1 00:00:05,400 --> 00:00:10,280 I'LL BEGIN BY GAVELLING US INTO 2 00:00:10,280 --> 00:00:17,560 THE 32nd NCATS COUNCIL. 3 00:00:17,560 --> 00:00:18,000 WELCOME, EVERYBODY. 4 00:00:18,000 --> 00:00:22,640 IT'S ALWAYS VERY AWKWARD TO DO 5 00:00:22,640 --> 00:00:23,720 THIS VIRTUALLY. 6 00:00:23,720 --> 00:00:26,160 I ONLY HAVE ONE COMPUTER AND ONE 7 00:00:26,160 --> 00:00:27,240 CAMERA SO ALWAYS A LITTLE BIT 8 00:00:27,240 --> 00:00:29,400 AWKWARD BUT NICE TO SEE YOU. 9 00:00:29,400 --> 00:00:31,240 THANK YOU FOR JOINING OUR 32nd 10 00:00:31,240 --> 00:00:33,520 MEETING FOR THE NATIONAL CENTER 11 00:00:33,520 --> 00:00:36,080 FOR ADVANCING TRANSLATIONAL 12 00:00:36,080 --> 00:00:36,640 SCIENCES ADVISORY COUNCIL. 13 00:00:36,640 --> 00:00:39,600 IT'S AN EXCITING DAY AND I LOOK 14 00:00:39,600 --> 00:00:41,640 FORWARD TO SAYING A BIT MORE IN 15 00:00:41,640 --> 00:00:43,040 THE COMMENTS DURING THE OPEN 16 00:00:43,040 --> 00:00:43,680 COUNCIL SESSION. 17 00:00:43,680 --> 00:00:45,200 BEFORE I DO, AS I WELCOME YOU, I 18 00:00:45,200 --> 00:00:47,240 WANT TO TURN IT OVER TO ANNA TO 19 00:00:47,240 --> 00:00:48,560 KICK US OFF WITH MAKING SURE WE 20 00:00:48,560 --> 00:00:50,920 DO ROLL CALL AND A FEW OTHER 21 00:00:50,920 --> 00:00:51,120 THINGS. 22 00:00:51,120 --> 00:00:53,520 ANNA, OVER TO YOU. 23 00:00:53,520 --> 00:00:54,920 >>THANK YOU, JONI. 24 00:00:54,920 --> 00:00:58,560 I'M GOING TO ASK FOR MEMBERS TO 25 00:00:58,560 --> 00:01:09,080 SAY PRESENT WHEN THEIR NAMES ARE 26 00:01:12,600 --> 00:01:12,760 CALLED. 27 00:01:12,760 --> 00:01:17,680 DR. SERGIO 28 00:01:17,680 --> 00:01:27,880 [ROLL CALL] 29 00:01:42,120 --> 00:01:45,280 >>WE HAVE NO MEMBERS 30 00:01:45,280 --> 00:01:50,600 PARTICIPATING IN AN AD HOC 31 00:01:50,600 --> 00:01:52,800 CAPACITY TODAY. 32 00:01:52,800 --> 00:01:55,600 WE'LL HAVE A FEW ANNOUNCEMENTS 33 00:01:55,600 --> 00:02:00,840 FOLLOWED BY A DIRECTOR'S REPORT 34 00:02:00,840 --> 00:02:04,600 AND HAVE ONE CONCEPT AND HAVE 35 00:02:04,600 --> 00:02:05,360 THE DIRECTOR OF THE NIH 36 00:02:05,360 --> 00:02:08,240 EXTRAMURAL REPORT AND UPDATE 37 00:02:08,240 --> 00:02:10,040 FROM THE OFFICE OF SPECIAL 38 00:02:10,040 --> 00:02:10,600 INITIATIVES AND THEN WE'LL 39 00:02:10,600 --> 00:02:20,960 ADJOURN FOR THE DAY. 40 00:02:22,840 --> 00:02:26,360 EVERYONE IS A PANELIST SO YOU'RE 41 00:02:26,360 --> 00:02:28,640 FREE TO SPEAK BUT WE REQUEST YOU 42 00:02:28,640 --> 00:02:32,600 USE THE RAISE HAND FEATURE AND 43 00:02:32,600 --> 00:02:34,840 WAIT TO BE CALLED UPON TO 44 00:02:34,840 --> 00:02:36,880 PROVIDE INPUT AND ALLOW 45 00:02:36,880 --> 00:02:38,120 PRESENTERS TO MOVE THROUGH THEIR 46 00:02:38,120 --> 00:02:38,560 COMMENTS. 47 00:02:38,560 --> 00:02:40,400 WE'RE USING THE VIDEOCAST 48 00:02:40,400 --> 00:02:43,720 FEATURE TODAY. 49 00:02:43,720 --> 00:02:45,640 AUDIENCE MEMBERS MAY SUBMIT 50 00:02:45,640 --> 00:02:50,600 COMMENTS UNTIL FEBRUARY 10 USING 51 00:02:50,600 --> 00:02:53,440 THE SEND LIVE FEEDBACK BUTTON OR 52 00:02:53,440 --> 00:02:55,840 SEND AN E-MAIL TO THE NCATS 53 00:02:55,840 --> 00:02:57,160 COUNCIL INPUT MAILBOX. 54 00:02:57,160 --> 00:03:01,640 MAKE SURE WHEN YOU ARE SPEAKING 55 00:03:01,640 --> 00:03:04,840 YOUR CAMERA IS ON SO YOU ARE 56 00:03:04,840 --> 00:03:05,240 SPOTLIGHTED. 57 00:03:05,240 --> 00:03:08,560 IF YOU'RE NOT ON CAMERA THE 58 00:03:08,560 --> 00:03:10,440 PREVIOUS VIEWER REMAINS 59 00:03:10,440 --> 00:03:10,720 SPOTLIGHTED. 60 00:03:10,720 --> 00:03:12,880 THE FUTURE DATES ARE MEETINGS IN 61 00:03:12,880 --> 00:03:16,800 2023 ARE MAY 25 AND SEPTEMBER 62 00:03:16,800 --> 00:03:17,120 28. 63 00:03:17,120 --> 00:03:19,040 IN 2024, THE JANUARY MEETING 64 00:03:19,040 --> 00:03:21,200 WILL BE ON THE 18th AND 19th AND 65 00:03:21,200 --> 00:03:22,320 THAT WILL WILL BE A VIRTUAL 66 00:03:22,320 --> 00:03:24,200 MEETING AND THEN REGULAR FACE TO 67 00:03:24,200 --> 00:03:26,600 FACE IN-PERSON MEETINGS ON MAY 68 00:03:26,600 --> 00:03:36,920 23 AND SEPTEMBER 26. 69 00:03:44,640 --> 00:03:47,520 AND COULD HAVE A MOTION TO 70 00:03:47,520 --> 00:03:48,800 APPROVE THE MINUTES FOR THE 71 00:03:48,800 --> 00:03:50,240 SEPTEMBER 2022 MEETING? 72 00:03:50,240 --> 00:03:56,760 >>SO MOVED. 73 00:03:56,760 --> 00:04:03,160 >>SECOND. 74 00:04:03,160 --> 00:04:05,400 ALL IN FAVOR? 75 00:04:05,400 --> 00:04:11,840 ANY OPPOSED? 76 00:04:11,840 --> 00:04:12,200 ANY ABSTENTIONS? 77 00:04:12,200 --> 00:04:17,760 WITH THAT THE MINUTES ARE 78 00:04:17,760 --> 00:04:22,160 APPROVED. 79 00:04:22,160 --> 00:04:23,800 SERGIO? 80 00:04:23,800 --> 00:04:25,000 >>I ABSTAIN BECAUSE I WASN'T IN 81 00:04:25,000 --> 00:04:25,640 THE MEETING. 82 00:04:25,640 --> 00:04:28,440 >>THANK YOU. 83 00:04:28,440 --> 00:04:31,040 SO NOW WE ARE ASKING FOR 84 00:04:31,040 --> 00:04:32,400 APPROVAL OF THE NCATS GENERAL 85 00:04:32,400 --> 00:04:35,120 OPERATING PROCEDURES FOR 2023? 86 00:04:35,120 --> 00:04:36,320 WE'RE SEEKING YOUR APPROVAL. 87 00:04:36,320 --> 00:04:38,600 DO WE HAVE A MOTION TO APPROVE 88 00:04:38,600 --> 00:04:41,120 THE GENERAL OPERATING PROCEDURES 89 00:04:41,120 --> 00:04:42,760 FOR 2023? 90 00:04:42,760 --> 00:04:47,640 >>SO MOVED. 91 00:04:47,640 --> 00:04:53,520 >>SECOND. 92 00:04:53,520 --> 00:04:59,640 >>ANY OPPOSED? 93 00:04:59,640 --> 00:05:02,800 ANY ABSTENTIONS? 94 00:05:02,800 --> 00:05:05,320 THE 2023 GENERAL OPERATING 95 00:05:05,320 --> 00:05:06,040 PROCEDURES FOR THE NCATS 96 00:05:06,040 --> 00:05:08,400 ADVISORY COUNCIL HAS BEEN 97 00:05:08,400 --> 00:05:09,000 APPROVED. 98 00:05:09,000 --> 00:05:09,680 BACK FOR THE DIRECTOR'S REPORT. 99 00:05:09,680 --> 00:05:17,640 THANK YOU. 100 00:05:17,640 --> 00:05:20,280 >>OKAY. 101 00:05:20,280 --> 00:05:21,360 THANK YOU SO MUCH ANNA I'M GOING 102 00:05:21,360 --> 00:05:25,640 TO DO A QUICK CHECK TO MAKE SURE 103 00:05:25,640 --> 00:05:34,760 I HAVE CONTROL OF THE OF THE 104 00:05:34,760 --> 00:05:37,640 MOVEMENT OF THE SLIDES. 105 00:05:37,640 --> 00:05:42,840 THANK YOU, ANNA. 106 00:05:42,840 --> 00:05:48,160 I'M EXCITED TO PRESENT THE ROLL 107 00:05:48,160 --> 00:05:56,080 TO COUNCIL NOW AND I'LL HAVE QR 108 00:05:56,080 --> 00:05:57,640 CODES THROUGHOUT AND IN CASE IF 109 00:05:57,640 --> 00:06:00,040 YOU'RE LOOKING AT THE OTHER 110 00:06:00,040 --> 00:06:01,000 CONTENT YOU'LL BE PRESENTING 111 00:06:01,000 --> 00:06:03,160 YOU'LL HAVE A GENERAL OVERVIEW 112 00:06:03,160 --> 00:06:06,360 BUT IF YOU'D LIKE A DEEP DIVE ON 113 00:06:06,360 --> 00:06:07,640 ANYTHING WE'LL HAVE QR CODES TO 114 00:06:07,640 --> 00:06:09,440 DO THAT. 115 00:06:09,440 --> 00:06:10,800 I'LL GET STARTED WITH JUST 116 00:06:10,800 --> 00:06:13,640 KICKING OFF FIRST WITH SOME OF 117 00:06:13,640 --> 00:06:24,200 THE COMINGS AND GOINGS AT NCATS 118 00:06:33,400 --> 00:06:34,520 AND I BECAME THE DIRECTOR AND 119 00:06:34,520 --> 00:06:39,200 IT'S AN HONOR TO HAVE THE ROLE 120 00:06:39,200 --> 00:06:41,520 AND HAVING DONE IT IN AN ACTING 121 00:06:41,520 --> 00:06:42,960 CAPACITY I HAD THE PRIVILEGE AND 122 00:06:42,960 --> 00:06:45,640 HONOR OF WORKING WITH THE 123 00:06:45,640 --> 00:06:47,040 COUNCIL MEMBERS AND ALL THE 124 00:06:47,040 --> 00:06:49,720 NCATS STAFF IN THE CAPACITY FOR 125 00:06:49,720 --> 00:06:51,040 A BIT AND WHAT A GROUP. 126 00:06:51,040 --> 00:06:54,600 I THINK THIS IS VERY EXCITING TO 127 00:06:54,600 --> 00:07:02,560 MOVE FORWARD WITH THE STAFF AT 128 00:07:02,560 --> 00:07:05,400 NCATS AND OUR COUNCIL MEMBERS 129 00:07:05,400 --> 00:07:07,360 AND LOOKING FORWARD TO WORKING 130 00:07:07,360 --> 00:07:08,360 WITH YOU IN THIS CAPACITY AND 131 00:07:08,360 --> 00:07:11,560 THERE'LL BE MORE TO COME AS THE 132 00:07:11,560 --> 00:07:12,600 YEAR PROGRESSES. 133 00:07:12,600 --> 00:07:14,560 JUST A TEASER FOR NOW. 134 00:07:14,560 --> 00:07:20,000 IT'S ALSO EXCITING BECAUSE WE 135 00:07:20,000 --> 00:07:30,680 HAVE NEW COUNCIL MEMBERS, SERGIO 136 00:07:32,320 --> 00:07:33,480 AGUILAR-GAXIOLA IS AN OLD FRIEND 137 00:07:33,480 --> 00:07:35,240 OF MINE AND DID WORK ON 138 00:07:35,240 --> 00:07:40,360 ADDICTION AND EXCITED TO SEE 139 00:07:40,360 --> 00:07:42,920 HIM. 140 00:07:42,920 --> 00:07:45,840 ROBIN MERMELSTEIN AND EXCITED TO 141 00:07:45,840 --> 00:07:51,480 HAVE THE TWO VOICES ON OUR 142 00:07:51,480 --> 00:07:56,480 COUNCIL. 143 00:07:56,480 --> 00:08:00,800 ANNICA WAYMAN WE'VE DONE WORK ON 144 00:08:00,800 --> 00:08:01,880 TRAINING AND CAREER DEVELOPMENT 145 00:08:01,880 --> 00:08:03,920 TO THE UNIVERSITY OF SHADY GROVE 146 00:08:03,920 --> 00:08:06,080 AND SHE'S DOING A TREMENDOUS JOB 147 00:08:06,080 --> 00:08:06,280 THERE. 148 00:08:06,280 --> 00:08:08,480 IT'S EXCITING TO HAVE HER ON OUR 149 00:08:08,480 --> 00:08:13,360 COUNCIL TOO. 150 00:08:13,360 --> 00:08:24,120 WELCOME A BOBOARD AND WE'VE HAD 151 00:08:30,560 --> 00:08:33,080 ANDREW LOWE. 152 00:08:33,080 --> 00:08:34,720 IT'S THEIR LAST COUNCIL AND 153 00:08:34,720 --> 00:08:36,000 THEY'VE BEEN HUGE CONTRIBUTORS 154 00:08:36,000 --> 00:08:37,400 OVER WHAT WE'VE BEEN DOING THE 155 00:08:37,400 --> 00:08:38,600 LAST FEW YEARS SERVING ON 156 00:08:38,600 --> 00:08:40,800 COMMITTEES AND THINKING OF 157 00:08:40,800 --> 00:08:41,640 THINGS RELATED TO RETURN ON 158 00:08:41,640 --> 00:08:43,320 INVESTMENT BUT WE DON'T CALL IT 159 00:08:43,320 --> 00:08:43,520 THAT. 160 00:08:43,520 --> 00:08:45,360 THINGS RELATED TO DERISKING AND 161 00:08:45,360 --> 00:08:49,200 HOW WE CAN FIND AN IMPACT ON THE 162 00:08:49,200 --> 00:08:52,760 ECONOMY THROUGH THE WORK WE DO. 163 00:08:52,760 --> 00:08:54,760 I APPRECIATE YOUR GUIDANCE AND 164 00:08:54,760 --> 00:08:55,760 ADVICE ALONG THE WAY. 165 00:08:55,760 --> 00:08:58,920 THANK YOU SO MUCH TO TED AND 166 00:08:58,920 --> 00:08:59,160 ANDREW. 167 00:08:59,160 --> 00:09:01,640 CONGRATULATIONS ON YOUR TIME 168 00:09:01,640 --> 00:09:02,240 WELL SERVED. 169 00:09:02,240 --> 00:09:04,800 AND WE'RE ALSO STARTING TO BUILD 170 00:09:04,800 --> 00:09:06,800 UP OUR CAPACITY FOR OUR REVIEW 171 00:09:06,800 --> 00:09:07,000 BOARD. 172 00:09:07,000 --> 00:09:10,600 AN EXCITING MOMENT FOR US AND 173 00:09:10,600 --> 00:09:12,000 VERY EXCITED TO HAVE SIMON FROST 174 00:09:12,000 --> 00:09:14,280 JOIN US ON THE REVIEW BOARD. 175 00:09:14,280 --> 00:09:16,520 WE'RE GETTING CLOSER AND CLOSER 176 00:09:16,520 --> 00:09:19,960 TO HAVE THEM AND EXCITED TO SEE 177 00:09:19,960 --> 00:09:21,040 THAT COME TOGETHER AND MORE 178 00:09:21,040 --> 00:09:24,480 INFORMATION WILL BE COMING ONCE 179 00:09:24,480 --> 00:09:26,680 THAT HAPPENS. 180 00:09:26,680 --> 00:09:28,480 LASTLY -- ACTUALLY, I WANT TO 181 00:09:28,480 --> 00:09:30,720 MAKE SURE I MENTION -- I DON'T 182 00:09:30,720 --> 00:09:41,280 KNOW I MENTIONED SIMON'S, SIMON 183 00:09:41,640 --> 00:09:45,040 FROST'S NAME AND HE HAS AN 184 00:09:45,040 --> 00:09:45,920 IMPORTANT VOICE FOR THE RARE 185 00:09:45,920 --> 00:09:47,120 DISEASE GROUP AND EXCITED TO 186 00:09:47,120 --> 00:09:49,720 HAVE HIM AT THE TABLE FOR THE 187 00:09:49,720 --> 00:09:50,200 REVIEW BOARD. 188 00:09:50,200 --> 00:09:55,240 SO THEN THERE'S THE GROUP HERE 189 00:09:55,240 --> 00:09:57,480 ON THE REVIEW BOARD ALSO LEAVING 190 00:09:57,480 --> 00:10:01,400 US AND ANDREW AND TED AND KAREN 191 00:10:01,400 --> 00:10:02,960 AND LIZ HAVE BEEN LONG STANDING 192 00:10:02,960 --> 00:10:06,640 MEMBERS ON THE REVIEW BOARD. 193 00:10:06,640 --> 00:10:11,600 THEY HAVE REALLY PULLED TOGETHER 194 00:10:11,600 --> 00:10:14,600 BEFORE WE WENT ON A BRIEF HIATUS 195 00:10:14,600 --> 00:10:19,760 FOR THE QUORUM, THE REVIEW BOARD 196 00:10:19,760 --> 00:10:21,640 PULLED TOGETHER REPORTS FOR US 197 00:10:21,640 --> 00:10:30,560 TO CONSIDER AND ONCE THE GROUP 198 00:10:30,560 --> 00:10:33,200 RECONVENES I'M EXCITED TO SEE 199 00:10:33,200 --> 00:10:36,520 THE PROCESS AND SAD TO SEE THE 200 00:10:36,520 --> 00:10:39,040 CAN REVIEW BOARD MEMBERS TAKE A 201 00:10:39,040 --> 00:10:40,800 FAREWELL BUT WE MAY REACH OUT 202 00:10:40,800 --> 00:10:41,240 AGAIN. 203 00:10:41,240 --> 00:10:43,760 PLEASE STAY TUNED AND CERTAINLY 204 00:10:43,760 --> 00:10:46,480 YOU'RE ALWAYS FRIENDS OF NCATS. 205 00:10:46,480 --> 00:10:52,880 I ALSO WANTED TO SAY TOO THAT 206 00:10:52,880 --> 00:11:00,800 LILLY PORTILLA IS TAKING OVER AT 207 00:11:00,800 --> 00:11:01,080 NOVAX. 208 00:11:01,080 --> 00:11:02,600 SHE HAS BEEN WITH NCATS SINCE 209 00:11:02,600 --> 00:11:03,920 THE BEGINNING AND ESTABLISHED 210 00:11:03,920 --> 00:11:04,960 THE OFFICE OF STRATEGIC 211 00:11:04,960 --> 00:11:06,840 ALLIANCES AND THE WORK WITH THE 212 00:11:06,840 --> 00:11:11,200 SPIR AND STTR PROGRAMS AND TECH 213 00:11:11,200 --> 00:11:12,720 TRANSFER PROGRAMS. 214 00:11:12,720 --> 00:11:17,640 SHE'S BUILT UP THE PROGRAM AT 215 00:11:17,640 --> 00:11:21,640 NCATS AND AN INCREDIBLE GROUP 216 00:11:21,640 --> 00:11:24,280 AND BALKI WILL BE IN THE ROLE 217 00:11:24,280 --> 00:11:24,720 MOVING FORWARD. 218 00:11:24,720 --> 00:11:26,960 AS MANY WHO HAVE KNOWN HIM HE'LL 219 00:11:26,960 --> 00:11:28,840 STEP IN AND IT WILL BE A 220 00:11:28,840 --> 00:11:29,640 SEAMLESS TRANSITION AND I'M 221 00:11:29,640 --> 00:11:31,080 LOOKING FORWARD TO WORKING WITH 222 00:11:31,080 --> 00:11:36,560 HIM IN THE ACTING ROLE UNTIL WE 223 00:11:36,560 --> 00:11:45,840 CAN FILL THIS ROLE. 224 00:11:45,840 --> 00:11:47,440 SOME SOONER THAN OTHERS 225 00:11:47,440 --> 00:11:48,720 DEPENDING ON WHERE THEY ARE IN 226 00:11:48,720 --> 00:11:49,880 THE PROCESS. 227 00:11:49,880 --> 00:11:50,880 GIVEN NOW IS THE PERMANENT 228 00:11:50,880 --> 00:11:52,880 DIRECTOR I'M ABLE TO MOVE 229 00:11:52,880 --> 00:11:55,760 FORWARD ON FILLING OTHER 230 00:11:55,760 --> 00:11:56,200 POSITIONS. 231 00:11:56,200 --> 00:11:59,240 IT'S RELEASED THAT HOLD, IF YOU 232 00:11:59,240 --> 00:12:00,600 WILL, WE'RE EXCITED TO BE ABLE 233 00:12:00,600 --> 00:12:05,640 TO OPEN UP THE DEPUTY DIRECTOR 234 00:12:05,640 --> 00:12:05,840 ROLE. 235 00:12:05,840 --> 00:12:06,880 WE'RE ESTABLISHING A CHIEF 236 00:12:06,880 --> 00:12:08,440 DIVERSITY OFFICE AND LOOKING 237 00:12:08,440 --> 00:12:09,120 FORWARD FOR THE OFFICE OF 238 00:12:09,120 --> 00:12:10,760 STRATEGIC ALLIANCES AND WE'LL 239 00:12:10,760 --> 00:12:12,400 ALSO BE OPENING UP THE SEARCH 240 00:12:12,400 --> 00:12:15,960 FOR THE DIVISION OF PRE-CLINICAL 241 00:12:15,960 --> 00:12:17,160 INNOVATION AND ANOTHER SEARCH 242 00:12:17,160 --> 00:12:19,960 THAT'S ONGOING IS THE DIVISION 243 00:12:19,960 --> 00:12:21,640 OF RARE DISEASE RESEARCH 244 00:12:21,640 --> 00:12:22,120 INNOVATION DIRECTOR. 245 00:12:22,120 --> 00:12:26,880 A VARIETY OF POSITIONS TO BE 246 00:12:26,880 --> 00:12:29,440 FILLED AND I THINK THIS WILL 247 00:12:29,440 --> 00:12:31,880 HELP US STAND ON MUCH MORE SOLID 248 00:12:31,880 --> 00:12:33,640 FOUNDATION ONCE THE POSITIONS 249 00:12:33,640 --> 00:12:34,120 ARE FILLED. 250 00:12:34,120 --> 00:12:35,960 THEY'LL BE AT FULL CAST AND BE 251 00:12:35,960 --> 00:12:37,440 ABLE TO HIT THE GROUND RUNNING 252 00:12:37,440 --> 00:12:38,480 WHEN THAT'S THERE. 253 00:12:38,480 --> 00:12:39,880 WE LOOK FORWARD TO MOVING AND 254 00:12:39,880 --> 00:12:41,480 WORK IN THE SPACE OVER THE 255 00:12:41,480 --> 00:12:44,280 COMING YEARS -- SORRY, YEAR. 256 00:12:44,280 --> 00:12:46,520 I HOPE IT WON'T TAKE YEARS AND I 257 00:12:46,520 --> 00:12:48,200 HOPE WE'LL HAVE THAT IN PLACE 258 00:12:48,200 --> 00:12:56,600 FAIRLY SOON. 259 00:12:56,600 --> 00:12:59,280 ON A SAD NOTE NCATS HAS 260 00:12:59,280 --> 00:13:00,160 EXPERIENCED THE LOSS OF A COUPLE 261 00:13:00,160 --> 00:13:01,680 COLLEAGUES RECENTLY AND WANT TO 262 00:13:01,680 --> 00:13:04,080 TAKE A MOMENT TO RECOGNIZE THOSE 263 00:13:04,080 --> 00:13:06,640 COLLEAGUES. 264 00:13:06,640 --> 00:13:11,800 PAUL SHINN WAS THE DPI COMPOUND 265 00:13:11,800 --> 00:13:16,640 MANAGEMENT GROUP LEADER AND 266 00:13:16,640 --> 00:13:26,560 PLAYED A ROLE AND CAN THE WORK 267 00:13:26,560 --> 00:13:29,600 AT NCATS AND HAS ENABLED A 268 00:13:29,600 --> 00:13:32,440 VARIETY OF WORK TO DO 269 00:13:32,440 --> 00:13:33,080 COMBINATION COMPOUND SCREENING 270 00:13:33,080 --> 00:13:34,360 AT NCATS AND HE'S BEEN ABLE TO 271 00:13:34,360 --> 00:13:35,760 LEAD THE WORK THAT HE'S BEEN 272 00:13:35,760 --> 00:13:37,280 DOING HAS BEEN ABLE TO LEAD TO A 273 00:13:37,280 --> 00:13:40,680 VARIETY OF GROUPS BEING ABLE TO 274 00:13:40,680 --> 00:13:43,080 DO CANCER CLINICAL TRIALS. 275 00:13:43,080 --> 00:13:45,520 SO HIS WORK HAS BEEN TRULY 276 00:13:45,520 --> 00:13:48,280 INCREDIBLE AND HE WILL BE VERY 277 00:13:48,280 --> 00:13:55,480 MUCH MISSED WITHIN NCATS. 278 00:13:55,480 --> 00:13:58,640 SIMILARLY, JACOB MENSAH HAS 279 00:13:58,640 --> 00:14:00,520 BUILT THE BACK END OF NCATS AND 280 00:14:00,520 --> 00:14:02,440 PULLED THAT ALTOGETHER. 281 00:14:02,440 --> 00:14:03,920 WE'RE VERY SAD ABOUT THE LOSS OF 282 00:14:03,920 --> 00:14:04,720 OUR COLLEAGUES. 283 00:14:04,720 --> 00:14:07,520 I WANTED TO TAKE A MOMENT TO 284 00:14:07,520 --> 00:14:08,520 MENTION THEM AND RECOGNIZE THEIR 285 00:14:08,520 --> 00:14:09,640 WORK AND THEIR CONTRIBUTIONS TO 286 00:14:09,640 --> 00:14:13,120 NCATS. 287 00:14:13,120 --> 00:14:16,720 IN TERMS OF NEWS AND 288 00:14:16,720 --> 00:14:18,760 ANNOUNCEMENTS I WANTED TO START 289 00:14:18,760 --> 00:14:19,960 WITH SOME THINGS HAPPENING 290 00:14:19,960 --> 00:14:21,000 AROUND NIH. 291 00:14:21,000 --> 00:14:23,200 I'LL TALK OF SOME THINGS GOING 292 00:14:23,200 --> 00:14:25,440 ON AT NCATS. 293 00:14:25,440 --> 00:14:27,720 FIRST OF ALL, WHAT WILL BE 294 00:14:27,720 --> 00:14:30,560 HAPPENING AT 3:00 TODAY, MIKE 295 00:14:30,560 --> 00:14:35,280 LAUER THE DEPUTY DIRECTOR FOR 296 00:14:35,280 --> 00:14:36,800 EXTRAMURAL RESEARCH WILL TALK 297 00:14:36,800 --> 00:14:38,080 ABOUT THE NIH DATA MANAGEMENT 298 00:14:38,080 --> 00:14:41,280 SHARING POLICY AND IMPLEM 299 00:14:41,280 --> 00:14:42,080 IMPLEMENT 300 00:14:42,080 --> 00:14:42,480 IMPLEMENTATION. 301 00:14:42,480 --> 00:14:45,120 IT HAD A DATE OF JANUARY 25, 302 00:14:45,120 --> 00:14:46,960 2023 WAS THE IMPLEMENTATION 303 00:14:46,960 --> 00:14:49,640 DATE, YESTERDAY, THE POLICY IS 304 00:14:49,640 --> 00:14:50,000 NOW IMPLEMENTED. 305 00:14:50,000 --> 00:14:51,760 MIKE WILL HIGHLIGHT THE NEW 306 00:14:51,760 --> 00:14:54,720 REQUIREMENTS AND RESOURCES TO 307 00:14:54,720 --> 00:14:55,480 NAVIGATE THIS NEW POLICY. 308 00:14:55,480 --> 00:14:56,960 SO PLEASE STAY TUNED FOR HIS 309 00:14:56,960 --> 00:15:02,040 TALK. 310 00:15:02,040 --> 00:15:04,720 THERE'S BEEN A COUPLE THINGS I'D 311 00:15:04,720 --> 00:15:08,360 LIKE TO MENTION TOO AROUND OTHER 312 00:15:08,360 --> 00:15:10,640 AREAS THAT NIH HAS BEEN WORKING 313 00:15:10,640 --> 00:15:11,760 ON THROUGH THE ADVISORY 314 00:15:11,760 --> 00:15:14,600 COMMITTEE OF THE DIRECTOR. 315 00:15:14,600 --> 00:15:15,880 THEIR MEETING HAPPENED DECEMBER 316 00:15:15,880 --> 00:15:18,080 8 AND 9 AND THERE WERE A FEW 317 00:15:18,080 --> 00:15:19,120 PROPOSALS I THOUGHT WERE 318 00:15:19,120 --> 00:15:20,400 IMPORTANT TO BRING TO YOUR 319 00:15:20,400 --> 00:15:21,640 ATTENTION MAINLY FOR AWARENESS 320 00:15:21,640 --> 00:15:23,040 BUT ONE IN PARTICULAR I'LL 321 00:15:23,040 --> 00:15:24,520 HIGHLIGHT IN A MOMENT THAT I 322 00:15:24,520 --> 00:15:27,240 THINK YOU MIGHT BE EVEN MORE 323 00:15:27,240 --> 00:15:27,600 INTERESTED IN. 324 00:15:27,600 --> 00:15:29,080 THIS ONE I JUST WANTED TO 325 00:15:29,080 --> 00:15:31,960 HIGHLIGHT IS A PROPOSED NEW 326 00:15:31,960 --> 00:15:34,880 FRAMEWORK FOR NIH PEER REVIEW 327 00:15:34,880 --> 00:15:35,160 CRITERIA. 328 00:15:35,160 --> 00:15:36,920 THERE'S A REQUEST FOR 329 00:15:36,920 --> 00:15:38,440 INFORMATION OUT ON THE STREET 330 00:15:38,440 --> 00:15:39,640 NOW AND IT WILL BE OPEN UNTIL 331 00:15:39,640 --> 00:15:40,920 MARCH 2023. 332 00:15:40,920 --> 00:15:42,160 IF YOU GET YOUR PHONE OUT YOU 333 00:15:42,160 --> 00:15:44,800 CAN TAKE A LOOK AT THE QR CODE 334 00:15:44,800 --> 00:15:47,800 AND DOWNLOAD THAT TO BE ABLE TO 335 00:15:47,800 --> 00:15:48,680 FIND MORE INFORMATION. 336 00:15:48,680 --> 00:15:53,200 ESSENTIALLY, THIS IS A WAY TO 337 00:15:53,200 --> 00:15:55,040 REFOCUS THE FIRST LEVEL OF PEER 338 00:15:55,040 --> 00:15:55,440 REVIEW. 339 00:15:55,440 --> 00:15:56,440 THE COUNCIL DOES THE SECOND 340 00:15:56,440 --> 00:16:00,360 LEVEL OF PEER REVIEW AND FOCUS 341 00:16:00,360 --> 00:16:02,120 THE FIRST LEVEL OF PEER REVIEW 342 00:16:02,120 --> 00:16:04,720 AND STREAMLINE IT TO REDUCE 343 00:16:04,720 --> 00:16:07,520 BURDEN ON VIEWERS AND 344 00:16:07,520 --> 00:16:09,640 INCENTIVIZE REVIEW AND HOPE IT 345 00:16:09,640 --> 00:16:12,320 WILL MITIGATE THE BIAS IN THE 346 00:16:12,320 --> 00:16:13,800 PROCESS LOOKING AT INVESTIGATOR 347 00:16:13,800 --> 00:16:15,440 AND ENVIRONMENTS AND THE CONTEXT 348 00:16:15,440 --> 00:16:16,800 OF THE PROPOSED RESEARCH AS 349 00:16:16,800 --> 00:16:19,800 THINGS THAT CAN BE DISCUSSED BUT 350 00:16:19,800 --> 00:16:20,280 NOT NECESSARILY SCORED. 351 00:16:20,280 --> 00:16:22,280 SO PLEASE TAKE A LOOK AT THE 352 00:16:22,280 --> 00:16:22,480 RFI. 353 00:16:22,480 --> 00:16:25,640 IF YOU HAVE ANY THOUGHTS ON THAT 354 00:16:25,640 --> 00:16:30,720 FEEL FREE TO WEIGH IN. 355 00:16:30,720 --> 00:16:31,520 ANOTHER ADVISORY COMMITTEE IN 356 00:16:31,520 --> 00:16:36,040 THE DIRECTOR TOPIC WAS IN 357 00:16:36,040 --> 00:16:37,640 RE-ENVISIONING THE POST-DOCTORAL 358 00:16:37,640 --> 00:16:38,400 TRAINING. 359 00:16:38,400 --> 00:16:40,160 IT WILL BE A SUBCOMMITTEE OUT OF 360 00:16:40,160 --> 00:16:50,640 THE ACD TO LOOK AT THE POSDOC 361 00:16:54,920 --> 00:16:57,320 POSITION AND THERE'S A SHORTAGE 362 00:16:57,320 --> 00:17:00,320 OF Ph.D.s WITHIN THE U.S. AND 363 00:17:00,320 --> 00:17:01,600 SOME ARE GOING TO PERMANENT 364 00:17:01,600 --> 00:17:02,520 POSITIONS. 365 00:17:02,520 --> 00:17:05,160 THIS IS SOMETHING WE WANTED TO 366 00:17:05,160 --> 00:17:06,480 EVALUATE MORE, UNDERSTAND WHAT'S 367 00:17:06,480 --> 00:17:07,880 LEADING TO THAT AND INFLUENCING 368 00:17:07,880 --> 00:17:09,360 THE FACTORS AND TO UNDERSTAND IF 369 00:17:09,360 --> 00:17:14,600 THERE ARE WAYS IN WHICH WE CAN 370 00:17:14,600 --> 00:17:15,800 INCREASE RETENTION INTO THE 371 00:17:15,800 --> 00:17:18,320 Ph.D. POSTDOC WORKFORCE AREA AND 372 00:17:18,320 --> 00:17:20,280 SUPPORT THE TRAINING FOR THE 373 00:17:20,280 --> 00:17:21,640 POSDOCS OR PERHAPS CONSIDER 374 00:17:21,640 --> 00:17:24,000 OTHER WAYS TO MANAGE THAT. 375 00:17:24,000 --> 00:17:25,240 THESE ARE THINGS ON THE TABLE 376 00:17:25,240 --> 00:17:26,040 FOR THE PARTICULAR WORKING GROUP 377 00:17:26,040 --> 00:17:32,560 TO ESTABLISH. 378 00:17:32,560 --> 00:17:33,920 WE EXPECT RECOMMENDATIONS COMING 379 00:17:33,920 --> 00:17:36,920 OUT TOWARDS THE END OF YEAR AND 380 00:17:36,920 --> 00:17:37,960 IF YOU'D LIKE MORE INFORMATION A 381 00:17:37,960 --> 00:17:41,800 QR CODE IS HERE. 382 00:17:41,800 --> 00:17:43,600 THE LAST ONE I WANTED TO MENTION 383 00:17:43,600 --> 00:17:47,880 FROM THE ACD WORK GROUP IS ONE 384 00:17:47,880 --> 00:17:49,000 ON CATALYZING THE DEVELOPMENT 385 00:17:49,000 --> 00:17:52,600 AND USE OF ALTERNATIVE METHODS 386 00:17:52,600 --> 00:17:55,520 TO ADVANCE BIOMEDICAL RESEARCH. 387 00:17:55,520 --> 00:17:56,840 YOU RECOGNIZE THIS MORE DIRECTLY 388 00:17:56,840 --> 00:18:00,080 AS SOME OF THE ACTIVITIES NCATS 389 00:18:00,080 --> 00:18:01,920 HAS BEEN INVOLVED IN IN THINKING 390 00:18:01,920 --> 00:18:07,720 ABOUT THE TISSUE CHIPS AND 3-D 391 00:18:07,720 --> 00:18:09,280 BIO PRINTING AND OTHER 392 00:18:09,280 --> 00:18:10,240 APPROACHES LIKE ARTIFICIAL 393 00:18:10,240 --> 00:18:11,320 INTELLIGENCE AND THINGS OF THAT 394 00:18:11,320 --> 00:18:18,080 NATURE AND THINK ABOUT HOW THE 395 00:18:18,080 --> 00:18:19,200 ALTERNATIVES METHODS CAN BE 396 00:18:19,200 --> 00:18:20,840 EXPANDED TO AND STRENGTHS AND 397 00:18:20,840 --> 00:18:22,520 WEAKNESSES AND HOW TO INTEGRATE 398 00:18:22,520 --> 00:18:25,520 THEM IN THE REGULATORY SPACE AND 399 00:18:25,520 --> 00:18:26,840 WHERE ARE THEY BEST USED IN THE 400 00:18:26,840 --> 00:18:29,040 CONDITIONS AND DISEASES OF KEY 401 00:18:29,040 --> 00:18:30,800 INTEREST AND WHERE THEY MAY NOT 402 00:18:30,800 --> 00:18:31,240 BE WELL USED. 403 00:18:31,240 --> 00:18:33,080 THESE ARE AREAS WE WANT TO START 404 00:18:33,080 --> 00:18:35,080 TO HIGHLIGHT AND INVEST MORE 405 00:18:35,080 --> 00:18:36,200 FOCUSSED EFFORTS ON THIS AND 406 00:18:36,200 --> 00:18:39,360 ATTENTION ON THIS SO WE CAN 407 00:18:39,360 --> 00:18:40,840 DEVELOP MORE -- BETTER PLANS 408 00:18:40,840 --> 00:18:42,400 MOVING FORWARD. 409 00:18:42,400 --> 00:18:44,520 AGAIN, THIS WILL BE A WORKING 410 00:18:44,520 --> 00:18:46,360 GROUP THAT WE'LL CONVENE 411 00:18:46,360 --> 00:18:48,880 PROBABLY THE FINAL 412 00:18:48,880 --> 00:18:49,600 RECOMMENDATIONS IN DECEMBER OF 413 00:18:49,600 --> 00:18:50,920 THIS YEAR AND STAY TUNED ON THAT 414 00:18:50,920 --> 00:18:56,840 AND HAPPY TO SAY TOO THAT DAN 415 00:18:56,840 --> 00:19:02,360 TAGLY OUR OFFICE OF SPECIAL 416 00:19:02,360 --> 00:19:05,000 INITIATIVES DIRECTOR WILL BE THE 417 00:19:05,000 --> 00:19:08,600 EX- 418 00:19:08,600 --> 00:19:12,880 EX -OFFICIO MEMBER. 419 00:19:12,880 --> 00:19:14,560 AND ANOTHER NIH EFFORT IS 420 00:19:14,560 --> 00:19:17,640 QUANTUM SENSING AND QUANTUM 421 00:19:17,640 --> 00:19:19,760 INFORMATION SCIENCES AND I 422 00:19:19,760 --> 00:19:28,000 CO-CHAIR THIS WITH SUSAN 423 00:19:28,000 --> 00:19:29,280 GREGURICK AND THE NIMH. 424 00:19:29,280 --> 00:19:30,520 THIS IS A COLLECTIVE GROUP AND 425 00:19:30,520 --> 00:19:33,680 HAS A BROADER NUMBER OF PEOPLE 426 00:19:33,680 --> 00:19:35,960 ACROSS NIH TO PLAY A ROLE IN THE 427 00:19:35,960 --> 00:19:37,560 ACTIVITY TO EXPLORE THE 428 00:19:37,560 --> 00:19:39,480 POTENTIAL OF SOME OF THE QUANTUM 429 00:19:39,480 --> 00:19:39,680 WORK. 430 00:19:39,680 --> 00:19:41,480 THERE WAS A WORKSHOP HELD 431 00:19:41,480 --> 00:19:41,720 RECENTLY. 432 00:19:41,720 --> 00:19:43,160 IT'S NOT QUITE UP ON VIDEOCAST 433 00:19:43,160 --> 00:19:44,840 BUT SHOULD BE SHORTLY. 434 00:19:44,840 --> 00:19:49,000 WHEN THAT HAPPENS I'M HAP -- 435 00:19:49,000 --> 00:19:52,960 REACH OUT AND I'M HAPPY TO SEND 436 00:19:52,960 --> 00:19:53,760 YOU THAT. 437 00:19:53,760 --> 00:19:55,960 A FEW MORE THINGS ON NCATS 438 00:19:55,960 --> 00:19:57,280 SPECIFIC ACTIVITIES I WANTED TO 439 00:19:57,280 --> 00:20:00,360 HIGHLIGHT IS THAT AS A NEW 440 00:20:00,360 --> 00:20:01,600 DIRECT I HAVE THE OPPORTUNITY TO 441 00:20:01,600 --> 00:20:05,640 TAKE A LOOK BACK AT OUR 442 00:20:05,640 --> 00:20:07,080 FOUNDATION, OUR LAST 10 YEARS 443 00:20:07,080 --> 00:20:09,040 AND TAKE A LOOK AT HOW WE CAN 444 00:20:09,040 --> 00:20:11,040 BUILD ON THAT AND MOVE FORWARD 445 00:20:11,040 --> 00:20:12,200 TOGETHER AND SO I'M LOOKING 446 00:20:12,200 --> 00:20:13,680 FORWARD TO BUILDING A STRATEGIC 447 00:20:13,680 --> 00:20:17,640 PLAN FOR THE NEXT 10 YEARS. 448 00:20:17,640 --> 00:20:20,600 WE'RE WORKING ON THAT PROCESS 449 00:20:20,600 --> 00:20:24,520 NOW AND IT WILL ESSENTIALLY BE 450 00:20:24,520 --> 00:20:26,520 AROUND MY AUDACIOUS GOALS I KNOW 451 00:20:26,520 --> 00:20:28,840 YOU HEARD ABOUT BEFORE SO I 452 00:20:28,840 --> 00:20:30,160 WON'T DWELL ON THEM BUT THE IDEA 453 00:20:30,160 --> 00:20:32,440 IS OUR VISION IS TO BRING MORE 454 00:20:32,440 --> 00:20:34,920 TREATMENTS FOR ALL PEOPLE MORE 455 00:20:34,920 --> 00:20:35,600 QUICKLY. 456 00:20:35,600 --> 00:20:38,000 SO WORKING AROUND THOSE THREE 457 00:20:38,000 --> 00:20:40,040 CONCEPTS AND PROBABLY A FEW MORE 458 00:20:40,040 --> 00:20:43,440 AROUND DATA SCIENCE, TRAINING 459 00:20:43,440 --> 00:20:46,360 AND MENTORING AND THINGS OF THAT 460 00:20:46,360 --> 00:20:47,800 NATURE WE WILL INCLUDE THOSE 461 00:20:47,800 --> 00:20:48,640 ACTIVITIES AS WELL BUT RIGHT NOW 462 00:20:48,640 --> 00:20:54,040 WE WANT TO GET ORGANIZED AROUND 463 00:20:54,040 --> 00:20:59,720 THIS AND BUILD A PLAN FOR 464 00:20:59,720 --> 00:21:01,160 STAKEHOLDER AND I THINK IT'S 465 00:21:01,160 --> 00:21:02,280 IMPORTANT TO DO A LOT OF 466 00:21:02,280 --> 00:21:04,080 LISTENING AT THIS STAGE AND 467 00:21:04,080 --> 00:21:06,960 UNDERSTAND WHERE WE CAN FIND 468 00:21:06,960 --> 00:21:08,040 STRENGTHS IN OUR BROAD ECO 469 00:21:08,040 --> 00:21:08,840 SYSTEM OF WHAT WE'RE TRYING TO 470 00:21:08,840 --> 00:21:10,400 DO IN THE SPACE OF BRINGING MORE 471 00:21:10,400 --> 00:21:12,000 TREATMENTS TO ALL PEOPLE MORE 472 00:21:12,000 --> 00:21:12,240 QUICKLY. 473 00:21:12,240 --> 00:21:14,440 PLAY TO THE STRENGTHS AND HOW 474 00:21:14,440 --> 00:21:18,440 CAN WE AT NCATS ENABLE THAT AND 475 00:21:18,440 --> 00:21:20,040 DEVELOP OUR PROGRAMS TO DO JUST 476 00:21:20,040 --> 00:21:20,240 THAT. 477 00:21:20,240 --> 00:21:21,840 WE'RE STARTING THAT NOW. 478 00:21:21,840 --> 00:21:24,760 YOU'LL PROBABLY BE HEARING MORE 479 00:21:24,760 --> 00:21:28,840 ABOUT THAT TOWARDS THE END OF 1 480 00:21:28,840 --> 00:21:30,400 AND START OF Q2 THIS YEAR AND 481 00:21:30,400 --> 00:21:32,440 STAY TUNED FOR ACTIVES AROUND 482 00:21:32,440 --> 00:21:34,800 THIS BECAUSE I -- ACTIVITIES 483 00:21:34,800 --> 00:21:37,640 BECAUSE I KNOW I'LL SEEK YOUR 484 00:21:37,640 --> 00:21:39,840 INPUT AND THIS WILL BE A DEEPER 485 00:21:39,840 --> 00:21:41,520 TOPIC WE'LL TALK ABOUT IN MAY AT 486 00:21:41,520 --> 00:21:42,920 OUR COUNCIL MEETING THERE TOO. 487 00:21:42,920 --> 00:21:45,000 STAY TUNED FOR THAT. 488 00:21:45,000 --> 00:21:46,320 IT'S A BIT OF A TEASER FOR THE 489 00:21:46,320 --> 00:21:49,640 STRATEGIC PLAN PROCESS WE'LL BE 490 00:21:49,640 --> 00:21:56,600 DOING. 491 00:21:56,600 --> 00:21:59,320 AND A SENSE OF THE BUDGET. 492 00:21:59,320 --> 00:22:07,400 LAST TIME WE WERE IN A 493 00:22:07,400 --> 00:22:10,440 CONTINUING RESOLUTION AND NCATS 494 00:22:10,440 --> 00:22:13,360 RECEIVED AN INCREASE OF 3.8% FOR 495 00:22:13,360 --> 00:22:16,400 $23 MILLION MORE AND IN THE NON 496 00:22:16,400 --> 00:22:19,840 CTSA PROGRAM WE RECEIVED 6.6% 497 00:22:19,840 --> 00:22:20,120 INCREASE. 498 00:22:20,120 --> 00:22:26,840 WE'RE PRETTY EXCITED ABOUT THIS. 499 00:22:26,840 --> 00:22:35,520 AND OVER ALL NIH RECEIVED $47.7 500 00:22:35,520 --> 00:22:37,640 MILLION AND WE'RE EXCITED ABOUT 501 00:22:37,640 --> 00:22:41,520 HOW THIS IS TURNING OUT AND HOPE 502 00:22:41,520 --> 00:22:43,480 IT WILL CONTINUE BUT WE'RE LOOK 503 00:22:43,480 --> 00:22:44,880 FORWARD TO ADVANCING MORE 504 00:22:44,880 --> 00:22:45,640 SCIENCE THROUGH THESE 505 00:22:45,640 --> 00:22:51,000 ACTIVITIES. 506 00:22:51,000 --> 00:22:52,160 REALLY GREAT TO SEE THE SUPPORT. 507 00:22:52,160 --> 00:22:55,520 I WANT TO TALK ABOUT A FEW 508 00:22:55,520 --> 00:23:01,560 PROGRAM UPDATES AND START WITH 509 00:23:01,560 --> 00:23:04,840 VIGNETTES ABOUT THE CTSA PROGRAM 510 00:23:04,840 --> 00:23:06,840 AND ABOUT THE FALL CTSA MEETING 511 00:23:06,840 --> 00:23:10,080 WHICH WAS IN-PERSON AFTER A 512 00:23:10,080 --> 00:23:10,920 HIATUS DURING THE PANDEMIC. 513 00:23:10,920 --> 00:23:13,640 WE'RE FINALLY ABLE TO MEET IN 514 00:23:13,640 --> 00:23:15,400 PERSON WHICH IT FELT LIKE IT HAD 515 00:23:15,400 --> 00:23:16,120 BEEN 10 YEARS OR MORE SINCE WE 516 00:23:16,120 --> 00:23:19,600 MET IN PERSON. 517 00:23:19,600 --> 00:23:23,080 IT HADN'T BEEN BUT THE 518 00:23:23,080 --> 00:23:25,120 EXCITEMENT WAS IN THE AIR AND 519 00:23:25,120 --> 00:23:29,640 THIS WAS ONE PARTICULARLY 520 00:23:29,640 --> 00:23:32,280 FOCUSSED ON DIVERSITY, EQUITY, 521 00:23:32,280 --> 00:23:32,880 INCLUSION AND ACCESSIBILITY TO 522 00:23:32,880 --> 00:23:33,640 CARE AND INCREDIBLE DISCUSSIONS 523 00:23:33,640 --> 00:23:37,160 FROM THAT PANELS THAT WERE 524 00:23:37,160 --> 00:23:37,440 PRESENTED. 525 00:23:37,440 --> 00:23:38,680 AND A KEY NOTE ADDRESS WAS GIVEN 526 00:23:38,680 --> 00:23:39,800 AS WELL. 527 00:23:39,800 --> 00:23:41,640 EXCITED TO HAVE THIS GROUP BACK 528 00:23:41,640 --> 00:23:43,720 IN ACTION AND I HOPE THAT WILL 529 00:23:43,720 --> 00:23:46,440 CONTINUE AND THE PANDEMIC WILL 530 00:23:46,440 --> 00:23:52,960 CONTINUE TO HOPEFULLY SUBSIDE. 531 00:23:52,960 --> 00:23:54,840 AND SHORTLY AROUND THE TIME OF 532 00:23:54,840 --> 00:23:56,200 THE FALL MEETING WE'VE THOUGHT 533 00:23:56,200 --> 00:23:57,160 OF HOW TO GET MORE DIRECT 534 00:23:57,160 --> 00:24:00,800 COMMUNICATION WITH THE CTSA 535 00:24:00,800 --> 00:24:01,600 PROGRAM. 536 00:24:01,600 --> 00:24:05,640 SO I PULLED TOGETHER A SERIES OF 537 00:24:05,640 --> 00:24:08,480 ROUNDTABLES, LARGELY STARTING 538 00:24:08,480 --> 00:24:13,320 WITH THE 60 CTSA PIs AND THEIR 539 00:24:13,320 --> 00:24:13,880 EXECUTIVE LEADERSHIP. 540 00:24:13,880 --> 00:24:17,480 THE WHOLE PURPOSE HERE TO COME 541 00:24:17,480 --> 00:24:23,000 TOGETHER IN THIS ROUNDTABLE 542 00:24:23,000 --> 00:24:25,320 FASHION WITH THE CTSA AND 543 00:24:25,320 --> 00:24:28,680 LEADERSHIP IS TO FIND WAYS TO 544 00:24:28,680 --> 00:24:31,040 DISCUSS WAYS TO PROMOTE 545 00:24:31,040 --> 00:24:32,080 COMMUNICATION ACROSS THE 546 00:24:32,080 --> 00:24:33,640 CONSORTIUM AND PROVIDE FEEDBACK 547 00:24:33,640 --> 00:24:34,840 AND REQUEST FOR MORE 548 00:24:34,840 --> 00:24:36,640 OPPORTUNITIES FOR DISCUSSION, 549 00:24:36,640 --> 00:24:36,920 FRANKLY. 550 00:24:36,920 --> 00:24:40,400 AND UNDERSTAND HOW TO MOVE MORE 551 00:24:40,400 --> 00:24:40,720 STRATEGICALLY. 552 00:24:40,720 --> 00:24:43,160 I'M SHOWING A WORD CLOUD. 553 00:24:43,160 --> 00:24:45,520 WE ASKED THE GROUP WHAT WAS THE 554 00:24:45,520 --> 00:24:48,760 MOST IMPORTANT WORK THE CTSA 555 00:24:48,760 --> 00:24:54,560 DOES AND YOU SEE COLLABORATION, 556 00:24:54,560 --> 00:24:59,600 TRAINING, SUPPORT NETWORK, 557 00:24:59,600 --> 00:25:01,200 EDUCATE, INFORMATICS AND GREAT 558 00:25:01,200 --> 00:25:02,480 TO SEE THE WORDS ABOUT 559 00:25:02,480 --> 00:25:03,200 CONNECTION AND PULLING TOGETHER. 560 00:25:03,200 --> 00:25:05,640 I'M LOOKING FORWARD TO 561 00:25:05,640 --> 00:25:08,240 CONTINUING THIS ACTIVITY WITH 562 00:25:08,240 --> 00:25:10,520 DIRECT COMMUNICATION WITH OUR 563 00:25:10,520 --> 00:25:13,400 CTSA PROGRAM AND WORKING SIDE BY 564 00:25:13,400 --> 00:25:16,720 SIDE WITH DR. MIKE CARULA WHICH 565 00:25:16,720 --> 00:25:17,600 LEADS THE PROGRAM AND I THINK IT 566 00:25:17,600 --> 00:25:19,040 WILL BE AN EXCITING TIME AND 567 00:25:19,040 --> 00:25:21,160 HELPFUL FOR UNDERSTANDING HOW WE 568 00:25:21,160 --> 00:25:27,080 CAN ENSURE THE CTSA AND OUR 569 00:25:27,080 --> 00:25:29,120 NCATS STRATEGY PLANNING ARE 570 00:25:29,120 --> 00:25:31,160 WORKING IN TANDEM AND 571 00:25:31,160 --> 00:25:31,840 COMPLEMENTARY TO EACH OTHER. 572 00:25:31,840 --> 00:25:34,040 IT'S AN EXCITING SERIES OF 573 00:25:34,040 --> 00:25:36,000 THINGS WE'LL BE DOING AND WE'LL 574 00:25:36,000 --> 00:25:38,320 CONTINUE THE ROUNDTABLES WITH A 575 00:25:38,320 --> 00:25:39,240 VARIETY OF OTHER GROUPS WITHIN 576 00:25:39,240 --> 00:25:41,000 THE CTSA PROGRAM AND PERHAPS USE 577 00:25:41,000 --> 00:25:41,640 THEM FOR OTHER ACTIVITIES AS 578 00:25:41,640 --> 00:25:50,600 WELL. 579 00:25:50,600 --> 00:25:52,320 AND THIS IS WORK THAT CAME OUT 580 00:25:52,320 --> 00:25:54,680 OF THE RECRUITMENT INNOVATION 581 00:25:54,680 --> 00:25:57,800 CENTER LED BY SARA WILKENS. 582 00:25:57,800 --> 00:26:00,080 WE HEARD A LOT OVER THE PANDEMIC 583 00:26:00,080 --> 00:26:04,000 ABOUT THE ISSUE THAT TRUST IS 584 00:26:04,000 --> 00:26:06,760 REALLY LOW IN BIOMEDICAL 585 00:26:06,760 --> 00:26:10,040 RESEARCH AMONG MINORITIZED 586 00:26:10,040 --> 00:26:13,120 RACIAL AND ETHNIC GROUP UNDER 587 00:26:13,120 --> 00:26:15,040 REPRESENTED IN RESEARCH AND 588 00:26:15,040 --> 00:26:16,400 THESE SAME GROUPS EXPERIENCED 589 00:26:16,400 --> 00:26:17,960 WORSE HEALTH OUTCOMES. 590 00:26:17,960 --> 00:26:19,560 WE NEED TO ADDRESS THIS MORE 591 00:26:19,560 --> 00:26:19,920 DIRECTLY. 592 00:26:19,920 --> 00:26:20,960 THIS GROUP HAS DEVELOPED A SCALE 593 00:26:20,960 --> 00:26:22,640 TO HELP US DO JUST THAT. 594 00:26:22,640 --> 00:26:25,720 THIS IS A NEW INSTRUMENT TO 595 00:26:25,720 --> 00:26:27,320 UNDERSTAND HOW TO THINK ABOUT 596 00:26:27,320 --> 00:26:29,600 TRUST AND DISTRUST WITH SPECIFIC 597 00:26:29,600 --> 00:26:32,200 SCALES THAT ARE WELL VALIDATED 598 00:26:32,200 --> 00:26:33,960 AND DEVELOPED. 599 00:26:33,960 --> 00:26:36,480 SO WE'LL BE ABLE TO USE THIS 600 00:26:36,480 --> 00:26:39,400 KIND OF SCALE IN COMMUNITIES AND 601 00:26:39,400 --> 00:26:40,680 START TO TACKLE AREAS AROUND 602 00:26:40,680 --> 00:26:44,600 TRUST TO START TO ENGAGE ON AND 603 00:26:44,600 --> 00:26:48,240 HOPEFULLY START TO TRANSFORM. 604 00:26:48,240 --> 00:26:50,480 ANOTHER VIGNETTE IS A 605 00:26:50,480 --> 00:26:51,840 COLLABORATION ACROSS THE CTSA 606 00:26:51,840 --> 00:26:57,640 PROGRAM AND THIS STUDY IN 607 00:26:57,640 --> 00:27:08,120 PARTICULAR IS ABOUT CILIARY 608 00:27:13,000 --> 00:27:15,800 DYSKINESIS AND THE ADULTS WITH 609 00:27:15,800 --> 00:27:17,480 THE DISEASE HAD PROBLEMS WITH 610 00:27:17,480 --> 00:27:18,520 REPRODUCTION. 611 00:27:18,520 --> 00:27:20,600 A COLLABORATION HAPPENED WITH 612 00:27:20,600 --> 00:27:26,600 THIS GROUP TO UNDERSTAND THE 613 00:27:26,600 --> 00:27:31,560 MECHANISMS AND LOOK AT POTENTIAL 614 00:27:31,560 --> 00:27:31,880 THERAPEUTIC. 615 00:27:31,880 --> 00:27:35,240 DIS AND GETTING AT THE 616 00:27:35,240 --> 00:27:35,880 TREATMENT APPROACH IS WHAT WE'RE 617 00:27:35,880 --> 00:27:46,120 HOPING TO SEE. 618 00:27:58,640 --> 00:28:04,080 AND WE FOUND OUT THAT THERE IS 619 00:28:04,080 --> 00:28:05,480 ACTUALLY MORE WIDESPREAD ISSUES 620 00:28:05,480 --> 00:28:08,840 AROUND SOIL FUNGI IN OTHER AREAS 621 00:28:08,840 --> 00:28:11,000 OF THE UNITED STATES SO RAISING 622 00:28:11,000 --> 00:28:11,920 AWARENESS AND SHOWING THIS IS 623 00:28:11,920 --> 00:28:18,440 THE CASE FOR A VARIETY OF OTHER 624 00:28:18,440 --> 00:28:25,560 REGIONS ACROSS THE COUNTRY WILL 625 00:28:25,560 --> 00:28:27,360 HELP REDUCE DIAGNOSES FOR PEOPLE 626 00:28:27,360 --> 00:28:31,080 IN THESE AREAS AND WHAT TO LOOK 627 00:28:31,080 --> 00:28:33,480 FOR IN CASES FOR SYMPTOMS THAT 628 00:28:33,480 --> 00:28:35,880 OVERLAP WITH THINGS SEEN WITH 629 00:28:35,880 --> 00:28:39,320 YELLOW FEVER, SORRY, VALLEY 630 00:28:39,320 --> 00:28:39,680 FEVER. 631 00:28:39,680 --> 00:28:40,760 THIS IS AN IMPORTANT PIECE OF 632 00:28:40,760 --> 00:28:42,320 INFORMATION AND WANT TO MAKE 633 00:28:42,320 --> 00:28:44,520 SURE I RAISE THE AWARENESS FOR 634 00:28:44,520 --> 00:28:45,000 THE GROUP. 635 00:28:45,000 --> 00:28:50,600 AND I'M GOING TO CLOSE ON THIS 636 00:28:50,600 --> 00:28:51,680 ONE. 637 00:28:51,680 --> 00:28:56,480 THIS IS A COMMERCIALIZATION OF A 638 00:28:56,480 --> 00:28:56,720 PRODUCT. 639 00:28:56,720 --> 00:29:01,640 THIS IS REALLY HOW THE IDEA OF 640 00:29:01,640 --> 00:29:02,840 SUTURING NEUROSURGERIES IS QUITE 641 00:29:02,840 --> 00:29:03,840 TIME CONSUMING. 642 00:29:03,840 --> 00:29:06,880 THIS GROUP OUT OF OREGON, THE 643 00:29:06,880 --> 00:29:10,280 OREGON CLINICAL AND 644 00:29:10,280 --> 00:29:10,960 TRANSLATIONAL RESEARCH INSTITUTE 645 00:29:10,960 --> 00:29:15,560 CREATED A DEVICE TO ENABLE 646 00:29:15,560 --> 00:29:17,080 SUTURES IN A FRACTION OF THE 647 00:29:17,080 --> 00:29:19,760 TIME THAT TAKES OTHER WISE AND 648 00:29:19,760 --> 00:29:22,280 ANOTHER ANOTHER DEVELOPMENT FOR 649 00:29:22,280 --> 00:29:25,480 ENABLING HEALTH CARE AND 650 00:29:25,480 --> 00:29:26,600 HOPEFULLY REDUCING CONCERNS 651 00:29:26,600 --> 00:29:28,160 AROUND THE LENGTH OF SURGERIES 652 00:29:28,160 --> 00:29:28,920 THAT HAPPEN AS WELL. 653 00:29:28,920 --> 00:29:31,640 THIS IS A GREAT ADVANCEMENT TOO. 654 00:29:31,640 --> 00:29:34,680 AND ACTUALLY I HAD ONE MORE 655 00:29:34,680 --> 00:29:34,960 VIGNETTE. 656 00:29:34,960 --> 00:29:39,880 I WANTED TO GIVE A SHOUT OUT TO 657 00:29:39,880 --> 00:29:44,480 THE SMART IRBs. 658 00:29:44,480 --> 00:29:47,520 NCATS HAS BEEN INVOLVED IN THE 659 00:29:47,520 --> 00:29:48,440 EMERGENCY PREPAREDNESS AND THERE 660 00:29:48,440 --> 00:29:50,520 WAS A WHITE HOUSE OFFICE OF 661 00:29:50,520 --> 00:29:52,000 SCIENCE AND TECHNOLOGY REQUEST 662 00:29:52,000 --> 00:29:55,320 FOR INFORMATION THAT CAME OUT 663 00:29:55,320 --> 00:29:57,640 NOT TOO LONG AGO AND SMART IRB 664 00:29:57,640 --> 00:30:00,320 WAS A WAY MENTIONED IN THINKING 665 00:30:00,320 --> 00:30:01,520 OF ADOPTING FOR EMERGENCY MASTER 666 00:30:01,520 --> 00:30:03,840 AGREEMENT FRAMEWORKS TO REALLY 667 00:30:03,840 --> 00:30:05,640 HIGHLIGHT THE IDEA OF WHERE WE 668 00:30:05,640 --> 00:30:10,080 CAN MOVE MORE QUICKLY WHEN 669 00:30:10,080 --> 00:30:11,160 THERE'S URGENCY THERE. 670 00:30:11,160 --> 00:30:14,000 I WANTED TO SHOW YOU THE SLIDE 671 00:30:14,000 --> 00:30:14,600 BECAUSE THE GRAPHIC IN THE 672 00:30:14,600 --> 00:30:17,040 CENTER SHOWS THE VALUE OF THE 673 00:30:17,040 --> 00:30:17,440 SMART IRB. 674 00:30:17,440 --> 00:30:20,080 THE NUMBER OF SITE APPROVALS 675 00:30:20,080 --> 00:30:23,120 SHOWN IN THE BLUE BOXES AND THE 676 00:30:23,120 --> 00:30:25,320 NUMBER OF -- THE MEDIAN DAYS FOR 677 00:30:25,320 --> 00:30:26,560 TIME TO APPROVAL OF IRB 678 00:30:26,560 --> 00:30:28,040 APPROVALS FOR THE PROJECTS IS 679 00:30:28,040 --> 00:30:28,760 SHOWN IN THE ORANGE LINE. 680 00:30:28,760 --> 00:30:33,520 YOU CAN SEE THE DRAMATIC 681 00:30:33,520 --> 00:30:34,720 DECREASE CUT OVER BY HALF THE 682 00:30:34,720 --> 00:30:37,120 TIME IT TAKES TO DO THE 683 00:30:37,120 --> 00:30:37,400 APPROVALS. 684 00:30:37,400 --> 00:30:39,280 THIS IS AN INCREDIBLE WAY TO 685 00:30:39,280 --> 00:30:41,120 HELP MAKE THINGS GO FASTER AND 686 00:30:41,120 --> 00:30:43,200 SO VERY EXCITING TO SEE THIS 687 00:30:43,200 --> 00:30:46,040 FROM THE SMART IRB AND GET THIS 688 00:30:46,040 --> 00:30:49,680 NATIONAL RECOGNITION OF THE WORK 689 00:30:49,680 --> 00:30:50,760 THEY'VE BEEN DOING. 690 00:30:50,760 --> 00:30:52,720 AND THEN OF COURSE ON A SAD 691 00:30:52,720 --> 00:31:03,160 NOTE, MANY OF YOU KNOW THAT 692 00:31:03,840 --> 00:31:06,880 THERE'VE BEEN MEMBERS THAT 693 00:31:06,880 --> 00:31:07,240 PASSED AWAY. 694 00:31:07,240 --> 00:31:09,600 DR. RAFFLE SACCO FROM UNIVERSITY 695 00:31:09,600 --> 00:31:12,400 OF MIAMI, CTSA, HAS BEEN A 696 00:31:12,400 --> 00:31:15,360 MEMBER OF OUR STEERING COMMITTEE 697 00:31:15,360 --> 00:31:20,080 FOR THE FOR THE PROGRAM AND AND 698 00:31:20,080 --> 00:31:20,760 VALUED MEMBER OF THE COMMUNITY 699 00:31:20,760 --> 00:31:25,400 AND PASSED AWAY RECENTLY. 700 00:31:25,400 --> 00:31:28,000 IN ADDITION, SUSAN SMITH FROM 701 00:31:28,000 --> 00:31:29,480 THE UNIVERSITY OF ARKANSAS 702 00:31:29,480 --> 00:31:33,200 MEDICAL SCHOOL IN TRI, THE 703 00:31:33,200 --> 00:31:38,200 TRANSLATIONAL RESEARCH INSTITUTE 704 00:31:38,200 --> 00:31:45,800 ALSO PASSED AWAY AND SERVED ON 705 00:31:45,800 --> 00:31:46,760 THE STEERING COMMITTEE. 706 00:31:46,760 --> 00:31:49,680 VERY VALUED MEMBERS OF THE CTSA 707 00:31:49,680 --> 00:31:54,880 COMMUNITY. 708 00:31:54,880 --> 00:31:58,400 LASTLY LARRY FROM THE UNIVERSITY 709 00:31:58,400 --> 00:32:02,360 OF KENTUCKY, CCTS. 710 00:32:02,360 --> 00:32:06,240 GERRY SUPINSKI AND SADDENED BY 711 00:32:06,240 --> 00:32:09,000 THE NEWS OF OUR COLLEAGUES AND 712 00:32:09,000 --> 00:32:12,680 FRIENDS ACROSS THE CTSA 713 00:32:12,680 --> 00:32:13,000 CONSORTIUM. 714 00:32:13,000 --> 00:32:15,480 EACH OF THEM WERE TOP-NOTCH 715 00:32:15,480 --> 00:32:16,520 SCIENTISTS, SCHOLARS, 716 00:32:16,520 --> 00:32:19,720 PHYSICIANS, MENTORS AND HUMANS. 717 00:32:19,720 --> 00:32:21,600 SO THEY WILL BE DEEPLY MISSED 718 00:32:21,600 --> 00:32:29,360 WITHIN OUR CTSA COMMUNITY AND 719 00:32:29,360 --> 00:32:30,760 WE'LL CONTINUE TO DO GREAT 720 00:32:30,760 --> 00:32:32,120 THINGS BECAUSE OF THE WORK THEY 721 00:32:32,120 --> 00:32:36,000 HAVE ENABLED AS WELL. 722 00:32:36,000 --> 00:32:39,120 ON ANOTHER NOTE SIMILARLY, LAST 723 00:32:39,120 --> 00:32:41,960 TIME WE SPOKE ABOUT DR. BECKY 724 00:32:41,960 --> 00:32:44,080 JACKSON WHO PASSED AWAY AS WELL. 725 00:32:44,080 --> 00:32:47,200 SHE SERVED ON THIS COUNCIL. 726 00:32:47,200 --> 00:32:50,680 WE ARE REALLY SAD TO SEE -- HEAR 727 00:32:50,680 --> 00:33:01,200 THE NEWS BUT AT THE SAME TIME 728 00:33:02,840 --> 00:33:05,640 AND THERE'S A REBECCA JACKSON 729 00:33:05,640 --> 00:33:06,960 AWARD FOR ACHIEVEMENT IN 730 00:33:06,960 --> 00:33:08,200 EDUCATION AND INNOVATION. 731 00:33:08,200 --> 00:33:12,520 IF YOU'D LIKE TO LEARN MORE SEE 732 00:33:12,520 --> 00:33:13,640 THE LINK SHOWN HERE. 733 00:33:13,640 --> 00:33:16,600 THIS IS GRATIFYING TO SEE AND A 734 00:33:16,600 --> 00:33:17,480 WONDERFUL WAY TO RECOGNIZE HER 735 00:33:17,480 --> 00:33:24,240 CONTRIBUTIONS AND HER SPIRIT. 736 00:33:24,240 --> 00:33:29,760 >>I WANT TO MOVE ON TO THE RARE 737 00:33:29,760 --> 00:33:32,040 DISEASE COMMUNITY AND SPACE. 738 00:33:32,040 --> 00:33:35,400 THERE'S A VARIETY OF ACTIVES 739 00:33:35,400 --> 00:33:36,680 ONGOING IN THE SPACE ALL VERY 740 00:33:36,680 --> 00:33:38,360 EXCITING AND I'M NOT ABLE TO 741 00:33:38,360 --> 00:33:39,360 TOUCH ON ALL OF THEM AS WELL BUT 742 00:33:39,360 --> 00:33:42,560 I WANTED TO REACH OUT AND TALK 743 00:33:42,560 --> 00:33:45,240 ABOUT THE IDEA OF SHORTENING THE 744 00:33:45,240 --> 00:33:48,320 DIAGNOSTIC ODYSSEY. 745 00:33:48,320 --> 00:33:50,520 WE ALL KNOW 10% OF THE 746 00:33:50,520 --> 00:33:51,480 POPULATION HAS A RARE DISEASE 747 00:33:51,480 --> 00:33:53,200 BUT DON'T HAVE A VERY GOOD 748 00:33:53,200 --> 00:33:56,040 ABILITY TO COUNT THEM IN OUR 749 00:33:56,040 --> 00:33:57,400 ELECTRONIC HEALTH RECORD SYSTEM 750 00:33:57,400 --> 00:33:58,760 OR OTHERWISE, FRANKLY. 751 00:33:58,760 --> 00:33:59,960 THERE AREN'T VERY GOOD 752 00:33:59,960 --> 00:34:00,720 DEFINITIONS. 753 00:34:00,720 --> 00:34:04,040 IT MAKES IT HARD FOR PEOPLE TO 754 00:34:04,040 --> 00:34:05,160 DIAGNOSE PEOPLE WITH RARE 755 00:34:05,160 --> 00:34:06,920 DISEASES AND TO DEVELOP 756 00:34:06,920 --> 00:34:07,600 THERAPIES. 757 00:34:07,600 --> 00:34:09,640 THEY'RE LOOKING FOR WAYS TO 758 00:34:09,640 --> 00:34:11,840 SHORTEN THE DIAGNOSTIC ODYSSEY 759 00:34:11,840 --> 00:34:13,320 AND THINK OF HOW TO ENABLE 760 00:34:13,320 --> 00:34:18,160 CLINICIANS OR THE PATIENT WHO'S 761 00:34:18,160 --> 00:34:21,640 SEE THE CLINICIANS TO FIND WAYS 762 00:34:21,640 --> 00:34:23,720 TO ENABLE A DIAGNOSIS FASTER. 763 00:34:23,720 --> 00:34:25,480 I WANTED TO GIVE A SENSE OF WHAT 764 00:34:25,480 --> 00:34:30,760 WE'RE DOING IN THE SPACE. 765 00:34:30,760 --> 00:34:33,440 ONE OF THE PROGRAMS WE HAVE IS 766 00:34:33,440 --> 00:34:35,960 ON SHORTENING THE DIAGNOSTIC 767 00:34:35,960 --> 00:34:40,000 ODYSSEY FROM NCATS FROM THE 768 00:34:40,000 --> 00:34:41,640 DRDRI PROGRAM AND HAVE THREE 769 00:34:41,640 --> 00:34:42,680 ACTIVITIES IN THE SPACE. 770 00:34:42,680 --> 00:34:47,280 ONE LOOKING AT HOW TO USE 771 00:34:47,280 --> 00:34:48,960 ELECTRONIC HEALTH RECORDS TO 772 00:34:48,960 --> 00:34:50,560 IDENTIFY RARE DISEASE PATIENTS 773 00:34:50,560 --> 00:34:52,080 AND DEVELOP ALGORITHMS TO GO 774 00:34:52,080 --> 00:34:54,760 BACK AND TEST AND SEE IF WE CAN 775 00:34:54,760 --> 00:34:55,960 FIND ADDITIONAL RARE DISEASE 776 00:34:55,960 --> 00:34:57,640 PATIENTS WITH THE SIMILAR 777 00:34:57,640 --> 00:34:59,160 SYMPTOMS AND THEN VALIDATE THOSE 778 00:34:59,160 --> 00:35:07,840 S ALGORITHMS AND SEE HOW THEY 779 00:35:07,840 --> 00:35:11,320 WORK AND IMPORTANTLY IF YOU'VE 780 00:35:11,320 --> 00:35:12,640 SEEN ONE ELECTRONIC HEALTH 781 00:35:12,640 --> 00:35:14,080 RECORD IN ONE SYSTEM YOU'VE ONLY 782 00:35:14,080 --> 00:35:14,880 SEEN ONE ELECTRONIC HEALTH 783 00:35:14,880 --> 00:35:15,720 RECORD IN ONE SYSTEM. 784 00:35:15,720 --> 00:35:16,920 AN IMPORTANT THING WE NEED TO DO 785 00:35:16,920 --> 00:35:18,640 IS VALIDATING THIS IN A VARIETY 786 00:35:18,640 --> 00:35:24,680 OF SYSTEMS TO MAKE SURE THOSE 787 00:35:24,680 --> 00:35:25,560 ARLING 788 00:35:28,200 --> 00:35:30,120 ALGORITHMS ARE ROBUST AND IN 789 00:35:30,120 --> 00:35:34,480 ADDITION WE'RE LOOKING AT 790 00:35:34,480 --> 00:35:38,440 A.I./M.L. APPROACHES TO IDENTIFY 791 00:35:38,440 --> 00:35:41,360 DISORDERS AND IDENTIFYING THOSE 792 00:35:41,360 --> 00:35:44,600 AND LASTLY TO THINK ABOUT 793 00:35:44,600 --> 00:35:47,280 ENVIRONMENT PLATFORMS FOR 794 00:35:47,280 --> 00:35:48,640 GENETIC EVALUATION IN UNDER 795 00:35:48,640 --> 00:35:51,760 SERVED COMMUNITIES TO IDENTIFY 796 00:35:51,760 --> 00:35:53,560 PEOPLE WHO HAVE RARE DISEASES 797 00:35:53,560 --> 00:35:56,400 THAT AREN'T DIAGNOSED YET BUT 798 00:35:56,400 --> 00:35:57,640 NEED SEQUENCING TO DO SO AND 799 00:35:57,640 --> 00:35:59,960 THESE ARE AREAS WE'RE HOPING TO 800 00:35:59,960 --> 00:36:00,560 EXPAND. 801 00:36:00,560 --> 00:36:04,000 I'M HOPING IT'S A START IN 802 00:36:04,000 --> 00:36:05,360 TACKLING THE DIAGNOSTIC ODYSSEY. 803 00:36:05,360 --> 00:36:06,600 WE NEED TO DO MORE WORK. 804 00:36:06,600 --> 00:36:10,600 I THINK THIS IS GOING TO BE 805 00:36:10,600 --> 00:36:13,640 POWERFUL IN DECIDING WHAT NEXT 806 00:36:13,640 --> 00:36:24,040 STEPS WILL BE IMPORTANT. 807 00:36:24,320 --> 00:36:29,760 AND I'LL GIVE THE BRIEF OVERVIEW 808 00:36:29,760 --> 00:36:33,640 WITH THE WITH KNOW OVER 80% ARE 809 00:36:33,640 --> 00:36:37,960 SINGLE GENE DISORDERS AND MOST 810 00:36:37,960 --> 00:36:40,480 ARE OFFSET IN EARLY CHILDHOOD. 811 00:36:40,480 --> 00:36:42,360 IF WE KNOW THERE'S SINGLE GENE 812 00:36:42,360 --> 00:36:44,200 DISORDERS IT GIVES A LEG UP ON 813 00:36:44,200 --> 00:36:44,720 POSSIBLE APPROACHES FOR 814 00:36:44,720 --> 00:36:54,880 TREATMENT. 815 00:36:58,640 --> 00:37:09,080 THIS IS LED HERE AT NCATS AND 816 00:37:20,400 --> 00:37:21,400 WE'VE DEVELOPED NOVEL 817 00:37:21,400 --> 00:37:23,760 TECHNOLOGIES AND TESTED THEM IN 818 00:37:23,760 --> 00:37:25,320 ANIMAL MODELS AND LOOKING FOR 819 00:37:25,320 --> 00:37:26,880 SAFETY AND EFFICACY FOR MORE 820 00:37:26,880 --> 00:37:34,520 APPLICATIONS NOW MOVING FORWARD. 821 00:37:34,520 --> 00:37:36,800 THERE'S A NICE TOOL KIT FOR THE 822 00:37:36,800 --> 00:37:38,440 DATA COMING FROM THE GENE 823 00:37:38,440 --> 00:37:39,560 EDITING PROGRAM AND IF YOU'RE 824 00:37:39,560 --> 00:37:43,640 INTERESTED I WANTED TO PUT THE 825 00:37:43,640 --> 00:37:45,320 QR CODE FOR THAT AND IT'S 826 00:37:45,320 --> 00:37:48,520 PUBLISH AND UNPUBLISHED DATA AND 827 00:37:48,520 --> 00:37:50,120 YOU CAN TAKE A LOOK AT THAT. 828 00:37:50,120 --> 00:37:53,640 FOR THE SECOND PHASE OF PROGRAM 829 00:37:53,640 --> 00:37:55,840 WE'RE STILL DOING WORK ON 830 00:37:55,840 --> 00:37:56,640 TECHNOLOGY DEVELOPMENT. 831 00:37:56,640 --> 00:37:58,240 THAT'S ALWAYS IMPORTANT AND 832 00:37:58,240 --> 00:38:00,880 WE'RE NOW TRANSITIONING INTO 833 00:38:00,880 --> 00:38:03,960 PRE-CLINICAL AND IND STUDIES FOR 834 00:38:03,960 --> 00:38:08,120 THE WORK UNDERSTANDING HOW TO 835 00:38:08,120 --> 00:38:12,360 DEVELOP ASSAYS AND HOW TO MOVE 836 00:38:12,360 --> 00:38:13,760 TOWARDS WHAT ARE ACTIVITIES 837 00:38:13,760 --> 00:38:19,280 GOING TO BE NEEDED AND PERFORM 838 00:38:19,280 --> 00:38:22,600 PERFORMING THOSE. 839 00:38:22,600 --> 00:38:23,840 HOPEFULLY WE'LL MOVE INTO 840 00:38:23,840 --> 00:38:24,880 CLINICAL TRIALS AS WE MOVE TO 841 00:38:24,880 --> 00:38:25,840 THE LATER PARTS OF THE NEXT FIVE 842 00:38:25,840 --> 00:38:30,320 YEARS OF THE PROGRAM. 843 00:38:30,320 --> 00:38:34,200 STAY TUNED BUT I WANTED TO LET 844 00:38:34,200 --> 00:38:37,640 YOU KNOW ABOUT THE NEXT PHASE 845 00:38:37,640 --> 00:38:38,280 WE'RE MOVING INTO. 846 00:38:38,280 --> 00:38:40,960 AND THE ACCELERATING MEDICINES 847 00:38:40,960 --> 00:38:45,400 PROGRAM AND THE CONSORTIUM WITH 848 00:38:45,400 --> 00:38:49,360 PJ BROOKS LEADING THE WAY AND QR 849 00:38:49,360 --> 00:38:50,360 CODE IN THE BOTTOM. 850 00:38:50,360 --> 00:38:53,280 THIS IS ABOUT DEVELOPING AND 851 00:38:53,280 --> 00:38:57,800 EXPLORING THE ADENO ASSOCIATED 852 00:38:57,800 --> 00:38:59,560 VECTOR AND THE BIOLOGY. 853 00:38:59,560 --> 00:39:05,240 THERE'S SUB TYPES AND HOW TO WE 854 00:39:05,240 --> 00:39:06,080 MAKE SURE WE'RE GETTING THE 855 00:39:06,080 --> 00:39:07,480 RIGHT VECTOR TO THE RIGHT CELLS 856 00:39:07,480 --> 00:39:12,080 AND DOSE. 857 00:39:12,080 --> 00:39:16,960 THEY'RE ALL KEY QUESTIONS AND 858 00:39:16,960 --> 00:39:18,600 OPTIMIZING THE VECTOR GENERATION 859 00:39:18,600 --> 00:39:22,640 AND GENE EXPRESSION FOR THE 860 00:39:22,640 --> 00:39:28,000 DELIVERY OF THOSE GENES AS 861 00:39:28,000 --> 00:39:30,400 THERAPIES START TO ADVANCE. 862 00:39:30,400 --> 00:39:32,480 AS WE LOOK AT THE RESEARCH AND 863 00:39:32,480 --> 00:39:33,960 DEVELOPMENT PIECE, THERE'S A 864 00:39:33,960 --> 00:39:37,160 REGULATORY SCIENCE PIECE HERE 865 00:39:37,160 --> 00:39:37,440 TOO. 866 00:39:37,440 --> 00:39:42,560 THE IDEA IS IF WE CAN VAEBS THE 867 00:39:42,560 --> 00:39:45,160 VIRAL DEVELOPMENT OF THE VIRAL 868 00:39:45,160 --> 00:39:48,320 CAPSIDS FOR GENE VIRAL DELIVERY 869 00:39:48,320 --> 00:39:49,680 IS SOMETHING IN A REGULATORY 870 00:39:49,680 --> 00:39:50,960 SENSE WE CAN TAKE OFF THE TABLE 871 00:39:50,960 --> 00:39:53,000 BECAUSE THE SAFETY AND EFFICACY 872 00:39:53,000 --> 00:39:56,600 WILL BE FAIRLY WELL KNOWN FOR 873 00:39:56,600 --> 00:39:59,800 THE DELIVERY DEVICES. 874 00:39:59,800 --> 00:40:03,120 THE REGULATORY ASPECTS NEED TO 875 00:40:03,120 --> 00:40:05,000 FOCUS ON THE ACCESS OF THE 876 00:40:05,000 --> 00:40:05,600 DELIVERY. 877 00:40:05,600 --> 00:40:10,280 IT'S WAYS TO STREAMLINE THE 878 00:40:10,280 --> 00:40:12,040 REGULATORY PROCESSES HERE AND 879 00:40:12,040 --> 00:40:12,840 ALLOW WAYS TO MAKE IT AVAILABLE 880 00:40:12,840 --> 00:40:17,240 FOR MORE RESEARCHERS. 881 00:40:17,240 --> 00:40:18,960 THIS IS AN EXCITING PROGRAM AND 882 00:40:18,960 --> 00:40:20,440 WE'RE NOW A YEAR INTO IT AND 883 00:40:20,440 --> 00:40:23,760 HAVE A VARIETY OF PARTNERS FROM 884 00:40:23,760 --> 00:40:25,320 INDUSTRY AND NON-PROFIT INDUSTRY 885 00:40:25,320 --> 00:40:33,600 AND NIH WORKING ON THIS. 886 00:40:33,600 --> 00:40:37,040 WE'RE TESTING THE APPROACHES AND 887 00:40:37,040 --> 00:40:41,600 EXPECT TO HAVE FINAL SELECTION 888 00:40:41,600 --> 00:40:42,680 BY MAY. 889 00:40:42,680 --> 00:40:43,920 HOPEFULLY MAY COUNCIL I CAN GIVE 890 00:40:43,920 --> 00:40:53,640 A DEEPER UPDATE ON THIS. 891 00:40:53,640 --> 00:40:54,840 ONE OTHER IMPORTANT IN RARE 892 00:40:54,840 --> 00:41:01,880 DISEASE IS THE NETWORK, RBCRN. 893 00:41:01,880 --> 00:41:04,400 THIS EMBODIES OUR APPROACH OF 894 00:41:04,400 --> 00:41:05,600 MANY DISEASES AT A TIME. 895 00:41:05,600 --> 00:41:07,720 IT'S IMPORTANT WHEN WE THINK OF 896 00:41:07,720 --> 00:41:09,600 OVER 10,000 RARE DISEASES. 897 00:41:09,600 --> 00:41:11,000 WE CAN'T GO ONE BY ONE. 898 00:41:11,000 --> 00:41:13,320 WE WANT TO THINK OF WAYS TO 899 00:41:13,320 --> 00:41:14,600 LEVERAGE WORK BEING DONE ACROSS 900 00:41:14,600 --> 00:41:18,720 DIFFERENT NETWORKS LOOKING AT 901 00:41:18,720 --> 00:41:22,880 VERY SIMILAR SYMPTOMOLOGY. 902 00:41:22,880 --> 00:41:27,160 THE RDCRN HAVE 20 GRANTS AND 903 00:41:27,160 --> 00:41:28,640 LOOK AT LEAST THREE DIFFERENT 904 00:41:28,640 --> 00:41:29,040 RELATED DISEASES. 905 00:41:29,040 --> 00:41:31,400 THIS IS A WAY IN WHICH WE CAN 906 00:41:31,400 --> 00:41:32,520 HONE IN ON THE MORE THAN ONE 907 00:41:32,520 --> 00:41:33,200 DISEASE AT A TIME. 908 00:41:33,200 --> 00:41:37,280 IN ADDITION, THIS IS ALSO A WAY 909 00:41:37,280 --> 00:41:39,760 TO GO NATIONAL AND EVEN GLOBAL. 910 00:41:39,760 --> 00:41:40,560 IMPORTANTLY, WITH RARE DISEASES 911 00:41:40,560 --> 00:41:50,640 WE WANT TO TRY TO BRING IN AS 912 00:41:50,640 --> 00:41:53,640 MANY PEOPLE WITH RARE DISEASES 913 00:41:53,640 --> 00:41:56,080 AND RECOGNIZING THIS IS NATIONAL 914 00:41:56,080 --> 00:41:57,560 AND INTERNATIONAL IS A KEY 915 00:41:57,560 --> 00:41:59,120 ACTIVITY I WANTED TO HIGHLIGHT. 916 00:41:59,120 --> 00:42:05,520 AND I'M ASSUMER PROUD AND HAPPY 917 00:42:05,520 --> 00:42:10,280 TO SAY WE HAD AN OPPORTUNITY TO 918 00:42:10,280 --> 00:42:14,400 DO A GUEST LOG AND LARRY TABAK 919 00:42:14,400 --> 00:42:18,720 ASKED TO US DO A BLOG ON RARE 920 00:42:18,720 --> 00:42:19,720 PUBLIC HEALTH CHALLENGE AND ALL 921 00:42:19,720 --> 00:42:21,480 ABOUT RARE DISEASES AND SOME KEY 922 00:42:21,480 --> 00:42:25,440 IDEAS I TALKED ABOUT ARE HERE. 923 00:42:25,440 --> 00:42:26,880 LOOKING MORE IN DEPTH TO IDEAS 924 00:42:26,880 --> 00:42:31,240 AND FINDING OUT WHAT WE'RE DOING 925 00:42:31,240 --> 00:42:34,000 YOU CAN CLICK ON THE QR CODE AND 926 00:42:34,000 --> 00:42:39,120 CHECK IT OUT. 927 00:42:39,120 --> 00:42:42,760 THIS IS ONE OF THE CARTOONS 928 00:42:42,760 --> 00:42:45,080 PUBLISHED FROM OUR RARE DISEASE 929 00:42:45,080 --> 00:42:48,560 CHALLENGE THAT RARE DISEASES ARE 930 00:42:48,560 --> 00:42:49,840 NOT RARE. 931 00:42:49,840 --> 00:42:53,280 IT EMBODIES THERE'S MANY RARE 932 00:42:53,280 --> 00:42:54,400 DISEASES AND ALL AMONG US. 933 00:42:54,400 --> 00:42:55,360 OUR COMMUNITIES. 934 00:42:55,360 --> 00:42:57,440 I THOUGHT I WAS A GREAT IMAGE TO 935 00:42:57,440 --> 00:42:58,160 REACH OUT TO THE RARE 936 00:42:58,160 --> 00:43:06,080 COMMUNITIES IN THAT WAY. 937 00:43:06,080 --> 00:43:06,920 AND THIS IS RARE DISEASE DAY. 938 00:43:06,920 --> 00:43:10,600 IT'S A DAY I CIRCLE EVERY YEAR 939 00:43:10,600 --> 00:43:13,120 AND AN EXCITING MEETING AND 940 00:43:13,120 --> 00:43:16,560 BRINGS TOGETHER THE VOICES, 941 00:43:16,560 --> 00:43:19,680 SCIENTISTS, CLINICIANS, FUND , 942 00:43:19,680 --> 00:43:21,640 PATIENTS, PATIENT ADVOCATES AND 943 00:43:21,640 --> 00:43:22,640 LEADERS WITHIN THE RARE DISEASE 944 00:43:22,640 --> 00:43:28,120 COMMUNITY AND I'M SUPER EXCITED 945 00:43:28,120 --> 00:43:38,680 TO HAVE THIS HAPPEN FEBRUARY 28. 946 00:43:45,720 --> 00:43:48,960 AND THERE'LL BE AN OVERVIEW 947 00:43:48,960 --> 00:43:52,360 ABOUT THAT PROGRAM AND I DON'T 948 00:43:52,360 --> 00:43:52,960 KNOW HE'LL TALK ABOUT TISSUE 949 00:43:52,960 --> 00:43:54,480 CHIPS SPECIFICALLY. 950 00:43:54,480 --> 00:43:58,560 I WANTED TO HIGHLIGHT ONE THING 951 00:43:58,560 --> 00:44:00,520 BECAUSE IT'S A MOMENT. 952 00:44:00,520 --> 00:44:02,320 WE'VE DEVELOPED TISSUE CHIPS TO 953 00:44:02,320 --> 00:44:06,880 GO UP INTO SPACE AND THEN TO DO 954 00:44:06,880 --> 00:44:08,880 WORK HERE ON GRAVITY AS WELL. 955 00:44:08,880 --> 00:44:11,280 SO WE HAVE GRAVITY AND 956 00:44:11,280 --> 00:44:12,400 MICROGRAVITY EXPERIMENTS AT THE 957 00:44:12,400 --> 00:44:14,120 SAME TIME AND WE'RE ABLE TO 958 00:44:14,120 --> 00:44:16,760 ANALYZE THE DATA IN PARALLEL. 959 00:44:16,760 --> 00:44:18,600 WE'VE HAD A VARIETY OF LUNCHES 960 00:44:18,600 --> 00:44:20,600 IN THE LAST FEW YEARS AND THE 961 00:44:20,600 --> 00:44:24,120 LAST LAUNCH WITH THIS PROGRAM IS 962 00:44:24,120 --> 00:44:25,400 MARCH 2. 963 00:44:25,400 --> 00:44:26,920 I WANTED TO MARK THE MOMENT 964 00:44:26,920 --> 00:44:33,160 BECAUSE IT'S BEEN AN INNOVATIVE 965 00:44:33,160 --> 00:44:36,240 AND EXCITING PROGRAM AND THANK 966 00:44:36,240 --> 00:44:40,120 THE TEAM FOR THE INCREDIBLE WORK 967 00:44:40,120 --> 00:44:44,480 AND THANK PARTNERS AT NASA FOR 968 00:44:44,480 --> 00:44:44,880 THIS WORK. 969 00:44:44,880 --> 00:44:48,040 I WANTED TO TAKE A MOMENT TO 970 00:44:48,040 --> 00:44:50,160 RECOGNIZE THAT AND OUR 971 00:44:50,160 --> 00:44:53,000 ASTRONAUTS FOR DOING SOME OF THE 972 00:44:53,000 --> 00:44:53,520 WORK. 973 00:44:53,520 --> 00:44:57,600 ARE NOW I'LL TURN TO ENDING ON A 974 00:44:57,600 --> 00:45:03,320 FEW OF OUR NCATS COVID RESPONSE 975 00:45:03,320 --> 00:45:03,720 UPDATES. 976 00:45:03,720 --> 00:45:14,160 AS YOU KNOW, I HOPE WE'RE 977 00:45:16,960 --> 00:45:18,120 ENTERING A PHASE WHERE IT'S 978 00:45:18,120 --> 00:45:21,520 BEGINNING TO PHASE OUT. 979 00:45:21,520 --> 00:45:29,520 IT'S A WILY VIRUS AND WE'RE 980 00:45:29,520 --> 00:45:32,600 SEEING NEW PHASES AND WE'RE 981 00:45:32,600 --> 00:45:34,040 MONITORING THIS THROUGH THE OPEN 982 00:45:34,040 --> 00:45:36,200 DATA PORTAL I WON'T REALLY TALK 983 00:45:36,200 --> 00:45:37,760 ABOUT TODAY BUT IT HELPS US KEEP 984 00:45:37,760 --> 00:45:40,000 TRACK OF WHAT'S HAPPENING IN 985 00:45:40,000 --> 00:45:44,600 TERMS OF THE EVOLUTION OF THE 986 00:45:44,600 --> 00:45:44,800 VIRUS. 987 00:45:44,800 --> 00:45:46,880 I WANTED TO MENTION WORK ON THE 988 00:45:46,880 --> 00:45:48,480 NATIONAL COHORT COLLABORATIVE. 989 00:45:48,480 --> 00:45:54,720 THIS IS A PROGRAM ON BRINGING IN 990 00:45:54,720 --> 00:45:55,440 ELECTRONIC HEALTH RECORDS FROM 991 00:45:55,440 --> 00:45:57,280 COVID AFFECTED INDIVIDUALS. 992 00:45:57,280 --> 00:46:04,800 WE NOW HAVE OVER 17 MILLION 993 00:46:04,800 --> 00:46:09,760 ELECTRONIC HEALTH RECORDS FROM 994 00:46:09,760 --> 00:46:13,240 AND 17 MILLION TOTAL, 7 MILLION 995 00:46:13,240 --> 00:46:15,040 ARE COVID POSITIVE. 996 00:46:15,040 --> 00:46:20,040 AN INCREDIBLE RESOURCE FOR THIS 997 00:46:20,040 --> 00:46:26,120 KIND OF DATA. 998 00:46:26,120 --> 00:46:27,720 THERE'S BILLIONS ROWS OF DATA. 999 00:46:27,720 --> 00:46:31,200 IT'S INCREDIBLE AND MORE AND 1000 00:46:31,200 --> 00:46:33,560 MORE PAPERS ARE COMING OUT AND 1001 00:46:33,560 --> 00:46:37,560 THERE'S AN EXCESS OF VARIETY OF 1002 00:46:37,560 --> 00:46:42,800 PAPERS ON SPECIFIC AREA OF LONG 1003 00:46:42,800 --> 00:46:43,000 COVID. 1004 00:46:43,000 --> 00:46:53,680 IT'S TURNING OUT THAT THEY FOUND 1005 00:46:53,680 --> 00:46:57,240 THE SEVERITY OF SARS COV2 1006 00:46:57,240 --> 00:46:58,520 REINFECTIONS WAS THAT TO THOSE 1007 00:46:58,520 --> 00:47:04,120 OF THE INITIAL INFECTION BUT THE 1008 00:47:04,120 --> 00:47:07,240 NUMBER OF LONG COVID DIAGNOSES 1009 00:47:07,240 --> 00:47:09,440 SHOWED REINFECTION WITH RECENT 1010 00:47:09,440 --> 00:47:09,720 VARIANTS. 1011 00:47:09,720 --> 00:47:13,080 IT'S A CASE IN POINT TO REMAIN 1012 00:47:13,080 --> 00:47:14,640 VIGILANT AROUND ACTIVITIES 1013 00:47:14,640 --> 00:47:17,600 RELATED TO THE VIRUS AND WHEN 1014 00:47:17,600 --> 00:47:19,520 IT'S RAMPANT IN OUR RESPECTIVE 1015 00:47:19,520 --> 00:47:19,800 AREAS. 1016 00:47:19,800 --> 00:47:24,640 TO DATE, THIS WORK HAS SHOWED A 1017 00:47:24,640 --> 00:47:26,600 LOT OF RESEARCH HIGHLIGHTING 1018 00:47:26,600 --> 00:47:28,960 WHAT'S GOING ON IN LONG COVID 1019 00:47:28,960 --> 00:47:31,000 INCLUDING THE PHENOTYPES THAT 1020 00:47:31,000 --> 00:47:32,600 ARE RELATED TO LONG COVID AS 1021 00:47:32,600 --> 00:47:32,800 WELL. 1022 00:47:32,800 --> 00:47:36,320 THERE'S BEEN 13 MANUSCRIPTS 1023 00:47:36,320 --> 00:47:37,400 SUBMITTED IN PROGRESS FROM THE 1024 00:47:37,400 --> 00:47:38,920 GROUP AND A VARIETY OF 1025 00:47:38,920 --> 00:47:39,720 COLLABORATIONS WITH THE RECOVER 1026 00:47:39,720 --> 00:47:42,800 PROGRAM AND ALL OF US RESEARCH 1027 00:47:42,800 --> 00:47:43,040 PROGRAM. 1028 00:47:43,040 --> 00:47:45,080 THIS HAS BEEN HIGHLIGHTED A 1029 00:47:45,080 --> 00:47:46,760 COUPLE TIMES IN THE NIH 1030 00:47:46,760 --> 00:47:47,560 DIRECTOR'S BLOG. 1031 00:47:47,560 --> 00:47:49,240 WE'RE GETTING GOOD ATTENTION IN 1032 00:47:49,240 --> 00:47:50,400 THE NIH DIRECTOR'S BLOG WHICH IS 1033 00:47:50,400 --> 00:47:52,120 GREAT IT SEE. 1034 00:47:52,120 --> 00:47:54,840 THIS IS AN ONGOING PROBLEM AND I 1035 00:47:54,840 --> 00:47:58,840 THINK THE CLINICAL DATA AND 1036 00:47:58,840 --> 00:47:59,440 ELECTRONIC HEALTH RECORD DATA 1037 00:47:59,440 --> 00:48:01,080 AND REAL-WORLD DATA AND EVIDENCE 1038 00:48:01,080 --> 00:48:03,160 ARE NEW TOOLS WE HAVEN'T HAD 1039 00:48:03,160 --> 00:48:04,280 BEFORE AND WE'RE LEARNING HOW TO 1040 00:48:04,280 --> 00:48:07,600 USE THE TOOLS AND IT'S TURNING 1041 00:48:07,600 --> 00:48:08,320 OUT TO BE QUITE POWERFUL. 1042 00:48:08,320 --> 00:48:09,480 I HOPE WE CAN CONTINUE TO DO 1043 00:48:09,480 --> 00:48:13,320 THIS KIND OF ACTIVITY. 1044 00:48:13,320 --> 00:48:17,120 ON THE ACTIVE SIDE ACCELERATING 1045 00:48:17,120 --> 00:48:17,720 COVID-19 INTERVENTIONS AND 1046 00:48:17,720 --> 00:48:21,880 VACCINES, I WANTED TO JUST 1047 00:48:21,880 --> 00:48:32,240 BRIEFLY UPDATE ON THE 1048 00:48:36,520 --> 00:48:38,840 PRIVATE-PUBLIC PARTNERSHIPS AND 1049 00:48:38,840 --> 00:48:41,520 THIS HAS BEEN A WONDERFUL 1050 00:48:41,520 --> 00:48:41,880 PARTNERSHIP. 1051 00:48:41,880 --> 00:48:43,720 I WANT TO HIGHLIGHT ACTIVITIES 1052 00:48:43,720 --> 00:48:44,480 WE'VE BEEN DOING. 1053 00:48:44,480 --> 00:48:46,480 I WON'T GO INTO TOO MUCH DETAIL 1054 00:48:46,480 --> 00:48:49,840 BUT OUR ROLE HAS BEEN FOCUSSED 1055 00:48:49,840 --> 00:48:55,560 ON STAGE 1 AND STAGE 2 SIDE. 1056 00:48:55,560 --> 00:49:00,400 THE OUT PATIENT POPULATION. 1057 00:49:00,400 --> 00:49:07,160 ACTIV FOCUSSED ON THE IN-PATIENT 1058 00:49:07,160 --> 00:49:07,480 POPULATION. 1059 00:49:07,480 --> 00:49:14,160 THERE WERE FINDINGS WHERE THEY 1060 00:49:14,160 --> 00:49:16,920 MISSED THE PRIMARY END POINT BUT 1061 00:49:16,920 --> 00:49:22,480 HAD GOOD SECONDARY END POINT IN 1062 00:49:22,480 --> 00:49:22,880 MORTALITY. 1063 00:49:22,880 --> 00:49:25,640 HOPEFULLY THERE'LL BE A 1064 00:49:25,640 --> 00:49:26,320 PUBLISHING SOON. 1065 00:49:26,320 --> 00:49:28,200 AND I WANT TO TALK ABOUT THE 1066 00:49:28,200 --> 00:49:29,520 OUT-PATIENT SETTING FOR THE 1067 00:49:29,520 --> 00:49:29,960 CLINICAL TRIALS. 1068 00:49:29,960 --> 00:49:34,920 IT'S ALL DECENTRALIZED. 1069 00:49:34,920 --> 00:49:36,160 WE SEND THE MEDICATIONS TO 1070 00:49:36,160 --> 00:49:37,440 PEOPLE'S HOME AND THEY RESPOND 1071 00:49:37,440 --> 00:49:39,440 BY TAKING THOSE MEDICATIONS AND 1072 00:49:39,440 --> 00:49:41,840 PROVIDING A SERIES OF 1073 00:49:41,840 --> 00:49:43,160 QUESTIONNAIRES, ANSWERS A 1074 00:49:43,160 --> 00:49:45,080 VARIETY OF QUESTIONS ABOUT 1075 00:49:45,080 --> 00:49:45,280 THOSE. 1076 00:49:45,280 --> 00:49:50,560 WHAT I WANTED TO BRIEFLY SHOW 1077 00:49:50,560 --> 00:50:01,120 HERE IS THAT THERE'S BEEN FOUR 1078 00:50:01,520 --> 00:50:05,600 ACTIVE AN NONE SHOWED BENEFIT 1079 00:50:05,600 --> 00:50:16,120 FOR COVID-19 AND WE LOOKED AT 1080 00:50:20,080 --> 00:50:30,560 IVERMECTIN AND FLUTICASONE AND 1081 00:50:33,000 --> 00:50:38,600 FLUVOXAMINE AND THE STUDIES ARE 1082 00:50:38,600 --> 00:50:39,400 STILL VERY IMPORTANT TO 1083 00:50:39,400 --> 00:50:49,880 UNDERSTAND AND WE HAVE SOME 1084 00:50:53,920 --> 00:50:57,600 MEDICATIONS SHOWING THIS IN THE 1085 00:50:57,600 --> 00:51:00,640 VACCINES AND ANTIVIRALS. 1086 00:51:00,640 --> 00:51:01,360 MONOCLONAL ANTIBODIES ARE 1087 00:51:01,360 --> 00:51:02,480 NOTHING AT THE MOMENT BUT 1088 00:51:02,480 --> 00:51:04,640 PERHAPS THOSE WILL COME BACK ON 1089 00:51:04,640 --> 00:51:06,720 THE SCENE EVENTUALLY. 1090 00:51:06,720 --> 00:51:08,400 I THINK THAT EVEN THOUGH THESE 1091 00:51:08,400 --> 00:51:09,800 ARE NOT SHOWING BENEFIT THEY'RE 1092 00:51:09,800 --> 00:51:12,000 STILL VERY IMPORTANT TO REALLY 1093 00:51:12,000 --> 00:51:13,120 RELATE TO THE SCIENTIFIC 1094 00:51:13,120 --> 00:51:17,640 COMMUNITY AND TO THE CLINICIANS 1095 00:51:17,640 --> 00:51:18,240 TREATING PATIENTS WITH COVID-19. 1096 00:51:18,240 --> 00:51:20,000 AND ONE MORE ANECDOTE ON ACTIVE 1097 00:51:20,000 --> 00:51:24,080 6, I WANTED TO HIGHLIGHT IS THAT 1098 00:51:24,080 --> 00:51:27,440 THIS DECENTRALIZED APPROACH HAS 1099 00:51:27,440 --> 00:51:28,200 BEEN EXTRAORDINARY POWERFUL IN 1100 00:51:28,200 --> 00:51:30,440 REDUCING THE TIME IT TAKES TO 1101 00:51:30,440 --> 00:51:33,240 MEET ENROLLMENT TARGETS AND ALSO 1102 00:51:33,240 --> 00:51:40,400 GO FROM STUDY ACTIVATION TO 1103 00:51:40,400 --> 00:51:44,600 RELEASING THE PRE PRINT AND THAT 1104 00:51:44,600 --> 00:51:46,680 IS REALLY INCREDIBLE TO SEE AND 1105 00:51:46,680 --> 00:51:48,040 AGAIN I THINK IT SHOWS 1106 00:51:48,040 --> 00:51:49,400 ROBUSTNESS OF THE PROGRAM, THE 1107 00:51:49,400 --> 00:51:53,280 TEAM ON ACTIVE 6 HAS BEEN 1108 00:51:53,280 --> 00:51:58,080 INCREDIBLE OUT OF DCRI AND A 1109 00:51:58,080 --> 00:52:00,280 VARIETY OF GROUPS INVOLVED IN 1110 00:52:00,280 --> 00:52:02,160 RECRUITING AND ENROLLING THE 1111 00:52:02,160 --> 00:52:02,440 PATIENTS. 1112 00:52:02,440 --> 00:52:03,680 THIS IS A BIG NETWORK AND IT'S 1113 00:52:03,680 --> 00:52:04,680 BEEN VERY POSITIVE. 1114 00:52:04,680 --> 00:52:06,000 THE ONE THING I WANTED TO POINT 1115 00:52:06,000 --> 00:52:09,640 OUT TOO ON THIS IS THAT THESE 1116 00:52:09,640 --> 00:52:12,280 PEER-REVIEWED ARTICLES THOUGH 1117 00:52:12,280 --> 00:52:14,600 THEY'RE NOT SHOWING BENEFIT IN 1118 00:52:14,600 --> 00:52:16,680 TERMS OF COVID-19 I THINK THE 1119 00:52:16,680 --> 00:52:20,480 COMMUNITY SEIZE -- SEES BENEFIT 1120 00:52:20,480 --> 00:52:23,440 AND IN JAMA THIS IS THE NUMBER 1121 00:52:23,440 --> 00:52:25,560 ONE ARTICLE IN TERMS OF OUTPUT 1122 00:52:25,560 --> 00:52:25,840 FOR JAMA. 1123 00:52:25,840 --> 00:52:28,600 IT'S FASCINATING TO SEE. 1124 00:52:28,600 --> 00:52:31,760 AND FORBES MAGAZINE QUOTED THIS 1125 00:52:31,760 --> 00:52:33,360 STUDY AND THEY SAID THIS TYPE OF 1126 00:52:33,360 --> 00:52:35,040 STUDY PROVIDE THE MOST ACCURATE 1127 00:52:35,040 --> 00:52:37,520 AND UNBIASSED RESULTS AS NEITHER 1128 00:52:37,520 --> 00:52:42,680 THE PARTICIPANTS NOR THE STUDY 1129 00:52:42,680 --> 00:52:44,960 INVESTIGATORS KNOW WHETHER THE 1130 00:52:44,960 --> 00:52:46,960 PARTICIPANTS RECEIVE PLACEBO OR 1131 00:52:46,960 --> 00:52:48,280 DRUGS AND NEITHER CHOSE WHICH 1132 00:52:48,280 --> 00:52:49,680 ONE TO GET. 1133 00:52:49,680 --> 00:52:52,320 I THOUGHT THIS WAS A VERY -- A 1134 00:52:52,320 --> 00:52:55,720 GOOD REMINDER THESE ARE BLINDED 1135 00:52:55,720 --> 00:52:58,680 STUDIES, RANDOMIZED PLACEBO 1136 00:52:58,680 --> 00:52:59,800 CONTROLLED TRIALS AND THE 1137 00:52:59,800 --> 00:53:01,080 VALIDITY OF THE RESULTS. 1138 00:53:01,080 --> 00:53:05,640 I WANTED TO HIGHLIGHT THAT AND 1139 00:53:05,640 --> 00:53:07,800 CONGRATULATE THEM FOR THE WORK 1140 00:53:07,800 --> 00:53:10,080 THEY'VE DONE IN THE SPACE. 1141 00:53:10,080 --> 00:53:12,320 THAT WAS A WHIRLWIND TOUR OF 1142 00:53:12,320 --> 00:53:13,680 SOME HIGHLIGHTS HAPPENING SINCE 1143 00:53:13,680 --> 00:53:16,000 WE LAST MET. 1144 00:53:16,000 --> 00:53:23,200 AND SO JUST TO SUMMARIZE AGAIN 1145 00:53:23,200 --> 00:53:24,680 HERE I THINK RECOGNIZING THE 1146 00:53:24,680 --> 00:53:27,640 UNUSUAL I THINK LOSS WE'VE HAD 1147 00:53:27,640 --> 00:53:29,480 OF INDIVIDUALS WITHIN OUR 1148 00:53:29,480 --> 00:53:31,840 COMMUNITIES WITH HEAVY HEARTS 1149 00:53:31,840 --> 00:53:34,080 FOR THEM BOTH PERSONALLY AND 1150 00:53:34,080 --> 00:53:34,480 PROFESSIONALLY. 1151 00:53:34,480 --> 00:53:36,120 I WANTED TO TAKE A MOMENT TO 1152 00:53:36,120 --> 00:53:36,480 RECOGNIZE THAT. 1153 00:53:36,480 --> 00:53:37,880 IT'S ABOUT RELATIONSHIPS AND 1154 00:53:37,880 --> 00:53:38,200 ABOUT PEOPLE. 1155 00:53:38,200 --> 00:53:40,880 THIS IS WHAT WE DO. 1156 00:53:40,880 --> 00:53:42,280 SO IT'S REALLY IMPORTANT TO TAKE 1157 00:53:42,280 --> 00:53:44,600 A MOMENT TO RECOGNIZE THAT IN 1158 00:53:44,600 --> 00:53:47,920 OUR COMMUNITY. 1159 00:53:47,920 --> 00:53:50,760 AT THE SAME TIME WE'RE TO STAND 1160 00:53:50,760 --> 00:53:53,360 FIRM ON OUR FOUNDATION. 1161 00:53:53,360 --> 00:53:54,320 HAPPY TO BE IN THE PERMANENT 1162 00:53:54,320 --> 00:53:56,960 ROLE TO LEAD US INTO THE NEXT 1163 00:53:56,960 --> 00:53:58,480 DECADE, MOVE FORWARD IN WAYS I'M 1164 00:53:58,480 --> 00:54:01,000 GOING TO WORK WITH THE COMMUNITY 1165 00:54:01,000 --> 00:54:04,840 ON AND GET BUY-IN AND INPUT AS 1166 00:54:04,840 --> 00:54:08,080 WE CO-DESIGN AND CO-DEVELOP WITH 1167 00:54:08,080 --> 00:54:09,320 THE STRATEGIC PLAN LOOKS LIKE TO 1168 00:54:09,320 --> 00:54:10,680 BE MOST EFFECTIVE AS POSSIBLE. 1169 00:54:10,680 --> 00:54:15,320 I SHARED A VARIETY OF IMPACTFUL 1170 00:54:15,320 --> 00:54:18,480 ADVANCES AND EXCITED ABOUT 1171 00:54:18,480 --> 00:54:20,120 ENGAGEMENT WITH OUR STAKEHOLDERS 1172 00:54:20,120 --> 00:54:22,360 SUCH AS THE CTSA ROUNDTABLES. 1173 00:54:22,360 --> 00:54:23,680 I THINK IT WILL CONTINUE TO LEAD 1174 00:54:23,680 --> 00:54:25,640 TO MORE ADVANCEMENTS I'M EXCITED 1175 00:54:25,640 --> 00:54:26,280 TO SEE. 1176 00:54:26,280 --> 00:54:28,920 I LOOK FORWARD TO CARRYING OUT 1177 00:54:28,920 --> 00:54:32,600 THE DISCUSSIONS FORWARD TO 1178 00:54:32,600 --> 00:54:35,800 CREATE OUR NEXT ITERATION OF THE 1179 00:54:35,800 --> 00:54:38,600 NCATS STRATEGIC PLAN. 1180 00:54:38,600 --> 00:54:39,640 ONWARD WE GO AND THANK YOU FOR 1181 00:54:39,640 --> 00:54:41,680 YOUR ATTENTION AND GUIDANCE AND 1182 00:54:41,680 --> 00:54:43,320 INPUT AND LOOK FORWARD TO ANY 1183 00:54:43,320 --> 00:54:43,920 QUESTIONS OR DISCUSSIONS YOU 1184 00:54:43,920 --> 00:54:54,200 MIGHT HAVE NOW. 1185 00:55:05,120 --> 00:55:05,400 >>THANK YOU. 1186 00:55:05,400 --> 00:55:07,800 THIS WAS AN AMAZING AMOUNT OF 1187 00:55:07,800 --> 00:55:08,560 INFORMATION AND WE'RE GRATEFUL 1188 00:55:08,560 --> 00:55:12,240 FOR THE WORK YOU DO AND PACE 1189 00:55:12,240 --> 00:55:14,360 WITH WHICH YOU DO IT SO THANK 1190 00:55:14,360 --> 00:55:14,520 YOU. 1191 00:55:14,520 --> 00:55:18,520 I HAVE A QUESTION ABOUT THE 1192 00:55:18,520 --> 00:55:19,320 STRATEGIC PLANNING EFFORT AND 1193 00:55:19,320 --> 00:55:20,560 OPPORTUNITIES FOR COMMUNITY 1194 00:55:20,560 --> 00:55:20,880 ENGAGEMENT. 1195 00:55:20,880 --> 00:55:24,000 I'M SURE I KNOW A LOT OF PEOPLE 1196 00:55:24,000 --> 00:55:25,640 ATTEND THE COUNCIL MEETINGS AND 1197 00:55:25,640 --> 00:55:32,600 HAD A MEETING WITH PARTNERS 1198 00:55:32,600 --> 00:55:34,520 YESTERDAY WHO ARE INCREASING 1199 00:55:34,520 --> 00:55:37,200 PLAY PAYING ATTENTION TO THE 1200 00:55:37,200 --> 00:55:38,200 ROLE NCATS WITHIN THE RARE 1201 00:55:38,200 --> 00:55:41,640 DISEASE COMMUNITY. 1202 00:55:41,640 --> 00:55:44,400 I'M WONDERING IF YOU CAN TALK 1203 00:55:44,400 --> 00:55:47,200 ABOUT YOUR PLAN FOR ENGAGEMENT 1204 00:55:47,200 --> 00:55:48,720 TO THE COMMUNITY AND TALK ABOUT 1205 00:55:48,720 --> 00:55:50,280 WHAT THE PAST STRATEGIC PLAN WAS 1206 00:55:50,280 --> 00:55:53,640 AND HOW MILESTONES AND TIME 1207 00:55:53,640 --> 00:55:56,600 LINES WERE ACHIEVED AS YOU WORK 1208 00:55:56,600 --> 00:55:57,960 TO ENGAGE FOLKS AS YOU WANT 1209 00:55:57,960 --> 00:55:59,240 PEOPLE TO BE EDUCATED ON WHAT 1210 00:55:59,240 --> 00:56:01,640 WAS ACHIEVED AND WHAT THE 1211 00:56:01,640 --> 00:56:05,160 HURDLES WERE AND HOW PEOPLE CAN 1212 00:56:05,160 --> 00:56:07,000 COME TO THE TABLE READY TO 1213 00:56:07,000 --> 00:56:08,920 INFORM THAT PLAN GOING FORWARD. 1214 00:56:08,920 --> 00:56:10,360 >>I'LL TACKLE THE FIRST PART 1215 00:56:10,360 --> 00:56:13,600 FIRST. 1216 00:56:13,600 --> 00:56:17,040 IT'S A GREAT QUESTION. 1217 00:56:17,040 --> 00:56:18,760 WE'RE IN THE MIDST OF DEVELOPING 1218 00:56:18,760 --> 00:56:20,040 WHAT THEY'LL LOOK LIKE AND 1219 00:56:20,040 --> 00:56:22,320 THERE'LL BE A SERIES OF IN 1220 00:56:22,320 --> 00:56:24,640 PERSONAL AND EXTERNAL ENGAGEMENT 1221 00:56:24,640 --> 00:56:26,960 BECAUSE IT'S IMPORTANT TO MAKE 1222 00:56:26,960 --> 00:56:32,600 SURE WE TALK WITH OUR INTERNAL 1223 00:56:32,600 --> 00:56:35,520 TEAMS AND THE WE'RE TRYING TO 1224 00:56:35,520 --> 00:56:37,680 FIGURE OUT HOW TO BEST MAP THOSE 1225 00:56:37,680 --> 00:56:42,600 OUT. 1226 00:56:42,600 --> 00:56:45,360 ONE IS TO THINK ABOUT HOW TO 1227 00:56:45,360 --> 00:56:46,200 LOOK AT THE STRATEGIC PLAN AND 1228 00:56:46,200 --> 00:56:49,640 HIGHLIGHT DISCUSSIONS AROUND 1229 00:56:49,640 --> 00:56:52,000 THOSE. 1230 00:56:52,000 --> 00:56:53,520 WE'LL PROBABLY DO A MIXTURE OF 1231 00:56:53,520 --> 00:56:57,080 ALL OF THESE. 1232 00:56:57,080 --> 00:57:01,600 IT WILL PROBABLY A YES AND 1233 00:57:01,600 --> 00:57:07,200 ANOTHER OPTION ABOUT ENGAGING 1234 00:57:07,200 --> 00:57:09,320 COMMUNI 1235 00:57:09,320 --> 00:57:11,760 COMMUNI 1236 00:57:11,760 --> 00:57:15,400 COMMUNITIES I'D LIKE IT REACH 1237 00:57:15,400 --> 00:57:17,280 OUT TO STAKEHOLDER AND 1238 00:57:17,280 --> 00:57:18,720 COMMUNICATE IF THERE'S 1239 00:57:18,720 --> 00:57:19,360 CONVENINGS THEY'RE HOLDING WHERE 1240 00:57:19,360 --> 00:57:24,920 THERE MAY BE AN OPPORTUNITY TO 1241 00:57:24,920 --> 00:57:26,600 TALK WITH COMMUNITIES AND GET 1242 00:57:26,600 --> 00:57:27,840 ADDITIONAL INPUT IN THAT WAY 1243 00:57:27,840 --> 00:57:32,880 THAT WOULD BE VALUABLE. 1244 00:57:32,880 --> 00:57:35,800 A 1245 00:57:35,800 --> 00:57:38,120 AND DOESN'T BURDEN US TO FIND A 1246 00:57:38,120 --> 00:57:39,800 DAY EVERYBODY CAN DO AND RATHER 1247 00:57:39,800 --> 00:57:40,120 COME TO YOU. 1248 00:57:40,120 --> 00:57:45,360 THAT'S PART OF THAT PLAN. 1249 00:57:45,360 --> 00:57:49,520 A THIRD PART OF THAT PLAN IS 1250 00:57:49,520 --> 00:57:58,600 ONCE WE DRAFT UP SOME OF THE 1251 00:57:58,600 --> 00:58:01,080 PLANS WE'D DO A REQUEST FOR 1252 00:58:01,080 --> 00:58:02,840 INFORMATION FOR ANYONE THROUGH 1253 00:58:02,840 --> 00:58:05,760 THE TYPICAL CHANNELS AT NIH. 1254 00:58:05,760 --> 00:58:07,440 THAT'S A WAY TO GET BROAD IMPACT 1255 00:58:07,440 --> 00:58:08,600 AND FEEDBACK ON THE SPECIFICS 1256 00:58:08,600 --> 00:58:11,120 AROUND THE PLANS AND GET INPUT 1257 00:58:11,120 --> 00:58:11,640 FROM THE COMMUNITY. 1258 00:58:11,640 --> 00:58:17,200 THAT'S A THIRD WAY WE CAN DO IT. 1259 00:58:17,200 --> 00:58:18,800 I THINK IT'S A HIGHER LIFT FOR 1260 00:58:18,800 --> 00:58:23,920 MOST TO DO THAT. 1261 00:58:23,920 --> 00:58:34,240 IT'S IMPORTANT TO ME TO AND GET 1262 00:58:34,240 --> 00:58:35,360 PLANS ON WHERE THEY CAN ADD 1263 00:58:35,360 --> 00:58:35,600 VALUE. 1264 00:58:35,600 --> 00:58:39,080 IT'S IMPORTANT TO DO THE 1265 00:58:39,080 --> 00:58:40,280 LISTENING AND UNDERSTAND WE'RE 1266 00:58:40,280 --> 00:58:41,720 ALL PART OF THE ECO SYSTEM AND 1267 00:58:41,720 --> 00:58:44,560 WHERE CAN WE PLAY WITH EACH 1268 00:58:44,560 --> 00:58:46,240 OTHER'S STRENGTHS AND CAPITALIZE 1269 00:58:46,240 --> 00:58:48,520 ON WORK ONGOING AND NOT 1270 00:58:48,520 --> 00:58:50,600 DUPLICATE EFFORTS BUT EXPAND ON 1271 00:58:50,600 --> 00:58:51,960 THEM AND COMPLIMENT THEM. 1272 00:58:51,960 --> 00:58:55,720 MOST IMPORTANTLY, ENABLE THE 1273 00:58:55,720 --> 00:58:57,080 IDEAS AND SO HEARING FROM THE 1274 00:58:57,080 --> 00:58:58,680 COMMUNITY HELPS US KNOW WE'RE ON 1275 00:58:58,680 --> 00:59:01,840 THE RIGHT TRACK OR MAYBE NEED TO 1276 00:59:01,840 --> 00:59:02,520 SHIFT GEARS TO SOMETHING 1277 00:59:02,520 --> 00:59:04,440 DIFFERENT THAT CAN HELP OTHER 1278 00:59:04,440 --> 00:59:04,640 AREAS. 1279 00:59:04,640 --> 00:59:05,320 THOSE ARE THE KINDS OF THINGS 1280 00:59:05,320 --> 00:59:09,000 WE'LL BE LOOKING AT. 1281 00:59:09,000 --> 00:59:15,840 BY NO MEANS IS THIS SORT OF 1282 00:59:15,840 --> 00:59:18,600 CLOSE TO BEING FULLY 1283 00:59:18,600 --> 00:59:18,920 ARTICULATED. 1284 00:59:18,920 --> 00:59:20,160 WE HAVE GOALS WE'D LIKE TO TALK 1285 00:59:20,160 --> 00:59:22,160 ABOUT AND THINK BY TALKING ABOUT 1286 00:59:22,160 --> 00:59:23,680 THE SPECIFIC GOALS, YOU 1287 00:59:23,680 --> 00:59:24,760 MENTIONED METRICS AND HOW DO WE 1288 00:59:24,760 --> 00:59:27,160 KNOW WE'RE ADVANCING ON THOSE? 1289 00:59:27,160 --> 00:59:28,280 WE WANT TO HIGHLIGHT AREAS TO 1290 00:59:28,280 --> 00:59:38,680 GET CONCRETE ABOUT THAT. 1291 00:59:46,880 --> 00:59:48,600 AND IF WE DO FAIL I WANT TO FAIL 1292 00:59:48,600 --> 00:59:53,320 FORWARD SO ULTIMATELY WE CAN GET 1293 00:59:53,320 --> 00:59:53,520 THERE. 1294 00:59:53,520 --> 00:59:55,760 WE CAN ULTIMATELY GET THERE. 1295 00:59:55,760 --> 00:59:58,720 I DON'T WANT TO BE AFRAID OF 1296 00:59:58,720 --> 00:59:59,120 FAILURE. 1297 00:59:59,120 --> 01:00:02,160 I WANT TO PUSH THE ENVELOPE AND 1298 01:00:02,160 --> 01:00:09,640 WORKING WITH THE STAKEHOLDERS 1299 01:00:09,640 --> 01:00:20,160 AND COMMUNITY WILL BE CRITICAL. 1300 01:00:23,640 --> 01:00:28,960 >>I THE THIS NOT HAPPENING WITH 1301 01:00:28,960 --> 01:00:30,960 NCATS BUT WITH OTHER GROUPS IS 1302 01:00:30,960 --> 01:00:32,000 DUPLICATING EFFORT AND THERE 1303 01:00:32,000 --> 01:00:35,600 SHOULD BE A FAIR AMOUNT OF 1304 01:00:35,600 --> 01:00:36,800 CONVENING AND WITH COLLEAGUES 1305 01:00:36,800 --> 01:00:39,640 AND RESEARCH CONSORTIUM WHICH I 1306 01:00:39,640 --> 01:00:42,360 KNOW NIH INTERACTS WITH BUT HAS 1307 01:00:42,360 --> 01:00:42,600 TIE-INS. 1308 01:00:42,600 --> 01:00:46,800 THERE'S SO MANY THINGS AROUND 1309 01:00:46,800 --> 01:00:48,520 THE GLOBE RIGHT NOW I DON'T WANT 1310 01:00:48,520 --> 01:00:52,680 US TO DO ANY ME TOOs IF WE CAN 1311 01:00:52,680 --> 01:00:53,680 AVOID IT BECAUSE THERE'S WORK TO 1312 01:00:53,680 --> 01:00:58,760 BE DONE BUT LOVE THE SUMMARIES. 1313 01:00:58,760 --> 01:00:59,400 AVOID IT BECAUSE THERE'S WORK TO 1314 01:00:59,400 --> 01:01:00,280 BE DONE BUT LOVE THE SUMMARIES. 1315 01:01:00,280 --> 01:01:00,920 AVOID IT BECAUSE THERE'S WORK TO 1316 01:01:00,920 --> 01:01:02,000 BE DONE BUT LOVE THE SUMMARIES. 1317 01:01:02,000 --> 01:01:03,760 RARE DISEASE IS A GREAT PLACE 1318 01:01:03,760 --> 01:01:04,400 FOR NCATS TO BE. 1319 01:01:04,400 --> 01:01:10,440 >>I COULDN'T AGREE MORE. 1320 01:01:10,440 --> 01:01:11,920 A LOT OF WHAT WE DO -- SOME 1321 01:01:11,920 --> 01:01:13,240 PEOPLE ARE CONCERNED SOMETIMES 1322 01:01:13,240 --> 01:01:15,960 WE MAY DUPLICATE EFFORT NOT 1323 01:01:15,960 --> 01:01:17,320 BECAUSE WE'RE ACTUALLY 1324 01:01:17,320 --> 01:01:18,240 DUPLICATING EFFORT BUT TALK 1325 01:01:18,240 --> 01:01:19,720 ABOUT SPECIFIC DISEASES 1326 01:01:19,720 --> 01:01:21,560 SOMETIMES TO MAKE THE POINT THAT 1327 01:01:21,560 --> 01:01:24,200 WE LOOK AT RARE DISEASES AS A 1328 01:01:24,200 --> 01:01:24,480 WHOLE. 1329 01:01:24,480 --> 01:01:27,800 YOU CAN'T DO TRANSLATIONAL 1330 01:01:27,800 --> 01:01:29,120 SCIENCE WITHOUT DOING 1331 01:01:29,120 --> 01:01:29,720 TRANSLATIONAL RESEARCH. 1332 01:01:29,720 --> 01:01:33,240 UNDERSTANDING HOW TO DO RESEARCH 1333 01:01:33,240 --> 01:01:37,000 ON SPECIFIC DISEASES TRYING TO 1334 01:01:37,000 --> 01:01:38,080 UNDERSTAND HOW TO DO THAT FOR 1335 01:01:38,080 --> 01:01:41,480 MORE THAN ONE DISEASE AT A TIME 1336 01:01:41,480 --> 01:01:46,760 HELPS US GET THERE AND TALK 1337 01:01:46,760 --> 01:01:49,560 ABOUT AREAS AND SAY SOME 1338 01:01:49,560 --> 01:01:50,520 DUPLICATION IS GOOD BECAUSE 1339 01:01:50,520 --> 01:01:52,760 THERE'S VALIDATION WITH THAT AND 1340 01:01:52,760 --> 01:01:54,320 WE WANT TO BE SMART ABOUT IT AND 1341 01:01:54,320 --> 01:01:56,640 WE'RE IN A GOOD POSITION TO DO 1342 01:01:56,640 --> 01:02:01,640 THAT AND YOU MAY KNOW PJ BROOKS 1343 01:02:01,640 --> 01:02:03,800 IS SERVING ON THE INTERNATIONAL 1344 01:02:03,800 --> 01:02:05,760 COMMUNITY WE HAVE GOOD PRESENCE 1345 01:02:05,760 --> 01:02:08,160 THERE AND WE'RE PAYING ATTENTION 1346 01:02:08,160 --> 01:02:08,560 TO. 1347 01:02:08,560 --> 01:02:10,040 AS WE MOVE FORWARD THESE ARE 1348 01:02:10,040 --> 01:02:13,160 THINGS WE WANT TO KEEP AT THE 1349 01:02:13,160 --> 01:02:18,880 FOR FRONT TO ENABLE THE WORK WE 1350 01:02:18,880 --> 01:02:20,600 DO TO DO WHAT YOU'RE TALKING 1351 01:02:20,600 --> 01:02:20,800 ABOUT. 1352 01:02:20,800 --> 01:02:26,640 SURGE YO. 1353 01:02:26,640 --> 01:02:36,800 -- SERGIO. 1354 01:02:41,160 --> 01:02:44,400 >>THANK YOU. 1355 01:02:44,400 --> 01:02:46,360 IT'S REMARKABLE THE PROGRESS 1356 01:02:46,360 --> 01:02:46,880 MADE. 1357 01:02:46,880 --> 01:02:50,560 YOU PIQUED MY INTEREST IN 1358 01:02:50,560 --> 01:02:55,760 ENGAGING WITH THE COMMUNITY AND 1359 01:02:55,760 --> 01:03:06,280 LISTENING TO THE COMMUNITIES. 1360 01:03:08,960 --> 01:03:14,320 AND WE HAVE BEEN MOVING IN THE 1361 01:03:14,320 --> 01:03:22,560 SPACE OF WHICH COMMUNITIES ARE 1362 01:03:22,560 --> 01:03:28,680 YOU LISTENING TO AND EVERS ON 1363 01:03:28,680 --> 01:03:37,680 HEALTH EQUITY AS WELL. 1364 01:03:37,680 --> 01:03:43,440 I WANT TO REACH OUT TO THE 1365 01:03:43,440 --> 01:03:45,640 COMMUNITIES THAT CAN BENEFIT 1366 01:03:45,640 --> 01:03:49,720 FROM THE WORK WE DO AND HAVEN'T 1367 01:03:49,720 --> 01:03:59,240 BENEFITTED AS WELL. 1368 01:03:59,240 --> 01:04:03,520 >>I KNOW I'LL BE ABLE TO LEARN 1369 01:04:03,520 --> 01:04:05,640 FROM YOU IN THE SPACE TOO. 1370 01:04:05,640 --> 01:04:07,680 THERE'S BEEN VARIETIES FROM THE 1371 01:04:07,680 --> 01:04:09,200 CTSA PROGRAM TALKING ABOUT IDEAS 1372 01:04:09,200 --> 01:04:13,640 OF DIVERSITY, EQUITY, INCLUSION 1373 01:04:13,640 --> 01:04:15,800 AND ACCESS AND IT'S ABOUT 1374 01:04:15,800 --> 01:04:17,240 LISTENING AND ENGAGING 1375 01:04:17,240 --> 01:04:17,960 COMMUNITIES. 1376 01:04:17,960 --> 01:04:20,320 DO WE NEED TO CONSIDER BEST 1377 01:04:20,320 --> 01:04:23,400 PRACTICES OF ENSURING WE DO THAT 1378 01:04:23,400 --> 01:04:29,600 NOT JUST DIVERSITY, EQUITY, 1379 01:04:29,600 --> 01:04:30,760 INCLUSION AND ACCESSIBILITY BUT 1380 01:04:30,760 --> 01:04:33,400 REACHING OUT TO THEM AND PERHAPS 1381 01:04:33,400 --> 01:04:34,800 BRINGING THEM INTO OUR STAFF FOR 1382 01:04:34,800 --> 01:04:37,640 DOING CLINICAL TRIALS. 1383 01:04:37,640 --> 01:04:40,920 THINGS OF THAT NATURE. 1384 01:04:40,920 --> 01:04:43,000 THIS IS WHY WE NEED THE DIALOGUE 1385 01:04:43,000 --> 01:04:49,120 AND ENGAGEMENT AND LISTENING. 1386 01:04:49,120 --> 01:04:52,200 AND IN TERMS OF THE STRATEGY 1387 01:04:52,200 --> 01:04:55,080 PLANNING PROCESS AND THE 1388 01:04:55,080 --> 01:04:56,240 ENGAGEMENT AND THE ROUNDTABLE 1389 01:04:56,240 --> 01:04:57,640 DISCUSSIONS I MENTIONED, WE'D 1390 01:04:57,640 --> 01:05:00,960 HOPED TO EXPAND -- WE DON'T PLAN 1391 01:05:00,960 --> 01:05:03,880 TO HOPE, WE'LL BE EXPANDING IN 1392 01:05:03,880 --> 01:05:04,440 PROBABLY IN MARCH. 1393 01:05:04,440 --> 01:05:06,960 WE'RE JUGGLING A LOT OF THESE 1394 01:05:06,960 --> 01:05:08,400 HEAVY CALENDAR LOADS HERE BUT 1395 01:05:08,400 --> 01:05:10,160 IT'S IMPORTANT BECAUSE THIS IS 1396 01:05:10,160 --> 01:05:13,640 THE TIME TO REALLY SLOW DOWN AND 1397 01:05:13,640 --> 01:05:15,680 MAKE SURE WE'RE LISTENING AND 1398 01:05:15,680 --> 01:05:19,320 TOUCHING BASE TO BE ON THE RIGHT 1399 01:05:19,320 --> 01:05:20,840 TRACK SO WHEN WE HAVE GONE 1400 01:05:20,840 --> 01:05:21,680 THROUGH THE OTHER SIDE OF THE 1401 01:05:21,680 --> 01:05:23,560 PROCESS WE CAN SPEED UP AND HAVE 1402 01:05:23,560 --> 01:05:24,760 MORE TRUST I HOPE WITH THE 1403 01:05:24,760 --> 01:05:26,280 COMMUNITY TO MOVE FORWARD 1404 01:05:26,280 --> 01:05:30,240 TOGETHER AND CONTINUE TO BUILD 1405 01:05:30,240 --> 01:05:30,960 THOSE TIES. 1406 01:05:30,960 --> 01:05:34,080 THE CTSA ROUNDTABLE STARTED WITH 1407 01:05:34,080 --> 01:05:36,400 THE PRINCIPLE INVESTIGATOR 1408 01:05:36,400 --> 01:05:37,600 LEADERSHIP AND INSTITUTIONAL 1409 01:05:37,600 --> 01:05:40,120 LEADERSHIP BUT AS WE GO FORWARD 1410 01:05:40,120 --> 01:05:40,960 IN THE NEXT ROUNDS OF THE 1411 01:05:40,960 --> 01:05:44,360 ROUNDTABLE DISCUSSIONS WE'LL BE 1412 01:05:44,360 --> 01:05:47,840 REACHING OUT MORE TO OTHER 1413 01:05:47,840 --> 01:05:53,280 ASPECTS OF THE CTSA AND A CHANCE 1414 01:05:53,280 --> 01:05:54,160 TO TALK TO THE ADMINISTRATORS 1415 01:05:54,160 --> 01:05:58,680 AND THEY'LL BE ON THE LIST AND 1416 01:05:58,680 --> 01:05:59,520 TRAINING DIRECTORS WILL BE ON 1417 01:05:59,520 --> 01:06:00,800 THE LIST AND COMMUNITY 1418 01:06:00,800 --> 01:06:01,560 ENGAGEMENT FOLKS WILL BE ON THE 1419 01:06:01,560 --> 01:06:01,840 LIST. 1420 01:06:01,840 --> 01:06:03,600 THAT'S ONE WAY IN WHICH WE CAN 1421 01:06:03,600 --> 01:06:04,080 DO THAT. 1422 01:06:04,080 --> 01:06:06,400 I'D BE HAPPY IF YOU HAVE ANY 1423 01:06:06,400 --> 01:06:08,600 OTHER THOUGHTS ON THIS SERGIO, 1424 01:06:08,600 --> 01:06:13,600 ALWAYS HAPPY TO HEAR HOW WE CAN 1425 01:06:13,600 --> 01:06:24,120 EVEN DO MORE AND EXPAND THEM. 1426 01:06:50,240 --> 01:06:52,240 >>ARE YOU THINKING ABOUT 1427 01:06:52,240 --> 01:06:53,640 LISTENING SESSION WITH MEMBERS 1428 01:06:53,640 --> 01:06:58,840 FROM MAYBE THE CTSA -- MOST HAVE 1429 01:06:58,840 --> 01:07:01,320 A COMMUNITY ADVISORY BOARDS THAT 1430 01:07:01,320 --> 01:07:02,120 ARE GOOD EXTENSION TO THE 1431 01:07:02,120 --> 01:07:02,320 PUBLIC. 1432 01:07:02,320 --> 01:07:09,360 >>GREAT QUESTION. 1433 01:07:09,360 --> 01:07:11,480 I DON'T QUITE KNOW YET HOW TO DO 1434 01:07:11,480 --> 01:07:14,400 THAT AND WOULD LOVE TO FIGURE 1435 01:07:14,400 --> 01:07:17,360 OUT HOW TO ACCESS THAT IN A WAY 1436 01:07:17,360 --> 01:07:20,600 THAT'S UNIFIED OR DO A 1437 01:07:20,600 --> 01:07:23,560 ROUNDTABLE WE JUST INVITE THE 1438 01:07:23,560 --> 01:07:24,960 CABS TO THE TABLE ON A COUPLE 1439 01:07:24,960 --> 01:07:29,640 DATES WE CAN PICK TO ALLOW IF 1440 01:07:29,640 --> 01:07:32,640 THE CAN'T MAKE ONE DAY PERHAPS 1441 01:07:32,640 --> 01:07:33,080 ANOTHER. 1442 01:07:33,080 --> 01:07:34,920 UNDERSTANDING HOW TO PIGGYBACK 1443 01:07:34,920 --> 01:07:37,600 ON EXISTING MEETINGS IS ONE WAY 1444 01:07:37,600 --> 01:07:39,120 AND ALSO THINKING ABOUT WHAT'S 1445 01:07:39,120 --> 01:07:40,280 THE COMPLETE LIST WE WANT TO 1446 01:07:40,280 --> 01:07:43,120 MAKE SURE WE REACH OUT TO THAT 1447 01:07:43,120 --> 01:07:46,200 MAY NOT HAVE SPECIFIC CONVENINGS 1448 01:07:46,200 --> 01:07:48,400 BUT WANT TO TAP INTO. 1449 01:07:48,400 --> 01:07:49,800 GREAT QUESTION PAUL AND IF YOU 1450 01:07:49,800 --> 01:07:52,680 HAVE THOUGHTS HOW BEST TO DO 1451 01:07:52,680 --> 01:07:55,120 THAT, I'D LOVE TO HEAR IT AND 1452 01:07:55,120 --> 01:07:56,640 MAYBE WE CAN TALK FURTHER ON 1453 01:07:56,640 --> 01:08:06,720 THAT. 1454 01:08:45,920 --> 01:08:56,400 AND PROBABLY IN MAY WE'LL GIVE 1455 01:08:58,200 --> 01:09:00,280 UPDATES AND WOULD LOVE YOUR 1456 01:09:00,280 --> 01:09:01,640 PARTICIPATION IN THOSE WHEN THEY 1457 01:09:01,640 --> 01:09:11,920 DO COME YOUR WAY. 1458 01:09:16,320 --> 01:09:20,800 IF THERE'S NO OTHER QUESTIONS, 1459 01:09:20,800 --> 01:09:22,360 ANNA, HOW WILL WE DOING ON TIME. 1460 01:09:22,360 --> 01:09:24,560 >>WE'RE SLIGHTLY AHEAD OF 1461 01:09:24,560 --> 01:09:26,120 SCHEDULE SO IF CHRISTINE IS 1462 01:09:26,120 --> 01:09:30,000 READY TO GO, WE CAN MOVE HER 1463 01:09:30,000 --> 01:09:31,560 CONCEPT CLEARANCE UP BY A LITTLE 1464 01:09:31,560 --> 01:09:31,720 BIT. 1465 01:09:31,720 --> 01:09:32,400 >>I'M HERE AND READY TO GO. 1466 01:09:32,400 --> 01:09:42,680 >>ALL RIGHT. 1467 01:09:47,920 --> 01:09:49,680 >>I'LL GIVE A BRIEF 1468 01:09:49,680 --> 01:09:50,640 INTRODUCTION BEFORE I INTRODUCE 1469 01:09:50,640 --> 01:09:52,400 THE OFFICE I WANTED TO INTRODUCE 1470 01:09:52,400 --> 01:10:01,240 A NEW STAFF MEMBER IN THE 1471 01:10:01,240 --> 01:10:11,800 PARTNERSHIP PROGRAM SHE WENT ON 1472 01:10:13,800 --> 01:10:20,280 TO DO A POST DOCK IN HARVARD IN 1473 01:10:20,280 --> 01:10:20,640 D 1474 01:10:20,640 --> 01:10:22,840 GENETICS AND COMPLEX DISEASE. 1475 01:10:22,840 --> 01:10:26,600 SHE SPENT TIME AT REGENERON 1476 01:10:26,600 --> 01:10:30,800 MANAGING A TEAM ON TARGET 1477 01:10:30,800 --> 01:10:36,600 DISCOVERY AND PHARMACOLOGY FOR 1478 01:10:36,600 --> 01:10:38,520 OBESITY AND PRE-DIABETES AND HAD 1479 01:10:38,520 --> 01:10:42,360 BEEN A DIRECTOR FOR A KOREAN 1480 01:10:42,360 --> 01:10:44,360 COMPANY FOR PLANNING FOR NEW 1481 01:10:44,360 --> 01:10:45,040 BUSINESS DEVELOPMENT BEFORE SHE 1482 01:10:45,040 --> 01:10:46,560 JOINED US IN THE OFFICE OF 1483 01:10:46,560 --> 01:10:49,680 DIRECT DEVELOPMENT PARTNERSHIP 1484 01:10:49,680 --> 01:10:59,960 PROGRAMS AT NCATS. 1485 01:11:03,800 --> 01:11:05,600 >>AND I LOOK FORWARD TO WORKING 1486 01:11:05,600 --> 01:11:15,800 WITH YOU. 1487 01:11:16,400 --> 01:11:20,240 SO OKAY, LET'S GO ON TO THE 1488 01:11:20,240 --> 01:11:20,920 FIRST SLIDE FOR INTRODUCTION 1489 01:11:20,920 --> 01:11:29,400 HERE. 1490 01:11:29,400 --> 01:11:31,880 WE DEVELOP PARTNERSHIPS THAT 1491 01:11:31,880 --> 01:11:33,440 PROMOTE INNOVATION AND FOCUSSED 1492 01:11:33,440 --> 01:11:36,920 ON FILLING GAPS IN PRE-CLINICAL 1493 01:11:36,920 --> 01:11:38,840 TRANSLATIONAL SCIENCE FROM EARLY 1494 01:11:38,840 --> 01:11:42,000 DISCOVERY THROUGH EARLY STAGE 1495 01:11:42,000 --> 01:11:42,920 CLINICAL TRIALS. 1496 01:11:42,920 --> 01:11:45,480 AND REALLY HAVE AN EYE TOWARD 1497 01:11:45,480 --> 01:11:46,480 DEVELOPING TECHNOLOGIES AND 1498 01:11:46,480 --> 01:11:49,040 STRATEGY ARE GOING TO IMPROVE 1499 01:11:49,040 --> 01:11:52,160 DIVERSITY, EQUITY INCLUSION AND 1500 01:11:52,160 --> 01:11:57,040 ACCESS IN HEALTH CARE. 1501 01:11:57,040 --> 01:12:01,080 ON THE NEXT SLIDE THESE ARE THE 1502 01:12:01,080 --> 01:12:06,560 ONGOING PROGRAMS WE HAVE RUNNING 1503 01:12:06,560 --> 01:12:08,640 NOW IN THE OFFICE AND THINGS IN 1504 01:12:08,640 --> 01:12:12,560 GRAY ARE WHERE FINANCIAL SUPPORT 1505 01:12:12,560 --> 01:12:15,040 IS COMING FROM OFFICE OF THE 1506 01:12:15,040 --> 01:12:19,120 DIRECTORS AND DIRECTING THE 1507 01:12:19,120 --> 01:12:22,760 GENOME PROGRAM AND IT'S AN NIH 1508 01:12:22,760 --> 01:12:26,360 COMMON FUND PROGRAM AND ENDING 1509 01:12:26,360 --> 01:12:28,040 ADDICTION LONG-TERM IS THE LARGE 1510 01:12:28,040 --> 01:12:28,920 INITIATIVE IN RESPONSE TO THE 1511 01:12:28,920 --> 01:12:30,920 OPIOID CRISIS. 1512 01:12:30,920 --> 01:12:32,640 EVERYTHING LISTED IN PURPLE ARE 1513 01:12:32,640 --> 01:12:37,520 INITIATED AND GENERALLY FUNDED 1514 01:12:37,520 --> 01:12:38,800 BY NCATS. 1515 01:12:38,800 --> 01:12:42,200 NOW ON THE NEXT SLIDE WE WILL 1516 01:12:42,200 --> 01:12:46,440 GET INTO THE ACTUAL CONCEPT 1517 01:12:46,440 --> 01:12:49,880 WE'RE CALLING PRE CLINICAL 1518 01:12:49,880 --> 01:12:51,640 CONCEPT STUDIES FOR RARE 1519 01:12:51,640 --> 01:12:52,520 DISEASES. 1520 01:12:52,520 --> 01:12:54,360 LOOKING AT THE SAME DRUG 1521 01:12:54,360 --> 01:12:56,040 DEVELOPMENT PIPELINE, WE WANTED 1522 01:12:56,040 --> 01:12:59,200 TO BREAK DOWN A LITTLE BIT 1523 01:12:59,200 --> 01:13:03,600 FURTHER FOR YOU THE PRECLINICAL 1524 01:13:03,600 --> 01:13:08,600 DEVELOPMENT CHEVRON INTO TWO 1525 01:13:08,600 --> 01:13:08,840 STAGES. 1526 01:13:08,840 --> 01:13:11,880 ONE BEING PRECLINICAL PROOF OF 1527 01:13:11,880 --> 01:13:15,560 CONCEPT AND THE IND-ENABLING 1528 01:13:15,560 --> 01:13:16,600 DEVELOPMENT AND THE 1529 01:13:16,600 --> 01:13:19,280 DEMONSTRATION OF EFFICACY IN A 1530 01:13:19,280 --> 01:13:21,840 MODEL SYSTEM BEFORE YOU WOULD 1531 01:13:21,840 --> 01:13:23,800 MAKE A LARGE INVESTMENT FOR 1532 01:13:23,800 --> 01:13:25,400 DOING THE REGULATORY SAFETY 1533 01:13:25,400 --> 01:13:27,240 STUDIES YOU'RE GOING TO NEED 1534 01:13:27,240 --> 01:13:28,440 BEFORE YOU WOULD ACTUALLY GO 1535 01:13:28,440 --> 01:13:34,840 INTO A HUMAN STUDY AND CLINICAL 1536 01:13:34,840 --> 01:13:36,440 TRIAL. 1537 01:13:36,440 --> 01:13:38,680 THE NEXT SLIDE ILLUSTRATES THE 1538 01:13:38,680 --> 01:13:40,760 GAP THAT WE'RE TRYING TO 1539 01:13:40,760 --> 01:13:41,080 ADDRESS. 1540 01:13:41,080 --> 01:13:46,680 SO PARTICULARLY WHEN WE SPOKE 1541 01:13:46,680 --> 01:13:49,720 WITH OUR INTRAMURAL COLLEAGUES 1542 01:13:49,720 --> 01:13:51,720 AND STEVE PITTINGER THAT DOES A 1543 01:13:51,720 --> 01:13:55,880 LOT OF WORK WITH THEM NOTICED 1544 01:13:55,880 --> 01:13:59,040 THERE WAS A GAP BETWEEN PERHAPS 1545 01:13:59,040 --> 01:14:01,560 IN THE EARLY DISCOVERY AND EARLY 1546 01:14:01,560 --> 01:14:02,720 PRE-CLINICAL DEVELOPMENT WHERE A 1547 01:14:02,720 --> 01:14:05,480 LOT OF TIMES AN INVESTIGATOR OR 1548 01:14:05,480 --> 01:14:07,280 COLLABORATOR MAY BE FOCUSSED ON 1549 01:14:07,280 --> 01:14:12,640 DEVELOP A PROBE TO DO FURTHER 1550 01:14:12,640 --> 01:14:14,480 RESEARCH AND THEN IN THE TEAL 1551 01:14:14,480 --> 01:14:17,000 COLOR WE HAVE THE STUDIES BY THE 1552 01:14:17,000 --> 01:14:22,160 THERAPEUTICS DEVELOPMENT BRANCH. 1553 01:14:22,160 --> 01:14:27,480 THIS AND THIS TENDS TO BE NO 1554 01:14:27,480 --> 01:14:29,760 MATTER WHERE YOU ARE AND SEE IT 1555 01:14:29,760 --> 01:14:31,320 IN THE EXTRAMURAL PROGRAM BUT I 1556 01:14:31,320 --> 01:14:33,600 THINK IF YOU WENT THROUGH 1557 01:14:33,600 --> 01:14:35,400 ACADEMIC INSTITUTIONS YOU'D SEE 1558 01:14:35,400 --> 01:14:36,720 THE SAME AND THE GROUPS THAT DO 1559 01:14:36,720 --> 01:14:38,640 THE ENABLING WORK IS A DIFFERENT 1560 01:14:38,640 --> 01:14:44,280 SKILL SET AND FOCUS. 1561 01:14:44,280 --> 01:14:47,080 WHEN YOU GET SOMEBODY TO THE 1562 01:14:47,080 --> 01:14:48,720 POINT WHERE THEY HAVE A PROBE 1563 01:14:48,720 --> 01:14:50,320 THAT COULD CONTINUE ON FOR 1564 01:14:50,320 --> 01:14:55,880 DEVELOPMENT YOU NEED TO STUDY 1565 01:14:55,880 --> 01:15:02,120 THIS IN SOME MODEL SYSTEM AND 1566 01:15:02,120 --> 01:15:08,160 THIS COULD BE QUITE COSTLY. 1567 01:15:08,160 --> 01:15:09,840 WE WANTED TO HAVE A FUNDING 1568 01:15:09,840 --> 01:15:10,440 OPPORTUNITY THAT WOULD HELP TO 1569 01:15:10,440 --> 01:15:19,120 ADDRESS THIS. 1570 01:15:19,120 --> 01:15:20,480 THE GOAL OF THE OPPORTUNITY IS 1571 01:15:20,480 --> 01:15:24,960 TO BRIDGE THE GAP BETWEEN THE 1572 01:15:24,960 --> 01:15:28,320 DEVELOPMENT AND IND ENABLING 1573 01:15:28,320 --> 01:15:33,600 STUDIES WHEN HAVE YOU A 1574 01:15:33,600 --> 01:15:37,600 MERITORIOUS COMPOUND AND WE'RE 1575 01:15:37,600 --> 01:15:38,440 FOCUSED ON RARE DISEASES AND 1576 01:15:38,440 --> 01:15:40,080 THAT'S THE MOST EFFECTIVE PATH 1577 01:15:40,080 --> 01:15:41,080 FOR GETTING TREATMENT TO PATIENT 1578 01:15:41,080 --> 01:15:42,240 SO WE'D ALSO WANT TO SUPPORT 1579 01:15:42,240 --> 01:15:48,400 THAT AND OFTEN WANT TO SEE 1580 01:15:48,400 --> 01:15:50,920 EFFICACY IN MODELS BEFORE WE GO 1581 01:15:50,920 --> 01:16:01,040 INTO CLINICAL TRIAL. 1582 01:16:01,040 --> 01:16:06,480 THE CONCEPTS FOCUSES ON THE 1583 01:16:06,480 --> 01:16:06,680 IDEA. 1584 01:16:06,680 --> 01:16:11,160 IT'S SIMPLE. 1585 01:16:11,160 --> 01:16:13,600 THIS IS TO USE AN ESTABLISHED 1586 01:16:13,600 --> 01:16:15,400 RARE DISEASE MODEL WHETHER 1587 01:16:15,400 --> 01:16:17,080 ANIMAL MODEL OR TISSUE CHIP OR 1588 01:16:17,080 --> 01:16:19,160 SOME OTHER TYPE OF MODEL TO DO 1589 01:16:19,160 --> 01:16:20,680 THAT TESTING AND DEMONSTRATE THE 1590 01:16:20,680 --> 01:16:26,320 ADVOCACY. 1591 01:16:26,320 --> 01:16:28,320 ON THE NEXT SLIDE WE WANT TO 1592 01:16:28,320 --> 01:16:31,240 DEVELOP AN OPPORTUNITY THAT 1593 01:16:31,240 --> 01:16:32,680 FILLS THE GAP FOR RARE DISEASE 1594 01:16:32,680 --> 01:16:34,240 DRUG DEVELOPMENT BY SPECIFICALLY 1595 01:16:34,240 --> 01:16:37,240 PROVIDING FUNDING TO TEST 1596 01:16:37,240 --> 01:16:39,280 EFFICACY IN MERITORIOUS 1597 01:16:39,280 --> 01:16:41,640 COMPOUNDS IN AN ESTABLISHED RARE 1598 01:16:41,640 --> 01:16:47,200 DISEASE MODEL. 1599 01:16:47,200 --> 01:16:50,160 IN ADDITION WE WANT A STEERING 1600 01:16:50,160 --> 01:16:50,440 COMMITTEE. 1601 01:16:50,440 --> 01:16:56,160 WE WANT TO STRENGTHEN POTENTIAL 1602 01:16:56,160 --> 01:16:58,080 APPLICATIONS BY BRINGING THAT 1603 01:16:58,080 --> 01:16:59,440 PATIENT PERSPECTIVE INTO THE 1604 01:16:59,440 --> 01:17:01,200 PROCESS EARLIER THAN PEOPLE ARE 1605 01:17:01,200 --> 01:17:02,680 TYPICALLY THINKING ABOUT IT AND 1606 01:17:02,680 --> 01:17:04,320 MAY THINK ABOUT WHEN DESIGNING 1607 01:17:04,320 --> 01:17:05,240 THE CLINICAL TRIAL. 1608 01:17:05,240 --> 01:17:06,360 A LOT OF TIMES THEY'RE NOT 1609 01:17:06,360 --> 01:17:07,120 THINKING ABOUT IT AT THE EARLIER 1610 01:17:07,120 --> 01:17:17,240 STAGES. 1611 01:17:20,880 --> 01:17:22,880 WE'RE HOPING IN DOING THIS AND I 1612 01:17:22,880 --> 01:17:24,160 MENTION THE EARLY DISCOVERY 1613 01:17:24,160 --> 01:17:29,400 RESEARCHERS THOSE GENERALLY 1614 01:17:29,400 --> 01:17:34,160 FOCUSSED ON DEVELOP IING A PROB 1615 01:17:34,160 --> 01:17:36,200 WORKING ADJACENT TO DRUG 1616 01:17:36,200 --> 01:17:37,320 DEVELOPMENT AND MAYBE IT'S NOT 1617 01:17:37,320 --> 01:17:40,120 REALLY ON THEIR RADAR THAT THERE 1618 01:17:40,120 --> 01:17:45,240 IS THIS POTENTIAL TO KEEP GOING 1619 01:17:45,240 --> 01:17:46,760 FORWARD AND HAVE THE POTENTIAL 1620 01:17:46,760 --> 01:17:47,760 TO TRANSLATE WHAT THEY'RE DOING 1621 01:17:47,760 --> 01:17:49,680 INTO SOMETHING THAT WOULD HAVE 1622 01:17:49,680 --> 01:17:53,440 AN IMPACT IN THE CLINIC. 1623 01:17:53,440 --> 01:17:56,320 WE HOPE BY HAVING THE 1624 01:17:56,320 --> 01:17:57,040 OPPORTUNITY LIKE THIS IT WILL 1625 01:17:57,040 --> 01:17:59,000 MAKE SOME RESEARCHERS THINK 1626 01:17:59,000 --> 01:18:00,720 ABOUT THE POTENTIAL AND WORK 1627 01:18:00,720 --> 01:18:02,680 MORE INTENTIONALLY TOWARDS 1628 01:18:02,680 --> 01:18:04,840 TRANSLATING THE WORK THEY'RE 1629 01:18:04,840 --> 01:18:05,680 DOING AND THE COMPOUND THEY'RE 1630 01:18:05,680 --> 01:18:15,920 DEVELOPING. 1631 01:18:23,840 --> 01:18:26,640 AND WE THINK THIS RARE DISEASE 1632 01:18:26,640 --> 01:18:28,680 IS A VERY NCATS THING AND 1633 01:18:28,680 --> 01:18:33,400 ENGAGING THEM EARLY ON IN THE 1634 01:18:33,400 --> 01:18:34,600 DEVELOPMENT PROCESS. 1635 01:18:34,600 --> 01:18:39,240 IT FITS WELL WITH THE WAY NCATS 1636 01:18:39,240 --> 01:18:41,360 LIKES TO OPERATE AND INCREASING 1637 01:18:41,360 --> 01:18:43,400 THE USE OF EXISTING RARE DISEASE 1638 01:18:43,400 --> 01:18:48,880 MODELS ON WHICH THE MERITORIOUS 1639 01:18:48,880 --> 01:18:50,360 PROBES AND THERAPEUTICS WILL BE 1640 01:18:50,360 --> 01:18:51,760 TESTED AND TO THINK MORE 1641 01:18:51,760 --> 01:18:53,080 INTENTIONALLY IN DESIGNING 1642 01:18:53,080 --> 01:18:56,200 STUDIES TO WITH STAND CRITICAL 1643 01:18:56,200 --> 01:18:57,480 EVALUATION BY INDUSTRY AND HAVE 1644 01:18:57,480 --> 01:19:03,040 MORE RELEVANCE FOR PATIENT 1645 01:19:03,040 --> 01:19:11,280 POPULATIONS IN QUESTION WITH 1646 01:19:11,280 --> 01:19:14,280 THIS WE MAY GET MORE BASIC 1647 01:19:14,280 --> 01:19:15,240 SCIENTISTS THINKING HOW THEIR 1648 01:19:15,240 --> 01:19:25,760 WORK WILL IMPACT PATIENT LIVES. 1649 01:19:27,880 --> 01:19:29,880 WE WANT TO PROVIDE STRONG 1650 01:19:29,880 --> 01:19:33,640 PRE-CLINICAL EFFICACY AREA TO 1651 01:19:33,640 --> 01:19:35,800 TRACT INVESTMENT IN THE 1652 01:19:35,800 --> 01:19:37,640 DEVELOPMENT IN THE FIELD OF RARE 1653 01:19:37,640 --> 01:19:43,120 DISEASES. 1654 01:19:43,120 --> 01:19:52,360 FOR IMPACT, THE PENSION PROCEEDS 1655 01:19:52,360 --> 01:19:54,440 TO DEVELOPMENT ON OTHER PROGRAM 1656 01:19:54,440 --> 01:19:55,760 TO ENTER CLINICAL TRIALS IS OF 1657 01:19:55,760 --> 01:19:57,720 COURSE A SIGNIFICANT IMPACT WE 1658 01:19:57,720 --> 01:20:04,720 COULD HAVE HERE. 1659 01:20:04,720 --> 01:20:06,320 THE LAST SLIDE BEFORE I GET TO 1660 01:20:06,320 --> 01:20:08,000 QUESTIONS AND ENGAGEMENT WITH 1661 01:20:08,000 --> 01:20:13,640 YOU, IN TERMS OF THE CRITERIA 1662 01:20:13,640 --> 01:20:16,440 FOR EVALUATING SUCCESS, I THINK 1663 01:20:16,440 --> 01:20:17,080 THERE'S SEVERAL DIFFERENT WAYS 1664 01:20:17,080 --> 01:20:18,440 TO EVALUATE SUCCESS BUT THE 1665 01:20:18,440 --> 01:20:20,160 MAJOR ONES ARE LISTED HERE TO 1666 01:20:20,160 --> 01:20:22,560 EVALUATE THE NUMBER OF COMPOUNDS 1667 01:20:22,560 --> 01:20:26,680 THAT TRANSITION INTO FULL IND 1668 01:20:26,680 --> 01:20:28,680 ENABLING PRECLINICAL 1669 01:20:28,680 --> 01:20:28,960 DEVELOPMENT. 1670 01:20:28,960 --> 01:20:30,120 AT THE END OF THE DAY THAT'S 1671 01:20:30,120 --> 01:20:35,880 WHAT WE'RE TRYING TO DO HERE. 1672 01:20:35,880 --> 01:20:37,640 ALSO THE TRADITIONALLY NOT 1673 01:20:37,640 --> 01:20:38,280 TRANSLATIONAL SCIENTISTS WE 1674 01:20:38,280 --> 01:20:41,000 START TO PULL INTO THE SPACE I 1675 01:20:41,000 --> 01:20:42,400 THINK WOULD BE ANOTHER MEASURE 1676 01:20:42,400 --> 01:20:45,760 OF SUCCESS FOR THE PROGRAM. 1677 01:20:45,760 --> 01:20:47,600 SO EVEN AT THAT EARLY PHASE OF 1678 01:20:47,600 --> 01:20:50,280 THE PROGRAM WE WOULD BE ABLE TO 1679 01:20:50,280 --> 01:20:51,480 SEE AN EARLY INDICATOR WHETHER 1680 01:20:51,480 --> 01:20:54,080 OR NOT THAT'S REALLY HAPPENING. 1681 01:20:54,080 --> 01:20:56,280 AND THEN SOME OF THE OBSTACLES 1682 01:20:56,280 --> 01:20:58,280 OR BARRIERS OR THINGS WE MIGHT 1683 01:20:58,280 --> 01:21:00,240 ANTICIPATE WOULD BE THE NEED TO 1684 01:21:00,240 --> 01:21:06,440 ENSURE DRUG CANDIDATES THAT ARE 1685 01:21:06,440 --> 01:21:09,080 BEING PROPOSED AND REVIEWING THE 1686 01:21:09,080 --> 01:21:09,400 APPLICATIONS. 1687 01:21:09,400 --> 01:21:12,200 WE ALSO WANT TO ENSURE THE BEST 1688 01:21:12,200 --> 01:21:16,360 RARE DISEASE MODELS ARE BEING 1689 01:21:16,360 --> 01:21:16,840 UTILIZED. 1690 01:21:16,840 --> 01:21:19,520 AND WE WANT TO ENSURE THE RARE 1691 01:21:19,520 --> 01:21:21,200 DISEASE COMMUNITY IS AWARE OF 1692 01:21:21,200 --> 01:21:22,400 THE OPPORTUNITY SO THEY CAN 1693 01:21:22,400 --> 01:21:24,840 ASSIST WITH THE DEVELOPMENT OF 1694 01:21:24,840 --> 01:21:31,320 THE PARTNERSHIPS. 1695 01:21:31,320 --> 01:21:37,440 IN TERMS OF ONGOING RESEARCH AND 1696 01:21:37,440 --> 01:21:38,960 OPPORTUNITIES IN THE AREA WE'VE 1697 01:21:38,960 --> 01:21:40,160 WORKED TO ENSURE WHAT WE ARE 1698 01:21:40,160 --> 01:21:43,160 DOING IS GOING TO BE 1699 01:21:43,160 --> 01:21:44,640 COMPLIMENTARY TO AND NOT 1700 01:21:44,640 --> 01:21:45,960 COMPETING WITH OR OVERLAPPING 1701 01:21:45,960 --> 01:21:47,280 WITH WHAT THEY'RE DOING. 1702 01:21:47,280 --> 01:21:50,680 THIS IS PARTICULARLY NICE IN 1703 01:21:50,680 --> 01:21:54,840 THAT IT IS UP STREAM OF THE 1704 01:21:54,840 --> 01:21:56,680 CLINICAL TRIAL READINESS THEY 1705 01:21:56,680 --> 01:21:56,880 HAVE. 1706 01:21:56,880 --> 01:21:59,880 PARTICULARLY WHEN WE TALK ABOUT 1707 01:21:59,880 --> 01:22:02,120 REPURPOSING A MARKETED 1708 01:22:02,120 --> 01:22:02,760 THERAPEUTIC THIS COULD HELP FEED 1709 01:22:02,760 --> 01:22:09,200 THAT PIPELINE. 1710 01:22:09,200 --> 01:22:13,040 AND A LOT OF THIS WAS INITIATED 1711 01:22:13,040 --> 01:22:14,680 WITH ABSORBING AND SEEING WHAT 1712 01:22:14,680 --> 01:22:20,400 IS HAPPENING IN OUR OWN 1713 01:22:20,400 --> 01:22:21,640 INTRAMURAL RESEARCH PROGRAM AND 1714 01:22:21,640 --> 01:22:25,400 RECOGNIZING THE GAP EXISTS 1715 01:22:25,400 --> 01:22:26,680 BEYOND NCATS AND WANTING TO HELP 1716 01:22:26,680 --> 01:22:32,960 ADDRESS THAT. 1717 01:22:32,960 --> 01:22:34,760 IT'S IT FOR THE SLIDE AND IN THE 1718 01:22:34,760 --> 01:22:37,000 NEXT SLIDE I'LL GO OVER 1719 01:22:37,000 --> 01:22:37,800 QUESTIONS FOR YOU. 1720 01:22:37,800 --> 01:22:39,480 WE'RE INTERESTED TO HEAR IDEAS 1721 01:22:39,480 --> 01:22:43,560 WHAT MIGHT IMPROVE THE 1722 01:22:43,560 --> 01:22:48,920 INITIATIVE WHAT ARE KEY POINTS 1723 01:22:48,920 --> 01:22:50,320 WE SHOULD BE CONSIDERING AND 1724 01:22:50,320 --> 01:22:51,120 SPECIFICALLY VERY INTERESTED TO 1725 01:22:51,120 --> 01:22:53,120 HEAR IF YOU HAVE IDEAS HOW TO 1726 01:22:53,120 --> 01:22:56,840 FACILITATE DEVELOPMENT OF THE 1727 01:22:56,840 --> 01:22:57,560 PARTNERSHIPS WITH THE RARE 1728 01:22:57,560 --> 01:22:59,040 DISEASE COMMUNITY AND WHAT ARE 1729 01:22:59,040 --> 01:23:01,680 THE BEST METRICS USED TO 1730 01:23:01,680 --> 01:23:04,120 EVALUATE THE ASSET AND EVALUATE 1731 01:23:04,120 --> 01:23:05,400 THE RARE DISEASE MODEL. 1732 01:23:05,400 --> 01:23:06,880 OF COURSE ANY ADDITIONAL 1733 01:23:06,880 --> 01:23:07,480 COMMENTS YOU HAVE ARE ALSO 1734 01:23:07,480 --> 01:23:14,920 HELPFUL. 1735 01:23:14,920 --> 01:23:16,840 >>I THINK I'M ONE OF YOUR 1736 01:23:16,840 --> 01:23:17,920 REVIEWERS FOR THIS ONE. 1737 01:23:17,920 --> 01:23:19,840 I ENJOYED LOOKING THROUGH IT. 1738 01:23:19,840 --> 01:23:21,640 I THINK IT'S A GREAT PROGRAM. 1739 01:23:21,640 --> 01:23:22,840 A COUPLE SMALL COMMENTS. 1740 01:23:22,840 --> 01:23:26,400 ONE, I'VE SEEN A TREND AND I 1741 01:23:26,400 --> 01:23:27,680 SUSPECT OTHERS WHERE WE'VE SEEN 1742 01:23:27,680 --> 01:23:29,120 FAMILY ORGANIZATIONS AND PATIENT 1743 01:23:29,120 --> 01:23:32,400 ORGANIZATIONS GOING OUT AND 1744 01:23:32,400 --> 01:23:35,240 DEVELOPING ANIMAL MODELS OR 1745 01:23:35,240 --> 01:23:37,680 BIOLOGICAL MODELS FOR RARE 1746 01:23:37,680 --> 01:23:37,880 DISEASE. 1747 01:23:37,880 --> 01:23:39,520 OUR MIND SET HAS BEEN 1748 01:23:39,520 --> 01:23:40,160 RESEARCHERS DEVELOP THEM AND 1749 01:23:40,160 --> 01:23:42,000 THEY HAVE TO FIND THE FAMILIES. 1750 01:23:42,000 --> 01:23:45,080 WE'RE SEEING THE OPPOSITE AND 1751 01:23:45,080 --> 01:23:48,120 JUST IF YOU CAN FIND A WAY TO 1752 01:23:48,120 --> 01:23:50,560 SWAP THAT INTO YOUR MATCHING 1753 01:23:50,560 --> 01:23:50,840 PROCESS. 1754 01:23:50,840 --> 01:23:54,320 SO SOMETIMES WE WENT OUT AND 1755 01:23:54,320 --> 01:23:55,760 PAID SOMEBODY TO BUILD THE MOUSE 1756 01:23:55,760 --> 01:23:56,000 MODEL. 1757 01:23:56,000 --> 01:23:58,000 LET'S PAIR THEM UP WITH PEOPLE 1758 01:23:58,000 --> 01:24:00,000 DOING THE BASIC BIOLOGY OR 1759 01:24:00,000 --> 01:24:00,720 THERAPEUTIC INTERVENTION TRIALS, 1760 01:24:00,720 --> 01:24:09,320 THINGS LIKE THAT. 1761 01:24:09,320 --> 01:24:16,120 THAT'S A VERY NCATSIAN THING SO 1762 01:24:16,120 --> 01:24:17,280 AND I LOVE THAT PHRASE SO THANK 1763 01:24:17,280 --> 01:24:17,800 YOU FOR THAT. 1764 01:24:17,800 --> 01:24:23,560 >>ARE YOU SAYING IN SOME WAY 1765 01:24:23,560 --> 01:24:34,080 PARTNER WITH THOSE FAMILIES -- 1766 01:24:34,400 --> 01:24:37,280 >>A WAY TO REFERRING RESOURCES. 1767 01:24:37,280 --> 01:24:39,000 YOU'D BE AMAZED HOW MANY GROUPS 1768 01:24:39,000 --> 01:24:40,520 WE GET REACHED OUT TO BY. 1769 01:24:40,520 --> 01:24:42,680 MAYBE TWICE A MONTH AND IT'S WE 1770 01:24:42,680 --> 01:24:46,120 PAID SO AND SO TO DEVELOP THE 1771 01:24:46,120 --> 01:24:46,400 MODEL. 1772 01:24:46,400 --> 01:24:48,800 BUT THEN THEY DON'T REALLY KNOW 1773 01:24:48,800 --> 01:24:50,720 WHERE TO GO NEXT WITH IT. 1774 01:24:50,720 --> 01:24:51,680 >>THAT'S GREAT. 1775 01:24:51,680 --> 01:24:56,200 >>LIKE I SAID, WE HAVE OUR 1776 01:24:56,200 --> 01:24:57,560 MODEL AND THE PATIENTS TRYING TO 1777 01:24:57,560 --> 01:24:58,920 HELP FUND THE RESEARCH AND NEED 1778 01:24:58,920 --> 01:25:04,080 TO GO FIND INVESTIGATORS. 1779 01:25:04,080 --> 01:25:06,960 THE OTHER IS PROBABLY OUT OF 1780 01:25:06,960 --> 01:25:10,680 NIH'S CLASSIVE COMFORT ZONE, I'D 1781 01:25:10,680 --> 01:25:14,440 ADVERTISE THE HELL OUT OF THIS. 1782 01:25:14,440 --> 01:25:21,680 THIS NEEDS TO BE IN FRONT OF OR 1783 01:25:21,680 --> 01:25:26,400 GLOBAL WE WANT TO PUSH THIS 1784 01:25:26,400 --> 01:25:28,440 FORWARD AND CAN BE A GREAT 1785 01:25:28,440 --> 01:25:29,440 LEAD-IN PROJECT FOR FAMILY 1786 01:25:29,440 --> 01:25:31,040 ORGANIZATIONS OR THE OTHERS. 1787 01:25:31,040 --> 01:25:34,520 IT'S ONE WHERE I'D GET OUT AND 1788 01:25:34,520 --> 01:25:36,600 PUSH AS A CAPTURE FOR WHAT'S 1789 01:25:36,600 --> 01:25:37,040 GOING ON. 1790 01:25:37,040 --> 01:25:38,600 THAT'S HOW TO BE SUCCESSFUL IF 1791 01:25:38,600 --> 01:25:40,360 YOU'RE GOING TO TRY TO MATCH 1792 01:25:40,360 --> 01:25:40,720 THESE THINGS UP. 1793 01:25:40,720 --> 01:25:46,240 >>RIGHT YEP. 1794 01:25:46,240 --> 01:25:50,480 TH 1795 01:25:50,480 --> 01:25:51,800 THAT'S GREAT. 1796 01:25:51,800 --> 01:25:52,680 >>I LOVE THE PROGRAM. 1797 01:25:52,680 --> 01:25:53,480 >>THANK YOU. 1798 01:25:53,480 --> 01:25:54,720 >>SURE THING. 1799 01:25:54,720 --> 01:25:56,720 >>THIS IS TED HOLMAN I THINK 1800 01:25:56,720 --> 01:25:59,480 I'M ALSO ON THE REVIEWER LIST. 1801 01:25:59,480 --> 01:26:00,920 NICE PROGRAM. 1802 01:26:00,920 --> 01:26:04,040 NOT SURE I HAVE SPECIFIC -- I'LL 1803 01:26:04,040 --> 01:26:06,480 TELL YOU FROM MY PERSONAL 1804 01:26:06,480 --> 01:26:06,760 EXPERIENCE. 1805 01:26:06,760 --> 01:26:07,720 WE DEVELOPED A LOT OF SMALL 1806 01:26:07,720 --> 01:26:10,280 MOLECULES IN MY LAB AND NORMALLY 1807 01:26:10,280 --> 01:26:21,000 WE TARGET LARGE DISEASES AND WE 1808 01:26:23,480 --> 01:26:24,880 HAVEN'T GOTTEN FUNDING IN THE 1809 01:26:24,880 --> 01:26:26,640 LARGE DISEASE PROJECTS AND WE'VE 1810 01:26:26,640 --> 01:26:32,320 HAD TO PIVOT AND ORPHAN DISEASE 1811 01:26:32,320 --> 01:26:34,360 DESIGNATION HELPS WITH FINDING 1812 01:26:34,360 --> 01:26:34,640 INVESTORS. 1813 01:26:34,640 --> 01:26:37,160 THERE'S A LOT OF INVESTMENT 1814 01:26:37,160 --> 01:26:38,720 STRATEGIES THAT PUSH YOU TO GO 1815 01:26:38,720 --> 01:26:43,040 ORPHAN FIRST, GET YOUR FDA 1816 01:26:43,040 --> 01:26:45,640 APPROVAL WITH ORPHAN INDICATION 1817 01:26:45,640 --> 01:26:47,800 AND PIVOT TO THE LARGER DISEASE 1818 01:26:47,800 --> 01:26:49,240 REQUIRE MORE FUNDING FOR 1819 01:26:49,240 --> 01:26:51,840 CLINICAL TRIALS, ETCETERA. 1820 01:26:51,840 --> 01:26:57,920 ONE HUGE CHALLENGE AS AN 1821 01:26:57,920 --> 01:27:00,200 ACADEMIC IS TRYING TO FIND THE 1822 01:27:00,200 --> 01:27:02,120 ORPHAN INDICATION THAT CAN 1823 01:27:02,120 --> 01:27:03,240 POTENTIALLY BENEFIT FROM MY 1824 01:27:03,240 --> 01:27:03,560 DISCOVERY. 1825 01:27:03,560 --> 01:27:06,160 WE'VE HAD TO DO A LOT OF LEG 1826 01:27:06,160 --> 01:27:08,080 WORK AND FIGURE OUT WHAT'S GOING 1827 01:27:08,080 --> 01:27:08,320 ON. 1828 01:27:08,320 --> 01:27:10,000 I DON'T KNOW HOW NCATS CAN DO 1829 01:27:10,000 --> 01:27:13,640 THIS BUT I'M SURE YOU GUYS HAVE 1830 01:27:13,640 --> 01:27:17,640 A LOT OF DATA MINING EXPERTS 1831 01:27:17,640 --> 01:27:20,040 WHERE YOU SAID IF YOU HAVE THE 1832 01:27:20,040 --> 01:27:21,920 TARGET MY POTENTIAL ONE IS 1833 01:27:21,920 --> 01:27:23,440 OXYGENASE AND IT'S IMPLICATED IN 1834 01:27:23,440 --> 01:27:28,080 A LOT OF DISEASES BUT HELP THEM 1835 01:27:28,080 --> 01:27:30,120 A, FIND THE ORPHAN INVITATION 1836 01:27:30,120 --> 01:27:32,000 THAT COULD BE BENEFICIAL TO THE 1837 01:27:32,000 --> 01:27:32,680 SMALL MOLECULE. 1838 01:27:32,680 --> 01:27:35,120 YOU HAVE PATHWAYS THAT 1839 01:27:35,120 --> 01:27:36,480 IMPLICATED IN MANY ORPHAN 1840 01:27:36,480 --> 01:27:37,520 INDICATIONS. 1841 01:27:37,520 --> 01:27:39,360 IT'S HARD TO SIFT THROUGH ALL 1842 01:27:39,360 --> 01:27:44,160 THE LITERATURE AND FIND OUT 1843 01:27:44,160 --> 01:27:46,000 WHICH ONE IS GOING TO BENEFIT 1844 01:27:46,000 --> 01:27:48,000 FROM THE SMALL MOLECULE AND WE 1845 01:27:48,000 --> 01:27:48,960 STUMBLED ON TO A COUPLE. 1846 01:27:48,960 --> 01:27:53,640 THE NEXT THING THE CHALLENGE WE 1847 01:27:53,640 --> 01:27:59,040 HAD TO DO IS FIND PEOPLE TO TEST 1848 01:27:59,040 --> 01:28:01,080 THE SMALL MOLECULE WITH AND NO 1849 01:28:01,080 --> 01:28:04,920 ONE HAS FUNDING SO IN THEORY 1850 01:28:04,920 --> 01:28:06,400 YOU'D NEED TO HAVE SOME 1851 01:28:06,400 --> 01:28:10,040 MECHANISM IF YOU CAN PAIR UP 1852 01:28:10,040 --> 01:28:13,200 WITH AN ORPHAN INDICATION 1853 01:28:13,200 --> 01:28:15,280 CHEMIST AND FIND A BIOLOGIST AND 1854 01:28:15,280 --> 01:28:17,760 HAVE PROOF OF CONCEPT FIRST 1855 01:28:17,760 --> 01:28:18,040 PASSES. 1856 01:28:18,040 --> 01:28:19,960 WE'VE HAD TO DO IT ON OUR OWN 1857 01:28:19,960 --> 01:28:25,000 DIME AND NOW PUTTING IN AN SBIR 1858 01:28:25,000 --> 01:28:29,840 GRANT TO PAVE THE NEXT STEP. 1859 01:28:29,840 --> 01:28:32,400 PROVING IT WORKS IS CRITICAL. 1860 01:28:32,400 --> 01:28:38,720 YOU HAVE TO PAIR UP AND FIND A 1861 01:28:38,720 --> 01:28:45,720 MECHANISM TO ADVERTISE TO THE 1862 01:28:45,720 --> 01:28:51,120 ACADEMIC AND PAIR THEM AND THEN 1863 01:28:51,120 --> 01:28:59,960 TO HAVE FUND IING AND TO FIND 1864 01:28:59,960 --> 01:29:01,680 VENTURE CAPITAL YOU HAVE 1865 01:29:01,680 --> 01:29:03,440 PLATFORM DATA THAT SAYS YOUR 1866 01:29:03,440 --> 01:29:04,240 SMALL MOLECULE IS WORK IN YOUR 1867 01:29:04,240 --> 01:29:14,520 ORPHAN INDICATION. 1868 01:29:18,320 --> 01:29:21,920 AND YOU HAVE TO APPLY FOR ORPHAN 1869 01:29:21,920 --> 01:29:23,560 MOLECULE AND DISEASE AND JUST 1870 01:29:23,560 --> 01:29:24,560 TALKED TO SOMEBODY WHO WANTED 1871 01:29:24,560 --> 01:29:27,240 $50,000 TO DO THAT AND ONCE YOU 1872 01:29:27,240 --> 01:29:28,760 GET THE DESIGNATION AGAIN 1873 01:29:28,760 --> 01:29:29,800 VENTURE CAPITAL MONEY OPENS UP 1874 01:29:29,800 --> 01:29:33,800 TO GO FORWARD AND DEVELOP THIS 1875 01:29:33,800 --> 01:29:35,800 BECAUSE THEY SEE THE BENEFIT 1876 01:29:35,800 --> 01:29:38,600 YOUR TARGET YOU'RE GOING AFTER 1877 01:29:38,600 --> 01:29:43,880 HAS THIS LONG-TERM FINANCIAL 1878 01:29:43,880 --> 01:29:46,680 BENEFIT OF BEING DESIGNATED AS 1879 01:29:46,680 --> 01:29:47,960 AN ORPHAN INDICATION AND GOING 1880 01:29:47,960 --> 01:29:53,120 BACK TO THE SUGGESTION OF THESE 1881 01:29:53,120 --> 01:29:53,480 STAKEHOLDERS. 1882 01:29:53,480 --> 01:29:55,320 WE'VE BEEN DESPERATELY TRYING TO 1883 01:29:55,320 --> 01:29:58,240 REACH OUT TO STAKEHOLDERS FOR 1884 01:29:58,240 --> 01:30:01,320 THE PARTICULAR ORPHAN 1885 01:30:01,320 --> 01:30:02,640 INDICATIONS WE'RE INTERESTED IN 1886 01:30:02,640 --> 01:30:04,760 TO HAVE THEM HELP US FIND 1887 01:30:04,760 --> 01:30:05,120 VENTURE CAPITAL. 1888 01:30:05,120 --> 01:30:06,800 THAT'S WHAT'S KILLING US. 1889 01:30:06,800 --> 01:30:08,880 WE CAN'T FIND IT TO GO TO THE 1890 01:30:08,880 --> 01:30:09,640 NEXT STEP. 1891 01:30:09,640 --> 01:30:11,320 WE ARE LOOKING AT FAMILY 1892 01:30:11,320 --> 01:30:12,520 INVESTORS AND PEOPLE WITH MONEY 1893 01:30:12,520 --> 01:30:18,560 TO HELP US GET OVER THE HUMP. 1894 01:30:18,560 --> 01:30:20,760 THE SMALL STAKEHOLDERS GROUPS, 1895 01:30:20,760 --> 01:30:25,320 IF YOU CAN HELP THEM UNDERSTAND 1896 01:30:25,320 --> 01:30:27,520 THE SYSTEM AND MAYBE JS THEM HOW 1897 01:30:27,520 --> 01:30:32,720 THEY CAN GET FUNDING AND MAYBE 1898 01:30:32,720 --> 01:30:35,360 NOT JUST GET FUNDING BUT PARTNER 1899 01:30:35,360 --> 01:30:37,160 WITH SCIENTIST TO GO OUT TO THE 1900 01:30:37,160 --> 01:30:38,800 LARGE INVESTMENT FIRMS, 1901 01:30:38,800 --> 01:30:43,320 SOMETIMES THAT CAN HELP THE 1902 01:30:43,320 --> 01:30:44,040 STAKEHOLDER. 1903 01:30:44,040 --> 01:30:44,640 SOMETIMES THEY LIKE HEARING 1904 01:30:44,640 --> 01:30:46,480 ABOUT THE STAKEHOLDERS AND 1905 01:30:46,480 --> 01:30:47,440 SOMETIMES THEY ARE ALL BUSINESS 1906 01:30:47,440 --> 01:30:53,480 AND DON'T GIVE A DAMN ABOUT THE 1907 01:30:53,480 --> 01:30:53,800 BOTTOM LINE. 1908 01:30:53,800 --> 01:31:01,480 I REMEMBER GOING TO THE 1909 01:31:01,480 --> 01:31:06,880 SYMPOSIUM ON CANCER AND TALKED 1910 01:31:06,880 --> 01:31:10,400 ABOUT THEIR PERSONAL EXPERIENCE, 1911 01:31:10,400 --> 01:31:11,680 THE STORIES MOTIVATE BASIC 1912 01:31:11,680 --> 01:31:13,320 SCIENTISTS TO DO MORE. 1913 01:31:13,320 --> 01:31:15,040 I DON'T KNOW HOW THAT PLAYS IN. 1914 01:31:15,040 --> 01:31:16,040 I'M GIVING IDEAS. 1915 01:31:16,040 --> 01:31:17,880 I'M NOT SURE I HAVE SOLUTIONS 1916 01:31:17,880 --> 01:31:23,320 BUT TRYING TO GIVE A PERSPECTIVE 1917 01:31:23,320 --> 01:31:24,760 FROM MY PERSPECTIVE OF HAVING 1918 01:31:24,760 --> 01:31:28,280 DEVELOPED SMALL MOLECULES AND 1919 01:31:28,280 --> 01:31:29,360 KNOWING V.C. WANTS ORPHAN 1920 01:31:29,360 --> 01:31:30,360 INDICATION THAT SOMETHING WORKS. 1921 01:31:30,360 --> 01:31:36,360 HOW DO WE PAIR UP SOMEONE LIKE 1922 01:31:36,360 --> 01:31:37,600 MYSELF TO THESE INCREDIBLE 1923 01:31:37,600 --> 01:31:39,080 GROUPS AS WELL AS ANIMAL MODELS 1924 01:31:39,080 --> 01:31:43,720 TO GET THE PRELIMINARY DATA TO 1925 01:31:43,720 --> 01:31:44,840 INSPIRE V.C. TO GIVE MORE MONEY 1926 01:31:44,840 --> 01:31:46,000 TO GO FORWARD. 1927 01:31:46,000 --> 01:31:48,800 I HOPE I HAVEN'T CONFUSED YOU 1928 01:31:48,800 --> 01:31:50,000 BUT TRYING TO GIVE MY 1929 01:31:50,000 --> 01:31:50,720 PERSPECTIVE ON THE CHALLENGES 1930 01:31:50,720 --> 01:31:52,440 I'VE PERSONALLY HAD THE LAST 1931 01:31:52,440 --> 01:31:55,640 FIVE OR SIX YEARS TRYING TO GET 1932 01:31:55,640 --> 01:31:56,640 MY SMALL MOLECULES TO SOMEONE 1933 01:31:56,640 --> 01:31:56,960 WHO CAN HELP. 1934 01:31:56,960 --> 01:32:03,280 >>RIGHT. 1935 01:32:03,280 --> 01:32:07,800 WE WANT TO UNDERSTAND HOW TO 1936 01:32:07,800 --> 01:32:09,560 BRING THE PARTIES TOGETHER AND 1937 01:32:09,560 --> 01:32:10,960 PROVIDING THE SUPPORT TO DO 1938 01:32:10,960 --> 01:32:13,160 THAT. 1939 01:32:13,160 --> 01:32:16,240 IN TERMS OF IDENTIFYING THE 1940 01:32:16,240 --> 01:32:19,280 ORPHAN INDICATION AND TRANSLATOR 1941 01:32:19,280 --> 01:32:25,320 ISN'T QUITE READY FOR PRIME TIME 1942 01:32:25,320 --> 01:32:29,800 YET. 1943 01:32:29,800 --> 01:32:32,440 HOPEFULLY TRANSLATOR WILL HELP 1944 01:32:32,440 --> 01:32:33,680 AT SOME POINT. 1945 01:32:33,680 --> 01:32:37,640 THERE USED TO BE LITERALLY A 1946 01:32:37,640 --> 01:32:40,800 SPREAD SHEET AVAILABLE THROUGH 1947 01:32:40,800 --> 01:32:41,960 FDA AND IF THAT'S STILL 1948 01:32:41,960 --> 01:32:42,920 AVAILABLE WE CAN DIG THAT OUT. 1949 01:32:42,920 --> 01:32:48,400 I THINK WE SHOULD BE ABLE TO 1950 01:32:48,400 --> 01:32:51,280 LINK TO IT. 1951 01:32:51,280 --> 01:32:53,600 >>WHAT TED SAID RESONATES TO 1952 01:32:53,600 --> 01:32:57,640 FINDING WAYS WHERE YOU CAN 1953 01:32:57,640 --> 01:32:58,920 CONVENE ALL THE GROUPS TOGETHER 1954 01:32:58,920 --> 01:33:00,040 EVEN IF YOU'RE KEEPING TRACK OF 1955 01:33:00,040 --> 01:33:02,040 WHAT ARE THE AVAILABLE RESOURCES 1956 01:33:02,040 --> 01:33:06,840 AROUND THE RARE DISEASE MODEL OR 1957 01:33:06,840 --> 01:33:09,640 THE SMALL MOLECULE GROUPS EXIST 1958 01:33:09,640 --> 01:33:12,720 AND I KNOW THEY EXIST BUT I 1959 01:33:12,720 --> 01:33:13,800 THINK THEY'RE GOOD POINTS. 1960 01:33:13,800 --> 01:33:16,360 >>I WANT TO GIVE CREDIT TO 1961 01:33:16,360 --> 01:33:20,520 STEVE WHO RECOGNIZED THERE IS 1962 01:33:20,520 --> 01:33:25,600 THIS NEED AND MAYBE BEFORE I GO 1963 01:33:25,600 --> 01:33:26,800 TO MATIAS TO SEE IF SHE WANTS TO 1964 01:33:26,800 --> 01:33:34,320 RESPOND AS WELL. 1965 01:33:34,320 --> 01:33:36,640 >>WE GET TO THE MATCH MATCHING 1966 01:33:36,640 --> 01:33:38,680 WE CAN THEORETICALLY DO WITH THE 1967 01:33:38,680 --> 01:33:42,600 GROUPS THAT HAVE THE MODELS AS 1968 01:33:42,600 --> 01:33:44,760 WELL AS WITH THE V.C. AND I 1969 01:33:44,760 --> 01:33:49,640 WORKED WITH THE OFFICE OF 1970 01:33:49,640 --> 01:33:52,200 STRATEGY ALLIANCE ON IS A WORK 1971 01:33:52,200 --> 01:33:54,680 SHAPE SPECIFIC TO PAIN AND 1972 01:33:54,680 --> 01:33:56,640 BRINGING V.C. AND INDUSTRY 1973 01:33:56,640 --> 01:33:58,320 EXPERTS INTERESTED IN PAYING AND 1974 01:33:58,320 --> 01:34:01,560 WE'RE PUTTING THEM IN FRONT OF 1975 01:34:01,560 --> 01:34:02,760 THE SBIR AWARDEES THAT HAVE 1976 01:34:02,760 --> 01:34:08,040 PROJECTS THERE. 1977 01:34:08,040 --> 01:34:10,120 DOING A SIMILAR WORKSHOP WITHIN 1978 01:34:10,120 --> 01:34:13,440 THE RARE DISEASE SPACE IS OF 1979 01:34:13,440 --> 01:34:15,040 INTEREST AND I TALK TO THE GROUP 1980 01:34:15,040 --> 01:34:17,640 ABOUT THAT NOW AND THINK WE CAN 1981 01:34:17,640 --> 01:34:23,080 MOVE THAT FORWARD. 1982 01:34:23,080 --> 01:34:26,760 >>THERE'S SWISS SHOWCASE. 1983 01:34:26,760 --> 01:34:31,040 PEOPLE WHO HAVE PROJECTS AND 1984 01:34:31,040 --> 01:34:32,080 THEY HAVE A HOOK. 1985 01:34:32,080 --> 01:34:33,280 IT'S GREAT. 1986 01:34:33,280 --> 01:34:37,640 IT GETS IN FRONT OF THE FUNDERS 1987 01:34:37,640 --> 01:34:48,080 AND IT MAKES A DIFFERENCE. 1988 01:34:55,520 --> 01:34:56,800 >>THANK YOU. 1989 01:34:56,800 --> 01:35:06,960 MATIAS. 1990 01:35:08,000 --> 01:35:15,640 >>WHAT WE HAVE IS 80% OF THE 1991 01:35:15,640 --> 01:35:20,800 PEOPLE WE KNOW DON'T KNOW WHAT 1992 01:35:20,800 --> 01:35:24,920 A GENETIC LESION DOES AND WE'RE 1993 01:35:24,920 --> 01:35:26,520 ACTIVE IN MAPPING THE ASSOCIATED 1994 01:35:26,520 --> 01:35:29,000 PATHWAYS ACCORDING TO 1995 01:35:29,000 --> 01:35:29,320 DYSFUNCTION. 1996 01:35:29,320 --> 01:35:32,480 WE HAVE COMPOUNDS TO INTERFERE 1997 01:35:32,480 --> 01:35:36,480 WITH THE BIOLOGICAL PROCESSES. 1998 01:35:36,480 --> 01:35:39,440 SOMETIMES WE KNOW THEM, 1999 01:35:39,440 --> 01:35:40,880 SOMETIMES WE DON'T YET WE CAN AT 2000 01:35:40,880 --> 01:35:45,760 LEAST GET A MECHANISTIC 2001 01:35:45,760 --> 01:35:48,680 ASSOCIATION AND WE HAVE DONE 2002 01:35:48,680 --> 01:35:53,680 THAT EFFECTIVELY FOR KNOWN 2003 01:35:53,680 --> 01:35:54,280 MOLECULE PATHS. 2004 01:35:54,280 --> 01:35:56,720 AND YOU HAVE TO GET A MODEL 2005 01:35:56,720 --> 01:35:58,320 SYSTEM WITHIN THE CELL-BASED 2006 01:35:58,320 --> 01:36:04,720 ASSAYS TO WORK WITH STAFF. 2007 01:36:04,720 --> 01:36:07,200 THERE'S CHIPS AND YOU CAN PUT 2008 01:36:07,200 --> 01:36:08,680 THEM IN AND CLEARLY THEY'LL NEED 2009 01:36:08,680 --> 01:36:13,640 TO BE FEATURES IN HERE AND YES, 2010 01:36:13,640 --> 01:36:15,880 WE ARE DOING THAT IN OUR END 2011 01:36:15,880 --> 01:36:20,640 TOGETHER WITH THE CHIP 2012 01:36:20,640 --> 01:36:24,360 EFFECTIVELY AND AND WE PROFILE 2013 01:36:24,360 --> 01:36:27,040 TO A PHASE 2 TRIAL DOING EXACTLY 2014 01:36:27,040 --> 01:36:28,600 THAT ELEMENT. 2015 01:36:28,600 --> 01:36:30,840 CRITICAL INSTRUMENT HERE AND 2016 01:36:30,840 --> 01:36:36,840 WHERE WE INITIATED 2017 01:36:36,840 --> 01:36:41,960 PRE-COMPETITIVE CONSORTIUM TO 2018 01:36:41,960 --> 01:36:49,360 MAP TO DISEASE AND WHERE THEY 2019 01:36:49,360 --> 01:36:50,760 CHANNEL TOGETHER AND WOULD CAN 2020 01:36:50,760 --> 01:36:51,440 IMPACT MORE THAN ONE OF THE 2021 01:36:51,440 --> 01:36:57,240 DISEASES ALONE. 2022 01:36:57,240 --> 01:37:02,720 AND MAP AGAINST A HUMAN DISEASE 2023 01:37:02,720 --> 01:37:04,920 MAP AND IT'S UNDER THE BIO 2024 01:37:04,920 --> 01:37:05,320 INFORMATICS. 2025 01:37:05,320 --> 01:37:09,280 IF YOU HAVE THE MODEL SYSTEM OR 2026 01:37:09,280 --> 01:37:11,200 TERMS THEN YOU KNOW WHICH MODEL 2027 01:37:11,200 --> 01:37:12,640 SYSTEM MAPS INTO WHICH HUMAN 2028 01:37:12,640 --> 01:37:14,160 DISEASE OR WHICH HUMAN DISEASE 2029 01:37:14,160 --> 01:37:24,640 MAPS TO WHICH MODEL SYSTEM. 2030 01:37:29,280 --> 01:37:31,480 AND WE NEED TO ASK WHICH HUMAN 2031 01:37:31,480 --> 01:37:36,720 DISEASE IS LINKED TO THE MODEL 2032 01:37:36,720 --> 01:37:46,800 SYSTEM TO REACH OUT AND CONTACT 2033 01:37:46,800 --> 01:37:48,560 THE RARE DISEASE COMMUNITY AND 2034 01:37:48,560 --> 01:37:54,560 WHAT IS INQUIRED IS THE FEE 2035 01:37:54,560 --> 01:37:54,840 PHENOTYPING. 2036 01:37:54,840 --> 01:37:57,640 THE MODEL SYSTEMS AND GETS BACK 2037 01:37:57,640 --> 01:38:04,360 TO DATA SHARING METHODS. 2038 01:38:04,360 --> 01:38:06,760 AND YOU GET THE MODEL SYSTEMS 2039 01:38:06,760 --> 01:38:08,200 CHARACTERIZED IN A WAY TO BE 2040 01:38:08,200 --> 01:38:10,920 USEFUL ABOVE AND BEYOND THE 2041 01:38:10,920 --> 01:38:14,920 MOLECULES TARGETED TO THIS 2042 01:38:14,920 --> 01:38:15,320 APPROACH. 2043 01:38:15,320 --> 01:38:16,440 AND IN THE RARE DISEASE SPACE 2044 01:38:16,440 --> 01:38:17,960 IT'S EXACTLY WHAT WE DID. 2045 01:38:17,960 --> 01:38:21,480 WE HAD HALF A DOZEN MODEL 2046 01:38:21,480 --> 01:38:24,520 SYSTEMS ON SINGLE CELL LEVEL 2047 01:38:24,520 --> 01:38:26,760 PHENOTYPE AND WE ARE ALIGNING 2048 01:38:26,760 --> 01:38:28,800 THE PATHWAYS AGAINST COMPANIES 2049 01:38:28,800 --> 01:38:32,760 WANTING TO REPURPOSE INTO THE 2050 01:38:32,760 --> 01:38:34,920 SPACE AND KNOW WHAT IS LIVING 2051 01:38:34,920 --> 01:38:39,480 WHERE TO BRING THEM TO TARGETED 2052 01:38:39,480 --> 01:38:44,720 THERAPIES AND WE PUBLISHED INTO 2053 01:38:44,720 --> 01:38:48,840 MAPPING AND WE LOOK AT 2054 01:38:48,840 --> 01:38:54,200 PHENOTYPING IN A WAY TO GLOBALLY 2055 01:38:54,200 --> 01:38:56,760 MAP AGAINST THIS AND PHENOTYPE 2056 01:38:56,760 --> 01:38:59,760 IN A WAY THAT OTHER PATHWAYS 2057 01:38:59,760 --> 01:39:03,440 COULD BE PROJECTED BACK TO THE 2058 01:39:03,440 --> 01:39:04,320 HUMAN DISEASE SPACE. 2059 01:39:04,320 --> 01:39:08,520 >>YEAH, NO. 2060 01:39:08,520 --> 01:39:10,080 THAT'S A GREAT SUGGESTION. 2061 01:39:10,080 --> 01:39:11,480 I LOVE THAT. 2062 01:39:11,480 --> 01:39:12,720 IT'S SOMETHING I HADN'T THOUGHT 2063 01:39:12,720 --> 01:39:14,920 ABOUT AND SO YEAH, THAT SOUNDS 2064 01:39:14,920 --> 01:39:25,160 REALLY GOOD. 2065 01:39:38,840 --> 01:39:44,960 >>FIRST, I AGREE WITH MARSHALL 2066 01:39:44,960 --> 01:39:45,520 THERE'S MANY PATIENT 2067 01:39:45,520 --> 01:39:46,840 ORGANIZATIONS FUNDING THIS WORK 2068 01:39:46,840 --> 01:39:48,920 FOR A LONG TIME AND SAVVY IN THE 2069 01:39:48,920 --> 01:39:52,640 SPACE AND HAVE LEARNED A LOT OF 2070 01:39:52,640 --> 01:39:53,880 LESSONS IN THE SPACE AS WELL AS. 2071 01:39:53,880 --> 01:39:57,720 WE HAVE INSIGHTS AND HIND SIGHT 2072 01:39:57,720 --> 01:39:59,280 TO SHARE. 2073 01:39:59,280 --> 01:40:01,360 I MIGHT SUGGEST TALKING TO THEM 2074 01:40:01,360 --> 01:40:04,560 NOT JUST ABOUT BEST PRACTICES 2075 01:40:04,560 --> 01:40:09,320 BUT IN HINDSIGHT WHAT WE MAY 2076 01:40:09,320 --> 01:40:11,400 HAVE DONE NEWER TO THE SPACE AND 2077 01:40:11,400 --> 01:40:11,720 RELATIONSHIP. 2078 01:40:11,720 --> 01:40:14,720 THE OTHER IS TO TEST POINTS AND 2079 01:40:14,720 --> 01:40:16,880 TO STEVEN'S COMMENTS AROUND THE 2080 01:40:16,880 --> 01:40:18,240 MATCHING AND MATCH MAKING. 2081 01:40:18,240 --> 01:40:19,880 THERE ARE SOME ORGANIZATIONS 2082 01:40:19,880 --> 01:40:22,160 THAT HAVE SET UP FORMALIZED 2083 01:40:22,160 --> 01:40:24,200 PROGRAMS IN THE SPACE AND I PUT 2084 01:40:24,200 --> 01:40:26,720 ONE OF THEM IN THE CHAT HERE BUT 2085 01:40:26,720 --> 01:40:29,560 WHEN I WAS WITH THE MUSCULAR 2086 01:40:29,560 --> 01:40:32,280 DYSTROPHY ASSOCIATION WE SAID UP 2087 01:40:32,280 --> 01:40:36,160 MVP WHICH HAS BEEN SUCCESSFUL IN 2088 01:40:36,160 --> 01:40:42,320 FINDING VENTURE PHILANTHROPISTS 2089 01:40:42,320 --> 01:40:44,160 EARLY ON AND I RECOMMEND TALKING 2090 01:40:44,160 --> 01:40:49,320 TO MDA AND SURE YOU KNOW THE 2091 01:40:49,320 --> 01:40:50,000 SCIENTIFIC LEADERS THERE. 2092 01:40:50,000 --> 01:40:52,120 SO THERE'S ORGANIZATIONS THAT 2093 01:40:52,120 --> 01:40:53,200 HAVE TACKLED SOME OF THIS. 2094 01:40:53,200 --> 01:40:54,640 MAYBE TO THE POINT OF 2095 01:40:54,640 --> 01:40:57,920 PARTNERSHIP AND WORKING WITH THE 2096 01:40:57,920 --> 01:40:58,880 COMMUNITY. 2097 01:40:58,880 --> 01:41:00,640 THESE ARE THINGS THE RARE 2098 01:41:00,640 --> 01:41:01,360 DISEASE COMMUNITY CARES DEEPLY 2099 01:41:01,360 --> 01:41:03,760 ABOUT AND I AGREE WITH MARSHAL 2100 01:41:03,760 --> 01:41:06,000 WORKING WITH OUR COLLABORATIONS 2101 01:41:06,000 --> 01:41:06,840 AND ORGANIZATIONS AND 2102 01:41:06,840 --> 01:41:08,680 ADVERTISING THIS AND KNOWING 2103 01:41:08,680 --> 01:41:11,320 WHERE THE OPPORTUNITIES ARE KEY. 2104 01:41:11,320 --> 01:41:15,640 YOU HAD A BULLET AROUND HOW THAT 2105 01:41:15,640 --> 01:41:17,280 ENGAGEMENT WILL BE CRITICAL AND 2106 01:41:17,280 --> 01:41:18,760 I AM SURE IT'S JUST FOR THE SAKE 2107 01:41:18,760 --> 01:41:21,320 OF SPACE ON THE SLIDE THE BULLET 2108 01:41:21,320 --> 01:41:23,120 HAD YOUR FIRST PRIORITY, WHICH I 2109 01:41:23,120 --> 01:41:25,360 APPRECIATED WAS UP THERE WOULD 2110 01:41:25,360 --> 01:41:26,480 BE ENGAGING WITH I THINK 2111 01:41:26,480 --> 01:41:29,640 CLINICAL EXPERTS AND PATIENTS 2112 01:41:29,640 --> 01:41:32,800 AND PATIENT ADVOCACIES AND I 2113 01:41:32,800 --> 01:41:37,600 WANT TO POINT OUT THOSE ARE 2114 01:41:37,600 --> 01:41:41,640 THREE DISTINCT STAKEHOLDER 2115 01:41:41,640 --> 01:41:45,600 GROUPS WITH DISTINCT PURPOSES 2116 01:41:45,600 --> 01:41:47,160 AND APPROACH THEM INDIVIDUALLY. 2117 01:41:47,160 --> 01:41:48,360 ALL THIS IS WONDERFUL AND THANK 2118 01:41:48,360 --> 01:41:58,960 YOU FOR PRIORITIZING THIS. 2119 01:41:58,960 --> 01:42:04,320 >>THIS IS AN INTERESTING 2120 01:42:04,320 --> 01:42:07,720 CONVERSATION WITH COUNCIL 2121 01:42:07,720 --> 01:42:07,920 MEMBERS. 2122 01:42:07,920 --> 01:42:10,480 I APPRECIATE THE COMMENTS AND 2123 01:42:10,480 --> 01:42:10,760 SUGGESTIONS. 2124 01:42:10,760 --> 01:42:18,080 AND TO BUILD A LITTLE BIT ON 2125 01:42:18,080 --> 01:42:19,880 WHAT'S ON ONE OF YOUR SLIDES TO 2126 01:42:19,880 --> 01:42:25,320 PUT PATIENTS BACK BY REQUIRING 2127 01:42:25,320 --> 01:42:27,640 PARTNERSHIPS AND MENTIONED THREE 2128 01:42:27,640 --> 01:42:28,280 STAKEHOLDERS INCLUDING PATIENTS 2129 01:42:28,280 --> 01:42:38,680 AND PATIENT ADVOCATES. 2130 01:42:39,040 --> 01:42:44,440 AND PUSH BASIC SCIENTISTS TO 2131 01:42:44,440 --> 01:42:46,680 THINK MORE INTENTIONAL ABOUT 2132 01:42:46,680 --> 01:42:48,040 STUDIES THAT HAVE MORE RELEVANCE 2133 01:42:48,040 --> 01:42:49,760 TO THE PATIENT POPULATION IN 2134 01:42:49,760 --> 01:42:57,160 QUESTION. 2135 01:42:57,160 --> 01:43:01,640 AND WE MOVE TO THE TRANSLATIONAL 2136 01:43:01,640 --> 01:43:05,560 SCIENCE AND RESEARCH SPACE. 2137 01:43:05,560 --> 01:43:07,080 I'M GLAD YOU INCLUDED THAT 2138 01:43:07,080 --> 01:43:09,400 BECAUSE IT WOULD BE GREAT TO 2139 01:43:09,400 --> 01:43:11,200 HAVE A SENSE FROM THE 2140 01:43:11,200 --> 01:43:16,400 RESEARCHERS THAT ARE GOING TO 2141 01:43:16,400 --> 01:43:19,320 APPLY FOR THIS MECHANISM TO 2142 01:43:19,320 --> 01:43:20,760 REALLY BECOME TRANSLATIONAL 2143 01:43:20,760 --> 01:43:30,960 RESEARCHERS. 2144 01:43:32,840 --> 01:43:36,600 AND IF THEY'RE PUSHED TO 2145 01:43:36,600 --> 01:43:37,880 ARTICULATE HOW THAT'S GOING TO 2146 01:43:37,880 --> 01:43:38,120 HAPPEN. 2147 01:43:38,120 --> 01:43:44,120 FOR EXAMPLE, I WOULD LOVE TO SEE 2148 01:43:44,120 --> 01:43:44,760 THE DISSEMINATION PLAN WORKING 2149 01:43:44,760 --> 01:43:48,680 WITH THE PATIENTS AND FAMILIES 2150 01:43:48,680 --> 01:43:50,760 THEMSELVES HOW TO BRING THAT TO 2151 01:43:50,760 --> 01:43:52,360 THEIR ATTENTION. 2152 01:43:52,360 --> 01:43:59,000 BECAUSE, I AM NOT AN EXPERT IN 2153 01:43:59,000 --> 01:44:00,320 RARE DISEASES BUT I ANTICIPATE 2154 01:44:00,320 --> 01:44:02,360 THERE'S TREMENDOUS DISPARITIES 2155 01:44:02,360 --> 01:44:04,200 THERE AS TO WHO BENEFITS 2156 01:44:04,200 --> 01:44:05,320 SPECIFICALLY FROM THE DRUG 2157 01:44:05,320 --> 01:44:15,520 DEVELOPMENT. 2158 01:44:22,400 --> 01:44:25,600 >>I THINK WE WANT TO ADDRESS 2159 01:44:25,600 --> 01:44:26,560 WHERE THE RESEARCHER DOESN'T 2160 01:44:26,560 --> 01:44:27,920 REALIZE THEY MISSED THE 2161 01:44:27,920 --> 01:44:29,640 OPPORTUNITY AND MAKE IT MORE 2162 01:44:29,640 --> 01:44:33,400 OBVIOUS FOR THEM. 2163 01:44:33,400 --> 01:44:40,840 THERE'S OPPORTUNITY I'VE NEVER 2164 01:44:40,840 --> 01:44:42,320 MED A PRE-CLINICAL SCIENTIST WHO 2165 01:44:42,320 --> 01:44:43,600 TURNED DOWN THE OPPORTUNITY TO 2166 01:44:43,600 --> 01:44:47,480 HAVE WHAT THEY'RE DOING BECOME 2167 01:44:47,480 --> 01:44:48,480 SOMETHING THAT IMPACTS. 2168 01:44:48,480 --> 01:44:50,680 >>NOBODY WOULD SAY, NO, NO, NO, 2169 01:44:50,680 --> 01:44:52,840 I WANT TO GO BACK TO DOING MY 2170 01:44:52,840 --> 01:44:54,120 THING WHERE IT DOESN'T HAVE 2171 01:44:54,120 --> 01:45:01,640 ANYTHING TO DO WITH THE REAL 2172 01:45:01,640 --> 01:45:09,520 WORLD. 2173 01:45:09,520 --> 01:45:13,040 AND FROM A PRACTICAL STANDPOINT 2174 01:45:13,040 --> 01:45:14,760 IT'S NOT NECESSARY LE THE WAY 2175 01:45:14,760 --> 01:45:15,560 THE RESEARCHERS ARE GOING TO 2176 01:45:15,560 --> 01:45:20,400 SPEND THEIR LIFE TO TRY TO GET 2177 01:45:20,400 --> 01:45:21,560 TO THAT POINT. 2178 01:45:21,560 --> 01:45:23,280 WHEN WE SHOW THEM THERE'S AN 2179 01:45:23,280 --> 01:45:24,520 OPPORTUNITY AND OBVIOUSLY IT 2180 01:45:24,520 --> 01:45:25,640 WON'T FIT FOR ANYBODY, ANYWAY. 2181 01:45:25,640 --> 01:45:30,120 IN THE CASES WHERE IT DOES TO 2182 01:45:30,120 --> 01:45:31,120 LOWER THE ENERGY BARRIER IS WHAT 2183 01:45:31,120 --> 01:45:32,760 WE WANT TO BE ABLE TO DO FOR 2184 01:45:32,760 --> 01:45:34,320 THEM. 2185 01:45:34,320 --> 01:45:36,920 AND THEN HOPEFULLY THEY'LL TELL 2186 01:45:36,920 --> 01:45:38,040 THEIR FRIENDS AND WE'LL GET MORE 2187 01:45:38,040 --> 01:45:48,560 AND MORE SCIENTISTS THAT WAY. 2188 01:45:59,640 --> 01:46:01,280 >>IF YOU CAN IDENTIFY THIS IS 2189 01:46:01,280 --> 01:46:03,960 THE MODEL SYSTEM YOUR MOLECULE 2190 01:46:03,960 --> 01:46:05,640 LINKS TO, THIS IS A DISEASE 2191 01:46:05,640 --> 01:46:07,440 WHERE THE MOLECULE LINK TO 2192 01:46:07,440 --> 01:46:09,800 THEY'LL GET IT AND WILL ENGAGE. 2193 01:46:09,800 --> 01:46:20,360 IF YOU COME WITH, YOU KNOW, AN 2194 01:46:20,800 --> 01:46:26,640 ABSTRACT PHENOTYPE AND WITH HAVE 2195 01:46:26,640 --> 01:46:33,640 THE TOOLS NOW. 2196 01:46:33,640 --> 01:46:40,640 WE HAVE PHENOTYPES AND YOU HAVE 2197 01:46:40,640 --> 01:46:42,880 A FORMAT TO LINK INDIVIDUAL 2198 01:46:42,880 --> 01:46:45,520 PATIENT LEVEL ASSAYS TO THOSE 2199 01:46:45,520 --> 01:46:45,800 MOLECULES. 2200 01:46:45,800 --> 01:46:47,760 THAT'S A GAME CHANGER. 2201 01:46:47,760 --> 01:46:50,360 IF YOU GET YOUR SYSTEM 2202 01:46:50,360 --> 01:46:51,120 SOPHISTICATED ENOUGH AND HUGE 2203 01:46:51,120 --> 01:46:53,640 STEPS HAVE BEEN MADE, WE'RE 2204 01:46:53,640 --> 01:46:55,840 STILL NOT AT THE STAGE TO FULLY 2205 01:46:55,840 --> 01:46:57,400 REPLACE THE ANIMAL MODEL SYSTEM. 2206 01:46:57,400 --> 01:47:00,760 THAT'S THE BIGGEST POINT AND 2207 01:47:00,760 --> 01:47:02,480 WHERE I THINK IT FITS NICELY 2208 01:47:02,480 --> 01:47:04,280 INTO AND IF YOU CAN CORRECT THE 2209 01:47:04,280 --> 01:47:06,760 MODEL SYSTEMS AND IDEALLY NOT 2210 01:47:06,760 --> 01:47:10,880 ONE-OFFS ONLY, IF YOU ESTABLISH 2211 01:47:10,880 --> 01:47:16,080 AN APPROACH OR PHILOSOPHY 2212 01:47:16,080 --> 01:47:18,120 BECAUSE YOUR PHILANTHROPICS ARE 2213 01:47:18,120 --> 01:47:20,280 LEARNING AND WE'LL FUND YOU BUT 2214 01:47:20,280 --> 01:47:25,640 AT LEAST GENERATE DATA SO THE 2215 01:47:25,640 --> 01:47:33,960 NEXT MOLECULE HAVE A MODEL 2216 01:47:33,960 --> 01:47:34,200 SYSTEM. 2217 01:47:34,200 --> 01:47:35,480 >>MAKE YOU'RE COMMENT AND WE'LL 2218 01:47:35,480 --> 01:47:37,200 PROCEED WITH OUR VOTING ON THE 2219 01:47:37,200 --> 01:47:38,760 CON SET. 2220 01:47:38,760 --> 01:47:45,640 >>THANK YOU, ANN. 2221 01:47:45,640 --> 01:47:53,640 I WANT TO PUSH A LITTLE BIT 2222 01:47:53,640 --> 01:47:56,240 ABOUT WHAT I THINK WOULD BE 2223 01:47:56,240 --> 01:47:59,360 GREAT IN THE CONTEXT OF 2224 01:47:59,360 --> 01:48:00,440 TRANSLATIONAL SCIENCE. 2225 01:48:00,440 --> 01:48:01,640 WOULDN'T THE BE GREAT TO HAVE A 2226 01:48:01,640 --> 01:48:06,680 MEASURE OF SUCCESS WHEN THE 2227 01:48:06,680 --> 01:48:11,920 DRUGS ARE DEVELOPED ONCE 2228 01:48:11,920 --> 01:48:13,960 PATIENTS ARE IDENTIFIED WITH THE 2229 01:48:13,960 --> 01:48:18,200 RARE DISEASES AND DRUGS 2230 01:48:18,200 --> 01:48:19,920 DEVELOPED ARE FOUND TO BE 2231 01:48:19,920 --> 01:48:25,120 EFFECTIVE AND IDENTIFIED AND WE 2232 01:48:25,120 --> 01:48:26,760 SHORTEN THE TIME BETWEEN WHEN 2233 01:48:26,760 --> 01:48:32,760 THEY ARE DIAGNOSED TO RECEIVING 2234 01:48:32,760 --> 01:48:37,560 THE TREATMENT. 2235 01:48:37,560 --> 01:48:40,120 IT'S IMPORTANT TO HAVE VISIONS 2236 01:48:40,120 --> 01:48:42,240 LIKE THAT WHEN PATIENTS BENEFIT 2237 01:48:42,240 --> 01:48:44,760 FROM THESE DEVELOPMENTS. 2238 01:48:44,760 --> 01:48:46,080 >>GREAT POINT. 2239 01:48:46,080 --> 01:48:47,720 IF WE CAN SHORTEN THE DIAGNOSTIC 2240 01:48:47,720 --> 01:48:49,920 ODYSSEY IT WILL MAKE A HUGE 2241 01:48:49,920 --> 01:49:00,160 DIFFERENCE. 2242 01:49:05,960 --> 01:49:07,480 >>IT FITS AND KEEP PUSHING. 2243 01:49:07,480 --> 01:49:11,560 THAT'S WHAT WE WANT TO DO. 2244 01:49:11,560 --> 01:49:12,320 GO AHEAD AND START WITH THE 2245 01:49:12,320 --> 01:49:19,520 CONCEPT VOTE. 2246 01:49:19,520 --> 01:49:19,960 THANK YOU. 2247 01:49:19,960 --> 01:49:20,280 ALL RIGHT. 2248 01:49:20,280 --> 01:49:23,160 IF THERE'S NO FURTHER 2249 01:49:23,160 --> 01:49:23,840 DISCUSSION, COULD WE HAVE A 2250 01:49:23,840 --> 01:49:25,640 MOTION TO APPROVE THE CONCEPT? 2251 01:49:25,640 --> 01:49:32,880 >>MOVE. 2252 01:49:32,880 --> 01:49:34,520 >>SECOND. 2253 01:49:34,520 --> 01:49:39,640 >>ALL IN FAVOR? 2254 01:49:39,640 --> 01:49:45,920 ANY OPPOSED? 2255 01:49:45,920 --> 01:49:48,280 ANY ABSTENTIONS AND NOT 2256 01:49:48,280 --> 01:49:50,280 SURPRISINGLY THE CONCEPT IS 2257 01:49:50,280 --> 01:49:50,520 APPROVED. 2258 01:49:50,520 --> 01:49:53,440 WE'LL NOW MOVE TO A BREAK -- 2259 01:49:53,440 --> 01:49:55,000 >>MAY I INTERRUPT QUICKLY. 2260 01:49:55,000 --> 01:49:59,080 I WANTED TO PULL OUT A COMMENT 2261 01:49:59,080 --> 01:50:00,560 ANNIE KENNEDY MADE WE DIDN'T GET 2262 01:50:00,560 --> 01:50:06,000 A CHANCE TO HIGHLIGHT ABOUT THE 2263 01:50:06,000 --> 01:50:07,600 STRATEGIC PLAN AND HOW TO INFUSE 2264 01:50:07,600 --> 01:50:10,160 THE 21st CENTURY CURES 2265 01:50:10,160 --> 01:50:10,920 DISCUSSION. 2266 01:50:10,920 --> 01:50:13,640 I WANTED TO GIVE ANNIE AN 2267 01:50:13,640 --> 01:50:14,760 OPPORTUNITY BEFORE WE TAKE A 2268 01:50:14,760 --> 01:50:17,280 BREAK TO CAPTURE THAT CORRECTLY. 2269 01:50:17,280 --> 01:50:18,680 WOULD YOU MIND HIGHLIGHTING THAT 2270 01:50:18,680 --> 01:50:19,680 COMMENT IN THE CHAT. 2271 01:50:19,680 --> 01:50:22,840 >>I'LL MAKE IT QUICK TO GET A 2272 01:50:22,840 --> 01:50:23,040 BREAK. 2273 01:50:23,040 --> 01:50:25,640 I WAS SUGGESTING AND REMINDING 2274 01:50:25,640 --> 01:50:27,280 PEOPLE AND PROBABLY A LOT OF 2275 01:50:27,280 --> 01:50:29,520 PEOPLE HERE WHO PARTICIPATED BUT 2276 01:50:29,520 --> 01:50:32,360 AS THE COMMUNITY AND CONGRESS 2277 01:50:32,360 --> 01:50:34,440 PREPARES FOR THE DRAFTING OF THE 2278 01:50:34,440 --> 01:50:37,120 21st CENTURY CURES LEGISLATION, 2279 01:50:37,120 --> 01:50:38,800 THERE WERE ROUNDTABLES CONVENED 2280 01:50:38,800 --> 01:50:41,600 THROUGHOUT THE NATION AND THERE 2281 01:50:41,600 --> 01:50:42,960 WAS A LOT OF WONDERFUL INSIGHT 2282 01:50:42,960 --> 01:50:44,320 AND MULTI-STAKEHOLDER 2283 01:50:44,320 --> 01:50:44,840 ROUNDTABLES. 2284 01:50:44,840 --> 01:50:47,520 THEY HAD PATIENTS AND PATIENT 2285 01:50:47,520 --> 01:50:49,640 ADVOCATES AND CLINICIANS AND 2286 01:50:49,640 --> 01:50:52,880 BENCH SCIENTISTS AND 2287 01:50:52,880 --> 01:50:54,920 TRANSLATIONAL SCIENTISTS AND 2288 01:50:54,920 --> 01:50:56,680 THOSE WHO ARE CLINICAL TRIALISTS 2289 01:50:56,680 --> 01:50:58,160 TALKING ABOUT OPPORTUNITIES FOR 2290 01:50:58,160 --> 01:50:59,280 INNOVATION WITHIN OUR ECO 2291 01:50:59,280 --> 01:50:59,520 SYSTEMS. 2292 01:50:59,520 --> 01:51:01,400 SO MY SUGGESTION WAS MAYBE TO GO 2293 01:51:01,400 --> 01:51:02,720 BACK AND LOOK AT SOME OF THE 2294 01:51:02,720 --> 01:51:03,840 PUBLICATIONS THAT CAME FROM THAT 2295 01:51:03,840 --> 01:51:05,960 AND SOME OF THE TRANSCRIPTS ALL 2296 01:51:05,960 --> 01:51:08,720 OF WHICH ARE PUBLIC AS WE THINK 2297 01:51:08,720 --> 01:51:10,200 ABOUT AN APPROACH TO THE 2298 01:51:10,200 --> 01:51:12,520 STRATEGIC PLANNING FOR NCATS 2299 01:51:12,520 --> 01:51:15,600 BECAUSE THERE'S DIRECT RELEVANCE 2300 01:51:15,600 --> 01:51:15,960 THERE. 2301 01:51:15,960 --> 01:51:18,240 THERE'S WONDERFUL THINGS TO MOVE 2302 01:51:18,240 --> 01:51:21,040 FORWARD IN 21st CENTURY CURES 2303 01:51:21,040 --> 01:51:22,680 AND THINGS THAT WEREN'T 2304 01:51:22,680 --> 01:51:23,800 APPLICABLE TO THE LEGISLATION 2305 01:51:23,800 --> 01:51:25,640 THAT MAY BE APPLICABLE TO THE 2306 01:51:25,640 --> 01:51:26,240 NCATS STRATEGIC PLAN AS YOU 2307 01:51:26,240 --> 01:51:28,000 THINK OF HOW TO APPROACH THIS. 2308 01:51:28,000 --> 01:51:29,640 >>BRILLIANT IDEA. 2309 01:51:29,640 --> 01:51:31,800 I WANTED TO MAKE SURE WE ALL 2310 01:51:31,800 --> 01:51:33,200 HEARD IT TOO IN CASE SOMEBODY 2311 01:51:33,200 --> 01:51:33,920 DIDN'T SEE IT IN THE CHAT. 2312 01:51:33,920 --> 01:51:36,360 THANK YOU FOR BRINGING THAT UP. 2313 01:51:36,360 --> 01:51:37,760 IT'S FANTASTIC. 2314 01:51:37,760 --> 01:51:41,400 WE'LL TAKE A LOOK AND SEE HOW TO 2315 01:51:41,400 --> 01:51:42,760 DO THAT. 2316 01:51:42,760 --> 01:51:43,600 ANNA, THANK YOU. 2317 01:51:43,600 --> 01:51:44,760 SORRY ABOUT THAT. 2318 01:51:44,760 --> 01:51:45,680 PLEASE GO AHEAD AND WE'LL 2319 01:51:45,680 --> 01:51:49,040 CONVENE FOR A BREAK. 2320 01:51:49,040 --> 01:51:50,640 >>GOOD AFTERNOON AND WELCOME 2321 01:51:50,640 --> 01:51:53,360 BACK TO THE NEXT PART OF THE. 2322 01:51:53,360 --> 01:51:56,240 SESSION. 2323 01:51:56,240 --> 01:51:59,120 I'M THE ACTING DEPUTY DIRECTOR. 2324 01:51:59,120 --> 01:52:00,720 JONI WAS CALLED AWAY AND WILL BE 2325 01:52:00,720 --> 01:52:01,480 BACK SHORTLY. 2326 01:52:01,480 --> 01:52:03,560 IN THE MEANTIME IT'S MY GREAT 2327 01:52:03,560 --> 01:52:05,920 PLEASURE TO INTRODUCE OUR GUEST, 2328 01:52:05,920 --> 01:52:07,400 DR. MIKE LAUER. 2329 01:52:07,400 --> 01:52:11,480 THE NIH DEPUTY DIRECTOR FOR 2330 01:52:11,480 --> 01:52:12,560 EXTRAMURAL RESEARCH. 2331 01:52:12,560 --> 01:52:17,760 HE SERVES AS THE PRINCIPAL 2332 01:52:17,760 --> 01:52:19,040 SCIENTIFIC DIRECTOR AND RELATE 2333 01:52:19,040 --> 01:52:23,080 TO THE SUBSTANCE, QUALITY AND 2334 01:52:23,080 --> 01:52:24,960 EFFECTIVENESS OF THE NIH 2335 01:52:24,960 --> 01:52:26,040 EXTRAMURAL RESEARCH PROGRAM AND 2336 01:52:26,040 --> 01:52:26,440 ADMINISTRATION. 2337 01:52:26,440 --> 01:52:28,600 TODAY MIKE WILL BE SHARING AN 2338 01:52:28,600 --> 01:52:32,840 UPDATE ON THE NIH DATA SHARING, 2339 01:52:32,840 --> 01:52:33,440 DATA MANAGEMENT AND SHARING 2340 01:52:33,440 --> 01:52:34,320 POLICY. 2341 01:52:34,320 --> 01:52:40,240 WELCOME, MIKE. 2342 01:52:40,240 --> 01:52:50,800 >>THANK YOU FOR THE OPPORTUNITY 2343 01:53:08,560 --> 01:53:10,040 TO BE HERE AND TO SPEAK WITH YOU 2344 01:53:10,040 --> 01:53:14,320 ABOUT THE DATA MANAGEMENT AND 2345 01:53:14,320 --> 01:53:15,600 SHARING POLICY. 2346 01:53:15,600 --> 01:53:17,760 I'VE GIVEN VARIOUS VERSIONS OF 2347 01:53:17,760 --> 01:53:18,760 THIS TALK BEFORE AND ALWAYS 2348 01:53:18,760 --> 01:53:20,160 TALKED ABOUT SOMETHING THAT WAS 2349 01:53:20,160 --> 01:53:25,720 GOING TO HAPPEN SOME TIME IN THE 2350 01:53:25,720 --> 01:53:27,280 FUTURE. 2351 01:53:27,280 --> 01:53:29,320 THE FUTURE IS NOW AND WE'RE AT 2352 01:53:29,320 --> 01:53:29,920 THE POINT WHERE THE POLICY HAS 2353 01:53:29,920 --> 01:53:37,080 BEEN IMPLEMENTED. 2354 01:53:37,080 --> 01:53:47,640 NOW DATA SHARING AND THE AND JOE 2355 01:53:49,840 --> 01:53:51,600 BIDEN HELPED LEAD THE 2356 01:53:51,600 --> 01:53:54,280 DEVELOPMENT OF THE CANCER MOON 2357 01:53:54,280 --> 01:53:56,760 SHOT AT NIH AND TALKED ABOUT 2358 01:53:56,760 --> 01:54:00,240 DATA SHARING AS A CORE COMPONENT 2359 01:54:00,240 --> 01:54:04,560 AND BY 2016 BY OVERWHELMING 2360 01:54:04,560 --> 01:54:07,120 BIPARTISAN MAJORITIES THE 21st 2361 01:54:07,120 --> 01:54:08,640 CENTURIES CURES ACT WAS SIGNED 2362 01:54:08,640 --> 01:54:12,080 AND PASSED BY PRESIDENT OBAMA. 2363 01:54:12,080 --> 01:54:15,920 IN THAT LAW THERE WAS A 2364 01:54:15,920 --> 01:54:17,760 STATEMENT THE NIH MY REQUIRE 2365 01:54:17,760 --> 01:54:22,360 RECIPIENTS OF AWARDS TO SHARE 2366 01:54:22,360 --> 01:54:32,880 SCIENTIFIC DATA TO THE EXTEND 2367 01:54:33,720 --> 01:54:35,760 AND THE IDEA IT'S IMPORTANT IS 2368 01:54:35,760 --> 01:54:46,000 IN STATUTE. 2369 01:54:48,720 --> 01:54:52,640 AND THE POLICY HAD BEEN 2370 01:54:52,640 --> 01:55:00,280 IMPLEMENTED IN 2003 AND REQUIRED 2371 01:55:00,280 --> 01:55:03,480 MANAGEMENT OF AWARDS FOR DIRECT 2372 01:55:03,480 --> 01:55:05,760 COSTS IN A GIVEN YEAR. 2373 01:55:05,760 --> 01:55:08,240 THERE WERE OTHER POLICIES PUT 2374 01:55:08,240 --> 01:55:11,320 INTO PLACE PERHAPS BEST KNOWN AS 2375 01:55:11,320 --> 01:55:13,720 THE 2014 NIH GENOMIC DATA 2376 01:55:13,720 --> 01:55:18,560 SHARING POLICY AND THERE'S BEEN 2377 01:55:18,560 --> 01:55:29,160 A NUMBER OF AND THE CURRENT 2378 01:55:29,160 --> 01:55:32,320 POLICY JUST IMPLEMENTED POLICY 2379 01:55:32,320 --> 01:55:34,920 GOES BACK MANY YEARS. 2380 01:55:34,920 --> 01:55:37,720 THE AGENCY HAS ISSUED TWO RFIs 2381 01:55:37,720 --> 01:55:41,480 REQUEST FOR INPUT AND ONE RFC, 2382 01:55:41,480 --> 01:55:43,120 REQUEST FOR COMMENTS AT VARIOUS 2383 01:55:43,120 --> 01:55:45,960 POINTS ALONG THE WAY BACK IN 2384 01:55:45,960 --> 01:55:49,360 2016, 2018 AND 2019. 2385 01:55:49,360 --> 01:55:52,000 THERE WAS A CONSULTATION WITH A 2386 01:55:52,000 --> 01:55:56,080 NUMBER OF OTHER UNITS WITHIN THE 2387 01:55:56,080 --> 01:55:56,800 U.S. GOVERNMENT AS WELL AS 2388 01:55:56,800 --> 01:55:57,480 TRIBAL CONSULTATION. 2389 01:55:57,480 --> 01:55:59,800 THE POLICY ITSELF WAS RELEASED 2390 01:55:59,800 --> 01:56:06,840 IN OCTOBER OF 2020 ALONG WITH 2391 01:56:06,840 --> 01:56:09,960 SUPPLEMENTARY DOCUMENTS. 2392 01:56:09,960 --> 01:56:11,760 AND IT WOULD BE INITIALLY 2393 01:56:11,760 --> 01:56:14,320 IMPLEMENTED IN JANUARY OF 2023 2394 01:56:14,320 --> 01:56:24,760 WHICH IS WHERE WE ARE NOW. 2395 01:56:26,720 --> 01:56:29,280 AND IT PRODUCES REPRODUCIBLE 2396 01:56:29,280 --> 01:56:29,880 RESEARCH THROUGH A VARIETY OF 2397 01:56:29,880 --> 01:56:40,000 WAYS. 2398 01:56:58,080 --> 01:57:03,400 THERE WAS SOMETHING DONE BY THE 2399 01:57:03,400 --> 01:57:12,840 CENTER BY OPEN SCIENCE. 2400 01:57:12,840 --> 01:57:16,880 AND THEY IDENTIFIED 193 2401 01:57:16,880 --> 01:57:17,760 EXPERIMENTS PUBLISHED IN HIGH 2402 01:57:17,760 --> 01:57:23,400 IMPACT PAPERS AND WANTED TO SEE 2403 01:57:23,400 --> 01:57:25,960 WHETHER OR NOT THEY COULD 2404 01:57:25,960 --> 01:57:26,640 REPLICATE THE RESULTS. 2405 01:57:26,640 --> 01:57:32,480 THEY COULD DO SOME AND NOT 2406 01:57:32,480 --> 01:57:32,720 OTHERS. 2407 01:57:32,720 --> 01:57:35,800 IN MANY CASE THE EFFECT SIZES 2408 01:57:35,800 --> 01:57:38,400 AND MAYBE THE EFFECT SIZES 2409 01:57:38,400 --> 01:57:40,040 TURNED OUT TO BE SMALLER THAN 2410 01:57:40,040 --> 01:57:40,480 INITIALLY REPORTED. 2411 01:57:40,480 --> 01:57:41,440 ALL THAT IS INTERESTING BUT FOR 2412 01:57:41,440 --> 01:57:47,200 THE PURPOSES OF THIS DISCUSSION, 2413 01:57:47,200 --> 01:57:48,880 ONE OF THE ASPECTS OF THE 2414 01:57:48,880 --> 01:57:56,400 PROJECT IS TO REACH OUT TO THE 2415 01:57:56,400 --> 01:58:00,240 AUTHORS TO THE ORIGINAL PAPERS 2416 01:58:00,240 --> 01:58:02,160 AND GET ORIGINAL DATA IN 2417 01:58:02,160 --> 01:58:04,280 DESIGNING THE REPLICATION 2418 01:58:04,280 --> 01:58:04,600 EXPERIMENTS. 2419 01:58:04,600 --> 01:58:09,200 DESPITE CONTACTING THE AUTHORS 2420 01:58:09,200 --> 01:58:11,240 OF THE ORIGINAL PAPERS WE WERE 2421 01:58:11,240 --> 01:58:17,480 UNABLE TO OBTAIN THE DATA FOR 2422 01:58:17,480 --> 01:58:18,200 68%. 2423 01:58:18,200 --> 01:58:21,200 YOU MAY SAY IN THAT CASE THE 2424 01:58:21,200 --> 01:58:22,360 AUTHORS NEVER PROMISED TO SHARE 2425 01:58:22,360 --> 01:58:24,720 THE DATA ANY WAY. 2426 01:58:24,720 --> 01:58:27,760 THIS IS FROM A PAPER IN EUROPE 2427 01:58:27,760 --> 01:58:29,680 THAT WAS REPORTED OUT EIGHT OR 2428 01:58:29,680 --> 01:58:30,640 NINE MONTHS AGO. 2429 01:58:30,640 --> 01:58:34,320 WHAT THEY DID WAS THEY REACHED 2430 01:58:34,320 --> 01:58:37,560 OUT TO AUTHORS WHO HAD PUT A 2431 01:58:37,560 --> 01:58:38,320 DATA AVAILABILITY STATEMENT IN 2432 01:58:38,320 --> 01:58:38,960 THE PAPER. 2433 01:58:38,960 --> 01:58:41,800 AND THERE WAS A DATA 2434 01:58:41,800 --> 01:58:43,000 AVAILABILITY STATEMENT THAT SAID 2435 01:58:43,000 --> 01:58:46,560 SOMETHING LIKE TE DATA WILL BE 2436 01:58:46,560 --> 01:58:56,120 MADE AVAILABLE. 2437 01:58:56,120 --> 01:58:59,120 AND THEY WERE ONLY TO GET DATA 2438 01:58:59,120 --> 01:59:00,840 FROM 7% OF THE AUTHORS. 2439 01:59:00,840 --> 01:59:04,640 SO BOTH OF THESE STORIES ARE 2440 01:59:04,640 --> 01:59:05,680 RATHER DISCOURAGING. 2441 01:59:05,680 --> 01:59:16,120 HERE'S A STORY ENCOURAGING. 2442 01:59:16,120 --> 01:59:26,600 AND I SAW THEY HAD A DATA 2443 01:59:29,880 --> 01:59:31,000 REPOSITORY BEFORE THEN BUT THEY 2444 01:59:31,000 --> 01:59:35,080 TOOK IT TO A HIGHER LEVEL AND 2445 01:59:35,080 --> 01:59:37,840 MADE IT MORE SYSTEMATIZED AND 2446 01:59:37,840 --> 01:59:41,560 COLLECTED DATA FROM A VARIETY OF 2447 01:59:41,560 --> 01:59:42,920 DIFFERENT KINDS OF STUDIES. 2448 01:59:42,920 --> 01:59:47,000 AMONG THE STUDIES THEY COLLECTED 2449 01:59:47,000 --> 01:59:48,720 DATA FOR WERE CERTAIN CLINICAL 2450 01:59:48,720 --> 01:59:51,240 TRIALS THAT WERE FUNDED BY THE 2451 01:59:51,240 --> 01:59:51,480 INSTITUTE. 2452 01:59:51,480 --> 01:59:53,040 THEY WANTED TO SEE WHAT HAPPENED 2453 01:59:53,040 --> 01:59:55,800 TO THE DATA WE'RE NOW BEING MADE 2454 01:59:55,800 --> 02:00:02,280 AVAILABLE TO OUTSIDE RESEARCHERS 2455 02:00:02,280 --> 02:00:04,760 AND FOUND FOR 100 OF THE 2456 02:00:04,760 --> 02:00:10,000 CLINICAL TRIALS AT THE TIME OF 2457 02:00:10,000 --> 02:00:14,360 THE STUDY DATA WERE REQUESTED 2458 02:00:14,360 --> 02:00:18,400 FOR THEM AND FROM THE TIME TRAIL 2459 02:00:18,400 --> 02:00:23,400 DATA WERE MADE UNTIL THE FIRST 2460 02:00:23,400 --> 02:00:26,320 REQUEST WAS 235 DAYS. 2461 02:00:26,320 --> 02:00:36,680 LESS THAN NINE MONTHS. 2462 02:00:48,000 --> 02:00:53,080 AN THERE WERE CITATION VALUES ON 2463 02:00:53,080 --> 02:00:56,120 PAR WITH NHLBI FUNDED PAPERS. 2464 02:00:56,120 --> 02:00:59,680 I WASN'T INVOLVED IN THE STUDY 2465 02:00:59,680 --> 02:01:03,040 OR AN AUTHOR OF THE STUDY BUT 2466 02:01:03,040 --> 02:01:08,400 WHEN THE DATA REPOSITORY WAS SET 2467 02:01:08,400 --> 02:01:18,920 UP AND I'M A CARDIOLOGIST BY 2468 02:01:19,480 --> 02:01:22,360 BACKGROUND AND I REQUESTED DATA 2469 02:01:22,360 --> 02:01:24,880 FROM AN EPIDEMIOLOGY STUDY AND 2470 02:01:24,880 --> 02:01:26,320 TO MY AMAZEMENT IT WASN'T THAT 2471 02:01:26,320 --> 02:01:28,120 HARD. 2472 02:01:28,120 --> 02:01:29,880 AND I WAS ABLE TO GET THE DATA 2473 02:01:29,880 --> 02:01:35,040 AND LOOK AT THE DATA AND 2474 02:01:35,040 --> 02:01:38,560 UNDERSTAND IT AND WE HAVE PAPERS 2475 02:01:38,560 --> 02:01:40,080 FROM THE FIRST DATA REQUEST AND 2476 02:01:40,080 --> 02:01:43,080 DID THAT FOR AT LEAST ONE OTHER 2477 02:01:43,080 --> 02:01:50,320 STUDY WHICH LED TO PAPERS BEING 2478 02:01:50,320 --> 02:02:00,480 PUBLIS 2479 02:02:19,000 --> 02:02:21,040 PUBLISHED AND I WORKED WITH SOME 2480 02:02:21,040 --> 02:02:22,520 OF THE ORIGINAL SCIENTISTS. 2481 02:02:22,520 --> 02:02:32,840 THAT'S GOOD NEWS. 2482 02:02:44,640 --> 02:02:49,880 AND IT'S PORE -- MORE LIKELY TO 2483 02:02:49,880 --> 02:02:52,440 BE TRUSTED FROM AN INDEPENDENT 2484 02:02:52,440 --> 02:02:53,920 COMMITTEE AND LESS SO FUNDED BY 2485 02:02:53,920 --> 02:02:55,320 THE FEDERAL GOVERNMENT AND NOT 2486 02:02:55,320 --> 02:02:58,320 LUCKY TO BE TRUSTED FUNDED BY 2487 02:02:58,320 --> 02:03:02,000 INDUSTRY. 2488 02:03:02,000 --> 02:03:04,600 AND NOW TO THE POLICY ITSELF. 2489 02:03:04,600 --> 02:03:07,400 IN SOME RESPECTS IT'S SIMPLE. 2490 02:03:07,400 --> 02:03:09,320 WHEN AN APPLICATION IS SUBMITTED 2491 02:03:09,320 --> 02:03:10,600 TO THE NIH IT HAS TO BE 2492 02:03:10,600 --> 02:03:11,880 COMPANIED BY A DATA MANAGEMENT 2493 02:03:11,880 --> 02:03:14,160 AND SHARING PLAN. 2494 02:03:14,160 --> 02:03:16,840 THEN ONCE THAT PLAN IS APPROVED, 2495 02:03:16,840 --> 02:03:17,880 THEN THERE NEEDS TO BE 2496 02:03:17,880 --> 02:03:20,960 COMPLIANCE WITH THE PLAN. 2497 02:03:20,960 --> 02:03:23,120 AND THIS POLICY REQUIRING DATA 2498 02:03:23,120 --> 02:03:24,280 MANAGEMENT AND SHARING PLANS 2499 02:03:24,280 --> 02:03:26,160 BECAME EFFECTIVE YESTERDAY. 2500 02:03:26,160 --> 02:03:30,520 SO IT'S EFFECTIVE FOR ALL 2501 02:03:30,520 --> 02:03:34,800 APPLICATIONS OR RELEVANT 2502 02:03:34,800 --> 02:03:36,320 APPLICATIONS AND SUBMITTED 2503 02:03:36,320 --> 02:03:38,600 JANUARY 25, 2023 AND LATER. 2504 02:03:38,600 --> 02:03:40,240 NOW, HAVING SAID THIS WAS FAIRLY 2505 02:03:40,240 --> 02:03:42,560 SIMPLE, THERE ARE A NUMBER OF 2506 02:03:42,560 --> 02:03:42,800 DETAILS. 2507 02:03:42,800 --> 02:03:44,440 ONE QUESTION IS WHAT EXACTLY DO 2508 02:03:44,440 --> 02:03:45,080 WE MEAN BY DATA. 2509 02:03:45,080 --> 02:03:46,920 OF COURSE WE HAVE A DEFINITION 2510 02:03:46,920 --> 02:03:47,560 FOR THAT. 2511 02:03:47,560 --> 02:03:53,960 WE DEFINE IT AS RECORDED FACTUAL 2512 02:03:53,960 --> 02:03:56,760 MATERIAL TO VALIDATE AND 2513 02:03:56,760 --> 02:03:58,160 REPLICATE FINDINGS THEY'RE USED 2514 02:03:58,160 --> 02:04:01,720 TO SUPPORT SCHOLARLY 2515 02:04:01,720 --> 02:04:02,040 PUBLICATIONS. 2516 02:04:02,040 --> 02:04:04,240 IT DOESN'T INCLUDE LAB NOTEBOOKS 2517 02:04:04,240 --> 02:04:09,920 OR OBJECTS OR CASE REPORT FORMS 2518 02:04:09,920 --> 02:04:11,480 OR PRELIMINARY ANALYSES. 2519 02:04:11,480 --> 02:04:14,320 AND ONE INTERESTING EXERCISE WE 2520 02:04:14,320 --> 02:04:17,920 WENT THROUGH WHEN WE OBTAINED 2521 02:04:17,920 --> 02:04:20,000 SHARED DATA FROM NHLBI WE 2522 02:04:20,000 --> 02:04:22,360 ATTEMPTED TO REPLICATE THE 2523 02:04:22,360 --> 02:04:22,920 FINDINGS REPORTED IN THE 2524 02:04:22,920 --> 02:04:24,040 ORIGINAL PAPERS. 2525 02:04:24,040 --> 02:04:26,280 IT WASN'T WE HAD ANY REASON TO 2526 02:04:26,280 --> 02:04:27,800 BELIEVE THERE WERE PROBLEMS BUT 2527 02:04:27,800 --> 02:04:29,880 IT WAS OUR WAY OF DETERMINING 2528 02:04:29,880 --> 02:04:34,320 WHETHER OR NOT WE ACTUALLY 2529 02:04:34,320 --> 02:04:34,880 UNDERSTOOD THE DATA WE HAD. 2530 02:04:34,880 --> 02:04:36,080 AND TO SEE IF WE CAN COME UP 2531 02:04:36,080 --> 02:04:37,560 WITH THE SAME NUMBERS THAT 2532 02:04:37,560 --> 02:04:38,400 APPEARED IN THE PAPERS. 2533 02:04:38,400 --> 02:04:42,520 THAT ALONE WAS ALSO A REALLY 2534 02:04:42,520 --> 02:04:45,360 GOOD EXERCISE IN AND OF ITSELF. 2535 02:04:45,360 --> 02:04:47,200 THIS APPLIES TO RESEARCH THAT 2536 02:04:47,200 --> 02:04:48,080 GENERATES DATA. 2537 02:04:48,080 --> 02:04:50,600 TRAINING A FELLOWSHIP 2538 02:04:50,600 --> 02:04:53,880 CONSTRUCTION, CONFERENCE AWARDS 2539 02:04:53,880 --> 02:04:58,080 DO NOT ARE NOT APPLICABLE AND 2540 02:04:58,080 --> 02:04:59,280 DATA SHOULD BE SHARED NO LATER 2541 02:04:59,280 --> 02:05:02,880 THAN THE TIME OF PUBLICATION AND 2542 02:05:02,880 --> 02:05:05,440 FOR DATA THAT ARE NOT 2543 02:05:05,440 --> 02:05:06,920 ACCOMPANIED BY PUBLICATION WOULD 2544 02:05:06,920 --> 02:05:08,680 BE THE END OF THE AWARD. 2545 02:05:08,680 --> 02:05:11,920 THE GENERAL DEFAULT VIEW IS DATA 2546 02:05:11,920 --> 02:05:12,960 SHARING SHOULD BE MAXIMIZED. 2547 02:05:12,960 --> 02:05:20,200 ALL DATA NEEDS TO BE MANAGE D NT 2548 02:05:20,200 --> 02:05:22,280 ALL DATA NEEDS TO BE SHARED AND 2549 02:05:22,280 --> 02:05:23,560 WE'RE ASKING FOR PLANS THAT 2550 02:05:23,560 --> 02:05:25,040 DESCRIBE HOW THE DATA WILL BE 2551 02:05:25,040 --> 02:05:26,760 MANAGED AND SHARED IN A 2552 02:05:26,760 --> 02:05:28,560 RESPONSIBLE WAY AND ONE OF THE 2553 02:05:28,560 --> 02:05:31,880 KEY POINTS IS THAT THIS IS A 2554 02:05:31,880 --> 02:05:32,280 PROSPECTIVE PROCESS. 2555 02:05:32,280 --> 02:05:34,800 WE'RE ASKING FOR PLANS AT THE 2556 02:05:34,800 --> 02:05:36,320 TIME OF APPLICATION. 2557 02:05:36,320 --> 02:05:38,520 NOT AFTER THE DATA HAS BEEN 2558 02:05:38,520 --> 02:05:40,000 GENERATED BUT BEFORE THE DATA IS 2559 02:05:40,000 --> 02:05:41,920 GENERATED HOW ARE YOU THINKING 2560 02:05:41,920 --> 02:05:43,720 ABOUT IT. 2561 02:05:43,720 --> 02:05:46,600 NOT ALL DATA NEEDS TO BE SHARED 2562 02:05:46,600 --> 02:05:50,120 AND THERE ARE JUSTIFIABLE, 2563 02:05:50,120 --> 02:05:52,680 ETHICAL, LEGAL AND TECHNICAL S 2564 02:05:52,680 --> 02:05:54,840 AND THERE MAY BE PRIVACY OR 2565 02:05:54,840 --> 02:05:56,960 SAFETY ISSUES OR RELEVANT STATE, 2566 02:05:56,960 --> 02:05:58,560 LOCAL TRIBAL LAWS OR FEDERAL 2567 02:05:58,560 --> 02:06:01,200 LAWS EVEN. 2568 02:06:01,200 --> 02:06:02,840 THERE MAY BE OTHER KINDS OF 2569 02:06:02,840 --> 02:06:07,440 RESTRICTIONS WITH THIRD PARTIES. 2570 02:06:07,440 --> 02:06:08,920 THIS IS ALL UNDERSTOOD. 2571 02:06:08,920 --> 02:06:10,280 THIS WOULD BE PART OF THE DATA 2572 02:06:10,280 --> 02:06:11,960 MANAGEMENT SHARING PLAN. 2573 02:06:11,960 --> 02:06:14,320 THERE MAY BE A STATEMENT THAT 2574 02:06:14,320 --> 02:06:16,520 CERTAIN DATA WILL NOT BE SHARED 2575 02:06:16,520 --> 02:06:17,520 FOR THE FOLLOWING REASONS AND 2576 02:06:17,520 --> 02:06:20,440 THAT'S A CONVERSATION THE 2577 02:06:20,440 --> 02:06:27,040 APPLICANT WOULD HAVE WITH NIH. 2578 02:06:27,040 --> 02:06:28,840 REASONS NOT TO IS THE DATA ARE 2579 02:06:28,840 --> 02:06:30,720 SMALL OR UNINTERESTING OR WE 2580 02:06:30,720 --> 02:06:31,160 THINK THE DATA ARE 2581 02:06:31,160 --> 02:06:38,080 UNINTERESTING. 2582 02:06:38,080 --> 02:06:40,040 OR NOT THOUGHT TO HAVE 2583 02:06:40,040 --> 02:06:41,320 SUITABILITY AND THERE'S ISSUES 2584 02:06:41,320 --> 02:06:46,720 WITH TRIBAL SOVEREIGNTY AND THE 2585 02:06:46,720 --> 02:06:48,320 SBIR AND NSTR PROGRAM. 2586 02:06:48,320 --> 02:06:52,240 TO HELP THE COMMUNITY ADDRESS 2587 02:06:52,240 --> 02:06:55,840 THIS LAST APRIL WE RELEASED A 2588 02:06:55,840 --> 02:06:57,640 NEW WEBSITE CALLED 2589 02:06:57,640 --> 02:07:00,320 SHARING.NIH.gov AND SERVE AS A 2590 02:07:00,320 --> 02:07:08,560 CENTRAL SOURCE OF GUIDANCE. 2591 02:07:08,560 --> 02:07:09,600 THERE'S INFORMATION ABOUT MODEL 2592 02:07:09,600 --> 02:07:14,680 ORGANISMS AND RESEARCH TOOLS. 2593 02:07:14,680 --> 02:07:19,640 IT'S A HIGHLY DYNAMIC LIVING 2594 02:07:19,640 --> 02:07:22,320 WEBSITE AND THIS PARTICULAR 2595 02:07:22,320 --> 02:07:25,360 PICTURE I TOOK A COUPLE DAYS AGO 2596 02:07:25,360 --> 02:07:27,040 BECAUSE IT SAYS THERE'S FEATURED 2597 02:07:27,040 --> 02:07:30,280 NEWS AND EVENTS AND CHECK OUT 2598 02:07:30,280 --> 02:07:33,040 OUR DMS PLANT AND VIEW MORE AND 2599 02:07:33,040 --> 02:07:38,600 I'LL TALK ABOUT THAT IN A 2600 02:07:38,600 --> 02:07:39,080 SECOND. 2601 02:07:39,080 --> 02:07:41,000 THERE'S RESOURCES FOR DIFFERENT 2602 02:07:41,000 --> 02:07:41,880 KINDS OF DATA. 2603 02:07:41,880 --> 02:07:44,120 DIFFERENT KINDS OF SHARING I 2604 02:07:44,120 --> 02:07:44,480 SHOULD SAY. 2605 02:07:44,480 --> 02:07:48,320 SCIENTIFIC DATA, GENOMIC, MODEL 2606 02:07:48,320 --> 02:07:52,400 ORGANISMS AND RULES RELATED TO 2607 02:07:52,400 --> 02:07:52,960 CLINICAL TRIALS. 2608 02:07:52,960 --> 02:07:56,480 WE HAVE -- I COULD CALL IT A 2609 02:07:56,480 --> 02:07:56,720 WIZARD. 2610 02:07:56,720 --> 02:07:59,960 WHICH POLICIES APPLY TO MY 2611 02:07:59,960 --> 02:08:00,520 RESEARCH. 2612 02:08:00,520 --> 02:08:03,000 LEADS YOU THROUGH A SERIES OF 2613 02:08:03,000 --> 02:08:04,440 QUESTIONS AND THIS HELPS YOU 2614 02:08:04,440 --> 02:08:06,520 FIGURE OUT WHAT IS RELEVANT TO 2615 02:08:06,520 --> 02:08:08,160 AN APPLICATION YOU MAY BE 2616 02:08:08,160 --> 02:08:08,440 SENDING IN. 2617 02:08:08,440 --> 02:08:10,160 WE HAVE RESOURCES ON DIFFERENT 2618 02:08:10,160 --> 02:08:15,800 APPROACHES TO SHARING DATA ON 2619 02:08:15,800 --> 02:08:21,600 REPOSITO 2620 02:08:21,600 --> 02:08:26,320 REPOSITORIES HOW IT WRITE A PLAN 2621 02:08:26,320 --> 02:08:29,400 AND BUDGET. 2622 02:08:29,400 --> 02:08:37,320 WE RECOGNIZE THIS IS NOT FREE. 2623 02:08:37,320 --> 02:08:39,040 WHEN THE ORIGINAL POLICY WAS 2624 02:08:39,040 --> 02:08:45,560 RELEASED IN OCTOBER, 2020 WE 2625 02:08:45,560 --> 02:08:51,440 INCLUDED SUPPLEMENTARY DUMES AND 2626 02:08:51,440 --> 02:08:52,480 WE TALKED ABOUT A SHARING PLAN 2627 02:08:52,480 --> 02:08:54,080 AND THAT HAS NOT CHANGED SINCE 2628 02:08:54,080 --> 02:08:54,880 THAT TIME. 2629 02:08:54,880 --> 02:08:56,560 WE HAVE PUT OUT ADDITIONAL 2630 02:08:56,560 --> 02:08:57,480 RESOURCES ABOUT WHAT TYPES OF 2631 02:08:57,480 --> 02:09:00,000 THINGS WE'RE LOOKING FOR IN A 2632 02:09:00,000 --> 02:09:01,400 DATA MANAGEMENT SHARING PLAN AND 2633 02:09:01,400 --> 02:09:08,600 THEY ARE TAKING STRAIGHT FROM 2634 02:09:08,600 --> 02:09:10,680 THE DOCUMENT RELEASED AND WE 2635 02:09:10,680 --> 02:09:11,920 ASKED ABOUT DATA TYPE AND 2636 02:09:11,920 --> 02:09:16,200 RELATED TOOL, SOFTWARE AND CODE 2637 02:09:16,200 --> 02:09:17,440 THAT MAY BE AVAILABLE AND WHAT 2638 02:09:17,440 --> 02:09:18,760 STANDARDS ARE IN PLACE, WHAT 2639 02:09:18,760 --> 02:09:22,400 STEPS ARE GOING TO BE TAKEN TO 2640 02:09:22,400 --> 02:09:23,920 PRESERVE THE DATA AND HOW WILL 2641 02:09:23,920 --> 02:09:28,280 ACCESS OCCUR AND WHAT TIME LINES 2642 02:09:28,280 --> 02:09:30,080 ARE YOU ANTICIPATING AND ARE 2643 02:09:30,080 --> 02:09:31,720 THERE ACCESS IN CONSIDERATIONS 2644 02:09:31,720 --> 02:09:34,320 FOR EXAMPLE, WILL THE DATA BE 2645 02:09:34,320 --> 02:09:38,080 MADE SIMPLY PUBLICLY AVAILABLE 2646 02:09:38,080 --> 02:09:40,360 TO ANYONE WHO WANTS IT AND N 2647 02:09:40,360 --> 02:09:44,760 HANES AND GO ON THE WEBSITE AND 2648 02:09:44,760 --> 02:09:45,600 DOWNLOAD THE DATA AND YOU DON'T 2649 02:09:45,600 --> 02:09:50,280 HAVE TO TALK TO ANYBODY OR MAYBE 2650 02:09:50,280 --> 02:09:54,320 LIKE THE NHLBI DATA REPOSITORY 2651 02:09:54,320 --> 02:10:00,320 WHERE I HAD TO ASK FOR THE DATA 2652 02:10:00,320 --> 02:10:03,680 AND GOT IT AND THINK ABOUT DATA 2653 02:10:03,680 --> 02:10:04,400 THAT'S SENSITIVE OR IDENTIFIABLE 2654 02:10:04,400 --> 02:10:05,520 LIKE GENOMIC DATA. 2655 02:10:05,520 --> 02:10:08,960 WE HAVE CONTROLLED ACCESS WHERE 2656 02:10:08,960 --> 02:10:10,360 MANY STEPS HAVE TO BE TAKEN 2657 02:10:10,360 --> 02:10:13,160 BEFORE ONE CAN GET ACCESS TO THE 2658 02:10:13,160 --> 02:10:13,360 DATA. 2659 02:10:13,360 --> 02:10:16,760 AND THEN WE ALSO ASK HOW THE 2660 02:10:16,760 --> 02:10:21,240 DATA MANAGEMENT WILL BE 2661 02:10:21,240 --> 02:10:21,520 OVERSEEN. 2662 02:10:21,520 --> 02:10:23,280 ONE ONE WE HEARD FROM THE 2663 02:10:23,280 --> 02:10:25,120 COMMUNITY A LOT WAS A DESIRE TO 2664 02:10:25,120 --> 02:10:25,600 SEE SAMPLE PLANS. 2665 02:10:25,600 --> 02:10:27,920 THIS IS A BIT OF A MIXED BAG 2666 02:10:27,920 --> 02:10:28,320 HERE. 2667 02:10:28,320 --> 02:10:30,840 ON THE ONE HAND SAMPLE PLANS, 2668 02:10:30,840 --> 02:10:33,880 HOPEFULLY WILL HELP PEOPLE WRITE 2669 02:10:33,880 --> 02:10:36,280 THEIR OWN PLANS AND WRITE DECENT 2670 02:10:36,280 --> 02:10:38,400 PLANS BUT ON THE OTHER HAND WE 2671 02:10:38,400 --> 02:10:40,880 DON'T WANT TO SAY IT'S THE ONLY 2672 02:10:40,880 --> 02:10:49,320 ACCEPTABLE PLAN OUT THERE. 2673 02:10:49,320 --> 02:10:54,960 AND THESE ARE SOME SAMPLE PLANS 2674 02:10:54,960 --> 02:10:57,320 WE HAVE ALREADY I ANTICIPATE 2675 02:10:57,320 --> 02:11:01,120 OVER TIME WE'LL POST MORE SAMPLE 2676 02:11:01,120 --> 02:11:07,960 PLANS AND I'M ANTICIPATING AND 2677 02:11:07,960 --> 02:11:13,160 WITH THE PERMISSION OF THE 2678 02:11:13,160 --> 02:11:14,400 SCIENTISTS, WE'LL POST THEIR 2679 02:11:14,400 --> 02:11:18,320 PLANS HOPEFULLY APPROPRIATELY 2680 02:11:18,320 --> 02:11:22,360 REDACTED AND POST THE PLANS AS 2681 02:11:22,360 --> 02:11:24,320 SAMPLES OTHERS CAN USE TO PUT 2682 02:11:24,320 --> 02:11:34,680 THE PLAYERS TOGETHER. 2683 02:11:42,720 --> 02:11:44,480 WE PROVIDE GUIDANCE IN SELECTING 2684 02:11:44,480 --> 02:11:54,160 THE REPOS -- REPOSITORY IS 2685 02:11:54,160 --> 02:11:57,480 EASY. 2686 02:11:57,480 --> 02:12:00,440 THE FOA MAY SAY YOU MUST STATE 2687 02:12:00,440 --> 02:12:04,960 DATA WILL BE DEPOSITED IN THE X, 2688 02:12:04,960 --> 02:12:08,840 Y, Z REPOSITORY. 2689 02:12:08,840 --> 02:12:10,520 IT MAKES THE DECISION EASY. 2690 02:12:10,520 --> 02:12:12,320 THERE'S MANY KINDS OF 2691 02:12:12,320 --> 02:12:14,400 REPOSITORIES OUT THERE. 2692 02:12:14,400 --> 02:12:15,280 SOME ARE GENERALIZED AND 2693 02:12:15,280 --> 02:12:19,960 SPECIALIZED. 2694 02:12:19,960 --> 02:12:23,240 WE HAVE A LIST OF NIH 2695 02:12:23,240 --> 02:12:24,400 REPOSITORIES MANAGED BY OUR 2696 02:12:24,400 --> 02:12:24,960 INSTITUTES. 2697 02:12:24,960 --> 02:12:28,840 MOST OF THESE ARE SPECIALIST 2698 02:12:28,840 --> 02:12:31,960 REPOSITORIES. 2699 02:12:31,960 --> 02:12:35,880 AN EXAMPLE OF ONE DB GAP IS BEST 2700 02:12:35,880 --> 02:12:40,040 KNOWN AND BIO LINK. 2701 02:12:40,040 --> 02:12:43,400 IT'S THE REPOSITORY NHLBI 2702 02:12:43,400 --> 02:12:48,320 MAINTAINS AND THE ONE AS AN 2703 02:12:48,320 --> 02:12:50,080 EXTERNAL EXTRAMURAL INVESTIGATOR 2704 02:12:50,080 --> 02:12:54,320 TOOK ADVANTAGE OF AND USED IT TO 2705 02:12:54,320 --> 02:12:57,520 CONDUCT SOME RESEARCH. 2706 02:12:57,520 --> 02:13:03,240 WE ARE AWARE THAT A NUMBER OF 2707 02:13:03,240 --> 02:13:04,200 INSTITUTIONS INCLUDING LIBRARIES 2708 02:13:04,200 --> 02:13:07,040 ARE SETTING UP REPOSITORIES OR 2709 02:13:07,040 --> 02:13:10,000 ALREADY SETTING THEM UP AND ARE 2710 02:13:10,000 --> 02:13:10,320 GOOD. 2711 02:13:10,320 --> 02:13:12,360 THEY MEET INSTITUTIONAL NEEDS 2712 02:13:12,360 --> 02:13:15,240 AND AWARE OF THE NEEDS OF 2713 02:13:15,240 --> 02:13:18,840 GOVERNMENT AGENCIES LITHE NSF OR 2714 02:13:18,840 --> 02:13:22,360 NIH THAT HAVE DATA SHARING 2715 02:13:22,360 --> 02:13:26,560 REQUIREMENTS AND DEAL WITH 2716 02:13:26,560 --> 02:13:26,840 SECURITY. 2717 02:13:26,840 --> 02:13:29,360 PUB MED CENTRAL CAN BE USED AS A 2718 02:13:29,360 --> 02:13:29,680 REPOSITORY. 2719 02:13:29,680 --> 02:13:31,520 YOU PUBLISH A PAPER AND AS 2720 02:13:31,520 --> 02:13:33,040 REQUIRED THE PAPER IS POSTED IN 2721 02:13:33,040 --> 02:13:34,960 PUB MED CENTRAL. 2722 02:13:34,960 --> 02:13:36,360 IF THE DATA THAT GOES WITH THE 2723 02:13:36,360 --> 02:13:37,960 PAPER IS LESS THAN A CERTAIN 2724 02:13:37,960 --> 02:13:39,280 SIZE AND I DON'T REMEMBER WHAT, 2725 02:13:39,280 --> 02:13:41,000 BUT LESS THAN A CERTAIN SIZE, 2726 02:13:41,000 --> 02:13:49,560 YOU CAN POST THE DETE THERE. 2727 02:13:49,560 --> 02:13:54,680 THESE ARE NOT NIH REPOSITORIES 2728 02:13:54,680 --> 02:13:58,240 AND THESE ARE REPOS TRIES THAT 2729 02:13:58,240 --> 02:14:00,320 ARE WIDELY USED IN THE 2730 02:14:00,320 --> 02:14:03,240 COMMUNITY. 2731 02:14:03,240 --> 02:14:07,960 BUDGET IS A BIG ISSUE. 2732 02:14:07,960 --> 02:14:09,760 WE ASK THAT PEOPLE THINK HOW 2733 02:14:09,760 --> 02:14:12,800 MUCH IS IT GOING TO COST TO MEET 2734 02:14:12,800 --> 02:14:14,720 THE CONDITIONS OF A DATA 2735 02:14:14,720 --> 02:14:15,320 MANAGEMENT SHARING PLAN. 2736 02:14:15,320 --> 02:14:19,000 WE OUTLINED WHAT KIND OF COSTS 2737 02:14:19,000 --> 02:14:22,640 ARE REASONABLE AND CAN BE 2738 02:14:22,640 --> 02:14:26,440 CONNECTED TO DIRECT COSTS AND 2739 02:14:26,440 --> 02:14:27,480 THERE'S OTHER THAT CONTINUE TO 2740 02:14:27,480 --> 02:14:30,640 BE MORE LINKED WITH INDIRECT 2741 02:14:30,640 --> 02:14:30,840 COSTS. 2742 02:14:30,840 --> 02:14:32,600 I SHOULD ALSO MENTION THE 2743 02:14:32,600 --> 02:14:34,000 NATIONAL LIBRARY OF MEDICINE 2744 02:14:34,000 --> 02:14:36,080 COMMISSIONED A STUDY WITH THE 2745 02:14:36,080 --> 02:14:37,360 NATIONAL ACADEMIES TO LOOK AT 2746 02:14:37,360 --> 02:14:39,560 THE ISSUE OF HOW MUCH DOES IT 2747 02:14:39,560 --> 02:14:43,720 COST TO SHARE DATA. 2748 02:14:43,720 --> 02:14:44,560 THIS IS HOW IT GOES. 2749 02:14:44,560 --> 02:14:46,520 THE PLAN IS SUBMITTED WITH THE 2750 02:14:46,520 --> 02:14:47,320 INITIAL APPLICATION. 2751 02:14:47,320 --> 02:14:48,600 THERE ARE TWO PARTS. 2752 02:14:48,600 --> 02:14:50,760 THE PLAN ITSELF, WHICH I BELIEVE 2753 02:14:50,760 --> 02:14:52,440 IS SUPPOSED TO BE TWO PAGES LONG 2754 02:14:52,440 --> 02:14:57,440 OR LESS. 2755 02:14:57,440 --> 02:14:58,360 AND THEN THERE'S ALSO 2756 02:14:58,360 --> 02:15:03,760 JUSTIFICATION FOR THE BUDGET. 2757 02:15:03,760 --> 02:15:05,000 WITHIN THE BUDGET JUSTIFICATION 2758 02:15:05,000 --> 02:15:06,360 YOU'RE SUPPOSED TO TALK ABOUT 2759 02:15:06,360 --> 02:15:08,920 THE DATA MANAGEMENT AND SHARING 2760 02:15:08,920 --> 02:15:11,080 PLAN AND THERE'S SUPPOSED TO BE 2761 02:15:11,080 --> 02:15:12,360 AN ENTRY TO HOW MUCH MONEY YOU 2762 02:15:12,360 --> 02:15:13,840 THINK YOU'LL NEED TO IMPLEMENT 2763 02:15:13,840 --> 02:15:14,480 THE DATA MANAGEMENT AND SHARING 2764 02:15:14,480 --> 02:15:19,800 PLAN. 2765 02:15:19,800 --> 02:15:22,160 THE PLAN WILL THEN BE ASSESSED 2766 02:15:22,160 --> 02:15:26,280 FOR THOSE TO BE FUNDED BY OUR 2767 02:15:26,280 --> 02:15:29,040 STAFF AND NIH STAFF AND ANY TIME 2768 02:15:29,040 --> 02:15:32,120 ALONG THE WAY IT CAN BE REVISED 2769 02:15:32,120 --> 02:15:34,880 AND PROGRESS REPORT ONE, TWO, 2770 02:15:34,880 --> 02:15:37,240 THREE YEARS LATER YOU CAN REVISE 2771 02:15:37,240 --> 02:15:39,720 THE PLAN AND WOULD REQUIRE 2772 02:15:39,720 --> 02:15:42,320 DISCUSSION WITH NIH STAFF AND 2773 02:15:42,320 --> 02:15:46,240 ONCE APPROVED IT BECOMES PART OF 2774 02:15:46,240 --> 02:15:48,360 THE TERM AND CONDITION OF THE 2775 02:15:48,360 --> 02:15:54,040 AWARD LIKE ANY OTHER. 2776 02:15:54,040 --> 02:15:55,000 THE INFORMATION ABOUT PROGRESS 2777 02:15:55,000 --> 02:15:58,160 IN MEETING THE PLAN SHOULD BE 2778 02:15:58,160 --> 02:15:58,800 INCLUDED IN ANNUAL PROGRESS 2779 02:15:58,800 --> 02:16:04,360 REPORTS AND FAILURE TO COMPLY IS 2780 02:16:04,360 --> 02:16:05,000 A PROBLEM. 2781 02:16:05,000 --> 02:16:07,600 THAT MAY AND IS CONSIDERED LIKE 2782 02:16:07,600 --> 02:16:08,440 ABE OTHER COMPLIANCE VIOLATION. 2783 02:16:08,440 --> 02:16:10,680 BY THE WAY, WE'RE THINKING IN 2784 02:16:10,680 --> 02:16:12,320 THIS PARTICULAR CASE WE MAY 2785 02:16:12,320 --> 02:16:14,040 LEARN ABOUT FAILURES TO COMPLY 2786 02:16:14,040 --> 02:16:15,280 FROM OTHER PEOPLE IN THE 2787 02:16:15,280 --> 02:16:16,600 RESEARCH COMMUNITY WHO WILL SAY, 2788 02:16:16,600 --> 02:16:18,760 LOOK, I TRIED TO GET ACCESS TO 2789 02:16:18,760 --> 02:16:20,560 THIS PARTICULAR DATA AND I'M NOT 2790 02:16:20,560 --> 02:16:22,360 ABLE TO GET ACCESS OR GIVEN A 2791 02:16:22,360 --> 02:16:25,920 HARD TIME OR WHATEVER. 2792 02:16:25,920 --> 02:16:29,480 THAT MAY BE A CUE TO US THERE'S 2793 02:16:29,480 --> 02:16:30,400 POTENTIALLY A PROBLEM. 2794 02:16:30,400 --> 02:16:35,280 WE KNOW THERE'S BEEN INTEREST IN 2795 02:16:35,280 --> 02:16:40,080 THE COMMUNITY AND THERE'S A 2796 02:16:40,080 --> 02:16:41,760 PAPER PUBLISHED IN CROSS 2797 02:16:41,760 --> 02:16:43,360 COMPUTATIONAL BIOLOGY BUT THE 2798 02:16:43,360 --> 02:16:46,320 CONTENT OF THE PAPER IS 2799 02:16:46,320 --> 02:16:50,320 APPLICABLE TO ANYTHING NOT JUST 2800 02:16:50,320 --> 02:16:51,800 COMPUTATIONAL TECHNOLOGY AND 2801 02:16:51,800 --> 02:16:53,760 LOOKING AT THE DATA MANAGEMENT 2802 02:16:53,760 --> 02:16:57,360 SHARING PLAN AND THIS CAME FROM 2803 02:16:57,360 --> 02:17:01,800 NORTHWESTERN UNIVERSITY. 2804 02:17:01,800 --> 02:17:07,040 IT'S A NICE PAPER WE'VE BEEN 2805 02:17:07,040 --> 02:17:08,800 ENGAGED IN EXTENSIVE OUTREACH. 2806 02:17:08,800 --> 02:17:15,160 THERE'S BEEN DOZENS OF WEBINARS, 2807 02:17:15,160 --> 02:17:16,640 SEMINARS, AND THAT WILL 2808 02:17:16,640 --> 02:17:17,800 CONTINUE. 2809 02:17:17,800 --> 02:17:21,320 THIS IS AN OPPORTUNITY TO THANK 2810 02:17:21,320 --> 02:17:23,440 THREE COLLEAGUES IN PARTICULAR, 2811 02:17:23,440 --> 02:17:26,520 THE OFFICE OF SCIENCE POLICY AND 2812 02:17:26,520 --> 02:17:29,400 JULIA FROM OUR OFFICE AND 2813 02:17:29,400 --> 02:17:30,840 EXTRAMURAL RESEARCH AND IN OUR 2814 02:17:30,840 --> 02:17:31,760 OFFICE OF EXTRAMURAL RESEARCH. 2815 02:17:31,760 --> 02:17:34,080 THE THREE HAVE BEEN WORKING ON 2816 02:17:34,080 --> 02:17:44,520 THIS TIRELESSLY FOR YEARS. 2817 02:17:48,360 --> 02:17:50,280 I KNOW YOU'RE AWARE OF THE 2818 02:17:50,280 --> 02:17:51,320 OFFICE OF SCIENCE AND TECHNOLOGY 2819 02:17:51,320 --> 02:17:56,240 POLICY MEMORANDUM PUT OUT LAST 2820 02:17:56,240 --> 02:17:56,480 AUGUST. 2821 02:17:56,480 --> 02:18:00,360 THIS MEMORANDUM WAS ENTITLED 2822 02:18:00,360 --> 02:18:01,560 ENSURING FREE IMMEDIATE AND 2823 02:18:01,560 --> 02:18:03,080 EQUITABLE ACCESS TO FEDERALLY 2824 02:18:03,080 --> 02:18:03,760 FUNDED RESEARCH. 2825 02:18:03,760 --> 02:18:07,240 THE PART THAT HAS DRAWN THE MOST 2826 02:18:07,240 --> 02:18:10,320 AMOUNT OF ATTENTION HAS BEEN ON 2827 02:18:10,320 --> 02:18:14,160 PUBLIC ACCESS. 2828 02:18:14,160 --> 02:18:18,280 REFERRING TO AND TO ARTICLES 2829 02:18:18,280 --> 02:18:21,280 PUBLISHED AND SUPPORTED BY THE 2830 02:18:21,280 --> 02:18:22,280 FEDERAL GOVERNMENT AND THE IDEA 2831 02:18:22,280 --> 02:18:23,840 IS SOME VERSION OF THOSE 2832 02:18:23,840 --> 02:18:26,320 ARTICLES SHOULD BE PUBLICLY 2833 02:18:26,320 --> 02:18:28,400 ACCESSIBLE WITHOUT EMBARGO AT 2834 02:18:28,400 --> 02:18:28,920 THE TIME OR SHORTLY AFTER 2835 02:18:28,920 --> 02:18:39,160 PUBLICATION. 2836 02:18:40,200 --> 02:18:41,800 THERE ARE TWO PARTS. 2837 02:18:41,800 --> 02:18:47,200 ONE IS ON THE DIGITAL PERSISTENT 2838 02:18:47,200 --> 02:18:47,880 IDENTIFIER. 2839 02:18:47,880 --> 02:18:50,000 HAVING DIGITAL IDENTIFIERS 2840 02:18:50,000 --> 02:18:51,240 CONNECTED TO ASPECTS OF RESEARCH 2841 02:18:51,240 --> 02:18:53,520 AND IDENTIFIERS TO GRANTS AND 2842 02:18:53,520 --> 02:18:55,560 PUBLICATIONS AND DATA SETS AND 2843 02:18:55,560 --> 02:18:57,560 TO PEOPLE. 2844 02:18:57,560 --> 02:19:00,560 AN EXAMPLE MIGHT BE THE ORCHID 2845 02:19:00,560 --> 02:19:10,640 I.D. 2846 02:19:15,280 --> 02:19:17,560 SCIENTIFIC DATA RESULT FROM 2847 02:19:17,560 --> 02:19:18,280 FEDERALLY FUNDED RESEARCH SHOULD 2848 02:19:18,280 --> 02:19:20,600 BE MADE FREELY AVAILABLE AND 2849 02:19:20,600 --> 02:19:22,360 PUBLICLY ACCESSIBLE BY DEFAULT 2850 02:19:22,360 --> 02:19:23,880 AT THE TIME OF PUBLICATION AND 2851 02:19:23,880 --> 02:19:25,880 SHOULD BE SUGGEST TO FEDERAL 2852 02:19:25,880 --> 02:19:27,680 AGENCY GUIDELINE FOR RESEARCH 2853 02:19:27,680 --> 02:19:28,880 RESPONSIBILITIES REGARDING DATA 2854 02:19:28,880 --> 02:19:29,560 MANAGEMENT AND SHARING PLANS. 2855 02:19:29,560 --> 02:19:34,320 I STARTED BY TALKING ABOUT THE 2856 02:19:34,320 --> 02:19:36,920 FACT THAT DATA SHARING HAS BEEN 2857 02:19:36,920 --> 02:19:39,520 PROMOTED AT THE HIGHEST LEVELS 2858 02:19:39,520 --> 02:19:40,880 OF GOVERNMENT INCLUDING FROM THE 2859 02:19:40,880 --> 02:19:42,320 WHITE HOUSE AND CONGRESS AND 2860 02:19:42,320 --> 02:19:46,320 HERE WE ARE SURFING BACK TO THE 2861 02:19:46,320 --> 02:19:47,600 WHITE HOUSE AGAIN AND IF THIS 2862 02:19:47,600 --> 02:19:50,280 STATEMENT CAME OUT IN A MEMO 2863 02:19:50,280 --> 02:19:51,840 LAST AUGUST ESSENTIALLY MATCHES 2864 02:19:51,840 --> 02:19:54,880 OUR DATA MANAGEMENT AND SHARING 2865 02:19:54,880 --> 02:19:57,640 POLICY AND WE FEEL WE CAN CHECK 2866 02:19:57,640 --> 02:19:58,440 THE BOX WE'VE DONE WHAT HAS BEEN 2867 02:19:58,440 --> 02:20:01,160 ASKED. 2868 02:20:01,160 --> 02:20:02,120 THANK YOU VERY MUCH FOR YOUR 2869 02:20:02,120 --> 02:20:02,720 ATTENTION TODAY. 2870 02:20:02,720 --> 02:20:05,640 HAPPY TO HEAR YOUR COMMENTS AND 2871 02:20:05,640 --> 02:20:08,080 QUESTIONS AND I HAVE HERE A LIST 2872 02:20:08,080 --> 02:20:12,200 OF A VARIETY OF RESOURCES BUT 2873 02:20:12,200 --> 02:20:14,320 PERHAPS THE MOST IMPORTANT 2874 02:20:14,320 --> 02:20:17,280 IMPORTANT RESOURCE IS 2875 02:20:17,280 --> 02:20:19,200 SHARING.NIH.gov AND IF YOU 2876 02:20:19,200 --> 02:20:20,000 HAVEN'T LOOKED AT IT ENCOURAGE 2877 02:20:20,000 --> 02:20:23,400 YOU TO DO SO. 2878 02:20:23,400 --> 02:20:24,520 TALE YOUR FRIENDS. 2879 02:20:24,520 --> 02:20:33,240 THANK YOU. 2880 02:20:33,240 --> 02:20:36,120 >>IT'S EXCITING TO SEE HOW YOU 2881 02:20:36,120 --> 02:20:38,040 COMPLIED THE INFORMATION AND 2882 02:20:38,040 --> 02:20:38,280 RESOURCES. 2883 02:20:38,280 --> 02:20:39,560 YOU DON'T WANT TO LEAN TOO MUCH 2884 02:20:39,560 --> 02:20:41,280 ON SAMPLE PLANS BUT THINK IT 2885 02:20:41,280 --> 02:20:44,000 WILL HELP PEOPLE VISUALIZE WHAT 2886 02:20:44,000 --> 02:20:46,320 THEY'RE TRYING TO DO AND WOULD 2887 02:20:46,320 --> 02:20:56,600 BE APPROPRIATE. 2888 02:21:25,560 --> 02:21:29,000 >>AND WITH THE OFFICE OF 2889 02:21:29,000 --> 02:21:31,760 SCIENCE POLICY AND MIKE'S OFFICE 2890 02:21:31,760 --> 02:21:33,840 THE OFFICE OF EXTRAMURAL 2891 02:21:33,840 --> 02:21:34,760 ACTIVITIES AS WELL AS THE OFFICE 2892 02:21:34,760 --> 02:21:38,280 OF EXTRAMURAL RESEARCH BECAUSE 2893 02:21:38,280 --> 02:21:40,360 THIS DOES AFFECT OUR INTRAMURAL 2894 02:21:40,360 --> 02:21:42,600 RESEARCHERS. 2895 02:21:42,600 --> 02:21:44,200 WE PUT TOGETHER A GROUP AT NCATS 2896 02:21:44,200 --> 02:21:45,480 FROM EACH OFFICE AND DIVISION 2897 02:21:45,480 --> 02:21:51,480 AND PROGRAM TO SHARE EXPERIENCES 2898 02:21:51,480 --> 02:21:52,760 AND WE PUT TOGETHER EDUCATIONAL 2899 02:21:52,760 --> 02:22:02,680 PROGRAMS FOR OUR STAFF. 2900 02:22:02,680 --> 02:22:07,080 AND IT'S CONNECTED TO THE PEOPLE 2901 02:22:07,080 --> 02:22:08,240 AT NIH. 2902 02:22:08,240 --> 02:22:09,880 I ENCOURAGE YOU IF YOU HAVE 2903 02:22:09,880 --> 02:22:12,600 ISSUES RELATED TO OUR PROGRAMS, 2904 02:22:12,600 --> 02:22:14,800 WHICH ARE A LITTLE DIFFERENT AND 2905 02:22:14,800 --> 02:22:16,080 MANY NIH PROGRAMS WE'RE HERE TO 2906 02:22:16,080 --> 02:22:16,280 HELP. 2907 02:22:16,280 --> 02:22:26,440 THANKS. 2908 02:22:33,520 --> 02:22:34,320 >>LIVING IN THE RARE DISEASE 2909 02:22:34,320 --> 02:22:36,000 WORLD THIS IS SOMETHING WE THINK 2910 02:22:36,000 --> 02:22:36,840 ABOUT A LOT. 2911 02:22:36,840 --> 02:22:40,040 EVEN NOT JUST GENOMIC DATA BUT 2912 02:22:40,040 --> 02:22:41,520 CLINICAL DATA CAN BE HIGHLY 2913 02:22:41,520 --> 02:22:42,640 IDENTIFYING FOR SMALL GROUPS. 2914 02:22:42,640 --> 02:22:47,840 I ASSUME WE ALL HAVE GOOD 2915 02:22:47,840 --> 02:22:48,840 GUIDANCE ON THAT. 2916 02:22:48,840 --> 02:22:51,120 I'M MISSING THE SESSION ON 2917 02:22:51,120 --> 02:22:53,080 CHILDREN'S NATIONAL ON DATA 2918 02:22:53,080 --> 02:22:54,120 POLICY ON THIS. 2919 02:22:54,120 --> 02:22:56,480 I FIGURE I'M GOING STRAIGHT TO 2920 02:22:56,480 --> 02:22:57,760 THE SOURCE AND GETTING BETTER 2921 02:22:57,760 --> 02:22:57,960 DATA. 2922 02:22:57,960 --> 02:23:00,520 HOW DO YOU WAND TO HANDLE THE 2923 02:23:00,520 --> 02:23:05,680 SMALL GROUP SIZES? 2924 02:23:05,680 --> 02:23:06,840 >>THERE'S A DISCUSSION AND WE 2925 02:23:06,840 --> 02:23:09,320 HAVE HAD TO DEAL WITH THIS 2926 02:23:09,320 --> 02:23:12,200 ALREADY WITH SOME OF OUR GENOMIC 2927 02:23:12,200 --> 02:23:12,440 WORK. 2928 02:23:12,440 --> 02:23:16,440 AND I THINK PART OF THE REASON 2929 02:23:16,440 --> 02:23:18,240 WHY THE POLICY WAS SET UP THE 2930 02:23:18,240 --> 02:23:20,840 WAY IT WAS, WHICH IS THAT WE'RE 2931 02:23:20,840 --> 02:23:22,240 NOT SAYING YOU MUST SHARE ALL 2932 02:23:22,240 --> 02:23:26,320 DATA AND SHE VERY MUCH -- SHARE 2933 02:23:26,320 --> 02:23:30,960 ALL DATA AND THANK YOU VERY MUCH 2934 02:23:30,960 --> 02:23:33,200 AND HAVE A NICE DAY BUT YOU NEED 2935 02:23:33,200 --> 02:23:34,160 A SHARING PLAN YOU NEED TO 2936 02:23:34,160 --> 02:23:36,520 DESCRIBE. 2937 02:23:36,520 --> 02:23:47,040 THE REASON IS WE FUND HIGHLY 2938 02:23:51,440 --> 02:23:59,240 HERTERO GENUS -- HETEROGENEOUS 2939 02:23:59,240 --> 02:24:01,120 RESEARCH AND THAT'S THE REASON 2940 02:24:01,120 --> 02:24:06,280 WHY WE SET IT UP. 2941 02:24:06,280 --> 02:24:12,920 WE'RE ASKING FOR PLANS AND WE 2942 02:24:12,920 --> 02:24:13,960 LOOK AT WHAT'S FEASIBLE AND 2943 02:24:13,960 --> 02:24:14,480 REASONABLE AND POSSIBLE. 2944 02:24:14,480 --> 02:24:23,400 >>THANK YOU VERY MUCH FOR THAT. 2945 02:24:23,400 --> 02:24:25,880 >>IT'S INTERESTING WHEN IT HITS 2946 02:24:25,880 --> 02:24:29,480 THE IRB WITH OUR RARE DISEASE 2947 02:24:29,480 --> 02:24:29,760 PATIENTS. 2948 02:24:29,760 --> 02:24:30,760 >>PAUL. 2949 02:24:30,760 --> 02:24:34,480 QUESTION OR COMMENT? 2950 02:24:34,480 --> 02:24:39,680 >>TWO QUESTIONS. 2951 02:24:39,680 --> 02:24:42,000 >>WE'VE DONE WELL WITH OUR 2952 02:24:42,000 --> 02:24:42,400 PARTICULAR STUDY. 2953 02:24:42,400 --> 02:24:46,680 FUNDED HAS ENDED AND I'VE CHOSEN 2954 02:24:46,680 --> 02:24:48,080 THE WRONG REPOSITORY AND GOING 2955 02:24:48,080 --> 02:24:49,680 OUT OF BUSINESS OR JACKING UP 2956 02:24:49,680 --> 02:24:51,000 THE PRICE, ETCETERA. 2957 02:24:51,000 --> 02:24:53,040 WHAT'S THE RESPONSIBILITY OF THE 2958 02:24:53,040 --> 02:24:54,560 INSTITUTION TO KEEP THE DATA 2959 02:24:54,560 --> 02:25:04,680 SHARING? 2960 02:25:06,320 --> 02:25:07,520 >>YOU'RE DESCRIBING WHERE 2961 02:25:07,520 --> 02:25:09,840 THROUGH NO FAULT OF YOUR OWN 2962 02:25:09,840 --> 02:25:10,880 YOU'RE STUCK. 2963 02:25:10,880 --> 02:25:12,720 YOU'RE IN A DIFFICULT SPOT. 2964 02:25:12,720 --> 02:25:15,720 THE SECOND IS A CONCEPT AND 2965 02:25:15,720 --> 02:25:18,320 GRANT LAW REGARDING WHAT IT 2966 02:25:18,320 --> 02:25:23,600 MEANS WHEN A GRANT IS OVER. 2967 02:25:23,600 --> 02:25:25,520 >>THERE'S LOTS OF 2968 02:25:25,520 --> 02:25:25,840 RAMIFICATIONS. 2969 02:25:25,840 --> 02:25:27,840 ONCE A GRANT IS CLOSED, THAT'S 2970 02:25:27,840 --> 02:25:29,960 IT, THE GRANT IS CLOSED AND NO 2971 02:25:29,960 --> 02:25:36,480 MORE CAN BE SPENT ON GRANT FOR 2972 02:25:36,480 --> 02:25:38,880 THE PURPOSE OF THAT GRANT. 2973 02:25:38,880 --> 02:25:41,720 WHAT HAPPENS AFTER GRANT 2974 02:25:41,720 --> 02:25:43,560 CLOSEOUT IS VERY INTERESTING 2975 02:25:43,560 --> 02:25:43,880 QUESTION. 2976 02:25:43,880 --> 02:25:47,120 IN SOME CASES IT MAY BE 2977 02:25:47,120 --> 02:25:48,520 RELATIVELY EASY TO MANAGE. 2978 02:25:48,520 --> 02:25:53,000 FOR EXAMPLE, IF THE DATA ARE 2979 02:25:53,000 --> 02:25:54,840 DEPOSITED IN AN NIH REPOSITORY 2980 02:25:54,840 --> 02:25:56,400 IT'S WITH US AND IF WE HAVE A 2981 02:25:56,400 --> 02:26:00,400 PROBLEM WITH OUR REPOSITORY, 2982 02:26:00,400 --> 02:26:01,600 THAT'S AN ISSUE. 2983 02:26:01,600 --> 02:26:02,320 THAT WILL BE PROBABLY MORE 2984 02:26:02,320 --> 02:26:07,120 LONGER TERM. 2985 02:26:07,120 --> 02:26:09,240 ANOTHER POSSIBILITY IS YOU MAKE 2986 02:26:09,240 --> 02:26:12,440 A PURPOSE OF THREE YEARS WORTH 2987 02:26:12,440 --> 02:26:14,320 OF SHARING AND THAT PURCHASE IS 2988 02:26:14,320 --> 02:26:16,920 MADE DURING THE TIME THE GRANT 2989 02:26:16,920 --> 02:26:17,760 IS ACTIVE. 2990 02:26:17,760 --> 02:26:20,000 THAT'S WHEN THE MONEY GETS SPENT 2991 02:26:20,000 --> 02:26:22,880 AND WHAT YOU'RE DOING IS 2992 02:26:22,880 --> 02:26:25,160 BASICALLY BUYING LONGER TERM 2993 02:26:25,160 --> 02:26:26,720 SUBSCRIPTION THAT MAY VERY WELL 2994 02:26:26,720 --> 02:26:27,000 WORK. 2995 02:26:27,000 --> 02:26:28,560 THE QUESTION YOU'VE ASKED IS AN 2996 02:26:28,560 --> 02:26:29,360 IMPORTANT ONE. 2997 02:26:29,360 --> 02:26:32,000 FORTUNATELY, WE DO HAVE A FEW 2998 02:26:32,000 --> 02:26:33,240 YEARS BEFORE WE HAVE TO 2999 02:26:33,240 --> 02:26:35,160 IMMEDIATELY WORRY ABOUT IT. 3000 02:26:35,160 --> 02:26:39,000 AND WE ARE NOW IN THE PROCESS OF 3001 02:26:39,000 --> 02:26:45,680 GOING THROUGH WHAT WE AFFECT 3002 02:26:45,680 --> 02:26:49,440 AFFECTIONATELY CALL ARE UNIFORM 3003 02:26:49,440 --> 02:26:50,760 GUIDANCE THAT COVER GUIDANCE 3004 02:26:50,760 --> 02:26:52,040 ACROSS THE ENTIRE FEDERAL 3005 02:26:52,040 --> 02:26:52,320 GOVERNMENT. 3006 02:26:52,320 --> 02:26:55,720 WHAT I WAS TALKING WITH YOU 3007 02:26:55,720 --> 02:26:58,280 ABOUT WITH GRANT CLOSE OUT ARE 3008 02:26:58,280 --> 02:27:00,000 THE PRINCIPLES WITHIN THE 3009 02:27:00,000 --> 02:27:04,000 UNIFORM GUIDANCE. 3010 02:27:04,000 --> 02:27:05,520 THESE ARE SOME QUESTIONS WE'LL 3011 02:27:05,520 --> 02:27:08,280 BE THINKING ABOUT AS WE ENGAGE 3012 02:27:08,280 --> 02:27:12,280 WITH COLLEAGUES DOWNTOWN IN HOW 3013 02:27:12,280 --> 02:27:14,760 THE GRANT REGULATIONS ARE MOVED 3014 02:27:14,760 --> 02:27:15,680 FORWARD AND EFFECTIVELY THE 3015 02:27:15,680 --> 02:27:16,920 SCIENCE IS AHEAD OF THE LAW AND 3016 02:27:16,920 --> 02:27:18,280 WE HAVE TO FIGURE OUT HOW TO DO 3017 02:27:18,280 --> 02:27:28,400 THAT. 3018 02:27:40,240 --> 02:27:41,520 >>YOU CAN SHARE THINGS WELL OR 3019 02:27:41,520 --> 02:27:42,440 NOT SO WELL. 3020 02:27:42,440 --> 02:27:45,240 I WORRY THERE'S NOT ENOUGH 3021 02:27:45,240 --> 02:27:47,960 PRIVACY EXPERTS AT ALL THE 3022 02:27:47,960 --> 02:27:51,600 INSTITUTIONS TO SHARE VERY WELL. 3023 02:27:51,600 --> 02:27:54,320 YOU CAN IMAGINE A SCENARIO WHERE 3024 02:27:54,320 --> 02:27:58,320 THE HARVARDS OF THE WORLD GET 3025 02:27:58,320 --> 02:27:59,640 GOOD AND THE UNIVERSITY OF SOUTH 3026 02:27:59,640 --> 02:28:01,160 TENNESSEE IS NOT SO GOOD. 3027 02:28:01,160 --> 02:28:04,360 YOU'RE GRADING ON THE BASIS OF 3028 02:28:04,360 --> 02:28:05,160 THE QUALITY THAT CAN CREATE 3029 02:28:05,160 --> 02:28:10,800 FURTHER DISPARITIES. 3030 02:28:10,800 --> 02:28:11,960 >>THAT'S TRUE. 3031 02:28:11,960 --> 02:28:14,960 ONE OF THE CONCERNS WITH ANY OF 3032 02:28:14,960 --> 02:28:15,960 THE POLICIES INCLUDING DATA 3033 02:28:15,960 --> 02:28:20,440 SHARING AND PUBLIC ACCESS IS 3034 02:28:20,440 --> 02:28:28,720 MIGHT THAT ACTUALLY WORSEN 3035 02:28:28,720 --> 02:28:30,240 DISPARITIES BETWEEN RESOURCES. 3036 02:28:30,240 --> 02:28:31,720 THAT'S WHAT WE'LL PAY ATTENTION 3037 02:28:31,720 --> 02:28:34,280 TO. 3038 02:28:34,280 --> 02:28:36,640 I'LL SAY PART OF MY JOB IS TO 3039 02:28:36,640 --> 02:28:42,320 DEAL WITH COMPLIANCE ISSUES AND 3040 02:28:42,320 --> 02:28:49,040 I HAVE SEEN I'VE SEEN WELL 3041 02:28:49,040 --> 02:28:49,760 RESOURCED INSTITUTIONS HANDLE 3042 02:28:49,760 --> 02:28:53,280 COMPLIANCE WELL AND NOT SO WELL. 3043 02:28:53,280 --> 02:28:58,080 YOUR POINT IS SPOT ON BUT IT'S A 3044 02:28:58,080 --> 02:29:00,520 COMBINATION OF HOW RESOURCED AN 3045 02:29:00,520 --> 02:29:02,160 INSTITUTION IS AND THE CULTURE 3046 02:29:02,160 --> 02:29:02,640 WHAT CULTURE DOES THE 3047 02:29:02,640 --> 02:29:12,960 INSTITUTION HAVE. 3048 02:29:18,120 --> 02:29:21,960 >>I'M EXCITED TO SEE THE 3049 02:29:21,960 --> 02:29:24,760 SHARING OF DATA HAS BEEN A 3050 02:29:24,760 --> 02:29:25,960 CORNERSTONE FOR WHAT WE HAVE 3051 02:29:25,960 --> 02:29:28,280 BUILT AND HAVE BEEN ABLE TO 3052 02:29:28,280 --> 02:29:29,680 ACHIEVE. 3053 02:29:29,680 --> 02:29:31,480 ONE COMMENT YOU ADDRESSED IS THE 3054 02:29:31,480 --> 02:29:41,880 PLAYING FIELD IS NOT LEVEL. 3055 02:29:41,880 --> 02:29:44,240 AND WE HAVE PEOPLE DOING THE JOB 3056 02:29:44,240 --> 02:29:47,000 FOR A LIVING AND WE MADE AN 3057 02:29:47,000 --> 02:29:51,080 EFFORT AND ACTIVELY LEARNED WHAT 3058 02:29:51,080 --> 02:29:52,720 OUR USER COMMUNITY WANTS TO SEE 3059 02:29:52,720 --> 02:29:58,280 AND HOW TO SHARE FROM PATIENT 3060 02:29:58,280 --> 02:30:02,240 PARTICIPANTS UP TO PROFESSIONAL 3061 02:30:02,240 --> 02:30:13,120 BIO INFORMATITION -- BIOB 3062 02:30:18,400 --> 02:30:25,480 BIOINFORMATICIAN AND WE WANT 3063 02:30:25,480 --> 02:30:33,840 THEM TO STAY IN CLINICAL CARE. 3064 02:30:33,840 --> 02:30:35,960 IF YOU CONTINUE THE LISTENING 3065 02:30:35,960 --> 02:30:37,120 SESSION NOT ONLY IN BUILDING 3066 02:30:37,120 --> 02:30:41,480 POLICY BUT OVER THE NEXT THREE, 3067 02:30:41,480 --> 02:30:43,120 SIX, 12 MONTHS TO SEE HOW THE 3068 02:30:43,120 --> 02:30:44,400 POLICY IS IMPLEMENTED AND LEARN 3069 02:30:44,400 --> 02:30:50,680 FROM PEOPLE WHO ARE STRUGGLING 3070 02:30:50,680 --> 02:30:58,320 AND WATCH WHAT IS A SUBMISSION 3071 02:30:58,320 --> 02:31:01,680 STRUCTURE AND ARE THERE PARTS 3072 02:31:01,680 --> 02:31:03,480 WHERE YOU SEE LESS GRANTS COMING 3073 02:31:03,480 --> 02:31:05,920 IN SO WE DON'T RUN INTO 3074 02:31:05,920 --> 02:31:11,040 UNINTENDED CONSEQUENCES. 3075 02:31:11,040 --> 02:31:12,640 THE FINAL POINT SHARING DATA 3076 02:31:12,640 --> 02:31:22,360 EARLY AND OFTEN PAYS FOR 3077 02:31:22,360 --> 02:31:24,560 INVESTIGATORS. 3078 02:31:24,560 --> 02:31:33,280 THEY GAIN VISIBILITY AND WHAT IS 3079 02:31:33,280 --> 02:31:37,000 THE ADVANTAGE LIKE IN THE 3080 02:31:37,000 --> 02:31:42,280 EXAMPLE OF SHARING DATA EARLY 3081 02:31:42,280 --> 02:31:44,960 AND OFTEN AND IN THE FEDERAL 3082 02:31:44,960 --> 02:31:46,320 MANDATE. 3083 02:31:46,320 --> 02:31:51,640 >>EXCELLENT POINTS. 3084 02:31:51,640 --> 02:31:56,800 >>WE SEE THIS AS A LEARNING 3085 02:31:56,800 --> 02:31:58,960 EXPERIENCE. 3086 02:31:58,960 --> 02:32:04,240 WE'LL BE PAYING CLOSE ATTENTION 3087 02:32:04,240 --> 02:32:06,400 AND GOING ON YEARS. 3088 02:32:06,400 --> 02:32:09,600 ANG WHAT CAN WE DO TO MAKE THE 3089 02:32:09,600 --> 02:32:16,800 PROCESS MORE USER FRIENDLY AND 3090 02:32:16,800 --> 02:32:17,840 YOU MAKE A GOOD POINT. 3091 02:32:17,840 --> 02:32:23,480 ONE MESSAGE WE'D LIKE TO PROMOTE 3092 02:32:23,480 --> 02:32:25,560 AND MAYBE I DID A LITTLE BIT 3093 02:32:25,560 --> 02:32:27,360 HAVING HIGH QUALITY DATA 3094 02:32:27,360 --> 02:32:30,320 AVAILABLE OUT THERE CAN HELP 3095 02:32:30,320 --> 02:32:30,840 JUNIOR INVESTIGATORS GET 3096 02:32:30,840 --> 02:32:31,960 PROGRAMS GOING. 3097 02:32:31,960 --> 02:32:34,320 AND MY OWN EXPERIENCE AT THE 3098 02:32:34,320 --> 02:32:38,080 TIME I WAS OBTAINING SHARED DATA 3099 02:32:38,080 --> 02:32:41,200 FROM NHLBI I WAS BUILDING UP MY 3100 02:32:41,200 --> 02:32:42,520 OWN RESEARCH PROGRAM AND HAD NOT 3101 02:32:42,520 --> 02:32:46,960 REACHED THE LEVEL OF MATURATION. 3102 02:32:46,960 --> 02:32:49,000 I WAS ABLE TO DO SOMETHING AND 3103 02:32:49,000 --> 02:32:54,320 LEARN SOMETHING AND WHEN YOU SEE 3104 02:32:54,320 --> 02:32:56,400 AND WEN YOU SEE HOW THEY 3105 02:32:56,400 --> 02:32:58,840 ANNOTATE IT, CURATE IT, DESCRIBE 3106 02:32:58,840 --> 02:33:00,920 IT, IT'S A ROLE MODEL IF IT'S 3107 02:33:00,920 --> 02:33:02,520 BEING DONE WELL, I WANT TO DO 3108 02:33:02,520 --> 02:33:03,840 THE SAME THING. 3109 02:33:03,840 --> 02:33:06,640 I WANT TO MAKE MY DATA LOOK THIS 3110 02:33:06,640 --> 02:33:08,680 GOOD SO WHERE OTHER SCIENTISTS 3111 02:33:08,680 --> 02:33:11,400 MAY DISAGREE WITH MY 3112 02:33:11,400 --> 02:33:12,360 INTERPRETATIONS, THEY'LL 3113 02:33:12,360 --> 02:33:12,960 APPRECIATE WE'RE TRYING TO DO 3114 02:33:12,960 --> 02:33:17,280 CAREFUL WORK. 3115 02:33:17,280 --> 02:33:22,080 >>WE SAW DATA SET ON A SILVER 3116 02:33:22,080 --> 02:33:27,520 PLATE TO YOUNG INVESTIGATORS TO 3117 02:33:27,520 --> 02:33:29,000 ATTRACT THEM TO SCIENCE AND THIS 3118 02:33:29,000 --> 02:33:39,520 WHAT THIS WILL DO IF I AM -- 3119 02:33:42,360 --> 02:33:44,440 IMPLEMENTED EFFECTIVELY. 3120 02:33:44,440 --> 02:33:46,440 >>I APPRECIATE THE CONVERSATION 3121 02:33:46,440 --> 02:33:47,520 AND EFFORT. 3122 02:33:47,520 --> 02:33:49,600 I SEE THIS THROUGH THE LENS OF 3123 02:33:49,600 --> 02:34:00,000 EVACUATE BEEN A PART OF 3124 02:34:04,520 --> 02:34:06,000 FRUSTRATION OF COMMUNITIES AND 3125 02:34:06,000 --> 02:34:07,760 THE LONG RUNWAYS AND TIME LINES 3126 02:34:07,760 --> 02:34:12,360 TO HAVE DATA PUBLISHED AND 3127 02:34:12,360 --> 02:34:14,000 SHARED AND COMMUNITIES THAT 3128 02:34:14,000 --> 02:34:15,800 ATTEMPTED TO FACILITATE 3129 02:34:15,800 --> 02:34:16,480 RELATIONSHIPS BETWEEN 3130 02:34:16,480 --> 02:34:19,720 INVESTIGATORS AND RUN INTO 3131 02:34:19,720 --> 02:34:21,080 BARRIERS BECAUSE THE DATA 3132 02:34:21,080 --> 02:34:21,840 SHARING BARRIERS WERE 3133 02:34:21,840 --> 02:34:30,680 INSURMOUNTABLE. 3134 02:34:30,680 --> 02:34:34,320 AND EN FORCES DATA SHARING 3135 02:34:34,320 --> 02:34:36,760 POLICIES AND WE RAN INTO THERE 3136 02:34:36,760 --> 02:34:38,480 WEREN'T TEETH IN THE EXISTING 3137 02:34:38,480 --> 02:34:48,640 POLICIES. 3138 02:34:54,840 --> 02:34:56,080 WE WERE PLEASED TO SEE 3139 02:34:56,080 --> 02:34:57,200 LEGISLATION NOW IMPLEMENTED ON 3140 02:34:57,200 --> 02:34:57,520 THE BACK END. 3141 02:34:57,520 --> 02:35:00,440 THANK YOU FOR THE WORK. 3142 02:35:00,440 --> 02:35:04,880 A COUPLE QUESTIONS AROUND THAT. 3143 02:35:04,880 --> 02:35:06,280 WHEN WE TALK ABOUT DATA AND I 3144 02:35:06,280 --> 02:35:08,160 KNOW IT'S MANY THINGS, MANY 3145 02:35:08,160 --> 02:35:08,400 FORMS. 3146 02:35:08,400 --> 02:35:11,480 A LARGE SHARE OF THE DATA IS 3147 02:35:11,480 --> 02:35:11,920 PATIENT EXPERIENCE. 3148 02:35:11,920 --> 02:35:14,280 AND OFTEN TIMES THE PATIENTS WHO 3149 02:35:14,280 --> 02:35:17,840 PARTICIPATED IN THESE STUDIES 3150 02:35:17,840 --> 02:35:22,960 AND CLINICAL TRIALS AND NATURE 3151 02:35:22,960 --> 02:35:28,320 HISTORY STUDIES AND I'M 3152 02:35:28,320 --> 02:35:31,760 WONDERING IF WHEN FORMULATING 3153 02:35:31,760 --> 02:35:34,280 THIS POLICY WERE THERE ANY 3154 02:35:34,280 --> 02:35:35,440 PATIENTS INVOLVED OR PATIENT 3155 02:35:35,440 --> 02:35:36,040 ADVOCACY ORGANIZATIONS OR 3156 02:35:36,040 --> 02:35:38,280 PATIENT GROUPS THAT HAVE BEEN 3157 02:35:38,280 --> 02:35:40,120 INVOLVED IN RESEARCH INVOLVED IN 3158 02:35:40,120 --> 02:35:41,240 POLICY MAKING AND CONSIDERATIONS 3159 02:35:41,240 --> 02:35:43,800 FOR THE POLICY? 3160 02:35:43,800 --> 02:35:45,520 SO THAT WOULD BE -- I'LL PUT MY 3161 02:35:45,520 --> 02:35:46,320 QUESTIONS OUT AND YOU CAN ANSWER 3162 02:35:46,320 --> 02:35:51,440 THEM. 3163 02:35:51,440 --> 02:35:52,880 WHEN YOU LISTED THE REASONS FOR 3164 02:35:52,880 --> 02:35:53,440 NOT SHARING DATA. 3165 02:35:53,440 --> 02:35:55,480 WHEN YOU WORK WITH INVESTIGATORS 3166 02:35:55,480 --> 02:35:59,400 TO DEVELOP A PLAN, IT JUST FELT 3167 02:35:59,400 --> 02:36:04,040 TO ME THE THREE OR FOUR BULLETED 3168 02:36:04,040 --> 02:36:06,560 REASONS THEY FELT BROAD AND 3169 02:36:06,560 --> 02:36:12,280 BIASANCED -- BIASSED 3170 02:36:12,280 --> 02:36:15,440 POPULATIONS AND MAYBE MORE 3171 02:36:15,440 --> 02:36:16,360 SPECIFICITY AROUND THAT AND 3172 02:36:16,360 --> 02:36:17,520 MAYBE SOMETHING TO WATCH FOR 3173 02:36:17,520 --> 02:36:20,800 THAT WE DON'T WANT TO DEVELOP 3174 02:36:20,800 --> 02:36:22,360 POLICIES BIASSED AGAINST 3175 02:36:22,360 --> 02:36:23,000 POPULATIONS OVER OTHERS BECAUSE 3176 02:36:23,000 --> 02:36:28,680 DATA SHARING IS AN OPERATOR -- 3177 02:36:28,680 --> 02:36:30,200 PRIORITY FOR OUR COMMUNITIES AND 3178 02:36:30,200 --> 02:36:36,520 DON'T WANT TO NAD VINADVERTENTL 3179 02:36:36,520 --> 02:36:38,040 IDENTIFIED FOLKS BUT THE LAST IS 3180 02:36:38,040 --> 02:36:42,120 AROUND THE BARRIER WE RAN INTO 3181 02:36:42,120 --> 02:36:44,280 BEFORE IS THE QUESTION OF THE 3182 02:36:44,280 --> 02:36:44,480 TEETH. 3183 02:36:44,480 --> 02:36:52,640 I SAW YOU TALKED ABOUT THE LACK 3184 02:36:52,640 --> 02:36:54,560 OF FOLLOW THROUGH IMPACT FUTURE 3185 02:36:54,560 --> 02:36:59,960 FUNDING IS THE ABILITY FOR NIH 3186 02:36:59,960 --> 02:37:01,200 TO GO BACK IF SOMEBODY HASN'T 3187 02:37:01,200 --> 02:37:02,280 COMPLIED AND WOULD THIS IMPACT 3188 02:37:02,280 --> 02:37:04,720 THEIR EXISTING FUNDING? 3189 02:37:04,720 --> 02:37:06,720 COULD THIS IMPACT PUBLICATIONS? 3190 02:37:06,720 --> 02:37:08,360 ARE THERE ANY TEETH IN THIS NEW 3191 02:37:08,360 --> 02:37:18,760 POLICY IS THE QUESTION? 3192 02:37:20,440 --> 02:37:22,720 >>I'LL PLAY A LITTLE IGNORANCE 3193 02:37:22,720 --> 02:37:23,720 BECAUSE I WAS NOT AT THE TABLE 3194 02:37:23,720 --> 02:37:25,400 WHEN THAT WAS HAPPENING AND PART 3195 02:37:25,400 --> 02:37:26,680 OF THE PROCESS BUT NOT TO THE 3196 02:37:26,680 --> 02:37:29,840 SAME DEGREE AS MY COLLEAGUES 3197 02:37:29,840 --> 02:37:30,560 FROM THE OFFICE OF SCIENCE 3198 02:37:30,560 --> 02:37:31,920 POLICY WERE AND I BELIEVE THE 3199 02:37:31,920 --> 02:37:42,440 ANSWER TO YOUR QUESTION IS YES. 3200 02:37:45,120 --> 02:37:46,720 AND AS THE PROCESS EVOLVED WE 3201 02:37:46,720 --> 02:37:50,280 DON'T BANT TO EFFECTIVELY BIAS 3202 02:37:50,280 --> 02:37:52,360 CERTAIN POPULATIONS. 3203 02:37:52,360 --> 02:37:59,280 WE'LL GET TENS OF THOUSANDS OF 3204 02:37:59,280 --> 02:38:00,640 SHARING PLANS. 3205 02:38:00,640 --> 02:38:03,200 WE HAVE SOME EXPERIENCE BASED ON 3206 02:38:03,200 --> 02:38:05,920 THE POLICIES THAT ALREADY EXIST 3207 02:38:05,920 --> 02:38:08,440 BUT MUCH OF THIS HAS BEEN 3208 02:38:08,440 --> 02:38:10,120 THEORETICAL OR HYPOTHETICAL. 3209 02:38:10,120 --> 02:38:12,760 NOW IT WILL BE REAL. 3210 02:38:12,760 --> 02:38:18,240 ONE THING WE'LL DO IS WE'RE 3211 02:38:18,240 --> 02:38:21,680 GOING DEVELOP A PANEL OF NIH 3212 02:38:21,680 --> 02:38:22,880 STAFF WHO HAVE STRONG INTEREST 3213 02:38:22,880 --> 02:38:25,000 IN EXPERTISE IN DATA MANAGEMENT 3214 02:38:25,000 --> 02:38:29,000 SHARING TO HELP US DEAL WITH THE 3215 02:38:29,000 --> 02:38:32,400 INTERESTING ONES PLANS THAT ARE 3216 02:38:32,400 --> 02:38:37,640 CHALLENGING FOR A VARIETY OF 3217 02:38:37,640 --> 02:38:40,600 REASONS. 3218 02:38:40,600 --> 02:38:42,600 THE OTHER IS TO GATHER 3219 02:38:42,600 --> 02:38:48,640 BASICAL 3220 02:38:48,640 --> 02:38:50,240 BASICALLIAL -- BASICALLY A 3221 02:38:50,240 --> 02:38:51,600 KNOWLEDGE BASE AND WHERE THERE 3222 02:38:51,600 --> 02:38:54,320 ARE PROBLEMS TO HELP THINK THIS 3223 02:38:54,320 --> 02:38:58,680 THROUGH GOING FORWARD. 3224 02:38:58,680 --> 02:39:01,960 AND WE GIVE GRANTS TO 3225 02:39:01,960 --> 02:39:04,480 INSTITUTIONS NOT INDIVIDUAL 3226 02:39:04,480 --> 02:39:04,760 SCIENTISTS. 3227 02:39:04,760 --> 02:39:05,520 AND WHEN THERE ARE COMPLIANCE 3228 02:39:05,520 --> 02:39:06,520 CONCERNS WE CAN TAKE A VARIETY 3229 02:39:06,520 --> 02:39:07,160 OF ACTIONS. 3230 02:39:07,160 --> 02:39:14,200 WE CAN TAKE ACTIONS ON SPECIFIC 3231 02:39:14,200 --> 02:39:17,800 GRANTS AND WE CAN SUSPEND A 3232 02:39:17,800 --> 02:39:19,480 GRANT OR REQUEST OR REQUIRE 3233 02:39:19,480 --> 02:39:21,320 THERE'S NEGOTIATION OF TERMS AND 3234 02:39:21,320 --> 02:39:21,640 CONDITIONS. 3235 02:39:21,640 --> 02:39:31,480 WE CAN REQUEST RETURN OF FUNDS. 3236 02:39:31,480 --> 02:39:33,480 AND WE CAN ISSUE NEW FUNDING ON 3237 02:39:33,480 --> 02:39:35,240 CERTAIN TYPES OF PROJECTS. 3238 02:39:35,240 --> 02:39:40,040 WE HAVE A WIDE VARIETY OF LEVERS 3239 02:39:40,040 --> 02:39:45,360 FOR US THAT AND WE USE THESE 3240 02:39:45,360 --> 02:39:46,720 JUDICIALLY AND CAREFULLY WHEN 3241 02:39:46,720 --> 02:39:48,560 DEALING WITH COMPLIANCE 3242 02:39:48,560 --> 02:39:54,560 CONCERNS. 3243 02:39:54,560 --> 02:39:59,680 UP TO NOW WE HAVEN'T HAD TEETH 3244 02:39:59,680 --> 02:40:02,280 EXCEPT FOR SPECIFIC POLICIES 3245 02:40:02,280 --> 02:40:06,600 LIKE PROJECTS LIKE GENOMIC DATA 3246 02:40:06,600 --> 02:40:07,000 SHARING. 3247 02:40:07,000 --> 02:40:09,600 NOW, BECAUSE WE'RE ESSENTIALLY 3248 02:40:09,600 --> 02:40:11,920 SAYING TO GRANT RECIPIENT, YOU 3249 02:40:11,920 --> 02:40:13,640 NEED TO FOLLOW YOUR OWN PLAN. 3250 02:40:13,640 --> 02:40:18,840 IT'S LIKE CONFLICT OF INTEREST. 3251 02:40:18,840 --> 02:40:20,960 AND YOU HAVE TO FOLLOW YOUR OWN 3252 02:40:20,960 --> 02:40:22,400 PLAN AND IF YOU DON'T THEN 3253 02:40:22,400 --> 02:40:25,280 YOU'RE OUT OF COMPLIANCE AND 3254 02:40:25,280 --> 02:40:27,480 THEN WE HAVE A VARIETY OF LEVERS 3255 02:40:27,480 --> 02:40:33,760 WE CAN USE AND WE DO USE THEM IN 3256 02:40:33,760 --> 02:40:34,320 AN APPROPRIATE WAY. 3257 02:40:34,320 --> 02:40:43,520 THANK YOU. 3258 02:40:43,520 --> 02:40:47,080 >>TWO THINGS. 3259 02:40:47,080 --> 02:40:50,360 I SIT ON THE BLACK WOMEN HEALTH 3260 02:40:50,360 --> 02:40:50,720 IMPERATIVE. 3261 02:40:50,720 --> 02:40:52,000 THOSE ARE TWO GROUPS YOU SHOULD 3262 02:40:52,000 --> 02:40:55,240 TALK TO TO SEE HOW THEY IMPACT 3263 02:40:55,240 --> 02:40:57,280 ENROLLING IN STUDIES THERE'S 3264 02:40:57,280 --> 02:41:00,560 ALREADY HUGE TRUST ISSUES TO 3265 02:41:00,560 --> 02:41:03,400 BEGIN WITH AND YOU SAY YOUR DATA 3266 02:41:03,400 --> 02:41:04,040 COULD BE SHARED OR GOING TO BE 3267 02:41:04,040 --> 02:41:09,600 SHARED. 3268 02:41:09,600 --> 02:41:13,200 I WOULD TRY TO GET INPUT IN DATA 3269 02:41:13,200 --> 02:41:14,320 GOING FORWARD. 3270 02:41:14,320 --> 02:41:18,480 AND ANOTHER INTERESTING QUESTION 3271 02:41:18,480 --> 02:41:19,960 ABOUT TEETH AND ENFORCEMENT. 3272 02:41:19,960 --> 02:41:21,840 HISTORICALLY ONE OF THE HARDEST 3273 02:41:21,840 --> 02:41:23,560 PLACES TO GET MATERIALS AND DATA 3274 02:41:23,560 --> 02:41:24,800 IS FROM WHERE? 3275 02:41:24,800 --> 02:41:26,080 THE NIH? 3276 02:41:26,080 --> 02:41:32,280 HOW ARE YOU GOING ENFORCE THIS 3277 02:41:32,280 --> 02:41:42,800 INTERNALLY AND MAKE FOLKS DO 3278 02:41:53,320 --> 02:41:53,440 THIS. 3279 02:41:53,440 --> 02:41:56,200 >>AND THERE'S SPECIFIC GRANTS 3280 02:41:56,200 --> 02:42:01,400 BUT JUST AS THE POLICY TOOK 3281 02:42:01,400 --> 02:42:03,960 EFFECT YESTERDAY FOR EXTRAMURAL 3282 02:42:03,960 --> 02:42:05,120 PROJECTS THEY APPLY TO 3283 02:42:05,120 --> 02:42:05,600 INTRAMURAL PROJECTS. 3284 02:42:05,600 --> 02:42:09,480 >>WHERE ARE THE TEETH? 3285 02:42:09,480 --> 02:42:14,800 >>I'M THE EXTRAMURAL PERSON 3286 02:42:14,800 --> 02:42:15,160 SO -- 3287 02:42:15,160 --> 02:42:19,840 >>AND I CAN SEE THIS PART OF 3288 02:42:19,840 --> 02:42:22,360 BSC REVIEW AND BOARD OF 3289 02:42:22,360 --> 02:42:23,560 SCIENTIFIC COUNSELORS. 3290 02:42:23,560 --> 02:42:25,200 IF YOU'RE NOT SHARING DATA, 3291 02:42:25,200 --> 02:42:26,320 YOU'RE NOT BEING AN OUTSTANDING 3292 02:42:26,320 --> 02:42:35,320 SCIENTIST. 3293 02:42:35,320 --> 02:42:38,840 >>AND LET FOLKS KNOW INTERNALS 3294 02:42:38,840 --> 02:42:42,320 ARE NOT AND IT'S SURPRISING TO 3295 02:42:42,320 --> 02:42:52,400 ME. 3296 02:42:52,720 --> 02:42:55,120 >>MIKE, I FOUND YOUR 3297 02:42:55,120 --> 02:42:57,040 PRESENTATION REALLY HELPFUL. 3298 02:42:57,040 --> 02:43:07,600 VERY TIMELY AS WELL. 3299 02:43:07,600 --> 02:43:09,520 AND THERE'S REPOSITORIES 3300 02:43:09,520 --> 02:43:14,920 AVAILABLE TO THE PUBLIC AND I 3301 02:43:14,920 --> 02:43:22,360 DIDN'T SEE AND THAT'S WHY MY 3302 02:43:22,360 --> 02:43:24,560 QUESTION ALL OF US RESEARCH 3303 02:43:24,560 --> 02:43:29,320 PROGRAM INCLUDED AND WHAT 3304 02:43:29,320 --> 02:43:31,400 TRIGGERED THE QUESTION IS 3305 02:43:31,400 --> 02:43:35,800 LOOKING AT THE CONSORTIUM OF 3306 02:43:35,800 --> 02:43:38,520 PROGRAMS AND WE ARE USING THE 3307 02:43:38,520 --> 02:43:44,440 ALL OF US MASTER DATA IS TO 3308 02:43:44,440 --> 02:43:48,960 RECRUIT WORK BENCH RESEARCHERS 3309 02:43:48,960 --> 02:43:52,040 AT OUR INSTITUTION AND THE IDEA 3310 02:43:52,040 --> 02:43:55,840 IS TO ALSO RECRUIT EVEN 3311 02:43:55,840 --> 02:43:56,320 COMMUNITY MEMBERS. 3312 02:43:56,320 --> 02:44:00,120 STUDENTS, TO POTENTIALLY USE THE 3313 02:44:00,120 --> 02:44:02,320 DATA SO THE REACH IS VERY 3314 02:44:02,320 --> 02:44:04,280 INTERESTING. 3315 02:44:04,280 --> 02:44:07,560 AND NOT ONLY THAT. 3316 02:44:07,560 --> 02:44:12,560 PART OF THE COMMITMENT IS TO USE 3317 02:44:12,560 --> 02:44:15,040 COMMUNITY HEALTH WORKERS TO 3318 02:44:15,040 --> 02:44:17,640 CONTINUE COLLECTING MORE DATA 3319 02:44:17,640 --> 02:44:21,720 AND THIS IS BEING PAID BY NIH. 3320 02:44:21,720 --> 02:44:24,560 I THINK THAT SPECIFICALLY NCATS, 3321 02:44:24,560 --> 02:44:28,480 IF I'M NOT MISTAKEN. 3322 02:44:28,480 --> 02:44:37,160 IT'S A MODEL OF USING REPOSITORY 3323 02:44:37,160 --> 02:44:43,840 DATABASES THAT TIE AND TAKES 3324 02:44:43,840 --> 02:44:45,320 MILLIONS OF DOLLARS. 3325 02:44:45,320 --> 02:44:46,360 IF YOU CAN COMMENT I'D 3326 02:44:46,360 --> 02:44:46,960 APPRECIATE IT. 3327 02:44:46,960 --> 02:44:50,320 >>THE "ALL OF US" PROGRAM IS A 3328 02:44:50,320 --> 02:44:55,240 GREAT EXAMPLE. 3329 02:44:55,240 --> 02:44:56,840 AND WE LOOK AT THE CONCEPTION OF 3330 02:44:56,840 --> 02:44:59,840 THE "ALL OF US" PROGRAM FROM THE 3331 02:44:59,840 --> 02:45:00,560 BEGINNING. 3332 02:45:00,560 --> 02:45:05,880 AND THE IDEA DATA WOULD BE 3333 02:45:05,880 --> 02:45:11,920 SHARED WAS THAT WAS CORE TO TO 3334 02:45:11,920 --> 02:45:14,000 THE PROJECT FROM THE ORIGINS. 3335 02:45:14,000 --> 02:45:15,720 I THINK IT'S GREAT EXAMPLE. 3336 02:45:15,720 --> 02:45:18,360 I WASN'T THINKING OF IT AS A 3337 02:45:18,360 --> 02:45:21,120 REPOSITORY IN THE SENSE OF 3338 02:45:21,120 --> 02:45:24,200 WRITING AN RO1 GRANT FROM AN 3339 02:45:24,200 --> 02:45:24,960 UNIVERSITY SOMEWHERE I WOULDN'T 3340 02:45:24,960 --> 02:45:27,440 PUT MY DATA INTO ALL OF US 3341 02:45:27,440 --> 02:45:29,000 BECAUSE IT'S NOT PART OF THE ALL 3342 02:45:29,000 --> 02:45:30,320 OF US PROGRAM BUT FOR FUTURE 3343 02:45:30,320 --> 02:45:32,080 VERSIONS OF THIS TALK I WILL 3344 02:45:32,080 --> 02:45:36,280 INCLUDE ALL OF US AS AN EXAMPLE 3345 02:45:36,280 --> 02:45:37,520 OF A DATA SHARING RESOURCE WE 3346 02:45:37,520 --> 02:45:40,080 HOPE THE COMMUNITY WILL TAKE 3347 02:45:40,080 --> 02:45:43,040 ADVANTAGE OF AND AS AN EXAMPLE 3348 02:45:43,040 --> 02:45:46,320 OF HOW DATA SHARING CAN BE 3349 02:45:46,320 --> 02:45:46,600 POWERFUL. 3350 02:45:46,600 --> 02:45:54,160 >>THANK YOU. 3351 02:45:54,160 --> 02:45:59,600 >>AND FROM ABOUT WHAT I GATHER 3352 02:45:59,600 --> 02:46:04,840 THE DATABASE HASN'T BEEN USED 3353 02:46:04,840 --> 02:46:11,640 WIDELY AND GETTING ARTICLES 3354 02:46:11,640 --> 02:46:11,920 PUBLISHEDED. 3355 02:46:11,920 --> 02:46:18,320 AND THERE'S AN EMPHASIS ON 3356 02:46:18,320 --> 02:46:20,160 RECRUITING EARLY CAREER 3357 02:46:20,160 --> 02:46:21,760 RESEARCHERS FROM DIVERSE 3358 02:46:21,760 --> 02:46:23,760 BACKGROUNDS TO HELP WITH THEIR 3359 02:46:23,760 --> 02:46:29,200 CAREER DEVELOPMENT WHICH I THINK 3360 02:46:29,200 --> 02:46:34,320 IS GREAT THE NIH IS INVESTING IN 3361 02:46:34,320 --> 02:46:34,640 THOSE EFFORTS. 3362 02:46:34,640 --> 02:46:37,440 >>THANK YOU. 3363 02:46:37,440 --> 02:46:39,480 >>THANK YOU VERY MUCH, MIKE. 3364 02:46:39,480 --> 02:46:41,400 WE APPRECIATE IT. 3365 02:46:41,400 --> 02:46:44,280 >>THANK YOU, CLAIRE AND ANNA 3366 02:46:44,280 --> 02:46:45,440 AND JONI AND HAVE A GREAT 3367 02:46:45,440 --> 02:46:46,000 AFTERNOON. 3368 02:46:46,000 --> 02:46:47,400 ENJOY THE REST OF THE MEETING. 3369 02:46:47,400 --> 02:46:50,320 >>THANKS, MIKE. 3370 02:46:50,320 --> 02:46:54,320 >>LOOKS LIKE JONI'S BACK. 3371 02:46:54,320 --> 02:46:57,040 BACK OVER TO HER. 3372 02:46:57,040 --> 02:46:57,880 >>THANK YOU, MIKE. 3373 02:46:57,880 --> 02:47:00,560 I APPRECIATE THAT AND YOUR 3374 02:47:00,560 --> 02:47:02,720 LEADERSHIP AT THE NIH ON THESE 3375 02:47:02,720 --> 02:47:04,000 ISSUES AMONGST THE OTHER THINGS 3376 02:47:04,000 --> 02:47:05,600 YOU DO. 3377 02:47:05,600 --> 02:47:07,800 I APPRECIATE IT. 3378 02:47:07,800 --> 02:47:10,760 NEXT WE HAVE A PRESENTATION ON 3379 02:47:10,760 --> 02:47:13,320 FROM THE OFFICE OF SPECIAL 3380 02:47:13,320 --> 02:47:15,560 INITIATIVES WITH DR. DAN TAGLE. 3381 02:47:15,560 --> 02:47:18,640 I'LL LET DAN GO AHEAD AND TAKE 3382 02:47:18,640 --> 02:47:18,840 OVER. 3383 02:47:18,840 --> 02:47:19,400 DAN. 3384 02:47:19,400 --> 02:47:21,080 >>THANK YOU, JONI. 3385 02:47:21,080 --> 02:47:22,000 GOOD AFTERNOON, EVERYONE. 3386 02:47:22,000 --> 02:47:24,720 THANK YOU FOR HANGING IN THERE. 3387 02:47:24,720 --> 02:47:26,800 THIS LOOKS LIKE WE'RE IN THE 3388 02:47:26,800 --> 02:47:27,840 HOME STRETCH AND THIS WILL BE 3389 02:47:27,840 --> 02:47:28,960 THE LAST PRESENTATION. 3390 02:47:28,960 --> 02:47:34,040 I'M GOING GIVE A PROGRAM UPDATE 3391 02:47:34,040 --> 02:47:38,000 BUT FROM MY OFFICE AND PRIMARILY 3392 02:47:38,000 --> 02:47:41,520 ONE PROGRAM WITHIN THE OFFICE OF 3393 02:47:41,520 --> 02:47:42,840 SPECIAL INITIATIVES. 3394 02:47:42,840 --> 02:47:44,400 SO NEXT SLIDE, PLEASE. 3395 02:47:44,400 --> 02:47:46,240 JUST TO GIVE YOU AN IDEA WHERE 3396 02:47:46,240 --> 02:47:47,280 WE FIT. 3397 02:47:47,280 --> 02:47:51,160 THE OFFICE OF SPECIAL 3398 02:47:51,160 --> 02:47:54,960 INITIATIVES IS ONE OF SIX 3399 02:47:54,960 --> 02:47:57,080 OFFICES WITHIN THE NCATS 3400 02:47:57,080 --> 02:47:58,240 ORGANIZATION. 3401 02:47:58,240 --> 02:48:02,040 WE'RE MADE OF A DIVERSE GROUP OF 3402 02:48:02,040 --> 02:48:05,360 SCIENTISTS STARTING WITH PROGRAM 3403 02:48:05,360 --> 02:48:07,640 OFFICERS COMING FROM DIFFERENT 3404 02:48:07,640 --> 02:48:13,960 BACKGROUNDS OF CHEMISTRY AND 3405 02:48:13,960 --> 02:48:14,800 MICROBIOL 3406 02:48:14,800 --> 02:48:17,840 MICROBIOLOGISTS, BIOFPHYSICISTS 3407 02:48:17,840 --> 02:48:22,360 AND BIOMEDICAL ENGINEERS AND WE 3408 02:48:22,360 --> 02:48:28,680 HAVE PRESENTERS TODAY WHO ARE 3409 02:48:28,680 --> 02:48:32,080 PROGRAM OFFICERS SOME JOINED TWO 3410 02:48:32,080 --> 02:48:35,160 MONTHS AGO AND CAME FROM AND GOT 3411 02:48:35,160 --> 02:48:37,280 A Ph.D. IN CHEMISTRY FROM THE 3412 02:48:37,280 --> 02:48:39,960 UNIVERSITY OF WISCONSIN AND 3413 02:48:39,960 --> 02:48:44,280 JOINED FROM NIGMS. 3414 02:48:44,280 --> 02:48:48,440 THE OTHER HAND ARE ABLE 3415 02:48:48,440 --> 02:48:53,680 ASSISTANTS IN TERMS OF THE 3416 02:48:53,680 --> 02:49:01,720 PROGRAM MANAGERS AND A FELLOW 3417 02:49:01,720 --> 02:49:07,120 FROM NCI AND IS A BIOMEDICAL 3418 02:49:07,120 --> 02:49:08,040 ENGINEER BY TRAINING. 3419 02:49:08,040 --> 02:49:12,160 TALENTED GROUP OF PEOPLE AND 3420 02:49:12,160 --> 02:49:13,880 DIVERSE BACKGROUND. 3421 02:49:13,880 --> 02:49:16,400 THIS IS WHAT WE ARE DOING AT THE 3422 02:49:16,400 --> 02:49:17,800 OFFICE OF SPECIAL INITIATIVE. 3423 02:49:17,800 --> 02:49:20,800 WHAT WE DO IS TO ADDRESS 3424 02:49:20,800 --> 02:49:22,440 TRANSLATIONAL PROBLEMS THROUGH 3425 02:49:22,440 --> 02:49:24,480 INNOVATIVE SOLUTIONS BY 3426 02:49:24,480 --> 02:49:27,560 DEVELOPING AND IMPLEMENTING 3427 02:49:27,560 --> 02:49:30,280 DISRUPTIVE TECHNOLOGIES USING 3428 02:49:30,280 --> 02:49:31,520 INTERDISCIPLINARY APPROACHES IN 3429 02:49:31,520 --> 02:49:33,640 PUBLIC-PRIVATE PARTNERSHIP. 3430 02:49:33,640 --> 02:49:37,800 WHAT I DIDN'T HAVE ARE SLIDES 3431 02:49:37,800 --> 02:49:39,640 WITH OUR PARTNERS AND PATIENT 3432 02:49:39,640 --> 02:49:42,320 ADVOCACY GROUPS AND OTHER 3433 02:49:42,320 --> 02:49:43,760 GOVERNMENT AGENCIES SUCH AS 3434 02:49:43,760 --> 02:49:49,080 NASA, DARPA, BARDA, THE V.A., 3435 02:49:49,080 --> 02:49:49,360 NSF. 3436 02:49:49,360 --> 02:49:51,040 THE OUTCOME OF THE PROGRAMS ARE 3437 02:49:51,040 --> 02:49:54,080 INTENDED TO BE CATALYTIC AND 3438 02:49:54,080 --> 02:49:55,840 TRANSFORMATIVE THAT RESULTS 3439 02:49:55,840 --> 02:49:57,480 TYPICALLY IN A PARADIGM SHIFT IN 3440 02:49:57,480 --> 02:49:57,840 THE FIELD. 3441 02:49:57,840 --> 02:50:00,960 SHOWN HERE ARE A LIST OF ALL THE 3442 02:50:00,960 --> 02:50:04,360 DIFFERENT PROGRAMS WE HAVE BEEN 3443 02:50:04,360 --> 02:50:06,040 ENGAGED IN AT THE LAST PROGRAM 3444 02:50:06,040 --> 02:50:09,600 UPDATE A YEAR AGO I SPOKE ABOUT 3445 02:50:09,600 --> 02:50:13,760 TISH CHIPS OR THE SYSTEMS FOR 3446 02:50:13,760 --> 02:50:14,160 DRUG SCREENING. 3447 02:50:14,160 --> 02:50:19,560 TODAY AND THIS AFTERNOON WE'LL 3448 02:50:19,560 --> 02:50:22,200 TALK ABOUT A SPECIALIZED 3449 02:50:22,200 --> 02:50:24,800 PLATFORM FOR AUTOMATED 3450 02:50:24,800 --> 02:50:25,200 CHEMISTRY. 3451 02:50:25,200 --> 02:50:28,240 THIS IS PRIMARILY GOING WITH THE 3452 02:50:28,240 --> 02:50:33,400 TAGLINE OF MORE TREATMENT TO ALL 3453 02:50:33,400 --> 02:50:36,440 PEOPLE BY EMPLOYING ANIMATION 3454 02:50:36,440 --> 02:50:40,720 AND ARTIFICIAL INTELLIGENCE HOW 3455 02:50:40,720 --> 02:50:43,320 TO DIVERSIFY OUR LIBRARIES AND 3456 02:50:43,320 --> 02:50:53,880 CHEMICAL COMPOUNDS WE'RE DOING. 3457 02:51:04,960 --> 02:51:12,640 AND LOOK AT THE EXTRAMURAL AND 3458 02:51:12,640 --> 02:51:16,640 INTRAMURAL PART OF NCATS AND ONE 3459 02:51:16,640 --> 02:51:24,320 WILL BE GIVEN BY DR. RUDNICKI 3460 02:51:24,320 --> 02:51:27,200 AND THE OFFICER FROM THE 3461 02:51:27,200 --> 02:51:30,040 PRECLINICAL INNOVATION WILL GIVE 3462 02:51:30,040 --> 02:51:32,800 THE INFRASTRUCTURE AND 3463 02:51:32,800 --> 02:51:36,640 ORGANIZATION THAT WE ARE 3464 02:51:36,640 --> 02:51:38,640 BUILDING CAPACITY WITHIN OUR 3465 02:51:38,640 --> 02:51:40,080 INTRAMURAL PROGRAM SO EXTRAMURAL 3466 02:51:40,080 --> 02:51:40,920 SCIENTISTS CAN GAIN ACCESS TO 3467 02:51:40,920 --> 02:51:42,240 THE RESOURCES. 3468 02:51:42,240 --> 02:51:50,320 WITH THAT OVER TO DR. RUDNICKI 3469 02:51:50,320 --> 02:51:52,320 TO TAKE OVER. 3470 02:51:52,320 --> 02:51:57,360 >>I'M LEADING THE EXTRAMURAL 3471 02:51:57,360 --> 02:52:00,200 SIDE OF THE PROGRAM. 3472 02:52:00,200 --> 02:52:10,760 THIS IS TO HAVE INTRAMURAL AND 3473 02:52:11,680 --> 02:52:13,240 EXTRAMURAL PROGRAMMING AND I'LL 3474 02:52:13,240 --> 02:52:15,080 START WITH UNMET NEED CENTRAL TO 3475 02:52:15,080 --> 02:52:20,960 THE DEVELOPMENT OF THE PROGRAMS. 3476 02:52:20,960 --> 02:52:26,680 WE THINK OF ALL CHEMICAL 3477 02:52:26,680 --> 02:52:27,720 MOLECULES. 3478 02:52:27,720 --> 02:52:30,200 THE SPACE IS HUGE, 10 TO THE 60 3479 02:52:30,200 --> 02:52:31,960 OF MOLECULES. 3480 02:52:31,960 --> 02:52:33,760 IN COMPARISON THE BIOLOGICAL 3481 02:52:33,760 --> 02:52:36,200 SPACE WHICH RESPONDS TO THE 3482 02:52:36,200 --> 02:52:38,560 MOLECULES WE WISH TO MODIFY 3483 02:52:38,560 --> 02:52:44,760 DISEASES THE SPACE IS SMALLER. 3484 02:52:44,760 --> 02:52:47,640 IT'S EASY TO MAP THE HUGE 3485 02:52:47,640 --> 02:52:48,880 CHEMICAL SPACE TO LARGER 3486 02:52:48,880 --> 02:52:53,080 BIOLOGICAL SPACE AND ONE OF THE 3487 02:52:53,080 --> 02:52:54,920 FOUR TRANSLATIONAL CHALLENGES. 3488 02:52:54,920 --> 02:52:58,480 THE REASON IS THE CHEMICAL TOOLS 3489 02:52:58,480 --> 02:52:59,840 WE HAVE TO EXPLORE CHEMICAL 3490 02:52:59,840 --> 02:53:03,960 SPACE IS NARROW. 3491 02:53:03,960 --> 02:53:05,960 IN ADDITION TO THE CHEMICAL 3492 02:53:05,960 --> 02:53:09,840 TOOLBOX WE'RE NOT VERY GOOD AT 3493 02:53:09,840 --> 02:53:14,960 PREDICTING CHEMICAL OR ACTIONS 3494 02:53:14,960 --> 02:53:20,440 AND WE HAVE TARGETS AND PRODUCE 3495 02:53:20,440 --> 02:53:24,400 CHEMICALS THAT ACHIEVE OR REDUCE 3496 02:53:24,400 --> 02:53:26,320 CHEMICALS AND STRUCTURES CHEAPLY 3497 02:53:26,320 --> 02:53:36,480 ENOUGH. 3498 02:53:39,640 --> 02:53:42,320 IT TAKES 10 TO 15 YEARS TO BRING 3499 02:53:42,320 --> 02:53:46,600 THE DRUG TO THE MARKET AND OVER 3500 02:53:46,600 --> 02:53:51,000 $2.6 BILLION. 3501 02:53:51,000 --> 02:53:52,720 IF WE COULD SHORTEN THIS WE 3502 02:53:52,720 --> 02:53:58,320 SHOULD BE ABLE TO ACCELERATE 3503 02:53:58,320 --> 02:53:59,480 DRUG DISCOVERY AND DEVELOPMENT. 3504 02:53:59,480 --> 02:54:08,680 HOW CAN WE DO THIS? 3505 02:54:08,680 --> 02:54:11,560 AND HAD A QUESTION, WHICH AREA 3506 02:54:11,560 --> 02:54:12,640 SHOULD NCATS FOCUS ON TO 3507 02:54:12,640 --> 02:54:23,040 ACCELERATE TRANSLATION. 3508 02:54:28,200 --> 02:54:29,880 AND THERE WAS EXPERIENCE IN 3509 02:54:29,880 --> 02:54:32,160 USING AUTOMATION IN BIOLOGY AND 3510 02:54:32,160 --> 02:54:35,560 LOOKING AT CHEMISTRY, DARPA HAD 3511 02:54:35,560 --> 02:54:37,760 ONE PROBLEM FOCUSSING ON 3512 02:54:37,760 --> 02:54:40,320 AUTOMATION AND CHEMISTRY. 3513 02:54:40,320 --> 02:54:42,640 NIGMS HAD A PROBLEM IN RELATION 3514 02:54:42,640 --> 02:54:45,160 TO GLYCOSCIENCE AND INDUSTRY HAD 3515 02:54:45,160 --> 02:54:47,600 EFFORTS FOCUSSING ON AUTOMATION 3516 02:54:47,600 --> 02:54:49,520 OF DIFFERENT CHEMICAL PROCESSES. 3517 02:54:49,520 --> 02:54:52,680 THE COMMON DENOMINATOR HERE WAS 3518 02:54:52,680 --> 02:54:54,320 NONE OF THESE EFFORTS WERE 3519 02:54:54,320 --> 02:54:58,080 FOCUSSING ON THE NEW 3520 02:54:58,080 --> 02:54:58,560 CHEMISTRIES. 3521 02:54:58,560 --> 02:55:01,840 THIS WAS ALL ABOUT KNOWN 3522 02:55:01,840 --> 02:55:02,120 CHEMISTRIES. 3523 02:55:02,120 --> 02:55:02,600 WE WERE INTERESTED IN 3524 02:55:02,600 --> 02:55:08,720 DISCOVERING NEW CHEMICAL SPACE. 3525 02:55:08,720 --> 02:55:09,560 WE ORGANIZED THE WORKSHOP AND 3526 02:55:09,560 --> 02:55:15,040 WERE INVITED BY A SPECTRUM OF 3527 02:55:15,040 --> 02:55:16,760 STAKEHOLDERS WITH EXPERTISE IN 3528 02:55:16,760 --> 02:55:18,600 CHEMISTRY IN AUTOMATION AND A.I. 3529 02:55:18,600 --> 02:55:21,360 AND MACHINE LEARNING AND ASKED 3530 02:55:21,360 --> 02:55:24,680 THEM WHAT MAIN ROAD BLOCKS ARE 3531 02:55:24,680 --> 02:55:30,320 TO AUTOMATING CHEMISTRY AND 3532 02:55:30,320 --> 02:55:32,920 WHERE THE LOW HANGING FRUITS 3533 02:55:32,920 --> 02:55:33,640 ARE. 3534 02:55:33,640 --> 02:55:38,320 THIS IS TO USE HOW AUTOMATION 3535 02:55:38,320 --> 02:55:41,320 HAS IMPACTED HIGH THROUGHPUT 3536 02:55:41,320 --> 02:55:42,920 SCREENING AND TISSUE CULTURE AT 3537 02:55:42,920 --> 02:55:43,640 NCATS. 3538 02:55:43,640 --> 02:55:46,320 IF YOU CARE THIS TO HOW 3539 02:55:46,320 --> 02:55:54,320 CHEMISTRY IS DONE, THIS LOOK 3540 02:55:54,320 --> 02:55:58,240 DIFFERENT AND IT DOESN'T REALLY 3541 02:55:58,240 --> 02:55:59,760 LOOK MUCH DIFFERENT FROM HOW IT 3542 02:55:59,760 --> 02:56:06,840 WAS DONE A HUNDRED YEARS AGO. 3543 02:56:06,840 --> 02:56:12,640 THE CULTURAL ROAD BLOCK IS 3544 02:56:12,640 --> 02:56:14,880 CHEMISTRIES WERE CRAFT LIKE 3545 02:56:14,880 --> 02:56:17,960 SCIENCE AND CHEMISTS CAN DEVELOP 3546 02:56:17,960 --> 02:56:22,440 BEAUTIFUL MOLECULES AND 3547 02:56:22,440 --> 02:56:28,040 FREQUENTLY THE CHOICE TO GO AND 3548 02:56:28,040 --> 02:56:30,320 DEVELOP INTUITION AND OF COURSE 3549 02:56:30,320 --> 02:56:33,960 THAT'S NOT SOMETHING YOU CAN 3550 02:56:33,960 --> 02:56:34,560 AUTOMATE EASILY. 3551 02:56:34,560 --> 02:56:36,440 IT'S LOGICAL THE FIELD WOULD 3552 02:56:36,440 --> 02:56:37,000 HAVE RESERVATION TOWARDS 3553 02:56:37,000 --> 02:56:47,200 AUTOMATION. 3554 02:56:51,120 --> 02:56:52,920 AND WE LOOKED AT HOW CHEMISTS 3555 02:56:52,920 --> 02:56:54,200 COLLECT DATA AND FOUND OUT IF 3556 02:56:54,200 --> 02:56:59,520 YOU WANT TO GO FROM THE IMAGE TO 3557 02:56:59,520 --> 02:57:01,320 THE LEFT -- SOMETHING THAT LOOKS 3558 02:57:01,320 --> 02:57:04,600 MORE LIKE THIS, WHICH IS MORE 3559 02:57:04,600 --> 02:57:06,320 APPROPRIATE FOR AUTOMATION, WE 3560 02:57:06,320 --> 02:57:09,440 REALLY NEED TO CHANGE THE WAY WE 3561 02:57:09,440 --> 02:57:11,240 CAPTURE DATA. 3562 02:57:11,240 --> 02:57:17,000 WE NEED TO HAVE MORE VALIDATION 3563 02:57:17,000 --> 02:57:18,800 AND INCREASE THE VISIBILITY AND 3564 02:57:18,800 --> 02:57:21,240 NEEDS TO BE ACCESSIBLE SO A WIDE 3565 02:57:21,240 --> 02:57:22,360 RANGE OF CHEMISTS CAN MINE 3566 02:57:22,360 --> 02:57:32,560 THROUGH IT. 3567 02:57:32,960 --> 02:57:34,960 WE NEED TO MAKE SURE THE VIDEO 3568 02:57:34,960 --> 02:57:38,320 OF THE DATA IS NOT BIASSED AND 3569 02:57:38,320 --> 02:57:39,920 STANDARDIZED AND NEED TO BE ABLE 3570 02:57:39,920 --> 02:57:42,200 TO ADD ADDITIONAL DATA POINTS 3571 02:57:42,200 --> 02:57:44,400 AND NEED CHEMICAL STRUCTURES 3572 02:57:44,400 --> 02:57:47,880 COMPATIBLE WITH MACHINE LEARNING 3573 02:57:47,880 --> 02:57:52,200 AND THE BEST DATA IS CAPTURED IN 3574 02:57:52,200 --> 02:57:54,840 REAL TIME. 3575 02:57:54,840 --> 02:57:56,800 THE DATA SHOULD BE AVAILABLE FOR 3576 02:57:56,800 --> 02:58:07,160 RESEARCHERS TO USE IT. 3577 02:58:10,040 --> 02:58:10,600 AUTOMATED CHEMISTRY WILL 3578 02:58:10,600 --> 02:58:13,200 LIBERATE CHEMISTS FROM MUNDANE 3579 02:58:13,200 --> 02:58:17,080 WORK AND BE ABLE TO SPEND MORE 3580 02:58:17,080 --> 02:58:18,640 TIME ON DIFFICULT SYNTHETIC 3581 02:58:18,640 --> 02:58:19,800 CHALLENGES AND INTELLECTUAL 3582 02:58:19,800 --> 02:58:20,040 PURSUITS. 3583 02:58:20,040 --> 02:58:25,120 ONCE WE HAVE INCREASED DATA 3584 02:58:25,120 --> 02:58:26,040 SHARING THIS WILL REDUCE 3585 02:58:26,040 --> 02:58:29,320 DUPLICATION AND ALLOW US TO 3586 02:58:29,320 --> 02:58:30,640 ADOPT NOVEL NOVELS IN 3587 02:58:30,640 --> 02:58:32,880 LABORATORIES MORE QUICKLY. 3588 02:58:32,880 --> 02:58:36,160 AND ONCE WE MINIMIZE HUMAN ERROR 3589 02:58:36,160 --> 02:58:44,240 IT SHOULD BE REPRODUCIBLE. 3590 02:58:44,240 --> 02:58:48,520 WHO WOULD BE THE DESIRED USERS? 3591 02:58:48,520 --> 02:58:51,400 EXPERT CHEMISTS TO DEDICATE MORE 3592 02:58:51,400 --> 02:58:54,880 TIME TO COMPLEX TASKS AND THEY 3593 02:58:54,880 --> 02:58:56,880 CAN INCREASE THEIR PRODUCTIVITY. 3594 02:58:56,880 --> 02:58:58,320 WHEN YOU APPLY AUTOMATION YOU 3595 02:58:58,320 --> 02:59:00,960 WANT TO DEVELOP A SYSTEM USED BY 3596 02:59:00,960 --> 02:59:07,960 MANY INCLUDING BIOLOGISTS AND 3597 02:59:07,960 --> 02:59:09,480 INFORMATICISTS AND ANYONE ABLE 3598 02:59:09,480 --> 02:59:12,800 TO FORMULATE A MOLECULAR 3599 02:59:12,800 --> 02:59:13,120 HYPOTHESIS. 3600 02:59:13,120 --> 02:59:15,760 WHAT WOULD BE THE OPTIMAL 3601 02:59:15,760 --> 02:59:16,400 OPERATION MODEL? 3602 02:59:16,400 --> 02:59:18,600 WE CAME THE CONCLUSION THE BEST 3603 02:59:18,600 --> 02:59:22,440 WOULD BE HAVE CAPITAL INTENSIVE 3604 02:59:22,440 --> 02:59:27,600 ROBOTIC AUTOMATION SITES AND TO 3605 02:59:27,600 --> 02:59:28,520 SUPPORT DEVELOPMENT OF 3606 02:59:28,520 --> 02:59:32,160 AFFORDABLE DEVICES BECAUSE NOT 3607 02:59:32,160 --> 02:59:34,720 EVERY CHEMICAL LAB CAN ADAPT TO 3608 02:59:34,720 --> 02:59:36,640 AUTOMATION BUT BE ABLE TO 3609 02:59:36,640 --> 02:59:38,320 AUTOMATE CERTAIN PROCESSES WOULD 3610 02:59:38,320 --> 02:59:44,280 BE HELPFUL. 3611 02:59:44,280 --> 02:59:46,960 AND WHAT WE HAVE LEARNS WE THEN 3612 02:59:46,960 --> 02:59:49,800 DECIDED TO PROPOSE DEVELOPMENT 3613 02:59:49,800 --> 02:59:54,640 OF PROGRAMS AS SPIRE AND THE 3614 02:59:54,640 --> 02:59:58,000 GOAL IS TO ADDRESS THE ROAD 3615 02:59:58,000 --> 03:00:00,840 BLOCKED BY COMBINING AUTOMATION, 3616 03:00:00,840 --> 03:00:02,360 ENGINEERING AND CHEMISTRY AND 3617 03:00:02,360 --> 03:00:04,280 MACHINE LEARNING AND BIOLOGICAL 3618 03:00:04,280 --> 03:00:06,120 SCREENING AND IN A NUTSHELL OUR 3619 03:00:06,120 --> 03:00:08,000 VISION WAS TO BE ABLE TO PREDICT 3620 03:00:08,000 --> 03:00:11,400 NOVEL STRUCTURES CAPABLE OF 3621 03:00:11,400 --> 03:00:14,120 MODULATING SPECIFIC TARGET OF 3622 03:00:14,120 --> 03:00:15,520 FEATURES AND SYNTHESIZE THE 3623 03:00:15,520 --> 03:00:17,560 STRUCTURES, TEST THEM IN 3624 03:00:17,560 --> 03:00:19,560 BIOLOGICAL ASSAYS AND ALL THE 3625 03:00:19,560 --> 03:00:21,920 DATA FEEDBACK IN THE SYSTEM SO 3626 03:00:21,920 --> 03:00:29,320 WE CAN REFINE THE PROCESS. 3627 03:00:29,320 --> 03:00:33,760 LONG THE WAY TO HAVE DISCOVERY 3628 03:00:33,760 --> 03:00:34,920 AND DEVELOPMENT AND GOING FROM 3629 03:00:34,920 --> 03:00:36,200 EMPIRICAL TO PREDICTIVE SCIENCE. 3630 03:00:36,200 --> 03:00:38,760 IF YOU WANT TO READ MORE ABOUT 3631 03:00:38,760 --> 03:00:41,400 EVERYTHING I RED SO FAR MUCH IS 3632 03:00:41,400 --> 03:00:43,280 PUBLISHED IN OUR NATURE REVIEW 3633 03:00:43,280 --> 03:00:46,320 DRUG DISCOVERY PAPER I HAVE 3634 03:00:46,320 --> 03:00:51,720 INDICATED HERE. 3635 03:00:51,720 --> 03:00:53,520 THERE'S EXTRAMURAL PROGRAMMING 3636 03:00:53,520 --> 03:00:56,120 AND EXTRAMURAL INFRASTRUCTURE, 3637 03:00:56,120 --> 03:00:58,160 COMPETENCE IS DESIGN TO BRING 3638 03:00:58,160 --> 03:01:00,240 NOVEL, SAFE AND EFFECTIVE 3639 03:01:00,240 --> 03:01:01,960 TREATMENTS TO ALL PATIENTS MORE 3640 03:01:01,960 --> 03:01:06,520 QUICKLY AND AT LOWER COSTS. 3641 03:01:06,520 --> 03:01:10,000 IT BUILDS ON EMERGING 3642 03:01:10,000 --> 03:01:11,520 TECHNOLOGIES, PROMOTES 3643 03:01:11,520 --> 03:01:12,080 MULTI-DISCIPLINARY 3644 03:01:12,080 --> 03:01:12,400 COLLABORATION. 3645 03:01:12,400 --> 03:01:15,160 WE WANT TO BE ABLE TO ENGAGE IN 3646 03:01:15,160 --> 03:01:16,720 THE WIDE SPECTRUM OF 3647 03:01:16,720 --> 03:01:18,640 STAKEHOLDERS AND THIS IS GOING 3648 03:01:18,640 --> 03:01:23,320 TO BE CRITICAL AND SHOWS THE 3649 03:01:23,320 --> 03:01:24,640 POWER THE TREMENDOUS POWER OF 3650 03:01:24,640 --> 03:01:27,280 ASPIRE IN BEING ABLE TO ADDRESS 3651 03:01:27,280 --> 03:01:27,920 HEALTH DISPARITIES AND ADVANCE 3652 03:01:27,920 --> 03:01:38,160 HEALTH EQUITY. 3653 03:01:39,320 --> 03:01:43,360 IT AIMS TO DELIVER ON THE NIH 3654 03:01:43,360 --> 03:01:47,760 MISSION TO PRODUCE 3655 03:01:47,760 --> 03:01:48,360 REPRODUCIBILITY AND BRIEFLY 3656 03:01:48,360 --> 03:01:54,360 GOING OVER THE PROOF OF CONCEPT. 3657 03:01:54,360 --> 03:01:57,560 IN 2018, NIH LAUNCHED THE 3658 03:01:57,560 --> 03:02:01,600 INITIATIVE CALLED HELPING TO END 3659 03:02:01,600 --> 03:02:03,240 ADDICTION LONG-TERM. 3660 03:02:03,240 --> 03:02:04,600 SO HEAL IS AN INCREDIBLE PUBLIC 3661 03:02:04,600 --> 03:02:05,600 HEALTH CHALLENGE AND THE GOAL IS 3662 03:02:05,600 --> 03:02:10,280 TO IMPROVE PREVENTION AND 3663 03:02:10,280 --> 03:02:11,080 TREATMENT STRATEGIES FOR OPIOID 3664 03:02:11,080 --> 03:02:14,720 USE DISORDER AND ADDICTION. 3665 03:02:14,720 --> 03:02:16,800 AND NCATS ASPIRE WAS ENVISIONED 3666 03:02:16,800 --> 03:02:19,480 AS BEING ABLE TO TACKLE SUCH 3667 03:02:19,480 --> 03:02:20,360 HEALTH EMERGENCIES. 3668 03:02:20,360 --> 03:02:25,200 WE OBTAINED HEAL FUNDING AND USE 3669 03:02:25,200 --> 03:02:30,320 IT FOR PROOF OF PRINCIPLE BY 3670 03:02:30,320 --> 03:02:32,480 COMBINING SYNTHETIC CHEMISTRY 3671 03:02:32,480 --> 03:02:35,800 AND A.I. LEARNING WE CAN 3672 03:02:35,800 --> 03:02:41,040 DISCOVER NEW TREATMENTS FOR 3673 03:02:41,040 --> 03:02:45,520 PAIN, OPIOID USE DISORDER. 3674 03:02:45,520 --> 03:02:48,040 WE DESIGN A SET OF CHALLENGES 3675 03:02:48,040 --> 03:02:51,080 AND THE REASON WE SELECTED 3676 03:02:51,080 --> 03:02:54,320 CHALLENGES AS A FUNDING 3677 03:02:54,320 --> 03:02:55,960 MECHANISM IS THE MECHANISM 3678 03:02:55,960 --> 03:02:58,320 SUPPORTS EXECUTION OF THE MOST 3679 03:02:58,320 --> 03:03:01,040 INNOVATIVE IDEAS AT THE PHASE 3680 03:03:01,040 --> 03:03:02,320 APPROPRIATE TO ADDRESS HEALTH 3681 03:03:02,320 --> 03:03:05,960 EMERGENCY. 3682 03:03:05,960 --> 03:03:11,360 AND PEOPLE FROM ALL WALKS OF 3683 03:03:11,360 --> 03:03:14,320 LIFE CAN APPLY AND NOT ONLY FOR 3684 03:03:14,320 --> 03:03:17,960 THOSE SCIENTISTS THAT ARE 3685 03:03:17,960 --> 03:03:20,600 TYPICAL NIH APPLICANTS. 3686 03:03:20,600 --> 03:03:27,000 THE FIVE CHALLENGES WERE DESIGN 3687 03:03:27,000 --> 03:03:31,360 AND THEY WERE DESIGN TO ADDRESS 3688 03:03:31,360 --> 03:03:32,640 DIFFERENT AREAS IMPORTANT TO BE 3689 03:03:32,640 --> 03:03:34,120 DEVELOPED TO TACKLE THE BIG 3690 03:03:34,120 --> 03:03:35,440 HEALTH CRISIS. 3691 03:03:35,440 --> 03:03:38,760 THE FIRST WAS TO DEVELOP A 3692 03:03:38,760 --> 03:03:42,200 DATABASE TO CONTAIN THE 3693 03:03:42,200 --> 03:03:45,000 CHEMICAL, BIOLOGICAL AND 3694 03:03:45,000 --> 03:03:49,520 CLINICAL DATA RELEVANT TO PAIN 3695 03:03:49,520 --> 03:03:51,440 AND OVERDOSE AND THE DESIGN OF 3696 03:03:51,440 --> 03:03:56,880 NOTEBOOK THAT'S GOING TO BE ABLE 3697 03:03:56,880 --> 03:03:59,240 TO COLLECT ALL THE MOLECULES 3698 03:03:59,240 --> 03:04:04,240 RELEVANT TO THE AREA AND THE 3699 03:04:04,240 --> 03:04:05,680 THIRD CHALLENGE WAS TO DEVELOP 3700 03:04:05,680 --> 03:04:07,720 AND READ THE TWO DATABASES AND 3701 03:04:07,720 --> 03:04:09,680 MINE THE DATA AND THE FOURTH WAS 3702 03:04:09,680 --> 03:04:12,840 TO DESIGN BIOLOGICAL ASSAYS THAT 3703 03:04:12,840 --> 03:04:18,800 ARE GOING TO BE RELEVANT TO PAIN 3704 03:04:18,800 --> 03:04:20,520 AND OVERDOSE. 3705 03:04:20,520 --> 03:04:23,960 IF ANYONE HAS AN IDEA HOW TO 3706 03:04:23,960 --> 03:04:26,400 START PUTTING THE DIFFERENT 3707 03:04:26,400 --> 03:04:31,360 MODULES TOGETHER TO PROPOSE IT. 3708 03:04:31,360 --> 03:04:38,720 AFTER WE ANNOUNCED THE WINNERS, 3709 03:04:38,720 --> 03:04:41,120 THIS WAS A DESIGN STAGE AND WE 3710 03:04:41,120 --> 03:04:42,320 WERE INTERESTED IN THE NEXT 3711 03:04:42,320 --> 03:04:44,040 STAGE ON THE PROTOTYPE 3712 03:04:44,040 --> 03:04:44,360 DEVELOPMENT. 3713 03:04:44,360 --> 03:04:47,160 WE INVITED ALL THE WINNERS TO 3714 03:04:47,160 --> 03:04:49,640 COME TO NIH AND INTERACT WITH 3715 03:04:49,640 --> 03:04:54,800 EACH OTHER AND MAYBE FORM NEW 3716 03:04:54,800 --> 03:05:04,480 TEAMS SO -- AND WHEN WE HAD 3717 03:05:04,480 --> 03:05:06,680 REDUCTION TO CHALLENGE WE HAD 3718 03:05:06,680 --> 03:05:08,240 TALENTED INNOVATORS TASKED TO 3719 03:05:08,240 --> 03:05:10,400 PUT THE MODELS TOGETHER IN A 3720 03:05:10,400 --> 03:05:17,480 WORKING PROTOTYPE. 3721 03:05:17,480 --> 03:05:23,800 LAST OCTOBER WE ANNOUNCED OUR 3722 03:05:23,800 --> 03:05:29,680 GRAND PRIZE WINNER. 3723 03:05:29,680 --> 03:05:35,880 AND THEY HAVE HIGH THROUGHPUT 3724 03:05:35,880 --> 03:05:38,280 SYNTHESIS WITH A MACROSCOPY 3725 03:05:38,280 --> 03:05:40,360 APPROACH AND THE RUNNER-UP TEAM 3726 03:05:40,360 --> 03:05:42,360 WAS FROM A COMPANY AND TOGETHER 3727 03:05:42,360 --> 03:05:45,560 WITH THEIR COLLABORATORS FROM 3728 03:05:45,560 --> 03:05:47,400 THE UNIVERSITY OF GLASGOW AND 3729 03:05:47,400 --> 03:05:48,200 ARIZONA STATE UNIVERSITY THEY 3730 03:05:48,200 --> 03:05:54,600 DESIGN AN AUTOMATED CHEMICAL 3731 03:05:54,600 --> 03:05:58,320 SYNTHESIS MODULE FOR AN ASSAY 3732 03:05:58,320 --> 03:06:03,240 BASED MODEL. 3733 03:06:03,240 --> 03:06:06,200 THESE HAVE VALIDATED THE 3734 03:06:06,200 --> 03:06:07,960 PLATFORMS FURTHER TESTING THEIR 3735 03:06:07,960 --> 03:06:18,520 MOLECULES IN BIOLOGICAL ASSAYS. 3736 03:06:22,800 --> 03:06:24,640 AND THE NCATS TEAM AND 3737 03:06:24,640 --> 03:06:29,080 LABORATORY BEGAN TO ESTABLISH A 3738 03:06:29,080 --> 03:06:34,080 PLATFORM OF PHYSICAL AND VIRTUAL 3739 03:06:34,080 --> 03:06:36,640 MODULES FOR SYNTHETIC CHEMISTRY 3740 03:06:36,640 --> 03:06:39,200 AND ENGINEERING AND INFORMATICS 3741 03:06:39,200 --> 03:06:41,640 AND BIOLOGICAL TESTING. 3742 03:06:41,640 --> 03:06:44,760 THIS IS NOT THE POINT WHERE WE 3743 03:06:44,760 --> 03:06:45,840 FOCUSSED ON A SPECIFIC AREA OF 3744 03:06:45,840 --> 03:06:48,440 PAIN AND WANTED TO EXPAND THE 3745 03:06:48,440 --> 03:06:49,160 PROGRAM TO BE ABLE TO ADDRESS 3746 03:06:49,160 --> 03:06:56,280 ANY TRANSLATIONAL CHALLENGES. 3747 03:06:56,280 --> 03:06:56,880 WE DEVELOPED COLLABORATIVE 3748 03:06:56,880 --> 03:07:01,960 RESEARCH PROGRAM WHERE THE 3749 03:07:01,960 --> 03:07:05,880 INVITED RESEARCHERS TO TEAM UP 3750 03:07:05,880 --> 03:07:07,280 WITH OUR INTRAMURAL TEAM AND 3751 03:07:07,280 --> 03:07:12,240 HAVE THEN DEVELOP VIA PLATFORM. 3752 03:07:12,240 --> 03:07:17,400 WE DEVELOPED TWO INITIATIVES. 3753 03:07:17,400 --> 03:07:20,320 THE FIRST WAS FOCUSSING ON THE 3754 03:07:20,320 --> 03:07:22,360 PHYSICAL PLATFORM OR MODULE THAT 3755 03:07:22,360 --> 03:07:30,320 WILL BE INCORPORATED IN THE 3756 03:07:30,320 --> 03:07:35,640 ASPIRE PLATFORM. 3757 03:07:35,640 --> 03:07:40,080 THE SECOND FOCUSSED ON THE 3758 03:07:40,080 --> 03:07:45,800 VIRTUAL MODELS INCORPORATED IN 3759 03:07:45,800 --> 03:07:47,600 THE ASPIRE PLATFORM. 3760 03:07:47,600 --> 03:07:52,600 IT'S IMPORTANT TO REMEMBER THIS 3761 03:07:52,600 --> 03:07:53,800 IS TARGETED. 3762 03:07:53,800 --> 03:07:58,320 WE OPENED THE FIELD TO ANY 3763 03:07:58,320 --> 03:08:02,000 TRANSLATIONAL PROBLEM. 3764 03:08:02,000 --> 03:08:06,320 I THINK I WILL STOP HERE AND 3765 03:08:06,320 --> 03:08:08,560 PASS IT TO MICHAEL TO GIVE YOU 3766 03:08:08,560 --> 03:08:12,360 MORE UPDATES ON THE INTRAMURAL 3767 03:08:12,360 --> 03:08:14,200 SIDE OF THE PROGRAM AND HOW OUR 3768 03:08:14,200 --> 03:08:16,840 ORDs ARE HELPING OUR AS SPIRE 3769 03:08:16,840 --> 03:08:26,520 TEAM TO BUILD THE PLATFORM. 3770 03:08:26,520 --> 03:08:29,480 >>THESE DONE A WONDERFUL JOB 3771 03:08:29,480 --> 03:08:32,200 EXPLAINING IT'S A COLLABORATIVE 3772 03:08:32,200 --> 03:08:33,600 EFFORT AND MAKE NCATS SOMEWHAT 3773 03:08:33,600 --> 03:08:35,120 UNIQUE WE HAVE WHAT I LIKE TO 3774 03:08:35,120 --> 03:08:40,960 CALL AN INSIDE-OUT APPROACH AND 3775 03:08:40,960 --> 03:08:42,600 HAVE INTRAMURAL INVOLVEMENT BUT 3776 03:08:42,600 --> 03:08:45,120 CAN'T DO THESE THINGS WITHOUT 3777 03:08:45,120 --> 03:08:46,800 EXTRAMURAL AWARDEES AND IT'S 3778 03:08:46,800 --> 03:08:47,480 IMPORTANT TO TALK ABOUT DATA 3779 03:08:47,480 --> 03:08:50,320 SHARING AND ACCESS HOW TO 3780 03:08:50,320 --> 03:08:54,320 PROVIDE AN ENVIRONMENT CONDUCIVE 3781 03:08:54,320 --> 03:09:03,760 TO SCIENTIFIC RESEARCH AT SCALE. 3782 03:09:03,760 --> 03:09:07,000 >>ON ASPIRE IT'S TO REIMAGINE 3783 03:09:07,000 --> 03:09:09,320 THE ENTIRE ECO SYSTEM. 3784 03:09:09,320 --> 03:09:11,680 YOU HAVE INTEGRATED AUTOMATED 3785 03:09:11,680 --> 03:09:11,960 SOLUTION. 3786 03:09:11,960 --> 03:09:15,000 WE'RE LOOKING AT WHAT TYPICAL 3787 03:09:15,000 --> 03:09:17,880 AUTOMATED BENCHES LOOK LIKE NOW 3788 03:09:17,880 --> 03:09:21,640 IN LABORATORIES AND ON THE RIGHT 3789 03:09:21,640 --> 03:09:27,400 IS WHERE THE ORIGINAL SYNTHESIS 3790 03:09:27,400 --> 03:09:30,160 LABORATORY WE WORKED WITH AND ON 3791 03:09:30,160 --> 03:09:34,320 TOP A COMPANY AND THEIR FULLY 3792 03:09:34,320 --> 03:09:40,880 INTEGRATED ECO SYSTEM. 3793 03:09:40,880 --> 03:09:41,760 IT'S NOT ONE OR THE OTHER WE 3794 03:09:41,760 --> 03:09:51,160 NEED BOTH. 3795 03:09:51,160 --> 03:10:01,640 WE NEEDED AUTO MISED TEMPLATE 3796 03:10:05,080 --> 03:10:07,720 AND WE MENTIONED IN REGARD TO 3797 03:10:07,720 --> 03:10:10,120 CHEMISTS AND WE DON'T WANT TO 3798 03:10:10,120 --> 03:10:11,520 INFLICT AUTOMATION UPON THE 3799 03:10:11,520 --> 03:10:11,960 CHEMISTS. 3800 03:10:11,960 --> 03:10:13,920 WE WANT TO MAKE SURE THEY 3801 03:10:13,920 --> 03:10:15,480 EMBRACE IT BECAUSE IF THEY DON'T 3802 03:10:15,480 --> 03:10:16,640 EMBRACE IT WE HAVE A LIMITED 3803 03:10:16,640 --> 03:10:23,400 CHANCE OF SUCCESS. 3804 03:10:23,400 --> 03:10:25,440 THE OVER ALL GOAL IS TO DEVELOP 3805 03:10:25,440 --> 03:10:28,800 NEW THERAPIES THROUGH EXECUTION 3806 03:10:28,800 --> 03:10:30,320 AND CHEMICAL SYNTHESIS BY 3807 03:10:30,320 --> 03:10:31,720 GREATLY INCREASING ITERATION 3808 03:10:31,720 --> 03:10:33,640 TIME AND ANALYZING PARADIGM. 3809 03:10:33,640 --> 03:10:35,080 AS THE BECOME POPULAR TO 3810 03:10:35,080 --> 03:10:35,880 DISCUSS. 3811 03:10:35,880 --> 03:10:37,480 IT'S A NICE PAPER THAT CAME OUT 3812 03:10:37,480 --> 03:10:40,280 NOW IN 2019. 3813 03:10:40,280 --> 03:10:44,760 AND REALLY I THINK TO THE POINT 3814 03:10:44,760 --> 03:10:46,600 MADE IT PLAYS WELL TO NCATS' 3815 03:10:46,600 --> 03:10:47,160 STRENGTH. 3816 03:10:47,160 --> 03:10:50,160 WE'VE GOTTEN GOOD ON BIOLOGICAL 3817 03:10:50,160 --> 03:10:54,000 SCREENING AND HAVE GIVEN 3818 03:10:54,000 --> 03:10:55,680 PREVIOUS PRESENTATIONS AND HAVE 3819 03:10:55,680 --> 03:10:58,000 MED CAM INVOLVEMENT AND EFFORT 3820 03:10:58,000 --> 03:10:59,360 TO DO PROPER ANALYSIS. 3821 03:10:59,360 --> 03:11:02,200 HOW DO WE COMBINE THIS INTO A 3822 03:11:02,200 --> 03:11:03,280 CONTINUOUS PROCESS AND PLAY TO 3823 03:11:03,280 --> 03:11:06,800 THE STRENGTHS AND RECOGNIZE 3824 03:11:06,800 --> 03:11:08,160 THERE ARE GAPS IN PARTICULAR ON 3825 03:11:08,160 --> 03:11:10,800 THE AUTOMATION OF CHEMISTRY 3826 03:11:10,800 --> 03:11:11,160 ITSELF. 3827 03:11:11,160 --> 03:11:12,400 TO GET THIS DONE WE NEED TO 3828 03:11:12,400 --> 03:11:14,280 CREATE FROM THE GROUND FLOOR A 3829 03:11:14,280 --> 03:11:24,480 SMART LAB. 3830 03:11:40,280 --> 03:11:41,040 IT BEGS THE QUESTION FOR THIS 3831 03:11:41,040 --> 03:11:42,840 AND THE IDEA WE'RE TALKING ABOUT 3832 03:11:42,840 --> 03:11:46,080 AND NONE OF THE IDEAS ARE 3833 03:11:46,080 --> 03:11:46,760 RELATIVELY NOVEL WHAT'S MISSING 3834 03:11:46,760 --> 03:11:47,920 IS THE IMPLEMENTATION. 3835 03:11:47,920 --> 03:11:51,600 TO MAKE THE IDEA OF A SMART LOB 3836 03:11:51,600 --> 03:11:54,200 POSSIBLE WE NEEDED RADICAL 3837 03:11:54,200 --> 03:11:55,800 IMPROVEMENTS AND REAGENT 3838 03:11:55,800 --> 03:11:57,240 HANDLING AND FEEDBACK 3839 03:11:57,240 --> 03:11:59,960 TECHNOLOGIES AND ISOLATION 3840 03:11:59,960 --> 03:12:01,960 CAPABILITIES AND NEED PROCESSES 3841 03:12:01,960 --> 03:12:04,400 IN REGARD TO CHEMICAL REACTIONS 3842 03:12:04,400 --> 03:12:06,600 AND AUTOMATIC CHARACTERIZATIONS. 3843 03:12:06,600 --> 03:12:09,240 IN SOME CASES THEY'RE IN THE 3844 03:12:09,240 --> 03:12:10,760 WEEDS ELEMENT BUT TO AUTOMATE 3845 03:12:10,760 --> 03:12:13,720 THE DAY IN, DAY OUT PROCESSES A 3846 03:12:13,720 --> 03:12:14,840 CHEMIST WILL DO THAT WILL LEAD 3847 03:12:14,840 --> 03:12:16,080 US TO A CHANCE OF SUCCESS. 3848 03:12:16,080 --> 03:12:18,160 WHAT WILL THAT LOOK LIKE FROM A 3849 03:12:18,160 --> 03:12:22,320 PRACTICAL PERSPECTIVE FROM THE 3850 03:12:22,320 --> 03:12:26,240 APPROACHES NCATS ARE TAKING. 3851 03:12:26,240 --> 03:12:30,640 WE'RE LOOKING FOR A BENCH TOP 3852 03:12:30,640 --> 03:12:33,160 EXPLORER AND LOOK AT SAMPLES 3853 03:12:33,160 --> 03:12:34,360 FROM THE DEVELOPMENT OF NEW 3854 03:12:34,360 --> 03:12:37,120 CHEMISTRY AND TRACKING TO 3855 03:12:37,120 --> 03:12:37,600 PRODUCE THIS TESTABLE 3856 03:12:37,600 --> 03:12:45,880 HYPOTHESIS. 3857 03:12:45,880 --> 03:12:47,840 IN CONVERT WITH AN ANALYTICS 3858 03:12:47,840 --> 03:12:50,280 PLATFORM AND THIS IS A KEY 3859 03:12:50,280 --> 03:12:51,680 COMPONENT AND MOST CHEMISTRY 3860 03:12:51,680 --> 03:12:54,320 THESE DAYS STARTS IN A VIRTUAL 3861 03:12:54,320 --> 03:12:56,600 ENVIRONMENT SO WE WANT TO BRING 3862 03:12:56,600 --> 03:13:00,080 AND COMBINED THE PHYSICAL 3863 03:13:00,080 --> 03:13:02,120 CAPABILITIES OF THE BENCH WITH A 3864 03:13:02,120 --> 03:13:04,000 VIRTUAL ENVIRONMENT TO PLAN AND 3865 03:13:04,000 --> 03:13:08,160 ANALYZE RESULTS AND IT RATE OVER 3866 03:13:08,160 --> 03:13:08,360 TIME. 3867 03:13:08,360 --> 03:13:09,400 NCATS PUT A LOT OF RESOURCES 3868 03:13:09,400 --> 03:13:14,600 INTO THE DEVELOPMENT OF THE 3869 03:13:14,600 --> 03:13:16,760 COMPUTATIONAL PLATFORM AICP. 3870 03:13:16,760 --> 03:13:18,960 ONE IS OUR PHYSICAL LAB SPACE 3871 03:13:18,960 --> 03:13:22,360 WASN'T READY AND FROM A 3872 03:13:22,360 --> 03:13:24,000 COLLABORATIVE ASPECT AND FOLKS 3873 03:13:24,000 --> 03:13:27,360 REFERRING TO ALL OF US AND N3C, 3874 03:13:27,360 --> 03:13:29,720 THEY'RE AREAS WE'VE SHOWN THE 3875 03:13:29,720 --> 03:13:34,320 POWER OF COLLABORATIVE 3876 03:13:34,320 --> 03:13:36,160 ENVIRONMENT ENGAGE IN SCIENCE 3877 03:13:36,160 --> 03:13:37,960 AND BUILD OUT THE CAPABILITY TO 3878 03:13:37,960 --> 03:13:38,760 HAVE A COLLABORATIVE ENVIRONMENT 3879 03:13:38,760 --> 03:13:42,760 FOR RESEARCHERS TO WORK IN. 3880 03:13:42,760 --> 03:13:45,440 WE THINK ABOUT THE FRAMEWORK 3881 03:13:45,440 --> 03:13:48,200 WE'RE TALKING ABOUT REFERENCED 3882 03:13:48,200 --> 03:13:49,720 AND FROM THE EXTRAMURAL SIDE 3883 03:13:49,720 --> 03:13:52,280 FIRST WE WANT TO AUTOMATE THE 3884 03:13:52,280 --> 03:13:52,640 BENCH. 3885 03:13:52,640 --> 03:13:54,920 WE HAVE THE DASHBOARD AND USING 3886 03:13:54,920 --> 03:13:56,360 THE INTERNET OF THINGS AND 3887 03:13:56,360 --> 03:13:59,200 ARCHITECTURE TO TAKE LAB 3888 03:13:59,200 --> 03:14:00,440 EQUIPMENT AND CAPTURE 3889 03:14:00,440 --> 03:14:02,040 INFORMATION FROM LAB EQUIPMENT 3890 03:14:02,040 --> 03:14:03,720 THE CHEMISTS ARE USING AND IN 3891 03:14:03,720 --> 03:14:05,280 PARTICULAR FOLKS IN CHEMISTRY 3892 03:14:05,280 --> 03:14:07,120 AUTOMATION TO HAVE THAT IN AN 3893 03:14:07,120 --> 03:14:08,920 INFRASTRUCTURE AND THEN WE ALSO 3894 03:14:08,920 --> 03:14:11,160 HAVE THE LABORATORY ITSELF. 3895 03:14:11,160 --> 03:14:14,120 WE'RE SHOWING IN THE TOP RIGHT A 3896 03:14:14,120 --> 03:14:16,360 RENDERING WHEN WE FIRST GOT THE 3897 03:14:16,360 --> 03:14:18,840 PLANS FOR OUR C1 LAB SPACE AND 3898 03:14:18,840 --> 03:14:21,360 REFERS TO OUR 9800 BUILDING 3899 03:14:21,360 --> 03:14:22,720 HOPEFULLY WHEN COUNCIL'S IN 3900 03:14:22,720 --> 03:14:26,160 PERSON WE'D LOVE TO GIVE THEM A 3901 03:14:26,160 --> 03:14:29,080 TOUR AND WE HAVE PLANNED MODULES 3902 03:14:29,080 --> 03:14:33,360 FOR DIFFERENT ELEMENTS OF THE 3903 03:14:33,360 --> 03:14:34,680 ASPIRE PROCESS AND THE FRAMEWORK 3904 03:14:34,680 --> 03:14:37,560 IF YOU CAN ADVANCE ONE SLIDE, WE 3905 03:14:37,560 --> 03:14:39,360 NEED BOTH OF THESE CONNECTED. 3906 03:14:39,360 --> 03:14:43,160 THIS IS WHERE THE ASPIRE 3907 03:14:43,160 --> 03:14:43,920 COMPUTATIONAL PLATFORM IS 3908 03:14:43,920 --> 03:14:44,160 CRITICAL. 3909 03:14:44,160 --> 03:14:47,440 IT'S GOING TO BE WHAT LINKS NOT 3910 03:14:47,440 --> 03:14:49,000 JUST FOR NCATS RESEARCHERS AND 3911 03:14:49,000 --> 03:14:51,000 EXTERNAL RESEARCHERS THE ABILITY 3912 03:14:51,000 --> 03:14:53,320 TO INITIATE EXPERIMENTS 3913 03:14:53,320 --> 03:14:53,840 VIRTUALLY THAT EXECUTE 3914 03:14:53,840 --> 03:14:56,680 PHYSICALLY AND GET THE RESULTS 3915 03:14:56,680 --> 03:15:00,080 AND RINSE REPEAT UNTIL HOPEFULLY 3916 03:15:00,080 --> 03:15:02,640 LEADING TO NEW THERAPEUTIC 3917 03:15:02,640 --> 03:15:02,880 DISCOVERY. 3918 03:15:02,880 --> 03:15:06,320 THERE'S WORK TO DO TO GET THERE 3919 03:15:06,320 --> 03:15:10,120 WE STARTED ON. 3920 03:15:10,120 --> 03:15:14,480 WE'RE LOOKING TO HAVE THE 3921 03:15:14,480 --> 03:15:18,160 INSILICO DESIGN AND PREP IT, 3922 03:15:18,160 --> 03:15:22,400 ISOLATE IT, PURIFY IT AND THIS 3923 03:15:22,400 --> 03:15:26,200 IS WHAT WE DRUG DISCOVERY DMTA 3924 03:15:26,200 --> 03:15:27,760 CYCLE AND THE INDIVIDUAL STEPS 3925 03:15:27,760 --> 03:15:29,200 THAT HAVE TO TAKE PLACE AND 3926 03:15:29,200 --> 03:15:32,040 IDEALLY BE AUTOMATED OVER TIME. 3927 03:15:32,040 --> 03:15:36,520 WHERE WE'RE AHEAD OF NCATS AND 3928 03:15:36,520 --> 03:15:39,000 HAVE A LEG UP IS ON THE 3929 03:15:39,000 --> 03:15:39,560 BIOLOGICAL TEST. 3930 03:15:39,560 --> 03:15:42,080 WE'VE DONE EXTENSIVE AUTOMATION 3931 03:15:42,080 --> 03:15:45,200 GOING ON CLOSE TO TWO DECADES. 3932 03:15:45,200 --> 03:15:47,120 IT PLAYS TO OUR STRENGTHS. 3933 03:15:47,120 --> 03:15:50,800 WE'RE INVOLVED IN EVERY STEP 1-4 3934 03:15:50,800 --> 03:15:53,680 FROM THE DESIGN PREP AND 3935 03:15:53,680 --> 03:15:55,920 ISOLATION IN A MANUAL SPACE AND 3936 03:15:55,920 --> 03:16:05,600 HOW TO AUTOMATE THE PROCESSES. 3937 03:16:05,960 --> 03:16:08,680 THIS IS SHOWING THE SPACE THE 3938 03:16:08,680 --> 03:16:12,120 ASPIRE TEAM WAS IN BEFORE WE GOT 3939 03:16:12,120 --> 03:16:13,680 CLEARANCE TO START CONSTRUCTION. 3940 03:16:13,680 --> 03:16:15,920 ONE SILVER LINING OF THE 3941 03:16:15,920 --> 03:16:19,720 PANDEMIC SINCE WE HAD TO SEND 3942 03:16:19,720 --> 03:16:20,920 EVERYONE HOME WE HAD TO START 3943 03:16:20,920 --> 03:16:21,480 CONSTRUCTION. 3944 03:16:21,480 --> 03:16:23,160 ONE THING THAT WENT TO PLAN 3945 03:16:23,160 --> 03:16:24,640 DURING THE COVID-19 PERIOD WAS 3946 03:16:24,640 --> 03:16:34,960 OUR CONSTRUCTION. 3947 03:16:37,960 --> 03:16:39,720 THIS WAS COMPLETION AROUND 2021. 3948 03:16:39,720 --> 03:16:43,240 AGAIN WE WERE VERY EXCITED ABOUT 3949 03:16:43,240 --> 03:16:45,560 TO HAVE OUR LAB SPACE, NICE OPEN 3950 03:16:45,560 --> 03:16:45,840 LABS. 3951 03:16:45,840 --> 03:16:50,480 IF YOU WANT TO ADVANCE ONE MORE 3952 03:16:50,480 --> 03:16:52,040 SLIDE A YEAR LATER AND THE 3953 03:16:52,040 --> 03:16:52,560 CURRENT STATE. 3954 03:16:52,560 --> 03:16:56,760 PART OF THE REASON THE LAB IS SO 3955 03:16:56,760 --> 03:16:57,760 POPULATED ALL THING NCATS WE 3956 03:16:57,760 --> 03:16:59,360 HAVE TO BE DYNAMIC. 3957 03:16:59,360 --> 03:17:03,680 A LOT OF THE EQUIPMENT IS PART 3958 03:17:03,680 --> 03:17:04,320 OF THE ANTIVIRAL PREVENTION 3959 03:17:04,320 --> 03:17:06,200 PROGRAM AND THAT WAS A RESPONSE 3960 03:17:06,200 --> 03:17:07,720 FROM THE COVID PANDEMIC. 3961 03:17:07,720 --> 03:17:09,880 WE NEEDED LAB SPACE QUICKLY. 3962 03:17:09,880 --> 03:17:12,480 WE WERE ABLE TO PIVOT FAST AND 3963 03:17:12,480 --> 03:17:14,000 OCCUPY THAT AND IN THE BACK END 3964 03:17:14,000 --> 03:17:16,240 OF THE PITCH YOU SEE THE ASPIRE 3965 03:17:16,240 --> 03:17:17,960 AND PHYSICAL MODULES COMING TO 3966 03:17:17,960 --> 03:17:27,120 LIFE FOR THE PROGRAM. 3967 03:17:27,120 --> 03:17:33,280 WHAT WE'RE LOOKING TO DO IS 3968 03:17:33,280 --> 03:17:36,480 AUTONOMOUS ASSAY AND CHEMICAL 3969 03:17:36,480 --> 03:17:36,800 SYNTHESIS. 3970 03:17:36,800 --> 03:17:39,040 THIS IS AN AREA NCATS HAS 3971 03:17:39,040 --> 03:17:40,840 EXPERIENCE IN AND GREENS ARE 3972 03:17:40,840 --> 03:17:42,440 INPUTS AND BLUE IS OUTPUTS AND 3973 03:17:42,440 --> 03:17:49,240 THEY ACT AS INPUT FOR HIGH 3974 03:17:49,240 --> 03:17:50,200 THROUGHPUT AND VIRTUAL SCREENS 3975 03:17:50,200 --> 03:17:51,120 AND WE'VE HAD SUCCESS. 3976 03:17:51,120 --> 03:17:53,920 THE DATA IS ANALYZED TO 3977 03:17:53,920 --> 03:17:55,160 DETERMINE OPTIMAL ASSAY 3978 03:17:55,160 --> 03:17:56,720 CONDITIONS AND GENERATE RESPONSE 3979 03:17:56,720 --> 03:17:58,320 CURVES YOU SEE IN THE DATA 3980 03:17:58,320 --> 03:17:58,920 ANALYSIS PIECE. 3981 03:17:58,920 --> 03:18:02,960 THE RESULTING DATA IS USED TO 3982 03:18:02,960 --> 03:18:06,640 DETERMINE POTENTIAL MOLECULES TO 3983 03:18:06,640 --> 03:18:11,520 BE SYNTHESIZED AND IT'S AN 3984 03:18:11,520 --> 03:18:15,320 ITERATIVE CYCLE AND WE'RE 3985 03:18:15,320 --> 03:18:18,640 WORKING ON THE CHEMICAL 3986 03:18:18,640 --> 03:18:20,280 SYNTHESIS AND WOULD HAVE STEPS 3987 03:18:20,280 --> 03:18:22,360 LATER TO AUTOMATE CHEMICAL 3988 03:18:22,360 --> 03:18:32,640 SYNTHESIS THERE. 3989 03:18:37,400 --> 03:18:46,120 AND THE EXTRAMURAL PROJECT HELPS 3990 03:18:46,120 --> 03:18:49,440 BUILD A MORE INNOVATIVE AND 3991 03:18:49,440 --> 03:18:51,320 ROBUST PLATFORM THROUGH TEAM 3992 03:18:51,320 --> 03:18:54,160 SCIENCE TO ENABLE THE CHEMISTRY 3993 03:18:54,160 --> 03:18:54,880 DODA TALKED ABOUT AND TALKED 3994 03:18:54,880 --> 03:19:00,720 ABOUT THE FIVE AWARDEES. 3995 03:19:00,720 --> 03:19:02,840 THE FIVE AWARDEES AREN'T 3996 03:19:02,840 --> 03:19:05,840 EXISTING IN A VACUUM. 3997 03:19:05,840 --> 03:19:07,960 THEY'RE FILLING KEY ROLES AND 3998 03:19:07,960 --> 03:19:13,240 THE FIRST AWARDEES WAS PURDUE 3999 03:19:13,240 --> 03:19:15,040 UNIVERSITY WITH DR. GRAM COOKS 4000 03:19:15,040 --> 03:19:18,320 WITH THE GOAL OF TRANSFERRING 4001 03:19:18,320 --> 03:19:23,440 HARDWARE TO NCATS IN THE SECOND 4002 03:19:23,440 --> 03:19:24,240 PHASE FOR REACTION SCREENING AND 4003 03:19:24,240 --> 03:19:28,240 FOR AUTOMATED REACTIONS AND 4004 03:19:28,240 --> 03:19:28,680 BIOLOGICAL ASSAYS. 4005 03:19:28,680 --> 03:19:32,480 THAT FITS IN WELL WITH OUR ASSAY 4006 03:19:32,480 --> 03:19:33,600 OPTIMIZATION. 4007 03:19:33,600 --> 03:19:36,640 THE SECOND AWARDEE REFERENCED 4008 03:19:36,640 --> 03:19:41,200 THIS IS DR. CHOPRA AND LEDGER 4009 03:19:41,200 --> 03:19:47,760 FOR INTERACTIVE QUERY EXECUTION. 4010 03:19:47,760 --> 03:19:52,240 A BLOCK CHAIN FOR AUTONOMOUS 4011 03:19:52,240 --> 03:19:55,560 AUTOMATION AND FITS IN WELL WITH 4012 03:19:55,560 --> 03:20:01,480 EXISTING NCATS CAPABLEABILITY -- 4013 03:20:01,480 --> 03:20:03,400 CAPABILITIES AND HAVE COMPLETE 4014 03:20:03,400 --> 03:20:04,480 TRACEABLE FOR EVERY STEP AND 4015 03:20:04,480 --> 03:20:04,720 FUNCTION. 4016 03:20:04,720 --> 03:20:08,480 WE HAVE INITIATED A PILOT WE'RE 4017 03:20:08,480 --> 03:20:09,520 INVOLVED IN A PROJECT PILOT TO 4018 03:20:09,520 --> 03:20:14,320 KICK IT OFF AND HAVE THE BLOCK 4019 03:20:14,320 --> 03:20:15,360 CHAIN CONTROL INSTRUMENT AT 4020 03:20:15,360 --> 03:20:17,160 NCATS WITH BIOLOGICAL SCREENING 4021 03:20:17,160 --> 03:20:19,240 WHERE WE'RE FURTHER AHEAD. 4022 03:20:19,240 --> 03:20:23,480 THE THIRD AWARDEE IS 4023 03:20:23,480 --> 03:20:24,920 COLLABORATIVE DRUG DISCOVERY AND 4024 03:20:24,920 --> 03:20:26,320 A VIRTUAL MODEL FOR APPROACHES 4025 03:20:26,320 --> 03:20:30,320 TO NEW CHEMISTRIES AND 4026 03:20:30,320 --> 03:20:32,520 COLLABORATIVE INFORMATICS. 4027 03:20:32,520 --> 03:20:34,320 USING MACHINE LEARNING TO 4028 03:20:34,320 --> 03:20:38,320 DEVELOP NOVEL CHEMISTRIES TO 4029 03:20:38,320 --> 03:20:41,800 PLUG IN WITH OUR CHEMISTRY ROUTE 4030 03:20:41,800 --> 03:20:44,320 PLANNING AND AUTOMATED CHEMICAL 4031 03:20:44,320 --> 03:20:44,600 SYNTHESIS. 4032 03:20:44,600 --> 03:20:50,320 WE HAVE M.I.T., DR. CONNOR 4033 03:20:50,320 --> 03:20:58,320 COOLEY FOR VIRTUAL MODULES TO 4034 03:20:58,320 --> 03:21:02,240 ENABLING NEW TECHNIQUES FOR 4035 03:21:02,240 --> 03:21:04,640 AUTONOMOUS OPERATION FOR 4036 03:21:04,640 --> 03:21:06,040 MULTISTEP CHEMICAL SYNTHESIS AND 4037 03:21:06,040 --> 03:21:06,640 MOLECULES. 4038 03:21:06,640 --> 03:21:09,360 WHAT'S EXCITING ABOUT THIS PIECE 4039 03:21:09,360 --> 03:21:11,480 IS IT CAME WITH TWO COMPONENTS 4040 03:21:11,480 --> 03:21:13,480 THAT HAVE GOTTEN SUBSTANTIAL 4041 03:21:13,480 --> 03:21:16,960 FUNDING THE OPEN REACTION 4042 03:21:16,960 --> 03:21:20,120 DATABASE WHICH IS AN INITIATIVE 4043 03:21:20,120 --> 03:21:22,360 SUPPORT LEARNING AND PREDICTION 4044 03:21:22,360 --> 03:21:23,760 CHEMICAL SYNTHESIS AND 4045 03:21:23,760 --> 03:21:24,640 EXPERIMENTAL DESIGN AND IN USE 4046 03:21:24,640 --> 03:21:27,080 BY THOUSAND OF RESEARCHERS AND 4047 03:21:27,080 --> 03:21:28,040 LINKED WITH PUB CHEM. 4048 03:21:28,040 --> 03:21:33,600 THAT'S ONE AREA THEY CAME WITH 4049 03:21:33,600 --> 03:21:36,480 FUNDING FOR THE SYNTHESIS 4050 03:21:36,480 --> 03:21:37,560 PLANNING MODULE OVER YEARS IN 4051 03:21:37,560 --> 03:21:38,440 INITIATIVE WITH DARPA. 4052 03:21:38,440 --> 03:21:40,040 WE'RE EXCITED BECAUSE THEY'RE 4053 03:21:40,040 --> 03:21:42,080 BRINGING THEIR OWN CAPABILITIES 4054 03:21:42,080 --> 03:21:45,280 AND ESSENTIALLY BUILDING 4055 03:21:45,280 --> 03:21:47,080 DISTRIBUTIVE NETWORK OF 4056 03:21:47,080 --> 03:21:47,680 INFORMATICS FOR THE RESEARCH 4057 03:21:47,680 --> 03:21:54,720 COMMUNITY AT LARGE. 4058 03:21:54,720 --> 03:22:01,880 AND THE UNIVERSITY WITH THREE 4059 03:22:01,880 --> 03:22:06,320 INDEPENDENT COMPONENTS. 4060 03:22:06,320 --> 03:22:07,840 DIGITIZE CHEMICAL STANDARD THEY 4061 03:22:07,840 --> 03:22:10,360 CALL KYDL AND YOU DON'T HAVE THE 4062 03:22:10,360 --> 03:22:12,440 VISUAL OF TAKE THE NOTEBOOK AND 4063 03:22:12,440 --> 03:22:13,960 THE CHEMICAL OR THE LABORATORY 4064 03:22:13,960 --> 03:22:15,760 NOTEBOOK AND THE SCROLL TO 4065 03:22:15,760 --> 03:22:17,440 ESSENTIALLY A FORMATTED COMPUTER 4066 03:22:17,440 --> 03:22:19,160 PROGRAMMING LANGUAGE TO TAKE 4067 03:22:19,160 --> 03:22:21,720 THAT LANGUAGE TO BE EXECUTED ON 4068 03:22:21,720 --> 03:22:24,640 THEIR COMPUTER WHICH IS A 4069 03:22:24,640 --> 03:22:25,400 UNIVERSAL CHEMICAL SYNTHESIS 4070 03:22:25,400 --> 03:22:27,240 DEVICE AND FINALLY HOW TO HAVE 4071 03:22:27,240 --> 03:22:29,560 THE OUTPUT OF THE MOLECULES 4072 03:22:29,560 --> 03:22:33,800 PRODUCED TO CREATE CHEMICAL 4073 03:22:33,800 --> 03:22:34,400 DISCOVERIES THROUGH MACHINE 4074 03:22:34,400 --> 03:22:35,080 LEARNING ALGORITHMS. 4075 03:22:35,080 --> 03:22:36,920 WE'RE EXCITED BECAUSE WE'RE 4076 03:22:36,920 --> 03:22:39,000 STARTING THE PROCESS OF BUILDING 4077 03:22:39,000 --> 03:22:41,400 A COMPUTER THAT WILL BE 4078 03:22:41,400 --> 03:22:42,320 INSTALLED IN THE NCATS 4079 03:22:42,320 --> 03:22:43,440 LABORATORY AND ONE EXPERIENCE WE 4080 03:22:43,440 --> 03:22:46,040 WANT TO RUN IS TO UTILIZE THE 4081 03:22:46,040 --> 03:22:48,640 BLOCK CHAIN BASED APPROACH FROM 4082 03:22:48,640 --> 03:22:51,880 THE LINK PROJECT TO INITIATE A 4083 03:22:51,880 --> 03:22:53,080 CHEMICAL SYNTHESIS TO RUN AT 4084 03:22:53,080 --> 03:22:55,880 NCATS AND GLASGOW AT THE SAME 4085 03:22:55,880 --> 03:22:57,960 TIME AND COMPARE RESULTS AND 4086 03:22:57,960 --> 03:23:00,120 FEED THEM BACK TO OUR 4087 03:23:00,120 --> 03:23:01,160 COMPUTATIONAL PLATFORM. 4088 03:23:01,160 --> 03:23:02,840 THAT'S AT A HIGH LEVEL. 4089 03:23:02,840 --> 03:23:04,480 WE'RE EXCITED ABOUT THAT WORK. 4090 03:23:04,480 --> 03:23:06,360 WHAT'S MORE EXCITING IS THE 4091 03:23:06,360 --> 03:23:08,760 TIMING OF THE PRESENTATION IS 4092 03:23:08,760 --> 03:23:10,120 GOOD BECAUSE MONDAY THE FIVE 4093 03:23:10,120 --> 03:23:13,400 GROUPS ARE SHOWING UP TO NCATS 4094 03:23:13,400 --> 03:23:15,000 IN PERSON AND THEY'VE ALL AGREED 4095 03:23:15,000 --> 03:23:18,880 AND SIGNED A FIVE-WAY RCA SO 4096 03:23:18,880 --> 03:23:20,840 THEY CAN ALL SPEAK FREELY ABOUT 4097 03:23:20,840 --> 03:23:22,360 WAYS TO COLLABORATE TOGETHER. 4098 03:23:22,360 --> 03:23:23,960 THOUGH THEY'RE SPECIFIC PIECES I 4099 03:23:23,960 --> 03:23:26,320 WANT TO MENTION THESE PIECES 4100 03:23:26,320 --> 03:23:28,480 AREN'T FIXED AND RIGID IN PLACE 4101 03:23:28,480 --> 03:23:29,920 TO ACROSS THE SPECTRUM BECAUSE 4102 03:23:29,920 --> 03:23:31,320 THIS IS SUCH A BROAD AREA OF 4103 03:23:31,320 --> 03:23:34,320 RESEARCH WE NEED ALL THE HELP WE 4104 03:23:34,320 --> 03:23:39,400 CAN GET. 4105 03:23:39,400 --> 03:23:41,400 THE CONTINUED GROWTH AND 4106 03:23:41,400 --> 03:23:41,720 CAPABILITY. 4107 03:23:41,720 --> 03:23:43,240 THE CURRENT CAPABILITY ARE 4108 03:23:43,240 --> 03:23:45,320 ADDITIONS TO AUTOMATION AND 4109 03:23:45,320 --> 03:23:47,760 MOLECULES USING AUTOMATED 4110 03:23:47,760 --> 03:23:50,120 PROCESSES, NOVEL ANALYTICAL 4111 03:23:50,120 --> 03:23:52,360 TECHNIQUES ON WHAT WAS MADE AND 4112 03:23:52,360 --> 03:23:53,440 DATA CAPTURE ACROSS PROCESSES 4113 03:23:53,440 --> 03:23:55,280 AND DATA SHARING AT SCALE WHICH 4114 03:23:55,280 --> 03:23:57,280 I THINK NCATS HAS LED IN THE 4115 03:23:57,280 --> 03:23:58,760 SPACE FOR SOME TIME AND 4116 03:23:58,760 --> 03:24:00,320 HIGHLIGHTED THAT THROUGH 4117 03:24:00,320 --> 03:24:03,760 INITIATIVES SUCH AS RDCRN AND 4118 03:24:03,760 --> 03:24:04,080 N3C. 4119 03:24:04,080 --> 03:24:14,560 THIS IS A NEXT STEP UP NOT 4120 03:24:15,760 --> 03:24:16,840 VIRTUAL BUT I THINK THIS GOES 4121 03:24:16,840 --> 03:24:21,880 BACK TO DODA NOW. 4122 03:24:21,880 --> 03:24:24,800 >>WE PROVIDED UPDATES ABOUT THE 4123 03:24:24,800 --> 03:24:26,120 ASPIRE PROGRAM. 4124 03:24:26,120 --> 03:24:29,520 I WANTED TO GIVE YOU SOME IDEA 4125 03:24:29,520 --> 03:24:32,280 WHERE WE THINK ABOUT FUTURE. 4126 03:24:32,280 --> 03:24:33,120 WE'D LIKE TO EXPAND OUR PROGRAM 4127 03:24:33,120 --> 03:24:37,160 TO INCLUDE COLLABORATIONS WITH 4128 03:24:37,160 --> 03:24:39,000 OTHER PROGRAMS SUCH AS 3-D BIO 4129 03:24:39,000 --> 03:24:41,400 PRINTING AND TISSUE CHIPS AND 4130 03:24:41,400 --> 03:24:42,960 WOULD LIKE TO EXPLORE CHEMICAL 4131 03:24:42,960 --> 03:24:45,040 SPACE WITH PRODUCT LIBRARIES AND 4132 03:24:45,040 --> 03:24:47,880 TO EXPLORE HOW WE CAN TARGET 4133 03:24:47,880 --> 03:24:50,400 OTHER BIOLOGICAL TARGETS SUCH AS 4134 03:24:50,400 --> 03:24:52,960 RNA. 4135 03:24:52,960 --> 03:24:58,000 AND ALSO SPACE TO INCLUDE 4136 03:24:58,000 --> 03:24:59,240 SYNTHETIC BIOLOGY AND EXPAND 4137 03:24:59,240 --> 03:25:00,240 CHEMICAL SPACE. 4138 03:25:00,240 --> 03:25:02,800 SO FAR WE HAD A FRUITFUL 4139 03:25:02,800 --> 03:25:05,840 COLLABORATION WITH DARPA AND 4140 03:25:05,840 --> 03:25:07,560 WOULD LIKE TO EXPAND WITH OTHER 4141 03:25:07,560 --> 03:25:09,280 I.C.s AND FEDERAL AGENCIES. 4142 03:25:09,280 --> 03:25:10,920 WHILE THE MAJORITY OF THE PEOPLE 4143 03:25:10,920 --> 03:25:16,400 WE'RE WORKING SO FAR WITH ARE 4144 03:25:16,400 --> 03:25:18,080 INTERESTED IN AUTOMATION WE'D 4145 03:25:18,080 --> 03:25:26,320 LIKE TO ENGAGE THOSE CHEMISTS 4146 03:25:26,320 --> 03:25:32,200 THAT AMENABLE TO AUTOMATION AND 4147 03:25:32,200 --> 03:25:36,600 USE ADDITIONAL FUNDING 4148 03:25:36,600 --> 03:25:39,640 MECHANISMS IN ORDER TO SPUR 4149 03:25:39,640 --> 03:25:40,520 PRIVATE SECTOR RELATIONS. 4150 03:25:40,520 --> 03:25:45,240 I'D LIKE TO TAKE TIME TO THANK 4151 03:25:45,240 --> 03:25:48,120 MANY PEOPLE WHO HAVE HELPED US 4152 03:25:48,120 --> 03:25:51,960 DEVELOP THESE PROGRAMS AND 4153 03:25:51,960 --> 03:25:55,560 EXECUTE THE PROGRAMS. 4154 03:25:55,560 --> 03:26:05,840 [LISTING NAMES] 4155 03:26:14,360 --> 03:26:19,640 SHOW HELPED DURING THE 4156 03:26:19,640 --> 03:26:20,000 INITIATIVES. 4157 03:26:20,000 --> 03:26:21,720 OUR MANAGER AND OUR GRANTS 4158 03:26:21,720 --> 03:26:29,120 MANAGEMENT TEAM AND THE BUDGET 4159 03:26:29,120 --> 03:26:30,320 TEAM AND THESE CONTRIBUTED TO 4160 03:26:30,320 --> 03:26:37,440 THE ASPIRE LABORATORY AND THE 4161 03:26:37,440 --> 03:26:40,680 TEAM FOR THEIR EXPERTISE AND 4162 03:26:40,680 --> 03:26:46,000 DEVELOPING FRUITFUL 4163 03:26:46,000 --> 03:26:54,320 COLLABORATIONS AND THE TEAM FOR 4164 03:26:54,320 --> 03:26:56,040 THE HEAL INITIATIVE AND OTHER 4165 03:26:56,040 --> 03:27:03,600 COLLEAGUES AND I.C.s FOR SPECIAL 4166 03:27:03,600 --> 03:27:05,240 MATTER EXPERTS AND FOR THE DARPA 4167 03:27:05,240 --> 03:27:05,680 TEAM. 4168 03:27:05,680 --> 03:27:08,320 THEY WERE OPEN IN SHARING THEIR 4169 03:27:08,320 --> 03:27:10,360 EXPERIENCES THEY HAVE OBTAINED 4170 03:27:10,360 --> 03:27:14,640 FROM THEIR PROGRAMS SO WE CAN 4171 03:27:14,640 --> 03:27:17,040 SUCCESSFULLY BUILD ASPIRE HERE. 4172 03:27:17,040 --> 03:27:19,400 THANK YOU VERY MUCH AND WE'RE 4173 03:27:19,400 --> 03:27:29,760 HAPPY TO ANSWER ANY QUESTIONS. 4174 03:27:29,760 --> 03:27:32,800 >>ANY QUESTIONS FOR DAN AND/OR 4175 03:27:32,800 --> 03:27:33,840 ASPIRE? 4176 03:27:33,840 --> 03:27:39,760 THAT WAS A PRETTY TECHNICAL 4177 03:27:39,760 --> 03:27:40,080 PRESENTATION. 4178 03:27:40,080 --> 03:27:42,600 IT MAY TAKE A BIT TO ABSORB BUT 4179 03:27:42,600 --> 03:27:43,840 IT'S A LARGE PROGRAM WE'RE 4180 03:27:43,840 --> 03:27:45,160 CONTINUING TO BUILD AND HAVE 4181 03:27:45,160 --> 03:27:46,320 BEEN BUILDING FOR THE LAST FIVE 4182 03:27:46,320 --> 03:27:49,360 YEARS AND WE'RE REALLY EXCITED 4183 03:27:49,360 --> 03:27:51,680 TO SEE THE ACTUAL LABS NOW BEING 4184 03:27:51,680 --> 03:27:54,320 BUILT OUT AND THE AWARDEES BEING 4185 03:27:54,320 --> 03:27:55,360 FUNDED IN PULLING THESE 4186 03:27:55,360 --> 03:27:56,400 TOGETHER. 4187 03:27:56,400 --> 03:28:00,240 I THINK THERE'LL BE MUCH MORE 4188 03:28:00,240 --> 03:28:01,520 TANGIBLE INFORMATION THAT WILL 4189 03:28:01,520 --> 03:28:07,280 BE COMING OUT IN SHORT ORDER. 4190 03:28:07,280 --> 03:28:10,000 >>IS THAT THE FACILITY IN 4191 03:28:10,000 --> 03:28:14,400 ROCKVILLE THE SLIDES WE IS A -- 4192 03:28:14,400 --> 03:28:20,240 >>AT 9800 AND OUR NCATS 4193 03:28:20,240 --> 03:28:22,360 FACILITY. 4194 03:28:22,360 --> 03:28:25,760 SHADY GROVE. 4195 03:28:25,760 --> 03:28:32,480 >>YES. 4196 03:28:32,480 --> 03:28:42,320 ANY OTHER THOUGHTS OR QUESTIONS? 4197 03:28:42,320 --> 03:28:49,480 OKAY. 4198 03:28:49,480 --> 03:28:49,720 MATIAS. 4199 03:28:49,720 --> 03:28:59,280 >>VERY IMPRESSIVE. 4200 03:28:59,280 --> 03:29:02,880 AND THERE'S A SIGNIFICANT EFFORT 4201 03:29:02,880 --> 03:29:06,320 IN PLACE THAT CAN DEVELOP INTO 4202 03:29:06,320 --> 03:29:09,520 PRIVATE SECTOR AS WELL. 4203 03:29:09,520 --> 03:29:13,240 THIS IS A START UP IN BIO TECH 4204 03:29:13,240 --> 03:29:13,680 SPACE. 4205 03:29:13,680 --> 03:29:18,320 HAVE YOU ANY EXPLORATION WITH 4206 03:29:18,320 --> 03:29:19,600 LARGE PHARMA WITH STRATEGIC 4207 03:29:19,600 --> 03:29:20,760 INVESTMENT IN THE SPACE GOING 4208 03:29:20,760 --> 03:29:24,600 FORWARD TO SEE IF SOME ALIGNS IF 4209 03:29:24,600 --> 03:29:28,280 LARGE PHARMA COULD BE IN THE 4210 03:29:28,280 --> 03:29:33,680 CO-DEVELOPMENT OR CONVERSELY 4211 03:29:33,680 --> 03:29:35,280 GENERATING THE LARGE LIBRARIES 4212 03:29:35,280 --> 03:29:38,320 TO FIND A WAY TO HAVE THE 4213 03:29:38,320 --> 03:29:42,320 INVESTMENT COME BACK AND 4214 03:29:42,320 --> 03:29:46,320 UTILIZED WITH BIG PHARMA AS 4215 03:29:46,320 --> 03:29:48,120 WELL. 4216 03:29:48,120 --> 03:29:52,680 >>GREAT QUESTION. 4217 03:29:52,680 --> 03:29:55,360 WE HAVE COLLABORATIVE PROJECTS 4218 03:29:55,360 --> 03:29:59,840 WITH LARGE PHARMA OR A COMPANY I 4219 03:29:59,840 --> 03:30:03,640 MENTIONED FOR THE DEVELOPMENT OF 4220 03:30:03,640 --> 03:30:07,560 WHAT'S CALLED THE REACTOR AN 4221 03:30:07,560 --> 03:30:09,320 EIGHT-CHANNEL CHEMICAL SYNTHESIS 4222 03:30:09,320 --> 03:30:10,320 DEVICE. 4223 03:30:10,320 --> 03:30:13,800 THAT WAS ALSO IN CONCERT WITH 4224 03:30:13,800 --> 03:30:14,720 ELI LILLY. 4225 03:30:14,720 --> 03:30:17,280 WE VIEW SOME AREAS AS 4226 03:30:17,280 --> 03:30:19,880 PRE-COMPETITIVE DEVELOPMENT TO 4227 03:30:19,880 --> 03:30:21,080 AUTOMATE CHEMISTRY TAKE A STEP 4228 03:30:21,080 --> 03:30:23,200 BACK WITH THE FANCY STUFF IN THE 4229 03:30:23,200 --> 03:30:25,680 CLOUD AND AMIL. 4230 03:30:25,680 --> 03:30:28,680 IF WE CAN'T AUTOMATE CHEM 4231 03:30:28,680 --> 03:30:31,760 SYNTHESIS WE'RE NOT GOING 4232 03:30:31,760 --> 03:30:32,240 ANYWHERE. 4233 03:30:32,240 --> 03:30:34,880 IT'S THE SPACE. 4234 03:30:34,880 --> 03:30:41,120 WE WORKED WITH PARTNERS AND DO 4235 03:30:41,120 --> 03:30:43,720 LIKE THE OFFICE OF STRATEGY 4236 03:30:43,720 --> 03:30:45,240 ALLIANCE HELPED PUT THAT IN 4237 03:30:45,240 --> 03:30:47,920 PLACE STRATEGICALLY WHERE WE CAN 4238 03:30:47,920 --> 03:30:51,760 WORK TOGETHER WITH INDUSTRY 4239 03:30:51,760 --> 03:30:58,320 PARTNERS AND ALSO HAVE A CREATE 4240 03:30:58,320 --> 03:31:02,760 UP WITH OTHER. 4241 03:31:02,760 --> 03:31:04,720 AND WE USE MASS SPECT 4242 03:31:04,720 --> 03:31:05,240 TECHNOLOGY. 4243 03:31:05,240 --> 03:31:11,960 OPEN TO WORKING WITH PHARMA AND 4244 03:31:11,960 --> 03:31:12,760 THERE'S A LOT OF COLLABORATION 4245 03:31:12,760 --> 03:31:15,280 THOUGH WE'RE NOT DIRECTLY 4246 03:31:15,280 --> 03:31:16,200 WORKING WITH PHARMA THERE'S 4247 03:31:16,200 --> 03:31:17,720 EXCHANGE OF IDEAS AS A 4248 03:31:17,720 --> 03:31:19,360 RELATIVELY SMALL COMMUNITY. 4249 03:31:19,360 --> 03:31:23,560 WE'RE WORKING FORMAL 4250 03:31:23,560 --> 03:31:27,120 COLLABORATION AND IN NORMAL -- 4251 03:31:27,120 --> 03:31:29,760 INFORMAL KNOWLEDGE SHARING TO 4252 03:31:29,760 --> 03:31:31,760 ENHANCE THE SPACE OF AUTO 4253 03:31:31,760 --> 03:31:34,320 CHEMISTRY. 4254 03:31:34,320 --> 03:31:38,760 >>THANK YOU, SAM. 4255 03:31:38,760 --> 03:31:42,000 >>I KNOW WITH NCATS YOU TAKE A 4256 03:31:42,000 --> 03:31:42,840 DISEASE AGNOSTIC APPROACH BUT IN 4257 03:31:42,840 --> 03:31:45,880 TERMS OF TRYING TO PILOT THIS, 4258 03:31:45,880 --> 03:31:48,000 IS THERE A PARTICULAR DISEASE 4259 03:31:48,000 --> 03:31:51,960 THAT YOU SEE INITIALLY SHOWING 4260 03:31:51,960 --> 03:31:53,960 THE FEASIBILITY WITH? 4261 03:31:53,960 --> 03:31:56,720 AND THEN MY OTHER QUESTION IS I 4262 03:31:56,720 --> 03:32:00,640 GUESS YOU MENTIONED FOR 4263 03:32:00,640 --> 03:32:02,320 SCREENING DO YOU SEE IT BEING 4264 03:32:02,320 --> 03:32:06,320 USED FURTHER DRUG EXTREME IN A 4265 03:32:06,320 --> 03:32:08,400 DRUG DISCOVERY PATHWAY OR HOW 4266 03:32:08,400 --> 03:32:18,280 FAR DOWN ? 4267 03:32:18,280 --> 03:32:22,320 >>WE OPEN IT UP TO ANY DRUG 4268 03:32:22,320 --> 03:32:24,200 TARGET AND WE HAVE INTEREST IN 4269 03:32:24,200 --> 03:32:24,960 RARE DISEASE AND THE TYPE OF 4270 03:32:24,960 --> 03:32:27,160 PROJECT YOU CAN ENVISION WILL BE 4271 03:32:27,160 --> 03:32:28,400 TREMENDOUS HELP TO DISCOVER NEW 4272 03:32:28,400 --> 03:32:37,280 TREATMENTS FOR RARE DISEASES. 4273 03:32:37,280 --> 03:32:39,560 EVENTUALLY IT WILL BE A PLATFORM 4274 03:32:39,560 --> 03:32:42,320 OPEN SOURCED AND ANYONE WITH A 4275 03:32:42,320 --> 03:32:44,000 TRANSLATIONAL PROBLEM WILL SAY I 4276 03:32:44,000 --> 03:32:47,640 HAVE THIS STAR GET WHAT 4277 03:32:47,640 --> 03:32:49,120 MOLECULES DO YOU SUGGEST TO 4278 03:32:49,120 --> 03:32:50,240 TARGET IT? 4279 03:32:50,240 --> 03:32:52,960 THIS IS DOWN THE ROAD WE 4280 03:32:52,960 --> 03:32:54,640 ENVISION IT AS A TREMENDOUS 4281 03:32:54,640 --> 03:32:58,320 RESOURCE FOR THOSE DISEASES THAT 4282 03:32:58,320 --> 03:33:00,600 INDUSTRY MAY NOT BE PRIMARILY 4283 03:33:00,600 --> 03:33:01,040 INTERESTED IN. 4284 03:33:01,040 --> 03:33:03,400 AND WITH REGARD TO THE SECOND 4285 03:33:03,400 --> 03:33:06,520 QUESTION, I THINK SAM MAY BE 4286 03:33:06,520 --> 03:33:08,760 BETTER IN ANSWERING THAT ONE. 4287 03:33:08,760 --> 03:33:11,120 >>AND SO I DO THINK THIS IS 4288 03:33:11,120 --> 03:33:14,320 GOING TO BE -- IT'S A GREAT 4289 03:33:14,320 --> 03:33:16,840 QUESTION BECAUSE FROM A 4290 03:33:16,840 --> 03:33:18,320 SCREENING PERSPECTIVE THAT 4291 03:33:18,320 --> 03:33:21,880 BEGETS IT WILL BE USED FOR PRE 4292 03:33:21,880 --> 03:33:23,040 CLINICAL DRUG DEVELOPMENT. 4293 03:33:23,040 --> 03:33:26,280 BUT IF WE THINK OF SYNTHESIS AND 4294 03:33:26,280 --> 03:33:29,600 SCALE UP OF ACTUAL PRODUCT, WILL 4295 03:33:29,600 --> 03:33:31,520 THAT HAVE FURTHER USE DOWN 4296 03:33:31,520 --> 03:33:31,920 STREAM? 4297 03:33:31,920 --> 03:33:34,120 WE HAVEN'T REALLY TALKED ABOUT 4298 03:33:34,120 --> 03:33:37,240 THE LEVEL OF COULD THIS BE USED 4299 03:33:37,240 --> 03:33:44,000 TO CREATE GMP GRADE 4300 03:33:44,000 --> 03:33:44,360 PHARMACEUTICALS. 4301 03:33:44,360 --> 03:33:47,800 IT'S NOT REALLY OUR FOCUS AT 4302 03:33:47,800 --> 03:33:48,640 NCATS TO SAY IT COULDN'T IF 4303 03:33:48,640 --> 03:33:51,240 THERE THERE'S A NEED BUT IT DOES 4304 03:33:51,240 --> 03:33:54,280 RESIDE IN THE PRE-CLINICAL AREA 4305 03:33:54,280 --> 03:33:56,240 ESPECIALLY BECAUSE IT'S HOUSED 4306 03:33:56,240 --> 03:33:57,000 WITHIN THE INTRAMURAL PROGRAM 4307 03:33:57,000 --> 03:33:59,360 AND THAT'S THE FOCUS OF DPI AND 4308 03:33:59,360 --> 03:34:03,720 WHEN THIS FIRST GOT KICKED OFF 4309 03:34:03,720 --> 03:34:05,120 WITH THIS COULDN'T HAVE HAPPENED 4310 03:34:05,120 --> 03:34:06,640 WITHOUT OUR SCIENTIFIC DIRECTOR. 4311 03:34:06,640 --> 03:34:08,400 THE INTENDED PURPOSE IS 4312 03:34:08,400 --> 03:34:10,320 PRECLINICAL BUT THE TECHNOLOGIES 4313 03:34:10,320 --> 03:34:12,760 AND TECHNIQUES INVOLVED COULD BE 4314 03:34:12,760 --> 03:34:13,560 APPLIED TOWARDS DOWNSTREAM MORE 4315 03:34:13,560 --> 03:34:23,920 CLINICAL APPROACHES. 4316 03:34:27,560 --> 03:34:28,280 >>THANKS. 4317 03:34:28,280 --> 03:34:34,040 AND TO THE FIRST PART OF YOUR 4318 03:34:34,040 --> 03:34:35,920 QUESTION, WHAT HELPED KICK OFF 4319 03:34:35,920 --> 03:34:38,320 THE PROGRAM IS WORK WITH THE 4320 03:34:38,320 --> 03:34:42,320 HEAL PROGRAM HELPING END 4321 03:34:42,320 --> 03:34:42,720 ADDICTION LONG-TERM. 4322 03:34:42,720 --> 03:34:45,800 WE STARTED WITH THAT FOCUS AND 4323 03:34:45,800 --> 03:34:47,320 AS DOBA MENTIONED WE'RE 4324 03:34:47,320 --> 03:34:53,160 INTERESTED IN WHAT WE DO NEXT A 4325 03:34:53,160 --> 03:34:54,600 LITTLE BIT MORE THAT'S BEEN AN 4326 03:34:54,600 --> 03:34:56,040 AREA OF INTEREST BECAUSE WE'VE 4327 03:34:56,040 --> 03:34:57,760 WORKED CLOSELY WITH THE GROUP 4328 03:34:57,760 --> 03:34:59,720 AND IT'S AN UNMET NEED AS WELL. 4329 03:34:59,720 --> 03:35:01,240 >>I FORGOT THAT'S WHERE IT 4330 03:35:01,240 --> 03:35:01,760 STARTED. 4331 03:35:01,760 --> 03:35:02,320 THAT ANSWERS THE QUESTION. 4332 03:35:02,320 --> 03:35:08,280 THANKS. 4333 03:35:08,280 --> 03:35:08,560 >>OKAY. 4334 03:35:08,560 --> 03:35:16,880 ANY OTHER QUESTIONS? 4335 03:35:16,880 --> 03:35:22,040 >>ANNA, I THIS CONCLUDES THE 4336 03:35:22,040 --> 03:35:24,880 PRESENTATIONS FOR THE DAY. 4337 03:35:24,880 --> 03:35:27,880 IT'S BEEN A SHORT MEETING BUT A 4338 03:35:27,880 --> 03:35:29,760 LONG DAY AND A LOT OF 4339 03:35:29,760 --> 03:35:30,400 PRESENTATIONS, A LOT OF DATA 4340 03:35:30,400 --> 03:35:36,640 THROWN AT YOU BUT I HOPE YOU 4341 03:35:36,640 --> 03:35:37,520 SENSE THE EXCITEMENT OF WHERE 4342 03:35:37,520 --> 03:35:40,280 WE'RE GOING AND WILL STAY TUNED 4343 03:35:40,280 --> 03:35:41,040 TO UNDERSTAND HOW WE'RE GOING TO 4344 03:35:41,040 --> 03:35:46,640 BE PUSHING FORWARD ON THE 4345 03:35:46,640 --> 03:35:47,760 STRATEGIC PLANNING PROCESSES AND 4346 03:35:47,760 --> 03:35:49,120 WE'LL BE REACHING OUT IT A 4347 03:35:49,120 --> 03:35:51,320 VARIETY OF FOLKS AND YOU'LL BE 4348 03:35:51,320 --> 03:35:53,080 AMONGST THEM SO STAY TUNED ON 4349 03:35:53,080 --> 03:35:53,360 THAT. 4350 03:35:53,360 --> 03:35:55,560 AND WITH THAT UNLESS THERE'S 4351 03:35:55,560 --> 03:35:56,840 ANYTHING ELSE YOU WANT TO BRING 4352 03:35:56,840 --> 03:36:02,240 UP I'LL GIVE IT ONE LAST 4353 03:36:02,240 --> 03:36:04,440 OPENING -- TIME -- OKAY. 4354 03:36:04,440 --> 03:36:08,280 I'M GOING GAVEL US OUT THEN AND 4355 03:36:08,280 --> 03:36:09,320 DO THIS AWKWARD THING ABOUT 4356 03:36:09,320 --> 03:36:11,080 MOVING THE VIDEO. 4357 03:36:11,080 --> 03:36:11,560 THANK YOU SO MUCH. 4358 03:36:11,560 --> 03:36:14,360 THIS CONCLUDES OUR MEETING. 4359 03:36:14,360 --> 03:36:24,640 >>THANKS, EVERYONE.