1 00:00:05,200 --> 00:00:08,000 >>WELCOME TO TODAY'S WEBINAR 2 00:00:08,000 --> 00:00:09,440 FOR THE INCLUDE PROJECT. 3 00:00:09,440 --> 00:00:10,840 LET'S TALK ABOUT CLINICAL 4 00:00:10,840 --> 00:00:11,080 TRIALS. 5 00:00:11,080 --> 00:00:12,680 MY NAME IS ERIKA TARVER, WE'RE 6 00:00:12,680 --> 00:00:15,960 EXCITED TO HAVE YOU JOIN US 7 00:00:15,960 --> 00:00:16,520 TODAY. 8 00:00:16,520 --> 00:00:17,960 JUST A FEW HOUSEKEEPING RULES 9 00:00:17,960 --> 00:00:20,360 BEFORE I TURN IT OVER TO DR. 10 00:00:20,360 --> 00:00:22,640 LAURIE RYAN, IF YOU HAVE ANY 11 00:00:22,640 --> 00:00:24,600 QUESTIONS OR WOULD LIKE ANY 12 00:00:24,600 --> 00:00:25,840 QUESTIONS -- HAVE ANY QUESTIONS 13 00:00:25,840 --> 00:00:27,720 FOR ANY SPEAKERS, PLEASE SUBMIT 14 00:00:27,720 --> 00:00:31,000 THEM THROUGH THE Q&A OR THROUGH 15 00:00:31,000 --> 00:00:32,960 THE CHAT FUNCTION. 16 00:00:32,960 --> 00:00:34,040 WITHOUT FURTHER ADO I'LL TURN IT 17 00:00:34,040 --> 00:00:38,040 OVER TO MY COLLEAGUE, DR. LAURIE 18 00:00:38,040 --> 00:00:38,240 RYAN. 19 00:00:38,240 --> 00:00:39,680 >>THANK YOU, ERIKA. 20 00:00:39,680 --> 00:00:43,520 I'M WITH THE NATIONAL INSTITUTE 21 00:00:43,520 --> 00:00:48,480 ON AGING AND INCLUDE PROJECT. 22 00:00:48,480 --> 00:00:50,520 DR. PTOMEY IS ASSOCIATE 23 00:00:50,520 --> 00:00:52,480 PROFESSOR, DEPARTMENT OF 24 00:00:52,480 --> 00:00:57,600 INTERNAL MEDICINE, UNIVERSITY OF 25 00:00:57,600 --> 00:01:08,160 KANSAS SMELL CENTER, REGISTERED 26 00:01:08,680 --> 00:01:10,960 DIETITIAN, EXPERTISE 27 00:01:10,960 --> 00:01:14,160 DISABILITIES INCLUDING DOWN 28 00:01:14,160 --> 00:01:14,480 SYNDROME. 29 00:01:14,480 --> 00:01:18,000 DR. PTOMEY HAS RECEIVED FIVE NIH 30 00:01:18,000 --> 00:01:19,680 GRANTS AND PUBLISHED OVER 65 31 00:01:19,680 --> 00:01:22,080 PEER-REVIEWED ARTICLES. 32 00:01:22,080 --> 00:01:27,560 WELCOME, DR. PTOMEY. 33 00:01:27,560 --> 00:01:29,360 >>THANK YOU. 34 00:01:29,360 --> 00:01:30,960 THE BIG THING WE'RE GOING TO 35 00:01:30,960 --> 00:01:32,800 BE TALKING ABOUT TODAY IS 36 00:01:32,800 --> 00:01:33,640 CLINICAL TRIALS, WHAT THEY ARE, 37 00:01:33,640 --> 00:01:36,440 WHY YOU MAY OR MAY NOT WANT TO 38 00:01:36,440 --> 00:01:37,560 DO THEM, AND HOPEFULLY ANSWER 39 00:01:37,560 --> 00:01:40,680 ANY QUESTIONS YOU MIGHT HAVE 40 00:01:40,680 --> 00:01:41,440 ABOUT ENROLLING YOURSELF OR A 41 00:01:41,440 --> 00:01:42,520 LOVED ONE WITH DOWN SYNDROME. 42 00:01:42,520 --> 00:01:44,400 STARTING OFF WE'LL TALK ABOUT 43 00:01:44,400 --> 00:01:46,040 WHAT IS CLINICAL RESEARCH FIRST. 44 00:01:46,040 --> 00:01:47,760 WE'RE GOING TO GET INTO CLINICAL 45 00:01:47,760 --> 00:01:49,320 TRIALS BUT THAT'S -- THERE'S AN 46 00:01:49,320 --> 00:01:51,800 UMBRELLA TERM OVER EVERYTHING 47 00:01:51,800 --> 00:01:53,480 ELSE, CALLED CLINICAL RESEARCH 48 00:01:53,480 --> 00:01:54,800 THAT INCLUDES OBSERVATIONAL 49 00:01:54,800 --> 00:01:56,240 STUDIES AND CLINICAL TRIALS. 50 00:01:56,240 --> 00:01:57,120 WHEN SOMEONE SAYS RESEARCH 51 00:01:57,120 --> 00:01:58,080 THERE'S A LOT OF DIFFERENT 52 00:01:58,080 --> 00:01:59,640 THINGS THAT CAN BE TALKING 53 00:01:59,640 --> 00:01:59,920 ABOUT. 54 00:01:59,920 --> 00:02:01,640 IT CAN BE TALKING ABOUT CLINICAL 55 00:02:01,640 --> 00:02:03,600 RESEARCH, WHICH IS ANY KIND OF 56 00:02:03,600 --> 00:02:05,320 RESEARCH THAT INVOLVES PEOPLE. 57 00:02:05,320 --> 00:02:06,640 YOU MIGHT SOMETIMES HEAR PEOPLE 58 00:02:06,640 --> 00:02:09,480 TALK ABOUT BASIC RESEARCH OR 59 00:02:09,480 --> 00:02:10,680 BASIC SCIENCE, WHICH TYPICALLY 60 00:02:10,680 --> 00:02:13,120 INVOLVES ANIMALS OR CELLS OR 61 00:02:13,120 --> 00:02:14,960 OTHER THINGS THAT AREN'T PEOPLE. 62 00:02:14,960 --> 00:02:16,720 WITHIN THAT CLINICAL RESEARCH 63 00:02:16,720 --> 00:02:19,760 UMBRELLA WE HAVE OBSERVATIONAL 64 00:02:19,760 --> 00:02:21,200 STUDIES, SO THIS INCLUDE 65 00:02:21,200 --> 00:02:21,840 EPIDEMIOLOGICAL STUDY WHICH 66 00:02:21,840 --> 00:02:24,040 IMPROVES THE UNDERSTANDING OF 67 00:02:24,040 --> 00:02:27,240 PATTERNS, CAUSES, EFFECTS OF 68 00:02:27,240 --> 00:02:27,480 DISEASE. 69 00:02:27,480 --> 00:02:29,000 HEALTH AND DISEASE. 70 00:02:29,000 --> 00:02:31,640 WE ALSO HAVE -- CAN YOU DO 71 00:02:31,640 --> 00:02:32,480 CROSS-SECTIONAL STUDY, YOU MIGHT 72 00:02:32,480 --> 00:02:34,480 HAVE SOMEONE LOOK AT YOU AT ONE 73 00:02:34,480 --> 00:02:37,040 POINT IN TIME, MAYBE LOOK AT 74 00:02:37,040 --> 00:02:37,880 YOUR HEALTH, DIFFERENT OUTCOMES, 75 00:02:37,880 --> 00:02:41,480 AND THEY USE THAT TO BE ABLE TO 76 00:02:41,480 --> 00:02:43,800 HELP IDENTIFY HOW COMMON A 77 00:02:43,800 --> 00:02:45,200 HEALTH CONDITION MIGHT BE, 78 00:02:45,200 --> 00:02:47,320 FACTORS ASSOCIATED WITH IS, AND 79 00:02:47,320 --> 00:02:48,400 A LONGITUDINAL COHORT STUDY 80 00:02:48,400 --> 00:02:51,360 WHICH A LOT OF TIMES YOU COME IN 81 00:02:51,360 --> 00:02:52,120 MULTIPLE TIMES. 82 00:02:52,120 --> 00:02:53,200 SOMEONE WILL SEE WHERE ARE YOU 83 00:02:53,200 --> 00:02:55,160 AT THAT TIME AND CAN HELP TO 84 00:02:55,160 --> 00:02:56,160 DETERMINE LIKE WHEN YOU DEVELOP 85 00:02:56,160 --> 00:02:58,200 A DISEASE AND WHAT MIGHT BE 86 00:02:58,200 --> 00:02:59,000 RELATED TO THAT. 87 00:02:59,000 --> 00:03:00,640 ON THIS OTHER SIDE WE HAVE 88 00:03:00,640 --> 00:03:01,400 CLINICAL TRIALS. 89 00:03:01,400 --> 00:03:02,480 THAT'S WHERE WE'RE REALLY GOING 90 00:03:02,480 --> 00:03:07,000 TO SPEND MOST OF OUR TIME 91 00:03:07,000 --> 00:03:07,760 TALKING TODAY. 92 00:03:07,760 --> 00:03:10,600 SO, CLINICAL TRIALS ARE REALLY 93 00:03:10,600 --> 00:03:13,680 THE HEART OF MEDICAL ADVANCES. 94 00:03:13,680 --> 00:03:15,880 AND WHAT THEY ARE ARE LOOKING AT 95 00:03:15,880 --> 00:03:17,720 NEW WAYS TO PREVENT, DETECT, OR 96 00:03:17,720 --> 00:03:18,280 TREAT DISEASES. 97 00:03:18,280 --> 00:03:19,480 A CLINICAL TRIAL IS WHEN YOU 98 00:03:19,480 --> 00:03:21,240 COME IN AND YOU'RE ASSIGNED TO 99 00:03:21,240 --> 00:03:22,080 DO SOMETHING. 100 00:03:22,080 --> 00:03:23,320 YOU HAVE TO CHANGE SOMETHING. 101 00:03:23,320 --> 00:03:26,240 WE LOOK AT HOW THAT CHANGE 102 00:03:26,240 --> 00:03:32,400 AFFECTS YOUR HEALTH OVER TIME. 103 00:03:32,400 --> 00:03:33,800 WE THINK ABOUT DRUG TRIALS, 104 00:03:33,800 --> 00:03:35,120 PEOPLE WHO TRIED NEW DRUGS TO 105 00:03:35,120 --> 00:03:36,520 HELP PREVENT A DISEASE OR 106 00:03:36,520 --> 00:03:38,000 RECENTLY WITH ALL THE VACCINE 107 00:03:38,000 --> 00:03:38,960 TRIALS WHERE VACCINES WERE 108 00:03:38,960 --> 00:03:41,360 TESTED TO SEE IF THEY WORK. 109 00:03:41,360 --> 00:03:42,680 CLINICAL TRIALS ARE NOT ALWAYS 110 00:03:42,680 --> 00:03:43,840 DRUG TRIALS THOUGH. 111 00:03:43,840 --> 00:03:45,960 FOR EXAMPLE, A LOT OF RESEARCH I 112 00:03:45,960 --> 00:03:48,120 DO, A CLINICAL TRIAL LOOKS MORE 113 00:03:48,120 --> 00:03:49,360 LIKE THIS, AN EXERCISE TRIAL 114 00:03:49,360 --> 00:03:51,880 WHERE WE SEE HOW CAN WE GET 115 00:03:51,880 --> 00:03:54,920 PEOPLE TO EXERCISE OR HELP 116 00:03:54,920 --> 00:03:57,120 CHANGE HEALTH BEHAVIORS TO MAKE 117 00:03:57,120 --> 00:03:58,120 A DIFFERENCE. 118 00:03:58,120 --> 00:03:59,040 SO CLINICAL TRIALS EXAMINE A LOT 119 00:03:59,040 --> 00:04:00,520 OF THINGS. 120 00:04:00,520 --> 00:04:02,240 OF COURSE, THEY EXAMINE NEW 121 00:04:02,240 --> 00:04:04,000 DRUGS, COMBINATION OF DRUGS FOR 122 00:04:04,000 --> 00:04:05,080 DIFFERENT USES, YOU CAN ALSO 123 00:04:05,080 --> 00:04:07,560 LOOK AT NEW WAYS OF DOING 124 00:04:07,560 --> 00:04:09,520 SURGERY, USE OF NEW MEDICAL 125 00:04:09,520 --> 00:04:11,840 DEVICE, NEW WAYS TO CHANGE YOUR 126 00:04:11,840 --> 00:04:13,800 BEHAVIOR TO IMPROVE HEALTH, LIKE 127 00:04:13,800 --> 00:04:16,080 PHYSICAL ACTIVITY, OR CHANGING 128 00:04:16,080 --> 00:04:17,960 YOUR DIET OR TRYING TO HELP YOU 129 00:04:17,960 --> 00:04:18,520 SLEEP BETTER. 130 00:04:18,520 --> 00:04:20,240 AND YOU CAN LOOK AT NEW WAYS TO 131 00:04:20,240 --> 00:04:24,840 IMPROVE THE QUALITY OF LIFE FOR 132 00:04:24,840 --> 00:04:27,480 PEOPLE, WITH ACUTE OR CHRONIC 133 00:04:27,480 --> 00:04:28,680 ILLNESS, NOT JUSTING A DRUG BUT 134 00:04:28,680 --> 00:04:30,880 DOING OTHER THINGS. 135 00:04:30,880 --> 00:04:34,760 THERE'S A WIDE SPECTRUM OF 136 00:04:34,760 --> 00:04:35,360 CLINICAL TRIALS. 137 00:04:35,360 --> 00:04:37,320 I THINK THE OTHER BIG QUESTION 138 00:04:37,320 --> 00:04:39,000 IS WHY WOULD SOMEONE WANT DO A 139 00:04:39,000 --> 00:04:39,800 CLINICAL TRIAL? 140 00:04:39,800 --> 00:04:41,160 WHY WOULD YOU WANT TO DEVOTE 141 00:04:41,160 --> 00:04:41,880 YOUR TIME AND ENERGY? 142 00:04:41,880 --> 00:04:43,640 THERE'S A LOT OF REALLY GOOD 143 00:04:43,640 --> 00:04:43,880 REASONS. 144 00:04:43,880 --> 00:04:47,480 ONE, YOU CAN BE SOMEONE WHO 145 00:04:47,480 --> 00:04:50,040 HELPS CONTRIBUTE TO MOVING 146 00:04:50,040 --> 00:04:51,480 SCIENCE FORWARD WHICH MIGHT HELP 147 00:04:51,480 --> 00:04:52,760 YOURSELF AND OTHERS. 148 00:04:52,760 --> 00:04:54,640 THERE'S THE POSSIBILITY OF 149 00:04:54,640 --> 00:04:56,440 RECEIVING NEWEST TREATMENT. 150 00:04:56,440 --> 00:04:58,240 ESPECIALLY WITH DRUG TRIALS 151 00:04:58,240 --> 00:05:03,040 YOU'LL BE ABLE TO GET 152 00:05:03,040 --> 00:05:03,640 STATE-OF-THE-ART DRUGS BEFORE 153 00:05:03,640 --> 00:05:06,760 THEY ARE AVAILABLE TO THE 154 00:05:06,760 --> 00:05:08,760 POPULATION. 155 00:05:08,760 --> 00:05:10,320 THERE'S THE CHANCE OF IMPROVING 156 00:05:10,320 --> 00:05:11,160 YOUR HEALTH. 157 00:05:11,160 --> 00:05:14,800 CLINICAL TRIALS ARE ONE OF THE 158 00:05:14,800 --> 00:05:16,000 ONLY WAYS FOR RESEARCHERS TO 159 00:05:16,000 --> 00:05:17,000 FIND TREATMENT FOR YOU AND 160 00:05:17,000 --> 00:05:17,240 OTHERS. 161 00:05:17,240 --> 00:05:20,960 AFTER A CLINICAL TRIAL WHEN WE 162 00:05:20,960 --> 00:05:22,920 FIND GOOD THINGS IN RESEARCH WE 163 00:05:22,920 --> 00:05:25,080 PUT THEM IN PRACTICE, HOW 164 00:05:25,080 --> 00:05:25,880 DOCTORS GET RECOMMENDATIONS HOW 165 00:05:25,880 --> 00:05:28,080 TO HELP YOU TREAT A DISEASE YOU 166 00:05:28,080 --> 00:05:29,360 MIGHT HAVE OR DIFFERENT 167 00:05:29,360 --> 00:05:30,360 CONDITION. 168 00:05:30,360 --> 00:05:31,320 HOW WE KNOW THERE'S NEW DRUGS 169 00:05:31,320 --> 00:05:33,840 THAT ARE SAFE AND EFFECTIVE FOR 170 00:05:33,840 --> 00:05:36,280 TREATING DISEASES. 171 00:05:36,280 --> 00:05:40,720 IT'S HOW WE LEARN WHAT HELPS 172 00:05:40,720 --> 00:05:41,400 MAKE PEOPLE HEALTHIEST. 173 00:05:41,400 --> 00:05:43,480 SO THEN WHY SHOULD YOU OR YOUR 174 00:05:43,480 --> 00:05:45,560 LOVED ONE WITH DOWN SYNDROME 175 00:05:45,560 --> 00:05:48,000 JOIN THE RESEARCH? 176 00:05:48,000 --> 00:05:49,720 THIS IS REALLY IMPORTANT BECAUSE 177 00:05:49,720 --> 00:05:50,480 TRADITIONALLY INDIVIDUALS WITH 178 00:05:50,480 --> 00:05:52,720 DOWN SYNDROME HAVE BEEN EXCLUDED 179 00:05:52,720 --> 00:05:53,880 FROM RESEARCH. 180 00:05:53,880 --> 00:05:55,720 WHEN DOING A RESEARCH STUDY 181 00:05:55,720 --> 00:05:59,280 THERE'S AN INCLUSION AND 182 00:05:59,280 --> 00:06:00,240 EXCLUSION CRITERIA, THINGS WE 183 00:06:00,240 --> 00:06:01,320 MUST HAVE TO ENROLL IN THE STUDY 184 00:06:01,320 --> 00:06:02,640 OR IF YOU HAVE SOMETHING YOU 185 00:06:02,640 --> 00:06:06,280 CAN'T BE IN THE STUDY. 186 00:06:06,280 --> 00:06:08,120 TRADITIONALLY DOWN SYNDROME HAS 187 00:06:08,120 --> 00:06:09,400 BEEN EXCLUSION CRITERIA, WE 188 00:06:09,400 --> 00:06:10,520 DON'T KNOW IF SOMETHING THAT 189 00:06:10,520 --> 00:06:13,000 WORKS IN THE GENERAL POPULATION 190 00:06:13,000 --> 00:06:16,120 WILL WORK IN INDIVIDUALS WITH 191 00:06:16,120 --> 00:06:19,760 DOWN SYNDROME. 192 00:06:19,760 --> 00:06:21,400 STUDIES HAVE BEEN FOCUSED ON 193 00:06:21,400 --> 00:06:23,320 SPECIFIC ISSUES LIKE REGRESSION, 194 00:06:23,320 --> 00:06:25,520 AGING, ALZHEIMER'S. 195 00:06:25,520 --> 00:06:26,840 ENROLLING IN RESEARCH STUDIES 196 00:06:26,840 --> 00:06:28,160 ALLOWS RESEARCHERS AND DOCTORS 197 00:06:28,160 --> 00:06:30,040 TO PROVIDE BETTER HEALTH CARE 198 00:06:30,040 --> 00:06:31,240 FOR INDIVIDUALS WITH DOWN 199 00:06:31,240 --> 00:06:32,520 SYNDROME AND HELP PREVENT OR 200 00:06:32,520 --> 00:06:35,920 TREAT CONDITIONS RELATED TO DOWN 201 00:06:35,920 --> 00:06:36,200 SYNDROME. 202 00:06:36,200 --> 00:06:37,560 THIS IS REALLY IMPORTANT TO 203 00:06:37,560 --> 00:06:39,000 CONTINUE TO IMPROVE QUALITY OF 204 00:06:39,000 --> 00:06:43,280 LIFE MAKING SURE PEOPLE LIVE 205 00:06:43,280 --> 00:06:43,560 LONGER. 206 00:06:43,560 --> 00:06:46,000 SO HOW DOES THE CLINICAL TRIAL 207 00:06:46,000 --> 00:06:46,880 PROCESS WORK? 208 00:06:46,880 --> 00:06:49,400 SOMETIMES YOU'VE HEARD PEOPLE 209 00:06:49,400 --> 00:06:51,160 RAMBLING THINGS ABOUT A PHASE 3 210 00:06:51,160 --> 00:06:52,800 CLINICAL TRIAL OR PHASE 2, 211 00:06:52,800 --> 00:06:53,440 ESPECIALLY IN THE LAST COUPLE 212 00:06:53,440 --> 00:06:58,040 YEARS WHERE THEY HAVE BEEN DOING 213 00:06:58,040 --> 00:07:00,680 LARGE VACCINE TRIALS. 214 00:07:00,680 --> 00:07:02,480 BUT THE CLINICAL PROCESS IS 215 00:07:02,480 --> 00:07:03,360 DIFFERENT. 216 00:07:03,360 --> 00:07:05,080 WE'LL GO THROUGH THOSE. 217 00:07:05,080 --> 00:07:09,520 IN CLINICAL TRIALS, THIS IS MORE 218 00:07:09,520 --> 00:07:11,800 THE DRUG TRIALS. 219 00:07:11,800 --> 00:07:15,320 YOU DO PRE-CLINICAL RESEARCH, 220 00:07:15,320 --> 00:07:16,400 TYPICALLY CELL MODELS OR ANIMAL 221 00:07:16,400 --> 00:07:18,160 MODEL MAL MODELS. 222 00:07:18,160 --> 00:07:21,320 ONCE YOU HAVE AN IDEAS AND WANT 223 00:07:21,320 --> 00:07:23,440 TO TEST IN HUMANS, YOU CAN DO A 224 00:07:23,440 --> 00:07:25,240 PHASE 1 CLINICAL TRIAL, A SMALL 225 00:07:25,240 --> 00:07:28,000 TRIAL IN ABOUT 20 TO 80 PEOPLE. 226 00:07:28,000 --> 00:07:29,520 YOU JUST GIVE THEM THE DRUG THE 227 00:07:29,520 --> 00:07:31,640 FIRST TIME AND LEARN IS IT SAFE, 228 00:07:31,640 --> 00:07:34,360 ARE THERE HORRIBLE SIDE EFFECTS. 229 00:07:34,360 --> 00:07:35,440 ONCE IT'S SHOWN TO BE PRETTY 230 00:07:35,440 --> 00:07:39,000 SAFE, YOU GO TO A PHASE 2 TRIAL, 231 00:07:39,000 --> 00:07:41,040 WHERE THOSE ARE GOING TO BE 232 00:07:41,040 --> 00:07:43,360 BETWEEN 100 AND 300 PEOPLE. 233 00:07:43,360 --> 00:07:44,720 THAT'S NOW SOMETIMES DONE A 234 00:07:44,720 --> 00:07:46,440 LITTLE BIT LONGER, YOU ACTUALLY 235 00:07:46,440 --> 00:07:47,640 START TO LOOK, OKAY, DOES THIS 236 00:07:47,640 --> 00:07:49,080 DRUG WORK AND DO WHAT IT'S 237 00:07:49,080 --> 00:07:50,280 SUPPOSED TO DO. 238 00:07:50,280 --> 00:07:52,000 ALSO YOU CONTINUE TO TEST. 239 00:07:52,000 --> 00:07:54,120 IS IT SAFE? 240 00:07:54,120 --> 00:07:56,280 ARE THERE LONGTIME SIDE EFFECTS? 241 00:07:56,280 --> 00:07:57,640 ONCE WE'VE SEEN THIS SEEMS DO 242 00:07:57,640 --> 00:08:00,200 WHAT IT'S SUPPOSED TO BE AND BE 243 00:08:00,200 --> 00:08:02,280 PRETTY SAFE WE MOVE TO PHASE 3 244 00:08:02,280 --> 00:08:03,440 CLINICAL TRIALS. 245 00:08:03,440 --> 00:08:05,800 SOME BIG ONES WE HEAR ABOUT IN 246 00:08:05,800 --> 00:08:08,640 THE NEWS, SO THESE ARE ABOUT 1 247 00:08:08,640 --> 00:08:10,520 THROUGH TO 3,000 PARTICIPANTS, A 248 00:08:10,520 --> 00:08:12,160 LOT OF TIMES NATIONALLY AT 249 00:08:12,160 --> 00:08:16,000 MULTIPLE SITES, ALL OVER THE 250 00:08:16,000 --> 00:08:16,320 U.S. 251 00:08:16,320 --> 00:08:17,880 THIS IS REALLY WHEN THE DRUG IS 252 00:08:17,880 --> 00:08:20,560 GIVEN TO A LOT OF PEOPLE TO 253 00:08:20,560 --> 00:08:21,720 CONFIRM IT DOES WORK, TO DO WHAT 254 00:08:21,720 --> 00:08:24,080 IT'S SUPPOSED TO DO. 255 00:08:24,080 --> 00:08:25,360 WE MONITOR SIDE EFFECTS, AND WE 256 00:08:25,360 --> 00:08:27,040 COMPARE TO MAKE SURE IT'S BETTER 257 00:08:27,040 --> 00:08:28,240 THAN MAYBE THE STANDARD 258 00:08:28,240 --> 00:08:29,000 TREATMENT OR WHATEVER OTHER 259 00:08:29,000 --> 00:08:31,000 DRUGS COULD HAVE BEEN OUT THERE 260 00:08:31,000 --> 00:08:32,200 AT THE TIME. 261 00:08:32,200 --> 00:08:34,040 AFTER THE RESULTS GO THROUGH, A 262 00:08:34,040 --> 00:08:35,360 DRUG GOES TO FDA REVIEW WHERE 263 00:08:35,360 --> 00:08:38,040 THEY GO THROUGH ALL THE RESULTS 264 00:08:38,040 --> 00:08:40,680 IN THE STUDY, CONFIRM ITS SAFETY 265 00:08:40,680 --> 00:08:41,680 AND EFFECTIVENESS, AND TYPICALLY 266 00:08:41,680 --> 00:08:44,880 IT GETS APPROVED OR NOT 267 00:08:44,880 --> 00:08:45,440 APPROVED. 268 00:08:45,440 --> 00:08:48,280 ONCE APPROVED, STAGE 4, WHERE 269 00:08:48,280 --> 00:08:49,720 WE'RE CONTINUOUSLY WATCHING IT, 270 00:08:49,720 --> 00:08:50,960 MONITORING SAFETY, LOOKING AT 271 00:08:50,960 --> 00:08:53,840 HOW IT'S WORKING, WHAT ARE 272 00:08:53,840 --> 00:08:54,320 BENEFITS, SIDE EFFECTS. 273 00:08:54,320 --> 00:08:57,800 A LOT OF TIMES IN PHASE 4 TRIALS 274 00:08:57,800 --> 00:09:01,880 WE'LL SEE A DRUG PRESCRIBED FOR 275 00:09:01,880 --> 00:09:03,840 ONE THING, MAYBE PRESCRIBED TO 276 00:09:03,840 --> 00:09:06,680 HELP SEIZURE CONTROL, WE START 277 00:09:06,680 --> 00:09:08,560 TO SEE SIDE EFFECTS MAYBE 278 00:09:08,560 --> 00:09:10,760 HELPING PEOPLE SLEEP BETTER OR 279 00:09:10,760 --> 00:09:13,440 DO SOME OTHER THINGS. 280 00:09:13,440 --> 00:09:15,320 SO WE'LL START A NEW TRIAL, DOES 281 00:09:15,320 --> 00:09:16,880 THIS DRUG ACTUALLY WORK FOR THAT 282 00:09:16,880 --> 00:09:17,960 CONDITION AS WELL? 283 00:09:17,960 --> 00:09:23,560 AND IT STARTS THE CYCLE OVER. 284 00:09:23,560 --> 00:09:24,520 BEHAVIORAL RESEARCH IS 285 00:09:24,520 --> 00:09:24,800 DIFFERENT. 286 00:09:24,800 --> 00:09:27,480 TYPICALLY YOU START WITH BASIC 287 00:09:27,480 --> 00:09:27,720 RESEARCH. 288 00:09:27,720 --> 00:09:30,000 I'M GOING TO TALK ABOUT MY OWN 289 00:09:30,000 --> 00:09:32,040 EXPERIENCE SINCE I'M A 290 00:09:32,040 --> 00:09:34,520 BEHAVIORAL RESEARCHER, PHYSICAL 291 00:09:34,520 --> 00:09:34,880 ACTIVITY. 292 00:09:34,880 --> 00:09:36,520 FOR EXAMPLE, BASIC RESEARCH HAS 293 00:09:36,520 --> 00:09:38,600 SHOWN PHYSICAL ACTIVITY IS GOOD. 294 00:09:38,600 --> 00:09:40,800 AND WE NEED TO FIND WAYS TO HELP 295 00:09:40,800 --> 00:09:42,280 PEOPLE GET MORE PHYSICAL 296 00:09:42,280 --> 00:09:42,840 ACTIVITY IN. 297 00:09:42,840 --> 00:09:45,160 SO WE WANT TO DEVELOP A PHYSICAL 298 00:09:45,160 --> 00:09:46,240 ACTIVITY INTERVENTION THAT 299 00:09:46,240 --> 00:09:47,840 PEOPLE WILL FOLLOW AND INCREASE 300 00:09:47,840 --> 00:09:48,880 THEIR PHYSICAL ACTIVITY, AND WE 301 00:09:48,880 --> 00:09:51,720 CAN SEE DOES IT DO ALL THESE 302 00:09:51,720 --> 00:09:53,480 GOOD THINGS. 303 00:09:53,480 --> 00:09:55,480 WE MIGHT DO STAGE 1 RESEARCH 304 00:09:55,480 --> 00:09:56,760 FIRST, START TO DEVELOP 305 00:09:56,760 --> 00:09:57,720 INTERVENTION, IT COULD BE 306 00:09:57,720 --> 00:10:02,040 TALKING TO INDIVIDUALS TO SEE 307 00:10:02,040 --> 00:10:03,120 BARRIERS AND SUPPORTS TO 308 00:10:03,120 --> 00:10:03,520 PHYSICAL ACTIVITY. 309 00:10:03,520 --> 00:10:05,400 IT MIGHT BE LOOKING AT 310 00:10:05,400 --> 00:10:06,440 INTERVENTIONS THAT ALREADY EXIST 311 00:10:06,440 --> 00:10:08,600 AND MODIFYING. 312 00:10:08,600 --> 00:10:11,600 FOR EXAMPLE, MAYBE TAKING 313 00:10:11,600 --> 00:10:13,440 GENERAL POPULATION AND REFINING 314 00:10:13,440 --> 00:10:15,400 SPECIFIC FOR THE DOWN SYNDROME 315 00:10:15,400 --> 00:10:15,960 POPULATION. 316 00:10:15,960 --> 00:10:23,080 AND KIND OF CREATING A GENERAL 317 00:10:23,080 --> 00:10:23,960 TEMPLATE. 318 00:10:23,960 --> 00:10:26,240 STAGE 2 RESEARCH TESTS DOES THIS 319 00:10:26,240 --> 00:10:29,200 WORK, IN A CONTROLLED SETTING. 320 00:10:29,200 --> 00:10:31,520 THESE ARE DONE AT MEDICAL 321 00:10:31,520 --> 00:10:32,320 CENTERS, CLOSELY MONITORED. 322 00:10:32,320 --> 00:10:34,600 A LOT OF TIMES RESEARCH STAFF 323 00:10:34,600 --> 00:10:35,920 WILL LEAD THE INTERVENTION. 324 00:10:35,920 --> 00:10:38,200 YOU'LL COME IN FOR LAB-BASED 325 00:10:38,200 --> 00:10:47,640 TESTING IN THE MEDICAL CENTER. 326 00:10:47,640 --> 00:10:49,920 IT'S TIGHTLY, TIGHTLY 327 00:10:49,920 --> 00:10:50,240 CONTROLLED. 328 00:10:50,240 --> 00:10:51,600 ONCE IT'S WORKING WE DONE TO 329 00:10:51,600 --> 00:10:52,800 STAGE 3 IN COMMUNITY CENTERS. 330 00:10:52,800 --> 00:10:55,280 LET'S SAY WE DEVELOPED A 331 00:10:55,280 --> 00:10:57,400 PHYSICAL ACTIVITY INTERVENTION, 332 00:10:57,400 --> 00:10:59,040 EXCITED, HAVE SHOWN IF WE 333 00:10:59,040 --> 00:11:04,280 DELIVER IN RESEARCH LAB IT SEEMS 334 00:11:04,280 --> 00:11:07,280 TO WORK. 335 00:11:07,280 --> 00:11:08,520 NOW WE'LL HAVE SPECIAL OLYMPICS 336 00:11:08,520 --> 00:11:10,080 DELIVER THIS, IN THE SMALL 337 00:11:10,080 --> 00:11:11,160 AMOUNT OF PEOPLE TESTING THIS 338 00:11:11,160 --> 00:11:13,360 DOES IT SEEM TO WORK? 339 00:11:13,360 --> 00:11:15,560 WE SEE IT DOES, THEY ARE GETTING 340 00:11:15,560 --> 00:11:16,640 MORE ACTIVITY IN. 341 00:11:16,640 --> 00:11:19,080 YOU MOVE TO STAGE 4, 342 00:11:19,080 --> 00:11:19,960 EFFECTIVENESS, WHERE WE'LL 343 00:11:19,960 --> 00:11:23,160 COMPARE AGAINST THE STANDARD OF 344 00:11:23,160 --> 00:11:23,440 TREATMENT. 345 00:11:23,440 --> 00:11:24,360 MAYBE SPECIAL OLYMPICS HAD BEEN 346 00:11:24,360 --> 00:11:25,680 DOING ONE PROGRAM, NOW THERE'S A 347 00:11:25,680 --> 00:11:30,880 NEW ONE THAT MIGHT BE BETTER. 348 00:11:30,880 --> 00:11:32,760 WE'LL MAYBE CREATE A RANDOMIZED 349 00:11:32,760 --> 00:11:34,000 TRIAL, RANDOMIZED TO DO THE OLD 350 00:11:34,000 --> 00:11:35,000 PROGRAM OR NEW ONE. 351 00:11:35,000 --> 00:11:38,920 WE SEE DOES THIS WORK BETTER? 352 00:11:38,920 --> 00:11:40,160 WE MOVE INTO IMPLEMENTATION 353 00:11:40,160 --> 00:11:45,760 DISSEMINATION WHERE WE MAKE THE 354 00:11:45,760 --> 00:11:47,200 PHYSICAL ACTIVITY INTERVENTION, 355 00:11:47,200 --> 00:11:48,320 WHATEVER BEHAVIOR, STANDARD OF 356 00:11:48,320 --> 00:11:49,800 CARE, WORK TO INCORPORATE IT 357 00:11:49,800 --> 00:11:54,200 INTO THE DIFFERENT COMMUNITY 358 00:11:54,200 --> 00:11:55,960 AGENCIES, HOSPITALS, ACROSS KIND 359 00:11:55,960 --> 00:11:57,720 OF THE NATION, INCORPORATING 360 00:11:57,720 --> 00:11:59,440 INTO POLICY AND GETTING IT OUT 361 00:11:59,440 --> 00:12:00,560 THERE FOR AS MANY PEOPLE AS 362 00:12:00,560 --> 00:12:01,320 POSSIBLE. 363 00:12:01,320 --> 00:12:03,280 ONE OF THE GOOD EXAMPLES IS THAT 364 00:12:03,280 --> 00:12:06,600 YOU'VE HEARD OF THE DIABETES 365 00:12:06,600 --> 00:12:07,040 PREVENTION PROGRAM. 366 00:12:07,040 --> 00:12:09,680 THIS WAS LOOKING TO SEE CAN WE 367 00:12:09,680 --> 00:12:10,960 PREVENT TYPE 2 DIABETES. 368 00:12:10,960 --> 00:12:13,080 NOW IT'S A POLICY AND THERE'S 369 00:12:13,080 --> 00:12:13,960 PEOPLE ACROSS THE NATION 370 00:12:13,960 --> 00:12:16,000 EVERYWHERE THAT CAN GET APPROVED 371 00:12:16,000 --> 00:12:17,880 TO DELIVER THIS. 372 00:12:17,880 --> 00:12:22,160 AND MAKING IT REALLY ACCESSIBLE. 373 00:12:22,160 --> 00:12:24,000 SO, ONE THING YOU MIGHT BE 374 00:12:24,000 --> 00:12:26,960 ASKING, ARE CLINICAL TRIALS 375 00:12:26,960 --> 00:12:27,160 SAFE? 376 00:12:27,160 --> 00:12:28,800 AND THE ANSWER IS YES AND NO, 377 00:12:28,800 --> 00:12:32,080 BUT FOR THE MOST PART YES. 378 00:12:32,080 --> 00:12:35,840 THERE ARE MANY ETHICAL 379 00:12:35,840 --> 00:12:36,840 GUIDELINES AND PROCEDURES IN 380 00:12:36,840 --> 00:12:38,120 EFFECT TO PROTECT INDIVIDUALS. 381 00:12:38,120 --> 00:12:46,680 ALMOST ALL ARE APPROVED AND 382 00:12:46,680 --> 00:12:48,120 MONITORED BY AN INTUITIONAL 383 00:12:48,120 --> 00:12:50,160 REVIEW BOARD, TO ENSURE THAT THE 384 00:12:50,160 --> 00:12:53,360 RISK OF THE STUDY IS MINIMAL 385 00:12:53,360 --> 00:12:53,840 COMPARED WITH BENEFITS. 386 00:12:53,840 --> 00:12:56,960 A LOT OF TIMES A BENEFIT/RISK 387 00:12:56,960 --> 00:12:57,160 RATIO. 388 00:12:57,160 --> 00:12:59,360 IF WE SEE SOMETHING WITH A LOT 389 00:12:59,360 --> 00:13:02,400 OF RISK AND VERY LITTLE BENEFIT 390 00:13:02,400 --> 00:13:04,320 IT'S PROBABLY NOT GOING TO GET 391 00:13:04,320 --> 00:13:04,600 APPROVED. 392 00:13:04,600 --> 00:13:08,360 THIS BOARD IS MADE UP OF 393 00:13:08,360 --> 00:13:08,800 DOCTORS, SCIENTISTS, 394 00:13:08,800 --> 00:13:10,440 STATISTICIANS, EVEN MEMBERS OF 395 00:13:10,440 --> 00:13:12,720 THE COMMUNITY WHO GIVE INPUT, 396 00:13:12,720 --> 00:13:13,440 DOES THIS SEEM SOMETHING SAFE, 397 00:13:13,440 --> 00:13:17,000 IT'S OKAY TO HAVE PEOPLE DO? 398 00:13:17,000 --> 00:13:19,200 THESE IRBs GIVE EXTRA 399 00:13:19,200 --> 00:13:20,040 PROTECTION WHEN RESEARCH 400 00:13:20,040 --> 00:13:21,520 INCLUDES INDIVIDUALS WITH DOWN 401 00:13:21,520 --> 00:13:21,760 SYNDROME. 402 00:13:21,760 --> 00:13:23,520 IT'S DONE TO MAKE SURE THEY ARE 403 00:13:23,520 --> 00:13:25,160 NOT BEING TAKEN ADVANTAGE OF AND 404 00:13:25,160 --> 00:13:28,760 THEIR HEALTH AND SAFETY IS PUT 405 00:13:28,760 --> 00:13:30,320 VERY HIGH. 406 00:13:30,320 --> 00:13:31,840 SO, THE OTHER THING, RESEARCHERS 407 00:13:31,840 --> 00:13:33,360 ARE REQUIRED TO TELL YOU ALL OF 408 00:13:33,360 --> 00:13:35,560 THE RISK OF A STUDY BEFORE YOU 409 00:13:35,560 --> 00:13:35,840 ENROLL. 410 00:13:35,840 --> 00:13:37,080 THEY WILL ALSO TELL YOU HOW THEY 411 00:13:37,080 --> 00:13:39,840 ARE GOING TO TRY TO PROTECT YOU 412 00:13:39,840 --> 00:13:40,240 FROM RISKS. 413 00:13:40,240 --> 00:13:41,800 AND THEY HAVE TO KEEP YOU 414 00:13:41,800 --> 00:13:43,440 UPDATED IF ANY OF THOSE RISKS 415 00:13:43,440 --> 00:13:44,880 EVER CHANGE. 416 00:13:44,880 --> 00:13:46,680 YOU'LL KNOW GOING IN KIND OF 417 00:13:46,680 --> 00:13:48,480 WHAT YOUR RISKS ARE, HOW SAFE IT 418 00:13:48,480 --> 00:13:49,080 MIGHT BE. 419 00:13:49,080 --> 00:13:50,720 AND YOU CAN MAKE THAT DECISION 420 00:13:50,720 --> 00:13:52,880 YOURSELF THAT'S SOMETHING YOU'RE 421 00:13:52,880 --> 00:13:54,960 WILLING TO DO. 422 00:13:54,960 --> 00:13:59,880 SO DO THE BENEFITS OUTWEIGH THE 423 00:13:59,880 --> 00:14:00,560 RISK? 424 00:14:00,560 --> 00:14:01,960 NOW I'M GOING TO WALK THROUGH 425 00:14:01,960 --> 00:14:03,720 WHAT THE RESEARCH PROCESS LOOKS 426 00:14:03,720 --> 00:14:03,920 LIKE. 427 00:14:03,920 --> 00:14:05,000 SOME STUFF WE MIGHT NOT 428 00:14:05,000 --> 00:14:06,240 UNDERSTAND NOW BUT I HAVE SLIDES 429 00:14:06,240 --> 00:14:08,440 TO GO THROUGH AND CLARIFY EACH 430 00:14:08,440 --> 00:14:09,520 OF THESE POINTS. 431 00:14:09,520 --> 00:14:12,480 LET'S SAY YOU HEAR ME TALKING, 432 00:14:12,480 --> 00:14:13,680 OKAY, MAYBE RESEARCH SOUNDS LIKE 433 00:14:13,680 --> 00:14:14,880 SOMETHING I WANT TO DO. 434 00:14:14,880 --> 00:14:17,280 YOU'LL GO OUT AND FIND A 435 00:14:17,280 --> 00:14:18,720 RESEARCH STUDY, YOU OR YOUR 436 00:14:18,720 --> 00:14:20,280 LOVED ONE MIGHT QUALIFY FOR. 437 00:14:20,280 --> 00:14:22,080 WE'LL GO OVER HOW DO THAT IN A 438 00:14:22,080 --> 00:14:22,320 BIT. 439 00:14:22,320 --> 00:14:25,400 YOU CONTACT THE TEAM AND TELL 440 00:14:25,400 --> 00:14:26,240 THEM YOU'RE INTERESTED. 441 00:14:26,240 --> 00:14:27,720 TRADITIONALLY THEY WILL ASK YOU 442 00:14:27,720 --> 00:14:28,880 SOME QUESTIONS, HAVE YOU FILL 443 00:14:28,880 --> 00:14:33,720 OUT A FORM, TO MAKE SURE YOU 444 00:14:33,720 --> 00:14:34,840 MADE MEET INCLUSION OR EXCLUSION 445 00:14:34,840 --> 00:14:36,560 CRITERIA THAT SAYS YOU CAN BE IN 446 00:14:36,560 --> 00:14:39,800 IT, MAKING SURE YOU DON'T MEET 447 00:14:39,800 --> 00:14:41,360 ANYTHING THAT SAYS YOU CAN'T BE 448 00:14:41,360 --> 00:14:42,120 IN IT STUDY. 449 00:14:42,120 --> 00:14:45,200 THEY WILL TELL YOU MORE, WHAT IT 450 00:14:45,200 --> 00:14:47,160 ENTAILS, START GOING OVER RISKS 451 00:14:47,160 --> 00:14:47,760 AND BENEFITS. 452 00:14:47,760 --> 00:14:49,680 IF YOU DECIDE THIS IS SOMETHING 453 00:14:49,680 --> 00:14:51,000 YOU'RE INTERESTED IN, AND 454 00:14:51,000 --> 00:14:58,320 QUALIFY FOR, YOU MOVE FORWARD, A 455 00:14:58,320 --> 00:15:00,520 CONSENT FORM, YOU'LL SIGN AND 456 00:15:00,520 --> 00:15:02,120 ENROLL AT LEAST INITIALLY IN 457 00:15:02,120 --> 00:15:02,360 SCREENING. 458 00:15:02,360 --> 00:15:05,160 AFTER THAT A LOT OF STUDIES HAVE 459 00:15:05,160 --> 00:15:07,480 A PRE-SCREENING ASSESSMENT. 460 00:15:07,480 --> 00:15:08,440 MAYBE DO CONFIRMATORY 461 00:15:08,440 --> 00:15:09,720 ASSESSMENTS WHERE YOU COME IN OR 462 00:15:09,720 --> 00:15:10,840 OTHER THINGS WHERE THEY WILL 463 00:15:10,840 --> 00:15:12,800 COLLECT DATA JUST TO MAKE SURE, 464 00:15:12,800 --> 00:15:16,000 AGAIN, THAT YOU MEET THE 465 00:15:16,000 --> 00:15:17,320 INCLUSION AND EXCLUSION 466 00:15:17,320 --> 00:15:17,640 CRITERIA. 467 00:15:17,640 --> 00:15:20,040 OR SOMETIMES YOU JUST GO IN, 468 00:15:20,040 --> 00:15:21,680 STRAIGHT FOR BASELINE TESTING, 469 00:15:21,680 --> 00:15:22,880 THAT MEANS ORIGINAL TIME, WE'LL 470 00:15:22,880 --> 00:15:25,520 SEE WHERE YOUR HEALTH IS, WHERE 471 00:15:25,520 --> 00:15:27,800 ALL THESE OUTCOMES WE MIGHT BE 472 00:15:27,800 --> 00:15:28,880 INTERESTED IN ARE BEFORE 473 00:15:28,880 --> 00:15:30,760 STARTING ANY KIND OF 474 00:15:30,760 --> 00:15:31,880 INTERVENTION. 475 00:15:31,880 --> 00:15:33,800 AFTER THAT YOU'RE NORMALLY 476 00:15:33,800 --> 00:15:35,040 RANDOMIZED, WHICH WE'LL GO OVER 477 00:15:35,040 --> 00:15:38,760 WHAT THAT IS, TO TWO OR MORE 478 00:15:38,760 --> 00:15:39,080 CONDITIONS. 479 00:15:39,080 --> 00:15:41,640 SO THIS IS A FIGURE DOWN HERE, 480 00:15:41,640 --> 00:15:42,440 YOU HAVE THIS RANDOMIZATION 481 00:15:42,440 --> 00:15:43,840 WHERE YOU'RE PLACED IN A GROUP. 482 00:15:43,840 --> 00:15:45,840 YOU MIGHT BE PLACED TO GET THIS 483 00:15:45,840 --> 00:15:48,600 TREATMENT GROUP, MAYBE TESTING 484 00:15:48,600 --> 00:15:50,360 OUT THE NEW TREATMENT OR NEW 485 00:15:50,360 --> 00:15:51,640 DRUG OR NEW INTERVENTION THAT WE 486 00:15:51,640 --> 00:15:52,640 WANT TO LOOK AT. 487 00:15:52,640 --> 00:15:55,680 AND THEN THE CONTROL GROUP, 488 00:15:55,680 --> 00:15:56,680 WHICH IS TRADITIONALLY THE 489 00:15:56,680 --> 00:16:00,200 STANDARD OF CARE OR COULD BE 490 00:16:00,200 --> 00:16:01,720 LIKE A PLACEBO DRUG. 491 00:16:01,720 --> 00:16:03,680 SO, LET'S GO INTO DETAIL ABOUT 492 00:16:03,680 --> 00:16:04,560 THESE THINGS. 493 00:16:04,560 --> 00:16:05,920 INFORMED CONSENT. 494 00:16:05,920 --> 00:16:07,640 WHAT IS THAT? 495 00:16:07,640 --> 00:16:09,840 INFORMED CONSENT IS THE PROCESS 496 00:16:09,840 --> 00:16:12,000 OF PROVIDING YOU CAN KEY 497 00:16:12,000 --> 00:16:14,360 INFORMATION ABOUT A RESEARCH 498 00:16:14,360 --> 00:16:15,120 STUDY BEFORE YOU DECIDE WHETHER 499 00:16:15,120 --> 00:16:17,520 OR NOT TO TAKE PART IN IT. 500 00:16:17,520 --> 00:16:20,160 THIS IS NORMALLY IN A WRITTEN 501 00:16:20,160 --> 00:16:20,680 DOCUMENT. 502 00:16:20,680 --> 00:16:23,080 IT WILL BE HANDED TO YOU BY THE 503 00:16:23,080 --> 00:16:24,720 STUDY TEAM, OR NOW IN THE 504 00:16:24,720 --> 00:16:26,640 POST-COVID AGE A LOT OF TIMES 505 00:16:26,640 --> 00:16:28,800 THIS MIGHT BE ONLINE, LIKE A 506 00:16:28,800 --> 00:16:31,200 DOCUSIGN WHERE YOU CAN DO IT 507 00:16:31,200 --> 00:16:31,480 REMOTELY. 508 00:16:31,480 --> 00:16:33,600 THE RESEARCH TEAM WILL READ WITH 509 00:16:33,600 --> 00:16:34,680 YOU THE INFORMED CONSENT 510 00:16:34,680 --> 00:16:36,360 DOCUMENT AND GO INTO DETAIL 511 00:16:36,360 --> 00:16:37,560 ABOUT THE PURPOSE OF THE STUDY, 512 00:16:37,560 --> 00:16:42,920 HOW LONG THE STUDY IS EXPECTED 513 00:16:42,920 --> 00:16:45,200 TO LAST, WHAT YOU'RE ASKED TO DO 514 00:16:45,200 --> 00:16:46,760 AND HOW LONG THOSE WILL LAST. 515 00:16:46,760 --> 00:16:49,240 THEY WILL GIVE INFORMATION WHO 516 00:16:49,240 --> 00:16:52,640 YOU CAN CONTACT FOR FURTHER 517 00:16:52,640 --> 00:16:53,280 INFORMATION. 518 00:16:53,280 --> 00:16:54,840 AND THEY WILL GO OVER RISKS AND 519 00:16:54,840 --> 00:16:55,120 BENEFITS. 520 00:16:55,120 --> 00:16:56,200 YOU HAVE THE ABILITY TO DECIDE 521 00:16:56,200 --> 00:16:57,760 WHETHER OR NOT TO SIGN THE 522 00:16:57,760 --> 00:16:59,000 DOCUMENT OR ENROLL IN THE STUDY. 523 00:16:59,000 --> 00:17:02,040 SOMETIMES YOU CAN TAKE A COUPLE 524 00:17:02,040 --> 00:17:03,480 DAYS TO DECIDE, YOU DON'T HAVE 525 00:17:03,480 --> 00:17:05,680 TO ALWAYS DO IT ON THE SPOT. 526 00:17:05,680 --> 00:17:08,080 IF YOU WANT TO THINK ABOUT IT, 527 00:17:08,080 --> 00:17:08,520 THAT'S OKAY. 528 00:17:08,520 --> 00:17:09,960 ONE OF THE MOST IMPORTANT THINGS 529 00:17:09,960 --> 00:17:12,320 TO KNOW IS TAKING PART IN A 530 00:17:12,320 --> 00:17:13,600 CLINICAL TRIAL IS VOLUNTARY. 531 00:17:13,600 --> 00:17:16,120 YOU CAN LEAVE A STUDY AT ANY 532 00:17:16,120 --> 00:17:16,320 TIME. 533 00:17:16,320 --> 00:17:18,320 MAYBE AT FIRST YOU THINK IT 534 00:17:18,320 --> 00:17:20,040 SOUNDS GREAT AND YOU GET INTO IT 535 00:17:20,040 --> 00:17:21,160 AND REALIZE YOU DON'T WANT TO DO 536 00:17:21,160 --> 00:17:21,800 THIS ANYMORE. 537 00:17:21,800 --> 00:17:23,880 IT'S OKAY TO LEAVE. 538 00:17:23,880 --> 00:17:26,800 THERE'S NEVER REPERCUSSIONS FROM 539 00:17:26,800 --> 00:17:28,160 LEAVING A STUDY. 540 00:17:28,160 --> 00:17:29,920 WITH THAT, SOMEONE MIGHT ASK IS 541 00:17:29,920 --> 00:17:32,440 SOMEONE WITH DOWN SYNDROME 542 00:17:32,440 --> 00:17:33,400 ALLOWED TO SIGNED INFORMED 543 00:17:33,400 --> 00:17:35,400 CONSENT AND ENROLL ON THEIR OWN? 544 00:17:35,400 --> 00:17:37,480 THE ANSWER IS IT DEPENDS. 545 00:17:37,480 --> 00:17:40,400 ANYONE UNDER THE AGE OF 18 OR 546 00:17:40,400 --> 00:17:41,920 WHO IS NOT THEIR OWN LEGAL 547 00:17:41,920 --> 00:17:45,240 GUARDIAN MUST HAVE THEIR LEGAL 548 00:17:45,240 --> 00:17:48,160 GUARDIAN OR AUTHORIZED LEGAL 549 00:17:48,160 --> 00:17:49,400 REPRESENTATIVE SIGN THE CONSENT 550 00:17:49,400 --> 00:17:52,480 FORM ON THEIR BEHALF. 551 00:17:52,480 --> 00:17:56,600 THIS INDIVIDUAL CAN SIGN AN 552 00:17:56,600 --> 00:17:58,280 ASSENT FORM, A SMALLER VERSION 553 00:17:58,280 --> 00:17:59,800 THAT THEY WILL SIGN. 554 00:17:59,800 --> 00:18:03,040 YOU HAVE TO HAVE BOTH A CONSENT 555 00:18:03,040 --> 00:18:04,440 AND ASSENT FORM DONE TO ENROLL 556 00:18:04,440 --> 00:18:05,400 IN THE RESEARCH PROJECT. 557 00:18:05,400 --> 00:18:06,920 THIS IS NICE BECAUSE IT PROTECTS 558 00:18:06,920 --> 00:18:08,480 THE PERSON, FOR EXAMPLE, WITH 559 00:18:08,480 --> 00:18:09,680 DOWN SYNDROME FROM BEING FORCED 560 00:18:09,680 --> 00:18:11,320 TO ENROLL IN SOMETHING THEY 561 00:18:11,320 --> 00:18:13,400 DIDN'T WANT TO, OR THAT THEY 562 00:18:13,400 --> 00:18:14,480 DIDN'T UNDERSTAND. 563 00:18:14,480 --> 00:18:15,800 SO YOU CAN'T HAVE, FOR EXAMPLE, 564 00:18:15,800 --> 00:18:17,680 LET'S SAY A PARENT REALLY WANTS 565 00:18:17,680 --> 00:18:19,120 THEIR CHILD TO BE IN THE PROGRAM 566 00:18:19,120 --> 00:18:20,440 OR STUDY BUT THAT PERSON DOESN'T 567 00:18:20,440 --> 00:18:21,720 WANT TO DO IT. 568 00:18:21,720 --> 00:18:24,480 IF THEY DON'T SIGN THE ASSENT 569 00:18:24,480 --> 00:18:27,120 FORM, BUT THE PARENT SIGNS THE 570 00:18:27,120 --> 00:18:28,520 CONSENT FORM, IT WON'T WORK, 571 00:18:28,520 --> 00:18:30,280 THEY STILL CAN'T ENROLL. 572 00:18:30,280 --> 00:18:31,800 OR MAYBE THE PERSON WANTS TO BE 573 00:18:31,800 --> 00:18:33,480 IN, THE PARENT OR LEGAL GUARDIAN 574 00:18:33,480 --> 00:18:35,000 DOESN'T THINK IT'S A GOOD IDEA, 575 00:18:35,000 --> 00:18:36,640 THEY WON'T BE ABLE TO DO IT. 576 00:18:36,640 --> 00:18:37,840 IT TAKES BOTH INDIVIDUALS TO 577 00:18:37,840 --> 00:18:40,760 SIGN THESE FORMS TO AGREE TO BE 578 00:18:40,760 --> 00:18:44,400 IN RESEARCH AND PROVIDES 579 00:18:44,400 --> 00:18:45,720 ADDITIONAL PROTECTIONS. 580 00:18:45,720 --> 00:18:46,880 SO, WE'VE TALKED ABOUT 581 00:18:46,880 --> 00:18:47,480 RANDOMIZATION, THAT'S WHEN 582 00:18:47,480 --> 00:18:48,880 YOU'RE PUT IN ONE OF THESE 583 00:18:48,880 --> 00:18:49,280 GROUPS. 584 00:18:49,280 --> 00:18:50,400 A LOT OF PEOPLE WONDER DO YOU 585 00:18:50,400 --> 00:18:52,840 GET TO PICK YOUR GROUP? 586 00:18:52,840 --> 00:18:55,120 THE ANSWER IS NO. 587 00:18:55,120 --> 00:18:56,120 INDIVIDUALS ARE RANDOMIZED BY 588 00:18:56,120 --> 00:18:57,680 CHANCE AND NOT BY CHOICE. 589 00:18:57,680 --> 00:18:59,360 TYPICALLY A COMPUTER IS THE ONE 590 00:18:59,360 --> 00:19:01,080 ASSIGNING YOU SO YOU CAN'T LIKE 591 00:19:01,080 --> 00:19:02,360 TRY TO CONVINCE SOMEONE TO PUT 592 00:19:02,360 --> 00:19:04,680 YOU IN ONE GROUP OR THE OTHER. 593 00:19:04,680 --> 00:19:07,200 YOUR ODDS OF BEING IN ONE GROUP 594 00:19:07,200 --> 00:19:10,920 VERSUS THE OTHER ARE TYPICALLY 595 00:19:10,920 --> 00:19:12,880 50-50 CHANCE LIKE FLIPPING A 596 00:19:12,880 --> 00:19:13,440 COIN. 597 00:19:13,440 --> 00:19:14,320 SOME ARE DIFFERENT, ENROLLING 598 00:19:14,320 --> 00:19:16,040 MORE IN THE TREATMENT VERSUS 599 00:19:16,040 --> 00:19:16,720 CONTROL ARM. 600 00:19:16,720 --> 00:19:18,680 SOMETIMES YOU HAVE MORE THAN TWO 601 00:19:18,680 --> 00:19:21,560 GROUPS, THAT'S MORE LIKE ROLLING 602 00:19:21,560 --> 00:19:23,080 THE DICE. 603 00:19:23,080 --> 00:19:24,640 DEPENDING ON THE STUDY YOU MIGHT 604 00:19:24,640 --> 00:19:26,280 NOT KNOW WHAT GROUP YOU'RE IN, A 605 00:19:26,280 --> 00:19:32,320 BLINDED TRIAL WHICH WE SEE A LOT 606 00:19:32,320 --> 00:19:33,600 WITH DRUG TRIALS. 607 00:19:33,600 --> 00:19:34,800 DOUBLE BLINDED, THE PEOPLE 608 00:19:34,800 --> 00:19:37,800 CONDUCTING THE STUDY DON'T KNOW 609 00:19:37,800 --> 00:19:39,400 WHAT YOU'RE IN, MORE SEEN IN 610 00:19:39,400 --> 00:19:40,840 DRUG OR SURGICAL TRIALS, IT'S 611 00:19:40,840 --> 00:19:42,400 HARD TO NOT KNOW WHAT GROUP IF 612 00:19:42,400 --> 00:19:51,320 YOU'RE ASKED TO DO SOMETHING. 613 00:19:51,320 --> 00:19:52,560 I TALKED ABOUT PLACEBO OR 614 00:19:52,560 --> 00:19:54,200 CONTROL GROUP. 615 00:19:54,200 --> 00:19:55,280 WHAT IS THAT? 616 00:19:55,280 --> 00:19:56,280 MOST CLINICAL TRIALS WILL 617 00:19:56,280 --> 00:19:57,480 COMPARE A NEW PRODUCT OR THERAPY 618 00:19:57,480 --> 00:19:59,320 WITH ONE THAT ALREADY EXISTS OR 619 00:19:59,320 --> 00:20:03,280 MAYBE ONE THAT DOESN'T EXIST. 620 00:20:03,280 --> 00:20:04,800 SO IN SOME YOU MIGHT BE ASSIGNED 621 00:20:04,800 --> 00:20:06,440 TO CONTROL GROUP THAT MIGHT GET 622 00:20:06,440 --> 00:20:08,200 THE CURRENT TREATMENT OR 623 00:20:08,200 --> 00:20:09,400 WHATEVER WE'RE NORMALLY USING, 624 00:20:09,400 --> 00:20:10,840 STANDARD OF CARE, THE OTHER 625 00:20:10,840 --> 00:20:12,640 GROUP NETS THE NEW TREATMENT. 626 00:20:12,640 --> 00:20:16,080 YOU CAN SEE IS THIS NEW 627 00:20:16,080 --> 00:20:18,280 TREATMENT REALLY BETTER OR EVEN 628 00:20:18,280 --> 00:20:19,880 DEPENDING WHAT THE RESEARCH 629 00:20:19,880 --> 00:20:22,760 QUESTION IS BETTER OR NOT 630 00:20:22,760 --> 00:20:23,720 INFERIOR, GETS SIMILAR RESULTS 631 00:20:23,720 --> 00:20:24,640 AS THE OLD ONCE. 632 00:20:24,640 --> 00:20:26,400 OTHER TIMES YOU MIGHT BE IN THE 633 00:20:26,400 --> 00:20:28,080 DRUG STUDIES WHERE YOU GET A 634 00:20:28,080 --> 00:20:31,320 PLACEBO, AN INACTIVE DRUG. 635 00:20:31,320 --> 00:20:33,080 WE THINK ABOUT LIKE SUGAR PILLS, 636 00:20:33,080 --> 00:20:34,920 IT LOOKS LIKE THE OTHER PILLS, 637 00:20:34,920 --> 00:20:36,720 YOU MAY NOT KNOW ARE YOU GETTING 638 00:20:36,720 --> 00:20:37,680 ONE OR THE OTHER ONE. 639 00:20:37,680 --> 00:20:42,280 IF YOU'RE IN A CONTROL GROUP 640 00:20:42,280 --> 00:20:43,280 SOME MIGHT OFFER YOU THE 641 00:20:43,280 --> 00:20:44,680 TREATMENT GROUP AT THE END BUT 642 00:20:44,680 --> 00:20:46,120 THAT'S NOT ALWAYS THE CASE. 643 00:20:46,120 --> 00:20:47,600 A LOT OF TIMES BEING IN THE 644 00:20:47,600 --> 00:20:51,040 CONTROL GROUP STILL HAS 645 00:20:51,040 --> 00:20:52,040 BENEFITS, IT SHOULDN'T BE 646 00:20:52,040 --> 00:20:53,320 SOMETHING YOU'RE WORRIED OR 647 00:20:53,320 --> 00:20:54,120 SCARED ABOUT. 648 00:20:54,120 --> 00:20:56,280 WILL RESEARCHERS SHARE YOUR DATA 649 00:20:56,280 --> 00:20:57,400 WITH ANYONE? 650 00:20:57,400 --> 00:21:00,000 THE LAW REQUIRES RESEARCHERS 651 00:21:00,000 --> 00:21:01,520 KEEP ALL YOUR IDENTITY AND 652 00:21:01,520 --> 00:21:05,280 ANYTHING THAT COULD IDENTIFY YOU 653 00:21:05,280 --> 00:21:05,840 AS CONFIDENTIAL. 654 00:21:05,840 --> 00:21:07,040 TRADITIONAL AS SOON AS YOU START 655 00:21:07,040 --> 00:21:08,280 A RESEARCH STUDY YOU'LL BE 656 00:21:08,280 --> 00:21:09,720 ASSIGNED A STUDY I.D 657 00:21:09,720 --> 00:21:11,520 ALL THE DATA COLLECTED WILL ONLY 658 00:21:11,520 --> 00:21:13,480 BE ASSOCIATED WITH THAT STUDY 659 00:21:13,480 --> 00:21:13,720 I.D 660 00:21:13,720 --> 00:21:15,920 ONLY A SELECT FEW PEOPLE IN THE 661 00:21:15,920 --> 00:21:17,320 RESEARCH TEAM WILL KNOW WHOSE 662 00:21:17,320 --> 00:21:19,040 NAME IS ASSOCIATED WITH EACH I.D 663 00:21:19,040 --> 00:21:24,760 MAYBE AS SOON AS YOU ENROLL, YOU 664 00:21:24,760 --> 00:21:27,440 STOP BECOMING LAUREN, I START 665 00:21:27,440 --> 00:21:30,560 BECOMING STUDY I.D. 10045, AND 666 00:21:30,560 --> 00:21:32,320 EVERYTHING ABOUT ME IS GOING TO 667 00:21:32,320 --> 00:21:33,040 BE 10045. 668 00:21:33,040 --> 00:21:34,760 YOUR NAME GETS LOST. 669 00:21:34,760 --> 00:21:36,880 NO ONE WILL KNOW YOU'RE IN THE 670 00:21:36,880 --> 00:21:38,520 STUDY OR KNOW PROTECTED 671 00:21:38,520 --> 00:21:40,720 INFORMATION ABOUT YOU. 672 00:21:40,720 --> 00:21:41,320 RESEARCHERS TYPICALLY WILL 673 00:21:41,320 --> 00:21:42,880 PUBLISH THE RESULTS OF THE 674 00:21:42,880 --> 00:21:43,080 STUDY. 675 00:21:43,080 --> 00:21:45,760 HOWEVER A LOT OF TIMES THEY ONLY 676 00:21:45,760 --> 00:21:46,600 DISCUSS GROUP RESULTS, YOUR NAME 677 00:21:46,600 --> 00:21:48,360 WILL NEVER BE USED IN A 678 00:21:48,360 --> 00:21:49,560 PUBLICATION OR PRESENTATION 679 00:21:49,560 --> 00:21:50,640 ABOUT THE CLINICAL TRIAL 680 00:21:50,640 --> 00:21:52,840 UNLESS -- SOME PEOPLE WILL EVERY 681 00:21:52,840 --> 00:21:54,280 NOW AND THEN GIVE ACCESS, IF 682 00:21:54,280 --> 00:21:56,600 IT'S JUST A PICTURE SOMEONE 683 00:21:56,600 --> 00:21:59,320 WANTS TO USE OR VIDEO CLIP BUT 684 00:21:59,320 --> 00:22:00,640 THAT'S A DIFFERENT INFORMATION 685 00:22:00,640 --> 00:22:01,400 THAT'S TAKEN. 686 00:22:01,400 --> 00:22:03,360 TRADITIONALLY NOTHING IS EVER 687 00:22:03,360 --> 00:22:03,560 USED. 688 00:22:03,560 --> 00:22:05,120 SAME THING, THE DATA COLLECTED 689 00:22:05,120 --> 00:22:06,960 MIGHT BE SHARED IN PUBLIC 690 00:22:06,960 --> 00:22:08,160 REPOSITORIES FOR OTHER 691 00:22:08,160 --> 00:22:09,840 RESEARCHERS TO USE FOR RESEARCH, 692 00:22:09,840 --> 00:22:12,240 AGAIN YOUR NAME AND IDENTIFIABLE 693 00:22:12,240 --> 00:22:17,840 INFORMATION WILL NEVER BE 694 00:22:17,840 --> 00:22:18,120 INCLUDED. 695 00:22:18,120 --> 00:22:19,720 WHAT HAPPENS AFTER A CLINICAL 696 00:22:19,720 --> 00:22:20,680 TRIAL IS OVER? 697 00:22:20,680 --> 00:22:22,840 AFTER THE CLINICAL TRIAL IS 698 00:22:22,840 --> 00:22:24,040 COMPLETED, RESEARCHERS WILL LOOK 699 00:22:24,040 --> 00:22:26,000 AT THE INFORMATION COLLECTED AND 700 00:22:26,000 --> 00:22:28,640 MAKE DECISIONS ABOUT THE 701 00:22:28,640 --> 00:22:29,840 MEANINGS OF THE FINDINGS AND 702 00:22:29,840 --> 00:22:31,640 NEXT STEPS OF FUTURE TESTING. 703 00:22:31,640 --> 00:22:35,320 THE RESULTS ARE OFTEN PUBLISHED 704 00:22:35,320 --> 00:22:36,280 IN PEER-REVIEWED JOURNALS, AND A 705 00:22:36,280 --> 00:22:39,160 LOT OF TIMES RESULTS WILL BE 706 00:22:39,160 --> 00:22:40,680 PUBLISHED ON SOMETHING CALLED 707 00:22:40,680 --> 00:22:41,120 clinicaltrials.gov. 708 00:22:41,120 --> 00:22:43,000 ON clinicaltrials.gov, IT'S A 709 00:22:43,000 --> 00:22:44,720 REPOSITORY WHERE ANYTIME BEFORE 710 00:22:44,720 --> 00:22:46,080 YOU START AN INTERVENTION YOU 711 00:22:46,080 --> 00:22:47,400 HAVE TO ENROLL YOUR STUDY AND 712 00:22:47,400 --> 00:22:49,760 PUT IN ALL THE DETAILS ABOUT IT. 713 00:22:49,760 --> 00:22:52,720 THIS WILL BE GOOD FOR HELPING TO 714 00:22:52,720 --> 00:22:53,600 LOOK FOR RESEARCH STUDIES 715 00:22:53,600 --> 00:22:55,240 BECAUSE YOU CAN SEE ANYTHING 716 00:22:55,240 --> 00:22:56,800 CURRENTLY RECRUITING OR IS ABOUT 717 00:22:56,800 --> 00:22:58,840 TO RECRUIT, WHAT CONDITIONS THEY 718 00:22:58,840 --> 00:23:01,360 WORK WITH, WHAT THE INTERVENTION 719 00:23:01,360 --> 00:23:01,520 IS. 720 00:23:01,520 --> 00:23:03,880 AFTER THE TRIAL IS DONE AND 721 00:23:03,880 --> 00:23:05,400 RESEARCHERS ARE REQUIRED TO PUT 722 00:23:05,400 --> 00:23:06,760 RESULTS UP, THIS IS A SCREEN 723 00:23:06,760 --> 00:23:11,560 SHOT OF MIGHT HAVE OWN STUDIES. 724 00:23:11,560 --> 00:23:12,760 YOU CAN SEE ANYONE WHO WANTED TO 725 00:23:12,760 --> 00:23:14,960 BE IN THE STUDY OR IS CURIOUS 726 00:23:14,960 --> 00:23:17,280 ABOUT THE DATA AND DIDN'T WANT 727 00:23:17,280 --> 00:23:19,120 TO LOOK FOR THE PAPER CAN HIT 728 00:23:19,120 --> 00:23:20,640 THE RESULTS TAB AND IT WILL PULL 729 00:23:20,640 --> 00:23:23,720 UP THE RESULTS OF THE STUDY. 730 00:23:23,720 --> 00:23:25,360 IF SOMEONE IS IN THE TRIAL, YOU 731 00:23:25,360 --> 00:23:27,960 MAY OR MAY NOT FIND OUT WHAT 732 00:23:27,960 --> 00:23:29,960 GROUP YOU'RE IN OR WHAT YOUR 733 00:23:29,960 --> 00:23:31,400 INDIVIDUAL RESULTS ARE. 734 00:23:31,400 --> 00:23:32,440 THIS IS DEPENDENT ON THE TRIAL 735 00:23:32,440 --> 00:23:35,560 THAT YOU'RE ENROLLED IN AND WHAT 736 00:23:35,560 --> 00:23:36,760 THEIR RULES ARE. 737 00:23:36,760 --> 00:23:39,040 IF THERE'S EVER ANY REASON IT'S 738 00:23:39,040 --> 00:23:39,840 LIKE CRITICALLY MEDICALLY 739 00:23:39,840 --> 00:23:42,120 NECESSARY TO KNOW WHAT GROUP YOU 740 00:23:42,120 --> 00:23:46,000 WERE IN, THE RESEARCHERS WILL 741 00:23:46,000 --> 00:23:47,280 TYPICALLY RELEASE THAT 742 00:23:47,280 --> 00:23:47,600 INFORMATION. 743 00:23:47,600 --> 00:23:49,120 YOU MIGHT ASK, OKAY, WHAT SHOULD 744 00:23:49,120 --> 00:23:50,920 I BE CONSIDERING BEFORE JOINING 745 00:23:50,920 --> 00:23:51,880 A CLINICAL TRIAL? 746 00:23:51,880 --> 00:23:54,920 THERE'S A BUNCH OF THINGS TO 747 00:23:54,920 --> 00:23:56,480 THINK ABOUT. 748 00:23:56,480 --> 00:23:58,200 WHAT ARE THE RISKS AND WHAT ARE 749 00:23:58,200 --> 00:23:58,960 THE BENEFITS? 750 00:23:58,960 --> 00:24:00,760 HOW CAN IT HELP YOU AND OTHERS? 751 00:24:00,760 --> 00:24:02,880 IS THAT BETTER THAN ANY OF THE 752 00:24:02,880 --> 00:24:05,240 RISKS THE STUDY MIGHT HAVE? 753 00:24:05,240 --> 00:24:06,880 YOU HAVE TO BE OKAY WITH BEING 754 00:24:06,880 --> 00:24:09,000 IN EITHER OF THE STUDY GROUPS. 755 00:24:09,000 --> 00:24:10,240 IF THERE'S ONE YOU'RE WORRIED 756 00:24:10,240 --> 00:24:13,560 ABOUT BEING IN OR DON'T THINK IT 757 00:24:13,560 --> 00:24:18,280 WOULD WORK, IT'S PROBABLY NOT A 758 00:24:18,280 --> 00:24:19,160 STUDY FOR YOU. 759 00:24:19,160 --> 00:24:21,000 YOU HAVE TO LOOK AT TIME 760 00:24:21,000 --> 00:24:21,880 COMMITMENT, IT'S IMPORTANT TO 761 00:24:21,880 --> 00:24:23,320 COLLECT CERTAIN DATA AT CERTAIN 762 00:24:23,320 --> 00:24:24,920 TIMES, IF THEY KNOW YOU'LL HAVE 763 00:24:24,920 --> 00:24:27,400 TO COME IN EVERY SIX MONTHS AND 764 00:24:27,400 --> 00:24:28,720 THESE ARE TIMES, IT WILL TAKE 765 00:24:28,720 --> 00:24:30,640 TWO HOURS, YOU HAVE TO BE 766 00:24:30,640 --> 00:24:31,600 WILLING TO MAKE THAT HAPPEN. 767 00:24:31,600 --> 00:24:33,600 OR IF THEY ASK YOU TO CHANGE OR 768 00:24:33,600 --> 00:24:35,560 DO SOMETHING, YOU HAVE TO AGAIN 769 00:24:35,560 --> 00:24:38,000 LOOK AT YOUR LIFE AND CALENDAR, 770 00:24:38,000 --> 00:24:42,040 IS I FIT THAT IN? 771 00:24:42,040 --> 00:24:43,360 DRIVING TO A HOSPITAL OR 772 00:24:43,360 --> 00:24:45,320 ACADEMIC MEDICAL CENTER EVERY 773 00:24:45,320 --> 00:24:46,520 MONTH, THAT'S REQUIRED, OR EVEN 774 00:24:46,520 --> 00:24:48,000 CHANGING PART OF YOUR LIFESTYLE, 775 00:24:48,000 --> 00:24:49,920 BEING WILLING TO TAKE A NEW 776 00:24:49,920 --> 00:24:55,080 DRUG, THERE'S A LOT OF 777 00:24:55,080 --> 00:24:58,080 CONSIDERATIONS BEFORE JOINING A 778 00:24:58,080 --> 00:24:58,280 TRIAL. 779 00:24:58,280 --> 00:24:59,400 ONE OF THE OTHER CONSIDERATIONS 780 00:24:59,400 --> 00:25:01,600 IS THE ROLE OF THE PARENT OR 781 00:25:01,600 --> 00:25:03,200 CAREGIVER, ESPECIALLY IN DOWN 782 00:25:03,200 --> 00:25:03,960 SYNDROME RESEARCH. 783 00:25:03,960 --> 00:25:08,920 CAREGIVERS ARE OFTEN NEEDED TO 784 00:25:08,920 --> 00:25:12,840 ASSIST WITH TRANSPORTATION 785 00:25:12,840 --> 00:25:13,280 NEEDS, APPOINTMENTS, 786 00:25:13,280 --> 00:25:14,400 INTERVENTION COMPLIANCE, A LOT 787 00:25:14,400 --> 00:25:17,720 OF TIMES COMPLETING 788 00:25:17,720 --> 00:25:19,240 QUESTIONNAIRES OR SURVEYS, OR 789 00:25:19,240 --> 00:25:20,840 TESTING DONE ON THEMSELVES. 790 00:25:20,840 --> 00:25:22,480 OFTENTIMES THE PARENT OR 791 00:25:22,480 --> 00:25:24,120 CAREGIVER IS JUST AS IMPORTANT 792 00:25:24,120 --> 00:25:26,400 TO THE RESEARCH PROCESS AS THE 793 00:25:26,400 --> 00:25:27,840 PARTICIPANT THEMSELVES. 794 00:25:27,840 --> 00:25:29,480 PARENTS AND CAREGIVERS NEED TO 795 00:25:29,480 --> 00:25:31,720 LOOK AT THAT LIST OF WHAT TO 796 00:25:31,720 --> 00:25:34,000 INCLUDE AND DECIDE NOT ONLY DOES 797 00:25:34,000 --> 00:25:35,400 MY LOVED ONE WITH DOWN SYNDROME 798 00:25:35,400 --> 00:25:36,760 HAVE THE ABILITY TO COMMIT TO 799 00:25:36,760 --> 00:25:41,760 THIS BUT ALSO DO I. 800 00:25:41,760 --> 00:25:43,360 SO, WHAT'S BEING DONE TO 801 00:25:43,360 --> 00:25:44,720 INCREASE RESEARCH IN DOWN 802 00:25:44,720 --> 00:25:45,000 SYNDROME? 803 00:25:45,000 --> 00:25:47,800 YOU MAYBE HEARD ME SAY EARLIER 804 00:25:47,800 --> 00:25:49,280 THERE'S NOT A LOT BEING DONE, 805 00:25:49,280 --> 00:25:51,840 NOT A LOT OF RESEARCH INCLUDED 806 00:25:51,840 --> 00:25:54,200 INDIVIDUALS WITH DOWN SYNDROME. 807 00:25:54,200 --> 00:25:55,040 BUT THE NATIONAL INSTITUTES OF 808 00:25:55,040 --> 00:25:57,280 HEALTH HAS A NEW PROJECT CALLED 809 00:25:57,280 --> 00:25:58,880 THE INCLUDE PROJECT, 810 00:25:58,880 --> 00:25:59,880 INVESTIGATION OF CO-OCCURRING 811 00:25:59,880 --> 00:26:01,240 CONDITIONS ACROSS THE LIFESPAN 812 00:26:01,240 --> 00:26:03,160 TO UNDERSTAND DOWN SYNDROME. 813 00:26:03,160 --> 00:26:05,440 THAT WAS MADE TO DEVOTE A LOT OF 814 00:26:05,440 --> 00:26:07,520 TIME AND EFFORT TO FUNDING 815 00:26:07,520 --> 00:26:09,720 CRITICAL RESEARCH IN THE DOWN 816 00:26:09,720 --> 00:26:10,520 SYNDROME POPULATION. 817 00:26:10,520 --> 00:26:12,160 SOME GOALS OF THE INCLUDE 818 00:26:12,160 --> 00:26:13,200 PROJECT ARE CONDUCT CLINICAL 819 00:26:13,200 --> 00:26:14,520 TRIALS THAT INCLUDE INDIVIDUALS 820 00:26:14,520 --> 00:26:17,600 WITH DOWN SYNDROME, AND THEY ARE 821 00:26:17,600 --> 00:26:20,000 DOING TRIALS SPECIFIC TO DOWN 822 00:26:20,000 --> 00:26:21,760 SYNDROME-RELATED RISK SUCH AS 823 00:26:21,760 --> 00:26:23,720 REGRESSION, AND SLEEP APNEA, BUT 824 00:26:23,720 --> 00:26:24,800 ALSO MAKING SURE THAT 825 00:26:24,800 --> 00:26:25,840 INDIVIDUALS WITH DOWN SYNDROME 826 00:26:25,840 --> 00:26:29,000 ARE JUST INCLUDED IN THE GENERAL 827 00:26:29,000 --> 00:26:29,720 RESEARCH STUDY. 828 00:26:29,720 --> 00:26:31,680 THEY ARE WORKING TO BRING NEW 829 00:26:31,680 --> 00:26:32,880 RESEARCHERS INTO THE DOWN 830 00:26:32,880 --> 00:26:36,400 SYNDROME FIELD TO CREATE MORE 831 00:26:36,400 --> 00:26:37,920 STATE-OF-THE-ART MODERN RESEARCH 832 00:26:37,920 --> 00:26:42,000 AND KEEP ALL THE RESEARCH, LIKE 833 00:26:42,000 --> 00:26:43,800 THE CUTTING EDGE, MAKE SURE IT'S 834 00:26:43,800 --> 00:26:45,160 INCLUDING INDIVIDUALS WITH DOWN 835 00:26:45,160 --> 00:26:46,240 SYNDROME. 836 00:26:46,240 --> 00:26:48,440 IN THIS SOUNDS APPEALING, HOW DO 837 00:26:48,440 --> 00:26:51,360 I FIND IF THERE'S RESEARCH 838 00:26:51,360 --> 00:26:53,560 STUDIES THAT MYSELF OR MY LOVED 839 00:26:53,560 --> 00:26:54,840 ONE CAN ENROLL IN, ONE OF THE 840 00:26:54,840 --> 00:27:01,120 BEST PLACES TO GO IS A WEBSITE, 841 00:27:01,120 --> 00:27:03,320 DS-CONNECT, RIGHT HERE, AND IT'S 842 00:27:03,320 --> 00:27:04,520 A DOWN SYNDROME REGISTRY. 843 00:27:04,520 --> 00:27:07,280 FIRST YOU CAN ENROLL AND PROVIDE 844 00:27:07,280 --> 00:27:08,280 BASIC INFORMATION ABOUT THE 845 00:27:08,280 --> 00:27:10,320 PERSON WITH DOWN SYNDROME IN IT. 846 00:27:10,320 --> 00:27:11,400 THAT ACTUALLY IS A RESEARCH 847 00:27:11,400 --> 00:27:13,480 STUDY OF ITS OWN. 848 00:27:13,480 --> 00:27:15,040 IT'S A HEALTH SURVEY, MORE ON 849 00:27:15,040 --> 00:27:17,440 THE OBSERVATIONAL THAT WE TALKED 850 00:27:17,440 --> 00:27:18,560 ABOUT EARLIER BUT ALLOWING 851 00:27:18,560 --> 00:27:21,360 PEOPLE TO COLLECT DATA ABOUT 852 00:27:21,360 --> 00:27:22,240 HEALTH RISKS, DIFFERENT THINGS, 853 00:27:22,240 --> 00:27:24,880 TO HELP EXPAND THE RESEARCH 854 00:27:24,880 --> 00:27:25,120 FIELD. 855 00:27:25,120 --> 00:27:26,000 PARTICIPANTS CAN LEARN ABOUT 856 00:27:26,000 --> 00:27:28,480 CLINICAL TRIALS THROUGH THIS 857 00:27:28,480 --> 00:27:29,120 SITE. 858 00:27:29,120 --> 00:27:34,200 ALMOST ANY OF THESE STUDIES 859 00:27:34,200 --> 00:27:35,480 FUNDED BY THE INCLUDE PROJECT 860 00:27:35,480 --> 00:27:36,680 WILL BE LISTED. 861 00:27:36,680 --> 00:27:37,800 YOU CAN GO TO THIS 862 00:27:37,800 --> 00:27:39,320 clinicaltrials.gov THAT I 863 00:27:39,320 --> 00:27:40,440 TALKED ABOUT EARLIER WITH ANY 864 00:27:40,440 --> 00:27:41,840 CLINICAL TRIAL GOING ON HAS TO 865 00:27:41,840 --> 00:27:42,480 BE REGISTERED THERE. 866 00:27:42,480 --> 00:27:44,280 THERE WILL BE A SEARCH BOX THAT 867 00:27:44,280 --> 00:27:46,560 WILL SAY TYPE IN A MEDICAL 868 00:27:46,560 --> 00:27:48,200 CONDITION YOU'RE INTERESTED IN. 869 00:27:48,200 --> 00:27:50,560 YOU CAN TYPE IN DOWN SYNDROME 870 00:27:50,560 --> 00:27:52,800 OTHER INTELLECTUAL DISABILITY OR 871 00:27:52,800 --> 00:27:53,880 SLEEP APNEA, WHATEVER YOU'RE 872 00:27:53,880 --> 00:27:55,960 MOST PASSIONATE ABOUT. 873 00:27:55,960 --> 00:27:57,280 EVERY STUDY RECRUITING, MAYBE 874 00:27:57,280 --> 00:27:58,200 GETTING READY TO RECRUIT ABOUT 875 00:27:58,200 --> 00:27:59,160 COME UP. 876 00:27:59,160 --> 00:28:03,280 YOU CAN GO THROUGH AND CLICK AND 877 00:28:03,280 --> 00:28:13,560 SEE IF YOU MEET 878 00:28:13,960 --> 00:28:14,800 INCLUSION-EXCLUSION CRITERIA. 879 00:28:14,800 --> 00:28:17,200 IT MAY NOT JUST BE DOWN 880 00:28:17,200 --> 00:28:20,280 SYNDROME-SPECIFIC BUT STILL MAY 881 00:28:20,280 --> 00:28:20,520 QUALIFY. 882 00:28:20,520 --> 00:28:22,320 THE LAST THING, WE WANTED TO 883 00:28:22,320 --> 00:28:23,960 TALK ABOUT SOMEONE INVOLVED IN 884 00:28:23,960 --> 00:28:25,720 CLINICAL RESEARCH AND THEIR 885 00:28:25,720 --> 00:28:26,080 EXPERIENCES. 886 00:28:26,080 --> 00:28:28,680 I WANT TO GO OVER THE STUDY THEY 887 00:28:28,680 --> 00:28:29,840 ARE IN, A LITTLE OVERVIEW. 888 00:28:29,840 --> 00:28:32,280 THIS IS ONE OF MY ONGOING 889 00:28:32,280 --> 00:28:33,400 STUDIES, THE PROMOTION OF 890 00:28:33,400 --> 00:28:35,000 PHYSICAL ACTIVITY FOR PREVENTION 891 00:28:35,000 --> 00:28:37,440 OF ALZHEIMER'S DISEASE IN ADULTS 892 00:28:37,440 --> 00:28:38,520 WITH DOWN SYNDROME. 893 00:28:38,520 --> 00:28:41,160 WE'RE LOOKING TO SEE IF GROUP 894 00:28:41,160 --> 00:28:42,040 REMOTE PHYSICAL ACTIVITY 895 00:28:42,040 --> 00:28:44,080 SESSIONS CAN IMPROVE PHYSICAL 896 00:28:44,080 --> 00:28:44,480 ACTIVITY. 897 00:28:44,480 --> 00:28:47,400 AND LOOKING TO SEE IF PHYSICAL 898 00:28:47,400 --> 00:28:50,480 ACTIVITY HAS ANY EFFECT ON 899 00:28:50,480 --> 00:28:52,000 COGNITION, IMAGING, ANYTHING 900 00:28:52,000 --> 00:28:53,200 RELATED TO ALZHEIMER'S DISEASE. 901 00:28:53,200 --> 00:28:55,720 WHEN SOMEONE IS INTERESTED IN A 902 00:28:55,720 --> 00:28:57,320 STUDY THEY ARE RANDOMIZED, PUT 903 00:28:57,320 --> 00:29:00,520 INTO 1 OF 3 GROUPS, REMOTE HIGH, 904 00:29:00,520 --> 00:29:03,800 THREE GROUP EXERCISES A WEEK. 905 00:29:03,800 --> 00:29:06,440 REMOTE LOW ONE GROUP EXERCISE 906 00:29:06,440 --> 00:29:08,280 SESSION A WEEK, OR ENHANCED 907 00:29:08,280 --> 00:29:10,600 USUAL CONTROL, WHERE THEY DON'T 908 00:29:10,600 --> 00:29:12,360 GET LIVE EXERCISE SESSIONS BUT 909 00:29:12,360 --> 00:29:14,000 MEET WITH A HEALTH COACH TWICE A 910 00:29:14,000 --> 00:29:16,720 MONTH AND THEY GET A FITBIT AND 911 00:29:16,720 --> 00:29:20,280 THEY ARE TOLD TO GET PHYSICAL 912 00:29:20,280 --> 00:29:21,080 ACTIVITY AT HOME. 913 00:29:21,080 --> 00:29:24,080 I'M GOING TO TURN IT BACK OVER 914 00:29:24,080 --> 00:29:24,320 TO ERIKA. 915 00:29:24,320 --> 00:29:26,800 >>THANK YOU SO MUCH, DR. 916 00:29:26,800 --> 00:29:27,880 PTOMEY. 917 00:29:27,880 --> 00:29:29,720 THAT WAS A WONDERFUL 918 00:29:29,720 --> 00:29:30,760 PRESENTATION OVERVIEW. 919 00:29:30,760 --> 00:29:32,400 AGAIN, IF THERE'S QUESTIONS THAT 920 00:29:32,400 --> 00:29:33,280 PARTICIPANTS MAY HAVE, PLEASE 921 00:29:33,280 --> 00:29:36,680 FEEL FREE TO SUBMIT THEM IN THE 922 00:29:36,680 --> 00:29:39,520 CHAT IN Q&A. 923 00:29:39,520 --> 00:29:40,800 WE'LL OPEN UP FOR GENERAL 924 00:29:40,800 --> 00:29:42,200 DISCUSSION. 925 00:29:42,200 --> 00:29:44,240 I'M HAPPY AND PLEASED TO 926 00:29:44,240 --> 00:29:45,640 INTRODUCE OUR STUDY PARTICIPANTS 927 00:29:45,640 --> 00:29:48,920 THAT DR. PTOMEY MENTIONED. 928 00:29:48,920 --> 00:29:51,760 FIRST WE HAVE SEAN ROBERT 929 00:29:51,760 --> 00:29:53,760 KORTAN, 22 YEARS OLD, A YOUNG 930 00:29:53,760 --> 00:29:55,200 ADULT WITH DOWN SYNDROME. 931 00:29:55,200 --> 00:29:57,280 HE PARTICIPATES IN DR. PTOMEY'S 932 00:29:57,280 --> 00:29:57,560 STUDY. 933 00:29:57,560 --> 00:30:02,080 HE IS THE MIDDLE OF THREE SONS, 934 00:30:02,080 --> 00:30:03,080 VERY ACTIVE. 935 00:30:03,080 --> 00:30:04,560 HE'S PLAYED CHALLENGER BASEBALL, 936 00:30:04,560 --> 00:30:07,200 SOCCER, SWAM FOR SPECIAL 937 00:30:07,200 --> 00:30:08,840 OLYMPICS, RAN TRACK, 938 00:30:08,840 --> 00:30:10,600 PARTICIPATED IN WEIGHT LIFTING, 939 00:30:10,600 --> 00:30:11,600 PARTICIPATED IN UNIFIED BOWLING 940 00:30:11,600 --> 00:30:13,600 AND LEARNED TO RIDE A BICYCLE. 941 00:30:13,600 --> 00:30:17,320 WHEN WE SAY SEAN IS VERY ACTIVE, 942 00:30:17,320 --> 00:30:19,400 SEAN IS VERY ACTIVE. 943 00:30:19,400 --> 00:30:20,880 AFTER GRADUATING FROM THE 944 00:30:20,880 --> 00:30:24,680 ELKHORN YOUNG PROGRAM IN MAY OF 945 00:30:24,680 --> 00:30:29,160 2022 SEAN LANDED A JOB AT COFFEE 946 00:30:29,160 --> 00:30:29,720 SHOP ATTENDANT, INCLUDING 947 00:30:29,720 --> 00:30:31,240 STOCKING THE SHOP AS WELL AS 948 00:30:31,240 --> 00:30:33,200 CLEANING THE SHOP AND 949 00:30:33,200 --> 00:30:34,000 SURROUNDING AREAS. 950 00:30:34,000 --> 00:30:35,520 HE TAKES GREAT PRIDE IN HIS 951 00:30:35,520 --> 00:30:37,800 WORK, STRIVES TO PLEASE HIS 952 00:30:37,800 --> 00:30:39,240 MANAGER, HIS JOB FULFILLS SEAN'S 953 00:30:39,240 --> 00:30:43,160 DESIRE TO BE AROUND AND BUILD 954 00:30:43,160 --> 00:30:44,040 RELATIONSHIPS WITH OTHERS. 955 00:30:44,040 --> 00:30:46,680 OUTSIDE OF WORKS HE LOVES TO 956 00:30:46,680 --> 00:30:48,000 SING, DANCE, PLAY DRUMS, SWIM, 957 00:30:48,000 --> 00:30:50,480 AND HANG OUT WITH HIS FAMILY. 958 00:30:50,480 --> 00:30:52,560 WE'RE ALSO PLEASED TO HAVE WITH 959 00:30:52,560 --> 00:30:55,080 SEAN HIS MOTHER, LISA KORTAN. 960 00:30:55,080 --> 00:30:57,400 LISA GREW UP IN A SMALL TOWN IN 961 00:30:57,400 --> 00:31:00,000 SOUTH DAKOTA, THE OLDEST OF FOUR 962 00:31:00,000 --> 00:31:00,320 CHILDREN. 963 00:31:00,320 --> 00:31:05,120 AFTER HIGH SCHOOL SHE ATTENDED 964 00:31:05,120 --> 00:31:07,240 COLLEGE IN YANKTON, SOUTH 965 00:31:07,240 --> 00:31:09,200 DAKOTA, A DEGREE IN SECONDARY 966 00:31:09,200 --> 00:31:09,560 EDUCATION. 967 00:31:09,560 --> 00:31:13,680 WHEN THE FIRST CHILD WAS BORN 968 00:31:13,680 --> 00:31:16,640 LISA WOULD STAY HOME AND BE A 969 00:31:16,640 --> 00:31:18,600 FULL-TIME MOM. 970 00:31:18,600 --> 00:31:21,040 SEAN WAS BORN TWO YEARS LATER, 971 00:31:21,040 --> 00:31:24,320 CARSON WAS BORN SEVEN YEARS 972 00:31:24,320 --> 00:31:25,080 AFTER THAT. 973 00:31:25,080 --> 00:31:29,240 LISA IS SEAN FRONT'S LINE 974 00:31:29,240 --> 00:31:30,680 CAREGIVER, ADVOCATE, TEACHER, 975 00:31:30,680 --> 00:31:33,880 COACH, FRIEND AND HER MOST LOVED 976 00:31:33,880 --> 00:31:35,160 ROLE IS HIS MOTHER. 977 00:31:35,160 --> 00:31:37,560 WE'LL START OFF BY ASKING A FEW 978 00:31:37,560 --> 00:31:38,880 QUESTIONS OF LISA AND SEAN. 979 00:31:38,880 --> 00:31:40,720 FIRST WE WANT TO SAY WELCOME AND 980 00:31:40,720 --> 00:31:46,120 THANK YOU AGAIN FOR BEING HERE. 981 00:31:46,120 --> 00:31:48,600 SO, LISA, COULD YOU TELL US HOW 982 00:31:48,600 --> 00:31:50,120 YOU LEARNED ABOUT DR. PTOMEY'S 983 00:31:50,120 --> 00:31:52,600 STUDY AND WHY YOU DECIDED TO 984 00:31:52,600 --> 00:31:54,000 PARTICIPATE IN THE STUDY? 985 00:31:54,000 --> 00:31:55,880 >>SURE. 986 00:31:55,880 --> 00:31:57,160 HI, EVERYBODY. 987 00:31:57,160 --> 00:31:59,120 WELL, WE WERE DRIVING HOME FROM 988 00:31:59,120 --> 00:32:00,760 KANSAS CITY. 989 00:32:00,760 --> 00:32:01,760 WE LIVE IN OMAHA. 990 00:32:01,760 --> 00:32:05,160 I WAS COLLECTING MY E-MAILS. 991 00:32:05,160 --> 00:32:07,680 I RECEIVED AN E-MAIL FROM A 992 00:32:07,680 --> 00:32:09,960 FRIEND HERE IN OMAHA, WHO I 993 00:32:09,960 --> 00:32:12,160 BELIEVE HER SON ACTUALLY WAS IN 994 00:32:12,160 --> 00:32:15,120 THE STUDY THE YEAR BEFORE SEAN. 995 00:32:15,120 --> 00:32:20,480 AND SO I READ ABOUT THE STUDY, 996 00:32:20,480 --> 00:32:23,440 AND THEY NEEDED I THINK MAYBE 997 00:32:23,440 --> 00:32:25,080 SIX MORE PEOPLE TO JOIN THE 998 00:32:25,080 --> 00:32:28,800 STUDY. 999 00:32:28,800 --> 00:32:31,240 IT WAS A LAST-MINUTE PLEA FOR 1000 00:32:31,240 --> 00:32:32,640 CAN ANYBODY ELSE JOIN, WE'RE 1001 00:32:32,640 --> 00:32:35,640 TRYING TO GET THIS DONE, SO I 1002 00:32:35,640 --> 00:32:37,480 READ ABOUT IT. 1003 00:32:37,480 --> 00:32:40,120 AND JUST SEEMED LIKE A WIN-WIN 1004 00:32:40,120 --> 00:32:40,400 SITUATION. 1005 00:32:40,400 --> 00:32:43,200 YOU KNOW, IT WAS GOING TO BE 1006 00:32:43,200 --> 00:32:44,640 RESEARCH THAT COULD BENEFIT SEAN 1007 00:32:44,640 --> 00:32:47,600 POSSIBLY LATER IN HIS LIFE, AND 1008 00:32:47,600 --> 00:32:49,960 HE WAS GOING TO GET HEALTHIER 1009 00:32:49,960 --> 00:32:50,960 THROUGHOUT THE PROCESS. 1010 00:32:50,960 --> 00:32:52,960 SO I THOUGHT WHY NOT? 1011 00:32:52,960 --> 00:32:55,560 SO WE TOOK A CHANCE AND SIGNED 1012 00:32:55,560 --> 00:32:56,680 UP. 1013 00:32:56,680 --> 00:32:59,200 AND HERE WE ARE. 1014 00:32:59,200 --> 00:32:59,800 >>AWESOME. 1015 00:32:59,800 --> 00:33:02,120 WELL, AS WE LEARNED FROM DR. 1016 00:33:02,120 --> 00:33:03,000 PTOMEY'S PRESENTATION, ASSENT IS 1017 00:33:03,000 --> 00:33:05,120 PART OF IT. 1018 00:33:05,120 --> 00:33:06,840 SO, SEAN, YOU CLEARLY ASSENTED 1019 00:33:06,840 --> 00:33:07,960 TO PARTICIPATE IN THE STUDY. 1020 00:33:07,960 --> 00:33:11,120 CAN YOU TELL US WHAT IS IT THAT 1021 00:33:11,120 --> 00:33:13,760 YOU LIKE ABOUT PARTICIPATING IN 1022 00:33:13,760 --> 00:33:15,160 THE STUDY SO FAR? 1023 00:33:15,160 --> 00:33:19,320 >>I AM VERY STRONGER, AND 1024 00:33:19,320 --> 00:33:24,040 HAPPY, MORE ABS. 1025 00:33:24,040 --> 00:33:27,760 I WANT TO PLAY WITH MY BROTHERS 1026 00:33:27,760 --> 00:33:30,280 AND MOTHER AND FATHERS, UNCLES, 1027 00:33:30,280 --> 00:33:30,520 COUSINS. 1028 00:33:30,520 --> 00:33:32,040 >> I KNOW YOU WERE READING WHAT 1029 00:33:32,040 --> 00:33:34,000 YOU WROTE DOWN BUT SHE'S ASKING 1030 00:33:34,000 --> 00:33:37,520 WHAT DO YOU LIKE ABOUT BEING 1031 00:33:37,520 --> 00:33:40,240 IN -- DOING THE EXERCISE STUDY 1032 00:33:40,240 --> 00:33:44,400 WITH TRAINER JESSI, WHAT DO YOU 1033 00:33:44,400 --> 00:33:45,280 LIKE ABOUT IT? 1034 00:33:45,280 --> 00:33:48,000 WHAT DOES IT DO FOR YOU? 1035 00:33:48,000 --> 00:33:49,440 >>I'M VERY, VERY SMART. 1036 00:33:49,440 --> 00:33:53,600 >>IT MAKES YOU SMART. 1037 00:33:53,600 --> 00:33:53,800 AND? 1038 00:33:53,800 --> 00:33:54,200 >>AND STRONGER. 1039 00:33:54,200 --> 00:33:58,960 >>IT MAKES YOU STRONGER, YES. 1040 00:33:58,960 --> 00:34:01,480 >>THAT'S AWESOME. 1041 00:34:01,480 --> 00:34:03,760 YOU MENTIONED FAMILIES MEMBERS 1042 00:34:03,760 --> 00:34:04,560 YOU'RE PARTICIPATING WITH. 1043 00:34:04,560 --> 00:34:06,840 DO YOU HAVE A HEALTHY 1044 00:34:06,840 --> 00:34:08,040 COMPETITION WITH YOUR SIBLINGS, 1045 00:34:08,040 --> 00:34:09,680 WITH YOUR BROTHERS, WHO CAN DO 1046 00:34:09,680 --> 00:34:13,640 MORE PUSH-UPS? 1047 00:34:13,640 --> 00:34:14,040 I'M JUST CURIOUS. 1048 00:34:14,040 --> 00:34:19,320 >>DO DO YOU ANY EXERCISES WITH 1049 00:34:19,320 --> 00:34:19,760 YOUR BROTHERS? 1050 00:34:19,760 --> 00:34:26,560 >>I PLAY -- ARM WRESTLING WITH 1051 00:34:26,560 --> 00:34:26,760 THEM. 1052 00:34:26,760 --> 00:34:28,000 >>ARM WRESTLING WITH THEM. 1053 00:34:28,000 --> 00:34:30,080 IS THERE ANYTHING YOU DO IN THE 1054 00:34:30,080 --> 00:34:34,400 BASEMENT WITH YOUR BROTHERS FOR 1055 00:34:34,400 --> 00:34:34,680 EXERCISE? 1056 00:34:34,680 --> 00:34:37,160 >>THEY ARE ALSO PLAY DRUMS 1057 00:34:37,160 --> 00:34:37,600 WITH PLEA. 1058 00:34:37,600 --> 00:34:39,120 >>DRUMS. 1059 00:34:39,120 --> 00:34:40,480 AND ALSO -- 1060 00:34:40,480 --> 00:34:41,400 >> ALSO DANCE TOO. 1061 00:34:41,400 --> 00:34:44,760 >>THEY DO A LOT OF DANCING 1062 00:34:44,760 --> 00:34:45,560 WITH THE NINTENDO SWITCH. 1063 00:34:45,560 --> 00:34:47,440 >>IT'S A GREAT FORM OF 1064 00:34:47,440 --> 00:34:49,320 EXERCISE, ONE I THINK THAT'S 1065 00:34:49,320 --> 00:34:51,200 UNDERAPPRECIATED. 1066 00:34:51,200 --> 00:34:54,240 A QUESTION FOR YOU, LISA, AS THE 1067 00:34:54,240 --> 00:34:55,480 STUDY IS ONGOING, HAVE THERE 1068 00:34:55,480 --> 00:34:57,320 WILL BE BENEFITS YOU'VE NOTICED 1069 00:34:57,320 --> 00:34:59,160 ABOUT PARTICIPATING IN THE 1070 00:34:59,160 --> 00:34:59,520 STUDY? 1071 00:34:59,520 --> 00:35:02,520 FOR SEAN AND FOR YOU AS WELL. 1072 00:35:02,520 --> 00:35:04,120 >>SURE. 1073 00:35:04,120 --> 00:35:06,400 I THINK -- WELL, WEARING THE 1074 00:35:06,400 --> 00:35:08,160 FITBIT, YOU KNOW, THE STEPS SHOW 1075 00:35:08,160 --> 00:35:09,560 UP RIGHT AWAY. 1076 00:35:09,560 --> 00:35:11,800 AND YOU GUYS JUST TALKING WITH 1077 00:35:11,800 --> 00:35:13,960 US, YOU HEARD ABOUT SEAN'S CRAZY 1078 00:35:13,960 --> 00:35:16,320 STEP NUMBERS THAT HE'S GETTING. 1079 00:35:16,320 --> 00:35:19,680 I THINK ONE OF THE BENEFITS IS 1080 00:35:19,680 --> 00:35:21,640 JUST THE AWARENESS OF THE 1081 00:35:21,640 --> 00:35:23,960 EXERCISE OR AMOUNT OF EXERCISE 1082 00:35:23,960 --> 00:35:25,480 HE'S GETTING. 1083 00:35:25,480 --> 00:35:27,680 IT'S A CONSTANT HIM TELLING US 1084 00:35:27,680 --> 00:35:30,560 AND LETTING US KNOW THE EXERCISE 1085 00:35:30,560 --> 00:35:31,240 THAT HE'S GETTING. 1086 00:35:31,240 --> 00:35:34,720 I THINK, YOU KNOW, THERE'S 1087 00:35:34,720 --> 00:35:36,560 BEEN -- I MEAN THERE'S A LOT OF 1088 00:35:36,560 --> 00:35:37,000 THINGS. 1089 00:35:37,000 --> 00:35:42,120 YOU KNOW, WE CALL HIM TRAINER, 1090 00:35:42,120 --> 00:35:44,000 OR BOY JESSI, BECAUSE WE HAVE 1091 00:35:44,000 --> 00:35:46,960 OTHER JESSIES IN THE REALM OF 1092 00:35:46,960 --> 00:35:48,160 THE STUDY. 1093 00:35:48,160 --> 00:35:51,000 JUST TALKING WITH JESSI, WE'VE 1094 00:35:51,000 --> 00:35:52,240 GOTTEN SOME PROTEIN POWDER, YOU 1095 00:35:52,240 --> 00:35:53,840 KNOW, THAT SEAN IS DOING EACH 1096 00:35:53,840 --> 00:35:55,480 DAY, WHICH HAS LED TO OUR ADULT 1097 00:35:55,480 --> 00:35:57,040 SON THAT DOESN'T LIVE WITH US 1098 00:35:57,040 --> 00:35:58,920 DOING THE SAME PROTEIN POWDER. 1099 00:35:58,920 --> 00:36:02,520 MY HUSBAND DOING THE PROTEIN 1100 00:36:02,520 --> 00:36:02,760 POWDER. 1101 00:36:02,760 --> 00:36:04,080 THAT'S SOMETHING ADDED TO OUR 1102 00:36:04,080 --> 00:36:06,920 LIFE, WHICH IS A BENEFIT. 1103 00:36:06,920 --> 00:36:09,880 AND, YOU KNOW, DOING -- WE'RE 1104 00:36:09,880 --> 00:36:10,760 CONSTANTLY TALKING ABOUT 1105 00:36:10,760 --> 00:36:12,840 EXERCISE BECAUSE OF THE STEPS 1106 00:36:12,840 --> 00:36:15,040 SEAN IS DOING. 1107 00:36:15,040 --> 00:36:16,480 THAT'S BENEFICIAL. 1108 00:36:16,480 --> 00:36:18,000 SO JUST SIMPLE EVERYDAY THINGS 1109 00:36:18,000 --> 00:36:21,600 THAT ARE MAKING US HEALTHIER 1110 00:36:21,600 --> 00:36:23,600 AND, YOU KNOW, BETTER 1111 00:36:23,600 --> 00:36:24,440 FUNCTIONING PEOPLE. 1112 00:36:24,440 --> 00:36:28,080 SO I THINK THOSE ARE POSITIVE 1113 00:36:28,080 --> 00:36:28,320 THINGS. 1114 00:36:28,320 --> 00:36:28,680 >>ABSOLUTELY. 1115 00:36:28,680 --> 00:36:30,880 AND IF YOU DON'T MIND, I'D LOVE 1116 00:36:30,880 --> 00:36:36,440 TO SHARE WITH THE GROUP HOW MANY 1117 00:36:36,440 --> 00:36:39,720 STEPS SEAN HAS GOTTEN OVER THE 1118 00:36:39,720 --> 00:36:40,040 PAST WEEKEND. 1119 00:36:40,040 --> 00:36:47,280 >>YEAH. 1120 00:36:47,280 --> 00:36:51,600 HOW MANY STEPS YESTERDAY? 1121 00:36:51,600 --> 00:36:52,000 >>TWENTY-FOUR. 1122 00:36:52,000 --> 00:36:58,000 >>A CRAZY WEEKEND. 1123 00:36:58,000 --> 00:36:59,600 THE NIGHT BEFORE 21,000. 1124 00:36:59,600 --> 00:37:01,680 >>23,000. 1125 00:37:01,680 --> 00:37:02,640 >>THERE YOU GO. 1126 00:37:02,640 --> 00:37:05,600 IT'S IMPORTANT TO GET IT 1127 00:37:05,600 --> 00:37:05,840 CORRECT. 1128 00:37:05,840 --> 00:37:07,240 THAT IS AMAZING TO HAVE THAT 1129 00:37:07,240 --> 00:37:07,800 MANY STEPS. 1130 00:37:07,800 --> 00:37:10,640 IT'S GREAT TO SEE THE STUDY 1131 00:37:10,640 --> 00:37:12,600 HELPS TO ENCOURAGE THAT AS WELL. 1132 00:37:12,600 --> 00:37:15,120 WE'RE TALKING A LOT ABOUT THE 1133 00:37:15,120 --> 00:37:18,520 POSITIVE AND IT'S GOOD TO SEE A 1134 00:37:18,520 --> 00:37:19,520 BALANCED VIEW. 1135 00:37:19,520 --> 00:37:20,960 SO, HAVE THERE BEEN CHALLENGES, 1136 00:37:20,960 --> 00:37:24,320 LISA AND SEAN, THAT YOU SEE WITH 1137 00:37:24,320 --> 00:37:25,560 PARTICIPATING IN THE STUDY? 1138 00:37:25,560 --> 00:37:27,800 >>WE'LL GET SEAN GO FIRST. 1139 00:37:27,800 --> 00:37:30,120 IS THERE ANYTHING YOU DON'T LIKE 1140 00:37:30,120 --> 00:37:32,000 ABOUT DOING THE EXERCISE STUDY? 1141 00:37:32,000 --> 00:37:37,320 ANYTHING THAT'S HARD OR THAT YOU 1142 00:37:37,320 --> 00:37:37,680 DON'T LIKE? 1143 00:37:37,680 --> 00:37:41,920 >>THE SQUATS HURT MY LEGS AND 1144 00:37:41,920 --> 00:37:42,120 KNEES. 1145 00:37:42,120 --> 00:37:46,400 >>OH, THE SQUATS ARE HARD 1146 00:37:46,400 --> 00:37:46,720 SOMETIMES. 1147 00:37:46,720 --> 00:37:47,840 THERE'S THAT. 1148 00:37:47,840 --> 00:37:54,080 I WOULD SAY FOR ME, REALLY IT 1149 00:37:54,080 --> 00:37:55,840 HASN'T BEEN CHALLENGING. 1150 00:37:55,840 --> 00:37:58,120 I WOULD SAY IN THE BEGINNING, I 1151 00:37:58,120 --> 00:37:59,440 MEAN, AS YOU GUYS KNOW NOW THAT 1152 00:37:59,440 --> 00:38:02,520 YOU MET ME I'M NOT VERY 1153 00:38:02,520 --> 00:38:02,800 TECHNICAL. 1154 00:38:02,800 --> 00:38:04,920 SO THE WHOLE WEBINAR HAS BEEN 1155 00:38:04,920 --> 00:38:06,560 THE BIGGEST CHALLENGE. 1156 00:38:06,560 --> 00:38:08,200 IN THE BEGINNING WITH THE FITBIT 1157 00:38:08,200 --> 00:38:11,560 IT WAS GETTING IT CONNECTED, IT 1158 00:38:11,560 --> 00:38:12,040 WASN'T SYNCING RIGHT. 1159 00:38:12,040 --> 00:38:15,080 SO IT WAS OH MY GOSH, LIKE CAN 1160 00:38:15,080 --> 00:38:18,160 WE DO THIS? 1161 00:38:18,160 --> 00:38:18,920 COMPLICATED FOR ME. 1162 00:38:18,920 --> 00:38:21,320 AND SO I'LL HAVE TO SAY ANYTIME 1163 00:38:21,320 --> 00:38:23,320 WE'VE HAD DIFFICULTIES, I CAN 1164 00:38:23,320 --> 00:38:25,080 CALL SOMEBODY, E-MAIL SOMEBODY, 1165 00:38:25,080 --> 00:38:27,160 TEXT SOMEBODY, AND EVERYBODY HAS 1166 00:38:27,160 --> 00:38:32,440 BEEN VERY HELPFUL. 1167 00:38:32,440 --> 00:38:33,200 EVEN THOUGH CHALLENGING, THERE 1168 00:38:33,200 --> 00:38:34,280 WAS SUPPORT. 1169 00:38:34,280 --> 00:38:35,160 I'M A STRAIGHT SHOOTER. 1170 00:38:35,160 --> 00:38:36,480 IF I SAY I'M GOING TO DO 1171 00:38:36,480 --> 00:38:38,560 SOMETHING, I'LL DO IT. 1172 00:38:38,560 --> 00:38:40,240 WITH SOMEBODY SAYING, YEAH, 1173 00:38:40,240 --> 00:38:41,240 WE'LL HELP YOU, OBVIOUSLY THEY 1174 00:38:41,240 --> 00:38:44,720 HELPED ME AND THAT WAS A SIMPLE 1175 00:38:44,720 --> 00:38:45,160 THING. 1176 00:38:45,160 --> 00:38:46,600 I APPRECIATED THAT. 1177 00:38:46,600 --> 00:38:50,240 SO THE OTHER PART, WE ARE -- WE 1178 00:38:50,240 --> 00:38:51,520 ALREADY HAVE MENTIONED BOY 1179 00:38:51,520 --> 00:38:52,640 JESSI, OUR TRAINER. 1180 00:38:52,640 --> 00:38:54,920 WE HAVE HIM EVERY OTHER WEEK. 1181 00:38:54,920 --> 00:38:58,560 WE MEET WITH HIM THROUGH ZOOM. 1182 00:38:58,560 --> 00:39:02,720 SO WHICH OBVIOUSLY WE'RE CAPABLE 1183 00:39:02,720 --> 00:39:03,360 OF DOING. 1184 00:39:03,360 --> 00:39:06,080 SO THAT MAYBE WOULD HAVE BEEN 1185 00:39:06,080 --> 00:39:09,800 CHALLENGING FOR SOME PEOPLE. 1186 00:39:09,800 --> 00:39:11,520 DOING THE REMOTE, YOU KNOW, THAT 1187 00:39:11,520 --> 00:39:13,280 WE'RE IN OMAHA, THEY ARE IN 1188 00:39:13,280 --> 00:39:13,840 KANSAS CITY. 1189 00:39:13,840 --> 00:39:15,600 BUT THAT KIND OF WORKED OUT AS A 1190 00:39:15,600 --> 00:39:19,000 BENEFIT FOR US, NOT A CHALLENGE, 1191 00:39:19,000 --> 00:39:21,080 BECAUSE I MEAN EVERYBODY IS 1192 00:39:21,080 --> 00:39:21,280 BUSY. 1193 00:39:21,280 --> 00:39:24,760 FOR US, THAT FIT IN OUR SCHEDULE 1194 00:39:24,760 --> 00:39:25,240 BETTER. 1195 00:39:25,240 --> 00:39:26,640 MORE RURAL FOLLOWERS. 1196 00:39:26,640 --> 00:39:29,720 SO SEAN WOULD GET -- GO THROUGH 1197 00:39:29,720 --> 00:39:31,320 THE EXERCISING WITH JESSI AND 1198 00:39:31,320 --> 00:39:33,200 COULD SHOW HIM IF THERE WAS 1199 00:39:33,200 --> 00:39:34,520 SOMETHING NEW HE DIDN'T KNOW HOW 1200 00:39:34,520 --> 00:39:37,360 TO DO, WE WOULD WRITE DOWN YOUR 1201 00:39:37,360 --> 00:39:39,560 GOAL FOR THIS WEEK IS 12,000 1202 00:39:39,560 --> 00:39:41,960 STEPS OR 13,000 STEPS, WHATEVER 1203 00:39:41,960 --> 00:39:42,520 IT WAS. 1204 00:39:42,520 --> 00:39:45,560 AND THEN LET'S DO PUSH-UPS OR 1205 00:39:45,560 --> 00:39:47,280 SQUATS THIS WEEK OR WHATEVER IT 1206 00:39:47,280 --> 00:39:49,040 WOULD BE, WE WOULD WRITE IT 1207 00:39:49,040 --> 00:39:49,400 DOWN. 1208 00:39:49,400 --> 00:39:52,360 I'M LUCKY THAT SEAN IS CAPABLE 1209 00:39:52,360 --> 00:39:53,760 AND SEAN WOULD STICK TO THE 1210 00:39:53,760 --> 00:39:56,400 ROUTINE AND HE WOULD ADD THOSE 1211 00:39:56,400 --> 00:39:56,680 IN. 1212 00:39:56,680 --> 00:39:58,920 SO, I GUESS THAT'S NOT REALLY A 1213 00:39:58,920 --> 00:40:00,040 CHALLENGE BUT IT COULD HAVE 1214 00:40:00,040 --> 00:40:01,040 BEEN. 1215 00:40:01,040 --> 00:40:05,960 BUT IT HASN'T BEEN. 1216 00:40:05,960 --> 00:40:07,920 I FEEL LIKE I'VE BEEN VERY 1217 00:40:07,920 --> 00:40:08,160 SUPPORTED. 1218 00:40:08,160 --> 00:40:10,280 >>THAT'S IMPORTANT. 1219 00:40:10,280 --> 00:40:11,080 THERE'S NO CHALLENGES, YOU KNOW, 1220 00:40:11,080 --> 00:40:13,040 THAT'S A GREAT THING. 1221 00:40:13,040 --> 00:40:14,880 IT'S GREAT THAT THE RESEARCH 1222 00:40:14,880 --> 00:40:15,800 PROGRAM LAST THE INFRASTRUCTURE 1223 00:40:15,800 --> 00:40:19,640 IN PLACE TO BE ABLE TO REACH 1224 00:40:19,640 --> 00:40:20,920 POPULATIONS THAT ARE OUTSIDE OF 1225 00:40:20,920 --> 00:40:25,000 THE CATCHMENT AREA AND IN MORE 1226 00:40:25,000 --> 00:40:25,960 GEOGRAPHICALLY RURAL 1227 00:40:25,960 --> 00:40:26,280 POPULATIONS. 1228 00:40:26,280 --> 00:40:28,280 SO, ONE LAST QUESTION FOR THE 1229 00:40:28,280 --> 00:40:29,480 TWO OF YOU. 1230 00:40:29,480 --> 00:40:31,920 IS THERE ANYTHING THAT YOU WOULD 1231 00:40:31,920 --> 00:40:33,520 LIKE THE RESEARCHERS TO KNOW OR 1232 00:40:33,520 --> 00:40:35,800 CONSIDER WHEN THEY ARE PLANNING 1233 00:40:35,800 --> 00:40:39,160 ANY FUTURE STUDIES OR CLINICAL 1234 00:40:39,160 --> 00:40:41,200 TRIALS? 1235 00:40:41,200 --> 00:40:42,120 OKAY.. 1236 00:40:42,120 --> 00:40:43,720 >>LIKE WHEN THIS IS DONE IF WE 1237 00:40:43,720 --> 00:40:46,280 WERE GOING TO DO ANOTHER STUDY, 1238 00:40:46,280 --> 00:40:47,720 IF WE WERE DOING TO DO THIS 1239 00:40:47,720 --> 00:40:49,120 AGAIN, WHAT WOULD YOU WANT TO 1240 00:40:49,120 --> 00:40:49,880 TELL THEM? 1241 00:40:49,880 --> 00:40:52,080 WHAT WOULD YOU LIKE ABOUT IT OR 1242 00:40:52,080 --> 00:40:53,880 WANT IT TO BE? 1243 00:40:53,880 --> 00:41:00,400 >>I WANT IT TO BE FUN AND BE 1244 00:41:00,400 --> 00:41:00,880 MORE HEALTHY. 1245 00:41:00,880 --> 00:41:02,680 >>BE MORE HEALTHY AGAIN AND 1246 00:41:02,680 --> 00:41:02,840 FUN. 1247 00:41:02,840 --> 00:41:03,560 >>YEAH. 1248 00:41:03,560 --> 00:41:04,000 AND GET STRONG. 1249 00:41:04,000 --> 00:41:09,600 >>SOMETHING TO MAKE YOU 1250 00:41:09,600 --> 00:41:09,840 STRONG. 1251 00:41:09,840 --> 00:41:10,480 >>UH-HUH. 1252 00:41:10,480 --> 00:41:12,360 AND THEN TO DO IT WITH FAMILY 1253 00:41:12,360 --> 00:41:12,720 AND FRIENDS. 1254 00:41:12,720 --> 00:41:13,640 >>THAT'S GOOD. 1255 00:41:13,640 --> 00:41:21,320 YEP, I AGREE WITH THAT. 1256 00:41:21,320 --> 00:41:23,520 I THINK -- WELL, I THINK DR. 1257 00:41:23,520 --> 00:41:24,480 LAUREN HIT ON IT. 1258 00:41:24,480 --> 00:41:25,840 I DIDN'T KNOW WHAT THE SLIDES 1259 00:41:25,840 --> 00:41:27,240 WERE GOING TO BE. 1260 00:41:27,240 --> 00:41:28,760 I WOULD HAVE PROBABLY BROUGHT 1261 00:41:28,760 --> 00:41:30,600 UP, YOU KNOW, IT'S NOT JUST 1262 00:41:30,600 --> 00:41:32,960 ABOUT SEAN BEING IN THE STUDY. 1263 00:41:32,960 --> 00:41:39,520 OBVIOUSLY, YOU CAN SEE HOW WE 1264 00:41:39,520 --> 00:41:39,840 COMMUNICATE. 1265 00:41:39,840 --> 00:41:44,480 THAT'S HOW JESSI DEALS WITH US. 1266 00:41:44,480 --> 00:41:45,000 SOMETIMES SEAN DOESN'T 1267 00:41:45,000 --> 00:41:45,920 UNDERSTAND THE QUESTION, I BREAK 1268 00:41:45,920 --> 00:41:46,440 IT DOWN. 1269 00:41:46,440 --> 00:41:48,520 WE'RE A TEAM. 1270 00:41:48,520 --> 00:41:51,040 THAT'S HOW SEAN, YOU KNOW, GETS 1271 00:41:51,040 --> 00:41:54,400 THROUGH LIFE IS ME. 1272 00:41:54,400 --> 00:41:56,400 SO, WE -- THE STUDY HAS TO WORK 1273 00:41:56,400 --> 00:42:00,680 FOR BOTH OF US. 1274 00:42:00,680 --> 00:42:03,280 AND I THINK ONE SLIDE SAID THAT. 1275 00:42:03,280 --> 00:42:04,880 IT'S NOT JUST HIM COMMITTING TO 1276 00:42:04,880 --> 00:42:05,520 THE STUDY. 1277 00:42:05,520 --> 00:42:08,160 IT'S BOTH OF US. 1278 00:42:08,160 --> 00:42:13,640 I THINK AS LONG AS THE STUDY IS, 1279 00:42:13,640 --> 00:42:14,720 YOU KNOW, POSITIVE, AND, YOU 1280 00:42:14,720 --> 00:42:17,120 KNOW, JUST LIKE THIS ONE, WHEN I 1281 00:42:17,120 --> 00:42:20,640 READ IT, IT MADE SENSE TO ME. 1282 00:42:20,640 --> 00:42:22,800 YOU KNOW, SO I GUESS I'M 1283 00:42:22,800 --> 00:42:24,640 ASSUMING MOST CLINICAL TRIALS IN 1284 00:42:24,640 --> 00:42:27,080 RESEARCH ARE SUPPOSED TO WORK 1285 00:42:27,080 --> 00:42:27,520 OUT THAT WAY. 1286 00:42:27,520 --> 00:42:30,360 SO I THINK I TOLD YOU GUYS 1287 00:42:30,360 --> 00:42:33,560 BEFORE, I FEEL GUILTY THAT MAYBE 1288 00:42:33,560 --> 00:42:34,960 I HAVEN'T BEEN IN ONE BEFORE. 1289 00:42:34,960 --> 00:42:38,080 WE HAVEN'T BEEN IN ONE BEFORE. 1290 00:42:38,080 --> 00:42:40,240 BUT WE'RE JUST AT A TIME IN OUR 1291 00:42:40,240 --> 00:42:42,200 LIFE THAT THIS IS WORKING FOR 1292 00:42:42,200 --> 00:42:42,480 US. 1293 00:42:42,480 --> 00:42:44,920 SEAN IS OUT OF SCHOOL, HAS HIS 1294 00:42:44,920 --> 00:42:47,360 FIRST JOB, WE'RE MORE OPEN TO 1295 00:42:47,360 --> 00:42:49,440 BEING ABLE TO PARTICIPATE MORE. 1296 00:42:49,440 --> 00:42:52,280 SO, I FEEL LIKE AS LONG AS 1297 00:42:52,280 --> 00:42:54,120 STUDIES ARE, YOU KNOW, THE 1298 00:42:54,120 --> 00:42:56,440 COMMITMENT IS THERE TO WORK WITH 1299 00:42:56,440 --> 00:42:58,400 US, WHICH OBVIOUSLY LIKE I SAID 1300 00:42:58,400 --> 00:43:00,520 WE FEEL SUPPORTED IN THIS STUDY, 1301 00:43:00,520 --> 00:43:03,000 SO WE'RE HAVING A GOOD 1302 00:43:03,000 --> 00:43:04,440 EXPERIENCE, I FEEL LIKE AS LONG 1303 00:43:04,440 --> 00:43:07,280 AS PEOPLE GET THAT, AND HAVE 1304 00:43:07,280 --> 00:43:09,040 THAT FEELING, YOU'RE GOING TO BE 1305 00:43:09,040 --> 00:43:11,120 ABLE TO FIND PEOPLE TO BE IN 1306 00:43:11,120 --> 00:43:13,960 TRIALS AND RESEARCH AND STUDIES. 1307 00:43:13,960 --> 00:43:16,800 SO, AGAIN, THAT WIN-WIN 1308 00:43:16,800 --> 00:43:17,080 COMBINATION. 1309 00:43:17,080 --> 00:43:17,480 >>ABSOLUTELY. 1310 00:43:17,480 --> 00:43:20,120 I THINK THAT RAISES A GREAT 1311 00:43:20,120 --> 00:43:20,520 POINT. 1312 00:43:20,520 --> 00:43:21,840 I'LL ACTUALLY OPEN AND WELCOME 1313 00:43:21,840 --> 00:43:24,240 DR. PTOMEY AS WELL TO THE 1314 00:43:24,240 --> 00:43:26,560 DISCUSSION BECAUSE I THINK THIS 1315 00:43:26,560 --> 00:43:27,400 TOUCHES ON SOMETHING THAT 1316 00:43:27,400 --> 00:43:29,600 PERTAINS TO BOTH OF YOU. 1317 00:43:29,600 --> 00:43:31,600 LOOKING -- THE POINT YOU RAISED 1318 00:43:31,600 --> 00:43:33,400 ABOUT PARTICIPATING IN CLINICAL 1319 00:43:33,400 --> 00:43:34,680 TRIALS AND CLINICAL STUDIES NOW 1320 00:43:34,680 --> 00:43:36,480 BECAUSE SEAN IS AT A POINT WHERE 1321 00:43:36,480 --> 00:43:39,560 HE'S OUT OF SCHOOL AND HAS A 1322 00:43:39,560 --> 00:43:43,040 LITTLE BIT MORE FREEDOM, DO YOU 1323 00:43:43,040 --> 00:43:47,520 FEEL THAT THE COMMITMENT FOR 1324 00:43:47,520 --> 00:43:49,080 TIME PARTICIPATE IN STUDIES, AIR 1325 00:43:49,080 --> 00:43:51,080 QUOTES HERE, MAY HAVE BEEN A 1326 00:43:51,080 --> 00:43:53,720 DETERRENT OR REASON AS TO WHY 1327 00:43:53,720 --> 00:44:00,720 YOU MAY NOT HAVE PARTICIPATED 1328 00:44:00,720 --> 00:44:00,960 EARLIER? 1329 00:44:00,960 --> 00:44:02,560 >>OH MY GOSH. 1330 00:44:02,560 --> 00:44:05,600 >>I'M SORRY IF I OPENED A CAN 1331 00:44:05,600 --> 00:44:06,440 OF WORMS. 1332 00:44:06,440 --> 00:44:09,920 >>I KNOW, THAT'S A LOT! 1333 00:44:09,920 --> 00:44:12,720 I DON'T KNOW IF THERE REALLY WAS 1334 00:44:12,720 --> 00:44:16,560 A TRIAL THAT WAS PRESENTED TO ME 1335 00:44:16,560 --> 00:44:19,080 BEFORE, AND MAYBE THAT'S BECAUSE 1336 00:44:19,080 --> 00:44:23,360 OF HIM HAVING DOWN SYNDROME. 1337 00:44:23,360 --> 00:44:26,600 WERE THEY OUT THERE? 1338 00:44:26,600 --> 00:44:28,400 >>THERE'S BEEN A LOT MORE 1339 00:44:28,400 --> 00:44:31,400 TRIALS COMING OUT RECENTLY, 1340 00:44:31,400 --> 00:44:32,760 ESPECIALLY WITH THE NATIONAL 1341 00:44:32,760 --> 00:44:35,080 INSTITUTES OF HEALTH INCLUDE 1342 00:44:35,080 --> 00:44:35,720 INITIATIVE. 1343 00:44:35,720 --> 00:44:38,040 I THINK YOU GUYS ARE ALSO IN A 1344 00:44:38,040 --> 00:44:39,240 UNIQUE POSITION THAT, YOU KNOW, 1345 00:44:39,240 --> 00:44:43,520 YOU LIVE IN AN AREA WITHOUT HUGE 1346 00:44:43,520 --> 00:44:46,040 ACADEMIC MEDICAL CENTER 1347 00:44:46,040 --> 00:44:47,240 CONDUCTING THESE TRIALS. 1348 00:44:47,240 --> 00:44:49,120 FOR THIS ONE SINCE WE DECIDED IT 1349 00:44:49,120 --> 00:44:50,520 WAS REMOTE AND WE COULD REACH 1350 00:44:50,520 --> 00:44:51,720 OUT TO SURROUNDING AREAS WE WERE 1351 00:44:51,720 --> 00:44:53,280 ABLE TO ENROLL AND FIND OUT MORE 1352 00:44:53,280 --> 00:44:55,280 ABOUT THAT BUT I'M HOPING, YOU 1353 00:44:55,280 --> 00:44:57,240 KNOW, IN THE FUTURE YOU'LL HAVE 1354 00:44:57,240 --> 00:44:58,760 MORE ACCESS TO THESE TRIALS, OR 1355 00:44:58,760 --> 00:44:59,520 KNOW ABOUT THEM. 1356 00:44:59,520 --> 00:45:04,000 I THINK THAT'S ONE NICE THING 1357 00:45:04,000 --> 00:45:14,120 THAT THE D S CONNECT SITE, 1358 00:45:14,120 --> 00:45:15,400 THERE'S SOME OUT THERE, 1359 00:45:15,400 --> 00:45:21,680 REMOTELY, YOU CAN JOIN THE 1360 00:45:21,680 --> 00:45:22,560 REGISTRY, BUT RESEARCHERS CAN 1361 00:45:22,560 --> 00:45:25,960 USE IT TO ANSWER REALLY BIG 1362 00:45:25,960 --> 00:45:27,480 QUESTIONS. 1363 00:45:27,480 --> 00:45:28,480 SO, YEAH, THERE PROBABLY WEREN'T 1364 00:45:28,480 --> 00:45:30,320 A TON OF STUDIES OUT THERE 1365 00:45:30,320 --> 00:45:31,760 ESPECIALLY WHERE YOU ALL LIVE 1366 00:45:31,760 --> 00:45:34,520 BUT HOPEFULLY THAT'S CHANGING 1367 00:45:34,520 --> 00:45:34,680 NOW. 1368 00:45:34,680 --> 00:45:35,720 AND YOU'LL STILL, LIKE I SAID, 1369 00:45:35,720 --> 00:45:38,000 WE'RE GOING TO KEEP BUGGING YOU 1370 00:45:38,000 --> 00:45:38,160 NOW. 1371 00:45:38,160 --> 00:45:39,440 >>RIGHT, YES, I REMEMBER THAT. 1372 00:45:39,440 --> 00:45:42,160 I THINK JUST LIKE THE OTHER DAY 1373 00:45:42,160 --> 00:45:45,120 WHEN WE WERE TALKING ABOUT HOW 1374 00:45:45,120 --> 00:45:46,800 MY FRIEND -- WE LIVED HERE 20 1375 00:45:46,800 --> 00:45:49,280 YEARS, I HAVE A BEST FRIEND FROM 1376 00:45:49,280 --> 00:45:51,920 ALL 20 YEARS, HER SON ALSO HAS 1377 00:45:51,920 --> 00:45:54,240 DOWN SYNDROME, SAME AGE AS SEAN. 1378 00:45:54,240 --> 00:45:56,520 WHEN WE MOVED HERE IT WAS KIND 1379 00:45:56,520 --> 00:45:58,680 OF LIKE EVERYBODY HAD THE SAME 1380 00:45:58,680 --> 00:46:02,280 PEDIATRICIAN, THE SAME EYE 1381 00:46:02,280 --> 00:46:03,280 DOCTORS. 1382 00:46:03,280 --> 00:46:05,280 AND NOW THAT OUR SON AND OUR 1383 00:46:05,280 --> 00:46:07,120 FRIEND GROUPS THAT GROWN UP AND 1384 00:46:07,120 --> 00:46:09,520 CHILDREN ARE OLDER WE BRANCHED 1385 00:46:09,520 --> 00:46:10,960 OUT BECAUSE EVERYBODY CAN TAKE 1386 00:46:10,960 --> 00:46:13,600 THEIR SON OR DAUGHTER AND JUST 1387 00:46:13,600 --> 00:46:16,120 GO TO THEIR SAME GENERAL DOCTOR. 1388 00:46:16,120 --> 00:46:18,520 YOU KNOW, HE CAN COME TO MY SAME 1389 00:46:18,520 --> 00:46:19,280 DOCTOR. 1390 00:46:19,280 --> 00:46:22,800 WE DON'T HAVE A SPECIALIZED 1391 00:46:22,800 --> 00:46:24,120 PEDIATRICIAN OR SPECIALIZED EYE 1392 00:46:24,120 --> 00:46:25,840 DOCTOR ANYMORE THAT WE ALL SEEM 1393 00:46:25,840 --> 00:46:28,400 TO GO TO WHEN OUR CHILDREN WERE 1394 00:46:28,400 --> 00:46:28,640 LITTLE. 1395 00:46:28,640 --> 00:46:32,480 I FEEL LIKE A LITTLE BIT MORE 1396 00:46:32,480 --> 00:46:34,200 BRANCHED OUT AND MAYBE -- YOU 1397 00:46:34,200 --> 00:46:38,360 KNOW, MAYBE WE'RE JUST A LITTLE 1398 00:46:38,360 --> 00:46:39,360 MORE DISPERSED, OUR INFORMATION, 1399 00:46:39,360 --> 00:46:41,320 I DON'T KNOW, I THINK THAT'S 1400 00:46:41,320 --> 00:46:42,400 WHAT I WAS TRYING TO GET ACROSS 1401 00:46:42,400 --> 00:46:43,320 THE OTHER DAY. 1402 00:46:43,320 --> 00:46:44,560 I FEEL LIKE WE'RE A LITTLE BIT 1403 00:46:44,560 --> 00:46:46,240 MORE SPREAD OUT WHICH SEEMS 1404 00:46:46,240 --> 00:46:48,920 CONFUSING BECAUSE NOW WITH ALL 1405 00:46:48,920 --> 00:46:51,520 THE SOCIAL MEDIA WE SHOULD BE 1406 00:46:51,520 --> 00:46:52,480 MORE CONNECTED. 1407 00:46:52,480 --> 00:46:54,680 BUT SEEMS LIKE WE'RE NOT, FOR 1408 00:46:54,680 --> 00:46:55,000 SOME REASON. 1409 00:46:55,000 --> 00:46:57,760 SO I DON'T KNOW WHAT THAT IS. 1410 00:46:57,760 --> 00:47:01,640 BUT I GUESS WITH THIS RESEARCH 1411 00:47:01,640 --> 00:47:03,880 AND -- I DON'T KNOW. 1412 00:47:03,880 --> 00:47:04,720 MAYBE. 1413 00:47:04,720 --> 00:47:07,480 MAYBE WE CAN GET SOMETHING GOING 1414 00:47:07,480 --> 00:47:10,320 AND MAYBE NOW THAT LIKE I'M NEW 1415 00:47:10,320 --> 00:47:11,640 TO THE TRANSITION, MAYBE THERE'S 1416 00:47:11,640 --> 00:47:13,280 SOMETHING OUT HERE I DON'T KNOW 1417 00:47:13,280 --> 00:47:15,480 ABOUT YET AND JUST LIKE THIS, I 1418 00:47:15,480 --> 00:47:20,360 DIDN'T KNOW ABOUT CLINICAL 1419 00:47:20,360 --> 00:47:21,960 TRIALS AND NOW I'M IN. 1420 00:47:21,960 --> 00:47:23,960 >>YOU'RE DEFINITELY IN NOW. 1421 00:47:23,960 --> 00:47:25,640 >>YEAH, I'M IN. 1422 00:47:25,640 --> 00:47:30,480 AND WE'VE LIVED OUR LIFE THAT 1423 00:47:30,480 --> 00:47:31,800 WAY. 1424 00:47:31,800 --> 00:47:34,000 I KNEW WERE THINGS COMING DOWN 1425 00:47:34,000 --> 00:47:35,640 THE ROAD BUT ONLY SO MUCH I 1426 00:47:35,640 --> 00:47:38,560 COULD KNOW, FOR ALL MY KIDS BUT 1427 00:47:38,560 --> 00:47:40,560 MAINLY SEAN, ONLY SO MUCH I 1428 00:47:40,560 --> 00:47:41,240 COULD KNOW. 1429 00:47:41,240 --> 00:47:43,040 I WOULD LEARN AS HE GOT OLDER. 1430 00:47:43,040 --> 00:47:47,160 I GUESS THAT'S PART OF THIS. 1431 00:47:47,160 --> 00:47:47,960 THAT'S WHERE WE'RE AT. 1432 00:47:47,960 --> 00:47:51,200 >>I THINK YOU TOUCHED ON AN 1433 00:47:51,200 --> 00:47:52,880 IMPORTANT POINT THERE, AND 1434 00:47:52,880 --> 00:47:55,960 THAT'S HOW WE HANDLE 1435 00:47:55,960 --> 00:47:56,800 COMMUNICATION. 1436 00:47:56,800 --> 00:47:58,920 IN TERMS OF DISSEMINATION TO 1437 00:47:58,920 --> 00:48:00,360 DIFFERENT AGE POPULATIONS, LIKE 1438 00:48:00,360 --> 00:48:04,040 YOU SAID BEFORE, WHEN YOU WERE 1439 00:48:04,040 --> 00:48:05,400 YOUNGER, PEDIATRICIAN WAS 1440 00:48:05,400 --> 00:48:07,240 SPECIALIZED IN PROVIDING CARE. 1441 00:48:07,240 --> 00:48:11,400 BUT NOW THAT SEAN'S OLDER AND 1442 00:48:11,400 --> 00:48:12,920 IT'S PERHAPS A BIT MORE SPREAD 1443 00:48:12,920 --> 00:48:16,520 OUT IN TERMS OF ACCESSING THE 1444 00:48:16,520 --> 00:48:19,520 INFORMATION, SO PERHAPS WE 1445 00:48:19,520 --> 00:48:25,400 CAN -- IMPROVING IMPROVING TYPF 1446 00:48:25,400 --> 00:48:28,920 COMMUNICATION AND DISSEMINATION 1447 00:48:28,920 --> 00:48:30,200 THAT REACH ALL POPULATIONS MAY 1448 00:48:30,200 --> 00:48:32,520 BE BENEFICIAL. 1449 00:48:32,520 --> 00:48:34,160 AS DR. PTOMEY MENTIONED, 1450 00:48:34,160 --> 00:48:35,360 DS-CONNECT IS A GREAT STARTING 1451 00:48:35,360 --> 00:48:37,520 POINT AND WE CAN MAKE AVAILABLE 1452 00:48:37,520 --> 00:48:40,480 TO YOU, AND CAN YOU SHARE WITH 1453 00:48:40,480 --> 00:48:44,640 YOUR FRIENDS, SOME RESOURCES 1454 00:48:44,640 --> 00:48:45,960 THAT WILL BE AVAILABLE. 1455 00:48:45,960 --> 00:48:48,680 >>ERIKA, I HAVE A QUESTION FOR 1456 00:48:48,680 --> 00:48:49,400 LAUREN. 1457 00:48:49,400 --> 00:48:52,440 THIS TOUCHES ON IT. 1458 00:48:52,440 --> 00:48:53,520 REMOTE EVALUATION, HAVING PEOPLE 1459 00:48:53,520 --> 00:48:56,360 NOT HAVE TO COME INTO YOUR 1460 00:48:56,360 --> 00:48:57,760 CLINIC, THAT'S BEEN A GAME 1461 00:48:57,760 --> 00:48:58,000 CHANGER. 1462 00:48:58,000 --> 00:49:01,280 CAN YOU TALK ABOUT HOW THAT'S 1463 00:49:01,280 --> 00:49:02,760 REALLY ALLOWED YOU TO GET 1464 00:49:02,760 --> 00:49:04,240 RESEARCH TO MORE INDIVIDUALS BY 1465 00:49:04,240 --> 00:49:06,800 BEING ABLE TO HAVE THESE REMOTE 1466 00:49:06,800 --> 00:49:09,200 SESSIONS, USING ZOOM, THINGS 1467 00:49:09,200 --> 00:49:09,440 LIKE THAT? 1468 00:49:09,440 --> 00:49:10,800 >>YEAH. 1469 00:49:10,800 --> 00:49:12,680 I JOKE, WE USED REMOTE BEFORE 1470 00:49:12,680 --> 00:49:15,440 REMOTE WAS COOL. 1471 00:49:15,440 --> 00:49:17,480 WE STARTED A LONG TIME AGO. 1472 00:49:17,480 --> 00:49:21,680 WORKING IN THE DOWN SYNDROME 1473 00:49:21,680 --> 00:49:23,240 WORLD WE REALIZED TRANSPORTATION 1474 00:49:23,240 --> 00:49:27,880 IS AN ISSUE, IN PHYSICAL 1475 00:49:27,880 --> 00:49:28,520 ACTIVITY HAVING TRAINERS 1476 00:49:28,520 --> 00:49:30,280 SPECIALIZE IN WORKING WITH GAIT 1477 00:49:30,280 --> 00:49:31,560 INSTABILITY OR LOW MUSCLE TONE. 1478 00:49:31,560 --> 00:49:32,960 THEY DIDN'T KNOW WHAT THEY WERE 1479 00:49:32,960 --> 00:49:33,440 DOING. 1480 00:49:33,440 --> 00:49:35,080 YOU HAVE THE SOCIAL STIGMA AND 1481 00:49:35,080 --> 00:49:35,960 SOCIAL SUPPORT. 1482 00:49:35,960 --> 00:49:39,440 WHEN WE STARTED DOING THESE 1483 00:49:39,440 --> 00:49:40,760 GROUP REMOTE EXERCISE SESSIONS, 1484 00:49:40,760 --> 00:49:46,680 IT ALLOWED MORE PEOPLE TO -- 1485 00:49:46,680 --> 00:49:47,600 TOOK AWAY BARRIERS, ALLOWED 1486 00:49:47,600 --> 00:49:48,320 SOCIAL SUPPORT. 1487 00:49:48,320 --> 00:49:50,640 THE STUDY WE TALKED ABOUT 1488 00:49:50,640 --> 00:49:55,440 STARTED UP ABOUT -- IN JANUARY, 1489 00:49:55,440 --> 00:49:55,680 2020. 1490 00:49:55,680 --> 00:49:57,400 AND SO, YOU KNOW, BEFORE COVID 1491 00:49:57,400 --> 00:49:59,040 BUT AS SOON AS THAT HIT WE WERE 1492 00:49:59,040 --> 00:50:01,720 ABLE TO CONTINUE GOING JUST AS 1493 00:50:01,720 --> 00:50:02,040 PLANNED. 1494 00:50:02,040 --> 00:50:02,760 EVERYONE REALLY APPRECIATED IT 1495 00:50:02,760 --> 00:50:05,320 THEN BECAUSE THEY GOT THE SOCIAL 1496 00:50:05,320 --> 00:50:07,520 SUPPORT THEY WERE LACKING. 1497 00:50:07,520 --> 00:50:09,040 ONE OTHER THING, WE HAD EVERYONE 1498 00:50:09,040 --> 00:50:11,440 COMING INTO OUR LAB EVERY SIX 1499 00:50:11,440 --> 00:50:12,560 MONTHS FOR THESE TESTS. 1500 00:50:12,560 --> 00:50:15,280 AND, YOU KNOW, WE HAD TO MODIFY 1501 00:50:15,280 --> 00:50:19,240 OR PIVOT BECAUSE NOT EVERYONE 1502 00:50:19,240 --> 00:50:20,840 COULD COME IN, CONCERNS ABOUT 1503 00:50:20,840 --> 00:50:23,040 SOMEONE WHO DOESN'T WANT AN MRI 1504 00:50:23,040 --> 00:50:23,960 AND WORRYING ABOUT COVID? 1505 00:50:23,960 --> 00:50:27,760 SO WE WERE ABLE TO FIGURE OUT, 1506 00:50:27,760 --> 00:50:28,960 OKAY, OUR MAIN OUTCOMES, THAT WE 1507 00:50:28,960 --> 00:50:30,160 CARE ABOUT THE MOST, WE DON'T 1508 00:50:30,160 --> 00:50:31,840 HAVE TO HAVE SOMEONE IN THE LAB 1509 00:50:31,840 --> 00:50:32,000 FOR. 1510 00:50:32,000 --> 00:50:35,520 WE COULD OFFER KIND OF REMOTE 1511 00:50:35,520 --> 00:50:36,720 TESTING AS WELL. 1512 00:50:36,720 --> 00:50:39,360 AND IT REALLY DID, IT ALLOWED 1513 00:50:39,360 --> 00:50:40,440 SOMEONE LIKE SEAN WHO LIVES 2 1514 00:50:40,440 --> 00:50:41,960 1/2 HOURS AWAY FROM US TO BE 1515 00:50:41,960 --> 00:50:43,200 ABLE TO JOIN THE STUDY. 1516 00:50:43,200 --> 00:50:45,600 WE'VE HAD PEOPLE FROM WESTERN 1517 00:50:45,600 --> 00:50:47,360 KANSAS, FROM SOUTHERN MISSOURI 1518 00:50:47,360 --> 00:50:53,400 AND ARKANSAS JOIN THE STUDY. 1519 00:50:53,400 --> 00:50:55,240 AND BE ABLE TO GET THIS 1520 00:50:55,240 --> 00:50:56,880 INTERVENTION, IMPORTANT AS WE 1521 00:50:56,880 --> 00:50:58,680 CONTINUE TO DO RESEARCH. 1522 00:50:58,680 --> 00:51:00,240 HOW DO WE ACCESS EVERYONE? 1523 00:51:00,240 --> 00:51:04,680 HOW DO WE MAKE SURE EVERYONE HAS 1524 00:51:04,680 --> 00:51:05,920 THE SAME AVAILABILITY TO JOIN 1525 00:51:05,920 --> 00:51:07,600 THESE REALLY NICE RESEARCH 1526 00:51:07,600 --> 00:51:11,960 STUDIES AND GET THE MOST 1527 00:51:11,960 --> 00:51:14,440 STATE-OF-THE-ART TREATMENT AND 1528 00:51:14,440 --> 00:51:16,160 BE INCLUDED. 1529 00:51:16,160 --> 00:51:20,120 >>I THINK THAT'S A GREAT POINT 1530 00:51:20,120 --> 00:51:21,400 BECAUSE -- WITH THAT REACH I'M 1531 00:51:21,400 --> 00:51:23,720 SURE YOU'RE ABLE TO REACH A MORE 1532 00:51:23,720 --> 00:51:26,880 DIVERSE STUDY POPULATION AS 1533 00:51:26,880 --> 00:51:28,200 WELL. 1534 00:51:28,200 --> 00:51:32,080 THAT'S HISTORICALLY BEEN 1535 00:51:32,080 --> 00:51:32,760 UNDERREPRESENTED, GEOGRAPHICALLY 1536 00:51:32,760 --> 00:51:34,840 OR OTHERWISE. 1537 00:51:34,840 --> 00:51:37,680 I HAVE A QUESTION. 1538 00:51:37,680 --> 00:51:39,200 I'LL PIGGYBACK OFF LAURIE'S 1539 00:51:39,200 --> 00:51:40,640 QUESTION TO DR. PTOMEY. 1540 00:51:40,640 --> 00:51:42,080 THE SAME QUESTION I PRESENTED 1541 00:51:42,080 --> 00:51:43,720 WITH LISA AND SEAN, IF THERE'S 1542 00:51:43,720 --> 00:51:48,120 ANY FEEDBACK THAT YOU COULD 1543 00:51:48,120 --> 00:51:48,880 PROVIDE TO RESEARCHERS ABOUT 1544 00:51:48,880 --> 00:51:52,600 CLINICAL TRIALS, WHAT WOULD YOU 1545 00:51:52,600 --> 00:51:53,520 LIKE THEM TO KNOW? 1546 00:51:53,520 --> 00:51:55,080 >>YOU KNOW, I THINK THE 1547 00:51:55,080 --> 00:51:56,400 BIGGEST THING WHEN DOING A 1548 00:51:56,400 --> 00:51:57,520 CLINICAL TRIAL, ESPECIALLY FOR 1549 00:51:57,520 --> 00:51:59,920 INDIVIDUALS WITH DOWN SYNDROME, 1550 00:51:59,920 --> 00:52:01,360 MAKING SURE IT'S A CLINICAL 1551 00:52:01,360 --> 00:52:03,080 TRIAL FOR INDIVIDUALS WITH DOWN 1552 00:52:03,080 --> 00:52:03,360 SYNDROME. 1553 00:52:03,360 --> 00:52:05,200 YOU HAVE TO LOOK AT THAT PERSON, 1554 00:52:05,200 --> 00:52:09,760 WHAT ARE THEIR UNIQUE NEEDS, 1555 00:52:09,760 --> 00:52:11,880 WHAT WILL THEY ENJOY, WHAT MAKES 1556 00:52:11,880 --> 00:52:13,160 SOMETHING WORTHWHILE TO DO? 1557 00:52:13,160 --> 00:52:15,480 THAT'S ONE THING WE SPENT A LONG 1558 00:52:15,480 --> 00:52:16,200 TIME DOING, FIGURING OUT WHAT'S 1559 00:52:16,200 --> 00:52:18,440 GOING TO BE THE BEST FOR THIS 1560 00:52:18,440 --> 00:52:18,680 PERSON. 1561 00:52:18,680 --> 00:52:20,400 AND MAKE SURE IT'S SAFE FOR THIS 1562 00:52:20,400 --> 00:52:20,640 PERSON. 1563 00:52:20,640 --> 00:52:24,000 AND I THINK THAT HELPS A LOT OF 1564 00:52:24,000 --> 00:52:25,560 COMING UP WITH SUCCESSFUL 1565 00:52:25,560 --> 00:52:26,040 INTERVENTION. 1566 00:52:26,040 --> 00:52:27,760 REALLY ALSO LOOKING AT WHAT DO 1567 00:52:27,760 --> 00:52:30,160 WE NEED OF THE CAREGIVER, MAKING 1568 00:52:30,160 --> 00:52:31,240 SURE THAT'S CLEAR, YOU HAVE TO 1569 00:52:31,240 --> 00:52:33,120 CONSIDER THEM BOTH, AS LISA 1570 00:52:33,120 --> 00:52:39,040 WOULD SAY, IT'S NORMALLY A TEAM. 1571 00:52:39,040 --> 00:52:40,560 AND KINDS OF KNOWING, SETTING 1572 00:52:40,560 --> 00:52:43,720 OUT EXPECTATIONS AHEAD OF TIME. 1573 00:52:43,720 --> 00:52:45,200 THE BIGGEST THING FOR RESEARCHES 1574 00:52:45,200 --> 00:52:47,480 AND OTHER PEOPLE, IN TERMS OF 1575 00:52:47,480 --> 00:52:50,320 RECRUITMENT, HOW YOU GET IN, ONE 1576 00:52:50,320 --> 00:52:53,520 THING WE'VE BEEN COGNIZANT ABOUT 1577 00:52:53,520 --> 00:52:55,040 IS MAKING COMMUNITY 1578 00:52:55,040 --> 00:52:58,640 PARTNERSHIPS. 1579 00:52:58,640 --> 00:53:00,040 WORKING AS A TEAM, WHAT CAN WE 1580 00:53:00,040 --> 00:53:03,080 GIVE BACK TO THE COMMUNITY AND 1581 00:53:03,080 --> 00:53:04,400 BE DOING, OUR PART? 1582 00:53:04,400 --> 00:53:05,840 THAT MAKES A DIFFERENCE TOO. 1583 00:53:05,840 --> 00:53:08,600 WE HAVE A GREAT GROUP HERE, DOWN 1584 00:53:08,600 --> 00:53:10,160 SYNDROME INNOVATION IN KANSAS 1585 00:53:10,160 --> 00:53:10,800 CITY, SERVING INDIVIDUALS WITH 1586 00:53:10,800 --> 00:53:12,120 DOWN SYNDROME. 1587 00:53:12,120 --> 00:53:13,680 THEY ARE WONDERFUL. 1588 00:53:13,680 --> 00:53:14,880 WE'VE BEEN PARTNERING TO PROVIDE 1589 00:53:14,880 --> 00:53:17,080 THEM SERVICES AND THEY HAVE BEEN 1590 00:53:17,080 --> 00:53:18,320 HELPING IN RESEARCH STUDIES. 1591 00:53:18,320 --> 00:53:22,200 I THINK SOME OF THOSE KEY 1592 00:53:22,200 --> 00:53:23,720 PARTNERSHIPS ARE -- YOU HAVE TO 1593 00:53:23,720 --> 00:53:24,040 HAVE. 1594 00:53:24,040 --> 00:53:25,720 AND YOU ALWAYS HAVE TO REMEMBER, 1595 00:53:25,720 --> 00:53:28,920 IT'S NOT JUST WHAT CAN I GET BUT 1596 00:53:28,920 --> 00:53:32,080 WHAT CAN I GIVE. 1597 00:53:32,080 --> 00:53:35,200 >>I THINK THAT'S AN EXCELLENT 1598 00:53:35,200 --> 00:53:35,600 POINT. 1599 00:53:35,600 --> 00:53:42,280 SOMETHING I THINK CAN OFTENTIMES 1600 00:53:42,280 --> 00:53:42,640 BE FORGOTTEN. 1601 00:53:42,640 --> 00:53:43,600 >>I AGREE COMPLETELY. 1602 00:53:43,600 --> 00:53:45,120 I'M LOOKING AT OUR TIME TO MAKE 1603 00:53:45,120 --> 00:53:51,000 SURE THAT MAYBE WE'D LIKE TO 1604 00:53:51,000 --> 00:53:53,600 GIVE LISA AND SEAN THE LAST 1605 00:53:53,600 --> 00:53:55,080 WORDS, WHAT YOU WOULD LIKE TO 1606 00:53:55,080 --> 00:53:57,680 LET FOLKS KNOW? 1607 00:53:57,680 --> 00:54:03,440 >>ANYTHING YOU WANT TO SAY? 1608 00:54:03,440 --> 00:54:04,160 >>MORE FAMILY. 1609 00:54:04,160 --> 00:54:07,880 >>HE LOVES LIST FAMILY. 1610 00:54:07,880 --> 00:54:09,800 >>A SHOUT OUT, SEAN. 1611 00:54:09,800 --> 00:54:10,680 >>AND HIS MOM? 1612 00:54:10,680 --> 00:54:11,840 >>AND BEST FRIEND. 1613 00:54:11,840 --> 00:54:13,560 >>HIS BEST FRIEND ALMOST GOT 1614 00:54:13,560 --> 00:54:17,640 IN THE STUDY BUT THEY GOT TOO 1615 00:54:17,640 --> 00:54:17,840 BUSY. 1616 00:54:17,840 --> 00:54:20,400 BUT I THINK LIKE DR. LAUREN WAS 1617 00:54:20,400 --> 00:54:24,960 SAYING, THE REMOTE I THINK IS 1618 00:54:24,960 --> 00:54:25,200 AWESOME. 1619 00:54:25,200 --> 00:54:27,920 I MEAN, I THINK YOU GUYS COULD 1620 00:54:27,920 --> 00:54:29,440 REALLY -- I MEAN, THINK THAT'S 1621 00:54:29,440 --> 00:54:29,840 KEY. 1622 00:54:29,840 --> 00:54:31,080 IT WORKED WELL FOR US. 1623 00:54:31,080 --> 00:54:32,280 I APPRECIATE IT. 1624 00:54:32,280 --> 00:54:35,880 I KEEP SAYING I APPRECIATE SO 1625 00:54:35,880 --> 00:54:36,960 MUCH THE SUPPORT. 1626 00:54:36,960 --> 00:54:38,400 EVEN THEY HAVE PEOPLE COMING 1627 00:54:38,400 --> 00:54:41,440 HERE TO DO LIKE SEAN'S THREE 1628 00:54:41,440 --> 00:54:43,200 MONTH AND SIX MONTHS CHECK-INS. 1629 00:54:43,200 --> 00:54:45,640 WE DON'T EVEN HAVE TO DRIVE TO 1630 00:54:45,640 --> 00:54:48,160 KANSAS CITY WHICH IN THE 1631 00:54:48,160 --> 00:54:48,760 BEGINNING I THOUGHT WE WERE 1632 00:54:48,760 --> 00:54:50,560 GOING TO BE DOING. 1633 00:54:50,560 --> 00:54:53,400 EVEN THAT HAS BEEN EVEN MORE 1634 00:54:53,400 --> 00:54:54,280 HELPFUL TO US. 1635 00:54:54,280 --> 00:54:59,000 SO I CAN'T SAY ENOUGH HOW GREAT 1636 00:54:59,000 --> 00:55:02,320 THIS FIRST STUDY FOR US HAS 1637 00:55:02,320 --> 00:55:02,920 BEEN. 1638 00:55:02,920 --> 00:55:04,160 SO, IF ANYBODY IS QUESTIONING 1639 00:55:04,160 --> 00:55:06,560 LIKE IF THIS IS WHAT YOU'RE 1640 00:55:06,560 --> 00:55:08,120 WANTING TO DECIDE, TO DECIDE IF 1641 00:55:08,120 --> 00:55:09,320 YOU'RE GOING TO PARTICIPATE IN 1642 00:55:09,320 --> 00:55:10,600 ONE, GIVE IT A TRY. 1643 00:55:10,600 --> 00:55:13,240 THAT'S WHAT I WOULD SAY. 1644 00:55:13,240 --> 00:55:14,800 AND I DIDN'T EVEN KNOW YOU COULD 1645 00:55:14,800 --> 00:55:16,760 GET OUT ONCE YOU GOT IN. 1646 00:55:16,760 --> 00:55:21,240 SO WHY WOULDN'T YOU TRY? 1647 00:55:21,240 --> 00:55:23,680 SO THERE YOU GO. 1648 00:55:23,680 --> 00:55:26,720 >>ERIKA, WE HAVE ONE QUESTION 1649 00:55:26,720 --> 00:55:29,680 IN THE CHAT THAT MAYBE TYPED AN 1650 00:55:29,680 --> 00:55:32,600 ANSWER TO, A DR. PTOMEY, WHAT 1651 00:55:32,600 --> 00:55:34,360 ADVICE WOULD YOU GIVE TO 1652 00:55:34,360 --> 00:55:34,800 FAMILIES CONSIDERING 1653 00:55:34,800 --> 00:55:35,720 PARTICIPATING IN CLINICAL TRIALS 1654 00:55:35,720 --> 00:55:37,720 WITH THEIR LOVED ONES WITH DOWN 1655 00:55:37,720 --> 00:55:38,320 SYNDROME, ESPECIALLY FAMILIES 1656 00:55:38,320 --> 00:55:42,440 WHO DO NOT SPEAK ENGLISH? 1657 00:55:42,440 --> 00:55:44,320 >>I WAS TYPING AN ANSWER FOR 1658 00:55:44,320 --> 00:55:48,960 THIS BUT HAPPY TO DO IT OUT LOUD 1659 00:55:48,960 --> 00:55:49,200 INSTEAD. 1660 00:55:49,200 --> 00:55:50,600 I THINK WHAT YOU WERE SAYING, 1661 00:55:50,600 --> 00:55:52,560 I'M GOING TO GET TO THE HEART OF 1662 00:55:52,560 --> 00:55:54,240 THE MATTER OF FAMILIES WHO DON'T 1663 00:55:54,240 --> 00:55:56,840 SPEAK ENGLISH. 1664 00:55:56,840 --> 00:55:58,720 THERE'S A COUPLE THINGS WENT OUT 1665 00:55:58,720 --> 00:56:02,760 TO A LOT OF GROUPS, THEY WILL 1666 00:56:02,760 --> 00:56:03,880 HAVE TRANSLATORS TO TRANSLATE 1667 00:56:03,880 --> 00:56:09,320 MATERIALS OR ALREADY HAVE 1668 00:56:09,320 --> 00:56:10,320 MATERIALS IN SPANISH. 1669 00:56:10,320 --> 00:56:12,600 IN AGING A LOT HAVE BEEN ADAPT 1670 00:56:12,600 --> 00:56:17,840 AND ARE AVAILABLE, WHICH HELPS. 1671 00:56:17,840 --> 00:56:19,600 OUR GROUP, MOST OF THEM DON'T 1672 00:56:19,600 --> 00:56:20,960 SPEAK SPANISH. 1673 00:56:20,960 --> 00:56:24,000 SO WHEN WE'VE HAD INDIVIDUALS 1674 00:56:24,000 --> 00:56:26,320 WHO ARE ONLY SPANISH SPEAKING, 1675 00:56:26,320 --> 00:56:28,280 THE CAREGIVER OR LOVED ONE IS, 1676 00:56:28,280 --> 00:56:30,840 DO YOU HAVE A FRIEND THAT CAN 1677 00:56:30,840 --> 00:56:31,920 HELP TRANSLATE OR ANOTHER FAMILY 1678 00:56:31,920 --> 00:56:32,240 MEMBERS? 1679 00:56:32,240 --> 00:56:35,760 MOST OF THE TIME WE'VE BEEN ABLE 1680 00:56:35,760 --> 00:56:37,280 TO FIND SOMEONE. 1681 00:56:37,280 --> 00:56:38,920 WE INCLUDE THEM, JUST HAVE HAVE 1682 00:56:38,920 --> 00:56:40,920 A WAY TO BRIDGE THE LANGUAGE 1683 00:56:40,920 --> 00:56:41,480 BARRIER. 1684 00:56:41,480 --> 00:56:42,760 BUT MOST PEOPLE ARE TRYING TO DO 1685 00:56:42,760 --> 00:56:44,000 THAT AND MAKE IT FEASIBLE 1686 00:56:44,000 --> 00:56:47,160 BECAUSE WE WANT TO INCLUDE 1687 00:56:47,160 --> 00:56:47,440 EVERYBODY. 1688 00:56:47,440 --> 00:56:50,560 BUT I WOULD SAY TOO, DON'T BE 1689 00:56:50,560 --> 00:56:51,760 AFRAID OF REACHING OUT, DON'T BE 1690 00:56:51,760 --> 00:56:53,240 AFRAID TO FIND OUT WHAT SERVICES 1691 00:56:53,240 --> 00:56:54,400 WOULD BE AVAILABLE IF YOU JOIN 1692 00:56:54,400 --> 00:56:56,800 THE STUDY. 1693 00:56:56,800 --> 00:56:58,120 WOULD THEY TRANSLATE MATERIALS? 1694 00:56:58,120 --> 00:56:59,640 WOULD THEY HAVE SOMEONE FAMILIAR 1695 00:56:59,640 --> 00:57:00,880 WITH YOUR CULTURE? 1696 00:57:00,880 --> 00:57:03,240 YOU KNOW, AND WHAT CAN BE DONE? 1697 00:57:03,240 --> 00:57:04,560 BECAUSE A LOT OF TIMES 1698 00:57:04,560 --> 00:57:06,000 ACCOMMODATIONS CAN BE MADE. 1699 00:57:06,000 --> 00:57:09,680 SO DON'T BE AFRAID TO REACH OUT, 1700 00:57:09,680 --> 00:57:11,280 ASK QUESTIONS, AND SEE WHAT YOU 1701 00:57:11,280 --> 00:57:15,720 CAN DO. 1702 00:57:15,720 --> 00:57:17,360 >>I THINK THAT'S AN EXCELLENT 1703 00:57:17,360 --> 00:57:19,560 POINT AND THANK YOU, DR. PTOMEY. 1704 00:57:19,560 --> 00:57:24,480 WE WANT TO THANK ALL OF OUR 1705 00:57:24,480 --> 00:57:26,400 PARTICIPANTS FOR JOINING. 1706 00:57:26,400 --> 00:57:29,000 LISA, SEAN, THANK YOU SO VERY 1707 00:57:29,000 --> 00:57:29,200 MUCH. 1708 00:57:29,200 --> 00:57:30,960 WE APPRECIATE IT. 1709 00:57:30,960 --> 00:57:33,920 LAUREN, THANK YOU FOR YOUR TIME. 1710 00:57:33,920 --> 00:57:39,160 AND ON BEHALF OF THE INCLUDE 1711 00:57:39,160 --> 00:57:40,920 PROJECT HERE AT NIH I'LL TURN IT 1712 00:57:40,920 --> 00:57:43,280 OVER TO DR. LAURIE RYAN TO SAY 1713 00:57:43,280 --> 00:57:44,880 LAST WORDS BUT THANK YOU FOR 1714 00:57:44,880 --> 00:57:46,520 YOUR PARTICIPATION IN TODAY'S 1715 00:57:46,520 --> 00:57:46,720 WEBINAR. 1716 00:57:46,720 --> 00:57:52,440 >>I WILL ECHO EVERYBODY 1717 00:57:52,440 --> 00:57:53,960 ERIC -- EVERYTHING ERIKA SAID. 1718 00:57:53,960 --> 00:57:55,800 SEAN, LISA, THANK YOU. 1719 00:57:55,800 --> 00:57:56,920 LAUREN, YOU DID BREAK DOWN WHAT 1720 00:57:56,920 --> 00:57:58,000 IT'S LIKE TO PARTICIPATE IN 1721 00:57:58,000 --> 00:57:59,200 CLINICAL TRIALS, A GREAT 1722 00:57:59,200 --> 00:57:59,560 OVERVIEW. 1723 00:57:59,560 --> 00:58:03,240 WE CAN'T THANK YOU ENOUGH. 1724 00:58:03,240 --> 00:58:07,760 THIS WILL BE AVAILABLE ON VIDEO 1725 00:58:07,760 --> 00:58:08,960 ARCHIVE TO LOOK AT. 1726 00:58:08,960 --> 00:58:11,120 THANK YOU FOR YOUR TIME. 1727 00:58:11,120 --> 00:58:13,560 THIS HAS BEEN A WONDERFUL 1728 00:58:13,560 --> 00:58:13,800 WEBINAR. 1729 00:58:13,800 --> 00:58:14,440 >>HAVE A GREAT DAY, EVERYONE. 1730 00:58:14,440 --> 00:58:15,000 >>THANK YOU. 1731 00:58:15,000 --> 00:00:00,000 >>BYE.