1 00:00:06,158 --> 00:00:09,928 >> GOOD MORNING. 2 00:00:09,928 --> 00:00:11,630 THAT WAS A LITTLE LETHARGIC. 3 00:00:11,630 --> 00:00:13,031 CAN WE TRY AGAIN? 4 00:00:13,031 --> 00:00:13,765 GOOD MORNING. 5 00:00:13,765 --> 00:00:14,766 YES. 6 00:00:14,766 --> 00:00:15,901 YOU ALL CAME BACK. 7 00:00:15,901 --> 00:00:16,601 THAT'S WONDERFUL. 8 00:00:16,601 --> 00:00:18,337 DID YOU HAVE A GOOD EVENING? 9 00:00:18,337 --> 00:00:21,306 WAS THE RECEPTION A LOT OF FUN? 10 00:00:21,306 --> 00:00:24,443 DID PEOPLE ENJOY THAT? 11 00:00:24,443 --> 00:00:24,710 OKAY. 12 00:00:24,710 --> 00:00:26,845 AND HOPEFULLY YOU'RE ENJOYING 13 00:00:26,845 --> 00:00:27,979 THE BEAUTIFUL WEATHER WE ORDERED 14 00:00:27,979 --> 00:00:29,448 FOR YOU JUST FOR THE D.C. AREA. 15 00:00:29,448 --> 00:00:33,251 WE'RE PLEASED TO WELCOME YOU TO 16 00:00:33,251 --> 00:00:34,820 DAY TWO. 17 00:00:34,820 --> 00:00:37,956 THIS IS THE INCLUDE PROJECT AND 18 00:00:37,956 --> 00:00:39,658 TRANSFORMATIONAL RESEARCH. 19 00:00:39,658 --> 00:00:41,927 I WANT TO REMIND EVERYBODY IT'S 20 00:00:41,927 --> 00:00:44,896 GOING TO BE A RELATIVELY BRIEFER 21 00:00:44,896 --> 00:00:46,698 SESSION BUT STAY TUNED FOR 22 00:00:46,698 --> 00:00:54,005 SOMETHING REALLY FUN COMING UP. 23 00:00:54,005 --> 00:00:57,209 WE'LL HAVE DR. EAGAN AND 24 00:00:57,209 --> 00:00:57,909 CLINICAL TRIALS READINESS. 25 00:00:57,909 --> 00:00:59,745 THERE'LL BE BREAKOUTS AT LUNCH 26 00:00:59,745 --> 00:01:02,013 WHICH ARE OPTIONAL AND INFORMAL 27 00:01:02,013 --> 00:01:05,117 SO IF YOU'RE PART OF A CLINICAL 28 00:01:05,117 --> 00:01:07,085 TRIAL TEAM OR INTERESTED IN 29 00:01:07,085 --> 00:01:08,787 COHORT DEVELOPMENT WE'LL HAVE 30 00:01:08,787 --> 00:01:10,555 SPECIFIED ROOMS TO GATHER FOR 31 00:01:10,555 --> 00:01:12,958 LUNCH, OTHERWISE YOU CAN PICK UP 32 00:01:12,958 --> 00:01:14,659 BOX LUNCHES AND EAT WHERE YOU'D 33 00:01:14,659 --> 00:01:14,960 LIKE. 34 00:01:14,960 --> 00:01:16,828 IF YOU'D LIKE TO GO OUTSIDE, 35 00:01:16,828 --> 00:01:21,366 THAT'S ALSO AN OPTION. 36 00:01:21,366 --> 00:01:23,201 COME BACK AFTER LUNCH, PLEASE, 37 00:01:23,201 --> 00:01:25,771 AND WE'LL HAVE A SESSION ON DATA 38 00:01:25,771 --> 00:01:27,906 SHARING AND ACCESS AND 39 00:01:27,906 --> 00:01:28,740 INTERNATIONAL DATA ISSUES WHICH 40 00:01:28,740 --> 00:01:31,743 HAVE COME UP IN SOME DISCUSSIONS 41 00:01:31,743 --> 00:01:33,245 IN THE LAST DAY AND A HALF OR 42 00:01:33,245 --> 00:01:33,612 SO. 43 00:01:33,612 --> 00:01:36,381 WE'LL HAVE COMMUNITY OUTREACH 44 00:01:36,381 --> 00:01:38,150 EFFORTS AND WRAP UP WITH SOME 45 00:01:38,150 --> 00:01:40,118 FUTURE DIRECTIONS FOR 46 00:01:40,118 --> 00:01:42,120 INCLUDE-RELATED RESEARCH AND 47 00:01:42,120 --> 00:01:44,122 CLOSING REMARKS FROM DR. SCHWETZ 48 00:01:44,122 --> 00:01:45,290 FROM THE OFFICE OF THE DIRECTOR 49 00:01:45,290 --> 00:01:45,824 AT NIH. 50 00:01:45,824 --> 00:01:48,827 I THINK WE HAVE AN EXCITING AND 51 00:01:48,827 --> 00:01:50,829 PACKED BUT PLEASANT AGENDA AND 52 00:01:50,829 --> 00:01:52,931 WE'RE LOOKING FORWARD TO ALL OF 53 00:01:52,931 --> 00:01:54,199 WHAT YOU'LL SHARE WITH US TODAY. 54 00:01:54,199 --> 00:01:56,334 WE ENJOYED YESTERDAY'S SESSIONS 55 00:01:56,334 --> 00:01:58,069 AND APPRECIATE ALL THE SPEAKERS 56 00:01:58,069 --> 00:01:59,771 AND PARTICIPANTS FOR ALL OF YOUR 57 00:01:59,771 --> 00:02:02,307 COMMITMENT AND ENGAGEMENT. 58 00:02:02,307 --> 00:02:04,743 I WANT TO THANK AGAIN OUR 59 00:02:04,743 --> 00:02:06,878 INCLUDE AMBASSADORS WHO WELCOMED 60 00:02:06,878 --> 00:02:08,980 US AGAIN TODAY. 61 00:02:08,980 --> 00:02:14,119 THANK YOU TO PIA, GABBY AND 62 00:02:14,119 --> 00:02:16,755 THERESA OR EXCELLENT WELCOMING. 63 00:02:16,755 --> 00:02:26,998 HERE THEY ARE. 64 00:02:33,238 --> 00:02:39,044 I WANT TO ACKNOWLEDGE OUR 65 00:02:39,044 --> 00:02:42,814 SELF-ADVOCATES. 66 00:02:42,814 --> 00:02:44,816 AND MR. DAVID EAGAN WHO IS SPEAK 67 00:02:44,816 --> 00:02:46,117 IN A MOMENT. 68 00:02:46,117 --> 00:02:48,386 LET ME TELL YOU ABOUT DAVID. 69 00:02:48,386 --> 00:02:50,522 HE'S INE ADVOCATE AND VOLUNTEER 70 00:02:50,522 --> 00:02:53,825 LEAD WHOER PROMOTES THE CAUSES 71 00:02:53,825 --> 00:02:55,660 OF PEOPLE WITH INTELLECTUAL 72 00:02:55,660 --> 00:02:56,495 DISABILITIES INCLUDING DOWN 73 00:02:56,495 --> 00:02:58,897 SYNDROME AND HAS HAD 20 YEARS OF 74 00:02:58,897 --> 00:02:59,898 COMPETITIVE EMPLOYMENT AND 75 00:02:59,898 --> 00:03:03,869 CAREER IN ADVOCACY AT THE LOCAL, 76 00:03:03,869 --> 00:03:05,203 STATE, AND NATIONAL AND 77 00:03:05,203 --> 00:03:06,438 INTERNATIONAL LEVELS AND THE 78 00:03:06,438 --> 00:03:07,572 FIRST PERSON OF DISABILITY TO BE 79 00:03:07,572 --> 00:03:10,742 A JOSEPH P. KENNEDY JR. PUBLIC 80 00:03:10,742 --> 00:03:13,278 POLICY FELLOW AND WORKED ON 81 00:03:13,278 --> 00:03:13,812 CAPITOL HILL. 82 00:03:13,812 --> 00:03:17,716 HE'S ALSO A SPECIAL OLYMPICS 83 00:03:17,716 --> 00:03:21,219 ATHLETE AND SERGEANT SHRIVER 84 00:03:21,219 --> 00:03:27,926 GLOBAL MESSENGER AND HAS 85 00:03:27,926 --> 00:03:30,328 ADDRESSED OUR COUNCIL AND HAS 86 00:03:30,328 --> 00:03:31,029 DEALT WITH ISSUES WITH DOWN 87 00:03:31,029 --> 00:03:34,032 SYNDROME SINCE HE WAS A BABY. 88 00:03:34,032 --> 00:03:36,635 WE'RE PLEASED TO HAVE HIM AND 89 00:03:36,635 --> 00:03:39,437 THE PUBLISHER OF A BOOK. 90 00:03:39,437 --> 00:03:42,541 JOIN ME IN WELCOMING MR. DAVID 91 00:03:42,541 --> 00:03:46,545 EAGAN TO GIVE US A CALL TO 92 00:03:46,545 --> 00:03:47,546 ACTION. 93 00:03:47,546 --> 00:03:52,751 -- MR. DAVID EGAN FOR THE CALL 94 00:03:52,751 --> 00:04:02,928 TO ACTION. 95 00:04:11,636 --> 00:04:15,240 >> HOW'S EVERYONE DOING TODAY? 96 00:04:15,240 --> 00:04:16,408 HOW'S YOUR MORNING? 97 00:04:16,408 --> 00:04:24,649 THANK YOU, DR. PARISI. 98 00:04:24,649 --> 00:04:26,685 I'M HERE TO THANK ALL WHO CARE 99 00:04:26,685 --> 00:04:27,919 ABOUT DOWN SYNDROME. 100 00:04:27,919 --> 00:04:31,489 THANK YOU, NIH FOR THE INCREASED 101 00:04:31,489 --> 00:04:32,757 FUNDING TO BETTER UNDERSTAND THE 102 00:04:32,757 --> 00:04:38,730 CONDITION AND IMPROVE OUR LIVES. 103 00:04:38,730 --> 00:04:42,701 WHEN I WAS YOUNG, I NEEDED TO GO 104 00:04:42,701 --> 00:04:45,103 TO THE HOSPITAL TO HAVE MY 105 00:04:45,103 --> 00:04:46,705 TONSILS TAKEN OUT. 106 00:04:46,705 --> 00:04:48,974 I ASKED MY FATHER IF THEY WERE 107 00:04:48,974 --> 00:04:51,109 TAKING AWAY THE DOWN SYNDROME 108 00:04:51,109 --> 00:04:51,276 TOO. 109 00:04:51,276 --> 00:04:55,380 SHE SAID IT WILL BE WITH YOU ALL 110 00:04:55,380 --> 00:04:59,084 YOUR LIFE BUT IT DOESN'T STOP 111 00:04:59,084 --> 00:05:01,920 YOU FROM HAVING DREAMS AND BEING 112 00:05:01,920 --> 00:05:02,220 SUCCESSFUL. 113 00:05:02,220 --> 00:05:07,325 SHE WAS RIGHT. 114 00:05:07,325 --> 00:05:09,461 IT DOESN'T STOP A HEALTHY 115 00:05:09,461 --> 00:05:11,296 JOURNEY AND REWARDING LIFE. 116 00:05:11,296 --> 00:05:14,699 AS YOU WELL KNOW, IN THE '70s 117 00:05:14,699 --> 00:05:17,435 WHEN I WAS BORN, PERCEPTION AND 118 00:05:17,435 --> 00:05:24,075 REALITIES WERE NOT SO POSITIVE. 119 00:05:24,075 --> 00:05:26,077 WILL HAVES WITH DOWN SYNDROME 120 00:05:26,077 --> 00:05:27,779 WERE NOT SEEN AS CAPABLE OF 121 00:05:27,779 --> 00:05:28,780 LEARNING AND HAVING A LIFE LIKE 122 00:05:28,780 --> 00:05:31,082 EVERYONE ELSE. 123 00:05:31,082 --> 00:05:34,753 THAT WAS A MYTH. 124 00:05:34,753 --> 00:05:35,787 WE WERE NOT EXPECTED TO LIVE 125 00:05:35,787 --> 00:05:37,489 BEYOND THE AGE OF 25. 126 00:05:37,489 --> 00:05:44,696 THAT WAS A SAD TRUTH. 127 00:05:44,696 --> 00:05:46,164 THANKS TO RESEARCH AND ADVANCES 128 00:05:46,164 --> 00:05:49,000 IN THE MEDICAL FIELD, WE'RE 129 00:05:49,000 --> 00:05:49,801 LIVING LONGER. 130 00:05:49,801 --> 00:05:52,237 HOWEVER, IT IS NOT ENOUGH TO 131 00:05:52,237 --> 00:05:53,104 LIVE LONG. 132 00:05:53,104 --> 00:05:58,243 WE NEED TO PROSPER. 133 00:05:58,243 --> 00:06:01,212 AND A QUALITY OF LIFE IS 134 00:06:01,212 --> 00:06:02,914 IMPORTANT. 135 00:06:02,914 --> 00:06:06,618 I AM 36 YEARS OLD AND LOOKING 136 00:06:06,618 --> 00:06:12,857 BACK AT 1977 WHEN I WAS BORN. 137 00:06:12,857 --> 00:06:15,326 IT WAS ALMOST IMPOSSIBLE TO 138 00:06:15,326 --> 00:06:19,097 BELIEVE SOMEONE LIKE ME WOULD BE 139 00:06:19,097 --> 00:06:22,300 FULLY INCLUDED AND SPECIAL 140 00:06:22,300 --> 00:06:26,404 OLYMPICS ATHLETES, COMPETITIVELY 141 00:06:26,404 --> 00:06:28,540 EMPLOYED, A JOSEPH P. KENNEDY 142 00:06:28,540 --> 00:06:29,207 PUBLIC POLICY FELLOW AND AUTHOR 143 00:06:29,207 --> 00:06:32,510 AND ADVOCATE. 144 00:06:32,510 --> 00:06:35,647 I'M ONE OF MANY PEOPLE OF MY 145 00:06:35,647 --> 00:06:38,383 GENERATION WHO ARE PROOF THAT 146 00:06:38,383 --> 00:06:44,055 EXPECTATIONS FOR US HAVE CHANGED 147 00:06:44,055 --> 00:06:45,757 DEEPLY. 148 00:06:45,757 --> 00:06:46,791 WHAT SEEMED IMPOSSIBLE ON THE 149 00:06:46,791 --> 00:06:49,227 DAY I WAS BORN IS NOW A 150 00:06:49,227 --> 00:06:54,566 POSSIBILITY. 151 00:06:54,566 --> 00:06:55,834 WHILE WE HAVE MADE SOME 152 00:06:55,834 --> 00:06:57,235 PROGRESS, THERE'S MORE WORK TO 153 00:06:57,235 --> 00:07:07,345 BE DONE. 154 00:07:07,345 --> 00:07:10,181 CLINICAL TRIALS HAVE HELPED THE 155 00:07:10,181 --> 00:07:10,849 DAILY HEALTH CARE OF INDIVIDUALS 156 00:07:10,849 --> 00:07:13,752 WITH DOWN SYNDROME. 157 00:07:13,752 --> 00:07:17,021 WE NEED DOCTORS IN EVERY STATE 158 00:07:17,021 --> 00:07:20,325 IN THE UNITED STATES AND ALL 159 00:07:20,325 --> 00:07:21,726 OVER THE WORLD THAT SPECIALIZE 160 00:07:21,726 --> 00:07:22,560 IN CARING WITH INDIVIDUALS LIKE 161 00:07:22,560 --> 00:07:26,831 ME. 162 00:07:26,831 --> 00:07:28,266 I STRONGLY BELIEVE DOWN SYNDROME 163 00:07:28,266 --> 00:07:30,702 DOES NOT DEFINE ME AS A PERSON. 164 00:07:30,702 --> 00:07:33,304 WHILE I SHARE IN THE CONDITION 165 00:07:33,304 --> 00:07:36,207 WITH AN EXTRA CHROMOSOME, DOWN 166 00:07:36,207 --> 00:07:37,475 SYNDROME IS NOT WHO I AM, IT'S 167 00:07:37,475 --> 00:07:42,213 PART OF WHO I AM. 168 00:07:42,213 --> 00:07:48,753 I HAVE ASPIRATIONS, DREAMS, 169 00:07:48,753 --> 00:07:50,121 FEELINGS, CHALLENGES AND 170 00:07:50,121 --> 00:07:52,724 SUCCESSES LIKE EVERYONE ELSE. 171 00:07:52,724 --> 00:07:54,893 I ALSO SHARE IN THE SAME 172 00:07:54,893 --> 00:07:57,228 HUMANITY LIKE ANYONE ELSE WITH 173 00:07:57,228 --> 00:07:58,696 OR WITHOUT A DISABILITY. 174 00:07:58,696 --> 00:08:04,803 AS I SAY IN MY BOOK, WE'RE MORE 175 00:08:04,803 --> 00:08:07,238 ALIKE THAN DIFFERENT. 176 00:08:07,238 --> 00:08:09,207 WE CONTRIBUTE IN OUR COMMUNITY 177 00:08:09,207 --> 00:08:10,942 AND THANKS TO OUR EXTRA 178 00:08:10,942 --> 00:08:14,946 CHROMOSOME WE MAY HAVE THE 179 00:08:14,946 --> 00:08:16,915 INCLUDE FOR RESEARCHERS AND 180 00:08:16,915 --> 00:08:19,317 DISCOVER CURES THAT WOULD HELP 181 00:08:19,317 --> 00:08:24,155 ALL OF US THOSE WITH, WITHOUT 182 00:08:24,155 --> 00:08:28,827 MANY DISEASES LIKE SLEEP APNEA, 183 00:08:28,827 --> 00:08:31,696 ALZHEIMER'S AND MUCH MORE. 184 00:08:31,696 --> 00:08:33,998 I WANT YOU TO KNOW I AM NO 185 00:08:33,998 --> 00:08:41,339 STRANGER TO RESEARCH. 186 00:08:41,339 --> 00:08:45,210 EARLY IN MY CHILDHOOD WE WENT 187 00:08:45,210 --> 00:08:55,453 TO THE UNIVERSITY OF WISCONSIN. 188 00:08:55,453 --> 00:08:58,723 PREVIOUS EDITIONS OF SOME BOOKS 189 00:08:58,723 --> 00:09:04,929 DIDN'T HAVE PICTURES OF DOWN 190 00:09:04,929 --> 00:09:09,200 SYNDROME AND STUDENTS WOULD 191 00:09:09,200 --> 00:09:14,505 LISTEN TO MY HEART AND EVALUATED 192 00:09:14,505 --> 00:09:17,475 MY FINE GROSS MOTOR SKILLS EVERY 193 00:09:17,475 --> 00:09:17,742 MONTH. 194 00:09:17,742 --> 00:09:21,212 LATER WE VOLUNTEERED FOR 195 00:09:21,212 --> 00:09:26,417 RESEARCH AT THE REISMAN FUNDED 196 00:09:26,417 --> 00:09:29,120 BY THE NATIONAL INSTITUTES OF 197 00:09:29,120 --> 00:09:29,354 HEALTH. 198 00:09:29,354 --> 00:09:30,555 AND FOR THE PAST YEARS MY 199 00:09:30,555 --> 00:09:33,324 BROTHER, MARK, AND I VOLUNTEERED 200 00:09:33,324 --> 00:09:40,832 FOR THE NIH INCLUDE ABCDS STUDY 201 00:09:40,832 --> 00:09:42,901 IN PITTSBURGH FOR ALZHEIMER'S. 202 00:09:42,901 --> 00:09:44,802 I TOMORROW SERVED ON A 203 00:09:44,802 --> 00:09:48,606 CONSORTIUM AND DS CONNECTED AND 204 00:09:48,606 --> 00:09:50,108 PROMOTE RESEARCH, EDUCATION, 205 00:09:50,108 --> 00:09:56,981 ADVOCACY FOR HEALTH. 206 00:09:56,981 --> 00:10:00,418 YOU PARTICIPATE THROUGH MY 207 00:10:00,418 --> 00:10:01,119 CAMPAIGN. 208 00:10:01,119 --> 00:10:03,554 WE CAN BE INVOLVED IN THE BASIC 209 00:10:03,554 --> 00:10:04,756 RESEARCH AND CLINICAL TRIALS SO 210 00:10:04,756 --> 00:10:06,557 SCIENCE CAN MAKE ADVANCES AND 211 00:10:06,557 --> 00:10:07,292 TRANSLATE TO OUR DAILY HEALTHY 212 00:10:07,292 --> 00:10:15,199 LIVING. 213 00:10:15,199 --> 00:10:16,834 I SHARE THOSE THOUGHTS AT THE 214 00:10:16,834 --> 00:10:23,508 UNITED NATIONS IN NEW YORK CITY. 215 00:10:23,508 --> 00:10:26,311 THIS PAST MARCH 21 FOR HEALTH 216 00:10:26,311 --> 00:10:27,278 EQUALITY FOR ALL. 217 00:10:27,278 --> 00:10:28,179 WE NEED HEALTH CARE SYSTEM TO 218 00:10:28,179 --> 00:10:31,716 TAKE US SERIOUSLY. 219 00:10:31,716 --> 00:10:34,852 WE NEED CLINICS THAT SPECIALIZE 220 00:10:34,852 --> 00:10:38,256 IN DOWN SYNDROME IN EVERY STATE. 221 00:10:38,256 --> 00:10:43,661 WE URGENTLY REQUEST THAT 222 00:10:43,661 --> 00:10:44,595 GOVERNMENT AND INSURANCE 223 00:10:44,595 --> 00:10:47,899 COMPANIES ESTABLISH SPECIALTY 224 00:10:47,899 --> 00:10:49,200 CLINICS WITHOUT RECIPROCITY OF 225 00:10:49,200 --> 00:10:53,738 CARE ACROSS STATES. 226 00:10:53,738 --> 00:10:55,907 WE NEED TO CHANGE THE WORLD 227 00:10:55,907 --> 00:10:58,910 TOGETHER WE CAN MAKE IT HAPPEN 228 00:10:58,910 --> 00:11:01,713 BY ADVOCATING FOR ALL OF US. 229 00:11:01,713 --> 00:11:04,215 WE CAN BUILD A SOCIETY THAT DOES 230 00:11:04,215 --> 00:11:06,985 NOT INCLUDE BUT RATHER INCLUDE. 231 00:11:06,985 --> 00:11:12,223 THIS IS A CALL TO ACTION. 232 00:11:12,223 --> 00:11:15,493 IN CLOSING, I WILL LEAVE YOU 233 00:11:15,493 --> 00:11:23,735 WITH ONE THOUGHT, ARE YOU READY? 234 00:11:23,735 --> 00:11:25,837 USUALLY BEING UP HERE THIS HIGH 235 00:11:25,837 --> 00:11:29,440 I CAN'T HEAR EVERYBODY. 236 00:11:29,440 --> 00:11:33,244 BEING THIL IS A GOAL FOR EVERY 237 00:11:33,244 --> 00:11:34,212 PERSON ON THIS EARTH INCLUDING 238 00:11:34,212 --> 00:11:37,015 INDIVIDUALS WITH DOWN SYNDROME. 239 00:11:37,015 --> 00:11:39,584 NOW, LET'S IMAGINE THE 240 00:11:39,584 --> 00:11:40,685 POSSIBILITIES AND A WORLD WHERE 241 00:11:40,685 --> 00:11:45,189 PEOPLE WITH DISABILITIES ARE 242 00:11:45,189 --> 00:11:47,825 INCLUDED IN RESEARCH CLINICAL 243 00:11:47,825 --> 00:11:51,529 TRIALS AND ACCESS AND SAVE THE 244 00:11:51,529 --> 00:11:53,131 BEST HEALTH CARE, SERVICE LIKE 245 00:11:53,131 --> 00:11:55,366 EVERYONE ELSE. 246 00:11:55,366 --> 00:11:57,068 THANK YOU FOR BEING HERE AND A 247 00:11:57,068 --> 00:11:59,604 WISH YOU A GREAT DAY AND 248 00:11:59,604 --> 00:12:01,739 INTERESTING EXCHANGES THAT WILL 249 00:12:01,739 --> 00:12:04,008 LEAD TO IMPROVING THE LIVES OF 250 00:12:04,008 --> 00:12:07,645 US ALL. 251 00:12:07,645 --> 00:12:17,922 THANK YOU, NIH. 252 00:12:25,029 --> 00:12:27,031 THANK YOU, DR. PARISI AND ALL OF 253 00:12:27,031 --> 00:12:29,901 YOU HERE AND ALL THE TEAMS AND 254 00:12:29,901 --> 00:12:33,271 RESEARCHERS FOCUSSING ON DOWN 255 00:12:33,271 --> 00:12:36,007 SYNDROME. 256 00:12:36,007 --> 00:12:38,342 I'M HOPEFUL WE'LL MAKE PROGRESS 257 00:12:38,342 --> 00:12:40,011 ENSURING GOOD HEALTH AND CARE OF 258 00:12:40,011 --> 00:12:41,179 ALL REGARDLESS OF BIRTH 259 00:12:41,179 --> 00:12:45,216 CONDITION CAN, DISABILITY, RACE, 260 00:12:45,216 --> 00:12:47,819 SOCIO ECONOMIC STATUS. 261 00:12:47,819 --> 00:12:49,220 THANK YOU. 262 00:12:49,220 --> 00:12:59,464 THANK YOU ALL. 263 00:13:11,509 --> 00:13:13,010 >> THANK YOU SO MUCH, DAVID. 264 00:13:13,010 --> 00:13:14,979 WE APPRECIATE YOUR WORDS AND 265 00:13:14,979 --> 00:13:15,346 CALL TO ACTION. 266 00:13:15,346 --> 00:13:17,548 AND NOW, I HAVE A CALL TO ACTION 267 00:13:17,548 --> 00:13:19,250 FOR EVERYONE HERE. 268 00:13:19,250 --> 00:13:21,219 SO, WE HAVE A WONDERFUL 269 00:13:21,219 --> 00:13:22,920 PHOTOGRAPHER WORKING WITH US 270 00:13:22,920 --> 00:13:24,789 TODAY AND SHE'S AVAILABLE TO 271 00:13:24,789 --> 00:13:26,791 TAKE A GROUP PHOTO BUT THERE'S 272 00:13:26,791 --> 00:13:28,960 SO MUCH OF US WE CAN'T TAKE A 273 00:13:28,960 --> 00:13:30,661 PHOTO WITH EVERYBODY IN THE 274 00:13:30,661 --> 00:13:32,630 BUILDING SO WE'RE GOING TO TAKE 275 00:13:32,630 --> 00:13:34,165 A LITTLE FIELD TRIP, THREE TO 276 00:13:34,165 --> 00:13:34,932 FIVE MINUTES TO THE NATIONAL 277 00:13:34,932 --> 00:13:37,068 LIBRARY OF MEDICINE BUILDING, 278 00:13:37,068 --> 00:13:39,604 THE WORLD'S LARGEST MEDICAL 279 00:13:39,604 --> 00:13:40,304 LIBRARY IN THE WORLD. 280 00:13:40,304 --> 00:13:41,606 THAT'S THE HIGHLIGHT OF YOUR 281 00:13:41,606 --> 00:13:43,374 TRIP HERE AT NIH AND WE'LL TAKE 282 00:13:43,374 --> 00:13:45,843 A PHOTOGRAPH OVER THERE ON THE 283 00:13:45,843 --> 00:13:49,981 STEPS AT THE NLM. 284 00:13:49,981 --> 00:13:51,382 LOOK FOR FOLKS LIKE -- HERE WE 285 00:13:51,382 --> 00:13:52,683 GO. 286 00:13:52,683 --> 00:13:55,353 LOOK FOR THOSE OF US WITH THE 287 00:13:55,353 --> 00:13:56,387 NIH TEAM MEMBERS AND WE'LL FRY 288 00:13:56,387 --> 00:13:58,322 TO MAKE SURE YOU GET TO THE 289 00:13:58,322 --> 00:13:59,624 RIGHT PLACE AND TAKE A QUICK 290 00:13:59,624 --> 00:14:00,791 PHOTO AND COME BACK FOR THE REST 291 00:14:00,791 --> 00:14:02,226 OF OUR SESSIONS. 292 00:14:02,226 --> 00:14:04,195 SO WE'D REALLY APPRECIATE IT IF 293 00:14:04,195 --> 00:14:08,166 EVERYBODY WHO WANTS TO 294 00:14:08,166 --> 00:14:08,466 PARTICIPATE. 295 00:14:08,466 --> 00:14:10,301 WE HAVE A GREAT GROUP HERE TODAY 296 00:14:10,301 --> 00:14:11,702 AND LOOK FORWARD TO SEEING YOU 297 00:14:11,702 --> 00:14:13,271 YOU WILL AND YOUR SMILING FACES. THANK YOU. 298 00:14:13,271 --> 00:14:23,447 299 00:14:15,819 --> 00:14:16,720 >> I'M LOVING THE BOX. 300 00:14:16,720 --> 00:14:21,525 YOU CAN SEE ME OVER THE PODIUM. 301 00:14:21,525 --> 00:14:23,827 WE'RE GOING TO SKIP THE BREAK 302 00:14:23,827 --> 00:14:25,396 AND DO THE SESSION AND THEN 303 00:14:25,396 --> 00:14:26,964 SESSION 8 AND THEN HAVE LUNCH. 304 00:14:26,964 --> 00:14:28,666 I THINK WE SHOULD HAVE PLENTY OF 305 00:14:28,666 --> 00:14:30,534 TIME TO GET TO THE IMPORTANT 306 00:14:30,534 --> 00:14:31,535 THINGS. 307 00:14:31,535 --> 00:14:33,404 WELCOME BACK FROM THE WONDERFUL 308 00:14:33,404 --> 00:14:34,371 PHOTOS WE TOOK. 309 00:14:34,371 --> 00:14:36,240 THAT'S GOING TO BE A GREAT 310 00:14:36,240 --> 00:14:37,207 REMEMBRANCE FROM THE MEETING. 311 00:14:37,207 --> 00:14:41,045 I'D LIKE TO INTRODUCE -- FIRST 312 00:14:41,045 --> 00:14:43,614 MYSELF, LAURIE RYAN FROM THE 313 00:14:43,614 --> 00:14:44,748 NATIONAL INSTITUTE ON AGING PART 314 00:14:44,748 --> 00:14:45,916 OF THE NIH INCLUDE TEAM AND ONE 315 00:14:45,916 --> 00:14:47,551 OF THE LEAD FOR COMPONENTS THREE 316 00:14:47,551 --> 00:14:57,394 THE CLINICAL TRIALS COMPONENT. 317 00:14:57,394 --> 00:15:03,500 OUR FIRST SPEAKER WILL BE 318 00:15:03,500 --> 00:15:05,803 DANIEL COMBS TALKING ABOUT 319 00:15:05,803 --> 00:15:06,537 OBSTRUCTIVE SLEEP AP KNEEIAN 320 00:15:06,537 --> 00:15:10,207 CHILDREN WITH DOWN SYNDROME. 321 00:15:10,207 --> 00:15:13,010 -- APNEA. 322 00:15:13,010 --> 00:15:17,314 >> THE BOX IS LESS HELPFUL FOR 323 00:15:17,314 --> 00:15:17,481 ME. 324 00:15:17,481 --> 00:15:20,851 I'D LIKE TO THANK NIH FOR HAVING 325 00:15:20,851 --> 00:15:21,018 ME. 326 00:15:21,018 --> 00:15:24,822 I'M GOING TO TALK ABOUT 327 00:15:24,822 --> 00:15:27,024 MEDICATIONS FOR SLEEP APNEA AND 328 00:15:27,024 --> 00:15:30,027 WE HAVE AN R61, R33 I'LL FOCUS 329 00:15:30,027 --> 00:15:32,396 ON THE R61 BECAUSE WE FINISHED 330 00:15:32,396 --> 00:15:33,697 THAT PART. 331 00:15:33,697 --> 00:15:35,766 OBSTRUCTIVE SLEEP APNEA IN DOWN 332 00:15:35,766 --> 00:15:37,101 SYNDROME I THINK EVERYONE IS 333 00:15:37,101 --> 00:15:40,804 FAMILIAR WITH AND COMMON, 50% TO 334 00:15:40,804 --> 00:15:43,340 80% PROMINENCE PUSHING 90% TO 335 00:15:43,340 --> 00:15:45,542 100%. 336 00:15:45,542 --> 00:15:47,678 WE KNOW IT'S STRONGLY ASSOCIATED 337 00:15:47,678 --> 00:15:50,748 WITH IMPAIRMENT AND QUALITY OF 338 00:15:50,748 --> 00:15:52,916 LIFE. 339 00:15:52,916 --> 00:15:53,584 CPAP WORKS FANTASTIC IF YOU CAN 340 00:15:53,584 --> 00:15:57,454 WEAR IT BUT MOST CAN'T AND 341 00:15:57,454 --> 00:15:58,722 TONSILLECTOMY GENERALLY MAKES IT 342 00:15:58,722 --> 00:16:01,458 BETTER BUT NOT MAKE IT GO AWAY 343 00:16:01,458 --> 00:16:03,427 FOR MOST CHILDREN. 344 00:16:03,427 --> 00:16:07,531 LOW MUSCLE TONE IS AN IMPORTANT 345 00:16:07,531 --> 00:16:09,299 RISK FACTOR AND A NERVE 346 00:16:09,299 --> 00:16:10,668 STIMULATOR WHICH WAS APPROVED BY 347 00:16:10,668 --> 00:16:15,539 THE FDA LAST YEAR NOW AND THAT 348 00:16:15,539 --> 00:16:19,243 TARGETS MUSCLE HYPOTONIA. 349 00:16:19,243 --> 00:16:21,311 AND THERE'S AN EXISTING FDA 350 00:16:21,311 --> 00:16:23,914 APPROVED MED APPROVED DOWN TO 351 00:16:23,914 --> 00:16:28,986 AGE 6 FOR ADHD SPECIFICALLY. 352 00:16:28,986 --> 00:16:31,455 IT TARGETS NOREPINEPHRINE 353 00:16:31,455 --> 00:16:36,960 ASSOCIATED WITH MUSCLE TONE AND 354 00:16:36,960 --> 00:16:43,967 SLEEP AND OXYBUTYNIN TARGETS AND 355 00:16:43,967 --> 00:16:48,939 SHOWN TO IMPROVE MUSCLE TONE AND 356 00:16:48,939 --> 00:16:54,478 SINCE THEN THERE'S BEEN PROBABLY 357 00:16:54,478 --> 00:17:04,988 FIVE OR SIX OUR STUDY HAD AN 358 00:17:11,462 --> 00:17:15,566 EXCLUSION IF YOU'RE USING CPAP 359 00:17:15,566 --> 00:17:20,904 YOU SHOULD NOT STOP AND THERE'S 360 00:17:20,904 --> 00:17:24,041 A CONSERVATIVE LOOK AND 361 00:17:24,041 --> 00:17:28,011 UNTREATED HYPER THYROIDISM 362 00:17:28,011 --> 00:17:31,582 BECAUSE IT CAN INCREASE SLEEP 363 00:17:31,582 --> 00:17:33,584 APNEA AND CURRENT UNTREATED 364 00:17:33,584 --> 00:17:33,884 DEPRESSION. 365 00:17:33,884 --> 00:17:35,352 IF YOU HAVE BIG TONSILS YOU 366 00:17:35,352 --> 00:17:43,961 SHOULD GET THOSE OUT FIRST. 367 00:17:43,961 --> 00:17:46,497 AND IF YOU HAVE CENTRAL SLEEP 368 00:17:46,497 --> 00:17:48,098 APNEA OR RELATED SLEEP APNEA 369 00:17:48,098 --> 00:17:49,633 THEN YOU'RE EXCLUDED. 370 00:17:49,633 --> 00:17:52,336 WE DID A CROSSOVER DESIGN AND 371 00:17:52,336 --> 00:17:53,871 LOOKED AT HIGH DOSE WHY WAS THE 372 00:17:53,871 --> 00:17:58,075 DOSE USED IN THE ADULT STUDIES 373 00:17:58,075 --> 00:18:08,619 80 MILLIGRAMS ATOMOXETINE AND WE 374 00:18:18,862 --> 00:18:20,497 LOOK AT OUTCOMES. 375 00:18:20,497 --> 00:18:25,335 THE IN LAB SLEEP STUDY WITH OUR 376 00:18:25,335 --> 00:18:26,336 OUTCOME MEASURE AND WEREN'T 377 00:18:26,336 --> 00:18:28,038 POWERED TO SEE ANYTHING IN THAT 378 00:18:28,038 --> 00:18:29,206 AND QUALITY OF LIFE ASSESSMENT 379 00:18:29,206 --> 00:18:32,576 THE OSA18 OBSTRUCTIVE SLEEP 380 00:18:32,576 --> 00:18:36,280 APNEA SPECIFIC IN KIDS AND ONE 381 00:18:36,280 --> 00:18:37,581 MORE GENERAL THESE ARE BOTH USED 382 00:18:37,581 --> 00:18:39,583 COMMONLY IN KIDS WITH DOWN 383 00:18:39,583 --> 00:18:43,086 SYNDROME. 384 00:18:43,086 --> 00:18:44,388 ENROLLMENT WE APPROACHED ABOUT 385 00:18:44,388 --> 00:18:48,659 50, HALF AGREED TO BE IN THE 386 00:18:48,659 --> 00:18:49,793 STUDY. 387 00:18:49,793 --> 00:18:51,361 OF THOSE FOUR DIDN'T HAVE SEVERE 388 00:18:51,361 --> 00:18:52,796 ENOUGH SLEEP APNEA OR AT ALL SO 389 00:18:52,796 --> 00:18:53,664 WERE EXCLUDED. 390 00:18:53,664 --> 00:19:02,372 ONE BETWEEN CONSENTING USED CPAP 391 00:19:02,372 --> 00:19:03,340 AND ONE COULDN'T TOLERATE THE 392 00:19:03,340 --> 00:19:05,142 SLEEP STUDY SO WE HAD 15. 393 00:19:05,142 --> 00:19:11,114 THREE WITHDREW, ONE HAD 394 00:19:11,114 --> 00:19:13,450 MEDICATION AND ONE CITED STUDY 395 00:19:13,450 --> 00:19:16,520 DEMANDS TOO HIGH AND THERE WAS 396 00:19:16,520 --> 00:19:18,088 AN EVENT DUE TO RESPIRATORY 397 00:19:18,088 --> 00:19:19,122 FAILURE AND THIS WAS 398 00:19:19,122 --> 00:19:19,957 UNFORTUNATELY DURING COVID AND 399 00:19:19,957 --> 00:19:21,758 NOT RELATED TO THE STUDY. 400 00:19:21,758 --> 00:19:22,926 ONE PERSON DIDN'T HAVE ENOUGH 401 00:19:22,926 --> 00:19:26,063 DATA ON THE LAST SLEEP STUDY SO 402 00:19:26,063 --> 00:19:26,663 I'LL TALK ABOUT THE COMPLETE 403 00:19:26,663 --> 00:19:29,166 DATA. 404 00:19:29,166 --> 00:19:30,901 SO LOOKING AT THE DEMOGRAPHICS, 405 00:19:30,901 --> 00:19:33,403 SO AGE RIGHT IN THE MIDDLE OF 406 00:19:33,403 --> 00:19:36,440 OUR SAMPLE SIZE OF OUR TARGETS. 407 00:19:36,440 --> 00:19:37,941 MORE BOYS THAN GIRLS WHICH I 408 00:19:37,941 --> 00:19:40,410 THINK IS RANDOM. 409 00:19:40,410 --> 00:19:42,246 OUR POPULATION IS VERY 410 00:19:42,246 --> 00:19:45,682 REPRESENTATIVE OF TUCSON SO HALF 411 00:19:45,682 --> 00:19:49,519 LATINO ABOUT 20% AFRICAN 412 00:19:49,519 --> 00:19:53,357 AMERICAN AND HALF CAUCASIAN AND 413 00:19:53,357 --> 00:19:55,759 THIS IS 20 TO 70 AND SO 40 IS 414 00:19:55,759 --> 00:19:58,328 VERY MUCH IN THE MIDDLE. 415 00:19:58,328 --> 00:20:01,164 IT'S FAIRLY REPRESENTATIVE. 416 00:20:01,164 --> 00:20:02,065 BMI A LITTLE BIT ON THE HIGH 417 00:20:02,065 --> 00:20:04,601 SIDE AND THREE OR FOUR WITH 418 00:20:04,601 --> 00:20:05,002 OBESITY. 419 00:20:05,002 --> 00:20:06,436 MOST HAD HEART DISEASE WHICH 420 00:20:06,436 --> 00:20:07,004 MAKES SENSE. 421 00:20:07,004 --> 00:20:10,274 ONE HAD A HISTORY OF DEPRESSION 422 00:20:10,274 --> 00:20:16,680 AND TWO HAD AUTISM. 423 00:20:16,680 --> 00:20:18,548 AND WE HAD ONE PARTICIPANT 424 00:20:18,548 --> 00:20:22,920 WITHDREW DUE TO SIDE EFFECTS DUE 425 00:20:22,920 --> 00:20:24,354 TO IRRITABILITY. 426 00:20:24,354 --> 00:20:26,223 THAT'S WHAT WAS MORE COMMON ON 427 00:20:26,223 --> 00:20:27,658 THE HIGHER DOSE THAN LOW DOSE 428 00:20:27,658 --> 00:20:30,327 WHICH MAKES SENSE. 429 00:20:30,327 --> 00:20:34,031 WE HAD ONE CHILD ON HIGH DOSE IT 430 00:20:34,031 --> 00:20:36,600 SEEMED LIKE THAT WAS DOSE 431 00:20:36,600 --> 00:20:38,335 DEPENDENT AND THE OF THE SIDE 432 00:20:38,335 --> 00:20:40,737 EFFECTS WERE LIMITED. 433 00:20:40,737 --> 00:20:42,873 LOOKING AT OUTCOMES AND 434 00:20:42,873 --> 00:20:44,875 PARTICIPANT LEVEL CHANGES AND 435 00:20:44,875 --> 00:20:45,042 A.I. 436 00:20:45,042 --> 00:20:47,144 CHILDREN GENERALLY GET BETTER 437 00:20:47,144 --> 00:20:49,446 AND HIGH DOSE AND LOW DOSE SEEM 438 00:20:49,446 --> 00:20:50,147 ROUGHLY THE SAME. 439 00:20:50,147 --> 00:20:52,416 AND THEN LOOKING -- THIS IS IN 440 00:20:52,416 --> 00:20:54,651 MORE DETAIL. 441 00:20:54,651 --> 00:20:57,220 OBSTRUCTIVE H.I. THE PRIMARY 442 00:20:57,220 --> 00:20:59,656 OUTCOME MEASURE FROM 7.4 AVERAGE 443 00:20:59,656 --> 00:21:02,526 TO 3.6 AND 3.9. 444 00:21:02,526 --> 00:21:04,428 THIS WAS SIGNIFICANT. 445 00:21:04,428 --> 00:21:06,330 THIS WAS TRUE IN REM AND 446 00:21:06,330 --> 00:21:06,663 NON-REM. 447 00:21:06,663 --> 00:21:08,932 ONE OF THE ONLY OTHER THINGS 448 00:21:08,932 --> 00:21:12,336 I'LL POINT YOUR ATTENTION TO SO 449 00:21:12,336 --> 00:21:14,304 SLEEP APNEA IS GENERALLY WORSE 450 00:21:14,304 --> 00:21:15,872 ON YOUR BACK AND SAW IT GET 451 00:21:15,872 --> 00:21:17,441 BETTER AND YOU CAN USE 452 00:21:17,441 --> 00:21:19,109 TRADITIONAL THERAPY WHERE YOU 453 00:21:19,109 --> 00:21:22,946 TRAIN THEM NOT TO SLEEP ON THEIR 454 00:21:22,946 --> 00:21:23,947 BACKS. 455 00:21:23,947 --> 00:21:27,851 THAT'S AN INTERESTING POTENTIAL 456 00:21:27,851 --> 00:21:28,819 FUTURE STUDY. 457 00:21:28,819 --> 00:21:36,193 THE AT OWE -- ATOMOXETINE CAN 458 00:21:36,193 --> 00:21:38,595 REDUCE THESE CHANGES BUT WITH A 459 00:21:38,595 --> 00:21:40,330 SMALL SAMPLE WE WERE EXPECTING 460 00:21:40,330 --> 00:21:40,630 BIG CHANGE. 461 00:21:40,630 --> 00:21:42,032 QUALITY OF LIFE OUTCOMES. 462 00:21:42,032 --> 00:21:45,268 LOOKING AT THE OSA18 THIS GOT 463 00:21:45,268 --> 00:21:50,073 BETTER BUT DIDN'T REACH 464 00:21:50,073 --> 00:21:53,010 SIGNIFICANT AND AGAIN IT DIDN'T 465 00:21:53,010 --> 00:21:58,782 REACH SIGNIFICANCE AND ADHD GOT 466 00:21:58,782 --> 00:22:00,117 A BIT BETTER ESPECIALLY ON THE 467 00:22:00,117 --> 00:22:00,417 HIGHER DOSE. 468 00:22:00,417 --> 00:22:02,486 THAT WAS INTERESTING. 469 00:22:02,486 --> 00:22:04,221 WHETHER THAT'S DUE TO SLEEP 470 00:22:04,221 --> 00:22:07,257 APNEA OR TREATING ADHD DIRECTLY 471 00:22:07,257 --> 00:22:12,195 I CAN'T TELL YOU FOR SURE. 472 00:22:12,195 --> 00:22:13,764 I'M PRESENTING THIS AT THE SLEEP 473 00:22:13,764 --> 00:22:18,902 MEETING IN JUNE, SO WE PULLED 474 00:22:18,902 --> 00:22:21,438 OUT RESPONDERS AND PEOPLE WITH 475 00:22:21,438 --> 00:22:25,242 OBSTRUCTIVE H.I. THAT GOT BELOW 476 00:22:25,242 --> 00:22:28,111 FIVE AND 43% OF OUR SAMPLE WERE 477 00:22:28,111 --> 00:22:30,380 RESPONDERS. 478 00:22:30,380 --> 00:22:33,417 IN THIS GROUP IMPROVED QUITE A 479 00:22:33,417 --> 00:22:34,217 BIT. 480 00:22:34,217 --> 00:22:35,352 IT WAS 14 POINTS HIGHER COMPARED 481 00:22:35,352 --> 00:22:38,355 TO THE NON-RESPONDERS. 482 00:22:38,355 --> 00:22:40,323 THE MINIMUM DIFFERENCE IS ABOUT 483 00:22:40,323 --> 00:22:40,891 4. 484 00:22:40,891 --> 00:22:43,026 THIS IS A SIGNIFICANT JUMP. 485 00:22:43,026 --> 00:22:45,729 THAT'S PROMISING. 486 00:22:45,729 --> 00:22:50,400 SUMMARIZING LOW DOSE AND HIGH 487 00:22:50,400 --> 00:22:51,568 DOSE WORKED ABOUT THE SAME. 488 00:22:51,568 --> 00:22:55,405 WE SAW SIMILAR EFFECTS IN THE 489 00:22:55,405 --> 00:23:04,081 LOW DOSE AND AT -- ATOMOXETINE 490 00:23:04,081 --> 00:23:05,248 IMPROVED OVER TIME AND SAW A 491 00:23:05,248 --> 00:23:06,216 CHANGE IN THE TREATMENT 492 00:23:06,216 --> 00:23:06,516 RESPONDERS. 493 00:23:06,516 --> 00:23:11,188 WHERE WE ARE NOW SO THIS IS OUR 494 00:23:11,188 --> 00:23:11,488 61R33. 495 00:23:11,488 --> 00:23:15,292 IT'S A LOW DOSE FOR SIX MONTHS 496 00:23:15,292 --> 00:23:21,398 AND THIS IS A MORE ROBUST 497 00:23:21,398 --> 00:23:29,406 COGNITIVE ASSESSMENT THE STUDY'S 498 00:23:29,406 --> 00:23:33,677 ONGOING AND PRETTY 499 00:23:33,677 --> 00:23:35,912 STRAIGHTFORWARD WE'VE HAD THREE 500 00:23:35,912 --> 00:23:37,380 PARENTS SAYING THEY HAVE DONE 501 00:23:37,380 --> 00:23:38,381 BETTER IN SCHOOL LIKE LEARNING 502 00:23:38,381 --> 00:23:41,485 HOW TO READ WHICH IS EXCITING TO 503 00:23:41,485 --> 00:23:44,654 WE WERE HOPING THE FATIGUE AND 504 00:23:44,654 --> 00:23:46,156 MOOD SIDE EFFECTS GET BETTER 505 00:23:46,156 --> 00:23:49,159 WITH ONGOING THERAPY. 506 00:23:49,159 --> 00:23:51,027 THANK YOU TO OUR RESEARCH 507 00:23:51,027 --> 00:23:52,462 PARTICIPANTS AND OUR DATA SAFETY 508 00:23:52,462 --> 00:23:55,298 MONITORING BOARD AND MY RESEARCH 509 00:23:55,298 --> 00:23:57,434 TEAM AND THEN I'LL LEAVE THIS 510 00:23:57,434 --> 00:23:59,102 WITH SOME PARTICIPANTS AND THIS 511 00:23:59,102 --> 00:23:59,903 IS EXCITING FOR ME AND I'LL STOP 512 00:23:59,903 --> 00:24:01,404 THERE. 513 00:24:01,404 --> 00:24:11,581 THANK YOU. 514 00:24:13,550 --> 00:24:16,453 OUR NEXT SPEAKER TALKING ABOUT 515 00:24:16,453 --> 00:24:17,420 CLINICAL TRIAL TO TREAT ADHD IN 516 00:24:17,420 --> 00:24:20,857 DOWN SYNDROME. 517 00:24:20,857 --> 00:24:28,298 >> I AM SO NOT TECH SAVVY BUT 518 00:24:28,298 --> 00:24:30,700 I'M HUMBLED TO BE HERE AND IT'S 519 00:24:30,700 --> 00:24:35,071 GREAT TO BE HERE AT THE NIH AS 520 00:24:35,071 --> 00:24:36,373 FUTURE AND CURRENT 521 00:24:36,373 --> 00:24:37,374 INVESTIGATORS. 522 00:24:37,374 --> 00:24:39,242 I'LL DO MY BEST TO GET THROUGH 523 00:24:39,242 --> 00:24:41,511 THIS AND I'LL WANT TO POINT AT 524 00:24:41,511 --> 00:24:43,180 THINGS SO IF SOMEBODY CAN SHOW 525 00:24:43,180 --> 00:24:46,483 ME HOW TO DO THIS. 526 00:24:46,483 --> 00:24:56,026 DISCLOSURES, NIH FUNDING, AND 527 00:24:56,026 --> 00:24:56,293 THANK YOU. 528 00:24:56,293 --> 00:25:00,797 SO THE TRIAL I'M PRESENTING ON 529 00:25:00,797 --> 00:25:04,367 IS LOOKING AT A STIMULANT 530 00:25:04,367 --> 00:25:05,402 MEDICATION IN CHILDREN WITH DOWN 531 00:25:05,402 --> 00:25:10,907 SYNDROME AND ADHD. 532 00:25:10,907 --> 00:25:13,343 THE GENERAL POPULATION IS 7% TO 533 00:25:13,343 --> 00:25:17,881 8% AND PEOPLE WITH DISABILITY IS 534 00:25:17,881 --> 00:25:19,449 HIGHER AND LOOKING AT REPORTS IS 535 00:25:19,449 --> 00:25:26,990 DOUBLE OR TRIPLE AND LOOKING AT 536 00:25:26,990 --> 00:25:29,259 CLINICAL ASSESSMENTS IT'S A 537 00:25:29,259 --> 00:25:32,262 THREE TO FIVE TIMES HIGHER FOLD 538 00:25:32,262 --> 00:25:34,397 AND NOT DIAGNOSING AND WE HAVE 539 00:25:34,397 --> 00:25:36,967 STIMULANT WORK SO WHY ARE WE 540 00:25:36,967 --> 00:25:38,568 DOING A TRIAL IN THIS MEDICATION 541 00:25:38,568 --> 00:25:40,804 WE KNOW IT WORKS. 542 00:25:40,804 --> 00:25:44,307 IN THE GENERAL POPULATION KIDS 543 00:25:44,307 --> 00:25:47,611 WITH ADHD ARE TREATED WITH 544 00:25:47,611 --> 00:25:48,878 STIMULANT WE HAVE LARGE EFFECT 545 00:25:48,878 --> 00:25:50,080 SIZE AND KNOW IT WORKS AND MOST 546 00:25:50,080 --> 00:25:52,249 RESPOND TO MEDICATION. 547 00:25:52,249 --> 00:25:56,019 WE HAVE OVER 12 CLINICAL TRIALS 548 00:25:56,019 --> 00:25:57,420 WITH CHILDREN WITH INTELLECTUAL 549 00:25:57,420 --> 00:26:01,124 DISABILITY AND ADHD TO AND WE 550 00:26:01,124 --> 00:26:02,559 HAVE BENEFICIAL RESPONDERS AND 551 00:26:02,559 --> 00:26:04,861 HAVE GUIDELINES THAT SAY IF YOU 552 00:26:04,861 --> 00:26:06,429 HAVE AN INTELLECTUAL DISABILITY 553 00:26:06,429 --> 00:26:08,965 AND ADHD WE RECOMMEND USING 554 00:26:08,965 --> 00:26:09,866 STIMULANTS AND BEHAVIORAL 555 00:26:09,866 --> 00:26:12,802 INTERVENTIONS BUT THE MAJORITY 556 00:26:12,802 --> 00:26:14,504 OF THE TRIALS HAVE INCLUDED AND 557 00:26:14,504 --> 00:26:16,940 WHY WE HAVE INCLUDE FUNDING 558 00:26:16,940 --> 00:26:17,807 BECAUSE OUR KIDS WITH DOWN 559 00:26:17,807 --> 00:26:20,977 SYNDROME WERE COMMONLY EXCLUDED 560 00:26:20,977 --> 00:26:24,514 AND THERE MAY HAVE BEEN TWO AND 561 00:26:24,514 --> 00:26:25,882 IN THE TRIAL AND DIDN'T STATE 562 00:26:25,882 --> 00:26:26,449 SPECIFICS. 563 00:26:26,449 --> 00:26:29,019 WE KNOW IT WORKS SO WHY ARE WE 564 00:26:29,019 --> 00:26:30,453 DOING THE TRIAL? 565 00:26:30,453 --> 00:26:33,290 WE'RE DOING IT BECAUSE IN THE 566 00:26:33,290 --> 00:26:35,425 GENERAL POPULATION WHEN WE 567 00:26:35,425 --> 00:26:36,126 PRESCRIBE IN THE GENERAL 568 00:26:36,126 --> 00:26:36,893 POPULATION THEY'RE NOT GETTING 569 00:26:36,893 --> 00:26:38,261 THE MEDICATION. 570 00:26:38,261 --> 00:26:44,134 IF WE LOOK AT THIS IS ME TRYING 571 00:26:44,134 --> 00:26:48,638 TO VISUALIZE THE RATE AT GENERAL 572 00:26:48,638 --> 00:26:51,074 POPULATION AND 6% ARE GETTING 573 00:26:51,074 --> 00:26:52,375 STIMULANTS THAT'S A GOOD TARGET 574 00:26:52,375 --> 00:26:54,344 IF NOT THEY'RE PROBABLY GET 575 00:26:54,344 --> 00:26:55,612 ANOTHER INTERVENTION AND LOOKING 576 00:26:55,612 --> 00:26:57,180 AT INTELLECTUAL DISABILITY WHERE 577 00:26:57,180 --> 00:27:02,152 THE RATES OF ADHD IS ABOUT 16% 578 00:27:02,152 --> 00:27:05,422 AGAIN 14% ARE GETTING MEDICATION 579 00:27:05,422 --> 00:27:06,423 AND WE KNOW THE MEDICATION 580 00:27:06,423 --> 00:27:07,123 WORKS. 581 00:27:07,123 --> 00:27:09,259 IF YOU HAVE DOWN SYNDROME AND 582 00:27:09,259 --> 00:27:11,094 ADHD WHERE I SAID THE RATE WAS 583 00:27:11,094 --> 00:27:15,265 ABOUT 20% TO 44% OF KIDS HAVING 584 00:27:15,265 --> 00:27:16,599 THE CO-OCCURRING CONDITIONS 585 00:27:16,599 --> 00:27:17,934 WE'RE DOING TERRIBLE. 586 00:27:17,934 --> 00:27:21,371 4% ARE GETTING STIMULANT OR 587 00:27:21,371 --> 00:27:25,408 ANOTHER STUDY SHOWS 6% TO 9%. 588 00:27:25,408 --> 00:27:26,509 WE'RE DRAMATICALLY UNDER 589 00:27:26,509 --> 00:27:28,712 TREATING OUR KIDS WITH DOWN 590 00:27:28,712 --> 00:27:31,147 SYNDROME AND ADHD. 591 00:27:31,147 --> 00:27:31,448 WHY? 592 00:27:31,448 --> 00:27:33,016 THERE'S CONCERNS CAN WHERE 593 00:27:33,016 --> 00:27:35,985 PEDIATRICIAN RELUCTANT TO 594 00:27:35,985 --> 00:27:36,252 PRESCRIBE. 595 00:27:36,252 --> 00:27:41,658 WE KNOW OUR KIDS WITH CAN DOWN 596 00:27:41,658 --> 00:27:43,827 SYNDROME KIDS HAVE CONCERNS FOR 597 00:27:43,827 --> 00:27:46,096 CARDIAC DEATH AND WE WANT TO 598 00:27:46,096 --> 00:27:48,665 HAVE MORE SAFETY IN PRESCRIBING 599 00:27:48,665 --> 00:27:49,666 STIMULANT MEDICATIONS WITH KIDS 600 00:27:49,666 --> 00:27:52,502 WITH HEART DEFECT WHO'S MAY HAVE 601 00:27:52,502 --> 00:27:54,204 DOWN SYNDROME. 602 00:27:54,204 --> 00:27:55,939 THE AMERICAN HEART ASSOCIATION 603 00:27:55,939 --> 00:28:00,877 SUGGESTS IT'S REASONABLE TO 604 00:28:00,877 --> 00:28:02,011 CONSIDER STIMULANTS AND MAYBE DO 605 00:28:02,011 --> 00:28:04,881 AN EKG BUT THE STIMULANTS CAN BE 606 00:28:04,881 --> 00:28:06,282 STILL SAFELY PRESCRIBE. 607 00:28:06,282 --> 00:28:07,684 WE KNOW WHERE HE CAN DO THIS 608 00:28:07,684 --> 00:28:09,219 SAFELY IN KIDS WITH DOWN 609 00:28:09,219 --> 00:28:11,988 SYNDROME BUT THERE'S AN EXTRA 610 00:28:11,988 --> 00:28:13,990 CONCERN WITH CONGENITAL HEART 611 00:28:13,990 --> 00:28:14,224 DEFECTS. 612 00:28:14,224 --> 00:28:16,126 WE WANTED TO BE ABLE TO SHOW HOW 613 00:28:16,126 --> 00:28:18,094 TO SAFELY MONITOR IT AND WHAT 614 00:28:18,094 --> 00:28:19,162 KIND OF SAFETY MONITORING WE 615 00:28:19,162 --> 00:28:24,834 SHOULD BE DOING IN KIDS WITH 616 00:28:24,834 --> 00:28:28,772 DOWN SYNDROME AND ADHD. 617 00:28:28,772 --> 00:28:31,741 AND WE'VE HAD LEARNINGS FROM THE 618 00:28:31,741 --> 00:28:32,008 MECHANISM. 619 00:28:32,008 --> 00:28:34,177 THE FIRST AIM WAS TO FIGURE OUT 620 00:28:34,177 --> 00:28:35,879 WHAT MEASURES DIFFERENTIATE KIDS 621 00:28:35,879 --> 00:28:37,280 WITH DOWN SYNDROME WITH AND 622 00:28:37,280 --> 00:28:39,682 WITHOUT ADHD AND THEN ALSO TO 623 00:28:39,682 --> 00:28:41,418 FIGURE OUT WHICH ONES MAY BE 624 00:28:41,418 --> 00:28:42,952 MORE POWERED FOR A LARGE 625 00:28:42,952 --> 00:28:43,820 CLINICAL TRIAL AND THE MEASURES 626 00:28:43,820 --> 00:28:45,688 MAY BE DIFFERENT FROM THE ONES 627 00:28:45,688 --> 00:28:47,657 TRACKING CHANGE WITH. 628 00:28:47,657 --> 00:28:51,661 SO WE PHENOTYPED 134 KIDS WITH 629 00:28:51,661 --> 00:28:53,496 DOWN SYNDROME BETWEEN AGES 6 AND 630 00:28:53,496 --> 00:28:56,232 17 AND GAVE A CLINICAL OFFER 631 00:28:56,232 --> 00:28:58,902 VIEW AND RESTRICTIVE ON WHO 632 00:28:58,902 --> 00:29:00,603 WE'RE CLASSIFYING ON HAVING 633 00:29:00,603 --> 00:29:01,404 ADHD. 634 00:29:01,404 --> 00:29:02,739 THERE'S THE DESCRIPTORS AND 635 00:29:02,739 --> 00:29:04,307 WE'RE IDENTIFYING A THIRD OF THE 636 00:29:04,307 --> 00:29:05,408 KIDS WERE MEETING CRITERIA FOR 637 00:29:05,408 --> 00:29:06,176 ADHD. 638 00:29:06,176 --> 00:29:10,146 WHEN WE WERE LOOKING AT THE 639 00:29:10,146 --> 00:29:11,614 MEASURES THAT WOULD 640 00:29:11,614 --> 00:29:12,816 DIFFERENTIATE KIDS WITH AND 641 00:29:12,816 --> 00:29:14,717 WITHOUT DOWN SYNDROME AND ADHD, 642 00:29:14,717 --> 00:29:18,955 WE WERE FINDING THAT THERE WAS 643 00:29:18,955 --> 00:29:20,657 THE SCREENING WAS USED TO 644 00:29:20,657 --> 00:29:21,691 DIFFERENTIATE AND IT'S 645 00:29:21,691 --> 00:29:23,359 NO-BRAINER THEY WERE HIGHER ON 646 00:29:23,359 --> 00:29:25,094 THESE ONES BUT INTERESTING TO 647 00:29:25,094 --> 00:29:26,763 FIND THE TREND THAT TEACHERS 648 00:29:26,763 --> 00:29:28,198 RECORDING ALL KIDS AS HIGH IN 649 00:29:28,198 --> 00:29:28,631 ATTENTION. 650 00:29:28,631 --> 00:29:30,600 WHEN WE LOOK AT DIAGNOSTICALLY, 651 00:29:30,600 --> 00:29:31,935 YOU HAVE TO KNOW HOW TO 652 00:29:31,935 --> 00:29:33,203 INTERPRET THE FORMS BUT THEN WE 653 00:29:33,203 --> 00:29:35,605 CAN STILL USE THIS ONE FOR 654 00:29:35,605 --> 00:29:35,972 TRACKING CHANGE. 655 00:29:35,972 --> 00:29:38,308 WARE FOCUSSING PRIMARY OUTCOMES 656 00:29:38,308 --> 00:29:41,845 ON THE HD RATING SCALES FOR 657 00:29:41,845 --> 00:29:42,979 ATTENTIVE AND HYPERACTIVE 658 00:29:42,979 --> 00:29:43,246 SYMPTOMS. 659 00:29:43,246 --> 00:29:44,581 IN TERMS OF SECONDARY OUTCOME 660 00:29:44,581 --> 00:29:46,282 MEASURES WE'RE LOOKING AT THE 661 00:29:46,282 --> 00:29:47,450 CHILD BEHAVIOR CHECKLIST. 662 00:29:47,450 --> 00:29:49,085 WHAT WAS INTERESTING IS THERE 663 00:29:49,085 --> 00:29:49,853 WAS A MEASURE THAT 664 00:29:49,853 --> 00:29:51,688 DIFFERENTIATED THE KIDS BUT ALL 665 00:29:51,688 --> 00:29:52,856 THE KIDS WERE BELOW CLINICAL 666 00:29:52,856 --> 00:29:54,491 THRESHOLD THE RED LINE. 667 00:29:54,491 --> 00:29:56,626 IF WE LOOK AT MEASURES WE HAVE 668 00:29:56,626 --> 00:29:58,261 TO THINK WHAT THE CLINICAL 669 00:29:58,261 --> 00:29:59,362 THRESHOLD IS IN THE GENERAL 670 00:29:59,362 --> 00:30:00,597 POPULATION AND IN DOWN SYNDROME. 671 00:30:00,597 --> 00:30:03,600 WE WERE ABLE TO SELECT TWO 672 00:30:03,600 --> 00:30:04,601 MEASURES HERE THE EXTERNALIZING 673 00:30:04,601 --> 00:30:05,268 SYMPTOMS AS A SECONDARY OUTCOME 674 00:30:05,268 --> 00:30:12,542 MEASURE. 675 00:30:12,542 --> 00:30:15,712 THING A MEASURE OF EXECUTIVE 676 00:30:15,712 --> 00:30:18,281 FUNCTIONING ALL THE KIDS WERE 677 00:30:18,281 --> 00:30:20,650 HIGH ON THE RIGHT SIDE AS A 678 00:30:20,650 --> 00:30:23,520 CLINICAL THRESHOLD AND THE 679 00:30:23,520 --> 00:30:24,220 TEACHERS WERE SCORING HIGH ON 680 00:30:24,220 --> 00:30:26,789 THE MEASURES AND WE WERE ABLE 681 00:30:26,789 --> 00:30:28,625 TOFIDE TWO MEASURES USED AS TWO 682 00:30:28,625 --> 00:30:30,226 PRIMARY OUTCOME MEASURES AND 683 00:30:30,226 --> 00:30:32,061 SECONDARY OUTCOME MEASURES WHICH 684 00:30:32,061 --> 00:30:33,897 I'LL GO OVER MORE IN THE OTHER 685 00:30:33,897 --> 00:30:34,197 SLIDES. 686 00:30:34,197 --> 00:30:39,035 GETTING TO OUR DESIGN WE WERE 687 00:30:39,035 --> 00:30:40,470 PHENOTYPING ALL THE KIDS AT THE 688 00:30:40,470 --> 00:30:42,972 BASELINE VISIT AND HAD EXCLUSION 689 00:30:42,972 --> 00:30:44,741 CRITERIA FOR THOSE WITH SEVERE 690 00:30:44,741 --> 00:30:46,543 CARDIAC DIFFICULTIES AND WANTED 691 00:30:46,543 --> 00:30:47,810 TO INCLUDE FOR SAFETY AND COULD 692 00:30:47,810 --> 00:30:49,679 HAVE OTHERS WE COULD MONITOR. 693 00:30:49,679 --> 00:30:51,781 KIDS GO THROUGH PHASE 1 AND A 694 00:30:51,781 --> 00:30:53,082 TRITRATION. 695 00:30:53,082 --> 00:30:54,250 MEANING WE DON'T KNOW WHAT WEEK 696 00:30:54,250 --> 00:30:57,787 WILL BE THE BLINDED WEEK OF 697 00:30:57,787 --> 00:31:02,125 PLACEBO BUT WE'LL TRITATE THEM 698 00:31:02,125 --> 00:31:03,726 BASED ON THEIR WEIGHT AND THEN 699 00:31:03,726 --> 00:31:06,930 IDENTIFY THE END OF THAT WHAT 700 00:31:06,930 --> 00:31:07,897 THEIR OPTIMAL DOSE IS BASED ON 701 00:31:07,897 --> 00:31:09,098 THE PARENT, TEACHER AND 702 00:31:09,098 --> 00:31:12,068 CLINICIAN AND THEN GET 703 00:31:12,068 --> 00:31:12,502 RANDOMIZED. 704 00:31:12,502 --> 00:31:16,139 EVERYONE HAS THE CROSSOVER AND 705 00:31:16,139 --> 00:31:18,441 THEY GET RANDOMIZED TO THE 706 00:31:18,441 --> 00:31:19,576 OPTIMAL DOSE WEEK. 707 00:31:19,576 --> 00:31:21,444 WE JUST DON'T KNOW WHEN BUT IT 708 00:31:21,444 --> 00:31:23,446 COULD BE THE OPTIMAL DOSE AND 709 00:31:23,446 --> 00:31:24,547 PLACEBO AND NEXT WEEK GET 710 00:31:24,547 --> 00:31:27,717 PLACEBO OR SOME RANDOM OF A TO 711 00:31:27,717 --> 00:31:29,085 GET PLACEBO AND THE OPTIMIZED 712 00:31:29,085 --> 00:31:29,385 DOSE. 713 00:31:29,385 --> 00:31:30,820 THAT THE POINT WE MOVE TO OPEN 714 00:31:30,820 --> 00:31:31,387 LABEL. 715 00:31:31,387 --> 00:31:32,922 WE HAVE SIX MONTHS OF OPEN LABEL 716 00:31:32,922 --> 00:31:38,328 WHERE WE'RE ABLE TO MAKE DOSE 717 00:31:38,328 --> 00:31:42,198 ADJUSTS AND THERE'S LOTS OF 718 00:31:42,198 --> 00:31:45,435 TRACKING OF SYMPTOMS AND ADVERSE 719 00:31:45,435 --> 00:31:47,570 EVENTS. 720 00:31:47,570 --> 00:31:49,806 WE DID THIS INTENTIONALLY. 721 00:31:49,806 --> 00:31:53,843 AND ONE THOUGHT I HAD YESTERDAY 722 00:31:53,843 --> 00:31:55,545 IN THE SCIENCE SIDE OF THINGS WE 723 00:31:55,545 --> 00:31:57,547 HAD TO CHOOSE THE LIQUID FORM. 724 00:31:57,547 --> 00:31:59,949 IT'S HARD TO GET PRESCRIBED IN 725 00:31:59,949 --> 00:32:01,951 THE END BUT IN ORDER FOR EVER TO 726 00:32:01,951 --> 00:32:05,388 BE ABLE TO SWALLOW WE WERE 727 00:32:05,388 --> 00:32:08,057 TALKING ABOUT SWALLOWING 728 00:32:08,057 --> 00:32:09,392 MEDICATION, SO IF YOU HAVE A 729 00:32:09,392 --> 00:32:11,628 PILL FORM YOU CAN'T VIT 730 00:32:11,628 --> 00:32:12,295 ACCESSIBLE TO EVERYBODY BECAUSE 731 00:32:12,295 --> 00:32:13,630 NOT EVERYONE CAN TAKE THE PILL 732 00:32:13,630 --> 00:32:15,164 SO YOU'RE RESTRICTING THE 733 00:32:15,164 --> 00:32:15,732 SAMPLE. 734 00:32:15,732 --> 00:32:17,600 WE WERE TRIPLE BLINDED SO THE 735 00:32:17,600 --> 00:32:19,769 PARENT, TEACHER, STUDY STAFF 736 00:32:19,769 --> 00:32:21,738 DIDN'T KNOW WHAT THEY WERE 737 00:32:21,738 --> 00:32:24,540 RECEIVING, THE PHARMACY DID AND 738 00:32:24,540 --> 00:32:25,875 IN OUR TRIAL WE RAN 16 KIDS 739 00:32:25,875 --> 00:32:27,543 THROUGH THE TRIAL AGAIN TO HELP 740 00:32:27,543 --> 00:32:29,379 IDENTIFY WHAT OUR PRIMARY AND 741 00:32:29,379 --> 00:32:30,413 SECONDARY OUTCOME MEASURES WERE 742 00:32:30,413 --> 00:32:31,948 AND OUR EFFECT SIZES. 743 00:32:31,948 --> 00:32:35,385 WE WERE NICELY POWERED WITH 744 00:32:35,385 --> 00:32:37,487 LARGE AND MEDIUM EFFECT SIZES. 745 00:32:37,487 --> 00:32:39,922 SO NOW IN OUR R33 PHASE WE STILL 746 00:32:39,922 --> 00:32:43,760 WANT TO ROLL 100 KIDS, MOSTLY TO 747 00:32:43,760 --> 00:32:45,028 BE ABLE TO DOCUMENT THE ADVERSE 748 00:32:45,028 --> 00:32:46,362 OR RATES OF ADVERSE EVENTS WHAT 749 00:32:46,362 --> 00:32:48,865 TYPE THEY ARE, HOW THEY MAY BE 750 00:32:48,865 --> 00:32:49,999 PRESENTING DIFFERENTLY IN OUR 751 00:32:49,999 --> 00:32:52,435 KIDS BECAUSE THEY MAY SEE 752 00:32:52,435 --> 00:32:55,405 IRRITABILITY AND THAT NABE 753 00:32:55,405 --> 00:32:57,440 STOMACH ACHE PRESENTING AS 754 00:32:57,440 --> 00:32:58,675 IRRITABILITY AND HELPS TO KNOW 755 00:32:58,675 --> 00:33:00,143 WHAT THE PHYSICIAN TO LOOK FOR 756 00:33:00,143 --> 00:33:02,945 AND LOOKING AT SHORT AND 757 00:33:02,945 --> 00:33:04,280 LONG-TERM EFFICACY AND LOOKING 758 00:33:04,280 --> 00:33:05,782 AT 12 TO 50 KIDS TO SHOW IT 759 00:33:05,782 --> 00:33:06,916 WORKS BECAUSE WE KNOW IT WORKS 760 00:33:06,916 --> 00:33:09,485 AN TO LOOK AT MODERATORS. 761 00:33:09,485 --> 00:33:13,656 BECAUSE WE CURRENTLY HAVE 22 762 00:33:13,656 --> 00:33:15,658 KIDS RAN DEMOCRATIZED WHERE 763 00:33:15,658 --> 00:33:19,729 WE'RE HAVING A SUPPLEMENT TO 764 00:33:19,729 --> 00:33:21,164 ENROLL BOSTON CHILDREN'S 765 00:33:21,164 --> 00:33:22,565 HOSPITAL AND PITTSBURGH TO HELP 766 00:33:22,565 --> 00:33:24,434 WITH OUR RECRUITMENT AND WE WANT 767 00:33:24,434 --> 00:33:28,271 TO HAVE LEARNINGS AND LOOKING AT 768 00:33:28,271 --> 00:33:30,106 THE LANDMARK ADHD TRIALS AND 769 00:33:30,106 --> 00:33:32,008 THESE ARE THE RATES OF 770 00:33:32,008 --> 00:33:33,409 WITHDRAWALS AND PLACEBO 771 00:33:33,409 --> 00:33:34,677 RESPONDERS THEY WERE HAVING AND 772 00:33:34,677 --> 00:33:37,547 THEN ALSO THE OPTIMAL DOSE THE 773 00:33:37,547 --> 00:33:40,783 KIDS ENDED UP BEING ON. 774 00:33:40,783 --> 00:33:42,752 NICELY EVEN. 775 00:33:42,752 --> 00:33:46,155 OPTIMAL WAS I LOW DOSE AND THAT 776 00:33:46,155 --> 00:33:48,024 WAS THEIR BEST DOSE TO RESPOND 777 00:33:48,024 --> 00:33:48,191 TO. 778 00:33:48,191 --> 00:33:51,728 AND LOOKING AT THE RESEARCH AND 779 00:33:51,728 --> 00:33:53,396 PEDIATRIC PSYCHO PHARMACOLOGY 780 00:33:53,396 --> 00:33:54,697 LOOKING AT DOWN STUDIES IN 781 00:33:54,697 --> 00:33:55,832 AUTISM. 782 00:33:55,832 --> 00:33:59,135 LOOKING AT OKAY, ANOTHER DD 783 00:33:59,135 --> 00:34:00,737 POPULATION WHAT'S THEIR RATE OF 784 00:34:00,737 --> 00:34:01,971 WITHDRAWALS AND PLACEBO 785 00:34:01,971 --> 00:34:02,271 RESPONDERS. 786 00:34:02,271 --> 00:34:04,941 WE'RE HAVING A REALLY LOW RATE 787 00:34:04,941 --> 00:34:07,110 OF PLACEBO RESPONDERS AND HAVING 788 00:34:07,110 --> 00:34:09,746 MORE LIKE I DON'T LIKE THE SIDE 789 00:34:09,746 --> 00:34:15,184 EFFECTS AND TRITATION AND I'M 790 00:34:15,184 --> 00:34:20,523 OUT AND WE HAVE HIGHER RATES OF 791 00:34:20,523 --> 00:34:21,791 WITHDRAWALS AND ALSO HAVING NO 792 00:34:21,791 --> 00:34:23,726 KIDS DUE TO THE HIGH DOSE. 793 00:34:23,726 --> 00:34:25,561 THEY'RE DOING TO THE LOWER 794 00:34:25,561 --> 00:34:25,995 DOSES. 795 00:34:25,995 --> 00:34:29,832 YOU START AT A LOW DOSE AND GO 796 00:34:29,832 --> 00:34:31,667 SLOW WITH YOUR TRITATION 797 00:34:31,667 --> 00:34:32,335 MEDICATION AND SOMETHING PEOPLE 798 00:34:32,335 --> 00:34:33,302 KNOW CLINICALLY AND NOW SHOWING 799 00:34:33,302 --> 00:34:37,373 THAT SO IT WILL BE HELPFUL TO 800 00:34:37,373 --> 00:34:38,007 PEDIATRICIANS IN THE COMMUNITY. 801 00:34:38,007 --> 00:34:39,675 THE THINGS LIKE I LOVE HAVING 802 00:34:39,675 --> 00:34:41,944 THE MEETINGS BAU YOU HEAR OTHER 803 00:34:41,944 --> 00:34:43,346 PEOPLE PRESENT AND MAKES YOU ASK 804 00:34:43,346 --> 00:34:44,547 MORE QUESTIONS EVEN YESTERDAY 805 00:34:44,547 --> 00:34:46,048 THE OTHER QUESTIONS I WANTED TO 806 00:34:46,048 --> 00:34:49,352 KNOW IS DO WE HAVE PEOPLE TO DO 807 00:34:49,352 --> 00:34:56,559 PHARMACO KINETIC STUDIES AND 808 00:34:56,559 --> 00:34:57,460 CAN WE HAVE PILLS MORE IN THE 809 00:34:57,460 --> 00:35:02,965 LIQUID FORM SO WE'RE NOT ALWAYS 810 00:35:02,965 --> 00:35:05,101 MAKING OUR ROADS AND STREETS 811 00:35:05,101 --> 00:35:07,370 MORE ACCESSIBLE FOR EVERYBODY 812 00:35:07,370 --> 00:35:09,405 AND MEDICATION AVAILABLE TO 813 00:35:09,405 --> 00:35:10,540 EVERYBODY REGARDLESS OF 814 00:35:10,540 --> 00:35:12,909 SWALLOWING ABILITIES IS MY HOPE. 815 00:35:12,909 --> 00:35:15,611 OTHER LEARNINGS WE HAVE IS WE 816 00:35:15,611 --> 00:35:16,913 HAVE COMMITTED FAMILIES BUT 817 00:35:16,913 --> 00:35:18,181 THERE'S ALWAYS BARRIERS TO TIME 818 00:35:18,181 --> 00:35:20,016 AND RECRUITMENT SO WHEN WE SET 819 00:35:20,016 --> 00:35:22,318 UP TRIALS, HOW CAN WE INCLUDE 820 00:35:22,318 --> 00:35:23,052 MORE TELEHEALTH VISITS AND MAKE 821 00:35:23,052 --> 00:35:25,555 IT SO WE'RE ABLE TO GET BLOOD 822 00:35:25,555 --> 00:35:27,190 PRESSURE AND HEART RATE 823 00:35:27,190 --> 00:35:29,292 VIRTUALLY THROUGH THE DIFFERENT 824 00:35:29,292 --> 00:35:29,559 DEVICES. 825 00:35:29,559 --> 00:35:31,093 HOW CAN WE SUPPORT THE KIDS IN 826 00:35:31,093 --> 00:35:36,833 TERMS OF MANAGING THEIR EKG 827 00:35:36,833 --> 00:35:38,534 BECAUSE THEY SAY CHECK MY BLOOD 828 00:35:38,534 --> 00:35:38,801 PRESSURE. 829 00:35:38,801 --> 00:35:42,638 THE KIDS THAT DIDN'T HAVE IT ARE 830 00:35:42,638 --> 00:35:43,940 LIKE WHAT ARE YOU DOING? 831 00:35:43,940 --> 00:35:46,342 GET THIS OFF ME. 832 00:35:46,342 --> 00:35:48,044 AND UNDERSTANDING THE PEOPLE 833 00:35:48,044 --> 00:35:48,477 WE'RE GETTING. 834 00:35:48,477 --> 00:35:50,079 WE'RE RESCREENING 130 KIDS AND 835 00:35:50,079 --> 00:35:52,148 THOSE WHO MET CRITERIA AND THOSE 836 00:35:52,148 --> 00:35:53,416 INTERESTED YOU'RE GETTING MAYBE 837 00:35:53,416 --> 00:35:55,017 A 10% HIT RATE. 838 00:35:55,017 --> 00:35:56,986 IT ENDS UP BE A SMALL 839 00:35:56,986 --> 00:35:57,286 POPULATION. 840 00:35:57,286 --> 00:35:58,054 WE NEED HAVE MORE SITES IN OUR 841 00:35:58,054 --> 00:36:06,095 CLINICAL TRIALS. 842 00:36:06,095 --> 00:36:07,530 WE NEED EARLIER DOSES SO INSTEAD 843 00:36:07,530 --> 00:36:12,134 OF WEEKLY VISITS WE'RE GOING TO 844 00:36:12,134 --> 00:36:14,670 BIWEEKLY VISITS SO THE TRITATION 845 00:36:14,670 --> 00:36:16,973 PHASE TAKES LONGER AND CROSSOVER 846 00:36:16,973 --> 00:36:19,508 AND MAYBE SOMETHING HAPPENS AT 847 00:36:19,508 --> 00:36:25,414 SCHOOL BECAUSE OF A BEHAVIOR AND 848 00:36:25,414 --> 00:36:26,782 WE CHANGE OUR LABEL AND IT TAKES 849 00:36:26,782 --> 00:36:29,418 A VILLAGE TO DO CLINICAL TRIALS 850 00:36:29,418 --> 00:36:33,422 INCLUDING THE NIH SO APPRECIATE 851 00:36:33,422 --> 00:36:43,766 YOU HAVING US HERE. 852 00:36:46,435 --> 00:36:51,807 >> LET'S WELCOME OUR NEXT 853 00:36:51,807 --> 00:36:55,211 SPEAKER DR. SANTORO. 854 00:36:55,211 --> 00:36:57,213 >> THANK YOU SOME OF FOR THE 855 00:36:57,213 --> 00:36:58,481 INTRODUCTION AND I GET THE 856 00:36:58,481 --> 00:37:00,716 DISTINCT HONOR OF TALKING TO YOU 857 00:37:00,716 --> 00:37:03,819 ALL ABOUT THE MOST INTERESTING 858 00:37:03,819 --> 00:37:05,421 TRIAL THE NIH IS FUNDING RIGHT 859 00:37:05,421 --> 00:37:07,590 NOW. 860 00:37:07,590 --> 00:37:11,427 SO REALLY TALK ABOUT WHAT DOWN 861 00:37:11,427 --> 00:37:12,128 SYNDROME REGRESSION IS. 862 00:37:12,128 --> 00:37:13,029 THERE'S BEEN A LOT OF INTEREST 863 00:37:13,029 --> 00:37:14,297 OVER THE LAST FIVE YEARS AND 864 00:37:14,297 --> 00:37:16,966 SOME ACCOMPLISHMENTS IN THE 865 00:37:16,966 --> 00:37:21,971 FIELD HAVE BEEN DEFINING WHAT 866 00:37:21,971 --> 00:37:32,481 THIS IS AND THE FIRST SYMPTOM 867 00:37:34,817 --> 00:37:37,019 REGRESSION DISORDER WAS IN 1986 868 00:37:37,019 --> 00:37:38,854 AND THERE WERE A FEW CASE 869 00:37:38,854 --> 00:37:39,989 REPORTS IN THE LITERATURE THOUGH 870 00:37:39,989 --> 00:37:41,457 WE KNOW IT WAS AFFECTING 871 00:37:41,457 --> 00:37:42,992 INDIVIDUALS IN THE COMMUNITY AND 872 00:37:42,992 --> 00:37:45,394 FROM 2019 ON WITH A PAPER OUT OF 873 00:37:45,394 --> 00:37:47,530 DUKE, WE SAW THAT IMMUNOTHERAPY 874 00:37:47,530 --> 00:37:50,633 MAY BE A WAY TO TREAT THIS 875 00:37:50,633 --> 00:37:51,334 CONDITION DIFFERENT THAN SOME OF 876 00:37:51,334 --> 00:37:54,503 THE PSYCHO TROPICS WE HAD 877 00:37:54,503 --> 00:37:55,671 TRADITIONALLY BEEN USING. 878 00:37:55,671 --> 00:37:57,807 THE KEY FEATURES I'VE INCLUDE 879 00:37:57,807 --> 00:37:59,909 THE LIST OF SYMPTOMS INDIVIDUALS 880 00:37:59,909 --> 00:38:03,312 WITH DSRD EXPERIENCE BUT THE KEY 881 00:38:03,312 --> 00:38:07,616 FEATURE IS IT'S SUDDEN AND 882 00:38:07,616 --> 00:38:09,285 DRAMATIC AND HIGH FUNCTIONING 883 00:38:09,285 --> 00:38:09,919 INDIVIDUALS WITH DOWN SYNDROME 884 00:38:09,919 --> 00:38:12,722 WHO OVER WEEKS OR DAYS WILL 885 00:38:12,722 --> 00:38:14,690 DETERIORATE AND LOSE FUNCTIONAL 886 00:38:14,690 --> 00:38:15,524 STATUS. 887 00:38:15,524 --> 00:38:17,293 PRECEDED BY STRESSORS, 888 00:38:17,293 --> 00:38:18,427 ENVIRONMENTAL OR ILLNESS IN 50% 889 00:38:18,427 --> 00:38:19,662 OF CASES. 890 00:38:19,662 --> 00:38:20,930 THE INTERESTING PIECE IS THIS IS 891 00:38:20,930 --> 00:38:22,932 OCCURRING IN INDIVIDUALS MOSTLY 892 00:38:22,932 --> 00:38:25,634 BETWEEN 10 AND 30 YEARS OF AGE. 893 00:38:25,634 --> 00:38:28,604 TOO LATE FOR THE TRADITIONAL 894 00:38:28,604 --> 00:38:30,373 DIAGNOSIS OF AUTISM SPECTRUM 895 00:38:30,373 --> 00:38:32,308 DISORDER AND TOO EARLY FOR THE 896 00:38:32,308 --> 00:38:32,842 DIAGNOSIS OF ALZHEIMER'S 897 00:38:32,842 --> 00:38:33,075 DISEASE. 898 00:38:33,075 --> 00:38:39,148 WHEN WE LOOK AT THE SYMPTOMS, 899 00:38:39,148 --> 00:38:49,558 INSOMNIA, CATATONIA AND 900 00:38:54,296 --> 00:38:56,532 OBSESSIVE, COMPULSIVE ACTIVITY, 901 00:38:56,532 --> 00:38:59,335 NEW AUTISTIC FEATURES WHERE THEY 902 00:38:59,335 --> 00:39:01,203 DID NOT EXIST PREVIOUSLY AND 903 00:39:01,203 --> 00:39:10,279 SOME YOUNG MALES WE'LL SEOSE 904 00:39:10,279 --> 00:39:15,451 PSYCHOSIS AND WE'LL FIND 905 00:39:15,451 --> 00:39:22,091 INDIVIDUALS LOWS THE AND LOSS OF 906 00:39:22,091 --> 00:39:26,362 LANGUAGE IS A CRITICAL FEATURE 907 00:39:26,362 --> 00:39:29,398 THAT BRINGS PEOPLE IN FOR 908 00:39:29,398 --> 00:39:35,604 MEDICAL CARE. 909 00:39:35,604 --> 00:39:39,909 AND HERE'S A MAN WITH CATATONIA 910 00:39:39,909 --> 00:39:44,146 AND WHEN YOU PUT THEM IN AN 911 00:39:44,146 --> 00:39:46,015 UNCOMFORTABLE POSITION THEY'LL 912 00:39:46,015 --> 00:39:48,951 MAINTAIN IT IN PERPETUITY. 913 00:39:48,951 --> 00:39:51,821 THIS YOUNG MAN WILL STAY THIS 914 00:39:51,821 --> 00:39:53,422 WAY FOR 45 MINUTES UNLESS YOU 915 00:39:53,422 --> 00:39:55,691 TAKE HIM OUT AND THIS YOUNG MAN 916 00:39:55,691 --> 00:39:57,393 LOST 40 POUNDS OVER THE PERIOD 917 00:39:57,393 --> 00:39:59,528 OF SIX MONTHS BECAUSE HE CAN'T 918 00:39:59,528 --> 00:40:01,931 FEED HIMSELF ANYMORE BECAUSE HE 919 00:40:01,931 --> 00:40:03,199 MOVES SO SLOW. 920 00:40:03,199 --> 00:40:06,335 HE WILL NOT INITIATE MOVEMENT 921 00:40:06,335 --> 00:40:09,305 UNLESS HE'S PHYSICALLY GUIDED. 922 00:40:09,305 --> 00:40:10,306 THEY'LL TRY TO GET HIM TO TURN 923 00:40:10,306 --> 00:40:18,280 AROUND HERE. 924 00:40:18,280 --> 00:40:20,716 THE NEXT YOUNG MAN SHOWING THE 925 00:40:20,716 --> 00:40:21,417 MAINTENANCE OF UNCOMFORTABLE 926 00:40:21,417 --> 00:40:25,221 POSITIONS. 927 00:40:25,221 --> 00:40:26,789 NORMALLY HE WOULD DROP HIS HANDS 928 00:40:26,789 --> 00:40:27,590 AND GO BACK TO EVEN WITH 929 00:40:27,590 --> 00:40:37,766 COMMANDS. 930 00:40:42,071 --> 00:40:45,407 WE STARTED TO PHENOTYPE AND TRY 931 00:40:45,407 --> 00:40:46,876 DIFFERENT CONDITIONS AND WE HAD 932 00:40:46,876 --> 00:40:49,411 DIAGNOSTIC CRITERIA AND WORKUP 933 00:40:49,411 --> 00:40:53,415 AND FOLLOWED WITH EVIDENCE OF 934 00:40:53,415 --> 00:40:56,685 NEURO INFLAMMATION AND DETECT 935 00:40:56,685 --> 00:41:00,556 ABNORMALITIES THAT COULD BE 936 00:41:00,556 --> 00:41:01,657 MODIFIED WITH IMMUNE THERAPY AND 937 00:41:01,657 --> 00:41:04,627 THE ABILITY TO TAKE PATIENTS OFF 938 00:41:04,627 --> 00:41:07,163 IMMUNOTHERAPY AND HAS THE 939 00:41:07,163 --> 00:41:08,631 POTENTIAL TO BE DISEASE 940 00:41:08,631 --> 00:41:11,066 MODIFYING AND SAFELY PAPERS AND 941 00:41:11,066 --> 00:41:14,036 THE MOST RECENT PAPER ON 942 00:41:14,036 --> 00:41:17,273 NEUROIMAGING BEING PREDICTIVE OF 943 00:41:17,273 --> 00:41:18,274 IMMUNOTHERAPY RESPONSE AND WE 944 00:41:18,274 --> 00:41:19,975 HAD HAPPY PATIENTS. 945 00:41:19,975 --> 00:41:20,943 THOSE RECOVERING THEIR ABILITY 946 00:41:20,943 --> 00:41:24,980 TO DO THINGS AND ENGAGE WITH 947 00:41:24,980 --> 00:41:26,015 FAMILY, LOVED ONES AND 948 00:41:26,015 --> 00:41:27,716 COMMUNITIES AND THAT IMPORTANT 949 00:41:27,716 --> 00:41:29,818 AS WE INCREASE OUR ABILITY TO 950 00:41:29,818 --> 00:41:33,355 DETECT IT, FIND IT, TREAT IT AND 951 00:41:33,355 --> 00:41:33,789 MOVE ON FROM THERE. 952 00:41:33,789 --> 00:41:34,957 SO FROM THIS TIME WHERE WE'RE 953 00:41:34,957 --> 00:41:36,926 REALLY JUST STARTING TO 954 00:41:36,926 --> 00:41:38,794 PHENOTYPE THIS CONDITION WITHIN 955 00:41:38,794 --> 00:41:42,932 A YEAR, WE'RE STARTING TO APPLY 956 00:41:42,932 --> 00:41:48,137 FOR A CLINICAL TRIAL AND THEN 957 00:41:48,137 --> 00:41:52,174 STARTING THE ENROLLMENT THIS IS 958 00:41:52,174 --> 00:41:54,276 A COMBINED EFFORT. 959 00:41:54,276 --> 00:41:55,578 LOTS OF HANDSOME INDIVIDUALS ON 960 00:41:55,578 --> 00:41:56,145 THE SLIDE. 961 00:41:56,145 --> 00:41:58,981 I'M ON THE FAR LEFT BUT IT'S A 962 00:41:58,981 --> 00:42:00,282 GROUP EFFORT WITH UNIVERSITY OF 963 00:42:00,282 --> 00:42:02,818 COLORADO AS WELL WITH A TEAM OF 964 00:42:02,818 --> 00:42:04,386 PSYCHIATRISTS, NEUROLOGIST AND 965 00:42:04,386 --> 00:42:05,254 PSYCHOLOGISTS ALL WORKING 966 00:42:05,254 --> 00:42:12,094 TOGETHER FOR THE PURPOSES OF THE 967 00:42:12,094 --> 00:42:13,195 TRIAL. 968 00:42:13,195 --> 00:42:16,031 EFFICACY OF AND OUR THIRD AIM IS 969 00:42:16,031 --> 00:42:17,733 TO DETERMINE ARE THERE WAYS TO 970 00:42:17,733 --> 00:42:18,767 DETECT WHO IS GOING TO RESPOND 971 00:42:18,767 --> 00:42:19,735 TO WHAT THERAPY? 972 00:42:19,735 --> 00:42:23,038 I THINK THIS IS THE KEY UNMET 973 00:42:23,038 --> 00:42:25,708 NEED WITHIN DSRD WE KNOW IT WHEN 974 00:42:25,708 --> 00:42:27,710 WE SEE IT AND KNOW THERE'S A 975 00:42:27,710 --> 00:42:29,445 VARIETY OF THERAPIES BUT UP 976 00:42:29,445 --> 00:42:31,380 FRONT WE LACK THE ABILITY TO SAY 977 00:42:31,380 --> 00:42:33,382 THIS IS THE PREFERRED TREATMENT 978 00:42:33,382 --> 00:42:35,084 FOR THE INDIVIDUAL. 979 00:42:35,084 --> 00:42:38,520 I KNOW I'M PREACHING TO THE 980 00:42:38,520 --> 00:42:42,491 CHOIR AND PHASE II TRIALS. 981 00:42:42,491 --> 00:42:45,594 FOR OUR THREE ARMS WERE ALL OPEN 982 00:42:45,594 --> 00:42:46,462 LABEL. 983 00:42:46,462 --> 00:42:48,464 PATIENTS KNEW WHAT WE WERE 984 00:42:48,464 --> 00:42:50,299 GETTING. 985 00:42:50,299 --> 00:42:51,900 WE WEREN'T ANTICIPATING PLACEBO 986 00:42:51,900 --> 00:43:01,410 EFFECT AND WE HAD TREATMENT OF 987 00:43:01,410 --> 00:43:08,851 LORAZEPAM AND WE HAVE AN IMMUNE 988 00:43:08,851 --> 00:43:19,328 GLOBULIN AND JAK INHIBITOR, 989 00:43:22,531 --> 00:43:25,734 TOFACITNIB AND A PATIENT COULD 990 00:43:25,734 --> 00:43:27,736 ENROLL AND DO 12 WEEKS OF NO 991 00:43:27,736 --> 00:43:29,004 THERAPY AND A LITTLE BIT SIMILAR 992 00:43:29,004 --> 00:43:30,706 TO A CROSSOVER DESIGN BUT NOT 993 00:43:30,706 --> 00:43:31,340 EVERY SINGLE PATIENT HAD TO GO 994 00:43:31,340 --> 00:43:41,583 THROUGH THAT. 995 00:43:56,065 --> 00:43:57,399 WE LOOKED AT DIFFERENT MEASURES. 996 00:43:57,399 --> 00:44:00,269 THE STUDY DESIGN WAS RELATIVELY 997 00:44:00,269 --> 00:44:00,569 SIMPLISTIC. 998 00:44:00,569 --> 00:44:02,538 THERE WAS A SCREENING PERIOD 999 00:44:02,538 --> 00:44:03,472 THAT OCCURS WITHIN FOUR WEEKS OF 1000 00:44:03,472 --> 00:44:05,941 THE ENROLLMENT AND RANDOMIZED ON 1001 00:44:05,941 --> 00:44:07,376 THE BASELINE VISIT AND GETTING 1002 00:44:07,376 --> 00:44:09,678 EVERY TWO WEEK VISIT FOR THE 1003 00:44:09,678 --> 00:44:14,316 FIRST MONTH SPACING OUT THERE 1004 00:44:14,316 --> 00:44:17,619 AFTER WITH MRI STUDIES BACK 1005 00:44:17,619 --> 00:44:18,754 SIDE. 1006 00:44:18,754 --> 00:44:19,788 BECAUSE WE USE THE CLINICAL 1007 00:44:19,788 --> 00:44:26,161 CRITERIA WE WERE ABLE TO OBVIATE 1008 00:44:26,161 --> 00:44:29,865 THE REPEAT AS PATIENTS ENROLLED. 1009 00:44:29,865 --> 00:44:34,002 THE BIGGEST PIECE IS WE KNOW 1010 00:44:34,002 --> 00:44:36,805 SOME WORK IN A HETEROGENOUS 1011 00:44:36,805 --> 00:44:40,376 COHORT HAND TO FIGURE OUT IF 1012 00:44:40,376 --> 00:44:45,414 IT'S EVIDENCE OF INFLAMMATION 1013 00:44:45,414 --> 00:44:48,484 AKIN TO AUTO IMMUNE OR INTRINSIC 1014 00:44:48,484 --> 00:44:50,619 TO INDIVIDUALS WITH DOWN 1015 00:44:50,619 --> 00:44:53,389 SYNDROME AND WE THINK DSRD MAY 1016 00:44:53,389 --> 00:44:57,693 BE SPECIFIC TO INDIVIDUALS WITH 1017 00:44:57,693 --> 00:45:01,830 DOWN SYNDROME. 1018 00:45:01,830 --> 00:45:03,932 WE'RE LOOKING AT THE SECONDARY 1019 00:45:03,932 --> 00:45:09,238 RATES VERSUS THE PSYCHO TROPIC 1020 00:45:09,238 --> 00:45:20,015 MEDICATIONS SUCH AS BENZ OWE -- 1021 00:45:21,850 --> 00:45:27,189 BENZ ODIAZAPINES AND LOOKING AT 1022 00:45:27,189 --> 00:45:33,128 THOSE WHO SHOULD GO ON TO 1023 00:45:33,128 --> 00:45:33,729 IMMUNOTHERAPY VERSUS NOT AND 1024 00:45:33,729 --> 00:45:37,399 USING A CLINICAL TRIAL TO DO THE 1025 00:45:37,399 --> 00:45:47,743 BASIC SCIENCE WORK. 1026 00:45:49,845 --> 00:45:50,946 AND WE CAN SYNERGIZE OUR 1027 00:45:50,946 --> 00:45:52,314 CLINICAL TRIALS GOING FORWARD. 1028 00:45:52,314 --> 00:46:02,691 I HAVE A BRIEF UPDATE. 1029 00:46:07,329 --> 00:46:09,531 WE HAD TO DEFER A LOT OF PATIENT 1030 00:46:09,531 --> 00:46:10,699 WHO'S HAVE SYMPTOMS AND MEET 1031 00:46:10,699 --> 00:46:15,938 CRITERIA AND HAVE ALL THE 1032 00:46:15,938 --> 00:46:17,406 DIAGNOSTIC STUDIES DONE BUT 1033 00:46:17,406 --> 00:46:20,609 CAN'T GET THEM IN AND THEY'RE 1034 00:46:20,609 --> 00:46:22,911 READY FOR THE R33 PHASE AND HOPE 1035 00:46:22,911 --> 00:46:26,114 TO GET IT READY WITH THE NIH 1036 00:46:26,114 --> 00:46:28,851 SUMMER OF 2024. 1037 00:46:28,851 --> 00:46:30,719 ENROLLMENT PROCEEDED MUCH FASTER 1038 00:46:30,719 --> 00:46:33,155 THAN WE THOUGHT AND THESE ARE 1039 00:46:33,155 --> 00:46:35,157 THE SLIDES WE WANT TO SHOW WE'RE 1040 00:46:35,157 --> 00:46:38,760 THREE TO FOUR MONTHS AHEAD OF 1041 00:46:38,760 --> 00:46:39,862 SCHEDULE BECAUSE THERE WAS HIGH 1042 00:46:39,862 --> 00:46:40,496 INTEREST AND THE OUTCOME WE'RE 1043 00:46:40,496 --> 00:46:41,430 SEEING. 1044 00:46:41,430 --> 00:46:43,165 WHEN WE LOOKED AT THE 1045 00:46:43,165 --> 00:46:44,700 RANDOMIZATION FOR THE FIRST 16 1046 00:46:44,700 --> 00:46:45,968 PATIENTS IT WAS PRETTY EVEN 1047 00:46:45,968 --> 00:46:46,668 ACROSS THE BOARD. 1048 00:46:46,668 --> 00:46:47,669 NO SURPRISE THERE'S. 1049 00:46:47,669 --> 00:46:51,974 AND THE EARLY FINDINGS, I DON'T 1050 00:46:51,974 --> 00:46:54,910 HAVE THE GREAT PRELIM DATA BUT 1051 00:46:54,910 --> 00:46:58,747 THE RAPID ENROLLMENT WAS EVIDENT 1052 00:46:58,747 --> 00:47:00,449 EARLY AT OUR L.A. SITE 1053 00:47:00,449 --> 00:47:01,783 APPROXIMATELY 60% OF PATIENTS 1054 00:47:01,783 --> 00:47:03,185 TRAVELED GREATER THAN 500 MILES 1055 00:47:03,185 --> 00:47:05,320 TO PARTICIPATE IN THE STUDY 1056 00:47:05,320 --> 00:47:07,289 THERE WERE NO SERIOUS ADVERSE 1057 00:47:07,289 --> 00:47:07,523 EVENTS. 1058 00:47:07,523 --> 00:47:11,827 NO PATIENT DISCONTINUED ON ANY 1059 00:47:11,827 --> 00:47:13,929 ARM OF THE THERAPY AND PATIENTS 1060 00:47:13,929 --> 00:47:15,230 WERE RESPONDING TO EACH OF THE 1061 00:47:15,230 --> 00:47:17,432 THREE TREATMENTS WHICH IS WHAT 1062 00:47:17,432 --> 00:47:18,767 WE WERE ANTICIPATING. 1063 00:47:18,767 --> 00:47:20,302 THIS IS EVIDENCE OF ONE OF OUR 1064 00:47:20,302 --> 00:47:22,671 GREATER COLLABORATIONS. 1065 00:47:22,671 --> 00:47:25,073 IT'S PAIRING BASIC SCIENCE WITH 1066 00:47:25,073 --> 00:47:27,209 CLINICAL MEDICINE AND PAIRING S, 1067 00:47:27,209 --> 00:47:28,610 SCIENTISTS, SELF-ADVOCATES AND 1068 00:47:28,610 --> 00:47:29,211 FAMILIES TOGETHER. 1069 00:47:29,211 --> 00:47:30,946 I INCLUDED OUR RESEARCH E-MAILS 1070 00:47:30,946 --> 00:47:32,881 IF YOU HAVE INDIVIDUALS 1071 00:47:32,881 --> 00:47:34,449 INTERESTED OR MIGHT MEET 1072 00:47:34,449 --> 00:47:35,517 CRITERIA AND I PUT MY PERSONAL 1073 00:47:35,517 --> 00:47:37,019 E-MAIL AT THE BOTTOM IF YOU HAVE 1074 00:47:37,019 --> 00:47:39,187 QUESTIONS BUT I APPRECIATE 1075 00:47:39,187 --> 00:47:42,090 YOU'RE TIME AND HAPPY TALK 1076 00:47:42,090 --> 00:47:50,098 AFTERWARDS ABOUT THE TRIAL. 1077 00:47:50,098 --> 00:48:00,642 I'D LIKE TO WILL COME OUR NEXT 1078 00:48:01,476 --> 00:48:11,553 SPEAKER. 1079 00:48:24,866 --> 00:48:26,335 MAYOR THEY'RE OUT OF ORDER. 1080 00:48:26,335 --> 00:48:26,635 DR. HEAD. 1081 00:48:26,635 --> 00:48:29,071 >> I'M GOING TO GO BEFORE MIKE 1082 00:48:29,071 --> 00:48:35,043 BECAUSE MIKE HAS TO HAVE THE FUN 1083 00:48:35,043 --> 00:48:36,178 ENDING TO THE CONVERSATION ABOUT 1084 00:48:36,178 --> 00:48:36,878 ALZHEIMER'S DISEASE. 1085 00:48:36,878 --> 00:48:39,881 I'LL TALK ABOUT THE LINK BETWEEN 1086 00:48:39,881 --> 00:48:40,749 DOWN SYNDROME AND ALZHEIMER'S 1087 00:48:40,749 --> 00:48:42,150 DISEASE SO WE'RE ALL ON THE SAME 1088 00:48:42,150 --> 00:48:42,451 PAGE. 1089 00:48:42,451 --> 00:48:47,022 I KNOW MANY KNOW ALREADY BUT 1090 00:48:47,022 --> 00:48:50,692 TRISOMY 21 IS THE MOST COMMON 1091 00:48:50,692 --> 00:48:51,994 CAUSE OF DOWN SYNDROME AND 1092 00:48:51,994 --> 00:48:56,965 THERE'S THE AMYLOID PRECURSOR 1093 00:48:56,965 --> 00:48:58,967 PROTEIN CLEAVED TO TAU PROTEIN 1094 00:48:58,967 --> 00:49:00,936 AN UNDERLYING PATHOLOGY IN 1095 00:49:00,936 --> 00:49:01,336 ALZHEIMER'S. 1096 00:49:01,336 --> 00:49:02,638 THAT MEANS PEOPLE WITH DOWN 1097 00:49:02,638 --> 00:49:04,339 SYNDROME SHOW AN EARLY AGE OF 1098 00:49:04,339 --> 00:49:06,875 ONSET OF THIS BETA AMYLOID 1099 00:49:06,875 --> 00:49:10,712 PROTEIN AND IT'S VERY AGE 1100 00:49:10,712 --> 00:49:10,979 DEPENDENT. 1101 00:49:10,979 --> 00:49:12,314 IN OTHER WORDS, BASED ON THE AGE 1102 00:49:12,314 --> 00:49:13,715 OF A PERSON WITH DOWN SYNDROME 1103 00:49:13,715 --> 00:49:17,119 WE CAN PREDICT PRETTY WELL HOW 1104 00:49:17,119 --> 00:49:19,254 MUCH BETA AMYLOID THEY HAVE IN 1105 00:49:19,254 --> 00:49:20,956 THEIR IT BRAINS BY 40 A PERSON 1106 00:49:20,956 --> 00:49:21,990 WILL HAVE NEURAL PATHOLOGY IN 1107 00:49:21,990 --> 00:49:23,525 THEIR BRAINS. 1108 00:49:23,525 --> 00:49:25,360 IT DOES NOT MEAN THEY HAVE 1109 00:49:25,360 --> 00:49:25,794 DEMENTIA. 1110 00:49:25,794 --> 00:49:29,064 THESE ARE CLEAR AND DISTINCT. 1111 00:49:29,064 --> 00:49:30,465 AND IT ALSO TELLS US DOWN 1112 00:49:30,465 --> 00:49:33,001 SYNDROME IS THE MOST COMMON FORM 1113 00:49:33,001 --> 00:49:35,504 OF GENETIC ALZHEIMERS DISEASE. 1114 00:49:35,504 --> 00:49:37,606 WE HAVE OVER 250,000 PEOPLE WITH 1115 00:49:37,606 --> 00:49:39,307 DOWN SYNDROME IN THE U.S. AND 1116 00:49:39,307 --> 00:49:40,642 ESTIMATE OVER 6 MILLION PEOPLE 1117 00:49:40,642 --> 00:49:43,178 AROUND THE WORLD AT HIGH RISK 1118 00:49:43,178 --> 00:49:44,613 FOR DEVELOPING ALZHEIMER'S 1119 00:49:44,613 --> 00:49:44,913 DISEASE. 1120 00:49:44,913 --> 00:49:48,116 GOOD NEWS IS THAT PEOPLE WITH 1121 00:49:48,116 --> 00:49:50,252 DOWN SYNDROME ARE LIVING LONGER. 1122 00:49:50,252 --> 00:49:52,120 WE SAW SOME STATISTICS YESTERDAY 1123 00:49:52,120 --> 00:49:55,657 AND THE MOST RAPIDLY GROWING AGE 1124 00:49:55,657 --> 00:49:56,792 COHORT ARE AGES BETWEEN 40 AND 1125 00:49:56,792 --> 00:49:57,092 50 YEARS. 1126 00:49:57,092 --> 00:50:01,196 THAT'S THE TIME WHERE WE SEE 1127 00:50:01,196 --> 00:50:06,034 FULL A.D. PATHOLOGY IN TEAM'S 1128 00:50:06,034 --> 00:50:06,268 BRAINS. 1129 00:50:06,268 --> 00:50:09,171 THE AGE OF ONSET OF A PERSON 1130 00:50:09,171 --> 00:50:10,439 WITH DEMENTIA IS BETWEEN 50 AND 1131 00:50:10,439 --> 00:50:11,540 55 YEARS. 1132 00:50:11,540 --> 00:50:14,009 THIS IS REMARKABLY CONSISTENT 1133 00:50:14,009 --> 00:50:15,177 ACROSS COHORTS INTERNATIONALLY 1134 00:50:15,177 --> 00:50:16,144 AND NATIONALLY. 1135 00:50:16,144 --> 00:50:17,846 AND THE AVERAGE AGE OF DEATH FOR 1136 00:50:17,846 --> 00:50:21,416 A PERSONAL WOULD BE ABOUT 58.4 1137 00:50:21,416 --> 00:50:22,384 YEARS OF AGE. 1138 00:50:22,384 --> 00:50:25,387 THIS IS A VERY RAPID DISEASE 1139 00:50:25,387 --> 00:50:27,656 PROCESS APPROXIMATELY UNDER FIVE 1140 00:50:27,656 --> 00:50:29,391 YEARS DIAGNOSIS TO WHEN THAT 1141 00:50:29,391 --> 00:50:30,659 PERSON MAY PASS AWAY. 1142 00:50:30,659 --> 00:50:32,060 THE NEWS ISN'T ALL BAD. 1143 00:50:32,060 --> 00:50:35,197 WE NEED TO KNOW THE STATISTICS. 1144 00:50:35,197 --> 00:50:36,898 I WANT YOU ALL TO UNDERSTAND HOW 1145 00:50:36,898 --> 00:50:38,567 URGENT WE THINK THE PROBLEM IS 1146 00:50:38,567 --> 00:50:41,103 AND SEEING SOME PEOPLE WITH DOWN 1147 00:50:41,103 --> 00:50:44,005 SYNDROME WITH FULL TRISOMY 21 1148 00:50:44,005 --> 00:50:47,008 GETTING IN THEIR 60s AND 70s 1149 00:50:47,008 --> 00:50:51,847 WITH FULL BLOWN A.D. PATHOLOGY 1150 00:50:51,847 --> 00:50:55,951 IN THEIR BRAINS BUT NOT SEEING 1151 00:50:55,951 --> 00:50:58,386 DECOGNITION AND WE'RE 1152 00:50:58,386 --> 00:50:59,788 INFORMATION RESILIENCE TO 1153 00:50:59,788 --> 00:51:00,222 ALZHEIMER'S DISEASE. 1154 00:51:00,222 --> 00:51:01,389 I'M LEARNING THIS FROM PEOPLE 1155 00:51:01,389 --> 00:51:08,196 WITH DOWN SYNDROME. 1156 00:51:08,196 --> 00:51:11,867 ADDITIONAL STATISTICS ARE PEOPLE 1157 00:51:11,867 --> 00:51:13,034 WITH DOWN SYNDROME WHO ARE WHITE 1158 00:51:13,034 --> 00:51:14,669 ARE MOST REPRESENTED IN OUR 1159 00:51:14,669 --> 00:51:16,004 RESEARCH BECAUSE THEY'RE LIVING 1160 00:51:16,004 --> 00:51:24,112 LONGEST. 1161 00:51:24,112 --> 00:51:25,147 WE'RE STUMBLING TO RECRUIT 1162 00:51:25,147 --> 00:51:26,414 PEOPLE WHO ARE BLACK BECAUSE 1163 00:51:26,414 --> 00:51:29,384 THEIR LIVES ARE SHORTER AND 1164 00:51:29,384 --> 00:51:30,952 OTHER ETHNICITY AND RACES ARE 1165 00:51:30,952 --> 00:51:32,220 AFFECTED IN TERMS OF LIFE SPAN. 1166 00:51:32,220 --> 00:51:37,893 IT'S NOT BIOLOGICAL. 1167 00:51:37,893 --> 00:51:48,403 IT'S A HEALTH DISPARITY ISSUE. 1168 00:52:03,885 --> 00:52:05,520 WE NEED TO EXTEND LIFE. 1169 00:52:05,520 --> 00:52:16,064 OUR TRACK RECORD ISN'T IS GREAT. 1170 00:52:17,699 --> 00:52:19,901 OF ALL THE CLINICAL TRIALS LOOK 1171 00:52:19,901 --> 00:52:21,903 AT TREATING DEMENTIA IS BASED ON 1172 00:52:21,903 --> 00:52:23,872 SMALL COHORT SIZES WITH LIMITED 1173 00:52:23,872 --> 00:52:26,575 OUTCOMES AND SO FAR THERE'S NO 1174 00:52:26,575 --> 00:52:29,177 EVIDENCE ANY OF THE CURRENTLY 1175 00:52:29,177 --> 00:52:30,979 AVAILABLE DRUGS TO TREAT 1176 00:52:30,979 --> 00:52:33,415 ALZHEIMER'S DISEASE LOOK FOR 1177 00:52:33,415 --> 00:52:38,253 PEOPLE WITH DOWN SYNDROME. 1178 00:52:38,253 --> 00:52:40,055 IT DOESN'T MEAN WE SHOULDN'T BE 1179 00:52:40,055 --> 00:52:41,690 TRYING MEDICATION. 1180 00:52:41,690 --> 00:52:43,792 THEY DO WORK FOR SOME PEOPLE BUT 1181 00:52:43,792 --> 00:52:45,427 THE EVIDENCE IS WE NEED TO DO 1182 00:52:45,427 --> 00:52:52,901 BETTER. 1183 00:52:52,901 --> 00:52:55,136 PEOPLE WITH DOWN SYNDROME ARE 1184 00:52:55,136 --> 00:52:57,472 SPECIFICALLY EXCLUDED IN 1185 00:52:57,472 --> 00:52:58,540 CLINICAL TRIALS FOR ALZHEIMER'S 1186 00:52:58,540 --> 00:52:59,608 DISEASE AND THAT'S A LITTLE BIT 1187 00:52:59,608 --> 00:53:05,113 OF A HEARTBREAK AND DRA RAFII 1188 00:53:05,113 --> 00:53:06,848 WILL TALK NEXT ABOUT BUILDING 1189 00:53:06,848 --> 00:53:07,949 THESE TRIALS FOR PEOPLE WITH 1190 00:53:07,949 --> 00:53:08,283 DOWN SYNDROME. 1191 00:53:08,283 --> 00:53:10,085 WE NEED TO UNDERSTAND WHAT THE 1192 00:53:10,085 --> 00:53:11,486 NATURAL HISTORY OF COGNITIVE 1193 00:53:11,486 --> 00:53:12,354 CHANGES IN PEOPLE WITH DOWN 1194 00:53:12,354 --> 00:53:12,787 SYNDROME. 1195 00:53:12,787 --> 00:53:14,055 WE ALSO NEED TO UNDERSTAND WHAT 1196 00:53:14,055 --> 00:53:19,294 ARE ALL THE BIOMARKERS THAT WE 1197 00:53:19,294 --> 00:53:23,732 CAN USE TO PREDICT WHEN AND IF A 1198 00:53:23,732 --> 00:53:24,466 PERSON WILL COME DOWN WIN 1199 00:53:24,466 --> 00:53:26,601 COGNITIVE DEMENTIA AND WE 1200 00:53:26,601 --> 00:53:29,404 COLLECT LOTS OF BIO SAMPLES AND 1201 00:53:29,404 --> 00:53:32,407 COLLECT BIO IMAGING. 1202 00:53:32,407 --> 00:53:34,009 THERE'S THREE WONDERFUL COHORT 1203 00:53:34,009 --> 00:53:36,077 STUDIES AND THEY EXCHANGE 1204 00:53:36,077 --> 00:53:37,379 INFORMATION SO THIS WHOLE EFFORT 1205 00:53:37,379 --> 00:53:38,947 IS INTERNATIONAL. 1206 00:53:38,947 --> 00:53:41,917 THERE'S A GROUP IN BARCELONA, 1207 00:53:41,917 --> 00:53:43,084 SPAIN FOLLOWING A COHORT OF 1208 00:53:43,084 --> 00:53:45,420 PEOPLE WITH DOWN SYNDROME AS 1209 00:53:45,420 --> 00:53:46,922 THEY AGE. 1210 00:53:46,922 --> 00:53:51,493 AND THERE'S A COHORT IN LONDON 1211 00:53:51,493 --> 00:53:53,428 IN THE UNITED KINGDOM AND 1212 00:53:53,428 --> 00:53:57,299 HIGHLIGHT OUR WORK BY THE 1213 00:53:57,299 --> 00:54:00,135 ALZHEIMER'S BIOMEDICAL 1214 00:54:00,135 --> 00:54:10,512 CONSORTIUM IN THE U.S. 1215 00:54:17,986 --> 00:54:19,621 AND THERE'S PEOPLE HERE ALWAYS 1216 00:54:19,621 --> 00:54:21,022 ON OUR CALL AND WE HAVE A 1217 00:54:21,022 --> 00:54:23,792 PROGRAM OFFICER AND THERE'S THE 1218 00:54:23,792 --> 00:54:28,029 WEBSITE IF YOU GOOGLE NIH ABCDS 1219 00:54:28,029 --> 00:54:33,134 YOU'LL FIND US. 1220 00:54:33,134 --> 00:54:35,837 WE RECRUIT PEOPLE 25 YEARS AND 1221 00:54:35,837 --> 00:54:38,106 OLDER AND SPEAK TO THEM EVERY 16 1222 00:54:38,106 --> 00:54:39,708 MONTHS AND ASSESS NEURAL 1223 00:54:39,708 --> 00:54:40,842 PSYCHOLOGICAL FUNCTION AND GET 1224 00:54:40,842 --> 00:54:45,914 AN ASSESSMENT OF NEUROLOGICAL 1225 00:54:45,914 --> 00:54:51,186 AND MEDICAL ISSUES AND CAPTURE 1226 00:54:51,186 --> 00:54:56,591 IMAGING FOR AMYLOID AND TAU AND 1227 00:54:56,591 --> 00:54:58,626 GLUCOSE UTILIZATION AND COLLECT 1228 00:54:58,626 --> 00:55:00,695 PLASMA FOR FLUID BIOMARKER 1229 00:55:00,695 --> 00:55:02,564 STUDIES AND SOME ARE WILLING TO 1230 00:55:02,564 --> 00:55:04,833 DO LUMBAR PUNCTURE BUT I SUSPECT 1231 00:55:04,833 --> 00:55:06,968 WE'LL DRIFT AWAY FROM THAT IN 1232 00:55:06,968 --> 00:55:10,038 THE FUTURE BECAUSE OUR PLASMA 1233 00:55:10,038 --> 00:55:13,475 PROTEIN LEVELS ARE GETTING GOOD 1234 00:55:13,475 --> 00:55:15,410 AND WE'RE PRETTY CONFIDENT WE 1235 00:55:15,410 --> 00:55:17,412 NEURO PSYCHOLOGICAL OUTCOME 1236 00:55:17,412 --> 00:55:20,915 MEASURES TO TELL US ABOUT 1237 00:55:20,915 --> 00:55:21,549 DIAGNOSTIC AND HELP DIAGNOSE 1238 00:55:21,549 --> 00:55:22,751 PEOPLE AND SERVE AS OUTCOME 1239 00:55:22,751 --> 00:55:24,052 MEASURES FOR CLINICAL TRIALS. 1240 00:55:24,052 --> 00:55:25,420 THAT'S THE INFORMATION WE SHARED 1241 00:55:25,420 --> 00:55:27,589 WITH THE COMMUNITY. 1242 00:55:27,589 --> 00:55:29,924 AND WE'VE ALSO BEEN REALLY 1243 00:55:29,924 --> 00:55:35,130 ENCOURAGING PEOPLE IN ABC-DS TO 1244 00:55:35,130 --> 00:55:40,035 ENROLL TO TRACK DS DR. RAFII 1245 00:55:40,035 --> 00:55:44,973 WILL TELL YOU MORE ABOUT AND GO 1246 00:55:44,973 --> 00:55:46,941 INTO CLINICAL TRIALS BASED ON 1247 00:55:46,941 --> 00:55:47,776 PARTICIPATING IN OUR STUDY. 1248 00:55:47,776 --> 00:55:49,411 WE'RE TRYING TO PUT THE DATA 1249 00:55:49,411 --> 00:55:51,246 TOGETHER AND IMAGING AND PLASMA 1250 00:55:51,246 --> 00:55:54,916 DATA INTO A FRAMEWORK THAT IS 1251 00:55:54,916 --> 00:55:56,451 COMMONLY DESCRIBED AS THE JAK 1252 00:55:56,451 --> 00:55:58,920 CURVE THAT DESCRIBES HOW BETA 1253 00:55:58,920 --> 00:56:01,689 AMYLOID ENTANGLE PATHOLOGY 1254 00:56:01,689 --> 00:56:03,158 EVOLVE AS THE DISEASE PROGRESS. 1255 00:56:03,158 --> 00:56:05,393 ON THE X AXIS YOU SEE CLINICAL 1256 00:56:05,393 --> 00:56:05,994 DISEASE STAGE. 1257 00:56:05,994 --> 00:56:07,829 THEY PROGRESS FROM BEING 1258 00:56:07,829 --> 00:56:10,331 NON-IMPAIRED TO MILD IMPAIRMENT 1259 00:56:10,331 --> 00:56:13,935 TO OVERT DEMENTIA AND THIS SHOWS 1260 00:56:13,935 --> 00:56:15,970 BETA AMYLOID SHOWS UP FIRST AS 1261 00:56:15,970 --> 00:56:17,405 AN EARLY BIOMARKER AND THEN 1262 00:56:17,405 --> 00:56:21,910 EVIDENCE FOR TAU PATHOLOGY AND 1263 00:56:21,910 --> 00:56:24,913 THEN EVIDENCE FOR NEURO 1264 00:56:24,913 --> 00:56:28,049 DEGENERATION BY MRI AND SEEING 1265 00:56:28,049 --> 00:56:33,154 THE BRAIN SHRINK AND FULL BLOWN 1266 00:56:33,154 --> 00:56:36,124 DEMENTIA EVOLVES LATER. 1267 00:56:36,124 --> 00:56:38,460 IN DOWN SYNDROME WE HAVE AN 1268 00:56:38,460 --> 00:56:41,963 OPPORTUNITY WE CAN PUT AGE AND 1269 00:56:41,963 --> 00:56:45,400 SAY AT DIFFERENT AGES WE CAN 1270 00:56:45,400 --> 00:56:48,837 PREDICT WHAT KINDS OF PATHOLOGY 1271 00:56:48,837 --> 00:56:50,772 ARE PRESENT AND SAY AT A CERTAIN 1272 00:56:50,772 --> 00:56:52,774 AGE THIS IS THE TARGET WE SHOULD 1273 00:56:52,774 --> 00:56:54,109 GO AFTER IN TERMS OF 1274 00:56:54,109 --> 00:56:54,442 INTERVENTION. 1275 00:56:54,442 --> 00:56:58,079 AT A DIFFERENT AGE, WE MAY BE 1276 00:56:58,079 --> 00:57:00,215 TARGETING TWO PATHOLOGIES OR 1277 00:57:00,215 --> 00:57:00,482 THREE. 1278 00:57:00,482 --> 00:57:03,051 THAT EMPOWERS US IN CLINICAL 1279 00:57:03,051 --> 00:57:04,486 TRIAL DESIGN AND GIVES AN 1280 00:57:04,486 --> 00:57:06,187 OPPORTUNITY TO MAKE SURE WE'RE 1281 00:57:06,187 --> 00:57:07,722 WITHIN CERTAIN SAFETY WINDOWS. 1282 00:57:07,722 --> 00:57:09,591 I'LL TELL YOU WHY I THINK THAT'S 1283 00:57:09,591 --> 00:57:09,858 IMPORTANT. 1284 00:57:09,858 --> 00:57:11,726 SOME CLINICAL TRIALS WE MAY BE 1285 00:57:11,726 --> 00:57:15,563 CONSIDERING LIKE BETA AMYLOID 1286 00:57:15,563 --> 00:57:17,031 IMMUNOTHERAPY HAVE SOME ADVERSE 1287 00:57:17,031 --> 00:57:20,101 EVENTS AND MAYBE WE CAN 1288 00:57:20,101 --> 00:57:21,436 UNDERSTAND WHEN WE MIGHT EXPECT 1289 00:57:21,436 --> 00:57:23,671 OR PREDICT THOSE IN PEOPLE WITH 1290 00:57:23,671 --> 00:57:24,439 DOWN SYNDROME AND AVOID THAT 1291 00:57:24,439 --> 00:57:25,673 BASED ON THE AGE OF THE PERSON. 1292 00:57:25,673 --> 00:57:28,109 HERE'S THE ONE EXAMPLE I'LL 1293 00:57:28,109 --> 00:57:37,719 GIVE. 1294 00:57:37,719 --> 00:57:40,922 LET'S TALK ABOUT VASCULAR 1295 00:57:40,922 --> 00:57:42,157 PATHOLOGY IN PEOPLE WITH DOWN 1296 00:57:42,157 --> 00:57:43,591 SYNDROME AND THEY'RE TYPICALLY 1297 00:57:43,591 --> 00:57:45,160 PROTECTED FROM A LOT OF RISK 1298 00:57:45,160 --> 00:57:45,426 FACTORS. 1299 00:57:45,426 --> 00:57:47,595 THEY DON'T DEVELOP 1300 00:57:47,595 --> 00:57:49,297 ATHEROSCLEROSIS FREQUENTLY. 1301 00:57:49,297 --> 00:57:53,001 THEY HAVE LITTLE HYPERTENSION 1302 00:57:53,001 --> 00:57:55,537 AND THERE WAYS POSTER ON THAT 1303 00:57:55,537 --> 00:58:00,341 YESTERDAY AND STILL UPSTAIRS. 1304 00:58:00,341 --> 00:58:03,611 ON THE OTHER HAND WE DO HAVE 1305 00:58:03,611 --> 00:58:06,881 FACTOR DO DRIVE FACTORS 1306 00:58:06,881 --> 00:58:09,317 INCLUDING OBESITY, BEING 1307 00:58:09,317 --> 00:58:13,454 OVERWEIGHT AND SLEEP APNEA AND 1308 00:58:13,454 --> 00:58:14,389 CAN REDUCE RISK FOR ALZHEIMER'S 1309 00:58:14,389 --> 00:58:17,292 IN THE LONG RUN AND WE'RE SEEING 1310 00:58:17,292 --> 00:58:22,430 BETA AMYLOID ACCUMULATE AROUND 1311 00:58:22,430 --> 00:58:23,398 THE BLOOD VESSELS IN THE BRAIN 1312 00:58:23,398 --> 00:58:31,472 AND THIS IS WHAT THEY LOOK LIKE. 1313 00:58:31,472 --> 00:58:36,211 THE BETA AMYLOID YOU CAN SEE THE 1314 00:58:36,211 --> 00:58:39,047 BIG BROWN BLOBS ARE PLAQUES AND 1315 00:58:39,047 --> 00:58:40,114 THE SQUIGGLES ARE CAKED WITH 1316 00:58:40,114 --> 00:58:42,016 THIS PROTEIN. 1317 00:58:42,016 --> 00:58:49,691 THEY CAN'T CONSTRICT AND DILATE 1318 00:58:49,691 --> 00:58:55,230 PROPERLY AND BECOME BUILT ER 1319 00:58:55,230 --> 00:58:57,665 BRITTLE AND MAY BREAK AND WE SEE 1320 00:58:57,665 --> 00:58:59,067 A LOT OF THIS PATHOLOGY AFTER 1321 00:58:59,067 --> 00:59:02,370 PEOPLE ARE 50 YEARS OF AGE OR 1322 00:59:02,370 --> 00:59:03,071 OLDER. 1323 00:59:03,071 --> 00:59:08,643 AND ASSOCIATED WITH THAT IS 1324 00:59:08,643 --> 00:59:11,045 MICROBLEEDS IN THE BRAIN BECAUSE 1325 00:59:11,045 --> 00:59:12,880 THEY'RE PATHOLOGICAL. 1326 00:59:12,880 --> 00:59:14,849 WE SEE LOTS OF THE MICROBLEEDS 1327 00:59:14,849 --> 00:59:16,084 IN THE BRAIN OF PEOPLE WITH DOWN 1328 00:59:16,084 --> 00:59:17,418 SYNDROME BUT IT'S NOT MORE 1329 00:59:17,418 --> 00:59:21,122 EXTENSIVE THAN WHAT WE SEE IN 1330 00:59:21,122 --> 00:59:24,993 SPORADIC ALZHEIMER'S DISEASE. 1331 00:59:24,993 --> 00:59:26,094 WE'RE TRANSLATE THESE AND THAT'S 1332 00:59:26,094 --> 00:59:36,571 ONE THING THAT MAY BE GOOD. 1333 00:59:39,974 --> 00:59:46,581 WE HAVE AMYLOID RELATED MYELOID 1334 00:59:46,581 --> 00:59:49,417 ABNORMALITIES TO SO PEOPLE WITH 1335 00:59:49,417 --> 00:59:51,452 A LOT OF BLEEDS IN THEIR BRAINS 1336 00:59:51,452 --> 00:59:55,223 MAY SHOW I'D SIDE EFFECTS. 1337 00:59:55,223 --> 00:59:57,358 1338 01:00:04,565 --> 01:00:06,501 WE CAN AVOID THAT AS A POSSIBLE 1339 01:00:06,501 --> 01:00:17,011 SIDE EFFECT BY GOING YOUNGER. 1340 01:00:44,806 --> 01:00:46,741 I WANTED TO THANK OUR VOLUNTEERS 1341 01:00:46,741 --> 01:00:47,308 WITH DOWN SYNDROME. 1342 01:00:47,308 --> 01:00:48,076 BEING INVOLVED IN THE RESEARCH 1343 01:00:48,076 --> 01:00:52,980 IS A JOY AND INSPIRATION. 1344 01:00:52,980 --> 01:00:56,951 I WANT TO THANK MY LAB DOING THE 1345 01:00:56,951 --> 01:00:59,253 HANDS ON WORK UNDERSTANDING THE 1346 01:00:59,253 --> 01:01:01,789 PATHOLOGIES AND I'LL LEAVE OUR 1347 01:01:01,789 --> 01:01:02,790 WEBSITE UP HERE FOR YOU TO LOOK 1348 01:01:02,790 --> 01:01:04,158 AT. 1349 01:01:04,158 --> 01:01:09,330 THANK YOU VERY MUCH. 1350 01:01:09,330 --> 01:01:12,367 >> I'LL INTRODUCE OUR LAST 1351 01:01:12,367 --> 01:01:16,170 SPEAKER DR. RAFII TALKING ABOUT 1352 01:01:16,170 --> 01:01:17,171 CLINICAL TRIALS TARGETING AD IN 1353 01:01:17,171 --> 01:01:27,415 DOWN SYNDROME. 1354 01:01:51,939 --> 01:01:57,545 >> THESE ARE MY DISCLOSURES. 1355 01:01:57,545 --> 01:02:00,681 WHERE HE WERE FUNDED BY THE R61, 1356 01:02:00,681 --> 01:02:05,553 R33 MECHANISM TO LEVERAGE THE 1357 01:02:05,553 --> 01:02:10,358 ACTC, ALZHEIMER'S CLINICAL TRIAL 1358 01:02:10,358 --> 01:02:13,461 CONSORTIUM FOR ALZHEIMER'S 1359 01:02:13,461 --> 01:02:18,699 DISEASE AND HAVE STUDIES 1360 01:02:18,699 --> 01:02:20,034 SPECIFICALLY DESIGN FOR DOWN 1361 01:02:20,034 --> 01:02:20,902 SYNDROME. 1362 01:02:20,902 --> 01:02:25,006 WE WANTED TO HAVE A TRIAL-READY 1363 01:02:25,006 --> 01:02:27,275 COHORT TO FACILITATE EFFICIENT 1364 01:02:27,275 --> 01:02:28,576 ENROLLMENT AND MAKE SURE THEY'RE 1365 01:02:28,576 --> 01:02:30,978 MEDICALLY STABLE AND WOULDN'T BE 1366 01:02:30,978 --> 01:02:31,779 EXCLUDED FROM THE CRITERIA WE 1367 01:02:31,779 --> 01:02:33,414 HAVE FOR OUR TRIALS. 1368 01:02:33,414 --> 01:02:39,654 WE WERE PLANNING TO ENROLL 120 1369 01:02:39,654 --> 01:02:40,488 NON-DEPAR 1370 01:02:40,488 --> 01:02:42,256 NON-DEMENTED ADULTS AND CONDUCT 1371 01:02:42,256 --> 01:02:44,559 A RANDOMIZED CLINICAL TRIAL OF 1372 01:02:44,559 --> 01:02:46,627 AN ANTI-AMYLOID THERAPY. 1373 01:02:46,627 --> 01:02:48,196 WE'VE HAD SOME CHALLENGES. 1374 01:02:48,196 --> 01:02:53,701 WE WERE FUNDED PRIOR TO THE 1375 01:02:53,701 --> 01:02:56,070 COVID-19 COVID PANDEMIC AND 1376 01:02:56,070 --> 01:03:00,475 WORKED WITH A DRUG WITH OVER A 1377 01:03:00,475 --> 01:03:03,311 DECADE OF DATA SAFETY BEHIND IT 1378 01:03:03,311 --> 01:03:05,146 AND WAS AMENABLE FOR THE 1379 01:03:05,146 --> 01:03:06,848 POPULATION BUT THE DRUG HAD 1380 01:03:06,848 --> 01:03:08,983 NEGATIVE PHASE III RESULTS. 1381 01:03:08,983 --> 01:03:11,519 AND ALSO WE FACED SIGNIFICANT 1382 01:03:11,519 --> 01:03:12,553 DELAYS WORKING WEDGE OUR 1383 01:03:12,553 --> 01:03:13,921 EUROPEAN PARTNERS. 1384 01:03:13,921 --> 01:03:15,790 THIS IS OUR WORLDWIDE EFFORT TO 1385 01:03:15,790 --> 01:03:16,624 BRING TREATMENT TO THE 1386 01:03:16,624 --> 01:03:17,158 POPULATION THAT HAS BEEN 1387 01:03:17,158 --> 01:03:24,065 EXCLUDED FOR SO LONG. 1388 01:03:24,065 --> 01:03:27,735 BUT WE'VE HAD SUCCESSES WITH 1389 01:03:27,735 --> 01:03:32,707 ENROLLMENT WITH ABC-DS AND TRACK 1390 01:03:32,707 --> 01:03:34,442 DS NOW EXISTS AND THERE'S A 1391 01:03:34,442 --> 01:03:36,010 NETWORK AND COMPANIES AND 1392 01:03:36,010 --> 01:03:37,311 INDUSTRY ARE PARTNERING WITH US 1393 01:03:37,311 --> 01:03:37,812 TO BRING SOME OF THEIR 1394 01:03:37,812 --> 01:03:40,114 TREATMENTS TO THIS POPULATION. 1395 01:03:40,114 --> 01:03:41,816 THIS IS THE NETWORK. 1396 01:03:41,816 --> 01:03:43,417 WE HAVE ABOUT 20 SITES AROUND 1397 01:03:43,417 --> 01:03:46,554 THE WORLD, 14 IN THE U.S., SIX 1398 01:03:46,554 --> 01:03:48,789 IN EUROPE AND USING A HARMONIZED 1399 01:03:48,789 --> 01:03:50,892 PROTOCOL AND ICF TRANSLATED TO 1400 01:03:50,892 --> 01:03:53,761 SEVERAL LANGUAGES. 1401 01:03:53,761 --> 01:03:56,330 THE TRIAL READY COHORT IS NOW 1402 01:03:56,330 --> 01:03:57,832 CLOSE TO 250 PARTICIPANTS. 1403 01:03:57,832 --> 01:04:02,436 AND RECRUITS FROM THE NIH 1404 01:04:02,436 --> 01:04:04,138 CONNECT REGISTRY, DIRECT 1405 01:04:04,138 --> 01:04:05,139 RECRUITMENT AT OUR SITES AND 1406 01:04:05,139 --> 01:04:10,011 ALSO IMPORTANTLY, CO-ENROLLMENT 1407 01:04:10,011 --> 01:04:13,381 WITH ABC-DS. 1408 01:04:13,381 --> 01:04:14,615 THE IDEA IS PARTICIPANTS AT THE 1409 01:04:14,615 --> 01:04:15,983 SITES WOULD BE OFFERED ONE OF 1410 01:04:15,983 --> 01:04:17,418 SEVERAL CLINICAL TRIALS THEY MAY 1411 01:04:17,418 --> 01:04:19,620 BE ELIGIBLE FOR AT THE 1412 01:04:19,620 --> 01:04:20,755 COMPLETION OF THOSE TRIALS, THEY 1413 01:04:20,755 --> 01:04:22,790 WOULD BE ABLE TO RE-ENTER BACK 1414 01:04:22,790 --> 01:04:27,028 TOO THE TRIAL-READY COHORT. 1415 01:04:27,028 --> 01:04:31,198 AS WE THINK ABOUT THE ABC-DS 1416 01:04:31,198 --> 01:04:32,333 DATA AND UNDERSTANDING THE 1417 01:04:32,333 --> 01:04:33,167 NATURAL HISTORY OF ALZHEIMER'S 1418 01:04:33,167 --> 01:04:36,837 DISEASE WE'VE BEEN ABLE TO PLACE 1419 01:04:36,837 --> 01:04:39,307 INDIVIDUALS WITH DOWN SYNDROME 1420 01:04:39,307 --> 01:04:43,411 ON THE AD CONTINUUM AND THE 1421 01:04:43,411 --> 01:04:45,413 CONTINUUM HAS BEEN MOVING 1422 01:04:45,413 --> 01:04:49,517 TOWARDS THE EARLIER STAGES OF 1423 01:04:49,517 --> 01:04:50,651 ALZHEIMER'S DISEASE THE 1424 01:04:50,651 --> 01:04:53,487 PRECLINICAL A.D. STAGE TO 1425 01:04:53,487 --> 01:04:55,523 IDENTIFY INDIVIDUALS 1426 01:04:55,523 --> 01:04:58,225 ASYMPTOMATIC BUT HARBOR THE 1427 01:04:58,225 --> 01:04:59,093 PATHOLOGY OF ALZHEIMER'S DISEASE 1428 01:04:59,093 --> 01:05:04,865 WE REFER TO AS SECONDARY P 1429 01:05:04,865 --> 01:05:05,499 PREVEN 1430 01:05:05,499 --> 01:05:05,800 PREVENTION. 1431 01:05:05,800 --> 01:05:07,401 WE MAYBE ABLE IT DO THE SAME IN 1432 01:05:07,401 --> 01:05:08,135 THE GENETIC POPULATION. 1433 01:05:08,135 --> 01:05:09,837 THINK OF CLINICAL TRIALS AND 1434 01:05:09,837 --> 01:05:10,838 UTILIZING THE VAST AMOUNT OF 1435 01:05:10,838 --> 01:05:14,408 DATA BEING COLLECTED IN ABC-DS 1436 01:05:14,408 --> 01:05:15,943 WE'VE HAD LEARNINGS. 1437 01:05:15,943 --> 01:05:18,646 ONE IS THOUGH THERE'S A 1438 01:05:18,646 --> 01:05:19,947 PREDILECTION TO AMYLOID 1439 01:05:19,947 --> 01:05:22,917 POSITIVITY, THERE'S A UNIQUE 1440 01:05:22,917 --> 01:05:23,184 PATTERN. 1441 01:05:23,184 --> 01:05:25,052 HERE ON THE X AXIS YOU SEE THE 1442 01:05:25,052 --> 01:05:26,187 DIFFERENT AGE RANGES IN 1443 01:05:26,187 --> 01:05:29,423 PARTICIPANTS IN ABC-DS AND ON 1444 01:05:29,423 --> 01:05:33,160 THE Y OF INDIVIDUALS AMYLOID 1445 01:05:33,160 --> 01:05:36,697 POSITIVE ON PET USING THREE 1446 01:05:36,697 --> 01:05:37,732 THRESHOLDS ON POSITIVITY. 1447 01:05:37,732 --> 01:05:40,701 YOU'LL SEE BETWEEN THE AGES OF 1448 01:05:40,701 --> 01:05:43,371 40 AND 45 ABOUT 60% OF 1449 01:05:43,371 --> 01:05:46,073 INDIVIDUALS WOULD BE AMYLOID PET 1450 01:05:46,073 --> 01:05:50,645 POSITIVE USING THE THRESHOLD OF 1451 01:05:50,645 --> 01:05:50,911 20. 1452 01:05:50,911 --> 01:05:53,381 IF YOU LOOK AT THOSE YOU HAVE 1453 01:05:53,381 --> 01:05:56,484 ABOUT 40% PET POSITIVE. 1454 01:05:56,484 --> 01:05:59,186 BETWEEN 55 AND 60, THIS 1455 01:05:59,186 --> 01:06:00,921 PERCENTAGE INCREASES SO IT'S 1456 01:06:00,921 --> 01:06:03,324 WELL OVER 90% WOULD IN AMYLOID 1457 01:06:03,324 --> 01:06:06,560 PET POSITIVE. 1458 01:06:06,560 --> 01:06:08,696 LOOK AT THOSE UNDER THE AGE OF 1459 01:06:08,696 --> 01:06:19,240 40, LESS THAN 5% THAT WOULD BE 1460 01:06:21,008 --> 01:06:22,777 CRITICAL IN IDENTIFYING THOSE 1461 01:06:22,777 --> 01:06:24,211 FOR OUR TRIALS. 1462 01:06:24,211 --> 01:06:27,381 WE'D WANT TO MAKE SURE WE THINK 1463 01:06:27,381 --> 01:06:29,183 ABOUT PRESCREENING METHODS SO 1464 01:06:29,183 --> 01:06:31,352 WE'RE ABLE TO IDENTIFY THE FEW 1465 01:06:31,352 --> 01:06:33,054 INDIVIDUALS UNDER 40 WHO MAY 1466 01:06:33,054 --> 01:06:35,856 HAVE LESS MICROBLEEDS AND LESS 1467 01:06:35,856 --> 01:06:36,924 CO-EXISTING CONDITIONS THAT MAY 1468 01:06:36,924 --> 01:06:39,827 BE SAFETY COMPOUNDS AND TREAT 1469 01:06:39,827 --> 01:06:40,361 THEM SAFELY WITH THE 1470 01:06:40,361 --> 01:06:50,805 IMMUNOTHERAPIES AVAILABLE. 1471 01:06:55,142 --> 01:07:01,482 THE Y AXIS IS CLINICAL DIAGNOSES 1472 01:07:01,482 --> 01:07:05,486 AND THE BLUE IS COGNITIVELY 1473 01:07:05,486 --> 01:07:08,089 STABLE AND THE GRAY IS DEMENTIA. 1474 01:07:08,089 --> 01:07:18,599 THE DASHED VERTICAL LINE AND 1475 01:07:24,305 --> 01:07:26,073 LOOK AT THE BLUE LINE THE VAST 1476 01:07:26,073 --> 01:07:30,277 MAJORITY OF INDIVIDUALS UNDER 40 1477 01:07:30,277 --> 01:07:33,047 ARE COGNITIVELY STABLE 1478 01:07:33,047 --> 01:07:34,281 PERFORMING QUITE WELL AND OVER 1479 01:07:34,281 --> 01:07:44,825 45 YOU SEE THE PROPORTION DROPS. 1480 01:08:18,058 --> 01:08:19,360 AND THOSE WOULD BE THE WILL 1481 01:08:19,360 --> 01:08:22,530 HAVES WHO HAVE AMYLOID PATHOLOGY 1482 01:08:22,530 --> 01:08:24,231 IN THE BRAIN BUT DO NOT 1483 01:08:24,231 --> 01:08:24,832 DEMONSTRATE SYMPTOMS. 1484 01:08:24,832 --> 01:08:27,668 THOSE THE INDIVIDUALS THAT ALSO 1485 01:08:27,668 --> 01:08:28,969 IN THE GENERAL POPULATION MAY BE 1486 01:08:28,969 --> 01:08:30,638 THE POPULATION THAT WOULD SHOW 1487 01:08:30,638 --> 01:08:32,940 THE MOST EFFICACY IN 1488 01:08:32,940 --> 01:08:33,808 INTERVENTION. 1489 01:08:33,808 --> 01:08:36,644 THE EARLIEST STAGE OF 1490 01:08:36,644 --> 01:08:40,247 ALZHEIMER'S DISEASE THAT CAN BE 1491 01:08:40,247 --> 01:08:42,216 DETECTED PRIOR TO SIGNIFICANT 1492 01:08:42,216 --> 01:08:45,019 TANGLE PATHOLOGY OR NEURO 1493 01:08:45,019 --> 01:08:45,352 DEGENERATION. 1494 01:08:45,352 --> 01:08:47,154 THERE'S SEVERAL TARGETS IN 1495 01:08:47,154 --> 01:08:48,255 TREATING ALZHEIMER'S DISEASE. 1496 01:08:48,255 --> 01:08:51,559 THE IMMUNOTHERAPY PATHWAY 1497 01:08:51,559 --> 01:08:53,427 TARGETS VARIOUS SPECIES OF BETA 1498 01:08:53,427 --> 01:08:54,428 AMYLOID PRODUCED. 1499 01:08:54,428 --> 01:08:56,831 AND IN THE GENETIC FORMS OF 1500 01:08:56,831 --> 01:08:57,832 ALZHEIMER'S DISEASE THESE ARE 1501 01:08:57,832 --> 01:08:59,366 OVER PRODUCED. 1502 01:08:59,366 --> 01:09:03,103 SO ONE CLEAR TARGET WOULD BE TO 1503 01:09:03,103 --> 01:09:11,512 GO AFTER THOSE MONOMERS AND 1504 01:09:11,512 --> 01:09:13,314 THERE'S MONOCLONAL ANTIBODY 1505 01:09:13,314 --> 01:09:18,419 TREATMENTS AGAINST BETA AMYLOID. 1506 01:09:18,419 --> 01:09:20,721 ONE IS USED IN CLINICAL 1507 01:09:20,721 --> 01:09:20,988 PRACTICE. 1508 01:09:20,988 --> 01:09:23,290 NONE OF THE TRIALS THAT IT STUDY 1509 01:09:23,290 --> 01:09:25,292 THE MONOCLONAL ANTIBODIES 1510 01:09:25,292 --> 01:09:27,695 INCLUDED A SINGLE PERSON WITH 1511 01:09:27,695 --> 01:09:28,028 DOWN SYNDROME. 1512 01:09:28,028 --> 01:09:29,396 THOUGH THESE DRUGS ARE AVAILABLE 1513 01:09:29,396 --> 01:09:30,965 IN THE POPULATION, CLINICIANS 1514 01:09:30,965 --> 01:09:33,100 ARE WONDERING GIVEN THE URGENCY 1515 01:09:33,100 --> 01:09:34,235 IN BRINGING TREATMENT TO THIS 1516 01:09:34,235 --> 01:09:35,636 POPULATION SHOULD THEY PRE IT OR 1517 01:09:35,636 --> 01:09:39,039 NOT AND THEY HAVE NO GUIDANCE. 1518 01:09:39,039 --> 01:09:41,642 ON THE RIGHT IS ONE OTHER 1519 01:09:41,642 --> 01:09:42,643 MECHANISM TO CONSIDER AND THAT 1520 01:09:42,643 --> 01:09:46,180 IS TARGETING APP ITSELF AS 1521 01:09:46,180 --> 01:09:48,582 DR. HEAD MENTIONED THE EXTRA 1522 01:09:48,582 --> 01:09:50,551 COPY OF APP GENE LEADS TO AN 1523 01:09:50,551 --> 01:09:56,757 OVERPRODUCTION OF APP PROTEIN 1524 01:09:56,757 --> 01:10:01,829 AND THAT LEADS TO THE CASES OF 1525 01:10:01,829 --> 01:10:05,399 PEOPLE WITH BETA AMYLOID AND 1526 01:10:05,399 --> 01:10:08,802 THEY DO NOT EXHIBIT ALZHEIMER'S 1527 01:10:08,802 --> 01:10:17,144 PATHOLOGY OR SYMPTOMOTOLOGY. 1528 01:10:17,144 --> 01:10:25,119 WE HELPED DEVELOP A VACCINE 1529 01:10:25,119 --> 01:10:26,453 DELIVERED TO INDIVIDUALS IN A 1530 01:10:26,453 --> 01:10:28,122 GENERAL POPULATION AND TRIALS 1531 01:10:28,122 --> 01:10:29,390 AND ALSO IN THE DOWN SYNDROME 1532 01:10:29,390 --> 01:10:29,957 POPULATION. 1533 01:10:29,957 --> 01:10:31,392 THIS WAYS VERY SMALL TRIAL. 1534 01:10:31,392 --> 01:10:33,394 WE THOUGHT A VACCINE WOULD BE 1535 01:10:33,394 --> 01:10:35,796 SIMILAR TO SUB CUTANEOUS 1536 01:10:35,796 --> 01:10:36,463 ADMINISTRATION, SOMETHING MORE 1537 01:10:36,463 --> 01:10:38,532 AMENABLE FOR THIS POPULATION. 1538 01:10:38,532 --> 01:10:45,406 WE HAD NO CASES OF THE AMYLOID 1539 01:10:45,406 --> 01:10:48,575 RELATED IMAGING ASSOCIATED AND 1540 01:10:48,575 --> 01:10:51,011 NO EVIDENCE OF CNS INFLAMMATION, 1541 01:10:51,011 --> 01:10:52,279 AGAIN, THAT BEING A CONCERN IN 1542 01:10:52,279 --> 01:10:57,418 THIS POPULATION AS MENTIONED BY 1543 01:10:57,418 --> 01:11:03,090 DR. SANTORO. 1544 01:11:03,090 --> 01:11:05,426 ONLY A PERCENTAGE DEVELOPED THE 1545 01:11:05,426 --> 01:11:07,661 TITERS AND WERE NOT ASSOCIATED 1546 01:11:07,661 --> 01:11:11,632 AND 33% TOLD US WE DOSED IT TOO 1547 01:11:11,632 --> 01:11:12,032 LOW. 1548 01:11:12,032 --> 01:11:14,234 IT DID NOT ELICIT ENOUGH OF AN 1549 01:11:14,234 --> 01:11:14,635 IMMUNE RESPONSE. 1550 01:11:14,635 --> 01:11:19,440 WE LAUNCHED THE ABATE TRAIL. 1551 01:11:19,440 --> 01:11:23,877 AN ACT-DS TRIAL USING OUR SITES 1552 01:11:23,877 --> 01:11:26,547 AND METHODOLOGIES TO RUN THE 1553 01:11:26,547 --> 01:11:28,282 BEST TRIAL IN THE SAFEST WAY FOR 1554 01:11:28,282 --> 01:11:31,285 THE POPULATION. 1555 01:11:31,285 --> 01:11:32,419 IT'S A DOUBLE-BLIND TRIAL 1556 01:11:32,419 --> 01:11:39,793 LOOKING AT SAFETY AND 1557 01:11:39,793 --> 01:11:40,127 TOLERABILITY. 1558 01:11:40,127 --> 01:11:48,035 OUR GOAL IS TO HIT 80 1559 01:11:48,035 --> 01:11:52,006 PARTICIPANTS WITH EVIDENCE OF 1560 01:11:52,006 --> 01:11:53,474 AMYLOID AND IT SEEMS TO BE THE 1561 01:11:53,474 --> 01:11:55,275 AGE RANGE WITH THE LEAST AMOUNT 1562 01:11:55,275 --> 01:11:59,847 OF MICROHEMORRHAGES AND THE 1563 01:11:59,847 --> 01:12:01,815 BEGINS OF AMYLOID ELEVATION AND 1564 01:12:01,815 --> 01:12:04,251 WOULD HAVE TO HAVE PRIOR 1565 01:12:04,251 --> 01:12:06,353 EVIDENCE OF TESTING WITH HIGH 1566 01:12:06,353 --> 01:12:08,789 RATES IN THAT GROUP. 1567 01:12:08,789 --> 01:12:10,357 PATIENTS WILL RECEIVE SIX 1568 01:12:10,357 --> 01:12:13,093 INTRAMUSCULAR INJECTIONS WITH A 1569 01:12:13,093 --> 01:12:16,730 26 AL FOLLOW UP AND 14 SITES, 1570 01:12:16,730 --> 01:12:18,298 SEVEN IN THE U.S. AND E.U. 1571 01:12:18,298 --> 01:12:19,867 PARTICIPATING IN THE STUDY WITH 1572 01:12:19,867 --> 01:12:20,868 THREE MORE U.S. SITES UNDER 1573 01:12:20,868 --> 01:12:21,201 CONSIDERATION. 1574 01:12:21,201 --> 01:12:25,406 THE STUDY WAS LAUNCHED LAST YEAR 1575 01:12:25,406 --> 01:12:30,277 AND IS ONGOING. 1576 01:12:30,277 --> 01:12:32,212 OTHER TARGETS INCLUDE APP AND 1577 01:12:32,212 --> 01:12:35,149 THE USE OF MONOCLONAL 1578 01:12:35,149 --> 01:12:35,549 ANTIBODIES. 1579 01:12:35,549 --> 01:12:36,884 WE'LL BE LAUNCHING A SECOND 1580 01:12:36,884 --> 01:12:42,823 TRIAL THIS SUMMER USING AN 1581 01:12:42,823 --> 01:12:46,527 ANTI-APPASO AN ANTI-OLIGO 1582 01:12:46,527 --> 01:12:48,629 NUCLEOTIDE GIVEN DIRECTLY IN THE 1583 01:12:48,629 --> 01:12:52,066 CNS TO EXPRESS THE EXPRESSION OF 1584 01:12:52,066 --> 01:12:55,035 APP PROTEIN FROM THE mRNA. 1585 01:12:55,035 --> 01:12:58,906 LATER THIS YEAR WE'LL LAUNCH AN 1586 01:12:58,906 --> 01:13:01,442 MONOCLONAL ANTIBODY TRIAL IN 1587 01:13:01,442 --> 01:13:02,176 THIS POPULATION TO TEST THE 1588 01:13:02,176 --> 01:13:08,082 SAFETY AND EFFICACY IN DOWN 1589 01:13:08,082 --> 01:13:10,284 SYNDROME AND AS WE THINK OF THE 1590 01:13:10,284 --> 01:13:11,652 PROTOCOLS AND MESSAGING AND 1591 01:13:11,652 --> 01:13:12,653 COLLABORATING WITH OUR 1592 01:13:12,653 --> 01:13:14,855 COMMUNITY, WE'VE PUT TOGETHER A 1593 01:13:14,855 --> 01:13:16,090 RESEARCH PARTICIPANT ADVISORY 1594 01:13:16,090 --> 01:13:16,290 BOARD. 1595 01:13:16,290 --> 01:13:20,060 THIS IS MODELS AFTER THE ACTC 1596 01:13:20,060 --> 01:13:20,928 RESEARCH PARTICIPANT ADVISORY 1597 01:13:20,928 --> 01:13:25,432 BOARD AND REALLY A PARTNERSHIP 1598 01:13:25,432 --> 01:13:31,205 ACROSS ACT-DS AND WE HAVE 1599 01:13:31,205 --> 01:13:33,440 SEVERAL MEMBERS HERE AS WELL AS 1600 01:13:33,440 --> 01:13:41,115 INDIVIDUALS FROM ACTC-DS AND 1601 01:13:41,115 --> 01:13:43,383 INDIVIDUALS AND REVIEWING US TO 1602 01:13:43,383 --> 01:13:44,985 MAKE SURE THEY'RE PROVIDING US 1603 01:13:44,985 --> 01:13:47,488 WITH INPUT ON WHAT IS TOO MUCH 1604 01:13:47,488 --> 01:13:49,356 BURDEN FOR TESTING, COGNITIVE 1605 01:13:49,356 --> 01:13:50,791 TESTING, IMAGING AND BLOOD DRAWS 1606 01:13:50,791 --> 01:13:53,827 AND SO ON SO THE TESTS ARE NOT 1607 01:13:53,827 --> 01:13:55,896 CONSIDERED TOO BURDENSOME AND 1608 01:13:55,896 --> 01:13:57,331 WOULD SOMEHOW PROHIBIT THEM FROM 1609 01:13:57,331 --> 01:13:59,299 WANTING TO PARTICIPATE. 1610 01:13:59,299 --> 01:14:01,869 WE'RE GETTING FEEDBACK FOR THE 1611 01:14:01,869 --> 01:14:03,737 POSSIBILITY OF CLINICS IN THE 1612 01:14:03,737 --> 01:14:04,004 EVENING. 1613 01:14:04,004 --> 01:14:05,739 MANY PARTICIPANTS HAVE JOBS AND 1614 01:14:05,739 --> 01:14:08,008 FEEL DEVOTED AND COMMITTED AND 1615 01:14:08,008 --> 01:14:09,710 WOULD LIKE TO HAVE FLEXIBILITY 1616 01:14:09,710 --> 01:14:12,980 IF PARTICIPATING IN RESEARCH. 1617 01:14:12,980 --> 01:14:14,114 WE'RE ACTIVELY WORKING ON WAYS 1618 01:14:14,114 --> 01:14:16,383 TO IMPROVE OUR PROTOCOL. 1619 01:14:16,383 --> 01:14:18,352 IN SUMMARY, SIGNIFICANT ADVANCES 1620 01:14:18,352 --> 01:14:22,322 HAVE BEEN MADE IN UNDERSTANDING 1621 01:14:22,322 --> 01:14:23,924 THE NATURAL HISTORY OF AD BIO 1622 01:14:23,924 --> 01:14:26,193 MARKERS AND THE REVISED CRITERIA 1623 01:14:26,193 --> 01:14:28,028 THAT DEFINE ALZHEIMER'S DISEASE 1624 01:14:28,028 --> 01:14:29,930 FOR THE FIRST TIME INCLUDE 1625 01:14:29,930 --> 01:14:31,331 PEOPLE WITH DOWN SYNDROME. 1626 01:14:31,331 --> 01:14:35,269 THIS ACKNOWLEDGE S THE GENETIC 1627 01:14:35,269 --> 01:14:36,603 BASIS FOR ALZHEIMER'S IN 1628 01:14:36,603 --> 01:14:37,604 POPULATION AND PUTS PEOPLE WITH 1629 01:14:37,604 --> 01:14:40,841 DOWN SYNDROME ON THE SAME 1630 01:14:40,841 --> 01:14:45,012 FOOTING AT AUTOSOMAL DOMINANT 1631 01:14:45,012 --> 01:14:46,647 AND AD AND CONSIDERED STAGE ZERO 1632 01:14:46,647 --> 01:14:47,948 OF ALZHEIMER'S DISEASE. 1633 01:14:47,948 --> 01:14:51,084 THERE'S THREE TRIALS FOR DISEASE 1634 01:14:51,084 --> 01:14:53,253 MODIFYING TREATMENTS AGAINST 1635 01:14:53,253 --> 01:14:54,488 ALZHEIMER'S DISEASE IF THE 1636 01:14:54,488 --> 01:14:55,389 POPULATION AND COMBINED WITH 1637 01:14:55,389 --> 01:14:56,089 ADDITIONAL COLLABORATORS AND 1638 01:14:56,089 --> 01:14:58,225 CONTINUE TO WORK TO BRING OTHER 1639 01:14:58,225 --> 01:15:00,594 IMMUNOTHERAPIES AND OTHER 1640 01:15:00,594 --> 01:15:02,162 MECHANISMS OF ACTION TO THIS 1641 01:15:02,162 --> 01:15:04,031 POPULATION SO THAT WE CAN GET 1642 01:15:04,031 --> 01:15:05,199 RID OF THE LEADING CAUSE OF 1643 01:15:05,199 --> 01:15:07,568 DEATH IN ADULTS WITH DOWN 1644 01:15:07,568 --> 01:15:08,135 SYNDROME. 1645 01:15:08,135 --> 01:15:11,972 WE HAVE SEVERAL COLLABORATORS 1646 01:15:11,972 --> 01:15:16,543 ACROSS ACTC-DS AND ABC-DS AND TE 1647 01:15:16,543 --> 01:15:16,977 COORDINATING CENTER. 1648 01:15:16,977 --> 01:15:24,484 THANK YOU VERY MUCH. 1649 01:15:24,484 --> 01:15:25,953 >> SO WE HAVE 10 MINUTES FOR 1650 01:15:25,953 --> 01:15:28,288 QUESTIONS. 1651 01:15:28,288 --> 01:15:33,894 SO PLEASE COME UP. 1652 01:15:33,894 --> 01:15:35,996 I WANT TO CONGRATULATION ALL THE 1653 01:15:35,996 --> 01:15:36,563 PANELISTS. 1654 01:15:36,563 --> 01:15:40,434 AS A PERSON WHO PAID MY TAXES 1655 01:15:40,434 --> 01:15:41,068 YESTERDAY I'M PROUD THEY GO IT 1656 01:15:41,068 --> 01:15:46,406 TO YOU. 1657 01:15:46,406 --> 01:15:51,378 DR. RAFII, MAY I ASK YOU, HOW 1658 01:15:51,378 --> 01:15:52,646 COMPLICATED HAS IT BEEN IN LIGHT 1659 01:15:52,646 --> 01:15:55,482 OF SOME CONTROVERSIES OVER THE 1660 01:15:55,482 --> 01:16:00,621 AMYLOID HYPOTHESIS IN TERMS OF 1661 01:16:00,621 --> 01:16:02,055 RECRUITMENT AND WHAT IS YOUR 1662 01:16:02,055 --> 01:16:03,357 PERSPECTIVE ON THE COVERAGE 1663 01:16:03,357 --> 01:16:05,392 ABOUT THE AMYLOID HYPOTHESIS? 1664 01:16:05,392 --> 01:16:12,132 THANK YOU. 1665 01:16:12,132 --> 01:16:13,867 >> I THINK THE CONTROVERSY HAS 1666 01:16:13,867 --> 01:16:16,903 SETTLED SINCE WE HAVE RANDOMIZED 1667 01:16:16,903 --> 01:16:20,674 PLACEBO TRIALS SHOWING TARGETING 1668 01:16:20,674 --> 01:16:23,377 AMYLOID IN WHAT'S CALLED EARLY 1669 01:16:23,377 --> 01:16:25,412 AD INDIVIDUALS WITH ELEVATED AD 1670 01:16:25,412 --> 01:16:28,315 OR MILD DEMENTIA PHASE HAS AN 1671 01:16:28,315 --> 01:16:28,548 EFFECT. 1672 01:16:28,548 --> 01:16:30,484 THESE TREATMENTS REDUCE AMYLOID 1673 01:16:30,484 --> 01:16:38,592 BY 50% OR EVEN 100% OVER 18 1674 01:16:38,592 --> 01:16:40,027 MONTHS AND SHOWN A 30% REDUCTION 1675 01:16:40,027 --> 01:16:41,862 IN COGNITIVE DECLINE. 1676 01:16:41,862 --> 01:16:44,398 36% MAY NOT SEEM SO MUCH BUT 1677 01:16:44,398 --> 01:16:45,866 WE'RE NOW RUNNING SECONDARY 1678 01:16:45,866 --> 01:16:47,868 PREVENTION TRIALS INCLUDING THE 1679 01:16:47,868 --> 01:16:51,438 HEAD STUDY AT AN EARLY STAGE TO 1680 01:16:51,438 --> 01:16:52,539 AROUNDS THAT QUESTION OF REMOVAL 1681 01:16:52,539 --> 01:16:56,777 OF AMYLOID PRIOR TO NEURO 1682 01:16:56,777 --> 01:16:57,110 DEGENERATION. 1683 01:16:57,110 --> 01:17:01,415 IN THOSE STUDIES WE HAVE SEEN 1684 01:17:01,415 --> 01:17:03,450 THE EARLY PARTICIPANTS THOSE 1685 01:17:03,450 --> 01:17:05,385 INDIVIDUALS WITH LESS PATHOLOGY 1686 01:17:05,385 --> 01:17:07,321 DID BETTER. 1687 01:17:07,321 --> 01:17:10,590 SO I BELIEVE WE'RE ON THE RIGHT 1688 01:17:10,590 --> 01:17:14,161 TRACK IN AMYLOID. 1689 01:17:14,161 --> 01:17:17,130 WARE READY TO LAUNCH THE AP TAU 1690 01:17:17,130 --> 01:17:18,965 PLATFORM THAT TARGETS AMYLOID 1691 01:17:18,965 --> 01:17:20,967 AND TAU AND IT COULD BE WE NEED 1692 01:17:20,967 --> 01:17:22,235 COMBINATION THERAPY AT THE LATER 1693 01:17:22,235 --> 01:17:25,939 STAGE OF THE DISEASE TO SEE 1694 01:17:25,939 --> 01:17:26,773 EFFICACY. 1695 01:17:26,773 --> 01:17:28,075 GIVEN THE URGENCY AND WHAT 1696 01:17:28,075 --> 01:17:29,409 CLINICIANS ARE FACING EVERY DAY 1697 01:17:29,409 --> 01:17:32,913 OUR RECRUITMENT AS EVIDENCE BY 1698 01:17:32,913 --> 01:17:34,181 ABC-DS AND TRACK DS IS MORE THAN 1699 01:17:34,181 --> 01:17:37,417 WE EXPECTED AND I THINK IT 1700 01:17:37,417 --> 01:17:39,586 REFLECTS THE DEMAND BY THIS 1701 01:17:39,586 --> 01:17:40,354 POPULATION TO GET ACCESS TO NEW 1702 01:17:40,354 --> 01:17:49,863 TREATMENTS. 1703 01:17:49,863 --> 01:17:53,133 >> I WANT TO CONGRATULATE THE 1704 01:17:53,133 --> 01:17:54,101 PANEL EFFORTS. 1705 01:17:54,101 --> 01:17:55,969 YOU DID A FANTASTIC JOB, THANK 1706 01:17:55,969 --> 01:17:56,536 YOU VERY MUCH. 1707 01:17:56,536 --> 01:18:00,640 I WANT TO ASK ABOUT ALZHEIMER'S 1708 01:18:00,640 --> 01:18:05,645 AND MAYBE FOR DR. SANTORO AND 1709 01:18:05,645 --> 01:18:10,650 RAFII AND DR. HEAD, HOW DO YOU 1710 01:18:10,650 --> 01:18:12,319 DETERMINE COGNITIVE FUNCTIONING? 1711 01:18:12,319 --> 01:18:21,862 I MEAN, IT'S A RANGE HOW DO YOU 1712 01:18:21,862 --> 01:18:22,696 DEFINE THAT? 1713 01:18:22,696 --> 01:18:23,830 NOBODY SPOKE ABOUT THAT. 1714 01:18:23,830 --> 01:18:25,298 >> THE ASSESSMENT OF COGNITION 1715 01:18:25,298 --> 01:18:30,604 IN THE GENERAL POPULATION CAN BE 1716 01:18:30,604 --> 01:18:34,941 CHALLENGING ENOUGH TO UNDERSTAND 1717 01:18:34,941 --> 01:18:36,376 THE VARIABILITY OVER TIME BUT 1718 01:18:36,376 --> 01:18:40,347 OVER THE LAST 30 YEARS THERE'S 1719 01:18:40,347 --> 01:18:42,616 BEEN INSTRUMENTS PRODUCED, 1720 01:18:42,616 --> 01:18:44,918 TESTED, VALIDATED TO DETECT 1721 01:18:44,918 --> 01:18:49,623 COGNITIVE CHANGE IN INDIVIDUALS 1722 01:18:59,032 --> 01:19:00,133 ASYMPTOMATIC AND THERE'S 1723 01:19:00,133 --> 01:19:01,435 SENSITIVITY TO EARLY COGNITIVE 1724 01:19:01,435 --> 01:19:03,103 DECLINE RELATED TO AMYLOID IN 1725 01:19:03,103 --> 01:19:04,504 THE BRAIN AND HAVE BEEN 1726 01:19:04,504 --> 01:19:06,706 VALIDATED AND ANCHORED WITH 1727 01:19:06,706 --> 01:19:07,908 BIOMARKERS BUT TO SPECIFICALLY 1728 01:19:07,908 --> 01:19:09,810 ANSWER YOUR QUESTION, THERE'S A 1729 01:19:09,810 --> 01:19:14,014 BATTERY OF TESTS IN ABC-DS THAT 1730 01:19:14,014 --> 01:19:16,349 BUILD ON DECADES OF RESEARCH 1731 01:19:16,349 --> 01:19:19,419 FUNDED BY THE NIH ACROSS SEVERAL 1732 01:19:19,419 --> 01:19:20,987 CENTERS PROVIDING THE BASIS FOR 1733 01:19:20,987 --> 01:19:26,827 USING THE BEST TOOLS TO IDENTIFY 1734 01:19:26,827 --> 01:19:29,429 INDIVIDUALS THEIR FULL COGNITION 1735 01:19:29,429 --> 01:19:33,099 AND I.Q. AND THOSE TESTS ALLOW 1736 01:19:33,099 --> 01:19:34,968 THE CONSENSUS DIAGNOSIS TO BE 1737 01:19:34,968 --> 01:19:37,404 MADE WHETHER SOMEONE IS 1738 01:19:37,404 --> 01:19:40,207 COGNITIVELY STABLE, IMPAIRED OR 1739 01:19:40,207 --> 01:19:40,474 DEMENTED. 1740 01:19:40,474 --> 01:19:40,907 >> THANK YOU. 1741 01:19:40,907 --> 01:19:44,744 I'D LIKE TO SEE CONCRETELY THE 1742 01:19:44,744 --> 01:19:45,412 PRESENTATION ON JUST THAT. 1743 01:19:45,412 --> 01:19:54,154 THANK YOU SO MUCH. 1744 01:19:54,154 --> 01:20:00,560 >> IT OCCURS TO ME I STUDY 1745 01:20:00,560 --> 01:20:02,095 AUDITORY DEVELOPMENT ACROSS THE 1746 01:20:02,095 --> 01:20:03,663 LIFE SPAN AND RATES OF HEARING 1747 01:20:03,663 --> 01:20:05,932 LOSS IN BOTH CHILDREN AND ADULTS 1748 01:20:05,932 --> 01:20:08,235 PROBABLY FOR DIFFERENT REASONS 1749 01:20:08,235 --> 01:20:10,337 ARE VERY HIGH WITH PREVALENCE 1750 01:20:10,337 --> 01:20:15,542 RATES UP TO 75% OR 80% AND WE 1751 01:20:15,542 --> 01:20:19,212 KNOW EVEN MILD HEARING LOSS CAN 1752 01:20:19,212 --> 01:20:23,984 PRESENT AS ADHD OR AFFECT YOUR 1753 01:20:23,984 --> 01:20:29,389 ABILITY TO DO A COGNITIVE TEST 1754 01:20:29,389 --> 01:20:33,393 OR MAYBE CONTRIBUTE TO SYMPTOMS 1755 01:20:33,393 --> 01:20:35,529 OF DEMENTIA AND FOR THOSE 1756 01:20:35,529 --> 01:20:39,199 MEASURING BEHAVIOR, HOW DO YOU 1757 01:20:39,199 --> 01:20:39,966 CONSIDER AND MEASURE HEARING 1758 01:20:39,966 --> 01:20:41,401 LOSS AND LOOK AT IT AS A FACTOR 1759 01:20:41,401 --> 01:20:43,770 AND IT MAY BE OUTSIDE THE SCOPE 1760 01:20:43,770 --> 01:20:47,941 OF WHAT DO YOU BUT IN OUR FIELD 1761 01:20:47,941 --> 01:20:49,409 THERE'S SOME REAL CLEAR EVIDENCE 1762 01:20:49,409 --> 01:20:50,610 HEARING LOSS CAN LEAD TO 1763 01:20:50,610 --> 01:20:53,847 BEHAVIORAL DIFFERENCES. 1764 01:20:53,847 --> 01:20:57,284 I'M WONDERING HOW AND WHAT YOU 1765 01:20:57,284 --> 01:20:58,385 DO TO CONSIDER HEARING LOSS IN 1766 01:20:58,385 --> 01:20:58,818 THESE MODELS. 1767 01:20:58,818 --> 01:21:02,255 >> IT'S A GREAT QUESTION. 1768 01:21:02,255 --> 01:21:03,490 FOR REGRESSION THE DIAGNOSIS IS 1769 01:21:03,490 --> 01:21:04,257 ONE OF EXCLUSION. 1770 01:21:04,257 --> 01:21:08,795 IF YOU LOOK AT THE CONSENSUS 1771 01:21:08,795 --> 01:21:10,397 CRITERIA WE'RE GOING THROUGH 1772 01:21:10,397 --> 01:21:11,498 SYSTEMATICALLY AND ASKING 1773 01:21:11,498 --> 01:21:13,433 QUESTIONS HAS THERE BEEN A 1774 01:21:13,433 --> 01:21:16,903 DECLINE IN ANY OF THESE SPECIFIC 1775 01:21:16,903 --> 01:21:19,739 FUNCTIONS AND GETTING TEST IN 1776 01:21:19,739 --> 01:21:21,341 ABSENCE OF CLINICAL SYMPTOMS AND 1777 01:21:21,341 --> 01:21:22,475 KNOW IT'S ISOLATED TO A 1778 01:21:22,475 --> 01:21:25,712 PARTICULAR DOMAIN IS EASIER THAN 1779 01:21:25,712 --> 01:21:26,846 GOING THROUGH THE PROCESS. 1780 01:21:26,846 --> 01:21:28,381 >> SO DO YOU MEASURE HEARING OR 1781 01:21:28,381 --> 01:21:29,249 ASK PEOPLE? 1782 01:21:29,249 --> 01:21:31,251 IT'S A VERY DIFFERENT -- YOU'LL 1783 01:21:31,251 --> 01:21:32,452 GET A VERY DIFFERENT ANSWER 1784 01:21:32,452 --> 01:21:37,591 ESPECIALLY IN CHILDREN WHO MAY 1785 01:21:37,591 --> 01:21:39,926 HAVE HEARING LOSS. 1786 01:21:39,926 --> 01:21:42,662 >> THEY TEND TO HAVE A LOT OF 1787 01:21:42,662 --> 01:21:44,764 TESTS 40% HAD A HEARING TEST WIN 1788 01:21:44,764 --> 01:21:46,499 A YEAR OR ORDER IT PART OF THE 1789 01:21:46,499 --> 01:21:48,768 DIAGNOSTIC WORK UP BUT IT'S NOT 1790 01:21:48,768 --> 01:21:50,337 STANDARD UNLESS THERE'S CLINICAL 1791 01:21:50,337 --> 01:21:52,305 SYMPTOMS ISOLATED TO LANGUAGE 1792 01:21:52,305 --> 01:21:52,539 DOMAIN. 1793 01:21:52,539 --> 01:21:55,175 >> THAT MAKES SENSE, OF COURSE. 1794 01:21:55,175 --> 01:22:01,881 >> AND THEN FOR OURS WE DO A 1795 01:22:01,881 --> 01:22:05,018 SCREENING FOR ADHD INDICATIONS. 1796 01:22:05,018 --> 01:22:07,253 WE'RE DOING DIFFERENTIAL 1797 01:22:07,253 --> 01:22:08,488 DIAGNOSES AND DOING COLLECTING 1798 01:22:08,488 --> 01:22:10,357 OF CO-OCCURRING CONDITIONS. 1799 01:22:10,357 --> 01:22:13,226 THANK YOU BECAUSE I FORGOT 1800 01:22:13,226 --> 01:22:15,362 SOMETHING I WANTED TO SAY AND 1801 01:22:15,362 --> 01:22:17,397 THAT'S THE ADDITIONAL CHALLENGE 1802 01:22:17,397 --> 01:22:20,300 NONE OF OUR KIDS ARE PURELY DOWN 1803 01:22:20,300 --> 01:22:21,334 SYNDROME OR ADHD. 1804 01:22:21,334 --> 01:22:23,303 THERE'LL BE CO-OCCURRING 1805 01:22:23,303 --> 01:22:23,770 CONDITIONS. 1806 01:22:23,770 --> 01:22:26,840 IN OURS WE'RE GOING ON PARENT 1807 01:22:26,840 --> 01:22:29,309 REPORT NOT TESTING FOR AUDIOLOGY 1808 01:22:29,309 --> 01:22:31,411 BUT DOING SLEEP SCREENINGS AND 1809 01:22:31,411 --> 01:22:32,412 DO RECORD THE OTHER CO-OCCURRING 1810 01:22:32,412 --> 01:22:34,014 CONDITIONS AND 75% OF OUR KIDS 1811 01:22:34,014 --> 01:22:36,983 HAVE A HEARING IMPAIRMENT AND 1812 01:22:36,983 --> 01:22:37,717 SOMEWHAT VISUAL IMPAIRMENT AND 1813 01:22:37,717 --> 01:22:39,786 THAT'S WHAT WE LOOK AT IN TERMS 1814 01:22:39,786 --> 01:22:41,221 OF NOT EXCLUDING KIDS BUT THEN 1815 01:22:41,221 --> 01:22:43,356 TRACKING IT AND THEN 1816 01:22:43,356 --> 01:22:44,658 INCORPORATING THAT INTO OUR 1817 01:22:44,658 --> 01:22:44,991 ANALYTIC PLAN. 1818 01:22:44,991 --> 01:22:45,392 >> OKAY. 1819 01:22:45,392 --> 01:22:49,929 THANK YOU. 1820 01:22:49,929 --> 01:22:52,399 >> I'M FROM THE ALZHEIMER'S 1821 01:22:52,399 --> 01:22:55,635 WORLD AND ABC-DS WE CAPTURE BUT 1822 01:22:55,635 --> 01:22:56,836 DON'T GET ACTUAL TESTING DONE 1823 01:22:56,836 --> 01:22:59,739 AND THAT'S GOING TO BE 1824 01:22:59,739 --> 01:23:04,944 POTENTIALLY A BIG TOROCONTRIBUTO 1825 01:23:04,944 --> 01:23:06,146 OUR NEURO PSYCH MEASURES. 1826 01:23:06,146 --> 01:23:07,881 >> THANK YOU FOR THE PROGRESS 1827 01:23:07,881 --> 01:23:09,449 THAT'S BEEN CLEARLY BEING MADE 1828 01:23:09,449 --> 01:23:11,685 IN CLINICAL TRIALS AND I WANTED 1829 01:23:11,685 --> 01:23:14,954 TO THROW IN ANOTHER AREA I THINK 1830 01:23:14,954 --> 01:23:16,423 WE DO STILL NEED CLINICAL TRIAL 1831 01:23:16,423 --> 01:23:20,360 DEVELOPMENT IS ANOTHER AREA 1832 01:23:20,360 --> 01:23:21,227 WHERE PEOPLE WITH DOWN SYNDROME 1833 01:23:21,227 --> 01:23:22,395 ARE TRADITIONALLY EXCLUDE FROM 1834 01:23:22,395 --> 01:23:23,396 THE PHARMACEUTICAL WORLD AND 1835 01:23:23,396 --> 01:23:29,269 THAT'S IN AGE-RELATED BONE LOSS 1836 01:23:29,269 --> 01:23:39,813 AND WITH THIS AND WONDERING IF 1837 01:24:04,971 --> 01:24:08,141 THERE'S MEASUREMENT BY HRPPCT AB 1838 01:24:08,141 --> 01:24:12,679 IT'S A BIG ISSUE FOR THOSE OF US 1839 01:24:12,679 --> 01:24:15,115 THINK IN THIS FIELD IN THIS 1840 01:24:15,115 --> 01:24:16,449 ARENA AND WONDERING WHETHER 1841 01:24:16,449 --> 01:24:21,421 THEY'RE PEDIATRIC PATIENTS OR 1842 01:24:21,421 --> 01:24:22,455 ALZHEIMER'S GROUP IF THAT'S 1843 01:24:22,455 --> 01:24:24,891 SOMETHING CONSIDERED AND IF THE 1844 01:24:24,891 --> 01:24:28,495 ANSWER'S NO, THAT'S FINE, IT 1845 01:24:28,495 --> 01:24:31,898 JUST MEANS I JUST HAVE MORE 1846 01:24:31,898 --> 01:24:32,465 STUFF TO DO. 1847 01:24:32,465 --> 01:24:36,035 >> OR ABC-DS THE ANSWER IS KNOW 1848 01:24:36,035 --> 01:24:37,570 AND THE MEETING HAS BEEN 1849 01:24:37,570 --> 01:24:39,906 REVEALING AND THE OTHER ASPECT 1850 01:24:39,906 --> 01:24:42,542 OF THE AGING PROCESS IS LOOKING 1851 01:24:42,542 --> 01:24:45,011 AT SEX DIFFERENCES WITH WOMEN 1852 01:24:45,011 --> 01:24:47,380 GOING THROUGH MENOPAUSE SIX TO 1853 01:24:47,380 --> 01:24:49,048 SEVEN YEARS YOUNGER WITH DOWN 1854 01:24:49,048 --> 01:24:51,084 SYNDROME THAT WILL IMPACT BONE 1855 01:24:51,084 --> 01:24:51,351 LOSS. 1856 01:24:51,351 --> 01:24:53,419 I LOVE THAT YOU'RE POINTING THIS 1857 01:24:53,419 --> 01:24:55,054 OUT AND THAT'S A MESSAGE I'LL 1858 01:24:55,054 --> 01:24:57,423 TAKE BACK TO OUR TEAM. 1859 01:24:57,423 --> 01:24:59,058 THANK YOU. 1860 01:24:59,058 --> 01:25:06,733 >> THE ONLY GROUP WE LOOKED AT 1861 01:25:06,733 --> 01:25:08,835 IS PATIENTS WITH EPILEPSY. 1862 01:25:08,835 --> 01:25:14,307 >> THEY'RE BONE LOSS INDUCING IN 1863 01:25:14,307 --> 01:25:15,975 THE CONTEXT. 1864 01:25:15,975 --> 01:25:17,110 I JUST WANTED TO THROW IT OUT 1865 01:25:17,110 --> 01:25:17,410 THERE. 1866 01:25:17,410 --> 01:25:27,754 THANK YOU VERY MUCH. 1867 01:25:31,958 --> 01:25:34,027 >> WE HAVE TIME FOR ONE MORE 1868 01:25:34,027 --> 01:25:34,294 QUESTION. 1869 01:25:34,294 --> 01:25:37,397 I'LL BE PROVOCATIVE. 1870 01:25:37,397 --> 01:25:39,432 IN YOUR CLINICAL TRIALS YOU 1871 01:25:39,432 --> 01:25:41,167 FOUND DROP OUT DUE TO SIDE 1872 01:25:41,167 --> 01:25:43,436 EFFECT AND THE DOSES OF THE 1873 01:25:43,436 --> 01:25:44,804 MEDICATIONS YOU WERE TRIALING 1874 01:25:44,804 --> 01:25:46,306 WERE TOO HIGH. 1875 01:25:46,306 --> 01:25:50,243 JUST WONDERING WHETHER WE SHOULD 1876 01:25:50,243 --> 01:25:53,413 BE THINK ABOUT IN THE DOWN 1877 01:25:53,413 --> 01:25:56,115 SYNDROME AND THERAPEUTICS AND 1878 01:25:56,115 --> 01:26:02,622 START AT LOWER DOSES THAN THE 1879 01:26:02,622 --> 01:26:03,223 NANE-DOWN SYNDROME DIAGNOSIS. 1880 01:26:03,223 --> 01:26:11,865 >> YES. 1881 01:26:11,865 --> 01:26:13,600 AND THOUGH WE MADE OURS MORE 1882 01:26:13,600 --> 01:26:16,035 CONSERVATIVE WE HAD TO BE MORE 1883 01:26:16,035 --> 01:26:16,669 CONSERVATIVE THAN WE WERE BEING 1884 01:26:16,669 --> 01:26:26,546 INITIALLY. 1885 01:26:26,546 --> 01:26:28,248 AND THE MECHANISM IS NICE FOR 1886 01:26:28,248 --> 01:26:29,616 STARTING IT AND FIXING IT AND 1887 01:26:29,616 --> 01:26:38,591 DOING IT WELL. 1888 01:26:38,591 --> 01:26:42,428 >> ONE THING FOR US IS IT'S DOSE 1889 01:26:42,428 --> 01:26:43,997 DEPENDENT AND WE'LL TRITATE 1890 01:26:43,997 --> 01:26:45,565 UPWARDS AND WE'RE CAUGHT BECAUSE 1891 01:26:45,565 --> 01:26:48,134 WARE DOING A SHORT STUDY AND HAD 1892 01:26:48,134 --> 01:26:50,970 TO TITRATE FAIRLY QUICKLY AND 1893 01:26:50,970 --> 01:26:53,406 WONDERING IF THAT'S WHY SOME 1894 01:26:53,406 --> 01:26:55,541 SIDE EFFECTS WERE THERE AND 1895 01:26:55,541 --> 01:26:58,811 GETTING PEOPLE IN STUDIES IS 1896 01:26:58,811 --> 01:27:01,414 CHALLENGING AND GETTING KIDS 1897 01:27:01,414 --> 01:27:06,886 INVOLVED IN DRAWING BLOOD AND 1898 01:27:06,886 --> 01:27:08,454 THE ANSWER IS YES. 1899 01:27:08,454 --> 01:27:10,757 >> I'LL BE THE DISSENTING VOICE 1900 01:27:10,757 --> 01:27:13,726 AND SAY NO. 1901 01:27:13,726 --> 01:27:16,462 WITH OUR LORAZEPAM WE HAD TO USE 1902 01:27:16,462 --> 01:27:20,533 HIGHER DOSES AND WE SEE A 1903 01:27:20,533 --> 01:27:22,368 PARADOXICAL EFFECT CLINICALLY AT 1904 01:27:22,368 --> 01:27:26,272 LOWER DOSES OF BENZODIAZEPEINES 1905 01:27:26,272 --> 01:27:28,474 MAKES THEM WORSE AND TELL THEM 1906 01:27:28,474 --> 01:27:30,243 TO PUSH THROUGH FOR THE HIGHER 1907 01:27:30,243 --> 01:27:40,286 DOSE THAT IS BEN FIRM -- 1908 01:27:40,286 --> 01:27:40,586 BENEFICIAL. 1909 01:27:40,586 --> 01:27:43,456 THERE'S DIFFERENT METABOLISMS. 1910 01:27:43,456 --> 01:27:45,291 >> AND WE STILL FIND OUT WHAT 1911 01:27:45,291 --> 01:27:46,459 HAPPENS TO THEM AFTERWARDS AND 1912 01:27:46,459 --> 01:27:49,696 THOSE WHO HAVE GONE BACK ON 1913 01:27:49,696 --> 01:27:50,430 MEDICATION. 1914 01:27:50,430 --> 01:27:51,965 IT'S MORE THE INITIAL GUT 1915 01:27:51,965 --> 01:27:52,699 REACTION AND TRY SOMETHING ELSE 1916 01:27:52,699 --> 01:27:54,100 AND THEY COME BACK TO THE SAME 1917 01:27:54,100 --> 01:27:55,234 DRUG. 1918 01:27:55,234 --> 01:27:57,971 THEY'RE NOT IN THE TRIAL BUT 1919 01:27:57,971 --> 01:27:59,038 THIS IS THE COMMUNITY THAT IS 1920 01:27:59,038 --> 01:28:00,540 HERE TO HELP EACH OTHER AND 1921 01:28:00,540 --> 01:28:04,077 HAVING THE CONNECTIONS AND 1922 01:28:04,077 --> 01:28:04,410 FOLLOWING UP. 1923 01:28:04,410 --> 01:28:05,511 >> ALL RIGHT, I THINK WE'LL HAVE 1924 01:28:05,511 --> 01:28:07,080 TO CALL THE SESSION. 1925 01:28:07,080 --> 01:28:07,613 THANK YOU ALL. 1926 01:28:07,613 --> 01:28:10,350 THIS WAS TERRIFIC. 1927 01:28:10,350 --> 01:28:14,320 WE'RE GOING TO BRING UP SESSION 1928 01:28:14,320 --> 01:28:15,621 8 AND MY COLLEAGUE WILL 1929 01:28:15,621 --> 01:28:16,089 INTRODUCE SESSION 8. 1930 01:28:16,089 --> 01:28:26,399 THANKS, EVERYONE. 1931 01:28:47,253 --> 01:28:51,157 >> I'M ERICA TARVER AND HAPPY TO 1932 01:28:51,157 --> 01:28:53,159 HAVE TWO AMAZING PRESENTERS. 1933 01:28:53,159 --> 01:28:57,697 I'M A LITTLE BIT BIASSED BECAUSE 1934 01:28:57,697 --> 01:28:58,731 I'M IN THE SESSION AND 1935 01:28:58,731 --> 01:29:01,234 DR. SANTORO YOU HEARD FROM 1936 01:29:01,234 --> 01:29:02,969 ALREADY AND DR. TONI. 1937 01:29:02,969 --> 01:29:04,270 I'LL TALKING ABOUT 1938 01:29:04,270 --> 01:29:06,406 CONSIDERATIONS TO PREPARE FOR 1939 01:29:06,406 --> 01:29:07,073 CLINICAL TRIALS. 1940 01:29:07,073 --> 01:29:17,483 FIRST UP IS DR. SANTORO. 1941 01:29:17,683 --> 01:29:18,184 ALL RIGHT. 1942 01:29:18,184 --> 01:29:21,854 SO THIS IS KIND OF TO GO OFF 1943 01:29:21,854 --> 01:29:23,856 WHAT WE WERE TALKING ABOUT IN 1944 01:29:23,856 --> 01:29:24,290 CLINICAL TRIALS. 1945 01:29:24,290 --> 01:29:26,159 HAVING THE TALKS BACK TO BACK IS 1946 01:29:26,159 --> 01:29:29,262 BENEFICIAL FOR US BUT I WANT TO 1947 01:29:29,262 --> 01:29:30,129 HIGHLIGHT OUR EXPERIENCE GOING 1948 01:29:30,129 --> 01:29:31,531 FROM THE CLINICAL END OF THINGS 1949 01:29:31,531 --> 01:29:37,737 WHICH IS WHERE MY DOMAIN IS AND 1950 01:29:37,737 --> 01:29:41,574 PARTNERING> 1951 01:29:41,574 --> 01:29:45,411 PARTNERING 1952 01:29:45,411 --> 01:29:49,749 PARTNERING WITH THIS INCLUDE IS 1953 01:29:49,749 --> 01:29:52,752 BEING ABLE TO PAIR UP BASIC 1954 01:29:52,752 --> 01:29:53,753 TRANSLATIONAL AND CLINICAL 1955 01:29:53,753 --> 01:29:56,722 SCIENCE ALL TOGETHER. 1956 01:29:56,722 --> 01:30:04,097 WITHOUT GOING INTO TOO MUCH 1957 01:30:04,097 --> 01:30:05,398 NAMERATION OF THE INCLUDE 1958 01:30:05,398 --> 01:30:07,667 INITIATIVE AND WHEN WE LACK AT 1959 01:30:07,667 --> 01:30:08,668 THE RESEARCH ON THE BASIC 1960 01:30:08,668 --> 01:30:10,236 SCIENCE END WE TALK ABOUT IS IS 1961 01:30:10,236 --> 01:30:10,937 THIS READY FOR PRIME TIME? 1962 01:30:10,937 --> 01:30:13,372 ARE WE READY TO TAKE THE BASIC 1963 01:30:13,372 --> 01:30:17,410 SCIENCE FINDINGS AND TRANSLATE 1964 01:30:17,410 --> 01:30:18,911 THEM TO CLINICAL TRIAL OR 1965 01:30:18,911 --> 01:30:19,879 EXPLORATORY BIOMARKER STUDY. 1966 01:30:19,879 --> 01:30:22,915 WHEN WE LOOK AT THIS, SHOULD IT 1967 01:30:22,915 --> 01:30:26,552 BE EXPLORATORY AND SHOULD WE USE 1968 01:30:26,552 --> 01:30:31,724 THE BASIC SCIENCE DATA IT TO 1969 01:30:31,724 --> 01:30:33,259 GENERATE DATA AND LOOK AT 1970 01:30:33,259 --> 01:30:38,297 IMAGING AND SAFETY LABS AND THIS 1971 01:30:38,297 --> 01:30:41,667 IS WHERE THE COMBINATION IS 1972 01:30:41,667 --> 01:30:44,070 PAIRING SCIENTISTS WITH 1973 01:30:44,070 --> 01:30:45,371 CLINICIANS AND IT COMES FROM AN 1974 01:30:45,371 --> 01:30:48,040 INFORMATION OF THE CLINICAL 1975 01:30:48,040 --> 01:30:53,579 ASPECTS OF THE DISEASE AND 1976 01:30:53,579 --> 01:30:54,313 MECHANISMS. 1977 01:30:54,313 --> 01:30:56,849 I'LL USE OUR CURRENT CLINICAL 1978 01:30:56,849 --> 01:30:59,485 TRIALS AND WE HAD A GROUP 1979 01:30:59,485 --> 01:31:05,124 PUBLISHING ON INTERFERON AND AS 1980 01:31:05,124 --> 01:31:08,561 A FRESH OUT OF FELLOWSHIP 1981 01:31:08,561 --> 01:31:13,566 NEUROLOGIST WE PUBLISHED ON A 1982 01:31:13,566 --> 01:31:15,468 DOWN SYNDROME DISINTEGRATION 1983 01:31:15,468 --> 01:31:18,905 DISORDER WHICH WE RENAMED THEN 1984 01:31:18,905 --> 01:31:21,407 AND IN THE MIDDLE OF THE 1985 01:31:21,407 --> 01:31:25,411 PANDEMIC SAID DO YOU THINK THAT 1986 01:31:25,411 --> 01:31:27,680 DOWN SYNDROME DEGREDATION 1987 01:31:27,680 --> 01:31:29,282 DISORDER IS INFLAMMATORY RELATED 1988 01:31:29,282 --> 01:31:33,085 AND HE SAID THIS IS JUAQUIN AND 1989 01:31:33,085 --> 01:31:34,954 I THINK WE SHOULD WORK TOGETHER. 1990 01:31:34,954 --> 01:31:36,389 AND I THOUGHT MAKING THE 1991 01:31:36,389 --> 01:31:38,524 PRESENTATION SLIDES THIS WAS THE 1992 01:31:38,524 --> 01:31:39,692 ONSET OF PAIRING BASIC SCIENCE 1993 01:31:39,692 --> 01:31:41,928 INFORMATION OF WHAT WAS GOING ON 1994 01:31:41,928 --> 01:31:43,529 IN DOWN SYNDROME OVER ALL AND 1995 01:31:43,529 --> 01:31:44,697 PAIRING THAT WITH WHAT THE 1996 01:31:44,697 --> 01:31:45,932 PHENOTYPE WE WERE JUST STARTING 1997 01:31:45,932 --> 01:31:54,307 TO SEE IN THE CLINIC WAS. 1998 01:31:54,307 --> 01:31:57,009 THERE WAS OBJECTIVE BIOMARKERS 1999 01:31:57,009 --> 01:31:57,710 OF INFLAMMATION IN THE 2000 01:31:57,710 --> 01:31:58,010 INDIVIDUALS. 2001 01:31:58,010 --> 01:32:04,317 WE APPLIED FOR AN R61, R33 PHASE 2002 01:32:04,317 --> 01:32:10,056 1 AND I APPLIED FOR THAT A DAY 2003 01:32:10,056 --> 01:32:12,558 AFTER MY DAUGHTER WAS BORN AND 2004 01:32:12,558 --> 01:32:16,062 SHE'S MY GRANT BABY AND WE'RE 2005 01:32:16,062 --> 01:32:16,662 HERE TALKING ABOUT RESEARCH 2006 01:32:16,662 --> 01:32:18,531 SUCCESS AND A GREAT 2007 01:32:18,531 --> 01:32:19,665 COLLABORATION OF A GROUP OF 2008 01:32:19,665 --> 01:32:24,904 SCIENTISTS AND CLINICIANS TO GET 2009 01:32:24,904 --> 01:32:32,712 THE PROJECT ROLLING. 2010 01:32:32,712 --> 01:32:34,247 AND YOU MAY SEE THE STAGE IS 2011 01:32:34,247 --> 01:32:37,383 WHAT IS THE P.I. OR P.I.s NEED 2012 01:32:37,383 --> 01:32:39,385 TO DEMONSTRATE IN THE TRIAL AND 2013 01:32:39,385 --> 01:32:41,387 WHAT STAGE OF INVESTMENT ARE WE 2014 01:32:41,387 --> 01:32:41,787 IN? 2015 01:32:41,787 --> 01:32:52,331 YOU'LL SEE SOME SLIDES ARE PHASE 2016 01:32:54,400 --> 01:32:56,869 I /II OR MOVING FORWARD TO SAY 2017 01:32:56,869 --> 01:32:59,205 WE KNOW IT'S SAFE AND THE DOSE 2018 01:32:59,205 --> 01:33:01,741 WE SHOULD BE USING AND LOOK AT 2019 01:33:01,741 --> 01:33:05,544 PLACEBO CONTROLLED PHASE STUDY. 2020 01:33:05,544 --> 01:33:07,280 WHAT ARE STANDARD OF CARE AND 2021 01:33:07,280 --> 01:33:08,147 WHAT ARE CLINICIANS IN THE 2022 01:33:08,147 --> 01:33:08,981 COMMUNITY DOING. 2023 01:33:08,981 --> 01:33:11,584 IT'S A CRITICAL UNDERSTANDING 2024 01:33:11,584 --> 01:33:16,589 FOR HOW WE DEVELOP THE CLINICAL 2025 01:33:16,589 --> 01:33:17,056 TRIAL IN THE BACK END. 2026 01:33:17,056 --> 01:33:22,228 AND I THINK THE SIGNING TESTS IN 2027 01:33:22,228 --> 01:33:25,231 THE ROOM KNOW BEING AND GET 2028 01:33:25,231 --> 01:33:28,601 PRODUCTS IN TO THE HANDS AND A 2029 01:33:28,601 --> 01:33:31,604 CLINICAL TRIAL THAT WILL PRODUCE 2030 01:33:31,604 --> 01:33:34,006 THE DESIRED RESULT IS IMPORTANT. 2031 01:33:34,006 --> 01:33:35,474 WE DON'T WANT TO TWEAK THINGS 2032 01:33:35,474 --> 01:33:36,742 TOO MUCH BUT GOES INTO STUDY 2033 01:33:36,742 --> 01:33:38,044 DESIGN GENERATION AND WHAT ARE 2034 01:33:38,044 --> 01:33:40,613 THE PATIENTS MOST LIKELY TO 2035 01:33:40,613 --> 01:33:41,013 PARTICIPATE IN? 2036 01:33:41,013 --> 01:33:43,382 ALL ALL STUDIES ARE CREATED 2037 01:33:43,382 --> 01:33:43,849 EQUALLY. 2038 01:33:43,849 --> 01:33:46,852 WE LIKE THE R61 PHASE BECAUSE WE 2039 01:33:46,852 --> 01:33:49,422 CAN TEASE OUT WHAT IS TOO MUCH 2040 01:33:49,422 --> 01:33:50,956 FOR FAMILIES AND TOO LITTLE. 2041 01:33:50,956 --> 01:33:53,359 WHEN WE GOOD THROUGH THINGS, THE 2042 01:33:53,359 --> 01:33:55,294 TRIAL DESIGN IS SOMEWHAT 2043 01:33:55,294 --> 01:33:56,362 TAILORED TO THE ACTUAL PHASE OF 2044 01:33:56,362 --> 01:33:58,130 THE STUDY YOU'RE DEVELOPING. 2045 01:33:58,130 --> 01:34:00,733 IS THIS SOMETHING WHERE WE NEED 2046 01:34:00,733 --> 01:34:02,435 TO BE RANDOMIZED OR 2047 01:34:02,435 --> 01:34:04,370 NON-RANDOMIZED, OPEN LABEL OR 2048 01:34:04,370 --> 01:34:06,572 SINGLE OR IN SOME CASES DOUBLE 2049 01:34:06,572 --> 01:34:06,872 BLIND? 2050 01:34:06,872 --> 01:34:08,174 DOES IT NEED TO BE PLACEBO 2051 01:34:08,174 --> 01:34:11,277 CONTROL VERSUS STANDARD OF CARE 2052 01:34:11,277 --> 01:34:14,146 OR IN MANY RARE NEUROLOGICAL 2053 01:34:14,146 --> 01:34:16,115 DISEASES, HISTORICAL CONTROL. 2054 01:34:16,115 --> 01:34:18,417 FOR THOSE WHO FOLLOW THE 2055 01:34:18,417 --> 01:34:25,224 THERAPIES IN ADRENO LEUKO D 2056 01:34:25,224 --> 01:34:26,359 DYSTROPHY COMPARED BECAUSE IT 2057 01:34:26,359 --> 01:34:28,627 WAS TOO HARD TO ENROLL PATIENTS 2058 01:34:28,627 --> 01:34:29,895 FOR IT. 2059 01:34:29,895 --> 01:34:36,168 IT'S A DUAL-ARM STUDY? 2060 01:34:36,168 --> 01:34:36,435 MULTI-ARM. 2061 01:34:36,435 --> 01:34:39,004 WILL WE FOCUS ON ONE OR THE 2062 01:34:39,004 --> 01:34:40,706 OTHER AND CROSSOVER DESIGNS. 2063 01:34:40,706 --> 01:34:43,709 I'VE CONCLUDED SOME EXAMPLES. 2064 01:34:43,709 --> 01:34:46,045 WE TALKED ABOUT BRIEFLY RUN-IN 2065 01:34:46,045 --> 01:34:48,681 DESIGNS WHERE INSTEAD OF HAVING 2066 01:34:48,681 --> 01:34:50,383 A DEDICATED PLACEBO ARM WHICH 2067 01:34:50,383 --> 01:34:51,250 SPOOKS FAMILIES AND PARTICIPATES 2068 01:34:51,250 --> 01:34:53,219 FROM JOINING IN A STUDY, 2069 01:34:53,219 --> 01:34:54,153 ALLOWING FOR A RUN IN WHERE YOU 2070 01:34:54,153 --> 01:34:56,021 GET RANDOMIZED TO A MEDICATION 2071 01:34:56,021 --> 01:35:00,259 AT THE END AS OFTEN A WAY TO 2072 01:35:00,259 --> 01:35:01,127 SELL PARTICIPATION TO FAMILIES 2073 01:35:01,127 --> 01:35:04,463 AND THIS SHOWS THE ABILITY AND 2074 01:35:04,463 --> 01:35:06,632 FLEXIBILITY OF AN R61, R33 2075 01:35:06,632 --> 01:35:08,033 MECHANISM WHERE IF WE'RE NOT 2076 01:35:08,033 --> 01:35:09,635 SURE WHAT MEDICINE MAY BE THE 2077 01:35:09,635 --> 01:35:12,438 BEST OR SAFEST, THE R33 PHASE 2078 01:35:12,438 --> 01:35:14,140 ALLOW THE ABILITY TO EXTRACT ONE 2079 01:35:14,140 --> 01:35:16,542 OF THE ARMS IF IT'S NOT WORKING 2080 01:35:16,542 --> 01:35:21,414 THERE'S SAFETY SIGNAL OR POOR 2081 01:35:21,414 --> 01:35:21,914 EFFICACY SIGNAL AS WELL. 2082 01:35:21,914 --> 01:35:24,517 AGAIN WHEN WE LOOK AT PROTOCOL 2083 01:35:24,517 --> 01:35:28,921 DEVELOPMENT WE HAVE TO FIND 2084 01:35:28,921 --> 01:35:30,055 SOMETHING MEANINGFUL TO 2085 01:35:30,055 --> 01:35:31,190 INDIVIDUALS AND MAKE SURE IT'S 2086 01:35:31,190 --> 01:35:34,160 WITHIN THE CONTEXT OF THE STUDY 2087 01:35:34,160 --> 01:35:35,761 DESIGN. 2088 01:35:35,761 --> 01:35:38,164 ONE INITIAL CONSIDERATION IS HOW 2089 01:35:38,164 --> 01:35:39,331 LONG DOES IT TAKE FOR 2090 01:35:39,331 --> 01:35:40,299 MEDICATIONS TO WORK? 2091 01:35:40,299 --> 01:35:42,735 FOR IGIG WE HAD DID DATA. 2092 01:35:42,735 --> 01:35:47,873 BY THERE'S MONTHS YOU SHOULD SEE 2093 01:35:47,873 --> 01:35:58,417 AN EFFECT BUT WIN OTHERS WE HAD 2094 01:36:02,688 --> 01:36:04,290 TO LOOK AT INDIVIDUALS. 2095 01:36:04,290 --> 01:36:07,593 PAIRING UP CALENDAR VISITS AND 2096 01:36:07,593 --> 01:36:08,627 LAB DRAWS AND MODIFYING THINGS 2097 01:36:08,627 --> 01:36:11,030 TO MAKE SURE IT'S NOT AN 2098 01:36:11,030 --> 01:36:12,998 ADDITIONAL BURDEN TO FAMILIES, 2099 01:36:12,998 --> 01:36:15,134 CAREGIVERS AND PARTICIPANTS AND 2100 01:36:15,134 --> 01:36:16,268 ALSO COLLECTING THE HIGHEST 2101 01:36:16,268 --> 01:36:17,837 QUALITY DATA. 2102 01:36:17,837 --> 01:36:20,272 I THINK THIS THE MOST IMPORTANT 2103 01:36:20,272 --> 01:36:21,841 SLIDES FOR PAIRING CLINICIANS, 2104 01:36:21,841 --> 01:36:24,243 SCIENTISTS AND BASIC SCIENTISTS. 2105 01:36:24,243 --> 01:36:25,711 WHILE THERE IS A LOT OF 2106 01:36:25,711 --> 01:36:29,081 ENTHUSIASM FOR STUDIES, A 2107 01:36:29,081 --> 01:36:30,483 CLINICIAN IS VERY DIFFERENT THAN 2108 01:36:30,483 --> 01:36:32,952 A SCIENTIST OR A PHYSICIAN 2109 01:36:32,952 --> 01:36:35,621 SCIENTIST AND SO FINDING TIME OR 2110 01:36:35,621 --> 01:36:38,190 THAT PERCENT FTE THE BASIC 2111 01:36:38,190 --> 01:36:43,028 SCIENTIST HAVE TO KAPE HEAR -- 2112 01:36:43,028 --> 01:36:46,265 HEARING ABOUT IS IMPORTANT FOR 2113 01:36:46,265 --> 01:36:50,836 GETTING PHYSICIANS TO 2114 01:36:50,836 --> 01:36:54,139 PARTICIPATE OR AN A SCREEN ARE 2115 01:36:54,139 --> 01:36:58,077 OR SOMEONE DOING A NEURO LOGIC 2116 01:36:58,077 --> 01:36:59,111 EXAMINATION AND IS THIS FEASIBLE 2117 01:36:59,111 --> 01:37:00,112 AND TRANSLATABLE TO THE 2118 01:37:00,112 --> 01:37:01,514 POPULATION AND DO YOU HAVE THE 2119 01:37:01,514 --> 01:37:04,617 TIME AND WHAT DAYS DO YOU HAVE 2120 01:37:04,617 --> 01:37:06,318 TIME. 2121 01:37:06,318 --> 01:37:10,623 FOR INSTANCE, A .05 FTE FOR A 2122 01:37:10,623 --> 01:37:12,157 CLINICIAN MAY NOT BE ENOUGH FOR 2123 01:37:12,157 --> 01:37:13,359 THEM TO PARTICIPATE MEANINGFULLY 2124 01:37:13,359 --> 01:37:15,961 IN THE TRIAL AND HAVING THE 2125 01:37:15,961 --> 01:37:18,697 CONVERSATIONS EARLY IS TO THE 2126 01:37:18,697 --> 01:37:19,431 BETTERMENT OF THE CLINICAL 2127 01:37:19,431 --> 01:37:19,632 TRIAL. 2128 01:37:19,632 --> 01:37:21,700 THE OTHER PIECE OF THIS TOO AND 2129 01:37:21,700 --> 01:37:23,002 THIS IS SOMETHING AS A CLINICIAN 2130 01:37:23,002 --> 01:37:24,803 AND PHYSICIAN SCIENTIST I DON'T 2131 01:37:24,803 --> 01:37:26,505 THINK ABOUT THIS AS MUCH BUT OU 2132 01:37:26,505 --> 01:37:28,073 DO YOU MAKE SURE THESE CLINICAL 2133 01:37:28,073 --> 01:37:29,808 TRIALS BEING RUN ARE ACTUALLY 2134 01:37:29,808 --> 01:37:31,777 GETTING ADDITIONAL DATA WE CAN 2135 01:37:31,777 --> 01:37:34,613 USE TO GENERATE EITHER 2136 01:37:34,613 --> 01:37:36,048 ADDITIONAL CLINICAL TRIALS OR 2137 01:37:36,048 --> 01:37:37,216 SIDELINE BASIC SCIENCE 2138 01:37:37,216 --> 01:37:38,050 INVESTIGATIONS. 2139 01:37:38,050 --> 01:37:40,019 THIS IS ONE OF THE MORE EXCITING 2140 01:37:40,019 --> 01:37:41,387 THINGS IS PAIRING WITH 2141 01:37:41,387 --> 01:37:43,756 DR. ESPINOZA AN EXPERT IN THE 2142 01:37:43,756 --> 01:37:46,158 OMICS YOU KEEP HEARING ABOUT IN 2143 01:37:46,158 --> 01:37:46,892 THE CONFERENCE IS PAIRING THEM 2144 01:37:46,892 --> 01:37:48,594 WHILE WE'RE RUNNING A CLINICAL 2145 01:37:48,594 --> 01:37:50,563 TRIAL SO WE CAN USE THEM AT A 2146 01:37:50,563 --> 01:37:51,897 LATER TIME POINT TO EITHER WORK 2147 01:37:51,897 --> 01:37:54,667 TO HAVE BETTER INCLUSION, 2148 01:37:54,667 --> 01:37:55,568 EXCLUSION CRITERIA FOR CLINICAL 2149 01:37:55,568 --> 01:37:56,835 TRIAL, MAKE SURE THE 2150 01:37:56,835 --> 01:37:58,971 THERAPEUTICS ARE IVE AND GOING 2151 01:37:58,971 --> 01:38:00,940 TO THE PATIENTS THAT WOULD 2152 01:38:00,940 --> 01:38:01,173 BENEFIT. 2153 01:38:01,173 --> 01:38:03,342 THE OTHER PLUG I'LL ADD IS YOU 2154 01:38:03,342 --> 01:38:04,610 CAN ADD PSYCHOLOGICAL 2155 01:38:04,610 --> 01:38:06,211 ASSESSMENT, SURVEYS, QUALITY OF 2156 01:38:06,211 --> 01:38:09,782 LIFE, EXTRA IMAGING STUDY, 2157 01:38:09,782 --> 01:38:11,050 ANCILLARY TESTS. 2158 01:38:11,050 --> 01:38:13,419 THEY'RE EASY, NONINVASIVE IN 2159 01:38:13,419 --> 01:38:15,454 SOME SITUATIONS TO RUN BUT CAN 2160 01:38:15,454 --> 01:38:19,558 PROVIDE DATA FOR MONITORING IN 2161 01:38:19,558 --> 01:38:20,626 THE LONG TERM AS WELL. 2162 01:38:20,626 --> 01:38:22,127 WHILE WE TALK ABOUT DOWN 2163 01:38:22,127 --> 01:38:22,728 SYNDROME IN THE INCLUDE 2164 01:38:22,728 --> 01:38:24,430 INITIATIVE, THE REAL GOAL IS TO 2165 01:38:24,430 --> 01:38:26,565 GET TO PERSONALIZED MEDICINE. 2166 01:38:26,565 --> 01:38:28,734 WE HAVE THE ONE SIZE FITS ALL 2167 01:38:28,734 --> 01:38:30,402 BECAUSE THAT'S THE BEST DATA WE 2168 01:38:30,402 --> 01:38:31,971 HAVE AND ULTIMATELY WHEN WE LOOK 2169 01:38:31,971 --> 01:38:33,105 AT WHAT IS INCLUDE GOING TO LOOK 2170 01:38:33,105 --> 01:38:34,807 AT IN THE NEXT FIVE YEARS, THE 2171 01:38:34,807 --> 01:38:37,209 HOPE IS WE CAN BE SAYING, HAVE 2172 01:38:37,209 --> 01:38:39,378 YOU OSA AND DOWN SYNDROME 2173 01:38:39,378 --> 01:38:40,512 REGRESSION DISORDER. 2174 01:38:40,512 --> 01:38:42,781 THIS IS THE PREFERRED TREATMENT 2175 01:38:42,781 --> 01:38:43,349 FOR YOU. 2176 01:38:43,349 --> 01:38:45,651 WE HAVE A POSITIVE RATE OF 90% 2177 01:38:45,651 --> 01:38:48,320 OF S SHOULD BE RESPONDING TO 2178 01:38:48,320 --> 01:38:49,421 THIS THERAPY WITH YOUR 2179 01:38:49,421 --> 01:38:53,859 PARTICULAR PROFILE. 2180 01:38:53,859 --> 01:38:56,128 WE THINK WITH THE PATIENTS, 2181 01:38:56,128 --> 01:38:58,831 CAREGIVERS AND THE PARENTS. 2182 01:38:58,831 --> 01:39:00,833 THIS IS A CRITICALLY IMPORTANT 2183 01:39:00,833 --> 01:39:01,266 THING. 2184 01:39:01,266 --> 01:39:03,135 WE DON'T WANT TO ADD BURDEN BY 2185 01:39:03,135 --> 01:39:04,637 PARTICIPATING IN A CLINICAL 2186 01:39:04,637 --> 01:39:05,104 TRIAL. 2187 01:39:05,104 --> 01:39:07,139 WE NEED TO MAKE IT EASY AND 2188 01:39:07,139 --> 01:39:08,674 FINANCIALLY SOLVABLE AS WELL. 2189 01:39:08,674 --> 01:39:09,675 THE TIMING MATTER. 2190 01:39:09,675 --> 01:39:11,510 I TALKED ABOUT THIS WITH OUR 2191 01:39:11,510 --> 01:39:12,511 CLINICIANS NOT EVERYBODY CAN GET 2192 01:39:12,511 --> 01:39:13,512 ALL THE TESTS COORDINATED ON THE 2193 01:39:13,512 --> 01:39:14,213 SAME DAY. 2194 01:39:14,213 --> 01:39:20,886 WE SEE THIS WITH OTHER STUDIES 2195 01:39:20,886 --> 01:39:26,325 IF AN FMRI AND MRI PUNCTURE ARE 2196 01:39:26,325 --> 01:39:28,160 NEED TO BE DONE IN THE SAME DAY 2197 01:39:28,160 --> 01:39:30,429 THE MOON HAS TO BE ALIGNED AND 2198 01:39:30,429 --> 01:39:31,430 EVERYTHING SOUNDS BETTER ON 2199 01:39:31,430 --> 01:39:31,630 PAPER. 2200 01:39:31,630 --> 01:39:34,967 IN REALITY IT MAY BE DIFFERENT. 2201 01:39:34,967 --> 01:39:37,970 THOUGH WE'RE FIND THE LAB IS NOT 2202 01:39:37,970 --> 01:39:40,939 ALWAYS 100% OF THE TIME THE MOST 2203 01:39:40,939 --> 01:39:42,207 CONSISTENT PLACE WE REALIZE THIS 2204 01:39:42,207 --> 01:39:43,909 IN OUR REGRESSION TRIAL WHERE I 2205 01:39:43,909 --> 01:39:45,811 TALKED ABOUT SOME OF OUR 2206 01:39:45,811 --> 01:39:47,713 PATIENTS ARE DELUSIONAL, 2207 01:39:47,713 --> 01:39:54,219 PSYCHOTIC ANDAGE TATE WILLED -- 2208 01:39:54,219 --> 01:39:56,055 AND AGITATED. 2209 01:39:56,055 --> 01:39:58,157 THE R61 MECHANISM IS IDEAL TO 2210 01:39:58,157 --> 01:40:00,959 GET THE KINKS OUT EARLY ON IN A 2211 01:40:00,959 --> 01:40:02,695 LIMITED NUMBER OF PATIENTS AND 2212 01:40:02,695 --> 01:40:03,996 MOVE FORWARD WITH THE MOST 2213 01:40:03,996 --> 01:40:04,963 OPTIMIZED PROTOCOL IN THE 2214 01:40:04,963 --> 01:40:05,230 FUTURE. 2215 01:40:05,230 --> 01:40:07,566 WITH THAT I'LL HAVE OUR NEXT 2216 01:40:07,566 --> 01:40:08,133 SPEAKER TRANSITION OVER BUT 2217 01:40:08,133 --> 01:40:13,372 THANK YOU AGAIN. 2218 01:40:13,372 --> 01:40:14,373 >> THANK YOU. 2219 01:40:14,373 --> 01:40:20,746 NEXT UP WE'LL HAVE DR. LAUREN 2220 01:40:20,746 --> 01:40:23,615 TOMI FOR THE TOP FIVE TIPS IN 2221 01:40:23,615 --> 01:40:24,316 DOWN SYNDROME RESEARCH AND 2222 01:40:24,316 --> 01:40:25,718 READINESS. 2223 01:40:25,718 --> 01:40:27,319 >> I GET TO THE BRIDGE OF 2224 01:40:27,319 --> 01:40:28,620 TALKING ABOUT THE CLINICAL 2225 01:40:28,620 --> 01:40:30,122 TRIALS TO LATER ABOUT TO GET IN 2226 01:40:30,122 --> 01:40:31,290 THE COMMUNITY ASPECT AND I'M 2227 01:40:31,290 --> 01:40:33,459 BRIDGING THAT AND HOW DO WE 2228 01:40:33,459 --> 01:40:34,660 PREPARE CLINICAL TRIALS MORE 2229 01:40:34,660 --> 01:40:37,262 FROM THE COMMUNITY ENGAGED END. 2230 01:40:37,262 --> 01:40:40,232 SO YOU WANT TO CONDUCT A 2231 01:40:40,232 --> 01:40:40,599 CLINICAL TRIAL. 2232 01:40:40,599 --> 01:40:42,501 WHAT ARE THINGS YOU NEED TO 2233 01:40:42,501 --> 01:40:44,636 THINK ABOUT BEFORE DIVING INTO 2234 01:40:44,636 --> 01:40:44,837 THIS. 2235 01:40:44,837 --> 01:40:46,638 FOR BACKGROUND I'VE BEEN 2236 01:40:46,638 --> 01:40:47,940 CONDUCTING CLINICAL TRIALS IN 2237 01:40:47,940 --> 01:40:48,807 INDIVIDUALS WITH DOWN SYNDROME 2238 01:40:48,807 --> 01:40:50,442 FOR ABOUT 13 YEARS. 2239 01:40:50,442 --> 01:40:55,414 I MOSTLY DO NON-PHARMACOLOGIC 2240 01:40:55,414 --> 01:40:55,914 INTERVENTIONS BASED ON 2241 01:40:55,914 --> 01:40:57,416 LIFESTYLE, DIET, NUTRITION AND 2242 01:40:57,416 --> 01:40:59,451 WE'VE BEEN BRIDGING INTO THE 2243 01:40:59,451 --> 01:41:00,419 PHARMACOLOGICAL SPACE IN THE 2244 01:41:00,419 --> 01:41:04,656 PAST FEW YEARS AND HOW DO WE 2245 01:41:04,656 --> 01:41:15,067 COMBINE THE MECHANISMS. 2246 01:41:18,704 --> 01:41:21,340 THE TOP FIVE TIPS. 2247 01:41:21,340 --> 01:41:23,041 BUILD YOUR COMMUNITY ADVISORY 2248 01:41:23,041 --> 01:41:23,342 BOARD. 2249 01:41:23,342 --> 01:41:26,879 WHAT IS A COMMUNITY ADVISORY 2250 01:41:26,879 --> 01:41:27,079 BOARD? 2251 01:41:27,079 --> 01:41:28,580 IN OUR MIND IT GUIDES EVERYTHING 2252 01:41:28,580 --> 01:41:29,148 WE DO. 2253 01:41:29,148 --> 01:41:31,016 WE BRING INDIVIDUALS AND 2254 01:41:31,016 --> 01:41:32,284 SELF-ADVOCATES WITH DOWN 2255 01:41:32,284 --> 01:41:35,721 SYNDROME IN AND CAREGIVERS AND 2256 01:41:35,721 --> 01:41:37,389 INDIVIDUALS WORKING IN OUR 2257 01:41:37,389 --> 01:41:38,290 COMMUNITY AND OUR COMMUNITY 2258 01:41:38,290 --> 01:41:39,658 ORGANIZATIONS LIKE OUR DOWN 2259 01:41:39,658 --> 01:41:40,793 SYNDROME GROUP AND BUILD A PANEL 2260 01:41:40,793 --> 01:41:43,362 AND BOARD WHO WE RELY ON 2261 01:41:43,362 --> 01:41:43,662 HEAVILY. 2262 01:41:43,662 --> 01:41:44,663 THEY'RE OUR PARTNERS IN 2263 01:41:44,663 --> 01:41:44,930 RESEARCH. 2264 01:41:44,930 --> 01:41:47,065 I THINK THIS PARTNERSHIP IS 2265 01:41:47,065 --> 01:41:47,699 REALLY IMPORTANT TO US BECAUSE 2266 01:41:47,699 --> 01:41:50,636 THEY GUIDE EVERYTHING WE DO. 2267 01:41:50,636 --> 01:41:54,039 EVEN WHEN WE COME UP WITH AN 2268 01:41:54,039 --> 01:41:56,909 IDEA FOR A GRANT OR AN IDEA TO 2269 01:41:56,909 --> 01:42:04,650 STUDY WE ASK WHAT DO YOU THINK 2270 01:42:04,650 --> 01:42:07,686 ABOUT THIS AND WE GET GOOD 2271 01:42:07,686 --> 01:42:09,588 FEEDBACK AND GET FEEDBACK LIKE 2272 01:42:09,588 --> 01:42:10,656 PROTOCOL AND TELL US WHAT YOU 2273 01:42:10,656 --> 01:42:11,990 THINK AND WHAT IS CRAZY ON HERE 2274 01:42:11,990 --> 01:42:14,226 WE'RE TRYING IT GET YOU TO DO 2275 01:42:14,226 --> 01:42:15,794 AND WHAT ARE WE NOT THINKING 2276 01:42:15,794 --> 01:42:17,229 ABOUT AND THEY HELP GUIDE IT. 2277 01:42:17,229 --> 01:42:20,632 BEING IN SOME OF THE BOARDS 2278 01:42:20,632 --> 01:42:26,471 RECENTLY WITH ACTC-DS AND ABC-DS 2279 01:42:26,471 --> 01:42:30,042 AND WE'VE ARE TRYING TO INCLUDE 2280 01:42:30,042 --> 01:42:33,412 WILL HAVE INDIVIDUALS OF COLOR 2281 01:42:33,412 --> 01:42:35,547 AND DIFFERENT AGES AND NOT THE 2282 01:42:35,547 --> 01:42:36,849 STANDARD STOCK IMAGES WE CAN 2283 01:42:36,849 --> 01:42:37,115 FIND. 2284 01:42:37,115 --> 01:42:38,083 I THINK THOSE ARE HELPFUL 2285 01:42:38,083 --> 01:42:43,822 GETTING THIS GOING. 2286 01:42:43,822 --> 01:42:45,224 BUILDING THE RELATIONSHIP AND 2287 01:42:45,224 --> 01:42:46,091 BUILDING TRUST WITH THE 2288 01:42:46,091 --> 01:42:46,358 COMMUNITY. 2289 01:42:46,358 --> 01:42:48,360 THIS PROBABLY SHOULD HAVE BEEN 2290 01:42:48,360 --> 01:42:49,228 NUMBER ONE BUT THIS IS THE MOST 2291 01:42:49,228 --> 01:42:52,064 IMPORTANT THING YOU CAN DO. 2292 01:42:52,064 --> 01:42:53,332 RECRUITMENT FOR CLINICAL TRIALS 2293 01:42:53,332 --> 01:42:53,866 IS ALMOST NEAR IMPOSSIBLE 2294 01:42:53,866 --> 01:42:55,067 WITHOUT TRUST. 2295 01:42:55,067 --> 01:42:57,870 YOU WANT TO GO IN AND WANT TO BE 2296 01:42:57,870 --> 01:42:58,303 EVERYONE'S PARTNER. 2297 01:42:58,303 --> 01:43:00,005 THEY WANT TO KNOW YOU HAVE THEIR 2298 01:43:00,005 --> 01:43:01,139 BEST INTEREST IN MIND. 2299 01:43:01,139 --> 01:43:02,341 WE SPEND A LOT OF TIME 2300 01:43:02,341 --> 01:43:08,413 DEVELOPING PARTNERSHIPS WITH OUR 2301 01:43:08,413 --> 01:43:08,881 LOCAL DOWN SYNDROME 2302 01:43:08,881 --> 01:43:10,549 ORGANIZATIONS AND CLINICS. 2303 01:43:10,549 --> 01:43:12,684 IT'S NOT PARTNERSHIP NOT HEY, 2304 01:43:12,684 --> 01:43:15,520 CAN YOU RECRUIT FOR ME BUT WE'RE 2305 01:43:15,520 --> 01:43:16,989 A PARTNER AND IN THIS TOGETHER 2306 01:43:16,989 --> 01:43:21,393 AND WORK ON THAT MAKING IT 2307 01:43:21,393 --> 01:43:23,061 MUTUALLY BENEFICIAL. 2308 01:43:23,061 --> 01:43:25,530 AND WE HAVE HAD OUR HEALTHY 2309 01:43:25,530 --> 01:43:26,632 ALLIANCE IN KANSAS CITY. 2310 01:43:26,632 --> 01:43:28,901 THIS IS A GROUP OF US FROM K.U. 2311 01:43:28,901 --> 01:43:31,069 MED AND INDIVIDUALS FROM SPECIAL 2312 01:43:31,069 --> 01:43:32,471 OLYMPICS AND OUR DOWN SYNDROME 2313 01:43:32,471 --> 01:43:33,438 INNOVATIONS GROUP THAT PARTNER 2314 01:43:33,438 --> 01:43:35,874 IT TOGETHER FOCUSSING ON HOW CAN 2315 01:43:35,874 --> 01:43:39,711 WE IMPROVE THE HEALTH AND WELL 2316 01:43:39,711 --> 01:43:41,013 BEING AND WE HOST EVENTS. 2317 01:43:41,013 --> 01:43:44,816 THIS IS ONE A COUPLE WEEKS AGO 2318 01:43:44,816 --> 01:43:45,884 FOR DOWN SYNDROME DAY AND WE 2319 01:43:45,884 --> 01:43:49,388 BROUGHT PEOPLE IN AND DID FUN 2320 01:43:49,388 --> 01:43:51,089 PHYSICAL ACTIVITY TOGETHER AND 2321 01:43:51,089 --> 01:43:52,224 ALSO HAD SELF-ADVOCATES TALK 2322 01:43:52,224 --> 01:43:53,392 ABOUT WHERE THEY ARE AND 2323 01:43:53,392 --> 01:43:55,360 STARTING THEIR OWN BUSINESSES 2324 01:43:55,360 --> 01:43:56,428 AND BEING MORE EMPOWERING. 2325 01:43:56,428 --> 01:43:58,230 THIS IS GOOD FOR FAMILIES OF 2326 01:43:58,230 --> 01:43:59,231 YOUNGER INDIVIDUALS WHO GET TO 2327 01:43:59,231 --> 01:44:02,534 COME IN AND HEAR ABOUT ALL THE 2328 01:44:02,534 --> 01:44:03,235 WONDERFUL THINGS THAT THEIR 2329 01:44:03,235 --> 01:44:04,736 CHILD WILL ONE DAY BE ABLE TO 2330 01:44:04,736 --> 01:44:05,203 DO. 2331 01:44:05,203 --> 01:44:07,205 WE DON'T TALK ABOUT RESEARCH. 2332 01:44:07,205 --> 01:44:07,873 WE'RE JUST THERE. 2333 01:44:07,873 --> 01:44:09,408 WE'RE A PARTNER IN THE COMMUNITY 2334 01:44:09,408 --> 01:44:10,876 AND WE BUILD THAT TRUST SO LATER 2335 01:44:10,876 --> 01:44:12,477 WHEN WE'RE LIKE, WE'RE ALSO 2336 01:44:12,477 --> 01:44:14,112 DOING THIS RESEARCH TRIAL, 2337 01:44:14,112 --> 01:44:16,148 THEY'RE LIKE OH, OKAY, WE TRUST 2338 01:44:16,148 --> 01:44:17,115 YOU. 2339 01:44:17,115 --> 01:44:18,684 WE BELIEVE YOU HAVE OUR BEST 2340 01:44:18,684 --> 01:44:19,251 INTEREST AT HEART. 2341 01:44:19,251 --> 01:44:20,986 WE'LL COME IN. 2342 01:44:20,986 --> 01:44:22,955 WE MAKE SURE TO ATTEND EVENTS 2343 01:44:22,955 --> 01:44:24,823 AND OUT HOSTING OUR OWN EVENTS. 2344 01:44:24,823 --> 01:44:28,493 I'LL SHOW A VIDEO FROM A FUN 2345 01:44:28,493 --> 01:44:29,428 EVENT FROM A COUPLE MONTHS AGO 2346 01:44:29,428 --> 01:44:31,196 AND THIS IS OUR COMMUNITY AND WE 2347 01:44:31,196 --> 01:44:31,997 WANT EVERYONE TO KNOW WE'RE A 2348 01:44:31,997 --> 01:44:35,467 PART OF THAT COMMUNITY. 2349 01:44:35,467 --> 01:44:37,602 WE CONSIDER SENDING OUT NEWS 2350 01:44:37,602 --> 01:44:37,903 LETTERS. 2351 01:44:37,903 --> 01:44:41,473 WE SEND OUT A NEWSLETTER TO OUR 2352 01:44:41,473 --> 01:44:44,176 RESEARCH REGISTRY WITH TIPS OF 2353 01:44:44,176 --> 01:44:46,278 WHAT'S GOING ON RIGHT NOW. 2354 01:44:46,278 --> 01:44:48,714 EVENTS THAT ARE HAPPENING AND 2355 01:44:48,714 --> 01:44:51,683 PUT RESEARCH INFO GRAPHICS AND 2356 01:44:51,683 --> 01:44:53,118 SOMEONE IN A TRIAL CAN SEE 2357 01:44:53,118 --> 01:44:55,087 RESULTS IN A WAY THEY 2358 01:44:55,087 --> 01:44:55,387 UNDERSTAND. 2359 01:44:55,387 --> 01:44:57,222 AND WE CAN LET THEM KNOW FUTURE 2360 01:44:57,222 --> 01:44:57,556 OPPORTUNITIES. 2361 01:44:57,556 --> 01:44:59,758 WE RELY ON OUR COMMUNITIES 2362 01:44:59,758 --> 01:45:00,625 ADVISORY BOARD TOO. 2363 01:45:00,625 --> 01:45:03,762 THEY HELP SPREAD THE WORD AND 2364 01:45:03,762 --> 01:45:04,663 MAKE SURE THAT WE'RE GETTING 2365 01:45:04,663 --> 01:45:07,599 INTO NEW AREAS. 2366 01:45:07,599 --> 01:45:11,937 ONE AREA WE REALIZED IS WE'RE 2367 01:45:11,937 --> 01:45:15,607 STRUGGLING TO GET IN THE UNDER 2368 01:45:15,607 --> 01:45:18,010 SERVED AREAS AND BRING IN PEOPLE 2369 01:45:18,010 --> 01:45:21,413 AND WE'RE IN KANSAS AND MOST 2370 01:45:21,413 --> 01:45:23,515 PEOPLE THINK OF FARMLAND AND 2371 01:45:23,515 --> 01:45:30,222 COWS AND HOW DO WE GET IN RURAL 2372 01:45:30,222 --> 01:45:30,856 POPULATIONS INVOLVED AND SERVE 2373 01:45:30,856 --> 01:45:31,656 HISPANIC POPULATION AND WE'RE 2374 01:45:31,656 --> 01:45:34,092 NOT ABLE TO RECRUIT THEM AND 2375 01:45:34,092 --> 01:45:35,627 THAT'S FUTURE DIRECTIONS WHERE 2376 01:45:35,627 --> 01:45:37,496 WE'RE TRYING TO GET NOW AND HOW 2377 01:45:37,496 --> 01:45:40,599 DO WE BUILD THE RIGHT 2378 01:45:40,599 --> 01:45:41,299 RELATIONSHIPS AND ESTABLISH THE 2379 01:45:41,299 --> 01:45:41,767 TRUST BEFORE STARTING 2380 01:45:41,767 --> 01:45:43,869 RECRUITMENT? 2381 01:45:43,869 --> 01:45:46,004 GETTING INTO INTERVENTION 2382 01:45:46,004 --> 01:45:47,039 DEVELOPMENT AND DELIVERY, YOU 2383 01:45:47,039 --> 01:45:48,740 WANT TO MAKE SURE YOU ADAPT OR 2384 01:45:48,740 --> 01:45:49,841 DEVELOP YOUR INTERVENTION 2385 01:45:49,841 --> 01:45:51,977 CONSIDERING THE NEEDS OF 2386 01:45:51,977 --> 01:45:53,245 INDIVIDUALS WITH DOWN SYNDROME. 2387 01:45:53,245 --> 01:45:54,413 ONE, CONSULT WITH YOUR COMMUNITY 2388 01:45:54,413 --> 01:45:55,680 ADVISORY BOARD. 2389 01:45:55,680 --> 01:45:57,516 I'LL GO BACK TO THAT EVERY 2390 01:45:57,516 --> 01:45:57,783 SLIDE. 2391 01:45:57,783 --> 01:45:58,984 THAT'S IMPORTANT AND WHAT DO 2392 01:45:58,984 --> 01:46:00,819 THEY WANT AND NEED AND WHAT'S 2393 01:46:00,819 --> 01:46:01,620 IMPORTANT TO THEM? 2394 01:46:01,620 --> 01:46:03,221 THIS IS A GOOD EXAMPLE. 2395 01:46:03,221 --> 01:46:06,758 A FEW YEARS AGO WE WANTED TO RUN 2396 01:46:06,758 --> 01:46:11,596 A TRIAL WHICH IS A WEIGHT LOSS 2397 01:46:11,596 --> 01:46:13,031 MEDICATION TO HELP DIABETES. 2398 01:46:13,031 --> 01:46:13,999 WE BROUGHT THEM IN AND SAID WHAT 2399 01:46:13,999 --> 01:46:16,034 WOULD YOU THINK OF DOING THIS 2400 01:46:16,034 --> 01:46:17,569 DRUG TRIAL? 2401 01:46:17,569 --> 01:46:19,571 WHAT WOULD YOU THINK OF DOING 2402 01:46:19,571 --> 01:46:20,705 THIS TO HELP WITH WEIGHT LOSS. 2403 01:46:20,705 --> 01:46:23,408 THE FAMILIES WERE LIKE, THAT'S 2404 01:46:23,408 --> 01:46:27,813 GREAT BUT WHAT WE'RE WORRIED 2405 01:46:27,813 --> 01:46:29,047 ABOUT IS LONG TERM MAINTENANCE 2406 01:46:29,047 --> 01:46:29,948 AND HEALTH. 2407 01:46:29,948 --> 01:46:33,418 WE CALL IT THE POTATO PEELER 2408 01:46:33,418 --> 01:46:35,220 STUDY BECAUSE PARENTS SAID 2409 01:46:35,220 --> 01:46:36,621 THAT'S WONDERFUL AND GLAD 2410 01:46:36,621 --> 01:46:40,092 THERE'S MEDICATIONS. 2411 01:46:40,092 --> 01:46:43,895 I WANT TO KNOW HOW TO TEACH MY 2412 01:46:43,895 --> 01:46:46,298 CHILD TO COOK HEALTHY FOODS IN 2413 01:46:46,298 --> 01:46:50,402 THE KITCHEN AND I'M TERRIFIED TO 2414 01:46:50,402 --> 01:46:53,271 THEM BE AROUND A POTATO PEELER 2415 01:46:53,271 --> 01:46:56,508 AND STOVE AND HOW CAN THEY LET 2416 01:46:56,508 --> 01:47:01,413 THEM LIVE INDEPENDENTLY AND 2417 01:47:01,413 --> 01:47:04,549 SCRAPPED THE IDEA AND DEVELOPED 2418 01:47:04,549 --> 01:47:05,650 THIS OTHER TRIAL TEACHING 2419 01:47:05,650 --> 01:47:08,186 HEALTHY COOKING SKILLS AND THIS 2420 01:47:08,186 --> 01:47:09,888 IS A PARTICIPANT MAKING HIS 2421 01:47:09,888 --> 01:47:11,756 ENERGY BALLS PART OF THE STUDY. 2422 01:47:11,756 --> 01:47:13,358 BUT OUR ADVISORY BOARD WAS 2423 01:47:13,358 --> 01:47:14,593 BASICALLY THAT'S A WONDERFUL 2424 01:47:14,593 --> 01:47:15,694 TRIAL BUT THIS IS WHAT WE WANT. 2425 01:47:15,694 --> 01:47:22,134 SO WE WENT THAT WAY. 2426 01:47:22,134 --> 01:47:24,736 YOU ALSO WANT TO CONSIDER THE 2427 01:47:24,736 --> 01:47:26,271 REETHD LEVEL OF YOUR AND MAKE IT 2428 01:47:26,271 --> 01:47:28,540 EASILY READABLE. 2429 01:47:28,540 --> 01:47:29,241 WE'LL BE PROVIDING WRITTEN 2430 01:47:29,241 --> 01:47:31,510 MATERIALS AS WELL AS VIDEO. 2431 01:47:31,510 --> 01:47:32,777 FOR PEOPLE WHO CAN'T READ AS 2432 01:47:32,777 --> 01:47:34,479 WELL HAVE A HARD TIME READING OR 2433 01:47:34,479 --> 01:47:35,647 HAVE DIFFERENT STYLES OF 2434 01:47:35,647 --> 01:47:37,382 LEARNING, WE'RE ACCOMMODATING 2435 01:47:37,382 --> 01:47:38,350 EVERYONE. 2436 01:47:38,350 --> 01:47:39,050 THIS TAKES TIME. 2437 01:47:39,050 --> 01:47:41,086 FOR EXAMPLE, WE'RE MAKING SOME 2438 01:47:41,086 --> 01:47:43,021 VIDEOS FOR OUR CLINICAL TRIAL WE 2439 01:47:43,021 --> 01:47:44,723 HAVE COMING UP HOPEFULLY 2440 01:47:44,723 --> 01:47:46,491 STARTING THIS FALL AND SPENT A 2441 01:47:46,491 --> 01:47:49,027 YEAR MAKING SCRIPTS AND MAKING 2442 01:47:49,027 --> 01:47:56,835 DEVELOPMENT AND WORKING WITH OUR 2443 01:47:56,835 --> 01:47:58,436 DEVELOPMENT PANEL AND MAKE SURE 2444 01:47:58,436 --> 01:48:00,939 THEY'RE REPRESENTATIVE OF OUR 2445 01:48:00,939 --> 01:48:02,507 POPULATION AND LOOK AT TRAVEL. 2446 01:48:02,507 --> 01:48:03,508 IT'S HARD. 2447 01:48:03,508 --> 01:48:05,043 IT'S HARD ON PARENTS AND 2448 01:48:05,043 --> 01:48:05,377 CAREGIVERS. 2449 01:48:05,377 --> 01:48:07,646 THEY DON'T WANT TO COME IN A 2450 01:48:07,646 --> 01:48:09,381 MEDICAL CENTER MULTIPLE TIMES A 2451 01:48:09,381 --> 01:48:10,949 YEAR BUT NOT IF YOU'RE LIKE, 2452 01:48:10,949 --> 01:48:12,884 HEY, WE NEED TO YOU COME IN 2453 01:48:12,884 --> 01:48:14,219 THREE DAYS IN A ROW OR HAVE TO 2454 01:48:14,219 --> 01:48:16,454 HAVE YOU ONCE A MONTH. 2455 01:48:16,454 --> 01:48:17,622 THAT REQUIRES SOMEONE TO TAKE 2456 01:48:17,622 --> 01:48:19,057 TIME OFF WORK IF YOU HAVE A JOB 2457 01:48:19,057 --> 01:48:20,725 AND MOST INDIVIDUALS EN OUR 2458 01:48:20,725 --> 01:48:21,693 COMMUNITY ARE PROUD OF THEIR 2459 01:48:21,693 --> 01:48:23,862 JOBS AN DON'T WANT TO TAKE TIME 2460 01:48:23,862 --> 01:48:24,062 AWAY. 2461 01:48:24,062 --> 01:48:25,397 YOU WANT TO MAKE SURE YOU'RE 2462 01:48:25,397 --> 01:48:26,865 MAKING IT FOR THE PARENTS THEY 2463 01:48:26,865 --> 01:48:28,967 CAN EASILY GET AWAY AND THEY CAN 2464 01:48:28,967 --> 01:48:29,534 AFFORD TO. 2465 01:48:29,534 --> 01:48:31,803 SOMETIMES COMING INTO A MEDICAL 2466 01:48:31,803 --> 01:48:34,206 CENTER OR MEDICAL FACILITY THAT 2467 01:48:34,206 --> 01:48:36,208 TAKES THEM REQUIRING A WHOLE DAY 2468 01:48:36,208 --> 01:48:38,376 OFF WORK AND PAY AND HOW CAN YOU 2469 01:48:38,376 --> 01:48:40,478 ACCOMMODATE THAT AND ALLOW 2470 01:48:40,478 --> 01:48:45,217 PEOPLE TO COME IN ON WEEKENDS 2471 01:48:45,217 --> 01:48:47,786 AND WEEKDAYS AND PILOT THE 2472 01:48:47,786 --> 01:48:48,119 INTERVENTION. 2473 01:48:48,119 --> 01:48:50,188 YOU MAY THINK YOU HAVE A GREAT 2474 01:48:50,188 --> 01:48:52,290 IDEA AND THE R61s ARE DOING THIS 2475 01:48:52,290 --> 01:48:54,292 BUT SOMETIMES WHEN PUT INTO 2476 01:48:54,292 --> 01:48:55,727 PRACTICE YOU REALIZE OH, IT 2477 01:48:55,727 --> 01:48:56,895 WASN'T THAT GREAT OF AN IDEA OR 2478 01:48:56,895 --> 01:48:58,730 WHAT WE NEED TO CHANGE. 2479 01:48:58,730 --> 01:49:00,565 AS MUCH AS YOU CAN, PILOT, 2480 01:49:00,565 --> 01:49:02,000 PILOT, PILOT. 2481 01:49:02,000 --> 01:49:05,270 SOMETIMES WE DO PILOTS FOR OUR 2482 01:49:05,270 --> 01:49:06,838 PILOTS BUT IT HELPS ONCE YOUR 2483 01:49:06,838 --> 01:49:07,739 READY TO DEPLOY THE FINAL 2484 01:49:07,739 --> 01:49:11,376 PRODUCT IN A RANDOMIZED CONTROL 2485 01:49:11,376 --> 01:49:12,544 SETTING YOU KNOW IT'S READY TO 2486 01:49:12,544 --> 01:49:16,815 GO AND YOU'LL HAVE HIGH 2487 01:49:16,815 --> 01:49:17,415 ATTENTION AND ADHERENCE AND 2488 01:49:17,415 --> 01:49:19,351 TREENGS. 2489 01:49:19,351 --> 01:49:21,920 -- RETENTION. 2490 01:49:21,920 --> 01:49:24,456 TEST OUT OUR SUBSTANCE PROTOCOL 2491 01:49:24,456 --> 01:49:25,857 WITH INDIVIDUALS AND FIND OUT 2492 01:49:25,857 --> 01:49:26,324 WHAT'S FEASIBLE. 2493 01:49:26,324 --> 01:49:29,027 WE FOUND WE WANTED TO DO AGING 2494 01:49:29,027 --> 01:49:31,263 TRIAL AND WERE GOING DO PET 2495 01:49:31,263 --> 01:49:32,998 SCANS AND EVERYONE WAS LIKE 2496 01:49:32,998 --> 01:49:34,132 WHOA, WHOA, WHOA. 2497 01:49:34,132 --> 01:49:36,134 I DON'T THINK I WANT IT DO THAT. 2498 01:49:36,134 --> 01:49:38,837 IT'S LIKE, WELL, CAN WE GET 2499 01:49:38,837 --> 01:49:40,538 SIMILAR INFORMATION NOT DOING 2500 01:49:40,538 --> 01:49:40,739 THAT? 2501 01:49:40,739 --> 01:49:42,641 SO TALKING WITH THEM AND FINDING 2502 01:49:42,641 --> 01:49:44,376 OUT WHAT THEY DID AND DID NOT 2503 01:49:44,376 --> 01:49:45,043 WANT TO DO FOR THIS PARTICULAR 2504 01:49:45,043 --> 01:49:46,778 STUDY. 2505 01:49:46,778 --> 01:49:49,414 MAKE SURE YOU'RE STUDY TEAM IS 2506 01:49:49,414 --> 01:49:51,082 FAMILIAR IN CONDUCTING 2507 01:49:51,082 --> 01:49:53,518 ASSESSMENTS IN INDIVIDUALS WITH 2508 01:49:53,518 --> 01:49:54,886 DOWN SYNDROME. 2509 01:49:54,886 --> 01:49:57,422 WE ARE LUCKY ENOUGH TO HAVE 2510 01:49:57,422 --> 01:49:59,858 RETENTION BECAUSE WE HAVE THE 2511 01:49:59,858 --> 01:50:01,026 MOST INCREDIBLE TEAM WHO KNOWS 2512 01:50:01,026 --> 01:50:02,294 HOW TO MAKE SOMEONE FEEL WELCOME 2513 01:50:02,294 --> 01:50:04,829 AND APPRECIATED AND EXCITED AND 2514 01:50:04,829 --> 01:50:06,698 THEY'RE PART OF THE SCIENCE AND 2515 01:50:06,698 --> 01:50:07,432 THAT'S NOT SOMETHING EVERYONE 2516 01:50:07,432 --> 01:50:09,234 CAN DO. 2517 01:50:09,234 --> 01:50:11,536 THAT'S GOOD WHEN WE'RE HIRING 2518 01:50:11,536 --> 01:50:13,938 SOMETIMES IT'S NOT JUST ABOUT 2519 01:50:13,938 --> 01:50:15,106 BACKGROUND AND EDUCATION BUT 2520 01:50:15,106 --> 01:50:17,642 ABOUT PERSONALITY. 2521 01:50:17,642 --> 01:50:19,811 YOU CAN SEE IT WILL BE A GOOD 2522 01:50:19,811 --> 01:50:25,417 FIT AND MAKE IT EXCITING. 2523 01:50:25,417 --> 01:50:27,585 AND WE TALKED ABOUT IT'S HARD TO 2524 01:50:27,585 --> 01:50:28,887 FIND VALID ASSESSMENTS AND 2525 01:50:28,887 --> 01:50:31,723 SOMETIMES YOU HAVE TO DO YOUR 2526 01:50:31,723 --> 01:50:34,559 OWN VALIDATION PROCESS BUT BAD 2527 01:50:34,559 --> 01:50:35,994 SCIENCE IN IS BAD SCIENCE OUT. 2528 01:50:35,994 --> 01:50:37,095 IT'S HARD. 2529 01:50:37,095 --> 01:50:38,997 IF YOUR GOING TO SPEND MONEY 2530 01:50:38,997 --> 01:50:40,565 COLLECTING DATA YOU WANT TO 2531 01:50:40,565 --> 01:50:42,100 COLLECT DATA WE KNOW IS 2532 01:50:42,100 --> 01:50:42,367 ACCURATE. 2533 01:50:42,367 --> 01:50:43,968 ONE OTHER THING THAT'S HELPFUL 2534 01:50:43,968 --> 01:50:46,371 IS DEVELOPING SOCIAL STORIES 2535 01:50:46,371 --> 01:50:47,806 THAT CLEARLY SHOW WHAT 2536 01:50:47,806 --> 01:50:51,309 ASSESSMENTS WILL OCCUR OR WHAT 2537 01:50:51,309 --> 01:50:53,778 WILL HAPPEN WHEN SOMEONE'S 2538 01:50:53,778 --> 01:50:54,746 ENROLLED AND MAKE THEM 2539 01:50:54,746 --> 01:50:56,481 REPRESENTATIVE OF YOUR TARGET 2540 01:50:56,481 --> 01:50:58,016 POPULATION. 2541 01:50:58,016 --> 01:50:59,284 SOCIAL STORIES CAN BE AS LITTLE 2542 01:50:59,284 --> 01:51:00,018 OR AS MUCH AS YOU WANT. 2543 01:51:00,018 --> 01:51:02,721 THIS IS AN EXAMPLE OF ONE OF THE 2544 01:51:02,721 --> 01:51:10,395 ONES WE HAVE. 2545 01:51:10,395 --> 01:51:13,398 WE GAVE OUT A POWER POINT OF 2546 01:51:13,398 --> 01:51:15,400 WHAT WOULD HAPPEN WHEN SOMEONE 2547 01:51:15,400 --> 01:51:16,968 COMES IN THE LAB AND WHAT IT 2548 01:51:16,968 --> 01:51:18,069 WOULD LOOK LIKE AND EVERY 2549 01:51:18,069 --> 01:51:19,771 PROCESS THAT WOULD HAPPEN IN 2550 01:51:19,771 --> 01:51:20,071 BETWEEN. 2551 01:51:20,071 --> 01:51:23,341 AND I THINK THAT MAKES IT FOR 2552 01:51:23,341 --> 01:51:25,176 SOMEONE WITH A LOT OF ANXIETY OR 2553 01:51:25,176 --> 01:51:26,878 WORRIED ABOUT IT THEY'LL KNOW 2554 01:51:26,878 --> 01:51:28,012 THERE'S VIDEOS GOING ON RIGHT 2555 01:51:28,012 --> 01:51:29,047 NOW TOO WHERE YOU CAN MAKE A 2556 01:51:29,047 --> 01:51:31,449 WHOLE VIDEO AND FOLLOW SOMEONE 2557 01:51:31,449 --> 01:51:33,284 AND YOU KNOW EXACTLY WHAT'S 2558 01:51:33,284 --> 01:51:34,819 EXPECTED, WHAT YOU'LL SEE AND 2559 01:51:34,819 --> 01:51:37,389 MINIMIZES SOME OF THE FEAR YOU 2560 01:51:37,389 --> 01:51:42,961 MIGHT HAVE. 2561 01:51:42,961 --> 01:51:44,229 BUDGETS FOR RECRUITMENT. 2562 01:51:44,229 --> 01:51:47,098 I CANNOT OVERSTATE THIS ENOUGH. 2563 01:51:47,098 --> 01:51:49,801 THEY'LL SAY OUR CLINIC WILL FIND 2564 01:51:49,801 --> 01:51:52,070 PEOPLE AND NO, RECRUITMENT IS 2565 01:51:52,070 --> 01:51:52,804 HARD. 2566 01:51:52,804 --> 01:51:54,773 NEVER UNDERESTIMATE RECRUITMENT 2567 01:51:54,773 --> 01:51:56,741 NEEDS AND BUDGETING MONEY FOR 2568 01:51:56,741 --> 01:51:57,542 RECRUITMENT EVENTS AND PERSONNEL 2569 01:51:57,542 --> 01:51:58,910 AND MAKING SURE YOU HAVE 2570 01:51:58,910 --> 01:52:00,578 CONVENIENT PARTNERSHIPS, 2571 01:52:00,578 --> 01:52:02,013 COMMUNITY ADVISORY BOARDS. 2572 01:52:02,013 --> 01:52:03,715 I DIDN'T MENTION THIS EARLIER 2573 01:52:03,715 --> 01:52:04,349 BUT THOSE COMMUNITY ADVISORY 2574 01:52:04,349 --> 01:52:05,417 BOARDS YOU WANT TO PAY THEM. 2575 01:52:05,417 --> 01:52:10,155 THEY'RE PART OF YOUR STUDY AND 2576 01:52:10,155 --> 01:52:11,289 INTEGRAL THEY DESERVE TO GET 2577 01:52:11,289 --> 01:52:14,225 PAID FOR THEIR TIME AND THAT'S 2578 01:52:14,225 --> 01:52:16,828 SOMETHING TO CONSIDER WHEN DOING 2579 01:52:16,828 --> 01:52:26,337 THIS. 2580 01:52:26,337 --> 01:52:27,739 THIS WAS AN ICE CREAM SOCIAL 2581 01:52:27,739 --> 01:52:30,642 WITH OUR NEW ABATE TRIAL AND WE 2582 01:52:30,642 --> 01:52:34,446 HAD A LOCAL ICE CREAM GROUP THAT 2583 01:52:34,446 --> 01:52:36,881 ONLY EMPLOYEES INDIVIDUALS WITH 2584 01:52:36,881 --> 01:52:37,849 INTELLECTUAL DISABILITIES AND WE 2585 01:52:37,849 --> 01:52:39,150 HAD ICE CREAM AND THEN HAD A 2586 01:52:39,150 --> 01:52:40,151 DANCE PARTY. 2587 01:52:40,151 --> 01:52:43,121 THIS IS A FUN VIDEO OF EVERYONE 2588 01:52:43,121 --> 01:52:44,823 GETTING DOWN LITERALLY. 2589 01:52:44,823 --> 01:52:46,491 IT'S FUN AND I'M SAD IT'S NOT 2590 01:52:46,491 --> 01:52:47,859 GOING TO PLAY BUT WE HOSTED IT 2591 01:52:47,859 --> 01:52:57,335 IN OUR RESEARCH PHASE. 2592 01:52:57,335 --> 01:52:58,770 PEOPLE GOT FAMILIAR AND THEY 2593 01:52:58,770 --> 01:53:01,039 SAID IF I DO A STUDY AGAIN THIS 2594 01:53:01,039 --> 01:53:02,173 IS WHERE I'LL GO AND BE FAMILIAR 2595 01:53:02,173 --> 01:53:04,809 WITH THE ROOM AND MADE IT SO 2596 01:53:04,809 --> 01:53:07,312 YOU'RE REDUCING SOME ANXIETY. 2597 01:53:07,312 --> 01:53:10,548 I ALSO WANT TO PUT IN HONORABLE 2598 01:53:10,548 --> 01:53:10,815 MENTIONS. 2599 01:53:10,815 --> 01:53:12,550 IRB APPROVALS AND CONSENT 2600 01:53:12,550 --> 01:53:12,817 DOCUMENTS. 2601 01:53:12,817 --> 01:53:14,419 I WAS IN THE AGING AND 2602 01:53:14,419 --> 01:53:17,288 ALZHEIMER'S GROUP AND THIS CAME 2603 01:53:17,288 --> 01:53:18,690 UP A LOT YESTERDAY IN OUR 2604 01:53:18,690 --> 01:53:20,925 BREAKOUT SESSION. 2605 01:53:20,925 --> 01:53:28,766 CONSENT AND AASSENT -- ASSENT 2606 01:53:28,766 --> 01:53:30,068 DOCUMENTS MAY NOT BE PROPERLY 2607 01:53:30,068 --> 01:53:33,037 SET UP WITH DOWN SYNDROME AND 2608 01:53:33,037 --> 01:53:35,607 SOME INDIVIDUALS CAN ASSENT FOR 2609 01:53:35,607 --> 01:53:37,408 THEMSELVES AND CAN DECIDE IF 2610 01:53:37,408 --> 01:53:43,815 THEY WANT TO BE IN A STUDY OR 2611 01:53:43,815 --> 01:53:45,283 NOT AND READING LEVELS ARE 2612 01:53:45,283 --> 01:53:46,551 DIFFERENT AND CHECK YOUR STATE 2613 01:53:46,551 --> 01:53:46,751 LAWS. 2614 01:53:46,751 --> 01:53:48,820 IN DIFFERENT STATES THERE'S 2615 01:53:48,820 --> 01:53:51,089 DIFFERENT RULES ABOUT ASSENT. 2616 01:53:51,089 --> 01:53:52,557 AND SURROGATE DECISION MAKERS. 2617 01:53:52,557 --> 01:53:53,558 IT'S GOOD TO KNOW WHEN YOU'RE 2618 01:53:53,558 --> 01:53:55,393 COMING IN. 2619 01:53:55,393 --> 01:53:57,262 WE TALK ABOUT MAYBE HAVING 2620 01:53:57,262 --> 01:53:58,830 TEMPLATE LANGUAGE AND DIFFERENT 2621 01:53:58,830 --> 01:54:00,031 THINGS ALL INDIVIDUALS CAN START 2622 01:54:00,031 --> 01:54:02,500 TO PUT INTO IRBs. 2623 01:54:02,500 --> 01:54:05,336 SUBJECT PAYMENTS AND INCENTIVES. 2624 01:54:05,336 --> 01:54:07,739 CONSIDER WHAT PARTICIPANTS WANT. 2625 01:54:07,739 --> 01:54:09,374 FOR A LONG TIME WE WOULD PAY 2626 01:54:09,374 --> 01:54:12,744 PEOPLE MONEY AND TALKED TO 2627 01:54:12,744 --> 01:54:13,311 PARTICIPANTS. 2628 01:54:13,311 --> 01:54:14,145 THEY DIDN'T CARE AS MUCH AS 2629 01:54:14,145 --> 01:54:15,580 ABOUT THE MONEY. 2630 01:54:15,580 --> 01:54:17,415 THEY WANTED SWAG AND T-SHIRTS 2631 01:54:17,415 --> 01:54:21,386 AND FUN STUFF AND I ACTUALLY WE 2632 01:54:21,386 --> 01:54:22,987 MADE A BUNCH OF FUN T-SHIRTS FOR 2633 01:54:22,987 --> 01:54:24,956 OUR UPCOMING CLINICAL TRIALS. 2634 01:54:24,956 --> 01:54:27,225 IT'S A DIET TRIAL AND SO WE HAVE 2635 01:54:27,225 --> 01:54:30,228 FRUITS AND VEGETABLES ALL 2636 01:54:30,228 --> 01:54:31,629 WEARING SUPER HERO CAPES AND 2637 01:54:31,629 --> 01:54:32,063 OTHER THINGS. 2638 01:54:32,063 --> 01:54:34,933 THAT'S WHAT THEY WANTED. 2639 01:54:34,933 --> 01:54:36,634 THE OTHER THING PAID CAREGIVERS. 2640 01:54:36,634 --> 01:54:38,903 YOU HAVE PARENTS AND CAREGIVERS 2641 01:54:38,903 --> 01:54:40,171 PROBABLY BRINGING IN PEOPLE WHO 2642 01:54:40,171 --> 01:54:41,306 ARE DOING EIGHT OF THE WORK. 2643 01:54:41,306 --> 01:54:43,007 PAY THEM FOR THEIR WORK. 2644 01:54:43,007 --> 01:54:43,741 THEY'RE JUST IMPORTANT TO THE 2645 01:54:43,741 --> 01:54:44,742 RESEARCH STUDY. 2646 01:54:44,742 --> 01:54:47,145 AND MAKE SURE YOU PAY FOR TRAVEL 2647 01:54:47,145 --> 01:54:48,413 REIMBURSEMENT ESPECIALLY IF YOU 2648 01:54:48,413 --> 01:54:49,847 HAVE PEOPLE WHO WANT IT FLY IN 2649 01:54:49,847 --> 01:54:52,684 OR COME IN FROM FAR AWAY TO JOIN 2650 01:54:52,684 --> 01:54:53,384 YOUR TRIAL. 2651 01:54:53,384 --> 01:54:55,853 ALSO MAKE SURE YOU DON'T PAY 2652 01:54:55,853 --> 01:54:57,822 THEM TOO MUCH. 2653 01:54:57,822 --> 01:54:59,824 INDIVIDUALS WHO MAKE TOO MUCH 2654 01:54:59,824 --> 01:55:03,061 MAY BE AT RISK OF LOSING THEIR 2655 01:55:03,061 --> 01:55:04,929 SSI AND OTHER THINGS SO YOU 2656 01:55:04,929 --> 01:55:07,498 DON'T WANT TO GO OVER THE TAX 2657 01:55:07,498 --> 01:55:10,602 LIMIT AND FOR US IT'S $800 A 2658 01:55:10,602 --> 01:55:12,036 YEAR AND WE SPACE OUT PAYMENT 2659 01:55:12,036 --> 01:55:13,504 AND CONSIDER WHAT WILL STILL 2660 01:55:13,504 --> 01:55:15,873 BENEFIT THEM IN THE BEST WAY. 2661 01:55:15,873 --> 01:55:17,442 DATA SAFETY MONITORING BOARD. 2662 01:55:17,442 --> 01:55:19,844 MOST HAVE TO HAVE A DATA SAFETY 2663 01:55:19,844 --> 01:55:21,980 MONITORING BOARD AND INCLUDE 2664 01:55:21,980 --> 01:55:24,282 INDIVIDUALS WITH BACKGROUND AND 2665 01:55:24,282 --> 01:55:25,416 DOWN SYNDROME AND UNDERSTAND 2666 01:55:25,416 --> 01:55:27,018 WHAT DIFFERENT SAFETY FEATURES 2667 01:55:27,018 --> 01:55:28,753 MAY BE AND DEPENDING ON WHAT YOU 2668 01:55:28,753 --> 01:55:30,288 ARE AN EXPERT IN THAT FIELD NOT 2669 01:55:30,288 --> 01:55:31,789 IN DOWN SYNDROME AND COMPARE THE 2670 01:55:31,789 --> 01:55:32,056 TWO. 2671 01:55:32,056 --> 01:55:34,092 I THINK IT'S GOOD TO BRING IN 2672 01:55:34,092 --> 01:55:39,897 EVERYONE WHEN MAKING THE BOARDS. 2673 01:55:39,897 --> 01:55:46,304 I WANT TO THANK MY LAB WHO IS 2674 01:55:46,304 --> 01:55:48,840 REALLY SOLVING WHAT MAKES 2675 01:55:48,840 --> 01:55:49,874 CLINICAL TRIALS POSSIBLE AT K.U. 2676 01:55:49,874 --> 01:55:51,075 AND OUR RESEARCH PARTICIPANTS. 2677 01:55:51,075 --> 01:55:55,546 WE WANT TO TURN IT OVER TO YOU 2678 01:55:55,546 --> 01:55:57,649 GUYS TOO AND HEAR WHAT YOU THINK 2679 01:55:57,649 --> 01:55:58,850 WE NEED TO BE DOING IN THE 2680 01:55:58,850 --> 01:56:08,993 FUTURE. 2681 01:56:22,306 --> 01:56:22,840 >> THANK YOU. 2682 01:56:22,840 --> 01:56:25,677 WE WELCOME QUESTIONS FROM THE 2683 01:56:25,677 --> 01:56:26,110 AUDIENCES. 2684 01:56:26,110 --> 01:56:27,412 >> IT'S GREAT TO SEE CLINICAL 2685 01:56:27,412 --> 01:56:28,146 TRIALS AND MOU IT CAN TRANSITION 2686 01:56:28,146 --> 01:56:31,215 TO OUR HOMES. 2687 01:56:31,215 --> 01:56:33,217 I HAVE TWO SUGGESTIONS MAKE. 2688 01:56:33,217 --> 01:56:35,887 HAVE YOU THOUGHT ABOUT 2689 01:56:35,887 --> 01:56:38,723 CONDUCTING WITH THE DOWN 2690 01:56:38,723 --> 01:56:40,792 SYNDROME CLINICS ACROSS THE 2691 01:56:40,792 --> 01:56:42,627 UNITED STATES TO SHARE YOUR 2692 01:56:42,627 --> 01:56:43,895 RESULTS OR TALK WITH THEM? 2693 01:56:43,895 --> 01:56:45,730 OR EVEN RECRUIT PEOPLE? 2694 01:56:45,730 --> 01:56:47,598 THAT'S ONE. 2695 01:56:47,598 --> 01:56:51,302 THE OTHER ONE DO YOU TALK TO THE 2696 01:56:51,302 --> 01:56:52,670 CAREGIVERS' PHYSICIANS? 2697 01:56:52,670 --> 01:56:55,039 I THINK THAT'S THE MISSING PIECE 2698 01:56:55,039 --> 01:56:56,708 IN THE LONG RUN. 2699 01:56:56,708 --> 01:56:58,109 I KNOW IT'S NOT THE BASIC 2700 01:56:58,109 --> 01:56:58,843 RESEARCH BUT FROM CLINICAL 2701 01:56:58,843 --> 01:57:01,412 TRIALS WE NEED TO GO TO THOSE 2702 01:57:01,412 --> 01:57:03,781 PHYSICIANS AND THERE'S A GROUP 2703 01:57:03,781 --> 01:57:05,383 CALLED THE DOWN SYNDROME MEDICAL 2704 01:57:05,383 --> 01:57:08,219 INTEREST GROUP AND THAT'S THE 2705 01:57:08,219 --> 01:57:10,855 PLACE WHERE MANY OF US GO TO 2706 01:57:10,855 --> 01:57:19,597 WHEN WE HAVE A PROBLEM. 2707 01:57:19,597 --> 01:57:22,600 THEY TALK TO OUR PHYSICIAN AND 2708 01:57:22,600 --> 01:57:25,970 THEY NEED YOU AND WE NEED THEM. 2709 01:57:25,970 --> 01:57:27,805 >> THAT'S AN EXCELLENT POINT. 2710 01:57:27,805 --> 01:57:29,707 FOR THE DOWN SYNDROME MEDICAL 2711 01:57:29,707 --> 01:57:30,708 INTEREST GROUP THEY ALMOST 2712 01:57:30,708 --> 01:57:34,846 FUNCTION AS A NEUROLOGIST IT'S 2713 01:57:34,846 --> 01:57:36,180 OUR THALAMUS THE TRAIN WAY 2714 01:57:36,180 --> 01:57:37,448 STATION TO CONNECT RESEARCHERS 2715 01:57:37,448 --> 01:57:39,083 AND CLINICIANS ACROSS THE 2716 01:57:39,083 --> 01:57:40,218 COUNTRY SO SERVES AN EXCELLENT 2717 01:57:40,218 --> 01:57:41,919 PURPOSE FROM THAT STANDPOINT. 2718 01:57:41,919 --> 01:57:43,654 I THINK AS A PHYSICIAN SCIENTIST 2719 01:57:43,654 --> 01:57:45,356 I'M CONNECTED CLINICALLY WITH 2720 01:57:45,356 --> 01:57:47,458 OTHER CLINICS IN OUR REGION AND 2721 01:57:47,458 --> 01:57:48,893 AREA. 2722 01:57:48,893 --> 01:57:50,061 AND THEN THE RESEARCHERS OFTEN 2723 01:57:50,061 --> 01:57:52,430 WILL GO BACK AND FORTH AND SAY, 2724 01:57:52,430 --> 01:57:55,266 HEY, WE'RE ADVERTISING THIS 2725 01:57:55,266 --> 01:57:56,167 STUDY OR DO YOU HAVE SOMETHING 2726 01:57:56,167 --> 01:57:58,970 THAT THAT WE CAN CONTRIBUTE 2727 01:57:58,970 --> 01:57:59,270 WITH. 2728 01:57:59,270 --> 01:58:02,673 I THINK THAT'S ALSO THE JOY OF 2729 01:58:02,673 --> 01:58:04,242 BEING IN THE ROOM WITH EVERYONE 2730 01:58:04,242 --> 01:58:06,778 THAT THIS IS WHERE THOSE IDEAS 2731 01:58:06,778 --> 01:58:07,912 CAN ACCELERATE. 2732 01:58:07,912 --> 01:58:10,882 WHEN WE DO, FOR INSTANCE, 2733 01:58:10,882 --> 01:58:12,784 ADVOCACY EDUCATION, WEBINARS ON 2734 01:58:12,784 --> 01:58:14,418 SOMETHING LIKE REGRESSION, 2735 01:58:14,418 --> 01:58:15,620 THERE'S THE EDUCATION COMPONENT. 2736 01:58:15,620 --> 01:58:17,755 WE WANT TO EDUCATE FAMILIES AND 2737 01:58:17,755 --> 01:58:18,623 WANT PEOPLE TO KNOW THERE ARE 2738 01:58:18,623 --> 01:58:19,757 TRIALS AND A LOT OF THE TIME 2739 01:58:19,757 --> 01:58:21,859 WHEN WE GET QUERIES, IT'S MORE 2740 01:58:21,859 --> 01:58:25,396 TO SAY, I LIVE IN VIRGINIA, DO 2741 01:58:25,396 --> 01:58:28,866 YOU KNOW NEARBY THAT CAN SEE ME 2742 01:58:28,866 --> 01:58:31,435 BECAUSE WE KNOW NOT EVERYONE CAN 2743 01:58:31,435 --> 01:58:32,670 GO TO COLORADO OR CALIFORNIA AND 2744 01:58:32,670 --> 01:58:38,376 WE FUNCTION THAT ON THE RESEARCH 2745 01:58:38,376 --> 01:58:40,611 END BUT THERE'S DIFFERENT WAYS 2746 01:58:40,611 --> 01:58:41,179 WE'RE INTERCONNECTED. 2747 01:58:41,179 --> 01:58:51,789 >> I KNOW A LOT OF US ARE 2748 01:58:51,789 --> 01:58:52,890 KEEPING CONNECTED. 2749 01:58:52,890 --> 01:58:55,293 WE WORK WITH THE CLINICIAN AND 2750 01:58:55,293 --> 01:58:57,028 HAVE A GREAT DOWN SYNDROME 2751 01:58:57,028 --> 01:59:01,399 CLINIC AT K.U. HOSPITAL WITH 2752 01:59:01,399 --> 01:59:03,434 MOYA PETERSON AND WE ALWAYS GO 2753 01:59:03,434 --> 01:59:07,104 TO HER FIRST TO SEE IF SHE WANTS 2754 01:59:07,104 --> 01:59:08,406 TO BE INVOLVED. 2755 01:59:08,406 --> 01:59:10,842 SHE USUALLY DIDN'T HAVE TIME BUT 2756 01:59:10,842 --> 01:59:18,382 KEEP HER ALIGNED AND PROTECTIVE 2757 01:59:18,382 --> 01:59:20,918 OF HER PARTICIPANTS TOO AND HAVE 2758 01:59:20,918 --> 01:59:22,353 THE ABILITY TO SHARE RESULT BACK 2759 01:59:22,353 --> 01:59:27,458 AND THAT'S PART OF OUR CONSENT 2760 01:59:27,458 --> 01:59:28,759 LANGUAGE IF WE NEED TO SHARE A 2761 01:59:28,759 --> 01:59:29,861 FINDING WITH A CLINICIAN WE WILL 2762 01:59:29,861 --> 01:59:32,296 AND LET THEM HAVE A REPORT AT 2763 01:59:32,296 --> 01:59:32,730 THE END. 2764 01:59:32,730 --> 01:59:37,034 ONE OTHER THING THAT IS 2765 01:59:37,034 --> 01:59:39,237 IMPORTANT THERE TOO IS WE A LOT 2766 01:59:39,237 --> 01:59:41,539 OF TIMES GET WE GET A PHYSICIAN 2767 01:59:41,539 --> 01:59:45,409 RELEASE BEFORE THEY JOIN A 2768 01:59:45,409 --> 01:59:46,911 CLINICAL TRIAL SO THE PHYSICIAN 2769 01:59:46,911 --> 01:59:48,913 KNOWS THEY'RE IN THE STUDY AND 2770 01:59:48,913 --> 01:59:50,047 THERE'S WAYS TO CONTINUE TO 2771 01:59:50,047 --> 01:59:50,448 INCLUDE PHYSICIAN. 2772 01:59:50,448 --> 01:59:52,049 IT'S IMPORTANT TO BRING THEM IN 2773 01:59:52,049 --> 01:59:52,717 THE RESEARCH AND KEEPING THEM 2774 01:59:52,717 --> 02:00:02,293 APPRISED OF THE RESEARCH. 2775 02:00:02,293 --> 02:00:07,565 >> TO ME THIS IS ONE OF THE MOST 2776 02:00:07,565 --> 02:00:08,866 EXCITING PART IS THE 2777 02:00:08,866 --> 02:00:10,134 PARTICIPATION INCLUDE AND BASIC 2778 02:00:10,134 --> 02:00:15,673 SCIENCE AN ONE THING WE NLTOTIC 2779 02:00:15,673 --> 02:00:16,974 IN THE PAST IS THEY CREATE 2780 02:00:16,974 --> 02:00:18,809 STRUCTURED DATA SETS THAT ARE 2781 02:00:18,809 --> 02:00:19,777 WELL COORDINATE. 2782 02:00:19,777 --> 02:00:22,079 AND OFTEN TIMES THAT PERIOD OF 2783 02:00:22,079 --> 02:00:28,920 TIME WHERE A PARTICIPANT IS IN 2784 02:00:28,920 --> 02:00:30,354 IS BRACKETED A PERIOD OF TIME 2785 02:00:30,354 --> 02:00:31,589 BEFORE THEY WEREN'T INVOLVED AND 2786 02:00:31,589 --> 02:00:32,456 AFTER IT CONCLUDES. 2787 02:00:32,456 --> 02:00:33,925 HOW DO YOU THINK BE THE 2788 02:00:33,925 --> 02:00:36,327 FRAMEWORKS OF A CONTINUUM OF 2789 02:00:36,327 --> 02:00:37,929 DATA FROM BEFORE AND ESPECIALLY 2790 02:00:37,929 --> 02:00:41,699 I THINK IN MANY CONTEXTS THE 2791 02:00:41,699 --> 02:00:47,271 LONG-TERM FOLLOW-UP CONTEXT FOR 2792 02:00:47,271 --> 02:00:53,511 COORDINATION AROUND THAT. 2793 02:00:53,511 --> 02:00:56,180 WHERE YOU LEVERAGE DRUGS ALREADY 2794 02:00:56,180 --> 02:00:58,916 APPROVED WHAT ENDS UP HAPPENING 2795 02:00:58,916 --> 02:01:01,152 EVEN WITH PROMISING RESULT 2796 02:01:01,152 --> 02:01:02,486 OFF-LABEL USE OF THE DRUGS CAN 2797 02:01:02,486 --> 02:01:06,991 BECOME PART OF THE COMMUNITY 2798 02:01:06,991 --> 02:01:07,258 FRAMEWORK. 2799 02:01:07,258 --> 02:01:09,260 WHAT MAY BE WAYS YOU GUYS ARE 2800 02:01:09,260 --> 02:01:10,561 THINK IT WILL ABOUT 2801 02:01:10,561 --> 02:01:14,231 COORDINATING, COLLECTING THAT 2802 02:01:14,231 --> 02:01:14,565 DATA. 2803 02:01:14,565 --> 02:01:17,368 HOW DO YOU WORK WITHIN A NETWORK 2804 02:01:17,368 --> 02:01:22,640 OF AN ENGAGED COMMUNITY AND 2805 02:01:22,640 --> 02:01:25,409 OFF-LABEL USE OF DRUGS PART OF A 2806 02:01:25,409 --> 02:01:26,610 STRUCTURED TRIAL? 2807 02:01:26,610 --> 02:01:29,880 >> SO I THINK A GREAT EXAMPLE 2808 02:01:29,880 --> 02:01:32,183 FOR YOUR FIRST QUESTION SO OUR 2809 02:01:32,183 --> 02:01:35,419 ORIGINAL CRITERIA FOR OUR DSRD 2810 02:01:35,419 --> 02:01:39,023 TRIAL INCLUDES MRI, EEG, LUMBAR 2811 02:01:39,023 --> 02:01:41,392 PUNCTURE DATA THOUGH IT'S NOT 2812 02:01:41,392 --> 02:01:44,395 PART OF THE TRIAL IT'S DATA WE 2813 02:01:44,395 --> 02:01:46,931 AN CAN SAY THIS PATIENT RESPONDS 2814 02:01:46,931 --> 02:01:49,400 ASO WE'RE TAKING PART OF THAT 2815 02:01:49,400 --> 02:01:52,203 AND LOOKING AT SUPPLEMENTATION 2816 02:01:52,203 --> 02:01:54,638 FOR EXTENSION TO FOLLOW PATIENT. 2817 02:01:54,638 --> 02:01:58,042 WHAT WE OBSERVED IS AGAIN MANY 2818 02:01:58,042 --> 02:01:58,943 PATIENTS RESPOND TO TREATMENT 2819 02:01:58,943 --> 02:02:00,878 BUT MAY ADD ON AN ADDITIONAL 2820 02:02:00,878 --> 02:02:02,780 THERAPY AND WE ALSO WANT TO 2821 02:02:02,780 --> 02:02:06,417 CAPTURE THAT RESPONSE 2822 02:02:06,417 --> 02:02:07,985 LONGITUDINALLY THOUGH IT'S MAYBE 2823 02:02:07,985 --> 02:02:10,121 LESS SCIENTIFICALLY CONTROLLED 2824 02:02:10,121 --> 02:02:11,889 AND THERE'S HUGE VALUE IN THE 2825 02:02:11,889 --> 02:02:13,391 LONGITUDINAL ASPECT. 2826 02:02:13,391 --> 02:02:18,662 AND THE SECOND QUESTION I 2827 02:02:18,662 --> 02:02:20,531 FORGOT. 2828 02:02:20,531 --> 02:02:22,366 OH, DRUG REPURPOSING. 2829 02:02:22,366 --> 02:02:25,503 WE'VE BEEN CONSCIOUS FOR IBIG IS 2830 02:02:25,503 --> 02:02:26,037 COSTLY. 2831 02:02:26,037 --> 02:02:28,906 SO WHEN WE PUBLISH THE STUDIES 2832 02:02:28,906 --> 02:02:31,175 THE ACTUAL RETROSPECTIVE DATA 2833 02:02:31,175 --> 02:02:34,311 WE'RE USING AND MULTIPLE CENTERS 2834 02:02:34,311 --> 02:02:35,613 IS TO SEND THAT TO THE INSURANCE 2835 02:02:35,613 --> 02:02:37,314 COMPANY AND GET THE APPROVAL. 2836 02:02:37,314 --> 02:02:39,750 WE HAVE A CLINICAL DOCUMENT WE 2837 02:02:39,750 --> 02:02:41,852 SENT TO OTHER SITES AS AN APPEAL 2838 02:02:41,852 --> 02:02:42,119 LETTER. 2839 02:02:42,119 --> 02:02:43,754 FOR PATIENTS WHO WANT TO 2840 02:02:43,754 --> 02:02:46,991 CONTINUE IBIG IN THE CLINICAL 2841 02:02:46,991 --> 02:02:49,827 TRIAL WE'LL E-MAIL THAT WITH THE 2842 02:02:49,827 --> 02:02:50,795 DOCUMENTATION SHOWING THE 2843 02:02:50,795 --> 02:02:52,696 IMPROVEMENTS OFFER TIME TO COME 2844 02:02:52,696 --> 02:02:54,799 PREPARED WITH A PACKET THEY CAN 2845 02:02:54,799 --> 02:02:56,367 THEN SUBMIT OR SUBMIT ON THEIR 2846 02:02:56,367 --> 02:02:57,501 BEHALF TOO. 2847 02:02:57,501 --> 02:02:59,770 THE RETROSPECTIVE DATA IS 2848 02:02:59,770 --> 02:03:00,771 CHALLENGING BECAUSE THERE HAS TO 2849 02:03:00,771 --> 02:03:02,206 BE SYNERGY FOR WHAT DATA POINTS 2850 02:03:02,206 --> 02:03:04,041 ARE COLLECTING ON THAT END. 2851 02:03:04,041 --> 02:03:07,845 I FIND THE MORE SIMPLIFIED YOU 2852 02:03:07,845 --> 02:03:09,747 CAN DO IT THE MORE STRICTLY 2853 02:03:09,747 --> 02:03:11,148 CLINICAL SITES CAN DO THAT. 2854 02:03:11,148 --> 02:03:12,416 >> AND MAYBE A RECOMMENDATION, I 2855 02:03:12,416 --> 02:03:16,921 THINK YOU MENTIONED THE AMAZING 2856 02:03:16,921 --> 02:03:20,357 JUAQUIN ESPINOZA, FOR EXAMPLE, I 2857 02:03:20,357 --> 02:03:22,927 WAS THINKING AND WHAT'S GREAT 2858 02:03:22,927 --> 02:03:23,794 ABOUT THE DOWN SYNDROME 2859 02:03:23,794 --> 02:03:26,063 COMMUNITY SO MANY PARTICIPANTS 2860 02:03:26,063 --> 02:03:34,205 ARE PART OF AN OBSERVATION AL 2861 02:03:34,205 --> 02:03:35,773 PROTOCOL AND AUGMENTING OTHER 2862 02:03:35,773 --> 02:03:37,875 DATA AND THEN THEY'LL BE IN THE 2863 02:03:37,875 --> 02:03:40,311 HB PROTOCOL LONGER TERM AND HAVE 2864 02:03:40,311 --> 02:03:42,713 THE MULTI-PROTOCOL FRAMEWORK TO 2865 02:03:42,713 --> 02:03:46,951 CREATE LIKE AN UNPRECEDENTED 2866 02:03:46,951 --> 02:03:47,952 LONGITUDINAL CONTEXT FOR 2867 02:03:47,952 --> 02:03:49,386 PATIENTS THAT I THINK IS ONE OF 2868 02:03:49,386 --> 02:03:50,287 THE MOST DIFFERENTIATING 2869 02:03:50,287 --> 02:03:51,989 COMPONENTS OF INCLUDE. 2870 02:03:51,989 --> 02:03:54,091 >> THAT'S THE EXACT PAIRING WE 2871 02:03:54,091 --> 02:03:57,394 HAVE OF THE STUDIES THEY CAN BE 2872 02:03:57,394 --> 02:03:59,196 TRACKED LONGITUDINALLY. 2873 02:03:59,196 --> 02:04:03,767 JUST BE CAREFUL, IF YOU SAY 2874 02:04:03,767 --> 02:04:04,935 JUAQUIN'S NAME THREE TIMES HE 2875 02:04:04,935 --> 02:04:08,005 MAY APPEAR OR DISAPPEAR. 2876 02:04:08,005 --> 02:04:13,144 >> AND THE PRE AND POST PHASE 2877 02:04:13,144 --> 02:04:14,879 THERE'S OTHER LIKE WHERE YOU 2878 02:04:14,879 --> 02:04:16,881 ENROLL PEOPLE WHO MAY WANT TO BE 2879 02:04:16,881 --> 02:04:18,415 IN A CLINICAL TRIAL IN THE 2880 02:04:18,415 --> 02:04:20,284 FUTURE AND YOU'RE GATHERING THE 2881 02:04:20,284 --> 02:04:21,285 PRE-DATA, THEY DO THE CLINICAL 2882 02:04:21,285 --> 02:04:22,853 TRIAL AND THEN GO BACK TO THIS 2883 02:04:22,853 --> 02:04:26,090 COHORT AND YOU CAN FOLLOW LONG 2884 02:04:26,090 --> 02:04:27,591 TERM AND NOW WE'RE ABLE TO TRACK 2885 02:04:27,591 --> 02:04:28,993 IF THEY DO OTHER TRIALS AND HOW 2886 02:04:28,993 --> 02:04:31,395 ONE MAY AFFECT ANOTHER. 2887 02:04:31,395 --> 02:04:33,197 AS WE CONTINUE TO BUILD OUT THE 2888 02:04:33,197 --> 02:04:33,931 INFRASTRUCTURE IT WILL BE 2889 02:04:33,931 --> 02:04:35,099 IMPORTANT GOING FORWARD AND 2890 02:04:35,099 --> 02:04:38,769 MAKING SURE WE'RE ABLE TO HAVE 2891 02:04:38,769 --> 02:04:39,803 THE PRE AND POST 2892 02:04:39,803 --> 02:04:40,337 CHARACTERIZATION OF OUR 2893 02:04:40,337 --> 02:04:47,745 PARTICIPANTS GOING THROUGH THAT. 2894 02:04:47,745 --> 02:04:53,284 >> MY NAME IS ELIANA AND WORK IN 2895 02:04:53,284 --> 02:04:56,153 ONE OF THE MOST CITIES WHICH IS 2896 02:04:56,153 --> 02:04:56,554 HOUSTON. 2897 02:04:56,554 --> 02:05:02,927 WE CONDUCTED A COUPLE BEHAVIORAL 2898 02:05:02,927 --> 02:05:04,495 TRIALS AND I WAS VERY SURPRISED 2899 02:05:04,495 --> 02:05:08,065 AND WANT TO HEAR ABOUT YOUR 2900 02:05:08,065 --> 02:05:10,968 SURPRISES BY THE FEEDBACK WHICH 2901 02:05:10,968 --> 02:05:15,439 NOT NECESSARILY DIRECTED BY OUR 2902 02:05:15,439 --> 02:05:17,341 QUESTIONNAIRES OR DOCUMENTS FOR 2903 02:05:17,341 --> 02:05:21,045 THE SKILLS WE'RE INTERESTED IN 2904 02:05:21,045 --> 02:05:22,613 BUT CAPTURE SOMETHING THAT CAN 2905 02:05:22,613 --> 02:05:26,016 BE SOLICITED PRIMARILY IN 2906 02:05:26,016 --> 02:05:28,252 QUALITATIVE WORK OR NEEDS DESIGN 2907 02:05:28,252 --> 02:05:28,452 WORK. 2908 02:05:28,452 --> 02:05:31,255 SOME SAYING THERE'S PEOPLE WHO 2909 02:05:31,255 --> 02:05:33,224 ARE APPARENTLY GRATEFUL THOR THE 2910 02:05:33,224 --> 02:05:35,526 SERVICES SO TO SPEAK AND THEN 2911 02:05:35,526 --> 02:05:40,464 BRING UP MIXED EMOTIONS AND 2912 02:05:40,464 --> 02:05:41,899 FEELINGS AND CULTURAL BIASES ALL 2913 02:05:41,899 --> 02:05:46,070 THE THINGS WE DON'T TYPICALLY 2914 02:05:46,070 --> 02:05:49,907 CAPTURE IN SURVEYS AND ANY 2915 02:05:49,907 --> 02:05:52,443 SURPRISE AND HOW DO YOU 2916 02:05:52,443 --> 02:05:56,680 ENCOMPASS THE DIVERSITY WHEN 2917 02:05:56,680 --> 02:05:58,415 GROUPS REACT WITH PERHAPS A 2918 02:05:58,415 --> 02:06:00,150 GRAIN OF SALT TO OUR REGIMENTS 2919 02:06:00,150 --> 02:06:03,087 AND SUGGESTIONS AND SO FORTH. 2920 02:06:03,087 --> 02:06:03,687 >> THANK YOU. 2921 02:06:03,687 --> 02:06:06,056 >> I THINK THAT'S A GREAT 2922 02:06:06,056 --> 02:06:07,491 QUESTION TOO. 2923 02:06:07,491 --> 02:06:09,193 THERE'S KIND OF THE DIFFERENCE 2924 02:06:09,193 --> 02:06:09,960 BETWEEN COMMUNITY NEEDS, 2925 02:06:09,960 --> 02:06:11,362 COMMUNITY WANTS AND SCIENTIFIC 2926 02:06:11,362 --> 02:06:13,030 RIGOR AND IT'S TRYING TO FIGURE 2927 02:06:13,030 --> 02:06:15,332 OUT HOW DO YOU COMBINE ALL OF 2928 02:06:15,332 --> 02:06:18,902 THAT TOGETHER AND IT CAN BE 2929 02:06:18,902 --> 02:06:20,004 REALLY HARD AND KNOWING SOMETIME 2930 02:06:20,004 --> 02:06:22,840 PEOPLE WANT TO CHANGE OR 2931 02:06:22,840 --> 02:06:23,741 DIFFERENT THINGS IT AFFECT THE 2932 02:06:23,741 --> 02:06:25,309 SCIENTIFIC INTEGRITY AND RIGOR 2933 02:06:25,309 --> 02:06:27,144 AND FIND WHAT YOU CAN ADAPT AND 2934 02:06:27,144 --> 02:06:28,679 CHANGE WHILE KEEPING WITH THE 2935 02:06:28,679 --> 02:06:29,113 SCIENTIFIC RIGOR. 2936 02:06:29,113 --> 02:06:31,115 I DON'T KNOW IF THERE'S ONE GOOD 2937 02:06:31,115 --> 02:06:34,084 WAY OR NOT EXCEPT FOR WE ARE 2938 02:06:34,084 --> 02:06:35,119 CONTINUOUSLY TALKING WITH OUR 2939 02:06:35,119 --> 02:06:36,353 FAMILIES AND TALKING WITH 2940 02:06:36,353 --> 02:06:38,222 ADVOCATES AND TRYING TO FIGURE 2941 02:06:38,222 --> 02:06:39,957 OUT HOW WE CAN CONTINUE TO ADAPT 2942 02:06:39,957 --> 02:06:41,058 OUR PROGRAMS TO FIT EVERYONE'S 2943 02:06:41,058 --> 02:06:41,358 NEEDS. 2944 02:06:41,358 --> 02:06:43,060 I THINK WE ALL KNOW RIGHT NOW 2945 02:06:43,060 --> 02:06:44,895 THERE IS NO ONE SIZE FITS ALL 2946 02:06:44,895 --> 02:06:45,596 OPTION AN THERE'S A LOT OF WORK 2947 02:06:45,596 --> 02:06:50,434 THAT NEEDS TO BE DONE. 2948 02:06:50,434 --> 02:06:53,170 I THINK DOING THE FOCUS WORKS 2949 02:06:53,170 --> 02:06:54,471 AND STRUCTURED INTERVIEWS AND 2950 02:06:54,471 --> 02:06:55,873 EXIST INTERVIEWS OF SOMEONE WHO 2951 02:06:55,873 --> 02:06:57,274 DIDN'T LIKE A TRAIL IS REALLY 2952 02:06:57,274 --> 02:06:57,508 NEEDED. 2953 02:06:57,508 --> 02:06:59,710 I THINK MAKING IT MORE COMMON TO 2954 02:06:59,710 --> 02:07:01,145 EVEN PUBLIC THAT DATA AND GET 2955 02:07:01,145 --> 02:07:02,379 THAT OUT THERE SO OTHER PEOPLE 2956 02:07:02,379 --> 02:07:03,947 CAN HEAR AND LEARN. 2957 02:07:03,947 --> 02:07:05,449 I KNOW SOMETIMES QUALITATIVE 2958 02:07:05,449 --> 02:07:08,485 DATA CAN BE HARDER TO PUBLISH IN 2959 02:07:08,485 --> 02:07:09,486 A MEANINGFUL WAY. 2960 02:07:09,486 --> 02:07:11,922 CONTINUING TO FIGURE OUT HOW WE 2961 02:07:11,922 --> 02:07:13,424 CAN SHARE THAT INFORMATION IS 2962 02:07:13,424 --> 02:07:16,760 REALLY IMPORTANT. 2963 02:07:16,760 --> 02:07:19,730 >> SO THIS QUESTION WAS KIND OF 2964 02:07:19,730 --> 02:07:21,498 PROMPTED BY THE PRIOR SESSION 2965 02:07:21,498 --> 02:07:24,301 BUT IS RELEVANT TO THIS ONE I 2966 02:07:24,301 --> 02:07:27,004 THINK WHICH HAS TO DO WITH WHEN 2967 02:07:27,004 --> 02:07:28,305 DOES THE FDA THINK YOU'RE READY 2968 02:07:28,305 --> 02:07:29,573 FOR A TRAIL. 2969 02:07:29,573 --> 02:07:31,208 AND SPECIFICALLY I THINK IT WAS 2970 02:07:31,208 --> 02:07:33,811 MENTIONED THAT THERE WOULD BE A 2971 02:07:33,811 --> 02:07:37,815 CLINICAL TRIAL OF AN ASO WITH 2972 02:07:37,815 --> 02:07:40,784 INTERFECAL DELIVERY OF ABB TO 2973 02:07:40,784 --> 02:07:41,085 APP. 2974 02:07:41,085 --> 02:07:43,620 I'M AWARE MY INSTITUTION DOES A 2975 02:07:43,620 --> 02:07:45,055 LOT OF GENE THERAPY AND AWARE OF 2976 02:07:45,055 --> 02:07:47,658 THOSE PROTOCOLS HAVE BEEN 2977 02:07:47,658 --> 02:07:49,493 APPLIED TO OTHER DISEASES BUT 2978 02:07:49,493 --> 02:07:51,161 DIDN'T KNOW WHETHER THE WAY IT 2979 02:07:51,161 --> 02:07:52,863 WORKS IS THE FDA WOULD SAY, 2980 02:07:52,863 --> 02:07:54,465 WELL, THIS GENERAL PROCESS IS 2981 02:07:54,465 --> 02:07:57,134 OKAY SO NOW YOU CAN TARGET A 2982 02:07:57,134 --> 02:07:59,002 DIFFERENT GENE OR HOW DOES THAT 2983 02:07:59,002 --> 02:08:00,671 WORK? 2984 02:08:00,671 --> 02:08:05,008 >> IT'S A GREAT QUESTION FOR 2985 02:08:05,008 --> 02:08:08,746 DR. RAFII BIT THINK FOR 2986 02:08:08,746 --> 02:08:09,546 REPURPOSING DRUGS APPROVED FOR 2987 02:08:09,546 --> 02:08:10,781 OTHER INDICATION THE BAR IS 2988 02:08:10,781 --> 02:08:11,482 LOWER. 2989 02:08:11,482 --> 02:08:13,250 YOU REACH OUT TO THE FDA AS PART 2990 02:08:13,250 --> 02:08:14,818 OF THE TRIAL PROCESS BUT AGAIN 2991 02:08:14,818 --> 02:08:16,653 IN SPECIAL POPULATIONS OF WHICH 2992 02:08:16,653 --> 02:08:20,891 DOWN SYNDROME IS ONE, THAT SIGN 2993 02:08:20,891 --> 02:08:24,561 OFF AND DESIRE TO GO TO PHASE II 2994 02:08:24,561 --> 02:08:25,629 FIRST BEFORE PHASE III THOUGH 2995 02:08:25,629 --> 02:08:27,865 THE BAR MAY NOT BE SET IN OTHER 2996 02:08:27,865 --> 02:08:31,835 CONDITIONS IS PRETTY TYPICAL. 2997 02:08:31,835 --> 02:08:36,140 FOR ASA PLATFORMS IT'S BASED ON 2998 02:08:36,140 --> 02:08:37,408 THE GENE TARGET. 2999 02:08:37,408 --> 02:08:40,110 >> AND ALSO, DOES THE FDA MORE 3000 02:08:40,110 --> 02:08:42,079 LIKELY APPROVE A TRIAL IF YOU 3001 02:08:42,079 --> 02:08:44,081 HAVE SOMETHING LIKE REGRESSION 3002 02:08:44,081 --> 02:08:47,918 WHICH IS SO SEVERE, TREAT BEING 3003 02:08:47,918 --> 02:08:49,420 A CHILD THAT IS GOING OKAY WOULD 3004 02:08:49,420 --> 02:08:50,187 BE WHOLE DIFFERENT LEVEL. 3005 02:08:50,187 --> 02:08:52,589 >> AND I THINK IT COMES FROM 3006 02:08:52,589 --> 02:08:57,561 MULTIPLE DIFFERENT ANGLES. 3007 02:08:57,561 --> 02:08:59,696 FOR A CONDITION EVEN IF EASE 3008 02:08:59,696 --> 02:09:00,731 EMERGING IT'S MORE DIFFICULT TO 3009 02:09:00,731 --> 02:09:01,565 GET THAT ACROSS. 3010 02:09:01,565 --> 02:09:03,967 WE'RE MOVING TO A PHASE IN DOWN 3011 02:09:03,967 --> 02:09:05,402 SYNDROME AND OUTSIDE OF THAT 3012 02:09:05,402 --> 02:09:08,372 WHERE WE'RE GOING TO BE DOING 3013 02:09:08,372 --> 02:09:09,907 PREVENTATIVE PHARMACOLOGIC 3014 02:09:09,907 --> 02:09:10,140 STUDIES. 3015 02:09:10,140 --> 02:09:11,775 I THINK THERE'S MORE NORMATIVE 3016 02:09:11,775 --> 02:09:13,944 DESIRE FOR THAT AND LOOKING AT 3017 02:09:13,944 --> 02:09:16,914 THE AD SPACE IN GENERAL OUTSIDE 3018 02:09:16,914 --> 02:09:18,182 OF DOWN SYNDROME ALL THE TRIALS 3019 02:09:18,182 --> 02:09:20,484 ARE TRYING TO PREVENTION 3020 02:09:20,484 --> 02:09:24,188 DEMENTIA HAVE HAPPENING EVEN IF 3021 02:09:24,188 --> 02:09:34,665 THEY'RE SYMPTOMATIC ALREADY. 3022 02:09:56,687 --> 02:09:58,055 >> SHOW OFF THAT DESIGN. 3023 02:09:58,055 --> 02:10:03,494 IT'S FOR OUR SELF-ADVOCATES. 3024 02:10:03,494 --> 02:10:08,565 >> I WANTED TO EMPHASIZE WHICH 3025 02:10:08,565 --> 02:10:11,134 IS THE NOTION WE NEED TO DO LONG 3026 02:10:11,134 --> 02:10:12,970 -TERM FOLLOW UP FOR EVERYONE WHO 3027 02:10:12,970 --> 02:10:15,539 GRADUATE FROM THE CLINICAL 3028 02:10:15,539 --> 02:10:15,739 TRIAL. 3029 02:10:15,739 --> 02:10:15,873 S. 3030 02:10:15,873 --> 02:10:17,808 NEVER BEFORE IN THE HISTORY OF 3031 02:10:17,808 --> 02:10:19,543 HUMAN KIND HAVE THERE BEEN THIS 3032 02:10:19,543 --> 02:10:20,677 MANY CLINICAL TRIALS FOR PEOPLE 3033 02:10:20,677 --> 02:10:21,812 WITH DOWN SYNDROME. 3034 02:10:21,812 --> 02:10:22,846 AND IF YOU LOOK AT THE TRIALS 3035 02:10:22,846 --> 02:10:24,915 THAT WERE PRESENTED TODAY, MANY 3036 02:10:24,915 --> 02:10:27,718 OF THEM ARE MEDICINES THAT ARE 3037 02:10:27,718 --> 02:10:29,353 APPROVED FOR OTHER INDICATIONS 3038 02:10:29,353 --> 02:10:33,023 AND MANY PARTICIPANTS IF THEY 3039 02:10:33,023 --> 02:10:35,559 BENEFIT WILL REMAIN IN AN 3040 02:10:35,559 --> 02:10:38,362 OFF-LABEL PRESCRIPTION. 3041 02:10:38,362 --> 02:10:40,297 FOLLOWING UP PEOPLE WHO A TRIAL 3042 02:10:40,297 --> 02:10:43,800 AND PHARMA AND GENERAL 3043 02:10:43,800 --> 02:10:45,402 POPULATION IS NOT A VERY AND 3044 02:10:45,402 --> 02:10:50,641 FUNDING MECHANISM FOR YOU RIGHT 3045 02:10:50,641 --> 02:11:00,717 NOW. 3046 02:11:02,653 --> 02:11:04,755 SOMETHING FOR TO US THINK ABOUT 3047 02:11:04,755 --> 02:11:07,424 HOW WE'LL FOLLOW UP ALL THE 3048 02:11:07,424 --> 02:11:09,126 INDIVIDUALS UPON GARAGE BASE. 3049 02:11:09,126 --> 02:11:10,127 THAT'S ONE THING. 3050 02:11:10,127 --> 02:11:12,563 -- GRADUATION. 3051 02:11:12,563 --> 02:11:17,568 THE OTHER THING IS TO EMPHASIZE 3052 02:11:17,568 --> 02:11:23,073 IS ABOUT COMMUNITY ENGAGEMENT 3053 02:11:23,073 --> 02:11:27,945 AND I CALLED YOU JOHN BECAUSE OF 3054 02:11:27,945 --> 02:11:29,479 A MOMENT THAT TOLD ME ABOUT YOUR 3055 02:11:29,479 --> 02:11:30,280 WORK AND THIS PERSON WAS A 3056 02:11:30,280 --> 02:11:34,151 PATIENT OF YOURS. 3057 02:11:34,151 --> 02:11:35,452 EVEN FROM THE GENESIS OF THE I'D 3058 02:11:35,452 --> 02:11:45,996 ANDTAKE TAME TO TALK TO AND FDA 3059 02:12:02,946 --> 02:12:04,748 APPROVAL FROM PHASE III WILL 3060 02:12:04,748 --> 02:12:07,150 TAKE A WHILE WE HOPE TO GET 3061 02:12:07,150 --> 02:12:07,451 THERE SOON. 3062 02:12:07,451 --> 02:12:09,419 THERE'S SOMETHING GOOD SHORT OF 3063 02:12:09,419 --> 02:12:12,456 THAT WHICH IS A VERY GOOD PAPER 3064 02:12:12,456 --> 02:12:15,692 WITH RIGOROUS DATA THAT HELPS 3065 02:12:15,692 --> 02:12:18,228 OUR PHYSICIAN FRIENDS DO THE 3066 02:12:18,228 --> 02:12:19,396 OFF-LABEL PRESCRIPTION OR CHOOSE 3067 02:12:19,396 --> 02:12:22,399 BETWEEN MORE THAN ONE OPTION. 3068 02:12:22,399 --> 02:12:23,133 THAT WAS INTRINSIC FOR THE 3069 02:12:23,133 --> 02:12:29,773 TRIAL. 3070 02:12:29,773 --> 02:12:33,777 WHAT DATA DO YOU THINK PUTS THE 3071 02:12:33,777 --> 02:12:36,446 QUESTION TO PUT THAT TO REST? 3072 02:12:36,446 --> 02:12:39,750 WE NEED RIGOROUS DATA AND NIH 3073 02:12:39,750 --> 02:12:41,752 SPONSORED CLINICAL TRIAL THAT 3074 02:12:41,752 --> 02:12:43,286 CARRIES A LOT OF WEIGHT SO WE 3075 02:12:43,286 --> 02:12:44,688 WON'T HAVE APPROVAL BECAUSE WE 3076 02:12:44,688 --> 02:12:47,057 DON'T HAVE THE NUMBERS OR ME 3077 02:12:47,057 --> 02:12:49,292 PLACEBO CONTROL ARM BUT HAVE A 3078 02:12:49,292 --> 02:12:51,695 GOOD DATA SET THEY'LL BE 3079 02:12:51,695 --> 02:12:53,397 COMFORTABLE USING THE MEDICAL 3080 02:12:53,397 --> 02:12:54,364 INSURANCE IN OTHER PATIENT FOR 3081 02:12:54,364 --> 02:12:55,932 THAT PRESCRIPTION. 3082 02:12:55,932 --> 02:12:58,101 I WANT TO THANK YOU FOR 3083 02:12:58,101 --> 02:12:58,635 HIGHLIGHTING A LOT OF THE 3084 02:12:58,635 --> 02:13:06,576 IMPORTANT POINTS. 3085 02:13:06,576 --> 02:13:09,012 >> WHEN WE LOOK AT PUTTING ON 3086 02:13:09,012 --> 02:13:11,148 THE PHYSICIAN HAT AND SAY I NEED 3087 02:13:11,148 --> 02:13:13,583 TO TRY SOMETHING THAT'S NOVEL, 3088 02:13:13,583 --> 02:13:17,054 EXPERIMENTAL AND NEW, THE DATA 3089 02:13:17,054 --> 02:13:19,122 BECOMES CRITICALLY IMPORTANT. 3090 02:13:19,122 --> 02:13:21,425 WHILE WE'RE RUNNING PHASE II 3091 02:13:21,425 --> 02:13:23,860 DATA DO WE NEED TO PUBLISH 3092 02:13:23,860 --> 02:13:25,095 SOMETHING ADDITIONAL TO HELP 3093 02:13:25,095 --> 02:13:26,229 SUPPLEMENT THAT IN THE INTERIM. 3094 02:13:26,229 --> 02:13:35,072 THAT'S BEEN A GAME CHANGER. 3095 02:13:35,072 --> 02:13:37,074 AND LOOKING FROM YOUR FIRST 3096 02:13:37,074 --> 02:13:40,310 POINT TO THE LONG-TERM FOLLOW UP 3097 02:13:40,310 --> 02:13:43,413 WHAT WE HAVE THROUGH THE INCLUDE 3098 02:13:43,413 --> 02:13:45,015 INITIATIVE IS DEVELOPING THE 3099 02:13:45,015 --> 02:13:46,883 FRAMEWORK FOR WHAT WE SAW WITH 3100 02:13:46,883 --> 02:13:50,687 THE FRAMINGHAM HEART STUDY. 3101 02:13:50,687 --> 02:13:51,354 FOLLOWING INDIVIDUALS ACROSS A 3102 02:13:51,354 --> 02:13:53,090 LONG PERIOD OF TIME TO SEE WHAT 3103 02:13:53,090 --> 02:13:57,828 THE DIFFERENTIATING FACTORS WERE 3104 02:13:57,828 --> 02:14:01,398 FOR CARDIO VASCULAR RISK AND 3105 02:14:01,398 --> 02:14:05,202 STROKE RISK SEEING WHICH ARE 3106 02:14:05,202 --> 02:14:07,170 HAVING CLUSTERS OF CONDITIONS 3107 02:14:07,170 --> 02:14:08,472 AND WHILE THERE'S NOT A 3108 02:14:08,472 --> 02:14:09,873 MECHANISM RIGHT NOW IT'S 3109 02:14:09,873 --> 02:14:10,741 SOMETHING TO START BECAUSE THE 3110 02:14:10,741 --> 02:14:12,976 OPPORTUNITY IS THERE AND WE'RE 3111 02:14:12,976 --> 02:14:15,145 ALL COLLECTING DATA IN 3112 02:14:15,145 --> 02:14:16,146 SYNERGISTIC WAYS AND THROUGH 3113 02:14:16,146 --> 02:14:18,115 PROJECTS LIKE HTP WE MAY BE ABLE 3114 02:14:18,115 --> 02:14:20,250 TO MOVE THAT AT A FASTER RATE 3115 02:14:20,250 --> 02:14:20,884 THAN WHAT WE'VE SEEN IN OTHER 3116 02:14:20,884 --> 02:14:26,223 DISEASES. 3117 02:14:26,223 --> 02:14:28,158 >> I KNOW INCLUDE IS BUILDING 3118 02:14:28,158 --> 02:14:34,765 OUT THE DS4C TO BUILD A COHORT 3119 02:14:34,765 --> 02:14:35,932 ACROSS THE LIFE SPAN AND WE'LL 3120 02:14:35,932 --> 02:14:38,769 BE ABLE TO TRACK WHEN THEY JOIN 3121 02:14:38,769 --> 02:14:39,136 CLINICAL TRIALS. 3122 02:14:39,136 --> 02:14:41,204 THAT'S MY PLUG FOR INCLUDE RIGHT 3123 02:14:41,204 --> 02:14:41,471 THERE. 3124 02:14:41,471 --> 02:14:42,372 THAT'S SOMETHING THAT IS GREAT 3125 02:14:42,372 --> 02:14:43,940 THIS GROUP IS WORKING ON AND WE 3126 02:14:43,940 --> 02:14:45,642 CAN ALL CONTINUE TO TRY TO 3127 02:14:45,642 --> 02:14:48,578 CONTRIBUTE TO. 3128 02:14:48,578 --> 02:14:53,116 >> I THINK WE HAVE TIME FOR ONE 3129 02:14:53,116 --> 02:14:53,583 MORE QUESTION. 3130 02:14:53,583 --> 02:14:55,485 >> THANK YOU FOR YOUR REALLY 3131 02:14:55,485 --> 02:14:58,522 GOOD ADVICE ABOUT CLINICAL 3132 02:14:58,522 --> 02:15:01,525 RESEARCH AND CLINICAL TRIALS. 3133 02:15:01,525 --> 02:15:05,128 I WANT TO ASK SOME THINGS MAYBE 3134 02:15:05,128 --> 02:15:12,469 NOT RELATED WITH YOUR SPECIFIC 3135 02:15:12,469 --> 02:15:13,470 FIELD BUT FACE SOMETHING WE HAVE 3136 02:15:13,470 --> 02:15:17,107 TO DO OUTSIDE OF NORTH AMERICA 3137 02:15:17,107 --> 02:15:21,945 IN BOLIVIA AND FROM THE 3138 02:15:21,945 --> 02:15:27,851 UNIVERSITY AN SOMETIMES WHEN WE 3139 02:15:27,851 --> 02:15:29,986 HAVE TO FACE BIOETHICS WE HAVE 3140 02:15:29,986 --> 02:15:31,688 TO FACE THE LACK OF KNOWLEDGE OF 3141 02:15:31,688 --> 02:15:39,362 OUR SYSTEM INCLUDING PEOPLE AND 3142 02:15:39,362 --> 02:15:41,364 NEED TO SOMETIMES IF WE INVITE 3143 02:15:41,364 --> 02:15:44,201 THEM TO PARTICIPATE IN THIS 3144 02:15:44,201 --> 02:15:47,604 EMPOWERING OF KNOWLEDGE, THEY 3145 02:15:47,604 --> 02:15:54,077 CAN BE CONSIDERING WE'RE TRYING 3146 02:15:54,077 --> 02:15:57,981 TO INDUCE THEIR RESEARCH THAT IS 3147 02:15:57,981 --> 02:16:00,116 UNDERSTANDING THE INDUSTRY OR 3148 02:16:00,116 --> 02:16:02,953 THE RESEARCHERS CAN TAKE WANT IT 3149 02:16:02,953 --> 02:16:06,223 TAKE ADVANTAGE ABOUT THE 3150 02:16:06,223 --> 02:16:08,491 PATIENTS AND WE HAVE TO COMBAT 3151 02:16:08,491 --> 02:16:10,627 THE WAY TO DO BECAUSE HERE YOU 3152 02:16:10,627 --> 02:16:13,363 HAVE THE RULES AND METHODS AND 3153 02:16:13,363 --> 02:16:15,632 PROTOCOLS BUT OUTSIDE IN MY 3154 02:16:15,632 --> 02:16:18,368 COUNTRY WE HAVE TO FACE ALL THE 3155 02:16:18,368 --> 02:16:20,770 TIME WITH THAT THIS IS WHAT A 3156 02:16:20,770 --> 02:16:21,438 WANT TO HEAR ABOUT YOUR 3157 02:16:21,438 --> 02:16:21,738 EXPERIENCE. 3158 02:16:21,738 --> 02:16:25,575 THANK YOU. 3159 02:16:25,575 --> 02:16:28,979 >> SO WHILE THERE MAY BE BARRIER 3160 02:16:28,979 --> 02:16:30,580 OUTSIDE THE UNITED STATES, WE'VE 3161 02:16:30,580 --> 02:16:32,249 ENCOUNTERED SOME WITHIN THE 3162 02:16:32,249 --> 02:16:32,582 UNITED STATES. 3163 02:16:32,582 --> 02:16:35,118 WITH OUR FIRST IRB PROTOCOLS, WE 3164 02:16:35,118 --> 02:16:38,088 FOUND THERE WAS PATERNALISM 3165 02:16:38,088 --> 02:16:38,388 HAPPENING. 3166 02:16:38,388 --> 02:16:41,091 THE IRB WOULD SAY WE WOULD NOT 3167 02:16:41,091 --> 02:16:43,059 ALLOW X, Y, Z TYPE OF INITIATION 3168 02:16:43,059 --> 02:16:45,762 OR INTERVENTION FOR AN 3169 02:16:45,762 --> 02:16:46,630 INDIVIDUAL WITH DOWN SYNDROME. 3170 02:16:46,630 --> 02:16:50,767 I ASKED THE IRB TO GIVE ME ALL 3171 02:16:50,767 --> 02:16:52,602 OF THEIR STUDIES, I LOOKED 3172 02:16:52,602 --> 02:16:54,037 THROUGH THEM ONE BY ONE AND 3173 02:16:54,037 --> 02:16:55,071 FOUND ONE DOING THE SAME THING 3174 02:16:55,071 --> 02:16:57,140 AS US WE WERE PROPOSING AND 3175 02:16:57,140 --> 02:16:58,875 SAYING WHY IS IT OKAY IN THIS 3176 02:16:58,875 --> 02:17:00,844 PATIENT POPULATION AND NOT OKAY 3177 02:17:00,844 --> 02:17:01,711 IN PERSONS WITH DOWN SYNDROME? 3178 02:17:01,711 --> 02:17:02,846 THERE'S THAT ASPECT TO MAKE SURE 3179 02:17:02,846 --> 02:17:05,415 THE INDIVIDUALS MAKING THE 3180 02:17:05,415 --> 02:17:06,816 DECISION UNDERSTAND THAT THEY'RE 3181 02:17:06,816 --> 02:17:09,085 NOT MAKING THE SAME DECISION 3182 02:17:09,085 --> 02:17:10,921 ACROSS THE BOARD EVEN THOUGH 3183 02:17:10,921 --> 02:17:12,522 THERE MAY BE AN ABSENCE OF RISK 3184 02:17:12,522 --> 02:17:13,223 FACTORS FOR THAT. 3185 02:17:13,223 --> 02:17:15,625 THE SECOND PIECE IS WE'VE 3186 02:17:15,625 --> 02:17:20,997 INVITED THE IRB TO COME, THEY 3187 02:17:20,997 --> 02:17:22,465 NEVER HAVE, BUT HAVE SENT VIDEOS 3188 02:17:22,465 --> 02:17:24,868 OF PATIENTS AND FOR DOWN 3189 02:17:24,868 --> 02:17:25,502 SYNDROME REGRESSION DISORDER 3190 02:17:25,502 --> 02:17:29,572 MOST HAVE NOT HEARD OF IT. 3191 02:17:29,572 --> 02:17:32,275 WE SENT VIDEOS OF PEOPLE WITH 3192 02:17:32,275 --> 02:17:34,811 THEIR PERMISSION SHOWING HOW 3193 02:17:34,811 --> 02:17:35,979 DEBILITATING IT IS AND HAS BEEN 3194 02:17:35,979 --> 02:17:37,414 INFLUENTIAL IN GETTING OUR 3195 02:17:37,414 --> 02:17:50,608 PROTOCOLS APPROVED. 3196 02:17:50,608 --> 02:17:52,142 >> SO WE HAVE TO BREAK FOR 3197 02:17:52,142 --> 02:17:52,843 LUNCH. 3198 02:17:52,843 --> 02:17:55,546 WE WERE ABLE TO MAKE UP OR TIME. 3199 02:17:55,546 --> 02:17:57,281 AS A NOTE THERE WILL BE LUNCH 3200 02:17:57,281 --> 02:17:59,516 BREAKOUT AND I'LL TURN IT OVER 3201 02:17:59,516 --> 02:18:01,952 TO LAURIE BUT BEFORE WE DO WE 3202 02:18:01,952 --> 02:18:05,689 WANT TO THANK JONATHAN AND 3203 02:18:05,689 --> 02:18:07,925 LAURIE FOR THEIR WONDERFUL 3204 02:18:07,925 --> 02:18:08,359 PRESENTATIONS. 3205 02:18:08,359 --> 02:18:11,528 AND SO THIS CONCLUDES OUR VERY 3206 02:18:11,528 --> 02:18:12,196 EXCELLENT MORNING SESSION. 3207 02:18:12,196 --> 02:18:13,764 THANK YOU TO ALL THE SPEAKERS 3208 02:18:13,764 --> 02:18:15,266 AND ALL THE PARTICIPANTS. 3209 02:18:15,266 --> 02:18:19,169 WE DO HAVE INFORMAL BREAKOUTS 3210 02:18:19,169 --> 02:18:20,905 AND A CLINI BREAKOUT 3211 02:18:20,905 --> 02:18:26,110 IN ROOM C1 AND C2 AND COHORT 3212 02:18:26,110 --> 02:18:29,980 DEVELOPMENT BREAKOUT F1, F2, 3213 02:18:29,980 --> 02:18:31,415 GRAB YOUR LUNCH AND NETWORK WITH 3214 02:18:31,415 --> 02:18:32,449 COLLEAGUES IN THIS AREA AND 3215 02:18:32,449 --> 02:18:33,017 WE'LL SEE YOU BACK AT 1:00. 3216 02:18:33,017 --> 02:18:36,320 3217 02:23:03,053 --> 02:23:13,030 3218 02:18:39,114 --> 02:18:39,781 GOOD AFTERNOON. 3219 02:18:39,781 --> 02:18:41,450 LET'S START THE NEXT SESSION. 3220 02:18:41,450 --> 02:18:46,755 WE HAVE SOME TECHNICAL ISSUES SO 3221 02:18:46,755 --> 02:18:48,790 FOR THE SPEAKERS, YOU HAVE TO 3222 02:18:48,790 --> 02:18:50,092 SAY NEXT SLIDE TO LET THEM 3223 02:18:50,092 --> 02:18:51,493 CONTROL. 3224 02:18:51,493 --> 02:18:52,327 WE LOST CONTROL HERE 3225 02:18:52,327 --> 02:18:59,167 UNFORTUNATELY TODAY. 3226 02:18:59,167 --> 02:19:01,904 THIS SESSION IS ABOUT DATA 3227 02:19:01,904 --> 02:19:03,038 SHARING AND DATA ACCESS. 3228 02:19:03,038 --> 02:19:05,874 FROM THE MORNING SESSION WE 3229 02:19:05,874 --> 02:19:07,876 HEARD WE START TO COLLECT A LOT 3230 02:19:07,876 --> 02:19:10,879 OF DATA FROM CLINICAL TRIALS AND 3231 02:19:10,879 --> 02:19:12,247 IN THE FUTURE MORE DATA COMING 3232 02:19:12,247 --> 02:19:12,814 FROM THE COHORT DEVELOPMENT 3233 02:19:12,814 --> 02:19:17,819 PROGRAM. 3234 02:19:17,819 --> 02:19:21,356 WE HAVE THIS TOPIC RIGHT IN 3235 02:19:21,356 --> 02:19:21,556 TIME. 3236 02:19:21,556 --> 02:19:24,927 WE HAVE THREE SPEAKERS TODAY. 3237 02:19:24,927 --> 02:19:28,764 OUR FIRST SPEAKER IS MS. VALLEY 3238 02:19:28,764 --> 02:19:30,065 COTTON. 3239 02:19:30,065 --> 02:19:33,201 MY COLLEAGUE FROM NICHD. 3240 02:19:33,201 --> 02:19:33,702 VALE 3241 02:19:33,702 --> 02:19:36,371 VALERIE'S DEPUTY CHIEF OF THE 3242 02:19:36,371 --> 02:19:40,375 OFFICE OF DATA SCIENCES AND DATA 3243 02:19:40,375 --> 02:19:50,519 SHARING. 3244 02:20:04,800 --> 02:20:09,438 >> I'M FROM THE EUNICE KENNEDY 3245 02:20:09,438 --> 02:20:11,106 SHRIVER AND I'VE BEEN 3246 02:20:11,106 --> 02:20:14,276 CONTRIBUTING TO DATA STRATEGIES 3247 02:20:14,276 --> 02:20:16,111 THROUGH THE INCEPTION. 3248 02:20:16,111 --> 02:20:18,981 THE WHOLE MEET BEING HAS ALREADY 3249 02:20:18,981 --> 02:20:21,283 BEEN ABOUT DATA SHARING SO I'M 3250 02:20:21,283 --> 02:20:23,118 NOT GOING TO TELL YOU MUCH MORE 3251 02:20:23,118 --> 02:20:24,419 NEW EXCEPT FIVE AND SIX YEARS 3252 02:20:24,419 --> 02:20:25,921 AGO WHEN THE PROGRAM STARTED IT 3253 02:20:25,921 --> 02:20:26,922 WAS NOT THE NORM. 3254 02:20:26,922 --> 02:20:29,358 RESEARCHERS WERE NOT REALLY THAT 3255 02:20:29,358 --> 02:20:35,130 READY TO SHARE THEIR DATA. 3256 02:20:35,130 --> 02:20:45,674 I HAVE TO SAY I WAS INSPIRED BY 3257 02:20:54,182 --> 02:21:02,224 LISTENING TO DAVID EGGAN AND 3258 02:21:02,224 --> 02:21:06,728 THIS IS THE SLIDE I USED TO USE 3259 02:21:06,728 --> 02:21:08,363 AND SHARING EMPOWERING NEW 3260 02:21:08,363 --> 02:21:09,731 SCIENTIFIC QUESTIONS AND 3261 02:21:09,731 --> 02:21:11,166 INNOVATION, FOSTERING 3262 02:21:11,166 --> 02:21:13,835 TRANSPARENCY AND VALIDATION OF 3263 02:21:13,835 --> 02:21:17,005 RESEARCH RESULTS, INCREASING 3264 02:21:17,005 --> 02:21:19,241 STATISTICAL POWER BY COMBINING 3265 02:21:19,241 --> 02:21:22,544 MULTIPLE DATA SETS AND EXPEDITED 3266 02:21:22,544 --> 02:21:23,278 DEVELOPMENT IN THERAPEUTIC AND 3267 02:21:23,278 --> 02:21:24,379 DIAGNOSTIC STRATEGIES FOR 3268 02:21:24,379 --> 02:21:30,352 PATIENTS. 3269 02:21:30,352 --> 02:21:33,488 AND CAN LEAD TO DISCOVERIES 3270 02:21:33,488 --> 02:21:35,624 LEADING TO ENRICHING THE LIVES 3271 02:21:35,624 --> 02:21:37,059 OF PEOPLE WITH DOWN SYNDROME. 3272 02:21:37,059 --> 02:21:39,561 WE HAVE ALWAYS TAKEN DATA 3273 02:21:39,561 --> 02:21:40,996 SHARING SERIOUSLY BEFORE THE NIH 3274 02:21:40,996 --> 02:21:43,165 FINAL POLICY FOR DATA MANAGEMENT 3275 02:21:43,165 --> 02:21:44,699 SHARING WENT INTO EFFECT LAST 3276 02:21:44,699 --> 02:21:44,900 YEAR. 3277 02:21:44,900 --> 02:21:50,672 THAT POLICY NOW REQUIRES ALL 3278 02:21:50,672 --> 02:21:59,915 RESEARCHERS TOE -- TO BROAD AND 3279 02:21:59,915 --> 02:22:00,549 RAPID DATA SHARING THROUGH DATA 3280 02:22:00,549 --> 02:22:04,352 REPOSITORIES. 3281 02:22:04,352 --> 02:22:07,756 HERE'S AN OVERVIEW OF THE POLICY 3282 02:22:07,756 --> 02:22:10,459 DON'T HAVE TIME TO DO A FULL 3283 02:22:10,459 --> 02:22:12,160 CRASH COURSE ON THE DATA 3284 02:22:12,160 --> 02:22:12,727 MANAGEMENT POLICY. 3285 02:22:12,727 --> 02:22:14,863 I WANTED TO SHARE HIGH LEVEL 3286 02:22:14,863 --> 02:22:16,865 TIPS AND REMINDERS ABOUT THE 3287 02:22:16,865 --> 02:22:17,165 POLICY. 3288 02:22:17,165 --> 02:22:19,568 SO FIRST OFF, REMEMBER THAT GOOD 3289 02:22:19,568 --> 02:22:21,236 DATA MANAGEMENT AND SHARING IS 3290 02:22:21,236 --> 02:22:22,270 CRITICAL TO GOOD RESEARCH. 3291 02:22:22,270 --> 02:22:23,972 IN FACT, DATA MANAGEMENT SHARING 3292 02:22:23,972 --> 02:22:25,407 IS INHERENT TO RESEARCH. 3293 02:22:25,407 --> 02:22:27,943 SOMETIMES WE HERE THIS IS AN 3294 02:22:27,943 --> 02:22:28,510 ADMINISTRATIVE REQUIREMENT. 3295 02:22:28,510 --> 02:22:29,544 IT HAS NOTHING TO DO WITH MY 3296 02:22:29,544 --> 02:22:32,180 RESEARCH AND THAT'S NOT TRUE. 3297 02:22:32,180 --> 02:22:34,483 THE GOAL OF DATA SHARING IS TO 3298 02:22:34,483 --> 02:22:36,184 SUPPORT THE GOAL WE TALKED ABOUT 3299 02:22:36,184 --> 02:22:38,019 TO ACCELERATE SCIENTIFIC 3300 02:22:38,019 --> 02:22:38,320 PROGRESS. 3301 02:22:38,320 --> 02:22:41,890 YOUR DATA MANAGEMENT SHARING 3302 02:22:41,890 --> 02:22:43,458 PLAN SHOULD SUPPORT THAT GOAL. 3303 02:22:43,458 --> 02:22:46,561 YOU SHOULD SEE IF YOU'RE AN 3304 02:22:46,561 --> 02:22:47,195 NIH-FUNDED RESEARCHER THERE'S 3305 02:22:47,195 --> 02:22:51,700 WAYS TO ORGANIZE THE SHARING 3306 02:22:51,700 --> 02:22:51,900 PLAN. 3307 02:22:51,900 --> 02:22:53,101 REGARDLESS OF THE STRUCTURE MAKE 3308 02:22:53,101 --> 02:22:55,670 SURE YOU'RE CLEAR IN WHAT YOU'RE 3309 02:22:55,670 --> 02:22:57,539 TRYING TO DO. 3310 02:22:57,539 --> 02:23:01,376 NOT JUST FOR NIH BUT FOUR AS 3311 02:23:01,376 --> 02:23:03,078 RESEARCHER TO UNDERSTAND HOW TO 3312 02:23:03,078 --> 02:23:04,045 IMPLEMENT YOUR PLAN. 3313 02:23:04,045 --> 02:23:06,047 THE PLANS ARE MADE TO BE PUBLIC. 3314 02:23:06,047 --> 02:23:07,649 EVERYBODY IN THE ROOM COULD READ 3315 02:23:07,649 --> 02:23:09,885 THE DATA MANAGEMENT SHARING PLAN 3316 02:23:09,885 --> 02:23:11,453 AND KNOW WHAT'S COMING AND MAKE 3317 02:23:11,453 --> 02:23:11,953 SURE WHICH DATA YOU'RE 3318 02:23:11,953 --> 02:23:16,391 GENERATING AND SHARING. 3319 02:23:16,391 --> 02:23:19,327 WHEN YOU'LL SHARE THE DATA AND 3320 02:23:19,327 --> 02:23:20,462 AS SOON AS POSSIBLE BUT NO LATER 3321 02:23:20,462 --> 02:23:22,998 THAN PUBLICATION OR END OF THE 3322 02:23:22,998 --> 02:23:23,198 WARD. 3323 02:23:23,198 --> 02:23:24,866 WHERE YOU'LL SHARE YOUR DATA AND 3324 02:23:24,866 --> 02:23:27,702 THAT'S ESSENTIALLY WHICH DATA 3325 02:23:27,702 --> 02:23:29,204 REPOSITORIES ARE YOU USING AND 3326 02:23:29,204 --> 02:23:31,239 HOW AND INCLUDING THINGS LIKE 3327 02:23:31,239 --> 02:23:33,642 WILL THE DATA BE OPEN ACCESS OR 3328 02:23:33,642 --> 02:23:35,076 CONTROLLED BY THE DATA 3329 02:23:35,076 --> 02:23:35,377 REPOSITORY. 3330 02:23:35,377 --> 02:23:37,512 REFERRED TO THE DATA MANAGEMENT 3331 02:23:37,512 --> 02:23:39,080 SHARING MATERIALS WHEN YOU'RE IN 3332 02:23:39,080 --> 02:23:40,549 DOUBT, WHEN HAVE YOU A STICKY 3333 02:23:40,549 --> 02:23:43,185 ISSUE YOU'RE NOT SURE HOW TO 3334 02:23:43,185 --> 02:23:45,320 WORK THROUGH, YOU PROBABLY HAVE 3335 02:23:45,320 --> 02:23:45,921 GUIDANCE. 3336 02:23:45,921 --> 02:23:47,923 IT'S A LITTLE BIT OVERWHELMING. 3337 02:23:47,923 --> 02:23:49,591 WE HAVE A NOTICE THAT EXPLAINS 3338 02:23:49,591 --> 02:23:51,026 HOW TO THINK THROUGH PRIVACY 3339 02:23:51,026 --> 02:23:51,393 CONSIDERATIONS. 3340 02:23:51,393 --> 02:23:53,562 WE HAVE A GUIDE NOTICE THAT 3341 02:23:53,562 --> 02:23:55,730 TALKS ABOUT SHARING DATA FROM A 3342 02:23:55,730 --> 02:23:56,298 TRIBAL COMMUNITY. 3343 02:23:56,298 --> 02:23:58,733 AND MAYBE YOU'RE NOT CLEAR ON 3344 02:23:58,733 --> 02:24:00,368 WHAT WE MEANT BY DATA SHARING OR 3345 02:24:00,368 --> 02:24:02,537 SCIENTIFIC DATA. 3346 02:24:02,537 --> 02:24:04,973 WE HAVE DEFINITIONS FOR THOSE 3347 02:24:04,973 --> 02:24:08,810 THINGS IN THE POLICY MATERIALS. 3348 02:24:08,810 --> 02:24:09,844 FINALLY, THE PRIMARY EXPECTATION 3349 02:24:09,844 --> 02:24:14,216 IS RESEARCHERS MAXIMIZE THE 3350 02:24:14,216 --> 02:24:14,950 APPROPRIATE SHARING OF 3351 02:24:14,950 --> 02:24:16,051 SCIENTIFIC DATA. 3352 02:24:16,051 --> 02:24:17,619 IF THERE'S SOME REASON WHY YOU 3353 02:24:17,619 --> 02:24:18,486 CAN'T SHARE ALL THE DATA YOU 3354 02:24:18,486 --> 02:24:20,322 HAVE TO EXPLAIN WHY. 3355 02:24:20,322 --> 02:24:26,962 THE WHOLE PURPOSE OF THE PLAN IS 3356 02:24:26,962 --> 02:24:27,596 TO SHARE ALL YOU'RE SCIENTIFIC 3357 02:24:27,596 --> 02:24:29,197 DATA UNLESS YOU HAVE A REASON 3358 02:24:29,197 --> 02:24:29,998 NOT TO. 3359 02:24:29,998 --> 02:24:31,733 WE CALL THESE JUSTIFIABLE 3360 02:24:31,733 --> 02:24:32,367 LIMITATIONS IN THE POLICY 3361 02:24:32,367 --> 02:24:34,970 FRAMEWORK. 3362 02:24:34,970 --> 02:24:36,404 WHAT'S BEAUTIFUL ABOUT THIS 3363 02:24:36,404 --> 02:24:37,439 APPROACH IS IT GIVES NIH THE 3364 02:24:37,439 --> 02:24:39,241 OPPORTUNITY TO WORK WITH YOU. 3365 02:24:39,241 --> 02:24:41,209 AND TO MAKE SURE THAT THESE 3366 02:24:41,209 --> 02:24:44,212 ISSUES ARE REAL OPPOSED TO A 3367 02:24:44,212 --> 02:24:45,347 PERCEIVED BARRIER AND IF THERE'S 3368 02:24:45,347 --> 02:24:49,451 A SOLUTION TO YOUR CONCERN. 3369 02:24:49,451 --> 02:24:53,221 IN OUR EXAMPLE WE WORK WITH THE 3370 02:24:53,221 --> 02:24:55,156 DATA REPOSITORY. 3371 02:24:55,156 --> 02:24:57,559 THE DATA REPOSITORY HAS STANDARD 3372 02:24:57,559 --> 02:24:58,860 APPROACHES FOR DEIDENTIFICATION 3373 02:24:58,860 --> 02:25:00,829 AND CONTROLLED ACCESS APPROACH 3374 02:25:00,829 --> 02:25:02,397 AND MAYBE IT ADDRESSES SOME OF 3375 02:25:02,397 --> 02:25:03,832 YOUR CONCERNS. 3376 02:25:03,832 --> 02:25:05,667 ONE THEME OF THE PANEL WAS 3377 02:25:05,667 --> 02:25:06,268 SUPPOSED TO BE INTERNATIONAL 3378 02:25:06,268 --> 02:25:07,269 DATA SHARING. 3379 02:25:07,269 --> 02:25:10,672 I WANT TO SAY NIH DOES NOT THINK 3380 02:25:10,672 --> 02:25:11,640 ABOUT NATIONAL DATA SHARING FROM 3381 02:25:11,640 --> 02:25:13,341 WAYS WE THINK ABOUT THE ENTIRE 3382 02:25:13,341 --> 02:25:13,575 POLICY. 3383 02:25:13,575 --> 02:25:17,912 YOU'RE EXPECTED TO MAXIMIZE THE 3384 02:25:17,912 --> 02:25:18,947 SHARING OF YOUR SCIENTIFIC DATA 3385 02:25:18,947 --> 02:25:21,182 REGARDLESS OF WHERE IT'S COMING 3386 02:25:21,182 --> 02:25:21,449 FROM. 3387 02:25:21,449 --> 02:25:24,185 ALL NIH RECIPIENTS ARE 3388 02:25:24,185 --> 02:25:25,620 RESPONSIBLE FOR NAVIGATING NIH 3389 02:25:25,620 --> 02:25:27,856 POLICIES WITHIN THEIR LOCAL 3390 02:25:27,856 --> 02:25:29,457 REQUIREMENTS AND POLICIES. 3391 02:25:29,457 --> 02:25:32,360 SO THAT GOES THE SAME FOR DATA 3392 02:25:32,360 --> 02:25:34,529 SHARING AND IF THERE IS A LAW OR 3393 02:25:34,529 --> 02:25:36,431 REASON WHY YOU CAN'T SHARE THE 3394 02:25:36,431 --> 02:25:40,101 DATA OR SUBSET OF THE DATA, 3395 02:25:40,101 --> 02:25:41,102 WRITE THAT IN YOUR DATA 3396 02:25:41,102 --> 02:25:42,637 MANAGEMENT AND SHARING PLAN FOR 3397 02:25:42,637 --> 02:25:43,271 NIH TO REVIEW AND WORK THROUGH 3398 02:25:43,271 --> 02:25:52,747 TOGETHER. 3399 02:25:52,747 --> 02:25:56,051 THE DEFINITION OF DATA 3400 02:25:56,051 --> 02:25:57,419 REPOSITORIES BECAUSE SHARING TO 3401 02:25:57,419 --> 02:25:58,853 MAKE DATA AVAILABLE TO THE BROAD 3402 02:25:58,853 --> 02:26:03,258 RESEARCH COMMUNITY OR PUBLIC SO 3403 02:26:03,258 --> 02:26:05,226 SHARING DATA JUST FROM YOUR 3404 02:26:05,226 --> 02:26:06,695 LOCAL INSTITUTIONAL SERVER NO 3405 02:26:06,695 --> 02:26:07,962 LONGER MEETS THE DEFINITION OF 3406 02:26:07,962 --> 02:26:08,830 DATA SHARING. 3407 02:26:08,830 --> 02:26:10,131 IN PART THIS IS WHY SEVERAL 3408 02:26:10,131 --> 02:26:13,802 YEARS AGO WE CHARGED THE INCLUDE 3409 02:26:13,802 --> 02:26:16,237 DATA COORDINATING CENTER AS THE 3410 02:26:16,237 --> 02:26:17,505 PRIMARY REPOSITORY FOR COHORT 3411 02:26:17,505 --> 02:26:19,908 DATA AND FOR INTEGRATING WITH 3412 02:26:19,908 --> 02:26:21,309 THE LARGER NIH ECO SYSTEM AND 3413 02:26:21,309 --> 02:26:26,948 TALK ABOUT WHAT THAT MEANS IN A 3414 02:26:26,948 --> 02:26:29,017 MINUTE. 3415 02:26:29,017 --> 02:26:32,987 AND DATA REPOSITORIES BUILD 3416 02:26:32,987 --> 02:26:35,156 COMMUNITIES AND FOSI FOR 3417 02:26:35,156 --> 02:26:37,258 COLLABORATION AND TRAINING AND 3418 02:26:37,258 --> 02:26:38,927 GET TO INNOVATE AND DESIGN 3419 02:26:38,927 --> 02:26:41,796 SPECIFIC SERVICES AND FEATURES 3420 02:26:41,796 --> 02:26:44,833 THAT ADDRESS THE NEEDS OF THEIR 3421 02:26:44,833 --> 02:26:47,235 STAKEHOLDER AND THE RESEARCHERS 3422 02:26:47,235 --> 02:26:51,172 AND PARTICIPANTS AND BROADER 3423 02:26:51,172 --> 02:26:53,041 PUBLIC AND USE COMMON FORMATS OR 3424 02:26:53,041 --> 02:26:55,176 OTHER STANDARDS AND USING THOSE 3425 02:26:55,176 --> 02:26:56,678 TO IMPROVE SEARCH, VISUALIZATION 3426 02:26:56,678 --> 02:26:57,679 AND COMBINED ANALYSIS AND 3427 02:26:57,679 --> 02:27:03,718 FACILITATE PLANNING AHEAD. 3428 02:27:03,718 --> 02:27:06,554 AND LEARNING WHAT THE PROCESS 3429 02:27:06,554 --> 02:27:08,289 FOR DATA SUBMISSION AND THEY'RE 3430 02:27:08,289 --> 02:27:08,890 CONTINUOUS AND IMPROVING OVER 3431 02:27:08,890 --> 02:27:13,795 TIME. 3432 02:27:13,795 --> 02:27:16,931 THEY ACHIEVED ALL OF THESE AND 3433 02:27:16,931 --> 02:27:18,199 BUILT COMMUNITY THROUGH THEIR 3434 02:27:18,199 --> 02:27:19,801 ONLINE AND IN PERSON TRAINING 3435 02:27:19,801 --> 02:27:20,435 EVENTS AND THROUGH MEETINGS LIKE 3436 02:27:20,435 --> 02:27:22,637 THIS. 3437 02:27:22,637 --> 02:27:25,607 WE KNOW VATED TOGETHER TO DESIGN 3438 02:27:25,607 --> 02:27:28,910 A MULTI-TIERED DATA ACCESS 3439 02:27:28,910 --> 02:27:31,846 APPROACH FOR THE INCLUDE DATA 3440 02:27:31,846 --> 02:27:33,548 HUB AND ACCESSED TIER WHERE 3441 02:27:33,548 --> 02:27:34,582 ANYONE CAN ACCESS AS LONG AS 3442 02:27:34,582 --> 02:27:35,483 THEY AGREE TO TERMS AND 3443 02:27:35,483 --> 02:27:37,252 CONDITIONS AND CONTROLLED ACCESS 3444 02:27:37,252 --> 02:27:38,586 APPROACH WHERE ONLY APPROVED 3445 02:27:38,586 --> 02:27:44,926 RESEARCHERS CAN AC IS THES -- 3446 02:27:44,926 --> 02:27:46,661 ACCESS THE DATA AFTER THE 3447 02:27:46,661 --> 02:27:47,095 GENOMIC DATA. 3448 02:27:47,095 --> 02:27:50,498 AND IS BALANCES THE NEED FOR 3449 02:27:50,498 --> 02:27:54,369 ACCESS OF DATA TO THE BROAD 3450 02:27:54,369 --> 02:27:56,204 PUBLIC TO FAMILIES AND ADVOCATES 3451 02:27:56,204 --> 02:28:00,708 AND RESEARCHERS AND THAT NED FOR 3452 02:28:00,708 --> 02:28:02,577 TRANSPARENCY TO THE PUBLIC WITH 3453 02:28:02,577 --> 02:28:04,345 THE NEED TO PROTECT PRIVACY. 3454 02:28:04,345 --> 02:28:08,116 YOU SAW YESTERDAY THE PORTAL 3455 02:28:08,116 --> 02:28:09,951 ENABLES VISUALIZATIONS AND THE 3456 02:28:09,951 --> 02:28:11,853 INCLUDE DCC HAS STANDARD 3457 02:28:11,853 --> 02:28:12,987 SUBMISSION PROCESS FOR HELPING 3458 02:28:12,987 --> 02:28:13,555 RESEARCHERS GET THEIR DATA 3459 02:28:13,555 --> 02:28:18,793 SHARED. 3460 02:28:18,793 --> 02:28:20,662 INCLUDE DOES NOT LIVE IN A 3461 02:28:20,662 --> 02:28:21,062 VACUUM. 3462 02:28:21,062 --> 02:28:23,198 RESEARCHERS MUST BE ABLE TO 3463 02:28:23,198 --> 02:28:25,767 INTEGRATE FROM MULTIPLE 3464 02:28:25,767 --> 02:28:26,801 REPOSITORIES TO ANSWER IMPORTANT 3465 02:28:26,801 --> 02:28:28,369 SCIENTIFIC QUESTIONS AND FOR 3466 02:28:28,369 --> 02:28:30,805 INCLUDE IT'S EXTRA CRITICAL 3467 02:28:30,805 --> 02:28:31,806 BECAUSE THERE'S A WIDE VARIETY 3468 02:28:31,806 --> 02:28:33,908 OF CONDITIONS THAT IMPACT 3469 02:28:33,908 --> 02:28:37,312 INDIVIDUALS WITH DOWN SYNDROME. 3470 02:28:37,312 --> 02:28:38,913 WE ALWAYS HAD IN MIND 3471 02:28:38,913 --> 02:28:40,181 RESEARCHERS NEED TO INCLUDE IT 3472 02:28:40,181 --> 02:28:43,251 TO ADDRESS QUESTIONS ABOUT 3473 02:28:43,251 --> 02:28:52,393 GENETIC VARIANTS THAT UNDERPIN 3474 02:28:52,393 --> 02:28:55,363 GENETIC DISEASE AND PREDICT 3475 02:28:55,363 --> 02:28:56,598 DEMENTIA IN WILL HAVES WITH DOWN 3476 02:28:56,598 --> 02:28:58,233 SYNDROME AND STUDY THE 3477 02:28:58,233 --> 02:28:59,267 CONNECTION BETWEEN AUTISM AND 3478 02:28:59,267 --> 02:29:03,171 DOWN SYNDROME. 3479 02:29:03,171 --> 02:29:05,773 WE'RE ACHIEVING THIS THROUGH 3480 02:29:05,773 --> 02:29:06,774 INTEGRATION WITH A CLOUD 3481 02:29:06,774 --> 02:29:09,010 ANALYSIS PLATFORM. 3482 02:29:09,010 --> 02:29:12,847 THE INCLUDE DATA HUB INCLUDES A 3483 02:29:12,847 --> 02:29:13,715 CONNECTION TO THEY'RE CALLED 3484 02:29:13,715 --> 02:29:14,449 CLOUD ANALYSIS PLATFORMS. 3485 02:29:14,449 --> 02:29:17,685 SOME PEOPLE ARE STARTING TO CALL 3486 02:29:17,685 --> 02:29:20,388 THEM WORK SPACES AND THAT'S WHAT 3487 02:29:20,388 --> 02:29:25,226 YOU HEARD A LITTLE BIT ABOUT. 3488 02:29:25,226 --> 02:29:30,632 WE'RE USING APPLICATION 3489 02:29:30,632 --> 02:29:32,767 INTEGRATION INTERFACES TO ENABLE 3490 02:29:32,767 --> 02:29:34,202 THE EXCHANGE OF DATA ACROSS 3491 02:29:34,202 --> 02:29:34,469 SYSTEMS. 3492 02:29:34,469 --> 02:29:36,371 WHAT THIS IS DOING FOR INCLUDE 3493 02:29:36,371 --> 02:29:39,874 NOW A RESEARCHER CAN EASILY 3494 02:29:39,874 --> 02:29:40,775 CO-ANALYZE INCLUDE DATA WITH 3495 02:29:40,775 --> 02:29:43,278 KIDS FIRST DATA. 3496 02:29:43,278 --> 02:29:46,381 AS OF A WEEK AGO IT CAN 3497 02:29:46,381 --> 02:29:48,816 INTEGRATE WITH THE READ ARCHIVE. 3498 02:29:48,816 --> 02:29:50,852 WE'VE UNLOCKED MORE DATA THAT 3499 02:29:50,852 --> 02:29:53,087 CAN EASILY FLOW INTO THE 3500 02:29:53,087 --> 02:29:54,155 ANALYSIS ENVIRONMENTS FOR LARGE 3501 02:29:54,155 --> 02:30:04,632 SCALE CLOUD-BASED ANALYSIS. 3502 02:30:22,050 --> 02:30:23,351 AFTER THE CLINICAL TRIAL AND 3503 02:30:23,351 --> 02:30:25,386 ANOTHER STUDY DID OMICS. 3504 02:30:25,386 --> 02:30:27,221 THIS IS ABOUT LETTING 3505 02:30:27,221 --> 02:30:29,624 RESEARCHERS HAVE SOME AWARENESS 3506 02:30:29,624 --> 02:30:31,225 OF WHEN PARTICIPANTS ARE TE SAME 3507 02:30:31,225 --> 02:30:32,660 AND THIS IS A CHALLENGE BECAUSE 3508 02:30:32,660 --> 02:30:35,163 THE INCLUDE DATA UP AND OTHER 3509 02:30:35,163 --> 02:30:36,331 DATA REPOSITORIES ONLY SHARE 3510 02:30:36,331 --> 02:30:37,332 DEIDENTIFIED DATA. 3511 02:30:37,332 --> 02:30:40,635 WE HAVE TO THINK OF SOME RECORD 3512 02:30:40,635 --> 02:30:42,036 LINKAGE SOLUTION THAT DIDN'T 3513 02:30:42,036 --> 02:30:43,738 EXPOSE PERSONAL INFORMATION. 3514 02:30:43,738 --> 02:30:46,574 ON THE NIH SIDE WE SAID, OKAY, 3515 02:30:46,574 --> 02:30:48,376 WE CAN THINK OF DOING THIS BUT 3516 02:30:48,376 --> 02:30:51,846 HOW WILL WE NAVIGATE ALL THESE 3517 02:30:51,846 --> 02:30:53,414 RISKS AND CORROBORATE THE 3518 02:30:53,414 --> 02:30:55,583 INTERSECTION OF POLICIES THAT 3519 02:30:55,583 --> 02:30:56,517 COME WITH EACH INDIVIDUAL DATA 3520 02:30:56,517 --> 02:30:56,818 SET. 3521 02:30:56,818 --> 02:31:02,724 TOGETHER THE DCC AND INCLUDE 3522 02:31:02,724 --> 02:31:08,763 STEERING COMMITTEE AND WE WORKED 3523 02:31:08,763 --> 02:31:12,033 THROUGH A CHECKLIST OF DATA 3524 02:31:12,033 --> 02:31:13,735 GOVERNANCE CONSIDERATIONS AND 3525 02:31:13,735 --> 02:31:14,569 TECHNICAL CONSIDERATIONS TO SORT 3526 02:31:14,569 --> 02:31:18,306 THROUGH HOW WE WERE GOING TO 3527 02:31:18,306 --> 02:31:19,307 SOLVE ALL THESE CONCERNS. 3528 02:31:19,307 --> 02:31:21,876 AND AFTER WORKING THROUGH THAT 3529 02:31:21,876 --> 02:31:23,444 CHECKLIST, WE ARE HAPPY TO SAY 3530 02:31:23,444 --> 02:31:27,949 AND I PROMISE YOU I ONLY HAVE 3531 02:31:27,949 --> 02:31:29,951 TWO APPROVALS LEFT TO GET THIS 3532 02:31:29,951 --> 02:31:30,218 LIVE. 3533 02:31:30,218 --> 02:31:33,488 WE'LL SOON BE IMPLEMENTING THE 3534 02:31:33,488 --> 02:31:34,922 GLOBAL UNIQUE IDENTIFIERS IN THE 3535 02:31:34,922 --> 02:31:36,057 INCLUDE DATA HUB. 3536 02:31:36,057 --> 02:31:39,727 AND THIS TOOK A COUPLE YEARS TO 3537 02:31:39,727 --> 02:31:40,428 IMPLEMENT BECAUSE THERE IS A LOT 3538 02:31:40,428 --> 02:31:42,030 OF TO THINK THROUGH. 3539 02:31:42,030 --> 02:31:44,065 I WANT TO HIGHLIGHT A FEW KEY 3540 02:31:44,065 --> 02:31:45,566 PARTS OF THIS STRATEGY. 3541 02:31:45,566 --> 02:31:49,871 THE NDA TOOL IS AN NIH-OWNED AND 3542 02:31:49,871 --> 02:31:52,840 POLICY PRESERVING RECORD LINKAGE 3543 02:31:52,840 --> 02:31:55,943 TECHNOLOGY ALREADY USED BY FORGE 3544 02:31:55,943 --> 02:31:57,011 DATA REPOSITORY MAY ALREADY USE 3545 02:31:57,011 --> 02:31:59,347 AND ALREADY USED BY MANY OF OUR 3546 02:31:59,347 --> 02:32:00,515 INCLUDE RESEARCHERS. 3547 02:32:00,515 --> 02:32:02,417 IT ENABLES RESEARCHERS TO LINK 3548 02:32:02,417 --> 02:32:04,786 DATA FROM MULTIPLE DATA SETS TO 3549 02:32:04,786 --> 02:32:08,356 THE SAME INDIVIDUAL WITHOUT 3550 02:32:08,356 --> 02:32:09,490 REVIEWING PII. 3551 02:32:09,490 --> 02:32:11,325 DATA WILL ONLY BE SHARED THROUGH 3552 02:32:11,325 --> 02:32:13,895 A CONTROLLED ACCESS. 3553 02:32:13,895 --> 02:32:15,730 THEY'RE SENSITIVE ENOUGH TO HAVE 3554 02:32:15,730 --> 02:32:17,732 THE DATA USE AGREEMENT WE TALKED 3555 02:32:17,732 --> 02:32:20,001 ABOUT AND DATA SUBMITTERS WILL 3556 02:32:20,001 --> 02:32:24,839 BE RESPONSIBLE FOR WHETHER 3557 02:32:24,839 --> 02:32:25,840 DETERMINING IF THEY'RE 3558 02:32:25,840 --> 02:32:26,674 APPROPRIATE. 3559 02:32:26,674 --> 02:32:27,809 WE WON'T REQUIRE THEM FROM 3560 02:32:27,809 --> 02:32:28,076 EVERYONE. 3561 02:32:28,076 --> 02:32:31,079 WE NEED TO MAKE SURE THE DATA 3562 02:32:31,079 --> 02:32:31,813 SUBMITTER DOES EVERYTHING WE 3563 02:32:31,813 --> 02:32:32,080 NEED. 3564 02:32:32,080 --> 02:32:34,348 DO THEY NEED TO GO TO THE IRB 3565 02:32:34,348 --> 02:32:35,349 AND HAVE DISCUSSION WHAT THIS 3566 02:32:35,349 --> 02:32:37,351 MEANS AND WE'LL BE PUBLISHING 3567 02:32:37,351 --> 02:32:40,354 CONSENT LANGUAGE INCORPORATED 3568 02:32:40,354 --> 02:32:47,361 INTO CONSENT FORMENTZ FORMS TO 3569 02:32:47,361 --> 02:32:51,399 ESTABLISH HOW GU GUIDs WILL BE 3570 02:32:51,399 --> 02:32:52,600 USED AND THERE'S A LOT WE 3571 02:32:52,600 --> 02:32:54,836 PROBABLY CAN'T TALK ABOUT TODAY 3572 02:32:54,836 --> 02:32:56,304 BUT IN UPCOMING INCLUDE WEBINARS 3573 02:32:56,304 --> 02:32:59,707 WE CAN ANSWER QUESTIONS ON THIS. 3574 02:32:59,707 --> 02:33:01,275 THIS IS JUST SOME QR CODES WITH 3575 02:33:01,275 --> 02:33:11,486 RESOURCES THAT I TALKED ABOUT. 3576 02:33:11,486 --> 02:33:13,588 >> THANKS, VALERIE. 3577 02:33:13,588 --> 02:33:16,224 VALERIE SHARED WITH US THE DATA 3578 02:33:16,224 --> 02:33:20,361 SHARING ON NIH SO NEXT WE MOVE 3579 02:33:20,361 --> 02:33:22,296 ON TO DATA CONTRIBUTORS 3580 02:33:22,296 --> 02:33:27,101 PERSPECTIVE OUR NEXT SPEAKER IS 3581 02:33:27,101 --> 02:33:28,803 FROM EMORY UNIVERSITY AND THE 3582 02:33:28,803 --> 02:33:33,541 HER TALK IS IMPROVING 3583 02:33:33,541 --> 02:33:34,108 COLLABORATION PLANNING FOR 3584 02:33:34,108 --> 02:33:44,519 EFFECTIVE DATA SHARING. 3585 02:33:51,526 --> 02:33:54,462 >> MY SLIDES HAVE FAIRLY SIMPLE 3586 02:33:54,462 --> 02:33:55,563 THIS MORNING. 3587 02:33:55,563 --> 02:33:58,132 I WANT TO THANK THE ORGANIZERS 3588 02:33:58,132 --> 02:34:00,368 AND NIH FOR INVITING ME PRESENT 3589 02:34:00,368 --> 02:34:01,769 AND HOPE THEY'LL HELP FACILITATE 3590 02:34:01,769 --> 02:34:02,837 SOME DISCUSSION LATER. 3591 02:34:02,837 --> 02:34:04,438 I'LL TELL YOU SOME OF THE 3592 02:34:04,438 --> 02:34:08,376 HURDLES WE'VE GONE THROUGH IN 3593 02:34:08,376 --> 02:34:11,512 BEING ABLE TO SHARE OUR DATA BUT 3594 02:34:11,512 --> 02:34:14,916 I'M INTERESTED TO HEAR FROM YOU 3595 02:34:14,916 --> 02:34:16,484 ALL THINGS YOU'VE DEAL WITH. 3596 02:34:16,484 --> 02:34:17,685 IMPROVING COLLABORATION AND 3597 02:34:17,685 --> 02:34:20,388 PLANNING FOR EFFECTIVE DATA 3598 02:34:20,388 --> 02:34:23,891 SHARING. 3599 02:34:23,891 --> 02:34:26,427 WE TALKED ABOUT THE IMPORTANCE 3600 02:34:26,427 --> 02:34:27,295 OF DATA SHARING. 3601 02:34:27,295 --> 02:34:29,297 IT'S CRUCIAL TO ADVANCE 3602 02:34:29,297 --> 02:34:29,597 RESEARCH. 3603 02:34:29,597 --> 02:34:31,999 IT CERTAINLY MAKES OUR 3604 02:34:31,999 --> 02:34:32,834 PARTICIPANTS' CONTRIBUTIONS MORE 3605 02:34:32,834 --> 02:34:33,134 VALUABLE. 3606 02:34:33,134 --> 02:34:35,403 WE'RE ABLE TO USE THAT DATA 3607 02:34:35,403 --> 02:34:40,374 ACROSS MULTIPLE STUDIES TO 3608 02:34:40,374 --> 02:34:47,381 ANSWER DIFFERENT QUESTIONS AND 3609 02:34:47,381 --> 02:34:50,184 CAN BE A COST EFFECTIVE MEASURE 3610 02:34:50,184 --> 02:34:51,452 TO INCREASE SAMPLE SIZES. 3611 02:34:51,452 --> 02:34:53,421 IF OTHERS ARE USING THE SAME 3612 02:34:53,421 --> 02:34:54,722 MEASURES YOU'RE USING INSTEAD OF 3613 02:34:54,722 --> 02:34:56,490 STRONG REACH OUT AND RECRUIT A 3614 02:34:56,490 --> 02:34:58,459 WHOLE SET OF PARTICIPANTS YOU 3615 02:34:58,459 --> 02:35:08,970 COULD POSSIBLY USE THAT DATA. 3616 02:35:14,141 --> 02:35:15,376 THEY STARTED DOWN SYNDROME 3617 02:35:15,376 --> 02:35:17,812 RESEARCH IN THE LATE 1980s AND 3618 02:35:17,812 --> 02:35:18,746 I'VE BEEN DOING RESEARCH THERE 3619 02:35:18,746 --> 02:35:19,914 ALMOST 20 YEARS. 3620 02:35:19,914 --> 02:35:22,183 SOME OF THE THINGS WE HAD TO 3621 02:35:22,183 --> 02:35:24,485 OVERCOME AS FAR AS THE HURDLES 3622 02:35:24,485 --> 02:35:25,486 TO BE ABLE TO SHARE DATA YOU 3623 02:35:25,486 --> 02:35:30,858 GUYS WON'T HAVE TO DO NOW. 3624 02:35:30,858 --> 02:35:33,494 SOME ARE STILL IMPORTANT FOR TO 3625 02:35:33,494 --> 02:35:35,429 YOU CONSIDER BEFORE YOU START 3626 02:35:35,429 --> 02:35:38,099 DEVELOPING YOUR SHARING PLAN AND 3627 02:35:38,099 --> 02:35:40,368 CERTAINLY BEFORE YOU START 3628 02:35:40,368 --> 02:35:41,669 WRITING THE CONSENT FORMS YOUR 3629 02:35:41,669 --> 02:35:43,671 PARTICIPANTS ARE GOING TO SIGN. 3630 02:35:43,671 --> 02:35:45,640 THINKING HOW TO THE DATA WILL BE 3631 02:35:45,640 --> 02:35:46,340 STORED. 3632 02:35:46,340 --> 02:35:47,642 WILL YOU KEEP EVERYTHING IN 3633 02:35:47,642 --> 02:35:47,842 HOUSE? 3634 02:35:47,842 --> 02:35:51,245 WILL YOU SEND ALL THE DATA TO A 3635 02:35:51,245 --> 02:35:54,448 DATA REPOSITORY, A BIO BANK 3636 02:35:54,448 --> 02:35:54,882 SOMEWHERE? 3637 02:35:54,882 --> 02:35:56,884 WHO WILL ULTIMATELY HAVE ACCESS 3638 02:35:56,884 --> 02:35:58,286 TO THE DATA AND WHO WILL MAKE 3639 02:35:58,286 --> 02:35:59,754 DECISIONS ABOUT WHO HAS ACCESS 3640 02:35:59,754 --> 02:36:01,088 FOR THE DATA AND THEN FUTURE 3641 02:36:01,088 --> 02:36:09,530 PLANS FOR THE DATA. 3642 02:36:09,530 --> 02:36:10,831 TO TALK A LITTLE BIT ABOUT 3643 02:36:10,831 --> 02:36:12,466 CONSENT AND WE HEARD GREAT 3644 02:36:12,466 --> 02:36:14,502 COMMENTS ABOUT THINGS HOW TO 3645 02:36:14,502 --> 02:36:16,137 MAKE CONSENT AVAILABLE TO OUR 3646 02:36:16,137 --> 02:36:17,371 PARTICIPANTS, I JUST WANT TO 3647 02:36:17,371 --> 02:36:18,639 THINK ABOUT SOME THINGS RELATED 3648 02:36:18,639 --> 02:36:20,374 TO DATA SHARING YOU MIGHT WANT 3649 02:36:20,374 --> 02:36:22,243 TO MAKE SURE HAVE YOU IN THE 3650 02:36:22,243 --> 02:36:23,077 CONSENT FORMS. 3651 02:36:23,077 --> 02:36:25,046 CODED VERSUS DE-IDENTIFIED. 3652 02:36:25,046 --> 02:36:26,013 I'M GOING TO TALK A LITTLE BIT 3653 02:36:26,013 --> 02:36:30,151 MORE ABOUT THAT ON THE NEXT 3654 02:36:30,151 --> 02:36:32,286 SLIDE, AGAIN, MENTIONING THE 3655 02:36:32,286 --> 02:36:33,287 LENGTH OF TIME STORED. 3656 02:36:33,287 --> 02:36:35,423 MAY THINK YOU'RE ONLY GOING TO 3657 02:36:35,423 --> 02:36:38,259 NEED THIS DATA FOR FIVE YEARS. 3658 02:36:38,259 --> 02:36:39,527 IF YOU PUT THAT INTO THE CONSENT 3659 02:36:39,527 --> 02:36:41,429 FORM YOU'RE GOING TO USE THE 3660 02:36:41,429 --> 02:36:43,230 DATA FOR FIVE YEARS AND THEN 3661 02:36:43,230 --> 02:36:44,799 THERE'S DELAYS IN RECRUITMENT OR 3662 02:36:44,799 --> 02:36:46,934 SOMETHING HAPPENS, AND THEN YOUR 3663 02:36:46,934 --> 02:36:49,770 FIVE YEARS ARE UP, THEN YOU'RE 3664 02:36:49,770 --> 02:36:51,906 FORCED TO MAKE RECONTACT ALL 3665 02:36:51,906 --> 02:36:53,607 YOUR PARTICIPANTS AND SAY, HEY, 3666 02:36:53,607 --> 02:36:55,209 CAN I KEEP THIS DATA LONGER OR 3667 02:36:55,209 --> 02:36:56,744 HAVE TO DESTROY THE DATA BECAUSE 3668 02:36:56,744 --> 02:36:59,180 THAT'S WHAT YOU PUT INTO THE 3669 02:36:59,180 --> 02:37:00,181 ORIGINAL CONSENT. 3670 02:37:00,181 --> 02:37:02,450 WE HAD A COLLABORATOR THAT HAD 3671 02:37:02,450 --> 02:37:04,352 THAT CLAUS IN THEIR CONSENT FORM 3672 02:37:04,352 --> 02:37:09,223 AND IT WAS AN URGENT RECONTACT 3673 02:37:09,223 --> 02:37:12,126 PARTICIPANT TO USE THIS DATA IN 3674 02:37:12,126 --> 02:37:12,393 RESEARCH. 3675 02:37:12,393 --> 02:37:14,028 BROAD SHARING WITH RESEARCHERS 3676 02:37:14,028 --> 02:37:16,564 AND DATABASES. 3677 02:37:16,564 --> 02:37:18,532 DON'T LIMIT TO ANY CERTAIN 3678 02:37:18,532 --> 02:37:19,000 DATABASE OR A CERTAIN 3679 02:37:19,000 --> 02:37:26,907 RESEARCHER. 3680 02:37:26,907 --> 02:37:28,476 ALWAYS HAVE THEM KNOW YOU'LL 3681 02:37:28,476 --> 02:37:31,012 ALWAYS DO FUTURE RECONTACT. 3682 02:37:31,012 --> 02:37:37,585 A LITTLE BIT ABOUT DECODE VERSUS 3683 02:37:37,585 --> 02:37:37,918 DEIDENTIFIED. 3684 02:37:37,918 --> 02:37:39,553 WE'RE CAN CODE THE DATA SO 3685 02:37:39,553 --> 02:37:43,657 COLLABORATORS STILL HAVE A LINK 3686 02:37:43,657 --> 02:37:44,859 AND WE COULD GO BACK AND 3687 02:37:44,859 --> 02:37:46,360 SOMETIMES IT'S A GOOD THING AND 3688 02:37:46,360 --> 02:37:48,396 YOU MAY WANT TO CONSIDER HOW TO 3689 02:37:48,396 --> 02:37:50,831 APPROACH THAT WITH YOUR DATA. 3690 02:37:50,831 --> 02:37:52,500 SOMETHING MIGHT SHOW UP LATER IN 3691 02:37:52,500 --> 02:37:57,238 THE WHOLE GENOME SEQUENCING OR 3692 02:37:57,238 --> 02:37:59,373 SOMETHING ELSE AND YOU'RE LIKE 3693 02:37:59,373 --> 02:38:04,345 DO THESE KIDDOS THAT HAVE 3694 02:38:04,345 --> 02:38:05,579 CONGENITAL HEART DISEASE HAVE 3695 02:38:05,579 --> 02:38:07,448 MORE GI FEATURES? 3696 02:38:07,448 --> 02:38:09,183 LET ME SEE IF THEY DID. 3697 02:38:09,183 --> 02:38:11,419 IF YOU DON'T KEEP THE LINK THEN 3698 02:38:11,419 --> 02:38:14,688 IT PRESENTS A PROBLEM TO GO BACK 3699 02:38:14,688 --> 02:38:15,122 LATER. 3700 02:38:15,122 --> 02:38:20,227 THAT DOESN'T MEAN THAT YOUR IN 3701 02:38:20,227 --> 02:38:26,467 ANY TYPE OF WAY REDUCING THE 3702 02:38:26,467 --> 02:38:27,735 PRIVATE PROTECTIONS IT'S JUST 3703 02:38:27,735 --> 02:38:29,170 HOW YOU PRESENT THAT DURING YOUR 3704 02:38:29,170 --> 02:38:30,404 CONTENT PROCESS AND TALKING HOW 3705 02:38:30,404 --> 02:38:40,781 YOU'LL SHARE THE DATA. 3706 02:38:41,315 --> 02:38:43,651 A FEW THINGS TO STAY AWAY FROM 3707 02:38:43,651 --> 02:38:45,386 IS CHECK BOXES. 3708 02:38:45,386 --> 02:38:47,721 YOU CAN RECONTACT ME, I'LL CHECK 3709 02:38:47,721 --> 02:38:48,689 THAT BOX. 3710 02:38:48,689 --> 02:38:51,425 WE HAD A COLLABORATOR THAT THEY 3711 02:38:51,425 --> 02:38:52,827 HAD EIGHT CHECK BOXES. 3712 02:38:52,827 --> 02:38:57,364 TRYING TO KEEP UP WITH THAT IS A 3713 02:38:57,364 --> 02:38:57,631 NIGHTMARE. 3714 02:38:57,631 --> 02:38:59,934 WE ALSO HAD PAPER FORMS. 3715 02:38:59,934 --> 02:39:02,069 SO WHEN IT CAME TIME TO TALK 3716 02:39:02,069 --> 02:39:03,904 ABOUT SHARING DATA WITH THE 3717 02:39:03,904 --> 02:39:05,506 DATABASE THEY GO BACK AND PULL 3718 02:39:05,506 --> 02:39:08,175 ALL THE PAPER FORMS AND LOOK AT 3719 02:39:08,175 --> 02:39:10,344 ALL OF THOSE CHECK BOXES TO SEE 3720 02:39:10,344 --> 02:39:13,848 WHETHER THEY CAN SHARE SAMPLES, 3721 02:39:13,848 --> 02:39:15,716 COULD THEY DATA WITH TIS THIS 3722 02:39:15,716 --> 02:39:16,584 PERSON OR THAT PERSON. 3723 02:39:16,584 --> 02:39:18,719 THINK OF HAVING A NICE BLANKET 3724 02:39:18,719 --> 02:39:19,820 STATEMENT YOU'RE GOING SHARE 3725 02:39:19,820 --> 02:39:21,956 DATA, MOST OF OUR FAMILIES ARE 3726 02:39:21,956 --> 02:39:23,457 VERY WILLING TO SHARE THEIR 3727 02:39:23,457 --> 02:39:23,791 DATA. 3728 02:39:23,791 --> 02:39:25,559 THEY'RE IN THIS FOR THE BETTER 3729 02:39:25,559 --> 02:39:26,193 GOOD OF SOCIETY AND OTHER 3730 02:39:26,193 --> 02:39:36,537 FAMILIES. 3731 02:39:36,537 --> 02:39:39,306 IF YOU'RE IRB PUSHES BACK, 3732 02:39:39,306 --> 02:39:42,743 PUSHBACK AGAINST THEM AND SAY 3733 02:39:42,743 --> 02:39:44,311 WHY DO I NEED THESE LIMITATIONS. 3734 02:39:44,311 --> 02:39:46,147 I DON'T NEED TO. 3735 02:39:46,147 --> 02:39:47,148 NO NAME DATABASES. 3736 02:39:47,148 --> 02:39:49,283 YOU MAY BE WORKING WELL WITH 3737 02:39:49,283 --> 02:39:50,417 DR. SMITH AND KNOW YOU'LL SHARE 3738 02:39:50,417 --> 02:39:53,087 DATA AND GREAT TO PUT IN THERE 3739 02:39:53,087 --> 02:39:54,822 BUT DON'T LIMIT TO DR. SMITH. 3740 02:39:54,822 --> 02:39:57,091 SAY WE MAY BE COLLABORATING WITH 3741 02:39:57,091 --> 02:39:58,659 OTHER RESEARCHERS IN THE FUTURE 3742 02:39:58,659 --> 02:39:59,793 AND YOU DON'T KNOW WHO THEY ARE 3743 02:39:59,793 --> 02:40:02,263 NOW AN DON'T WANT TO GO THROUGH 3744 02:40:02,263 --> 02:40:12,540 THAT RECONTACT. 3745 02:40:14,341 --> 02:40:20,047 WE THANKFULLY DID PUT OTHER 3746 02:40:20,047 --> 02:40:23,484 REGULATED AND OTHER DATABASES 3747 02:40:23,484 --> 02:40:24,385 AND WERE A LITTLE BIT COVERED 3748 02:40:24,385 --> 02:40:25,853 BUT DON'T LIMIT YOURSELF. 3749 02:40:25,853 --> 02:40:27,288 YOU COULD NAME EXAMPLES BUT 3750 02:40:27,288 --> 02:40:35,329 DON'T MAKE THOSE THE ONLY ONES. 3751 02:40:35,329 --> 02:40:37,198 WE KNOW WITH OUR POPULATIONS 3752 02:40:37,198 --> 02:40:38,599 SOMETIMES THEY WANT IT LIMITED 3753 02:40:38,599 --> 02:40:40,367 TO THE STUDY OF DOWN SYNDROME 3754 02:40:40,367 --> 02:40:42,169 AND THAT'S OKAY BUT DOESN'T MEAN 3755 02:40:42,169 --> 02:40:43,304 YOU HAVE TO LIMIT TO DOWN 3756 02:40:43,304 --> 02:40:45,005 SYNDROME AND IN A REPLACEMENTS. 3757 02:40:45,005 --> 02:40:47,474 YOU CAN LIMIT TO DOWN SYNDROME 3758 02:40:47,474 --> 02:40:52,613 AND MEDICAL PROBLEMS ASSOCIATED 3759 02:40:52,613 --> 02:40:55,549 WITH IT OR MAYBE TRYING TO 3760 02:40:55,549 --> 02:40:57,418 UNDERSTAND WHY IT OCCURS AND 3761 02:40:57,418 --> 02:41:03,791 MAKE IT BROAD BUT SPECIFIC. 3762 02:41:03,791 --> 02:41:05,526 IT'S GREAT TO PUT IN THERE YOU 3763 02:41:05,526 --> 02:41:09,797 MAY BE RECONTACTED FOR A FUTURE 3764 02:41:09,797 --> 02:41:11,465 STUDY TO BE REACHED OUT BY 3765 02:41:11,465 --> 02:41:12,866 DR. ROSSER BUT IF THEY GET HIT 3766 02:41:12,866 --> 02:41:15,603 BY A BUS YOU HAVE TO EXPLAIN WHY 3767 02:41:15,603 --> 02:41:18,572 DR. ROSSER CAN NO LONGER BE THE 3768 02:41:18,572 --> 02:41:19,440 PERSON REACHING OUT. 3769 02:41:19,440 --> 02:41:21,141 TRY TO THINK THROUGH THE 3770 02:41:21,141 --> 02:41:23,477 SCENARIOS OF MAKING IT VERY 3771 02:41:23,477 --> 02:41:24,545 BROAD. 3772 02:41:24,545 --> 02:41:26,413 AND I'LL SAY WE'VE BEEN DOING 3773 02:41:26,413 --> 02:41:29,216 THIS FOR OVER 20 YEARS. 3774 02:41:29,216 --> 02:41:31,185 WHEN WE STARTED OUR CONSENT 3775 02:41:31,185 --> 02:41:32,953 FORMS WERE A PAGE MAYBE TWO. 3776 02:41:32,953 --> 02:41:35,089 WHOLE GENOME SEQUENCING WAS NOT 3777 02:41:35,089 --> 02:41:36,924 CONSIDERED AT THAT POINT. 3778 02:41:36,924 --> 02:41:39,026 THERE WAS NO LANGUAGE IN THAT. 3779 02:41:39,026 --> 02:41:41,195 WHEN WE GOT READY TO START 3780 02:41:41,195 --> 02:41:48,602 SHARING OUR DATA, WE HAD TO HAVE 3781 02:41:48,602 --> 02:41:54,408 CURRENT CONVERSATIONS AND WHAT 3782 02:41:54,408 --> 02:41:56,543 IS THE CONSENT. 3783 02:41:56,543 --> 02:42:00,347 DID THEY MEAN TO SHARE THE DATA 3784 02:42:00,347 --> 02:42:02,883 WHEN WHOLE GENOME SEQUENCING WAS 3785 02:42:02,883 --> 02:42:03,517 NOT DISCUSSED. 3786 02:42:03,517 --> 02:42:08,922 IT TOOK A YEAR TO GET ALL OF OUR 3787 02:42:08,922 --> 02:42:14,028 CONSENT FORMS APPROVED AND WE 3788 02:42:14,028 --> 02:42:16,030 HAD TO SUPPLY AND OURS ALONE WAS 3789 02:42:16,030 --> 02:42:19,433 LIKE SEVEN DIFFERENT STUDY. 3790 02:42:19,433 --> 02:42:20,367 THEY WANTED TO SEE EVERY VERSION 3791 02:42:20,367 --> 02:42:24,972 OF THE CONSENT FORM. 3792 02:42:24,972 --> 02:42:26,407 AND THINKING THROUGH WHAT YOU'RE 3793 02:42:26,407 --> 02:42:28,242 PUTTING INTO YOUR CONSENT FORMS 3794 02:42:28,242 --> 02:42:28,842 CAN HELP YOU OUT IN THE LONG 3795 02:42:28,842 --> 02:42:31,512 RUN. 3796 02:42:31,512 --> 02:42:33,414 AND THE NIH HAS SOME EXCELLENT 3797 02:42:33,414 --> 02:42:39,119 LANGUAGE ON THEIR WEBSITE TO 3798 02:42:39,119 --> 02:42:41,455 HELP YOU WITH THE SHARING AND 3799 02:42:41,455 --> 02:42:43,891 THEY HAVE LANGUAGE THEY WANT YOU 3800 02:42:43,891 --> 02:42:46,727 TO PUT IN THERE. 3801 02:42:46,727 --> 02:42:49,330 OFTEN YOU CAN PUSH BACK A LITTLE 3802 02:42:49,330 --> 02:42:51,565 BIT AND ASK WHY THERE'S CERTAIN 3803 02:42:51,565 --> 02:42:53,500 LANGUAGE IN THE CONSENT FORM 3804 02:42:53,500 --> 02:42:55,269 THAT MAY NOT CONFORM TO WHAT 3805 02:42:55,269 --> 02:42:55,969 THEY WANT YOU TO HAVE. 3806 02:42:55,969 --> 02:42:58,105 IF YOU'RE THINKING OF REVISING 3807 02:42:58,105 --> 02:43:05,379 OR REVAMPING TO DO THIS AND THEY 3808 02:43:05,379 --> 02:43:08,916 SAID WE DO WANT YOU TO RECONSENT 3809 02:43:08,916 --> 02:43:11,752 BEFORE WE LET YOU SHARE THE 3810 02:43:11,752 --> 02:43:12,786 DATA. 3811 02:43:12,786 --> 02:43:15,055 WE SPENT ABOUT EIGHT MONTHS 3812 02:43:15,055 --> 02:43:17,024 RECONTACTING FAMILIES AND THEN 3813 02:43:17,024 --> 02:43:19,460 HAD TO SHOW OUR RATE OF 3814 02:43:19,460 --> 02:43:19,727 RECONTACT. 3815 02:43:19,727 --> 02:43:20,994 HOW MANY WE WERE ABLE TO FIND 3816 02:43:20,994 --> 02:43:22,730 AND HOW MANY CONSENTED, 3817 02:43:22,730 --> 02:43:22,996 ETCETERA. 3818 02:43:22,996 --> 02:43:25,299 IT'S DIFFICULT TO FIND FAMILIES 3819 02:43:25,299 --> 02:43:28,369 ESPECIALLY IF YOU HAVEN'T HAD 3820 02:43:28,369 --> 02:43:31,538 CONTACT WITH THEM IN SEVERAL 3821 02:43:31,538 --> 02:43:34,241 YEARS BUT OUR RATES OF YES, I'M 3822 02:43:34,241 --> 02:43:36,343 SIGNING THIS AND YET I WANT IT 3823 02:43:36,343 --> 02:43:39,113 SHARE MY DATA ARE SO HIGH EVEN 3824 02:43:39,113 --> 02:43:44,351 OUR RECONTACT RATE WAS LOW THEY 3825 02:43:44,351 --> 02:43:45,652 DID ACCEPT THE FACT MOST WOULD 3826 02:43:45,652 --> 02:43:47,488 BE IN AGREEMENT AND GAVE US 3827 02:43:47,488 --> 02:43:49,156 WAIVERS TO BE ABLE TO SHARE THE 3828 02:43:49,156 --> 02:43:49,423 DATA. 3829 02:43:49,423 --> 02:43:55,162 AS I MENTIONED, BEING BROAD AND 3830 02:43:55,162 --> 02:43:56,697 SPECIFIC DOES NOT MEAN YOU'RE 3831 02:43:56,697 --> 02:43:58,565 PREVENTING DATA ACCESS CONTROL. 3832 02:43:58,565 --> 02:43:59,600 YOU CAN STILL HAVE THE LIMIT 3833 02:43:59,600 --> 02:44:02,469 ACCESS AND ENSURE THE DATA'S 3834 02:44:02,469 --> 02:44:05,406 ONLY AVAILABLE TO INDIVIDUALS 3835 02:44:05,406 --> 02:44:06,974 AND RESEARCHERS THAT ACCESS 3836 02:44:06,974 --> 02:44:08,375 THESE DATABASES HAVE TO AGREE 3837 02:44:08,375 --> 02:44:11,945 NOT TO TRY TO IDENTIFY YOU, 3838 02:44:11,945 --> 02:44:12,246 RIGHT. 3839 02:44:12,246 --> 02:44:14,648 CHALLENGES IN COLLABORATION, AS 3840 02:44:14,648 --> 02:44:15,716 I MENTIONED INSTITUTIONAL 3841 02:44:15,716 --> 02:44:18,652 PROCESS THE DATA USE AGREEMENTS, 3842 02:44:18,652 --> 02:44:21,722 MTAs AND IRB, IT'S A LONG 3843 02:44:21,722 --> 02:44:23,323 PROCESS TO GET IN PLACE. 3844 02:44:23,323 --> 02:44:26,727 SHARING YOUR DATA WITH THE 3845 02:44:26,727 --> 02:44:28,529 INCLUDE BIO REPOSITORY AND DATA 3846 02:44:28,529 --> 02:44:30,564 REPOSITORY HELPS WITH THAT SO 3847 02:44:30,564 --> 02:44:32,132 YOU DON'T HAVE TO HAVE THE 3848 02:44:32,132 --> 02:44:32,766 INDIVIDUAL DATA USE AGREEMENTS 3849 02:44:32,766 --> 02:44:34,568 IN PLACE. 3850 02:44:34,568 --> 02:44:36,003 AND RIGHT NOW THERE'S REALLY 3851 02:44:36,003 --> 02:44:38,238 LIMITED FUNDING FOR THE DATA 3852 02:44:38,238 --> 02:44:38,806 SHARING. 3853 02:44:38,806 --> 02:44:40,374 YOU'RE STRONG PUT A LOT OF TIME 3854 02:44:40,374 --> 02:44:41,375 AND EFFORT INTO DOING THIS 3855 02:44:41,375 --> 02:44:42,042 WITHOUT FUNDING TO BE ABLE TO DO 3856 02:44:42,042 --> 02:44:44,812 IT. 3857 02:44:44,812 --> 02:44:46,213 IT'S ALREADY BEEN MENTIONED 3858 02:44:46,213 --> 02:44:48,916 ABOUT THE DUPLICATION OF STUDY 3859 02:44:48,916 --> 02:44:49,383 PARTICIPANTS. 3860 02:44:49,383 --> 02:44:51,618 THAT IS CERTAINLY A CHALLENGE IN 3861 02:44:51,618 --> 02:44:53,086 COLLABORATION AGAIN IF YOU'RE 3862 02:44:53,086 --> 02:44:54,455 ONLY SHARING DEIDENTIFIED DATA 3863 02:44:54,455 --> 02:44:55,889 BUT DON'T WANT DUPLICATES. 3864 02:44:55,889 --> 02:44:57,624 OUR FAMILIES ARE GREAT ABOUT 3865 02:44:57,624 --> 02:44:59,193 PARTICIPATING IN STUDIES AND DO 3866 02:44:59,193 --> 02:45:00,727 IT ALL OVER THE UNITED STATES. 3867 02:45:00,727 --> 02:45:04,364 THEY'RE OFTEN IN MULTIPLE 3868 02:45:04,364 --> 02:45:10,537 STATES. 3869 02:45:10,537 --> 02:45:11,839 I'M ALMOST OUT OF TIME AND TALK 3870 02:45:11,839 --> 02:45:13,540 ABOUT CHALLENGES AND 3871 02:45:13,540 --> 02:45:13,941 PUBLICATION. 3872 02:45:13,941 --> 02:45:16,376 SOMETHING I RAN INTO WITH TRYING 3873 02:45:16,376 --> 02:45:19,646 TO COLLABORATE BECAUSE WE HAVE A 3874 02:45:19,646 --> 02:45:21,648 HUGE DATABASE AND ONE OF THE 3875 02:45:21,648 --> 02:45:23,784 LARGER CONTRIBUTORS TO INCLUDE 3876 02:45:23,784 --> 02:45:26,887 DCC AND HAVE MATERNAL INTERVIEWS 3877 02:45:26,887 --> 02:45:28,155 AND MEDICAL RECORDS AND GET 3878 02:45:28,155 --> 02:45:29,523 REQUESTS TO BE ABLE TO SHARE THE 3879 02:45:29,523 --> 02:45:34,161 DATA. 3880 02:45:34,161 --> 02:45:39,967 IF WE DO THE SAME DE-IDENTIFIED 3881 02:45:39,967 --> 02:45:41,401 BUT CAN'T ASK ME QUESTIONS THEN 3882 02:45:41,401 --> 02:45:42,836 I'M NOT ENGAGED IN RESEARCH. 3883 02:45:42,836 --> 02:45:48,208 IF I KEEP THAT CODE IN PLACE OR 3884 02:45:48,208 --> 02:45:50,210 I WANT TO BE INCLUDED ON A 3885 02:45:50,210 --> 02:45:53,213 PUBLICATION, I AM ENGAGED IN 3886 02:45:53,213 --> 02:45:53,480 RESEARCH. 3887 02:45:53,480 --> 02:45:55,182 AND THEREFORE THAT MEANS I HAVE 3888 02:45:55,182 --> 02:45:57,317 TO HAVE AN IRB PROTOCOL IN 3889 02:45:57,317 --> 02:45:59,052 PLACE, I HAVE TO HAVE A RELIANCE 3890 02:45:59,052 --> 02:46:01,588 AGREEMENT IN PLACE. 3891 02:46:01,588 --> 02:46:03,323 NOW, WHAT COMES AS A RESEARCHER 3892 02:46:03,323 --> 02:46:05,292 WHO REACHED OUT TO ME BECAUSE 3893 02:46:05,292 --> 02:46:07,728 THEY DID A MEASURE AND THE 3894 02:46:07,728 --> 02:46:10,397 REVIEWER OF THE JOURNAL ARTICLE 3895 02:46:10,397 --> 02:46:12,466 SAID THIS IS GREAT BUT CAN YOU 3896 02:46:12,466 --> 02:46:15,936 GIVE ME 50 MORE KIDDOS WHO DID 3897 02:46:15,936 --> 02:46:17,538 THE SAME MEASURE, I SAID YES, 3898 02:46:17,538 --> 02:46:19,206 I'M HAPPY TO SHARE. 3899 02:46:19,206 --> 02:46:20,908 NO, IT WILL BE SIX MONTHS BEFORE 3900 02:46:20,908 --> 02:46:22,776 I CAN GET THROUGH THE IRB 3901 02:46:22,776 --> 02:46:24,378 PROCESS TO BE ABLE TO SHARE THE 3902 02:46:24,378 --> 02:46:25,445 DATA OR GIVE UP MY PUBLICATION 3903 02:46:25,445 --> 02:46:31,885 RIGHTS. 3904 02:46:31,885 --> 02:46:35,422 AND IT'S TIME CONSUMING AND 3905 02:46:35,422 --> 02:46:35,923 PREVENT COLLABORATIONS. 3906 02:46:35,923 --> 02:46:40,861 I DO HOPE AS WE CONTINUE TO 3907 02:46:40,861 --> 02:46:42,563 CONTRIBUTE DATA TO THE INCLUDE 3908 02:46:42,563 --> 02:46:44,865 DCC OUR THOUGHTS OF HOW WE DO 3909 02:46:44,865 --> 02:46:47,367 MAKE SURE THE CONTRIBUTORS DO 3910 02:46:47,367 --> 02:46:48,201 GET CREDIT FOR THAT. 3911 02:46:48,201 --> 02:46:51,071 THAT WAS IT. 3912 02:46:51,071 --> 02:46:53,340 PLAN FOR THE FUTURE, RAW CONSENT 3913 02:46:53,340 --> 02:46:55,075 IS KEY AND NEED ADDITIONAL 3914 02:46:55,075 --> 02:46:56,343 FUNDING FOR DATA SHARING AND 3915 02:46:56,343 --> 02:46:58,745 HAPPY TO DO IT AND IT'S TIME 3916 02:46:58,745 --> 02:47:01,315 CONSUMING TO GO THROUGH THE 3917 02:47:01,315 --> 02:47:02,416 MEDICAL RECORDS IN AND BRING 3918 02:47:02,416 --> 02:47:04,284 THAT IN AND BE ABLE TO SHARE IT 3919 02:47:04,284 --> 02:47:07,421 AND I THINK IT'S IMPORTANT TO 3920 02:47:07,421 --> 02:47:08,021 HAVE THOSE COMMUNICATIONS 3921 02:47:08,021 --> 02:47:09,423 BETWEEN THE CONTRIBUTORS AND THE 3922 02:47:09,423 --> 02:47:15,395 DATA USERS. 3923 02:47:15,395 --> 02:47:19,800 AND I THINK JINLEE WILL TALK 3924 02:47:19,800 --> 02:47:21,234 ABOUT THE DATA USER SIDE. 3925 02:47:21,234 --> 02:47:23,537 THAT'S IT FOR ME. 3926 02:47:23,537 --> 02:47:29,309 THANK YOU SO MUCH. 3927 02:47:29,309 --> 02:47:32,412 >> NOW WE HAVE DATA DEPOS ED TO 3928 02:47:32,412 --> 02:47:34,448 THE DATA HUB. 3929 02:47:34,448 --> 02:47:38,986 WE HAVE DATA USER. 3930 02:47:38,986 --> 02:47:40,854 OUR NEXT SPEAKER IS DR. JINLING 3931 02:47:40,854 --> 02:47:41,588 LU FROM THE UNIVERSITY OF 3932 02:47:41,588 --> 02:47:48,528 FLORIDA AND THE TITLE IS SHARING 3933 02:47:48,528 --> 02:47:51,665 DATA FOR SECONDARY ANALYSIS. 3934 02:47:51,665 --> 02:47:54,067 SHE'S A USER FOR THE DATA HUB 3935 02:47:54,067 --> 02:48:00,207 BECAUSE MOST OF THE USERS ARE 3936 02:48:00,207 --> 02:48:04,344 PRIMARY DATA CONTRIBUTORS. 3937 02:48:04,344 --> 02:48:06,279 LET'S HEAR HER CASE FOR USING 3938 02:48:06,279 --> 02:48:06,713 DATA ANALYSIS. 3939 02:48:06,713 --> 02:48:10,150 >> THANK YOU. 3940 02:48:10,150 --> 02:48:11,852 WITH ALL THE EFFORTS FROM NIH 3941 02:48:11,852 --> 02:48:15,389 AND DATA SHARING POLICY AND 3942 02:48:15,389 --> 02:48:19,793 CONTRIBUTORS, I'M EXCITED TO 3943 02:48:19,793 --> 02:48:23,530 SHARE THE DATA AND WE'RE HERE TO 3944 02:48:23,530 --> 02:48:23,997 BENEFIT FROM ALL THIS. 3945 02:48:23,997 --> 02:48:27,200 STILL, I WANT TO SHARE WITH YOU 3946 02:48:27,200 --> 02:48:28,368 GUYS SOME USE CASES AND 3947 02:48:28,368 --> 02:48:36,309 CHALLENGES WE ALSO FACE. 3948 02:48:36,309 --> 02:48:39,146 HOPEFULLY THIS WILL BENEFIT THE 3949 02:48:39,146 --> 02:48:39,780 SECONDARY USERS FROM A BROADER 3950 02:48:39,780 --> 02:48:46,687 SCIENTIFIC COMMUNITY. 3951 02:48:46,687 --> 02:48:53,894 ACCESSING SHARED DATA FOR 3952 02:48:53,894 --> 02:48:54,661 SECONDARY ANALYSIS. 3953 02:48:54,661 --> 02:49:03,170 SO THE FOCUS ON MY LAB IS 3954 02:49:03,170 --> 02:49:03,904 DEVELOPING A.I. AND MACHINE 3955 02:49:03,904 --> 02:49:06,206 LEARNING APPROACHES TO COME UP 3956 02:49:06,206 --> 02:49:07,908 WITH PERSONALIZED TREATMENT AND 3957 02:49:07,908 --> 02:49:09,309 IDENTIFY BIOMARKERS. 3958 02:49:09,309 --> 02:49:12,746 THAT'S THE GENERAL GOAL. 3959 02:49:12,746 --> 02:49:20,387 FOR US THE DATA IS A SOURCE AND 3960 02:49:20,387 --> 02:49:23,290 WHERE WE ANALYZE. 3961 02:49:23,290 --> 02:49:25,292 WE ARE VERY SAD TO SAY THE DATA 3962 02:49:25,292 --> 02:49:31,364 BEING SHARED MORE AND MORE AND 3963 02:49:31,364 --> 02:49:32,365 MANY BIG CONSORTIUM DATA IN THE 3964 02:49:32,365 --> 02:49:42,542 PLATFORM. 3965 02:49:45,512 --> 02:49:46,580 THERE'S KIDS FIRST AND INCLUDE 3966 02:49:46,580 --> 02:49:47,314 PROGRAM. 3967 02:49:47,314 --> 02:49:52,986 WE STARTED ANALYZING THE KIDS 3968 02:49:52,986 --> 02:49:54,054 FIRST COHORT WHICH IS CO-HOSTED 3969 02:49:54,054 --> 02:50:04,464 BY THE INCLUDE PROGRAM. 3970 02:50:29,156 --> 02:50:32,259 WE KNOW THAT COMPARED TO OTHER 3971 02:50:32,259 --> 02:50:35,028 U.K. BIO BANK DATA MILLIONS OF 3972 02:50:35,028 --> 02:50:38,365 INDIVIDUALS HAVE HYPERTENSION 3973 02:50:38,365 --> 02:50:41,301 FOR KIDS FIRST COHORT IT'S A 3974 02:50:41,301 --> 02:50:43,904 SMALL, MEDIUM SIZED COHORT. 3975 02:50:43,904 --> 02:50:49,276 WE PUT EFFORTS IN TRYING TO 3976 02:50:49,276 --> 02:50:53,713 DEVELOP SOME METHODS INFERENCE 3977 02:50:53,713 --> 02:50:53,980 METHOD. 3978 02:50:53,980 --> 02:51:01,788 THAT SHOWED A GOOD ADVANTAGE IN 3979 02:51:01,788 --> 02:51:05,125 FINDING SOME BARRIERS WITH THE 3980 02:51:05,125 --> 02:51:13,466 GWAS IN THE SMALL COHORT SIZE. 3981 02:51:13,466 --> 02:51:15,602 IT'S TRYING TO EVALUATE THE 3982 02:51:15,602 --> 02:51:19,139 VARIANT IN THE OVER ALL 3983 02:51:19,139 --> 02:51:20,006 POPULATION. 3984 02:51:20,006 --> 02:51:23,143 IT'S LIKELY TO ADD VARIANCE 3985 02:51:23,143 --> 02:51:24,311 UNLESS YOU INCREASE THE SIZE TO 3986 02:51:24,311 --> 02:51:27,280 A MILLION SAMPLES. 3987 02:51:27,280 --> 02:51:31,384 SO FOR IBI IT'S FOCUSSING 3988 02:51:31,384 --> 02:51:36,523 DIFFERENT FROM GWAS FOCUSES ON 3989 02:51:36,523 --> 02:51:39,192 THE PATIENT AND HAVE THIS 3990 02:51:39,192 --> 02:51:40,060 VARIANCE. 3991 02:51:40,060 --> 02:51:44,364 WE CONSIDER THE INDIVIDUAL 3992 02:51:44,364 --> 02:51:47,467 GENETIC MAKE UP AND WE HAVE THIS 3993 02:51:47,467 --> 02:51:51,838 APPROACH TOGETHER WITH THE GWAS 3994 02:51:51,838 --> 02:51:54,441 TO FIND IT WAS ABLE TO 3995 02:51:54,441 --> 02:51:56,843 COMPLEMENT THE GWAS END 3996 02:51:56,843 --> 02:52:00,680 IDENTIFYING THE RARE VARIANTS. 3997 02:52:00,680 --> 02:52:07,220 WE DID PRELIMINARY ANALYSIS OF 3998 02:52:07,220 --> 02:52:17,163 GENOMIC VARIANTS. 3999 02:52:17,163 --> 02:52:21,167 THIS SHOWS SOME WELL KNOWN 4000 02:52:21,167 --> 02:52:28,308 VARIANTS AND THAT WORRIED -- 4001 02:52:28,308 --> 02:52:30,677 WERE IDENTIFIED ACROSS THE 4002 02:52:30,677 --> 02:52:30,977 VARIANTS. 4003 02:52:30,977 --> 02:52:32,812 FOR GWAS IT'S MUCH LOWER. 4004 02:52:32,812 --> 02:52:35,515 IF YOU USE GWAS TO ANALYZE THIS 4005 02:52:35,515 --> 02:52:36,950 YOU MAY MISS ALL THE VARIANTS. 4006 02:52:36,950 --> 02:52:40,353 THEY'RE WELL KNOWN BUT WE DID 4007 02:52:40,353 --> 02:52:41,621 IDENTIFIED OTHER VARIANTS NOT 4008 02:52:41,621 --> 02:52:47,327 REPORTED BEFORE. 4009 02:52:47,327 --> 02:52:51,298 I WANTED TO SEE A USE CASE. 4010 02:52:51,298 --> 02:52:57,570 THE SHARED DATA HAS A LOT OF 4011 02:52:57,570 --> 02:52:59,639 BENEFITS FOR SCIENTIFIC 4012 02:52:59,639 --> 02:53:03,643 COMMUNITY FOR EXAMPLE THOSE WHO 4013 02:53:03,643 --> 02:53:06,513 DEVELOP NOVEL TOOLS FOR 4014 02:53:06,513 --> 02:53:07,681 DISCOVERY. 4015 02:53:07,681 --> 02:53:08,982 IT'S DEFINITELY A TEST FOR NEW 4016 02:53:08,982 --> 02:53:12,385 TOOLS AND ALSO WE CAN HAVE A 4017 02:53:12,385 --> 02:53:15,922 NORMAL FINDINGS FROM THE SAME 4018 02:53:15,922 --> 02:53:18,925 DATA TESTING NEW HYPOTHESIS OF 4019 02:53:18,925 --> 02:53:25,865 COURSE IT'S GOING TO DEVELOP 4020 02:53:25,865 --> 02:53:27,600 SUPPORT FROM THE DATA COMMUNITY 4021 02:53:27,600 --> 02:53:28,368 CENTER FOR KIDS FIRST OR 4022 02:53:28,368 --> 02:53:34,975 INCLUDE. 4023 02:53:34,975 --> 02:53:36,142 PROMOTE COLLABORATION AMONG THE 4024 02:53:36,142 --> 02:53:40,213 CONTRIBUTOR AND DCC. 4025 02:53:40,213 --> 02:53:43,249 AT THE SAME TIME WITH THE 4026 02:53:43,249 --> 02:53:47,487 SOLUTIONS WE'RE AT THE EARLY 4027 02:53:47,487 --> 02:53:52,859 STAGE OF UTILIZING THE DATA. 4028 02:53:52,859 --> 02:54:03,336 SO WE KNOW THIS IS THE MOST 4029 02:54:11,878 --> 02:54:14,781 MESSY DATA TYPE AND INCLUDE OR 4030 02:54:14,781 --> 02:54:16,383 KIDS FIRST HAVE HARMONIZED 4031 02:54:16,383 --> 02:54:21,488 MEDICAL DATA USING FOR 4032 02:54:21,488 --> 02:54:22,922 RESEARCHERS AND CONTRIBUTING 4033 02:54:22,922 --> 02:54:24,924 DATA WHO MAY NOT KNOW A LOT 4034 02:54:24,924 --> 02:54:27,794 ABOUT DOWN SYNDROME. 4035 02:54:27,794 --> 02:54:28,628 THEY WANT TO HELP WITH THE 4036 02:54:28,628 --> 02:54:38,338 TOOLS. 4037 02:54:38,338 --> 02:54:40,540 AND THIS PARTICIPANT HAS IT OR 4038 02:54:40,540 --> 02:54:40,707 NOT. 4039 02:54:40,707 --> 02:54:44,377 IT'S LIKE CONVENIENT FOR US TO 4040 02:54:44,377 --> 02:54:50,950 USE THE DATA. 4041 02:54:50,950 --> 02:54:57,023 AT THE SAME TIME WE REALIZED DUE 4042 02:54:57,023 --> 02:54:59,626 TO THE CHALLENGES EARLY STAGES 4043 02:54:59,626 --> 02:55:01,728 THERE'S POTENTIAL DISCONNECTIONS 4044 02:55:01,728 --> 02:55:07,434 AMONG THE DATA CONTRIBUTORS. 4045 02:55:07,434 --> 02:55:12,172 FOR EXAMPLE, LIKE FOR EXAMPLE IF 4046 02:55:12,172 --> 02:55:15,141 WE WE LOOK AT THE PARTICIPANTS, 4047 02:55:15,141 --> 02:55:21,114 I WANT TO FIGURE OUT WHICH ONES 4048 02:55:21,114 --> 02:55:23,216 HAS IT AND WHICH DOESN'T FOR THE 4049 02:55:23,216 --> 02:55:23,550 REQUIREMENTS. 4050 02:55:23,550 --> 02:55:32,592 SOMETIMES IT'S NOT THAT OBVIOUS. 4051 02:55:32,592 --> 02:55:38,832 IT'S IMPORTANT TO INVOLVE THE 4052 02:55:38,832 --> 02:55:43,670 SECONDARY USER TO MAKE SURE THE 4053 02:55:43,670 --> 02:55:45,972 DATA IS USABLE AND YOU CAN 4054 02:55:45,972 --> 02:55:47,240 COMBINE DATA FROM DIFFERENT 4055 02:55:47,240 --> 02:55:47,674 PLATFORMS. 4056 02:55:47,674 --> 02:55:50,977 YOU WANT TO DEVELOP STANDARD 4057 02:55:50,977 --> 02:55:52,479 PROTOCOL FOR THE DATA. 4058 02:55:52,479 --> 02:55:53,947 WE CAN COMBINE THEM TO INCREASE 4059 02:55:53,947 --> 02:56:02,322 SAMPLE SIZE AND OTHERS. 4060 02:56:06,326 --> 02:56:08,361 OKAY, GENOMIC DATA AND YOU GET 4061 02:56:08,361 --> 02:56:12,265 IT FROM THE DATA CONTRIBUTORS. 4062 02:56:12,265 --> 02:56:15,135 WE APPRECIATE TO HAVE ALL THESE 4063 02:56:15,135 --> 02:56:20,807 LIKE ALL THE DATA QUICKLY BUT WE 4064 02:56:20,807 --> 02:56:26,779 FACE CHALLENGES IN THE DATA FROM 4065 02:56:26,779 --> 02:56:31,818 FROM THE CLOUD PLATFORM FOR KIDS 4066 02:56:31,818 --> 02:56:34,587 FIRST AND INCLUDE. 4067 02:56:34,587 --> 02:56:36,856 ONE SAMPLE HAS A LARGE FILE BUT 4068 02:56:36,856 --> 02:56:40,260 GENERALLY WE WANT TO DO THE GWAS 4069 02:56:40,260 --> 02:56:41,694 APPLICATIONS YOU NEED A COHORT 4070 02:56:41,694 --> 02:56:44,397 TO ALLOW GENOMIC DATA. 4071 02:56:44,397 --> 02:56:46,266 HAVE A MATRIX. 4072 02:56:46,266 --> 02:56:49,068 THAT'S LIKE THE A.I. READY DATA 4073 02:56:49,068 --> 02:56:51,204 SET WHICH IS NOT THERE. 4074 02:56:51,204 --> 02:56:55,942 SO I'M KIND OF THINKING IT'S 4075 02:56:55,942 --> 02:56:59,512 IMPORTANT FOR IT TO BE THERE AND 4076 02:56:59,512 --> 02:57:02,048 MANY USERS OF THE PLATFORM ARE 4077 02:57:02,048 --> 02:57:12,759 NOT EXPERTS IN LIKE GENOME IC 4078 02:57:14,027 --> 02:57:20,433 DETAILED EXPERTISE AND IN 4079 02:57:20,433 --> 02:57:23,703 TALKING WITH THEM THEY'RE 4080 02:57:23,703 --> 02:57:25,939 PLANNING TO INCORPORATE THE 4081 02:57:25,939 --> 02:57:27,106 GENOMIC DATA AND IN THE PROCESS 4082 02:57:27,106 --> 02:57:35,014 OF PROVIDING EFFICIENT TOOLS. 4083 02:57:35,014 --> 02:57:37,917 YOU NEED GENOMIC AND OTHER DATA 4084 02:57:37,917 --> 02:57:41,421 TO BE ABLE TO ANALYZE THIS. 4085 02:57:41,421 --> 02:57:41,621 OKAY. 4086 02:57:41,621 --> 02:57:45,825 THE LAST POINT I WANT TO MAKE IS 4087 02:57:45,825 --> 02:57:52,365 YEAH, SO THINKING THEY'LL 4088 02:57:52,365 --> 02:57:54,100 PROJECTS ARE GREAT AND EVALUATE 4089 02:57:54,100 --> 02:57:56,369 WHETHER THE DATA SHARING POLICY 4090 02:57:56,369 --> 02:57:58,905 IS SUCCESSFUL OR NOT. 4091 02:57:58,905 --> 02:58:00,907 WE SHARED THE RELEVANT DATA 4092 02:58:00,907 --> 02:58:03,910 THERE AND THE ONLY USERS ARE THE 4093 02:58:03,910 --> 02:58:09,015 CONTRIBUTOR OR COLLABORATORS ARE 4094 02:58:09,015 --> 02:58:12,385 NOT MUCH USING AND SO I THINK 4095 02:58:12,385 --> 02:58:14,420 THAT'S THE GOAL OF DATA SHARING. 4096 02:58:14,420 --> 02:58:17,657 WITH ALL THE EFFORTS FROM 4097 02:58:17,657 --> 02:58:20,360 DIFFERENT PROJECTS WITH THIS 4098 02:58:20,360 --> 02:58:22,795 USER CENTRAL IN MIND BASICALLY 4099 02:58:22,795 --> 02:58:25,465 WOULD BE A GREAT FUTURE FOR THE 4100 02:58:25,465 --> 02:58:33,039 DATA SHARING AND UTILIZATION. 4101 02:58:33,039 --> 02:58:35,742 THIS IS THE ACKNOWLEDGEMENT. 4102 02:58:35,742 --> 02:58:42,849 THANK YOU. 4103 02:58:42,849 --> 02:58:44,851 >> THANKS THE SPEAKERS FOR GREAT 4104 02:58:44,851 --> 02:58:48,421 TALKS AND WE'LL OPEN IT UP FOR 4105 02:58:48,421 --> 02:58:49,822 QUESTIONS AND DISCUSSION. 4106 02:58:49,822 --> 02:58:53,726 WE'LL HAVE A 10-MINUTE COFFEE 4107 02:58:53,726 --> 02:58:56,362 BREAK AT 2:00 TO 2:10. 4108 02:58:56,362 --> 02:58:56,796 >> THANK YOU. 4109 02:58:56,796 --> 02:58:59,799 I WANT TO TOUCH ON A COUPLE 4110 02:58:59,799 --> 02:59:00,933 ISSUES THEY BROUGHT UP AND ONE 4111 02:59:00,933 --> 02:59:03,770 OF THOSE IS HOW DO WE INCREASE 4112 02:59:03,770 --> 02:59:09,842 THE VALUE FOR THE DATA 4113 02:59:09,842 --> 02:59:20,086 CONTRIBUTORS? 4114 02:59:22,889 --> 02:59:23,990 AND THERE'S A COLLABORATION AND 4115 02:59:23,990 --> 02:59:29,662 THE HUB FACILITATES THAT AND I 4116 02:59:29,662 --> 02:59:34,267 LIKE JINGLIN'S POINT AND SHOULD 4117 02:59:34,267 --> 02:59:35,668 HELP WITH THE CORRECT 4118 02:59:35,668 --> 02:59:37,070 ATTRIBUTION AND HOW DO WE REWARD 4119 02:59:37,070 --> 02:59:38,905 THE PEOPLE WHO GENERATE ALL THE 4120 02:59:38,905 --> 02:59:39,105 DATA? 4121 02:59:39,105 --> 02:59:42,642 AT THE MOMENT YOU CAN ASK FOR 4122 02:59:42,642 --> 02:59:45,178 SOME OF YOUR BUDGET TO GO TO THE 4123 02:59:45,178 --> 02:59:49,716 DATA MANAGEMENT PART BUT PEOPLE 4124 02:59:49,716 --> 02:59:50,917 WRITING RO1s DON'T WANT TO GIVE 4125 02:59:50,917 --> 02:59:52,452 UP THAT PART OF THE COST AND 4126 02:59:52,452 --> 02:59:54,153 NEED A CONVERSATION HOW DO WE 4127 02:59:54,153 --> 02:59:56,689 GET THAT TO BE MORE VALUABLE FOR 4128 02:59:56,689 --> 02:59:58,124 THE DATA CONTRIBUTORS AS WELL AS 4129 02:59:58,124 --> 02:59:59,792 SUPPORT THAT TWO-WAY 4130 02:59:59,792 --> 03:00:01,094 CONVERSATION WITH THE SECONDARY 4131 03:00:01,094 --> 03:00:01,794 DATA USERS. 4132 03:00:01,794 --> 03:00:03,129 THOSE ARE IMPORTANT ISSUES WE 4133 03:00:03,129 --> 03:00:10,770 CAN IMPROVE UPON. 4134 03:00:10,770 --> 03:00:13,373 >> IT COULD BE AS SIMPLE AS THE 4135 03:00:13,373 --> 03:00:14,340 INCLUDE DATA CONTRIBUTORS AND 4136 03:00:14,340 --> 03:00:16,342 AUTHOR ON THAT PAPER IS THE DATA 4137 03:00:16,342 --> 03:00:18,945 IS USED AND THEY CAN USE THAT TO 4138 03:00:18,945 --> 03:00:29,455 SAY YES THAT WAS PART OF THAT. 4139 03:00:30,757 --> 03:00:32,792 >> IT WOULD BE GREAT IF THERE 4140 03:00:32,792 --> 03:00:40,566 ARE PATHWAYS IN CONNECTING THE 4141 03:00:40,566 --> 03:00:47,039 USER. 4142 03:00:47,039 --> 03:00:55,415 >> CAN I ADD TO THE RO1 AND 4143 03:00:55,415 --> 03:00:56,716 BUDGET COMMENT. 4144 03:00:56,716 --> 03:01:01,988 ONE TALKING POINT IS IT'S AN 4145 03:01:01,988 --> 03:01:05,224 INHERENT PART GENERATING THE 4146 03:01:05,224 --> 03:01:05,558 DATA. 4147 03:01:05,558 --> 03:01:09,395 IF THEY BUILD INTO THE LIFE 4148 03:01:09,395 --> 03:01:13,065 CYCLE IT GOES TO A REPOSITORY AT 4149 03:01:13,065 --> 03:01:18,738 THE END LIKE INCLUDING HBO CODES 4150 03:01:18,738 --> 03:01:22,708 COULD BE VALUABLE FOR THE 4151 03:01:22,708 --> 03:01:23,009 RESEARCHER. 4152 03:01:23,009 --> 03:01:24,844 IT'S LIKE THE CONCERT ALREADY 4153 03:01:24,844 --> 03:01:25,411 BUILT IN. 4154 03:01:25,411 --> 03:01:27,146 ASK NIH FOR DATA SHARING MONEY 4155 03:01:27,146 --> 03:01:30,149 IN ALL YOUR GRANTS BUT ALSO HAVE 4156 03:01:30,149 --> 03:01:32,385 WHAT YOU NEED THERE AND CAN 4157 03:01:32,385 --> 03:01:42,628 LEVERAGE THAT. 4158 03:01:43,262 --> 03:01:45,031 >> I TALKED ABOUT QUANTITATIVE 4159 03:01:45,031 --> 03:01:46,199 DATA NEEDED FOR RESEARCHERS BUT 4160 03:01:46,199 --> 03:01:48,201 WE MAY WANT TO THINK OF OTHER 4161 03:01:48,201 --> 03:01:50,436 USERS OF YOUR DATA WITH 4162 03:01:50,436 --> 03:01:52,338 QUALITATIVE DATA LIKE CASE 4163 03:01:52,338 --> 03:01:54,740 STUDIES AND I THINK WE CAN HAVE 4164 03:01:54,740 --> 03:01:56,375 THE COHORT DEVELOPMENT BECAUSE 4165 03:01:56,375 --> 03:01:58,411 THE FAMILIES I THINK WILL 4166 03:01:58,411 --> 03:02:03,683 VOLUNTEER IF THEY SEE A STORY 4167 03:02:03,683 --> 03:02:05,852 AND I DIDN'T SEE THE DS CONNECT 4168 03:02:05,852 --> 03:02:08,354 BEING A HUB FOR DATA AND I THINK 4169 03:02:08,354 --> 03:02:09,222 IT'S IMPORTANT. 4170 03:02:09,222 --> 03:02:14,193 WE DON'T FORGET THE DS CONNECT. 4171 03:02:14,193 --> 03:02:20,366 >> WE LOVE DS CONNECT, 4172 03:02:20,366 --> 03:02:20,900 DR. DEEGAN. 4173 03:02:20,900 --> 03:02:28,374 >> I DIDN'T SEE IT IN YOUR DATA. 4174 03:02:28,374 --> 03:02:34,547 >> I DON'T HAVE TO SHARE MY 4175 03:02:34,547 --> 03:02:35,281 QUALITATIVE DATA FROM THE POLICY 4176 03:02:35,281 --> 03:02:39,352 AND THE ANSWER IS NO, YOU HAVE 4177 03:02:39,352 --> 03:02:41,521 TO SHARE THE QUALITATIVE DATA. 4178 03:02:41,521 --> 03:02:47,226 THE EXAMPLE YOUR GIVING IS MAKE 4179 03:02:47,226 --> 03:02:48,361 YOU TRANSFERRED CONVERSATION 4180 03:02:48,361 --> 03:02:49,762 STORIES LIKE THAT. 4181 03:02:49,762 --> 03:02:53,866 THERE ARE DATA REPOSITORIIES THT 4182 03:02:53,866 --> 03:02:55,635 DO THIS AND NO REASON WHY WE 4183 03:02:55,635 --> 03:02:59,505 CAN'T SHARE THAT KIND OF DATA. 4184 03:02:59,505 --> 03:03:05,811 THERE ARE EXTRA CHALLENGE FOR 4185 03:03:05,811 --> 03:03:07,113 DE-IDENTIFICATION AND TOOLS AND 4186 03:03:07,113 --> 03:03:07,947 WAYS TO MANAGE THAT. 4187 03:03:07,947 --> 03:03:09,949 >> I'M GOING ASK A QUESTION THAT 4188 03:03:09,949 --> 03:03:11,117 IS NOT ANSWERABLE. 4189 03:03:11,117 --> 03:03:12,518 ISN'T THAT GREAT? 4190 03:03:12,518 --> 03:03:14,820 I ENJOYED THE CONVERSATION ABOUT 4191 03:03:14,820 --> 03:03:17,056 WHAT IS PROTECTED AND WHAT ISN'T 4192 03:03:17,056 --> 03:03:19,892 PROTECTED WHEN IT COMES TO 4193 03:03:19,892 --> 03:03:24,297 ACROSS YOUR GUYS' CONVERSATIONS. 4194 03:03:24,297 --> 03:03:25,598 I'M SUMMARIZING A LOT OF THE 4195 03:03:25,598 --> 03:03:26,999 DATA FROM THE DATABASE. 4196 03:03:26,999 --> 03:03:30,403 SO AT WHAT POINT DOES SUMMARIZED 4197 03:03:30,403 --> 03:03:39,445 DATA BECOME DEIDENTIFIED ENOUGH 4198 03:03:39,445 --> 03:03:41,514 AND THE OTHER IS I LOVE WHAT YOU 4199 03:03:41,514 --> 03:03:45,618 GUYS ARE DOING THE GUIDS AND IS 4200 03:03:45,618 --> 03:03:47,820 THERE ANY WAY TO GET THE 4201 03:03:47,820 --> 03:03:48,454 INDIVIDUAL WITH DOWN SYNDROME 4202 03:03:48,454 --> 03:03:50,623 THEIR OWN GUID BECAUSE IF I WERE 4203 03:03:50,623 --> 03:03:52,358 SOMEBODY IN THIS STUDY, I WOULD 4204 03:03:52,358 --> 03:03:53,826 WANT TO KNOW WHERE MY DATA WERE 4205 03:03:53,826 --> 03:03:55,861 BEING USED. 4206 03:03:55,861 --> 03:03:58,965 AND MAKE THAT ISN'T TRI FOR THIS 4207 03:03:58,965 --> 03:04:00,967 COMMUNITY BUT I'D AT LEAST ASK 4208 03:04:00,967 --> 03:04:01,867 THEM IF THEY WANT IT. 4209 03:04:01,867 --> 03:04:02,735 >> TWO QUESTIONS. 4210 03:04:02,735 --> 03:04:12,378 I THINK THEY'RE BOTH FOR ME. 4211 03:04:12,378 --> 03:04:16,382 THERE'S WHERE AGGREGATED DATA 4212 03:04:16,382 --> 03:04:22,021 CAN BE OPEN ACCESSED THERE'S 4213 03:04:22,021 --> 03:04:23,723 PLACE WHERE'S IT'S NOT ALLOWED 4214 03:04:23,723 --> 03:04:24,624 AND AGGREGATE DATA IS WHAT 4215 03:04:24,624 --> 03:04:28,861 OCCURS IN PUBLICATIONS. 4216 03:04:28,861 --> 03:04:31,297 SO BECAUSE YOU'RE ALSO USED TO 4217 03:04:31,297 --> 03:04:32,365 PUBLISHING YOU KNOW WHAT CAN GO 4218 03:04:32,365 --> 03:04:33,566 IN AND WHAT CAN'T. 4219 03:04:33,566 --> 03:04:35,167 THERE ARE OTHER STANDARDS LIKE 4220 03:04:35,167 --> 03:04:36,402 FOR QUALITATIVE DATA OTHER 4221 03:04:36,402 --> 03:04:39,238 COMMUNITIES HAVE SET UP. 4222 03:04:39,238 --> 03:04:41,273 I THINK IT'S SOMEWHAT A KNOWN 4223 03:04:41,273 --> 03:04:42,541 ENTITY AND IF YOU WANT TO TALK 4224 03:04:42,541 --> 03:04:44,977 ABOUT IT WE CAN. 4225 03:04:44,977 --> 03:04:48,080 IN TERMS OF THE GUID IT'S AN 4226 03:04:48,080 --> 03:04:48,547 INTERESTING QUESTION. 4227 03:04:48,547 --> 03:04:50,249 THERE'S A LOT OF RULTZ AROUND 4228 03:04:50,249 --> 03:04:51,917 THEM BECAUSE WE'RE DOING 4229 03:04:51,917 --> 03:04:53,653 SOMETHING SENSITIVE. 4230 03:04:53,653 --> 03:04:58,924 WE'RE ENABLING THE LYNCH 4231 03:04:58,924 --> 03:04:59,959 LINKAGE OF DATA SETS NOBODY 4232 03:04:59,959 --> 03:05:02,728 THOUGHT WOULD BE BEFORE AND IT'S 4233 03:05:02,728 --> 03:05:06,432 GOVERNED BY AN IRB PROTOCOL OR 4234 03:05:06,432 --> 03:05:09,869 SOMETHING ELSE. 4235 03:05:09,869 --> 03:05:11,871 WHEN WE BRING THOSE TOGETHER WE 4236 03:05:11,871 --> 03:05:14,540 NEED EXTRA RULES FOR THE UNKNOWN 4237 03:05:14,540 --> 03:05:14,740 RISK. 4238 03:05:14,740 --> 03:05:16,842 WE DON'T KNOW THE KNOWN RISK 4239 03:05:16,842 --> 03:05:18,711 BECAUSE THERE WAS NEVER ONE 4240 03:05:18,711 --> 03:05:23,082 WHOLE IRB AND WITH THAT THE 4241 03:05:23,082 --> 03:05:24,383 GUIDS ARE ONLY FOR RESEARCH 4242 03:05:24,383 --> 03:05:25,918 PURPOSES AND THERE'S FEDERAL 4243 03:05:25,918 --> 03:05:27,620 LAWS THAT PUT CONSTRAINTS ON 4244 03:05:27,620 --> 03:05:31,724 THIS SORT OF THING BECAUSE WE'RE 4245 03:05:31,724 --> 03:05:36,595 NOT TO RECREATE A SOCIAL 4246 03:05:36,595 --> 03:05:37,830 SECURITY NUMBER IN THE RESOURCE 4247 03:05:37,830 --> 03:05:39,131 SETTING AND THERE'S WAY TO MEET 4248 03:05:39,131 --> 03:05:41,000 THE NEED AND TALKING ABOUT DATA 4249 03:05:41,000 --> 03:05:43,736 SHARED WITHIN THE GUARDRAILS OF 4250 03:05:43,736 --> 03:05:47,673 WHAT YOU'RE IRB ALLOWS TO YOU DO 4251 03:05:47,673 --> 03:05:49,675 BUT WHAT YOU'RE TALKING ABOUT WE 4252 03:05:49,675 --> 03:05:50,509 HAVE TO BE CAREFUL. 4253 03:05:50,509 --> 03:05:52,812 >> I THINK THERE'S WAYS TO GIVE 4254 03:05:52,812 --> 03:05:58,017 BACK TO OUR PARTICIPANTS. 4255 03:05:58,017 --> 03:06:00,619 WE MAY NOT BE ABLE TO A YOUR 4256 03:06:00,619 --> 03:06:02,054 EXACT DATA WAS USED BUT INCLUDE 4257 03:06:02,054 --> 03:06:03,055 DATA AS A WHO WILL WAS USED IN 4258 03:06:03,055 --> 03:06:04,590 THIS STUDY. 4259 03:06:04,590 --> 03:06:08,794 AND THIS IS THE GREAT THINGS WE 4260 03:06:08,794 --> 03:06:11,430 FOUND OUT AND HERE YOU HEAR ME 4261 03:06:11,430 --> 03:06:13,032 PREACH ABOUT THIS A LOT IS A 4262 03:06:13,032 --> 03:06:19,972 READING LEVEL THAT CAN BE 4263 03:06:19,972 --> 03:06:21,373 UNDERSTOOD BY SOMEONE WHOSE NOT 4264 03:06:21,373 --> 03:06:24,143 GOT A SCIENTIFIC BACKGROUND. 4265 03:06:24,143 --> 03:06:27,379 >> AS I STAND HERE I HAVE MORE 4266 03:06:27,379 --> 03:06:29,348 QUESTIONS AN COMMENTS. 4267 03:06:29,348 --> 03:06:30,916 WE'RE INCREASING GETTING THE 4268 03:06:30,916 --> 03:06:32,351 QUESTION BY PARTICIPANTS HOW DO 4269 03:06:32,351 --> 03:06:35,321 I KNOW HOW MUCH MY DATA HAS BEEN 4270 03:06:35,321 --> 03:06:35,588 EMPOWERED. 4271 03:06:35,588 --> 03:06:38,491 INCLUDE COULD BE AN AMAZING 4272 03:06:38,491 --> 03:06:40,292 TESTING GROUND FOR THAT. 4273 03:06:40,292 --> 03:06:42,995 AND I ENCOURAGE TO LOOK AT IT AS 4274 03:06:42,995 --> 03:06:44,430 A TESTING GROUND FOR THINGS 4275 03:06:44,430 --> 03:06:44,997 BROUGHT UP. 4276 03:06:44,997 --> 03:06:51,270 I WANTED TO GIVE QUESTION TO 4277 03:06:51,270 --> 03:06:52,938 JINGLIN AND THE MINUTE A 4278 03:06:52,938 --> 03:06:54,373 SECONDARY USER ENGAGE THE DATA 4279 03:06:54,373 --> 03:06:56,075 SETS NO MATTER HOW GOOD OF A JOB 4280 03:06:56,075 --> 03:07:01,480 YOU DO AS A DCC OR DATA 4281 03:07:01,480 --> 03:07:02,281 CONTRIBUTOR YOU ALWAYS FIND WAYS 4282 03:07:02,281 --> 03:07:04,049 TO IMPROVE THE DATA. 4283 03:07:04,049 --> 03:07:08,354 A CONSISTENT MESSAGE IS USE OF 4284 03:07:08,354 --> 03:07:11,857 DATA CONSISTENTLY IMPROVE 4285 03:07:11,857 --> 03:07:13,325 BECAUSE YOU START ASKING A 4286 03:07:13,325 --> 03:07:14,026 DIFFERENT QUESTION ABOUT THE 4287 03:07:14,026 --> 03:07:14,994 DATA GENERATED. 4288 03:07:14,994 --> 03:07:23,803 CREDIT TO YOU FOR DOING THAT. 4289 03:07:23,803 --> 03:07:25,938 AND HERE WHEN YOU'RE DOING JOINT 4290 03:07:25,938 --> 03:07:27,540 CALLING AS AN EFFORT, YOU'RE 4291 03:07:27,540 --> 03:07:34,180 POTENTIALLY MAKING DISCOVERIES 4292 03:07:34,180 --> 03:07:36,348 THAT PRETTY MUCH GUARANTEE THE 4293 03:07:36,348 --> 03:07:37,183 ORIGINAL CONTRIBUTORS THEM 4294 03:07:37,183 --> 03:07:39,051 RECEIVED WOULD HAVE BEEN ABLE TO 4295 03:07:39,051 --> 03:07:42,488 MAKE LOOKING AT THEIR OWN DATA 4296 03:07:42,488 --> 03:07:44,256 SET AND LOOK AT THE TENSION OF 4297 03:07:44,256 --> 03:07:44,590 DISTRIBUTION. 4298 03:07:44,590 --> 03:07:46,158 ONE AREA OF OPPORTUNITY FOR 4299 03:07:46,158 --> 03:07:47,693 INCLUDE IS TO THINK ABOUT WHAT 4300 03:07:47,693 --> 03:07:49,829 ARE THE CONNECTION POINTS WE CAN 4301 03:07:49,829 --> 03:07:52,431 CREATE IN ADVANCE OF THOSE 4302 03:07:52,431 --> 03:07:53,866 FRAMEWORKS THROUGH TRANSPARENCY 4303 03:07:53,866 --> 03:07:55,501 AROUND PROJECTS AND WHAT PEOPLE 4304 03:07:55,501 --> 03:07:57,203 ARE DOING SO YOU GUYS CAN 4305 03:07:57,203 --> 03:07:58,537 CONNECT NOT JUST BECAUSE YOU'RE 4306 03:07:58,537 --> 03:07:59,538 BY CHANCE IN THE SAME MEETING 4307 03:07:59,538 --> 03:08:02,775 AND CAN SEE EACH OTHER BUT 4308 03:08:02,775 --> 03:08:04,210 THERE'S A MORE FORMAL PROCESS IN 4309 03:08:04,210 --> 03:08:05,811 WAYS TO DRIVE THAT. 4310 03:08:05,811 --> 03:08:07,580 WE'VE SEEN WHEN HAVE YOU 4311 03:08:07,580 --> 03:08:09,348 COMMUNITIES THAT CAN HAPPEN AND 4312 03:08:09,348 --> 03:08:11,483 THE KEY FOR THAT TRANSPARENCY 4313 03:08:11,483 --> 03:08:15,421 THE ACTIVITIES OF RESEARCH. 4314 03:08:15,421 --> 03:08:19,158 AND I THINK THE POLICY SPACE IS 4315 03:08:19,158 --> 03:08:22,561 FOUNDATIONAL BECAUSE DB GAP 4316 03:08:22,561 --> 03:08:25,397 PUBLIS 4317 03:08:25,397 --> 03:08:26,232 PUBLISHES DESCRIPTIONS AND 4318 03:08:26,232 --> 03:08:27,433 EMPOWER THEM SO THE COMMUNITY 4319 03:08:27,433 --> 03:08:29,368 HAS A TRANSPARENT VIEW OF WHAT 4320 03:08:29,368 --> 03:08:30,669 DATA IS BEING USED FOR WHAT, 4321 03:08:30,669 --> 03:08:37,910 WHAT PROJECTS CONNECT AND HOW TO 4322 03:08:37,910 --> 03:08:40,880 EXPERIMENT ON IT AND THAT TO MY 4323 03:08:40,880 --> 03:08:42,615 KNOWLEDGE HAS NOT BEEN DONE 4324 03:08:42,615 --> 03:08:44,350 SUCCESSFULLY AND THINK INCLUDE 4325 03:08:44,350 --> 03:08:46,418 CAN DO THAT MOVING FORWARD. 4326 03:08:46,418 --> 03:08:47,853 AND THE OTHER PART IS PRESSING 4327 03:08:47,853 --> 03:08:50,422 THE QUESTION TO ASK THE 4328 03:08:50,422 --> 03:08:51,857 FOLLOWING WHICH IS, AS YOU'RE 4329 03:08:51,857 --> 03:08:53,559 CONTINUING TO GENERATE DATA WHAT 4330 03:08:53,559 --> 03:08:56,362 YOU'RE ASKING FOR IS DEFINE DATA 4331 03:08:56,362 --> 03:09:03,769 FREEZES ESSENTIALLY. 4332 03:09:03,769 --> 03:09:07,339 YOU CAN CREATE A DATA PROJECT 4333 03:09:07,339 --> 03:09:09,041 AND MAKE DECISIONS ON WHEN ARE 4334 03:09:09,041 --> 03:09:11,477 WE GOING TO DO A JOINT CALL 4335 03:09:11,477 --> 03:09:13,579 ACROSS ALL INCLUDE DATA AS A 4336 03:09:13,579 --> 03:09:14,313 DATA FREEZE? 4337 03:09:14,313 --> 03:09:16,448 AND IT'S CHALLENGING WHEN YOU'RE 4338 03:09:16,448 --> 03:09:18,317 WORKING ACROSS PROJECTS THAT 4339 03:09:18,317 --> 03:09:20,352 AREN'T COORDINATED OR CREATED IN 4340 03:09:20,352 --> 03:09:21,687 RELATIONSHIP TO EACH OTHER. 4341 03:09:21,687 --> 03:09:28,093 THAT'S PROBABLY TE BEST WAY TO 4342 03:09:28,093 --> 03:09:29,361 CREATE UNIFIED PROJECTS TO WORK 4343 03:09:29,361 --> 03:09:29,628 TOGETHER. 4344 03:09:29,628 --> 03:09:31,497 I THINK THE SESSION IS BRINGING 4345 03:09:31,497 --> 03:09:35,167 UP A REALLY AMAZING SET OF 4346 03:09:35,167 --> 03:09:35,935 OPPORTUNITIES AND KEYS IN THE 4347 03:09:35,935 --> 03:09:36,702 COMMUNITY HERE. 4348 03:09:36,702 --> 03:09:38,070 >> ONE LAST BRIEF QUESTION. 4349 03:09:38,070 --> 03:09:43,742 SORRY. 4350 03:09:43,742 --> 03:09:47,713 >> I WANT TO APPRECIATE THE HELP 4351 03:09:47,713 --> 03:09:53,018 FROM DCC AND ADAM'S GROUP AND 4352 03:09:53,018 --> 03:09:55,421 THE OTHERS AND THEY'RE DOING 4353 03:09:55,421 --> 03:09:57,723 THEIR BEST TO MEET THE TEDIOUS 4354 03:09:57,723 --> 03:10:01,694 QUESTIONS ON DATA AND TRYING TO 4355 03:10:01,694 --> 03:10:01,927 IMPROVE. 4356 03:10:01,927 --> 03:10:03,095 THEY ALSO FACE CHALLENGES 4357 03:10:03,095 --> 03:10:05,397 BECAUSE THEY NEED TO GO BACK TO 4358 03:10:05,397 --> 03:10:06,665 DATA CONTRIBUTORS TO SOLVE THE 4359 03:10:06,665 --> 03:10:07,499 QUESTIONS. 4360 03:10:07,499 --> 03:10:11,937 I WAS THINKING AND MAYBE THIS 4361 03:10:11,937 --> 03:10:16,642 HAS BEEN DISCUSSED IN SOME BRIEF 4362 03:10:16,642 --> 03:10:21,747 SESSIONS MAYBE WE SHOULD COME UP 4363 03:10:21,747 --> 03:10:24,883 WITH A PROTOCOL HOW TO COLLECT 4364 03:10:24,883 --> 03:10:26,852 THE DATA SO WE GOT THAT FROM THE 4365 03:10:26,852 --> 03:10:29,121 CONTRIBUTOR FROM THE BEGINNING 4366 03:10:29,121 --> 03:10:32,424 AND IT'S EASIER FOR FURTHER 4367 03:10:32,424 --> 03:10:36,061 HARMONIZATION AND USERS. 4368 03:10:36,061 --> 03:10:39,665 THANK YOU. 4369 03:10:39,665 --> 03:10:42,201 >> IN THE INTEREST OF TIME WE 4370 03:10:42,201 --> 03:10:44,336 CAN'T ASK FOR MORE QUESTIONS AND 4371 03:10:44,336 --> 03:10:44,937 ASK DURING THE COFFEE BREAK. 4372 03:10:44,937 --> 03:10:55,114 THANK YOU. 4373 03:11:25,733 --> 03:11:29,703 >> WE'LL BE STARTING PROPERLY AT 4374 03:11:29,703 --> 03:11:30,271 2:10. 4375 03:11:30,271 --> 03:11:33,074 IF YOU DON'T NEED A COFFEE WE 4376 03:11:33,074 --> 03:11:33,808 RECOMMEND STAYING CLOSE. 4377 03:11:33,808 --> 03:11:34,642 I KNOW SOME HAVE FLIGHTS THIS 4378 03:11:34,642 --> 03:11:34,875 EVENING. 4379 03:11:34,875 --> 03:11:34,942 4380 03:11:41,835 --> 03:11:42,469 >> HELLO. 4381 03:11:42,469 --> 03:11:42,903 GOOD AFTERNOON. 4382 03:11:42,903 --> 03:11:44,471 WE'LL GET STARTED AS PEOPLE MAKE 4383 03:11:44,471 --> 03:11:46,173 THEIR WAY BACK IN FROM THE 4384 03:11:46,173 --> 03:11:47,307 COFFEE BREAK FOR THE INTEREST OF 4385 03:11:47,307 --> 03:11:49,309 TIME HAVE A HARD STOP AT 3:00 4386 03:11:49,309 --> 03:11:52,713 FOR THE NEXT SESSION. 4387 03:11:52,713 --> 03:11:56,016 SO I'M ONE OF THE PROGRAM 4388 03:11:56,016 --> 03:11:58,085 DIRECTORS AT NICHD AND ALSO 4389 03:11:58,085 --> 03:12:00,120 LEADING THE DIVERSITY, EQUITY, 4390 03:12:00,120 --> 03:12:02,022 INCLUSION AND ACCESSIBILITY 4391 03:12:02,022 --> 03:12:09,930 INITIATIVES FOR INCLUDE. 4392 03:12:09,930 --> 03:12:13,634 THE BEST PANEL IS FOR THE END OF 4393 03:12:13,634 --> 03:12:15,202 THE TWO DAY FANTASTIC MEETINGS. 4394 03:12:15,202 --> 03:12:18,305 WE HEARD ABOUT COMMUNITY 4395 03:12:18,305 --> 03:12:19,773 ENGAGEMENT INCLUDING COMMUNITY 4396 03:12:19,773 --> 03:12:24,845 MEMBERS, FAMILIES, CAREGIVERS AN 4397 03:12:24,845 --> 03:12:26,013 WILL HEAR FROM OUR TERRIFIC 4398 03:12:26,013 --> 03:12:28,148 MEMBERS OF OUR PANELS ABOUT 4399 03:12:28,148 --> 03:12:34,655 THEIR ACTIVITIES IN THIS SPACE. 4400 03:12:34,655 --> 03:12:39,059 I'M JUST GOING GIVE A BRIEF 4401 03:12:39,059 --> 03:12:39,326 OVERVIEW. 4402 03:12:39,326 --> 03:12:41,061 I'M PREACHING TO THE CHOIR. 4403 03:12:41,061 --> 03:12:42,663 WE KNOW WE NEED TO ENGAGE THE 4404 03:12:42,663 --> 03:12:44,031 COMMUNITY AND HAVE SEEN SOME OF 4405 03:12:44,031 --> 03:12:53,140 THE SLIDES. 4406 03:12:53,140 --> 03:12:54,474 WE'VE ADVANCED MEDICAL TREATMENT 4407 03:12:54,474 --> 03:12:59,846 AND CURRENTLY WE'RE LOOKING INTO 4408 03:12:59,846 --> 03:13:01,315 THE AGING POPULATION HAVING 4409 03:13:01,315 --> 03:13:03,850 DEMENTIA AND ALZHEIMER'S. 4410 03:13:03,850 --> 03:13:05,285 THOUGH WE'VE MADE STRIDES IN 4411 03:13:05,285 --> 03:13:06,553 INCREASING THE LIFE SPAN WE NOW 4412 03:13:06,553 --> 03:13:12,092 HAVE TO FOCUS ON AGING ISSUES. 4413 03:13:12,092 --> 03:13:14,528 WE HAD THE SLIDE IN A PREVIOUS 4414 03:13:14,528 --> 03:13:16,930 PRESENTATION THOUGH WE HAVE MADE 4415 03:13:16,930 --> 03:13:18,632 STRIDES IN LIFE EXPECTANCY 4416 03:13:18,632 --> 03:13:23,904 THERE'S A HUGE HEALTH DISPARITY. 4417 03:13:23,904 --> 03:13:25,639 ALL THIS DATA IS A COUPLE 4418 03:13:25,639 --> 03:13:27,441 DECADES OLD. 4419 03:13:27,441 --> 03:13:29,576 WE HAVE NOT CLOSED THE GAP IN 4420 03:13:29,576 --> 03:13:30,744 LIFE EXPECTANCY WHEN WE LOOK AT 4421 03:13:30,744 --> 03:13:32,713 OTHER RACE. 4422 03:13:32,713 --> 03:13:35,148 I KNOW DR. EGAN HAD A QUESTION 4423 03:13:35,148 --> 03:13:37,017 ABOUT DS CONNECT AND WHY IT 4424 03:13:37,017 --> 03:13:38,285 WASN'T IN THE PREVIOUS SESSION 4425 03:13:38,285 --> 03:13:40,187 BUT IT'S PART OF THE INCLUDE 4426 03:13:40,187 --> 03:13:46,093 DCC. 4427 03:13:46,093 --> 03:13:51,898 IT'S IN TRANSITION BUT HAS BEEN 4428 03:13:51,898 --> 03:13:53,533 OPERATIONAL MORE THAN 10 YEARS 4429 03:13:53,533 --> 03:13:59,840 AND LAUNCHED IN 2013 AND ALL 4430 03:13:59,840 --> 03:14:10,384 ONLINE, CONFIDENTIAL AND WE HAVE 4431 03:14:15,489 --> 03:14:16,657 MEDICAL AND RESEARCH 4432 03:14:16,657 --> 03:14:17,391 PROFESSIONALS WHO USED THE 4433 03:14:17,391 --> 03:14:19,226 REGISTRY TO RECRUIT FOR THE 4434 03:14:19,226 --> 03:14:19,493 STUDIES. 4435 03:14:19,493 --> 03:14:21,795 WE HAVE A LOT OF INCLUDE FUNDED 4436 03:14:21,795 --> 03:14:22,496 INVESTIGATORS WHO HAVE BEEN 4437 03:14:22,496 --> 03:14:25,198 USING THE REGISTRY TO RECRUIT 4438 03:14:25,198 --> 03:14:27,601 THOR FOR THE STUDY AND MORE THAN 4439 03:14:27,601 --> 03:14:35,042 100 PROJECTS HAVE BENEFITTED BY 4440 03:14:35,042 --> 03:14:45,452 APPLYING FOR DS CONNECT. 4441 03:14:45,919 --> 03:14:50,057 THERE'S A LOT OF WORK TO DO NOT 4442 03:14:50,057 --> 03:14:52,159 JUST FOR OUR BUT OTHER STUDIES 4443 03:14:52,159 --> 03:14:57,364 HAVE ISSUES. 4444 03:14:57,364 --> 03:15:01,468 WE'RE AWARE WE HAVE TO DO 4445 03:15:01,468 --> 03:15:04,171 ENGAGEMENT OUTREACH NOR STUDIES 4446 03:15:04,171 --> 03:15:14,514 WE SUPPORT AND FUND. 4447 03:15:17,451 --> 03:15:18,685 IT THERE'S BEEN COMMUNITY 4448 03:15:18,685 --> 03:15:22,055 ENGAGEMENT AND OUTREACH. 4449 03:15:22,055 --> 03:15:24,191 WE ATTEND A LOT OF THESE EVENTS. 4450 03:15:24,191 --> 03:15:34,735 ONE OF THE KEY ELEMENTS IS ALSO 4451 03:15:36,503 --> 03:15:38,071 SHARING IN THE OUTCOME AND THE 4452 03:15:38,071 --> 03:15:39,172 LAST PANEL TALKED ABOUT TRYING 4453 03:15:39,172 --> 03:15:41,708 TO DISSEMINATE THE INFORMATION 4454 03:15:41,708 --> 03:15:43,710 TO FAMILIES IN A READING LEVEL 4455 03:15:43,710 --> 03:15:51,718 THEY CAN UNDERSTAND AND WE ALSO 4456 03:15:51,718 --> 03:15:52,152 TOOK PART. 4457 03:15:52,152 --> 03:16:01,027 THIS IS EFFORT FROM OUR TEAM AND 4458 03:16:01,027 --> 03:16:04,164 WE WORKED ON A LOT OF EVENTS FOR 4459 03:16:04,164 --> 03:16:08,068 COMMUNITY ENGAGEMENT. 4460 03:16:08,068 --> 03:16:09,870 I'M PLEASED TO INTRODUCE 4461 03:16:09,870 --> 03:16:12,305 DR. COHEN READING THE 4462 03:16:12,305 --> 03:16:17,511 RECRUITMENT AND OUTREACH CORPS 4463 03:16:17,511 --> 03:16:19,846 OF THE ALZHEIMER'S DISEASE 4464 03:16:19,846 --> 03:16:21,948 ENGAGEMENT CORPS AND TALK ABOUT 4465 03:16:21,948 --> 03:16:22,416 HER COMMUNITY-BASED 4466 03:16:22,416 --> 03:16:32,826 PARTICIPATORY RESEARCH. 4467 03:16:36,930 --> 03:16:38,565 >> THANK YOU FOR THE INVITATION. 4468 03:16:38,565 --> 03:16:41,568 IT'S BEEN A GREAT COUPLE DAYS 4469 03:16:41,568 --> 03:16:43,270 AND I'VE GOTTEN WONDERFUL IDEAS 4470 03:16:43,270 --> 03:16:44,171 AND LEARNED SO MUCH. 4471 03:16:44,171 --> 03:16:45,572 I'M GOING TALK A LITTLE BIT 4472 03:16:45,572 --> 03:16:49,376 ABOUT OUR EXPERIENCE IN THE 4473 03:16:49,376 --> 03:16:53,914 ABC-DS STUDY WITH COMMUNITY 4474 03:16:53,914 --> 03:16:56,149 ENGAGEMENT AND FOCUSSING ON 4475 03:16:56,149 --> 03:16:58,051 COMMUNITY-BASED PARTICIPATORY 4476 03:16:58,051 --> 03:17:00,620 RESEARCH AND FORMING 4477 03:17:00,620 --> 03:17:01,188 PARTNERSHIPS WITH THE DOWN 4478 03:17:01,188 --> 03:17:05,725 SYNDROME COMMUNITY. 4479 03:17:05,725 --> 03:17:09,162 WHAT IS GOAL? 4480 03:17:09,162 --> 03:17:10,497 DISSEMINATE EDUCATIONAL 4481 03:17:10,497 --> 03:17:12,132 MATERIALS REGARDING THE 4482 03:17:12,132 --> 03:17:13,300 IMPORTANCE OF RESEARCH AND 4483 03:17:13,300 --> 03:17:15,402 RESEARCH METHODS SPECIFICALLY IN 4484 03:17:15,402 --> 03:17:18,104 ALZHEIMER'S DISEASE IN ADULTS 4485 03:17:18,104 --> 03:17:23,276 WITH DOWN SYNDROME AND GENERATE 4486 03:17:23,276 --> 03:17:26,179 MATERIALS THAT ARE CULTURALLY 4487 03:17:26,179 --> 03:17:31,184 APPROPRIATE TO BRAIN AGING IN 4488 03:17:31,184 --> 03:17:32,052 DOWN SYNDROME AND THE THIRD AIM 4489 03:17:32,052 --> 03:17:37,791 AND THE THIRD AND NOT THE FIRST 4490 03:17:37,791 --> 03:17:39,759 AIM IS TO INCREASE RECRUITMENT 4491 03:17:39,759 --> 03:17:40,560 OF INDIVIDUALS WITH DOWN 4492 03:17:40,560 --> 03:17:41,595 SYNDROME IF THE STUDY. 4493 03:17:41,595 --> 03:17:42,996 OUR GOAL IS PARTNERSHIP WITH THE 4494 03:17:42,996 --> 03:17:45,165 COMMUNITY AND TO MEET THE 4495 03:17:45,165 --> 03:17:46,266 COMMUNITY WHERE THEY ARE. 4496 03:17:46,266 --> 03:17:48,969 FROM THAT WE HOPE RECRUITMENT 4497 03:17:48,969 --> 03:17:49,536 WILL COME. 4498 03:17:49,536 --> 03:17:52,138 IT'S A SECONDARY AIM OF OUR 4499 03:17:52,138 --> 03:17:55,642 CORE. 4500 03:17:55,642 --> 03:17:58,778 OUR MODEL IS ACROSS THE SPECTRUM 4501 03:17:58,778 --> 03:18:00,780 OF COMMUNITY ENGAGEMENT BORROWED 4502 03:18:00,780 --> 03:18:02,082 FROM AN ORGANIZATION CALLED 4503 03:18:02,082 --> 03:18:05,318 FACILITATING POWER. 4504 03:18:05,318 --> 03:18:06,920 YOU CAN SEE THE TRADITIONAL 4505 03:18:06,920 --> 03:18:10,323 STORY ON ONE HAND IS TRICKY THE 4506 03:18:10,323 --> 03:18:12,158 TRADITIONAL MODEL IS 4507 03:18:12,158 --> 03:18:18,298 HISTORICALLY BEEN TO INFORM THE 4508 03:18:18,298 --> 03:18:19,132 COMMUNITY WITH RELEVANT RESEARCH 4509 03:18:19,132 --> 03:18:20,567 WE CAN FIND. 4510 03:18:20,567 --> 03:18:23,136 WHAT WE TRIED TO MOVE THE 4511 03:18:23,136 --> 03:18:24,137 APPROACH TO IS CONSULTING WITH 4512 03:18:24,137 --> 03:18:25,438 THE COMMUNITY AND INVOLVING THE 4513 03:18:25,438 --> 03:18:26,806 COMMUNITY AND COLLABORATING WITH 4514 03:18:26,806 --> 03:18:27,874 THE COMMUNITY IN ORDER TO 4515 03:18:27,874 --> 03:18:33,013 PERFORM OUR RESEARCH STUDIES 4516 03:18:33,013 --> 03:18:37,918 WITH OUR GOAL BEING EVENTUAL 4517 03:18:37,918 --> 03:18:38,785 DEMOCRATIC PARTICIPATION BETWEEN 4518 03:18:38,785 --> 03:18:41,922 THE COMMUNITY AND SHARED 4519 03:18:41,922 --> 03:18:47,427 GOVERNANCE OF OUR STUDIES AND 4520 03:18:47,427 --> 03:18:48,762 RESEARCH DRIVEN AND ESSENTIALLY 4521 03:18:48,762 --> 03:18:50,630 NOTHING FOR US WITHOUT US. 4522 03:18:50,630 --> 03:18:52,465 THE COMMUNITY WILL BE INVOLVED 4523 03:18:52,465 --> 03:18:57,103 IN EVERY STEP OF THE PROCESS. 4524 03:18:57,103 --> 03:18:58,538 SOME OF THE THINGS WE'VE BEEN 4525 03:18:58,538 --> 03:19:00,173 WORKING ON ARE TO ENSURE AT 4526 03:19:00,173 --> 03:19:02,108 EVERY STEP OF THE WAY COMMUNITY 4527 03:19:02,108 --> 03:19:03,843 MEMBERS WITH DOWN SYNDROME AND 4528 03:19:03,843 --> 03:19:05,712 THEIR LOVED ONES HAVE A SEAT AT 4529 03:19:05,712 --> 03:19:08,915 THE TABLE. 4530 03:19:08,915 --> 03:19:11,885 SO YOU HEARD DR. TOMI TALK ABOUT 4531 03:19:11,885 --> 03:19:14,354 THIS AND DR. RAFII WE'RE 4532 03:19:14,354 --> 03:19:16,156 ENGAGING IN EVERY STEP OF THE 4533 03:19:16,156 --> 03:19:26,333 RESEARCH. 4534 03:19:32,739 --> 03:19:34,941 AND WE'VE BEEN WORKING VERY HARD 4535 03:19:34,941 --> 03:19:37,377 TO IDENTIFY HOW OUR RESEARCH CAN 4536 03:19:37,377 --> 03:19:38,745 BE OF SERVICE TO THE COMMUNITY 4537 03:19:38,745 --> 03:19:40,880 AND ONE OF THE CRITICAL PIECES 4538 03:19:40,880 --> 03:19:43,216 OF THIS IS NOT SAYING WHAT WE 4539 03:19:43,216 --> 03:19:45,318 THINK OUR RESEARCH IS A SERVICE 4540 03:19:45,318 --> 03:19:50,490 TO THE COMMUNITY BUT TALKING TO 4541 03:19:50,490 --> 03:19:56,696 THE COMMUNITY OF HOW WE CAN BE A 4542 03:19:56,696 --> 03:19:58,832 SERVICE AND HIT-AND-RUN 4543 03:19:58,832 --> 03:19:59,966 APPROACHES WHERE WE PROMISE LOTS 4544 03:19:59,966 --> 03:20:00,967 OF THINGS TO COMMUNITIES AND 4545 03:20:00,967 --> 03:20:02,402 WHEN THE RESEARCH STUDY IS 4546 03:20:02,402 --> 03:20:06,406 FINISHED OR WHEN THE FUNDING 4547 03:20:06,406 --> 03:20:08,642 RUNS OUT, THESE THEMES 4548 03:20:08,642 --> 03:20:08,942 DISAPPEAR. 4549 03:20:08,942 --> 03:20:11,478 A TRUE PARTNERSHIP CAN'T DO THAT 4550 03:20:11,478 --> 03:20:13,079 AND IDENTIFY CHALLENGES AND 4551 03:20:13,079 --> 03:20:16,149 BARRIERS TO RESEARCH 4552 03:20:16,149 --> 03:20:16,483 PARTICIPATION. 4553 03:20:16,483 --> 03:20:21,454 THIS INCLUDES COSTS OF MONEY AND 4554 03:20:21,454 --> 03:20:23,990 TIME AND ACKNOWLEDGING MANY 4555 03:20:23,990 --> 03:20:24,624 INDIVIDUALS IN THE DOWN SYNDROME 4556 03:20:24,624 --> 03:20:26,693 COMMUNITY ARE WORKING, MAY LOSE 4557 03:20:26,693 --> 03:20:31,231 INCOME TO PARTICIPATE IN OUR 4558 03:20:31,231 --> 03:20:32,232 STUDIES. 4559 03:20:32,232 --> 03:20:34,434 IDENTIFYING NOVEL WAYS TO AVOID 4560 03:20:34,434 --> 03:20:37,504 THOSE BARRIERS AND WE HAVE TO 4561 03:20:37,504 --> 03:20:39,205 ACKNOWLEDGE THE FACTORS DIFFER 4562 03:20:39,205 --> 03:20:39,773 BY COMMUNITY. 4563 03:20:39,773 --> 03:20:41,508 DOWN SYNDROME COMMUNITY IS NOT A 4564 03:20:41,508 --> 03:20:42,008 MONOLITH LIKE ANY OTHER 4565 03:20:42,008 --> 03:20:46,746 COMMUNITY. 4566 03:20:46,746 --> 03:20:50,116 WE HAVE TO DESIGN RESEARCH 4567 03:20:50,116 --> 03:20:54,020 STUDIES TO BE AS INCLUSIVE AS 4568 03:20:54,020 --> 03:20:54,421 POSSIBLE. 4569 03:20:54,421 --> 03:21:00,160 I WANT TO MENTION ONE OF THE 4570 03:21:00,160 --> 03:21:03,830 THINGS WE WORKED HARD ON CONVENT 4571 03:21:03,830 --> 03:21:05,699 IN RESEARCH STUDIES AND IDENTIFY 4572 03:21:05,699 --> 03:21:06,299 BARRIERS IN THE DOWN SYNDROME 4573 03:21:06,299 --> 03:21:13,740 COMMUNITY. 4574 03:21:13,740 --> 03:21:15,475 WE KNOW THERE'S' LACK OF TRUST 4575 03:21:15,475 --> 03:21:18,144 AND YOU HEAR YOU DON'T KNOW 4576 03:21:18,144 --> 03:21:21,314 WHAT'S HAPPENING IN LABORATORY. 4577 03:21:21,314 --> 03:21:22,582 IF YOU READ OUR INFORMED CONSENT 4578 03:21:22,582 --> 03:21:26,119 OFTEN THERE'S CONTRADICTIONS 4579 03:21:26,119 --> 03:21:32,125 REQUIRED BY OUR IRBs ABOUT 4580 03:21:32,125 --> 03:21:33,660 KEEPING YOUR INFORMATION SAFE 4581 03:21:33,660 --> 03:21:36,162 AND THIS BECOMES CONFUSING TO 4582 03:21:36,162 --> 03:21:42,068 INDIVIDUALS. 4583 03:21:42,068 --> 03:21:43,670 ENGAGE THE COMMUNITY EARLY AND 4584 03:21:43,670 --> 03:21:46,606 TAKING IT TO OUR IRBs AND SAYING 4585 03:21:46,606 --> 03:21:48,742 THE COMMUNITY HAS IDENTIFIED 4586 03:21:48,742 --> 03:21:51,511 THESE THINGS AS CONFUSING AS 4587 03:21:51,511 --> 03:21:52,912 CONTRADICTORY HAS BEEN HELPFUL 4588 03:21:52,912 --> 03:21:56,116 IN IDENTIFYING SOME OF THE 4589 03:21:56,116 --> 03:22:06,593 BARRIERS AND BUILDING TRUST. 4590 03:22:07,427 --> 03:22:14,768 AND IN COLLABORATION WITH ABDC 4591 03:22:14,768 --> 03:22:16,136 TO ENSURE THESE INDIVIDUALS 4592 03:22:16,136 --> 03:22:19,906 DON'T NEED TO MISS WORK AND IT'S 4593 03:22:19,906 --> 03:22:26,112 AN EASIER TIME FRAME FOR THESE 4594 03:22:26,112 --> 03:22:28,148 FOLKS WAS GETTING FEEDBACK FROM 4595 03:22:28,148 --> 03:22:34,687 THESE INDIVIDUALS. 4596 03:22:34,687 --> 03:22:36,156 WHILE IN DIFFERENT STATES AND 4597 03:22:36,156 --> 03:22:39,225 DIFFERENT LOCATIONS YOU'RE GOING 4598 03:22:39,225 --> 03:22:41,795 HAVE DIFFERENT REQUIREMENTS FOR 4599 03:22:41,795 --> 03:22:44,097 LARs OR CAREGIVERS OR THE 4600 03:22:44,097 --> 03:22:46,332 INDIVIDUALS RESPONSIBLE FOR 4601 03:22:46,332 --> 03:22:48,334 SIGNING CONSENT DOESN'T MEAN THE 4602 03:22:48,334 --> 03:22:49,769 CONSENT SHOULD ONLY BE 4603 03:22:49,769 --> 03:22:50,904 ACCESSIBLE TO THE LARs. 4604 03:22:50,904 --> 03:22:58,511 WE DESIGNED A VARIETY OF THINGS 4605 03:22:58,511 --> 03:23:03,116 THAT AND INCLUDE SOCIAL STORIES 4606 03:23:03,116 --> 03:23:05,018 AND BOOKS TO THAT ARE MORE 4607 03:23:05,018 --> 03:23:07,854 ACCESSIBLE TO INDIVIDUALS WITH 4608 03:23:07,854 --> 03:23:09,088 DOWN SYNDROME. 4609 03:23:09,088 --> 03:23:10,657 I'M HIGHLIGHTING ON THE WEB PAGE 4610 03:23:10,657 --> 03:23:13,059 THERE'S ACCESS TO SOCIAL STORIES 4611 03:23:13,059 --> 03:23:16,162 ABOUT MRIs AND PET SCANS AND 4612 03:23:16,162 --> 03:23:18,097 GREAT VIDEOS ON THE WEBSITES AS 4613 03:23:18,097 --> 03:23:18,531 WELL. 4614 03:23:18,531 --> 03:23:22,335 IT WILL ALLOW INDIVIDUALS TO BE 4615 03:23:22,335 --> 03:23:22,869 ABLE TO UNDERSTAND THESE 4616 03:23:22,869 --> 03:23:24,504 RESEARCH PROCEDURES THAT WE'RE 4617 03:23:24,504 --> 03:23:27,173 DOING MORE EASILY AND EVEN IF 4618 03:23:27,173 --> 03:23:27,974 THE INDIVIDUAL WITH DOWN 4619 03:23:27,974 --> 03:23:29,209 SYNDROME ISN'T THE PERSON 4620 03:23:29,209 --> 03:23:31,010 SIGNING THE CONSENT OFFICIALLY, 4621 03:23:31,010 --> 03:23:34,013 THEY SHOULD STILL BE ABLE TO 4622 03:23:34,013 --> 03:23:35,715 UNDERSTAND TO THE FULLEST EXTENT 4623 03:23:35,715 --> 03:23:37,550 WHAT THE RESEARCH PROCEDURES ARE 4624 03:23:37,550 --> 03:23:38,184 DOING AND HOW HAVE A VOICE IN 4625 03:23:38,184 --> 03:23:40,386 THE PROCESS. 4626 03:23:40,386 --> 03:23:43,823 IN ADDITION TO THAT, I WANTED TO 4627 03:23:43,823 --> 03:23:46,259 TALK A LITTLE BIT AND I KNOW OUR 4628 03:23:46,259 --> 03:23:47,694 CRAB TEAM WHO HAD A POSTER 4629 03:23:47,694 --> 03:23:50,163 EARLIER HAS BEEN TALKING TO MANY 4630 03:23:50,163 --> 03:23:53,900 OF YOU AT THE MEETING TODAY THAT 4631 03:23:53,900 --> 03:23:58,371 WE HAVE WE ARE FUNDED RIGHT NOW 4632 03:23:58,371 --> 03:24:01,007 TO EXECUTE THE FIRST 4633 03:24:01,007 --> 03:24:03,009 COMMUNITY-LED IMMERSION 4634 03:24:03,009 --> 03:24:08,047 EXPERIENCE WITH OUR ABC-DS TEAM 4635 03:24:08,047 --> 03:24:09,415 FOR COMMUNITY-BASED 4636 03:24:09,415 --> 03:24:12,151 PARTICIPATORY TRAININGS IN THIS 4637 03:24:12,151 --> 03:24:13,253 GROUP. 4638 03:24:13,253 --> 03:24:16,689 WE DEVELOPED AND WE NEED BUT THE 4639 03:24:16,689 --> 03:24:17,991 TEAM AND THE INFRASTRUCTURE 4640 03:24:17,991 --> 03:24:22,362 BEHIND THE IT SCENES DEVELOPED 4641 03:24:22,362 --> 03:24:27,200 AN IN DEPTH CBPR CURRICULUM WITH 4642 03:24:27,200 --> 03:24:27,767 ANTI-RACISM PRACTICE. 4643 03:24:27,767 --> 03:24:30,737 WE HAD A COHORT WITH OUR 86 4644 03:24:30,737 --> 03:24:33,039 MEMBERS JOINING US VIRTUALLY FOR 4645 03:24:33,039 --> 03:24:39,846 THE TRAINING AND SAEFS HOW -- 4646 03:24:39,846 --> 03:24:41,414 ASSESS HOW THEY'LL DESIGN 4647 03:24:41,414 --> 03:24:43,283 TRAININGS TO ADDRESS NEEDS WITH 4648 03:24:43,283 --> 03:24:46,386 OUR LONG-TERM GOAL GOING BACK TO 4649 03:24:46,386 --> 03:24:47,954 THE ORIGINAL FIGURE WHICH IS THE 4650 03:24:47,954 --> 03:24:50,156 CO-FACILITATION OF RESEARCH WHEN 4651 03:24:50,156 --> 03:24:54,494 RESEARCHERS AND THE COMMUNITY. 4652 03:24:54,494 --> 03:24:58,197 THE LAST THING I WANTED TO 4653 03:24:58,197 --> 03:25:00,600 MENTION HERE IN ANOTHER EFFORT 4654 03:25:00,600 --> 03:25:02,468 ABC-DS IS MAKING TO MAKE OUR 4655 03:25:02,468 --> 03:25:05,305 RESEARCH MORE ACCESSIBLE IS 4656 03:25:05,305 --> 03:25:06,639 IDENTIFY HOW EVERYONE CAN GET A 4657 03:25:06,639 --> 03:25:07,307 SEAT AT THE TABLE. 4658 03:25:07,307 --> 03:25:09,842 ONE THING WE KNOW IS MANY ARE 4659 03:25:09,842 --> 03:25:12,145 AFFILIATED AT LARGE ACADEMIC 4660 03:25:12,145 --> 03:25:13,980 INSTITUTIONS THAT ARE IN LARGER 4661 03:25:13,980 --> 03:25:15,114 CITIES AND ONE OF THE CHALLENGES 4662 03:25:15,114 --> 03:25:17,951 WITH THAT IS THAT MANY 4663 03:25:17,951 --> 03:25:19,118 INDIVIDUALS IN OTHER LOCATIONS 4664 03:25:19,118 --> 03:25:24,157 GET LEFT BEHIND AND SO IN 4665 03:25:24,157 --> 03:25:25,658 COLLABORATION WITH THE 4666 03:25:25,658 --> 03:25:28,161 UNIVERSITY OF WISCONSIN-MADISON 4667 03:25:28,161 --> 03:25:30,930 BOTH MEMBERS OF THE ABC-DS TEAM 4668 03:25:30,930 --> 03:25:36,602 WE CREATED AND ALLIED -- APPLIED 4669 03:25:36,602 --> 03:25:40,173 FOR FUNDING WITH THE UNIVERSITY 4670 03:25:40,173 --> 03:25:42,875 OF PUERTO RICO AND DOWN SYNDROME 4671 03:25:42,875 --> 03:25:48,681 ASSOCIATION TO BUILD CAPACITY TO 4672 03:25:48,681 --> 03:25:50,149 HAVE ALZHEIMER'S DISEASE AND 4673 03:25:50,149 --> 03:25:51,651 DOWN SYNDROME RESEARCH AND WORK 4674 03:25:51,651 --> 03:25:56,155 WITH THE COMMUNITY TO IDENTIFY 4675 03:25:56,155 --> 03:25:58,057 CHALLENGES IN PARTICIPATION IN 4676 03:25:58,057 --> 03:25:58,491 RESEARCH. 4677 03:25:58,491 --> 03:26:00,159 ONE THING BEFORE I WRAP UP IS 4678 03:26:00,159 --> 03:26:01,728 THE COMMENTARY WE'RE FROM THE 4679 03:26:01,728 --> 03:26:02,161 COMMUNITY. 4680 03:26:02,161 --> 03:26:12,705 I FEEL IT'S IMPORTANT TO SHARE 4681 03:26:13,606 --> 03:26:16,309 THIS AND ONE OF THE MOTHERS SID 4682 03:26:16,309 --> 03:26:19,812 SAID TO THE WE NEED TO CONSIDER 4683 03:26:19,812 --> 03:26:23,516 HOW ADULTS WITH DOWN SYNDROME 4684 03:26:23,516 --> 03:26:27,220 COMMUNITY AND MY DAUGHTER WOULD 4685 03:26:27,220 --> 03:26:29,222 OFTEN SAY MY HEAD FEELS FULL AND 4686 03:26:29,222 --> 03:26:33,626 THEY HAD TO THEIR DAUGHTER WAS 4687 03:26:33,626 --> 03:26:34,794 EXPRESSING DIFFICULTY WITH 4688 03:26:34,794 --> 03:26:37,597 COGNITION AND THINK BUT FOR HER 4689 03:26:37,597 --> 03:26:41,868 IT WAS AS THOUGH HER HEAD FELT 4690 03:26:41,868 --> 03:26:42,702 FULL. 4691 03:26:42,702 --> 03:26:45,104 ANOTHER SAID MY SON DOESN'T DO 4692 03:26:45,104 --> 03:26:46,539 WELL WITH TWO TO THREE STEP 4693 03:26:46,539 --> 03:26:47,840 INSTRUCTION OR QUESTIONS. 4694 03:26:47,840 --> 03:26:49,442 IT DOESN'T MEAN HE DOESN'T 4695 03:26:49,442 --> 03:26:50,877 UNDERSTAND BUT WE HAVE TO GO 4696 03:26:50,877 --> 03:26:52,678 SLOWER AND LET HIM SHARE 4697 03:26:52,678 --> 03:26:53,946 FEELINGS ABOUT EACH STEP. 4698 03:26:53,946 --> 03:26:56,349 HE DOESN'T HAVE LESS VALUE 4699 03:26:56,349 --> 03:26:58,384 BECAUSE IT TAKE HIM LONGER TO 4700 03:26:58,384 --> 03:27:00,353 GET THERE. 4701 03:27:00,353 --> 03:27:01,788 I THINK THESE STATEMENTS WE AS 4702 03:27:01,788 --> 03:27:04,157 RESEARCHERS NEED TO BE HEARING 4703 03:27:04,157 --> 03:27:05,591 AND MODIFYING OUR RESEARCH 4704 03:27:05,591 --> 03:27:06,159 STUDIES TO PETE THESE 4705 03:27:06,159 --> 03:27:11,731 INDIVIDUALS WHERE THEY ARE. 4706 03:27:11,731 --> 03:27:16,002 IN SUMMARY IT'S NOT A ONE-SIZE 4707 03:27:16,002 --> 03:27:17,270 FITS ALL APPROACH. 4708 03:27:17,270 --> 03:27:20,139 IT NEEDS TO BE AN INTERACTIVE 4709 03:27:20,139 --> 03:27:24,177 PROCESS WITH OUR COMMUNITY 4710 03:27:24,177 --> 03:27:30,650 PARTNERS TRAINING IN CULTURAL 4711 03:27:30,650 --> 03:27:31,784 HUMILITY IS KEY AND I'LL STOP 4712 03:27:31,784 --> 03:27:37,023 THERE BUT I WANT TO END WITH ONE 4713 03:27:37,023 --> 03:27:37,757 OTHER QUOTE. 4714 03:27:37,757 --> 03:27:39,158 THIS MOM SAID WE'RE AMONG THE 4715 03:27:39,158 --> 03:27:40,893 FIRST GENERATION TO GET OUT AND 4716 03:27:40,893 --> 03:27:44,664 LIVE INDEPENDENTLY AND LIVE IN 4717 03:27:44,664 --> 03:27:45,031 THE COMMUNITY. 4718 03:27:45,031 --> 03:27:48,401 THEY WERE THE FIRST TO HAVE FULL 4719 03:27:48,401 --> 03:27:51,671 INCLUSION AND SO MANY THINGS AND 4720 03:27:51,671 --> 03:27:52,438 IMPOSSIBILITIES AND GIVES ME 4721 03:27:52,438 --> 03:27:53,573 CHILLS WHEN THINK HOW WE'RE ON 4722 03:27:53,573 --> 03:27:57,944 THE CUSP OF THE TRAILBLAZING 4723 03:27:57,944 --> 03:28:00,146 GENERATION BEING TRAILBLAZERS 4724 03:28:00,146 --> 03:28:00,746 AGAIN IN TREATING ALZHEIMER'S 4725 03:28:00,746 --> 03:28:02,148 DISEASE. 4726 03:28:02,148 --> 03:28:12,325 THANK YOU. 4727 03:28:19,932 --> 03:28:24,137 >> NEXT WE HAVE THE DIRECTOR OF 4728 03:28:24,137 --> 03:28:25,671 THE CENTER FOR HEARING RESEARCH 4729 03:28:25,671 --> 03:28:27,573 AT THE RESEARCH HOSPITAL IN 4730 03:28:27,573 --> 03:28:29,108 OMAHA, NEBRASKA. 4731 03:28:29,108 --> 03:28:31,711 SHE WILL TELL US HOW THEY ARE 4732 03:28:31,711 --> 03:28:33,679 TRAVELLING TO UNDER SERVED 4733 03:28:33,679 --> 03:28:35,414 COMMUNITIES AND RURAL 4734 03:28:35,414 --> 03:28:36,415 COMMUNITIES USING THEIR MOBILE 4735 03:28:36,415 --> 03:28:44,624 RESEARCH VAN. 4736 03:28:44,624 --> 03:28:46,459 >> FIRST, THANK YOU TO THE 4737 03:28:46,459 --> 03:28:46,859 INCLUDE COMMUNITY. 4738 03:28:46,859 --> 03:28:47,727 WE'RE RELATIVELY NEW. 4739 03:28:47,727 --> 03:28:50,163 WE STARTED IN 2018 WITH A 4740 03:28:50,163 --> 03:28:55,001 SUPPLEMENT TO AN EXISTING GRANT. 4741 03:28:55,001 --> 03:28:55,968 I REALLY APPRECIATE IT. 4742 03:28:55,968 --> 03:28:58,671 IT'S BEEN A WELCOMING COMMUNITY 4743 03:28:58,671 --> 03:29:01,240 AND NOW YOU HAVE TO LISTEN TO US 4744 03:29:01,240 --> 03:29:02,408 ASK QUESTIONS ABOUT HEARING IN 4745 03:29:02,408 --> 03:29:07,947 YOUR STUDIES I APPRECIATE THAT. 4746 03:29:07,947 --> 03:29:14,620 THIS IS LIKE SPEED DATING. 4747 03:29:14,620 --> 03:29:17,924 IF YOU HAVE QUESTIONS REACH OUT 4748 03:29:17,924 --> 03:29:19,892 TO ME OR MY COLLEAGUES AND I'LL 4749 03:29:19,892 --> 03:29:21,060 SPEND TIME ON THE IRB BECAUSE 4750 03:29:21,060 --> 03:29:24,163 THAT'S WHAT MOST ARE EXCITED 4751 03:29:24,163 --> 03:29:34,273 ABOUT. 4752 03:29:37,443 --> 03:29:43,115 AND WE HAVE STUDIES FUNDED BY 4753 03:29:43,115 --> 03:29:49,021 THE INCLUDE PROJECT WHICH WE 4754 03:29:49,021 --> 03:29:50,590 UNDER THE UMBRELLA PROJECT AND 4755 03:29:50,590 --> 03:29:52,024 WE WANT TO INCLUDE PRIOR TO 4756 03:29:52,024 --> 03:29:54,026 GETTING INCLUDE FUNDING HEATHER 4757 03:29:54,026 --> 03:29:56,195 HAS A LONG BACKGROUND IN WORK 4758 03:29:56,195 --> 03:29:56,829 WITH INDIVIDUALS WITH DOWN 4759 03:29:56,829 --> 03:29:58,998 SYNDROME AND THE ONLY CHAPTER IN 4760 03:29:58,998 --> 03:30:02,668 ANY TEXTBOOK ON HEARING LOSS IN 4761 03:30:02,668 --> 03:30:04,170 INDIVIDUALS WITH HEARING LOSS 4762 03:30:04,170 --> 03:30:07,773 THAT'S AVAILABLE. 4763 03:30:07,773 --> 03:30:18,251 WE IN MY LAB AND WE'VE BEEN 4764 03:30:19,352 --> 03:30:30,162 DOING AND THANK YOU TO FUND IIN 4765 03:30:31,464 --> 03:30:33,532 SOME MAY OR MAY NOT BE FAMILIAR 4766 03:30:33,532 --> 03:30:36,202 WITH BOYS TOWN AND THERE'S A 4767 03:30:36,202 --> 03:30:40,840 MOVIE I RECOMMEND. 4768 03:30:40,840 --> 03:30:44,810 THE MISSION OF BOYS TOWN HAVE 4769 03:30:44,810 --> 03:30:46,078 HEAVY INVOLVEMENT IN YOUTH 4770 03:30:46,078 --> 03:30:47,913 MENTAL HEALTH, RESIDENTIAL 4771 03:30:47,913 --> 03:30:49,181 TREATMENT CENTERS. 4772 03:30:49,181 --> 03:30:50,283 UNDER SERVED POPULATIONS IN 4773 03:30:50,283 --> 03:30:58,858 GENERAL. 4774 03:30:58,858 --> 03:31:00,459 THAT IS OUR ORGANIZATION AND WE 4775 03:31:00,459 --> 03:31:06,365 HAVE OTHER PROJECTS DESIGN TO 4776 03:31:06,365 --> 03:31:08,801 CREATE CLINICAL TOOLS FOR 4777 03:31:08,801 --> 03:31:17,043 SPANISH/ENGLISH BILINGUALS AND 4778 03:31:17,043 --> 03:31:18,744 THEY STARTED AN INCLUDE PROJECT 4779 03:31:18,744 --> 03:31:23,449 WITHIN A MONTH SO WE ARE VERY 4780 03:31:23,449 --> 03:31:23,883 FORTUNATE. 4781 03:31:23,883 --> 03:31:27,586 THIS IS EVEN A SNAPSHOT OF THE 4782 03:31:27,586 --> 03:31:28,154 TEAM. 4783 03:31:28,154 --> 03:31:30,723 I DON'T WANT TO ACT LIKE AN 4784 03:31:30,723 --> 03:31:32,425 EXPERT IN COMMUNITY-ENGAGED 4785 03:31:32,425 --> 03:31:32,692 RESEARCH. 4786 03:31:32,692 --> 03:31:33,693 I'M NOT. 4787 03:31:33,693 --> 03:31:35,394 I HAVE A TERRIFIC TEAM AND WE 4788 03:31:35,394 --> 03:31:41,934 ALL CONTRIBUTE PARTS AS WELL. 4789 03:31:41,934 --> 03:31:45,905 I'M A PROGRAM DIRECTOR THROUGH 4790 03:31:45,905 --> 03:31:46,939 THE NATIONAL INSTITUTE OF 4791 03:31:46,939 --> 03:31:52,778 MEDICAL SANE SCIENTIST AND I 4792 03:31:52,778 --> 03:31:55,147 TALK ONE MY HANDS SO I'LL KEEP 4793 03:31:55,147 --> 03:31:56,749 HITTING THIS, THESE ARE THE 4794 03:31:56,749 --> 03:31:59,018 THINGS I'LL TALK ABOUT BUT I'LL 4795 03:31:59,018 --> 03:32:01,287 FOCUS ON THE TRAILER. 4796 03:32:01,287 --> 03:32:04,256 I THOUGHT TO DESCRIBE WHAT WE DO 4797 03:32:04,256 --> 03:32:05,691 IN GENERAL. 4798 03:32:05,691 --> 03:32:07,526 WHAT OUR GOALS WERE STUDIED. 4799 03:32:07,526 --> 03:32:09,862 IF I CAN MAKE THE VIDEO WORK 4800 03:32:09,862 --> 03:32:11,097 YOU'LL HEAR HEATHER DESCRIBE IT 4801 03:32:11,097 --> 03:32:12,131 WHICH IS BETTER THAN ME 4802 03:32:12,131 --> 03:32:22,375 DESCRIBING IT. 4803 03:32:28,914 --> 03:32:32,885 >> WE WORK ON INDIVIDUALS IN 4804 03:32:32,885 --> 03:32:35,254 HEALTH CARE AND FIGURING OUT 4805 03:32:35,254 --> 03:32:41,727 FUNDAMENTALS THE WAY THEY'RE -- 4806 03:32:41,727 --> 03:32:43,396 THEIR HEARING WORKS IN EVERY DAY 4807 03:32:43,396 --> 03:32:43,596 LIFE. 4808 03:32:43,596 --> 03:32:47,533 ONE THING CHARACTERISTIC OF 4809 03:32:47,533 --> 03:32:49,769 INDIVIDUAL WITH DOWN SYNDROME 4810 03:32:49,769 --> 03:32:55,441 HAVE NARROW OR SMALL OR EAR 4811 03:32:55,441 --> 03:32:55,875 CANAL. 4812 03:32:55,875 --> 03:32:58,344 ONE BIG GOAL IN OUR PROJECT IS 4813 03:32:58,344 --> 03:33:00,146 TO CHARACTERIZE THAT AND WHAT 4814 03:33:00,146 --> 03:33:04,550 WE'LL BE DOING IS RATHER THAN 4815 03:33:04,550 --> 03:33:07,119 RELYING ON EXTERNAL CALIBRATION 4816 03:33:07,119 --> 03:33:08,821 WE'LL DO A UNIQUE CALIBRATION 4817 03:33:08,821 --> 03:33:09,955 FOR EVERY INDIVIDUAL WHO COMES 4818 03:33:09,955 --> 03:33:12,124 IN SO WE CAN SEE EXACTLY WHAT 4819 03:33:12,124 --> 03:33:14,260 THAT DIFFERENCE WOULD BE AND 4820 03:33:14,260 --> 03:33:16,128 IMPROVE THE WAY THAT WE'RE 4821 03:33:16,128 --> 03:33:21,634 ASSESSING HEARING. 4822 03:33:21,634 --> 03:33:24,403 WE'RE RECRUITING INDIVIDUALS 4823 03:33:24,403 --> 03:33:26,305 ACROSS THE LIFE SPAN. 4824 03:33:26,305 --> 03:33:31,010 STUDIES FOR INFANTS, 4825 03:33:31,010 --> 03:33:34,413 PRESCHOOLERS AND ADULTS AND 4826 03:33:34,413 --> 03:33:34,847 OLDER ADULTS. 4827 03:33:34,847 --> 03:33:36,582 OUR IMMEDIATE GOALS ARE TO 4828 03:33:36,582 --> 03:33:37,750 IMPROVE THE WAY WE TEST HEARING 4829 03:33:37,750 --> 03:33:39,718 IN THE CLINIC AND FIGURE OUT THE 4830 03:33:39,718 --> 03:33:42,688 THINGS THAT BENEFIT THEM WHEN 4831 03:33:42,688 --> 03:33:44,290 LISTENING IN REAL WORLD TYPE 4832 03:33:44,290 --> 03:33:46,826 ENVIRONMENTS LIKE IN BACKGROUND 4833 03:33:46,826 --> 03:33:47,993 NOISE AND TO SEE IF THERE ARE 4834 03:33:47,993 --> 03:33:54,066 THINGS WE CAN DO TO MODIFY 4835 03:33:54,066 --> 03:33:56,168 INTERVENE IF THERE ARE PROBLEMS 4836 03:33:56,168 --> 03:34:00,172 TO IMPROVE OUTCOMES LATER FOR 4837 03:34:00,172 --> 03:34:05,578 THEM. 4838 03:34:05,578 --> 03:34:10,716 THIS BABY HAS GONE ON TO BE A 4839 03:34:10,716 --> 03:34:12,151 BABY MODEL IN NEBRASKA. 4840 03:34:12,151 --> 03:34:14,253 WE'RE PRETTY CLINICAL 4841 03:34:14,253 --> 03:34:14,587 TRANSLATIONAL. 4842 03:34:14,587 --> 03:34:16,989 MY RESEARCH IS MORE AUDITORY 4843 03:34:16,989 --> 03:34:18,390 DEVELOPMENT BROADLY BUT 4844 03:34:18,390 --> 03:34:23,362 INTERFACE WITH CLINICIANS, 4845 03:34:23,362 --> 03:34:28,067 COMMUNITY AND RESEARCH TEAMS AND 4846 03:34:28,067 --> 03:34:30,469 WE ALSO HAVE ONE WHICH HAS BEEN 4847 03:34:30,469 --> 03:34:32,304 TERRIFIC IN TERMS OF GETTING 4848 03:34:32,304 --> 03:34:33,172 FEEDBACK. 4849 03:34:33,172 --> 03:34:36,575 WE ARE CURRENTLY LAUNCHING A 4850 03:34:36,575 --> 03:34:38,277 QUALITATIVE SURVEY TO GET A 4851 03:34:38,277 --> 03:34:40,179 HANDLE ON ACCESS TO HEARING 4852 03:34:40,179 --> 03:34:42,414 HEALTH CARE IN DIFFERENT 4853 03:34:42,414 --> 03:34:42,715 COMMUNITIES. 4854 03:34:42,715 --> 03:34:44,683 THEY'VE BEEN TREMENDOUS IN TERMS 4855 03:34:44,683 --> 03:34:46,886 OF HELPING US GUIDE WHAT WE 4856 03:34:46,886 --> 03:34:57,429 SHOULD BE PUTTING IN THE SURVEY. 4857 03:34:59,865 --> 03:35:03,903 WE WERE ABLE TO DO REMOTE 4858 03:35:03,903 --> 03:35:07,172 TESTING AN IT'S SENDING IT HOME 4859 03:35:07,172 --> 03:35:09,875 WITH FAMILIES AND WORKED WELL 4860 03:35:09,875 --> 03:35:11,911 AND AUDITORY STUDIES ARE NOT 4861 03:35:11,911 --> 03:35:16,148 EASY IN A HOME AND HAVE 4862 03:35:16,148 --> 03:35:19,251 COLLEAGUES INTERESTED IN THESE 4863 03:35:19,251 --> 03:35:20,853 ISSUES AS WELL WE'RE DOING NOR 4864 03:35:20,853 --> 03:35:23,088 STUDIES THIS SUMMER AND FAMILY 4865 03:35:23,088 --> 03:35:24,690 LOVE IT BECAUSE WE DROP OFF 4866 03:35:24,690 --> 03:35:26,525 EQUIPMENT AT THEIR HOME AND WITH 4867 03:35:26,525 --> 03:35:27,893 AN INSTRUCTION MANUAL AND THEY 4868 03:35:27,893 --> 03:35:31,630 REALLY LOVED IT. 4869 03:35:31,630 --> 03:35:33,599 SO I WANTED TO TALK ABOUT WHAT 4870 03:35:33,599 --> 03:35:35,167 PROMPTED US TO GO AHEAD AND 4871 03:35:35,167 --> 03:35:37,469 START TESTING IN COMMUNITIES. 4872 03:35:37,469 --> 03:35:43,475 AT THE END OF YEAR ONE AND 4873 03:35:43,475 --> 03:35:45,878 HEATHER AND I HAVE GRANTS THAT 4874 03:35:45,878 --> 03:35:47,546 FALL UNDER OUR INCLUDE PROJECT. 4875 03:35:47,546 --> 03:35:50,149 WE HAD OVERWHELMING SUPPORT FROM 4876 03:35:50,149 --> 03:35:52,151 OUR COMMUNITY AND THE DOWN 4877 03:35:52,151 --> 03:35:53,519 SYNDROME ALLIANCE IN THE 4878 03:35:53,519 --> 03:35:55,654 MIDLANDS IN THAT AREA AS WELL. 4879 03:35:55,654 --> 03:36:00,359 AND DESPITE THAT OVERWHELMING 4880 03:36:00,359 --> 03:36:01,627 SUCCESS WE CLEARLY WEREN'T 4881 03:36:01,627 --> 03:36:02,461 REPRESENTING EVERYBODY IN OUR 4882 03:36:02,461 --> 03:36:02,728 COMMUNITY. 4883 03:36:02,728 --> 03:36:03,762 THIS IS OUR SAMPLE. 4884 03:36:03,762 --> 03:36:06,765 YOU CAN SEE IT WAS LARGELY 4885 03:36:06,765 --> 03:36:09,602 WHITE, ENGLISH SPEAKING IN THE 4886 03:36:09,602 --> 03:36:12,137 HOME, MOTHERS WHO ARE HIGHLY 4887 03:36:12,137 --> 03:36:14,473 EDUCATED AND MOST LIVED IN AN 4888 03:36:14,473 --> 03:36:16,175 URBAN AREA WITH PRETTY GOOD 4889 03:36:16,175 --> 03:36:17,676 ACCESS TO HEARING HEALTH CARE. 4890 03:36:17,676 --> 03:36:20,145 THAT PROMPTED US TO START 4891 03:36:20,145 --> 03:36:22,948 THINKING ABOUT GOING INTO 4892 03:36:22,948 --> 03:36:23,248 COMMUNITIES. 4893 03:36:23,248 --> 03:36:25,250 WE HAD -- I'M GOING HAVE A SLIDE 4894 03:36:25,250 --> 03:36:27,820 IN A MINUTE THAT TALKS ABOUT THE 4895 03:36:27,820 --> 03:36:30,089 EVOLUTION OF THE RESEARCH AND 4896 03:36:30,089 --> 03:36:34,760 IT'S A 31-FOOT TRAILER WITH A 4897 03:36:34,760 --> 03:36:35,661 HOSPITAL-GRADE SOUNDING IN THE 4898 03:36:35,661 --> 03:36:38,364 BACK EVERYTHING YOU'D HAVE IN A 4899 03:36:38,364 --> 03:36:39,999 CLINICAL AUDIOLOGY SUITE. 4900 03:36:39,999 --> 03:36:42,468 IN FACT OUR CLINICAL 4901 03:36:42,468 --> 03:36:44,003 AUDIOLOGISTS USE IT TO GO TO 4902 03:36:44,003 --> 03:36:44,303 IOWA. 4903 03:36:44,303 --> 03:36:49,842 THEY HAVE A CONTRACT WITH A 4904 03:36:49,842 --> 03:36:57,282 GROUP IN IOWA AT A RESIDENTIAL 4905 03:36:57,282 --> 03:37:02,788 HOME AND NOW THEY TAKE THE RV TO 4906 03:37:02,788 --> 03:37:04,490 GLENWOOD, IOWA AND IT MEETS 4907 03:37:04,490 --> 03:37:06,625 THEIR REQUIREMENTS FOR CLINICAL 4908 03:37:06,625 --> 03:37:06,892 TESTING. 4909 03:37:06,892 --> 03:37:08,894 IT'S CLIMATE CONTROLLED AND HAS 4910 03:37:08,894 --> 03:37:11,730 SPACE FOR DOING OTHER 4911 03:37:11,730 --> 03:37:12,364 ASSESSMENTS AND A LITTLE BIT OF 4912 03:37:12,364 --> 03:37:22,608 WAITING AREA. 4913 03:37:53,338 --> 03:37:56,809 IT'S BEEN AMAZING AND WE STARTED 4914 03:37:56,809 --> 03:37:59,511 THINKING ABOUT IT IN 2020. 4915 03:37:59,511 --> 03:38:00,779 WE WERE INSPIRED. 4916 03:38:00,779 --> 03:38:08,087 I MET A SCIENTIST HERE FROM 4917 03:38:08,087 --> 03:38:14,293 ALABAMA WHO KNOWS MARCIA 4918 03:38:14,293 --> 03:38:16,729 McCKU 4919 03:38:16,729 --> 03:38:21,133 McCUTCHEN TO PROVIDE RESEARCH 4920 03:38:21,133 --> 03:38:21,867 AND CLINICAL SCREENINGS FOR 4921 03:38:21,867 --> 03:38:23,535 INDIVIDUALS IN THAT COMMUNITY. 4922 03:38:23,535 --> 03:38:25,437 IT'S A ONE OF THE POOREST 4923 03:38:25,437 --> 03:38:29,708 COMMUNITIES IN THE UNITED 4924 03:38:29,708 --> 03:38:30,142 STATES. 4925 03:38:30,142 --> 03:38:34,780 AND SHE AND I TALK A LOT. 4926 03:38:34,780 --> 03:38:35,748 SHE'S CANADIAN AND I'M CANADIAN 4927 03:38:35,748 --> 03:38:44,590 AND SEEMS TO BE ALL YOU NEED AND 4928 03:38:44,590 --> 03:38:45,858 BECAME FRIENDS AND GOT A 4929 03:38:45,858 --> 03:38:47,760 SUPPLEMENT TO HELP FUND THE 4930 03:38:47,760 --> 03:38:48,026 VEHICLE. 4931 03:38:48,026 --> 03:38:49,461 WE HAVE TERRIFIC INSTITUTIONAL 4932 03:38:49,461 --> 03:38:49,728 SUPPORT. 4933 03:38:49,728 --> 03:38:51,730 IT'S WELL WITHIN THEIR MISSION 4934 03:38:51,730 --> 03:38:51,964 AS WELL. 4935 03:38:51,964 --> 03:38:54,633 SO AGAIN HAPPY TO TALK ABOUT ALL 4936 03:38:54,633 --> 03:38:56,435 THOSE THINGS BUT WE GOT IT. 4937 03:38:56,435 --> 03:38:57,736 THE AIR CONDITIONER BROKE AFTER 4938 03:38:57,736 --> 03:38:59,671 THE FIRST SIX MONTHS AND WE GOT 4939 03:38:59,671 --> 03:39:06,945 THAT FIXED AN NOW WE LAUNCHED. 4940 03:39:06,945 --> 03:39:08,547 HE'S WHERE WE'VE BEEN AN WHERE 4941 03:39:08,547 --> 03:39:09,214 WE'RE GOING. 4942 03:39:09,214 --> 03:39:11,784 WE HAVEN'T BEEN TO DENVER BUT 4943 03:39:11,784 --> 03:39:13,852 HEATHER AND HER TEAM WILL BE 4944 03:39:13,852 --> 03:39:15,354 THERE TOMORROW. 4945 03:39:15,354 --> 03:39:18,924 THE RV IS LEAVING TONIGHT 4946 03:39:18,924 --> 03:39:20,159 PROVIDED THERE'S NO TORNADO 4947 03:39:20,159 --> 03:39:22,327 WHICH THERE MAY BE IN OMAHA AND 4948 03:39:22,327 --> 03:39:23,996 I'M NOT SUPPOSED TO TELL 4949 03:39:23,996 --> 03:39:24,296 HEATHER. 4950 03:39:24,296 --> 03:39:28,300 WE'VE BEEN TO TELL SITES IN 4951 03:39:28,300 --> 03:39:33,605 RURAL NEBRASKA, SOUTH DAKOTA, 4952 03:39:33,605 --> 03:39:36,175 THERE'S SITES IN FLORIDA AND WE 4953 03:39:36,175 --> 03:39:39,812 WERE ABLE TO GO THERE AND THOSE 4954 03:39:39,812 --> 03:39:41,547 CHILDREN LIVE ON CAMPUS IN BOYS 4955 03:39:41,547 --> 03:39:45,050 TOWN SO THEY'RE MEDICALLY, 4956 03:39:45,050 --> 03:39:46,885 SOCIALLY, EMOTIONALLY UNDER 4957 03:39:46,885 --> 03:39:50,589 SERVED CHILDREN AND THAT WAS 4958 03:39:50,589 --> 03:39:51,590 TREMENDOUS FOR US AND ALL 4959 03:39:51,590 --> 03:39:51,890 AROUND. 4960 03:39:51,890 --> 03:39:54,059 ALREADY THESE ARE COMMITMENTS 4961 03:39:54,059 --> 03:39:55,727 FOR NEXT YEAR. 4962 03:39:55,727 --> 03:39:57,863 WE'RE ALWAYS OPEN TO MORE. 4963 03:39:57,863 --> 03:39:59,031 IF YOU HAVE A SITE WHERE YOU 4964 03:39:59,031 --> 03:40:00,732 THINK THIS IS SOMETHING GOOD OR 4965 03:40:00,732 --> 03:40:04,269 WANT US TO COME DO HEARING 4966 03:40:04,269 --> 03:40:06,238 SCREENINGS AND NOT NECESSARILY 4967 03:40:06,238 --> 03:40:07,272 RESEARCH WE'RE USUALLY OPEN TO 4968 03:40:07,272 --> 03:40:13,912 IT DEPENDS ON TIME BUT WE'LL DO 4969 03:40:13,912 --> 03:40:16,048 A TOUR OF THE SOUTHERN UNITED 4970 03:40:16,048 --> 03:40:17,649 STATES EVERY JANUARY AND 4971 03:40:17,649 --> 03:40:20,152 FEBRUARY BECAUSE WE'D LIKE TO 4972 03:40:20,152 --> 03:40:21,753 NOT BE IN OMAHA THEN. 4973 03:40:21,753 --> 03:40:27,860 WE TALKED WITH IN ATLANTA AND 4974 03:40:27,860 --> 03:40:30,996 SOUTH CAROLINA AND MAY ADD THAT 4975 03:40:30,996 --> 03:40:32,965 AND HAPPY TO DO THAT. 4976 03:40:32,965 --> 03:40:36,168 THIS IS A QUICK SUMMARY OF THE 4977 03:40:36,168 --> 03:40:41,240 CHALLENGES AND GREAT THINGS TOO. 4978 03:40:41,240 --> 03:40:43,108 IT'S TOTALLY WORTH IT. 4979 03:40:43,108 --> 03:40:47,479 THERE'S A LOT OF THINGS THAT 4980 03:40:47,479 --> 03:40:48,947 HAVE TO GO IN TO PLANNING 4981 03:40:48,947 --> 03:40:50,382 INSTITUTIONAL SUPPORT AND YOU 4982 03:40:50,382 --> 03:40:53,185 NEED TO BE GOOD FRIENDS SO IF 4983 03:40:53,185 --> 03:40:54,753 YOU HAVE A MAINTENANCE AND I.T. 4984 03:40:54,753 --> 03:40:56,154 DEPARTMENT MATTERS AND 4985 03:40:56,154 --> 03:41:05,697 MARKETING. 4986 03:41:05,697 --> 03:41:06,965 SOMETIMES YOU HAVE TO SHOW UP 4987 03:41:06,965 --> 03:41:08,667 TWO, THREE TIMES AND ANNIE DID A 4988 03:41:08,667 --> 03:41:10,702 GREAT JOB AND OUR JOB IS TO 4989 03:41:10,702 --> 03:41:11,637 SUPPORT THE COMMUNITY. 4990 03:41:11,637 --> 03:41:14,973 WE GO IN THERE NOT NECESSARILY 4991 03:41:14,973 --> 03:41:17,209 EXPECTING WE'RE GOING RESEARCH. 4992 03:41:17,209 --> 03:41:18,944 PEOPLE ARE REALLY INTERESTED IN 4993 03:41:18,944 --> 03:41:20,345 RESEARCH WE FOUND. 4994 03:41:20,345 --> 03:41:22,481 I THINK FOR US IT'S SHOWING 4995 03:41:22,481 --> 03:41:24,149 CONSISTENTLY AGAIN I MENTIONED 4996 03:41:24,149 --> 03:41:26,018 I'M NOT AN EXPERT IN COMMUNITY 4997 03:41:26,018 --> 03:41:26,451 ENGAGEMENT. 4998 03:41:26,451 --> 03:41:28,153 I THINK MY PRIMARY STRENGTH IN 4999 03:41:28,153 --> 03:41:29,855 THE PROJECT IS LISTENING AND 5000 03:41:29,855 --> 03:41:31,690 TRYING TO MAKE SURE WE BRING IN 5001 03:41:31,690 --> 03:41:36,862 PEOPLE WHO DO HAVE THAT 5002 03:41:36,862 --> 03:41:47,372 EXPERTISE AND WE WERE AT WEST 5003 03:42:05,057 --> 03:42:10,696 PALM BEACH AT A GUATEMALAN MIAN 5004 03:42:10,696 --> 03:42:10,963 LANGUAGE. 5005 03:42:10,963 --> 03:42:13,098 I'M NOT BILINGUAL. 5006 03:42:13,098 --> 03:42:14,700 I DON'T SPEAK SPANISH BUT MY 5007 03:42:14,700 --> 03:42:17,069 TEAM WAS SO I HANDED OUT PENS 5008 03:42:17,069 --> 03:42:19,071 WAS MY JOB ON THIS PART OF THE 5009 03:42:19,071 --> 03:42:19,271 TRIP. 5010 03:42:19,271 --> 03:42:23,175 I PUT HERE THIS IS A CAMPUS IN 5011 03:42:23,175 --> 03:42:25,677 ORLANDO AND THERE'S AN ALLIGATOR 5012 03:42:25,677 --> 03:42:35,787 HERE. 5013 03:42:37,055 --> 03:42:37,456 THANK YOU VERY MUCH. 5014 03:42:37,456 --> 03:42:38,824 I APPRECIATE IT. 5015 03:42:38,824 --> 03:42:41,493 >> FANTASTIC. 5016 03:42:41,493 --> 03:42:42,260 THANK YOU SO MUCH. 5017 03:42:42,260 --> 03:42:46,565 OUR LAST TWO SPEAKERS ARE 5018 03:42:46,565 --> 03:42:54,239 DR. ERIC RUBENSTEIN IN 5019 03:42:54,239 --> 03:42:55,474 EPIDEMIOLOGY AT BOSTON 5020 03:42:55,474 --> 03:43:01,013 UNIVERSITY AND A CORE 5021 03:43:01,013 --> 03:43:04,016 RESEARCHER AND A DANCER, ARTIST, 5022 03:43:04,016 --> 03:43:08,153 ATHLETE AND WE WILL HEAR FROM 5023 03:43:08,153 --> 03:43:18,397 BOTH OF THEM. 5024 03:43:29,374 --> 03:43:31,476 >> WE'RE PRESENTING TO TALK 5025 03:43:31,476 --> 03:43:33,578 ABOUT OUR RESEARCH TEAM AT 5026 03:43:33,578 --> 03:43:34,246 BOSTON UNIVERSITY TO CALL DOWN 5027 03:43:34,246 --> 03:43:41,253 SYNDROME BY THE EXPERTS. 5028 03:43:41,253 --> 03:43:45,824 I'LL START BY INTRODUCING MYSELF 5029 03:43:45,824 --> 03:43:46,958 I'M AT BOSTON UNIVERSITY. 5030 03:43:46,958 --> 03:43:49,061 60% OF MY WORK TIME IS SCHEDULED 5031 03:43:49,061 --> 03:43:52,130 TO RESEARCH AND 50% OF THAT IS 5032 03:43:52,130 --> 03:43:58,103 DOWN SYNDROME RESEARCH AND THEN 5033 03:43:58,103 --> 03:44:00,172 ON THE PERSONAL SIDE SPECIAL 5034 03:44:00,172 --> 03:44:01,807 OLYMPIC COACHING. 5035 03:44:01,807 --> 03:44:04,176 I'M TWO AND A HALF HOURS A DAY 5036 03:44:04,176 --> 03:44:07,612 THINKING ABOUT DOWN SYNDROME. 5037 03:44:07,612 --> 03:44:09,147 WHERE SOMEONE LIKE GOOSE A GIANT 5038 03:44:09,147 --> 03:44:14,486 EMPLOYEE I DIDN'T REALIZE UNTIL 5039 03:44:14,486 --> 03:44:22,694 LOOKING NOW SHE MAKES A GIANT 5040 03:44:22,694 --> 03:44:24,963 PRESENCE AND ATHLETIC AND DAERNS 5041 03:44:24,963 --> 03:44:28,066 ARTIST AND HAS DN ALL THE TIME. 5042 03:44:28,066 --> 03:44:32,170 I'LL LET HER INTRODUCE HERSELF 5043 03:44:32,170 --> 03:44:42,681 MORE FULL FLIP -- MORE FULLY. 5044 03:44:44,249 --> 03:44:47,719 I WANT TO TELL YOU LEEBLT ABOUT 5045 03:44:47,719 --> 03:44:47,886 ME. 5046 03:44:47,886 --> 03:44:50,422 >> I LIVE IN MARYLAND WITH MY 5047 03:44:50,422 --> 03:44:54,659 SISTER ANNA AND BROTHER-IN-LAW 5048 03:44:54,659 --> 03:44:56,161 JEFF AND TWO NEPHEWS CADEN AND 5049 03:44:56,161 --> 03:44:58,230 BRADEN. 5050 03:44:58,230 --> 03:45:04,603 I WORK AS A BAGGER AT GIANT. 5051 03:45:04,603 --> 03:45:10,609 IT'S A GROCERY STORE. 5052 03:45:10,609 --> 03:45:14,012 A FUN FACT ABOUT ME IS I USED IT 5053 03:45:14,012 --> 03:45:19,317 PLAY BASKETBALL FOR SPECIAL 5054 03:45:19,317 --> 03:45:24,589 OLYMPICS AND USE ALSO GO 5055 03:45:24,589 --> 03:45:26,458 BOWLING MONDAY NIGHTS AND LIKE 5056 03:45:26,458 --> 03:45:29,794 TO WATCH THE BACHELORETTE. 5057 03:45:29,794 --> 03:45:35,901 IT'S ONE OF MY FAVORITE SHOWS. 5058 03:45:35,901 --> 03:45:38,470 >> WE BOTH ARE OUR EXPERTISE IN 5059 03:45:38,470 --> 03:45:40,172 DOWN SYNDROME AND GOOSE AND I 5060 03:45:40,172 --> 03:45:41,740 BRING DIFFERENT PERSPECTIVES. 5061 03:45:41,740 --> 03:45:43,308 WHO KNOWS MORE ABOUT DOWN 5062 03:45:43,308 --> 03:45:44,009 SYNDROME. 5063 03:45:44,009 --> 03:45:48,146 AND YOU KNOW, IT'S A LITTLE 5064 03:45:48,146 --> 03:45:49,814 SIMPLISTIC TO SAY IT'S LIKE 5065 03:45:49,814 --> 03:45:51,683 YOU'RE DOCTOR DOESN'T KNOW ABOUT 5066 03:45:51,683 --> 03:45:53,251 YOUR KIDNEY BECAUSE IT'S IN YOUR 5067 03:45:53,251 --> 03:45:55,820 BODY AND WE AS SCIENTISTS CAN NO 5068 03:45:55,820 --> 03:45:56,988 A LOT OF THINGS BUT I'LL NEVER 5069 03:45:56,988 --> 03:45:59,257 KNOW WHAT IT'S LIKE TO BE GOOSE 5070 03:45:59,257 --> 03:46:01,893 AND SHE'LL NEVER KNOW WHAT IT'S 5071 03:46:01,893 --> 03:46:04,062 LIKE TO BE ME AND NEED TO WORK 5072 03:46:04,062 --> 03:46:06,464 TOGETHER TO BRIDGE THE GAP. 5073 03:46:06,464 --> 03:46:07,866 WHO KNOWS MORE? 5074 03:46:07,866 --> 03:46:09,601 GOOSE IS THE EXPERT. 5075 03:46:09,601 --> 03:46:10,302 GOOSE KNOWS EVERYTHING. 5076 03:46:10,302 --> 03:46:13,505 THAT GETS US TO THE POINT WE'RE 5077 03:46:13,505 --> 03:46:14,606 TRYING TO MAKE WITH OUR MODEL 5078 03:46:14,606 --> 03:46:16,174 AND WHAT WE DO IN OUR LAB AND 5079 03:46:16,174 --> 03:46:18,577 INCLUDE. 5080 03:46:18,577 --> 03:46:24,583 AS A SCIENTIFIC FIELD WE'RE 5081 03:46:24,583 --> 03:46:26,818 EVERY LOOKING THE FIELD OF DOWN 5082 03:46:26,818 --> 03:46:27,953 SYNDROME AND THEY HAVE THE LIVED 5083 03:46:27,953 --> 03:46:29,521 EXPERIENCE SPEAKING FOR US 5084 03:46:29,521 --> 03:46:30,922 WITHOUT DOWN SYNDROME WE DON'T 5085 03:46:30,922 --> 03:46:32,157 HAVE. 5086 03:46:32,157 --> 03:46:35,193 WE CAN'T HAVE. 5087 03:46:35,193 --> 03:46:38,330 WE HAVE THE EXPERTS AND KNOW 5088 03:46:38,330 --> 03:46:40,899 WHAT'S IMPORTANT TO OURSELVES 5089 03:46:40,899 --> 03:46:43,168 AND PEERS AND KNOW HOW TO 5090 03:46:43,168 --> 03:46:44,169 COMMUNICATE AND REACH OUT TO THE 5091 03:46:44,169 --> 03:46:46,137 COMMUNITY AND HOW DO WE GET 5092 03:46:46,137 --> 03:46:49,441 PEOPLE WITH DOWN SYNDROME TO 5093 03:46:49,441 --> 03:46:51,142 PARTICIPATE IN OUR RESEARCH. 5094 03:46:51,142 --> 03:46:52,277 THEY KNOW. 5095 03:46:52,277 --> 03:46:53,411 THEY'LL TELL US. 5096 03:46:53,411 --> 03:46:55,280 AND A LOT OF OUT OF THE BOX 5097 03:46:55,280 --> 03:47:00,151 THINKING AND SO MANY GOOD IDEAS 5098 03:47:00,151 --> 03:47:02,087 COME FROM THESE FOLKS. 5099 03:47:02,087 --> 03:47:03,955 ALSO AN ISSUE OF EQUITY AND WHY 5100 03:47:03,955 --> 03:47:05,924 WE NEED THEM ON RESEARCH TEAMS. 5101 03:47:05,924 --> 03:47:07,492 NOTHING ABOUT OUT WITHOUT US. 5102 03:47:07,492 --> 03:47:10,195 IF WE'RE DOING RESEARCH ON 5103 03:47:10,195 --> 03:47:11,062 PEOPLE WITH DOWN SYNDROME THEY 5104 03:47:11,062 --> 03:47:15,433 SHOULD HAVE A STAY ON WHAT IS 5105 03:47:15,433 --> 03:47:16,001 GOING ON. 5106 03:47:16,001 --> 03:47:18,403 WE REALIZE IN THE HISTORIC ABUSE 5107 03:47:18,403 --> 03:47:20,405 BOTH IN THE SCIENTIFIC IT 5108 03:47:20,405 --> 03:47:25,810 RESEARCH WORLD AND IN TERMS OF 5109 03:47:25,810 --> 03:47:28,146 THE STRUCTURES THAT MAKE UP THE 5110 03:47:28,146 --> 03:47:29,681 COUNTRIES AND THERE'S INEQUITIES 5111 03:47:29,681 --> 03:47:31,516 AND ABLISM AT THE BASE OF OUR 5112 03:47:31,516 --> 03:47:33,084 CULTURE AND WE NEED TO COMBAT 5113 03:47:33,084 --> 03:47:35,120 THAT AND PART IS BEING AS 5114 03:47:35,120 --> 03:47:43,328 INCLUSIVE EVERYWHERE AS WE CAN. 5115 03:47:43,328 --> 03:47:45,864 AND A LOT OF US HERE ARE MAKING 5116 03:47:45,864 --> 03:47:47,999 A LIVING BY TAKING MONEY FROM 5117 03:47:47,999 --> 03:47:49,567 THE NIH. 5118 03:47:49,567 --> 03:47:50,835 WHY CAN'T PEOPLE WITH DOWN 5119 03:47:50,835 --> 03:47:53,004 SYNDROME WORK THAT WAY AND GET 5120 03:47:53,004 --> 03:47:55,540 THAT RESEARCH MONEY? 5121 03:47:55,540 --> 03:47:58,443 WE HAVE AN ROE 1 FROM INCLUDE TO 5122 03:47:58,443 --> 03:48:01,079 LOOK AT ALL MEDICARE AND 5123 03:48:01,079 --> 03:48:04,149 MEDICAID DATA AND BORROWED THE 5124 03:48:04,149 --> 03:48:06,051 PHRASE FROM MARTIN LUTHER KING 5125 03:48:06,051 --> 03:48:07,185 WHO PROBABLY DIDN'T SAY THIS BUT 5126 03:48:07,185 --> 03:48:08,920 A BUDGET IS A MORAL DOCUMENT. 5127 03:48:08,920 --> 03:48:11,122 WE MADE SURE TO SET ASIDE THE 5128 03:48:11,122 --> 03:48:13,325 RESOURCES FOR WHAT WE THOUGHT 5129 03:48:13,325 --> 03:48:15,894 WAS RIGHT WAS INCLUSIVE, 5130 03:48:15,894 --> 03:48:16,594 CO-EQUITABLE RESEARCH. 5131 03:48:16,594 --> 03:48:19,030 IN OUR ORIGINAL GRANT WE SAID 5132 03:48:19,030 --> 03:48:21,132 WE'D DO AN ADVISORY BOARD. 5133 03:48:21,132 --> 03:48:22,734 WHEN WE STARTED TO PUT THAT 5134 03:48:22,734 --> 03:48:25,403 TOGETHER WE REALIZED THE 5135 03:48:25,403 --> 03:48:25,704 LIMITATIONS. 5136 03:48:25,704 --> 03:48:28,139 THERE ARE SOME REAL STRENGTHS TO 5137 03:48:28,139 --> 03:48:29,808 AN ADVISORY BOARD AND THEY CAN 5138 03:48:29,808 --> 03:48:32,510 ADVISE YOU ON THE RESEARCH 5139 03:48:32,510 --> 03:48:34,679 YOU'RE DOING BUT THE FLIP SIDE 5140 03:48:34,679 --> 03:48:37,215 OF THAT PLAY BE MORE BENEFICIAL 5141 03:48:37,215 --> 03:48:39,217 FOR TO US ADVISE THE PEOPLE WITH 5142 03:48:39,217 --> 03:48:40,151 DOWN SYNDROME ON THE RESEARCH 5143 03:48:40,151 --> 03:48:50,428 THEY WANT TO DO. 5144 03:48:55,333 --> 03:49:00,138 ALSO IT'S SOMETIMES NICE TO HAVE 5145 03:49:00,138 --> 03:49:05,877 A GROUP PEERS WITH DOWN 5146 03:49:05,877 --> 03:49:15,787 SYNDROME AND WE'RE FACILITATING. 5147 03:49:15,787 --> 03:49:17,288 WE HAVE INDIVIDUALS PARTICIPATE 5148 03:49:17,288 --> 03:49:18,923 IN ALL STAGES OF THE RESEARCH. 5149 03:49:18,923 --> 03:49:20,759 ORIGINALLY I WAS LIKE DON'T YOU 5150 03:49:20,759 --> 03:49:24,162 WANT TO USE MY GREAT INNOVATIVE 5151 03:49:24,162 --> 03:49:26,898 MEDICAID AND MEDICARE DATA SET 5152 03:49:26,898 --> 03:49:29,734 AND THEY'RE LIKE, NO, THAT'S NOT 5153 03:49:29,734 --> 03:49:30,869 COOL AT ALL. 5154 03:49:30,869 --> 03:49:32,971 WE WANT TO ASK ABOUT MENTAL 5155 03:49:32,971 --> 03:49:34,439 HEALTH CARE AND STRATEGIES FOR 5156 03:49:34,439 --> 03:49:36,808 COPING AND MY DATA DON'T HAVE 5157 03:49:36,808 --> 03:49:37,108 THAT. 5158 03:49:37,108 --> 03:49:39,110 WE DID WHAT THEY WANTED TO DO 5159 03:49:39,110 --> 03:49:41,012 AND IT WAS EXTREMELY SUCCESSFUL. 5160 03:49:41,012 --> 03:49:44,516 IT'S A NEWISH APPROACH ROOTED IN 5161 03:49:44,516 --> 03:49:45,650 OCCUPATIONAL THERAPY. 5162 03:49:45,650 --> 03:49:48,653 THAT'S WHO WE BORROW A LOT FROM 5163 03:49:48,653 --> 03:49:52,757 AND UW MADISON AND UNIVERSITY OF 5164 03:49:52,757 --> 03:49:54,058 FLORIDA AND OTHERS AND WE 5165 03:49:54,058 --> 03:49:57,295 STARTED WITH A SMALL PILOT IN 5166 03:49:57,295 --> 03:50:01,933 MASSACHUSETTS AND GOOSE WAS OUR 5167 03:50:01,933 --> 03:50:11,543 FIRST CO-RESEARCH ER AND WILL 5168 03:50:11,543 --> 03:50:14,212 TALK TO US ABOUT HER SUMMER 5169 03:50:14,212 --> 03:50:16,381 INTERNSHIPS SHE DOES EVERY YEAR. 5170 03:50:16,381 --> 03:50:20,652 >> I WANTED TO TELL YOU I SPEND 5171 03:50:20,652 --> 03:50:29,861 MY SUMMER IN BOSTON AND I DID -- 5172 03:50:29,861 --> 03:50:40,371 HAD MY TWO NEPHEWS AND I MET 5173 03:50:44,342 --> 03:50:51,182 ERIC RUBENSTEIN AND I WORK ON 5174 03:50:51,182 --> 03:50:53,885 DIFFERENT PROJECTS ON MY 5175 03:50:53,885 --> 03:50:54,185 INTERNSHIP. 5176 03:50:54,185 --> 03:51:04,162 MY FIRST PROJECT WAS ABOUT BEING 5177 03:51:04,162 --> 03:51:09,234 HEALTHY. 5178 03:51:09,234 --> 03:51:17,642 I SHARED MY MESSAGE. 5179 03:51:17,642 --> 03:51:26,584 MY SECOND PROJECT WAS BEFORE 5180 03:51:26,584 --> 03:51:30,154 MENTAL HEALTH ABOUT HOW STUDENTS 5181 03:51:30,154 --> 03:51:32,457 NEED TO TAKE CARE OF THEIR 5182 03:51:32,457 --> 03:51:39,964 MENTAL HEALTH. 5183 03:51:39,964 --> 03:51:45,737 I DID INTERVIEWS AND ASKED 5184 03:51:45,737 --> 03:51:46,037 QUESTIONS. 5185 03:51:46,037 --> 03:51:49,374 THEN I DID A PROJECT. 5186 03:51:49,374 --> 03:51:52,043 >> YOU CAN'T POSSIBLY READ IT'S 5187 03:51:52,043 --> 03:51:54,479 OUR LOGIC MODEL FOR THE PROGRAM 5188 03:51:54,479 --> 03:51:57,048 WE'RE WORKING ON AN IN-HOUSE 5189 03:51:57,048 --> 03:51:58,316 EVALUATION AT THE MOMENT BUT OUR 5190 03:51:58,316 --> 03:52:01,719 GOAL AT THEN OF THE DAY IS 5191 03:52:01,719 --> 03:52:04,756 PERSONS WITH IDD, DOWN SYNDROME 5192 03:52:04,756 --> 03:52:06,424 SPECIFICALLY WILL MEANINGFULLY 5193 03:52:06,424 --> 03:52:07,425 ENGAGE AND CONTRIBUTE TO 5194 03:52:07,425 --> 03:52:07,692 RESEARCH. 5195 03:52:07,692 --> 03:52:08,860 THAT'S OUR GOAL. 5196 03:52:08,860 --> 03:52:10,128 WE HAVE ALL THESE STEPS. 5197 03:52:10,128 --> 03:52:14,566 WE THOUGHT IT THROUGH AND WE'RE 5198 03:52:14,566 --> 03:52:15,934 WORKING TO CONTINUE. 5199 03:52:15,934 --> 03:52:18,069 THIS IS OUR TEAM. 5200 03:52:18,069 --> 03:52:20,071 SEVEN ADULTS WITH DOWN SYNDROME 5201 03:52:20,071 --> 03:52:21,639 ALL OVER THE COUNTRY. 5202 03:52:21,639 --> 03:52:23,074 THREE FROM CALIFORNIA AND GOOSE 5203 03:52:23,074 --> 03:52:27,612 SIN MARYLAND, STACY IS IN UTAH 5204 03:52:27,612 --> 03:52:29,747 AND CAIDA IS IN WISCONSIN. 5205 03:52:29,747 --> 03:52:32,150 WE MEET ON ZOOM BECAUSE WE'RE 5206 03:52:32,150 --> 03:52:36,854 REMOTE AND YOU'LL GET TO MEET A 5207 03:52:36,854 --> 03:52:40,825 LITTLE BIT OF THEM HERE ADDS -- 5208 03:52:40,825 --> 03:52:44,162 AS WE PUT TOGETHER A VIDEO OF 5209 03:52:44,162 --> 03:52:50,101 OUR GREATEST HITS. 5210 03:52:50,101 --> 03:52:53,504 >> I'M AN ADVOCATE, PUBLIC 5211 03:52:53,504 --> 03:52:58,776 SPEAKER, ACTRESS AND VALUED 5212 03:52:58,776 --> 03:52:59,043 EMPLOYEE. 5213 03:52:59,043 --> 03:53:03,014 >> 5214 03:53:03,014 --> 03:53:03,915 >> TO BE WHO YOU ARE AND DON'T 5215 03:53:03,915 --> 03:53:09,988 BE AFRAID TO OWN IT. 5216 03:53:09,988 --> 03:53:13,391 >> CO-RESEARCH SAY FORM OF 5217 03:53:13,391 --> 03:53:14,292 PARTICIPATORY RESEARCH WHERE 5218 03:53:14,292 --> 03:53:15,560 INDIVIDUALS WITH LIVED 5219 03:53:15,560 --> 03:53:17,962 EXPERIENCE IN A PARTICULAR FIELD 5220 03:53:17,962 --> 03:53:19,464 COLLABORATE AS EQUALS WITH 5221 03:53:19,464 --> 03:53:20,131 RESEARCHERS IN THE RESEARCH 5222 03:53:20,131 --> 03:53:30,274 PROCESS. 5223 03:53:37,081 --> 03:53:39,050 WE USE OUR KNOWLEDGE TO ANALYZE 5224 03:53:39,050 --> 03:53:40,151 DATA AND SHARE WHAT WE LEARN 5225 03:53:40,151 --> 03:53:50,361 WITH OTHERS. 5226 03:55:30,595 --> 03:55:31,763 >> THANK YOU. 5227 03:55:31,763 --> 03:55:36,167 SO THAT'S A LITTLE OVERVIEW OF 5228 03:55:36,167 --> 03:55:41,205 OUR WHOLE TEAM. 5229 03:55:41,205 --> 03:55:43,207 SO, WE'VE DONE TRAINING. 5230 03:55:43,207 --> 03:55:48,146 SO AS I MENTIONED WE USED A 5231 03:55:48,146 --> 03:55:50,615 CURRICULUM ADAPTED FOR OUR 5232 03:55:50,615 --> 03:55:50,882 PURPOSES. 5233 03:55:50,882 --> 03:55:53,985 THAT'S AN AVAILABLE RESOURCE I 5234 03:55:53,985 --> 03:55:55,720 THINK FROM A PCORI FUNDING OUT 5235 03:55:55,720 --> 03:55:57,822 THERE READY TO USE AND A 5236 03:55:57,822 --> 03:55:58,790 MENTIONED TO SOME FOLKS 5237 03:55:58,790 --> 03:56:01,092 YESTERDAY THERE'S A NEW ETHICS 5238 03:56:01,092 --> 03:56:02,360 TRAINING WHICH SORT OF IS 5239 03:56:02,360 --> 03:56:05,229 EQUIVALENT FOR CITY TRAINING FOR 5240 03:56:05,229 --> 03:56:08,166 PEOPLE WITH INTELLECTUAL 5241 03:56:08,166 --> 03:56:12,036 DEVELOPMENT DISORDERS DEVELOPED 5242 03:56:12,036 --> 03:56:16,174 BY ARIEL SCHWARTS AND KATIE 5243 03:56:16,174 --> 03:56:20,144 McDONALD AT SYRACUSE AND CALLED 5244 03:56:20,144 --> 03:56:23,414 RESEARCH ETHICS FOR ALL AND THE 5245 03:56:23,414 --> 03:56:26,617 IRB APPROVED THAT A PROXY FOR 5246 03:56:26,617 --> 03:56:28,152 CITY TRAINING AND OUR FOLKS ARE 5247 03:56:28,152 --> 03:56:29,520 NOW FULLY ON THE IRB. 5248 03:56:29,520 --> 03:56:34,325 SO GOOSE WILL TALK US THROUGH 5249 03:56:34,325 --> 03:56:36,260 OUR MENTAL HEALTH RESEARCH 5250 03:56:36,260 --> 03:56:36,861 PROJECT AND CURRENT INTERVIEW 5251 03:56:36,861 --> 03:56:47,004 PROJECT. 5252 03:56:50,908 --> 03:57:01,352 >> IN 2022 I JOINED THE TEAM. 5253 03:57:03,855 --> 03:57:07,792 WE HAVE PEOPLE ON THE RESEARCH 5254 03:57:07,792 --> 03:57:08,226 TEAM. 5255 03:57:08,226 --> 03:57:12,163 WE WORK TOGETHER ON RESEARCH 5256 03:57:12,163 --> 03:57:12,430 PROJECTS. 5257 03:57:12,430 --> 03:57:16,500 WE ASK RESEARCHERS QUESTIONS, 5258 03:57:16,500 --> 03:57:20,171 FIND ANSWERS AND SHARE WHAT WE 5259 03:57:20,171 --> 03:57:22,573 FIND IN OTHERS. 5260 03:57:22,573 --> 03:57:26,143 LAST YEAR OUR TEAM STUDIED 5261 03:57:26,143 --> 03:57:32,083 MENTAL HEALTH IN DOWN SYNDROME. 5262 03:57:32,083 --> 03:57:33,517 HOW DO PEOPLE WITH DOWN SYNDROME 5263 03:57:33,517 --> 03:57:34,151 TAKE CARE OF THEIR MENTAL 5264 03:57:34,151 --> 03:57:39,757 HEALTH? 5265 03:57:39,757 --> 03:57:42,193 WE MADE AN ONLINE SURVEY AND 5266 03:57:42,193 --> 03:57:47,732 ASKED PEOPLE QUESTION AGE, IF 5267 03:57:47,732 --> 03:57:54,171 THEY HAD A JOB IF THEY HAVE 5268 03:57:54,171 --> 03:57:57,408 STRESS AND ANXIETY AND WHAT 5269 03:57:57,408 --> 03:57:58,542 SKILLS THEY USE. 5270 03:57:58,542 --> 03:57:59,977 45 PEOPLE TOOK OUR SURVEY. 5271 03:57:59,977 --> 03:58:08,152 MORE THAN 80% OF THEM FELT 5272 03:58:08,152 --> 03:58:16,527 STR 5273 03:58:16,527 --> 03:58:20,131 STRESS, ALMOST 60% FELT ANXIETY 5274 03:58:20,131 --> 03:58:30,675 AND SAID THEY HAVE MENTAL HEALTH 5275 03:58:33,144 --> 03:58:40,651 ISSUES. 5276 03:58:40,651 --> 03:58:44,021 THIS YEAR WE ARE DOING AN 5277 03:58:44,021 --> 03:58:48,125 INTERVIEW TO LEARN ABOUT 5278 03:58:48,125 --> 03:58:58,369 INDEPENDENCE. 5279 03:59:02,173 --> 03:59:03,674 INDEPENDENCE MEANS HAVING A 5280 03:59:03,674 --> 03:59:08,145 VOICE AND MAKING DECISIONS ABOUT 5281 03:59:08,145 --> 03:59:10,648 MY LIFE. 5282 03:59:10,648 --> 03:59:14,652 I HAVE BEEN PRACTICING AND AM 5283 03:59:14,652 --> 03:59:15,920 LOOKING FORWARD TO LEARNING MORE 5284 03:59:15,920 --> 03:59:17,755 ABOUT INDEPENDENCE. 5285 03:59:17,755 --> 03:59:20,024 >> SO WE SHARED RESULTS FROM OUR 5286 03:59:20,024 --> 03:59:21,459 MENTAL HEALTH SURVEY CURRENTLY 5287 03:59:21,459 --> 03:59:23,861 UNDER REVIEW IN A PEER-REVIEWED 5288 03:59:23,861 --> 03:59:24,295 JOURNAL. 5289 03:59:24,295 --> 03:59:27,565 WE THINK IT'S REALLY COOL 5290 03:59:27,565 --> 03:59:29,300 BECAUSE TO OUR KNOWLEDGE I DON'T 5291 03:59:29,300 --> 03:59:32,036 THINK PEOPLE HAVE JUST ASKED 5292 03:59:32,036 --> 03:59:32,903 PEOPLE WITH DOWN SYNDROME TO 5293 03:59:32,903 --> 03:59:34,405 COMPLETE A SURVEY. 5294 03:59:34,405 --> 03:59:35,840 I MAY BE WRONG BUT I THINK WE'RE 5295 03:59:35,840 --> 03:59:37,875 THE FIRST TO HAVE PEOPLE WITH 5296 03:59:37,875 --> 03:59:39,143 DOWN SYNDROME ASK OTHER PEOPLE 5297 03:59:39,143 --> 03:59:40,177 WITH DOWN SYNDROME TO COMPLETE A 5298 03:59:40,177 --> 03:59:47,084 SURVEY. 5299 03:59:47,084 --> 03:59:49,487 A GOAL OF MINE IN THE LAST YEAR 5300 03:59:49,487 --> 03:59:52,156 IS TRY NOT TO ACCEPT TOO MANY 5301 03:59:52,156 --> 03:59:53,624 SPEAKING INVITATIONS THAT DON'T 5302 03:59:53,624 --> 03:59:57,795 ALSO INCLUDE A CO-RESEARCHER. 5303 03:59:57,795 --> 03:59:59,864 THEY HAVE AS MUCH EXPERTISE AND 5304 03:59:59,864 --> 04:00:00,865 THEY'RE FINDINGS ARE AS NOVEL AS 5305 04:00:00,865 --> 04:00:02,133 I HAVE. 5306 04:00:02,133 --> 04:00:03,567 WE'VE DONE A DOWN SYNDROME 5307 04:00:03,567 --> 04:00:07,138 WEBINAR AND DID THE ADULT SUMMIT 5308 04:00:07,138 --> 04:00:08,672 AND MASSACHUSETTS DOWN SYNDROME 5309 04:00:08,672 --> 04:00:11,375 CONGRESS AND A METHODS IN 5310 04:00:11,375 --> 04:00:13,110 EPIDEMIOLOGY FOR DEMENTIA 5311 04:00:13,110 --> 04:00:16,180 CONFERENCE AND A TON OF GUEST 5312 04:00:16,180 --> 04:00:19,650 LECTURERS. 5313 04:00:19,650 --> 04:00:22,486 SO WHAT'S NEXT FOR US BESIDES 5314 04:00:22,486 --> 04:00:24,155 THE INTERVIEW PROJECT WE'LL 5315 04:00:24,155 --> 04:00:26,190 START TALKING TO PEOPLE ABOUT 5316 04:00:26,190 --> 04:00:26,390 SOON? 5317 04:00:26,390 --> 04:00:29,160 I HOPE TO TURN IT INTO A TOOL 5318 04:00:29,160 --> 04:00:30,494 KIT TO GIVE TO FOLKS IN OTHER 5319 04:00:30,494 --> 04:00:33,297 LABS AND NOT HAVE US HAVE TO 5320 04:00:33,297 --> 04:00:34,165 REINVENT THE WHEEL EVERY TIME 5321 04:00:34,165 --> 04:00:36,033 SOMEONE WANTS TO INCORPORATE 5322 04:00:36,033 --> 04:00:37,401 PEOPLE WITH DOWN SYNDROME ON A 5323 04:00:37,401 --> 04:00:37,735 RESEARCH TEAM. 5324 04:00:37,735 --> 04:00:39,403 PART OF THAT IS THE COST. 5325 04:00:39,403 --> 04:00:41,806 SO WE'RE HOPING TO DESIGN A TOOL 5326 04:00:41,806 --> 04:00:44,141 KIT IF YOU WANT TO PAY EVERYONE 5327 04:00:44,141 --> 04:00:46,243 FAIR WAGES WOULD BE ABOUT 5328 04:00:46,243 --> 04:00:47,812 $10,000 PER YEAR. 5329 04:00:47,812 --> 04:00:50,247 WHEN YOU ACCOUNT FOR THE 5330 04:00:50,247 --> 04:00:51,916 RESEARCH ASSISTANT TIME IT TAKES 5331 04:00:51,916 --> 04:00:55,052 TO ORGANIZE WE THINK IS FAIRLY 5332 04:00:55,052 --> 04:00:56,153 MANAGEABLE AND PART OF THE IDEA 5333 04:00:56,153 --> 04:00:58,456 OF BUDGETS MATTERING. 5334 04:00:58,456 --> 04:01:01,859 AND WE THIS WILL WORK FOR MOST 5335 04:01:01,859 --> 04:01:03,427 TYPES OF INCLUDE INVESTIGATORS 5336 04:01:03,427 --> 04:01:04,161 OR INTELLECTUAL DISABILITY 5337 04:01:04,161 --> 04:01:05,996 RESEARCHERS. 5338 04:01:05,996 --> 04:01:08,566 THEY'RE SO MANY WAYS AND SO MANY 5339 04:01:08,566 --> 04:01:10,568 FIELDS THIS COMMUNITY AND 5340 04:01:10,568 --> 04:01:21,112 POPULATION CAN PROVIDE INSIGHTS. 5341 04:01:22,413 --> 04:01:25,950 >> I ENJOYED TO WHAT OTHER 5342 04:01:25,950 --> 04:01:28,619 PEOPLE HAVE TO SAY. 5343 04:01:28,619 --> 04:01:30,254 I LEARNED A LOT AND HOPE YOU 5344 04:01:30,254 --> 04:01:32,323 LIKE OUR TALK. 5345 04:01:32,323 --> 04:01:42,733 THANK YOU FOR LISTENING. 5346 04:02:02,820 --> 04:02:08,159 >> WE'LL GO RIGHT TO OUR WRAP UP 5347 04:02:08,159 --> 04:02:13,964 SESSION. 5348 04:02:13,964 --> 04:02:15,799 >> THIS HAS BEEN WONDERFUL. 5349 04:02:15,799 --> 04:02:17,668 IT'S A WONDERFUL SECTION AND YOU 5350 04:02:17,668 --> 04:02:22,640 GUYS DO AMAZING WORK BUT I'VE 5351 04:02:22,640 --> 04:02:26,076 NOTICED THAT WE'VE TALKED 5352 04:02:26,076 --> 04:02:26,911 PRIMARILY ABOUT INDIVIDUALS WITH 5353 04:02:26,911 --> 04:02:28,145 DOWN SYNDROME AND THEIR 5354 04:02:28,145 --> 04:02:29,747 FAMILIES. 5355 04:02:29,747 --> 04:02:35,019 IS IT REALLY THE DEFINITION OF 5356 04:02:35,019 --> 04:02:36,220 COMMUNITY OR A NARROWER DIVISION 5357 04:02:36,220 --> 04:02:38,322 OF COMMUNITY AND WHAT ABOUT A 5358 04:02:38,322 --> 04:02:40,991 LARGER DEFINITION OF COMMUNITY 5359 04:02:40,991 --> 04:02:42,726 THAT INCLUDES TEACHERS, OTHER 5360 04:02:42,726 --> 04:02:44,862 COMMUNITY MEMBERS, RELIGIOUS 5361 04:02:44,862 --> 04:02:47,965 LEADERS WHO ARE VERY IMPORTANT 5362 04:02:47,965 --> 04:02:51,969 IN MORE TRADITIONAL COMMUNITIES, 5363 04:02:51,969 --> 04:02:53,103 SOMEWHERE IN AFRICA OR THE 5364 04:02:53,103 --> 04:02:54,071 MIDDLE EAST. 5365 04:02:54,071 --> 04:02:57,341 ARE THE ROLES ARE DISTRIBUTED IN 5366 04:02:57,341 --> 04:02:59,743 A SLIGHTLY DIFFERENT WAY. 5367 04:02:59,743 --> 04:03:06,283 NUCLEAR FAMILY NOT REALLY SEN 5368 04:03:06,283 --> 04:03:07,284 TROOL COMMUNITY SUPPORT OF 5369 04:03:07,284 --> 04:03:09,720 PEOPLE WHO ARE SLIGHTLY 5370 04:03:09,720 --> 04:03:09,987 DIFFERENT. 5371 04:03:09,987 --> 04:03:11,655 ANY MODELS WE NEED TO DISCUSS OR 5372 04:03:11,655 --> 04:03:21,865 KNOW ABOUT? 5373 04:03:22,166 --> 04:03:24,635 >> THE COMMUNITY'S NOT A 5374 04:03:24,635 --> 04:03:25,202 MONOLITH. 5375 04:03:25,202 --> 04:03:26,737 IT'S GOING DEFEND ON WHAT 5376 04:03:26,737 --> 04:03:28,372 COMMUNITY YOU LIVE IN, WHAT 5377 04:03:28,372 --> 04:03:30,641 COMMUNITY YOU'RE WORKING WITH, 5378 04:03:30,641 --> 04:03:32,042 WHAT SORT OF RESOURCES THERE ARE 5379 04:03:32,042 --> 04:03:33,777 AND WHAT SORT OF COMMUNITY 5380 04:03:33,777 --> 04:03:35,579 ENGAGEMENT THERE IS. 5381 04:03:35,579 --> 04:03:37,715 SO IN PITTSBURGH WE HAVE 5382 04:03:37,715 --> 04:03:39,617 PEDIATRIC DOWN SYNDROME CENTER 5383 04:03:39,617 --> 04:03:41,318 AND ADULT DOWN SYNDROME CENTER 5384 04:03:41,318 --> 04:03:44,221 AND THOSE CARE PROVIDERS ARE 5385 04:03:44,221 --> 04:03:45,522 VERY INVOLVED IN THE COMMUNITY 5386 04:03:45,522 --> 04:03:47,992 AND ARE CONSIDERED COMMUNITY 5387 04:03:47,992 --> 04:03:48,392 MEMBERS. 5388 04:03:48,392 --> 04:03:49,693 THERE'S STATE COMMUNITIES IN 5389 04:03:49,693 --> 04:03:52,129 CERTAIN GROUPS OF INDIVIDUALS. 5390 04:03:52,129 --> 04:03:53,964 SO I THINK AGAIN IT'S VERY 5391 04:03:53,964 --> 04:03:55,966 IMPORTANT TO THINK ABOUT THE 5392 04:03:55,966 --> 04:03:57,368 COMMUNITY YOU'RE SERVING AND WHO 5393 04:03:57,368 --> 04:04:01,205 THEY CONSIDER PART OF THAT 5394 04:04:01,205 --> 04:04:01,472 COMMUNITY. 5395 04:04:01,472 --> 04:04:03,474 AND SO TALKING -- IT ALL GOES 5396 04:04:03,474 --> 04:04:06,043 BACK TO TALKING TO THESE 5397 04:04:06,043 --> 04:04:08,445 INDIVIDUALS AND SAYING WHERE DO 5398 04:04:08,445 --> 04:04:10,581 YOU GET YOUR CARE AND SUPPORT 5399 04:04:10,581 --> 04:04:12,716 AND WHO IS PROVIDING RESOURCES 5400 04:04:12,716 --> 04:04:15,286 TO YOU AND THAT LOOKS EVEN 5401 04:04:15,286 --> 04:04:16,820 WITHIN THE PITTSBURGH CATCHMAN 5402 04:04:16,820 --> 04:04:17,254 AREA. 5403 04:04:17,254 --> 04:04:18,722 IT'S DIFFERENT IN DIFFERENT 5404 04:04:18,722 --> 04:04:23,927 PARTS OF THE CITY. 5405 04:04:23,927 --> 04:04:25,929 IT'S A LOT OF TIME TO IDENTIFY 5406 04:04:25,929 --> 04:04:26,764 THESE FOLKS AND FOREIGN HAVE A 5407 04:04:26,764 --> 04:04:35,105 FULL SENSE OF COMMUNITY. 5408 04:04:35,105 --> 04:04:41,912 >> IN THE FIELD OF CHILDREN WHO 5409 04:04:41,912 --> 04:04:43,747 ARE DEAF AND HARD OF HEARING, 5410 04:04:43,747 --> 04:04:49,119 PEOPLE ARE STARTING TO LOOK AT 5411 04:04:49,119 --> 04:04:51,422 COMMUNITIES AND SYSTEMS. 5412 04:04:51,422 --> 04:04:53,123 WE WERE TALKING YESTERDAY IN THE 5413 04:04:53,123 --> 04:04:54,558 BREAKOUT OF TRYING TO ENCOURAGE 5414 04:04:54,558 --> 04:04:55,993 SOME OF THE FOLKS WHO DO LOOK AT 5415 04:04:55,993 --> 04:04:57,561 THOSE DYNAMICS. 5416 04:04:57,561 --> 04:04:59,096 I COULDN'T AGREE MORE. 5417 04:04:59,096 --> 04:05:01,699 AND THE QUESTION IS HOW TO DO 5418 04:05:01,699 --> 04:05:03,500 THAT AND THERE'S PROBABLY PEOPLE 5419 04:05:03,500 --> 04:05:05,369 OUT THERE THAT WE SHOULD BE 5420 04:05:05,369 --> 04:05:08,172 BRINGING IN TO THE COMMUNITY TO 5421 04:05:08,172 --> 04:05:18,716 START LOOKING AT SOME OF THOSE. 5422 04:05:25,189 --> 04:05:27,691 >> I PUT IN A PLUG FOR THE 5423 04:05:27,691 --> 04:05:28,692 PARTICIPATORY RESEARCH SO WE 5424 04:05:28,692 --> 04:05:30,527 HAVE AN INITIATIVE FOR THAT. 5425 04:05:30,527 --> 04:05:31,695 THIS WOULD FIT RIGHT UP IN 5426 04:05:31,695 --> 04:05:41,772 THERE. 5427 04:05:41,772 --> 04:05:45,442 >> I'M FROM THE UNIVERSITY OF 5428 04:05:45,442 --> 04:05:45,709 COLORADO. 5429 04:05:45,709 --> 04:05:49,980 I HAD A DENSE DEEP QUESTION 5430 04:05:49,980 --> 04:05:53,584 ABOUT STATES GOING INTO THE 5431 04:05:53,584 --> 04:06:00,157 EVOLUTION OF A.I. BUT I'LL 5432 04:06:00,157 --> 04:06:02,826 E-MAIL AND GOOSE IF YOU WILL 5433 04:06:02,826 --> 04:06:05,963 ALLOW ME, I'M MONICA AND HAVE A 5434 04:06:05,963 --> 04:06:07,931 QUESTION FOR YOU ABOUT YOUR 5435 04:06:07,931 --> 04:06:10,634 INTERVIEWS. 5436 04:06:10,634 --> 04:06:12,903 I WOULD LIKE TO KNOW HOW DO YOU 5437 04:06:12,903 --> 04:06:23,380 PREPARE FOR YOUR INTERVIEWS. 5438 04:06:35,592 --> 04:06:37,961 >> YOU HAVE TO BRUSH YOUR HAIR, 5439 04:06:37,961 --> 04:06:43,934 BRUSH YOUR TEETH AND NICE 5440 04:06:43,934 --> 04:06:53,410 CLOTHES AND -- 5441 04:06:53,410 --> 04:06:55,412 >> AND WE SOMETIMES PRACTICE 5442 04:06:55,412 --> 04:06:55,646 BEFORE. 5443 04:06:55,646 --> 04:06:57,080 WHO DO WE PRACTICE WITH? 5444 04:06:57,080 --> 04:07:07,324 >> OH, ROBIN. 5445 04:07:20,671 --> 04:07:24,141 WE DO READING AND GOES FOR 5446 04:07:24,141 --> 04:07:25,709 WALKS. 5447 04:07:25,709 --> 04:07:36,086 SHE LISTENS TO MUSIC. 5448 04:07:48,098 --> 04:07:50,801 >> LET'S THINK OUR PANEL 5449 04:07:50,801 --> 04:07:52,503 PRESENTERS ONCE MORE AND HAND IT 5450 04:07:52,503 --> 04:08:02,613 OVER. 5451 04:08:04,314 --> 04:08:05,249 >> ALL RIGHT. 5452 04:08:05,249 --> 04:08:07,918 NOW WE'RE GOING TO MOVE INTO A 5453 04:08:07,918 --> 04:08:08,986 WRAP-UP WHERE WE'RE GOING TALK 5454 04:08:08,986 --> 04:08:10,921 ABOUT SOME SUMMARIES FROM THE 5455 04:08:10,921 --> 04:08:12,055 BREAKOUT SESSIONS. 5456 04:08:12,055 --> 04:08:15,058 JUST BEFORE THAT, I JUST WANTED 5457 04:08:15,058 --> 04:08:16,226 TO MENTION THAT IF YOU HAD A 5458 04:08:16,226 --> 04:08:17,661 QUESTION TODAY OR WANTED TO 5459 04:08:17,661 --> 04:08:19,596 REACH OUT TO ONE OF THE SPEAKERS 5460 04:08:19,596 --> 04:08:22,032 AND WASN'T SURE HOW TO DO THAT, 5461 04:08:22,032 --> 04:08:27,971 ON OUR FULL INVESTIGATORS' 5462 04:08:27,971 --> 04:08:30,007 MEETING WEBSITE WE HAVE BIOS 5463 04:08:30,007 --> 04:08:31,074 LISTED AND MORE INFORMATION 5464 04:08:31,074 --> 04:08:31,708 ABOUT THEM. 5465 04:08:31,708 --> 04:08:33,510 RUM CAN TRY TO CONNECT THAT WAY 5466 04:08:33,510 --> 04:08:39,149 AS WELL AFTER THE MEETING. 5467 04:08:39,149 --> 04:08:41,652 ALL RIGHT. 5468 04:08:41,652 --> 04:08:43,487 WE'RE GOING GET INTO THE 5469 04:08:43,487 --> 04:08:44,054 WRAP-UPS. 5470 04:08:44,054 --> 04:08:46,056 THESE ARE TOPICS WE COVERED. 5471 04:08:46,056 --> 04:08:48,225 WE KNOW WE DIDN'T HIT EVERY 5472 04:08:48,225 --> 04:08:49,626 POSSIBLE RESEARCH TOPIC BUT 5473 04:08:49,626 --> 04:08:50,894 WE'LL GET STARTED. 5474 04:08:50,894 --> 04:08:52,896 WE WANT TO THANK THE 5475 04:08:52,896 --> 04:08:53,897 INVESTIGATORS WHO LEAD THE 5476 04:08:53,897 --> 04:08:54,798 MEETINGS OR LED THE BREAKOUT 5477 04:08:54,798 --> 04:08:57,968 SESSIONS. 5478 04:08:57,968 --> 04:09:01,838 LET'S GET STARTED WITH OUR FIRST 5479 04:09:01,838 --> 04:09:04,675 NEURO DEVELOPMENTAL GROUP. 5480 04:09:04,675 --> 04:09:06,376 I WANT TO MENTION WE WANT TO TRY 5481 04:09:06,376 --> 04:09:12,082 TO KEEP THE SESSIONS TO FIVE 5482 04:09:12,082 --> 04:09:12,349 MINUTES. 5483 04:09:12,349 --> 04:09:14,818 SOME OF OUR GROUPS ARE GOING TO 5484 04:09:14,818 --> 04:09:16,153 PRESENT SLIDES BUT THEY'RE NOT 5485 04:09:16,153 --> 04:09:17,754 NECESSARY BUT TRY TO KEEP IT AT 5486 04:09:17,754 --> 04:09:19,189 THE FIVE-MINUTE MARK AND WANT TO 5487 04:09:19,189 --> 04:09:24,861 FOCUS ON CHALLENGES, GAPS IN THE 5488 04:09:24,861 --> 04:09:29,166 RESEARCH AND FUTURE DIRECTION IF 5489 04:09:29,166 --> 04:09:29,433 POSSIBLE. 5490 04:09:29,433 --> 04:09:34,571 LET'S BRING UP DR. LEIBOLD AND 5491 04:09:34,571 --> 04:09:44,915 DR. PATEL IF WE CAN. 5492 04:10:10,774 --> 04:10:14,678 >> THE NIH GROUP WILL TRY TO 5493 04:10:14,678 --> 04:10:15,445 CONSOLIDATE AND ANY WRITTEN 5494 04:10:15,445 --> 04:10:17,280 NOTES YOU HAVE WE'LL TRY TO PUT 5495 04:10:17,280 --> 04:10:19,249 THAT TOGETHER AND DISSEMINATE TO 5496 04:10:19,249 --> 04:10:20,884 THE GROUP SO DON'T WORRY ABOUT 5497 04:10:20,884 --> 04:10:31,228 COVERING EVERYTHING. 5498 04:10:37,200 --> 04:10:44,441 >> WE WERE -- I'LL DO THE FIRST 5499 04:10:44,441 --> 04:10:46,677 AND LINA DO THE SECOND. 5500 04:10:46,677 --> 04:10:48,945 WE WERE FOCUSSED ON SPEECH, 5501 04:10:48,945 --> 04:10:50,881 LANGUAGE AND HEARING AND SOME 5502 04:10:50,881 --> 04:10:53,650 BARRIERS THE GROUP IDENTIFIED 5503 04:10:53,650 --> 04:10:55,485 WAS PERHAPS A LACK OF 5504 04:10:55,485 --> 04:10:56,753 RECOGNITION OF THE IMPORTANCE OF 5505 04:10:56,753 --> 04:11:00,157 SPEECH, LANGUAGE AND HEARING IN 5506 04:11:00,157 --> 04:11:06,163 THE BROADER COMMUNITY. 5507 04:11:06,163 --> 04:11:08,165 THERE'S HIGH BARRIERS TO 5508 04:11:08,165 --> 04:11:09,566 INDEPENDENCE AND QUALITY OF 5509 04:11:09,566 --> 04:11:11,134 LIFE. 5510 04:11:11,134 --> 04:11:12,402 COMPLICATED TESTS NOT FEASIBLE 5511 04:11:12,402 --> 04:11:13,870 FOR USE WITH ALL INDIVIDUALS. 5512 04:11:13,870 --> 04:11:19,676 ONE SIZE DOESN'T FIT ALL. 5513 04:11:19,676 --> 04:11:23,814 WE THOUGHT ACCESSIBLE AND 5514 04:11:23,814 --> 04:11:26,083 FEASIBLE TESTS WERE NEEDED. 5515 04:11:26,083 --> 04:11:26,850 THERE'S NOT A LOT OF SCIENCE IN 5516 04:11:26,850 --> 04:11:33,890 THE AREA. 5517 04:11:33,890 --> 04:11:37,427 IS NOT AN INCLUSIVE OF EVERYONE 5518 04:11:37,427 --> 04:11:38,595 WITH DOWN SYNDROME AND THOSE 5519 04:11:38,595 --> 04:11:40,831 WITH THE LEAST ACCESS IN NEED 5520 04:11:40,831 --> 04:11:42,733 FOR THE MOST HELP ARE OFTEN NOT 5521 04:11:42,733 --> 04:11:44,201 INCLUDED OR INTEGRATED INTO 5522 04:11:44,201 --> 04:11:51,541 WORK. 5523 04:11:51,541 --> 04:11:54,177 WE OFTEN DON'T INCLUDE THE 5524 04:11:54,177 --> 04:11:59,649 PEOPLE WITH THE MOST COMPLICATED 5525 04:11:59,649 --> 04:12:00,050 HISTORIES. 5526 04:12:00,050 --> 04:12:03,353 ACCESSIBILITY GLOBALLY, 5527 04:12:03,353 --> 04:12:05,288 FEASIBILITY OF TESTS AND 5528 04:12:05,288 --> 04:12:06,456 RESOURCES IN TERMS OF EXPERTS IN 5529 04:12:06,456 --> 04:12:08,225 WHICH FIELD FOR THIS PARTICULAR 5530 04:12:08,225 --> 04:12:08,859 FIELD BECAUSE IT'S A LITTLE BIT 5531 04:12:08,859 --> 04:12:14,564 SMALLER. 5532 04:12:14,564 --> 04:12:15,966 REAL-WORLD OUTCOMES AND 5533 04:12:15,966 --> 04:12:17,534 ASSESSING A PERSON'S 5534 04:12:17,534 --> 04:12:18,835 SELF-DETERMINATION, WHAT THEY 5535 04:12:18,835 --> 04:12:19,369 WANT AND COMMUNICATION IS 5536 04:12:19,369 --> 04:12:26,076 CENTRAL TO THAT. 5537 04:12:26,076 --> 04:12:26,510 >> OKAY. 5538 04:12:26,510 --> 04:12:28,111 I'M GOING TO TRY TO READ THIS 5539 04:12:28,111 --> 04:12:30,180 WITH MY POOR VISION. 5540 04:12:30,180 --> 04:12:33,049 SO WHAT STRATEGIES WOULD ENHANCE 5541 04:12:33,049 --> 04:12:34,651 THE INTERDISCIPLINARY 5542 04:12:34,651 --> 04:12:35,886 COMMUNICATION AND COLLABORATION? 5543 04:12:35,886 --> 04:12:37,020 SPACE TO BRING PEOPLE TOGETHER. 5544 04:12:37,020 --> 04:12:39,723 IT HAS BEEN SUPER EXCITING TO BE 5545 04:12:39,723 --> 04:12:42,559 HERE AND TO HEAR THE DIFFERENT 5546 04:12:42,559 --> 04:12:44,895 PERSPECTIVES AND SOME OF THE 5547 04:12:44,895 --> 04:12:48,165 DIFFERENT BARRIERS WHEN WE'RE 5548 04:12:48,165 --> 04:12:50,500 THINKING ABOUT CULTURE AND WHERE 5549 04:12:50,500 --> 04:12:52,969 WE TALK ABOUT RESEARCH IN THE 5550 04:12:52,969 --> 04:12:55,806 UNITED STATES BUT EVEN HEARING 5551 04:12:55,806 --> 04:12:58,341 ABOUT BARRIERS TO EVEN JUST CARE 5552 04:12:58,341 --> 04:12:59,509 VERSUS RESEARCH IN OTHER PARTS 5553 04:12:59,509 --> 04:13:00,243 OF THE WORLD. 5554 04:13:00,243 --> 04:13:01,178 A WEDGE BETWEEN SCIENTISTS AND 5555 04:13:01,178 --> 04:13:07,017 CLINICIANS. 5556 04:13:07,017 --> 04:13:11,688 NEEDING THE CROSS COLLABORATION 5557 04:13:11,688 --> 04:13:12,789 MORE TO FIND WHAT CLINICIANS 5558 04:13:12,789 --> 04:13:14,858 FIND MORE AND WHAT EXPERTISE CAN 5559 04:13:14,858 --> 04:13:17,561 THEY BRING TO PROVIDE ADDITIONAL 5560 04:13:17,561 --> 04:13:17,794 SUPPORT. 5561 04:13:17,794 --> 04:13:20,831 WE TALKED ABOUT THAT DURING THE 5562 04:13:20,831 --> 04:13:22,532 BREAKOUT GROUP FOR COHORT 5563 04:13:22,532 --> 04:13:24,935 DEVELOPMENT TOO HOW CAN WE USE 5564 04:13:24,935 --> 04:13:25,702 CLINICIANS AS A RESOURCE FOR 5565 04:13:25,702 --> 04:13:26,670 BEING ABLE TO UNDERSTAND AND 5566 04:13:26,670 --> 04:13:31,508 CONNECT WITH FAMILIES. 5567 04:13:31,508 --> 04:13:33,476 ARE CONSIDERATION OF SPEECH AND 5568 04:13:33,476 --> 04:13:35,879 LANGUAGE OF COGNITION AND 5569 04:13:35,879 --> 04:13:36,179 LEARNING. 5570 04:13:36,179 --> 04:13:37,914 WE FELT LIKE THE NEURAL 5571 04:13:37,914 --> 04:13:39,316 DEVELOPMENT GROUPS SHOULD BE 5572 04:13:39,316 --> 04:13:41,718 TOGETHER BECAUSE LANGUAGE, 5573 04:13:41,718 --> 04:13:44,120 ADHERING AND COMMUNICATION 5574 04:13:44,120 --> 04:13:45,856 CROSSES BOTH ARENAS. 5575 04:13:45,856 --> 04:13:46,756 COGNITION AND EXECUTIVE FUNCTION 5576 04:13:46,756 --> 04:13:52,162 AND WE HAD A MORE INTENSE 5577 04:13:52,162 --> 04:13:56,132 DISCUSSION AROUND EVEN ACADEMIC 5578 04:13:56,132 --> 04:14:06,276 TESTING. 5579 04:14:08,011 --> 04:14:12,549 AND WE HAD SOME STRATEGIES -- WE 5580 04:14:12,549 --> 04:14:13,149 TALKED ABOUT THAT. 5581 04:14:13,149 --> 04:14:14,918 WE TALKED ABOUT NEW IT ATTORNEY 5582 04:14:14,918 --> 04:14:18,555 GENERALS IN A.I. 5583 04:14:18,555 --> 04:14:19,289 ESPECIALLY SPEECH RECOGNITION 5584 04:14:19,289 --> 04:14:24,160 PROGRAMS AND AAC AND HOW THOSE 5585 04:14:24,160 --> 04:14:26,830 MIGHT HELP COMMUNICATION. 5586 04:14:26,830 --> 04:14:28,498 PROBABLY A NEED TO BRING IN 5587 04:14:28,498 --> 04:14:32,135 EXPERTS WHO DO THAT WORK IN 5588 04:14:32,135 --> 04:14:35,205 OTHER POPULATIONS THAT MIGHT 5589 04:14:35,205 --> 04:14:36,806 HAVE COMMUNICATION OTHER 5590 04:14:36,806 --> 04:14:37,641 DISORDERS OF COMMUNICATION THAT 5591 04:14:37,641 --> 04:14:39,442 THERE ARE PEOPLE IN THOSE FIELDS 5592 04:14:39,442 --> 04:14:44,180 AND ENCOURAGING THEM TO GET 5593 04:14:44,180 --> 04:14:48,151 INVOLVED. 5594 04:14:48,151 --> 04:14:50,987 LOOK INTO EXISTING TOOLS AND 5595 04:14:50,987 --> 04:15:01,131 DEVICES. 5596 04:15:03,133 --> 04:15:13,043 >> FOR THE DATA CENTER AND I 5597 04:15:13,043 --> 04:15:15,211 WILL TELL YOU THAT THE DCC'S 5598 04:15:15,211 --> 04:15:17,580 REALLY OPEN TO FEEDBACK AND 5599 04:15:17,580 --> 04:15:18,381 THERE'S PLACES EVEN ON THE 5600 04:15:18,381 --> 04:15:20,050 WEBSITE WHEN YOU GO AND TRY TO 5601 04:15:20,050 --> 04:15:22,285 NAVIGATE IT IF YOU HAVE 5602 04:15:22,285 --> 04:15:24,187 QUESTIONS, THERE'S A QUICK 5603 04:15:24,187 --> 04:15:26,823 RESPONSE TURNAROUND FOR 5604 04:15:26,823 --> 04:15:31,528 QUESTIONS RELATED TO LIKE THIS 5605 04:15:31,528 --> 04:15:33,797 FEELS TO CUMBERSOME TO NAVIGATE 5606 04:15:33,797 --> 04:15:34,431 AND THOSE PERSPECTIVES ARE YEEL 5607 04:15:34,431 --> 04:15:37,367 IMPORTANT. 5608 04:15:37,367 --> 04:15:39,336 REALLY IMPORTANT AND FELT IT WAS 5609 04:15:39,336 --> 04:15:43,340 IMPORTANT TO LOOK AT THE CORE 5610 04:15:43,340 --> 04:15:44,341 DEVELOPMENTAL ASSESSMENT. 5611 04:15:44,341 --> 04:15:45,608 HAVING A BETTER INFORMATION OF 5612 04:15:45,608 --> 04:15:46,943 THE MEASURES AND TOOLS PEOPLE 5613 04:15:46,943 --> 04:15:48,878 ARE USING BUT THERE'S 5614 04:15:48,878 --> 04:15:49,579 RELIABILITY IN THE FIELD AS FAR 5615 04:15:49,579 --> 04:15:52,482 AS WHAT IS USED FOR 5616 04:15:52,482 --> 04:15:53,583 DEVELOPMENTAL ASSESSMENTS AND SO 5617 04:15:53,583 --> 04:15:55,618 BEING ABLE TO HARMONIZE THAT A 5618 04:15:55,618 --> 04:15:57,454 LITTLE BIT MORE AND THINK ABOUT 5619 04:15:57,454 --> 04:15:59,823 HOW A.I. COULD BE REALLY HELPFUL 5620 04:15:59,823 --> 04:16:02,292 IN CONSOLIDATING INFORMATION 5621 04:16:02,292 --> 04:16:12,635 THAT ALREADY EXISTS. 5622 04:16:13,103 --> 04:16:15,005 >> FINALLY CHALLENGES IN OUR 5623 04:16:15,005 --> 04:16:17,340 INSTITUTE FOR PROMOTING 5624 04:16:17,340 --> 04:16:18,908 INCLUSIVE STUDIES. 5625 04:16:18,908 --> 04:16:20,477 ONE OF THE CHALLENGES THAT CAME 5626 04:16:20,477 --> 04:16:23,580 UP IN OUR GROUP IS OUR FIELD 5627 04:16:23,580 --> 04:16:25,982 ITSELF IN TERMS OF RESEARCH OR 5628 04:16:25,982 --> 04:16:28,685 STUDENTS, TRAINEES IS NOT VERY 5629 04:16:28,685 --> 04:16:28,918 DIVERSE. 5630 04:16:28,918 --> 04:16:32,155 THIS IS A GLOBAL ISSUE IN THE 5631 04:16:32,155 --> 04:16:38,228 FIELD. 5632 04:16:38,228 --> 04:16:40,263 LOOKING AT OUTCOMES FOR 5633 04:16:40,263 --> 04:16:41,064 INDIVIDUALS LIVING WITH DOWN 5634 04:16:41,064 --> 04:16:44,200 SYNDROME IS A BIG CHALLENGE. 5635 04:16:44,200 --> 04:16:49,305 AND ECONOMIC BARRIERS. 5636 04:16:49,305 --> 04:16:51,007 I THINK THAT'S WHAT WE HAD. 5637 04:16:51,007 --> 04:16:57,714 THANK YOU. 5638 04:16:57,714 --> 04:17:00,150 >> THANK YOU FOR THAT. 5639 04:17:00,150 --> 04:17:03,420 OUR SECOND NEURAL DEVELOPMENT 5640 04:17:03,420 --> 04:17:08,158 GROUP FOCUS ON COGNITION, 5641 04:17:08,158 --> 04:17:18,501 REGRESSION AND ADHD. 5642 04:17:31,648 --> 04:17:32,816 >> OKAY. 5643 04:17:32,816 --> 04:17:34,417 WE HAD LIVELY CONVERSATION. 5644 04:17:34,417 --> 04:17:39,089 IN FACT WE HAD TO CUT SHORT SOME 5645 04:17:39,089 --> 04:17:41,791 OF THE CONVERSATION FOR THE 5646 04:17:41,791 --> 04:17:44,194 FIRST TWO QUESTIONS BUZ WE 5647 04:17:44,194 --> 04:17:46,663 THOUGHT WE COULD TAKE A WHOLE 5648 04:17:46,663 --> 04:17:51,034 HOUR WITH EACH BUT START WITH 5649 04:17:51,034 --> 04:17:53,770 BARRIERS TO ADVANCING 5650 04:17:53,770 --> 04:17:54,437 NEURODEVELOPMENT RESEARCH IN 5651 04:17:54,437 --> 04:17:56,139 DOWN SYNDROME AND TALKED ABOUT 5652 04:17:56,139 --> 04:18:00,510 THE NEED TO CONTINUE TO IDENTIFY 5653 04:18:00,510 --> 04:18:04,714 PSYCHO METRICALLY SOUND MEASURES 5654 04:18:04,714 --> 04:18:10,920 TO OF AND NOT JUST TO 5655 04:18:10,920 --> 04:18:12,388 CHARACTERIZE COHORTS FOR NATURAL 5656 04:18:12,388 --> 04:18:14,491 HISTORY REASONS BUT TO BE ABLE 5657 04:18:14,491 --> 04:18:16,392 TO CAPTURE WITH DEVELOPMENT 5658 04:18:16,392 --> 04:18:18,061 SENSITIVITY GAINS THAT MAY BE 5659 04:18:18,061 --> 04:18:27,737 MADE IN FUTURE CLINICAL TRIALS. 5660 04:18:27,737 --> 04:18:32,142 YOU CAN CONDUCT ASSET AND MOTOR 5661 04:18:32,142 --> 04:18:34,144 RELATED CHALLENGE AND MAKE SURE 5662 04:18:34,144 --> 04:18:35,311 OUR MEASURES ARE SYNDROME 5663 04:18:35,311 --> 04:18:40,383 INFORMED AS A HIGH PRIORITY. 5664 04:18:40,383 --> 04:18:42,785 WE ALSO TALKED ABOUT THE NEED 5665 04:18:42,785 --> 04:18:44,487 FOR UNDERSTANDING HETEROGENEITY 5666 04:18:44,487 --> 04:18:45,788 WITH GREATER RIGOR IN THE 5667 04:18:45,788 --> 04:18:46,089 POPULATION. 5668 04:18:46,089 --> 04:18:48,458 AND THAT THAT IS OF COURSE YOKED 5669 04:18:48,458 --> 04:18:51,461 IF WE WANT TO BE ABLE TO USE 5670 04:18:51,461 --> 04:18:52,495 MORE ADVANCED MIXTURE MODELS AND 5671 04:18:52,495 --> 04:18:55,999 OTHER KINDS OF APPROACHES THAT 5672 04:18:55,999 --> 04:18:59,435 WE NEED LARGER SAMPLES. 5673 04:18:59,435 --> 04:19:00,870 AND SO AS ALWAYS THE 5674 04:19:00,870 --> 04:19:02,572 IMPLICATIONS OF THIS POINT AND 5675 04:19:02,572 --> 04:19:04,107 THE DIRECTION OF NEEDING COHORTS 5676 04:19:04,107 --> 04:19:06,409 AND IT'S AN EXCITING MOMENT TO 5677 04:19:06,409 --> 04:19:09,679 BE BUILDING COHORTS AND 5678 04:19:09,679 --> 04:19:11,514 HARNESSING THOSE APPROACHES. 5679 04:19:11,514 --> 04:19:16,486 SOME OF THE THEMES AROUND BURDEN 5680 04:19:16,486 --> 04:19:18,655 FOR FAMILIES AS AN IMPORTANT 5681 04:19:18,655 --> 04:19:22,025 CONSIDERATION WHEN WE DESIGN 5682 04:19:22,025 --> 04:19:23,326 INTERVENTIONS AND PUT TOGETHER 5683 04:19:23,326 --> 04:19:24,227 BATTERIES FOR RESEARCH VISITS 5684 04:19:24,227 --> 04:19:30,833 WITH THE WHY'D IDEA WE WANT TO 5685 04:19:30,833 --> 04:19:32,702 REMOVE AS MANY BURDENS IN TERMS 5686 04:19:32,702 --> 04:19:37,407 OF RESOURCES THAT WE CAN FOR 5687 04:19:37,407 --> 04:19:38,408 FAMILIES TO ENCOURAGE 5688 04:19:38,408 --> 04:19:38,841 PARTICIPATION. 5689 04:19:38,841 --> 04:19:44,180 IN PARTICULAR WE TALKED ABOUT 5690 04:19:44,180 --> 04:19:45,114 INDIVIDUALS WITH DOWN SYNDROME 5691 04:19:45,114 --> 04:19:50,086 WHO HAVE BIOMEDICAL OR 5692 04:19:50,086 --> 04:19:50,720 NEURODEVELOPMENTAL COMPLEXITY 5693 04:19:50,720 --> 04:19:51,387 AND THEIR PARTICIPATION BECAUSE 5694 04:19:51,387 --> 04:19:55,158 OF THE BARRIERS AND THE 5695 04:19:55,158 --> 04:19:56,125 IMPORTANCE OF BEING CAUTIOUS IN 5696 04:19:56,125 --> 04:19:57,860 THE GENERALIZABILITY OF OUR 5697 04:19:57,860 --> 04:19:59,729 STUDIES WHEN WE'RE NOT 5698 04:19:59,729 --> 04:20:01,130 REPRESENTING A FULL RANGE OF 5699 04:20:01,130 --> 04:20:03,833 PRESENTATIONS IN THE POPULATION. 5700 04:20:03,833 --> 04:20:06,002 AND IN PARTICULAR TALKING ABOUT 5701 04:20:06,002 --> 04:20:08,137 SEVERE AND PROFOUND INTELLECTUAL 5702 04:20:08,137 --> 04:20:09,038 DISABILITY BEING UNDER 5703 04:20:09,038 --> 04:20:14,110 REPRESENTED IN OUR STUDIES BUT 5704 04:20:14,110 --> 04:20:16,179 BEING AN IMPORTANT DIMENSION 5705 04:20:16,179 --> 04:20:19,415 THAT IS OBSERVED IN 20% TO 30% 5706 04:20:19,415 --> 04:20:21,217 OF PEOPLE WITH DOWN SYNDROME AND 5707 04:20:21,217 --> 04:20:23,786 TALKED ABOUT THE OUTREACH AND 5708 04:20:23,786 --> 04:20:27,056 ENGAGEMENT THAT WOULD BE NEEDED 5709 04:20:27,056 --> 04:20:28,758 TO OBTAIN REPRESENTATIVE 5710 04:20:28,758 --> 04:20:28,992 SAMPLES. 5711 04:20:28,992 --> 04:20:30,326 THE PANEL THAT JUST WENT BEFORE 5712 04:20:30,326 --> 04:20:34,163 US WAS INSPIRING AND I HOPE THAT 5713 04:20:34,163 --> 04:20:35,732 WE CAN ADOPT MANY OF THOSE 5714 04:20:35,732 --> 04:20:37,867 APPROACHES. 5715 04:20:37,867 --> 04:20:39,035 IN TERMS OF ENHANCING 5716 04:20:39,035 --> 04:20:39,869 COLLABORATION QUICKLY. 5717 04:20:39,869 --> 04:20:43,406 WE TALKED ABOUT TWO TYPES OF 5718 04:20:43,406 --> 04:20:45,575 COLLABORATION AND COMMUNICATION 5719 04:20:45,575 --> 04:20:45,808 NEEDED. 5720 04:20:45,808 --> 04:20:47,410 COMMUNICATION WITHIN AND OUTSIDE 5721 04:20:47,410 --> 04:20:48,544 OF SUB FIELD. 5722 04:20:48,544 --> 04:20:50,947 WITHIN SUB FIELDS, CREATING MORE 5723 04:20:50,947 --> 04:20:54,083 OPPORTUNITIES FOR CHANNELS FOR 5724 04:20:54,083 --> 04:20:55,752 CROSS TALK AND SOMEBODY THOUGHT 5725 04:20:55,752 --> 04:20:59,322 OF A SLACK OR ANOTHER WAY FOR 5726 04:20:59,322 --> 04:21:02,025 RESEARCHERS ASKING SIMILAR OR 5727 04:21:02,025 --> 04:21:05,194 FACING SIMILAR KINDS OF ISSUES 5728 04:21:05,194 --> 04:21:07,330 THEY'RE TRYING TO PROBLEM SOLVE 5729 04:21:07,330 --> 04:21:10,566 OR BRAIN STORM WE CAN LEVERAGE 5730 04:21:10,566 --> 04:21:12,001 EACH OTHER'S WISDOM THROUGH 5731 04:21:12,001 --> 04:21:13,002 THOSE KINDS OF COMMUNICATIONS 5732 04:21:13,002 --> 04:21:16,673 BUT IN PARTICULAR WE TALKED 5733 04:21:16,673 --> 04:21:18,675 ABOUT COMMUNICATION ACROSS SUB 5734 04:21:18,675 --> 04:21:20,810 FIELDS AND THE NEED FOR ALL OF 5735 04:21:20,810 --> 04:21:21,477 US TO TRANSLATE THE MEANING OF 5736 04:21:21,477 --> 04:21:23,413 OUR FINDINGS TO ONE ANOTHER TO 5737 04:21:23,413 --> 04:21:25,348 BRIDGE COMMUNICATION TO REALLY 5738 04:21:25,348 --> 04:21:27,650 GET A FULL PICTURE OF THE WHOLE 5739 04:21:27,650 --> 04:21:29,752 PERSON AT SO MANY DIFFERENT 5740 04:21:29,752 --> 04:21:31,187 LEVELS OF INQUIRY. 5741 04:21:31,187 --> 04:21:34,157 AND THERE WAS SOME IDEAS AROUND 5742 04:21:34,157 --> 04:21:35,925 THE IDEA OF POTENTIALLY 5743 04:21:35,925 --> 04:21:39,329 REQUIRING AN NIH PROPOSALS, 5744 04:21:39,329 --> 04:21:41,731 LETTERS FROM OTHER NEIGHBORING 5745 04:21:41,731 --> 04:21:44,167 COLLEAGUES AND SUB FIELDS 5746 04:21:44,167 --> 04:21:46,402 ATTESTING TO THE TRANSLATIONAL 5747 04:21:46,402 --> 04:21:48,671 IMPORTANCE OF THE WORK BEING 5748 04:21:48,671 --> 04:21:49,672 DONE AND PERHAPS OPPORTUNITIES 5749 04:21:49,672 --> 04:21:51,107 FOR CROSS DISCIPLINARY TRAINING 5750 04:21:51,107 --> 04:21:53,543 SO WE CAN ALL BE EDUCATED LAY 5751 04:21:53,543 --> 04:21:55,411 PEOPLE IN EACH OTHER'S AREAS OF 5752 04:21:55,411 --> 04:21:57,780 EXPERTISE AND AN IDEA ABOUT 5753 04:21:57,780 --> 04:22:03,052 MATCH MAIM -- MATCH MAKING 5754 04:22:03,052 --> 04:22:06,889 THROUGH THE DCC AND I'LL TURN IT 5755 04:22:06,889 --> 04:22:07,223 OVER. 5756 04:22:07,223 --> 04:22:09,125 >> FOR PARADIGM SHIFTING WE 5757 04:22:09,125 --> 04:22:12,161 TALKED ABOUT WAYS WE COULD 5758 04:22:12,161 --> 04:22:13,996 CHANGE THE WAY WE SHARE DATA 5759 04:22:13,996 --> 04:22:14,864 WITH ONE ANOTHER. 5760 04:22:14,864 --> 04:22:20,169 OBVIOUSLY THE DCC COULD BE A 5761 04:22:20,169 --> 04:22:22,538 CENTRAL HUB FOR THAT. 5762 04:22:22,538 --> 04:22:23,806 AND TALKED ABOUT VALIDATION 5763 04:22:23,806 --> 04:22:24,407 MEASURES BETWEEN STUDIES AND 5764 04:22:24,407 --> 04:22:30,480 GROUPS. 5765 04:22:30,480 --> 04:22:32,749 AND LOOKED AT THE LARGE COHORT 5766 04:22:32,749 --> 04:22:34,016 INITIATIVE FROM INCLUDE IS 5767 04:22:34,016 --> 04:22:35,017 SOMETHING THAT'S LIKELY TO BE 5768 04:22:35,017 --> 04:22:40,456 PARADIGM SHIFTING. 5769 04:22:40,456 --> 04:22:43,593 A 5770 04:22:43,593 --> 04:22:45,161 >> WE TALKED ABOUT A PREVENTION 5771 04:22:45,161 --> 04:22:46,496 SCIENCE APPROACH WITH SOME OF 5772 04:22:46,496 --> 04:22:49,699 THE DISCOVERY GOING ON IN THE 5773 04:22:49,699 --> 04:22:51,567 MOLECULAR LEVEL THERE MAY BE 5774 04:22:51,567 --> 04:22:53,269 OPPORTUNITIES TO PREVENT CERTAIN 5775 04:22:53,269 --> 04:22:56,973 KINDS OF CASCADES THAT MAY 5776 04:22:56,973 --> 04:22:59,509 UNFOLD THROUGHOUT DEVELOPMENT IN 5777 04:22:59,509 --> 04:23:01,911 ANTICIPATORY WAYS AND CAN DO THE 5778 04:23:01,911 --> 04:23:04,380 SAME THING BY IDENTIFYING 5779 04:23:04,380 --> 04:23:07,617 TARGETS ON THE BEHAVIORAL SIDE 5780 04:23:07,617 --> 04:23:11,587 AND MANIFESTATIONS TO BE 5781 04:23:11,587 --> 04:23:12,722 ANTICIPATORY ABOUT IT. 5782 04:23:12,722 --> 04:23:15,992 >> AND THE COHORT STUDIES WOULD 5783 04:23:15,992 --> 04:23:18,995 BE INSTRUMENTAL TO UNDERSTAND 5784 04:23:18,995 --> 04:23:20,163 PARTICULAR INDIVIDUALS WHAT 5785 04:23:20,163 --> 04:23:22,031 BIOLOGICAL PROCESSES MIGHT BE 5786 04:23:22,031 --> 04:23:23,199 VERY IMPORTANT FOR THEM COMPARED 5787 04:23:23,199 --> 04:23:30,206 TO THE GENERAL POPULATION. 5788 04:23:30,206 --> 04:23:32,141 NEW TECHNOLOGIES, WE TALKED 5789 04:23:32,141 --> 04:23:35,311 ABOUT MACHINE LEARNING AND 5790 04:23:35,311 --> 04:23:37,613 ARTIFICIAL INTELLIGENCE TO 5791 04:23:37,613 --> 04:23:40,650 SCRAPE A.M.R. AND COLLECT OUR 5792 04:23:40,650 --> 04:23:47,723 DATA TO HELP US ALL DO OUR WORK 5793 04:23:47,723 --> 04:23:50,426 AND THE NEED TO TRAIN OURSELVES 5794 04:23:50,426 --> 04:23:52,261 AND OUR STAFF AND OUR COLLEAGUES 5795 04:23:52,261 --> 04:23:56,532 IN THESE METHODS OF ADVANCED 5796 04:23:56,532 --> 04:23:57,133 INTELLIGENCE GATHERING AND 5797 04:23:57,133 --> 04:24:07,376 MANIPULATION. 5798 04:24:13,382 --> 04:24:16,152 A COUPLE TIMES DCC CAME UP AS A 5799 04:24:16,152 --> 04:24:18,154 POTENTIAL INCUBATOR AND NOT ONLY 5800 04:24:18,154 --> 04:24:20,623 A TOOL TO CONSOLIDATE 5801 04:24:20,623 --> 04:24:23,259 INFORMATION BETWEEN STUDIES BUT 5802 04:24:23,259 --> 04:24:28,130 IN ANOTHER WAY OF GETTING US 5803 04:24:28,130 --> 04:24:29,932 TOGETHER MAYBE NOT PHYSICALLY 5804 04:24:29,932 --> 04:24:32,134 BUT IN TERMS OF MAKING 5805 04:24:32,134 --> 04:24:36,606 CONNECTIONS WITH RESEARCHERS 5806 04:24:36,606 --> 04:24:42,612 INTERESTED IN IDEAS. 5807 04:24:42,612 --> 04:24:44,747 WE RECOGNIZE THE CHALLENGES IN 5808 04:24:44,747 --> 04:24:47,416 PROMOTING INCLUSIVE CLINICAL 5809 04:24:47,416 --> 04:24:56,125 STUDIES AND DS CONNECT AND THE 5810 04:24:56,125 --> 04:25:02,665 OTHER LARGER FRAME PROGRAMS AND 5811 04:25:02,665 --> 04:25:05,368 THE LEVEL OF ACCESS TO DS 5812 04:25:05,368 --> 04:25:15,912 CONNECT WAS RAISED AS A CONCERN. 5813 04:25:23,085 --> 04:25:25,021 PONG WE ONLY WENT TWO MINUTES 5814 04:25:25,021 --> 04:25:26,689 AND 40 SECONDS OVER. 5815 04:25:26,689 --> 04:25:27,290 >> WE'LL MOVE ON TO THE NEXT 5816 04:25:27,290 --> 04:25:37,400 GROUP. 5817 04:25:47,977 --> 04:25:51,581 >> I THINK IVAN LEFT AND WILL DO 5818 04:25:51,581 --> 04:25:53,849 IT ON OUR OWN AND MAYBE MAKE UP 5819 04:25:53,849 --> 04:25:56,619 TIME AND WE THOUGHT WE WERE 5820 04:25:56,619 --> 04:25:57,553 DOING WELL UNTIL SOMEONE POINTED 5821 04:25:57,553 --> 04:25:59,422 OUT QUESTIONS ON THE OTHER SIDE 5822 04:25:59,422 --> 04:26:01,123 OF THE DOCUMENT AND THAT MADE US 5823 04:26:01,123 --> 04:26:03,960 AWARE WE MISSED QUITE A BIT. 5824 04:26:03,960 --> 04:26:06,662 I THINK IN TALKING ABOUT 5825 04:26:06,662 --> 04:26:07,930 BARRIERS THERE WERE TWO THINGS 5826 04:26:07,930 --> 04:26:09,799 THE GROUP HIGHLIGHTED. 5827 04:26:09,799 --> 04:26:11,500 BOTH FOR CANCER AND BIRTH 5828 04:26:11,500 --> 04:26:13,402 DEFECTS, OBVIOUSLY THESE ARE 5829 04:26:13,402 --> 04:26:23,879 PHENOTYPE DEVELOP EARLY IN THERE 5830 04:26:23,879 --> 04:26:27,583 WAS CONSENSUS THERE'S BEEN A 5831 04:26:27,583 --> 04:26:30,987 LACK OF BIRTH COHORTS TO FOLLOW 5832 04:26:30,987 --> 04:26:32,154 IN LIFE AND ANALYZE AND EVALUATE 5833 04:26:32,154 --> 04:26:34,957 WHAT PREDICTORS OF OUTCOMES MAY 5834 04:26:34,957 --> 04:26:35,524 LOOK LIKE. 5835 04:26:35,524 --> 04:26:38,260 ON THE FLIP SIZED THAT 5836 04:26:38,260 --> 04:26:40,796 ESPECIALLY FOR BIRTH DEFECTS THE 5837 04:26:40,796 --> 04:26:42,798 THOUGHT WAS THESE EVENTS HAPPEN 5838 04:26:42,798 --> 04:26:45,835 DURING DEVELOPMENT, OBVIOUSLY, 5839 04:26:45,835 --> 04:26:48,037 AND ARE PRESENT AT THE TIME OF 5840 04:26:48,037 --> 04:26:48,638 DELIVERY. 5841 04:26:48,638 --> 04:26:50,740 THERE NEEDS TO BE BETTER ANIMAL 5842 04:26:50,740 --> 04:26:51,774 MODELS FOR DOING THE WORK WHICH 5843 04:26:51,774 --> 04:26:52,441 WAS A REAL THEME THROUGHOUT THE 5844 04:26:52,441 --> 04:27:02,585 SESSION. 5845 04:27:04,020 --> 04:27:06,656 THERE'S THE BARRIER THAT WORK 5846 04:27:06,656 --> 04:27:08,157 HAS BEEN DONE IN MORE STRUCTURAL 5847 04:27:08,157 --> 04:27:10,660 BIRTH DEBTS BUT LACK OF STUDIES 5848 04:27:10,660 --> 04:27:13,663 IN OTHER -- DEFECTS BUT LACK OF 5849 04:27:13,663 --> 04:27:16,098 STUDIES IN OTHER CONDITIONS AND 5850 04:27:16,098 --> 04:27:20,903 IT WAS MENTIONED A COMMON 5851 04:27:20,903 --> 04:27:22,471 STRUCTURAL BIRTH DEFECT DISEASE 5852 04:27:22,471 --> 04:27:24,040 AND MORE WORK NEEDS TO BE DONE. 5853 04:27:24,040 --> 04:27:30,980 IN TERMS OF STRATEGIES TO 5854 04:27:30,980 --> 04:27:31,714 ENHANCE COMMUNICATION AND 5855 04:27:31,714 --> 04:27:33,716 COLLABORATION, THERE WAS 5856 04:27:33,716 --> 04:27:36,152 CONSENSUS IN THE ROOM THESE 5857 04:27:36,152 --> 04:27:40,556 INCLUDE MEETINGS PROVIDE A GREAT 5858 04:27:40,556 --> 04:27:46,495 OPPORTUNITY FOR BRINGING 5859 04:27:46,495 --> 04:27:47,129 INTERDISCIPLINARY RESEARCHERS 5860 04:27:47,129 --> 04:27:48,764 TOGETHER AND HEAR WHAT OTHERS 5861 04:27:48,764 --> 04:27:49,965 ARE DOING WITH OTHER PHENOTYPES. 5862 04:27:49,965 --> 04:27:52,468 WE ENCOURAGE THE NIH TO CONTINUE 5863 04:27:52,468 --> 04:27:57,773 TO SUPPORT THE INCLUDE MEETING. 5864 04:27:57,773 --> 04:28:04,046 ON THE FLIP SIDE THERE WAS A 5865 04:28:04,046 --> 04:28:07,416 DESIRE TO HAVE SMALLER BREAKOUTS 5866 04:28:07,416 --> 04:28:08,584 TO FOCUS ON SPECIFIC QUESTIONS 5867 04:28:08,584 --> 04:28:09,952 IS SOMETHING THAT CAME OUT. 5868 04:28:09,952 --> 04:28:11,654 IN TERMS OF STRATEGIES TO 5869 04:28:11,654 --> 04:28:13,856 ADVANCE THE FIELD, THERE WAS A 5870 04:28:13,856 --> 04:28:15,624 LOT OF CONVERSATION IN THE SPACE 5871 04:28:15,624 --> 04:28:20,996 AND ONE THEME I THOUGHT WAS 5872 04:28:20,996 --> 04:28:22,198 INTERESTING WAS PROMOTING GLOBAL 5873 04:28:22,198 --> 04:28:23,733 RESEARCH WOULD BE IMPORTANT AND 5874 04:28:23,733 --> 04:28:26,302 DAVID MENTIONED THIS IN THE 5875 04:28:26,302 --> 04:28:27,737 COHORT BREAKOUT SESSION AND OF 5876 04:28:27,737 --> 04:28:28,738 COURSE WE RECOGNIZE THE 5877 04:28:28,738 --> 04:28:31,607 CHALLENGES OF DOING THINGS ON A 5878 04:28:31,607 --> 04:28:33,042 NATIONAL LEVEL BUT THERE ARE 5879 04:28:33,042 --> 04:28:34,977 INSIGHTS THAT WE COULD LEARN 5880 04:28:34,977 --> 04:28:40,716 ABOUT BIRTH DEFECTS AND CANCER 5881 04:28:40,716 --> 04:28:44,687 FROM DIFFERENT POPULATIONS. 5882 04:28:44,687 --> 04:28:49,058 WE HAD A COLLABORATOR FROM 5883 04:28:49,058 --> 04:28:50,926 BOLIVIA TALK ABOUT INFORMING THE 5884 04:28:50,926 --> 04:28:52,061 INFORMATION OF THE MECHANISMS OF 5885 04:28:52,061 --> 04:28:52,361 CONDITIONS. 5886 04:28:52,361 --> 04:28:55,164 AND FINALLY, IN TERMS OF HOW THE 5887 04:28:55,164 --> 04:28:56,632 DATA COORDINATING CENTER CAN 5888 04:28:56,632 --> 04:28:58,334 SUPPORT EMERGING AREAS OF 5889 04:28:58,334 --> 04:29:04,140 RESEARCH, I THINK AGAIN I WANT 5890 04:29:04,140 --> 04:29:09,678 TO ACKNOWLEDGE WE THINK DCC IS 5891 04:29:09,678 --> 04:29:12,581 DOING AN AMAZING WORK BUT GOING 5892 04:29:12,581 --> 04:29:18,053 BACK TO HUMAN AN ANIMAL CELL 5893 04:29:18,053 --> 04:29:21,624 LINES COORDINATING ACCESS FOR 5894 04:29:21,624 --> 04:29:23,492 THOSE DOING WORK IN ANIMAL 5895 04:29:23,492 --> 04:29:29,732 MODELS AND BEING A TOUCH POINT 5896 04:29:29,732 --> 04:29:34,570 FOR ACCESSING NOVEL BIOLOGICAL 5897 04:29:34,570 --> 04:29:37,406 SAMPLES NOT PREVIOUSLY USED IN 5898 04:29:37,406 --> 04:29:39,575 THE CONTEXT OF DOWN SYNDROME. 5899 04:29:39,575 --> 04:29:40,876 THIS IS SOMETHING JOAQUIN AND 5900 04:29:40,876 --> 04:29:42,845 OTHERS ARE THINKING ABOUT BUT IN 5901 04:29:42,845 --> 04:29:47,349 TERMS OF OMICS, WE RECOGNIZE 5902 04:29:47,349 --> 04:29:48,651 GENOMICS HAVE TAKEN THE PRIORITY 5903 04:29:48,651 --> 04:29:50,386 OR AT LEAST MOST THE DATA THAT 5904 04:29:50,386 --> 04:29:51,921 HAVE BEEN GENERATED HAVE BEEN IN 5905 04:29:51,921 --> 04:29:53,622 THE CONTEXT OF GENOMICS. 5906 04:29:53,622 --> 04:29:55,758 WE NEED TO START MOVING BEYOND 5907 04:29:55,758 --> 04:29:58,761 THAT TO METABOLOMICS AND 5908 04:29:58,761 --> 04:30:00,129 METAGENOMICS IN RELATION TO THE 5909 04:30:00,129 --> 04:30:01,463 PHENOTYPES WE WERE INTERESTED IN 5910 04:30:01,463 --> 04:30:12,174 AND THE BIRTH DEFECTS OF CANCER. 5911 04:30:12,174 --> 04:30:13,642 WITH THAT I'LL WRAP IT UP AND 5912 04:30:13,642 --> 04:30:16,145 PASS IT TO THE NEXT GROUP. 5913 04:30:16,145 --> 04:30:24,053 >> NOW WE'LL MOVE ON TO IMMUNE 5914 04:30:24,053 --> 04:30:24,887 SYSTEM DYSREGULATION WITH 5915 04:30:24,887 --> 04:30:35,264 DR. JUAQUIN ESPINOSA. 5916 04:30:37,800 --> 04:30:40,603 >> WE HAD A GREAT MEETING. 5917 04:30:40,603 --> 04:30:44,874 WE LEVERAGED THE WORK OF OUR 5918 04:30:44,874 --> 04:30:46,675 WORK GROUP WE HAVE WITHIN DOWN 5919 04:30:46,675 --> 04:30:51,814 SYNDROME THE MEDICAL INTEREST 5920 04:30:51,814 --> 04:30:56,652 GROUP. 5921 04:30:56,652 --> 04:31:00,789 IN ANTICIPATION OF THIS WE HAD A 5922 04:31:00,789 --> 04:31:02,324 GROUP AND THESE ARE 5923 04:31:02,324 --> 04:31:02,691 RECOMMENDATIONS. 5924 04:31:02,691 --> 04:31:12,167 IN TERMS OF BARRIERS, AND BROAD 5925 04:31:12,167 --> 04:31:13,435 IMPACTS OF IMMUNE DYSREGULATION 5926 04:31:13,435 --> 04:31:15,304 AND MULTIPLE ASPECTS OF BIOLOGY 5927 04:31:15,304 --> 04:31:17,006 AND THE NEW SYSTEM IS EVERYWHERE 5928 04:31:17,006 --> 04:31:20,175 IN YOUR BODY AND NOT JUST IN THE 5929 04:31:20,175 --> 04:31:30,286 BLOOD. 5930 04:31:31,420 --> 04:31:35,891 THERE'S CAUSES FOR THE LANDSCAPE 5931 04:31:35,891 --> 04:31:40,062 BEYOND NIAID IN LOOKING FOR 5932 04:31:40,062 --> 04:31:45,234 NIDDK AND OTHER INSTITUTES 5933 04:31:45,234 --> 04:31:47,536 APPRECIATE THE IMMUNE 5934 04:31:47,536 --> 04:31:55,110 DYSREGULATION THAT HAVE EFFECTS. 5935 04:31:55,110 --> 04:32:03,218 AND SPECIMENS AND SOME OTHER 5936 04:32:03,218 --> 04:32:07,323 GROUP AND MORE THAN JUST LAWS 5937 04:32:07,323 --> 04:32:10,059 AND GOOD CLINICAL MODELS OF THE 5938 04:32:10,059 --> 04:32:12,861 IMMUNE REGULATION AND YOU LOOK 5939 04:32:12,861 --> 04:32:14,997 AT THE LITERATURE IN DOWN 5940 04:32:14,997 --> 04:32:16,165 SYNDROME THERE'S VERY LITTLE IN 5941 04:32:16,165 --> 04:32:18,000 IMMUNE DYSREGULATION AND WE 5942 04:32:18,000 --> 04:32:19,568 APPRECIATE THE MOUSE MODELS HAVE 5943 04:32:19,568 --> 04:32:21,403 STRONG IMMUNE PHENOTYPES. 5944 04:32:21,403 --> 04:32:24,106 BUT ALSO BEYOND ANIMAL MODELS 5945 04:32:24,106 --> 04:32:27,376 MAKING SURE WE'RE THINK OF OTHER 5946 04:32:27,376 --> 04:32:32,781 MODELS LIKE IPSC BASED MODEL. 5947 04:32:32,781 --> 04:32:37,453 IN TERMS OF COLLABORATION AND 5948 04:32:37,453 --> 04:32:39,621 PARTICIPATION, THERE WERE TWO 5949 04:32:39,621 --> 04:32:42,024 RECOGNIZED ONE IS THE DIVIDE 5950 04:32:42,024 --> 04:32:44,760 MAKING SURE WE HAVE AVENUES FOR 5951 04:32:44,760 --> 04:32:45,761 CONVERSATION BETWEEN THE 5952 04:32:45,761 --> 04:32:47,563 CLINICIANS AND THE BASIC 5953 04:32:47,563 --> 04:32:51,233 SCIENTISTS BUT ALSO PEDIATRIC 5954 04:32:51,233 --> 04:32:52,401 ADULT DIVIDE. 5955 04:32:52,401 --> 04:32:54,003 IN THE MEDICAL CARE SPACE 5956 04:32:54,003 --> 04:32:55,237 SOMETIMES AFTER THE CHILDREN AGE 5957 04:32:55,237 --> 04:33:02,077 OUT OF PEDIATRIC CARE THEY GET 5958 04:33:02,077 --> 04:33:10,519 LOST IT MAKES IT HARD TO FIND 5959 04:33:10,519 --> 04:33:13,589 CONTINUITY ACROSS THE LIFE SPAN 5960 04:33:13,589 --> 04:33:16,558 AND HAVE A MORE UNDERSTANDING OF 5961 04:33:16,558 --> 04:33:20,562 THE CONDITION. 5962 04:33:20,562 --> 04:33:21,597 TALKING ABOUT CONFERENCE. 5963 04:33:21,597 --> 04:33:24,133 PERHAPS IMMUNE SYSTEM 5964 04:33:24,133 --> 04:33:28,937 DYSREGULATION IN DOWN SYNDROME 5965 04:33:28,937 --> 04:33:31,373 AND BRING IN OTHER DISCIPLINES 5966 04:33:31,373 --> 04:33:31,607 AS WELL. 5967 04:33:31,607 --> 04:33:36,478 IN TERMS OF STRATEGIES TO 5968 04:33:36,478 --> 04:33:37,179 ADVANCE THE FIELD. 5969 04:33:37,179 --> 04:33:39,148 THAT'S MEANT TO BE QUIET UNTIL 5970 04:33:39,148 --> 04:33:41,884 YOU PROVOKE IT. 5971 04:33:41,884 --> 04:33:44,453 WE HAVE LITTLE INFORMATION ABOUT 5972 04:33:44,453 --> 04:33:48,557 THEY RESPOND TO VACCINES AND 5973 04:33:48,557 --> 04:33:50,125 PATHOGENS AND PARASITES. 5974 04:33:50,125 --> 04:33:50,859 WE DON'T KNOW. 5975 04:33:50,859 --> 04:33:53,395 HOW TO START COLLECTING THE DATA 5976 04:33:53,395 --> 04:33:55,030 BOTH THROUGH HUMAN RESEARCH AND 5977 04:33:55,030 --> 04:34:05,407 THROUGH ANIMAL MODELS. 5978 04:34:17,920 --> 04:34:21,423 AND THERE WAS ENTHUSIASM FOR THE 5979 04:34:21,423 --> 04:34:23,559 STUDY OF COMPOUNDS AND WE HAVE 5980 04:34:23,559 --> 04:34:24,827 ANTI-INFLAMMATORY PROPERTIES AND 5981 04:34:24,827 --> 04:34:27,062 WE'RE WORK WITH JAK INHIBITERS 5982 04:34:27,062 --> 04:34:31,934 AND OTHER BIOLOGICALS. 5983 04:34:31,934 --> 04:34:33,802 THERE'S NATURAL COMPOUNDS AND 5984 04:34:33,802 --> 04:34:36,905 PERHAPS A SYSTEMATIC STUDY OF 5985 04:34:36,905 --> 04:34:38,207 THEIR EFFECTS IN DOWN SYNDROME 5986 04:34:38,207 --> 04:34:40,142 WOULD BE WORTHY PURSUIT. 5987 04:34:40,142 --> 04:34:44,613 THERE WAS TALK OF REPURPOSING 5988 04:34:44,613 --> 04:34:46,148 MEDICINES IF THE SCIENCE POINTS 5989 04:34:46,148 --> 04:34:47,483 TO PATHWAYS WHERE MEDICINES 5990 04:34:47,483 --> 04:34:49,151 EXIST MAKE SURE WE'RE NOT TRYING 5991 04:34:49,151 --> 04:34:51,987 TO COME OUT WITH A NEW DRUG BUT 5992 04:34:51,987 --> 04:34:56,125 TRYING TO REPURPOSE DRUGS THAT 5993 04:34:56,125 --> 04:34:56,658 ALREADY EXIST. 5994 04:34:56,658 --> 04:34:56,792 . 5995 04:34:56,792 --> 04:34:58,527 IN TERMS HOW TO LEVERAGE A.I. 5996 04:34:58,527 --> 04:35:00,662 MACHINE LEARNING AND NEW 5997 04:35:00,662 --> 04:35:02,364 TECHNOLOGIES, THERE WAS AN 5998 04:35:02,364 --> 04:35:04,633 APPRECIATION THAT WE HAD MORE 5999 04:35:04,633 --> 04:35:07,936 DATA FOR THIS TO WORK AND 6000 04:35:07,936 --> 04:35:10,506 TRAINING DATA SETS AND THIS 6001 04:35:10,506 --> 04:35:15,277 SHOULD COME BOTH FROM THE HUMAN 6002 04:35:15,277 --> 04:35:24,086 BIO SPECIMENS AND WHAT COULD 6003 04:35:24,086 --> 04:35:30,092 A.I. DO FOR US? 6004 04:35:30,092 --> 04:35:32,127 AND THERE'S A CO-OCCURRING 6005 04:35:32,127 --> 04:35:33,829 CONDITION OF A FLARE AND 6006 04:35:33,829 --> 04:35:36,231 BIOMARKERS OF CLINICAL VALUE AND 6007 04:35:36,231 --> 04:35:39,501 ALSO THERE WAS TALK ABOUT USING 6008 04:35:39,501 --> 04:35:41,770 COMPUTATIONAL PHARMACOLOGY IF 6009 04:35:41,770 --> 04:35:44,506 YOU WILL TO EITHER COME OUT WITH 6010 04:35:44,506 --> 04:35:46,942 NEW DRUGS THAT CAN ADDRESS THE 6011 04:35:46,942 --> 04:35:48,477 IMMUNE PATHWAYS OR MAKE THEM 6012 04:35:48,477 --> 04:35:50,646 BETTER LIKE JAK INHIBITORS THAT 6013 04:35:50,646 --> 04:35:56,151 CON PENETRATE THE BLOOD-BRAIN 6014 04:35:56,151 --> 04:35:59,288 BARRIER AND A COORDINATING 6015 04:35:59,288 --> 04:35:59,521 CENTER. 6016 04:35:59,521 --> 04:36:00,956 THERE WAS TALK ABOUT COLLECTING 6017 04:36:00,956 --> 04:36:03,025 THE DATA FROM INTERNATIONAL 6018 04:36:03,025 --> 04:36:06,261 COHORTS AS A RECURRING THEME AND 6019 04:36:06,261 --> 04:36:08,163 WE'RE PREPARING FOR THAT AND 6020 04:36:08,163 --> 04:36:11,366 HAVE MENTAL MAPS THAT THIS WOULD 6021 04:36:11,366 --> 04:36:15,304 WORK AND THERE WAS ALSO 6022 04:36:15,304 --> 04:36:17,773 COMMENTARIES BEYOND THE ABILITY 6023 04:36:17,773 --> 04:36:19,641 TO SYNTHESIZE DATA ACROSS 6024 04:36:19,641 --> 04:36:22,744 COHORTS HAVE YOU DATA SETS WITH 6025 04:36:22,744 --> 04:36:23,879 RAPID FIRE IMPORTANT ANALYTICS 6026 04:36:23,879 --> 04:36:25,314 WHICH IS SOMETHING WE AGREE WITH 6027 04:36:25,314 --> 04:36:27,749 AND ARE WORKING VERY HARD TO 6028 04:36:27,749 --> 04:36:30,152 MAKE SURE THE DATA IS NOT JUST 6029 04:36:30,152 --> 04:36:39,828 FOR THE DATA SCIENTISTS BUT ALSO 6030 04:36:39,828 --> 04:36:42,898 HOW TO CODE AND MORE FRIENDLY 6031 04:36:42,898 --> 04:36:44,800 INTERACTIVE WAYS TO WORK WITH 6032 04:36:44,800 --> 04:36:47,369 THE DATA AND I'LL STOP THERE AND 6033 04:36:47,369 --> 04:36:51,306 NOT EXTEND MY WELCOME. 6034 04:36:51,306 --> 04:36:52,908 >> THANK YOU VERY MUCH. 6035 04:36:52,908 --> 04:36:54,309 ALL RIGHT. 6036 04:36:54,309 --> 04:36:55,744 NOW WE HAVE ALZHEIMER'S DISEASE. 6037 04:36:55,744 --> 04:36:57,179 THAT'S GOING TO BE DR. HEAD AND 6038 04:36:57,179 --> 04:37:07,356 DR. TOMI. 6039 04:37:08,190 --> 04:37:11,393 >> LAUREN HAD TO HIT THE ROAD SO 6040 04:37:11,393 --> 04:37:13,528 I'LL KEEP IT SHORT BECAUSE I 6041 04:37:13,528 --> 04:37:17,933 KNOW WE'RE GETTING LOW AND TIME 6042 04:37:17,933 --> 04:37:18,967 AND ALREADY WHAT WE DISCUSSED 6043 04:37:18,967 --> 04:37:24,439 HAS BEEN MENTION. 6044 04:37:24,439 --> 04:37:27,309 BARRIERS FOR AD RESEARCH IN THE 6045 04:37:27,309 --> 04:37:29,211 DOWN SYNDROME SPACE AND REMARKS 6046 04:37:29,211 --> 04:37:30,445 ABOUT CONCERNS FOR ANIMAL 6047 04:37:30,445 --> 04:37:30,712 MODELS. 6048 04:37:30,712 --> 04:37:34,983 WE HAVE GREAT ANIMAL MODELS OF 6049 04:37:34,983 --> 04:37:35,484 DEVELOPMENT AND GREAT 6050 04:37:35,484 --> 04:37:36,985 ALZHEIMER'S DISEASE MODEL AND 6051 04:37:36,985 --> 04:37:37,552 NOT IN BETWEEN. 6052 04:37:37,552 --> 04:37:41,823 WE'D LOVE TO SEE MORE AND IPSCs 6053 04:37:41,823 --> 04:37:43,258 WERE SEEN AS A GOOD OPPORTUNITY. 6054 04:37:43,258 --> 04:37:45,093 WE'VE DISCUSSED ABOUT THE 6055 04:37:45,093 --> 04:37:45,827 CONCERNS RELATED TO DIVERSITY 6056 04:37:45,827 --> 04:37:52,901 AND THE LACK OF REPRESENTATION. 6057 04:37:52,901 --> 04:37:54,603 WE THINK THAT COULD BE INVOLVED 6058 04:37:54,603 --> 04:37:57,306 BY MAKING OUR TEAMS MORE DIVERSE 6059 04:37:57,306 --> 04:37:59,908 AND ENCOURAGING MORE JUNIOR 6060 04:37:59,908 --> 04:38:00,442 PEOPLE IN THE FIELD THAT 6061 04:38:00,442 --> 04:38:02,010 REPRESENT DIVERSITY. 6062 04:38:02,010 --> 04:38:05,414 THAT'S WHERE THE R25 NOFO WOULD 6063 04:38:05,414 --> 04:38:06,682 BE A GOOD OPPORTUNITY. 6064 04:38:06,682 --> 04:38:07,616 A LOT OF PEOPLE WERE CONCERNED 6065 04:38:07,616 --> 04:38:11,887 ABOUT ACCESS TO HUMAN SAMPLE AND 6066 04:38:11,887 --> 04:38:14,389 THAT WAS RAISED BY JUAQUIN AND 6067 04:38:14,389 --> 04:38:15,791 THE HUMAN RESEARCHERS WE HAVE 6068 04:38:15,791 --> 04:38:17,059 CONCERNS ABOUT ACCESSING THE 6069 04:38:17,059 --> 04:38:17,292 SAMPLE. 6070 04:38:17,292 --> 04:38:19,695 IT'S A TWO-WAY STREET. 6071 04:38:19,695 --> 04:38:20,629 SOME OPPORTUNITY WE CAN SEE 6072 04:38:20,629 --> 04:38:25,600 WHERE THE SAMPLES ARE STORED OR 6073 04:38:25,600 --> 04:38:27,035 HOMED WOULD BE HELPFUL. 6074 04:38:27,035 --> 04:38:30,872 ANOTHER THING THAT CAME UP 6075 04:38:30,872 --> 04:38:32,174 RELATED TO ALZHEIMER'S DISEASE 6076 04:38:32,174 --> 04:38:37,279 WAS WE ACKNOWLEDGE DOWN SYNDROME 6077 04:38:37,279 --> 04:38:41,783 THREE CAUSES, AND WE'RE FUNDING 6078 04:38:41,783 --> 04:38:45,420 SOURCE TO IDENTIFY THE UNIQUE 6079 04:38:45,420 --> 04:38:48,757 INDIVIDUAL TO ACCELERATE OUR 6080 04:38:48,757 --> 04:38:49,057 DISCOVERIES. 6081 04:38:49,057 --> 04:38:50,025 A LOT OF THE OTHER THINGS WERE 6082 04:38:50,025 --> 04:39:00,369 PRETTY MUCH COVERED. 6083 04:39:02,938 --> 04:39:13,248 >> NOW OUR LAST GROUP. 6084 04:39:22,724 --> 04:39:24,760 I WANT TO THEY CAN ORGANIZERS. 6085 04:39:24,760 --> 04:39:29,731 IT'S A FABULOUS CONFERENCE TO BE 6086 04:39:29,731 --> 04:39:31,032 A PART OF. 6087 04:39:31,032 --> 04:39:32,701 JUST TO REFRAME A LITTLE BIT AND 6088 04:39:32,701 --> 04:39:36,171 I THINK MAYBE BY STARTING TO 6089 04:39:36,171 --> 04:39:39,741 RENAME THIS COHORT AS SLEEP, 6090 04:39:39,741 --> 04:39:43,412 CIRCADIAN RHYTHMS AND SLEEP 6091 04:39:43,412 --> 04:39:45,247 DISORDERS AND INTRODUCE THE 6092 04:39:45,247 --> 04:39:46,515 BROADER SLEEP RESEARCH LANDSCAPE 6093 04:39:46,515 --> 04:39:47,816 WE SHOULD THINK ABOUT AND SLEEP 6094 04:39:47,816 --> 04:39:49,084 IS A BEHAVIOR. 6095 04:39:49,084 --> 04:39:49,618 IT'S A PROCESS AND IT'S A 6096 04:39:49,618 --> 04:39:53,221 FUNCTION. 6097 04:39:53,221 --> 04:39:54,623 CLINICALLY WE CAN DIAGNOSIS 6098 04:39:54,623 --> 04:39:56,158 DISORDERS FROM CHANGES IN 6099 04:39:56,158 --> 04:39:57,092 BEHAVIOR AND THE RESEARCH CAN 6100 04:39:57,092 --> 04:39:59,194 SHED LIGHT ON THE PROCESSES AND 6101 04:39:59,194 --> 04:40:01,863 GIVE US THESE WINDOWS INTO WHERE 6102 04:40:01,863 --> 04:40:03,365 MIGHT INTERVENTION BY OPTIMIZING 6103 04:40:03,365 --> 04:40:05,300 SLEEP IMPROVE FUNCTION. 6104 04:40:05,300 --> 04:40:06,701 SO I'M NOT GOING READ EVERYTHING 6105 04:40:06,701 --> 04:40:08,703 ON HERE BUT TO POINT OUT THERE'S 6106 04:40:08,703 --> 04:40:11,406 HUGE GAPS IN OUR UNDERSTANDING 6107 04:40:11,406 --> 04:40:14,242 ABOUT SLEEP AND ITS ROLE IN MANY 6108 04:40:14,242 --> 04:40:18,079 THINGS INCLUDING EARLY 6109 04:40:18,079 --> 04:40:18,380 DEVELOPMENT. 6110 04:40:18,380 --> 04:40:22,484 SLEEP CIRCUITRY STARTS IN 6111 04:40:22,484 --> 04:40:25,620 INFANTRY AND DON'T KNOW HOW IT 6112 04:40:25,620 --> 04:40:27,589 WORKS IN DEVELOPMENTAL DISORDERS 6113 04:40:27,589 --> 04:40:30,592 WRIT LARGE OR IN DOWN SYNDROME 6114 04:40:30,592 --> 04:40:33,328 AND THAT'S A GAP AREA AND SLEEP 6115 04:40:33,328 --> 04:40:37,165 AND THE PROCESS THAT UNDERPINS 6116 04:40:37,165 --> 04:40:38,533 THIS AND MAY NOT BE REPRESENTED 6117 04:40:38,533 --> 04:40:41,169 AS A DISORDER AND GET THAT 6118 04:40:41,169 --> 04:40:45,707 THROUGH IMAGING INCLUDING EEG 6119 04:40:45,707 --> 04:40:47,409 IMAGING AND THAT'S VERY RELEVANT 6120 04:40:47,409 --> 04:40:49,411 WHEN WE TALK ABOUT BIOMARKERS 6121 04:40:49,411 --> 04:40:52,647 THAT MAY HELP UNDERSTAND THE 6122 04:40:52,647 --> 04:40:55,250 EARLIEST PROCESSES OF DEMENTIA. 6123 04:40:55,250 --> 04:40:57,385 SLEEP DISORDERS GETS A LOT OF 6124 04:40:57,385 --> 04:40:59,087 ATTENTION AND IT SHOULD AND OUR 6125 04:40:59,087 --> 04:41:00,255 GENERAL APPROACH HAS BEEN TO 6126 04:41:00,255 --> 04:41:00,922 FOCUS ON THOSE. 6127 04:41:00,922 --> 04:41:05,927 YOU CAN SEE THEM LISTED ON THE 6128 04:41:05,927 --> 04:41:08,029 RIGHT AND WHAT WE DON'T TALK 6129 04:41:08,029 --> 04:41:09,364 ABOUT ARE THE OTHER SLEEP 6130 04:41:09,364 --> 04:41:13,869 DISORDER HAVE TO DO WITH THINGS 6131 04:41:13,869 --> 04:41:18,874 OUTSIDE OF APNEA AND I WAS 6132 04:41:18,874 --> 04:41:23,245 HEARTENED BEING A NEUROLOGIST IN 6133 04:41:23,245 --> 04:41:23,979 THE MENTAL HEALTH INSTITUTE 6134 04:41:23,979 --> 04:41:25,814 LOOKING AT THE MENTAL HEALTH OF 6135 04:41:25,814 --> 04:41:27,682 PEOPLE WITH DOWN SYNDROME AND 6136 04:41:27,682 --> 04:41:32,153 THIS IS A RIPE AREA TO SPEND 6137 04:41:32,153 --> 04:41:33,288 TIME EVALUATING THE RELATIONSHIP 6138 04:41:33,288 --> 04:41:37,058 BETWEEN INSOMNIA AND MENTAL 6139 04:41:37,058 --> 04:41:37,492 HEALTH. 6140 04:41:37,492 --> 04:41:39,060 THOSE ARE GAP AREAS AND I'LL 6141 04:41:39,060 --> 04:41:41,062 TURN IT OVER TO MY COLLEAGUE. 6142 04:41:41,062 --> 04:41:47,002 >> IT'S GREAT THERE'S BEEN 6143 04:41:47,002 --> 04:41:49,437 INCREASING IN THIS RELATED TO 6144 04:41:49,437 --> 04:41:51,139 DOWN SYNDROME. 6145 04:41:51,139 --> 04:41:51,840 IN PEDIATRICS CHILDREN WITH DOWN 6146 04:41:51,840 --> 04:41:54,676 SYNDROME ARE PAVING THE WAY TO 6147 04:41:54,676 --> 04:41:56,378 THE NEWEST IN DIAGNOSTICS AND 6148 04:41:56,378 --> 04:41:57,812 THERAPIES THAT WILL TRANSLATE TO 6149 04:41:57,812 --> 04:41:59,247 THE REST OF PEDIATRIC. 6150 04:41:59,247 --> 04:42:01,650 IT'S AN EXCITING TIME. 6151 04:42:01,650 --> 04:42:04,619 PICKING UP ON SOME OF WHAT WAS 6152 04:42:04,619 --> 04:42:04,986 JUST DISCUSSED. 6153 04:42:04,986 --> 04:42:07,188 SOME OF THE CHALLENGES WE 6154 04:42:07,188 --> 04:42:08,223 IDENTIFIED ARE THERE ARE SILOS 6155 04:42:08,223 --> 04:42:09,357 THAT STILL EXIST. 6156 04:42:09,357 --> 04:42:11,459 THERE'S A NUMBER TRIALS FUNDED 6157 04:42:11,459 --> 04:42:14,863 AND ARE ONGOING BUT MOST ARE 6158 04:42:14,863 --> 04:42:16,565 FOCUSSED ON OBSTRUCTIVE SLEEP 6159 04:42:16,565 --> 04:42:19,000 APNEA AND IT WOULD BE GREAT TO 6160 04:42:19,000 --> 04:42:20,468 BROADEN THAT TO OTHER ISSUES 6161 04:42:20,468 --> 04:42:22,270 THAT AFFECT THE DOWN SYNDROME 6162 04:42:22,270 --> 04:42:22,537 COMMUNITY. 6163 04:42:22,537 --> 04:42:24,139 THERE'S A FAIRLY HIGH COST OF 6164 04:42:24,139 --> 04:42:25,407 ENTRY WHEN IT COMES TO 6165 04:42:25,407 --> 04:42:26,675 TECHNOLOGIES AND LEARNING THAT 6166 04:42:26,675 --> 04:42:30,078 NEEDS TO HAPPEN AS AN 6167 04:42:30,078 --> 04:42:32,213 INVESTIGATOR BUT DOESN'T HAVE TO 6168 04:42:32,213 --> 04:42:34,049 BE SO WITH NEWER TECHNOLOGIES 6169 04:42:34,049 --> 04:42:37,218 AND WANT TO BREAK DOWN BARRIERS. 6170 04:42:37,218 --> 04:42:43,858 AND BETTER WAYS TO SYNTHESIZE 6171 04:42:43,858 --> 04:42:47,162 DATA TO THE COMMUNITY INVOLVED. 6172 04:42:47,162 --> 04:42:49,564 IN TERMS OF ENHANCING 6173 04:42:49,564 --> 04:42:50,498 COMMUNICATION AND COLLABORATION. 6174 04:42:50,498 --> 04:42:52,267 WE IDENTIFIED LOOKING BEYOND THE 6175 04:42:52,267 --> 04:42:54,035 BIG CENTERS RIGHT NOW INVOLVED 6176 04:42:54,035 --> 04:42:55,837 AND LOOKING ACROSS DISCIPLINES. 6177 04:42:55,837 --> 04:43:00,508 ONE THING ABOUT SLEEP IS IT'S 6178 04:43:00,508 --> 04:43:01,176 INTERDISCIPLINARY COMMUNITY THAT 6179 04:43:01,176 --> 04:43:02,477 INVOLVES DISCIPLINES TO WELCOME 6180 04:43:02,477 --> 04:43:05,614 OTHER PEOPLE AND TALK TO OTHER 6181 04:43:05,614 --> 04:43:07,782 GROUPS MENTIONED THE MATCH 6182 04:43:07,782 --> 04:43:09,384 MAKING APPROACH WE DISCUSSED IN 6183 04:43:09,384 --> 04:43:10,619 OUR GROUP. 6184 04:43:10,619 --> 04:43:13,622 IN TERMS OF PARADIGM SHIFTING I 6185 04:43:13,622 --> 04:43:18,293 THINK IT GOES WITH NUMBER 4 WE 6186 04:43:18,293 --> 04:43:18,927 FEEL ARTIFICIAL INTELLIGENCE AND 6187 04:43:18,927 --> 04:43:20,161 MACHINE LEARNING TECHNOLOGIES 6188 04:43:20,161 --> 04:43:25,834 COULD BE GAME CHANGERS IN SLEEP 6189 04:43:25,834 --> 04:43:28,169 FOR DATA THAT CAN LEND ITSELF 6190 04:43:28,169 --> 04:43:31,239 AND WE HAD DISCUSSION WITH 6191 04:43:31,239 --> 04:43:32,707 MEMBERS HOW TO BETTER HARMONIZE 6192 04:43:32,707 --> 04:43:34,376 AND ANALYZE THE DATA BOTH FOR US 6193 04:43:34,376 --> 04:43:36,211 DOING THE INVESTIGATIONS AND THE 6194 04:43:36,211 --> 04:43:37,212 SECONDARY USERS. 6195 04:43:37,212 --> 04:43:39,180 I THINK IT'S AN EXCITING 6196 04:43:39,180 --> 04:43:39,481 POSSIBILITY. 6197 04:43:39,481 --> 04:43:41,182 THEY'VE HAD DISCUSSION IN THE 6198 04:43:41,182 --> 04:43:41,416 MEETING. 6199 04:43:41,416 --> 04:43:44,219 IT'S BEEN GREAT IN STARTING 6200 04:43:44,219 --> 04:43:44,919 DISCUSSIONS. 6201 04:43:44,919 --> 04:43:47,589 THERE'S LOTS OF DIFFERENT DATA 6202 04:43:47,589 --> 04:43:51,393 THAT HAVE BECOME AVAILABLE AND 6203 04:43:51,393 --> 04:43:53,662 PEOPLE ANALYZED IN DIFFERENT 6204 04:43:53,662 --> 04:43:56,398 WAYS AND IN THE CONSUMER SPACE 6205 04:43:56,398 --> 04:43:57,632 THERE'S NEW TECHNOLOGIES TO COME 6206 04:43:57,632 --> 04:43:59,534 UP WITH BEST PRACTICES. 6207 04:43:59,534 --> 04:44:02,671 IN TERMS OF THE DCC I MENTIONED 6208 04:44:02,671 --> 04:44:04,673 COMING UP WITH WAYS TO HARMONIZE 6209 04:44:04,673 --> 04:44:07,375 TE DATA AND THERE'S RESOURCES 6210 04:44:07,375 --> 04:44:09,377 AVAILABLE USING OTHER SPACES WE 6211 04:44:09,377 --> 04:44:13,448 CAN LEVERAGE FOR THIS KIND OF 6212 04:44:13,448 --> 04:44:13,748 OPPORTUNITY. 6213 04:44:13,748 --> 04:44:16,151 AND A TERMS OF CHALLENGES TO 6214 04:44:16,151 --> 04:44:18,586 HELP INCLUDE TRAINING. 6215 04:44:18,586 --> 04:44:21,389 SOME HAS BEEN SENT FROM OTHER 6216 04:44:21,389 --> 04:44:22,991 GROUPS BUT ENCOURAGING ATTENDING 6217 04:44:22,991 --> 04:44:28,563 MEETINGS LIKE THIS AND WE'VE HAD 6218 04:44:28,563 --> 04:44:30,265 PEOPLE IN THIS SPACE AND PROVIDE 6219 04:44:30,265 --> 04:44:31,833 BEING EARLY CAREER FUNDING FOR 6220 04:44:31,833 --> 04:44:33,702 SMALL GRANTS TO ALLOW SOME DATA 6221 04:44:33,702 --> 04:44:36,137 TO BE ANALYZED IN A SECONDARY 6222 04:44:36,137 --> 04:44:36,371 FASHION. 6223 04:44:36,371 --> 04:44:45,180 THANKS A LOT. 6224 04:44:45,180 --> 04:44:46,047 >> THANK YOU. 6225 04:44:46,047 --> 04:44:51,386 I THINK IT'S EXCITING TO SEE ALL 6226 04:44:51,386 --> 04:44:54,089 THE COLLABORATION OVER THIS 6227 04:44:54,089 --> 04:44:58,526 MEETING BETWEEN INVESTIGATORS 6228 04:44:58,526 --> 04:45:00,862 AND COMMUNITY BASED RESEARCH AND 6229 04:45:00,862 --> 04:45:03,798 WE APPRECIATE ALL YOUR INPUT AND 6230 04:45:03,798 --> 04:45:08,369 AS MENTIONED, OUR NIH GROUP WILL 6231 04:45:08,369 --> 04:45:09,904 SYNTHESIZE SOME OF THIS WRAP UP 6232 04:45:09,904 --> 04:45:10,772 INFORMATION AND IT WILL BE 6233 04:45:10,772 --> 04:45:12,640 AVAILABLE TO YOU AT SOME POINT 6234 04:45:12,640 --> 04:45:15,376 THROUGH OUR REPORT SO THANK YOU 6235 04:45:15,376 --> 04:45:16,144 VERY MUCH. 6236 04:45:16,144 --> 04:45:19,881 SO WE'RE GOING TO FINISH WITH 6237 04:45:19,881 --> 04:45:21,182 CLOSING REMARKS FROM DR. TARA 6238 04:45:21,182 --> 04:45:24,152 SCHWETZ LOOKING AHEAD AND THE 6239 04:45:24,152 --> 04:45:28,590 NEXT FIVE YEARS OF INCLUDE. 6240 04:45:28,590 --> 04:45:30,692 >> HI, EVERYONE. 6241 04:45:30,692 --> 04:45:32,660 IT'S MY GREAT YOUR TREAT FOR 6242 04:45:32,660 --> 04:45:36,931 HANGING ON UNTIL THE VERY END OF 6243 04:45:36,931 --> 04:45:40,635 THIS MEETING AS MELISSA 6244 04:45:40,635 --> 04:45:44,639 INTRODUCED HER BOSS YESTERDAY, I 6245 04:45:44,639 --> 04:45:46,608 GET TO INTRODUCE MY BOSS AND 6246 04:45:46,608 --> 04:45:50,745 WOULD LIKE IT INTRODUCE YOU ALL 6247 04:45:50,745 --> 04:45:57,285 TO TARA SCHWETZ THE NIH DEPUTY 6248 04:45:57,285 --> 04:45:58,386 DIRECTOR AND PRIOR TO HOLDING 6249 04:45:58,386 --> 04:46:01,556 THE POSITION HAS SERVED AS THE 6250 04:46:01,556 --> 04:46:05,560 NIH ACTING PRINCIPLE DEPUTY FOR 6251 04:46:05,560 --> 04:46:08,530 TWO YEARS PRIOR TO HER CURRENT 6252 04:46:08,530 --> 04:46:08,963 POSITION. 6253 04:46:08,963 --> 04:46:13,935 SHE'S LED MANY NIH RESEARCH 6254 04:46:13,935 --> 04:46:15,370 INITIATIVES OVER THE YEARS AND 6255 04:46:15,370 --> 04:46:17,338 SPENT TIME AT THE WHITE HOUSE, 6256 04:46:17,338 --> 04:46:19,507 OFFICE OF SCIENCE AND TECHNOLOGY 6257 04:46:19,507 --> 04:46:23,611 POLICY DESIGNING ARPA-H AND IT'S 6258 04:46:23,611 --> 04:46:23,845 CONCEPT. 6259 04:46:23,845 --> 04:46:26,881 SHE'S LED MANY INNOVATION 6260 04:46:26,881 --> 04:46:27,549 EFFORTS IN BIOMEDICAL RESEARCH 6261 04:46:27,549 --> 04:46:29,884 AND FORTUNATELY FOR US SHE'S 6262 04:46:29,884 --> 04:46:34,989 BEEN VERY INVOLVED INCLUDE FOR 6263 04:46:34,989 --> 04:46:37,258 THE LAST SEVERAL YEARS 6264 04:46:37,258 --> 04:46:38,393 CO-CHAIRING OUR STEERING 6265 04:46:38,393 --> 04:46:39,427 COMMITTEE ON BEHALF OF THE 6266 04:46:39,427 --> 04:46:42,063 OFFICE THE DIRECTOR IN 6267 04:46:42,063 --> 04:46:44,799 PARTNERSHIP WITH DR. BIANCHI AND 6268 04:46:44,799 --> 04:46:48,069 GIBBONS AND HODES AS YOU HEARD 6269 04:46:48,069 --> 04:46:48,303 EARLIER. 6270 04:46:48,303 --> 04:46:50,805 SHE'LL CLOSE IT OUT FOR US THIS 6271 04:46:50,805 --> 04:46:51,439 AFTERNOON. 6272 04:46:51,439 --> 04:46:58,613 THANKS VERY MUCH. 6273 04:46:58,613 --> 04:47:00,315 >> THANK YOU. 6274 04:47:00,315 --> 04:47:01,583 WE WERE STRATEGIC IN HAVING 6275 04:47:01,583 --> 04:47:03,151 FOLKS FROM OUR TEAM INTRODUCE 6276 04:47:03,151 --> 04:47:05,420 US. 6277 04:47:05,420 --> 04:47:07,121 THANK YOU NEAR INTRODUCTION. 6278 04:47:07,121 --> 04:47:08,690 I'M EXCITED TO BE HERE IN PERSON 6279 04:47:08,690 --> 04:47:09,824 WITH YOU. 6280 04:47:09,824 --> 04:47:11,960 I'VE BEEN WATCHING ON AND OFF 6281 04:47:11,960 --> 04:47:14,662 ONLINE OVER THE LAST TWO DAYS 6282 04:47:14,662 --> 04:47:17,098 AND GRATEFUL TO BE ABLE TO BE 6283 04:47:17,098 --> 04:47:17,966 HERE TO TALK TO YOU ALL A LITTLE 6284 04:47:17,966 --> 04:47:20,068 BIT ABOUT SOME OF THE WORK OF 6285 04:47:20,068 --> 04:47:20,969 INCLUDE WHICH MANY OF YOU KNOW 6286 04:47:20,969 --> 04:47:25,039 BECAUSE YOU ACTIVELY DO IT BUT 6287 04:47:25,039 --> 04:47:27,442 ALSO THINKING ABOUT SOME EFFORTS 6288 04:47:27,442 --> 04:47:31,179 LOOKING AHEAD. 6289 04:47:31,179 --> 04:47:37,886 THE WORK YOU RAUL DOING IS 6290 04:47:37,886 --> 04:47:43,958 INCREDIBLY INSPIRING AND ONE OF 6291 04:47:43,958 --> 04:47:45,793 THE PROGRAMS US AT LEADERSHIP 6292 04:47:45,793 --> 04:47:48,162 ARE INVOLVED IN AND I DON'T 6293 04:47:48,162 --> 04:47:52,066 THINK THAT IS. 6294 04:47:52,066 --> 04:47:56,170 AND OUR RELATIVELY NEW NIH 6295 04:47:56,170 --> 04:47:59,741 DIRECTOR WAS SO DELIGHTED THAT 6296 04:47:59,741 --> 04:48:00,742 THIS MEETING WITH YOU TODAY. 6297 04:48:00,742 --> 04:48:04,479 I KNOW I'M THE PERSON STANDING 6298 04:48:04,479 --> 04:48:06,581 BETWEEN YOU AND FLIGHTS AND 6299 04:48:06,581 --> 04:48:08,149 SNACKS AND COLLEAGUES AND I'LL 6300 04:48:08,149 --> 04:48:09,450 MAKE THIS QUICK AND HILTON A FEW 6301 04:48:09,450 --> 04:48:10,685 AREAS. 6302 04:48:10,685 --> 04:48:15,456 -- HIT ON A FEW AREAS. 6303 04:48:15,456 --> 04:48:17,825 AS YOU'RE AWARE SOME FINDINGS 6304 04:48:17,825 --> 04:48:19,894 OVER THE LAST FIVE YEARS WITH 6305 04:48:19,894 --> 04:48:24,966 INCLUDE OF COURSE HELP TO 6306 04:48:24,966 --> 04:48:29,904 ADVANCE SCIENCE ACROSS THE WORD 6307 04:48:29,904 --> 04:48:31,873 AND WORK TO IMPROVE THE QUALITY 6308 04:48:31,873 --> 04:48:32,907 OF LIFE FOR PEOPLE WITH DOWN 6309 04:48:32,907 --> 04:48:34,142 SYNDROME AND THIS HIGHLIGHTS THE 6310 04:48:34,142 --> 04:48:36,144 CALL TO ACTION AND INSPIRING 6311 04:48:36,144 --> 04:48:39,414 WORDS THAT DAVID EGAN SHARED 6312 04:48:39,414 --> 04:48:40,715 WITH US THIS MORNING ABOUT THAT 6313 04:48:40,715 --> 04:48:43,284 DRIVE TO ENSURE THAT EVERYONE 6314 04:48:43,284 --> 04:48:45,453 LIVES A HEALTHY LIFE AND THAT WE 6315 04:48:45,453 --> 04:48:46,921 SHOULD BE VERY INCLUSIVE IN THAT 6316 04:48:46,921 --> 04:48:51,459 APPROACH AND OF COURSE THOSE ARE 6317 04:48:51,459 --> 04:48:55,930 FUNDAMENTAL TO INCLUDE. 6318 04:48:55,930 --> 04:48:58,299 LET ME SEE IF I CAN ADVANCE THE 6319 04:48:58,299 --> 04:48:59,600 SLIDES SUCCESSFULLY. 6320 04:48:59,600 --> 04:49:00,034 GREAT. 6321 04:49:00,034 --> 04:49:01,869 I WANT TO ECHO ONE POINT BEFORE 6322 04:49:01,869 --> 04:49:05,006 I GET IN AND THAT IS THAT THE 6323 04:49:05,006 --> 04:49:05,773 INFORMATION THAT YOU HEARD 6324 04:49:05,773 --> 04:49:08,142 ACROSS ALL THE DIFFERENT 6325 04:49:08,142 --> 04:49:09,978 SESSIONS OVER THE LAST TWO DAYS 6326 04:49:09,978 --> 04:49:12,146 IS A SMALL SAMPLING OF ALL THE 6327 04:49:12,146 --> 04:49:16,150 WORK BEING DONE ACROSS INCLUDE. 6328 04:49:16,150 --> 04:49:18,219 WE'RE EXCITED YOU WERE ABLE TO 6329 04:49:18,219 --> 04:49:20,154 GATHER HERE TO SHARE IT WITH 6330 04:49:20,154 --> 04:49:27,929 EACH OTHER. 6331 04:49:27,929 --> 04:49:32,200 AND BEING LEVERAGED BY 18 6332 04:49:32,200 --> 04:49:32,900 DIFFERENT I.C.s. 6333 04:49:32,900 --> 04:49:35,003 WE HAVE A SERIES OF WORKING 6334 04:49:35,003 --> 04:49:37,572 GROUPS ABOUT FIVE DIFFERENT 6335 04:49:37,572 --> 04:49:40,441 WORKING GROUPS THAT COME 6336 04:49:40,441 --> 04:49:42,543 TOGETHER AND HELP TO DEVELOP 6337 04:49:42,543 --> 04:49:43,644 FUNDING OPPORTUNITY ANNOUNC 6338 04:49:43,644 --> 04:49:46,247 ANNOUNCEMENTS AND PORTFOLIO 6339 04:49:46,247 --> 04:49:46,814 ANALYSES. 6340 04:49:46,814 --> 04:49:49,417 EVERYTHING ON YOUR WEBSITE 6341 04:49:49,417 --> 04:49:53,488 THEY'LL HAND IN IN SOME WAY, 6342 04:49:53,488 --> 04:49:54,889 SHAPE OR FORM OR ORGANIZE THE 6343 04:49:54,889 --> 04:49:57,725 MEETING HERE TODAY. 6344 04:49:57,725 --> 04:50:00,795 WE ALSO INCLUDE A STEERING 6345 04:50:00,795 --> 04:50:05,833 COMMITTEE THAT HELPS TO GOVERN 6346 04:50:05,833 --> 04:50:14,575 INCLUDE AND DR. BIANCHI WAS HERE 6347 04:50:14,575 --> 04:50:23,418 YESTERDAY MORNING AN SERVE AS 6348 04:50:23,418 --> 04:50:24,652 AMBASSADORS FOR INCLUDE AND 6349 04:50:24,652 --> 04:50:30,324 ENSURE THE PROGRAM IS A SUCCESS. 6350 04:50:30,324 --> 04:50:32,360 THE BEATING HEART OF INCLUDE IS 6351 04:50:32,360 --> 04:50:33,928 THE LEADERSHIP TEAM WE HAVE AND 6352 04:50:33,928 --> 04:50:39,000 HOPEFULLY MANY OF THESE FACES 6353 04:50:39,000 --> 04:50:44,439 LOOK FAMILIAR AND WE PROVIDED 6354 04:50:44,439 --> 04:50:46,808 THOUGHTFUL INPUT AND LEADERSHIP 6355 04:50:46,808 --> 04:50:51,679 AND STRATEGIC VISION AND HELP US 6356 04:50:51,679 --> 04:50:52,380 PUSH THINGS FORWARD WITH THE 6357 04:50:52,380 --> 04:51:02,690 PROGRAM OVER ALL. 6358 04:51:03,157 --> 04:51:04,592 WHEN IT WAS ESTABLISHED THERE 6359 04:51:04,592 --> 04:51:07,495 WAS A GROUP AT NIH FORMED IN 6360 04:51:07,495 --> 04:51:10,665 2006 THAT WAS WORKING ON DOWN 6361 04:51:10,665 --> 04:51:12,133 SYNDROME AND PROMOTING DOWN 6362 04:51:12,133 --> 04:51:12,733 SYNDROME RESEARCH ACROSS THE 6363 04:51:12,733 --> 04:51:13,734 AGENCY. 6364 04:51:13,734 --> 04:51:20,041 SO INCLUDE WAS ABLE TO LEVERAGE 6365 04:51:20,041 --> 04:51:24,178 THIS WORKING GROUP AND THEY WERE 6366 04:51:24,178 --> 04:51:27,482 INVOLVED INCLUDE AND THIS 6367 04:51:27,482 --> 04:51:28,816 WORKING GROUP INCLUDES 24 6368 04:51:28,816 --> 04:51:30,518 DIFFERENT INSTITUTE, CENTERS AND 6369 04:51:30,518 --> 04:51:33,788 OFFICES EMPHASIZING THE 6370 04:51:33,788 --> 04:51:35,723 CROSS-AGENCY APPROACH TO DOWN 6371 04:51:35,723 --> 04:51:37,091 SYNDROME RESEARCH. 6372 04:51:37,091 --> 04:51:41,195 BUT ALSO THEY WORK TO HELP TO 6373 04:51:41,195 --> 04:51:43,030 IDENTIFY AREAS OF SCIENTIFIC 6374 04:51:43,030 --> 04:51:44,599 OPPORTUNITY AND HELP TO WORK 6375 04:51:44,599 --> 04:51:46,567 CLOSELY WITH INCLUDE TO INFORM 6376 04:51:46,567 --> 04:51:47,201 ALL THE EFFORTS ONGOING ACROSS 6377 04:51:47,201 --> 04:51:53,141 NIH. 6378 04:51:53,141 --> 04:51:55,877 OVER THE LAST FIVE YEARS, 6379 04:51:55,877 --> 04:51:57,812 INCLUDE HAS BROUGHT 6380 04:51:57,812 --> 04:51:59,113 INVESTIGATORS ACROSS DISCIPLINES 6381 04:51:59,113 --> 04:52:01,949 AND FIELDS AND WE SUPPORTED OVER 6382 04:52:01,949 --> 04:52:03,484 330 PROJECTS AS A PART OF 6383 04:52:03,484 --> 04:52:07,088 INCLUDE. 6384 04:52:07,088 --> 04:52:09,490 I HOPE MANY OF YOU ARE KNOW 6385 04:52:09,490 --> 04:52:13,461 WE'RE EXCITED TO LAUNCH THIS 6386 04:52:13,461 --> 04:52:15,496 SUMMER THE INCLUDE THE COHORT 6387 04:52:15,496 --> 04:52:21,569 DEVELOPMENT PROGRAM. 6388 04:52:21,569 --> 04:52:23,771 AND INCLUDE DIVERSITY OF 6389 04:52:23,771 --> 04:52:28,309 INDIVIDUALS WITH DOWN SYNDROME 6390 04:52:28,309 --> 04:52:30,678 PARTICIPATING IN CLINICAL 6391 04:52:30,678 --> 04:52:33,514 RESEARCH AND HELP RECRUIT 6392 04:52:33,514 --> 04:52:36,617 PARTICIPANT WITH DOWN SYNDROME 6393 04:52:36,617 --> 04:52:39,187 IN ACROSS THE LIFE SPAN IN 6394 04:52:39,187 --> 04:52:42,190 STUDIES TO PROVIDE ADDITIONAL 6395 04:52:42,190 --> 04:52:42,823 AVENUES FOR CLINICAL RESEARCH 6396 04:52:42,823 --> 04:52:49,864 AND DEVELOPMENT. 6397 04:52:49,864 --> 04:52:51,499 THERE'S TWO AREAS OF FOCUS AND 6398 04:52:51,499 --> 04:52:55,136 ACCESS TO CARE AND HOW TO 6399 04:52:55,136 --> 04:52:56,003 IMPROVE QUALITY OF LIFE. 6400 04:52:56,003 --> 04:52:59,674 ONE MECHANISM IN WHICH WE SEE A 6401 04:52:59,674 --> 04:53:02,109 LOT OF OPPORTUNITY AS MOBILE 6402 04:53:02,109 --> 04:53:03,945 HELP INNOVATION AND DIGITAL 6403 04:53:03,945 --> 04:53:04,278 TECHNOLOGIES. 6404 04:53:04,278 --> 04:53:07,048 BOTH OF THOSE THINGS GENERATE A 6405 04:53:07,048 --> 04:53:08,783 TREMENDOUS AMOUNT OF DATA AND SO 6406 04:53:08,783 --> 04:53:12,153 WE'LL ALSO SEE AN INCREASE 6407 04:53:12,153 --> 04:53:15,323 EMPHASIS ON DATA SHARING AND 6408 04:53:15,323 --> 04:53:18,626 DATA INTEROPERABILITY AND 6409 04:53:18,626 --> 04:53:20,161 HELPING BUILD UP AND STRENGTHEN 6410 04:53:20,161 --> 04:53:27,001 THE INCLUDE DATA HUB. 6411 04:53:27,001 --> 04:53:28,269 AND WAYS TO LEVERAGE A.I. 6412 04:53:28,269 --> 04:53:29,403 THERE'S A LOT OF OPPORTUNITY WE 6413 04:53:29,403 --> 04:53:30,271 SEE THERE. 6414 04:53:30,271 --> 04:53:31,839 HOW TO INCORPORATE THAT AS WELL 6415 04:53:31,839 --> 04:53:32,974 AS SOME OF THE EXISTING TOOLS 6416 04:53:32,974 --> 04:53:42,783 AND RESOURCES THAT WE HAVE. 6417 04:53:42,783 --> 04:53:44,185 AND AN IMPORTANT FACTOR OF 6418 04:53:44,185 --> 04:53:45,920 BUILDING UP A RESEARCH COMMUNITY 6419 04:53:45,920 --> 04:53:48,155 IS TRAINING EARLY STAGE 6420 04:53:48,155 --> 04:53:51,492 INVESTIGATORS AND PROVIDING 6421 04:53:51,492 --> 04:53:52,893 SUPPORT FOR CAREER DEVELOPMENT 6422 04:53:52,893 --> 04:53:59,133 OF VARIOUS AWARDS. 6423 04:53:59,133 --> 04:54:01,936 NOW INCLUDE CONTINUES TO EXPAND 6424 04:54:01,936 --> 04:54:03,671 ITS PRESENCE WITH THE DOWN 6425 04:54:03,671 --> 04:54:04,238 SYNDROME COMMUNITY THROUGH 6426 04:54:04,238 --> 04:54:08,476 VARIOUS DIFFERENT PARTNERSHIPS 6427 04:54:08,476 --> 04:54:09,510 WITH THE GLOBAL INTERNATIONAL 6428 04:54:09,510 --> 04:54:11,646 LEVEL AS WELL AS MORE LOCALLY. 6429 04:54:11,646 --> 04:54:14,482 AND WE WANT TO RECOGNIZE THE 6430 04:54:14,482 --> 04:54:17,351 IMPORTANCE OF FOSTERING 6431 04:54:17,351 --> 04:54:19,587 RELATIONSHIP WITH ADVOCACY 6432 04:54:19,587 --> 04:54:20,755 ORGANIZATIONS AND INDIVIDUALS 6433 04:54:20,755 --> 04:54:21,489 WITH DOWN SYNDROME AS WELL AS 6434 04:54:21,489 --> 04:54:22,456 THEIR FAMILIES. 6435 04:54:22,456 --> 04:54:24,125 THIS PROVIDES OPPORTUNITIES FOR 6436 04:54:24,125 --> 04:54:26,260 US TO NOT ONLY INCREASE 6437 04:54:26,260 --> 04:54:27,395 AWARENESS OF THE WORK WE'RE 6438 04:54:27,395 --> 04:54:30,531 DOING OF THE CLINICAL STUDIES IS 6439 04:54:30,531 --> 04:54:32,133 THAT HAVE AVAILABLE AND COULD 6440 04:54:32,133 --> 04:54:35,803 POTENTIALLY BE PARTICIPATE 6441 04:54:35,803 --> 04:54:37,405 INNING BUT WE CAN LEARN A LOT 6442 04:54:37,405 --> 04:54:40,141 FROM THEIR LIVED EXPERIENCES AS 6443 04:54:40,141 --> 04:54:40,741 WE HELP TO DEVELOP DIFFERENT 6444 04:54:40,741 --> 04:54:44,612 PROGRAMS. 6445 04:54:44,612 --> 04:54:48,149 THAT'S A CRITICAL COMPONENT OF 6446 04:54:48,149 --> 04:54:53,754 CONNECTING WITH THE COMMUNITY. 6447 04:54:53,754 --> 04:54:56,123 ONE OF THE OTHER ELEMENTS WE'RE 6448 04:54:56,123 --> 04:54:58,993 WORKING ON IS THINKING HOW TO 6449 04:54:58,993 --> 04:55:01,529 CONTINUE TO BOLSTER OUR 6450 04:55:01,529 --> 04:55:03,531 COMMUNICATIONS. 6451 04:55:03,531 --> 04:55:07,501 AND OVER THE NEXT 10 YEARS WE'RE 6452 04:55:07,501 --> 04:55:10,504 COMMITTING TO INCREASING OUR 6453 04:55:10,504 --> 04:55:11,639 EFFORTS AROUND INCREASING 6454 04:55:11,639 --> 04:55:13,741 EDUCATION AND AWARENESS OF THE 6455 04:55:13,741 --> 04:55:15,743 VARIOUS DIFFERENT EFFORTS THAT 6456 04:55:15,743 --> 04:55:17,078 ARE INVOLVED INCLUDE AS WELL AS 6457 04:55:17,078 --> 04:55:19,046 INCREASING THE VISIBILITY OF THE 6458 04:55:19,046 --> 04:55:23,284 PROGRAM OVER ALL AND A FUNDING 6459 04:55:23,284 --> 04:55:23,851 OPPORTUNITY ANNOUNCEMENT. 6460 04:55:23,851 --> 04:55:29,423 WE WANT TO MAKE SURE YOU'RE 6461 04:55:29,423 --> 04:55:30,157 AWARE OF POSSIBLE OPPORTUNITIES 6462 04:55:30,157 --> 04:55:33,394 TO APPLY FOR FUNDING AND SUPPORT 6463 04:55:33,394 --> 04:55:36,297 AND BUILD RELATIONSHIPS WITH THE 6464 04:55:36,297 --> 04:55:39,533 DOWN SYNDROME COMMUNITY. 6465 04:55:39,533 --> 04:55:41,369 AND THE INCLUDE PROGRAM WILL 6466 04:55:41,369 --> 04:55:43,204 HELP TO SHARE PROMISING FINDINGS 6467 04:55:43,204 --> 04:55:46,807 FROM STUDIES OVER THE YEARS OF 6468 04:55:46,807 --> 04:55:49,910 THE PROGRAM BEING IN EXISTENCE 6469 04:55:49,910 --> 04:55:51,879 WITH THE SCIENTIFIC COMMUNITY AS 6470 04:55:51,879 --> 04:55:52,446 WELL AS THE DOWN SYNDROME 6471 04:55:52,446 --> 04:55:53,013 COMMUNITY. 6472 04:55:53,013 --> 04:55:56,117 THIS IS THE RETURN OF AGGREGATE 6473 04:55:56,117 --> 04:55:59,253 RESULTS MAKING SURE THE PEOPLE 6474 04:55:59,253 --> 04:56:00,888 WHO PARTICIPATED IN THE STUDIES 6475 04:56:00,888 --> 04:56:03,524 ARE AWARE OF THE OUTCOMES. 6476 04:56:03,524 --> 04:56:05,393 THAT'S SOMETHING WE'VE BEEN 6477 04:56:05,393 --> 04:56:08,129 THINKING ABOUT MORE BROADLY AT 6478 04:56:08,129 --> 04:56:09,530 NIH IN RECENT YEARS. 6479 04:56:09,530 --> 04:56:14,335 OKAY. 6480 04:56:14,335 --> 04:56:15,503 THIS IS MY FINAL SLIDE EXCEPT 6481 04:56:15,503 --> 04:56:20,141 TAKING A MOMENT TO THANK MANY 6482 04:56:20,141 --> 04:56:22,743 PEOPLE BUT I WANT TO GIVE 6483 04:56:22,743 --> 04:56:24,211 EXAMPLES OF EXCITING NEW 6484 04:56:24,211 --> 04:56:30,217 RESEARCH HIGHLIGHTS HERE. 6485 04:56:30,217 --> 04:56:32,186 FINDINGS FROM AN INCLUDE STUDY 6486 04:56:32,186 --> 04:56:34,355 SHOW EVIDENCE OF JAK INHIBITION 6487 04:56:34,355 --> 04:56:35,990 FOR TREATMENT OF SKIN CONDITIONS 6488 04:56:35,990 --> 04:56:36,724 CAN IN DOWN SYNDROME. 6489 04:56:36,724 --> 04:56:39,960 SO I'M SURE ALL OF YOU ARE AWARE 6490 04:56:39,960 --> 04:56:46,133 JAK INHIBITORS REDUCE INTERFERON 6491 04:56:46,133 --> 04:56:48,936 MEDIATED INFLAMMATION AND THOSE 6492 04:56:48,936 --> 04:56:49,637 INDIVIDUALS WITH DOWN SYNDROME 6493 04:56:49,637 --> 04:56:51,338 HAVE SOME COMMON CONDITIONS THAT 6494 04:56:51,338 --> 04:56:53,207 ARE INTERFERON RELATED AND SO 6495 04:56:53,207 --> 04:56:57,211 THIS IS AN OPPORTUNITY TO 6496 04:56:57,211 --> 04:56:57,878 POTENTIALLY IDENTIFY THERAPEUTIC 6497 04:56:57,878 --> 04:57:04,585 TREATMENTS THERE. 6498 04:57:04,585 --> 04:57:07,555 AND A SINGLE CASE STUDY THAT I'M 6499 04:57:07,555 --> 04:57:09,323 AWARE OF WHERE THEY USE 6500 04:57:09,323 --> 04:57:12,159 LONG-TERM TREATMENT WITH JAK 6501 04:57:12,159 --> 04:57:14,662 INHIBITERS THAT HELP PROVIDE A 6502 04:57:14,662 --> 04:57:15,830 THERAPEUTIC BENEFIT FOR A 6503 04:57:15,830 --> 04:57:26,307 PATIENT WITH -- ALOE DIS -- 6504 04:57:38,619 --> 04:57:45,092 ALOPECIA ARNATA. 6505 04:57:45,092 --> 04:57:47,661 AND THE FINAL THING I'LL MENTION 6506 04:57:47,661 --> 04:57:52,666 IS ONE MORE STUDY THAT IN 6507 04:57:52,666 --> 04:57:54,802 CHILDREN WITH DOWN SYNDROME IN 6508 04:57:54,802 --> 04:57:56,470 CO-OCCURRING ADHD FOUND THAT 6509 04:57:56,470 --> 04:57:58,072 THOSE CHILDREN MAY BE MORE 6510 04:57:58,072 --> 04:58:01,308 SENSITIVE TO THE ADVERSE EFFECTS 6511 04:58:01,308 --> 04:58:04,144 OF A CNS STIMULANT USED TO TREAT 6512 04:58:04,144 --> 04:58:14,255 ADHD. 6513 04:58:17,191 --> 04:58:21,128 AND OPTIMAL EXPERIENCES THAN 6514 04:58:21,128 --> 04:58:23,898 CHILDREN WITHOUT AND SHOWED THE 6515 04:58:23,898 --> 04:58:25,766 DIVERSITY OF THE DIFFERENT TYPES 6516 04:58:25,766 --> 04:58:27,601 OF RESEARCH GOING ON WITHIN THE 6517 04:58:27,601 --> 04:58:37,878 INCLUDE PROGRAM. 6518 04:58:38,379 --> 04:58:43,417 AND THANK YOU FOR MAKING IT OUT 6519 04:58:43,417 --> 04:58:53,961 TO BETHESDA AND WE'RE DELIGHTED 6520 04:58:59,133 --> 04:59:01,335 SUCH A LARGE GROUP THOUGH IT'S 6521 04:59:01,335 --> 04:59:02,469 STARTED TO TRICKLE OUT AND A 6522 04:59:02,469 --> 04:59:05,172 LARGE GROUP WERE ABLE TO COME 6523 04:59:05,172 --> 04:59:09,610 HERE REPRESENTING PHYSICIANS, 6524 04:59:09,610 --> 04:59:14,815 RESEARCHERS, SELF-ADVOCATES AND 6525 04:59:14,815 --> 04:59:16,116 MEMBERS AND HOPE IT SERVED AS A 6526 04:59:16,116 --> 04:59:18,085 GREAT OPPORTUNITY TO CONNECT IN 6527 04:59:18,085 --> 04:59:20,654 PERSON AND HELP I THINK BOLSTER 6528 04:59:20,654 --> 04:59:22,523 AND FOSTER YOUR ENTHUSIASM FOR 6529 04:59:22,523 --> 04:59:23,958 THIS AREA OF RESEARCH AND I KNOW 6530 04:59:23,958 --> 04:59:25,559 THAT THE WORK YOU'RE DOING IS 6531 04:59:25,559 --> 04:59:30,030 REALLY CRITICAL TO HELPING 6532 04:59:30,030 --> 04:59:35,469 UNDERSTAND THE BIOLOGY OF DOWN 6533 04:59:35,469 --> 04:59:36,870 SYNDROME IN CO-OCCURRING 6534 04:59:36,870 --> 04:59:40,140 CONDITIONS AND ONE THING MY TEAM 6535 04:59:40,140 --> 04:59:43,277 WANTED ME TO CALL OUT IS THE 6536 04:59:43,277 --> 04:59:44,612 ENTHUSIASM OF THE GROUP FOR 6537 04:59:44,612 --> 04:59:46,714 CALLING OUT A PROSPECTIVE COHORT 6538 04:59:46,714 --> 04:59:48,282 TO UNDERSTAND AND BETTER STUDY 6539 04:59:48,282 --> 04:59:50,384 THOSE INDIVIDUALS WITH DOWN 6540 04:59:50,384 --> 04:59:51,418 SYNDROME AND THAT'S SOMETHING 6541 04:59:51,418 --> 04:59:54,388 THAT HAS BEEN ON THE BOOKS FOR A 6542 04:59:54,388 --> 04:59:57,224 LITTLE WHILE WE'VE BEEN THINKING 6543 04:59:57,224 --> 04:59:58,926 ABOUT WITH INCLUDE SINCE THE 6544 04:59:58,926 --> 05:00:00,561 EARLY DAYS AND ARE STARTING TO 6545 05:00:00,561 --> 05:00:04,632 SEE THAT ON THE HORIZON. 6546 05:00:04,632 --> 05:00:06,467 FINALLY, I WANT TO TAKE A MINUTE 6547 05:00:06,467 --> 05:00:09,870 TO THANK ALL OF THOSE 6548 05:00:09,870 --> 05:00:12,139 INDIVIDUALS WHO WORKED ON THE 6549 05:00:12,139 --> 05:00:13,607 INCLUDE MEETING PLANNING 6550 05:00:13,607 --> 05:00:13,974 COMMITTEE. 6551 05:00:13,974 --> 05:00:18,712 WITHOUT THEM THIS MEETING WOULD 6552 05:00:18,712 --> 05:00:23,050 NOT HAVE BEEN POSSIBLE AND MRAB 6553 05:00:23,050 --> 05:00:24,551 WE CAN TAKE A ROUND OF APPLAUSE 6554 05:00:24,551 --> 05:00:27,621 BECAUSE THIS IS A TREMENDOUS 6555 05:00:27,621 --> 05:00:27,988 AMOUNT OF WORK. 6556 05:00:27,988 --> 05:00:30,224 THANK YOU ALL FOR THE TIME AND 6557 05:00:30,224 --> 05:00:32,326 ENERGY AND EFFORT THAT WENT INTO 6558 05:00:32,326 --> 05:00:34,261 PLANNING SUCH A SUCCESSFUL 6559 05:00:34,261 --> 05:00:35,596 TWO-DAY EVENT AND WITH THAT I 6560 05:00:35,596 --> 05:00:36,930 WILL WRAP UP AND THANK YOU ALL 6561 05:00:36,930 --> 05:00:39,600 AGAIN FOR BEING HERE AND SAFE 6562 05:00:39,600 --> 05:00:49,743 TRAVELS.