07,760 --> 00:18:09,920 THE DATA SOURCES, WHAT WE HAVE 549 00:18:09,920 --> 00:18:11,640 CURATED IN NORTH CAROLINA ARE 550 00:18:11,640 --> 00:18:15,360 THE ALL STATE, ALL PAYER ED AND 551 00:18:15,360 --> 00:18:19,960 HOSPITAL DISTAR DISCHARGE DATA M 552 00:18:19,960 --> 00:18:23,440 2013, WE HAVE DUKE HEALTH 553 00:18:23,440 --> 00:18:24,560 ELECTRONIC HEALTH RECORDS, 554 00:18:24,560 --> 00:18:25,760 NEWBORN SCREENING AND VITAL 555 00:18:25,760 --> 00:18:29,240 RECORDS, AND WE ARE -- WE'VE 556 00:18:29,240 --> 00:18:32,120 BEEN WORKING WITH NORTH CAROLINA 557 00:18:32,120 --> 00:18:35,480 MEDICAID AND EXPECT TO RECEIVE 558 00:18:35,480 --> 00:18:44,360 MEDICAID DATA ANY TIME SOON. 559 00:18:44,360 --> 00:18:46,880 SO MY PURPOSES TODAY ARE TO -- I 560 00:18:46,880 --> 00:18:47,960 HAVE -- ARE TWOFOLD. 561 00:18:47,960 --> 00:18:49,080 SO FIRST I'LL TRY AND ILLUSTRATE 562 00:18:49,080 --> 00:18:50,520 HOW WE'RE USING SURVEILLANCE 563 00:18:50,520 --> 00:18:52,600 DATA TO DESCRIBE HEALTHCARE 564 00:18:52,600 --> 00:18:54,000 UTILIZATION IN SICKLE CELL 565 00:18:54,000 --> 00:18:55,240 DISEASE IN NORTH CAROLINA, 566 00:18:55,240 --> 00:18:57,600 FOCUSED ON ED AND HOSPITAL 567 00:18:57,600 --> 00:18:59,240 ADMISSIONS, AND NEXT I'LL 568 00:18:59,240 --> 00:19:00,240 ILLUSTRATE HOW WE'RE USING SOME 569 00:19:00,240 --> 00:19:02,080 OF OUR DATA TO SUPPORT 570 00:19:02,080 --> 00:19:03,960 INITIATIVES ACROSS THE STATES TO 571 00:19:03,960 --> 00:19:05,080 IMPROVE -- ACROSS THE STATE TO 572 00:19:05,080 --> 00:19:12,360 IMPROVE SICKLE CELL CARE. 573 00:19:12,360 --> 00:19:14,480 AS I MENTIONED, THE ANALYSIS I 574 00:19:14,480 --> 00:19:18,360 WILL PRESENT WILL BE FROM ALL 575 00:19:18,360 --> 00:19:20,040 STATE, ALL PAYER ED AND 576 00:19:20,040 --> 00:19:21,440 DISCHARGE DATASET TO IDENTIFY 577 00:19:21,440 --> 00:19:23,880 OUR COHORTS WE USED DATA FROM 578 00:19:23,880 --> 00:19:24,600 2013 TO 2019. 579 00:19:24,600 --> 00:19:27,160 THIS IS A LIMITED PHI DATASET, 580 00:19:27,160 --> 00:19:28,440 SO WE'VE LINKED INDIVIDUALS 581 00:19:28,440 --> 00:19:30,520 USING THEIR DATE OF BIRTH, ZIP 582 00:19:30,520 --> 00:19:32,400 CODE AND SEX ACROSS THE DATA AND 583 00:19:32,400 --> 00:19:35,000 ACROSS THE DIFFERENT TIERS. 584 00:19:35,000 --> 00:19:37,080 WE'VE INCLUDED THE LEVEL 2 CASE 585 00:19:37,080 --> 00:19:38,520 DEFINITION, WHICH IS MORE THAN 586 00:19:38,520 --> 00:19:40,920 AT LEAST THREE ICD CODES FOR 587 00:19:40,920 --> 00:19:42,320 SICKLE CELL DISEASE IN A 588 00:19:42,320 --> 00:19:43,880 FIVE-YEAR PERIOD. 589 00:19:43,880 --> 00:19:45,400 THE PEOPLE HAD TO HAVE -- EITHER 590 00:19:45,400 --> 00:19:48,000 HAVE A VISIT IN 2017 OR HAVE HAD 591 00:19:48,000 --> 00:19:49,760 ANY VISIT BEFORE AND AFTER TO BE 592 00:19:49,760 --> 00:19:51,200 INCLUDED IN THE COHORT. 593 00:19:51,200 --> 00:19:52,400 THE REASONING FOR THAT IS THAT 594 00:19:52,400 --> 00:19:54,360 WE WANTED TO MAKE SURE THEY'RE 595 00:19:54,360 --> 00:19:57,440 STILL IN NORTH CAROLINA. 596 00:19:57,440 --> 00:19:58,840 AND THEY ARE NORTH CAROLINA 597 00:19:58,840 --> 00:20:00,920 RESIDENTS BASED ON THEIR 598 00:20:00,920 --> 00:20:02,920 RESIDENTIAL ZIP CODE. 599 00:20:02,920 --> 00:20:04,400 BY DEFINITION, A HOSPITAL 600 00:20:04,400 --> 00:20:06,280 ADMISSION WHEN I REPORT ON THAT 601 00:20:06,280 --> 00:20:07,920 ENCOMPASSES ALL HOSPITAL 602 00:20:07,920 --> 00:20:09,040 ADMISSIONS THAT IS DIRECT 603 00:20:09,040 --> 00:20:10,120 ADMISSIONS OR ADMISSIONS THAT 604 00:20:10,120 --> 00:20:12,080 STARTED IN THE ED. 605 00:20:12,080 --> 00:20:14,280 ED VISITS ARE ED TREAT AND 606 00:20:14,280 --> 00:20:15,600 RELEASE, MEANING THAT THEY DO 607 00:20:15,600 --> 00:20:17,240 NOT INCLUDE ED TO INPATIENT 608 00:20:17,240 --> 00:20:17,760 ADMISSIONS. 609 00:20:17,760 --> 00:20:20,520 AND WHEN WE REPORT ON AGE, WE'RE 610 00:20:20,520 --> 00:20:22,280 REPORTING ON AGE IN 2017 BECAUSE 611 00:20:22,280 --> 00:20:26,640 WE'RE REPORTING ON UTILIZATION 612 00:20:26,640 --> 00:20:33,200 IN 2017. 613 00:20:33,200 --> 00:20:36,480 SO OUR COHORT FOR THIS ANALYSIS 614 00:20:36,480 --> 00:20:40,120 INCLUDED 5,092 PEOPLE, 54% WERE 615 00:20:40,120 --> 00:20:41,440 FEMALE, 94% AFRICAN AMERICAN, 616 00:20:41,440 --> 00:20:43,920 AND 2% HISPANIC. 617 00:20:43,920 --> 00:20:46,200 THE MEAN MEDIAN AGE IS 25 YEARS 618 00:20:46,200 --> 00:20:47,120 AND ON THE RIGHT SIDE OF THE 619 00:20:47,120 --> 00:20:48,680 SCREEN, YOU CAN SEE THE AGE 620 00:20:48,680 --> 00:20:49,840 DISTRIBUTION WHICH IS WHAT WE 621 00:20:49,840 --> 00:20:51,880 WOULD EXPECT OF THE LIFE 622 00:20:51,880 --> 00:20:53,800 EXPECTANCY OF SICKLE CELL 623 00:20:53,800 --> 00:20:55,320 DISEASE. 624 00:20:55,320 --> 00:20:57,920 ABOUT 13% ONLY OF OUR COHORT WAS 625 00:20:57,920 --> 00:21:00,240 AGED OVER 50 YEARS. 626 00:21:00,240 --> 00:21:01,560 THE TREND THAT YOU SEE HERE IS 627 00:21:01,560 --> 00:21:03,840 SIMILAR TO THE TREND THAT IS 628 00:21:03,840 --> 00:21:05,240 REPORTED BY OTHER STATES, 629 00:21:05,240 --> 00:21:06,160 INCLUDING GEORGIA AND 630 00:21:06,160 --> 00:21:06,480 CALIFORNIA. 631 00:21:06,480 --> 00:21:10,200 SO IT LOOKS LIKE THIS IS AGE 632 00:21:10,200 --> 00:21:12,320 DISTRIBUTION AS SIMILAR TO THE 633 00:21:12,320 --> 00:21:13,240 OTHER STATES. 634 00:21:13,240 --> 00:21:15,560 OF THOSE 5,000 PEOPLE, ABOUT 39% 635 00:21:15,560 --> 00:21:18,400 HAD A HOSPITAL ADMISSION IN 636 00:21:18,400 --> 00:21:18,600 2017. 637 00:21:18,600 --> 00:21:20,120 MEDIAN OF TWO ADMISSIONS AND 638 00:21:20,120 --> 00:21:22,280 LENGTH OF STAY OF SEVEN DAYS. 639 00:21:22,280 --> 00:21:24,720 AND ABOUT 52% HAD AN ED TREAT 640 00:21:24,720 --> 00:21:26,600 AND RELEASE VISIT IN 2017 WITH A 641 00:21:26,600 --> 00:21:29,120 MEDIAN OF TWO VISITS IN THAT 642 00:21:29,120 --> 00:21:33,720 YEAR. 643 00:21:33,720 --> 00:21:35,600 THIS MAP IS SHOWING WHERE THE 644 00:21:35,600 --> 00:21:39,400 5,000 PEOPLE WILL ACROSS THE 645 00:21:39,400 --> 00:21:40,240 STATE. 646 00:21:40,240 --> 00:21:41,840 NORTH CAROLINA HAS ABOUT 100 647 00:21:41,840 --> 00:21:42,880 COUNTIES, AND IT LOOKS LIKE A 648 00:21:42,880 --> 00:21:45,200 MAJORITY OF THE PEOPLE, ABOUT 649 00:21:45,200 --> 00:21:48,560 53%, LIVE IN SIX COUNTIES IN THE 650 00:21:48,560 --> 00:21:48,920 STATE. 651 00:21:48,920 --> 00:21:50,560 OF COURSE THE DARKER THE RED, 652 00:21:50,560 --> 00:21:52,760 THE MORE PEOPLE LIVE IN THOSE -- 653 00:21:52,760 --> 00:21:54,280 THE MORE PEOPLE LIVE IN THAT 654 00:21:54,280 --> 00:21:56,440 AREA, AND THEN THE OTHER THING I 655 00:21:56,440 --> 00:21:58,080 WANT TO POINT OUT IS THE 656 00:21:58,080 --> 00:21:59,200 LOCATION OF THE DIFFERENT SICKLE 657 00:21:59,200 --> 00:22:00,280 CELL CENTERS. 658 00:22:00,280 --> 00:22:05,040 THE BLUE ICONS REFER TO THE 659 00:22:05,040 --> 00:22:06,400 DEPARTMENT OF PUBLIC HEALTH 660 00:22:06,400 --> 00:22:07,560 CONTRACTED COMPREHENSIVE SICKLE 661 00:22:07,560 --> 00:22:09,480 CELL CENTERS AND THE TWO GREY 662 00:22:09,480 --> 00:22:11,040 ICONS REFER TO THE OTHER TWO 663 00:22:11,040 --> 00:22:12,080 SICKLE CELL CLINICAL SITES THAT 664 00:22:12,080 --> 00:22:13,880 ARE NOT CONTRACTED BY THE 665 00:22:13,880 --> 00:22:14,720 DEPARTMENT OF PUBLIC HEALTH, BUT 666 00:22:14,720 --> 00:22:16,640 PROVIDE SERVICES TO PEOPLE WITH 667 00:22:16,640 --> 00:22:18,120 SICKLE CELL DISEASE IN THE 668 00:22:18,120 --> 00:22:19,640 STATE. 669 00:22:19,640 --> 00:22:22,360 THE FIRST THING THAT YOU CAN SEE 670 00:22:22,360 --> 00:22:24,320 IN THIS GRAPH IS AN AGGREGATION 671 00:22:24,320 --> 00:22:26,000 OF PEOPLE KIND OF IN THE CENTRAL 672 00:22:26,000 --> 00:22:30,440 AREA OF NORTH CAROLINA WITH FOUR 673 00:22:30,440 --> 00:22:31,080 CENTERS SERVICING ABOUT FIVE 674 00:22:31,080 --> 00:22:32,000 DIFFERENT COUNTIES WITH THE 675 00:22:32,000 --> 00:22:33,160 HIGHEST NUMBER OF PEOPLE WITH 676 00:22:33,160 --> 00:22:35,080 SICKLE CELL DISEASE IN THE 677 00:22:35,080 --> 00:22:35,280 STATE. 678 00:22:35,280 --> 00:22:37,320 THE NUMBER ONE COUNTY THAT HAD 679 00:22:37,320 --> 00:22:38,680 THE HIGHEST NUMBER OF PEOPLE 680 00:22:38,680 --> 00:22:40,400 WITH SICKLE CELL DISEASE IN THE 681 00:22:40,400 --> 00:22:42,320 STATE IS MECKLENBURG COUNTY, 682 00:22:42,320 --> 00:22:43,720 WHICH IS IN THE CHARLOTTE AREA, 683 00:22:43,720 --> 00:22:45,120 AND THERE ARE TWO CENTERS THERE 684 00:22:45,120 --> 00:22:46,320 THAT PROVIDE CARE FOR PEOPLE 685 00:22:46,320 --> 00:22:49,360 WITH SICKLE CELL DISEASE. 686 00:22:49,360 --> 00:22:52,040 CUMBERLAND IS A COUNTY THAT IS 687 00:22:52,040 --> 00:22:56,160 KIND OF -- YOU CAN SEE ABOUT 32O 688 00:22:56,160 --> 00:22:57,480 CENTER CLOSE TO THAT. 689 00:22:57,480 --> 00:22:59,240 THE EASTERN PART OF THE STATE, 690 00:22:59,240 --> 00:23:01,080 THERE'S ONE CENTER IN GREENVILLE 691 00:23:01,080 --> 00:23:02,640 THAT SERVICES THAT PART OF THE 692 00:23:02,640 --> 00:23:03,760 STATE, AND THE WESTERN PART OF 693 00:23:03,760 --> 00:23:06,480 THE STATE, THERE'S ONE CENTER IN 694 00:23:06,480 --> 00:23:08,720 ASHEVILLE, AND THAT'S A 695 00:23:08,720 --> 00:23:10,160 PEDIATRIC CENTER. 696 00:23:10,160 --> 00:23:12,160 SO IT SEEMS THAT WHAT IT LOOKS 697 00:23:12,160 --> 00:23:14,880 LIKE FROM THIS GRAPH IS THAT 698 00:23:14,880 --> 00:23:15,880 MOST PEOPLE WITH SICKLE CELL 699 00:23:15,880 --> 00:23:17,600 DISEASE IN THE STATE HAVE LIVED 700 00:23:17,600 --> 00:23:19,360 OR AGGREGATED AROUND SICKLE CELL 701 00:23:19,360 --> 00:23:19,800 CENTERS. 702 00:23:19,800 --> 00:23:22,760 THERE IS SOME DECREASED ACCESS 703 00:23:22,760 --> 00:23:23,600 POTENTIALLY IN THE WESTERN PART 704 00:23:23,600 --> 00:23:24,720 OF THE STATE AND THE EASTERN 705 00:23:24,720 --> 00:23:27,120 PART OF THE STATE. 706 00:23:27,120 --> 00:23:30,680 OUR PLANS MOVING FORWARD IS TO 707 00:23:30,680 --> 00:23:32,280 LOOK AT THE UTILIZATION OF THESE 708 00:23:32,280 --> 00:23:33,160 PEOPLE, LOOK AT THE TRAVEL TIME 709 00:23:33,160 --> 00:23:35,400 THAT THEY HAVE TO GET SERVICES, 710 00:23:35,400 --> 00:23:37,480 WHETHER OR NOT THEY'RE USING 711 00:23:37,480 --> 00:23:40,800 MULTIPLE SITES FOR THEIR CARE, 712 00:23:40,800 --> 00:23:43,120 AND LOOK AT THE UTILIZATION BY 713 00:23:43,120 --> 00:23:46,800 DISTANCE TO TRY AND UNDERSTAND 714 00:23:46,800 --> 00:23:48,440 BETTER ACCESS TO CARE IN OUR 715 00:23:48,440 --> 00:23:56,640 STATE. 716 00:23:56,640 --> 00:23:57,840 THIS SLIDE IS SHOWING THE NUMBER 717 00:23:57,840 --> 00:23:59,640 OF VISITS BY AGE GROUP AND WE'RE 718 00:23:59,640 --> 00:24:00,680 SHOWING BOTH HOSPITAL ADMISSIONS 719 00:24:00,680 --> 00:24:04,640 AND ED TREAT AND RELEASE VISITS 720 00:24:04,640 --> 00:24:05,640 ON THE SAME SLIDE. 721 00:24:05,640 --> 00:24:07,080 PATIENTS HAD ABOUT -- IN 2017, 722 00:24:07,080 --> 00:24:09,120 THEY HAD ABOUT 5600 TOTAL 723 00:24:09,120 --> 00:24:10,880 HOSPITAL ADMISSIONS. 724 00:24:10,880 --> 00:24:13,440 80% OF THOSE WERE ED TO 725 00:24:13,440 --> 00:24:14,600 INPATIENT ADMISSIONS. 726 00:24:14,600 --> 00:24:17,680 AND THEN THEY HAD ABOUT 9300 ED 727 00:24:17,680 --> 00:24:21,720 TREAT AND RELEASE VISITS. 728 00:24:21,720 --> 00:24:23,000 THE NOT SURPRISING PART OF THE 729 00:24:23,000 --> 00:24:25,000 SLIDE IS, WE SEE UTILIZATION 730 00:24:25,000 --> 00:24:26,840 REALLY JUMP UP BOTH FOR ED AND 731 00:24:26,840 --> 00:24:29,600 HOSPITAL ADMISSIONS BEGINNING AT 732 00:24:29,600 --> 00:24:31,880 AGE 20, SO THE AGE GROUP 20 TO 733 00:24:31,880 --> 00:24:33,640 29 AND AGE GROUP 30 TO 39 HAD 734 00:24:33,640 --> 00:24:35,800 THE HIGHEST UTILIZATIONS BOTH 735 00:24:35,800 --> 00:24:38,760 FOR ED VISITS AND FOR 736 00:24:38,760 --> 00:24:39,080 ADMISSIONS. 737 00:24:39,080 --> 00:24:41,840 AND THEN THAT TAPERS OFF WITH 738 00:24:41,840 --> 00:24:47,600 THE OLDER POPULATION. 739 00:24:47,600 --> 00:24:48,720 THIS IS AGAIN PRELIMINARY DATA 740 00:24:48,720 --> 00:24:49,800 AND WHAT WE'RE WORKING ON RIGHT 741 00:24:49,800 --> 00:24:51,240 NOW WITH OUR ADVISORY COUNCIL IS 742 00:24:51,240 --> 00:24:52,760 AN ANALYSIS THAT LOOKS AT THIS 743 00:24:52,760 --> 00:24:55,840 AGE GROUP SPECIFICALLY, TRYING 744 00:24:55,840 --> 00:24:57,640 TO LOOK AT SOCIAL DRIVERS OF 745 00:24:57,640 --> 00:24:59,640 HEALTH AND USING THE SOCIAL 746 00:24:59,640 --> 00:25:01,200 VULNERABILITY INDEX AND SEE IF 747 00:25:01,200 --> 00:25:03,480 THERE'S ANY PATTERNS THAT WE 748 00:25:03,480 --> 00:25:04,800 COULD IDENTIFY THAT WOULD HELP 749 00:25:04,800 --> 00:25:06,240 US UNDERSTAND BETTER THE REASONS 750 00:25:06,240 --> 00:25:08,840 WHY THOSE ADMISSIONS JUMP 751 00:25:08,840 --> 00:25:10,240 HIGHER. 752 00:25:10,240 --> 00:25:12,040 THIS IS AS REPORTED IN THE 753 00:25:12,040 --> 00:25:12,800 LITERATURE, WE KNOW THIS AGE 754 00:25:12,800 --> 00:25:15,200 GROUP IS THE TIME WHEN PEOPLE 755 00:25:15,200 --> 00:25:17,480 START COMING OFF MEDICAID SO 756 00:25:17,480 --> 00:25:18,920 THEY LOSE INSURANCE. 757 00:25:18,920 --> 00:25:20,240 THEY TRANSITION FROM PEDIATRIC 758 00:25:20,240 --> 00:25:22,320 TO ADULT CARE AND SO THEY LOSE 759 00:25:22,320 --> 00:25:24,120 THEIR CENTERS, AND THAT COULD BE 760 00:25:24,120 --> 00:25:25,480 ONE REASON, BUT WE WANTED TO 761 00:25:25,480 --> 00:25:27,120 SPEND A LITTLE BIT MORE TIME 762 00:25:27,120 --> 00:25:28,640 LOOKING AT SOCIAL DRIVERS OF 763 00:25:28,640 --> 00:25:33,000 HEALTH AS WELL, THAT ANALYSIS IS 764 00:25:33,000 --> 00:25:34,560 NEXT FOR US TO UNDERSTAND THE 765 00:25:34,560 --> 00:25:37,800 UTILIZATION PATTERN FOR THIS AGE 766 00:25:37,800 --> 00:25:42,760 GROUP. 767 00:25:42,760 --> 00:25:46,280 THEN WE LOOKED AT THE PRIMARY 768 00:25:46,280 --> 00:25:48,000 PAYER FOR THOSE VISITS IN 2017. 769 00:25:48,000 --> 00:25:49,520 IN OUR STATES, MEDICAID AND 770 00:25:49,520 --> 00:25:51,600 MEDICARE HAD THE HIGHEST SHARE 771 00:25:51,600 --> 00:25:54,560 OF PAYMENT BOTH FOR ED AND 772 00:25:54,560 --> 00:25:57,720 HOSPITAL ADMISSIONS, ED VISITS 773 00:25:57,720 --> 00:25:58,960 AND HOSPITAL ADMISSIONS PAYING 774 00:25:58,960 --> 00:26:00,680 FOR ALMOST 80% OF THE SERVICES 775 00:26:00,680 --> 00:26:02,240 RENDERED FOR PEOPLE WITH SICKLE 776 00:26:02,240 --> 00:26:08,680 CELL DISEASE IN THE STATE. 777 00:26:08,680 --> 00:26:10,320 WHAT THIS SLIDE IS SHOWING IS 778 00:26:10,320 --> 00:26:12,720 THE PAYIER BY AGE GROUP FOR BOTH 779 00:26:12,720 --> 00:26:14,360 ED VISITS AND HOSPITAL 780 00:26:14,360 --> 00:26:17,240 ADMISSIONS AND AS YOU CAN SEE 781 00:26:17,240 --> 00:26:20,360 MEDICATE STARTS TO TAPER OFF AT 782 00:26:20,360 --> 00:26:23,000 AGE 20 AS PEOPLE COME OFF 783 00:26:23,000 --> 00:26:24,400 MEDICAID AND THEN MEDICARE JUMPS 784 00:26:24,400 --> 00:26:26,960 IN AND COVERS FOR THAT COST AND 785 00:26:26,960 --> 00:26:29,000 A VERY FEW PERCENTAGES IS BEING 786 00:26:29,000 --> 00:26:33,720 COVERED BY OTHER PAYIE PAYERS LE 787 00:26:33,720 --> 00:26:35,240 PRIVATE INSURANCE, SELF PAY AND 788 00:26:35,240 --> 00:26:36,000 OTHER FEDERAL PROGRAMS. 789 00:26:36,000 --> 00:26:37,120 THOSE PATTERNS WERE SIMILAR TO 790 00:26:37,120 --> 00:26:39,080 THE PATTERNS REPORTED BY 791 00:26:39,080 --> 00:26:42,600 CALIFORNIA AND GEORGIA ON THE 792 00:26:42,600 --> 00:26:45,200 TIMING OF WHEN MEDICARE STARTS 793 00:26:45,200 --> 00:26:46,440 COVERING FOR PEOPLE WITH SICKLE 794 00:26:46,440 --> 00:26:50,440 CELL DISEASE AND WHEN MEDICAID 795 00:26:50,440 --> 00:26:52,080 TAPERS OFF SO THE PATTERNS LOOK 796 00:26:52,080 --> 00:27:01,600 SIMILAR TO OTHER STATES. 797 00:27:01,600 --> 00:27:03,720 A COUPLE EXAMPLES ON HOW WE'VE 798 00:27:03,720 --> 00:27:05,760 BEEN PUTTING SOME OF OUR DATA IN 799 00:27:05,760 --> 00:27:06,960 A RELATIVELY NEW PROGRAM, WE'VE 800 00:27:06,960 --> 00:27:07,960 BEEN ESTABLISHED FOR TWO YEARS 801 00:27:07,960 --> 00:27:09,600 AND WE'RE STILL WORKING ON 802 00:27:09,600 --> 00:27:10,680 GETTING OUR DATA TOGETHER, BUT 803 00:27:10,680 --> 00:27:12,880 WE ARE REALLY -- WE PRIDE 804 00:27:12,880 --> 00:27:14,200 OURSELF AS A STATE IN OUR 805 00:27:14,200 --> 00:27:15,400 COLLABORATIONS ACROSS THE AISLE 806 00:27:15,400 --> 00:27:16,480 WITH ALL THE DIFFERENT GROUPS 807 00:27:16,480 --> 00:27:17,920 THAT ARE INVOLVED IN SICKLE CELL 808 00:27:17,920 --> 00:27:19,240 DISEASE ACROSS THE STATE. 809 00:27:19,240 --> 00:27:22,400 AND SO WE ARE INVOLVED IN THE 810 00:27:22,400 --> 00:27:23,480 GOVERNOR'S COUNCIL WHICH HAS A 811 00:27:23,480 --> 00:27:25,480 MEDICAL RESEARCH COMMITTEE. 812 00:27:25,480 --> 00:27:27,200 THE MEDICAL RESEARCH COMMITTEE 813 00:27:27,200 --> 00:27:28,720 IDENTIFIED ED CARE AS A PRIORITY 814 00:27:28,720 --> 00:27:30,280 OF CARE FOR PEOPLE WITH SICKLE 815 00:27:30,280 --> 00:27:32,680 CELL DISEASE IN NORTH CAROLINA, 816 00:27:32,680 --> 00:27:37,120 AND THEY HAVE BEEN WANTING TO 817 00:27:37,120 --> 00:27:39,880 IMPLEMENT A STANDARDIZED PAIN 818 00:27:39,880 --> 00:27:42,360 MANAGEMENT PLAN ACROSS ALL EDs 819 00:27:42,360 --> 00:27:43,960 IN NORTH CAROLINA TO IMPROVE 820 00:27:43,960 --> 00:27:45,600 PAIN MANAGEMENT AND DECREASE 821 00:27:45,600 --> 00:27:46,400 HOSPITAL ADMISSIONS. 822 00:27:46,400 --> 00:27:47,520 THERE'S BEEN A LOT OF WORK 823 00:27:47,520 --> 00:27:48,960 ACROSS OUR STATE FROM DIFFERENT 824 00:27:48,960 --> 00:27:51,080 INVESTIGATORS TO TRY AND IMPROVE 825 00:27:51,080 --> 00:27:52,080 ED CARE ACROSS THE STATE AND 826 00:27:52,080 --> 00:27:53,440 THIS IS KIND OF THE NUMBER ONE 827 00:27:53,440 --> 00:27:54,280 COMPLAINT WE HEAR FROM OUR 828 00:27:54,280 --> 00:27:56,800 PATIENTS WHEN THEY EXPRESS THEIR 829 00:27:56,800 --> 00:27:57,880 SATISFACTION WITH CARE. 830 00:27:57,880 --> 00:27:59,520 SO THE GOVERNOR'S COUNCIL, THE 831 00:27:59,520 --> 00:28:00,840 MEDICAL RESEARCH COMMITTEE TOOK 832 00:28:00,840 --> 00:28:03,280 THIS AS A PRIORITY FOR THIS YEAR 833 00:28:03,280 --> 00:28:05,760 AND WHAT WE'RE DOING TO SUPPORT 834 00:28:05,760 --> 00:28:07,200 THIS INITIATIVE TO HELP THEM 835 00:28:07,200 --> 00:28:10,560 IMPLEMENT THE STANDARDIZED PLANS 836 00:28:10,560 --> 00:28:14,840 IS HELP IDENTIFY THE TOP 20 ED 837 00:28:14,840 --> 00:28:16,600 CENTERS WITH THE HIGHEST NUMBER 838 00:28:16,600 --> 00:28:18,360 OF ED VISITS IN IN ORDER 839 00:28:18,360 --> 00:28:19,080 CAROLINA. 840 00:28:19,080 --> 00:28:20,200 SO WE'RE PROVIDING THEM WITH A 841 00:28:20,200 --> 00:28:21,520 TABLE, THEY HAVE NOT RECEIVED 842 00:28:21,520 --> 00:28:22,720 THIS YET, SO OUR TEAM JUST 843 00:28:22,720 --> 00:28:24,800 FINISHED WORKING ON THIS LAST 844 00:28:24,800 --> 00:28:25,240 WEEK. 845 00:28:25,240 --> 00:28:27,080 WE'RE PROVIDING THEM WITH A LIST 846 00:28:27,080 --> 00:28:30,400 OF THE TOP 20 FACILITIES IN THE 847 00:28:30,400 --> 00:28:32,160 STATE THAT HAVE THE HIGHEST 848 00:28:32,160 --> 00:28:33,480 ADMISSIONS OR THE HIGHEST NUMBER 849 00:28:33,480 --> 00:28:34,520 OF ED VISITS. 850 00:28:34,520 --> 00:28:38,360 THIS WILL HELP THEM TARGET THOSE 851 00:28:38,360 --> 00:28:40,560 FACILITIES AND HELP EDUCATE AND 852 00:28:40,560 --> 00:28:42,520 IMPLEMENT THE ED PAIN MANAGEMENT 853 00:28:42,520 --> 00:28:43,840 PLAN. 854 00:28:43,840 --> 00:28:54,200 THIS IS ONE EXAMPLE. 855 00:28:54,200 --> 00:28:55,560 THE OTHER EXAMPLE IS WE'RE 856 00:28:55,560 --> 00:28:56,520 COLLABORATING WITH THE NORTH 857 00:28:56,520 --> 00:28:58,080 CAROLINA MEDICAID, THE DIVISION 858 00:28:58,080 --> 00:28:59,920 OF HEALTH BENEFITS. 859 00:28:59,920 --> 00:29:01,800 THEY HAVE LAUNCHED AN INITIATIVE 860 00:29:01,800 --> 00:29:07,480 TO IMPROVE ACCESS TO SC TO TCD 861 00:29:07,480 --> 00:29:10,200 SCREENING AND ELIMINATE BARRIERS 862 00:29:10,200 --> 00:29:14,040 TO TCD SCREENING AMONG PEOPLE 863 00:29:14,040 --> 00:29:15,160 WITH SICKLE CELL TO AGE 16 AND 864 00:29:15,160 --> 00:29:16,440 WE'RE WORKING CLOSELY WITH THEM 865 00:29:16,440 --> 00:29:18,520 TO HELP THEM ASSIST IN DEFINING 866 00:29:18,520 --> 00:29:20,360 THE COHORT AND PROPOSING 867 00:29:20,360 --> 00:29:21,520 LINKAGES WITH NEWBORN SCREENING 868 00:29:21,520 --> 00:29:24,760 SO THEY CAN HAVE AN APPROPRIATE 869 00:29:24,760 --> 00:29:26,720 UNDERSTANDING OF THE UTILIZATION 870 00:29:26,720 --> 00:29:28,400 OF TCD SCREENING AND SOME OF THE 871 00:29:28,400 --> 00:29:29,920 BARRIERS THAT ARE HAPPENING. 872 00:29:29,920 --> 00:29:31,960 SO WE'RE SUPPORTING MORE OF -- 873 00:29:31,960 --> 00:29:33,200 WE'RE PROVIDING MORE OF A 874 00:29:33,200 --> 00:29:34,920 TECHNICAL SUPPORT TO HELP 875 00:29:34,920 --> 00:29:37,240 UNDERSTAND THE PREVALENCE OF TCD 876 00:29:37,240 --> 00:29:38,200 SCREENING IN THE STATE AND WHAT 877 00:29:38,200 --> 00:29:41,080 COULD BE SOME OF THE BARRIERS. 878 00:29:41,080 --> 00:29:45,320 THE NORTH CARE LAY NORTH CAROLIS 879 00:29:45,320 --> 00:29:47,080 LAUNCHING THIS INITIATIVE TO 880 00:29:47,080 --> 00:29:50,920 HOPEFULLY HAVE MORE ACCESS TO 881 00:29:50,920 --> 00:29:52,120 TCD SCREENING AMONG THE 882 00:29:52,120 --> 00:29:53,320 PEDIATRIC POPULATION IN NORTH 883 00:29:53,320 --> 00:29:53,560 CAROLINA. 884 00:29:53,560 --> 00:29:55,280 ONE OF OUR PROJECTS IS REALLY 885 00:29:55,280 --> 00:29:57,920 FOCUSED ON ACUTE HEALTHCARE 886 00:29:57,920 --> 00:29:59,240 UTILIZATION AND ED VISITS AND 887 00:29:59,240 --> 00:30:01,120 THE OTHER IS FOCUSED ON 888 00:30:01,120 --> 00:30:02,640 PREVENTIVE CARE AND WE FEEL VERY 889 00:30:02,640 --> 00:30:03,520 FORTUNATE TO BE ABLE TO 890 00:30:03,520 --> 00:30:04,800 CONTRIBUTE SOME ASSISTANCE IN 891 00:30:04,800 --> 00:30:06,120 THOSE TWO IMPORTANT AREAS FOR 892 00:30:06,120 --> 00:30:07,320 OUR STATE. 893 00:30:07,320 --> 00:30:14,560 NEX 894 00:30:14,560 --> 00:30:17,960 SO IN SUMMARY, REALLY, THE DATA 895 00:30:17,960 --> 00:30:20,280 IS LIKE ANY OTHER SECONDARY 896 00:30:20,280 --> 00:30:22,440 DATASET WITH A LOT OF MISSING 897 00:30:22,440 --> 00:30:24,320 DATA, POTENTIAL DATA ERRORS AND 898 00:30:24,320 --> 00:30:26,360 DATA ACCURACY AND CHALLENGES AND 899 00:30:26,360 --> 00:30:27,160 LINKAGES BECAUSE THE DIFFERENT 900 00:30:27,160 --> 00:30:29,560 DATA COME WITH DIFFERENT PHI AND 901 00:30:29,560 --> 00:30:32,080 SOME DOES NOT ACTUALLY HAVE PHI 902 00:30:32,080 --> 00:30:33,720 SO WE HAVE A LOT OF CHALLENGES 903 00:30:33,720 --> 00:30:35,800 THERE, BUT THE OPPORTUNITIES ARE 904 00:30:35,800 --> 00:30:38,200 GREAT BECAUSE, ONE, THIS IS -- 905 00:30:38,200 --> 00:30:40,520 THESE MULTIPLE DATA SOURCES 906 00:30:40,520 --> 00:30:41,400 REPRESENT -- BETTER REPRESENT 907 00:30:41,400 --> 00:30:42,920 THE POPULATION. 908 00:30:42,920 --> 00:30:44,440 FOR EXAMPLE, WHEN YOU'RE LOOKING 909 00:30:44,440 --> 00:30:46,200 AT ALL STATE, ALL PAYER 910 00:30:46,200 --> 00:30:47,080 UTILIZATION, WE'RE ABLE TO LOOK 911 00:30:47,080 --> 00:30:49,160 AT ALL PAYERS AND ALL THE 912 00:30:49,160 --> 00:30:50,120 UTILIZATION THAT IS HAPPENING 913 00:30:50,120 --> 00:30:52,560 ACROSS THE STATE AND WE'RE NOT 914 00:30:52,560 --> 00:30:56,360 MISSING ANY AREAS. 915 00:30:56,360 --> 00:30:57,720 COMBINING MULTIPLE DATA SOURCES 916 00:30:57,720 --> 00:30:59,520 INCREASES THE COMPREHENSIVENESS 917 00:30:59,520 --> 00:31:03,360 OF THE DATA THAT WE HAVE IN THE 918 00:31:03,360 --> 00:31:04,800 DATASET, SUCH AS NEWBORN 919 00:31:04,800 --> 00:31:06,640 SCREENING, VITAL RECORDS, THE 920 00:31:06,640 --> 00:31:08,080 ABILITY TO COMBINE WITH OTHER 921 00:31:08,080 --> 00:31:10,160 SOCIAL DRIVERS OF HEALTH 922 00:31:10,160 --> 00:31:11,480 DATASETS ALSO. 923 00:31:11,480 --> 00:31:13,800 IT CAN HELP GUIDE INTERVENTIONS 924 00:31:13,800 --> 00:31:15,200 TO IMPROVE CARE AT THE STATE 925 00:31:15,200 --> 00:31:17,200 LEVEL SUCH AS THE EXAMPLES I 926 00:31:17,200 --> 00:31:18,360 HAVE PROVIDED. 927 00:31:18,360 --> 00:31:19,920 IT CAN HELP GUIDE POLICY TO 928 00:31:19,920 --> 00:31:20,920 IMPROVE CARE AT THE STATE LEVEL 929 00:31:20,920 --> 00:31:23,280 AND IT KEEPS -- IT CAN HELP US 930 00:31:23,280 --> 00:31:24,600 ENGAGE OTHER KEY PLAYERS AT THE 931 00:31:24,600 --> 00:31:27,480 STATE LEVEL, SUCH AS THE CBOs 932 00:31:27,480 --> 00:31:30,400 AND THE COUNCILS, THE GOVERNOR'S 933 00:31:30,400 --> 00:31:31,520 COUNCILS AND THE MEDICAL 934 00:31:31,520 --> 00:31:32,720 RESEARCH COMMITTEE THAT I HAVE 935 00:31:32,720 --> 00:31:39,400 MENTIONED. 936 00:31:39,400 --> 00:31:41,120 IN CLOSING, I WOULD LIKE TO 937 00:31:41,120 --> 00:31:41,920 ACKNOWLEDGE OUR TEAM. 938 00:31:41,920 --> 00:31:44,720 THIS IS A BIG TEAM BETWEEN THE 939 00:31:44,720 --> 00:31:46,400 DIVISION OF PUBLIC HEALTH, 940 00:31:46,400 --> 00:31:49,120 BETWEEN DUKE AND PIEDMONT HEALTH 941 00:31:49,120 --> 00:31:50,440 SERVICES, AND WE WORK VERY 942 00:31:50,440 --> 00:31:51,240 COLLABORATIVELY TO PUT THIS 943 00:31:51,240 --> 00:31:51,480 TOGETHER. 944 00:31:51,480 --> 00:31:55,480 I WANT TO ACKNOWLEDGE AND THANK 945 00:31:55,480 --> 00:32:00,520 CDC AND THE OTHER SPHAITS FOR OR 946 00:32:00,520 --> 00:32:01,600 THEIR SUPPORT AND A BIG SHOUT 947 00:32:01,600 --> 00:32:03,120 OUT TO OUR ADVISORY COUNCIL WHO 948 00:32:03,120 --> 00:32:04,520 KEEPS US FOCUSED ON WHAT IS 949 00:32:04,520 --> 00:32:05,720 IMPORTANT IN TERMS OF ANALYSES 950 00:32:05,720 --> 00:32:07,080 FOR OUR STATE AND WHO'S VERY 951 00:32:07,080 --> 00:32:08,560 ENGAGED IN HELPING US DETERMINE 952 00:32:08,560 --> 00:32:10,480 THOSE PRIORITIES. 953 00:32:10,480 --> 00:32:12,200 I WOULD BE -- I THINK THAT'S MY 954 00:32:12,200 --> 00:32:17,240 LAST SLIDE. 955 00:32:17,240 --> 00:32:19,240 I'D BE HAPPY TO ENTERTAIN ANY 956 00:32:19,240 --> 00:32:21,080 QUESTIONS, AND I'VE LEFT MY 957 00:32:21,080 --> 00:32:22,400 EMAIL ADDRESS OVER THERE SO 958 00:32:22,400 --> 00:32:23,760 PLEASE FEEL FREE TO REACH OUT IF 959 00:32:23,760 --> 00:32:27,040 YOU HAVE ANY QUESTIONS. 960 00:32:27,040 --> 00:32:28,640 >> THANK YOU SO MUCH, MARIAM. 961 00:32:28,640 --> 00:32:30,480 AND I DO THINK SEVERAL QUESTIONS 962 00:32:30,480 --> 00:32:32,720 CAME IN THE CHAT AND THE Q & A, 963 00:32:32,720 --> 00:32:36,720 AND WE'LL -- IF YOU WANT TO 964 00:32:36,720 --> 00:32:37,920 ANSWER THOSE OR IF THEY'RE ONES 965 00:32:37,920 --> 00:32:38,600 THAT AREN'T APPROPRIATE FOR YOU 966 00:32:38,600 --> 00:32:40,760 TO ANSWER, MARIAM, WE CAN SAVE 967 00:32:40,760 --> 00:32:41,880 THEM TO THE END AS WELL. 968 00:32:41,880 --> 00:32:42,960 >> I WILL, THANK YOU. 969 00:32:42,960 --> 00:32:43,760 >> THANKS SO MUCH. 970 00:32:43,760 --> 00:32:44,200 OKAY. 971 00:32:44,200 --> 00:32:45,840 SO WE'RE GOING TO MOVE ON AND 972 00:32:45,840 --> 00:32:50,280 NEXT WE HAVE JACKIE VALLE FROM 973 00:32:50,280 --> 00:32:55,120 THE CALIFORNIA SCDC PROGRAM. 974 00:32:55,120 --> 00:32:56,240 JHAQUE IS GOING TO TALK ABOUT 975 00:32:56,240 --> 00:32:57,840 HOW THIS PROGRAM CAN INFLUENCE 976 00:32:57,840 --> 00:32:59,000 ACCESS TO HEALTHCARE 977 00:32:59,000 --> 00:32:59,280 UTILIZATION. 978 00:32:59,280 --> 00:33:00,880 AS WE MENTIONED AT THE 979 00:33:00,880 --> 00:33:01,840 BEGINNING, IT'S GREAT TO COLLECT 980 00:33:01,840 --> 00:33:03,280 ALL THIS DATA BUT REALLY WHAT 981 00:33:03,280 --> 00:33:05,600 WE'RE TRYING TO DO IS USE TO 982 00:33:05,600 --> 00:33:06,760 MAKE A DIFFERENCE TO IMPROVE 983 00:33:06,760 --> 00:33:07,320 PEOPLE'S LIVES. 984 00:33:07,320 --> 00:33:09,160 ONE WAY THAT THIS IS VERY 985 00:33:09,160 --> 00:33:10,360 VALUABLE IS INCREASING ACCESS TO 986 00:33:10,360 --> 00:33:10,720 CARE. 987 00:33:10,720 --> 00:33:13,680 SO WITH THAT, JHAQUE, I WILL 988 00:33:13,680 --> 00:33:14,520 TURN IT OVER TO YOU. 989 00:33:14,520 --> 00:33:19,280 >> THANK YOU, EVERYONE. 990 00:33:19,280 --> 00:33:25,000 AS MARY MENTIONED, I'M WITH THE 991 00:33:25,000 --> 00:33:27,760 CALIFORNIA DATA COLLECTION 992 00:33:27,760 --> 00:33:29,120 PROGRAM AND I'M GOING TO BE 993 00:33:29,120 --> 00:33:33,680 TALKING ABOUT ACCESS TO 994 00:33:33,680 --> 00:33:34,360 HEALTHCARE. 995 00:33:34,360 --> 00:33:35,880 AS YOU'VE ALREADY HEARD FROM 996 00:33:35,880 --> 00:33:37,080 SEVERAL OTHER STATES ABOUT THE 997 00:33:37,080 --> 00:33:37,800 SICKLE CELL DATA COLLECTION 998 00:33:37,800 --> 00:33:39,920 PROGRAM I WON'T GO INTO TOO MUCH 999 00:33:39,920 --> 00:33:41,960 DETAIL BUT QUICKLY NOTING THE 1000 00:33:41,960 --> 00:33:42,960 CALIFORNIA PROGRAM HAS BEEN 1001 00:33:42,960 --> 00:33:43,920 AROUND FOR AROUND 10 YEARS WHEN 1002 00:33:43,920 --> 00:33:46,800 YOU INCLUDE THE PILOT PROGRAMS 1003 00:33:46,800 --> 00:33:49,120 OF THIS SURVEILLANCE SYSTEM SO 1004 00:33:49,120 --> 00:33:50,960 WE'VE HAD TIME TO TEST AND 1005 00:33:50,960 --> 00:33:54,680 VALIDATE OUR SYSTEM, PROCESSING 1006 00:33:54,680 --> 00:33:55,880 LINKAGE PROGRAMS A COUPLE TIMES 1007 00:33:55,880 --> 00:34:01,960 OVER. 1008 00:34:01,960 --> 00:34:03,600 BEFORE I GET INTO THE ANALYSIS, 1009 00:34:03,600 --> 00:34:04,840 FOR SOME CONTEXT IN TERMS OF THE 1010 00:34:04,840 --> 00:34:05,920 NUMBER OF PEOPLE WITH SICKLE 1011 00:34:05,920 --> 00:34:07,680 CELL DISEASE THAT WE ESTIMATE TO 1012 00:34:07,680 --> 00:34:09,040 BE IN CALIFORNIA, THERE'S TWO 1013 00:34:09,040 --> 00:34:09,680 COLUMNS HERE. 1014 00:34:09,680 --> 00:34:15,880 THE ONE ON THE LEFT, THE PEOPLE 1015 00:34:15,880 --> 00:34:18,720 WE HAVE THE MOST INFORMATION ON, 1016 00:34:18,720 --> 00:34:20,800 7,000, WE KNOW THEY WERE IN THE 1017 00:34:20,800 --> 00:34:22,040 STATE DURING THIS TIME PERIOD. 1018 00:34:22,040 --> 00:34:23,240 THE OTHER COLUMN INCLUDES PEOPLE 1019 00:34:23,240 --> 00:34:25,200 THAT WE KNOW ARE IN THE STATE AT 1020 00:34:25,200 --> 00:34:33,560 SOME POINT BUT CAN'T -- IT COULD 1021 00:34:33,560 --> 00:34:34,800 BE -- THEY HAVE PRIVATE 1022 00:34:34,800 --> 00:34:35,760 INSURANCE AND ARE NOT SEEKING 1023 00:34:35,760 --> 00:34:40,240 CARE OR MAYBE THEY MOVED -- TO 1024 00:34:40,240 --> 00:34:41,560 GIVE YOU A SENSE OF WHERE WE'RE 1025 00:34:41,560 --> 00:34:49,480 AT ON THAT. 1026 00:34:49,480 --> 00:34:51,560 SO THE GOAL OF THE PROGRAM IS 1027 00:34:51,560 --> 00:34:53,080 REALLY TO USE THE DATA TO 1028 00:34:53,080 --> 00:34:54,200 IMPROVE CARE OUTCOMES AND 1029 00:34:54,200 --> 00:34:55,520 QUALITY OF LIFE FOR THOSE WITH 1030 00:34:55,520 --> 00:34:56,040 SICKLE CELL DISEASE. 1031 00:34:56,040 --> 00:34:57,920 AND SO USING OUR DATA, WE WANTED 1032 00:34:57,920 --> 00:34:59,800 TO EXAMINE INDIVIDUALS WITH 1033 00:34:59,800 --> 00:35:01,000 SICKLE CELL DISEASE ACCESS TO 1034 00:35:01,000 --> 00:35:01,760 SPECIALTY CARE. 1035 00:35:01,760 --> 00:35:04,400 AS WE KNOW THIS POPULATION HAS 1036 00:35:04,400 --> 00:35:05,680 HISTORICALLY ENCOUNTERED 1037 00:35:05,680 --> 00:35:07,320 SIGNIFICANT SYSTEMIC AND 1038 00:35:07,320 --> 00:35:08,000 INSTITUTIONAL BARRIERS IN ACCESS 1039 00:35:08,000 --> 00:35:08,560 TO CARE. 1040 00:35:08,560 --> 00:35:09,840 SICKLE CELL DISEASE IS COMPLEX, 1041 00:35:09,840 --> 00:35:12,160 IT REQUIRES COORDINATION BETWEEN 1042 00:35:12,160 --> 00:35:14,120 PRIMARY SPECIALTY CARE INCLUDING 1043 00:35:14,120 --> 00:35:15,480 HEMATOLOGISTS TO REALLY PREVENT 1044 00:35:15,480 --> 00:35:16,280 COMPLICATIONS THAT REDUCE 1045 00:35:16,280 --> 00:35:23,680 QUALITY OF LIFE. 1046 00:35:23,680 --> 00:35:25,680 SO WITH THIS QUESTION OF ACCESS 1047 00:35:25,680 --> 00:35:27,520 TO CARE IN MIND WE WANTED TO 1048 00:35:27,520 --> 00:35:29,200 REFINE THAT A LITTLE BIT MORE TO 1049 00:35:29,200 --> 00:35:31,120 HOW MANY MEDICAID PATIENTS WITH 1050 00:35:31,120 --> 00:35:32,800 SICKLE CELL DISEASE SEE A 1051 00:35:32,800 --> 00:35:33,600 HEMATOLOGIST. 1052 00:35:33,600 --> 00:35:35,200 JUST TO NOTE, NOT ALL 1053 00:35:35,200 --> 00:35:36,200 HEMATOLOGISTS ARE EXPERTS IN 1054 00:35:36,200 --> 00:35:36,840 TREATING SICKLE CELL DISEASE AND 1055 00:35:36,840 --> 00:35:38,600 WE ALSO KNOW THERE CAN BE 1056 00:35:38,600 --> 00:35:39,600 PRIMARY CARE PROVIDERS THAT CAN 1057 00:35:39,600 --> 00:35:40,880 BE VERY KNOWLEDGEABLE AND 1058 00:35:40,880 --> 00:35:42,000 EXPERIENCED IN TREATING PATIENTS 1059 00:35:42,000 --> 00:35:42,760 WITH SICKLE CELL DISEASE SO THIS 1060 00:35:42,760 --> 00:35:45,280 IS REALLY LOOKING AT THIS ISSUE 1061 00:35:45,280 --> 00:35:49,320 ATITY MOST BASIC LEVEL. 1062 00:35:49,320 --> 00:35:58,920 AT ITS MOST BASIC LEVEL. 1063 00:35:58,920 --> 00:36:01,520 SO THE CALIFORNIA AND GEORGIA 1064 00:36:01,520 --> 00:36:05,440 TEAM LED THIS RETROSPECTIVE 1065 00:36:05,440 --> 00:36:06,520 COHORT ANALYSIS USING CALIFORNIA 1066 00:36:06,520 --> 00:36:08,320 AND GEORGIA DATA. 1067 00:36:08,320 --> 00:36:11,600 INCLUSION CRITERIA WERE 1068 00:36:11,600 --> 00:36:12,200 INDIVIDUALS WITH SICKLE CELL 1069 00:36:12,200 --> 00:36:14,640 DISEASE WITH THREE CONTINUOUS 1070 00:36:14,640 --> 00:36:16,400 MEDICAID COVERAGE, WITH NO 1071 00:36:16,400 --> 00:36:17,600 BREAKS IN COVERAGE WHEN WE WERE 1072 00:36:17,600 --> 00:36:18,280 TRYING TO DETERMINE WHETHER OR 1073 00:36:18,280 --> 00:36:19,040 NOT THEY SOUGHT CARE. 1074 00:36:19,040 --> 00:36:21,760 WE USED MEDICAID ENROLLMENT DATA 1075 00:36:21,760 --> 00:36:22,760 WHICH INCLUDES MONTHLY 1076 00:36:22,760 --> 00:36:23,880 INFORMATION ON COVERAGE, CLAIMS 1077 00:36:23,880 --> 00:36:24,960 DATA WHICH INCLUDES ALL CLAIMS 1078 00:36:24,960 --> 00:36:26,720 FOR INPATIENT, OUTPATIENT, 1079 00:36:26,720 --> 00:36:28,120 PHARMACY CLAIMS, ET CETERA. 1080 00:36:28,120 --> 00:36:32,200 AS WELL AS PROVIDER NPI NUMBERS. 1081 00:36:32,200 --> 00:36:35,040 WE THEN LINKED EACH CLAIM TO THE 1082 00:36:35,040 --> 00:36:36,800 NPI DATABASE TO OBTAIN THE 1083 00:36:36,800 --> 00:36:37,680 PROVIDER SPECIALTY IN ORDER TO 1084 00:36:37,680 --> 00:36:38,960 IDENTIFY THE HEMATOLOGIST AND 1085 00:36:38,960 --> 00:36:40,240 FOR EACH PERSON WE CALCULATED 1086 00:36:40,240 --> 00:36:42,400 THE TOTAL NUMBER OF HEMATOLOGIST 1087 00:36:42,400 --> 00:36:44,040 ENCOUNTERS WITHIN THE 2016 TO 1088 00:36:44,040 --> 00:36:54,360 2018 TIME PERIOD. 1089 00:36:55,160 --> 00:36:56,280 A COUPLE QUICK RESULTS. 1090 00:36:56,280 --> 00:36:59,040 THIS IS PEDIATRIC POPULATION, 1091 00:36:59,040 --> 00:37:00,360 YOU CAN SEE THE PROPORTION OF 1092 00:37:00,360 --> 00:37:02,320 PEDIATRIC PATIENTS IN OUR DATA 1093 00:37:02,320 --> 00:37:04,960 WHO HAD NO ENCOUNTERS WITH A 1094 00:37:04,960 --> 00:37:06,040 HEMATOLOGIST IN ANY OF THOSE 1095 00:37:06,040 --> 00:37:07,280 GIVEN YEARS WITHIN THAT 1096 00:37:07,280 --> 00:37:13,760 THREE-YEAR PERIOD, AROUND 30% IN 1097 00:37:13,760 --> 00:37:19,320 CALIFORNIA AND 20% IN GEORGIA. 1098 00:37:19,320 --> 00:37:21,160 AMONG THE ADULTS, THE PICTURE IS 1099 00:37:21,160 --> 00:37:22,240 NOT AS GREAT AS ALL. 1100 00:37:22,240 --> 00:37:23,920 YOU CAN SEE THE PROPORTION WITH 1101 00:37:23,920 --> 00:37:25,920 ZERO ENCOUNTERS IN ONE YEAR WAS 1102 00:37:25,920 --> 00:37:28,880 BETWEEN 63 AND 68% IN 1103 00:37:28,880 --> 00:37:30,480 CALIFORNIA. 1104 00:37:30,480 --> 00:37:34,440 SLIGHTLY BETTER BE NUMBERS IN 1105 00:37:34,440 --> 00:37:38,520 GEORGIA WITH 48 TO 49% HAVING AN 1106 00:37:38,520 --> 00:37:42,000 ENCOUNTER WITH A HEMATOLOGIST. 1107 00:37:42,000 --> 00:37:45,440 THOSE NUMBERS DID IMPROVE A 1108 00:37:45,440 --> 00:37:46,760 LITTLE BIT WHEN YOU LOOK AT THE 1109 00:37:46,760 --> 00:37:47,520 FULL THREE YEARS. 1110 00:37:47,520 --> 00:37:56,440 CALIFORNIA CROPP DROPPED DOWN T% 1111 00:37:56,440 --> 00:38:01,040 AND GEORGIA DOWN TO 34%. 1112 00:38:01,040 --> 00:38:03,080 SO WHEN WE WERE LOOKING AT THIS, 1113 00:38:03,080 --> 00:38:06,120 WE EXPECTED THERE WOULD BE SOME 1114 00:38:06,120 --> 00:38:07,160 CONCERN IN TERMS OF WHETHER OR 1115 00:38:07,160 --> 00:38:08,720 NOT THEY WERE SEEING ANY 1116 00:38:08,720 --> 00:38:09,720 HEMATOLOGISTS BUT THESE NUMBERS 1117 00:38:09,720 --> 00:38:12,320 WERE A LOT HIGHER THAN EXPECTED 1118 00:38:12,320 --> 00:38:17,280 IN TERMS OF THE PROPORTION OF 1119 00:38:17,280 --> 00:38:19,480 PERSONS WHO DIDN'T SEE A 1120 00:38:19,480 --> 00:38:20,440 HEMATOLOGIST ESPECIALLY AMONG 1121 00:38:20,440 --> 00:38:23,320 THE PEDIATRIC PATIENTS, ABOUT A 1122 00:38:23,320 --> 00:38:24,280 THIRD FOR CALIFORNIA AND A 1123 00:38:24,280 --> 00:38:25,960 QUARTER FOR GEORGIA WHO HAD NOT 1124 00:38:25,960 --> 00:38:28,040 SEEN A HEMATOLOGIST IN A YEAR. 1125 00:38:28,040 --> 00:38:29,040 SO THIS HIGHLIGHTS AN 1126 00:38:29,040 --> 00:38:30,440 OPPORTUNITY TO IMPROVE ACCESS TO 1127 00:38:30,440 --> 00:38:31,640 SPECIALTY CARE FOR PATIENTS WITH 1128 00:38:31,640 --> 00:38:35,280 SICKLE CELL DISEASE AND THE NEXT 1129 00:38:35,280 --> 00:38:36,280 SLIDE, WE WANT TO SHOW YOU AN 1130 00:38:36,280 --> 00:38:37,480 EXAMPLE OF HOW WE TAKE SOMETHING 1131 00:38:37,480 --> 00:38:39,080 LIKE THIS AND MAKE IT A LITTLE 1132 00:38:39,080 --> 00:38:41,000 BIT MORE TARGETED FOR OUR 1133 00:38:41,000 --> 00:38:47,880 POPULATION IN CALIFORNIA. 1134 00:38:47,880 --> 00:38:49,320 SO OUR FOLLOW-UP QUESTION TO 1135 00:38:49,320 --> 00:38:51,880 THIS WAS WHERE ARE EXPERIENCED 1136 00:38:51,880 --> 00:38:54,000 PROVIDERS LOCATED AND WHERE DO 1137 00:38:54,000 --> 00:38:57,280 PEOPLE WITH SICKLE CELL DISEASE 1138 00:38:57,280 --> 00:39:02,640 LIVE? 1139 00:39:02,640 --> 00:39:04,440 SO IN THIS, WE WANT TO TAKE A 1140 00:39:04,440 --> 00:39:06,840 CLOSER LOOK TO LOS ANGELES 1141 00:39:06,840 --> 00:39:07,160 COUNTY. 1142 00:39:07,160 --> 00:39:09,040 THEY HAVE APPROXIMATELY 1143 00:39:09,040 --> 00:39:10,560 9 MILLION PEOPLE WITH I IS ABOUT 1144 00:39:10,560 --> 00:39:11,560 A THIRD OF THE CALIFORNIA 1145 00:39:11,560 --> 00:39:14,640 POPULATION. 1146 00:39:14,640 --> 00:39:16,120 37% OF CALIFORNIANS LIVING WITH 1147 00:39:16,120 --> 00:39:18,120 SICKLE CELL DISEASE IN 1148 00:39:18,120 --> 00:39:20,160 LOS ANGELES COUNTY, SO THE 1149 00:39:20,160 --> 00:39:21,200 LARGEST AMONG ALL COUNTIES IN 1150 00:39:21,200 --> 00:39:21,960 CALIFORNIA. 1151 00:39:21,960 --> 00:39:24,520 LA COUNTY IS DIVIDED INTO EIGHT 1152 00:39:24,520 --> 00:39:26,960 SERVICE PLANNING AREAS TO KIND 1153 00:39:26,960 --> 00:39:28,920 OF DEVELOP AND PROVIDE TARGETED 1154 00:39:28,920 --> 00:39:30,640 PUBLIC HEALTH IN CLINICAL 1155 00:39:30,640 --> 00:39:31,080 SERVICES. 1156 00:39:31,080 --> 00:39:33,400 WE FOCUSED ON THIS SERVICE 1157 00:39:33,400 --> 00:39:36,360 PLANNING AREA SPA6, WHICH IS THE 1158 00:39:36,360 --> 00:39:37,240 SOUTH ONE. 1159 00:39:37,240 --> 00:39:38,880 BASICALLY IT HAS THE LARGEST 1160 00:39:38,880 --> 00:39:39,880 NUMBER OF INDIVIDUALS LIVING 1161 00:39:39,880 --> 00:39:41,720 WITH SICKLE CELL DISEASE IN LA 1162 00:39:41,720 --> 00:39:43,600 COUNTY AND HIGHEST AREA OF 1163 00:39:43,600 --> 00:39:46,440 SOCIAL VULNERABILITY. 1164 00:39:46,440 --> 00:39:49,520 THIS INDEX IDENTIFIES VULNERABLE 1165 00:39:49,520 --> 00:39:51,040 NEIGHBORHOODS BASED ON A VARIETY 1166 00:39:51,040 --> 00:39:53,240 OF FACTORS LIKE POVERTY, 1167 00:39:53,240 --> 00:39:55,360 UNEMPLOYMENT, HOUSING, 1168 00:39:55,360 --> 00:40:01,680 TRANSPORTATION ACCESS. 1169 00:40:01,680 --> 00:40:06,840 IT KIND OF DEPO GOES ON FROM TH. 1170 00:40:06,840 --> 00:40:09,040 THE INCLUSION CRITERIA WAS 1171 00:40:09,040 --> 00:40:11,440 SIMILAR TO THE PREVIOUS 1172 00:40:11,440 --> 00:40:17,280 ANALYSIS, PATIENTS HAVING HAD -- 1173 00:40:17,280 --> 00:40:18,800 DATA SOURCES REMAIN THE SAME BUT 1174 00:40:18,800 --> 00:40:20,320 WE ALSO INCLUDED EXPERIENCED 1175 00:40:20,320 --> 00:40:22,720 PROVIDERS AND EXPERIENCED 1176 00:40:22,720 --> 00:40:24,360 PROVIDER WAS EITHER HEMATOLOGIST 1177 00:40:24,360 --> 00:40:25,720 OR PRIMARY CARE PROVIDER THAT 1178 00:40:25,720 --> 00:40:27,720 SAW AT LEAST 20-PLUS MEDICAID 1179 00:40:27,720 --> 00:40:28,640 PATIENTS LIVING WITH SICKLE CELL 1180 00:40:28,640 --> 00:40:30,080 DISEASE IN THAT THREE-YEAR 1181 00:40:30,080 --> 00:40:30,560 PERIOD. 1182 00:40:30,560 --> 00:40:33,040 AND FROM THERE, WE WERE ABLE TO 1183 00:40:33,040 --> 00:40:34,800 IDENTIFY INDIVIDUALS IN SPA 1184 00:40:34,800 --> 00:40:39,080 6 WHO DID NOT SEE AN EXPERIENCED 1185 00:40:39,080 --> 00:40:40,960 PROVIDER. 1186 00:40:40,960 --> 00:40:42,840 SO THE GOAL OF THIS ANALYSIS 1187 00:40:42,840 --> 00:40:44,160 WHICH WE'RE STILL KIND OF 1188 00:40:44,160 --> 00:40:45,040 REFINING IN TERMS OF OUR 1189 00:40:45,040 --> 00:40:47,480 MATERIALS IS REALLY TO BE ABLE 1190 00:40:47,480 --> 00:40:48,760 TO PROVIDE -- WE CAN MAKE IT A 1191 00:40:48,760 --> 00:40:50,640 LITTLE BIT MORE ACCESSIBLE TO 1192 00:40:50,640 --> 00:40:53,160 OUR STAKEHOLDERS, NGOs AND 1193 00:40:53,160 --> 00:40:54,160 OTHER PARTNERS SO WE WANTED TO 1194 00:40:54,160 --> 00:40:55,480 BE ABLE TO VISUALLY SEE WHERE 1195 00:40:55,480 --> 00:40:56,800 THE EXPERIENCED PROVIDERS WERE 1196 00:40:56,800 --> 00:40:58,360 LOCATED IN COMPARISON TO THE 1197 00:40:58,360 --> 00:40:58,800 PATIENTS. 1198 00:40:58,800 --> 00:41:01,880 THE HIGHLIGHTED SHADED AREAS ARE 1199 00:41:01,880 --> 00:41:04,960 ALL THE ZIP CODES WITHIN SPA6. 1200 00:41:04,960 --> 00:41:07,400 IT GOES IN LIGHT TO DARK BASED 1201 00:41:07,400 --> 00:41:10,640 ON PROPORTION OF PATIENTS WITH 1202 00:41:10,640 --> 00:41:12,120 ENCOUNTERS WITH THE DARKEST ZIP 1203 00:41:12,120 --> 00:41:14,640 CODES HAVING THREE QUARTERS OF 1204 00:41:14,640 --> 00:41:24,480 THE PATIENTS WITH ZERO 1205 00:41:24,480 --> 00:41:25,000 ENCOUNTERS. 1206 00:41:25,000 --> 00:41:26,920 AS YOU CAN SEE, THE MAJORITY OF 1207 00:41:26,920 --> 00:41:28,000 EXPERIENCED PROVIDERS ARE 1208 00:41:28,000 --> 00:41:36,200 LOCATED OUTSIDE OF SPA6. 1209 00:41:36,200 --> 00:41:39,000 SO KIND OF IN CONCLUSION, WE 1210 00:41:39,000 --> 00:41:41,160 KNOW THAT SICKLE CELL DISEASE 1211 00:41:41,160 --> 00:41:46,200 LIKE ANY BLOOD DISORDER REQUIRES 1212 00:41:46,200 --> 00:41:50,440 SPECIALIZED EXPERTISE. 1213 00:41:50,440 --> 00:41:54,080 THOSE NOT SEEN BY HEMATOLOGISTS 1214 00:41:54,080 --> 00:41:56,280 IS ALARMINGLY HIGH EVEN AMONG 1215 00:41:56,280 --> 00:41:57,240 PEDIATRIC PATIENTS WHO ARE OFTEN 1216 00:41:57,240 --> 00:42:00,320 THOUGHT TO HAVE BETTER CARE, 1217 00:42:00,320 --> 00:42:01,760 BETTER ACCESS TO COMPREHENSIVE 1218 00:42:01,760 --> 00:42:03,840 CARE CENTERS, OVER HALF WERE 1219 00:42:03,840 --> 00:42:05,600 STILL NOT SEEN BY HEMATOLOGISTS 1220 00:42:05,600 --> 00:42:07,280 OR EXPERIENCED PRIMARY CARE 1221 00:42:07,280 --> 00:42:07,800 PHYSICIAN. 1222 00:42:07,800 --> 00:42:08,800 THIS WILL HIGHLIGHTS AN 1223 00:42:08,800 --> 00:42:11,960 OPPORTUNITY TO IMPROVE ACCESS TO 1224 00:42:11,960 --> 00:42:13,520 CARE FOR SICKLE CELL DISEASE 1225 00:42:13,520 --> 00:42:15,520 PATIENTS ENROLLED IN MEDICAID, 1226 00:42:15,520 --> 00:42:18,120 TO START DISCUSSION WITH POLICY 1227 00:42:18,120 --> 00:42:19,640 MAKERS AND OTHERS DUE TO 1228 00:42:19,640 --> 00:42:22,840 POSSIBLE BARRIERS TO CARE. 1229 00:42:22,840 --> 00:42:27,880 I THINK THAT'S THE LAST SLIDE I 1230 00:42:27,880 --> 00:42:35,960 HAVE. 1231 00:42:35,960 --> 00:42:37,320 THANKS TO ALL THE ADVISORY 1232 00:42:37,320 --> 00:42:38,200 BOARDS AND THOSE THAT HAVE 1233 00:42:38,200 --> 00:42:39,320 WORKED WITH US AND I THINK 1234 00:42:39,320 --> 00:42:40,080 THAT'S IT. 1235 00:42:40,080 --> 00:42:43,560 I'LL BE HAPPY TO ANSWER 1236 00:42:43,560 --> 00:42:43,840 QUESTIONS. 1237 00:42:43,840 --> 00:42:45,240 >> THANK YOU SO MUCH, JHAQUE. 1238 00:42:45,240 --> 00:42:46,640 AND THANKS TO EVERYONE FOR THE 1239 00:42:46,640 --> 00:42:47,400 WONDERFUL QUESTIONS THAT ARE 1240 00:42:47,400 --> 00:42:48,600 COMING IN THROUGH THE Q & A AND 1241 00:42:48,600 --> 00:42:50,520 THE CHAT. 1242 00:42:50,520 --> 00:42:51,760 WE'LL EITHER ANSWER THOSE ONLINE 1243 00:42:51,760 --> 00:42:53,480 OR GET TO THEM AT THE END FOR 1244 00:42:53,480 --> 00:42:54,520 SURE. 1245 00:42:54,520 --> 00:42:57,360 SO MOVING ON TO OUR NEXT 1246 00:42:57,360 --> 00:42:59,520 PRESENTATION, WE ARE LUCKY TO 1247 00:42:59,520 --> 00:43:03,120 HAVE TWO TEAM MEMBERS FROM THE 1248 00:43:03,120 --> 00:43:05,280 MICHIGAN SCDC TEAM. 1249 00:43:05,280 --> 00:43:06,320 DOM SMITH AND SARAH REEVES ARE 1250 00:43:06,320 --> 00:43:07,920 GOING TO BE CO-PRESENTING THE 1251 00:43:07,920 --> 00:43:09,040 NEXT INFORMATION. 1252 00:43:09,040 --> 00:43:11,760 AND THEY ARE GOING TO SHOW SOME 1253 00:43:11,760 --> 00:43:14,560 RECENT WORK THAT'S GOING ON IN 1254 00:43:14,560 --> 00:43:16,080 MICHIGAN, AND IT'S LOOKING AT 1255 00:43:16,080 --> 00:43:18,680 WAYS TO USE THIS DATA TO WORK 1256 00:43:18,680 --> 00:43:20,360 WITH HEALTHCARE POLICY AND 1257 00:43:20,360 --> 00:43:23,000 HEALTHCARE POLICY MAKERS TO 1258 00:43:23,000 --> 00:43:24,720 IMPROVE THE LIVES OF PEOPLE WITH 1259 00:43:24,720 --> 00:43:27,440 SICKLE CELL DISEASE. 1260 00:43:27,440 --> 00:43:31,200 SO THE PROJECT IS SPECIFIC TO 1261 00:43:31,200 --> 00:43:32,800 MICHIGAN, BUT I THINK ALL OF US 1262 00:43:32,800 --> 00:43:34,400 WHO ARE LISTENING ON THE PHONE 1263 00:43:34,400 --> 00:43:35,880 CAN IMAGINE THAT IT COULD 1264 00:43:35,880 --> 00:43:37,480 CERTAINLY BE EXTRAPOLATED TO 1265 00:43:37,480 --> 00:43:38,560 OTHER STATES THROUGHOUT THE U.S. 1266 00:43:38,560 --> 00:43:39,880 SO I WILL TURN IT OVER TO THE 1267 00:43:39,880 --> 00:43:40,480 MICHIGAN TEAM. 1268 00:43:40,480 --> 00:43:42,200 THANK YOU SO MUCH. 1269 00:43:42,200 --> 00:43:43,320 >> THANK YOU, MARY. 1270 00:43:43,320 --> 00:43:46,960 AND I WILL KICK US OFF. 1271 00:43:46,960 --> 00:43:49,000 SOL YOU'VE HEARD ABOUT HOW A LOT 1272 00:43:49,000 --> 00:43:51,000 OF THE STATES HAVE BEEN ABLE TO 1273 00:43:51,000 --> 00:43:53,000 ACCOMPLISH THIS WORK THROUGH A 1274 00:43:53,000 --> 00:43:54,760 GRANT OF PUBLIC HEALTH AUTHORITY 1275 00:43:54,760 --> 00:43:55,800 AND THAT'S EXACTLY WHAT WE'VE 1276 00:43:55,800 --> 00:44:00,240 BEEN ABLE TO ESTABLISH HERE IN 1277 00:44:00,240 --> 00:44:02,640 MICHIGAN THROUGH OUR PARTNERSHIP 1278 00:44:02,640 --> 00:44:04,440 WITH THE MICHIGAN DEPARTMENT OF 1279 00:44:04,440 --> 00:44:05,040 HEALTH AND HUMAN SERVICES AND 1280 00:44:05,040 --> 00:44:06,840 UNIVERSITY OF MICHIGAN. 1281 00:44:06,840 --> 00:44:10,880 AND OUR SCDC PROGRAM IS LED BY 1282 00:44:10,880 --> 00:44:11,520 DR. SARAH REEVES. 1283 00:44:11,520 --> 00:44:12,920 AND I'LL TALK ABOUT HOW WE'VE 1284 00:44:12,920 --> 00:44:17,280 BEEN ABLE TO IMPLEMENT THIS NEW 1285 00:44:17,280 --> 00:44:22,080 POLICY INITIATIVE UTILIZING OUR 1286 00:44:22,080 --> 00:44:23,240 CHILDREN'S SPECIALTY HEALTHCARE 1287 00:44:23,240 --> 00:44:24,360 SERVICES PROGRAM AND THE 1288 00:44:24,360 --> 00:44:26,480 SURVEILLANCE SYSTEM. 1289 00:44:26,480 --> 00:44:28,000 SO A KEY MESSAGE THAT WE WANTED 1290 00:44:28,000 --> 00:44:29,640 TO SHARE THAT YOU'VE HEARD 1291 00:44:29,640 --> 00:44:31,400 OTHERS EXPRESS AS WELL IS 1292 00:44:31,400 --> 00:44:32,560 UNDERSTANDING THE TRUE NUMBER OF 1293 00:44:32,560 --> 00:44:34,520 PEOPLE WITH SICKLE CELL DISEASE 1294 00:44:34,520 --> 00:44:35,840 IN A STATE, AS WELL AS WHERE 1295 00:44:35,840 --> 00:44:38,440 THEY LIVE, ARE ESSENTIAL 1296 00:44:38,440 --> 00:44:39,560 CONSIDERATIONS WHEN EXPANDING 1297 00:44:39,560 --> 00:44:42,440 POLICIES AND SERVICES FOR PEOPLE 1298 00:44:42,440 --> 00:44:46,320 WITH SICKLE CELL DISEASE. 1299 00:44:46,320 --> 00:44:48,200 AND IF THESE TWO THINGS AREN'T 1300 00:44:48,200 --> 00:44:49,320 ACCURATELY DETERMINED, THEN 1301 00:44:49,320 --> 00:44:50,520 THESE POLICIES THAT ARE 1302 00:44:50,520 --> 00:44:51,560 IMPLEMENTED MAY FALL SHORT OF 1303 00:44:51,560 --> 00:44:56,440 THEIR TRUE POTENTIAL. 1304 00:44:56,440 --> 00:44:58,680 SO AS WE START TO TALK ABOUT 1305 00:44:58,680 --> 00:44:59,880 THIS PARTICULAR CASE STUDY, I 1306 00:44:59,880 --> 00:45:01,280 WANTED TO GIVE JUST A LITTLE BIT 1307 00:45:01,280 --> 00:45:03,200 OF BACKGROUND ABOUT HOW WE GOT 1308 00:45:03,200 --> 00:45:03,600 HERE. 1309 00:45:03,600 --> 00:45:07,560 SO IN MICHIGAN, OUR CHILDREN 1310 00:45:07,560 --> 00:45:08,880 SPECIAL HEALTHCARE SERVICES 1311 00:45:08,880 --> 00:45:10,840 PROGRAM SERVES APPROXIMATELY 1312 00:45:10,840 --> 00:45:12,440 60,000 CHILDREN WITH SPECIAL 1313 00:45:12,440 --> 00:45:15,880 NEEDS, AND IT COVERS ABOUT 2700 1314 00:45:15,880 --> 00:45:19,960 DIFFERENT DIAGNOSES. 1315 00:45:19,960 --> 00:45:21,160 AND LONG TERM COVERAGE HAS ONLY 1316 00:45:21,160 --> 00:45:22,920 BEEN AVAILABLE FOR CHILDREN UP 1317 00:45:22,920 --> 00:45:28,440 TO THE AGE OF 21, BUT FOR 2 1318 00:45:28,440 --> 00:45:32,240 SPECIFIC CONDITIONS, CYSTIC 1319 00:45:32,240 --> 00:45:37,600 FIBROSIS AND HEMOPHILIA, 1320 00:45:37,600 --> 00:45:38,840 COVERAGE -- THIS EXPANDED 1321 00:45:38,840 --> 00:45:40,040 COVERAGE INCLUDES SERVICES FOR 1322 00:45:40,040 --> 00:45:43,840 MEDICAL CARE AND TREATMENT, CARE 1323 00:45:43,840 --> 00:45:44,760 COORDINATION, TRANSPORTATION, 1324 00:45:44,760 --> 00:45:47,480 MEDICAL HOMES AND ADDITIONAL 1325 00:45:47,480 --> 00:45:48,080 SUPPORT SERVICES. 1326 00:45:48,080 --> 00:45:50,960 AND THIS PROGRAM IS FUNDED BY 1327 00:45:50,960 --> 00:45:53,120 TITLE 5-DOLLARS, GENERAL FUND 1328 00:45:53,120 --> 00:45:56,920 DOLLARS AS WELL AS MEDICAID. 1329 00:45:56,920 --> 00:45:58,440 BUT FOR THE PAST COUPLE YEARS, 1330 00:45:58,440 --> 00:45:59,600 THERE HAVE BEEN ONGOING 1331 00:45:59,600 --> 00:46:01,240 CONVERSATIONS IN OUR STATE ON 1332 00:46:01,240 --> 00:46:03,120 HOW WE COULD EXPAND THESE 1333 00:46:03,120 --> 00:46:04,320 BENEFITS FOR THE SICKLE CELL 1334 00:46:04,320 --> 00:46:08,200 DISEASE POPULATION OVER THE AGE 1335 00:46:08,200 --> 00:46:09,480 OF 21 ACROSS THE LIFESPAN. 1336 00:46:09,480 --> 00:46:11,000 IN MICHIGAN, WE WERE 1337 00:46:11,000 --> 00:46:12,760 SUCCESSFULLY ABLE TO DO THAT 1338 00:46:12,760 --> 00:46:15,760 BEGINNING IN FQ22 BY CHANGING 1339 00:46:15,760 --> 00:46:18,800 OUR PUBLIC HEALTH CODE AND 1340 00:46:18,800 --> 00:46:21,000 ADDING SOME ADDITIONAL DOLLARS 1341 00:46:21,000 --> 00:46:23,080 FOR OTHER THINGS IN OUR STATE 1342 00:46:23,080 --> 00:46:26,920 WHICH I'M ABOUT TO TELL YOU 1343 00:46:26,920 --> 00:46:27,560 ABOUT. 1344 00:46:27,560 --> 00:46:30,880 SO EACH YEAR, WE HAVE 1345 00:46:30,880 --> 00:46:31,960 OPPORTUNITIES TO PRESENT TO OUR 1346 00:46:31,960 --> 00:46:33,160 GOVERNOR AND OUR STATE 1347 00:46:33,160 --> 00:46:34,520 LEGISLATURE WHAT WE CALL IN OUR 1348 00:46:34,520 --> 00:46:36,680 STATE PROPOSALS FOR CHANGE, AND 1349 00:46:36,680 --> 00:46:39,000 THEY'RE REALLY TRANSFORMATIONAL, 1350 00:46:39,000 --> 00:46:41,200 THEY'RE MEANT TO BE BIG IN SCOPE 1351 00:46:41,200 --> 00:46:43,480 AND TRANSFORMATIONAL 1352 00:46:43,480 --> 00:46:44,520 OPPORTUNITIES AND ONLY A FEW 1353 00:46:44,520 --> 00:46:45,440 ACTUALLY END UP MAKING IT 1354 00:46:45,440 --> 00:46:48,920 THROUGH OUR STATE LEGISLATURE 1355 00:46:48,920 --> 00:46:50,680 AND TO OUR GOVERNOR TO SIGN INTO 1356 00:46:50,680 --> 00:46:53,640 LAW. 1357 00:46:53,640 --> 00:46:55,560 AND THE THINGS WE WERE ABLE TO 1358 00:46:55,560 --> 00:46:59,040 DO IN RECEIVING A $6.7 MILLION 1359 00:46:59,040 --> 00:47:01,520 BUDGET TO DO IT WAS EXPANDING 1360 00:47:01,520 --> 00:47:02,400 CHILDREN SPECIAL HEALTHCARE 1361 00:47:02,400 --> 00:47:03,720 SERVICES FOR SICKLE CELL DISEASE 1362 00:47:03,720 --> 00:47:05,400 FOR INDIVIDUALS OVER THE AGE OF 1363 00:47:05,400 --> 00:47:05,560 21. 1364 00:47:05,560 --> 00:47:08,440 WE WERE ABLE TO INCLUDE DOLLARS 1365 00:47:08,440 --> 00:47:12,840 FOR OUR STATE COMMUNITY-BASED 1366 00:47:12,840 --> 00:47:14,080 ORGANIZATION, THE SICKLE CELL 1367 00:47:14,080 --> 00:47:14,840 DISEASE ASSOCIATION OF MICHIGAN, 1368 00:47:14,840 --> 00:47:17,040 AND WE WERE ALSO ABLE TO INCLUDE 1369 00:47:17,040 --> 00:47:19,200 GRANT DOLLARS TO SUPPORT SICKLE 1370 00:47:19,200 --> 00:47:23,280 CELL CLINICS IN OUR STATE. 1371 00:47:23,280 --> 00:47:25,120 AND WE INCLUDE A COMPONENT IN 1372 00:47:25,120 --> 00:47:27,760 THAT PROPOSAL FOR CHANGE, WE 1373 00:47:27,760 --> 00:47:29,280 BUILT IN THE SICKLE CELL 1374 00:47:29,280 --> 00:47:31,640 SURVEILLANCE SYSTEM, AND HOW WE 1375 00:47:31,640 --> 00:47:33,240 WOULD USE SCDC DATA ALONG THE 1376 00:47:33,240 --> 00:47:36,240 WAY TO EVALUATE THIS PROCESS OR 1377 00:47:36,240 --> 00:47:39,520 TO INFORM OUR ACTIVITIES, 1378 00:47:39,520 --> 00:47:41,360 PROJECTS AND POLICIES ALONG THE 1379 00:47:41,360 --> 00:47:41,840 WAY. 1380 00:47:41,840 --> 00:47:45,480 AND THAT LED TO WHAT YOU'RE 1381 00:47:45,480 --> 00:47:46,840 GOING TO HEAR ABOUT TODAY, THE 1382 00:47:46,840 --> 00:47:49,160 UNIVERSITY OF MICHIGAN POLICY 1383 00:47:49,160 --> 00:47:50,400 AND THE CASE STUDY THEY'RE GOING 1384 00:47:50,400 --> 00:47:51,160 TO TALK MORE ABOUT. 1385 00:47:51,160 --> 00:47:52,720 AND I JUST WANT TO ALSO SHARE 1386 00:47:52,720 --> 00:47:55,800 THAT I'M HAPPY TO REPORT ALSO IN 1387 00:47:55,800 --> 00:47:58,840 MICHIGAN, FOR THIS FISCAL YEAR 1388 00:47:58,840 --> 00:48:00,600 FOR THE 23 UPCOMING BUDGET, WE 1389 00:48:00,600 --> 00:48:03,480 WERE ABLE TO GET ANOTHER 1390 00:48:03,480 --> 00:48:06,320 $2.5 MILLION TO DEVELOP A SICKLE 1391 00:48:06,320 --> 00:48:07,000 CELL CENTER OF EXCELLENCE IN THE 1392 00:48:07,000 --> 00:48:10,720 CITY OF DETROIT, AND WE HAVE 1393 00:48:10,720 --> 00:48:14,160 ALSO BEEN ABLE TO MAXIMIZE THE 1394 00:48:14,160 --> 00:48:17,640 INITIAL SET OF MONEY THAT WE GOT 1395 00:48:17,640 --> 00:48:19,040 THROUGH MEDICAID MATCH, AND WE 1396 00:48:19,040 --> 00:48:21,520 ARE GOING TO BE ABLE TO EXPAND 1397 00:48:21,520 --> 00:48:23,680 THOSE CLINICAL GRANTS THAT WE 1398 00:48:23,680 --> 00:48:26,560 WERE -- WE FUNDED THREE GRANTS 1399 00:48:26,560 --> 00:48:28,120 INITIALLY, BUT WE'RE ABLE TO 1400 00:48:28,120 --> 00:48:29,240 MAXIMIZE OUR DOLLARS AND OUR 1401 00:48:29,240 --> 00:48:32,400 PLAN IS TO FUND MORE CLINICS IN 1402 00:48:32,400 --> 00:48:37,080 FY 23. 1403 00:48:37,080 --> 00:48:39,080 SO I WILL TURN IT OVER TO SARAH, 1404 00:48:39,080 --> 00:48:40,640 AND SHE IS GOING TO TELL YOU 1405 00:48:40,640 --> 00:48:43,520 ABOUT HOW WE'RE LEVERAGING THE 1406 00:48:43,520 --> 00:48:45,080 SICKLE CELL DISEASE SURVEILLANCE 1407 00:48:45,080 --> 00:48:48,240 SYSTEM TO MAXIMIZE ADULT 1408 00:48:48,240 --> 00:48:49,680 ENROLLMENT FOR CSHCS. 1409 00:48:49,680 --> 00:48:53,960 THANK YOU. 1410 00:48:53,960 --> 00:48:56,800 >> THANKS, DOM. 1411 00:48:56,800 --> 00:49:01,400 SO AS DOM MENTIONED, IT'S 1412 00:49:01,400 --> 00:49:04,240 AMAZING THAT THEY WERE ABLE TO 1413 00:49:04,240 --> 00:49:05,480 LEVERAGE THEIR RESOURCES AND 1414 00:49:05,480 --> 00:49:07,680 EXPAND THE PUBLIC HEALTH CODE TO 1415 00:49:07,680 --> 00:49:09,520 INCLUDE PEOPLE WITH SICKLE CELL 1416 00:49:09,520 --> 00:49:12,400 DISEASE AND CSHCS OVER THE AGE 1417 00:49:12,400 --> 00:49:13,640 OF 21, BUT WE NEED TO ENROLL 1418 00:49:13,640 --> 00:49:13,840 THEM. 1419 00:49:13,840 --> 00:49:15,880 SO TO BE ABLE TO ENROLL ADULTS 1420 00:49:15,880 --> 00:49:18,080 IN THESE NEWLY EXPANDED 1421 00:49:18,080 --> 00:49:19,120 BENEFITS, THE STATE NEEDS TO BE 1422 00:49:19,120 --> 00:49:21,680 ABLE TO KNOW WHO IS LIVING WITH 1423 00:49:21,680 --> 00:49:23,200 SCDC IN OUR STATE AND ALSO KNOW 1424 00:49:23,200 --> 00:49:24,440 HOW TO CONNECT WITH THOSE FOLKS 1425 00:49:24,440 --> 00:49:30,320 TO BE ABLE TO REACH OUT TO THEM 1426 00:49:30,320 --> 00:49:31,640 TO ENROLL THEM IN THE EXPANDED 1427 00:49:31,640 --> 00:49:31,920 BENEFITS. 1428 00:49:31,920 --> 00:49:33,320 THERE WERE A LOT OF WAYS THAT WE 1429 00:49:33,320 --> 00:49:35,520 COULD THINK ABOUT REACHING 1430 00:49:35,520 --> 00:49:36,840 ADULTS WITH SICKLE CELL DISEASE 1431 00:49:36,840 --> 00:49:40,280 AND ONE WAS THINKING ABOUT 1432 00:49:40,280 --> 00:49:41,680 REACHING OUT TO PEOPLE THAT HAD 1433 00:49:41,680 --> 00:49:43,320 PREVIOUSLY AND RECENTLY BEEN 1434 00:49:43,320 --> 00:49:46,520 ENROLLED IN CSHCS, SO MAYBE 1435 00:49:46,520 --> 00:49:49,160 PEOPLE AGES 21 TO 26-ISH THAT 1436 00:49:49,160 --> 00:49:51,040 HAD BEEN ENROLLED PREVIOUSLY BUT 1437 00:49:51,040 --> 00:49:54,440 HAD AGED OUT GIVEN THE AGE CAP 1438 00:49:54,440 --> 00:49:55,640 THAT HAD PREVIOUSLY BEEN IN 1439 00:49:55,640 --> 00:49:56,960 PLACE. 1440 00:49:56,960 --> 00:49:58,760 AND SO THAT WAS ABOUT 400 1441 00:49:58,760 --> 00:49:59,160 ADULTS. 1442 00:49:59,160 --> 00:50:03,360 SO IF WE WENT WITH THAT RECENT 1443 00:50:03,360 --> 00:50:04,880 CSHCS ENROLLMENT IN TERMS OF 1444 00:50:04,880 --> 00:50:06,080 OUTREACH TO ADULTS WITH SICKLE 1445 00:50:06,080 --> 00:50:07,560 CELL DISEASE, THERE WERE ONLY 1446 00:50:07,560 --> 00:50:09,400 ABOUT 400 ADULTS THAT WERE 1447 00:50:09,400 --> 00:50:10,120 ELIGIBLE. 1448 00:50:10,120 --> 00:50:11,040 BUT THERE'S OBVIOUSLY MORE 1449 00:50:11,040 --> 00:50:13,280 PEOPLE LIVING IN THE STATE THAT 1450 00:50:13,280 --> 00:50:14,680 ARE OVER THE AGE OF 21 WITH 1451 00:50:14,680 --> 00:50:15,760 SICKLE CELL DISEASE. 1452 00:50:15,760 --> 00:50:17,200 WE CAN THINK OF A LOT OF 1453 00:50:17,200 --> 00:50:19,000 DIFFERENT GROUPS, PEOPLE THAT 1454 00:50:19,000 --> 00:50:20,400 MOVED TO MICHIGAN AS AN ADULT SO 1455 00:50:20,400 --> 00:50:23,280 WERE NOT IN CSHCS PREVIOUSLY, 1456 00:50:23,280 --> 00:50:24,600 OLDER POPULATIONS, PEOPLE OVER 1457 00:50:24,600 --> 00:50:28,120 THE AGE OF, SAY, 26, 30, 40, AND 1458 00:50:28,120 --> 00:50:30,160 PEOPLE THAT WERE NEVER ENROLLED 1459 00:50:30,160 --> 00:50:32,880 SO EVEN A 21-YEAR-OLD OR 1460 00:50:32,880 --> 00:50:35,000 22-YEAR-OLD THAT HAD NEVER BEEN 1461 00:50:35,000 --> 00:50:37,840 ENROLLED IN CSHCS, THOSE GROUPS 1462 00:50:37,840 --> 00:50:39,400 OF INDIVIDUALS WITH SICKLE CELL 1463 00:50:39,400 --> 00:50:40,320 DISEASE WOULD NOT BE INCLUDED 1464 00:50:40,320 --> 00:50:41,800 WHEN WE WERE JUST DOING OUTREACH 1465 00:50:41,800 --> 00:50:44,680 TO THOSE THAT HAD HAD RECENT 1466 00:50:44,680 --> 00:50:51,480 CSHCS ENROLLMENT. 1467 00:50:51,480 --> 00:51:01,960 SO THE MICHIGAN SCDC MISCDC 1468 00:51:02,400 --> 00:51:03,960 PARTNERSHIP, TO ENHANCE OUTREACH 1469 00:51:03,960 --> 00:51:05,360 TO INDIVIDUALS WITH SICKLE CELL 1470 00:51:05,360 --> 00:51:07,400 DISEASE THAT WERE ELIGIBLE FOR 1471 00:51:07,400 --> 00:51:08,840 THESE NEWLY EXPANDED BENEFITS. 1472 00:51:08,840 --> 00:51:11,880 THIS WAS FUNDED AT THE 1473 00:51:11,880 --> 00:51:13,160 UNIVERSITY OF MICHIGAN AND OUR 1474 00:51:13,160 --> 00:51:14,360 TWO OVERALL GOALS WERE TO 1475 00:51:14,360 --> 00:51:15,560 IDENTIFY AND CHARACTERIZE 1476 00:51:15,560 --> 00:51:16,760 INDIVIDUALS THAT WERE ELIGIBLE 1477 00:51:16,760 --> 00:51:20,520 FOR EXPANDED BENEFITS, AND THEN 1478 00:51:20,520 --> 00:51:22,680 ASSIST MDHHS ENSURING THEY HAD 1479 00:51:22,680 --> 00:51:23,680 THE MOST RECENT INFORMATION 1480 00:51:23,680 --> 00:51:26,600 AVAILABLE TO CONNECT WITH PEOPLE 1481 00:51:26,600 --> 00:51:28,560 FOR OUTREACH MATERIALS TO HELP 1482 00:51:28,560 --> 00:51:32,400 ENROLL THEM IN EXPANDED 1483 00:51:32,400 --> 00:51:35,040 BENEFITS. 1484 00:51:35,040 --> 00:51:36,400 NUMEROUS PEOPLE ON THE CALL HAVE 1485 00:51:36,400 --> 00:51:38,360 EXPLAINED THE DATA SOURCES THAT 1486 00:51:38,360 --> 00:51:40,800 GO INTO SCDC, SO WE USED THE 1487 00:51:40,800 --> 00:51:41,800 COMBINATION OF ALL THOSE DATA 1488 00:51:41,800 --> 00:51:44,640 SOURCES TO IDENTIFY PEOPLE THAT 1489 00:51:44,640 --> 00:51:46,080 HAD SICKLE CELL DISEASE AND HAD 1490 00:51:46,080 --> 00:51:48,440 BEEN IN THE STATE AT SOME POINT 1491 00:51:48,440 --> 00:51:51,240 BETWEEN 2016 AND 2022. 1492 00:51:51,240 --> 00:51:53,240 AND ALSO WERE ALIVE AND OVER 20 1493 00:51:53,240 --> 00:51:57,880 YEARS OLD AT THE TIME OF CHSCS 1494 00:51:57,880 --> 00:51:58,320 EXPANSION. 1495 00:51:58,320 --> 00:52:00,080 AFTER WE IDENTIFIED PEOPLE THAT 1496 00:52:00,080 --> 00:52:01,400 WERE ELIGIBLE FOR EXPANDED 1497 00:52:01,400 --> 00:52:03,080 BENEFITS USING THIS MULTISOURCE 1498 00:52:03,080 --> 00:52:05,040 DATA, AND AGAIN THIS IS SO 1499 00:52:05,040 --> 00:52:06,240 IMPORTANT BECAUSE IT'S 1500 00:52:06,240 --> 00:52:07,480 IRRESPECTIVE OF INSURANCE STATUS 1501 00:52:07,480 --> 00:52:16,040 OR AGE, WE WORKED WITH MDHHS 1502 00:52:16,040 --> 00:52:18,440 DATA TO ESTABLISH CONNECTION 1503 00:52:18,440 --> 00:52:19,200 FORGS OUTREACH. 1504 00:52:19,200 --> 00:52:21,640 WHEN WE LEVERAGED THE SCDC DATA, 1505 00:52:21,640 --> 00:52:23,080 IF YOU REMEMBER WHEN WE WERE 1506 00:52:23,080 --> 00:52:24,440 JUST THINKING ABOUT REACHING OUT 1507 00:52:24,440 --> 00:52:32,120 TO PEOPLE WITH RECENT CSHCS 1508 00:52:32,120 --> 00:52:33,040 ENROLLMENT -- HOWEVER WHEN WE 1509 00:52:33,040 --> 00:52:36,720 COMBINED ALL THE DATA WE 1510 00:52:36,720 --> 00:52:39,800 IDENTIFIED AN ADDITIONAL 2,169 1511 00:52:39,800 --> 00:52:41,560 PEOPLE FOR A TOTAL OF JUST OVER 1512 00:52:41,560 --> 00:52:42,680 2500 ADULTS LIVING IN THE STATE 1513 00:52:42,680 --> 00:52:44,360 THAT WERE ELIGIBLE TO BE 1514 00:52:44,360 --> 00:52:48,160 ENROLLED IN THESE EXPANDED CSHCS 1515 00:52:48,160 --> 00:52:53,960 BENEFITS. 1516 00:52:53,960 --> 00:52:54,520 WE IDENTIFIED CONTACT 1517 00:52:54,520 --> 00:52:57,880 INFORMATION FOR 99.4% OF THOSE 1518 00:52:57,880 --> 00:52:59,960 ELIGIBLE PEOPLE OF THE 2500 1519 00:52:59,960 --> 00:53:02,480 PEOPLE. 1520 00:53:02,480 --> 00:53:04,200 AND FOR THE PEOPLE WE IDENTIFIED 1521 00:53:04,200 --> 00:53:07,600 CONTACT INFORMATION FOR, 80.4% 1522 00:53:07,600 --> 00:53:08,960 HAD INFORMATION THAT HAD BEEN 1523 00:53:08,960 --> 00:53:10,360 UPDATED AS RECENTLY AS 2022. 1524 00:53:10,360 --> 00:53:11,920 WE LOOKED AT A LOT OF DIFFERENT 1525 00:53:11,920 --> 00:53:12,600 DATA SOURCES FOR THIS. 1526 00:53:12,600 --> 00:53:14,360 WE LOOKED AT THE IMMUNIZATION 1527 00:53:14,360 --> 00:53:16,000 REGISTRY, WE LOOKED AT CLINIC 1528 00:53:16,000 --> 00:53:17,360 DATA TO UNDERSTAND THE ADDRESSES 1529 00:53:17,360 --> 00:53:19,120 AND OTHER THINGS, WE LOOKED AT 1530 00:53:19,120 --> 00:53:19,440 MEDICAID. 1531 00:53:19,440 --> 00:53:21,600 SO WHEN WE COMBINED ALL OF THOSE 1532 00:53:21,600 --> 00:53:23,760 SOURCES AND PICKED THE MOST 1533 00:53:23,760 --> 00:53:25,720 RECENT AND RELIABLE DATA, IT WAS 1534 00:53:25,720 --> 00:53:27,800 OVER 80% OF FOLKS HAD VERY 1535 00:53:27,800 --> 00:53:32,320 RECENT CONTACT INFORMATION. 1536 00:53:32,320 --> 00:53:33,760 SO WHAT WE WANTED TO EMPHASIZE 1537 00:53:33,760 --> 00:53:34,920 WITH THIS WAS THAT WHEN WE WERE 1538 00:53:34,920 --> 00:53:36,960 ABLE TO USE THE POPULATION-BASED 1539 00:53:36,960 --> 00:53:38,840 DATA, WE IDENTIFIED AN 1540 00:53:38,840 --> 00:53:39,560 ADDITIONAL 2100 PEOPLE WITH 1541 00:53:39,560 --> 00:53:41,440 SICKLE CELL DISEASE THAT WERE 1542 00:53:41,440 --> 00:53:43,520 ELIGIBLE FOR EXPANDED BENEFITS 1543 00:53:43,520 --> 00:53:46,440 BEYOND JUST RELYING ON RECENT 1544 00:53:46,440 --> 00:53:51,680 CSHCS ENROLLMENT. 1545 00:53:51,680 --> 00:53:52,720 IDENTIFYING MORE RECENT CONTACT 1546 00:53:52,720 --> 00:53:54,880 INFORMATION IS GOING TO ALLOW AN 1547 00:53:54,880 --> 00:53:55,800 ADDITIONAL LAYER OF CONNECTION 1548 00:53:55,800 --> 00:53:57,240 AND OUTREACH TO ADULTS IN TERMS 1549 00:53:57,240 --> 00:53:58,600 OF MAILINGS, COORDINATION WITH 1550 00:53:58,600 --> 00:54:00,640 LOCAL HEALTH DEPARTMENTS, AND 1551 00:54:00,640 --> 00:54:02,960 THIS IS TRUE PARTICULARLY FOR 1552 00:54:02,960 --> 00:54:03,440 ADULTS. 1553 00:54:03,440 --> 00:54:04,520 I THINK YOU'VE SEEN THROUGH THE 1554 00:54:04,520 --> 00:54:06,160 DATA THAT MULTIPLE STATES HAVE 1555 00:54:06,160 --> 00:54:07,080 ALREADY PRESENTED THAT ADULTS 1556 00:54:07,080 --> 00:54:09,200 CAN BE A TRICKIER POPULATION TO 1557 00:54:09,200 --> 00:54:13,880 CONNECT WITH, GIVEN THE FACT 1558 00:54:13,880 --> 00:54:15,760 THAT THE PATTERNS OF HEALTHCARE 1559 00:54:15,760 --> 00:54:16,080 UTILIZATION. 1560 00:54:16,080 --> 00:54:17,240 SO THIS IS AN IMPORTANT STEP 1561 00:54:17,240 --> 00:54:18,400 FORWARD FOR REACHING ADULTS WITH 1562 00:54:18,400 --> 00:54:19,120 SICKLE CELL DISEASE IN OUR 1563 00:54:19,120 --> 00:54:20,760 STATE. 1564 00:54:20,760 --> 00:54:23,520 AND THEN FINALLY, WITH SCDC IN 1565 00:54:23,520 --> 00:54:24,960 PLACE, OTHER STATES COULD USE 1566 00:54:24,960 --> 00:54:26,560 THIS METHODOLOGY TO BE ABLE TO 1567 00:54:26,560 --> 00:54:27,640 IDENTIFY MORE INDIVIDUALS WITH 1568 00:54:27,640 --> 00:54:29,320 SICKLE CELL DISEASE TO BE 1569 00:54:29,320 --> 00:54:30,800 CONNECTED WITH RESOURCES AND 1570 00:54:30,800 --> 00:54:34,040 IMPACTED BY NEW POLICIES. 1571 00:54:34,040 --> 00:54:35,480 AGAIN, KNOWING THE FULL 1572 00:54:35,480 --> 00:54:37,080 POPULATION OF PEOPLE WITH SICKLE 1573 00:54:37,080 --> 00:54:38,040 CELL DISEASE AND WHERE THEY LIVE 1574 00:54:38,040 --> 00:54:39,240 IS REALLY IMPORTANT WHEN 1575 00:54:39,240 --> 00:54:41,480 THINKING ABOUT THESE POLICIES, 1576 00:54:41,480 --> 00:54:43,600 OR ELSE THEY WILL NOT REACH 1577 00:54:43,600 --> 00:54:45,560 THEIR FULL POTENTIAL. 1578 00:54:45,560 --> 00:54:47,760 THIS IS JUST ONE CASE EXAMPLE OF 1579 00:54:47,760 --> 00:54:51,720 HOW WE CAN USE POPULATION-BASED 1580 00:54:51,720 --> 00:54:52,920 DATA AND COLLABORATIONS ACROSS 1581 00:54:52,920 --> 00:54:54,560 THE STATE. 1582 00:54:54,560 --> 00:54:58,840 THERE'S PLENTY OF ADDITIONAL 1583 00:54:58,840 --> 00:54:59,880 SCDC POLICY CONTRIBUTIONS. 1584 00:54:59,880 --> 00:55:01,600 THESE ARE JUST -- IT WAS ALMOST 1585 00:55:01,600 --> 00:55:02,840 OVERWHELMING TO TRY TO PUT THIS 1586 00:55:02,840 --> 00:55:04,920 IN A COUPLE SLIDES. 1587 00:55:04,920 --> 00:55:06,120 THE AMAZING WORK THAT'S BEEN 1588 00:55:06,120 --> 00:55:09,560 DONE IN THE LAST DECADE OR SO. 1589 00:55:09,560 --> 00:55:12,520 SSCDC PROVIDES DATA TO A WIDE 1590 00:55:12,520 --> 00:55:13,240 VARIETY OF ORGANIZATIONS. 1591 00:55:13,240 --> 00:55:15,680 ALL OF US HAVE EXPERIENCED THESE 1592 00:55:15,680 --> 00:55:16,520 REQUESTS TO STATE HEALTH 1593 00:55:16,520 --> 00:55:22,040 DEPARTMENT THS, LEGISLATORS, 1594 00:55:22,040 --> 00:55:25,520 NON-PRO FIPROFIT ORGANIZATIONS, 1595 00:55:25,520 --> 00:55:26,240 COMMUNITY-BASED ORGANIZATIONS. 1596 00:55:26,240 --> 00:55:27,680 I'M GOING TO PROVIDE SOME 1597 00:55:27,680 --> 00:55:28,880 EXAMPLES OF SOME OF THIS DATA 1598 00:55:28,880 --> 00:55:30,080 THAT HAS BEEN PROVIDED BACK UPON 1599 00:55:30,080 --> 00:55:30,520 REQUEST. 1600 00:55:30,520 --> 00:55:33,640 SO FOR EXAMPLE, IN MICHIGAN, WE 1601 00:55:33,640 --> 00:55:35,400 SPOKE TO SOME CONGRESS PEOPLE 1602 00:55:35,400 --> 00:55:36,640 REGARDING WHAT THE STATE WAS OF 1603 00:55:36,640 --> 00:55:41,040 SICKLE CELL DISEASE IN MICHIGAN. 1604 00:55:41,040 --> 00:55:42,320 SO WE PREPARED A FACT SHEET TO 1605 00:55:42,320 --> 00:55:44,080 SAY THIS IS HOW MANY PEOPLE WE 1606 00:55:44,080 --> 00:55:46,360 HAVE, TWO HAS BEEN ENROLLED IN 1607 00:55:46,360 --> 00:55:47,680 MEDICAID AND HEALTHCARE 1608 00:55:47,680 --> 00:55:48,640 UTILIZATION. 1609 00:55:48,640 --> 00:55:50,680 THIS IS A DATA BRIEF ABOUT 1610 00:55:50,680 --> 00:55:53,080 SICKLE CELL DISEASE IN GEORGIA 1611 00:55:53,080 --> 00:55:56,280 WHERE PEOPLE ARE LIVING, HOW OLD 1612 00:55:56,280 --> 00:55:58,720 FOLKS ARE, WHAT METRO ATLANTA 1613 00:55:58,720 --> 00:56:01,360 COUNTIES PEOPLE ARE LIVING IN. 1614 00:56:01,360 --> 00:56:03,120 I COULD GO ON AND ON WITH THESE, 1615 00:56:03,120 --> 00:56:04,360 BUT HERE'S JUST A COUPLE MORE 1616 00:56:04,360 --> 00:56:05,120 EXAMPLES. 1617 00:56:05,120 --> 00:56:06,120 MEDICAID COVERAGE PATTERNS FOR 1618 00:56:06,120 --> 00:56:07,200 PEOPLE WITH SICKLE CELL DISEASE 1619 00:56:07,200 --> 00:56:10,400 IN CALIFORNIA AND GEORGIA, CAN 1620 00:56:10,400 --> 00:56:14,240 REALLY THINK ABOUT PEOPLE 1621 00:56:14,240 --> 00:56:15,880 INSURED FOR AT LEAST ONE MONTH, 1622 00:56:15,880 --> 00:56:18,000 WHERE THOSE GAPS ARE AND HOW WE 1623 00:56:18,000 --> 00:56:21,320 CAN THINK ABOUT CLOSING THOSE 1624 00:56:21,320 --> 00:56:21,960 GAPS. 1625 00:56:21,960 --> 00:56:25,680 DATA FOR VASO -- ARE 1626 00:56:25,680 --> 00:56:26,680 SOCIOECONOMIC FACTORS RELATED TO 1627 00:56:26,680 --> 00:56:27,720 EMERGENCY DEPARTMENT UTILIZATION 1628 00:56:27,720 --> 00:56:28,840 FOR CALIFORNIANS WITH SICKLE 1629 00:56:28,840 --> 00:56:29,360 CELL DISEASE? 1630 00:56:29,360 --> 00:56:30,560 THERE'S A LOT OF DIFFERENT WAYS 1631 00:56:30,560 --> 00:56:32,920 THAT THIS DATA CAN BE LEVERAGED 1632 00:56:32,920 --> 00:56:34,360 TO PROVIDE ORGANIZATIONS WITH 1633 00:56:34,360 --> 00:56:37,320 THE EVIDENCE THAT THEY NEED TO 1634 00:56:37,320 --> 00:56:39,520 INFLUENCE POLICY. 1635 00:56:39,520 --> 00:56:40,920 AND AGAIN, THE POLICY 1636 00:56:40,920 --> 00:56:41,960 CONTRIBUTIONS GO PAST JUST THE 1637 00:56:41,960 --> 00:56:42,520 DATA. 1638 00:56:42,520 --> 00:56:44,400 THERE'S A LOT OF EXPERTISE ON 1639 00:56:44,400 --> 00:56:45,160 THESE SCDC TEAMS. 1640 00:56:45,160 --> 00:56:48,680 A LOT OF THE DATA AND 1641 00:56:48,680 --> 00:56:50,120 STAKEHOLDER EXPERTISE, FOLKS 1642 00:56:50,120 --> 00:56:54,360 HAVE SERVED WITH COMMITTEE FOR 1643 00:56:54,360 --> 00:56:56,960 THE STRATEGIC PLAN AND 1644 00:56:56,960 --> 00:56:57,840 BLUEPRINT, PARTICIPATION IN 1645 00:56:57,840 --> 00:56:59,800 GOVERNOR APPOINTED COUNCILS, YOU 1646 00:56:59,800 --> 00:57:04,320 HEARD MARIAM PAWK ABOUT THAT, T, 1647 00:57:04,320 --> 00:57:05,960 MEETINGS WITH LEGISLATORS AT 1648 00:57:05,960 --> 00:57:07,440 MULTIPLE LEVELS, SO REALLY THE 1649 00:57:07,440 --> 00:57:08,680 DATA AS WELL AS THE DEEP 1650 00:57:08,680 --> 00:57:09,960 KNOWLEDGE ON THESE SCDC TEAMS 1651 00:57:09,960 --> 00:57:11,760 AND WIDE VARIETY OF STAKEHOLDERS 1652 00:57:11,760 --> 00:57:13,560 INVOLVED CAN HELP INFORM 1653 00:57:13,560 --> 00:57:17,720 DIFFERENT POLICIES AND TARGETS. 1654 00:57:17,720 --> 00:57:20,200 SO AGAIN, I WANT TO TAKE A 1655 00:57:20,200 --> 00:57:25,080 MOMENT TO THANK MDHHS 1656 00:57:25,080 --> 00:57:28,360 COLLABORATORS, MARY, ISABELLE, 1657 00:57:28,360 --> 00:57:34,840 TERRA, KEVIN, MICHAELLA, AND 1658 00:57:34,840 --> 00:57:35,520 THANK YOU VERY MUCH FOR THE 1659 00:57:35,520 --> 00:57:37,720 OPPORTUNITY TO TALK ABOUT SCDC 1660 00:57:37,720 --> 00:57:38,320 IN MICHIGAN. 1661 00:57:38,320 --> 00:57:39,880 >> THANK YOU SO MUCH, DOM AND 1662 00:57:39,880 --> 00:57:40,560 SARAH. 1663 00:57:40,560 --> 00:57:43,080 I THINK WHAT IS GOING ON IN 1664 00:57:43,080 --> 00:57:45,560 MICHIGAN IS EXACTLY THE TYPE OF 1665 00:57:45,560 --> 00:57:47,880 PROJECT AND EXACTLY THE TYPE OF 1666 00:57:47,880 --> 00:57:49,400 ACTIVITY THAT THIS PROGRAM WAS 1667 00:57:49,400 --> 00:57:50,800 ESTABLISHED FOR, AND WE'RE JUST 1668 00:57:50,800 --> 00:57:52,080 SO DELIGHTED TO HAVE THE 1669 00:57:52,080 --> 00:57:54,760 OPPORTUNITY FOR THIS TO BE 1670 00:57:54,760 --> 00:57:55,040 HAPPENING. 1671 00:57:55,040 --> 00:57:56,520 SO MOVING ON TO OUR FINAL 1672 00:57:56,520 --> 00:57:58,920 PRESENTATION FOR TODAY FROM THE 1673 00:57:58,920 --> 00:58:01,560 GEORGIA SCDC TEAM, WE HAVE 1674 00:58:01,560 --> 00:58:02,280 DR. ANGIE SNYDER. 1675 00:58:02,280 --> 00:58:05,040 SHE HAS BEEN, WOULDING ON THIS 1676 00:58:05,040 --> 00:58:08,320 PROJECT FOR 11, 12 YEARS AT THIS 1677 00:58:08,320 --> 00:58:09,560 POINT, SO WE'VE BEEN ON THIS 1678 00:58:09,560 --> 00:58:10,920 ROAD TOGETHER FOR A VERY LONG 1679 00:58:10,920 --> 00:58:13,560 TIME. 1680 00:58:13,560 --> 00:58:15,560 AND ANGIE IS GOING TO SHARE SOME 1681 00:58:15,560 --> 00:58:17,000 OF OUR NEWER ACTIVITIES WITH YOU 1682 00:58:17,000 --> 00:58:18,680 THAT ARE QUITE EXCITING. 1683 00:58:18,680 --> 00:58:21,640 SO WE'VE HAD THIS CORE DATASET 1684 00:58:21,640 --> 00:58:22,800 THAT WE'VE BEEN WORKING WITH AND 1685 00:58:22,800 --> 00:58:24,000 WE'VE HAD KIND OF THESE CORE 1686 00:58:24,000 --> 00:58:25,600 SOURCES OF DATA FOR A LONG TIME 1687 00:58:25,600 --> 00:58:29,800 THAT ARE PART OF SCDC BUT WITH 1688 00:58:29,800 --> 00:58:31,600 THE RECENT PANDEMIC, WE WERE 1689 00:58:31,600 --> 00:58:35,200 ALSO ABLE TO LEVERAGE THAT CORE 1690 00:58:35,200 --> 00:58:37,920 DATA TO LINK WITH INFORMATION 1691 00:58:37,920 --> 00:58:42,200 SPECIFIC TO COVID-19 AND USE 1692 00:58:42,200 --> 00:58:44,320 THAT LINKAGE CAPABILITY AS A WAY 1693 00:58:44,320 --> 00:58:45,880 TO BETTER UNDERSTAND THE IMPACT 1694 00:58:45,880 --> 00:58:46,880 OF COVID ON THE SICKLE CELL 1695 00:58:46,880 --> 00:58:48,440 DISEASE POPULATION. 1696 00:58:48,440 --> 00:58:49,320 SO ANGIE IS GOING TO TALK ABOUT 1697 00:58:49,320 --> 00:58:51,960 A COUPLE OF DIFFERENT WAYS THAT 1698 00:58:51,960 --> 00:58:53,720 WE'RE EXPLORING THE DATA AND 1699 00:58:53,720 --> 00:58:55,080 BETTER UNDERSTANDING THE IMPACT 1700 00:58:55,080 --> 00:58:58,960 OF THE PANDEMIC FOR SICKLE CELL 1701 00:58:58,960 --> 00:59:01,120 DISEASE. 1702 00:59:01,120 --> 00:59:01,800 THANKS, ANGIE. 1703 00:59:01,800 --> 00:59:03,440 >> THANK YOU. 1704 00:59:03,440 --> 00:59:05,640 GREAT. 1705 00:59:05,640 --> 00:59:07,320 SO AS MARY SAID, I'M ANGIE 1706 00:59:07,320 --> 00:59:08,000 SNYDER. 1707 00:59:08,000 --> 00:59:09,680 I'M FROM GEORGIA STATE 1708 00:59:09,680 --> 00:59:11,200 UNIVERSITY, AND I'M THE PI OF 1709 00:59:11,200 --> 00:59:12,640 THE GEORGIA PROGRAM AND LIKE SHE 1710 00:59:12,640 --> 00:59:15,720 SAID, I'VE BEEN WORKING WITH 1711 00:59:15,720 --> 00:59:17,240 MARY AND CALIFORNIA FOR A LONG 1712 00:59:17,240 --> 00:59:18,520 TIME DOING ALL THIS WORK. 1713 00:59:18,520 --> 00:59:20,040 SO IT'S EXCITING TO SEE HOW 1714 00:59:20,040 --> 00:59:22,360 OTHER STATES ARE COMING ALONG 1715 00:59:22,360 --> 00:59:22,760 NOW. 1716 00:59:22,760 --> 00:59:24,160 IT'S REALLY EXCITING. 1717 00:59:24,160 --> 00:59:28,400 AND I'M GOING TO PRESENT THIS 1718 00:59:28,400 --> 00:59:29,720 WORK AND GEORGIA IS PART OF IT, 1719 00:59:29,720 --> 00:59:31,680 BUT IT HAS LOTS OF COLLABORATORS 1720 00:59:31,680 --> 00:59:38,440 FROM THESE OTHER STATES AS WELL. 1721 00:59:38,440 --> 00:59:40,160 SO AS MARY MENTIONED, WE HAVE 1722 00:59:40,160 --> 00:59:41,680 THREE ONGOING PROJECTS RIGHT 1723 00:59:41,680 --> 00:59:43,720 NOW, LOOKING AT SORT OF THE 1724 00:59:43,720 --> 00:59:47,560 INTERSECTION OF SICKLE CELL AND 1725 00:59:47,560 --> 00:59:48,120 COVID-19. 1726 00:59:48,120 --> 00:59:51,080 WE HAVE ONE PAPER THAT'S 1727 00:59:51,080 --> 00:59:51,920 COMPLETED AND I'M GOING TO TALK 1728 00:59:51,920 --> 00:59:53,520 TO YOU ABOUT THAT TODAY THAT'S 1729 00:59:53,520 --> 00:59:55,520 LOOKING AT THE OUTCOMES OF 1730 00:59:55,520 --> 00:59:56,720 COVID-19 IN PEOPLE WITH SICKLE 1731 00:59:56,720 --> 00:59:59,320 CELL DISEASE AND TRAIT. 1732 00:59:59,320 --> 01:00:03,440 AND THIS IS USING THE STATE'S 1733 01:00:03,440 --> 01:00:06,000 COVID-19 SURVEILLANCE SYSTEMS. 1734 01:00:06,000 --> 01:00:09,440 WE HAVE ANOTHER TWO PAPERS THAT 1735 01:00:09,440 --> 01:00:10,840 ARE IN PROCESS, AND I'LL SHARE 1736 01:00:10,840 --> 01:00:12,240 WITH YOU A LITTLE BIT OF 1737 01:00:12,240 --> 01:00:13,600 PRELIMINARY DATA FROM THOSE. 1738 01:00:13,600 --> 01:00:16,000 ONE LOOKS AT TRENDS AND 1739 01:00:16,000 --> 01:00:17,640 CHARACTERISTICS OF EMERGENCY 1740 01:00:17,640 --> 01:00:18,920 DEPARTMENT UTILIZATION BEFORE 1741 01:00:18,920 --> 01:00:21,120 AND DURING THE PANDEMIC, EARLY 1742 01:00:21,120 --> 01:00:21,920 PANDEMIC. 1743 01:00:21,920 --> 01:00:24,040 AND THEN THE OTHER LOOKS AT 1744 01:00:24,040 --> 01:00:25,720 ACCESS TO AND USE OF TELEHEALTH 1745 01:00:25,720 --> 01:00:30,000 DURING THE COVID-19 PANDEMIC. 1746 01:00:30,000 --> 01:00:32,400 I DON'T HAVE RESULTS YET, I'M 1747 01:00:32,400 --> 01:00:33,480 JUST GOING TO TELL YOU WHAT 1748 01:00:33,480 --> 01:00:40,480 WE'RE PLANNING TO DO. 1749 01:00:40,480 --> 01:00:42,440 AS MARY AND SEVERAL OF MY 1750 01:00:42,440 --> 01:00:46,040 COPRESENTERS MENTIONED, THIS 1751 01:00:46,040 --> 01:00:47,320 IS -- THE SCDC PROGRAM OFFERS 1752 01:00:47,320 --> 01:00:48,280 LOTS OF BENEFITS TO US. 1753 01:00:48,280 --> 01:00:50,360 ONE OF THOSE BEING THAT WE CAN 1754 01:00:50,360 --> 01:00:53,280 LINK WITH ADDITIONAL 1755 01:00:53,280 --> 01:00:54,280 SURVEILLANCE DATA IN THE STATE 1756 01:00:54,280 --> 01:00:57,520 TO LOOK AT DIFFERENT OUTCOMES OF 1757 01:00:57,520 --> 01:00:57,960 INTEREST. 1758 01:00:57,960 --> 01:01:00,960 AND I THINK SARAH MENTIONED ONE 1759 01:01:00,960 --> 01:01:03,920 OF THE OTHER DATASETS THAT SHE 1760 01:01:03,920 --> 01:01:05,280 AND I KNOW GEORGIA HAS ALSO 1761 01:01:05,280 --> 01:01:07,360 LINKED WITH IS OUR IMMUNIZATION 1762 01:01:07,360 --> 01:01:10,040 REGISTRIES. 1763 01:01:10,040 --> 01:01:11,600 BUT IT OFFERED US THE PERFECT 1764 01:01:11,600 --> 01:01:13,320 OPPORTUNITY TO LOOK AT AN 1765 01:01:13,320 --> 01:01:15,640 EMERGING THREAT LIKE COVID-19. 1766 01:01:15,640 --> 01:01:19,320 AND ANOTHER SURVEILLANCE SYSTEM 1767 01:01:19,320 --> 01:01:23,880 OR TRACKING SYSTEM THAT SOME 1768 01:01:23,880 --> 01:01:26,400 STATES ARE ALSO COLLECTING DATA 1769 01:01:26,400 --> 01:01:28,240 ON IS THE PRESCRIPTION DRUG 1770 01:01:28,240 --> 01:01:29,240 MONITORING PROGRAM. 1771 01:01:29,240 --> 01:01:30,440 YOU COULD THINK OF A LOT OF 1772 01:01:30,440 --> 01:01:31,400 DIFFERENT PLACES WHERE WE MIGHT 1773 01:01:31,400 --> 01:01:33,200 WANT TO LINK TO ADDITIONAL DATA 1774 01:01:33,200 --> 01:01:34,960 TO ANSWER SPECIFIC QUESTIONS 1775 01:01:34,960 --> 01:01:35,760 ABOUT INDIVIDUALS WITH SICKLE 1776 01:01:35,760 --> 01:01:37,800 CELL DISEASE. 1777 01:01:37,800 --> 01:01:39,880 THE OTHER THING I WANTED TO 1778 01:01:39,880 --> 01:01:42,720 STRESS ABOUT OUR DATA IS THE 1779 01:01:42,720 --> 01:01:43,920 LONGITUDINAL NATURE OF IT. 1780 01:01:43,920 --> 01:01:46,520 AND I KNOW THAT GEORGIA AND 1781 01:01:46,520 --> 01:01:49,240 CALIFORNIA HAVE THE MOST 1782 01:01:49,240 --> 01:01:50,320 LONGITUDINAL DATA BECAUSE WE'VE 1783 01:01:50,320 --> 01:01:51,840 BEEN PARTICIPATING IN THIS WORK 1784 01:01:51,840 --> 01:01:56,120 FOR THE LONGEST PERIOD OF TIME. 1785 01:01:56,120 --> 01:01:57,240 BUT ONE OF THESE STUDIES THAT 1786 01:01:57,240 --> 01:02:02,440 WE'RE DOING, THE ED1, WI ONE, WL 1787 01:02:02,440 --> 01:02:04,360 SHOW THE ABILITY TO TRACK 1788 01:02:04,360 --> 01:02:05,680 CHANGES IN CARE OVER TIME CAN 1789 01:02:05,680 --> 01:02:08,200 ALSO BE REALLY HELPFUL. 1790 01:02:08,200 --> 01:02:09,840 SO WE'RE GOING TO SHOW YOU HOW 1791 01:02:09,840 --> 01:02:12,040 WE'RE LOOKING PRE AND POST THE 1792 01:02:12,040 --> 01:02:13,320 COVID-19 PANDEMIC, BUT YOU COULD 1793 01:02:13,320 --> 01:02:15,200 IMAGINE A LOT OF OTHER THINGS 1794 01:02:15,200 --> 01:02:18,000 THAT YOU MIGHT WANT TO LOOK AT, 1795 01:02:18,000 --> 01:02:18,720 DIFFERENT POLICY CHANGES OR 1796 01:02:18,720 --> 01:02:20,480 DIFFERENT THINGS THAT ARE 1797 01:02:20,480 --> 01:02:22,360 HAPPENING, DOES THAT CHANGE THE 1798 01:02:22,360 --> 01:02:24,080 WAY INDIVIDUALS WITH SICKLE CELL 1799 01:02:24,080 --> 01:02:29,840 DISEASE ACCESS CARE. 1800 01:02:29,840 --> 01:02:31,920 AND I'LL JUST HIGHLIGHT BECAUSE 1801 01:02:31,920 --> 01:02:34,120 THE COVID-19 PANDEMIC BECAME 1802 01:02:34,120 --> 01:02:36,640 PART OF HEALTHCARE UTILIZATION 1803 01:02:36,640 --> 01:02:38,360 DATA, THEY CREATED A NEW 1804 01:02:38,360 --> 01:02:41,200 ADMINISTRATIVE CODE FOR IT 1805 01:02:41,200 --> 01:02:42,640 BECAUSE WE'RE COLLECTING 1806 01:02:42,640 --> 01:02:43,760 ADMINISTRATIVE DATA AS PART OF 1807 01:02:43,760 --> 01:02:45,160 OUR SURVEILLANCE PROJECT, WE CAN 1808 01:02:45,160 --> 01:02:47,160 ALSO USE THOSE CODES TO SORT OF 1809 01:02:47,160 --> 01:02:49,920 TRACK THE INTERACTION WITH 1810 01:02:49,920 --> 01:02:52,760 INDIVIDUALS WITH SICKLE CELL 1811 01:02:52,760 --> 01:02:54,640 DISEASE. 1812 01:02:54,640 --> 01:02:56,000 SO THIS IS THE FIRST PAPER I 1813 01:02:56,000 --> 01:02:57,440 MENTIONED. 1814 01:02:57,440 --> 01:03:00,160 THIS ONE IS COMPLETED, AND IT'S 1815 01:03:00,160 --> 01:03:01,880 BEEN SUBMITTED, IT'S UNDER 1816 01:03:01,880 --> 01:03:03,960 REVIEW, AND THIS IS LOOKING AT 1817 01:03:03,960 --> 01:03:07,240 OUTCOMES OF COVID-19 IN NEWBORN 1818 01:03:07,240 --> 01:03:08,920 SCREENING COHORTS OF SICKLE CELL 1819 01:03:08,920 --> 01:03:10,280 DISEASE AND TRAIT. 1820 01:03:10,280 --> 01:03:12,680 AND ALL THESE WONDERFUL 1821 01:03:12,680 --> 01:03:13,480 CO-AUTHORS HAVE DONE THIS WORK 1822 01:03:13,480 --> 01:03:23,000 WITH ME. 1823 01:03:23,000 --> 01:03:25,440 OBJECTIVES OF THIS STUDY WERE TO 1824 01:03:25,440 --> 01:03:33,640 DESCRIBE THE COHORTS OF 1825 01:03:33,640 --> 01:03:35,640 INDIVIDUALS FROM TWO STATEWIDE 1826 01:03:35,640 --> 01:03:39,520 NEWBORN SCREENING COHORTS A 1827 01:03:39,520 --> 01:03:40,520 TRADE AND SICKLE CELL DISEASE 1828 01:03:40,520 --> 01:03:42,520 WITH OUR STATE COVID-19 TRACKING 1829 01:03:42,520 --> 01:03:43,080 DATA. 1830 01:03:43,080 --> 01:03:47,960 AND WE DID THIS IN TWO STATES, 1831 01:03:47,960 --> 01:03:52,960 MICHIGAN AND GEORGIA, FROM 2020 1832 01:03:52,960 --> 01:03:53,720 TO 2021. 1833 01:03:53,720 --> 01:03:58,200 AND WE HAVE THREE COHORT OF 1834 01:03:58,200 --> 01:04:00,000 INDIVIDUALS, PERSONS WITH SICKLE 1835 01:04:00,000 --> 01:04:01,880 CELL DISEASE THAT ALSO REPORTED 1836 01:04:01,880 --> 01:04:05,400 A POSITIVE TEST FOR COVID-19, 1837 01:04:05,400 --> 01:04:06,680 PERSONS WITH TRAIT THAT REPORTED 1838 01:04:06,680 --> 01:04:10,640 A POSITIVE TEST WITH COVID-19, 1839 01:04:10,640 --> 01:04:13,880 AND THEN PERSONS WITH NORMAL 1840 01:04:13,880 --> 01:04:17,160 HEMOGLOBIN AND COVID-19. 1841 01:04:17,160 --> 01:04:18,440 SO FIRST WE JUST WANTED TO LOOK 1842 01:04:18,440 --> 01:04:22,280 AT RATES WITHIN THESE THREE 1843 01:04:22,280 --> 01:04:26,440 COHORTS OF HOSPITALIZATION AND 1844 01:04:26,440 --> 01:04:28,400 DEATH, AND THEN -- AND WITH 1845 01:04:28,400 --> 01:04:31,000 POSITIVE TESTS, AND THEN WE ALSO 1846 01:04:31,000 --> 01:04:33,000 WANTED TO RUN A MULTIVARIATE 1847 01:04:33,000 --> 01:04:35,840 MODEL WHERE WE ESTIMATED THE 1848 01:04:35,840 --> 01:04:37,760 ODDS OF HOSPITALIZATION AND 1849 01:04:37,760 --> 01:04:43,240 DEATH, AND FOR THIS -- FOR THE 1850 01:04:43,240 --> 01:04:44,280 MODELING, WE RESTRICTED IT TO 1851 01:04:44,280 --> 01:04:45,480 THE BLACK RACE ONLY BECAUSE 1852 01:04:45,480 --> 01:04:46,640 THERE'S SO FEW INDIVIDUALS IN 1853 01:04:46,640 --> 01:04:51,320 BOTH OF OUR STATES THAT WERE NOT 1854 01:04:51,320 --> 01:04:52,720 BLACK WHO HAD SICKLE CELL 1855 01:04:52,720 --> 01:05:00,800 DISEASE OR SICKLE CELL TRAIT. 1856 01:05:00,800 --> 01:05:02,400 SO AGAIN AS EVERYONE'S 1857 01:05:02,400 --> 01:05:05,920 MENTIONED, THERE IS NO 1858 01:05:05,920 --> 01:05:07,200 POPULATION-BASED REGISTRY FOR 1859 01:05:07,200 --> 01:05:09,000 SICKLE CELL DISEASE OR TRAIT, SO 1860 01:05:09,000 --> 01:05:10,200 WHILE ALL THE OTHER STUDIES THAT 1861 01:05:10,200 --> 01:05:16,640 HAVE BEEN DONE WITH SICKLE CELL 1862 01:05:16,640 --> 01:05:17,920 AND COVID-19 ARE REALLY, REALLY 1863 01:05:17,920 --> 01:05:20,320 IMPORTANT, ALL OF THEM ARE VERY 1864 01:05:20,320 --> 01:05:26,320 IMPORTANT, THEIR THEY'RE BIASED 1865 01:05:26,320 --> 01:05:27,960 IN CLINICAL CARE SETTINGS WHERE 1866 01:05:27,960 --> 01:05:30,160 PEOPLE ARE DOING RESEARCH. 1867 01:05:30,160 --> 01:05:33,200 THIS ONE IS -- THIS -- OUR 1868 01:05:33,200 --> 01:05:34,520 DATASET ALLOWS TO YOU LOOK AT 1869 01:05:34,520 --> 01:05:36,840 ALL INDIVIDUALS WITH SICKLE CELL 1870 01:05:36,840 --> 01:05:43,120 DISEASE TO GET POPULATION-BASED 1871 01:05:43,120 --> 01:05:43,560 ESTIMATES. 1872 01:05:43,560 --> 01:05:44,640 WHY IS THIS REALLY IMPORTANT, 1873 01:05:44,640 --> 01:05:46,400 ALSO TO LOOK AT FOLKS WITH 1874 01:05:46,400 --> 01:05:49,040 TRAIT, IS OF COURSE COVID-19 1875 01:05:49,040 --> 01:05:50,960 APPEARS TO HAVE A SEVERE EFFECT 1876 01:05:50,960 --> 01:05:54,040 ON THOSE WITH DISEASE, IT HAS 1877 01:05:54,040 --> 01:05:56,520 UNKNOWN EFFECTS ON THOSE WITH 1878 01:05:56,520 --> 01:05:59,520 TRAIT, AND THE PATHOPHYSIOLOGY 1879 01:05:59,520 --> 01:06:02,520 OF TRAIT MAY TARGET SOME OF THE 1880 01:06:02,520 --> 01:06:05,160 SAME SYSTEMS AND ORGANS AS 1881 01:06:05,160 --> 01:06:06,840 COVID-19 AND SO IT WAS IMPORTANT 1882 01:06:06,840 --> 01:06:09,520 FOR US TO UNDERSTAND IF 1883 01:06:09,520 --> 01:06:10,920 INDIVIDUALS WITH TRAIT WERE ALSO 1884 01:06:10,920 --> 01:06:13,000 AT INCREASED RISK. 1885 01:06:13,000 --> 01:06:14,760 AND WE ALSO WANTED TO SORT OF 1886 01:06:14,760 --> 01:06:16,480 TEST THE THEORY OF CAN WE LINK 1887 01:06:16,480 --> 01:06:20,200 THESE DATA SOURCES, AND WE DID 1888 01:06:20,200 --> 01:06:22,600 IT VERY COLLABORATIVELY IN BOTH 1889 01:06:22,600 --> 01:06:28,080 GEORGIA AND MICHIGAN WHEREAS 1890 01:06:28,080 --> 01:06:30,000 SARAH DESCRIBED IN MICHIGAN THEY 1891 01:06:30,000 --> 01:06:31,880 HAVE A VERY CLOSE RELATIONSHIP 1892 01:06:31,880 --> 01:06:33,400 WITH THEIR HEALTH DEPARTMENT 1893 01:06:33,400 --> 01:06:34,520 FOLKS, WE ALSO DO IN GEORGIA, 1894 01:06:34,520 --> 01:06:36,560 AND IT'S REALLY THE HEALTH 1895 01:06:36,560 --> 01:06:37,400 DEPARTMENT INDIVIDUALS WHO DID 1896 01:06:37,400 --> 01:06:40,040 THE LINKING BEHIND THEIR 1897 01:06:40,040 --> 01:06:40,560 FIREWALLS. 1898 01:06:40,560 --> 01:06:42,080 THEY DIDN'T ACTUALLY -- WE 1899 01:06:42,080 --> 01:06:45,040 DIDN'T HAVE TIME TO SHARE 1900 01:06:45,040 --> 01:06:47,120 COVID-19 DATA WITH US AT THE 1901 01:06:47,120 --> 01:06:48,640 UNIVERSITY. 1902 01:06:48,640 --> 01:06:51,920 SO ALL THE DATA ANALYSIS WAS 1903 01:06:51,920 --> 01:06:54,240 DONE BY THE INDIVIDUAL AT THE 1904 01:06:54,240 --> 01:06:54,960 HEALTH DEPARTMENTS. 1905 01:06:54,960 --> 01:06:57,600 AND CALIFORNIA HELPED TO 1906 01:06:57,600 --> 01:06:59,320 COORDINATE AND HELPED TO WRITE 1907 01:06:59,320 --> 01:07:09,040 THE PAPER. 1908 01:07:09,040 --> 01:07:10,240 SO A LITTLE BIT MORE ABOUT OUR 1909 01:07:10,240 --> 01:07:10,560 METHODS. 1910 01:07:10,560 --> 01:07:12,640 AS I MENTIONED, WE HAVE THREE 1911 01:07:12,640 --> 01:07:16,360 DISEASE -- WE HAVE THREE 1912 01:07:16,360 --> 01:07:17,160 COHORTS, ONE COHORT WITH SICKLE 1913 01:07:17,160 --> 01:07:18,280 CELL DISEASE, ONE WITH SICKLE 1914 01:07:18,280 --> 01:07:20,520 CELL TRAIT AND ONE WITH NORMAL 1915 01:07:20,520 --> 01:07:22,040 HEMOGLOBIN. 1916 01:07:22,040 --> 01:07:24,440 IN GEORGIA, WE REALLY ONLY HAVE 1917 01:07:24,440 --> 01:07:26,200 CHILDREN, IT'S REALLY ONLY A 1918 01:07:26,200 --> 01:07:28,480 PEDIATRIC COHORT BECAUSE OUR 1919 01:07:28,480 --> 01:07:31,440 NEWBORN SCREENING DATA ONLY GOES 1920 01:07:31,440 --> 01:07:34,480 BACK ELECTRONICALLY TO 2008. 1921 01:07:34,480 --> 01:07:37,240 AND SO WE NEEDED TO GO BACK TO 1922 01:07:37,240 --> 01:07:38,480 OUR NEWBORN SCREANING DATA 1923 01:07:38,480 --> 01:07:42,560 BSCREENING DATABECAUSE WE ALSO O 1924 01:07:42,560 --> 01:07:45,600 COLLECT INFORMATION ON 1925 01:07:45,600 --> 01:07:47,440 INDIVIDUALS WITH TRAIT BECAUSE 1926 01:07:47,440 --> 01:07:50,200 WE DON'T HAVE IT IN OUR 1927 01:07:50,200 --> 01:07:51,840 SURVEILLANCE SYSTEM AND ALSO 1928 01:07:51,840 --> 01:07:53,440 NEEDED TO CONFIRM INDIVIDUALS 1929 01:07:53,440 --> 01:07:56,200 HAD NORMAL HEMOGLOBIN. 1930 01:07:56,200 --> 01:07:58,680 MICHIGAN HAS SLIGHTLY MORE 1931 01:07:58,680 --> 01:07:59,640 HISTORICAL DATA, THEY WERE ABLE 1932 01:07:59,640 --> 01:08:01,880 TO GO BACK TO 1987 AND THEY HAVE 1933 01:08:01,880 --> 01:08:04,480 INDIVIDUALS AS OLD AS 33 IN 1934 01:08:04,480 --> 01:08:05,000 THEIR DATA. 1935 01:08:05,000 --> 01:08:06,880 YOU CAN SEE BASED ON OUR 1936 01:08:06,880 --> 01:08:12,440 RESULTS, MICHIGAN HAS MORE -- 1937 01:08:12,440 --> 01:08:16,160 LARGER POPULATIONS AND ALSO 1938 01:08:16,160 --> 01:08:19,120 LARGER OUTCOMES OF INTEREST LIKE 1939 01:08:19,120 --> 01:08:19,640 HOSPITALIZATION AND DEATH 1940 01:08:19,640 --> 01:08:21,200 BECAUSE THEY HAVE AN OLDER 1941 01:08:21,200 --> 01:08:25,200 COHORT THAN WE DO IN GEORGIA. 1942 01:08:25,200 --> 01:08:27,400 AND AGAIN WE LINK TO EACH OF OUR 1943 01:08:27,400 --> 01:08:28,640 STATES COVID-19 CONFIRMED CASE 1944 01:08:28,640 --> 01:08:33,400 AND THESE ARE -- THE STATES 1945 01:08:33,400 --> 01:08:34,920 QUICKLY GOT ORGANIZED AROUND 1946 01:08:34,920 --> 01:08:36,800 DOING SURVEILLANCE FOR COVID-19, 1947 01:08:36,800 --> 01:08:40,040 SO THESE ARE ALL PEOPLE THAT HAD 1948 01:08:40,040 --> 01:08:44,960 A POSITIVE PCR TEST FOR 1949 01:08:44,960 --> 01:08:45,720 COVID-19. 1950 01:08:45,720 --> 01:08:50,960 FROM MARCH 2ND, 2020 TO NOVEMBE. 1951 01:08:50,960 --> 01:08:52,720 SO WE TRIED NOT TO INCLUDE THE 1952 01:08:52,720 --> 01:08:54,160 OMICRON AND WE ALSO WANTED TO 1953 01:08:54,160 --> 01:08:58,160 GET THE RESULTS OUT SINCE WE'RE 1954 01:08:58,160 --> 01:08:59,440 STILL KIND OF IN THE MIDDLE OF 1955 01:08:59,440 --> 01:09:01,680 THE PANDEMIC. 1956 01:09:01,680 --> 01:09:03,640 WE CUT OFF DATA COLLECTION AT 1957 01:09:03,640 --> 01:09:08,760 NOVEMBER 30TH OF LAST YEAR. 1958 01:09:08,760 --> 01:09:11,400 AND AGAIN OUR LOGISTIC 1959 01:09:11,400 --> 01:09:16,200 REGRESSION MODELS FOR HOSPITAL 1960 01:09:16,200 --> 01:09:17,920 AND DEATH, WITH HE RESTRICTED TO 1961 01:09:17,920 --> 01:09:20,120 BLACK POPULATIONS, WE USED 1962 01:09:20,120 --> 01:09:21,680 GENERALIZED ESTIMATING EQUATION 1963 01:09:21,680 --> 01:09:22,840 MODELING IN MICHIGAN BECAUSE 1964 01:09:22,840 --> 01:09:25,360 THEY HAVE SOME REINFECTION DATA. 1965 01:09:25,360 --> 01:09:27,440 GEORGIA JUST HAD VERY MINIMAL 1966 01:09:27,440 --> 01:09:29,280 REINFECTION DATA, SO WE JUST -- 1967 01:09:29,280 --> 01:09:30,520 WE DIDN'T INCLUDE REINFECTIONS 1968 01:09:30,520 --> 01:09:32,880 AND WE USED A STANDARD LOGISTIC 1969 01:09:32,880 --> 01:09:42,280 REGRESSION MODEL. 1970 01:09:42,280 --> 01:09:47,720 SO THESE ARE OUR RESULTS. 1971 01:09:47,720 --> 01:09:49,280 THESE ARE DESCRIPTIVE STATISTICS 1972 01:09:49,280 --> 01:09:53,760 SO YOU CAN LOOK AT MALES AND 1973 01:09:53,760 --> 01:09:57,240 FEMALES AND BY TWO DIFFERENT AGE 1974 01:09:57,240 --> 01:09:58,320 COHORTS BECAUSE REMEMBER WE HAVE 1975 01:09:58,320 --> 01:09:59,320 A PRETTY YOUNG POPULATION. 1976 01:09:59,320 --> 01:10:00,800 AND YOU CAN SEE IT BY RACE, BUT 1977 01:10:00,800 --> 01:10:04,640 YOU CAN SEE THAT THE PREDOMINANT 1978 01:10:04,640 --> 01:10:06,680 NUMBER OF FOLKS IN BOTH THE 1979 01:10:06,680 --> 01:10:08,480 SICKLE CELL CATEGORIES ARE 1980 01:10:08,480 --> 01:10:11,640 PEOPLE THAT IDENTIFY AS BLACK. 1981 01:10:11,640 --> 01:10:13,840 SO WHEN WE DID THE MODELING 1982 01:10:13,840 --> 01:10:16,040 AGAIN, WE JUST DID IT WITH THE 1983 01:10:16,040 --> 01:10:17,200 BLACK POPULATIONS IN ALL. 1984 01:10:17,200 --> 01:10:19,480 BUT YOU CAN SEE THAT THE RATES 1985 01:10:19,480 --> 01:10:22,120 IN GEORGIA, THESE ARE THE 1986 01:10:22,120 --> 01:10:23,160 GEORGIA RESULTS, THEY LOOK 1987 01:10:23,160 --> 01:10:25,560 PRETTY SIMILAR IN TERMS OF THE 1988 01:10:25,560 --> 01:10:28,880 TOTAL NUMBER OF FOLKS THAT ARE 1989 01:10:28,880 --> 01:10:30,480 TESTING POSITIVE, THE PERCENTAGE 1990 01:10:30,480 --> 01:10:31,720 OF INDIVIDUALS TESTING POSITIVE, 1991 01:10:31,720 --> 01:10:34,120 AND THE PERCENTAGE OF THOSE THAT 1992 01:10:34,120 --> 01:10:36,000 ENDED UP HOSPITALIZED IN THE 1993 01:10:36,000 --> 01:10:38,800 TRAIT AND THE NORMAL HEMOGLOBIN, 1994 01:10:38,800 --> 01:10:40,320 THAT'S NOT EVEN CONTROLLING FOR 1995 01:10:40,320 --> 01:10:44,720 ANY OTHER COVARIATES, AND SICKLE 1996 01:10:44,720 --> 01:10:45,800 CELL DISEASE, OF COURSE THE RATE 1997 01:10:45,800 --> 01:10:47,560 IS MUCH HIGHER IN TERMS OF 1998 01:10:47,560 --> 01:10:49,880 TESTING POSITIVE AND IN TERMS OF 1999 01:10:49,880 --> 01:10:51,680 THE INDIVIDUALS THAT ARE 2000 01:10:51,680 --> 01:10:59,480 SUBSEQUENTLY HOSPITALIZED. 2001 01:10:59,480 --> 01:11:02,880 THESE ARE THE RATES FOR 2002 01:11:02,880 --> 01:11:03,200 MICHIGAN. 2003 01:11:03,200 --> 01:11:04,560 SOMEWHAT SIMILAR TO GEORGIA, THE 2004 01:11:04,560 --> 01:11:05,480 SICKLE CELL DISEASE POPULATION, 2005 01:11:05,480 --> 01:11:09,080 OF COURSE THE RATES ARE MUCH 2006 01:11:09,080 --> 01:11:09,320 HIGHER. 2007 01:11:09,320 --> 01:11:10,760 IT LOOKS LIKE IN MICHIGAN 2008 01:11:10,760 --> 01:11:13,600 OVERALL, THAT MORE INDIVIDUALS 2009 01:11:13,600 --> 01:11:20,640 ARE TESTING POSITIVE FOR 2010 01:11:20,640 --> 01:11:22,640 COVID-19, BUT IN THE NORMAL 2011 01:11:22,640 --> 01:11:24,280 HEMOGLOBIN GROUP, BUT SLIGHTLY 2012 01:11:24,280 --> 01:11:28,120 LESS OF THEM ARE BEING 2013 01:11:28,120 --> 01:11:29,320 HOSPITALIZED. 2014 01:11:29,320 --> 01:11:31,080 BUT LET'S ALSO GO TO THE NEXT 2015 01:11:31,080 --> 01:11:34,320 SLIDE AND LOOK AT THE 2016 01:11:34,320 --> 01:11:34,960 MULTIVARIATE MODELS. 2017 01:11:34,960 --> 01:11:38,680 SO THESE ARE THE ODDS RATIOS OF 2018 01:11:38,680 --> 01:11:42,760 HOSPITALIZATION AND MORTALITY IN 2019 01:11:42,760 --> 01:11:45,800 BOTH GEORGIA AND MICHIGAN. 2020 01:11:45,800 --> 01:11:48,080 AND SO -- WELL, AND I SHOULD SAY 2021 01:11:48,080 --> 01:11:49,840 MORTALITY IS ONLY IN MICHIGAN 2022 01:11:49,840 --> 01:11:52,040 BECAUSE GEORGIA JUST DID NOT 2023 01:11:52,040 --> 01:11:54,520 HAVE ENOUGH DEATHS TO MODEL. 2024 01:11:54,520 --> 01:11:57,680 SO THE TOP PART IS THE ODDS OF 2025 01:11:57,680 --> 01:11:59,680 HOSPITALIZATION IN GEORGIA AND 2026 01:11:59,680 --> 01:11:59,960 MICHIGAN. 2027 01:11:59,960 --> 01:12:05,480 YOU CAN SEE THAT IN THE -- THAT 2028 01:12:05,480 --> 01:12:07,400 THE RATES ARE -- COMPARING THE 2029 01:12:07,400 --> 01:12:10,400 SICKLE CELL POPULATION TO 2030 01:12:10,400 --> 01:12:11,760 INDIVIDUALS WITH NORMAL 2031 01:12:11,760 --> 01:12:12,760 HEMOGLOBIN, THAT THE RATES ARE 2032 01:12:12,760 --> 01:12:14,720 MUCH HIGHER, EVEN WHEN YOU 2033 01:12:14,720 --> 01:12:19,120 CONTROL FOR AGE AND SEX. 2034 01:12:19,120 --> 01:12:23,440 BUT THE ADJUSTED ODDS FOR TRAIT 2035 01:12:23,440 --> 01:12:28,680 ARE PRETTY MUCH RIGHT ON THE 1, 2036 01:12:28,680 --> 01:12:31,680 SO THEY'RE NOT SIGNIFICANT AT 2037 01:12:31,680 --> 01:12:32,000 ALL. 2038 01:12:32,000 --> 01:12:33,920 AND THEN ALSO THE SAME FOR 2039 01:12:33,920 --> 01:12:37,000 MICHIGAN WITH THE MORTALITY 2040 01:12:37,000 --> 01:12:41,480 DATA, YOU CAN SEE THE CONFIDENCE 2041 01:12:41,480 --> 01:12:44,200 INTERVALS OVERLAP WITH ONE. 2042 01:12:44,200 --> 01:12:45,960 SO THERE'S NO SIGNIFICANCE FOR 2043 01:12:45,960 --> 01:12:48,800 TRAIT IN TERMS OF ANY DIFFERENCE 2044 01:12:48,800 --> 01:12:50,440 IN HOSPITALIZATION OR MORTALITY, 2045 01:12:50,440 --> 01:12:53,520 BUT THERE IS A DIFFERENCE, A 2046 01:12:53,520 --> 01:12:54,640 HIGHER RATE FOR THOSE WITH 2047 01:12:54,640 --> 01:13:00,400 SICKLE CELL DISEASE. 2048 01:13:00,400 --> 01:13:02,160 SO THAT'S THE RESULTS OF THAT 2049 01:13:02,160 --> 01:13:02,600 STUDY. 2050 01:13:02,600 --> 01:13:05,320 I WILL ALSO GIVE YOU A PREVIEW 2051 01:13:05,320 --> 01:13:06,960 OF SOME PRELIMINARY DATA ON 2052 01:13:06,960 --> 01:13:11,560 TRENDS AND CHARACTERISTICS OF 2053 01:13:11,560 --> 01:13:13,720 EMERGENCY DEPARTMENT USE PRE AND 2054 01:13:13,720 --> 01:13:15,480 DURING THE COVID-19 PANDEMIC 2055 01:13:15,480 --> 01:13:16,880 AMONG INDIVIDUALS WITH SICKLE 2056 01:13:16,880 --> 01:13:17,360 CELL DISEASE. 2057 01:13:17,360 --> 01:13:19,760 FOR THIS STUDY, WE HAVE GEORGIA, 2058 01:13:19,760 --> 01:13:20,960 CALIFORNIA, MICHIGAN AND 2059 01:13:20,960 --> 01:13:25,720 TENNESSEE CO-AUTHORS. 2060 01:13:25,720 --> 01:13:28,320 SO AGAIN, THE GOAL OF THIS WORK 2061 01:13:28,320 --> 01:13:30,960 IS TO LOOK AT TRENDS AND 2062 01:13:30,960 --> 01:13:35,760 CHARACTERISTICS OF ED VISITS 2063 01:13:35,760 --> 01:13:41,240 DURING -- PRE AND DURING THE 2064 01:13:41,240 --> 01:13:42,000 PANDEMIC AMONG INDIVIDUALS WITH 2065 01:13:42,000 --> 01:13:42,680 SICKLE CELL DISEASE. 2066 01:13:42,680 --> 01:13:43,880 WE'RE LOOKING AT OVERALL RATES 2067 01:13:43,880 --> 01:13:46,480 OF ED UTILIZATION, AND THEN 2068 01:13:46,480 --> 01:13:48,440 DIFFERENCES ACROSS DIFFERENT 2069 01:13:48,440 --> 01:13:50,960 SOCIODEMOGRAPHIC 2070 01:13:50,960 --> 01:13:51,600 CHARACTERISTICS. 2071 01:13:51,600 --> 01:13:52,480 WHY IS THIS IMPORTANT? 2072 01:13:52,480 --> 01:13:53,880 ED IS REALLY AN IMPORTANT SOURCE 2073 01:13:53,880 --> 01:13:55,400 OF CARE FOR THOSE WITH SICKLE 2074 01:13:55,400 --> 01:13:56,840 CELL DISEASE, AND WE'RE NOT 2075 01:13:56,840 --> 01:14:00,880 REALLY SURE WHAT HAPPENED TO ED 2076 01:14:00,880 --> 01:14:03,400 UTILIZATION DURING THE PANDEMIC. 2077 01:14:03,400 --> 01:14:05,480 WE COULD ARGUE WHY IT MIGHT 2078 01:14:05,480 --> 01:14:07,760 INCREASE AND WE CAN ARGUE WHY IT 2079 01:14:07,760 --> 01:14:11,920 MIGHT DECREASE. 2080 01:14:11,920 --> 01:14:17,720 AGAIN, WE TOOK THE SICKLE CELL 2081 01:14:17,720 --> 01:14:20,920 COHORTS WERE DEFINED FOR EACH 2082 01:14:20,920 --> 01:14:23,360 STATE FOR ALL INDIVIDUALS THAT 2083 01:14:23,360 --> 01:14:24,480 MET OUR -- AND IF YOU REMEMBER 2084 01:14:24,480 --> 01:14:26,560 THE CASE DEFINITION, IT WOULD BE 2085 01:14:26,560 --> 01:14:29,960 CONFIRMED CASES AND THE PROBABLE 2086 01:14:29,960 --> 01:14:30,720 CASES. 2087 01:14:30,720 --> 01:14:34,080 FOR CALENDAR YEAR 2019. 2088 01:14:34,080 --> 01:14:37,480 WE WANTED TO MAKE SURE THEY WERE 2089 01:14:37,480 --> 01:14:40,760 INSURED BY MEDICAID IN EACH 2090 01:14:40,760 --> 01:14:41,960 STATE BECAUSE WE WANTED TO MAKE 2091 01:14:41,960 --> 01:14:43,160 SURE THEY WERE IN THE STATE 2092 01:14:43,160 --> 01:14:46,520 DURING THE WHOLE TIME PERIOD, 2093 01:14:46,520 --> 01:14:49,720 AND THEN WE ALSO -- SOME 2094 01:14:49,720 --> 01:14:51,040 FOLKS -- SOME STATES HAD A 2095 01:14:51,040 --> 01:14:53,960 LITTLE BIT OF DIFFICULTY WITH 2096 01:14:53,960 --> 01:14:58,120 THEIR E D-DAY TA. 2097 01:14:58,120 --> 01:14:59,560 D DATA. 2098 01:14:59,560 --> 01:15:03,280 SOME STATES USED THEIR ED DATA 2099 01:15:03,280 --> 01:15:05,200 FOR THIS, THE DATA MARIAM TALKED 2100 01:15:05,200 --> 01:15:06,320 ABOUT IN HER PRESENTATION. 2101 01:15:06,320 --> 01:15:08,280 SO WE WANTED TO MAKE SURE THEY 2102 01:15:08,280 --> 01:15:10,400 WERE INSURED BY MEDICAID FOR 18 2103 01:15:10,400 --> 01:15:13,080 OR MORE OF THE 24 MONTHS BETWEEN 2104 01:15:13,080 --> 01:15:14,000 JANUARY 2019 AND DECEMBER 2020. 2105 01:15:14,000 --> 01:15:15,480 WE LOOKED AT THE MONTHLY RATE OF 2106 01:15:15,480 --> 01:15:18,640 ANY ED UTILIZATION PER 1,000 2107 01:15:18,640 --> 01:15:19,280 INDIVIDUALS WITH SICKLE CELL 2108 01:15:19,280 --> 01:15:19,640 DISEASE. 2109 01:15:19,640 --> 01:15:21,280 SO WE'RE BASICALLY LOOKING AT 2110 01:15:21,280 --> 01:15:25,640 MONTHLY RATES OF ED USE 2111 01:15:25,640 --> 01:15:27,720 PRE-PANDEMIC, WHICH WOULD BE 2112 01:15:27,720 --> 01:15:30,560 JANUARY 2019 TO FEBRUARY 2020, 2113 01:15:30,560 --> 01:15:33,880 AND THEN DURING THE PANDEMIC, 2114 01:15:33,880 --> 01:15:35,480 AND I WILL SAY MARCH BUT IT'S 2115 01:15:35,480 --> 01:15:36,880 REALLY APRIL, MARCH IS KIND OF 2116 01:15:36,880 --> 01:15:40,160 IN THAT GREY ZONE. 2117 01:15:40,160 --> 01:15:43,640 APRIL TO DEES DECEMBER OF 2020. 2118 01:15:43,640 --> 01:15:46,720 AND WE USED AN INTERRUPTED TIME 2119 01:15:46,720 --> 01:15:48,360 SERIES, FOR THOSE OF YOU THAT 2120 01:15:48,360 --> 01:15:50,760 ARE METHODOLOGISTS, GENERALIZED 2121 01:15:50,760 --> 01:15:51,200 LINEAR MODEL. 2122 01:15:51,200 --> 01:15:57,120 WE USED POISSON LINK FUNCTION 2123 01:15:57,120 --> 01:16:01,240 AND OFFSET USING THE LOG OF THE 2124 01:16:01,240 --> 01:16:02,280 COHORT SIZE. 2125 01:16:02,280 --> 01:16:04,880 WE ALSO SEASONALLY ADJUSTED TO 2126 01:16:04,880 --> 01:16:06,840 LOOK AT COHORT TRENDS. 2127 01:16:06,840 --> 01:16:07,840 AGAIN, WHAT YOU'RE LOOKING AT 2128 01:16:07,840 --> 01:16:10,120 WHEN I SHOW YOU THE PRELIMINARY 2129 01:16:10,120 --> 01:16:11,200 RESULTS FOR CALIFORNIA AND 2130 01:16:11,200 --> 01:16:13,040 GEORGIA ARE THE MEDIAN TOTAL 2131 01:16:13,040 --> 01:16:17,640 NUMBER OF ED VISITS, AND WE ALSO 2132 01:16:17,640 --> 01:16:19,560 ARE GOING TO LOOK AT THEM BY 2133 01:16:19,560 --> 01:16:22,280 AGE, SEX, RACE AND ETHNICITY. 2134 01:16:22,280 --> 01:16:23,760 WE HAVE SICKLE CELL GENOTYPE FOR 2135 01:16:23,760 --> 01:16:26,920 SOME OF THEM. 2136 01:16:26,920 --> 01:16:29,320 AND WE HAVE PAYER FOR THE ED 2137 01:16:29,320 --> 01:16:29,920 VISITS. 2138 01:16:29,920 --> 01:16:33,880 AND THEN WE ALSO PLAN TO LOOK AT 2139 01:16:33,880 --> 01:16:35,560 THOSE THAT RESULTED IN INPATIENT 2140 01:16:35,560 --> 01:16:37,880 ADMISSIONS TO THE HOSPITAL, ALSO 2141 01:16:37,880 --> 01:16:39,840 THOSE THAT WERE TREAT AND 2142 01:16:39,840 --> 01:16:42,000 RELEASE VISIT, AND THEN THE FIVE 2143 01:16:42,000 --> 01:16:43,640 MOST FREQUENTLY OCCURRING 2144 01:16:43,640 --> 01:16:47,480 PRIMARY DISCHARGE DIAGNOSES. 2145 01:16:47,480 --> 01:16:49,240 WE CAN ALSO LOOK AT WHETHER THE 2146 01:16:49,240 --> 01:16:52,480 HOSPITALIZATION WAS DUE TO 2147 01:16:52,480 --> 01:16:54,360 COVID-19 OR NOT, OR WHETHER THE 2148 01:16:54,360 --> 01:16:57,040 ED VISIT WAS DUE TO COVID-19 OR 2149 01:16:57,040 --> 01:16:59,800 NOT. 2150 01:16:59,800 --> 01:17:01,480 SO AGAIN, THESE ARE JUST 2151 01:17:01,480 --> 01:17:01,760 PRELIMINARY. 2152 01:17:01,760 --> 01:17:03,120 WE ONLY HAVE RESULT FROM GEORGIA 2153 01:17:03,120 --> 01:17:06,600 AND CALIFORNIA. 2154 01:17:06,600 --> 01:17:07,760 LET ME SEE IF I CAN EXPLAIN TO 2155 01:17:07,760 --> 01:17:09,200 YOU WHAT YOU'RE SEEING. 2156 01:17:09,200 --> 01:17:15,720 AGAIN, THE LINES ARE SQUIGGLY 2157 01:17:15,720 --> 01:17:16,760 BECAUSE THEY'RE ADJUSTED AND 2158 01:17:16,760 --> 01:17:19,000 THERE IS SOME SEASONALITY TO ED 2159 01:17:19,000 --> 01:17:19,360 USE. 2160 01:17:19,360 --> 01:17:22,240 BUT YOU CAN SEE THE LITTLE -- 2161 01:17:22,240 --> 01:17:24,400 THE BLACK LINE IS WHAT WAS GOING 2162 01:17:24,400 --> 01:17:26,040 ON PRE-PANDEMIC. 2163 01:17:26,040 --> 01:17:30,080 THE RED LINE IS ONCE THE 2164 01:17:30,080 --> 01:17:30,720 PANDEMIC STARTED. 2165 01:17:30,720 --> 01:17:32,480 THE DOTTED LINE WOULD BE WHAT WE 2166 01:17:32,480 --> 01:17:35,200 WOULD EXPECT IF THERE WAS NO 2167 01:17:35,200 --> 01:17:37,280 DISRUPTION, IF THERE WAS NO 2168 01:17:37,280 --> 01:17:38,920 COVID-19 PANDEMIC, THAT WOULD BE 2169 01:17:38,920 --> 01:17:40,760 WHAT WE WOULD EXPECT TO SEE 2170 01:17:40,760 --> 01:17:43,080 BASED ON THE SEASONAL TREND. 2171 01:17:43,080 --> 01:17:51,000 GOING ON. 2172 01:17:51,000 --> 01:17:51,920 SO YOU CAN SEE IT'S INTERESTING 2173 01:17:51,920 --> 01:17:53,320 THAT THE SLOPES OF THE LINES IN 2174 01:17:53,320 --> 01:17:54,080 CALIFORNIA AND GEORGIA DON'T 2175 01:17:54,080 --> 01:17:54,760 EVEN LOOK THE SAME. 2176 01:17:54,760 --> 01:17:58,360 SO BOTH OF THEM CLEARLY, WHEN 2177 01:17:58,360 --> 01:17:59,840 THE PANDEMIC SORT OF HIT IN 2178 01:17:59,840 --> 01:18:02,160 APRIL, THEY HAD A DISRUPTION. 2179 01:18:02,160 --> 01:18:07,640 THERE WAS A LOT LESS ED VISITS, 2180 01:18:07,640 --> 01:18:09,040 AND THEN IN GEORGIA IT LACKS 2181 01:18:09,040 --> 01:18:10,760 LIKE THEY WERE APPROACHING BY 2182 01:18:10,760 --> 01:18:12,320 THE END OF LAST YEAR, THEY WERE 2183 01:18:12,320 --> 01:18:15,840 APPROACHING BACK TO NORMAL, BUT 2184 01:18:15,840 --> 01:18:17,720 IN CALIFORNIA, THEY LOOK LIKE 2185 01:18:17,720 --> 01:18:19,440 THEY'RE GOING THE OPPOSITE 2186 01:18:19,440 --> 01:18:23,080 DIRECTION, THAT THERE'S EVEN 2187 01:18:23,080 --> 01:18:25,160 LESS FOLKS AT THE END OF LAST 2188 01:18:25,160 --> 01:18:29,080 YEAR THAT WERE UTILIZING THE ED 2189 01:18:29,080 --> 01:18:29,640 THAN EXPECTED. 2190 01:18:29,640 --> 01:18:31,040 SO LOTS OF QUESTIONS, WE'RE 2191 01:18:31,040 --> 01:18:32,600 EXCITED TO SEE WHAT THE OTHER 2192 01:18:32,600 --> 01:18:34,320 STATES COME UP WITH, AND THIS 2193 01:18:34,320 --> 01:18:37,480 SUGGESTS THAT MAYBE SOME OF THE 2194 01:18:37,480 --> 01:18:42,880 LOCAL POLICIES OR -- THAT THAT 2195 01:18:42,880 --> 01:18:45,360 MIGHT BE CHANGING HOSPITAL 2196 01:18:45,360 --> 01:18:50,920 UTILIZATION MORE THAN EVEN THE 2197 01:18:50,920 --> 01:18:52,720 SICKLE CELL STATUS OF THE 2198 01:18:52,720 --> 01:18:54,240 INDIVIDUALS IN EACH OF THE 2199 01:18:54,240 --> 01:18:54,560 STATES. 2200 01:18:54,560 --> 01:18:59,800 SO IT QUITE INTERESTING. 2201 01:18:59,800 --> 01:19:01,560 AND THEN I SAID WE WERE GOING TO 2202 01:19:01,560 --> 01:19:02,560 TEST FOR DIFFERENCES. 2203 01:19:02,560 --> 01:19:06,160 THE ONLY ONE THAT LOOKS QUITE 2204 01:19:06,160 --> 01:19:07,040 INTERESTING, IT'S A TREND THAT 2205 01:19:07,040 --> 01:19:12,080 WE SAW BOTH IN GEORGIA AND 2206 01:19:12,080 --> 01:19:13,040 CALIFORNIA, IS THAT THE DECREASE 2207 01:19:13,040 --> 01:19:14,680 IN ED VISITS IS REALLY DRIVEN BY 2208 01:19:14,680 --> 01:19:16,000 THE PEDIATRIC POPULATIONS. 2209 01:19:16,000 --> 01:19:17,520 EVEN IN CALIFORNIA, IT'S EVEN 2210 01:19:17,520 --> 01:19:20,320 THE YOUNGEST, YOU KNOW, IT THE 2211 01:19:20,320 --> 01:19:22,120 ZERO TO 10-YEAR-OLDS. 2212 01:19:22,120 --> 01:19:27,160 THEY'RE HAVING WAY LESS ED 2213 01:19:27,160 --> 01:19:28,440 VISITS THAN THEY HAD BEEN, 2214 01:19:28,440 --> 01:19:31,760 ALMOST A 45% DECREASE IN 2215 01:19:31,760 --> 01:19:33,960 GEORGIA, THAT THEY WERE HAVING 2216 01:19:33,960 --> 01:19:35,240 PRIOR TO THE PANDEMIC. 2217 01:19:35,240 --> 01:19:36,560 THE OTHER THING I WILL JUST SAY, 2218 01:19:36,560 --> 01:19:42,120 WE'VE SCANNED THROUGH ARE THERE 2219 01:19:42,120 --> 01:19:44,080 DIFFERENCES IN THE PRIMARY 2220 01:19:44,080 --> 01:19:44,960 DIAGNOSIS OF THE INDIVIDUALS 2221 01:19:44,960 --> 01:19:49,240 WHEN THEY'RE HAVING THESE ED 2222 01:19:49,240 --> 01:19:50,320 VISITS, AND REALLY THERE AREN'T 2223 01:19:50,320 --> 01:19:52,040 ANY DIFFERENCES, IF WE JUST DID 2224 01:19:52,040 --> 01:19:53,600 LIKE THE TOP FIVE DIAGNOSES FOR 2225 01:19:53,600 --> 01:19:56,240 EACH OR EVEN THE TOP 10, THEY 2226 01:19:56,240 --> 01:19:58,320 PRETTY MUCH LOOK THE SAME PRE 2227 01:19:58,320 --> 01:20:02,040 AND DURING THE PANDEMIC. 2228 01:20:02,040 --> 01:20:03,120 SO MORE TO COME ON THIS. 2229 01:20:03,120 --> 01:20:04,000 IT'S REALLY INTERESTING. 2230 01:20:04,000 --> 01:20:05,200 I'D BE INTERESTED TO SEE IF 2231 01:20:05,200 --> 01:20:06,200 ANYBODY HAS ANY OTHER THOUGHTS 2232 01:20:06,200 --> 01:20:09,240 ABOUT WHY WE MIGHT BE SEEING 2233 01:20:09,240 --> 01:20:11,320 THESE DIFFERENT UTILIZATION 2234 01:20:11,320 --> 01:20:16,040 PATTERNS. 2235 01:20:16,040 --> 01:20:17,480 THEN FINALLY, WE DON'T HAVE 2236 01:20:17,480 --> 01:20:18,080 PRELIMINARY RESULTS FOR THIS, 2237 01:20:18,080 --> 01:20:19,200 BUT WE'RE ALSO LOOKING AT THE 2238 01:20:19,200 --> 01:20:25,760 USE OF TELEHEALTH FOR 2239 01:20:25,760 --> 01:20:28,280 INDIVIDUALS DURING COVID-19 AS 2240 01:20:28,280 --> 01:20:28,480 WELL. 2241 01:20:28,480 --> 01:20:29,720 SOME OF THAT MIGHT BE 2242 01:20:29,720 --> 01:20:31,240 INTERACTING WITH THE ED VISITS, 2243 01:20:31,240 --> 01:20:35,720 WE'RE NOT SURE, BUT WE WANT TO 2244 01:20:35,720 --> 01:20:37,000 DESCRIBE ACCESS TO AND USE OF 2245 01:20:37,000 --> 01:20:37,800 TELEHEALTH AMONG INDIVIDUALS 2246 01:20:37,800 --> 01:20:39,440 WITH SICKLE CELL DURING THE 2247 01:20:39,440 --> 01:20:40,760 COVID-19 PANDEMIC. 2248 01:20:40,760 --> 01:20:42,840 AND WE'RE GOING TO LOOK AT 2249 01:20:42,840 --> 01:20:43,720 CHARACTERISTICS OF THE 2250 01:20:43,720 --> 01:20:45,600 TELEHEALTH USE, THE FREQUENCY OF 2251 01:20:45,600 --> 01:20:48,080 THE USE, THE CHARACTERISTICS OF 2252 01:20:48,080 --> 01:20:51,480 THE PROVIDERS, THE SPECIALTY, 2253 01:20:51,480 --> 01:20:54,440 LOOK AT DEMOGRAPHICS OF THE 2254 01:20:54,440 --> 01:20:57,080 INDIVIDUALS AND AREA LEVEL 2255 01:20:57,080 --> 01:21:01,000 CHARACTERISTICS AS WELL. 2256 01:21:01,000 --> 01:21:03,400 I THINK IT'S PRETTY SELF 2257 01:21:03,400 --> 01:21:04,880 EXPLANATORY, BUT WE JUST SORT OF 2258 01:21:04,880 --> 01:21:07,360 WANT TO KNOW IF ANY OF THAT 2259 01:21:07,360 --> 01:21:09,560 TELEHEALTH USE THAT MAY HAVE 2260 01:21:09,560 --> 01:21:12,800 OCCURRED DURING THE PANDEMIC IS 2261 01:21:12,800 --> 01:21:14,560 REDUCING ANY SORT OF BARRIERS 2262 01:21:14,560 --> 01:21:15,680 THAT INDIVIDUALS MAY HAVE 2263 01:21:15,680 --> 01:21:17,440 EXPERIENCED. 2264 01:21:17,440 --> 01:21:19,640 SO THAT WILL BE VERY EXCITING 2265 01:21:19,640 --> 01:21:20,720 TOO, ONCE WE START LOOKING AT 2266 01:21:20,720 --> 01:21:21,600 THAT. 2267 01:21:21,600 --> 01:21:23,200 I KNOW FROM JUST LOOKING AT 2268 01:21:23,200 --> 01:21:24,080 PRELIMINARY DATA, GEORGIA WAS 2269 01:21:24,080 --> 01:21:25,840 USING A FAIR AMOUNT OF 2270 01:21:25,840 --> 01:21:27,600 TELEHEALTH BEFORE, BUT MOST OF 2271 01:21:27,600 --> 01:21:31,640 THE OTHER STATES, NOT A LOT OF 2272 01:21:31,640 --> 01:21:32,520 TELEHEALTH IN THE SICKLE CELL 2273 01:21:32,520 --> 01:21:33,600 POPULATION, BUT I'M SURE THAT 2274 01:21:33,600 --> 01:21:35,920 THAT HAS INCREASED AND CHANGED 2275 01:21:35,920 --> 01:21:38,760 SINCE THE PANDEMIC. 2276 01:21:38,760 --> 01:21:41,600 SO I THINK THAT WAS MY LAST 2277 01:21:41,600 --> 01:21:42,160 SLIDE. 2278 01:21:42,160 --> 01:21:43,880 AND THAT'S ALSO MY INFORMATION, 2279 01:21:43,880 --> 01:21:46,520 IF ANYBODY WOULD LIKE TO CONTACT 2280 01:21:46,520 --> 01:21:47,400 ME IN THE FUTURE. 2281 01:21:47,400 --> 01:21:49,160 AND I GUESS I'LL TURN IT BACK TO 2282 01:21:49,160 --> 01:21:50,360 YOU, MARY, AND SEE IF THERE'S 2283 01:21:50,360 --> 01:21:52,560 ANY OTHER QUESTIONS. 2284 01:21:52,560 --> 01:21:54,200 >> THANK YOU SO MUCH, ANGIE. 2285 01:21:54,200 --> 01:21:57,240 AND HUGE THANKS TO EVERYBODY WHO 2286 01:21:57,240 --> 01:21:58,120 WAS ON THE PANEL TODAY. 2287 01:21:58,120 --> 01:21:59,440 SO WE HAVE BEEN RECEIVING A LOT 2288 01:21:59,440 --> 01:22:02,840 OF QUESTIONS THROUGH THE Q & A. 2289 01:22:02,840 --> 01:22:04,160 I THINK ALL OF THOSE HAVE BEEN 2290 01:22:04,160 --> 01:22:06,440 ANSWERED AT THIS POINT. 2291 01:22:06,440 --> 01:22:08,320 IF YOU NEED ADDITIONAL 2292 01:22:08,320 --> 01:22:08,960 INFORMATION, YOU'RE MORE THAN 2293 01:22:08,960 --> 01:22:10,880 WELCOME TO REACH OUT TO 2294 01:22:10,880 --> 01:22:14,360 INDIVIDUAL PANELISTS OR YOU CAN 2295 01:22:14,360 --> 01:22:17,400 CONTACT ME AND I WILL CONNECT 2296 01:22:17,400 --> 01:22:18,040 WITH YOU FOLKS. 2297 01:22:18,040 --> 01:22:18,880 THERE ARE SEVERAL QUESTIONS IN 2298 01:22:18,880 --> 01:22:19,920 THE CHAT AS WELL. 2299 01:22:19,920 --> 01:22:21,000 IT LOOKS LIKE THOSE HAVE BEEN 2300 01:22:21,000 --> 01:22:22,240 ANSWERED TOO. 2301 01:22:22,240 --> 01:22:24,520 WE CAN TAKE MORE QUESTIONS. 2302 01:22:24,520 --> 01:22:25,880 IF NOT, I CAN GO THROUGH SOME OF 2303 01:22:25,880 --> 01:22:27,040 THE QUESTIONS THAT WERE ASKED 2304 01:22:27,040 --> 01:22:34,360 AND THE ANSWERS PROVIDED. 2305 01:22:34,360 --> 01:22:36,440 I'M SEEING ONE, WE WISH WE HAD 2306 01:22:36,440 --> 01:22:38,320 MEASURES FOR APPROPRIATE ED CARE 2307 01:22:38,320 --> 01:22:40,840 VERSUS OPTIONAL ED CARE IN 2308 01:22:40,840 --> 01:22:41,360 SICKLE CELL DISEASE. 2309 01:22:41,360 --> 01:22:44,640 I'M NOT SURE -- OPTIONAL, I'M 2310 01:22:44,640 --> 01:22:45,680 NOT SURE IF THAT WAS SOMETHING 2311 01:22:45,680 --> 01:22:47,160 THAT WAS TALKED ABOUT. 2312 01:22:47,160 --> 01:22:49,000 BUT YES, CERTAINLY MEASURES FOR 2313 01:22:49,000 --> 01:22:50,360 APPROPRIATE CARE WOULD BE 2314 01:22:50,360 --> 01:23:00,520 FANTASTIC. 2315 01:23:02,000 --> 01:23:03,360 IT DOESN'T LOOK LIKE WE'VE 2316 01:23:03,360 --> 01:23:05,080 GOT -- I THINK THEY'VE ALL BEEN 2317 01:23:05,080 --> 01:23:06,480 CHECKED IN THE CHAT, SO SOME OF 2318 01:23:06,480 --> 01:23:07,920 THE TYPES OF QUESTIONS THAT HAVE 2319 01:23:07,920 --> 01:23:10,560 COME IN THROUGH THE Q & A, JUST 2320 01:23:10,560 --> 01:23:12,880 TO JUST SHARE WITH OTHERS, 2321 01:23:12,880 --> 01:23:16,680 THERE'S QUESTIONS ABOUT CAN 2322 01:23:16,680 --> 01:23:20,400 KNOWLEDGE BE EXAINGED EXCHANGEH 2323 01:23:20,400 --> 01:23:21,440 OTHER PROGRAMS? 2324 01:23:21,440 --> 01:23:22,800 THIS WAS SPECIFIC TO SICKLE IN 2325 01:23:22,800 --> 01:23:24,600 AFRICA BUT I'M GOING TO EXPAND 2326 01:23:24,600 --> 01:23:25,800 THE QUESTION TO ASKING ABOUT 2327 01:23:25,800 --> 01:23:28,440 OTHERS, SO CERTAINLY THE 2328 01:23:28,440 --> 01:23:30,320 METHODOLOGIES THAT ARE USED HERE 2329 01:23:30,320 --> 01:23:31,840 ARE AND ARE NOT RELEVANT ACROSS 2330 01:23:31,840 --> 01:23:33,640 STATES AND ACROSS COUNTRIES, 2331 01:23:33,640 --> 01:23:34,800 EVERYONE IN THIS PROGRAM LOVES 2332 01:23:34,800 --> 01:23:37,440 TO TALK ABOUT IT, AND WILL 2333 01:23:37,440 --> 01:23:38,760 PROBABLY TALK YOUR EAR OFF IF 2334 01:23:38,760 --> 01:23:41,160 YOU GET IN TOUCH WITH ANY OF US, 2335 01:23:41,160 --> 01:23:43,040 SO WE CAN ABSOLUTELY SHARE 2336 01:23:43,040 --> 01:23:43,320 INFORMATION. 2337 01:23:43,320 --> 01:23:44,520 WE CAN SHARE HOW THE DATA IS 2338 01:23:44,520 --> 01:23:47,520 BEING A SED, WE CAN TALK ABOUT 2339 01:23:47,520 --> 01:23:48,120 CONFIDENTIALITY. 2340 01:23:48,120 --> 01:23:49,160 PLEASE GET IN TOUCH WITH US AND 2341 01:23:49,160 --> 01:23:55,480 WE WILL CERTAINLY DO THAT. 2342 01:23:55,480 --> 01:23:56,400 THERE WAS LOTS OF QUESTIONS 2343 01:23:56,400 --> 01:23:58,360 ABOUT KIND OF INTERPRETING THE 2344 01:23:58,360 --> 01:24:01,200 DATA AND WHAT THE DATA MEANS, 2345 01:24:01,200 --> 01:24:02,080 AND I WILL SAY SOMETHING THAT 2346 01:24:02,080 --> 01:24:05,600 LOOKS TO BE COMMON ACROSS MANY 2347 01:24:05,600 --> 01:24:07,640 OF THEM IS, AGAIN, ONE OF THE 2348 01:24:07,640 --> 01:24:09,080 UNIQUE ASPECTS OF THIS PROGRAM 2349 01:24:09,080 --> 01:24:13,160 IS THAT IT DOES INCLUDE PEOPLE 2350 01:24:13,160 --> 01:24:16,000 OF ALL AGE, IT INCLUDES 2351 01:24:16,000 --> 01:24:16,720 HEALTHCARE UTILIZATION 2352 01:24:16,720 --> 01:24:17,880 REGARDLESS OF WHO PAYS FOR IT, 2353 01:24:17,880 --> 01:24:20,800 SO WHETHER IT'S MEDICARE, 2354 01:24:20,800 --> 01:24:21,880 MEDICAID, PRIVATE INSURANCE, 2355 01:24:21,880 --> 01:24:23,240 SELF PAY, OTHER FORMS OF 2356 01:24:23,240 --> 01:24:25,160 INSURANCE, THAT IS ALL CAPTURED 2357 01:24:25,160 --> 01:24:33,520 BY THIS PROGRAM. 2358 01:24:33,520 --> 01:24:33,800 REALLY -- 2359 01:24:33,800 --> 01:24:35,080 >> THERE ARE A FEW COMMENTS ON 2360 01:24:35,080 --> 01:24:37,160 THE CHAT, I THINK. 2361 01:24:37,160 --> 01:24:39,840 MARY, THERE ARE A FEW COMMENTS 2362 01:24:39,840 --> 01:24:40,200 IN THE CHAT. 2363 01:24:40,200 --> 01:24:41,440 >> ARE THEY NEW? 2364 01:24:41,440 --> 01:24:43,280 LET'S SEE. 2365 01:24:43,280 --> 01:24:44,480 REGARDING THE NEW -- THAT'S FROM 2366 01:24:44,480 --> 01:24:45,880 DOM FOR OTHERS, LETTING YOU KNOW 2367 01:24:45,880 --> 01:24:50,640 THAT THE NEW CENTER IN 2368 01:24:50,640 --> 01:24:51,600 DETROIT -- NOT SURE IT'S READY 2369 01:24:51,600 --> 01:24:53,240 TO BE ANNOUNCED JUST YET BUT 2370 01:24:53,240 --> 01:24:54,680 WILL SHARE THIS INFORMATION ONCE 2371 01:24:54,680 --> 01:24:55,760 THERE IS INFORMATION AVAILABLE, 2372 01:24:55,760 --> 01:24:57,760 AND I WILL BE HAPPY TO GET THAT 2373 01:24:57,760 --> 01:25:02,680 OUT TO FOLKS. 2374 01:25:02,680 --> 01:25:06,520 AND THEN A COMMENT BACK TO 2375 01:25:06,520 --> 01:25:11,880 DR. SU ASKING ABOUT ED CARE THAT 2376 01:25:11,880 --> 01:25:13,640 GETS PRETTY CLOSE AT DETERMINING 2377 01:25:13,640 --> 01:25:17,920 DIFFERENT MEASURES OF ED CARE. 2378 01:25:17,920 --> 01:25:21,080 OH, PAULA TANABE, DO YOU HAVE 2379 01:25:21,080 --> 01:25:22,320 YOUR HAND UP? 2380 01:25:22,320 --> 01:25:23,920 FEEL FREE TO COME OFF MUTE. 2381 01:25:23,920 --> 01:25:25,080 I THINK YOU'RE A PANELIST SO YOU 2382 01:25:25,080 --> 01:25:27,680 CAN DO THAT. 2383 01:25:27,680 --> 01:25:29,200 >> DOMINIC ANSWERED IT IN THE 2384 01:25:29,200 --> 01:25:29,400 CHAT. 2385 01:25:29,400 --> 01:25:30,760 >> OH, WONDERFUL. 2386 01:25:30,760 --> 01:25:31,400 WONDERFUL. 2387 01:25:31,400 --> 01:25:31,840 OKAY. 2388 01:25:31,840 --> 01:25:36,200 SO I WILL CLOSE OUT OUR TIME 2389 01:25:36,200 --> 01:25:39,400 HERE TODAY. 2390 01:25:39,400 --> 01:25:40,480 BUT PLEASE, IF YOU NEED 2391 01:25:40,480 --> 01:25:41,440 ADDITIONAL ANSWERS TO YOUR 2392 01:25:41,440 --> 01:25:42,480 QUESTIONS OR IF MORE QUESTIONS 2393 01:25:42,480 --> 01:25:44,000 COME UP, REACH OUT TO US. 2394 01:25:44,000 --> 01:25:45,080 IF YOU HAVE QUESTIONS YOU WOULD 2395 01:25:45,080 --> 01:25:46,720 LIKE TO ASK OF THE DATA, YOU CAN 2396 01:25:46,720 --> 01:25:48,360 REACH OUT TO ONE OF THE STATES 2397 01:25:48,360 --> 01:25:49,800 DIRECTLY AND WORK WITH THEM. 2398 01:25:49,800 --> 01:25:52,280 YOU CAN GET IN TOUCH WITH ME. 2399 01:25:52,280 --> 01:25:54,840 YOU KNOW, WE'RE HOPEFUL THAT 2400 01:25:54,840 --> 01:25:57,560 THIS PROJECT CONTINUES AND 2401 01:25:57,560 --> 01:25:58,680 CONTINUES TO INCREASE THE 2402 01:25:58,680 --> 01:25:59,720 RESOURCES AND FUNDING AVAILABLE 2403 01:25:59,720 --> 01:26:01,840 SO THAT WE CAN EXPAND TO ANSWER 2404 01:26:01,840 --> 01:26:03,240 MANY MORE QUESTIONS FOR A LONG 2405 01:26:03,240 --> 01:26:05,480 TIME TO COME AND USE THIS 2406 01:26:05,480 --> 01:26:06,960 INFORMATION TO CONTINUE 2407 01:26:06,960 --> 01:26:08,200 IMPROVING CARE AND ACCESS TO 2408 01:26:08,200 --> 01:26:09,160 CARE. 2409 01:26:09,160 --> 01:26:10,720 THANKS, EVERYONE, VERY, VERY 2410 01:26:10,720 --> 01:26:11,520 MUCH. 2411 01:26:11,520 --> 01:26:14,320 >> THANK YOU FOR A GREAT SESSION 2412 01:26:14,320 --> 01:26:15,000 ON SURVEILLANCE. 2413 01:26:15,000 --> 01:26:19,600 SO NOW WE MOVE TO OUR NEXT PART, 2414 01:26:19,600 --> 01:26:24,160 WHICH IS DR. ROBERT GIBSON IS 2415 01:26:24,160 --> 01:26:25,440 GOING TO TALK ABOUT FINDINGS 2416 01:26:25,440 --> 01:26:27,600 FROM THE SICKLE CELL DISEASE 2417 01:26:27,600 --> 01:26:30,880 IMPLEMENTATION CONSORTIUM. 2418 01:26:30,880 --> 01:26:31,160 DR. GIBSON. 2419 01:26:31,160 --> 01:26:31,520 >> THANK YOU. 2420 01:26:31,520 --> 01:26:32,720 IF YOU CAN BRING UP MY SLIDES 2421 01:26:32,720 --> 01:26:34,640 AND WE CAN GET STARTED. 2422 01:26:34,640 --> 01:26:36,480 I WANT TO WELCOME EVERYBODY AND 2423 01:26:36,480 --> 01:26:37,560 THANK THE SPEAKERS THAT YOU'RE 2424 01:26:37,560 --> 01:26:39,760 GOING TO HEAR. 2425 01:26:39,760 --> 01:26:41,720 BECAUSE WE'RE WORKING UNDER THE 2426 01:26:41,720 --> 01:26:42,920 CLOCK, I'M GOING TO ASK ALL OF 2427 01:26:42,920 --> 01:26:44,600 OUR PRESENTERS TO STAY ON 2428 01:26:44,600 --> 01:26:46,640 SCHEDULE TO THE BEST OF THEIR 2429 01:26:46,640 --> 01:26:47,000 ABILITY. 2430 01:26:47,000 --> 01:26:50,600 AND I WILL ONLY INTRODUCE EACH 2431 01:26:50,600 --> 01:26:52,640 SPEAKER -- EACH PRIMARY SPEAKER 2432 01:26:52,640 --> 01:26:53,880 OF EACH SECTION. 2433 01:26:53,880 --> 01:26:56,200 ALSO PLEASE USE THE CHAT -- I 2434 01:26:56,200 --> 01:26:58,480 GUESS THE Q & A FUNCTION. 2435 01:26:58,480 --> 01:27:00,280 WE HAVE SOMEONE MONITORING THAT 2436 01:27:00,280 --> 01:27:02,200 AND THEY'LL BE ATTEMPTING TO 2437 01:27:02,200 --> 01:27:04,120 EITHER ANSWER THOSE QUESTIONS 2438 01:27:04,120 --> 01:27:07,720 LIVE OR TO BE ABLE TO DEAL WITH 2439 01:27:07,720 --> 01:27:09,280 THEM AT THE END OF EACH SESSION, 2440 01:27:09,280 --> 01:27:10,680 WE HAVE TIME SET ASIDE FOR 2441 01:27:10,680 --> 01:27:14,160 QUESTIONS. 2442 01:27:14,160 --> 01:27:15,800 SO I'M GOING TO ASK EVERYBODY TO 2443 01:27:15,800 --> 01:27:17,120 BE SUCCINCT SO WE STAY ON 2444 01:27:17,120 --> 01:27:18,280 SCHEDULE AND TO DO THAT, I'M 2445 01:27:18,280 --> 01:27:19,560 GOING TO GO AHEAD AND START. 2446 01:27:19,560 --> 01:27:21,520 YOU CAN SEE WHO I AM, AND I'M 2447 01:27:21,520 --> 01:27:23,720 SPEAKING TODAY ON BEHALF OF THE 2448 01:27:23,720 --> 01:27:26,320 IMPLEMENTATION CO CONSORTIUM. 2449 01:27:26,320 --> 01:27:27,760 THIS IS SORT OF A WRAP-UP SLIDE 2450 01:27:27,760 --> 01:27:29,440 SHOW OF WHAT WE'VE DONE OVER THE 2451 01:27:29,440 --> 01:27:32,160 LAST SIX YEARS, AND TO WHET YOUR 2452 01:27:32,160 --> 01:27:33,320 APPETITES FOR WHAT WE'RE GOING 2453 01:27:33,320 --> 01:27:38,920 TO DO IN THE FUTURE. 2454 01:27:38,920 --> 01:27:40,520 I'M NOT SURE THAT THAT'S THE 2455 01:27:40,520 --> 01:27:42,000 NEXT SLIDE, BUT THAT'S OKAY. 2456 01:27:42,000 --> 01:27:46,360 THIS SHOWS THE PARTICIPATING 2457 01:27:46,360 --> 01:27:47,040 ORGANIZATIONS. 2458 01:27:47,040 --> 01:27:48,240 THERE WERE EIGHT DIFFERENT 2459 01:27:48,240 --> 01:27:56,160 CENTERS. 2460 01:27:56,160 --> 01:28:00,280 SO THE CONSORTIUM HAD A COUPLE 2461 01:28:00,280 --> 01:28:01,920 OF SPECIFIC GOALS THAT IT WAS TO 2462 01:28:01,920 --> 01:28:03,800 CARRY OUT, AND ONE WAS A NEEDS 2463 01:28:03,800 --> 01:28:04,880 ASSESSMENT AND THIS IS JUST SORT 2464 01:28:04,880 --> 01:28:06,760 OF A VERY QUICK OVERVIEW OF THAT 2465 01:28:06,760 --> 01:28:08,440 NEEDS ASSESSMENT THAT WAS 2466 01:28:08,440 --> 01:28:09,400 CONDUCTED SIX YEARS AGO AT THE 2467 01:28:09,400 --> 01:28:12,320 START OF THE PROJECT. 2468 01:28:12,320 --> 01:28:13,440 JUST TO GIVE YOU SOME IDEA OF 2469 01:28:13,440 --> 01:28:15,000 WHAT WE WERE LOOKING AT AND HOW 2470 01:28:15,000 --> 01:28:18,480 WE COLLECTED DATA. 2471 01:28:18,480 --> 01:28:21,240 WE ALSO WERE CHARGED WITH -- GO 2472 01:28:21,240 --> 01:28:24,960 BACK ONE, PLEASE. 2473 01:28:24,960 --> 01:28:27,000 WE WERE ALSO CHARGED WITH, AS 2474 01:28:27,000 --> 01:28:29,880 WELL AS DOING A BROAD BASED 2475 01:28:29,880 --> 01:28:31,760 ASSESSMENT, TO THE STARTING OF A 2476 01:28:31,760 --> 01:28:34,480 STREJ INDUSTRY. 2477 01:28:34,480 --> 01:28:34,760 REGISTRY. 2478 01:28:34,760 --> 01:28:35,800 WE'VE HEARD A LOT OF INFORMATION 2479 01:28:35,800 --> 01:28:36,880 THIS MORNING ABOUT REGISTRIES 2480 01:28:36,880 --> 01:28:38,440 AND DATA COLLECTION, SO THIS WAS 2481 01:28:38,440 --> 01:28:42,840 A PROSPECTIVE REGISTRY WITH OVER 2482 01:28:42,840 --> 01:28:44,680 2400 INDIVIDUALS ENROLLED. 2483 01:28:44,680 --> 01:28:47,320 THIS IS THE -- THESE ARE THE 2484 01:28:47,320 --> 01:28:48,520 BASIC INFORMATION ABOUT THAT 2485 01:28:48,520 --> 01:28:49,960 REGISTRY. 2486 01:28:49,960 --> 01:28:51,160 AND THE IMPORTANT THING IS GOING 2487 01:28:51,160 --> 01:28:52,480 TO BE FOUND ON THE NEXT SLIDE 2488 01:28:52,480 --> 01:29:02,840 ABOUT OUR REGISTRY. 2489 01:29:03,240 --> 01:29:05,280 SO THE REGISTRY IS THE NOT 2490 01:29:05,280 --> 01:29:07,840 STOPPING WITH THE PROJECT. 2491 01:29:07,840 --> 01:29:09,000 CURE SC FUNDING IS NOW GOING TO 2492 01:29:09,000 --> 01:29:10,440 BE USED TO CONTINUE THIS 2493 01:29:10,440 --> 01:29:11,640 REGISTRY, AND IT WILL CONTINUE 2494 01:29:11,640 --> 01:29:13,160 TO BE BUILT ON THE CURRENT 2495 01:29:13,160 --> 01:29:14,040 PLATFORM. 2496 01:29:14,040 --> 01:29:16,240 WE'RE GOING TO CONTINUE TO 2497 01:29:16,240 --> 01:29:17,680 COLLECT LONGITUDINAL DATA THAT 2498 01:29:17,680 --> 01:29:18,920 INFORMS THE NATURAL HISTORY OF 2499 01:29:18,920 --> 01:29:20,160 SICKLE CELL DISEASE. 2500 01:29:20,160 --> 01:29:22,600 IT'S GOING TO BE A WELL -- IT'S 2501 01:29:22,600 --> 01:29:25,120 A COHORT THAT'S WELL 2502 01:29:25,120 --> 01:29:25,880 CHARACTERIZED. 2503 01:29:25,880 --> 01:29:27,440 WE'RE LOOKING TO CREATE 2504 01:29:27,440 --> 01:29:29,600 AUTOMATED EHR DATA EXTRACTION AS 2505 01:29:29,600 --> 01:29:31,480 THIS MOVES FORWARD. 2506 01:29:31,480 --> 01:29:33,120 AND THIS WILL BE AVAILABLE -- 2507 01:29:33,120 --> 01:29:35,400 THIS DATA WILL BE AVAILABLE AT 2508 01:29:35,400 --> 01:29:40,040 THE NHLBI BIOLINCC AND BIODATA 2509 01:29:40,040 --> 01:29:41,160 CATALYST REPOSITORIES. 2510 01:29:41,160 --> 01:29:42,360 I KNOW PEOPLE ARE WORKING ACROSS 2511 01:29:42,360 --> 01:29:43,560 ALL OF THE DIFFERENT REGISTRIES 2512 01:29:43,560 --> 01:29:45,040 TO MAKE THEM INTEROPERABLE AND I 2513 01:29:45,040 --> 01:29:47,960 KNOW THAT THAT'S SOMETHING 2514 01:29:47,960 --> 01:29:49,320 THAT'S CERTAINLY SOUGHT AFTER. 2515 01:29:49,320 --> 01:29:57,320 SO THIS IS A GREAT BENEFIT OF 2516 01:29:57,320 --> 01:29:59,480 THE SCD PROJECT. 2517 01:29:59,480 --> 01:30:03,200 ANOTHER USE OF THE REGISTRY DATA 2518 01:30:03,200 --> 01:30:05,360 IN AN ONGOING REGISTRY STUDY IS 2519 01:30:05,360 --> 01:30:07,800 IN THE FINAL STAGES OF BEING 2520 01:30:07,800 --> 01:30:08,240 AWARDED. 2521 01:30:08,240 --> 01:30:13,960 THIS HAS BEEN REVIEWED BY NHLBI 2522 01:30:13,960 --> 01:30:16,160 AND WE ARE AWAITING FINAL 2523 01:30:16,160 --> 01:30:16,440 APPROVAL. 2524 01:30:16,440 --> 01:30:22,440 THE PI ON THIS IS JEFF GLOSSBERG 2525 01:30:22,440 --> 01:30:24,720 AND THIS IS LOOKING AT THE 2526 01:30:24,720 --> 01:30:27,640 IMPACT OF SOME OF THE NEW 2527 01:30:27,640 --> 01:30:28,560 MEDICATIONS ON PATIENT OUTCOME 2528 01:30:28,560 --> 01:30:30,880 SO THIS IS ANOTHER EXCITING 2529 01:30:30,880 --> 01:30:32,840 OUTCOME OF THE STUDY, OF THE 2530 01:30:32,840 --> 01:30:39,760 REGISTRY PROJECT. 2531 01:30:39,760 --> 01:30:42,200 THE SICKLE CELL CONSORTIUM, IN 2532 01:30:42,200 --> 01:30:45,040 ADDITION TO THE REGISTRY, ALSO 2533 01:30:45,040 --> 01:30:47,240 HAD THREE DIFFERENT PROJECTS. 2534 01:30:47,240 --> 01:30:48,240 THE ALIGN PROJECT, WHICH YOU 2535 01:30:48,240 --> 01:30:56,400 WILL BE HEARING ABOUT. 2536 01:30:56,400 --> 01:30:58,120 DR. TANABE WILL BE REPORTING OUT 2537 01:30:58,120 --> 01:31:04,440 DATA FROM TH THE ALIGN PROJECT,O 2538 01:31:04,440 --> 01:31:06,400 IMPROVE MANAGEMENT OF 2539 01:31:06,400 --> 01:31:08,480 VASO-OCCLUSIVE EPISODES IN ADULT 2540 01:31:08,480 --> 01:31:17,240 EMERGENCY DEPARTMENTS. 2541 01:31:17,240 --> 01:31:18,800 SO THE STUDY IS COMPLETING ITS 2542 01:31:18,800 --> 01:31:21,320 DATA COLLECTION AND IS BEGINNING 2543 01:31:21,320 --> 01:31:21,840 DATA ANALYSIS. 2544 01:31:21,840 --> 01:31:24,920 A NUMBER OF PUBLICATIONS ARE 2545 01:31:24,920 --> 01:31:26,480 PLANNED IN THE OUTCOMES. 2546 01:31:26,480 --> 01:31:27,480 INVESTIGATORS ARE PLANNING 2547 01:31:27,480 --> 01:31:28,360 FUTURE GRANT APPLICATIONS TO 2548 01:31:28,360 --> 01:31:30,120 CONTINUE THE WORK, AND 2549 01:31:30,120 --> 01:31:31,320 DR. TANABE LATER IN THIS SESSION 2550 01:31:31,320 --> 01:31:32,680 WILL ACTUALLY BE REPORTING 2551 01:31:32,680 --> 01:31:37,560 PRELIMINARY RESULTS. 2552 01:31:37,560 --> 01:31:40,600 ANOTHER PROJECT WAS THE MESH 2553 01:31:40,600 --> 01:31:44,360 PROJECT, AND THIS WAS LED BY DRS 2554 01:31:44,360 --> 01:31:45,760 WILL ALSO BE PROVIDING 2555 01:31:45,760 --> 01:31:47,840 PRELIMINARY DATA AT THE -- 2556 01:31:47,840 --> 01:31:55,760 DURING THE SESSION AS WELL. 2557 01:31:55,760 --> 01:31:57,080 SO THE GOALS OF THAT PROJECT 2558 01:31:57,080 --> 01:31:59,120 WERE TO IMPROVE PATIENT 2559 01:31:59,120 --> 01:32:04,160 ADHERENCE TO HYDROXYUREA, 2560 01:32:04,160 --> 01:32:06,480 IMPROVE PROVIDER HYDROXYUREA 2561 01:32:06,480 --> 01:32:07,920 PRESCRIBING BEHAVIORS AND 2562 01:32:07,920 --> 01:32:12,080 EVALUATE BARRIERS AND 2563 01:32:12,080 --> 01:32:13,080 FACILITATORS, AND ALL OF THIS 2564 01:32:13,080 --> 01:32:16,800 WAS DONE USING AN APP AND DATA 2565 01:32:16,800 --> 01:32:17,240 RECORDER. 2566 01:32:17,240 --> 01:32:19,200 SO THE MESH TEAM IS, AGAIN, ALSO 2567 01:32:19,200 --> 01:32:22,040 COMPLETING THEIR DATA ANALYSIS, 2568 01:32:22,040 --> 01:32:25,920 AND THEY'RE ALSO DEVELOPING 2569 01:32:25,920 --> 01:32:26,240 PUBLICATIONS. 2570 01:32:26,240 --> 01:32:28,040 THEY HAVE RECEIVED AN ASH BRIDGE 2571 01:32:28,040 --> 01:32:29,120 FUNDING GRANT TO CONTINUE THEIR 2572 01:32:29,120 --> 01:32:33,480 WORK WHILE THEY RESUBMIT AN 2573 01:32:33,480 --> 01:32:35,160 APPLICATION TO NHLBI TO 2574 01:32:35,160 --> 01:32:36,160 SPECIFICALLY CONTINUE AND EXPAND 2575 01:32:36,160 --> 01:32:37,800 THIS WORK, AND DR. HAWKINS WILL 2576 01:32:37,800 --> 01:32:39,480 ALSO BE TALKING ABOUT THEIR 2577 01:32:39,480 --> 01:32:45,600 PRELIMINARY DATA. 2578 01:32:45,600 --> 01:32:46,560 THE THIRD PROJECT WE WORKED ON 2579 01:32:46,560 --> 01:32:49,640 AS PART OF THE CONSORTIUM WAS 2580 01:32:49,640 --> 01:32:50,440 GETTING UNAFFILIATED PATIENTS TO 2581 01:32:50,440 --> 01:32:51,560 CARE, AND I'M GOING TO SPEAK A 2582 01:32:51,560 --> 01:32:59,280 LITTLE BIT ABOUT THAT PROJECT. 2583 01:32:59,280 --> 01:33:02,280 SO THE OUTCOMES FROM THE 2584 01:33:02,280 --> 01:33:04,680 UNAFFILIATED PROJECT, WE CARRIED 2585 01:33:04,680 --> 01:33:08,520 OUT A DELPHI PROJECT WHERE WE 2586 01:33:08,520 --> 01:33:10,400 IDENTIFIED THROUGH THE DELPHI 2587 01:33:10,400 --> 01:33:11,920 PROCESS CREATED A DEFINITION FOR 2588 01:33:11,920 --> 01:33:14,560 WHAT IS TRULY AN UNAFFILIATED 2589 01:33:14,560 --> 01:33:17,880 STATUS, AND THEN ALSO TO, 2590 01:33:17,880 --> 01:33:19,320 THROUGH THE DELPHI PROCESS, TO 2591 01:33:19,320 --> 01:33:22,160 DEFINE A SPECIALIST WHO PROVIDES 2592 01:33:22,160 --> 01:33:23,800 CARE FOR INDIVIDUALS WITH SICKLE 2593 01:33:23,800 --> 01:33:26,120 CELL DISEASE. 2594 01:33:26,120 --> 01:33:28,480 OUT OF THE UNAFFILIATED PROJECT, 2595 01:33:28,480 --> 01:33:30,120 A MULTISITE R01 HAS BEEN 2596 01:33:30,120 --> 01:33:35,440 DEVELOPED AND FUNDED, DR. CANTOR 2597 01:33:35,440 --> 01:33:37,160 IS THE CONTACT PI FOR THAT. 2598 01:33:37,160 --> 01:33:38,840 THIS PROJECT WILL BE LOOKING AT 2599 01:33:38,840 --> 01:33:39,960 IDENTIFYING WAYS TO ENGAGE 2600 01:33:39,960 --> 01:33:42,000 INDIVIDUALS WITH SICKLE CELL 2601 01:33:42,000 --> 01:33:43,080 DISEASE IN CARE. 2602 01:33:43,080 --> 01:33:44,960 WE ARE ALSO COMPLETING THE 2603 01:33:44,960 --> 01:33:46,320 ANALYSIS OF THE QUALITATIVE 2604 01:33:46,320 --> 01:33:48,600 STUDY THAT WE CONDUCTED LOOKING 2605 01:33:48,600 --> 01:33:50,000 AT PATIENT ENGAGEMENT AND I'LL 2606 01:33:50,000 --> 01:33:53,120 BE PRESENTING THAT IN NOT THE 2607 01:33:53,120 --> 01:33:57,920 NEXT SESSION BUT THE ONE AFTER. 2608 01:33:57,920 --> 01:33:59,640 SO THESE ARE THE FINDINGS FROM 2609 01:33:59,640 --> 01:34:01,560 THE DELPHI. 2610 01:34:01,560 --> 01:34:03,280 YOU CAN SEE ON THE LEFT A 2611 01:34:03,280 --> 01:34:04,280 DEFINITION OF AN INDIVIDUAL WITH 2612 01:34:04,280 --> 01:34:05,800 SICKLE CELL DISEASE WHO IS 2613 01:34:05,800 --> 01:34:06,600 CONSIDERED UNAFFILIATED. 2614 01:34:06,600 --> 01:34:08,240 AND THEN ON THE RIGHT IN BLUE, 2615 01:34:08,240 --> 01:34:10,080 THE DEFINITION OF A SICKLE CELL 2616 01:34:10,080 --> 01:34:12,520 SPECIALIST. 2617 01:34:12,520 --> 01:34:14,360 I'LL GIVE YOU A MOMENT TO LOOK 2618 01:34:14,360 --> 01:34:22,280 AT THAT. 2619 01:34:22,280 --> 01:34:24,240 SO THIS IS A LITTLE BIT OF AN 2620 01:34:24,240 --> 01:34:25,680 OVERVIEW OF THE PROJECT THAT I 2621 01:34:25,680 --> 01:34:28,760 DESCRIBED THAT DR. CANTER WILL 2622 01:34:28,760 --> 01:34:29,400 BE RUNNING. 2623 01:34:29,400 --> 01:34:30,960 IT'S CALLED RECIPE FOR SHORT. 2624 01:34:30,960 --> 01:34:32,720 AND THIS WILL CONTINUE THE 2625 01:34:32,720 --> 01:34:34,680 EFFORTS AT ADAPTING EXISTING 2626 01:34:34,680 --> 01:34:37,440 IMPLEMENTATION STRATEGIES USED 2627 01:34:37,440 --> 01:34:38,600 IN OTHER CHRONIC DISEASES FOR 2628 01:34:38,600 --> 01:34:40,480 SICKLE CELL DISEASE. 2629 01:34:40,480 --> 01:34:44,480 SO IT'S LARGELY AN INL PLEM 2630 01:34:44,480 --> 01:34:47,760 IMPLEMENTATION SCIENCE PROJECT. 2631 01:34:47,760 --> 01:34:49,320 THESE ARE THE SITES FOR THE 2632 01:34:49,320 --> 01:34:50,720 RECIPE PROJECT, AND YOU SEE 2633 01:34:50,720 --> 01:34:53,320 THERE'S A NICE DISTRIBUTION AND 2634 01:34:53,320 --> 01:34:54,680 THIS OVERLAPS VERY NICELY WITH 2635 01:34:54,680 --> 01:34:57,840 THE SLIDE THAT WAS PRESENTED IN 2636 01:34:57,840 --> 01:35:00,920 THE PREVIOUS PRESENTATION FROM 2637 01:35:00,920 --> 01:35:03,760 THE CDC PROJECT OVERLAPPING 2638 01:35:03,760 --> 01:35:05,040 WHERE THERE ARE LARGE 2639 01:35:05,040 --> 01:35:05,720 INDIVIDUALS WITH SICKLE CELL 2640 01:35:05,720 --> 01:35:09,320 DISEASE. 2641 01:35:09,320 --> 01:35:12,120 SO OVERALL, IN CONCLUSION, AND I 2642 01:35:12,120 --> 01:35:13,280 AM JUST ABOUT OVER TIME. 2643 01:35:13,280 --> 01:35:16,080 SO THESE ARE THE OUTCOMES OF THE 2644 01:35:16,080 --> 01:35:24,800 SICKLE CELL CONSORTIUM. 2645 01:35:24,800 --> 01:35:26,320 WE'VE HAD A GREAT OUTCOME. 2646 01:35:26,320 --> 01:35:27,800 I'VE JUST DESCRIBED HOW THE 2647 01:35:27,800 --> 01:35:28,760 PROJECTS WILL GO ON IN THE 2648 01:35:28,760 --> 01:35:29,120 FUTURE. 2649 01:35:29,120 --> 01:35:31,080 AND THEN THE LAST THING WE WANT 2650 01:35:31,080 --> 01:35:33,240 TO CALL ATTENTION TO IS WE'VE 2651 01:35:33,240 --> 01:35:35,720 HAD A NUMBER OF WONDERFUL 2652 01:35:35,720 --> 01:35:37,680 DIVERSITY SUPPLEMENT TRAINEES AS 2653 01:35:37,680 --> 01:35:38,560 WELL AS ONE PRIDE TRAINEE. 2654 01:35:38,560 --> 01:35:40,040 JUST WANT TO SHOUT OUT THESE 2655 01:35:40,040 --> 01:35:40,880 INDIVIDUALS WHO HAVE WORKED ON 2656 01:35:40,880 --> 01:35:42,000 OUR PROJECT OVER THE LAST SIX 2657 01:35:42,000 --> 01:35:43,280 YEARS AND THE BENEFITS TO THEIR 2658 01:35:43,280 --> 01:35:44,520 CAREER AND TO SCIENCE IN 2659 01:35:44,520 --> 01:35:48,920 GENERAL. 2660 01:35:48,920 --> 01:35:50,920 I THINK I'VE RUN OUT OF TIME, SO 2661 01:35:50,920 --> 01:35:51,920 WE'LL TRY AND ANSWER QUESTIONS 2662 01:35:51,920 --> 01:35:54,400 IN THE CHAT. 2663 01:35:54,400 --> 01:35:55,720 OR WE'LL PICK THEM UP LATER. 2664 01:35:55,720 --> 01:36:03,160 NOW I WANT TO INTRODUCE 2665 01:36:03,160 --> 01:36:06,920 DR. LEWIS HSU WHO IS LEADING US 2666 01:36:06,920 --> 01:36:08,760 WITH THE VALUE OF COMMUNITY 2667 01:36:08,760 --> 01:36:10,320 STAKEHOLDERS. 2668 01:36:10,320 --> 01:36:12,600 >> THANK YOU, DR. GIBSON. 2669 01:36:12,600 --> 01:36:23,080 CAN I GET MY SLIDES BACK UP? 2670 01:36:23,560 --> 01:36:25,880 BRIDGET REYNOLDS IS MY PARTNER 2671 01:36:25,880 --> 01:36:26,960 AND SHE'LL PRESENT THE LATTER 2672 01:36:26,960 --> 01:36:27,440 HALF. 2673 01:36:27,440 --> 01:36:28,480 WHILE WE'RE WAITING FOR THE 2674 01:36:28,480 --> 01:36:30,400 SLIDES TO COME UP. 2675 01:36:30,400 --> 01:36:32,360 I'M PLEASED AND HONORED TO 2676 01:36:32,360 --> 01:36:33,040 CO-PRESENT THIS SESSION THAT'S 2677 01:36:33,040 --> 01:36:36,440 CALLED THE VALUE OF COMMUNITY 2678 01:36:36,440 --> 01:36:38,840 STAKEHOLDER ADVISORS IN 2679 01:36:38,840 --> 01:36:40,520 TRANSFORMING SICKLE CELL CARE. 2680 01:36:40,520 --> 01:36:42,360 A COLLABORATIVE JOURNEY. 2681 01:36:42,360 --> 01:36:43,800 AND OUR GOAL IN THIS IS TO 2682 01:36:43,800 --> 01:36:45,640 HIGHLIGHT THE VALUE OF 2683 01:36:45,640 --> 01:36:47,800 STAKEHOLDER ADVISORS FOR THIS 2684 01:36:47,800 --> 01:36:49,320 SICKLE CELL DISEASE 2685 01:36:49,320 --> 01:36:51,920 IMPLEMENTATION CONSORTIUM 2686 01:36:51,920 --> 01:36:53,440 PROJECT, AND WE'RE GOING TO GIVE 2687 01:36:53,440 --> 01:36:54,800 EXAMPLES FROM OUR CHICAGO GROUP. 2688 01:36:54,800 --> 01:36:57,200 WE WANT TO EMPHASIZE THAT THIS 2689 01:36:57,200 --> 01:36:58,080 WAS A PANEL COLLABORATIVE 2690 01:36:58,080 --> 01:36:59,640 ACTIVITY AND WE'RE SPEAKING ON 2691 01:36:59,640 --> 01:37:02,040 BEHALF OF THE WHOLE CHICAGO SITE 2692 01:37:02,040 --> 01:37:05,800 WITH SPECIFICALLY ALSO ADVISOR 2693 01:37:05,800 --> 01:37:07,120 STAKEHOLDERS LISTED HERE ON THIS 2694 01:37:07,120 --> 01:37:12,000 SLIDE, AND NEXT SLIDE, PLEASE. 2695 01:37:12,000 --> 01:37:14,360 SO IF THIS WAS A LIVE 2696 01:37:14,360 --> 01:37:16,120 PRESENTATION, WE WOULD ALL BE 2697 01:37:16,120 --> 01:37:17,080 SITTING ON THE STAGE AS 2698 01:37:17,080 --> 01:37:18,280 PANELISTS WITH THE POT PLANT 2699 01:37:18,280 --> 01:37:22,160 POTTED PLANTNEXT TO US. 2700 01:37:22,160 --> 01:37:26,080 BUT THE VIRTUAL FOR MA'AM MADE 2701 01:37:26,080 --> 01:37:34,960 US TRUNCATE THE TIMING. 2702 01:37:34,960 --> 01:37:37,400 THEY WERE ALL CO-PREPARERS OF 2703 01:37:37,400 --> 01:37:38,160 THIS PRESENTATION. 2704 01:37:38,160 --> 01:37:40,040 THERE WERE MANY OTHER 2705 01:37:40,040 --> 01:37:41,080 STAKEHOLDERS WHO MADE IMPORTANT 2706 01:37:41,080 --> 01:37:42,120 CONTRIBUTIONS TO THE PROJECT BUT 2707 01:37:42,120 --> 01:37:43,600 THESE WERE THE FOUR WHO PREPARED 2708 01:37:43,600 --> 01:37:48,160 TODAY'S TALK. 2709 01:37:48,160 --> 01:37:49,720 WHAT I'D LIKE TO DO IS GIVE, IN 2710 01:37:49,720 --> 01:37:52,880 MY PART, THE HIGHLIGHTS ON THE 2711 01:37:52,880 --> 01:37:55,000 VALUE OF THE COMMUNITY ADVISORY 2712 01:37:55,000 --> 01:37:56,240 BOARD TO ACADEMIC RESEARCHERS 2713 01:37:56,240 --> 01:37:57,280 LIKE ME. 2714 01:37:57,280 --> 01:38:01,240 AND THAT THE -- AND THEN BRIDGET 2715 01:38:01,240 --> 01:38:02,800 REYNOLDS WILL GIVE THE 2716 01:38:02,800 --> 01:38:05,000 PERSPECTIVE OF THE STAKEHOLDER 2717 01:38:05,000 --> 01:38:06,160 ADVISORS. 2718 01:38:06,160 --> 01:38:07,800 SO FIRST IN THE PLANNING AND 2719 01:38:07,800 --> 01:38:09,360 DESIGN PHASE, EVEN IN THE GRANT 2720 01:38:09,360 --> 01:38:11,440 PREPARATION PART, PRECOVID, WE 2721 01:38:11,440 --> 01:38:13,320 LITERALLY HAD A LARGE GROUP OF 2722 01:38:13,320 --> 01:38:14,160 STAKEHOLDERS SEATED AT THE 2723 01:38:14,160 --> 01:38:15,160 CONFERENCE TABLE. 2724 01:38:15,160 --> 01:38:16,920 THIS PROVIDED MORE IMMEDIACY, 2725 01:38:16,920 --> 01:38:19,360 MORE SENSE OF PARTNERSHIP THAT 2726 01:38:19,360 --> 01:38:21,480 REALLY ENRICHED THE NUMBERS AND 2727 01:38:21,480 --> 01:38:23,480 THE DATA FROM NEEDS ASSESSMENT 2728 01:38:23,480 --> 01:38:26,240 AND FOCUS GROUPS, ALLOWING US TO 2729 01:38:26,240 --> 01:38:28,080 DO QUICK PIVOTS AND ADJUSTMENTS. 2730 01:38:28,080 --> 01:38:29,960 THEN AS WE WERE IMPLEMENTING 2731 01:38:29,960 --> 01:38:31,440 PROJECTS, A SUBGROUP OF THESE 2732 01:38:31,440 --> 01:38:34,040 STAKEHOLDERS REALLY CONTINUED IN 2733 01:38:34,040 --> 01:38:35,640 WEEKLY MEETINGS, WEEKLY 2734 01:38:35,640 --> 01:38:37,320 MEETINGS, WITH A LINE ITEM ON 2735 01:38:37,320 --> 01:38:39,240 THE AGENDA SAYING, HEY, 2736 01:38:39,240 --> 01:38:40,640 COMMUNITY ADVISORS, DO YOU HAVE 2737 01:38:40,640 --> 01:38:42,600 ANYTHING YOU WANT TO COMMENT ON 2738 01:38:42,600 --> 01:38:45,280 AND IT WAS JUST COMPLETELY OPEN, 2739 01:38:45,280 --> 01:38:46,720 WHATEVER THEY WISH TO BRING TO 2740 01:38:46,720 --> 01:38:47,720 THE AGENDA. 2741 01:38:47,720 --> 01:38:51,680 THEY HELPED AVOID SOME MISSTEPS 2742 01:38:51,680 --> 01:38:55,280 FOR RECRUITMENT TACTICS AND 2743 01:38:55,280 --> 01:38:56,120 DISSEMINATION, WHAT SUBURBS TO 2744 01:38:56,120 --> 01:38:58,240 GO TO MAYBE, WHAT KEY COMMUNITY 2745 01:38:58,240 --> 01:38:59,800 SITES TO GO TO FOR RECRUITMENT, 2746 01:38:59,800 --> 01:39:02,320 HOW TO ADJUST TO COVID, HOW TO 2747 01:39:02,320 --> 01:39:03,440 DISSEMINATE INFORMATION ON 2748 01:39:03,440 --> 01:39:05,960 SOCIAL MEDIA, OR EMAILS OR 2749 01:39:05,960 --> 01:39:06,840 FLYERS IN THE WAITING ROOM. 2750 01:39:06,840 --> 01:39:09,920 AND THEN FOR THE ANNUAL CHICAGO 2751 01:39:09,920 --> 01:39:11,280 SICKLE CELL SUMMIT, THEY REALLY 2752 01:39:11,280 --> 01:39:13,000 HELPED SET THE AGENDA AND 2753 01:39:13,000 --> 01:39:13,880 PRIORITIZE TOPICS AND THEN 2754 01:39:13,880 --> 01:39:17,200 TOWARD THE LAST TWO YEARS OF THE 2755 01:39:17,200 --> 01:39:18,480 SUMMIT, DID THE HEAVY LIFTING OF 2756 01:39:18,480 --> 01:39:19,320 THE ORGANIZATION OF IT AND 2757 01:39:19,320 --> 01:39:20,720 REALLY RUNNING THINGS. 2758 01:39:20,720 --> 01:39:23,600 AT THE NATIONAL LEVEL, COMMUNITY 2759 01:39:23,600 --> 01:39:25,360 STAKEHOLDER ADVISORS JOINED OUR 2760 01:39:25,360 --> 01:39:28,080 NATIONAL IN-PERSON SCDIC 2761 01:39:28,080 --> 01:39:31,280 MEETINGS IN BETHESDA, SAT IN 2762 01:39:31,280 --> 01:39:32,400 NATCHER CONFERENCE ROOM MEETING 2763 01:39:32,400 --> 01:39:34,680 ROOM SPEAKING ACTIVELY IN WORK 2764 01:39:34,680 --> 01:39:36,240 GROUPS, MADE STATEMENTS ABOUT 2765 01:39:36,240 --> 01:39:39,240 HOW RESEARCH SHOULD BE DONE ON 2766 01:39:39,240 --> 01:39:40,440 AGE 45 YEARS AND UP IN SICKLE 2767 01:39:40,440 --> 01:39:42,400 CELL DISEASE, EVEN THOUGH THE 2768 01:39:42,400 --> 01:39:43,680 SCDIC PROJECT WAS CUTTING THE 2769 01:39:43,680 --> 01:39:45,480 AGE LIMIT AT 45. 2770 01:39:45,480 --> 01:39:47,480 AND THEN JOINED IN BOTH THE 2771 01:39:47,480 --> 01:39:48,800 INFORMAL CONSENSUS AND THEN THE 2772 01:39:48,800 --> 01:39:50,800 FORMAL DELPHI CONSENSUS PROCESS 2773 01:39:50,800 --> 01:39:52,680 TO SET THE DEFINITION OF UP 2774 01:39:52,680 --> 01:39:53,200 AFFILIATED PATIENTS. 2775 01:39:53,200 --> 01:39:54,080 THEY WERE VERY IMPORTANT FOR 2776 01:39:54,080 --> 01:39:55,720 THAT. 2777 01:39:55,720 --> 01:39:57,960 AND SOME WENT ON TO REACH OTHER 2778 01:39:57,960 --> 01:39:59,720 PROGRAMS AND OTHER RESEARCH 2779 01:39:59,720 --> 01:40:02,440 PROJECTS. 2780 01:40:02,440 --> 01:40:03,600 THEN FINALLY THE SUSTAINABILITY 2781 01:40:03,600 --> 01:40:04,360 FOR THE FUTURE. 2782 01:40:04,360 --> 01:40:05,520 SO SUSTAINABILITY IS REALLY 2783 01:40:05,520 --> 01:40:07,960 IMPORTANT, IT'S NOT HAVING 2784 01:40:07,960 --> 01:40:12,520 ONE-OFF GRANT FUNDING FOR 2785 01:40:12,520 --> 01:40:14,200 COMMUNITY -- OR BUILD UP AND GET 2786 01:40:14,200 --> 01:40:15,160 DISSOLVED. 2787 01:40:15,160 --> 01:40:16,720 SUSTAINABILITY WILL MEAN USING 2788 01:40:16,720 --> 01:40:18,680 TOOLS OF IMPLEMENTATION SCIENCE 2789 01:40:18,680 --> 01:40:20,080 TO DEMONSTRATE THE IMPACT AND 2790 01:40:20,080 --> 01:40:21,880 HAVE A THEORETICAL FRAMEWORK 2791 01:40:21,880 --> 01:40:25,080 SUCH AS THE READINESS 2792 01:40:25,080 --> 01:40:27,320 FRAMEWORKS, SUSTAINABILITY 2793 01:40:27,320 --> 01:40:28,280 READINESS STRATEGY, WHICH IS AN 2794 01:40:28,280 --> 01:40:32,720 ADAPTATION OF THE IMPL IMPLEMENN 2795 01:40:32,720 --> 01:40:34,360 SCIENCE GETTING TO OUTCOMES THAT 2796 01:40:34,360 --> 01:40:37,520 WE'VE BEEN USING A LOT AT OUR 2797 01:40:37,520 --> 01:40:38,400 SITE IN CHICAGO. 2798 01:40:38,400 --> 01:40:40,000 FINALLY I WANT TO MENTION I'M 2799 01:40:40,000 --> 01:40:41,920 OLD ENOUGH TO REMEMBER THE NIH 2800 01:40:41,920 --> 01:40:42,680 COMPREHENSIVE SICKLE CELL 2801 01:40:42,680 --> 01:40:45,240 CENTERS WERE ALL REQUIRED TO 2802 01:40:45,240 --> 01:40:48,640 HAVE COMMUNITY INVOLVEMENT, 2803 01:40:48,640 --> 01:40:50,000 CONSIDERED ONE LEG OF THE 2804 01:40:50,000 --> 01:40:53,120 THREE-LEGGED STOOL REQUIRED 2805 01:40:53,120 --> 01:40:54,160 BUT -- CELEBRATE IMPLEMENTATION 2806 01:40:54,160 --> 01:40:55,600 SCIENCE IS BRINGING US TOOLS TO 2807 01:40:55,600 --> 01:40:57,240 MEASURE HOW COMMUNITY 2808 01:40:57,240 --> 01:40:58,320 STAKEHOLDER ADVISORS CONTRIBUTE 2809 01:40:58,320 --> 01:41:01,000 AND WE CAN REALLY KNOW HOW THEY 2810 01:41:01,000 --> 01:41:02,400 ARE INTEGRAL PARTNERS IN 2811 01:41:02,400 --> 01:41:03,400 RESEARCH IN SICKLE CELL DISEASE 2812 01:41:03,400 --> 01:41:06,240 AND OTHER TOPICS. 2813 01:41:06,240 --> 01:41:07,600 WITH THAT, I'M GOING TO HAND 2814 01:41:07,600 --> 01:41:09,920 OVER THE REST OF THE TIME TO 2815 01:41:09,920 --> 01:41:13,760 BRIDGET REYNOLDS. 2816 01:41:13,760 --> 01:41:14,280 >> HI. 2817 01:41:14,280 --> 01:41:16,240 THANK YOU FOR ALLOWING ME TO 2818 01:41:16,240 --> 01:41:19,000 SPEAK TODAY ON MY EXPERIENCES AS 2819 01:41:19,000 --> 01:41:20,240 A COMMUNITY ADVISORY BOARD 2820 01:41:20,240 --> 01:41:20,880 MEMBER. 2821 01:41:20,880 --> 01:41:23,840 AND I'D LIKE TO TALK ABOUT FIRST 2822 01:41:23,840 --> 01:41:25,200 OF ALL HOW DO YOU BECOME ONE, 2823 01:41:25,200 --> 01:41:27,080 WHAT DOES IT TAKE TO BECOME AN 2824 01:41:27,080 --> 01:41:28,280 ADVISOR, WHAT WERE THE 2825 01:41:28,280 --> 01:41:28,920 RESEARCHERS LOOKING FOR? 2826 01:41:28,920 --> 01:41:30,320 THEY WERE BEING LOOKING FOR 2827 01:41:30,320 --> 01:41:31,160 MEMBERS OF THE COMMUNITY FROM 2828 01:41:31,160 --> 01:41:34,280 ONE OR MORE HOSPITAL SITES, AND 2829 01:41:34,280 --> 01:41:35,600 IDEALLY THERE SHOULD BE NO 2830 01:41:35,600 --> 01:41:37,000 MAXIMUM AGE UNLESS IT'S CRITICAL 2831 01:41:37,000 --> 01:41:39,120 TO THE OUTCOME OF THE STUDY. 2832 01:41:39,120 --> 01:41:41,160 YOU SHOULD BE PROACTIVE. 2833 01:41:41,160 --> 01:41:42,640 YOU SHOULD WANT TO PARTNER IN 2834 01:41:42,640 --> 01:41:44,720 YOUR CARE AND HAVE A GENUINE 2835 01:41:44,720 --> 01:41:46,320 DESIRE TO ADVANCE THE SCIENCE. 2836 01:41:46,320 --> 01:41:48,240 AND THERE SHOULD BE A BIT OF 2837 01:41:48,240 --> 01:41:49,600 CURIOSITY ABOUT YOUR DISEASE AND 2838 01:41:49,600 --> 01:41:51,120 HOW IT AFFECTS YOU. 2839 01:41:51,120 --> 01:41:53,160 AND THAT SHOULD EXTEND BEYOND 2840 01:41:53,160 --> 01:41:55,760 YOURSELF TO OTHERS, REQUIRING A 2841 01:41:55,760 --> 01:41:56,880 BIT OF ALTRUISM. 2842 01:41:56,880 --> 01:41:59,360 AND FINALLY, YOU SHOULD HAVE 2843 01:41:59,360 --> 01:42:01,680 GOOD COMMUNICATION SKILLS. 2844 01:42:01,680 --> 01:42:03,480 YOU SHOULD BE OBJECTIVE AND COME 2845 01:42:03,480 --> 01:42:11,240 FROM A SINCERE PLACE. 2846 01:42:11,240 --> 01:42:12,800 WHAT DO WE DO? 2847 01:42:12,800 --> 01:42:14,560 WELL, WE PLAN AND HOST THE 2848 01:42:14,560 --> 01:42:15,640 ANNUAL CHICAGO SICKLE CELL 2849 01:42:15,640 --> 01:42:15,960 SUMMIT. 2850 01:42:15,960 --> 01:42:19,400 WE PARTICIPATE IN WEEKLY ISAAC 2851 01:42:19,400 --> 01:42:19,800 MEETINGS. 2852 01:42:19,800 --> 01:42:20,920 WE PARTICIPATE IN QUARTERLY 2853 01:42:20,920 --> 01:42:22,680 COMMUNITY ADVISORY BOARD 2854 01:42:22,680 --> 01:42:24,440 MEETINGS. 2855 01:42:24,440 --> 01:42:26,680 AND IN SCDIC WORK GROUPS ON THE 2856 01:42:26,680 --> 01:42:27,760 THREE INTERVENTIONS: ALIGN, 2857 01:42:27,760 --> 01:42:30,680 MESH AND UNAFFILIATED PATIENTS. 2858 01:42:30,680 --> 01:42:32,840 AND WE FORM OUR OWN ISAAC WORK 2859 01:42:32,840 --> 01:42:34,680 GROUPS. 2860 01:42:34,680 --> 01:42:39,520 WE -- SUCH AS WHEN WE PLANNED A 2861 01:42:39,520 --> 01:42:40,280 SUMMIT. 2862 01:42:40,280 --> 01:42:42,000 AND WE SURVEY THE SICKLE CELL 2863 01:42:42,000 --> 01:42:42,600 COMMUNITY, MAYBE FOR SOMETHING 2864 01:42:42,600 --> 01:42:45,040 WE NEED TO KNOW OR AT THE BEHEST 2865 01:42:45,040 --> 01:42:46,440 OF RESEARCHERS. 2866 01:42:46,440 --> 01:42:48,360 AND WHO MAY WANT A BROADER 2867 01:42:48,360 --> 01:42:49,360 PERSPECTIVE ON SOMETHING. 2868 01:42:49,360 --> 01:42:51,600 AND THEN WE MAY DRAFT POSITION 2869 01:42:51,600 --> 01:42:52,200 STATEMENTS. 2870 01:42:52,200 --> 01:42:53,720 IF THERE'S SOMETHING THAT WE 2871 01:42:53,720 --> 01:42:57,240 FEEL NEEDS ATTENTION, WE WILL DO 2872 01:42:57,240 --> 01:42:58,800 A POSITION STATEMENT ON THAT, 2873 01:42:58,800 --> 01:43:01,000 AND THEN WE CAN PUSH THAT UP TO 2874 01:43:01,000 --> 01:43:01,640 NIH. 2875 01:43:01,640 --> 01:43:04,200 WE SELECT ONE PERSON FROM THE 2876 01:43:04,200 --> 01:43:06,320 ADVISORY BOARD TO REPRESENT US 2877 01:43:06,320 --> 01:43:09,440 AT THE ANNUAL NIH MEETINGS. 2878 01:43:09,440 --> 01:43:11,320 AND THERE, YOU ARE NOT JUST A 2879 01:43:11,320 --> 01:43:13,880 PASSIVE PARTICIPANT, BUT YOU CAN 2880 01:43:13,880 --> 01:43:15,720 ACTIVELY PARTICIPATE AND HAVE 2881 01:43:15,720 --> 01:43:17,160 INPUT WHICH WILL BE HEARD. 2882 01:43:17,160 --> 01:43:19,160 IT'S VERY ACTIONABLE. 2883 01:43:19,160 --> 01:43:21,000 AND THAT PERSON WILL COME BACK 2884 01:43:21,000 --> 01:43:22,680 AND UPDATE US ON THE PROCEEDINGS 2885 01:43:22,680 --> 01:43:25,480 OF THAT NEEDING. MEETING. 2886 01:43:25,480 --> 01:43:26,200 >> THIS IS ROBERT. 2887 01:43:26,200 --> 01:43:27,880 I JUST WANT TO GIVE YOU A 2888 01:43:27,880 --> 01:43:28,280 2-MINUTE WARNING. 2889 01:43:28,280 --> 01:43:29,200 >> OKAY. 2890 01:43:29,200 --> 01:43:29,640 EMPOWERMENT. 2891 01:43:29,640 --> 01:43:30,640 WHY BE INVOLVED? 2892 01:43:30,640 --> 01:43:32,040 BECAUSE YOU WANT TO -- WE WANT 2893 01:43:32,040 --> 01:43:33,640 TO HAVE EQUITY, SKIN IN THE 2894 01:43:33,640 --> 01:43:34,840 GAME, WE WANT TO BUILD TRUST 2895 01:43:34,840 --> 01:43:37,440 BETWEEN THE PEOPLE WHO ARE 2896 01:43:37,440 --> 01:43:38,600 STUDYING US AND WHO ARE 2897 01:43:38,600 --> 01:43:41,960 PROVIDING CARE DESIGN FOR US. 2898 01:43:41,960 --> 01:43:43,920 THERE IS BIDIRECTIONAL TRUST. 2899 01:43:43,920 --> 01:43:45,520 WE KNOW THE RESEARCHERS, WE KNOW 2900 01:43:45,520 --> 01:43:47,160 THE TEAM AND THEY KNOW US. 2901 01:43:47,160 --> 01:43:49,120 WE WANT TO CONTRIBUTE AND 2902 01:43:49,120 --> 01:43:50,480 PARTNER SOLUTIONS, PROVIDE REAL 2903 01:43:50,480 --> 01:43:51,800 LIFE EXPERIENCES AND 2904 01:43:51,800 --> 01:43:53,240 PERSPECTIVES THAT WILL KEEP THAT 2905 01:43:53,240 --> 01:43:55,120 RESEARCH RELEVANT FOR THE 2906 01:43:55,120 --> 01:43:56,600 RESEARCHER AND THE SICKLE CELL 2907 01:43:56,600 --> 01:43:58,360 COMMUNITY. 2908 01:43:58,360 --> 01:44:00,520 AND THERE ARE PERKS. 2909 01:44:00,520 --> 01:44:01,280 ACCOMPLISHMENT, CAMARADERIE, 2910 01:44:01,280 --> 01:44:02,800 TEAM WORK, A SENSE OF PURPOSE 2911 01:44:02,800 --> 01:44:06,360 THAT IS BOOSTED BY YOUR ABILITY 2912 01:44:06,360 --> 01:44:07,560 TO INFLUENCE THE AGENDA ON THE 2913 01:44:07,560 --> 01:44:09,760 LOCAL AND THE NATIONAL LEVEL. 2914 01:44:09,760 --> 01:44:11,560 AND WHAT'S MORE, YOU ARE 2915 01:44:11,560 --> 01:44:14,080 LEARNING FROM A DIVERSE GROUP OF 2916 01:44:14,080 --> 01:44:14,840 PROFESSIONALS, AND SOME OF YOUR 2917 01:44:14,840 --> 01:44:17,840 PEERS ARE PROFESSIONALS TOO, AND 2918 01:44:17,840 --> 01:44:19,120 IMPLEMENTATION SCIENCE, 2919 01:44:19,120 --> 01:44:20,120 SCIENTISTS, TRANSLATIONAL 2920 01:44:20,120 --> 01:44:21,120 SCIENTISTS AND THE LOT. 2921 01:44:21,120 --> 01:44:22,840 YOU HAVE A SEAT AT THE TABLE, 2922 01:44:22,840 --> 01:44:29,920 AND A REAL SENSE OF BELONGING. 2923 01:44:29,920 --> 01:44:31,800 AND FINALLY, THESE ARE SOME OF 2924 01:44:31,800 --> 01:44:34,600 MY PEERS ON THE ADVISORY BOARD, 2925 01:44:34,600 --> 01:44:36,840 AND I'D LIKE -- THESE ARE SOME 2926 01:44:36,840 --> 01:44:40,480 QUOTE FROM MY PEERS. 2927 01:44:40,480 --> 01:44:42,480 AND MAXCINE SAYS SHE LOOKS 2928 01:44:42,480 --> 01:44:43,560 FORWARD TO WORKING ON MORE 2929 01:44:43,560 --> 01:44:45,760 PROJECTS AND FINDING WAYS TO 2930 01:44:45,760 --> 01:44:47,400 HELP IMPROVE THE HEALTH OF THE 2931 01:44:47,400 --> 01:44:48,480 SICKLE CELL COMMUNITY. 2932 01:44:48,480 --> 01:44:49,920 BEVERLY SAYS THE OPPORTUNITY HAS 2933 01:44:49,920 --> 01:44:51,120 EMPOWERED HER AND HAS GIVEN HER 2934 01:44:51,120 --> 01:44:52,120 A SENSE OF BELONGING WORKING 2935 01:44:52,120 --> 01:44:53,320 WITH THE RESEARCH TEAM AT THE 2936 01:44:53,320 --> 01:44:54,520 LOCAL AND NATIONAL LEVELS. 2937 01:44:54,520 --> 01:44:57,360 AND FINALLY, DORINDA SAYS THAT 2938 01:44:57,360 --> 01:44:59,160 HER VOICE AND THAT OF OTHER 2939 01:44:59,160 --> 01:45:02,160 INDIVIDUALS WITH SICKLE CELL IS 2940 01:45:02,160 --> 01:45:03,440 WELCOMED, HEARD AND VALUED. 2941 01:45:03,440 --> 01:45:05,040 AND THANK YOU SO MUCH FOR YOUR 2942 01:45:05,040 --> 01:45:07,160 TIME, AND I'D LIKE TO OPEN THIS 2943 01:45:07,160 --> 01:45:08,520 UP TO OUR PANEL TO ANSWER 2944 01:45:08,520 --> 01:45:14,120 QUESTIONS. 2945 01:45:14,120 --> 01:45:15,440 DO WE HAVE ANY QUESTIONS? 2946 01:45:15,440 --> 01:45:17,280 >> I DON'T SEE ANY QUESTIONS IN 2947 01:45:17,280 --> 01:45:18,440 THE QUEUE. 2948 01:45:18,440 --> 01:45:20,400 YOU MAY JUST CHECK, I THINK 2949 01:45:20,400 --> 01:45:21,800 THERE'S SOME ROLLING THINGS IN 2950 01:45:21,800 --> 01:45:22,880 THE CHAT. 2951 01:45:22,880 --> 01:45:24,800 BUT WE'VE RUN OUT OF TIME FOR 2952 01:45:24,800 --> 01:45:25,520 THIS SESSION. 2953 01:45:25,520 --> 01:45:29,320 SO IT'S TIME TO MOVE ON TO THE 2954 01:45:29,320 --> 01:45:38,640 NEXT ONE. 2955 01:45:38,640 --> 01:45:40,080 IF YOU CAN BRING UP THE SLIDES 2956 01:45:40,080 --> 01:45:41,440 FOR THE LIFETIME NARRATIVE. 2957 01:45:41,440 --> 01:45:45,240 THANK YOU. 2958 01:45:45,240 --> 01:45:47,320 THIS PROJECT AS YOU CAN SEE IS 2959 01:45:47,320 --> 01:45:50,080 ONE OF THE PROJECTS THAT WERE 2960 01:45:50,080 --> 01:45:52,520 DONE BY THE SCDIC AND WE ARE IN 2961 01:45:52,520 --> 01:45:54,840 THE PROCESS OF COMPLETING THE 2962 01:45:54,840 --> 01:46:05,000 ANALYSIS. 2963 01:46:06,160 --> 01:46:08,520 SO THIS IS A QUALITATIVE 2964 01:46:08,520 --> 01:46:08,840 PROJECT. 2965 01:46:08,840 --> 01:46:11,600 IT GREW OUT OF OUR DISCUSSIONS 2966 01:46:11,600 --> 01:46:14,440 ABOUT WHAT IS UNAFFILIATION, AND 2967 01:46:14,440 --> 01:46:16,120 WHAT DOES IT MEAN TO PEOPLE TO 2968 01:46:16,120 --> 01:46:20,440 NOT BE ENGAGED IN CARE VERSUS 2969 01:46:20,440 --> 01:46:20,880 ENGAGED IN CARE. 2970 01:46:20,880 --> 01:46:22,120 WE REALLY COULDN'T ANSWER THIS 2971 01:46:22,120 --> 01:46:23,840 FROM THE INDIVIDUAL WITH SICKLE 2972 01:46:23,840 --> 01:46:25,480 CELL DISEASE'S PERSPECTIVE, SO 2973 01:46:25,480 --> 01:46:27,040 WE DEVELOPED A RESEARCH 2974 01:46:27,040 --> 01:46:28,800 QUESTION, HOW DO PARTICIPANTS, 2975 01:46:28,800 --> 01:46:30,800 PATIENTS WITH SICKLE CELL 2976 01:46:30,800 --> 01:46:31,560 DISEASE, UNDERSTAND OR VIEW 2977 01:46:31,560 --> 01:46:33,120 THEIR ENGAGEMENT IN MEDICAL CARE 2978 01:46:33,120 --> 01:46:37,640 AND FREETM TREATMENT FOR THEIR ? 2979 01:46:37,640 --> 01:46:39,160 AND THAT IS WHAT GUIDED OUR 2980 01:46:39,160 --> 01:46:42,880 RESEARCH. 2981 01:46:42,880 --> 01:46:43,880 SO OUR METHODS. 2982 01:46:43,880 --> 01:46:45,720 I'M REVIEWING THIS VERY QUICKLY, 2983 01:46:45,720 --> 01:46:46,680 IF PEOPLE HAVE QUESTION, 2984 01:46:46,680 --> 01:46:47,840 SPECIFIC QUESTIONS, I CAN FOLLOW 2985 01:46:47,840 --> 01:46:49,280 UP ON THE CHAT. 2986 01:46:49,280 --> 01:46:50,760 WE USED A NARRATIVE APPROACH 2987 01:46:50,760 --> 01:46:53,040 WITH A TWO-STEP INTERVIEW 2988 01:46:53,040 --> 01:46:54,240 SCHEDULE, AND WE ASKED THE 2989 01:46:54,240 --> 01:46:55,520 PARTICIPANTS TO RECOUNT THEIR 2990 01:46:55,520 --> 01:46:56,640 TREATMENT HISTORY WITH A FOCUS 2991 01:46:56,640 --> 01:47:00,120 ON THEIR CHANGING ENGAGEMENT IN 2992 01:47:00,120 --> 01:47:00,320 CARE. 2993 01:47:00,320 --> 01:47:01,680 WE ALSO ASKED PARTICIPANTS, AND 2994 01:47:01,680 --> 01:47:03,000 YOU CAN SEE ON THE RIGHT-HAND 2995 01:47:03,000 --> 01:47:05,640 SIDE OF THE SCREEN, WE CREATED A 2996 01:47:05,640 --> 01:47:09,320 TABLE OR A LOG OF EVENTS, AND WE 2997 01:47:09,320 --> 01:47:10,640 USED -- WE HAD THE PARTICIPANTS 2998 01:47:10,640 --> 01:47:12,600 HELP US CREATE THIS JOINTLY OR 2999 01:47:12,600 --> 01:47:15,520 TO RATIFY ONE OF THESE TABLES IF 3000 01:47:15,520 --> 01:47:17,720 WE CREATED IT, AND THEN ALSO TO 3001 01:47:17,720 --> 01:47:20,120 SORT OF RATE THESE EVENTS TO 3002 01:47:20,120 --> 01:47:21,920 BEING POSITIVE, NEGATIVE OR 3003 01:47:21,920 --> 01:47:22,800 NEUTRAL. 3004 01:47:22,800 --> 01:47:24,120 INTERVIEWERS WERE TRAINED AT 3005 01:47:24,120 --> 01:47:25,320 EACH SITE. 3006 01:47:25,320 --> 01:47:27,120 INTERVIEWS WERE CONDUCTED 3007 01:47:27,120 --> 01:47:31,520 LOCALLY, TRAN SCRIBED AND TRANSD 3008 01:47:31,520 --> 01:47:35,880 UPLOADED TO A 1 CENTRAL 3009 01:47:35,880 --> 01:47:36,200 REPOSITORY. 3010 01:47:36,200 --> 01:47:37,160 I'M GOING TO GO THROUGH THIS 3011 01:47:37,160 --> 01:47:38,280 QUICKLY BECAUSE I DON'T WANT TO 3012 01:47:38,280 --> 01:47:38,880 RUN OUT OF TIME. 3013 01:47:38,880 --> 01:47:40,600 HERE YOU CAN READ OUR 3014 01:47:40,600 --> 01:47:42,120 RECRUITMENT METHODS OF HOW WE 3015 01:47:42,120 --> 01:47:43,240 FOUND PEOPLE WHO MET THE 3016 01:47:43,240 --> 01:47:45,920 DEFINITION OF UNAFFILIATED. 3017 01:47:45,920 --> 01:47:47,920 AND THEN OUR INCLUSION CRITERIA, 3018 01:47:47,920 --> 01:47:49,600 THESE ARE PEOPLE OVER THE AGE OF 3019 01:47:49,600 --> 01:47:51,360 18, THEY HAD A VERIFIED 3020 01:47:51,360 --> 01:47:53,120 DIAGNOSIS OF SCD, WHICH WE 3021 01:47:53,120 --> 01:47:54,840 DEVELOPED AS PART OF THE -- OR 3022 01:47:54,840 --> 01:47:56,440 MET AS PART OF THE INTERVIEW 3023 01:47:56,440 --> 01:47:56,960 PROCESS. 3024 01:47:56,960 --> 01:48:01,800 THEY MET THE DEFINITION OF 3025 01:48:01,800 --> 01:48:03,240 UNAFFILIATED FROM THE DELPHI 3026 01:48:03,240 --> 01:48:03,520 STUDY. 3027 01:48:03,520 --> 01:48:06,280 AND YOU CAN SEE THE DEFINITION 3028 01:48:06,280 --> 01:48:08,040 BELOW. 3029 01:48:08,040 --> 01:48:09,880 SO OUR ANALYSIS PROCESS. 3030 01:48:09,880 --> 01:48:12,120 A NARRATIVE APPROACH FOCUSES ON 3031 01:48:12,120 --> 01:48:14,120 THE STORIES THAT PARTICIPANTS 3032 01:48:14,120 --> 01:48:16,080 TELL DURING THE INTERVIEWS. 3033 01:48:16,080 --> 01:48:17,880 THIS IS A LITTLE DIFFERENT FROM 3034 01:48:17,880 --> 01:48:19,840 OTHER QUALITATIVE APPROACHES. 3035 01:48:19,840 --> 01:48:23,120 SO THE ANALYSIS ATTENDS TO THE 3036 01:48:23,120 --> 01:48:24,400 PARTICIPANTS' ACTION IN THE 3037 01:48:24,400 --> 01:48:26,240 STORY, STORY OUTCOMES, YOU CAN 3038 01:48:26,240 --> 01:48:28,440 PLOT -- YOU CAN SORT OF PLOT OR 3039 01:48:28,440 --> 01:48:30,800 GRAPH PLOT LINES OR LOOK AT 3040 01:48:30,800 --> 01:48:31,560 CHARACTERIZATIONS, SO IT'S A 3041 01:48:31,560 --> 01:48:33,080 LITTLE BIT DIFFERENT FROM 3042 01:48:33,080 --> 01:48:35,720 REGULAR QUALITATIVE WORK. 3043 01:48:35,720 --> 01:48:37,520 THE DATA COLLECTION IS RICH AND 3044 01:48:37,520 --> 01:48:38,960 COMPLEX, AND TODAY BUT WE'RE 3045 01:48:38,960 --> 01:48:39,920 ONLY GOING TO SHARE JUST A 3046 01:48:39,920 --> 01:48:44,200 LITTLE BIT OF THIS DATA, AND 3047 01:48:44,200 --> 01:48:46,320 THIS IS A PARTICIPANT'S 3048 01:48:46,320 --> 01:48:47,680 RATIONALE IN COMING AND GOING 3049 01:48:47,680 --> 01:48:48,120 FROM CARE. 3050 01:48:48,120 --> 01:48:49,320 IN ADDITION TO THE NARRATIVE 3051 01:48:49,320 --> 01:48:51,040 ANALYSIS THAT WE'RE CURRENTLY 3052 01:48:51,040 --> 01:48:53,000 COMPLETING, WE ALSO COMPLETED A 3053 01:48:53,000 --> 01:48:55,240 RAPID QUALITATIVE ANALYSIS OF 3054 01:48:55,240 --> 01:48:56,760 THE TRANSCRIPTS, AND THAT 3055 01:48:56,760 --> 01:48:58,000 INFORMATION HAS ALSO INFORMED 3056 01:48:58,000 --> 01:49:02,440 WHAT WE PRESENT TODAY. 3057 01:49:02,440 --> 01:49:03,560 SO THESE WERE OUR PARTICIPANTS. 3058 01:49:03,560 --> 01:49:05,200 YOU CAN SEE THESE WERE FROM SIX 3059 01:49:05,200 --> 01:49:08,760 OF THE EIGHT SITES THAT WERE 3060 01:49:08,760 --> 01:49:09,840 PARTICIPATING IN THE SCDIC 3061 01:49:09,840 --> 01:49:15,440 CONSORTIUM. 3062 01:49:15,440 --> 01:49:16,920 SO OUR PRIMARY FINDINGS. 3063 01:49:16,920 --> 01:49:18,520 THE DATA ANALYSIS IS IN PROCESS, 3064 01:49:18,520 --> 01:49:19,760 AND WE ARE SHARING PRELIMINARY 3065 01:49:19,760 --> 01:49:20,760 RESULTS. 3066 01:49:20,760 --> 01:49:22,120 AND I WANT TO TAKE A MOMENT, 3067 01:49:22,120 --> 01:49:23,240 WHENEVER YOU'RE DOING 3068 01:49:23,240 --> 01:49:24,440 QUALITATIVE WORK, IT'S ALWAYS 3069 01:49:24,440 --> 01:49:26,760 VERY IMPORTANT TO SORT OF ENGAGE 3070 01:49:26,760 --> 01:49:29,840 IN A CERTAIN AMOUNT OF 3071 01:49:29,840 --> 01:49:31,040 INVESTIGATOR REFLEXIVITY. 3072 01:49:31,040 --> 01:49:33,280 SO WHEN WE BEGAN THIS PROCESS, 3073 01:49:33,280 --> 01:49:35,120 THERE WERE ASSUMPTIONS WE MADE 3074 01:49:35,120 --> 01:49:36,800 THAT ULTIMATELY HAVE BECOME 3075 01:49:36,800 --> 01:49:37,880 CHALLENGED AS WE DID THIS. 3076 01:49:37,880 --> 01:49:39,200 SO ONE OF THE ASSUMPTIONS THAT 3077 01:49:39,200 --> 01:49:41,440 WE MADE WAS THAT PATIENTS ARE 3078 01:49:41,440 --> 01:49:43,880 GOING TO VIEW THEIR ILLNESS 3079 01:49:43,880 --> 01:49:45,400 PROCESS IN THE SAME WAY OR A 3080 01:49:45,400 --> 01:49:46,480 SIMILAR WAY THAT PROVIDERS DO. 3081 01:49:46,480 --> 01:49:48,640 THE IDEA OF BEING ENGAGED IN 3082 01:49:48,640 --> 01:49:50,920 CARE OR NOT ENGAGED IN CARE. 3083 01:49:50,920 --> 01:49:53,000 AND AS WE LISTEN TO THE STORIES 3084 01:49:53,000 --> 01:49:55,800 OF PARTICIPANTS, THEY HAD A VERY 3085 01:49:55,800 --> 01:49:56,920 DIFFERENT -- THEY HAD A 3086 01:49:56,920 --> 01:49:57,960 DIFFERENT UNDERSTANDING, AND 3087 01:49:57,960 --> 01:49:59,080 I'LL TALK A LITTLE BIT ABOUT 3088 01:49:59,080 --> 01:50:00,000 THAT. 3089 01:50:00,000 --> 01:50:01,080 AND SO SOME OF OUR ASSUMPTIONS 3090 01:50:01,080 --> 01:50:04,400 WERE ACTUALLY CHALLENGED BY OUR 3091 01:50:04,400 --> 01:50:04,760 PARTICIPANTS. 3092 01:50:04,760 --> 01:50:06,200 AND THE OTHER IDEA THAT WE 3093 01:50:06,200 --> 01:50:08,520 STARTED WITH WAS THAT A LIFE 3094 01:50:08,520 --> 01:50:10,600 NARRATIVE WOULD CAPTURE THE 3095 01:50:10,600 --> 01:50:12,440 ILLNESS EXPERIENCE AND THE 3096 01:50:12,440 --> 01:50:14,400 REASONS FOR ENGAGING AND NOT -- 3097 01:50:14,400 --> 01:50:16,240 AND FOR LEAVING CARE, AND AS 3098 01:50:16,240 --> 01:50:19,280 WE'VE DONE THE ANALYSIS, WE ARE 3099 01:50:19,280 --> 01:50:20,680 REFLECTING THAT POSSIBLY AN 3100 01:50:20,680 --> 01:50:22,080 ILLNESS NARRATIVE THAT WE 3101 01:50:22,080 --> 01:50:24,720 THOUGHT WOULD BE INFORMATIVE MAY 3102 01:50:24,720 --> 01:50:26,160 NOT HAVE BEEN THE BEST WAY TO 3103 01:50:26,160 --> 01:50:28,400 CAPTURE THIS DATA, BUT WE THINK 3104 01:50:28,400 --> 01:50:30,040 NONETHELESS WE'VE GOTTEN SOME 3105 01:50:30,040 --> 01:50:36,160 VERY INTERESTING RESULTS. 3106 01:50:36,160 --> 01:50:38,640 SO THE PATIENTS' PERSPECTIVE, 3107 01:50:38,640 --> 01:50:39,600 THE REASONS FOR NOT BEING IN 3108 01:50:39,600 --> 01:50:39,840 CARE. 3109 01:50:39,840 --> 01:50:41,720 SO THESE ARE QUOTES OR 3110 01:50:41,720 --> 01:50:42,440 ABSTRACTIONS OF QUOTES. 3111 01:50:42,440 --> 01:50:45,040 SO WHAT WE FOUND WAS THAT 3112 01:50:45,040 --> 01:50:45,840 OFTENTIMES INDIVIDUALS HAD 3113 01:50:45,840 --> 01:50:48,520 BREAKS IN CARE, AND THEY 3114 01:50:48,520 --> 01:50:49,640 DESCRIBE MOVING, GOING TO 3115 01:50:49,640 --> 01:50:52,240 COLLEGE, GETTING A NEW JOB, AND 3116 01:50:52,240 --> 01:50:55,840 THAT PARTICIPANTS MADE CHOICES 3117 01:50:55,840 --> 01:50:57,480 AFTER NOT -- MADE CHOICES 3118 01:50:57,480 --> 01:50:59,000 FOLLOWING THESE BREAKS IN CARE 3119 01:50:59,000 --> 01:51:01,080 NOT TO RE-ENGAGE OR TO FOLLOW UP 3120 01:51:01,080 --> 01:51:02,360 IN REFERRALS. 3121 01:51:02,360 --> 01:51:03,680 AND WHAT'S HIGHLIGHTED THERE IN 3122 01:51:03,680 --> 01:51:07,360 YELLOW IS THIS IS SOME OF OUR 3123 01:51:07,360 --> 01:51:10,520 REFLECTION OF THE ANALYSIS 3124 01:51:10,520 --> 01:51:11,600 PROCESS, EITHER WHERE WE ARE 3125 01:51:11,600 --> 01:51:13,480 SHARING WITH YOU OUR SYNTHESIS 3126 01:51:13,480 --> 01:51:15,400 OR WHERE WE'RE STILL DEBATING AS 3127 01:51:15,400 --> 01:51:16,200 INVESTIGATORS. 3128 01:51:16,200 --> 01:51:20,400 FLIESH SO HERE TSO HERE THERE'SN 3129 01:51:20,400 --> 01:51:22,880 INFERENCE THAT ABSENCE OF THE 3130 01:51:22,880 --> 01:51:24,080 PEOPLE -- WITHOUT THE SICKLE 3131 01:51:24,080 --> 01:51:25,760 CELL DISEASE COMMUNITY OR 3132 01:51:25,760 --> 01:51:28,040 PERSONAL CONNECTIONS WITH 3133 01:51:28,040 --> 01:51:29,080 PROVIDERS, THAT THIS SEEMED TO 3134 01:51:29,080 --> 01:51:31,840 GET IN THE WAY OF CONNECTIVITY. 3135 01:51:31,840 --> 01:51:33,920 SO WHEN PEOPLE LEFT AND WENT 3136 01:51:33,920 --> 01:51:36,960 SOMEWHERE, THEY DIDN'T HAVE 3137 01:51:36,960 --> 01:51:37,920 THESE COMMUNITY AND PERSONAL 3138 01:51:37,920 --> 01:51:39,680 SUPPORTS OR CONNECTIONS, AND 3139 01:51:39,680 --> 01:51:43,160 THAT SEEMED TO FOSTER PEOPLE NOT 3140 01:51:43,160 --> 01:51:44,760 GOING BACK INTO CARE. 3141 01:51:44,760 --> 01:51:46,280 THERE WASN'T A PROMPT. 3142 01:51:46,280 --> 01:51:48,480 PEOPLE ALSO HAD DIFFICULTY 3143 01:51:48,480 --> 01:51:50,120 GETTING OUTPATIENT AND CLINIC 3144 01:51:50,120 --> 01:51:51,960 APPOINTMENTS, AND SCHEDULING WAS 3145 01:51:51,960 --> 01:51:53,240 MENTIONED VERY FREQUENTLY, THE 3146 01:51:53,240 --> 01:51:55,640 IDEA THAT MANY OF OUR INTERVIEW 3147 01:51:55,640 --> 01:51:59,440 SUBJECTS WERE YOUNG ADULTS, MOST 3148 01:51:59,440 --> 01:52:00,520 IF NOT ALL OF THEM ARE WORKING. 3149 01:52:00,520 --> 01:52:02,080 IT IS VERY HARD TO FIND CLINIC 3150 01:52:02,080 --> 01:52:03,800 TIMES THAT ARE NOT OVERLAPPING 3151 01:52:03,800 --> 01:52:05,200 WITH WORK TIME. 3152 01:52:05,200 --> 01:52:09,040 AND THAT WAS AN IMPORTANT 3153 01:52:09,040 --> 01:52:09,560 DISCUSSION POINT. 3154 01:52:09,560 --> 01:52:11,560 INDIVIDUALS ALSO HAD 3155 01:52:11,560 --> 01:52:13,080 MISINFORMATION, AND THIS 3156 01:52:13,080 --> 01:52:15,040 MISINFORMATION LED THEM NOT TO 3157 01:52:15,040 --> 01:52:17,320 SEEK CARE ONCE THEY LEFT CARE. 3158 01:52:17,320 --> 01:52:21,160 SO THIS WAS AN EXTREME EXAMPLE, 3159 01:52:21,160 --> 01:52:23,080 BUT ONE OF OUR RESPONDENTS SAID 3160 01:52:23,080 --> 01:52:25,240 IN THEIR FAMILY, ONLY MEN CAN 3161 01:52:25,240 --> 01:52:27,000 GET SICKLE CELL DISEASE AND THAT 3162 01:52:27,000 --> 01:52:28,440 WOMEN DIDN'T GET SICKLE CELL 3163 01:52:28,440 --> 01:52:29,040 DISEASE. 3164 01:52:29,040 --> 01:52:33,280 AND YOU KNOW, THIS IS LATER 3165 01:52:33,280 --> 01:52:34,280 DISPELLED BUT THE BELIEF 3166 01:52:34,280 --> 01:52:36,360 WASHINGS AS A YOUNG WOMAN, I 3167 01:52:36,360 --> 01:52:38,000 DON'T NEED TO GET CARE BECAUSE 3168 01:52:38,000 --> 01:52:38,640 SICKLE CELL DISEASE DOESN'T 3169 01:52:38,640 --> 01:52:40,040 AFFECT WOMEN. 3170 01:52:40,040 --> 01:52:41,120 TRANSPORTATION FOR NON-ACUTE 3171 01:52:41,120 --> 01:52:42,320 CARE VISIT TREATMENTS WAS ALSO 3172 01:52:42,320 --> 01:52:47,320 VERY IMPORTANT. 3173 01:52:47,320 --> 01:52:48,600 ONE OF THE PARTICIPANTS SAID I 3174 01:52:48,600 --> 01:52:50,200 WENT OUT THERE A COUPLE OF TIMES 3175 01:52:50,200 --> 01:52:51,760 BUT I DIDN'T KEEP UP WITH THE 3176 01:52:51,760 --> 01:52:52,800 GOING BACK AND FORTH BECAUSE I 3177 01:52:52,800 --> 01:52:54,160 DIDN'T HAVE TRANSPORTATION. 3178 01:52:54,160 --> 01:52:55,400 TRANSPORTATION FOR ACUTE CARE 3179 01:52:55,400 --> 01:52:57,520 WAS NOT MENTIONED AS A PROBLEM. 3180 01:52:57,520 --> 01:52:59,400 BUT FOR ONGOING AND CHRONIC 3181 01:52:59,400 --> 01:53:02,840 CARE, IT WAS A DIFFICULTY. 3182 01:53:02,840 --> 01:53:06,960 AND THEN INSURANCE FOR 3183 01:53:06,960 --> 01:53:08,080 PREVENTIVE OR ONGOING CARE WAS 3184 01:53:08,080 --> 01:53:09,480 ALSO A REASON FOR NOT BEING IN 3185 01:53:09,480 --> 01:53:09,680 CARE. 3186 01:53:09,680 --> 01:53:13,320 AND I HAVE TO MOVE REALLY 3187 01:53:13,320 --> 01:53:15,680 QUICKLY. 3188 01:53:15,680 --> 01:53:16,680 WE HAD THIS IDEA OF PEOPLE 3189 01:53:16,680 --> 01:53:18,960 HAVING A SENSE OF AGENCY, I CAN 3190 01:53:18,960 --> 01:53:21,080 CONTROL IT, IT DOESN'T CONTROL 3191 01:53:21,080 --> 01:53:21,840 ME. 3192 01:53:21,840 --> 01:53:23,560 AND SO PEOPLE WERE MANAGING 3193 01:53:23,560 --> 01:53:24,640 THEIR SYMPTOMS OUTSIDE OF THE 3194 01:53:24,640 --> 01:53:25,600 MEDICAL ENVIRONMENT. 3195 01:53:25,600 --> 01:53:26,800 THEY DIDN'T FEEL THEY NEEDED 3196 01:53:26,800 --> 01:53:28,040 INPATIENT CARE. 3197 01:53:28,040 --> 01:53:29,240 AND YOU CAN LOOK VERY QUICKLY AT 3198 01:53:29,240 --> 01:53:31,040 SOME OF THESE BECAUSE I'VE JUST 3199 01:53:31,040 --> 01:53:32,320 ABOUT RUN OUT OF TIME, AND I 3200 01:53:32,320 --> 01:53:36,760 WANT TO BE A GOOD STEWARD. 3201 01:53:36,760 --> 01:53:45,520 BUT AGENCY WAS IMPORTANT. 3202 01:53:45,520 --> 01:53:46,400 WHY PEOPLE RETURN TO CARE. 3203 01:53:46,400 --> 01:53:48,440 THE BIG EXPLANATION WAS I GOT 3204 01:53:48,440 --> 01:53:48,640 SICK. 3205 01:53:48,640 --> 01:53:51,960 I GOT SICK AND I HAD TO, PEOPLE 3206 01:53:51,960 --> 01:53:53,720 WERE HAVING MORE ED VISITS AND 3207 01:53:53,720 --> 01:53:55,200 THEY FELT THERE WAS A NEED TO 3208 01:53:55,200 --> 01:54:00,240 RE-ENGAGE IN CHRONIC CARE. 3209 01:54:00,240 --> 01:54:02,760 AND THEN -- AS PEOPLE FELT THEY 3210 01:54:02,760 --> 01:54:05,360 WERE GETTING SICKER, THEY WERE 3211 01:54:05,360 --> 01:54:15,840 RE-ENGAGING IN ONGOING CARE. 3212 01:54:16,160 --> 01:54:17,720 MORE EXAMPLES ABOUT THAT IT WAS 3213 01:54:17,720 --> 01:54:18,200 TIME. 3214 01:54:18,200 --> 01:54:19,480 PEOPLE WERE GETTING OLDER, THEY 3215 01:54:19,480 --> 01:54:21,080 WERE SENSING MORE DISEASE IN 3216 01:54:21,080 --> 01:54:24,560 THEIR BODIES. 3217 01:54:24,560 --> 01:54:27,400 THEY HAD ADDITIONAL CHRONIC 3218 01:54:27,400 --> 01:54:28,200 ILLNESSES THAT OVERLAPPED THEIR 3219 01:54:28,200 --> 01:54:29,360 SICKLE CELL DISEASE, OR SOME 3220 01:54:29,360 --> 01:54:31,200 PEOPLE JUST FELT THIS IT HAD 3221 01:54:31,200 --> 01:54:32,480 BEEN A LONG TIME AND THEY FELT 3222 01:54:32,480 --> 01:54:36,000 IT WAS TIME TO GET BACK INTO 3223 01:54:36,000 --> 01:54:43,960 CARE. 3224 01:54:43,960 --> 01:54:45,720 SO WHEN YOU DO QUALITATIVE WORK, 3225 01:54:45,720 --> 01:54:46,360 IT'S ALSO IMPORTANT TO THINK 3226 01:54:46,360 --> 01:54:48,440 ABOUT WHAT YOU DIDN'T HEAR, AND 3227 01:54:48,440 --> 01:54:49,720 SOMETIMES THIS IS RELATED TO THE 3228 01:54:49,720 --> 01:54:50,720 QUESTIONS YOU ASKED, BUT 3229 01:54:50,720 --> 01:54:52,240 SOMETIMES THIS IS ALSO ABOUT 3230 01:54:52,240 --> 01:54:54,640 WHAT IS NOT IMPORTANT TO PEOPLE. 3231 01:54:54,640 --> 01:54:56,720 SO WE DID NOT HEAR ANY COMMENTS 3232 01:54:56,720 --> 01:54:59,440 ABOUT TRADITIONAL PEDS TO ADULT 3233 01:54:59,440 --> 01:55:00,200 TRANSITION. 3234 01:55:00,200 --> 01:55:01,320 THAT WASN'T IDENTIFIED AS A 3235 01:55:01,320 --> 01:55:01,840 PROBLEM. 3236 01:55:01,840 --> 01:55:05,360 ALTHOUGH PEOPLE DID TALK ABOUT 3237 01:55:05,360 --> 01:55:07,200 HOW LIFE CHANGES CO-OCCUR WITH 3238 01:55:07,200 --> 01:55:08,920 ENGAGEMENT AND DISENGAGEMENT. 3239 01:55:08,920 --> 01:55:11,240 THIS IS A PLACE WHERE THE 3240 01:55:11,240 --> 01:55:12,560 ANALYSIS TEAM IS CONTINUING TO 3241 01:55:12,560 --> 01:55:14,280 DEBATE AT THIS POINT. 3242 01:55:14,280 --> 01:55:15,240 INSURANCE OR COSTS WERE NOT 3243 01:55:15,240 --> 01:55:16,320 IDENTIFIED AS A BARRIER FOR 3244 01:55:16,320 --> 01:55:18,000 ACUTE CARE BUT WERE MENTIONED 3245 01:55:18,000 --> 01:55:21,560 FOR OBTAINING ONGOING CARE. 3246 01:55:21,560 --> 01:55:22,680 PEOPLE DID NOT EXPRESS THE NEED 3247 01:55:22,680 --> 01:55:23,680 TO WORK WITH HEALTHCARE 3248 01:55:23,680 --> 01:55:25,160 PROVIDERS FOR DAY TO DAY DISEASE 3249 01:55:25,160 --> 01:55:27,080 CARE MANAGEMENT. 3250 01:55:27,080 --> 01:55:28,480 AND THE USE OF SICKLE CELL 3251 01:55:28,480 --> 01:55:30,960 DISEASE MEDICATIONS AS A 3252 01:55:30,960 --> 01:55:32,600 MODIFYING THERAPY WAS NOT RAISED 3253 01:55:32,600 --> 01:55:37,640 AS AN ISSUE. 3254 01:55:37,640 --> 01:55:38,720 >> 2 MINUTE WARNING. 3255 01:55:38,720 --> 01:55:39,680 >> THANK YOU. 3256 01:55:39,680 --> 01:55:44,320 SO OUR PRELIMINARY CONCLUSIONS. 3257 01:55:44,320 --> 01:55:45,600 MY SICKLE CELL DISEASE IS NOT A 3258 01:55:45,600 --> 01:55:46,040 CONSTANT THING. 3259 01:55:46,040 --> 01:55:47,640 I'M NOT CONSTANTLY SICK SO IT'S 3260 01:55:47,640 --> 01:55:51,480 LIKE I CAN -- I FEEL OKAY, I 3261 01:55:51,480 --> 01:55:52,600 DON'T NEED TO GO TO THE HOSPITAL 3262 01:55:52,600 --> 01:55:53,560 ALL THE TIME BECAUSE I'M NOT 3263 01:55:53,560 --> 01:55:54,120 SICK ALL THE TIME. 3264 01:55:54,120 --> 01:55:57,560 THAT WAS SOMETHING THAT WAS 3265 01:55:57,560 --> 01:55:58,320 VERBALIZED BY MANY OF THESE 3266 01:55:58,320 --> 01:56:01,080 YOUNG ADULTS. 3267 01:56:01,080 --> 01:56:02,040 SO THE ANALYSIS CONTINUES BUT 3268 01:56:02,040 --> 01:56:03,040 THESE ARE OUR PRELIMINARY 3269 01:56:03,040 --> 01:56:04,880 THOUGHTS. 3270 01:56:04,880 --> 01:56:06,320 UNAFFILIATED PARTICIPANTS 3271 01:56:06,320 --> 01:56:07,720 RELAYED THEIR CARE STORIES AS 3272 01:56:07,720 --> 01:56:08,560 EPISODES OF ILLNESS. 3273 01:56:08,560 --> 01:56:10,120 OFTEN OF ACUTE ILLNESS. 3274 01:56:10,120 --> 01:56:12,200 AND THEN INTERVALS OF HEALTH. 3275 01:56:12,200 --> 01:56:15,240 AND THERE WAS AN ABSENCE OF THE 3276 01:56:15,240 --> 01:56:16,760 NEED FOR CARE IN THE WAY THEY 3277 01:56:16,760 --> 01:56:17,880 DESCRIBED THESE STORIES. 3278 01:56:17,880 --> 01:56:18,840 OTHERS THOUGHT THAT THE 3279 01:56:18,840 --> 01:56:19,840 PARTICIPANTS DID VIEW THEIR 3280 01:56:19,840 --> 01:56:21,520 ILLNESS AS CHRONIC, BUT THAT THE 3281 01:56:21,520 --> 01:56:23,480 HEALTHCARE SYSTEM WAS NOT ALWAYS 3282 01:56:23,480 --> 01:56:24,680 HELPFUL, AND THIS LED TO 3283 01:56:24,680 --> 01:56:25,360 INTERRUPTIONS IN CARE. 3284 01:56:25,360 --> 01:56:26,560 AND THIS IS ONE OF THE POINT 3285 01:56:26,560 --> 01:56:28,840 THAT WE'RE WORKING OUT IN OUR 3286 01:56:28,840 --> 01:56:29,560 STORIES. 3287 01:56:29,560 --> 01:56:30,720 PARTICIPANTS DID NOT LINK CARE 3288 01:56:30,720 --> 01:56:33,400 EPISODES TO CREATE LARGER 3289 01:56:33,400 --> 01:56:33,840 NARRATIVES. 3290 01:56:33,840 --> 01:56:37,440 AND WE ARE GOING BACK AND 3291 01:56:37,440 --> 01:56:38,760 EXPLORING, IS THIS EPISODIC 3292 01:56:38,760 --> 01:56:40,000 UNDERSTANDING OF CARE THE WAY WE 3293 01:56:40,000 --> 01:56:42,000 ASK QUESTIONS, OR IS THIS TRULY 3294 01:56:42,000 --> 01:56:43,400 THE WAY INDIVIDUALS THAT ARE 3295 01:56:43,400 --> 01:56:46,000 UNAFFILIATED ARE SEEING THEIR 3296 01:56:46,000 --> 01:56:46,360 CARE? 3297 01:56:46,360 --> 01:56:48,320 BEING IN AND OUT OF CARE WAS 3298 01:56:48,320 --> 01:56:49,960 PRIMARILY OR OFTEN AN ISSUE OF 3299 01:56:49,960 --> 01:56:52,680 CHOICE FOR THESE YOUNG ADULTS. 3300 01:56:52,680 --> 01:56:53,720 INDIVIDUALS DISENGAGED CARE AS A 3301 01:56:53,720 --> 01:56:56,400 RESULT OF LIFE EVENTS, BUT THEY 3302 01:56:56,400 --> 01:56:59,240 DID NOT FEEL THE NECESSITY TO 3303 01:56:59,240 --> 01:57:00,880 RE-ENGAGE IN CARE AFTER THEY 3304 01:57:00,880 --> 01:57:02,400 WERE RE-SETTLED OR AFTER THESE 3305 01:57:02,400 --> 01:57:11,800 CHANGES. 3306 01:57:11,800 --> 01:57:13,120 SO I ACTUALLY HAVE RUN OUT OF 3307 01:57:13,120 --> 01:57:14,880 TIME AND I WANT TO BE A GOOD 3308 01:57:14,880 --> 01:57:15,520 STEWARD HERE. 3309 01:57:15,520 --> 01:57:17,040 YOU CAN READ THESE QUICKLY AND 3310 01:57:17,040 --> 01:57:22,600 LET'S GO ON TO THE NEXT SLIDE. 3311 01:57:22,600 --> 01:57:25,360 SO THESE ARE OUR LIMITATIONS. 3312 01:57:25,360 --> 01:57:26,840 AND THIS IS VERY IMPORTANT TO 3313 01:57:26,840 --> 01:57:28,200 THINK ABOUT AS WE FURTHER 3314 01:57:28,200 --> 01:57:32,000 ANALYZE OUR DATA AND AS PEOPLE 3315 01:57:32,000 --> 01:57:32,960 LOOK AT WHAT WE WERE DOING. 3316 01:57:32,960 --> 01:57:34,480 IMPORTANT TO POINT OUT, WE SPOKE 3317 01:57:34,480 --> 01:57:36,040 ONLY WITH OR PRIMARILY WITH 3318 01:57:36,040 --> 01:57:37,320 YOUNG ADULTS, THAT WAS A 3319 01:57:37,320 --> 01:57:38,840 CONSTRAINT OF THE CONSORTIUM. 3320 01:57:38,840 --> 01:57:40,600 WE'VE NOT DONE OR LOOKED AT 3321 01:57:40,600 --> 01:57:43,680 THESE MATERIALS BY GENDER. 3322 01:57:43,680 --> 01:57:46,480 AND IT WAS VERY INTERESTING IN 3323 01:57:46,480 --> 01:57:48,960 OUR ANALYSIS THAT THE IDEA OF 3324 01:57:48,960 --> 01:57:50,520 HOSPITAL AS A LOCATION FOR ACUTE 3325 01:57:50,520 --> 01:57:56,040 CARE BUT ALSO THAT WAS THE PLACE 3326 01:57:56,040 --> 01:57:57,040 WHERE ONGOING CARE, THAT TERM 3327 01:57:57,040 --> 01:57:58,360 WAS USED IN SORT OF THINKING 3328 01:57:58,360 --> 01:57:59,360 ABOUT GOING TO A CLIPPING OR 3329 01:57:59,360 --> 01:58:04,320 A CLINIC OR ADOCTOR'S OSS 3330 01:58:04,320 --> 01:58:05,120 DOCTOR'S OFFICE. 3331 01:58:05,120 --> 01:58:06,720 THOSE TWO ARE OFTEN CONFLATED 3332 01:58:06,720 --> 01:58:08,680 AND WE OFTEN HAVE TO TEASE THOSE 3333 01:58:08,680 --> 01:58:09,280 OUT. 3334 01:58:09,280 --> 01:58:10,560 I'M GOING TO END HERE AND 3335 01:58:10,560 --> 01:58:12,920 INTRODUCE OUR NEXT SPEAKER. 3336 01:58:12,920 --> 01:58:13,320 DR. JANE HANKINS. 3337 01:58:13,320 --> 01:58:16,240 I WANT TO CORRECT THE FACT THAT 3338 01:58:16,240 --> 01:58:18,760 I ERRED IN SAYING JANE'S NAME 3339 01:58:18,760 --> 01:58:19,360 EARLIER. 3340 01:58:19,360 --> 01:58:20,480 IT IS DR. HANKINS. 3341 01:58:20,480 --> 01:58:22,120 AND SHE'LL TALK TO US ABOUT THE 3342 01:58:22,120 --> 01:58:23,240 MESH STUDY. 3343 01:58:23,240 --> 01:58:26,040 >> THANK YOU, DR. GIBSON. 3344 01:58:26,040 --> 01:58:30,320 YEAH, HAWKINS IS MY COUSIN. 3345 01:58:30,320 --> 01:58:32,040 I'M HANKINS. 3346 01:58:32,040 --> 01:58:35,800 WE'LL DISCUSS THE DETERMINANTS 3347 01:58:35,800 --> 01:58:36,960 OF HYDROXYUREA ADHERENCE IN A 3348 01:58:36,960 --> 01:58:37,640 STUDY CALLED MESH. 3349 01:58:37,640 --> 01:58:38,920 I WANT TO BEGIN BY REVIEWING 3350 01:58:38,920 --> 01:58:40,680 WHAT THE CURRENT DEFINITION OF 3351 01:58:40,680 --> 01:58:41,440 ADHERENCE IS. 3352 01:58:41,440 --> 01:58:44,600 WHICH IS TH THE EXTENT TO WHICHA 3353 01:58:44,600 --> 01:58:46,720 PERSON'S BEHAVIOR OF TAKING A 3354 01:58:46,720 --> 01:58:47,960 MEDICATION AGREES WITH THE 3355 01:58:47,960 --> 01:58:48,720 RECOMMENDATIONS FROM THAT 3356 01:58:48,720 --> 01:58:49,920 HEALTHCARE PROVIDER. 3357 01:58:49,920 --> 01:58:51,480 AND THAT PUTS THE EMPHASIS ON 3358 01:58:51,480 --> 01:58:53,320 THE PATIENT'S AUTONOMY AND THE 3359 01:58:53,320 --> 01:58:54,840 RELATIONSHIP WITH THE PROVIDER, 3360 01:58:54,840 --> 01:58:57,160 AS OPPOSED TO THE DEFINITION OF 3361 01:58:57,160 --> 01:59:01,200 COMPLIANCE, WHICH IS A 3362 01:59:01,200 --> 01:59:04,800 UNIDIRECTIONAL RELATIONSHIP. 3363 01:59:04,800 --> 01:59:08,080 SO IN A LARGE EVALUATION OF 3364 01:59:08,080 --> 01:59:13,680 PATIENTS USING MEDICAID CLAIMS 3365 01:59:13,680 --> 01:59:15,000 DATA, LESS THAN HALF OF THE 3366 01:59:15,000 --> 01:59:17,720 PATIENTS WERE PRESCRIBED 3367 01:59:17,720 --> 01:59:22,520 HYDROXYUREA AND OF THOSE, 3368 01:59:22,520 --> 01:59:23,320 APPROXIMATELY A THIRD HAD 3369 01:59:23,320 --> 01:59:24,240 APPROPRIATE ADHERENCE. 3370 01:59:24,240 --> 01:59:25,520 SO JUST BY LOOKING AT THE LEVEL 3371 01:59:25,520 --> 01:59:27,440 OF BARRIERS HERE, YOU CAN EASILY 3372 01:59:27,440 --> 01:59:28,960 TELL THAT IT'S NOT ONLY PATIENT 3373 01:59:28,960 --> 01:59:31,800 LEVEL BARRIERS THAT IMPAIRS USE 3374 01:59:31,800 --> 01:59:33,160 OF HYDROXYUREA BUT THE SYSTEM 3375 01:59:33,160 --> 01:59:35,200 AND PROVIDER-LEVEL BARRIERS. 3376 01:59:35,200 --> 01:59:38,160 SO HERE WHAT I'M SHOWING YOU IS 3377 01:59:38,160 --> 01:59:39,040 AN INTERVENTION MAPPING MODEL 3378 01:59:39,040 --> 01:59:40,560 WHICH IS AN IMPLEMENTATION 3379 01:59:40,560 --> 01:59:43,160 SCIENCE METHOD TO DEVELOP NEW 3380 01:59:43,160 --> 01:59:43,480 INTERVENTIONS. 3381 01:59:43,480 --> 01:59:44,800 HERE IN THE SHADED AREA, I'M 3382 01:59:44,800 --> 01:59:48,200 SHOWING YOU THE DETERMINANTS OF 3383 01:59:48,200 --> 01:59:48,880 MEDICATION ADHERENCE 3384 01:59:48,880 --> 01:59:50,920 SPECIFICALLY TO HYDROXYUREA THAT 3385 01:59:50,920 --> 01:59:53,080 WE IDENTIFIED THROUGH OUR OWN 3386 01:59:53,080 --> 01:59:53,440 DATA. 3387 01:59:53,440 --> 01:59:55,400 WE DID QUANTITATIVE AND 3388 01:59:55,400 --> 01:59:57,120 QUALITATIVE DATA ANALYSIS AND 3389 01:59:57,120 --> 01:59:58,400 LITERATURE REVIEW, AND WE 3390 01:59:58,400 --> 01:59:59,760 IDENTIFIED THE SALIENT 3391 01:59:59,760 --> 02:00:00,960 DETERMINANTS OF WHAT GETS IN THE 3392 02:00:00,960 --> 02:00:04,240 WAY OR BARRIERS TO TAKING 3393 02:00:04,240 --> 02:00:05,200 HYDROXYUREA IN A SICKLE CELL 3394 02:00:05,200 --> 02:00:05,800 POPULATION. 3395 02:00:05,800 --> 02:00:07,960 SO FOR EXAMPLE, FORGETFULNESS, 3396 02:00:07,960 --> 02:00:09,400 HEALTH EFFICACY, KNOWLEDGE, WHEN 3397 02:00:09,400 --> 02:00:12,040 THEY ARE LOW, THEY IMPAIR THE 3398 02:00:12,040 --> 02:00:12,800 USE AT THE PATIENT LEVEL. 3399 02:00:12,800 --> 02:00:14,560 AT THE PROVIDER LEVEL, WE 3400 02:00:14,560 --> 02:00:16,640 IDENTIFIED SELF-EFFICACY AND 3401 02:00:16,640 --> 02:00:18,480 COGNITIVE KNOWLEDGE OF 3402 02:00:18,480 --> 02:00:21,760 HYDROXYUREA AS BARRIERS FOR 3403 02:00:21,760 --> 02:00:22,840 PROVIDERS. 3404 02:00:22,840 --> 02:00:24,080 SO WE DEVELOPED INTERVENTIONS 3405 02:00:24,080 --> 02:00:25,240 THAT DIRECTLY TARGET THOSE 3406 02:00:25,240 --> 02:00:26,520 DETERMINANTS THAT WE IDENTIFIED 3407 02:00:26,520 --> 02:00:31,680 AS SALIENT IN GETTING IN THE WAY 3408 02:00:31,680 --> 02:00:33,120 OF UTILIZATION AND WE DID THAT 3409 02:00:33,120 --> 02:00:35,000 FOR THE PROVIDER BARRIERS AND 3410 02:00:35,000 --> 02:00:39,800 THE PATIENT BARRIERS. 3411 02:00:39,800 --> 02:00:46,360 SO HERE ARE EXAMPLES OF 3412 02:00:46,360 --> 02:00:49,200 BARRIERS. 3413 02:00:49,200 --> 02:00:50,160 WE PACKAGED ALL THE 3414 02:00:50,160 --> 02:00:52,800 INTERVENTIONS IN A MOBILE HEALTH 3415 02:00:52,800 --> 02:00:54,280 APPLICATION OR AN APP. 3416 02:00:54,280 --> 02:00:56,320 SO ALL THESE INTERVENTIONS WENT 3417 02:00:56,320 --> 02:00:58,160 INTO AN APP FOR THE PATIENTS 3418 02:00:58,160 --> 02:01:00,040 WITH A PATIENT APP CALLED IN 3419 02:01:00,040 --> 02:01:02,320 CHARGE HEALTH AND PROVIDERS' APP 3420 02:01:02,320 --> 02:01:06,360 WAS CALLED HU2 BOX DEVELOPED BY 3421 02:01:06,360 --> 02:01:07,560 DR. SHAH FROM DUKE. 3422 02:01:07,560 --> 02:01:09,960 SO INTERVENTIONS ACT ON 3423 02:01:09,960 --> 02:01:10,840 DETERMINANTS THAT WILL LEAD TO 3424 02:01:10,840 --> 02:01:12,160 CHANGES IN THE PERFORMANCE 3425 02:01:12,160 --> 02:01:13,000 OUTCOMES THAT AT THE END OF THE 3426 02:01:13,000 --> 02:01:15,240 DAY IMPROVE ADHERENCE AND 3427 02:01:15,240 --> 02:01:18,880 IMPROVE QUALITY OF LIFE. 3428 02:01:18,880 --> 02:01:20,800 THESE TWO APPS, THESE TWO 3429 02:01:20,800 --> 02:01:21,920 COMBINED MULTILEVEL 3430 02:01:21,920 --> 02:01:23,360 INTERVENTIONS HATCHED INTO TWO 3431 02:01:23,360 --> 02:01:25,320 DIFFERENT APPS ARE BEING USED 3432 02:01:25,320 --> 02:01:26,720 TOGETHER IN THE STUDY CALLED 3433 02:01:26,720 --> 02:01:28,280 MESH, INTEGRATION OF MOBILE 3434 02:01:28,280 --> 02:01:29,360 HEALTH INTO SICKLE CELL DISEASE 3435 02:01:29,360 --> 02:01:31,320 CARE TO INCREASE HYDROXYUREA 3436 02:01:31,320 --> 02:01:32,760 UTILIZATION AS MENTIONED BY 3437 02:01:32,760 --> 02:01:35,720 DR. GIBSON IN THE PRIOR -- IN 3438 02:01:35,720 --> 02:01:39,760 THE FIRST TALK. 3439 02:01:39,760 --> 02:01:43,360 AND A WE'RE MEASURING ADHERENCEF 3440 02:01:43,360 --> 02:01:45,200 PROPORTION OF DAYS COVERED OR 3441 02:01:45,200 --> 02:01:47,320 PDC WHICH IS A SURROGATE OF 3442 02:01:47,320 --> 02:01:48,440 MEDICATION ADHERENCE. 3443 02:01:48,440 --> 02:01:51,280 IT'S A SURROGATE AND ACCEPTED 3444 02:01:51,280 --> 02:01:54,800 OUTCOME FOR -- END POINT FOR 3445 02:01:54,800 --> 02:01:55,160 ADHERENCE. 3446 02:01:55,160 --> 02:01:56,400 THESE ARE THE SEVEN SITES FROM 3447 02:01:56,400 --> 02:01:58,160 THE SCDIC THAT ARE PARTICIPATING 3448 02:01:58,160 --> 02:02:04,160 IN THE STUDY. 3449 02:02:04,160 --> 02:02:07,240 WE'VE ENROLLED A TOTAL OF 3450 02:02:07,240 --> 02:02:08,720 293 PATIENTS AGE 15 TO 45 NEW TO 3451 02:02:08,720 --> 02:02:11,520 HYDROXYUREA OR ON CHRONIC USE OF 3452 02:02:11,520 --> 02:02:12,800 HYDROXYUREA, AND 89 PROVIDERS 3453 02:02:12,800 --> 02:02:14,680 WHO HAD AT LEAST ONE PATIENT 3454 02:02:14,680 --> 02:02:15,800 WITH SICKLE CELL DISEASE UNDER 3455 02:02:15,800 --> 02:02:18,200 THEIR CARE FOR THE FOLLOWING 12 3456 02:02:18,200 --> 02:02:20,080 MONTHS AFTER ENROLLMENT. 3457 02:02:20,080 --> 02:02:23,240 AND WE WANTED TO LOOK AT WHAT 3458 02:02:23,240 --> 02:02:25,320 WERE THE DRIVERS OF ADHERENCE IN 3459 02:02:25,320 --> 02:02:27,960 THE STUDY TO SEE IF THEY 3460 02:02:27,960 --> 02:02:30,000 CONCURRED WITH THE LITERATURE IN 3461 02:02:30,000 --> 02:02:32,880 OUR PRIOR ANALYSIS AND IF WE 3462 02:02:32,880 --> 02:02:35,800 IDENTIFIED NEW TARGETS OR NEW 3463 02:02:35,800 --> 02:02:37,280 PREDICTORS OF ADHERENCE IN THIS 3464 02:02:37,280 --> 02:02:37,480 GROUP. 3465 02:02:37,480 --> 02:02:39,360 SO WE DID A BASELINE ANALYSIS 3466 02:02:39,360 --> 02:02:41,200 BEFORE THEY STARTED USING THE 3467 02:02:41,200 --> 02:02:42,720 APP, THE PATIENTS, AND FOR 3468 02:02:42,720 --> 02:02:45,560 PATIENT LEVEL PREDICTORS, WE 3469 02:02:45,560 --> 02:02:53,960 USED A NUMB WE ARE OF NUMBER OF, 3470 02:02:53,960 --> 02:02:55,920 COGNITIVE DEPRESSION SYMPTOMS, 3471 02:02:55,920 --> 02:02:57,440 AMONG THE CLINIC LEVEL 3472 02:02:57,440 --> 02:02:58,520 PREDICTORS WE LOOKED AT THE TYPE 3473 02:02:58,520 --> 02:02:59,320 OF PROVIDER IN THE CLINIC, THE 3474 02:02:59,320 --> 02:03:01,640 TYPE OF CLINIC, AND FOR THE 3475 02:03:01,640 --> 02:03:03,600 PROVIDERS, THEIR SELF-EFFICACY, 3476 02:03:03,600 --> 02:03:05,160 THEIR COMFORT IN MANAGING 3477 02:03:05,160 --> 02:03:06,080 HYDROXYUREA AND THEIR KNOWLEDGE 3478 02:03:06,080 --> 02:03:08,360 IN MANAGING HYDROXYUREA. 3479 02:03:08,360 --> 02:03:15,320 OF THE 293 PATIENTS ENROLLED, 3480 02:03:15,320 --> 02:03:16,760 270 PATIENTS HAD ONE HYDROXYUREA 3481 02:03:16,760 --> 02:03:17,720 REFILL IN THE SIX MONTHS PRIOR 3482 02:03:17,720 --> 02:03:19,360 TO THE ENROLLMENT THAT 3483 02:03:19,360 --> 02:03:21,120 CONSTITUTED THE BASELINE PERIOD 3484 02:03:21,120 --> 02:03:22,440 SIX MONTHS BEFORE THE ENROLLMENT 3485 02:03:22,440 --> 02:03:23,200 IN THE STUDY. 3486 02:03:23,200 --> 02:03:25,400 SO WE INCLUDED THOSE 3487 02:03:25,400 --> 02:03:26,320 270 PATIENTS IN THE BASELINE 3488 02:03:26,320 --> 02:03:27,800 ANALYSIS OF PREDICTORS OF 3489 02:03:27,800 --> 02:03:29,560 ADHERENCE TO HYDROXYUREA. 3490 02:03:29,560 --> 02:03:31,400 THE OTHER PATIENTS WERE NEW TO 3491 02:03:31,400 --> 02:03:33,920 THE TREATMENT OR THEY DIDN'T 3492 02:03:33,920 --> 02:03:37,760 HAVE A DOCUMENTED REFILL OF MORE 3493 02:03:37,760 --> 02:03:41,120 THAN SIX MONTHS FROM ENROLLMENT. 3494 02:03:41,120 --> 02:03:44,320 THE BASELINE ADHERENCE FOR THE 3495 02:03:44,320 --> 02:03:45,720 270 PATIENTS IN THIS ANALYSIS IS 3496 02:03:45,720 --> 02:03:46,680 QUITE LOW. 3497 02:03:46,680 --> 02:03:47,880 EVEN LOWER THAN WE WERE 3498 02:03:47,880 --> 02:03:49,200 ANTICIPATING. 3499 02:03:49,200 --> 02:03:50,400 WE THOUGHT IT WAS GOING TO BE 3500 02:03:50,400 --> 02:03:51,880 AROUND 50%, WHICH IS WHAT THE 3501 02:03:51,880 --> 02:03:54,360 LITERATURE SAYS. 3502 02:03:54,360 --> 02:03:55,920 IT'S 42.6%, WITH A LITTLE BIT OF 3503 02:03:55,920 --> 02:03:57,080 VARIABILITY ACROSS THE 3504 02:03:57,080 --> 02:03:59,400 GENOTYPES, BUT NOT MUCH. 3505 02:03:59,400 --> 02:04:01,000 THE FACTORS AT THE PATIENT LEVEL 3506 02:04:01,000 --> 02:04:03,480 THAT WERE ASSOCIATED WITH HIGHER 3507 02:04:03,480 --> 02:04:04,920 ADHERENCE WERE HIGHER 3508 02:04:04,920 --> 02:04:06,760 SELF-REPORTED ADHERENCE, 3509 02:04:06,760 --> 02:04:08,120 PERCEIVED HYDROXYUREA EFFICACY, 3510 02:04:08,120 --> 02:04:12,240 HIGHER MEDICATION SELF-EFFICACY, 3511 02:04:12,240 --> 02:04:16,080 GREATER RELIANCE ON ON OTHERS AD 3512 02:04:16,080 --> 02:04:17,720 MORE COGNITIVE PROBLEMS, 3513 02:04:17,720 --> 02:04:18,680 PROBABLY BECAUSE THEY RECEIVED 3514 02:04:18,680 --> 02:04:19,880 GREATER ASSISTANCE. 3515 02:04:19,880 --> 02:04:20,880 THOSE FACTORS ASSOCIATED WITH 3516 02:04:20,880 --> 02:04:22,520 LOWER ADHERENCE WERE GREATER 3517 02:04:22,520 --> 02:04:24,120 FINANCIAL HARDSHIP, GREATER PAIN 3518 02:04:24,120 --> 02:04:26,760 INTERFERENCE AND POLYPHARMACY. 3519 02:04:26,760 --> 02:04:28,320 SO WHEN A PATIENT WAS USING AT 3520 02:04:28,320 --> 02:04:29,360 LEAST ONE MORE MEDICATION IN 3521 02:04:29,360 --> 02:04:31,080 ADDITION TO HYDROXYUREA. 3522 02:04:31,080 --> 02:04:32,920 THESE TWO GRAPHS SHOW THE NICE 3523 02:04:32,920 --> 02:04:34,600 RELATIONSHIP BETWEEN MEDICATION 3524 02:04:34,600 --> 02:04:36,120 SELF-EFFICACY ON THE LEFT, AND 3525 02:04:36,120 --> 02:04:37,960 THE ADHERENCE. 3526 02:04:37,960 --> 02:04:42,240 SO THE GREATER THE SELF-EFFICACY 3527 02:04:42,240 --> 02:04:43,760 OR THEIR BELIEF THAT THEY CAN 3528 02:04:43,760 --> 02:04:44,880 MANAGE THEIR TREATMENT, THE 3529 02:04:44,880 --> 02:04:46,840 BETTER THE ADHERENCE, AND THE 3530 02:04:46,840 --> 02:04:51,360 MORE -- THE GREATER NUMBER OF 3531 02:04:51,360 --> 02:04:52,560 MEDICATIONS, THE WORSE THEIR 3532 02:04:52,560 --> 02:04:53,240 ADHERENCE. 3533 02:04:53,240 --> 02:04:55,000 AND THE MULTIVARIABLE ANALYSIS, 3534 02:04:55,000 --> 02:04:58,000 THE FACTORS AT THE PATIENT LEVEL 3535 02:04:58,000 --> 02:04:59,320 THAT REMAIN SIGNIFICANT WERE 3536 02:04:59,320 --> 02:05:02,920 AGE, WHICH WAS CLOSE TO 3537 02:05:02,920 --> 02:05:03,720 SIGNIFICANCE, FINANCIAL 3538 02:05:03,720 --> 02:05:04,640 HARDSHIP, SELF-REPORTED 3539 02:05:04,640 --> 02:05:05,800 ADHERENCE, AND TAKING MORE THAN 3540 02:05:05,800 --> 02:05:07,200 ONE MEDICATION IN ADDITION TO 3541 02:05:07,200 --> 02:05:11,000 HYDROXYUREA. 3542 02:05:11,000 --> 02:05:13,440 AT THE CLINIC LEVEL FACTORS, THE 3543 02:05:13,440 --> 02:05:16,840 ONLY FACTOR THAT WAS SIGNIFICANT 3544 02:05:16,840 --> 02:05:18,480 WITH ADHERENCE WAS THE NUMBER OF 3545 02:05:18,480 --> 02:05:21,120 ADVANCED CARE PROVIDERS WHO WERE 3546 02:05:21,120 --> 02:05:22,280 ALSO ENROLLED IN THE STUDY. 3547 02:05:22,280 --> 02:05:23,960 SO THE MORE NURSE PRACTITIONERS 3548 02:05:23,960 --> 02:05:27,320 AND PHYSICIAN ASSISTANTS IN THE 3549 02:05:27,320 --> 02:05:28,560 CLINIC AS PART OF YOUR STAFF, 3550 02:05:28,560 --> 02:05:30,720 THE BETTER YOUR PATIENT'S 3551 02:05:30,720 --> 02:05:31,320 ADHERENCE. 3552 02:05:31,320 --> 02:05:32,960 THE SETTING OF THE CLINIC, URBAN 3553 02:05:32,960 --> 02:05:35,280 OR SUBURBAN, AND THE TYPE OF THE 3554 02:05:35,280 --> 02:05:36,240 CLINIC, ACADEMIC OR COMMUNITY, 3555 02:05:36,240 --> 02:05:37,560 WERE NOT ASSOCIATED WITH 3556 02:05:37,560 --> 02:05:39,320 INCREASED ADHERENCE. 3557 02:05:39,320 --> 02:05:41,120 WE ARE LOOKING CURRENTLY AT THE 3558 02:05:41,120 --> 02:05:42,800 PROVIDER LEVEL FACTORS. 3559 02:05:42,800 --> 02:05:44,360 WE'RE STILL DOING THE ANALYSIS, 3560 02:05:44,360 --> 02:05:47,480 BUT I CAN TELL YOU THAT THERE'S 3561 02:05:47,480 --> 02:05:48,000 VARIABILITY, SIGNIFICANT 3562 02:05:48,000 --> 02:05:51,760 VARIABILITY IN OUR SAMPLE IN 3563 02:05:51,760 --> 02:05:54,280 RELATION TO THE SELF-EFFICACY, 3564 02:05:54,280 --> 02:05:57,120 SO THE PROVIDER IS SAYING THEY 3565 02:05:57,120 --> 02:05:57,800 FEEL CONFIDENT AND THEY BELIEVE 3566 02:05:57,800 --> 02:06:00,720 THEY CAN MANAGE TREATMENT WITH 3567 02:06:00,720 --> 02:06:02,360 HYDROXYUREA IN SICKLE CELL 3568 02:06:02,360 --> 02:06:03,720 DISEASE, AND NOT A WHOLE LOT OF 3569 02:06:03,720 --> 02:06:05,160 DIFFERENCE BETWEEN PHYSICIANS 3570 02:06:05,160 --> 02:06:06,160 AND ADVANCED CARE PROVIDERS. 3571 02:06:06,160 --> 02:06:08,560 AS FAR AS KNOWLEDGE, WE HAD A 3572 02:06:08,560 --> 02:06:09,840 QUIZ ON WHAT WOULD YOU DO IN 3573 02:06:09,840 --> 02:06:13,000 THIS SCENARIO, WOULD YOU HOLD 3574 02:06:13,000 --> 02:06:14,560 THOSE IF THERE'S TOXICITY, HOW 3575 02:06:14,560 --> 02:06:18,160 DO YOU ESCALATE TO THOSE, AND 3576 02:06:18,160 --> 02:06:22,040 THE KNOWLEDGE WAS ALSO VARIED 3577 02:06:22,040 --> 02:06:22,840 BUT IN PHYSICIANS SCORING A 3578 02:06:22,840 --> 02:06:24,880 LITTLE BIT HIGHER THAN ADVANCED 3579 02:06:24,880 --> 02:06:25,680 CARE PROVIDERS. 3580 02:06:25,680 --> 02:06:27,920 A LOT OF THIS STUDY IS STILL 3581 02:06:27,920 --> 02:06:29,360 COMPLETING THAT ANALYSIS. 3582 02:06:29,360 --> 02:06:33,760 IETD LIKEI'D LIKE TO SHARE THE F 3583 02:06:33,760 --> 02:06:34,920 THE FIRST TWO SITES IN THE 3584 02:06:34,920 --> 02:06:37,640 STUDY. 3585 02:06:37,640 --> 02:06:40,840 WE HAD -- IT SO HAPPENED THOSE 3586 02:06:40,840 --> 02:06:42,560 TWO SITES STARTED ENROLLMENT 3587 02:06:42,560 --> 02:06:44,440 THREE MONTHS BEFORE THE COVID-19 3588 02:06:44,440 --> 02:06:45,960 PANDEMIC STARTED. 3589 02:06:45,960 --> 02:06:48,800 SO THE PATIENT WERE INVOLVED AT 3590 02:06:48,800 --> 02:06:49,480 THESE FIRST TWO SITES, 3591 02:06:49,480 --> 02:06:52,440 EXPERIENCED THE STUDY BEFORE THE 3592 02:06:52,440 --> 02:06:53,440 PANDEMIC AND DURING THE INITIAL 3593 02:06:53,440 --> 02:06:56,200 MONTHS OF THE PANDEMIC. 3594 02:06:56,200 --> 02:06:57,880 THE FIRST SITE HAD A LOCKDOWN IN 3595 02:06:57,880 --> 02:06:59,560 RESPONSE TO THE PANDEMIC THAT 3596 02:06:59,560 --> 02:07:01,760 LASTED TWO MONTHS AND WAS FASTER 3597 02:07:01,760 --> 02:07:04,360 TO START USING TELEHEALTH. 3598 02:07:04,360 --> 02:07:05,800 THE OTHER SITE HAD A LONGER 3599 02:07:05,800 --> 02:07:08,040 LOCKDOWN OF NINE MONTHS AND TOOK 3600 02:07:08,040 --> 02:07:09,320 LONGER FOR THE SITE TO BEGIN 3601 02:07:09,320 --> 02:07:10,560 USING TELEHEALTH. 3602 02:07:10,560 --> 02:07:13,520 SO THE SITE THAT HAD THE SHORTER 3603 02:07:13,520 --> 02:07:16,520 LOCKDOWN, THE PATIENT 3604 02:07:16,520 --> 02:07:17,480 EXPERIENCED IMPROVEMENT IN 3605 02:07:17,480 --> 02:07:19,160 ADHERENCE BOTH AT 3 AND 6 MONTHS 3606 02:07:19,160 --> 02:07:20,560 DURING THE STUDY, WHEREAS THE 3607 02:07:20,560 --> 02:07:22,520 SITE WITH THE LONGER LOCKDOWN, 3608 02:07:22,520 --> 02:07:23,480 THE PATIENTS EXPERIENCED A LOSS 3609 02:07:23,480 --> 02:07:26,040 OF ADHERENCE DURING THE STUDY. 3610 02:07:26,040 --> 02:07:28,480 HOWEVER, IN BOTH SITES, IF THE 3611 02:07:28,480 --> 02:07:30,120 PATIENTS USED THE APP, YOU SAW 3612 02:07:30,120 --> 02:07:32,440 AN INCREASE IN ADHERENCE, 40% 3613 02:07:32,440 --> 02:07:33,920 MORE IN RELATION TO THOSE WHO 3614 02:07:33,920 --> 02:07:37,000 DID NOT USE THE APP. 3615 02:07:37,000 --> 02:07:38,960 SO THIS GRAPH ON THE RIGHT 3616 02:07:38,960 --> 02:07:40,720 SHOWED THE CHANGE IN APP USE 3617 02:07:40,720 --> 02:07:42,160 AFTER THE START OF THE PANDEMIC 3618 02:07:42,160 --> 02:07:43,680 AND INCREASE IN THE PDC AND 3619 02:07:43,680 --> 02:07:47,560 THERE IS RELATIONSHIP, GREATER 3620 02:07:47,560 --> 02:07:47,960 AT HEERNS. 3621 02:07:47,960 --> 02:07:49,040 SO THIS IS BEGINNING OF EVIDENCE 3622 02:07:49,040 --> 02:07:50,480 IN OUR STUDY THAT THIS 3623 02:07:50,480 --> 02:07:51,880 INTERVENTION HELPED THE PATIENTS 3624 02:07:51,880 --> 02:07:53,000 IMPROVE ADHERENCE. 3625 02:07:53,000 --> 02:07:58,600 WITH THE QUALITATIVE ANALYSIS, 3626 02:07:58,600 --> 02:08:00,080 AND WE DID SAMPLING OF OUR 3627 02:08:00,080 --> 02:08:01,040 PATIENTS ACCORDING TO THE APP 3628 02:08:01,040 --> 02:08:02,640 USE, SO WE SAMPLED AMONG THOALS 3629 02:08:02,640 --> 02:08:04,880 WHO USE THE APP MORE AND THOSE 3630 02:08:04,880 --> 02:08:05,880 WHO USE THE APP LESS. 3631 02:08:05,880 --> 02:08:08,600 AND IN BOTH OF THOSE TWO SITES, 3632 02:08:08,600 --> 02:08:10,280 WITH THE SHORTER LOCKDOWN AND 3633 02:08:10,280 --> 02:08:13,240 LONGER LOCKDOWN, ALL THE 3634 02:08:13,240 --> 02:08:14,880 PATIENTS INTERVIEWED SAID THE 3635 02:08:14,880 --> 02:08:18,480 APP HELPED THEM TAKE THEIR HEAD 3636 02:08:18,480 --> 02:08:19,160 MEDALLIONCATION, TAKE THEIR 3637 02:08:19,160 --> 02:08:20,360 HYDROXYUREA. 3638 02:08:20,360 --> 02:08:23,560 HOWEVER, AMONG THE LOW USERS OF 3639 02:08:23,560 --> 02:08:25,640 THE APP, THEY DID STATE THAT THE 3640 02:08:25,640 --> 02:08:27,280 LOCKDOWN OR THE CONTACT WITH THE 3641 02:08:27,280 --> 02:08:30,000 PROVIDER WAS A BARRIER FOR THEM 3642 02:08:30,000 --> 02:08:33,760 TO BOTH USE -- TO OBTAIN THEIR 3643 02:08:33,760 --> 02:08:36,400 HYDROXYUREA AND REMAIN ON 3644 02:08:36,400 --> 02:08:36,640 TREATMENT. 3645 02:08:36,640 --> 02:08:37,840 AND MIXED METHOD ANALYSIS 3646 02:08:37,840 --> 02:08:39,080 IDENTIFIED THAT THE USE OF THE 3647 02:08:39,080 --> 02:08:41,360 APP WAS DEPENDENT ON THE 3648 02:08:41,360 --> 02:08:43,520 PATIENT-PROVIDER CONTACT. 3649 02:08:43,520 --> 02:08:44,840 SO IN CONCLUSION, THE 3650 02:08:44,840 --> 02:08:46,320 DETERMINANTS OF HYDROXYUREA 3651 02:08:46,320 --> 02:08:47,520 ADHERENCE OCCUR AT VARIOUS 3652 02:08:47,520 --> 02:08:48,040 LEVELS. 3653 02:08:48,040 --> 02:08:51,120 IT'S NOT ONLY CONSTRAINED TO THE 3654 02:08:51,120 --> 02:08:54,680 PATIENT LEVEL AS A BARRIER, AND 3655 02:08:54,680 --> 02:08:57,240 WE ARE STARTING TO IDENTIFY 3656 02:08:57,240 --> 02:08:58,360 POTENTIAL NEW TARGETS TO BOOST 3657 02:08:58,360 --> 02:09:00,400 ADHERENCE, SO POLYPHARMACY FOR 3658 02:09:00,400 --> 02:09:01,520 EXAMPLE, SO PATIENTS WHO TAKE 3659 02:09:01,520 --> 02:09:02,800 SEVERAL MEDICATIONS AND THIS IS 3660 02:09:02,800 --> 02:09:04,600 GOING TO BECOME MORE AND MORE OF 3661 02:09:04,600 --> 02:09:06,440 A FACTOR NOW THAT WE HAVE MORE 3662 02:09:06,440 --> 02:09:07,640 DISEASE MODIFYING THERAPIES THAT 3663 02:09:07,640 --> 02:09:09,400 WE'RE STARTING TO USE IN 3664 02:09:09,400 --> 02:09:10,640 COMBINATION WITH HYDROXYUREA, 3665 02:09:10,640 --> 02:09:12,600 AND THEN FINANCIAL HARDSHIP. 3666 02:09:12,600 --> 02:09:14,880 SO DEVELOPING INTERVENTIONS 3667 02:09:14,880 --> 02:09:19,040 THAT -- OR STRATEGIES THAT 3668 02:09:19,040 --> 02:09:20,800 TARGET FINANCIAL HARDSHIP AND 3669 02:09:20,800 --> 02:09:24,120 THINK ABOUT WAYS TO MITIGATE IT 3670 02:09:24,120 --> 02:09:26,160 AND IMPROVE ACCESS TO THE DRUG 3671 02:09:26,160 --> 02:09:27,480 IN POLYPHARMACY WILL BE HELPFUL 3672 02:09:27,480 --> 02:09:27,920 GOING FORWARD. 3673 02:09:27,920 --> 02:09:30,680 THEN THE CONTEXTUAL FACTORS WE 3674 02:09:30,680 --> 02:09:31,320 IDENTIFIED, CONTACT WITH 3675 02:09:31,320 --> 02:09:32,520 PROVIDERS WAS VERY IMPORTANT SO 3676 02:09:32,520 --> 02:09:33,200 WHATEVER INTERVENTION YOU GIVE, 3677 02:09:33,200 --> 02:09:35,040 YOU NEED TO BE MINDFUL THAT THE 3678 02:09:35,040 --> 02:09:35,800 CONTACT WITH PROVIDERS IS 3679 02:09:35,800 --> 02:09:38,120 IMPORTANT TO MAINTAIN THE USE OF 3680 02:09:38,120 --> 02:09:41,640 WHATEVER INTERVENTION WE 3681 02:09:41,640 --> 02:09:42,400 INTRODUCE. 3682 02:09:42,400 --> 02:09:45,360 WAND TO CONTAND TO CONTINUE THIE 3683 02:09:45,360 --> 02:09:46,840 STILL DOING A LOT OF ANALYSIS, 3684 02:09:46,840 --> 02:09:47,960 WE STILL HAVE THE OTHER SITES 3685 02:09:47,960 --> 02:09:54,560 STO ANSITES TOANALYZE BUT WE REH 3686 02:09:54,560 --> 02:09:57,160 BRIDGE GRANT TO FINISH ANALYSIS 3687 02:09:57,160 --> 02:09:58,120 TO PREPARE THE SUBMISSION TO 3688 02:09:58,120 --> 02:09:59,040 CONTINUE THE WORK THAT WE 3689 02:09:59,040 --> 02:09:59,280 STARTED. 3690 02:09:59,280 --> 02:10:00,560 SO THANK YOU, AND I'LL TURN IT 3691 02:10:00,560 --> 02:10:03,840 OVER TO DR. GIBSON. 3692 02:10:03,840 --> 02:10:05,000 THANK YOU. 3693 02:10:05,000 --> 02:10:06,800 >> THANK YOU VERY MUCH, 3694 02:10:06,800 --> 02:10:07,480 DR. HANKINS. 3695 02:10:07,480 --> 02:10:10,520 THE NEXT SPEAKER IS PAULA 3696 02:10:10,520 --> 02:10:11,640 TANABE, AND SHE'LL TALK ABOUT 3697 02:10:11,640 --> 02:10:15,240 THE ALIGN STUDY. 3698 02:10:15,240 --> 02:10:15,880 >> EXCELLENT. 3699 02:10:15,880 --> 02:10:18,760 THANK YOU, DR. GIBSON. 3700 02:10:18,760 --> 02:10:20,480 CAN I HAVE MY SLIDES, PLEASE? 3701 02:10:20,480 --> 02:10:20,720 PERFECT. 3702 02:10:20,720 --> 02:10:25,000 SO I WANT TO THANK NHLBI AND THE 3703 02:10:25,000 --> 02:10:25,800 CONSORTIUM FOR THIS OPPORTUNITY 3704 02:10:25,800 --> 02:10:26,840 TO PRESENT THE STATUS OF WHERE 3705 02:10:26,840 --> 02:10:28,600 WE ARE WITH THE ALIGN PROJECT 3706 02:10:28,600 --> 02:10:29,520 THAT WE'VE BEEN REFERRING TO A 3707 02:10:29,520 --> 02:10:31,120 LITTLE BIT. 3708 02:10:31,120 --> 02:10:35,880 AND DR. KING AND I FROM WASH-U 3709 02:10:35,880 --> 02:10:37,920 ARE LEADING THIS PROJECT WITH 3710 02:10:37,920 --> 02:10:39,800 THE ENTIRE CONSORTIUM AND THE 3711 02:10:39,800 --> 02:10:46,560 INVESTIGATORS AT EACH SITE. 3712 02:10:46,560 --> 02:10:49,640 SO ALIGN IS ACTUALLY -- STANDS 3713 02:10:49,640 --> 02:10:51,400 FOR AN INDIVIDUALIZED PAIN PLAN 3714 02:10:51,400 --> 02:10:53,800 WITH PATIENT AND PROVIDER ACCESS 3715 02:10:53,800 --> 02:10:55,360 FOR EMERGENCY DEPARTMENT CARE OF 3716 02:10:55,360 --> 02:10:57,640 SICKLE CELL DISEASE. 3717 02:10:57,640 --> 02:11:00,280 AND I THINK THE PATIENT ACCESS 3718 02:11:00,280 --> 02:11:02,000 IS WHAT IS VERY UNIQUE ABOUT 3719 02:11:02,000 --> 02:11:03,640 THIS PROJECT AND THE FIRST TIME 3720 02:11:03,640 --> 02:11:05,200 ANYTHING LIKE THIS ANYWHERE HAS 3721 02:11:05,200 --> 02:11:10,560 EVER BEEN DONE. 3722 02:11:10,560 --> 02:11:12,400 AND ALL EIGHT CENTERS FROM THE 3723 02:11:12,400 --> 02:11:14,200 CONSORTIUM ARE PARTICIPATING 3724 02:11:14,200 --> 02:11:17,800 HERE AGAIN, SO WE WANT TO THANK 3725 02:11:17,800 --> 02:11:19,640 ALL OF THE EMERGENCY PROVIDER, 3726 02:11:19,640 --> 02:11:20,200 HEMATOLOGISTS, SICKLE CELL 3727 02:11:20,200 --> 02:11:22,240 PROVIDERS, AND REALLY ALL OF THE 3728 02:11:22,240 --> 02:11:25,760 IT EXPERTS AT EACH CENTER AS 3729 02:11:25,760 --> 02:11:26,760 WELL, BECAUSE THIS PROJECT 3730 02:11:26,760 --> 02:11:28,160 REALLY IS CRITICAL TO HAVE ALL 3731 02:11:28,160 --> 02:11:29,960 OF THESE PARTNERS, EVERYBODY 3732 02:11:29,960 --> 02:11:31,560 REALLY HAS AN EQUAL PARTNER IN 3733 02:11:31,560 --> 02:11:33,120 MAKING THIS SUCCESSFUL. 3734 02:11:33,120 --> 02:11:38,240 AT EACH SITE. 3735 02:11:38,240 --> 02:11:39,040 SO THE PURPOSE OF ALIGN IS 3736 02:11:39,040 --> 02:11:41,960 REALLY TO IMPROVE THE CARE OF 3737 02:11:41,960 --> 02:11:42,760 EMERGENCY DEPARTMENT PATIENTS 3738 02:11:42,760 --> 02:11:48,440 WITH BOEs IN VOEs IN THE ED WHH 3739 02:11:48,440 --> 02:11:53,040 USUALLY IS MOST PEOPLE'S NUMBER 3740 02:11:53,040 --> 02:11:53,760 ONE COMPLAINT ABOUT ACCESS TO 3741 02:11:53,760 --> 02:11:55,240 SICKLE CELL DISEASE. 3742 02:11:55,240 --> 02:12:04,880 WE WANT TO -- THE UNIQUE PART IS 3743 02:12:04,880 --> 02:12:05,880 EMBEDDING INDIVIDUALIZED PAIN 3744 02:12:05,880 --> 02:12:07,320 PLANS INTO THE ELECTRONIC HEALTH 3745 02:12:07,320 --> 02:12:08,600 RECORD NOT ONLY FOR ED PROVIDERS 3746 02:12:08,600 --> 02:12:10,680 TO KNOW HOW TO TREAT INDIVIDUAL 3747 02:12:10,680 --> 02:12:12,160 PATIENTS, BUT FOR THE PATIENT TO 3748 02:12:12,160 --> 02:12:16,040 HAVE ACCESS TO THEIR INDIVIDUAL 3749 02:12:16,040 --> 02:12:17,360 PAIN PLAN IN THEIR OWN 3750 02:12:17,360 --> 02:12:19,880 ELECTRONIC HEALTH RECORD. 3751 02:12:19,880 --> 02:12:20,840 ONE OF THE RECOMMENDATIONS, 3752 02:12:20,840 --> 02:12:23,720 THERE ARE 17 RECOMMENDATIONS FOR 3753 02:12:23,720 --> 02:12:25,920 VOE IN THOSE GUIDELINES, AND ONE 3754 02:12:25,920 --> 02:12:27,880 WAS THAT PATIENTS SHOULD HAVE AN 3755 02:12:27,880 --> 02:12:30,160 INDIVIDUALIZED PAIN PLAN, SO FOR 3756 02:12:30,160 --> 02:12:31,640 EXAMPLE, THEY MAY NEED 3757 02:12:31,640 --> 02:12:33,360 10 MILLIGRAMS OF MORPHINE VERSUS 3758 02:12:33,360 --> 02:12:35,480 I MAY NEED 2 MILLIGRAMS OF 3759 02:12:35,480 --> 02:12:35,800 MORPHINE. 3760 02:12:35,800 --> 02:12:39,640 SO OUR PRIMARY OUTCOME FROM THIS 3761 02:12:39,640 --> 02:12:41,080 STUDY IS ACTUALLY THE PATIENT 3762 02:12:41,080 --> 02:12:42,600 SATISFACTION WITH THE ED QUALITY 3763 02:12:42,600 --> 02:12:49,320 OF CARE, WHICH I IS A VALIDATED 3764 02:12:49,320 --> 02:12:49,960 MEASURE. 3765 02:12:49,960 --> 02:12:51,800 WE HAVE MANY SECONDARY OUTCOMES 3766 02:12:51,800 --> 02:12:53,880 BUT ONE IS THE PROVIDER 3767 02:12:53,880 --> 02:12:55,520 CONFIDENCE, THE ED PROVIDER 3768 02:12:55,520 --> 02:12:57,000 CONFIDENCE IN MANAGING PAIN IN 3769 02:12:57,000 --> 02:12:58,160 THE ED. 3770 02:12:58,160 --> 02:13:00,680 OTHER SECONDARY OUTCOMES INCLUDE 3771 02:13:00,680 --> 02:13:03,440 UTILIZATION AND THEN ACTUAL 3772 02:13:03,440 --> 02:13:05,880 ADHERENCE TO THE IPP DURING THE 3773 02:13:05,880 --> 02:13:09,480 ED VISIT. 3774 02:13:09,480 --> 02:13:11,760 THESE OUTCOMES ARE ASSESSED AT 3775 02:13:11,760 --> 02:13:13,520 BASELINE AND THEN AFTER A 3776 02:13:13,520 --> 02:13:14,280 FOLLOW-UP ED VISIT IF THE 3777 02:13:14,280 --> 02:13:19,320 PATIENT HAS ONE. 3778 02:13:19,320 --> 02:13:21,280 PARTICIPANT INCLUSION CRITERIA 3779 02:13:21,280 --> 02:13:23,960 ARE SICKLE CELL DISEASE, AGAIN, 3780 02:13:23,960 --> 02:13:25,560 18 TO 45, SO ONLY ADULTS WHO HAD 3781 02:13:25,560 --> 02:13:28,520 TO HAVE ACCESS TO A SMARTPHONE, 3782 02:13:28,520 --> 02:13:30,040 AND VERY CRITICAL WAS THAT THEY 3783 02:13:30,040 --> 02:13:33,560 HAD TO HAVE ONE ED VISIT IN THE 3784 02:13:33,560 --> 02:13:34,880 PARTICIPATING SITE WITHIN THE 3785 02:13:34,880 --> 02:13:37,040 LAST 90 DAYS FROM ENROLLMENT, 3786 02:13:37,040 --> 02:13:38,920 AND THIS WAS THE VISIT THAT 3787 02:13:38,920 --> 02:13:41,440 PARTICIPANTS WERE ASKED TO RATE 3788 02:13:41,440 --> 02:13:44,280 THEIR BASELINE QUALITY OF CARE 3789 02:13:44,280 --> 02:13:48,920 SO IT WASN'T A BASELINE OF MY 3790 02:13:48,920 --> 02:13:50,320 OVERALL EXPERIENCE IN EMERGENCY 3791 02:13:50,320 --> 02:13:51,400 DEPARTMENTS BUT MY EXPERIENCE AT 3792 02:13:51,400 --> 02:13:53,280 THAT PARTICULAR SITE IN THE LAST 3793 02:13:53,280 --> 02:13:54,160 THREE MONTHS. 3794 02:13:54,160 --> 02:13:56,000 AND THEY ALSO HAD TO BE ENGAGED 3795 02:13:56,000 --> 02:13:57,760 IN CARE, IN OUTPATIENT CARE IN 3796 02:13:57,760 --> 02:13:59,840 THE SICKLE CELL CLINIC SO THAT A 3797 02:13:59,840 --> 02:14:01,720 SICKLE CELL PROVIDER COULD KNOW 3798 02:14:01,720 --> 02:14:03,120 THE PATIENT ENOUGH TO BE 3799 02:14:03,120 --> 02:14:04,560 CONFIDENT TO WRITE AN INDIVIDUAL 3800 02:14:04,560 --> 02:14:07,280 PLAN. 3801 02:14:07,280 --> 02:14:09,680 PROVIDER PARTICIPANTS WERE ANY 3802 02:14:09,680 --> 02:14:10,760 EMERGENCY PROVIDER WHO WORKED IN 3803 02:14:10,760 --> 02:14:15,640 THE STUDY ED, HAD ACCESS TO THE 3804 02:14:15,640 --> 02:14:18,040 EHR ROUTINELY, AND EACH SITE 3805 02:14:18,040 --> 02:14:19,480 DETERMINED REALLY WHO WOULD BE 3806 02:14:19,480 --> 02:14:21,040 THE RIGHT CATEGORY OF PROVIDER 3807 02:14:21,040 --> 02:14:23,080 THAT WOULD PROBABLY BE ORDERING 3808 02:14:23,080 --> 02:14:25,400 THAT FIRST DOSE. 3809 02:14:25,400 --> 02:14:28,240 AND THEN THE INCLUSION CRITERIA, 3810 02:14:28,240 --> 02:14:32,280 THEY ALSO HAD TO AGREE TO 3811 02:14:32,280 --> 02:14:33,600 PARTICIPATE IN FOLLOW-UP 3812 02:14:33,600 --> 02:14:39,520 SURVEYS. 3813 02:14:39,520 --> 02:14:40,840 A FEW PATIENTS WERE EXCLUDED BY 3814 02:14:40,840 --> 02:14:42,160 THE SICKLE CELL SPECIALISTS 3815 02:14:42,160 --> 02:14:43,360 BECAUSE THEY FELT THAT THAT 3816 02:14:43,360 --> 02:14:46,080 PARTICULAR PATIENT SHOULD NOT 3817 02:14:46,080 --> 02:14:47,640 HAVE A PROTOCOL OR SHOULD NOT BE 3818 02:14:47,640 --> 02:14:49,920 ADMINISTERED OPIOIDS IN THE ED. 3819 02:14:49,920 --> 02:14:51,320 AND THAT WAS DETERMINED BY THE 3820 02:14:51,320 --> 02:14:52,560 SICKLE CELL PROVIDER, NOT BY THE 3821 02:14:52,560 --> 02:14:59,240 ED PROVIDER. 3822 02:14:59,240 --> 02:15:00,240 SO THIS IS THE PROTOCOL HERE. 3823 02:15:00,240 --> 02:15:01,720 THESE ARE THE METHODS. 3824 02:15:01,720 --> 02:15:03,640 AND I CAN TELL YOU WHAT IT SAYS 3825 02:15:03,640 --> 02:15:04,200 ON THE LEFT. 3826 02:15:04,200 --> 02:15:06,520 IT LOOKS A LITTLE CUT OFF ON MY 3827 02:15:06,520 --> 02:15:08,480 SLIDE. 3828 02:15:08,480 --> 02:15:09,160 SO FIRST OF ALL PATIENTS HAD TO 3829 02:15:09,160 --> 02:15:11,120 GET ENROLLED AND CONSENTED AND 3830 02:15:11,120 --> 02:15:12,720 BEFORE COVID, IT WAS MOSTLY IN 3831 02:15:12,720 --> 02:15:16,040 THE CLINIC, DURING COVID IT ALSO 3832 02:15:16,040 --> 02:15:16,920 WAS VIA PHONE. 3833 02:15:16,920 --> 02:15:23,600 SO PATIENTS WERE IDENTIFIED. 3834 02:15:23,600 --> 02:15:25,000 THEY WOULD SIGN CONSENT AND THEN 3835 02:15:25,000 --> 02:15:25,880 THE SICKLE CELL PROVIDER WOULD 3836 02:15:25,880 --> 02:15:27,440 WRITE THE IPP FOR THAT PATIENT. 3837 02:15:27,440 --> 02:15:29,160 THEY WOULD DETERMINE WHAT DOSE 3838 02:15:29,160 --> 02:15:33,160 FOR VOE SHOULD BE IF THEY GO TO 3839 02:15:33,160 --> 02:15:35,760 THE EMERGENCY DEPARTMENT. 3840 02:15:35,760 --> 02:15:37,600 AND THEN AFTER THAT WAS WRITTEN, 3841 02:15:37,600 --> 02:15:41,560 THEN THE PATIENT AND PROVIDER 3842 02:15:41,560 --> 02:15:42,560 TALKED ABOUT THE PROTOCOL AND 3843 02:15:42,560 --> 02:15:44,960 THE RESEARCH STAFF MADE SURE 3844 02:15:44,960 --> 02:15:46,920 ALSO THAT THE PATIENT KNEW HOW 3845 02:15:46,920 --> 02:15:48,880 TO ACCESS THE PROTOCOL. 3846 02:15:48,880 --> 02:15:51,200 SO THIS WAS REALLY THE CRITICAL 3847 02:15:51,200 --> 02:15:52,880 PART, AND AT MANY SITES, THE 3848 02:15:52,880 --> 02:15:54,400 RESEARCH STAFF ACTUALLY WORKED 3849 02:15:54,400 --> 02:15:57,560 WITH THE PATIENT TO EITHER SIGN 3850 02:15:57,560 --> 02:16:02,360 THEM UP FOR THEIR ELECTRONIC 3851 02:16:02,360 --> 02:16:04,320 PORTAL OR MAKE SURE THAT THEY 3852 02:16:04,320 --> 02:16:05,760 KNEW HOW -- AND MAKE SURE THEY 3853 02:16:05,760 --> 02:16:07,560 KNEW HOW TO ACCESS IT. 3854 02:16:07,560 --> 02:16:08,760 SO ALL PATIENTS WERE GIVEN A 3855 02:16:08,760 --> 02:16:09,080 WALLET CARD. 3856 02:16:09,080 --> 02:16:10,920 NOW THE WALLET CARD WAS NOT LIKE 3857 02:16:10,920 --> 02:16:12,800 IN THE PAST, WHERE PATIENTS WERE 3858 02:16:12,800 --> 02:16:14,680 MAYBE GIVEN A LETTER THAT THEY 3859 02:16:14,680 --> 02:16:16,600 WOULD GIVE TO THE ED PROVIDER TO 3860 02:16:16,600 --> 02:16:19,240 SAY, HEY, HERE IS MY DOSE. 3861 02:16:19,240 --> 02:16:21,680 THAT JUST HISTORICALLY HAS BEEN 3862 02:16:21,680 --> 02:16:22,880 VERY UNSUCCESSFUL. 3863 02:16:22,880 --> 02:16:27,480 FOR A LOT OF DIFFERENT REASONS. 3864 02:16:27,480 --> 02:16:28,120 PROVIDERS WANT TO SEE SOMETHING 3865 02:16:28,120 --> 02:16:29,680 IN THE EHR TO BE BELIEVABLE. 3866 02:16:29,680 --> 02:16:32,120 SO THE WALLET CARD IS THE 3867 02:16:32,120 --> 02:16:33,960 INSTRUCTIONS FOR THE PATIENT ON 3868 02:16:33,960 --> 02:16:36,080 HOW THEY CAN GO IN TO THEIR 3869 02:16:36,080 --> 02:16:38,360 PATIENT PORTAL ELECTRONIC HEALTH 3870 02:16:38,360 --> 02:16:43,280 RECORD AND FIND THEIR IPP. 3871 02:16:43,280 --> 02:16:45,400 MANY OF THE SITES THAT USE EPIC 3872 02:16:45,400 --> 02:16:46,160 FOR EXAMPLE USE THE 3873 02:16:46,160 --> 02:16:46,800 COMMUNICATIONS TAB SO THE 3874 02:16:46,800 --> 02:16:49,880 PATIENT WOULD SIGN IN TO THEIR 3875 02:16:49,880 --> 02:16:52,560 PORTAL, GO TO COMMUNICATIONS AND 3876 02:16:52,560 --> 02:16:53,960 LOOK FOR A LETTER AND THAT'S 3877 02:16:53,960 --> 02:16:55,480 WHERE THE IPP WAS WRITTEN. 3878 02:16:55,480 --> 02:16:57,360 SO THIS ALLOWED THE PATIENT 3879 02:16:57,360 --> 02:16:58,800 THEN, DURING FUTURE ED VISITS, 3880 02:16:58,800 --> 02:17:01,440 TO PULL THAT UP AND SHOW TO THE 3881 02:17:01,440 --> 02:17:03,480 ED PROVIDER, WHERE IT LOOKS VERY 3882 02:17:03,480 --> 02:17:04,840 REAL BECAUSE IT IS VERY REAL, IT 3883 02:17:04,840 --> 02:17:06,800 IS IN THEIR ELECTRONIC HEALTH 3884 02:17:06,800 --> 02:17:07,240 RECORD. 3885 02:17:07,240 --> 02:17:09,120 AND THIS REALLY GETS AT ONE OF 3886 02:17:09,120 --> 02:17:11,520 THE LONG-TIME BARRIERS FOR 3887 02:17:11,520 --> 02:17:12,960 TREATING PATIENTS WITH SICKLE 3888 02:17:12,960 --> 02:17:14,280 CELL IN THE EMERGENCY 3889 02:17:14,280 --> 02:17:14,760 DEPARTMENT. 3890 02:17:14,760 --> 02:17:17,440 AND THAT IS THAT THEY ARE NOT 3891 02:17:17,440 --> 02:17:18,440 BELIEVED AND THEY'RE JUST 3892 02:17:18,440 --> 02:17:20,080 ASSUMED TO BE SEEKING DRUGS FOR 3893 02:17:20,080 --> 02:17:21,600 ADDICTION VERSUS SEEKING DRUGS 3894 02:17:21,600 --> 02:17:25,880 FOR PAIN, WHICH THEY ARE. 3895 02:17:25,880 --> 02:17:27,120 THEY WERE ALSO GIVEN SOME 3896 02:17:27,120 --> 02:17:29,080 TALKING POINTS ABOUT HOW TO TALK 3897 02:17:29,080 --> 02:17:35,200 WITH THE PROVIDER ABOUT THIS. 3898 02:17:35,200 --> 02:17:38,640 THE ED PROVIDERS ALSO RECEIVED 3899 02:17:38,640 --> 02:17:40,280 EDUCATION ABOUT THE PROTOCOL, 3900 02:17:40,280 --> 02:17:41,040 RECEIVED EDUCATION ABOUT WHERE 3901 02:17:41,040 --> 02:17:42,520 THEY CAN FIND THE PROTOCOL IN 3902 02:17:42,520 --> 02:17:44,760 THE ELECTRONIC HEALTH RECORD 3903 02:17:44,760 --> 02:17:46,320 FROM THEIR VIEW AS WELL. 3904 02:17:46,320 --> 02:17:50,040 SO THEN THIS IS ONE OF THOSE 3905 02:17:50,040 --> 02:17:52,160 REALLY TRICKY PROTOCOLS BECAUSE 3906 02:17:52,160 --> 02:17:53,000 YOU CAN'T PREDICT WHEN PATIENTS 3907 02:17:53,000 --> 02:17:55,000 ARE GOING TO COME IN WITH A VOE. 3908 02:17:55,000 --> 02:17:56,360 SO WE ENROLLED A LOT OF 3909 02:17:56,360 --> 02:17:57,840 PATIENTS, WE OVERENROLL 3910 02:17:57,840 --> 02:17:58,960 PATIENTS, AND THEN WAIT FOR THEM 3911 02:17:58,960 --> 02:18:02,760 TO HAVE AN ED VISIT. 3912 02:18:02,760 --> 02:18:04,040 IN THIS PARTICULAR PROJECT, 3913 02:18:04,040 --> 02:18:05,440 RESEARCH STAFF WOULD MONITOR 3914 02:18:05,440 --> 02:18:07,400 THEN FOR ED VISITS, AND THEN 3915 02:18:07,400 --> 02:18:09,280 AFTER THE PATIENT HAD AN ED 3916 02:18:09,280 --> 02:18:11,040 VISIT, THERE WAS REALLY NO 3917 02:18:11,040 --> 02:18:11,920 INTERVENTION IN THE EMERGENCY 3918 02:18:11,920 --> 02:18:14,760 DEPARTMENT AT ALL. 3919 02:18:14,760 --> 02:18:16,280 AFTER THAT VISIT, THE RESEARCH 3920 02:18:16,280 --> 02:18:17,800 STAFF WOULD SEND THE SAME SURVEY 3921 02:18:17,800 --> 02:18:21,440 OUT ABOUT THEIR QUALITY OF CARE 3922 02:18:21,440 --> 02:18:22,600 WITHIN 96 HOURS ABOUT THAT 3923 02:18:22,600 --> 02:18:23,960 VISIT, AND THEN THE PROVIDER WHO 3924 02:18:23,960 --> 02:18:25,280 TOOK CARE OF THEM, IF THEY WERE 3925 02:18:25,280 --> 02:18:26,600 ENROLLED AS WELL, WOULD ALSO GET 3926 02:18:26,600 --> 02:18:28,240 A SURVEY AND THEY WOULD COMPLETE 3927 02:18:28,240 --> 02:18:29,600 AN EMAIL SURVEY BECAUSE THE 3928 02:18:29,600 --> 02:18:32,200 PROVIDERS WANTED EMAILS. 3929 02:18:32,200 --> 02:18:34,640 THE INDIVIDUALS WITH SICKLE CELL 3930 02:18:34,640 --> 02:18:35,240 WANTED TEXT. 3931 02:18:35,240 --> 02:18:37,480 SO THEY BOTH WERE ASKED TO 3932 02:18:37,480 --> 02:18:38,880 COMPLETE A FOLLOW-UP SURVEY 3933 02:18:38,880 --> 02:18:46,000 AFTER AN ED VISIT. 3934 02:18:46,000 --> 02:18:48,200 SO WHERE ARE WE TODAY, WHICH IS 3935 02:18:48,200 --> 02:18:49,520 PRETTY MUCH WHAT I'M REALLY 3936 02:18:49,520 --> 02:18:50,320 REPORTING ON TODAY. 3937 02:18:50,320 --> 02:18:52,160 THE TARGET WAS, WE WERE HOPING 3938 02:18:52,160 --> 02:18:55,360 EACH SITE WOULD ENROLL ABOUT 40 3939 02:18:55,360 --> 02:18:56,760 PATIENTS AND GET 20 UNIQUE 3940 02:18:56,760 --> 02:18:57,760 PATIENTS COMPLETING THE 3941 02:18:57,760 --> 02:18:58,880 FOLLOW-UP ED SURVEY. 3942 02:18:58,880 --> 02:19:02,160 SO OUR TARGET WAS 160 UNIQUE 3943 02:19:02,160 --> 02:19:03,440 PATIENTS WITH FOLLOW-UP SURVEYS, 3944 02:19:03,440 --> 02:19:05,600 AND I COULDN'T BE HAPPIER TO SAY 3945 02:19:05,600 --> 02:19:07,480 THAT I THINK LAST WEEK WE HIT 3946 02:19:07,480 --> 02:19:10,680 IT, AND SO WE DO HAVE 160 UNIQUE 3947 02:19:10,680 --> 02:19:12,720 PATIENT FOLLOW-UP SURVEYS WHICH 3948 02:19:12,720 --> 02:19:14,680 IS PHENOMENAL, GIVEN ALL OF THE 3949 02:19:14,680 --> 02:19:16,760 COVID CRAZINESS. 3950 02:19:16,760 --> 02:19:18,360 BECAUSE IT DID DEFINITELY KEEP 3951 02:19:18,360 --> 02:19:20,080 SOME PATIENT AWAIL FROM THE 3952 02:19:20,080 --> 02:19:21,320 EMERGENCY DEPARTMENT FOR QUITE A 3953 02:19:21,320 --> 02:19:24,040 PERIOD OF TIME. 3954 02:19:24,040 --> 02:19:26,680 SO COMPLETING THE STUDY WAS A 3955 02:19:26,680 --> 02:19:28,320 CHALLENGE, AND REALLY ALL OF THE 3956 02:19:28,320 --> 02:19:29,760 SITES AND ALL OF THE 3957 02:19:29,760 --> 02:19:31,240 COORDINATORS AT EACH SITE, ALL 3958 02:19:31,240 --> 02:19:33,160 THE INVESTIGATORS AT EACH SITE 3959 02:19:33,160 --> 02:19:35,640 WERE SO COMMITTED AND SO 3960 02:19:35,640 --> 02:19:38,280 DEDICATED TO COMPLETING THIS, 3961 02:19:38,280 --> 02:19:39,840 EVEN AFTER THIS INITIAL GRANT 3962 02:19:39,840 --> 02:19:42,160 FUNDING ENDED, THAT IT REALLY IS 3963 02:19:42,160 --> 02:19:43,600 ONLY BECAUSE OF THE DEDICATION 3964 02:19:43,600 --> 02:19:46,080 OF REALLY EVERYONE, EVERYBODY 3965 02:19:46,080 --> 02:19:47,480 INVOLVED AT EACH SITE THAT WE 3966 02:19:47,480 --> 02:19:49,280 HIT THIS NUMBER. 3967 02:19:49,280 --> 02:19:51,080 I'M STILL AMAZED THAT WE HIT THE 3968 02:19:51,080 --> 02:19:51,680 NUMBER. 3969 02:19:51,680 --> 02:19:52,600 I COULDN'T BE HAPPIER. 3970 02:19:52,600 --> 02:19:54,920 SO WE DID ENROLL 280 PATIENTS 3971 02:19:54,920 --> 02:19:57,440 THAT SIGNED CONSENT. 3972 02:19:57,440 --> 02:20:00,400 THE PRIMARY OUTCOME IS BASED ON 3973 02:20:00,400 --> 02:20:01,560 ONLY ONE VISIT FROM THAT 3974 02:20:01,560 --> 02:20:04,800 PATIENT, SO THE FIRST ED VISIT 3975 02:20:04,800 --> 02:20:05,480 THEY WOULD HAVE. 3976 02:20:05,480 --> 02:20:06,920 HOWEVER, IF THEY HAD MORE THAN 3977 02:20:06,920 --> 02:20:08,560 ONE VISIT, THEY WERE SENT 3978 02:20:08,560 --> 02:20:08,880 SURVEYS. 3979 02:20:08,880 --> 02:20:10,640 I THINK UP TO ABOUT FIVE IN A 3980 02:20:10,640 --> 02:20:11,400 PARTICULAR MONTH. 3981 02:20:11,400 --> 02:20:12,640 WHERE THEY COULD ACTUALLY 3982 02:20:12,640 --> 02:20:15,920 COMPLETE THE SURVEY MORE THAN 3983 02:20:15,920 --> 02:20:16,440 THAT. 3984 02:20:16,440 --> 02:20:21,720 SO WE DO HAVE 329 POST-ED 3985 02:20:21,720 --> 02:20:23,840 SURVEYS BUT 160 WITH UNIQUE 3986 02:20:23,840 --> 02:20:24,280 PATIENTS. 3987 02:20:24,280 --> 02:20:35,160 WE TRAINED 881 ED PROVIDERS, 40R 3988 02:20:37,480 --> 02:20:39,480 SURVEYS, AND 243 COMPLETED POST 3989 02:20:39,480 --> 02:20:40,000 ED SURVEYS. 3990 02:20:40,000 --> 02:20:42,360 WHAT WAS REALLY EXCITING WAS 3991 02:20:42,360 --> 02:20:47,400 149 -- WE HAD ALMOST 150, OF 149 3992 02:20:47,400 --> 02:20:49,400 PAIRED SURVEY, SO WE HAVE A 3993 02:20:49,400 --> 02:20:51,560 RESPONSE FROM THE PATIENT AND 3994 02:20:51,560 --> 02:20:52,720 RESPONSE FROM THE PROVIDER ON 3995 02:20:52,720 --> 02:20:54,080 THE SAME PARTICULAR VISIT. 3996 02:20:54,080 --> 02:20:55,760 I DO THINK SOME OF THIS RESPONSE 3997 02:20:55,760 --> 02:20:57,400 RATE FROM THE PATIENTS IN 3998 02:20:57,400 --> 02:20:59,040 COMPLETING ALL THE SURVEYS 3999 02:20:59,040 --> 02:21:00,240 AFTERWARDS AND FROM THE 4000 02:21:00,240 --> 02:21:01,720 PROVIDERS WAS REALLY, AGAIN, 4001 02:21:01,720 --> 02:21:05,880 JUST DUE TO THE ENTHUSIASM FOR 4002 02:21:05,880 --> 02:21:06,960 THIS PROJECT FOR THE IMPORTANCE 4003 02:21:06,960 --> 02:21:08,840 OF THIS PROJECT TO BOTH PATIENT 4004 02:21:08,840 --> 02:21:13,000 AND TO THE ED PROVIDERS AS WELL. 4005 02:21:13,000 --> 02:21:14,320 THEY DID NOT HAVE TO ANSWER 4006 02:21:14,320 --> 02:21:16,400 THESE SURVEY, AND THEY REALLY 4007 02:21:16,400 --> 02:21:19,440 DID. 4008 02:21:19,440 --> 02:21:22,360 SO I THINK THAT IS REALLY ALL OF 4009 02:21:22,360 --> 02:21:23,640 WHAT WE HAVE RIGHT TODAY. 4010 02:21:23,640 --> 02:21:26,480 WHERE WE ARE RIGHT NOW IS WE 4011 02:21:26,480 --> 02:21:28,400 ACTUALLY HAVE ANALYZED THE 4012 02:21:28,400 --> 02:21:29,360 BASELINE SURVEY FOR BOTH THE 4013 02:21:29,360 --> 02:21:30,480 PATIENTS AND THE PROVIDERS, AND 4014 02:21:30,480 --> 02:21:34,240 WE DO HAVE THAT DATA. 4015 02:21:34,240 --> 02:21:35,320 WE HAVE STARTED TO LOOK AT THAT 4016 02:21:35,320 --> 02:21:35,960 DATA. 4017 02:21:35,960 --> 02:21:37,320 IT'S INTERESTING DATA, AND SO 4018 02:21:37,320 --> 02:21:39,960 WE'RE NOT COMFORTABLE TODAY 4019 02:21:39,960 --> 02:21:42,160 SHARING IT, BUT WE ARE GETTING 4020 02:21:42,160 --> 02:21:44,840 READY, WE DID SUBMIT AN ABSTRACT 4021 02:21:44,840 --> 02:21:46,880 TO ASH WITH IT AND WE'LL NEED TO 4022 02:21:46,880 --> 02:21:48,400 REALLY TALK ABOUT IT WITH THE 4023 02:21:48,400 --> 02:21:49,440 CONSORTIUM INVESTIGATORS FIRST, 4024 02:21:49,440 --> 02:21:50,800 I THINK, BEFORE WE GO FORWARD, 4025 02:21:50,800 --> 02:21:52,960 AND THEN WE'RE PLANNING MANY 4026 02:21:52,960 --> 02:21:57,640 PAPERS, THERE'S LOTS OF 4027 02:21:57,640 --> 02:21:58,560 IMPLEMENTATION AROUND THIS 4028 02:21:58,560 --> 02:22:00,000 PROJECT, AND THEN WE'LL HAVE 4029 02:22:00,000 --> 02:22:04,280 HEALTHCARE UTILIZATION OU OUTCO, 4030 02:22:04,280 --> 02:22:06,120 AND THE PRIMARY OUTCOMES AS 4031 02:22:06,120 --> 02:22:06,480 WELL. 4032 02:22:06,480 --> 02:22:09,320 SO WE'RE REALLY VERY EXCITED 4033 02:22:09,320 --> 02:22:10,880 ABOUT COMPLETING THIS, AND 4034 02:22:10,880 --> 02:22:12,880 GETTING IT WRAPPED UP TO GET THE 4035 02:22:12,880 --> 02:22:13,960 DATABASE LOCKED UP AS WELL, 4036 02:22:13,960 --> 02:22:15,280 BECAUSE THE SITES DO STILL NEED 4037 02:22:15,280 --> 02:22:18,240 TO HAVE SOME TIME TO FINISH TO 4038 02:22:18,240 --> 02:22:20,920 ENTER SOME OF THEIR HEALTHCARE 4039 02:22:20,920 --> 02:22:22,880 UTILIZATION DATA, WHICH IS 4040 02:22:22,880 --> 02:22:24,400 MEASURED 12 MONTHS PRIOR TO 4041 02:22:24,400 --> 02:22:27,000 ENROLLMENT AND 12 MONTHS AFTER 4042 02:22:27,000 --> 02:22:29,080 ENROLLMENT, IF WE HAVE 12 MONTHS 4043 02:22:29,080 --> 02:22:34,000 AFTER THE PATIENT-SIGNED 4044 02:22:34,000 --> 02:22:34,240 CONSENT. 4045 02:22:34,240 --> 02:22:35,240 THAT'S IT. 4046 02:22:35,240 --> 02:22:35,880 SO THANK YOU, EVERYBODY, FOR 4047 02:22:35,880 --> 02:22:36,880 THIS OPPORTUNITY TO PRESENT 4048 02:22:36,880 --> 02:22:37,080 TODAY. 4049 02:22:37,080 --> 02:22:39,920 >> THANK YOU, DR. TANABE. 4050 02:22:39,920 --> 02:22:44,760 OUR NEXT SPEAKER IS DR. PRIYA 4051 02:22:44,760 --> 02:22:45,000 PARIKH. 4052 02:22:45,000 --> 02:22:46,440 >> THANK YOU, DR. GIBSON. 4053 02:22:46,440 --> 02:22:47,160 GOOD MORNING. 4054 02:22:47,160 --> 02:22:49,200 I'M A 30-YEAR PEDIATRIC 4055 02:22:49,200 --> 02:22:51,040 HEMATOLOGY ONCOLOGY FELLOW HERE 4056 02:22:51,040 --> 02:22:53,560 AT UCSF CHILDREN'S HOSPITAL. 4057 02:22:53,560 --> 02:22:54,920 TODAY I'M REALLY THRILLED TO 4058 02:22:54,920 --> 02:22:55,600 HAVE THE OPPORTUNITY TO SPEAK ON 4059 02:22:55,600 --> 02:22:57,320 THIS PROJECT ON BEHALF OF MYSELF 4060 02:22:57,320 --> 02:22:59,600 AND MY COCOLLABORATORS. 4061 02:22:59,600 --> 02:23:01,520 HERE IS OUR STUDY ENTITLED THE 4062 02:23:01,520 --> 02:23:03,680 EVALUATION OF THE IMPACT OF 4063 02:23:03,680 --> 02:23:04,760 COVID-19 ON INDIVIDUALS WITH 4064 02:23:04,760 --> 02:23:07,000 SICKLE CELL DISEASE IN THE U.S. 4065 02:23:07,000 --> 02:23:12,600 USING PATIENT-REPORTED OUTCOMES. 4066 02:23:12,600 --> 02:23:14,760 AS WE KNOW, COVID-19 PANDEMIC 4067 02:23:14,760 --> 02:23:18,080 HAS CREATED A LOT OF 4068 02:23:18,080 --> 02:23:18,840 LONG-STANDING EFFECTS ON 4069 02:23:18,840 --> 02:23:19,880 PERSONAL HEALTH, SOCIAL HEALTH 4070 02:23:19,880 --> 02:23:20,960 AND MORE GENERALLY THE WORLD IN 4071 02:23:20,960 --> 02:23:23,680 WHICH WE LIVE IN. 4072 02:23:23,680 --> 02:23:25,280 WE NE HEALTH INEQUITIES HAVE 4073 02:23:25,280 --> 02:23:27,200 ALSO BEEN BROUGHT TO LIGHT IN 4074 02:23:27,200 --> 02:23:28,800 PHYSICAL HEALTH MEASURES AS WELL 4075 02:23:28,800 --> 02:23:31,280 AS MENTAL HEALTH, RESILIENCY AND 4076 02:23:31,280 --> 02:23:32,640 DISCRIMINATION ALL IN THE 4077 02:23:32,640 --> 02:23:34,360 SETTING OF INCREASED SYSTEMIC 4078 02:23:34,360 --> 02:23:34,840 RACISM. 4079 02:23:34,840 --> 02:23:36,800 THOSE WHO HAVE HAD LONG-STANDING 4080 02:23:36,800 --> 02:23:37,800 EFFECTS WITH RACISM AND HEALTH 4081 02:23:37,800 --> 02:23:38,880 INEQUITIES WITHIN OUR HEALTHCARE 4082 02:23:38,880 --> 02:23:40,040 SYSTEM REALLY ARE OUR PATIENTS 4083 02:23:40,040 --> 02:23:42,720 AND FAMILIES WITH SICKLE CELL 4084 02:23:42,720 --> 02:23:43,400 DISEASE. 4085 02:23:43,400 --> 02:23:44,280 WONDERFUL WORK HAS BEEN DONE SO 4086 02:23:44,280 --> 02:23:46,120 FAR TO UNDERSTAND THE CLINICAL 4087 02:23:46,120 --> 02:23:47,880 IMPACT OF COVID-19 FOR OUR 4088 02:23:47,880 --> 02:23:50,000 PATIENTS, INCLUDING A LEDGE 4089 02:23:50,000 --> 02:23:52,080 INDUSTRY THROUGH DR. PINTO'S 4090 02:23:52,080 --> 02:23:54,480 WORK ENTITLED SECURE-SCD. 4091 02:23:54,480 --> 02:23:55,760 WHAT HASN'T BEEN YET WELL 4092 02:23:55,760 --> 02:23:57,040 DESCRIBED, THOUGH, IS HOW OUR 4093 02:23:57,040 --> 02:23:59,000 PATIENTS HAVE DESCRIBED THEIR 4094 02:23:59,000 --> 02:24:00,120 EXPERIENCES IN THEIR OWN WORDS 4095 02:24:00,120 --> 02:24:02,680 DURING THE COVID-19 PANDEMIC. 4096 02:24:02,680 --> 02:24:05,400 SO OUR STUDY SPECIFICALLY AIMS 4097 02:24:05,400 --> 02:24:07,600 TO ADD IN A PATIENT VOICE DURING 4098 02:24:07,600 --> 02:24:08,560 PATIENT-REPORTED OUTCOMES 4099 02:24:08,560 --> 02:24:10,160 INCLUDING MEASURES OF EMOTIONAL 4100 02:24:10,160 --> 02:24:11,360 DISTRESS, PAIN AND PSYCHOSOCIAL 4101 02:24:11,360 --> 02:24:16,160 WELL-BEING. 4102 02:24:16,160 --> 02:24:17,440 IN ADDITION TO UNDERSTANDING 4103 02:24:17,440 --> 02:24:18,280 CLINICAL PRESENTATION OF 4104 02:24:18,280 --> 02:24:21,520 COVID-19 FOR A COVID-POSITIVE 4105 02:24:21,520 --> 02:24:23,560 PATIENT COHORT, OUR FOCUS AS I 4106 02:24:23,560 --> 02:24:24,240 MENTIONED IS REALLY 4107 02:24:24,240 --> 02:24:25,560 UNDERSTANDING THE 4108 02:24:25,560 --> 02:24:26,320 PATIENT-REPORTED PAIN 4109 02:24:26,320 --> 02:24:27,520 EXPERIENCE, THE PSYCHOSOCIAL 4110 02:24:27,520 --> 02:24:29,960 WELL-BEING AND GENERAL HEALTH 4111 02:24:29,960 --> 02:24:31,160 AFFECTED THROUGHOUT THE COVID-19 4112 02:24:31,160 --> 02:24:31,640 PANDEMIC. 4113 02:24:31,640 --> 02:24:33,000 I THINK THIS WILL REALLY PROVIDE 4114 02:24:33,000 --> 02:24:34,640 A GAP IN THE LITERATURE THAT 4115 02:24:34,640 --> 02:24:37,000 CURRENTLY EXISTS AND SORT OF 4116 02:24:37,000 --> 02:24:39,960 REPRESENTING THE PATIENT VOICE 4117 02:24:39,960 --> 02:24:41,040 THROUGHOUT THIS REALLY 4118 02:24:41,040 --> 02:24:42,040 UNPRECEDENTED TIME WE'RE ALL 4119 02:24:42,040 --> 02:24:45,320 FACING IN OUR TIME. 4120 02:24:45,320 --> 02:24:47,080 WE HYPOTHESIZE ADOLESCENTS AND 4121 02:24:47,080 --> 02:24:47,880 ADULTS WITH SICKLE CELL DISEASE 4122 02:24:47,880 --> 02:24:49,880 WILL EXPERIENCE A MORE NEGATIVE 4123 02:24:49,880 --> 02:24:50,840 PSYCHOSOCIAL IMPACT DURING THE 4124 02:24:50,840 --> 02:24:52,520 PANDEMIC IN THESE VERY SPECIFIC 4125 02:24:52,520 --> 02:24:54,320 MEASURES OF EMOTIONAL DISTRESS, 4126 02:24:54,320 --> 02:24:55,720 SOCIAL FUNCTIONING, AND OVERALL 4127 02:24:55,720 --> 02:25:02,000 HEALTH. 4128 02:25:02,000 --> 02:25:03,680 IN TERMS OF METHODS FOR OUR 4129 02:25:03,680 --> 02:25:05,160 STUDY, I KNOW THERE'S A LOT OF 4130 02:25:05,160 --> 02:25:06,160 WORDS ON THE SLIDE BUT I WANT TO 4131 02:25:06,160 --> 02:25:06,920 HIGHLIGHT A COUPLE POINT. 4132 02:25:06,920 --> 02:25:07,760 YOU'VE HAD THE OPPORTUNITY TO 4133 02:25:07,760 --> 02:25:10,120 HEAR A LITTLE BIT ABOUT THE 4134 02:25:10,120 --> 02:25:12,320 SCDIC AND OVERALL CONSORTIUM 4135 02:25:12,320 --> 02:25:14,280 WORK THROUGH DR. GIBSON'S 4136 02:25:14,280 --> 02:25:15,440 WONDERFUL OVERVIEW AND THE OTHER 4137 02:25:15,440 --> 02:25:16,720 PROJECTS THAT HAVE BEEN ONGOING. 4138 02:25:16,720 --> 02:25:18,360 OUR FOCUS IN THIS STUDY IS TO 4139 02:25:18,360 --> 02:25:20,120 USE EXISTING PATIENT FOLLOW-UP 4140 02:25:20,120 --> 02:25:21,480 SURVEY DATA IN ADDITION TO THE 4141 02:25:21,480 --> 02:25:23,520 CREATION OF A COVID-19-SPECIFIC 4142 02:25:23,520 --> 02:25:25,160 PATIENT SURVEY THROUGHOUT THE 4143 02:25:25,160 --> 02:25:26,520 CONSORTIUM THAT WAS IMPLEMENTED 4144 02:25:26,520 --> 02:25:27,080 IN 2020. 4145 02:25:27,080 --> 02:25:28,600 THE TIMELINE OF THAT SURVEY 4146 02:25:28,600 --> 02:25:30,720 DISTRIBUTION AND ANALYSIS WAS 4147 02:25:30,720 --> 02:25:33,280 SPECIFICALLY SEPTEMBER 2020 TO 4148 02:25:33,280 --> 02:25:35,360 JUNE 2021, SO SHORTLY AFTER THE 4149 02:25:35,360 --> 02:25:37,960 EMERGENCE OF THE PANDEMIC. 4150 02:25:37,960 --> 02:25:40,920 THE POPULATION INCLUDING OUR 4151 02:25:40,920 --> 02:25:42,400 INCLUSION CRITERIA IS ADOLESCENT 4152 02:25:42,400 --> 02:25:44,600 AND YOUNG ADULT POPULATIONS 4153 02:25:44,600 --> 02:25:46,080 ENROLLED IN THE SCDIC REGISTRY 4154 02:25:46,080 --> 02:25:47,440 WHO ARE PRIMARILY WITHIN THE 4155 02:25:47,440 --> 02:25:50,520 AGES OF 15 AND 45, AND MORE 4156 02:25:50,520 --> 02:25:51,840 SPECIFICALLY THOSE WHO COMPLETED 4157 02:25:51,840 --> 02:25:54,160 BOTH THE COVID-19 SURVEY AS WELL 4158 02:25:54,160 --> 02:25:55,600 AS AN ANNUAL FOLLOW-UP SURVEY, 4159 02:25:55,600 --> 02:25:57,120 WITHIN A MONTH OR SO OF EACH 4160 02:25:57,120 --> 02:25:57,680 OTHER. 4161 02:25:57,680 --> 02:26:01,120 IN TERMS OF OUR DESIGN FOR THE 4162 02:26:01,120 --> 02:26:04,280 STUDY, WE ARE DOING THIS 4163 02:26:04,280 --> 02:26:07,760 RETROSPECTIVELY, IT RETROSPECTIE 4164 02:26:07,760 --> 02:26:10,000 AND DESCRIPTIVE AND SURVEY-BASED 4165 02:26:10,000 --> 02:26:10,960 INCLUDING PATIENT-REPORTED 4166 02:26:10,960 --> 02:26:12,400 CLINICAL OUTCOMES AND MEASURES. 4167 02:26:12,400 --> 02:26:13,400 I WANTED TO POINT ATTENTION TO 4168 02:26:13,400 --> 02:26:16,200 THE SURVEYS WE UTILIZED WHICH 4169 02:26:16,200 --> 02:26:18,960 INCLUDE THE NOVEL CORONAVIRUS 4170 02:26:18,960 --> 02:26:20,440 AND COVID-19 PATIENT IMPACT 4171 02:26:20,440 --> 02:26:21,400 SURVEY WILL WISCONSIN I'LL SPEAK 4172 02:26:21,400 --> 02:26:23,440 A LITTLE BIT MORE ABOUT, THE 4173 02:26:23,440 --> 02:26:27,000 PATIENT FOLLOW-UP SURVEY AND WE 4174 02:26:27,000 --> 02:26:29,960 ALSO INCLUDED AN INSTITUTIONAL 4175 02:26:29,960 --> 02:26:32,040 CLIMATE SURVEY FOR EACH SITE 4176 02:26:32,040 --> 02:26:33,520 THAT PARTICIPATED IN THE STUDY 4177 02:26:33,520 --> 02:26:34,520 JUST TO GET A MORE GENERAL SENSE 4178 02:26:34,520 --> 02:26:37,920 OF TIME LIME OF COVID-19 IMPACT 4179 02:26:37,920 --> 02:26:42,880 INCLUDING VACCINATION, ET 4180 02:26:42,880 --> 02:26:43,120 CETERA. 4181 02:26:43,120 --> 02:26:44,560 TO TOUCH A LITTLE BIT MORE 4182 02:26:44,560 --> 02:26:45,920 SPECIFICALLY ON THE PATIENT 4183 02:26:45,920 --> 02:26:47,440 IMPACT SURVEY, IT WAS DEVELOPED 4184 02:26:47,440 --> 02:26:50,400 IN 2020 AND INCLUDES A SET OF 20 4185 02:26:50,400 --> 02:26:51,000 QUESTIONS. 4186 02:26:51,000 --> 02:26:52,760 OVERALL VARIABLES IN THIS SURVEY 4187 02:26:52,760 --> 02:26:54,240 INCLUDED OUTCOMES SURROUNDING 4188 02:26:54,240 --> 02:26:55,960 CLINICAL MEASURES, HEALTHCARE 4189 02:26:55,960 --> 02:26:57,840 ACCESS AND UTILIZATION, AS WELL 4190 02:26:57,840 --> 02:27:00,000 AS PSYCHOSOCIAL IMPACT THROUGH A 4191 02:27:00,000 --> 02:27:03,120 COMBINATION OF CHECK BOX 4192 02:27:03,120 --> 02:27:04,200 QUESTIONS AND SCALES. 4193 02:27:04,200 --> 02:27:05,200 THOSE PSYCHOSOCIAL IMPACT 4194 02:27:05,200 --> 02:27:07,120 QUESTIONS WERE REALLY IN BIG 4195 02:27:07,120 --> 02:27:09,280 BUCKETS OF SOCIAL BEHAVIORS, 4196 02:27:09,280 --> 02:27:10,360 RELATIONSHIPS, MOOD, STRESS, 4197 02:27:10,360 --> 02:27:17,800 SLEEP, FINANCIAL BURDEN. 4198 02:27:17,800 --> 02:27:20,080 FROM OUR SCDIC FOLLOW-UP SURVEY, 4199 02:27:20,080 --> 02:27:21,400 WE ALSO IDENTIFIED AS A GROUP 4200 02:27:21,400 --> 02:27:25,320 THE FOLLOWING VARIABLES AND 4201 02:27:25,320 --> 02:27:29,160 PLANS USING OUTCOMES AND -- THEY 4202 02:27:29,160 --> 02:27:30,840 WERE DRAWN FROM THE HEALTH 4203 02:27:30,840 --> 02:27:32,160 MEASURES COLLECTION THAT ARE 4204 02:27:32,160 --> 02:27:34,040 REALLY CONSISTING OF MEASUREMENT 4205 02:27:34,040 --> 02:27:35,600 SYSTEMS LOOKING AT PHYSICAL, 4206 02:27:35,600 --> 02:27:39,400 MENTAL, SOCIAL HEALTH, SYMPTOMS, 4207 02:27:39,400 --> 02:27:40,080 LIFE SATISFACTION. 4208 02:27:40,080 --> 02:27:42,280 THESE INCLUDED THE MAJOR BUCKETS 4209 02:27:42,280 --> 02:27:44,240 OF PROMISE, PATIENT-REPORTED 4210 02:27:44,240 --> 02:27:46,680 OUTCOMES MEASUREMENT INFORMATION 4211 02:27:46,680 --> 02:27:47,320 SYSTEM, THE ADULT SICKLE CELL 4212 02:27:47,320 --> 02:27:49,760 QUALITY OF LIFE MEASUREMENT 4213 02:27:49,760 --> 02:27:54,320 INFORMATION SYSTEM OR ASCQ-ME AS 4214 02:27:54,320 --> 02:27:56,600 WELL AS THE TOOLBOX. 4215 02:27:56,600 --> 02:27:57,880 THESE ARE SORT OF VALIDATED 4216 02:27:57,880 --> 02:27:59,640 TOOLS THAT HAVE FOUND TO BE 4217 02:27:59,640 --> 02:28:01,040 SOUND IN ALL OF THESE DIFFERENT 4218 02:28:01,040 --> 02:28:03,040 GENERAL BUCKETS OF PHYSICAL 4219 02:28:03,040 --> 02:28:05,160 HEALTH, PSYCHOSOCIAL AND 4220 02:28:05,160 --> 02:28:08,440 EMOTIONAL MENTAL HEALTH AS WELL. 4221 02:28:08,440 --> 02:28:10,240 SO DETAILED HERE ARE SORT OF THE 4222 02:28:10,240 --> 02:28:11,440 OVERALL VARIABLES THAT WE HAD 4223 02:28:11,440 --> 02:28:15,840 INCLUDED AND PLAN TO INCLUDE IN 4224 02:28:15,840 --> 02:28:19,560 OUR OVERALL ANALYSIS, INCLUDING 4225 02:28:19,560 --> 02:28:22,320 ASCQ-ME, PROMISE, AS WELL AS 4226 02:28:22,320 --> 02:28:24,200 EXPERIENCES OF DISCRIMINATION, 4227 02:28:24,200 --> 02:28:25,760 WITH OVERALL LOOKING AT OUTCOMES 4228 02:28:25,760 --> 02:28:31,320 OF PROMIS EMOTIONAL DISTRESS, 4229 02:28:31,320 --> 02:28:35,960 DEPRESSION, ANXIETY, AS WELL AS 4230 02:28:35,960 --> 02:28:38,600 PROMIS GLOBAL HEALTH. 4231 02:28:38,600 --> 02:28:39,920 I'M HAPPY TO SHARE A COUPLE 4232 02:28:39,920 --> 02:28:41,200 INITIAL RESULTS HERE THAT ARE 4233 02:28:41,200 --> 02:28:42,880 MORE DESCRIPTIVE IN NATURE. 4234 02:28:42,880 --> 02:28:45,520 IN TOTAL, FOR OUR PROJECT, WE 4235 02:28:45,520 --> 02:28:48,800 HAD AN ANALYSIS GROUP OF 4236 02:28:48,800 --> 02:28:50,600 653 PATIENTS, AND JUST AS A 4237 02:28:50,600 --> 02:28:54,000 REMINDER, THOSE ARE THOSE WHO 4238 02:28:54,000 --> 02:28:54,840 FINISHED BOTH COVID-19 AS WELL 4239 02:28:54,840 --> 02:28:55,920 AS WHAT WAS THE FOLLOW-UP 4240 02:28:55,920 --> 02:28:56,800 SURVEY. 4241 02:28:56,800 --> 02:28:59,400 THIS INCLUDES BREAKDOWN BY SCDIC 4242 02:28:59,400 --> 02:29:01,600 SITES WHICH WE SEE A NICE 4243 02:29:01,600 --> 02:29:03,800 REPRESENTATION OF ALL OF OUR 4244 02:29:03,800 --> 02:29:04,400 EIGHT SITES, AS WELL AS 4245 02:29:04,400 --> 02:29:07,840 DEMOGRAPHICS BY AGE, SEX AND 4246 02:29:07,840 --> 02:29:09,400 ETHNICITY. 4247 02:29:09,400 --> 02:29:11,160 IN TERMS OF ACCESS TO CARE, WE 4248 02:29:11,160 --> 02:29:12,640 FOUND THAT THE MAJORITY OF OUR 4249 02:29:12,640 --> 02:29:14,880 PATIENTS STILL HAD IN-PERSON 4250 02:29:14,880 --> 02:29:16,240 VISIT DURING THIS TIME PERIOD. 4251 02:29:16,240 --> 02:29:17,880 BUT AS I THINK WE ALL KNOW, 4252 02:29:17,880 --> 02:29:20,960 VIDEO AND PHONE VISITS WERE ALSO 4253 02:29:20,960 --> 02:29:21,920 HAPPENING AND SORT OF EMERGING 4254 02:29:21,920 --> 02:29:23,000 AND BECOMING MORE COMMON 4255 02:29:23,000 --> 02:29:24,520 THROUGHOUT THE PANDEMIC. 4256 02:29:24,520 --> 02:29:25,960 INTERESTINGLY, SOCIAL BEHAVIORS 4257 02:29:25,960 --> 02:29:28,960 WERE VARIED, AS WELL AS SORT OF 4258 02:29:28,960 --> 02:29:29,560 RELATIONSHIPS AND HOW THAT 4259 02:29:29,560 --> 02:29:32,160 CHANGED THROUGHOUT THE PAN 4260 02:29:32,160 --> 02:29:32,760 DEPUBLIC. 4261 02:29:32,760 --> 02:29:36,840 MOST IMPACTED IN TERMS OF SOCIAL 4262 02:29:36,840 --> 02:29:38,000 MEASURES WERE THINGS LIKE GOING 4263 02:29:38,000 --> 02:29:39,560 OUT TO EAT AT RESTAURANTS, MOOD, 4264 02:29:39,560 --> 02:29:43,920 SLEEP, STRESS AND SPECIFICALLY 4265 02:29:43,920 --> 02:29:44,680 FINANCIAL STRESS. 4266 02:29:44,680 --> 02:29:54,480 WE SAW IN GENERAL EITHER STABLE 4267 02:29:54,480 --> 02:29:55,760 SOCIAL -- AS A RESULT OF THESE 4268 02:29:55,760 --> 02:29:56,200 IMPACTS. 4269 02:29:56,200 --> 02:30:01,240 HERE IS JUST A BRIEF OVERVIEW OF 4270 02:30:01,240 --> 02:30:02,600 OUR COVID POSITIVE PATIENT 4271 02:30:02,600 --> 02:30:02,960 COHORTS. 4272 02:30:02,960 --> 02:30:04,960 PATIENTS WHO HAD SELF-IDENTIFIED 4273 02:30:04,960 --> 02:30:06,280 AS HAVING COVID INFORECAST AND 4274 02:30:06,280 --> 02:30:11,760 WAINFECTION,WANTED TO UNDERSTANF 4275 02:30:11,760 --> 02:30:14,360 CLINICAL EXPERIENCES THEY ALL 4276 02:30:14,360 --> 02:30:15,520 HAD, SO I WOULD SAY IN GENERAL, 4277 02:30:15,520 --> 02:30:17,240 MOST OF OUR YOUNG ADULT 4278 02:30:17,240 --> 02:30:18,440 ADOLESCENT PATIENTS REALLY 4279 02:30:18,440 --> 02:30:22,360 EXPERIENCED SYMPTOMS OF FEVERS, 4280 02:30:22,360 --> 02:30:23,680 CHILLS, COUGH, SHORTNESS OF 4281 02:30:23,680 --> 02:30:25,520 BREATH, PAIN, FATIGUE, MYALGIA, 4282 02:30:25,520 --> 02:30:27,240 HEADACHE AND LOST OF TASTE AND 4283 02:30:27,240 --> 02:30:28,760 SMELL AND THOSE WERE SORT OF THE 4284 02:30:28,760 --> 02:30:31,800 MOST OVERALL COMMONLY REPORTED 4285 02:30:31,800 --> 02:30:42,000 SYMPTOMS. 4286 02:30:44,000 --> 02:30:45,800 I WANTED TO JUST GIVE A GENERAL 4287 02:30:45,800 --> 02:30:46,760 SENSE OF WHERE WE INTEND TO GO 4288 02:30:46,760 --> 02:30:48,200 FOLLOWING SOME OF THIS INITIAL 4289 02:30:48,200 --> 02:30:49,040 DESCRIPTIVE WORK THAT'S BEEN 4290 02:30:49,040 --> 02:30:49,480 DONE. 4291 02:30:49,480 --> 02:30:53,160 WE REALLY PLAN TO USE UNIVARIATE 4292 02:30:53,160 --> 02:30:55,600 AND MULTIVARIATE ANALYSES USING 4293 02:30:55,600 --> 02:30:57,480 THESE VALIDATED PRO FRAME WORKS 4294 02:30:57,480 --> 02:30:58,680 AS PREVIOUSLY DISCUSSED AND IN 4295 02:30:58,680 --> 02:31:00,240 PREVIOUS SLIDES, AS WELL AS THE 4296 02:31:00,240 --> 02:31:02,640 ADDITION OF THE COVID-19 4297 02:31:02,640 --> 02:31:06,040 VARIABLE AND UNDERSTANDING HOW 4298 02:31:06,040 --> 02:31:07,160 BOTH PATIENTS OVERALL THROUGHOUT 4299 02:31:07,160 --> 02:31:09,360 THE PANDEMIC HAVE SORT OF 4300 02:31:09,360 --> 02:31:10,760 EXPERIENCED THEIR SICKLE CELL 4301 02:31:10,760 --> 02:31:13,760 DISEASE AND HOW THAT MAY HAVE 4302 02:31:13,760 --> 02:31:16,320 CHANGED IF THEY TRULY HAD 4303 02:31:16,320 --> 02:31:18,840 COVID-POSITIVE DISEASE. 4304 02:31:18,840 --> 02:31:23,240 WE PLAN TO UNDERSTAND IN OUR 4305 02:31:23,240 --> 02:31:24,400 RESULTS WITHIN THE CONTEXT OF 4306 02:31:24,400 --> 02:31:25,560 WHAT I THINK IS REALLY IMPORTANT 4307 02:31:25,560 --> 02:31:31,680 TO HIGHLIGHT HERE, WHICH IS A -- 4308 02:31:31,680 --> 02:31:33,840 THAT GO HAND IN HAND WITH A 4309 02:31:33,840 --> 02:31:37,040 PANDEMIC AND I THINK WE DON'T 4310 02:31:37,040 --> 02:31:38,120 HAVE SO MUCH TIME TO TALK ABOUT 4311 02:31:38,120 --> 02:31:39,560 THAT TODAY, BUT I THINK WE'RE 4312 02:31:39,560 --> 02:31:43,960 ALL VER VERY AWARE THAT SYSTEMIC 4313 02:31:43,960 --> 02:31:46,480 RACISM AND DISCRIMINATION SAW AN 4314 02:31:46,480 --> 02:31:48,080 UPTICK DURING THE PANDEMIC AND 4315 02:31:48,080 --> 02:31:49,520 ESPECIALLY FOR OUR PATIENTS. 4316 02:31:49,520 --> 02:31:51,200 SO THAT HAS BEEN WELL DESCRIBED 4317 02:31:51,200 --> 02:31:54,320 AND A WELL-KNOWN I PHENOMENON TT 4318 02:31:54,320 --> 02:31:55,480 HAS BEEN HAPPENING THROUGHOUT 4319 02:31:55,480 --> 02:31:56,120 THIS PANDEMIC. 4320 02:31:56,120 --> 02:31:57,680 I WILL POINT OUT A COUPLE 4321 02:31:57,680 --> 02:31:58,680 LIMITATION HERE. 4322 02:31:58,680 --> 02:31:59,800 I THINK SAMPLE SIZE IS ALWAYS 4323 02:31:59,800 --> 02:32:01,320 SOMETHING TO THINK ABOUT, THE 4324 02:32:01,320 --> 02:32:02,880 NATURE OF PATIENT-REPORTED 4325 02:32:02,880 --> 02:32:03,960 OUTCOMES, OUR GOAL AND INTENTION 4326 02:32:03,960 --> 02:32:05,480 IS REALLY TO ADD IN THE PATIENT 4327 02:32:05,480 --> 02:32:08,120 VOICE, BUT WE DID NOT VERIFY 4328 02:32:08,120 --> 02:32:10,520 SOME OF THIS DATA THROUGH 4329 02:32:10,520 --> 02:32:11,720 MEDICAL RECORDS, INSURANCE 4330 02:32:11,720 --> 02:32:13,960 CLAIMS, ET CETERA. 4331 02:32:13,960 --> 02:32:16,960 RECONCILING DISKREP K DISCREPANS 4332 02:32:16,960 --> 02:32:20,200 SOMETHING WE'VE BEEN WORKING ON 4333 02:32:20,200 --> 02:32:21,640 BETWEEN OUR COVID-19 IMPACT 4334 02:32:21,640 --> 02:32:23,560 SURVEY AND THE FOLLOW-UP PLAN IN 4335 02:32:23,560 --> 02:32:24,920 PLACE WITH SCDIC. 4336 02:32:24,920 --> 02:32:27,080 AND THE OTHER THING IS THE 4337 02:32:27,080 --> 02:32:28,960 VARYING CHANGES TO THE COVID-19 4338 02:32:28,960 --> 02:32:30,640 CLIMATE EVEN WITHIN THE STUDY 4339 02:32:30,640 --> 02:32:31,040 PERIOD. 4340 02:32:31,040 --> 02:32:32,520 AS MOST OF US ARE VERY FAMILIAR, 4341 02:32:32,520 --> 02:32:34,680 THE PANDEMIC HAS NOT BEEN A 4342 02:32:34,680 --> 02:32:38,480 LINEAR PROCESS, AND 4343 02:32:38,480 --> 02:32:39,360 VACCINATIONS, DIFFERENT 4344 02:32:39,360 --> 02:32:40,480 EXPERIENCE AS WELL AS 4345 02:32:40,480 --> 02:32:41,680 GEOPOLITICAL CLIMATES HAVE 4346 02:32:41,680 --> 02:32:42,600 VARIED A LOT. 4347 02:32:42,600 --> 02:32:46,360 AND JUST TO WRAP UP, NEXT SLIDE, 4348 02:32:46,360 --> 02:32:51,240 BRIEFLY WANTED TO ACKNOWLEDGE 4349 02:32:51,240 --> 02:32:54,280 HERE MY COCOLLABORATORS, MY 4350 02:32:54,280 --> 02:32:57,800 PRIMARY MENTOR, DR. MARCIA 4351 02:32:57,800 --> 02:32:58,760 TREADWELL AND ALL OUR PATIENTS 4352 02:32:58,760 --> 02:33:00,720 AND THOSE AFFECTED BY THE 4353 02:33:00,720 --> 02:33:02,080 COVID-19 PANDEMIC. 4354 02:33:02,080 --> 02:33:04,840 I WILL WRAP UP THERE AND HAND IT 4355 02:33:04,840 --> 02:33:05,920 BACK OFF TO DR. GIBSON. 4356 02:33:05,920 --> 02:33:06,560 THANK YOU SO MUCH. 4357 02:33:06,560 --> 02:33:09,400 >> THANK YOU VERY MUCH, 4358 02:33:09,400 --> 02:33:09,680 DR. PARIKH. 4359 02:33:09,680 --> 02:33:10,680 I THINK YOU HAVE A COUPLE 4360 02:33:10,680 --> 02:33:11,560 QUESTIONS IN THE Q & A, IF YOU 4361 02:33:11,560 --> 02:33:12,840 CAN CHECK AND FOLLOW UP WITH 4362 02:33:12,840 --> 02:33:13,040 THEM. 4363 02:33:13,040 --> 02:33:13,320 THANK YOU. 4364 02:33:13,320 --> 02:33:19,080 OUR NEXT SPEAKER IS 4365 02:33:19,080 --> 02:33:20,680 DR. STEPHANIE IBEMERE. 4366 02:33:20,680 --> 02:33:22,360 >> GOOD AFTERNOON. 4367 02:33:22,360 --> 02:33:26,400 I'M GOING TO SHARE MY SCREEN. 4368 02:33:26,400 --> 02:33:28,040 HELLO AND GOOD DAY TO YOU ALL. 4369 02:33:28,040 --> 02:33:29,880 I HOPE YOU CAN HEAR ME CLEARLY. 4370 02:33:29,880 --> 02:33:32,400 MY NAME IS DR. STEPHANIE 4371 02:33:32,400 --> 02:33:32,840 IBEMERE. 4372 02:33:32,840 --> 02:33:34,760 I OOM ASSISTANT PROFESSOR IN THE 4373 02:33:34,760 --> 02:33:35,840 DUKE UNIVERSITY SCHOOL OF 4374 02:33:35,840 --> 02:33:36,080 NURSING. 4375 02:33:36,080 --> 02:33:40,320 I'D LINING TO I'D LIKE TO STARTY 4376 02:33:40,320 --> 02:33:41,280 THANKING THE NHLBI FOR THE 4377 02:33:41,280 --> 02:33:41,960 OPPORTUNITY TO PRESENT HERE 4378 02:33:41,960 --> 02:33:42,520 TODAY. 4379 02:33:42,520 --> 02:33:44,160 I'D LIKE TO ALSO SAY A SPECIAL 4380 02:33:44,160 --> 02:33:47,200 THANK YOU TO THIS MAGNIFICENT 4381 02:33:47,200 --> 02:33:48,160 CO-AUTHOR TEAM THAT YOU'RE 4382 02:33:48,160 --> 02:33:49,560 SEEING HERE FOR THEIR ENTHUSIASM 4383 02:33:49,560 --> 02:33:51,120 FOR THIS STUDY, AND OF COURSE 4384 02:33:51,120 --> 02:33:53,080 FOR THEIR SUPPORT AS WE WORK TO 4385 02:33:53,080 --> 02:33:55,840 GET THIS MANUSCRIPT PUBLISHED. 4386 02:33:55,840 --> 02:33:57,360 SO ON BEHALF OF THIS WONDERFUL 4387 02:33:57,360 --> 02:33:58,760 TEAM, I'M HAPPY TO PRESENT OUR 4388 02:33:58,760 --> 02:34:01,960 STUDY TO YOU ALL TODAY ENTITLED 4389 02:34:01,960 --> 02:34:05,640 HIGH BODY MASS INDEX IN ADULTS 4390 02:34:05,640 --> 02:34:06,960 WITH SICKLE CELL DISEASE, A 4391 02:34:06,960 --> 02:34:07,920 REPORT FROM THE SICKLE CELL 4392 02:34:07,920 --> 02:34:09,800 DISEASE IMPLEMENTATION 4393 02:34:09,800 --> 02:34:11,760 CONSORTIUM REGISTRY. 4394 02:34:11,760 --> 02:34:16,960 SO THESE ARE DISCLOSURES IN AND 4395 02:34:16,960 --> 02:34:17,720 FUNDING STATEMENTS. 4396 02:34:17,720 --> 02:34:20,120 AGAIN THANK YOU TO THE NHLBI FOR 4397 02:34:20,120 --> 02:34:21,720 YOUR SUPPORT OF THE CONSORTIUM. 4398 02:34:21,720 --> 02:34:23,120 SO BODY MASS INDEX IS INCREASING 4399 02:34:23,120 --> 02:34:24,520 EACH YEAR IN THE UNITED STATES 4400 02:34:24,520 --> 02:34:25,720 AND ACROSS ALL POPULATIONS AND 4401 02:34:25,720 --> 02:34:27,800 AS WE KNOW, COVID-19, I DON'T 4402 02:34:27,800 --> 02:34:29,840 KNOW ABOUT YOU GUYS, WAS NOT 4403 02:34:29,840 --> 02:34:32,120 KIND TO ME AND HAS NOT BEEN KIND 4404 02:34:32,120 --> 02:34:33,120 TO THE GENERAL POPULATION IN 4405 02:34:33,120 --> 02:34:35,000 TERMS OF WEIGHT GAIN. 4406 02:34:35,000 --> 02:34:39,080 THIS BODY MASS INCREASE IS 4407 02:34:39,080 --> 02:34:39,840 PARTICULARLY EVIDENT IN THE 4408 02:34:39,840 --> 02:34:41,680 AFRICAN AMERICAN POPULATION 4409 02:34:41,680 --> 02:34:44,760 WHERE APPROXIMATELY 76.1% OF 4410 02:34:44,760 --> 02:34:46,920 THOSE IN THIS POPULATION ARE 4411 02:34:46,920 --> 02:34:51,080 CLASSIFIED AS BEING OVERWEIGHT 4412 02:34:51,080 --> 02:34:53,440 OR OBESE COMPARED TO 69.8% IN 4413 02:34:53,440 --> 02:34:57,040 THE WHITE POPULATION. 4414 02:34:57,040 --> 02:34:58,000 SICKLE CELL DISEASE IS A 4415 02:34:58,000 --> 02:34:59,320 CONDITION WE KNOW PRO DOMINANTLY 4416 02:34:59,320 --> 02:35:09,040 APREDOMINANTLYAFFECTS THOSE WITT 4417 02:35:09,040 --> 02:35:10,560 STATUS GIVEN DEMANDS ASSOCIATED 4418 02:35:10,560 --> 02:35:11,880 WITH THE DISEASE PROCESS. 4419 02:35:11,880 --> 02:35:13,360 HOWEVER, EXTANT LITERATURE IS 4420 02:35:13,360 --> 02:35:16,000 SHOWING THAT BMI, BODY MASS 4421 02:35:16,000 --> 02:35:18,640 INDEX, ARE INCREASING IN THE 4422 02:35:18,640 --> 02:35:20,120 PEDIATRIC SICKLE CELL DISEASE 4423 02:35:20,120 --> 02:35:22,080 POPULATION. 4424 02:35:22,080 --> 02:35:23,360 HOWEVER, DATA ABOUT THE ADULT 4425 02:35:23,360 --> 02:35:25,120 SICKLE CELL DISEASE POPULATION 4426 02:35:25,120 --> 02:35:27,440 HAVE BEEN CONFLICTING OVERALL 4427 02:35:27,440 --> 02:35:29,360 AND THIS IS DUE TO VARYING 4428 02:35:29,360 --> 02:35:31,880 METHODS OF CATEGORIZING BODY 4429 02:35:31,880 --> 02:35:35,680 MASS INDEX, THE USE OF SMALL 4430 02:35:35,680 --> 02:35:36,560 SAMPLE SIZES IN THESE STUDIES 4431 02:35:36,560 --> 02:35:38,520 AND THE USE OF DATA FROM SINGLE 4432 02:35:38,520 --> 02:35:43,720 INSTITUTIONS THAT RESULTS IN 4433 02:35:43,720 --> 02:35:45,440 INCONCLUSIVE RESULTS. 4434 02:35:45,440 --> 02:35:49,200 SO GIVEN THE INCREASING BODY 4435 02:35:49,200 --> 02:35:54,120 MASS INDEX IN THE POPULATION AND 4436 02:35:54,120 --> 02:35:55,480 OUR LIMITED AVAILABLE EVIDENCE 4437 02:35:55,480 --> 02:35:57,680 ON BMI STATUS FOR THOSE THAT ARE 4438 02:35:57,680 --> 02:35:59,560 ADULTS WITH SICKLE CELL DISEASE, 4439 02:35:59,560 --> 02:36:01,680 THE PRIMARY OBJECTIVE OF THIS 4440 02:36:01,680 --> 02:36:04,400 PARTICULAR STUDY WAS TO 4441 02:36:04,400 --> 02:36:05,520 DETERMINE THE PREVALENCE OF 4442 02:36:05,520 --> 02:36:07,720 OVERWEIGHT AND OBESE BMI STATUS 4443 02:36:07,720 --> 02:36:11,040 AMONG ADULTS WITH SICKLE CELL 4444 02:36:11,040 --> 02:36:14,000 DISEASE AGED 20 TO 45 4445 02:36:14,000 --> 02:36:14,880 PARTICIPATING IN THE SICKLE CELL 4446 02:36:14,880 --> 02:36:16,000 DISEASE IMPLEMENTATION 4447 02:36:16,000 --> 02:36:20,360 CONSORTIUM REGISTRY. 4448 02:36:20,360 --> 02:36:22,600 OUR SECOND DI OBJECTIVE WAS TO 4449 02:36:22,600 --> 02:36:26,080 IDENTIFY ASSOCIATIONS BETWEEN 4450 02:36:26,080 --> 02:36:26,760 SOCIODEMOGRAPHIC SICKLE CELL 4451 02:36:26,760 --> 02:36:28,840 DISEASE AND NON-SICKLE CELL 4452 02:36:28,840 --> 02:36:31,840 DISEASE RELATED CLINICAL 4453 02:36:31,840 --> 02:36:32,200 CHARACTERISTICS. 4454 02:36:32,200 --> 02:36:34,280 HYDROXYUREA USE, AND HIGH BODY 4455 02:36:34,280 --> 02:36:35,800 MASS INDEX IN ADULTS WITH SICKLE 4456 02:36:35,800 --> 02:36:41,040 CELL DISEASE. 4457 02:36:41,040 --> 02:36:43,160 SO THIS STUDY AS I MENTIONED WAS 4458 02:36:43,160 --> 02:36:45,160 CONDUCTED UTILIZING DATA FROM 4459 02:36:45,160 --> 02:36:48,760 THE SCDIC REGISTRY. 4460 02:36:48,760 --> 02:36:51,000 THE CONSORTIUM CONSISTS OF EIGHT 4461 02:36:51,000 --> 02:36:52,200 COMPREHENSIVE SICKLE CELL 4462 02:36:52,200 --> 02:36:53,520 CENTERS, AS DR. GIBSON HAD 4463 02:36:53,520 --> 02:36:55,240 SHARED BEFORE, AND ONE DATA 4464 02:36:55,240 --> 02:36:56,000 COORDINATING CENTER. 4465 02:36:56,000 --> 02:36:59,600 AND AS WAS NOTED, THE PURPOSE OF 4466 02:36:59,600 --> 02:37:01,640 THE SCDIC WAS TO DESIGN AND 4467 02:37:01,640 --> 02:37:06,120 ASSESS STRATEGIES TO IMPROVE 4468 02:37:06,120 --> 02:37:12,680 SICKLE CELL DISEASE OUTCOMES 4469 02:37:12,680 --> 02:37:13,760 THROUGH -- AND THE ESTABLISHMENT 4470 02:37:13,760 --> 02:37:16,160 OF A SICKLE CELL DISEASE 4471 02:37:16,160 --> 02:37:17,440 REGISTRY CONTAINING CLINICAL AND 4472 02:37:17,440 --> 02:37:20,520 PATIENT-REPORTED OUTCOMES. 4473 02:37:20,520 --> 02:37:23,560 SO FOR THIS PARTICULAR STUDY, WE 4474 02:37:23,560 --> 02:37:26,240 CONDUCTED A CROSS-SECTIONAL 4475 02:37:26,240 --> 02:37:27,360 EPIDEMIOLOGICAL ANALYSIS 4476 02:37:27,360 --> 02:37:29,000 UTILIZING DATA FROM PARTICIPANTS 4477 02:37:29,000 --> 02:37:31,600 WHO WERE CONSENTED TO 4478 02:37:31,600 --> 02:37:33,240 PARTICIPATE IN THE REGISTRY DATA 4479 02:37:33,240 --> 02:37:35,080 COLLECTION PORTION OF THIS 4480 02:37:35,080 --> 02:37:36,280 STUDY, AND WHO WERE BETWEEN THE 4481 02:37:36,280 --> 02:37:40,960 AGES OF 20 AND 45 YEARS. 4482 02:37:40,960 --> 02:37:42,160 WE EXCLUDED PARTICIPANTS IF THEY 4483 02:37:42,160 --> 02:37:47,280 HAPPENED TO BE PREGNANT UPON 4484 02:37:47,280 --> 02:37:49,160 REGISTRATION -- EXCUSE ME -- 4485 02:37:49,160 --> 02:37:50,120 REGISTRY ENROLLMENT OR IF THEY 4486 02:37:50,120 --> 02:37:52,360 HAD ANY MISSING DATA. 4487 02:37:52,360 --> 02:38:00,800 WE HA ANALYZED DATA GATHERED FRM 4488 02:38:00,800 --> 02:38:02,360 MEDICAL RECORD ABSTRACTION, WE 4489 02:38:02,360 --> 02:38:03,960 ALSO USED MEDICAL ABSTRACTIONS 4490 02:38:03,960 --> 02:38:05,920 ON THE MEDICAL HISTORY OF 4491 02:38:05,920 --> 02:38:08,440 NON-SICKLE CELL DISEASE 4492 02:38:08,440 --> 02:38:09,320 COMPLICATIONS, WHICH ARE THINGS 4493 02:38:09,320 --> 02:38:13,320 LIKE DIABETES OR HYPERTENSION. 4494 02:38:13,320 --> 02:38:15,600 WE ALSO ASSESSED 4495 02:38:15,600 --> 02:38:16,320 SOCIODEMOGRAPHIC CHARACTERISTICS 4496 02:38:16,320 --> 02:38:19,520 SUCH AS AGE, SEX, INSURANCE 4497 02:38:19,520 --> 02:38:24,640 STATUS, AND PATIENT-REPORTED 4498 02:38:24,640 --> 02:38:29,120 OUTCOMES SUCH AS WHAT PRIYA JUST 4499 02:38:29,120 --> 02:38:33,600 PRESENTED FROM THE PROMIS 4500 02:38:33,600 --> 02:38:34,120 SCALES. 4501 02:38:34,120 --> 02:38:35,040 THESE PARTICULARLY INCLUDED 4502 02:38:35,040 --> 02:38:36,240 SICKLE CELL PAIN FREQUENCY AND 4503 02:38:36,240 --> 02:38:36,520 SEVERITY. 4504 02:38:36,520 --> 02:38:39,440 WE ALSO LOOKED AT EMOTIONAL 4505 02:38:39,440 --> 02:38:39,680 DISTRESS. 4506 02:38:39,680 --> 02:38:40,800 HOWEVER, THAT DID NOT COME OUT 4507 02:38:40,800 --> 02:38:43,200 AS YOU WILL SEE IN THE RESULTS 4508 02:38:43,200 --> 02:38:45,280 AS AN IMPORTANT VARIABLE HERE. 4509 02:38:45,280 --> 02:38:55,800 WE CONDUCTED BU BI VARIATE 4510 02:38:56,920 --> 02:38:59,160 ANALYSIS, FINALLY WE CONDUCTED A 4511 02:38:59,160 --> 02:39:00,120 MULTIVARIABLE LOGISTIC 4512 02:39:00,120 --> 02:39:02,600 REGRESSION WITH BACKWARD 4513 02:39:02,600 --> 02:39:03,800 ELIMINATION TO IDENTIFY WHICH 4514 02:39:03,800 --> 02:39:05,960 FACTORS WERE INDEPENDENTLY 4515 02:39:05,960 --> 02:39:10,400 ASSOCIATED WITH OVERWEIGHT OR 4516 02:39:10,400 --> 02:39:14,240 OBESE STATUS. 4517 02:39:14,240 --> 02:39:21,240 SO OUR TOTAL SAMPLE INCLUDED 4518 02:39:21,240 --> 02:39:24,920 1,664 PARTICIPANTS. 4519 02:39:24,920 --> 02:39:28,040 THE MEAN AGE OF THIS GROUP WAS 4520 02:39:28,040 --> 02:39:31,360 30.2 YEARS, AND MEDIAN BMI FOR 4521 02:39:31,360 --> 02:39:32,640 THIS POPULATION OF PATIENTS IN 4522 02:39:32,640 --> 02:39:39,200 THIS COHORT WAS 23.9 KILOGRAMS 4523 02:39:39,200 --> 02:39:40,720 PER METER SQUARED, WHICH 4524 02:39:40,720 --> 02:39:42,640 ACTUALLY FALLS INTO THAT NORMAL 4525 02:39:42,640 --> 02:39:43,880 BODY MASS CATEGORY. 4526 02:39:43,880 --> 02:39:46,480 MOST OF THE POPULATION ALSO 4527 02:39:46,480 --> 02:39:48,240 REPORTED A HOUSEHOLD INCOME NEAR 4528 02:39:48,240 --> 02:39:51,160 THE POVERTY LINE. 4529 02:39:51,160 --> 02:39:57,320 SO IN THIS COHORT SPECIFICALLY, 4530 02:39:57,320 --> 02:39:59,480 42.9% OF THE STUDY SAMPLE FELL 4531 02:39:59,480 --> 02:40:06,680 INTO THIS OVERWEIGHT AND OBESE 4532 02:40:06,680 --> 02:40:08,800 CATEGORY WHERE OBESE STATUS WAS 4533 02:40:08,800 --> 02:40:11,960 MOST PREVALENT AMONG THE SITES 4534 02:40:11,960 --> 02:40:16,480 IN THE SOUTH. 4535 02:40:16,480 --> 02:40:19,120 , WHERE MOST PEOPLE 4536 02:40:19,120 --> 02:40:21,280 WERE OBESE IN THE SOUTHWEST AND 4537 02:40:21,280 --> 02:40:26,480 SOUTHEAST. 4538 02:40:26,480 --> 02:40:27,840 SO ON THIS SLIDE, WE HAVE THE 4539 02:40:27,840 --> 02:40:31,120 RESULTS OF OUR MULTIVARIABLE 4540 02:40:31,120 --> 02:40:32,880 LOGISTIC REGRESSION. 4541 02:40:32,880 --> 02:40:35,800 REGISTRY PARTICIPANTS WHO WERE 4542 02:40:35,800 --> 02:40:41,160 FEMALE OR WERE OLDER, AND 4543 02:40:41,160 --> 02:40:42,680 REPORTED HAVING HYPERTENSION HAD 4544 02:40:42,680 --> 02:40:45,960 HIGHER ODDS OF BEING OVERWEIGHT 4545 02:40:45,960 --> 02:40:46,480 OR OBESE. 4546 02:40:46,480 --> 02:40:49,120 IN OUR UNIVARIATE ANALYSIS, THE 4547 02:40:49,120 --> 02:40:50,440 HYDROXYUREA EFFECT APPEARED TO 4548 02:40:50,440 --> 02:40:53,880 VARY BY GENOTYPE, THUS WE 4549 02:40:53,880 --> 02:40:56,080 INCLUDED HYDROXYUREA IN OUR 4550 02:40:56,080 --> 02:40:59,040 LOGISTIC REGRESSION AS AN 4551 02:40:59,040 --> 02:41:01,320 INTERACTION TERM. 4552 02:41:01,320 --> 02:41:02,840 WE EXAMINE MODELS IN WHICH 4553 02:41:02,840 --> 02:41:04,920 HYDROXYUREA AND GENOTYPE WERE 4554 02:41:04,920 --> 02:41:07,200 ENTERED INTO THE MODEL AS 4555 02:41:07,200 --> 02:41:08,600 SEPARATE VARIABLES. 4556 02:41:08,600 --> 02:41:11,000 HOWEVER, WE RETURNED SIMILAR 4557 02:41:11,000 --> 02:41:12,320 RESULTS AS WHAT IS PRESENTED IN 4558 02:41:12,320 --> 02:41:15,480 THIS MODEL HERE. 4559 02:41:15,480 --> 02:41:17,280 AS CAN BE SEEN HERE, WHEN 4560 02:41:17,280 --> 02:41:23,240 COMPARED TO THE GENOTYPE SS, S 4561 02:41:23,240 --> 02:41:24,080 BETA ZERO AND WITH NO 4562 02:41:24,080 --> 02:41:25,600 HYDROXYUREA USE, THOSE WHO HAD 4563 02:41:25,600 --> 02:41:30,400 THE GENOTYPE OF SC/S BETA PLUS, 4564 02:41:30,400 --> 02:41:32,560 REGARDLESS OF THEIR HYDROXYUREA 4565 02:41:32,560 --> 02:41:35,080 USE, AND THOSE WITH THE GENOTYPE 4566 02:41:35,080 --> 02:41:37,560 SS/S BETA ZERO REPORTING 4567 02:41:37,560 --> 02:41:38,800 HYDROXYUREA USE WERE MORE LIKELY 4568 02:41:38,800 --> 02:41:42,080 TO BE OVERWEIGHT OR OBESE IN 4569 02:41:42,080 --> 02:41:46,160 THIS PARTICULAR COHORT. 4570 02:41:46,160 --> 02:41:50,200 SO IN THIS STUDY, WE DI DESCRIBD 4571 02:41:50,200 --> 02:41:55,040 THE PREVALENCE OF HIGH BMI IN 4572 02:41:55,040 --> 02:41:55,680 ADULTS WITH SICKLE CELL DISEASE 4573 02:41:55,680 --> 02:41:58,320 WHICH IS HIGHER THAN EXPECTED AS 4574 02:41:58,320 --> 02:42:00,720 CURRENT LITERATURE SUGGESTS 4575 02:42:00,720 --> 02:42:02,880 OVERWEIGHT AND OBESE STATUS 4576 02:42:02,880 --> 02:42:04,600 RANGES FROM 20 TO 28%. 4577 02:42:04,600 --> 02:42:08,320 IN OUR STUDY, WE FOUND 42.9%. 4578 02:42:08,320 --> 02:42:10,920 WE IDENTIFIED ASSOCIATIONS 4579 02:42:10,920 --> 02:42:15,760 BETWEEN HIGH BMI, AGE, SEX, 4580 02:42:15,760 --> 02:42:21,400 HYPERTENSION AND THE INTERACTION 4581 02:42:21,400 --> 02:42:23,600 TERM OF -- AND HYDROXYUREA USE. 4582 02:42:23,600 --> 02:42:24,680 THESE IMPLICATIONS FOR SICKLE 4583 02:42:24,680 --> 02:42:26,520 CELL DISEASE MANAGEMENT AS BOTH 4584 02:42:26,520 --> 02:42:28,400 PATIENTS AND PROVIDERS CAN 4585 02:42:28,400 --> 02:42:30,080 BENEFIT FROM ADDITIONAL 4586 02:42:30,080 --> 02:42:33,840 EDUCATION AND RESOURCES ABOUT 4587 02:42:33,840 --> 02:42:34,800 BMI, NUTRITION RELATED TO SICKLE 4588 02:42:34,800 --> 02:42:36,000 CELL DISEASE AND THEIR RELATION 4589 02:42:36,000 --> 02:42:37,280 TO SICKLE CELL DISEASE 4590 02:42:37,280 --> 02:42:39,480 MORBIDITY. 4591 02:42:39,480 --> 02:42:41,200 SO MORE DATA ARE NEEDED TO 4592 02:42:41,200 --> 02:42:42,400 FURTHER CHARACTERIZE THIS 4593 02:42:42,400 --> 02:42:45,240 RELATIONSHIP BETWEEN HIGH BMI 4594 02:42:45,240 --> 02:42:47,160 STATUS, SICKLE CELL DISEASE AND 4595 02:42:47,160 --> 02:42:47,840 NON-SICKLE CELL DISEASE 4596 02:42:47,840 --> 02:42:52,920 CO-MORBID ITSCOMORBIDITIES WITHF 4597 02:42:52,920 --> 02:42:55,400 DEVELOPING STRATEGIES WHICH CAN 4598 02:42:55,400 --> 02:43:03,560 AMCAN -- BETTER UNDERSTANDING OF 4599 02:43:03,560 --> 02:43:03,840 BMI STATUS. 4600 02:43:03,840 --> 02:43:05,360 IESM GOING TO END THERE, AND 4601 02:43:05,360 --> 02:43:07,280 THANK YOU VERY MUCH FOR THIS 4602 02:43:07,280 --> 02:43:10,760 PRESENTATION TODAY. 4603 02:43:10,760 --> 02:43:14,440 >> THANK YOU VERY MUCH, 4604 02:43:14,440 --> 02:43:14,760 DR. IBERMERE. 4605 02:43:14,760 --> 02:43:16,120 YOU MAY HAVE SOME QUESTIONS IN 4606 02:43:16,120 --> 02:43:19,640 THE Q & A AND IN THE CHAT. 4607 02:43:19,640 --> 02:43:21,160 EXAWN OUR LAST SPEAKER FOR THIS 4608 02:43:21,160 --> 02:43:25,080 SESSION IS DR. ELEANOR 4609 02:43:25,080 --> 02:43:28,400 STEVENSON. 4610 02:43:28,400 --> 02:43:30,080 >> GOOD MORNING. 4611 02:43:30,080 --> 02:43:32,040 THANK YOU FOR ALLOWING ME TO 4612 02:43:32,040 --> 02:43:33,880 PRESENT OUR STUDY. 4613 02:43:33,880 --> 02:43:34,640 I'M ELEANOR STEVENSON. 4614 02:43:34,640 --> 02:43:38,200 I AM A CLINICAL PROFESSOR AT THE 4615 02:43:38,200 --> 02:43:40,360 DUKE UNIVERSITY SCHOOL OF 4616 02:43:40,360 --> 02:43:41,680 NURSING AND ALONG WITH MY 4617 02:43:41,680 --> 02:43:42,960 COLLEAGUES, WE ARE PRESENTING A 4618 02:43:42,960 --> 02:43:47,800 STUDY TITLED INFER TELL OUTCOMES 4619 02:43:47,800 --> 02:43:49,600 AMONG FEMALES AND MALES WITH 4620 02:43:49,600 --> 02:43:51,840 SICKLE CELL DISEASE IN THE SCDIC 4621 02:43:51,840 --> 02:43:57,400 REGISTRY. 4622 02:43:57,400 --> 02:44:03,720 SO THESE ARE OUR DISCLOSURES. 4623 02:44:03,720 --> 02:44:05,120 SO A LITTLE BIT OF BACKGROUND. 4624 02:44:05,120 --> 02:44:06,760 BOTH WOMEN AND MEN CAN 4625 02:44:06,760 --> 02:44:08,920 EXPERIENCE INFERTILITY. 4626 02:44:08,920 --> 02:44:11,640 INFERTILITY IS DEFINED THROUGH 4627 02:44:11,640 --> 02:44:12,360 THE WORLD HEALTH ORGANIZATION AS 4628 02:44:12,360 --> 02:44:15,240 THE INABILITY TO CONCEIVE A 4629 02:44:15,240 --> 02:44:17,080 PREGNANCY AFTER 12 MONTHS OF 4630 02:44:17,080 --> 02:44:19,960 REGULAR UNPROTECTED INTERCOURSE. 4631 02:44:19,960 --> 02:44:21,800 AMONGST THE POPULATION OF PEOPLE 4632 02:44:21,800 --> 02:44:25,200 WITH SICKLE CELL, FEMALES ARE AT 4633 02:44:25,200 --> 02:44:27,440 INCREASED RISK FOR DIMINISHED 4634 02:44:27,440 --> 02:44:28,120 OVARIAN RESERVE. 4635 02:44:28,120 --> 02:44:30,720 AND MALES WITH SICKLE CELL 4636 02:44:30,720 --> 02:44:33,000 PRESENT WITH DELAYED PUBERTY, 4637 02:44:33,000 --> 02:44:35,520 LOW TESTOSTERONE AND SPERM 4638 02:44:35,520 --> 02:44:36,600 ABNORMALITIES DUE TO TESTICULAR 4639 02:44:36,600 --> 02:44:44,040 DYSFUNCTION. 4640 02:44:44,040 --> 02:44:48,200 SO INFER T INFERTILITY NATIONALY 4641 02:44:48,200 --> 02:44:48,880 AFFECTS ABOUT 12 TO 15% OF THE 4642 02:44:48,880 --> 02:44:50,440 U.S. POPULATION, BUT IT'S 4643 02:44:50,440 --> 02:44:53,080 CURRENTLY UNKNOWN IF THERE 4644 02:44:53,080 --> 02:44:54,560 ARE -- WHAT THE INCIDENCE IS 4645 02:44:54,560 --> 02:44:55,200 AMONGST THOSE WITH SICKLE CELL. 4646 02:44:55,200 --> 02:44:57,200 THERE ARE NO KNOWN PUBLISHED 4647 02:44:57,200 --> 02:44:59,320 REPORTS THAT PRESENT INFERTILITY 4648 02:44:59,320 --> 02:45:01,160 INCIDENCE OR TREATMENT SEEKING 4649 02:45:01,160 --> 02:45:02,560 FOR BOTH MEN OR WOMEN WITH 4650 02:45:02,560 --> 02:45:04,040 SICKLE CELL DISEASE. 4651 02:45:04,040 --> 02:45:07,080 SO WE NEED MORE INFORMATION TO 4652 02:45:07,080 --> 02:45:08,720 UNDERSTAND INFERTILITY FOR THOSE 4653 02:45:08,720 --> 02:45:10,160 INDIVIDUALS WITH SICKLE CELL SO 4654 02:45:10,160 --> 02:45:16,920 WE CAN IMPROVE CLINICAL CARE. 4655 02:45:16,920 --> 02:45:19,640 SO THE AIMS WERE TO DESCRIBE THE 4656 02:45:19,640 --> 02:45:21,000 PREVALENCE OF FEMALE AND MALE 4657 02:45:21,000 --> 02:45:23,520 FACTOR INFERTILITY IN PERSONS 4658 02:45:23,520 --> 02:45:24,280 WITH SICKLE CELL DISEASE IN THE 4659 02:45:24,280 --> 02:45:28,360 REREGISTRY, TO DESCRIBE 4660 02:45:28,360 --> 02:45:29,720 INFERTILITY TREATMENT SEEKING 4661 02:45:29,720 --> 02:45:32,400 AMONG FEMALES AND MALES WITH 4662 02:45:32,400 --> 02:45:33,840 INFERTILITY WHO ARE ENROLLED IN 4663 02:45:33,840 --> 02:45:34,560 THE REGISTRY AND DETERMINE IF 4664 02:45:34,560 --> 02:45:36,080 THERE ARE DIFFERENCES BETWEEN 4665 02:45:36,080 --> 02:45:39,160 FERTILE AND INFERTILE GROUP 4666 02:45:39,160 --> 02:45:43,800 BASED ON SOCIODEMOGRAPHIC 4667 02:45:43,800 --> 02:45:44,120 STATISTICS. 4668 02:45:44,120 --> 02:45:45,600 WE USED CONSORTIUM DATA 4669 02:45:45,600 --> 02:45:47,760 COLLECTED USING SELF-REPORT 4670 02:45:47,760 --> 02:45:49,040 SURVEYS, MEDICAL RECORDS AND 4671 02:45:49,040 --> 02:45:50,480 LABORATORY ABSTRACTION FORMS. 4672 02:45:50,480 --> 02:45:51,880 FEMALE AND MALE PARTICIPANTS 4673 02:45:51,880 --> 02:45:54,080 COMPLETED DATA COLLECTION FORMS 4674 02:45:54,080 --> 02:45:57,360 INCLUDED SEX-SPECIFIC 4675 02:45:57,360 --> 02:45:58,080 INFERTILITY QUESTIONS. 4676 02:45:58,080 --> 02:46:02,360 OF THE 2,440 PERSONS IN THE 4677 02:46:02,360 --> 02:46:03,360 CONSORTIUM, 2374 COMPLETED THOSE 4678 02:46:03,360 --> 02:46:07,400 PREGNANCY FORMS AND OF THESE, 4679 02:46:07,400 --> 02:46:09,600 THE MAJORITY, 2315 RESPONDED TO 4680 02:46:09,600 --> 02:46:16,680 THE THE INF INFERTILITY-RELATED 4681 02:46:16,680 --> 02:46:17,120 QUESTIONS. 4682 02:46:17,120 --> 02:46:21,520 SO BA BASELINE CHARACTERISTICS 4683 02:46:21,520 --> 02:46:26,200 CHARACTERISTICS AND RISK 4684 02:46:26,200 --> 02:46:27,680 FACTORS, MEAN AND STANDARD 4685 02:46:27,680 --> 02:46:29,240 DEVIATION FOR CONTINUOUS 4686 02:46:29,240 --> 02:46:30,760 VARIABLES. 4687 02:46:30,760 --> 02:46:34,120 CATEGORICAL VARIABLES WERE USING 4688 02:46:34,120 --> 02:46:36,680 FISHER'S EXACT TEST OND 4689 02:46:36,680 --> 02:46:38,080 CHI-SQUARE, WE SET A P VALUE OF 4690 02:46:38,080 --> 02:46:41,960 LESS THAN .05 AS STATISTICALLY 4691 02:46:41,960 --> 02:46:42,960 SPECIFIC. 4692 02:46:42,960 --> 02:46:44,640 FIRST UNIVARIATE ANALYSIS WERE 4693 02:46:44,640 --> 02:46:46,720 USED AS THE FIRST SCREENING STEP 4694 02:46:46,720 --> 02:46:48,360 TO ANALYZE ASSOCIATION BETWEEN 4695 02:46:48,360 --> 02:46:49,560 INFERTILITY AND SOCIODEMOGRAPHIC 4696 02:46:49,560 --> 02:46:50,760 AND CLINICAL VARIABLES. 4697 02:46:50,760 --> 02:46:52,720 NEXT, BIOLOGICALLY AND SOCIALLY 4698 02:46:52,720 --> 02:46:54,680 INFLUENTIAL VARIABLES WERE USED 4699 02:46:54,680 --> 02:46:56,520 IN A MULTIVARIABLE REGRESSION 4700 02:46:56,520 --> 02:46:57,400 MODEL. 4701 02:46:57,400 --> 02:46:59,600 BACKWARD ELIMINATION LOGISTIC 4702 02:46:59,600 --> 02:47:02,280 REGRESSION WITH AN EXIT 4703 02:47:02,280 --> 02:47:04,680 CRITERION OF P LESS THAN .05 WAS 4704 02:47:04,680 --> 02:47:07,200 USED TO IDENTIFY STATISTICALLY 4705 02:47:07,200 --> 02:47:07,960 SIGNIFICANT COVARIATES AND 4706 02:47:07,960 --> 02:47:09,080 DETERMINE A MORE PERSONAL USE 4707 02:47:09,080 --> 02:47:10,080 MODEL. 4708 02:47:10,080 --> 02:47:11,480 MODEL FITTING INCLUDING A 4709 02:47:11,480 --> 02:47:12,520 COMPARISON OF THE FULL AND 4710 02:47:12,520 --> 02:47:14,200 REDUCED MODELS TO PROVIDE TESTS 4711 02:47:14,200 --> 02:47:17,240 OF AN IMPROVED FIT. 4712 02:47:17,240 --> 02:47:19,880 ODDS RATIO AND 95% CONFIDENCE 4713 02:47:19,880 --> 02:47:22,920 INTERVALS WERE OBTAINED FOR 4714 02:47:22,920 --> 02:47:26,640 VARIABLES IN THE REMAINING FINAL 4715 02:47:26,640 --> 02:47:29,880 MODEL. 4716 02:47:29,880 --> 02:47:31,240 SO OUR RESULTS, I APOLOGIZE, 4717 02:47:31,240 --> 02:47:33,960 THAT N SHOULD BE ACTUALLY 2311. 4718 02:47:33,960 --> 02:47:35,880 SO THERE WERE 2311 PARTICIPANTS 4719 02:47:35,880 --> 02:47:36,880 IN THE REGISTRY THAT WERE 4720 02:47:36,880 --> 02:47:38,680 INCLUDED IN THE FINAL ANALYSIS. 4721 02:47:38,680 --> 02:47:41,280 AND JUST TO LOOK AT SOME OF THE 4722 02:47:41,280 --> 02:47:43,000 DEMOGRAPHIC BREAKDOWN, THE MEAN 4723 02:47:43,000 --> 02:47:46,160 AGE WERE 29.2 YEARS OF AGE. 4724 02:47:46,160 --> 02:47:49,120 THE MAJORITY OF THE SAMPLE, 4725 02:47:49,120 --> 02:47:52,280 95.6, WERE BLACK, 73% WERE NEVER 4726 02:47:52,280 --> 02:47:53,480 MARRIED. 4727 02:47:53,480 --> 02:47:55,640 NEARLY 63% WERE INSURED THROUGH 4728 02:47:55,640 --> 02:47:57,720 EITHER MEDICARE, MEDICAID, 4729 02:47:57,720 --> 02:47:59,240 MILITARY INSURANCE. 4730 02:47:59,240 --> 02:48:02,080 73% REPORTED HAVING HEMOGLOBIN 4731 02:48:02,080 --> 02:48:04,600 SS GENOTYPE, AND NEARLY 74% 4732 02:48:04,600 --> 02:48:06,360 EITHER WERE CURRENTLY OR 4733 02:48:06,360 --> 02:48:14,680 PREVIOUSLY TAKING HYDROXYUREA. 4734 02:48:14,680 --> 02:48:17,280 SO THE FIRST AIM, PREVALENCE AND 4735 02:48:17,280 --> 02:48:18,040 INFER TELL DIAGNOSIS. 4736 02:48:18,040 --> 02:48:20,680 INFERTILITY DIAGNOSIS. 4737 02:48:20,680 --> 02:48:27,640 OF OUR SAMPLE OF 2311, 23.9% 4738 02:48:27,640 --> 02:48:38,240 REPORT THE INFER TELL. 4739 02:48:38,240 --> 02:48:39,120 . DEFINED 4740 02:48:39,120 --> 02:48:40,680 AS NOT BEING ABLE TO CONCEIVE A 4741 02:48:40,680 --> 02:48:41,960 PREGNANCY WITHIN 12 MONTHS OF 4742 02:48:41,960 --> 02:48:42,480 UNPROTECTED INTERCOURSE. 4743 02:48:42,480 --> 02:48:44,480 THE REASONS FOR INFERTILITY ARE 4744 02:48:44,480 --> 02:48:46,160 SHOWN HERE BUT AS YOU CAN SEE, 4745 02:48:46,160 --> 02:48:47,200 THE THEY ONLY HAVE DIAGNOSES FOR 4746 02:48:47,200 --> 02:48:49,160 A SMALL NUMBER OF THOSE WITH 4747 02:48:49,160 --> 02:48:50,360 INFERTILITY AND ON THE NEXT 4748 02:48:50,360 --> 02:49:00,200 SLIDE, YOU WILL SEE WHY. 4749 02:49:00,200 --> 02:49:02,360 ONLY 22.8%, SO THAT IS AN N OF 4750 02:49:02,360 --> 02:49:05,920 100 OF THOSE 441 OF PARTICIPANTS 4751 02:49:05,920 --> 02:49:07,560 WHO REPORTED INFERTILITY 4752 02:49:07,560 --> 02:49:10,160 ACTUALLY SOUGHT OUT AN 4753 02:49:10,160 --> 02:49:10,720 INFERTILITY CONSULTATION. 4754 02:49:10,720 --> 02:49:13,000 SO NOT EVEN 25% OF THOSE WHO 4755 02:49:13,000 --> 02:49:14,760 WERE EXPERIENCING INFERTILITY 4756 02:49:14,760 --> 02:49:17,360 TRIED TO SEEK OUT SOME HELP. 4757 02:49:17,360 --> 02:49:20,880 OF THOSE WHO DID, 21.7% WERE 4758 02:49:20,880 --> 02:49:22,520 FEMALE AND 25% WERE MALE. 4759 02:49:22,520 --> 02:49:24,680 OF THE 100 THAT SOUGHT 4760 02:49:24,680 --> 02:49:27,760 CONSULTATION, ONLY 41% RECEIVED 4761 02:49:27,760 --> 02:49:30,760 INFERTILITY TESTING. 4762 02:49:30,760 --> 02:49:33,080 WHEN YOU CONSIDER 441 REPORTED 4763 02:49:33,080 --> 02:49:34,480 INFERTILITY, ONLY 10% ACTUALLY 4764 02:49:34,480 --> 02:49:35,880 RECEIVED SOME SORT OF MEDICAL 4765 02:49:35,880 --> 02:49:39,080 EVALUATION FOR THEIR 4766 02:49:39,080 --> 02:49:39,400 INFERTILITY. 4767 02:49:39,400 --> 02:49:41,160 SO AS YOU CAN ALSO SEE, VERY FEW 4768 02:49:41,160 --> 02:49:42,040 OF OUR SAMPLE RECEIVED TREATMENT 4769 02:49:42,040 --> 02:49:49,120 TO HELP THEM BECOME PREGNANT. 4770 02:49:49,120 --> 02:49:54,280 IN A COMPARISON OF THOSE WITH IH 4771 02:49:54,280 --> 02:49:58,520 INFERTILITY AND WITHOUT, 4772 02:49:58,520 --> 02:49:59,160 SOCIODEMOGRAPHIC CHARACTERISTICS 4773 02:49:59,160 --> 02:50:02,360 OF SAMPLE, COMPARED TO 4774 02:50:02,360 --> 02:50:03,680 INDIVIDUALS 18 TO 29 YEARS OF 4775 02:50:03,680 --> 02:50:07,200 AGE, THOSE WHO WERE 30 TO 34 4776 02:50:07,200 --> 02:50:09,600 ACTUALLY HAD MORE THAN TWICE THE 4777 02:50:09,600 --> 02:50:11,400 ODDS OF INFERTILITY NOT 4778 02:50:11,400 --> 02:50:13,920 SURPRISINGLY AND 35 ABOVE HAD A 4779 02:50:13,920 --> 02:50:15,760 1.66% INCREASED ODDS OF 4780 02:50:15,760 --> 02:50:16,640 INFERTILITY. 4781 02:50:16,640 --> 02:50:19,240 THOSE WITH INFERTILITY WERE LESS 4782 02:50:19,240 --> 02:50:20,560 LIKELY TO BE NON-EMPLOYED BY 4783 02:50:20,560 --> 02:50:21,880 CHOICE BUT MORE LIKELY TO BE 4784 02:50:21,880 --> 02:50:23,720 EMPLOYED. 4785 02:50:23,720 --> 02:50:24,400 MARITAL STATUS, DIFFERENT 4786 02:50:24,400 --> 02:50:25,360 BETWEEN THE GROUPS. 4787 02:50:25,360 --> 02:50:27,320 MALES WHO NEVER HAD BEEN MARRIED 4788 02:50:27,320 --> 02:50:28,720 LESS LIKELY TO REPORT 4789 02:50:28,720 --> 02:50:32,320 INFERTILITY THAN THEIR MARRIED 4790 02:50:32,320 --> 02:50:33,000 COUNTERPARTS. 4791 02:50:33,000 --> 02:50:34,440 AND HYDROXYUREA USE AND GENOTYPE 4792 02:50:34,440 --> 02:50:35,760 WERE NOT FOUND TO BE DIFFERENT 4793 02:50:35,760 --> 02:50:42,000 BETWEEN THE GROUPS. 4794 02:50:42,000 --> 02:50:43,800 SO IN SUMMARY, OUR SAMPLE HAD 4795 02:50:43,800 --> 02:50:45,160 HIGHER RATES OF INFERTILITY THAP 4796 02:50:45,160 --> 02:50:47,440 THE GENERAL PUBLIC. 4797 02:50:47,440 --> 02:50:47,640 THAN 4798 02:50:47,640 --> 02:50:50,240 THE GENERAL PUBLIC, UP 17% MALES 4799 02:50:50,240 --> 02:50:51,680 AND 24% FEMALES. 4800 02:50:51,680 --> 02:50:54,000 THIS IS HIGHER THAN THE NATIONAL 4801 02:50:54,000 --> 02:50:56,080 TRENDS OF ABOUT 12% MALES AND 11 4802 02:50:56,080 --> 02:50:58,720 TO 15% FEMALE, SO MUCH HIGHER 4803 02:50:58,720 --> 02:50:59,520 THAN THE NATIONAL AVERAGE. 4804 02:50:59,520 --> 02:51:02,160 ONLY A QUARTER OF OUR SAMPLE 4805 02:51:02,160 --> 02:51:03,720 WITH INFERTILITY SOUGHT 4806 02:51:03,720 --> 02:51:04,800 FERTILITY CONSULTATION, AND THIS 4807 02:51:04,800 --> 02:51:06,640 IS ABOUT HALF THE NATIONAL RATE. 4808 02:51:06,640 --> 02:51:09,720 SO ABOUT 50% OF PEOPLE IN THE 4809 02:51:09,720 --> 02:51:11,360 UNITED STATES WITH INFERTILITY 4810 02:51:11,360 --> 02:51:14,280 WILL SEEK CARE FOR THEIR 4811 02:51:14,280 --> 02:51:15,160 INFERTILITY. 4812 02:51:15,160 --> 02:51:20,840 OF THOSE WHO DID SEEK OUT CARE, 4813 02:51:20,840 --> 02:51:22,040 FEWER DID SEEK OUT TREATMENT FOR 4814 02:51:22,040 --> 02:51:22,920 IT. 4815 02:51:22,920 --> 02:51:23,680 IT'S IMPORTANT TO KNOW THAT 4816 02:51:23,680 --> 02:51:24,360 NATIONALLY, WOMEN FROM RACIAL 4817 02:51:24,360 --> 02:51:26,520 AND ETHNIC MINORITIES UTILIZE 4818 02:51:26,520 --> 02:51:28,920 INFERTILITY SERVICES LESS THAN 4819 02:51:28,920 --> 02:51:30,560 NON-HISPANIC WHITE WOMEN. 4820 02:51:30,560 --> 02:51:32,520 OF THE 100 PARTICIPANTS IN OUR 4821 02:51:32,520 --> 02:51:34,800 STUDY WHO REPORT INFERTILITY, 4822 02:51:34,800 --> 02:51:36,760 VERY FEW HAD RECEIVED MEDICAL 4823 02:51:36,760 --> 02:51:38,120 HELP IN CONCEIVING. 4824 02:51:38,120 --> 02:51:39,520 THE MOST COMMON TREATMENT 4825 02:51:39,520 --> 02:51:40,720 OFFERED WAS ADVICE. 4826 02:51:40,720 --> 02:51:42,880 ONLY 12 RECEIVED OVULATION 4827 02:51:42,880 --> 02:51:47,160 MEDICATIONS SUCH AS CLOAMID FOR 4828 02:51:47,160 --> 02:51:50,000 THEIR TREATMENT PLAN. 4829 02:51:50,000 --> 02:51:54,440 ONLY ONE REPORTED -- A LARGE 4830 02:51:54,440 --> 02:51:56,440 PERCENTAGE OF OUR SAMPLE HAS 4831 02:51:56,440 --> 02:51:57,080 GOVERNMENT INSURANCE, WHICH IT'S 4832 02:51:57,080 --> 02:51:59,720 IMPORTANT TO NOTE DOES NOT 4833 02:51:59,720 --> 02:52:00,680 INCLUDE INFERTILITY TREATMENT. 4834 02:52:00,680 --> 02:52:03,520 SO THIS REALLY HAS ACCESSING 4835 02:52:03,520 --> 02:52:06,480 POLICY IMPLICATIONS. 4836 02:52:06,480 --> 02:52:07,720 INFERTILITY CARE IS REALLY 4837 02:52:07,720 --> 02:52:07,960 EXPENSIVE. 4838 02:52:07,960 --> 02:52:09,880 JUST AN EVALUATION ALONE CAN BE 4839 02:52:09,880 --> 02:52:11,520 UPWARDS OF $500 AND THAT DOESN'T 4840 02:52:11,520 --> 02:52:13,800 INCLUDE SOME OF THE ASSOCIATED 4841 02:52:13,800 --> 02:52:14,360 TESTING. 4842 02:52:14,360 --> 02:52:15,680 TREATMENT IS IN THE THOUSANDS 4843 02:52:15,680 --> 02:52:17,520 AND IN VITRO IS UPWARDS OF ABOUT 4844 02:52:17,520 --> 02:52:18,720 $20,000 PER CYCLE. 4845 02:52:18,720 --> 02:52:21,360 AND SO WITHOUT INSURANCE, THE 4846 02:52:21,360 --> 02:52:23,960 COST IS REALLY PROHIBITIVE FOR 4847 02:52:23,960 --> 02:52:25,800 MOST PEOPLE. 4848 02:52:25,800 --> 02:52:27,440 IN THE U.S. IN GENERAL, THERE'S 4849 02:52:27,440 --> 02:52:30,520 LIMITED INSURANCE COVERAGE FOR 4850 02:52:30,520 --> 02:52:31,920 INFERTILITY SERVICES. 4851 02:52:31,920 --> 02:52:34,840 ONLY 19 STATES HAVE MANDATED 4852 02:52:34,840 --> 02:52:37,200 INFERTILITY INSURANCE COVERAGE 4853 02:52:37,200 --> 02:52:39,480 LAWS, OF WHICH ONLY 13 STATES 4854 02:52:39,480 --> 02:52:41,000 INCLUDE IN VITRO COVERAGE, AND 4855 02:52:41,000 --> 02:52:41,920 ONLY 11 STATES MANDATE COVERAGE 4856 02:52:41,920 --> 02:52:45,280 FOR FERTILITY PRESERVATION LAWS 4857 02:52:45,280 --> 02:52:47,800 FOR IATROGENIC INFERTILITY. 4858 02:52:47,800 --> 02:52:49,640 WHILE MEDICAID MAY COVER THE 4859 02:52:49,640 --> 02:52:52,040 INFERTILITY EVALUATION, THERE'S 4860 02:52:52,040 --> 02:52:53,040 ESSENTIALLY AS I SAID BEFORE NO 4861 02:52:53,040 --> 02:52:54,160 COVERAGE FOR TREATMENT. 4862 02:52:54,160 --> 02:52:55,640 SO NATIONALLY, THERE IS A HIGHER 4863 02:52:55,640 --> 02:52:57,200 SHARE OF BLACK AND HISPANIC 4864 02:52:57,200 --> 02:52:59,240 WOMEN THAN WHITE WOMEN WHO ARE 4865 02:52:59,240 --> 02:53:00,680 COVERED BY MEDICAID OR 4866 02:53:00,680 --> 02:53:01,640 UNINSURED, WHICH IS CONSISTENT 4867 02:53:01,640 --> 02:53:03,160 WITH OUR SAMPLE, AND THOSE WITH 4868 02:53:03,160 --> 02:53:05,160 SICKLE CELL HAVE HIGHER RATES OF 4869 02:53:05,160 --> 02:53:06,800 MEDICAID UNEMPLOYMENT THAN THE 4870 02:53:06,800 --> 02:53:08,240 GENERAL BLACK AND HISPANIC 4871 02:53:08,240 --> 02:53:09,120 POPULATION, SO INSURANCE 4872 02:53:09,120 --> 02:53:10,840 COVERAGE BECOMES A SIGNIFICANT 4873 02:53:10,840 --> 02:53:11,880 BARRIER TO ACCESS TO CARE NEEDED 4874 02:53:11,880 --> 02:53:14,360 FOR THOSE WITH SICKLE CELL WHO 4875 02:53:14,360 --> 02:53:18,600 ARE EXPERIENCING INFERTILITY. 4876 02:53:18,600 --> 02:53:20,800 SO AS CARE FOR INDIVIDUALS WITH 4877 02:53:20,800 --> 02:53:22,000 SICKLE CELL CONTINUES TO 4878 02:53:22,000 --> 02:53:25,800 IMPROVE, SO SHOULD THAT FOR 4879 02:53:25,800 --> 02:53:26,880 INFERTILITY. 4880 02:53:26,880 --> 02:53:28,800 MORE WORK REALLY IS NEEDED TO 4881 02:53:28,800 --> 02:53:31,960 HELP IMPROVE ACCESS TO CARE FOR 4882 02:53:31,960 --> 02:53:32,720 INFERTILITY EVALUATION AND 4883 02:53:32,720 --> 02:53:34,440 APPROPRIATE TREATMENT FOR THOSE 4884 02:53:34,440 --> 02:53:41,160 WHO DESIRE HAVING CHILDREN. 4885 02:53:41,160 --> 02:53:42,120 THOSE ARE MY REFERENCES. 4886 02:53:42,120 --> 02:53:43,480 WITH THAT, I'M HAPPY TO ANSWER 4887 02:53:43,480 --> 02:53:44,880 QUESTIONS. 4888 02:53:44,880 --> 02:53:45,280 IF WE HAVE TIME. 4889 02:53:45,280 --> 02:53:46,720 >> THANK YOU, DR. STEVENSON. 4890 02:53:46,720 --> 02:53:49,360 AND WE HAVE FINISHED ON TIME, 4891 02:53:49,360 --> 02:53:52,200 ACTUALLY THREE MINUTES EARLY. 4892 02:53:52,200 --> 02:53:53,720 THERE ARE SOME QUESTIONS IN THE 4893 02:53:53,720 --> 02:53:54,960 CHAT IN THE Q & A, BUT IF 4894 02:53:54,960 --> 02:53:58,200 ANYBODY HAS ANY QUESTIONS FOR 4895 02:53:58,200 --> 02:53:59,680 ANY OF THE PANELISTS OR ANYTHING 4896 02:53:59,680 --> 02:54:03,600 ABOUT THE SCDIC CONSORTIUM, YOU 4897 02:54:03,600 --> 02:54:04,640 HAVE A FEW MINUTES WHERE YOU CAN 4898 02:54:04,640 --> 02:54:06,400 TAKE THAT OPPORTUNITY OR WE CAN 4899 02:54:06,400 --> 02:54:08,040 TURN EVERYTHING BACK OVER TO 4900 02:54:08,040 --> 02:54:17,560 NHLBI. 4901 02:54:17,560 --> 02:54:19,480 >> I DON'T SEE ANY HANDS UP AT 4902 02:54:19,480 --> 02:54:23,040 THE MOMENT. 4903 02:54:23,040 --> 02:54:25,360 AMIR, DO YOU SEE ANY HANDS UP? 4904 02:54:25,360 --> 02:54:26,920 OR ALEX, DO YOU SEE ANY HANDS 4905 02:54:26,920 --> 02:54:27,120 UP? 4906 02:54:27,120 --> 02:54:28,080 I DON'T SEE ANY. 4907 02:54:28,080 --> 02:54:29,160 >> ALL RIGHT. 4908 02:54:29,160 --> 02:54:31,240 I'LL TURN IT BACK OVER TO YOU. 4909 02:54:31,240 --> 02:54:37,160 >> WELL, THANK YOU SO MUCH. 4910 02:54:37,160 --> 02:54:40,000 FOR AN EXCELLENT SESSION. 4911 02:54:40,000 --> 02:54:42,440 THERE ARE SOME COMMENTS IN THE 4912 02:54:42,440 --> 02:54:45,120 CHAT AGAIN, SO PLEASE RESPOND TO 4913 02:54:45,120 --> 02:54:48,200 THEM ACCORDINGLY. 4914 02:54:48,200 --> 02:54:51,480 SO HERE WE MOVE ON TO OUR NEXT 4915 02:54:51,480 --> 02:54:54,240 COMPONENT, WHICH IS THE ARBERY 4916 02:54:54,240 --> 02:54:56,080 SEARCH COLLABORATIVE, AND 4917 02:54:56,080 --> 02:54:57,720 DR. CHARLES ABRAMS IS GOING TO 4918 02:54:57,720 --> 02:55:01,200 BE CHAIRING THIS SESSION, AND 4919 02:55:01,200 --> 02:55:03,840 I'LL LET DR. ABRAMS TAKE OVER. 4920 02:55:03,840 --> 02:55:04,160 DR. ABRAMS? 4921 02:55:04,160 --> 02:55:06,560 >> THANK YOU VERY MUCH. 4922 02:55:06,560 --> 02:55:09,840 THANKS, EVERYONE. 4923 02:55:09,840 --> 02:55:12,040 I'D LIKE TO THANK JULIE, NAOMI, 4924 02:55:12,040 --> 02:55:13,360 ALEX AND EVERYONE WHO HAS BEEN 4925 02:55:13,360 --> 02:55:14,760 PUTTING TOGETHER A GREAT 4926 02:55:14,760 --> 02:55:16,640 SYMPOSIUM AND FOR THE CHANCE TO 4927 02:55:16,640 --> 02:55:19,360 TALK WITH MY COLLEAGUES HERE 4928 02:55:19,360 --> 02:55:19,680 TODAY. 4929 02:55:19,680 --> 02:55:23,160 SO THIS IS GOING TO BE A 4930 02:55:23,160 --> 02:55:24,080 MULTIPART PRESENTATION, IF I 4931 02:55:24,080 --> 02:55:25,120 COULD TROUBLE YOU TO ADVANCE TO 4932 02:55:25,120 --> 02:55:28,960 THE NEXT SLIDE. 4933 02:55:28,960 --> 02:55:30,840 SO I'M JUST GOING TO BE GIVING 4934 02:55:30,840 --> 02:55:33,480 AN INTRODUCTION ON THE RESEARCH 4935 02:55:33,480 --> 02:55:34,840 COLLABORATIVE OR THE ASH RC AS 4936 02:55:34,840 --> 02:55:38,720 WELL AS OUR RESEARCH INITIATIVE, 4937 02:55:38,720 --> 02:55:40,000 THEN MY COLLEAGUES ARE GOING TO 4938 02:55:40,000 --> 02:55:41,120 BE TALKING ABOUT VARIOUS 4939 02:55:41,120 --> 02:55:51,440 COMPONENTS OF IT. 4940 02:55:54,520 --> 02:55:56,440 SO ABOUT A HALF A DOZEN YEARS 4941 02:55:56,440 --> 02:55:58,280 AGO, THE AMERICAN SOCIETY OF 4942 02:55:58,280 --> 02:55:59,480 HEMATOLOGY MADE A COMMITMENT TO 4943 02:55:59,480 --> 02:56:02,320 MAKE A DIFFERENCE IN THE CARE OF 4944 02:56:02,320 --> 02:56:03,520 INDIVIDUALS WITH SICKLE CELL 4945 02:56:03,520 --> 02:56:06,400 DISEASE, AND SO THEY LAUNCHED A 4946 02:56:06,400 --> 02:56:07,360 MULTIPRONGED INITIATIVE, AND 4947 02:56:07,360 --> 02:56:09,360 THAT INVOLVED WORK ON IMPROVING 4948 02:56:09,360 --> 02:56:13,160 ACCESS TO CARE INVOLVED WORK ON 4949 02:56:13,160 --> 02:56:15,800 A POLICY LEVEL, A NATIONAL 4950 02:56:15,800 --> 02:56:18,000 LEVEL, INVOLVED FORMING A 4951 02:56:18,000 --> 02:56:21,600 COALITION OF SICKLE CELL 4952 02:56:21,600 --> 02:56:22,600 INTERESTED GROUPS TO GIVE A 4953 02:56:22,600 --> 02:56:24,200 VOICE TO THE INDIVIDUALS WITH 4954 02:56:24,200 --> 02:56:25,440 SICKLE CELL AND THERE WAS A 4955 02:56:25,440 --> 02:56:27,600 GLOBAL INITIATIVE THAT'S STILL 4956 02:56:27,600 --> 02:56:29,280 ONGOING WHICH INVOLVES NEWBORN 4957 02:56:29,280 --> 02:56:30,880 SCREENING IN SUB-SAHARAN AFER 4958 02:56:30,880 --> 02:56:35,640 KA. BUT WAFRICA.THERE WAS ALSO N 4959 02:56:35,640 --> 02:56:37,600 IMPROVING RESEARCH AND DOING 4960 02:56:37,600 --> 02:56:40,200 THINGS TO DIRECTLY HELP THE CARE 4961 02:56:40,200 --> 02:56:41,640 OF INDIVIDUALS WITH THIS 4962 02:56:41,640 --> 02:56:42,960 DISEASE, AND SO FOR THAT, THEY 4963 02:56:42,960 --> 02:56:46,360 FORMED A RESEARCH COLLABORATIVE 4964 02:56:46,360 --> 02:56:47,640 AND IF YOU COULD ADVANCE TO THE 4965 02:56:47,640 --> 02:56:49,400 NEXT SLIDE, IT'S WHAT I'D LIKE 4966 02:56:49,400 --> 02:56:50,400 TO BE INTRODUCING TODAY. 4967 02:56:50,400 --> 02:56:54,240 SO THE ASH RESEARCH 4968 02:56:54,240 --> 02:56:55,880 COLLABORATIVE IS DESIGNED TO 4969 02:56:55,880 --> 02:56:56,640 FOSTER INTERACTIONS BETWEEN 4970 02:56:56,640 --> 02:56:58,640 PEOPLE IN ACADEMIA AND THE 4971 02:56:58,640 --> 02:56:59,520 GOVERNMENT AND IN INDUSTRY, 4972 02:56:59,520 --> 02:57:01,040 BECAUSE WE BELIEVE THAT 4973 02:57:01,040 --> 02:57:02,240 COLLECTIVELY TOGETHER WE CAN 4974 02:57:02,240 --> 02:57:03,880 ACCELERATE RESEARCH AND IMPROVE 4975 02:57:03,880 --> 02:57:04,200 CARE. 4976 02:57:04,200 --> 02:57:06,360 SO THAT IS THE PURPOSE OF THE 4977 02:57:06,360 --> 02:57:10,880 ASH RC, AND THE FOCUS MOST 4978 02:57:10,880 --> 02:57:12,160 RECENTLY HAS BEEN ON SICKLE CELL 4979 02:57:12,160 --> 02:57:12,520 DISEASE. 4980 02:57:12,520 --> 02:57:16,800 SO IF YOU WOULD GO TO THE NEXT 4981 02:57:16,800 --> 02:57:22,480 SLIDE. 4982 02:57:22,480 --> 02:57:27,000 SO THERE ARE TWO MAIN PRONGS TO 4983 02:57:27,000 --> 02:57:31,000 THIS RESEARCH ENDEAVOR, AND SO 4984 02:57:31,000 --> 02:57:32,760 FIRST THERE'S A CLINICAL TRIAL 4985 02:57:32,760 --> 02:57:34,760 NETWORK, AND SO THIS IS COMPOSED 4986 02:57:34,760 --> 02:57:36,280 OF SITES AND COMMUNITY MEMBERS, 4987 02:57:36,280 --> 02:57:37,880 AND IT PROVIDES THE 4988 02:57:37,880 --> 02:57:39,080 INFRASTRUCTURE TO ACCELERATE 4989 02:57:39,080 --> 02:57:41,400 SICKLE CELL DISEASE RESEARCH. 4990 02:57:41,400 --> 02:57:43,720 AND THEN SECOND, THERE'S A DATA 4991 02:57:43,720 --> 02:57:46,120 HUB, AND SO THIS INVOLVES THE 4992 02:57:46,120 --> 02:57:49,200 INGESTION OF REAL WORLD DATA, AS 4993 02:57:49,200 --> 02:57:51,120 WELL AS THE SICKLE CELL DISEASE 4994 02:57:51,120 --> 02:57:51,760 LEARNING COMMUNITY THAT YOU'RE 4995 02:57:51,760 --> 02:57:52,960 GOING TO BE HEARING ABOUT THAT 4996 02:57:52,960 --> 02:57:55,000 PROMOTES THE IMPLEMENTATION OF 4997 02:57:55,000 --> 02:57:56,600 EVIDENCE-BASED PRACTICE TO 4998 02:57:56,600 --> 02:57:57,360 IMPROVE SICKLE CELL DISEASE 4999 02:57:57,360 --> 02:57:57,880 CARE. 5000 02:57:57,880 --> 02:58:02,480 SO IF WE GO TO THE NEXT SLIDE, 5001 02:58:02,480 --> 02:58:03,840 THERE ARE GOING TO BE FOUR TALKS 5002 02:58:03,840 --> 02:58:04,800 THAT FOLLOW ME. 5003 02:58:04,800 --> 02:58:07,000 FIRST, NICOLE MORTIER IS GOING 5004 02:58:07,000 --> 02:58:08,400 TO BE GIVING A TALK ON THE 5005 02:58:08,400 --> 02:58:10,600 CLINICAL TRIAL NETWORK. 5006 02:58:10,600 --> 02:58:16,400 SECOND, KATHLEEN THAHEWITT ON TE 5007 02:58:16,400 --> 02:58:17,720 DATA HUB. 5008 02:58:17,720 --> 02:58:19,000 EMILY TUCKER ON REAL WORLD 5009 02:58:19,000 --> 02:58:21,320 EVIDENCE AND TO WRAP THINGS UP, 5010 02:58:21,320 --> 02:58:22,320 ALEXIS THOMPSON IS GOING TO BE 5011 02:58:22,320 --> 02:58:23,000 TALKING ABOUT THE LEARNING 5012 02:58:23,000 --> 02:58:23,280 COMMUNITY. 5013 02:58:23,280 --> 02:58:24,640 SO WITH THAT, IF YOU GO TO THE 5014 02:58:24,640 --> 02:58:35,200 NEXT SLIDE, I'D LIKE TO PASS IT 5015 02:58:39,160 --> 02:58:41,320 OVER TO NICOLE MORTIER. 5016 02:58:41,320 --> 02:58:43,800 >> AS DR. ABRAMS JUST MENTIONED, 5017 02:58:43,800 --> 02:58:45,000 THE NETWORK WAS LAUNCHED TO 5018 02:58:45,000 --> 02:58:46,440 ENHANCE THE CONDUCT OF CLINICAL 5019 02:58:46,440 --> 02:58:47,280 RESEARCH FOR SICKLE CELL 5020 02:58:47,280 --> 02:58:48,400 DISEASE. 5021 02:58:48,400 --> 02:58:49,960 THE NETWORK, WHICH IS JUST ONE 5022 02:58:49,960 --> 02:58:58,240 PART OF THE ARBE ASH RESEARCH 5023 02:58:58,240 --> 02:58:59,040 COLLABORATIVE, FACILITATE 5024 02:58:59,040 --> 02:59:00,080 OPTIMALLY DESIGNED CLINICAL 5025 02:59:00,080 --> 02:59:01,640 RESEARCH TO ADVANCE THE CARE OF 5026 02:59:01,640 --> 02:59:02,520 THOSE LIVING WITH SICKLE CELL 5027 02:59:02,520 --> 02:59:03,080 DISEASE. 5028 02:59:03,080 --> 02:59:07,440 THE NETWORK IS -- SORRY, NEXT 5029 02:59:07,440 --> 02:59:08,440 SLIDE. 5030 02:59:08,440 --> 02:59:09,680 THE NETWORK IS REALLY BUILT ON 5031 02:59:09,680 --> 02:59:10,640 THREE PILLARS. 5032 02:59:10,640 --> 02:59:12,440 FIRST, WE HAVE A COMMUNITY 5033 02:59:12,440 --> 02:59:14,320 CENTERED APPROACH BRINGING THE 5034 02:59:14,320 --> 02:59:15,320 VOICE OF THE SICKLE CELL DISEASE 5035 02:59:15,320 --> 02:59:17,280 COMMUNITY TO THE TABLE, 5036 02:59:17,280 --> 02:59:18,360 LEVERAGING REAL WORLD DATA, 5037 02:59:18,360 --> 02:59:20,320 WHICH YOU'LL HEAR MORE ABOUT 5038 02:59:20,320 --> 02:59:22,880 THROUGH THE DATA HUB, AND THEN 5039 02:59:22,880 --> 02:59:23,880 SUPPORTING SICKLE CELL DISEASE 5040 02:59:23,880 --> 02:59:26,240 RESEARCH BY BRINGING TOGETHER A 5041 02:59:26,240 --> 02:59:30,240 COMMUNITY OF RY RESEARCH-READY 5042 02:59:30,240 --> 02:59:33,160 CLINICAL SITES AND 5043 02:59:33,160 --> 02:59:34,480 INVESTIGATORS, REALLY HELPING TO 5044 02:59:34,480 --> 02:59:35,560 FACILITATE EFFICIENT COORDINATED 5045 02:59:35,560 --> 02:59:39,800 CLINICAL RESEARCH. 5046 02:59:39,800 --> 02:59:42,640 SO LAST YEAR, AT THE NHLBI 5047 02:59:42,640 --> 02:59:44,520 AUGUST MEETING, DR. ABRAMS 5048 02:59:44,520 --> 02:59:46,400 ANNOUNCED THE FIRST 10 CON SORE 5049 02:59:46,400 --> 02:59:48,280 SH THAT HAD BEEN ONBOARDED INTO 5050 02:59:48,280 --> 02:59:48,800 THE NETWORK. 5051 02:59:48,800 --> 02:59:52,520 SO TODAY, WE HAVE 16 ONBOARDED 5052 02:59:52,520 --> 02:59:54,160 CONSORTIA WITH DIRECT 5053 02:59:54,160 --> 02:59:56,480 RELATIONSHIP WITH 16 OF THE HUB 5054 02:59:56,480 --> 02:59:58,360 SITES, AND THROUGH THOSE 16 5055 02:59:58,360 --> 03:00:00,320 ONBOARDED CONSORTIA, THE NETWORK 5056 03:00:00,320 --> 03:00:02,560 HAS RELATIONSHIPS WITH ALMOST 80 5057 03:00:02,560 --> 03:00:04,680 CLINICAL SITES AND APPROXIMATELY 5058 03:00:04,680 --> 03:00:05,640 38,000 CHILDREN AND ADULTS 5059 03:00:05,640 --> 03:00:07,120 LIVING WITH SICKLE CELL DISEASE 5060 03:00:07,120 --> 03:00:09,400 THAT ARE SPREAD IN EIGHT 5061 03:00:09,400 --> 03:00:10,480 GEOGRAPHICALLY DIVERSE AREA THAT 5062 03:00:10,480 --> 03:00:11,680 REPRESENTS A GOOD DEAL OF THE 5063 03:00:11,680 --> 03:00:19,440 SICKLE CELL DISEASE POPULATION. 5064 03:00:19,440 --> 03:00:20,760 SO AS ALSO DISCUSSED IN TALKS 5065 03:00:20,760 --> 03:00:22,000 THIS MORNING, ENSURING THAT 5066 03:00:22,000 --> 03:00:24,600 WE'RE BUILDING THIS NETWORK WITH 5067 03:00:24,600 --> 03:00:25,160 THE SICKLE CELL DISEASE 5068 03:00:25,160 --> 03:00:27,000 COMMUNITY IS FOUNDATIONAL TO OUR 5069 03:00:27,000 --> 03:00:27,240 MISSION. 5070 03:00:27,240 --> 03:00:29,320 AND THE ASH RESEARCH 5071 03:00:29,320 --> 03:00:30,160 COLLABORATIVE SICKLE CELL 5072 03:00:30,160 --> 03:00:33,040 DISEASE COMMUNITY ADVISORY BOARD 5073 03:00:33,040 --> 03:00:35,880 PROGRAM IS REALLY KEY TO THAT 5074 03:00:35,880 --> 03:00:36,360 EFFORT. 5075 03:00:36,360 --> 03:00:38,080 SO ASH RC IS HELPING TO SUPPORT 5076 03:00:38,080 --> 03:00:39,160 THE DEVELOPMENT OF LOCAL 5077 03:00:39,160 --> 03:00:40,280 COMMUNITY ADVISORY BOARDS AT 5078 03:00:40,280 --> 03:00:41,800 EACH OF THE CONSORTIA BROUGHT 5079 03:00:41,800 --> 03:00:43,240 INTO THE NETWORK AND ALSO A 5080 03:00:43,240 --> 03:00:44,200 NATIONAL COMMUNITY ADVISORY 5081 03:00:44,200 --> 03:00:45,520 BOARD WHICH IS MADE UP OF 5082 03:00:45,520 --> 03:00:47,040 REPRESENTATIVES FROM EACH OF 5083 03:00:47,040 --> 03:00:48,840 THOSE LOCAL COMMUNITY ADVISORY 5084 03:00:48,840 --> 03:00:50,120 BOARDS OR CABs. 5085 03:00:50,120 --> 03:00:51,320 BY BRINGING TOGETHER AND 5086 03:00:51,320 --> 03:00:54,080 BRINGING THE COMMUNITY VOICE TO 5087 03:00:54,080 --> 03:00:55,200 THE TABLE IN DISCUSSION ABOUT 5088 03:00:55,200 --> 03:00:56,080 SICKLE CELL DISEASE CLINICAL 5089 03:00:56,080 --> 03:00:57,160 RESEARCH AND ENIMAIJING THAT 5090 03:00:57,160 --> 03:00:58,360 COMMUNITY EARLY AND OFTEN 5091 03:00:58,360 --> 03:00:59,840 THROUGHOUT THE ENTIRE RESEARCH 5092 03:00:59,840 --> 03:01:01,120 PROCESS, WE CAN ENSURE THAT 5093 03:01:01,120 --> 03:01:02,920 WE'RE ASSESSING THE PRIORITIES 5094 03:01:02,920 --> 03:01:05,040 OF THE COMMUNITY WITH REGARDS TO 5095 03:01:05,040 --> 03:01:06,600 RESEARCH, GAIN COMMUNITY INPUT 5096 03:01:06,600 --> 03:01:08,000 TO IDENTIFY AND ADDRESS BARRIERS 5097 03:01:08,000 --> 03:01:09,680 TO RESEARCH PARTICIPATION 5098 03:01:09,680 --> 03:01:12,160 ASSOCIATED WITH STUDY DESIGN, 5099 03:01:12,160 --> 03:01:13,720 PROMOTE KNOWLEDGE AND COCREATE 5100 03:01:13,720 --> 03:01:17,000 EDUCATIONAL RESOURCES WITHIN THE 5101 03:01:17,000 --> 03:01:17,920 COMMUNITY TO ADDRESS CONCERNS 5102 03:01:17,920 --> 03:01:19,400 AND QUESTIONS ABOUT RESEARCH 5103 03:01:19,400 --> 03:01:21,920 THAT CAN THEN BE DISSEMINATED 5104 03:01:21,920 --> 03:01:23,040 BEYOND THESE LOCAL COMMUNITY 5105 03:01:23,040 --> 03:01:24,080 ADVISORY BOARDS TO THE BROADER 5106 03:01:24,080 --> 03:01:25,200 SICKLE CELL DISEASE COMMUNITY, 5107 03:01:25,200 --> 03:01:27,840 AND TO REALLY DESIM NATE 5108 03:01:27,840 --> 03:01:28,680 INFORMATION ABOUT RESEARCH 5109 03:01:28,680 --> 03:01:33,560 OPPORTUNITIES AND OUTCOMES. 5110 03:01:33,560 --> 03:01:34,880 MY EXPERIENCE AND I SUSPECT THAT 5111 03:01:34,880 --> 03:01:36,160 OF MANY OF US ON THIS CALL IS 5112 03:01:36,160 --> 03:01:37,920 THE PERCEPTION OF PERSONS LIVING 5113 03:01:37,920 --> 03:01:38,520 WITH SICKLE CELL DISEASE ARE 5114 03:01:38,520 --> 03:01:39,240 UNWILLING TO PARTICIPATE IN 5115 03:01:39,240 --> 03:01:41,640 RESEARCH IS GREATLY EXAGGERATED. 5116 03:01:41,640 --> 03:01:42,760 THE SICKLE CELL DISEASE 5117 03:01:42,760 --> 03:01:44,040 COMMUNITY IS VERY MUCH 5118 03:01:44,040 --> 03:01:45,120 INTERESTED IN PARTICIPATING IN 5119 03:01:45,120 --> 03:01:46,680 THE RESEARCH PROCESS AND 5120 03:01:46,680 --> 03:01:47,560 CONTRIBUTING TO THE KNOWLEDGE 5121 03:01:47,560 --> 03:01:50,440 THAT WILL IMPROVE THEIR LIVES 5122 03:01:50,440 --> 03:01:51,840 AND LIVES OF OTHERS LIVING WITH 5123 03:01:51,840 --> 03:01:52,400 SICKLE CELL DISEASE. 5124 03:01:52,400 --> 03:01:55,160 WE JUST NEED TO EMPOWER THE 5125 03:01:55,160 --> 03:01:56,200 COMMUNITY, ENGAGE THEM WITHIN 5126 03:01:56,200 --> 03:01:57,280 THE RESEARCH PROCESS, INCLUDE 5127 03:01:57,280 --> 03:01:59,800 THEM IN THE RESEARCH PROCESS AND 5128 03:01:59,800 --> 03:02:00,880 NORMALIZE CONVERSATIONS AROUND 5129 03:02:00,880 --> 03:02:08,000 RESEARCH. 5130 03:02:08,000 --> 03:02:09,120 SO ASH RESEARCH COLLABORATIVE IS 5131 03:02:09,120 --> 03:02:10,200 WORKING TO SUPPORT THE SICKLE 5132 03:02:10,200 --> 03:02:11,520 CELL DISEASE COMMUNITY AND OUR 5133 03:02:11,520 --> 03:02:15,680 RESEARCH SITES TO BUILD A STRONG 5134 03:02:15,680 --> 03:02:16,560 CTN INFRASTRUCTURE THAT WILL 5135 03:02:16,560 --> 03:02:17,560 ACCELERATE AND SUPPORT SICKLE 5136 03:02:17,560 --> 03:02:18,320 CELL DISEASE RESEARCH. 5137 03:02:18,320 --> 03:02:21,520 SOME OF THAT SUPPORT INCLUDES 5138 03:02:21,520 --> 03:02:24,160 PROVIDING FINANCIAL SUPPORT TO 5139 03:02:24,160 --> 03:02:25,800 THE HUB SITE FOR A DEDICATED 5140 03:02:25,800 --> 03:02:27,080 STUDY COORDINATOR AND FOR THAT 5141 03:02:27,080 --> 03:02:29,080 LOCAL COMMUNITY ADVISORY BOARD 5142 03:02:29,080 --> 03:02:29,440 DEVELOPMENT. 5143 03:02:29,440 --> 03:02:32,240 TO HELP TO IMPROVE STUDY STARTUP 5144 03:02:32,240 --> 03:02:33,240 EFFICIENCY, SITES WITHIN THE 5145 03:02:33,240 --> 03:02:35,320 NETWORK HAVE ACCESS TO A CENTRAL 5146 03:02:35,320 --> 03:02:37,720 IRB, THE WESTERN CAPERNICUS 5147 03:02:37,720 --> 03:02:39,480 GROUP, AND A NETWORK LEVEL 5148 03:02:39,480 --> 03:02:41,360 ELECTRONIC TRIAL MASTER FILE IS 5149 03:02:41,360 --> 03:02:42,560 CURRENTLY BEING POPULATED TO 5150 03:02:42,560 --> 03:02:44,320 STANDARDIZE AND FACILITATE STUDY 5151 03:02:44,320 --> 03:02:45,560 LEVEL ESSENTIAL DOCUMENT 5152 03:02:45,560 --> 03:02:46,120 COLLECTION. 5153 03:02:46,120 --> 03:02:48,040 WE'RE CONNECTING INDUSTRY AND 5154 03:02:48,040 --> 03:02:49,800 OTHER INVESTIGATORS TO KEY 5155 03:02:49,800 --> 03:02:51,080 OPINION LEADERS WITHIN THE 5156 03:02:51,080 --> 03:02:52,800 SICKLE CELL DISEASE CLINICIAN 5157 03:02:52,800 --> 03:02:53,960 AND RESEARCH COMMUNITY AS WELL 5158 03:02:53,960 --> 03:02:55,720 AS WITH OUR NATIONAL COMMUNITY 5159 03:02:55,720 --> 03:02:57,160 ADVISORY BOARDS FOR COMMUNITY 5160 03:02:57,160 --> 03:03:00,240 INPUT AND PROTOCOL REVIEWS. 5161 03:03:00,240 --> 03:03:01,360 IN ADDITION TO SUPPORTING THE 5162 03:03:01,360 --> 03:03:03,320 PIPELINE OF NEW THERAPEUTICS FOR 5163 03:03:03,320 --> 03:03:03,960 TREATMENT OF SICKLE CELL 5164 03:03:03,960 --> 03:03:06,040 DISEASE, WE REALLY HOPE THAT THE 5165 03:03:06,040 --> 03:03:07,480 RESEARCH INFRASTRUCTURE WE'RE 5166 03:03:07,480 --> 03:03:11,200 BUILDING AS PART OF THE CLINICAL 5167 03:03:11,200 --> 03:03:14,000 TRIALS NETWORK WILL BE USED TO 5168 03:03:14,000 --> 03:03:15,520 SUPPORT COLLABORATIVE AND 5169 03:03:15,520 --> 03:03:16,920 INVESTIGATOR LED RESEARCH ABOUT 5170 03:03:16,920 --> 03:03:18,440 SICKLE CELL DISEASE WE'VE BEEN 5171 03:03:18,440 --> 03:03:19,040 HEARING ABOUT OVER THE LAST 5172 03:03:19,040 --> 03:03:20,440 COUPLE DAYS AND WE LOOK FORWARD 5173 03:03:20,440 --> 03:03:21,200 TO FURTHER DISCUSSIONS. 5174 03:03:21,200 --> 03:03:27,000 I'M TURNI'LL TURN IT OVER NOW TY 5175 03:03:27,000 --> 03:03:31,600 COLLEAGUE, KATHLEEN HEWITT. 5176 03:03:31,600 --> 03:03:32,840 >> HI, EVERYONE. 5177 03:03:32,840 --> 03:03:34,600 SPECIAL THANK YOU TO DRS. ABRAMS 5178 03:03:34,600 --> 03:03:35,840 AND THOMPSON FOR COORDINATING 5179 03:03:35,840 --> 03:03:37,520 THIS SESSION AND TO MY FELLOW 5180 03:03:37,520 --> 03:03:40,280 COLLEAGUES AND ALSO TO NHLBI FOR 5181 03:03:40,280 --> 03:03:44,040 HAVING US TODAY. 5182 03:03:44,040 --> 03:03:45,960 IT'S MY PLEASURE TO SHARE A 5183 03:03:45,960 --> 03:03:47,120 LITTLE ABOUT THE DATA HUB 5184 03:03:47,120 --> 03:03:49,600 PROGRAM AND THEN I WILL HAND IT 5185 03:03:49,600 --> 03:03:51,560 OVER TO EMILY TUCKER WHO'S GOING 5186 03:03:51,560 --> 03:03:52,560 TO TALK SPECIFICALLY ABOUT SOME 5187 03:03:52,560 --> 03:03:54,000 OF OUR REAL WORLD DATA 5188 03:03:54,000 --> 03:03:57,760 INITIATIVES. 5189 03:03:57,760 --> 03:03:58,960 SO TO SORT OF LEVEL THE PLAYING 5190 03:03:58,960 --> 03:04:00,960 FIELD FOR EVERYONE, IF YOU ARE 5191 03:04:00,960 --> 03:04:02,560 AWARE OF THE DATA HUB, I KNOW 5192 03:04:02,560 --> 03:04:03,880 BECAUSE I RECOGNIZE YOUR FACES 5193 03:04:03,880 --> 03:04:05,760 AND YOUR NAMES, OTHERS MAY NOT 5194 03:04:05,760 --> 03:04:09,480 BE SO MUCH. 5195 03:04:09,480 --> 03:04:13,080 IF YOU THINK WITH ABOUT THE DA, 5196 03:04:13,080 --> 03:04:14,640 ONE OF THE AREAS TO CONSIDER IS 5197 03:04:14,640 --> 03:04:15,600 REAL WORLD DATA. 5198 03:04:15,600 --> 03:04:17,040 MANY OF US IN THE RESEARCH FIELD 5199 03:04:17,040 --> 03:04:19,040 ARE PROBABLY ALREADY INVOLVED OR 5200 03:04:19,040 --> 03:04:21,440 BECOMING INVOLVED WITH 5201 03:04:21,440 --> 03:04:22,320 UNDERSTANDING THE IMPORTANCE OF 5202 03:04:22,320 --> 03:04:23,920 HOW REAL WORLD DATA CAN HELP TO 5203 03:04:23,920 --> 03:04:27,920 SUPPORT GENERATION OF REAL WORLD 5204 03:04:27,920 --> 03:04:28,640 EVIDENCE. 5205 03:04:28,640 --> 03:04:29,960 BUT THERE ARE OTHER USES AS WELL 5206 03:04:29,960 --> 03:04:32,600 SO WHY IS THE DATA HUB OF VALUE, 5207 03:04:32,600 --> 03:04:34,360 WHY DID ASH INVEST IN BUILDING 5208 03:04:34,360 --> 03:04:36,000 AN INFRASTRUCTURE TO SUPPORT IT? 5209 03:04:36,000 --> 03:04:38,840 THIS DIAGRAM HERE RUNS 5210 03:04:38,840 --> 03:04:40,080 THROUGH -- AND I'LL JUST RUN 5211 03:04:40,080 --> 03:04:41,400 THROUGH IT FAIRLY QUICKLY, BUT 5212 03:04:41,400 --> 03:04:43,800 SO YOU CAN THINK ABOUT USING 5213 03:04:43,800 --> 03:04:45,320 THAT DATA FOR RETROSPECTIVE 5214 03:04:45,320 --> 03:04:47,720 RESEARCH USING IT FOR ANALYSIS, 5215 03:04:47,720 --> 03:04:50,240 UNDERSTANDING, DOING PRAGMATIC 5216 03:04:50,240 --> 03:04:51,280 CLINICAL TRIALS AND 5217 03:04:51,280 --> 03:04:51,880 UNDERSTANDING WHAT'S HAPPENING 5218 03:04:51,880 --> 03:04:54,320 IN THE REAL WORLD TO HELP 5219 03:04:54,320 --> 03:04:55,520 IDENTIFY CLINICAL AREAS THAT 5220 03:04:55,520 --> 03:04:59,720 MIGHT NEED SOME ATTENTION AS 5221 03:04:59,720 --> 03:05:00,920 WELL AS QUALITY IMPROVEMENT. 5222 03:05:00,920 --> 03:05:02,880 ANOTHER IS TO NEST STUDIES. 5223 03:05:02,880 --> 03:05:04,640 WHAT WE MEAN BY THAT IS, BY 5224 03:05:04,640 --> 03:05:06,280 USING THE DATA THAT WE'RE 5225 03:05:06,280 --> 03:05:07,680 CAPTURING FROM THE SITES WHO ARE 5226 03:05:07,680 --> 03:05:11,800 PARTICIPATING IN THE DATA HUB 5227 03:05:11,800 --> 03:05:13,760 PROGRAM, THAT GIVES US A LARGE 5228 03:05:13,760 --> 03:05:14,600 BREADTH OF INFORMATION ABOUT 5229 03:05:14,600 --> 03:05:15,720 PEOPLE LIVING WITH SICKLE CELL 5230 03:05:15,720 --> 03:05:18,600 DISEASE, BUT TO EXECUTE CERTAIN 5231 03:05:18,600 --> 03:05:20,960 PROSPECTIVE CLINICAL STUDY, 5232 03:05:20,960 --> 03:05:21,960 ADDITIONAL DATA MAY BE NEEDED. 5233 03:05:21,960 --> 03:05:24,720 SO WHEN WE NEST A STUDY WITHIN 5234 03:05:24,720 --> 03:05:25,840 THE DATA HUB, WE WOULD USE THE 5235 03:05:25,840 --> 03:05:27,360 REAL WORLD DATA BUT ALSO AUGMENT 5236 03:05:27,360 --> 03:05:30,400 THAT WITH PROSPECTIVE MORE 5237 03:05:30,400 --> 03:05:30,960 MANUAL DATA COLLECTION. 5238 03:05:30,960 --> 03:05:32,640 I A 'NOTHER FOCUS AREA IS USING 5239 03:05:32,640 --> 03:05:35,280 THE DATA FOR LOCAL AND NATIONAL 5240 03:05:35,280 --> 03:05:36,040 QUALITY IMPROVEMENT. 5241 03:05:36,040 --> 03:05:38,360 AND WE HAVE A LEARNING COMMUNITY 5242 03:05:38,360 --> 03:05:39,680 WHICH WILL BE TALKED ABOUT IN A 5243 03:05:39,680 --> 03:05:44,520 LITTLE BIT BY DR. ALEXIS 5244 03:05:44,520 --> 03:05:46,040 THOMPSON TO LEARN HOW THESE DATA 5245 03:05:46,040 --> 03:05:50,520 ARE BEING USED TO COORDINATE -- 5246 03:05:50,520 --> 03:05:51,840 THEY COULD ANALYZE AND SEE WHERE 5247 03:05:51,840 --> 03:05:54,680 THEY MIGHT HAVE GAPS IN 5248 03:05:54,680 --> 03:05:55,480 OPPORTUNITIES TO IMPROVE, THEY 5249 03:05:55,480 --> 03:05:57,440 WILL HAVE THEIR OWN LOCAL FOCUS 5250 03:05:57,440 --> 03:05:57,880 AREAS. 5251 03:05:57,880 --> 03:05:59,960 AND THOSE FOCUS AREAS THEN WILL 5252 03:05:59,960 --> 03:06:01,720 INFORM CLINICAL PRACTICE. 5253 03:06:01,720 --> 03:06:05,840 AND THINKING ABOUT WAYS IN WHICH 5254 03:06:05,840 --> 03:06:07,000 THE WAY CLINICIANS ARE 5255 03:06:07,000 --> 03:06:08,560 APPROACHING CLINICAL PRACTICE 5256 03:06:08,560 --> 03:06:10,080 LEARNING FROM EACH OTHER, ALSO 5257 03:06:10,080 --> 03:06:12,280 LEARNING FROM THOSE WHO ARE 5258 03:06:12,280 --> 03:06:13,600 PARTICIPATING IN THE DATA HUB 5259 03:06:13,600 --> 03:06:17,640 PROGRAM AND OTHER -- IN OTHER 5260 03:06:17,640 --> 03:06:18,480 INSTITUTIONS. 5261 03:06:18,480 --> 03:06:20,200 ALSO THE DATA HUB IS 5262 03:06:20,200 --> 03:06:22,600 MULTI-STAKEHOLDER, SO WHILE MANY 5263 03:06:22,600 --> 03:06:24,440 OF OUR COMMITTEE MEMBERS DO 5264 03:06:24,440 --> 03:06:29,640 REPRESENT THOSE THAT HAVE SICKLE 5265 03:06:29,640 --> 03:06:30,680 CELL CLINICAL EXPERTISE BUT THEY 5266 03:06:30,680 --> 03:06:31,880 ARE IMPLEMENTATION SCIENTISTS, 5267 03:06:31,880 --> 03:06:33,320 THEY ARE PSYCHOLOGIST, THEY ALSO 5268 03:06:33,320 --> 03:06:35,800 ARE MEMBERS OF THE SICKLE CELL 5269 03:06:35,800 --> 03:06:36,880 DISEASE COMMUNITY, THEY 5270 03:06:36,880 --> 03:06:38,880 REPRESENT INDUSTRY, THEY WORK 5271 03:06:38,880 --> 03:06:42,560 WITH FEDERAL AGENCIES, NHLBI 5272 03:06:42,560 --> 03:06:45,760 BEING ONE OF THEM BUT ALSO FDA, 5273 03:06:45,760 --> 03:06:46,400 HHS, OFFICE OF MINORITY HEALTH, 5274 03:06:46,400 --> 03:06:52,480 AND WE ALSO HAVE SOME MEMBER 5275 03:06:52,480 --> 03:06:54,440 FROM CDC WHO PARTICIPATE IN THE 5276 03:06:54,440 --> 03:06:55,080 WORK. 5277 03:06:55,080 --> 03:06:58,200 AND NETWORK, BRING TOGETHER 5278 03:06:58,200 --> 03:06:59,040 REPRESENTATIVES ACROSS ALL OF 5279 03:06:59,040 --> 03:07:00,160 THESE DIFFERENT STAKEHOLDER 5280 03:07:00,160 --> 03:07:01,360 AVENUES AND TALKING ABOUT AND 5281 03:07:01,360 --> 03:07:02,800 BRINGING TO THE HIGHEST LEVEL 5282 03:07:02,800 --> 03:07:04,680 WHAT THE NEEDS ARE FOR OUR 5283 03:07:04,680 --> 03:07:05,880 PATIENTS WITH SICKLE CELL 5284 03:07:05,880 --> 03:07:06,960 DISEASE BUT THROUGH THE DATA 5285 03:07:06,960 --> 03:07:08,720 HUB, TRYING TO CAPTURE AS MUCH 5286 03:07:08,720 --> 03:07:12,040 DATA AS WE CAN TO HELP INFORM US 5287 03:07:12,040 --> 03:07:13,160 HOW CARE IS BEING PROVIDED 5288 03:07:13,160 --> 03:07:15,560 ACROSS THE U.S. 5289 03:07:15,560 --> 03:07:17,200 SO KEEPING ALL OF THAT IN MIND 5290 03:07:17,200 --> 03:07:20,280 AND IF I JUST DRAW YOUR EYES TO 5291 03:07:20,280 --> 03:07:21,600 THE RIGHT, REALLY EVERYTHING 5292 03:07:21,600 --> 03:07:22,680 DRILLS DOWN TO TWO THINGS. 5293 03:07:22,680 --> 03:07:23,920 ONE IS USING THE DATA FOR 5294 03:07:23,920 --> 03:07:25,320 RESEARCH AND THE OTHER IS TO 5295 03:07:25,320 --> 03:07:26,840 ENHANCE CLINICAL CARE AND DOING 5296 03:07:26,840 --> 03:07:29,640 QUALITY IMPROVEMENT. 5297 03:07:29,640 --> 03:07:30,840 SO NOW IF I CAN DRAW YOUR EYES 5298 03:07:30,840 --> 03:07:31,920 BACK OVER TO THE LEFT, WE START 5299 03:07:31,920 --> 03:07:34,880 WITH PEOPLE LIVING WITH SICKLE 5300 03:07:34,880 --> 03:07:36,120 CELL DISEASE. 5301 03:07:36,120 --> 03:07:37,200 THOSE PATIENTS HAVING THEIR DATA 5302 03:07:37,200 --> 03:07:39,280 THAT'S BEING CAPTURED IN 5303 03:07:39,280 --> 03:07:40,480 ELECTRONIC HEALTH RECORDS TO BE 5304 03:07:40,480 --> 03:07:43,240 SUBMITTED TO THE DATA HUB. 5305 03:07:43,240 --> 03:07:45,440 NOW WE ARE LOOKING AT OTHER DATA 5306 03:07:45,440 --> 03:07:48,760 SOURCES TO CREATE A 360 DEGREE 5307 03:07:48,760 --> 03:07:50,160 VIEW OF PATIENTS BECAUSE 5308 03:07:50,160 --> 03:07:51,360 OBVIOUSLY THE ELECTRONIC HEALTH 5309 03:07:51,360 --> 03:07:53,120 RECORD DATA WHILE IT HAS A LOT 5310 03:07:53,120 --> 03:07:55,840 AND PROBABLY SOME OF THE MOST 5311 03:07:55,840 --> 03:07:57,040 INFORMATION ABOUT PATIENTS, IT 5312 03:07:57,040 --> 03:08:00,680 ALSO IS NOT 100% COMPREHENSIVE. 5313 03:08:00,680 --> 03:08:04,400 BUT RIGHT NOW OUR FOCUS IS 5314 03:08:04,400 --> 03:08:05,680 STARTING ON THE ELECTRONIC 5315 03:08:05,680 --> 03:08:06,080 HEALTH RECORD. 5316 03:08:06,080 --> 03:08:07,480 AS THOSE DATA DO COME OVER TO 5317 03:08:07,480 --> 03:08:09,040 US, WE THEN HAVE COMMITTEES AND 5318 03:08:09,040 --> 03:08:09,960 STRUCTURES THAT ARE HELPING TO 5319 03:08:09,960 --> 03:08:11,480 FIGURE OUT HOW DO WE BEST 5320 03:08:11,480 --> 03:08:13,320 ANALYZE AND MAKE THAT DATA 5321 03:08:13,320 --> 03:08:15,040 AVAILABLE FOR RESEARCH AS WELL 5322 03:08:15,040 --> 03:08:18,520 AS QUALITY IMPROVEMENT. 5323 03:08:18,520 --> 03:08:20,520 SO HERE YOU'LL SEE A PICTURE 5324 03:08:20,520 --> 03:08:21,920 THAT'S SORT OF SYNONYMOUS WITH 5325 03:08:21,920 --> 03:08:23,880 THE ONE THAT NICOLE SHARED WITH 5326 03:08:23,880 --> 03:08:25,480 YOU. 5327 03:08:25,480 --> 03:08:27,600 THIS ONE IDENTIFIES THE 37 SITES 5328 03:08:27,600 --> 03:08:29,600 THAT ARE CURRENTLY PARTICIPATING 5329 03:08:29,600 --> 03:08:30,360 IN THE DATA HUB. 5330 03:08:30,360 --> 03:08:32,560 ALL OF THESE SITES ARE ALSO 5331 03:08:32,560 --> 03:08:33,800 ASSOCIATED WITH THE CLINICAL 5332 03:08:33,800 --> 03:08:35,280 TRIALS NETWORK. 5333 03:08:35,280 --> 03:08:36,840 WE HAVE SENT OUT AND ARE IN THE 5334 03:08:36,840 --> 03:08:42,520 PROCESS OF ENROLLING OUR NEXT 5335 03:08:42,520 --> 03:08:44,640 20, BUT FOR THESE 30 YOU SEE 5336 03:08:44,640 --> 03:08:46,800 HERE, IT COVERS APPROXIMATELY 5337 03:08:46,800 --> 03:08:47,720 25,000 PATIENTS ACROSS ALL OF 5338 03:08:47,720 --> 03:08:48,800 THESE INSTITUTIONS. 5339 03:08:48,800 --> 03:08:50,760 AND OF THOSE THAT ARE ACTIVELY 5340 03:08:50,760 --> 03:08:52,720 SUBMITTING DATA ON -- AT LEAST 5341 03:08:52,720 --> 03:08:54,200 ON A QUARTERLY BASIS WHICH IS 5342 03:08:54,200 --> 03:08:56,040 REQUIRED TO, MANY HAVE SELECTED 5343 03:08:56,040 --> 03:09:00,000 TO SUBMIT DATA MONTHLY, WE HAVE 5344 03:09:00,000 --> 03:09:01,440 10,000 PATIENTS SO FAR THAT HAVE 5345 03:09:01,440 --> 03:09:03,000 BEEN SUBMITTED TO THE DATA HUB. 5346 03:09:03,000 --> 03:09:06,200 AND THE REMAINING SITES ARE 5347 03:09:06,200 --> 03:09:07,720 WORKING ON THEIR DATA 5348 03:09:07,720 --> 03:09:08,480 SUBMISSIONS AND GOING THROUGH 5349 03:09:08,480 --> 03:09:09,360 TEST PROCESSES. 5350 03:09:09,360 --> 03:09:11,440 WHILE WE ANTICIPATE THAT WHEN WE 5351 03:09:11,440 --> 03:09:12,920 GET THROUGH TO THE -- THANK YOU 5352 03:09:12,920 --> 03:09:14,200 VERY MUCH FOR THE CLAP. 5353 03:09:14,200 --> 03:09:16,600 WE ANTICIPATE THAT AS WE GET 5354 03:09:16,600 --> 03:09:18,600 THROUGH THE NEXT COUPLE OF 5355 03:09:18,600 --> 03:09:19,720 COHORTS THAT WE'LL BE INVITING 5356 03:09:19,720 --> 03:09:21,440 TO THE DATA HUB TO HAVE AT LEAST 5357 03:09:21,440 --> 03:09:23,880 ONE HALF OF ALL OF THE U.S. 5358 03:09:23,880 --> 03:09:26,120 POPULATION FOR SICKLE CELL 5359 03:09:26,120 --> 03:09:30,760 DISEASE, OUR INTEND INTENT IS NO 5360 03:09:30,760 --> 03:09:34,200 STOP THERE, OUR INTENT IS TO 5361 03:09:34,200 --> 03:09:35,280 HAVE A FULLY REPRESENTATIVE KAY 5362 03:09:35,280 --> 03:09:40,680 TA BDATABASE THAT ENCOMPASSES AR 5363 03:09:40,680 --> 03:09:42,440 MOST ALL OF THOSE WITH SICKLE 5364 03:09:42,440 --> 03:09:43,240 CELL DISEASE. 5365 03:09:43,240 --> 03:09:44,720 OUR DATA GOES BACK TO 2015. 5366 03:09:44,720 --> 03:09:46,320 WE SELECTED THAT DATE BECAUSE 5367 03:09:46,320 --> 03:09:48,200 THERE WERE SOME MEANINGFUL USE 5368 03:09:48,200 --> 03:09:49,480 MEASURES THAT WERE PUT INTO 5369 03:09:49,480 --> 03:09:51,120 PLACE THAT MADE IT MOST LIKELY 5370 03:09:51,120 --> 03:09:54,760 THAT INSTITUTIONS THAT HAVE 5371 03:09:54,760 --> 03:09:58,800 STARTED TO CAPTURE DATA FROM 5372 03:09:58,800 --> 03:09:59,800 ELECTRONIC HEALTH RECORDS IF 5373 03:09:59,800 --> 03:10:01,040 THEY HADN'T PRIOR. 5374 03:10:01,040 --> 03:10:02,240 THEY GO ALL THE WAY BACK TO 5375 03:10:02,240 --> 03:10:03,760 2015, CAPTURE EVERY PATIENT UP 5376 03:10:03,760 --> 03:10:05,640 TO THAT CURRENT DAY, AND THEN 5377 03:10:05,640 --> 03:10:07,560 WHEN THEY SUBMIT THE NEXT TIME 5378 03:10:07,560 --> 03:10:09,080 OR EVERY MONTH OR EVERY QUARTER, 5379 03:10:09,080 --> 03:10:11,920 WHATEVER THEY SELECT, WE THEN 5380 03:10:11,920 --> 03:10:13,560 GET THOSE ADDITIONAL PATIENT 5381 03:10:13,560 --> 03:10:15,440 EVENTS THAT HAVE OCCURRED SINCE 5382 03:10:15,440 --> 03:10:16,440 THEIR PRIOR SUBMISSION. 5383 03:10:16,440 --> 03:10:18,840 SO THAT'S WHY THIS DATABASE 5384 03:10:18,840 --> 03:10:22,280 ACTUALLY GROWS VERY, VERY 5385 03:10:22,280 --> 03:10:25,120 QUICKLY. 5386 03:10:25,120 --> 03:10:26,240 THIS NEXT SLIDE HERE IS 5387 03:10:26,240 --> 03:10:27,080 REPRESENTATIVE OF THE TYPES OF 5388 03:10:27,080 --> 03:10:28,880 METRICS THAT WE ARE INITIALLY 5389 03:10:28,880 --> 03:10:29,520 FOCUSING ON. 5390 03:10:29,520 --> 03:10:30,640 OUR SICKLE CELL SUBCOMMITTEE, 5391 03:10:30,640 --> 03:10:34,000 WHICH IS CLAIREED BY DR. ALEXIS 5392 03:10:34,000 --> 03:10:35,760 THOMPSON AND THERE ARE MEMBERS 5393 03:10:35,760 --> 03:10:36,440 WHO ARE PRESENT HERE TODAY THAT 5394 03:10:36,440 --> 03:10:38,200 ARE ON THAT COMMITTEE, THEY 5395 03:10:38,200 --> 03:10:42,120 IDENTIFY THESE METRIC AREAS 5396 03:10:42,120 --> 03:10:43,240 SPECIFICALLY BECAUSE, A, THEY 5397 03:10:43,240 --> 03:10:44,360 ARE CLINICALLY IMPORTANT, BUT 5398 03:10:44,360 --> 03:10:46,000 ALSO, B, WE FELT THEY HAD THE 5399 03:10:46,000 --> 03:10:50,640 BEST CLANBEST CHANCE OF BEING CD 5400 03:10:50,640 --> 03:10:52,680 USING HEALTH RECORD DATA. 5401 03:10:52,680 --> 03:10:54,040 WE RECOGNIZE MANY OF THESE 5402 03:10:54,040 --> 03:10:55,800 METRICS OR SOME OF THEM MAY NEED 5403 03:10:55,800 --> 03:10:56,560 TWEAKING AS WE'RE LOOKING AT 5404 03:10:56,560 --> 03:10:58,960 THEM NOW WITH REAL DATA BEHIND 5405 03:10:58,960 --> 03:10:59,480 THEM. 5406 03:10:59,480 --> 03:11:01,080 BUT THIS IS JUST TO GIVE YOU A 5407 03:11:01,080 --> 03:11:02,640 QUICK BIRD'S-EYE VIEW OF WHERE 5408 03:11:02,640 --> 03:11:04,840 WE'RE INITIALLY FOCUSED, BUT 5409 03:11:04,840 --> 03:11:07,040 CERTAINLY IT'S NOT WHERE WE'RE 5410 03:11:07,040 --> 03:11:07,800 STARTING AND STOPPING. 5411 03:11:07,800 --> 03:11:09,560 THIS IS VERSION 1 OF THE METRICS 5412 03:11:09,560 --> 03:11:11,840 THAT ARE AVAILABLE FOR US TO BE 5413 03:11:11,840 --> 03:11:13,560 ABLE TO ANALYZE AND USE FOR 5414 03:11:13,560 --> 03:11:14,640 RESEARCH. 5415 03:11:14,640 --> 03:11:16,280 FOR RESEARCH, WE CAN CREATE 5416 03:11:16,280 --> 03:11:18,280 OTHER METRICS AND GO BEYOND 5417 03:11:18,280 --> 03:11:20,800 THIS, BUT THESE ARE THE SORT OF 5418 03:11:20,800 --> 03:11:22,080 STANDARDIZED ONES THAT WE'RE 5419 03:11:22,080 --> 03:11:24,280 FOCUSED ON. 5420 03:11:24,280 --> 03:11:25,680 SO THE NEXT FEW SLIDES I'M GOING 5421 03:11:25,680 --> 03:11:26,440 TO SHARE WITH YOU SOME SCREEN 5422 03:11:26,440 --> 03:11:28,400 SHOTS OF WHAT OUR SITES WHO 5423 03:11:28,400 --> 03:11:31,760 PARTICIPATE IN THE DATA HUB HAVE 5424 03:11:31,760 --> 03:11:33,040 ACCESS TO. 5425 03:11:33,040 --> 03:11:33,800 BUT THIS SHOULD ALSO HELP YOU TO 5426 03:11:33,800 --> 03:11:37,080 GET A BETTER SENSE OF THE TYPE 5427 03:11:37,080 --> 03:11:38,280 OF DATA THAT WE HAVE, AND 5428 03:11:38,280 --> 03:11:39,360 QUESTIONS THAT COULD BE 5429 03:11:39,360 --> 03:11:40,560 ADDRESSED AND ANSWERED FOR 5430 03:11:40,560 --> 03:11:43,560 VARIOUS RESEARCH PURPOSES. 5431 03:11:43,560 --> 03:11:47,600 SO FOR EXAMPLE, THIS IS A SITE 5432 03:11:47,600 --> 03:11:49,480 PORTAL, SO EACH SITE THAT 5433 03:11:49,480 --> 03:11:50,680 SUBMITS DATA, THEY HAVE ACCESS 5434 03:11:50,680 --> 03:11:52,440 TO THEIR VERY OWN CONFIDENTIAL 5435 03:11:52,440 --> 03:11:52,880 SITE PORTAL. 5436 03:11:52,880 --> 03:11:54,320 THIS SCREEN SHOT HERE, YOU CAN 5437 03:11:54,320 --> 03:11:56,720 SEE, GOING ACROSS THE TOP, IN 5438 03:11:56,720 --> 03:11:58,200 THOSE LITTLE WHITE BOXES, THERE 5439 03:11:58,200 --> 03:11:59,840 ARE A SERIES OF FILTERS. 5440 03:11:59,840 --> 03:12:01,800 YOU CAN GO AND YOU CAN SELECT, 5441 03:12:01,800 --> 03:12:03,680 OKAY, SHOW ME ALL FEMALES OR 5442 03:12:03,680 --> 03:12:09,280 SHOW ME PATIENTS WHO ARE AGE 12 5443 03:12:09,280 --> 03:12:11,560 TO 16 AND SHOW ME GENOTYPE AND 5444 03:12:11,560 --> 03:12:12,840 IT WILL DRILL DOWN SO ALL OF THE 5445 03:12:12,840 --> 03:12:13,920 METRICS PRESENTED WILL SHOW 5446 03:12:13,920 --> 03:12:15,120 SPECIFICALLY THAT COHORT. 5447 03:12:15,120 --> 03:12:17,320 SO THIS IS THE CLINICAL 5448 03:12:17,320 --> 03:12:18,520 DASHBOARD. 5449 03:12:18,520 --> 03:12:20,320 ALSO GOING ACROSS A LITTLE BIT 5450 03:12:20,320 --> 03:12:21,960 BELOW THAT, YOU'LL SEE WHERE 5451 03:12:21,960 --> 03:12:23,400 THERE ARE DIFFERENT TABLES, SO 5452 03:12:23,400 --> 03:12:26,600 ONE IS THE PARTICIPANT 5453 03:12:26,600 --> 03:12:27,560 CHARACTERISTICS, ACUTE CARE 5454 03:12:27,560 --> 03:12:29,240 EVENT, PHARMACOTHERAPY, 5455 03:12:29,240 --> 03:12:31,000 CEREBRAL, RENAL, AND WE HAVE 5456 03:12:31,000 --> 03:12:32,640 SEVERAL OTHER CATEGORIES WHERE 5457 03:12:32,640 --> 03:12:34,160 THERE ARE A NUMBER OF DIFFERENT 5458 03:12:34,160 --> 03:12:36,880 METRICS THAT ARE PRESENTED. 5459 03:12:36,880 --> 03:12:38,360 AS YOU LOOK AT THESE GRAPHS, 5460 03:12:38,360 --> 03:12:40,440 YOU'LL SEE THAT THERE ARE 5461 03:12:40,440 --> 03:12:41,720 DIFFERENT GRAPHICAL DISPLAYS 5462 03:12:41,720 --> 03:12:43,320 DEPENDING WHAT THE DATA IS THAT 5463 03:12:43,320 --> 03:12:46,160 WE'RE LOOKING AT. 5464 03:12:46,160 --> 03:12:47,320 BUT THIS ONE IN PARTICULAR IS 5465 03:12:47,320 --> 03:12:49,160 JUST SHOWING YOU HOW RESULTS 5466 03:12:49,160 --> 03:12:52,920 HAVE CHANGED FROM OVER TIME, AND 5467 03:12:52,920 --> 03:12:54,320 THIS PARTICULAR EXAMPLE SHOWS 5468 03:12:54,320 --> 03:12:58,800 MAY 2019 TO THE JANUARY 2021, 5469 03:12:58,800 --> 03:12:59,880 AND IT'S A CONTROL CHART, SO 5470 03:12:59,880 --> 03:13:01,240 SITES CAN BE ABLE TO SEE HOW 5471 03:13:01,240 --> 03:13:06,160 THEY'RE DOING BASED ON UPPER AND 5472 03:13:06,160 --> 03:13:08,880 LOWER LIMITS, AND THE LIMITS ARE 5473 03:13:08,880 --> 03:13:11,480 NOTED THERE IN THE LEGEND 5474 03:13:11,480 --> 03:13:14,480 UNDERNEATH THE X LINE AND CAN BE 5475 03:13:14,480 --> 03:13:19,240 TURNED ON AND OFF. 5476 03:13:19,240 --> 03:13:21,000 ONE AREA THAT IS HIGH PRIORITY 5477 03:13:21,000 --> 03:13:22,240 FOR US IS FOCUSING ON DATA 5478 03:13:22,240 --> 03:13:24,840 QUALITY, AND WE HAVE TWO DATA 5479 03:13:24,840 --> 03:13:25,840 QUALITY REPORTS. 5480 03:13:25,840 --> 03:13:27,840 DATA QUALITY LEVEL ONE AND DATA 5481 03:13:27,840 --> 03:13:28,600 QUALITY LEVEL TWO. 5482 03:13:28,600 --> 03:13:30,480 IT'S A WHOLE TALK IN AND OF 5483 03:13:30,480 --> 03:13:31,480 ITSELF BUT I'LL GIVE YOU THE 5484 03:13:31,480 --> 03:13:33,200 HIGHLIGHTS OF IT. 5485 03:13:33,200 --> 03:13:34,360 SO DATA QUALITY LEVEL ONE IS 5486 03:13:34,360 --> 03:13:36,440 WHERE WE FOCUS ON WHEN THE DATA 5487 03:13:36,440 --> 03:13:38,440 SUBMITTED, DOES IT HAVE 5488 03:13:38,440 --> 03:13:39,080 INTEGRITY, ARE ALL THE DATA 5489 03:13:39,080 --> 03:13:40,520 THERE, ARE THE TABLES ORGANIZED 5490 03:13:40,520 --> 03:13:42,280 IN A STRUCTURED WAY. 5491 03:13:42,280 --> 03:13:46,160 WE ALIKE USING OMA, WE ALSO ARE 5492 03:13:46,160 --> 03:13:54,000 ABLE TO UT UTILIZE FIRE DATA, PE 5493 03:13:54,000 --> 03:13:58,720 STARTING TO TEST, BUT LOOKING AT 5494 03:13:58,720 --> 03:13:59,840 THE INTEGRITY OF THE DATA. 5495 03:13:59,840 --> 03:14:00,840 LEVEL 2, WHICH IS AN EXAMPLE 5496 03:14:00,840 --> 03:14:02,600 HERE, IS LOOKING AT THE 5497 03:14:02,600 --> 03:14:04,520 CONSISTENCY, AND IT WILL SHOW 5498 03:14:04,520 --> 03:14:05,680 CERTAIN METRIC RESULTS THAT WERE 5499 03:14:05,680 --> 03:14:07,360 IN THE PRIOR SUBMISSION COMPARED 5500 03:14:07,360 --> 03:14:08,640 TO THE NEW ONE. 5501 03:14:08,640 --> 03:14:11,200 SO IF YOU SEE THE AVERAGE 5502 03:14:11,200 --> 03:14:12,960 PATIENTS PER PROVIDER IS 52 ON 5503 03:14:12,960 --> 03:14:14,160 THAT FIRST SUBMISSION AND THEN 5504 03:14:14,160 --> 03:14:16,360 ALL OF A SUDDEN IT WAS 500 IN 5505 03:14:16,360 --> 03:14:17,800 THE SECOND SUBMISSION, THESE ARE 5506 03:14:17,800 --> 03:14:20,680 TO CREATE HIGHLIGHTS SO THAT THE 5507 03:14:20,680 --> 03:14:22,720 SITES THEMSELVES WHO OWN THESE 5508 03:14:22,720 --> 03:14:24,200 DATA CAN IDENTIFY IF SOMETHING 5509 03:14:24,200 --> 03:14:25,720 LOOKS A LITTLE OFF OR MAKE SURE 5510 03:14:25,720 --> 03:14:30,800 THAT IT LOOKS CORRECT. 5511 03:14:30,800 --> 03:14:33,200 THIS HERE IS AN EXAMPLE OF A 5512 03:14:33,200 --> 03:14:34,560 COHORT FINDER, SO SITES IF THEY 5513 03:14:34,560 --> 03:14:35,600 WANT TO BE ABLE TO DRILL DOWN 5514 03:14:35,600 --> 03:14:38,200 AND FIND A CERTAIN PATIENT 5515 03:14:38,200 --> 03:14:39,720 COHORT PERHAPS FOR A RESEARCH 5516 03:14:39,720 --> 03:14:42,400 STUDY, BUT ALSO PERHAPS IN 5517 03:14:42,400 --> 03:14:44,800 LOOKING AT POTENTIAL GUIDELINE 5518 03:14:44,800 --> 03:14:45,240 TREATMENTS. 5519 03:14:45,240 --> 03:14:47,840 FOR EXAMPLE, IN THE FUTURE, 5520 03:14:47,840 --> 03:14:49,760 THERE SHOULD BE AN UPDATE TO A 5521 03:14:49,760 --> 03:14:50,720 SICKLE CELL DISEASE GUIDELINE 5522 03:14:50,720 --> 03:14:52,720 THAT INDICATES PATIENTS WITH 5523 03:14:52,720 --> 03:14:53,360 CERTAIN CHARACTERISTICS SHOULD 5524 03:14:53,360 --> 03:14:55,840 BE CONSIDERED FOR A NEW THERAPY. 5525 03:14:55,840 --> 03:14:57,160 IN THAT CASE, THE SITE CAN COME 5526 03:14:57,160 --> 03:14:58,480 IN, THEY CAN DRILL DOWN, 5527 03:14:58,480 --> 03:15:00,600 IDENTIFY WHO THAT POTENTIAL 5528 03:15:00,600 --> 03:15:02,440 COHORT MIGHT BE ELIGIBLE FOR 5529 03:15:02,440 --> 03:15:03,960 THAT NEW THERAPY AND IT GIVES 5530 03:15:03,960 --> 03:15:05,160 THEM A LIST QUICKLY OF THOSE 5531 03:15:05,160 --> 03:15:06,400 PATIENTS WHO THEY MIGHT WANT TO 5532 03:15:06,400 --> 03:15:07,200 REACH OUT TO AND HAVE A 5533 03:15:07,200 --> 03:15:13,400 CONVERSATION WITH. 5534 03:15:13,400 --> 03:15:14,960 HERE IS WHERE SITES WILL BE ABLE 5535 03:15:14,960 --> 03:15:16,760 TO MONITOR EVERY SINGLE 5536 03:15:16,760 --> 03:15:17,760 SUBMISSION THEY SEND TO US. 5537 03:15:17,760 --> 03:15:19,520 IT SHOWS THEY'VE RECEIVED IT, 5538 03:15:19,520 --> 03:15:21,640 IT'S IN THE PROCESS OF BEING 5539 03:15:21,640 --> 03:15:22,640 UPDATED AND ONCE THAT DATA IS 5540 03:15:22,640 --> 03:15:24,160 AVAILABLE IN THE DATA HUB AND 5541 03:15:24,160 --> 03:15:26,680 LIVE IN THEIR DASHBOARD. 5542 03:15:26,680 --> 03:15:28,560 AND BY CLICKING ON THE DETAILS, 5543 03:15:28,560 --> 03:15:29,560 THERE'S MANY MORE TECHNICAL 5544 03:15:29,560 --> 03:15:31,000 DETAILS FOR ANYBODY WHO HAS THE 5545 03:15:31,000 --> 03:15:32,000 STOMACH FOR THAT SORT OF 5546 03:15:32,000 --> 03:15:37,080 INFORMATION. 5547 03:15:37,080 --> 03:15:38,600 SO WHILE SEVERAL OF OUR SITES DO 5548 03:15:38,600 --> 03:15:40,360 HAVE ACCESS TO THEIR OWN EHR 5549 03:15:40,360 --> 03:15:43,680 DATA TO USE FOR LOCAL DATA 5550 03:15:43,680 --> 03:15:44,640 ANALYTIC PURPOSES THAT PERHAPS 5551 03:15:44,640 --> 03:15:46,520 GO BEYOND WHAT OUR DASHBOARD IS 5552 03:15:46,520 --> 03:15:49,680 GOING TO AFFORD THEM, THEY CAN 5553 03:15:49,680 --> 03:15:51,160 DOWNLOAD THEIR DATA BACK OUT OF 5554 03:15:51,160 --> 03:15:53,440 THE DATA HUB BUT IN THE FORM OF 5555 03:15:53,440 --> 03:15:55,240 AN ANALYTIC DATASET SO THEY'RE 5556 03:15:55,240 --> 03:15:58,000 NOT GETTING THIS BIG HUGE EHR 5557 03:15:58,000 --> 03:16:00,680 DATA FILE, INSTEAD THEY'RE 5558 03:16:00,680 --> 03:16:02,680 GETTING AN ANALYTIC DATASET THAT 5559 03:16:02,680 --> 03:16:04,480 HAS TAKEN DIFFERENT EHR CODES 5560 03:16:04,480 --> 03:16:05,920 AND ORGANIZED IT IN A WAY THAT 5561 03:16:05,920 --> 03:16:09,040 MAKES IT EASIER TO ANALYZE. 5562 03:16:09,040 --> 03:16:12,960 AND THIS LAST SLIDE HERE, IS TO 5563 03:16:12,960 --> 03:16:15,480 SHOW YOU THAT EACH SITE ALSO CAN 5564 03:16:15,480 --> 03:16:18,080 ADD USERS, SO FOR EACH SITE, 5565 03:16:18,080 --> 03:16:20,160 THERE IS A SITE ADMINISTRATOR, 5566 03:16:20,160 --> 03:16:22,040 AND THEN THEY CAN ADD ADDITIONAL 5567 03:16:22,040 --> 03:16:23,520 PEOPLE AT THEIR INSTITUTION TO 5568 03:16:23,520 --> 03:16:27,440 BE ABLE TO HAVE ONE, TWO OR ALL 5569 03:16:27,440 --> 03:16:29,800 OF THE FEATURES THAT ARE 5570 03:16:29,800 --> 03:16:31,280 AVAILABLE IN THEIR SITE PORTAL. 5571 03:16:31,280 --> 03:16:33,680 SO FOR EXAMPLE, YOU MIGHT 5572 03:16:33,680 --> 03:16:34,800 WANT -- A SITE ADMINISTRATOR 5573 03:16:34,800 --> 03:16:36,440 MIGHT WANT TO HAVE A COMMITTEE 5574 03:16:36,440 --> 03:16:39,320 BE ABLE TO ACCESS THE 5575 03:16:39,320 --> 03:16:40,640 OVERARCHING REPORT, BUT THEY 5576 03:16:40,640 --> 03:16:41,880 DON'T WANT THEM TO BE ABLE TO 5577 03:16:41,880 --> 03:16:43,760 LOOK AT THE DATA SUBMISSIONS TAB 5578 03:16:43,760 --> 03:16:46,920 BECAUSE THAT'S MORE TECHNICAL. 5579 03:16:46,920 --> 03:16:48,800 SO IT JUST ANOTHER NICE FEATURE 5580 03:16:48,800 --> 03:16:50,000 TO MAKE THIS TOOL WORK FOR AS 5581 03:16:50,000 --> 03:16:55,160 MANY PEOPLE AS POSSIBLE AT THEIR 5582 03:16:55,160 --> 03:16:56,160 INSTITUTION. 5583 03:16:56,160 --> 03:16:57,840 SO THAT WAS A BRIEF OVERVIEW OF 5584 03:16:57,840 --> 03:17:00,360 WHY THE DATA EXISTS, WE'RE HERE 5585 03:17:00,360 --> 03:17:01,720 TO FOCUS ON SUPPORTING RESEARCH 5586 03:17:01,720 --> 03:17:03,080 AND QUALITY IMPROVEMENT BY USING 5587 03:17:03,080 --> 03:17:08,080 REAL WORLD DATA AND A OTH OTHERT 5588 03:17:08,080 --> 03:17:12,640 DIEDSTUDIES AS NEEDED, SO THEY N 5589 03:17:12,640 --> 03:17:14,160 SUPPORT THEIR OWN RESEARCH AND 5590 03:17:14,160 --> 03:17:16,240 QUALITY IMPROVEMENT EFFORTS AS 5591 03:17:16,240 --> 03:17:16,960 WELL. 5592 03:17:16,960 --> 03:17:18,160 SO IT'S NOW MY PLEASURE TO HAND 5593 03:17:18,160 --> 03:17:19,760 YOU OVER TO EMILY TUCKER, WHO'S 5594 03:17:19,760 --> 03:17:21,960 GOING TO TALK WITH YOU ABOUT OUR 5595 03:17:21,960 --> 03:17:23,000 REAL WORLD EVIDENCE INITIATIVES 5596 03:17:23,000 --> 03:17:24,040 THAT WE'RE WORKING ON RIGHT NOW 5597 03:17:24,040 --> 03:17:24,520 WITH THE FDA. 5598 03:17:24,520 --> 03:17:28,160 THANK YOU. 5599 03:17:28,160 --> 03:17:30,160 >> THANK YOU, DR. HEWITT. 5600 03:17:30,160 --> 03:17:31,680 THANK YOU FOR THE OPPORTUNITY TO 5601 03:17:31,680 --> 03:17:33,880 SPEAK AT THIS YEAR'S MEETING. 5602 03:17:33,880 --> 03:17:35,160 I'M SENIOR MANAGER FOR EVIDENCE 5603 03:17:35,160 --> 03:17:36,680 DEVELOPMENT WITH THE ASH 5604 03:17:36,680 --> 03:17:37,880 RESEARCH COLLABORATIVE DATA HUB. 5605 03:17:37,880 --> 03:17:39,160 TODAY I'LL COVER HOW WE'RE 5606 03:17:39,160 --> 03:17:40,760 COLLECTING REAL WORLD DATA TO 5607 03:17:40,760 --> 03:17:42,160 GENERATE REAL WORLD EVIDENCE IN 5608 03:17:42,160 --> 03:17:43,920 SUPPORT OF FDA REGULATED 5609 03:17:43,920 --> 03:17:46,960 RESEARCH. 5610 03:17:46,960 --> 03:17:48,160 SO WHAT DOES IT MEAN WHEN WE 5611 03:17:48,160 --> 03:17:50,080 TALK ABOUT REAL WORLD DATA AND 5612 03:17:50,080 --> 03:17:50,760 REAL WORLD EVIDENCE? 5613 03:17:50,760 --> 03:17:52,720 REAL WORLD DATA ARE THE DATA 5614 03:17:52,720 --> 03:17:53,760 RELATING TO PATIENT HEALTH 5615 03:17:53,760 --> 03:17:55,160 STATUS AND THE DELIVERY OF 5616 03:17:55,160 --> 03:17:55,880 HEALTHCARE ROUTINELY COLLECTED 5617 03:17:55,880 --> 03:17:57,960 FROM A VARIETY OF SOURCES SUCH 5618 03:17:57,960 --> 03:17:59,040 AS ELECTRONIC HEALTH RECORDS, 5619 03:17:59,040 --> 03:18:01,440 CLAIMS, AND PATIENT REGISTRIES. 5620 03:18:01,440 --> 03:18:02,760 REAL WORLD EVIDENCE IS THE 5621 03:18:02,760 --> 03:18:03,960 CLINICAL EVIDENCE REGARDING THE 5622 03:18:03,960 --> 03:18:05,120 USAGE AND POTENTIAL BENEFITS 5623 03:18:05,120 --> 03:18:07,640 ORIS BEINGS OF THE MEDICAL 5624 03:18:07,640 --> 03:18:09,120 PRODUCT DERIVED FROM THE 5625 03:18:09,120 --> 03:18:10,280 ANALYSIS OF REAL WORLD DATA. 5626 03:18:10,280 --> 03:18:11,720 REAL WORLD EVIDENCE CAN BE 5627 03:18:11,720 --> 03:18:12,800 GENERATED BY DIFFERENT STUDY 5628 03:18:12,800 --> 03:18:14,960 DESIGNS OR ANALYSES SUCH AS 5629 03:18:14,960 --> 03:18:16,480 RANDOMIZED AND PRAGMATIC TRIALS 5630 03:18:16,480 --> 03:18:21,520 AND OBSERVATIONAL STUDIES. 5631 03:18:21,520 --> 03:18:23,400 SO WHY ARE THESE DEFINITIONS 5632 03:18:23,400 --> 03:18:24,720 IMPORTANT? 5633 03:18:24,720 --> 03:18:27,880 THE DATA HUB IS A MODERN 5634 03:18:27,880 --> 03:18:30,640 PLATFORM THAT FACILITATES THE 5635 03:18:30,640 --> 03:18:33,200 ACQUISITION -- TO CREATE 5636 03:18:33,200 --> 03:18:34,440 RESEARCH GRADE DATA ASSETS AS 5637 03:18:34,440 --> 03:18:36,040 WELL AS ASSESSING OUTCOMES TO 5638 03:18:36,040 --> 03:18:37,440 ENHANCE CARE IN HEMATOLOGY. 5639 03:18:37,440 --> 03:18:39,160 AT THIS TIME, WE ARE PRIMARILY 5640 03:18:39,160 --> 03:18:40,240 COLLECTING ELECTRONIC HEALTH 5641 03:18:40,240 --> 03:18:43,040 RECORD DATA BUT DO HAVE PLANS TO 5642 03:18:43,040 --> 03:18:43,880 COLLECT GENOMIC DATA, 5643 03:18:43,880 --> 03:18:45,680 PATIENT-REPORTED OUTCOMES AND 5644 03:18:45,680 --> 03:18:46,280 CLAIMS DATA. 5645 03:18:46,280 --> 03:18:47,640 OUR PROGRAM LEVERAGES RECENT 5646 03:18:47,640 --> 03:18:50,720 HEALTH IT REGULATORY CHANGES AND 5647 03:18:50,720 --> 03:18:51,720 INTEROPERABILITY ENHANCEMENTS TO 5648 03:18:51,720 --> 03:18:53,160 MAKE IT EASIER AND MORE 5649 03:18:53,160 --> 03:18:54,960 CONSISTENT WITH CLINICAL SITES 5650 03:18:54,960 --> 03:18:55,320 TO PARTICIPATE. 5651 03:18:55,320 --> 03:18:56,720 AS YOU CAN SEE HERE, WE INTEND 5652 03:18:56,720 --> 03:18:58,240 TO SUPPORT A NUMBER OF DIFFERENT 5653 03:18:58,240 --> 03:18:59,560 STAKEHOLDERS SUCH AS OUR PATIENT 5654 03:18:59,560 --> 03:19:00,960 AND COMMUNITY MEMBERS, 5655 03:19:00,960 --> 03:19:02,680 CLINICIANS, RESEARCHERS, AND 5656 03:19:02,680 --> 03:19:07,000 FEDERAL ENTITIES. 5657 03:19:07,000 --> 03:19:08,600 SO WHY ARE WE FOCUSING ON REAL 5658 03:19:08,600 --> 03:19:09,160 WORLD DATA? 5659 03:19:09,160 --> 03:19:11,840 I THINK WE CAN ALL AGREE THAT 5660 03:19:11,840 --> 03:19:12,440 RANDOMIZED CONTROL TRIALS ARE 5661 03:19:12,440 --> 03:19:13,840 THE PREFERRED SOURCE OF EVIDENCE 5662 03:19:13,840 --> 03:19:14,800 WHEN IT COMES TO THE 5663 03:19:14,800 --> 03:19:16,480 EFFECTIVENESS OF INTERVENTIONS 5664 03:19:16,480 --> 03:19:17,280 BUT I THINK WE CAN ALSO AGREE 5665 03:19:17,280 --> 03:19:18,480 THAT THEY ARE NOT REPRESENTATIVE 5666 03:19:18,480 --> 03:19:21,080 OF THE GENERAL POPULATION ORTHOS 5667 03:19:21,080 --> 03:19:24,320 WITH A PARTICULAR DISEASE. 5668 03:19:24,320 --> 03:19:25,080 WHILE THEY ARE A KEY RESEARCH 5669 03:19:25,080 --> 03:19:29,240 TOOL FOR ADVANCING KNOWLEDGE AND 5670 03:19:29,240 --> 03:19:30,680 CARE FOLLOW UP IS LIMITED, 5671 03:19:30,680 --> 03:19:32,240 STUDIES ARE INCREDIBLY EXPENSIVE 5672 03:19:32,240 --> 03:19:33,560 AND IT TAKES A SIGNIFICANT 5673 03:19:33,560 --> 03:19:35,640 AMOUNT OF TIME TO ENROLL AND 5674 03:19:35,640 --> 03:19:36,400 MAINTAIN PATIENTS. 5675 03:19:36,400 --> 03:19:38,000 THIS IS WHERE REAL WORLD DATA 5676 03:19:38,000 --> 03:19:39,640 COMES IN, TO AUGMENT, NOT TO 5677 03:19:39,640 --> 03:19:41,400 REPLACE, HOW WE'RE CONDUCTING 5678 03:19:41,400 --> 03:19:42,920 CLINICAL RESEARCH. 5679 03:19:42,920 --> 03:19:44,000 REAL WORLD DATA CAN BE COLLECTED 5680 03:19:44,000 --> 03:19:46,480 FROM ANY NUMBER OF COHORTS OR 5681 03:19:46,480 --> 03:19:47,280 POPULATION SHOULD BE GROUPS 5682 03:19:47,280 --> 03:19:48,480 ALONG WITH THE EXAMINATION OF 5683 03:19:48,480 --> 03:19:50,160 NEW TREATMENTS IN REAL WORLD 5684 03:19:50,160 --> 03:19:51,600 SETTINGS WHERE PATIENTS' 5685 03:19:51,600 --> 03:19:52,680 BEHAVIOR, CONCURRENT TREATMENTS 5686 03:19:52,680 --> 03:19:54,040 AND ENVIRONMENTAL FACTORS ARE 5687 03:19:54,040 --> 03:19:55,280 NOT INFLUENCED BY PARTICIPATION 5688 03:19:55,280 --> 03:19:56,120 IN A CLINICAL TRIAL. 5689 03:19:56,120 --> 03:19:57,960 BY LEVERAGING THE DATA THAT'S 5690 03:19:57,960 --> 03:19:59,480 ALREADY BEING CAPTURED ROUTINELY 5691 03:19:59,480 --> 03:20:00,680 IN HEALTHCARE, WE'RE ABLE TO 5692 03:20:00,680 --> 03:20:02,560 ASSESS THE IMPACT OF 5693 03:20:02,560 --> 03:20:03,760 INTERVENTIONS, CHARACTERIZE 5694 03:20:03,760 --> 03:20:04,560 HEALTH CONDITION, AND PATIENT 5695 03:20:04,560 --> 03:20:05,960 OUTCOMES, AND IDENTIFY AND 5696 03:20:05,960 --> 03:20:07,440 ADDRESS HEALTH INEQUITIES, ALL 5697 03:20:07,440 --> 03:20:09,760 AT A MUCH LOWER COST. 5698 03:20:09,760 --> 03:20:11,200 NOW, CAPTURING REAL WORLD DATA 5699 03:20:11,200 --> 03:20:13,400 IS GREAT, BUT IT ISN'T ENOUGH. 5700 03:20:13,400 --> 03:20:15,000 WE NEED TO GENERATE EVIDENCE TO 5701 03:20:15,000 --> 03:20:16,400 ENSURE THESE OUTCOMES COME TO 5702 03:20:16,400 --> 03:20:16,640 FRUITION. 5703 03:20:16,640 --> 03:20:18,360 IN THE DRAFT GUIDANCE FDA SHARED 5704 03:20:18,360 --> 03:20:20,040 AROUND THIS TIME LAST YEAR, THE 5705 03:20:20,040 --> 03:20:21,680 AGENCY FOCUSED ON THREE CHAL 5706 03:20:21,680 --> 03:20:23,560 EX-RELATED TO THE USE OF REAL 5707 03:20:23,560 --> 03:20:24,840 WORLD DATA GATHERED FROM 5708 03:20:24,840 --> 03:20:27,240 ELECTRONIC HEALTH RECORDS AND 5709 03:20:27,240 --> 03:20:27,880 CLAIMS. 5710 03:20:27,880 --> 03:20:28,880 INCLUDING THE SELECTION OF DATA 5711 03:20:28,880 --> 03:20:30,120 SOURCES THAT APPROPRIATELY 5712 03:20:30,120 --> 03:20:31,680 ADDRESS THE STUDY QUESTION, 5713 03:20:31,680 --> 03:20:32,880 DEVELOPMENT AND VALIDATION OF 5714 03:20:32,880 --> 03:20:34,720 DEFINITIONS FOR STUDY DESIGN 5715 03:20:34,720 --> 03:20:39,160 ELEMENTS, AND DATA PROVENANCE 5716 03:20:39,160 --> 03:20:42,160 AND QUALITY THROUGHOUT THE 5717 03:20:42,160 --> 03:20:42,600 LIFECYCLE. 5718 03:20:42,600 --> 03:20:43,760 IT'S IMPORTANT TO BE COGNIZANT 5719 03:20:43,760 --> 03:20:45,200 OF THESE TYPES OF INHERENT 5720 03:20:45,200 --> 03:20:46,800 CHALLENGES WHEN USING SUCH DATA 5721 03:20:46,800 --> 03:20:48,000 IN RESEARCH, WHICH IS WHY WE'VE 5722 03:20:48,000 --> 03:20:50,920 BEEN WORKING TOWARDS DEVELOPING 5723 03:20:50,920 --> 03:20:52,040 IMPROVED APPROACHES TO GENERATE 5724 03:20:52,040 --> 03:20:56,800 VALID EVIDENCE. 5725 03:20:56,800 --> 03:20:57,800 FDA'S GUIDANCE MADE IT CLEAR 5726 03:20:57,800 --> 03:21:00,600 THAT THE STRENGTH OF REAL WORLD 5727 03:21:00,600 --> 03:21:01,800 EVIDENCE ES PISHLY IN SUPPORT OF 5728 03:21:01,800 --> 03:21:03,320 A REAL WORLD DECISION IS 5729 03:21:03,320 --> 03:21:06,240 DEPENDENT UPON THE METHODOLOGY, 5730 03:21:06,240 --> 03:21:07,000 RELIABILITY AND EVIDENCE OF THE 5731 03:21:07,000 --> 03:21:07,880 UNDERLYING DATA. 5732 03:21:07,880 --> 03:21:09,520 UNDERSTANDING AND MANAGING THE 5733 03:21:09,520 --> 03:21:11,800 QUALITY OF THE OVERALL DATA IS 5734 03:21:11,800 --> 03:21:12,760 AMBITIOUS, WHICH IS WHY WE 5735 03:21:12,760 --> 03:21:14,080 DEVELOPED A STRATEGY TO SUPPORT 5736 03:21:14,080 --> 03:21:18,800 THE CREATION OF A KR A COMPREHEE 5737 03:21:18,800 --> 03:21:20,040 HIGH QUALITY DATASET. 5738 03:21:20,040 --> 03:21:21,000 FOLLOWING ARE CONSIDERATIONS FOR 5739 03:21:21,000 --> 03:21:22,320 OUR DATA QUALITY STRATEGY. 5740 03:21:22,320 --> 03:21:23,040 THE FIRST IS RELEVANCE. 5741 03:21:23,040 --> 03:21:24,240 DATA SHOULD BE RELEVANT NOT ONLY 5742 03:21:24,240 --> 03:21:27,240 TO THE SITE AND THE PHYSICIAN TO 5743 03:21:27,240 --> 03:21:27,840 ENABLE CONTINUED PARTICIPATION 5744 03:21:27,840 --> 03:21:29,480 IN THE PROGRAM, BUT ALSO TO 5745 03:21:29,480 --> 03:21:30,920 THOSE WHO INTEND TO LEVERAGE THE 5746 03:21:30,920 --> 03:21:32,200 DATA, SUCH AS RESEARCHERS AND 5747 03:21:32,200 --> 03:21:33,880 THE FDA. 5748 03:21:33,880 --> 03:21:37,080 NEXT IS TIMELINESS. 5749 03:21:37,080 --> 03:21:44,480 IT'S IMPERATIVE STAKEHOLDERS 5750 03:21:44,480 --> 03:21:45,960 HAVE -- SUBMIT THEIR DATA ON A 5751 03:21:45,960 --> 03:21:47,840 WEEKLY, MONTHLY OR QUARTERLY 5752 03:21:47,840 --> 03:21:48,680 SCHEDULE. 5753 03:21:48,680 --> 03:21:49,880 THE THIRD IS COMPLETENESS, 5754 03:21:49,880 --> 03:21:52,280 REQUIRING THAT RECORDS BE 5755 03:21:52,280 --> 03:21:54,360 SELECTED WITHOUT GAPS OR 5756 03:21:54,360 --> 03:21:56,440 DUPLICATIVE DATA. 5757 03:21:56,440 --> 03:21:57,640 VALIDITY, A LIST OF RULES, 5758 03:21:57,640 --> 03:21:58,360 REQUIREMENTS AND DEFINITIONS. 5759 03:21:58,360 --> 03:22:00,560 AND LASTLY, CONSISTENCY. 5760 03:22:00,560 --> 03:22:02,480 RECORDS MUST BE ACCURATE AND 5761 03:22:02,480 --> 03:22:03,280 DETAILED FOR ENABLING WELL 5762 03:22:03,280 --> 03:22:05,000 THOUGHT DECISION-MAKING, DATA 5763 03:22:05,000 --> 03:22:07,480 CONSISTENCY ENSURES THAT 5764 03:22:07,480 --> 03:22:08,560 ANALYTICS CORRECTLY CAPTURE AND 5765 03:22:08,560 --> 03:22:10,440 RENCH THE VALUE OF THE DATA. 5766 03:22:10,440 --> 03:22:12,320 WE INTEND TO CONTINUE TO EXPLORE 5767 03:22:12,320 --> 03:22:13,120 STRATEGIES FOR FILLING GAPS IN 5768 03:22:13,120 --> 03:22:14,440 DATA THAT MAY BE DIFFICULT TO 5769 03:22:14,440 --> 03:22:15,400 OBTAIN FROM ELECTRONIC HEALTH 5770 03:22:15,400 --> 03:22:15,960 RECORDS. 5771 03:22:15,960 --> 03:22:18,440 INCLUDING THE USE OF MOBILE 5772 03:22:18,440 --> 03:22:20,400 TECHNOLOGIES, PATIENT-REPORTED 5773 03:22:20,400 --> 03:22:22,080 OUTCOMES, WEARABLES AND LINKING 5774 03:22:22,080 --> 03:22:23,080 TO EXTERNAL DATABASES TO CREATE 5775 03:22:23,080 --> 03:22:24,400 A MORE COMPREHENSIVE PICTURE OF 5776 03:22:24,400 --> 03:22:29,320 PATIENT CARE. 5777 03:22:29,320 --> 03:22:31,040 HERE IS JUST ONE EXAMPLE OF HOW 5778 03:22:31,040 --> 03:22:33,080 WE ARE CONTINUING TO FOCUS ON 5779 03:22:33,080 --> 03:22:34,200 MINIMIZING THE DATA CAPTURE 5780 03:22:34,200 --> 03:22:36,080 BURDEN WHILE CONTINUING TO 5781 03:22:36,080 --> 03:22:38,880 ADDRESS DATA TA QUALITY. 5782 03:22:38,880 --> 03:22:39,400 QUALITY. 5783 03:22:39,400 --> 03:22:41,120 THE DATA WE COLLECT IS 5784 03:22:41,120 --> 03:22:42,640 TRANSFERRED ON A MONTHLY OR 5785 03:22:42,640 --> 03:22:44,840 QUARTERLY BASIS AS I MENTIONED 5786 03:22:44,840 --> 03:22:45,480 EARLIER. 5787 03:22:45,480 --> 03:22:46,920 WE THEN PERFORM A DATA QUALITY 5788 03:22:46,920 --> 03:22:48,520 ASSESSMENT TO IDENTIFY ANY 5789 03:22:48,520 --> 03:22:50,040 ANOMALIES OR MISSING DATA THAT 5790 03:22:50,040 --> 03:22:51,880 MAY EXIST IN THE SUBMISSION AND 5791 03:22:51,880 --> 03:22:55,680 GENERATE A PRE-POPULATED 5792 03:22:55,680 --> 03:22:56,640 ELECTRONIC CASE REPORT THE SITE 5793 03:22:56,640 --> 03:22:57,080 CAN REVIEW. 5794 03:22:57,080 --> 03:22:58,760 THE SITE CAN THEN EASILY ADDRESS 5795 03:22:58,760 --> 03:23:00,000 ANY DISCREPANCIES OR MISSING 5796 03:23:00,000 --> 03:23:01,000 DATA AND RESUBMIT. 5797 03:23:01,000 --> 03:23:03,280 ONCE THIS INFORMATION IS 5798 03:23:03,280 --> 03:23:04,480 RECEIVED, THE DATA HUB NOW 5799 03:23:04,480 --> 03:23:06,400 BECOMES A SOURCE OF TRUTH AND 5800 03:23:06,400 --> 03:23:10,000 THE UPDATED DATA WILL APPEAR ON 5801 03:23:10,000 --> 03:23:11,800 THE DASHBOARD WHERE THEY CAN 5802 03:23:11,800 --> 03:23:13,080 COMPARE OUTCOMES TO THE 5803 03:23:13,080 --> 03:23:14,360 AGGREGATE OF THOSE PARTICIPATING 5804 03:23:14,360 --> 03:23:15,240 IN THE DATA HUB. 5805 03:23:15,240 --> 03:23:16,880 WHILE THERE'S STILL SOME ELEMENT 5806 03:23:16,880 --> 03:23:18,640 OF MANUAL CURATION, WE'RE ABLE 5807 03:23:18,640 --> 03:23:19,800 TO ALLEVIATE THE MAJORITY OF 5808 03:23:19,800 --> 03:23:21,360 THAT EFFORT, LEVERAGING WHAT 5809 03:23:21,360 --> 03:23:25,440 ALREADY LIVES IN A PATIENT'S 5810 03:23:25,440 --> 03:23:26,960 HEALTH RECORD. 5811 03:23:26,960 --> 03:23:28,160 TO AUGMENT OUR EFFORTS IN 5812 03:23:28,160 --> 03:23:29,280 GENERATING REAL WORLD EVIDENCE, 5813 03:23:29,280 --> 03:23:31,200 WE TEAMED UP WITH THE INNOVATIVE 5814 03:23:31,200 --> 03:23:31,880 GENOMICS INSTITUTE IN 5815 03:23:31,880 --> 03:23:33,960 COLLABORATION WITH THE FDA AND 5816 03:23:33,960 --> 03:23:34,760 HOSTED TWO STAKEHOLDER 5817 03:23:34,760 --> 03:23:35,880 ROUNDTABLE MEETINGS TO 5818 03:23:35,880 --> 03:23:37,920 ACCELERATE INNOVATIONS FOR 5819 03:23:37,920 --> 03:23:38,920 SICKLE CELL DISEASE WITH REAL 5820 03:23:38,920 --> 03:23:41,280 WORLD EVIDENCE, WHICH WE OFTEN 5821 03:23:41,280 --> 03:23:44,480 REFER TO AS THE RWE INITIATIVE. 5822 03:23:44,480 --> 03:23:46,120 THE PURPOSE WAS TO EXPLORE A 5823 03:23:46,120 --> 03:23:47,480 NATIONWIDE REAL WORLD DATA 5824 03:23:47,480 --> 03:23:48,560 SYSTEM TO GENERATE EVIDENCE 5825 03:23:48,560 --> 03:23:49,920 FOFER CLINICAL STUDIES REGULATED 5826 03:23:49,920 --> 03:23:50,440 BY THE FDA. 5827 03:23:50,440 --> 03:23:52,800 IN ORDER TO ACCOMPLISH THIS, WE 5828 03:23:52,800 --> 03:23:53,920 LAUNCHED TWO WORKING GROUPS 5829 03:23:53,920 --> 03:23:56,320 FOCUSED ON GENOMIC THERAPIES AND 5830 03:23:56,320 --> 03:23:59,120 COORDINATED REGISTRY NETWORKS. 5831 03:23:59,120 --> 03:24:00,200 THE GENOMIC THERAPIES WORKING 5832 03:24:00,200 --> 03:24:01,520 GROUP SOUGHT TO IDENTIFY DATA 5833 03:24:01,520 --> 03:24:03,000 POINTS THAT SHOULD BE COLLECTED 5834 03:24:03,000 --> 03:24:04,960 TO GENERATE ACTIONABLE, 5835 03:24:04,960 --> 03:24:06,080 REGULATORY GRADE REAL WORLD 5836 03:24:06,080 --> 03:24:07,280 EVIDENCE FOR GENOMIC THERAPIES 5837 03:24:07,280 --> 03:24:09,560 IN SICKLE CELL DISEASE. 5838 03:24:09,560 --> 03:24:11,160 TO MINIMIZE THESE RISKS AND SET 5839 03:24:11,160 --> 03:24:14,240 THE BROADER FIELD FOR LONG TERM 5840 03:24:14,240 --> 03:24:16,080 SUCCESS, COORDINATED EFFORTS 5841 03:24:16,080 --> 03:24:17,360 HELPED IDENTIFY TO ADDRESS 5842 03:24:17,360 --> 03:24:18,160 UNANSWERED QUESTIONS AROUND 5843 03:24:18,160 --> 03:24:20,320 SAFETY AND EFFICACY OF THESE 5844 03:24:20,320 --> 03:24:20,880 THERAPIES, CREATING THE 5845 03:24:20,880 --> 03:24:21,920 OPPORTUNITIES FOR THE DATA 5846 03:24:21,920 --> 03:24:24,320 GENERATED TO IMPACT REGULATORY 5847 03:24:24,320 --> 03:24:25,520 DECISION-MAKING AND ENABLE 5848 03:24:25,520 --> 03:24:27,000 IMPROVEMENTS IN THERAPEUTIC 5849 03:24:27,000 --> 03:24:28,400 DESIGN AND RISK MANAGEMENT. 5850 03:24:28,400 --> 03:24:30,280 THE COORDINATED REGISTRY NETWORK 5851 03:24:30,280 --> 03:24:31,960 WORKING GROUP AIMED TO DISCUSS 5852 03:24:31,960 --> 03:24:34,160 THE ROLE OF COORDINATED REGISTRY 5853 03:24:34,160 --> 03:24:35,880 NETWORKS FOR PATIENT LEVEL DATA 5854 03:24:35,880 --> 03:24:37,320 AGGREGATION BY LINKING 5855 03:24:37,320 --> 03:24:37,960 TRADITIONAL CLINICAL REGISTRIES 5856 03:24:37,960 --> 03:24:40,000 TO OTHER DATA SOURCES. 5857 03:24:40,000 --> 03:24:41,080 COORDINATED REGISTRY NETWORKS 5858 03:24:41,080 --> 03:24:42,600 HAVE THE POTENTIAL TO IMPROVE 5859 03:24:42,600 --> 03:24:44,560 CARE BY BRINGING TOGETHER DATA 5860 03:24:44,560 --> 03:24:46,040 FROM MULTIPLE SOURCES RESULTING 5861 03:24:46,040 --> 03:24:47,880 IN A MORE HOLISTIC, 5862 03:24:47,880 --> 03:24:48,880 COMPREHENSIVE AND COST-EFFECTIVE 5863 03:24:48,880 --> 03:24:50,520 APPROACH TO GENERATING REAL 5864 03:24:50,520 --> 03:24:54,120 WORLD EVIDENCE. 5865 03:24:54,120 --> 03:24:55,760 BOTH WORKING GROUPS INCLUDED A 5866 03:24:55,760 --> 03:24:57,600 DIVERSE GROUP OF STAKEHOLDERS 5867 03:24:57,600 --> 03:24:59,040 INCLUDING FEDERAL ENTITY, 5868 03:24:59,040 --> 03:25:00,440 SCIENTISTS, PAYERS, SICKLE CELL 5869 03:25:00,440 --> 03:25:03,160 DISEASE COMMUNITY MEMBERS AND 5870 03:25:03,160 --> 03:25:03,640 INDUSTRY. 5871 03:25:03,640 --> 03:25:05,200 BY INCLUDING SO MANY DIFFERENT 5872 03:25:05,200 --> 03:25:07,280 GROUPS WE WERE ABLE TO GATHER 5873 03:25:07,280 --> 03:25:08,520 THE NEEDS EACH BROUGHT TO THE 5874 03:25:08,520 --> 03:25:09,560 TABLE WHICH RESULTED IN THE 5875 03:25:09,560 --> 03:25:11,080 CREATION OF TWO REPORTS WHICH 5876 03:25:11,080 --> 03:25:13,600 WILL BE HELPFUL IN GUIDING THE 5877 03:25:13,600 --> 03:25:15,320 DATA HUBS KEY TECHNOLOGY AND 5878 03:25:15,320 --> 03:25:15,840 INFRASTRUCTURE NEEDS AS WE 5879 03:25:15,840 --> 03:25:17,640 CONTINUE TO DEVELOP AND GROW THE 5880 03:25:17,640 --> 03:25:21,120 PROGRAM. 5881 03:25:21,120 --> 03:25:22,520 LASTLY THE REPORTS I JUST 5882 03:25:22,520 --> 03:25:24,840 TOUCHED ON PRODUCED IN THE 5883 03:25:24,840 --> 03:25:25,480 INITIATIVE WILL BE AVAILABLE FOR 5884 03:25:25,480 --> 03:25:26,800 OPEN COMMENT THIS FALL, WHERE WE 5885 03:25:26,800 --> 03:25:28,080 HOPE TO RECEIVE VALUABLE 5886 03:25:28,080 --> 03:25:29,720 FEEDBACK FROM MANY KEY 5887 03:25:29,720 --> 03:25:30,360 STAKEHOLDERS INCLUDING THE 5888 03:25:30,360 --> 03:25:31,760 GENERAL PUBLIC. 5889 03:25:31,760 --> 03:25:33,200 AND WITH THAT, I WILL PASS 5890 03:25:33,200 --> 03:25:36,800 THINGS OVER TO DR.' LEXIS 5891 03:25:36,800 --> 03:25:38,080 THOMPSON, CHIEF OF THE DIVISION 5892 03:25:38,080 --> 03:25:39,560 OF HEMATOLOGY AT CHILDREN'S 5893 03:25:39,560 --> 03:25:40,760 HOSPITAL OF PHILADELPHIA AND 5894 03:25:40,760 --> 03:25:43,240 CHAIR OF OUR SICKLE CELL DISEASE 5895 03:25:43,240 --> 03:25:43,600 SUBCOMMITTEE. 5896 03:25:43,600 --> 03:25:43,840 THANK YOU. 5897 03:25:43,840 --> 03:25:45,120 >> GOOD AFTERNOON OR GOOD 5898 03:25:45,120 --> 03:25:45,960 MORNING FOR MY FRIENDS ON THE 5899 03:25:45,960 --> 03:25:47,640 WEST COAST. 5900 03:25:47,640 --> 03:25:49,120 IT'S REALLY A PRIVILEGE TO BE A 5901 03:25:49,120 --> 03:25:51,320 PART OF THIS PRESENTATION TODAY 5902 03:25:51,320 --> 03:25:54,720 WITH MY COLLEAGUES FROM ASH, AS 5903 03:25:54,720 --> 03:25:56,600 WELL AS FRIENDS AND COMPLETION 5904 03:25:56,600 --> 03:25:57,880 BROADLY IN THE SICKLE CELL 5905 03:25:57,880 --> 03:26:00,840 COMMUNITY. 5906 03:26:00,840 --> 03:26:02,080 I'M GOING TO BE COVERING BRIEFLY 5907 03:26:02,080 --> 03:26:03,800 THE SICKLE CELL LEARNING 5908 03:26:03,800 --> 03:26:05,760 COMMUNITY, AND THIS IS A CONCEPT 5909 03:26:05,760 --> 03:26:07,840 THAT'S NEW TO INDIVIDUALS, I 5910 03:26:07,840 --> 03:26:09,880 JUST WANT TO SHARE SOME CONTEXT. 5911 03:26:09,880 --> 03:26:10,760 THE LEARNING COMMUNITIES WERE 5912 03:26:10,760 --> 03:26:12,400 INITIALLY CALLED LEARNING 5913 03:26:12,400 --> 03:26:14,760 HEALTHCARE SYSTEMS, AND THIS WAS 5914 03:26:14,760 --> 03:26:16,000 INITIALLY ADVOCATED, THIS IDEA 5915 03:26:16,000 --> 03:26:17,720 CAME ABOUT FROM THE NATIONAL 5916 03:26:17,720 --> 03:26:20,960 ACADEMIES OF MEDICINE IN 2007, 5917 03:26:20,960 --> 03:26:22,040 AND SPECIFICALLY THESE LEARNING 5918 03:26:22,040 --> 03:26:27,200 HEALTH SYSTEMS WERE INTENDED TO 5919 03:26:27,200 --> 03:26:29,240 ADVANCE SCIENCE INFORMATICS 5920 03:26:29,240 --> 03:26:30,680 INCENTIVES AND CULTURE ALIGNED 5921 03:26:30,680 --> 03:26:32,880 FOR CONTINUOUS IMPROVEMENT AND 5922 03:26:32,880 --> 03:26:33,400 INNOVATION. 5923 03:26:33,400 --> 03:26:36,760 WITH BEST PRACTICES SEAMLESSLY 5924 03:26:36,760 --> 03:26:38,200 EMBEDDED IN A DELIVERY SYSTEM, 5925 03:26:38,200 --> 03:26:39,520 AND SPECIFICALLY WITH PATIENT 5926 03:26:39,520 --> 03:26:41,960 AND FAMILIES AS ACTIVE 5927 03:26:41,960 --> 03:26:46,360 PARTICIPANTS IN ALL ELEMENTS. 5928 03:26:46,360 --> 03:26:47,840 SO THE MULTI-STAKEHOLDER TEAMS 5929 03:26:47,840 --> 03:26:49,200 FOR THE SICKLE CELL LEARNING 5930 03:26:49,200 --> 03:26:50,520 COMMUNITY INCLUDE NOT ONLY 5931 03:26:50,520 --> 03:26:52,800 PATIENTS AND THEIR FAMILIES BUT 5932 03:26:52,800 --> 03:26:54,520 ALSO HEMATOLOGISTS, BOTH 5933 03:26:54,520 --> 03:26:56,600 PEDIATRIC AND ADULT 5934 03:26:56,600 --> 03:26:57,800 HEMATOLOGIST, ALLIED HEALTH 5935 03:26:57,800 --> 03:26:59,760 PROFESSIONALS, RESEARCHERS, 5936 03:26:59,760 --> 03:27:01,240 IMPLEMENTATION SCIENTISTS, WHO 5937 03:27:01,240 --> 03:27:03,040 HAVE ALL COME TOGETHER TO 5938 03:27:03,040 --> 03:27:04,720 IDENTIFY COMMON GOALS AND SELECT 5939 03:27:04,720 --> 03:27:09,000 IMPROVEMENT AREAS. 5940 03:27:09,000 --> 03:27:11,120 WE'VE ESTABLISHED WORKING GROUPS 5941 03:27:11,120 --> 03:27:15,120 THAT HAVE PUT TOGETHER CHANGE 5942 03:27:15,120 --> 03:27:16,400 PACKAGE, AND WE'LL BE ABLE TO 5943 03:27:16,400 --> 03:27:17,720 MEASURE CHANGE ULTIMATELY, AT 5944 03:27:17,720 --> 03:27:19,560 LEAST AT THE PATIENT LEVEL, 5945 03:27:19,560 --> 03:27:20,760 USING DATA THAT'S IN THE DATA 5946 03:27:20,760 --> 03:27:20,960 HUB. 5947 03:27:20,960 --> 03:27:22,760 NOW THIS WILL BE THE VERY FIRST 5948 03:27:22,760 --> 03:27:24,640 TIME THAT A LEARNING COMMUNITY 5949 03:27:24,640 --> 03:27:26,440 HAS BEEN ESTABLISHED WITH SICKLE 5950 03:27:26,440 --> 03:27:27,760 CELL DISEASE AT ITS CORE. 5951 03:27:27,760 --> 03:27:30,160 SOME OF YOU IN ACADEMIC 5952 03:27:30,160 --> 03:27:31,240 INSTITUTIONS MAY BE FAMILIAR 5953 03:27:31,240 --> 03:27:33,000 WITH OTHER LEARNING HEALTH 5954 03:27:33,000 --> 03:27:36,800 NETWORKS OR LEARNING COMMUNITIES 5955 03:27:36,800 --> 03:27:38,520 THAT HAVE BEEN ESTABLISHED TO 5956 03:27:38,520 --> 03:27:40,480 ADDRESS AND IMPROVE OUTCOMES FOR 5957 03:27:40,480 --> 03:27:42,440 PATIENTS WITH HEART FAILURE, 5958 03:27:42,440 --> 03:27:43,960 CYSTIC FIBROSIS, WITH 5959 03:27:43,960 --> 03:27:45,320 INFLAMMATORY BOWEL DISEASE, MANY 5960 03:27:45,320 --> 03:27:51,280 OF WHICH HAVE HAD SOME 5961 03:27:51,280 --> 03:27:52,480 REMARKABLE SUCCESS OVER THE LAST 5962 03:27:52,480 --> 03:27:53,760 10 TO 12 YEARS. 5963 03:27:53,760 --> 03:27:55,360 THE LEARNING COMMUNITY FOR 5964 03:27:55,360 --> 03:28:00,560 SICKLE CELL DISEASE HAS SELECTED 5965 03:28:00,560 --> 03:28:01,840 AS ITS PRIMARY PURPOSE TO 5966 03:28:01,840 --> 03:28:03,760 IMPROVE THE CARE AND OUTCOMES OF 5967 03:28:03,760 --> 03:28:05,240 PEOPLE LIVING WITH SICKLE CELL 5968 03:28:05,240 --> 03:28:05,560 DISEASE. 5969 03:28:05,560 --> 03:28:06,760 WE'RE GOING TO ACCOMPLISH THAT 5970 03:28:06,760 --> 03:28:11,200 BY USING DATA TO IDENTIFY QI 5971 03:28:11,200 --> 03:28:11,880 OPPORTUNITIES, AND WE'VE ALREADY 5972 03:28:11,880 --> 03:28:14,920 STARTED BY LAUNCHING PILOT 5973 03:28:14,920 --> 03:28:15,680 LEARNING COMMUNITY SITES AT 5974 03:28:15,680 --> 03:28:17,920 ABOUT 10 TO 20 OF THE SITES THAT 5975 03:28:17,920 --> 03:28:22,960 ARE ALIGNED WITHIN THE ASH RC 5976 03:28:22,960 --> 03:28:24,640 SITES THAT HAVE BEEN DESCRIBED 5977 03:28:24,640 --> 03:28:32,160 JUST A FEW MOMENTS AGO. 5978 03:28:32,160 --> 03:28:32,920 THESE ACTUALLY ARE SOME OF THE 5979 03:28:32,920 --> 03:28:34,600 SITES THAT JUST HAVE ELECTED TO 5980 03:28:34,600 --> 03:28:38,400 BECOME PART OF OUR PILOT SITES. 5981 03:28:38,400 --> 03:28:40,320 THEY ARE A SUBSET OF THE SITES 5982 03:28:40,320 --> 03:28:45,480 THAT ARE A PART OF THE ASH RC, 5983 03:28:45,480 --> 03:28:47,320 AND ALSO SOME WHO ARE ONBOARDING 5984 03:28:47,320 --> 03:28:49,520 INTO THE DATA HUB. 5985 03:28:49,520 --> 03:28:52,000 AND SO AMONG THESE SITES, THEY 5986 03:28:52,000 --> 03:28:55,240 INCLUDE ALMOST AN EQUAL BALANCE 5987 03:28:55,240 --> 03:28:56,480 BETWEEN PEDIATRIC AND ADULT 5988 03:28:56,480 --> 03:28:57,280 PATIENTS. 5989 03:28:57,280 --> 03:28:58,960 THEY REPRESENT ABOUT 10,000 5990 03:28:58,960 --> 03:29:00,840 SICKLE CELL PATIENTS, AND THEY 5991 03:29:00,840 --> 03:29:03,120 ARE CURRENTLY IMPLEMENTING QI 5992 03:29:03,120 --> 03:29:04,400 PROJECT, WHICH I'LL DESCRIBE FOR 5993 03:29:04,400 --> 03:29:08,240 YOU. 5994 03:29:08,240 --> 03:29:10,640 WE HAD A DESIGN WORK GROUP AND 5995 03:29:10,640 --> 03:29:13,480 WE HAVE BEEN MAINTAINING A 5996 03:29:13,480 --> 03:29:14,320 TECHNICAL ADVISORY GROUP THAT 5997 03:29:14,320 --> 03:29:16,080 HAVE HELPED US TO ACTUALLY 5998 03:29:16,080 --> 03:29:18,480 FORMULATE A GLOBAL AIM, WHICH IS 5999 03:29:18,480 --> 03:29:20,320 TO PROFOUNDLY IMPROVE THE LIFE 6000 03:29:20,320 --> 03:29:21,640 COURSE AND QUALITY OF LIFE OF 6001 03:29:21,640 --> 03:29:22,640 INDIVIDUALS LIVING WITH SICKLE 6002 03:29:22,640 --> 03:29:24,800 CELL DISEASE. 6003 03:29:24,800 --> 03:29:28,520 THIS TEAM, THROUGH AN ITERATIVE 6004 03:29:28,520 --> 03:29:31,560 PROCESS, HAVE IDENTIFIED TWO QI 6005 03:29:31,560 --> 03:29:31,760 GOALS. 6006 03:29:31,760 --> 03:29:33,640 THESE WILL NOT BE THEIR LAST 6007 03:29:33,640 --> 03:29:35,200 GOALS BUT CERTAINLY THE FIRST 6008 03:29:35,200 --> 03:29:35,640 TWO. 6009 03:29:35,640 --> 03:29:40,040 THE FIRST, WHICH ALL PILOTS THEY 6010 03:29:40,040 --> 03:29:42,840 PARTICIPATE IN, IS TO IMPROVE 6011 03:29:42,840 --> 03:29:45,400 THE RELIABLE USE OF DISEASE 6012 03:29:45,400 --> 03:29:46,600 MODIFYING THERAPY, AND THIS 6013 03:29:46,600 --> 03:29:48,640 INCLUDES, OF COURSE, HURRICANE 6014 03:29:48,640 --> 03:29:50,280 HYDROXYUREA. 6015 03:29:50,280 --> 03:29:53,680 SOME MY PAI LOT SITES WILL HAVE 6016 03:29:53,680 --> 03:29:56,640 A SECOND QI PROJECT WHICH WILL 6017 03:29:56,640 --> 03:29:58,680 IMPROVE THE USE OF CODEVELOPED 6018 03:29:58,680 --> 03:29:59,760 PAIN MANAGEMENT PLANS, WHICH 6019 03:29:59,760 --> 03:30:00,720 MEANS CODEVELOP WITH THE PATIENT 6020 03:30:00,720 --> 03:30:07,640 AND THEIR PROVIDER. 6021 03:30:07,640 --> 03:30:09,360 THESE TEAMS HAVE ACTUALLY COME 6022 03:30:09,360 --> 03:30:09,960 TOGETHER FROM THE PILOT SITES 6023 03:30:09,960 --> 03:30:12,120 AND HAVE PUT TOGETHER A TOOLKIT 6024 03:30:12,120 --> 03:30:15,280 WHICH CONTINUES TO GROW, AND 6025 03:30:15,280 --> 03:30:20,600 RESIDES IN THE ASH COMMUNITY'S 6026 03:30:20,600 --> 03:30:21,160 WEBPAGES. 6027 03:30:21,160 --> 03:30:23,760 THE QI TOOLS HAVE INCLUDED THOSE 6028 03:30:23,760 --> 03:30:26,720 THAT INCLUDE THINGS LIKE THEIR 6029 03:30:26,720 --> 03:30:29,360 PAIN ACTION PLANS FROM VARIOUS 6030 03:30:29,360 --> 03:30:33,120 SITES, MATERIALS THAT SITES ARE 6031 03:30:33,120 --> 03:30:34,720 USING FOR PATIENT EDUCATION 6032 03:30:34,720 --> 03:30:37,360 AROUND DISEASE HOD GUYING 6033 03:30:37,360 --> 03:30:38,440 THERAPIES, PROCESS MAPS THAT 6034 03:30:38,440 --> 03:30:40,000 SOME OF THE TEAMS HAVE DEVELOPED 6035 03:30:40,000 --> 03:30:41,040 IN TERMS OF DECIDING HOW 6036 03:30:41,040 --> 03:30:44,680 PATIENTS ARE ENGAGED AND HOW 6037 03:30:44,680 --> 03:30:48,520 THEY CONSIDER THE USE OF, FOR 6038 03:30:48,520 --> 03:30:49,840 INSTANCE, DISEASE MODIFYING 6039 03:30:49,840 --> 03:30:52,040 THERAPIES, WHEN ARE THEY 6040 03:30:52,040 --> 03:30:53,080 INTRODUCED, WHO DOES THAT, WHAT 6041 03:30:53,080 --> 03:30:55,480 IS THE PROCESS AND HOW 6042 03:30:55,480 --> 03:30:59,120 FREQUENTLY ARE THESE THINGS 6043 03:30:59,120 --> 03:30:59,960 RE-ASSESSED AT 6044 03:30:59,960 --> 03:31:01,480 EACH ONE OF THE SITES. 6045 03:31:01,480 --> 03:31:04,240 SO IT HAS PROVIDED AN AMAZING 6046 03:31:04,240 --> 03:31:05,760 OPPORTUNITY FOR ALL OF THE PILOT 6047 03:31:05,760 --> 03:31:11,320 SITES TO WORK TOGETHER ON 6048 03:31:11,320 --> 03:31:12,120 MONTHLY ACTION PERIODICALS TO 6049 03:31:12,120 --> 03:31:13,160 LOOK AT PROGRESS THAT THEY'RE 6050 03:31:13,160 --> 03:31:16,800 MAKING AND DECIDING AT EACH SITE 6051 03:31:16,800 --> 03:31:18,640 HOW THEY WILL CHOOSE TO ONBOARD 6052 03:31:18,640 --> 03:31:25,280 THESE TWO INITIATIVES. 6053 03:31:25,280 --> 03:31:26,640 I SHOULD ALSO MENTION WHILE THIS 6054 03:31:26,640 --> 03:31:28,800 EFFORT HAS LARGELY BEEN 6055 03:31:28,800 --> 03:31:31,880 SUPPORTED BY THE AMERICAN 6056 03:31:31,880 --> 03:31:33,600 SOCIETY OF HEMATOLOGY, WE HAVE 6057 03:31:33,600 --> 03:31:37,120 BEEN GRATEFUL FOR A SUPPORT FOR 6058 03:31:37,120 --> 03:31:39,240 A GRANT FROM THE DEPARTMENT OF 6059 03:31:39,240 --> 03:31:39,840 HEALTH AND HUMAN SERVICES. 6060 03:31:39,840 --> 03:31:41,240 YEAR ONE HAD BEEN ABOUT THE 6061 03:31:41,240 --> 03:31:43,520 DEVELOPMENT AND DESIGN OF THE 6062 03:31:43,520 --> 03:31:45,840 LEARNING COMMUNITY AND 6063 03:31:45,840 --> 03:31:48,360 FACILITATING INCREASED 6064 03:31:48,360 --> 03:31:49,760 PARTICIPATION, THE DATA HUB. 6065 03:31:49,760 --> 03:31:51,080 YEAR TWO, WHICH WE ARE CURRENTLY 6066 03:31:51,080 --> 03:31:52,680 IN, IS ABOUT IMPLEMENTATION, AND 6067 03:31:52,680 --> 03:31:54,360 SO THAT IS WHY DURING THIS YEAR, 6068 03:31:54,360 --> 03:31:57,840 WE ARE FOCUSING ON GETTING THE 6069 03:31:57,840 --> 03:32:00,320 PILOT SITES TO ACTUALLY BEGIN 6070 03:32:00,320 --> 03:32:02,960 THE WORK OF CREATING THE CHANGE 6071 03:32:02,960 --> 03:32:09,520 PACKAGE THAT WE HOPE TO ACTUALLY 6072 03:32:09,520 --> 03:32:12,240 EVENTUALLY SEE ACROSS THE ENTIRE 6073 03:32:12,240 --> 03:32:15,840 SET OF INSTITUTIONS THAT ARE 6074 03:32:15,840 --> 03:32:20,760 PART OF THE LEARNING COMMUNITY, 6075 03:32:20,760 --> 03:32:22,160 AND ULTIMATELY IN YEAR THREE, WE 6076 03:32:22,160 --> 03:32:23,720 WILL BEGIN A NATIONWIDE 6077 03:32:23,720 --> 03:32:24,720 IMPLEMENTATION AND THAT WILL 6078 03:32:24,720 --> 03:32:25,360 BEGIN IN OCTOBER OF THIS YEAR. 6079 03:32:25,360 --> 03:32:27,400 FOR THE FIRST TIME, THIS HAS 6080 03:32:27,400 --> 03:32:29,040 OBVIOUSLY BEEN IMPACTED BY THE 6081 03:32:29,040 --> 03:32:31,120 PANDEMIC, WE WILL HAVE AN 6082 03:32:31,120 --> 03:32:35,400 IN-PERSON LEARNING COMMUNITY 6083 03:32:35,400 --> 03:32:36,480 MEETING IN LATE SEPTEMBER. 6084 03:32:36,480 --> 03:32:38,320 WE'RE LOOKING FORWARD TO HAVING 6085 03:32:38,320 --> 03:32:39,280 LESSONS LEARNED FROM ALL OF OUR 6086 03:32:39,280 --> 03:32:40,920 SITES THAT ARE PARTICIPATE, AND 6087 03:32:40,920 --> 03:32:43,320 TO REALLY LOOK FOR THE 6088 03:32:43,320 --> 03:32:43,920 OPPORTUNITIES TO BEGIN ALSO 6089 03:32:43,920 --> 03:32:47,160 LOOKING AT SUSTAINABILITY AND 6090 03:32:47,160 --> 03:32:50,360 SCALABILITY OF OUR EFFORTS. 6091 03:32:50,360 --> 03:32:52,040 SO WITH THAT, I'M GOING TO TURN 6092 03:32:52,040 --> 03:32:53,800 THIS BACK OVER TO DR. ABRAMS TO 6093 03:32:53,800 --> 03:32:54,160 SUMMARIZE. 6094 03:32:54,160 --> 03:32:59,960 THANK YOU. 6095 03:32:59,960 --> 03:33:01,000 >> NEXT SLIDE. 6096 03:33:01,000 --> 03:33:04,760 THANK YOU. 6097 03:33:04,760 --> 03:33:09,640 SO AS YOU CAN SEE, WE'RE ON A 6098 03:33:09,640 --> 03:33:11,400 WAVE AND PLANNING ON RIDING THIS 6099 03:33:11,400 --> 03:33:11,880 WAVE. 6100 03:33:11,880 --> 03:33:13,600 THERE'S BEEN TREMENDOUS 6101 03:33:13,600 --> 03:33:14,480 MOMENTUM, THERE'S BEEN INTEREST, 6102 03:33:14,480 --> 03:33:15,960 THERE'S BEEN INVESTING, 6103 03:33:15,960 --> 03:33:19,280 INVESTMENT IN MAKING THIS WORK. 6104 03:33:19,280 --> 03:33:21,280 SO WE'RE LOOKING FORWARD TO 6105 03:33:21,280 --> 03:33:25,920 VALVE NIEZING FORCES AND 6106 03:33:25,920 --> 03:33:26,960 GALVANIZING FORCES WITH ALL OF 6107 03:33:26,960 --> 03:33:27,760 YOU INVOLVED ON THIS CALL. 6108 03:33:27,760 --> 03:33:29,280 I THINK IF WE CAN HARNESS THE 6109 03:33:29,280 --> 03:33:30,400 ENERGY AND THE INTEREST THAT 6110 03:33:30,400 --> 03:33:33,680 I'VE SEEN AT THIS MEETING, AND I 6111 03:33:33,680 --> 03:33:38,120 KNOW IS HERE TODAY, IT WILL BE 6112 03:33:38,120 --> 03:33:39,840 TERRIFIC. 6113 03:33:39,840 --> 03:33:41,320 WE'RE WELCOMING YOU TO REACH OUT 6114 03:33:41,320 --> 03:33:45,440 TO US WITH COLLABORATIONS OR 6115 03:33:45,440 --> 03:33:46,760 IDEAS, AND I'LL DIRECT YOU TO 6116 03:33:46,760 --> 03:33:47,440 OUR CONTACT INFORMATION, WHICH 6117 03:33:47,440 --> 03:33:51,920 IS SHOWN AT THE LEFT LOWER 6118 03:33:51,920 --> 03:33:55,080 PORTION OF THE SLIDE, 6119 03:33:55,080 --> 03:33:55,680 INFO@ASHRC.ORG. 6120 03:33:55,680 --> 03:33:56,720 THIS IS HOW COLLECTIVELY WE'RE 6121 03:33:56,720 --> 03:33:57,840 GOING TO BE ABLE TO MAKE A 6122 03:33:57,840 --> 03:33:59,040 DIFFERENCE WITH THIS DISEASE, 6123 03:33:59,040 --> 03:34:00,560 AND I WOULD LOVE FOR YOU TO 6124 03:34:00,560 --> 03:34:05,400 PERSONALLY REACH OUT TO ME SO 6125 03:34:05,400 --> 03:34:06,000 THAT WE CAN WORK TOGETHER. 6126 03:34:06,000 --> 03:34:07,600 SO WITH THAT, I'M GOING TO WRAP 6127 03:34:07,600 --> 03:34:07,880 UP. 6128 03:34:07,880 --> 03:34:09,040 I'D BE HAPPY TO TAKE ANY 6129 03:34:09,040 --> 03:34:10,560 QUESTIONS YOU HAVE OR MAYBE 6130 03:34:10,560 --> 03:34:13,200 DIRECT THEM TOWARDS MY 6131 03:34:13,200 --> 03:34:16,480 COLLEAGUES HERE. 6132 03:34:16,480 --> 03:34:20,240 SO WE'RE BACK AND STARTING WITH 6133 03:34:20,240 --> 03:34:22,440 SYMPOSIUM 4. 6134 03:34:22,440 --> 03:34:26,520 WE'RE GOING TO START WITH 6135 03:34:26,520 --> 03:34:26,800 DR. RIVERS. 6136 03:34:26,800 --> 03:34:30,680 THE ABNORMAL PRESENCE OF 6137 03:34:30,680 --> 03:34:35,160 MITOCHONDRIA IN SERBING LATING 6138 03:34:35,160 --> 03:34:45,680 RED BLOOD CELLS S WITH STRESS 6139 03:34:47,240 --> 03:34:50,360 ERYTHROPOISE IS IN MOUSE MODEL. 6140 03:34:50,360 --> 03:34:51,240 >>I'M FROM OAKLAND CALIFORNIA 6141 03:34:51,240 --> 03:34:52,440 AND WE SAID THE NAME OF MY TALK 6142 03:34:52,440 --> 03:34:53,920 SO I'LL GET INTO IT. 6143 03:34:53,920 --> 03:34:55,800 IT'S GOING TO BE A 15 MINUTE 6144 03:34:55,800 --> 03:34:58,040 TALK VERSUS A 30 MINUTE TALK SO 6145 03:34:58,040 --> 03:35:00,400 I WANT TO GIVE EVERYONE THE 6146 03:35:00,400 --> 03:35:00,960 HEADS UP. 6147 03:35:00,960 --> 03:35:03,000 IN 2017 MY GROUP AT THE 6148 03:35:03,000 --> 03:35:05,480 UNIVERSITY OF ILLINOIS-CHICAGO 6149 03:35:05,480 --> 03:35:08,480 IN MY LABORATORY WERE FIRST TO 6150 03:35:08,480 --> 03:35:11,720 PUBLISH A CASE SERIES OF SIX 6151 03:35:11,720 --> 03:35:13,840 PATIENTS WHERE WE DESCRIBE THE 6152 03:35:13,840 --> 03:35:15,200 MITOCHONDRIAL RETENTION IN 6153 03:35:15,200 --> 03:35:16,520 SICKLE CELL DISEASE AND WE 6154 03:35:16,520 --> 03:35:20,400 SHOWED IN THE SIX PATIENTS THEY 6155 03:35:20,400 --> 03:35:25,640 HAD A HIGHER NUMBER ERYTHROCYTES 6156 03:35:25,640 --> 03:35:29,640 AND YOU CAN SEE IN THE UPPER 6157 03:35:29,640 --> 03:35:40,280 LEFT YOU SEE REFIX RED BLOOD 6158 03:35:40,280 --> 03:35:42,280 CELL AND REFIX WITH 6159 03:35:42,280 --> 03:35:42,680 MITOCHONDRIA. 6160 03:35:42,680 --> 03:35:44,040 THERE'S A SIGNIFICANT DIFFERENCE 6161 03:35:44,040 --> 03:35:48,040 BETWEEN CONTROLS AND PEOPLE WITH 6162 03:35:48,040 --> 03:35:49,240 HEMOGLOBIN SS. 6163 03:35:49,240 --> 03:35:50,920 SO WHY WOULD THIS BE AN ISSUE 6164 03:35:50,920 --> 03:35:54,320 HAVING MITOCHONDRIA RETAINED IN 6165 03:35:54,320 --> 03:35:56,000 RED BLOOD CELLS. 6166 03:35:56,000 --> 03:35:58,280 USUALLY MITOCHONDRIA ROOT 6167 03:35:58,280 --> 03:36:03,160 BETWEEN THE RETIC AND RED BLOOD 6168 03:36:03,160 --> 03:36:08,640 CELLS AND FOR SICKLE CELL 6169 03:36:08,640 --> 03:36:11,240 PATIENTS THIS COULD BE A PROBLEM 6170 03:36:11,240 --> 03:36:15,240 BECAUSE MITOCHONDRIA CONSUME 6171 03:36:15,240 --> 03:36:18,520 OXYGEN TO MAKE ATP CAN MAKE IT 6172 03:36:18,520 --> 03:36:22,040 HYPOXIC AND SICKLY AND INCREASE 6173 03:36:22,040 --> 03:36:28,080 ROS GENERATION WHICH WE FURTHER 6174 03:36:28,080 --> 03:36:30,640 EVALUATED THIS IN A GROUP OF 6175 03:36:30,640 --> 03:36:32,920 HEMOGLOBIN SS PATIENTS AND SC 6176 03:36:32,920 --> 03:36:33,520 VARIANT PATIENTS. 6177 03:36:33,520 --> 03:36:35,560 WHAT WE SAW WAS THAT SS PATIENTS 6178 03:36:35,560 --> 03:36:39,240 HAD A VARIETY MUCH LEVELS OF 6179 03:36:39,240 --> 03:36:43,760 INCREASED RED BLOOD CELL 6180 03:36:43,760 --> 03:36:45,360 MITOCHONDRIA IN PANEL A AND A 6181 03:36:45,360 --> 03:36:48,640 VARIETY OF LEVELS OF INCREASED 6182 03:36:48,640 --> 03:36:48,800 ROS. 6183 03:36:48,800 --> 03:36:53,720 PATIENTS WERE ELEVATED BUT NOT 6184 03:36:53,720 --> 03:36:55,360 TO THE AMOUNT OF EXCESS 6185 03:36:55,360 --> 03:36:55,960 PATIENTS. 6186 03:36:55,960 --> 03:37:00,120 WHEN WE LOOKED AT ALL PERIPHERAL 6187 03:37:00,120 --> 03:37:00,880 RED BLOOD CELLS THERE'S AN 6188 03:37:00,880 --> 03:37:02,160 INCREASE IN SS AND A LITTLE BIT 6189 03:37:02,160 --> 03:37:04,520 OF SC AND THIS WAS ALREADY 6190 03:37:04,520 --> 03:37:04,840 KNOWN. 6191 03:37:04,840 --> 03:37:06,560 BUT WHAT WASN'T KNOWN AT THE 6192 03:37:06,560 --> 03:37:09,680 TIME WAS PANEL D THAT THE RED 6193 03:37:09,680 --> 03:37:11,640 BLOOD CELLS WITH MITOCHONDRIA 6194 03:37:11,640 --> 03:37:14,720 CONTAINED MORE ROS THAN THE RED 6195 03:37:14,720 --> 03:37:16,040 BLOOD CELLS WITHOUT MITOCHONDRIA 6196 03:37:16,040 --> 03:37:20,400 AND IN THIS ONE WE'RE USING DCSF 6197 03:37:20,400 --> 03:37:26,800 AS OUR STAIN AND CD71 WHICH 6198 03:37:26,800 --> 03:37:28,320 STAINS SIMILAR TO ORANGE AND 6199 03:37:28,320 --> 03:37:29,640 CONTINUING TO USE TERN TO LOOK 6200 03:37:29,640 --> 03:37:33,240 AT MITOCHONDRIA. 6201 03:37:33,240 --> 03:37:40,520 SO WHEN WE LOOKED AT HEMOLYSIS 6202 03:37:40,520 --> 03:37:46,040 WE SEE A CORRELATION BETWEEN 6203 03:37:46,040 --> 03:37:51,240 BILIRUBIN MARKERS WE DIDN'T SEE 6204 03:37:51,240 --> 03:37:55,320 IN PATIENTS WITH HIGH DROXIA AND 6205 03:37:55,320 --> 03:37:56,800 WE WANTED TO EVALUATE THE 6206 03:37:56,800 --> 03:37:58,280 DIFFERENCE IN MITOCHONDRIAL 6207 03:37:58,280 --> 03:38:04,040 RETENTION BETWEEN THE LEVELS OF 6208 03:38:04,040 --> 03:38:13,160 CONTROL SICKLE CELL AND 6209 03:38:13,160 --> 03:38:14,840 ERYTHROPOIESIS AND WE WANTED TO 6210 03:38:14,840 --> 03:38:16,160 EVALUATE DIFFERENCES IN THE 6211 03:38:16,160 --> 03:38:19,480 OXYGEN CONSUMPTION RATE OF 6212 03:38:19,480 --> 03:38:23,040 CONTROL SICKLE CELL DISEASE AND 6213 03:38:23,040 --> 03:38:27,240 STRESSOR ERYTHROPOIESIS MODEL 6214 03:38:27,240 --> 03:38:36,600 AND CREATED A MODEL BY 6215 03:38:36,600 --> 03:38:37,240 PHLEBO 6216 03:38:37,240 --> 03:38:38,000 PHLEBOTOMYZING AND COLLECTED 6217 03:38:38,000 --> 03:38:39,720 BLOOD SAMPLES ON THE FIFTH DAY. 6218 03:38:39,720 --> 03:38:42,680 WE DID THE RETENTION ASSAYS OF 6219 03:38:42,680 --> 03:38:44,560 THE PERIPHERAL BLOOD AND 6220 03:38:44,560 --> 03:38:47,680 INDUCTION WITH THE PHLEBOTOMY 6221 03:38:47,680 --> 03:38:55,360 AND COLLECT FROM THE ORBITAL 6222 03:38:55,360 --> 03:39:01,000 SIGN -- SINUS AND IF YOU LOOK 6223 03:39:01,000 --> 03:39:03,240 IN THE BLUE THE UPPER LEFT 6224 03:39:03,240 --> 03:39:06,080 QUADRANTS THERE'S INCREASED 6225 03:39:06,080 --> 03:39:10,120 PHLEBOTOMY OF ERYTHROCYTES WITH 6226 03:39:10,120 --> 03:39:13,800 MITOCHONDRIA WITH CONTROL NOT AS 6227 03:39:13,800 --> 03:39:15,160 MUCH AS SICKLE CELL DISEASE AND 6228 03:39:15,160 --> 03:39:20,280 INCREASED COMPARED TO CONTROL 6229 03:39:20,280 --> 03:39:22,800 BUT NOT AS MUCH AS HEMOGLOBIN 6230 03:39:22,800 --> 03:39:25,040 SS. 6231 03:39:25,040 --> 03:39:25,720 WE WERE ABLE TO INCREASE THIS BY 6232 03:39:25,720 --> 03:39:31,240 PHLEBOTOMY. 6233 03:39:31,240 --> 03:39:33,000 NEXT WE LOOK AT ROS AND 6234 03:39:33,000 --> 03:39:34,760 PHLEBOTOMY AND CONTROL HAVE THE 6235 03:39:34,760 --> 03:39:37,160 MOST THEY HAVE RED BLOOD CELLS 6236 03:39:37,160 --> 03:39:41,120 WITHOUT MITOCHONDRIA WHERE 6237 03:39:41,120 --> 03:39:43,240 SICKLE CELL HAS THE MOST CLOSELY 6238 03:39:43,240 --> 03:39:45,720 FOLLOWED BY RED BLOOD CELLS 6239 03:39:45,720 --> 03:39:48,160 WITHOUT MITOCHONDRIA WHICH AND 6240 03:39:48,160 --> 03:39:49,920 IN THE RED IS RED BLOOD CELL 6241 03:39:49,920 --> 03:39:52,080 WITH MITOCHONDRIA BUT THE LEFT 6242 03:39:52,080 --> 03:39:54,920 SIDE IS TO SHOW YOU INDEPENDENT 6243 03:39:54,920 --> 03:39:57,760 OF WHERE YOUR RED BLOOD CELLS 6244 03:39:57,760 --> 03:39:59,000 WITH MITOCHONDRIA COME FROM THEY 6245 03:39:59,000 --> 03:40:01,200 HAVE A SIMILAR AMOUNT OF ROS AND 6246 03:40:01,200 --> 03:40:03,240 YOU CAN SEE THAT IN THE GRAPH 6247 03:40:03,240 --> 03:40:13,840 WHICH BASICALLY SHOW THAT RETI 6248 03:40:14,240 --> 03:40:19,560 TEND TO HAVE MORE ROS THAN RBCs 6249 03:40:19,560 --> 03:40:24,080 WITHOUT MITOCHONDRIA OR RETICES 6250 03:40:24,080 --> 03:40:27,320 WITHOUT MITOCHONDRIA AND THE 6251 03:40:27,320 --> 03:40:30,520 DETERMINING FACTOR IS WHETHER 6252 03:40:30,520 --> 03:40:36,360 YOU HAVE HEME GLOBIN S. 6253 03:40:36,360 --> 03:40:39,640 AND NEXT WE WANTED TO DO A 6254 03:40:39,640 --> 03:40:41,720 PRECURSOR EVALUATION TO SEE IF 6255 03:40:41,720 --> 03:40:46,040 WE CAN SEE WHERE THE DEFECT WAS 6256 03:40:46,040 --> 03:40:48,440 OCCURRING AND WHEN ROS WAS 6257 03:40:48,440 --> 03:40:49,640 INCREASED. 6258 03:40:49,640 --> 03:40:51,640 SO WE FLUSHED THE BONE MARROW 6259 03:40:51,640 --> 03:40:53,320 FROM THE THREE GROUPS AND 6260 03:40:53,320 --> 03:40:58,800 STAINED THEM WITH THE PRE CUSSER 6261 03:40:58,800 --> 03:41:05,640 MARKER CD45 -- PRECURSOR MARKER 6262 03:41:05,640 --> 03:41:11,000 CD45 WITH A METHOD FROM 2013 AND 6263 03:41:11,000 --> 03:41:15,240 STAINING THE CD-45 VERSUS SIDE 6264 03:41:15,240 --> 03:41:16,880 SCATTER AND CREATED PATTERNS TO 6265 03:41:16,880 --> 03:41:19,240 USE OUR SORTER AND WERE ABLE TO 6266 03:41:19,240 --> 03:41:23,240 CREATE FIVE DIFFERENT SUBGROUPS 6267 03:41:23,240 --> 03:41:26,080 OR SEPARATE OUT THE BASIL 6268 03:41:26,080 --> 03:41:33,920 PHILICS AND RETICULOCYTES AND 6269 03:41:33,920 --> 03:41:36,120 SEPARATED THEM BY FLOW CYTOMETRY 6270 03:41:36,120 --> 03:41:36,560 FOR ROS. 6271 03:41:36,560 --> 03:41:38,440 THIS IS THE PATTERN YOU GET WHEN 6272 03:41:38,440 --> 03:41:44,400 YOU DO THE CD 44 VERSUS FORWARD 6273 03:41:44,400 --> 03:41:46,400 SIDE SPLATTER AND WE SAW IN 6274 03:41:46,400 --> 03:41:51,240 GENERAL AN INCREASE IN 6275 03:41:51,240 --> 03:41:52,920 PRECURSORS FROM 1 TO 6. 6276 03:41:52,920 --> 03:41:54,040 SOMETIMES SIGNIFICANT AND 6277 03:41:54,040 --> 03:41:57,600 SOMETIMES NOT UNTIL WE GOT TO 6278 03:41:57,600 --> 03:41:59,960 THE RED BLOOD CELLS AND THAT WAS 6279 03:41:59,960 --> 03:42:03,280 BECAUSE IN SICKLE CELL WE ARE 6280 03:42:03,280 --> 03:42:12,560 HEMOLIES -- HEMOLYZING AND IT 6281 03:42:12,560 --> 03:42:15,240 DECREASED OVER THE POPULATION 6282 03:42:15,240 --> 03:42:18,200 SIZE FROM STAGE 1 TO THE RED 6283 03:42:18,200 --> 03:42:21,280 BLOOD CELL IT BECAME SMALLER OR 6284 03:42:21,280 --> 03:42:28,880 DECREASED AND THEN THERE WAS A 6285 03:42:28,880 --> 03:42:34,280 CONTROL IN PHLEBOTOMY AT THE SS 6286 03:42:34,280 --> 03:42:35,280 RED BLOOD CELL STAGE WE SAW IN 6287 03:42:35,280 --> 03:42:41,320 SS. 6288 03:42:41,320 --> 03:42:44,240 THEN WE LOOKED AT MITOCHONDRIAL 6289 03:42:44,240 --> 03:42:46,800 FLUORESCENCE AND WE COULD SEE 6290 03:42:46,800 --> 03:42:48,800 THE SAME PATTERNS THE 6291 03:42:48,800 --> 03:42:51,240 MITOCHONDRIAL FLUORESCENCE WAS 6292 03:42:51,240 --> 03:42:53,400 DECREASING OVER TIME WITH AN 6293 03:42:53,400 --> 03:42:55,320 INCREASE AT STAGE 6 THE RED 6294 03:42:55,320 --> 03:43:00,760 BLOOD CELL STAGE. 6295 03:43:00,760 --> 03:43:02,960 NEXT WE WERE INTERESTED IN 6296 03:43:02,960 --> 03:43:05,400 LOOKING AT OXYGEN CONSUMPTION. 6297 03:43:05,400 --> 03:43:08,080 TO LOOK AT OXYGEN CONSUMPTION WE 6298 03:43:08,080 --> 03:43:12,320 LOOKED AT PERIPHERAL BLOOD AND 6299 03:43:12,320 --> 03:43:15,480 USED THE XE EXTRA CELLULAR FLUX 6300 03:43:15,480 --> 03:43:18,480 ANALYZER WHICH HAS THREE 6301 03:43:18,480 --> 03:43:26,760 INJECTIONS ONE IS OLIGO MYOCIN 6302 03:43:26,760 --> 03:43:28,760 AND THE NEXT IS SEP WHICH BLOCKS 6303 03:43:28,760 --> 03:43:31,240 THE FLOW OF THE ELECTRON 6304 03:43:31,240 --> 03:43:34,800 TRANSPORT CHAIN AND THAT ALLOWS 6305 03:43:34,800 --> 03:43:37,200 YOU TO MEASURE MAXIMAL 6306 03:43:37,200 --> 03:43:38,920 RESPIRATIONS AND THE NEXT 6307 03:43:38,920 --> 03:43:39,920 POISONS THE MITOCHONDRIA. 6308 03:43:39,920 --> 03:43:43,920 THAT ALLOWS YOU TO LOOK AT THE 6309 03:43:43,920 --> 03:43:45,080 NON-MITOCHONDRIAL OXYGEN 6310 03:43:45,080 --> 03:43:45,360 CONSUMPTION. 6311 03:43:45,360 --> 03:43:48,840 WE DID THIS IN A SERIES IN HUMAN 6312 03:43:48,840 --> 03:43:51,240 AND MOUSE INITIALLY AND WHAT WE 6313 03:43:51,240 --> 03:43:55,960 SAW WAS THAT IN BOTH HUMANS AND 6314 03:43:55,960 --> 03:44:01,000 IN MOUSE THE SICKLE CELL WAS 6315 03:44:01,000 --> 03:44:07,120 HIGHER IN BASAL OXYGEN 6316 03:44:07,120 --> 03:44:07,440 CONSUMPTION. 6317 03:44:07,440 --> 03:44:16,640 WHEN WE LOOKED AT THE 6318 03:44:16,640 --> 03:44:19,920 PHLEBOTOMIZED MOUSE WE SAW IT IN 6319 03:44:19,920 --> 03:44:24,000 RED BLOOD CELLS. 6320 03:44:24,000 --> 03:44:25,360 POSSIBLY BECAUSE THEY HAD 6321 03:44:25,360 --> 03:44:35,600 MITOCHONDRIA. 6322 03:44:41,480 --> 03:44:47,520 IN CONCLUSION THEY CONTAIN 6323 03:44:47,520 --> 03:44:48,240 LEVELS SIMILAR TO SICKLE CELL 6324 03:44:48,240 --> 03:44:51,600 MICE AND INTENSITY GOES TO THE 6325 03:44:51,600 --> 03:44:54,480 BONE MARROW AS WELL AS 6326 03:44:54,480 --> 03:44:55,320 MITOCHONDRIA THEMSELVES AND 6327 03:44:55,320 --> 03:44:57,160 SEEMED THE MITOCHONDRIAL OCCURS 6328 03:44:57,160 --> 03:45:06,760 DURING PRECURSOR AT THE RETICULA 6329 03:45:06,760 --> 03:45:10,080 SITE AND MOUSE HAD INCREASED 6330 03:45:10,080 --> 03:45:11,240 OXYGEN SIMILAR TO SICKLE CELL 6331 03:45:11,240 --> 03:45:12,040 DISEASE MICE LEADING US BACK TO 6332 03:45:12,040 --> 03:45:19,280 THE PICTURE WHERE WE SHOW 6333 03:45:19,280 --> 03:45:26,000 HEMOGLOBIN CAUSES SICKLING AND 6334 03:45:26,000 --> 03:45:26,920 EVOLYSIS AND THEY DON'T HAVE 6335 03:45:26,920 --> 03:45:31,200 SICK LING AND THEY DO HAVE THE 6336 03:45:31,200 --> 03:45:33,040 ROS GENERATION THE QUESTION IS 6337 03:45:33,040 --> 03:45:37,160 DID THE ROS GENERATE ENOUGH TO 6338 03:45:37,160 --> 03:45:46,080 LEAD TO HEHEMOLYSIS AND THEN WE 6339 03:45:46,080 --> 03:45:49,920 LOOKED AT THE EFFECT TO ALLOW US 6340 03:45:49,920 --> 03:45:52,360 TO EVALUATE THIS MODEL AND 6341 03:45:52,360 --> 03:45:55,600 UNDERSTAND WHAT MITOCHONDRIA 6342 03:45:55,600 --> 03:45:56,920 EFFECTED RED BLOOD CELL IS EVEN 6343 03:45:56,920 --> 03:45:57,160 BETTER. 6344 03:45:57,160 --> 03:46:00,080 SO THE NEXT STEPS WE WANT TO 6345 03:46:00,080 --> 03:46:04,400 FURTHER INVESTIGATE THE DEFECTS 6346 03:46:04,400 --> 03:46:06,440 IN SICKLE CELL DISEASE AND 6347 03:46:06,440 --> 03:46:09,440 RECENTLY A PAPER CAME OUT THAT 6348 03:46:09,440 --> 03:46:13,800 SHOWED DEFICIENCY PATHWAYS IN 6349 03:46:13,800 --> 03:46:15,040 SICKLE CELL DISEASE AND 6350 03:46:15,040 --> 03:46:16,920 DECREASED IN PINK IN NIK WAS 6351 03:46:16,920 --> 03:46:19,600 SEEN AND WE ALSO SAW INCREASES 6352 03:46:19,600 --> 03:46:22,880 IN ATG WITH LSD1 INHIBITION IN 6353 03:46:22,880 --> 03:46:26,080 OUR ORIGINAL PAPER. 6354 03:46:26,080 --> 03:46:33,960 WE WANT TO INVESTIGATE MYOPHAGE 6355 03:46:33,960 --> 03:46:42,360 INDUCING AGENTS AND ARGINNINE 6356 03:46:42,360 --> 03:46:48,000 AND ENDARI HAS BEEN SHOWN TO 6357 03:46:48,000 --> 03:46:50,120 EFFECT SICKLE CELL DISEASE AND 6358 03:46:50,120 --> 03:46:52,560 THERE'S A FASCINATING MECHANISM 6359 03:46:52,560 --> 03:46:55,320 THAT HELP IF YOU CONSIDER 6360 03:46:55,320 --> 03:46:56,040 THEY'RE ELECTRONIC TRANSPORT 6361 03:46:56,040 --> 03:46:58,080 CHAINS INSIDE THE RED BLOOD CELL 6362 03:46:58,080 --> 03:47:03,240 AND NOT JUST DOING GLYCOLYSIS 6363 03:47:03,240 --> 03:47:07,920 AND IN AN ARTICLE HAS TO 6364 03:47:07,920 --> 03:47:18,360 INCREASE RBC VIABILITY. 6365 03:47:29,920 --> 03:47:36,240 WE TALKED ABOUT MITOCHONDRIA IN 6366 03:47:36,240 --> 03:47:39,240 SICKLE CELL DISEASE AND 6367 03:47:39,240 --> 03:47:45,240 GLUTAMINE SICKLE CELL DISEASE. 6368 03:47:45,240 --> 03:47:49,360 AND I WANT TO MENTION AT THE END 6369 03:47:49,360 --> 03:47:52,120 NOT ONLY DOES MITOCHONDRIAL 6370 03:47:52,120 --> 03:47:57,760 INCREASE DEPLETE ROS GENERATION 6371 03:47:57,760 --> 03:48:06,040 AND SHOWN TO INCREASE RBC AFFECT 6372 03:48:06,040 --> 03:48:08,480 AND IT'S A PROINFLAMMATORY 6373 03:48:08,480 --> 03:48:15,240 BECAUSE OF THE HYPOME METMETMET 6374 03:48:15,240 --> 03:48:18,120 DNA AND THERE'S FURTHER 6375 03:48:18,120 --> 03:48:19,240 MECHANISMS TO TREAT 6376 03:48:19,240 --> 03:48:21,560 MITOCHONDRIAL DNA. 6377 03:48:21,560 --> 03:48:26,600 SO I WANT TO THANK THE PEOPLE IN 6378 03:48:26,600 --> 03:48:27,200 MY LAB. 6379 03:48:27,200 --> 03:48:37,640 HART HORNEMAN AND MIKAIL 6380 03:48:38,400 --> 03:48:39,880 ALEJANDRO AND THOSE FROM THE 6381 03:48:39,880 --> 03:48:41,480 UNIVERSITY OF ILLINOIS WHO 6382 03:48:41,480 --> 03:48:43,600 CONTINUE TO SUPPORT ME AND A 6383 03:48:43,600 --> 03:48:48,440 WOULD ALSO LIKE TO THANK NIH FOR 6384 03:48:48,440 --> 03:48:52,560 THEIR CONTINUED SUPPORT FOR THE 6385 03:48:52,560 --> 03:48:53,120 RECENT DIVERSITY PLATFORM. 6386 03:48:53,120 --> 03:49:03,360 ANY QUESTIONS? 6387 03:49:11,600 --> 03:49:12,720 >> THANK YOU, DR. RIVERS. 6388 03:49:12,720 --> 03:49:17,320 I DON'T SEE ANYTHING IN THE 6389 03:49:17,320 --> 03:49:17,520 CHAT. 6390 03:49:17,520 --> 03:49:20,560 THERE'S ONE SAYING 6391 03:49:20,560 --> 03:49:20,920 CONGRATULATIONS. 6392 03:49:20,920 --> 03:49:22,200 BEAUTIFUL AND ELEGANT WORK. 6393 03:49:22,200 --> 03:49:25,000 IT HAS APPLICATIONS IN SICKLE 6394 03:49:25,000 --> 03:49:26,120 CELL DISEASE AND NON-SICKLE CELL 6395 03:49:26,120 --> 03:49:26,560 CONDITIONS. 6396 03:49:26,560 --> 03:49:31,680 THERE'S A QUESTION FROM SUSAN. 6397 03:49:31,680 --> 03:49:34,120 >> IT SAYS HOW DOES THE 6398 03:49:34,120 --> 03:49:35,520 INHIBITOR IMPACT THIS. 6399 03:49:35,520 --> 03:49:39,040 OUR FIRST PAPER WE WERE LOOKING 6400 03:49:39,040 --> 03:49:43,640 AT LSD1 INHIBITERS TO INDUCE 6401 03:49:43,640 --> 03:49:46,480 HEMOGLOBIN F AND THEY DO THIS BY 6402 03:49:46,480 --> 03:49:56,880 INDUCING ATG5 AND ATG7. 6403 03:49:58,760 --> 03:50:08,800 >> 6404 03:50:11,320 --> 03:50:14,640 >> THEY'LL BE PRESENTING IMPACT 6405 03:50:14,640 --> 03:50:15,560 OF ARGININE TOMORROW AT NOON IT 6406 03:50:15,560 --> 03:50:18,200 WILL BE INTERESTING TO LOOK AT 6407 03:50:18,200 --> 03:50:22,120 THE FUNCTION IN RED BLOOD CELLS. 6408 03:50:22,120 --> 03:50:24,480 >> AND THERE'S A COMMENT ABOUT 6409 03:50:24,480 --> 03:50:24,800 SICKLE CELL. 6410 03:50:24,800 --> 03:50:31,920 MAY YOU COMMENT? 6411 03:50:31,920 --> 03:50:35,800 SO HOW DO MITOCHONDRIA AND 6412 03:50:35,800 --> 03:50:37,360 SICKLE CELL DISEASE -- MALARIA. 6413 03:50:37,360 --> 03:50:39,240 ONE INTERESTING THING AND THIS 6414 03:50:39,240 --> 03:50:43,640 COULD BE WITH HEMOGLOBIN S HAVE 6415 03:50:43,640 --> 03:50:47,240 YOU INCREASED REACTIVE OXYGEN 6416 03:50:47,240 --> 03:50:50,760 SPECIES INSIDE THE CELL AND MAY 6417 03:50:50,760 --> 03:50:55,080 BE INHOSPITABLE TO THE MALARIA 6418 03:50:55,080 --> 03:50:58,120 WITH THE OXYGEN ALREADY 6419 03:50:58,120 --> 03:51:05,560 INCREASED MITOCHONDRIA. 6420 03:51:05,560 --> 03:51:06,960 >> AND YOU ANSWERED THE QUESTION 6421 03:51:06,960 --> 03:51:10,120 HOW DID YOUR INHIBITORS AFFECT 6422 03:51:10,120 --> 03:51:20,240 THIS. 6423 03:51:37,440 --> 03:51:39,640 >> POSSIBLE STORAGE OF LEGIONS 6424 03:51:39,640 --> 03:51:40,320 OF RBC. 6425 03:51:40,320 --> 03:51:43,240 IF YOU LOOK AT THE NORMAL IN THE 6426 03:51:43,240 --> 03:51:45,400 GRAPH RETICS HAVE EIGHT OF 6427 03:51:45,400 --> 03:51:47,360 MITOCHONDRIA IN THEM REGARDLESS 6428 03:51:47,360 --> 03:51:50,560 OF AARSS BUT MOST PEOPLE DON'T 6429 03:51:50,560 --> 03:52:01,080 HAVE A HIGH PERCENTAGE OF RET 6430 03:52:12,760 --> 03:52:22,960 RETICULOCYTES. 6431 03:52:29,920 --> 03:52:34,000 >> YOU CAN ANSWER THAT TWO WAYS. 6432 03:52:34,000 --> 03:52:35,800 YOU CAN SEE FROM TO THE FLOW 6433 03:52:35,800 --> 03:52:39,240 CYTOMETRY DATA IT'S ABOUT 10% OF 6434 03:52:39,240 --> 03:52:46,160 RED BLOOD CELLS TO MAYBE 20% OF 6435 03:52:46,160 --> 03:52:48,840 RETICS. 6436 03:52:48,840 --> 03:52:50,360 BUT ARE THOSE THE CELLS THAT ARE 6437 03:52:50,360 --> 03:52:50,560 SICKLY. 6438 03:52:50,560 --> 03:52:54,160 WHEN WE LOOK AT CELLS WITH 6439 03:52:54,160 --> 03:52:55,360 MITOCHONDRIA DO THE CELLS THAT 6440 03:52:55,360 --> 03:52:56,600 HAVE THE MITOCHONDRIA ARE THOSE 6441 03:52:56,600 --> 03:53:00,640 THE FIRST ONE TO SICKLE? 6442 03:53:00,640 --> 03:53:02,800 I GUESS YOU CAN SAY NO AND WE 6443 03:53:02,800 --> 03:53:10,120 DON'T COMPLETELY KNOW YET. 6444 03:53:17,560 --> 03:53:18,120 THANK YOU DR. RIVERS. 6445 03:53:18,120 --> 03:53:19,920 >> THANK YOU, SO MUCH. 6446 03:53:19,920 --> 03:53:24,000 >> LET'S MOVE ON TO THE NEXT 6447 03:53:24,000 --> 03:53:27,400 COMPONENT WHICH IS TRANSFORMING 6448 03:53:27,400 --> 03:53:32,160 TECHNOLOGIES TO ASSESS BLOOD 6449 03:53:32,160 --> 03:53:37,280 COMPONENTS IN SICKLE CELL THESE 6450 03:53:37,280 --> 03:53:40,400 DR. SHEEHAN WILL CHAIR THE 6451 03:53:40,400 --> 03:53:41,880 SESSION AND HAS AN EXCELLENT 6452 03:53:41,880 --> 03:53:43,080 PANEL OF SPEAKERS. 6453 03:53:43,080 --> 03:53:43,320 VIVIEN. 6454 03:53:43,320 --> 03:53:44,480 >> THANK YOU SO MUCH. 6455 03:53:44,480 --> 03:53:45,080 CAN EVERYONE SEE THE SLIDES 6456 03:53:45,080 --> 03:53:46,120 OKAY? 6457 03:53:46,120 --> 03:53:48,320 >> YES, WE CAN. 6458 03:53:48,320 --> 03:53:49,800 >> AWESOME. 6459 03:53:49,800 --> 03:53:52,880 SO I WANT TO GIVE A BRIEF 6460 03:53:52,880 --> 03:53:54,560 INTRODUCTION TO THE TALKS. 6461 03:53:54,560 --> 03:53:56,400 IT IS AN INTERESTING AND VARIED 6462 03:53:56,400 --> 03:53:56,600 PANEL. 6463 03:53:56,600 --> 03:53:59,120 WE HAVE TWO ENGINEERS, A 6464 03:53:59,120 --> 03:54:02,400 HEMATOLOGIST, A TRANSPLANTER AND 6465 03:54:02,400 --> 03:54:04,400 PATHOLOGIST BUT WE ARE ALL 6466 03:54:04,400 --> 03:54:06,600 WORKING TOGETHER TO DEVELOP NEW 6467 03:54:06,600 --> 03:54:13,120 DEVICES TO STUDY BLOOD FUNCTION 6468 03:54:13,120 --> 03:54:23,680 IN SICKLE CELL DISEASE AND OUR 6469 03:54:39,760 --> 03:54:44,360 PATIENTS HAVE THE SAME VISCOSITY 6470 03:54:44,360 --> 03:54:48,680 AS A PERSON WITH 45%. 6471 03:54:48,680 --> 03:54:52,240 THEY ALMOST NEED TO HAVE ANEMIA 6472 03:54:52,240 --> 03:54:53,920 TO NOT BE SUPER VISCOUS AND 6473 03:54:53,920 --> 03:54:57,520 THEY'RE RIGID AND DEFORMABLE 6474 03:54:57,520 --> 03:55:00,560 PARTICULARLY WHEN DEOXYGENATED 6475 03:55:00,560 --> 03:55:07,040 AND DAMAGE THE ENDO THELIUM AND 6476 03:55:07,040 --> 03:55:09,920 THE QUALITY OF THE RED BLOOD 6477 03:55:09,920 --> 03:55:20,320 CELLS IS MORE AB NORMAL 6478 03:55:20,880 --> 03:55:22,480 ANDALO-ANTIBODIES CAN BE NEEDED 6479 03:55:22,480 --> 03:55:23,440 TO ADDRESS THE PROBLEM. 6480 03:55:23,440 --> 03:55:26,800 WE'RE LIVING IN A GOLDEN AGE OF 6481 03:55:26,800 --> 03:55:27,720 SICKLE CELL DISEASE WITH THREE 6482 03:55:27,720 --> 03:55:29,920 NEW FDA APPROVED THERAPIES AND 6483 03:55:29,920 --> 03:55:32,120 IT CREATES A NEW NEED. 6484 03:55:32,120 --> 03:55:34,680 NOT ALL NOVEL THERAPIES ARE AS 6485 03:55:34,680 --> 03:55:37,640 EASY TO MONITOR WITH HYDROXY 6486 03:55:37,640 --> 03:55:37,840 URIA. 6487 03:55:37,840 --> 03:55:40,120 WE CAN MAKE SURE OUR PATIENTS 6488 03:55:40,120 --> 03:55:42,800 ARE AT THEIR MAXIMUM TOLERATED 6489 03:55:42,800 --> 03:55:46,040 DOSE AND IT'S NICE TO GET SEE 6490 03:55:46,040 --> 03:55:48,160 WHAT HEMOGLOBIN THEY PRODUCED 6491 03:55:48,160 --> 03:55:49,680 BUT CAN TELL IF THEY'RE TAKING 6492 03:55:49,680 --> 03:55:51,440 IT IN THE RIGHT DOSE WITH JUST 6493 03:55:51,440 --> 03:55:57,160 ROUTINE CONVENTIONAL LABS. 6494 03:55:57,160 --> 03:56:03,280 OUR SICKLING AGENTS AND AL 6495 03:56:03,280 --> 03:56:04,320 GLUTAMINE DON'T HAVE THE AIM 6496 03:56:04,320 --> 03:56:07,240 EASE OF USE AND INTRODUCES THE 6497 03:56:07,240 --> 03:56:08,800 QUESTION OF WHICH THERAPY TO ADD 6498 03:56:08,800 --> 03:56:12,840 ON TO HYDROXYUREA FOR WHICH 6499 03:56:12,840 --> 03:56:14,280 INDIVIDUAL. 6500 03:56:14,280 --> 03:56:19,040 WE HAVE SOME EXISTS TOOLS NOT 6501 03:56:19,040 --> 03:56:20,960 QUITE IN THE CLINICAL LABORATORY 6502 03:56:20,960 --> 03:56:27,280 SPACE AND MANY TRANSLATIONAL 6503 03:56:27,280 --> 03:56:29,920 LABS THAT CAN MEASURE RED CELL 6504 03:56:29,920 --> 03:56:34,120 QUALITY AND THE MOST NOVEL IS 6505 03:56:34,120 --> 03:56:36,440 THE MEASUREMENT OF DEFORMABILITY 6506 03:56:36,440 --> 03:56:38,440 AND SICKLING. 6507 03:56:38,440 --> 03:56:43,160 SOME VERSIONS OF THIS NOT 6508 03:56:43,160 --> 03:56:46,440 INVOLVING OXYGEN GRADIENT ARE IN 6509 03:56:46,440 --> 03:56:50,680 USE. 6510 03:56:50,680 --> 03:56:55,360 VISCOMETER MEASURE THE WHOLE 6511 03:56:55,360 --> 03:56:58,640 BLOOD VISCOSITY AND THE COMMONLY 6512 03:56:58,640 --> 03:57:03,200 USED ADVIA BUT FEW REPORT THE 6513 03:57:03,200 --> 03:57:03,880 DENSE RED BLOOD CELLS WHICH IS 6514 03:57:03,880 --> 03:57:07,280 OF INTEREST TO US LOOKING AT 6515 03:57:07,280 --> 03:57:10,440 SICKLE CELL FUNCTION. 6516 03:57:10,440 --> 03:57:13,080 AND SOMETHING THAT HEMATOLOGY 6517 03:57:13,080 --> 03:57:16,160 ANALYZERS DOES NOT PROVIDE. 6518 03:57:16,160 --> 03:57:18,040 ON THE CUSP OF BECOMING 6519 03:57:18,040 --> 03:57:18,760 COMMERCIALLY AVAILABLE AND 6520 03:57:18,760 --> 03:57:23,240 THERE'S A COMPANY THAT PROVIDES 6521 03:57:23,240 --> 03:57:31,240 THIS SERVICE ON THE CLIA 6522 03:57:31,240 --> 03:57:32,960 CERTIFIED BASIS AND LOOK AT 6523 03:57:32,960 --> 03:57:36,680 PROTEINS THAT LINE THE ENDO 6524 03:57:36,680 --> 03:57:36,880 THELIUM. 6525 03:57:36,880 --> 03:57:43,240 TO SHOW WHY IT FITS IN YOU CAN 6526 03:57:43,240 --> 03:57:53,760 USE THE OXYGEN LEVELS AND CAN 6527 03:57:57,520 --> 03:58:01,160 BEGIN TO INVESTIGATE ADHESIONS 6528 03:58:01,160 --> 03:58:02,720 AND THERE'S A LOT OF 6529 03:58:02,720 --> 03:58:03,520 PATHOPHYSIOLOGY WE'RE NOT ABLE 6530 03:58:03,520 --> 03:58:06,720 TO INTERROGATE WITH THESE MORE 6531 03:58:06,720 --> 03:58:11,840 COMMONLY USED DEVICES. 6532 03:58:11,840 --> 03:58:16,160 SO OXYGEN GRADIENT LOOKS AT THE 6533 03:58:16,160 --> 03:58:18,760 DEFORMITY OF THE RED CELLS AND 6534 03:58:18,760 --> 03:58:19,760 THEY'RE ADDED TO A VISCOUS 6535 03:58:19,760 --> 03:58:27,920 SOLUTION WITHIN THE CHAMBER AND 6536 03:58:27,920 --> 03:58:31,120 IT STRETCHES THE RED BLOOD CELL 6537 03:58:31,120 --> 03:58:39,280 AND OXYGENATED RED BLOOD CELL 6538 03:58:39,280 --> 03:58:42,240 HAS HAVE SOME DEFORMABLE DUE TO 6539 03:58:42,240 --> 03:58:49,160 SICKLING OF THE HEMOGLOBIN. 6540 03:58:49,160 --> 03:58:50,720 THIS GIVES THREE USEFUL 6541 03:58:50,720 --> 03:58:52,600 BIOMARKERS IN CLINICAL TRIALS 6542 03:58:52,600 --> 03:58:56,600 AND LIKELY TO BECOME CERTIFIED 6543 03:58:56,600 --> 03:58:59,600 FUTURE. 6544 03:58:59,600 --> 03:59:06,400 YOU HAVE THE POINT OF AND YOU 6545 03:59:06,400 --> 03:59:11,720 HAVE THE OXYGENATED RED BLOOD 6546 03:59:11,720 --> 03:59:22,160 CELL AND THEN AND MY LAB HAS 6547 03:59:22,160 --> 03:59:23,080 CONTRIBUTED TO SOME CLINICAL 6548 03:59:23,080 --> 03:59:24,040 CORRELATIONS OF THE BIOMARKERS 6549 03:59:24,040 --> 03:59:26,520 SHOWING IN ADULT AND PEDIATRIC 6550 03:59:26,520 --> 03:59:29,240 COHORT THAT INDIVIDUALS WHO HAVE 6551 03:59:29,240 --> 03:59:32,120 HAD TWO OR MORE VOC IN THE PAST 6552 03:59:32,120 --> 03:59:34,160 TWO YEARS HAVE A HIGHER POINT OF 6553 03:59:34,160 --> 03:59:35,400 SICKLING THAN THOSE WHO HAVE NOT 6554 03:59:35,400 --> 03:59:40,160 AND SO THIS INDICATES THAT IF 6555 03:59:40,160 --> 03:59:42,320 YOU'RE RED CELLS SICKLE YOU'RE 6556 03:59:42,320 --> 03:59:43,240 MORE LIKELY TO HAVE A CRISIS IN 6557 03:59:43,240 --> 03:59:48,360 THE PAST TWO YEARS. 6558 03:59:48,360 --> 03:59:52,160 SO SOME CLINICAL CORRELATIONS 6559 03:59:52,160 --> 03:59:53,000 AND EXTENSIVE WORK HAVE BEEN 6560 03:59:53,000 --> 03:59:54,880 DONE ON THE DEVICE AND THERE'S 6561 03:59:54,880 --> 03:59:58,400 LIMITATIONS TO THE CURRENT 6562 03:59:58,400 --> 03:59:59,240 TECHNOLOGIES. 6563 03:59:59,240 --> 04:00:04,880 OXYGEN GRADIENT EKTACYTOMETRY 6564 04:00:04,880 --> 04:00:06,600 REQUIRES AN EXPERIENCED STAFF 6565 04:00:06,600 --> 04:00:07,560 AND GIVES POPULATION LEVEL 6566 04:00:07,560 --> 04:00:09,400 MEASUREMENTS AND A SINGLE VALUE 6567 04:00:09,400 --> 04:00:12,000 FOR THE WHOLE BLOOD SAMPLE NOT 6568 04:00:12,000 --> 04:00:15,160 ALLOWING US TO LOOK AT A SINGLE 6569 04:00:15,160 --> 04:00:17,240 CELL FOR SUB POPULATION LEVEL 6570 04:00:17,240 --> 04:00:26,560 AND USES OSMOLARITY AND HBS 6571 04:00:26,560 --> 04:00:28,680 POLYMERIZATION IS INDIRECTLY 6572 04:00:28,680 --> 04:00:30,520 MEASURED AND THERE'S A 6573 04:00:30,520 --> 04:00:31,320 POPULATION LEVEL MEASUREMENT. 6574 04:00:31,320 --> 04:00:34,160 SO WHAT IS WRONG WITH THE 6575 04:00:34,160 --> 04:00:37,240 POPULATION-LEVEL MEASUREMENT? 6576 04:00:37,240 --> 04:00:39,120 WELL, IT CERTAINLY IS HELPFUL 6577 04:00:39,120 --> 04:00:46,440 AND USEFUL IN LOOKING AT THE RED 6578 04:00:46,440 --> 04:00:47,960 CELL IN ADVANCE AND THERE'S 6579 04:00:47,960 --> 04:00:52,200 VARIABILITY WITH THE POPULATIONS 6580 04:00:52,200 --> 04:01:02,720 AND THE BLOOD YOU MIGHT COLLECT. 6581 04:01:04,520 --> 04:01:07,200 MOST HAVE INTEREST RED CELLS 6582 04:01:07,200 --> 04:01:09,720 VARYING IN AGE. 6583 04:01:09,720 --> 04:01:12,240 IT MAY BECOME IRREVERSIBLY 6584 04:01:12,240 --> 04:01:13,760 SICKLING AND MAY HAVE LOST ITS 6585 04:01:13,760 --> 04:01:15,240 MEMBRANE AND BECOME MORE OF A 6586 04:01:15,240 --> 04:01:16,920 SPHERE MAKING IT DENSER. 6587 04:01:16,920 --> 04:01:18,760 AND THEN OF COURSE THERE'S 6588 04:01:18,760 --> 04:01:21,520 SPECIAL CONDITIONS BASED ON WHAT 6589 04:01:21,520 --> 04:01:24,760 THERAPY THE PATIENTS ARE ON. 6590 04:01:24,760 --> 04:01:28,080 GENE-BASED THERAPY YOU'LL GET A 6591 04:01:28,080 --> 04:01:30,080 LOT OF HETEROGENEITY BASED ON 6592 04:01:30,080 --> 04:01:35,120 THE ASSERTION YOU'RE HAVING IN A 6593 04:01:35,120 --> 04:01:38,000 PARTICULAR STEM CELL IT'S 6594 04:01:38,000 --> 04:01:44,680 DERIVED FROM AND CRISPR CAS 6595 04:01:44,680 --> 04:01:46,840 EDITING AND LOOKING AT DRUG 6596 04:01:46,840 --> 04:01:47,120 OCCUPANCY. 6597 04:01:47,120 --> 04:01:52,240 IT WOULD BE HELPFUL TO HAVE 6598 04:01:52,240 --> 04:01:54,880 SINGLE CELL OR SUB POPULATION 6599 04:01:54,880 --> 04:01:55,520 LEVEL MEASUREMENTS TO BETTER 6600 04:01:55,520 --> 04:01:57,800 EVALUATE NOVEL THERAPIES. 6601 04:01:57,800 --> 04:01:59,760 ONE OF OUR SPEAKERS HAS 6602 04:01:59,760 --> 04:02:01,280 DEVELOPED THE OCCLUSION CHIP 6603 04:02:01,280 --> 04:02:03,200 WHICH ADDRESSES SOME OF THESE 6604 04:02:03,200 --> 04:02:07,840 UNMET NEEDS. 6605 04:02:07,840 --> 04:02:10,600 IT DOES MEASURE RED BLOOD CELL 6606 04:02:10,600 --> 04:02:14,880 MECHANICALLY IN TERMS OF THE 6607 04:02:14,880 --> 04:02:17,920 COST AND AUXILIARY EQUIPMENT 6608 04:02:17,920 --> 04:02:21,640 NEEDED IT CAN REPLACE MICROSCOPY 6609 04:02:21,640 --> 04:02:25,400 AND THE TRANSPLANTER WILL SHOW 6610 04:02:25,400 --> 04:02:28,360 HOW TOGETHER SHE AND I HAVE BEEN 6611 04:02:28,360 --> 04:02:33,200 USING RHEOLOGY TO ASSESS 6612 04:02:33,200 --> 04:02:37,720 SELF-BASED THERAPIES AND HOW THE 6613 04:02:37,720 --> 04:02:43,960 ASSAYS CAN LOOK AT IF THERE'S 6614 04:02:43,960 --> 04:02:46,160 CURES IN DISEASE AND ALSO HOW BY 6615 04:02:46,160 --> 04:02:47,440 USING THE DIFFERENCE IN 6616 04:02:47,440 --> 04:02:50,800 DENSITIES BETWEEN EDITED AND 6617 04:02:50,800 --> 04:02:54,520 UNEDITED CELLS ARE TRANSFUSED 6618 04:02:54,520 --> 04:02:56,240 HEMOGLOBIN AA CELLS AND MIXED 6619 04:02:56,240 --> 04:02:57,640 RECIPIENT SS CELLS WE CAN USE 6620 04:02:57,640 --> 04:03:00,240 THE DENSITY TO SEPARATE OUT SUB 6621 04:03:00,240 --> 04:03:02,240 POPULATIONS AND STILL BE ABLE TO 6622 04:03:02,240 --> 04:03:04,960 USE OUR CURRENT VIROLOGIC 6623 04:03:04,960 --> 04:03:10,160 DEVICES WITH THE REFINEMENT OF 6624 04:03:10,160 --> 04:03:11,720 ACHIEVING SEPARATION BY RED CELL 6625 04:03:11,720 --> 04:03:15,440 FUNCTION IN THIS CASE DENSITY. 6626 04:03:15,440 --> 04:03:18,520 AND THEY'LL PRESENT SEVERAL NEW 6627 04:03:18,520 --> 04:03:21,720 DEVICES THAT HAVE BEEN DEVELOPED 6628 04:03:21,720 --> 04:03:23,440 IN THE LAB THAT ARE THE 6629 04:03:23,440 --> 04:03:28,200 PROTOTYPE OR TRANSLATION STAGE. 6630 04:03:28,200 --> 04:03:31,960 IT CAN SHOW RED CELL DEFORMITY 6631 04:03:31,960 --> 04:03:33,720 ON A SINGLE CELL LEVEL AND 6632 04:03:33,720 --> 04:03:36,720 ADHESION AND LOOK AT VISCOSITY 6633 04:03:36,720 --> 04:03:38,440 BY DIFFUSION RATHER THAN BY 6634 04:03:38,440 --> 04:03:42,480 SHEAR AND LOOKING AT THE EFFECTS 6635 04:03:42,480 --> 04:03:45,920 OF RED CELLS ON THE ENDO THELIUM 6636 04:03:45,920 --> 04:03:48,760 BUT WHAT DOES THE RED CELL DO 6637 04:03:48,760 --> 04:03:52,160 AND WHAT EFFECTS ON PERMEABILITY 6638 04:03:52,160 --> 04:03:53,640 AND HOW TO MEASURE THE 6639 04:03:53,640 --> 04:03:57,120 DYSFUNCTION AND LOOK AT AN 6640 04:03:57,120 --> 04:04:00,880 AUTOMATED ALGORITHM BASED WAY OF 6641 04:04:00,880 --> 04:04:03,440 USING DATA FOR DATA ANALYSIS AND 6642 04:04:03,440 --> 04:04:04,800 INDIVIDUAL CELL COUNT AND OUR 6643 04:04:04,800 --> 04:04:08,000 PATHOLOGIST HAS BEEN DEVELOPING 6644 04:04:08,000 --> 04:04:10,200 A WAY TO ENGINEER RED CELLS 6645 04:04:10,200 --> 04:04:13,600 BEING AWARE INDIVIDUALS WITH 6646 04:04:13,600 --> 04:04:16,600 SICKLE CELL DISEASE IS THE 6647 04:04:16,600 --> 04:04:27,480 HIGHEST RATES OF AL FALO -- OF 6648 04:04:36,600 --> 04:04:37,280 ALLO-IMMUNIZATION AND THEY'LL 6649 04:04:37,280 --> 04:04:41,160 DEVELOP WORK THAT COULD BE A 6650 04:04:41,160 --> 04:04:44,440 GAME CHANGER FOR TRANSFUSION 6651 04:04:44,440 --> 04:04:46,240 MEDICINE. 6652 04:04:46,240 --> 04:04:52,240 ANOTHER COLLEAGUE WILL SHOW HBS 6653 04:04:52,240 --> 04:04:55,320 POLYMERIZATION MEETING NEEDS TO 6654 04:04:55,320 --> 04:04:57,560 HAVE SINGLE CELL LEVEL TO ASSESS 6655 04:04:57,560 --> 04:05:00,040 HOW EFFECTIVE A THERAPY HAS BEEN 6656 04:05:00,040 --> 04:05:06,440 ON PREVENTING POLYMERIZATION AND 6657 04:05:06,440 --> 04:05:10,200 CAPTURES THE IMPACT OF THE 6658 04:05:10,200 --> 04:05:11,760 UNEQUAL DISTRIBUTION WHETHER 6659 04:05:11,760 --> 04:05:14,240 THREW INDUCTION OR GENE 6660 04:05:14,240 --> 04:05:15,400 STRATEGIES AND SHOW THE DEVICE 6661 04:05:15,400 --> 04:05:18,120 SHOWING MEASUREMENTS OF 6662 04:05:18,120 --> 04:05:20,440 DEFORMABILITY AND VISCOSITY 6663 04:05:20,440 --> 04:05:25,360 MEASUREMENTS UNDER HYPOXIA. 6664 04:05:25,360 --> 04:05:26,520 OUR CURRENT COMMERCIALLY 6665 04:05:26,520 --> 04:05:28,840 AVAILABLE DEVICES NEED FURTHER 6666 04:05:28,840 --> 04:05:29,120 VALIDATION. 6667 04:05:29,120 --> 04:05:30,720 THE BEST THING TO BE ABLE TO 6668 04:05:30,720 --> 04:05:33,960 SHOW IS THE CHANGING BIOMARKERS 6669 04:05:33,960 --> 04:05:35,920 CHANGES CLINICAL OUTCOMES NOT 6670 04:05:35,920 --> 04:05:38,400 JUST IN ASSOCIATION BUT WE 6671 04:05:38,400 --> 04:05:40,200 ACTUALLY ACHIEVE A CLINICAL 6672 04:05:40,200 --> 04:05:42,320 DIFFERENCE IF WE LOWER THE 6673 04:05:42,320 --> 04:05:42,800 POINTS, FOR EXAMPLE. 6674 04:05:42,800 --> 04:05:46,240 AND CAN THESE BIOMARKERS SERVE 6675 04:05:46,240 --> 04:05:47,600 AS CLINICAL TRIAL END POINTS AND 6676 04:05:47,600 --> 04:05:50,440 CAN THEY BE USED TO DEFINE 6677 04:05:50,440 --> 04:05:54,160 PATIENT CARE AND HAVE A CURE 6678 04:05:54,160 --> 04:05:54,400 INTACT? 6679 04:05:54,400 --> 04:05:56,680 WE NEED TO FURTHER DEVELOP THE 6680 04:05:56,680 --> 04:05:58,920 NOVEL DEVICES WITH SINGLE CELL 6681 04:05:58,920 --> 04:06:02,440 AND SUBPOPULATION CAPABILITIES 6682 04:06:02,440 --> 04:06:07,160 AND FURTHER EXPLORE RED CELL 6683 04:06:07,160 --> 04:06:09,000 ENDOTHELIAL INTERACTIONS AND THE 6684 04:06:09,000 --> 04:06:10,320 DEVICES WE'RE GOING TO TALK 6685 04:06:10,320 --> 04:06:12,280 ABOUT AND HEAR ABOUT TODAY HAVE 6686 04:06:12,280 --> 04:06:15,160 ALREADY THE POTENTIAL TO EXPAND 6687 04:06:15,160 --> 04:06:17,960 WHAT ASPECTS OF RED CELL 6688 04:06:17,960 --> 04:06:19,000 PATHOPHYSIOLOGY WE CAN EXPLORE. 6689 04:06:19,000 --> 04:06:20,440 THE GREEN BOX ARE THE NEW 6690 04:06:20,440 --> 04:06:22,240 DEVICES WE'LL BE TALKING ABOUT 6691 04:06:22,240 --> 04:06:24,240 TODAY AND THE BLUE ARE THE 6692 04:06:24,240 --> 04:06:26,120 EXISTING COMMERCIALLY AVAILABLE 6693 04:06:26,120 --> 04:06:28,640 ONES THAT WE HAVE GREATER 6694 04:06:28,640 --> 04:06:29,400 FAMILIARITY WITH. 6695 04:06:29,400 --> 04:06:34,240 WITH THAT, I WILL HAND THIS OVER 6696 04:06:34,240 --> 04:06:39,760 TO TO OUR NEXT SPEAKER DR. UMUT 6697 04:06:39,760 --> 04:06:41,800 GURKAN FROM CASE WESTERN 6698 04:06:41,800 --> 04:06:42,120 UNIVERSITY. 6699 04:06:42,120 --> 04:06:43,760 >> THANK YOU VERY MUCH, VIVIEN. 6700 04:06:43,760 --> 04:06:44,720 GOOD AFTERNOON, ALL. 6701 04:06:44,720 --> 04:06:49,080 MY NAME IS UMUT GURKAN A 6702 04:06:49,080 --> 04:06:49,840 PROFESSOR AT CASE WESTERN 6703 04:06:49,840 --> 04:06:50,800 INVESTIGATION AND I'D LIKE TO 6704 04:06:50,800 --> 04:06:57,040 TALK ABOUT OCCLUSION CHIP IN NEW 6705 04:06:57,040 --> 04:07:01,640 FUNCTIONAL COMPLEMENTARY 6706 04:07:01,640 --> 04:07:02,440 EKTACYTOMETRY FOR ASSESSING RED 6707 04:07:02,440 --> 04:07:03,000 CELL HEALTH IN SICKLE CELL 6708 04:07:03,000 --> 04:07:13,120 DISEASE. 6709 04:07:22,320 --> 04:07:25,800 THE COMPROMISED RED BLOOD CELLS 6710 04:07:25,800 --> 04:07:26,600 LEAD TO OCCLUSION AND HIGH POM 6711 04:07:26,600 --> 04:07:27,160 POX YA. 6712 04:07:27,160 --> 04:07:29,760 WE THINK THE OCCLUSION OF 6713 04:07:29,760 --> 04:07:31,800 CAPILLARIES CAN BE USED AS A 6714 04:07:31,800 --> 04:07:36,600 BIOMARKER TO IDENTIFY PATIENTS 6715 04:07:36,600 --> 04:07:39,240 WITH POOR DEFORMABILITY OR HIGH 6716 04:07:39,240 --> 04:07:40,360 VISCOSITY AND TO SELECT AND 6717 04:07:40,360 --> 04:07:44,360 MONITOR THERAPIES. 6718 04:07:44,360 --> 04:07:47,760 WE HAVE DEVELOPED AND TRANSLATED 6719 04:07:47,760 --> 04:07:51,480 A NUMBER OF BIO CHIP ASSAY TO 6720 04:07:51,480 --> 04:07:52,280 MEASURE RED BLOOD CELL HEALTH 6721 04:07:52,280 --> 04:07:55,920 WITH EMERGING THERAPIES. 6722 04:07:55,920 --> 04:08:00,360 THESE ASSAYS MEASURE RED CELL IN 6723 04:08:00,360 --> 04:08:02,440 FLOW AND MICROCAPILLARY 6724 04:08:02,440 --> 04:08:05,320 OCCLUSION IN FLOW. 6725 04:08:05,320 --> 04:08:06,600 TODAY I'LL FOCUS ON OCCLUSION 6726 04:08:06,600 --> 04:08:10,680 INDEX MEASUREMENT WHICH IS BASED 6727 04:08:10,680 --> 04:08:14,960 ON RED BLOOD CELL AND 6728 04:08:14,960 --> 04:08:16,120 MICROCAPILLARY FLOW. 6729 04:08:16,120 --> 04:08:19,360 MEASURE OCCLUSION INDEX USING A 6730 04:08:19,360 --> 04:08:22,040 DEVICE WE CALL OCCLUSION CHIP. 6731 04:08:22,040 --> 04:08:24,520 IT'S A FUNCTIONAL MICROCAPILLARY 6732 04:08:24,520 --> 04:08:27,960 OCCLUSION ASSAY THAT INCLUDES 6733 04:08:27,960 --> 04:08:29,360 NON-UNIFORM NARROW CAPILLARY 6734 04:08:29,360 --> 04:08:34,040 OPENINGS AND PASSAGEWAYS. 6735 04:08:34,040 --> 04:08:37,240 IT ALLOWS THE ASSESSMENT OF RED 6736 04:08:37,240 --> 04:08:39,160 CELLS AS THEY PASS THROUGH 6737 04:08:39,160 --> 04:08:49,600 NARROW CAPILLARY OPENINGS. 6738 04:08:50,880 --> 04:08:52,120 IT ALLOWS TESTING. 6739 04:08:52,120 --> 04:08:55,360 HERE'S THE WORKING PRINCIPLE OF 6740 04:08:55,360 --> 04:09:01,920 OCCLUSION CHIP WHERE THE STIFF 6741 04:09:01,920 --> 04:09:02,600 RED BLOOD CELLS OCCLUDE THE UP 6742 04:09:02,600 --> 04:09:04,520 STREAM CAPILLARIES AND AS MORE 6743 04:09:04,520 --> 04:09:07,240 FLOW IN THE CHIP THEY NAVIGATE 6744 04:09:07,240 --> 04:09:11,320 PAST THE UPSTREAM BLOCKAGES TO 6745 04:09:11,320 --> 04:09:11,640 CAPILLARIES. 6746 04:09:11,640 --> 04:09:13,800 AT THE END OF THE TEST WE 6747 04:09:13,800 --> 04:09:15,240 PERFORM AN ASSESSMENT AND 6748 04:09:15,240 --> 04:09:18,040 QUANTIFICATION OF THE RESULTS. 6749 04:09:18,040 --> 04:09:21,440 THIS ASSAY HAS A STANDARDIZED 6750 04:09:21,440 --> 04:09:23,160 OCCLUSION OF THE CAPILLARY FROM 6751 04:09:23,160 --> 04:09:25,960 WHICH THE OCCLUSION INDEX CAN BE 6752 04:09:25,960 --> 04:09:27,040 CALCULATED. 6753 04:09:27,040 --> 04:09:28,560 IT REPRESENTS THE PERCENT 6754 04:09:28,560 --> 04:09:33,480 OCCLUSION OF THE CAPILLARY AND 6755 04:09:33,480 --> 04:09:34,240 IT IS GENERALIZABLE TO ANY 6756 04:09:34,240 --> 04:09:38,440 ARTIFICIAL CAPILLARY NETWORK 6757 04:09:38,440 --> 04:09:41,040 WHERE THE HIGH OCCLUSION MEANS 6758 04:09:41,040 --> 04:09:44,120 THE BLOOD SAMPLE CONTAINS A 6759 04:09:44,120 --> 04:09:46,280 LARGE NUMBER OF STIFF RED BLOOD 6760 04:09:46,280 --> 04:09:46,800 CELLS RESULT IN THE HIGH 6761 04:09:46,800 --> 04:09:50,440 OCCLUSION INDEX. 6762 04:09:50,440 --> 04:09:54,120 WE HAVE PERFORMED EXTENSIVE 6763 04:09:54,120 --> 04:09:56,760 ANALYTICAL VALIDATION AND HERE'S 6764 04:09:56,760 --> 04:09:58,280 A SUMMARY OF THE TEST PERFORMED 6765 04:09:58,280 --> 04:10:04,200 WHERE WE USED RIGID MICROBEADS 6766 04:10:04,200 --> 04:10:06,040 MIXED WITH HEALTHY RED BLOOD 6767 04:10:06,040 --> 04:10:08,440 CELLS TO TEST THE RETENTION 6768 04:10:08,440 --> 04:10:15,480 MECHANISM BY THE CAB LIR -- 6769 04:10:15,480 --> 04:10:17,200 CAPILLARIES MICROSPHERES ARE 6770 04:10:17,200 --> 04:10:23,040 RETAINED AT 8 MICROMETER OPENING 6771 04:10:23,040 --> 04:10:26,280 CAPILLARIES. 6772 04:10:26,280 --> 04:10:31,320 6 MICROMETER BEADS HAVE CAP 6773 04:10:31,320 --> 04:10:31,800 LIRLIR 6774 04:10:32,800 --> 04:10:35,880 -- CAPILLARIES AND OCCLUSION 6775 04:10:35,880 --> 04:10:37,560 DETECTS RED BLOOD CELL 6776 04:10:37,560 --> 04:10:42,160 DEFORMABILITY IN A WIDE RANGE OF 6777 04:10:42,160 --> 04:10:44,320 PATHOLOGICAL SCENARIOS INCLUDING 6778 04:10:44,320 --> 04:10:46,160 ARTIFICIAL MEMBRANE STIFFENING, 6779 04:10:46,160 --> 04:10:49,480 HEAVY METAL TOXINS, STORAGE 6780 04:10:49,480 --> 04:10:51,240 LESIONS, MALARIA AND SICKLE CELL 6781 04:10:51,240 --> 04:10:53,600 DISEASE. 6782 04:10:53,600 --> 04:10:55,280 SO THIS ASSAY SHOULD BE 6783 04:10:55,280 --> 04:10:59,480 APPLICABLE TO DIFFERENT TYPES OF 6784 04:10:59,480 --> 04:11:03,840 DISEASES AND PATHOLOGIES THAT 6785 04:11:03,840 --> 04:11:06,800 AFFECT OCCLUSION IN CAPILLARIES. 6786 04:11:06,800 --> 04:11:09,720 IT'S SIGNIFICANTLY GREATER IN 6787 04:11:09,720 --> 04:11:13,000 INDIVIDUALS WITH SICKLE CELL 6788 04:11:13,000 --> 04:11:16,240 DISEASE COMPARED TO HBSS AND 6789 04:11:16,240 --> 04:11:19,040 HBSS OCCLUSION INDEX CAN BE 6790 04:11:19,040 --> 04:11:22,240 AROUND 3% MEANING 3% OF THE 6791 04:11:22,240 --> 04:11:27,640 AVAILABLE CAPILLARY OPENINGS ARE 6792 04:11:27,640 --> 04:11:31,240 OCCLUDED BY THE STIFF SICKLE RED 6793 04:11:31,240 --> 04:11:36,920 BLOOD CELL AND IT CAN BE USED TO 6794 04:11:36,920 --> 04:11:38,600 STRATIFY PATIENTS WHICH WE HAVE 6795 04:11:38,600 --> 04:11:42,760 SHOWN ASSOCIATED WITH DISEASE 6796 04:11:42,760 --> 04:11:43,240 SEVERITY. 6797 04:11:43,240 --> 04:11:49,640 HIGH OCCLUSION INDEX BEYOND THE 6798 04:11:49,640 --> 04:11:50,520 CERTAIN THRESHOLD ASSOCIATES 6799 04:11:50,520 --> 04:11:57,720 WITH HIGHER HDH AND RETICULOCYTE 6800 04:11:57,720 --> 04:12:00,440 COUNTS AND LOWER VALUES IN THE 6801 04:12:00,440 --> 04:12:02,760 INDIVIDUALS AND THE MEASUREMENT 6802 04:12:02,760 --> 04:12:04,480 OF OCCLUSION INDEX IN HYPOXIA IS 6803 04:12:04,480 --> 04:12:09,880 A NEW AND UNIQUE DIMENSION TO 6804 04:12:09,880 --> 04:12:15,160 ASSESSING RED BLOOD CELL C 6805 04:12:15,160 --> 04:12:16,840 CAPILLARY OCCLUSION IT'S 6806 04:12:16,840 --> 04:12:18,560 MEASURED WITH THE USUAL HYPOXIA 6807 04:12:18,560 --> 04:12:23,920 LEVELS THAT RESULT IN 8% TO 3% 6808 04:12:23,920 --> 04:12:26,160 SPO2 OR SATURATION WITH 6809 04:12:26,160 --> 04:12:28,840 HEMOGLOBIN WITH OXYGEN. 6810 04:12:28,840 --> 04:12:31,600 IT'S MUCH HIGHER THAN THE 6811 04:12:31,600 --> 04:12:35,120 OCCLUSION INDEX IN HDSS AND 6812 04:12:35,120 --> 04:12:37,680 ASSOCIATED WITH THE HEMOGLOBIN S 6813 04:12:37,680 --> 04:12:39,240 PERCENTAGE IN INDIVIDUALS WITH 6814 04:12:39,240 --> 04:12:40,360 SICKLE CELL DISEASE. 6815 04:12:40,360 --> 04:12:50,160 WE HAVE SHOWN BOTH EKTACYTOMETRY 6816 04:12:50,160 --> 04:12:52,240 DR. VIVIEN SHEEHAN TALKED ABOUT 6817 04:12:52,240 --> 04:12:56,560 AND TALKED ABOUT DIFFERENTIATION 6818 04:12:56,560 --> 04:12:58,800 OF THE HEALTHY RED BLOOD CELLS 6819 04:12:58,800 --> 04:13:02,640 AND OTHERS ARE SHOWN IN THIS 6820 04:13:02,640 --> 04:13:03,240 FIGURE. 6821 04:13:03,240 --> 04:13:05,880 WE HAVE TESTED THE 6822 04:13:05,880 --> 04:13:07,480 REPRODUCIBILITY OF THE CHIP AND 6823 04:13:07,480 --> 04:13:10,680 COMPARED IT WITH EKTACYTOMETRY. 6824 04:13:10,680 --> 04:13:13,920 THE AVERAGE COEFFICIENT IN 6825 04:13:13,920 --> 04:13:16,240 OCCLUSION CHIP WAS LESS THAN 20% 6826 04:13:16,240 --> 04:13:20,760 WHEREAS IT WAS AROUND 2% FOR 6827 04:13:20,760 --> 04:13:21,440 EKTACYTOMETRY MEASUREMENTS WHICH 6828 04:13:21,440 --> 04:13:27,360 WE THINK IS ATTRIBUTABLE TO THE 6829 04:13:27,360 --> 04:13:29,600 HIGHER OCCLUSION CHIP WHICH MAY 6830 04:13:29,600 --> 04:13:30,600 INDUCE OR RESULT IN HIGHER 6831 04:13:30,600 --> 04:13:32,840 VARIATION IN THE MEASUREMENTS OF 6832 04:13:32,840 --> 04:13:34,240 THE EXPERIMENTS. 6833 04:13:34,240 --> 04:13:36,800 LESS THAN 20% COEFFICIENT OF 6834 04:13:36,800 --> 04:13:43,240 VARIATION IS STILL AN ACCEPTABLE 6835 04:13:43,240 --> 04:13:45,160 COEFFICIENT VARIATION ACCORDING 6836 04:13:45,160 --> 04:13:46,720 TO THE DEVICE REGULATIONS. 6837 04:13:46,720 --> 04:13:50,960 AND I WILL TALK ABOUT THE HIGHER 6838 04:13:50,960 --> 04:13:52,840 SENSITIVITY OF OCCLUSION CHIP IN 6839 04:13:52,840 --> 04:13:53,720 THE NEXT SIDE. 6840 04:13:53,720 --> 04:13:55,360 TO TEST THE OCCLUSION CHIP AND 6841 04:13:55,360 --> 04:13:58,880 COMPARE IT WITH THE 6842 04:13:58,880 --> 04:14:01,800 EKTACYTOMETRY, WE TESTED -- WE 6843 04:14:01,800 --> 04:14:07,080 EDIT SMALL FRACTIONS OF STIFF 6844 04:14:07,080 --> 04:14:11,240 RED BLOOD CELLS AND MIXED THEM 6845 04:14:11,240 --> 04:14:14,520 WITH HEALTHY RED BLOOD CELLS AT 6846 04:14:14,520 --> 04:14:15,880 VARYING PERCENTAGES. 6847 04:14:15,880 --> 04:14:20,320 SMALL PERCENT RANGING FROM 0% TO 6848 04:14:20,320 --> 04:14:23,240 0.1% AND 1%. 6849 04:14:23,240 --> 04:14:25,320 THE RANGE OF STIFF RED BLOOD 6850 04:14:25,320 --> 04:14:27,960 CELLS MIXED WITH HEALTHY WAS IN 6851 04:14:27,960 --> 04:14:30,560 THE RANGE 0 TO 1%. 6852 04:14:30,560 --> 04:14:35,240 OCCLUSION CHIP IS SENSITIVE TO 6853 04:14:35,240 --> 04:14:36,400 SMALL FRACTIONS OF RED BLOOD 6854 04:14:36,400 --> 04:14:40,280 CELLS WITH STIFFNESS AND 6855 04:14:40,280 --> 04:14:42,880 SENSITIVELY IS AROUND 0.1%. 6856 04:14:42,880 --> 04:14:46,720 EKTACYTOMETRY IN THIS CASE DID 6857 04:14:46,720 --> 04:14:49,160 NOT DETECT A DIFFERENCE FOR THE 6858 04:14:49,160 --> 04:14:50,800 SMALL FRACTION STIFF RED BLOOD 6859 04:14:50,800 --> 04:14:51,400 CELLS MIXED WITH HEALTHY RED 6860 04:14:51,400 --> 04:14:57,920 BLOOD CELLS. 6861 04:14:57,920 --> 04:15:02,880 NEXT WE COMPARED HYPOXIC 6862 04:15:02,880 --> 04:15:06,240 OCCLUSION CHIP FOR SAMPLES THAT 6863 04:15:06,240 --> 04:15:09,120 ARE HBAA, HEALTHY NORMAL RED 6864 04:15:09,120 --> 04:15:19,480 BLOOD CELLS AND HBSS 6865 04:15:24,800 --> 04:15:25,720 POST-TRANSPLANT. 6866 04:15:25,720 --> 04:15:29,040 AND OCCLUSION CHIP DETECTED THIS 6867 04:15:29,040 --> 04:15:36,000 IN HBSA AND POST-BONE MARROW 6868 04:15:36,000 --> 04:15:37,480 TRANSPLANT AND LOWER OXYGEN 6869 04:15:37,480 --> 04:15:39,840 GRADIENT EKTACYTOMETRY SHOWED 6870 04:15:39,840 --> 04:15:44,600 SIMILAR RESULTS FOR HBA, HBAS 6871 04:15:44,600 --> 04:15:49,840 AND HBSS SHOWN HERE ON THE LEFT. 6872 04:15:49,840 --> 04:15:52,440 WE THINK IT'S COMPLEMENTARY TO 6873 04:15:52,440 --> 04:15:57,160 LOWER CYTOMETRY FOR PROBING 6874 04:15:57,160 --> 04:15:59,480 ABNORMALITIES WHEN PERCENTAGE IS 6875 04:15:59,480 --> 04:16:03,120 LOW OR AROUND THE UNHEALTHY RED 6876 04:16:03,120 --> 04:16:04,240 BLOOD CELL PERCENTAGE IS LOW IN 6877 04:16:04,240 --> 04:16:07,320 THE BLOOD SAMPLES. 6878 04:16:07,320 --> 04:16:09,200 WE ALSO HAVE SHOWN OCCLUSION CAN 6879 04:16:09,200 --> 04:16:13,080 BE USED FOR TESTING OF NEW 6880 04:16:13,080 --> 04:16:15,200 PHARMACOLOGIC INTERVENTIONS SUCH 6881 04:16:15,200 --> 04:16:20,240 AS THE HEMOGLOBIN OXYGEN 6882 04:16:20,240 --> 04:16:25,640 MODIFYING DRUG WHERE IT'S 6883 04:16:25,640 --> 04:16:27,640 SIGNIFICANTLY REDUCED IN THE RED 6884 04:16:27,640 --> 04:16:29,560 BLOOD CELL AS SHOWN IN THE 6885 04:16:29,560 --> 04:16:29,800 FIGURE. 6886 04:16:29,800 --> 04:16:32,600 ALL PREVIOUS RESULTS OF 6887 04:16:32,600 --> 04:16:34,560 OCCLUSION INDEX MEASUREMENT RELY 6888 04:16:34,560 --> 04:16:36,720 ON HIGH RESOLUTION OCCLUSION 6889 04:16:36,720 --> 04:16:40,320 CHIP WHICH IS ESSENTIALLY A 6890 04:16:40,320 --> 04:16:42,560 MICROFLUIDIC NETWORK OF 6891 04:16:42,560 --> 04:16:44,840 CAPILLARY OPENINGS AND LIMITS 6892 04:16:44,840 --> 04:16:48,600 THE ACCESSIBILITY OF THE 6893 04:16:48,600 --> 04:16:51,240 TECHNOLOGY AND ITS USE IN THE 6894 04:16:51,240 --> 04:16:51,480 CLINIC. 6895 04:16:51,480 --> 04:16:54,440 FOR THIS REASON WE HAVE RECENTLY 6896 04:16:54,440 --> 04:16:56,440 DEVELOPED AN METHOD TO ELIMINATE 6897 04:16:56,440 --> 04:17:01,200 THE NEED FOR MICROSCOPY AND 6898 04:17:01,200 --> 04:17:03,240 ALLOW A PORTABLE POINT-OF-CARE 6899 04:17:03,240 --> 04:17:05,120 UTILIZATION OF THE TECHNOLOGY. 6900 04:17:05,120 --> 04:17:10,200 IN THIS METH IT'S MEASURED 6901 04:17:10,200 --> 04:17:15,240 BETWEEN WHAT IS DETECTED AND THE 6902 04:17:15,240 --> 04:17:18,880 READING FROM THE LEVELS IN THE 6903 04:17:18,880 --> 04:17:21,760 CAPILLARY OPENINGS AND THE 6904 04:17:21,760 --> 04:17:23,000 MEASUREMENTS CORRELATE WELL WITH 6905 04:17:23,000 --> 04:17:26,840 THE OPTICAL OCCLUSION INDEX 6906 04:17:26,840 --> 04:17:28,240 MEASUREMENT DETERMINED BY HIGH 6907 04:17:28,240 --> 04:17:30,760 RESOLUTION OPTICAL MICROSCOPY 6908 04:17:30,760 --> 04:17:32,760 AND HAVE SHOWN THE CORRELATION 6909 04:17:32,760 --> 04:17:39,240 CALLS FOR HBA AND HBSS SAMPLES 6910 04:17:39,240 --> 04:17:44,280 AND OTHER ABNORMALITY AND THIS 6911 04:17:44,280 --> 04:17:46,920 SUGGESTS THE READ OUT IS AS 6912 04:17:46,920 --> 04:17:52,840 RELIABLE AS OPTICAL MICRO S 6913 04:17:52,840 --> 04:17:53,520 MICROSCOPY-BASED READ OUT. 6914 04:17:53,520 --> 04:17:56,000 THE RED CELL INDEX ASSOCIATED 6915 04:17:56,000 --> 04:17:56,720 WITH DISEASE SEVERITY FOR 6916 04:17:56,720 --> 04:18:01,240 EXAMPLE IN THIS CASE I SHOWED 6917 04:18:01,240 --> 04:18:03,680 TWO EXAMPLES WHERE HIGH 6918 04:18:03,680 --> 04:18:06,680 ELECTRONIC INDEX ASSOCIATES WITH 6919 04:18:06,680 --> 04:18:10,200 HIGH LEVELS OF THE COUNTS AND 6920 04:18:10,200 --> 04:18:12,280 LDH IN SICKLE CELL DISEASE. 6921 04:18:12,280 --> 04:18:15,240 IN SUMMARY, WE ARE VERY CLOSE TO 6922 04:18:15,240 --> 04:18:18,720 ACHIEVING A PORTABLE, ACCESSIBLE 6923 04:18:18,720 --> 04:18:20,880 AND SENSITIVE RED BLOOD CELL 6924 04:18:20,880 --> 04:18:21,680 ASSESSMENT AT THE POINT-OF-CARE 6925 04:18:21,680 --> 04:18:27,600 WHICH WILL BE ENABLED BY THE 6926 04:18:27,600 --> 04:18:29,120 MIRCA TECHNOLOGY. 6927 04:18:29,120 --> 04:18:31,200 THE FUTURE WORK INCLUDES 6928 04:18:31,200 --> 04:18:34,360 CLINICAL VALIDATION OF 6929 04:18:34,360 --> 04:18:37,520 ADAPTATION TO CLINICAL STUDIES 6930 04:18:37,520 --> 04:18:39,240 AND TRIALS. 6931 04:18:39,240 --> 04:18:42,760 A PROTOTYPE ARE CURRENTLY BEING 6932 04:18:42,760 --> 04:18:44,200 VALIDATED AT DR. VIVIEN 6933 04:18:44,200 --> 04:18:47,240 SHEEHAN'S LAB AT EMORY AND THIS 6934 04:18:47,240 --> 04:18:52,720 IS SUPPORTED BY THE MICROSYSTEMS 6935 04:18:52,720 --> 04:18:55,360 ENGINEER POINT-OF-CARE 6936 04:18:55,360 --> 04:18:56,520 TECHNOLOGIES. 6937 04:18:56,520 --> 04:18:57,160 THANK YOU VERY MUCH FOR YOUR 6938 04:18:57,160 --> 04:18:58,160 ATTENTION AND PLEASE LET ME KNOW 6939 04:18:58,160 --> 04:19:08,600 IF YOU HAVE ANY QUESTIONS. 6940 04:19:10,360 --> 04:19:13,080 >> I HAD A QUESTION FOR YOU. 6941 04:19:13,080 --> 04:19:17,360 I WAS LOOKING AT THE GLUTEROL 6942 04:19:17,360 --> 04:19:19,840 DATA AND LOOKING AT THIS 6943 04:19:19,840 --> 04:19:20,880 DIFFERENT WAYS OF MEASURING THIS 6944 04:19:20,880 --> 04:19:22,840 MAY BE IMPACTING THIS AND IT'S 6945 04:19:22,840 --> 04:19:29,400 NOT JUST VERY WELL CAPTURED BY 6946 04:19:29,400 --> 04:19:34,080 THE STRATEGY AND BY THE 6947 04:19:34,080 --> 04:19:35,800 DEFORMABILITY STRATEGY. 6948 04:19:35,800 --> 04:19:36,880 >> YES. 6949 04:19:36,880 --> 04:19:42,840 >> AND NOT SO MUCH A SENSITIVITY 6950 04:19:42,840 --> 04:19:48,440 THI 6951 04:19:48,440 --> 04:19:48,760 THING. 6952 04:19:48,760 --> 04:19:54,800 >> I THINK WE NEED TO FOCUS ON 6953 04:19:54,800 --> 04:20:02,200 DIFFERENT ASPECTS AND THE 6954 04:20:02,200 --> 04:20:03,880 DEFORMABILITIES MAY BE THE 6955 04:20:03,880 --> 04:20:09,200 HIGHLIGHT OF WHAT WE HEARD ABOUT 6956 04:20:09,200 --> 04:20:19,480 IN THE WORKSHOP. 6957 04:20:27,040 --> 04:20:31,240 >> HOW DOES THIS COMPARE TO 6958 04:20:31,240 --> 04:20:41,800 HEMOGLOBIN TYPE AND EXPRESSION. 6959 04:20:45,800 --> 04:20:48,160 >> THEY PRODUCE DIFFERENT 6960 04:20:48,160 --> 04:20:56,040 RESULTS BASED ON THE HEMOGLOBIN 6961 04:20:56,040 --> 04:20:59,160 TYPE AND SB AND WHAT'S BEEN 6962 04:20:59,160 --> 04:21:04,440 SHOWN IN SEVERAL PUBLICATIONS. 6963 04:21:04,440 --> 04:21:15,000 SO AND LOOKING AT THE OVER ALL 6964 04:21:18,400 --> 04:21:20,200 RED BLOOD CELL BUT IT'S NOT 6965 04:21:20,200 --> 04:21:21,960 PERFECT HIGHLIGHTING THE 6966 04:21:21,960 --> 04:21:23,200 IMPORTANCE OF LOOKING AT RED 6967 04:21:23,200 --> 04:21:27,240 CELL FUNCTION AND SO MUCH 6968 04:21:27,240 --> 04:21:30,600 ASPECTS IMPACT OUTSIDE OF 6969 04:21:30,600 --> 04:21:31,040 HEMOGLOBIN LEVELS. 6970 04:21:31,040 --> 04:21:32,840 >> THERE'S ANOTHER QUESTION. 6971 04:21:32,840 --> 04:21:34,280 IS THIS GEARED MORE FOR DRUG 6972 04:21:34,280 --> 04:21:38,240 EFFICACY? 6973 04:21:38,240 --> 04:21:42,560 I THINK SUCH BIO PHYSICAL 6974 04:21:42,560 --> 04:21:45,080 ASSESSMENTS CAN LOOK AT THE DRUG 6975 04:21:45,080 --> 04:21:46,920 EFFICACY AND POTENCY AND IN 6976 04:21:46,920 --> 04:21:49,000 VITRO DRUG DEVELOPMENTS AND 6977 04:21:49,000 --> 04:21:51,640 COULD BE ENABLED BY SUCH 6978 04:21:51,640 --> 04:21:52,240 TECHNOLOGY AND MULTIPLE 6979 04:21:52,240 --> 04:21:55,840 APPLICATION AREAS. 6980 04:21:55,840 --> 04:22:00,080 AND THERE'S A QUESTION ABOUT 6981 04:22:00,080 --> 04:22:05,440 WHAT IS THE EFFECT OF RED BLOOD 6982 04:22:05,440 --> 04:22:10,280 CELL FRAGMENTATION AND IT WILL 6983 04:22:10,280 --> 04:22:20,160 BE ANSWERED LIVE. 6984 04:22:20,160 --> 04:22:25,880 >> I THINK IT WAS AN ACCIDENT. 6985 04:22:25,880 --> 04:22:28,840 I WAS TRYING TO TYPE MY 6986 04:22:28,840 --> 04:22:29,240 QUESTION. 6987 04:22:29,240 --> 04:22:32,640 >> I'LL TAKE A LOOK. 6988 04:22:32,640 --> 04:22:33,880 DO WE HAVE COMMENTS ABOUT RED 6989 04:22:33,880 --> 04:22:35,240 BLOOD CELL FRAGMENTATION. 6990 04:22:35,240 --> 04:22:41,040 I DO FOR THE LIRCA. 6991 04:22:41,040 --> 04:22:42,480 IT WOULDN'T RECOGNIZE IT BECAUSE 6992 04:22:42,480 --> 04:22:44,760 IT WON'T HAVE THE RIGHT SIZE OR 6993 04:22:44,760 --> 04:22:47,160 BEHAVIOR WITH THE SYSTEM AND FOR 6994 04:22:47,160 --> 04:22:49,160 YOUR OCCLUSION CHECK WOULD 6995 04:22:49,160 --> 04:22:51,080 PROBABLY PASS THROUGH UNIMPEDED 6996 04:22:51,080 --> 04:22:53,800 BECAUSE OF ITS SMALL SIZE. 6997 04:22:53,800 --> 04:22:55,920 >> NOW, A QUESTION FROM 6998 04:22:55,920 --> 04:23:04,240 DR. GUPTA, IS THE ERYTHROCYTES 6999 04:23:04,240 --> 04:23:06,040 SIGNIFICANT SINCE HEMOGLOBIN A 7000 04:23:06,040 --> 04:23:09,880 PREVENTS SICKLING EARLY IN LIFE? 7001 04:23:09,880 --> 04:23:14,880 I THINK IN THE HYPOXIC 7002 04:23:14,880 --> 04:23:21,120 MEASUREMENTS IF THE F LEVELS ARE 7003 04:23:21,120 --> 04:23:23,120 HIGH, WHICH WE HAVE SHOWN THE 7004 04:23:23,120 --> 04:23:27,480 OCCLUSION INDEX TENDS TO BE 7005 04:23:27,480 --> 04:23:31,200 LOWER AND REDUCE SICKLING AND 7006 04:23:31,200 --> 04:23:32,680 REDUCE STIFFENING OF THE RED 7007 04:23:32,680 --> 04:23:37,640 BLOOD CELLS THAT IS INDUCED BY 7008 04:23:37,640 --> 04:23:39,360 FETAL HEMOGLOBIN BUT IS 7009 04:23:39,360 --> 04:23:40,520 SOMETHING WE SHOULD LOOK INTO. 7010 04:23:40,520 --> 04:23:42,400 IT'S A GOOD COMMENT. 7011 04:23:42,400 --> 04:23:43,880 I EXPECT IF SICKLE HEMOGLOBIN IS 7012 04:23:43,880 --> 04:23:46,280 PRESENT IN THE SAMPLE WE MAY BE 7013 04:23:46,280 --> 04:23:51,240 ABLE TO DETECT A DIFFERENCE IN 7014 04:23:51,240 --> 04:23:58,280 THE OCCLUSION INDEX. 7015 04:23:58,280 --> 04:24:01,920 >> THE ONE FROM DR. KOETS? 7016 04:24:01,920 --> 04:24:04,240 >> HAVE YOU LOOKED AT THIS UNDER 7017 04:24:04,240 --> 04:24:08,680 FLOW IT SEEMS FLOW AT THIS LEVEL 7018 04:24:08,680 --> 04:24:12,440 IS AN IMPEDENCE PROBLEM RATHER 7019 04:24:12,440 --> 04:24:12,800 THAN RESISTANCE. 7020 04:24:12,800 --> 04:24:22,920 THAT'S A GOOD QUESTION. 7021 04:24:22,920 --> 04:24:24,240 IT'S A GOOD QUESTION. 7022 04:24:24,240 --> 04:24:25,600 WE USED IT IN OTHER EXPERIMENTS 7023 04:24:25,600 --> 04:24:27,480 BUT NOT IN THIS ONE SO GOOD 7024 04:24:27,480 --> 04:24:33,320 COMMENT. 7025 04:24:33,320 --> 04:24:38,760 I THINK IT'S WORTH LOOKING AT 7026 04:24:38,760 --> 04:24:49,880 THIS INCLUDING HEMOLIYS-LY HEMO 7027 04:24:56,400 --> 04:25:00,320 HEMOLY 7028 04:25:00,320 --> 04:25:00,560 HEMOLYSIS. 7029 04:25:00,560 --> 04:25:04,560 >> THE OSMOSCAN VERSUS THE 7030 04:25:04,560 --> 04:25:05,600 COMMERCIAL SCAN. 7031 04:25:05,600 --> 04:25:12,800 YOU ALSO SEE THE IMPACT OF PERI 7032 04:25:12,800 --> 04:25:13,040 CYTOLOGY. 7033 04:25:13,040 --> 04:25:19,240 >> I'M A PATIENT AT UNIVERSE 7034 04:25:19,240 --> 04:25:20,160 HOSPITALS AND RETIRED CLINICAL 7035 04:25:20,160 --> 04:25:22,280 LAB EMPLOYEE. 7036 04:25:22,280 --> 04:25:25,760 SO GLAD TO SEE THE RESULTS THEIR 7037 04:25:25,760 --> 04:25:26,920 TECHNOLOGY AND WOULD LIKE TO 7038 04:25:26,920 --> 04:25:31,240 THANK THIS INDIVIDUAL. 7039 04:25:31,240 --> 04:25:31,800 THANK YOU VERY MUCH. 7040 04:25:31,800 --> 04:25:35,800 AND IT WAS POSSIBLE WITH THE 7041 04:25:35,800 --> 04:25:39,240 CONTRIBUTION AND INVOLVEMENT OF 7042 04:25:39,240 --> 04:25:42,200 THE PATIENTS. 7043 04:25:42,200 --> 04:25:42,400 HEMOLIE 7044 04:25:44,320 --> 04:25:45,440 AND DOES IT AFFECT THE 7045 04:25:45,440 --> 04:25:45,760 MEASUREMENT. 7046 04:25:45,760 --> 04:25:52,280 IN ONE SLIDE I SHOW THAT LOW 7047 04:25:52,280 --> 04:26:01,720 FETAL HEMOGLOBIN AND HIGH FETAL 7048 04:26:01,720 --> 04:26:04,920 HEMOGLOBIN AND MCB RESULTS IN 7049 04:26:04,920 --> 04:26:07,240 LOWER INDEX AND HAVE YOU LARGER 7050 04:26:07,240 --> 04:26:14,360 CELLS IN THE CASE OF HIGHER H 7051 04:26:14,360 --> 04:26:16,280 HEMOGLOBIN LEVELS AND RESULTS IN 7052 04:26:16,280 --> 04:26:19,000 A LOWER INDEX WHICH SUGGESTS 7053 04:26:19,000 --> 04:26:23,040 THAT THIS TEST IS MEASURING 7054 04:26:23,040 --> 04:26:25,920 BASED ON DEFORMABILITY NOT SMALL 7055 04:26:25,920 --> 04:26:28,960 DIFFERENCES IN THE VOLUME OR 7056 04:26:28,960 --> 04:26:29,160 SIZE. 7057 04:26:29,160 --> 04:26:32,480 AND THE DEVICE DEPENDS ON 7058 04:26:32,480 --> 04:26:35,000 IMPEDENCE EARLY IN LIFE AND MAY 7059 04:26:35,000 --> 04:26:37,520 BE CRITICAL FOR SCREENING. 7060 04:26:37,520 --> 04:26:39,840 I UNDERSTAND DR. GUPTA'S 7061 04:26:39,840 --> 04:26:40,680 QUESTION BETTER NOW. 7062 04:26:40,680 --> 04:26:45,600 I'M NOT SURE IF WE CAN USE THESE 7063 04:26:45,600 --> 04:26:47,240 RED BLOOD CELL BIO PHYSICAL 7064 04:26:47,240 --> 04:26:50,920 TESTS FOR POINT OF SCREENING FOR 7065 04:26:50,920 --> 04:26:51,600 SICKLE CELL DISEASE. 7066 04:26:51,600 --> 04:26:52,880 SPECIFICALLY BUT IT'S A GOOD 7067 04:26:52,880 --> 04:26:53,480 COMMENT. 7068 04:26:53,480 --> 04:26:58,280 WE HAVE NOT TALKED ABOUT THAT SO 7069 04:26:58,280 --> 04:27:03,040 WE HAVE OTHER METHODS AND 7070 04:27:03,040 --> 04:27:04,800 METHODS FOR POINT-OF-CARE FOR 7071 04:27:04,800 --> 04:27:05,480 SICKLE CELL DISEASE BUT THIS IS 7072 04:27:05,480 --> 04:27:06,600 AN INTERESTING COMMENT, THANK 7073 04:27:06,600 --> 04:27:07,240 YOU. 7074 04:27:07,240 --> 04:27:11,240 >> THE CONCERN IS WITH HIGH 7075 04:27:11,240 --> 04:27:13,520 FETAL HEMOGLOBIN AT FURTHER THE 7076 04:27:13,520 --> 04:27:14,640 RED BLOOD CELL WOULD APPEAR 7077 04:27:14,640 --> 04:27:16,640 ESSENTIALLY NORMAL. 7078 04:27:16,640 --> 04:27:17,680 >> YES. 7079 04:27:17,680 --> 04:27:19,840 AND IT'S BEEN LOOK AT IN MALARIA 7080 04:27:19,840 --> 04:27:27,240 TO LOOK AT THE IMPACT OF RED 7081 04:27:27,240 --> 04:27:28,600 BLOOD CELL DEFORMABILITY. 7082 04:27:28,600 --> 04:27:31,040 IT WOULD BE GREAT TO LOOK AT 7083 04:27:31,040 --> 04:27:31,360 THIS. 7084 04:27:31,360 --> 04:27:40,720 I THINK IT'S A GOOD COMMENT. 7085 04:27:40,720 --> 04:27:43,240 >> LET'S TAKE ONE MORE QUESTION. 7086 04:27:43,240 --> 04:27:48,200 I'M GLAD IT'S GETTING SO MUCH 7087 04:27:48,200 --> 04:27:48,480 INTEREST. 7088 04:27:48,480 --> 04:27:56,200 >> DR. COATES SAID IT WOULD BE 7089 04:27:56,200 --> 04:27:58,640 INTERESTING TO LOOK AT THE SETS 7090 04:27:58,640 --> 04:28:00,600 WITH MISSING ALPHA AND WONDERING 7091 04:28:00,600 --> 04:28:05,200 IF YOU CAN DETECT A DIFFERENCE 7092 04:28:05,200 --> 04:28:06,120 IN DEFORMABILITY. 7093 04:28:06,120 --> 04:28:08,880 WE HAVE TALKED ABOUT THIS QUITE 7094 04:28:08,880 --> 04:28:16,040 A BIT LOOKING AT THE EFFECT OF 7095 04:28:16,040 --> 04:28:17,960 ALPHA TAU. 7096 04:28:17,960 --> 04:28:19,720 WE'RE INTERESTED AND DR. COATES 7097 04:28:19,720 --> 04:28:21,080 IF YOU'RE INTERESTED IN LOOKING 7098 04:28:21,080 --> 04:28:22,640 AT THIS TOGETHER WE'D BE HAPPY 7099 04:28:22,640 --> 04:28:24,800 TO DO THAT. 7100 04:28:24,800 --> 04:28:26,840 THAT'S A GOOD COMMENT. 7101 04:28:26,840 --> 04:28:30,280 >> IT HIGHLIGHTS THE CHALLENGES. 7102 04:28:30,280 --> 04:28:32,680 THE LIRKA CAN SOMETIMES DETECT 7103 04:28:32,680 --> 04:28:34,280 WITH OXYGEN GRADIENT A 7104 04:28:34,280 --> 04:28:36,400 DIFFERENCE BETWEEN A NORMAL AND 7105 04:28:36,400 --> 04:28:39,760 TRAIT BUT NOT RELIABLY AND NOT 7106 04:28:39,760 --> 04:28:41,520 ON EVERY DEVICE. 7107 04:28:41,520 --> 04:28:43,240 SOMETHING I'VE ASKED UMUT TO 7108 04:28:43,240 --> 04:28:44,720 HELP WITH IS TO DEVELOP THE 7109 04:28:44,720 --> 04:28:47,360 DEVICE THAT WOULD RELIABLY BE 7110 04:28:47,360 --> 04:28:56,960 ABLE TO INTERROGATE TRAIT NOT 7111 04:28:56,960 --> 04:29:00,360 JUST WITH KNOWN MODIFIERS BUT 7112 04:29:00,360 --> 04:29:04,280 WITH GREATER VARIABILITY CAUSED 7113 04:29:04,280 --> 04:29:05,480 BY MEMBRANOPATHY DIFFERENCES AND 7114 04:29:05,480 --> 04:29:10,280 THINGS THAT MAY EXPLAINS WHAT 7115 04:29:10,280 --> 04:29:13,640 DRIVES TRAIT DIFFERENCES ON AN 7116 04:29:13,640 --> 04:29:14,240 EPIDEMIOLOGY LEVEL. 7117 04:29:14,240 --> 04:29:18,080 >> VERY GOOD QUESTION AND 7118 04:29:18,080 --> 04:29:18,680 COMMENT. 7119 04:29:18,680 --> 04:29:20,400 >> OUR NEXT SPEAKER, THEN -- 7120 04:29:20,400 --> 04:29:21,920 >> WOULD YOU LIKE ME TO 7121 04:29:21,920 --> 04:29:22,240 INTRODUCE. 7122 04:29:22,240 --> 04:29:24,400 >> YES, LET'S ALL GET IN THAT 7123 04:29:24,400 --> 04:29:24,600 HABIT. 7124 04:29:24,600 --> 04:29:34,240 >> OUR NEXT SBAEPEAKER IS TAMI N 7125 04:29:34,240 --> 04:29:35,000 FROM CHILDREN'S HOSPITAL BAYLOR 7126 04:29:35,000 --> 04:29:43,120 COLLEGE OF MEDICINE. 7127 04:29:43,120 --> 04:29:45,840 >> CAN YOU SEE THAT. 7128 04:29:45,840 --> 04:29:53,040 I'M TAMI JOHN FROM TEXAS 7129 04:29:53,040 --> 04:29:57,240 CHILDREN'S HOSPITAL, BAYLOR 7130 04:29:57,240 --> 04:29:59,160 MEDICINE AND THANK YOU FOR THE 7131 04:29:59,160 --> 04:30:02,760 RBC FUNCTION AFTER THERAPIES 7132 04:30:02,760 --> 04:30:04,240 WITH CURATIVE INTENT. 7133 04:30:04,240 --> 04:30:07,080 I'M A CLINICIAN SO THIS IS A 7134 04:30:07,080 --> 04:30:10,400 SHIFT IN CONVERSATION LOOKING AT 7135 04:30:10,400 --> 04:30:14,160 CLINICAL ASPECT AND SPECIFICALLY 7136 04:30:14,160 --> 04:30:18,040 THE WORK. 7137 04:30:18,040 --> 04:30:20,680 I HAVE NO PERSONAL FINANCIAL 7138 04:30:20,680 --> 04:30:23,640 DISCLOSURES BUT HAVE INTEREST IN 7139 04:30:23,640 --> 04:30:33,400 THERAPIES RELATED TO DEVELOPED. 7140 04:30:33,400 --> 04:30:34,480 -- SICKLE CELL DISEASE AND I 7141 04:30:34,480 --> 04:30:37,680 HAVE CURE IN QUOTATIONS. 7142 04:30:37,680 --> 04:30:39,280 IN THE CONTEXT OF CORRECTIVE 7143 04:30:39,280 --> 04:30:41,080 CELLULAR THERAPIES. 7144 04:30:41,080 --> 04:30:44,800 I'LL DISCUSS THE CONCEPT OF RBC 7145 04:30:44,800 --> 04:30:47,200 FUNCTION AND FUNCTIONAL ANALYSIS 7146 04:30:47,200 --> 04:30:50,640 USING EKTACYTOMETRY AND SHIFT 7147 04:30:50,640 --> 04:30:53,240 GEARS TO DISCUSS DONOR CELL 7148 04:30:53,240 --> 04:30:55,280 ENGRAFTMENT AFTER TRANSPLANT FOR 7149 04:30:55,280 --> 04:30:56,640 SICKLE CELL DISEASE AND CONCLUDE 7150 04:30:56,640 --> 04:30:57,680 WITH FINAL THOUGHTS AND 7151 04:30:57,680 --> 04:30:58,480 RELEVANCE AND FUTURE 7152 04:30:58,480 --> 04:31:00,560 CONSIDERATIONS. 7153 04:31:00,560 --> 04:31:04,280 SO AS WAS PRESENTED YESTERDAY, 7154 04:31:04,280 --> 04:31:06,560 CORRECTIVE THERAPIES WITH 7155 04:31:06,560 --> 04:31:09,560 CURATIVE INTENT FOR SICKLE CELL 7156 04:31:09,560 --> 04:31:15,120 DISEASE ARE CURRENTLY DIVIDED 7157 04:31:15,120 --> 04:31:23,480 INTO THE ALLO GENIC STEM 7158 04:31:23,480 --> 04:31:24,840 TRANSPLANT AND MANY PEOPLE 7159 04:31:24,840 --> 04:31:27,240 EXCITED ABOUT THIS RESEARCH AND 7160 04:31:27,240 --> 04:31:32,800 THE DEVELOPMENT OF REDUCED 7161 04:31:32,800 --> 04:31:33,080 TOXICITY. 7162 04:31:33,080 --> 04:31:37,200 THE SECOND IS AUTOLOGOUS 7163 04:31:37,200 --> 04:31:40,280 GENE-MODIFIED THERAPIES WITH AN 7164 04:31:40,280 --> 04:31:41,520 INSERTION AND SILENCE AND 7165 04:31:41,520 --> 04:31:43,560 CORRECTION AMONG OTHERS. 7166 04:31:43,560 --> 04:31:46,800 SO IN GENERAL, THERAPIES 7167 04:31:46,800 --> 04:31:47,760 TARGETED TO CURE SICKLE CELL 7168 04:31:47,760 --> 04:31:49,400 DISEASE AT LEAST FROM MY 7169 04:31:49,400 --> 04:31:52,280 PERSPECTIVE SHOULD BE CORRECTIVE 7170 04:31:52,280 --> 04:31:53,280 SUCH THAT RESOLUTION OF THE 7171 04:31:53,280 --> 04:31:54,480 CLINICAL PHENOTYPE IS SEEN FIRST 7172 04:31:54,480 --> 04:31:56,240 AND FOREMOST. 7173 04:31:56,240 --> 04:31:58,240 THIS IS ACHIEVED BIO LOGICALLY 7174 04:31:58,240 --> 04:32:00,200 THROUGH EXPRESSION OF A 7175 04:32:00,200 --> 04:32:03,240 NON-SICKLING HEMOGLOBIN THAT 7176 04:32:03,240 --> 04:32:13,760 MIMICS OR ELIMINATES ERYTHROCYTE 7177 04:32:18,960 --> 04:32:20,120 SICKLING AND THE REMAINDER OF 7178 04:32:20,120 --> 04:32:27,200 THIS TALK IS IN REGARDS TO RED 7179 04:32:27,200 --> 04:32:29,520 BLOOD CELL DEFORMITY AS ASSESSED 7180 04:32:29,520 --> 04:32:31,960 BY ANALYZER WORK AS DR. SHEEHAN 7181 04:32:31,960 --> 04:32:32,720 HAD PRESENTED. 7182 04:32:32,720 --> 04:32:35,240 THE ADDITIONAL APPLICATION OF AN 7183 04:32:35,240 --> 04:32:38,200 OXYGEN GRADIENT HAS ALLOWED FOR 7184 04:32:38,200 --> 04:32:40,360 ASSESSMENT OF DEFORMABILITY IN 7185 04:32:40,360 --> 04:32:45,640 SHEER STRESS DURING OXYGEN 7186 04:32:45,640 --> 04:32:48,280 DEPLETION. 7187 04:32:48,280 --> 04:32:55,280 AS DR. SHEEHAN HAS SHOWN, THIS 7188 04:32:55,280 --> 04:32:56,200 GRAPHICAL REPRESENTATION ON THE 7189 04:32:56,200 --> 04:32:57,880 RIGHT IS WHAT'S PRODUCED AFTER 7190 04:32:57,880 --> 04:33:08,280 ANALYSIS OF THE WORK UP. 7191 04:33:11,200 --> 04:33:12,600 DATA POINTS TO INCLUDE THE POINT 7192 04:33:12,600 --> 04:33:15,400 OF SICKLING AT THE OXYGEN 7193 04:33:15,400 --> 04:33:18,160 CONCENTRATION WHERE THE 7194 04:33:18,160 --> 04:33:18,800 DEFORMABILITY DECLINES AND THE 7195 04:33:18,800 --> 04:33:21,640 CELLS BEGIN TO SICKLE. 7196 04:33:21,640 --> 04:33:23,400 THE INDEX IS A NUMERICAL VALUE 7197 04:33:23,400 --> 04:33:28,200 OF DEFORMITY WITH THE I.E. MAX 7198 04:33:28,200 --> 04:33:33,840 DESCRIBING DEFORMABILITY UNDER 7199 04:33:33,840 --> 04:33:34,640 OXYGEN CONDITIONS AND THE THEN 7200 04:33:34,640 --> 04:33:37,800 THE DELTA BETWEEN THE TWO. 7201 04:33:37,800 --> 04:33:41,840 THE PICTORIAL ON THE RIGHT SHOWS 7202 04:33:41,840 --> 04:33:44,560 RED CELL DEFORMITY PER CELL TYPE 7203 04:33:44,560 --> 04:33:46,760 AND I'LL NOTE THE TOP BLUE RYAN 7204 04:33:46,760 --> 04:33:49,760 REPRESENTS HEMOGLOBIN AA RED 7205 04:33:49,760 --> 04:33:54,520 CELLS UNAFFECTED BY HYPOXIA. 7206 04:33:54,520 --> 04:34:01,040 THE PURPLE CURVE IS REFLECTIVE 7207 04:34:01,040 --> 04:34:01,720 OF THE RED BLOOD CELLS OR SICKLE 7208 04:34:01,720 --> 04:34:05,280 CELL TRAIT AND LOOKING AT 7209 04:34:05,280 --> 04:34:06,720 CONCENTRATION WITHOUT THE 7210 04:34:06,720 --> 04:34:09,560 ELONGATION INDEX OR SIGNIFICANT 7211 04:34:09,560 --> 04:34:09,840 SIGNALLING. 7212 04:34:09,840 --> 04:34:14,720 THE RED LINE AT THE BOTTOM 7213 04:34:14,720 --> 04:34:16,640 REPRESENTS THE RED BLOOD CELLS 7214 04:34:16,640 --> 04:34:21,320 WHERE DEFORMABILITY DECLINES 7215 04:34:21,320 --> 04:34:22,160 PRECIPITOUSLY WITH HYPOXIA 7216 04:34:22,160 --> 04:34:28,320 CREATING THE INDEX CURVE. 7217 04:34:28,320 --> 04:34:29,240 RED BLOOD CELL DEFORMITY WITH A 7218 04:34:29,240 --> 04:34:32,200 VARIETY OF EXPOSURES HAS BEEN 7219 04:34:32,200 --> 04:34:34,560 DESCRIBED AND THE LOWEST SOLID 7220 04:34:34,560 --> 04:34:36,840 BLACK LINE YOU SEE HERE 7221 04:34:36,840 --> 04:34:39,160 REPRESENTS UNTREATED RED BLOOD 7222 04:34:39,160 --> 04:34:44,240 CELLS IN HEMOGLOBIN SS DISEASE. 7223 04:34:44,240 --> 04:34:49,280 THEED TO LINE REPRESENTS THE 7224 04:34:49,280 --> 04:34:49,920 TRANSFUSED SICKLE CELL DISEASE 7225 04:34:49,920 --> 04:34:52,320 AND THE MIDDLE LINES REPRESENT 7226 04:34:52,320 --> 04:34:53,080 SICKLE CELL DISEASE WITH VARIOUS 7227 04:34:53,080 --> 04:35:00,320 FACTORS SUCH AS THE HYDROXYUREA 7228 04:35:00,320 --> 04:35:01,440 EXPOSURE WITH A YOUNG PATIENT 7229 04:35:01,440 --> 04:35:03,440 UNDER 5 YEARS OR SS DISEASE AND 7230 04:35:03,440 --> 04:35:07,040 THE HIGH POINT OF SICKLING BY 7231 04:35:07,040 --> 04:35:10,400 THE RIGHT LINE WHEN LOOKING AT 7232 04:35:10,400 --> 04:35:14,680 UNTREATED HEMOGLOBIN SS COMPARED 7233 04:35:14,680 --> 04:35:16,040 TO ALL THESE OTHER SICKLE CELL 7234 04:35:16,040 --> 04:35:18,760 DISEASE WITH OTHER EXPOSURES. 7235 04:35:18,760 --> 04:35:20,760 FURTHER, NOTE THE DIFFERENCES IN 7236 04:35:20,760 --> 04:35:22,560 THE ELONGATION INDEXES WHEN 7237 04:35:22,560 --> 04:35:28,840 COMPARED TO UNTREATED HEMOGLOBIN 7238 04:35:28,840 --> 04:35:29,000 SS. 7239 04:35:29,000 --> 04:35:31,720 GENERALLY DEOXYGENATION IS 7240 04:35:31,720 --> 04:35:34,280 REPRESENTED BY THE CHANGES IN 7241 04:35:34,280 --> 04:35:35,640 THE ELONGATION INDEX 7242 04:35:35,640 --> 04:35:36,960 PARTICULARLY IN THE YOUNGER 7243 04:35:36,960 --> 04:35:42,160 PATIENTS AN THOSE WHO HAVE BEEN 7244 04:35:42,160 --> 04:35:43,200 TRANSFUSED COMPARED TO 7245 04:35:43,200 --> 04:35:51,840 HEMOGLOBIN SS WITHOUT THERAPIES. 7246 04:35:51,840 --> 04:35:55,600 THIS DEPICT THE DEFORMITY 7247 04:35:55,600 --> 04:35:57,560 WITHOUT GRADIENT. 7248 04:35:57,560 --> 04:35:59,280 IN A PATIENT WITH SICKLE CELL 7249 04:35:59,280 --> 04:36:02,760 DISEASE RECENTLY HAVING RECEIVED 7250 04:36:02,760 --> 04:36:05,040 RED CELL EXCHANGE THEY WERE 7251 04:36:05,040 --> 04:36:07,720 ANALYZED AND NOTE THE POINT OF 7252 04:36:07,720 --> 04:36:10,960 SICKLING UP HERE IN THE WHOLE 7253 04:36:10,960 --> 04:36:14,400 BLOOD IS RELATIVELY LOW COMPARED 7254 04:36:14,400 --> 04:36:16,200 TO THE NON-TREATED SICKLE CELL 7255 04:36:16,200 --> 04:36:18,600 I'LL SHOW IN FUTURE SLIDES AT 7256 04:36:18,600 --> 04:36:20,960 ABOUT 14.5 MILLIGRAMS MERCURY. 7257 04:36:20,960 --> 04:36:23,160 AS EXPECTED GIVEN THE THERAPY 7258 04:36:23,160 --> 04:36:24,880 AND AFTER INTENSITY SORTING, THE 7259 04:36:24,880 --> 04:36:28,080 POPULATION OF CELLS IS IDENTIFY 7260 04:36:28,080 --> 04:36:29,960 WITH A HIGH POINT OF SICKLING 7261 04:36:29,960 --> 04:36:38,400 AND FORMABILITY REFLECTIVE AND 7262 04:36:38,400 --> 04:36:41,160 SHOWN ON THE CURVE. 7263 04:36:41,160 --> 04:36:43,240 YOU CAN SEPARATE OUT CELLS BY 7264 04:36:43,240 --> 04:36:44,040 DENSITY AND LOOK AT THEIR 7265 04:36:44,040 --> 04:36:48,000 FUNCTION INDIVIDUALLY. 7266 04:36:48,000 --> 04:36:49,800 TO SHIFT GEARS SLIGHTLY BACK TO 7267 04:36:49,800 --> 04:36:53,320 THE CURATIVE THERAPIES AND THE 7268 04:36:53,320 --> 04:36:55,080 CLINICAL REALM AS WE HEARD 7269 04:36:55,080 --> 04:36:58,320 YESTERDAY WE HEARD THE SUCCESSES 7270 04:36:58,320 --> 04:37:03,880 OF THE THERAPY WE CONSIDER 7271 04:37:03,880 --> 04:37:07,240 CURATIVE AND THERE WAS A REPORT 7272 04:37:07,240 --> 04:37:11,920 THE LARGEST META-ANALYSIS OF 7273 04:37:11,920 --> 04:37:14,320 SICKLE CELL DISEASE AFTER BONE 7274 04:37:14,320 --> 04:37:17,560 MARROW TRANSPLANT FROM A DONOR 7275 04:37:17,560 --> 04:37:28,040 FROM MYBLATED BLOOD AND TO 7276 04:37:33,280 --> 04:37:39,120 EXPAND DONOR POSSIBILITIES BEING 7277 04:37:39,120 --> 04:37:42,360 EXPLORED WITH HIGH POPULARITY. 7278 04:37:42,360 --> 04:37:44,480 THOUGH WITH THE EXPLORATION 7279 04:37:44,480 --> 04:37:46,960 WE'RE RECOGNIZING THERE'S AN 7280 04:37:46,960 --> 04:37:49,560 INCREASED RISK FOR INCREASED 7281 04:37:49,560 --> 04:37:54,920 ENGRAFTMENT UP TO 40% TO 50% OF 7282 04:37:54,920 --> 04:38:01,640 PATIENTS INCLUDING MYOBLATIVE 7283 04:38:01,640 --> 04:38:04,280 CONDITIONING UP TO 30%. 7284 04:38:04,280 --> 04:38:07,240 I'VE GIVEN THE RISK OF HIGH 7285 04:38:07,240 --> 04:38:10,320 RATES WITH THE CONDITIONING 7286 04:38:10,320 --> 04:38:13,080 REGIMENTS UNDERSTANDING THE 7287 04:38:13,080 --> 04:38:16,320 IMPACT OF MIXED DONOR CHIMERISM 7288 04:38:16,320 --> 04:38:19,400 IS AFFECTED ABOUT THE DEGREE OF 7289 04:38:19,400 --> 04:38:22,320 CORRECTION AND NIH PUBLISHED A 7290 04:38:22,320 --> 04:38:27,200 MODEL HERE THAT CAN PREDICT 7291 04:38:27,200 --> 04:38:29,880 HEMOGLOBIN PERCENT WITH MYELOID 7292 04:38:29,880 --> 04:38:34,320 ENGRAFTMENT AND AS THE DONOR 7293 04:38:34,320 --> 04:38:38,480 CHIMERISM DECREASES HEMOGLOBIN 7294 04:38:38,480 --> 04:38:40,840 AFFECTS ABOUT 50% IN RECIPIENT 7295 04:38:40,840 --> 04:38:45,280 FROM AN A.S. DONOR WHICH IS 7296 04:38:45,280 --> 04:38:45,840 CLEARLY CONCERNING SEEING 7297 04:38:45,840 --> 04:38:49,360 INCREASES BEYOND WHAT THE DONOR 7298 04:38:49,360 --> 04:38:51,000 SHOULD REPRESENT. 7299 04:38:51,000 --> 04:38:54,840 SO THEY HYPOTHESIZED OR 7300 04:38:54,840 --> 04:38:56,960 THEORIZED THE DONOR CHIMERISM 7301 04:38:56,960 --> 04:39:03,200 CAN BE VERY LOW BECAUSE NORMAL 7302 04:39:03,200 --> 04:39:08,360 PRECURSORS OUTLIVE THE 7303 04:39:08,360 --> 04:39:10,080 ERYTHROPOIESIS AND CAN STILL 7304 04:39:10,080 --> 04:39:10,640 MAINTAIN CORRECTION OF THE 7305 04:39:10,640 --> 04:39:17,960 PHENOTYPE. 7306 04:39:17,960 --> 04:39:21,320 AND WE HAVE MONITORED PATIENTS 7307 04:39:21,320 --> 04:39:24,480 WHO SERVICED THE TRANSPLANT AND 7308 04:39:24,480 --> 04:39:28,160 WE SEE A RATE OF MIXED CHIMERISM 7309 04:39:28,160 --> 04:39:29,560 SIMILAR TO THE REPORT AROUND 40% 7310 04:39:29,560 --> 04:39:30,560 TO 50%. 7311 04:39:30,560 --> 04:39:32,560 IN TWO CASES, HOWEVER, WE SAW 7312 04:39:32,560 --> 04:39:37,040 DONOR CHIMERISM THAT WAS QUITE 7313 04:39:37,040 --> 04:39:37,200 LOW. 7314 04:39:37,200 --> 04:39:42,080 THE MAJORITY HAD THEM IN THE 90% 7315 04:39:42,080 --> 04:39:45,360 DONOR MYELOID COMPARTMENT AS 7316 04:39:45,360 --> 04:39:48,280 COMPARED TO JUST THE TWO THAT 7317 04:39:48,280 --> 04:39:50,400 HAVE SIGNIFICANT LOWER CHIMERISM 7318 04:39:50,400 --> 04:39:51,240 BELOW 50%. 7319 04:39:51,240 --> 04:39:53,640 IN BOTH CASES I HAVE THEM 7320 04:39:53,640 --> 04:39:57,320 DESPITE ON THE RIGHT ONE HAD 7321 04:39:57,320 --> 04:40:01,320 DONOR MYELOID CHIMERISM AND BOTH 7322 04:40:01,320 --> 04:40:03,560 WERE NEARING 10 YEARS OUT OF 7323 04:40:03,560 --> 04:40:06,840 TRANSPLANT AND NOTABLY THE 7324 04:40:06,840 --> 04:40:10,000 PATIENT WITH 15% HAD HEMOGLOBIN 7325 04:40:10,000 --> 04:40:11,200 S OF 43%. 7326 04:40:11,200 --> 04:40:15,960 AND A DONOR WHO HAD GENOTYPE AA 7327 04:40:15,960 --> 04:40:17,640 AND SHOULD HAVE EVIDENCE OF 7328 04:40:17,640 --> 04:40:20,840 HEMOGLOBIN SS HADN'T HAD 7329 04:40:20,840 --> 04:40:24,280 SIGNIFICANT OR ACUTE SICKLE CELL 7330 04:40:24,280 --> 04:40:26,640 MANIFESTATIONS THOUGH ON 7331 04:40:26,640 --> 04:40:31,240 LABORATORY FINDINGS HAS EVIDENCE 7332 04:40:31,240 --> 04:40:36,280 OF HEMOLYSIS AND DIDN'T REQUIRE 7333 04:40:36,280 --> 04:40:39,200 SIGNIFICANT INTERVENTIONS. 7334 04:40:39,200 --> 04:40:46,160 THE SECOND PATIENT HAD A 7335 04:40:46,160 --> 04:40:48,360 HEMOGLOBIN SS OF 4% AND DIDN'T 7336 04:40:48,360 --> 04:40:51,240 HAVE ACUTE COMPLICATIONS OF 7337 04:40:51,240 --> 04:40:58,080 SICKLE CELL DISEASE. 7338 04:40:58,080 --> 04:41:01,720 AND WE LOOKED IN CONJUNCTION OF 7339 04:41:01,720 --> 04:41:04,320 DR. SHEEHAN WITH TRANSPLANTS 7340 04:41:04,320 --> 04:41:05,400 WITH CHIMERISM. 7341 04:41:05,400 --> 04:41:11,200 IN THE LEFT TWO IN THE BOTTOM 7342 04:41:11,200 --> 04:41:16,800 RIGHT GRAPH AND LOOK AT 7343 04:41:16,800 --> 04:41:21,520 INTERMEDIATE CHIMERISM OF 50% TO 7344 04:41:21,520 --> 04:41:22,320 90% HOWEVER, RED CELL FUNCTION 7345 04:41:22,320 --> 04:41:25,840 THAT REFLECTS THAT OF OUR AA AND 7346 04:41:25,840 --> 04:41:29,080 AS DONOR AND YOU SEE THE FLOOD 7347 04:41:29,080 --> 04:41:32,120 LINES OR FLATLY CURVE LINES 7348 04:41:32,120 --> 04:41:37,720 CONSISTENT WITH THE RED BLOOD 7349 04:41:37,720 --> 04:41:37,920 CELLS. 7350 04:41:37,920 --> 04:41:48,440 ON THE TOP RIGHT WE HAVE LOOKED 7351 04:42:22,960 --> 04:42:24,760 AT CORRECTION WITH RED BLOOD 7352 04:42:24,760 --> 04:42:28,920 CELL DEFORMITY CONSISTENT WITH 7353 04:42:28,920 --> 04:42:35,240 THE DONOR AND WE CAN LOOK AT 7354 04:42:35,240 --> 04:42:36,880 SUSTAINED PROTECTION FROM 7355 04:42:36,880 --> 04:42:39,240 CLINICAL EVENTS BUT AT 7356 04:42:39,240 --> 04:42:39,880 POPULATION-LEVEL ASSESSMENT WE 7357 04:42:39,880 --> 04:42:42,120 SEE THAT A BIOLOGICAL CURE HAS 7358 04:42:42,120 --> 04:42:44,120 NOT BEEN ACHIEVED WITH RED BLOOD 7359 04:42:44,120 --> 04:42:50,120 CELL S THAT AFFECT HYDROXYUREA. 7360 04:42:50,120 --> 04:42:51,800 ALSO AS PRESENTED YESTERDAY A 7361 04:42:51,800 --> 04:43:01,680 FEW TIMES AND PUBLISHED, WE HAVE 7362 04:43:01,680 --> 04:43:04,040 SEEN CLEARER CLINICAL RELEVANCE 7363 04:43:04,040 --> 04:43:10,080 WITH COMPLETION OF THE ACUTE 7364 04:43:10,080 --> 04:43:12,480 OCCLUSIVE CRISIS AND THOSE 7365 04:43:12,480 --> 04:43:17,200 PROFOUND IN THE PRE AND POST 7366 04:43:17,200 --> 04:43:19,520 EVENTS AND BUY LODGE EXPRESSION 7367 04:43:19,520 --> 04:43:24,120 IN THE GROUP C COHORT IS 7368 04:43:24,120 --> 04:43:27,680 REPORTED AT 40% TO 50% WITH 7369 04:43:27,680 --> 04:43:31,720 EXPRESSION OF THAT IN 80% TO 90% 7370 04:43:31,720 --> 04:43:34,200 OF RED BLOOD CELLS. 7371 04:43:34,200 --> 04:43:35,080 THERE'S A POPULATION OF CELLS 7372 04:43:35,080 --> 04:43:38,160 THAT ARE BETA S ONLY AND 10% TO 7373 04:43:38,160 --> 04:43:40,040 12% OF THE CELLS. 7374 04:43:40,040 --> 04:43:46,480 THE SHEEHAN LAB PERFORM ED 7375 04:43:46,480 --> 04:43:47,760 CYTOMETRIC EVALUATION AND THE 7376 04:43:47,760 --> 04:43:49,520 CURVE IS SHOWN HERE. 7377 04:43:49,520 --> 04:43:51,240 IN THIS PARTICULAR INDIVIDUAL 7378 04:43:51,240 --> 04:43:54,120 THE HEMOGLOBIN WAS NORMAL AT 7379 04:43:54,120 --> 04:43:54,600 12.2. 7380 04:43:54,600 --> 04:43:58,040 THE PATIENT HAS NO SIGNIFICANT 7381 04:43:58,040 --> 04:44:05,680 SIGNS OF HEMOLYSIS AND THE BLOOD 7382 04:44:05,680 --> 04:44:10,200 SICKLES AND THEY LOOK AT 17.5 7383 04:44:10,200 --> 04:44:12,840 AND THE CELLS ARE POORLY 7384 04:44:12,840 --> 04:44:13,360 DEFORMABLE ON POPULATION 7385 04:44:13,360 --> 04:44:22,400 ANALYSIS. 7386 04:44:22,400 --> 04:44:24,120 AND SHOWS FUNCTION IN WHAT WE 7387 04:44:24,120 --> 04:44:26,640 CALL DISEASE RANGE RESEMBLING 7388 04:44:26,640 --> 04:44:31,200 THAT OF A PERSON TRANSFUSED WITH 7389 04:44:31,200 --> 04:44:31,640 SICKLE CELL DISEASE. 7390 04:44:31,640 --> 04:44:35,840 AND CORRECTION OF THE SICKLING 7391 04:44:35,840 --> 04:44:37,960 PHENOTYPE INCLUDING ANEMIA 7392 04:44:37,960 --> 04:44:40,000 THOUGH A POPULATION OF SICKLE 7393 04:44:40,000 --> 04:44:42,080 CELLS PERSIST THOUGH MAY BE 7394 04:44:42,080 --> 04:44:43,840 HEAVILY DILUTED. 7395 04:44:43,840 --> 04:44:46,640 LESSONS LEARNED FROM THIS CASE 7396 04:44:46,640 --> 04:44:48,520 INCLUDING THE FOLLOWING THERAPY 7397 04:44:48,520 --> 04:44:51,240 RESULTS IN BENEFIT FROM 7398 04:44:51,240 --> 04:44:52,760 SUSTAINED COLLISION OF SICKLE 7399 04:44:52,760 --> 04:44:55,520 CELL DISEASE HOWEVER A 7400 04:44:55,520 --> 04:44:57,800 POPULATION OF SICKLE CELLS 7401 04:44:57,800 --> 04:44:59,000 CO-EXIST ON POPULATION LEVEL 7402 04:44:59,000 --> 04:44:59,640 ANALYSIS EXHIBIT DISEASE LEVEL 7403 04:44:59,640 --> 04:45:02,360 FUNCTION. 7404 04:45:02,360 --> 04:45:10,040 AND I SUSPECT IF WE LOOK AT THE 7405 04:45:10,040 --> 04:45:12,240 GRADIENT ANALYSIS THEY LOOK LIKE 7406 04:45:12,240 --> 04:45:14,400 SICKLE CELL DISEASE THOUGH YOU 7407 04:45:14,400 --> 04:45:19,040 MAY FIND INTERESTING -- YOU SEE 7408 04:45:19,040 --> 04:45:19,960 INTERESTING FINDINGS WITH 7409 04:45:19,960 --> 04:45:22,280 PARTIAL CORRECTIONS AND 7410 04:45:22,280 --> 04:45:23,880 CORRELATION OF POPULATION 7411 04:45:23,880 --> 04:45:27,240 ANALYSIS AND THEN REALLY LOOKING 7412 04:45:27,240 --> 04:45:27,960 AT DENSITY GRADIENT ANALYSIS 7413 04:45:27,960 --> 04:45:30,120 AFTER THERAPIES IS NEEDED TO 7414 04:45:30,120 --> 04:45:32,720 HELP US ELUCIDATE SOME OF THE 7415 04:45:32,720 --> 04:45:35,360 RELEVANCE OF THESE FINDINGS. 7416 04:45:35,360 --> 04:45:37,960 AND FINALLY AMONG PATIENTS WHO 7417 04:45:37,960 --> 04:45:40,320 HAVE RECEIVED OTHER GENE 7418 04:45:40,320 --> 04:45:41,480 MODIFICATION THERAPIES AND GENE 7419 04:45:41,480 --> 04:45:43,200 EDITING APPROACHES I THINK IT 7420 04:45:43,200 --> 04:45:45,320 WILL BE INTERESTING TO ASSESS 7421 04:45:45,320 --> 04:45:47,560 WHAT A POPULATION LEVEL AND 7422 04:45:47,560 --> 04:45:51,240 DENSITY GRADIENT SORTING WHAT 7423 04:45:51,240 --> 04:45:53,640 THE RED CELL FUNCTION LOOKS LIKE 7424 04:45:53,640 --> 04:45:55,800 IN COMPARISON. 7425 04:45:55,800 --> 04:45:58,480 TO CONCLUDE, RED BLOOD CELL 7426 04:45:58,480 --> 04:46:01,880 ANALYSIS WITH OXYGEN GRADIENT 7427 04:46:01,880 --> 04:46:02,800 DESCRIBES DISEASE OF DISEASE 7428 04:46:02,800 --> 04:46:04,320 CORRECTION WITH POTENTIAL 7429 04:46:04,320 --> 04:46:05,760 APPLICABILITY IN PARTIALLY 7430 04:46:05,760 --> 04:46:08,000 CORRECTIVE THERAPIES. 7431 04:46:08,000 --> 04:46:09,040 CERTAINLY LARGE SCALE ANALYSES 7432 04:46:09,040 --> 04:46:11,160 ARE NEEDED TO UNDERSTAND THE 7433 04:46:11,160 --> 04:46:16,360 RELEVANCE OF POPULATION-LEVEL 7434 04:46:16,360 --> 04:46:17,160 DISEASE RANGE RED BLOOD CELL 7435 04:46:17,160 --> 04:46:21,720 FUNCTION PARTICULARLY BECAUSE 7436 04:46:21,720 --> 04:46:22,760 CLINICAL BENEFIT FROM THESE 7437 04:46:22,760 --> 04:46:24,880 THERAPIES SEEMS TO EXCEED THAT 7438 04:46:24,880 --> 04:46:26,080 EXPECTED BASED ON THE FUNCTIONAL 7439 04:46:26,080 --> 04:46:28,120 ANALYSIS WE'VE SHOWN TODAY. 7440 04:46:28,120 --> 04:46:30,520 QUESTIONS REMAIN REGARDING THE 7441 04:46:30,520 --> 04:46:34,320 SIGNIFICANCE OF ONGOING SICKLING 7442 04:46:34,320 --> 04:46:39,720 IN A SMALL POPULATION OF CELLS. 7443 04:46:39,720 --> 04:46:44,000 WHAT'S THAT MEAN IN AS FAR AS 7444 04:46:44,000 --> 04:46:46,160 ORGAN TOXICITY AND STRESS AND 7445 04:46:46,160 --> 04:46:47,800 LOOKING AT LIMITATIONS IN 7446 04:46:47,800 --> 04:46:51,200 POPULATION ANALYSIS AND MAY HELP 7447 04:46:51,200 --> 04:46:54,200 IDENTIFY CLINICAL THRESHOLDS TO 7448 04:46:54,200 --> 04:46:55,320 LOOK AT ACUTE AND CHRONIC SICKLE 7449 04:46:55,320 --> 04:46:56,240 CELL DISEASE. 7450 04:46:56,240 --> 04:46:57,800 MORE INFORMATION IS NEEDED 7451 04:46:57,800 --> 04:47:01,360 REGARDING CORRELATION AND 7452 04:47:01,360 --> 04:47:02,480 PREDICTABILITY OF CLINICAL 7453 04:47:02,480 --> 04:47:03,440 OUTCOMES USING THE BIOMARKERS 7454 04:47:03,440 --> 04:47:05,280 AND MAY BE A TOOL IN CONJUNCTION 7455 04:47:05,280 --> 04:47:07,240 WITH THE OTHER BIOMARKERS 7456 04:47:07,240 --> 04:47:10,000 PRESENTED TODAY THAT CAN HELP 7457 04:47:10,000 --> 04:47:14,360 DESCRIBE OUTCOMES FROM THERAPIES 7458 04:47:14,360 --> 04:47:17,360 AND CORRELATE WITH CLINICAL 7459 04:47:17,360 --> 04:47:17,880 EXPECTATIONS. 7460 04:47:17,880 --> 04:47:18,960 WITH THAT I WOULD LIKE TO THANK 7461 04:47:18,960 --> 04:47:22,360 ALL THE PATIENTS IN THE FAMILIES 7462 04:47:22,360 --> 04:47:24,040 THAT ALLOW AND HAVE SPENT SO 7463 04:47:24,040 --> 04:47:26,000 MUCH TIME WITH US AND ALLOW US 7464 04:47:26,000 --> 04:47:28,360 AND ENTRUST US WITH THEIR 7465 04:47:28,360 --> 04:47:31,160 MEDICAL CARE TO THE SHEEHAN LAB 7466 04:47:31,160 --> 04:47:34,240 AT EMORY AND VIVIEN SHEEHAN WHO 7467 04:47:34,240 --> 04:47:37,680 HAS RUN ALL THE SAMPLES WE RUN 7468 04:47:37,680 --> 04:47:40,320 PORCH TO OUR TEXAS CHILDREN'S 7469 04:47:40,320 --> 04:47:40,920 PROCUREMENT TEAM WHO PROCESS 7470 04:47:40,920 --> 04:47:44,720 BLOOD SAMPLES AND TO OUR BONE 7471 04:47:44,720 --> 04:47:46,520 MARROW TRANSPLANTS AT CHILDREN'S 7472 04:47:46,520 --> 04:47:49,600 TEXAS HOSPITAL WHERE WE SEE 7473 04:47:49,600 --> 04:47:51,200 NUMEROUS PATIENTS DAILY AND 7474 04:47:51,200 --> 04:47:54,120 THANK YOU FOR TO THE NIH FOR 7475 04:47:54,120 --> 04:47:57,720 ALLOWING ME TO PRESENT TODAY. 7476 04:47:57,720 --> 04:47:58,320 WITH THAT I CAN ANSWER SOME 7477 04:47:58,320 --> 04:48:08,480 QUESTIONS. 7478 04:48:10,160 --> 04:48:14,480 >> THAT'S A TYPICAL TRANSFUSED 7479 04:48:14,480 --> 04:48:17,880 TO 30% HEMOGLOBIN SICKLING AND 7480 04:48:17,880 --> 04:48:21,640 WE TOOK A PATIENT ON TRANSFUSION 7481 04:48:21,640 --> 04:48:24,360 AND SUPERIOR IMPOSED THE CURVE 7482 04:48:24,360 --> 04:48:25,760 WITH MIXED CHIMERISM WHICH 7483 04:48:25,760 --> 04:48:30,080 SHOULD HAVE BEEN ENOUGH TO BE 7484 04:48:30,080 --> 04:48:33,600 CURATIVE AND APPEARS TO BE MORE 7485 04:48:33,600 --> 04:48:37,560 SIMILAR TO A CHRONICALLY 7486 04:48:37,560 --> 04:48:39,240 TRANSFUSED TRANSPLANT PATIENT 7487 04:48:39,240 --> 04:48:41,240 WHICH IS NOT CURATIVE. 7488 04:48:41,240 --> 04:48:42,960 AND THERE'LL BE AN OPPORTUNITY 7489 04:48:42,960 --> 04:48:44,280 TO ASK QUESTIONS AT THE END AS 7490 04:48:44,280 --> 04:48:50,680 WELL. 7491 04:48:50,680 --> 04:48:52,680 >> WITH THAT I'LL INTRODUCE 7492 04:48:52,680 --> 04:48:56,880 DR. CHRISTINA CARUSO FROM EMORY 7493 04:48:56,880 --> 04:48:57,160 UNIVERSITY. 7494 04:48:57,160 --> 04:48:59,560 BEFORE I DO THAT I WANT TO SAY 7495 04:48:59,560 --> 04:49:00,320 CONGRATULATIONS. 7496 04:49:00,320 --> 04:49:03,800 WE HAVE SOMEONE WHO JUST 7497 04:49:03,800 --> 04:49:04,640 CELEBRATED SIX YEARS AND WE'RE 7498 04:49:04,640 --> 04:49:08,240 VERY GRATEFUL TO HERE ALL THE 7499 04:49:08,240 --> 04:49:10,240 NEW OUTCOMES AND CONGRATULATIONS 7500 04:49:10,240 --> 04:49:10,920 TO YOU. 7501 04:49:10,920 --> 04:49:14,480 AND WITH THAT TO DR. CHRIS DENA 7502 04:49:14,480 --> 04:49:15,960 CARUSO FROM EMORY. 7503 04:49:15,960 --> 04:49:18,680 >> HI, EVERYBODY. 7504 04:49:18,680 --> 04:49:21,240 HOPEFULLY YOU'RE ABLE TO HEAR ME 7505 04:49:21,240 --> 04:49:31,680 WHILE I PULL UP MY SLIDES. 7506 04:49:38,960 --> 04:49:39,920 ALL RIGHT. 7507 04:49:39,920 --> 04:49:44,520 ARE YOU ABLE TO SEE MY SLIDES? 7508 04:49:44,520 --> 04:49:45,040 OKAY. 7509 04:49:45,040 --> 04:49:45,840 WELL, GOOD AFTERNOON. 7510 04:49:45,840 --> 04:49:48,360 MY NAME IS CHRISTINA CARUSO. 7511 04:49:48,360 --> 04:49:51,680 I'M AN INSTRUCTOR AT EMORY AND 7512 04:49:51,680 --> 04:49:54,120 WILL BE DISCUSSING SOME OF OUR 7513 04:49:54,120 --> 04:49:58,320 WORK IN THE LAB DURING 7514 04:49:58,320 --> 04:50:00,400 LEVERAGING MICROFLUIDICS ASSAYS 7515 04:50:00,400 --> 04:50:03,200 AS FUNCTIONAL ANALYSIS TOOLS IN 7516 04:50:03,200 --> 04:50:04,280 SICKLE CELL DISEASE. 7517 04:50:04,280 --> 04:50:06,360 ARE YOU GUYS ABLE TO SEE MINE? 7518 04:50:06,360 --> 04:50:07,960 IT SAYS IT'S PAUSED ON MY 7519 04:50:07,960 --> 04:50:08,520 SCREEN. 7520 04:50:08,520 --> 04:50:19,040 >> I'M NOT SEEING YOUR SLIDES. 7521 04:50:36,520 --> 04:50:38,360 >> HERE'S A BRIEF OUTLINE OF 7522 04:50:38,360 --> 04:50:40,560 WHAT I PLAN TO TALK TO YOU ALL 7523 04:50:40,560 --> 04:50:42,240 ABOUT DURING THIS PRESENTATION. 7524 04:50:42,240 --> 04:50:48,840 SO I'LL GIVE SOME BACKGROUND ON 7525 04:50:48,840 --> 04:50:50,120 MICROFLUIDIC IS AS AND WHY 7526 04:50:50,120 --> 04:50:54,240 THEY'RE GREAT TOOLS FOR STUDYING 7527 04:50:54,240 --> 04:50:55,280 SICKLE CELL DISEASE AS WELL AS 7528 04:50:55,280 --> 04:50:57,240 OTHER HEMATOLOGIC DISORDERS AND 7529 04:50:57,240 --> 04:50:59,240 LOOK AT THE PATHOPHYSIOLOGY THAT 7530 04:50:59,240 --> 04:51:01,080 CAN BE ASSESSED IN ADDITION TO 7531 04:51:01,080 --> 04:51:04,320 HOW SOME OF THE APPLICATIONS CAN 7532 04:51:04,320 --> 04:51:08,160 BE COUPLED WITH HEMATOLOGY 7533 04:51:08,160 --> 04:51:10,600 SOFTWARE FOR ROBUST OUTPUT. 7534 04:51:10,600 --> 04:51:12,520 THIS PRESENTATION WILL SERVE AS 7535 04:51:12,520 --> 04:51:15,840 A LITTLE BIT OF A MICROFLUIDIC 7536 04:51:15,840 --> 04:51:19,280 BUFFET WHERE I GIVE A SMALL 7537 04:51:19,280 --> 04:51:21,320 TASTE OF THE EXPERIMENTS 7538 04:51:21,320 --> 04:51:22,680 PERFORMED WITH OUR ASSAYS. 7539 04:51:22,680 --> 04:51:26,040 I KNOW I DON'T NEED TO INTRODUCE 7540 04:51:26,040 --> 04:51:27,440 THE RED CELL TO THIS AUDIENCE 7541 04:51:27,440 --> 04:51:29,360 BUT I WILL MENTION THERE'S MANY 7542 04:51:29,360 --> 04:51:31,160 CLINICAL PROPERTIES THAT ALLOW 7543 04:51:31,160 --> 04:51:33,760 FOR IT TO DO ITS JOB WELL AND IN 7544 04:51:33,760 --> 04:51:36,360 PARTICULAR THE CELL MEMBRANE 7545 04:51:36,360 --> 04:51:39,200 PROVIDES PROPERTIES ESSENTIAL 7546 04:51:39,200 --> 04:51:41,400 FOR PHYSIOLOGIC CELL FUNCTION 7547 04:51:41,400 --> 04:51:43,920 AND TRA FIRSTING THE CIRCULATORY 7548 04:51:43,920 --> 04:51:44,640 SYSTEM AND IN PARTICULAR THE 7549 04:51:44,640 --> 04:51:53,880 CAPILLARY NETWORK. 7550 04:51:53,880 --> 04:51:57,520 THEY'RE ALTERED IN SICKLE CELL 7551 04:51:57,520 --> 04:51:58,520 DISEASE AND PREVIOUSLY DISCUSSED 7552 04:51:58,520 --> 04:52:02,680 AND THE DECREASED DEFORMABILITY 7553 04:52:02,680 --> 04:52:04,360 AND RED CELLS AND OTHER 7554 04:52:04,360 --> 04:52:05,440 DISORDERS ARE OF PARTICULAR 7555 04:52:05,440 --> 04:52:06,080 INTEREST TO ME AND OTHERS IN OUR 7556 04:52:06,080 --> 04:52:10,320 GROUP. 7557 04:52:10,320 --> 04:52:15,200 WHY IS RED CELL DEFORMABILITY 7558 04:52:15,200 --> 04:52:15,760 IMPORTANT? 7559 04:52:15,760 --> 04:52:20,840 ALTERATIONS IN THE PHYSICAL 7560 04:52:20,840 --> 04:52:25,200 PROPERTIES SICH AS AND SUCH 7561 04:52:25,200 --> 04:52:29,000 ALTERATIONS CAN IMPACT 7562 04:52:29,000 --> 04:52:30,920 ENDOTHELIAL FUNCTION AND IMPACT 7563 04:52:30,920 --> 04:52:32,800 MANY FUNCTIONS AND THE FUNCTION 7564 04:52:32,800 --> 04:52:41,120 CAN PLAY A ROLE IN VASCULOPATHY 7565 04:52:41,120 --> 04:52:44,200 AND SOME TECHNIQUES LOOK AT THE 7566 04:52:44,200 --> 04:52:47,200 ENTIRE RED CELL POPULATION AND 7567 04:52:47,200 --> 04:52:49,800 THOSE THAT ASSESS DEFORMABILITY 7568 04:52:49,800 --> 04:52:54,560 AND YOU LOOKED AT ONE TOOL IN 7569 04:52:54,560 --> 04:52:57,640 EKTACYTOMETRY AND AN EXAMPLE IS 7570 04:52:57,640 --> 04:53:00,520 ATOMIC FORCE MICROSCOPY. 7571 04:53:00,520 --> 04:53:03,520 IT CAN GATHER INFORMATION BY 7572 04:53:03,520 --> 04:53:05,320 FEELING OR TOUCHING A SURFACE 7573 04:53:05,320 --> 04:53:08,680 WITH THE MECHANICAL PROBE AND AN 7574 04:53:08,680 --> 04:53:10,000 ABILITY IS TO MEASURE THE FORCES 7575 04:53:10,000 --> 04:53:11,480 BETWEEN THE PROBE AND THE SAMPLE 7576 04:53:11,480 --> 04:53:14,240 AS A FUNCTION OF THEIR MUTUAL 7577 04:53:14,240 --> 04:53:14,600 SEPARATION. 7578 04:53:14,600 --> 04:53:17,000 AND THIS CAN BE APPLIED TO 7579 04:53:17,000 --> 04:53:19,200 MEASURE THE MECHANICAL 7580 04:53:19,200 --> 04:53:20,840 PROPERTIES SUCH AS THE MEASURE 7581 04:53:20,840 --> 04:53:24,360 OF STIFFNESS. 7582 04:53:24,360 --> 04:53:27,760 AFM IS FANTASTIC AT MEASURING 7583 04:53:27,760 --> 04:53:28,360 VARIATIONS AT THE SINGLE CELL 7584 04:53:28,360 --> 04:53:31,320 LEVEL BUT TIME INTENSIVE AND 7585 04:53:31,320 --> 04:53:34,360 THROUGHPUT SO NOT ENTIRELY 7586 04:53:34,360 --> 04:53:36,560 REPRESENTATIVE OF A POPULATION. 7587 04:53:36,560 --> 04:53:40,840 CAN THESE MODELS DESIGN TO MIMIC 7588 04:53:40,840 --> 04:53:43,680 THE VASCULATURE LOOK AT 7589 04:53:43,680 --> 04:53:46,000 PROPERTIES OF RED CELLS AND 7590 04:53:46,000 --> 04:53:48,160 ALTERED FLOW AND ENDOTHELIAL 7591 04:53:48,160 --> 04:53:54,400 FUNCTION AND THE ANSWER IS A 7592 04:53:54,400 --> 04:53:59,920 RESOUNDING YES AND YOU SEE THE 7593 04:53:59,920 --> 04:54:01,360 DEVICE ON THE TOP LEFT AND IF 7594 04:54:01,360 --> 04:54:03,120 YOU TAKE THAT OPPOSED TO THE 7595 04:54:03,120 --> 04:54:06,320 SIGNIFICANTLY DISTURBED OR 7596 04:54:06,320 --> 04:54:10,360 ALTERED FLOW SEEN ON THE BOTTOM 7597 04:54:10,360 --> 04:54:15,040 INCLUDING CHANNELS WITH FULL 7598 04:54:15,040 --> 04:54:19,120 OCCLUSION WITH A PATIENT WITH 7599 04:54:19,120 --> 04:54:19,560 SICKLE CELL DISEASE. 7600 04:54:19,560 --> 04:54:22,640 SO ENDOTHELIALIZED MODELS CAN 7601 04:54:22,640 --> 04:54:27,200 SERVE AS A MODEL OF THE 7602 04:54:27,200 --> 04:54:28,760 VASCULATURE AND THESE ARE THE 7603 04:54:28,760 --> 04:54:31,200 TWO I'VE USED IN THE LAB WITH 7604 04:54:31,200 --> 04:54:32,840 THE TOP SHOWING A STRAIGHT 7605 04:54:32,840 --> 04:54:35,080 CHANNEL DEVICE WHERE EACH HAS A 7606 04:54:35,080 --> 04:54:38,200 DIAMETER OF 100 MICRONS AND THE 7607 04:54:38,200 --> 04:54:39,560 BOTTOM SHOWING A 32-CHANNEL 7608 04:54:39,560 --> 04:54:41,280 BRANCHING DEVICE WHERE THE 7609 04:54:41,280 --> 04:54:42,840 SMALLEST BRANCHES HAVE A 7610 04:54:42,840 --> 04:54:47,240 DIAMETER OF 30 MICRONS. 7611 04:54:47,240 --> 04:54:48,880 IN THE LAB WE UTILIZE DIFFERENT 7612 04:54:48,880 --> 04:54:51,400 SIZES OR GEOMETRIES OR 7613 04:54:51,400 --> 04:54:51,760 CONFIGURATIONS. 7614 04:54:51,760 --> 04:54:54,400 ON THE RIGHT YOU CAN SEE A 7615 04:54:54,400 --> 04:54:56,600 CARTOON OF HOW WE ENDOTHELIALIZE 7616 04:54:56,600 --> 04:54:57,320 THE DEVICES. 7617 04:54:57,320 --> 04:55:01,160 WE START WITH A SILICONE-BASED 7618 04:55:01,160 --> 04:55:02,960 DEVICE BONDED TO A COVER SLIP 7619 04:55:02,960 --> 04:55:06,880 AND INTRODUCE ENDOTHELIAL CELLS 7620 04:55:06,880 --> 04:55:08,480 IN THE DEVICES AND EXPOSE THEM 7621 04:55:08,480 --> 04:55:11,200 TO PHYSIO LOGIC FLOW LEADING TO 7622 04:55:11,200 --> 04:55:19,040 A HOMOGENEOUS LAYER LINING THE 7623 04:55:19,040 --> 04:55:19,920 MICROFLUIDIC DEVICE. 7624 04:55:19,920 --> 04:55:23,760 AS ENDOTHELIAL CELLS RESPOND 7625 04:55:23,760 --> 04:55:25,480 POSITIVELY TO FLOW CONDITIONS WE 7626 04:55:25,480 --> 04:55:29,320 CAN USE THAT IN CREATING OUR 7627 04:55:29,320 --> 04:55:29,520 DEVICES. 7628 04:55:29,520 --> 04:55:32,400 ON THE RIGHT SIDE WHEN NO FLOW 7629 04:55:32,400 --> 04:55:35,160 IS APPLIED, CELLS LOOK 7630 04:55:35,160 --> 04:55:41,800 DISORGANIZED AND HETEROGENEOUS 7631 04:55:41,800 --> 04:55:47,200 BUT THEY WHEN HAPPY THEY CAN 7632 04:55:47,200 --> 04:55:49,360 ARRANGE IN A NICE LAYER ON THE 7633 04:55:49,360 --> 04:55:49,560 LEFT. 7634 04:55:49,560 --> 04:55:50,760 WHAT ARE SOME WAYS THE ASSAYS 7635 04:55:50,760 --> 04:55:53,160 CAN BE APPLIED TO THE STUDY OF 7636 04:55:53,160 --> 04:55:57,000 SICKLE CELL DISEASE? 7637 04:55:57,000 --> 04:55:59,280 WELL, WE SINGLE CELL 7638 04:55:59,280 --> 04:56:01,680 MEASUREMENTS AND ASSAYS AND DO 7639 04:56:01,680 --> 04:56:04,480 BULK CELL SUSPENSION 7640 04:56:04,480 --> 04:56:06,520 MEASUREMENTS SUCH AS OCCLUSION 7641 04:56:06,520 --> 04:56:09,960 ASSAYS AND LOOK BEYOND THE BLOOD 7642 04:56:09,960 --> 04:56:12,160 AND MEASURE ENDOTHELIAL HEALTH 7643 04:56:12,160 --> 04:56:12,640 AND DYSFUNCTION. 7644 04:56:12,640 --> 04:56:15,600 WITH ALL THESE ASSAYS AND 7645 04:56:15,600 --> 04:56:17,920 APPLICATIONS IS MANUAL DATA 7646 04:56:17,920 --> 04:56:19,000 ANALYSIS OUR ONLY OPTION? 7647 04:56:19,000 --> 04:56:22,360 I'M THE FIRST TO ADMIT I'VE DONE 7648 04:56:22,360 --> 04:56:25,960 MY FIRST SHARE OF MANUAL 7649 04:56:25,960 --> 04:56:27,200 ANALYSIS WITHIN MICROFLUIDIC 7650 04:56:27,200 --> 04:56:28,680 DEVICES FOR SOME OF MY 7651 04:56:28,680 --> 04:56:30,600 EXPERIMENTS AND PARTICULARLY IN 7652 04:56:30,600 --> 04:56:35,240 REGARD TO ASSESSING ENDOTHELIAL 7653 04:56:35,240 --> 04:56:36,600 DYSFUNCTION. 7654 04:56:36,600 --> 04:56:37,400 HOWEVER, MANUAL ANALYSIS CAN BE 7655 04:56:37,400 --> 04:56:39,160 ERROR PRONE. 7656 04:56:39,160 --> 04:56:41,720 THANKS TO A WONDERFUL GRADUATE 7657 04:56:41,720 --> 04:56:44,040 STUDENT IN OUR LAB WE NOW HAVE A 7658 04:56:44,040 --> 04:56:46,360 PRECISE AND COMPREHENSIVE 7659 04:56:46,360 --> 04:56:48,520 SOFTWARE ANALYSIS TOOL CALLED 7660 04:56:48,520 --> 04:56:50,120 I-PLOTS WHICH HAS BEEN MADE OPEN 7661 04:56:50,120 --> 04:56:52,360 SOURCE THAT CAN BE LEVERAGED IN 7662 04:56:52,360 --> 04:56:55,400 CONJUNCTION WITH MANY OF OUR 7663 04:56:55,400 --> 04:56:56,360 MICROFLUIDIC ASSAYS AS WELL AS 7664 04:56:56,360 --> 04:56:59,240 FOR OTHER APPLICATIONS. 7665 04:56:59,240 --> 04:57:01,800 SO JUST A LITTLE BRIEF 7666 04:57:01,800 --> 04:57:03,240 INTRODUCTION TO THAT SOFTWARE 7667 04:57:03,240 --> 04:57:05,280 BEFORE I TELL YOU ABOUT SOME OF 7668 04:57:05,280 --> 04:57:07,960 OUR ASSAYS AND ITS APPLICATIONS. 7669 04:57:07,960 --> 04:57:10,520 THE SOFTWARE ENABLES THE 7670 04:57:10,520 --> 04:57:11,880 QUANTIFICATION OF MICROSCOPY 7671 04:57:11,880 --> 04:57:15,200 DATA FROM A WIDE RANGE OF 7672 04:57:15,200 --> 04:57:17,160 HEMATOLOGY ASSAYS. 7673 04:57:17,160 --> 04:57:20,520 IT'S VERSATILE METHODS ADOPT TO 7674 04:57:20,520 --> 04:57:21,960 VIDEO MICROSCOPY OF CELLS AND 7675 04:57:21,960 --> 04:57:24,920 CELL SUSPENSIONS FROM TAKEN FROM 7676 04:57:24,920 --> 04:57:26,080 A VARIETY OF EXPERIMENTAL 7677 04:57:26,080 --> 04:57:28,360 SYSTEMS AND DEVICES INCLUDING 7678 04:57:28,360 --> 04:57:33,400 WITHIN BULK STATIC AND 7679 04:57:33,400 --> 04:57:34,600 FLOW-BASED DEVICES AND HERE'S 7680 04:57:34,600 --> 04:57:37,120 EXAMPLES ON THE LEFT OF THE 7681 04:57:37,120 --> 04:57:37,600 FIGURE. 7682 04:57:37,600 --> 04:57:41,680 AND I-PLOTS ANALYZES EXTERNALLY 7683 04:57:41,680 --> 04:57:43,840 COLLECTED DATA MAKING IT 7684 04:57:43,840 --> 04:57:47,200 SUITABLE FOR DATA PREVIOUSLY 7685 04:57:47,200 --> 04:57:49,960 COLLECTED OR NEW AND YOU CAN 7686 04:57:49,960 --> 04:57:53,000 SELECT VARIATIONS AND 7687 04:57:53,000 --> 04:57:54,160 ACCUMULATION APPLICATION THAT'S 7688 04:57:54,160 --> 04:57:56,240 PROMOTE FOR THE EXPERIMENT THEY 7689 04:57:56,240 --> 04:57:58,200 PERFORMED AND EACH APPLICATION 7690 04:57:58,200 --> 04:58:00,000 FACILITATES INTERACTIVE ANALYSIS 7691 04:58:00,000 --> 04:58:03,240 OF A SPECIFIC EXPERIMENTAL WORK 7692 04:58:03,240 --> 04:58:03,640 FLOW. 7693 04:58:03,640 --> 04:58:07,240 AND THEN FROM THE PROVIDED 7694 04:58:07,240 --> 04:58:11,200 MICROSCOPY IMAGING DATA DATA 7695 04:58:11,200 --> 04:58:13,960 CORRESPONDING TO EACH INDEX ON 7696 04:58:13,960 --> 04:58:23,720 AN INPUT FILE IS AUTOMATICALLY 7697 04:58:23,720 --> 04:58:32,280 GENERATE AND CLUSTERING 7698 04:58:32,280 --> 04:58:34,360 ALGORITHM AND IT CAN BE USED 7699 04:58:34,360 --> 04:58:39,840 WITH THE CREATION OF A SINGLE 7700 04:58:39,840 --> 04:58:43,000 CELL DEFORMABILITY INDEX DEFINED 7701 04:58:43,000 --> 04:58:47,080 AS THE VELOCITY AND THE CELLS 7702 04:58:47,080 --> 04:58:49,120 PASSING THROUGH THE CAPILLARY 7703 04:58:49,120 --> 04:58:49,360 CHANNELS. 7704 04:58:49,360 --> 04:58:51,120 YOU CAN SEE A MICROSCOPIC VIEW 7705 04:58:51,120 --> 04:58:56,840 ON THE TOP OF OUR SINGLE-CELL 7706 04:58:56,840 --> 04:58:58,080 MICROFLUIDIC DEVICE DESIGNED TO 7707 04:58:58,080 --> 04:59:02,160 MIMIC THE CAPILLARY BED WITH THE 7708 04:59:02,160 --> 04:59:07,320 MICROSCOPY ON THE BOTTOM OF THE 7709 04:59:07,320 --> 04:59:10,200 REGION OF INTEREST OF 20X 7710 04:59:10,200 --> 04:59:13,360 MAGNIFY FICTION AND YOU CAN SEE 7711 04:59:13,360 --> 04:59:17,520 WHAT TRAVEL THE CHANNELS CIRCLED 7712 04:59:17,520 --> 04:59:19,040 IN GREEN HERE AND THEN IN THE 7713 04:59:19,040 --> 04:59:20,520 MIDDLE YOU CAN SEE THE SELECT 7714 04:59:20,520 --> 04:59:24,760 IMAGES FROM THE SOFTWARE OUTPUT 7715 04:59:24,760 --> 04:59:27,080 SHOWING A REPRESENTATIVE HEALTHY 7716 04:59:27,080 --> 04:59:29,040 CONTROL RED CELL IN THIS CASE 7717 04:59:29,040 --> 04:59:31,200 BEING TRACKED ACROSS FRAMES AND 7718 04:59:31,200 --> 04:59:33,760 THE SOFTWARE REPORTS CELL SIZE 7719 04:59:33,760 --> 04:59:36,800 PRIOR TO THE CELL'S ENTRY INTO 7720 04:59:36,800 --> 04:59:38,200 THE SMALLEST CHANNELS BEFORE THE 7721 04:59:38,200 --> 04:59:39,800 SHAPE HAS BEEN CHANGED OR 7722 04:59:39,800 --> 04:59:40,640 ALTERED IN ANY WAY. 7723 04:59:40,640 --> 04:59:44,440 ON THE RIGHT YOU CAN SEE A VIDEO 7724 04:59:44,440 --> 04:59:45,760 WHICH HAS SLOWED DOWN TO MAKE IT 7725 04:59:45,760 --> 04:59:46,680 EASIER TO SEE. 7726 04:59:46,680 --> 04:59:49,680 I HOPE YOU CAN APPRECIATE SOME 7727 04:59:49,680 --> 04:59:51,880 OF THE RED CELLS SQUEEZING INTO 7728 04:59:51,880 --> 04:59:54,880 AND TRAVERSING THE 7729 04:59:54,880 --> 04:59:55,280 MICROCHANNELS. 7730 04:59:55,280 --> 04:59:58,600 AND THEN HERE YOU CAN SEE SOME 7731 04:59:58,600 --> 05:00:01,720 REAL-TIME ANALYSIS WITHIN 7732 05:00:01,720 --> 05:00:03,200 I-PLOTS OF SINGLE CELL DEFORMITY 7733 05:00:03,200 --> 05:00:06,680 MEASUREMENTS OF HEALTHY 7734 05:00:06,680 --> 05:00:08,080 CONTROLLED RED CELLS IN BLUE AND 7735 05:00:08,080 --> 05:00:10,360 SICKLE CELLS IN RED AND A REGION 7736 05:00:10,360 --> 05:00:13,800 WAS SELECTED THE ENTIRE LENGTH 7737 05:00:13,800 --> 05:00:18,760 OF THE CAPILLARY CHANNEL AND THE 7738 05:00:18,760 --> 05:00:20,400 MEASUREMENT OF DEFORMABILITY ARE 7739 05:00:20,400 --> 05:00:22,640 SHOWN ON THE RIGHT AS ACQUIRED 7740 05:00:22,640 --> 05:00:24,880 AND EVEN WITH THE SMALL SNAPSHOT 7741 05:00:24,880 --> 05:00:28,720 OF CELLS YOU CAN SEE THE SICKLE 7742 05:00:28,720 --> 05:00:31,840 CELL RED CELLS HAVE A LESS 7743 05:00:31,840 --> 05:00:33,480 DEFORMABLE THAN HEALTHY CONTROL 7744 05:00:33,480 --> 05:00:34,320 CELLS. 7745 05:00:34,320 --> 05:00:38,840 AND HERE ON THE LEFT IS SDI DATA 7746 05:00:38,840 --> 05:00:40,960 FOR RED CELLS FROM ONE HEALTHY 7747 05:00:40,960 --> 05:00:46,720 DONOR IN BLUE AND ONE HEMOGLOBIN 7748 05:00:46,720 --> 05:00:48,520 PATIENT IN RED AND THIS SHOWS 7749 05:00:48,520 --> 05:00:50,320 FROM FIVE MICROLITERS OF BLOOD 7750 05:00:50,320 --> 05:00:53,040 IN THE CASE WE ANALYZED A TOTAL 7751 05:00:53,040 --> 05:00:59,960 OF 1500 HEALTHY CELLS AND 250000 7752 05:00:59,960 --> 05:01:02,800 SICKLE RED CELLS AND THEY WERE 7753 05:01:02,800 --> 05:01:06,160 FOUND LESS DEFORMABLE THAN 7754 05:01:06,160 --> 05:01:09,400 HEALTHY CONTROLS AND A 7755 05:01:09,400 --> 05:01:15,200 POPULATION OF SICKLE CELL RANGE 7756 05:01:15,200 --> 05:01:21,600 AND IN ADDITIONALLY THE SOFTWARE 7757 05:01:21,600 --> 05:01:23,240 CLUSTERING ALGORITHMS COMBINED 7758 05:01:23,240 --> 05:01:24,920 DISEASED AND HEALTHY CELLS INTO 7759 05:01:24,920 --> 05:01:27,080 A MATHEMATICALLY DEFINED 7760 05:01:27,080 --> 05:01:30,680 CLUSTERS SHOWN ON THE RIGHT SIDE 7761 05:01:30,680 --> 05:01:31,320 AND DIFFERENCES BETWEEN EVENT 7762 05:01:31,320 --> 05:01:35,520 FREQUENCY WITHIN CLUSTER SHOW 7763 05:01:35,520 --> 05:01:36,920 MORE SICKLE CELL EXIST IN THE 7764 05:01:36,920 --> 05:01:40,880 SMALLER LOW SDI CLUSTER 7765 05:01:40,880 --> 05:01:42,120 DEMONSTRATED IN YELLOW WHICH IS 7766 05:01:42,120 --> 05:01:44,480 IN SUPPORT OF THE FINDINGS FROM 7767 05:01:44,480 --> 05:01:45,160 THE OVER ALL PATIENT POPULATION 7768 05:01:45,160 --> 05:01:48,120 WHICH IS SEEN ON THE LEFT. 7769 05:01:48,120 --> 05:01:51,680 AND IN ADDITION YOU CAN ALSO SEE 7770 05:01:51,680 --> 05:01:53,560 WITHIN THE CLUSTER INFORMATION 7771 05:01:53,560 --> 05:01:55,160 THAT SIZE OF RED CELLS IS 7772 05:01:55,160 --> 05:01:57,800 MEASURED IN ADDITION TO THE 7773 05:01:57,800 --> 05:01:59,560 DEFORMABILITY DATA AND ALLOWS 7774 05:01:59,560 --> 05:02:02,880 FOR THE CREATION OF THE PLOT OF 7775 05:02:02,880 --> 05:02:04,360 SDI VERSUS CELL SIZE. 7776 05:02:04,360 --> 05:02:06,720 YOU CAN EASILY APPRECIATE THE 7777 05:02:06,720 --> 05:02:09,720 INCREASED HETEROGENEITY OF RED 7778 05:02:09,720 --> 05:02:11,400 CELLS WITHIN THE DATA AND IN 7779 05:02:11,400 --> 05:02:16,240 ADDITION TO ISOLATED RED CELLS 7780 05:02:16,240 --> 05:02:19,200 ARE COUPLED WITH OUR 7781 05:02:19,200 --> 05:02:20,920 MICROFLUIDIC CAN SUPPORT 7782 05:02:20,920 --> 05:02:22,040 ANALYSIS OF VARIOUS CELL LINES 7783 05:02:22,040 --> 05:02:24,400 AS WELL AS FLUORESCENTLY TAGGED 7784 05:02:24,400 --> 05:02:34,200 CELLS SUCH AS RETICULOCYTES AND 7785 05:02:34,200 --> 05:02:37,360 NEXT YOU'LL DISCUSS OUR 7786 05:02:37,360 --> 05:02:43,280 OCCLUSION STUDIES IN OUR 7787 05:02:43,280 --> 05:02:49,400 MICROFLUIDICS. 7788 05:02:49,400 --> 05:02:53,160 AND SOME CHANNELS ARE COMPLETELY 7789 05:02:53,160 --> 05:02:55,280 OCCLUDED WHILE OTHERS HAVE 7790 05:02:55,280 --> 05:02:57,320 PARTIAL OCCLUSION AND THERE'S 7791 05:02:57,320 --> 05:02:58,360 CLEAR ALTERATIONS IN FLOW 7792 05:02:58,360 --> 05:03:04,880 DEMONSTRATED AS WELL. 7793 05:03:04,880 --> 05:03:06,160 SO THERE'S A LOT GOING ON THE 7794 05:03:06,160 --> 05:03:07,480 SLIDE AND I'LL HIGHLIGHT WHAT 7795 05:03:07,480 --> 05:03:07,840 YOU'RE SEEING. 7796 05:03:07,840 --> 05:03:10,360 AND THIS IS ACTUALLY SHOWING 7797 05:03:10,360 --> 05:03:14,680 SOME ACCUMULATION AND OCCLUSION 7798 05:03:14,680 --> 05:03:15,840 DATA WITH ITS ANALYSIS WITHIN 7799 05:03:15,840 --> 05:03:20,640 THE I-PLOTS. 7800 05:03:20,640 --> 05:03:22,840 OCCLUSION AND ACCUMULATION CAN 7801 05:03:22,840 --> 05:03:26,760 BE USED WITH COMMERCIALLY 7802 05:03:26,760 --> 05:03:28,160 AVAILABLE AND SPECIALLY DESIGNED 7803 05:03:28,160 --> 05:03:30,960 MICROFLUIDIC DEVICES AND IT'S 7804 05:03:30,960 --> 05:03:34,080 SHOWN WITH OUR MICROVASCULATURE 7805 05:03:34,080 --> 05:03:38,840 ON THE MICROCHIP DEVICES AND WE 7806 05:03:38,840 --> 05:03:40,360 LOOKED AT THE WHOLE BLOOD 7807 05:03:40,360 --> 05:03:43,240 SAMPLES AND IT CAN USE SIGNAL 7808 05:03:43,240 --> 05:03:46,680 FROM FLUORESCENT MICROSCOPY TO 7809 05:03:46,680 --> 05:03:48,040 AUTOMATICALLY CREATE A DETAILED 7810 05:03:48,040 --> 05:03:51,200 MAP OF DEVICE CHANNELS AS SHOWN 7811 05:03:51,200 --> 05:03:57,040 ON THE LEFT OF THE SLIDE. 7812 05:03:57,040 --> 05:04:01,280 AND OCCLUSION HAS FLUORESCENT 7813 05:04:01,280 --> 05:04:03,120 MICROSCOPY IMAGES AND WHAT 7814 05:04:03,120 --> 05:04:04,880 ACCUMULATION IS FOR THIS IS 7815 05:04:04,880 --> 05:04:07,200 CALCULATED AS THE CHANGE IN 7816 05:04:07,200 --> 05:04:09,640 FLUORESCENT MICROSCOPY IMAGE 7817 05:04:09,640 --> 05:04:11,240 AREA RELATIVE TO THE PREVIOUS 7818 05:04:11,240 --> 05:04:11,720 FRAME. 7819 05:04:11,720 --> 05:04:16,080 ACCUMULATION RATES AND OCCLUSION 7820 05:04:16,080 --> 05:04:17,400 WON'T CHANGE BUT IT ALLOWS FOR 7821 05:04:17,400 --> 05:04:21,280 THE STUDY OF OCCLUSION OR 7822 05:04:21,280 --> 05:04:25,520 THROMBUS INSTABILITY AND DATA 7823 05:04:25,520 --> 05:04:28,320 FROM THE SHED AN OVER ALL 7824 05:04:28,320 --> 05:04:32,080 DECREASED PERCENTAGE OF OCCLUDED 7825 05:04:32,080 --> 05:04:33,520 CHANNELS AND LOOKING AT THE 7826 05:04:33,520 --> 05:04:38,280 COMPARISON TO CONTROL. 7827 05:04:38,280 --> 05:04:41,600 SO THIS IS A LITTLE BIT 7828 05:04:41,600 --> 05:04:42,760 DIFFERENT MICROFLUIDIC SYSTEM 7829 05:04:42,760 --> 05:04:48,920 AND THIS IS AN ENDOTHELIALIZED 7830 05:04:48,920 --> 05:04:51,240 MICROFLUIDIC SYSTEM UTILIZED BY 7831 05:04:51,240 --> 05:04:54,200 SOME MEMBERS OF OUR LAB WITH A 7832 05:04:54,200 --> 05:05:01,120 HYDRO GEL AND ALLOWS FOR THE 7833 05:05:01,120 --> 05:05:02,880 RECAPITULATION OF THE MEMBRANE 7834 05:05:02,880 --> 05:05:05,960 DEPOSITION AND THE BARRIER 7835 05:05:05,960 --> 05:05:08,000 FUNCTION AND THIS SYSTEM CAN BE 7836 05:05:08,000 --> 05:05:10,360 SUSTAIN FOR LONGER THAN ONE 7837 05:05:10,360 --> 05:05:12,920 MONTH SO OBVIOUSLY THAT'S UNLIKE 7838 05:05:12,920 --> 05:05:16,720 OTHER MICROVASCULATURE ON A CHIP 7839 05:05:16,720 --> 05:05:20,280 DEVICE FOR SINGLE OR SHORT-TERM 7840 05:05:20,280 --> 05:05:20,800 EXPERIMENTS. 7841 05:05:20,800 --> 05:05:25,440 THIS MICROSYSTEM ENABLES THE 7842 05:05:25,440 --> 05:05:28,480 REAL-TIME OBSTRUCTION AND 7843 05:05:28,480 --> 05:05:29,160 PERMEABILITY UNDER FLOW 7844 05:05:29,160 --> 05:05:29,480 CONDITIONS. 7845 05:05:29,480 --> 05:05:31,320 ON THE LEFT YOU CAN SEE THE TIME 7846 05:05:31,320 --> 05:05:36,400 LINE FOR THIS HYDRO GEL 7847 05:05:36,400 --> 05:05:37,520 EXPERIMENT OR BASELINE 7848 05:05:37,520 --> 05:05:41,360 PERMEABILITY WAS CHECKED AT DAY 7849 05:05:41,360 --> 05:05:43,760 14 AND PROFUSION OF CELLS AND 7850 05:05:43,760 --> 05:05:47,040 FOLLOWED BY MEASUREMENTS AFTER 7851 05:05:47,040 --> 05:05:50,160 THE SICKLE CELL PROFUSION HAD 7852 05:05:50,160 --> 05:05:50,440 COMPLETED. 7853 05:05:50,440 --> 05:05:58,080 YOU CAN SEE THE IMAGES ARE THE 7854 05:05:58,080 --> 05:05:59,920 MICROCHANNELS OCCLUDED BY SICKLE 7855 05:05:59,920 --> 05:06:01,520 CELLS STAMPED WITH THE WHITE 7856 05:06:01,520 --> 05:06:05,880 ARROWS AND THE RESULTING 7857 05:06:05,880 --> 05:06:08,080 CO-LOCALIZED ENDOTHELIAL 7858 05:06:08,080 --> 05:06:10,360 PERMEABILITY AND LEAKAGE ON THE 7859 05:06:10,360 --> 05:06:14,840 TAGGED VSA AS SHOWN OVER HERE. 7860 05:06:14,840 --> 05:06:17,240 SO THIS SLIDE SHOWS SOME IMAGES 7861 05:06:17,240 --> 05:06:20,720 OF BLOOD SMEARS REVEALING TWO 7862 05:06:20,720 --> 05:06:22,600 EXPERIMENTAL SCENARIOS INVOLVING 7863 05:06:22,600 --> 05:06:23,480 SICKLE CELL PATIENT BLOOD 7864 05:06:23,480 --> 05:06:26,880 SAMPLES AND THE AIM OF THIS 7865 05:06:26,880 --> 05:06:30,280 EXPERIMENT WAS TO ASSESS THE 7866 05:06:30,280 --> 05:06:33,520 ALTERATIONS AND ENDOTHELIAL P 7867 05:06:33,520 --> 05:06:36,080 PERMUTATION AND IT'S 7868 05:06:36,080 --> 05:06:39,160 HYPOTHESIZED A LOWER MESSAGE OF 7869 05:06:39,160 --> 05:06:42,080 ISCs WOULD NOT LEAD TO 7870 05:06:42,080 --> 05:06:43,880 PERMEABILITY CHANGES WHILE THE 7871 05:06:43,880 --> 05:06:46,240 HIGHER PERCENTAGE WAS 14% WOULD 7872 05:06:46,240 --> 05:06:51,200 LEAD TO OCCLUSION OR INCREASED 7873 05:06:51,200 --> 05:06:54,000 PERMEABILITY AND HERE YOU SEE 7874 05:06:54,000 --> 05:06:55,160 EPIFLUORESCENT IMAGES THAT 7875 05:06:55,160 --> 05:06:56,720 SHOWED PROFUSION OF THE LOW 7876 05:06:56,720 --> 05:06:59,320 PERCENT ANG OF ISCs CAUSED NO 7877 05:06:59,320 --> 05:07:01,520 CHANGE IN PERMEABILITY IN THE 7878 05:07:01,520 --> 05:07:04,480 ENGINEERED HYDRO GEL DEVICES. 7879 05:07:04,480 --> 05:07:07,760 AND RESULTS FROM THE HIGH ISC 7880 05:07:07,760 --> 05:07:10,360 DEVICES SHOWN ON THE BOTTOM 7881 05:07:10,360 --> 05:07:14,600 SHOWED THAT PROFUSION OF THE 7882 05:07:14,600 --> 05:07:18,640 ISCs SHOWED TEMPORARY 7883 05:07:18,640 --> 05:07:20,040 MICROCHANNEL OCCLUSION AND WE 7884 05:07:20,040 --> 05:07:22,360 SAW THERE WAS ENOUGH TO INDUCE 7885 05:07:22,360 --> 05:07:26,920 LOSS OF ENDOTHELIAL BARRIER 7886 05:07:26,920 --> 05:07:28,400 FUNCTION AND INCREASED 7887 05:07:28,400 --> 05:07:29,840 PERMEABILITY SEEN HERE FROM DAY 7888 05:07:29,840 --> 05:07:30,200 15. 7889 05:07:30,200 --> 05:07:32,040 WITHIN ONE DAY OF CONTINUED 7890 05:07:32,040 --> 05:07:36,480 CULTURE AND PROFUSION THE IFC 7891 05:07:36,480 --> 05:07:40,360 MICROCHANNEL WAS ABLE TO HEAL 7892 05:07:40,360 --> 05:07:42,280 AND GRADUALLY REGAIN ITS BARRIER 7893 05:07:42,280 --> 05:07:44,240 FUNCTION WHICH YOU CAN SEE DOWN 7894 05:07:44,240 --> 05:07:47,920 HERE IN 16 AND THIS IS JUST 7895 05:07:47,920 --> 05:07:51,200 QUANTITATIVELY SHOWN IN THE 7896 05:07:51,200 --> 05:07:52,120 GRAPH OVER HERE ON THE RIGHT. 7897 05:07:52,120 --> 05:07:54,920 OF COURSE WE'D WANT TO KNOW WHAT 7898 05:07:54,920 --> 05:07:57,760 IS GOING ON WITH THE ENDTHELIUM 7899 05:07:57,760 --> 05:08:00,120 BEFORE AND AFTER OUR 7900 05:08:00,120 --> 05:08:01,600 MICROFLUIDIC ASSAYS HERE SOME 7901 05:08:01,600 --> 05:08:03,880 IMAGING WHERE YOU CAN SEE THE 7902 05:08:03,880 --> 05:08:07,240 ENTIRE SURFACE OF A MICROFLUIDIC 7903 05:08:07,240 --> 05:08:11,480 DEVICE LINE WITH THE ENDOTHELIAL 7904 05:08:11,480 --> 05:08:13,880 CELLS PRIOR TO EXPOSURE TO ANY 7905 05:08:13,880 --> 05:08:14,280 COMPONENTS. 7906 05:08:14,280 --> 05:08:16,000 BRIEFLY HERE'S SOME OF MY DATA 7907 05:08:16,000 --> 05:08:19,200 FROM AN EXPERIMENT DESIGNED TO 7908 05:08:19,200 --> 05:08:21,360 QUANTIFY ENDOTHELIAL DYSFUNCTION 7909 05:08:21,360 --> 05:08:23,760 FOLLOWING EXPOSURE TO VARYING 7910 05:08:23,760 --> 05:08:26,200 AMOUNTS OF ISOLATED SICKLE CELLS 7911 05:08:26,200 --> 05:08:30,000 BUT SIMILAR EXPERIMENTS CAN BE 7912 05:08:30,000 --> 05:08:38,440 DONE WITH WHOLE BLOOD AS WELL 7913 05:08:38,440 --> 05:08:40,360 AND THEY WERE STAINED FOR 7914 05:08:40,360 --> 05:08:43,160 DYSFUNCTION AND I RAN DIFFERENT 7915 05:08:43,160 --> 05:08:45,560 VARIABLES INCLUDING 100% SICKLE 7916 05:08:45,560 --> 05:08:54,200 CELLS AND HEALTHY CONTROLS AND 7917 05:08:54,200 --> 05:08:57,040 MIXTURES CONTAINING 5% TO 10% 7918 05:08:57,040 --> 05:09:00,560 SICKLE CELL IN PATIENTS AND WE 7919 05:09:00,560 --> 05:09:02,440 SEE AN EXPRESSION BASED ON THE 7920 05:09:02,440 --> 05:09:04,400 PERCENTAGES OF SICKLE CELLS AND 7921 05:09:04,400 --> 05:09:04,760 SUSPENSION. 7922 05:09:04,760 --> 05:09:07,440 AND THIS IS JUST SOME OF THE 7923 05:09:07,440 --> 05:09:10,240 GRAPH SHOWING THE CUMULATIVE 7924 05:09:10,240 --> 05:09:21,200 DATA OF NORMALIZED INTENSITY FOR 7925 05:09:21,480 --> 05:09:22,000 FORMAL RUNS. 7926 05:09:22,000 --> 05:09:23,800 ONE LAST APPLICATION I'LL SHOW 7927 05:09:23,800 --> 05:09:27,400 YOU GUYS IS SUSPENSION VELOCITY 7928 05:09:27,400 --> 05:09:28,840 TRACKING. 7929 05:09:28,840 --> 05:09:32,480 I-PLOTS CAN HAVE TRACKING 7930 05:09:32,480 --> 05:09:35,480 ALGORITHMS TO CREATE 7931 05:09:35,480 --> 05:09:39,200 MEASUREMENTS AND THE ALGORITHMS 7932 05:09:39,200 --> 05:09:41,560 ADAPT TO VIDEO MICROSCOPY OF 7933 05:09:41,560 --> 05:09:44,680 MORE ADVANCED RESEARCH DEVICES 7934 05:09:44,680 --> 05:09:48,960 SUCH AS THIS DEVICE DESIGNED TO 7935 05:09:48,960 --> 05:09:50,680 DE-OXYGENATE SAMPLES UTILIZED BY 7936 05:09:50,680 --> 05:09:52,920 DAVE WOODS' GROUP YOU'LL HEAR 7937 05:09:52,920 --> 05:09:54,680 ABOUT IN A LITTLE WHILE AND HERE 7938 05:09:54,680 --> 05:09:59,200 YOU CAN SEE THE MEAN AND MAXIMUM 7939 05:09:59,200 --> 05:10:01,120 VELOCITY MEASUREMENT OF 7940 05:10:01,120 --> 05:10:03,760 SUSPENSION AS OXYGEN TENSION IS 7941 05:10:03,760 --> 05:10:09,040 LOWERED FROM 160 TO ZERO. 7942 05:10:09,040 --> 05:10:11,000 OBVIOUSLY I'VE PROVIDED A SMALL 7943 05:10:11,000 --> 05:10:13,360 TASTE OF THE CAPABILITIES OF THE 7944 05:10:13,360 --> 05:10:16,000 MICROFLUIDIC DEVICES AND 7945 05:10:16,000 --> 05:10:16,640 APPLICATIONS WITH-SICKLE CELL 7946 05:10:16,640 --> 05:10:16,840 DISEASE. 7947 05:10:16,840 --> 05:10:18,480 I HOPE IT OFFERS AN IDEA 7948 05:10:18,480 --> 05:10:22,080 PLATFORM FOR THE STUDY OF SICKLE 7949 05:10:22,080 --> 05:10:32,600 CELL DISEASE AND OTHER HEM 7950 05:10:40,240 --> 05:10:40,760 HEMOTOLOGIC AND COMBINING THE 7951 05:10:40,760 --> 05:10:41,760 USES FURTHER ADVANCE THEIR USE 7952 05:10:41,760 --> 05:10:44,200 OUTSIDE THE HYDRO GEL SYSTEM 7953 05:10:44,200 --> 05:10:45,920 THEY'RE EASY TO MAKE AND USE 7954 05:10:45,920 --> 05:10:47,400 PARTICULARLY NOW WITH THE 7955 05:10:47,400 --> 05:10:49,600 ADDITION OF THE DATA ANALYSIS 7956 05:10:49,600 --> 05:10:52,960 TOOLS AND TRANSLATIONAL AND 7957 05:10:52,960 --> 05:10:57,600 ULTIMATELY SOME CLINICAL 7958 05:10:57,600 --> 05:10:59,200 APPLICATIONS WILL BE UTILIZED TO 7959 05:10:59,200 --> 05:11:03,200 TRACK CHANGES PRE AND POST 7960 05:11:03,200 --> 05:11:05,120 PHARMACOLOGIC INTERVENTIONS 7961 05:11:05,120 --> 05:11:05,800 WITHIN THE DEVICES. 7962 05:11:05,800 --> 05:11:07,800 SO OBVIOUSLY I DID NOT DISCUSS 7963 05:11:07,800 --> 05:11:09,760 ALL OF OUR ASSAYS BUT HOPEFULLY 7964 05:11:09,760 --> 05:11:14,400 GAVE YOU A BUFFET OF SOME OF OUR 7965 05:11:14,400 --> 05:11:15,920 EXPERIMENTS AND THE MICROFLUIDIC 7966 05:11:15,920 --> 05:11:17,440 TECHNOLOGIES AND I'D BE HAPPY TO 7967 05:11:17,440 --> 05:11:18,760 ANSWER MORE QUESTIONS VIA THE 7968 05:11:18,760 --> 05:11:21,080 CHAT OR E-MAIL AT A LATER TIME 7969 05:11:21,080 --> 05:11:21,320 AS WELL. 7970 05:11:21,320 --> 05:11:27,000 I'D LIKE TO THANK ALL THE 7971 05:11:27,000 --> 05:11:31,200 MEMBERS OF THE LAB AND FOR THE 7972 05:11:31,200 --> 05:11:32,360 CONTRIBUTIONS TO THE WORK 7973 05:11:32,360 --> 05:11:33,240 PRESENTED HERE. 7974 05:11:33,240 --> 05:11:34,960 >> THANK YOU, CHRISTINA. 7975 05:11:34,960 --> 05:11:38,080 CAN YOU SEE THE QUESTIONS IN THE 7976 05:11:38,080 --> 05:11:39,080 CHAT? 7977 05:11:39,080 --> 05:11:41,280 THERE'S ONE ABOUT WHETHER YOU 7978 05:11:41,280 --> 05:11:44,040 USED ECs FROM PATIENTS WITH 7979 05:11:44,040 --> 05:11:44,560 SICKLE CELL DISEASE FROM 7980 05:11:44,560 --> 05:11:54,760 DR. GUPTA. 7981 05:12:02,280 --> 05:12:06,480 FOR ALL THE EXPERIMENTS THE 7982 05:12:06,480 --> 05:12:09,480 ENDOTHELIAL CELLS ARE UMBILICAL 7983 05:12:09,480 --> 05:12:12,560 VEIN ENDOTHELIAL CELLS SO OUR 7984 05:12:12,560 --> 05:12:15,200 GOAL WAS TO GET A BASELINE WITH 7985 05:12:15,200 --> 05:12:19,160 AN ENDOTHELIAL CELL AVAILABLE 7986 05:12:19,160 --> 05:12:23,360 AND TYPICALLY BEHAVES WELL. 7987 05:12:23,360 --> 05:12:28,360 WE USED TYPES FROM LARGE VESSELS 7988 05:12:28,360 --> 05:12:30,040 SUCH AS HAYEX AND CARDIAC AND 7989 05:12:30,040 --> 05:12:32,440 LUNG AND EPITHELIAL CELLS BUT 7990 05:12:32,440 --> 05:12:35,480 NONE OF THESE HAVE BEEN 7991 05:12:35,480 --> 05:12:37,200 ENDOTHELIAL CELLS FROM SICKLE 7992 05:12:37,200 --> 05:12:38,120 CELL PATIENTS BUT SOMETHING 7993 05:12:38,120 --> 05:12:39,200 WE'RE INTERESTED IN PURSUING IN 7994 05:12:39,200 --> 05:12:44,440 THE FUTURE. 7995 05:12:44,440 --> 05:12:45,720 >> SOUNDS LIKE THE NEXT QUESTION 7996 05:12:45,720 --> 05:12:51,200 WILL BE ADDRESSED BY DR. WOOD IN 7997 05:12:51,200 --> 05:12:56,520 HIS TALK. 7998 05:12:56,520 --> 05:12:59,560 >> ANY RUN DIDN'T MEASURE P 7999 05:12:59,560 --> 05:13:01,440 SELECTINS SINCE IT BINDS AND 8000 05:13:01,440 --> 05:13:02,920 BLOCKING HAS THERAPEUTIC EFFECT? 8001 05:13:02,920 --> 05:13:06,640 FOR THE INITIAL REASON WE DID 8002 05:13:06,640 --> 05:13:09,440 VCAM AND ESELECTIN WAS MORE SO 8003 05:13:09,440 --> 05:13:11,360 THEY WERE TRIED AND TRUE MARKERS 8004 05:13:11,360 --> 05:13:15,320 AND ACTUALLY WE KIND OF WERE 8005 05:13:15,320 --> 05:13:17,240 STARTING THIS BEFORE P SELECTIN 8006 05:13:17,240 --> 05:13:20,520 WAS I THINK BECOMING FAR MORE 8007 05:13:20,520 --> 05:13:21,440 INTERESTING IN THE SICKLE CELL 8008 05:13:21,440 --> 05:13:25,960 WORLD AND WE CAN ONLY REALLY USE 8009 05:13:25,960 --> 05:13:28,360 IT WITHIN THAT PARTICULAR ASSAY 8010 05:13:28,360 --> 05:13:29,920 TO BIOMARKERS AND STAIN FOR TWO 8011 05:13:29,920 --> 05:13:31,640 THINGS AT A TIME BUT WE'RE 8012 05:13:31,640 --> 05:13:34,120 REALLY LOOKING FOR ADDITIONAL 8013 05:13:34,120 --> 05:13:44,680 WAYS AND WE LOOKED INTO RNA SEQ 8014 05:13:46,200 --> 05:13:48,480 TO GET MORE COMPARED TO MARKERS 8015 05:13:48,480 --> 05:13:58,960 OF INFLAMMATION DYSFUNCTION. 8016 05:14:00,800 --> 05:14:03,880 DO I HAVE TIME FOR MORE? 8017 05:14:03,880 --> 05:14:08,440 IN THE HYDRO GEL DOES IT 8018 05:14:08,440 --> 05:14:09,600 DISTEND? 8019 05:14:09,600 --> 05:14:11,040 IT HAS ABILITY TO ADJUST SIMILAR 8020 05:14:11,040 --> 05:14:18,480 TO WHAT WE WOULD EXPECT WITH IN 8021 05:14:18,480 --> 05:14:21,880 VIVO AND WITH ACTUAL BLOOD 8022 05:14:21,880 --> 05:14:22,080 VESSELS. 8023 05:14:22,080 --> 05:14:25,000 OUR SMALLER PDMS-BASED SILICONE 8024 05:14:25,000 --> 05:14:26,440 DEVICES WE DON'T HAVE THE 8025 05:14:26,440 --> 05:14:26,680 ABILITY. 8026 05:14:26,680 --> 05:14:30,120 IT'S A MORE ADVANCED SYSTEM BUT 8027 05:14:30,120 --> 05:14:31,560 NOT WITHOUT ITS CERTAINLY TRICKY 8028 05:14:31,560 --> 05:14:34,360 AND DEFINITELY NEEDS A FAR MORE 8029 05:14:34,360 --> 05:14:37,280 SKILLED USER AND DOESN'T ALLOW 8030 05:14:37,280 --> 05:14:40,400 FOR THAT QUICK AND DIRTY 8031 05:14:40,400 --> 05:14:41,640 MICROFLUIDIC EXPERIMENT AS WITH 8032 05:14:41,640 --> 05:14:42,000 OTHERS. 8033 05:14:42,000 --> 05:14:42,800 YES, THAT IS ONE OF THE GREAT 8034 05:14:42,800 --> 05:14:51,800 THINGS ABOUT THAT SYSTEM. 8035 05:14:51,800 --> 05:14:56,480 >> AND THE QUESTION ABOUT LARGE 8036 05:14:56,480 --> 05:14:58,400 VESSEL EVs FOR ADHESION. 8037 05:14:58,400 --> 05:15:02,480 >> I HAVEN'T -- IT'S BEEN A 8038 05:15:02,480 --> 05:15:05,040 MINUTE SINCE I'VE DONE WORK AND 8039 05:15:05,040 --> 05:15:14,360 WE HAVE AN AORTIC ENDOTHELIAL 8040 05:15:14,360 --> 05:15:19,040 CELLS AND LOOKED AT DYSFUNCTION 8041 05:15:19,040 --> 05:15:22,040 WITH ESELECTIN AND HADN'T LOOKED 8042 05:15:22,040 --> 05:15:25,240 AT ADHESION WITHIN THOSE SYSTEMS 8043 05:15:25,240 --> 05:15:27,680 AS WELL AS LOOKING AT THE 8044 05:15:27,680 --> 05:15:28,480 ENDOTHELIAL CELLS AND SOMETHING 8045 05:15:28,480 --> 05:15:30,960 WE HOPE TO LOOK FOR IN THE 8046 05:15:30,960 --> 05:15:31,200 FUTURE. 8047 05:15:31,200 --> 05:15:32,960 >> THANK YOU. 8048 05:15:32,960 --> 05:15:36,920 THE OTHERS WERE JUST COMPLIMENTS 8049 05:15:36,920 --> 05:15:38,320 YOU CAN SEE LATER. 8050 05:15:38,320 --> 05:15:38,760 >> THANK YOU. 8051 05:15:38,760 --> 05:15:42,160 AND I'M HAPPY TO INTRODUCE 8052 05:15:42,160 --> 05:15:43,360 ANOTHER EMORY COLLEAGUE 8053 05:15:43,360 --> 05:15:46,400 DR. ROBACK FOR OUR NEXT TALK SO 8054 05:15:46,400 --> 05:15:51,840 THANK YOU ALL AGAIN. 8055 05:15:51,840 --> 05:15:53,040 >> GREAT. 8056 05:15:53,040 --> 05:15:56,320 THANK YOU. 8057 05:15:56,320 --> 05:15:58,080 I'LL TRY TO SHARE MY SCREEN. 8058 05:15:58,080 --> 05:16:00,720 CAN YOU SEE MY SCREEN? 8059 05:16:00,720 --> 05:16:01,280 >> 8060 05:16:01,280 --> 05:16:03,200 >> YES, LOOKS GOOD. 8061 05:16:03,200 --> 05:16:04,360 >> GOOD. 8062 05:16:04,360 --> 05:16:14,880 I'LL GO TO PRESENTATION MODE. 8063 05:16:16,440 --> 05:16:17,080 OKAY. 8064 05:16:17,080 --> 05:16:19,320 FIRST I'D LIKE TO THANK VIVIEN 8065 05:16:19,320 --> 05:16:21,800 AND THE ORGANIZERS FOR GIVING ME 8066 05:16:21,800 --> 05:16:23,000 THE OPPORTUNITY TO PRESENT HERE. 8067 05:16:23,000 --> 05:16:26,440 THE WORK I'M GOING TO BE TALKING 8068 05:16:26,440 --> 05:16:31,880 ABOUT TODAY WAS DONE IN 8069 05:16:31,880 --> 05:16:34,360 COLLABORATION WITH JOHNS 8070 05:16:34,360 --> 05:16:34,600 HOPKINS. 8071 05:16:34,600 --> 05:16:36,920 I HAVE NO DISCLOSURES TO MAKE 8072 05:16:36,920 --> 05:16:37,520 RELEVANT TO THESE PARTICULAR 8073 05:16:37,520 --> 05:16:41,520 STUDIES. 8074 05:16:41,520 --> 05:16:45,400 SO WHEN YOU LOOK AT THE TYPICAL 8075 05:16:45,400 --> 05:16:48,280 PATIENTS THAT WE TRANSFUSE, YOU 8076 05:16:48,280 --> 05:16:50,400 CAN DIVIDE THOSE PATIENTS A FEW 8077 05:16:50,400 --> 05:16:53,080 DIFFERENT WAYS BASED ON WHETHER 8078 05:16:53,080 --> 05:16:55,560 THEY HAVE ACUTE RED CELL NEEDS 8079 05:16:55,560 --> 05:16:58,440 OR CHRONIC TRANSFUSION NEEDS AND 8080 05:16:58,440 --> 05:17:01,040 WHETHER THEY CAN BE SERVED 8081 05:17:01,040 --> 05:17:04,000 APPROPRIATELY WITH ROUTINE 8082 05:17:04,000 --> 05:17:05,360 MATCHES OR WHETHER THEY REQUIRE 8083 05:17:05,360 --> 05:17:07,520 COMPLEX MATCHING ALGORITHMS TO 8084 05:17:07,520 --> 05:17:09,360 GET THE MOST COMPATIBLE BLOOD. 8085 05:17:09,360 --> 05:17:11,560 THE MORE COMPLEX PATIENTS ARE 8086 05:17:11,560 --> 05:17:14,240 SHOWN HERE WITH THE GRAY 8087 05:17:14,240 --> 05:17:16,160 BACKGROUND BUT AMONG THOSE, 8088 05:17:16,160 --> 05:17:18,160 SICKLE CELL PATIENTS ARE 8089 05:17:18,160 --> 05:17:18,840 PROBABLY SOME OF THE MOST 8090 05:17:18,840 --> 05:17:22,440 COMPLEX PATIENTS WE MANAGE IN 8091 05:17:22,440 --> 05:17:24,800 THE BLOOD BANK IN TERMS OF 8092 05:17:24,800 --> 05:17:25,920 PROVIDING RED CELLS FOR 8093 05:17:25,920 --> 05:17:27,520 TRANSFUSION BECAUSE OF THEIR 8094 05:17:27,520 --> 05:17:32,040 SIGNIFICANT PROPENSITY TO MAKE 8095 05:17:32,040 --> 05:17:38,480 RED CELL ALLO ANTIBODIES WHEN 8096 05:17:38,480 --> 05:17:39,200 TRANSFUSED AND THEY'RE 8097 05:17:39,200 --> 05:17:41,120 TRANSFUSION NEEDS MAY BE BETTER 8098 05:17:41,120 --> 05:17:44,640 SUPPORTED BY NOVEL CULTURED RED 8099 05:17:44,640 --> 05:17:51,240 CELL PRODUCTS WHICH COULD ONE, 8100 05:17:51,240 --> 05:17:55,280 PREVENT ALLO IMMUNIZATION AND 8101 05:17:55,280 --> 05:17:57,800 COULD ALLOW YOU TO MAKE RED 8102 05:17:57,800 --> 05:17:59,800 CELLS AVAILABLE FASTER BECAUSE 8103 05:17:59,800 --> 05:18:00,640 SOMETIMES IT CAN TAKE LONGER 8104 05:18:00,640 --> 05:18:02,760 DAYS OR LONGER TO FIND 8105 05:18:02,760 --> 05:18:06,040 COMPATIBLE PATIENTS FOR A 8106 05:18:06,040 --> 05:18:10,480 PATIENT HEAVILY ALLO IMMUNIZED 8107 05:18:10,480 --> 05:18:13,480 AND CAN PREVENT REACTION IN 8108 05:18:13,480 --> 05:18:16,480 PREVIOUSLY ALLO IMMUNIZED 8109 05:18:16,480 --> 05:18:26,640 PATIENTS. 8110 05:18:31,840 --> 05:18:34,400 AND THERE'S THREE APPROACHES 8111 05:18:34,400 --> 05:18:41,880 USEFUL FOR TRANSFUSION. 8112 05:18:41,880 --> 05:18:48,400 SO THE FIRST APPROACH IS TO 8113 05:18:48,400 --> 05:18:55,360 TAKE PRIMARY CD34 STEM CELLS AND 8114 05:18:55,360 --> 05:18:58,440 STIMULATE THEM TO DIFFERENTIATE 8115 05:18:58,440 --> 05:19:01,760 INTO ERYTHROBLASTS AND 8116 05:19:01,760 --> 05:19:08,480 PROLIFERATE BUT THE PRIMARY 8117 05:19:08,480 --> 05:19:10,440 ERYTHROBLASTS HAVE LIMITED 8118 05:19:10,440 --> 05:19:12,680 SELF-RENEWAL PROPERTIES AND AT A 8119 05:19:12,680 --> 05:19:16,440 POINT CHANGE THE CULTURE MILIEU 8120 05:19:16,440 --> 05:19:18,560 TO DIFFERENTIATE INTO MATURE RED 8121 05:19:18,560 --> 05:19:18,760 CELLS. 8122 05:19:18,760 --> 05:19:21,480 MOST ARE PROBABLY AWARE OF A 8123 05:19:21,480 --> 05:19:23,080 PAPER PUBLISHED ABOUT 11 YEARS 8124 05:19:23,080 --> 05:19:28,440 AGO IN BLOOD WHERE THIS WAS DONE 8125 05:19:28,440 --> 05:19:35,120 AND THE RESULTING ERYTHROCYTES 8126 05:19:35,120 --> 05:19:37,560 WERE TRANSFUSED AND THE 8127 05:19:37,560 --> 05:19:38,280 PERSISTENCE WAS MONITORED AS 8128 05:19:38,280 --> 05:19:45,440 WELL AS OTHER OUTCOMES. 8129 05:19:45,440 --> 05:19:47,800 THE PROBLEM IS IT'S A FAIRLY 8130 05:19:47,800 --> 05:19:50,120 INEFFICIENT APPROACH AND LED TO 8131 05:19:50,120 --> 05:19:52,280 ALTERNATIVE WAYS TO CREATE 8132 05:19:52,280 --> 05:19:55,280 CULTURES THAT COULD MUCH MORE 8133 05:19:55,280 --> 05:19:56,400 EFFICIENTLY PRODUCE LARGE 8134 05:19:56,400 --> 05:19:59,280 NUMBERS OF ETHERCYTES FOR 8135 05:19:59,280 --> 05:19:59,880 TRANSFUSION. 8136 05:19:59,880 --> 05:20:02,840 I'M SHOWING ONE REFERENCE HERE 8137 05:20:02,840 --> 05:20:05,080 FROM A GROUP THOUGH THERE'S 8138 05:20:05,080 --> 05:20:06,480 DOZENS OF REFERENCES IN THE 8139 05:20:06,480 --> 05:20:07,160 LITERATURE AND ESSENTIALLY 8140 05:20:07,160 --> 05:20:12,960 ANOTHER WAY TO DO THIS IS TO 8141 05:20:12,960 --> 05:20:18,360 TAKE CD34 POSITIVE CELLS OR 8142 05:20:18,360 --> 05:20:24,760 ERYTHROBLASTS AND CAUSE THEM TO 8143 05:20:24,760 --> 05:20:26,960 DEDIFFERENTIATE TO PROLIFERATE 8144 05:20:26,960 --> 05:20:31,640 EXTENSIVELY AND CAN BE 8145 05:20:31,640 --> 05:20:33,880 STIMULATED TO RESUME 8146 05:20:33,880 --> 05:20:36,840 DIFFERENTIATION OF ERYTHROBLASTS 8147 05:20:36,840 --> 05:20:42,200 AND MATURE CELLS AND SO I CAN 8148 05:20:42,200 --> 05:20:46,000 COMPARE AND CONTRAST I'M USING 8149 05:20:46,000 --> 05:20:49,600 THIS VERY SIMPLE DIFFERENTIATION 8150 05:20:49,600 --> 05:20:53,200 SCHEMATIC FROM PLURIPOTENT STEM 8151 05:20:53,200 --> 05:20:58,600 CELLS INTO RETICULOCYTES AND 8152 05:20:58,600 --> 05:21:04,280 STEM CELLS AND THE WAY I SEE THE 8153 05:21:04,280 --> 05:21:07,240 APPROACH THE WAY LIN GAO'S GROUP 8154 05:21:07,240 --> 05:21:13,200 HAS DONE IT IS TAKE PERIPHERAL 8155 05:21:13,200 --> 05:21:15,160 BLOOD SAMPLES AND DIFFERENTIATE 8156 05:21:15,160 --> 05:21:19,240 INTO ERYTHROBLASTS ONCE WE HAVE 8157 05:21:19,240 --> 05:21:20,520 PRIMARILY ERYTHROBLASTS IN 8158 05:21:20,520 --> 05:21:23,200 CULTURE WE NUCLEOAFFECT THE 8159 05:21:23,200 --> 05:21:27,480 CELLS WITH THE OTHER FACTORS TO 8160 05:21:27,480 --> 05:21:31,000 STIMULATE THE CELLS TO 8161 05:21:31,000 --> 05:21:32,800 DEDIFFERENTIATE INTO PLURISTEM 8162 05:21:32,800 --> 05:21:35,120 CELLS TO PROLIFERATE EXTENSIVELY 8163 05:21:35,120 --> 05:21:37,040 AND WE CAN LATER CHANGE THE 8164 05:21:37,040 --> 05:21:40,080 CULTURE CONDITIONS TO STIMULATE 8165 05:21:40,080 --> 05:21:42,000 THEM TO DIFFERENTIATE INTO RED 8166 05:21:42,000 --> 05:21:42,200 CELLS. 8167 05:21:42,200 --> 05:21:45,800 THIS APPROACH KIND OF WORKS BUT 8168 05:21:45,800 --> 05:21:52,960 AT LEAST IN OUR HANDS AND IN LIN 8169 05:21:52,960 --> 05:21:54,360 GAO'S HANDS WASN'T THAT 8170 05:21:54,360 --> 05:21:55,000 EFFICIENT HERE'S A COMBINATION 8171 05:21:55,000 --> 05:21:58,480 OF UNPUBLISHED WORK IN OUR LAB 8172 05:21:58,480 --> 05:22:05,480 AND PUBLISHED WORK FROM LIN G 8173 05:22:05,480 --> 05:22:07,680 GAA'S CELL AND YOU CAN SEE THAT 8174 05:22:07,680 --> 05:22:11,720 YOU START TO GET INCREASED 8175 05:22:11,720 --> 05:22:19,240 EXPRESSION OF CD235A ON THE 8176 05:22:19,240 --> 05:22:29,800 CELLS AND FEW ARE ENUCLEATE. 8177 05:22:52,560 --> 05:22:54,840 YOU CAN MAKE A LOT OF CELLS 8178 05:22:54,840 --> 05:22:57,960 USING THIS APPROACH BUT NOT A 8179 05:22:57,960 --> 05:22:59,160 GREAT WAY TO CREATE MATURE RED 8180 05:22:59,160 --> 05:23:07,240 CELLS THAT CAN BE USED FOR 8181 05:23:07,240 --> 05:23:12,680 TRANSFUSION. 8182 05:23:12,680 --> 05:23:16,400 AND THERE WAS A SEARCH FOR A 8183 05:23:16,400 --> 05:23:20,600 GOLDILOCKS GENE THAT CAN ALOUSE 8184 05:23:20,600 --> 05:23:23,400 THEM TO PROLIFERATE MUCH MORE 8185 05:23:23,400 --> 05:23:25,920 EXTENSIVELY THAN THEY OTHERWISE 8186 05:23:25,920 --> 05:23:26,320 WOULD. 8187 05:23:26,320 --> 05:23:28,520 FOR EXAMPLE, IN THE PRIMARY CELL 8188 05:23:28,520 --> 05:23:31,120 CULTURE EXAMPLE ALLOW THEM TO 8189 05:23:31,120 --> 05:23:32,440 PROLIFERATE MUCH MORE 8190 05:23:32,440 --> 05:23:33,400 EXTENSIVELY THAN NORMAL BUT 8191 05:23:33,400 --> 05:23:35,640 STILL ALLOWS THEM TO RELATIVELY 8192 05:23:35,640 --> 05:23:39,960 EFFICIENTLY BE DIFFERENTIATED 8193 05:23:39,960 --> 05:23:41,840 INTO MATURE ERYTHROCYTES. 8194 05:23:41,840 --> 05:23:44,880 AND TO COMPARE AND CONTRAST THAT 8195 05:23:44,880 --> 05:23:47,600 WITH THE IPSC APPROACH WHICH IS 8196 05:23:47,600 --> 05:23:50,080 IN GRAY I SHOWED A COUPLE SLIDES 8197 05:23:50,080 --> 05:23:52,520 AGO AND WHAT YOU LOOK AT IS 8198 05:23:52,520 --> 05:23:54,920 TAKING ERYTHROBLASTS IN THE SAME 8199 05:23:54,920 --> 05:23:57,440 CULTURES AND THEN INTRODUCING A 8200 05:23:57,440 --> 05:23:59,360 GENE THAT CAUSES THE 8201 05:23:59,360 --> 05:24:01,240 ERYTHROBLASTS TO CONTINUE 8202 05:24:01,240 --> 05:24:04,520 PROLIFERATE EXTENSIVELY AND WE 8203 05:24:04,520 --> 05:24:09,440 CALL THESE EXTENSIVELY EXPANDING 8204 05:24:09,440 --> 05:24:12,000 ERYTHROBLASTS AND STIMULATING 8205 05:24:12,000 --> 05:24:15,160 THEM TO DIFFERENTIATE INTO 8206 05:24:15,160 --> 05:24:16,480 RETICULOCYTES AND MATURE RED 8207 05:24:16,480 --> 05:24:16,760 CELLS. 8208 05:24:16,760 --> 05:24:20,560 WHAT I'LL TALK ABOUT IS THE 8209 05:24:20,560 --> 05:24:23,000 INTRODUCTION OF BMI-1 IN THE 8210 05:24:23,000 --> 05:24:23,200 CELLS. 8211 05:24:23,200 --> 05:24:25,480 MUCH OF THE WORK I'LL BE SHOWING 8212 05:24:25,480 --> 05:24:31,080 YOU WAS PUBLISHED LAST YEAR AND 8213 05:24:31,080 --> 05:24:39,240 LOU ET AL. MOLECULAR THERAPY AND 8214 05:24:39,240 --> 05:24:40,920 THERE WAS A MOUSE MODEL WHERE 8215 05:24:40,920 --> 05:24:46,520 THEY INTRODUCED BMI-1 INTO 8216 05:24:46,520 --> 05:24:50,960 ERYTHROBLASTS IN A MOUSE MODEL. 8217 05:24:50,960 --> 05:24:53,680 JUST TO GIVE A SMALL BACKGROUND 8218 05:24:53,680 --> 05:25:02,000 ON BMI-1, IT'S ALSO KNOWN AS 8219 05:25:02,000 --> 05:25:09,720 PCGF4 PART OF THE POLY CHROME 8220 05:25:09,720 --> 05:25:14,280 REPRESSIVE ORIGINALLY FOUND IN 8221 05:25:14,280 --> 05:25:18,320 DROSOPHILA ESC AND CAN 8222 05:25:18,320 --> 05:25:20,720 UBIQUINATE AND LEAD TO ITS 8223 05:25:20,720 --> 05:25:25,800 DEGRADATION WHICH THEN LEADS TO 8224 05:25:25,800 --> 05:25:31,240 AFFECTS ON TRANSCRIPTION AND BMI 8225 05:25:31,240 --> 05:25:36,120 KNOCKOUT HAS BEEN DONE AND YOU 8226 05:25:36,120 --> 05:25:38,880 GET A HYPER CELLULAR MARROW AND 8227 05:25:38,880 --> 05:25:40,560 THEY HAVE LIMITED REPOPULATING 8228 05:25:40,560 --> 05:25:42,400 ACTIVITY AND THIS FIGURE WAS 8229 05:25:42,400 --> 05:25:46,560 TAKEN FROM A REVIEW ARTICLE A 8230 05:25:46,560 --> 05:25:50,120 FEW YEARS AGO. 8231 05:25:50,120 --> 05:25:53,360 IN ORDER TO INVESTIGATE WHETHER 8232 05:25:53,360 --> 05:25:56,200 BMI-1 TO WHAT EXTENT BMI-1 PLAYS 8233 05:25:56,200 --> 05:26:02,640 A ROLE IN HUMAN ERYTHROBLASTS 8234 05:26:02,640 --> 05:26:03,080 PROLIFERATION AND 8235 05:26:03,080 --> 05:26:04,520 DIFFERENTIATION AND WHETHER 8236 05:26:04,520 --> 05:26:08,320 THERE MAY BE A GOLDILOCKS GENE 8237 05:26:08,320 --> 05:26:10,640 LIN GAO TALKED ABOUT WE USED THE 8238 05:26:10,640 --> 05:26:12,880 FOLLOWING CULTURE SYSTEM AND 8239 05:26:12,880 --> 05:26:13,920 HUMAN PERIPHERAL BLOOD WAS 8240 05:26:13,920 --> 05:26:19,360 COLLECTED FROM VOLUNTEER DONORS 8241 05:26:19,360 --> 05:26:24,440 AND THE PERIPHERAL BLOOD WAS 8242 05:26:24,440 --> 05:26:28,040 SUBJECT TO A FIGHT CALLED TO 8243 05:26:28,040 --> 05:26:31,280 ISOLATE PBMCs AND THEY WERE 8244 05:26:31,280 --> 05:26:34,520 PLACED IN ERYTHROBLAST EXPANSION 8245 05:26:34,520 --> 05:26:39,520 MEDIUM WHICH WAS SFPM PLUS THE 8246 05:26:39,520 --> 05:26:42,480 FACTOR AND IL3 AND IGF1 AND 8247 05:26:42,480 --> 05:26:43,800 LOOKING AT CELL NUMBERS YOU SEE 8248 05:26:43,800 --> 05:26:46,560 THE FIRST FIVE DAYS YOU GET A 8249 05:26:46,560 --> 05:26:48,160 DECLINE IN CELL NUMBERS IN THE 8250 05:26:48,160 --> 05:26:51,240 CULTURES THEN YOU GET A REBOUND 8251 05:26:51,240 --> 05:26:57,000 SO BY ABOUT DAY EIGHT YOU RETURN 8252 05:26:57,000 --> 05:26:59,240 TO THE STARTING NUMBER AND SEE 8253 05:26:59,240 --> 05:27:00,520 PROLIFERATION OF THE CELLS OVER 8254 05:27:00,520 --> 05:27:02,880 THE ENSUING WEEK OR 10 DAYS. 8255 05:27:02,880 --> 05:27:04,280 THIS IS TWO DIFFERENT BLOOD 8256 05:27:04,280 --> 05:27:05,880 SAMPLES FROM TWO DIFFERENT 8257 05:27:05,880 --> 05:27:07,120 DONORS. 8258 05:27:07,120 --> 05:27:08,880 BOTH FOLLOWING THE SAME KINETICS 8259 05:27:08,880 --> 05:27:10,520 AND AFTER DAY 16 YOU GET A 8260 05:27:10,520 --> 05:27:13,320 PLATEAU AND DECLINE. 8261 05:27:13,320 --> 05:27:16,080 LOOKING AT JUST TWO TIME POINTS, 8262 05:27:16,080 --> 05:27:17,880 DAY 12 AND DAY 32, BOTH OF WHICH 8263 05:27:17,880 --> 05:27:20,600 HAVE SIMILAR CELL NUMBERS IN THE 8264 05:27:20,600 --> 05:27:22,760 CULTURES, YOU CAN SEE AT DAY 12 8265 05:27:22,760 --> 05:27:25,720 THEY'RE LARGER PLASTIC LOOKING 8266 05:27:25,720 --> 05:27:27,960 CELLS AND THEY LOOK 8267 05:27:27,960 --> 05:27:30,200 SIGNIFICANTLY MORE HEALTHY THAN 8268 05:27:30,200 --> 05:27:31,600 THESE CELLS WHERE THEY HAVE WHAT 8269 05:27:31,600 --> 05:27:35,440 LOOKS LIKE DEAD AND DYING CELLS. 8270 05:27:35,440 --> 05:27:39,240 IF YOU DO FLOW IMMUNOPHENOTYPING 8271 05:27:39,240 --> 05:27:46,520 USING ALPHA 4 INTEGRIN AND ALSO 8272 05:27:46,520 --> 05:27:48,600 BAN 3, VERY COMMONLY USED 8273 05:27:48,600 --> 05:27:50,920 COMBINATION OF ANTIBODIES TO 8274 05:27:50,920 --> 05:28:01,440 LOOK AT THESE MOSTLY BLASTS AND 8275 05:28:13,400 --> 05:28:19,520 BY THE TIME YOU GET TO DAY 32 8276 05:28:19,520 --> 05:28:29,400 NOW YOU HAVE MORE CELLS AND YOU 8277 05:28:29,400 --> 05:28:39,840 GET MORE ERYTHYROID CELLS. 8278 05:28:40,200 --> 05:28:45,280 AT DAY 12 WHEN YOU PUT IN EDU 8279 05:28:45,280 --> 05:28:48,440 DOING A FALSE CHASE EXPERIMENT 8280 05:28:48,440 --> 05:28:51,240 YOU SEE A LARGE NUMBER OF THE 8281 05:28:51,240 --> 05:28:52,800 CELLS INCORPORATED THE ANALOG 8282 05:28:52,800 --> 05:28:54,520 INTO THEIR DNA. 8283 05:28:54,520 --> 05:28:59,960 COMPARE THAT WITH THE NUCLEI AND 8284 05:28:59,960 --> 05:29:02,400 BY DAY TWO THERE'S LESS 8285 05:29:02,400 --> 05:29:03,480 INCORPORATION OF THE ANALOG. 8286 05:29:03,480 --> 05:29:08,720 THIS IS QUANTIFIED OVER HERE AND 8287 05:29:08,720 --> 05:29:10,680 IF YOU LOOK AT AND BY DAY 32 8288 05:29:10,680 --> 05:29:15,240 OVER A THIRD OF THE CELLS ARE 8289 05:29:15,240 --> 05:29:25,640 EITHER DEAD OR DYING. 8290 05:29:31,000 --> 05:29:32,160 SO THE NEXT INVESTIGATIONS 8291 05:29:32,160 --> 05:29:37,680 LOOKED AT WHAT KIND OF A ROLE 8292 05:29:37,680 --> 05:29:41,440 MIGHT BMI-1 PLAY IN ERYTHROBLAST 8293 05:29:41,440 --> 05:29:42,800 EXPANSION? 8294 05:29:42,800 --> 05:29:45,440 USING THE SAME CULTURES I SHOWED 8295 05:29:45,440 --> 05:29:48,120 ON THE PREVIOUS SLIDE, BMI-1 8296 05:29:48,120 --> 05:29:52,520 MESSENGER RNA WAS QUANTIFIED BY 8297 05:29:52,520 --> 05:29:55,120 QUANTITATIVE RTPCR AND SEE 8298 05:29:55,120 --> 05:29:58,160 RELATIVELY HIGH LEVELS ON DAY 8 8299 05:29:58,160 --> 05:30:00,400 AND DAY 16 AND PROGRESSIVELY 8300 05:30:00,400 --> 05:30:04,800 DECLINING LEVELS TO HALF THE 8301 05:30:04,800 --> 05:30:06,760 STARTING LEVEL OR DAY 8 LEVEL BY 8302 05:30:06,760 --> 05:30:08,800 32 DAYS IN CULTURE. 8303 05:30:08,800 --> 05:30:10,800 FROM A KINETIC PERSPECTIVE THE 8304 05:30:10,800 --> 05:30:13,800 DECLINE IN BMI-1 COULD BE 8305 05:30:13,800 --> 05:30:16,520 CONSISTENT WITH A REGULATOR 8306 05:30:16,520 --> 05:30:17,680 THAT'S EXPRESSED AT HIGHER 8307 05:30:17,680 --> 05:30:19,240 LEVELS EARLY ON WHILE THE CELLS 8308 05:30:19,240 --> 05:30:21,880 ARE PROLIFERATING AND THEN 8309 05:30:21,880 --> 05:30:22,640 TURNED OFF AS THE CELLS ARE 8310 05:30:22,640 --> 05:30:28,200 DIFFERENTIATING. 8311 05:30:28,200 --> 05:30:30,880 TO LOOK AT WHAT POTENTIAL ROLE 8312 05:30:30,880 --> 05:30:34,520 BMI-1 MIGHT PLAY, TWO DIFFERENT 8313 05:30:34,520 --> 05:30:37,320 KNOCK-DOWN VECTORS WERE 8314 05:30:37,320 --> 05:30:37,600 PRODUCED. 8315 05:30:37,600 --> 05:30:40,560 THESE ARE VECTORS THAT PRODUCE A 8316 05:30:40,560 --> 05:30:42,200 SHORT RNA SEGMENT. 8317 05:30:42,200 --> 05:30:46,080 ONE TARGETING THIS PARTICULAR 8318 05:30:46,080 --> 05:30:47,840 AXON HERE IN THE CODING REGION 8319 05:30:47,840 --> 05:30:51,360 AND THE OTHER TARGETING THE 8320 05:30:51,360 --> 05:30:52,760 THREE PRIME UNTRANSLATED IN 8321 05:30:52,760 --> 05:30:55,200 BMI-1. 8322 05:30:55,200 --> 05:31:03,520 YOU CAN SEE DOWN HERE IS AGAINST 8323 05:31:03,520 --> 05:31:04,320 THE KNOCKOUT VECTOR AND THE 8324 05:31:04,320 --> 05:31:06,640 LEVEL YOU SEE IN CULTURES HIT 8325 05:31:06,640 --> 05:31:09,000 WITH THIS VECTOR, WHEN YOU 8326 05:31:09,000 --> 05:31:11,240 TRANSDUCE CELLS WITH EITHER OF 8327 05:31:11,240 --> 05:31:13,640 THESE OTHER TWO VECTORS ONE 8328 05:31:13,640 --> 05:31:14,920 TARGETING THE AXON AND ONE 8329 05:31:14,920 --> 05:31:19,240 TARGETING THE TRANSLATOR REGION, 8330 05:31:19,240 --> 05:31:23,040 YOU CAN GET APPRECIABLE KNOCKOUT 8331 05:31:23,040 --> 05:31:24,480 OF BMI-1 EXPRESSION. 8332 05:31:24,480 --> 05:31:26,960 WHAT'S INTERESTING IS IF YOU 8333 05:31:26,960 --> 05:31:28,520 LOOK AT PROLIFERATIVE CAPABILITY 8334 05:31:28,520 --> 05:31:31,240 OF THE CULTURES, WHEN YOU LOOK 8335 05:31:31,240 --> 05:31:34,480 AT THE CONTROL VECTOR HERE 8336 05:31:34,480 --> 05:31:36,960 TARGETING GFP IS IN BLUE AND YOU 8337 05:31:36,960 --> 05:31:41,240 GET ESSENTIALLY THE NORMAL 8338 05:31:41,240 --> 05:31:43,720 PROLIFERATIVE CURVE WE SEE 8339 05:31:43,720 --> 05:31:45,800 DIVISIONS OR PROLIFERATION FOR 8340 05:31:45,800 --> 05:31:48,320 ABOUT 10 OR 12 DAYS AND THEN A 8341 05:31:48,320 --> 05:31:50,360 PLATEAU AND SLIGHT DECLINE. 8342 05:31:50,360 --> 05:31:52,800 IF YOU TRANSDUCE THE CELLS WITH 8343 05:31:52,800 --> 05:31:55,320 EITHER ONE OF THESE KNOCKOUT 8344 05:31:55,320 --> 05:32:05,520 VECTORS YOU GET A SIGNIFICANT 8345 05:32:05,520 --> 05:32:16,080 PROLIFERATIVE CAPACITY AND THE 8346 05:32:19,680 --> 05:32:29,120 AND NOW JUST TO CONFIRM WE DID A 8347 05:32:29,120 --> 05:32:30,440 RESCUE EXPERIMENT ONCE AGAIN 8348 05:32:30,440 --> 05:32:36,200 USING THE SAME RETROVIRUSES BUT 8349 05:32:36,200 --> 05:32:40,520 THEN IN ADDITION CODE 8350 05:32:40,520 --> 05:32:44,560 TRANSDUCING WITH THE KNOCKOUT 8351 05:32:44,560 --> 05:32:47,120 VECTORS A RETROVIRAL VECTOR THAT 8352 05:32:47,120 --> 05:32:55,720 EXPRESSES A BMI-1 TRANS GENE. 8353 05:32:55,720 --> 05:32:59,720 AND THIS DOES NOT INCLUDE THE 8354 05:32:59,720 --> 05:33:03,000 THREE PRIME TRANSLATER REGIONS. 8355 05:33:03,000 --> 05:33:04,640 IT WOULD ONLY BE THIS KNOCKOUT 8356 05:33:04,640 --> 05:33:08,240 VECTOR WHICH TARGETS THE AXON. 8357 05:33:08,240 --> 05:33:10,880 ONLY THIS KNOCKOUT VECTOR WOULD 8358 05:33:10,880 --> 05:33:12,280 TARGET THIS RESCUE TRANS GENE 8359 05:33:12,280 --> 05:33:14,560 BUT NOT THE ONCE TRANSLATED 8360 05:33:14,560 --> 05:33:15,120 REGION VECTOR. 8361 05:33:15,120 --> 05:33:19,840 WHAT YOU CAN SEE HERE IS THAT 8362 05:33:19,840 --> 05:33:23,080 WHEN YOU CODE TRANSDUCE THE 8363 05:33:23,080 --> 05:33:26,040 KNOCKOUT VECTOR TARGETING THIS 8364 05:33:26,040 --> 05:33:29,880 AREA OF THE VARIOUS WITH THE 8365 05:33:29,880 --> 05:33:31,200 BMI-1 TRANS GENE THERE'S NO 8366 05:33:31,200 --> 05:33:34,000 IMPACT ON PROLIFERATION BECAUSE 8367 05:33:34,000 --> 05:33:36,600 THE KNOCKOUT VECTOR IS TARGETING 8368 05:33:36,600 --> 05:33:39,040 BOTH THE INDIGENOUS BMI-1 8369 05:33:39,040 --> 05:33:43,240 TRANSCRIPT AND THE TRANSCRIPT 8370 05:33:43,240 --> 05:33:48,680 COMING FROM THIS LENGTHY VIRAL 8371 05:33:48,680 --> 05:33:49,280 VECTOR. 8372 05:33:49,280 --> 05:33:54,960 BUT THE KNOCKOUT VECTOR 8373 05:33:54,960 --> 05:33:56,360 TARGETING THE REGION TRANSDUCING 8374 05:33:56,360 --> 05:34:00,360 THAT WITH THE TRANS GENE THEN 8375 05:34:00,360 --> 05:34:02,160 YOU GET A RETURN TO NORMAL 8376 05:34:02,160 --> 05:34:03,280 ACTIVITY BECAUSE THE TRANS GENE 8377 05:34:03,280 --> 05:34:09,800 IS NOT GET --TARGETED BY THE 8378 05:34:09,800 --> 05:34:11,160 VECTOR AND IT'S PROMISING BMI-1 8379 05:34:11,160 --> 05:34:14,840 COULD BE A GENE THAT HAS THE 8380 05:34:14,840 --> 05:34:16,520 CHARACTERISTICS WE'RE LOOKING 8381 05:34:16,520 --> 05:34:23,320 FOR AS A WAY TO PROLONG AND 8382 05:34:23,320 --> 05:34:27,240 ALLOW THE CELLS TO DIFFERENTIATE 8383 05:34:27,240 --> 05:34:28,920 INTO MATURE RED CELLS. 8384 05:34:28,920 --> 05:34:33,000 WHAT I'M SHOWING HERE THEN ARE 8385 05:34:33,000 --> 05:34:38,080 STUDIES TO OVER EXPRESS BMI-1 IN 8386 05:34:38,080 --> 05:34:40,520 THE SAME ERYTHROBLAST CULTURES. 8387 05:34:40,520 --> 05:34:44,440 THIS IS A SCHEMATIC OF THE 8388 05:34:44,440 --> 05:34:48,920 CULTURE SYSTEM. 8389 05:34:48,920 --> 05:34:55,120 I TOLD YOU THISSERYY 8390 05:34:56,280 --> 05:34:56,280 WE 8391 05:34:58,600 --> 05:35:04,880 WE CULTURED THEM FOR EIGHT DAYS 8392 05:35:04,880 --> 05:35:15,400 AND THEN WE GREW THE CELLS AT 8393 05:35:18,480 --> 05:35:20,200 LEAST 60 DAYS IN CULTURE. 8394 05:35:20,200 --> 05:35:30,720 THESE ARE THEN THE EXTENSIVELY 8395 05:35:31,320 --> 05:35:39,000 EXPANDING ERYTHROID CELLS AND WE 8396 05:35:39,000 --> 05:35:43,360 HAD IMDM AND WHAT YOU CAN SEE 8397 05:35:43,360 --> 05:35:47,480 HERE IS THAT THE BMI EXPRESSION 8398 05:35:47,480 --> 05:35:56,680 VECTOR LED TO MARKEDLY NOTED 8399 05:35:56,680 --> 05:35:59,240 LEVELS AND LOOKING AT PERIPHERAL 8400 05:35:59,240 --> 05:36:06,480 BLOOD FROM P152 AND P154 8401 05:36:06,480 --> 05:36:08,320 COMPARED TO THE P152 8402 05:36:08,320 --> 05:36:12,680 ERYTHROBLASTS WHERE WE USED THE 8403 05:36:12,680 --> 05:36:16,560 CONTROL GFP VECTOR SHOWN HERE 8404 05:36:16,560 --> 05:36:18,520 WHICH PLATEAUS IN TWO WEEKS IN 8405 05:36:18,520 --> 05:36:20,200 CULTURE AND THE CELLS ARE ALL 8406 05:36:20,200 --> 05:36:21,600 DEAD BY ABOUT THREE TO FOUR 8407 05:36:21,600 --> 05:36:26,840 WEEKS IN CULTURE, BOTH OF THESE 8408 05:36:26,840 --> 05:36:32,480 CULTURES WHEN TRANSDUCED WITH A 8409 05:36:32,480 --> 05:36:34,280 BMI-1 VECTOR EXPANDED OVER 60 8410 05:36:34,280 --> 05:36:35,400 DAYS IN CULTURE. 8411 05:36:35,400 --> 05:36:36,880 THEY CONTINUE TO EXPAND. 8412 05:36:36,880 --> 05:36:40,040 IN SOME CASES WE CULTURE THE 80 8413 05:36:40,040 --> 05:36:43,000 OR MORE DAYS. 8414 05:36:43,000 --> 05:36:45,520 IF WE LOOK AT THE ERYTHROBLASTS 8415 05:36:45,520 --> 05:36:49,080 AT DIFFERENT TIME POINTS, ZERO, 8416 05:36:49,080 --> 05:36:51,600 10, 30 OR 60 THEY LOOK SIMILAR 8417 05:36:51,600 --> 05:36:54,160 AND LOOK LIKE ERYTHROBLASTS AND 8418 05:36:54,160 --> 05:36:58,480 HAVE A FAIRLY LARGE NUCLEUS AND 8419 05:36:58,480 --> 05:37:02,840 SMALL RIM OF BASOPHILIC 8420 05:37:02,840 --> 05:37:06,320 CYTOPLASM AND BY DAY SIX THEY 8421 05:37:06,320 --> 05:37:08,920 STILL LOOK LIKE ERYTHROBLASTS 8422 05:37:08,920 --> 05:37:19,320 AND HAVE NORMAL YOU EUKARY 8423 05:37:19,320 --> 05:37:22,360 EUKARYOTECYTES AND IF YOU FOCUS 8424 05:37:22,360 --> 05:37:24,520 ON THE TWO PLOTS HERE THIS IS 8425 05:37:24,520 --> 05:37:28,800 THE ONE I SHOWED BEFORE SO CD49 8426 05:37:28,800 --> 05:37:29,600 VERSUS BAN 3. 8427 05:37:29,600 --> 05:37:34,080 YOU SEE WITH THE PROLIFERATING 8428 05:37:34,080 --> 05:37:35,640 ERYTHROBLASTS TAKEN AROUND THE 8429 05:37:35,640 --> 05:37:40,520 E3 CELLS WHERE WE MOSTLY HAVE 8430 05:37:40,520 --> 05:37:43,480 EARLY CELLS EARLY IN THE 8431 05:37:43,480 --> 05:37:46,560 LINEAGE, WHEN WE THEN UNDER GO 8432 05:37:46,560 --> 05:37:49,320 TERMINAL MATURATION AND CAPTURE 8433 05:37:49,320 --> 05:37:52,400 THE CELLS LATER AT DAY 8 OF THE 8434 05:37:52,400 --> 05:37:58,640 TERMINAL CULTURATION THERE'S A 8435 05:37:58,640 --> 05:38:00,440 DIFFERENT PHENOTYPE. 8436 05:38:00,440 --> 05:38:02,040 THIS SHOWS A CYTOSPIN OF THE 8437 05:38:02,040 --> 05:38:06,120 CELLS AND A FAIR NUMBER OF THEM 8438 05:38:06,120 --> 05:38:11,240 LOOK TO BE ENUCLEATED AND I'LL 8439 05:38:11,240 --> 05:38:14,160 SHOW STUDIES IN A COUPLE 8440 05:38:14,160 --> 05:38:14,400 MINUTES. 8441 05:38:14,400 --> 05:38:15,880 >> IT'S A TWO-MINUTE WARNING. 8442 05:38:15,880 --> 05:38:17,040 >> I'LL GET THROUGH THE REST OF 8443 05:38:17,040 --> 05:38:22,520 THE SLIDES THEN, SORRY. 8444 05:38:22,520 --> 05:38:24,960 WE WERE ABLE TO DO THE SAME 8445 05:38:24,960 --> 05:38:30,000 THING USING PERIPHERAL BLOOD 8446 05:38:30,000 --> 05:38:31,200 FROM ADULT SICKLE CELL PATIENTS 8447 05:38:31,200 --> 05:38:34,000 I'LL SKIP OVER BUT THEY 8448 05:38:34,000 --> 05:38:36,640 PROLIFERATE NICELY AFTER BMI-1 8449 05:38:36,640 --> 05:38:37,000 TRANSDUCTION. 8450 05:38:37,000 --> 05:38:38,160 I'LL ALSO POINT OUT AND SORRY 8451 05:38:38,160 --> 05:38:40,800 I'M RUNNING SHORT ON TIME BUT 8452 05:38:40,800 --> 05:38:44,360 THESE CELLS WE'RE ABLE TO 8453 05:38:44,360 --> 05:38:45,480 EFFICIENTLY KNOCKOUT OR EXPRESS 8454 05:38:45,480 --> 05:38:48,960 TRANS GENES AND IN THIS CASE WE 8455 05:38:48,960 --> 05:38:52,520 KNOCKED OUT CD 55 WHICH IS THE 8456 05:38:52,520 --> 05:38:59,240 CHROMER BLOOD GROUP RECEPTOR AND 8457 05:38:59,240 --> 05:39:02,120 WE EXPRESS THE NGF RECEPTOR 8458 05:39:02,120 --> 05:39:04,840 OFTEN USED FOR SORTING CELLS AND 8459 05:39:04,840 --> 05:39:07,200 THE KEY POINT HERE IS THAT IN 8460 05:39:07,200 --> 05:39:16,840 BOTH CASES, THE ENUCLEATION WAS 8461 05:39:16,840 --> 05:39:19,520 NOT AFFECTED BY EXPRESSING THE 8462 05:39:19,520 --> 05:39:22,080 NGF RECEPTOR. 8463 05:39:22,080 --> 05:39:23,840 I MENTIONED WE'D BEEN TWEAKING 8464 05:39:23,840 --> 05:39:25,320 OUR MATURATION CULTURES AND WHAT 8465 05:39:25,320 --> 05:39:27,240 WE SEE HERE IS THAT AS WE GO 8466 05:39:27,240 --> 05:39:29,360 FURTHER DOWN THE MATURATION 8467 05:39:29,360 --> 05:39:32,360 PATHWAY, YOU CAN SEE WE START TO 8468 05:39:32,360 --> 05:39:37,240 GET MORE AND MORE MATURE LOOKING 8469 05:39:37,240 --> 05:39:40,840 RED CELLS BY ABOUT DAY 15. 8470 05:39:40,840 --> 05:39:46,600 IF WE GO TO DAY 21 WE SEE NEARLY 8471 05:39:46,600 --> 05:39:50,040 80% ENUCLEATION AT THAT POINT. 8472 05:39:50,040 --> 05:39:55,720 WE HAVE TAKEN THE CELLS AND 8473 05:39:55,720 --> 05:40:01,960 TRANSFUSED THEM AND WE HAVE MICE 8474 05:40:01,960 --> 05:40:04,440 THAT HAVE BEEN TREATED AND WHEN 8475 05:40:04,440 --> 05:40:06,440 WE TRANSFUSE THEM AT DAY ZERO WE 8476 05:40:06,440 --> 05:40:07,880 CAN STILL PICK UP CELLS UP TO 8477 05:40:07,880 --> 05:40:12,480 ABOUT SEVEN DAYS OR SO AFTER 8478 05:40:12,480 --> 05:40:12,800 TRANSFUSION. 8479 05:40:12,800 --> 05:40:17,920 ALBEIT THROUGH LOW LEVELS. 8480 05:40:17,920 --> 05:40:21,760 THE CELLS EXPRESS CD285A 8481 05:40:21,760 --> 05:40:22,480 DIFFERENTIATING THEM FROM THE 8482 05:40:22,480 --> 05:40:23,560 MOUSE RED CELLS. 8483 05:40:23,560 --> 05:40:26,080 WE CAN STILL DETECT THE CELLS 8484 05:40:26,080 --> 05:40:28,560 SEVEN DAYS OUT AND THE LONGER WE 8485 05:40:28,560 --> 05:40:33,840 GO THE MORE THE CELLS ARE 8486 05:40:33,840 --> 05:40:36,040 ENUCLEATED AND A COUPLE MORE 8487 05:40:36,040 --> 05:40:36,680 SLIDES. 8488 05:40:36,680 --> 05:40:40,560 JUST TO SHOW YOU THE CELLS DO 8489 05:40:40,560 --> 05:40:42,840 PROLIFERATE EXTENSIVELY. 8490 05:40:42,840 --> 05:40:44,800 IF YOU DO MATH ON THIS AND I 8491 05:40:44,800 --> 05:40:48,760 WANT TO BE CLEAR, THESE ARE 8492 05:40:48,760 --> 05:40:49,600 THEORETICAL CALCULATIONS. 8493 05:40:49,600 --> 05:40:51,640 WE HAVEN'T DONE THIS BUT IF YOU 8494 05:40:51,640 --> 05:40:53,680 RUN THE MATH ON THIS AND LOOK AT 8495 05:40:53,680 --> 05:40:54,640 THE EXTENT OF EXPANSION WITH 8496 05:40:54,640 --> 05:40:58,560 SOME OF THE CULTURES, YOU CAN 8497 05:40:58,560 --> 05:40:59,400 THEORETICALLY PRODUCE HUNDREDS 8498 05:40:59,400 --> 05:41:01,760 IF NOT THOUSANDS OF RED CELL 8499 05:41:01,760 --> 05:41:05,920 UNITS FROM ONE OF THESE CULTURES 8500 05:41:05,920 --> 05:41:11,240 WHICH IS REALLY EXCITING AND 8501 05:41:11,240 --> 05:41:13,240 SUGGESTS THIS COULD BE 8502 05:41:13,240 --> 05:41:16,400 POTENTIALLY CLINICALLY USEFUL. 8503 05:41:16,400 --> 05:41:21,320 THE CELLS -- IF YOU LOOK AT 8504 05:41:21,320 --> 05:41:22,600 THEIR IMMUNOPHENOTYPE FOR 8505 05:41:22,600 --> 05:41:24,920 TYPICAL RED CELL ANTIGENS, WHAT 8506 05:41:24,920 --> 05:41:29,320 YOU CAN SEE IS THE PHENOTYPE IS 8507 05:41:29,320 --> 05:41:33,080 IDENTICAL TO THE RED CELLS OF 8508 05:41:33,080 --> 05:41:35,600 THE DONOR. 8509 05:41:35,600 --> 05:41:46,160 SO IF YOU DID THIS THIS COULD BE 8510 05:41:46,640 --> 05:41:50,840 ETOLOGOUS TO THE DONOR AND 8511 05:41:50,840 --> 05:41:53,040 SEEING HEMOGLOBIN F EXPRESSION 8512 05:41:53,040 --> 05:41:58,160 IN THE SICKLE CELLS AND MATURED 8513 05:41:58,160 --> 05:42:02,880 E3 CELLS FROM SICKLE CELL DONOR 8514 05:42:02,880 --> 05:42:11,680 AND COULD PREVENT SICKLING. 8515 05:42:11,680 --> 05:42:14,040 >> WE HAVE TO WRAP IT UP. 8516 05:42:14,040 --> 05:42:15,600 >> IT LEADS TO INTERESTING 8517 05:42:15,600 --> 05:42:17,880 POTENTIAL STRATEGY I'D BE HAPPY 8518 05:42:17,880 --> 05:42:21,680 TO TALK ABOUT WHICH IS THAT WE 8519 05:42:21,680 --> 05:42:25,440 COULD SUPPORT THE NEEDS OF ALLO 8520 05:42:25,440 --> 05:42:26,200 IMMUNIZED OR NEGATIVE SICKLE 8521 05:42:26,200 --> 05:42:29,560 CELL DONORS USING THIS APPROACH 8522 05:42:29,560 --> 05:42:33,400 BECAUSE THESE TRANSFUSED CELLS 8523 05:42:33,400 --> 05:42:37,840 WOULD BE ALLOGENIC AND SHOULDN'T 8524 05:42:37,840 --> 05:42:39,200 BE TARGETED BY EXISTING 8525 05:42:39,200 --> 05:42:41,120 ANTIBODIES AND IF NEED BE WE CAN 8526 05:42:41,120 --> 05:42:43,760 LOOK AT KNOCKOUT OR OTHER 8527 05:42:43,760 --> 05:42:44,600 APPROACHES TO FURTHER INCREASE 8528 05:42:44,600 --> 05:42:47,680 HEMOGLOBIN F AND REDUCE SICKLING 8529 05:42:47,680 --> 05:42:51,720 TO MAKE UP NUMEROUS UNITS AND 8530 05:42:51,720 --> 05:42:53,920 FREEZE THEM AND THAW THEM WHEN 8531 05:42:53,920 --> 05:42:55,000 YOU NEED THEM. 8532 05:42:55,000 --> 05:42:58,920 MY BLAST SLIDE IS MY 8533 05:42:58,920 --> 05:43:01,520 ACKNOWLEDGEMENT SLIDE AND 8534 05:43:01,520 --> 05:43:03,960 COLLABORATIONS AND FUNDED BY 8535 05:43:03,960 --> 05:43:06,360 NHLBI WITH THE GRANT HERE. 8536 05:43:06,360 --> 05:43:16,880 >> ONE QUICK QUESTION FROM JOHN 8537 05:43:18,280 --> 05:43:18,440 BELCHER. 8538 05:43:18,440 --> 05:43:19,680 DO YOU THINK ADDING A VECTOR 8539 05:43:19,680 --> 05:43:22,560 WOULD IMPROVE ENGRAFTMENT OF 8540 05:43:22,560 --> 05:43:28,120 GENE EDITED FSCs. 8541 05:43:28,120 --> 05:43:31,200 >> I THINK IT WOULD BE REALLY 8542 05:43:31,200 --> 05:43:35,200 WORTH LOOKING AT THAT, ACTUALLY. 8543 05:43:35,200 --> 05:43:39,800 WE'RE JUST SURPRISED HOW LONG 8544 05:43:39,800 --> 05:43:40,840 THOSE -- WE'RE SURPRISED HOW 8545 05:43:40,840 --> 05:43:43,880 LONG WE CAN GET THOSE CELLS TO 8546 05:43:43,880 --> 05:43:45,840 PROLIFERATE THE ONLY QUESTION I 8547 05:43:45,840 --> 05:43:47,240 MIGHT HAVE AND NEEDS TO BE ST 8548 05:43:47,240 --> 05:43:50,200 STUDIED IS WHETHER THOSE CELLS 8549 05:43:50,200 --> 05:43:53,920 WOULD ENGRAPH IN THOSE WAYS 8550 05:43:53,920 --> 05:43:58,560 AFTER YOU EXPRESS BMI-1 TO 8551 05:43:58,560 --> 05:44:00,640 CONTRIBUTE TO THE ERYTHROID 8552 05:44:00,640 --> 05:44:02,520 LINEAGE BUT MAKES SENSE TO 8553 05:44:02,520 --> 05:44:02,880 INVESTIGATE. 8554 05:44:02,880 --> 05:44:04,040 >> OUR FINAL SPEAKER IS 8555 05:44:04,040 --> 05:44:04,760 DR. DAVID WOOD FROM THE 8556 05:44:04,760 --> 05:44:10,320 UNIVERSITY OF MINNESOTA. 8557 05:44:10,320 --> 05:44:11,200 >> OKAY, EVERYBODY. 8558 05:44:11,200 --> 05:44:15,240 CAN YOU SEE MY SLIDES? 8559 05:44:15,240 --> 05:44:16,640 >> PERFECT. 8560 05:44:16,640 --> 05:44:18,080 >> GREAT. 8561 05:44:18,080 --> 05:44:19,440 THANKS, VIVIEN FOR ORGANIZING 8562 05:44:19,440 --> 05:44:20,560 THE SESSION. 8563 05:44:20,560 --> 05:44:21,960 IT'S BEEN GREAT. 8564 05:44:21,960 --> 05:44:23,560 I'M ENJOYING ALL THE TALKS. 8565 05:44:23,560 --> 05:44:26,560 THANKS EVERYBODY FOR BEING HERE, 8566 05:44:26,560 --> 05:44:26,840 OBVIOUSLY. 8567 05:44:26,840 --> 05:44:28,600 I'M GOING TO TALK ABOUT SOME OF 8568 05:44:28,600 --> 05:44:31,240 WHAT MY LAB DOES AND TOOLS WE 8569 05:44:31,240 --> 05:44:33,680 BUILT I THINK ARE COMPLEMENTARY 8570 05:44:33,680 --> 05:44:34,720 AND MEASURE SIMILAR THINGS TO 8571 05:44:34,720 --> 05:44:36,760 SOME OF WHAT YOU HEARD ABOUT BUT 8572 05:44:36,760 --> 05:44:38,840 MAYBE IN A SLIGHTLY DIFFERENT 8573 05:44:38,840 --> 05:44:40,600 WAY OR TO TRY TO MEASURE 8574 05:44:40,600 --> 05:44:44,400 DIFFERENT ASPECTS OF THE CELLS 8575 05:44:44,400 --> 05:44:45,680 BIO MECHANICAL PROPERTIES. 8576 05:44:45,680 --> 05:44:46,800 I'M GOING TO START BY THANKING 8577 05:44:46,800 --> 05:44:48,080 PEOPLE SO I DON'T FORGET OR RUN 8578 05:44:48,080 --> 05:44:50,080 OUT OF TIME AT THE END. 8579 05:44:50,080 --> 05:44:52,080 SO MOST THE WORK I'M GOING TO 8580 05:44:52,080 --> 05:44:55,720 SLOW YOU TODAY AT LEAST FROM MY 8581 05:44:55,720 --> 05:44:58,520 LAB WILL BE DILLON WILLIAMS A 8582 05:44:58,520 --> 05:45:01,120 GRAD STUDENT AND A TECH IN MY 8583 05:45:01,120 --> 05:45:06,080 LAB AS WELL AS JOSÉ VALDEZ AND 8584 05:45:06,080 --> 05:45:09,920 FORMER Ph.D.s AND A FORMER 8585 05:45:09,920 --> 05:45:11,240 CLINICAL FELLOW IN THE LAB AND 8586 05:45:11,240 --> 05:45:13,080 YOU HEARD FROM CHRISTINA EARLIER 8587 05:45:13,080 --> 05:45:16,000 SOME OF THE WORK WE HAVE DONE 8588 05:45:16,000 --> 05:45:18,640 WITH THE GEORGIA TECH GROUP AND 8589 05:45:18,640 --> 05:45:22,360 I'LL SHOW YOU GROUP WITH DEN 8590 05:45:22,360 --> 05:45:25,560 JONG AND I WANT TO ACKNOWLEDGE 8591 05:45:25,560 --> 05:45:29,600 THE NGH GROUP AND JOHN HIGGINS 8592 05:45:29,600 --> 05:45:32,360 AND SHOW WORK WITH THIS GROUP AT 8593 05:45:32,360 --> 05:45:33,080 THE BEGINNING. 8594 05:45:33,080 --> 05:45:34,360 I WANT TO ACKNOWLEDGE ALL THOSE 8595 05:45:34,360 --> 05:45:39,680 FOCUS AND THE FUNDING. 8596 05:45:39,680 --> 05:45:41,560 GENERALLY SPEAKING I DON'T NEED 8597 05:45:41,560 --> 05:45:45,000 TO TELL ANYBODY SICKLE CELL 8598 05:45:45,000 --> 05:45:47,760 DISEASE BUT I WANT TO SAY MY LAB 8599 05:45:47,760 --> 05:45:50,760 IS INTERESTED IN PARTICULARLY 8600 05:45:50,760 --> 05:45:53,960 MEASURING THE BIO PHYSIC OF 8601 05:45:53,960 --> 05:45:55,280 SICKLE CELL DISEASE SPANNING 8602 05:45:55,280 --> 05:45:58,400 FROM HEMOGLOBIN POLYMERIZATION 8603 05:45:58,400 --> 05:46:02,000 AND DEFORMABILITY IN BIO 8604 05:46:02,000 --> 05:46:07,080 MECHANICS AND BLOOD FLOW AND THE 8605 05:46:07,080 --> 05:46:08,320 CIRCULATORY SYSTEM AND I'LL TELL 8606 05:46:08,320 --> 05:46:10,560 YOU ABOUT SUITES OF PROBES AT 8607 05:46:10,560 --> 05:46:13,840 THE CELLULAR SCALE AND WHOLE 8608 05:46:13,840 --> 05:46:15,000 BLOOD SCALE AND WHAT KIND OF 8609 05:46:15,000 --> 05:46:16,040 THINGS WE CAN MEASURE AT THOSE 8610 05:46:16,040 --> 05:46:17,120 DIFFERENT SCALES. 8611 05:46:17,120 --> 05:46:20,200 THE FIRST OF THOSE IS A SINGLE 8612 05:46:20,200 --> 05:46:22,600 CELL MEASUREMENT. 8613 05:46:22,600 --> 05:46:25,640 THIS WAS ALL MOTIVATED BY THE 8614 05:46:25,640 --> 05:46:27,760 IDEA OF WHAT YOU WANT TO KNOW 8615 05:46:27,760 --> 05:46:30,400 ABOUT THE SINGLE CELLS 8616 05:46:30,400 --> 05:46:31,440 ESPECIALLY RED CELLS IN THE 8617 05:46:31,440 --> 05:46:35,240 CONTEXT OF ANTI-SICKLING THERAPY 8618 05:46:35,240 --> 05:46:38,160 WHETHER IT'S GENE OR HYDROXYUREA 8619 05:46:38,160 --> 05:46:42,480 OR SOMETHING LIKE THAT, YOU WANT 8620 05:46:42,480 --> 05:46:44,520 TO KNOW HOW MUCH POLYMER THE 8621 05:46:44,520 --> 05:46:47,000 CELLS ARE MAKE AND THE RANGE OF 8622 05:46:47,000 --> 05:46:50,320 OXYGEN RETENTION THEY'LL BE 8623 05:46:50,320 --> 05:46:54,400 EXPOSED TO AS THEY GO THROUGH 8624 05:46:54,400 --> 05:46:55,120 THE VASCULATURE. 8625 05:46:55,120 --> 05:46:59,160 THIS IS WORK WITH THE NGH GROUP 8626 05:46:59,160 --> 05:47:01,640 AND IN PARTICULAR JOHN HIGGINS 8627 05:47:01,640 --> 05:47:04,400 AND OTHERS AND THIS IS BUILDING 8628 05:47:04,400 --> 05:47:07,240 ON A PLATFORM PREVIOUSLY 8629 05:47:07,240 --> 05:47:10,480 DEVELOPED TO MEASURE OXYGEN 8630 05:47:10,480 --> 05:47:13,880 SATURATION OF SINGLE RED BLOOD 8631 05:47:13,880 --> 05:47:14,160 CELLS. 8632 05:47:14,160 --> 05:47:19,240 WE KNOW HEMOGLOBIN POLYMER HAS A 8633 05:47:19,240 --> 05:47:22,600 LOWER AFFINITY THAN SOLUBLE 8634 05:47:22,600 --> 05:47:25,280 HEMOGLOBIN AND WHEN IT 8635 05:47:25,280 --> 05:47:27,560 POLYMERIZES WE SHOULD SEE THE 8636 05:47:27,560 --> 05:47:28,800 OXYGEN AS YOU LOWER THE TENSION. 8637 05:47:28,800 --> 05:47:31,320 WE USE THE SYSTEM AND THE WAY IT 8638 05:47:31,320 --> 05:47:36,080 WORKS FOR A SINGLE CELL YOU 8639 05:47:36,080 --> 05:47:38,920 ILLUMINATE IT AT TWO DIFFERENT 8640 05:47:38,920 --> 05:47:44,480 WAVE LENGTHS, 410 AND 430 AND 8641 05:47:44,480 --> 05:47:46,480 THERE'S DIFFERENT ABSORPTIONS. 8642 05:47:46,480 --> 05:47:48,640 IF YOU MEASURE THE OPTICAL 8643 05:47:48,640 --> 05:47:49,680 DENSITY AND TAKE THE RATIO OF 8644 05:47:49,680 --> 05:47:54,320 THAT IT TELLS YOU WHAT THE 8645 05:47:54,320 --> 05:47:55,680 OXYGEN SATURATION OR THE 8646 05:47:55,680 --> 05:47:56,960 HEMOGLOBIN IS INSIDE THE CELL. 8647 05:47:56,960 --> 05:47:58,360 AND SIMULTANEOUSLY BECAUSE WE'RE 8648 05:47:58,360 --> 05:48:02,160 TAKING IMAGES OF THE CELLS, YOU 8649 05:48:02,160 --> 05:48:04,600 CAN DO A MORPHOLOGICAL ANALYSIS 8650 05:48:04,600 --> 05:48:05,920 AND YOU CAN CONSIDER THIS FREE 8651 05:48:05,920 --> 05:48:07,480 DATA AND YOU CAN LOOK AT THE 8652 05:48:07,480 --> 05:48:10,280 CELLS AND SAY, DO THEY LOOK LIKE 8653 05:48:10,280 --> 05:48:13,920 SOMETHING THAT'S SOLUBLE OR 8654 05:48:13,920 --> 05:48:16,040 SOMETHING'S POLYMERIZED. 8655 05:48:16,040 --> 05:48:18,320 WHAT WE DID WAS MORE 8656 05:48:18,320 --> 05:48:20,840 SOPHISTICATED WAS TRAIN A 8657 05:48:20,840 --> 05:48:21,480 MACHINE-LEARNING ALGORITHM TO 8658 05:48:21,480 --> 05:48:22,520 DETECT THE DIFFERENCE BETWEEN 8659 05:48:22,520 --> 05:48:23,200 THE TWO. 8660 05:48:23,200 --> 05:48:26,560 IN A WAY YOU CAN GET THE 8661 05:48:26,560 --> 05:48:29,120 SATURATION AND THE MORPHOLOGICAL 8662 05:48:29,120 --> 05:48:31,200 CLASSIFICATION SAYING DO THE 8663 05:48:31,200 --> 05:48:32,560 CELLS CONTAIN POLYMER OR LOOK 8664 05:48:32,560 --> 05:48:35,680 LIKE A SOLUBLE DEFORMABLE CELL? 8665 05:48:35,680 --> 05:48:38,200 THE QUESTION IS WHAT CAN YOU DO 8666 05:48:38,200 --> 05:48:40,600 WITH THIS MEASUREMENT. 8667 05:48:40,600 --> 05:48:42,360 WE HAD A FEW QUESTIONS GOING 8668 05:48:42,360 --> 05:48:43,040 INTO THIS. 8669 05:48:43,040 --> 05:48:44,840 ONE THING I'LL SAY AT THE 8670 05:48:44,840 --> 05:48:46,280 BEGINNING, ALL THE DEVICES THAT 8671 05:48:46,280 --> 05:48:48,400 I'M GOING TO SHOW YOU, ALL THE 8672 05:48:48,400 --> 05:48:50,320 TECHNOLOGIES, WE HAVE OXYGEN 8673 05:48:50,320 --> 05:48:51,080 CONTROL ON THE DEVICE. 8674 05:48:51,080 --> 05:48:54,240 SO WE'RE GOING TO BE ABLE TO 8675 05:48:54,240 --> 05:49:04,560 TUNE THE OXYGEN TENSION OF THE 8676 05:49:04,560 --> 05:49:07,400 RED BLOOD CELLS AND WHEN I'LL 8677 05:49:07,400 --> 05:49:10,800 SHOW YOU THE DEVICE IN DETAIL 8678 05:49:10,800 --> 05:49:12,880 AND IT HAS A SCHEMATIC OF THE 8679 05:49:12,880 --> 05:49:15,040 DIFFERENT LAYERS AND SHOW WHERE 8680 05:49:15,040 --> 05:49:18,440 THE OXYGEN CONTROL COMES IN AND 8681 05:49:18,440 --> 05:49:20,360 SUFFICE TO SAY ALL THE DEVICES 8682 05:49:20,360 --> 05:49:21,080 HAVE THE OXYGEN CONTROL BUILT 8683 05:49:21,080 --> 05:49:29,440 INTO THEM. 8684 05:49:29,440 --> 05:49:32,280 THIS IS A SICKLE CELL SAMPLE AND 8685 05:49:32,280 --> 05:49:35,240 WHAT YOU MEASURE UNDER ROOM 8686 05:49:35,240 --> 05:49:36,400 ATMOSPHERE OXYGEN LEVELS. 8687 05:49:36,400 --> 05:49:38,320 ALL THE CELLS ARE PRETTY MUCH 8688 05:49:38,320 --> 05:49:42,920 FULLY SATURATED WITH OXYGEN. 8689 05:49:42,920 --> 05:49:46,040 THE QUESTION YOU CAN ASK IS WHAT 8690 05:49:46,040 --> 05:49:49,040 WILL HAPPEN TO THE DISTRIBUTION 8691 05:49:49,040 --> 05:49:50,400 OF THE CELL SATURATION AS IT 8692 05:49:50,400 --> 05:49:52,600 GOES DOWN IN OXYGEN. 8693 05:49:52,600 --> 05:49:55,760 MY NAIVE THOUGHT IS WHAT YOU'D 8694 05:49:55,760 --> 05:49:58,040 EXPECT TO SEE IS THIS WILL MOVE 8695 05:49:58,040 --> 05:49:59,120 TO THE LEFT BECAUSE THE 8696 05:49:59,120 --> 05:50:00,560 SATURATION WILL GO DOWN AS YOU 8697 05:50:00,560 --> 05:50:02,840 DECREASE THE OXYGEN AND IF YOU 8698 05:50:02,840 --> 05:50:05,120 START MAKING POLYMER INSIDE THE 8699 05:50:05,120 --> 05:50:07,240 CELLS AS YOU INCREASE THE AMOUNT 8700 05:50:07,240 --> 05:50:09,760 OF POLYMER, YOU'LL SPREAD THIS 8701 05:50:09,760 --> 05:50:10,560 DISTRIBUTION OUT. 8702 05:50:10,560 --> 05:50:12,760 IT'S GOING TO BROADEN. 8703 05:50:12,760 --> 05:50:15,200 YOU WOULD HAVE THIS MONOMODAL 8704 05:50:15,200 --> 05:50:16,000 DISTRIBUTION AND IT WOULD 8705 05:50:16,000 --> 05:50:21,840 CONTINUE TO BROADEN AND LOWER 8706 05:50:21,840 --> 05:50:25,760 AND EVENTUALLY UNTIL YOU GET TO 8707 05:50:25,760 --> 05:50:26,440 ZERO OXYGEN. 8708 05:50:26,440 --> 05:50:27,640 WHAT HAPPENS IS THAT AS YOU TURN 8709 05:50:27,640 --> 05:50:31,040 DOWN THE OXYGEN SO THIS IS THE 8710 05:50:31,040 --> 05:50:32,480 8%. 8711 05:50:32,480 --> 05:50:42,000 THIS IS ARTERIAL LEVEL OXYGEN 8712 05:50:42,000 --> 05:50:43,200 AND YOU FORM A POPULATION OF 8713 05:50:43,200 --> 05:50:46,480 CELLS WITH A LOW OXYGEN 8714 05:50:46,480 --> 05:50:46,800 SATURATION. 8715 05:50:46,800 --> 05:50:51,200 WHAT THIS IS INDICATING IS THAT 8716 05:50:51,200 --> 05:50:55,280 THESE CELLS ARE QUITE A LOT OF 8717 05:50:55,280 --> 05:50:57,240 POLYMER AND IT DOESN'T BIND 8718 05:50:57,240 --> 05:50:58,760 OXYGEN EFFICIENTLY AND THE 8719 05:50:58,760 --> 05:51:00,680 SATURATION OF THOSE CELLS IS 8720 05:51:00,680 --> 05:51:02,040 DRAMATICALLY LOWER THAN THIS 8721 05:51:02,040 --> 05:51:04,600 POPULATION OF CELLS WHICH HAS 8722 05:51:04,600 --> 05:51:07,120 LITTLE TO NO POLYMER AND ALL THE 8723 05:51:07,120 --> 05:51:10,680 CELLS ARE AT THE SAME OXYGEN 8724 05:51:10,680 --> 05:51:10,920 TENSION. 8725 05:51:10,920 --> 05:51:13,560 YOU FORM THESE TWO POPULATIONS 8726 05:51:13,560 --> 05:51:15,760 OF CELLS AND AS YOU CONTINUE 8727 05:51:15,760 --> 05:51:17,400 GOING DOWN IN OXYGEN NOW WE'RE 8728 05:51:17,400 --> 05:51:18,800 AT 6%. 8729 05:51:18,800 --> 05:51:21,000 THIS IS CAPILLARY LEVELS. 8730 05:51:21,000 --> 05:51:23,200 YOU'VE GOT AGAIN THIS POPULATION 8731 05:51:23,200 --> 05:51:25,600 THAT HAS A RELATIVELY HIGH 8732 05:51:25,600 --> 05:51:28,040 SATURATION AND LITTLE OR NO POLY 8733 05:51:28,040 --> 05:51:29,920 AND A RELATIVELY LARGE 8734 05:51:29,920 --> 05:51:31,240 POPULATION HERE NOW THAT HAS A 8735 05:51:31,240 --> 05:51:34,600 LOT OF POLYMER IN THEM AND AT A 8736 05:51:34,600 --> 05:51:35,280 LOWER SATURATION BECAUSE OF THE 8737 05:51:35,280 --> 05:51:37,480 PRESENTATION OF THE POLYMER. 8738 05:51:37,480 --> 05:51:39,200 WHAT'S HAPPENING IS YOU GO DOWN 8739 05:51:39,200 --> 05:51:41,760 IN OXYGEN AND YOU'RE BASICALLY 8740 05:51:41,760 --> 05:51:42,920 GETTING A SHARP INCREASE IN THE 8741 05:51:42,920 --> 05:51:44,160 AMOUNT OF POLYMER IN SOME OF THE 8742 05:51:44,160 --> 05:51:48,160 CELLS. 8743 05:51:48,160 --> 05:51:52,600 SO YOU'RE GETTING THIS BIMODAL 8744 05:51:52,600 --> 05:51:53,600 DISTRIBUTION OF SOME OF THE 8745 05:51:53,600 --> 05:51:57,280 CELLS AND SOME POLYMER AND SOME 8746 05:51:57,280 --> 05:51:58,080 WITH NONE. 8747 05:51:58,080 --> 05:52:00,240 IT'S NOT WHAT WE EXPECTED TO SEE 8748 05:52:00,240 --> 05:52:01,640 AND IT'S INTERESTING AND IF YOU 8749 05:52:01,640 --> 05:52:05,360 THINK ABOUT IT FROM A CLINICAL 8750 05:52:05,360 --> 05:52:07,240 PERSPECTIVE AND FROM A BIO 8751 05:52:07,240 --> 05:52:07,960 PHYSICAL PERSPECTIVE IT'S AN 8752 05:52:07,960 --> 05:52:09,000 INTERESTING OUTCOME AND NOT ONE 8753 05:52:09,000 --> 05:52:10,600 I PREDICTED AND THERE'S 8754 05:52:10,600 --> 05:52:13,040 INTERESTING QUESTIONS BUT FROM A 8755 05:52:13,040 --> 05:52:14,600 CLINICAL PERSPECTIVE IT'S A NICE 8756 05:52:14,600 --> 05:52:16,040 MEASUREMENT BECAUSE IT MEANS 8757 05:52:16,040 --> 05:52:18,080 THERE'S TWO POPULATIONS HERE. 8758 05:52:18,080 --> 05:52:19,680 THIS IS WHAT WE'VE CONSIDERED 8759 05:52:19,680 --> 05:52:20,320 THE BAD POPULATION. 8760 05:52:20,320 --> 05:52:22,600 WE DON'T WANT THE CELLS THERE AT 8761 05:52:22,600 --> 05:52:23,120 ALL. 8762 05:52:23,120 --> 05:52:24,880 WE DON'T WANT TO SEE THESE AT 8763 05:52:24,880 --> 05:52:26,520 ANY OXYGEN TENSION. 8764 05:52:26,520 --> 05:52:31,160 AN EASY MEASURE OF A THERAPEUTIC 8765 05:52:31,160 --> 05:52:32,560 EFFECT IS TO ASK HOW MANY CELLS 8766 05:52:32,560 --> 05:52:34,960 ARE IN THIS POPULATION VERSUS 8767 05:52:34,960 --> 05:52:36,840 THIS AT ANY GIVEN OXYGEN TENSION 8768 05:52:36,840 --> 05:52:38,560 AND SHIFT THAT WITH THE THERAPY 8769 05:52:38,560 --> 05:52:40,320 AND SHIFT CELLS FROM THE 8770 05:52:40,320 --> 05:52:41,840 POPULATION TO THIS ONE BY 8771 05:52:41,840 --> 05:52:46,720 APPLYING AN ANTI-SICKLING 8772 05:52:46,720 --> 05:52:51,240 THERAPY OR ANTI-POLYMERIZATION 8773 05:52:51,240 --> 05:52:54,600 THERAPY AND WE'VE BEEN FORTUNATE 8774 05:52:54,600 --> 05:52:56,880 TO PARTICIPATE OR MAKE 8775 05:52:56,880 --> 05:52:59,200 MEASUREMENTS FROM THE BLOOD 8776 05:52:59,200 --> 05:53:01,120 SAMPLES FROM THE GENE THERAPY 8777 05:53:01,120 --> 05:53:02,000 TRIAL AT BOSTON CHILDREN'S 8778 05:53:02,000 --> 05:53:04,200 HOSPITAL THEY'RE DOING A VECTOR 8779 05:53:04,200 --> 05:53:07,640 TO SILENCE BCL11A AND MAKE 8780 05:53:07,640 --> 05:53:09,640 HEMOGLOBIN F. 8781 05:53:09,640 --> 05:53:12,480 WE RAN THIS EXACT ASSAY ON A LOT 8782 05:53:12,480 --> 05:53:14,640 OF THOSE PATIENTS WHO WERE 8783 05:53:14,640 --> 05:53:16,080 UNDERGOING THE GENE THERAPY. 8784 05:53:16,080 --> 05:53:18,480 AND I'M GOING TO START YOU OUT 8785 05:53:18,480 --> 05:53:20,320 WHICH IS TO SAY THAT ONE OF THE 8786 05:53:20,320 --> 05:53:25,120 THINGS THAT'S INTERESTING IS IF 8787 05:53:25,120 --> 05:53:28,200 YOU COMPARE THIS GENE THERAPY 8788 05:53:28,200 --> 05:53:33,000 POPULATION TO THOSE TREATED WITH 8789 05:53:33,000 --> 05:53:35,200 HYDROXYUREA THE GENE THERAPY 8790 05:53:35,200 --> 05:53:37,240 PATIENTS AREN'T COMING TO IN THE 8791 05:53:37,240 --> 05:53:38,760 HOSPITAL WITH OCCLUSIONS WHILE 8792 05:53:38,760 --> 05:53:43,320 THE HIYDROXYUREA PATIENTS ARE AD 8793 05:53:43,320 --> 05:53:48,760 IT'S YOU CAN SAY IT'S DUE TO UGF 8794 05:53:48,760 --> 05:53:50,680 BUT THERE'S A POPULATION OF THE 8795 05:53:50,680 --> 05:53:54,000 HYDROXYUREA PATIENTS NOT MAKING 8796 05:53:54,000 --> 05:53:58,200 A LOT OF HBF AND THERE'S A 8797 05:53:58,200 --> 05:53:59,880 POPULATION MAKING A LOT AND 8798 05:53:59,880 --> 05:54:01,160 COMPARABLE TO WHAT THE GENE 8799 05:54:01,160 --> 05:54:02,520 THERAPY PATIENTS ARE MAKING AND 8800 05:54:02,520 --> 05:54:04,160 THEY'RE NOT DIFFERENT 8801 05:54:04,160 --> 05:54:04,480 STATISTICALLY. 8802 05:54:04,480 --> 05:54:08,600 THE TWO POPULATIONS BASED ON HBF 8803 05:54:08,600 --> 05:54:11,600 ALONE AND WHEN WE ASK WHAT'S THE 8804 05:54:11,600 --> 05:54:13,920 FRACTION OF THE RED BLOOD CELLS 8805 05:54:13,920 --> 05:54:16,640 THAT DON'T MAKE POLYMER AND I 8806 05:54:16,640 --> 05:54:20,920 HAVE THIS AT TWO DIFFERENT 8807 05:54:20,920 --> 05:54:22,600 OXYGEN TENSIONS AND WHEN WE ASK 8808 05:54:22,600 --> 05:54:23,400 THE SIZE OF THE POPULATION WE 8809 05:54:23,400 --> 05:54:25,640 SEE A DIFFERENCE. 8810 05:54:25,640 --> 05:54:30,920 WE'RE SEEING THE BCL11 TREATED 8811 05:54:30,920 --> 05:54:36,880 PATIENT MAKING LESS POLYMER THAN 8812 05:54:36,880 --> 05:54:38,760 THE HIGH PATIENTS. 8813 05:54:38,760 --> 05:54:41,800 AND SO JUST TO SHOW YOU THAT 8814 05:54:41,800 --> 05:54:46,200 THERE REALLY IS A DIFFERENCE IN 8815 05:54:46,200 --> 05:54:48,440 THIS FUNCTIONAL VERSUS THE PLAIN 8816 05:54:48,440 --> 05:54:49,680 MOLECULAR READOUT AND IF YOU 8817 05:54:49,680 --> 05:54:51,040 MEASURE THE F CELLS IT GOES THE 8818 05:54:51,040 --> 05:54:52,640 OPPOSITE DIRECTION OF WHAT YOU 8819 05:54:52,640 --> 05:54:52,880 EXPECT. 8820 05:54:52,880 --> 05:54:57,480 IT GETS MORE COMPLICATED. 8821 05:54:57,480 --> 05:54:59,120 NEITHER OF THE BASIC MOLECULAR 8822 05:54:59,120 --> 05:55:01,640 MEASUREMENTS CAN GIVE YOU WHAT 8823 05:55:01,640 --> 05:55:03,720 YOU CAN GET FROM READING FROM 8824 05:55:03,720 --> 05:55:05,640 THE POLYMERIZATION. 8825 05:55:05,640 --> 05:55:07,040 WE UNDERSTAND WHERE THE DATA'S 8826 05:55:07,040 --> 05:55:08,960 COMING FROM AND WE'RE PREPARING 8827 05:55:08,960 --> 05:55:10,400 THAT NOW BUT FOR PURPOSES OF 8828 05:55:10,400 --> 05:55:12,360 TIME I'M NOT GOING TO THAT HERE 8829 05:55:12,360 --> 05:55:14,040 AND GOING TO TALK ABOUT IT 8830 05:55:14,040 --> 05:55:15,200 LATER. 8831 05:55:15,200 --> 05:55:17,520 THERE'S IMPLICATIONS OF THIS. 8832 05:55:17,520 --> 05:55:19,040 WHAT'S INTERESTING IS THE MOST 8833 05:55:19,040 --> 05:55:22,120 BASIC ONE IS I THINK THE IDEA OF 8834 05:55:22,120 --> 05:55:24,680 MEASURING HBS POLYMER IS 8835 05:55:24,680 --> 05:55:26,760 POWERFUL AND TELLS YOU WHAT YOU 8836 05:55:26,760 --> 05:55:30,080 WANT TO KNOW BUT FROM A BIO 8837 05:55:30,080 --> 05:55:31,240 PHYSICAL PERSPECTIVE IT'S 8838 05:55:31,240 --> 05:55:33,360 INTERESTING TO SEE THE 8839 05:55:33,360 --> 05:55:34,080 POLYMERIZATION SEEMS TO BE THE 8840 05:55:34,080 --> 05:55:38,520 ALL OR NOTHING PHENOMENON ACROSS 8841 05:55:38,520 --> 05:55:40,320 A PHYSIO LOGICALLY RELEVANT 8842 05:55:40,320 --> 05:55:41,960 RANGE OF ELEMENTS. 8843 05:55:41,960 --> 05:55:46,480 IF THAT'S TRUE, IF SOME OF THE 8844 05:55:46,480 --> 05:55:48,920 CELLS HAVE A LOT OF POLYMER AND 8845 05:55:48,920 --> 05:55:51,880 SOME HAVE NONE IF YOU MEASURE 8846 05:55:51,880 --> 05:55:58,640 THE DEFORMABILITY YOU SHOULD SEE 8847 05:55:58,640 --> 05:56:00,400 THE BI-DIRECTIONAL DEFORMABILITY 8848 05:56:00,400 --> 05:56:02,760 AND THERE'S CLEVER STUFF GOING 8849 05:56:02,760 --> 05:56:04,440 UPON I'LL SHOW A SLIGHTLY 8850 05:56:04,440 --> 05:56:07,240 DIFFERENT EASY UNDER CONTROLLED 8851 05:56:07,240 --> 05:56:09,520 HIYPOXIA AND THIS IS DIFFERENT 8852 05:56:09,520 --> 05:56:12,120 FROM THE EAK TA 8853 05:56:15,760 --> 05:56:17,160 EKTACYTOMETRY EARLIER AND WE'RE 8854 05:56:17,160 --> 05:56:21,720 GOING TO USE HYDRO DYNAMIC 8855 05:56:21,720 --> 05:56:23,200 SQUEEZING AND OUR GOAL IS FOR 8856 05:56:23,200 --> 05:56:25,720 THE CELL NOT TO TOUCH THE WALL 8857 05:56:25,720 --> 05:56:28,480 OF THE DEVICE AND ONLY WANT THE 8858 05:56:28,480 --> 05:56:31,000 FLUID TO SQUEEZE THE CELL SO WE 8859 05:56:31,000 --> 05:56:32,880 ONLY MEASURE CELL DEFORMABILITY 8860 05:56:32,880 --> 05:56:35,200 AND NOT INTERACTIONS WITH THE 8861 05:56:35,200 --> 05:56:35,400 WALLS. 8862 05:56:35,400 --> 05:56:36,360 THERE'S DIFFERENT REASONS TO 8863 05:56:36,360 --> 05:56:38,280 WANT TO MEASURE THOSE BUT FOR 8864 05:56:38,280 --> 05:56:42,320 OUR PURPOSES WE ONLY WANT TO 8865 05:56:42,320 --> 05:56:43,400 MEASURE PERMEABILITY. 8866 05:56:43,400 --> 05:56:45,440 A DEFORMABLE CELLS GOES THROUGH 8867 05:56:45,440 --> 05:56:48,520 AND POLYMERIZED CELL GOES 8868 05:56:48,520 --> 05:56:49,920 THROUGH AND NOTHING HAPPENS TO 8869 05:56:49,920 --> 05:56:50,560 IT AND THAT'S WHAT WE EXPECT TO 8870 05:56:50,560 --> 05:56:55,320 SEE HERE. 8871 05:56:55,320 --> 05:56:58,400 AS WITH MOST CHIPS WE HAVE AN 8872 05:56:58,400 --> 05:57:02,640 ELABORATE SET UP WITH A CAMERA 8873 05:57:02,640 --> 05:57:04,320 AND MICROSCOPE AND CAN TUNE IN 8874 05:57:04,320 --> 05:57:06,560 THE OXYGEN TENSIONS OF THE CELLS 8875 05:57:06,560 --> 05:57:11,080 SO WE KNOW EXACTLY WHERE THEY'RE 8876 05:57:11,080 --> 05:57:11,240 AT. 8877 05:57:11,240 --> 05:57:15,240 I DON'T NEED TO GO INTO TOO MUCH 8878 05:57:15,240 --> 05:57:19,200 HERE AND THERE'S AN AREA OVER 8879 05:57:19,200 --> 05:57:21,040 PERIMETER MEASUREMENT MUCH THE 8880 05:57:21,040 --> 05:57:23,240 CELLS TO GIVE A MEASURE OF 8881 05:57:23,240 --> 05:57:24,680 DEFORMABILITY. 8882 05:57:24,680 --> 05:57:26,400 HOW MUCH YOU CHANGE THAT AREA 8883 05:57:26,400 --> 05:57:29,640 AND IT'S A MEASURE OF 8884 05:57:29,640 --> 05:57:30,680 DEFORMABILITY. 8885 05:57:30,680 --> 05:57:34,120 IT'S A HUGE MEASUREMENT AND HOW 8886 05:57:34,120 --> 05:57:35,640 MUCH DOES SHAPE CHANGE WHEN IT 8887 05:57:35,640 --> 05:57:36,920 GETS SQUEEZED. 8888 05:57:36,920 --> 05:57:38,600 IF WE MAKE THE MEASUREMENT 8889 05:57:38,600 --> 05:57:41,880 ACROSS A RANGE OF OXYGEN 8890 05:57:41,880 --> 05:57:43,600 TENSIONS WE SEE WHAT WE SHOWED 8891 05:57:43,600 --> 05:57:48,240 WITH THE SATURATION MEASUREMENT. 8892 05:57:48,240 --> 05:57:50,720 21% YOU GET THIS MONOMODAL 8893 05:57:50,720 --> 05:57:51,520 DISTRIBUTION WHERE ALL THE CELLS 8894 05:57:51,520 --> 05:57:55,000 ARE KIND OF YOU HAVE A RANGE OF 8895 05:57:55,000 --> 05:57:56,720 DEFORMABILITIES WHICH IS NOT 8896 05:57:56,720 --> 05:57:56,920 USUAL. 8897 05:57:56,920 --> 05:57:58,160 THAT'S WHAT WE'D EXPECT AS SOON 8898 05:57:58,160 --> 05:58:01,600 AS WE START GOING DOWN IN OXYGEN 8899 05:58:01,600 --> 05:58:04,120 WE SEE THE SUBPOPULATION SHOW UP 8900 05:58:04,120 --> 05:58:08,040 WITH A LOW DEFORMABILITY AND 8901 05:58:08,040 --> 05:58:09,280 WHAT'S INTERESTING AND THAT 8902 05:58:09,280 --> 05:58:12,440 POPULATION OF CELLS GROWS AS YOU 8903 05:58:12,440 --> 05:58:14,960 DROP OXYGEN WHILE THE HIGH 8904 05:58:14,960 --> 05:58:15,680 DEFORMABILITY POPULATION SHRINKS 8905 05:58:15,680 --> 05:58:19,000 AS YOU DROP THE OXYGEN TENSION. 8906 05:58:19,000 --> 05:58:20,760 WHAT'S INTERESTING HERE AND THIS 8907 05:58:20,760 --> 05:58:24,120 IS MAYBE EVEN CLEARER THAN WITH 8908 05:58:24,120 --> 05:58:25,200 THE OXYGEN SATURATION 8909 05:58:25,200 --> 05:58:27,360 MEASUREMENT, IF YOU LOOK AT THE 8910 05:58:27,360 --> 05:58:28,600 MEDIAN OF THIS PEAK HERE IT'S 8911 05:58:28,600 --> 05:58:30,760 NOT REALLY CHANGING AS WE DROP 8912 05:58:30,760 --> 05:58:33,120 THE OXYGEN TENSION WHICH KIND OF 8913 05:58:33,120 --> 05:58:35,440 IMPLIES THE AMOUNT OF POLYMER IN 8914 05:58:35,440 --> 05:58:40,360 THE CELLS ISN'T CHANGING OR AT 8915 05:58:40,360 --> 05:58:43,880 LEAST THE AMOUNT THE LEVEL OF 8916 05:58:43,880 --> 05:58:45,440 DEFORMABILITY ISN'T CHANGING AS 8917 05:58:45,440 --> 05:58:47,840 WE DROP THE OXYGEN TENSION 8918 05:58:47,840 --> 05:58:49,200 THEY'RE ABOUT AS STIFF AS THEY 8919 05:58:49,200 --> 05:58:52,120 WERE WHEN THEY FIRST POLYMERIZED 8920 05:58:52,120 --> 05:58:54,040 OR FIRST FORMED POLYMER. 8921 05:58:54,040 --> 05:58:54,720 THAT'S REALLY INTERESTING. 8922 05:58:54,720 --> 05:58:57,840 THIS IS JUST ONE SAMPLE BUT OF 8923 05:58:57,840 --> 05:58:59,560 COURSE YOU CAN MEASURE ACROSS A 8924 05:58:59,560 --> 05:59:01,160 RANGE OF BLOOD SAMPLES FROM 8925 05:59:01,160 --> 05:59:04,040 DIFFERENT PATIENTS AND YOU SEE 8926 05:59:04,040 --> 05:59:06,880 THE SAME THING ACROSS ALL OF 8927 05:59:06,880 --> 05:59:09,400 THEM WITH THIS BIMODAL 8928 05:59:09,400 --> 05:59:11,000 DISTRIBUTION AND YOU SAY IF YOU 8929 05:59:11,000 --> 05:59:15,000 CAN MEASURE WHY AND SATURATION 8930 05:59:15,000 --> 05:59:17,840 WHY NOT BOTH AND THIS IS A QUICK 8931 05:59:17,840 --> 05:59:19,680 DEMONSTRATION THAT WE CAN DO 8932 05:59:19,680 --> 05:59:22,600 THAT TOO AND LOOK AT THE 8933 05:59:22,600 --> 05:59:26,120 DIFFERENT OXYGEN TENSIONS AND 8934 05:59:26,120 --> 05:59:27,640 IT'S WELL CORRELATED. 8935 05:59:27,640 --> 05:59:30,120 I THINK THIS HAD SOME PRETTY 8936 05:59:30,120 --> 05:59:31,200 IMPORTANT IMPLICATIONS. 8937 05:59:31,200 --> 05:59:35,200 SO WE DO SEE THERE'S TWO 8938 05:59:35,200 --> 05:59:39,200 DISTINCT MECHANICAL POPULATIONS 8939 05:59:39,200 --> 05:59:42,240 OF RED CELLS IN SICKLE CELL AND 8940 05:59:42,240 --> 05:59:43,880 I THINK THE RELATIVE FRACTIONS 8941 05:59:43,880 --> 05:59:46,560 OF THE TWO POPULATIONS IS REALLY 8942 05:59:46,560 --> 05:59:48,120 A GREAT COMPLICATION FOR ANY 8943 05:59:48,120 --> 05:59:50,880 KIND OF ANTI-SICKLING THERAPY 8944 05:59:50,880 --> 05:59:52,160 INCLUDING GENE THERAPY. 8945 05:59:52,160 --> 05:59:55,480 I ALSO THINK AND I THINK 8946 05:59:55,480 --> 05:59:57,400 CHRISTINA'S DATA HIGHLIGHTS THIS 8947 05:59:57,400 --> 05:59:59,520 REALLY WELL THE PRESENCE OF THE 8948 05:59:59,520 --> 06:00:02,600 STIFF CELLS EVEN A SMALL 8949 06:00:02,600 --> 06:00:04,320 POPULATION HAVE HIGH ARTERIAL 8950 06:00:04,320 --> 06:00:07,640 OXYGEN TENSIONS TO ME HAS 8951 06:00:07,640 --> 06:00:09,560 IMPLICATIONS FOR CONTINUOUS 8952 06:00:09,560 --> 06:00:10,600 VASCULAR DAMAGE AND YOU CAN'T 8953 06:00:10,600 --> 06:00:12,640 AVOID THAT ONCE YOU SEE THE 8954 06:00:12,640 --> 06:00:15,200 CELLS ARE AROUND AT ALL OXYGEN 8955 06:00:15,200 --> 06:00:15,520 TENSIONS. 8956 06:00:15,520 --> 06:00:17,480 AND I'LL ALSO SAY AND THIS IS 8957 06:00:17,480 --> 06:00:18,920 ANOTHER INTEREST OF MINE IS THAT 8958 06:00:18,920 --> 06:00:21,840 THAT DISTRIBUTION OF MECHANICAL 8959 06:00:21,840 --> 06:00:24,960 PROPERTIES WILL DRIVE ALTERED 8960 06:00:24,960 --> 06:00:26,520 BLOOD FLOW. 8961 06:00:26,520 --> 06:00:27,600 SO I'LL QUICKLY TRANSITION TO 8962 06:00:27,600 --> 06:00:29,280 THIS AND PROBABLY NOT SHOW IT 8963 06:00:29,280 --> 06:00:31,480 ALL IN THE INTEREST OF TIME BUT 8964 06:00:31,480 --> 06:00:35,280 A REMINDER SICKLE BLOOD FLOW IS 8965 06:00:35,280 --> 06:00:37,560 IMPAIRED UNDER HYPOXIC 8966 06:00:37,560 --> 06:00:40,560 CONDITIONS AND THIS IS SICKLE 8967 06:00:40,560 --> 06:00:43,480 BLOOD FLOW UNDER NORMAL 8968 06:00:43,480 --> 06:00:44,760 CONDITIONS AND THIS IS WHAT IT 8969 06:00:44,760 --> 06:00:46,800 LOOKS LIKE WHEN YOU TAKE OUT THE 8970 06:00:46,800 --> 06:00:47,000 OXYGEN. 8971 06:00:47,000 --> 06:00:49,320 I LIKE TO SHOW THE VIDEO BECAUSE 8972 06:00:49,320 --> 06:00:52,600 IT GIVES PEOPLE A SENSE OF HOW 8973 06:00:52,600 --> 06:00:54,520 DRAMATIC THE CHANGE IS FROM THIS 8974 06:00:54,520 --> 06:00:58,560 TO THIS WHEN YOU TAKE THE OXYGEN 8975 06:00:58,560 --> 06:00:58,720 WAY. 8976 06:00:58,720 --> 06:01:00,720 THE CELLS ARE MORPHOLOGICALLY 8977 06:01:00,720 --> 06:01:05,880 DIFFERENT AND THE BLOOD COMES 8978 06:01:05,880 --> 06:01:12,760 ALMOST TO A COMPLETE STOP AND 8979 06:01:12,760 --> 06:01:15,920 YOU CAN CONTROL THE BLOOD FLOW 8980 06:01:15,920 --> 06:01:19,160 AND THE CONTROL HYPOXIA HAS OVER 8981 06:01:19,160 --> 06:01:21,360 SICKLE CELL DISEASE AND WE 8982 06:01:21,360 --> 06:01:26,840 CREATE THE DEVICES TO LOOK AT 8983 06:01:26,840 --> 06:01:28,640 THIS UNDER WELL CONTROLLED 8984 06:01:28,640 --> 06:01:30,320 OXYGEN TENSION AND THAT'S ON 8985 06:01:30,320 --> 06:01:31,360 THIS SLIDE. 8986 06:01:31,360 --> 06:01:33,800 WE HAVE A BLOOD LAYER AT THE 8987 06:01:33,800 --> 06:01:35,240 BOTTOM SHOWN IN RED HERE. 8988 06:01:35,240 --> 06:01:38,160 WE HAVE A HYDRATION LAYER AND 8989 06:01:38,160 --> 06:01:43,680 THE TOP WE HAVE A GAS LAYER 8990 06:01:43,680 --> 06:01:46,800 WHERE WE CAN FLOW GAS WITH 8991 06:01:46,800 --> 06:01:49,360 CONTROLLED OXYGEN TENSION AND IT 8992 06:01:49,360 --> 06:01:51,240 CAN DIFFUSE AND THAT'S HOW WE 8993 06:01:51,240 --> 06:01:54,880 CONTROL OXYGEN AND AGAIN WE CAN 8994 06:01:54,880 --> 06:01:57,200 CONTROL IT PRECISELY AND WHAT 8995 06:01:57,200 --> 06:01:58,600 OXYGEN TENSION THE CELLS ARE 8996 06:01:58,600 --> 06:01:59,040 SEEING. 8997 06:01:59,040 --> 06:02:09,480 I'VE GOT TWO MINUTES HERE. 8998 06:02:15,040 --> 06:02:18,040 AND WE CAN MEASURE THE OXYGEN 8999 06:02:18,040 --> 06:02:19,200 FIELD AND HIGHER RESOLUTION BUT 9000 06:02:19,200 --> 06:02:21,760 SOME COOL STUFF YOU CAN DO WITH 9001 06:02:21,760 --> 06:02:24,120 THIS BECAUSE WE HAVE HIGH 9002 06:02:24,120 --> 06:02:26,240 RESOLUTION VELOCITY FIELDS YOU 9003 06:02:26,240 --> 06:02:28,600 CAN LOOK AT THE PROPERTIES OF 9004 06:02:28,600 --> 06:02:30,320 BLOOD FLOW AND THAT'S IMPORTANT 9005 06:02:30,320 --> 06:02:33,200 IF WHAT YOU WANT TO DO IS 9006 06:02:33,200 --> 06:02:34,800 EXTRAPOLATE THAT TO LARGER 9007 06:02:34,800 --> 06:02:37,920 VESSELS AND WE'VE MEASURED THE 9008 06:02:37,920 --> 06:02:39,960 BLOOD UNDER THE CONDITIONS AND 9009 06:02:39,960 --> 06:02:42,480 SIMULATE WHAT THE BLOOD FLOW 9010 06:02:42,480 --> 06:02:44,800 WOULD LOOK LIKE AND THIS IS 9011 06:02:44,800 --> 06:02:46,560 TAKEN FROM MRI IMAGES AND 9012 06:02:46,560 --> 06:02:48,840 COMPUTING THE BLOOD FLOW BASED 9013 06:02:48,840 --> 06:02:50,520 ON WHAT WE MEASURE AND YOU CAN 9014 06:02:50,520 --> 06:02:54,960 DO THINGS LIKE PREDICT WHAT THE 9015 06:02:54,960 --> 06:02:56,960 WALL SHEER STRESS MIGHT BE AND 9016 06:02:56,960 --> 06:02:59,160 CAN IMPROVE WHEN YOU TREAT A 9017 06:02:59,160 --> 06:03:01,240 PATIENT WITH A TRANSFUSION. 9018 06:03:01,240 --> 06:03:03,320 I WON'T GO INTO THIS BUT TO SAY 9019 06:03:03,320 --> 06:03:06,160 OTHER THINGS YOU CAN DO IS 9020 06:03:06,160 --> 06:03:09,560 THERE'S A NICE STUDY WE'VE DONE 9021 06:03:09,560 --> 06:03:11,800 WHERE YOU CAN TAKE BLOOD FROM 9022 06:03:11,800 --> 06:03:14,600 PATIENTS AND TREAT IT AND SEE 9023 06:03:14,600 --> 06:03:15,280 THE IMPROVEMENT IN THE BLOOD 9024 06:03:15,280 --> 06:03:20,920 FLOW AND SEE THE DRAMATIC 9025 06:03:20,920 --> 06:03:28,280 IMPROVEMENT WHEN YOU TREAT WITH 9026 06:03:28,280 --> 06:03:30,280 VOXELOTOR AND YOU CAN SEE 9027 06:03:30,280 --> 06:03:33,040 INFORMATICS TO SEE WHAT'S 9028 06:03:33,040 --> 06:03:34,160 DRIVING THE CHANGES. 9029 06:03:34,160 --> 06:03:35,680 WE DID THAT WITH THE SUBSET OF 9030 06:03:35,680 --> 06:03:38,080 PATIENTS AND ONE THING YOU CAN 9031 06:03:38,080 --> 06:03:39,160 SEE IMMEDIATELY FROM THE HEAT 9032 06:03:39,160 --> 06:03:45,040 MAP IS THE SS AND SC PATIENTS 9033 06:03:45,040 --> 06:03:55,520 CLUSTER VERY NICELY AND HBC 9034 06:04:01,240 --> 06:04:07,200 POSITIVELY CORRESPONDS AND MAYBE 9035 06:04:07,200 --> 06:04:09,840 IT SYNERGISTICALLY BINDS. 9036 06:04:09,840 --> 06:04:12,600 AND I'LL SAY WE CAN MAKE THESE 9037 06:04:12,600 --> 06:04:15,760 MEASUREMENTS IN MANY SCALES. 9038 06:04:15,760 --> 06:04:17,840 I THINK THE SINGLE CELL 9039 06:04:17,840 --> 06:04:19,240 PROPERTIES ARE REALLY IMPORTANT 9040 06:04:19,240 --> 06:04:22,160 IN REVEALING MECHANISMS FOR THE 9041 06:04:22,160 --> 06:04:23,200 DIVERSE RESPONSE TO THERAPY WE 9042 06:04:23,200 --> 06:04:24,760 SEE AND I THINK IT'S IMPORTANT 9043 06:04:24,760 --> 06:04:27,640 TO MAKE THESE FUNCTIONAL 9044 06:04:27,640 --> 06:04:30,760 MEASUREMENTS OPPOSED TO JUST 9045 06:04:30,760 --> 06:04:31,600 MOLECULAR MEASUREMENTS. 9046 06:04:31,600 --> 06:04:33,960 THERE'S A LOT OF WE CAN SAY 9047 06:04:33,960 --> 06:04:35,760 ABOUT THE DISEASE PHENOTYPE. 9048 06:04:35,760 --> 06:04:38,480 WITH THAT I'LL STOP BECAUSE I 9049 06:04:38,480 --> 06:04:38,960 THINK WE'RE OUT OF TIME. 9050 06:04:38,960 --> 06:04:41,160 >> YES, BUT THANK YOU SO MUCH TO 9051 06:04:41,160 --> 06:04:42,400 ALL THE SPEAKERS. 9052 06:04:42,400 --> 06:04:44,080 IT'S A WONDERFUL SESSION. 9053 06:04:44,080 --> 06:04:46,160 AND MAYBE WE CAN SQUEEZE OUT ONE 9054 06:04:46,160 --> 06:04:47,240 OR TWO QUESTIONS? 9055 06:04:47,240 --> 06:04:49,840 >> NO, I DON'T THINK SO. 9056 06:04:49,840 --> 06:04:51,040 >> PLEASE E-MAIL THE SPEAKERS IF 9057 06:04:51,040 --> 06:04:52,040 YOU HAVE FURTHER QUESTIONS. 9058 06:04:52,040 --> 06:04:53,000 >> THANK YOU VERY MUCH. 9059 06:04:53,000 --> 06:04:55,000 >> THANK YOU FOR AN EXCELLENT 9060 06:04:55,000 --> 06:04:55,880 PANEL OF SPEAKERS AND EXCELLENT 9061 06:04:55,880 --> 06:04:57,280 SESSION BUT I THINK WE NEED TO 9062 06:04:57,280 --> 06:05:00,120 MOVE ON TO OUR NEXT SESSION. 9063 06:05:00,120 --> 06:05:05,000 AND OUR NEXT TWO SPEAKERS ARE 9064 06:05:05,000 --> 06:05:06,920 GOING TO TALK ABOUT -- GIVE YOU 9065 06:05:06,920 --> 06:05:13,520 A GLIMPSE OF ONE OF OUR FLAGSHIP 9066 06:05:13,520 --> 06:05:16,720 PROGRAMS AT NIH CALLED H3 AFRICA 9067 06:05:16,720 --> 06:05:19,200 PROGRAM FOR HUMAN HEREDITY AND 9068 06:05:19,200 --> 06:05:20,600 HEALTH IN AFRICA. 9069 06:05:20,600 --> 06:05:22,320 I'M SURE MANY ARE AWARE OF THE 9070 06:05:22,320 --> 06:05:24,440 PROGRAM. 9071 06:05:24,440 --> 06:05:28,600 IT'S TO FACILITATE AN 9072 06:05:28,600 --> 06:05:31,280 AFRICAN-BASED RESEARCH APPROACH 9073 06:05:31,280 --> 06:05:33,160 TO LOOK AT DETERMINATES OF 9074 06:05:33,160 --> 06:05:37,440 DISEASE WITH THE GOAL OF 9075 06:05:37,440 --> 06:05:40,560 IMPROVING THE AFRICAN 9076 06:05:40,560 --> 06:05:40,880 POPULATION. 9077 06:05:40,880 --> 06:05:43,200 IT'S A PROGRAM THAT'S HAD 9078 06:05:43,200 --> 06:05:45,120 SUBSTANTIAL INVESTMENT FROM NIH 9079 06:05:45,120 --> 06:05:47,200 AND FROM AFRICA AND AFRICAN 9080 06:05:47,200 --> 06:05:51,600 RESEARCHERS AND AFRICAN 9081 06:05:51,600 --> 06:05:52,280 POPULATIONS. 9082 06:05:52,280 --> 06:05:53,720 AND HAS BEEN A TREMENDOUSLY 9083 06:05:53,720 --> 06:05:56,840 SUCCESSFUL PROGRAM AND I'D LIKE 9084 06:05:56,840 --> 06:06:01,480 THE NEXT TWO SPEAKERS BOTH VERY 9085 06:06:01,480 --> 06:06:03,240 DISTINGUISHED SPEAKERS 9086 06:06:03,240 --> 06:06:08,040 DR. SOLOMON AQUAH FROM THE DEAN 9087 06:06:08,040 --> 06:06:09,760 OF LIFE SCIENCES AT THE 9088 06:06:09,760 --> 06:06:15,200 UNIVERSITY OF GHANA AND 9089 06:06:15,200 --> 06:06:18,920 DR. AMBROSE WONKAM THE RECENTLY 9090 06:06:18,920 --> 06:06:22,600 MINTED PROFESSOR OF GENETICS AND 9091 06:06:22,600 --> 06:06:24,640 MEDICINE AT THE DEPARTMENT OF 9092 06:06:24,640 --> 06:06:27,240 GENETICS AT JOHNS HOPKINS 9093 06:06:27,240 --> 06:06:27,520 UNIVERSITY. 9094 06:06:27,520 --> 06:06:32,760 SO I THINK THE FIRST SPEAKER IS 9095 06:06:32,760 --> 06:06:33,080 SOLOMON. 9096 06:06:33,080 --> 06:06:33,880 IT'S ALL YOURS. 9097 06:06:33,880 --> 06:06:39,720 >> YOU HAVE MY SLIDES. 9098 06:06:39,720 --> 06:06:41,320 DO I HAVE TO SHOW MY SCREEN? 9099 06:06:41,320 --> 06:06:43,080 >> NO, IT'S ON. 9100 06:06:43,080 --> 06:06:45,000 >> THANK YOU FOR THE LOVELY 9101 06:06:45,000 --> 06:06:45,320 INTRODUCTION. 9102 06:06:45,320 --> 06:06:46,480 THANK YOU, COLLEAGUES. 9103 06:06:46,480 --> 06:06:51,760 I'M GOING TO TALK TO YOU ABOUT 9104 06:06:51,760 --> 06:07:02,240 THE COHORT FOR RESEARCH IN 9105 06:07:03,520 --> 06:07:13,680 SICKLE CELL DISEASE. 9106 06:07:13,680 --> 06:07:15,760 >> I'M GOING THIS FOR THE SAKE 9107 06:07:15,760 --> 06:07:18,160 OF THOSE NOT FAMILIAR WITH IT 9108 06:07:18,160 --> 06:07:19,520 AND PARTICULARLY STUDENTS. 9109 06:07:19,520 --> 06:07:25,160 WE ALL KNOW IT'S A GENETIC 9110 06:07:25,160 --> 06:07:34,120 DISORDER WITH A MUTATION AND 9111 06:07:34,120 --> 06:07:39,320 THERE'S A SINGLE POINT MUTATION 9112 06:07:39,320 --> 06:07:41,160 IN THE HEMOGLOBIN GENE THAT IS 9113 06:07:41,160 --> 06:07:43,480 THE MOLECULAR GENETICS FOR 9114 06:07:43,480 --> 06:07:45,280 SICKLE CELL DISEASE. 9115 06:07:45,280 --> 06:07:48,960 WE DO KNOW THAT THIS CHANGE IN 9116 06:07:48,960 --> 06:07:53,120 THE NUCLEOTIDE LEADS TO A CHANGE 9117 06:07:53,120 --> 06:07:56,160 IN THE SEQUENCE WHERE THE ACID 9118 06:07:56,160 --> 06:07:58,600 IS SUBSTITUTE AND THE 9119 06:07:58,600 --> 06:08:03,200 POLYMERIZATION WHICH WE HEARD 9120 06:08:03,200 --> 06:08:05,120 AND GO BACK ONE, AND THE 9121 06:08:05,120 --> 06:08:07,240 PRESENTATION ON THE 9122 06:08:07,240 --> 06:08:10,160 POLYMERIZATION KINETICS LEADS TO 9123 06:08:10,160 --> 06:08:11,800 THE FORMATION OF SICKLE CELL VCs 9124 06:08:11,800 --> 06:08:15,240 AND FROM THE BIOLOGICAL POINT OF 9125 06:08:15,240 --> 06:08:20,960 VIEW WE KNOW TWO BASIC ANOMALIES 9126 06:08:20,960 --> 06:08:22,600 THERE'S THE PROPENSITY TO STICK 9127 06:08:22,600 --> 06:08:24,280 TO EACH OTHER. 9128 06:08:24,280 --> 06:08:27,760 WE HEARD SEVERAL TALKS ABOUT 9129 06:08:27,760 --> 06:08:28,160 POLYMERIZATION. 9130 06:08:28,160 --> 06:08:32,360 AS THE TWO CELLULAR ANOMALIES WE 9131 06:08:32,360 --> 06:08:34,000 BASICALLY BLAME FOR A VARIETY OF 9132 06:08:34,000 --> 06:08:36,160 CLINICAL COMPLICATIONS THAT 9133 06:08:36,160 --> 06:08:38,160 AFFECT EVENTUALLY EVERY ORGAN 9134 06:08:38,160 --> 06:08:43,400 SYSTEM IN SICKLE CELL PATIENTS. 9135 06:08:43,400 --> 06:08:52,000 ABOUT 10 YEARS AGO MY LAB WAS 9136 06:08:52,000 --> 06:08:55,360 INTRIGUED BY THE BASIC QUESTION 9137 06:08:55,360 --> 06:08:59,640 THEY HAD WAS HOW IT PROMOTES 9138 06:08:59,640 --> 06:09:00,920 ACUTE COMPLICATIONS OF SICKLE 9139 06:09:00,920 --> 06:09:03,160 CELL DISEASE AND WHAT ARE THE 9140 06:09:03,160 --> 06:09:03,440 MECHANISMS. 9141 06:09:03,440 --> 06:09:04,480 WE USED MOUSE MODEL TO TRY TO 9142 06:09:04,480 --> 06:09:13,800 UNDERSTAND THIS. 9143 06:09:13,800 --> 06:09:16,600 OUR INTEREST WAS ON THE STUDY 9144 06:09:16,600 --> 06:09:19,680 THAT SHOWED INDIVIDUALS WHO HAVE 9145 06:09:19,680 --> 06:09:21,120 THIS AT THE TIME OF PRESENTATION 9146 06:09:21,120 --> 06:09:24,000 HAVE A SUDDEN DROP IN HEMOGLOBIN 9147 06:09:24,000 --> 06:09:28,600 WHICH WE INTERPRETED TO MEAN 9148 06:09:28,600 --> 06:09:38,560 ACUTE INTRAVASCULAR HEMOLYSIS 9149 06:09:38,560 --> 06:09:41,880 AND AT THE TIME THE PARADIGM 9150 06:09:41,880 --> 06:09:45,040 WITH RESPECT TO BIOLOGY IN 9151 06:09:45,040 --> 06:09:51,120 SICKLE CELL DISEASE WAS 9152 06:09:51,120 --> 06:10:01,600 INJECTING SICKLE CELL MICE 9153 06:10:02,520 --> 06:10:04,640 INTRAPERITONEAL AND THE OUTCOME 9154 06:10:04,640 --> 06:10:08,480 WAS QUITE DRAMATIC. 9155 06:10:08,480 --> 06:10:15,200 WE DISCOVERED THAT WHEN YOU 9156 06:10:15,200 --> 06:10:17,280 INFUSE PURIFIED HEME WITHIN A 9157 06:10:17,280 --> 06:10:19,200 SHORT PERIOD THE SLIDE YOU SEE 9158 06:10:19,200 --> 06:10:25,760 IS A CONTROL ANIMAL INFUSED WITH 9159 06:10:25,760 --> 06:10:30,880 SALINE AND AN EXPERIMENTAL MOUSE 9160 06:10:30,880 --> 06:10:32,720 INFUSED WITH A BODY WEIGHT OF 9161 06:10:32,720 --> 06:10:34,520 HEME AND YOU SEE CLEAR EVIDENCE 9162 06:10:34,520 --> 06:10:37,520 OF THE MASSIVE INJURY TO THE 9163 06:10:37,520 --> 06:10:40,400 LUNG OF THE MICE AND WITHOUT 9164 06:10:40,400 --> 06:10:43,200 GOING THROUGH EXTENSIVE DETAILS 9165 06:10:43,200 --> 06:10:44,720 WE ARE ABLE TO STUDY THIS IN 9166 06:10:44,720 --> 06:10:50,520 MORE DETAIL USING A VARIETY OF 9167 06:10:50,520 --> 06:10:55,240 TOOLS INCLUDING THE PULSE OX AS 9168 06:10:55,240 --> 06:10:56,440 WELL AS MEASURING OXYGEN AND 9169 06:10:56,440 --> 06:11:00,960 LOOKED AT GENETICS AND BONE 9170 06:11:00,960 --> 06:11:01,440 MARROW EXPERIMENTS TO 9171 06:11:01,440 --> 06:11:06,280 DEMONSTRATE CONCLUSIVELY THAT AN 9172 06:11:06,280 --> 06:11:11,200 S OF THIS IN THE MOUSE TRIGGERED 9173 06:11:11,200 --> 06:11:13,840 CLASSICAL ACUTE LUNG INJURY. 9174 06:11:13,840 --> 06:11:24,360 SOW THIS LED US TO DEVELOP A 9175 06:11:27,280 --> 06:11:27,760 CONCEPTUAL MODEL THROUGH 9176 06:11:27,760 --> 06:11:31,440 HEMOLYSIS AND ACTED THROUGH THE 9177 06:11:31,440 --> 06:11:33,440 SIGNALLING CAUSED ACUTE LUNG 9178 06:11:33,440 --> 06:11:35,120 INJURY AND THIS WAS REMINISCENT 9179 06:11:35,120 --> 06:11:40,640 OF THE RAPIDLY EVOLVING SIN 9180 06:11:40,640 --> 06:11:44,080 DROLL THAT COLLEAGUES PROPERTY 9181 06:11:44,080 --> 06:11:44,760 REPORTED AND SICKLE CELL DISEASE 9182 06:11:44,760 --> 06:11:47,000 PATIENTS WHEN ADMITTED TO THE 9183 06:11:47,000 --> 06:11:51,760 HOSPITAL WITH ACS DIE WITHIN 24 9184 06:11:51,760 --> 06:11:54,960 TO 72 HOURS AND OUR MOUSE MODEL 9185 06:11:54,960 --> 06:12:00,680 WE THOUGHT WAS A GOOD REPLICA OF 9186 06:12:00,680 --> 06:12:08,000 THE CLINICAL PHENOM NONE AND IF 9187 06:12:08,000 --> 06:12:11,600 THIS WAS -- PHENOMENON AND THIS 9188 06:12:11,600 --> 06:12:15,200 WIS ENOUGH TO CAUSE ACUTE 9189 06:12:15,200 --> 06:12:21,760 DISEASE THERE'S DEFENSE 9190 06:12:21,760 --> 06:12:22,640 MECHANISMS. 9191 06:12:22,640 --> 06:12:26,880 THESE INCLUDE HAPTO GLOBIN AND 9192 06:12:26,880 --> 06:12:28,840 OTHER MADE NATURALLY ARE AN AND 9193 06:12:28,840 --> 06:12:30,600 A HALF DEFENSE MECHANISM TO 9194 06:12:30,600 --> 06:12:32,240 PROTECT AGAINST THE DELETERIOUS 9195 06:12:32,240 --> 06:12:33,560 AFFECT OF HEME. 9196 06:12:33,560 --> 06:12:37,480 WE'VE GONE ON TO DO A LOT OF 9197 06:12:37,480 --> 06:12:39,880 STUDIES INCLUDING HEMOPEXIN. 9198 06:12:39,880 --> 06:12:42,880 AND WHAT I'LL SHOW WITH RESPECT 9199 06:12:42,880 --> 06:12:44,680 TO THE H3 AFRICA PROJECT WE 9200 06:12:44,680 --> 06:12:51,200 TRIED TO EXPLORE THE GENETICS OF 9201 06:12:51,200 --> 06:12:59,760 THE HEMOLYSIS IN THIS 9202 06:12:59,760 --> 06:13:06,560 SICKLEGENAFRICA COHORT. 9203 06:13:06,560 --> 06:13:10,600 SO THIS IS ESSENTIALLY THE 9204 06:13:10,600 --> 06:13:13,880 CONCEPTUAL FRAMEWORK. 9205 06:13:13,880 --> 06:13:16,600 WE APPRECIATE THE HEMOLYSIS CAN 9206 06:13:16,600 --> 06:13:19,400 CAUSE NOT ONLY ACUTE INJURY TO 9207 06:13:19,400 --> 06:13:21,960 THE LUNG AND AS I'LL SHOW IN A 9208 06:13:21,960 --> 06:13:27,200 SECOND, ACUTE INJURY TO THE 9209 06:13:27,200 --> 06:13:27,440 KIDNEYS. 9210 06:13:27,440 --> 06:13:35,400 WE HAVE DATA AND WE ALSO KNOW NO 9211 06:13:35,400 --> 06:13:38,720 PATIENTS HAVE THE SAME HEMOLYSIS 9212 06:13:38,720 --> 06:13:40,000 AND THE GOAL OF THE PROJECT WAS 9213 06:13:40,000 --> 06:13:47,200 TO UNDERSTAND THE GENOMICS THAT 9214 06:13:47,200 --> 06:13:50,400 INFLUENCED THE VARIABLE CAPACITY 9215 06:13:50,400 --> 06:13:58,320 AND THIS WAS ORGANIZED WITH THE 9216 06:13:58,320 --> 06:14:02,720 GENOMICS OF MODIFYING PROTEINS 9217 06:14:02,720 --> 06:14:04,360 AS WELL AS THE CALL FOR THE WORK 9218 06:14:04,360 --> 06:14:10,400 AND QUE HAVE COLLABORATORS IN 9219 06:14:10,400 --> 06:14:11,200 NIGERIA AND IT'S A 9220 06:14:11,200 --> 06:14:15,960 CARDIOVASCULAR PROJECT WHERE FOR 9221 06:14:15,960 --> 06:14:22,560 THE FIRST TIME WE GOT ECHOS ON 9222 06:14:22,560 --> 06:14:23,600 THE ADULT PATIENTS AND LOOKING 9223 06:14:23,600 --> 06:14:27,160 AT WHAT WE FIND IN PROJECT 1. 9224 06:14:27,160 --> 06:14:29,000 PROJECT 2 FOCUSSED ON THE 9225 06:14:29,000 --> 06:14:32,480 GENOMICS OF SEVERE MALARIA AND 9226 06:14:32,480 --> 06:14:33,240 SICKLE CELL PATIENTS. 9227 06:14:33,240 --> 06:14:34,360 WE HAD DIFFICULTY IN TERMS OF 9228 06:14:34,360 --> 06:14:39,200 THE NUMBER OF PATIENTS. 9229 06:14:39,200 --> 06:14:47,440 THAT CHANGED INTO AN EX VIVO 9230 06:14:47,440 --> 06:14:51,360 STUDY AND THE BIO INFORMATICS 9231 06:14:51,360 --> 06:14:52,880 HAS BEEN DONE IN PITTSBURGH AND 9232 06:14:52,880 --> 06:14:59,200 IN CAPE TOWN. 9233 06:14:59,200 --> 06:15:02,000 THIS IS WHERE YOU LOOK AT FROM 9234 06:15:02,000 --> 06:15:06,520 THE STRUCTURE IN TERMS OF THE 9235 06:15:06,520 --> 06:15:07,640 SCIENCE FOR THE SICKLEGENAFRICA 9236 06:15:07,640 --> 06:15:17,800 NETWORK. 9237 06:15:37,280 --> 06:15:38,480 YOU'RE LOOKING AT THE STUDY 9238 06:15:38,480 --> 06:15:44,440 DESIGN OF THE NETWORK. 9239 06:15:44,440 --> 06:15:51,400 YOU CAN SEE FROM THE VERY TOP 9240 06:15:51,400 --> 06:15:54,800 OVER ALL SICKLEGENAFRICA IS A 9241 06:15:54,800 --> 06:15:56,720 PROSPECTIVE OBSERVATIONAL STUDY 9242 06:15:56,720 --> 06:16:00,200 OF PROTECTIVE PROTEINS AND 9243 06:16:00,200 --> 06:16:01,280 DAMAGE IN SICKLE CELL DISEASE. 9244 06:16:01,280 --> 06:16:06,920 WE START WITH AN ETHICS APPROVAL 9245 06:16:06,920 --> 06:16:09,720 AND TRAINING OF TO THE STAFF 9246 06:16:09,720 --> 06:16:10,960 INVOLVED AND THERE'S SIX 9247 06:16:10,960 --> 06:16:14,480 CLINICAL SITES WE ENROLLED 9248 06:16:14,480 --> 06:16:17,880 PATIENTS OVER 50 PATIENTS IN 9249 06:16:17,880 --> 06:16:19,200 TERMS OF RESEARCH INVESTIGATORS 9250 06:16:19,200 --> 06:16:24,000 IN DIFFERENT LEVELS INVOLVED IN 9251 06:16:24,000 --> 06:16:26,880 THE PROJECT AND WE'RE MAKING 9252 06:16:26,880 --> 06:16:28,920 SURE THE PATIENTS AND THEIR 9253 06:16:28,920 --> 06:16:30,760 FAMILIES UNDERSTAND WHAT IT IS 9254 06:16:30,760 --> 06:16:34,360 WE WANT TO DO SO ONCE WE GET 9255 06:16:34,360 --> 06:16:36,840 APPROVAL AND GET COMMUNITY 9256 06:16:36,840 --> 06:16:38,040 ENGAGEMENT DONE AND I'LL SHOW 9257 06:16:38,040 --> 06:16:39,520 YOU SLIDES WE BEGAN THE PROCESS 9258 06:16:39,520 --> 06:16:41,720 OF ENROLLING PATIENTS. 9259 06:16:41,720 --> 06:16:46,320 OUR TARGET WAS TO ENROLL 7,000 9260 06:16:46,320 --> 06:16:49,240 SECOND HALF PATIENTS, ADULTS AND 9261 06:16:49,240 --> 06:16:51,320 CHILDREN WITHIN THREE YEARS, TWO 9262 06:16:51,320 --> 06:16:53,080 TO THREE YEARS. 9263 06:16:53,080 --> 06:16:55,040 COVID EXTENDED THAT A BIT AND 9264 06:16:55,040 --> 06:16:59,400 YOU CAN SEE THE FLOW DIAGRAM. 9265 06:16:59,400 --> 06:17:01,320 AND PATIENTS ENROLLED IF THEY 9266 06:17:01,320 --> 06:17:04,040 PRESENT WITH ACUTE ILLNESS THEY 9267 06:17:04,040 --> 06:17:05,560 ENROLLED SAMPLES ARE TAKEN. 9268 06:17:05,560 --> 06:17:08,680 WE HAVE TO VERIFY EVERY PATIENT 9269 06:17:08,680 --> 06:17:10,640 IS ACTUALLY A SICKLE CELL 9270 06:17:10,640 --> 06:17:14,160 PATIENT AND WE DO THAT AND YOU 9271 06:17:14,160 --> 06:17:15,640 CAN FOLLOW THE ARROW GOING DOWN 9272 06:17:15,640 --> 06:17:21,160 TO WHERE WE ARE NOW. 9273 06:17:21,160 --> 06:17:31,400 WE ARE ESSENTIAL LY IN OUR STUD. 9274 06:17:31,400 --> 06:17:41,800 WE ARE AT THE TAIL END. 9275 06:17:51,720 --> 06:17:53,560 AN IMPORTANT COMPONENT IS THE 9276 06:17:53,560 --> 06:17:57,440 FRAMEWORK AND WE FOCUS ON 9277 06:17:57,440 --> 06:17:59,520 AUTONOMY AND DUTY OF CARE AND 9278 06:17:59,520 --> 06:18:06,800 THE PATIENT'S BEST INTEREST. 9279 06:18:06,800 --> 06:18:10,640 AND THIS IS LED BY DR. KOFI 9280 06:18:10,640 --> 06:18:13,640 ANNAN A CLINICAL PSYCHOLOGIST 9281 06:18:13,640 --> 06:18:18,800 AND HAVE DONE COMMUNITY 9282 06:18:18,800 --> 06:18:29,240 ENGAGEMENT AND THERE'S ABOUT 20% 9283 06:18:29,240 --> 06:18:34,640 OF OUR PARTICIPANTS ARE UNABLE 9284 06:18:34,640 --> 06:18:40,520 OR DO NOT GIVE CONTENT AND THEY 9285 06:18:40,520 --> 06:18:41,880 SAID THEY'LL SPEAK WITH THEIR 9286 06:18:41,880 --> 06:18:46,440 FAMILY AND COME BACK AND THAT'S 9287 06:18:46,440 --> 06:18:48,200 IMPORTANT TO RESPECT. 9288 06:18:48,200 --> 06:18:52,640 NEARLY 98% OF OUR PARTICIPANTS 9289 06:18:52,640 --> 06:18:55,320 WANT RESULTS RETURNED TO THEM 9290 06:18:55,320 --> 06:18:58,360 EVEN IF UNRELATED TO THE 9291 06:18:58,360 --> 06:19:03,160 RESEARCH QUESTION AND ETHICS SAY 9292 06:19:03,160 --> 06:19:09,600 IS A MAJOR PIECE OF WHAT WE DO 9293 06:19:09,600 --> 06:19:20,120 ENGAGE THE COMMUNITY ACTIVELY. 9294 06:19:35,080 --> 06:19:37,320 THIS IS THE COMMUNITY ENGAGEMENT 9295 06:19:37,320 --> 06:19:39,200 WE DID BEFORE WE DRAW THE FIRST 9296 06:19:39,200 --> 06:19:40,160 BLOOD SAMPLE. 9297 06:19:40,160 --> 06:19:43,200 THIS IS THE PROJECT IN APRIL 9298 06:19:43,200 --> 06:19:46,960 2018 AND WHAT YOU SEE HERE ARE 9299 06:19:46,960 --> 06:19:52,320 COMMUNITY AND RELIGIOUS LEADERS 9300 06:19:52,320 --> 06:19:59,160 AND PATIENTS AND PARENTS TO 9301 06:19:59,160 --> 06:20:00,320 DISCUSS WHAT SICKLEGENAFRICA WAS 9302 06:20:00,320 --> 06:20:02,280 ALL ABOUT AND TOOK THAT ON THE 9303 06:20:02,280 --> 06:20:05,920 ROAD SHOW TO THE SIX 9304 06:20:05,920 --> 06:20:06,520 PARTICIPATING SITES. 9305 06:20:06,520 --> 06:20:15,200 WE WENT TO GHANA AND THEN WENT 9306 06:20:15,200 --> 06:20:21,400 TO LAGOS AND THEN TANZANIA. 9307 06:20:21,400 --> 06:20:23,440 AND THIS WAS IMPORTANT TO MAKE 9308 06:20:23,440 --> 06:20:25,400 SURE PATIENT AND THEIR FAMILIES 9309 06:20:25,400 --> 06:20:29,200 UNDERSTOOD IT IN TERMS OF THE 9310 06:20:29,200 --> 06:20:30,440 FACT THERE WOULDN'T BE IMMEDIATE 9311 06:20:30,440 --> 06:20:32,080 BENEFIT TO THE PATIENTS IN THE 9312 06:20:32,080 --> 06:20:34,120 STUDY AND REGARDLESS OF THAT 9313 06:20:34,120 --> 06:20:36,000 THERE WAS A LOT OF ENTHUSIASM 9314 06:20:36,000 --> 06:20:37,760 FROM PATIENTS AND PARENTS TO BE 9315 06:20:37,760 --> 06:20:47,640 PART OF THE STUDY. 9316 06:20:47,640 --> 06:20:51,800 AS OF 2021 WE SURPASSED OUR 9317 06:20:51,800 --> 06:20:53,840 ORIGINAL TARGET OF 7,000 9318 06:20:53,840 --> 06:20:54,120 PATIENTS. 9319 06:20:54,120 --> 06:20:57,920 WE ENROLLED 3,901 CHILDREN. 9320 06:20:57,920 --> 06:21:01,080 THE CITIES WITH THE NUMBER OF 9321 06:21:01,080 --> 06:21:07,200 PARTICIPANTS THAT HAVE BEEN 9322 06:21:07,200 --> 06:21:13,800 ENROLLED AND LOOKING AT THE 9323 06:21:13,800 --> 06:21:21,200 CLINIC STARTED IN KUMASI 9324 06:21:21,200 --> 06:21:28,120 FOLLOWED BY THE CLINIC IN DAR ES 9325 06:21:28,120 --> 06:21:31,720 SALAAM AND ALL RECRUITMENT WAS 9326 06:21:31,720 --> 06:21:35,960 WITH RED CUP DATA AND WE 9327 06:21:35,960 --> 06:21:41,520 ENROLLED 3,108 ADULTS WHICH HAS 9328 06:21:41,520 --> 06:21:45,680 HAD ADULT SICKLE CELL CLINICS 9329 06:21:45,680 --> 06:21:48,960 AND THAT'S LEADING THE WAY. 9330 06:21:48,960 --> 06:21:51,560 BY NOVEMBER OF LAST YEAR WE 9331 06:21:51,560 --> 06:21:53,240 ENROLLED OVER 7,000 PATIENTS 9332 06:21:53,240 --> 06:21:55,280 INTO THIS STUDY MAKING IT THE 9333 06:21:55,280 --> 06:21:56,800 LARGEST COHORT STUDY OF SICKLE 9334 06:21:56,800 --> 06:22:05,040 CELL DISEASE I'M AWARE OF. 9335 06:22:05,040 --> 06:22:06,400 JUST A COUPLE OF THINGS. 9336 06:22:06,400 --> 06:22:08,800 THIS IS THE ADULT COHORT AND IT 9337 06:22:08,800 --> 06:22:10,280 WAS INTERESTING TO US AT THE 9338 06:22:10,280 --> 06:22:11,600 TIME OF ENROLLMENT HOW'S 9339 06:22:11,600 --> 06:22:12,920 PATIENTS WERE MANAGING THEIR 9340 06:22:12,920 --> 06:22:13,120 PAIN. 9341 06:22:13,120 --> 06:22:15,200 YOU CAN SEE THE DRUGS PATIENTS 9342 06:22:15,200 --> 06:22:18,400 WERE USING TO MANAGE THEIR PAIN. 9343 06:22:18,400 --> 06:22:19,120 QUITE INTERESTING IN THE SLIDE 9344 06:22:19,120 --> 06:22:21,560 AND WHEN WE LOOKED AT OTHER 9345 06:22:21,560 --> 06:22:25,240 MEDICATIONS, I WANT TO POINT TO 9346 06:22:25,240 --> 06:22:26,360 TWO MEDICATIONS. 9347 06:22:26,360 --> 06:22:29,760 IF WE LOOK AT HYDROXYUREA LESS 9348 06:22:29,760 --> 06:22:32,800 THAN 6% WERE ON THIS AND NEARLY 9349 06:22:32,800 --> 06:22:36,400 99% WERE TAKEN FOLIC ACID. 9350 06:22:36,400 --> 06:22:39,000 IT'S REALLY QUITE INTERESTING 9351 06:22:39,000 --> 06:22:41,400 WHEN PATIENTS BELIEVE AND THEY 9352 06:22:41,400 --> 06:22:44,640 HAVE ACCESS TO A DRUG THAT CAN 9353 06:22:44,640 --> 06:22:46,160 INFLUENCE THEIR DISEASE AS FOLIC 9354 06:22:46,160 --> 06:22:47,760 ACID IS BELIEVED IN THIS PART OF 9355 06:22:47,760 --> 06:22:49,080 THE WORLD TO HAVE BENEFICIAL 9356 06:22:49,080 --> 06:22:50,520 EFFECT THEY TAKE IT AND WHEN THE 9357 06:22:50,520 --> 06:22:54,480 DRUG IS UNAVAILABLE AS HYDR 9358 06:22:54,480 --> 06:22:56,760 HYDROXYUREA HAS NOT THEY CANNOT 9359 06:22:56,760 --> 06:22:58,080 TAKE IT. 9360 06:22:58,080 --> 06:22:59,720 IT SPEAKS TO PATIENT'S ATTITUDES 9361 06:22:59,720 --> 06:23:01,960 IN TERMS OF MEDICATION. 9362 06:23:01,960 --> 06:23:03,240 THEY'LL TAKE THE DRUG AND 9363 06:23:03,240 --> 06:23:04,160 WHEN -- 9364 06:23:04,160 --> 06:23:06,520 >> TWO-MINUTE WARNING. 9365 06:23:06,520 --> 06:23:07,440 >> SAY THAT AGAIN? 9366 06:23:07,440 --> 06:23:09,840 >> YOU HAVE A TWO-MINUTE 9367 06:23:09,840 --> 06:23:10,040 WARNING. 9368 06:23:10,040 --> 06:23:10,640 >> OKAY. 9369 06:23:10,640 --> 06:23:16,680 NEXT SLIDE, PLEASE. 9370 06:23:16,680 --> 06:23:17,880 AND THIS IS TO SHOW YOU WHAT 9371 06:23:17,880 --> 06:23:21,120 CONDITIONS WHERE THE PATIENTS 9372 06:23:21,120 --> 06:23:23,440 WERE BASICALLY TREATING AT THE 9373 06:23:23,440 --> 06:23:26,000 TIME OF ENROLLMENT. 9374 06:23:26,000 --> 06:23:28,680 BASED ON THE PREVIOUS SLIDE, THE 9375 06:23:28,680 --> 06:23:34,680 MAJORITY OF PATIENTS WERE 9376 06:23:34,680 --> 06:23:45,040 TREATED FOR MALARIA. 9377 06:23:45,720 --> 06:23:47,240 THERE'S A WIDE VARIATION IN THE 9378 06:23:47,240 --> 06:23:51,000 LEVEL. 9379 06:23:51,000 --> 06:23:58,360 HERE YOU SEE THE LEVELS OF 9380 06:23:58,360 --> 06:24:02,160 HEMOPEXIN AND THE MACROGLOBULIN 9381 06:24:02,160 --> 06:24:06,240 AND SOME ARE NEARLY A NORMAL 9382 06:24:06,240 --> 06:24:09,120 VALUE AND THE MAJORITY OF SICKLE 9383 06:24:09,120 --> 06:24:10,880 CELL PATIENTS ARE LESS AND ONE 9384 06:24:10,880 --> 06:24:21,280 FOR THE OTHER IT'S THE OPPOSITE. 9385 06:24:21,280 --> 06:24:24,480 BOTH PROTEINS BIND AND DEPENDING 9386 06:24:24,480 --> 06:24:25,640 ON WHICH THEY'LL END UP IN THE 9387 06:24:25,640 --> 06:24:30,840 LIVER OR KIDNEY. 9388 06:24:30,840 --> 06:24:40,680 WE ASKED AND LOOKING AT THE 9389 06:24:40,680 --> 06:24:45,200 SEVERITY OF HEMOLYSIS AND WE SAW 9390 06:24:45,200 --> 06:24:49,840 A NICE CORRELATION AND TRAINED 9391 06:24:49,840 --> 06:24:56,040 THE RATIO AND WE SEE IT BINDS TO 9392 06:24:56,040 --> 06:25:00,440 THE KIDNEY AND THIS GIVES 9393 06:25:00,440 --> 06:25:01,080 CONFIDENCE TO PROBE FURTHER IN 9394 06:25:01,080 --> 06:25:06,880 MICE. 9395 06:25:06,880 --> 06:25:10,240 HERE WE ASKED IF THERE'S AN 9396 06:25:10,240 --> 06:25:11,600 EXCESS OF HEME IN THE SICKLE 9397 06:25:11,600 --> 06:25:13,400 CELL MOUSE WHERE WILL THE HEME 9398 06:25:13,400 --> 06:25:13,560 GO? 9399 06:25:13,560 --> 06:25:17,280 YOU CAN SEE THE MAJORITY OF THE 9400 06:25:17,280 --> 06:25:19,240 EXCESS HEME ENDS UP IN THE 9401 06:25:19,240 --> 06:25:25,680 LIVER. 9402 06:25:25,680 --> 06:25:26,720 AND EXCESS HEME GOES TO THE 9403 06:25:26,720 --> 06:25:27,360 KIDNEY RATHER THAN GOING TO THE 9404 06:25:27,360 --> 06:25:34,680 LIVER. 9405 06:25:34,680 --> 06:25:36,560 AND WE MEASURED THE FILTRATION 9406 06:25:36,560 --> 06:25:40,080 RATE AND YOU CAN SEE AT BASELINE 9407 06:25:40,080 --> 06:25:42,280 THE MOUSE MEASURED THE GFR AND 9408 06:25:42,280 --> 06:25:44,040 WAITED A COUPLE DAYS AND 9409 06:25:44,040 --> 06:25:45,760 CHALLENGED IT WITH HEME. 9410 06:25:45,760 --> 06:25:47,800 THERE'S THIS IS A LOW DOSE OF 9411 06:25:47,800 --> 06:25:49,200 HEME THAT DOESN'T CAUSE ACUTE 9412 06:25:49,200 --> 06:25:50,400 LUNG INJURY BUT YOU WOULD KNOW 9413 06:25:50,400 --> 06:25:53,280 IF THE MOUSE HAS BEEN CHALLENGED 9414 06:25:53,280 --> 06:25:55,280 AND DOING IT 48 HOURS AFTER THE 9415 06:25:55,280 --> 06:25:57,160 HEME CHALLENGE IS NO DIFFERENCE 9416 06:25:57,160 --> 06:26:00,160 AND WE CAN SEE A CLEAR 9417 06:26:00,160 --> 06:26:02,800 DIFFERENCE THE SS MOUSE HAS AN 9418 06:26:02,800 --> 06:26:13,040 IMPAIRED GFR. 9419 06:26:21,600 --> 06:26:24,160 AND IMPORTANT TO NOTE THAT WE 9420 06:26:24,160 --> 06:26:25,960 BASICALLY FOLLOWED THIS AVENUE 9421 06:26:25,960 --> 06:26:29,640 OF RESEARCH QUESTION BASED ON 9422 06:26:29,640 --> 06:26:32,640 OUR DATA IN THE SINGLE 9423 06:26:32,640 --> 06:26:35,240 SICKLEGENAFRICA COHORT WHERE WE 9424 06:26:35,240 --> 06:26:40,000 SAW AN ASSOCIATION BETWEEN 9425 06:26:40,000 --> 06:26:43,560 HEMOPEXIN DEFICIENT AND MARKERS 9426 06:26:43,560 --> 06:26:47,240 AND CAN DEMONSTRATE WITH MOUSE 9427 06:26:47,240 --> 06:26:55,360 MODELS AN EXCESS HEME LEADS TO 9428 06:26:55,360 --> 06:26:56,960 ACUTE KIDNEY INJURY AS THE BASIS 9429 06:26:56,960 --> 06:26:59,920 FOR ACUTE AKI IN SICKLE CELL 9430 06:26:59,920 --> 06:27:10,080 DISEASE. 9431 06:27:23,760 --> 06:27:28,680 AND TO SUMMARIZE WE HAVE S WITH 9432 06:27:28,680 --> 06:27:34,600 CLINICAL DATA AND BIOLOGICAL 9433 06:27:34,600 --> 06:27:37,560 SAMPLES STORED AND 99% OF THE 9434 06:27:37,560 --> 06:27:39,240 COHORT HAVE GIVEN BROAD CONSENT 9435 06:27:39,240 --> 06:27:40,720 FOR THE USE OF THEIR DATA AND 9436 06:27:40,720 --> 06:27:51,200 SAMPLES FOR FUTURE STUDIES. 9437 06:27:53,680 --> 06:27:57,400 AND THERE'S INCIDENTAL FINDINGS 9438 06:27:57,400 --> 06:27:58,560 WHETHER OR NOT TREATMENT IS 9439 06:27:58,560 --> 06:28:02,600 AVAILABLE AND BELIEVE THE STUDY 9440 06:28:02,600 --> 06:28:03,640 HELPS TO IDENTIFY SICKLE CELL 9441 06:28:03,640 --> 06:28:07,240 DISEASE AS A RISK FACTOR FOR 9442 06:28:07,240 --> 06:28:17,600 ACUTE KIDNEY INJURY. 9443 06:28:20,480 --> 06:28:25,520 THERE'S A TEACHING HOSPITAL AND 9444 06:28:25,520 --> 06:28:34,600 THE INSTITUTIONS IN LAGOS AND 9445 06:28:34,600 --> 06:28:36,120 THEN OF COURSE THE HISTORY OF 9446 06:28:36,120 --> 06:28:37,360 PITTSBURGH. 9447 06:28:37,360 --> 06:28:39,440 YOU CAN SEE THE FUNDING THAT'S 9448 06:28:39,440 --> 06:28:40,400 SUPPORTED A LOT OF THIS WORK 9449 06:28:40,400 --> 06:28:42,600 OVER THE YEARS. 9450 06:28:42,600 --> 06:28:44,920 >> THANK YOU, GREAT TALK. 9451 06:28:44,920 --> 06:28:47,120 I THINK THERE'S XENTS ON THE 9452 06:28:47,120 --> 06:28:50,240 CHAT BUT YOU CAN RESPOND TO 9453 06:28:50,240 --> 06:28:50,440 THEM. 9454 06:28:50,440 --> 06:28:54,440 SORRY, WE NEED TO MOVE ON TO 9455 06:28:54,440 --> 06:28:54,680 AMBROSE. 9456 06:28:54,680 --> 06:28:58,680 HE'S GOING TO TALK ABOUT WHY WE 9457 06:28:58,680 --> 06:29:01,720 SHOULD INVEST IN GENOMIC 9458 06:29:01,720 --> 06:29:01,960 VARIATION. 9459 06:29:01,960 --> 06:29:12,200 DR. WONKAM. 9460 06:29:20,120 --> 06:29:22,720 >> THANK YOU FOR THE INVITATION. 9461 06:29:22,720 --> 06:29:28,720 TODAY MY ROLE IS SIMPLE. 9462 06:29:28,720 --> 06:29:32,240 I 9463 06:29:32,240 --> 06:29:42,760 >> LET ME SWAP THE PRESENTERS. 9464 06:29:44,800 --> 06:29:55,360 >> AND MANY WERE COLONIZED IN 9465 06:29:55,360 --> 06:29:58,680 EUROPE AND ASIA. 9466 06:29:58,680 --> 06:30:03,760 IT MADE THE GENOME MORE VITAL IN 9467 06:30:03,760 --> 06:30:04,000 AFRICA. 9468 06:30:04,000 --> 06:30:07,680 AFRICA FOR EXAMPLE, THE APPROACH 9469 06:30:07,680 --> 06:30:15,200 I'M SURE THE EVALUATION WAS NOT 9470 06:30:15,200 --> 06:30:15,400 PRESENT. 9471 06:30:15,400 --> 06:30:25,960 WE KNOW SOME HAVE BEEN LOOKED AT 9472 06:30:27,280 --> 06:30:31,480 AND THEY MOVED TO EUROPE AND TO 9473 06:30:31,480 --> 06:30:36,720 ASIA AND WHY IS THIS IMPORTANT? 9474 06:30:36,720 --> 06:30:38,600 THIS IS ONE OF THE 9475 06:30:38,600 --> 06:30:43,600 PREDISPOSITION THAT ALLOWED 9476 06:30:43,600 --> 06:30:46,720 GENETIC DISPOSITION AND THERE'S 9477 06:30:46,720 --> 06:30:50,000 ONE PORTION OF WHAT WAS MADE 9478 06:30:50,000 --> 06:30:55,280 FROM THE NEANDERTHAL AND THAT 9479 06:30:55,280 --> 06:31:01,520 CAN BE BEST INVESTIGATED IN 9480 06:31:01,520 --> 06:31:04,760 AFRICAN POPULATION FOR HEALTH 9481 06:31:04,760 --> 06:31:07,240 AND DISEASE. 9482 06:31:07,240 --> 06:31:16,760 AND ONLY 2% OF AFRICAN ANCESTRY 9483 06:31:16,760 --> 06:31:27,240 EXISTED IN GWAS AND THERE'S A 9484 06:31:33,000 --> 06:31:43,320 CASE OF THIS VARIANT. 9485 06:31:44,760 --> 06:31:49,360 AND THERE'S A DEVELOPMENT IN 9486 06:31:49,360 --> 06:31:51,560 VARIANTS WITH MEDICATION AND 9487 06:31:51,560 --> 06:31:53,400 ONCE THE VARIANT ASSOCIATED WITH 9488 06:31:53,400 --> 06:31:55,320 DIABETES CAN ONLY BE FOUND IN 9489 06:31:55,320 --> 06:31:55,800 AFRICA. 9490 06:31:55,800 --> 06:32:00,440 THAT MEANS THERE IS TOMORROW A 9491 06:32:00,440 --> 06:32:10,960 DRUG DEVELOPMENT AROUND THAT. 9492 06:32:12,160 --> 06:32:16,920 AND THERE'S A SERIES FOUND AND 9493 06:32:16,920 --> 06:32:19,240 REPLICATED IN 5,000 EUROPEANS 9494 06:32:19,240 --> 06:32:22,680 FROM SWEDEN AND DESPITE HAVING 9495 06:32:22,680 --> 06:32:28,000 FIVE TIMES LESS SAMPLE SIZE, 9496 06:32:28,000 --> 06:32:30,120 AFRICAN SAMPLE MORE LARGER IN 9497 06:32:30,120 --> 06:32:32,760 EFFECT AND THAT MEANS WITH MORE 9498 06:32:32,760 --> 06:32:35,280 SAMPLE, LARGE GENOMIC VARIATION 9499 06:32:35,280 --> 06:32:36,720 ALLOWED TO FIND SOMETHING 9500 06:32:36,720 --> 06:32:37,000 IMPORTANT. 9501 06:32:37,000 --> 06:32:40,040 I'LL NOW MOVE TO SINGLE GENE 9502 06:32:40,040 --> 06:32:41,480 DISORDER. 9503 06:32:41,480 --> 06:32:42,720 WE KNOW FOR SINGLE GENE DISORDER 9504 06:32:42,720 --> 06:32:46,760 THE PROFILE MAY NOT BE THE SAME. 9505 06:32:46,760 --> 06:32:54,840 THE CONDITION MAY KNOW 9506 06:32:54,840 --> 06:32:59,160 HUNTINGTON DISEASE AND ONE GENE 9507 06:32:59,160 --> 06:33:00,680 IS LOCATED. 9508 06:33:00,680 --> 06:33:05,160 ONE OF THE TOPIC OF RESEARCH 9509 06:33:05,160 --> 06:33:10,520 HERE WE FOUND THAT THE GENE THAT 9510 06:33:10,520 --> 06:33:16,080 EXPLAINS CHILDREN BORN DEF AND 9511 06:33:16,080 --> 06:33:22,720 50% WERE FROM AFRICAN ANCESTRY. 9512 06:33:22,720 --> 06:33:33,240 WE KNOW FRECH -- THAT THE NEXT 9513 06:33:35,400 --> 06:33:36,760 VOLUNTEER ALLOWS FOR INVOLVE 9514 06:33:36,760 --> 06:33:42,680 GENE DISCOVERY IN AFRICA AND 9515 06:33:42,680 --> 06:33:43,880 SOME FAMILIES DESCRIBE SEVEN 9516 06:33:43,880 --> 06:33:44,240 NOVEL GENES. 9517 06:33:44,240 --> 06:33:51,240 FOR EXAMPLE, IN THIS FAMILY WE 9518 06:33:51,240 --> 06:34:01,160 FOUND THE WAARDENBURG SYNDROME 9519 06:34:01,160 --> 06:34:03,240 AND THERE WAS MALFORMATION. 9520 06:34:03,240 --> 06:34:06,200 WE WENT BACK TO THE FAMILY AND 9521 06:34:06,200 --> 06:34:09,840 FOUND AT LEAST ONE OF THE 9522 06:34:09,840 --> 06:34:15,040 EFFECTED PERSON HAD THE 9523 06:34:15,040 --> 06:34:18,440 DISTURBANCE. 9524 06:34:18,440 --> 06:34:19,880 AND HERE'S WHERE THERE WERE 9525 06:34:19,880 --> 06:34:24,400 INVOLVE GENES FOR SOX 9 AND 9526 06:34:24,400 --> 06:34:25,920 THERE WAS MALFORMATION. 9527 06:34:25,920 --> 06:34:28,720 THIS IS A PROOF OF CONCEPT WE 9528 06:34:28,720 --> 06:34:33,080 BELIEVE AND APPLICABLE TO ALL 9529 06:34:33,080 --> 06:34:34,080 GENE DISORDER. 9530 06:34:34,080 --> 06:34:38,640 AND WE'LL FIND SOMETHING 9531 06:34:38,640 --> 06:34:38,960 UNEXPECTED. 9532 06:34:38,960 --> 06:34:44,800 WE LOOKED AT THE ALLO 9533 06:34:44,800 --> 06:34:46,400 DIFFERENTIATION AND FOUND THAT 9534 06:34:46,400 --> 06:34:55,040 THE DIFFERENCE BETWEEN ASSENCESL 9535 06:34:55,040 --> 06:34:57,640 IS NOT THE SAME AND THERE'S A 9536 06:34:57,640 --> 06:34:58,560 DIFFERENTIATION BETWEEN THOSE 9537 06:34:58,560 --> 06:35:02,480 THAT HAVE IT AND NOT SUGGESTING 9538 06:35:02,480 --> 06:35:04,720 AFRICAN POPULATION WOULD BE A 9539 06:35:04,720 --> 06:35:07,000 GOOD POPULATION TO STUDY AND 9540 06:35:07,000 --> 06:35:11,160 APPROPRIATE LANGUAGE BECAUSE IF 9541 06:35:11,160 --> 06:35:13,240 WE DON'T HEAR THEY WILL NOT 9542 06:35:13,240 --> 06:35:14,480 TALK. 9543 06:35:14,480 --> 06:35:16,520 THE REASON REASON WE SHOULD 9544 06:35:16,520 --> 06:35:17,560 INVEST IN AFRICAN POPULATIONS 9545 06:35:17,560 --> 06:35:24,040 AND THEY'RE NOT ASSOCIATED WITH 9546 06:35:24,040 --> 06:35:25,960 THIS DEVELOPMENT AND ALL THE 9547 06:35:25,960 --> 06:35:28,880 ELEMENTS, CLIMATE, ENVIRONMENT, 9548 06:35:28,880 --> 06:35:32,000 FOOD, INFECTION AND WE ARE 9549 06:35:32,000 --> 06:35:33,280 SPEAKING TO SICKLE CELL DISEASE 9550 06:35:33,280 --> 06:35:39,080 ONE TYPICAL EXAMPLE OF THE 9551 06:35:39,080 --> 06:35:43,240 ENVIRONMENT INVOLVED IN AFRICA 9552 06:35:43,240 --> 06:35:46,640 AND WE CAN LOOK AT WHAT IS 9553 06:35:46,640 --> 06:35:47,160 ASSOCIATED WITH AFRICAN 9554 06:35:47,160 --> 06:35:47,480 POPULATION. 9555 06:35:47,480 --> 06:35:52,400 THIS IS IMPORTANT. 9556 06:35:52,400 --> 06:36:02,960 WE KNOW AND THE COMBINATION OF 9557 06:36:03,280 --> 06:36:06,760 IN ANCESTRY AND MOVEMENT AND 9558 06:36:06,760 --> 06:36:09,120 AFRICAN POPULATION HAVE THE MOST 9559 06:36:09,120 --> 06:36:09,720 GENETIC ROLE. 9560 06:36:09,720 --> 06:36:14,920 AND THE LAST REASON WE SHOULD DO 9561 06:36:14,920 --> 06:36:17,200 THIS IS THROUGH H3 AFRICA HAS 9562 06:36:17,200 --> 06:36:20,520 ALLOWED TO IMPROVE THE GENETIC 9563 06:36:20,520 --> 06:36:28,720 ARCHITECTURE BY STUDYING 500 9564 06:36:28,720 --> 06:36:33,440 GENOME. 9565 06:36:33,440 --> 06:36:37,080 AND WE LOOKED AT GWAS VARIATION 9566 06:36:37,080 --> 06:36:38,720 AND I'LL SHOW HOW THIS WILL HAVE 9567 06:36:38,720 --> 06:36:44,320 AN IMPLICATION IN SICKLE CELL 9568 06:36:44,320 --> 06:36:44,520 DISEASE. 9569 06:36:44,520 --> 06:36:48,120 WE HAVE ALSO SUBJECT TO 9570 06:36:48,120 --> 06:36:49,720 VARIATION ALLOW THIS BUT I 9571 06:36:49,720 --> 06:36:58,320 BELIEVE THE GENOMICS ALLOW AND 9572 06:36:58,320 --> 06:37:02,040 I'LL ARGUE ONE IS MISSING AND 9573 06:37:02,040 --> 06:37:04,720 THE LOCI RESPONSIBLE FOR 9574 06:37:04,720 --> 06:37:07,280 EVALUATION EXPLAIN ONLY 20% 9575 06:37:07,280 --> 06:37:17,600 MAXIMUM VARIATION. 9576 06:37:18,440 --> 06:37:22,720 WE RERAN GWAS AND VALIDATED THE 9577 06:37:22,720 --> 06:37:24,200 REGION OF THE CHROMOSOME 6 BUT 9578 06:37:24,200 --> 06:37:26,520 FOUND A COUPLE LOCI. 9579 06:37:26,520 --> 06:37:31,920 ONE PRESENTED HERE AND I THINK 9580 06:37:31,920 --> 06:37:36,440 THESE ARE USED TO TRY TO MAKE 9581 06:37:36,440 --> 06:37:38,600 SURE WE HAVE THE SAME RESULT ON 9582 06:37:38,600 --> 06:37:39,520 DIFFERENT APPLICATIONS. 9583 06:37:39,520 --> 06:37:43,520 THIS IS ONE OF THE LOCI THAT 9584 06:37:43,520 --> 06:37:48,080 DESCRIBED THE GENES AND ONE THAT 9585 06:37:48,080 --> 06:37:49,320 MAKES A GOOD CANDIDATE BECAUSE 9586 06:37:49,320 --> 06:37:54,280 THE GENE IS STRONGLY REGULATED 9587 06:37:54,280 --> 06:37:57,880 IN THE RED BLOOD CELL AND OTHER 9588 06:37:57,880 --> 06:38:03,480 MODELS HAVE PRODUCTION OF RED 9589 06:38:03,480 --> 06:38:08,840 BLOOD CELL AND WE ALSO KNOW IT'S 9590 06:38:08,840 --> 06:38:16,000 ASSOCIATED WITH ERYTHROPOIESIS 9591 06:38:16,000 --> 06:38:23,960 AND WE LOOK AT THE SIMPLE MAP 9592 06:38:23,960 --> 06:38:27,640 LOOKING AT THE REGION OF THE 9593 06:38:27,640 --> 06:38:34,160 GENOME THAT IS VALID WITH THE 9594 06:38:34,160 --> 06:38:41,840 GWAS WE FOUND. 9595 06:38:41,840 --> 06:38:45,160 AND WE HAVE AN APPLICANTS AND 9596 06:38:45,160 --> 06:38:46,240 THERE'S AN INTERACTION BETWEEN 9597 06:38:46,240 --> 06:38:48,040 THE VARIANT AND THE GENES IN 9598 06:38:48,040 --> 06:38:51,240 THAT REGION AND SPECIFIC 9599 06:38:51,240 --> 06:38:53,200 ENHANCER AND ALLOWS US TO 9600 06:38:53,200 --> 06:38:58,720 IMPROVE THE CELL LINE AND MAYBE 9601 06:38:58,720 --> 06:39:03,680 ON ANIMAL MODEL. 9602 06:39:03,680 --> 06:39:08,600 A GROUP FOUND ONE GENE LAST YEAR 9603 06:39:08,600 --> 06:39:10,760 AND A DIFFERENT PATHWAY. 9604 06:39:10,760 --> 06:39:13,840 THAT'S DIFFERENT FROM WHAT WE 9605 06:39:13,840 --> 06:39:14,040 KNEW. 9606 06:39:14,040 --> 06:39:17,120 THAT MEANS THAT THESE TWO HAVE 9607 06:39:17,120 --> 06:39:22,640 SOME DISCOVERY TO GO. 9608 06:39:22,640 --> 06:39:33,040 AND I ARGUE THE AFRICAN 9609 06:39:35,320 --> 06:39:38,080 POPULATION IS INVOLVED IN THIS 9610 06:39:38,080 --> 06:39:40,160 AND THIS PATIENT HAD APPROACHES 9611 06:39:40,160 --> 06:39:45,920 THAT AFFECT THE QUALITY OF LIFE 9612 06:39:45,920 --> 06:39:49,200 AND SOME OF YOU HAVE SEEN THE 9613 06:39:49,200 --> 06:39:51,240 CONDITION AND THE CHALLENGES ARE 9614 06:39:51,240 --> 06:39:52,720 DIFFERENT IN DIFFERENT PARTS. 9615 06:39:52,720 --> 06:39:57,000 IN AFRICA WE LOOK AT TREATMENT 9616 06:39:57,000 --> 06:40:00,720 AND IN AMERICA THE LAST FEW 9617 06:40:00,720 --> 06:40:06,320 YEARS THE MORPHOLOGY HAS NOT 9618 06:40:06,320 --> 06:40:10,360 CHANGED AND AMERICA HAD 9619 06:40:10,360 --> 06:40:14,360 COMPLICATION SUBJECT TO 9620 06:40:14,360 --> 06:40:19,240 VARIATION AND THERE'S A 9621 06:40:19,240 --> 06:40:25,560 DYSFUNCTION ASSOCIATED WITH WHAT 9622 06:40:25,560 --> 06:40:31,240 SOLOMON SPOKE ABOUT AND THERE'S 9623 06:40:31,240 --> 06:40:39,240 STUDIES ON RESEARCH. 9624 06:40:39,240 --> 06:40:42,080 AND HIGH BLOOD PRESSURE IS 9625 06:40:42,080 --> 06:40:46,560 AFFECTED AND THERE'S STEMMIC 9626 06:40:46,560 --> 06:40:47,400 BLOOD PRESSURE IN SICKLE CELL 9627 06:40:47,400 --> 06:40:50,560 DISEASE ASSOCIATED WITH 9628 06:40:50,560 --> 06:40:51,000 COMPLICATION. 9629 06:40:51,000 --> 06:40:55,280 AND INVESTIGATED THOSE GENETIC 9630 06:40:55,280 --> 06:40:56,760 FACTORS ASSOCIATED WITH HIGH 9631 06:40:56,760 --> 06:40:57,640 BLOOD PRESSURE AND YOU CAN 9632 06:40:57,640 --> 06:41:00,840 PRESENT A MODEL THAT MAY PREDICT 9633 06:41:00,840 --> 06:41:01,480 COMPLICATION TO SOME OF THE 9634 06:41:01,480 --> 06:41:02,960 CARDIOVASCULAR COMPLICATION. 9635 06:41:02,960 --> 06:41:07,040 TO MY KNOWLEDGE THERE'S ONLY ONE 9636 06:41:07,040 --> 06:41:11,760 GWAS IN BLOOD PRESSURE IN SICKLE 9637 06:41:11,760 --> 06:41:15,240 CELL DISEASE. 9638 06:41:15,240 --> 06:41:20,840 AND WE LOOKED AT THE RESULT AND 9639 06:41:20,840 --> 06:41:27,560 WE HAVE AT LEAST TWO IN THE 9640 06:41:27,560 --> 06:41:32,360 SYSTOLIC BLOOD PRESSURE AND WE 9641 06:41:32,360 --> 06:41:34,040 LOOKED AT THE RELATION BETWEEN 9642 06:41:34,040 --> 06:41:38,640 THE BMI AND BLOOD PRESSURE AND 9643 06:41:38,640 --> 06:41:43,240 TO SEE IF WE CAN KEEP UP THE 9644 06:41:43,240 --> 06:41:53,560 SAME TYPE OF GENES. 9645 06:41:55,400 --> 06:41:57,640 WE SAW THE SAME ASSOCIATION. 9646 06:41:57,640 --> 06:42:02,440 IT IS POSSIBLE SOME OF THE 9647 06:42:02,440 --> 06:42:09,560 VARIANT WE FOUND ASSOCIATION 9648 06:42:09,560 --> 06:42:17,400 WITH DIABETES MILLITIS AND SOME 9649 06:42:17,400 --> 06:42:20,440 OF THE GWAS GENES WE FOUND SOME 9650 06:42:20,440 --> 06:42:27,240 WOULD BE CLOSE TO WHAT WE CAN 9651 06:42:27,240 --> 06:42:36,920 FIND AND WE LOOKED AT THE 9652 06:42:36,920 --> 06:42:47,320 VARIANT AND THE FACTORS. 9653 06:42:48,040 --> 06:42:49,920 AND WE LOOK AT DISEASE 9654 06:42:49,920 --> 06:42:53,560 PHYSIOLOGY AND WE STARTED WITH A 9655 06:42:53,560 --> 06:42:59,120 GROUP OF STUDIES AND THE SECOND 9656 06:42:59,120 --> 06:43:03,800 ONE ARE IN THEIR 40s, 50s AND 9657 06:43:03,800 --> 06:43:07,160 WHAT WE FOUND IS THAT THERE'S A 9658 06:43:07,160 --> 06:43:11,240 RARE VARIANT ASSOCIATED WITH 9659 06:43:11,240 --> 06:43:13,840 POTENTIAL PATHWAY PHYSIOLOGY AND 9660 06:43:13,840 --> 06:43:16,880 ONE INTERESTING PATHWAY WAS THE 9661 06:43:16,880 --> 06:43:18,920 ARGININE PATHWAY. 9662 06:43:18,920 --> 06:43:20,640 SUGGESTING THAT THAT PATHWAY MAY 9663 06:43:20,640 --> 06:43:25,000 BE LINKED WITH GENOMIC VARIATION 9664 06:43:25,000 --> 06:43:31,400 AND PRODUCTION OF AND ALLOW SOME 9665 06:43:31,400 --> 06:43:35,600 VARIATION AND BECAUSE OF MY 9666 06:43:35,600 --> 06:43:39,680 ANCESTRY MAY HAVE SICKLE CELL 9667 06:43:39,680 --> 06:43:42,000 DISEASE AND MAY HAVE BEEN IN THE 9668 06:43:42,000 --> 06:43:44,120 POPULATION AT LEAST 5,000 YEARS 9669 06:43:44,120 --> 06:43:46,040 AGO AND SUGGEST SICKLE CELL 9670 06:43:46,040 --> 06:43:48,160 DISEASE HAVE BEEN ASSOCIATED 9671 06:43:48,160 --> 06:43:53,760 WITH POTENTIALLY SPECIFIC 9672 06:43:53,760 --> 06:43:58,120 PRESSURE ON GENOME. 9673 06:43:58,120 --> 06:43:59,960 AND SOME OF THE VARIANTS HAVE 9674 06:43:59,960 --> 06:44:02,720 BEEN SELECTED BECAUSE OF THE 9675 06:44:02,720 --> 06:44:04,320 CONDITION AND THE SEVERITY OF 9676 06:44:04,320 --> 06:44:08,520 THE CONDITION OF THE SICKLE CELL 9677 06:44:08,520 --> 06:44:11,360 AND WE'RE NOW COMPARING THOSE 9678 06:44:11,360 --> 06:44:14,880 WITH AND WITHOUT SICKLE CELL 9679 06:44:14,880 --> 06:44:25,400 DISEASE AND IN THIS SLIDE AND 9680 06:44:28,280 --> 06:44:33,000 ASSOCIATED WITH GENOMES WE HAVE 9681 06:44:33,000 --> 06:44:34,160 NOW IN SICKLE CELL DISEASE AND 9682 06:44:34,160 --> 06:44:35,560 WE NEED TO LOOK AT THE 9683 06:44:35,560 --> 06:44:38,360 COMBINATION OF ALL THE VARIANTS 9684 06:44:38,360 --> 06:44:39,680 THAT HAVE BEEN SELECTED ON THE 9685 06:44:39,680 --> 06:44:47,200 AFRICAN CONTINENT AND THE 9686 06:44:47,200 --> 06:44:47,440 VARIATION. 9687 06:44:47,440 --> 06:44:52,760 WE KNOW THERE'S DYSFUNCTION. 9688 06:44:52,760 --> 06:45:03,320 AND WE STILL NEED TO INVESTIGATE 9689 06:45:04,360 --> 06:45:06,120 THE ACTUAL DATE OF THE 9690 06:45:06,120 --> 06:45:06,720 COMMUNICATION. 9691 06:45:06,720 --> 06:45:09,120 WHAT WILL HAPPEN BEYOND SICKLE 9692 06:45:09,120 --> 06:45:09,440 CELL DISEASE? 9693 06:45:09,440 --> 06:45:12,520 WE BELIEVE THE FOUNDATION OF THE 9694 06:45:12,520 --> 06:45:15,000 HUMAN GENOME PROJECT THAT ALLOW 9695 06:45:15,000 --> 06:45:21,720 US TO HAVE SOME BIAS AND WE 9696 06:45:21,720 --> 06:45:27,240 PROPOSE THE SEQUENCE IN 9697 06:45:27,240 --> 06:45:29,720 ASSOCIATION TO ADDRESS THE 9698 06:45:29,720 --> 06:45:34,720 MISSING LINK OF OUR HUMAN GENOME 9699 06:45:34,720 --> 06:45:37,160 AND WE'LL SEE THE PROJECT SOME 9700 06:45:37,160 --> 06:45:38,200 TIME LAST YEAR. 9701 06:45:38,200 --> 06:45:43,760 I WENT TO THANK ALL THE FUNDERS 9702 06:45:43,760 --> 06:45:54,120 AND THANK YOU SO MUCH. 9703 06:45:54,360 --> 06:45:55,480 >> WE'RE A LITTLE BIT OUT OF 9704 06:45:55,480 --> 06:45:57,400 TIME BUT THERE MAY BE QUESTIONS 9705 06:45:57,400 --> 06:45:58,320 OR COMMENTS ON THE CHAT AND Q&A. 9706 06:45:58,320 --> 06:46:03,360 YOU CAN RESPOND TO THEM. 9707 06:46:03,360 --> 06:46:04,800 ACCORDINGLY. 9708 06:46:04,800 --> 06:46:15,240 LET'S MOVE ON NEXT TO TO THE TOP 9709 06:46:15,240 --> 06:46:17,680 MED PROGRAM AND THE NEXT THREE 9710 06:46:17,680 --> 06:46:21,080 SPEAKERS WILL GIVE SNIPPETS OF 9711 06:46:21,080 --> 06:46:22,360 SICKLE CELL RELATED WORK USING 9712 06:46:22,360 --> 06:46:23,800 TOP MED DATA. 9713 06:46:23,800 --> 06:46:31,800 THE FIRST SPEAKER IS DR. MARILYN 9714 06:46:31,800 --> 06:46:35,400 TELLEN IN BIOLOGIC MEASURES AND 9715 06:46:35,400 --> 06:46:40,640 MULTI-OMICS AS PROGNOSTIC 9716 06:46:40,640 --> 06:46:46,360 FACTORS IN SICKLE CELL DISEASE. 9717 06:46:46,360 --> 06:46:52,040 >> I WAS TRYING TO GET TO MY 9718 06:46:52,040 --> 06:46:57,720 FIRST SLIDE. 9719 06:46:57,720 --> 06:47:00,960 >> SO WHAT I'M GOING TO DO TODAY 9720 06:47:00,960 --> 06:47:04,280 ALL THE TALKS TODAY HAVE BEEN 9721 06:47:04,280 --> 06:47:06,120 WONDERFUL INTRODUCTION TO WHAT I 9722 06:47:06,120 --> 06:47:07,840 HAVE TO SAY SO I'M GOING TO GO 9723 06:47:07,840 --> 06:47:10,760 THROUGH THE FIRST COUPLE SLIDES 9724 06:47:10,760 --> 06:47:11,360 REALLY FAST. 9725 06:47:11,360 --> 06:47:15,600 WE'VE HEARD ABOUT MEASUREMENTS 9726 06:47:15,600 --> 06:47:18,080 OF CELL BIOLOGY AND HEARD ABOUT 9727 06:47:18,080 --> 06:47:19,200 PROTEOMICS AND GENETICS. 9728 06:47:19,200 --> 06:47:24,160 WHAT I'M GOING TO TALK ABOUT IS 9729 06:47:24,160 --> 06:47:28,800 THE ACTUAL PROCESS OF PREDICTING 9730 06:47:28,800 --> 06:47:30,400 VARIABILITY IN SICKLE CELL 9731 06:47:30,400 --> 06:47:31,480 DISEASE AND SPECIFICALLY WHAT DO 9732 06:47:31,480 --> 06:47:33,680 WE WANT TO PREDICT AND WHY. 9733 06:47:33,680 --> 06:47:38,080 I WOULD ARGUE THAT WE WANT TO 9734 06:47:38,080 --> 06:47:40,760 PREDICT THINGS IN THE SHORT TERM 9735 06:47:40,760 --> 06:47:45,040 SUCH AS BOC FREQUENCY AND RISK 9736 06:47:45,040 --> 06:47:46,480 OF STROKE AND WE HAVE 9737 06:47:46,480 --> 06:47:48,080 THERAPEUTICS TO ADDRESS THOSE 9738 06:47:48,080 --> 06:47:49,120 THINGS AND WE WOULD LIKE TO 9739 06:47:49,120 --> 06:47:51,840 DIRECT THEM TO THE RIGHT PEOPLE. 9740 06:47:51,840 --> 06:47:55,560 ON THE LONG-TERM PROGNOSIS, WE 9741 06:47:55,560 --> 06:47:57,280 WORRY ABOUT END ORGAN DAMAGE 9742 06:47:57,280 --> 06:48:04,240 SUCH AS STROKE, KIDNEY DISEASE, 9743 06:48:04,240 --> 06:48:05,160 PULMONARY HYPERTENSION AND HOW 9744 06:48:05,160 --> 06:48:07,200 PATIENTS AGE AND SURVIVE OVER 9745 06:48:07,200 --> 06:48:08,120 TIME. 9746 06:48:08,120 --> 06:48:10,520 SO THE PURPOSE OF HAVING 9747 06:48:10,520 --> 06:48:11,160 PREDICTIVE MEASURES WOULD BE 9748 06:48:11,160 --> 06:48:19,240 BOTH PREVENTION AND TREATMENT. 9749 06:48:19,240 --> 06:48:29,720 I'M WAITING FOR THIS WE'VE 9750 06:48:55,440 --> 06:48:57,920 LOOKED AT PREDICTORS OF ACUTE 9751 06:48:57,920 --> 06:48:59,240 CHEST SYNDROME BUT THE ASSAY WAS 9752 06:48:59,240 --> 06:49:01,440 DIFFICULT TO WORK WITH. 9753 06:49:01,440 --> 06:49:05,160 I'LL MENTION THE ROLE OF 9754 06:49:05,160 --> 06:49:10,560 LEUKOCYTE ACTIVATION BECAUSE I 9755 06:49:10,560 --> 06:49:11,200 HAVE PRELIMINARY EVIDENCE AND 9756 06:49:11,200 --> 06:49:14,400 THEY'RE ACTIVATED IN SICKLE CELL 9757 06:49:14,400 --> 06:49:14,640 DISEASE. 9758 06:49:14,640 --> 06:49:19,720 WE KNOW THEY PARTICIPATE IN 9759 06:49:19,720 --> 06:49:21,800 HETEROCELLULAR FORMATION THAT 9760 06:49:21,800 --> 06:49:23,640 INVOLVES P SELECTIN. 9761 06:49:23,640 --> 06:49:26,920 UNFORTUNATELY WHEN A DRUG THAT 9762 06:49:26,920 --> 06:49:27,480 INHIBITED THAT AGGREGATE 9763 06:49:27,480 --> 06:49:28,680 FORMATION EXPERIMENTALLY WAS 9764 06:49:28,680 --> 06:49:32,880 GIVEN TO PEOPLE IT FAILED TO 9765 06:49:32,880 --> 06:49:35,320 INDUCE A SIGNIFICANTLY DECREASED 9766 06:49:35,320 --> 06:49:37,640 AMOUNT OF PAIN AND BASAL 9767 06:49:37,640 --> 06:49:43,880 OCCLUSION AND WE KNOW IN THE 9768 06:49:43,880 --> 06:49:46,800 PAST THAT SICKLE RED CELLS 9769 06:49:46,800 --> 06:49:47,920 INCLUDE NEUTROPHILS. 9770 06:49:47,920 --> 06:49:51,240 WHAT WE HAVEN'T KNOWN IS WHETHER 9771 06:49:51,240 --> 06:49:51,920 IMPROVEMENTS IN RED CELL HEALTH 9772 06:49:51,920 --> 06:49:54,200 LIKE THE THINGS YOU HEARD ABOUT 9773 06:49:54,200 --> 06:49:56,680 TODAY WITH SICKLING AND OTHER 9774 06:49:56,680 --> 06:49:59,880 SUCH THINGS ACTUALLY CHANGES THE 9775 06:49:59,880 --> 06:50:03,240 DEGREE TO WHICH SICKLE RED CELLS 9776 06:50:03,240 --> 06:50:04,800 AFFECT LEUKOCYTE ACTIVATION AND 9777 06:50:04,800 --> 06:50:08,680 IF SO IS THAT LINKED TO EVENTS 9778 06:50:08,680 --> 06:50:09,960 SUCH AS BASAL OCCLUSION. 9779 06:50:09,960 --> 06:50:16,400 AND THIS IS A SLIDE THAT I 9780 06:50:16,400 --> 06:50:17,000 PRESENTED AT THE GLOBAL SICKLE 9781 06:50:17,000 --> 06:50:19,200 CELL MEETING THIS SUMMER THAT 9782 06:50:19,200 --> 06:50:23,840 COMES FROM THE PHASE 1 TRIAL OF 9783 06:50:23,840 --> 06:50:26,120 A FORM OF THERAPEUTICS. 9784 06:50:26,120 --> 06:50:29,600 THEY WERE LOOKING AT SEVERAL 9785 06:50:29,600 --> 06:50:32,240 MARKERS OF INFLAMMATION. 9786 06:50:32,240 --> 06:50:39,240 ON THE RIGHT IS WHITE CELL COUNT 9787 06:50:39,240 --> 06:50:46,160 AND THE OTHER IS ANOTHER LEVEL 9788 06:50:46,160 --> 06:50:55,880 AND IN THE MIDDLE IS ONE OF THE 9789 06:50:55,880 --> 06:50:56,760 THINGS WIFE BEEN WORKING ON AND 9790 06:50:56,760 --> 06:50:56,920 THERE'S 9791 06:50:58,960 --> 06:51:01,200 -- WE'VE BEEN WORK ON AND WE SEE 9792 06:51:01,200 --> 06:51:07,240 LESS IN PATIENTS TREATED WITH 9793 06:51:07,240 --> 06:51:09,000 DRUG AND THERE'S SUGGESTIVE 9794 06:51:09,000 --> 06:51:10,800 EVIDENCE FROM THE PHASE 1 TRIAL 9795 06:51:10,800 --> 06:51:13,480 WHETHER THAT'S LINKED TO 9796 06:51:13,480 --> 06:51:15,520 DECREASED BASAL OCCLUSION. 9797 06:51:15,520 --> 06:51:16,840 AND JUST ANOTHER INTERESTING 9798 06:51:16,840 --> 06:51:19,200 FACT THAT COMES FROM A 9799 06:51:19,200 --> 06:51:24,480 DIFFERENCE STUDY THAT WE HAVE 9800 06:51:24,480 --> 06:51:29,680 BEEN DOING IS THAT NEUTROPHIL 9801 06:51:29,680 --> 06:51:32,640 ACTIVATION SEEMS TO BE STRONGLY 9802 06:51:32,640 --> 06:51:37,040 LINKED TO THE WHICH THEY EXPOSE 9803 06:51:37,040 --> 06:51:39,800 THES DRIVER FOR ACTIVATION OF 9804 06:51:39,800 --> 06:51:40,160 COAGULATION. 9805 06:51:40,160 --> 06:51:42,840 BUT IT ALSO SEEMS TO BE A DRIVER 9806 06:51:42,840 --> 06:51:48,480 OF NEUTROPHIL ACTIVATION. 9807 06:51:48,480 --> 06:51:50,960 SO LONG-TERM PROGNOSIS WHICH IS 9808 06:51:50,960 --> 06:51:52,600 WHAT I'LL SPEND THE REST OF THE 9809 06:51:52,600 --> 06:51:56,800 TIME ON, WE HAVE WONDERFUL 9810 06:51:56,800 --> 06:51:58,800 EVIDENCE ABOUT STROKE FROM MANY 9811 06:51:58,800 --> 06:52:01,240 PEOPLE'S WORK USING TRANS 9812 06:52:01,240 --> 06:52:04,000 CRANIAL DOPPLERS AND LOOK 9813 06:52:04,000 --> 06:52:07,240 LOOKING AT THE EFFECT OF 9814 06:52:07,240 --> 06:52:09,840 TRANSFUSIONS AND LEARNED A LOT 9815 06:52:09,840 --> 06:52:14,280 ABOUT NEPHROPATHY AND WE SHOWED 9816 06:52:14,280 --> 06:52:24,800 THE LINKAGE OF APOLL -- APOL 1 9817 06:52:27,120 --> 06:52:32,520 IN NEUROPATHY AND LOOKED AT A 9818 06:52:32,520 --> 06:52:37,640 RISK SCORE FOR PROGRESSION OF 9819 06:52:37,640 --> 06:52:39,080 SICKLE CELL NEPHROPATHY AND 9820 06:52:39,080 --> 06:52:41,280 SEVERAL PEOPLE HAVE SHOWN NICELY 9821 06:52:41,280 --> 06:52:44,000 AND IT'S REPRODUCED BY OTHERS 9822 06:52:44,000 --> 06:52:50,600 THAT ADHESION FACTORS SUCH AS 9823 06:52:50,600 --> 06:52:55,680 ICAM 1 ARE LINKED TO SUR VIEFRL 9824 06:52:55,680 --> 06:53:00,440 AS AND CLINICAL HISTORY WAS 9825 06:53:00,440 --> 06:53:02,800 LINKED TO LONG-TERM SURVIVAL BY 9826 06:53:02,800 --> 06:53:07,520 PLATT AND OUR SELVES AND OTHERS 9827 06:53:07,520 --> 06:53:09,840 HAVE SHOWN MULTI-ORGAN SEVERITY 9828 06:53:09,840 --> 06:53:12,040 SCORE HAS BEEN LINKED TO 9829 06:53:12,040 --> 06:53:12,320 SURVIVAL. 9830 06:53:12,320 --> 06:53:14,240 IN THINKING ABOUT WHAT HAPPENS 9831 06:53:14,240 --> 06:53:15,400 TO SICKLE CELL PATIENTS AS THEY 9832 06:53:15,400 --> 06:53:19,720 AGE AND GET OLDER, ON THE LEFT 9833 06:53:19,720 --> 06:53:23,440 YOU SEE SOME OF THE HIGH POINTS, 9834 06:53:23,440 --> 06:53:25,880 IF YOU WILL, IF SICKLE CELL 9835 06:53:25,880 --> 06:53:27,240 PATHOPHYSIOLOGY INCLUDING THE 9836 06:53:27,240 --> 06:53:30,480 CHRONIC INFLAMMATION AND 9837 06:53:30,480 --> 06:53:34,000 OXIDATIVE STRESS AND INCREASED 9838 06:53:34,000 --> 06:53:35,520 STEM CELL TURNOVER AND ON TOP OF 9839 06:53:35,520 --> 06:53:37,560 THAT WE HAVE THE GENETIC 9840 06:53:37,560 --> 06:53:37,920 VARIANTS. 9841 06:53:37,920 --> 06:53:38,560 SEVERAL OF WHICH YOU HEARD ABOUT 9842 06:53:38,560 --> 06:53:43,440 TODAY. 9843 06:53:43,440 --> 06:53:46,800 THEN WE HAVE ALL THE OTHER 9844 06:53:46,800 --> 06:53:50,120 PROCESSES DURING AGING, DNA 9845 06:53:50,120 --> 06:53:53,240 MITOCHONDRIAL DNA COPY NUMBER 9846 06:53:53,240 --> 06:53:55,360 NAH NATURALLY DECREASES AS 9847 06:53:55,360 --> 06:53:58,920 THERE'S ACQUIRED DNA DAMAGE. 9848 06:53:58,920 --> 06:54:04,000 WE SEE CLONAL HEMATOPOIESIS IN 9849 06:54:04,000 --> 06:54:04,960 EVERYBODY WITH OR WITHOUT SICKLE 9850 06:54:04,960 --> 06:54:07,760 CELL DISEASE AS THEY AGE. 9851 06:54:07,760 --> 06:54:10,680 WE SEE INCREASING CHIP. 9852 06:54:10,680 --> 06:54:14,080 YOU GET TELOMERE SHORTENING AND 9853 06:54:14,080 --> 06:54:15,240 AGE-RELATED DNA METHYLATION 9854 06:54:15,240 --> 06:54:19,240 CHANGES AND THIS HAPPENS IN 9855 06:54:19,240 --> 06:54:20,040 EVERYBODY NATURALLY WHETHER THEY 9856 06:54:20,040 --> 06:54:21,040 HAVE SICKLE CELL DISEASE OR NOT. 9857 06:54:21,040 --> 06:54:24,520 THE QUESTION IS DO THEY HAPPEN 9858 06:54:24,520 --> 06:54:26,120 DIFFERENTLY AND IN AN 9859 06:54:26,120 --> 06:54:27,760 ACCELERATED WAY AND IN WHAT WAY, 9860 06:54:27,760 --> 06:54:29,720 IF ANY, DO THEY PARTICULARLY 9861 06:54:29,720 --> 06:54:31,720 CONTRIBUTE TO AGING AND SURVIVAL 9862 06:54:31,720 --> 06:54:35,280 IN SICKLE CELL DISEASE. 9863 06:54:35,280 --> 06:54:42,680 WHAT WE'RE TRYING TO DO IS LOOK 9864 06:54:42,680 --> 06:54:48,320 AT MEASURES OF PHYSIOLOGIC 9865 06:54:48,320 --> 06:54:51,080 DYSFUNCTION AND PROTEOMIC 9866 06:54:51,080 --> 06:54:55,600 MEASURE AND ORGAN INJURY AND 9867 06:54:55,600 --> 06:54:57,520 MEASUREMENTS OF FRAILTY IN ORDER 9868 06:54:57,520 --> 06:54:59,280 TO UNDERSTAND EARLY MORTALITY 9869 06:54:59,280 --> 06:55:02,280 VERSUS MORE SUCCESSFUL AGING. 9870 06:55:02,280 --> 06:55:04,720 AND THIS IS JUST A RECAP OF WHAT 9871 06:55:04,720 --> 06:55:06,440 I'VE SAID WHICH I'M GOING TO GO 9872 06:55:06,440 --> 06:55:07,240 OVER FAST IN THE INTEREST OF 9873 06:55:07,240 --> 06:55:08,920 TIME. 9874 06:55:08,920 --> 06:55:14,240 SO OUR GOAL IS TO IDENTIFY THE 9875 06:55:14,240 --> 06:55:15,720 MULTIPLE FACTORS CONTRIBUTING TO 9876 06:55:15,720 --> 06:55:18,000 ADVERSE OUTCOMES AND TO DEVELOP 9877 06:55:18,000 --> 06:55:20,600 A ROBUST ALGORITHM USING THE 9878 06:55:20,600 --> 06:55:22,800 FACTORS IN APPROPRIATE FASHION 9879 06:55:22,800 --> 06:55:25,440 TO PREDICT SURVIVAL AND FRAILTY 9880 06:55:25,440 --> 06:55:27,240 BASED ON CLINICAL AND 9881 06:55:27,240 --> 06:55:28,800 METABOLOMIC AND PROTEOMIC AND 9882 06:55:28,800 --> 06:55:31,480 GENETIC FACTORS. 9883 06:55:31,480 --> 06:55:40,720 TO DO THIS WE'RE USING THE ADULT 9884 06:55:40,720 --> 06:55:44,360 SICKLE CELL COHORTS YOU SEE 9885 06:55:44,360 --> 06:55:45,520 HERE. 9886 06:55:45,520 --> 06:55:48,480 TOGETHER GIVE US ABOUT ALMOST 9887 06:55:48,480 --> 06:55:49,560 4,000 PATIENTS. 9888 06:55:49,560 --> 06:55:57,480 THESE ARE ALL ADULT PATIENTS AND 9889 06:55:57,480 --> 06:56:00,080 THEY HAVE A VARIETY OF 9890 06:56:00,080 --> 06:56:01,080 PHENOTYPIC DATA AVAILABLE AS 9891 06:56:01,080 --> 06:56:06,640 WELL AS WHOLE GENOME 9892 06:56:06,640 --> 06:56:07,520 SECOND-CHA 9893 06:56:07,520 --> 06:56:09,280 SECOND-CHANCING AND SOMETIMES 9894 06:56:09,280 --> 06:56:09,920 PROTEOMICS AND SOMETIMES OTHER 9895 06:56:09,920 --> 06:56:12,160 MEASUREMENTS. 9896 06:56:12,160 --> 06:56:18,640 NOW, ONE OF THE THINGS, DUKE HAS 9897 06:56:18,640 --> 06:56:21,760 BEEN PIONEERING UNDERSTANDING 9898 06:56:21,760 --> 06:56:24,400 AGING AND FRAILTY IN SICKLE CELL 9899 06:56:24,400 --> 06:56:25,960 PATIENTS. 9900 06:56:25,960 --> 06:56:27,880 AND THE LITERATURE ON FRAILTY 9901 06:56:27,880 --> 06:56:28,800 UNTIL FAIRLY RECENTLY I THINK 9902 06:56:28,800 --> 06:56:31,600 HAS NOT BEEN ALL THAT RELEVANT 9903 06:56:31,600 --> 06:56:34,040 TO SICKLE CELL PATIENTS PERHAPS 9904 06:56:34,040 --> 06:56:36,720 BUT IT'S WELL SHOWN THAT 9905 06:56:36,720 --> 06:56:38,680 MEASUREMENTS OF FRAILTY HAVE 9906 06:56:38,680 --> 06:56:40,560 PREDICTIVE VALUES IN MANY 9907 06:56:40,560 --> 06:56:41,600 POPULATIONS WITH AND WITHOUT 9908 06:56:41,600 --> 06:56:42,240 CHRONIC DISEASES. 9909 06:56:42,240 --> 06:56:48,200 SO WE'VE BEEN TRYING TO IDENTIFY 9910 06:56:48,200 --> 06:56:50,440 OR DESIGN A CLINICAL AND FRAILTY 9911 06:56:50,440 --> 06:56:52,560 BASED INDEX THAT IS A BETTER 9912 06:56:52,560 --> 06:56:55,840 PREDICTOR OF SURVIVAL THAN OUR 9913 06:56:55,840 --> 06:56:57,000 PREVIOUSLY USED MULTI-ORGAN 9914 06:56:57,000 --> 06:57:02,600 SEVERITY SCORE. 9915 06:57:02,600 --> 06:57:05,000 WE DID THAT AND LOOKED AT 9916 06:57:05,000 --> 06:57:07,160 FACTORS IN THE FRAILTY INDEX 9917 06:57:07,160 --> 06:57:11,240 CONSISTENT OF 24 LABORATORY AND 9918 06:57:11,240 --> 06:57:13,800 PHYSICAL EXAM BASED FACTORS AND 9919 06:57:13,800 --> 06:57:15,880 LOOKED AT THE PREDICTED 9920 06:57:15,880 --> 06:57:16,160 SURVIVAL. 9921 06:57:16,160 --> 06:57:18,520 ON THE LEFT IS THE ORGAN 9922 06:57:18,520 --> 06:57:21,320 SEVERITY SCORE WE USED AND 9923 06:57:21,320 --> 06:57:22,760 PUBLISHED PREVIOUSLY AND ON THE 9924 06:57:22,760 --> 06:57:28,600 RIGHT IS THE SURVIVAL BY FRAILTY 9925 06:57:28,600 --> 06:57:33,200 INDEX AND IT SEEMS A BIT MORE 9926 06:57:33,200 --> 06:57:34,640 POWERFUL AND THERE'S OUR ATTEMPT 9927 06:57:34,640 --> 06:57:36,320 AT THE FRAILTY INDEX AND WE'RE 9928 06:57:36,320 --> 06:57:39,000 WORKING TO OPTIMIZE IT TO 9929 06:57:39,000 --> 06:57:40,200 INCLUDE ADDITIONAL NON-SICKLE 9930 06:57:40,200 --> 06:57:43,000 CELL RELATED PATHOPHYSIOLOGIES 9931 06:57:43,000 --> 06:57:44,760 EASILY AVAILABLE FOR MOST 9932 06:57:44,760 --> 06:57:46,120 ELECTRONIC HEALTH RECORDS. 9933 06:57:46,120 --> 06:57:51,080 THE POINT OF THIS BEING THAT ALL 9934 06:57:51,080 --> 06:57:52,160 ALL THE ITEMS IN THE FRAILTY 9935 06:57:52,160 --> 06:57:55,120 INDEX ARE THINGS THAT YOU CAN 9936 06:57:55,120 --> 06:57:56,560 EXTRACT FROM MEDICAL RECORDS. 9937 06:57:56,560 --> 06:57:57,240 YOU DON'T HAVE TO DO ADDITIONAL 9938 06:57:57,240 --> 06:58:01,920 TESTING. 9939 06:58:01,920 --> 06:58:04,560 NOW, IN ADDITION, WE ARE LOOKING 9940 06:58:04,560 --> 06:58:08,720 AT OTHER MEASUREMENTS OF AGING, 9941 06:58:08,720 --> 06:58:10,600 TELOMERE LENGTH IS ONE OF THE 9942 06:58:10,600 --> 06:58:14,440 ESTABLISHED MARKERS OF AGING BUT 9943 06:58:14,440 --> 06:58:15,240 IN SICKLE CELL DISEASE THOUGH 9944 06:58:15,240 --> 06:58:21,160 THERE HAVE BEEN A FEW STUDIES 9945 06:58:21,160 --> 06:58:27,240 THEY'RE SOMEWHAT CONTRADICTORY 9946 06:58:27,240 --> 06:58:37,800 BECAUSE HYPOXY UREA AFFECTED AND 9947 06:58:42,200 --> 06:58:48,080 RECENTLY TOP MED HAS IDENTIFIED 9948 06:58:48,080 --> 06:58:51,280 36 LOCI ASSOCIATED WITH TELOMERE 9949 06:58:51,280 --> 06:58:55,360 LENGTH 20 OF WHICH WERE NOVEL 9950 06:58:55,360 --> 06:58:58,440 COMPARED TO PREVIOUS LITERATURE. 9951 06:58:58,440 --> 06:59:01,520 MITOCHONDRIAL DNA COPY NUMBER 9952 06:59:01,520 --> 06:59:02,720 VARIES AMONG INDIVIDUALS AND 9953 06:59:02,720 --> 06:59:04,640 INFLUENCED BY GENETICS AND 9954 06:59:04,640 --> 06:59:09,480 PHYSIO LOGIC PROCESSES WITH 9955 06:59:09,480 --> 06:59:12,200 LEUKOCYTE CONTENT ESPECIALLY 9956 06:59:12,200 --> 06:59:14,280 REFLECTING OXIDANT-INDUCED CELL 9957 06:59:14,280 --> 06:59:15,200 DAMAGE WHICH IS QUITE RELEVANT 9958 06:59:15,200 --> 06:59:18,800 TO SICKLE CELL DISEASE. 9959 06:59:18,800 --> 06:59:20,920 MITOCHONDRIAL DYSFUNCTION IS A 9960 06:59:20,920 --> 06:59:23,080 MAJOR HALLMARK OF AGING AS WELL 9961 06:59:23,080 --> 06:59:24,440 AS SICKLE CELL DISEASE AND IT'S 9962 06:59:24,440 --> 06:59:25,960 BEEN STUDIED IN OTHER DISEASES 9963 06:59:25,960 --> 06:59:27,800 AND CONDITIONS FOR ASSOCIATION 9964 06:59:27,800 --> 06:59:31,440 WITH CLINICAL OUTCOMES SUCH AS 9965 06:59:31,440 --> 06:59:32,160 HYPERTENSION, CARDIOVASCULAR 9966 06:59:32,160 --> 06:59:34,000 DISEASE AND DIABETES AND HAS 9967 06:59:34,000 --> 06:59:40,280 BEEN IN DEPDEPENDENT WITH 9968 06:59:40,280 --> 06:59:42,720 CARDIOVASCULAR DISEASE IN THREE 9969 06:59:42,720 --> 06:59:44,720 PROSPECTIVE STUDIES WE 9970 06:59:44,720 --> 06:59:48,080 HYPOTHESIZE THE MITOCHONDRIAL 9971 06:59:48,080 --> 06:59:49,720 DNA WILL PROVIDE INFORMATION TO 9972 06:59:49,720 --> 06:59:54,040 IDENTIFY INDIVIDUALS PRONE TO 9973 06:59:54,040 --> 06:59:56,920 INFLAMMATORY AND VASCULAR PATHIC 9974 06:59:56,920 --> 06:59:58,320 AND ORGAN DAMAGE AMONG PATIENTS 9975 06:59:58,320 --> 06:59:59,680 WITH SICKLE CELL DISEASE. 9976 06:59:59,680 --> 07:00:03,160 LOOKING AT TELOMERE LENGTH AND 9977 07:00:03,160 --> 07:00:04,800 MITOCHONDRIAL DNA COPY NUMBER WE 9978 07:00:04,800 --> 07:00:08,000 HAVE THUS FAR ONLY USED OUR ONLY 9979 07:00:08,000 --> 07:00:10,480 DATA SET WHICH IS PROBABLY JUST 9980 07:00:10,480 --> 07:00:13,880 SHY OF 600 PATIENTS AND WE'VE 9981 07:00:13,880 --> 07:00:18,800 LOOKED AT FOUR ASSOCIATIONS OF 9982 07:00:18,800 --> 07:00:22,800 TELOMERE LENGTH AND 9983 07:00:22,800 --> 07:00:27,160 MITOCHONDRIAL DNA COPY NUMBER. 9984 07:00:27,160 --> 07:00:28,120 WE SEE SOME INTERESTING 9985 07:00:28,120 --> 07:00:30,760 ASSOCIATIONS SUCH AS THE COPY 9986 07:00:30,760 --> 07:00:34,520 NUMBER ON HYDROXYUREA USE 9987 07:00:34,520 --> 07:00:37,840 PERHAPS THE TELOMERE LENGTH AND 9988 07:00:37,840 --> 07:00:48,120 BRONCO DIE -- DILATOR USE AND 9989 07:00:48,120 --> 07:00:52,760 LOOK AT HEMOLYSIS LIKE BILIRUBIN 9990 07:00:52,760 --> 07:00:56,160 AND HOPE TO EXTEND THESE TO THE 9991 07:00:56,160 --> 07:00:58,960 OTHER TOP MED DATA SETS I SHOWED 9992 07:00:58,960 --> 07:01:02,280 PREVIOUSLY. 9993 07:01:02,280 --> 07:01:04,160 CLONAL HEMATOPOIESIS IS NOT ONLY 9994 07:01:04,160 --> 07:01:08,680 A MARKER FOR FUTURE 9995 07:01:08,680 --> 07:01:12,520 HEMATOPOIETIC MALIGNANCIES AND 9996 07:01:12,520 --> 07:01:14,720 HAS BEEN SHOWN TO BE A MARKER 9997 07:01:14,720 --> 07:01:16,760 FOR OTHER DISEASES SUCH AS FOR 9998 07:01:16,760 --> 07:01:26,080 LIVER AND HEART. 9999 07:01:26,080 --> 07:01:28,760 AND THEY'RE AMONG THE SLIGHTLY 10000 07:01:28,760 --> 07:01:30,240 LESS THAN 98,000 PARTICIPANTS OF 10001 07:01:30,240 --> 07:01:40,600 DIVERSE ANCESTRIES. 10002 07:01:46,600 --> 07:01:48,440 AND THERE'S BEEN TWO RECENT 10003 07:01:48,440 --> 07:01:51,080 STUDIES AND THE ONE COMING FROM 10004 07:01:51,080 --> 07:01:53,680 TOP NED WHICH DID NOT SHOW A 10005 07:01:53,680 --> 07:01:55,120 SIGNIFICANT INCREASED RISK OF 10006 07:01:55,120 --> 07:01:58,800 CHIP AND THE ONE COMING FROM THE 10007 07:01:58,800 --> 07:02:05,720 GROUP HEADED WHICH SHOWED AN AND 10008 07:02:05,720 --> 07:02:15,240 INTERESTINGLY IN TOP MED HAS 10009 07:02:15,240 --> 07:02:25,600 ALSO USED MENDEL YAN 10010 07:02:36,600 --> 07:02:39,240 ASSOCIATION AND I WANT TO GET TO 10011 07:02:39,240 --> 07:02:42,120 THE EPIGENETIC EVALUATION WHICH 10012 07:02:42,120 --> 07:02:44,000 WE ALSO HAVE UNDERWAY WITH OUR 10013 07:02:44,000 --> 07:02:51,240 TOP MED GROUP. 10014 07:02:51,240 --> 07:02:56,920 AGAIN, PATIENTS WITH SICKLE CELL 10015 07:02:56,920 --> 07:02:59,120 DISEASE ARE 20 TO 30 YEARS OLDER 10016 07:02:59,120 --> 07:03:01,120 THAN THEIR CHRONOLOGIC AGE 10017 07:03:01,120 --> 07:03:08,400 COMPARED TO OTHER PATIENTS. 10018 07:03:08,400 --> 07:03:11,840 SO WE'RE GOING TO LOOK AT 10019 07:03:11,840 --> 07:03:16,280 PROTEOMICS AND WE'VE DONE THAT 10020 07:03:16,280 --> 07:03:26,840 SO SOME EXTENT WITH NEPHROPATHY. 10021 07:03:38,360 --> 07:03:43,840 AND THIS IS RELATED TO OUR 10022 07:03:43,840 --> 07:03:45,960 SURVIVAL IN OUR PRELIMINARY 10023 07:03:45,960 --> 07:03:47,400 PROTEOMICS AND IN OUR 10024 07:03:47,400 --> 07:03:50,960 PRELIMINARY METABOLOMICS. 10025 07:03:50,960 --> 07:03:52,800 THIS IS PUBLISHED DATA SO I'M 10026 07:03:52,800 --> 07:03:55,200 JUST GOING TO REMIND YOU THAT WE 10027 07:03:55,200 --> 07:03:56,520 HAVE BEEN WORKING ON RISK SCORES 10028 07:03:56,520 --> 07:03:58,160 AND THIS IS TO ILLUSTRATE THE 10029 07:03:58,160 --> 07:04:02,160 KIND OF THING WE HOPED TO DO IS 10030 07:04:02,160 --> 07:04:05,480 TO DEVELOP A MUCH MORE COMPLETE 10031 07:04:05,480 --> 07:04:07,200 RISK SCORE FOR THINGS LIKE 10032 07:04:07,200 --> 07:04:09,160 NEPHROPATHY AND SURVIVAL. 10033 07:04:09,160 --> 07:04:11,920 I THINK WITH THE MULTIPLE TOP 10034 07:04:11,920 --> 07:04:13,360 MED DATA SETS WE SHOULD BE ABLE 10035 07:04:13,360 --> 07:04:15,120 TO IDENTIFY A SET OF PREDICTORS 10036 07:04:15,120 --> 07:04:18,840 AMONG ALL THE OMICS MEASURES 10037 07:04:18,840 --> 07:04:22,200 THAT ARE ROBUST AND WILL BE 10038 07:04:22,200 --> 07:04:22,640 USEFUL. 10039 07:04:22,640 --> 07:04:24,120 WE'LL USE A NUMBER OF DIFFERENT 10040 07:04:24,120 --> 07:04:24,360 METHODS. 10041 07:04:24,360 --> 07:04:26,840 I WON'T GET INTO THAT FOR THE 10042 07:04:26,840 --> 07:04:29,600 LACK OF TIME BUT WE WILL 10043 07:04:29,600 --> 07:04:31,360 INCORPORATE CLINICAL EPIGENETIC 10044 07:04:31,360 --> 07:04:35,240 AGE AND TELOMERE AGE AND 10045 07:04:35,240 --> 07:04:37,960 MITOCHONDRIAL DNA RISK FACTORS 10046 07:04:37,960 --> 07:04:38,960 AS WELL AS MEASUREMENTS OF 10047 07:04:38,960 --> 07:04:40,760 FRAILTY AND THEN IN THE SECOND 10048 07:04:40,760 --> 07:04:44,840 SET OF MOLTS WE'LL INCLUDE THE 10049 07:04:44,840 --> 07:04:47,520 PROTEOMICS AND METABOLOMICS 10050 07:04:47,520 --> 07:04:47,720 DATA. 10051 07:04:47,720 --> 07:04:50,560 A COMPREHENSIVE STUDY OF THESE 10052 07:04:50,560 --> 07:04:55,320 RISK FACTORS IS LOOKING IN 10053 07:04:55,320 --> 07:04:56,480 SICKLE CELL DISEASE BUT HOLDS 10054 07:04:56,480 --> 07:05:00,400 THE POTENTIAL FOR REALLY 10055 07:05:00,400 --> 07:05:04,120 PRODUCING THE ABILITY TO RISK 10056 07:05:04,120 --> 07:05:05,760 STRATIFY AND TO MAKE OUR 10057 07:05:05,760 --> 07:05:09,960 CLINICAL STUDIES OF 10058 07:05:09,960 --> 07:05:10,520 INTERVENTIONS BETTER BY 10059 07:05:10,520 --> 07:05:11,760 IDENTIFYING TRULY PATIENTS AT 10060 07:05:11,760 --> 07:05:16,800 RISK FOR A PARTICULAR OUTCOME 10061 07:05:16,800 --> 07:05:20,360 AND ALSO POSSIBLY TO ELUCIDATE 10062 07:05:20,360 --> 07:05:28,800 NEW MECHANISMS OF PATH YO -- 10063 07:05:28,800 --> 07:05:29,960 PATH YOO PHYSIOL 10064 07:05:33,840 --> 07:05:34,760 PATHOPHYSIOLOGY AND HOPE TO 10065 07:05:34,760 --> 07:05:40,600 TARGET NEW PATIENTS FOR THE 10066 07:05:40,600 --> 07:05:41,920 TRIAL AND WILL HIGHLIGHT SOME OF 10067 07:05:41,920 --> 07:05:42,960 THE PEOPLE WHO PARTICIPATED IN 10068 07:05:42,960 --> 07:05:52,840 THE STUDIES AT DUKE AND MY PA 10069 07:05:52,840 --> 07:05:54,720 PARTNER AND HAVE BUILT THIS 10070 07:05:54,720 --> 07:05:58,640 PROGRAM WITH OUR SUPERB 10071 07:05:58,640 --> 07:06:01,440 STATISTICIAN AND JJ STRAUSS WHO 10072 07:06:01,440 --> 07:06:06,680 RUNS OUR ADULT SICKLE CELL 10073 07:06:06,680 --> 07:06:14,200 PROGRAM AND OTHER PEOPLE AT DUKE 10074 07:06:14,200 --> 07:06:16,040 AND OUR COLLABORATORS AT NORTH 10075 07:06:16,040 --> 07:06:17,640 CAROLINA AND EMORY AND THE 10076 07:06:17,640 --> 07:06:19,320 UNIVERSITY OF MONTREAL AND THE 10077 07:06:19,320 --> 07:06:21,000 OTHER TOP MED SICKLE CELL 10078 07:06:21,000 --> 07:06:23,400 COHORTS AND THEIR P.I.s AND ALL 10079 07:06:23,400 --> 07:06:25,080 THEIR STAFF WHO ENROLLED SO MANY 10080 07:06:25,080 --> 07:06:33,760 PATIENTS IN THE COHORTS. 10081 07:06:33,760 --> 07:06:35,840 THE FUNDS HAVE LARGELY COME AS 10082 07:06:35,840 --> 07:06:37,040 SHOWN IN THE BOTTOM OF THE 10083 07:06:37,040 --> 07:06:37,240 SLIDE. 10084 07:06:37,240 --> 07:06:38,040 I'LL END THERE. 10085 07:06:38,040 --> 07:06:43,320 >> THANK YOU, MARILYN. 10086 07:06:43,320 --> 07:06:45,760 I THINK WE'LL MOVE ON TO OUR 10087 07:06:45,760 --> 07:06:46,400 NEXT TALK. 10088 07:06:46,400 --> 07:06:47,400 THERE MAY BE COMMENTS AND 10089 07:06:47,400 --> 07:06:48,960 QUESTIONS FOR YOU IN THE CHAT 10090 07:06:48,960 --> 07:06:56,720 WHICH YOU CAN RESPOND TO. 10091 07:06:56,720 --> 07:07:00,160 NEXT SPEAKER IS GOING TO BE 10092 07:07:00,160 --> 07:07:03,280 DR. REINER PROTEOMIC ANALYSIS OF 10093 07:07:03,280 --> 07:07:07,200 SICKLE CELL TRAIT IN TOP MED. 10094 07:07:07,200 --> 07:07:11,800 >> THIS THANK YOU FOR THE 10095 07:07:11,800 --> 07:07:14,680 OPPORTUNITY TO PRESENT IN 10096 07:07:14,680 --> 07:07:21,800 PRELIMINARY RESULT IN PROTEOMIC 10097 07:07:21,800 --> 07:07:25,360 ANALYSIS IN THE SICKLE CELL 10098 07:07:25,360 --> 07:07:25,560 TRAIT. 10099 07:07:25,560 --> 07:07:27,360 WHILE SICKLE CELL DISEASE IS 10100 07:07:27,360 --> 07:07:30,120 CLEARLY AN IMPORTANT HEREDITARY 10101 07:07:30,120 --> 07:07:35,360 BLOOD DISEASE AND OBVIOUSLY THE 10102 07:07:35,360 --> 07:07:43,240 FOCUS OF THIS MEETING THE COPY 10103 07:07:43,240 --> 07:07:44,520 OF THE SICKLE CELL MUTATION AS 10104 07:07:44,520 --> 07:07:49,360 SHOWN ON THE BOTTOM RIGHT IS 10105 07:07:49,360 --> 07:07:51,240 MORE COMMON IN THE 10106 07:07:51,240 --> 07:07:58,080 U.S. AFFECTING 8% OF THE AFRICAN 10107 07:07:58,080 --> 07:07:59,960 AMERICAN POPULATION. 10108 07:07:59,960 --> 07:08:01,360 WHILE SICKLE CELL TRAIT HAS BEEN 10109 07:08:01,360 --> 07:08:05,000 CONSIDERED A RELATIVELY BENIGN 10110 07:08:05,000 --> 07:08:10,800 CONDITION WITH NO CLINICAL 10111 07:08:10,800 --> 07:08:21,280 SEQUELAE, MORE RECENTLY, HAVE 10112 07:08:24,120 --> 07:08:26,480 ASSOCIATED IT WITH INCREASE RISK 10113 07:08:26,480 --> 07:08:27,200 OF KIDNEY AND THROMBOLIC 10114 07:08:27,200 --> 07:08:35,200 DISEASE. 10115 07:08:35,200 --> 07:08:37,520 THE ORIGINAL OBSERVATION 10116 07:08:37,520 --> 07:08:40,000 ASSOCIATED WITH KIDNEY DISEASE 10117 07:08:40,000 --> 07:08:44,640 WAS MADE IN 2014 WAS BASED ON A 10118 07:08:44,640 --> 07:08:48,240 META-ANALYSIS OF FIVE 10119 07:08:48,240 --> 07:08:51,440 POPULATION-BASED NHLBI COHORT 10120 07:08:51,440 --> 07:08:58,320 STUDIES SHOWN HERE, CARDIA MESA 10121 07:08:58,320 --> 07:08:59,720 AND OTHERS WHERE SICKLE CELL 10122 07:08:59,720 --> 07:09:04,760 TRAIT WAS ASSOCIATED WITH 10123 07:09:04,760 --> 07:09:08,200 INCREASED EGFR AND TWOFOLD 10124 07:09:08,200 --> 07:09:09,440 INCREASE OF KIDNEY DISEASE 10125 07:09:09,440 --> 07:09:15,200 ACROSS A TOTAL OF ABOUT 16,000 10126 07:09:15,200 --> 07:09:25,720 AFRICAN AMERICAN PARTICIPANTS. 10127 07:09:34,880 --> 07:09:36,560 AND THE ASSOCIATION OF KIDNEY 10128 07:09:36,560 --> 07:09:39,960 DYSFUNCTION IS CONSISTENT WITH 10129 07:09:39,960 --> 07:09:42,080 DATA FROM RENAL 10130 07:09:42,080 --> 07:09:46,480 MICROANGIOGRAPHIC STUDIES DATING 10131 07:09:46,480 --> 07:09:49,120 BACK TO THE 1970s SHOWING 10132 07:09:49,120 --> 07:09:51,440 DESTRUCTION OF THE RENAL MEDULLA 10133 07:09:51,440 --> 07:09:56,920 IN SICKLE TRAIT SHOWN IN THE 10134 07:09:56,920 --> 07:09:58,160 MIDDLE PANEL INTERMEDIATE 10135 07:09:58,160 --> 07:09:59,600 BETWEEN HEALTHY INDIVIDUAL ON 10136 07:09:59,600 --> 07:10:00,240 THE LEFT AND SICKLE CELL DISEASE 10137 07:10:00,240 --> 07:10:09,920 ON THE RIGHT. 10138 07:10:09,920 --> 07:10:16,800 AND THE HYPOXIA ACIDOSIS AND 10139 07:10:16,800 --> 07:10:21,440 DERYE DRAGS AND SLOW BLOOD FLOW 10140 07:10:21,440 --> 07:10:23,000 PROMOTE HEMOGLOBIN POLY 10141 07:10:23,000 --> 07:10:26,560 POLYMERIZATION AND INCREASED 10142 07:10:26,560 --> 07:10:27,760 RISK OF KIDNEY DISEASAGE 10143 07:10:27,760 --> 07:10:36,920 COMPLICATIONS. 10144 07:10:36,920 --> 07:10:40,120 THROUGH THE NHLBI SEQUENCING 10145 07:10:40,120 --> 07:10:47,200 PROGRAM AND THE HEMATOLOGY AND 10146 07:10:47,200 --> 07:10:48,520 HEMOST 10147 07:10:48,520 --> 07:10:49,080 HEMOSTAIFS 10148 07:10:52,600 --> 07:10:56,040 -- HEMOSTAVES 10149 07:11:01,280 --> 07:11:03,960 HEMOSTASIS WORKING GROUP WHO 10150 07:11:03,960 --> 07:11:07,240 PARTICIPATED IN THE CHRONIC 10151 07:11:07,240 --> 07:11:08,680 KIDNEY DISEASE META-ANALYSIS WE 10152 07:11:08,680 --> 07:11:11,600 AND THE WORKING GROUP MEMBERS 10153 07:11:11,600 --> 07:11:18,440 HAVE STUDIED THE TRAIT IN THE 10154 07:11:18,440 --> 07:11:25,120 AFRICAN AMERICAN POPULATION. 10155 07:11:25,120 --> 07:11:27,200 SO THROUGH THE TOP MED 10156 07:11:27,200 --> 07:11:28,640 HEMATOLOGY WORKING GROUP WE HAVE 10157 07:11:28,640 --> 07:11:30,120 RECENTLY SHOWN IN ADDITION TO 10158 07:11:30,120 --> 07:11:33,040 BEING A RISK FACTOR FOR KIDNEY 10159 07:11:33,040 --> 07:11:39,240 DISEASE AND VENUS THROMBOSIS 10160 07:11:39,240 --> 07:11:40,480 SICKLE CELL DISEASE TRAIT IS 10161 07:11:40,480 --> 07:11:42,320 ASSOCIATED WITH PHENOTYPES NOT 10162 07:11:42,320 --> 07:11:47,920 ONLY LOWER EGFR AND LOWER 10163 07:11:47,920 --> 07:11:51,760 HEMOGLOBIN LEVELS AND MCB AND 10164 07:11:51,760 --> 07:11:55,320 HIGHER HEMOGLOBIN A1C LEVELS AND 10165 07:11:55,320 --> 07:12:00,600 LOWER CIRCULATING LYMPHOCYTE 10166 07:12:00,600 --> 07:12:00,800 COUNTS. 10167 07:12:00,800 --> 07:12:01,800 HOWEVER, STILL RELATIVELY LITTLE 10168 07:12:01,800 --> 07:12:04,840 IS KNOWN BY THE MECHANISMS 10169 07:12:04,840 --> 07:12:05,400 UNDERLYING THE PHENOTYPIC 10170 07:12:05,400 --> 07:12:11,560 ASSOCIATIONS. 10171 07:12:11,560 --> 07:12:13,200 WHILE LOTS OF PROGRESS HAS BEEN 10172 07:12:13,200 --> 07:12:18,240 MADE OVER THE YEARS IN 10173 07:12:18,240 --> 07:12:19,240 UNDERSTANDING HOW SICKLE 10174 07:12:19,240 --> 07:12:24,880 HEMOGLOBIN POLYMERIZATION AND 10175 07:12:24,880 --> 07:12:26,840 LEUKOCYTE ACTIVATION AND ALL 10176 07:12:26,840 --> 07:12:30,000 THINGS WE HAVE HEARD MUCH ABOUT 10177 07:12:30,000 --> 07:12:32,000 TODAY LEAD TO INCREASED 10178 07:12:32,000 --> 07:12:37,640 VISCOSITY AND VASO INCLUSION AND 10179 07:12:37,640 --> 07:12:39,520 CONTRIBUTE TO THE CLINICAL 10180 07:12:39,520 --> 07:12:41,560 SEQUELAE OF SICKLE CELL DISEASE 10181 07:12:41,560 --> 07:12:43,640 THE MECHANISMS UNDERLYING THE 10182 07:12:43,640 --> 07:12:44,640 CONSEQUENCES OF SICKLE CELL 10183 07:12:44,640 --> 07:12:46,440 TRAIT ARE NOT AS WELL AS STUDIED 10184 07:12:46,440 --> 07:12:54,320 AND THEREFORE LESS UNDERSTOOD. 10185 07:12:54,320 --> 07:12:57,200 SO WITH THIS BACKGROUND OF THE 10186 07:12:57,200 --> 07:12:58,960 POTENTIAL PUBLIC HEALTH 10187 07:12:58,960 --> 07:13:01,640 IMPORTANCE OF SICKLE TRAIT IN 10188 07:13:01,640 --> 07:13:04,800 MIND, TOGETHER WITH THE FOCUS OF 10189 07:13:04,800 --> 07:13:07,200 THE FIRST PHASE OF TOP MED WHOLE 10190 07:13:07,200 --> 07:13:11,200 GENOME SEQUENCING ON RACIAL 10191 07:13:11,200 --> 07:13:15,520 DIVERSITY INCLUDING A SIZABLE 10192 07:13:15,520 --> 07:13:16,440 NUMBER OF AFRICAN AMERICAN 10193 07:13:16,440 --> 07:13:19,080 PARTICIPANTS AS SHOWN ON THE 10194 07:13:19,080 --> 07:13:21,920 LEFT IN ORANGE AND NOW THE 10195 07:13:21,920 --> 07:13:24,120 AVAILABILITY DURING THE CURRENT 10196 07:13:24,120 --> 07:13:29,160 PHASE OF TOP MED SHOWN ON THE 10197 07:13:29,160 --> 07:13:39,280 RIGHT 10198 07:14:00,480 --> 07:14:00,560 >> 10199 07:14:00,560 --> 07:14:01,560 >> SCORERY, IS THIS THE RIGHT 10200 07:14:01,560 --> 07:14:04,680 SLIDE? 10201 07:14:04,680 --> 07:14:07,200 >> THE TOP MED SLIDE? 10202 07:14:07,200 --> 07:14:17,360 >> YEAH. 10203 07:14:43,280 --> 07:14:53,280 AND 10204 07:14:59,000 --> 07:15:04,760 >> SO SPECIFICALLY OUR PROJECT 10205 07:15:04,760 --> 07:15:14,440 INVOLVES ABOUT 2,000 FRONTRUNNER 10206 07:15:14,440 --> 07:15:23,160 S AND WE'RE CURRENTLY GENERATING 10207 07:15:23,160 --> 07:15:24,360 METHYLIZATION AND THERE'S TWO 10208 07:15:24,360 --> 07:15:26,520 TIME POINTS 15 YEARS APART. 10209 07:15:26,520 --> 07:15:30,440 THE SAMPLES FOR MULTI-OMICS WERE 10210 07:15:30,440 --> 07:15:34,240 SELECTED BASED ON THE SICKLE 10211 07:15:34,240 --> 07:15:36,520 CELL GENOTYPE STATUS AT THE 10212 07:15:36,520 --> 07:15:37,960 RS334 SNIP AND THE OVER ALL 10213 07:15:37,960 --> 07:15:41,120 PROJECT CAN BE DIVIDED INTO A 10214 07:15:41,120 --> 07:15:43,240 COUPLE SPECIFIC AIMS AS 10215 07:15:43,240 --> 07:15:53,520 SUMMARIZED HERE. 10216 07:15:58,520 --> 07:16:03,520 THERE'S THE PROTE OMIC CARRIERS 10217 07:16:03,520 --> 07:16:08,600 AND NON-CARRIERS USING THE 10218 07:16:08,600 --> 07:16:10,400 ANTIBODY-BASED PLATFORM WHICH 10219 07:16:10,400 --> 07:16:19,960 CONTAINS ABOUT 1500 PROTEINS. 10220 07:16:19,960 --> 07:16:24,200 THIS SLIDE SHOWS THE WOMEN'S 10221 07:16:24,200 --> 07:16:28,200 HEALTH INITIATIVE OR WHI WHICH 10222 07:16:28,200 --> 07:16:31,240 IS A LARGE MULTI-CENTER 10223 07:16:31,240 --> 07:16:34,040 PROSPECTIVE STUDY OF 10224 07:16:34,040 --> 07:16:34,720 POST-MENOPAUSAL WOMEN IN THE 10225 07:16:34,720 --> 07:16:38,800 U.S. WHERE PARTICIPANTS WERE 10226 07:16:38,800 --> 07:16:41,600 RECRUITED FROM 40 CLINICAL 10227 07:16:41,600 --> 07:16:47,200 CENTERS AND THE OVER ALL SAMPLE 10228 07:16:47,200 --> 07:16:49,720 INCLUDES ABOUT 15% AFRICAN 10229 07:16:49,720 --> 07:16:53,360 AMERICAN WOMEN RECRUITED FROM 10230 07:16:53,360 --> 07:17:01,640 ABOUT EIGHT MINORITY CENTERS. 10231 07:17:01,640 --> 07:17:06,880 THIS TABLE SUMMARIZES THE 10232 07:17:06,880 --> 07:17:07,760 BASELINE CHARACTERISTICS OF THE 10233 07:17:07,760 --> 07:17:11,240 600 SICKLE SAFE CARRIERS AND 600 10234 07:17:11,240 --> 07:17:12,800 AGE-MATCHED CONTROLS. 10235 07:17:12,800 --> 07:17:21,040 YOU CAN SEE ASPECT ED -- 10236 07:17:21,040 --> 07:17:26,400 EXPECTED THE HAD GFRs AND HIGHER 10237 07:17:26,400 --> 07:17:35,480 PREVALENCE OF DIABETES. 10238 07:17:35,480 --> 07:17:38,080 HERE'S A TABLE COMPARING 10239 07:17:38,080 --> 07:17:40,840 AGE-ADJUSTED PROTEIN LEVELS 10240 07:17:40,840 --> 07:17:42,080 BETWEEN THE 600 SICKLE CELL 10241 07:17:42,080 --> 07:17:47,240 TRAIT AND 600 NON-CARRIERS. 10242 07:17:47,240 --> 07:17:52,080 SO THE P VALUE THRESHOLD OF 1500 10243 07:17:52,080 --> 07:17:54,840 PROTEINS THERE'S A TOTAL OF 35 10244 07:17:54,840 --> 07:17:56,280 PROTEINS SIGNIFICANTLY 10245 07:17:56,280 --> 07:17:57,680 ASSOCIATED WITH SICKLE TRAIT 10246 07:17:57,680 --> 07:17:57,920 STATUS. 10247 07:17:57,920 --> 07:18:02,120 AND WE CAN SEE THE TOP TWO 10248 07:18:02,120 --> 07:18:11,280 PROTEINS ARE THE CHEMO KINES AND 10249 07:18:11,280 --> 07:18:13,920 THE INJURY MOLECULE 1 WHICH 10250 07:18:13,920 --> 07:18:16,040 ALONG WITH OTHER PROTEINS 10251 07:18:16,040 --> 07:18:18,480 HIGHLIGHTED IN GREEN SUCH AS UR 10252 07:18:18,480 --> 07:18:22,480 AND MCP1 HAVE BEEN PREVIOUSLY 10253 07:18:22,480 --> 07:18:23,200 ASSOCIATED WITH BOTH 10254 07:18:23,200 --> 07:18:24,360 INFLAMMATORY AND KIDNEY DISEASES 10255 07:18:24,360 --> 07:18:29,920 MORE GENERALLY. 10256 07:18:29,920 --> 07:18:33,800 HIGHLIGHTS IN RED ARE OTHER 10257 07:18:33,800 --> 07:18:38,600 PROTEINS RELATED TO RED CELL 10258 07:18:38,600 --> 07:18:41,000 MORPH O 10259 07:18:41,000 --> 07:18:41,600 MORPHO 10260 07:18:41,600 --> 07:18:44,880 MORPHOLOGY AND SEVERAL OF THE 10261 07:18:44,880 --> 07:18:48,960 TOP PROTEINS DID REMAIN 10262 07:18:48,960 --> 07:18:50,320 SIGNIFICANTLY ASSOCIATED WITH 10263 07:18:50,320 --> 07:18:52,640 SICKLE CELL TRAIT EVEN AFTER 10264 07:18:52,640 --> 07:18:55,320 ADJUSTING FOR BASELINE EGFR OR 10265 07:18:55,320 --> 07:19:03,320 KIDNEY FUNCTION. 10266 07:19:03,320 --> 07:19:07,040 NEXT WE CREATED A PROTEIN RISK 10267 07:19:07,040 --> 07:19:08,560 SCORE FROM THE TOP SICKLE TRADE 10268 07:19:08,560 --> 07:19:10,600 ASSOCIATED PROTEINS AND THEN 10269 07:19:10,600 --> 07:19:13,600 TESTED WHETHER THE SICKLE TRAIT 10270 07:19:13,600 --> 07:19:17,440 PROTEIN RISK SCORE MEASURED AT 10271 07:19:17,440 --> 07:19:20,640 BASELINE PREDICTS FUTURE KIDNEY 10272 07:19:20,640 --> 07:19:23,080 DISEASE OUTCOMES ASSESSED 15 10273 07:19:23,080 --> 07:19:33,440 YEARS LATER IN WHI. 10274 07:19:34,480 --> 07:19:38,600 AND AT LEAST THERE'S SOME 10275 07:19:38,600 --> 07:19:40,560 PRELIMINARY EVIDENCE TO SUGGEST 10276 07:19:40,560 --> 07:19:42,160 THAT THIS SICKLE TRAIT PROTEIN 10277 07:19:42,160 --> 07:19:45,400 RISK SCORE WHEN ADJUSTED FOR 10278 07:19:45,400 --> 07:19:48,720 BASELINE AGE AND EGFR PREDICTED 10279 07:19:48,720 --> 07:19:51,360 THE DECLINE IN KIDNEY FUNCTION 10280 07:19:51,360 --> 07:19:52,560 AS WELL AS INCIDENT END STAGE 10281 07:19:52,560 --> 07:20:01,120 KIDNEY DISEASE. 10282 07:20:01,120 --> 07:20:03,960 SO IN SUMMARY WE SHOW SOME 10283 07:20:03,960 --> 07:20:05,920 PRELIMINARY ANALYSIS IDENTIFYING 10284 07:20:05,920 --> 07:20:08,600 A NUMBER OF PLASMA PROTEINS 10285 07:20:08,600 --> 07:20:11,200 ASSOCIATED WITH SICKLE TRAIT. 10286 07:20:11,200 --> 07:20:14,600 SOME OF WHICH MAY ULTIMATELY BE 10287 07:20:14,600 --> 07:20:17,320 INFORMATIVE FOR SICKLE 10288 07:20:17,320 --> 07:20:22,680 ASSOCIATED NEPHROPATHY AND 10289 07:20:22,680 --> 07:20:23,360 CARRIERS AS WELL AS PATIENTS 10290 07:20:23,360 --> 07:20:26,040 WITH SICKLE CELL DISEASE. 10291 07:20:26,040 --> 07:20:27,680 THE GENERATION OF ADDITIONAL 10292 07:20:27,680 --> 07:20:30,040 MULTI-OMICS DATA AND 10293 07:20:30,040 --> 07:20:34,880 METABOLOMICS AND METHYLATION AND 10294 07:20:34,880 --> 07:20:38,320 IN THE CONTROL SAMPLE ULTIMATELY 10295 07:20:38,320 --> 07:20:40,360 MADE ALLOW FURTHER INTEGRATIVE 10296 07:20:40,360 --> 07:20:43,000 ANALYSIS INTO INFORM MECHANISMS 10297 07:20:43,000 --> 07:20:46,680 UNDERLYING BOTH SICKLE TRAIT AND 10298 07:20:46,680 --> 07:20:48,680 SICKLE DISEASE AS RELATIONSHIP 10299 07:20:48,680 --> 07:20:49,240 TO OTHER CLINIC TRAITS AND 10300 07:20:49,240 --> 07:20:59,440 OUTCOMES. 10301 07:21:17,400 --> 07:21:20,040 AND LOOKING AT THE TOP MED 10302 07:21:20,040 --> 07:21:23,160 PROGRAM IN HEMATOLOGY AND SICKLE 10303 07:21:23,160 --> 07:21:26,600 WORKING GROUPS AND NHLBI FOR 10304 07:21:26,600 --> 07:21:27,200 MAKING THIS PROJECT POSSIBLE. 10305 07:21:27,200 --> 07:21:37,400 THANK YOU. 10306 07:22:10,720 --> 07:22:16,400 >> THINK THE DATA WE PRESENT 10307 07:22:16,400 --> 07:22:20,040 HERE IS FAIRLY PRELIMINARY AND 10308 07:22:20,040 --> 07:22:24,400 STILL THE NEXT STEP IS REALLY TO 10309 07:22:24,400 --> 07:22:27,560 TEST ITS ROBUSTNESS AND 10310 07:22:27,560 --> 07:22:29,680 REPLICATION AND INDEPENDENT 10311 07:22:29,680 --> 07:22:29,920 SAMPLES. 10312 07:22:29,920 --> 07:22:35,680 PERSONALLY, I'M NOT AWARE OF 10313 07:22:35,680 --> 07:22:39,840 ASSUMING SAYING SOMETHING LIKE 10314 07:22:39,840 --> 07:22:44,760 FRACTOKINE IS MECHANISTICALLY 10315 07:22:44,760 --> 07:22:50,600 IMPORTANT OR I'M NOT AWARE OF 10316 07:22:50,600 --> 07:22:56,720 DRU 10317 07:22:56,720 --> 07:22:56,920 DRUGS. 10318 07:22:56,920 --> 07:23:07,400 >> THANK YOU FOR A GREAT TALK. 10319 07:23:09,160 --> 07:23:17,200 >> LET'S GROW -- GO TO OUR LAST 10320 07:23:17,200 --> 07:23:27,040 TALK OF THE DAY FOR ERIC EARLY 10321 07:23:27,040 --> 07:23:30,960 AND LOOKING AT GENOMIC-WIDE 10322 07:23:30,960 --> 07:23:33,960 ASSOCIATION OF EARLY ISCHEMIC 10323 07:23:33,960 --> 07:23:35,200 STROKE IN BRAZIL SICKLE CELL 10324 07:23:35,200 --> 07:23:36,200 DISEASE CONFIRMS. 10325 07:23:36,200 --> 07:23:38,280 >> THANK YOU FOR BEING HERE. 10326 07:23:38,280 --> 07:23:42,560 BEING THE LAST SPEAKER I KNOW 10327 07:23:42,560 --> 07:23:43,840 EVERYONE'S TIRED. 10328 07:23:43,840 --> 07:23:47,240 I'M A GENETICISTS AND I COME 10329 07:23:47,240 --> 07:23:50,640 FROM A PEDIATRIC ONCOLOGY AND 10330 07:23:50,640 --> 07:23:56,600 WHOLE GENOME SEQUENCING 10331 07:23:56,600 --> 07:24:06,960 BACKGR 10332 07:24:06,960 --> 07:24:12,440 BACKGROUND AND WE'RE A 10333 07:24:12,440 --> 07:24:15,640 NON-PROFIT RESEARCH INSTITUTE 10334 07:24:15,640 --> 07:24:19,240 AND WE WORKED WITH CHAPEL HILL 10335 07:24:19,240 --> 07:24:29,680 AND OTHER UNIVERSITIES. 10336 07:24:35,360 --> 07:24:38,440 AND STROKE BEING HIGHER AT UNDER 10337 07:24:38,440 --> 07:24:40,920 AGE 14 WITH HEMORRHAGIC BEING 10338 07:24:40,920 --> 07:24:51,440 MORE COMMON IN THEIR 20s AND 10339 07:24:55,400 --> 07:25:02,600 THERE'S A REVIEW AND GO TO THE 10340 07:25:02,600 --> 07:25:05,640 COHORT AND IN BLUE IS THE STROKE 10341 07:25:05,640 --> 07:25:16,040 FOR SICKLE CELL ANEMIA. 10342 07:25:26,240 --> 07:25:32,640 AND THE SICKLE HAS A HUGE 10343 07:25:32,640 --> 07:25:37,680 GENOTYPE IS IMPORTANT AND HBSS 10344 07:25:37,680 --> 07:25:40,840 HEADLINES HAVE THE HIGHEST 10345 07:25:40,840 --> 07:25:42,960 FACTORS AND THE BIGGEST FACTORS 10346 07:25:42,960 --> 07:25:44,960 ARE LISTED AND THE OTHERS BEYOND 10347 07:25:44,960 --> 07:25:47,920 THAT ARE MIXED. 10348 07:25:47,920 --> 07:25:50,600 THERE'S BEEN A LOT OF WORK IN 10349 07:25:50,600 --> 07:25:59,440 STUDIES FOR DECADES BUT THE GWAS 10350 07:25:59,440 --> 07:26:09,960 INCLUDE REALLY ONLY ONE AND WE 10351 07:26:10,440 --> 07:26:12,280 LOOKED AT THE GENES BUT THEY 10352 07:26:12,280 --> 07:26:20,600 HAVEN'T BEEN REPLICATED SINCE. 10353 07:26:20,600 --> 07:26:25,000 AND IT DID NOT REPLICATE THIS WE 10354 07:26:25,000 --> 07:26:26,600 THINK THERE'S A CLEAR KNOWLEDGE 10355 07:26:26,600 --> 07:26:35,200 GAP HERE. 10356 07:26:35,200 --> 07:26:39,200 AND THIS WAS ONE OF THE RESEARCH 10357 07:26:39,200 --> 07:26:44,760 PRIORITIES FOR THE RECIPIENT IN 10358 07:26:44,760 --> 07:26:49,880 EPIDEMIOLOGY STUDY PHASE 3 10359 07:26:49,880 --> 07:26:56,560 PROGRAM AND THERE'S A NATIONAL 10360 07:26:56,560 --> 07:26:58,520 COLLABORATION WITH RESEARCH 10361 07:26:58,520 --> 07:27:00,520 CENTERS IN THE U.S. AND SIX 10362 07:27:00,520 --> 07:27:03,400 CENTERS AND AT UNIVERSITIES IN 10363 07:27:03,400 --> 07:27:06,800 BRAZIL AND THESE BLOOD CENTERS 10364 07:27:06,800 --> 07:27:10,840 ARE THE CLINICS PARTICIPANTS 10365 07:27:10,840 --> 07:27:13,320 THAT CONTINUE THEIR CARE. 10366 07:27:13,320 --> 07:27:18,640 WE WERE ALSO LUCKY TO GET WHOLE 10367 07:27:18,640 --> 07:27:23,200 GENOME SEQUENCING BY TOP MED. 10368 07:27:23,200 --> 07:27:29,760 THIS INCLUDED ACROSS THE WHOLE 10369 07:27:29,760 --> 07:27:30,000 GENOME. 10370 07:27:30,000 --> 07:27:34,960 WE USED 30XA. 10371 07:27:34,960 --> 07:27:41,840 AND MINOR ALLELE FREQUENCIES AND 10372 07:27:41,840 --> 07:27:48,320 LEAVING ABOUT 18 MILLION SNPs 10373 07:27:48,320 --> 07:27:51,360 AND INDELS AND PRINCIPAL 10374 07:27:51,360 --> 07:27:52,640 COMPONENT WERE CALCULATED FOR 10375 07:27:52,640 --> 07:27:58,480 THE GENETIC BACKGROUND OF 10376 07:27:58,480 --> 07:28:09,000 INDIVIDUALS AND OF THE ROUGHLY 10377 07:28:16,320 --> 07:28:17,560 3,000 ENROLLED THE 500 WERE NOT 10378 07:28:17,560 --> 07:28:27,720 SEQUENCED. 10379 07:28:31,320 --> 07:28:32,960 FOR VARIOUS TECHNOLOGY REASONS 10380 07:28:32,960 --> 07:28:36,720 THE DATA HAD PC ISSUES AND TOOLS 10381 07:28:36,720 --> 07:28:40,000 WERE EXCLUDED AND THEN WE DID 10382 07:28:40,000 --> 07:28:43,840 FOCUS ON THE HOMO ZYGOTES AND 10383 07:28:43,840 --> 07:28:46,240 THIS IS THE FIRST ROUND OF 10384 07:28:46,240 --> 07:28:49,000 STUDIES WE WANTED THE STRONGEST 10385 07:28:49,000 --> 07:28:51,000 SIGNAL BECAUSE 1,000 INDIVIDUALS 10386 07:28:51,000 --> 07:28:52,800 IS A LOT IN THE CONTEXT OF THE 10387 07:28:52,800 --> 07:28:55,480 FIELD BUT IN THE CONTEXT OF GWAS 10388 07:28:55,480 --> 07:28:56,160 IT'S FAIRLY SMALL. 10389 07:28:56,160 --> 07:29:00,320 WE WANTED TO MAKE SURE THE 10390 07:29:00,320 --> 07:29:02,680 DISEASE STRENGTH WAS STRONG AND 10391 07:29:02,680 --> 07:29:09,480 SO WE DID FOCUS ON HOMO ZYGOTES. 10392 07:29:09,480 --> 07:29:12,520 THE FINAL BOX HERE WE DID ALSO 10393 07:29:12,520 --> 07:29:14,720 EXCLUDE 230 INDIVIDUALS WHO 10394 07:29:14,720 --> 07:29:19,240 EXPERIENCED NO STROKE AROUND 10395 07:29:19,240 --> 07:29:21,440 REPORTED NO STROKE. 10396 07:29:21,440 --> 07:29:25,240 AND EITHER UNDERGOING PRODUCT 10397 07:29:25,240 --> 07:29:27,680 TRANSFUSION THERAPIES OR HAD A 10398 07:29:27,680 --> 07:29:30,920 NORMAL TRANS CRANIAL DOPPLER AND 10399 07:29:30,920 --> 07:29:36,720 OUR REASONING WAS TO TRY TO MAKE 10400 07:29:36,720 --> 07:29:41,840 SURE THAT WE HAD A STRONG 10401 07:29:41,840 --> 07:29:45,200 GENETIC SIGNAL AND IN THE 10402 07:29:45,200 --> 07:29:50,280 CONTROL CASE INDIVIDUALS HAVE 10403 07:29:50,280 --> 07:29:56,800 HIGHER RISK OF STROKE AND 10404 07:29:56,800 --> 07:29:59,080 ULTIMATELY WE WERE LEFT WITH A 10405 07:29:59,080 --> 07:30:00,640 STUDY COHORT OF 1,300 10406 07:30:00,640 --> 07:30:10,880 PARTICIPANTS. 10407 07:30:22,000 --> 07:30:23,200 AND THIS WAS WELL REPRESENTED 10408 07:30:23,200 --> 07:30:25,440 ACROSS THE CENTERS ON THE RIGHT 10409 07:30:25,440 --> 07:30:32,440 YOU SEE THE BREAKDOWNS AND 10410 07:30:32,440 --> 07:30:35,280 NUMBER OF INDIVIDUALS WITH 10411 07:30:35,280 --> 07:30:45,640 STROKE ON THE Y AXIS. 10412 07:30:46,080 --> 07:30:52,480 FOR THIS REASON WE WANTED TO 10413 07:30:52,480 --> 07:30:53,920 ADDRESS THE COMPONENT AND DIDN'T 10414 07:30:53,920 --> 07:30:56,280 WANT TO EXCLUDE PEOPLE. 10415 07:30:56,280 --> 07:30:59,720 WE ENDED UP IMPLEMENTING A COX 10416 07:30:59,720 --> 07:31:10,280 PROPORTIONAL HAZARDS MODEL AND 10417 07:31:11,720 --> 07:31:17,080 IT MEASURES DIFFERENCES SO IT'S 10418 07:31:17,080 --> 07:31:25,240 COMMON THE RESPONSE IS TIME FOR 10419 07:31:25,240 --> 07:31:30,800 STROKE FOR CENSORING ENROLLMENT 10420 07:31:30,800 --> 07:31:35,000 OR LAST VISIT AND LIKE I 10421 07:31:35,000 --> 07:31:36,360 MENTIONED THE TOP 10 PRINCIPAL 10422 07:31:36,360 --> 07:31:41,880 COMPONENTS OF THE GENETIC 10423 07:31:41,880 --> 07:31:44,040 ANCESTRY UNRELATED TO THE 10424 07:31:44,040 --> 07:31:49,360 DISEASE AND STROKE WERE PART OF 10425 07:31:49,360 --> 07:31:52,520 THE CONTROL GROUP. 10426 07:31:52,520 --> 07:32:03,040 THIS IS A VERY MIXED POPULATION. 10427 07:32:04,960 --> 07:32:09,240 THE Y AXIS AND THE LOWER THE P 10428 07:32:09,240 --> 07:32:09,920 VALUE THE HIGHER YOU ARE ON THE 10429 07:32:09,920 --> 07:32:11,240 Y AXIS. 10430 07:32:11,240 --> 07:32:16,440 THE DOTTED LINE REPRESENTED 10431 07:32:16,440 --> 07:32:20,320 GENOME WIDE SIGNIFICANCE AND 10432 07:32:20,320 --> 07:32:24,320 GENES ARE ANNOTATED HERE BY THE 10433 07:32:24,320 --> 07:32:26,400 GENES CLOSEST TO THE SNIP WITH 10434 07:32:26,400 --> 07:32:29,040 THE BEST OR LOWEST P VALUE THEN 10435 07:32:29,040 --> 07:32:33,520 I COLOR CODED THEM BASED ON 10436 07:32:33,520 --> 07:32:35,640 LITERATURE RESEARCH OF PREVIOUS 10437 07:32:35,640 --> 07:32:37,760 GENETIC STUDIES AND TURNED OUT 10438 07:32:37,760 --> 07:32:48,280 THREE OF THESE CDK18 HAD BEEN 10439 07:32:48,640 --> 07:32:51,480 LINKED TO STROKE BEFORE AND THE 10440 07:32:51,480 --> 07:32:54,480 GENES HAVE BEEN LINKED TO OTHER 10441 07:32:54,480 --> 07:32:55,120 CARDIOVASCULAR TRAITS I'LL SHOW 10442 07:32:55,120 --> 07:33:00,200 ON THE NEXT SLIDE. 10443 07:33:00,200 --> 07:33:03,480 WE FOUND A COUPLE THAT HAD NO 10444 07:33:03,480 --> 07:33:04,000 PREVIOUS ASSOCIATION WITH 10445 07:33:04,000 --> 07:33:07,760 STROKE. 10446 07:33:07,760 --> 07:33:14,720 AND THE GENOMIC CONTROL SUGGESTS 10447 07:33:14,720 --> 07:33:20,440 NO INFLATION OF P VALUE AND 10448 07:33:20,440 --> 07:33:21,400 THEY'RE SIGNAL NOT JUST NOISE 10449 07:33:21,400 --> 07:33:30,920 FROM OUR MODELLING. 10450 07:33:30,920 --> 07:33:36,680 HERE I'M SLOWING THE GENES AND 10451 07:33:36,680 --> 07:33:42,480 RELATIVE EFFECTS AND THEY HAVE A 10452 07:33:42,480 --> 07:33:44,680 RATIO OF BASED RISK AND ERROR 10453 07:33:44,680 --> 07:33:55,080 AND THEN THE LITERATURE. 10454 07:33:57,880 --> 07:34:02,720 AND THERE'S PEDIATRIC AND EARLY 10455 07:34:02,720 --> 07:34:08,720 ONSET. 10456 07:34:08,720 --> 07:34:12,600 AND THE JAPANESE COHORT IS 10457 07:34:12,600 --> 07:34:13,640 WRITING A PAPER WITH A 10458 07:34:13,640 --> 07:34:16,520 U.S. COHORT AND THESE ARE 10459 07:34:16,520 --> 07:34:18,960 NON-SICKLE COHORTS. 10460 07:34:18,960 --> 07:34:21,360 THESE ARE EARLY ONSET NON-SICKLE 10461 07:34:21,360 --> 07:34:21,920 COHORTS. 10462 07:34:21,920 --> 07:34:25,280 NONE OF THE GENES LISTED HERE 10463 07:34:25,280 --> 07:34:25,880 HAVE BEEN LINKED TO SICKLE 10464 07:34:25,880 --> 07:34:36,120 SPECIFICALLY. 10465 07:34:38,360 --> 07:34:40,520 HERE YOU'RE SEEING A ZOOM IN OF 10466 07:34:40,520 --> 07:34:45,200 THE LOCUS. 10467 07:34:45,200 --> 07:34:48,200 UP TOP IS THE MODIFICATION WITH 10468 07:34:48,200 --> 07:34:56,520 THE COLOR ADDED TO ENHANCE THE 10469 07:34:56,520 --> 07:35:06,800 SNPs IN LINKAGE. 10470 07:35:08,080 --> 07:35:10,400 AND YOU CAN ADD LOW RISK 10471 07:35:10,400 --> 07:35:19,200 INDIVIDUALS AND RED REPRESENTS 10472 07:35:19,200 --> 07:35:29,600 HOMOZYGOUS INDIVIDUALS. 10473 07:35:31,000 --> 07:35:35,200 AND THERE'S PEDIATRIC SICKLE 10474 07:35:35,200 --> 07:35:36,720 ISCHEMIC STROKE AND THIS IS 10475 07:35:36,720 --> 07:35:38,520 SLIGHTLY MORE RARE TOWARDS THE 10476 07:35:38,520 --> 07:35:48,880 1% OBSERVED FREQUENCY. 10477 07:35:53,200 --> 07:35:58,200 SINCE WE HAVE 14 INDEPENDENT 10478 07:35:58,200 --> 07:36:01,560 RISK LOCI THERE WEREN'T A LOT OF 10479 07:36:01,560 --> 07:36:04,840 INCREASED RISK BUT THE GROUPING 10480 07:36:04,840 --> 07:36:12,160 I'M PRESENTING HERE SHOWS 10481 07:36:12,160 --> 07:36:16,320 INDIVIDUALS WITH ZERO RISK 10482 07:36:16,320 --> 07:36:16,560 ALLELES. 10483 07:36:16,560 --> 07:36:27,080 ONE, TWO, THREE, FOUR OR MORE. 10484 07:36:35,720 --> 07:36:40,680 AND TAKING A STEP BACK TO A MORE 10485 07:36:40,680 --> 07:36:45,320 PHYSIO LOGIC AND PHYSIOLOGICAL 10486 07:36:45,320 --> 07:36:54,440 SYSTEMS, AN ENRICHMENT TEST CAN 10487 07:36:54,440 --> 07:36:55,880 SHOW CANDIDATES BASED ON VARIOUS 10488 07:36:55,880 --> 07:37:01,000 LINES OF EVIDENCE AND THE 10489 07:37:01,000 --> 07:37:02,000 OVERREPRESENTATION OF THE GENE 10490 07:37:02,000 --> 07:37:04,200 IN PARTICULAR GENE SETS MAY 10491 07:37:04,200 --> 07:37:06,880 SUGGEST THAT VARIANTS IN THOSE 10492 07:37:06,880 --> 07:37:08,680 GENES OR NEAR THOSE GENES ARE 10493 07:37:08,680 --> 07:37:18,280 DISRUPTING THESE PATHWAYS. 10494 07:37:18,280 --> 07:37:20,680 AND YOU CAN HAVE THEM ENRICHED 10495 07:37:20,680 --> 07:37:24,520 IN THE PATHWAY AND THERE'S A 10496 07:37:24,520 --> 07:37:28,160 MEMBRANE PARTICULARLY INVOLVED 10497 07:37:28,160 --> 07:37:32,360 OUTREACH OF ENRICHMENT AND 10498 07:37:32,360 --> 07:37:32,880 HEMOGLOBIN AND THE BLOOD 10499 07:37:32,880 --> 07:37:43,040 PRESSURE. 10500 07:37:44,440 --> 07:37:47,240 AND YOU CAN SELECT THIS AS 10501 07:37:47,240 --> 07:37:52,280 APPROPRIATE AND WE EXPECT TO SEE 10502 07:37:52,280 --> 07:37:57,720 EVIDENCE OF VARIANTS ASSOCIATED 10503 07:37:57,720 --> 07:37:59,720 WITH STROKE ASSOCIATED WITH 10504 07:37:59,720 --> 07:38:00,560 ASSOCIATION WITH GENES 10505 07:38:00,560 --> 07:38:02,240 ASSOCIATED WITH STROKE AND 10506 07:38:02,240 --> 07:38:04,400 SIMILAR WE DO AND WE SEE 10507 07:38:04,400 --> 07:38:06,800 ENRICHMENT OF THE 18 CANDIDATE 10508 07:38:06,800 --> 07:38:07,000 GENES. 10509 07:38:07,000 --> 07:38:09,520 I LOOKED FOR OVER REPRESENTATION 10510 07:38:09,520 --> 07:38:10,640 OF THOSE GENES WITHIN GENE SETS 10511 07:38:10,640 --> 07:38:13,160 AFFILIATED WITH GENE EXPRESSION 10512 07:38:13,160 --> 07:38:14,400 IN THE TISSUES. 10513 07:38:14,400 --> 07:38:17,960 THAT MEANS IN THIS CASE IN THE 10514 07:38:17,960 --> 07:38:22,360 HYPOTHALAMUS IN THE FAR LEFT I'M 10515 07:38:22,360 --> 07:38:24,480 SEEING SIGNIFICANT FALSE 10516 07:38:24,480 --> 07:38:27,880 DISCOVERY RATE AND MULTIPLE 10517 07:38:27,880 --> 07:38:29,120 HYPOTHESIS AND OVER 10518 07:38:29,120 --> 07:38:31,240 REPRESENTATION OF THE 18 10519 07:38:31,240 --> 07:38:33,840 CANDIDATE GENES AND GENES THAT 10520 07:38:33,840 --> 07:38:38,360 ARE DIFFERENTIALLY EXPRESSED IN 10521 07:38:38,360 --> 07:38:41,360 THE HYPOTHALAMUS SUGGESTING 10522 07:38:41,360 --> 07:38:45,280 THESE TISSUES ARE WHAT IS 10523 07:38:45,280 --> 07:38:48,120 MEDIATING THE PATHOPHYSIOLOGY. 10524 07:38:48,120 --> 07:38:52,880 WE ALSO SEE STRONG SIGNAL IN THE 10525 07:38:52,880 --> 07:38:54,120 ARTERIES AND TIBIAL AND I'M NOT 10526 07:38:54,120 --> 07:39:04,640 SURE WHAT TO THINK ABOUT THAT. 10527 07:39:09,800 --> 07:39:13,560 AND IN SUMMARY WE DISCOVERED 10528 07:39:13,560 --> 07:39:17,200 EARLY ONSET STROKE GENES 10529 07:39:17,200 --> 07:39:18,520 PREVIOUSLY KNOWN TO BE RELATED 10530 07:39:18,520 --> 07:39:20,560 TO ISCHEMIC STROKE RISK. 10531 07:39:20,560 --> 07:39:27,240 WE REPLICATED THEM IN THIS 10532 07:39:27,240 --> 07:39:32,520 BRAZIL COHORT AS WELL 10533 07:39:32,520 --> 07:39:37,520 DISCOVERING LOCI AND THE 10534 07:39:37,520 --> 07:39:40,640 ENRICHMENT RESULTS SHOWED 10535 07:39:40,640 --> 07:39:43,440 EXPRESSION IN ARTERIES AND 10536 07:39:43,440 --> 07:39:46,040 THALAMUS AND AS USUAL WITH GWAS 10537 07:39:46,040 --> 07:39:50,720 THE NEXT STEP IS VALIDATION AND 10538 07:39:50,720 --> 07:39:51,840 CALCULATING POLY GENIC RISK 10539 07:39:51,840 --> 07:39:54,840 SCORES AND VALIDATING NEW 10540 07:39:54,840 --> 07:39:57,400 COHORTS ESPECIALLY IN AFRICAN 10541 07:39:57,400 --> 07:39:57,840 COHORT. 10542 07:39:57,840 --> 07:39:59,720 I'M ALSO PERSONALLY INTERESTED 10543 07:39:59,720 --> 07:40:03,920 IN THE ROLE OF NON-ENCODING 10544 07:40:03,920 --> 07:40:06,200 VARIANT WITH METHYLATION AND 10545 07:40:06,200 --> 07:40:07,360 GENE EXPRESSION CHANGES AND 10546 07:40:07,360 --> 07:40:09,600 ALWAYS INTERESTED IN 10547 07:40:09,600 --> 07:40:12,080 COLLABORATION ON THAT AS WELL AS 10548 07:40:12,080 --> 07:40:12,640 METABOLOMICS. 10549 07:40:12,640 --> 07:40:15,240 NONE OF THIS WORK WOULD HAVE 10550 07:40:15,240 --> 07:40:16,720 BEEN POSSIBLE WITHOUT THE 10551 07:40:16,720 --> 07:40:27,160 INCREDIBLE COLLABORATORS. 10552 07:40:35,280 --> 07:40:42,920 AND APOLOGIES I DON'T SPEAK 10553 07:40:42,920 --> 07:40:43,880 PORTUGUESE ON THE NAMES. 10554 07:40:43,880 --> 07:40:45,920 >> THANK YOU FOR THE LAST TALK. 10555 07:40:45,920 --> 07:40:53,320 THANKS TO THE AUDIENCE TOO AND 10556 07:40:53,320 --> 07:40:55,080 THERE'S A COUPLE QUESTIONS IN 10557 07:40:55,080 --> 07:40:56,440 THE COMMENT SECTION. 10558 07:40:56,440 --> 07:40:57,520 CAN YOU SEE THEM OR DO YOU WANT 10559 07:40:57,520 --> 07:41:07,720 ME TO READ? 10560 07:41:14,720 --> 07:41:17,120 >> IT'S IMPORTANT TO TRACK. 10561 07:41:17,120 --> 07:41:20,760 IT HAS EFFECTS. 10562 07:41:20,760 --> 07:41:22,560 SO STROKE WAS EXTRACTED FROM THE 10563 07:41:22,560 --> 07:41:23,800 MEDICAL RECORDS. 10564 07:41:23,800 --> 07:41:27,760 I'M REALLY INTERESTED IN MRI. 10565 07:41:27,760 --> 07:41:32,760 I WAS RECENTLY CHATTING WITH A 10566 07:41:32,760 --> 07:41:36,400 COLLEGIATE DUKE ABOUT MACHINE 10567 07:41:36,400 --> 07:41:41,440 LEARNING OF MRIs PREDICTING THE 10568 07:41:41,440 --> 07:41:44,280 SYSTEMIC BLOOD FLOW CHANGES IN 10569 07:41:44,280 --> 07:41:45,560 CERTAIN DISEASES AROUND IN THIS 10570 07:41:45,560 --> 07:41:48,200 CASE I THINK MRI WOULD BE A REAL 10571 07:41:48,200 --> 07:41:51,800 INTERESTING RESPONSE TO STUDY. 10572 07:41:51,800 --> 07:41:53,160 >> THERE'S A QUESTION FROM 10573 07:41:53,160 --> 07:41:54,960 DR. GUP TA. 10574 07:41:54,960 --> 07:41:57,720 WHAT ARE YOUR THOUGHTS ABOUT 10575 07:41:57,720 --> 07:41:58,640 DOPAMINE-TARGETED GENES. 10576 07:41:58,640 --> 07:42:02,720 THOSE CAN BE RELEVANT TO 10577 07:42:02,720 --> 07:42:03,000 FUNCTION. 10578 07:42:03,000 --> 07:42:11,240 >> I AM NOT AN EXPERT. 10579 07:42:11,240 --> 07:42:14,760 I WILL RESPECTFULLY ASK OTHERS 10580 07:42:14,760 --> 07:42:16,360 TO INTERVENE AND I HAVEN'T SEEN 10581 07:42:16,360 --> 07:42:20,520 THIS ASSOCIATION UNLESS I'M 10582 07:42:20,520 --> 07:42:22,120 MISSING OR IT'S POPPING OUT TO 10583 07:42:22,120 --> 07:42:23,240 OTHERS ON THE CALL. 10584 07:42:23,240 --> 07:42:26,800 THAT'S A GOOD THING TO FOLLOW-UP 10585 07:42:26,800 --> 07:42:27,240 ON. 10586 07:42:27,240 --> 07:42:27,720 THANK YOU. 10587 07:42:27,720 --> 07:42:28,800 >> OKAY. 10588 07:42:28,800 --> 07:42:35,240 I DON'T SEE ANY OTHER ADDITIONAL 10589 07:42:35,240 --> 07:42:39,040 COMME 10590 07:42:39,040 --> 07:42:39,280 COMMENTS. 10591 07:42:39,280 --> 07:42:41,640 THANK YOU VERY MUCH AGAIN FOR 10592 07:42:41,640 --> 07:42:43,240 THE WONDERFUL TALK AND SESSION 10593 07:42:43,240 --> 07:42:45,320 AND THANK YOU, AUDIENCE, FOR 10594 07:42:45,320 --> 07:42:51,880 HANGING IN THERE FOR THE LAST 10595 07:42:51,880 --> 07:42:52,080 TALK. 10596 07:42:52,080 --> 07:42:55,120 WE HAVE TOMORROW ANOTHER FULL 10597 07:42:55,120 --> 07:42:59,240 DAY FOR TALKS THAT START AT 9:00 10598 07:42:59,240 --> 07:43:02,760 TOMORROW MORNING IN SYMPOSIUM 5. 10599 07:43:02,760 --> 07:43:04,560 THE THEME FOR TOMORROW WILL BE 10600 07:43:04,560 --> 07:43:08,120 PAIN AND SICKLE CELL WHICH IS A 10601 07:43:08,120 --> 07:43:13,400 MAJOR ASPECT OF SICKLE DISEASE 10602 07:43:13,400 --> 07:43:16,640 AND YOU'LL BE HAPPY TO HEAR 10603 07:43:16,640 --> 07:43:17,720 TALKS TOMORROW AND IT STARTS AT 10604 07:43:17,720 --> 07:43:22,920 10:00 TOMORROW MORNING AND 10605 07:43:22,920 --> 07:43:26,760 HOPEFULLY WE'LL SEE YOU TOMORROW 10606 07:43:26,760 --> 07:43:29,920 AT 9:00. 10607 07:43:29,920 --> 07:43:35,240 I DON'T HAVE ANYTHING ELSE. 10608 07:43:35,240 --> 07:43:36,960 ALEX, DO YOU HAVE LOGISTICS TO 10609 07:43:36,960 --> 07:43:38,640 TALK ABOUT FOR TOMORROW? 10610 07:43:38,640 --> 07:43:43,000 >> NOT AT THIS TIME BUT A 10611 07:43:43,000 --> 07:43:47,000 REMINDER TO USE YOUR DAILY LOG 10612 07:43:47,000 --> 07:43:49,840 IN AND THE SPEAKERS PLEASE 10613 07:43:49,840 --> 07:43:51,880 REMEMBER TO LOG IN EARLY 10614 07:43:51,880 --> 07:43:53,480 TOMORROW MORNING TO JOIN US AND 10615 07:43:53,480 --> 07:43:54,080 THANK YOU AGAIN AND WE'LL SEE 10616 07:43:54,080 --> 07:43:57,640 YOU TOMORROW. 10617 07:43:57,640 --> 07:43:59,600 >> THANKS, ALEX. 10618 07:43:59,600 --> 07:44:05,520 THANK YOU AGAIN FOR ALL THE 10619 07:44:05,520 --> 07:44:07,240 SPEAKERS FOR TODAY AND LOOK 10620 07:44:07,240 --> 07:44:08,960 FORWARD TO SEEING YOU TOMORROW 10621 07:44:08,960 --> 07:44:10,040 FOR ANOTHER FULL DAY OF 10622 07:44:10,040 --> 07:44:11,240 WONDERFUL TALKS. 10623 07:44:11,240 --> 00:00:00,000 SEE YOU THEN.