1 00:00:05,480 --> 00:00:09,240 I WOULD LIKE TO WELCOME YOU ALL 2 00:00:09,240 --> 00:00:12,480 TO THIS VIRTUAL WORKSHOP CALLED 3 00:00:12,480 --> 00:00:15,400 BUILDING A DIVERSE COMMUNITY FOR 4 00:00:15,400 --> 00:00:19,760 THE DOWN SYNDROME RESEARCH. 5 00:00:19,760 --> 00:00:22,280 BEFORE WE GET STARTED ON THIS 6 00:00:22,280 --> 00:00:25,360 EXCITING LINE UP OF FABULOUS 7 00:00:25,360 --> 00:00:27,560 SPEAKERS I WOULD LIKE TO GET THE 8 00:00:27,560 --> 00:00:29,920 IMPORTANT TASKS OF SHARING 9 00:00:29,920 --> 00:00:33,320 IMPORTANT LOGISTICS FOR THIS 10 00:00:33,320 --> 00:00:37,960 WORKSHOP. 11 00:00:37,960 --> 00:00:41,920 WE HAVE SCHEDULED THREE SESSIONS 12 00:00:41,920 --> 00:00:44,440 FOR EACH DAYS START WITH A 13 00:00:44,440 --> 00:00:47,200 WELCOME REMARKS FROM NIH'S 14 00:00:47,200 --> 00:00:50,320 LEADERSHIP TEAM DR. COURTNEY 15 00:00:50,320 --> 00:00:51,040 AKLIN. 16 00:00:51,040 --> 00:00:53,280 SESSION TWO WILL BE A FAMILY 17 00:00:53,280 --> 00:00:54,800 DISCUSSION. 18 00:00:54,800 --> 00:00:56,680 AND THE LAST SESSION WILL BE 19 00:00:56,680 --> 00:00:58,840 DISCUSSING HEALTH DISPARITIES IN 20 00:00:58,840 --> 00:01:00,680 DOWN SYNDROME ACROSS THE 21 00:01:00,680 --> 00:01:03,800 LIFE-SPAN WITH A FOCUS ON 22 00:01:03,800 --> 00:01:07,880 POLICIES, CONDITIONS AND CONSENT 23 00:01:07,880 --> 00:01:09,080 ISSUES. 24 00:01:09,080 --> 00:01:11,400 EACH SESSION MODERATOR WILL 25 00:01:11,400 --> 00:01:13,320 INTRODUCE THE SPEAKERS AND WE'LL 26 00:01:13,320 --> 00:01:15,000 HAVE A DISCUSSION AT THE END OF 27 00:01:15,000 --> 00:01:15,600 THE SESSION. 28 00:01:15,600 --> 00:01:18,400 WE HAVE BUILT IN 15 MINUTES OF 29 00:01:18,400 --> 00:01:19,960 COFFEE BREAKS IN BETWEEN THE 30 00:01:19,960 --> 00:01:26,280 SESSIONS AS WELL. 31 00:01:26,280 --> 00:01:30,160 THE SECOND DAY WILL START 32 00:01:30,160 --> 00:01:31,800 TOMORROW AGAIN AT NOON EASTERN 33 00:01:31,800 --> 00:01:32,360 TIME. 34 00:01:32,360 --> 00:01:34,880 WE'VE PLANNED ANOTHER EXCITING 35 00:01:34,880 --> 00:01:37,360 HALF OF A DAY FOCUSED ON 36 00:01:37,360 --> 00:01:43,120 LEARNING, HOW TO DIVERSIFY THE 37 00:01:43,120 --> 00:01:53,000 RESEARCH TEAMS AND NOT TO ALIEN 38 00:01:53,000 --> 00:01:54,800 YET THERE WILL BE BREAKS. 39 00:01:54,800 --> 00:01:56,320 SOME GENERAL REMINDERS. 40 00:01:56,320 --> 00:01:59,440 THIS MEETING IS BEING RECORDED 41 00:01:59,440 --> 00:02:01,760 AND A SUMMARY WILL BE POSTED ON 42 00:02:01,760 --> 00:02:03,640 THE WEBSITE. 43 00:02:03,640 --> 00:02:05,720 THE ZOOM SESSION FEATURES 44 00:02:05,720 --> 00:02:07,160 HOPEFULLY AFTER TWO YEARS OF 45 00:02:07,160 --> 00:02:09,480 LIVING IN THIS VIRTUAL WORLD WE 46 00:02:09,480 --> 00:02:13,040 HAVE BECOME EXPERT IN MUTING AND 47 00:02:13,040 --> 00:02:15,160 UNMUTING BUT JUST A REMINDER 48 00:02:15,160 --> 00:02:17,840 PLEASE UNMUTE WHEN YOU'RE READY 49 00:02:17,840 --> 00:02:19,480 TO ASK A QUESTION AND ALSO FOR 50 00:02:19,480 --> 00:02:21,360 THE SPEAKERS WHEN PRESENTING 51 00:02:21,360 --> 00:02:23,600 PLEASE TURN ON YOUR VIDEOS AND 52 00:02:23,600 --> 00:02:25,600 ALL OTHERS CAN USE THE CHAT 53 00:02:25,600 --> 00:02:27,040 FUNCTION TO ASK QUESTIONS AS 54 00:02:27,040 --> 00:02:28,320 WELL. 55 00:02:28,320 --> 00:02:30,440 AND VERY IMPORTANT FOR THIS 56 00:02:30,440 --> 00:02:34,720 SESSION WE ARE FORTUNATE TO BE 57 00:02:34,720 --> 00:02:35,920 PROVIDING LIVE SIMULTANEOUS 58 00:02:35,920 --> 00:02:37,120 SPANISH INTERPRETATION. 59 00:02:37,120 --> 00:02:39,640 SO FOR THE SPEAKERS PLEASE SPEAK 60 00:02:39,640 --> 00:02:42,680 A LITTLE SLOWER THAN USUAL. 61 00:02:42,680 --> 00:02:45,120 IF YOU WISH TO LISTEN TO THE 62 00:02:45,120 --> 00:02:47,480 AUDIO IN ENGLISH PLEASE SELECT 63 00:02:47,480 --> 00:02:50,360 THE GLOBE AT THE BOTTOM OF YOUR 64 00:02:50,360 --> 00:02:54,120 ZOOM WINDOW WHERE IT SAYS 65 00:02:54,120 --> 00:02:55,160 INTERPRETATION AND SELECT 66 00:02:55,160 --> 00:02:55,560 ENGLISH. 67 00:02:55,560 --> 00:02:58,440 THERE IS ALSO LIFE TRANSCRIPT 68 00:02:58,440 --> 00:03:08,040 FOR NONSPANISH REQUESTS. 69 00:03:08,040 --> 00:03:18,400 [ SPEAKING SPANISH ] 70 00:03:20,520 --> 00:03:21,440 >> THANK YOU. 71 00:03:21,440 --> 00:03:25,480 AND SO HERE IS THE WEBSITE WHICH 72 00:03:25,480 --> 00:03:27,480 WILL HAVE THE RECORDINGS POSTED 73 00:03:27,480 --> 00:03:29,080 OF THE LISTENING SESSIONS THAT 74 00:03:29,080 --> 00:03:31,080 WE CONDUCTED IN MAY OF THIS YEAR 75 00:03:31,080 --> 00:03:33,520 WHICH HAS INFORMED OUR WORKSHOP 76 00:03:33,520 --> 00:03:36,400 AND THE EXECUTIVE SUMMARY OF 77 00:03:36,400 --> 00:03:38,640 THIS MEETING AS WELL, THE VIDEO 78 00:03:38,640 --> 00:03:40,000 CAST RECORDINGS WILL BE POSTED 79 00:03:40,000 --> 00:03:41,200 ON THAT WEBSITE. 80 00:03:41,200 --> 00:03:44,520 AND JUST FOR EVERYONE'S 81 00:03:44,520 --> 00:03:47,200 POSITIONS THE DS CONNECT WEBSITE 82 00:03:47,200 --> 00:03:53,720 IS ALSO LISTED HERE. 83 00:03:53,720 --> 00:03:55,640 SO THE DOWN SYNDROME WORKING 84 00:03:55,640 --> 00:03:57,120 GROUP COULD NOT HAVE 85 00:03:57,120 --> 00:03:58,440 ACCOMPLISHED WHAT WE'VE BEEN 86 00:03:58,440 --> 00:04:00,360 DOUG FOR SEVEN YEARS WITHOUT THE 87 00:04:00,360 --> 00:04:03,680 HELP AND SUPPORT OF THE PARTNERS 88 00:04:03,680 --> 00:04:05,120 INCLUDING 14 NIH INSTITUTE 89 00:04:05,120 --> 00:04:08,280 PARTNERS. 90 00:04:08,280 --> 00:04:11,160 ALSO A SHOUT OUT TO THE INCLUDE 91 00:04:11,160 --> 00:04:16,320 LEADERSHIP TEAMS OF DR. TABAK, 92 00:04:16,320 --> 00:04:19,120 BIANCHI AND GIBBONS WHO KEEP US 93 00:04:19,120 --> 00:04:20,640 MOTIVATED AND INSPIRED. 94 00:04:20,640 --> 00:04:23,920 AND A HUGE SHOUT OUT TO THE 95 00:04:23,920 --> 00:04:26,920 PLANNING COMMITTEE ESPECIALLY 96 00:04:26,920 --> 00:04:31,640 MS. LINDA GARCIA. 97 00:04:31,640 --> 00:04:35,120 AND DR. LAURA LONG -- AND ALL OF 98 00:04:35,120 --> 00:04:37,040 THE SPEAKERS WHO WERE PATIENT 99 00:04:37,040 --> 00:04:38,600 WITH ALL OF OUR E-MAILS AND 100 00:04:38,600 --> 00:04:40,000 REQUESTS. 101 00:04:40,000 --> 00:04:44,760 SO WITHOUT FURTHER ADO LET ME 102 00:04:44,760 --> 00:04:47,240 INTRODUCE DR. COURTNEY AKLIN WHO 103 00:04:47,240 --> 00:04:51,280 IS THE ACTING ASSOCIATE DEPUTY 104 00:04:51,280 --> 00:04:52,480 DIRECTOR. 105 00:04:52,480 --> 00:04:54,480 DR. AKLIN SERVES AS THE SENIOR 106 00:04:54,480 --> 00:04:55,920 ADVISOR WITHIN THE IMMEDIATE 107 00:04:55,920 --> 00:04:58,600 OFFICE OF THE DIRECTOR WHERE SHE 108 00:04:58,600 --> 00:05:00,920 IS RESPONSIBLE FOR ADVISING ON A 109 00:05:00,920 --> 00:05:03,360 BROAD AREA OF CONFLICTS AND 110 00:05:03,360 --> 00:05:04,760 SENSITIVE ISSUES. 111 00:05:04,760 --> 00:05:07,200 PRIOR TO HER CURRENT POSITION 112 00:05:07,200 --> 00:05:08,880 DR. AKLIN SERVED IN A KEY 113 00:05:08,880 --> 00:05:11,320 LEADERSHIP ROLE AS THE CHIEF OF 114 00:05:11,320 --> 00:05:13,000 STAFF AT THE NATIONAL INSTITUTE 115 00:05:13,000 --> 00:05:16,160 ON MINORITY HEALTH AND HEALTH 116 00:05:16,160 --> 00:05:17,280 DISPARITY. 117 00:05:17,280 --> 00:05:22,360 WELCOME, DR. AKLIN. 118 00:05:22,360 --> 00:05:25,840 >> THANK YOU SO MUCH SUJATA FOR 119 00:05:25,840 --> 00:05:27,960 THAT INTRODUCTION AND WELCOME TO 120 00:05:27,960 --> 00:05:29,360 THE NIH INCLUDE WORKSHOP. 121 00:05:29,360 --> 00:05:31,800 BUILDING A DIVERSE COMMUNITY FOR 122 00:05:31,800 --> 00:05:34,120 DOWN SYNDROME RESEARCH. 123 00:05:34,120 --> 00:05:37,320 AS SUJATA MENTION SAID I'M 124 00:05:37,320 --> 00:05:40,800 DR. COURTNEY AKLIN AND A COCHAIR 125 00:05:40,800 --> 00:05:42,520 FOR THE INVESTIGATION OF 126 00:05:42,520 --> 00:05:47,600 CONDITIONS ACROSS THE LIFE-SPAN 127 00:05:47,600 --> 00:05:50,640 TO UNDERSTAND THE SYNDROME. 128 00:05:50,640 --> 00:05:56,240 BUT ON BEHALF OF MY COCHAIRS 129 00:05:56,240 --> 00:06:01,280 DR. BIANCHI AND DR. GARY GIBBONS 130 00:06:01,280 --> 00:06:03,240 AND MYSELF WE ARE THRILLED TO BE 131 00:06:03,240 --> 00:06:05,120 OPENING THIS TWO-DAY WORKSHOP ON 132 00:06:05,120 --> 00:06:06,320 A VERY IMPORTANT TOPIC. 133 00:06:06,320 --> 00:06:09,080 AS YOU MAY HAVE RECOGNIZED AS 134 00:06:09,080 --> 00:06:11,400 YOU WERE REGISTERING WE HAVE 135 00:06:11,400 --> 00:06:13,800 OVER 200 REGISTERED PARTICIPANTS 136 00:06:13,800 --> 00:06:16,040 INCLUDING SELF-ADVOCATES 137 00:06:16,040 --> 00:06:18,600 FAMILIES, RESEARCHERS, TRAINEES, 138 00:06:18,600 --> 00:06:20,160 MEMBERS OF DOWN SYNDROME 139 00:06:20,160 --> 00:06:21,280 ORGANIZATIONS, HEALTH CARE AND 140 00:06:21,280 --> 00:06:23,480 SERVICE PROVIDERS, EXPERTS IN 141 00:06:23,480 --> 00:06:25,400 DIVERSITY AND INCLUSION AND 142 00:06:25,400 --> 00:06:27,400 PROGRAM STAFF FROM ACROSS ALL OF 143 00:06:27,400 --> 00:06:28,360 NIH. 144 00:06:28,360 --> 00:06:31,480 INCLUDE WAS LAUNCHED IN 2018 IN 145 00:06:31,480 --> 00:06:33,320 RESPONSE TO A CONGRESSIONAL 146 00:06:33,320 --> 00:06:38,720 DIRECTIVE CALLING FOR A NEW 147 00:06:38,720 --> 00:06:40,360 TRANS RESEARCH INITIATIVE FOR 148 00:06:40,360 --> 00:06:41,800 PEOPLE WITH DOWN SYNDROME. 149 00:06:41,800 --> 00:06:45,320 NIH HAS INVESTED MORE THAN 150 00:06:45,320 --> 00:06:47,440 $183 MILLION IN OVER 200 151 00:06:47,440 --> 00:06:49,440 PROJECTS AND A WIDE VARIETY OF 152 00:06:49,440 --> 00:06:51,560 BASIC SCIENCE AND CLINICAL 153 00:06:51,560 --> 00:06:54,960 TOPICS. 154 00:06:54,960 --> 00:06:58,640 INCLUDE IS NOW COMPLETING ITS 155 00:06:58,640 --> 00:07:01,040 FIFTH YEAR AND FOCUSING ON 156 00:07:01,040 --> 00:07:03,600 EXPANDING THE INCLUSION OF 157 00:07:03,600 --> 00:07:04,920 INDIVIDUALS WITH DOWN SYNDROME. 158 00:07:04,920 --> 00:07:07,640 FROM DIVERSE BACKGROUNDS AND IN 159 00:07:07,640 --> 00:07:09,440 ORDER TO UNDERSTAND AND 160 00:07:09,440 --> 00:07:17,360 ELIMINATE HEALTH DISPARITIES AND 161 00:07:17,360 --> 00:07:24,280 ADVANCE HEALTH. 162 00:07:24,280 --> 00:07:26,200 TO ACHIEVE THESE GOALS WE NEED 163 00:07:26,200 --> 00:07:27,960 TO THINK BROADLY AND ENCOURAGE 164 00:07:27,960 --> 00:07:29,640 EVERYONE TO BE INNOVATIVE ABOUT 165 00:07:29,640 --> 00:07:31,960 THE WAYS TO INCLUDE UNDERSERVED 166 00:07:31,960 --> 00:07:33,640 POPULATIONS IN OUR RESEARCH 167 00:07:33,640 --> 00:07:35,600 ACTIVITIES. 168 00:07:35,600 --> 00:07:40,120 WE AIM TO ENGAGED THE VOICES OF 169 00:07:40,120 --> 00:07:41,600 SELF-ADVOCATES AND FAMILY 170 00:07:41,600 --> 00:07:42,680 MEMBERS AND WITH THE COMMUNITY 171 00:07:42,680 --> 00:07:45,560 TO STRENGTHEN OUR DIVERSITY AND 172 00:07:45,560 --> 00:07:46,920 INCLUSION AND ACCESSIBILITY 173 00:07:46,920 --> 00:07:47,480 PLANS. 174 00:07:47,480 --> 00:07:49,120 THIS WORKSHOP WHICH IS BUILDING 175 00:07:49,120 --> 00:07:52,120 OFF OF OUR LISTENING SESSIONS 176 00:07:52,120 --> 00:07:53,920 FROM MAY IS AN EXAMPLE OF OUR 177 00:07:53,920 --> 00:07:55,360 EFFORTS TO ENGAGED THE COMMUNITY 178 00:07:55,360 --> 00:07:56,560 TO LISTEN. 179 00:07:56,560 --> 00:07:59,720 TO LEARN AND TO TAKE ACTION. 180 00:07:59,720 --> 00:08:01,600 OVER THE NEXT TWO DAYS WE WILL 181 00:08:01,600 --> 00:08:04,000 LISTEN AND LEARN FROM 182 00:08:04,000 --> 00:08:05,200 SELF-ADVOCATES, FAMILIES AND 183 00:08:05,200 --> 00:08:07,000 RESEARCHERS ABOUT HOW TO 184 00:08:07,000 --> 00:08:10,200 EFFECTIVELY ENGAGE UNDERSERVED 185 00:08:10,200 --> 00:08:11,480 COMMUNITIES AND THE ACTIVITIES 186 00:08:11,480 --> 00:08:14,000 AND WHY THIS IS SO CRITICAL TO 187 00:08:14,000 --> 00:08:15,160 OUR RESEARCH MOVING FORWARD. 188 00:08:15,160 --> 00:08:18,080 ON BEHALF OF THE NIH AND INCLUDE 189 00:08:18,080 --> 00:08:19,400 LEADERSHIP THANK YOU TO ALL OF 190 00:08:19,400 --> 00:08:29,160 OUR ATTE ATTENDEES AND TO ADVAG 191 00:08:29,160 --> 00:08:30,680 THE SCIENCE IN THIS SPACE. 192 00:08:30,680 --> 00:08:32,280 YOUR DEDICATION TO INCLUDE IS 193 00:08:32,280 --> 00:08:34,280 MAKING A DIFFERENCE IN THE LIVES 194 00:08:34,280 --> 00:08:35,960 OF PEOPLE WITH DOWN SYNDROME AND 195 00:08:35,960 --> 00:08:36,960 THEIR FAMILIES. 196 00:08:36,960 --> 00:08:38,840 AND WITH THAT I WILL HAND IT 197 00:08:38,840 --> 00:08:41,240 BACK OVER TO DR. SUJATA OUR 198 00:08:41,240 --> 00:08:46,040 PROGRAM DIRECTOR AT NICHD AND 199 00:08:46,040 --> 00:08:47,880 THANK YOU ALL FOR BEING HERE. 200 00:08:47,880 --> 00:08:51,520 >> THANK YOU SO MUCH DR. AKLIN. 201 00:08:51,520 --> 00:08:53,360 APPRECIATE THE WELCOMING REMARKS 202 00:08:53,360 --> 00:08:55,400 AND YOU MENTIONED A LOT OF 203 00:08:55,400 --> 00:08:57,240 THINGS THAT IN MY SLIDES SO I 204 00:08:57,240 --> 00:09:01,880 WILL BE ABLE TO UTILIZE THAT TO 205 00:09:01,880 --> 00:09:03,360 GIVE BACK SOME OF THE TIME TO 206 00:09:03,360 --> 00:09:08,400 OTHER SPEAKERS. 207 00:09:08,400 --> 00:09:11,200 SO I ALREADY DISCUSSED THE 208 00:09:11,200 --> 00:09:13,400 SESSIONS SO TODAY'S SESSION 209 00:09:13,400 --> 00:09:16,360 FOLLOWING MY OVERVIEW WE WILL 210 00:09:16,360 --> 00:09:19,680 HAVE THREE SPEAKERS FOR THIS 211 00:09:19,680 --> 00:09:22,560 SESSION ONE WHERE MS. GARCIA 212 00:09:22,560 --> 00:09:24,920 WILL PROVIDE SOME READ OF THE 213 00:09:24,920 --> 00:09:29,640 LISTENING SESSION, DR. ARUNA 214 00:09:29,640 --> 00:09:32,480 NATARAJAN AND DR. MALIHA ILIAS 215 00:09:32,480 --> 00:09:34,560 WILL BE TELLING US ABOUT THE 216 00:09:34,560 --> 00:09:41,000 COMMUNITY ENGAGEMENT. 217 00:09:41,000 --> 00:09:43,560 THIS IS JUST THE OUTLINE OF MY 218 00:09:43,560 --> 00:09:47,360 TALK. 219 00:09:47,360 --> 00:09:49,240 SO I WILL BE DISCUSSING WHY 220 00:09:49,240 --> 00:09:50,920 WE'RE GATHERED HERE IN THIS 221 00:09:50,920 --> 00:09:52,880 VIRTUAL WORLD TO LEARN ABOUT 222 00:09:52,880 --> 00:09:56,280 BUILDING A DIVERSE DOWN SYNDROME 223 00:09:56,280 --> 00:09:57,320 RESEARCH COMMUNITY. 224 00:09:57,320 --> 00:09:59,680 FOR THOSE OF US WHO LIVE AND 225 00:09:59,680 --> 00:10:02,520 BREATHE AT NIH WE'RE PROUD TO BE 226 00:10:02,520 --> 00:10:04,720 PART OF THE WORLD'S LARGEST 227 00:10:04,720 --> 00:10:06,760 FUNDER OF BIOMEDICAL RESEARCH. 228 00:10:06,760 --> 00:10:09,960 NIH IS BASED IN BETHESDA, 229 00:10:09,960 --> 00:10:12,800 MARYLAND AND 90% OF THE FUNDS 230 00:10:12,800 --> 00:10:14,600 GOES BACK TO THE UNIVERSITY 231 00:10:14,600 --> 00:10:16,920 RESEARCH INSTITUTIONS. 232 00:10:16,920 --> 00:10:19,640 I DO NOT NEED TO DEFINE DOWN 233 00:10:19,640 --> 00:10:22,120 SYNDROME FOR THIS AUDIENCE' EACH 234 00:10:22,120 --> 00:10:24,040 YEAR 6,000 BABIES ARE BORN IN 235 00:10:24,040 --> 00:10:25,280 THE UNITED STATES WITH DOWN 236 00:10:25,280 --> 00:10:27,160 SYNDROME AND THEY AND THEIR 237 00:10:27,160 --> 00:10:29,600 FAMILIES FACE SIGNIFICANT HEALTH 238 00:10:29,600 --> 00:10:31,840 CHALLENGES THAT CAN BE OVERCOME 239 00:10:31,840 --> 00:10:33,640 WITH APPROPRIATE SUPPORT AND 240 00:10:33,640 --> 00:10:34,080 TREATMENT. 241 00:10:34,080 --> 00:10:37,960 NIH INVEST IN RESEARCH THAT WILL 242 00:10:37,960 --> 00:10:41,560 ADVANCE OUR UNDERSTANDING OF THE 243 00:10:41,560 --> 00:10:46,560 NATURAL HISTORY OF DOWN SYNDROME 244 00:10:46,560 --> 00:10:48,000 AND TREATMENTS THAT MAY IMPROVE 245 00:10:48,000 --> 00:10:49,440 THE QUALITY OF LIFE FOR THE 246 00:10:49,440 --> 00:10:50,600 PERSON WITH DOWN SYNDROME AND 247 00:10:50,600 --> 00:10:54,760 THEIR FAMILIES. 248 00:10:54,760 --> 00:10:55,880 INVESTMENT IN MEDICAL RESEARCH 249 00:10:55,880 --> 00:10:58,920 HAS LED TO DRAMATIC INCREASE OF 250 00:10:58,920 --> 00:11:00,720 THE LIFE-SPAN OF INDIVIDUALS 251 00:11:00,720 --> 00:11:02,480 LIVING WITH DOWN SYNDROME. 252 00:11:02,480 --> 00:11:05,240 FROM NINE YEARS BACK IN THE 253 00:11:05,240 --> 00:11:08,000 1950s TO PEOPLE NOW LIVING 254 00:11:08,000 --> 00:11:12,040 OVER 50-60 YEARS OF AGE. 255 00:11:12,040 --> 00:11:15,040 THIS INCREASE IN LIFE-SPAN AND 256 00:11:15,040 --> 00:11:18,440 WE FOCUS ON THE GRAPH ON THE 257 00:11:18,440 --> 00:11:20,240 LEFT OF THE SCREEN REALLY 258 00:11:20,240 --> 00:11:21,920 FOLLOWED THE AMERICANA ACADEMY 259 00:11:21,920 --> 00:11:25,680 OF PEDIATRICS RECOMMENDATION OF 260 00:11:25,680 --> 00:11:27,800 CARDIAC SCREENING FOR ALL 261 00:11:27,800 --> 00:11:28,880 INFANTS WITH DOWN SYNDROME IN 262 00:11:28,880 --> 00:11:31,480 THE EARLY 1990s. 263 00:11:31,480 --> 00:11:33,200 TODAY MORE INDIVIDUALS ARE 264 00:11:33,200 --> 00:11:35,080 THRIVING AND LIVING LONGER WHICH 265 00:11:35,080 --> 00:11:36,440 IS GREAT AND THE GRAPH ON THE 266 00:11:36,440 --> 00:11:38,680 RIGHT SHOWS THE AGE 267 00:11:38,680 --> 00:11:39,800 DISTRIBUTIONS SO WE CAN SEE A 268 00:11:39,800 --> 00:11:42,040 LOT OF INDIVIDUALS OVER THE AGE 269 00:11:42,040 --> 00:11:44,200 OF 30 BUT WITH AGING COMES 270 00:11:44,200 --> 00:11:51,120 HEALTH RELATED ISSUES AND DID I 271 00:11:51,120 --> 00:11:54,000 -- DEMINT YA CAN BE A LEADING 272 00:11:54,000 --> 00:11:55,600 CAUSE OF DEATH. 273 00:11:55,600 --> 00:11:57,960 * WHEN WE SEE THE DATA FOR OTHER 274 00:11:57,960 --> 00:12:00,640 RACES THE MEDIAN AGE OF LIFE 275 00:12:00,640 --> 00:12:03,440 EXPECTANCY FOR PEOPLE WITH DOWN 276 00:12:03,440 --> 00:12:05,080 SYNDROME FROM OTHER RACES ARE 277 00:12:05,080 --> 00:12:09,040 MUCH LOWER THAN THEIR WIDE 278 00:12:09,040 --> 00:12:09,680 COUNTERPARTS. 279 00:12:09,680 --> 00:12:11,120 ONE OF THE THINGS THAT WE NEED 280 00:12:11,120 --> 00:12:13,040 TO UNDERSTAND IS WHETHER THERE 281 00:12:13,040 --> 00:12:16,920 ARE HEALTH DISPARITIES FOR THE 282 00:12:16,920 --> 00:12:21,080 CONDITIONS THAT MIGHT EFFECT THE 283 00:12:21,080 --> 00:12:22,840 OVER-ALL HEALTH OF THE PERSON 284 00:12:22,840 --> 00:12:23,600 WITH DOWN SYNDROME. 285 00:12:23,600 --> 00:12:27,160 WE WILL LEARN TODAY AND HEAR 286 00:12:27,160 --> 00:12:32,400 MORE FROM DR. MARISHKA BROWN IN 287 00:12:32,400 --> 00:12:33,320 THE THIRD SESSION. 288 00:12:33,320 --> 00:12:41,320 WE KNOW THAT SLEEP HEALTH IS NOT 289 00:12:41,320 --> 00:12:42,960 EQUITABLY DISTRIBUTED. 290 00:12:42,960 --> 00:12:46,040 ADVERSE SLEEP HEALTH IS HEALTH 291 00:12:46,040 --> 00:12:48,280 IS ASSOCIATED WITH POOR HEALTH 292 00:12:48,280 --> 00:12:50,360 OUTCOMES AND PREMATURE 293 00:12:50,360 --> 00:12:51,080 MORTALITY. 294 00:12:51,080 --> 00:12:53,760 SLEEP RESEARCH HAS SHOWN THAT 295 00:12:53,760 --> 00:12:56,120 PEOPLE FROM RACIAL AND ETHNIC 296 00:12:56,120 --> 00:12:59,000 MINORITIES REPORT SHORTER SLEEP 297 00:12:59,000 --> 00:13:01,760 DURATION WHICH INFLUENCES MANY 298 00:13:01,760 --> 00:13:03,000 DOMAINS INCLUDING OVER-ALL 299 00:13:03,000 --> 00:13:04,680 HEALTH OF THE PERSON. 300 00:13:04,680 --> 00:13:10,440 I WILL SWITCH GEARS AND DISCUSS 301 00:13:10,440 --> 00:13:12,880 INCLUDE IT STANDS FOR 302 00:13:12,880 --> 00:13:16,080 INVESTIGATION OF CO-AUTHORING 303 00:13:16,080 --> 00:13:19,120 CONDITIONS ACROSS THE LIFE-SPAN. 304 00:13:19,120 --> 00:13:21,320 SO AS DR. AKLIN MENTIONED THIS 305 00:13:21,320 --> 00:13:23,360 WAS LAUNCHED IN 2018 AND ONE OF 306 00:13:23,360 --> 00:13:26,160 THE THINGS THAT CONGRESS HAS 307 00:13:26,160 --> 00:13:30,160 GIVEN US DIRECTIVES FOR IS TO 308 00:13:30,160 --> 00:13:31,680 ENGAGE WITH THOSE WITH DOWN 309 00:13:31,680 --> 00:13:34,600 SYNDROME AND THEIR FAMILIES OF 310 00:13:34,600 --> 00:13:36,400 DIVERSE BACKGROUNDS AND INCREASE 311 00:13:36,400 --> 00:13:38,920 THE NUMBER OF INVESTIGATORS AND 312 00:13:38,920 --> 00:13:41,040 TRAINEES STUDYING DOWN SYNDROME. 313 00:13:41,040 --> 00:13:44,680 JUST TO SET THE MEETING NIH 314 00:13:44,680 --> 00:13:52,480 DEFINES HEALTH DESPA DISPARITY 315 00:13:52,480 --> 00:13:55,440 DEFINITION -- UNDERSERVED RURAL 316 00:13:55,440 --> 00:13:57,360 COMMUNITIES AND SEXUAL AND 317 00:13:57,360 --> 00:14:01,240 GENDER MINORITIES. 318 00:14:01,240 --> 00:14:04,200 THE INCLUDE PROJECT HAS BEEN 319 00:14:04,200 --> 00:14:04,880 DIVIDED INTO THREE. 320 00:14:04,880 --> 00:14:07,640 AND BUILDING A DIVERSE DOWN 321 00:14:07,640 --> 00:14:09,240 SYNDROME RESEARCH COMMUNITY 322 00:14:09,240 --> 00:14:11,280 ADDRESSES ALL THREE. 323 00:14:11,280 --> 00:14:13,840 BUILD DIVERSE RESEARCH TEAMS, 324 00:14:13,840 --> 00:14:17,480 RESEARCHERS STUDYING BASIC 325 00:14:17,480 --> 00:14:18,920 SCIENCE. 326 00:14:18,920 --> 00:14:26,480 ASSEMBLING A DIVERSE A INCLUSIVE 327 00:14:26,480 --> 00:14:28,000 TRIALS. 328 00:14:28,000 --> 00:14:31,160 AS DR. AKLIN MENTIONED THAT NIH 329 00:14:31,160 --> 00:14:34,000 HAS SPENT OVER $100 MILLION 330 00:14:34,000 --> 00:14:36,120 WHICH HAS ALLOWED US TO FUND 331 00:14:36,120 --> 00:14:40,000 SOME NEW PROJECTS FROM NEW EARLY 332 00:14:40,000 --> 00:14:47,240 AND ESTABLISHED INVESTIGATORS. 333 00:14:47,240 --> 00:14:49,200 IT IS IMPRESSIVE INCLUDING 334 00:14:49,200 --> 00:14:50,200 SEVERAL CLINICAL TRIALS. 335 00:14:50,200 --> 00:14:51,800 THIS IS THE GOOD NEWS. 336 00:14:51,800 --> 00:14:54,120 THE NOT SO GOOD NEWS IS LOOKING 337 00:14:54,120 --> 00:14:56,080 AT THE PRELIMINARY DEMOGRAPHIC 338 00:14:56,080 --> 00:14:58,360 DATA SHOWN HERE FOR THREE 339 00:14:58,360 --> 00:14:59,320 CLINICAL TRIALS. 340 00:14:59,320 --> 00:15:01,920 WE HAVE LOTS TO ACHIEVE AND 341 00:15:01,920 --> 00:15:03,760 INCLUDING DIVERSE PARTICIPATION. 342 00:15:03,760 --> 00:15:07,960 THE STATUS QUO NEEDS TO CHANGE. 343 00:15:07,960 --> 00:15:12,760 THE CALL TO ACTION FOR YOU IS TO 344 00:15:12,760 --> 00:15:18,280 TAKE PART IN DS CONNECT. 345 00:15:18,280 --> 00:15:20,240 DIRECTLY FROM FAMILIES. 346 00:15:20,240 --> 00:15:22,800 IT IS ALSO AVAILABLE IN SPANISH 347 00:15:22,800 --> 00:15:24,640 AND HELPS FAMILY CONNECT WITH 348 00:15:24,640 --> 00:15:26,600 APPROVED RESEARCHERS AND TAKE 349 00:15:26,600 --> 00:15:29,080 PART IN STUDIES. 350 00:15:29,080 --> 00:15:31,200 THE MAP SHOWS THAT WE HAVE 351 00:15:31,200 --> 00:15:33,960 PARTICIPANTS FROM ALL OVER THE 352 00:15:33,960 --> 00:15:35,720 U.S. ALTHOUGH OUTREACH IS STILL 353 00:15:35,720 --> 00:15:37,600 NEEDED IN RURAL COMMUNITIES. 354 00:15:37,600 --> 00:15:39,720 WE HAVE SEVERAL HUNDRED 355 00:15:39,720 --> 00:15:42,200 PARTICIPANTS FROM OUTSIDE THE 356 00:15:42,200 --> 00:15:42,640 U.S. 357 00:15:42,640 --> 00:15:45,200 OUR GOAL IS TO CONNECT BROADLY 358 00:15:45,200 --> 00:15:47,400 TO MAKE THIS RESOURCE HELPFUL 359 00:15:47,400 --> 00:15:49,120 FOR FAMILIES AND PARTNER WITH 360 00:15:49,120 --> 00:15:50,760 LOCAL AND NATIONAL CHAPTERS TO 361 00:15:50,760 --> 00:15:52,240 LISTEN AND LEARN FROM 362 00:15:52,240 --> 00:15:55,400 UNDERSERVED GROUPS. 363 00:15:55,400 --> 00:15:58,720 WE ARE ABLE TO HELP INCLUDE 364 00:15:58,720 --> 00:16:00,400 FUNDED RESEARCH RECRUIT FOR THE 365 00:16:00,400 --> 00:16:03,440 STUDIES USING DS CONNECT. 366 00:16:03,440 --> 00:16:08,160 THE REGISTRY HELPS IN RECRUITING 367 00:16:08,160 --> 00:16:09,360 STUDIES THAT WE ARE FUNDING. 368 00:16:09,360 --> 00:16:11,440 THAT IS THE GOOD NEWS THAT WE 369 00:16:11,440 --> 00:16:14,440 CAN LEVERAGE TO NIH PROGRAMS. 370 00:16:14,440 --> 00:16:18,640 THE NOT SO GOOD NEWS, THE 371 00:16:18,640 --> 00:16:19,400 DEMOGRAPHIC DATA. 372 00:16:19,400 --> 00:16:22,080 IT IS IMPORTANT THAT WE INCREASE 373 00:16:22,080 --> 00:16:23,640 DIVERSE PARTICIPATION SINCE 374 00:16:23,640 --> 00:16:25,440 RESEARCHERS ARE USING THIS TO 375 00:16:25,440 --> 00:16:28,640 RECRUIT FOR THEIR STUDIES. 376 00:16:28,640 --> 00:16:31,400 IT IS IMPORTANT TO INCLUDE A 377 00:16:31,400 --> 00:16:32,720 LARGE SAMPLE POPULATION AND THIS 378 00:16:32,720 --> 00:16:36,400 IS A SLIDE FROM THE INCLUDE DATA 379 00:16:36,400 --> 00:16:37,640 COORDINATING CENTER WHICH SHOWS 380 00:16:37,640 --> 00:16:40,960 NOT INCLUDING THE LARGER 381 00:16:40,960 --> 00:16:43,400 POPULATION MAY LEAD TO THE MYTH 382 00:16:43,400 --> 00:16:46,720 THAT THERE ARE NO FIGURES IN THE 383 00:16:46,720 --> 00:16:47,160 POPULATION. 384 00:16:47,160 --> 00:16:49,360 OUR GOAL IS TO UNDERSTAND THE 385 00:16:49,360 --> 00:16:52,600 NATURAL HISTORY OF DOWN SYNDROME 386 00:16:52,600 --> 00:16:54,680 AND HOW CONDITIONS MIGHT AFFECT 387 00:16:54,680 --> 00:16:56,800 THE HEALTH AND LIFE-SPAN OF 388 00:16:56,800 --> 00:16:58,480 INDIVIDUALS BY BEING INCLUSIVE 389 00:16:58,480 --> 00:17:00,480 WE WILL BE ABLE TO UNDERSTAND 390 00:17:00,480 --> 00:17:02,480 MORE ABOUT DOWN SYNDROME FOR ALL 391 00:17:02,480 --> 00:17:03,840 UNDER REPRESENTED GROUPS. 392 00:17:03,840 --> 00:17:06,120 I WOULD LIKE TO END MY 393 00:17:06,120 --> 00:17:09,240 PRESENTATION BY SHARING -- THE 394 00:17:09,240 --> 00:17:14,400 DIVERSITY, EQUITY, INCLUSION AND 395 00:17:14,400 --> 00:17:16,600 ACCESS. 396 00:17:16,600 --> 00:17:19,480 OUR GOAL -- WHERE PROPS ARE 397 00:17:19,480 --> 00:17:21,040 TAKEN OFF AND BARRIERS ARE 398 00:17:21,040 --> 00:17:22,600 KNOCKED DOWN AND EVERYONE IS 399 00:17:22,600 --> 00:17:26,760 INCLUDED IN THE GAME. 400 00:17:26,760 --> 00:17:33,120 WE AT NIH LOVE OUR ACRONYMS AND 401 00:17:33,120 --> 00:17:35,960 UNITE IS ANOTHER ONE. 402 00:17:35,960 --> 00:17:38,640 TOMORROW YOU WILL HEAR FROM 403 00:17:38,640 --> 00:17:41,840 DR. CHRISTIE LAY ABOUT THE 404 00:17:41,840 --> 00:17:43,800 ACTIVITIES FROM THE OFFICE WHICH 405 00:17:43,800 --> 00:17:45,960 IS THE CHIEF OFFICER OF 406 00:17:45,960 --> 00:17:48,160 SCIENTIFIC WORK ON DIVERSITY AND 407 00:17:48,160 --> 00:17:52,680 HOW THEY ARE ADDRESSING THE E IN 408 00:17:52,680 --> 00:17:57,000 UNITE INITIATIVE. 409 00:17:57,000 --> 00:17:59,000 IF THERE IS ONE TAKE AWAY FROM 410 00:17:59,000 --> 00:18:00,440 MY PRESENTATION IT IS TO GET 411 00:18:00,440 --> 00:18:04,200 MORE PEOPLE AWARE OF THE ON-LINE 412 00:18:04,200 --> 00:18:06,280 REGISTRY DS CONNECT SO WE CAN 413 00:18:06,280 --> 00:18:09,240 REACH OUR GOAL OF 10,000 414 00:18:09,240 --> 00:18:11,680 PARTICIPANTS AND IMPROVE THE 415 00:18:11,680 --> 00:18:13,200 DEMOGRAPHIC PIE CHART ALONG THE 416 00:18:13,200 --> 00:18:13,640 WAY. 417 00:18:13,640 --> 00:18:15,400 NOW I WOULD LIKE TO INTRODUCE 418 00:18:15,400 --> 00:18:17,840 THE NEXT SPEAKER MS. LINDA 419 00:18:17,840 --> 00:18:20,840 GARCIA WHO IS THE COMMUNICATIONS 420 00:18:20,840 --> 00:18:23,480 AND OUTREACH COORDINATOR FOR THE 421 00:18:23,480 --> 00:18:26,360 INCLUDE PROJECT AND THE DS 422 00:18:26,360 --> 00:18:28,840 CONNECT REGISTRY AT NIH. 423 00:18:28,840 --> 00:18:30,400 SHE IS AN ACCOMPLISHED 424 00:18:30,400 --> 00:18:31,880 COMMUNICATION PROFESSIONAL WITH 425 00:18:31,880 --> 00:18:33,600 OVER 20 YEARS OF EXPERIENCE IN 426 00:18:33,600 --> 00:18:34,680 MARKETING. 427 00:18:34,680 --> 00:18:36,560 BUT HER TRUE PASSION LIES IN 428 00:18:36,560 --> 00:18:38,160 WORKING WITH MINORITY 429 00:18:38,160 --> 00:18:41,000 POPULATION. 430 00:18:41,000 --> 00:18:43,520 SHE ALSO IS THE CO-LEAD FOR THIS 431 00:18:43,520 --> 00:18:45,000 WORKSHOP AND I'M FORTUNATE TO 432 00:18:45,000 --> 00:18:47,880 HAVE HER ON OUR TEAM. 433 00:18:47,880 --> 00:18:49,280 >> GOOD AFTERNOON AND WELCOME 434 00:18:49,280 --> 00:18:51,640 EVERYONE. 435 00:18:51,640 --> 00:18:53,240 LET ME WAIT FOR MY SLIDES TO BE 436 00:18:53,240 --> 00:18:54,960 ON. 437 00:18:54,960 --> 00:18:56,600 I WILL PRESENT TO YOU THE 438 00:18:56,600 --> 00:18:58,360 SUMMARY OF THE LISTENING SESSION 439 00:18:58,360 --> 00:19:03,080 FOR FAMILIES THAT WAS HELD ON 440 00:19:03,080 --> 00:19:03,480 MAY 18, 2022. 441 00:19:03,480 --> 00:19:05,040 THE INCLUDE TEAM ORGANIZED A 442 00:19:05,040 --> 00:19:06,280 LISTENING SESSION WITH PARENTS 443 00:19:06,280 --> 00:19:08,040 WHO HAVE A SON OR DAUGHTER WITH 444 00:19:08,040 --> 00:19:11,080 DOWN SYNDROME AND THE PARENTS 445 00:19:11,080 --> 00:19:14,440 WHO PARTICIPATED REPRESENTED 446 00:19:14,440 --> 00:19:16,440 DIVERSE BACKGROUNDS. 447 00:19:16,440 --> 00:19:17,800 WE PRESENTED SEVERAL QUESTIONS 448 00:19:17,800 --> 00:19:19,880 TO THEM FOR OPEN DISCUSSION. 449 00:19:19,880 --> 00:19:21,440 WE WERE INTERESTED IN LEARNING 450 00:19:21,440 --> 00:19:23,640 ABOUT THEIR POSITIVE EXPERIENCES 451 00:19:23,640 --> 00:19:25,320 AS WELL AS SOME OF THE BARRIERS 452 00:19:25,320 --> 00:19:27,960 THEY'VE ENCOUNTERED IN THEIR 453 00:19:27,960 --> 00:19:29,320 PARTICIPATION IN DOWN SYNDROME 454 00:19:29,320 --> 00:19:34,200 RESEARCH. 455 00:19:34,200 --> 00:19:35,960 AND WHAT IS OUR MISSION? 456 00:19:35,960 --> 00:19:37,800 OUR MISSION IS TO ENGAGE AND 457 00:19:37,800 --> 00:19:40,920 LISTEN TO THE DOWN SYNDROME 458 00:19:40,920 --> 00:19:42,200 COMMUNITY, INVOLVE MORE PEOPLE 459 00:19:42,200 --> 00:19:43,480 WITH DOWN SYNDROME AND THEIR 460 00:19:43,480 --> 00:19:44,960 FAMILIES ESPECIALLY THOSE FROM 461 00:19:44,960 --> 00:19:45,960 DIFFERENT BACKGROUNDS IN 462 00:19:45,960 --> 00:19:49,400 RESEARCH AND THIRD, TO 463 00:19:49,400 --> 00:19:50,880 UNDERSTAND THE NEEDS OF THE 464 00:19:50,880 --> 00:19:52,520 COMMUNITY IN ORDER TO ENGAGED 465 00:19:52,520 --> 00:19:54,440 THEM IN DOWN SYNDROME RESEARCH 466 00:19:54,440 --> 00:20:02,080 THAT BENEFITS THEM. 467 00:20:02,080 --> 00:20:04,040 -- -- ONE OF THE MOST IMPORTANT 468 00:20:04,040 --> 00:20:06,080 ONES THAT FAMILIES HAVE 469 00:20:06,080 --> 00:20:07,200 EXPRESSED IS SPEAK THE LANGUAGE 470 00:20:07,200 --> 00:20:08,680 OF THE PARTICIPANT. 471 00:20:08,680 --> 00:20:12,000 SO THEY FEEL AT EASE WHEN THEY 472 00:20:12,000 --> 00:20:13,720 PARTICIPATE IN RESEARCH. 473 00:20:13,720 --> 00:20:15,520 EDUCATE THE COMMUNITY ON THE 474 00:20:15,520 --> 00:20:17,440 IMPORTANCE OF PARTICIPATING IN 475 00:20:17,440 --> 00:20:19,520 RESEARCH. 476 00:20:19,520 --> 00:20:21,320 BUILD TRUST. 477 00:20:21,320 --> 00:20:23,560 MAKE SAFETY PARAMOUNT AND 478 00:20:23,560 --> 00:20:26,880 PROVIDE COMPENSATION AND SHARE 479 00:20:26,880 --> 00:20:27,880 RESEARCH PROGRESS IN ORDER TO 480 00:20:27,880 --> 00:20:32,280 DEVELOP TRUST. 481 00:20:32,280 --> 00:20:36,920 WE CAN FACILITATE DIVERSE 482 00:20:36,920 --> 00:20:38,400 PARTICIPATION BY PROVIDING 483 00:20:38,400 --> 00:20:40,240 EDUCATIONAL RESOURCES. 484 00:20:40,240 --> 00:20:42,560 WE CAN ENSURE THE UNDERSTANDING 485 00:20:42,560 --> 00:20:44,440 OF THE PROCESS WITH CLEAR 486 00:20:44,440 --> 00:20:45,120 COMMUNICATION. 487 00:20:45,120 --> 00:20:46,360 BUILDING THE RELATIONSHIPS 488 00:20:46,360 --> 00:20:47,600 WITHIN THE COMMUNITY. 489 00:20:47,600 --> 00:20:49,800 SUCH AS PARTICIPATING IN LOCAL 490 00:20:49,800 --> 00:20:51,640 DOWN SYNDROME PARENT 491 00:20:51,640 --> 00:20:52,520 ORGANIZATIONS OR OTHER 492 00:20:52,520 --> 00:20:54,000 ORGANIZATIONS THAT THE PARENTS 493 00:20:54,000 --> 00:20:55,240 MIGHT TRUST. 494 00:20:55,240 --> 00:20:57,000 MAKE RESEARCH ACCESSIBLE TO 495 00:20:57,000 --> 00:20:57,960 FAMILIES. 496 00:20:57,960 --> 00:21:01,480 ONE FAMILY OR ONE PARENT 497 00:21:01,480 --> 00:21:05,440 SUGGESTED ORGANIZING EVENTS IN 498 00:21:05,440 --> 00:21:07,000 DIFFERENT MARGINALIZED 499 00:21:07,000 --> 00:21:11,400 COMMUNITIES AND OFFER SOME KIND 500 00:21:11,400 --> 00:21:13,160 OF COMPENSATION. 501 00:21:13,160 --> 00:21:15,520 THE FAMILIES ARE ALREADY 502 00:21:15,520 --> 00:21:16,800 RECEIVING THEIR NEWSLETTERS. 503 00:21:16,800 --> 00:21:19,680 THEY ARE FOLLOWING THE SOCIAL 504 00:21:19,680 --> 00:21:21,440 MEDIA SO WHY NOT WORK CLOSELY 505 00:21:21,440 --> 00:21:23,120 WITH THEM AND THEN YOU MIGHT BE 506 00:21:23,120 --> 00:21:24,160 ABLE TO REACH SOME OF THE 507 00:21:24,160 --> 00:21:26,000 FAMILIES. 508 00:21:26,000 --> 00:21:27,640 PROMOTE CULTURAL COME PEN SEE 509 00:21:27,640 --> 00:21:30,120 TRAINING TO THE TEAM. 510 00:21:30,120 --> 00:21:30,880 *. 511 00:21:30,880 --> 00:21:31,560 SO IMPORTANT. 512 00:21:31,560 --> 00:21:37,400 THAT IS ANOTHER GOOD SUGGESTION. 513 00:21:37,400 --> 00:21:39,160 WE ALSO PRESENTED TO THE 514 00:21:39,160 --> 00:21:42,040 FAMILIES AN OPPORTUNITY TO 515 00:21:42,040 --> 00:21:43,800 PROVIDE TWO WORDS THAT THEY 516 00:21:43,800 --> 00:21:44,960 COULD DESCRIBE AS SOME OF THE 517 00:21:44,960 --> 00:21:47,840 BARRIERS THAT THEY FEEL WHEN 518 00:21:47,840 --> 00:21:49,080 PARTICIPATING IN DOWN SYNDROME 519 00:21:49,080 --> 00:21:50,760 RESEARCH AND THIS ILLUSTRATION 520 00:21:50,760 --> 00:21:53,600 IS WHAT RESULTED FROM THE WORK 521 00:21:53,600 --> 00:21:55,320 CLOUD THAT WAS GENERATED AS A 522 00:21:55,320 --> 00:21:56,160 RESULT. 523 00:21:56,160 --> 00:21:58,400 AS YOU CAN SEE THE MOST 524 00:21:58,400 --> 00:22:00,240 PROMINENT ONE WAS TIME. 525 00:22:00,240 --> 00:22:03,120 PARENTS EXPRESSED A CONCERN THAT 526 00:22:03,120 --> 00:22:04,680 THEY DON'T HAVE TIME TO 527 00:22:04,680 --> 00:22:06,280 PARTICIPATE IN RESEARCH P. MAYBE 528 00:22:06,280 --> 00:22:10,080 THERE HAS TO BE ANOTHER * 529 00:22:10,080 --> 00:22:12,240 STRATEGY OR A WAY TO HELP THOSE 530 00:22:12,240 --> 00:22:17,040 FAMILIES BY CREATING ANOTHER 531 00:22:17,040 --> 00:22:18,560 ALTERNATIVE. 532 00:22:18,560 --> 00:22:20,880 LANGUAGE IS ANOTHER BARRIER. 533 00:22:20,880 --> 00:22:21,320 TRUST. 534 00:22:21,320 --> 00:22:23,040 EDUCATION. 535 00:22:23,040 --> 00:22:24,320 LOCATION. 536 00:22:24,320 --> 00:22:27,760 FEAR. 537 00:22:27,760 --> 00:22:29,200 TRANSPORTATION IS ANOTHER COMMON 538 00:22:29,200 --> 00:22:32,960 ONE. 539 00:22:32,960 --> 00:22:35,240 HOW CAN WE RESOLVE THESE AND 540 00:22:35,240 --> 00:22:36,040 BUILD TRUST? 541 00:22:36,040 --> 00:22:38,760 WE CAN ENGAGE AND BUILD 542 00:22:38,760 --> 00:22:40,240 RELATIONSHIPS WITH COMMUNITY AND 543 00:22:40,240 --> 00:22:42,760 PARTNER ORGANIZATIONS. 544 00:22:42,760 --> 00:22:44,600 USE SOCIAL MEDIA EFFECTIVELY. 545 00:22:44,600 --> 00:22:46,160 THAT IS ONE OF THE THINGS THAT 546 00:22:46,160 --> 00:22:48,800 ONE OF THE PARENTS MENTIONED. 547 00:22:48,800 --> 00:22:51,000 THEY WILL FEEL COMFORTABLE 548 00:22:51,000 --> 00:22:52,360 RECEIVING INFORMATION VIA SOCIAL 549 00:22:52,360 --> 00:22:53,160 MEDIA. 550 00:22:53,160 --> 00:22:55,960 AND ALSO TO WORK CLOSELY WITH 551 00:22:55,960 --> 00:22:57,200 NATIONAL DOWN SYNDROME 552 00:22:57,200 --> 00:22:58,960 ORGANIZATIONS TO DISSEMINATE 553 00:22:58,960 --> 00:22:59,400 INFORMATION. 554 00:22:59,400 --> 00:23:00,840 LISTEN TO THE FAMILIES AND 555 00:23:00,840 --> 00:23:03,280 PROVIDE EDUCATION IN PLAIN 556 00:23:03,280 --> 00:23:04,960 LANGUAGE EXPLANATION IN ORDER 557 00:23:04,960 --> 00:23:10,040 FOR FAMILIES TO UNDERSTAND. 558 00:23:10,040 --> 00:23:11,760 HOW CAN THE NIH HELP? 559 00:23:11,760 --> 00:23:13,680 WE CAN ENSURE THAT RESEARCH IS 560 00:23:13,680 --> 00:23:16,120 RELEVANT. 561 00:23:16,120 --> 00:23:18,680 HOW CAN THE NIH HELP? 562 00:23:18,680 --> 00:23:22,320 WE CAN ENSURE THAT THE RESEARCH 563 00:23:22,320 --> 00:23:24,840 IS RELEVANT AND THE FAMILIES TO 564 00:23:24,840 --> 00:23:26,520 UNDERSTAND HOW IT WILL HELP 565 00:23:26,520 --> 00:23:31,320 THEIR LOVED ONES. 566 00:23:31,320 --> 00:23:33,360 AND CONDUCT OUTREACH TO FAMILIES 567 00:23:33,360 --> 00:23:34,680 AND PROVIDE INFORMATION IN THEIR 568 00:23:34,680 --> 00:23:35,160 LANGUAGE. 569 00:23:35,160 --> 00:23:37,120 WE RECENTLY LIKE THIS PAST 570 00:23:37,120 --> 00:23:41,440 WEEKEND WE ATTENDED THE NATIONAL 571 00:23:41,440 --> 00:23:43,840 SOCIETY BODY WALK IN NEW YORK. 572 00:23:43,840 --> 00:23:46,960 WE PARTICIPATED IN THE EVENT 573 00:23:46,960 --> 00:23:50,360 WITH THE MOMS AND ALSO WE 574 00:23:50,360 --> 00:23:52,600 PARTICIPATED AT THE NATIONAL 575 00:23:52,600 --> 00:23:55,480 DOWN SYNDROME CONVENTION IN NEW 576 00:23:55,480 --> 00:23:56,840 ORLEANS. 577 00:23:56,840 --> 00:23:58,080 WE'RE PROVIDING INFORMATION TO 578 00:23:58,080 --> 00:23:59,680 FAMILIES AND CONNECTING WITH 579 00:23:59,680 --> 00:24:02,840 THEM TO HELP THEM UNDERSTAND AND 580 00:24:02,840 --> 00:24:04,400 ANSWER ANY QUESTIONS THAT THEY 581 00:24:04,400 --> 00:24:05,080 MAY HAVE. 582 00:24:05,080 --> 00:24:07,520 THIS CONCLUDES MY PRESENTATION. 583 00:24:07,520 --> 00:24:09,760 AND I WOULD LIKE TO INVITE YOU 584 00:24:09,760 --> 00:24:12,400 TO VISIT THE INCLUDE WEBSITE AND 585 00:24:12,400 --> 00:24:13,880 LEARN MORE ABOUT THE INCLUDE 586 00:24:13,880 --> 00:24:16,240 PROJECTS AS WELL AS DOWNLOAD THE 587 00:24:16,240 --> 00:24:17,800 EXECUTIVE SUMMARIES THAT WE WILL 588 00:24:17,800 --> 00:24:19,600 HAVE AVAILABLE IN THE NEXT FEW 589 00:24:19,600 --> 00:24:20,080 WEEKS. 590 00:24:20,080 --> 00:24:21,920 MY E-MAIL IS HERE ON THE SCREEN 591 00:24:21,920 --> 00:24:24,360 AND YOU'RE WELCOMED TO CONTACT 592 00:24:24,360 --> 00:24:26,360 ME ANY TIME AND I WILL BE HAPPY 593 00:24:26,360 --> 00:24:28,600 TO HEAR FROM YOU AND LEARN MORE 594 00:24:28,600 --> 00:24:30,440 FROM WHAT YOU'RE HEARING. 595 00:24:30,440 --> 00:24:33,240 I WOULD LIKE TO INTRODUCE 596 00:24:33,240 --> 00:24:34,640 DR. ARUNA NATARAJAN. 597 00:24:34,640 --> 00:24:37,600 A PROGRAM DIRECTOR AT THE 598 00:24:37,600 --> 00:24:43,160 PEDIATRIC AND NEONATAL DISEASE 599 00:24:43,160 --> 00:24:48,560 AND CRITICAL CARE AT THE 600 00:24:48,560 --> 00:24:53,080 NATIONAL HEART LUNG INTENSIVE 601 00:24:53,080 --> 00:24:59,640 CARE. 602 00:24:59,640 --> 00:25:01,200 DR. NATARAJAN HAS WORKED FOR 603 00:25:01,200 --> 00:25:03,520 OVER 35 YEARS AS A CLINICIAN AND 604 00:25:03,520 --> 00:25:05,960 HAS TAKEN CARE OF MANY CHILDREN 605 00:25:05,960 --> 00:25:08,560 WITH DOWN SYNDROME. 606 00:25:08,560 --> 00:25:15,280 DR. NATARAJAN, YOU'RE NEXT. 607 00:25:15,280 --> 00:25:18,480 >> CAN YOU SEE ME OR HEAR ME? 608 00:25:18,480 --> 00:25:18,880 >> YES. 609 00:25:18,880 --> 00:25:19,720 WE CAN. 610 00:25:19,720 --> 00:25:21,640 >> THANK YOU. 611 00:25:21,640 --> 00:25:23,640 GOOD AFTERNOON, EVERYBODY. 612 00:25:23,640 --> 00:25:27,320 TODAY I WILL BE SHARING WITH YOU 613 00:25:27,320 --> 00:25:29,240 THE PRECEDINGS OF THE LISTENING 614 00:25:29,240 --> 00:25:30,880 SESSION FOR RESEARCHERS IN DOWN 615 00:25:30,880 --> 00:25:31,320 SYNDROME. 616 00:25:31,320 --> 00:25:34,920 AND WHAT THE NIH STAFF DID IS WE 617 00:25:34,920 --> 00:25:36,680 LISTENED AND WE LEARNED A LOT 618 00:25:36,680 --> 00:25:43,160 AND I WILL SHARE THAT WITH YOU. 619 00:25:43,160 --> 00:25:45,840 OUR MISSION AS SUJATA AND LINDA 620 00:25:45,840 --> 00:25:47,800 HAVE ELOQUENTLY TOLD YOU IS TO 621 00:25:47,800 --> 00:25:49,600 ENHANCE PARTICIPATION OF 622 00:25:49,600 --> 00:25:52,640 MINORITY POPULATIONS IN 623 00:25:52,640 --> 00:25:54,160 REGISTRIES, IN RESEARCH 624 00:25:54,160 --> 00:25:56,880 PROTOCOLS AND IN RESEARCH TEAMS. 625 00:25:56,880 --> 00:26:03,280 SO I'LL -- OUR GOAL IS TO ENGAGE 626 00:26:03,280 --> 00:26:04,400 COMMUNITIES AND THE REASON WAS 627 00:26:04,400 --> 00:26:06,320 TO LISTEN AND TO LEARN NOT ONLY 628 00:26:06,320 --> 00:26:09,080 ABOUT THE POSITIVE EFFECTS OR 629 00:26:09,080 --> 00:26:11,560 THE POSITIVE EXPERIENCES THAT 630 00:26:11,560 --> 00:26:13,120 RESEARCHERS HAVE IN THIS KIND OF 631 00:26:13,120 --> 00:26:14,880 RESEARCH BUT ALSO TO IDENTIFY 632 00:26:14,880 --> 00:26:16,480 BARRIERS AND CHALLENGES THAT 633 00:26:16,480 --> 00:26:17,920 THEY HAD PERCEIVED. 634 00:26:17,920 --> 00:26:20,240 SO THAT WE COULD THEN DEVELOP 635 00:26:20,240 --> 00:26:22,680 ACTIONS AND INITIATIVES TO 636 00:26:22,680 --> 00:26:25,440 INCREASE DIVERSE PARTICIPATION. 637 00:26:25,440 --> 00:26:27,040 SPEAKING A LITTLE SLOWLY TO GIVE 638 00:26:27,040 --> 00:26:31,200 THE SPANISH INTERPRETERS TIME TO 639 00:26:31,200 --> 00:26:34,680 INTERPRET. 640 00:26:34,680 --> 00:26:37,800 SO THE FIRST QUESTION WE ASKED 641 00:26:37,800 --> 00:26:40,320 OUR RESEARCH COMMUNITY WAS WHAT 642 00:26:40,320 --> 00:26:42,840 STRATEGIES HAVE IMPROVED DIVERSE 643 00:26:42,840 --> 00:26:44,960 PARTICIPATION IN THEIR 644 00:26:44,960 --> 00:26:47,120 EXPERIENCE AND IT BOILED DOWN TO 645 00:26:47,120 --> 00:26:48,880 TRUST, TRUST AND TRUST. 646 00:26:48,880 --> 00:26:51,720 FOLKS FELT THAT IF THEY ENGAGED 647 00:26:51,720 --> 00:26:53,600 AND PARTICIPATED IN COMMUNITIES 648 00:26:53,600 --> 00:26:57,400 IN ALL CONTEXT, HEALTH AND 649 00:26:57,400 --> 00:26:59,240 EDUCATION AS EXAMPLES NOT 650 00:26:59,240 --> 00:27:00,600 NECESSARILY ONLY IN RESEARCH IT 651 00:27:00,600 --> 00:27:04,120 HELPED. 652 00:27:04,120 --> 00:27:07,080 THEY FELT BY LISTENING TO AND 653 00:27:07,080 --> 00:27:08,760 ENGAGING THE COMMUNITY IN 654 00:27:08,760 --> 00:27:11,120 RESEARCH DESIGN HELPED TO BUILD 655 00:27:11,120 --> 00:27:11,520 TRUST. 656 00:27:11,520 --> 00:27:13,520 IN OTHER WORDS THEY WOULD SHARE 657 00:27:13,520 --> 00:27:14,480 THEIR IDEAS WITH THE COMMUNITY 658 00:27:14,480 --> 00:27:16,560 AND THE THE COMMUNITY WOULD HELP 659 00:27:16,560 --> 00:27:19,960 THEM DESIGN THEIR STUDY. 660 00:27:19,960 --> 00:27:21,640 INVESTIGATORS FELT THAT BUILDING 661 00:27:21,640 --> 00:27:25,720 A CULTURE WHERE WE EMPHASIZED 662 00:27:25,720 --> 00:27:27,080 MUTUAL BENEFIT BOTH TO THE 663 00:27:27,080 --> 00:27:29,200 RESEARCHER AND THE PARTICIPANT 664 00:27:29,200 --> 00:27:32,840 WOULD SORT OF CONVEY -- THAT 665 00:27:32,840 --> 00:27:35,520 WOULD HELP. 666 00:27:35,520 --> 00:27:38,400 THE FACT OF PHYSICAL FEATURES IN 667 00:27:38,400 --> 00:27:41,640 THE RESEARCH DESIGN HELPED SOME 668 00:27:41,640 --> 00:27:42,240 INVESTIGATORS, FOR EXAMPLE 669 00:27:42,240 --> 00:27:45,720 HAVING EEGs WHICH ARE LEADS OR 670 00:27:45,720 --> 00:27:46,760 ELECTRICAL WIRES THAT YOU PUT ON 671 00:27:46,760 --> 00:27:48,960 THE SCALP OF THE CHILD. 672 00:27:48,960 --> 00:27:53,240 AND IF YOU USED SOMETHING THAT 673 00:27:53,240 --> 00:27:55,720 HAD WAS DESIGNED FOR DIFFERENT 674 00:27:55,720 --> 00:27:58,080 TYPES OF HAIR THAT HELPED BUILD 675 00:27:58,080 --> 00:27:58,520 TRUST. 676 00:27:58,520 --> 00:28:00,720 TO SPEAK THE LANGUAGE OF THE 677 00:28:00,720 --> 00:28:02,320 PARTICIPANT AS YOU'VE HEARD 678 00:28:02,320 --> 00:28:03,440 BEFORE. 679 00:28:03,440 --> 00:28:03,800 CONVENIENCE. 680 00:28:03,800 --> 00:28:08,240 TO TRY TO MEET THEM WHERE THEY 681 00:28:08,240 --> 00:28:08,680 ARE LOCATED. 682 00:28:08,680 --> 00:28:12,000 TO MAKE THE CONSENT PROCESS, 683 00:28:12,000 --> 00:28:13,440 TRANSPORTATION TO CLINICAL 684 00:28:13,440 --> 00:28:15,640 TRIALS AND LOGISTICS EASIER. 685 00:28:15,640 --> 00:28:17,800 ALL OF THESE HELPED. 686 00:28:17,800 --> 00:28:19,480 HAVING STUDENTS FROM MAJORITY 687 00:28:19,480 --> 00:28:21,040 COMMUNITIES LEADING RESEARCH 688 00:28:21,040 --> 00:28:23,560 PROJECTS WAS FOUND TO BE 689 00:28:23,560 --> 00:28:26,880 BENEFICIAL AS ALSO TRYING VERY 690 00:28:26,880 --> 00:28:29,560 HARD TO SEAMLESSLY MELD BOTH THE 691 00:28:29,560 --> 00:28:31,360 RESEARCH ACTIVITIES AND THE 692 00:28:31,360 --> 00:28:39,120 CLINICAL SUPPORT. 693 00:28:39,120 --> 00:28:43,440 AND SO HOW CAN WE FACILITATE 694 00:28:43,440 --> 00:28:45,880 DIVERSE PARTICIPATION? 695 00:28:45,880 --> 00:28:48,200 COMMUNICATION, COMMUNICATION AND 696 00:28:48,200 --> 00:28:48,760 COMMUNICATION. 697 00:28:48,760 --> 00:28:50,480 AND LANGUAGE IS NOT ENOUGH. 698 00:28:50,480 --> 00:28:53,720 WE NEED CULTURAL COMPETENCE AND 699 00:28:53,720 --> 00:28:55,840 BEHAVIORS THAT WOULD NOT ONLY 700 00:28:55,840 --> 00:28:57,960 INSPIRE TRUST BUT ALSO IMPROVE 701 00:28:57,960 --> 00:29:00,360 COLLABORATION. 702 00:29:00,360 --> 00:29:03,600 SOME TOPICS LIKE DEVELOPMENTAL 703 00:29:03,600 --> 00:29:05,880 DISABILITIES REALLY NEED 704 00:29:05,880 --> 00:29:11,280 RESEARCH TEAMS WHO HAVE SUPERIOR 705 00:29:11,280 --> 00:29:12,720 LANGUAGE SKILLS IN THE 706 00:29:12,720 --> 00:29:14,800 PARTICIPANTS NATIVE LANGUAGE. 707 00:29:14,800 --> 00:29:18,240 TO BUILD DIVERSITY IN THE 708 00:29:18,240 --> 00:29:20,240 RESEARCH TEAM IS VERY IMPORTANT 709 00:29:20,240 --> 00:29:22,800 AND LASTLY ACTUALLY ENTERING 710 00:29:22,800 --> 00:29:24,040 COMMUNITIES IS SOMETHING THAT WE 711 00:29:24,040 --> 00:29:25,960 NEED TO DO MUCH MORE OF IN 712 00:29:25,960 --> 00:29:28,320 ADDITION TO MOBILE AND ON-LINE 713 00:29:28,320 --> 00:29:30,480 TECHNOLOGIES TO ENHANCE 714 00:29:30,480 --> 00:29:38,240 PARTICIPATION IN REGISTRIES. 715 00:29:38,240 --> 00:29:40,400 AND WE ALWAYS HAVE TO BALANCE 716 00:29:40,400 --> 00:29:41,920 THE VALUE VERSUS THE BURDEN. 717 00:29:41,920 --> 00:29:46,600 BUT THE BURDEN REALLY IS MORE 718 00:29:46,600 --> 00:29:48,120 IMPORTANT BECAUSE IT -- THERE IS 719 00:29:48,120 --> 00:29:50,800 A BURDEN TO THE PARTICIPATION 720 00:29:50,800 --> 00:29:52,240 AND WE HAVE TO BE AWARE OF THAT 721 00:29:52,240 --> 00:29:54,600 AND TO BUILD BRIDGES BETWEEN 722 00:29:54,600 --> 00:29:55,720 ACADEMIC CENTERS AND COMMUNITY 723 00:29:55,720 --> 00:29:56,280 PRACTICES. 724 00:29:56,280 --> 00:30:00,720 THE LATTER BEING WHERE MORE 725 00:30:00,720 --> 00:30:03,520 MINORITY POPULATIONS WILL GO FOR 726 00:30:03,520 --> 00:30:05,400 THEIR CARE. 727 00:30:05,400 --> 00:30:07,760 TO IMPROVE CARE WITH FUNDING FOR 728 00:30:07,760 --> 00:30:08,160 BOTH. 729 00:30:08,160 --> 00:30:10,320 TO REPORT THE RESEARCH OUTCOMES 730 00:30:10,320 --> 00:30:12,480 BACK TO COMMUNITIES. 731 00:30:12,480 --> 00:30:15,000 AND TO RETURN NEW RESEARCH 732 00:30:15,000 --> 00:30:17,000 RESULTS TO PARTICIPANTS SO THAT 733 00:30:17,000 --> 00:30:21,240 WOULD THEN INCENTIVIZE FUTURE 734 00:30:21,240 --> 00:30:22,000 PARTICIPATION. 735 00:30:22,000 --> 00:30:24,680 TO LOGISTICALLY COORDINATE BOTH 736 00:30:24,680 --> 00:30:26,520 RESEARCH AND CLINICAL CARE. 737 00:30:26,520 --> 00:30:29,720 SOMETIMES FAMILIES ON A DAILY 738 00:30:29,720 --> 00:30:32,080 WAGE MAY NOT BE ABLE TO COME TWO 739 00:30:32,080 --> 00:30:33,120 DAYS TO A HOSPITAL. 740 00:30:33,120 --> 00:30:37,480 SO TO HAVE THE RESEARCH STUDY AT 741 00:30:37,480 --> 00:30:39,120 THE SAME TIME WHEN THEY HAVE 742 00:30:39,120 --> 00:30:40,680 THEIR CLINICAL CARE. 743 00:30:40,680 --> 00:30:42,120 TO LEARN WITH OTHERS THAT WORK 744 00:30:42,120 --> 00:30:43,920 WITH DIVERSE POPULATION GROUPS 745 00:30:43,920 --> 00:30:45,800 AND IMPROVE THE SKILL SETS OF 746 00:30:45,800 --> 00:30:47,200 OUR RESEARCH TEAMS. 747 00:30:47,200 --> 00:30:49,840 AND TO USE ON-LINE MESSAGING AND 748 00:30:49,840 --> 00:30:52,080 CONSENT FORMS WHERE WE CAN BUT 749 00:30:52,080 --> 00:30:53,560 ALWAYS MAKE SURE WE HAVE 750 00:30:53,560 --> 00:30:58,560 APPROPRIATE TRANSLATION. 751 00:30:58,560 --> 00:31:01,120 AND SO WHEN WE ASKED OUR 752 00:31:01,120 --> 00:31:02,600 RESEARCHERS TO PROVIDE SOME 753 00:31:02,600 --> 00:31:04,160 WORDS THAT REPRESENTED THEIR 754 00:31:04,160 --> 00:31:08,080 BARRIERS AND CHALLENGES TO 755 00:31:08,080 --> 00:31:11,160 INCLUDING DIVERSE COMMUNITY WITH 756 00:31:11,160 --> 00:31:12,560 DOWN SYNDROME THESE ARE THE 757 00:31:12,560 --> 00:31:16,360 WORDS THAT CAME OUT. 758 00:31:16,360 --> 00:31:19,400 TRUST, LANGUAGE, CONVEYING 759 00:31:19,400 --> 00:31:21,160 BENEFIT AND LOGISTICS. 760 00:31:21,160 --> 00:31:22,840 THESE ARE AREAS THAT WE CAN ALL 761 00:31:22,840 --> 00:31:24,960 WORK ON TOGETHER BUT HOW 762 00:31:24,960 --> 00:31:30,080 SPECIFICALLY CAN NIH HELP? 763 00:31:30,080 --> 00:31:32,480 THIS IS WHAT WE FELT. 764 00:31:32,480 --> 00:31:34,840 WE MUST COLLABORATE WITH 765 00:31:34,840 --> 00:31:35,720 NATIONAL ORGANIZATIONS IN DOWN 766 00:31:35,720 --> 00:31:37,880 SYNDROME RESEARCH. 767 00:31:37,880 --> 00:31:39,640 CLINICIANS NEED TO BE ENCOURAGED 768 00:31:39,640 --> 00:31:41,600 TO IMPROVE FLEXIBILITY AND 769 00:31:41,600 --> 00:31:42,920 SCHEDULING. 770 00:31:42,920 --> 00:31:44,360 ADDRESS THE NEED FOR STUDY 771 00:31:44,360 --> 00:31:48,160 PARTNERS TO ACTUALLY ACCOMPANY 772 00:31:48,160 --> 00:31:49,680 PARTICIPANTS THROUGHOUT STUDIES. 773 00:31:49,680 --> 00:31:51,320 IMPROVE COMPENSATION. 774 00:31:51,320 --> 00:31:53,000 IMPROVE LOGISTICS. 775 00:31:53,000 --> 00:31:55,600 SHARE EXPERIENCES AMONG 776 00:31:55,600 --> 00:31:56,600 RESEARCHERS. 777 00:31:56,600 --> 00:31:58,520 BUILD RELATIONSHIPS IN THE 778 00:31:58,520 --> 00:32:01,480 COMMUNITY SUCH AS ADVOCATES IN 779 00:32:01,480 --> 00:32:02,600 FAITH-BASED GROUPS. 780 00:32:02,600 --> 00:32:05,880 AND ALSO ENCOURAGE STUDENTS AND 781 00:32:05,880 --> 00:32:08,240 RESEARCHERS FROM LESS 782 00:32:08,240 --> 00:32:09,440 REPRESENTED GROUPS. 783 00:32:09,440 --> 00:32:11,720 SO WHAT DID WE TAKE HOME WITH 784 00:32:11,720 --> 00:32:14,680 US? 785 00:32:14,680 --> 00:32:16,680 HOW CAN WE HELP AND THIS IS WHAT 786 00:32:16,680 --> 00:32:20,440 THE RESEARCHERS SUGGESTED. 787 00:32:20,440 --> 00:32:23,320 SUPPORTING EFFORTS TO INCREASE 788 00:32:23,320 --> 00:32:25,200 DIVERSITY BY MELDING CLINICAL 789 00:32:25,200 --> 00:32:27,560 CARE WITH RESEARCH AND FUNDING 790 00:32:27,560 --> 00:32:30,400 THOSE SORTS OF PROJECTS. 791 00:32:30,400 --> 00:32:31,960 INCLUDING COMMUNITY SUPPORT IN 792 00:32:31,960 --> 00:32:34,400 SOME OF OUR FUNDING MAKE I WILLS 793 00:32:34,400 --> 00:32:38,600 SO RESEARCHERS CAN * MAINTAIN 794 00:32:38,600 --> 00:32:39,160 THEIR CONNECTION TO THE 795 00:32:39,160 --> 00:32:39,600 COMMUNITY. 796 00:32:39,600 --> 00:32:41,840 ADDRESS THE ROLE OF MEDICAL 797 00:32:41,840 --> 00:32:43,840 DEVICES THAT MAY HAVE A 798 00:32:43,840 --> 00:32:45,320 PARTICULAR MATCH WITH A 799 00:32:45,320 --> 00:32:46,960 PARTICULAR RACIAL GROUP OR 800 00:32:46,960 --> 00:32:48,280 PHYSICAL CHARACTERISTIC. 801 00:32:48,280 --> 00:32:51,560 CONSIDER DIVERSITY, COMMUNITY 802 00:32:51,560 --> 00:32:54,360 BUILDING AND TECHNOLOGY 803 00:32:54,360 --> 00:32:56,800 SOLUTIONS IN TERMS OF EVALUATION 804 00:32:56,800 --> 00:32:59,200 OF HOW WE DECIDE WHO GETS 805 00:32:59,200 --> 00:33:00,000 FUNDED. 806 00:33:00,000 --> 00:33:03,400 AND MOST IMPORTANTLY BUILD 807 00:33:03,400 --> 00:33:08,360 COHORTS AS WAS MENTIONED THAT 808 00:33:08,360 --> 00:33:10,360 TRULY INCLUDE PEOPLE ALL PEOPLE 809 00:33:10,360 --> 00:33:12,400 WITH DOWN SYNDROME. 810 00:33:12,400 --> 00:33:15,600 AND SO THAT GAVE US A LOT OF 811 00:33:15,600 --> 00:33:17,240 HOMEWORK TO DO. 812 00:33:17,240 --> 00:33:18,920 WE THANK RESEARCHERS FOR 813 00:33:18,920 --> 00:33:21,120 PROVIDING INFORMATION ON THIS 814 00:33:21,120 --> 00:33:23,720 LISTENING SESSION TO US. 815 00:33:23,720 --> 00:33:25,040 THAT ENDS MY PORTION OF THE 816 00:33:25,040 --> 00:33:25,720 TALK. 817 00:33:25,720 --> 00:33:28,680 I'D LIKE TO INTRODUCE TO YOU 818 00:33:28,680 --> 00:33:30,120 DR. MALIHA ILIAS. 819 00:33:30,120 --> 00:33:31,960 WE'RE FORTUNATE TO HAVE HER. 820 00:33:31,960 --> 00:33:34,840 A PROGRAM DIRECTOR AT THE HEALTH 821 00:33:34,840 --> 00:33:36,200 INEQUITIES AND GLOBAL HEALTH 822 00:33:36,200 --> 00:33:38,760 BRANCH AT THE CENTER OF 823 00:33:38,760 --> 00:33:40,440 TRANSLATIONAL RESEARCH AND 824 00:33:40,440 --> 00:33:42,560 IMPLEMENTATION SCIENCES AT THE 825 00:33:42,560 --> 00:33:45,000 NATIONAL HEART, LUNG BLOOD 826 00:33:45,000 --> 00:33:45,480 INSTITUTE. 827 00:33:45,480 --> 00:33:47,200 SHE LEADS THE COMMUNITY 828 00:33:47,200 --> 00:33:51,280 ENGAGEMENT ALLIANCE -- RESOURCE. 829 00:33:51,280 --> 00:33:53,920 INCLUDING GRANTS, COMPETITIVE 830 00:33:53,920 --> 00:33:55,600 AGREEMENTS RELATED TO GLOBAL AND 831 00:33:55,600 --> 00:33:57,000 DOMESTIC HEALTH EQUITY RESEARCH. 832 00:33:57,000 --> 00:34:00,720 AND SHE IS AN EXPERT IN HEALTH 833 00:34:00,720 --> 00:34:01,560 COMMUNICATION RESEARCH 834 00:34:01,560 --> 00:34:03,520 ESPECIALLY IN LOW AND MIDDLE 835 00:34:03,520 --> 00:34:04,560 INCOME COUNTRIES. 836 00:34:04,560 --> 00:34:08,160 OVER TO YOU DR. ILIAS 837 00:34:08,160 --> 00:34:14,840 >> THANK YOU SO MUCH, ARUNA. 838 00:34:14,840 --> 00:34:17,800 SO I'M GOING TO PACE MYSELF AS 839 00:34:17,800 --> 00:34:20,680 ARUNA DID FOR OUR TRANSLATORS. 840 00:34:20,680 --> 00:34:22,800 COULD THE ORGANIZERS PLEASE 841 00:34:22,800 --> 00:34:24,920 CONFIRM THAT I HAVE 15 MINUTES 842 00:34:24,920 --> 00:34:26,080 FOR THIS PRESENTATION. 843 00:34:26,080 --> 00:34:26,520 PERFECT. 844 00:34:26,520 --> 00:34:29,320 THANK YOU SO MUCH. 845 00:34:29,320 --> 00:34:31,480 THANKS SO MUCH FOR THE 846 00:34:31,480 --> 00:34:31,920 INTRODUCTION. 847 00:34:31,920 --> 00:34:34,880 I'M HERE TODAY TO TALK TO YOU 848 00:34:34,880 --> 00:34:39,880 ABOUT THE COMMUNITY ENGAGEMENT 849 00:34:39,880 --> 00:34:40,520 ALLIANCE. 850 00:34:40,520 --> 00:34:45,040 SO FOR THOSE OF YOU WHO ARE NOT 851 00:34:45,040 --> 00:34:49,640 FAMILIAR WITH CEAL THIS WAS A 852 00:34:49,640 --> 00:34:51,960 PROGRAM THAT NIH STARTED IN 853 00:34:51,960 --> 00:34:53,680 RESPONSE TO THE HEALTH 854 00:34:53,680 --> 00:34:55,120 DISPARITIES AND HEALTH 855 00:34:55,120 --> 00:34:57,440 INEQUITIES THAT WERE UNEARTHED 856 00:34:57,440 --> 00:35:00,160 DURING THE PANDEMIC AND THAT 857 00:35:00,160 --> 00:35:01,640 ESSENTIALLY DISPROPORTIONATELY 858 00:35:01,640 --> 00:35:02,920 AFFECTED PEOPLE FROM SPECIFIC 859 00:35:02,920 --> 00:35:03,960 COMMUNITIES. 860 00:35:03,960 --> 00:35:07,760 SO AS PART OF THE CEAL ALLIANCE 861 00:35:07,760 --> 00:35:10,720 AS THE RESOURCES WHICH INCLUDES 862 00:35:10,720 --> 00:35:12,760 21 TEAMS ACROSS THE UNITED 863 00:35:12,760 --> 00:35:14,400 STATES AND THESE INCLUDE 864 00:35:14,400 --> 00:35:16,400 ACADEMIC AND COMMUNITY PARTNERS 865 00:35:16,400 --> 00:35:18,400 AS THOSE RESOURCES GREW THERE 866 00:35:18,400 --> 00:35:20,680 WAS A NEED TO REALIZE THAT WE 867 00:35:20,680 --> 00:35:25,240 COULD POTENTIALLY SHARE 868 00:35:25,240 --> 00:35:26,560 RESOURCES WITH OTHER CLINICAL 869 00:35:26,560 --> 00:35:28,880 RESEARCHERS WHO ARE TRYING TO 870 00:35:28,880 --> 00:35:30,240 IMPROVE THEIR COMMUNITY 871 00:35:30,240 --> 00:35:32,240 ENGAGEMENT AND INCLUSIVE 872 00:35:32,240 --> 00:35:33,080 PARTICIPATION EFFORTS. 873 00:35:33,080 --> 00:35:35,160 WHICH IS WHY THIS PARTICULAR 874 00:35:35,160 --> 00:35:39,560 PROGRAM WAS LAUNCHED IN 2021 875 00:35:39,560 --> 00:35:40,800 THROUGH A RESEARCH OPPORTUNITY 876 00:35:40,800 --> 00:35:44,960 ANNOUNCEMENT. 877 00:35:44,960 --> 00:35:48,480 SO HERE I WANT TO HIGHLIGHT THAT 878 00:35:48,480 --> 00:35:50,920 WE AWARDED THIS PROGRAM TO THE 879 00:35:50,920 --> 00:35:52,400 UNIVERSITY OF PITTSBURGH 880 00:35:52,400 --> 00:35:53,960 CLINICAL AND TRANSLATIONAL 881 00:35:53,960 --> 00:35:55,680 SCIENCES INSTITUTE. 882 00:35:55,680 --> 00:35:58,920 DR. LIZ MILLER AND DR. MELINDA 883 00:35:58,920 --> 00:36:02,560 -- ARE THE PIs AND ARE LEADING 884 00:36:02,560 --> 00:36:03,560 THIS PARTICULAR EFFORT. 885 00:36:03,560 --> 00:36:08,160 BUT THEY ARE JOINED WITH DR. AL 886 00:36:08,160 --> 00:36:11,600 RICHMOND AND THE PARTNERSHIPS 887 00:36:11,600 --> 00:36:12,960 FOR HELP. 888 00:36:12,960 --> 00:36:15,720 IT HELPS FACILITATE THE WORK 889 00:36:15,720 --> 00:36:18,120 BETWEEN ACADEMIC AND NONACADEMIC 890 00:36:18,120 --> 00:36:19,800 AND ESPECIALLY COMMUNITY 891 00:36:19,800 --> 00:36:21,480 PARTNERS IN RESEARCH AND YOU CAN 892 00:36:21,480 --> 00:36:23,240 SEE THERE ARE OTHER COMMUNITY 893 00:36:23,240 --> 00:36:24,800 PARTNERS THAT ROUND OUT THE 894 00:36:24,800 --> 00:36:27,920 TEAM. 895 00:36:27,920 --> 00:36:33,520 SO AGAIN THE MAIN PURPOSE OF THE 896 00:36:33,520 --> 00:36:43,720 RESOURCE -- 897 00:36:48,120 --> 00:36:49,880 >> WE'RE TRYING TO HELP CLINICAL 898 00:36:49,880 --> 00:36:52,440 RESEARCHERS THAT ARE FUNDED BY 899 00:36:52,440 --> 00:36:55,680 NIH AND IMPROVE THEIR COMMUNITY 900 00:36:55,680 --> 00:36:58,200 ENGAGEMENT AND INCLUDE 901 00:36:58,200 --> 00:36:59,120 PARTICIPATION EFFORTS BY 902 00:36:59,120 --> 00:37:02,000 LEVERAGING THE RESOURCES THAT WE 903 00:37:02,000 --> 00:37:03,280 HAVE ACCESS TO. 904 00:37:03,280 --> 00:37:05,400 BEFORE THE MIDDLE BOX WAS 905 00:37:05,400 --> 00:37:08,440 POPULATED I WANTED YOU TO FOCUS 906 00:37:08,440 --> 00:37:09,560 ON THE FIRST AND THE LAST PART 907 00:37:09,560 --> 00:37:12,040 OF THE PROCESS. 908 00:37:12,040 --> 00:37:18,400 THE CEACR HAS SET UP STANDARD 909 00:37:18,400 --> 00:37:19,960 OPERATING PROCEDURES OF THE 910 00:37:19,960 --> 00:37:21,880 EXPERTISE AND RESOURCES 911 00:37:21,880 --> 00:37:23,720 AVAILABLE WITH REGARDS TO 912 00:37:23,720 --> 00:37:24,960 COMMUNITY ENGAGEMENT. 913 00:37:24,960 --> 00:37:30,560 I ENCOURAGE YOU TO VISIT THE 914 00:37:30,560 --> 00:37:35,160 CEAL ALLIANCE AND THE CEACR WEB 915 00:37:35,160 --> 00:37:38,880 PAGE. 916 00:37:38,880 --> 00:37:41,440 BUT THERE ARE MANY, MANY 917 00:37:41,440 --> 00:37:43,280 RESOURCES THAT ALL OF THESE 21 918 00:37:43,280 --> 00:37:45,760 TEAMS ACROSS THE U.S. ARE ABLE 919 00:37:45,760 --> 00:37:52,080 TO PROVIDE NOW HAVING WORKED TO 920 00:37:52,080 --> 00:37:55,160 FIGHT AGAINST COVID-19 921 00:37:55,160 --> 00:37:56,040 DISPARITIES INCLUDING 922 00:37:56,040 --> 00:37:58,600 INFORMATION ON VACCINATING 923 00:37:58,600 --> 00:38:00,960 CHILDREN, COMMUNICATION 924 00:38:00,960 --> 00:38:02,000 MATERIALS ETC. 925 00:38:02,000 --> 00:38:04,880 SO THE SEEKER TEAM HAS PUT 926 00:38:04,880 --> 00:38:14,760 TOGETHER A MAP. 927 00:38:14,760 --> 00:38:17,240 -- FOR EXAMPLE SOMEBODY PART OF 928 00:38:17,240 --> 00:38:19,440 THE INCLUDE NETWORK -- WHO ARE 929 00:38:19,440 --> 00:38:21,440 LOOKING TO IMPROVE THEIR 930 00:38:21,440 --> 00:38:23,320 COMMUNITY EARN GAUGEMENT AND 931 00:38:23,320 --> 00:38:25,040 INCLUSIVE PARTICIPATION THEY 932 00:38:25,040 --> 00:38:27,400 APPROACH THE CEACR TEAM WITH A 933 00:38:27,400 --> 00:38:28,760 CONSULT REQUEST. 934 00:38:28,760 --> 00:38:31,560 ONCE WE ASSESS THE SCOPE OF THE 935 00:38:31,560 --> 00:38:34,240 CONSULTATION THE CEACR TEAM THEN 936 00:38:34,240 --> 00:38:37,640 USES THE ASSET MAP TO CURATE A 937 00:38:37,640 --> 00:38:41,240 PANEL OF CUSTOMIZED COMMUNITY 938 00:38:41,240 --> 00:38:43,120 ENGAGEMENT EXPERTS ALONG WITH 939 00:38:43,120 --> 00:38:43,800 EXPERTS FROM THE COMMUNITIES 940 00:38:43,800 --> 00:38:45,880 THAT THE USERS ARE ACTIVELY 941 00:38:45,880 --> 00:38:48,360 TRYING TO ENGAGE WITH AND THESE 942 00:38:48,360 --> 00:38:49,480 PANELISTS COME TOGETHER TO 943 00:38:49,480 --> 00:38:52,760 PROVIDE THE CONSULTATION WHICH 944 00:38:52,760 --> 00:38:55,000 IS STEP THREE HERE TO EVALUATE 945 00:38:55,000 --> 00:38:58,400 THE NEEDS AND DEVELOP TAILORED 946 00:38:58,400 --> 00:38:59,960 RECOMMENDATIONS FOR THAT 947 00:38:59,960 --> 00:39:01,720 PARTICULAR CONSULLING. 948 00:39:01,720 --> 00:39:05,720 A LOT OF WHAT I'M SAYING SEEMS 949 00:39:05,720 --> 00:39:07,480 ABSTRACT BUT THERE ARE SLIDES 950 00:39:07,480 --> 00:39:09,280 WHICH WILL SHOWCASE SOME OF THE 951 00:39:09,280 --> 00:39:11,040 ACTIVE CONSULTS THAT WE'RE 952 00:39:11,040 --> 00:39:13,040 ENGAGED IN AND THAT WILL HELP 953 00:39:13,040 --> 00:39:15,200 EXPLAIN HOW THE PROCESS WORKS. 954 00:39:15,200 --> 00:39:17,240 ONCE THE CONSULTATION TAKES 955 00:39:17,240 --> 00:39:18,760 PLACE THE CEACR TEAM PUTS 956 00:39:18,760 --> 00:39:20,080 TOGETHER THE RECOMMENDATIONS 957 00:39:20,080 --> 00:39:22,760 THAT HAVE BEEN MADE BY THIS 958 00:39:22,760 --> 00:39:25,840 SPECIAL CURATED PANEL OF EXPERTS 959 00:39:25,840 --> 00:39:28,320 FOR THE PARTICULAR CONSUL TEE 960 00:39:28,320 --> 00:39:31,240 AND WE * TRY TO PROVIDE THIS IN 961 00:39:31,240 --> 00:39:35,600 A QUICK TURN AROUND FASHION. 962 00:39:35,600 --> 00:39:37,600 CONSULTS NEED TO BE QUICK. 963 00:39:37,600 --> 00:39:39,680 NOT TO SLOW IT DOWN. 964 00:39:39,680 --> 00:39:43,800 SO WE TRY TO DO THESE CONSULTS 965 00:39:43,800 --> 00:39:44,520 WITHIN 30 DAYS. 966 00:39:44,520 --> 00:39:46,840 OF COURSE SCHEDULING SOMETIMES 967 00:39:46,840 --> 00:39:49,320 MEANS THERE IS A 30 DAYTIME LINE 968 00:39:49,320 --> 00:39:51,360 THAT IS EXTENDED. 969 00:39:51,360 --> 00:39:53,880 BUT OUR TARGET IS TO PROVIDE 970 00:39:53,880 --> 00:39:56,040 CONSULTS IN A QUICK FASHION AS 971 00:39:56,040 --> 00:39:58,160 TO NOT TO HINDER CLINICAL 972 00:39:58,160 --> 00:39:58,800 RESEARCH. 973 00:39:58,800 --> 00:40:04,200 AT THE END WE GO BACK TO OUR 974 00:40:04,200 --> 00:40:08,280 CONSULTEES -- 60 DAYS AFTER THE 975 00:40:08,280 --> 00:40:11,160 CONSULT -- 180 DAYS AFTER TO GET 976 00:40:11,160 --> 00:40:13,640 THE FEEDBACK THAT HELPS US AND 977 00:40:13,640 --> 00:40:16,400 CONTINUE TO REFINE OUR PROCESS. 978 00:40:16,400 --> 00:40:19,680 THAT IS WHAT I WAS TRYING TO 979 00:40:19,680 --> 00:40:22,040 SHOWCASE INITIALLY -- WE'RE 980 00:40:22,040 --> 00:40:24,240 CONSTANTLY TRYING TO LEARN TO 981 00:40:24,240 --> 00:40:27,320 PROVIDE MUCH MORE TARGETED 982 00:40:27,320 --> 00:40:29,320 TAILORED CONSULTS TO EACH OF THE 983 00:40:29,320 --> 00:40:37,760 PEOPLE WHO COME IN. 984 00:40:37,760 --> 00:40:39,760 SO THESE ARE SOME OF THE TOPIC 985 00:40:39,760 --> 00:40:41,680 THAT'S THE CEACR TEAM CAN 986 00:40:41,680 --> 00:40:43,760 PROVIDE CONSULTS ON. 987 00:40:43,760 --> 00:40:45,520 THIS WILL AGAIN BECOME A LITTLE 988 00:40:45,520 --> 00:40:47,320 BIT MORE EASIER TO UNDERSTAND 989 00:40:47,320 --> 00:40:49,520 FOR MANY OF OUR AUDIENCE MEMBERS 990 00:40:49,520 --> 00:40:52,520 WHEN I GO THROUGH SOME OF THE 991 00:40:52,520 --> 00:40:54,040 EXAMPLES. 992 00:40:54,040 --> 00:40:57,240 BUT THESE INCLUDE THINGS LIKE 993 00:40:57,240 --> 00:40:58,120 DEVELOPING COMMUNITY COMPETENT 994 00:40:58,120 --> 00:40:59,920 OUTREACH AND COMMUNICATION 995 00:40:59,920 --> 00:41:02,200 STRATEGIES AND INTERVENTIONS. 996 00:41:02,200 --> 00:41:03,760 UNDERSTANDING THE BARRIERS TO 997 00:41:03,760 --> 00:41:05,080 INCLUSIVE PARTICIPATION AND 998 00:41:05,080 --> 00:41:06,720 RESEARCH AND MANY WERE BROUGHT 999 00:41:06,720 --> 00:41:09,600 UP BY LINDA AND ARUNA AS WELL 1000 00:41:09,600 --> 00:41:11,400 SUCH AS TRANSPORTATION ISSUES, 1001 00:41:11,400 --> 00:41:14,960 LANGUAGE BARRIERS ETC. 1002 00:41:14,960 --> 00:41:17,080 BUILDING AN INCLUSIVE RESEARCH 1003 00:41:17,080 --> 00:41:18,360 WORKFORCE. 1004 00:41:18,360 --> 00:41:22,080 ADDRESSING VACCINE HESITANCY IN 1005 00:41:22,080 --> 00:41:24,400 MINORITY COMMUNITIES AS WELL AS 1006 00:41:24,400 --> 00:41:25,920 IMPROVING COMMUNITY ENGAGED 1007 00:41:25,920 --> 00:41:31,640 RESEARCH STUDY DESIGNS. 1008 00:41:31,640 --> 00:41:35,360 SO THIS IS A QUICK SNAPSHOT OF 1009 00:41:35,360 --> 00:41:36,480 WHERE WE ARE WITH CEACR. 1010 00:41:36,480 --> 00:41:39,400 IT WAS AWARDED IN 2021. 1011 00:41:39,400 --> 00:41:41,000 THE TEAM ACTIVELY STARTED 1012 00:41:41,000 --> 00:41:43,240 WORKING IN NOVEMBER OF 2021. 1013 00:41:43,240 --> 00:41:45,720 SO IT HAS NOT YET BEEN A YEAR 1014 00:41:45,720 --> 00:41:49,240 BUT IN THIS TIME CEACR HAS DONE 1015 00:41:49,240 --> 00:41:53,000 A PILOT CONSULT WITH THE ACTIVE 1016 00:41:53,000 --> 00:41:57,640 TEAM AND THEY'VE DONE 11 OTHER 1017 00:41:57,640 --> 00:41:58,400 CONSULTS. 1018 00:41:58,400 --> 00:42:00,880 WITH MANY OCCURRING OVER THE 1019 00:42:00,880 --> 00:42:02,320 SUMMER SO ONCE WE WERE ABLE TO 1020 00:42:02,320 --> 00:42:04,240 DO THE PILOT AND REFINE OUR 1021 00:42:04,240 --> 00:42:06,120 PROCESS AND DO THE PROMOTION AND 1022 00:42:06,120 --> 00:42:08,000 HELP INFORM PEOPLE THAT CEACR 1023 00:42:08,000 --> 00:42:10,600 EXIST AS A RESOURCE FOR NIH 1024 00:42:10,600 --> 00:42:11,880 FUNDED RESEARCHERS AS I'M DOING 1025 00:42:11,880 --> 00:42:16,120 HERE TODAY FOR THE INCLUDE 1026 00:42:16,120 --> 00:42:17,920 COMMUNITY OUR CONSULT NUMBERS 1027 00:42:17,920 --> 00:42:18,760 ARE INCREASING. 1028 00:42:18,760 --> 00:42:19,840 I SEE THE CHAT. 1029 00:42:19,840 --> 00:42:21,720 I NEED TO SLOW DOWN A LITTLE BIT 1030 00:42:21,720 --> 00:42:22,280 MORE. 1031 00:42:22,280 --> 00:42:22,800 FORGIVE ME. 1032 00:42:22,800 --> 00:42:25,160 I'M GOING TO BE A LITTLE BIT 1033 00:42:25,160 --> 00:42:26,920 SLOWER IN MY SPEECH. 1034 00:42:26,920 --> 00:42:29,320 SO IN THESE 11 CONSULTS WE'VE 1035 00:42:29,320 --> 00:42:31,800 WORKED WITH MULTIPLE RESEARCH 1036 00:42:31,800 --> 00:42:35,520 PROGRAM USERS AND INCLUDING SOME 1037 00:42:35,520 --> 00:42:37,280 MAJOR NIH FUNDED CLINICAL 1038 00:42:37,280 --> 00:42:37,920 TRIALS. 1039 00:42:37,920 --> 00:42:41,600 SUCH AS ACTIVE 6 WHICH IS 1040 00:42:41,600 --> 00:42:43,480 ACTIVELY TRYING TO REPURPOSE 1041 00:42:43,480 --> 00:42:44,840 TREATMENTS FOR THE TREATMENT OF 1042 00:42:44,840 --> 00:42:47,680 COVID AS WELL AS RECOVER WHICH 1043 00:42:47,680 --> 00:42:50,400 IS CLINICAL TRIAL NETWORKS THAT 1044 00:42:50,400 --> 00:42:52,360 ARE FOCUSED OFF LONG COVID 1045 00:42:52,360 --> 00:42:53,040 RESEARCH. 1046 00:42:53,040 --> 00:42:57,840 WE'VE ALSO WORKED WITH OTHER 1047 00:42:57,840 --> 00:42:59,960 CEAL TEAMS THAT WANT TO IMPROVE 1048 00:42:59,960 --> 00:43:01,840 CERTAIN ASPECTS OF THEIR 1049 00:43:01,840 --> 00:43:04,200 COMMUNITY ENGAGEMENT. 1050 00:43:04,200 --> 00:43:05,920 THROUGH THESE CONSULTS WE'RE 1051 00:43:05,920 --> 00:43:08,120 ALSO ACTIVELY WORKING WITH 1052 00:43:08,120 --> 00:43:08,880 VARIOUS COMMUNITY GROUPS 1053 00:43:08,880 --> 00:43:11,680 INCLUDING SPANISH SPEAKERS, 1054 00:43:11,680 --> 00:43:16,120 RURAL POPULATIONS, AMERICAN 1055 00:43:16,120 --> 00:43:19,120 INDIANSERS OLDER ADULTS * TO 1056 00:43:19,120 --> 00:43:20,800 MAKE A FEW AND THIS HIGHLIGHTS 1057 00:43:20,800 --> 00:43:24,800 WHAT OUR CONSULTS ENTAIL. 1058 00:43:24,800 --> 00:43:26,360 THE INTAKE AND THE MEETING WITH 1059 00:43:26,360 --> 00:43:29,920 THE EXPERT PANEL THAT AND THEN 1060 00:43:29,920 --> 00:43:32,040 THE DEVELOPMENT OF TAILORED 1061 00:43:32,040 --> 00:43:33,680 RECOMMENDATIONS BASED ON WHAT 1062 00:43:33,680 --> 00:43:39,040 THE INITIAL ASK WAS. 1063 00:43:39,040 --> 00:43:42,040 SO AS I MENTIONED EARLIER I 1064 00:43:42,040 --> 00:43:45,240 WANTED TO SHOWCASE WHAT A 1065 00:43:45,240 --> 00:43:47,160 CONSULT COULD ENTAIL BY USING 1066 00:43:47,160 --> 00:43:49,120 SOME EXAMPLES OF ACTIVE 1067 00:43:49,120 --> 00:43:51,240 CONSULTATION THAT'S WE'VE JUST 1068 00:43:51,240 --> 00:43:51,640 DONE. 1069 00:43:51,640 --> 00:43:54,320 SO ONE CONSULT THAT WE DID WAS 1070 00:43:54,320 --> 00:43:56,280 ACTUALLY WITH THE ACTIVE 6 1071 00:43:56,280 --> 00:43:57,960 PITTSBURGH SITE AND THEY WERE 1072 00:43:57,960 --> 00:44:00,640 TRYING TO IMPROVE THEIR 1073 00:44:00,640 --> 00:44:01,880 ENROLLMENT OF POPULATIONS THAT 1074 00:44:01,880 --> 00:44:04,560 ARE GENERALLY UNDER REPRESENTED 1075 00:44:04,560 --> 00:44:06,240 IN BIOMEDICAL RESEARCH THAT. 1076 00:44:06,240 --> 00:44:11,520 IS WHAT THE ACRONYM UBR STANDS 1077 00:44:11,520 --> 00:44:14,840 FOR UNDER REPRESENTED BIOMEDICAL 1078 00:44:14,840 --> 00:44:16,160 RESEARCH. 1079 00:44:16,160 --> 00:44:18,680 BECAUSE WE KNOW GROUPS ARE NOT 1080 00:44:18,680 --> 00:44:20,360 WELL REPRESENTED IN BIOMEDICAL 1081 00:44:20,360 --> 00:44:20,800 RESEARCH. 1082 00:44:20,800 --> 00:44:24,320 SO THE ACTIVE 6 PIT TEAM WAS 1083 00:44:24,320 --> 00:44:26,800 TRYING TO IMPROVE THEIR 1084 00:44:26,800 --> 00:44:27,920 ENROLLMENT WITHIN THESE GROUPS 1085 00:44:27,920 --> 00:44:30,880 AND THEY CONTACTED US. 1086 00:44:30,880 --> 00:44:33,520 WE DID THE INITIAL INTAKE. 1087 00:44:33,520 --> 00:44:36,160 WE PUT TOGETHER A PANEL OF 1088 00:44:36,160 --> 00:44:39,800 EXPERTS WHICH INCLUDED COMMUNITY 1089 00:44:39,800 --> 00:44:41,000 MEMBERS FROM THE RACIAL GROUPS 1090 00:44:41,000 --> 00:44:42,680 THAT THEY WERE TRYING TO IMPROVE 1091 00:44:42,680 --> 00:44:46,040 THEIR NUMBERS IN THE CLINICAL 1092 00:44:46,040 --> 00:44:47,600 PARTICIPATION AND WHERE THIS 1093 00:44:47,600 --> 00:44:49,040 PARTICULAR PANEL WAS ABLE TO 1094 00:44:49,040 --> 00:44:50,680 PROVIDE THEM WITH VARIOUS 1095 00:44:50,680 --> 00:44:53,120 STRATEGIES ON HOW TO IMPROVE 1096 00:44:53,120 --> 00:44:55,160 ENROLLMENT BY FOCUSING ON THINGS 1097 00:44:55,160 --> 00:44:57,000 LIKE LANGUAGE INCLUSIVITY. 1098 00:44:57,000 --> 00:45:00,840 I THINK LINDA MENTIONED THAT IT 1099 00:45:00,840 --> 00:45:02,720 MATTERS WHAT LANGUAGE THE 1100 00:45:02,720 --> 00:45:05,080 RECRUITERS ARE SPEAKING OR WHAT 1101 00:45:05,080 --> 00:45:08,040 LANGUAGE THE MATERIAL IS 1102 00:45:08,040 --> 00:45:09,720 PROVIDED TO THEM AND COMMUNITY 1103 00:45:09,720 --> 00:45:10,160 MEMBERS. 1104 00:45:10,160 --> 00:45:12,000 ALSO BRIDGING THE DIGITAL 1105 00:45:12,000 --> 00:45:12,440 DIVIDE. 1106 00:45:12,440 --> 00:45:14,440 WE CANNOT ASSUME THAT EVERYONE 1107 00:45:14,440 --> 00:45:16,440 HAS ACCESS TO DIGITAL RESOURCES 1108 00:45:16,440 --> 00:45:18,800 AND HAS THE SAME LEVEL OF 1109 00:45:18,800 --> 00:45:20,040 DIGITAL LITERACY. 1110 00:45:20,040 --> 00:45:22,880 THOSE THINGS NEED TO BE 1111 00:45:22,880 --> 00:45:24,200 ADDRESSED BY THE CLINICAL 1112 00:45:24,200 --> 00:45:25,800 RESEARCHERS WHO WANT THE 1113 00:45:25,800 --> 00:45:27,200 COMMUNITY MEMBERS TO PARTICIPATE 1114 00:45:27,200 --> 00:45:28,280 IN THEIR RESEARCH. 1115 00:45:28,280 --> 00:45:33,120 AND WE NEED TO REMOVE THE BUR 1116 00:45:33,120 --> 00:45:35,360 BURDENS OF ENGAGEMENT. 1117 00:45:35,360 --> 00:45:37,560 PEOPLE HAVE DAY JOBS. 1118 00:45:37,560 --> 00:45:39,240 PEOPLE HAVE OTHER BURDENS 1119 00:45:39,240 --> 00:45:40,560 BECAUSE OF THOSE JOBS. 1120 00:45:40,560 --> 00:45:43,240 THEY ARE UNABLE TO ATTEND 1121 00:45:43,240 --> 00:45:44,960 MULTIPLE DAYS IN ORDER TO 1122 00:45:44,960 --> 00:45:45,960 PARTICIPATE IN CLINICAL 1123 00:45:45,960 --> 00:45:46,960 RESEARCH. 1124 00:45:46,960 --> 00:45:49,480 AND ALSO THE TEAM HELPED THEM 1125 00:45:49,480 --> 00:45:52,000 STRATEGIZE ABOUT REACHING OUT 1126 00:45:52,000 --> 00:45:54,160 AND IDENTIFYING TO TRUSTED 1127 00:45:54,160 --> 00:45:57,040 COMMUNITY PARTNERS. 1128 00:45:57,040 --> 00:45:59,000 SO FOLKS WITH FAITH-BASED 1129 00:45:59,000 --> 00:46:01,080 NETWORKS THAT CAN PROVIDE 1130 00:46:01,080 --> 00:46:02,880 ACCURATE INFORMATION TO THE 1131 00:46:02,880 --> 00:46:04,120 COMMUNITY MEMBERS AND IT'S 1132 00:46:04,120 --> 00:46:05,560 COMING FROM THE MOUTHS OF THE 1133 00:46:05,560 --> 00:46:06,840 COMMUNITY MEMBERS THAT THEY 1134 00:46:06,840 --> 00:46:07,480 TRUST. 1135 00:46:07,480 --> 00:46:11,440 FOR EXAMPLE, THE FAITH-BASED 1136 00:46:11,440 --> 00:46:11,880 LEADERS. 1137 00:46:11,880 --> 00:46:19,120 WE PROVIDED THESE RECOMM -- 1138 00:46:19,120 --> 00:46:20,240 RECOMMENDATIONS AND THEY WERE 1139 00:46:20,240 --> 00:46:20,800 SPEAKER. 1140 00:46:20,800 --> 00:46:23,000 THE CEACR TEAM WAS APPROACHED BY 1141 00:46:23,000 --> 00:46:26,280 THE STAKEHOLDER ADVISORY OF 1142 00:46:26,280 --> 00:46:28,640 COMMITTEE WHO ASKED HOW DO WE 1143 00:46:28,640 --> 00:46:30,560 DISSEMINATE THESE BEST PRACTICES 1144 00:46:30,560 --> 00:46:32,160 FOR COMMUNITY ENGAGEMENT TO ALL 1145 00:46:32,160 --> 00:46:33,720 OF OUR VARIOUS SITES? 1146 00:46:33,720 --> 00:46:38,120 AND THE CEACR TEAM WAS ABLE TO 1147 00:46:38,120 --> 00:46:41,120 THE ACTIVE 6 PITTSBURGH CONSULT 1148 00:46:41,120 --> 00:46:42,920 TO SHOWCASE WHAT THEY LEARNED 1149 00:46:42,920 --> 00:46:44,920 FROM THAT CONSULT A HOW THAT 1150 00:46:44,920 --> 00:46:49,200 COULD BE SHARED ACROSS MULTIPLE 1151 00:46:49,200 --> 00:46:51,200 SITES WITHIN THE ACTIVE 6 1152 00:46:51,200 --> 00:46:51,960 NETWORK. 1153 00:46:51,960 --> 00:46:54,080 ONE THING THAT I WANT TO MENTION 1154 00:46:54,080 --> 00:46:56,600 IS THAT WE'RE LEARNINGS THAT 1155 00:46:56,600 --> 00:46:59,040 CONSULTS HAVE TO BE SPECIFIC TO 1156 00:46:59,040 --> 00:47:00,480 THE RESEARCH SPACE WHERE THE 1157 00:47:00,480 --> 00:47:02,520 RESEARCH IS TAKING PLACE BECAUSE 1158 00:47:02,520 --> 00:47:05,760 THE COMMUNITIES -- THE NEEDS ARE 1159 00:47:05,760 --> 00:47:07,080 GOING TO BE DIFFERENT WHICH IS 1160 00:47:07,080 --> 00:47:08,880 WHY WE ENCOURAGE FOLKS TO REACH 1161 00:47:08,880 --> 00:47:11,080 OUT TO US IF THEY HAVE A 1162 00:47:11,080 --> 00:47:12,640 QUESTION ABOUT IMPROVING THEIR 1163 00:47:12,640 --> 00:47:14,640 COMMUNITY ENGAGEMENT EFFORTS 1164 00:47:14,640 --> 00:47:17,480 PLEASE REACH OUT AND WE COULD 1165 00:47:17,480 --> 00:47:19,920 POTENTIALLY HELP THE CEACR TEAM 1166 00:47:19,920 --> 00:47:21,600 COULD HELP ANSWER QUESTIONS AND 1167 00:47:21,600 --> 00:47:22,960 MAKE THEM SPECIFIC TO THE AREAS 1168 00:47:22,960 --> 00:47:25,440 THAT YOU'RE WORKING IN OR THE 1169 00:47:25,440 --> 00:47:26,880 POPULATIONS THAT YOU'RE HOPING 1170 00:47:26,880 --> 00:47:32,800 TO WORK WITH. 1171 00:47:32,800 --> 00:47:35,320 SO I'M NOT GOING TO GO INTO MUCH 1172 00:47:35,320 --> 00:47:35,960 DETAIL HERE. 1173 00:47:35,960 --> 00:47:39,200 THIS IS REALLY SHOWCASING IN THE 1174 00:47:39,200 --> 00:47:40,640 INTEREST OF TIME I WANT TO 1175 00:47:40,640 --> 00:47:43,680 SHOWCASE THAT CEACR CAN PROVIDE 1176 00:47:43,680 --> 00:47:45,080 A RANGE OF CONSULTS. 1177 00:47:45,080 --> 00:47:47,000 THE ONE THAT I MENTIONED BEFORE 1178 00:47:47,000 --> 00:47:50,040 WITH ACTIVE 6 THAT IS THE FULL 1179 00:47:50,040 --> 00:47:53,160 30 DAY CONSULT THAT I SHOWED THE 1180 00:47:53,160 --> 00:47:54,400 PROCESS FOR. 1181 00:47:54,400 --> 00:47:56,320 BUT THERE ARE QUICKER CONSULTS 1182 00:47:56,320 --> 00:47:58,080 THAT WE'VE ALSO PROVIDED. 1183 00:47:58,080 --> 00:48:00,840 FOR EXAMPLE, FOLKS ARE SOMETIMES 1184 00:48:00,840 --> 00:48:02,600 LOOKING FOR SPEAKERS TO INCLUDE 1185 00:48:02,600 --> 00:48:07,400 IN THEIR WORK SHOPS AND 1186 00:48:07,400 --> 00:48:08,840 CONFERENCES THAT BRING IN THE 1187 00:48:08,840 --> 00:48:10,240 PERSPECTIVE OF THE PATIENTS AND 1188 00:48:10,240 --> 00:48:13,160 THE CAREGIVERS AND WE CAN 1189 00:48:13,160 --> 00:48:16,400 LEVERAGE THE CEAL RESOURCES TO 1190 00:48:16,400 --> 00:48:17,920 FIND THOSE PEOPLE AND PUT THEM 1191 00:48:17,920 --> 00:48:20,920 IN CONTACT WITH THE WORKSHOP 1192 00:48:20,920 --> 00:48:22,920 ORGANIZERS SO THEY CAN BRING IN 1193 00:48:22,920 --> 00:48:25,480 THE UNIQUE PERSPECTIVES. 1194 00:48:25,480 --> 00:48:31,440 WE HAVE ALSO PROVIDED CONSULTS 1195 00:48:31,440 --> 00:48:34,040 TO CEAL TEAMS. 1196 00:48:34,040 --> 00:48:38,800 THE TEXAS CEAL TEAM WANTED TO 1197 00:48:38,800 --> 00:48:41,080 CONSIDER ALTERNATE PAYMENT 1198 00:48:41,080 --> 00:48:41,480 METHODS. 1199 00:48:41,480 --> 00:48:46,120 7 -- AND THE CEACR TEAM MADE A 1200 00:48:46,120 --> 00:48:48,240 FEW RECOMMENDATIONS WHICH THEY 1201 00:48:48,240 --> 00:48:51,080 WERE ABLE TO USE RIGHT AWAY. 1202 00:48:51,080 --> 00:48:56,120 CREATE AN OMBUDSMAN POSITION. 1203 00:48:56,120 --> 00:48:58,840 AND THEY WERE ALSO ABLE TO 1204 00:48:58,840 --> 00:49:01,520 DEVELOP AN ESCROW FUND SO THAT 1205 00:49:01,520 --> 00:49:02,960 PAYMENTS TO COMMUNITY PARTNERS 1206 00:49:02,960 --> 00:49:05,840 CAN HAPPEN IN A QUICK AND 1207 00:49:05,840 --> 00:49:07,000 APPROPRIATE AND RESPECTFUL 1208 00:49:07,000 --> 00:49:09,800 MANNER. 1209 00:49:09,800 --> 00:49:12,320 SO I JUST WANT TO LEAVE YOU ALL 1210 00:49:12,320 --> 00:49:13,880 WITH A COUPLE OF OTHER THINGS. 1211 00:49:13,880 --> 00:49:18,640 I MENTIONED THAT CEACR NOW HAS A 1212 00:49:18,640 --> 00:49:19,360 DEDICATED WEB PAGE. 1213 00:49:19,360 --> 00:49:22,240 THE ADDRESS IS LISTED THERE BUT 1214 00:49:22,240 --> 00:49:28,000 REALLY IF YOU GOOGLE CEAL 1215 00:49:28,000 --> 00:49:31,320 CONSULTATIVE RESOURCE IT SHOULD 1216 00:49:31,320 --> 00:49:34,760 POP-UP AND YOU SHOULD GET ALL OF 1217 00:49:34,760 --> 00:49:37,440 THE INFORMATION IF YOU WANT TO 1218 00:49:37,440 --> 00:49:41,040 PUT IN A REQUEST FOR A CONSULT. 1219 00:49:41,040 --> 00:49:42,600 AND THEN ALSO CEACR HAS BEEN 1220 00:49:42,600 --> 00:49:45,200 PUTTING TOGETHER SPEAKER SERIES 1221 00:49:45,200 --> 00:49:48,680 THAT FOCUS ON COMMUNITY 1222 00:49:48,680 --> 00:49:50,760 ENGAGEMENT AND INCLUSIVE 1223 00:49:50,760 --> 00:49:52,720 PARTICIPATION TOPICS. 1224 00:49:52,720 --> 00:49:54,720 WE'VE DONE TWO SO FAR THAT 1225 00:49:54,720 --> 00:49:57,360 FOCUSED ON INCLUSIVE 1226 00:49:57,360 --> 00:50:01,440 PARTICIPATION AS WELL AS -- 1227 00:50:01,440 --> 00:50:03,760 OFFERING COMMUNITY PARTNER 1228 00:50:03,760 --> 00:50:04,720 COMPENSATION. 1229 00:50:04,720 --> 00:50:06,560 THOSE ARE AVAILABLE ON OUR WEB 1230 00:50:06,560 --> 00:50:06,960 PAGE. 1231 00:50:06,960 --> 00:50:08,640 WE RECORD THEM AND THEY ARE 1232 00:50:08,640 --> 00:50:10,360 AVAILABLE ON OUR WEB PAGE. 1233 00:50:10,360 --> 00:50:12,160 WE HAVE AND I ANOTHER ONE 1234 00:50:12,160 --> 00:50:13,960 HAPPENING ON THE 23rd OF 1235 00:50:13,960 --> 00:50:16,160 THIS MONTH WHICH WILL BE FOCUSED 1236 00:50:16,160 --> 00:50:18,360 ON LANGUAGE EQUITY. 1237 00:50:18,360 --> 00:50:20,440 I WOULD ENCOURAGE FOLKS TO LOOK 1238 00:50:20,440 --> 00:50:23,000 UP ON OUR WEB PAGE AND REGISTER. 1239 00:50:23,000 --> 00:50:25,760 AND HOPEFULLY AS CEACR DOES MORE 1240 00:50:25,760 --> 00:50:29,080 AND MORE OF THESE SPEAKER SERIES 1241 00:50:29,080 --> 00:50:32,040 WE WILL BUILD A VIRTUAL TOOLKIT 1242 00:50:32,040 --> 00:50:34,720 THAT RESEARCHERS CAN ACCESS IF 1243 00:50:34,720 --> 00:50:36,080 THEY ARE INTERESTED IN A 1244 00:50:36,080 --> 00:50:38,360 SPECIFIC TOPIC WITH REGARDS TO 1245 00:50:38,360 --> 00:50:39,840 INCLUSIVE PARTICIPATION AND 1246 00:50:39,840 --> 00:50:41,240 COMMUNITY ENGAGEMENT. 1247 00:50:41,240 --> 00:50:43,280 THEY CAN GO TO OUR WEB PAGE AND 1248 00:50:43,280 --> 00:50:48,000 LISTEN TO THAT DEDICATED SPEAKER 1249 00:50:48,000 --> 00:50:48,400 SERIES. 1250 00:50:48,400 --> 00:50:50,880 THANK YOU FOR INVITING ME HERE 1251 00:50:50,880 --> 00:50:53,440 TODAY AND I HOPE MY PRESENTATION 1252 00:50:53,440 --> 00:50:55,840 WAS CLEAR AND MY APOLOGIES TO 1253 00:50:55,840 --> 00:50:58,760 THE INTERPRETERS IF I WAS STILL 1254 00:50:58,760 --> 00:51:00,080 FAST IN MY SPEECH. 1255 00:51:00,080 --> 00:51:01,200 THANK YOU. 1256 00:51:01,200 --> 00:51:06,840 >> THANK YOU SO MUCH DR. ILIAS 1257 00:51:06,840 --> 00:51:07,680 FOR THAT PRESENTATION. 1258 00:51:07,680 --> 00:51:10,400 I THINK WE CAN GO -- WELL WE 1259 00:51:10,400 --> 00:51:12,520 STARTED A FEW MINUTES LATE SO 1260 00:51:12,520 --> 00:51:14,280 LET'S SEE IF WE HAVE A FEW 1261 00:51:14,280 --> 00:51:15,000 QUESTIONS. 1262 00:51:15,000 --> 00:51:19,840 OTHERWISE WE'LL TAKE A 10 MINUTE 1263 00:51:19,840 --> 00:51:21,520 BREAK POST Q&A. 1264 00:51:21,520 --> 00:51:23,960 IF YOU HAVE A QUESTION PLEASE 1265 00:51:23,960 --> 00:51:25,880 RAISE YOUR HAND. 1266 00:51:25,880 --> 00:51:28,000 UNMUTE AND PLEASE TURN ON YOUR 1267 00:51:28,000 --> 00:51:31,400 VIDEO OR YOU CAN ALSO PUT YOUR 1268 00:51:31,400 --> 00:51:34,400 QUESTIONS IN THE CHAT FOR THE 1269 00:51:34,400 --> 00:51:37,880 SPEAKERS OF THIS SESSION ONE. 1270 00:51:37,880 --> 00:51:43,440 MYSELF, MS. GARCIA AND 1271 00:51:43,440 --> 00:51:44,520 DR. ILIAS. 1272 00:51:44,520 --> 00:51:46,360 DR. NATARAJAN HAD TO LEAVE FOR 1273 00:51:46,360 --> 00:51:51,080 ANOTHER MEETING. 1274 00:51:51,080 --> 00:51:56,800 SO DR. ILIAS HAD A QUESTION. 1275 00:51:56,800 --> 00:51:59,680 THANK YOU FOR THIS 101 ON THIS 1276 00:51:59,680 --> 00:52:00,520 RESOURCE. 1277 00:52:00,520 --> 00:52:04,480 IS IT AVAILABLE FOR NIH PROGRAMS 1278 00:52:04,480 --> 00:52:05,240 AS WELL? 1279 00:52:05,240 --> 00:52:07,280 OR IS IT ONLY FOR RESEARCH 1280 00:52:07,280 --> 00:52:09,440 COMMUNITY OUTSIDE OF NIH? 1281 00:52:09,440 --> 00:52:13,040 >> THAT IS A GREAT QUESTION. 1282 00:52:13,040 --> 00:52:14,920 THIS RESOURCE IS AVAILABLE TO 1283 00:52:14,920 --> 00:52:17,120 ONLY NIH FUNDED RESEARCHERS. 1284 00:52:17,120 --> 00:52:21,400 SO USUALLY THAT ENTAILS ACADEMIC 1285 00:52:21,400 --> 00:52:23,520 INSTITUTIONS, HOWEVER WE 1286 00:52:23,520 --> 00:52:25,280 ENCOURAGE ACADEMIC INSTITUTIONS 1287 00:52:25,280 --> 00:52:26,720 TO HAVE COMMUNITY PARTNERS SO 1288 00:52:26,720 --> 00:52:28,840 THEY CAN COME IN THROUGH THEIR 1289 00:52:28,840 --> 00:52:29,960 ACADEMIC PARTNERS. 1290 00:52:29,960 --> 00:52:31,960 BUT THIS IS AVAILABLE TO ALL NIH 1291 00:52:31,960 --> 00:52:36,440 FUNDED RESEARCHERS. 1292 00:52:36,440 --> 00:52:40,560 >> THANK YOU AND I SEE THERE IS 1293 00:52:40,560 --> 00:52:44,720 A QUESTION FROM DOLORES HARDEN. 1294 00:52:44,720 --> 00:52:46,640 WHERE DID YOU MEET WITH NATIVE 1295 00:52:46,640 --> 00:52:48,080 AMERICAN FAMILIES? 1296 00:52:48,080 --> 00:52:50,560 >> THANK YOU, DELORES. 1297 00:52:50,560 --> 00:52:53,440 I ASSUME YOUR QUESTION RELATES 1298 00:52:53,440 --> 00:52:55,960 TO WHEN WE WERE TALKING ABOUT 1299 00:52:55,960 --> 00:52:58,120 ENGAGING THROUGH OUR CONSULTS 1300 00:52:58,120 --> 00:52:59,360 WITH NATIVE AMERICAN 1301 00:52:59,360 --> 00:53:00,160 POPULATIONS. 1302 00:53:00,160 --> 00:53:02,480 WHAT I MEANT TO SAY WAS THAT 1303 00:53:02,480 --> 00:53:04,600 WE'VE GOTTEN REQUESTS FROM 1304 00:53:04,600 --> 00:53:06,480 CLINICAL RESEARCHERS WHO WANT TO 1305 00:53:06,480 --> 00:53:08,760 IMPROVE THEIR COMMUNICATION WITH 1306 00:53:08,760 --> 00:53:10,800 OR ENGAGEMENT WITH NATIVE 1307 00:53:10,800 --> 00:53:13,640 AMERICAN POPULATIONS SO WE HAVE 1308 00:53:13,640 --> 00:53:17,480 BEEN ABLE TO ACCESS EXPERTS WHO 1309 00:53:17,480 --> 00:53:20,320 WORK WITHIN NATIVE AMERICAN 1310 00:53:20,320 --> 00:53:23,000 POPULATIONS WITHIN CEAL AND WHO 1311 00:53:23,000 --> 00:53:25,800 HAVE ACCESS TO THOSE COMMUNITIES 1312 00:53:25,800 --> 00:53:28,360 TO THOSE PATIENTS AND WHO CAN 1313 00:53:28,360 --> 00:53:30,960 BRING IN THOSE PERSPECTIVES TO 1314 00:53:30,960 --> 00:53:33,000 THE PANEL DISCUSSION AND SO THAT 1315 00:53:33,000 --> 00:53:35,280 WE'RE ABLE TO PROVIDE 1316 00:53:35,280 --> 00:53:36,800 RECOMMENDATIONS WITH REGARDS TO 1317 00:53:36,800 --> 00:53:39,720 COMMUNITY ENGAGEMENT THAT ARE 1318 00:53:39,720 --> 00:53:41,280 MORE TARGETED FROM THE 1319 00:53:41,280 --> 00:53:43,080 PERSPECTIVE OF THESE NATIVE 1320 00:53:43,080 --> 00:53:46,120 AMERICAN COMMUNITIES. 1321 00:53:46,120 --> 00:53:46,280 SEALE. 1322 00:53:53,840 --> 00:53:56,560 >> I DON'T SEE ANY RAISED HANDS. 1323 00:53:56,560 --> 00:53:58,200 WE WILL GO FOR A 10 MINUTE 1324 00:53:58,200 --> 00:54:00,000 BREAK. 1325 00:54:00,000 --> 00:54:04,880 AND WE WILL RETURN AT 1326 00:54:04,880 --> 00:54:09,320 1:10:00 P.M. EASTERN TIME. 1327 00:54:09,320 --> 00:54:21,280 >>WELCOME BACK, EVERYONE. 1328 00:54:21,280 --> 00:54:23,920 SO MY NAME IS ERIKA TARVER. 1329 00:54:23,920 --> 00:54:26,320 A SENIOR PROJECT MANAGER WITHIN 1330 00:54:26,320 --> 00:54:29,920 THE DIVISION OF NEURAL SCIENCE 1331 00:54:29,920 --> 00:54:31,560 AND I'M EXCITED TODAY TO 1332 00:54:31,560 --> 00:54:33,040 MODERATE THIS SESSION. 1333 00:54:33,040 --> 00:54:35,960 I'LL GIVE A BRIEF INTRODUCTION 1334 00:54:35,960 --> 00:54:37,800 AND BIO. 1335 00:54:37,800 --> 00:54:39,880 STARTING WITH THE FAMILIES AND 1336 00:54:39,880 --> 00:54:41,400 SELF-ADVOCATES. 1337 00:54:41,400 --> 00:54:47,040 WE HAVE JOINING US TODAY 1338 00:54:47,040 --> 00:54:48,040 MS. NORA BAHAMONDE. 1339 00:54:48,040 --> 00:54:50,200 7 AN EMPLOYEE WITH THE FEDERAL 1340 00:54:50,200 --> 00:54:50,840 GOVERNMENT. 1341 00:54:50,840 --> 00:54:52,400 THE PROUD MOTHER OF TWO. 1342 00:54:52,400 --> 00:54:56,240 HER SON 34 YEARS OLD AND HER 1343 00:54:56,240 --> 00:54:58,600 DRAY 16 YEARS OLD AND WAS 1344 00:54:58,600 --> 00:54:59,720 DIAGNOSED WITH DOWN SYNDROME A 1345 00:54:59,720 --> 00:55:03,840 FEW DAYS AFTER HER BIRTH. 1346 00:55:03,840 --> 00:55:05,840 NORA'S MISSION HAS BEEN TO HELP 1347 00:55:05,840 --> 00:55:07,920 CONNECT DIFFERENT DOWN SYNDROME 1348 00:55:07,920 --> 00:55:09,680 ORGANIZATIONS NATURALLY AND 1349 00:55:09,680 --> 00:55:11,800 INTERNATIONAL WITH THE SPANISH 1350 00:55:11,800 --> 00:55:12,960 SPEAKING COMMUNITY. 1351 00:55:12,960 --> 00:55:13,400 *. 1352 00:55:13,400 --> 00:55:16,840 SHE HAS HELPED TO ENSURE THAT 1353 00:55:16,840 --> 00:55:18,280 SERVICES ARE AVAILABLE FOR 1354 00:55:18,280 --> 00:55:19,760 HISPANIC FAMILIES AND CONTINUES 1355 00:55:19,760 --> 00:55:23,480 TO WORK WITH NONPROFIT 1356 00:55:23,480 --> 00:55:24,280 ORGANIZATIONS. 1357 00:55:24,280 --> 00:55:26,800 IF YOU DON'T MIND TURNING ON 1358 00:55:26,800 --> 00:55:29,200 YOUR CAMERA AND ALSO SO THAT WE 1359 00:55:29,200 --> 00:55:32,200 CAN SEE YOU JOIN THE PANELISTS. 1360 00:55:32,200 --> 00:55:41,520 OUR OTHER PANELISTS TODAY IS MS. 1361 00:55:41,520 --> 00:55:45,280 SHE IS AN ENTREPRENEUR AND RUNS 1362 00:55:45,280 --> 00:55:47,800 HER OWN ON-LINE BUSINESS. 1363 00:55:47,800 --> 00:55:50,840 SHE ENJOYS SINGING AND TRAVELING 1364 00:55:50,840 --> 00:55:54,080 AND IS PROUD TO BE A 1365 00:55:54,080 --> 00:55:55,440 SELF-ADVOCATE SPEAKER IN 1366 00:55:55,440 --> 00:55:58,080 ADDITION TO BEING A MODEL FOR 1367 00:55:58,080 --> 00:56:01,720 THE BE BEAUTIFUL BE YOURSELF 1368 00:56:01,720 --> 00:56:03,720 FASHION SHOW. 1369 00:56:03,720 --> 00:56:06,080 SHE HOPES TO INSPIRE OTHERS 1370 00:56:06,080 --> 00:56:07,720 SHOWING THAT INDIVIDUALS WITH 1371 00:56:07,720 --> 00:56:11,160 DOWN SYNDROME CAN DO. 1372 00:56:11,160 --> 00:56:15,320 OUR OTHER PANELISTS IS MS. KATE 1373 00:56:15,320 --> 00:56:16,560 DOUGHERTY. 1374 00:56:16,560 --> 00:56:18,400 THE CURRENT PRESIDENT OF THE 1375 00:56:18,400 --> 00:56:27,640 BOARD OF DIRECTORS -- SHE IS THE 1376 00:56:27,640 --> 00:56:32,360 PRESIDENT AND FOUNDER OF DOWN 1377 00:56:32,360 --> 00:56:36,640 COUNTRY OPERATING UNDER THE 1378 00:56:36,640 --> 00:56:38,120 FUNDAMENTAL PRINCIPLES THAT 1379 00:56:38,120 --> 00:56:39,720 EVERY CHILD IS A GIFT. 1380 00:56:39,720 --> 00:56:41,920 EVERY CHILD CAN LEARN AND EVERY 1381 00:56:41,920 --> 00:56:43,480 CHILD LEARNS DIFFERENTLY. 1382 00:56:43,480 --> 00:56:45,680 SHE IS A NATIONAL SPEAKER. 1383 00:56:45,680 --> 00:56:47,440 A CONSULTANT AND IS PASSIONATE 1384 00:56:47,440 --> 00:56:49,000 ABOUT TECHNOLOGY AND EDUCATION 1385 00:56:49,000 --> 00:56:51,600 AND POSSIBILITIES FOR #EVERY 1386 00:56:51,600 --> 00:56:52,800 CHILD. 1387 00:56:52,800 --> 00:56:55,640 ANOTHER PANELISTS IS MR. DOLORES 1388 00:56:55,640 --> 00:56:56,280 HARDEN. 1389 00:56:56,280 --> 00:56:59,600 AN EARLY CHILDHOOD DIRECTOR AT 1390 00:56:59,600 --> 00:57:02,160 THE NEW MEXICO PARENT'S REACHING 1391 00:57:02,160 --> 00:57:04,440 OUT PROGRAM AND A MEMBER OF THE 1392 00:57:04,440 --> 00:57:05,800 NAVAJO NATION ADVISORY COUNCIL 1393 00:57:05,800 --> 00:57:06,960 ON DISABILITIES. 1394 00:57:06,960 --> 00:57:09,280 SHE IS THE MOTHER OF FOUR 1395 00:57:09,280 --> 00:57:10,280 WONDERFUL CHILDREN. 1396 00:57:10,280 --> 00:57:12,440 THREE SONS AND ONE DAUGHTER AND 1397 00:57:12,440 --> 00:57:15,120 TWO OF HER SONS HAVE 1398 00:57:15,120 --> 00:57:17,240 DISABILITIES. 1399 00:57:17,240 --> 00:57:21,760 JUSTIN HAS CEREBRAL PALSY AND 1400 00:57:21,760 --> 00:57:24,080 SEAN WHO HAS DOWN SYNDROME IS 28 1401 00:57:24,080 --> 00:57:27,680 YEARS OLD. 1402 00:57:27,680 --> 00:57:29,600 ORGANIZING PARENT SUPPORT 1403 00:57:29,600 --> 00:57:30,480 GROUPS, CONFERENCES AND 1404 00:57:30,480 --> 00:57:31,800 WORKSHOPS. 1405 00:57:31,800 --> 00:57:34,040 SHE HAS COLLABORATED WITH 1406 00:57:34,040 --> 00:57:36,320 EDUCATORS, SERVICE PROVIDERS AND 1407 00:57:36,320 --> 00:57:38,120 NONPROFIT AGENCIES IN VARIOUS 1408 00:57:38,120 --> 00:57:39,880 COMMUNITIES. 1409 00:57:39,880 --> 00:57:42,640 WE'RE ALSO HAPPY TO WELCOME 1410 00:57:42,640 --> 00:57:44,080 MS. TAYLOR MURPHY. 1411 00:57:44,080 --> 00:57:46,120 AN ACTIVE HIGH SCHOOL STUDENT 1412 00:57:46,120 --> 00:57:49,160 AND A GLOBAL SELF-ADVOCATE 1413 00:57:49,160 --> 00:57:50,960 SPEAKER FROM ARKANSAS. 1414 00:57:50,960 --> 00:57:53,160 SHE SERVES ON STUDENT COUNCIL, 1415 00:57:53,160 --> 00:57:56,440 DRAMA CLUB AND FAMILY CAREER AND 1416 00:57:56,440 --> 00:57:58,320 COMMUNITY LEADERS OF AMERICA. 1417 00:57:58,320 --> 00:58:02,960 TAYLOR LIKES GIVING BACK TO HER 1418 00:58:02,960 --> 00:58:03,760 COMMUNITY WHICH INCLUDES 1419 00:58:03,760 --> 00:58:05,080 SPEAKING AS WELL AS BEING A 1420 00:58:05,080 --> 00:58:07,840 MODEL FOR THE BE BEAUTIFUL BE 1421 00:58:07,840 --> 00:58:10,680 YOURSELF FASHION SHOW. 1422 00:58:10,680 --> 00:58:13,360 SHE ENJOYS BAKING AND EDUCATING 1423 00:58:13,360 --> 00:58:14,760 CHILDREN WITH SPECIAL NEEDS. 1424 00:58:14,760 --> 00:58:18,720 SHE PLANS TO BE A VETERINARIAN'S 1425 00:58:18,720 --> 00:58:22,480 ASSISTANT. 1426 00:58:22,480 --> 00:58:30,640 WE HAVE MS. CHANTEL NEAL-HOWE. 1427 00:58:30,640 --> 00:58:33,600 AN ACTIVE MEMBER OF THE 1428 00:58:33,600 --> 00:58:35,200 AFRICAN-AMERICAN BLACK PEOPLE 1429 00:58:35,200 --> 00:58:37,200 WHO HAVE DOWN SYNDROME. 1430 00:58:37,200 --> 00:58:39,080 SHE GREW UP IN INDIANA AND 1431 00:58:39,080 --> 00:58:41,320 LEARNED EARLY ON THE IMPORTANCE 1432 00:58:41,320 --> 00:58:43,680 OF SUPPORTING ORGANIZATIONS AND 1433 00:58:43,680 --> 00:58:46,960 EFFORTS THAT CHARTER THEMSELVES 1434 00:58:46,960 --> 00:58:49,080 TO SERVE THE UNDERSERVED. 1435 00:58:49,080 --> 00:58:50,960 THEY ENGAGE FAMILIES AND 1436 00:58:50,960 --> 00:58:52,760 EDUCATORS AND CHURCH MINISTRIES 1437 00:58:52,760 --> 00:58:54,720 IN ESTABLISHING DISABILITY 1438 00:58:54,720 --> 00:58:56,600 INCLUSION PROGRAMS. 1439 00:58:56,600 --> 00:58:58,000 PROFESSIONALLY SHE IS A 1440 00:58:58,000 --> 00:59:00,400 FINANCIAL PLANNING AND ANALYSIS 1441 00:59:00,400 --> 00:59:02,560 CONSULTANT FOCUSING ON CORPORATE 1442 00:59:02,560 --> 00:59:04,400 FINANCE AND PLANNING AND PROCESS 1443 00:59:04,400 --> 00:59:05,000 IMPROVEMENT. 1444 00:59:05,000 --> 00:59:07,360 SHE RESIDES IN SPRING, TEXAS 1445 00:59:07,360 --> 00:59:11,040 WITH HER HUSBAND ZACHERY AND HER 1446 00:59:11,040 --> 00:59:12,400 DAUGHTER ZOE WHO HAS DOWN 1447 00:59:12,400 --> 00:59:13,080 SYNDROME. 1448 00:59:13,080 --> 00:59:18,680 ANOTHER PANELISTS TODAY IS MR 1449 00:59:18,680 --> 00:59:21,280 MR. CHIDANAND RAJGHATTA. 1450 00:59:21,280 --> 00:59:24,840 HE IS A FOREIGN EDITOR AND U.S. 1451 00:59:24,840 --> 00:59:26,320 CORRESPONDENT AT THE TIMES OF 1452 00:59:26,320 --> 00:59:26,720 INDIA. 1453 00:59:26,720 --> 00:59:29,400 HE HAS BEEN A WRITER AND 1454 00:59:29,400 --> 00:59:31,040 PROFESSIONAL JOURNALIST FOR 40 1455 00:59:31,040 --> 00:59:33,560 YEARS AND HAS TRAVELED 1456 00:59:33,560 --> 00:59:34,560 EXTENSIVELY REPORTING FROM 1457 00:59:34,560 --> 00:59:37,280 HOTSPOTS ACROSS THE WORLD 1458 00:59:37,280 --> 00:59:41,760 INCLUDING WAR ZONES AND PEACE 1459 00:59:41,760 --> 00:59:42,640 EFFORTS. 1460 00:59:42,640 --> 00:59:46,800 HE SPECIALIZES IN ISSUES RELATED 1461 00:59:46,800 --> 00:59:48,680 TO WHOLE SITUATION, MIGRATION, 1462 00:59:48,680 --> 00:59:52,120 TECHNOLOGY AND FOOD AND 1463 00:59:52,120 --> 01:00:00,080 AGRICULTURE, ECONOMIC TRENDS. 1464 01:00:00,080 --> 01:00:02,120 THEIR YOUNGEST SON WAS BORN WITH 1465 01:00:02,120 --> 01:00:05,520 DOWN SYNDROME IN 2018. 1466 01:00:05,520 --> 01:00:07,800 THEY ARE ACTIVE IN THE NETWORK 1467 01:00:07,800 --> 01:00:09,360 IN MONTGOMERY, MARYLAND. 1468 01:00:09,360 --> 01:00:12,720 NEXT UP WE HAVE MR. JOSE TORRES 1469 01:00:12,720 --> 01:00:14,680 RODRIGUEZ. 1470 01:00:14,680 --> 01:00:16,800 HE IS THE PRESIDENT AT THE PORE 1471 01:00:16,800 --> 01:00:18,840 DOWN SYNDROME FOUNDATION AND A 1472 01:00:18,840 --> 01:00:24,560 PARTNER AT THE CMA ARCHITECTS 1473 01:00:24,560 --> 01:00:30,680 AND ENGINEERS *. 1474 01:00:30,680 --> 01:00:34,600 MR. RODRIGUEZ GANNON ACTIVE ROLE 1475 01:00:34,600 --> 01:00:37,120 IN THE PUERTO RICO FOUNDATION IN 1476 01:00:37,120 --> 01:00:38,840 2004 WHEN HIS YOUNGEST DAUGHTER 1477 01:00:38,840 --> 01:00:40,840 WAS BORN WITH DOWN SYNDROME AND 1478 01:00:40,840 --> 01:00:42,720 STARTED RECEIVING THERAPIES AND 1479 01:00:42,720 --> 01:00:44,240 EDUCATIONAL SERVICES. 1480 01:00:44,240 --> 01:00:46,680 HE BECAME A MEMBER OF THE BOARD 1481 01:00:46,680 --> 01:00:49,880 OF DIRECTORS AND IN 2012 HE 1482 01:00:49,880 --> 01:00:55,640 JOINED THE COMMITTEE -- -- 1483 01:00:55,640 --> 01:00:57,760 PLAYING AN ACTIVE ROLE 1484 01:00:57,760 --> 01:00:58,960 COORDINATING FUND-RAISING 1485 01:00:58,960 --> 01:01:01,640 ACTIVITIES AND SERVING AS A 1486 01:01:01,640 --> 01:01:03,720 LIAISON BETWEEN THE FOUNDATION 1487 01:01:03,720 --> 01:01:06,240 AND CONTRIBUTORS. 1488 01:01:06,240 --> 01:01:08,280 HE BECAME PRESIDENT OF THE BOARD 1489 01:01:08,280 --> 01:01:12,360 OF DIRECTORS AND REINFORCES THE 1490 01:01:12,360 --> 01:01:14,120 EXHIBITING PROGRAMS AS WELL AS 1491 01:01:14,120 --> 01:01:16,120 SCHEDULING FUND-RAISING EARTH 1492 01:01:16,120 --> 01:01:18,480 AND PLAYING A ROLE IN THE 1493 01:01:18,480 --> 01:01:21,200 ADMINISTRATION OF PRD SF. 1494 01:01:21,200 --> 01:01:24,920 FROM OUR RESEARCH COMMUNITY WE 1495 01:01:24,920 --> 01:01:35,360 HAVE DR. JOAQUIN ESPINOZA. 1496 01:01:37,560 --> 01:01:40,160 HE DIRECTS A DIVERSE RESEARCH 1497 01:01:40,160 --> 01:01:41,880 PROGRAM WITH EMPHASIS ON DOWN 1498 01:01:41,880 --> 01:01:45,000 SYNDROME THAT IS SUPPORTED BY 1499 01:01:45,000 --> 01:01:46,960 THE NIH, THE NATIONAL SCIENCE 1500 01:01:46,960 --> 01:01:50,520 FOUNDATION AND GLOBAL. 1501 01:01:50,520 --> 01:01:55,240 HE DIRECTS THE HUMAN TRY ZONE 1502 01:01:55,240 --> 01:01:56,720 PROJECT, A STUDY OF THE 1503 01:01:56,720 --> 01:01:59,080 POPULATION WITH DOWN SYNDROME. 1504 01:01:59,080 --> 01:02:02,080 WHICH IS ENABLED THE DESIGN OF 1505 01:02:02,080 --> 01:02:04,000 CLINICAL TRIALS TO IMPROVE 1506 01:02:04,000 --> 01:02:05,920 HEALTH OUTCOMES IN DOWN 1507 01:02:05,920 --> 01:02:06,280 SYNDROME. 1508 01:02:06,280 --> 01:02:08,240 IN ADDITION HE CURRENTLY SERVES 1509 01:02:08,240 --> 01:02:09,440 AS THE LEADER OF THE 1510 01:02:09,440 --> 01:02:12,680 ADMINISTRATIVE AND OUTREACH CORE 1511 01:02:12,680 --> 01:02:14,920 OF THE NIH INCLUDE PROJECT DATA 1512 01:02:14,920 --> 01:02:15,800 COORDINATING CENTER WHICH IS A 1513 01:02:15,800 --> 01:02:19,360 NEW DATA RESOURCE THAT AIMS TO 1514 01:02:19,360 --> 01:02:21,680 ACCELERATE DISCOVERIES INTO THE 1515 01:02:21,680 --> 01:02:23,480 MECHANISMS UNDERLYING THE 1516 01:02:23,480 --> 01:02:26,320 INCREASED RISK OF CO-OCCURRING 1517 01:02:26,320 --> 01:02:28,160 MEDICAL CONDITIONS FOR PEOPLE 1518 01:02:28,160 --> 01:02:29,240 WITH DOWN SYNDROME. 1519 01:02:29,240 --> 01:02:32,240 OUR NEXT IS DR. ANDREW 1520 01:02:32,240 --> 01:02:32,960 McCORMICK. 1521 01:02:32,960 --> 01:02:35,320 AN ASSOCIATE PROFESSOR OF 1522 01:02:35,320 --> 01:02:37,480 PEDIATRICS. 1523 01:02:37,480 --> 01:02:39,520 HE WORKS WITHIN THE DOWN 1524 01:02:39,520 --> 01:02:41,200 SYNDROME CENTER OF WESTERN PA AT 1525 01:02:41,200 --> 01:02:42,800 THE UNIVERSITY OF PITTSBURGH 1526 01:02:42,800 --> 01:02:44,240 MEDICAL CENTER CHILDREN'S 1527 01:02:44,240 --> 01:02:46,200 HOSPITAL OF PITTSBURGH AS THE 1528 01:02:46,200 --> 01:02:46,840 TEAM DOCTOR. 1529 01:02:46,840 --> 01:02:48,600 HE IS THE DIRECTOR OF THE 1530 01:02:48,600 --> 01:02:50,600 HEALTHY TRANSITION PROGRAM. 1531 01:02:50,600 --> 01:02:53,760 A HOLISTIC AND LONGITUDINAL 1532 01:02:53,760 --> 01:02:56,720 APPROACH OF PREPARING TEENS AND 1533 01:02:56,720 --> 01:02:59,000 YOUNG ADULTS FOR ADULTHOOD. 1534 01:02:59,000 --> 01:03:02,640 HE IS A CORE TEACHING FACULTY AT 1535 01:03:02,640 --> 01:03:03,800 THE UNIVERSITY OF PITTSBURGH 1536 01:03:03,800 --> 01:03:14,120 SCHOOL OF MEDICINE. 1537 01:03:19,760 --> 01:03:22,200 WE ALSO HAVE DR. ESTHER SON WHO 1538 01:03:22,200 --> 01:03:24,080 IS JOINING US. 1539 01:03:24,080 --> 01:03:25,560 AN ASSOCIATE PROFESSOR AT THE 1540 01:03:25,560 --> 01:03:26,760 DEPARTMENT OF SOCIAL WORK. 1541 01:03:26,760 --> 01:03:30,160 AT THE COLLEGE OF STATON ISLAND 1542 01:03:30,160 --> 01:03:33,960 IN THE CITY UNIVERSITY OF NEW 1543 01:03:33,960 --> 01:03:35,160 YORK. 1544 01:03:35,160 --> 01:03:37,200 HER INTEREST IS THE ENHANCEMENT 1545 01:03:37,200 --> 01:03:38,840 OF THE PHYSICAL AND MENTAL 1546 01:03:38,840 --> 01:03:40,960 HEALTH AND EMOTIONAL WELL-BEING 1547 01:03:40,960 --> 01:03:46,240 OF CHILDREN AND ADULTS WITH 1548 01:03:46,240 --> 01:03:50,840 FAMILIES WITH DISABILITIES. 1549 01:03:50,840 --> 01:03:52,320 AND IN PARTICULAR SHE FOCUSED 1550 01:03:52,320 --> 01:03:55,080 OFF ACCESS TO CARE, SERVICE 1551 01:03:55,080 --> 01:03:57,520 UTILIZATION, QUALITY OF CARE 1552 01:03:57,520 --> 01:03:59,520 AMONG MINORITY CHILDREN WITH 1553 01:03:59,520 --> 01:04:01,360 AUTISM AND WOMEN WITH 1554 01:04:01,360 --> 01:04:02,960 INTELLECTUAL AND DEVELOPMENTAL 1555 01:04:02,960 --> 01:04:04,720 DISABILITIES AND VIOLENCE 1556 01:04:04,720 --> 01:04:06,160 AGAINST PEOPLE WITH 1557 01:04:06,160 --> 01:04:07,320 DISABILITIES. 1558 01:04:07,320 --> 01:04:09,760 HER WORK HAS BEEN SUPPORTED BY 1559 01:04:09,760 --> 01:04:10,720 THE RESEARCH FUND. 1560 01:04:10,720 --> 01:04:13,680 THE HEALTH RESOURCES AND 1561 01:04:13,680 --> 01:04:15,160 SERVICES ADMINISTRATION, THE 1562 01:04:15,160 --> 01:04:16,400 U.S. DEPARTMENT OF HEALTH AND 1563 01:04:16,400 --> 01:04:19,280 HUMAN SERVICES AND THE CITY 1564 01:04:19,280 --> 01:04:21,280 UNIVERSITY OF NEW YORK AMONG 1565 01:04:21,280 --> 01:04:23,880 OTHERS. 1566 01:04:23,880 --> 01:04:29,720 NEXT WE HAVE DR. NOEMI SPINAZZI. 1567 01:04:29,720 --> 01:04:32,360 AT THE UNIVERSITY OF CALIFORNIA 1568 01:04:32,360 --> 01:04:34,960 SAN FRANCISCO -- CHILDREN'S 1569 01:04:34,960 --> 01:04:36,040 HOSPITAL IN OAKLAND. 1570 01:04:36,040 --> 01:04:38,280 SHE HAS A SPECIAL INTEREST IN 1571 01:04:38,280 --> 01:04:40,520 CHILDREN WITH COMPLEX CARE NEEDS 1572 01:04:40,520 --> 01:04:42,400 AND DEVELOPMENTAL DISABILITIES. 1573 01:04:42,400 --> 01:04:44,680 AND SHE FOUNDED A SPECIALIZED 1574 01:04:44,680 --> 01:04:50,400 CLINIC SERVING PATIENTS. 1575 01:04:50,400 --> 01:04:59,840 DR. SPINAZZI WAS AWARDED THE 1576 01:04:59,840 --> 01:05:02,640 DIVERSITY AWARD IN TO 22. 1577 01:05:02,640 --> 01:05:04,160 HER WORK WITH CHILDREN AND 1578 01:05:04,160 --> 01:05:07,000 FAMILIES FROM ALL OVER THE WORLD 1579 01:05:07,000 --> 01:05:11,720 MOTIVATES HER TO BE ADVOCATE FOR 1580 01:05:11,720 --> 01:05:19,600 IMMIGRANT RIGHTS AND HEALTH. 1581 01:05:19,600 --> 01:05:30,200 AND * WE HAVE DR. IGNACIO TAPIA. 1582 01:05:41,200 --> 01:05:43,560 HIS MAIN RESEARCH INTEREST ARE 1583 01:05:43,560 --> 01:05:51,080 THE PATHOPHYSIOLOGY OF THE 1584 01:05:51,080 --> 01:05:53,840 OBSTRUCTIVE SLEEP APNEA AND THE 1585 01:05:53,840 --> 01:05:55,000 CONSEQUENCES FOR INDIVIDUALS 1586 01:05:55,000 --> 01:05:56,240 WITH DOWN SYNDROME. 1587 01:05:56,240 --> 01:05:58,360 HIS RESEARCH HAS BEEN FUNDED BY 1588 01:05:58,360 --> 01:05:59,640 THE AMERICAN HEART ASSOCIATION, 1589 01:05:59,640 --> 01:06:01,080 THE UNIVERSITY OF PENNSYLVANIA, 1590 01:06:01,080 --> 01:06:03,520 THE AMERICAN SLEEP MEDICINE 1591 01:06:03,520 --> 01:06:04,680 FOUNDATION AND THE NATIONAL 1592 01:06:04,680 --> 01:06:05,720 INSTITUTES OF HEALTH. 1593 01:06:05,720 --> 01:06:07,080 WE WELCOME YOU ALL. 1594 01:06:07,080 --> 01:06:09,160 IF YOU'RE ABLE TO TURN ON YOUR 1595 01:06:09,160 --> 01:06:11,840 VIDEOS THAT WOULD BE WONDERFUL. 1596 01:06:11,840 --> 01:06:13,960 AND IF WE CAN GO TO THE NEXT 1597 01:06:13,960 --> 01:06:19,680 SLIDE PLEASE ... THAT IS A 1598 01:06:19,680 --> 01:06:25,560 CORRECTION. 1599 01:06:25,560 --> 01:06:36,000 MS. NEAL-HOWE NOW LIVES IN 1600 01:06:36,280 --> 01:06:36,640 GEORGIA. 1601 01:06:36,640 --> 01:06:40,520 THIS IS OPEN TO ANYONE. 1602 01:06:40,520 --> 01:06:41,840 WOULD ANYONE LIKE TO SHARE WITH 1603 01:06:41,840 --> 01:06:43,840 US ANY POSITIVE EXPERIENCES THAT 1604 01:06:43,840 --> 01:06:45,760 THEY'VE HAD WHEN TAKING PART IN 1605 01:06:45,760 --> 01:06:47,960 RESEARCH STUDIES AND WE ASK THAT 1606 01:06:47,960 --> 01:06:51,600 YOU RAISE YOUR HAND OR FEEL FREE 1607 01:06:51,600 --> 01:06:55,520 TO UNMUTE AND BEGIN TALKING. 1608 01:06:55,520 --> 01:06:59,160 >> HI, THIS IS KATE DOUGHERTY. 1609 01:06:59,160 --> 01:07:02,240 I BELIEVE IN RURAL COMMUNITIES. 1610 01:07:02,240 --> 01:07:04,680 SO I LIVE IN WHAT WOULD BE 1611 01:07:04,680 --> 01:07:09,160 TERMED IN THE MIDDLE OF NOWHERE. 1612 01:07:09,160 --> 01:07:12,680 SO AND THAT IS ON THE BEST DAY. 1613 01:07:12,680 --> 01:07:14,640 ST. LOUIS IS ABOUT TWO AND A 1614 01:07:14,640 --> 01:07:16,560 HALF HOURS AWAY. 1615 01:07:16,560 --> 01:07:17,520 CHICAGO SIX. 1616 01:07:17,520 --> 01:07:20,880 KANSAS CITY THREE AND A HALF. 1617 01:07:20,880 --> 01:07:24,720 7 THANKS TO THE ANNUAL 1618 01:07:24,720 --> 01:07:27,520 CONVENTION PUT ON THE NBSC WE 1619 01:07:27,520 --> 01:07:30,440 FOUND OUT ABOUT THE TRIAL AND MY 1620 01:07:30,440 --> 01:07:32,960 SON WAS ABLE TO BE THE 21st 1621 01:07:32,960 --> 01:07:34,160 CHILD IN THE COUNTRY. 1622 01:07:34,160 --> 01:07:37,680 WE WOULD NOT HAVE HAD ACCESS TO 1623 01:07:37,680 --> 01:07:40,160 THIS INFORMATION ON ANY LEVEL 1624 01:07:40,160 --> 01:07:46,240 HAD IT NOT BEEN BEING BLESSED 1625 01:07:46,240 --> 01:07:49,800 AND ABLE TO TRAVEL AND ACCESS 1626 01:07:49,800 --> 01:07:52,200 INFORMATION ON THE STIMULATOR. 1627 01:07:52,200 --> 01:07:54,280 IT FOR ELLIOT WHO IS AN 1628 01:07:54,280 --> 01:07:55,760 INDIVIDUAL WITH DOWN SYNDROME 1629 01:07:55,760 --> 01:07:59,440 HAS BEEN LIFE CHANGING ON EVERY 1630 01:07:59,440 --> 01:08:01,000 LEVEL. 1631 01:08:01,000 --> 01:08:02,720 IT'S IMPROVED COGNITION, SPEECH 1632 01:08:02,720 --> 01:08:03,720 AND LANGUAGE. 1633 01:08:03,720 --> 01:08:06,680 IT'S IMPROVED BEHAVIOR, HIS 1634 01:08:06,680 --> 01:08:09,880 QUALITY OF LIFE AND QUITE 1635 01:08:09,880 --> 01:08:12,760 FRANKLY TO THE MAYO CLINIC HAS 1636 01:08:12,760 --> 01:08:14,560 PROLONGED AN OPEN HEART SURGERY 1637 01:08:14,560 --> 01:08:16,480 THAT WE THOUGHT HE WOULD HAVE TO 1638 01:08:16,480 --> 01:08:18,560 HAVE BEFORE HE EXITED HIGH 1639 01:08:18,560 --> 01:08:19,640 SCHOOL. 1640 01:08:19,640 --> 01:08:21,760 PARTICIPATING IN THIS RESEARCH 1641 01:08:21,760 --> 01:08:23,720 STUDY HAS BEEN MONUMENTAL BOTH 1642 01:08:23,720 --> 01:08:26,520 TO OUR FAMILY AND A POSITIVE 1643 01:08:26,520 --> 01:08:27,360 EXPERIENCE. 1644 01:08:27,360 --> 01:08:31,120 HOWEVER U JUST SO EVERYONE KNOWS 1645 01:08:31,120 --> 01:08:33,800 * THERE IS ABSOLUTELY AN INGROWN 1646 01:08:33,800 --> 01:08:36,040 FEAR OF HOW ANY INFORMATION 1647 01:08:36,040 --> 01:08:40,520 GAINED OR USED WILL BE USED AND 1648 01:08:40,520 --> 01:08:41,720 GATHERED. 1649 01:08:41,720 --> 01:08:45,040 SO I TRY AND TELL AS MANY PEOPLE 1650 01:08:45,040 --> 01:08:48,040 AS SHAUNTEL COULD TELL YOU ABOUT 1651 01:08:48,040 --> 01:08:50,880 THE BENEFITS OF PARTICIPATING IN 1652 01:08:50,880 --> 01:08:52,600 RESEARCH STUDIES FOR BOTH 1653 01:08:52,600 --> 01:08:55,320 QUALITY OF LIFE AND JUST QUITE 1654 01:08:55,320 --> 01:08:57,480 FRANKLY FOR THE INFORMATION 1655 01:08:57,480 --> 01:09:00,760 GATHERING PURPOSES BUT I 1656 01:09:00,760 --> 01:09:02,680 UNDERSTAND PEOPLE ARE EXTREMELY 1657 01:09:02,680 --> 01:09:04,720 PROTECTIVE OF THEIR ADULTS AND 1658 01:09:04,720 --> 01:09:07,000 CHILDREN WITH DOWN SYNDROME. 1659 01:09:07,000 --> 01:09:08,680 HOWEVER, WHEN YOU HAVE DIFFERENT 1660 01:09:08,680 --> 01:09:13,320 RESEARCH STUDIES THAT ARE TRULY 1661 01:09:13,320 --> 01:09:16,320 VETTED AND ARE POTENTIALLY LIFE 1662 01:09:16,320 --> 01:09:18,080 CHANGING BOTH FROM AN ABILITY TO 1663 01:09:18,080 --> 01:09:20,080 GATHER MORE INFORMATION FOR 1664 01:09:20,080 --> 01:09:21,760 PEOPLE IT IS TRULY A BEAUTIFUL 1665 01:09:21,760 --> 01:09:23,640 THING SO, THAT IS MY POSITIVE 1666 01:09:23,640 --> 01:09:27,520 EXPERIENCE FROM THE STICKS WITH 1667 01:09:27,520 --> 01:09:28,640 PARTICIPATING IN A RESEARCH 1668 01:09:28,640 --> 01:09:29,680 STUDY. 1669 01:09:29,680 --> 01:09:31,920 >> THANK YOU SO MUCH, 1670 01:09:31,920 --> 01:09:32,560 MS. DOUGHERTY. 1671 01:09:32,560 --> 01:09:34,160 ARE THERE OTHERS? 1672 01:09:34,160 --> 01:09:36,560 AND AS YOU UNMUTE YOURSELVES TO 1673 01:09:36,560 --> 01:09:38,840 SPEAK OR RAISE YOUR HAND WE ASK 1674 01:09:38,840 --> 01:09:41,440 THAT YOU TAKE INTO CONSIDERATION 1675 01:09:41,440 --> 01:09:43,800 OUR INTERPRETERS SO AS YOU'RE 1676 01:09:43,800 --> 01:09:46,320 SPEAKING WITH YOUR CADENCE 1677 01:09:46,320 --> 01:09:50,520 PLEASE SLOW DOWN A LITTLE BIT. 1678 01:09:50,520 --> 01:09:54,640 BUT YOURS WAS GREAT. 1679 01:09:54,640 --> 01:09:58,960 YOU WERE FINE. 1680 01:09:58,960 --> 01:10:00,920 ARE THERE OTHERS? 1681 01:10:00,920 --> 01:10:08,160 >> YEAH. 1682 01:10:08,160 --> 01:10:10,480 THEY'VE RAISED THEIR HANDS. 1683 01:10:10,480 --> 01:10:11,880 I CAN'T SEE THAT. 1684 01:10:11,880 --> 01:10:17,360 THANK YOU SO MUCH. 1685 01:10:17,360 --> 01:10:21,760 UNMUTE YOURSELF. 1686 01:10:21,760 --> 01:10:29,600 >> HI. 1687 01:10:29,600 --> 01:10:31,400 >> WE NEED TO UNMUTE YOU. 1688 01:10:31,400 --> 01:10:41,640 JUST A SECOND. 1689 01:10:42,400 --> 01:10:45,200 GIVE US A SECOND TO SEE IF WE 1690 01:10:45,200 --> 01:10:55,440 CAN UNMUTE. 1691 01:10:55,840 --> 01:11:02,280 [ SPEAKING SPANISH ] 1692 01:11:02,280 --> 01:11:02,560 >> GREAT. 1693 01:11:02,560 --> 01:11:05,320 THANK YOU SO MUCH. 1694 01:11:05,320 --> 01:11:05,720 PLEASE YADIRA. 1695 01:11:05,720 --> 01:11:07,440 WOULD YOU LIKE TO SHARE WITH US 1696 01:11:07,440 --> 01:11:08,680 YOUR POSITIVE EXPERIENCE THAT 1697 01:11:08,680 --> 01:11:10,680 YOU'VE HAD WITH TAKING PART IN A 1698 01:11:10,680 --> 01:11:11,920 RESEARCH STUDY? 1699 01:11:11,920 --> 01:11:14,760 >> YES. 1700 01:11:14,760 --> 01:11:19,000 OKAY. 1701 01:11:19,000 --> 01:11:26,600 I HAVE BEEN A PART OF THE HUMAN 1702 01:11:26,600 --> 01:11:37,080 -- -- HAD TO WORK WITH PEOPLE 1703 01:11:38,160 --> 01:11:42,400 WITH DOWN SYNDROME AND MAKE ME 1704 01:11:42,400 --> 01:11:43,840 FEEL WELCOME. 1705 01:11:43,840 --> 01:11:44,960 >> THAT IS PERFECT. 1706 01:11:44,960 --> 01:11:47,520 THANK YOU SO MUCH FOR SHARING 1707 01:11:47,520 --> 01:11:50,880 ABOUT YOUR EXPERIENCE. 1708 01:11:50,880 --> 01:11:52,800 IT REALLY MAKES A DIFFERENCE 1709 01:11:52,800 --> 01:11:54,440 WHEN YOU HAVE STAFF THAT KNOW 1710 01:11:54,440 --> 01:11:56,400 HOW TO WORK WITH INDIVIDUALS 1711 01:11:56,400 --> 01:11:57,920 WITH DOWN SYNDROME AS WELL AS 1712 01:11:57,920 --> 01:11:59,440 MAKING YOU FEEL WELCOME. 1713 01:11:59,440 --> 01:12:01,720 THANK YOU SO MUCH. 1714 01:12:01,720 --> 01:12:12,080 MS. DOLORES HARDEN. 1715 01:12:16,760 --> 01:12:19,760 I THINK SHE MAY HAVE LOWERED THE 1716 01:12:19,760 --> 01:12:20,800 HAND. 1717 01:12:20,800 --> 01:12:23,040 MS. TAYLOR MURPHY, WOULD YOU 1718 01:12:23,040 --> 01:12:25,040 LIKE TO SHARE YOUR EXPERIENCE? 1719 01:12:25,040 --> 01:12:28,040 >> MY FAMILY PARTICIPATED IN 1720 01:12:28,040 --> 01:12:31,680 FOCUS GROUP FOR THE GLOBAL ADULT 1721 01:12:31,680 --> 01:12:33,720 GATHERING. 1722 01:12:33,720 --> 01:12:38,160 IT WAS -- WE COULD COMPLETE IT 1723 01:12:38,160 --> 01:12:39,520 IN OUR OWN TIME. 1724 01:12:39,520 --> 01:12:40,720 >> THAT IS WONDERFUL. 1725 01:12:40,720 --> 01:12:42,200 THANK YOU SO MUCH. 1726 01:12:42,200 --> 01:12:43,680 THERE IS SOMETHING TO BE SAID 1727 01:12:43,680 --> 01:12:45,600 ABOUT HAVING YOUR OWN TIME AND 1728 01:12:45,600 --> 01:12:47,920 THE PACE IN WHICH TO SUBMIT THAT 1729 01:12:47,920 --> 01:12:51,280 WORKS WELL FOR YOU. 1730 01:12:51,280 --> 01:12:56,000 >> EXCUSE ME -- ERIKA, DOLORES 1731 01:12:56,000 --> 01:12:58,360 MAY HAVE HAD AN ISSUE WITH HER 1732 01:12:58,360 --> 01:12:59,880 AUDIO IF YOU WOULD LIKE TO CALL 1733 01:12:59,880 --> 01:13:00,960 ON HER AGAIN. 1734 01:13:00,960 --> 01:13:02,800 SHE WAS MUTED 1735 01:13:02,800 --> 01:13:05,760 >> ABSOLUTELY. 1736 01:13:05,760 --> 01:13:06,840 MS. HARDEN WOULD YOU LIKE TO 1737 01:13:06,840 --> 01:13:11,440 SHARE YOUR EXPERIENCE? 1738 01:13:11,440 --> 01:13:14,800 DOLORES. 1739 01:13:14,800 --> 01:13:16,640 >> WE'LL COME BACK TO HER, 1740 01:13:16,640 --> 01:13:17,480 ERIKA. 1741 01:13:17,480 --> 01:13:22,040 >> NOT A PROBLEM. 1742 01:13:22,040 --> 01:13:25,000 >> THANK YOU. 1743 01:13:25,000 --> 01:13:26,520 THANK YOU ALL AGAIN. 1744 01:13:26,520 --> 01:13:27,280 GOOD AFTERNOON. 1745 01:13:27,280 --> 01:13:29,960 I WAS HAPPY TO SEE THE RECAP 1746 01:13:29,960 --> 01:13:33,520 FROM THE EARLIER LISTENING 1747 01:13:33,520 --> 01:13:36,680 SESSIONS AND EVERYTHING THAT WAS 1748 01:13:36,680 --> 01:13:38,560 LEARNED SO THANKS FOR SHARING 1749 01:13:38,560 --> 01:13:39,760 THOSE EARLIER. 1750 01:13:39,760 --> 01:13:42,440 AND TO KATE'S POINT RURAL AND 1751 01:13:42,440 --> 01:13:44,320 THEN JUST ALL OF OUR COMMUNITIES 1752 01:13:44,320 --> 01:13:46,680 FOR THOSE OF US WHO ARE THERE. 1753 01:13:46,680 --> 01:13:49,760 WE HAVE REHASHED A LOT SOME OF 1754 01:13:49,760 --> 01:13:52,800 THE CHALLENGES AND BARRIERS FOR 1755 01:13:52,800 --> 01:13:53,400 THE AFRICAN-AMERICAN COMMUNITY 1756 01:13:53,400 --> 01:13:58,040 AND SOME OF THE WORD CHARTS OR 1757 01:13:58,040 --> 01:14:03,520 PUZZLES THAT WE SAW HIT HEAD ON. 1758 01:14:03,520 --> 01:14:06,640 I THINK ME IT'S GETTING INTO THE 1759 01:14:06,640 --> 01:14:07,840 COMMUNITIES. 1760 01:14:07,840 --> 01:14:09,600 WE KNOW ABOUT ACCESS AND TIME 1761 01:14:09,600 --> 01:14:11,080 BUT GETTING INTO THE COMMUNITIES 1762 01:14:11,080 --> 01:14:15,840 AND WORKING WITH THOSE WHO ARE 1763 01:14:15,840 --> 01:14:17,640 ALREADY TRUSTED I WAS HAPPY TO 1764 01:14:17,640 --> 01:14:20,600 SEE THAT AND I THINK WE CAN MAKE 1765 01:14:20,600 --> 01:14:22,200 HUGE LEAPS AND BOUNDS IF WE 1766 01:14:22,200 --> 01:14:23,920 START TO BUILD UPON THAT. 1767 01:14:23,920 --> 01:14:26,560 AND BUILD THOSE RELATIONSHIPS. 1768 01:14:26,560 --> 01:14:29,240 WITHIN THE COMMUNITY AND FOR MY 1769 01:14:29,240 --> 01:14:31,560 DAUGHTER ZOE WHO'S 16 AND A 1770 01:14:31,560 --> 01:14:33,760 WILLING PARTICIPANT IN RESEARCH 1771 01:14:33,760 --> 01:14:41,400 SHE AS WELL HAS DONE -- A COUPLE 1772 01:14:41,400 --> 01:14:45,840 IN THE HUMAN TR ICU M * PROJECT. 1773 01:14:45,840 --> 01:14:49,240 SHE IS WILLING TO GIVE BLOOD OR 1774 01:14:49,240 --> 01:14:50,360 WHATEVER SAMPLES. 1775 01:14:50,360 --> 01:14:52,400 AND THE THING THAT WORKS FOR HER 1776 01:14:52,400 --> 01:14:53,920 IS THE FACT THAT THE INDIVIDUALS 1777 01:14:53,920 --> 01:14:55,840 WHO ARE RUNNING THE STUDIES SO 1778 01:14:55,840 --> 01:14:58,280 WHO ARE TOUCHING HER AND POKING 1779 01:14:58,280 --> 01:15:00,720 AT HER AND PRODDING THEY TALK TO 1780 01:15:00,720 --> 01:15:01,320 HER. 1781 01:15:01,320 --> 01:15:03,120 THEY GET DOWN AT HER LEVEL AND 1782 01:15:03,120 --> 01:15:03,880 TALK TO HER. 1783 01:15:03,880 --> 01:15:06,400 THEY ARE NOT LOOKING AT ME MOM 1784 01:15:06,400 --> 01:15:10,240 OR HER DAD AND THIS LAST TIME AT 1785 01:15:10,240 --> 01:15:11,400 THE CONFERENCE SHE PREFERRED 1786 01:15:11,400 --> 01:15:13,600 THAT I SIT OUTSIDE THE ROOM SO I 1787 01:15:13,600 --> 01:15:16,000 WAS HAPPY TO SEE THAT AND THE 1788 01:15:16,000 --> 01:15:18,120 INDIVIDUALS THAT WERE RUNNING 1789 01:15:18,120 --> 01:15:19,440 THE PARTICULAR STUDY AND GOING 1790 01:15:19,440 --> 01:15:21,760 TO DO THE BLOOD DRAW AND TAKE 1791 01:15:21,760 --> 01:15:24,080 HER INFORMATION AGAIN THEY 1792 01:15:24,080 --> 01:15:25,640 DIRECTLY TALKED OR SPOKE TO HER. 1793 01:15:25,640 --> 01:15:28,080 SO I WOULD SAY KEEP THAT IN MIND 1794 01:15:28,080 --> 01:15:28,960 AS WELL. 1795 01:15:28,960 --> 01:15:30,680 >> THANK YOU SO MUCH. 1796 01:15:30,680 --> 01:15:33,560 I DON'T KNOW IF THERE WAS ANYONE 1797 01:15:33,560 --> 01:15:36,280 ELSE WHO HAD INPUT. 1798 01:15:36,280 --> 01:15:41,320 >> GOOD AFTERNOON. 1799 01:15:41,320 --> 01:15:45,560 MY NAME IS JOSE TORRES. 1800 01:15:45,560 --> 01:15:48,520 I WOULD LIKE TO SAY THANK YOU 1801 01:15:48,520 --> 01:15:49,840 FOR THE OPPORTUNITY TO 1802 01:15:49,840 --> 01:15:52,680 PARTICIPATE IN THIS PANEL. 1803 01:15:52,680 --> 01:15:54,160 PARTICIPATION OF RESEARCH HAS 1804 01:15:54,160 --> 01:16:01,920 BEEN LIMITED FOR ME. 1805 01:16:01,920 --> 01:16:04,360 THEY IN WHICH WE PARTICIPATE 1806 01:16:04,360 --> 01:16:07,680 THEY MAKE US WAIT ON HOW WE'RE 1807 01:16:07,680 --> 01:16:10,920 DEALING WITH OUR CHILD WITH THE 1808 01:16:10,920 --> 01:16:13,400 EDUCATION. 1809 01:16:13,400 --> 01:16:15,200 WE THINK SOMETIMES -- WE ARE 1810 01:16:15,200 --> 01:16:20,960 DOING A GOOD JOB OR WE'RE DOING 1811 01:16:20,960 --> 01:16:22,320 THE RIGHT THINGS FOR THE 1812 01:16:22,320 --> 01:16:26,440 EDUCATION OF OUR SON AND OUR 1813 01:16:26,440 --> 01:16:31,320 CHILD -- THE SHORT-TERM GOALS. 1814 01:16:31,320 --> 01:16:33,520 WE'RE DOING A GOOD PARTICIPATION 1815 01:16:33,520 --> 01:16:36,760 AND THE CORRECT THINGS AND ALSO 1816 01:16:36,760 --> 01:16:39,320 LONG-TERM, WE ARE VERY BUSY 1817 01:16:39,320 --> 01:16:43,600 DAILY THINGS -- TRYING TO GIVE 1818 01:16:43,600 --> 01:16:46,280 ALL THAT THEY NEED RIGHT NOW BUT 1819 01:16:46,280 --> 01:16:50,320 WE ARE NOT THINKING IN DETAIL 1820 01:16:50,320 --> 01:16:55,600 WHAT CAN WE DO? 1821 01:16:55,600 --> 01:16:58,080 PARTICIPATING IN RESEARCH 1822 01:16:58,080 --> 01:17:00,320 SOMETIMES -- YOU START TO THINK 1823 01:17:00,320 --> 01:17:02,360 ARE WE DOING THE RIGHT THINGS? 1824 01:17:02,360 --> 01:17:06,240 WHAT CAN WE IMPROVE? 1825 01:17:06,240 --> 01:17:08,880 BASICALLY THE EXPERIENCE IN 1826 01:17:08,880 --> 01:17:09,160 RESEARCH. 1827 01:17:09,160 --> 01:17:11,120 WE HAVE TO PROVIDE THE 1828 01:17:11,120 --> 01:17:15,440 OPPORTUNITY TO OTHER PERSONS -- 1829 01:17:15,440 --> 01:17:17,520 LOW-INCOME FAMILIES TO 1830 01:17:17,520 --> 01:17:22,600 PARTICIPATE IN PANELS AND SOME 1831 01:17:22,600 --> 01:17:23,040 OTHER RESEARCH. 1832 01:17:23,040 --> 01:17:24,160 THANK YOU. 1833 01:17:24,160 --> 01:17:24,840 >> THANK YOU. 1834 01:17:24,840 --> 01:17:29,160 THAT'S AN EXCELLENT POINT ABOUT 1835 01:17:29,160 --> 01:17:31,640 REPRESENTATION AND REACHING TO 1836 01:17:31,640 --> 01:17:37,120 ALL PARTS OF THE COMMUNITY. 1837 01:17:37,120 --> 01:17:39,040 CHIDANAND. 1838 01:17:39,040 --> 01:17:39,880 >> HI. 1839 01:17:39,880 --> 01:17:41,800 WE HAVE LIMITED EXPERIENCE. 1840 01:17:41,800 --> 01:17:44,640 WE WELCOME MORE OPPORTUNITIES. 1841 01:17:44,640 --> 01:17:49,600 I THINK IT WAS ONE OR TWO 1842 01:17:49,600 --> 01:17:53,560 OCCASIONS -- 1843 01:17:53,560 --> 01:17:55,840 >> I THINK WE GET CALLS FOR 1844 01:17:55,840 --> 01:17:58,160 RESEARCH STUDIES BUT NONE OF 1845 01:17:58,160 --> 01:18:00,160 THEM HAVE MATCHED OUR SON. 1846 01:18:00,160 --> 01:18:02,160 SO WE HAVE NOT HAD THE 1847 01:18:02,160 --> 01:18:05,000 OPPORTUNITY TO ENGAGE. 1848 01:18:05,000 --> 01:18:08,440 AND I THINK TO THE POINT OF 1849 01:18:08,440 --> 01:18:09,800 ENGAGEMENT IN PRESCHOOL 1850 01:18:09,800 --> 01:18:12,240 ACTIVITIES AND DEALING WITH 1851 01:18:12,240 --> 01:18:13,600 COUNTY LEVEL ASSESSMENT OF 1852 01:18:13,600 --> 01:18:18,160 SKILLS I FEEL THAT WE OFTEN TO 1853 01:18:18,160 --> 01:18:21,160 THAT EXTENT FEEL SOMETIMES LIKE 1854 01:18:21,160 --> 01:18:23,040 RESEARCH SUBJECTS. 1855 01:18:23,040 --> 01:18:28,240 IN THE SENSE THAT WE ARE -- OUR 1856 01:18:28,240 --> 01:18:29,960 SON'S KNOWLEDGE AND TEST SCORES 1857 01:18:29,960 --> 01:18:33,000 ARE BEING BENCHMARKED AGAINST 1858 01:18:33,000 --> 01:18:35,400 EARLY CHILDHOOD TEST SCORES THAT 1859 01:18:35,400 --> 01:18:37,360 ARE NOT DRIVEN TOWARDS SPECIAL 1860 01:18:37,360 --> 01:18:39,520 NEEDS CHILDREN OFTEN TIMES. 1861 01:18:39,520 --> 01:18:43,040 SO I FEEL IN THAT SENSE WE OFTEN 1862 01:18:43,040 --> 01:18:45,040 SOMETIMES FEEL LIKE RESEARCH 1863 01:18:45,040 --> 01:18:47,280 SUBJECTS IN TERMS OF WHAT THE 1864 01:18:47,280 --> 01:18:49,280 INPUT IS AND THE FEEDBACK THAT 1865 01:18:49,280 --> 01:18:51,160 WE GET. 1866 01:18:51,160 --> 01:18:52,560 I'LL STOP THERE. 1867 01:18:52,560 --> 01:18:53,080 >> NO. 1868 01:18:53,080 --> 01:18:54,840 I THINK ALL OF THAT IS VERY 1869 01:18:54,840 --> 01:18:55,120 IMPORTANT. 1870 01:18:55,120 --> 01:18:57,080 THANK YOU ALL FOR SHARING. 1871 01:18:57,080 --> 01:19:00,800 I APPRECIATE THAT. 1872 01:19:00,800 --> 01:19:02,880 MS. DOLORES HARDEN. 1873 01:19:02,880 --> 01:19:03,920 WE'LL TRY AGAIN. 1874 01:19:03,920 --> 01:19:06,000 CAN YOU HEAR US? 1875 01:19:06,000 --> 01:19:07,840 >> CAN YOU HEAR ME NOW? 1876 01:19:07,840 --> 01:19:09,080 >> WE CAN. 1877 01:19:09,080 --> 01:19:09,600 PERFECT. 1878 01:19:09,600 --> 01:19:11,760 >> OKAY. 1879 01:19:11,760 --> 01:19:12,120 FINALLY. 1880 01:19:12,120 --> 01:19:14,240 THANK YOU FOR ALLOWING ME TO 1881 01:19:14,240 --> 01:19:15,480 PARTICIPATE IN THIS PANEL 1882 01:19:15,480 --> 01:19:17,800 DISCUSSION. 1883 01:19:17,800 --> 01:19:19,800 IT'S VERY INTERESTING TO HEAR 1884 01:19:19,800 --> 01:19:22,680 ALL VIEWPOINTS AND AS A PARENT 1885 01:19:22,680 --> 01:19:24,640 AS WELL. 1886 01:19:24,640 --> 01:19:27,440 FOR ME AND AS A NAVAJO FAMILY IN 1887 01:19:27,440 --> 01:19:29,400 THE NORTHWEST REGION OF NEW 1888 01:19:29,400 --> 01:19:31,120 MEXICO IN THE FOUR CORNERS AREA 1889 01:19:31,120 --> 01:19:34,840 I HAVE NOT HEARD OF ANY FAMILIES 1890 01:19:34,840 --> 01:19:38,040 PARTICIPATING IN ANY RESEARCH 1891 01:19:38,040 --> 01:19:39,560 STUDIES OR OPPORTUNITIES THAT 1892 01:19:39,560 --> 01:19:42,640 THEY MIGHT BE ABLE TO 1893 01:19:42,640 --> 01:19:44,880 PARTICIPATE. 1894 01:19:44,880 --> 01:19:47,440 BUT THIS IS SOMETHING THAT I DO 1895 01:19:47,440 --> 01:19:51,640 WHEN I GET WITH FAMILIES I SHARE 1896 01:19:51,640 --> 01:19:54,680 UPDATED INFORMATION AND 1897 01:19:54,680 --> 01:19:57,080 POSSIBILITY OF SHARING WITH THE 1898 01:19:57,080 --> 01:19:59,760 FAMILIES WHETHER IT'S IN NEW 1899 01:19:59,760 --> 01:20:01,280 MEXICO, ARIZONA OR UTAH. 1900 01:20:01,280 --> 01:20:05,360 WITH THE FAMILIES THAT RESIDES 1901 01:20:05,360 --> 01:20:06,560 WITHIN NAVAJO NATION. 1902 01:20:06,560 --> 01:20:09,760 AS WELL AS I'M PART OF THE 1903 01:20:09,760 --> 01:20:11,200 NAVAJO NATION ADVISORY COUNCIL 1904 01:20:11,200 --> 01:20:13,360 ON DISABILITIES AND WE CERTAINLY 1905 01:20:13,360 --> 01:20:15,440 TALK ABOUT ALL OF THE 1906 01:20:15,440 --> 01:20:18,200 INFORMATION FOR FAMILIES THAT 1907 01:20:18,200 --> 01:20:19,800 HAVE FAMILY MEMBERS WITH 1908 01:20:19,800 --> 01:20:21,680 DISABILITIES THAT RESIDE WITHIN 1909 01:20:21,680 --> 01:20:24,240 NAVAJO NATION AS WELL AS OFF THE 1910 01:20:24,240 --> 01:20:25,680 RESERVATION BECAUSE THEN THERE 1911 01:20:25,680 --> 01:20:30,480 ARE BORDER TOWNS TO THOSE 1912 01:20:30,480 --> 01:20:32,960 RESERVATION OR FAMILIES AS WELL 1913 01:20:32,960 --> 01:20:35,600 AS THE PUEBLO FAMILIES IN NEW 1914 01:20:35,600 --> 01:20:35,960 MEXICO. 1915 01:20:35,960 --> 01:20:38,360 THERE ARE 19 PUEBLOS IN NEW 1916 01:20:38,360 --> 01:20:41,000 MEXICO THAT I DON'T THINK ANY OF 1917 01:20:41,000 --> 01:20:46,240 THOSE FAMILIES HAVE PARTICIPATED 1918 01:20:46,240 --> 01:20:48,360 IN ANY OPPORTUNITIES OR RESEARCH 1919 01:20:48,360 --> 01:20:50,280 STUDIES AS WELL. 1920 01:20:50,280 --> 01:20:51,920 JUST WANTED TO SHARE THAT 1921 01:20:51,920 --> 01:20:52,680 INFORMATION. 1922 01:20:52,680 --> 01:20:53,640 >> WE APPRECIATE THAT. 1923 01:20:53,640 --> 01:20:56,200 I THINK IT'S HELPFUL FOR US TO 1924 01:20:56,200 --> 01:20:58,160 UNDERSTAND THE POSITIVE 1925 01:20:58,160 --> 01:20:59,680 EXPERIENCES AS WELL AS THE 1926 01:20:59,680 --> 01:21:00,360 OPPORTUNITIES FOR CONTINUED 1927 01:21:00,360 --> 01:21:02,720 OUTREACH AND ENGAGEMENT. 1928 01:21:02,720 --> 01:21:06,640 SO ONE LAST COMMENT BY 1929 01:21:06,640 --> 01:21:07,920 MS. DOUGHERTY BEFORE WE MOVE TO 1930 01:21:07,920 --> 01:21:08,520 THE NEXT SLIDE 1931 01:21:08,520 --> 01:21:09,680 >> THANK YOU. 1932 01:21:09,680 --> 01:21:11,920 I DIDN'T, I CAN'T SEE THE 1933 01:21:11,920 --> 01:21:13,960 FAMILY'S NAME WHO SAID THE QUOTE 1934 01:21:13,960 --> 01:21:16,800 PARTICIPATING IN BENCHMARKS THAT 1935 01:21:16,800 --> 01:21:17,880 ARE NOT APPROPRIATE. 1936 01:21:17,880 --> 01:21:19,960 YOU TOUCHED MY HEART BECAUSE ONE 1937 01:21:19,960 --> 01:21:22,120 OF THE BIGGEST ISSUES THAT YOU 1938 01:21:22,120 --> 01:21:24,880 SEE IN RURAL AREAS IS THE 1939 01:21:24,880 --> 01:21:27,840 EDUCATION AND MEDICAL SILOS AND 1940 01:21:27,840 --> 01:21:30,440 I THINK YOU SEE THOSE CULTURALLY 1941 01:21:30,440 --> 01:21:32,680 AS WELL WHERE OUR KIDDOS ARE 1942 01:21:32,680 --> 01:21:35,440 EXTREMELY MEDICAL IN NATURE AND 1943 01:21:35,440 --> 01:21:40,160 YET THERE IS NOT -- A GOOD 1944 01:21:40,160 --> 01:21:41,880 PIPELINE FOR LACK OF A BETTER 1945 01:21:41,880 --> 01:21:43,720 WORD TO HELP EXPLAIN THEIR 1946 01:21:43,720 --> 01:21:46,000 MEDICAL DIAGNOSIS TO AN 1947 01:21:46,000 --> 01:21:46,600 EDUCATIONAL SYSTEM THAT IS 1948 01:21:46,600 --> 01:21:48,360 LOOKING AT THINGS FROM AN 1949 01:21:48,360 --> 01:21:50,920 ACADEMIC STANDPOINT THAT MANY 1950 01:21:50,920 --> 01:21:54,200 OFTEN TIMES IS NOT MEDICALLY 1951 01:21:54,200 --> 01:21:55,000 DEVELOPMENTALLY APPROPRIATE. 1952 01:21:55,000 --> 01:21:57,400 SO I WANT YOU TO KNOW THAT I 1953 01:21:57,400 --> 01:22:01,040 FEEL YOU EXPONENTIALLY ON THAT. 1954 01:22:01,040 --> 01:22:03,400 ALSO THESE ARE POSITIVE 1955 01:22:03,400 --> 01:22:04,720 EXPERIENCES WHICH MIGHT HAVE 1956 01:22:04,720 --> 01:22:05,760 BEEN POSITIVE IN THE RESEARCH 1957 01:22:05,760 --> 01:22:07,680 THAT I PARTICIPATED IN BUT I 1958 01:22:07,680 --> 01:22:12,520 WILL SAY THAT I AM EXTREMELY 1959 01:22:12,520 --> 01:22:14,000 PICKY ABOUT WHAT RESEARCH 1960 01:22:14,000 --> 01:22:17,160 OPPORTUNITIES I SHARE OUT 1961 01:22:17,160 --> 01:22:18,000 ORGANIZATIONALLY. 1962 01:22:18,000 --> 01:22:20,920 IF I DON'T KNOW, I PROBABLY GET 1963 01:22:20,920 --> 01:22:22,720 5-10 E-MAILS A WEEK FROM 1964 01:22:22,720 --> 01:22:23,960 DIFFERENT PEOPLE WANTING AND 1965 01:22:23,960 --> 01:22:26,800 THAT MAY BE A LOW BALL -- FROM 1966 01:22:26,800 --> 01:22:29,080 PEOPLE WANTING ME TO HAVE MY 1967 01:22:29,080 --> 01:22:30,520 ORGANIZATION SEND OUT RESEARCH 1968 01:22:30,520 --> 01:22:31,520 OPPORTUNITIES TO DIFFERENT 1969 01:22:31,520 --> 01:22:33,000 PEOPLE. 1970 01:22:33,000 --> 01:22:34,640 HOWEVER, THAT IS NOT SOMETHING 1971 01:22:34,640 --> 01:22:37,160 THAT I DO UNLESS I KNOW WHERE 1972 01:22:37,160 --> 01:22:40,440 IT'S COMING FROM. 1973 01:22:40,440 --> 01:22:42,520 IF JOAQUIN SEND SOMETHING IT ARE 1974 01:22:42,520 --> 01:22:44,880 OUT I WILL SEND IT ON. 1975 01:22:44,880 --> 01:22:47,080 IF IT COMES FROM THE NIH I WILL 1976 01:22:47,080 --> 01:22:48,280 SEND IT ON. 1977 01:22:48,280 --> 01:22:49,600 IF I'M NOT FAMILIAR WITH THE 1978 01:22:49,600 --> 01:22:50,960 RESEARCH OPPORTUNITY I WILL NOT 1979 01:22:50,960 --> 01:22:57,680 SEND IT ON BECAUSE IN THIS DAY 1980 01:22:57,680 --> 01:23:00,640 AND AGE IF YOU DON'T KNOW WHO 1981 01:23:00,640 --> 01:23:04,200 YOU'RE DEALING WITH I NEVER WANT 1982 01:23:04,200 --> 01:23:07,240 ANY INFORMATION TO BE USED 1983 01:23:07,240 --> 01:23:11,640 ERRONEOUSLY OR NOT PROPERLY 1984 01:23:11,640 --> 01:23:14,960 QUANTITATIVELY AND QUALITATIVELY 1985 01:23:14,960 --> 01:23:15,360 EXAMINED. 1986 01:23:15,360 --> 01:23:17,200 >> THANK YOU FOR SHARING THAT. 1987 01:23:17,200 --> 01:23:19,120 SO IN THE INTEREST OF TIME WE 1988 01:23:19,120 --> 01:23:25,600 WILL GO TO THE NEXT SLIDE IF WE 1989 01:23:25,600 --> 01:23:35,680 MAY. 1990 01:23:36,840 --> 01:23:41,280 NOW WE HAVE TO DO TWO SIDES OF 1991 01:23:41,280 --> 01:23:42,200 THE COIN. 1992 01:23:42,200 --> 01:23:44,720 IF WE COULD ASK OUR RESEARCHERS 1993 01:23:44,720 --> 01:23:46,680 IF THEY COULD SHARE WITH US WHAT 1994 01:23:46,680 --> 01:23:48,960 EXAMPLES HEARING THE POSITIVE 1995 01:23:48,960 --> 01:23:51,200 EXPERIENCES AS WELL AS THE 1996 01:23:51,200 --> 01:23:52,360 OPPORTUNITIES FOR FUTURE 1997 01:23:52,360 --> 01:23:55,200 DEVELOPMENT AND ENGAGEMENT IF 1998 01:23:55,200 --> 01:23:56,320 ANY OF THE RESEARCHERS COULD 1999 01:23:56,320 --> 01:24:02,560 SHARE WITH US THEIR EXAMPLE. 2000 01:24:02,560 --> 01:24:08,800 -- EXPERIENCES. 2001 01:24:08,800 --> 01:24:10,000 DR. McCORMICK. 2002 01:24:10,000 --> 01:24:14,000 >> I JUST WANTED TO START WITH I 2003 01:24:14,000 --> 01:24:16,960 THINK ONE OF BIG TAKE AWAYS THAT 2004 01:24:16,960 --> 01:24:19,440 I COME FROM IS KATE HIT ON THIS, 2005 01:24:19,440 --> 01:24:21,440 THE EFFECTIVE SILOING AND I 2006 01:24:21,440 --> 01:24:22,720 THINK THAT IS REALLY IMPORTANT 2007 01:24:22,720 --> 01:24:24,520 WHEN YOU THINK ABOUT ACADEMICS 2008 01:24:24,520 --> 01:24:27,280 AND HOW WE'RE SILOED JUST AWAY 2009 01:24:27,280 --> 01:24:28,280 FROM THE GREATER COMMUNITY. 2010 01:24:28,280 --> 01:24:30,800 THERE WAS A GREAT PAPER THAT WAS 2011 01:24:30,800 --> 01:24:32,720 WRITTEN BY ONE OF MY COLLEAGUES 2012 01:24:32,720 --> 01:24:35,080 AT PIT WHERE THEY FOCUSED ON 2013 01:24:35,080 --> 01:24:36,760 THIS CONSENT OF WORKING WITH 2014 01:24:36,760 --> 01:24:38,600 COMMUNITIES RATHER THAN ON 2015 01:24:38,600 --> 01:24:39,160 COMMUNITIES. 2016 01:24:39,160 --> 01:24:44,440 BECAUSE OFTEN AS RESEARCHERS ARE 2017 01:24:44,440 --> 01:24:46,080 DELIVERING THESE OPPORTUNITIES 2018 01:24:46,080 --> 01:24:47,360 TO COMMUNITIES WHERE THEY WANT 2019 01:24:47,360 --> 01:24:49,280 TO RECRUIT PEOPLE AND HAVE THEM 2020 01:24:49,280 --> 01:24:51,000 PART OF THEIR STUDY BUT THEY ARE 2021 01:24:51,000 --> 01:24:53,280 WORKING ON COMMUNITIES RATHER 2022 01:24:53,280 --> 01:24:55,280 THAN WORKING WITH COMMUNITIES. 2023 01:24:55,280 --> 01:24:57,760 I'M GOING TO TAKE 30 SECONDS TO 2024 01:24:57,760 --> 01:24:59,520 EXPLAIN A QUICK STORY THAT HELPS 2025 01:24:59,520 --> 01:25:00,680 UNDERSTAND THIS. 2026 01:25:00,680 --> 01:25:03,440 IN PITTSBURGH WE HAVE AN IN 2027 01:25:03,440 --> 01:25:05,880 EQUALITY REPORT THAT LOOKS AT 2028 01:25:05,880 --> 01:25:09,120 HOW HAS RACIAL DISPARITY AND 2029 01:25:09,120 --> 01:25:12,560 GENDER DISPARITY IMPACTED OUR 2030 01:25:12,560 --> 01:25:13,400 COMMUNITY. 2031 01:25:13,400 --> 01:25:16,200 PITTSBURGH WAS DOING AN HORRIFIC 2032 01:25:16,200 --> 01:25:17,600 JOB. 2033 01:25:17,600 --> 01:25:19,640 IT WAS LABELED AS ONE OF THE 2034 01:25:19,640 --> 01:25:22,200 MOST UNLIVABLE CITIES FOR BLACK 2035 01:25:22,200 --> 01:25:22,640 WOMEN. 2036 01:25:22,640 --> 01:25:25,720 FOR THE RESEARCHERS THEY WERE 2037 01:25:25,720 --> 01:25:29,480 ALL ACADEMICS. 2038 01:25:29,480 --> 01:25:32,880 AND THE OUT POUR FROM THAT 2039 01:25:32,880 --> 01:25:34,160 REPORT IS THIS IS NOTHING NEW. 2040 01:25:34,160 --> 01:25:35,480 THIS IS SOMETHING WE'VE BEEN 2041 01:25:35,480 --> 01:25:38,840 WORKING ON AND WE'RE VERY ANGRY 2042 01:25:38,840 --> 01:25:40,840 THAT YOU DEVELOPED THIS REPORT 2043 01:25:40,840 --> 01:25:42,280 WITHOUT ACTUALLY COMING TO US 2044 01:25:42,280 --> 01:25:43,600 AND GETTING FEEDBACK. 2045 01:25:43,600 --> 01:25:46,400 SO OUT OF THAT GREW THIS 2046 01:25:46,400 --> 01:25:47,240 RESEARCH CALLED THE PITTSBURGH 2047 01:25:47,240 --> 01:25:49,680 STUDY THAT HAS COME OUT IN WHICH 2048 01:25:49,680 --> 01:25:52,440 RESEARCHERS AND COMMUNITY 2049 01:25:52,440 --> 01:25:56,760 PARTNERS ARE FUNDED. 2050 01:25:56,760 --> 01:25:58,880 WE HAVE COMMUNITY SCIENTISTS AND 2051 01:25:58,880 --> 01:26:00,720 ACADEMICS WORKING ON THESE 2052 01:26:00,720 --> 01:26:02,760 DIFFERENT DOMAINS AND NOT SAYING 2053 01:26:02,760 --> 01:26:05,400 WE'RE COMING FROM AN ACADEMIC 2054 01:26:05,400 --> 01:26:06,720 PERSPECTIVE AND THEN APPLY IT 2055 01:26:06,720 --> 01:26:08,800 BUT HOW CAN WE TOGETHER THINK 2056 01:26:08,800 --> 01:26:12,600 ABOUT BOTH COMMUNITY CENTERED 2057 01:26:12,600 --> 01:26:15,160 FOCUSED ON WHAT THE COMMUNITY 2058 01:26:15,160 --> 01:26:17,080 NEEDS ARE AND WORKING WITH 2059 01:26:17,080 --> 01:26:17,560 RESOURCES. 2060 01:26:17,560 --> 01:26:20,320 WE NEED TO CHANGE THE PARADIGM. 2061 01:26:20,320 --> 01:26:22,440 FUNDING COMES TO ACADEMICS AND 2062 01:26:22,440 --> 01:26:24,200 RESEARCHERS AND WE'RE NOT 2063 01:26:24,200 --> 01:26:27,200 INCLUDING OUR COMMUNITY PARTNERS 2064 01:26:27,200 --> 01:26:28,520 IN THE PROCESS. 2065 01:26:28,520 --> 01:26:31,400 ONE WAY TO INCREASE RECRUITMENT 2066 01:26:31,400 --> 01:26:34,840 AND HAVING A MORE INCLUSIVE 2067 01:26:34,840 --> 01:26:36,960 PERSPECTIVE IS WE NEED TO FUND 2068 01:26:36,960 --> 01:26:38,920 COMMUNITY SCIENTISTS. 2069 01:26:38,920 --> 01:26:40,640 AND THAT WILL INCLUDE AN 2070 01:26:40,640 --> 01:26:42,520 INCREASE NOT ONLY IN RECRUITMENT 2071 01:26:42,520 --> 01:26:43,720 BUT THINKING ABOUT THE PROBLEMS 2072 01:26:43,720 --> 01:26:45,680 THAT ARE AFFECTING FROM A 2073 01:26:45,680 --> 01:26:46,480 COMMUNITY-BASED APPROACH. 2074 01:26:46,480 --> 01:26:50,480 AND SO THAT IS ONE OF THE 2075 01:26:50,480 --> 01:26:50,720 THINGS. 2076 01:26:50,720 --> 01:26:53,120 YOU GUYS TALKING ABOUT THE WAYS 2077 01:26:53,120 --> 01:26:55,080 IN WHICH WE NEED TO REFRAME HOW 2078 01:26:55,080 --> 01:26:56,720 WE FUND AND DO RESEARCH. 2079 01:26:56,720 --> 01:26:58,520 COMING FROM A DIFFERENT 2080 01:26:58,520 --> 01:26:59,000 PERSPECTIVE. 2081 01:26:59,000 --> 01:27:00,880 >> THANK YOU SO MUCH. 2082 01:27:00,880 --> 01:27:03,480 I APPRECIATE IT. 2083 01:27:03,480 --> 01:27:06,720 DR. ESPINOZA. 2084 01:27:06,720 --> 01:27:08,280 >> THANK YOU, ERIKA. 2085 01:27:08,280 --> 01:27:09,880 AN EXAMPLE THAT I WOULD LIKE TO 2086 01:27:09,880 --> 01:27:14,920 GIVE IS OUR COLLABORATION FOR US 2087 01:27:14,920 --> 01:27:18,480 TO BE ABLE TO COLLABORATE WITH A 2088 01:27:18,480 --> 01:27:29,200 LARGE ADD ADVOCACY IS INSTRUMEN. 2089 01:27:29,800 --> 01:27:34,360 WHAT WE WITH OBTAINED IS WE 2090 01:27:34,360 --> 01:27:37,640 GENERATE TRUST IN THE COMMUNITY. 2091 01:27:37,640 --> 01:27:39,880 THE FOUNDATION VOUCHES FOR US. 2092 01:27:39,880 --> 01:27:42,160 THE SCIENTIST VOUCHES FOR THE 2093 01:27:42,160 --> 01:27:43,840 STUDIES THAT WE'RE PERFORMING 2094 01:27:43,840 --> 01:27:47,720 AND THEY GET US IN FRONT OF THE 2095 01:27:47,720 --> 01:27:50,440 COMMUNITY. 2096 01:27:50,440 --> 01:27:53,360 THANKS TO THE FOUNDATION -- 2097 01:27:53,360 --> 01:27:55,160 ORGANIZATIONS GET TO TRAVEL TO 2098 01:27:55,160 --> 01:28:02,440 THE FAMILIES -- WE WERE IN NEW 2099 01:28:02,440 --> 01:28:03,920 ORLEANS EARLIER THIS YEAR AND I 2100 01:28:03,920 --> 01:28:11,440 WANT TO SAY TO "GUYS TO DOLORESN 2101 01:28:11,440 --> 01:28:14,520 MEET LATE NOVEMBER AT THE NAVAJO 2102 01:28:14,520 --> 01:28:15,200 FOUNDATION. 2103 01:28:15,200 --> 01:28:17,480 AND LASTLY COMMUNICATION. 2104 01:28:17,480 --> 01:28:20,160 WE THINK WE'RE SPEAKING CLEARLY 2105 01:28:20,160 --> 01:28:22,200 AND IT TURNS OUT THAT WE'RE NOT. 2106 01:28:22,200 --> 01:28:23,920 SO BY PLANNING WITH THE 2107 01:28:23,920 --> 01:28:26,200 ORGANIZATION WE GET A LOT OF 2108 01:28:26,200 --> 01:28:28,120 CANDID FEEDBACK ABOUT OUR 2109 01:28:28,120 --> 01:28:29,240 LANGUAGE AND PRINTED MATERIALS 2110 01:28:29,240 --> 01:28:31,600 AND POWER POINTS. 2111 01:28:31,600 --> 01:28:34,200 AND WE'RE EDUCATED AND MAKE SURE 2112 01:28:34,200 --> 01:28:36,600 THAT WE COMMUNICATE CLEARLY TO 2113 01:28:36,600 --> 01:28:37,960 THE FAMILIES. 2114 01:28:37,960 --> 01:28:40,320 SO FOR ALL OF THE RESEARCHERS 2115 01:28:40,320 --> 01:28:44,040 FINDING A PARTNER ADVOCACY 2116 01:28:44,040 --> 01:28:44,720 ORGANIZATION COULD BE VERY 2117 01:28:44,720 --> 01:28:46,240 BENEFICIAL. 2118 01:28:46,240 --> 01:28:46,880 >> EXCELLENT POINT. 2119 01:28:46,880 --> 01:28:50,520 THANK YOU AS WELL. 2120 01:28:50,520 --> 01:28:52,560 DR. SPINAZZI. 2121 01:28:52,560 --> 01:28:55,520 >> I WANTED TO SHARE WE HAVE I 2122 01:28:55,520 --> 01:28:59,360 WAS THE CO-PI ON A STUDY 2123 01:28:59,360 --> 01:29:01,640 RECENTLY CALLED CONFIRM THAT IS 2124 01:29:01,640 --> 01:29:03,560 MEANT TO DEVELOP ASSESSMENT TOOL 2125 01:29:03,560 --> 01:29:05,640 FOR SELF-MANAGEMENT SKILLS FOR 2126 01:29:05,640 --> 01:29:08,160 FAMILIES WITH COMPLEX CARE 2127 01:29:08,160 --> 01:29:08,640 NEEDS. 2128 01:29:08,640 --> 01:29:10,960 ONE OF THE THINGS IS THAT WE HAD 2129 01:29:10,960 --> 01:29:13,760 STRICT ENROLLMENT GOALS FOR 2130 01:29:13,760 --> 01:29:14,920 DIFFERENT POPULATIONS. 2131 01:29:14,920 --> 01:29:17,440 WE HAD A BIG PROBLEM. 2132 01:29:17,440 --> 01:29:19,960 WE HAD ENROLLED TOO MANY 2133 01:29:19,960 --> 01:29:23,920 AFRICAN-AMERICAN PATIENTS AND 2134 01:29:23,920 --> 01:29:26,560 SPANISH SPEAKING LATINO X 2135 01:29:26,560 --> 01:29:29,480 PATIENTS AND I FEEL PROUD OF 2136 01:29:29,480 --> 01:29:32,440 THIS PROBLEM THAT WE WERE 2137 01:29:32,440 --> 01:29:36,760 STRUGGLING TO ENROLL WHITE 2138 01:29:36,760 --> 01:29:38,400 PATIENTS. 2139 01:29:38,400 --> 01:29:41,480 WE KNEW THAT OUR FAMILIES OF 2140 01:29:41,480 --> 01:29:42,840 CHILDREN WITH COMPLEX HEALTH 2141 01:29:42,840 --> 01:29:45,160 CARE NEEDS ARE REALLY BUSY AND 2142 01:29:45,160 --> 01:29:47,680 THEY ARE REALLY BUSY WITH CARING 2143 01:29:47,680 --> 01:29:50,240 FOR THE KID AND THE SIBLINGS AND 2144 01:29:50,240 --> 01:29:51,720 MANAGING SCHOOL AND WORK AND 2145 01:29:51,720 --> 01:29:53,840 TRYING TO SURVIVE IN THE BAY 2146 01:29:53,840 --> 01:29:56,080 AREA THAT IS SO EXPENSIVE SO WE 2147 01:29:56,080 --> 01:29:57,920 MADE SURE THAT RECRUITMENT WOULD 2148 01:29:57,920 --> 01:29:59,480 HAPPEN AT THE TIME OF A VISIT 2149 01:29:59,480 --> 01:30:02,240 AND THAT RECRUITMENT WOULD 2150 01:30:02,240 --> 01:30:03,400 HAPPEN WHEN THEY WERE WAITING 2151 01:30:03,400 --> 01:30:05,440 FOR ME TO SHOW UP. 2152 01:30:05,440 --> 01:30:08,960 SO IF I WAS SEEING THEM THE CARE 2153 01:30:08,960 --> 01:30:11,520 COORDINATOR KNEW TO BUZZ AROUND 2154 01:30:11,520 --> 01:30:13,040 ME AND SEE IS THE PATIENT 2155 01:30:13,040 --> 01:30:14,040 WAITING? 2156 01:30:14,040 --> 01:30:17,160 I SHOULD USE THEIR TIMEWISELY. 2157 01:30:17,160 --> 01:30:20,680 OR ARE THEY WAITING FOR SHOTS OR 2158 01:30:20,680 --> 01:30:23,080 BLOOD WORK. 2159 01:30:23,080 --> 01:30:28,480 * IT WAS OBVIOU OBVIOUS. 2160 01:30:28,480 --> 01:30:30,440 WE SAW QUICKLY THAT THOSE 2161 01:30:30,440 --> 01:30:32,200 PATIENTS THAT WE COULD NOT 2162 01:30:32,200 --> 01:30:33,520 RECRUIT IN THE MOMENT WE WERE 2163 01:30:33,520 --> 01:30:36,520 HAVING A TOUGH TIME REACHING 2164 01:30:36,520 --> 01:30:38,040 AFTERWARDS. 2165 01:30:38,040 --> 01:30:39,600 SO KNOWING THESE THINGS AND 2166 01:30:39,600 --> 01:30:42,160 USING THEM AS LESSONS LEARNED. 2167 01:30:42,160 --> 01:30:44,840 ALSO IT'S VERY IMPORTANT TO NOTE 2168 01:30:44,840 --> 01:30:47,640 THAT OUR PATIENTS FEEL REALLY 2169 01:30:47,640 --> 01:30:50,240 CARED FOR. 2170 01:30:50,240 --> 01:30:51,800 AND SO, IT'S NOT SURPRISING FOR 2171 01:30:51,800 --> 01:30:54,440 THEM TO BE APPROACHED REGARDING 2172 01:30:54,440 --> 01:30:55,800 RESEARCH. 2173 01:30:55,800 --> 01:30:58,000 AND THAT THE SAME STAFF WHO ARE 2174 01:30:58,000 --> 01:31:00,240 OUR CLINICAL RESEARCH 2175 01:31:00,240 --> 01:31:02,440 COORDINATORS ARE ALSO SKILLED IN 2176 01:31:02,440 --> 01:31:04,680 USING COMMUNITY NAVIGATION 2177 01:31:04,680 --> 01:31:06,320 SERVICE CALLED FIND CONNECT. 2178 01:31:06,320 --> 01:31:09,680 SO IN THE SAME BREATH THEY ARE 2179 01:31:09,680 --> 01:31:12,120 ALSO DOING A NEEDS ASSESSMENT 2180 01:31:12,120 --> 01:31:13,760 AND CONNECTING THEM WITH 2181 01:31:13,760 --> 01:31:15,760 COMMUNITY RESOURCE THAT'S CAN 2182 01:31:15,760 --> 01:31:18,600 BENEFIT THEM AND SOLVE PROBLEMS. 2183 01:31:18,600 --> 01:31:22,400 I SAY IF WE WANT TO RECRUIT A 2184 01:31:22,400 --> 01:31:24,000 DIVERSE PATIENT POPULATION 2185 01:31:24,000 --> 01:31:27,080 REALLY, REALLY AND NOT JUST 2186 01:31:27,080 --> 01:31:31,440 LITHE NIDALLY BUT SOCIO 2187 01:31:31,440 --> 01:31:34,840 ECONOMICALLY DIVERSE. 2188 01:31:34,840 --> 01:31:36,960 BECAUSE THERE IS LOTS OF BIGGER 2189 01:31:36,960 --> 01:31:39,160 PROBLEMS LIKE A ROOF OVER YOUR 2190 01:31:39,160 --> 01:31:41,040 HEAD. 2191 01:31:41,040 --> 01:31:43,680 BUT IF WE REALLY HAVE THIS GOAL 2192 01:31:43,680 --> 01:31:47,760 THEN WE NEED TO SUPPORT THE 2193 01:31:47,760 --> 01:31:49,640 CLINICAL PROGRAMS THAT ARE 2194 01:31:49,640 --> 01:31:50,560 SERVING THESE PATIENTS. 2195 01:31:50,560 --> 01:31:53,280 THAT WE CANNOT HAVE THE SILO OF 2196 01:31:53,280 --> 01:31:54,480 RESEARCH BEING DISCONNECTED TO 2197 01:31:54,480 --> 01:31:56,280 THE WAY WE FUND DOWN SYNDROME 2198 01:31:56,280 --> 01:31:57,040 PROGRAMS. 2199 01:31:57,040 --> 01:32:01,040 BECAUSE THEN WE'RE GOING TO 2200 01:32:01,040 --> 01:32:02,160 ARTIFICIALLY SEPARATE THE 2201 01:32:02,160 --> 01:32:04,400 PROCESSES AND MISS OUT ON THIS 2202 01:32:04,400 --> 01:32:06,480 PROCESS OF TRUST BUILDING THAT 2203 01:32:06,480 --> 01:32:08,840 IS SO CRUCIAL FOR RECRUITING THE 2204 01:32:08,840 --> 01:32:10,840 DIVERSE COMMUNITY THAT WE'RE 2205 01:32:10,840 --> 01:32:11,640 AIMING FOR. 2206 01:32:11,640 --> 01:32:12,960 >> THANK YOU SO MUCH. 2207 01:32:12,960 --> 01:32:15,720 I APPRECIATE IT. 2208 01:32:15,720 --> 01:32:17,640 DR. TAPIA. 2209 01:32:17,640 --> 01:32:18,480 >> THANK YOU. 2210 01:32:18,480 --> 01:32:20,560 IN ORDER TO IMPROVE 2211 01:32:20,560 --> 01:32:24,280 ACCESSIBILITY AND EQUITY WE WERE 2212 01:32:24,280 --> 01:32:26,960 FORTUNATE TO HAVE A QUALITATIVE 2213 01:32:26,960 --> 01:32:30,200 STUDY WHERE WE PLAN FROM THE 2214 01:32:30,200 --> 01:32:32,040 GET-GO THE INTERVIEWS WOULD BE 2215 01:32:32,040 --> 01:32:33,520 VIA PHONE AT ANY TIME OF THE 2216 01:32:33,520 --> 01:32:34,160 DAY. 2217 01:32:34,160 --> 01:32:37,440 SO IT WOULD BE EASIER FOR THEM. 2218 01:32:37,440 --> 01:32:39,120 SO OUR RECRUITMENT WAS NOT 2219 01:32:39,120 --> 01:32:40,880 AFFECTED BY THE PANDEMIC AND 2220 01:32:40,880 --> 01:32:42,240 THEN WHEN WE MOVED TO THE 2221 01:32:42,240 --> 01:32:44,120 CLINICAL TRIAL PART OF THE STUDY 2222 01:32:44,120 --> 01:32:47,640 WE HAVE A DECREASED THE BURDEN 2223 01:32:47,640 --> 01:32:49,840 SUCH AS OFFERING DIFFERENT SITES 2224 01:32:49,840 --> 01:32:53,800 WHERE THEY NEED TO GO. 2225 01:32:53,800 --> 01:32:56,240 LIKE A TEST BY ONE OF THE 2226 01:32:56,240 --> 01:33:01,720 COORDINATORS AND THIS MAY SEEM Y 2227 01:33:01,720 --> 01:33:07,200 BUT THERE IS A LOT OF WORK. 2228 01:33:07,200 --> 01:33:09,000 AND ALSO THE RESEARCH 2229 01:33:09,000 --> 01:33:12,400 COORDINATOR NEEDS TO DRIVE ONE 2230 01:33:12,400 --> 01:33:15,440 HOUR TO BE WITH THE FAMILY THAT 2231 01:33:15,440 --> 01:33:17,440 CAN BE MAYBE 30 MINUTES FOR THE 2232 01:33:17,440 --> 01:33:19,760 FAMILY. 2233 01:33:19,760 --> 01:33:22,840 BUT THE FAMILIES APPRECIATE. 2234 01:33:22,840 --> 01:33:25,080 WE'VE MOVED ANY POSSIBLE 2235 01:33:25,080 --> 01:33:29,760 CLINICAL INTERACTION IF POSSIBLE 2236 01:33:29,760 --> 01:33:32,880 BY VIDEO VISITS AND WE ARE ABLE 2237 01:33:32,880 --> 01:33:33,960 TO AFTER HOURS. 2238 01:33:33,960 --> 01:33:35,280 >> SO BEING FLEXIBLE. 2239 01:33:35,280 --> 01:33:39,040 THAT'S AN AMAZING POINT. 2240 01:33:39,040 --> 01:33:40,040 >> FLEXIBLE AND MEETING THE 2241 01:33:40,040 --> 01:33:42,040 FAMILIES WHERE THEY ARE AT. 2242 01:33:42,040 --> 01:33:43,760 >> THANK YOU SO MUCH. 2243 01:33:43,760 --> 01:33:45,800 DR. SON. 2244 01:33:45,800 --> 01:33:48,080 >> HELLO. 2245 01:33:48,080 --> 01:33:50,680 -- -- ECCO FROM OTHER 2246 01:33:50,680 --> 01:33:52,080 RESEARCHERS BUT I WANT TO FOCUS 2247 01:33:52,080 --> 01:33:56,960 ON INCLUSION AND ACCESSIBILITY 2248 01:33:56,960 --> 01:33:57,840 IN MY RESEARCH. 2249 01:33:57,840 --> 01:34:01,280 SO WHEN I RECRUITED IMMIGRANTS, 2250 01:34:01,280 --> 01:34:03,560 ASIAN POPULATION BECAUSE I GO 2251 01:34:03,560 --> 01:34:06,360 THREE OUT OF FOUR IMMIGRANT 2252 01:34:06,360 --> 01:34:08,880 POPULATION -- ASIAN POPULATIONS 2253 01:34:08,880 --> 01:34:11,120 ARE IMMIGRANT SO FOR THEM ALSO 2254 01:34:11,120 --> 01:34:13,120 FOR THEM THE TRANSLATION 2255 01:34:13,120 --> 01:34:15,240 SERVICES ARE CRITICAL. 2256 01:34:15,240 --> 01:34:17,400 SO EVEN THOUGH THEY HAVE -- 2257 01:34:17,400 --> 01:34:19,680 INTERESTED IN PARTICIPATING IN 2258 01:34:19,680 --> 01:34:21,360 MY RESEARCH BUT IF THE 2259 01:34:21,360 --> 01:34:23,240 INTERVIEWS OR FOCUS GROUP 2260 01:34:23,240 --> 01:34:25,800 INTERVIEWS ARE NOT PROVIDED BY 2261 01:34:25,800 --> 01:34:29,520 THEIR OWN LANGUAGE WE CANNOT GET 2262 01:34:29,520 --> 01:34:31,160 THEIR VOICES. 2263 01:34:31,160 --> 01:34:33,200 SO ONE OF MY PROJECTS I WORKED 2264 01:34:33,200 --> 01:34:36,600 ON I WORKED WITH FIRST OF ALL I 2265 01:34:36,600 --> 01:34:38,520 WORKED WITH COMMUNITY PARTNERS 2266 01:34:38,520 --> 01:34:42,960 SO THEY CAN SPEAK MORE TYPICAL 2267 01:34:42,960 --> 01:34:44,480 LANGUAGES SO WE CAN EXPLAIN THE 2268 01:34:44,480 --> 01:34:46,160 PURPOSE OF OUR STUDY AND 2269 01:34:46,160 --> 01:34:53,200 RESEARCH METHODS AND LOD -- 2270 01:34:53,200 --> 01:34:54,080 LOGISTICS. 2271 01:34:54,080 --> 01:34:55,800 AND ALSO THEY WERE LOW-INCOME 2272 01:34:55,800 --> 01:34:57,280 FAMILIES. 2273 01:34:57,280 --> 01:35:00,880 SO WE WERE TRYING TO RECRUIT AND 2274 01:35:00,880 --> 01:35:03,160 INTERVIEW THOSE FAMILIES AT THE 2275 01:35:03,160 --> 01:35:04,560 AGENCY. 2276 01:35:04,560 --> 01:35:06,280 BECAUSE LIKE ONCE OR TWICE A 2277 01:35:06,280 --> 01:35:09,080 WEEK THEY COME INTO THE AGENCY. 2278 01:35:09,080 --> 01:35:12,000 SO THEY DON'T NEED TO TRAVEL OR 2279 01:35:12,000 --> 01:35:15,760 DON'T NEED TO MAKE ANOTHER TIME 2280 01:35:15,760 --> 01:35:18,200 TO DO INTERVIEWS AND WE PROVIDED 2281 01:35:18,200 --> 01:35:22,640 A STIPEND BUT THE CRITICAL THING 2282 01:35:22,640 --> 01:35:26,120 WAS WE HIRED BILINGUAL RESEARCH 2283 01:35:26,120 --> 01:35:32,520 ASSISTANT WHO HAS A SIMILAR -- 2284 01:35:32,520 --> 01:35:34,240 BACKGROUND LIKE OUR PARTICIPANTS 2285 01:35:34,240 --> 01:35:40,080 AND WE TRAINED THEM AND THEN WE 2286 01:35:40,080 --> 01:35:42,440 SENT THEM TO THOSE FAMILIES SO 2287 01:35:42,440 --> 01:35:43,400 THEY WERE MORE WILLING TO 2288 01:35:43,400 --> 01:35:45,280 PROVIDE THEIR STORIES TO THE 2289 01:35:45,280 --> 01:35:47,320 PEOPLE WHO LOOK SIMILAR WHO CAN 2290 01:35:47,320 --> 01:35:49,680 SPEAK THEIR OWN LANGUAGES. 2291 01:35:49,680 --> 01:35:53,040 SO THERE THAT WAS ONE OF THE 2292 01:35:53,040 --> 01:35:53,840 STRATEGIES. 2293 01:35:53,840 --> 01:35:55,160 ANOTHER THING THAT I LEARNED 2294 01:35:55,160 --> 01:36:02,280 FROM ANOTHER RESEARCH FOCUSING 2295 01:36:02,280 --> 01:36:11,520 -- ON -- THE POPULATION -- THE 2296 01:36:11,520 --> 01:36:14,560 ON-LINE SURVEYS AT THE AGENCY 2297 01:36:14,560 --> 01:36:21,000 THE DIRECTOR -- THOUGHT THIS IS 2298 01:36:21,000 --> 01:36:24,480 -- AND I WANT TO INTRODUCE YOUR 2299 01:36:24,480 --> 01:36:28,320 STUDY TO OTHER PEOPLE. 2300 01:36:28,320 --> 01:36:30,280 HE DIRECTED THE DIRECTORS OF 2301 01:36:30,280 --> 01:36:33,120 OTHER AGENCIES IN NEW YORK CITY. 2302 01:36:33,120 --> 01:36:37,000 THE BUILDING IN STRONG IN THE 2303 01:36:37,000 --> 01:36:38,440 TRUST RELATIONSHIP AND LEADING 2304 01:36:38,440 --> 01:36:42,200 TO FUTURE STUDY AND THEN IT 2305 01:36:42,200 --> 01:36:45,400 MAKES ME MORE -- MAKES ME EASY 2306 01:36:45,400 --> 01:36:47,880 TO RECRUIT NEW PARTICIPANTS AND 2307 01:36:47,880 --> 01:36:50,920 I HAVE LOTS OF CHANGES TO 2308 01:36:50,920 --> 01:36:53,120 INTRODUCE -- THE SOCIAL WORKER 2309 01:36:53,120 --> 01:36:55,720 AND RESEARCHERS. 2310 01:36:55,720 --> 01:36:58,760 WITH THOSE TWO THINGS PROVIDING 2311 01:36:58,760 --> 01:37:01,760 SERVICES TO THOSE IMMIGRANT 2312 01:37:01,760 --> 01:37:04,960 POPULATIONS AND THEN WE ARE 2313 01:37:04,960 --> 01:37:07,080 BUILDING A STRONG AND GOOD 2314 01:37:07,080 --> 01:37:08,040 POSITIVE RELATIONSHIP WITH 2315 01:37:08,040 --> 01:37:12,080 COMMUNITY PARTNERS IS NOT JUST 2316 01:37:12,080 --> 01:37:14,320 SHORT-TERM BUT BASED ON THE 2317 01:37:14,320 --> 01:37:16,480 LONG-TERM RELATIONSHIP CAN HELP 2318 01:37:16,480 --> 01:37:23,280 THOSE RESEARCH. 2319 01:37:23,280 --> 01:37:25,000 >> THANK YOU SO MUCH DR. SON. 2320 01:37:25,000 --> 01:37:27,680 A LOT OF THIS SEEMS TO ECCO THE 2321 01:37:27,680 --> 01:37:29,760 POINTS THAT WERE HIGHLIGHTED 2322 01:37:29,760 --> 01:37:31,120 FROM THE LISTENING SESSIONS. 2323 01:37:31,120 --> 01:37:34,920 SO IT'S IMPORTANT TO KNOW AND I 2324 01:37:34,920 --> 01:37:37,680 THINK WE'RE HEARING IT MORE THAN 2325 01:37:37,680 --> 01:37:37,880 ONCE. 2326 01:37:37,880 --> 01:37:40,080 SO, IT'S IMPORTANT TO DRIVE THIS 2327 01:37:40,080 --> 01:37:40,880 POINT HOME. 2328 01:37:40,880 --> 01:37:42,600 SO IF WE CAN GO TO THE NEXT 2329 01:37:42,600 --> 01:37:44,360 SLIDE BECAUSE I WANT TO BE 2330 01:37:44,360 --> 01:37:46,320 RESPECTFUL OF TIME AND I KNOW WE 2331 01:37:46,320 --> 01:37:47,880 HAVE LOTS OF QUESTIONS AND WE 2332 01:37:47,880 --> 01:37:50,480 WANT TO HAVE MORE ENGAGEMENT 2333 01:37:50,480 --> 01:37:53,720 FROM THE PANELISTS AS WELL. 2334 01:37:53,720 --> 01:37:55,360 SO IF YOU CAN GO TO THE NEXT 2335 01:37:55,360 --> 01:38:05,760 SLIDE FOR ME, PLEASE. 2336 01:38:11,200 --> 01:38:13,680 THANK YOU SO MUCH. 2337 01:38:13,680 --> 01:38:18,240 SO THIS IS A TWO PART QUESTION. 2338 01:38:18,240 --> 01:38:20,120 WE HAVE FOR OUR FAMILIES. 2339 01:38:20,120 --> 01:38:21,520 COULD YOU DESCRIBE SOME OF THE 2340 01:38:21,520 --> 01:38:22,680 CHALLENGES THAT YOU FACE. 2341 01:38:22,680 --> 01:38:24,560 SOME OF YOU HAVE SHARED THAT 2342 01:38:24,560 --> 01:38:26,160 ALREADY WITH TAKING PART IN DOWN 2343 01:38:26,160 --> 01:38:27,400 SYNDROME RESEARCH? 2344 01:38:27,400 --> 01:38:29,640 AND HOW EXACTLY DID YOU ADDRESS 2345 01:38:29,640 --> 01:38:31,440 THOSE CHALLENGES? 2346 01:38:31,440 --> 01:38:33,640 THAT IS THE PART THAT WE'RE 2347 01:38:33,640 --> 01:38:36,360 INTERESTED IN. 2348 01:38:36,360 --> 01:38:46,520 AND I'LL SEE IF TAYLOR OR -- 2349 01:38:46,520 --> 01:38:51,000 THANK YOU, TAYLOR 2350 01:38:51,000 --> 01:38:52,840 >> I AM A SOPHOMORE IN HIGH 2351 01:38:52,840 --> 01:38:54,760 SCHOOL AND I HAVE A VERY ACTIVE 2352 01:38:54,760 --> 01:38:56,440 SCHEDULE. 2353 01:38:56,440 --> 01:38:58,560 IT'S HARD TO PARTICIPATE IN 2354 01:38:58,560 --> 01:39:00,760 RESEARCH. 2355 01:39:00,760 --> 01:39:03,960 MY FAMILY TRIES TO PLAN RESEARCH 2356 01:39:03,960 --> 01:39:08,880 TIME AROUND MY BREAKS. 2357 01:39:08,880 --> 01:39:10,560 >> THANK YOU SO MUCH, TAYLOR. 2358 01:39:10,560 --> 01:39:12,400 SO TAKING INTO CONSIDERATION 2359 01:39:12,400 --> 01:39:14,480 YOUR BUSY SCHEDULE AND BEING 2360 01:39:14,480 --> 01:39:15,960 WILLING TO ACCOMMODATE YOU. 2361 01:39:15,960 --> 01:39:17,840 THAT'S AN EXCELLENT POINT. 2362 01:39:17,840 --> 01:39:20,040 KATE. 2363 01:39:20,040 --> 01:39:22,440 OR KATE IF YOU DON'T MIND I'LL 2364 01:39:22,440 --> 01:39:32,960 SEE IF I CAN ASK YADIRA FIRST. 2365 01:39:37,240 --> 01:39:43,360 >> I KNOW ABOUT BUSINESS AND -- 2366 01:39:43,360 --> 01:39:51,000 I LIKE WHEN I RECEIVE A GIFT 2367 01:39:51,000 --> 01:39:54,320 CARD FOR MY PARTICIPATION. 2368 01:39:54,320 --> 01:39:55,880 >> THAT IS A GREAT POINT. 2369 01:39:55,880 --> 01:39:56,240 THANK YOU. 2370 01:39:56,240 --> 01:40:01,520 SO IT'S IMPORTANT THAT YOUR TIME 2371 01:40:01,520 --> 01:40:03,520 IS VALUED AND APPRECIATED AND 2372 01:40:03,520 --> 01:40:05,520 THEN NOT ONLY JUST THE GIVING 2373 01:40:05,520 --> 01:40:08,800 BACK TO RESEARCH BUT A NICE GIFT 2374 01:40:08,800 --> 01:40:10,520 CARD IS NICE FOR YOUR 2375 01:40:10,520 --> 01:40:12,200 PARTICIPATION AS WELL AND 2376 01:40:12,200 --> 01:40:12,960 CONGRATULATIONS ON YOUR 2377 01:40:12,960 --> 01:40:13,520 BOUTIQUE. 2378 01:40:13,520 --> 01:40:15,480 7 2379 01:40:15,480 --> 01:40:17,200 >> THANK YOU. 2380 01:40:17,200 --> 01:40:17,800 >> ABSOLUTELY. 2381 01:40:17,800 --> 01:40:19,360 KATE. 2382 01:40:19,360 --> 01:40:20,560 >> THANK YOU. 2383 01:40:20,560 --> 01:40:22,120 TAYLOR I WANT TO THANK YOU FOR 2384 01:40:22,120 --> 01:40:23,880 BRINGING UP THE ATTENDANCE 2385 01:40:23,880 --> 01:40:24,880 POLICY ISSUES. 2386 01:40:24,880 --> 01:40:28,080 FOR MANY OF OUR SELF-ADVOCATES 2387 01:40:28,080 --> 01:40:32,280 AT LEAST THOSE THAT ARE 2388 01:40:32,280 --> 01:40:35,320 SCHOOL-AGE AND/OR EMPLOYMENT AGE 2389 01:40:35,320 --> 01:40:39,840 -- THE ATTENDANCE POLICIES THAT 2390 01:40:39,840 --> 01:40:40,760 DON'T DIFFERENTIATE FOR 2391 01:40:40,760 --> 01:40:42,560 MEDICALLY KIDS WHO NEED TO 2392 01:40:42,560 --> 01:40:43,640 PARTICIPATE IN MEDICAL RESEARCH 2393 01:40:43,640 --> 01:40:48,920 TRIALS AS WELL AS INSURANCE FOR 2394 01:40:48,920 --> 01:40:49,120 MANY. 2395 01:40:49,120 --> 01:40:51,200 I'M GOING TO ADDRESS SOME THAT I 2396 01:40:51,200 --> 01:40:53,160 KNOW OF THAT HAVE RECENTLY COME 2397 01:40:53,160 --> 01:40:53,600 UP. 2398 01:40:53,600 --> 01:40:56,160 INSURANCE CAN BE A BARRIER TO 2399 01:40:56,160 --> 01:40:57,000 PARTICIPATING IN SOME OF THE 2400 01:40:57,000 --> 01:40:58,600 TRIALS DEPENDING. 2401 01:40:58,600 --> 01:41:00,280 EVEN THOSE TRIALS THAT ARE CLOSE 2402 01:41:00,280 --> 01:41:03,480 TO RESOLUTION THAT WOULD APPEAR 2403 01:41:03,480 --> 01:41:05,280 TO MOST OF US SITTING ON THE 2404 01:41:05,280 --> 01:41:08,280 OUTSIDE IT WOULD BE A SIMPLE 2405 01:41:08,280 --> 01:41:09,920 INSURANCE BUT ATTENDANCE 2406 01:41:09,920 --> 01:41:12,280 POLICIES WITHIN THE SCHOOLS -- 2407 01:41:12,280 --> 01:41:15,360 THAT CAN PRESENT BARRIERS. 2408 01:41:15,360 --> 01:41:17,160 TRAVEL AND TRAVEL COSTS FOR MANY 2409 01:41:17,160 --> 01:41:22,320 OF THE FAMILIES AND NOT TO 2410 01:41:22,320 --> 01:41:24,000 MENTION ONCE YOU IF YOU HAVE TO 2411 01:41:24,000 --> 01:41:26,520 PHYSICALLY BE ON LOCATION 2412 01:41:26,520 --> 01:41:29,360 PERHAPS FOR MEDICAL TESTS MANY 2413 01:41:29,360 --> 01:41:32,720 OF THE HOUSING -- SUCH AS HOTELS 2414 01:41:32,720 --> 01:41:37,320 AND AIRFARE AND TRAVEL COSTS CAN 2415 01:41:37,320 --> 01:41:39,080 BE SOCIOECONIMICALLY 2416 01:41:39,080 --> 01:41:40,600 PROHIBITIVE. 2417 01:41:40,600 --> 01:41:41,720 >> THANK YOU, KATE. 2418 01:41:41,720 --> 01:41:47,200 AND I KNOW THAT DOLL RAISED 2419 01:41:47,200 --> 01:41:49,960 EARLIER SOME OF THE CHALLENGES 2420 01:41:49,960 --> 01:41:52,320 WITHIN THE NAVAJO NATION IN THAT 2421 01:41:52,320 --> 01:41:53,560 THERE ARE COMMUNITIES THAT HAVE 2422 01:41:53,560 --> 01:41:55,200 NOT HEARD ABOUT ANY OF THE 2423 01:41:55,200 --> 01:41:55,680 RESEARCH. 2424 01:41:55,680 --> 01:41:58,640 SO I KNOW THAT THE EFFORTS, WE 2425 01:41:58,640 --> 01:42:01,080 THANK HER AND THE NAVAJO NATION 2426 01:42:01,080 --> 01:42:03,520 COUNCIL FOR SHARING THAT 2427 01:42:03,520 --> 01:42:05,280 INFORMATION WITH THE COMMUNITY. 2428 01:42:05,280 --> 01:42:07,400 AND ALSO HIGHLIGHTS ONE OF THE 2429 01:42:07,400 --> 01:42:12,240 THINGS THAT NOT TO PUT IT ON 2430 01:42:12,240 --> 01:42:19,920 JOAQUIN ON YOUR TO-DO LIST -- 2431 01:42:19,920 --> 01:42:21,360 >> DOLORES SHARED HER CONTACT 2432 01:42:21,360 --> 01:42:23,800 INFORMATION AND WE'RE ON IT 2433 01:42:23,800 --> 01:42:28,800 >> NO PRESSURE. 2434 01:42:28,800 --> 01:42:31,040 >> AND I WAS NOT SURE IF THERE 2435 01:42:31,040 --> 01:42:32,920 WERE OTHER FAMILY MEMBERS WHO 2436 01:42:32,920 --> 01:42:34,960 WANTED TO SHARE SOME OF THEIR 2437 01:42:34,960 --> 01:42:35,680 EXPERIENCE. 2438 01:42:35,680 --> 01:42:40,080 I KNOW DR. TORRES OR MR. TORRES 2439 01:42:40,080 --> 01:42:48,920 MENTIONED THAT THOSE WITH LOWER 2440 01:42:48,920 --> 01:42:50,680 SOCIOECONOMIC POPULATIONS WERE 2441 01:42:50,680 --> 01:42:51,080 NOT REPRESENTED 2442 01:42:51,080 --> 01:42:51,760 >> THANK YOU. 2443 01:42:51,760 --> 01:42:54,920 I HAVE TO SAY THAT THE PRINCIPLE 2444 01:42:54,920 --> 01:42:57,360 INSTITUTION OR ORGANIZATION DOWN 2445 01:42:57,360 --> 01:43:00,880 HERE IN PUERTO RICO TO PERFORM 2446 01:43:00,880 --> 01:43:02,440 RESEARCH -- THE ENVIRONMENT OF 2447 01:43:02,440 --> 01:43:07,400 HEALTH AND WHEN THEY DO OR 2448 01:43:07,400 --> 01:43:09,520 PERFORM A STUDY THEY INCLUDE ALL 2449 01:43:09,520 --> 01:43:12,040 OF THE PERSONS WITH 2450 01:43:12,040 --> 01:43:12,560 DISABILITIES. 2451 01:43:12,560 --> 01:43:15,760 NOT NECESSARILY FOR DOWN 2452 01:43:15,760 --> 01:43:16,520 SYNDROME. 2453 01:43:16,520 --> 01:43:18,840 THAT MEANS THAT THE RESULTS ARE 2454 01:43:18,840 --> 01:43:23,000 A GROUP OF CONDITIONS. 2455 01:43:23,000 --> 01:43:27,760 AND THE RESULT USED BY OTHER 2456 01:43:27,760 --> 01:43:28,760 INSTITUTIONS SUCH AS THE 2457 01:43:28,760 --> 01:43:31,760 DEPARTMENT OF EDUCATION IN WHICH 2458 01:43:31,760 --> 01:43:35,040 THEY APPLY OKAY DATES BASED ON 2459 01:43:35,040 --> 01:43:36,200 GENERAL DISABILITY. 2460 01:43:36,200 --> 01:43:37,400 AS A WHOLE. 2461 01:43:37,400 --> 01:43:40,200 NOT NECESSARILY AS A DOWN 2462 01:43:40,200 --> 01:43:41,120 SYNDROME POSITION. 2463 01:43:41,120 --> 01:43:47,360 7 AND WHEN WE GO TO SCHOOLS -- 2464 01:43:47,360 --> 01:43:50,800 WE RECEIVE SOME TREATMENT, WE 2465 01:43:50,800 --> 01:43:56,080 RECEIVE SOME EDUCATION. 2466 01:43:56,080 --> 01:43:57,920 HIGHLIGHTS THAT ARE NOT 2467 01:43:57,920 --> 01:43:59,000 NECESSARILY DIRECTOR OUR 2468 01:43:59,000 --> 01:44:00,520 POPULATION. 2469 01:44:00,520 --> 01:44:04,920 HOW CAN WE DEAL WITH THAT? 2470 01:44:04,920 --> 01:44:07,920 SOME INSTITUTION OR GROUP LIKE 2471 01:44:07,920 --> 01:44:14,520 US LOOK FOR OTHERS STATISTICS 2472 01:44:14,520 --> 01:44:16,720 THAT COME FROM THE MAINLAND THAT 2473 01:44:16,720 --> 01:44:21,760 IS NOT REPRESENTING OUR LATINO 2474 01:44:21,760 --> 01:44:23,880 COMMUNITY OUR ISLAND CONDITION. 2475 01:44:23,880 --> 01:44:29,440 THAT MEANS THAT WE NEED TO FOCUS 2476 01:44:29,440 --> 01:44:31,920 ON DOWN SYNDROME RESEARCH PER 2477 01:44:31,920 --> 01:44:32,200 SAY. 2478 01:44:32,200 --> 01:44:35,800 NOT AS A WHOLE DISABILITY. 2479 01:44:35,800 --> 01:44:38,920 GROUP. 2480 01:44:38,920 --> 01:44:40,400 >> IF YOU DON'T MIND I WOULD 2481 01:44:40,400 --> 01:44:43,160 LIKE TO SHARE THAT THE INCLUDED 2482 01:44:43,160 --> 01:44:44,600 COORDINATING CENTER WILL BE IN 2483 01:44:44,600 --> 01:44:49,040 SAN JUAN ON OCTOBER 25th. 2484 01:44:49,040 --> 01:44:53,080 THE CONFERENCE THAT YOU MAY BE 2485 01:44:53,080 --> 01:44:54,680 FAMILIAR WITH. 2486 01:44:54,680 --> 01:44:56,640 WILL BE THERE AND MAYBE WE CAN 2487 01:44:56,640 --> 01:44:58,720 CONNECT THERE AS WELL AND SHARE 2488 01:44:58,720 --> 01:45:00,560 MORE ABOUT THE RESEARCH 2489 01:45:00,560 --> 01:45:02,120 >> I RECEIVED THIS NOTIFICATION 2490 01:45:02,120 --> 01:45:04,200 AND I WILL BE THERE. 2491 01:45:04,200 --> 01:45:06,520 I WILL MAKE ALL OF THE 2492 01:45:06,520 --> 01:45:08,480 ARRANGEMENTS TO ATTEND THIS. 2493 01:45:08,480 --> 01:45:10,960 THANK YOU. 2494 01:45:10,960 --> 01:45:11,960 >> THAT IS EXCELLENT. 2495 01:45:11,960 --> 01:45:14,280 I DON'T KNOW IF ANY OF THE OTHER 2496 01:45:14,280 --> 01:45:16,400 FAMILY MEMBERS HAVE INPUT? 2497 01:45:16,400 --> 01:45:19,640 BUT IF NOT WE CAN GO TO THE NEXT 2498 01:45:19,640 --> 01:45:21,280 QUESTION AND THIS IS FOR THE 2499 01:45:21,280 --> 01:45:31,480 RESEARCHERS. 2500 01:45:32,880 --> 01:45:33,840 >> I HAVE A QUESTION. 2501 01:45:33,840 --> 01:45:35,320 I HAVE A QUESTION. 2502 01:45:35,320 --> 01:45:37,680 >> ABSOLUTELY. 2503 01:45:37,680 --> 01:45:39,200 >> THAT I HAVE BEEN PUTTING IN 2504 01:45:39,200 --> 01:45:39,800 THE CHAT. 2505 01:45:39,800 --> 01:45:45,000 I WOULD LIKE TO KNOW MY NAME IS 2506 01:45:45,000 --> 01:45:47,320 -- RAMOS AND I AM FROM PUERTO 2507 01:45:47,320 --> 01:45:47,760 RICO. 2508 01:45:47,760 --> 01:45:53,120 I HAVEI HAVE DAUGHTER WITH DOWN 2509 01:45:53,120 --> 01:45:54,640 SYNDROME AND THE QUESTION IS HOW 2510 01:45:54,640 --> 01:45:56,120 MANY FAMILIES OR PEOPLE WITH 2511 01:45:56,120 --> 01:45:59,280 DOWN SYNDROME IN TERMS OF 2512 01:45:59,280 --> 01:46:03,440 PERCENTAGE ARE IMPACTING IN THE 2513 01:46:03,440 --> 01:46:07,520 U.S. AND SPECIFICALLY IN PUERTO 2514 01:46:07,520 --> 01:46:07,760 RICO? 2515 01:46:07,760 --> 01:46:10,480 IF THERE IS A NUMBER. 2516 01:46:10,480 --> 01:46:12,320 >> THE POPULATION. 2517 01:46:12,320 --> 01:46:15,000 I BELIEVE THAT INFORMATION MAY 2518 01:46:15,000 --> 01:46:17,560 BE AVAILABLE ON DS CONNECT BUT 2519 01:46:17,560 --> 01:46:20,000 WE ARE MORE THAN HAPPY TO 2520 01:46:20,000 --> 01:46:22,280 FOLLOW-UP WITH YOU. 2521 01:46:22,280 --> 01:46:24,080 US PERSONALLY DON'T KNOW THE 2522 01:46:24,080 --> 01:46:25,880 NUMBER OFFHAND HOWEVER WE'RE 2523 01:46:25,880 --> 01:46:28,240 MORE THAN HAPPY TO FOLLOW-UP AND 2524 01:46:28,240 --> 01:46:29,880 SHARE THAT INFORMATION WITH YOU 2525 01:46:29,880 --> 01:46:31,040 IF YOU WOULD LIKE. 2526 01:46:31,040 --> 01:46:32,160 >> THANK YOU. 2527 01:46:32,160 --> 01:46:34,960 >> ABSOLUTELY. 2528 01:46:34,960 --> 01:46:37,960 I SEE THAT YADIRA HAS HER HAND 2529 01:46:37,960 --> 01:46:43,880 RAISED. 2530 01:46:43,880 --> 01:46:45,880 DO YOU HAVE ANY FEEDBACK FOR 2531 01:46:45,880 --> 01:46:48,160 THIS QUESTION? 2532 01:46:48,160 --> 01:46:50,760 MAYBE IT WAS AN EXCELLENT. 2533 01:46:50,760 --> 01:46:53,120 SO THEN WE'LL GO TO THE NEXT 2534 01:46:53,120 --> 01:46:55,320 SLIDE IF WE MAY. 2535 01:46:55,320 --> 01:47:03,520 FOR THE RESEARCHERS. 2536 01:47:03,520 --> 01:47:06,200 SO THIS QUESTION: AND I'LL OPEN 2537 01:47:06,200 --> 01:47:08,840 IT UP TO THE GROUP. 2538 01:47:08,840 --> 01:47:11,120 WHAT CAN HELP, WHAT DO YOU THINK 2539 01:47:11,120 --> 01:47:13,160 CAN HELP FACILITATE 2540 01:47:13,160 --> 01:47:14,320 PARTICIPATION IN CLINICAL 2541 01:47:14,320 --> 01:47:16,320 RESEARCH BY PEOPLE IN UNDER 2542 01:47:16,320 --> 01:47:17,520 REPRESENTED AND UNDERSERVED 2543 01:47:17,520 --> 01:47:20,640 COMMUNITIES? 2544 01:47:20,640 --> 01:47:22,720 DR. TAPIA. 2545 01:47:22,720 --> 01:47:23,960 >> THANK YOU. 2546 01:47:23,960 --> 01:47:26,000 IT'S THE FLEXIBILITY BECAUSE 2547 01:47:26,000 --> 01:47:27,240 FAMILIES ARE CHILDREN WITH DOWN 2548 01:47:27,240 --> 01:47:29,240 SYNDROME THEY HAVE SO MANY 2549 01:47:29,240 --> 01:47:31,200 COMPETING ACTIVITIES TO DO. 2550 01:47:31,200 --> 01:47:32,800 WITH DIFFERENT THERAPIES FOR 2551 01:47:32,800 --> 01:47:33,200 EXAMPLE. 2552 01:47:33,200 --> 01:47:36,840 IF COMMUNITIES THAT ARE 2553 01:47:36,840 --> 01:47:38,920 UNDERSERVED THAT ADDS AN 2554 01:47:38,920 --> 01:47:40,440 ADDITIONAL LAYER OF COMMITMENTS. 2555 01:47:40,440 --> 01:47:43,280 THEY MAY HAVE TWO OR THREE JOBS 2556 01:47:43,280 --> 01:47:45,600 AND IT MAY BE ONEROUS TO TAKE A 2557 01:47:45,600 --> 01:47:47,880 DAY OFF. 2558 01:47:47,880 --> 01:47:52,160 SO I WOULD GO ALONG THOSE LINES. 2559 01:47:52,160 --> 01:47:54,760 REIMBURSEMENT NEEDS TO BE 2560 01:47:54,760 --> 01:47:57,760 REALISTIC TO COMPENSATE AND 2561 01:47:57,760 --> 01:48:00,200 MAYBE THAT THEY NEED TO PAY 2562 01:48:00,200 --> 01:48:03,000 SOMEONE ELSE TO LOOK TO THEIR 2563 01:48:03,000 --> 01:48:05,640 OTHER KIDS AT HOME WHILE THEY 2564 01:48:05,640 --> 01:48:07,840 ARE WITH US COMPLETING A TASK. 2565 01:48:07,840 --> 01:48:09,600 SO THAT IS SOMETHING THAT WE 2566 01:48:09,600 --> 01:48:12,720 NEED TO BE COGNIZANT ABOUT. 2567 01:48:12,720 --> 01:48:14,200 >> TAKING IN THE WHOLE FAMILY 2568 01:48:14,200 --> 01:48:15,680 AND NOT JUST THE INDIVIDUAL AND 2569 01:48:15,680 --> 01:48:20,080 THE CARE GIVER. 2570 01:48:20,080 --> 01:48:27,440 DR. ESPINOZA. 2571 01:48:27,440 --> 01:48:28,400 >> FLEXIBILITY AT EVERY STEP OF 2572 01:48:28,400 --> 01:48:29,560 THE PROCESS. 2573 01:48:29,560 --> 01:48:31,400 ARRANGING FOR PARKING. 2574 01:48:31,400 --> 01:48:33,400 CLEAN INSTRUCTIONS ON HOW TO 2575 01:48:33,400 --> 01:48:36,440 FIND THE BUILDING. 2576 01:48:36,440 --> 01:48:39,200 FLEXIBILITY WITH THE SCHEDULING. 2577 01:48:39,200 --> 01:48:43,880 I WOULD LIKE TO ADD TO THAT 2578 01:48:43,880 --> 01:48:44,840 INCREASING DIVERSITY IN WHAT I 2579 01:48:44,840 --> 01:48:46,520 CALL THE FRONT END OF THE 2580 01:48:46,520 --> 01:48:49,160 RESEARCH ENTERPRISE. 2581 01:48:49,160 --> 01:48:50,800 THE COORDINATION TEAM. 2582 01:48:50,800 --> 01:48:53,280 AT THE END OF THE DAY IT IS THE 2583 01:48:53,280 --> 01:48:54,800 CLINICAL COORDINATORS TALKING TO 2584 01:48:54,800 --> 01:48:56,720 THE FAMILIES AND COMPARING 2585 01:48:56,720 --> 01:48:59,960 CALENDARS AND ARRANGING TRAVEL. 2586 01:48:59,960 --> 01:49:03,840 IF THE APPOINTMENT CANNOT BE MET 2587 01:49:03,840 --> 01:49:04,480 RESCHEDULING. 2588 01:49:04,480 --> 01:49:06,480 IT'S IMPORTANT THAT WE THE 2589 01:49:06,480 --> 01:49:07,840 SCIENTISTS DO OUR BEST EFFORT TO 2590 01:49:07,840 --> 01:49:09,600 MAKE SURE THAT THAT TEAM THE 2591 01:49:09,600 --> 01:49:11,000 TEAM THAT WILL BE INTERACTING 2592 01:49:11,000 --> 01:49:12,560 WITH THE FAMILIES AND COMMUNITY 2593 01:49:12,560 --> 01:49:14,280 IS DIVERSE. 2594 01:49:14,280 --> 01:49:16,840 BY LINGUAL IF POSSIBLE OR OTHER 2595 01:49:16,840 --> 01:49:20,280 FORMS OF DIVERSITY TO FACILITATE 2596 01:49:20,280 --> 01:49:21,880 THAT REPORT WITH THE RESEARCH 2597 01:49:21,880 --> 01:49:24,280 PARTICIPANTS. 2598 01:49:24,280 --> 01:49:28,120 >> GREAT POINT. 2599 01:49:28,120 --> 01:49:30,720 PARTICIPANT -- 2600 01:49:30,720 --> 01:49:32,520 >> I THERE ARE SAID THIS EARLIER 2601 01:49:32,520 --> 01:49:33,960 BUT I WANT TO REPEAT IT. 2602 01:49:33,960 --> 01:49:38,200 I WANT TO AGREE WITH DR. TAPIA 2603 01:49:38,200 --> 01:49:41,200 AND DR. ESPINOZA. 2604 01:49:41,200 --> 01:49:44,720 AND THEN I WANT TO SAY AS A 2605 01:49:44,720 --> 01:49:49,840 CLINICIAN RESEARCHER MY HEAD IS 2606 01:49:49,840 --> 01:49:51,880 UNDERWATER TRYING TO SOLVE REAL 2607 01:49:51,880 --> 01:49:57,920 PROBLEMS FOR FAMILIES EVERY DAY. 2608 01:49:57,920 --> 01:50:00,800 REALLY TRYING TO * REMOVE 2609 01:50:00,800 --> 01:50:02,480 BARRIERS THAT OUR UNDERSERVED 2610 01:50:02,480 --> 01:50:04,040 COMMUNITIES ARE FACING EVERY DAY 2611 01:50:04,040 --> 01:50:05,920 WHETHER IT'S ACCESS TO 2612 01:50:05,920 --> 01:50:07,640 APPROPRIATE EDUCATIONAL 2613 01:50:07,640 --> 01:50:09,400 SERVICES, DISABILITY BENEFITS. 2614 01:50:09,400 --> 01:50:10,720 WHATEVER ELSE. 2615 01:50:10,720 --> 01:50:14,000 SO, ITS HARD FOR ME TO LIFT MY 2616 01:50:14,000 --> 01:50:17,400 HEAD ABOVE WATER TO LOOK FOR THE 2617 01:50:17,400 --> 01:50:19,480 RIGHT RESEARCH GRANT TO FIND THE 2618 01:50:19,480 --> 01:50:22,360 RIGHT CLINICAL COORDINATOR TYPE 2619 01:50:22,360 --> 01:50:24,840 POSITION TO PUT IN PLACE MY 2620 01:50:24,840 --> 01:50:27,640 GRAND RESEARCH IDEA AND YET I 2621 01:50:27,640 --> 01:50:30,760 KNOW THAT MY PATIENTS WITH DOWN 2622 01:50:30,760 --> 01:50:33,840 SYNDROME WHO ARE BLACK WHO ARE 2623 01:50:33,840 --> 01:50:36,080 SPANISH SPEAKING, WHO ARE ASIAN 2624 01:50:36,080 --> 01:50:38,120 AND SPEAK ALL KINDS OF DIFFERENT 2625 01:50:38,120 --> 01:50:40,920 LANGUAGES I DON'T HAVE NATIVE 2626 01:50:40,920 --> 01:50:41,920 AMERICAN PATIENTS WITH DOWN 2627 01:50:41,920 --> 01:50:43,120 SYNDROME AT THIS TIME. 2628 01:50:43,120 --> 01:50:44,880 YOU I HAVE ARABIC SPEAKING 2629 01:50:44,880 --> 01:50:45,560 PATIENTS. 2630 01:50:45,560 --> 01:50:51,600 THIS HUGELY DIVERSE -- PATIENTLY 2631 01:50:51,600 --> 01:50:55,800 POPULATION THAT WOULD BE ENGAGED 2632 01:50:55,800 --> 01:50:58,360 IN RESEARCH WERE I HAVE TO 2633 01:50:58,360 --> 01:51:01,280 SUPPORT. 2634 01:51:01,280 --> 01:51:02,880 YES INCLUDE. 2635 01:51:02,880 --> 01:51:06,400 THE HUMAN TRIZOME PROJECT. 2636 01:51:06,400 --> 01:51:09,640 IF YOU WANT TO REACH * THOSE 2637 01:51:09,640 --> 01:51:11,840 FAMILIES FROM THOSE UNDERSERVED 2638 01:51:11,840 --> 01:51:13,560 BACKGROUNDS YOU MUST SUPPORT THE 2639 01:51:13,560 --> 01:51:14,760 CLINICAL PROGRAMS THAT SUPPORT 2640 01:51:14,760 --> 01:51:16,120 THEM. 2641 01:51:16,120 --> 01:51:19,080 THAT IS WHAT I THINK IS REALLY 2642 01:51:19,080 --> 01:51:23,480 GOING TO FACILITATE DIVERSE 2643 01:51:23,480 --> 01:51:25,200 PARTICIPATION IN CLINICAL 2644 01:51:25,200 --> 01:51:26,800 RESEARCH. 2645 01:51:26,800 --> 01:51:27,840 SUPPORTING THE PROGRAMS THAT 2646 01:51:27,840 --> 01:51:29,840 HELP THOSE FAMILIES DAY IN AND 2647 01:51:29,840 --> 01:51:32,840 DAY OUT SO THAT WE CAN THEN 2648 01:51:32,840 --> 01:51:34,920 FACILITATE THAT KIND OF 2649 01:51:34,920 --> 01:51:35,880 PARTICIPATION. 2650 01:51:35,880 --> 01:51:39,560 >> THAT'S AN EXCELLENT POINT. 2651 01:51:39,560 --> 01:51:40,680 DR. McCORMICK. 2652 01:51:40,680 --> 01:51:43,200 >> AND I'LL ADD ANOTHER 2653 01:51:43,200 --> 01:51:43,920 PERSPECTIVE TO JUST THINKING 2654 01:51:43,920 --> 01:51:48,960 ABOUT OFTEN WHEN WE AS 2655 01:51:48,960 --> 01:51:50,520 CLINICIANS ARE THINKING ABOUT 2656 01:51:50,520 --> 01:51:51,840 RESEARCH IDEAS WE'RE BASING IT 2657 01:51:51,840 --> 01:51:53,040 ON OUR EXPERIENCE. 2658 01:51:53,040 --> 01:51:55,040 WHAT ARE THE THINGS THAT WE'RE 2659 01:51:55,040 --> 01:51:56,800 SEEING THAT SEEM TO BE IMPORTANT 2660 01:51:56,800 --> 01:51:59,200 FROM OUR PERSPECTIVE? 2661 01:51:59,200 --> 01:52:02,000 AND IF WE FLIP IT WE START 2662 01:52:02,000 --> 01:52:05,280 ASKING COMMUNITIES IN OUR 2663 01:52:05,280 --> 01:52:06,600 UNDERSERVED COMMUNITY. 2664 01:52:06,600 --> 01:52:08,280 WHAT ARE THE IMPORTANT PROBLEMS 2665 01:52:08,280 --> 01:52:11,680 TO THEM AND HOW CAN WE 2666 01:52:11,680 --> 01:52:12,840 COLLABORATE AND PROVIDE 2667 01:52:12,840 --> 01:52:14,480 SOLUTIONS. 2668 01:52:14,480 --> 01:52:16,360 THE FIRST THING THEY DID IN THE 2669 01:52:16,360 --> 01:52:18,480 PITTSBURGH STUDY IS THEY GOT 2670 01:52:18,480 --> 01:52:20,040 COMMUNITY PARTNERS TOGETHER AND 2671 01:52:20,040 --> 01:52:22,960 CREATED A CONSENT MAP OF WHAT 2672 01:52:22,960 --> 01:52:27,000 DOES THRIVING MEAN TO THE 2673 01:52:27,000 --> 01:52:27,440 COMMUNITY. 2674 01:52:27,440 --> 01:52:29,560 WE NEED TO FLIP THE SCRIPT ON 2675 01:52:29,560 --> 01:52:31,520 HOW WE DEVELOP RESEARCH IDEAS 2676 01:52:31,520 --> 01:52:33,200 AND DEVELOP RESEARCH NEEDS AND 2677 01:52:33,200 --> 01:52:34,720 ASK OUR COMMUNITIES WHAT ARE THE 2678 01:52:34,720 --> 01:52:35,680 THINGS THAT ARE IMPORTANT TO 2679 01:52:35,680 --> 01:52:38,360 THEM BEFORE WE START THINKING 2680 01:52:38,360 --> 01:52:40,280 FROM OUR AGENDA OF WHAT MAKES 2681 01:52:40,280 --> 01:52:41,520 SENSE TO US? 2682 01:52:41,520 --> 01:52:42,960 THOSE ARE IMPORTANT THINGS TOO 2683 01:52:42,960 --> 01:52:45,280 T. WE HAVE EXPERTISE BUT WE'RE 2684 01:52:45,280 --> 01:52:47,360 NOT THE ONES LIVING IN THE 2685 01:52:47,360 --> 01:52:49,680 COMMUNITIES *. 2686 01:52:49,680 --> 01:52:52,440 NOEMI SAID IT MAY BE ABOUT 2687 01:52:52,440 --> 01:52:54,320 ACCESS TO EDUCATION. 2688 01:52:54,320 --> 01:52:56,520 MAYBE ABOUT ACCESS TO FINANCIAL 2689 01:52:56,520 --> 01:52:58,400 SOURCES AND HOW CAN WE 2690 01:52:58,400 --> 01:52:59,040 COLLABORATE. 2691 01:52:59,040 --> 01:53:00,960 WE NEED TO THINK DIFFERENTLY 2692 01:53:00,960 --> 01:53:02,560 ABOUT WHAT ARE THE GOALS OF 2693 01:53:02,560 --> 01:53:04,640 RESEARCH AND WHAT ARE THE 2694 01:53:04,640 --> 01:53:05,800 PROBLEMS AND QUESTIONS WE'RE 2695 01:53:05,800 --> 01:53:07,240 TRYING TO SOLVE? 2696 01:53:07,240 --> 01:53:08,560 >> THANK YOU SO MUCH. 2697 01:53:08,560 --> 01:53:13,240 DR. SON. 2698 01:53:13,240 --> 01:53:19,280 >> I THINK AS A RESEARCHER WE 2699 01:53:19,280 --> 01:53:21,400 NEED TO PROVIDE SUBSTANTIAL 2700 01:53:21,400 --> 01:53:23,040 OUTCOMES TO THE PARTICIPANTS. 2701 01:53:23,040 --> 01:53:24,720 BECAUSE THE PARTICIPANTS THEY 2702 01:53:24,720 --> 01:53:27,040 ARE SPENDING LOTS OF TIME AND 2703 01:53:27,040 --> 01:53:29,160 EFFORTS TO PARTICIPATE IN 2704 01:53:29,160 --> 01:53:32,800 CLINICAL RESEARCH. 2705 01:53:32,800 --> 01:53:40,600 THEY DO NOT SEE THE CLEAR 2706 01:53:40,600 --> 01:53:43,440 OUTCOMES IT WILL REDUCE THEIR 2707 01:53:43,440 --> 01:53:45,240 MOTIVATIONS FOR PARTICIPATING 2708 01:53:45,240 --> 01:53:46,760 IN FUTURE STUDIES. 2709 01:53:46,760 --> 01:53:49,720 I KNOW THAT MANY RESEARCHERS ARE 2710 01:53:49,720 --> 01:53:52,080 TRYING THEIR BEST TO PROVIDE THE 2711 01:53:52,080 --> 01:53:55,200 BEST POSSIBLE OUTCOMES TOWARD 2712 01:53:55,200 --> 01:53:57,400 THE POPULATION BUT SOMETIMES THE 2713 01:53:57,400 --> 01:53:59,280 COMMUNICATION IS NOT CLEAR AND 2714 01:53:59,280 --> 01:54:01,360 THEN THE PARTICIPANTS ARE STILL 2715 01:54:01,360 --> 01:54:02,880 THINKING THEY ARE JUST DOING IT 2716 01:54:02,880 --> 01:54:04,560 FOR THEIR RESEARCH. 2717 01:54:04,560 --> 01:54:06,000 IF THEY HAVE THAT KIND OF 2718 01:54:06,000 --> 01:54:11,000 MIND-SET BASED ON REPEATED 2719 01:54:11,000 --> 01:54:12,560 EXPERIENCES WORKING WITH THE 2720 01:54:12,560 --> 01:54:14,440 RESEARCHERS IT'S NOT GOING TO 2721 01:54:14,440 --> 01:54:17,680 WORK WITH FUTURE PARTICIPATION. 2722 01:54:17,680 --> 01:54:19,720 SO I THINK USING THEIR OWN 2723 01:54:19,720 --> 01:54:25,440 LANGUAGE IT'S NOT USING MEDICAL 2724 01:54:25,440 --> 01:54:26,960 TERMS BUT MAKE IT MORE 2725 01:54:26,960 --> 01:54:30,200 ACCESSIBLE TO UNDERSTAND THE 2726 01:54:30,200 --> 01:54:32,520 CONCEPTS OF THE OUTCOME BASED ON 2727 01:54:32,520 --> 01:54:35,120 THE RESEARCH PARTICIPATION AND 2728 01:54:35,120 --> 01:54:37,480 HOW IT WILL BE EFFECTING THEIR 2729 01:54:37,480 --> 01:54:40,160 WHOLE COMMUNITY NOT JUST FOR 2730 01:54:40,160 --> 01:54:40,920 INDIVIDUALS. 2731 01:54:40,920 --> 01:54:44,440 IT WILL CREATE A SENSE OF 2732 01:54:44,440 --> 01:54:48,160 COMMUNITY SO I THINK IN THAT WAY 2733 01:54:48,160 --> 01:54:50,000 THEY WOULD BE MORE WILLING TO 2734 01:54:50,000 --> 01:54:51,120 PARTICIPATE IN THE CLINICAL 2735 01:54:51,120 --> 01:54:52,160 RESEARCH. 2736 01:54:52,160 --> 01:54:54,040 >> THAT IS A GREAT POINT 2737 01:54:54,040 --> 01:54:57,440 ENVELOPE TERMS OF IDENTIFYING 2738 01:54:57,440 --> 01:54:58,920 WITH THE FAMILIES AND THE 2739 01:54:58,920 --> 01:55:00,720 INDIVIDUALS WHO ARE THE BENEFITS 2740 01:55:00,720 --> 01:55:04,720 NOT ONLY FOR THEY THEMSELVES BUT 2741 01:55:04,720 --> 01:55:06,680 PERHAPS LONG-TERM FOR THE 2742 01:55:06,680 --> 01:55:07,360 SCIENTIFIC AND RESEARCH 2743 01:55:07,360 --> 01:55:07,840 COMMUNITY. 2744 01:55:07,840 --> 01:55:10,160 IF WE CAN GO TO THE NEXT SLIDE 2745 01:55:10,160 --> 01:55:11,680 BECAUSE I WANT TO MAKE SURE WE 2746 01:55:11,680 --> 01:55:13,040 HAVE ENOUGH TIME FOR THIS 2747 01:55:13,040 --> 01:55:16,880 QUESTION. 2748 01:55:16,880 --> 01:55:19,440 AND I BELIEVE IT'S ONE MORE 2749 01:55:19,440 --> 01:55:21,840 SLIDE. 2750 01:55:21,840 --> 01:55:23,640 SO THIS IS THE CRUX OF WHY WE'RE 2751 01:55:23,640 --> 01:55:24,840 HERE. 2752 01:55:24,840 --> 01:55:26,720 AND THIS IS A QUESTION FOR OUR 2753 01:55:26,720 --> 01:55:28,800 FAMILIES IN TERMS OF HOW IS IT 2754 01:55:28,800 --> 01:55:30,720 THAT YOU THINK WE CAN BUILD 2755 01:55:30,720 --> 01:55:32,880 TRUST WITHIN YOUR COMMUNITY? 2756 01:55:32,880 --> 01:55:35,840 WE'VE HEARD A LOT OF FEEDBACK SO 2757 01:55:35,840 --> 01:55:40,320 FAR BUT I WILL TURN IT TO YADIRA 2758 01:55:40,320 --> 01:55:42,360 TO START US OFF WITH THIS 2759 01:55:42,360 --> 01:55:52,520 QUESTION. 2760 01:55:54,000 --> 01:55:57,240 >> YOU'RE MUTED. 2761 01:55:57,240 --> 01:56:01,960 >> OKAY. 2762 01:56:01,960 --> 01:56:12,440 MAKE SURE -- INCLUDING -- SO 2763 01:56:18,200 --> 01:56:22,880 THAT -- 2764 01:56:22,880 --> 01:56:25,800 >> I THINK THAT IS SUCH A 2765 01:56:25,800 --> 01:56:26,400 CRITICAL POINT. 2766 01:56:26,400 --> 01:56:28,240 IT IS IMPORTANT THAT OUR 2767 01:56:28,240 --> 01:56:29,480 WEBSITES AND WHATEVER 2768 01:56:29,480 --> 01:56:30,160 INFORMATION THAT WE MAKE 2769 01:56:30,160 --> 01:56:33,200 AVAILABLE IS TRANSLATED INTO 2770 01:56:33,200 --> 01:56:35,200 DIFFERENT LANGUAGES. 2771 01:56:35,200 --> 01:56:37,640 THAT IT'S ABOUT REACHING THE 2772 01:56:37,640 --> 01:56:39,040 FAMILIES AND ALSO THE 2773 01:56:39,040 --> 01:56:41,120 INDIVIDUALS THAT THEY ARE ABLE 2774 01:56:41,120 --> 01:56:42,320 TO EDUCATE THEMSELVES. 2775 01:56:42,320 --> 01:56:43,600 THAT IS A GREAT POINT. 2776 01:56:43,600 --> 01:56:50,200 TAYLOR. 2777 01:56:50,200 --> 01:56:53,640 >> FIRST THING THAT MATTERS, 2778 01:56:53,640 --> 01:56:58,160 MAKE SURE THAT THE -- DOWN 2779 01:56:58,160 --> 01:57:01,160 SYNDROME COMMUNITY THAT IS USING 2780 01:57:01,160 --> 01:57:05,040 IN RESEARCH LIKE GLOBAL AND ONLY 2781 01:57:05,040 --> 01:57:06,280 THE RESEARCH TEAM -- 2782 01:57:06,280 --> 01:57:07,400 >> THANK YOU, TAYLOR. 2783 01:57:07,400 --> 01:57:10,160 THAT IS A GREAT POINT AND I 2784 01:57:10,160 --> 01:57:12,160 THINK THAT JOAQUIN ALSO 2785 01:57:12,160 --> 01:57:14,080 MENTIONED THAT IS THE IMPORTANCE 2786 01:57:14,080 --> 01:57:16,840 OF REPRESENTATION IN THE 2787 01:57:16,840 --> 01:57:17,880 COORDINATORS AND THE TEAM THAT 2788 01:57:17,880 --> 01:57:23,360 IS INVOLVED IN OUTREACH. 2789 01:57:23,360 --> 01:57:25,040 DOLORES. 2790 01:57:25,040 --> 01:57:28,080 >> YES. 2791 01:57:28,080 --> 01:57:31,400 I BELIEVE AND THE RURAL AREAS 2792 01:57:31,400 --> 01:57:33,000 BECAUSE AGAIN BUILDING THAT 2793 01:57:33,000 --> 01:57:34,480 TRUST AND RELATIONSHIP WITH 2794 01:57:34,480 --> 01:57:36,160 FAMILIES BECAUSE WHEN YOU BRING 2795 01:57:36,160 --> 01:57:39,200 IN NEW INFORMATION THEY ARE NOT 2796 01:57:39,200 --> 01:57:40,520 REALLY QUITE SURE WHAT IS GOING 2797 01:57:40,520 --> 01:57:42,320 TO BE HAPPENING, WHAT IS GOING 2798 01:57:42,320 --> 01:57:42,520 ON. 2799 01:57:42,520 --> 01:57:45,840 AND I WANT TO MAKE A COMMENT -- 2800 01:57:45,840 --> 01:57:47,440 WITH THE PREVIOUS PERSON THAT 2801 01:57:47,440 --> 01:57:50,960 MADE THE COMMENT ABOUT TRYING TO 2802 01:57:50,960 --> 01:57:52,720 SOLVE REAL PROBLEMS AND THAT IS 2803 01:57:52,720 --> 01:57:57,040 TRUE BECAUSE IN RURAL AREAS IT'S 2804 01:57:57,040 --> 01:57:59,360 LIMITED SERVICES WHETHER IT'S IN 2805 01:57:59,360 --> 01:58:01,800 THE SCHOOL SYSTEM OR ADULT 2806 01:58:01,800 --> 01:58:04,000 SERVICES AND FAMILIES ARE JUST 2807 01:58:04,000 --> 01:58:06,000 TRYING TO GET THROUGH THE DAY 2808 01:58:06,000 --> 01:58:08,240 WITH THEIR FAMILY MEMBER WHO HAS 2809 01:58:08,240 --> 01:58:10,800 DOWN SYNDROME OR OTHER 2810 01:58:10,800 --> 01:58:11,240 DISABILITIES. 2811 01:58:11,240 --> 01:58:16,600 AND WANTING TO KNOW WHO, WHAT, 2812 01:58:16,600 --> 01:58:18,320 WHERE AND HOW AND WHY. 2813 01:58:18,320 --> 01:58:20,600 AND THE MAJORITY OF THE 2814 01:58:20,600 --> 01:58:24,120 INDIVIDUALS WITH DOWN SYNDROME 2815 01:58:24,120 --> 01:58:27,960 WITHIN NAVAJO NATION THAT I KNOW 2816 01:58:27,960 --> 01:58:29,960 PERSONALLY THEY ARE NONVERBAL. 2817 01:58:29,960 --> 01:58:32,200 IF THEY DO TALK IT'S VERY FEW 2818 01:58:32,200 --> 01:58:33,160 WORDS. 2819 01:58:33,160 --> 01:58:37,440 AND IT'S DUE TO SPEECH THERAPY. 2820 01:58:37,440 --> 01:58:39,000 LIMITED SERVICES. 2821 01:58:39,000 --> 01:58:41,320 AND GETTING THAT SUPPORT EARLY 2822 01:58:41,320 --> 01:58:44,080 ON FROM EARLY CHILDHOOD THROUGH 2823 01:58:44,080 --> 01:58:46,640 THE SYSTEM. 2824 01:58:46,640 --> 01:58:49,760 AND MY SON GOT SOME SERVICES 2825 01:58:49,760 --> 01:58:52,400 WHEN WAS AN INFANT AND TODDLER 2826 01:58:52,400 --> 01:58:55,040 BUT HE SPOKE A LITTLE BIT BUT AS 2827 01:58:55,040 --> 01:58:57,800 HE GOT OLDER HE WAS VERY 2828 01:58:57,800 --> 01:58:58,960 NONVERBAL. 2829 01:58:58,960 --> 01:59:01,680 HE WAS MORE FACIAL EXPRESSION, 2830 01:59:01,680 --> 01:59:02,120 POINTING. 2831 01:59:02,120 --> 01:59:05,960 AND DOING THINGS FOR HIMSELF. 2832 01:59:05,960 --> 01:59:08,600 AND AGAIN IT'S REACHING OUT TO 2833 01:59:08,600 --> 01:59:11,880 FAMILIES AND BUILDING THAT TRUST 2834 01:59:11,880 --> 01:59:13,400 THAT CONNECTION THAT ONE-ON-ONE 2835 01:59:13,400 --> 01:59:15,440 AND LETTING THEM KNOW WHAT IS 2836 01:59:15,440 --> 01:59:18,600 COMING UP AND WHAT IS HAPPENING. 2837 01:59:18,600 --> 01:59:20,800 I KNOW THAT WHAT I HAD DONE WITH 2838 01:59:20,800 --> 01:59:24,920 THE FAMILIES -- 2839 01:59:24,920 --> 01:59:27,160 >> THANK YOU AND WE APOLOGIZE 2840 01:59:27,160 --> 01:59:31,240 FOR THAT SLIGHT INTERRUPTION. 2841 01:59:31,240 --> 01:59:34,000 I DIDN'T WANT TO CUT YOU OFF IF 2842 01:59:34,000 --> 01:59:36,160 YOU WERE NOT DONE. 2843 01:59:36,160 --> 01:59:37,360 THANK YOU SO MUCH. 2844 01:59:37,360 --> 01:59:42,120 I APPRECIATE THAT. 2845 01:59:42,120 --> 01:59:44,880 MS. NEAL-HOWE. 2846 01:59:44,880 --> 01:59:46,800 >> HI, EVERYONE 2847 01:59:46,800 --> 01:59:49,480 SO YEAH AND I'M GOING TO USE 2848 01:59:49,480 --> 01:59:51,240 SOME EXISTING COMMUNITY MODELS. 2849 01:59:51,240 --> 01:59:53,480 THERE IS SOME EFFORTS OUT THERE 2850 01:59:53,480 --> 01:59:56,280 ALREADY THAT ARE DOING SOME 2851 01:59:56,280 --> 01:59:58,280 THINGS GOOD AND I'M GOING TO 2852 01:59:58,280 --> 01:59:59,680 POINT OUT BREAST CANCER. 2853 01:59:59,680 --> 02:00:02,560 WE SEE A LOT OF ACTIVITY AROUND 2854 02:00:02,560 --> 02:00:05,000 BREAST CANCER IN VARIOUS 2855 02:00:05,000 --> 02:00:06,120 COMMUNITIES AND THEY WORK. 2856 02:00:06,120 --> 02:00:07,280 THEY WORK. 2857 02:00:07,280 --> 02:00:10,360 I SEE THESE BREAST CANCER WALKS 2858 02:00:10,360 --> 02:00:11,760 BEING VERY DIVERSE. 2859 02:00:11,760 --> 02:00:13,200 OF COURSE IT'S GOING TO BE 2860 02:00:13,200 --> 02:00:14,640 SKEWED ONE WAY OR ANOTHER 2861 02:00:14,640 --> 02:00:17,160 DEPENDING ON WHERE THE WALK IS. 2862 02:00:17,160 --> 02:00:17,760 RIGHT? 2863 02:00:17,760 --> 02:00:20,200 BUT FROM WHAT I'VE SEEN AND WHAT 2864 02:00:20,200 --> 02:00:22,440 I'VE EXPERIENCED THEY SEEM TO BE 2865 02:00:22,440 --> 02:00:25,080 VERY DIVERSE AND WHAT THEY'VE 2866 02:00:25,080 --> 02:00:27,360 DONE IS THEY'VE DEVELOPED 2867 02:00:27,360 --> 02:00:28,280 CHAMPIONS WITHIN THE 2868 02:00:28,280 --> 02:00:28,760 COMMUNITIES. 2869 02:00:28,760 --> 02:00:31,120 THESE ARE VOLUNTEERS A LOT OF 2870 02:00:31,120 --> 02:00:31,320 THEM. 2871 02:00:31,320 --> 02:00:32,960 THEY ARE NOT PAID BUT I THINK 2872 02:00:32,960 --> 02:00:36,240 THERE IS A SENSE OF WHAT IS IN 2873 02:00:36,240 --> 02:00:37,040 IT FOR ME? 2874 02:00:37,040 --> 02:00:39,840 AND THEY ARE GETTING THAT 2875 02:00:39,840 --> 02:00:41,240 PERSONAL SATISFACTION. 2876 02:00:41,240 --> 02:00:43,760 WE'VE GOT TO MEET PEOPLE THERE 2877 02:00:43,760 --> 02:00:46,080 AS WELL AS WHAT OTHERS SAY 2878 02:00:46,080 --> 02:00:46,960 BEFORE ME. 2879 02:00:46,960 --> 02:00:48,960 MEET THE BASIC NEEDS FIRST. 2880 02:00:48,960 --> 02:00:51,400 IF FOLKS ARE NOT GETTING THE 2881 02:00:51,400 --> 02:00:54,040 SPEECH THERAPY SERVICES -- THAT 2882 02:00:54,040 --> 02:00:56,360 IS A BASIC NEED I THINK. 2883 02:00:56,360 --> 02:00:58,120 ESPECIALLY WHEN THERE ARE SOME 2884 02:00:58,120 --> 02:01:02,080 OF US THAT HAVE BEEN FORTUNATE 2885 02:01:02,080 --> 02:01:05,800 ENOUGH IN THAT WE HAVE ACCESS TO 2886 02:01:05,800 --> 02:01:06,200 SERVICES. 2887 02:01:06,200 --> 02:01:08,440 I WOULD LIKE TO SEE THE 2888 02:01:08,440 --> 02:01:09,680 RESEARCHERS SUPPORT SOME OF THE 2889 02:01:09,680 --> 02:01:10,920 EFFORTS THAT ARE ALREADY IN THE 2890 02:01:10,920 --> 02:01:13,920 COMMUNITY WHETHER IT'S 2891 02:01:13,920 --> 02:01:16,360 PEDIATRICIANS, THE DOWN SYNDROME 2892 02:01:16,360 --> 02:01:21,000 CLINICS, THE CHURCHES. 2893 02:01:21,000 --> 02:01:22,440 WHATEVER IS IN THE COMMUNITY 2894 02:01:22,440 --> 02:01:23,760 THAT PEOPLE ALREADY TRUST, 2895 02:01:23,760 --> 02:01:24,760 PARTNER WITH THEM. 2896 02:01:24,760 --> 02:01:26,800 I'M BIG ON COLLABORATION. 2897 02:01:26,800 --> 02:01:28,600 HUGE ON PARTNERSHIP AND I THINK 2898 02:01:28,600 --> 02:01:30,960 YOU COULD GET A LOT OUT OF DOING 2899 02:01:30,960 --> 02:01:34,760 THAT AND GETTING SOME QUICK -- 2900 02:01:34,760 --> 02:01:39,600 AND SPEED UP THE TRUST: 2901 02:01:39,600 --> 02:01:41,680 >> ABSOLUTELY PARTNERSHIP AND 2902 02:01:41,680 --> 02:01:44,120 CONTINUED ENGAGEMENT. 2903 02:01:44,120 --> 02:01:47,400 IT DOESN'T STOP AT THAT ONE. 2904 02:01:47,400 --> 02:01:50,960 CHIDANAND. 2905 02:01:50,960 --> 02:01:51,880 >> THANK YOU. 2906 02:01:51,880 --> 02:01:57,160 7 I THINK IT'S ALSO IMPORTANT TO 2907 02:01:57,160 --> 02:01:59,160 GET BACK TO CIRCLE BACK TO US 2908 02:01:59,160 --> 02:02:04,000 WITH THE OUTCOMES THAT ARE 2909 02:02:04,000 --> 02:02:06,080 EASILY UNDERSTANDABLE TO MAKE 2910 02:02:06,080 --> 02:02:11,360 SURE THAT OUR TIME IS WELL 2911 02:02:11,360 --> 02:02:12,480 SPENT. 2912 02:02:12,480 --> 02:02:14,480 WE JUGGLE SO MANY THINGS. 2913 02:02:14,480 --> 02:02:17,760 SO PRESSED FOR TIME AND DEVOTE 2914 02:02:17,760 --> 02:02:21,760 ONE OR TWO OR THREE HOURS FOR 2915 02:02:21,760 --> 02:02:28,320 SUCH INDIVIDUALS. 2916 02:02:28,320 --> 02:02:32,280 I ALSO HOPE THE PROGRAM COVER 2917 02:02:32,280 --> 02:02:33,800 ALL LEGAL RESIDENTS. 2918 02:02:33,800 --> 02:02:36,800 BECAUSE THE SENSE THAT I GOT IS 2919 02:02:36,800 --> 02:02:39,440 THAT ANY LEGAL RESIDENT WHO'S A 2920 02:02:39,440 --> 02:02:41,440 TAXPAYER SHOULD BE COVERED UNDER 2921 02:02:41,440 --> 02:02:43,280 THESE PROGRAMS. 2922 02:02:43,280 --> 02:02:45,440 BUT MOST OF ALL IT'S KNOWING 2923 02:02:45,440 --> 02:02:47,280 THAT YOUR TIME WAS WELL SPENT 2924 02:02:47,280 --> 02:02:52,320 AND THAT IT WAS A GOOD OUTCOME. 2925 02:02:52,320 --> 02:02:55,000 GETTING BACK TO US WITH THAT -- 2926 02:02:55,000 --> 02:02:58,120 WOULD BE GREATLY APPRECIATED. 2927 02:02:58,120 --> 02:03:00,120 >> SO DEFINITELY COMMUNICATING 2928 02:03:00,120 --> 02:03:02,600 NEEDS AND NOT TO CUT YOU OFF 2929 02:03:02,600 --> 02:03:03,400 PLEASE, SORRY 2930 02:03:03,400 --> 02:03:05,560 >> I WAS GOING TO ADD TO THAT -- 2931 02:03:05,560 --> 02:03:09,720 I THINK THE POINT MADE ABOUT 2932 02:03:09,720 --> 02:03:11,800 MEETING DIFFERENT SOCIOECONOMIC 2933 02:03:11,800 --> 02:03:13,840 NEEDS AS WELL AS LANGUAGE BASED 2934 02:03:13,840 --> 02:03:16,480 NEEDS THOSE ARE REALLY CRITICAL. 2935 02:03:16,480 --> 02:03:18,800 I SEE WE BELONG TO THE NETWORK 2936 02:03:18,800 --> 02:03:21,440 OF MONTGOMERY COUNTY HERE IN 2937 02:03:21,440 --> 02:03:24,000 MARYLAND. 2938 02:03:24,000 --> 02:03:26,720 AND WE ARE FORTUNATE ENOUGH THAT 2939 02:03:26,720 --> 02:03:28,840 IS A VERY DIVERSE GROUP AND IT 2940 02:03:28,840 --> 02:03:32,480 HAS A DUAL LANGUAGE PROGRAM SO 2941 02:03:32,480 --> 02:03:38,760 THAT IT MEETS HISPANIC NEEDS AND 2942 02:03:38,760 --> 02:03:41,320 THE EVENTS ARE COVERING BOTH 2943 02:03:41,320 --> 02:03:43,320 SPANISH AND ENGLISH WITH 2944 02:03:43,320 --> 02:03:44,520 TRANSLATION HAPPENING 2945 02:03:44,520 --> 02:03:45,120 FREQUENTLY. 2946 02:03:45,120 --> 02:03:47,360 BUT THAT IS A UNIQUE COMMUNITY 2947 02:03:47,360 --> 02:03:49,200 RELATIVE TO WHAT WE SEE AMONG 2948 02:03:49,200 --> 02:03:51,840 OTHERS. 2949 02:03:51,840 --> 02:03:54,080 NATIONALLY BUT ALSO I THINK THAT 2950 02:03:54,080 --> 02:03:57,160 WE SEE EVEN WITHIN OUR VERY -- 2951 02:03:57,160 --> 02:04:00,000 WELL RESOURCED COMMUNITY -- HIGH 2952 02:04:00,000 --> 02:04:02,840 LEVELS OF INEQUALITY AND ACCESS 2953 02:04:02,840 --> 02:04:05,360 EVEN IN THE SCHOOL THAT OUR SON 2954 02:04:05,360 --> 02:04:05,920 ATTENDS. 2955 02:04:05,920 --> 02:04:08,960 AVENUE IF YOU'RE NOT A WELL 2956 02:04:08,960 --> 02:04:11,320 RESOURCED SELF-ADVOCATE GETTING 2957 02:04:11,320 --> 02:04:12,960 THE LEVELS IN ACCESS THAT YOU 2958 02:04:12,960 --> 02:04:14,960 NEED ARE REALLY CHALLENGING. 2959 02:04:14,960 --> 02:04:18,400 SO WE SEE IT AT CLINICS WITH OUR 2960 02:04:18,400 --> 02:04:18,840 SON. 2961 02:04:18,840 --> 02:04:20,360 WE SEE IT WHEN HE GOES TO 2962 02:04:20,360 --> 02:04:20,880 SCHOOL. 2963 02:04:20,880 --> 02:04:23,360 WHEN PEOPLE ARE ABLE TO ADVOCATE 2964 02:04:23,360 --> 02:04:25,040 FOR THEMSELVES THEY GET THE 2965 02:04:25,040 --> 02:04:27,920 RESOURCES THEY NEED BUT WITHOUT 2966 02:04:27,920 --> 02:04:30,560 PROVISION AND EXTRA SUPPORT 2967 02:04:30,560 --> 02:04:33,760 SUPPLIED TO SCHOOLS AS WELL AS 2968 02:04:33,760 --> 02:04:39,480 TO CLINICS TO HELP REACH UNDER 2969 02:04:39,480 --> 02:04:41,800 SERVED POPULATIONS I THINK THEY 2970 02:04:41,800 --> 02:04:43,000 GET LEFT OUT. 2971 02:04:43,000 --> 02:04:46,440 I'M ALSO A SENIOR EDUCATION 2972 02:04:46,440 --> 02:04:48,240 SPECIALIST WITH THE WORLD BANK 2973 02:04:48,240 --> 02:04:50,120 AND WE STRUGGLE WITH SOME OF THE 2974 02:04:50,120 --> 02:04:50,880 SAME ISSUES. 2975 02:04:50,880 --> 02:04:53,120 WE HAVE DISABILITY AND INCLUSION 2976 02:04:53,120 --> 02:04:53,840 PRACTICE. 2977 02:04:53,840 --> 02:05:00,240 AND AS OF THIS YEAR WE'RE IN LOW 2978 02:05:00,240 --> 02:05:02,880 AND MIDDLE INCOME COUNTRIES ARE 2979 02:05:02,880 --> 02:05:05,440 REQUIRED TO HAVE A SPECIAL 2980 02:05:05,440 --> 02:05:07,640 MANDATE OR SPECIAL COMPONENT 2981 02:05:07,640 --> 02:05:09,560 FOCUSED ON DISABILITY AND 2982 02:05:09,560 --> 02:05:10,280 INCLUSION. 2983 02:05:10,280 --> 02:05:12,840 AS INDIVIDUALS WHO DESIGN THESE 2984 02:05:12,840 --> 02:05:14,120 OPERATIONS WE OFTEN DON'T KNOW 2985 02:05:14,120 --> 02:05:16,760 WHAT WE'RE DOING AND WE HAVE TO 2986 02:05:16,760 --> 02:05:18,400 PULL ON RESEARCH FROM VARIOUS 2987 02:05:18,400 --> 02:05:18,840 COMMUNITIES. 2988 02:05:18,840 --> 02:05:21,720 I THINK THERE IS A LOT OUT THERE 2989 02:05:21,720 --> 02:05:27,440 ON SERVICING COMMUNITIES IN 2990 02:05:27,440 --> 02:05:30,800 SOCIOLOGY AND IN THE PSYCHOLOGY 2991 02:05:30,800 --> 02:05:32,080 LITERATURE AND IN TERMS OF 2992 02:05:32,080 --> 02:05:34,560 GETTING ACCESS TO SERVICES AND I 2993 02:05:34,560 --> 02:05:37,240 THINK THERE IS A LOT OF CROSS 2994 02:05:37,240 --> 02:05:38,240 DISCIPLINARY RESEARCH THAT CAN 2995 02:05:38,240 --> 02:05:40,080 BE DONE THERE. 2996 02:05:40,080 --> 02:05:42,320 >> THAT IS A GREAT POINT AND I 2997 02:05:42,320 --> 02:05:50,640 THINK IT REINFORCES WHAT 2998 02:05:50,640 --> 02:05:53,480 SHAUNTEL MENTIONED. 2999 02:05:53,480 --> 02:05:55,680 WHERE WE SEE IT SUCCESSFULLY 3000 02:05:55,680 --> 02:05:56,360 APPLIED. 3001 02:05:56,360 --> 02:06:00,120 KATE. 3002 02:06:00,120 --> 02:06:00,800 >> THANK YOU. 3003 02:06:00,800 --> 02:06:02,480 I THINK ONE OF THE THINGS THAT 3004 02:06:02,480 --> 02:06:04,800 WHEN WE LOOK AT BUILDING TRUST 3005 02:06:04,800 --> 02:06:06,480 WITHIN COMMUNITY AND I'M GOING 3006 02:06:06,480 --> 02:06:09,240 TO TRY TO SPEAK SLOW FOR THE 3007 02:06:09,240 --> 02:06:10,240 INTERPRETERS IS UNDERSTANDING 3008 02:06:10,240 --> 02:06:14,080 MANY OF OUR PEOPLE IN RURAL AND 3009 02:06:14,080 --> 02:06:15,800 UNDERSERVED COMMUNITIES ARE 3010 02:06:15,800 --> 02:06:17,560 DEALING WITH I WOULD CALL A 3011 02:06:17,560 --> 02:06:19,920 COLLECTIVE TRAUMA BECAUSE OF 3012 02:06:19,920 --> 02:06:21,280 BASED ON THEIR EXPERIENCES THAT 3013 02:06:21,280 --> 02:06:24,800 THEY ARE GETTING AT AN EDUCATION 3014 02:06:24,800 --> 02:06:28,440 LEVEL AND MEDICAL LEVEL THROUGH 3015 02:06:28,440 --> 02:06:31,080 CLINICIANS AND EDUCATORS 3016 02:06:31,080 --> 02:06:32,880 ESSENTIALLY LACK OF EXPOSURE AND 3017 02:06:32,880 --> 02:06:34,520 WHEN YOU ASK WHAT I MEAN BY 3018 02:06:34,520 --> 02:06:35,280 THAT? 3019 02:06:35,280 --> 02:06:38,040 WHEN YOU HAVE AS A PARENT PEOPLE 3020 02:06:38,040 --> 02:06:40,120 SAY TO YOU THINGS LIKE FROM A 3021 02:06:40,120 --> 02:06:41,520 MEDICAL PROFESSIONAL IT'S JUST 3022 02:06:41,520 --> 02:06:42,400 DOWN SYNDROME. 3023 02:06:42,400 --> 02:06:46,760 7 OR WHEN YOU HAVE AN EDUCATOR 3024 02:06:46,760 --> 02:06:49,360 SAY TO ME AND TALKING UNIVERSAL 3025 02:06:49,360 --> 02:06:51,760 DESIGN OF LEARNING OR 3026 02:06:51,760 --> 02:06:53,360 ACCOMMODATIONS AND THEY SAY YOU 3027 02:06:53,360 --> 02:06:55,920 EXPECT ME TO DO THIS FOR JUST 3028 02:06:55,920 --> 02:06:56,800 ONE CHILD. 3029 02:06:56,800 --> 02:06:57,200 NO. 3030 02:06:57,200 --> 02:07:00,400 I EXPECT YOU TO DO THIS FOR 3031 02:07:00,400 --> 02:07:04,040 EVERY CHILD: OR WHEN THEY SAY 3032 02:07:04,040 --> 02:07:06,000 WHAT WAS BEST PRACTICE ANY WAY? 3033 02:07:06,000 --> 02:07:07,520 THESE ARE THINGS THAT PEOPLE IN 3034 02:07:07,520 --> 02:07:09,520 YOUR RURAL AND UNDERSERVED 3035 02:07:09,520 --> 02:07:11,880 COMMUNITIES ARE SEEING ON A 3036 02:07:11,880 --> 02:07:15,720 DAILY BASES SO WHEN WE COME IN 3037 02:07:15,720 --> 02:07:17,880 PROFESSIONALLY WHETHER IT'S 3038 02:07:17,880 --> 02:07:19,320 ACADEMIC OR MEDICAL RESEARCH 3039 02:07:19,320 --> 02:07:21,000 OPPORTUNITY AND WE SUDDENLY WANT 3040 02:07:21,000 --> 02:07:23,120 THEM TO PARTICIPATE WE FIRST 3041 02:07:23,120 --> 02:07:24,960 HAVE TO AGAIN BUILD THAT TRUST 3042 02:07:24,960 --> 02:07:27,200 AND ONE OF THE THINGS THAT I 3043 02:07:27,200 --> 02:07:30,400 WILL SAY AND THANK YOU 3044 02:07:30,400 --> 02:07:32,320 DR. McCORMICK FOR COMING TO MY 3045 02:07:32,320 --> 02:07:32,720 COMMUNITY. 3046 02:07:32,720 --> 02:07:35,200 THANK YOU SHAUNTEL FOR COMING TO 3047 02:07:35,200 --> 02:07:38,320 MY COMMUNITY. 3048 02:07:38,320 --> 02:07:40,840 THANK YOU JOAQUIN FOR COMING TO 3049 02:07:40,840 --> 02:07:42,480 THE NAVAJO NATION BECAUSE ONE OF 3050 02:07:42,480 --> 02:07:44,520 THE FIRST THINGS, I UNDERSTAND 3051 02:07:44,520 --> 02:07:48,520 IT'S IMPOSSIBLE TO VISIT EVERY 3052 02:07:48,520 --> 02:07:50,600 UNDERSERVED COMMUNITY BUT WE 3053 02:07:50,600 --> 02:07:52,520 COMMUNICATE AMONG EACH OTHER AND 3054 02:07:52,520 --> 02:07:55,120 WE DO BEGIN TO SHARE THAT OUT 3055 02:07:55,120 --> 02:07:56,960 AND ONE OF THE BEST WAYS SINCE 3056 02:07:56,960 --> 02:07:58,640 WE'RE DEALING WITH THAT 3057 02:07:58,640 --> 02:08:00,200 COLLECTIVE TRAUMAS WHEN WE GET 3058 02:08:00,200 --> 02:08:04,440 AN OPPORTUNITY TO MEET A 3059 02:08:04,440 --> 02:08:12,560 DR. ANDY McCORMICK OR A 3060 02:08:12,560 --> 02:08:15,120 JOAQUIN ESPINOZA. 3061 02:08:15,120 --> 02:08:17,360 IT DOES MAKE A DIFFERENCE 3062 02:08:17,360 --> 02:08:19,880 BECAUSE WHEN YOU'RE LIVING IN AN 3063 02:08:19,880 --> 02:08:21,360 UNDERSERVED AREA OR RURAL 3064 02:08:21,360 --> 02:08:24,000 POPULATION AND THE DIE AT 3065 02:08:24,000 --> 02:08:29,080 NARRATIVE IS SO LIMITED * 3066 02:08:29,080 --> 02:08:32,040 BECAUSE OF LACK OF AWARENESS OF 3067 02:08:32,040 --> 02:08:32,960 POSSIBILITIES FOR INDIVIDUALS 3068 02:08:32,960 --> 02:08:36,240 WITH DOWN SYNDROME IT CAN BECOME 3069 02:08:36,240 --> 02:08:38,080 OVERWHELMING FOR MANY, MANY 3070 02:08:38,080 --> 02:08:40,880 PEOPLE AND THAT HINDERS THEIR 3071 02:08:40,880 --> 02:08:42,880 ABILITY BUT IT IS POSSIBLE TO 3072 02:08:42,880 --> 02:08:44,640 REBUILD THAT BRIDGE OF TRUST BY 3073 02:08:44,640 --> 02:08:47,080 HELPING THEM KNOW THERE IS A 3074 02:08:47,080 --> 02:08:49,520 LARGER COMMUNITY OUT THERE THAT 3075 02:08:49,520 --> 02:08:52,120 TRULY DOES UNDERSTAND WHAT BEST 3076 02:08:52,120 --> 02:08:52,880 PRACTICE. 3077 02:08:52,880 --> 02:08:54,920 THAT UNDERSTANDS EACH MEDICAL 3078 02:08:54,920 --> 02:08:56,760 COMPONENT OF DOWN SYNDROME IS 3079 02:08:56,760 --> 02:08:58,160 UNIQUE TO EACH INDIVIDUAL WITH 3080 02:08:58,160 --> 02:08:59,920 DOWN SYNDROME. 3081 02:08:59,920 --> 02:09:02,960 AND I THINK THOSE THINGS TRULY 3082 02:09:02,960 --> 02:09:05,640 BEGIN TO HELP EXPONENTIALLY. 3083 02:09:05,640 --> 02:09:07,560 AVENUE ACTUALLY I KNOW IT DOES 3084 02:09:07,560 --> 02:09:09,120 BECAUSE FOR THE LAST 12 YEARS 3085 02:09:09,120 --> 02:09:11,200 I'VE SEEN THE DIFFERENCE THAT 3086 02:09:11,200 --> 02:09:12,480 MANY PEOPLE HAVE MADE BECAUSE 3087 02:09:12,480 --> 02:09:14,480 WE'VE MANAGED TO GET THEM INTO 3088 02:09:14,480 --> 02:09:17,240 OUR RURAL COMMUNITY AND BEGAN TO 3089 02:09:17,240 --> 02:09:19,440 ALTER THE DIALOGUE. 3090 02:09:19,440 --> 02:09:21,680 >> THANK YOU SO MUCH. 3091 02:09:21,680 --> 02:09:30,920 AND I SEE DR. CHAPLAIN HAS MADE 3092 02:09:30,920 --> 02:09:32,960 A COUPLE OF COMMENTS. 3093 02:09:32,960 --> 02:09:36,400 BEFORE I GO ON TO THE 3094 02:09:36,400 --> 02:09:40,720 RESEARCHERS -- THE QUESTION IS 3095 02:09:40,720 --> 02:09:41,840 SIMILAR. 3096 02:09:41,840 --> 02:09:43,640 DR. CHAPLIN IF YOU WOULD LIKE TO 3097 02:09:43,640 --> 02:09:44,840 SAY SOMETHING OUT LOUD 3098 02:09:44,840 --> 02:09:47,520 >> I WOULD LIKE TO MAKE THE 3099 02:09:47,520 --> 02:09:49,640 POINT THAT WHAT IS CRUCIAL IS 3100 02:09:49,640 --> 02:09:51,200 NOT TO EXPECT THAT YOU CAN GO TO 3101 02:09:51,200 --> 02:09:55,680 A COMMUNITY AND SAY WE WANT YOUR 3102 02:09:55,680 --> 02:09:55,880 TRUST. 3103 02:09:55,880 --> 02:09:57,240 AND WE CAN BE TRUSTED. 3104 02:09:57,240 --> 02:09:59,200 IT TAKES YEARS TO DEVELOP TRUST. 3105 02:09:59,200 --> 02:10:03,920 YOU HAVE TO HAVE PERSEVERANCE 3106 02:10:03,920 --> 02:10:05,680 AND PATIENCE AND YOUR NEED TO 3107 02:10:05,680 --> 02:10:08,800 ENSURE THAT EARLY ON YOU ADDRESS 3108 02:10:08,800 --> 02:10:10,280 QUESTIONS THAT THE COMMUNITY 3109 02:10:10,280 --> 02:10:13,240 THINKS ARE IMPORTANT TO ADDRESS. 3110 02:10:13,240 --> 02:10:15,240 LET THEM DRIVE SOME OF THE EARLY 3111 02:10:15,240 --> 02:10:16,760 PARTS OF THE RESEARCH PROGRAM. 3112 02:10:16,760 --> 02:10:19,560 SPEND LOTS OF TIME AND GET TO 3113 02:10:19,560 --> 02:10:21,640 KNOW MEMBERS OF THE COMMUNITY SO 3114 02:10:21,640 --> 02:10:23,880 THEY CAN DEVELOP TRUST IN YOU 3115 02:10:23,880 --> 02:10:25,760 AND BE SURE TO INCLUDE MEMBERS 3116 02:10:25,760 --> 02:10:27,600 OF THE COMMUNITY IN THE CORE OF 3117 02:10:27,600 --> 02:10:29,560 YOUR RESEARCH TEAM SO THAT THEY 3118 02:10:29,560 --> 02:10:33,400 ARE IN FACT PART OF THE PROGRAM. 3119 02:10:33,400 --> 02:10:35,400 THIS COMES FROM MY YEARS ON THE 3120 02:10:35,400 --> 02:10:37,320 FACULTY AT THE UNIVERSITY OF 3121 02:10:37,320 --> 02:10:40,440 ALABAMA AT BIRMINGHAM WHICH HAS 3122 02:10:40,440 --> 02:10:42,600 HAD A SUCCESSFUL MINORITY HEALTH 3123 02:10:42,600 --> 02:10:43,080 RESEARCH PROGRAM. 3124 02:10:43,080 --> 02:10:45,400 BUT A SUCCESSFUL ONE THAT IS 3125 02:10:45,400 --> 02:10:48,280 BASED ON YEARS OF WORKING WITH 3126 02:10:48,280 --> 02:10:49,800 THE COMMUNITY AND INVOLVING 3127 02:10:49,800 --> 02:10:51,720 PEOPLE FROM THE COMMUNITY. 3128 02:10:51,720 --> 02:10:54,840 AND THE RESEARCH PROCESS AND 3129 02:10:54,840 --> 02:10:57,560 BEING SURE THAT THE RESEARCH 3130 02:10:57,560 --> 02:11:01,880 TEAMS REALLY HAVE A SUBSTANTIAL 3131 02:11:01,880 --> 02:11:04,280 NUMBER OF PEOPLE THAT LOOK LIKE 3132 02:11:04,280 --> 02:11:07,400 AND SPOKE LIKE THE PEOPLE THAT 3133 02:11:07,400 --> 02:11:09,440 ARE THE RESEARCH SUBJECTS 3134 02:11:09,440 --> 02:11:09,960 >> GREAT POINT. 3135 02:11:09,960 --> 02:11:11,520 MAKING SURE THAT REPRESENTATION 3136 02:11:11,520 --> 02:11:13,880 IS NOT ONLY AND I THINK THIS IS 3137 02:11:13,880 --> 02:11:16,440 THROUGHOUT TODAY'S WORKSHOP AND 3138 02:11:16,440 --> 02:11:18,120 SOMETHING THAT WE'VE HEARD MANY 3139 02:11:18,120 --> 02:11:23,000 TIMES IS THE STUDY PARTICIPANTS 3140 02:11:23,000 --> 02:11:24,760 SHOULD LOOK LIKE THE STUDY 3141 02:11:24,760 --> 02:11:26,600 RESEARCH TEAM AS WELL. 3142 02:11:26,600 --> 02:11:28,680 AND VICE VERSA. 3143 02:11:28,680 --> 02:11:33,880 DO WE HAVE ANY OTHER? 3144 02:11:33,880 --> 02:11:35,680 >> YES. 3145 02:11:35,680 --> 02:11:38,680 HOW CAN WE BUILD TRUST? 3146 02:11:38,680 --> 02:11:41,000 EVERYONE HERE AGREED THAT SHOULD 3147 02:11:41,000 --> 02:11:42,840 BE CONDUCTED ANY RESEARCH SHOULD 3148 02:11:42,840 --> 02:11:45,200 BE CONDUCTED IN THEIR NATIVE 3149 02:11:45,200 --> 02:11:46,200 LANGUAGE. 3150 02:11:46,200 --> 02:11:48,320 IN OUR CASE SHOULD BE CONDUCTED 3151 02:11:48,320 --> 02:11:51,360 IN SPANISH. 3152 02:11:51,360 --> 02:11:58,040 ALSO SHOULD BE CLEAR. 3153 02:11:58,040 --> 02:11:59,600 THE OBJECTIVE SHOULD BE CLEAR 3154 02:11:59,600 --> 02:12:02,480 AND THE RESULTS SHOULD BE 3155 02:12:02,480 --> 02:12:05,320 AVAILABLE FOR THE COMMUNITY. 3156 02:12:05,320 --> 02:12:10,080 AND ALSO WITH RESPECT TO THE 3157 02:12:10,080 --> 02:12:12,160 AUDIENCE AND ALL OF THE PEOPLE 3158 02:12:12,160 --> 02:12:14,480 ON THE PANEL AND I WOULD LIKE TO 3159 02:12:14,480 --> 02:12:15,320 COMMENT THAT PUERTO RICO HAS 3160 02:12:15,320 --> 02:12:18,400 BEEN USED IN THE PAST FOR 3161 02:12:18,400 --> 02:12:21,760 TESTING AND IT'S EMBEDDED IN THE 3162 02:12:21,760 --> 02:12:27,360 MIND OF SOME PERSON AND WHEN A 3163 02:12:27,360 --> 02:12:29,600 RESEARCH STARTED ON OUR ISLAND 3164 02:12:29,600 --> 02:12:34,880 THE OBJECTIVES SHOULD BE CLEAR. 3165 02:12:34,880 --> 02:12:37,720 AND THE PURPLES SHOULD BE CLEAR 3166 02:12:37,720 --> 02:12:41,240 AND EVERYONE UNDERSTANDS THAT WE 3167 02:12:41,240 --> 02:12:42,880 WILL HAVE SOME BENEFIT FOR OUR 3168 02:12:42,880 --> 02:12:43,720 COMMUNITY. 3169 02:12:43,720 --> 02:12:48,400 AND IT'S NOT ONLY HERE, THE 3170 02:12:48,400 --> 02:12:50,120 STUDY SHOULD BE CONDUCTED IN 3171 02:12:50,120 --> 02:12:52,840 OTHER PLACES IN THE SAME WAY. 3172 02:12:52,840 --> 02:12:54,120 THAT WILL BE CONDUCTED RIGHT 3173 02:12:54,120 --> 02:12:56,160 HERE. 3174 02:12:56,160 --> 02:12:58,400 AND AS A FINAL COMMENT I WILL 3175 02:12:58,400 --> 02:13:04,600 SAY THAT AS A LATINO MOTHERS ARE 3176 02:13:04,600 --> 02:13:08,080 VERY IMPORTANT PERSON IN THE 3177 02:13:08,080 --> 02:13:11,520 EDUCATION OF HAVE OUR CHILD IN 3178 02:13:11,520 --> 02:13:14,600 THE HEALTH AND IN THE FEELINGS. 3179 02:13:14,600 --> 02:13:16,400 THIS IS A MESSAGE FOR THE 3180 02:13:16,400 --> 02:13:19,760 RESEARCHERS THAT YOU SHOULD TAKE 3181 02:13:19,760 --> 02:13:21,600 CARE OF MOTHERS IN EVERY 3182 02:13:21,600 --> 02:13:22,120 RESEARCH IN THE LATINO 3183 02:13:22,120 --> 02:13:22,840 COMMUNITY. 3184 02:13:22,840 --> 02:13:26,200 THEY ARE THE PRINCIPLE AND THE 3185 02:13:26,200 --> 02:13:31,400 MOST IMPORTANT PERSON IN ONE 3186 02:13:31,400 --> 02:13:32,160 DOWN SYNDROME PERSON. 3187 02:13:32,160 --> 02:13:34,400 THANK YOU. 3188 02:13:34,400 --> 02:13:34,840 >> THANK YOU. 3189 02:13:34,840 --> 02:13:36,040 I APPRECIATE IT. 3190 02:13:36,040 --> 02:13:38,440 SO WE'LL GO TO THE NEXT SLIDE. 3191 02:13:38,440 --> 02:13:40,240 AND THIS WILL BE THE QUESTION 3192 02:13:40,240 --> 02:13:42,120 AND I BELIEVE THE FINAL QUESTION 3193 02:13:42,120 --> 02:13:43,760 FOR THE RESEARCHERS. 3194 02:13:43,760 --> 02:13:46,440 AND THEN WE'LL DEFINITELY OPEN 3195 02:13:46,440 --> 02:13:49,080 IT UP TO THE LARGER GROUP IF 3196 02:13:49,080 --> 02:13:51,720 THERE ARE OTHER COMMENTS OR 3197 02:13:51,720 --> 02:13:52,920 FEEDBACK OR POINTS THEY WOULD 3198 02:13:52,920 --> 02:13:54,480 LIKE TO SHARE. 3199 02:13:54,480 --> 02:13:57,280 >> HEY, ERIKA -- 3200 02:13:57,280 --> 02:13:59,560 >> WAS THAT THE LAST SLIDE. 3201 02:13:59,560 --> 02:14:01,080 >> NO WORRIES. 3202 02:14:01,080 --> 02:14:06,800 I'LL ASK THE SAME QUESTION. 3203 02:14:06,800 --> 02:14:10,200 WE'LL USE THE SAME QUESTION TO 3204 02:14:10,200 --> 02:14:12,400 OUR RESEARCHERS. 3205 02:14:12,400 --> 02:14:14,560 AND I KNOW A LOT OF THIS HAS 3206 02:14:14,560 --> 02:14:15,640 BEEN SAID ALREADY. 3207 02:14:15,640 --> 02:14:17,120 SO IF THERE IS ANYTHING NEW THAT 3208 02:14:17,120 --> 02:14:18,680 YOU WOULD LIKE TO ADD THAT YOU 3209 02:14:18,680 --> 02:14:20,720 THINK THERE ARE WAYS THAT WE CAN 3210 02:14:20,720 --> 02:14:23,400 BUILD TRUST WITHIN THE COMMUNITY 3211 02:14:23,400 --> 02:14:25,000 AND THE COMMUNITY IN THIS CASE 3212 02:14:25,000 --> 02:14:28,320 MAY ALSO EXTEND TO THE RESEARCH 3213 02:14:28,320 --> 02:14:33,680 COMMUNITY. 3214 02:14:33,680 --> 02:14:40,080 DR. SPINAZZI. 3215 02:14:40,080 --> 02:14:41,640 >> SHOW UP TO YOUR COMMUNITY 3216 02:14:41,640 --> 02:14:44,120 JUST LIKE YOU'RE INVITING THEM 3217 02:14:44,120 --> 02:14:45,920 TO SHOW UP FOR OUR RESEARCH 3218 02:14:45,920 --> 02:14:47,320 EFFORTS. 3219 02:14:47,320 --> 02:14:52,080 TAKE TIME TO HOLD EDUCATIONAL 3220 02:14:52,080 --> 02:14:52,440 OPPORTUNITIES. 3221 02:14:52,440 --> 02:14:55,520 WHETHER IT'S Q&A ON HEALTH 3222 02:14:55,520 --> 02:14:58,400 ISSUES OR EDUCATIONAL ISSUES. 3223 02:14:58,400 --> 02:15:01,920 I GO TO MY PATIENT'S IP MEETINGS 3224 02:15:01,920 --> 02:15:03,840 AND THAT MEANS SO MUCH BECAUSE 3225 02:15:03,840 --> 02:15:06,440 THEY KNOW I'M IN THEIR CORNER 3226 02:15:06,440 --> 02:15:08,040 NOT JUST FROM A MEDICAL 3227 02:15:08,040 --> 02:15:08,560 STANDPOINT. 3228 02:15:08,560 --> 02:15:10,560 I NEVER FILL OUT A FORM THAT HAS 3229 02:15:10,560 --> 02:15:13,160 TO DO WITH VISIBILITY BENEFITS 3230 02:15:13,160 --> 02:15:16,320 WITHOUT ATTACHING A LONG LETTER 3231 02:15:16,320 --> 02:15:17,760 THAT INCREASES THEIR CHANCES OF 3232 02:15:17,760 --> 02:15:18,880 GETTING THE BENEFIT. 3233 02:15:18,880 --> 02:15:21,000 SHOWING UP FOR THEM IN THESE 3234 02:15:21,000 --> 02:15:25,120 WAYS MEANS THAT THEY ARE MORE 3235 02:15:25,120 --> 02:15:27,240 LIKELY TO TRUST THAT WE'RE NOT 3236 02:15:27,240 --> 02:15:28,600 THERE TO USE THEM. 3237 02:15:28,600 --> 02:15:29,480 RIGHT? 3238 02:15:29,480 --> 02:15:31,880 YOU'RE NOT THERE TO USE THEM AND 3239 02:15:31,880 --> 02:15:34,000 ABUSE THEM THE WAY THAT 3240 02:15:34,000 --> 02:15:34,600 UNDERSERVED COMMUNITIES HAVE 3241 02:15:34,600 --> 02:15:36,720 BEEN USED AND ABUSED BY RESEARCH 3242 02:15:36,720 --> 02:15:39,120 IN THE PAST. 3243 02:15:39,120 --> 02:15:41,760 WHEN IT FEELS APPROPRIATE I TALK 3244 02:15:41,760 --> 02:15:43,760 ABOUT SYSTEMATIC RACISM IN MY 3245 02:15:43,760 --> 02:15:47,120 VISITS AND I ASK QUESTIONS ABOUT 3246 02:15:47,120 --> 02:15:50,320 HOW THEIR EXPERIENCE IS AROUND 3247 02:15:50,320 --> 02:15:51,440 INTERFACING WITH THE HEALTH 3248 02:15:51,440 --> 02:15:53,000 SYSTEM, THE EDUCATIONAL SYSTEM 3249 02:15:53,000 --> 02:15:57,200 AND I THINK THAT IS SO NECESSARY 3250 02:15:57,200 --> 02:15:59,200 TO EVEN BROACH CONVERSATIONS 3251 02:15:59,200 --> 02:16:00,400 AROUND RESEARCH. 3252 02:16:00,400 --> 02:16:02,440 BECAUSE NOT EVEN TOUCHING THAT 3253 02:16:02,440 --> 02:16:05,600 POINT WHEN THIS IS SUCH A HUGE 3254 02:16:05,600 --> 02:16:08,160 REASON FOR NOT HAVING TRUST IN 3255 02:16:08,160 --> 02:16:09,680 THE RESEARCH PROCESS IS KIND OF 3256 02:16:09,680 --> 02:16:11,760 NOT ADDRESSING THE ELEPHANT IN 3257 02:16:11,760 --> 02:16:16,280 THE ROOM. 3258 02:16:16,280 --> 02:16:18,160 AND ONE THING THAT HAS BEEN SAID 3259 02:16:18,160 --> 02:16:21,680 OVER AND OVER IS THAT 3260 02:16:21,680 --> 02:16:22,200 LONGITUDINAL RELATIONSHIP. 3261 02:16:22,200 --> 02:16:24,200 THIS IS NOT A ONE AND DONE. 3262 02:16:24,200 --> 02:16:26,480 MOST OF US DON'T TRUST SOMEONE 3263 02:16:26,480 --> 02:16:27,400 WE'VE JUST MET. 3264 02:16:27,400 --> 02:16:31,040 WE TRUST PEOPLE BECAUSE OF THOSE 3265 02:16:31,040 --> 02:16:32,200 ONGOING RELATIONSHIPS THAT BUILD 3266 02:16:32,200 --> 02:16:33,640 THAT KIND OF TRUST. 3267 02:16:33,640 --> 02:16:36,480 SO ANYTHING THAT IS A TOUCH AND 3268 02:16:36,480 --> 02:16:41,360 GO, LET ME USE YOU FOR DATA AND 3269 02:16:41,360 --> 02:16:43,280 THEN LEAVE IS NOT AS SUCCESSFUL. 3270 02:16:43,280 --> 02:16:45,800 AND LAST, LAST, IF ANY RESEARCH 3271 02:16:45,800 --> 02:16:50,760 HAS TO DO WITH ANY SORT OF 3272 02:16:50,760 --> 02:16:52,760 INTERVENTION, SERVICE, WE NEED 3273 02:16:52,760 --> 02:16:54,760 TO NOT ONLY SHARE BACK THE 3274 02:16:54,760 --> 02:16:57,280 RESULTS BUT THEN ADVOCATE HARD 3275 02:16:57,280 --> 02:16:59,440 FOR WHATEVER THAT SERVICES THAT 3276 02:16:59,440 --> 02:17:02,160 HAS BEEN PROVEN TO WORK TO BE 3277 02:17:02,160 --> 02:17:04,120 THEN AVAILABLE TO THE PATIENT 3278 02:17:04,120 --> 02:17:05,840 THROUGH INSURANCE COVERAGE AS 3279 02:17:05,840 --> 02:17:07,840 OPPOSED TO BEING SOME MAGICAL 3280 02:17:07,840 --> 02:17:09,720 UNICORN THING THAT THEY CAN ONLY 3281 02:17:09,720 --> 02:17:11,120 GET THROUGH RESEARCH. 3282 02:17:11,120 --> 02:17:14,040 IF I PROVE THAT ACCESS TO AUGUST 3283 02:17:14,040 --> 02:17:16,560 MEN STATE I HAVE COMMUNICATION 3284 02:17:16,560 --> 02:17:18,360 FOR SOMEONE WITH DOWN SYNDROME 3285 02:17:18,360 --> 02:17:20,080 INCREASES THEIR EXPRESSIVE 3286 02:17:20,080 --> 02:17:23,400 ABILITIES AND THEIR BEHAVIOR AND 3287 02:17:23,400 --> 02:17:24,680 WHATEVER ELSE AND THEIR 3288 02:17:24,680 --> 02:17:26,480 WELL-BEING IF I PROVE THAT THEN 3289 02:17:26,480 --> 02:17:29,000 I BETTER SHOW UP AND GO TO BAT 3290 02:17:29,000 --> 02:17:31,200 FOR MY PATIENTS TO MAKE SURE 3291 02:17:31,200 --> 02:17:32,760 THAT THIS IS SOMETHING THAT THEY 3292 02:17:32,760 --> 02:17:34,280 CAN ACTUALLY GET. 3293 02:17:34,280 --> 02:17:35,640 WHETHER IT'S THROUGH INSURANCE 3294 02:17:35,640 --> 02:17:37,280 OR THROUGH THE SCHOOL. 3295 02:17:37,280 --> 02:17:41,040 AS OPPOSED TO RIGHT NOW THE 3296 02:17:41,040 --> 02:17:43,360 NERVE STIMULATOR IF IT'S NOT 3297 02:17:43,360 --> 02:17:44,520 THROUGH INSURANCE IF YOU HAVE 3298 02:17:44,520 --> 02:17:46,120 MEDICAID YOU'RE NOT GOING TO GET 3299 02:17:46,120 --> 02:17:48,760 IT AND THAT IS SO DISAPPOINTING. 3300 02:17:48,760 --> 02:17:50,760 SO BALANCING THE RESEARCH 3301 02:17:50,760 --> 02:17:52,680 FINDINGS WITH THE ADVOCACY TO 3302 02:17:52,680 --> 02:17:54,760 MAKE SURE THAT WE DON'T JUST 3303 02:17:54,760 --> 02:17:56,720 KNOW ABOUT SOMETHING THAT IS 3304 02:17:56,720 --> 02:17:59,480 HELPFUL, WE HAVE ACCESS TO IT, 3305 02:17:59,480 --> 02:18:00,320 TOO. 3306 02:18:00,320 --> 02:18:01,880 >> GREAT POINT. 3307 02:18:01,880 --> 02:18:04,040 LOOKING AT ALL TIERS AND ALL OF 3308 02:18:04,040 --> 02:18:05,240 THE PLAYERS INVOLVED. 3309 02:18:05,240 --> 02:18:07,600 NOT JUST THE RESEARCH COMMUNITY. 3310 02:18:07,600 --> 02:18:11,280 DR. ESPINOZA. 3311 02:18:11,280 --> 02:18:15,040 >> I SECONDED EVERYTHING THAT 3312 02:18:15,040 --> 02:18:16,680 NOEMI JUST SAID. 3313 02:18:16,680 --> 02:18:19,280 EFFECTIVE COMMUNICATION. 3314 02:18:19,280 --> 02:18:23,160 7 SO DIFFICULT FOR A SCIENTIST 3315 02:18:23,160 --> 02:18:26,560 TO BREAK DOWN THE CONCEPTS TO A 3316 02:18:26,560 --> 02:18:29,560 LEVEL THAT IS UNDERSTANDABLE. 3317 02:18:29,560 --> 02:18:35,600 WE WANT TO -- HAVE ENTHUSIASM 3318 02:18:35,600 --> 02:18:38,280 AND EXCITEMENT BUT WE SHOULD BE 3319 02:18:38,280 --> 02:18:41,000 CAUTIOUS NOT TO OVER PROMISE OR 3320 02:18:41,000 --> 02:18:43,080 EXAGGERATE. 3321 02:18:43,080 --> 02:18:46,480 SO VERY DIFFICULT TO FIND 3322 02:18:46,480 --> 02:18:50,760 MATERIAL THAT MEETS ALL OF THIS. 3323 02:18:50,760 --> 02:18:54,480 WE NEED TO HAVE LANGUAGE WITH 3324 02:18:54,480 --> 02:18:56,320 THUMB AND BE CAUTIOUS THAT WE'RE 3325 02:18:56,320 --> 02:18:58,520 NOT OVER PROMISING OR GENERATING 3326 02:18:58,520 --> 02:19:01,800 FALSE EXPECTATIONS. 3327 02:19:01,800 --> 02:19:04,440 SO I THINK ALL COULD TAKE HOURS 3328 02:19:04,440 --> 02:19:06,680 OF OUR BUSY SCHEDULE TO PRACTICE 3329 02:19:06,680 --> 02:19:08,800 AND THINK DEEPLY ABOUT OUR 3330 02:19:08,800 --> 02:19:09,640 COMMUNICATION MATERIAL 3331 02:19:09,640 --> 02:19:10,080 >> GREAT POINT. 3332 02:19:10,080 --> 02:19:11,760 THANK YOU. 3333 02:19:11,760 --> 02:19:17,520 DR. SON. 3334 02:19:17,520 --> 02:19:19,640 >> BEING A GENUINE FRIEND IS THE 3335 02:19:19,640 --> 02:19:21,640 KEY TO BUILD THE TRUST WITH THE 3336 02:19:21,640 --> 02:19:21,880 COMMUNITY. 3337 02:19:21,880 --> 02:19:26,680 BECAUSE PERSONALLY I DON'T -- 3338 02:19:26,680 --> 02:19:31,960 HAVE A CHILD WITH -- SYNDROME SO 3339 02:19:31,960 --> 02:19:34,600 WHEN I GO TO THE COMMUNITY THEY 3340 02:19:34,600 --> 02:19:36,280 ASK ABOUT WHY ARE YOU INTERESTED 3341 02:19:36,280 --> 02:19:38,360 IN THIS TOPIC AND DO YOU HAVE 3342 02:19:38,360 --> 02:19:40,720 ANY CHILD WITH DEVELOPMENTAL 3343 02:19:40,720 --> 02:19:42,800 DISABILITIES. 3344 02:19:42,800 --> 02:19:46,760 SO I THINK THEY ARE EVALUATING 3345 02:19:46,760 --> 02:19:50,040 ME BASED ON MY BACKGROUND. 3346 02:19:50,040 --> 02:19:52,680 SO I'M SHARING MY EXPERIENCES AS 3347 02:19:52,680 --> 02:19:55,600 A SOCIAL WORKER IN SOUTH KOREA 3348 02:19:55,600 --> 02:19:57,720 BECAUSE I WORKED WITH MANY 3349 02:19:57,720 --> 02:19:59,920 FAMILIES WHO HAVE CHILDREN WITH 3350 02:19:59,920 --> 02:20:02,760 DOWN SYNDROME AND OTHER 3351 02:20:02,760 --> 02:20:05,320 DEVELOPMENT DISABILITIES AND I'M 3352 02:20:05,320 --> 02:20:11,560 A--SHARING MY EXPERIENCES BECAUI 3353 02:20:11,560 --> 02:20:13,560 ENJOY MY TIME WITH THEM AND THAT 3354 02:20:13,560 --> 02:20:15,440 IS WHY I BECAME A RESEARCHER. 3355 02:20:15,440 --> 02:20:18,480 SO WHEN I SHARE MY PERSONAL 3356 02:20:18,480 --> 02:20:20,840 STORIES WITH THEM THEY ARE MORE 3357 02:20:20,840 --> 02:20:22,920 OPEN, THEY ARE MORE WILLING TO 3358 02:20:22,920 --> 02:20:24,280 OPEN THEIR OWN STORIES. 3359 02:20:24,280 --> 02:20:28,600 SO I THINK BEING A GENUINE 3360 02:20:28,600 --> 02:20:30,160 FRIEND AND SHOWING YOUR PASSION 3361 02:20:30,160 --> 02:20:33,240 ABOUT THE POPULATION, THE 3362 02:20:33,240 --> 02:20:35,400 COMMUNITY IS REALLY THE KEY TO 3363 02:20:35,400 --> 02:20:40,120 OPEN THEIR MINDS AND SO IN THAT 3364 02:20:40,120 --> 02:20:44,120 WAY THEY ARE THEY SAW ME AS A 3365 02:20:44,120 --> 02:20:46,400 HUMAN NOT AS A SCIENTISTS OR 3366 02:20:46,400 --> 02:20:49,800 JUST A RESEARCHER. 3367 02:20:49,800 --> 02:20:55,520 HAVING A GOOD RELATIONSHIP IS -- 3368 02:20:55,520 --> 02:20:57,040 THE SAME FOR THE COMMUNITY. 3369 02:20:57,040 --> 02:21:00,120 THE PROCESS IS THE SAME. 3370 02:21:00,120 --> 02:21:02,040 THINK ABOUT THAT IN THE SAME 3371 02:21:02,040 --> 02:21:02,680 FRAMEWORK. 3372 02:21:02,680 --> 02:21:04,960 NOT JUST FOR RELATIONSHIPS AS A 3373 02:21:04,960 --> 02:21:08,160 RESEARCHER AND PATIENTS. 3374 02:21:08,160 --> 02:21:11,680 SO IN THAT WAY WE CAN BUILD 3375 02:21:11,680 --> 02:21:16,160 STRONG TRUST WITH THE COMMUNITY. 3376 02:21:16,160 --> 02:21:16,880 >> EXCELLENT POINT. 3377 02:21:16,880 --> 02:21:18,760 THANK YOU SO MUCH. 3378 02:21:18,760 --> 02:21:20,800 DR. McCORMICK. 3379 02:21:20,800 --> 02:21:22,360 >> YEAH AND I WOULD AGREE WITH 3380 02:21:22,360 --> 02:21:23,680 ALL OF THE POINTS THAT HAVE BEEN 3381 02:21:23,680 --> 02:21:26,120 SAID BUT ONE THING THAT I WOULD 3382 02:21:26,120 --> 02:21:27,920 HIGHLIGHT IS THAT WE ALSO NEED 3383 02:21:27,920 --> 02:21:29,640 TO DO WORK ON OURSELVES AS 3384 02:21:29,640 --> 02:21:30,360 RESEARCHERS. 3385 02:21:30,360 --> 02:21:32,680 AND WHAT I MEAN BY THAT IS THERE 3386 02:21:32,680 --> 02:21:35,400 IS DEFINITIVE TRUTH OUT THERE 3387 02:21:35,400 --> 02:21:37,600 THAT HISTORICALLY HAS BEEN 3388 02:21:37,600 --> 02:21:39,880 ABUSES THAT HAVE BEEN DONE 3389 02:21:39,880 --> 02:21:40,680 THROUGH RESEARCH. 3390 02:21:40,680 --> 02:21:42,920 IT'S DIFFERENT COMMUNITIES AND 3391 02:21:42,920 --> 02:21:46,320 THINKING ABOUT THE STRUCTURAL 3392 02:21:46,320 --> 02:21:50,160 DISCRIMINATION AND STRUCTURAL 3393 02:21:50,160 --> 02:21:51,080 RACISM. 3394 02:21:51,080 --> 02:21:53,920 HE SAID I'M SO TIRED OF WAITING. 3395 02:21:53,920 --> 02:21:56,440 AREN'T YOU FOR THE WORLD TO 3396 02:21:56,440 --> 02:21:58,160 BECOME GOOD AND BEAUTIFUL AND 3397 02:21:58,160 --> 02:21:58,680 KIND. 3398 02:21:58,680 --> 02:22:01,440 LET US TAKE A KNIFE AND CUT THE 3399 02:22:01,440 --> 02:22:03,400 WORLD IN TWO AND SEE THE WORMS 3400 02:22:03,400 --> 02:22:05,520 THAT ARE EATING AT THE RIND. 3401 02:22:05,520 --> 02:22:07,720 IN RESEARCH WE OFTEN TRY TO 3402 02:22:07,720 --> 02:22:10,400 WE'RE INNOVATIVE AND FINDING NEW 3403 02:22:10,400 --> 02:22:12,040 THINGS OUT. 3404 02:22:12,040 --> 02:22:13,840 WE'RE OPTIMISTIC BUT IF WE DON'T 3405 02:22:13,840 --> 02:22:15,600 REMEMBER THE HISTORY THAT GOT US 3406 02:22:15,600 --> 02:22:18,560 HERE WE'RE DOOMED TO REPEAT SOME 3407 02:22:18,560 --> 02:22:19,800 OF THESE THINGS. 3408 02:22:19,800 --> 02:22:21,480 JUST AS RESEARCHERS WE HAVE TO 3409 02:22:21,480 --> 02:22:23,360 DO ALL OF THESE TRAININGS TO 3410 02:22:23,360 --> 02:22:25,040 MAKE SURE THAT WE'RE BEING 3411 02:22:25,040 --> 02:22:26,280 HUMANE IN OUR RESEARCH. 3412 02:22:26,280 --> 02:22:27,960 WE HAVE SHOULD ALSO BE THINKING 3413 02:22:27,960 --> 02:22:30,560 ABOUT HOW HAVE WE HISTORICALLY 3414 02:22:30,560 --> 02:22:31,400 NOT BEEN HUMANE. 3415 02:22:31,400 --> 02:22:33,760 WE CANNOT JUST MOVE PAST THE 3416 02:22:33,760 --> 02:22:34,160 PAST. 3417 02:22:34,160 --> 02:22:35,960 WE HAVE TO REMEMBER THOSE THINGS 3418 02:22:35,960 --> 02:22:37,920 SO WE DON'T KEEP DOING THIS. 3419 02:22:37,920 --> 02:22:40,120 WE NEED TO TRAIN TO BE 3420 02:22:40,120 --> 02:22:41,000 CULTURALLY HUMBLE. 3421 02:22:41,000 --> 02:22:44,120 WE NEED TO TREAT OUR RESEARCHERS 3422 02:22:44,120 --> 02:22:45,880 TO SAY HOW DO WE WORK IN 3423 02:22:45,880 --> 02:22:46,680 COMMUNITIES? 3424 02:22:46,680 --> 02:22:48,600 IT'S IMPORTANT FOR US NOT TO 3425 02:22:48,600 --> 02:22:50,080 FORGET THERE IS STILL WORK THAT 3426 02:22:50,080 --> 02:22:52,520 WE NEED TO DO ON OURSELVES TO 3427 02:22:52,520 --> 02:22:54,320 RECOGNIZE THESE EMBEDDED 3428 02:22:54,320 --> 02:22:56,280 PORTIONS. 3429 02:22:56,280 --> 02:22:58,720 RACISM AND DISCRIMINATION THAT 3430 02:22:58,720 --> 02:23:00,960 EXIST SO WE DON'T REPEAT THEM 3431 02:23:00,960 --> 02:23:02,960 >> GREAT POINT AND IT TOUCHES ON 3432 02:23:02,960 --> 02:23:05,320 WHAT MR. TORRES MENTIONED AS 3433 02:23:05,320 --> 02:23:08,240 WELL WITH REGARDS TO HOW 3434 02:23:08,240 --> 02:23:08,880 INDIVIDUALS WITHIN PUERTO RICO 3435 02:23:08,880 --> 02:23:11,160 HAVE BEEN TREATED. 3436 02:23:11,160 --> 02:23:13,480 SO VERY I KEEP SAYING EXCELLENT 3437 02:23:13,480 --> 02:23:15,920 POINT BUT THEY ARE ALL EXCELLENT 3438 02:23:15,920 --> 02:23:16,480 POINTS. 3439 02:23:16,480 --> 02:23:18,520 AND SO I DON'T KNOW IF THERE 3440 02:23:18,520 --> 02:23:21,600 WERE OTHER QUESTIONS? 3441 02:23:21,600 --> 02:23:25,120 BUT IF NOT I WANTED TO TAKE THIS 3442 02:23:25,120 --> 02:23:25,480 TIME. 3443 02:23:25,480 --> 02:23:28,120 I KNOW WE'RE A LITTLE AHEAD OF 3444 02:23:28,120 --> 02:23:30,720 SCHEDULE WHICH IS ALWAYS A GREAT 3445 02:23:30,720 --> 02:23:33,160 THING TO THANK OUR PANELISTS FOR 3446 02:23:33,160 --> 02:23:37,840 AN AMAZING AND VERY ENGAGING 3447 02:23:37,840 --> 02:23:48,080 CONVERSATION. 3448 02:24:09,000 --> 02:24:11,280 THANK YOU ALL AGAIN FOR YOUR 3449 02:24:11,280 --> 02:24:18,280 TIME AND ALSO THANK YOU SUJATA 3450 02:24:18,280 --> 02:24:19,720 FOR PARTICIPATING. 3451 02:24:19,720 --> 02:24:21,360 WE'RE A FEW MINUTES AHEAD WHICH 3452 02:24:21,360 --> 02:24:23,120 I THINK IS OKAY. 3453 02:24:23,120 --> 02:24:25,520 SO WE CAN BEGIN TO TAKE OUR 3454 02:24:25,520 --> 02:24:25,960 BREAK. 3455 02:24:25,960 --> 02:24:29,080 AND IF WE WOULD LIKE TO 3456 02:24:29,080 --> 02:24:30,840 RECONVENE SUJATA PLEASE CORRECT 3457 02:24:30,840 --> 02:24:34,920 ME IF I'M WRONG AT 2:50. 3458 02:24:34,920 --> 02:24:36,440 >> WE'LL TAKE OUR BREAK AND COME 3459 02:24:36,440 --> 02:24:39,840 BACK AT 3:00 P.M. EASTERN. 3460 02:24:39,840 --> 02:24:41,560 SO PEOPLE CAN HAVE A LITTLE MORE 3461 02:24:41,560 --> 02:24:42,280 TIME. 3462 02:24:42,280 --> 02:24:43,960 THE PREVIOUS SESSION HAD A SHORT 3463 02:24:43,960 --> 02:24:44,760 BREAK. 3464 02:24:44,760 --> 02:24:48,400 SO HAVE YOUR COFFEE, TEA, LUNCH 3465 02:24:48,400 --> 02:24:50,640 AND WE'LL SEE EVERYONE BACK AT 3466 02:24:50,640 --> 02:24:52,160 3:00 P.M. EASTERN TIME. 3467 02:24:52,160 --> 02:24:57,520 >> THANK YOU ALL SO MUCH. 3468 02:24:57,520 --> 02:25:00,080 WE WOULD LIKE TO INVITE YOU TO OUR 3469 02:25:00,080 --> 02:25:10,480 LAST SESSION OF THE DAY 3470 02:25:14,000 --> 02:25:19,760 >> FOR THIS SESSION -- 3471 02:25:19,760 --> 02:25:20,720 >> I CAN START. 3472 02:25:20,720 --> 02:25:21,960 IT'S FINE. 3473 02:25:21,960 --> 02:25:23,760 >> I THOUGHT YOU WERE GOING TO 3474 02:25:23,760 --> 02:25:27,200 INTRODUCE YOURSELF? 3475 02:25:27,200 --> 02:25:32,680 >> I AM DR. MARISHKA BROWN. 3476 02:25:32,680 --> 02:25:35,640 AND I AM VERY, VERY HAPPY TO BE 3477 02:25:35,640 --> 02:25:37,800 MODERATING THIS LAST SESSION. 3478 02:25:37,800 --> 02:25:39,840 PARTICULARLY FOCUSED ON THE 3479 02:25:39,840 --> 02:25:42,800 RESEARCH ASPECT FOR PERSONS 3480 02:25:42,800 --> 02:25:44,360 LIVING WITH DOWN SYNDROME. 3481 02:25:44,360 --> 02:25:46,800 BEFORE STARTING I WANT TO THANK 3482 02:25:46,800 --> 02:25:49,520 ALL OF THE PANELISTS AND THE 3483 02:25:49,520 --> 02:25:56,840 PATIENCE AND PARTICIPANTS AND 3484 02:25:56,840 --> 02:26:04,720 THE PATIENT ADVOCATES AND DR. 3485 02:26:04,720 --> 02:26:07,560 DR. TARVER DID A GREAT JOB WITH 3486 02:26:07,560 --> 02:26:11,480 THE MODERATION. 3487 02:26:11,480 --> 02:26:14,800 FIRST WE HAVE DAWN CORBETT. 3488 02:26:14,800 --> 02:26:16,680 SHE PROVIDES LEADERSHIP AND 3489 02:26:16,680 --> 02:26:17,960 COORDINATION FOR NIH WIDE 3490 02:26:17,960 --> 02:26:20,280 EFFORTS TO ENSURE THE INCLUSION 3491 02:26:20,280 --> 02:26:22,240 OF WOMEN, RACIAL AND ETHNIC 3492 02:26:22,240 --> 02:26:23,520 MINORITIES AND INDIVIDUALS 3493 02:26:23,520 --> 02:26:27,800 ACROSS THE LIFE-SPAN IN NIH 3494 02:26:27,800 --> 02:26:29,480 DEFINED CLINICAL RESEARCH. 3495 02:26:29,480 --> 02:26:32,400 NEXT WE HAVE DR. TRACY ROSSER, 3496 02:26:32,400 --> 02:26:34,160 AN ASSISTANT PROFESSOR AT THE 3497 02:26:34,160 --> 02:26:37,120 DEPARTMENT OF HUMAN GENETICS AT 3498 02:26:37,120 --> 02:26:41,520 EMORY UNIVERSITY WHO LEADS THE 3499 02:26:41,520 --> 02:26:49,800 DS360 PROGRAM. 3500 02:26:49,800 --> 02:26:51,960 DR. ROSSER RECEIVED HER BS 3501 02:26:51,960 --> 02:26:53,240 DEGREE FRAT UNIVERSITY OF 3502 02:26:53,240 --> 02:26:58,360 GEORGIA WITH A DOUBLE MAJOR IN 3503 02:26:58,360 --> 02:27:00,760 BIOCHEMISTRY AND GENETICS. 3504 02:27:00,760 --> 02:27:03,240 SHE COMPLETED HER PhD AT DUKE 3505 02:27:03,240 --> 02:27:06,560 AND WAS SUPPORTED AS AN NSF 3506 02:27:06,560 --> 02:27:08,200 GRADUATE FELLOW. 3507 02:27:08,200 --> 02:27:10,320 CURRENTLY DR. ROSSER IS THE 3508 02:27:10,320 --> 02:27:12,640 EMORY PI FOR THE RESEARCH 3509 02:27:12,640 --> 02:27:14,760 PROGRAM AND SHE STRIVES TO 3510 02:27:14,760 --> 02:27:16,760 ENSURE THAT PARTICIPANT 3511 02:27:16,760 --> 02:27:19,120 CONTRIBUTIONS TO RESEARCH ARE 3512 02:27:19,120 --> 02:27:20,120 MAXIMIZED TO THE FULLEST 3513 02:27:20,120 --> 02:27:22,000 POSSIBLE USE AND WORKS 3514 02:27:22,000 --> 02:27:23,360 DILIGENTLY TO SHARE RESULTS WITH 3515 02:27:23,360 --> 02:27:25,560 THE LARGER RESEARCH COMMUNITY AS 3516 02:27:25,560 --> 02:27:27,440 WELL AS PROVIDE RETURN OF VALUE 3517 02:27:27,440 --> 02:27:29,880 TO PARTICIPANTS. 3518 02:27:29,880 --> 02:27:35,920 NEXT, WE WILL HAVE BOTH DOCTORS 3519 02:27:35,920 --> 02:27:39,360 ANDREA KELLY AND DR. VICTORIA 3520 02:27:39,360 --> 02:27:40,280 MILLER. 3521 02:27:40,280 --> 02:27:41,680 DR. KELLY IS THE ATTENDING 3522 02:27:41,680 --> 02:27:44,320 PHYSICIAN AT THE DIVISION OF 3523 02:27:44,320 --> 02:27:47,960 ENDO C NOT GEE AND DIABETES AT 3524 02:27:47,960 --> 02:27:49,880 THE CHILDREN'S HOSPITAL. 3525 02:27:49,880 --> 02:27:56,400 * SHE HAS LONG-STANDING CLINICAL 3526 02:27:56,400 --> 02:28:06,880 RESEARCH AND MORE RECENTLY 3527 02:28:09,800 --> 02:28:11,920 ADOLESCENTS OF SOUTH ASIAN 3528 02:28:11,920 --> 02:28:12,840 ANCESTRY. 3529 02:28:12,840 --> 02:28:14,320 DR. MILLER IS A DIRECTOR OF 3530 02:28:14,320 --> 02:28:16,480 RESEARCH AT THE DIVISION OF 3531 02:28:16,480 --> 02:28:17,920 ADOLESCENT METH AT THE 3532 02:28:17,920 --> 02:28:19,400 CHILDREN'S HOSPITAL OF 3533 02:28:19,400 --> 02:28:21,160 PHILADELPHIA AND AN ASSOCIATE 3534 02:28:21,160 --> 02:28:24,600 PROFESSOR OF PEDIATRICS MEDICAL 3535 02:28:24,600 --> 02:28:26,600 HEALTHICS AND HEALTH POLICY AT 3536 02:28:26,600 --> 02:28:28,000 THE UNIVERSITY OF PENNSYLVANIA. 3537 02:28:28,000 --> 02:28:31,120 SHE EARNED HER DOCTORATE AND 3538 02:28:31,120 --> 02:28:35,640 CLINICAL PSYCHOLOGY IN CASE 3539 02:28:35,640 --> 02:28:37,360 WESTERN AND COMPLETED HER 3540 02:28:37,360 --> 02:28:38,440 FELLOWSHIP AT CHOP. 3541 02:28:38,440 --> 02:28:44,080 SHE IS CURRENTLY THE ETHIC'S 3542 02:28:44,080 --> 02:28:46,120 SPECIALIST AND PEDIATRIC 3543 02:28:46,120 --> 02:28:48,160 PSYCHOLOGY AND SHE WAS AN 3544 02:28:48,160 --> 02:28:51,360 ASSOCIATE EDITOR FOR THE JOURNAL 3545 02:28:51,360 --> 02:28:59,360 OF A JOB -. 3546 02:28:59,360 --> 02:29:06,080 I KNOW I ABBREVIATED THE BIOS. 3547 02:29:06,080 --> 02:29:07,640 ALL CAN BE FOUND ON THE WEBSITE 3548 02:29:07,640 --> 02:29:09,560 BUT WE WANT TO BE ABLE TO 3549 02:29:09,560 --> 02:29:11,240 DEDICATE TIME TO THE 3550 02:29:11,240 --> 02:29:12,800 PRESENTATIONS AS WELL AS THE 3551 02:29:12,800 --> 02:29:14,480 DISCUSSION AT THE END. 3552 02:29:14,480 --> 02:29:17,160 SO WITH THAT WE WILL START WITH 3553 02:29:17,160 --> 02:29:22,400 MS. CORBETT. 3554 02:29:22,400 --> 02:29:24,920 >> THANK YOU VERY MUCH. 3555 02:29:24,920 --> 02:29:27,720 WILL YOU BE SHARING MY SLIDES? 3556 02:29:27,720 --> 02:29:31,520 GREAT. 3557 02:29:31,520 --> 02:29:33,280 SO THANKS VERY MUCH FOR THE 3558 02:29:33,280 --> 02:29:33,760 INTRODUCTION. 3559 02:29:33,760 --> 02:29:35,720 I'M GOING TO BE TALKING A LITTLE 3560 02:29:35,720 --> 02:29:38,280 BIT ABOUT ENSURING INCLUSION AND 3561 02:29:38,280 --> 02:29:44,560 CLINICAL RESEARCH FROM AN NIH 3562 02:29:44,560 --> 02:29:49,720 PERSPECTIVE. 3563 02:29:49,720 --> 02:29:52,080 SO I WANT TO START BY SAYING NIH 3564 02:29:52,080 --> 02:29:53,880 HAS A LONG-STANDING COMMITMENT 3565 02:29:53,880 --> 02:29:55,760 TO INCLUSION IN CLINICAL 3566 02:29:55,760 --> 02:29:56,200 RESEARCH. 3567 02:29:56,200 --> 02:29:58,120 WE HAVE HAD POLICIES ABOUT THE 3568 02:29:58,120 --> 02:30:01,000 INCLUSION OF OUR PARTICIPANTS ON 3569 02:30:01,000 --> 02:30:04,800 THE BOOKS SINCE 1986 WHEN NIH 3570 02:30:04,800 --> 02:30:07,280 ENCOURAGED INCLUSION OF WOMEN IN 3571 02:30:07,280 --> 02:30:08,400 CLINICAL RESEARCH. 3572 02:30:08,400 --> 02:30:10,480 CONGRESS PASSED THE 3573 02:30:10,480 --> 02:30:14,240 REVITALIZATION ACT IN 1993 SO IT 3574 02:30:14,240 --> 02:30:16,440 BECAME PUBLIC LAW THAT NIH 3575 02:30:16,440 --> 02:30:18,120 INCLUDE WOMEN AND MEMBERS OF 3576 02:30:18,120 --> 02:30:20,880 RACIAL AND ETHNIC MINORITY 3577 02:30:20,880 --> 02:30:22,720 GROUPS IN RESEARCH. 3578 02:30:22,720 --> 02:30:27,720 IT WAS MADE POLICY 1994 AND THEN 3579 02:30:27,720 --> 02:30:29,720 IN 1998 NIH REALIZED THAT 3580 02:30:29,720 --> 02:30:31,840 CHILDREN WERE OFTEN EXCLUDED 3581 02:30:31,840 --> 02:30:33,240 FROM CLINICAL RESEARCH. 3582 02:30:33,240 --> 02:30:35,160 SO THEY ISSUED THE INCLUSION OF 3583 02:30:35,160 --> 02:30:36,880 CHILDREN POLICY. 3584 02:30:36,880 --> 02:30:38,680 THINGS STAYED STEADY FOR SEVERAL 3585 02:30:38,680 --> 02:30:39,880 YEARS. 3586 02:30:39,880 --> 02:30:41,320 IN 2015 WE CHANGED THE 3587 02:30:41,320 --> 02:30:42,800 DEFINITION OF A CHILD. 3588 02:30:42,800 --> 02:30:45,280 PREVIOUSLY DEFINED AS 3589 02:30:45,280 --> 02:30:46,960 INDIVIDUALS UNDER 21 AND WE 3590 02:30:46,960 --> 02:30:49,520 CHANGE EDIT TO CHILDREN UNDER 18 3591 02:30:49,520 --> 02:30:52,680 TO BETTER ALIGN WITH THE AGE TO 3592 02:30:52,680 --> 02:30:54,840 CONSENT FOR RESEARCH IN MOST 3593 02:30:54,840 --> 02:30:55,600 STATES. 3594 02:30:55,600 --> 02:30:59,120 AND THEN IN LATE 2016 THE 3595 02:30:59,120 --> 02:31:01,360 21st CENTURY'S CURE ACT WAS 3596 02:31:01,360 --> 02:31:06,160 PASSED BY CONGRESS. 3597 02:31:06,160 --> 02:31:08,600 NEW REPORTING REQUIREMENTS FOR 3598 02:31:08,600 --> 02:31:11,960 NIH DEFINED BASED PRECLINICAL 3599 02:31:11,960 --> 02:31:14,200 TRIALS, TO REPORT THE RESULTS BY 3600 02:31:14,200 --> 02:31:18,800 SEX OR GENDER, RACE OR ETHNICITY 3601 02:31:18,800 --> 02:31:21,440 AND THEN RECENTLY IN 2019 NIH 3602 02:31:21,440 --> 02:31:23,240 BEGAN REQUIRING INCLUSION OF 3603 02:31:23,240 --> 02:31:24,760 INDIVIDUALS OF ALL AGES. 3604 02:31:24,760 --> 02:31:27,000 AS PART OF OUR INCLUSION ACROSS 3605 02:31:27,000 --> 02:31:36,720 THE LIFE-SPAN POLICY. 3606 02:31:36,720 --> 02:31:40,080 SO I MENTIONED THE 21st 3607 02:31:40,080 --> 02:31:42,800 CENTURY CURES ACT WHICH WAS 3608 02:31:42,800 --> 02:31:45,960 PASSED IN 2016 AND INCLUDED A 3609 02:31:45,960 --> 02:31:47,800 NUMBER OF NEW REQUIREMENTS. 3610 02:31:47,800 --> 02:31:49,680 AMONG THOSE WERE THAT NIH 3611 02:31:49,680 --> 02:31:51,920 CONVENE A WORKSHOP ON AGE 3612 02:31:51,920 --> 02:31:54,440 GROUPINGS AND AGE EXCLUSIONS OF 3613 02:31:54,440 --> 02:31:56,480 CLINICAL RESEARCH AND POSE THE 3614 02:31:56,480 --> 02:31:58,760 FINDINGS ON THE NIH WEBSITE. 3615 02:31:58,760 --> 02:32:01,080 IT ALSO REQUIRED THAT NIH 3616 02:32:01,080 --> 02:32:03,600 PUBLISH GUIDELINES ADDRESSING 3617 02:32:03,600 --> 02:32:05,200 CONSIDERS OF AGE AND PUBLISH THE 3618 02:32:05,200 --> 02:32:07,320 NUMBER OF CHILDREN INCLUDED IN 3619 02:32:07,320 --> 02:32:09,960 NIH RESEARCH INCLUDING PEDIATRIC 3620 02:32:09,960 --> 02:32:11,320 SUBGROUPS BY RESEARCH CONDITION 3621 02:32:11,320 --> 02:32:13,240 OR DISEASE CATEGORY. 3622 02:32:13,240 --> 02:32:17,440 SO WE STARTED IMPLEMENTING THE 3623 02:32:17,440 --> 02:32:22,120 COUGS ACT IN 2017 -- AND YOU CAN 3624 02:32:22,120 --> 02:32:24,760 SEE THAT WE STARTED TO IMPLEMENT 3625 02:32:24,760 --> 02:32:27,240 THIS WITH A WORKSHOP TO GET 3626 02:32:27,240 --> 02:32:28,920 EXPERTS IN THE FIELD TOGETHER TO 3627 02:32:28,920 --> 02:32:31,800 TALK ABOUT CONSIDERATIONS FOR 3628 02:32:31,800 --> 02:32:33,120 INCLUSION OF INDIVIDUALS ACROSS 3629 02:32:33,120 --> 02:32:34,040 THE LIFE-SPAN. 3630 02:32:34,040 --> 02:32:37,520 SO WE HELD A MEETING JUNE 3631 02:32:37,520 --> 02:32:41,400 1st AND 2nd, 2017 IN 3632 02:32:41,400 --> 02:32:43,840 BETHESDA AND GATHERED A NUMBER 3633 02:32:43,840 --> 02:32:48,720 OF PEDIATRICIANS AND RESEARCHERS 3634 02:32:48,720 --> 02:32:50,960 AND PATIENT ADVOCATES AND 3635 02:32:50,960 --> 02:32:53,320 FEDERAL OFFICIALS AND OTHERS TO 3636 02:32:53,320 --> 02:32:55,040 DISCUSS THE CHALLENGES AND 3637 02:32:55,040 --> 02:32:56,400 BARRIERS TO INCLUDING CHILDREN 3638 02:32:56,400 --> 02:32:58,920 AND OLDER ADULTS IN CLINICAL 3639 02:32:58,920 --> 02:33:00,920 TRIALS AND IDENTIFY STRATEGIES 3640 02:33:00,920 --> 02:33:05,440 THAT WOULD PRODUCE MORE AGE 3641 02:33:05,440 --> 02:33:08,680 INCLUSIVE FOR CLINICAL TRIALS. 3642 02:33:08,680 --> 02:33:10,680 WE DID NOT HAVE A LOT OF DATA 3643 02:33:10,680 --> 02:33:14,120 ABOUT THE PARTICIPATION BASED ON 3644 02:33:14,120 --> 02:33:14,320 AGE. 3645 02:33:14,320 --> 02:33:16,920 AND THE OTHER THING THAT BECAME 3646 02:33:16,920 --> 02:33:18,880 CLEAR IS THAT OLDER ADULTS 3647 02:33:18,880 --> 02:33:20,760 FACEED MANY CHALLENGES TO 3648 02:33:20,760 --> 02:33:22,400 INCLUSION IN CLINICAL RESEARCH 3649 02:33:22,400 --> 02:33:25,520 SIMILAR TO THE BARRIERS FACED BY 3650 02:33:25,520 --> 02:33:26,800 CHILDREN. 3651 02:33:26,800 --> 02:33:29,960 ON THE NEXT SLIDE PLEASE YOU'LL 3652 02:33:29,960 --> 02:33:32,960 SEE THAT WE ALSO ISSUED A 3653 02:33:32,960 --> 02:33:34,640 REQUEST FOR INFORMATION WHERE WE 3654 02:33:34,640 --> 02:33:37,240 RECEIVED INFORMATION FROM THE 3655 02:33:37,240 --> 02:33:38,560 GENERAL PUBLIC ABOUT INVITING 3656 02:33:38,560 --> 02:33:41,480 THEM TO COMMENT ON 3657 02:33:41,480 --> 02:33:42,720 CONSIDERATIONS FOR INCLUSION IN 3658 02:33:42,720 --> 02:33:44,520 CLINICAL RESEARCH ACROSS THE 3659 02:33:44,520 --> 02:33:47,320 LIFE-SPAN. 3660 02:33:47,320 --> 02:33:49,680 AND ON THE NEXT SLIDE YOU CAN 3661 02:33:49,680 --> 02:33:51,520 SEE WE CONSIDERED ALL OF THE 3662 02:33:51,520 --> 02:33:57,040 FEEDBACK THAT WE RECEIVED AND IN 3663 02:33:57,040 --> 02:33:59,360 2017 NIH ANNOUNCED THE INCLUSION 3664 02:33:59,360 --> 02:34:01,640 ACROSS THE LIFE-SPAN POLICY 3665 02:34:01,640 --> 02:34:05,840 WHICH BECAME EFFECTIVE FOR 3666 02:34:05,840 --> 02:34:07,880 APPLICATIONS. 3667 02:34:07,880 --> 02:34:09,600 IN THIS POLICY IT REQUIRES THAT 3668 02:34:09,600 --> 02:34:12,360 INDIVIDUALS OF ALL AGES MUST BE 3669 02:34:12,360 --> 02:34:14,480 INCLUDED IN NIH SUBJECT HUMAN 3670 02:34:14,480 --> 02:34:16,480 RESEARCH UNLESS THERE IS IS 3671 02:34:16,480 --> 02:34:18,000 SCIENTIFIC OR ETHICAL REASONS 3672 02:34:18,000 --> 02:34:19,720 NOT TO DO SO. 3673 02:34:19,720 --> 02:34:21,440 IT REQUIRES SUBMISSION OF 3674 02:34:21,440 --> 02:34:22,920 INDIVIDUAL LEVEL DATA IN 3675 02:34:22,920 --> 02:34:24,040 PROGRESS REPORTS BASED ON 3676 02:34:24,040 --> 02:34:27,480 SECONDS OR GENDER, RACE, 3677 02:34:27,480 --> 02:34:29,960 ETHNICITY AND AGE AT ENROLLMENT. 3678 02:34:29,960 --> 02:34:33,920 ONE QUESTION IS DO WE NEED THE 3679 02:34:33,920 --> 02:34:34,320 INCLUSION OF THE 3680 02:34:34,320 --> 02:34:34,720 [ INDISCERNIBLE ] 3681 02:34:34,720 --> 02:34:37,040 BASED ON THE DISCUSSION AND THE 3682 02:34:37,040 --> 02:34:39,480 DATA WE SAW THERE WAS A LOT OF 3683 02:34:39,480 --> 02:34:42,440 EVIDENCE THAT OUR RESEARCH WAS 3684 02:34:42,440 --> 02:34:44,120 NOT REPRESENT I HAVE OF ALL AGE 3685 02:34:44,120 --> 02:34:45,400 GROUPS. 3686 02:34:45,400 --> 02:34:47,840 FOR EXAMPLE THE MEAN AGE OF 3687 02:34:47,840 --> 02:34:49,400 PARTICIPANTS IN CLINICAL TRIALS 3688 02:34:49,400 --> 02:34:53,440 WAS LOWER THAN THE AGE OF 3689 02:34:53,440 --> 02:34:54,400 INDIVIDUALS WITH THE CONDITION. 3690 02:34:54,400 --> 02:34:56,560 SO THE HOPE IS THAT THE 3691 02:34:56,560 --> 02:34:58,440 INCLUSION WILL HELP TO ADDRESS 3692 02:34:58,440 --> 02:35:01,960 SOME OF THE GAPS. 3693 02:35:01,960 --> 02:35:05,200 YOU CAN SEE OUR CURRENT 3694 02:35:05,200 --> 02:35:07,400 REQUIREMENTS FOR THE INCLUSION 3695 02:35:07,400 --> 02:35:09,760 OF WOMEN AND RACIAL AND ETHNIC 3696 02:35:09,760 --> 02:35:10,400 MINORITIES. 3697 02:35:10,400 --> 02:35:12,400 I MENTIONED WHEN WE TALKED ABOUT 3698 02:35:12,400 --> 02:35:14,080 THE TIME LINE THAT NIH HAS HAD 3699 02:35:14,080 --> 02:35:16,640 POLICIES ON THE INCLUSION OF 3700 02:35:16,640 --> 02:35:20,400 WOMEN AND MEMBERS OF RACIAL AND 3701 02:35:20,400 --> 02:35:22,280 ETHNIC MINORITIES GROUPS SINCE 3702 02:35:22,280 --> 02:35:25,480 1994. 3703 02:35:25,480 --> 02:35:28,200 SO THE CURRENT POLICY IS THAT 3704 02:35:28,200 --> 02:35:30,520 WOMEN AND MEMBERS OF RACIAL AND 3705 02:35:30,520 --> 02:35:33,080 ETHNIC MINORITY GROUPS MUST BE 3706 02:35:33,080 --> 02:35:34,440 INCLUDED IN ALL STUDIES UNLESS 3707 02:35:34,440 --> 02:35:37,560 THERE IS A COMPELLING RATIONAL 3708 02:35:37,560 --> 02:35:38,760 FOR EXCLUSION. 3709 02:35:38,760 --> 02:35:40,920 >> I'M SORRY TO INTERRUPT BULB 3710 02:35:40,920 --> 02:35:43,200 THE INTERPRETER WOULD LIKE YOU 3711 02:35:43,200 --> 02:35:45,000 TO PACE A LITTLE BIT SLOWER 3712 02:35:45,000 --> 02:35:45,280 >> OKAY. 3713 02:35:45,280 --> 02:35:46,600 THANK YOU VERY MUCH. 3714 02:35:46,600 --> 02:35:48,120 APPRECIATE THAT. 3715 02:35:48,120 --> 02:35:50,200 I TEND TO SPEAK QUICKLY. 3716 02:35:50,200 --> 02:35:54,160 I WILL TRY TO SLOW DOWN. 3717 02:35:54,160 --> 02:35:58,680 SO THE INCLUSION OF WOMEN AND 3718 02:35:58,680 --> 02:36:00,920 MEMBERS OF RACIAL AND ETHNIC 3719 02:36:00,920 --> 02:36:03,280 MINORITY GROUPS IS REQUIRED FOR 3720 02:36:03,280 --> 02:36:04,800 ANY RESEARCH STUDIES UNLESS 3721 02:36:04,800 --> 02:36:07,040 THERE IS A COMPELLING RATIONAL 3722 02:36:07,040 --> 02:36:09,520 FOR EXCLUSION SO WHAT MIGHT BE A 3723 02:36:09,520 --> 02:36:11,800 COMPELLING RATIONAL FOR EXAMPLE 3724 02:36:11,800 --> 02:36:15,800 IF YOU'RE DOING A STUDY ON 3725 02:36:15,800 --> 02:36:21,040 PROSTATE CANCER AND YOU MAY 3726 02:36:21,040 --> 02:36:25,040 INCLUDE SUBJECTS THAT AT BIRTH 3727 02:36:25,040 --> 02:36:27,680 THEY ARE ASSIGNED FEMALE. 3728 02:36:27,680 --> 02:36:30,960 IT'S NOT A COMPELLING RATIONAL 3729 02:36:30,960 --> 02:36:38,920 RATIONALFOR EXCLUSION. 3730 02:36:38,920 --> 02:36:41,840 FOR STUDIES THAT ARE DOING AN 3731 02:36:41,840 --> 02:36:43,920 NIH DEFINED PHASE III CLINICAL 3732 02:36:43,920 --> 02:36:45,920 TRIAL THEY HAVE ADDITIONAL 3733 02:36:45,920 --> 02:36:47,240 REQUIREMENTS TO REPORT THEIR 3734 02:36:47,240 --> 02:36:47,680 ANALYSIS. 3735 02:36:47,680 --> 02:36:51,080 BY SEX OR GENDER, RACE AND 3736 02:36:51,080 --> 02:36:56,120 ETHNICITY. 3737 02:36:56,120 --> 02:36:58,400 JUST TO SUMMARIZE THE CURRENT 3738 02:36:58,400 --> 02:37:00,240 REQUIREMENTS FOR APPLICANTS WE 3739 02:37:00,240 --> 02:37:02,920 REQUIRE THAT ALL APPLICANTS 3740 02:37:02,920 --> 02:37:05,040 PROVIDE PLANS FOR INCLUSION OF 3741 02:37:05,040 --> 02:37:06,840 WOMEN AND RACIAL AND ETHNIC 3742 02:37:06,840 --> 02:37:08,560 MINORITY GROUPS AND A PLAN FOR 3743 02:37:08,560 --> 02:37:10,080 INDIVIDUALS ACROSS THE 3744 02:37:10,080 --> 02:37:10,720 LIFE-SPAN. 3745 02:37:10,720 --> 02:37:13,520 SO THESE PLANS SHOULD INCLUDE 3746 02:37:13,520 --> 02:37:15,560 OUTREACH STRATEGIES TO THESE 3747 02:37:15,560 --> 02:37:15,760 GROUPS. 3748 02:37:15,760 --> 02:37:19,160 AND EXPLAIN THE RECRUITMENT AND 3749 02:37:19,160 --> 02:37:21,280 RETENTION OF THESE POPULATIONS. 3750 02:37:21,280 --> 02:37:22,600 APPLICANTS ARE ALSO REQUIRED TO 3751 02:37:22,600 --> 02:37:25,800 PROVIDE MINIMUM AND MAXIMUM AGE 3752 02:37:25,800 --> 02:37:28,080 LIMITS AND INCLUSION ENROLLMENT 3753 02:37:28,080 --> 02:37:29,560 REPORT WHICH IS A FORM THAT YOU 3754 02:37:29,560 --> 02:37:31,880 SEE HERE THAT SHOWS THE 3755 02:37:31,880 --> 02:37:33,440 DEMOGRAPHICS OF THE PARTICIPANTS 3756 02:37:33,440 --> 02:37:34,960 THEY WILL BE RECRUITING. 3757 02:37:34,960 --> 02:37:38,080 YOU CAN SEE OUR REQUIREMENTS FOR 3758 02:37:38,080 --> 02:37:38,920 PROGRESS REPORTS. 3759 02:37:38,920 --> 02:37:41,520 AND IN EACH PROGRESS REPORT 3760 02:37:41,520 --> 02:37:43,880 INVESTIGATORS ARE REQUIRED TO 3761 02:37:43,880 --> 02:37:46,960 SUBMIT INDIVIDUAL LEVEL DATA ON 3762 02:37:46,960 --> 02:37:51,240 THE RACE, ETHNICITY, SEX OR 3763 02:37:51,240 --> 02:37:53,240 GENDER, AGE OF EVERY PARTICIPANT 3764 02:37:53,240 --> 02:37:54,680 IN THEIR RESEARCH AND THIS 3765 02:37:54,680 --> 02:37:59,200 ALLOWS US TO NOT ONLY GATHER AGE 3766 02:37:59,200 --> 02:38:01,960 DATA FOR THE FIRST TIME BUT ALSO 3767 02:38:01,960 --> 02:38:04,080 HELPS US TO BE ABLE TO LOOK AT 3768 02:38:04,080 --> 02:38:07,200 THE INTERSECTION OF THESE 3769 02:38:07,200 --> 02:38:12,720 VARIABLES. 3770 02:38:12,720 --> 02:38:16,120 SO THE RESULT OF ALL OF THIS IS 3771 02:38:16,120 --> 02:38:17,920 THAT NIH HAS BEEN ABLE TO 3772 02:38:17,920 --> 02:38:20,560 IMPLEMENT THE 21st CENTURY 3773 02:38:20,560 --> 02:38:21,320 CURES ACT REQUIREMENTS. 3774 02:38:21,320 --> 02:38:23,640 WEST NOW HAVE DATA AVAILABLE ON 3775 02:38:23,640 --> 02:38:27,600 OUR WEBSITE WHICH SHOW THE 3776 02:38:27,600 --> 02:38:30,160 DEMOGRAPHICS OF PARTICIPANTS IN 3777 02:38:30,160 --> 02:38:31,200 OUR RESEARCH. 3778 02:38:31,200 --> 02:38:34,440 BY SEX, GENDER, RACE OR 3779 02:38:34,440 --> 02:38:34,840 ETHNICITY. 3780 02:38:34,840 --> 02:38:36,960 AND NOW WE HAVE THE FIRST 3781 02:38:36,960 --> 02:38:40,440 SNAPSHOT OF DATA BY AGE WHICH 3782 02:38:40,440 --> 02:38:41,440 JUST BECAME AVAILABLE MORE 3783 02:38:41,440 --> 02:38:42,840 RECENTLY THIS YEAR. 3784 02:38:42,840 --> 02:38:46,160 THE DATA ARE AVAILABLE FOR ALL 3785 02:38:46,160 --> 02:38:48,720 OF OUR RESEARCH CONDITION AND 3786 02:38:48,720 --> 02:38:49,800 DISEASE CATEGORIES. 3787 02:38:49,800 --> 02:38:51,640 THIS INCLUDES A CATEGORY FOR 3788 02:38:51,640 --> 02:38:52,720 DOWN SYNDROME. 3789 02:38:52,720 --> 02:38:54,280 YOU CAN GO TO OUR WEBSITE AND 3790 02:38:54,280 --> 02:38:57,280 LOOK AT PARTICIPANTS IN ANY 3791 02:38:57,280 --> 02:38:59,520 GIVEN YEAR ON WHAT THE 3792 02:38:59,520 --> 02:39:00,920 DEMOGRAPHICS LOOK LIKE. 3793 02:39:00,920 --> 02:39:05,320 TO SHOW YOU A SNAPSHOT I HAVE 3794 02:39:05,320 --> 02:39:07,880 DATA AVAILABLE BY A BROAD AGE 3795 02:39:07,880 --> 02:39:12,320 GROUPS. 3796 02:39:12,320 --> 02:39:14,040 AND THIS SHOWS FOR THE FIRST 3797 02:39:14,040 --> 02:39:15,920 TIME WE WERE ABLE TO LOOK AT AGE 3798 02:39:15,920 --> 02:39:17,880 OF PARTICIPANTS IN OUR RESEARCH. 3799 02:39:17,880 --> 02:39:20,320 SO WHILE THIS IS JUST A SNAPSHOT 3800 02:39:20,320 --> 02:39:22,320 OF DATA I THINK THIS IS REALLY 3801 02:39:22,320 --> 02:39:22,760 EXCITING. 3802 02:39:22,760 --> 02:39:25,880 YOU CAN SEE BASED ON THIS GRAPH 3803 02:39:25,880 --> 02:39:28,280 THIS SHOWS FOR THE DATA THAT WE 3804 02:39:28,280 --> 02:39:32,760 HAVE THE YEAR 2021 ABOUT 20% OF 3805 02:39:32,760 --> 02:39:33,360 RESEARCH PARTICIPANTS WERE 3806 02:39:33,360 --> 02:39:34,080 CHILDREN. 3807 02:39:34,080 --> 02:39:39,360 7 ABOUT 58% ADULTS 18-64. 3808 02:39:39,360 --> 02:39:43,720 BEFORE 19% OLDER ADULTS 65 AND 3809 02:39:43,720 --> 02:39:46,880 OVER AND A SMALL PERCENTAGE OF 3810 02:39:46,880 --> 02:39:48,720 UNKNOWN AT ABOUT 3%. 3811 02:39:48,720 --> 02:39:50,680 YOU CAN SEE SOME ADDITIONAL 3812 02:39:50,680 --> 02:39:53,040 BREAK DOWN BY NARROW GROUPS. 3813 02:39:53,040 --> 02:39:55,040 WE DID RECEIVE A LOT OF FEEDBACK 3814 02:39:55,040 --> 02:39:56,600 FROM THE COMMUNITY ABOUT THE AGE 3815 02:39:56,600 --> 02:39:58,920 GROUPS THAT WERE MOST IMPORTANT 3816 02:39:58,920 --> 02:40:00,960 TO CONSIDER AS WE THOUGHT ABOUT 3817 02:40:00,960 --> 02:40:05,280 REPORTING FOR THIS POLICY. 3818 02:40:05,280 --> 02:40:07,360 SO, WE TOOK THE FEEDBACK THAT WE 3819 02:40:07,360 --> 02:40:09,200 RECEIVED TO HEART. 3820 02:40:09,200 --> 02:40:11,400 THIS GENERALLY REFLECTS THE 3821 02:40:11,400 --> 02:40:13,000 FEEDBACK WE RECEIVED ON AGE 3822 02:40:13,000 --> 02:40:14,400 GROUP REPORTING. 3823 02:40:14,400 --> 02:40:16,400 AND SO YOU CAN SEE FOR EXAMPLE 3824 02:40:16,400 --> 02:40:18,680 IN THIS ONE A LITTLE MORE 3825 02:40:18,680 --> 02:40:22,040 GRANULAR DATA. WE HAVE A LOT OF 3826 02:40:22,040 --> 02:40:22,800 PARTICIPANT FOR EXAMPLE BETWEEN 3827 02:40:22,800 --> 02:40:25,000 THE AGES OF 55-64. 3828 02:40:25,000 --> 02:40:27,880 THERE IS A DROP OFF AFTER THAT 3829 02:40:27,880 --> 02:40:30,520 AND SOME OF OUR CATEGORIES ARE 3830 02:40:30,520 --> 02:40:31,080 QUITE SMALL. 3831 02:40:31,080 --> 02:40:36,040 IF WE LOOK AT PARTICIPATION OF 3832 02:40:36,040 --> 02:40:38,240 ADOLESCENTS IT'S SMALLER THAN WE 3833 02:40:38,240 --> 02:40:40,160 WOULD EXPECT. 3834 02:40:40,160 --> 02:40:45,080 AND THE NEXT SLIDE WE CAN SEE 3835 02:40:45,080 --> 02:40:47,640 ENROLLMENT BY SEX OR GENDER, 3836 02:40:47,640 --> 02:40:51,920 RACE OR ETHNICITY. 3837 02:40:51,920 --> 02:40:54,320 OVER HALF WERE FEMALE. 3838 02:40:54,320 --> 02:40:55,600 ABOUT 59%. 3839 02:40:55,600 --> 02:40:59,280 AND IF WE LOOK AT RACIAL 3840 02:40:59,280 --> 02:41:02,920 CATEGORIES WE CAN SEE ABOUT 1% 3841 02:41:02,920 --> 02:41:05,720 IDENTIFIED AS AMERICAN INDIAN OR 3842 02:41:05,720 --> 02:41:07,440 ALASKAN NATIVE. 3843 02:41:07,440 --> 02:41:10,520 ABOUT 5% IDENTIFIED AS ASIAN. 3844 02:41:10,520 --> 02:41:13,560 13% IDENTIFIED AS BLACK OR 3845 02:41:13,560 --> 02:41:14,600 AFRICAN-AMERICAN. 3846 02:41:14,600 --> 02:41:17,040 LESS THAN 1% IDENTIFIED AS 3847 02:41:17,040 --> 02:41:19,880 NATIVE HAWAIIAN OR OTHER PACIFIC 3848 02:41:19,880 --> 02:41:20,520 ISLANDER. 3849 02:41:20,520 --> 02:41:23,800 AND THE LARGEST RACIAL GROUP WAS 3850 02:41:23,800 --> 02:41:26,280 WHITE. 3851 02:41:26,280 --> 02:41:27,960 ABOUT 2% IDENTIFIED AS MORE THAN 3852 02:41:27,960 --> 02:41:29,960 ONE RACE AND WE HAD A FAIRLY 3853 02:41:29,960 --> 02:41:33,360 HIGH OF UNKNOWN OR NOT REPORTED. 3854 02:41:33,360 --> 02:41:34,040 ABOUT 14%. 3855 02:41:34,040 --> 02:41:36,720 IF WE LOOK AT ETHNICITY WE CAN 3856 02:41:36,720 --> 02:41:41,640 SEE ABOUT 10.5% IDENTIFIED AS 3857 02:41:41,640 --> 02:41:45,160 HISPANIC OR LATINO. 3858 02:41:45,160 --> 02:41:50,800 THE NEXT SLIDE PLEASE. 3859 02:41:50,800 --> 02:41:52,720 >> ANOTHER REMINDER ABOUT 3860 02:41:52,720 --> 02:41:53,560 PACING. 3861 02:41:53,560 --> 02:41:55,720 THE INTERPRETERS ARE HAVING A 3862 02:41:55,720 --> 02:41:56,680 CHALLENGE KEEPING UP. 3863 02:41:56,680 --> 02:41:57,440 7 3864 02:41:57,440 --> 02:41:58,040 >> OKAY. 3865 02:41:58,040 --> 02:41:58,720 OKAY. 3866 02:41:58,720 --> 02:42:01,520 I APOLOGIZE. 3867 02:42:01,520 --> 02:42:03,000 WE'LL GIVE THEM A MOMENT TO 3868 02:42:03,000 --> 02:42:03,480 CATCH UP. 3869 02:42:03,480 --> 02:42:12,280 7 -- SO I WANTED TO TELL YOU ALL 3870 02:42:12,280 --> 02:42:13,960 SINCE WE'VE IMPLEMENTED THE 3871 02:42:13,960 --> 02:42:16,200 INCLUSION ACROSS THE LIFE-SPAN 3872 02:42:16,200 --> 02:42:17,760 POLICY ONE OF THE THINGS THAT 3873 02:42:17,760 --> 02:42:19,840 WE'VE DONE IS WE HAD A MEETING 3874 02:42:19,840 --> 02:42:22,440 IN SEPTEMBER 2020 TO SEE HOW WE 3875 02:42:22,440 --> 02:42:24,520 WERE DOING IN IMPLEMENTATION OF 3876 02:42:24,520 --> 02:42:26,360 THE POLICIES AND WHAT WERE THE 3877 02:42:26,360 --> 02:42:29,360 ONGOING CHALLENGES? 3878 02:42:29,360 --> 02:42:30,920 INCLUDING INDIVIDUALS ACROSS ALL 3879 02:42:30,920 --> 02:42:33,680 AGE GROUPS AND ACROSS VARIOUS 3880 02:42:33,680 --> 02:42:34,520 DEMOGRAPHICS. 3881 02:42:34,520 --> 02:42:36,080 AVENUE THE FULL REPORT FROM THAT 3882 02:42:36,080 --> 02:42:37,480 MEETING IS AVAILABLE ON OUR 3883 02:42:37,480 --> 02:42:38,120 WEBSITE. 3884 02:42:38,120 --> 02:42:39,920 BUT I DID WANT TO SHARE WITH YOU 3885 02:42:39,920 --> 02:42:42,000 SOME OF THE RECURRENT THEMES. 3886 02:42:42,000 --> 02:42:43,920 AND A LOT OF THESE WE'VE 3887 02:42:43,920 --> 02:42:46,400 DISCUSSED TODAY. 3888 02:42:46,400 --> 02:42:48,760 THESE INCLUDE THINGS LIKE 3889 02:42:48,760 --> 02:42:51,320 LIMITING INCLUSION AND EXCLUSION 3890 02:42:51,320 --> 02:42:51,760 CRITERIA. 3891 02:42:51,760 --> 02:42:53,960 SO WE WANT TO MAKE SURE THAT OUR 3892 02:42:53,960 --> 02:42:56,240 INCLUSION AND EXCLUSION CRITERIA 3893 02:42:56,240 --> 02:42:57,800 ARE ALL NECESSARY AND THAT WE'RE 3894 02:42:57,800 --> 02:43:01,400 NOT PUTTING IN INCLUSION AND 3895 02:43:01,400 --> 02:43:04,040 EXCLUSION CRITERIA THAT MAY BE 3896 02:43:04,040 --> 02:43:06,480 ARBITRARY AND MAY 3897 02:43:06,480 --> 02:43:07,480 DISPROPORTIONATELY EXCLUDE 3898 02:43:07,480 --> 02:43:12,080 CERTAIN GROUPS UNNECESSARILY. 3899 02:43:12,080 --> 02:43:15,200 ALSO WEIGHING THE RISK OF 3900 02:43:15,200 --> 02:43:17,920 EXCLUSION VERSUS PARTICIPATION. 3901 02:43:17,920 --> 02:43:19,480 CERTAIN GROUPS ARE MORE LIKELY 3902 02:43:19,480 --> 02:43:24,600 TO BE EXCLUDED INCLUDING 3903 02:43:24,600 --> 02:43:28,880 CHILDREN ALSO INCLUDING 3904 02:43:28,880 --> 02:43:29,920 INDIVIDUALS WITH FOR EXAMPLE 3905 02:43:29,920 --> 02:43:30,480 PREGNANT WOMEN. 3906 02:43:30,480 --> 02:43:34,360 8 WHO MAY BE CONSIDERED 3907 02:43:34,360 --> 02:43:35,600 POPULATIONS WITH SPECIAL 3908 02:43:35,600 --> 02:43:38,120 PROTECTIONS BY THE REGULATION. 3909 02:43:38,120 --> 02:43:41,280 HOWEVER, I THINK AS WE'VE SEEN 3910 02:43:41,280 --> 02:43:45,600 FOR EXAMPLE IN OUR RESEARCH IN 3911 02:43:45,600 --> 02:43:47,200 COVID-19 THAT IF GROUPS ARE NOT 3912 02:43:47,200 --> 02:43:49,080 INCLUDED WE DON'T HAVE THE 3913 02:43:49,080 --> 02:43:50,560 INFORMATION THAT WE NEED TO BE 3914 02:43:50,560 --> 02:43:52,400 ABLE TO APPROPRIATELY TREAT 3915 02:43:52,400 --> 02:43:53,560 THEM. 3916 02:43:53,560 --> 02:43:55,280 SO IT IS IMPORTANT THAT WE 3917 02:43:55,280 --> 02:43:58,160 CONSIDER NOT ONLY THE RISK OF 3918 02:43:58,160 --> 02:43:59,600 PARTICIPATING IN RESEARCH BUT 3919 02:43:59,600 --> 02:44:03,480 THE RISK OF NOT PARTICIPATING IN 3920 02:44:03,480 --> 02:44:05,120 RESEARCH AND WHAT THAT MEANS FOR 3921 02:44:05,120 --> 02:44:06,560 VARIOUS GROUPS. 3922 02:44:06,560 --> 02:44:08,560 MINIMIZING PARTICIPANT AND CARE 3923 02:44:08,560 --> 02:44:10,240 GIVER BURDEN IS ANOTHER BIG 3924 02:44:10,240 --> 02:44:10,640 ISSUE. 3925 02:44:10,640 --> 02:44:12,920 THIS HAS COME UP A LOT TODAY. 3926 02:44:12,920 --> 02:44:15,400 AND I REALLY APPRECIATE YOUR 3927 02:44:15,400 --> 02:44:17,360 COMMENTS THAT YOU ALL HAVE LIVES 3928 02:44:17,360 --> 02:44:18,680 AND YOU ALL HAVE 3929 02:44:18,680 --> 02:44:19,840 RESPONSIBILITIES AND IT'S 3930 02:44:19,840 --> 02:44:21,720 CHALLENGING TO GET TO MULTIPLE 3931 02:44:21,720 --> 02:44:25,600 STUDY VISITS. 3932 02:44:25,600 --> 02:44:26,800 UNDERGO MULTIPLE IT WILL STUDY 3933 02:44:26,800 --> 02:44:27,120 PROCEDURES. 3934 02:44:27,120 --> 02:44:28,480 THIS IS SOMETHING THAT WE NEED 3935 02:44:28,480 --> 02:44:31,040 TO KEEP AT THE FOREFRONT IN OUR 3936 02:44:31,040 --> 02:44:31,440 RESEARCH. 3937 02:44:31,440 --> 02:44:33,360 THE BURDEN ON THE PARTICIPANT 3938 02:44:33,360 --> 02:44:35,240 AND THE CARE GIVER AND THE WAYS 3939 02:44:35,240 --> 02:44:38,160 THAT WE CAN MINIMIZE THAT BURDEN 3940 02:44:38,160 --> 02:44:41,200 AS WE'RE DESIGNING OUR STUDIES. 3941 02:44:41,200 --> 02:44:43,200 ANOTHER POINT IS ABOUT 3942 02:44:43,200 --> 02:44:46,040 CONSIDERING THE DIVERSITY WITHIN 3943 02:44:46,040 --> 02:44:46,800 POPULATIONS. 3944 02:44:46,800 --> 02:44:51,080 SO POPULATIONS ARE NOT A 3945 02:44:51,080 --> 02:44:54,480 MONOLITH -- PEOPLE ARE VERY 3946 02:44:54,480 --> 02:44:55,000 DIFFERENT. 3947 02:44:55,000 --> 02:44:57,920 THEY DIFFER IN SIZE, DIET, 3948 02:44:57,920 --> 02:44:59,880 COGNITIVE STATUS. 3949 02:44:59,880 --> 02:45:02,840 DISABILITY ETC. AND SO WE NEED 3950 02:45:02,840 --> 02:45:04,200 TO MAKE SURE THAT WE'RE 3951 02:45:04,200 --> 02:45:06,120 CONSIDERING THAT DIVERSITY IN 3952 02:45:06,120 --> 02:45:09,520 STUDY DESIGN. 3953 02:45:09,520 --> 02:45:11,800 AND THEN SOME ADDITIONAL POINTS 3954 02:45:11,800 --> 02:45:14,200 INCLUDE MAKING SURE THAT WE'RE 3955 02:45:14,200 --> 02:45:16,080 CONTINUALLY ASSESSING AND 3956 02:45:16,080 --> 02:45:17,760 ADJUSTING OUR RECRUITMENT AND 3957 02:45:17,760 --> 02:45:18,280 RETENTION. 3958 02:45:18,280 --> 02:45:20,880 THIS IS NOT JUST A PLAN THAT WE 3959 02:45:20,880 --> 02:45:23,520 CREATE AND WE'RE DONE. 3960 02:45:23,520 --> 02:45:27,440 WE NEED TO MAKE SURE IT'S BEING 3961 02:45:27,440 --> 02:45:28,440 IMPLEMENTEDDED AND EXECUTED 3962 02:45:28,440 --> 02:45:28,920 APPROPRIATELY. 3963 02:45:28,920 --> 02:45:31,200 AND MAKING ADJUSTMENTS WHEN WE 3964 02:45:31,200 --> 02:45:32,640 NEED TO. 3965 02:45:32,640 --> 02:45:35,560 AND THEN FINALLY RESEARCHER 3966 02:45:35,560 --> 02:45:42,960 TRAINING AND RESOURCES. 3967 02:45:42,960 --> 02:45:44,920 I'LL TALK A LITTLE BIT ABOUT 3968 02:45:44,920 --> 02:45:46,520 SOME MORE RECENT EFFORTS. 3969 02:45:46,520 --> 02:45:51,360 7 NIH RECENTLY FUNDED A CONTRACT 3970 02:45:51,360 --> 02:45:55,040 WITH THE NATIONAL ACADEMY OF 3971 02:45:55,040 --> 02:45:57,000 SCIENCE ENGINEERING AND MEDICINE 3972 02:45:57,000 --> 02:45:59,440 WHICH PRODUCED A REPORT ON 3973 02:45:59,440 --> 02:46:00,880 IMPROVING REPRESENTATION IN 3974 02:46:00,880 --> 02:46:02,840 CLINICAL TRIALS AND RESEARCH. 3975 02:46:02,840 --> 02:46:05,520 SO THE FULL REPORT IS AVAILABLE 3976 02:46:05,520 --> 02:46:07,760 ON THE ACADEMY'S WEBSITE. 3977 02:46:07,760 --> 02:46:10,000 IT INCLUDED A NUMBER OF 3978 02:46:10,000 --> 02:46:12,360 RECOMMENDATIONS FOR NIH FOR 3979 02:46:12,360 --> 02:46:15,360 FEDERAL AGENCIES AND FOR THE 3980 02:46:15,360 --> 02:46:16,720 SCIENTIFIC COMMUNITY. 3981 02:46:16,720 --> 02:46:19,600 THAT OUTLINE SOME POTENTIAL NEXT 3982 02:46:19,600 --> 02:46:21,360 STEPS FOR INCLUSION. 3983 02:46:21,360 --> 02:46:23,640 SO THIS GIVES US A LOT TO THINK 3984 02:46:23,640 --> 02:46:25,200 ABOUT. 3985 02:46:25,200 --> 02:46:26,800 IT INCLUDES THINGS FOR EXAMPLE 3986 02:46:26,800 --> 02:46:29,080 LOOKING AT REIMBURSEMENT FOR 3987 02:46:29,080 --> 02:46:29,760 STUDIES. 3988 02:46:29,760 --> 02:46:31,880 LOOKING AT PARTICIPANT 3989 02:46:31,880 --> 02:46:33,080 COMPENSATION. 3990 02:46:33,080 --> 02:46:38,440 LOOKING AT NIH'S PROCESSES AND 3991 02:46:38,440 --> 02:46:41,120 REVIEW CRITERIA TO ENSURE 3992 02:46:41,120 --> 02:46:41,560 INCLUSION. 3993 02:46:41,560 --> 02:46:44,200 AND ALSO SUPPORTING COMMUNITY 3994 02:46:44,200 --> 02:46:45,440 ENGAGEMENT EFFORTS WHICH WE'VE 3995 02:46:45,440 --> 02:46:47,000 HEARD A LOT ABOUT TODAY AND 3996 02:46:47,000 --> 02:46:48,720 MAKING SURE THAT THOSE ARE 3997 02:46:48,720 --> 02:46:53,120 ADEQUATELY SUPPORTED AND FUNDED 3998 02:46:53,120 --> 02:47:02,400 BY THOSE INVOLVED IN RESEARCH. 3999 02:47:02,400 --> 02:47:04,520 I WANT TO ALSO LET YOU KNOW 4000 02:47:04,520 --> 02:47:07,400 ABOUT SOME COMMUNICATIONS IN 4001 02:47:07,400 --> 02:47:08,280 TRAINING. 4002 02:47:08,280 --> 02:47:11,920 MY OFFICE -- THE OFFICE OF 4003 02:47:11,920 --> 02:47:12,720 EXTRAMURAL RESEARCH PUTS 4004 02:47:12,720 --> 02:47:14,520 TOGETHER A NUMBER OF RESOURCES 4005 02:47:14,520 --> 02:47:17,160 FOR INVESTIGATORS AND FOR THE 4006 02:47:17,160 --> 02:47:18,440 SCIENTIFIC COMMUNITY. 4007 02:47:18,440 --> 02:47:21,760 MIKE LAUER OUR DEPUTY DIRECTOR 4008 02:47:21,760 --> 02:47:23,840 HAS WRITTEN A NUMBER OF BLOGS. 4009 02:47:23,840 --> 02:47:25,440 I ENCOURAGE YOU TO CHECK THEM 4010 02:47:25,440 --> 02:47:25,840 OUT. 4011 02:47:25,840 --> 02:47:27,120 WE HAVE TRAINING FOR 4012 02:47:27,120 --> 02:47:28,960 INVESTIGATORS AVAILABLE ON OUR 4013 02:47:28,960 --> 02:47:29,560 WEBSITE. 4014 02:47:29,560 --> 02:47:32,040 WE PRESENT THIS EVERY YEAR AT 4015 02:47:32,040 --> 02:47:33,680 OUR VIRTUAL SEMINAR. 4016 02:47:33,680 --> 02:47:37,200 WE HAD IT FOR 14,000 ATTENDEES 4017 02:47:37,200 --> 02:47:37,840 LAST YEAR. 4018 02:47:37,840 --> 02:47:40,480 SO IT REALLY ALLOWS US TO GET A 4019 02:47:40,480 --> 02:47:42,600 BROAD REACH OUT THERE IN THE 4020 02:47:42,600 --> 02:47:44,280 SCIENTIFIC COMMUNITY TO LET THEM 4021 02:47:44,280 --> 02:47:46,080 KNOW ABOUT INCLUSION ISSUES AND 4022 02:47:46,080 --> 02:47:46,720 REQUIREMENTS. 4023 02:47:46,720 --> 02:47:48,800 SO WE WILL BE DOING THAT AGAIN 4024 02:47:48,800 --> 02:47:49,760 THIS YEAR. 4025 02:47:49,760 --> 02:47:51,440 ALSO HAVE THAT AVAILABLE ON OUR 4026 02:47:51,440 --> 02:47:54,840 WEBSITE. 4027 02:47:54,840 --> 02:48:01,200 AND FINALLY I JUST WANTED TO 4028 02:48:01,200 --> 02:48:03,560 POINT YOU TO SOME ADDITIONAL 4029 02:48:03,560 --> 02:48:04,640 RESOURCES THAT WE HAVE AVAILABLE 4030 02:48:04,640 --> 02:48:05,840 ON OUR WEBSITE. 4031 02:48:05,840 --> 02:48:08,720 OUR INCLUSION WEBSITE, I 4032 02:48:08,720 --> 02:48:10,480 ENCOURAGE YOU TO CHECK THEM OUT. 4033 02:48:10,480 --> 02:48:11,360 THANK YOU VERY MUCH. 4034 02:48:11,360 --> 02:48:12,840 I APPRECIATE THE OPPORTUNITY TO 4035 02:48:12,840 --> 02:48:14,080 TALK TO YOU TODAY. 4036 02:48:14,080 --> 02:48:18,040 >> THANK YOU SO MUCH AND THAT 4037 02:48:18,040 --> 02:48:19,600 FANTASTIC OVERVIEW OF THE 4038 02:48:19,600 --> 02:48:20,720 INCLUSION POLICY. 4039 02:48:20,720 --> 02:48:23,040 NOT ONLY THE LIFE-SPAN OF 4040 02:48:23,040 --> 02:48:25,360 MINIMUM AS WELL AS MINORITY 4041 02:48:25,360 --> 02:48:27,680 POPULATIONS. 4042 02:48:27,680 --> 02:48:29,720 IF WE CAN GET DR. ROSSER TEED 4043 02:48:29,720 --> 02:48:32,800 UP. 4044 02:48:32,800 --> 02:48:33,560 >> GOOD AFTERNOON. 4045 02:48:33,560 --> 02:48:37,800 THANK YOU SO MUCH. 4046 02:48:37,800 --> 02:48:40,560 >> AND JUST A DISCLAIMER PLEASE 4047 02:48:40,560 --> 02:48:43,320 TRY TO PACE YOURSELF AS THEY ARE 4048 02:48:43,320 --> 02:48:45,520 TRAVELING ABOUT TWO TO THREE 4049 02:48:45,520 --> 02:48:47,000 SENTENCES BEHIND US AND THEY 4050 02:48:47,000 --> 02:48:50,160 NEED EXTRA TIME FOR GRAPHICS. 4051 02:48:50,160 --> 02:48:53,160 TO REMIND YOU BUT TO REMIND 4052 02:48:53,160 --> 02:48:54,760 MYSELF. 4053 02:48:54,760 --> 02:48:55,160 >> THANK YOU. 4054 02:48:55,160 --> 02:48:57,120 THANK YOU FOR THE INVITATION TO 4055 02:48:57,120 --> 02:48:59,320 BE HERE AND I WILL SAY I'M A 4056 02:48:59,320 --> 02:49:01,160 FAST TALKER. 4057 02:49:01,160 --> 02:49:04,160 SO THIS WILL BE VERY DIFFICULT 4058 02:49:04,160 --> 02:49:07,040 FOR ME TO SLOW DOWN BUT I WILL 4059 02:49:07,040 --> 02:49:08,120 TRY MY BEST. 4060 02:49:08,120 --> 02:49:09,600 AGAIN, THANK YOU FOR HAVING ME 4061 02:49:09,600 --> 02:49:11,520 JOIN YOU THIS AFTERNOON TO TALK 4062 02:49:11,520 --> 02:49:15,680 A LITTLE BIT ABOUT THE DOWN 4063 02:49:15,680 --> 02:49:16,880 SYNDROME 360 PROJECT AND 4064 02:49:16,880 --> 02:49:23,480 DIVERSITY IN DOWN SYNDROME. 4065 02:49:23,480 --> 02:49:25,600 SO WHY IS DIVERSITY IN RESEARCH 4066 02:49:25,600 --> 02:49:27,160 SO IMPORTANT? 4067 02:49:27,160 --> 02:49:29,920 I THINK WE'VE ALREADY HEARD MANY 4068 02:49:29,920 --> 02:49:32,200 OF THESE ITEMS PRESENTED ON THE 4069 02:49:32,200 --> 02:49:34,440 SLIDE HERE IN EARLIER TALKS 4070 02:49:34,440 --> 02:49:35,520 TODAY. 4071 02:49:35,520 --> 02:49:37,640 CERTAINLY THE HISTORICAL 4072 02:49:37,640 --> 02:49:39,240 EXCLUSION OF SOME COMMUNITIES. 4073 02:49:39,240 --> 02:49:42,960 THE NEED TO HAVE ALL THE PIECES 4074 02:49:42,960 --> 02:49:45,520 OF A PUZZLE TO BE ABLE TO DRAW 4075 02:49:45,520 --> 02:49:47,320 ANY ADEQUATE CONCLUSIONS FROM 4076 02:49:47,320 --> 02:49:49,680 YOUR DATA. 4077 02:49:49,680 --> 02:49:51,720 INDIVIDUAL DIFFERENCES REALLY DO 4078 02:49:51,720 --> 02:49:53,120 MATTER AND THEY ARE VERY 4079 02:49:53,120 --> 02:49:54,760 IMPORTANT WHEN YOU START 4080 02:49:54,760 --> 02:49:56,680 ANALYZING THAT DATA. AND I 4081 02:49:56,680 --> 02:50:00,240 THINK AS WE MOVE MORE TOWARDS AN 4082 02:50:00,240 --> 02:50:03,000 AREA OF PERSONALIZED MEDICINE IN 4083 02:50:03,000 --> 02:50:04,720 TRYING TO EXPLAIN WHAT THAT 4084 02:50:04,720 --> 02:50:07,000 MIGHT MEAN TO A PARTICIPANT I 4085 02:50:07,000 --> 02:50:09,040 ALWAYS LIKE TO USE THE EXAMPLE 4086 02:50:09,040 --> 02:50:10,840 OF EYEGLASSES. 4087 02:50:10,840 --> 02:50:13,640 THAT IS SOMETHING THAT HAS BEEN 4088 02:50:13,640 --> 02:50:15,960 PERSONALIZED TO PARTICIPANTS AND 4089 02:50:15,960 --> 02:50:18,360 PATIENTS FOR MANY, MANY YEARS 4090 02:50:18,360 --> 02:50:20,960 SO, THAT IS NOT A NEW CONSENT TO 4091 02:50:20,960 --> 02:50:21,520 THEM. 4092 02:50:21,520 --> 02:50:23,480 AND THEN OF COURSE AS WE'VE 4093 02:50:23,480 --> 02:50:27,160 MENTIONED EARLIER TODAY HEALTH 4094 02:50:27,160 --> 02:50:27,760 DISPARITIES. 4095 02:50:27,760 --> 02:50:29,920 WHY IS IT SO IMPORTANT TO HAVE 4096 02:50:29,920 --> 02:50:31,920 EVERYONE INCLUDED TO BE ABLE TO 4097 02:50:31,920 --> 02:50:33,720 TEASE OUT THOSE DIFFERENCES 4098 02:50:33,720 --> 02:50:37,360 WHETHER IT BE RELATED TO RACE OR 4099 02:50:37,360 --> 02:50:40,040 ETHNICITY OR RELATED TO SOCIAL 4100 02:50:40,040 --> 02:50:41,240 DETERMINANTS OF HEALTH OR 4101 02:50:41,240 --> 02:50:47,800 ENVIRONMENTAL EXPOSURES. 4102 02:50:47,800 --> 02:50:50,400 SO, I'M GOING TO TELL YOU A 4103 02:50:50,400 --> 02:50:52,280 LITTLE HOW RACE AND ETHNICITY 4104 02:50:52,280 --> 02:50:54,960 DOES PLAY A ROLE IN MEDICAL 4105 02:50:54,960 --> 02:50:56,280 OUTCOMES IN DOWN SYNDROME. 4106 02:50:56,280 --> 02:51:00,160 AND WE'LL TALK ABOUT THAT AND 4107 02:51:00,160 --> 02:51:02,000 SOME OF THE DIVERSITY THAT WE 4108 02:51:02,000 --> 02:51:05,840 SEE IN OUR DS360 PROJECTS. 4109 02:51:05,840 --> 02:51:10,160 I FLANK THE DNA STRAND FROM THE 4110 02:51:10,160 --> 02:51:12,080 INCIDENTS OF BIRTH AND TO THE 4111 02:51:12,080 --> 02:51:13,520 LIFE EXPECTANCY. 4112 02:51:13,520 --> 02:51:17,000 IF YOU LOOK AT BIRTH THERE IS A 4113 02:51:17,000 --> 02:51:18,200 HIGHER BIRTH RATE OF DOWN 4114 02:51:18,200 --> 02:51:21,720 SYNDROME IF THE FAMILY IS OF 4115 02:51:21,720 --> 02:51:22,240 HISPANIC ETHNICITY. 4116 02:51:22,240 --> 02:51:25,040 THAT MAY NOT BE RELATED TO 4117 02:51:25,040 --> 02:51:26,680 GENETICS BUT MORE RELATED TO 4118 02:51:26,680 --> 02:51:27,880 ACCESS TO HEALTH CARE. 4119 02:51:27,880 --> 02:51:31,480 OR THOSE SOCIAL DETERMINANTS OF 4120 02:51:31,480 --> 02:51:33,000 HEALTH THAT I MENTIONED EARLIER. 4121 02:51:33,000 --> 02:51:35,760 IF WE'RE THINKING ALONG THE 4122 02:51:35,760 --> 02:51:38,920 LINES OF HOW GENES AND 4123 02:51:38,920 --> 02:51:40,920 ENVIRONMENT CAN IMPACT THEN RACE 4124 02:51:40,920 --> 02:51:42,800 AND ETHNICITY CERTAINLY PLAY A 4125 02:51:42,800 --> 02:51:44,160 ROLE IN CERTAIN MEDICAL 4126 02:51:44,160 --> 02:51:45,560 CONDITIONS. 4127 02:51:45,560 --> 02:51:46,840 SUCH AS LEUKEMIA WHERE THERE IS 4128 02:51:46,840 --> 02:51:51,560 A HIGHER RISK OF AMKL IF YOU'RE 4129 02:51:51,560 --> 02:51:52,320 HISPANIC. 4130 02:51:52,320 --> 02:51:55,320 -- SHOWS A HIGHER RISK IF YOU'RE 4131 02:51:55,320 --> 02:51:56,200 HISPANIC. 4132 02:51:56,200 --> 02:51:59,200 IN CONGENITAL HEART DISEASE -- 4133 02:51:59,200 --> 02:52:02,560 YOU HAVE A HIGHER RISK OF CHD IF 4134 02:52:02,560 --> 02:52:05,480 YOU COME FROM BLACK ANCESTRY BUT 4135 02:52:05,480 --> 02:52:08,240 LESS IF YOU COME FROM HISPANIC 4136 02:52:08,240 --> 02:52:08,800 ETHNICITY. 4137 02:52:08,800 --> 02:52:11,920 AND WITH GI WITH CERTAIN TYPES 4138 02:52:11,920 --> 02:52:15,120 OF GI DEFECTS IT CAN VARY AND 4139 02:52:15,120 --> 02:52:18,000 YOU CAN HAVE A HIGHER RISK IF 4140 02:52:18,000 --> 02:52:21,280 YOU'RE HISPANIC OR ASIAN. 4141 02:52:21,280 --> 02:52:23,960 AND THEN AS WAS SHOWN EARLIER 4142 02:52:23,960 --> 02:52:26,240 TODAY LIFE EXPECTANCY IS 4143 02:52:26,240 --> 02:52:27,480 CERTAINLY IMPACTED. 4144 02:52:27,480 --> 02:52:30,120 IF YOU COME FROM A BLACK 4145 02:52:30,120 --> 02:52:32,400 ANCESTRY AND AGAIN THAT IS NOT 4146 02:52:32,400 --> 02:52:35,360 NECESSARILY ALL GENETICS RELATED 4147 02:52:35,360 --> 02:52:36,960 BUT COULD BE RELATED TO OTHER 4148 02:52:36,960 --> 02:52:39,600 HEALTH DISPARITIES. 4149 02:52:39,600 --> 02:52:45,920 7 THIS SLIDE WAS PULLED FROM THE 4150 02:52:45,920 --> 02:52:48,280 SAME NIH REPORT THAT DAWN JUST 4151 02:52:48,280 --> 02:52:49,280 MENTIONED EARLIER. 4152 02:52:49,280 --> 02:52:51,520 I'M JUST DISPLAYING IT 4153 02:52:51,520 --> 02:52:52,000 DIFFERENTLY. 4154 02:52:52,000 --> 02:52:56,440 AND I TOOK THE NUMBERS BASED ON 4155 02:52:56,440 --> 02:52:58,200 PARTICIPANTS THAT DID REPORT 4156 02:52:58,200 --> 02:53:00,200 RACE AND ETHNICITY. 4157 02:53:00,200 --> 02:53:03,960 SO YOU CAN SEE THE RACIAL BREAK 4158 02:53:03,960 --> 02:53:06,200 DOWN HERE WHERE CURRENTLY IN THE 4159 02:53:06,200 --> 02:53:09,480 NIH CLINICAL RESEARCH PROJECTS 4160 02:53:09,480 --> 02:53:11,360 FOR 2021 WE DEFINITELY SEE A 4161 02:53:11,360 --> 02:53:13,680 HIGHER INCLUSION OF WHITE 4162 02:53:13,680 --> 02:53:17,360 PARTICIPANTS AND THESE ARE 4163 02:53:17,360 --> 02:53:18,160 SELF-IDENTIFYING. 4164 02:53:18,160 --> 02:53:20,560 THAN WE DO OF THE OTHER RACIAL 4165 02:53:20,560 --> 02:53:21,240 GROUPS. 4166 02:53:21,240 --> 02:53:23,600 AND THEN FOR HISPANIC WE SEE 4167 02:53:23,600 --> 02:53:27,960 ABOUT A 16% REPRESENTATION OF 4168 02:53:27,960 --> 02:53:29,920 THOSE THAT ARE REPORTING 4169 02:53:29,920 --> 02:53:32,760 HISPANIC ETHNICITY COMPARED WITH 4170 02:53:32,760 --> 02:53:34,040 NONHISPANIC OF 81%. 4171 02:53:34,040 --> 02:53:36,280 SO I WANTED TO SHOW YOU THIS 4172 02:53:36,280 --> 02:53:38,440 SAME GRAPHIC COMPARING OUR 4173 02:53:38,440 --> 02:53:41,360 RESEARCH GROUP HERE IN BASED ON 4174 02:53:41,360 --> 02:53:48,160 EMORY WITH THE DS360 WORK. 4175 02:53:48,160 --> 02:53:51,280 SO THIS JUST SHOWS US WHERE OUR 4176 02:53:51,280 --> 02:53:53,240 DS STUDIES FALL INTO THAT. 4177 02:53:53,240 --> 02:53:55,160 AGAIN WE SEE ABOUT THE SAME 4178 02:53:55,160 --> 02:53:56,400 NUMBERS. 4179 02:53:56,400 --> 02:53:58,240 WE'RE NOT FAR OFF FROM WHAT 4180 02:53:58,240 --> 02:54:01,520 WE'RE SEEING IN CLINICAL TRIALS 4181 02:54:01,520 --> 02:54:04,160 AND CLINICAL RESEARCH OVER-ALL. 4182 02:54:04,160 --> 02:54:06,720 IS THAT A GOOD THING? 4183 02:54:06,720 --> 02:54:08,240 I'M NOT SO SURE. 4184 02:54:08,240 --> 02:54:10,920 WE CAN SAY YES WE'RE RIGHT THERE 4185 02:54:10,920 --> 02:54:12,160 WITH EVERYONE ELSE BUT THERE IS 4186 02:54:12,160 --> 02:54:14,600 STILL A LOT OF ROOM FOR 4187 02:54:14,600 --> 02:54:15,920 IMPROVEMENT. AND JUST TO GIVE 4188 02:54:15,920 --> 02:54:17,640 YOU AN IDEA OF WHAT THIS LOOKS 4189 02:54:17,640 --> 02:54:24,360 LIKE FOR THE CENSUS DATA -- THIS 4190 02:54:24,360 --> 02:54:27,000 SHOWS THE DIVERSITY IN THE U.S. 4191 02:54:27,000 --> 02:54:30,480 BASED ON CENSUS DATA FROM 2010 4192 02:54:30,480 --> 02:54:31,720 AND FROM 2020. 4193 02:54:31,720 --> 02:54:34,760 AND AS YOU CAN SEE WE HAVE 4194 02:54:34,760 --> 02:54:37,160 INCREASED ACROSS THE U.S. IN 4195 02:54:37,160 --> 02:54:38,800 DIVERSITY A BIT. 4196 02:54:38,800 --> 02:54:41,680 AND THESE NUMBERS ARE STILL VERY 4197 02:54:41,680 --> 02:54:43,640 REFLECTIVE OF THE SAME NUMBERS 4198 02:54:43,640 --> 02:54:45,040 WE JUST SAW IN THE CLINICAL 4199 02:54:45,040 --> 02:54:46,320 RESEARCH PROJECTS. 4200 02:54:46,320 --> 02:54:48,320 BUT I ALSO WANT TO CHALLENGE 4201 02:54:48,320 --> 02:54:49,880 EVERYONE THAT THAT IS NOT GOOD 4202 02:54:49,880 --> 02:54:50,280 ENOUGH. 4203 02:54:50,280 --> 02:54:52,080 WE NEED TO INCREASE THESE 4204 02:54:52,080 --> 02:54:53,560 PERCENTAGES IN OUR RESEARCH 4205 02:54:53,560 --> 02:54:58,720 STUDIES. 4206 02:54:58,720 --> 02:55:00,960 SO JUST TO GIVE YOU A LITTLE 4207 02:55:00,960 --> 02:55:03,040 MORE INFORMATION ABOUT THE DOWN 4208 02:55:03,040 --> 02:55:04,760 SYNDROME RESEARCH STUDIES AT 4209 02:55:04,760 --> 02:55:05,440 EMORY. 4210 02:55:05,440 --> 02:55:07,200 WE HAVE BEEN CONDUCTING RESEARCH 4211 02:55:07,200 --> 02:55:09,480 HERE FOR QUITE SOME TIME. 4212 02:55:09,480 --> 02:55:12,400 STARTED BACK IN THE EARLY 4213 02:55:12,400 --> 02:55:14,720 1990s WITH THE ATLANTA DOWN 4214 02:55:14,720 --> 02:55:15,640 SYNDROME PROJECT. 4215 02:55:15,640 --> 02:55:18,280 WE JUST COVERED THE FIVE COUNTY 4216 02:55:18,280 --> 02:55:19,920 METRO AREA IN ATLANTA. 4217 02:55:19,920 --> 02:55:23,520 THAT WAS EXPANDED AROUND 2000 TO 4218 02:55:23,520 --> 02:55:26,360 THE NATIONAL DOWN SYNDROME 4219 02:55:26,360 --> 02:55:28,920 PROJECT WHICH ENCOMPASSES 6 4220 02:55:28,920 --> 02:55:30,480 STATES ACROSS THE UNITED STATES 4221 02:55:30,480 --> 02:55:32,600 AND WAS A POPULATION BASED 4222 02:55:32,600 --> 02:55:36,520 PROJECT. 4223 02:55:36,520 --> 02:55:39,560 AND AFTER THAT PROJECT CONCLUDED 4224 02:55:39,560 --> 02:55:41,440 WE CONTINUED WITH THE SAME GOALS 4225 02:55:41,440 --> 02:55:44,840 IN MIND BUT RETREATED BACK TO 4226 02:55:44,840 --> 02:55:47,520 BEING BASED AT EMORY WITH THE 4227 02:55:47,520 --> 02:55:49,480 EMORY DOWN SYNDROME PROJECT. 4228 02:55:49,480 --> 02:55:51,000 BUT ALSO SINCE WE WERE ABLE TO 4229 02:55:51,000 --> 02:55:54,240 DO MANY THINGS ON-LINE AT THAT 4230 02:55:54,240 --> 02:55:55,920 POINT ALTHOUGH IT WAS ATLANTA 4231 02:55:55,920 --> 02:55:58,800 BASED WE DID OVEN ROLEMENT 4232 02:55:58,800 --> 02:55:59,280 NATIONWIDE. 4233 02:55:59,280 --> 02:56:01,840 A COUPLE OF THE SUB STUDIES THAT 4234 02:56:01,840 --> 02:56:04,360 WE HAVE COMPLETED OVER THE YEAR 4235 02:56:04,360 --> 02:56:07,560 * WERE THE DOWN SYNDROME CHC 4236 02:56:07,560 --> 02:56:10,240 STUDY WHICH LOOKED AT CONGENITAL 4237 02:56:10,240 --> 02:56:11,440 HEART DEFECTS. 4238 02:56:11,440 --> 02:56:13,760 AS WELL AS THE DOWN SYNDROME 4239 02:56:13,760 --> 02:56:15,400 COGNITION PROJECT WHICH ALSO 4240 02:56:15,400 --> 02:56:18,880 INVOLVED MULTIPLE SITES ACROSS 4241 02:56:18,880 --> 02:56:22,080 THE U.S. 4242 02:56:22,080 --> 02:56:25,520 SO I WANT TO DO A SIDE MENTION 4243 02:56:25,520 --> 02:56:29,480 OF THE DIVERSITY IN INCLUDING 4244 02:56:29,480 --> 02:56:31,200 PARTICIPANTS IN RESEARCH IS 4245 02:56:31,200 --> 02:56:32,240 EXTREMELY IMPORTANT AND THAT IS 4246 02:56:32,240 --> 02:56:33,760 WHY WE'RE HERE. 4247 02:56:33,760 --> 02:56:35,840 BUT IT'S ALSO IMPORTANT TO HAVE 4248 02:56:35,840 --> 02:56:37,440 DIVERSITY IN THE DATA TYPES THAT 4249 02:56:37,440 --> 02:56:38,880 WE ARE COLLECTING AS 4250 02:56:38,880 --> 02:56:39,320 RESEARCHERS. 4251 02:56:39,320 --> 02:56:41,520 TO BE ABLE TO IDENTIFY THOSE 4252 02:56:41,520 --> 02:56:44,240 RISK FACTORS. 4253 02:56:44,240 --> 02:56:47,200 SO THIS SLIDE GIVES YOU AN IDEA 4254 02:56:47,200 --> 02:56:48,800 OF THE TOTAL PARTICIPANTS WE 4255 02:56:48,800 --> 02:56:50,240 HAVE IN OUR STUDIES AND THE 4256 02:56:50,240 --> 02:56:52,000 TYPES OF DATA THAT WE HAVE 4257 02:56:52,000 --> 02:56:54,880 COLLECTED FROM THOSE 4258 02:56:54,880 --> 02:56:55,760 PARTICIPANTS. 4259 02:56:55,760 --> 02:56:58,080 THERE IS SURVEY DATA. 4260 02:56:58,080 --> 02:57:00,240 WE HAVE TRANSITIONED OVER TIME 4261 02:57:00,240 --> 02:57:02,280 TO AN ON-LINE SURVEY WHICH 4262 02:57:02,280 --> 02:57:03,960 ALLOWS US TO REACH MORE 4263 02:57:03,960 --> 02:57:05,920 PARTICIPANTS ACROSS THE U.S. AS 4264 02:57:05,920 --> 02:57:08,640 WELL AS RURAL PARTICIPANTS. 4265 02:57:08,640 --> 02:57:13,000 WE COLLECT SAMPLES, BLOOD 4266 02:57:13,000 --> 02:57:14,600 SAMPLES AND SAY LIVE AFTER 4267 02:57:14,600 --> 02:57:16,520 SAMPLES WHICH ALSO ALLOWED US TO 4268 02:57:16,520 --> 02:57:18,160 MOVE TOWARD A COLLECTION AT 4269 02:57:18,160 --> 02:57:18,560 HOME. 4270 02:57:18,560 --> 02:57:22,360 SO YOU DIDN'T HAVE TO GO IN TO A 4271 02:57:22,360 --> 02:57:24,120 DOCTOR'S OFFICE TO GET BLOOD 4272 02:57:24,120 --> 02:57:24,320 DRAWN. 4273 02:57:24,320 --> 02:57:28,640 YOU CAN HAVE THE SALIVA KIT SENT 4274 02:57:28,640 --> 02:57:31,040 TO YOUR HOME ADDRESS AND 4275 02:57:31,040 --> 02:57:32,800 COMPLETE IT AND MAIL IT BACK US 4276 02:57:32,800 --> 02:57:33,680 TO. 4277 02:57:33,680 --> 02:57:39,400 WE HAVE SEQUENCING DATE AND 4278 02:57:39,400 --> 02:57:41,080 MEDICAL DATA. IT'S IMPORTANT TO 4279 02:57:41,080 --> 02:57:42,720 HAVE THOSE PHENOTYPES THAT WE 4280 02:57:42,720 --> 02:57:45,920 CAN USE TO CONNECT WITH THE 4281 02:57:45,920 --> 02:57:48,840 GENETIC DATA. AND THEN WE HAVE 4282 02:57:48,840 --> 02:57:52,880 COGNITIVE TESTING ON ABOUT 338 4283 02:57:52,880 --> 02:57:59,920 OF OUR PARTICIPANTS. 4284 02:57:59,920 --> 02:58:02,160 SO OUT OF THE WORK WITH THE 4285 02:58:02,160 --> 02:58:04,440 NATIONAL DOWN SYNDROME PROJECT I 4286 02:58:04,440 --> 02:58:06,360 WANTED TO DRAW YOUR ATTENTION TO 4287 02:58:06,360 --> 02:58:08,680 TWO THINGS THAT WE NOTICED THERE 4288 02:58:08,680 --> 02:58:10,680 IN RELATION TO THE CONGENITAL 4289 02:58:10,680 --> 02:58:12,520 HEART DEFECTS AND THIS GOES BACK 4290 02:58:12,520 --> 02:58:15,400 TO THE DIFFERENCES IN GENETIC 4291 02:58:15,400 --> 02:58:16,000 BACKGROUNDS. 4292 02:58:16,000 --> 02:58:19,120 THAT CAN CAUSE INCREASED RISK 4293 02:58:19,120 --> 02:58:20,640 FOR A MEDICAL CONDITION. 4294 02:58:20,640 --> 02:58:25,160 AND IN THIS CASE WE LOOKED AT 4295 02:58:25,160 --> 02:58:28,040 GENDER AND MALE AND FEMALE -- 4296 02:58:28,040 --> 02:58:29,600 SEX AND WE NOTICED THAT THERE 4297 02:58:29,600 --> 02:58:32,280 WAS A HIGHER RISK IF YOU WERE 4298 02:58:32,280 --> 02:58:33,160 FEMALE. 4299 02:58:33,160 --> 02:58:36,200 TO HAVE A CONGENITAL HEART 4300 02:58:36,200 --> 02:58:37,400 DEFECT. 4301 02:58:37,400 --> 02:58:39,280 SPECIFICALLY AN AVSD. 4302 02:58:39,280 --> 02:58:42,640 WE ALSO LOOKED ACROSS RACES 4303 02:58:42,640 --> 02:58:44,080 BLACK, HISPANIC AND ASIAN AND 4304 02:58:44,080 --> 02:58:45,880 HERE IS WHERE WE SAW THERE WAS 4305 02:58:45,880 --> 02:58:49,440 AN INCREASED RISK IF YOU HAVE 4306 02:58:49,440 --> 02:58:53,160 BLACK ANCESTRY BUT DECREASED IF 4307 02:58:53,160 --> 02:58:57,240 YOU WERE HISPANIC ETHNICITY. 4308 02:58:57,240 --> 02:58:59,520 WE ALSO LOOKED AT SPECIFIC TYPES 4309 02:58:59,520 --> 02:59:01,560 OF GI DEFECTS. 4310 02:59:01,560 --> 02:59:04,400 HOWEVER, OUR SAMPLE SIZES WERE 4311 02:59:04,400 --> 02:59:07,120 TOO SMALL TO BE ABLE TO SHOW ANY 4312 02:59:07,120 --> 02:59:09,280 STATISTICAL SIGNIFICANCE IN 4313 02:59:09,280 --> 02:59:09,680 THESE. 4314 02:59:09,680 --> 02:59:13,240 BUT AS YOU CAN SEE JUST WITH 4315 02:59:13,240 --> 02:59:15,320 THESE THREE TYPES OF GI DEFECTS 4316 02:59:15,320 --> 02:59:18,880 WE WERE ABLE TO SHOW THAT AGE 4317 02:59:18,880 --> 02:59:21,080 MATTERED WITH THE AGE OF THE MOM 4318 02:59:21,080 --> 02:59:23,520 WHEN SHE HAD THE CHILD WITH DOWN 4319 02:59:23,520 --> 02:59:24,920 SYNDROME. 4320 02:59:24,920 --> 02:59:26,720 SEX MATTERED WHETHER THE CHILD 4321 02:59:26,720 --> 02:59:29,920 WAS FEMALE OR MALE. 4322 02:59:29,920 --> 02:59:31,440 DEPENDING ON THE DISEASE AND 4323 02:59:31,440 --> 02:59:34,680 THEN ANCESTRY ALSO PLAYED A ROLE 4324 02:59:34,680 --> 02:59:39,400 IN ALL THREE OF THESE IN 4325 02:59:39,400 --> 02:59:40,960 INCREASING RISK FOR THESE TYPES 4326 02:59:40,960 --> 02:59:43,240 OF GI EFFECTS. 4327 02:59:43,240 --> 02:59:45,720 WE WOULD LIKE TO EXTEND THIS 4328 02:59:45,720 --> 02:59:47,480 RESEARCH AND COLLECT ADDITIONAL 4329 02:59:47,480 --> 02:59:49,600 FAMILIES TO SEE IF THOSE RISK 4330 02:59:49,600 --> 02:59:52,600 CHANGES THAT WE SAW ARE ACTUALLY 4331 02:59:52,600 --> 02:59:57,120 STATISTICALLY SIGNIFICANT. 4332 02:59:57,120 --> 02:59:59,120 SO, THAT IS WHERE WE HIT THE 4333 02:59:59,120 --> 03:00:00,760 BARRIERS TO PARTICIPATION IN 4334 03:00:00,760 --> 03:00:01,320 RESEARCH. 4335 03:00:01,320 --> 03:00:02,840 AND AGAIN I THINK MOST OF THESE 4336 03:00:02,840 --> 03:00:04,960 WE HAVE HEARD ABOUT ALREADY 4337 03:00:04,960 --> 03:00:05,640 TODAY. 4338 03:00:05,640 --> 03:00:08,920 BUT WE SEE THOSE TIME AND TIME 4339 03:00:08,920 --> 03:00:10,160 AGAIN. 4340 03:00:10,160 --> 03:00:11,400 FAMILY INVOLVEMENT, HOW MUCH 4341 03:00:11,400 --> 03:00:13,000 TIME IS INVOLVED. 4342 03:00:13,000 --> 03:00:14,920 WHO'S GOING TO HAVE TO BE THERE 4343 03:00:14,920 --> 03:00:17,120 HAVING THE ADDITIONAL SUPPORT AT 4344 03:00:17,120 --> 03:00:19,520 A VISIT. 4345 03:00:19,520 --> 03:00:20,400 INCENTIVES. 4346 03:00:20,400 --> 03:00:22,360 WE CANNOT SPEAK TO THAT ENOUGH 4347 03:00:22,360 --> 03:00:24,000 AND I NOTICED IN THE CHAT THAT 4348 03:00:24,000 --> 03:00:26,280 IT WAS MENTIONED THAT INCENTIVE 4349 03:00:26,280 --> 03:00:31,440 IS NOT JUST -- AN INCENTIVE AS 4350 03:00:31,440 --> 03:00:32,320 COMPLETION AT THE END OF THE 4351 03:00:32,320 --> 03:00:33,240 STUDY. 4352 03:00:33,240 --> 03:00:35,120 HERE IS YOUR GIFT CARD OR MONEY 4353 03:00:35,120 --> 03:00:37,880 FOR DOING THE STUDY BUT ALSO DO 4354 03:00:37,880 --> 03:00:41,960 YOU PROVIDE RIDE SHARE TO YOUR 4355 03:00:41,960 --> 03:00:43,520 FACILITY SO A FAMILY CAN 4356 03:00:43,520 --> 03:00:45,000 COMPLETE THE STUDY? 4357 03:00:45,000 --> 03:00:46,800 DO YOU PROVIDE LUNCH? 4358 03:00:46,800 --> 03:00:48,280 DO YOU PROVIDE THOSE OTHER 4359 03:00:48,280 --> 03:00:50,640 THINGS THAT MIGHT BE NEEDED IF 4360 03:00:50,640 --> 03:00:52,400 THEY ARE THERE ALL DAY AND 4361 03:00:52,400 --> 03:00:55,720 INVOLVED IN YOUR STUDY? 4362 03:00:55,720 --> 03:00:57,400 THE THIRD THING INFORMATION 4363 03:00:57,400 --> 03:00:58,200 LEARNED. 4364 03:00:58,200 --> 03:00:59,680 IS THIS GOING TO BE SOMETHING 4365 03:00:59,680 --> 03:01:02,400 THAT THE FAMILIES ARE GOING TO 4366 03:01:02,400 --> 03:01:03,960 GET RESULTS BACK THAT THEY CAN 4367 03:01:03,960 --> 03:01:06,720 USE. 4368 03:01:06,720 --> 03:01:08,760 AND IF NOT JUST ARE THEY GOING 4369 03:01:08,760 --> 03:01:10,480 TO GET ANY INFORMATION BACK 4370 03:01:10,480 --> 03:01:12,040 ABOUT THE STUDY AND ABOUT THE 4371 03:01:12,040 --> 03:01:14,080 RESULTS? 4372 03:01:14,080 --> 03:01:16,080 AND I MENTIONED THE TIME 4373 03:01:16,080 --> 03:01:17,800 INVOLVED AND IT'S NOT JUST FOR 4374 03:01:17,800 --> 03:01:20,480 THE SPECIFIC VISIT BUT ARE THEY 4375 03:01:20,480 --> 03:01:21,680 GOING TO BE INVOLVED IN THE 4376 03:01:21,680 --> 03:01:23,440 STUDY FOR YEARS? 4377 03:01:23,440 --> 03:01:25,160 WILL THEY NEED TO COME IN 4378 03:01:25,160 --> 03:01:26,280 MULTIPLE TIMES? 4379 03:01:26,280 --> 03:01:28,920 ALL OF THOSE WE HAVE SEEN ARE 4380 03:01:28,920 --> 03:01:30,960 BARRIERS BUT I DO THINK A NUMBER 4381 03:01:30,960 --> 03:01:33,560 OF THESE CAN BE ADDRESSED AND 4382 03:01:33,560 --> 03:01:36,720 CAN BE OVERCOME. 4383 03:01:36,720 --> 03:01:39,680 I'M GOING TO SWITCH HATS AND 4384 03:01:39,680 --> 03:01:42,880 TALK TO YOU ABOUT MY OTHER ROLE 4385 03:01:42,880 --> 03:01:45,760 AS THE EMORY PI FOR THE ALL OF 4386 03:01:45,760 --> 03:01:49,200 US RESEARCH STUDY. 4387 03:01:49,200 --> 03:01:52,280 SO IF YOU HAVE NOT HEARD OF ALL 4388 03:01:52,280 --> 03:01:55,720 OF US -- THE PROGRAM IS ALSO 4389 03:01:55,720 --> 03:01:58,040 FUNDED BY THE NIH AND ITS GOAL 4390 03:01:58,040 --> 03:02:00,800 IS TO ENROLL ONE MILLION OR MORE 4391 03:02:00,800 --> 03:02:02,640 PEOPLE TO HAVE ONE OF THE 4392 03:02:02,640 --> 03:02:04,680 LARGEST, RICHEST AND MOST 4393 03:02:04,680 --> 03:02:07,040 DIVERSE BIOMEDICAL DATASETS OF 4394 03:02:07,040 --> 03:02:07,720 ITS KIND. 4395 03:02:07,720 --> 03:02:09,520 ONE OF OUR GOALS IN THIS PROGRAM 4396 03:02:09,520 --> 03:02:13,320 IS TO BRING IN THOSE UNDER 4397 03:02:13,320 --> 03:02:14,440 REPRESENTED COMMUNITIES THAT 4398 03:02:14,440 --> 03:02:16,640 HAVE NOT BEEN ENGAGED IN 4399 03:02:16,640 --> 03:02:17,880 RESEARCH PREVIOUSLY AND 4400 03:02:17,880 --> 03:02:19,760 CURRENTLY WE'RE DOING A FAIRLY 4401 03:02:19,760 --> 03:02:21,160 GOOD JOB. 4402 03:02:21,160 --> 03:02:25,080 SO WE HAVE ABOUT 80% OF OUR 4403 03:02:25,080 --> 03:02:26,600 PARTICIPANTS THAT ARE IDENTIFIED 4404 03:02:26,600 --> 03:02:28,600 AS COMING FROM AN UNDER 4405 03:02:28,600 --> 03:02:29,840 REPRESENTED COMMUNITY. 4406 03:02:29,840 --> 03:02:33,360 AND ABOUT 50% OF THOSE 4407 03:02:33,360 --> 03:02:35,360 SELF-IDENTIFY AS SOMETHING OTHER 4408 03:02:35,360 --> 03:02:36,320 THAN CAUCASIAN. 4409 03:02:36,320 --> 03:02:39,240 SO THEY ARE A RACIAL AND ETHNIC 4410 03:02:39,240 --> 03:02:42,240 MINORITY. 4411 03:02:42,240 --> 03:02:48,240 SO ALL OF US -- HOPING TO ENABLE 4412 03:02:48,240 --> 03:02:50,560 RESEARCH DISCOVERIES THAT DRIVE 4413 03:02:50,560 --> 03:02:54,160 MORE PRECISE APPROACHES TO CARE. 4414 03:02:54,160 --> 03:02:56,040 HAVING THOSE SPECIFIC 4415 03:02:56,040 --> 03:02:57,600 PRESCRIPTION AND EYEGLASSES FOR 4416 03:02:57,600 --> 03:02:59,400 EVERYONE FOR THE DIFFERENT 4417 03:02:59,400 --> 03:03:01,040 DISEASES AND DISORDERS. 4418 03:03:01,040 --> 03:03:03,600 SO WE ENGAGE WITH PEOPLE AND 4419 03:03:03,600 --> 03:03:05,160 COMMUNITIES WHO HAVE OFTEN BEEN 4420 03:03:05,160 --> 03:03:07,640 LEFT OUT OF RESEARCH. 4421 03:03:07,640 --> 03:03:09,480 WE'RE COMBINING BOTH NOT JUST 4422 03:03:09,480 --> 03:03:11,880 THEIR SAMPLES AND THE DATA BUT 4423 03:03:11,880 --> 03:03:13,360 THE SOCIAL DETERMINANTS ON A 4424 03:03:13,360 --> 03:03:15,120 LARGE AND INCLUSIVE SCALE. 4425 03:03:15,120 --> 03:03:17,920 WE'RE PUSHING ALL OF THIS DATA 4426 03:03:17,920 --> 03:03:20,560 BACK SO THAT RESEARCHERS CAN 4427 03:03:20,560 --> 03:03:22,240 HAVE IT AND PARTICIPANTS CAN 4428 03:03:22,240 --> 03:03:22,920 HAVE IT. 4429 03:03:22,920 --> 03:03:25,280 THEY HAVE A PORTAL THAT THEY CAN 4430 03:03:25,280 --> 03:03:26,720 ACCESS AND SEE THEIR OWN 4431 03:03:26,720 --> 03:03:27,880 INDIVIDUAL DATA. 4432 03:03:27,880 --> 03:03:30,200 SOMETIMES IN REALTIME. 4433 03:03:30,200 --> 03:03:34,920 AND WE PLAN TO FOLLOW THESE 4434 03:03:34,920 --> 03:03:35,240 PARTICIPANTS. 4435 03:03:35,240 --> 03:03:37,480 THEY ARE EXPECTED TO HOPEFULLY 4436 03:03:37,480 --> 03:03:39,520 BE ENROLLED IN THE PROGRAM FOR 4437 03:03:39,520 --> 03:03:40,920 10 YEARS OR MORE. 4438 03:03:40,920 --> 03:03:43,000 AND THEY KNOW THAT GOING IN. 4439 03:03:43,000 --> 03:03:45,880 AND THEY EXPECT THAT THEY WILL 4440 03:03:45,880 --> 03:03:47,360 HAVE CONTINUED ASK FROM OUR 4441 03:03:47,360 --> 03:03:50,680 GROUPS OVER THE NEXT YEARS. 4442 03:03:50,680 --> 03:03:54,920 7 SO ALTHOUGH MY FIRST SLIDES 4443 03:03:54,920 --> 03:03:58,560 DID FOCUS ONth RACIAL AND 4444 03:03:58,560 --> 03:04:02,440 ETHNIC IDENTITIES * I WANTED TO 4445 03:04:02,440 --> 03:04:03,920 HIGHLIGHT THAT THERE ARE OTHERS 4446 03:04:03,920 --> 03:04:06,160 AS WELL AND I KNOW WE'VE HEARD 4447 03:04:06,160 --> 03:04:07,280 DEFINITELY TODAY ABOUT THE 4448 03:04:07,280 --> 03:04:09,080 ACCESS TO CARE. 4449 03:04:09,080 --> 03:04:12,200 WE'VE HEARD ABOUT GEOGRAPHY 4450 03:04:12,200 --> 03:04:14,560 RELATED TO RURAL POPULATIONS 4451 03:04:14,560 --> 03:04:16,120 VERSUS BEING NEXT DOOR TO A 4452 03:04:16,120 --> 03:04:18,120 HEALTH CARE FACILITY OR RESEARCH 4453 03:04:18,120 --> 03:04:18,800 UNIVERSITY. 4454 03:04:18,800 --> 03:04:21,440 THAT IT'S EASY TO ATTEND THOSE 4455 03:04:21,440 --> 03:04:21,880 VISITS. 4456 03:04:21,880 --> 03:04:23,880 INCOME AND EDUCATION, WE'VE 4457 03:04:23,880 --> 03:04:26,200 TALKED ABOUT PARTICIPANTS CANNOT 4458 03:04:26,200 --> 03:04:28,320 TAKE OFF DURING THE WEEK OFTEN 4459 03:04:28,320 --> 03:04:32,160 TO COME IN FOR APPOINTMENTS SO 4460 03:04:32,160 --> 03:04:33,760 SCHEDULING THOSE OUTSIDE OF WORK 4461 03:04:33,760 --> 03:04:34,840 HOURS. 4462 03:04:34,840 --> 03:04:36,520 EDUCATION, MEETING THE 4463 03:04:36,520 --> 03:04:38,080 PARTICIPANT WHERE THEY ARE ON A 4464 03:04:38,080 --> 03:04:39,600 LEVEL THAT THEY CAN UNDERSTAND. 4465 03:04:39,600 --> 03:04:42,240 NOT ONLY WHAT WE'RE ASKING OF 4466 03:04:42,240 --> 03:04:47,440 THEM IN THAT CONFORM CONSENT 4467 03:04:47,440 --> 03:04:49,360 FORM BUT ALSO IN THOSE RESULTS 4468 03:04:49,360 --> 03:04:50,640 THAT WE RETURN. 4469 03:04:50,640 --> 03:04:52,960 WE PUBLISH THESE PAPERS ALL THE 4470 03:04:52,960 --> 03:04:54,640 TIME BUT WE NEED TO MAKE SURE 4471 03:04:54,640 --> 03:04:56,280 THAT WE GIVE THOSE RESULTS BACK 4472 03:04:56,280 --> 03:04:58,520 TO THE PARTICIPANTS. 4473 03:04:58,520 --> 03:05:00,360 IN SUMMARIES THAT THEY CAN 4474 03:05:00,360 --> 03:05:08,160 UNDERSTAND. 4475 03:05:08,160 --> 03:05:10,280 SO, I JUST WANTED TO TALK A 4476 03:05:10,280 --> 03:05:13,880 LITTLE BIT ABOUT HOW ALL THE ALL 4477 03:05:13,880 --> 03:05:15,720 OF US PROGRAM IS ACCOMPLISHING 4478 03:05:15,720 --> 03:05:16,120 THIS. 4479 03:05:16,120 --> 03:05:18,240 HOW DO WE HAVE THE 80% 4480 03:05:18,240 --> 03:05:21,040 REPRESENTATION AND THE 50% 4481 03:05:21,040 --> 03:05:23,280 RACIAL AND ETHNIC PARTICIPATION? 4482 03:05:23,280 --> 03:05:25,480 WE TRY TO EMPOWER THE 4483 03:05:25,480 --> 03:05:25,880 PARTICIPANT. 4484 03:05:25,880 --> 03:05:28,200 IT IS IN OUR CORE VALUES THAT 4485 03:05:28,200 --> 03:05:30,960 PARTICIPATION IS OPEN TO ALL AND 4486 03:05:30,960 --> 03:05:32,720 THAT PARTICIPANTS ARE PARTNERS. 4487 03:05:32,720 --> 03:05:35,000 THAT WE ARE NOT GOING INTO THE 4488 03:05:35,000 --> 03:05:36,800 COMMUNITIES AND USING THEM FOR 4489 03:05:36,800 --> 03:05:37,680 OUR RESEARCH. 4490 03:05:37,680 --> 03:05:39,760 THEY REALLY ARE PARTNERS IN THIS 4491 03:05:39,760 --> 03:05:41,640 RESEARCH. 4492 03:05:41,640 --> 03:05:43,560 THE PARTICIPANTS HAVE ACCESS TO 4493 03:05:43,560 --> 03:05:45,000 THEIR INFORMATION. 4494 03:05:45,000 --> 03:05:46,800 I KNOW SOMETIMES DEPENDING ON 4495 03:05:46,800 --> 03:05:48,720 THE RESEARCH STUDY AND THE 4496 03:05:48,720 --> 03:05:50,600 MEASURES BEING TESTED OR BEING 4497 03:05:50,600 --> 03:05:54,760 USED THAT HERE NOT VALIDATED 4498 03:05:54,760 --> 03:05:57,360 THAT YOU CANNOT ALWAYS RETURN 4499 03:05:57,360 --> 03:05:59,240 SPECIFIC RESULTS TO EACH 4500 03:05:59,240 --> 03:06:01,760 PARTICIPANTS BUT THERE HAS TO BE 4501 03:06:01,760 --> 03:06:05,440 SOME TYPE OF SUMMARY RESULTS SO 4502 03:06:05,440 --> 03:06:08,880 THAT THEY GET SOMETHING BACK AND 4503 03:06:08,880 --> 03:06:10,760 TRANSPARENCY EARNS TRUST. 4504 03:06:10,760 --> 03:06:13,280 WE'VE HEARD THAT SO MANY TIMES 4505 03:06:13,280 --> 03:06:14,280 TODAYS BUT IT IS TRUE. 4506 03:06:14,280 --> 03:06:15,720 YOU NEED TO BE TRANSPARENT ABOUT 4507 03:06:15,720 --> 03:06:17,960 WHAT YOU'RE DOING AND IN 4508 03:06:17,960 --> 03:06:19,520 RETURNING THAT INFORMATION BACK 4509 03:06:19,520 --> 03:06:21,720 AND TRANSPARENT ABOUT THE 4510 03:06:21,720 --> 03:06:23,720 PROBLEMS THAT HAVE BEEN IN 4511 03:06:23,720 --> 03:06:25,640 RESEARCH BEFORE AND WHY THAT 4512 03:06:25,640 --> 03:06:27,760 MIGHT MAKE SOMEONE HESITANT TO 4513 03:06:27,760 --> 03:06:33,400 BE INVOLVED IN YOUR STUDY. 4514 03:06:33,400 --> 03:06:36,160 THE PROGRAM PROVIDES EDUCATION 4515 03:06:36,160 --> 03:06:38,040 FOR PARTICIPANTS AND I DON'T 4516 03:06:38,040 --> 03:06:39,520 EXPECT YOU TO BE ABLE TO READ 4517 03:06:39,520 --> 03:06:41,480 THIS BECAUSE I KNOW IT'S SMALL 4518 03:06:41,480 --> 03:06:42,320 FONT. 4519 03:06:42,320 --> 03:06:45,080 IT WAS TO GIVE YOU AN EXAMPLE OF 4520 03:06:45,080 --> 03:06:46,280 SOME OF THE MATERIALS THAT WE 4521 03:06:46,280 --> 03:06:48,240 HAVE. 4522 03:06:48,240 --> 03:06:50,320 BUT IT'S NOT JUST ABOUT THE 4523 03:06:50,320 --> 03:06:51,360 STUDY THEY ARE IN. 4524 03:06:51,360 --> 03:06:54,680 BUT IT'S ACTUALLY JUST GENERAL 4525 03:06:54,680 --> 03:06:55,200 INFORMATION. 4526 03:06:55,200 --> 03:06:57,880 WE HAVE ALL TALKED ABOUT THAT WE 4527 03:06:57,880 --> 03:06:59,200 GIVE INFORMATION BACK ON DOWN 4528 03:06:59,200 --> 03:07:02,720 SYNDROME TO NEW FAMILIES. 4529 03:07:02,720 --> 03:07:05,160 WE GIVE INFORMATION ON GENOMICS. 4530 03:07:05,160 --> 03:07:07,600 WHAT IS DNA? 4531 03:07:07,600 --> 03:07:10,480 WHY ARE YOU GETTING THIS BLOOD 4532 03:07:10,480 --> 03:07:11,840 SAMPLE FROM ME. 4533 03:07:11,840 --> 03:07:13,520 WHAT TYPE OF RESULTS CAN WE 4534 03:07:13,520 --> 03:07:14,680 EXPECT TO SEE? 4535 03:07:14,680 --> 03:07:18,120 WE GIVE BACK SOME BASIC ANCESTRY 4536 03:07:18,120 --> 03:07:20,120 RESULTS SO WE WANT TO EXPLAIN 4537 03:07:20,120 --> 03:07:21,760 WHAT DOES THAT MEAN? 4538 03:07:21,760 --> 03:07:23,200 WHY IS IT IMPORTANT TO 4539 03:07:23,200 --> 03:07:26,040 UNDERSTAND WHERE YOUR ANCESTORS 4540 03:07:26,040 --> 03:07:26,880 HAVE COME FROM? 4541 03:07:26,880 --> 03:07:29,320 AND HOW WOULD YOU INTERPRET THAT 4542 03:07:29,320 --> 03:07:30,040 REPORT? 4543 03:07:30,040 --> 03:07:32,120 WHAT WOULD IT MEAN FOR YOU? 4544 03:07:32,120 --> 03:07:34,000 THIS GENERAL INFORMATION I THINK 4545 03:07:34,000 --> 03:07:37,440 IS AGAIN VERY IMPORTANT TO JUST 4546 03:07:37,440 --> 03:07:40,200 PROVIDE TO THE PARTICIPANTS AN 4547 03:07:40,200 --> 03:07:42,080 EXTRA LAYER OF HELPING THEM 4548 03:07:42,080 --> 03:07:44,400 UNDERSTAND NOT ONLY ABOUT YOUR 4549 03:07:44,400 --> 03:07:45,960 STUDY BUT WHY RESEARCH IS 4550 03:07:45,960 --> 03:07:52,000 IMPORTANT OVER-ALL. 4551 03:07:52,000 --> 03:07:53,800 SO UNDERSTAND THE TRANSPARENCY 4552 03:07:53,800 --> 03:07:55,640 EARNS TRUST AND AGAIN NOT 4553 03:07:55,640 --> 03:07:57,280 EXPECTING YOU TO BE ABLE TO READ 4554 03:07:57,280 --> 03:07:59,040 THE SMALL PRINT BUT WE TALK 4555 03:07:59,040 --> 03:08:00,760 ABOUT HOW WE'RE GOING TO PROTECT 4556 03:08:00,760 --> 03:08:01,680 THEIR DATA. 4557 03:08:01,680 --> 03:08:03,640 HOW ARE WE GOING TO PROTECT 4558 03:08:03,640 --> 03:08:04,840 THEIR INFORMATION? 4559 03:08:04,840 --> 03:08:07,640 AND IN THIS DAY AND AGE WHERE 4560 03:08:07,640 --> 03:08:09,440 THERE IS SO MUCH HACKING 4561 03:08:09,440 --> 03:08:10,680 INVOLVED AND ESPECIALLY IF 4562 03:08:10,680 --> 03:08:13,520 YOU'RE COLLECTING DNA SAMPLES 4563 03:08:13,520 --> 03:08:14,760 WHAT DOES THAT MEAN? 4564 03:08:14,760 --> 03:08:16,120 WHEN WE SAY IT'S GOING TO BE 4565 03:08:16,120 --> 03:08:17,880 SHARED WITH A DATABASE THAT 4566 03:08:17,880 --> 03:08:20,000 RESEARCHERS WILL HAVE ACCESS TO 4567 03:08:20,000 --> 03:08:22,240 OR IT'S GOING TO BE SHARED WITH 4568 03:08:22,240 --> 03:08:24,360 THE NATIONAL DATABASE WHAT DOES 4569 03:08:24,360 --> 03:08:26,360 THAT MEAN AND WHAT ARE THE RISK 4570 03:08:26,360 --> 03:08:29,560 THAT MIGHT POTENTIALLY BE 4571 03:08:29,560 --> 03:08:30,000 INVOLVED. 4572 03:08:30,000 --> 03:08:32,000 JUST BE UP FRONT AND HONEST 4573 03:08:32,000 --> 03:08:33,800 ABOUT ALL OF THOSE QUESTIONS. 4574 03:08:33,800 --> 03:08:36,920 ALL OF US ALSO RETURNS CERTAIN 4575 03:08:36,920 --> 03:08:38,000 MEDICAL GENETIC INFORMATION. 4576 03:08:38,000 --> 03:08:40,320 SO WE HAVE TO ADDRESS WHAT DOES 4577 03:08:40,320 --> 03:08:40,920 THAT MEAN? 4578 03:08:40,920 --> 03:08:43,960 HOW COULD THAT IMPACT YOUR 4579 03:08:43,960 --> 03:08:45,720 HEALTH INSURANCE, YOUR 4580 03:08:45,720 --> 03:08:46,960 DISABILITY INSURANCE, LIFE 4581 03:08:46,960 --> 03:08:48,160 INSURANCE. 4582 03:08:48,160 --> 03:08:51,920 LONG-TERM CARE INSURANCE. 4583 03:08:51,920 --> 03:08:54,120 ALTHOUGH GENOME DOES A VERY GOOD 4584 03:08:54,120 --> 03:08:56,560 JOB OF PROTECTING PARTICIPANTS 4585 03:08:56,560 --> 03:08:58,520 WITH HEALTH INSURANCE ISSUES IT 4586 03:08:58,520 --> 03:09:02,040 DOES NOT COVER EVERYONE OR OTHER 4587 03:09:02,040 --> 03:09:03,560 TYPES OF INSURANCE. 4588 03:09:03,560 --> 03:09:05,000 SO DEPENDING ON WHAT TYPE OF 4589 03:09:05,000 --> 03:09:08,520 RESULTS THAT YOU MIGHT BE 4590 03:09:08,520 --> 03:09:10,120 RETURNING JUST MAKE SURE THEY 4591 03:09:10,120 --> 03:09:12,520 UNDERSTAND THAT IN ADVANCE AND 4592 03:09:12,520 --> 03:09:15,320 HOW THAT MIGHT AFFECT THEIR CARE 4593 03:09:15,320 --> 03:09:22,000 AS WELL AS THEIR FAMILY'S CARE. 4594 03:09:22,000 --> 03:09:24,440 WE HAVE CUSTOM CAMPAIGNS. 4595 03:09:24,440 --> 03:09:26,720 AND THIS I THINK IS VERY 4596 03:09:26,720 --> 03:09:29,080 IMPORTANT TO BE ABLE TO REACH 4597 03:09:29,080 --> 03:09:30,320 THOSE COMMUNITIES THAT YOU'RE 4598 03:09:30,320 --> 03:09:31,880 PLANNING TO ASK TO BE IN YOUR 4599 03:09:31,880 --> 03:09:33,680 STUDIES. 4600 03:09:33,680 --> 03:09:35,960 THEY NEED TO LOOK LIKE THE 4601 03:09:35,960 --> 03:09:37,400 COMMUNITY THAT YOU'RE GOING 4602 03:09:37,400 --> 03:09:37,920 INTO. 4603 03:09:37,920 --> 03:09:40,480 THEY NEED TO BE SIMPLE. 4604 03:09:40,480 --> 03:09:40,880 STRAIGHT FORWARD. 4605 03:09:40,880 --> 03:09:42,800 THEY NEED TO EXPLAIN WHY THEY 4606 03:09:42,800 --> 03:09:44,440 WANT TO AND NEED TO DO THIS 4607 03:09:44,440 --> 03:09:46,840 RESEARCH. 4608 03:09:46,840 --> 03:09:49,840 IT IS REALLY IMPORTANT FOR YOU 4609 03:09:49,840 --> 03:09:51,520 TO MEET THE COMMUNITY WHERE THEY 4610 03:09:51,520 --> 03:09:54,280 ARE AND TRY TO UNDERSTAND WHAT 4611 03:09:54,280 --> 03:09:58,080 WOULD BE IMPORTANT FOR THEM TO 4612 03:09:58,080 --> 03:10:00,160 ENGAGE WITH THEM TO BE IN YOUR 4613 03:10:00,160 --> 03:10:06,600 RESEARCH. 4614 03:10:06,600 --> 03:10:09,400 SO I THINK THIS IS JUST THE 4615 03:10:09,400 --> 03:10:11,000 SUMMARY THAT AGAIN WE'VE HIT OFF 4616 03:10:11,000 --> 03:10:13,080 MANY OF THESE TOPICS BEFORE OF 4617 03:10:13,080 --> 03:10:15,400 WAYS THAT WE CAN INCREASE 4618 03:10:15,400 --> 03:10:17,480 PARTICIPATION AND DIVERSITY. 4619 03:10:17,480 --> 03:10:20,840 WE TALKED ABOUT HAVING THOSE 4620 03:10:20,840 --> 03:10:22,680 PARTICIPANT ADVISORY BOARDS. 4621 03:10:22,680 --> 03:10:25,880 YOUR RESEARCH PLAN AND SPECIFIC 4622 03:10:25,880 --> 03:10:28,360 AIMS MAY BE SUPER EXCITING TO 4623 03:10:28,360 --> 03:10:31,080 YOU BUT WHEN YOU TALK TO 4624 03:10:31,080 --> 03:10:32,840 PARTICIPANTS THEY MAY BE LIKE 4625 03:10:32,840 --> 03:10:34,640 THAT DOESN'T SEEM LIKE SOMETHING 4626 03:10:34,640 --> 03:10:36,360 I'M INTERESTED IN DOING BUT IF 4627 03:10:36,360 --> 03:10:38,960 YOU SWITCHED IT AROUND AND YOU 4628 03:10:38,960 --> 03:10:40,280 ASK THIS QUESTION. 4629 03:10:40,280 --> 03:10:41,960 NOW THAT WE CAN GET ON-BOARD 4630 03:10:41,960 --> 03:10:42,360 WITH. 4631 03:10:42,360 --> 03:10:43,800 SO, ITS VERY IMPORTANT TO GET 4632 03:10:43,800 --> 03:10:46,360 THE FEEDBACK EARLY ON TO KNOW 4633 03:10:46,360 --> 03:10:48,000 HOW YOU MIGHT NEED TO ADJUST 4634 03:10:48,000 --> 03:10:49,720 SOME OF THE QUESTIONS THAT 4635 03:10:49,720 --> 03:10:51,360 YOU'RE EVEN ASKING. 4636 03:10:51,360 --> 03:10:52,720 IT'S IMPORTANT AGAIN TO HAVE 4637 03:10:52,720 --> 03:10:54,360 THOSE TAILORED RECRUITMENT 4638 03:10:54,360 --> 03:10:55,640 MATERIALS. 4639 03:10:55,640 --> 03:10:57,360 WE'VE TALKED NUMEROUS TIMES 4640 03:10:57,360 --> 03:11:01,760 ABOUT INCREASING INCENTIVES. 4641 03:11:01,760 --> 03:11:03,480 MAKING IT WORTH THE TIME THAT 4642 03:11:03,480 --> 03:11:05,240 YOU'RE ASKING THE PARTICIPANTS 4643 03:11:05,240 --> 03:11:06,360 TO PUT NCATS RETURN OF 4644 03:11:06,360 --> 03:11:07,760 INFORMATION. 4645 03:11:07,760 --> 03:11:09,240 GIVING THEM BACK SOMETHING FOR 4646 03:11:09,240 --> 03:11:13,720 BEING IN THIS STUDY. 4647 03:11:13,720 --> 03:11:14,680 ESTABLISHING THOSE COMMUNITY 4648 03:11:14,680 --> 03:11:16,400 PARTNERSHIPS AND MAKING SURE 4649 03:11:16,400 --> 03:11:18,800 THAT IT IS AN EXTENDED 4650 03:11:18,800 --> 03:11:19,200 PARTNERSHIP. 4651 03:11:19,200 --> 03:11:21,480 YOU CANNOT GO INTO A COMMUNITY 4652 03:11:21,480 --> 03:11:23,400 AND ASK THEM TO BE IN YOUR 4653 03:11:23,400 --> 03:11:25,280 RESEARCH STUDY AND THEN NOT GIVE 4654 03:11:25,280 --> 03:11:26,360 THEM ANYTHING BACK. 4655 03:11:26,360 --> 03:11:29,480 7 AND THEN EXPECT TO GO BACK TO 4656 03:11:29,480 --> 03:11:32,000 THE SAME COMMUNITY SIX MONTHS, A 4657 03:11:32,000 --> 03:11:35,520 YEAR LATER, TWO YEARS LATER 4658 03:11:35,520 --> 03:11:36,680 GUESS WHAT? 4659 03:11:36,680 --> 03:11:38,440 I'VE GOT ANOTHER STUDY. 4660 03:11:38,440 --> 03:11:39,520 LET'S DO IT AGAIN. 4661 03:11:39,520 --> 03:11:42,320 THAT IS NOT GOING TO WORK. 4662 03:11:42,320 --> 03:11:43,680 THESE PARTNERSHIPS, YOU HAVE TO 4663 03:11:43,680 --> 03:11:44,800 BE PART OF THE COMMUNITY AND 4664 03:11:44,800 --> 03:11:46,800 PROVIDING THE OTHER RESOURCE 4665 03:11:46,800 --> 03:11:48,280 THAT'S EXTEND BEYOND YOUR 4666 03:11:48,280 --> 03:11:50,040 RESEARCH. 4667 03:11:50,040 --> 03:11:51,440 AND THEN REAL EVENT. 4668 03:11:51,440 --> 03:11:53,400 JUST MAKING SURE THAT THIS IS 4669 03:11:53,400 --> 03:11:55,400 SOMETHING RELEVANT TO THE 4670 03:11:55,400 --> 03:11:57,720 POPULATIONS THAT YOU'RE ASKING 4671 03:11:57,720 --> 03:11:58,840 TO BE INVOLVED. 4672 03:11:58,840 --> 03:12:01,400 MAKING SURE THAT THEY ARE TEAM 4673 03:12:01,400 --> 03:12:04,120 MEMBERS IN THOSE DECISIONS AND 4674 03:12:04,120 --> 03:12:05,880 GETTING THEIR INPUT. 4675 03:12:05,880 --> 03:12:10,520 AND THEN MY LAST SLIDE -- IS 4676 03:12:10,520 --> 03:12:11,880 JUST MY THANK YOU SLIDE TO 4677 03:12:11,880 --> 03:12:12,320 EVERYONE. 4678 03:12:12,320 --> 03:12:14,120 ALL OF THE PARTICIPANTS AND 4679 03:12:14,120 --> 03:12:15,840 FAMILIES THAT MAKE THIS 4680 03:12:15,840 --> 03:12:16,560 POSSIBLE. 4681 03:12:16,560 --> 03:12:17,840 WITHOUT THEM WE WOULD NOT BE 4682 03:12:17,840 --> 03:12:20,560 ABLE TO DO WHAT WE DO. 4683 03:12:20,560 --> 03:12:26,400 OUR TEAM THAT WAS FORMERLY 4684 03:12:26,400 --> 03:12:28,440 HEADED BY -- WHO'S RETIRED. 4685 03:12:28,440 --> 03:12:32,240 THE GROUPS THAT ARE INVOLVED 4686 03:12:32,240 --> 03:12:33,800 WITH THE PROJECTS AND THEN 4687 03:12:33,800 --> 03:12:35,280 FUNDING. 4688 03:12:35,280 --> 03:12:36,840 SO THANK YOU FOR THIS. 4689 03:12:36,840 --> 03:12:38,840 I THINK WE'RE DOING QUESTIONS AT 4690 03:12:38,840 --> 03:12:40,080 THE END. 4691 03:12:40,080 --> 03:12:42,800 >> YES AND THANK YOU SO MUCH 4692 03:12:42,800 --> 03:12:44,880 DR. ROSSER FOR THAT FANTASTIC 4693 03:12:44,880 --> 03:12:47,320 PRESENTATION AND EMPHASIZING 4694 03:12:47,320 --> 03:12:49,520 AGAIN PATIENT ENGAGEMENT AND 4695 03:12:49,520 --> 03:12:51,360 THAT IT TAKES ALL OF US 4696 03:12:51,360 --> 03:12:53,400 PARTICULARLY WITH A TAILORED 4697 03:12:53,400 --> 03:12:55,560 APPROACH TO ANSWER SOME OF THE 4698 03:12:55,560 --> 03:12:57,200 RESEARCH QUESTIONS AND TO HELP 4699 03:12:57,200 --> 03:12:58,200 WITH CARE. 4700 03:12:58,200 --> 03:13:00,960 SO NEXT WE HAVE DR. KELLY AND 4701 03:13:00,960 --> 03:13:03,680 DR. MILLER AND SO I WANT TO 4702 03:13:03,680 --> 03:13:05,720 GENTLY REMIND YOU TO PLEASE BE 4703 03:13:05,720 --> 03:13:07,720 AWARE OF PACING FOR THE 4704 03:13:07,720 --> 03:13:09,240 INTERPRETATION. 4705 03:13:09,240 --> 03:13:10,840 SO DR. KELLY. 4706 03:13:10,840 --> 03:13:12,400 >> THANK YOU, DR. BROWN. 4707 03:13:12,400 --> 03:13:15,280 FIRST I WANTED TO THANK THE NIH 4708 03:13:15,280 --> 03:13:16,720 INCLUDE PROGRAM FOR HAVING US 4709 03:13:16,720 --> 03:13:19,360 HERE TODAY TO SHARE OUR JOURNEY 4710 03:13:19,360 --> 03:13:20,600 TOWARDS ADDRESSING WHAT WE 4711 03:13:20,600 --> 03:13:24,040 CONSIDER A CRITICAL MYTHOLOGICAL 4712 03:13:24,040 --> 03:13:25,360 GAP. 4713 03:13:25,360 --> 03:13:28,360 AND OUR EFFORTS TO OPTIMIZE THE 4714 03:13:28,360 --> 03:13:30,480 INFORMED CONSENT PROCESS FOR 4715 03:13:30,480 --> 03:13:31,760 PEOPLE WITH DOWN SYNDROME. 4716 03:13:31,760 --> 03:13:34,200 AND THAT THIS PROCESS LEVERAGES 4717 03:13:34,200 --> 03:13:35,880 THE DIVERSE VOICE OF OUR 4718 03:13:35,880 --> 03:13:38,440 COMMUNITIES. 4719 03:13:38,440 --> 03:13:42,160 AND THE GREAT FORTUNE OF 4720 03:13:42,160 --> 03:13:45,280 CO-PRESENTING WITH MY COLLEAGUE 4721 03:13:45,280 --> 03:13:48,680 DR. VICTORIA MILLER WHO HAS 4722 03:13:48,680 --> 03:13:50,280 GRACIOUSLY AGREED TO JOIN OUR 4723 03:13:50,280 --> 03:13:57,440 TEAM IN THIS MISSION. 4724 03:13:57,440 --> 03:13:59,680 SO FIRST, I THINK IT'S WORTH 4725 03:13:59,680 --> 03:14:01,360 MENTIONING THAT YOU'RE PROBABLY 4726 03:14:01,360 --> 03:14:04,560 ALL WONDERING WHY A PEDIATRIC 4727 03:14:04,560 --> 03:14:07,320 DIABETES DOCTOR IS PRESENTING 4728 03:14:07,320 --> 03:14:10,440 DURING A SLEEP FOCUS SECTION AND 4729 03:14:10,440 --> 03:14:13,000 YOU CAN BLAME SUJATA FOR THAT. 4730 03:14:13,000 --> 03:14:15,640 THIS JOURNEY FOR ME BEGAN IN THE 4731 03:14:15,640 --> 03:14:18,080 EARLY 2000s WHEN I WAS 4732 03:14:18,080 --> 03:14:21,480 STUDYING THE INTERSECTION OF 4733 03:14:21,480 --> 03:14:23,440 SLEEP APNEA AND HEART HEALTH IN 4734 03:14:23,440 --> 03:14:24,960 OTHERWISE HEALTHY INDIVIDUALS. 4735 03:14:24,960 --> 03:14:28,600 AND MY MENTOR WAS AN EXPERT IN 4736 03:14:28,600 --> 03:14:30,960 SLEEP DR. CAROL MARCUS AND WAS 4737 03:14:30,960 --> 03:14:33,800 DOING WORK IN DOWN SYNDROME. 4738 03:14:33,800 --> 03:14:35,000 FAST-FORWARD A FEW YEARS AND 4739 03:14:35,000 --> 03:14:38,880 ANOTHER MENTOR OF MINE -- WAS 4740 03:14:38,880 --> 03:14:41,080 DEVELOPING GROWTH CURVES FOR 4741 03:14:41,080 --> 03:14:42,840 CHILDREN WITH DOWN SYNDROME. 4742 03:14:42,840 --> 03:14:45,840 AND SHE KNEW THAT I WAS AT THAT 4743 03:14:45,840 --> 03:14:48,440 TIME PREGNANT WITH A CHILD WITH 4744 03:14:48,440 --> 03:14:50,880 DOWN SYNDROME AND INVITED ME TO 4745 03:14:50,880 --> 03:14:52,720 WORK WITH HER TO DO SOME WORK IN 4746 03:14:52,720 --> 03:14:54,160 DOWN SYNDROME. 4747 03:14:54,160 --> 03:14:57,160 AND AS A RESULT MY RESEARCH 4748 03:14:57,160 --> 03:14:58,600 PIVOTED AND WE WERE INTERESTED 4749 03:14:58,600 --> 03:15:06,800 IN LOOKING AT BO BODY COMPOSITI. 4750 03:15:06,800 --> 03:15:10,160 AND WHILE WE RECOGNIZE THE 4751 03:15:10,160 --> 03:15:13,120 IMPORTANCE OF SLEEP APNEA 4752 03:15:13,120 --> 03:15:16,440 INCLUDING STUDIES OF OBSTRUCTIVE 4753 03:15:16,440 --> 03:15:19,960 SLEEP APNEA WERE COSTLY AND 4754 03:15:19,960 --> 03:15:22,680 BEYOND THE SCOPE OF OUR WORK. 4755 03:15:22,680 --> 03:15:25,040 BUT THE IMPORTANCE OF 4756 03:15:25,040 --> 03:15:26,760 OBSTRUCTIVE SLEEP APNEA WAS 4757 03:15:26,760 --> 03:15:29,600 FURTHER HIGHLIGHTED FOR ME WHEN 4758 03:15:29,600 --> 03:15:34,320 I WANT TO SEE ONE OF MY 4759 03:15:34,320 --> 03:15:36,720 PARTICIPANTS WHO IS ENGAGED IN 4760 03:15:36,720 --> 03:15:38,560 OUR RESEARCH TO DO A PHYSICAL 4761 03:15:38,560 --> 03:15:40,640 EXAM AND SHE WAS SITTING NEXT TO 4762 03:15:40,640 --> 03:15:43,000 HER MOTHER AND SHE WAS SOUND 4763 03:15:43,000 --> 03:15:47,280 ASLEEP SNORING AND I WAS QUITE 4764 03:15:47,280 --> 03:15:48,520 CONCERNED THAT SHE WAS 4765 03:15:48,520 --> 03:15:48,960 OBSTRUCTING. 4766 03:15:48,960 --> 03:15:54,240 WE QUICKLY A -- ARRANGED FOR HER 4767 03:15:54,240 --> 03:15:55,960 TO HAVE A SLEEP STUDY. 4768 03:15:55,960 --> 03:16:00,720 SHE HAD TO HAVE URGENT CARE FOR 4769 03:16:00,720 --> 03:16:04,880 HER OBSTRUCTIVE SLEEP APNEA. 4770 03:16:04,880 --> 03:16:06,400 THIS HIGHLIGHTED THE IMPORTANCE 4771 03:16:06,400 --> 03:16:09,400 OF SCREENING AND MAKING IT MORE 4772 03:16:09,400 --> 03:16:12,960 CONVENIENT FOR OUR FAMILIES. 4773 03:16:12,960 --> 03:16:16,560 FAST-FORWARD AND I AM A CO-PI 4774 03:16:16,560 --> 03:16:23,640 WITH DR. TAPIA ON AN NIH FUNDED 4775 03:16:23,640 --> 03:16:28,040 STUDY OF SLEEP APNEA TESTING. 4776 03:16:28,040 --> 03:16:30,520 OUR OBJECTIVES ARE CAN WE MAKE 4777 03:16:30,520 --> 03:16:32,120 SLEEP TESTING EASIER FOR 4778 03:16:32,120 --> 03:16:34,360 FAMILIES IN THE CLINIC SETTING 4779 03:16:34,360 --> 03:16:35,600 AND IN THE RESEARCH SETTING AND 4780 03:16:35,600 --> 03:16:38,320 WE HAVE WANTED TO LOOK AT THE 4781 03:16:38,320 --> 03:16:39,640 ASK ACCEPTABILITY AND 4782 03:16:39,640 --> 03:16:40,480 FEASIBILITY. 4783 03:16:40,480 --> 03:16:46,280 7 WE ALSO WANTED TO CONFIRM THAT 4784 03:16:46,280 --> 03:16:49,160 THIS WAS -- THAT THE PERFORMANCE 4785 03:16:49,160 --> 03:16:52,920 WAS GOOD SO WE'RE COMPARING 4786 03:16:52,920 --> 03:16:55,040 HOMELY APNEA TESTING TO THE LAB. 4787 03:16:55,040 --> 03:16:58,520 AND AS PART OF THIS STUDY WE 4788 03:16:58,520 --> 03:17:01,040 WERE ENGAGING CAREGIVERS AND 4789 03:17:01,040 --> 03:17:03,280 PEOPLE WITH DOWN SYNDROME 4790 03:17:03,280 --> 03:17:04,280 THROUGH QUESTIONNAIRES AND 4791 03:17:04,280 --> 03:17:06,560 DISCUSSIONS REGARDING THE USE OF 4792 03:17:06,560 --> 03:17:10,520 HOME SLEEP APNEA TESTING AS WELL 4793 03:17:10,520 --> 03:17:13,160 AS IN LAB -- TO DISCUSS FACTORS 4794 03:17:13,160 --> 03:17:15,680 THAT FACILITATED OR IMPAIRED 4795 03:17:15,680 --> 03:17:21,840 ABILITY TO COMPLETE THE STUDIES. 4796 03:17:21,840 --> 03:17:29,000 AND -- A RESEARCHER COORDINATOR 4797 03:17:29,000 --> 03:17:30,800 BEGAN TO CONFER WITH ME 4798 03:17:30,800 --> 03:17:31,560 REGARDING SOME OF THE COMMENTS 4799 03:17:31,560 --> 03:17:33,560 THAT THE FAMILY MEMBERS WERE 4800 03:17:33,560 --> 03:17:35,120 PROVIDING TO HIM THAT WERE 4801 03:17:35,120 --> 03:17:38,480 OUTSIDE OF THE STANDARD 4802 03:17:38,480 --> 03:17:39,920 QUESTIONS THAT WE WERE HOPING TO 4803 03:17:39,920 --> 03:17:41,680 ADDRESS AS PART OF THE STUDY. 4804 03:17:41,680 --> 03:17:45,840 AND WHEN THE FIRST COMMENT WAS A 4805 03:17:45,840 --> 03:17:49,840 PARENT OF A 19-YEAR-OLD SAID THE 4806 03:17:49,840 --> 03:17:54,000 PREVIOUS STUDY WAS A TRAUMATIC 4807 03:17:54,000 --> 03:17:55,840 EXPERIENCE FOR BOTH OF US. 4808 03:17:55,840 --> 03:17:58,200 THIS RESONATED WITH OUR TEAM AND 4809 03:17:58,200 --> 03:18:02,480 HIGHLIGHTED THE IMPORTANCE OF 4810 03:18:02,480 --> 03:18:04,720 HAVING -- RESEARCH TEAM MEMBERS 4811 03:18:04,720 --> 03:18:07,160 WHO WERE SENSITIVE TO THE 4812 03:18:07,160 --> 03:18:08,960 LEARNING DISABILITIES AND 4813 03:18:08,960 --> 03:18:14,040 SENSORY ISSUES FOR OUR CHILDREN. 4814 03:18:14,040 --> 03:18:15,880 AND THEN A SECOND COMMENT WAS 4815 03:18:15,880 --> 03:18:18,440 QUITE ALARMING TO US AND THAT 4816 03:18:18,440 --> 03:18:21,680 WAS THAT MY CHILD'S PRIMARY CARE 4817 03:18:21,680 --> 03:18:23,960 PHYSICIAN TOLD ME IT WAS NOT 4818 03:18:23,960 --> 03:18:25,760 POSSIBLE DUE TO HIS SENSORY 4819 03:18:25,760 --> 03:18:27,920 ISSUES AND HE NEEDS TO DEAL WITH 4820 03:18:27,920 --> 03:18:30,680 THE SLEEP APNEA FOR THE REST OF 4821 03:18:30,680 --> 03:18:31,320 HIS LIFE. 4822 03:18:31,320 --> 03:18:34,280 THIS IS WHAT MOM REPORTED AND WE 4823 03:18:34,280 --> 03:18:37,520 DON'T KNOW WHAT WAS SAID BUT IT 4824 03:18:37,520 --> 03:18:39,840 HIGHLIGHTED US TO THAT WE NEED 4825 03:18:39,840 --> 03:18:45,480 TO RECALIBRATE EXPECTATIONS FOR 4826 03:18:45,480 --> 03:18:47,320 OUR MEDICAL COMMUNITY AND THAT 4827 03:18:47,320 --> 03:18:50,960 WE REALLY NEED TO EDUCATE THE 4828 03:18:50,960 --> 03:18:52,640 MEDICAL COMMUNITY BETTER ABOUT 4829 03:18:52,640 --> 03:18:55,520 SERVING THE NEEDS OF OUR 4830 03:18:55,520 --> 03:18:57,040 CHILDREN AND ADULTS WITH DOWN 4831 03:18:57,040 --> 03:19:05,000 SYNDROME. 4832 03:19:05,000 --> 03:19:08,800 IN PURSUIT OF OUR WORK WE HAVE A 4833 03:19:08,800 --> 03:19:10,080 MULTI-DISCIPLINARY TEAM WITH 4834 03:19:10,080 --> 03:19:12,680 EXPERTISE IN DOWN SYNDROME AND 4835 03:19:12,680 --> 03:19:13,840 PEDIATRIC SLEEP RESEARCH. 4836 03:19:13,840 --> 03:19:17,920 AS YOU KNOW DR. TAPIA HAS A MADE 4837 03:19:17,920 --> 03:19:21,120 A FIRM COMMITMENT TO DIVERSITY. 4838 03:19:21,120 --> 03:19:25,520 CHRIS CELLO IS COMMITTED TO 4839 03:19:25,520 --> 03:19:27,640 ADVANCING THE HOME TESTING IN 4840 03:19:27,640 --> 03:19:29,880 YOUTH AND DR. MELISSA -- HAS 4841 03:19:29,880 --> 03:19:34,160 WORKED WITH ME SINCE 2010 AND 4842 03:19:34,160 --> 03:19:36,960 SHE INTRODUCED US TO SOCIAL 4843 03:19:36,960 --> 03:19:40,680 STORIES OR STORY BOARDS WHICH I 4844 03:19:40,680 --> 03:19:42,480 WILL HIGHLIGHT LATER IN HELPING 4845 03:19:42,480 --> 03:19:45,840 TO ALLAY THE ANXIETY THAT MAY 4846 03:19:45,840 --> 03:19:47,440 OCCUR IN PEOPLE WITH DOWN 4847 03:19:47,440 --> 03:19:49,800 SYNDROME AS THEY ENGAGE IN 4848 03:19:49,800 --> 03:19:51,960 RESEARCH. 4849 03:19:51,960 --> 03:19:58,680 DR. MARY PIPPEN DIRECTS OUR TROY 4850 03:19:58,680 --> 03:20:00,000 ZOOM CLINIC. 4851 03:20:00,000 --> 03:20:02,520 AND MARY IS A HUGE CONTRIBUTOR. 4852 03:20:02,520 --> 03:20:05,600 SHE HAS THE FINGER ON THE PULSE 4853 03:20:05,600 --> 03:20:07,080 OF INDIVIDUALS OF THE DOWN 4854 03:20:07,080 --> 03:20:09,280 SYNDROME COMMUNITY AND ALWAYS 4855 03:20:09,280 --> 03:20:10,840 ASKED THAT CRITICAL QUESTION. 4856 03:20:10,840 --> 03:20:13,000 HOW IS THIS GOING TO ADVANCE THE 4857 03:20:13,000 --> 03:20:15,240 CARE OF OUR PATIENTS WITH DOWN 4858 03:20:15,240 --> 03:20:17,800 SYNDROME? 4859 03:20:17,800 --> 03:20:19,240 OUR SLEEP STAFF AND RESEARCH 4860 03:20:19,240 --> 03:20:21,040 TEAM AND WE HAVE ONGOING 4861 03:20:21,040 --> 03:20:23,600 PARTNERSHIPS WITH PARENT 4862 03:20:23,600 --> 03:20:25,880 ADVOCATES WHO AGAIN ADVISE US IN 4863 03:20:25,880 --> 03:20:27,160 WHAT IS IMPORTANT FOR OUR 4864 03:20:27,160 --> 03:20:29,280 COMMUNITY AND HOW CAN WE ENGAGE 4865 03:20:29,280 --> 03:20:30,120 THEM WELL. 4866 03:20:30,120 --> 03:20:34,040 AND I WANT TO ACKNOWLEDGE THAT I 4867 03:20:34,040 --> 03:20:36,120 THINK AS A PARENT AND RESEARCH 4868 03:20:36,120 --> 03:20:38,800 ERAS A PARENT A CHILD WITH DOWN 4869 03:20:38,800 --> 03:20:44,560 SYNDROME THAT I FORMED SOME 4870 03:20:44,560 --> 03:20:47,800 TRUST WITH BOTH MY CLINIC 4871 03:20:47,800 --> 03:20:49,400 PATIENTS AND IN THE RESEARCH 4872 03:20:49,400 --> 03:20:51,000 ARENA AND THAT HAS HELPED WITH 4873 03:20:51,000 --> 03:20:56,440 OUR PARTNERSHIPS. 4874 03:20:56,440 --> 03:21:00,680 SO ONE OF OUR PRIORITIES -- THIS 4875 03:21:00,680 --> 03:21:03,480 HAS BEEN TO FOCUS ON 4876 03:21:03,480 --> 03:21:05,480 COMMUNICATION DURING THE CONSENT 4877 03:21:05,480 --> 03:21:07,320 AND ASCENT PROCESS. 4878 03:21:07,320 --> 03:21:09,120 AND WE'VE BEEN DOING THAT 4879 03:21:09,120 --> 03:21:10,360 THROUGH THESE SOCIAL STORIES 4880 03:21:10,360 --> 03:21:12,440 WHICH I'LL SHOWCASE ON THE NEXT 4881 03:21:12,440 --> 03:21:12,760 SLIDE. 4882 03:21:12,760 --> 03:21:15,160 8 AS WELL AS THROUGH VIDEOS. 4883 03:21:15,160 --> 03:21:22,360 CAN YOU HIT IT AGAIN PLEASE. 4884 03:21:22,360 --> 03:21:25,160 I THINK THAT WE'RE GOING TO SHOW 4885 03:21:25,160 --> 03:21:31,960 A CLIP OF ONE OF THE -- VIDEOS. 4886 03:21:31,960 --> 03:21:33,160 PERHAPS AFTER THIS. 4887 03:21:33,160 --> 03:21:35,720 SO WITH THE VIDEOS AND SOCIAL 4888 03:21:35,720 --> 03:21:38,080 STORIES IT IS NICE THERE ARE NO 4889 03:21:38,080 --> 03:21:39,120 SURPRISES FROM MY CHILD. 4890 03:21:39,120 --> 03:21:42,680 SOME FEEDBACK FROM A PARENT' A 4891 03:21:42,680 --> 03:21:43,680 19-YEAR-OLD FROM PENNSYLVANIA. 4892 03:21:43,680 --> 03:21:45,960 WE THOUGHT THIS WAS A WIN. 4893 03:21:45,960 --> 03:21:48,240 THREE PEOPLE HOWEVER DECLINED 4894 03:21:48,240 --> 03:21:49,680 PARTICIPATION AFTER WATCHING THE 4895 03:21:49,680 --> 03:21:51,680 VIDEO AS PARENTS DID NOT THINK 4896 03:21:51,680 --> 03:21:53,360 THEIR CHILDREN COULD UNDERGO THE 4897 03:21:53,360 --> 03:21:56,680 SLEEP STUDY AND WHILE WE WERE 4898 03:21:56,680 --> 03:21:58,320 DISAPPOINTED BY THIS LOSS AND WE 4899 03:21:58,320 --> 03:22:01,640 WOULD NOT BE ABLE TO REPORT BACK 4900 03:22:01,640 --> 03:22:03,200 THAT WE ENROLLED THESE 4901 03:22:03,200 --> 03:22:04,760 INDIVIDUALS WE FELT LIKE IT WAS 4902 03:22:04,760 --> 03:22:06,880 A WIN BECAUSE WE FELT LIKE WE 4903 03:22:06,880 --> 03:22:11,360 HAD PROVIDED AN INFORMED STUDY. 4904 03:22:11,360 --> 03:22:16,600 SO HERE IS A CLIP OF THE VIDEO. 4905 03:22:16,600 --> 03:22:17,960 >> YOUR CHILD WILL ARRIVE HOME 4906 03:22:17,960 --> 03:22:19,800 FROM THE LAB WITH THE 4907 03:22:19,800 --> 03:22:21,280 ELECTRODES, DEVICE AND CHEST AND 4908 03:22:21,280 --> 03:22:24,880 BELLY BANDS ALREADY IN PLACE. 4909 03:22:24,880 --> 03:22:27,120 HIS OR HER HEAD WILL BE WRAPPED 4910 03:22:27,120 --> 03:22:28,640 IN GAUZE. 4911 03:22:28,640 --> 03:22:31,960 IF YOUR CHILD COMPLAINS OF IT 4912 03:22:31,960 --> 03:22:33,840 BEING ITCHY ENCOURAGE YOUR CHILD 4913 03:22:33,840 --> 03:22:36,360 TO TAP IT BUT NOT RUB. 4914 03:22:36,360 --> 03:22:38,560 IF YOUR CHILD COMPLAINS OF BEING 4915 03:22:38,560 --> 03:22:40,880 HOT OR OBSERVE YOUR CHILD TRYING 4916 03:22:40,880 --> 03:22:45,320 TO TOUCH THE ELECTRODES WIRES OR 4917 03:22:45,320 --> 03:22:46,920 GUATANAMO DISTRACTION WILL BE 4918 03:22:46,920 --> 03:22:51,720 THE BEST SOLUTION. 4919 03:22:51,720 --> 03:22:55,800 >> THANKS. 4920 03:22:55,800 --> 03:22:58,000 >> AND AS YOU CAN SEE THAT WAS 4921 03:22:58,000 --> 03:23:03,840 REALLY GEARED TOWARDS THE CARE 4922 03:23:03,840 --> 03:23:05,960 GIVER AS PART OF THE EDUCATION 4923 03:23:05,960 --> 03:23:08,960 BUT THAT I THINK WAS USEFUL FOR 4924 03:23:08,960 --> 03:23:12,160 THE FAMILY MEMBER TO HAVE A 4925 03:23:12,160 --> 03:23:14,360 BETTER SENSE OF WOULD THEIR 4926 03:23:14,360 --> 03:23:16,400 CHILD BE ABLE TO PARTICIPATE IN 4927 03:23:16,400 --> 03:23:18,440 THIS RESEARCH STUDY. 4928 03:23:18,440 --> 03:23:20,800 AND THERE IS MICHELLE WHO WORKS 4929 03:23:20,800 --> 03:23:22,800 NICELY WITH OUR POPULATION AND 4930 03:23:22,800 --> 03:23:24,840 OUR VIDEOS FEATURE PEOPLE WITH 4931 03:23:24,840 --> 03:23:26,000 DOWN SYNDROME. 4932 03:23:26,000 --> 03:23:32,800 SO THAT HOPEFULLY OUR COMMUNITY 4933 03:23:32,800 --> 03:23:35,720 FEELS MORE ENGAGED WE HAD 4934 03:23:35,720 --> 03:23:36,840 FEATURING SOMEONE WITH DOWN 4935 03:23:36,840 --> 03:23:41,840 SYNDROME. 4936 03:23:41,840 --> 03:23:44,880 I THINK WE JUST NEED TO KEY BACK 4937 03:23:44,880 --> 03:23:51,840 UP TO MY SLIDES. 4938 03:23:51,840 --> 03:23:54,640 >> YOU I'M SORRY DR. KELLY YOU 4939 03:23:54,640 --> 03:23:56,280 CAN'T SEE THE SCREEN? 4940 03:23:56,280 --> 03:23:58,440 >> I SEE A BLUE SCREEN. 4941 03:23:58,440 --> 03:23:59,000 >> OKAY. 4942 03:23:59,000 --> 03:24:09,200 ONE SECOND. 4943 03:24:19,480 --> 03:24:19,680 >> GREAT. 4944 03:24:19,680 --> 03:24:20,200 THANK YOU. 4945 03:24:20,200 --> 03:24:21,960 DOES MOVE ON TO THE NEXT SLIDE, 4946 03:24:21,960 --> 03:24:25,840 PLEASE. 4947 03:24:25,840 --> 03:24:28,560 SO HERE IS WHAT A SOCIAL STORY 4948 03:24:28,560 --> 03:24:30,200 MIGHT LOOK LIKE. 4949 03:24:30,200 --> 03:24:32,480 WE HAVE INDIVIDUAL PLACARDS 4950 03:24:32,480 --> 03:24:35,560 SHOWCASING VARIOUS COMPONENTS OF 4951 03:24:35,560 --> 03:24:37,200 THE STUDY PROCEDURES. 4952 03:24:37,200 --> 03:24:39,080 AND WE HAVE A STORY THAT GOES 4953 03:24:39,080 --> 03:24:41,760 ALONG WITH IT AND WE PERSONALIZE 4954 03:24:41,760 --> 03:24:46,560 IT BY INCLUDING THE CHILD'S NAME 4955 03:24:46,560 --> 03:24:49,040 AND WE'LL ALSO INCLUDE MICHELE'S 4956 03:24:49,040 --> 03:24:50,840 NAME WHO'S OUR SLEEP TECH HERE 4957 03:24:50,840 --> 03:24:53,440 AS WELL AS OUR RESEARCH 4958 03:24:53,440 --> 03:24:55,280 COORDINATOR'S NAME TO MAKE THE 4959 03:24:55,280 --> 03:24:59,400 PROCESS AS SEAMLESS AS POSSIBLE. 4960 03:24:59,400 --> 03:25:02,720 WHAT A TESH WILL DO IS LINE UP 4961 03:25:02,720 --> 03:25:05,560 THE CARDS AND IF POSSIBLE AND IF 4962 03:25:05,560 --> 03:25:08,440 IT'S POSSIBLE FOR THE STUDY FOR 4963 03:25:08,440 --> 03:25:12,360 THE CHILD TO LINE UP THE CARDS 4964 03:25:12,360 --> 03:25:15,160 SO THAT WE HAVE SOME OF SENSE OF 4965 03:25:15,160 --> 03:25:16,960 DO THEY UNDERSTAND WHAT THE 4966 03:25:16,960 --> 03:25:18,640 PURPOSE OF THE STUDY IS AND HOW 4967 03:25:18,640 --> 03:25:22,040 THE PROCEDURES ARE GOING TO 4968 03:25:22,040 --> 03:25:23,080 PROCEED. 4969 03:25:23,080 --> 03:25:25,160 AND THEN ALSO ASK QUESTIONS 4970 03:25:25,160 --> 03:25:28,880 ABOUT THE VARIOUS PLACARDS THAT 4971 03:25:28,880 --> 03:25:35,440 ARE INCLUDED IN THE STUDY. 4972 03:25:35,440 --> 03:25:38,320 I JUST WANT TO BRIEFLY REVIEW 4973 03:25:38,320 --> 03:25:39,880 THE SUPPLEMENT WHICH IS LOOKING 4974 03:25:39,880 --> 03:25:42,320 AT THE RELATIONSHIP OF 4975 03:25:42,320 --> 03:25:44,600 OBSTRUCTIVE SLEEP APNEA TO 4976 03:25:44,600 --> 03:25:46,640 POTENTIAL OUTCOMES AND THE POINT 4977 03:25:46,640 --> 03:25:50,840 HERE -- IS THAT WE WANT TO 4978 03:25:50,840 --> 03:25:53,720 ENGAGE AN OLDER POPULATION BUT 4979 03:25:53,720 --> 03:25:55,720 BECAUSE I WORK AT A CHILDREN'S 4980 03:25:55,720 --> 03:25:58,920 HOSPITAL WE DIDN'T HAVE ACCESS 4981 03:25:58,920 --> 03:26:02,680 TO SOMEONE WHO HAD EXPERTISE IN 4982 03:26:02,680 --> 03:26:05,240 ADULT NEURO COGNITIVE TESTING AT 4983 03:26:05,240 --> 03:26:06,680 THE CHILDREN'S HOSPITAL IN 4984 03:26:06,680 --> 03:26:08,720 PHILADELPHIA AND OUR PARTNERS 4985 03:26:08,720 --> 03:26:10,680 DIDN'T FEEL COMFORTABLE 4986 03:26:10,680 --> 03:26:14,000 ADMINISTERING TO ADULTS SO WE 4987 03:26:14,000 --> 03:26:17,400 SOUGHT OUT HELP. 4988 03:26:17,400 --> 03:26:20,080 SHE HAS BEEN WORKING TO TRAIN MY 4989 03:26:20,080 --> 03:26:22,920 RESEARCH COORDINATOR TO PERFORM 4990 03:26:22,920 --> 03:26:26,400 NEURO COGNITIVE TESTING IN 4991 03:26:26,400 --> 03:26:28,240 EMERGING ADULTS AND YOUNG ADULTS 4992 03:26:28,240 --> 03:26:31,600 WITH DOWN SYNDROME. 4993 03:26:31,600 --> 03:26:34,880 SO HERE ARE RECRUITMENT 4994 03:26:34,880 --> 03:26:36,040 DEMOGRAPHICS THUS FAR AND I 4995 03:26:36,040 --> 03:26:37,880 THINK THEY ARE REFLECTIVE OF THE 4996 03:26:37,880 --> 03:26:42,160 GENERAL RECRUITMENT EFFORTS. 4997 03:26:42,160 --> 03:26:46,960 WE HAD INITIALLY PLANNED TO 4998 03:26:46,960 --> 03:26:51,120 RECRUIT 35 INDIVIDUALS FOR 30 4999 03:26:51,120 --> 03:26:52,560 COMPLETERS BUT ENTHUSIASM AMONG 5000 03:26:52,560 --> 03:26:54,240 THE DOWN SYNDROME COMMUNITY WAS 5001 03:26:54,240 --> 03:26:56,720 SO GREAT THAT WE NOT ONLY 5002 03:26:56,720 --> 03:26:59,120 EXPANDED THE SAMPLE SIZE BUT 5003 03:26:59,120 --> 03:27:01,520 ALSO EXPANDED THE AGE ONCE WE 5004 03:27:01,520 --> 03:27:04,400 HAD CONFIDENCE THAT WE COULD USE 5005 03:27:04,400 --> 03:27:06,840 AT HOME SLEEP APNEA TESTING IN 5006 03:27:06,840 --> 03:27:08,240 OUR OLDER INDIVIDUALS. 5007 03:27:08,240 --> 03:27:11,320 RACE IS REFLECTIVE I THINK OF 5008 03:27:11,320 --> 03:27:13,560 WHAT OTHERS DEMONSTRATED EARLIER 5009 03:27:13,560 --> 03:27:15,680 AND AS IS ETHNICITY. 5010 03:27:15,680 --> 03:27:19,280 THESE WERE RECRUITED THROUGH 5011 03:27:19,280 --> 03:27:20,640 NONDOWN SYNDROME CONNECT 5012 03:27:20,640 --> 03:27:26,000 RESOURCES THAT WE TYPICALLY USE. 5013 03:27:26,000 --> 03:27:28,280 AND IN CONDUCTING THIS STUDY WE 5014 03:27:28,280 --> 03:27:32,440 BEGAN TO WORK WITH DR. BARTON TO 5015 03:27:32,440 --> 03:27:34,760 USE DOWN SYNDROME CONNECT. 5016 03:27:34,760 --> 03:27:37,280 AND HE SAID THAT WE WOULD FOCUS 5017 03:27:37,280 --> 03:27:39,040 ON THE PHILADELPHIA AREA. 5018 03:27:39,040 --> 03:27:42,600 THE TRI-STATE AREA BUT LOW AND 5019 03:27:42,600 --> 03:27:44,800 BE HOLD AS DEMONSTRATED BY THIS 5020 03:27:44,800 --> 03:27:46,720 MAP OF THE U.S. WE HAD PEOPLE 5021 03:27:46,720 --> 03:27:49,040 REACH OUT TO US FROM ACROSS THE 5022 03:27:49,040 --> 03:27:49,920 COUNTRY. 5023 03:27:49,920 --> 03:27:54,760 THIS INDIVIDUAL FROM SAN JUAN, 5024 03:27:54,760 --> 03:27:58,040 PUERTO RICO HAS AGREED TO JOIN 5025 03:27:58,040 --> 03:28:01,600 OUR STUDY AND WILL BE FLYING UP 5026 03:28:01,600 --> 03:28:04,520 IN I THINK LATE OCTOBER. 5027 03:28:04,520 --> 03:28:06,440 WE DID HAVE SOMEONE REACH OUT 5028 03:28:06,440 --> 03:28:10,360 FROM DUBLIN TO PARTICIPATE. 5029 03:28:10,360 --> 03:28:13,120 UNFORTUNATELY OUR RESOURCES 5030 03:28:13,120 --> 03:28:17,600 LIMITED THAT ACCOMMODATION. 5031 03:28:17,600 --> 03:28:19,600 REASONS PEOPLE HAVE DECLINED 5032 03:28:19,600 --> 03:28:21,160 PARTICIPATION HAVE INFORMED THE 5033 03:28:21,160 --> 03:28:22,240 NEXT STEPS. 5034 03:28:22,240 --> 03:28:25,400 WE'VE HEARD THIS BEFORE. 5035 03:28:25,400 --> 03:28:28,760 WE HAVE HAD SIX INDIVIDUALS WITH 5036 03:28:28,760 --> 03:28:31,760 LIMITED ENGLISH PROFICIENCY AND 5037 03:28:31,760 --> 03:28:33,960 WHILE WE HAVE AN INTERPRETER WE 5038 03:28:33,960 --> 03:28:37,640 DID NOT HAVE AN INTERPRETER WHO 5039 03:28:37,640 --> 03:28:40,160 COULD PERFORM NEURO COGNITIVE 5040 03:28:40,160 --> 03:28:42,840 TESTING IN SPANISH AND MANY OF 5041 03:28:42,840 --> 03:28:44,440 THE QUESTIONNAIRES THAT ARE 5042 03:28:44,440 --> 03:28:45,920 AVAILABLE IN ENGLISH ARE NOT 5043 03:28:45,920 --> 03:28:47,160 AVAILABLE IN SPANISH. 5044 03:28:47,160 --> 03:28:49,920 8 THOSE THAT HAVE REACHED OUT TO 5045 03:28:49,920 --> 03:28:54,360 US ARE PROHIBITIVE -- COST AND 5046 03:28:54,360 --> 03:28:59,560 TRAVEL -- A SINGLE MOTHER WHO 5047 03:28:59,560 --> 03:29:01,880 CARES FOR HER MOTHER WHO HAS 5048 03:29:01,880 --> 03:29:04,040 ALZHEIMER'S DISEASE AS WELL. 5049 03:29:04,040 --> 03:29:05,960 INCLUSION WAS GOING TO BE 5050 03:29:05,960 --> 03:29:08,000 PROHIBITIVE FOR HER. 5051 03:29:08,000 --> 03:29:10,080 AND THEN I'M GOING TO HIGHLIGHT 5052 03:29:10,080 --> 03:29:12,120 ONE OTHER COMMENT WHICH HAS 5053 03:29:12,120 --> 03:29:14,320 REALLY DRIVEN THE NEXT STEPS IN 5054 03:29:14,320 --> 03:29:15,240 OUR WORK. 5055 03:29:15,240 --> 03:29:17,560 AND THAT IS TO OPTIMIZE THE 5056 03:29:17,560 --> 03:29:19,400 CONSENT AND ASCENT PROCESS. 5057 03:29:19,400 --> 03:29:23,360 THIS WAS -- A PARENT OF AN 5058 03:29:23,360 --> 03:29:25,080 18-YEAR-OLD LIVING IN TEXAS SAID 5059 03:29:25,080 --> 03:29:27,400 NO ONE HAS EVER SPOKEN DIRECTLY 5060 03:29:27,400 --> 03:29:29,520 TO MY CHILD BEFORE. 5061 03:29:29,520 --> 03:29:35,160 EITHER IN THE CLINIC SETTING OR 5062 03:29:35,160 --> 03:29:36,160 RESEARCH SETTING. 5063 03:29:36,160 --> 03:29:37,440 THIS IS DISTURBING. 5064 03:29:37,440 --> 03:29:39,800 HOW CAN WE BETTER FORM A 5065 03:29:39,800 --> 03:29:42,120 STANDARD FOR ENGAGING 5066 03:29:42,120 --> 03:29:43,240 INDIVIDUALS WITH DOWN SYNDROME 5067 03:29:43,240 --> 03:29:44,600 AND THEIR FAMILIES IN OUR 5068 03:29:44,600 --> 03:29:45,360 RESEARCH. 5069 03:29:45,360 --> 03:29:48,240 AND THAT HAS BROUGHT ME TO 5070 03:29:48,240 --> 03:29:50,240 VICTORIA MILLER WHO'S NOW GOING 5071 03:29:50,240 --> 03:29:51,480 TO PRESENT. 5072 03:29:51,480 --> 03:29:54,560 >> THANK YOU, ANDY. 5073 03:29:54,560 --> 03:29:56,320 WE ALL AT LEAST IN THIS GROUP 5074 03:29:56,320 --> 03:29:58,680 CAN AGREE THAT CHILDREN AND 5075 03:29:58,680 --> 03:29:59,640 ADOLESCENTS AND INDIVIDUALS WITH 5076 03:29:59,640 --> 03:30:01,040 DOWN SYNDROME SHOULD HAVE A 5077 03:30:01,040 --> 03:30:03,280 VOICE IN DECISION MAKING ABOUT 5078 03:30:03,280 --> 03:30:04,960 RESEARCH PARTICIPATION AND 5079 03:30:04,960 --> 03:30:06,520 CLINICAL CARE BUT I WOULD LIKE 5080 03:30:06,520 --> 03:30:08,840 TO DIG IN A LITTLE BIT MORE TO 5081 03:30:08,840 --> 03:30:17,840 WHAT THAT MIGHT LOOK LIKE. 5082 03:30:17,840 --> 03:30:19,440 SO ASCENT REFERS TO THE 5083 03:30:19,440 --> 03:30:21,360 AGREEMENT TO PARTICIPATE AND 5084 03:30:21,360 --> 03:30:23,280 IT'S BASED ON THE MORALE 5085 03:30:23,280 --> 03:30:25,640 OBLIGATION TO NURTURE CHILDREN'S 5086 03:30:25,640 --> 03:30:28,400 MORALE GROWTH AND THEIR 5087 03:30:28,400 --> 03:30:30,240 DEVELOPING AUTONOMY. 5088 03:30:30,240 --> 03:30:34,520 KEY WORK FOCUS ON AUTONOMY. 5089 03:30:34,520 --> 03:30:38,760 IT IS NOT EQUIVALENT TO 5090 03:30:38,760 --> 03:30:39,960 AUTONOMOUS DECISION MAKING. 5091 03:30:39,960 --> 03:30:50,400 7 INSTEAD I THINK THE ASCENT 5092 03:30:51,400 --> 03:30:53,200 PROCESS PROVIDES THE OPPORTUNITY 5093 03:30:53,200 --> 03:30:55,920 FOR AN INDIVIDUAL A CHILD TO 5094 03:30:55,920 --> 03:30:58,040 CHOOSE OR BE INVOLVED TO THE 5095 03:30:58,040 --> 03:31:00,480 EXTENT THAT THAT CHILD IS ABLE. 5096 03:31:00,480 --> 03:31:03,000 AND WE CAN THINK ABOUT THE 5097 03:31:03,000 --> 03:31:07,160 ASCENT PROCESS CHANGING BASED ON 5098 03:31:07,160 --> 03:31:10,400 * DEVELOPMENT AND THE CHILD'S 5099 03:31:10,400 --> 03:31:11,640 CHARACTERISTICS AND ACROSS 5100 03:31:11,640 --> 03:31:15,160 DEVELOPMENT AS THE CHILD'S 5101 03:31:15,160 --> 03:31:19,600 CAPACITIES MATURE. 5102 03:31:19,600 --> 03:31:23,000 SO ASSENT IS REQUIRED FOR 5103 03:31:23,000 --> 03:31:25,040 RESEARCH PARTICIPATION BUT IT 5104 03:31:25,040 --> 03:31:27,200 CAN BE WAVED IF THERE IS THE 5105 03:31:27,200 --> 03:31:28,840 POSSIBILITY OF DIRECT BENEFIT 5106 03:31:28,840 --> 03:31:31,200 THAT IS ONLY AVAILABLE IN THE 5107 03:31:31,200 --> 03:31:33,520 RESEARCH CONTEXT OR IF THE CHILD 5108 03:31:33,520 --> 03:31:38,120 IS JUDGED IN CAPABLE OF ASSENT. 5109 03:31:38,120 --> 03:31:40,960 LOCAL IRBs ARE LEFT TO 5110 03:31:40,960 --> 03:31:43,960 DETERMINE WHEN AND HOW TO OBTAIN 5111 03:31:43,960 --> 03:31:46,440 AND ASSENT. 5112 03:31:46,440 --> 03:31:48,360 THERE IS A LOT OF VARIABILITY 5113 03:31:48,360 --> 03:31:49,840 OUT THERE AND WHAT IT LOOKS 5114 03:31:49,840 --> 03:31:53,480 LIKE. 5115 03:31:53,480 --> 03:31:54,920 THE NATIONAL COMMISSION FOR THE 5116 03:31:54,920 --> 03:31:58,040 PROTECTION OF HUMAN SUBJECTS DID 5117 03:31:58,040 --> 03:31:59,680 RECOMMEND THESE FOUR ELEMENTS. 5118 03:31:59,680 --> 03:32:01,640 THEY WERE RECOMMENDED NOT 5119 03:32:01,640 --> 03:32:02,440 REQUIRED. 5120 03:32:02,440 --> 03:32:05,960 ONE IS THE KNOWLEDGE THAT 5121 03:32:05,960 --> 03:32:08,520 PROCEDURES WILL BE PERFORMED. 5122 03:32:08,520 --> 03:32:11,160 TWO IS THE CHOICE TO FREELY 5123 03:32:11,160 --> 03:32:14,680 UNDER GO THOSE PROCEDURES. 5124 03:32:14,680 --> 03:32:17,840 THREE IS AN UNAMBIGUOUS 5125 03:32:17,840 --> 03:32:19,560 COMMUNICATION OF THE CHOICE AND 5126 03:32:19,560 --> 03:32:22,640 FOUR IS THE AWARENESS OF THE 5127 03:32:22,640 --> 03:32:24,680 OPTION TO WITHDRAW FROM THE 5128 03:32:24,680 --> 03:32:28,680 RESEARCH ONCE ENROLLED. 5129 03:32:28,680 --> 03:32:31,920 SO I THINK PARTIALLY BASED ON 5130 03:32:31,920 --> 03:32:33,640 THOSE ELEMENTS A LOT OF THE 5131 03:32:33,640 --> 03:32:36,760 RESEARCH IN THIS AREA OF CHILD 5132 03:32:36,760 --> 03:32:38,560 ASSENT IN THE CONTEXT OF 5133 03:32:38,560 --> 03:32:40,320 RESEARCH HAS FOCUSED ON 5134 03:32:40,320 --> 03:32:42,440 KNOWLEDGE OR WHAT I THINK OF AS 5135 03:32:42,440 --> 03:32:44,120 A COGNITIVE MODEL. 5136 03:32:44,120 --> 03:32:47,120 SO THIS PAST RESEARCH HAS 5137 03:32:47,120 --> 03:32:49,680 FOCUSED ON HOW MUCH CHILDREN 5138 03:32:49,680 --> 03:32:51,200 UNDERSTAND ABOUT THE DIFFERENT 5139 03:32:51,200 --> 03:32:52,760 LIMITS OF RESEARCH. 5140 03:32:52,760 --> 03:32:56,640 OTHER ASPECTS OF THEIR 5141 03:32:56,640 --> 03:32:58,760 CONFIDENCE OR DECISION MAKING 5142 03:32:58,760 --> 03:33:01,520 SKILL AND STUDIES THAT COMPARE 5143 03:33:01,520 --> 03:33:05,680 YOUTH CAPABILITIES TO THAT OF 5144 03:33:05,680 --> 03:33:09,080 ADULTS. 5145 03:33:09,080 --> 03:33:12,080 WHEN ARE CHILDREN COMPETENT TO 5146 03:33:12,080 --> 03:33:14,680 ASSENT? 5147 03:33:14,680 --> 03:33:17,080 THERE HAS BEEN LESS ATTENTION TO 5148 03:33:17,080 --> 03:33:19,320 WHAT I THINK OF AS THE 5149 03:33:19,320 --> 03:33:22,520 RELATIONAL ASPECTS OF ASSENT AND 5150 03:33:22,520 --> 03:33:24,280 DECISION MAKING IN GENERAL. 5151 03:33:24,280 --> 03:33:27,160 HOW DO PARENTS AND CHILDREN AND 5152 03:33:27,160 --> 03:33:28,960 RESEARCHERS INTERACT AND 5153 03:33:28,960 --> 03:33:31,200 COMMUNICATE ABOUT RESEARCH? 5154 03:33:31,200 --> 03:33:32,840 AND THINKING ABOUT THE 5155 03:33:32,840 --> 03:33:33,840 IMPORTANCE OF VOICE OF THE 5156 03:33:33,840 --> 03:33:35,000 CHILD. 5157 03:33:35,000 --> 03:33:37,520 I THINK THAT CHILDREN CAN BE 5158 03:33:37,520 --> 03:33:40,840 INVOLVED IN THE DECISION WITHOUT 5159 03:33:40,840 --> 03:33:41,920 NECESSARILY HAVING THE FINAL 5160 03:33:41,920 --> 03:33:43,240 SAY. 5161 03:33:43,240 --> 03:33:45,320 AND SO TO ME THE IMPORTANT 5162 03:33:45,320 --> 03:33:48,040 QUESTION IS HOW CAN WE INVOLVE 5163 03:33:48,040 --> 03:33:49,680 CHILDREN IN DECISIONS ABOUT 5164 03:33:49,680 --> 03:33:52,320 RESEARCH PARTICIPATION. 5165 03:33:52,320 --> 03:33:53,880 AND THEIR CLINICAL CARE IN 5166 03:33:53,880 --> 03:33:55,000 GENERAL IN WAYS THAT BENEFIT 5167 03:33:55,000 --> 03:34:01,160 THEM. 5168 03:34:01,160 --> 03:34:03,000 SO I LIKE TO THINK ABOUT THE 5169 03:34:03,000 --> 03:34:04,920 CONSENT OF DECISION MAKING 5170 03:34:04,920 --> 03:34:07,280 INVOLVEMENT AS BEING AN 5171 03:34:07,280 --> 03:34:09,120 APPROPRIATE CONSENT WHEN WE 5172 03:34:09,120 --> 03:34:12,560 THINK ABOUT ASSENT TO RESEARCH 5173 03:34:12,560 --> 03:34:14,200 PARTICIPATION. 5174 03:34:14,200 --> 03:34:16,640 THE GENERAL DEFINITIONS THE WAY 5175 03:34:16,640 --> 03:34:20,280 IN WHICH ADULTS AND CHILDREN OR 5176 03:34:20,280 --> 03:34:21,960 ADOLESCENTS ENGAGE IN EACH OTHER 5177 03:34:21,960 --> 03:34:23,880 IN DECISION MAKING AND PROBLEM 5178 03:34:23,880 --> 03:34:24,280 SOLVING. 5179 03:34:24,280 --> 03:34:30,120 SO YOU CAN SEE THIS DEFINITION 5180 03:34:30,120 --> 03:34:32,360 FOCUSES ON THE PROCESS AND NOT 5181 03:34:32,360 --> 03:34:34,120 NECESSARILY WHO HAS THE FINAL 5182 03:34:34,120 --> 03:34:35,840 SAY OR WHO MAKES THE DECISION. 5183 03:34:35,840 --> 03:34:40,000 THE CONSENT ALSO EMPHASIZES 5184 03:34:40,000 --> 03:34:43,680 PARENT AND CHILD AND PROVIDER 5185 03:34:43,680 --> 03:34:45,240 RESEARCH BEHAVIORS THAT ARE 5186 03:34:45,240 --> 03:34:48,320 HAPPENING AROUND DECISION 5187 03:34:48,320 --> 03:34:48,800 MAKING. 5188 03:34:48,800 --> 03:34:50,880 THE PARENT OR RESEARCHER CAN 5189 03:34:50,880 --> 03:34:53,800 TALK DIRECTLY TO YOUTH. 5190 03:34:53,800 --> 03:34:56,160 THEY CAN ASK THE YOUTH WHAT 5191 03:34:56,160 --> 03:34:58,000 QUESTIONS OR CONCERNS THEY HAVE. 5192 03:34:58,000 --> 03:34:59,360 ABOUT THE RESEARCH. 5193 03:34:59,360 --> 03:35:00,600 OR THE PROCEDURES. 5194 03:35:00,600 --> 03:35:03,520 77 THEY CAN CHECK THAT THE CHILD 5195 03:35:03,520 --> 03:35:05,240 * UNDERSTANDS WHAT WILL HAPPEN 5196 03:35:05,240 --> 03:35:07,040 IN THE RESEARCH STUDY. 5197 03:35:07,040 --> 03:35:09,680 AND ALSO THE CHILD CAN CERTAINLY 5198 03:35:09,680 --> 03:35:13,360 SPEAK UP BY SHARING AN OPINION, 5199 03:35:13,360 --> 03:35:15,360 ASKING QUESTIONS, SHARING 5200 03:35:15,360 --> 03:35:17,400 CONCERNS ABOUT THE RESEARCH. 5201 03:35:17,400 --> 03:35:19,800 AND SO FORTH. 5202 03:35:19,800 --> 03:35:27,600 7 SO THE CONSENT RECOGNIZES THAT 5203 03:35:27,600 --> 03:35:29,440 7 CHILDREN CAN BE MEANINGFULLY 5204 03:35:29,440 --> 03:35:31,920 INVOLVED IN DECISION MAKING IN 5205 03:35:31,920 --> 03:35:33,480 MULTIPLE WAYS REGARDLESS OF WHAT 5206 03:35:33,480 --> 03:35:35,760 WE DEFINE AS CAPACITY. 5207 03:35:35,760 --> 03:35:38,800 IT ALSO RECOGNIZES THAT PARENTS 5208 03:35:38,800 --> 03:35:43,160 AND PROVIDERS TYPICALLY RETAIN A 5209 03:35:43,160 --> 03:35:46,880 CRITICAL ROLE OF SOURCES OF 5210 03:35:46,880 --> 03:35:50,680 ADVICE FOR DECISION MAKING. 5211 03:35:50,680 --> 03:35:52,040 MULTIPLE STUDIES HAVE SHOWN THAT 5212 03:35:52,040 --> 03:35:54,720 MANY OR MOST CHILDREN AND 5213 03:35:54,720 --> 03:35:56,840 ADOLESCENTS WANT INPUT ABOUT 5214 03:35:56,840 --> 03:35:58,400 HEALTH RELATED DECISIONS FROM 5215 03:35:58,400 --> 03:36:00,480 THEIR PARENTS INCLUDING RESEARCH 5216 03:36:00,480 --> 03:36:01,160 DECISIONS. 5217 03:36:01,160 --> 03:36:04,160 YOUTH HAVE ALSO SAID THAT BEING 5218 03:36:04,160 --> 03:36:05,520 GIVEN A CHOICE WITHOUT THE 5219 03:36:05,520 --> 03:36:07,320 NECESSARY SUPPORT AND GUIDANCE 5220 03:36:07,320 --> 03:36:09,360 THAT THEY NEED CAN BE 5221 03:36:09,360 --> 03:36:14,240 BURDENSOME. 5222 03:36:14,240 --> 03:36:16,640 AND I JUST WANT TO TAKE A MOMENT 5223 03:36:16,640 --> 03:36:19,080 TO DIFFERENTIATE THE CONSENT OF 5224 03:36:19,080 --> 03:36:20,640 DECISION MAKING INVOLVEMENT FROM 5225 03:36:20,640 --> 03:36:22,040 SHARED DECISION MAKING. 5226 03:36:22,040 --> 03:36:24,560 I DO SEE THEM AS QUITE 5227 03:36:24,560 --> 03:36:25,800 DIFFERENT. 5228 03:36:25,800 --> 03:36:27,320 SDM DEVELOPED WITH RESPECT TO 5229 03:36:27,320 --> 03:36:30,080 THE ADULT PATIENT AND PROVIDER 5230 03:36:30,080 --> 03:36:31,760 RELATIONSHIP. 5231 03:36:31,760 --> 03:36:35,280 AND IT REQUIRES MUTUALITY 5232 03:36:35,280 --> 03:36:36,680 BETWEEN THE INDIVIDUALS. 5233 03:36:36,680 --> 03:36:37,920 SHARED INFORMATION GIVING AND 5234 03:36:37,920 --> 03:36:39,720 DECISION MAKING AND AGREEMENT 5235 03:36:39,720 --> 03:36:41,400 ABOUT THE DECISION. 5236 03:36:41,400 --> 03:36:44,520 AND THIS IS NOT NECESSARILY 5237 03:36:44,520 --> 03:36:46,840 APPLICABLE TO CHILD AND PROVIDER 5238 03:36:46,840 --> 03:36:47,440 RELATIONSHIPS. 5239 03:36:47,440 --> 03:36:50,720 OF COURSE, PARENTS PLAY A 5240 03:36:50,720 --> 03:36:52,240 SIGNIFICANT ROLE BOTH LEGALLY 5241 03:36:52,240 --> 03:36:54,960 AND PRACTICALLY IN DECISION 5242 03:36:54,960 --> 03:36:56,440 MAKING AND CHILDREN ARE STILL IN 5243 03:36:56,440 --> 03:36:58,600 THE MIDST OF DEVELOPING THEIR 5244 03:36:58,600 --> 03:37:00,600 DECISION MAKING AND 5245 03:37:00,600 --> 03:37:01,920 COMMUNICATION CAPABILITIES. 5246 03:37:01,920 --> 03:37:04,600 THEY ARE NOT EQUAL PARTNERS IN 5247 03:37:04,600 --> 03:37:06,880 DECISION MAKING SO I THINK 5248 03:37:06,880 --> 03:37:09,000 DECISION MAKING INVOLVEMENT IS 5249 03:37:09,000 --> 03:37:10,360 THE MORE APPROPRIATE CONSENT TO 5250 03:37:10,360 --> 03:37:14,120 BE THINKING B. -- ABOUT. 5251 03:37:14,120 --> 03:37:18,320 *. 5252 03:37:18,320 --> 03:37:21,560 SO DECISION MAKING -- RECOGNIZES 5253 03:37:21,560 --> 03:37:22,760 THAT CHILDREN STILL NEED TO 5254 03:37:22,760 --> 03:37:24,840 LEARN AND PRACTICE DECISION 5255 03:37:24,840 --> 03:37:26,840 MAKING IN MULTIPLE SETTINGS. 5256 03:37:26,840 --> 03:37:29,560 THERE ARE MULTIPLE POTENTIAL 5257 03:37:29,560 --> 03:37:32,920 BENEFITS OF INVOLVING YOUTH. 5258 03:37:32,920 --> 03:37:34,800 THESE INCLUDE THAT IT GIVES THEM 5259 03:37:34,800 --> 03:37:36,160 THE OPPORTUNITY TO OBSERVE AND 5260 03:37:36,160 --> 03:37:38,000 PRACTICE DECISION MAKING. 5261 03:37:38,000 --> 03:37:41,440 IT MAY ENHANCE THEIR OWN 5262 03:37:41,440 --> 03:37:42,560 SELF-EFFICACY RELATED TO 5263 03:37:42,560 --> 03:37:44,040 DECISION MAKING SPECIFICALLY OR 5264 03:37:44,040 --> 03:37:46,120 THEIR HEALTH CARE IN GENERAL. 5265 03:37:46,120 --> 03:37:48,320 IT MAY FACILITATE A POSITIVE 5266 03:37:48,320 --> 03:37:50,200 VIEW OF THE DECISION MAKING 5267 03:37:50,200 --> 03:37:52,640 PROCESS AND ALSO OF RESEARCH 5268 03:37:52,640 --> 03:37:53,960 PARTICIPATION MORE GENERALLY. 5269 03:37:53,960 --> 03:37:57,160 AND IT MAY ALSO FACILITATE TRUST 5270 03:37:57,160 --> 03:38:00,240 AND OPEN COMMUNICATION BETWEEN 5271 03:38:00,240 --> 03:38:02,800 YOUTH AND RESEARCHERS AND THE 5272 03:38:02,800 --> 03:38:03,480 MEDICAL TEAM. 5273 03:38:03,480 --> 03:38:05,960 AND IN FACT IN A PRIOR RESEARCH 5274 03:38:05,960 --> 03:38:09,760 STUDY THAT I DID WHEN YOUTH 5275 03:38:09,760 --> 03:38:11,080 PERCEIVED THAT RESEARCHERS 5276 03:38:11,080 --> 03:38:12,680 INVOLVED THEM MORE IN THE 5277 03:38:12,680 --> 03:38:13,880 DISCUSSION ABOUT RESEARCH 5278 03:38:13,880 --> 03:38:17,640 PARTICIPATION. 5279 03:38:17,640 --> 03:38:20,280 CHILDREN PERCEIVED MORE 5280 03:38:20,280 --> 03:38:21,200 FAIRNESS. 5281 03:38:21,200 --> 03:38:23,440 MORE SATISFACTION WITH THE 5282 03:38:23,440 --> 03:38:24,120 PROCESS. 5283 03:38:24,120 --> 03:38:25,680 THEY PERCEIVED THEY HAD A 5284 03:38:25,680 --> 03:38:27,560 GREATER VOICE IN DECISION MAKING 5285 03:38:27,560 --> 03:38:30,640 AS WELL AS REPORTING HIGHER 5286 03:38:30,640 --> 03:38:32,880 LEVELS OF HEALTH RELATED 5287 03:38:32,880 --> 03:38:37,240 DECISIONS SELF-EFFICACY. 5288 03:38:37,240 --> 03:38:39,640 AND I THINK ON THE FLIP SIDE WE 5289 03:38:39,640 --> 03:38:41,440 SHOULD CONTINUE TO RECOGNIZE THE 5290 03:38:41,440 --> 03:38:46,320 POTENTIAL BENEFITS OF CONTINUED 5291 03:38:46,320 --> 03:38:48,000 PARENTAL INVOLVEMENT IN DECISION 5292 03:38:48,000 --> 03:38:48,960 MAKING. 5293 03:38:48,960 --> 03:38:51,080 PARENTS UNDERSTAND THE BROADER 5294 03:38:51,080 --> 03:38:54,120 CONTEXT AND THE CHILD OR 5295 03:38:54,120 --> 03:38:56,800 ADOLESCENT'S VALUES AND GOALS. 5296 03:38:56,800 --> 03:38:59,880 PARENTS CAN PROVIDE INFORMATION 5297 03:38:59,880 --> 03:39:03,760 AND SUPPORT AND FACILITATING AND 5298 03:39:03,760 --> 03:39:08,680 IMPLEMENTATION OF THE DECISION. 5299 03:39:08,680 --> 03:39:11,040 AND IN TERMS OF DISPARITIES NOT 5300 03:39:11,040 --> 03:39:13,440 A LOT OF WORK HAS BEEN DONE IN 5301 03:39:13,440 --> 03:39:16,800 THIS AREA IN TERMS OF YOUTH AND 5302 03:39:16,800 --> 03:39:18,320 DECISION MAKING INVOLVEMENT. 5303 03:39:18,320 --> 03:39:21,280 BUT CERTAINLY WE KNOW AS HAS 5304 03:39:21,280 --> 03:39:23,520 BEEN REFERENCED BEFORE THAT FROM 5305 03:39:23,520 --> 03:39:26,200 RACIAL AND ETHNIC MINORITY 5306 03:39:26,200 --> 03:39:29,000 GROUPS EXPERIENCE DISPARITIES IN 5307 03:39:29,000 --> 03:39:30,200 INTERACTIONS WITH HEALTH CARE 5308 03:39:30,200 --> 03:39:31,920 PROVIDERS AND THIS LIKELY 5309 03:39:31,920 --> 03:39:34,200 INCLUDES THE RESEARCH CONTEXT AS 5310 03:39:34,200 --> 03:39:35,480 WELL. 5311 03:39:35,480 --> 03:39:36,640 THEY ARE UNDER REPRESENTED IN 5312 03:39:36,640 --> 03:39:38,640 RESEARCH. 5313 03:39:38,640 --> 03:39:43,120 I THINK THE ASSENT AND CONSENT 5314 03:39:43,120 --> 03:39:45,560 PROCESS MAY BE DIFFICULT FOR 5315 03:39:45,560 --> 03:39:47,440 INDIVIDUALS FROM ABLE ETHNIC 5316 03:39:47,440 --> 03:39:49,240 MINORITY GROUPS FOR A NUMBER OF 5317 03:39:49,240 --> 03:39:50,360 REASONS. 5318 03:39:50,360 --> 03:39:52,280 ONE, NEGATIVE PAST EXPERIENCES 5319 03:39:52,280 --> 03:39:54,920 WITH THE HEALTH CARE SYSTEM. 5320 03:39:54,920 --> 03:39:57,680 CERTAINLY RACISM, THE BIAS OF 5321 03:39:57,680 --> 03:39:58,840 PROVIDERS AND THE HEALTH CARE 5322 03:39:58,840 --> 03:39:59,840 SYSTEM. 5323 03:39:59,840 --> 03:40:03,440 A HISTORY OF RESEARCH MISCONDUCT 5324 03:40:03,440 --> 03:40:05,240 IN MARGINALIZED COMMUNITIES 5325 03:40:05,240 --> 03:40:07,720 ETC., ETC. 5326 03:40:07,720 --> 03:40:10,200 THE LIST COULD MOVE ON. 5327 03:40:10,200 --> 03:40:13,640 THE CONSTRUCT OF DECISION MAKING 5328 03:40:13,640 --> 03:40:15,640 INVOLVEMENT MAY HELP IN SOME 5329 03:40:15,640 --> 03:40:17,200 RESPECT WITH SOME OF THESE 5330 03:40:17,200 --> 03:40:22,280 CHALLENGES. 5331 03:40:22,280 --> 03:40:24,720 SO JUST WHAT ARE SOME OF THE 5332 03:40:24,720 --> 03:40:26,320 IMPLICATIONS OF WHAT I'VE TALKED 5333 03:40:26,320 --> 03:40:29,400 ABOUT IN TERMS OF DECISION 5334 03:40:29,400 --> 03:40:30,600 MAKING INVOLVEMENT. 5335 03:40:30,600 --> 03:40:33,240 ONE, I THINK WE NEED TO RESPECT 5336 03:40:33,240 --> 03:40:34,720 PARENT'S ROLE IN GUIDING 5337 03:40:34,720 --> 03:40:36,400 DEVELOPMENT AND SUPPORTING YOUTH 5338 03:40:36,400 --> 03:40:38,000 IN DECISION MAKING. 5339 03:40:38,000 --> 03:40:40,040 I THINK WE CAN THINK ABOUT 5340 03:40:40,040 --> 03:40:41,800 INVOLVING YOUTH IN MULTIPLE WAYS 5341 03:40:41,800 --> 03:40:43,480 IN DECISION MAKING ABOUT 5342 03:40:43,480 --> 03:40:45,920 RESEARCH PARTICIPATION SUCH AS 5343 03:40:45,920 --> 03:40:47,400 PROVIDING DEVELOPMENTALLY 5344 03:40:47,400 --> 03:40:48,760 APPROPRIATE AND TAILORED 5345 03:40:48,760 --> 03:40:50,200 INFORMATION. 5346 03:40:50,200 --> 03:40:52,040 SOLICITING THEIR OPINIONS, 5347 03:40:52,040 --> 03:40:53,080 CONCERNS AND QUESTIONS. 5348 03:40:53,080 --> 03:40:54,880 AND CHECKING THAT THEY 5349 03:40:54,880 --> 03:40:56,600 UNDERSTAND WHAT IS GOING TO 5350 03:40:56,600 --> 03:41:00,600 HAPPEN. 5351 03:41:00,600 --> 03:41:02,920 I THINK WE SHOULD ALSO 5352 03:41:02,920 --> 03:41:06,240 APPRECIATE THE WAYS IN WHICH THE 5353 03:41:06,240 --> 03:41:09,040 ASSENT PROCESS CAN SUPPORT YOUTH 5354 03:41:09,040 --> 03:41:11,120 DEVELOPMENT AND FOCUS ON THAT AS 5355 03:41:11,120 --> 03:41:13,480 THE GOAL AS OPPOSED TO GETTING 5356 03:41:13,480 --> 03:41:15,480 THE SIGNATURE AND CHECKING OFF A 5357 03:41:15,480 --> 03:41:16,160 BOX. 5358 03:41:16,160 --> 03:41:18,680 THIS PROCESS SHOWS RESPECT FOR 5359 03:41:18,680 --> 03:41:20,600 THEM AS DEVELOPING PERSONS. 5360 03:41:20,600 --> 03:41:23,200 IT MAY ENHANCE THEIR 5361 03:41:23,200 --> 03:41:27,760 SELF-EFFICACY AND REDUCE THEIR 5362 03:41:27,760 --> 03:41:29,160 STRESS ABOUT RESEARCH. 5363 03:41:29,160 --> 03:41:32,000 I THINK WE CAN ALSO RECOGNIZE 5364 03:41:32,000 --> 03:41:33,760 THE UNIQUE BARRIERS FOR YOUTH 5365 03:41:33,760 --> 03:41:36,640 AND FAMILIES FROM RACIAL AND 5366 03:41:36,640 --> 03:41:39,480 ETHNIC MINORITY GROUPS. 5367 03:41:39,480 --> 03:41:42,160 FOCUSING ON THE RELATIONAL 5368 03:41:42,160 --> 03:41:46,360 ASPECTS OF DECISION MAKING AND 5369 03:41:46,360 --> 03:41:49,200 ASSENT MAY INCREASE TRUST, 5370 03:41:49,200 --> 03:41:51,360 ENHANCE INTERACTIONS AND 5371 03:41:51,360 --> 03:41:52,800 INCREASE DIVERSE REPRESENTATION 5372 03:41:52,800 --> 03:41:54,640 IN RESEARCH. 5373 03:41:54,640 --> 03:41:56,760 BUT THERE HAS NOT BEEN A LOT OF 5374 03:41:56,760 --> 03:42:05,520 WORK LOOKING AT THAT. 5375 03:42:05,520 --> 03:42:09,680 AND FINALLY, WHAT ARE THE 5376 03:42:09,680 --> 03:42:13,800 IMPLICATIONS FOR RESEARCH IN 5377 03:42:13,800 --> 03:42:23,000 INDIVIDUALS WITH DOWN SYNDROME. 5378 03:42:23,000 --> 03:42:24,840 I DO THINK DECISION MAKING 5379 03:42:24,840 --> 03:42:27,000 INVOLVEMENT IS A REALLY HELPFUL 5380 03:42:27,000 --> 03:42:28,600 AND APPROPRIATE CONSTRUCT IN 5381 03:42:28,600 --> 03:42:31,000 THIS GROUP. 5382 03:42:31,000 --> 03:42:33,280 BECAUSE CARE GIVER INVOLVEMENT 5383 03:42:33,280 --> 03:42:35,120 MAY ALWAYS BE RELEVANT AND THERE 5384 03:42:35,120 --> 03:42:38,480 MAY BE THE NEED FOR ADDITIONAL 5385 03:42:38,480 --> 03:42:40,640 ADVOCACY OR INVOLVEMENT OF A 5386 03:42:40,640 --> 03:42:42,120 LEGALLY AUTHORIZED 5387 03:42:42,120 --> 03:42:43,560 REPRESENTATIVE LATER IN 5388 03:42:43,560 --> 03:42:44,040 ADULTHOOD. 5389 03:42:44,040 --> 03:42:47,080 SO WE REALLY DO NEED MORE 5390 03:42:47,080 --> 03:42:51,960 RESEARCH TO OPTIMIZE THE ASSENT 5391 03:42:51,960 --> 03:42:53,960 AND DECISION MAKING PROCESS AND 5392 03:42:53,960 --> 03:42:56,640 TO ENSURE INCLUSIVITY AND EQUITY 5393 03:42:56,640 --> 03:42:57,400 IN RESEARCH. 5394 03:42:57,400 --> 03:42:59,400 SO I THINK THIS IS WHERE I TURN 5395 03:42:59,400 --> 03:43:01,800 IT BACK TO ANDY TO TALK MORE 5396 03:43:01,800 --> 03:43:03,760 ABOUT HOW WE'RE HOPING TO DO 5397 03:43:03,760 --> 03:43:04,200 THIS. 5398 03:43:04,200 --> 03:43:04,520 ASCEND. 5399 03:43:08,360 --> 03:43:18,440 ASCENT. 5400 03:43:20,920 --> 03:43:22,640 -- WE SPECIFICALLY UNFORTUNATELY 5401 03:43:22,640 --> 03:43:28,880 HAVE NOT SOLICITED THE COMMUNITY 5402 03:43:28,880 --> 03:43:31,920 INPUT IN ORDER TO OPTIMIZE THESE 5403 03:43:31,920 --> 03:43:32,880 VIDEOS. 5404 03:43:32,880 --> 03:43:35,000 THESE STORY BOARDS AND CERTAINLY 5405 03:43:35,000 --> 03:43:38,840 HAVE NOT OFFICIALLY OBTAINED 5406 03:43:38,840 --> 03:43:41,360 INFORMATION REGARDING THIS 5407 03:43:41,360 --> 03:43:43,520 DECISION MAKING INVOLVED. 5408 03:43:43,520 --> 03:43:47,720 SO AS PART OF OUR ATTEMPTS TO 5409 03:43:47,720 --> 03:43:49,640 SORT OF IMPROVE THIS PROCESS 5410 03:43:49,640 --> 03:43:51,680 WE'RE NOW ENGAGING IN SOME 5411 03:43:51,680 --> 03:43:53,840 APPEAR ADDITIONAL WORK. 5412 03:43:53,840 --> 03:43:55,640 SO WE HAVE WE'RE BEGINNING TO 5413 03:43:55,640 --> 03:43:58,600 GATHER A FAMILY ADVISORY BOARD 5414 03:43:58,600 --> 03:44:01,800 WHO WILL GET SOME OFFICIAL 5415 03:44:01,800 --> 03:44:03,480 TRAINING LAY TRAINING IN WHAT IT 5416 03:44:03,480 --> 03:44:05,240 MEANS TO PURSUE CLINICAL 5417 03:44:05,240 --> 03:44:06,120 RESEARCH. 5418 03:44:06,120 --> 03:44:09,120 AND THEN WE WILL WITH VICTORIA'S 5419 03:44:09,120 --> 03:44:10,880 HELP SOLICIT PATIENT AND CARE 5420 03:44:10,880 --> 03:44:13,800 GIVE ERIN PUT USING INTERVIEWS 5421 03:44:13,800 --> 03:44:16,200 AND ONE OF THE FIRST CONCEPTS IS 5422 03:44:16,200 --> 03:44:17,720 BARRIERS TO RESEARCH. 5423 03:44:17,720 --> 03:44:19,880 WE'VE HEARD ABOUT THAT A FAIR 5424 03:44:19,880 --> 03:44:22,040 AMOUNT TODAY. 5425 03:44:22,040 --> 03:44:24,040 WE WILL ASK ABOUT EXPERIENCE 5426 03:44:24,040 --> 03:44:26,320 WITH CONSENT AND ASSENT EITHER 5427 03:44:26,320 --> 03:44:33,320 IN THE CLINICAL SETTI SET -- SEG 5428 03:44:33,320 --> 03:44:34,760 OR THE RESEARCH SETTING. 5429 03:44:34,760 --> 03:44:37,520 AND THE UTILITY OF USING A 5430 03:44:37,520 --> 03:44:40,200 DIGITAL PLATFORM FOR ASSESSING 5431 03:44:40,200 --> 03:44:42,600 AND UNDERSTANDING OF STUDY 5432 03:44:42,600 --> 03:44:44,120 PROCEDURES AND PURPOSE AND RISK 5433 03:44:44,120 --> 03:44:47,120 AND BENEFITS GETTING TO THE 5434 03:44:47,120 --> 03:44:49,000 COGNITIVE ASPECT OF THE ASSENT 5435 03:44:49,000 --> 03:44:49,760 PROCESS. 5436 03:44:49,760 --> 03:44:52,480 WE HAVE SOME GLOBAL DECISION 5437 03:44:52,480 --> 03:44:53,760 MAKING INVOLVEMENT TOOLS FOR 5438 03:44:53,760 --> 03:44:56,520 WHICH WE WOULD SEEK FEEDBACK SO 5439 03:44:56,520 --> 03:44:58,320 THAT WE ASK QUESTIONS 5440 03:44:58,320 --> 03:45:01,720 APPROPRIATELY OF OUR INDIVIDUALS 5441 03:45:01,720 --> 03:45:03,480 WITH DOWN SYNDROME. 5442 03:45:03,480 --> 03:45:07,120 AND CAPITALIZE ON THEIR LEARNING 5443 03:45:07,120 --> 03:45:09,240 STRENGTHS AND THIS IS ALL IN AN 5444 03:45:09,240 --> 03:45:11,880 EFFORT TO GET FEEDBACK ON THE 5445 03:45:11,880 --> 03:45:15,520 UTILITY OF THESE IN PROMOTING 5446 03:45:15,520 --> 03:45:17,200 SELF-EFFICACY AMONG OUR DOWN 5447 03:45:17,200 --> 03:45:21,680 SYNDROME COMMUNITY. 5448 03:45:21,680 --> 03:45:24,040 SO HOW ARE WE GOING TO DO THIS 5449 03:45:24,040 --> 03:45:26,920 AND ADDRESS DIVERSITY? 5450 03:45:26,920 --> 03:45:29,480 WE'LL RECRUIT BOTH LOCALLY AND 5451 03:45:29,480 --> 03:45:29,880 NATIONALLY. 5452 03:45:29,880 --> 03:45:32,720 WE HAVE A PLAN TO TARGET 5453 03:45:32,720 --> 03:45:35,360 SPECIFIC GEOGRAPHIC REGIONS SO 5454 03:45:35,360 --> 03:45:36,280 THAT WE ARE INCLUDING 5455 03:45:36,280 --> 03:45:38,560 INDIVIDUALS FROM THE SOUTH FROM 5456 03:45:38,560 --> 03:45:42,240 THE WEST, MIDWEST AS WELL AS THE 5457 03:45:42,240 --> 03:45:43,720 NORTHEAST -- HERE IN 5458 03:45:43,720 --> 03:45:44,480 PHILADELPHIA. 5459 03:45:44,480 --> 03:45:46,680 WE'LL RECRUIT FROM RURAL AND 5460 03:45:46,680 --> 03:45:49,880 URBAN POPULATIONS. 5461 03:45:49,880 --> 03:45:52,400 WE WILL SET LOWER LIMITS FOR 5462 03:45:52,400 --> 03:45:55,000 INDIVIDUALS OF VARIOUS RACES AND 5463 03:45:55,000 --> 03:45:55,520 ETHNICITIES. 5464 03:45:55,520 --> 03:45:58,880 WE WILL LARGELY FOCUS ON SPANISH 5465 03:45:58,880 --> 03:46:01,880 FOR OUR LIMITED ENGLISH LANGUAGE 5466 03:46:01,880 --> 03:46:04,080 PROFICIENCY BECAUSE AS I'VE 5467 03:46:04,080 --> 03:46:05,880 SHOWN YOU EARLIER THE VAST 5468 03:46:05,880 --> 03:46:09,280 NUMBER OF PEOPLE WHO COULD NOT 5469 03:46:09,280 --> 03:46:11,520 PARTICIPATE IN OUR STUDIES SPOKE 5470 03:46:11,520 --> 03:46:12,920 SPANISH. 5471 03:46:12,920 --> 03:46:16,160 WE'LL INCLUDE THE DS CONNECT IN 5472 03:46:16,160 --> 03:46:18,560 ORDER TO OPTIMIZE THIS 5473 03:46:18,560 --> 03:46:20,520 RECRUITMENT STRATEGY. 5474 03:46:20,520 --> 03:46:22,520 AND IF WE ARE UNSUCCESSFUL THAT 5475 03:46:22,520 --> 03:46:25,720 WAY WE'LL WORK WITH AN ON-LINE 5476 03:46:25,720 --> 03:46:29,160 MARKETING RECRUITMENT GROUP TO 5477 03:46:29,160 --> 03:46:31,040 RECRUIT ADOLESCENTS AND YOUNG 5478 03:46:31,040 --> 03:46:35,960 ADULTS OF SOUTH ASIAN ANCESTRY. 5479 03:46:35,960 --> 03:46:38,400 PLANNING TO PERFORM OUR SEMI 5480 03:46:38,400 --> 03:46:40,280 STRUCTURED INTERVIEWS IN PERSON 5481 03:46:40,280 --> 03:46:43,120 AND THROUGH VIRTUAL PLATFORMS SO 5482 03:46:43,120 --> 03:46:46,280 WE CAN INCLUDE INDIVIDUALS FROM 5483 03:46:46,280 --> 03:46:48,360 ACROSS THE COUNTRY. 5484 03:46:48,360 --> 03:46:49,680 THOSE INDIVIDUALS THAT LIVE IN 5485 03:46:49,680 --> 03:46:51,720 THE PHILADELPHIA AREA WE'LL 5486 03:46:51,720 --> 03:46:53,520 CONSIDER IN HOME ASSESSMENT. 5487 03:46:53,520 --> 03:46:57,320 BECAUSE FOR A NUMBER OF OUR 5488 03:46:57,320 --> 03:46:59,360 INDIVIDUALS WITH DOWN SYNDROME 5489 03:46:59,360 --> 03:47:01,600 THAT THE CLINIC ENVIRONMENT CAN 5490 03:47:01,600 --> 03:47:03,440 BE QUITE STRESSFUL AND WE MAY 5491 03:47:03,440 --> 03:47:05,000 NOT GET THE BEST FEEDBACK. 5492 03:47:05,000 --> 03:47:07,680 I WANT TO FOLLOW-UP ON THIS 5493 03:47:07,680 --> 03:47:10,960 TRAVEL AND LODGING AND 5494 03:47:10,960 --> 03:47:12,520 REIMBURSEMENT AND COMPENSATION. 5495 03:47:12,520 --> 03:47:18,000 FOR MANY INDIVIDUALS OF LOWER 5496 03:47:18,000 --> 03:47:19,680 SOCIOECONOMIC STATUS PUTTING OUT 5497 03:47:19,680 --> 03:47:22,360 THAT MONEY AHEAD OF TIME FOR GAS 5498 03:47:22,360 --> 03:47:26,640 OR THE TRAIN OR LODGING IS QUITE 5499 03:47:26,640 --> 03:47:30,440 PROHIBITIVE. 5500 03:47:30,440 --> 03:47:35,320 SO WE PREFER PREREIMBURSEMENT 5501 03:47:35,320 --> 03:47:38,720 AND FOR BABY-SITTING AND WAGES. 5502 03:47:38,720 --> 03:47:41,080 I THINK SOMETHING THAT HAS NOT 5503 03:47:41,080 --> 03:47:43,800 BEEN ADDRESSED OR THE TAX 5504 03:47:43,800 --> 03:47:45,240 IMPLICATIONS OF COMPENSATION. 5505 03:47:45,240 --> 03:47:50,000 7 AND WHAT I LEARNED TODAY IS 5506 03:47:50,000 --> 03:47:55,600 THAT WHEN THIS HAPPENED IS IF 5507 03:47:55,600 --> 03:47:58,360 SOMEONE IS COMPENSATED MORE THAN 5508 03:47:58,360 --> 03:48:00,880 $600 THAT IS A TAX LIABILITY AND 5509 03:48:00,880 --> 03:48:05,120 THE IRS WILL TAX ON THAT AND 5510 03:48:05,120 --> 03:48:08,120 THAT IS BASED UPON AN IRS 5511 03:48:08,120 --> 03:48:10,400 DECISION FROM 1990. 5512 03:48:10,400 --> 03:48:13,680 30 YEARS LATER THE CAP IS STILL 5513 03:48:13,680 --> 03:48:15,200 $600. 5514 03:48:15,200 --> 03:48:16,680 AND WE CAN ALL APPRECIATE OVER 5515 03:48:16,680 --> 03:48:19,120 THE PAST TWO YEARS INFLATION. 5516 03:48:19,120 --> 03:48:22,200 AND SO I THINK WE REALLY NEED TO 5517 03:48:22,200 --> 03:48:25,760 HAVE THE NIH WORKING WITH YOUS 5518 03:48:25,760 --> 03:48:28,200 UPDATE THIS CAP. 5519 03:48:28,200 --> 03:48:30,760 IN ADDITION IF INDIVIDUALS ARE 5520 03:48:30,760 --> 03:48:33,200 COMPENSATED MORE THAN $1200 THEY 5521 03:48:33,200 --> 03:48:35,600 ARE AT RISK FOR LOSING SOCIAL 5522 03:48:35,600 --> 03:48:36,040 SECURITY. 5523 03:48:36,040 --> 03:48:38,680 AND WE HAD ONE FAMILY WHO HAD 5524 03:48:38,680 --> 03:48:40,920 TWO SIBLINGS WITH DOWN SYNDROME 5525 03:48:40,920 --> 03:48:43,120 WHO HAD DECLINED PARTICIPATION 5526 03:48:43,120 --> 03:48:45,800 BECAUSE THEY WOULD BE ABOVE THIS 5527 03:48:45,800 --> 03:48:47,080 CAP. 5528 03:48:47,080 --> 03:48:48,880 IN ADDITION WE'VE HAD A NUMBER 5529 03:48:48,880 --> 03:48:50,320 OF INDIVIDUALS WHO HAVE NOT 5530 03:48:50,320 --> 03:48:53,200 WANTED TO GIVE THEIR SOCIAL 5531 03:48:53,200 --> 03:48:55,720 SECURITY NUMBERS BECAUSE THAT 5532 03:48:55,720 --> 03:48:58,960 WOULD LINK THEM TO THE IRS. 5533 03:48:58,960 --> 03:49:01,960 WE HAVE NOT INQUIRED AS TO WHY 5534 03:49:01,960 --> 03:49:09,320 BUT THAT HAS BEEN AN ISSUE 5535 03:49:09,320 --> 03:49:11,880 AND THEN ANOTHER WAY THAT WE'RE 5536 03:49:11,880 --> 03:49:13,800 ATTEMPTING TO ADDRESS DIVERSITY 5537 03:49:13,800 --> 03:49:17,440 IS THAT WE'RE -- WE ARE 5538 03:49:17,440 --> 03:49:19,440 CONVERTING -- WE ARE TRANSLATING 5539 03:49:19,440 --> 03:49:21,000 ALL OF OUR MATERIALS INTO 5540 03:49:21,000 --> 03:49:23,440 SPANISH. 5541 03:49:23,440 --> 03:49:27,280 WE WILL INCLUDE THE VOICE OF 5542 03:49:27,280 --> 03:49:29,920 INDIVIDUALS WITH LIMITED ENGLISH 5543 03:49:29,920 --> 03:49:32,160 PROFICIENCY SO THEY CAN GIVE US 5544 03:49:32,160 --> 03:49:34,160 FEEDBACK ON THE VIDEOS AS WELL 5545 03:49:34,160 --> 03:49:36,080 AS THE QUESTIONNAIRES IN SPANISH 5546 03:49:36,080 --> 03:49:38,720 THAT WE'RE BEING CULTURALLY 5547 03:49:38,720 --> 03:49:41,160 SENSITIVE AND INCLUDING VERBIAGE 5548 03:49:41,160 --> 03:49:42,400 THAT IS APPROPRIATE FOR WHAT 5549 03:49:42,400 --> 03:49:44,680 WE'RE TRYING TO COMMUNICATE. 5550 03:49:44,680 --> 03:49:47,000 WE ALWAYS HAVE A SPANISH 5551 03:49:47,000 --> 03:49:50,520 INTERPRETER BUT I WANT TO 5552 03:49:50,520 --> 03:49:52,520 ACKNOWLEDGE AGAIN MY RESEARCH 5553 03:49:52,520 --> 03:49:54,760 COORDINATOR WHO'S OBTAINING HIS 5554 03:49:54,760 --> 03:49:57,720 CERTIFICATE IN SPANISH 5555 03:49:57,720 --> 03:49:59,960 INTERPRETATION THROUGH THE 5556 03:49:59,960 --> 03:50:00,720 CHILDREN'S HOSPITAL OF 5557 03:50:00,720 --> 03:50:03,560 PHILADELPHIA. 5558 03:50:03,560 --> 03:50:06,240 AND THEN WE ALSO WANT TO MAKE 5559 03:50:06,240 --> 03:50:13,760 THIS WORK MORE GENERALIZABLE. 5560 03:50:13,760 --> 03:50:16,440 ALLOW THEM TO BE EASILY UPDATED 5561 03:50:16,440 --> 03:50:18,200 FOR USE IN ANOTHER STUDY. 5562 03:50:18,200 --> 03:50:20,840 WE WOULD LIKE FOR THIS TO BE THE 5563 03:50:20,840 --> 03:50:23,520 STANDARD FOR THE CONSENT AND 5564 03:50:23,520 --> 03:50:25,200 ASSENT PROCESS FOR RESEARCH 5565 03:50:25,200 --> 03:50:26,840 STUDIES ACROSS THE COUNTRY. 5566 03:50:26,840 --> 03:50:34,400 7 SO I WANT TO HIGHLIGHT -- I 5567 03:50:34,400 --> 03:50:38,320 DON'T WANT TO REPEAT BUT 5568 03:50:38,320 --> 03:50:42,000 CERTAINLY OFFSETTING THE 5569 03:50:42,000 --> 03:50:45,080 ECONOMIC -- BURDEN. 5570 03:50:45,080 --> 03:50:48,000 AND EDUCATING ABOUT TAX 5571 03:50:48,000 --> 03:50:48,400 LIABILITY. 5572 03:50:48,400 --> 03:50:49,960 BETTER TRAINING IN THE CONSENT 5573 03:50:49,960 --> 03:50:51,840 AND ASSENT PROCESS THAT IS 5574 03:50:51,840 --> 03:50:55,400 SENSITIVE TO THE DEVELOPMENTAL 5575 03:50:55,400 --> 03:50:58,520 NEEDS OF OUR COMMUNITY MEMBERS. 5576 03:50:58,520 --> 03:51:00,680 AND HAVE SOME BEST PRACTICES. 5577 03:51:00,680 --> 03:51:03,560 7 I WOULD LOVE TO SEE THAT 5578 03:51:03,560 --> 03:51:06,000 STANDARD QUESTIONNAIRES ARE 5579 03:51:06,000 --> 03:51:07,760 CENTRALLY -- THERE IS A 5580 03:51:07,760 --> 03:51:11,400 MECHANISM FOR TRANSLATION AND A 5581 03:51:11,400 --> 03:51:13,320 REPOSITORY FOR RESEARCHERS TO 5582 03:51:13,320 --> 03:51:13,960 ACCESS. 5583 03:51:13,960 --> 03:51:15,640 BECAUSE WE FEEL LIKE WE'RE 5584 03:51:15,640 --> 03:51:17,320 REPEATING THIS PROCESS OVER AND 5585 03:51:17,320 --> 03:51:19,040 OVER AGAIN. 5586 03:51:19,040 --> 03:51:20,520 I ALSO WANT US TO CONSIDER COST 5587 03:51:20,520 --> 03:51:23,000 TO THE STUDY TEAM THAT MAY NOT 5588 03:51:23,000 --> 03:51:25,680 HAVE BEEN APPARENT AS WE 5589 03:51:25,680 --> 03:51:30,440 PREPARED THE BUDGET AND WE'RE 5590 03:51:30,440 --> 03:51:33,480 BEING ASKED TO DO MORE AND MORE. 5591 03:51:33,480 --> 03:51:37,120 IN HOME VISITS, WITH GAS PRICES 5592 03:51:37,120 --> 03:51:39,240 CAN BE QUITE EXPENSIVE AND WHAT 5593 03:51:39,240 --> 03:51:41,480 YOU CANNOT SEE ON THE BOTTOM OF 5594 03:51:41,480 --> 03:51:45,000 THIS SLIDE IS THAT AS PART OF 5595 03:51:45,000 --> 03:51:48,880 THE TESTING STUDY IN ORDER TO 5596 03:51:48,880 --> 03:51:51,440 MINIMIZE THE BURDEN TO OUR STUDY 5597 03:51:51,440 --> 03:51:54,200 PARTICIPANTS IN HAVING TO RETURN 5598 03:51:54,200 --> 03:51:56,880 THAT DEVICE WE HAD PLANNED TO 5599 03:51:56,880 --> 03:51:59,040 USE A SHIPPING COMPANY BUT 5600 03:51:59,040 --> 03:52:01,560 BECAUSE THE DEVICE IS $20,000 IT 5601 03:52:01,560 --> 03:52:06,720 WAS GOING TO COST US $120 IN 5602 03:52:06,720 --> 03:52:07,160 SERVICE. 5603 03:52:07,160 --> 03:52:10,800 SO WE'VE BEEN USING A CARRIER 5604 03:52:10,800 --> 03:52:14,040 SERVICE TO PICK IT UP AND BRING 5605 03:52:14,040 --> 03:52:16,280 IT BACK AND THESE ARE OFTEN 5606 03:52:16,280 --> 03:52:18,960 COSTS THAT WE DON'T CONSIDER AS 5607 03:52:18,960 --> 03:52:21,240 WE'RE HOPING TO ENGAGE A DIVERSE 5608 03:52:21,240 --> 03:52:23,560 POPULATION AND GETTING TO NOT 5609 03:52:23,560 --> 03:52:26,000 JUST THE PHILADELPHIA AREA BUT 5610 03:52:26,000 --> 03:52:28,760 TO MORE RURAL ENVIRONMENTS. 5611 03:52:28,760 --> 03:52:32,600 SO I WANTED TO THANK YOU FOR 5612 03:52:32,600 --> 03:52:34,400 ALLOWING ME TO PARTICIPATE AND 5613 03:52:34,400 --> 03:52:38,440 FOR ALLOWING ME TO DRAG VICTORIA 5614 03:52:38,440 --> 03:52:42,040 ALONG FOR THIS. 5615 03:52:42,040 --> 03:52:44,400 MARISHKA, I'LL END NOW 5616 03:52:44,400 --> 03:52:46,400 >> ANDY AND VICTORIA THAT WAS 5617 03:52:46,400 --> 03:52:47,960 AMAZING AND WE WANT TO LEAVE 5618 03:52:47,960 --> 03:52:50,680 SOME TIME FOR Q&A. 5619 03:52:50,680 --> 03:52:52,040 THE LAST PRESENTATION WILL BE ME 5620 03:52:52,040 --> 03:52:54,920 AND I WILL ACTUALLY TRUNCATE IT 5621 03:52:54,920 --> 03:52:56,560 A LITTLE BIT BECAUSE I THINK WE 5622 03:52:56,560 --> 03:53:00,640 WANT TO HEAR MORE FROM YOU ALL 5623 03:53:00,640 --> 03:53:11,000 IN THE Q&A SESSION. 5624 03:53:12,960 --> 03:53:17,800 -- SO, THAT IS MY BEAUTIFUL SON 5625 03:53:17,800 --> 03:53:19,560 WHO'S THE INSPIRATION FOR MUCH 5626 03:53:19,560 --> 03:53:25,760 OF MY WORK. 5627 03:53:25,760 --> 03:53:36,240 >> DR. BROWN, ONE SECOND. 5628 03:53:41,880 --> 03:53:42,760 >> I'M GOING TO BE ABLE TO 5629 03:53:42,760 --> 03:53:44,640 SHARE. 5630 03:53:44,640 --> 03:53:46,520 TELL ME WHEN YOU SEE MY 5631 03:53:46,520 --> 03:53:46,880 PRESENTATION. 5632 03:53:46,880 --> 03:53:50,600 7 AND IN PRESENTATION MODE. 5633 03:53:50,600 --> 03:53:52,600 >> WE CAN SEE IT. 5634 03:53:52,600 --> 03:53:54,000 YES. 5635 03:53:54,000 --> 03:53:55,600 >> IF YOU WOULD LIKE -- ARE YOU 5636 03:53:55,600 --> 03:53:57,880 SHARING YOUR SCREEN OR ARE YOU 5637 03:53:57,880 --> 03:54:00,120 SHARING THE ACTUAL PowerPoint? 5638 03:54:00,120 --> 03:54:01,920 >> I'M TRYING TO SHARE THE 5639 03:54:01,920 --> 03:54:02,800 PowerPoint. 5640 03:54:02,800 --> 03:54:04,920 >> SO IF YOU CLICK THE SHARE 5641 03:54:04,920 --> 03:54:09,840 SCREEN OPTION -- THERE IS AN 5642 03:54:09,840 --> 03:54:12,240 OPTION TO SHARE 5643 03:54:12,240 --> 03:54:13,440 >> SO CAN YOU SEE THE 5644 03:54:13,440 --> 03:54:14,560 PRESENTATION? 5645 03:54:14,560 --> 03:54:16,160 >> WE CAN, YES. 5646 03:54:16,160 --> 03:54:18,880 >> IS IT IN PRESENTATION MODE OR 5647 03:54:18,880 --> 03:54:20,360 NOTES MODE? 5648 03:54:20,360 --> 03:54:22,000 >> IT'S IN PRESENTATION MODE. 5649 03:54:22,000 --> 03:54:22,720 >> OKAY. 5650 03:54:22,720 --> 03:54:24,920 WE'LL GO FROM HERE. 5651 03:54:24,920 --> 03:54:26,560 SO THANK YOU, EVERYONE. 5652 03:54:26,560 --> 03:54:33,840 AS MENTIONED I'M MAY WISH CAR -A 5653 03:54:33,840 --> 03:54:35,520 BROWN. 5654 03:54:35,520 --> 03:54:37,600 THERE HAS BEEN A LOT OF GOOD 5655 03:54:37,600 --> 03:54:38,240 INFORMATION. 5656 03:54:38,240 --> 03:54:39,800 WE HOPE TO HAVE A FULLER 5657 03:54:39,800 --> 03:54:41,960 DISCUSSION AFTER I WRAP IT UP. 5658 03:54:41,960 --> 03:54:45,160 7 SO I WANT TO STEP BACK -- WITH 5659 03:54:45,160 --> 03:54:47,360 MY PRESENTATION TO TALK ABOUT 5660 03:54:47,360 --> 03:54:51,360 THE BIGGER SPACE IN SLEEP HEALTH 5661 03:54:51,360 --> 03:54:52,880 DISPARITIES. 5662 03:54:52,880 --> 03:54:54,560 AND PERSONS LIVING WITH DOWN 5663 03:54:54,560 --> 03:54:55,040 SYNDROME. 5664 03:54:55,040 --> 03:54:57,280 FOR THE OVERVIEW I'LL GIVE YOU A 5665 03:54:57,280 --> 03:55:00,320 LITTLE BIT OF WHAT IS KNOWN OR 5666 03:55:00,320 --> 03:55:06,600 THE CURRENTLY AVAILABLE SPACE IN 5667 03:55:06,600 --> 03:55:08,520 SLEEP NDS. 5668 03:55:08,520 --> 03:55:15,320 I WANT TO TALK ABOUT THE 5669 03:55:15,320 --> 03:55:18,480 DISPARITIES. 5670 03:55:18,480 --> 03:55:21,440 IT'S SLEEP AS IT IS REQUIRED FOR 5671 03:55:21,440 --> 03:55:22,960 OPTIMAL HEALTH AND WELL-BEING. 5672 03:55:22,960 --> 03:55:25,880 SO I WANT TO HIGHLIGHT SOME OF 5673 03:55:25,880 --> 03:55:26,840 THAT. 5674 03:55:26,840 --> 03:55:29,440 THEN TO AN EMERGING AREA OF 5675 03:55:29,440 --> 03:55:31,440 SLEEP HEALTH DISPARITIES AND 5676 03:55:31,440 --> 03:55:34,320 THEN TALK A BIT ABOUT THE SLEEP 5677 03:55:34,320 --> 03:55:36,840 RESEARCH AT NIH. 5678 03:55:36,840 --> 03:55:39,960 AND PERSONS LIVING WITH DS. 5679 03:55:39,960 --> 03:55:45,240 SO SLEEP IS REALLY REQUIRED AS I 5680 03:55:45,240 --> 03:55:48,360 SAID FOR OPTIMAL HEALTH AND 5681 03:55:48,360 --> 03:55:50,000 WELL-BEING FOR ALL OF YOUR 5682 03:55:50,000 --> 03:55:50,760 SYSTEMS. 5683 03:55:50,760 --> 03:55:52,840 IT'S CONNECTED TO SO MANY 5684 03:55:52,840 --> 03:55:53,440 THINGS. 5685 03:55:53,440 --> 03:55:56,240 IT CANNOT BE DISTINGUISHED FROM 5686 03:55:56,240 --> 03:55:56,680 YOUR HEALTH. 5687 03:55:56,680 --> 03:55:58,920 SO SLEEP IS REQUIRED FOR YOUR 5688 03:55:58,920 --> 03:56:01,080 DEVELOPMENT AND COGNITIVE 5689 03:56:01,080 --> 03:56:01,600 PROCESSES. 5690 03:56:01,600 --> 03:56:03,480 IT'S ALSO REQUIRED FOR 5691 03:56:03,480 --> 03:56:05,560 MAINTAINING A HEALTHY WEIGHT. 5692 03:56:05,560 --> 03:56:08,960 AS WELL AS OPTIMAL HEALTH AND 5693 03:56:08,960 --> 03:56:11,280 PERFORMANCE. 5694 03:56:11,280 --> 03:56:13,520 DEEPER STAGES OF SLEEP PLAY AN 5695 03:56:13,520 --> 03:56:16,480 IMPORTANT ROLE IN LEARNING BY 5696 03:56:16,480 --> 03:56:19,800 PROMOTING CONSOLIDATION AND 5697 03:56:19,800 --> 03:56:22,000 INTEGRATION AND THESE 5698 03:56:22,000 --> 03:56:23,800 SIGNIFICANTLY AFFECT BEHAVIOR. 5699 03:56:23,800 --> 03:56:26,200 SO NOT HAVING GOOD SLEEP 5700 03:56:26,200 --> 03:56:27,080 UNDERMINES DEVELOPMENT AND COULD 5701 03:56:27,080 --> 03:56:30,960 BE A BURDEN FOR LIFE. 5702 03:56:30,960 --> 03:56:33,320 AND SO SLEEP IN PERSONS WITH 5703 03:56:33,320 --> 03:56:35,960 DOWN SYNDROME LOOKING ACROSS THE 5704 03:56:35,960 --> 03:56:39,280 LIFE-SPAN AND IN PEDIATRICS 5705 03:56:39,280 --> 03:56:40,480 RESEARCHERS HAVE FOUND THAT 5706 03:56:40,480 --> 03:56:42,920 SLEEP PROBLEMS WERE 5707 03:56:42,920 --> 03:56:44,160 SIGNIFICANTLY GREATER IN 5708 03:56:44,160 --> 03:56:47,760 CHILDREN WITH DS. 5709 03:56:47,760 --> 03:56:50,720 7 I'M NOT TELLING YOU ANYTHING 5710 03:56:50,720 --> 03:56:51,360 NEW. 5711 03:56:51,360 --> 03:56:54,960 BUT THOSE SLEEP PROBLEMS INCLUDE 5712 03:56:54,960 --> 03:56:56,880 SEVERAL THINGS SUCH AS 5713 03:56:56,880 --> 03:56:58,320 DIFFICULTY SETTLING IN AT 5714 03:56:58,320 --> 03:56:59,520 BEDTIME. 5715 03:56:59,520 --> 03:57:03,120 RESISTANCE TO BEDTIME. 5716 03:57:03,120 --> 03:57:04,680 ALSO INCLUDES SLEEP DISORDERS 5717 03:57:04,680 --> 03:57:07,080 SUCH AS INSOMNIA. 5718 03:57:07,080 --> 03:57:10,040 ADULTS LIVING WITH DOWN SYNDROME 5719 03:57:10,040 --> 03:57:14,000 HAVE A HIGH PREVALENCE OF 5720 03:57:14,000 --> 03:57:19,360 BEHAVIOR SLEEP DISTURBANCES. 5721 03:57:19,360 --> 03:57:24,520 RANGING FROM 13-86%. 5722 03:57:24,520 --> 03:57:30,160 ADULTS WITH DS HAVE LESS REM 5723 03:57:30,160 --> 03:57:31,400 SLEEP THAT IS NECESSARY FOR 5724 03:57:31,400 --> 03:57:32,880 LEARNING AND MEMORY AND ABOUT A 5725 03:57:32,880 --> 03:57:37,360 THIRD OF ADULTS EXPERIENCE 5726 03:57:37,360 --> 03:57:41,440 DIFFICULTIES INITIATING SLEEP. 5727 03:57:41,440 --> 03:57:43,520 THEY HAVE FREQUENT NIGHTTIME 5728 03:57:43,520 --> 03:57:44,280 AWAKENINGS. 5729 03:57:44,280 --> 03:57:46,640 TALKING IN SLEEP AS WELL AS 5730 03:57:46,640 --> 03:57:47,800 RESTLESS SLEEP. 5731 03:57:47,800 --> 03:57:50,520 SLEEP DISORDERED BREATHING OR 5732 03:57:50,520 --> 03:57:55,200 SLEEP APNEA IS ONE -- THE MOST 5733 03:57:55,200 --> 03:57:56,560 REPORTED SLEEP DISORDER IN 5734 03:57:56,560 --> 03:57:58,760 PEOPLE LIVING WITH DS. 5735 03:57:58,760 --> 03:58:02,760 SO WE'VE BEEN TALKING ABOUT 5736 03:58:02,760 --> 03:58:06,360 APNEA BUT WHAT EXACTLY IS IT. 5737 03:58:06,360 --> 03:58:11,400 SLEEP DISORDER BREATHING IS A 5738 03:58:11,400 --> 03:58:13,480 SPECTRUM FROM PRIMARY SNORING 5739 03:58:13,480 --> 03:58:20,720 ALL THE WAY TO O -- OBSTRUCTIVE 5740 03:58:20,720 --> 03:58:22,080 SLEEP APNEA. 5741 03:58:22,080 --> 03:58:24,160 IT COULD BE PARTIAL OBSTRUCTION 5742 03:58:24,160 --> 03:58:28,360 OR A COMPLETE OBSTRUCTION 5743 03:58:28,360 --> 03:58:29,880 BLOCKAGE DURING SLEEP. 5744 03:58:29,880 --> 03:58:36,920 IT'S PREVALENT -- LIFE-IN 5745 03:58:36,920 --> 03:58:43,720 PERSONS WITH DS * RANGING FROM 5746 03:58:43,720 --> 03:58:45,440 54-90%. 5747 03:58:45,440 --> 03:58:50,440 THE DIFFICULTY IN DIAGNOSIS -- 5748 03:58:50,440 --> 03:58:53,200 THIS ARE EARLY SIGNS THAT ARE 5749 03:58:53,200 --> 03:58:58,320 MISSED AND SLEEP STUDIES CAN BE 5750 03:58:58,320 --> 03:58:59,920 CHALLENGING. 5751 03:58:59,920 --> 03:59:09,040 AND PRIMARY TREATMENTS SUCH AS 5752 03:59:09,040 --> 03:59:10,880 TONSILLECTOMIES AND C PAPS CAN 5753 03:59:10,880 --> 03:59:15,520 BE HELPFUL BUT ARE NOT CURES. 5754 03:59:15,520 --> 03:59:17,920 SLEEP DISORDERS INCREASE MEDICAL 5755 03:59:17,920 --> 03:59:20,000 RISKS SO IN ADDITION TO THE 5756 03:59:20,000 --> 03:59:21,800 NEURAL COGNITIVE CHALLENGES 5757 03:59:21,800 --> 03:59:23,920 THEY'VE BEEN LINKED TO INCREASE 5758 03:59:23,920 --> 03:59:30,800 IN HYPERTENSION. 5759 03:59:30,800 --> 03:59:33,680 YOU HAVE INCREASES IN OBESITY. 5760 03:59:33,680 --> 03:59:35,840 RISK TO OBESITY. 5761 03:59:35,840 --> 03:59:39,240 INCREASED RISK OF DIABETES, 5762 03:59:39,240 --> 03:59:41,000 STROKE AND DEMENTIA. 5763 03:59:41,000 --> 03:59:42,600 A LOT OF THE STUDIES THAT ARE 5764 03:59:42,600 --> 03:59:45,800 CURRENTLY LOOKING AT SLEEP IN 5765 03:59:45,800 --> 03:59:48,760 OLDER POPULATIONS ARE LIVING 5766 03:59:48,760 --> 03:59:53,200 WITH DS ARE FOCUSED ON DEMENTIA 5767 03:59:53,200 --> 03:59:54,840 OR ALZHEIMER'S DISEASE. 5768 03:59:54,840 --> 03:59:57,480 SO SHOWING LANGUAGE FROM WHAT 5769 03:59:57,480 --> 03:59:59,840 SUJATA PRESENTED EARLIER SLEEP 5770 03:59:59,840 --> 04:00:04,440 IS A CHALLENGE AND IN 5771 04:00:04,440 --> 04:00:05,520 MINORITIZED POPULATION. 5772 04:00:05,520 --> 04:00:09,360 RACIAL AND ETHNIC MINORITIES AS 5773 04:00:09,360 --> 04:00:12,560 WELL AS SOCIO ECONOMICALLY 5774 04:00:12,560 --> 04:00:15,000 DISADVANTAGED INDIVIDUALS. 5775 04:00:15,000 --> 04:00:18,080 AND COMPARISON TO THE WHITE 5776 04:00:18,080 --> 04:00:18,480 COUNTERPARTS. 5777 04:00:18,480 --> 04:00:21,240 THEY HAVE SHORTER SLEEP 5778 04:00:21,240 --> 04:00:22,240 DURATION, POOR QUALITY AS WELL 5779 04:00:22,240 --> 04:00:27,280 AS HIGH PERSISTENT AND SEVERE 5780 04:00:27,280 --> 04:00:28,280 AND UNDER DIAGNOSED SLEEP 5781 04:00:28,280 --> 04:00:29,720 DISORDERS. 5782 04:00:29,720 --> 04:00:32,120 AND SO I WANT TO TALK A LITTLE 5783 04:00:32,120 --> 04:00:34,240 BIT ABOUT THE AREA OR THIS 5784 04:00:34,240 --> 04:00:36,120 EMERGING SPACE OF SLEEP HEALTH 5785 04:00:36,120 --> 04:00:36,560 DISPARITIES. 5786 04:00:36,560 --> 04:00:38,480 THERE HAS BEEN A LOT OF 5787 04:00:38,480 --> 04:00:39,840 CONVERSATION TODAY ABOUT THIS 5788 04:00:39,840 --> 04:00:40,400 TOPIC. 5789 04:00:40,400 --> 04:00:42,320 THAT IS WHY WE'RE COMING 5790 04:00:42,320 --> 04:00:46,400 TOGETHER ABOUT INCLUSIVENESS 5791 04:00:46,400 --> 04:00:47,400 DEIA IN THE SPACE OF DOWN 5792 04:00:47,400 --> 04:00:49,360 SYNDROME RESEARCH. 5793 04:00:49,360 --> 04:00:53,560 SO THERE WAS A WORKSHOP PUT 5794 04:00:53,560 --> 04:00:56,120 TOGETHER BY NIH FROM 2018 TRYING 5795 04:00:56,120 --> 04:00:59,240 TO HAMMER HOME AND DEFINE WHAT A 5796 04:00:59,240 --> 04:01:03,600 SLEEP DISPARITY -- WAS. 5797 04:01:03,600 --> 04:01:05,840 SO THAT BEING THE DEFINITION IS 5798 04:01:05,840 --> 04:01:08,160 A DIFFERENCE IN ONE OR MORE 5799 04:01:08,160 --> 04:01:10,520 DIMENSIONS OF SLEEP HEALTH 5800 04:01:10,520 --> 04:01:13,720 INCLUDING REGULARITY, QUALITY, 5801 04:01:13,720 --> 04:01:16,360 ALERTNESS, TIMING, I WON'T HAVE 5802 04:01:16,360 --> 04:01:19,040 ENOUGH TIME TO GET INTO THAT, 5803 04:01:19,040 --> 04:01:20,280 BIOLOGICALLY APPROPRIATE TIME TO 5804 04:01:20,280 --> 04:01:20,800 SLEEP. 5805 04:01:20,800 --> 04:01:23,760 BUT GETTING AND HAVING THESE ON 5806 04:01:23,760 --> 04:01:26,760 A CONSISTENT BASES THAT 5807 04:01:26,760 --> 04:01:28,400 ADVERSELY AFFECT THE 5808 04:01:28,400 --> 04:01:30,360 DISADVANTAGED POPULATIONS. 5809 04:01:30,360 --> 04:01:34,240 WHICH ARE NOT ONLY RACIAL AND 5810 04:01:34,240 --> 04:01:36,960 ETHNIC MINORITIES BUT ALSO 5811 04:01:36,960 --> 04:01:41,080 SEXUAL AND GENDER MINORITIES, 5812 04:01:41,080 --> 04:01:42,720 DISADVANTAGED POPULATIONS AND 5813 04:01:42,720 --> 04:01:43,960 THERE WAS A LOT OF CONVERSATION 5814 04:01:43,960 --> 04:01:45,640 AT THE BEGINNING ABOUT 5815 04:01:45,640 --> 04:01:48,400 UNDERSERVED RURAL POPULATIONS. 5816 04:01:48,400 --> 04:01:50,240 HOWEVER, WHEN IT COMES TO SLEEP 5817 04:01:50,240 --> 04:01:53,000 HEALTH DISPARITIES AND PERSONS 5818 04:01:53,000 --> 04:01:57,200 LIVING WITH DS THERE IS VERY, 5819 04:01:57,200 --> 04:01:58,800 VERY LITTLE TO ALMOST NOTHING 5820 04:01:58,800 --> 04:02:00,960 THAT IS GOING ON IN THE RESEARCH 5821 04:02:00,960 --> 04:02:05,280 BASE SO IT'S A HUGE GAP. 5822 04:02:05,280 --> 04:02:07,640 SO I WANT TO GIVE YOU A LITTLE 5823 04:02:07,640 --> 04:02:12,040 BIT OF THE LANDSCAPE OF FUNDING 5824 04:02:12,040 --> 04:02:14,280 FOR SLEEP AND DS RESEARCH OVER 5825 04:02:14,280 --> 04:02:16,000 THE PAST 10 YEARS. 5826 04:02:16,000 --> 04:02:21,800 THERE IS AN ASTERISK BY 2022 5827 04:02:21,800 --> 04:02:25,200 BECAUSE WE HAVE NOT CLOSED OUT. 5828 04:02:25,200 --> 04:02:29,080 SO THE RESEARCH BETWEEN 2012 AND 5829 04:02:29,080 --> 04:02:31,280 2018 WAS LIMITED AND THEN FOR 5830 04:02:31,280 --> 04:02:35,040 ALL OF YOU WHO DON'T KNOW THERE 5831 04:02:35,040 --> 04:02:36,160 WAS SOMETHING SPECIAL THAT 5832 04:02:36,160 --> 04:02:38,400 HAPPENED IN 2018 WITH THE 5833 04:02:38,400 --> 04:02:39,920 FUNDING AND WITH THE SUPPORT 5834 04:02:39,920 --> 04:02:43,480 FROM THE INCLUDE PROJECT WE ARE 5835 04:02:43,480 --> 04:02:46,040 SEEING GROWTH IN THIS SPACE OF 5836 04:02:46,040 --> 04:02:46,720 SLEEP AND DOWN SYNDROME 5837 04:02:46,720 --> 04:02:48,520 RESEARCH. 5838 04:02:48,520 --> 04:02:50,000 HOWEVER, THERE IS REALLY A 5839 04:02:50,000 --> 04:02:53,360 CHALLENGE WHEN WE TALK ABOUT A 5840 04:02:53,360 --> 04:02:54,560 GEOGRAPHIC LOCATION AND 5841 04:02:54,560 --> 04:02:56,120 DISTRIBUTION OF WHERE THE 5842 04:02:56,120 --> 04:02:57,640 FUNDING IS HAPPENING. 5843 04:02:57,640 --> 04:02:59,440 IT'S NOT MUCH IN THE DATA THAT 5844 04:02:59,440 --> 04:03:01,520 WE'RE BASING IT ON. 5845 04:03:01,520 --> 04:03:04,680 IT WAS PUBLICLY AVAILABLE. 5846 04:03:04,680 --> 04:03:07,040 WAS CURRENTLY FUNDED SO WE SEE 5847 04:03:07,040 --> 04:03:09,640 THAT THERE IS ABOUT 62% THAT IS 5848 04:03:09,640 --> 04:03:13,320 HAPPENING IN THE PHILADELPHIA 5849 04:03:13,320 --> 04:03:16,280 SORRY -- IN THE PENNSYLVANIA AND 5850 04:03:16,280 --> 04:03:18,440 NEW YORK AREA AND TO BE FAIR A 5851 04:03:18,440 --> 04:03:20,880 LOT OF THAT FUNDING IS 5852 04:03:20,880 --> 04:03:23,120 CHILDREN'S HOSPITAL OF 5853 04:03:23,120 --> 04:03:25,720 PHILADELPHIA WHICH HAS BEEN 5854 04:03:25,720 --> 04:03:28,160 DOING AN AMAZING JOB. 5855 04:03:28,160 --> 04:03:31,160 BUT I WANT TO POINT YOU TO THE 5856 04:03:31,160 --> 04:03:33,280 FACT THAT THERE IS VERY LITTLE 5857 04:03:33,280 --> 04:03:35,720 GOING ON IN THE SOUTHEAST AND 5858 04:03:35,720 --> 04:03:37,400 THE SOUTH UNITED STATES WHERE WE 5859 04:03:37,400 --> 04:03:40,720 KNOW DISPARITIES AND HEALTH 5860 04:03:40,720 --> 04:03:41,640 PARTICULARLY FOR UNDER 5861 04:03:41,640 --> 04:03:43,040 REPRESENTED POPULATIONS ARE 5862 04:03:43,040 --> 04:03:43,480 HAPPENING. 5863 04:03:43,480 --> 04:03:45,480 SO THERE IS A LOT OF OPPORTUNITY 5864 04:03:45,480 --> 04:03:47,800 FOR GROWTHS IN THAT AREA. 5865 04:03:47,800 --> 04:03:50,440 WHEN WE LOOK AT THE AWARDS THAT 5866 04:03:50,440 --> 04:03:52,880 WERE FUNDED THERE ARE CERTAINLY 5867 04:03:52,880 --> 04:03:55,200 SEVERAL AREAS THAT POP OUT FOR 5868 04:03:55,200 --> 04:03:57,680 WHAT WE ARE THE APPLICATIONS 5869 04:03:57,680 --> 04:04:00,040 AGAIN THAT HAVE BEEN FUNDED IN 5870 04:04:00,040 --> 04:04:01,840 THE PEDIATRIC SPACE. 5871 04:04:01,840 --> 04:04:02,920 IN AGING THERE. 5872 04:04:02,920 --> 04:04:05,680 ARE APPLICATIONS LOOKING AT 5873 04:04:05,680 --> 04:04:08,440 DEMENTIA AS WELL AS LONG 5874 04:04:08,440 --> 04:04:09,520 RESEARCH. 5875 04:04:09,520 --> 04:04:12,560 COVERING THE SLEEP APNEA AND 5876 04:04:12,560 --> 04:04:14,600 SLEEP DISORDER BREATHING SPACE 5877 04:04:14,600 --> 04:04:19,760 AS WELL AS A STUDY LOOKING AT 5878 04:04:19,760 --> 04:04:21,360 EPIDEMIOLOGY AND LONGITUDINAL 5879 04:04:21,360 --> 04:04:22,880 STUDIES WHICH WE KNOW IS 5880 04:04:22,880 --> 04:04:25,160 CRITICAL IN THE STUDY OF PERSONS 5881 04:04:25,160 --> 04:04:27,520 LIVING WITH DOWN SYNDROME. 5882 04:04:27,520 --> 04:04:29,440 SO THERE IS AN EVOLUTION BUT 5883 04:04:29,440 --> 04:04:32,320 WHAT YOU DON'T SEE IS 5884 04:04:32,320 --> 04:04:35,320 DISPARITIES. 5885 04:04:35,320 --> 04:04:37,320 BUT THERE IS AN EVOLUTION OF 5886 04:04:37,320 --> 04:04:39,400 SLEEP RESEARCH THAT HAS OCCURRED 5887 04:04:39,400 --> 04:04:41,440 OVER THE PAST 10 YEARS WHERE 5888 04:04:41,440 --> 04:04:43,760 WE'RE SEEING MORE APPLICATIONS 5889 04:04:43,760 --> 04:04:46,240 FOCUSING ON SLEEP AND HEALTH 5890 04:04:46,240 --> 04:04:48,000 DISPARITIES BUT FOR RECENT 5891 04:04:48,000 --> 04:04:49,440 APPLICATIONS WE'RE SEEING SOME 5892 04:04:49,440 --> 04:04:52,960 OF THE OVERLAPPING SPACES AND 5893 04:04:52,960 --> 04:04:54,200 RESEARCH IN PERSONS WITH DOWN 5894 04:04:54,200 --> 04:04:55,320 SYNDROME. 5895 04:04:55,320 --> 04:04:58,280 BUT AGAIN, THERE COULD ALWAYS BE 5896 04:04:58,280 --> 04:04:58,480 MORE. 5897 04:04:58,480 --> 04:05:00,520 THAT IS WHY WE'RE HAVING THIS 5898 04:05:00,520 --> 04:05:02,520 CONVERSATION TODAY. 5899 04:05:02,520 --> 04:05:04,000 AND THERE ARE PARTICULAR 5900 04:05:04,000 --> 04:05:06,120 RESEARCH GAPS IN AREAS OF FOCUS 5901 04:05:06,120 --> 04:05:09,920 THAT WE WOULD LIKE THE COMMUNITY 5902 04:05:09,920 --> 04:05:11,960 -- THAT WE FOUND THAT THE 5903 04:05:11,960 --> 04:05:12,800 COMMUNITY COULD BE PAYING 5904 04:05:12,800 --> 04:05:14,480 ATTENTION TO. 5905 04:05:14,480 --> 04:05:18,040 AND SO AGAIN WITH THE 5906 04:05:18,040 --> 04:05:19,480 OPPORTUNITIES WE ARE NOW SEEING 5907 04:05:19,480 --> 04:05:21,840 AN INCREASE IN THE NUMBER OF 5908 04:05:21,840 --> 04:05:22,960 PUBLICATIONS AND THE NUMBER OF 5909 04:05:22,960 --> 04:05:25,400 AREAS AND THE SPACE BUT ONE OF 5910 04:05:25,400 --> 04:05:27,880 THE THINGS THAT WE NOTICED AGAIN 5911 04:05:27,880 --> 04:05:29,440 WHEN WE LOOKED THROUGH THE 5912 04:05:29,440 --> 04:05:31,080 RESEARCH AND HAVE CONVERSATIONS 5913 04:05:31,080 --> 04:05:33,880 LIKE THIS WHEN WE ATTEND 5914 04:05:33,880 --> 04:05:36,040 WORKSHOPS AND TALK TO THE 5915 04:05:36,040 --> 04:05:39,800 INVESTIGATORS WE SEE CLEAR GAPS 5916 04:05:39,800 --> 04:05:42,000 IN THAT SPACE AND I WANTED TO 5917 04:05:42,000 --> 04:05:44,920 OUTLINE A FEW SELECTED GAPS OR 5918 04:05:44,920 --> 04:05:45,560 FUTURE RESEARCH OPPORTUNITIES IN 5919 04:05:45,560 --> 04:05:48,440 THE SPACE OF SLEEP HEALTH 5920 04:05:48,440 --> 04:05:50,400 DISPARITIES AS IT RELATES TO 5921 04:05:50,400 --> 04:05:51,840 PERSONS LIVING WITH DOWN 5922 04:05:51,840 --> 04:05:52,720 SYNDROME. 5923 04:05:52,720 --> 04:05:54,640 SO, AGAIN FIRST OF ALL THERE IS 5924 04:05:54,640 --> 04:05:56,280 RESEARCH IN THE SPACE OF SLEEP 5925 04:05:56,280 --> 04:05:59,040 AND HEALTH DISPARITIES AND 5926 04:05:59,040 --> 04:06:00,960 PERSONS LIVING WITH DS ACROSS 5927 04:06:00,960 --> 04:06:02,720 THE LIFE-SPAN. 5928 04:06:02,720 --> 04:06:06,320 THERE WAS LIMITED DATA AND FEW 5929 04:06:06,320 --> 04:06:09,120 STUDIES THAT WERE GOING ON IN 5930 04:06:09,120 --> 04:06:12,600 ADULTS WITH DS OUTSIDE OF OSA. 5931 04:06:12,600 --> 04:06:14,920 ALSO WE ARE NOT REALLY SEEING 5932 04:06:14,920 --> 04:06:19,000 ANY APPLICATIONS JUST YET 5933 04:06:19,000 --> 04:06:21,880 LOOKING AT SEX AND GENDER 5934 04:06:21,880 --> 04:06:23,680 DIFFERENCES IN SLEEP DISORDERS 5935 04:06:23,680 --> 04:06:26,480 IN THIS POPULATION. 5936 04:06:26,480 --> 04:06:29,160 7 AND THERE ARE ONLY A LIMITED 5937 04:06:29,160 --> 04:06:33,120 NUMBER OF PUBLICATIONS AND WE 5938 04:06:33,120 --> 04:06:36,360 ARE -- EXCITED TO SEE RESEARCH 5939 04:06:36,360 --> 04:06:43,920 IN THE SPACE IN THE STUDY OF 5940 04:06:43,920 --> 04:06:46,560 CIRCADIAN RHYTHMS IN PERSONS 5941 04:06:46,560 --> 04:06:50,000 LIVING WITH DS. 5942 04:06:50,000 --> 04:06:52,120 THE REASON WE'RE HAVING THIS 5943 04:06:52,120 --> 04:06:53,800 WORKSHOP AND THIS CONVERSATION 5944 04:06:53,800 --> 04:06:59,560 IS BECAUSE NOT FACTORING IN DI 5945 04:06:59,560 --> 04:07:01,840 MEANS THAT YOU HAVE INCOMPLETE 5946 04:07:01,840 --> 04:07:03,320 DATA. I WOULD ARGUE THAT IT'S 5947 04:07:03,320 --> 04:07:06,400 POOR SCIENCE AND THAT IT COULD 5948 04:07:06,400 --> 04:07:07,680 TRULY IMPACT MEDICINE AND 5949 04:07:07,680 --> 04:07:08,640 CLINICAL CARE. 5950 04:07:08,640 --> 04:07:10,880 SO WITH THAT I WILL STOP AND 5951 04:07:10,880 --> 04:07:15,600 THEN WE WILL OPEN UP THE PANEL 5952 04:07:15,600 --> 04:07:21,760 FOR Q&A. 5953 04:07:21,760 --> 04:07:23,560 SO THANK YOU. 5954 04:07:23,560 --> 04:07:25,800 SO IF ALL OF THE PANELISTS COULD 5955 04:07:25,800 --> 04:07:27,600 TURN ON THEIR CAMERAS. 5956 04:07:27,600 --> 04:07:30,720 7 AND BE PREPARED FOR QUESTIONS 5957 04:07:30,720 --> 04:07:35,600 AND SO DO WE HAVE ANY QUESTIONS 5958 04:07:35,600 --> 04:07:38,040 IN THE CHAT? 5959 04:07:38,040 --> 04:07:40,040 I ALWAYS HAVE LOTS OF QUESTIONS 5960 04:07:40,040 --> 04:07:44,440 AND SO I'M NOT SEEING ANYTHING 5961 04:07:44,440 --> 04:07:51,440 JUST YET. 5962 04:07:51,440 --> 04:07:53,240 I ALSO DON'T SEE ANY HANDS BUT 5963 04:07:53,240 --> 04:07:55,360 THAT IS OKAY. 5964 04:07:55,360 --> 04:07:58,600 I ALWAYS HAVE LOTS AND LOTS OF 5965 04:07:58,600 --> 04:08:00,160 QUESTIONS. 5966 04:08:00,160 --> 04:08:02,680 OKAY CHIDANAND. 5967 04:08:02,680 --> 04:08:03,920 I'LL HOLD MY QUESTION. 5968 04:08:03,920 --> 04:08:06,200 >> THANK YOU FOR THE FANTASTIC 5969 04:08:06,200 --> 04:08:13,760 SESSION AND REALLY WE'RE ALL 5970 04:08:13,760 --> 04:08:14,720 PASSIONATE *. 5971 04:08:14,720 --> 04:08:17,400 SO MY QUESTION IS FOR DR. MILLER 5972 04:08:17,400 --> 04:08:18,160 AND DR. KELLY. 5973 04:08:18,160 --> 04:08:22,920 DO YOU SEE ANY DIFFERENCES IN 5974 04:08:22,920 --> 04:08:27,760 THE ASSENT PROCESS WHEN YOU ARE 5975 04:08:27,760 --> 04:08:30,760 TRYING TO RECRUIT UNDER 5976 04:08:30,760 --> 04:08:36,000 REPRESENTED GROUPS. 5977 04:08:36,000 --> 04:08:38,600 MEANING ARE THE CHILDREN FIRST 5978 04:08:38,600 --> 04:08:40,280 OF ALL BECAUSE THEY HAVE NOT 5979 04:08:40,280 --> 04:08:43,040 BEEN PARTICIPATING IN A LOT OF 5980 04:08:43,040 --> 04:08:47,280 RESEARCH DO YOU HAVE TO BE AWARE 5981 04:08:47,280 --> 04:08:49,680 OF THAT AND GIVE MORE 5982 04:08:49,680 --> 04:08:53,320 INFORMATION TO THE FAMILIES AND 5983 04:08:53,320 --> 04:08:55,440 THE CHILD FOR THE ASSENT 5984 04:08:55,440 --> 04:08:55,880 PROCESS. 5985 04:08:55,880 --> 04:09:00,200 SO DIFFERENCES IN ASSENT 5986 04:09:00,200 --> 04:09:02,400 DEPENDING ON WHO YOU'RE TRYING 5987 04:09:02,400 --> 04:09:12,960 TO RECRUIT AND THEIR BACKGROUND. 5988 04:09:15,040 --> 04:09:16,720 >> VICTORIA DO YOU WANT TO START 5989 04:09:16,720 --> 04:09:17,560 >> SURE. 5990 04:09:17,560 --> 04:09:19,720 I HAVE FACED MORE CHALLENGES OF 5991 04:09:19,720 --> 04:09:22,480 HOW I THINK ABOUT DESIGNING THE 5992 04:09:22,480 --> 04:09:24,880 RESEARCH TO BEGIN WITH. 5993 04:09:24,880 --> 04:09:26,400 I HAVE NOT WORKED WITH 5994 04:09:26,400 --> 04:09:27,600 INDIVIDUALS WITH DOWN SYNDROME 5995 04:09:27,600 --> 04:09:30,080 BUT IN MY OTHER WORK LOOKING AT 5996 04:09:30,080 --> 04:09:31,600 CHRONIC MEDICAL CONDITIONS FOR 5997 04:09:31,600 --> 04:09:33,320 EXAMPLE I'VE JUST STARTED TO DO 5998 04:09:33,320 --> 04:09:36,640 SOME WORK WITH SICKLE-CELL 5999 04:09:36,640 --> 04:09:38,080 DISEASE AND ONE OF THE 6000 04:09:38,080 --> 04:09:39,360 REQUIREMENTS OF MY STUDY WAS 6001 04:09:39,360 --> 04:09:44,040 THAT TEENS AND THEIR PARENTS 6002 04:09:44,040 --> 04:09:45,720 ENROLLED AND PARTICIPATED 6003 04:09:45,720 --> 04:09:46,600 TOGETHER. 6004 04:09:46,600 --> 04:09:49,480 WELL A LOT OF THOSE OF THE 6005 04:09:49,480 --> 04:09:51,160 FAMILIES THE YOUTH ARE ATTENDING 6006 04:09:51,160 --> 04:09:53,960 THE VISIT WITH AN OLDER SIBLING 6007 04:09:53,960 --> 04:09:56,640 OR ANOTHER FAMILY MEMBER OR EVEN 6008 04:09:56,640 --> 04:09:58,960 ON THEIR OWN SO THE WHOLE BASES 6009 04:09:58,960 --> 04:10:03,920 OF MY STUDY IS LOOKING AT THE 6010 04:10:03,920 --> 04:10:06,480 DIOB AND THAT IS NOT RELEVANT TO 6011 04:10:06,480 --> 04:10:08,760 THAT GROUP * SO I HAVE TO TAKE A 6012 04:10:08,760 --> 04:10:10,800 STEP BACK AND THINK ABOUT 6013 04:10:10,800 --> 04:10:12,360 DESIGNING THE RESEARCH STUDY AND 6014 04:10:12,360 --> 04:10:15,520 THE INCLUSION AND CRITERIA 6015 04:10:15,520 --> 04:10:19,640 DIFFERENTLY BASED ON MORE 6016 04:10:19,640 --> 04:10:21,160 DIVERSE GROUPS THAN I'VE LOOKED 6017 04:10:21,160 --> 04:10:23,080 AT IN THE PAST. 6018 04:10:23,080 --> 04:10:24,640 IT'S HUMBLING. 6019 04:10:24,640 --> 04:10:26,520 THAT IS JUST ONE EXAMPLE THAT IS 6020 04:10:26,520 --> 04:10:28,320 BROADER THAN THE ASSENT PROCESS 6021 04:10:28,320 --> 04:10:32,600 BUT I THINK RELEVANT AS WELL. 6022 04:10:32,600 --> 04:10:37,360 >> I WOULD JUST -- I WAS COMING 6023 04:10:37,360 --> 04:10:39,520 FROM MY PERSPECTIVE OF TALKING 6024 04:10:39,520 --> 04:10:41,160 WITH FAMILIES WHERE WE'RE TRYING 6025 04:10:41,160 --> 04:10:43,360 TO RECRUIT THEM TO DS CONNECT 6026 04:10:43,360 --> 04:10:46,760 AND TALKING ABOUT THE REGISTRY. 6027 04:10:46,760 --> 04:10:48,560 WHAT I'VE FOUND IS THE 6028 04:10:48,560 --> 04:10:49,920 CONVERSATION IS VERY DIFFERENT 6029 04:10:49,920 --> 04:10:51,600 WHEN I'M TALKING TO FAMILIES WHO 6030 04:10:51,600 --> 04:10:53,720 HAVE TRADITIONALLY NOT 6031 04:10:53,720 --> 04:10:55,040 PARTICIPATED IN RESEARCH AND THE 6032 04:10:55,040 --> 04:10:59,560 WHOLE CONSENT OF ON-LINE 6033 04:10:59,560 --> 04:11:05,480 REGISTRY IT SOUNDS SCARY. 6034 04:11:05,480 --> 04:11:10,440 TO MODIFY -- MY -- THE 6035 04:11:10,440 --> 04:11:12,320 INFORMATION I'M SHARING WITH THE 6036 04:11:12,320 --> 04:11:14,960 FAMILIES DEPENDING ON WHO I'M 6037 04:11:14,960 --> 04:11:17,040 CONVERSING W AND THERE ARE SOME 6038 04:11:17,040 --> 04:11:19,680 QUESTIONS IN THE CHAT COMING IN. 6039 04:11:19,680 --> 04:11:21,200 >> THERE ARE SEVERAL COMING INTO 6040 04:11:21,200 --> 04:11:23,360 THE CHAT SO FIRST WE WOULD LIKE 6041 04:11:23,360 --> 04:11:27,680 TO ASK DR. CORBETT, CAN YOU GIVE 6042 04:11:27,680 --> 04:11:31,880 US AN UPDATE -- 6043 04:11:31,880 --> 04:11:32,160 >> SURE. 6044 04:11:32,160 --> 04:11:34,160 THANK YOU FOR THE QUESTION. 6045 04:11:34,160 --> 04:11:36,880 THE INCLUSION OF INDIVIDUALS 6046 04:11:36,880 --> 04:11:38,760 WITH DISABILITIES HAS BEEN AT 6047 04:11:38,760 --> 04:11:40,640 THE FOREFRONT OF THE DISCUSSIONS 6048 04:11:40,640 --> 04:11:43,040 AT NIH. 6049 04:11:43,040 --> 04:11:44,880 I THINK THERE ARE A NUMBER OF 6050 04:11:44,880 --> 04:11:46,000 DRIVERS FOR THIS. 6051 04:11:46,000 --> 04:11:47,760 IT'S ALWAYS BEEN IMPORTANT BUT I 6052 04:11:47,760 --> 04:11:49,360 THINK A COUPLE OF THINGS THAT 6053 04:11:49,360 --> 04:11:54,400 ARE MOVI MOVING THAT CONVERSATIN 6054 04:11:54,400 --> 04:11:57,040 FORWARD WE FOUND THAT INCLUSION 6055 04:11:57,040 --> 04:11:59,400 OF INDIVIDUALS OF CO-MORBIDITIES 6056 04:11:59,400 --> 04:12:01,520 IS A BIG REASON WHY WE DON'T 6057 04:12:01,520 --> 04:12:03,120 HAVE OLDER INDIVIDUALS IN 6058 04:12:03,120 --> 04:12:04,360 RESEARCH. 6059 04:12:04,360 --> 04:12:06,240 AS WE DRILL DOWN LOOKING AT 6060 04:12:06,240 --> 04:12:08,000 INDIVIDUALS WITH DISABILITIES 6061 04:12:08,000 --> 04:12:09,240 WHO ARE OFTEN EXCLUDED FROM 6062 04:12:09,240 --> 04:12:14,680 RESEARCH BECAUSE OF INCLUSION 6063 04:12:14,680 --> 04:12:17,320 AND EXCLUSION CRITERIA THAT ARE 6064 04:12:17,320 --> 04:12:17,960 QUITE NARROW. 6065 04:12:17,960 --> 04:12:21,840 WE ALSO HAVE BEEN LOOKING AT 6066 04:12:21,840 --> 04:12:24,720 THIS IN LIGHT OF THE COVID-19 6067 04:12:24,720 --> 04:12:26,720 PANDEMIC IN WHICH WE SAW THE 6068 04:12:26,720 --> 04:12:29,520 DEVASTATE IS IMPACT OF COVID-19 6069 04:12:29,520 --> 04:12:32,400 ON INDIVIDUALS WITH DISABILITIES 6070 04:12:32,400 --> 04:12:35,040 PARTICULARLY INDIVIDUALS WITH 6071 04:12:35,040 --> 04:12:36,240 INTELLECTUAL DISABILITIES. 6072 04:12:36,240 --> 04:12:38,360 IF WE DON'T HAVE PEOPLE WITH 6073 04:12:38,360 --> 04:12:42,480 DISABILITIES IN OUR RESEARCH WE 6074 04:12:42,480 --> 04:12:44,600 DON'T UNDERSTAND WHY THINGS WHY 6075 04:12:44,600 --> 04:12:46,520 CONDITIONS AFFECT PEOPLE 6076 04:12:46,520 --> 04:12:47,600 DIFFERENTLY. 6077 04:12:47,600 --> 04:12:50,560 HOW TREATMENTS MAY WORK 6078 04:12:50,560 --> 04:12:51,120 DIFFERENTLY. 6079 04:12:51,120 --> 04:12:52,560 IT'S IMPORTANT IN TERMS OF 6080 04:12:52,560 --> 04:12:53,560 MOVING FORWARD. 6081 04:12:53,560 --> 04:12:58,640 I THINK THAT OUR FOCUS HAS BEEN 6082 04:12:58,640 --> 04:13:00,600 ON LOOKING AT THE BARRIERS AND 6083 04:13:00,600 --> 04:13:02,680 HOW TO OVERCOME THEM. 6084 04:13:02,680 --> 04:13:06,960 WE FIND THAT WHAT WORKS BEST FOR 6085 04:13:06,960 --> 04:13:09,080 ONE GROUP MAY BE A BEST PRACTICE 6086 04:13:09,080 --> 04:13:11,680 FOR EVERYONE BUT THAT'S NOT 6087 04:13:11,680 --> 04:13:13,320 ALWAYS THE CASE. 6088 04:13:13,320 --> 04:13:15,280 I APPRECIATE THE INPUT AND THE 6089 04:13:15,280 --> 04:13:16,440 OPPORTUNITY TO BE HERE AS WE 6090 04:13:16,440 --> 04:13:18,000 CONTINUE TO THINK ABOUT THIS. 6091 04:13:18,000 --> 04:13:20,400 AND REALLY ENCOURAGE YOU TO KEEP 6092 04:13:20,400 --> 04:13:21,200 THIS CONVERSATION GOING. 6093 04:13:21,200 --> 04:13:24,440 BECAUSE THIS IS A REALLY 6094 04:13:24,440 --> 04:13:27,360 CRITICAL POINT THAT WE NEED TO 6095 04:13:27,360 --> 04:13:29,320 ADDRESS AND THAT WE JUST AREN'T 6096 04:13:29,320 --> 04:13:31,560 I THINK WE'RE NOT QUITE WHERE WE 6097 04:13:31,560 --> 04:13:35,400 NEED TO BE IN TERMS OF THE 6098 04:13:35,400 --> 04:13:37,080 INCLUSION OF INDIVIDUALS WITH 6099 04:13:37,080 --> 04:13:38,400 DISABILITY IN RESEARCH. 6100 04:13:38,400 --> 04:13:41,160 IT'S A PARADIGM SHIFT AND WE 6101 04:13:41,160 --> 04:13:42,160 NEED TO KEEP THE CONVERSATION 6102 04:13:42,160 --> 04:13:42,960 GOING. 6103 04:13:42,960 --> 04:13:45,520 >> THANK YOU SO MUCH, 6104 04:13:45,520 --> 04:13:45,840 DR. CORBETT. 6105 04:13:45,840 --> 04:13:46,040 AGREED. 6106 04:13:46,040 --> 04:13:49,080 THERE IS A QUESTION -- DIRECTED 6107 04:13:49,080 --> 04:13:50,480 TO DR. ROSSER. 6108 04:13:50,480 --> 04:13:53,920 DOES ALL OF US INCLUDE UNDER 18 6109 04:13:53,920 --> 04:13:58,040 AND INDIVIDUALS WITH ID? 6110 04:13:58,040 --> 04:14:01,360 I THOUGHT THESE GROUPS WERE 6111 04:14:01,360 --> 04:14:01,840 EXCLUDED. 6112 04:14:01,840 --> 04:14:03,360 HAS THIS CHANGED? 6113 04:14:03,360 --> 04:14:04,760 >> CURRENTLY IT HAS NOT. 6114 04:14:04,760 --> 04:14:06,640 WE'RE NOT ENROLLING ANYONE UNDER 6115 04:14:06,640 --> 04:14:08,800 THE AGE OF 18 RIGHT NOW BUT THE 6116 04:14:08,800 --> 04:14:11,360 HOPES ARE TO START ENROLLING 6117 04:14:11,360 --> 04:14:13,440 CHILDREN INITIALLY FROM THE AGES 6118 04:14:13,440 --> 04:14:14,760 OF BIRTH TO SIX. 6119 04:14:14,760 --> 04:14:18,040 BY THE END OF 2023. 6120 04:14:18,040 --> 04:14:22,920 POSSIBLY END OF 24. 6121 04:14:22,920 --> 04:14:24,800 THE PROGRAM IS LOOKING TO HIRE 6122 04:14:24,800 --> 04:14:29,040 AN EXECUTIVE DIRECTOR FOR 6123 04:14:29,040 --> 04:14:31,240 PEDIATRIC ENROLLMENT. 6124 04:14:31,240 --> 04:14:35,640 THERE IS NOT AN A SENT PROCESS 6125 04:14:35,640 --> 04:14:38,480 IN PLACE YET. 6126 04:14:38,480 --> 04:14:40,280 SO HOPEFULLY WE'LL SEE THAT 6127 04:14:40,280 --> 04:14:42,800 COMING IN THE NEXT FEW YEARS AS 6128 04:14:42,800 --> 04:14:43,400 WELL. 6129 04:14:43,400 --> 04:14:44,640 >> THANK YOU. 6130 04:14:44,640 --> 04:14:46,600 ALSO DIRECTED TO YOU. 6131 04:14:46,600 --> 04:14:48,400 YOU SHOWED SOME PIE CHARTS 6132 04:14:48,400 --> 04:14:51,960 REGARDING PARTICIPANT 6133 04:14:51,960 --> 04:14:53,720 DEMOGRAPHICS AND DOWN SYNDROME 6134 04:14:53,720 --> 04:14:55,400 AND THEN I LOST THE QUESTION 6135 04:14:55,400 --> 04:14:56,880 BECAUSE THERE ARE LOTS OF 6136 04:14:56,880 --> 04:14:57,240 COMMENTS. 6137 04:14:57,240 --> 04:15:07,920 7 -- MY COMPUTER I -- IS ACTING- 6138 04:15:14,480 --> 04:15:16,400 >> IF I'M NOT ABLE TO GRAB IT 6139 04:15:16,400 --> 04:15:18,600 QUICKLY AND PUT IT IN THE CHAT 6140 04:15:18,600 --> 04:15:20,520 I'LL MAKE SURE WE HAVE IT TO 6141 04:15:20,520 --> 04:15:20,840 SEND OUT 6142 04:15:20,840 --> 04:15:22,840 >> THE THANK YOU FOR THAT. 6143 04:15:22,840 --> 04:15:25,160 SO I DID HAVE A COUPLE OF 6144 04:15:25,160 --> 04:15:25,720 QUESTIONS. 6145 04:15:25,720 --> 04:15:27,600 WE'RE WAITING FOR MORE QUESTIONS 6146 04:15:27,600 --> 04:15:29,240 TO COME THROUGH THE CHAT. 6147 04:15:29,240 --> 04:15:32,800 AND IT WAS THE FIRST ONE WAS FOR 6148 04:15:32,800 --> 04:15:40,000 DR. ROSSER. 6149 04:15:40,000 --> 04:15:45,560 SO THERE WAS THIS WAS FOR DR. -- 6150 04:15:45,560 --> 04:15:49,800 KELLY. 6151 04:15:49,800 --> 04:15:51,760 ONE OF THE THINGS THAT WAS 6152 04:15:51,760 --> 04:15:53,600 REALLY INTERESTING THAT YOU SAID 6153 04:15:53,600 --> 04:15:56,240 WAS ABOUT THE NEURO COGNITIVE 6154 04:15:56,240 --> 04:15:57,760 QUESTIONNAIRES AND WHO CAN 6155 04:15:57,760 --> 04:15:59,360 ADMINISTER THE TEST PARTICULARLY 6156 04:15:59,360 --> 04:16:01,200 AROUND LANGUAGES. 6157 04:16:01,200 --> 04:16:05,160 THERE WAS A CONVERSATION EARLIER 6158 04:16:05,160 --> 04:16:07,240 IN THE DAY ABOUT THE TEST GOING 6159 04:16:07,240 --> 04:16:10,120 TO DIFFERENT LANGUAGES WHETHER 6160 04:16:10,120 --> 04:16:12,840 IT WAS SPANISH OR OTHERS. 6161 04:16:12,840 --> 04:16:20,280 IS THERE A GROUP OF PEOPLE THAT 6162 04:16:20,280 --> 04:16:22,360 CAN ADMINISTER THE TEST. 6163 04:16:22,360 --> 04:16:24,880 DO WE NEED TO RAISE AWARENESS OR 6164 04:16:24,880 --> 04:16:26,720 TRAIN MORE PEOPLE TO BE ABLE TO 6165 04:16:26,720 --> 04:16:29,440 ADMINISTER THESE TESTS IN 6166 04:16:29,440 --> 04:16:30,800 POPULATIONS WITH DIFFERENT 6167 04:16:30,800 --> 04:16:31,640 LANGUAGES? 6168 04:16:31,640 --> 04:16:34,160 I WANT TO GET MORE FROM YOU ON 6169 04:16:34,160 --> 04:16:35,960 THAT TOPIC. 6170 04:16:35,960 --> 04:16:36,600 >> ABSOLUTELY. 6171 04:16:36,600 --> 04:16:41,360 SO WE OBVIOUSLY WANTED TO 6172 04:16:41,360 --> 04:16:43,320 INCLUDE A DIVERSE POPULATION. 6173 04:16:43,320 --> 04:16:48,280 AND TYPICALLY AT CHOP WHEN WE'RE 6174 04:16:48,280 --> 04:16:50,360 GOING TO DO NEURO DEVELOPMENTAL 6175 04:16:50,360 --> 04:16:54,480 WORK WE WORK WITH ONE OF THE CTA 6176 04:16:54,480 --> 04:16:56,240 FUNDING COURSE WHERE THERE ARE 6177 04:16:56,240 --> 04:16:59,560 NEURO PSYCHOLOGISTEST AND 6178 04:16:59,560 --> 04:17:00,680 DEVELOPMENTAL SPECIALIST WHO 6179 04:17:00,680 --> 04:17:02,440 WORK WITH OUR YOUTH. 6180 04:17:02,440 --> 04:17:05,120 WE WERE LOOKING AT 6181 04:17:05,120 --> 04:17:08,000 QUESTIONNAIRES AND DOING SOME IN 6182 04:17:08,000 --> 04:17:10,440 PERSON INTERACTIONS WITH 6183 04:17:10,440 --> 04:17:11,480 INDIVIDUALS WITH DOWN SYNDROME 6184 04:17:11,480 --> 04:17:14,520 WHO ARE LARGELY ADULTS. 6185 04:17:14,520 --> 04:17:18,160 OUR PEDIATRIC TEAM DID NOT FEEL 6186 04:17:18,160 --> 04:17:21,480 COMFORTABLE ADMINISTERING 6187 04:17:21,480 --> 04:17:23,240 QUESTIONNAIRES AND TEST A 6188 04:17:23,240 --> 04:17:25,720 BATTERY THAT WAS GEARED TOWARD 6189 04:17:25,720 --> 04:17:26,240 DEMENTIA. 6190 04:17:26,240 --> 04:17:28,960 BECAUSE THEY DON'T HAVE OFFICIAL 6191 04:17:28,960 --> 04:17:29,200 TRAINING. 6192 04:17:29,200 --> 04:17:34,640 SO, THAT IS WHY WE IDENTIFIED 6193 04:17:34,640 --> 04:17:37,840 DR. -- LYDIA -- AT HOPKINS WHO 6194 04:17:37,840 --> 04:17:40,040 DOES THIS HYBRID BETWEEN 6195 04:17:40,040 --> 04:17:42,360 PEDIATRIC AND ADULT AND SHE WAS 6196 04:17:42,360 --> 04:17:46,120 ABLE TO TRAIN OUR TEAM MEMBER. 6197 04:17:46,120 --> 04:17:49,080 OUR TEAM MEMBER IS NOT CURRENTLY 6198 04:17:49,080 --> 04:17:53,080 FLUID IN SPANISH SO COULD NOT 6199 04:17:53,080 --> 04:17:55,120 ADMINISTER THESE BATTERIES NOT 6200 04:17:55,120 --> 04:17:56,320 ONLY BECAUSE SOME OF THE 6201 04:17:56,320 --> 04:17:57,880 QUESTIONNAIRES ARE IN SPANISH 6202 04:17:57,880 --> 04:17:59,560 BUT THERE IS INTERACTION THAT 6203 04:17:59,560 --> 04:18:00,440 HAPPENS. 6204 04:18:00,440 --> 04:18:02,280 CAN YOU SMELL THIS? 6205 04:18:02,280 --> 04:18:05,080 DOES IT SMELL LIKE CLOVES. 6206 04:18:05,080 --> 04:18:07,360 ALTHOUGH I DON'T THINK WE SHOULD 6207 04:18:07,360 --> 04:18:09,000 BE USING CLOVES. 6208 04:18:09,000 --> 04:18:13,120 WE HAVE SHOULD USE CINNAMON. 6209 04:18:13,120 --> 04:18:15,080 I DON'T THINK MANY PEOPLE WOULD 6210 04:18:15,080 --> 04:18:18,680 BE ABLE TO IDENTIFY CLOVES. 6211 04:18:18,680 --> 04:18:20,720 THERE IS SOME CULTURAL 6212 04:18:20,720 --> 04:18:23,600 SENSITIVITY. 6213 04:18:23,600 --> 04:18:28,200 SO WE TRAINED ATEESH TO CONDUCT 6214 04:18:28,200 --> 04:18:30,920 THIS TESTING IN OUR YOUNG ADULTS 6215 04:18:30,920 --> 04:18:33,080 WITH DOWN SYNDROME. 6216 04:18:33,080 --> 04:18:35,000 I DO THINK THERE IS A REAL NEED 6217 04:18:35,000 --> 04:18:37,840 TO BE ABLE TO EXTEND THIS TO 6218 04:18:37,840 --> 04:18:42,480 OTHER PEOPLE WHO DO HAVE 6219 04:18:42,480 --> 04:18:44,080 LANGUAGES OTHER THAN ENGLISH SO 6220 04:18:44,080 --> 04:18:46,800 WE CAN DO A BETTER JOB SERVING. 6221 04:18:46,800 --> 04:18:52,480 I IMAGINE PEOPLE ACROSS THE 6222 04:18:52,480 --> 04:18:54,960 COUNTRY WHO HAVE VARIOUS FORMS 6223 04:18:54,960 --> 04:18:58,520 OF PERHAPS DEMENTIA OR NEURO 6224 04:18:58,520 --> 04:18:59,480 COGNITIVE ISSUES. 6225 04:18:59,480 --> 04:19:01,600 I DON'T KNOW IF I ANSWERED THE 6226 04:19:01,600 --> 04:19:03,920 QUESTION BUT WE DO NEED TO MAKE 6227 04:19:03,920 --> 04:19:06,040 THIS MORE AVAILABLE TO PEOPLE. 6228 04:19:06,040 --> 04:19:08,360 >> THANK YOU FOR THAT. 6229 04:19:08,360 --> 04:19:10,000 THERE IS ANOTHER QUESTION FOR 6230 04:19:10,000 --> 04:19:12,520 BOTH YOU AND DR. MILLER. 6231 04:19:12,520 --> 04:19:14,640 IS THERE CONCERN THAT DURING THE 6232 04:19:14,640 --> 04:19:16,720 ASSENT PROCESS DISCUSSION 6233 04:19:16,720 --> 04:19:18,240 CHILDREN OR THOSE WITH DOWN 6234 04:19:18,240 --> 04:19:19,840 SYNDROME MAY SAY NO AND SHUT 6235 04:19:19,840 --> 04:19:22,480 DOWN AN OPPORTUNITY TO 6236 04:19:22,480 --> 04:19:24,080 PARTICIPATE BEFORE THEY CAN BE 6237 04:19:24,080 --> 04:19:25,600 ENGAGED IN THE PROCESS? 6238 04:19:25,600 --> 04:19:30,320 ALSO HOW AGAIN MY COMPUTER IS -- 6239 04:19:30,320 --> 04:19:31,800 HOW ARE YOU PLANNING ON HAVING 6240 04:19:31,800 --> 04:19:34,040 THE CHILD OR PERSON WITH DS 6241 04:19:34,040 --> 04:19:36,800 PARTICIPATE? 6242 04:19:36,800 --> 04:19:40,960 >> I CAN JUMP IN ON THIS. 6243 04:19:40,960 --> 04:19:44,400 THAT IS AN OPPORTUNITY TO PAUSE 6244 04:19:44,400 --> 04:19:48,840 AND TAKE SOME TIME AND EXPLORE 6245 04:19:48,840 --> 04:19:50,560 THE INDIVIDUAL CONCERNS. 6246 04:19:50,560 --> 04:19:52,240 AND POTENTIAL REASONS FOR SAYING 6247 04:19:52,240 --> 04:19:53,680 NO. 6248 04:19:53,680 --> 04:19:55,200 AND TO ENGAGED IN A 6249 04:19:55,200 --> 04:19:56,000 CONVERSATION. 6250 04:19:56,000 --> 04:19:59,200 I THINK YOUTH IN PARTICULAR NEED 6251 04:19:59,200 --> 04:20:01,720 MORE TIME IN THIS PROCESS OF 6252 04:20:01,720 --> 04:20:03,960 DECISION MAKING THAN WE OFTEN 6253 04:20:03,960 --> 04:20:06,400 HAVE OR HAVE AVAILABLE US TO IN 6254 04:20:06,400 --> 04:20:10,160 A RESEARCHER BUSY CLINICAL 6255 04:20:10,160 --> 04:20:10,960 SETTING. 6256 04:20:10,960 --> 04:20:14,600 AND I THINK IT POINTS TO CONSENT 6257 04:20:14,600 --> 04:20:16,720 AND ASSENT AS A PROCESS OVER 6258 04:20:16,720 --> 04:20:19,240 TIME SO THERE MIGHT BE AN 6259 04:20:19,240 --> 04:20:21,200 INITIAL NO WITH AN OPPORTUNITY 6260 04:20:21,200 --> 04:20:23,840 TO HAVE A CONVERSATION OR 6261 04:20:23,840 --> 04:20:26,440 REENGAGE AT ANOTHER TIME TO SEE 6262 04:20:26,440 --> 04:20:29,760 IF THINGS HAVE CHANGED. 6263 04:20:29,760 --> 04:20:31,680 ULTIMATELY I BELIEVE THAT EVEN 6264 04:20:31,680 --> 04:20:36,200 IF ASSENT IS WAIVED WE HAVE TO 6265 04:20:36,200 --> 04:20:38,960 RESPECT IT AND IF SOMEONE DOES 6266 04:20:38,960 --> 04:20:42,080 NOT WANT TO PARTICIPATE WE 6267 04:20:42,080 --> 04:20:43,440 RESPECT THAT. 6268 04:20:43,440 --> 04:20:44,440 ANDY, DO YOU HAVE THOUGHTS 6269 04:20:44,440 --> 04:20:47,280 >> I WOULD ECCO THAT AND THE WAY 6270 04:20:47,280 --> 04:20:50,200 THAT WE'VE * APPROACHED THIS IS 6271 04:20:50,200 --> 04:20:51,480 TO HAVE A DISCUSSION WITH THE 6272 04:20:51,480 --> 04:20:55,680 CARE GIVER WHO CAN ALERT US AS 6273 04:20:55,680 --> 04:20:58,320 TO IF THERE WILL BE CHALLENGES 6274 04:20:58,320 --> 04:21:00,640 SO THAT WE'RE PREPARED FOR THE 6275 04:21:00,640 --> 04:21:01,320 CONVERSATION. 6276 04:21:01,320 --> 04:21:02,640 IF AN INDIVIDUAL WITH DOWN 6277 04:21:02,640 --> 04:21:05,080 SYNDROME IS NOT READY TO 6278 04:21:05,080 --> 04:21:06,600 PARTICIPATE WE ALWAYS SAY YOU 6279 04:21:06,600 --> 04:21:09,440 ARE WELCOMED TO COME BACK AND IN 6280 04:21:09,440 --> 04:21:10,760 OUR CURRENT RESEARCH STUDIES 6281 04:21:10,760 --> 04:21:12,240 WE'VE ACKNOWLEDGED THAT THERE 6282 04:21:12,240 --> 04:21:14,560 MAY BE SOME CHALLENGES FOR 6283 04:21:14,560 --> 04:21:15,600 INDIVIDUALS WITH DOWN SYNDROME 6284 04:21:15,600 --> 04:21:19,720 TO BE INCLUDED BUT WE STILL 6285 04:21:19,720 --> 04:21:21,640 THINK THAT CARE GIVER VOICE IS 6286 04:21:21,640 --> 04:21:22,600 REALLY IMPORTANT. 6287 04:21:22,600 --> 04:21:24,200 BECAUSE SOME OF THE THINGS THAT 6288 04:21:24,200 --> 04:21:27,080 WE'RE ADDRESSING ARE FEASIBILITY 6289 04:21:27,080 --> 04:21:28,160 AND ACCEPTABILITY. 6290 04:21:28,160 --> 04:21:30,280 SO THE CARE GIVER CAN PROVIDE 6291 04:21:30,280 --> 04:21:34,280 THAT FEEDBACK FOR WHAT WERE THE 6292 04:21:34,280 --> 04:21:34,920 CHALLENGES. 6293 04:21:34,920 --> 04:21:37,160 HOW COULD WE HAVE DONE THIS 6294 04:21:37,160 --> 04:21:38,080 PERHAPS BETTER? 6295 04:21:38,080 --> 04:21:40,000 WAS THERE SOME WORD CHOICES THAT 6296 04:21:40,000 --> 04:21:42,160 WOULD HAVE HELPED. 6297 04:21:42,160 --> 04:21:43,880 I WILL ALSO ACKNOWLEDGE THAT FOR 6298 04:21:43,880 --> 04:21:46,080 SOME OF OUR STUDY PARTICIPANTS 6299 04:21:46,080 --> 04:21:48,760 THEY HAD MORE ANXIETY AFTER 6300 04:21:48,760 --> 04:21:49,840 VIEWING THE VIDEO. 6301 04:21:49,840 --> 04:21:51,720 AND SO THIS IS ONE OF THE 6302 04:21:51,720 --> 04:21:54,680 REASONS THAT WE'RE PURSUING THIS 6303 04:21:54,680 --> 04:21:56,720 STUDY TO LOOK TO GET FEEDBACK 6304 04:21:56,720 --> 04:21:59,040 BECAUSE OF THAT ANXIETY THAT WAS 6305 04:21:59,040 --> 04:21:59,800 PROVOKED. 6306 04:21:59,800 --> 04:22:02,720 IN ADDITION, PARENTS HAVE 6307 04:22:02,720 --> 04:22:05,160 SUGGESTED THAT THE YOUNGER 6308 04:22:05,160 --> 04:22:07,680 CHILDREN PROBABLY WILL DO BETTER 6309 04:22:07,680 --> 04:22:11,160 WITH STORY BOARDS AND THE SOCIAL 6310 04:22:11,160 --> 04:22:14,920 STORIES WHEREAS THE OLDER TEENS 6311 04:22:14,920 --> 04:22:17,320 AND YOUNG ADULTS DO BETTER WITH 6312 04:22:17,320 --> 04:22:18,240 VIDEOS. 6313 04:22:18,240 --> 04:22:20,760 BUT WE HAVE NOT COLLECTED THAT 6314 04:22:20,760 --> 04:22:23,360 DATA SYSTEMATICALLY. 6315 04:22:23,360 --> 04:22:24,680 >> THERE IS A GREAT COMMENT IN 6316 04:22:24,680 --> 04:22:26,120 THE CHAT. 6317 04:22:26,120 --> 04:22:28,120 IT SAYS NOT ONLY ADMINISTERING 6318 04:22:28,120 --> 04:22:30,200 IN OTHER LANGUAGES BUT ALSO 6319 04:22:30,200 --> 04:22:32,200 ENSURING THAT INSTRUMENTS ARE 6320 04:22:32,200 --> 04:22:34,800 DEVELOPED IN DIVERSE POPULATION 6321 04:22:34,800 --> 04:22:37,640 THAT'S IS THAT LANGUAGE APPLIES. 6322 04:22:37,640 --> 04:22:38,840 7 SLANG. 6323 04:22:38,840 --> 04:22:49,280 7 REGARDING CONSENT ASSENT 6324 04:22:50,920 --> 04:22:56,520 SHOULD WE ALSO BE TAKING AS 6325 04:22:56,520 --> 04:22:59,320 RESEARCH PROGRESSES AS DIFFERENT 6326 04:22:59,320 --> 04:23:01,200 PROCEDURES AS PART OF THE 6327 04:23:01,200 --> 04:23:01,680 PROTOCOL. 6328 04:23:01,680 --> 04:23:03,480 THAT IS MORE OF A COMMENT 6329 04:23:03,480 --> 04:23:07,880 >> I WAS COMMENTING THAT I FEEL 6330 04:23:07,880 --> 04:23:10,400 THAT PROTOCOLS THAT HAVE 6331 04:23:10,400 --> 04:23:11,440 DIFFERENT PROCEDURES BECAUSE I 6332 04:23:11,440 --> 04:23:14,360 LOVE THE IDEA OF YOU'RE USING 6333 04:23:14,360 --> 04:23:15,960 STORY BOARDS BUT ALSO MAKING 6334 04:23:15,960 --> 04:23:20,680 SURE THAT WHEN A CHILD OR A CARE 6335 04:23:20,680 --> 04:23:26,520 GIVE ERA SENT AND CONSENT -- A 6336 04:23:26,520 --> 04:23:30,280 CARE GIVER -- ASSENT CONSENT -- 6337 04:23:30,280 --> 04:23:33,480 WHAT HAPPENS IF THE PROCEDURE 6338 04:23:33,480 --> 04:23:34,680 CHANGES. 6339 04:23:34,680 --> 04:23:38,560 WHEN WE'RE * HAVING THE 6340 04:23:38,560 --> 04:23:41,840 CONVERSATION IT'S NOT A ONE TIME 6341 04:23:41,840 --> 04:23:43,640 ASK OF THE FAMILIES. 6342 04:23:43,640 --> 04:23:46,480 I ALSO WANTED TO TOUCH ON WHAT 6343 04:23:46,480 --> 04:23:48,480 DR. KELLY YOU SAID ABOUT ANXIETY 6344 04:23:48,480 --> 04:23:53,320 AND I WONDER IF AS WE SEE MORE 6345 04:23:53,320 --> 04:23:57,320 AND MORE STORY BOARDS ARE USING 6346 04:23:57,320 --> 04:23:59,520 VIDEOS TO SHOW PROCEDURES TO 6347 04:23:59,520 --> 04:24:02,320 FAMILY AS THAT BECOMES THE NORM 6348 04:24:02,320 --> 04:24:05,080 IF THAT WOULD HELP LATER IN 6349 04:24:05,080 --> 04:24:06,760 REDUCING ANXIETY BECAUSE I DON'T 6350 04:24:06,760 --> 04:24:08,120 THINK FAMILIES ARE USED TO 6351 04:24:08,120 --> 04:24:12,040 SEEING THEY ARE USED TO HEARING 6352 04:24:12,040 --> 04:24:14,280 ABOUT THE PROCEDURE BUT I'M NOT 6353 04:24:14,280 --> 04:24:17,640 SURE IF THEY ARE USED TO SEEING 6354 04:24:17,640 --> 04:24:19,040 THE WHOLE PROCEDURE AND MAYBE 6355 04:24:19,040 --> 04:24:23,040 THEN THIS BECOMES A MORE OF A 6356 04:24:23,040 --> 04:24:25,480 NORM, THE ANXIETY MIGHT BE 6357 04:24:25,480 --> 04:24:26,480 ADDRESSED. 6358 04:24:26,480 --> 04:24:28,160 THAT WAS JUST WHAT I THOUGHT. 6359 04:24:28,160 --> 04:24:29,720 IT'S JUST A COMMENT. 6360 04:24:29,720 --> 04:24:32,720 NOT A QUESTION. 6361 04:24:32,720 --> 04:24:35,440 >> CAN I DO A FOLLOW-UP ON THAT? 6362 04:24:35,440 --> 04:24:39,360 THE CONSENT AND ASSENT SPACE 6363 04:24:39,360 --> 04:24:42,080 RESEARCH HAS FOCUSED ON ETHICAL 6364 04:24:42,080 --> 04:24:44,480 ISSUES WHICH VICTORIA IS THERE. 6365 04:24:44,480 --> 04:24:47,520 THERE IS ONLY RECENTLY EMERGING 6366 04:24:47,520 --> 04:24:49,880 WORK IN THE MULTI-MEDIA. 6367 04:24:49,880 --> 04:24:54,520 AND ONLY ONE STUDY THAT I COULD 6368 04:24:54,520 --> 04:24:58,920 FIND IN YOUTH WITH INTELLECTUAL 6369 04:24:58,920 --> 04:25:00,920 DISABILITIES. 6370 04:25:00,920 --> 04:25:04,240 AND A HANDFUL OF STUDIES JUST IN 6371 04:25:04,240 --> 04:25:05,320 CHILDREN USING VIDEO. 6372 04:25:05,320 --> 04:25:08,160 THERE IS A REAL OPPORTUNITY TO 6373 04:25:08,160 --> 04:25:09,840 EXPAND THIS FIELD. 6374 04:25:09,840 --> 04:25:12,360 AND I THINK IT HAS IMPLICATIONS 6375 04:25:12,360 --> 04:25:17,120 NOT ONLY FOR DOWN SYNDROME BUT 6376 04:25:17,120 --> 04:25:19,360 INDIVIDUALS WITH INTELLECTUAL 6377 04:25:19,360 --> 04:25:20,600 DISABILITIES BUT CHILDREN IN 6378 04:25:20,600 --> 04:25:21,120 GENERAL. 6379 04:25:21,120 --> 04:25:27,680 I CANNOT IMAGINE A 10-YEAR-OLD 6380 04:25:27,680 --> 04:25:30,240 WOULD UNDERSTAND. 6381 04:25:30,240 --> 04:25:32,640 >> I WOULD ECCO THAT. 6382 04:25:32,640 --> 04:25:35,240 *. 6383 04:25:35,240 --> 04:25:38,480 PROTOCOL ELSEWHERE LANGUAGE IS 6384 04:25:38,480 --> 04:25:40,920 AN ISSUE AND CULTURAL BARRIERS 6385 04:25:40,920 --> 04:25:43,240 OUR RESEARCHERS DO USE SOME 6386 04:25:43,240 --> 04:25:45,520 VIDEOS TO EXPLAIN THE PROCESS. 6387 04:25:45,520 --> 04:25:52,960 SO WE HAVE WE CAN LOOK TO 6388 04:25:52,960 --> 04:25:54,880 RESEARCHERS WHO HAVE BEEN 6389 04:25:54,880 --> 04:25:57,320 OPERATING IN THOSE AREAS AND 6390 04:25:57,320 --> 04:25:59,240 WORKING AROUND THE CHALLENGES 6391 04:25:59,240 --> 04:26:02,240 AND BARRIERS TO MAKE THE PROCESS 6392 04:26:02,240 --> 04:26:05,120 EASIER FOR THE FAMILIES. 6393 04:26:05,120 --> 04:26:06,280 7 6394 04:26:06,280 --> 04:26:08,280 >> WELL NOW THAT WE'RE AT THE 6395 04:26:08,280 --> 04:26:10,400 TOP OF THE HOUR I WANT TO THANK 6396 04:26:10,400 --> 04:26:15,840 OUR PANELISTS FOR SESSION THREE. 6397 04:26:15,840 --> 04:26:23,640 DR. CORBETT, DR. ROSSER AND 6398 04:26:23,640 --> 04:26:29,640 KELLY AND MILLER AND SUJATA. 6399 04:26:29,640 --> 04:26:30,760 >> THANK YOU TO ALL OF THE 6400 04:26:30,760 --> 04:26:31,160 SPEAKERS. 6401 04:26:31,160 --> 04:26:33,520 WE CAN HAVE AN OPEN DISCUSSION 6402 04:26:33,520 --> 04:26:36,960 FOR ALL OF THE SESSIONS TODAY 6403 04:26:36,960 --> 04:26:38,880 STARTING FROM SESSION ONE. 6404 04:26:38,880 --> 04:26:42,320 THE EXCELLENT PANEL PRESENTATION 6405 04:26:42,320 --> 04:26:48,160 -- BY MS. TARVER AND ALSO 6406 04:26:48,160 --> 04:26:58,320 SESSION 3. 6407 04:26:59,000 --> 04:27:00,600 WERE THERE ANY QUESTIONS OR 6408 04:27:00,600 --> 04:27:01,040 COMMENTS. 6409 04:27:01,040 --> 04:27:02,880 WE CAN GO THROUGH SESSION ONE 6410 04:27:02,880 --> 04:27:03,080 FIRST. 6411 04:27:03,080 --> 04:27:05,840 ANY QUESTIONS REGARDING SESSION 6412 04:27:05,840 --> 04:27:08,800 ONE? 6413 04:27:08,800 --> 04:27:10,280 SUMMARIES THAT WE DID FOR THE 6414 04:27:10,280 --> 04:27:13,080 FAMILIES AND THE RESEARCHERS. 6415 04:27:13,080 --> 04:27:17,520 AND THE EXCELLENT PRESENTATION 6416 04:27:17,520 --> 04:27:28,000 AND THE COMMUNITY ENGAGEMENT. 6417 04:27:31,600 --> 04:27:36,600 I DO NOT SEE ANY RAISED HANDS. 6418 04:27:36,600 --> 04:27:41,200 ARE THERE -- DR. ESPINOZA YOU 6419 04:27:41,200 --> 04:27:42,640 CAME OFF OF MUTE. 6420 04:27:42,640 --> 04:27:48,920 DO YOU HAVE ANYTHING TO ADD? 6421 04:27:48,920 --> 04:27:51,600 >> THANK YOU, SUJATA. 6422 04:27:51,600 --> 04:27:53,600 A LITTLE GRATITUDE FOR YOUR HARD 6423 04:27:53,600 --> 04:27:55,160 WORK AND PUTTING THIS TOGETHER. 6424 04:27:55,160 --> 04:27:56,840 THERE IS CLEARLY A LOT OF WORK 6425 04:27:56,840 --> 04:27:58,760 THAT NEEDS TO BE DONE BUT WE'RE 6426 04:27:58,760 --> 04:28:01,600 ON THE RIGHT TRACK AND HAVING 6427 04:28:01,600 --> 04:28:06,240 NOT ONLY THE -- FINDINGS BUT THE 6428 04:28:06,240 --> 04:28:07,000 AWARENESS. 6429 04:28:07,000 --> 04:28:11,040 IT'S GOING TO BE VERY HELPFUL. 6430 04:28:11,040 --> 04:28:14,360 AVENUE I ALREADY HAVE A DATE 6431 04:28:14,360 --> 04:28:18,400 WITH DOLORES IN NOVEMBER. 6432 04:28:18,400 --> 04:28:20,440 SO THE WORK IS HAPPENING IN 6433 04:28:20,440 --> 04:28:20,840 REALTIME. 6434 04:28:20,840 --> 04:28:22,720 7 6435 04:28:22,720 --> 04:28:23,560 >> YES. 6436 04:28:23,560 --> 04:28:30,640 I'M RE -- REALLY GRATEFUL TO HAE 6437 04:28:30,640 --> 04:28:32,360 REPRESENTATION FROM THE RURAL 6438 04:28:32,360 --> 04:28:32,960 COMMUNITIES. 6439 04:28:32,960 --> 04:28:34,880 AS I SHOWED YOU THE GRAPH THE 6440 04:28:34,880 --> 04:28:37,760 PIE CHART OF DS CONNECT. 6441 04:28:37,760 --> 04:28:41,400 DS CONNECT HAS BEEN -- NEXT YEAR 6442 04:28:41,400 --> 04:28:47,000 IS OUR 10thth 6443 04:28:47,000 --> 04:28:48,040 ANNIVERSARY. 6444 04:28:48,040 --> 04:28:53,200 AND NOW WITH WE ARE FORTUNATE TO 6445 04:28:53,200 --> 04:28:55,280 HAVE FUNDING -- WE CAN ADDRESS 6446 04:28:55,280 --> 04:28:56,920 THE GAPS. 6447 04:28:56,920 --> 04:29:00,680 SO OUR REGISTRY WE CONSTANTLY 6448 04:29:00,680 --> 04:29:05,520 TRY TO OUTREACH TO UNDERSERVED 6449 04:29:05,520 --> 04:29:06,640 POPULATIONS INCLUDING RURAL 6450 04:29:06,640 --> 04:29:08,320 COMMUNITIES AND WE WOULD LOVE TO 6451 04:29:08,320 --> 04:29:12,400 JOIN THE PARTY -- DR. ESPINOZA 6452 04:29:12,400 --> 04:29:15,440 IF YOU'RE ABLE TO. 6453 04:29:15,440 --> 04:29:17,040 SEVERAL OF OUR MEMBERS WERE ALSO 6454 04:29:17,040 --> 04:29:20,000 DOING THIS IS PRECOVID, THEY HAD 6455 04:29:20,000 --> 04:29:22,080 RESEARCH AWARENESS WEEKENDS 6456 04:29:22,080 --> 04:29:23,920 LOOKING AT THE MAP THE GAPS IN 6457 04:29:23,920 --> 04:29:26,240 THE MAP AND WHERE WE NEED TO DO 6458 04:29:26,240 --> 04:29:27,560 MORE OUTREACH. 6459 04:29:27,560 --> 04:29:31,200 AND OUTREACH IS A CONSTANT A 6460 04:29:31,200 --> 04:29:32,360 CONSTANT PROCESS. 6461 04:29:32,360 --> 04:29:35,600 AVENUE AS WE HEARD IN PANEL 2 6462 04:29:35,600 --> 04:29:39,240 THAT BUILDING THE TRUST TO THE 6463 04:29:39,240 --> 04:29:40,320 COMMUNITY HAPPENS OVER TIME. 6464 04:29:40,320 --> 04:29:44,320 IT'S NOT A ONE STOP OR JUST ONE 6465 04:29:44,320 --> 04:29:47,160 TIME ACTIVITY. 6466 04:29:47,160 --> 04:29:51,040 SO I THINK THIS WORKSHOP IS AS 6467 04:29:51,040 --> 04:29:52,760 YOU SAID IS ONE OF THE STEPS IN 6468 04:29:52,760 --> 04:29:53,680 THE RIGHT DIRECTION. 6469 04:29:53,680 --> 04:29:56,920 WE WILL BE FOLLOWING UP THIS 6470 04:29:56,920 --> 04:30:00,120 WORKSHOP WITH MORE MAYBE WEBINAR 6471 04:30:00,120 --> 04:30:01,280 OR SOMETHING FOLLOWING THIS 6472 04:30:01,280 --> 04:30:03,080 WORKSHOP TO KEEP THE DIALOGUE 6473 04:30:03,080 --> 04:30:05,960 GOING TO KEEP THE MOMENTUM 6474 04:30:05,960 --> 04:30:07,120 GOING. 6475 04:30:07,120 --> 04:30:09,360 BECAUSE AS I HAVE PRESENTED THE 6476 04:30:09,360 --> 04:30:11,480 STATUS QUO NEEDS TO CHANGE AND 6477 04:30:11,480 --> 04:30:13,040 IT'S ALL HANDS ON DECKING AND 6478 04:30:13,040 --> 04:30:16,680 RIGHT NOW WITH THE UNITE 6479 04:30:16,680 --> 04:30:17,880 INITIATIVE I KNOW ALL OF THE 6480 04:30:17,880 --> 04:30:22,520 OTHER ICs HAVE THEIR OWN THING 6481 04:30:22,520 --> 04:30:25,280 AND WE HAVE OUR STRIVE 6482 04:30:25,280 --> 04:30:26,440 INITIATIVE. 6483 04:30:26,440 --> 04:30:29,400 INCLUDE IS ALSO FOCUSING ON THE 6484 04:30:29,400 --> 04:30:33,560 DEIA ASPECTS AND TOMORROW THE 6485 04:30:33,560 --> 04:30:36,720 FIRST SESSION -- FOR TOMORROW WE 6486 04:30:36,720 --> 04:30:38,760 WILL BE SHOWING SOME OF THE 6487 04:30:38,760 --> 04:30:40,240 ACTIVITIES THAT WE HAVE BEEN 6488 04:30:40,240 --> 04:30:42,920 DOING AS PART OF INCLUDE TO 6489 04:30:42,920 --> 04:30:47,120 REALLY ENGAGE THE COMMUNITY, 6490 04:30:47,120 --> 04:30:48,760 INCREASE THE DIVERSE 6491 04:30:48,760 --> 04:30:52,480 PARTICIPATION. 6492 04:30:52,480 --> 04:30:53,360 SORRY. 6493 04:30:53,360 --> 04:30:58,840 DID SOMEBODY HAVE A COMMENT? 6494 04:30:58,840 --> 04:31:02,160 AND JUST TO MAKE SURE WHEN WE 6495 04:31:02,160 --> 04:31:03,720 SAID PARTICIPATION IT'S LOOKING 6496 04:31:03,720 --> 04:31:09,800 AT I DON'T WANT TO USE THE WORD 6497 04:31:09,800 --> 04:31:11,160 ECOSYSTEM BUT THE WHOLE 6498 04:31:11,160 --> 04:31:14,800 COMMUNITY THAT SUPPORTS DOWN 6499 04:31:14,800 --> 04:31:15,880 SYNDROME. 6500 04:31:15,880 --> 04:31:17,880 THE RESEARCH TEAM, 6501 04:31:17,880 --> 04:31:19,920 INVESTIGATORS, TRAINEES, 6502 04:31:19,920 --> 04:31:20,680 COORDINATORS. 6503 04:31:20,680 --> 04:31:25,760 SO REALLY APPROACHING THIS FROM 6504 04:31:25,760 --> 04:31:28,240 MULTIPLE DIRECTIONS. 6505 04:31:28,240 --> 04:31:33,440 7 AND WHAT I THOUGHT WAS VERY 6506 04:31:33,440 --> 04:31:35,080 INTERESTING SINCE WE DID THE 6507 04:31:35,080 --> 04:31:36,120 LISTENING SESSION FOR THE 6508 04:31:36,120 --> 04:31:41,520 FAMILIES AND RESEARCHERS THAT 6509 04:31:41,520 --> 04:31:43,960 WORK CLOUD BROUGHT UP A LOT OF 6510 04:31:43,960 --> 04:31:46,320 SIMILAR TOPICS THAT FAMILIES AS 6511 04:31:46,320 --> 04:31:51,240 WELL AS RESEARCHERS MENTIONED. 6512 04:31:51,240 --> 04:31:54,360 TRUST, TRANSPORTATION, FEAR. 6513 04:31:54,360 --> 04:31:56,800 UNDERSTANDING THE FEAR OF THE 6514 04:31:56,800 --> 04:31:57,920 PARTICIPANTS THAT WE'RE TRYING 6515 04:31:57,920 --> 04:31:59,000 TO ENGAGE. 6516 04:31:59,000 --> 04:32:01,000 IT MAY BE DIFFERENT FOR 6517 04:32:01,000 --> 04:32:02,120 DIFFERENT COMMUNITIES SO IT WAS 6518 04:32:02,120 --> 04:32:05,000 INTERESTING TO SEE THE 6519 04:32:05,000 --> 04:32:07,680 SIMILARITY OF THE BARRIERS AND 6520 04:32:07,680 --> 04:32:10,000 CHALLENGES THAT WE TRIED TO 6521 04:32:10,000 --> 04:32:11,120 COLLECT FROM THE LISTENING 6522 04:32:11,120 --> 04:32:11,360 SESSION. 6523 04:32:11,360 --> 04:32:22,480 -- ANY RAISED HANDS?I CANNOT SES 6524 04:32:25,240 --> 04:32:26,280 ON MY SCREEN. 6525 04:32:26,280 --> 04:32:28,720 WE CAN MOVE ON TO SESSION TWO IF 6526 04:32:28,720 --> 04:32:30,800 THERE ARE ANY ADDITIONAL 6527 04:32:30,800 --> 04:32:41,360 THOUGHTS AND FEEDBACK OR INPUT. 6528 04:32:44,760 --> 04:32:46,400 IF THERE ARE ANY THOUGHTS OR 6529 04:32:46,400 --> 04:32:48,320 FEEDBACK YOU MAY ALSO PUT IT 6530 04:32:48,320 --> 04:32:49,080 INTO THE CHAT. 6531 04:32:49,080 --> 04:32:51,400 THIS IS GOING TO BE SAVED AND 6532 04:32:51,400 --> 04:32:54,200 WILL BE PART OF THE SUMMARY. 6533 04:32:54,200 --> 04:32:57,000 I WOULD REALLY LIKE TO GIVE A 6534 04:32:57,000 --> 04:33:01,840 SHOUT OUT TO OUR FABULOUS 6535 04:33:01,840 --> 04:33:03,400 SELF-ADVOCATES. 6536 04:33:03,400 --> 04:33:09,360 THEY ARE VERY BUSY INDIVIDUALS 6537 04:33:09,360 --> 04:33:11,440 AND I APPRECIATE THEIR TAKING 6538 04:33:11,440 --> 04:33:16,640 TIME OUT OF THEIR SCHOOL AND 6539 04:33:16,640 --> 04:33:19,400 YADIRA IS VERY BUSY AND SHE IS 6540 04:33:19,400 --> 04:33:20,960 AN ENTREPRENEUR AND 6541 04:33:20,960 --> 04:33:23,720 PARTICIPATING IN OUR PANEL. 6542 04:33:23,720 --> 04:33:26,600 AND THEIR FEEDBACK WAS REALLY 6543 04:33:26,600 --> 04:33:30,000 SOMETHING THAT WE WILL BE TAKING 6544 04:33:30,000 --> 04:33:30,600 INTO ACCOUNT. 6545 04:33:30,600 --> 04:33:35,000 7 AND OF COURSE ALL OF THE 6546 04:33:35,000 --> 04:33:37,120 FAMILIES THAT PARTICIPATED AND 6547 04:33:37,120 --> 04:33:45,480 THE RESEARCHERS FOR THAT PANEL. 6548 04:33:45,480 --> 04:33:53,680 AND MA -- MARISHKA THANK YOU. 6549 04:33:53,680 --> 04:33:56,640 WE WILL HAVE A CHANCE TO 6550 04:33:56,640 --> 04:33:57,880 PARTICIPATE AGAIN TOMORROW AND 6551 04:33:57,880 --> 04:34:00,920 IF THERE IS ANY ADDITIONAL 6552 04:34:00,920 --> 04:34:03,520 THOUGHT IF YOU HAVE PLEASE PUT 6553 04:34:03,520 --> 04:34:06,040 IT IN THE CHAT AND LET US KNOW. 6554 04:34:06,040 --> 04:34:07,440 SEND US AN E-MAIL. 6555 04:34:07,440 --> 04:34:10,080 LINDA AND I ARE AVAILABLE TO 6556 04:34:10,080 --> 04:34:15,240 AGAIN USE YOUR FEEDBACK AND PUT 6557 04:34:15,240 --> 04:34:18,680 IT IN AN EXECUTIVE SUMMARY SO 6558 04:34:18,680 --> 04:34:20,520 THAT IT IS PART OF THE RECORD 6559 04:34:20,520 --> 04:34:24,840 AND WE CAN LOOK AT ACTIONS THAT 6560 04:34:24,840 --> 04:34:26,720 WE CAN TAKE. 6561 04:34:26,720 --> 04:34:28,840 SO IF I DON'T SEE ANYTHING IN 6562 04:34:28,840 --> 04:34:29,720 THE CHAT. 6563 04:34:29,720 --> 04:34:32,320 THANK YOU, MELISSA FOR THE 6564 04:34:32,320 --> 04:34:33,480 COMMENT. 6565 04:34:33,480 --> 04:34:38,960 AND WE ARE AGAIN GIVING A CHANCE 6566 04:34:38,960 --> 04:34:42,640 FOR THE FANTASTIC SESSION 3. 6567 04:34:42,640 --> 04:34:44,560 ANY ADDITIONAL QUESTIONS FOR 6568 04:34:44,560 --> 04:34:45,400 SESSION 3 SPEAKERS? 6569 04:34:55,840 --> 04:34:58,360 >> SUJATA I CANNOT FIGURE OUT 6570 04:34:58,360 --> 04:35:04,880 HOW --TO RAISE MY HAND. 6571 04:35:04,880 --> 04:35:07,320 I BROUGHT UP THIS ISSUE 6572 04:35:07,320 --> 04:35:08,720 REGARDING SOCIAL SECURITY AND 6573 04:35:08,720 --> 04:35:09,560 TAX LIABILITY. 6574 04:35:09,560 --> 04:35:13,160 IT HASH IN PLACE SINCE 1990. 6575 04:35:13,160 --> 04:35:15,080 IS THIS A CONVERSATION AT THE 6576 04:35:15,080 --> 04:35:18,400 NIH LEVEL TO BEGIN TO ADDRESS 6577 04:35:18,400 --> 04:35:20,600 THIS ISSUE AND TO RAISE THE 6578 04:35:20,600 --> 04:35:23,160 THRESHOLD? 6579 04:35:23,160 --> 04:35:26,360 >> THAT IS A VERY GOOD QUESTION. 6580 04:35:26,360 --> 04:35:32,960 YO-- EVEN IF NIH CANNOT FOLLOW-P 6581 04:35:32,960 --> 04:35:35,200 WHAT WE CAN DO IS NIH LEADS THE 6582 04:35:35,200 --> 04:35:37,400 DOWN SYNDROME CONSORTIUM. 6583 04:35:37,400 --> 04:35:41,040 108 WE HAVE A LOT OF NATIONAL 6584 04:35:41,040 --> 04:35:42,480 ORGANIZATIONS AND INTERNATIONAL 6585 04:35:42,480 --> 04:35:44,960 ORGANIZATIONS AS PART OF THE 6586 04:35:44,960 --> 04:35:45,360 CONSORTIUM. 6587 04:35:45,360 --> 04:35:47,360 SO IF THERE IS A TOPIC THAT WE 6588 04:35:47,360 --> 04:35:49,160 KNOW NEEDS TO BE ADDRESSED AND 6589 04:35:49,160 --> 04:35:53,160 IF THERE ARE POLICIES THAT WE AT 6590 04:35:53,160 --> 04:36:01,800 NIH MAY NOT BE ABLE TO FOLLOW -- 6591 04:36:01,800 --> 04:36:04,480 MS. CORBETT HAS HER HAND RAISED. 6592 04:36:04,480 --> 04:36:06,880 SO MAYBE SHE HAS MORE 6593 04:36:06,880 --> 04:36:07,680 INFORMATION ON THIS. 6594 04:36:07,680 --> 04:36:10,240 WE'RE TRYING TO ADDRESS THE 6595 04:36:10,240 --> 04:36:11,680 DISPARITIES AND WE MAY HAVE TO 6596 04:36:11,680 --> 04:36:12,920 THINK OUTSIDE THE BOX. 6597 04:36:12,920 --> 04:36:17,560 7 IF WE HAVE NOT DONE SOMETHING 6598 04:36:17,560 --> 04:36:21,040 BECAUSE OF POLICIES MAYBE WE 6599 04:36:21,040 --> 04:36:23,240 HAVE TO ADHERE TO THE POLICIES 6600 04:36:23,240 --> 04:36:25,360 BUT MAYBE WE NEED TO EXPAND THE 6601 04:36:25,360 --> 04:36:27,800 CONVERSATION AND SEE IF THERE 6602 04:36:27,800 --> 04:36:30,400 ARE OTHER PARTNERS THAT WE COULD 6603 04:36:30,400 --> 04:36:31,920 COLLABORATE WITH TO ADDRESS 6604 04:36:31,920 --> 04:36:36,400 THESE ISSUES. 6605 04:36:36,400 --> 04:36:38,400 DAWN, DO YOU WANT TO ADD TO 6606 04:36:38,400 --> 04:36:40,600 THIS? 6607 04:36:40,600 --> 04:36:42,360 >> A LITTLE BIT. 6608 04:36:42,360 --> 04:36:46,680 I WOULD SAY THAT -- NIH DOESN'T 6609 04:36:46,680 --> 04:36:49,680 HAVE ANY DIRECT CONTROL OVER THE 6610 04:36:49,680 --> 04:36:51,880 IRS INCOME THRESHOLDS AND WHAT 6611 04:36:51,880 --> 04:36:54,640 IS CONSIDERED TO BE TAXABLE 6612 04:36:54,640 --> 04:36:55,760 INCOME. 6613 04:36:55,760 --> 04:36:57,760 BUT IT HASH UNDER A LOT OF 6614 04:36:57,760 --> 04:37:00,200 DISCUSSION BECAUSE AS I 6615 04:37:00,200 --> 04:37:02,440 MENTIONED THAT THEY CAN ALSO 6616 04:37:02,440 --> 04:37:04,640 LOSE THEIR BENEFITS FOR 6617 04:37:04,640 --> 04:37:05,640 PARTICIPATING. 6618 04:37:05,640 --> 04:37:08,080 7 THIS WAS DISCUSSED. 6619 04:37:08,080 --> 04:37:10,080 THERE WAS A MEETING ON THE 6620 04:37:10,080 --> 04:37:12,640 15th ON PARTICIPANT 6621 04:37:12,640 --> 04:37:13,680 COMPENSATION AND IT WAS 6622 04:37:13,680 --> 04:37:17,240 DISCUSSED IN THAT FORUM AS WELL. 6623 04:37:17,240 --> 04:37:21,560 ORHP IS LOOKING INTO -- A LOT OF 6624 04:37:21,560 --> 04:37:23,680 ISSUES REGARDING PARTICIPANT 6625 04:37:23,680 --> 04:37:24,120 COMPENSATION. 6626 04:37:24,120 --> 04:37:25,640 AND THIS IS ONE. 6627 04:37:25,640 --> 04:37:27,200 THE SECRETARY HAS BEEN VERY 6628 04:37:27,200 --> 04:37:29,200 ENGAGED IN THESE ISSUES. 6629 04:37:29,200 --> 04:37:31,240 SO THERE ARE CONVERSATIONS AT 6630 04:37:31,240 --> 04:37:33,760 THE HIGHEST LEVEL. 6631 04:37:33,760 --> 04:37:37,040 WHAT NIH CAN DO ITSELF PROBABLY 6632 04:37:37,040 --> 04:37:39,720 NOT A LOT BUT WE CAN AND WE ARE 6633 04:37:39,720 --> 04:37:41,360 TRYING TO ELEVATE THESE ISSUES 6634 04:37:41,360 --> 04:37:42,720 TO MAKE SURE THAT PEOPLE ARE 6635 04:37:42,720 --> 04:37:44,080 AWARE. 6636 04:37:44,080 --> 04:37:49,840 >> THANK YOU. 6637 04:37:49,840 --> 04:37:52,920 >> GREAT FEEDBACK, ANDY. 6638 04:37:52,920 --> 04:37:56,480 THIS IS -- WHAT WE GET AT THE 6639 04:37:56,480 --> 04:37:58,360 END OF THE WORKSHOP ARE SOME OF 6640 04:37:58,360 --> 04:38:00,920 THE ISSUE THAT'S WE HAVE NOT 6641 04:38:00,920 --> 04:38:03,080 HEARD BEFORE. 6642 04:38:03,080 --> 04:38:05,000 SO WHEN WE HEAR ABOUT THE ISSUES 6643 04:38:05,000 --> 04:38:06,680 AT LEAST WE CAN FOLLOW-UP AND 6644 04:38:06,680 --> 04:38:09,480 SEE -- WHAT CAN BE DONE. 6645 04:38:09,480 --> 04:38:13,920 IF NIH CANNOT TACKLE IT MAYBE 6646 04:38:13,920 --> 04:38:15,120 THE CONSIDERATION NEEDS TO 6647 04:38:15,120 --> 04:38:20,040 HAPPEN WITH SOMEONE ELSE. 6648 04:38:20,040 --> 04:38:22,040 APPRECIATE BRINGING THIS TOPIC 6649 04:38:22,040 --> 04:38:22,520 UP. 6650 04:38:22,520 --> 04:38:25,560 AND THANK YOU FOR THE REMINDER. 6651 04:38:25,560 --> 04:38:28,160 I MIDST FORGOT THAT I NEED TO 6652 04:38:28,160 --> 04:38:30,080 SPEAK SLOWLY. 6653 04:38:30,080 --> 04:38:31,920 ANY MORE QUESTIONS FOR SESSION 6654 04:38:31,920 --> 04:38:32,960 THREE? 6655 04:38:32,960 --> 04:38:35,200 AND I HAVE TO GIVE A SHOUT OUT 6656 04:38:35,200 --> 04:38:38,680 TO YOUR RESEARCH COORDINATOR, 6657 04:38:38,680 --> 04:38:41,440 ANDY -- WHEN YOU SAID HE IS ALSO 6658 04:38:41,440 --> 04:38:49,480 GETTING HIS CERTIFICATE SPANISH 6659 04:38:49,480 --> 04:38:51,040 LANGUAGE CERTIFICATE, THAT SHOWS 6660 04:38:51,040 --> 04:38:52,880 DEDICATION. 6661 04:38:52,880 --> 04:38:55,240 AND PASSION AND REALLY 6662 04:38:55,240 --> 04:38:59,320 EMPATHIZING WITH THE FAMILIES 6663 04:38:59,320 --> 04:39:02,360 THAT YOU REACH OUT TO. 6664 04:39:02,360 --> 04:39:04,760 SO I HAVE BEEN FORTUNATE TO WORK 6665 04:39:04,760 --> 04:39:06,560 WITH HIM ON TRYING TO CONNECT 6666 04:39:06,560 --> 04:39:07,600 THROUGH DS CONNECT. 6667 04:39:07,600 --> 04:39:10,080 YOU HAVE A GREAT TEAM THERE. 6668 04:39:10,080 --> 04:39:13,000 >> THANK YOU. 6669 04:39:13,000 --> 04:39:15,640 >> ANY MORE QUESTIONS ON SESSION 6670 04:39:15,640 --> 04:39:16,200 3? 6671 04:39:16,200 --> 04:39:18,720 I'M TRYING TO SEE IF ANYONE HAS 6672 04:39:18,720 --> 04:39:24,480 THEIR RAISED HANDS. 6673 04:39:24,480 --> 04:39:27,320 IF NOT TIME IS A BIG GIFT SO WE 6674 04:39:27,320 --> 04:39:30,080 WILL NOT GO ALL THE WAY UNTIL 6675 04:39:30,080 --> 04:39:36,360 5:30 -- BUT I NEED TO GIVE A BIG 6676 04:39:36,360 --> 04:39:39,160 SHOUT OUT TO AND I DON'T WANT TO 6677 04:39:39,160 --> 04:39:44,600 BUTCHER THE NAME -- MR. -- JOSE 6678 04:39:44,600 --> 04:39:49,800 AND MS. LAURA CASTRO WHO CAME TO 6679 04:39:49,800 --> 04:39:51,760 US THROUGH THE TRANSLATION 6680 04:39:51,760 --> 04:39:53,440 SERVICES AND WHO HAVE ACTUALLY 6681 04:39:53,440 --> 04:40:00,280 DONE LIVE SIMULTANEOUS SPANISH 6682 04:40:00,280 --> 04:40:01,600 INTERPRETATION AND I LEARNED 6683 04:40:01,600 --> 04:40:02,680 THAT WORD. 6684 04:40:02,680 --> 04:40:04,640 IT'S INTERPRETATION. 6685 04:40:04,640 --> 04:40:06,720 THEY ARE FOLLOWING WHAT WE'RE 6686 04:40:06,720 --> 04:40:10,000 SAYING AND INTERPRETING IT FOR 6687 04:40:10,000 --> 04:40:11,840 ABOUT 12 FAMILIES THAT NEEDED 6688 04:40:11,840 --> 04:40:12,800 THAT SERVICE. 6689 04:40:12,800 --> 04:40:17,120 SO REALLY GRATEFUL FOR THE NIH 6690 04:40:17,120 --> 04:40:23,240 OFFICE OF THE DIRECTOR -- TO 6691 04:40:23,240 --> 04:40:26,120 HELP US GET THIS SERVICE. 6692 04:40:26,120 --> 04:40:27,920 AND THANK YOU TO ALL OF THE 6693 04:40:27,920 --> 04:40:31,680 PARTICIPANTS FOR OF DAY 1. 6694 04:40:31,680 --> 04:40:34,480 SHOUT OUT TO THE SESSION CHAIRS. 6695 04:40:34,480 --> 04:40:35,080 MODERATOR. 6696 04:40:35,080 --> 04:40:39,360 MY PARTNER IN CRIME MS. LINDA 6697 04:40:39,360 --> 04:40:40,800 GARCIA WHO IS THE CO-LEAD OF 6698 04:40:40,800 --> 04:40:42,240 THIS WORKSHOP. 6699 04:40:42,240 --> 04:40:43,520 COULDN'T HAVE PULLED THIS OFF 6700 04:40:43,520 --> 04:40:45,560 WITHOUT HER INVOLVEMENT. 6701 04:40:45,560 --> 04:40:49,800 SO ALL GOOD THINGS COME TO AN 6702 04:40:49,800 --> 04:40:51,640 END BUT THERE IS ANOTHER HALF A 6703 04:40:51,640 --> 04:40:52,480 DAY TOMORROW. 6704 04:40:52,480 --> 04:40:54,960 SO AS A REMINDER TO THE SPEAKERS 6705 04:40:54,960 --> 04:40:59,600 IF YOU'RE ON TODAY PLEASE TRY TO 6706 04:40:59,600 --> 04:41:01,360 LOG IN 10-15 MINUTES BEFORE THE 6707 04:41:01,360 --> 04:41:03,680 TOP OF THE HOUR. 6708 04:41:03,680 --> 04:41:05,880 IT'S 12:00 P.M. EASTERN TIME SO 6709 04:41:05,880 --> 04:41:08,240 THE SPEAKERS PLEASE TRY TO JOIN 6710 04:41:08,240 --> 04:41:11,000 IN A LITTLE EARLY SO WE CAN HELP 6711 04:41:11,000 --> 04:41:12,760 YOU IF YOU NEED HELP WITH THE 6712 04:41:12,760 --> 04:41:16,160 SLIDES OR ANY TECHNICAL ISSUES. 6713 04:41:16,160 --> 04:41:18,520 THANK YOU SO MUCH AND WITH THAT 6714 04:41:18,520 --> 04:41:22,800 I WILL CLOSE DAY ONE AND SEE YOU 6715 04:41:22,800 --> 00:00:00,000 ALL TOMORROW -- NOON EASTERN.