1 00:00:06,043 --> 00:00:06,777 >> OKAY. 2 00:00:06,777 --> 00:00:08,446 GOOD MORNING. 3 00:00:08,446 --> 00:00:11,749 I'M WALTER KOROSHETZ THE 4 00:00:11,749 --> 00:00:13,918 DIRECTOR OF THE INSTITUTE OF 5 00:00:13,918 --> 00:00:19,090 DISORDERS AND STROKE AND THIS IS 6 00:00:19,090 --> 00:00:19,957 THE ALZHEIMER'S DISEASE-RELATED 7 00:00:19,957 --> 00:00:21,559 DIMENTIAS SUMMIT FOR 2025. 8 00:00:21,559 --> 00:00:23,261 CAN EVERYBODY HEAR ME OKAY? 9 00:00:23,261 --> 00:00:25,930 THUMBS UP, GREAT. 10 00:00:25,930 --> 00:00:29,901 I WANT TO THANK THE PEOPLE WHO 11 00:00:29,901 --> 00:00:32,570 DID ALL THE WORK INCLUDING 12 00:00:32,570 --> 00:00:33,638 PEOPLE HERE AT NINDS AND 13 00:00:33,638 --> 00:00:36,007 NATIONAL INSTITUTE OF AGING AND 14 00:00:36,007 --> 00:00:38,809 PARTICULARLY THE WORKING GROUPS 15 00:00:38,809 --> 00:00:40,411 YOU'LL HEAR FROM TODAY WHO 16 00:00:40,411 --> 00:00:43,414 BROUGHT TO YOU RESEARCH 17 00:00:43,414 --> 00:00:43,981 RECOMMENDATIONS FOR YOUR 18 00:00:43,981 --> 00:00:46,784 CONSIDERATION AND FOR INPUT AND 19 00:00:46,784 --> 00:00:52,089 THESE WILL THEN BE PRESENTED TO 20 00:00:52,089 --> 00:00:56,661 THE NINDS COUNCIL FOR FORMAL 21 00:00:56,661 --> 00:01:00,498 ADOPTION AND THANKS TO DR. POZEN 22 00:01:00,498 --> 00:01:01,465 SHORE CHAIRING THE WORK GROUPS 23 00:01:01,465 --> 00:01:03,567 THAT LED UP TO THE SUMMIT. 24 00:01:03,567 --> 00:01:07,171 SO THIS IS THE SLIDE THAT JUST 25 00:01:07,171 --> 00:01:12,643 REINFORCES WHAT WE ALL KNOW THAT 26 00:01:12,643 --> 00:01:15,046 THE PUBLIC BURDEN AND SUFFERING 27 00:01:15,046 --> 00:01:17,915 DUE TO DEMENTIA IS INCREASING 28 00:01:17,915 --> 00:01:20,885 AROUND THE WORLD AND THIS IS 29 00:01:20,885 --> 00:01:23,955 FROM THE DISEASE STUDY AND THE 30 00:01:23,955 --> 00:01:27,425 INCREASE IN BURDEN OF DISEASE IS 31 00:01:27,425 --> 00:01:29,327 PRIMARILY DRIVEN BY THE AGING OF 32 00:01:29,327 --> 00:01:30,528 THE POPULATION. 33 00:01:30,528 --> 00:01:33,497 SO IF YOU LOOK AT THE AGE 34 00:01:33,497 --> 00:01:35,266 STANDARD PREVALENCE IT'S FAIRLY 35 00:01:35,266 --> 00:01:36,233 FLAT, SOME INCREASE BUT PRETTY 36 00:01:36,233 --> 00:01:38,369 FLAT AND IF YOU LOOK ON THE 37 00:01:38,369 --> 00:01:41,639 RIGHT-HAND SIDE YOU SEE THE 38 00:01:41,639 --> 00:01:46,043 NUMBERS OF PEOPLE AFFECTED OVER 39 00:01:46,043 --> 00:01:50,414 TIME AS THE POPULATION AGES. 40 00:01:50,414 --> 00:01:52,083 SO, THAT'S TRUE GLOBALLY AND 41 00:01:52,083 --> 00:01:54,585 CERTAINLY TRUE IN THE UNITED 42 00:01:54,585 --> 00:01:57,254 STATES AND WHY ADDRESSING 43 00:01:57,254 --> 00:01:58,322 ALZHEIMER'S DISEASE AND RELATED 44 00:01:58,322 --> 00:02:01,425 DEMENTIA IS A NATIONAL PRIORITY. 45 00:02:01,425 --> 00:02:02,460 THE NATIONAL PLAN TO ADDRESS 46 00:02:02,460 --> 00:02:05,463 THIS BURDEN OF ILLNESS WAS 47 00:02:05,463 --> 00:02:07,031 ORIGINALLY RELEASED IN 2012. 48 00:02:07,031 --> 00:02:09,066 IT'S UPDATED ANNUALLY. 49 00:02:09,066 --> 00:02:10,868 IT CALLS FOR ACTION TO 50 00:02:10,868 --> 00:02:11,535 ACCELERATE RESEARCH AND IMPROVE 51 00:02:11,535 --> 00:02:13,504 CARE IN SERVICES FOR PEOPLE 52 00:02:13,504 --> 00:02:17,641 LIVING WITH DEMENTIA AND THAT'S 53 00:02:17,641 --> 00:02:20,644 DEFINED FOR THESE PURPOSE AS 54 00:02:20,644 --> 00:02:22,246 ALZHEIMER'S DISEASE, VASCULAR 55 00:02:22,246 --> 00:02:26,150 COGNITIVE IMPAIRMENT AND LEWY 56 00:02:26,150 --> 00:02:28,052 BODY DEMENTIA WHICH IS THE 57 00:02:28,052 --> 00:02:31,022 CONDITION THAT AFFECTS PEOPLE 58 00:02:31,022 --> 00:02:32,423 WITH PARKINSON'S WHO THEN 59 00:02:32,423 --> 00:02:34,025 DEVELOP DEMENTIA. 60 00:02:34,025 --> 00:02:35,359 SOME PEOPLE WITH THIS DISEASE 61 00:02:35,359 --> 00:02:37,595 DEVELOP DEMENTIA EVEN BEFORE THE 62 00:02:37,595 --> 00:02:40,898 PARKINSON'S SYMPTOMS AND FRONTAL 63 00:02:40,898 --> 00:02:43,434 TEMPORAL DEMENTIA AND THE BURDEN 64 00:02:43,434 --> 00:02:44,268 OF ILLNESS FALLS CLEARLY ON THE 65 00:02:44,268 --> 00:02:48,639 PEOPLE AFFECTED BUT ALSO ON THE 66 00:02:48,639 --> 00:02:52,109 FAMILIES WHO CARE FOR THESE 67 00:02:52,109 --> 00:03:00,284 FOLKS. 68 00:03:00,284 --> 00:03:03,120 THE NATIONAL ALZHEIMER'S ACT WAS 69 00:03:03,120 --> 00:03:05,156 AUTHORIZED IN 2011 AND HELD BY 70 00:03:05,156 --> 00:03:07,925 HEALTH AND HUMAN SERVICES AND IN 71 00:03:07,925 --> 00:03:10,094 EVALUATION WITH NIH AND OTHER 72 00:03:10,094 --> 00:03:11,796 AGENCIES CONTRIBUTING AND 73 00:03:11,796 --> 00:03:13,564 INCLUDES SIX KEY GOALS COVERING 74 00:03:13,564 --> 00:03:15,266 RISK REDUCTION, WHICH IS ALWAYS 75 00:03:15,266 --> 00:03:17,468 THE ONE THAT'S GOING TO GIVE YOU 76 00:03:17,468 --> 00:03:18,836 THE GREATEST PUBLIC HEALTH 77 00:03:18,836 --> 00:03:22,206 IMPACT IN TERMS OF PREVENTION, 78 00:03:22,206 --> 00:03:24,375 TREATMENT CARE SUPPORT AND 79 00:03:24,375 --> 00:03:27,578 PUBLIC AWARENESS. 80 00:03:27,578 --> 00:03:29,680 THE ADVISORY COUNCIL ON 81 00:03:29,680 --> 00:03:30,948 ALZHEIMER'S RESEARCH CARE AND 82 00:03:30,948 --> 00:03:32,616 SERVICES MEETS REGULARLY. 83 00:03:32,616 --> 00:03:36,654 IT HAS 12 PUBLIC MEMBERS 84 00:03:36,654 --> 00:03:38,122 REPRESENTING PATIENT ADVOCATES, 85 00:03:38,122 --> 00:03:40,357 CAREGIVERS, PROVIDERS, STATE AND 86 00:03:40,357 --> 00:03:44,662 LOCAL GOVERNMENT REPS, 87 00:03:44,662 --> 00:03:46,097 RESEARCHERS, VOLUNTARY HEALTH 88 00:03:46,097 --> 00:03:48,365 ASSOCIATION REPRESENTATIVES AND 89 00:03:48,365 --> 00:03:50,701 CHAIRED CURRENTLY BY DR. MIMS 90 00:03:50,701 --> 00:03:52,236 AND IT'S BEEN A PLEASURE TO WORK 91 00:03:52,236 --> 00:03:53,971 WITH ADRIAN OVER THE YEARS. 92 00:03:53,971 --> 00:03:56,006 YOU SEE ON THE RIGHT SIDE THE 93 00:03:56,006 --> 00:03:59,243 NUMBER OF FEDERAL AGENCIES 94 00:03:59,243 --> 00:04:01,312 INVOLVED IN THE ADVISORY COUNCIL 95 00:04:01,312 --> 00:04:02,480 ON ALZHEIMER'S RESEARCH CARE AND 96 00:04:02,480 --> 00:04:07,017 SERVICES AND FOR EACH THERE'S A 97 00:04:07,017 --> 00:04:09,120 SUBCOMMITTEE THAT WORKS AS A 98 00:04:09,120 --> 00:04:11,355 COMMITTEE AND PREVENTION 99 00:04:11,355 --> 00:04:11,956 COMMITTEE AND RISK REDUCTION 100 00:04:11,956 --> 00:04:15,459 COMMITTEE. 101 00:04:15,459 --> 00:04:20,097 WHAT WE DO IS SAID THE ADRD 102 00:04:20,097 --> 00:04:22,032 MILESTONES AND WE DO THAT 103 00:04:22,032 --> 00:04:24,101 THROUGH PEOPLE WORKING BEHIND 104 00:04:24,101 --> 00:04:27,138 THE SCENES TO DEVELOP 105 00:04:27,138 --> 00:04:29,874 RECOMMENDATIONS THAT ARE THEN 106 00:04:29,874 --> 00:04:31,942 VETTED AT SUMMITS SUCH AS THE 107 00:04:31,942 --> 00:04:33,611 ONES WE'RE TALKING ABOUT. 108 00:04:33,611 --> 00:04:36,080 THERE ARE RESEARCH SUMMITS ON 109 00:04:36,080 --> 00:04:39,083 CARE AND SERVICES FOR PERSONS 110 00:04:39,083 --> 00:04:40,518 WITH DEMENTIA AND THEIR 111 00:04:40,518 --> 00:04:42,086 CAREGIVERS AND THEY'RE RAN BY 112 00:04:42,086 --> 00:04:44,555 THE NATIONAL INSTITUTES OF AGING 113 00:04:44,555 --> 00:04:46,657 AN ALZHEIMER'S RESEARCH SUMMIT 114 00:04:46,657 --> 00:04:48,659 AGAIN RAN BY THE NATIONAL 115 00:04:48,659 --> 00:04:49,860 INSTITUTE OF AGING AND NINDS 116 00:04:49,860 --> 00:04:54,231 RUNS THE ONE WE'RE TALKING ABOUT 117 00:04:54,231 --> 00:04:56,467 TODAY WHICH IS ALZHEIMER'S 118 00:04:56,467 --> 00:05:01,238 DISEASE RELATED RESEARCH SUMMIT. 119 00:05:01,238 --> 00:05:05,309 THE SUMMITS REFLECT CRITICAL 120 00:05:05,309 --> 00:05:06,410 SCIENTIFIC PRIORITIES AS BROUGHT 121 00:05:06,410 --> 00:05:09,547 TO THE FOREFRONT BY WORKING 122 00:05:09,547 --> 00:05:14,552 GROUPS THAT INCLUDE SCIENTISTS, 123 00:05:14,552 --> 00:05:17,555 CAREGIVERS AND HEALTH CARE 124 00:05:17,555 --> 00:05:18,389 PROVIDERS. 125 00:05:18,389 --> 00:05:21,458 LEADING UP TO THE SUMMIT 126 00:05:21,458 --> 00:05:24,094 SUBCOMMITTEES WORK ON 127 00:05:24,094 --> 00:05:25,062 PARTICULARLY DEEP DIVES INTO 128 00:05:25,062 --> 00:05:26,897 AREAS THOUGHT TO BE ESPECIALLY 129 00:05:26,897 --> 00:05:30,634 IMPORTANT IN THEIR SUMMITS AND 130 00:05:30,634 --> 00:05:33,137 STARTING TODAY THOSE PRIORITIES 131 00:05:33,137 --> 00:05:35,573 FOR THE ALZHEIMER'S DISEASE 132 00:05:35,573 --> 00:05:38,642 RELATED SUMMIT WILL BE REPORTED 133 00:05:38,642 --> 00:05:40,177 OUT FOR YOUR INPUT AND 134 00:05:40,177 --> 00:05:43,981 CONSIDERATION. 135 00:05:43,981 --> 00:05:47,051 THIS PROFESSIONAL -- THESE PLANS 136 00:05:47,051 --> 00:05:52,156 ALL GO INTO DEVELOPING THE 137 00:05:52,156 --> 00:05:53,624 ANNUAL ADRD PROFESSIONAL 138 00:05:53,624 --> 00:05:57,528 JUDGMENT BUDGET AS WELL AS THE 139 00:05:57,528 --> 00:06:00,164 2024 ADRD PROGRESS REPORT. 140 00:06:00,164 --> 00:06:01,832 THAT PROFESSIONAL JUDGMENT 141 00:06:01,832 --> 00:06:08,639 BUDGET GOES STRAIGHT TO HHS AND 142 00:06:08,639 --> 00:06:12,343 THEN IS CONSIDERED BY THE 143 00:06:12,343 --> 00:06:19,216 CONGRESS AND SET BY 144 00:06:19,216 --> 00:06:28,659 APPROPRIATION OF CONGRESS AND 145 00:06:28,659 --> 00:06:31,695 THEY ESTIMATE THE ANNUAL BUDGET 146 00:06:31,695 --> 00:06:33,497 FUNDING NEEDED TO LEVERAGE 147 00:06:33,497 --> 00:06:34,465 SCIENTIFIC OPPORTUNITIES IN 148 00:06:34,465 --> 00:06:36,634 DEMENTIA RESEARCH AND THE 149 00:06:36,634 --> 00:06:37,434 CONGRESS HAS BEEN EXTREMELY 150 00:06:37,434 --> 00:06:39,737 GENEROUS IN TERMS OF INVESTING 151 00:06:39,737 --> 00:06:41,572 IN THE FUTURE OF THIS RESEARCH 152 00:06:41,572 --> 00:06:44,642 OVER THE LAST SIX OR SEVEN 153 00:06:44,642 --> 00:06:47,344 YEARS. 154 00:06:47,344 --> 00:06:50,247 I WOULD SAY THE ANNUAL REPORT IS 155 00:06:50,247 --> 00:06:56,654 NOW AVAILABLE ON THE WEBSITE. 156 00:06:56,654 --> 00:07:00,591 IN TERMS OF ALZHEIMER'S 157 00:07:00,591 --> 00:07:03,260 DISEASE-RELATED DIMENTIAS WHAT 158 00:07:03,260 --> 00:07:06,196 WE CONCENTRATE ON ARE THE 159 00:07:06,196 --> 00:07:08,666 VASCULAR CONTRIBUTIONS AND WEAR 160 00:07:08,666 --> 00:07:13,504 AND TEAR ON THE BLOOD VESSELS IN 161 00:07:13,504 --> 00:07:17,508 THE BRAIN CAUSING ISSUES SUCH AS 162 00:07:17,508 --> 00:07:18,909 STROK 163 00:07:18,909 --> 00:07:22,079 STROKES MANY TURN OUT TO BE SUB 164 00:07:22,079 --> 00:07:23,614 CLINICAL AND THEY SEEM TO BE 165 00:07:23,614 --> 00:07:25,883 RELATED TO DEVELOPING RISK OF 166 00:07:25,883 --> 00:07:26,917 COGNITIVE IMPAIRMENT DIM EN IS 167 00:07:26,917 --> 00:07:29,320 THAT OF AGING. 168 00:07:29,320 --> 00:07:31,055 THERE'S ALSO A VERY INTERESTING 169 00:07:31,055 --> 00:07:32,923 CONDITION THAT'S EXTREMELY 170 00:07:32,923 --> 00:07:34,091 COMMON WE CALL WHITE MATTER 171 00:07:34,091 --> 00:07:34,325 DISEASE. 172 00:07:34,325 --> 00:07:37,194 THIS IS USUALLY ASSOCIATED WITH 173 00:07:37,194 --> 00:07:39,663 CHANGES IN THE BLOOD VESSELS BUT 174 00:07:39,663 --> 00:07:44,268 THE WHITE MATTER ARE THE C 175 00:07:44,268 --> 00:07:49,907 CONNECTIONS BETWEEN THE BRAIN 176 00:07:49,907 --> 00:07:51,942 AREAS AND WE SEE ABNORMALITIES 177 00:07:51,942 --> 00:07:55,179 IN THE AREAS THAT COMPOSE THE 178 00:07:55,179 --> 00:07:55,412 WIRES. 179 00:07:55,412 --> 00:07:59,450 WE DON'T UNDERSTAND EXACTLY WHAT 180 00:07:59,450 --> 00:08:02,753 CAUSES THE CHANGES TO OCCUR BUT 181 00:08:02,753 --> 00:08:05,989 ALSO ASSOCIATED WHITE MATTER 182 00:08:05,989 --> 00:08:07,825 DISEASE WITH HYPERTENSION AND 183 00:08:07,825 --> 00:08:10,694 LEAD TO COGNITIVE IMPAIRMENT. 184 00:08:10,694 --> 00:08:15,232 LEWY BODY DEMENTIA ARE THE 185 00:08:15,232 --> 00:08:18,635 PATHOLOGICAL HALLMARK ARE LEWY 186 00:08:18,635 --> 00:08:29,179 BODIES AN AGGREGATE OF SINUCLEIN 187 00:08:30,681 --> 00:08:33,417 AND THEY DEVELOP MOTOR TROUBLE 188 00:08:33,417 --> 00:08:38,489 AND THE AREA OF LEWY BODY 189 00:08:38,489 --> 00:08:38,756 DIMENSION. 190 00:08:38,756 --> 00:08:46,296 FRONTAL TEMPORAL DEMENTIA AND 191 00:08:46,296 --> 00:08:47,731 OCCUR YOUNGER AND AFFECTS PEOPLE 192 00:08:47,731 --> 00:08:56,073 IN THEIR 50s AROUND 60s. 193 00:08:56,073 --> 00:08:58,208 CAUSES SOCIAL DECLINE IN 194 00:08:58,208 --> 00:08:58,809 BEHAVIOR AND LANGUAGE AND 195 00:08:58,809 --> 00:09:00,210 THEY'LL PRESENT TO A 196 00:09:00,210 --> 00:09:03,514 PSYCHIATRIST FIRST BECAUSE OF 197 00:09:03,514 --> 00:09:14,024 CHANGES IN THEIR BEHAVIOR AND 198 00:09:19,696 --> 00:09:26,069 ALSO SEEN IN AMYOTROPHIC LATERAL 199 00:09:26,069 --> 00:09:28,639 SCLEROSIS AND CORRELATION IN THE 200 00:09:28,639 --> 00:09:32,576 GENETIC FORMS AND IN THE OTHER 201 00:09:32,576 --> 00:09:33,644 FORMS OF FTD. 202 00:09:33,644 --> 00:09:36,413 A BIG AREA OF INVESTIGATION IS 203 00:09:36,413 --> 00:09:38,182 AROUND MIXED DEMENTIAS. 204 00:09:38,182 --> 00:09:39,616 WHEN SOMEONE LOOKS IN THE BRAIN 205 00:09:39,616 --> 00:09:42,586 OF PEOPLE WHO HAVE DIED WHO HAD 206 00:09:42,586 --> 00:09:44,588 DEMENTIA, THE OLDER YOU ARE THE 207 00:09:44,588 --> 00:09:48,158 MORE LIKELY YOU WILL HAVE A MIX 208 00:09:48,158 --> 00:09:50,027 OF MULTIPLE DIFFERENT CONDITIONS 209 00:09:50,027 --> 00:09:53,130 GOING ON TO CAUSE DEMENTIA AND 210 00:09:53,130 --> 00:09:54,731 THAT REALLY GETS THINGS 211 00:09:54,731 --> 00:09:57,167 COMPLICATED BECAUSE TREATMENTS 212 00:09:57,167 --> 00:09:58,569 WILL HAVE TO AFFECT ALL OR WILL 213 00:09:58,569 --> 00:10:00,170 HAVE TO HAVE SPECIFIC TREATMENTS 214 00:10:00,170 --> 00:10:02,139 FOR EACH OF THE DIFFERENT 215 00:10:02,139 --> 00:10:05,175 ETIOLOGIES THAT GO ON TO CREATE 216 00:10:05,175 --> 00:10:08,645 THE TROUBLE FOR THE PEOPLE AS 217 00:10:08,645 --> 00:10:14,384 THEY AGE. 218 00:10:14,384 --> 00:10:16,620 THAT'S A BIG AREA OF CONCERN AND 219 00:10:16,620 --> 00:10:25,896 WE'LL TALK MORE ABOUT THAT. 220 00:10:25,896 --> 00:10:28,732 WE'LL LOOK AT THE MECHANISMS 221 00:10:28,732 --> 00:10:29,633 CAUSALLY RELATED TO THE 222 00:10:29,633 --> 00:10:31,535 COGNITIVE IMPAIRMENT OF DEMENTIA 223 00:10:31,535 --> 00:10:33,337 BY THIS TIME OF BASIC RESEARCH. 224 00:10:33,337 --> 00:10:34,738 WE UNDERSTAND WHY WE CAN 225 00:10:34,738 --> 00:10:39,076 INTERVENE TO TRY TO REVERSE THE 226 00:10:39,076 --> 00:10:41,778 PROCESS THAT LEADS TO COGNITIVE 227 00:10:41,778 --> 00:10:42,312 IMPAIRMENT AND DEMENTIA. 228 00:10:42,312 --> 00:10:45,115 THAT'S ONE OF OUR BIG AREAS OF 229 00:10:45,115 --> 00:10:46,817 FOCUS AT THE NIH. 230 00:10:46,817 --> 00:10:50,354 BUT THE JOB IS NOT TO PUBLISH A 231 00:10:50,354 --> 00:10:52,656 LOT OF PAPERS AND END IT THERE. 232 00:10:52,656 --> 00:10:55,459 THE JOB IS TO MOVE FROM THE 233 00:10:55,459 --> 00:10:57,461 DISCOVERY IN THE LABORATORIES TO 234 00:10:57,461 --> 00:11:00,264 THE DEVELOPMENT OF THERAPEUTICS 235 00:11:00,264 --> 00:11:02,332 AND THAT REQUIRES UNDERSTANDING 236 00:11:02,332 --> 00:11:03,800 WHAT ARE TARGETS THAT COME FROM 237 00:11:03,800 --> 00:11:07,104 THE BASIC MECHANISMS OF DISEASE 238 00:11:07,104 --> 00:11:10,073 THAT COULD BE DRUGGABLE. 239 00:11:10,073 --> 00:11:11,308 INCLUDES DEVELOPMENT OF 240 00:11:11,308 --> 00:11:14,111 BIOMARKERS THAT CAN IDENTIFY 241 00:11:14,111 --> 00:11:15,145 PEOPLE WITH PARTICULAR 242 00:11:15,145 --> 00:11:16,413 ETIOLOGIES AS WE MENTIONED 243 00:11:16,413 --> 00:11:17,915 BEFORE. 244 00:11:17,915 --> 00:11:19,383 THERE MAY BE MULTIPLE 245 00:11:19,383 --> 00:11:19,683 ETIOLOGIES. 246 00:11:19,683 --> 00:11:20,918 WE NEED THE BIOMARKERS TO 247 00:11:20,918 --> 00:11:24,555 IDENTIFY WHO IS GOING TO RESPOND 248 00:11:24,555 --> 00:11:26,623 TO WHAT TYPE OF TREATMENT 249 00:11:26,623 --> 00:11:27,891 DEPENDING ON WHAT THE TARGET OF 250 00:11:27,891 --> 00:11:30,727 THAT TREATMENT IS. 251 00:11:30,727 --> 00:11:35,599 IN ADDITION BECAUSE DEMENTIA 252 00:11:35,599 --> 00:11:37,100 OCCURS SLOWLY OVER TIME A STUDY 253 00:11:37,100 --> 00:11:39,469 TO DEFINE A TREATMENT CANNOT 254 00:11:39,469 --> 00:11:41,905 RELY ON SAY LOOKING FOR SEVEN TO 255 00:11:41,905 --> 00:11:43,373 10 YEARS DOWN THE ROAD TO SEE 256 00:11:43,373 --> 00:11:44,341 HOW IT WORKS. 257 00:11:44,341 --> 00:11:47,311 WE NEED TO MAKE DECISIONS MUCH 258 00:11:47,311 --> 00:11:49,680 MORE QUICKLY IN TERMS OF WHAT 259 00:11:49,680 --> 00:11:52,549 TYPE OF DRUGS, SAY, FOR INSTANCE 260 00:11:52,549 --> 00:11:53,917 NEED TO GO INTO THOSE LONGER 261 00:11:53,917 --> 00:11:56,587 TRIALS AND THERE WE NEED 262 00:11:56,587 --> 00:11:58,255 BIOMARKERS WE CALL TARGET 263 00:11:58,255 --> 00:11:59,856 ENGAGEMENT TO KNOW THE DRUG IS 264 00:11:59,856 --> 00:12:03,560 DOING WHAT YOU WANT IT TO DO. 265 00:12:03,560 --> 00:12:05,162 AND THAT IS REALLY CRUCIAL 266 00:12:05,162 --> 00:12:06,763 PARTICULARLY NOW BECAUSE WE HAVE 267 00:12:06,763 --> 00:12:08,665 SO MANY DIFFERENT TARGETS THAT 268 00:12:08,665 --> 00:12:10,634 HAVE BEEN IDENTIFIED IN THE 269 00:12:10,634 --> 00:12:12,235 BASIC SCIENCE. 270 00:12:12,235 --> 00:12:13,837 THE BOTTLENECK IS OFTEN 271 00:12:13,837 --> 00:12:14,705 IDENTIFYING WHICH ONES ARE 272 00:12:14,705 --> 00:12:15,939 ROBUST ENOUGH THEY CAN REALLY 273 00:12:15,939 --> 00:12:17,407 MAKE A DIFFERENCE IN PEOPLE AND 274 00:12:17,407 --> 00:12:20,243 THIS IS WHERE WE NEED THE 275 00:12:20,243 --> 00:12:22,145 BIOMARKERS TO MAKE THOSE EARLY 276 00:12:22,145 --> 00:12:25,482 TYPE OF DECISIONS GO, NO-GO 277 00:12:25,482 --> 00:12:26,316 DECISIONS BEFORE ENTERING THE 278 00:12:26,316 --> 00:12:27,250 LONG CLINICAL TRIALS. 279 00:12:27,250 --> 00:12:31,154 BUT THE CLINICAL TRIALS ARE 280 00:12:31,154 --> 00:12:34,992 CLEARLY THE END GAME HERE IS TO 281 00:12:34,992 --> 00:12:37,327 SHOW IN A RIGOROUS WAY WHETHER A 282 00:12:37,327 --> 00:12:38,862 TREATMENT IS WORKING OR NOT AND 283 00:12:38,862 --> 00:12:40,497 WHAT IS THE AFFECT SIZE OF THAT 284 00:12:40,497 --> 00:12:43,133 TREATMENT, WHAT ARE THE RISKS 285 00:12:43,133 --> 00:12:46,203 AND BENEFITS AND THEREFORE TO 286 00:12:46,203 --> 00:12:48,538 INFORM THE PUBLIC ON HOW THEY 287 00:12:48,538 --> 00:12:50,507 SHOULD MOVE FORWARD WITH 288 00:12:50,507 --> 00:12:58,882 THEIRSELVES -- THEMSELVES OR 289 00:12:58,882 --> 00:12:59,583 LOVED ONES. 290 00:12:59,583 --> 00:13:01,885 THE RESEARCH SYNERGIZES WITH 291 00:13:01,885 --> 00:13:04,254 OTHER NEUROLOGICAL DISORDERS. 292 00:13:04,254 --> 00:13:11,228 WE MENTIONED VASCULAR COGNITIVE 293 00:13:11,228 --> 00:13:14,131 IMPAIRMENT AS A KEY FEATURE OF 294 00:13:14,131 --> 00:13:16,700 THE ADRDs AND THERE'S INFORMED 295 00:13:16,700 --> 00:13:18,568 BY WORK ON STROKE AND 296 00:13:18,568 --> 00:13:20,070 CARDIOVASCULAR DISEASE IN THE 297 00:13:20,070 --> 00:13:22,239 LAST 50 YEARS. 298 00:13:22,239 --> 00:13:24,107 SIMILARLY YOU'LL HEAR ABOUT 299 00:13:24,107 --> 00:13:26,043 INFLAMMATION INVOLVED IN THE 300 00:13:26,043 --> 00:13:28,111 DAMAGE THAT OCCURS IN THE 301 00:13:28,111 --> 00:13:30,013 NEUROGENERATIVE DISEASES AND SO 302 00:13:30,013 --> 00:13:32,549 RESEARCH OVER THE LAST 50 YEARS 303 00:13:32,549 --> 00:13:34,284 WE LEARNED A LOT AND IN NO 304 00:13:34,284 --> 00:13:35,318 INSTANCE HAVE WE LEARNED 305 00:13:35,318 --> 00:13:38,021 EVERYTHING BUT WE LEARNED A LOT 306 00:13:38,021 --> 00:13:41,291 ABOUT THE INFLAMMATORY RESPONSES 307 00:13:41,291 --> 00:13:43,493 IN THE BRAIN AND THESE ARE ALL 308 00:13:43,493 --> 00:13:44,795 CRITICALLY IMPORTANT NOW AS 309 00:13:44,795 --> 00:13:46,263 FOUNDATIONS TO UNDERSTAND HOW TO 310 00:13:46,263 --> 00:13:48,832 DEVELOP TREATMENTS FOR THESE 311 00:13:48,832 --> 00:13:51,835 DISORDERS. 312 00:13:51,835 --> 00:13:53,637 SO, THE SLIDE JUST BASICALLY 313 00:13:53,637 --> 00:13:57,374 INDICATES HOW COMPLICATED THE 314 00:13:57,374 --> 00:13:59,376 SITUATION IS. 315 00:13:59,376 --> 00:14:01,578 PARTICULARLY WHEN YOU ARE 316 00:14:01,578 --> 00:14:04,247 DEALING WITH MULTI-ETIOLOGY DIM 317 00:14:04,247 --> 00:14:12,456 EN -- DEMENTIAS YOU HAVE THE 318 00:14:12,456 --> 00:14:19,396 SIGNATURE OF NEURO DEGENERATIVE 319 00:14:19,396 --> 00:14:22,065 DISEASES AND TAU IS A PROTEIN 320 00:14:22,065 --> 00:14:24,568 THAT AGGREGATES INSIDE THE CELLS 321 00:14:24,568 --> 00:14:26,470 AND COMES LATER AND SEEMS TO BE 322 00:14:26,470 --> 00:14:27,871 ASSOCIATED WITH DEATH OF THE 323 00:14:27,871 --> 00:14:29,940 CELLS OPPOSED TO AMYLOID ITSELF. 324 00:14:29,940 --> 00:14:34,244 TAU IS ALSO A PROTEIN THAT ONE 325 00:14:34,244 --> 00:14:44,755 SEES IN THE FRONTAL DEMENTIAS 326 00:14:58,435 --> 00:15:04,274 AND PEOPLE ARE DIAGNOSED WITH 327 00:15:04,274 --> 00:15:05,142 ALZHEIMER'S DISEASE AND SIMILAR 328 00:15:05,142 --> 00:15:08,645 WE'LL SEE IN MANY PEOPLE WHO 329 00:15:08,645 --> 00:15:13,350 HAVE DEMENTIA DIAGNOSES DISEASE 330 00:15:13,350 --> 00:15:21,825 HAS EVIDENCE OF SYNUCLEIN 331 00:15:21,825 --> 00:15:22,759 AGGREGATION AND THIS HAPPENS 332 00:15:22,759 --> 00:15:25,962 OVER TIME AND WHY SOME PEOPLE 333 00:15:25,962 --> 00:15:28,064 ARE RESILIENT AND HAVE THE 334 00:15:28,064 --> 00:15:29,900 PATHOLOGIES BUT COGNITIVELY 335 00:15:29,900 --> 00:15:30,967 NORMAL ARE INTERESTING QUESTION 336 00:15:30,967 --> 00:15:31,902 TO PURSUE. 337 00:15:31,902 --> 00:15:34,771 ARE THERE THINGS IN PHYSICAL 338 00:15:34,771 --> 00:15:36,540 ACTIVITY, DIET OR ALCOHOL OR 339 00:15:36,540 --> 00:15:39,810 DRUG USE OR ENVIRONMENTAL 340 00:15:39,810 --> 00:15:44,214 FACTORS, PSYCHOSOCIAL FACTORS, 341 00:15:44,214 --> 00:15:46,516 METABOLIC FACTORS THAT GO ON TO 342 00:15:46,516 --> 00:15:48,652 INFLUENCE THE PROGRESSION OF 343 00:15:48,652 --> 00:15:49,619 THESE DISEASES ARE AREAS OF 344 00:15:49,619 --> 00:15:54,891 GREAT INTEREST AT THIS TIME. 345 00:15:54,891 --> 00:15:59,329 HERE IS JUST A SLIDE TO SHOW IN 346 00:15:59,329 --> 00:16:04,267 THE STUDY A RELIGIOUS ORDER 347 00:16:04,267 --> 00:16:06,236 STUDY OUT OF CHICAGO. 348 00:16:06,236 --> 00:16:08,638 ONE CAN SEE AND IF YOU LOOK AT 349 00:16:08,638 --> 00:16:14,110 PEOPLE WHO ARE ELDERLY, FEW OF 350 00:16:14,110 --> 00:16:18,181 THEM HAVE ALZHEIMER'S ALONE. 351 00:16:18,181 --> 00:16:20,951 AD VASCULAR IS COMMON AND FOR 352 00:16:20,951 --> 00:16:24,020 OTHER DEMENTIAS ALSO VERY 353 00:16:24,020 --> 00:16:24,654 COMMON. 354 00:16:24,654 --> 00:16:26,656 FOR THE MAJORITY OF FOLKS WILL 355 00:16:26,656 --> 00:16:31,027 HAVE A MIX OF PATHOLOGIES IN THE 356 00:16:31,027 --> 00:16:31,828 ELDERLY STATE. 357 00:16:31,828 --> 00:16:33,463 SOME FOLKS DEVELOP DEMENTIA 358 00:16:33,463 --> 00:16:35,165 EARLIER ON AND THEY'RE LIKELY TO 359 00:16:35,165 --> 00:16:39,903 HAVE A PURER FORM OF ONE OF 360 00:16:39,903 --> 00:16:42,339 THESE TYPES OF DEMENTIAS BUT THE 361 00:16:42,339 --> 00:16:44,074 PUBLIC HEALTH ISSUE IS IN OUR 362 00:16:44,074 --> 00:16:44,875 AGING POPULATION AND THERE WE 363 00:16:44,875 --> 00:16:48,845 HAVE TO LEARN HOW TO BEST 364 00:16:48,845 --> 00:16:53,450 APPROACH THE ISSUE OF 365 00:16:53,450 --> 00:16:55,285 MULTIETIOLOGY DEMENTIAS. 366 00:16:55,285 --> 00:16:56,720 I MENTIONED BIOMARKERS AND THIS 367 00:16:56,720 --> 00:17:07,264 IS AN EXAMPLE OF THE SYNUCLEIN 368 00:17:12,402 --> 00:17:15,872 BIOPSIES AND YOU CAN SEE IN THE 369 00:17:15,872 --> 00:17:18,975 SPINAL FLUID AND THEY BECOME 370 00:17:18,975 --> 00:17:22,345 ABNORMAL POTENTIALLY 10 YEARS 371 00:17:22,345 --> 00:17:23,280 BEFORE ANYONE SHOWS SIGNS OF 372 00:17:23,280 --> 00:17:29,686 THEIR NEUROLOGICAL TROUBLES. 373 00:17:29,686 --> 00:17:31,087 ON ONE HAND IT'S VERY 374 00:17:31,087 --> 00:17:33,123 ENCOURAGING WE HAVE TREATMENTS 375 00:17:33,123 --> 00:17:35,025 WE CAN IDENTIFY PEOPLE EVEN 376 00:17:35,025 --> 00:17:36,660 BEFORE THEY GET SYMPTOMS AND IF 377 00:17:36,660 --> 00:17:39,763 WE CAN INTERVENE EFFECTIVELY 378 00:17:39,763 --> 00:17:41,598 THERE, THEN WE'RE BASICALLY CURE 379 00:17:41,598 --> 00:17:42,232 THE DISEASE. 380 00:17:42,232 --> 00:17:47,938 SO THAT'S KIND OF THE HOLY GRAIL 381 00:17:47,938 --> 00:17:52,275 WE'RE HOPING THESE BIOMARKERS 382 00:17:52,275 --> 00:17:54,811 WHEN LINKED WITH EFFECTIVE 383 00:17:54,811 --> 00:17:55,879 TREATMENT. 384 00:17:55,879 --> 00:17:59,316 THIS IS AN EXAMPLE OF A PHOSPHO 385 00:17:59,316 --> 00:18:00,617 TAU BIOMARKER THAT AGGREGATES 386 00:18:00,617 --> 00:18:03,053 INSIDE THE CELLS AND GENERALLY 387 00:18:03,053 --> 00:18:05,388 THEN KILLS THE CELLS. 388 00:18:05,388 --> 00:18:08,625 THESE ARE BLOOD TESTS THE 389 00:18:08,625 --> 00:18:12,362 SYNUCLEIN TEST OF SKIN OR SPINAL 390 00:18:12,362 --> 00:18:15,031 FLUID AND THESE ARE BLOOD TESTS 391 00:18:15,031 --> 00:18:19,235 THAT CAN LOOK AT PHOSPHORO TAU 392 00:18:19,235 --> 00:18:20,637 IN FOLKS AND YOU CAN SEE IF YOU 393 00:18:20,637 --> 00:18:22,806 HAVE A LOW LEVEL, THEN YOU'RE 394 00:18:22,806 --> 00:18:23,907 LIKELY TO HAVE NORMAL COGNITION 395 00:18:23,907 --> 00:18:28,645 OVER TIME AND IF YOU HAVE A HIGH 396 00:18:28,645 --> 00:18:32,115 LEVEL, THEN YOU'RE AT RISK FOR 397 00:18:32,115 --> 00:18:32,682 DECLINING OVER TIME. 398 00:18:32,682 --> 00:18:35,685 SO THIS IS STARTING WITH PEOPLE 399 00:18:35,685 --> 00:18:39,055 WHO ARE COGNITIVELY NORMAL AND 400 00:18:39,055 --> 00:18:44,627 SHOWING THIS IS A MARKER OF 401 00:18:44,627 --> 00:18:46,796 DECLINE TOWARDS DEMENTIA. 402 00:18:46,796 --> 00:18:48,631 THERE ARE NEW BIOMARKERS THAT 403 00:18:48,631 --> 00:18:51,835 HAVE RECENTLY BEEN DISCOVERED 404 00:18:51,835 --> 00:18:53,436 AND YET TO BE VALIDATED AND HAVE 405 00:18:53,436 --> 00:18:55,138 GONE TO A COMMERCIAL PROCESS AS 406 00:18:55,138 --> 00:18:57,040 SOME OF THE ABETA AND TAU 407 00:18:57,040 --> 00:18:59,175 BIOMARKERS HAVE ALREADY DONE. 408 00:18:59,175 --> 00:19:03,380 THIS IS A STUDY SHOWING THAT 409 00:19:03,380 --> 00:19:08,184 THERE ARE TWO PROTEINS. 410 00:19:08,184 --> 00:19:13,690 THEY HAVE FUNNY NAMES, YWHHA IS 411 00:19:13,690 --> 00:19:17,394 ONE AND THE OTHER IS MPTX2. 412 00:19:17,394 --> 00:19:20,630 THE OTHER TENDS TO GO UP WITH 413 00:19:20,630 --> 00:19:24,634 DEMENTIA AND THE SECOND GOES 414 00:19:24,634 --> 00:19:25,101 DOWN. 415 00:19:25,101 --> 00:19:28,405 SO THE RATIO OF WHAT THEY'RE 416 00:19:28,405 --> 00:19:29,773 MEASURING NOW IS SHOWING -- WE 417 00:19:29,773 --> 00:19:32,642 COMPARE IT TO AMYLOID AND TAU BY 418 00:19:32,642 --> 00:19:36,179 ITSELF AND THIS IS MUCH MORE OF 419 00:19:36,179 --> 00:19:37,914 A ROBUST MARKER. 420 00:19:37,914 --> 00:19:41,918 BUT IT IS A SPINAL FLUID TEST. 421 00:19:41,918 --> 00:19:44,621 JUST AN EXAMPLE OF HOW THESE 422 00:19:44,621 --> 00:19:46,923 FIELDS ARE PROGRESSING AND 423 00:19:46,923 --> 00:19:50,226 VALUABLE BIOMARKERS, BLOOD AND 424 00:19:50,226 --> 00:19:52,529 SPINAL FLUID AND ACTUALLY I 425 00:19:52,529 --> 00:19:56,399 SHOULD MENTION THE RATIO IS ALSO 426 00:19:56,399 --> 00:19:58,902 ABNORMAL IN THE BLOOD AS WELL. 427 00:19:58,902 --> 00:20:03,973 BUT TIME AND STUDIES IN THOUSAND 428 00:20:03,973 --> 00:20:06,142 OF PEOPLE NOW VALIDATING THE 429 00:20:06,142 --> 00:20:09,012 BIOMARKERS WHICH WILL BE HIGHLY 430 00:20:09,012 --> 00:20:09,312 PREDICTIVE. 431 00:20:09,312 --> 00:20:15,351 THE AREA OF COGNITIVE IMPAIRMENT 432 00:20:15,351 --> 00:20:17,687 DUE TO DUE TO VASCULAR DISEASE. 433 00:20:17,687 --> 00:20:18,588 THERE'S VASCULAR CHANGES THAT 434 00:20:18,588 --> 00:20:22,525 OCCUR DUE TO DEMENTIA DUE TO THE 435 00:20:22,525 --> 00:20:25,195 BREAD AND BUTTER TYPE OF SEVERAL 436 00:20:25,195 --> 00:20:25,929 VASCULAR DISEASE. 437 00:20:25,929 --> 00:20:27,997 WE SEE THE HYPERTENSION IN AGING 438 00:20:27,997 --> 00:20:30,366 AND ALZHEIMER'S ITSELF IS 439 00:20:30,366 --> 00:20:32,602 ASSOCIATED WITH CHANGES AND HOW 440 00:20:32,602 --> 00:20:33,903 BLOOD FLOWS FROM THE BRAIN AND 441 00:20:33,903 --> 00:20:39,209 HOW OXYGEN IS SUPPLIED. 442 00:20:39,209 --> 00:20:40,543 ONE OF THE MAJOR PROGRAMS FROM 443 00:20:40,543 --> 00:20:44,581 THE ADRD IS LOOKING AT THE 444 00:20:44,581 --> 00:20:47,550 CHANGES IN THE BLOOD VESSELS IN 445 00:20:47,550 --> 00:20:49,986 PEOPLE WHO HAVE THIS WHAT WE 446 00:20:49,986 --> 00:20:51,121 CALL SMALL VESSEL DISEASE OR 447 00:20:51,121 --> 00:20:53,022 WHITE MATTER DISEASE I MENTIONED 448 00:20:53,022 --> 00:20:53,323 EARLIER. 449 00:20:53,323 --> 00:20:55,592 AND WE CAN SEE HERE WE'RE 450 00:20:55,592 --> 00:21:01,598 WORKING TO DEVELOP A MARKER THAT 451 00:21:01,598 --> 00:21:04,834 WE CAN MEASURE AND CORRELATE 452 00:21:04,834 --> 00:21:09,772 WITH THIS AMOUNT OF MRI 453 00:21:09,772 --> 00:21:16,546 ABNORMALITY WE SEE AS WELL AS 454 00:21:16,546 --> 00:21:19,315 THE COGNITIVE IMPAIRED AND THIS 455 00:21:19,315 --> 00:21:21,551 SHOWS HOW BLOOD FLOW CHANGES 456 00:21:21,551 --> 00:21:24,154 WHEN THE BRAIN IS ACTIVATED OR 457 00:21:24,154 --> 00:21:27,657 THE BLOOD VESSELS ARE STRESSED 458 00:21:27,657 --> 00:21:30,627 TO DILATE IS ABNORMAL IN FOLKS 459 00:21:30,627 --> 00:21:34,264 AS THEY DEVELOP COGNITIVE 460 00:21:34,264 --> 00:21:36,633 IMPAIRMENT AND THIS IS SHOWING 461 00:21:36,633 --> 00:21:39,068 THE GRAPHS IN MULTIPLE DIFFERENT 462 00:21:39,068 --> 00:21:40,637 INSTITUTIONS INDICATING IT'S A 463 00:21:40,637 --> 00:21:42,972 FAIRLY ROBUST FINDING THAT CAN 464 00:21:42,972 --> 00:21:44,641 BE REPRODUCED AT MULTIPLE 465 00:21:44,641 --> 00:21:47,110 DIFFERENT PLACES. 466 00:21:47,110 --> 00:21:48,878 THESE ARE THE KINDS OF THINGS WE 467 00:21:48,878 --> 00:21:52,549 DEVELOP TREATMENTS TO TRY TO 468 00:21:52,549 --> 00:21:53,917 IMPROVE. 469 00:21:53,917 --> 00:21:58,521 KTB43 IS ANOTHER PROTEIN THAT 470 00:21:58,521 --> 00:22:01,758 AGGREGATES IN SIDE THE NEURONS 471 00:22:01,758 --> 00:22:03,860 IN FOLKS WITH ALZHEIMER'S 472 00:22:03,860 --> 00:22:04,093 DISEASE. 473 00:22:04,093 --> 00:22:07,964 AS WELL AS THE FRONTAL DEMENTIAS 474 00:22:07,964 --> 00:22:09,132 AND ALS. 475 00:22:09,132 --> 00:22:13,269 OF NOTE, THIS PROTEIN IS 476 00:22:13,269 --> 00:22:16,439 INVOLVED IN THE SPLICING OF 477 00:22:16,439 --> 00:22:17,674 MESSENGER RNA. 478 00:22:17,674 --> 00:22:18,875 MESSENGER RNA IS MADE FROM THE 479 00:22:18,875 --> 00:22:23,746 DNA AND PROTEINS ARE MADE OFF OF 480 00:22:23,746 --> 00:22:24,714 THE INSTRUCTIONS IN THE 481 00:22:24,714 --> 00:22:26,716 MESSENGER RNA AND MESSENGER RNA 482 00:22:26,716 --> 00:22:30,420 IS BROKEN UP INTO PIECES TO 483 00:22:30,420 --> 00:22:34,257 CAUSE THE RIGHT AMOUNT OF AMINO 484 00:22:34,257 --> 00:22:40,530 ACIDS IN YOUR PROTEINS. 485 00:22:40,530 --> 00:22:43,199 TDP-43 IS INVOLVED IN THE 486 00:22:43,199 --> 00:22:44,500 SPLICING FUNCTION AND WHEN IT 487 00:22:44,500 --> 00:22:46,202 AGGREGATES, IT CAN'T DO THAT. 488 00:22:46,202 --> 00:22:50,240 SO ONE SEES PROTEINS THAT HAVE 489 00:22:50,240 --> 00:22:52,508 THICK -- HAVE PIECES IN IT THAT 490 00:22:52,508 --> 00:22:54,310 SHOULD BE SPLICED OUT BUT 491 00:22:54,310 --> 00:22:56,446 THEY'RE NOT BECAUSE OF THE 492 00:22:56,446 --> 00:22:58,548 TPD-43 DYSFUNCTION AND THESE ARE 493 00:22:58,548 --> 00:23:00,316 CALLED CRYPTIC PROTEINS AND 494 00:23:00,316 --> 00:23:01,684 THESE ARE POTENTIALLY GOING TO 495 00:23:01,684 --> 00:23:04,854 BE VERY GOOD MARKERS OF TDP-43 496 00:23:04,854 --> 00:23:06,956 IMMIGRATION IN THE BRAIN OF 497 00:23:06,956 --> 00:23:08,992 PEOPLE WITH FRONTAL TEMPORAL 498 00:23:08,992 --> 00:23:16,532 DEMENTIA AND PARKINSON'S AND 499 00:23:16,532 --> 00:23:18,635 ALZHEIMER'S AND ALS. 500 00:23:18,635 --> 00:23:20,370 AND THERE'S INTERESTING 501 00:23:20,370 --> 00:23:23,406 TECHNOLOGIES ON THE RIGHT OF THE 502 00:23:23,406 --> 00:23:24,707 SLIDE PEOPLE ARE USING 503 00:23:24,707 --> 00:23:26,542 SOPHISTICATED GENOMIC TECHNIQUES 504 00:23:26,542 --> 00:23:30,213 TO BASICALLY GET RID OF THE PATH 505 00:23:30,213 --> 00:23:31,314 LOGIC ABNORMALITIES. 506 00:23:31,314 --> 00:23:36,653 SO IN THIS CASE THERE'S A GROUP 507 00:23:36,653 --> 00:23:39,055 WORKING WITH A PARTICULAR 508 00:23:39,055 --> 00:23:41,491 ARTIFICIAL GENE THAT CAN GET IN 509 00:23:41,491 --> 00:23:42,592 THE NEURONS BUT IT'S ONLY GOING 510 00:23:42,592 --> 00:23:44,961 TO BE ACTIVE IN THE NEURONS THAT 511 00:23:44,961 --> 00:23:49,265 HAVE TDP-43 WHERE THEY GO SPLICE 512 00:23:49,265 --> 00:23:55,805 OUT A CRYPTIC PEPTIDE AND IN 513 00:23:55,805 --> 00:23:58,474 THOSE NEURONS THE PEPTIDE 514 00:23:58,474 --> 00:24:01,244 ARTIFICIAL GENE WILL BE ACTIVE 515 00:24:01,244 --> 00:24:07,050 AND NORMALIZE THE CRYPTIC 516 00:24:07,050 --> 00:24:08,251 SPLICING OF THE ABNORMALITY AND 517 00:24:08,251 --> 00:24:10,320 PEOPLE CAN USE GENOMIC 518 00:24:10,320 --> 00:24:11,921 TECHNIQUES IN THE LABORATORY AND 519 00:24:11,921 --> 00:24:13,323 ANIMAL MODELS THAT HOPEFULLY CAN 520 00:24:13,323 --> 00:24:14,791 MOVE INTO PEOPLE. 521 00:24:14,791 --> 00:24:17,226 THE POWER OF THESE IS COMPARED 522 00:24:17,226 --> 00:24:18,695 TO DRUGS THEY'RE ONLY ACTIVE 523 00:24:18,695 --> 00:24:19,595 EXACTLY WHERE YOU WANT THEM TO 524 00:24:19,595 --> 00:24:21,064 BE ACTIVE. 525 00:24:21,064 --> 00:24:24,334 SO LIKELY WE CAN GET BIG EFFECT 526 00:24:24,334 --> 00:24:24,867 SIZES WITH VERY FEW SIDE 527 00:24:24,867 --> 00:24:27,170 EFFECTS. 528 00:24:27,170 --> 00:24:35,478 AND THAT'S CERTAINLY THE TRICK. 529 00:24:35,478 --> 00:24:36,746 IN TERMS OF THE GENETIC TRICKS 530 00:24:36,746 --> 00:24:40,249 THE OTHER ONE IS GENE EDITING. 531 00:24:40,249 --> 00:24:43,619 IN WHICH AN ABNORMAL PROTEIN CAN 532 00:24:43,619 --> 00:24:51,260 BE ACTUALLY NORMALIZED BY 533 00:24:51,260 --> 00:24:52,528 BASICALLY GOING IN AND CUTTING 534 00:24:52,528 --> 00:24:57,433 OUT THE ABNORMAL PIECE IN AN 535 00:24:57,433 --> 00:25:00,636 ALZHEIMER'S MODEL IN CUT OUT THE 536 00:25:00,636 --> 00:25:02,939 AMYLOID PRECURSOR PROTEIN THAT 537 00:25:02,939 --> 00:25:04,407 PREVENTS IT FROM BECOMING 538 00:25:04,407 --> 00:25:04,707 PATHOLOGIC. 539 00:25:04,707 --> 00:25:07,510 WE'LL SEE MORE OF THESE. 540 00:25:07,510 --> 00:25:09,746 THIS IS VERY EARLY IN 541 00:25:09,746 --> 00:25:12,648 DEVELOPMENT STAGE IN TERMS OF 542 00:25:12,648 --> 00:25:14,350 GENE EDITING. 543 00:25:14,350 --> 00:25:15,385 THERE'S A COMMON FUND PROGRAM 544 00:25:15,385 --> 00:25:18,154 WE'RE INVOLVED WITH WHICH IS 545 00:25:18,154 --> 00:25:19,622 BASICALLY WORKING TO GET GENE 546 00:25:19,622 --> 00:25:21,157 EDITING TO THE PEOPLE IN 547 00:25:21,157 --> 00:25:22,191 DIFFERENT CONDITIONS. 548 00:25:22,191 --> 00:25:24,660 AGAIN, A REALLY EXCITING WAY OF 549 00:25:24,660 --> 00:25:29,732 GETTING VERY PRECISE TREATMENTS 550 00:25:29,732 --> 00:25:32,635 TO RECTIFY GENETIC ABNORMALITIES 551 00:25:32,635 --> 00:25:34,570 FOR HEALTH. 552 00:25:34,570 --> 00:25:36,606 I MENTIONED EARLIER THERE ARE 553 00:25:36,606 --> 00:25:42,111 SOME REAL INTERESTING CLUES WHEN 554 00:25:42,111 --> 00:25:43,546 WE LOOK AT PEOPLE TO BE VERY 555 00:25:43,546 --> 00:25:47,250 LATE AGE AND DO NOT HAVE 556 00:25:47,250 --> 00:25:52,555 COGNITIVE IMPAIRMENT AND THESE 557 00:25:52,555 --> 00:25:57,293 ARE EXAMPLES THAT ARE REALLY 558 00:25:57,293 --> 00:26:00,396 APPRECIATION IN THE SENSE THAT 559 00:26:00,396 --> 00:26:02,265 WHEN YOU FIND OUT WHAT IT IS 560 00:26:02,265 --> 00:26:04,133 THAT'S PROTECTING THEM, IF YOU 561 00:26:04,133 --> 00:26:06,469 CAN THEN DEVELOP A DRUG OR 562 00:26:06,469 --> 00:26:12,408 GENOMIC THERAPY TO MIMIC THAT 563 00:26:12,408 --> 00:26:15,144 PROTECTION, YOU CAN THEN PROTECT 564 00:26:15,144 --> 00:26:18,915 PEOPLE WHO HAVE ALL DIFFERENT 565 00:26:18,915 --> 00:26:20,650 FORMS OF THE DISEASE. 566 00:26:20,650 --> 00:26:23,386 SO, BY STUDYING THE FOUR 567 00:26:23,386 --> 00:26:25,254 POPULATIONS, YOU CAN FIND 568 00:26:25,254 --> 00:26:26,422 TREATMENTS THAT CAN BE 569 00:26:26,422 --> 00:26:28,624 GENERALIZED TO BIG POPULATIONS. 570 00:26:28,624 --> 00:26:33,329 THE TWO MENTIONED HERE ARE 571 00:26:33,329 --> 00:26:36,065 REELIN A CERTAIN ISOFORM OF 572 00:26:36,065 --> 00:26:38,801 REELIN FIND PEOPLE WHO HAVE A 573 00:26:38,801 --> 00:26:40,636 GENETIC MUTATION THAT SHOULD 574 00:26:40,636 --> 00:26:41,504 GIVE THEM ALZHEIMER'S BUT 575 00:26:41,504 --> 00:26:44,040 THEY'RE COGNITIVELY NORMAL. 576 00:26:44,040 --> 00:26:47,910 SOMEHOW THE REELIN ISOFORM IS 577 00:26:47,910 --> 00:26:51,547 PROTECTING THEM AND THE APOE 3 578 00:26:51,547 --> 00:26:54,917 IS DOING SOMETHING SIMILAR. 579 00:26:54,917 --> 00:27:05,428 THE IDEA TO FIND OUT WHAT THE 580 00:27:05,928 --> 00:27:09,031 APOE 3 IS DOING AND FIND PEOPLE 581 00:27:09,031 --> 00:27:09,932 AT RISK FOR ALZHEIMER'S DISEASE 582 00:27:09,932 --> 00:27:13,803 AND SIMILARLY WITH THE REELIN 583 00:27:13,803 --> 00:27:14,036 ISOFORM. 584 00:27:14,036 --> 00:27:16,439 THESE ARE CLOSE TO BEING 585 00:27:16,439 --> 00:27:22,478 FOLLOWED UP FOR NEW TREATMENTS. 586 00:27:22,478 --> 00:27:24,647 THE OTHER THING TO MENTION, I 587 00:27:24,647 --> 00:27:28,618 BRIEFLY HIT ON THIS EARLIER IS 588 00:27:28,618 --> 00:27:34,357 THAT IN ALL THE 589 00:27:34,357 --> 00:27:36,058 NEURODEGENERATIONS THERE'S AN 590 00:27:36,058 --> 00:27:36,592 INFLAMMATORY REACTION. 591 00:27:36,592 --> 00:27:38,628 WE THINK OF INFLAMMATION WITH 592 00:27:38,628 --> 00:27:41,364 INFECTION, SAY, FOR INSTANCE, 593 00:27:41,364 --> 00:27:43,266 WHERE THE INFLAMMATION COMES AND 594 00:27:43,266 --> 00:27:46,636 IT CONTROLS THE BACTERIA OR THE 595 00:27:46,636 --> 00:27:49,372 VIRUS THAT'S CAUSING YOUR 596 00:27:49,372 --> 00:27:50,106 INFECTION. 597 00:27:50,106 --> 00:27:52,375 BUT IT TURNS OUT IN THE NERVOUS 598 00:27:52,375 --> 00:27:53,843 SYSTEM, THE IMMUNE SYSTEM IS 599 00:27:53,843 --> 00:27:56,646 ACTIVE ALL THE TIME IN RESHAPING 600 00:27:56,646 --> 00:27:58,781 THE SYNAPSES BETWEEN THE CELLS 601 00:27:58,781 --> 00:28:02,585 AND IN PROTECTING THE BRAIN 602 00:28:02,585 --> 00:28:03,586 AGAINST BACTERIA AND VIRUSES. 603 00:28:03,586 --> 00:28:08,257 BUT IN SOME INSTANCES IN 604 00:28:08,257 --> 00:28:09,392 NEURODEGENERATION IT APPEARS THE 605 00:28:09,392 --> 00:28:10,660 IMMUNE SYSTEM BECOMES OVER 606 00:28:10,660 --> 00:28:12,461 ACTIVE AND MAY CONTRIBUTE TO THE 607 00:28:12,461 --> 00:28:12,695 DAMAGE. 608 00:28:12,695 --> 00:28:14,530 SO SO THERE'S A NUMBER OF 609 00:28:14,530 --> 00:28:16,299 EXAMPLES. 610 00:28:16,299 --> 00:28:19,569 THIS IS ONE OF THEM WHERE IT'S 611 00:28:19,569 --> 00:28:24,640 BEEN FOUND THAT KEY CELLS WHICH 612 00:28:24,640 --> 00:28:26,108 ARE INFLAMMATORY CELLS CAN 613 00:28:26,108 --> 00:28:32,648 INVADE THE SURFACE OF THE BRAIN 614 00:28:32,648 --> 00:28:36,652 SUBSTANCE CALLED THE DURA MATTER 615 00:28:36,652 --> 00:28:39,655 AND PRODUCE IL17 WHICH CREATES 616 00:28:39,655 --> 00:28:42,825 MACROPHAGES WHICH IS ANOTHER 617 00:28:42,825 --> 00:28:44,860 MORE AGGRESSIVE INFLAMMATORY 618 00:28:44,860 --> 00:28:47,863 CELL THAT CAN THEN INJURY 619 00:28:47,863 --> 00:28:51,534 ADJACENT CELLS AND GIVE RISE TO 620 00:28:51,534 --> 00:28:55,037 LOSS OF NEURONS AND SYNAPSES. 621 00:28:55,037 --> 00:28:58,207 SO TARGETING THESE TYPES OF 622 00:28:58,207 --> 00:29:01,444 CELLS IS PARTICULAR INFLAMMATORY 623 00:29:01,444 --> 00:29:04,614 CELLS MIGHT BE PROTECTIVE. 624 00:29:04,614 --> 00:29:08,651 AND THIS EXAMPLE AS I MENTIONED 625 00:29:08,651 --> 00:29:12,655 IS ACTUALLY DRIVEN BY THE 626 00:29:12,655 --> 00:29:14,924 VASCULAR ABNORMALITIES ONE SEES 627 00:29:14,924 --> 00:29:15,391 IN VASCULAR COGNITIVE 628 00:29:15,391 --> 00:29:18,060 IMPAIRMENT. 629 00:29:18,060 --> 00:29:20,630 THERE'S ALSO RECENT STUDIES 630 00:29:20,630 --> 00:29:22,632 ABOUT APOE 4 WHICH IS ONE OF THE 631 00:29:22,632 --> 00:29:24,667 HIGHEST RISK FACTORS FOR 632 00:29:24,667 --> 00:29:27,903 ALZHEIMER'S DISEASE AND 633 00:29:27,903 --> 00:29:30,339 PROGRESSION OF ALZHEIMER'S 634 00:29:30,339 --> 00:29:31,474 DISEASE. 635 00:29:31,474 --> 00:29:35,277 AND THIS STUDY SHOWS THAT IN 636 00:29:35,277 --> 00:29:39,015 APOE 4, MICE ONE SEES AN 637 00:29:39,015 --> 00:29:41,217 ABNORMALITY IN CHOLESTEROL 638 00:29:41,217 --> 00:29:43,552 METABOLISM AND CHOLESTEROL 639 00:29:43,552 --> 00:29:48,658 ACCUMULATES INSIDE THE CELLS 640 00:29:48,658 --> 00:29:54,030 THAT RESULTS IN INHIBITION OF 641 00:29:54,030 --> 00:29:56,032 MYELIN BASED PROTEIN WHICH IS 642 00:29:56,032 --> 00:29:57,800 THE PROTEIN NEEDED TO COVER THE 643 00:29:57,800 --> 00:30:00,636 WIRES THAT I MENTIONED EARLIER 644 00:30:00,636 --> 00:30:04,073 THAT CONNECT TO DIFFERENT BRAIN 645 00:30:04,073 --> 00:30:04,306 REGIONS. 646 00:30:04,306 --> 00:30:06,409 THERE'S A CONNECTION BETWEEN THE 647 00:30:06,409 --> 00:30:10,546 APOE 4 GENE WHICH IS A REAL BAD 648 00:30:10,546 --> 00:30:12,648 ACTOR IN ALZHEIMER'S AND 649 00:30:12,648 --> 00:30:13,649 VASCULAR COGNITIVE IMPAIRMENT OR 650 00:30:13,649 --> 00:30:15,584 WHITE MATTER DISEASE. 651 00:30:15,584 --> 00:30:18,454 FINALLY, I WANTED TO MENTION THE 652 00:30:18,454 --> 00:30:21,824 WORK YOU'LL BE HEARING ABOUT AND 653 00:30:21,824 --> 00:30:24,226 I DESCRIBED GOES ON AROUND 654 00:30:24,226 --> 00:30:26,162 UNIVERSITIES ACROSS THE COUNTRY. 655 00:30:26,162 --> 00:30:28,264 WE ARE INDEBTED SO THE PATIENTS 656 00:30:28,264 --> 00:30:31,500 AND THE SUBJECTS AND THE 657 00:30:31,500 --> 00:30:33,202 CAREGIVERS WHO TAKE TIME AND 658 00:30:33,202 --> 00:30:36,238 ENERGY TO PARTICIPATE IN THESE 659 00:30:36,238 --> 00:30:36,639 STUDIES. 660 00:30:36,639 --> 00:30:40,342 AND IT'S ONLY THROUGH THIS 661 00:30:40,342 --> 00:30:41,343 COMMUNITY THAT WE HAVE BUILT 662 00:30:41,343 --> 00:30:43,512 OVER THE YEARS AND CONTINUE TO 663 00:30:43,512 --> 00:30:45,748 NURTURE THAT WE'RE GOING TO MAKE 664 00:30:45,748 --> 00:30:46,816 ADVANCES. 665 00:30:46,816 --> 00:30:48,584 SIMILARLY ACROSS THE COUNTRY WE 666 00:30:48,584 --> 00:30:52,288 ALSO HAVE A PROGRAM HERE ON THE 667 00:30:52,288 --> 00:30:56,192 BETHESDA BUTS THE CENTER FOR 668 00:30:56,192 --> 00:30:57,193 ALZHEIMER RELATED DEMENTIAS 669 00:30:57,193 --> 00:30:59,929 USING SOME REALLY INNOVATIVE 670 00:30:59,929 --> 00:31:03,766 TECHNOLOGIES PARTICULARLY USING 671 00:31:03,766 --> 00:31:09,171 HUMAN CELLS TAKEN FROM PEOPLE 672 00:31:09,171 --> 00:31:13,008 SAY THE SKIN BIOPSY AND 673 00:31:13,008 --> 00:31:14,643 DEVELOPED INTO STUDY THE ROLE OF 674 00:31:14,643 --> 00:31:19,648 FACTORS IN THE PATHOLOGY THAT WE 675 00:31:19,648 --> 00:31:22,818 SEE IN THE CELLS OF PEOPLE WITH 676 00:31:22,818 --> 00:31:26,655 NEUROGET 677 00:31:26,655 --> 00:31:29,525 NEUROGET -- NEURODEGENERATIVE 678 00:31:29,525 --> 00:31:32,094 DISEASES AND AN INTERESTING 679 00:31:32,094 --> 00:31:33,696 STUDY AT THE CAMPUS. 680 00:31:33,696 --> 00:31:38,934 ANOTHER AREA I THINK IS 681 00:31:38,934 --> 00:31:40,369 INCREDIBLY IMPORTANT NOW IS 682 00:31:40,369 --> 00:31:43,539 UNDERSTANDING HOW TO IDENTIFY 683 00:31:43,539 --> 00:31:47,710 PEOPLE EARLY ON AS THEY DEVELOP 684 00:31:47,710 --> 00:31:49,411 NEURODEGENERATION AND THE 685 00:31:49,411 --> 00:31:50,880 EARLIER SIGNS OF COGNITIVE 686 00:31:50,880 --> 00:31:51,180 IMPAIRMENT. 687 00:31:51,180 --> 00:31:53,749 THE GENERAL RULE THAT WE SEE 688 00:31:53,749 --> 00:31:56,051 ASCRIBE TO IS THAT AS THIS 689 00:31:56,051 --> 00:31:59,722 PROCESS GOES ON AND ON IT GETS 690 00:31:59,722 --> 00:32:02,191 VERY HARD TO STOP IT. 691 00:32:02,191 --> 00:32:04,460 THE BEST CHANCE OF MAKING A BIG 692 00:32:04,460 --> 00:32:08,631 DIFFERENCE IS GOING TO BE IN 693 00:32:08,631 --> 00:32:16,472 EARLY INTERVENTIONS. 694 00:32:16,472 --> 00:32:18,007 THE BIOMARKER FIELD HAS 695 00:32:18,007 --> 00:32:20,376 PROGRESSED WHERE SOME WILL BE 696 00:32:20,376 --> 00:32:22,311 TURNING POSITIVE VERY EARLY ON 697 00:32:22,311 --> 00:32:23,145 EVEN BEFORE SYMPTOMS. 698 00:32:23,145 --> 00:32:25,447 SO THAT'S VERY ENCOURAGING. 699 00:32:25,447 --> 00:32:30,186 WE ALSO NEED WAYS IN WHICH WE 700 00:32:30,186 --> 00:32:37,927 CAN IDENTIFY PEOPLE IN 701 00:32:37,927 --> 00:32:38,227 COGNITION. 702 00:32:38,227 --> 00:32:48,470 THIS IS THE STUDY CALLED T THE 703 00:32:48,470 --> 00:32:54,443 TECH PROGRAM TO DEVELOP A METHOD 704 00:32:54,443 --> 00:32:56,846 WHEREBY PRIMARY CARE PHYSICIANS 705 00:32:56,846 --> 00:32:59,215 HAVE THEIR FAMILY DOCTOR AND 706 00:32:59,215 --> 00:33:01,450 THAT WILL BE THE POINT TO WHERE 707 00:33:01,450 --> 00:33:03,352 THE PROBLEMS WILL BE FIRST ABLE 708 00:33:03,352 --> 00:33:04,587 TO BE DETECTED. 709 00:33:04,587 --> 00:33:08,524 AND SO WE NEED METHODS AND THIS 710 00:33:08,524 --> 00:33:10,559 IS ONE OF THEM WHICH WAS QUITE 711 00:33:10,559 --> 00:33:11,694 SUCCESSFUL AT HELPING IN THE 712 00:33:11,694 --> 00:33:15,598 PRIMARY CARE SETTING TO IDENTIFY 713 00:33:15,598 --> 00:33:16,599 PEOPLE WITH COGNITIVE 714 00:33:16,599 --> 00:33:17,733 IMPAIRMENT. 715 00:33:17,733 --> 00:33:20,636 IN THIS CASE IT SHOWED IT LED TO 716 00:33:20,636 --> 00:33:23,272 IMPROVED DEMENTIA CARE. 717 00:33:23,272 --> 00:33:26,008 SO EVEN WOULD THIS IDEA OF 718 00:33:26,008 --> 00:33:27,509 IDENTIFYING PEOPLE FOR THESE NEW 719 00:33:27,509 --> 00:33:31,714 TREATMENTS OF THE FUTURE, THESE 720 00:33:31,714 --> 00:33:33,816 DIAGNOSTIC CRITERIA CAN BE 721 00:33:33,816 --> 00:33:34,416 HELPFUL IN THE IMMEDIATE TIME 722 00:33:34,416 --> 00:33:36,252 FRAME. 723 00:33:36,252 --> 00:33:40,823 SO WHAT WE TRY TO DO IS THINK 724 00:33:40,823 --> 00:33:45,194 ABOUT THE PROBLEMS THAT PEOPLE 725 00:33:45,194 --> 00:33:49,999 ARE SUFFERING WITH 726 00:33:49,999 --> 00:33:50,833 ALZHEIMER-RELATED DEMENTIAS AT 727 00:33:50,833 --> 00:33:53,269 EVERY COMPONENT OF THESE 728 00:33:53,269 --> 00:33:55,504 CONDITIONS, WE TRY TO DEVELOP 729 00:33:55,504 --> 00:33:58,807 RESEARCH THAT CAN ADVANCE THEIR 730 00:33:58,807 --> 00:34:00,976 TREATMENT, PREVENTION AND CARE. 731 00:34:00,976 --> 00:34:02,511 I'M REALLY LOOKING FORWARD TO 732 00:34:02,511 --> 00:34:04,647 HEARING FROM THE RECOMMENDATIONS 733 00:34:04,647 --> 00:34:07,449 OF THE WORKING GROUPS AS THEY 734 00:34:07,449 --> 00:34:09,385 HAVE REALLY TAKEN ON THE 735 00:34:09,385 --> 00:34:12,054 CHALLENGE OF LOOKING AT A VERY 736 00:34:12,054 --> 00:34:14,223 COMPLICATED BUT VERY IMPORTANT 737 00:34:14,223 --> 00:34:16,625 AREA OF SCIENCE. 738 00:34:16,625 --> 00:34:26,969 THANK YOU VERY MUCH. 739 00:34:34,910 --> 00:34:40,349 NOW I'LL HAND IT OVER TO AC BER 740 00:34:40,349 --> 00:34:43,118 MCCARTNEY LEADING THE SUMMIT 741 00:34:43,118 --> 00:34:43,419 FROM NINDS. 742 00:34:43,419 --> 00:34:46,255 >> THANK YOU, WALTER. 743 00:34:46,255 --> 00:34:54,964 -- AMBER MCCARTNEY. 744 00:34:54,964 --> 00:34:59,268 >> AMBER: THIS SUMMARIZES THE 745 00:34:59,268 --> 00:34:59,902 PLAN TO ADDRESS ALZHEIMER'S 746 00:34:59,902 --> 00:35:00,135 DISEASE. 747 00:35:00,135 --> 00:35:02,805 I WANT TO MAKE ONE POINT, THAT'S 748 00:35:02,805 --> 00:35:04,506 PLEASE FOCUS YOUR ATTENTION AT 749 00:35:04,506 --> 00:35:06,008 THE BOTTOM OF THE SLIDE. 750 00:35:06,008 --> 00:35:09,345 HERE YOU CAN SEE UNDER THE FIRST 751 00:35:09,345 --> 00:35:10,646 PROFESSIONAL PLAN THERE'S AN 752 00:35:10,646 --> 00:35:12,548 ACTION ITEM FOR US WHICH DIRECTS 753 00:35:12,548 --> 00:35:16,652 US TO REGULARLY CONVENE A SUMMIT 754 00:35:16,652 --> 00:35:17,619 ON ADRD RESEARCH. 755 00:35:17,619 --> 00:35:20,923 THE SUMMIT THE PURPOSE IS TO 756 00:35:20,923 --> 00:35:23,892 REVIEW PROGRESS ON 757 00:35:23,892 --> 00:35:25,928 RECOMMENDATIONS AS APPROPRIATE 758 00:35:25,928 --> 00:35:26,829 BASED ON RECENT SCIENTIFIC 759 00:35:26,829 --> 00:35:30,799 DISCOVERIES AND THIS IS WHAT 760 00:35:30,799 --> 00:35:32,267 WE'RE HERE TO DO TODAY. 761 00:35:32,267 --> 00:35:34,370 TODAY WE WANT YOUR INPUT ON THE 762 00:35:34,370 --> 00:35:35,371 DRAFT RECOMMENDATIONS PRESENTED 763 00:35:35,371 --> 00:35:37,106 AND I WANT YOU TO KNOW WE TAKE 764 00:35:37,106 --> 00:35:39,441 THIS VERY SERIOUSLY AND 765 00:35:39,441 --> 00:35:41,410 ENCOURAGE YOU TO STAY INVOLVED 766 00:35:41,410 --> 00:35:44,646 THROUGHOUT THE MULTI-DAY EVENT. 767 00:35:44,646 --> 00:35:46,782 IN THE AGENDA YOU'LL SEE TIME 768 00:35:46,782 --> 00:35:48,650 DEDICATED PUBLIC INPUT IN EACH 769 00:35:48,650 --> 00:35:51,653 SESSION AND WHERE WE ENCOURAGE 770 00:35:51,653 --> 00:35:53,055 YOU TO PROVIDE INPUT AND 771 00:35:53,055 --> 00:35:56,859 FEEDBACK ON THE RECOMMENDATIONS. 772 00:35:56,859 --> 00:36:00,629 HERE IS AN AGENDA FOR THE THREE 773 00:36:00,629 --> 00:36:01,964 DAYS AND FOR EACH SESSION YOU'LL 774 00:36:01,964 --> 00:36:04,900 SEE THE NAME OF THE SESSION AND 775 00:36:04,900 --> 00:36:08,637 I'VE INDICATED THE NUMBER OF 776 00:36:08,637 --> 00:36:09,438 RECOMMENDATIONS EACH SESSION 777 00:36:09,438 --> 00:36:10,672 WILL PRESENT. 778 00:36:10,672 --> 00:36:13,375 AS IN PREVIOUS YEARS, 779 00:36:13,375 --> 00:36:15,110 CROSS-CUTTING SECTION SUCH AS 780 00:36:15,110 --> 00:36:19,481 THE DISEASE SPECIFIC SESSION, 781 00:36:19,481 --> 00:36:21,650 EACH HAVE EIGHT RECOMMENDATIONS 782 00:36:21,650 --> 00:36:23,986 AND HAVE PRIORITY LEVELS 1-4. 783 00:36:23,986 --> 00:36:25,754 THEY HAVE TWO NUMBER ONE AND TWO 784 00:36:25,754 --> 00:36:27,856 NUMBER TWO PRIORITIES AND TWO 785 00:36:27,856 --> 00:36:29,291 NUMBER THREE PRIORITIES AND TWO 786 00:36:29,291 --> 00:36:29,625 NUMBER FOUR. 787 00:36:29,625 --> 00:36:31,727 THE SPECIAL TOPIC SESSIONS EACH 788 00:36:31,727 --> 00:36:33,562 HAVE FOUR RECOMMENDATIONS WITH 789 00:36:33,562 --> 00:36:34,863 PRIORITY LEVELS 1-4. 790 00:36:34,863 --> 00:36:40,736 ALL PRIORITIES PRESENTED ARE 791 00:36:40,736 --> 00:36:43,772 HIGHEST PRIORITIES FOR THE 792 00:36:43,772 --> 00:36:43,972 FIELD. 793 00:36:43,972 --> 00:36:46,875 YOU'LL HEAR MORE IN THE FIRST 794 00:36:46,875 --> 00:36:51,046 SESSION LED BY DR. POSSIN. 795 00:36:51,046 --> 00:36:52,548 THEY DECIDED TO SPLIT INTO TWO 796 00:36:52,548 --> 00:36:55,884 SUBCOMMITTEES AND START OFF DAYS 797 00:36:55,884 --> 00:36:58,387 ONE AND TWO. 798 00:36:58,387 --> 00:37:01,490 THE FIRST SESSION WILL START 799 00:37:01,490 --> 00:37:06,562 WITH INFLAMMATION AND THE SECOND 800 00:37:06,562 --> 00:37:09,765 DAY IS RESEARCH. 801 00:37:09,765 --> 00:37:11,867 COMBINED THEY PRESENT THE EIGHT 802 00:37:11,867 --> 00:37:15,604 EXISTING RECOMMENDATIONS FOR THE 803 00:37:15,604 --> 00:37:17,139 ETIOLOGY DEMENTIA SESSION FROM 804 00:37:17,139 --> 00:37:17,339 2022. 805 00:37:17,339 --> 00:37:20,442 I WANT TO POINT OUT IN ADDITION 806 00:37:20,442 --> 00:37:24,646 TO EACH SESSION, ENDING WITH 807 00:37:24,646 --> 00:37:34,256 DEDICATED MICRO PHOTI AND I'LL 808 00:37:34,256 --> 00:37:37,459 TALK ABOUT THE CONTEXT AND 809 00:37:37,459 --> 00:37:40,629 WHAT'S INVOLVED. 810 00:37:40,629 --> 00:37:43,365 SO PLANNING STARTED SIX, SEVEN 811 00:37:43,365 --> 00:37:46,001 MONTHS AGO AND THE COMMITTEES 812 00:37:46,001 --> 00:37:50,339 INVOLVED OVER 120 SCIENTISTS, 813 00:37:50,339 --> 00:37:51,440 PHYSICIANS, PEOPLE WITH LIVED 814 00:37:51,440 --> 00:37:54,376 EXPERIENCE AND ADMINISTRATORS 815 00:37:54,376 --> 00:37:57,212 AND PARTNERS AND I'LL INTRODUCE 816 00:37:57,212 --> 00:37:58,480 DR. POSSIN. 817 00:37:58,480 --> 00:38:01,783 SHE'LL SPEAK AFTER ME AND HOLDS 818 00:38:01,783 --> 00:38:06,488 THE JOHN DOUGLAS FRENCH ENDOWED 819 00:38:06,488 --> 00:38:07,189 PROFESSORSHIP IN THE DEPARTMENT 820 00:38:07,189 --> 00:38:10,058 OF NEUROLOGY AT THE UNIVERSITY 821 00:38:10,058 --> 00:38:12,094 OF CALIFORNIA SAN FRANCISCO AND 822 00:38:12,094 --> 00:38:14,663 PREVIOUSLY SHARED THE MULTIPLE 823 00:38:14,663 --> 00:38:16,665 ETIOLOGY DEMENTIA SESSION FOR 824 00:38:16,665 --> 00:38:18,000 TWO PREVIOUS SESSION AND THE 825 00:38:18,000 --> 00:38:21,403 LEADER IN DETECTION OF ATAXIA 826 00:38:21,403 --> 00:38:22,905 I.D. AND YOU HEARD WALTER TALK 827 00:38:22,905 --> 00:38:24,907 ABOUT THE PROGRAM AND A LEADER 828 00:38:24,907 --> 00:38:27,309 IN NATIONAL AND INTERNATIONAL 829 00:38:27,309 --> 00:38:28,644 EFFORTS TO ADDRESS DEMENTIA IN 830 00:38:28,644 --> 00:38:31,180 EVERYDAY CLINICAL STUDIES WE 831 00:38:31,180 --> 00:38:33,549 HAVE AN ESTEEMED STEERING 832 00:38:33,549 --> 00:38:35,751 COMMITTEE OF CHAIRS AND 833 00:38:35,751 --> 00:38:37,986 PROMINENT LEADERS IN THE FIELD 834 00:38:37,986 --> 00:38:39,021 AND HERE AT THE SESSION AND 835 00:38:39,021 --> 00:38:46,662 MEETING GOALS. 836 00:38:46,662 --> 00:38:48,630 THIS SLIDE SHOWS THE NIH 837 00:38:48,630 --> 00:38:50,132 RESEARCH SPENDING FOR 838 00:38:50,132 --> 00:38:52,935 ALZHEIMER'S DISEASE AND 839 00:38:52,935 --> 00:38:54,269 ALZHEIMER'S DISEASE RELATED 840 00:38:54,269 --> 00:38:55,637 DEMENTIA RESEARCH HAS INCREASED 841 00:38:55,637 --> 00:38:56,405 IN THE PAST DECADE. 842 00:38:56,405 --> 00:38:58,507 THIS IS NOT A BUDGETING SLIDE 843 00:38:58,507 --> 00:38:59,942 BUT ACTUAL DOLLARS SPENT ON THE 844 00:38:59,942 --> 00:39:01,476 CATEGORIES OF RESEARCH AND IF 845 00:39:01,476 --> 00:39:02,911 YOU'RE INTERESTED IN DETAILS FOR 846 00:39:02,911 --> 00:39:05,614 THESE NUMBERS, PLEASE GO TO THE 847 00:39:05,614 --> 00:39:06,949 NIH REPORTER WEBSITE THE ADDRESS 848 00:39:06,949 --> 00:39:08,917 IS FOUND AT THE BOTTOM OF THE 849 00:39:08,917 --> 00:39:12,387 SLIDE. 850 00:39:12,387 --> 00:39:16,625 THE POINT I WANT TO MAKE IS THE 851 00:39:16,625 --> 00:39:20,629 RELATED DEMENTIAS STUDIES HAVE 852 00:39:20,629 --> 00:39:27,703 INCREASED AS WELL. 853 00:39:27,703 --> 00:39:30,205 NINDS LEADS THE ALZHEIMER'S 854 00:39:30,205 --> 00:39:33,208 DISEASE RELATED DEMENTIAS AND 855 00:39:33,208 --> 00:39:35,177 WORK IN CLOSE PARTNERSHIP WITH 856 00:39:35,177 --> 00:39:36,912 THE NATIONAL INSTITUTE ON AGES 857 00:39:36,912 --> 00:39:39,615 AND THROUGH THE CONGRESSIONAL 858 00:39:39,615 --> 00:39:40,916 PARTNERSHIP FUNDS ARE AVAILABLE 859 00:39:40,916 --> 00:39:41,817 TO FUND RESEARCH. 860 00:39:41,817 --> 00:39:43,452 WE USE THE ADDED FUNDS FOR 861 00:39:43,452 --> 00:39:45,120 ACTIVITIES THAT RESPOND TO THE 862 00:39:45,120 --> 00:39:46,922 MILESTONES IN THE NATIONAL PLAN. 863 00:39:46,922 --> 00:39:48,790 THE MILESTONES THAT COME FROM 864 00:39:48,790 --> 00:39:50,125 THESE SUMMITS. 865 00:39:50,125 --> 00:39:51,593 IN PARTICULAR ADDED FUNDS ARE 866 00:39:51,593 --> 00:39:54,630 USED FOR INCREASED INVESTIGATOR 867 00:39:54,630 --> 00:39:56,632 INITIATED RESEARCH AND RESEARCH 868 00:39:56,632 --> 00:39:58,400 THAT'S RESPONSIVE TO NINDS, ADRD 869 00:39:58,400 --> 00:40:03,472 FUNDING OPPORTUNITIES. 870 00:40:03,472 --> 00:40:09,144 THIS SLIDE IS A SUMMARY AND I 871 00:40:09,144 --> 00:40:10,879 JUST WANT TO JUMP TO THE NEXT 872 00:40:10,879 --> 00:40:14,616 SLIDE SO WE CAN MOVE FORWARD AND 873 00:40:14,616 --> 00:40:15,317 GET TIME BACK. 874 00:40:15,317 --> 00:40:16,652 BEFORE WE GET INTO SESSIONS I 875 00:40:16,652 --> 00:40:21,890 WANT TO GIVE YOU A QUICK GUIDE 876 00:40:21,890 --> 00:40:24,726 TO THE DRAFT RECOMMENDATIONS. 877 00:40:24,726 --> 00:40:26,628 YOU CAN SEE HERE THE 878 00:40:26,628 --> 00:40:28,063 RECOMMENDATION IS AN EXAMPLE AND 879 00:40:28,063 --> 00:40:31,333 YOU CAN SEE IT HAS A NUMBER AND 880 00:40:31,333 --> 00:40:34,069 PRIORITY AND THE PRIORITY THAT'S 881 00:40:34,069 --> 00:40:36,271 IN THE BOX IS FOLLOWED BY TEXT 882 00:40:36,271 --> 00:40:40,909 AND THAT TEXT IS THE TOP LEVEL 883 00:40:40,909 --> 00:40:41,276 RECOMMENDATION. 884 00:40:41,276 --> 00:40:43,045 SO THE DATE AT THE END IS THE 885 00:40:43,045 --> 00:40:46,882 ESTIMATED YEAR TO COMPLETE OR 886 00:40:46,882 --> 00:40:47,549 FULLY IMPLEMENT THE 887 00:40:47,549 --> 00:40:52,554 RECOMMENDATION IF IT WERE 888 00:40:52,554 --> 00:40:52,921 STARTED IN 2026. 889 00:40:52,921 --> 00:40:55,057 SO THE NEXT SLIDE IS WHEN I HAND 890 00:40:55,057 --> 00:40:57,025 IT OFF TO DR. POSSIN. 891 00:40:57,025 --> 00:40:58,994 THANK YOU VERY MUCH FOR TODAY 892 00:40:58,994 --> 00:41:02,564 AND PLEASE DO PARTICIPATE IN THE 893 00:41:02,564 --> 00:41:05,033 DISCUSSION SESSIONS. 894 00:41:05,033 --> 00:41:06,435 AND I THINK I'LL HAND IT OFF TO 895 00:41:06,435 --> 00:41:09,137 DR. POS SCRIN. 896 00:41:09,137 --> 00:41:12,641 -- DR. POSSIN. 897 00:41:12,641 --> 00:41:12,908 THANK YOU. 898 00:41:12,908 --> 00:41:17,379 >> DR. POSSIN: GOOD MORNING I'M 899 00:41:17,379 --> 00:41:19,681 PLEASED TO KICK OFF THE ADRD 900 00:41:19,681 --> 00:41:19,981 SUMMIT. 901 00:41:19,981 --> 00:41:23,285 >> KATE, ARE YOU GOOD? 902 00:41:23,285 --> 00:41:30,425 >> DR. POSSIN: YES, CAN YOU HEAR 903 00:41:30,425 --> 00:41:31,026 ME OKAY? 904 00:41:31,026 --> 00:41:31,927 ALL RIGHT, GOOD. 905 00:41:31,927 --> 00:41:34,596 I HAVE NO FINANCIAL CONFLICTS TO 906 00:41:34,596 --> 00:41:34,963 REPORT. 907 00:41:34,963 --> 00:41:37,632 AND WE ARE HERE TODAY FOR GOOD 908 00:41:37,632 --> 00:41:37,866 REASON. 909 00:41:37,866 --> 00:41:42,204 A LARGE AND GROWING NUMBER OF 910 00:41:42,204 --> 00:41:42,838 AMERICANS HAVE DEMENTIA. 911 00:41:42,838 --> 00:41:45,674 DEMENTIA AFFECTS MORE THAN 6 912 00:41:45,674 --> 00:41:47,876 MILLION AMERICANS TODAY AND 13 913 00:41:47,876 --> 00:41:50,912 MILLION ARE PROJECTED TO HAVE 914 00:41:50,912 --> 00:41:52,948 DEMENTIA BY 2060. 915 00:41:52,948 --> 00:41:54,282 THE RISK FOR DEVELOPING DEMENTIA 916 00:41:54,282 --> 00:41:55,717 FOR PEOPLE WHO LIVE INTO OLDER 917 00:41:55,717 --> 00:41:58,153 AGE IS HIGH WITH ESTIMATES 918 00:41:58,153 --> 00:42:01,823 RANGING BETWEEN 20% TO 40%. 919 00:42:01,823 --> 00:42:03,658 AS SHOWN HERE IN THE RECENT 920 00:42:03,658 --> 00:42:06,094 STUDY PUBLISHED IN NATURE AND 921 00:42:06,094 --> 00:42:08,296 MEDICINE, THE RISK IS HIGHER FOR 922 00:42:08,296 --> 00:42:09,965 WOMEN, FOR BLACKS AND WHITES AND 923 00:42:09,965 --> 00:42:15,337 FOR PEOPLE WITH AN APOE 4 924 00:42:15,337 --> 00:42:16,972 ALLELE, PARTICULARLY FOUR 925 00:42:16,972 --> 00:42:18,306 ALLELES BUT IT'S HIGH FOR ALL 926 00:42:18,306 --> 00:42:19,307 AMERICANS WHO LIVE INTO OLDER 927 00:42:19,307 --> 00:42:24,179 AGE FROM ALL WALKS OF LIFE. 928 00:42:24,179 --> 00:42:34,723 AND MANY ARE UNPAID CAREGIVERS. 929 00:42:43,198 --> 00:42:45,567 DEMENTIA IS EXPENSIVE AND WILL 930 00:42:45,567 --> 00:42:46,868 IMPOSE A FAST GROWING ECONOMIC 931 00:42:46,868 --> 00:42:49,171 BURDEN IN THE COMING DECADES. 932 00:42:49,171 --> 00:42:51,840 USING DATA FROM THE HEALTH AND 933 00:42:51,840 --> 00:42:53,975 RETIREMENT STUDY, COLLEAGUES 934 00:42:53,975 --> 00:42:55,677 ESTIMATED ANNUAL FORMAL CARE 935 00:42:55,677 --> 00:42:57,546 COSTS, THAT IS CARE THAT'S 936 00:42:57,546 --> 00:43:00,816 PURCHASED IN THE MARKETPLACE IS 937 00:43:00,816 --> 00:43:02,918 CURRENTLY $200 BILLION PER YEAR. 938 00:43:02,918 --> 00:43:04,619 THIS IS JUST IN THE UNITED 939 00:43:04,619 --> 00:43:06,621 STATES. 940 00:43:06,621 --> 00:43:08,623 THESE FORMAL CARE COSTS ARE 941 00:43:08,623 --> 00:43:11,293 PROJECTED TO REACH $1.4 TRILLION 942 00:43:11,293 --> 00:43:12,494 BY YEAR 2060. 943 00:43:12,494 --> 00:43:16,097 IF THE COST OF INFORMAL 944 00:43:16,097 --> 00:43:17,666 CAREGIVING SUCH AS FOREGONE 945 00:43:17,666 --> 00:43:20,202 WAGES BY THE CAREGIVER THE COST 946 00:43:20,202 --> 00:43:20,635 HIGHER. 947 00:43:20,635 --> 00:43:23,071 WHILE THE PROJECTIONS ARE 948 00:43:23,071 --> 00:43:24,573 ECONOMICALLY DEVASTATING THEY'RE 949 00:43:24,573 --> 00:43:26,408 NOT SET IN STONE. 950 00:43:26,408 --> 00:43:28,543 INVESTMENTS IN RESEARCH AND 951 00:43:28,543 --> 00:43:30,245 SYSTEMS OF CARE COULD MITIGATE 952 00:43:30,245 --> 00:43:33,949 THIS ECONOMIC BURDEN BY 953 00:43:33,949 --> 00:43:35,383 PREVENTING OR DELAYING ONSET AND 954 00:43:35,383 --> 00:43:36,618 CHANGES IN LIFE AND TREATMENTS 955 00:43:36,618 --> 00:43:40,622 THAT MODIFY THE DISEASE PROCESS 956 00:43:40,622 --> 00:43:42,257 AND SMART SYSTEMS OF CARE. 957 00:43:42,257 --> 00:43:44,626 THAT SUPPORT THE PERSON LIVING 958 00:43:44,626 --> 00:43:51,166 WITH DEMENTIA AND CAREGIVERS AND 959 00:43:51,166 --> 00:43:52,634 LOWER TOTAL COST AND IT WILL 960 00:43:52,634 --> 00:43:55,370 REQUIRE SMART AND EFFECTIVE 961 00:43:55,370 --> 00:43:56,338 COORDINATION AND COLLABORATION 962 00:43:56,338 --> 00:43:58,940 BETWEEN SCIENTISTS AND FEDERAL 963 00:43:58,940 --> 00:44:03,545 AGENCIES IN THE PRIVATE CENTER. 964 00:44:03,545 --> 00:44:06,481 THERE HAVE BEEN IMPORTANT RECENT 965 00:44:06,481 --> 00:44:07,482 BREAKTHROUGHS IN ADRD SCIENCE. 966 00:44:07,482 --> 00:44:09,918 YOU HEARD OF SOME THIS MORNING 967 00:44:09,918 --> 00:44:10,952 FROM DR. KOROSHETZ. 968 00:44:10,952 --> 00:44:12,254 I HAVE THE PLEASURE OF 969 00:44:12,254 --> 00:44:13,922 SUMMARIZING SOME OF THE 970 00:44:13,922 --> 00:44:14,990 BREAKTHROUGHS IN THE AREA OF 971 00:44:14,990 --> 00:44:16,958 PREVENTION, DIAGNOSIS, TREATMENT 972 00:44:16,958 --> 00:44:27,135 AND CARE. 973 00:44:28,436 --> 00:44:32,807 WE CAN PREVENT DATA THROUGH 974 00:44:32,807 --> 00:44:34,943 LIFESTYLE AND THERE'S EVIDENCE 975 00:44:34,943 --> 00:44:37,812 UNTREATED VISION LOSS AND HIGH 976 00:44:37,812 --> 00:44:40,048 HDL CHOLESTEROL ARE RISK FACTORS 977 00:44:40,048 --> 00:44:40,715 FOR DEMENTIA. 978 00:44:40,715 --> 00:44:43,518 THESE IMPORTANT RISK FACTORS 979 00:44:43,518 --> 00:44:44,786 COMBINED WITH THOSE THEY 980 00:44:44,786 --> 00:44:46,087 MODELLED PREVIOUSLY ACCOUNT FOR 981 00:44:46,087 --> 00:44:50,926 45% OF DEMENTIA RISK. 982 00:44:50,926 --> 00:44:52,561 WE'VE ALSO LEARNED ADDRESSING 983 00:44:52,561 --> 00:44:54,429 MODIFIABLE RISK FACTORS IN 984 00:44:54,429 --> 00:44:58,266 AT-RISK INDIVIDUALS CAN SLOW OR 985 00:44:58,266 --> 00:45:00,635 PREVENT COGNITIVE DECLINE. 986 00:45:00,635 --> 00:45:02,737 AGGRESSIVE BLOOD PRESSURE 987 00:45:02,737 --> 00:45:03,271 MANAGEMENT REDUCES MILD 988 00:45:03,271 --> 00:45:05,040 COGNITIVE IMPAIRMENT RISK. 989 00:45:05,040 --> 00:45:08,643 IN THE FINGERS TRIAL, AN 990 00:45:08,643 --> 00:45:10,712 INTERVENTION THAT TARGETED DIET, 991 00:45:10,712 --> 00:45:12,380 EXERCISE, COGNITIVE AND SOCIAL 992 00:45:12,380 --> 00:45:14,115 STIMULATION AND VASCULAR RISK 993 00:45:14,115 --> 00:45:16,885 MONITORING IN AT-RISK 994 00:45:16,885 --> 00:45:18,420 INDIVIDUALS HAD SIGNIFICANT 995 00:45:18,420 --> 00:45:19,754 IMPROVEMENTS IN COGNITIVE 996 00:45:19,754 --> 00:45:20,021 FUNCTION. 997 00:45:20,021 --> 00:45:22,324 THE U.S. POINTER IS EXTENDING 998 00:45:22,324 --> 00:45:24,459 THE WORK BY TESTING A 999 00:45:24,459 --> 00:45:25,327 POTENTIALLY SCALABLE 1000 00:45:25,327 --> 00:45:28,163 INTERVENTION IN A LARGE GROUP OF 1001 00:45:28,163 --> 00:45:29,464 AMERICANS ACROSS THE UNITED 1002 00:45:29,464 --> 00:45:29,698 STATES. 1003 00:45:29,698 --> 00:45:33,435 AND TRIAL RESULTS ARE EXPECTED 1004 00:45:33,435 --> 00:45:38,006 THIS YEAR. 1005 00:45:38,006 --> 00:45:43,078 WORLDWIDE FINGERS DEMENTIA 1006 00:45:43,078 --> 00:45:44,613 TRIALS TO TEST STRATEGIES ACROSS 1007 00:45:44,613 --> 00:45:50,018 DIVERSE POPULATIONS. 1008 00:45:50,018 --> 00:45:52,621 BREAKTHROUGH NUMBER TWO, WE CAN 1009 00:45:52,621 --> 00:45:53,455 IDENTIFY DISEASE IN LIVING 1010 00:45:53,455 --> 00:45:56,224 PEOPLE WITH INEXPENSIVE AND 1011 00:45:56,224 --> 00:45:58,627 NON-INVASIVE TESTS. 1012 00:45:58,627 --> 00:46:00,762 PREVIOUSLY, WE COULD ONLY 1013 00:46:00,762 --> 00:46:02,030 IDENTIFY ALZHEIMER'S DISEASE IN 1014 00:46:02,030 --> 00:46:02,897 LIVING PEOPLE USING EXPENSIVE 1015 00:46:02,897 --> 00:46:07,836 AND INVASIVE TESTS, HEAD IMAGING 1016 00:46:07,836 --> 00:46:10,005 AND SPINAL TAPS. 1017 00:46:10,005 --> 00:46:12,574 IN THE STUDIES HERE IN SWEDEN, 1018 00:46:12,574 --> 00:46:16,444 WHEN THE AD PLASMA BIOMARKER TAU 1019 00:46:16,444 --> 00:46:20,615 217 WAS AVAILABLE, THE ACCURACY 1020 00:46:20,615 --> 00:46:24,252 OF DEMENTIA SPECIALISTS SHOWN IN 1021 00:46:24,252 --> 00:46:26,287 BLUE AND PRIMARY CARE PROVIDERS 1022 00:46:26,287 --> 00:46:29,057 IN A AND B WERE IDENTIFYING 1023 00:46:29,057 --> 00:46:32,327 ALZHEIMER'S DISEASE PATHOLOGY 1024 00:46:32,327 --> 00:46:34,596 IMPROVED SUBSTANTIALLY TO 91%. 1025 00:46:34,596 --> 00:46:36,631 YOU HEARD FROM DR. KOROSHETZ HOW 1026 00:46:36,631 --> 00:46:37,699 SUBSTANTIAL BREAKTHROUGH BEING 1027 00:46:37,699 --> 00:46:39,601 MADE IN BIOMARKERS FOR 1028 00:46:39,601 --> 00:46:41,936 PARKINSON'S DISEASE AND LEWY 1029 00:46:41,936 --> 00:46:44,239 BODY DEMENTIA. 1030 00:46:44,239 --> 00:46:46,341 ALPHA SYNUCLEIN CAN BE MEASURED 1031 00:46:46,341 --> 00:46:50,078 IN BLOOD, SALIVA AND SKIN AND 1032 00:46:50,078 --> 00:46:51,446 PLASMA AND OTHER SCALABLE 1033 00:46:51,446 --> 00:46:53,815 BIOMARKERS EXTEND ACCESS TO 1034 00:46:53,815 --> 00:46:56,151 ACCURATE DIAGNOSIS AND HAVE 1035 00:46:56,151 --> 00:46:58,453 FACILITATED A MOVEMENT TOWARDS 1036 00:46:58,453 --> 00:47:00,622 BIOLOGICAL STAGING OF DISEASE. 1037 00:47:00,622 --> 00:47:02,190 THESE ADVANCES PROVIDE 1038 00:47:02,190 --> 00:47:02,824 GROUNDBREAKING NEW OPPORTUNITIES 1039 00:47:02,824 --> 00:47:05,960 TO IMPROVE CARE AND FIND CURES. 1040 00:47:05,960 --> 00:47:09,698 BUT NEXT WE NEED TO MOVE TOWARDS 1041 00:47:09,698 --> 00:47:12,333 STANDARDIZED DIAGNOSTIC PATHWAYS 1042 00:47:12,333 --> 00:47:14,602 THAT INCORPORATE THESE MARKERS 1043 00:47:14,602 --> 00:47:16,171 WITH OTHER CLINICAL DATA. 1044 00:47:16,171 --> 00:47:17,572 WE NEED TO REDUCE VARIABILITY 1045 00:47:17,572 --> 00:47:19,574 DUE TO HOW THE SAMPLES ARE 1046 00:47:19,574 --> 00:47:22,811 HANDLED AND PROCESS AND ADJUST 1047 00:47:22,811 --> 00:47:24,412 RESULTS BASED ON PATIENT 1048 00:47:24,412 --> 00:47:26,314 COMORBIDITIES THAT IMPACT 1049 00:47:26,314 --> 00:47:26,548 RESULTS. 1050 00:47:26,548 --> 00:47:29,117 AND THE NEXT POINT WILL BE A BIG 1051 00:47:29,117 --> 00:47:30,318 FOCUS OF THE SUMMIT. 1052 00:47:30,318 --> 00:47:32,287 WE NEED TO ADVANCE BIOMARKERS TO 1053 00:47:32,287 --> 00:47:36,624 THE OTHER BIOLOGICAL MARKERS OF 1054 00:47:36,624 --> 00:47:43,364 ADRD INCLUDING SYNUCLEIN AND 1055 00:47:43,364 --> 00:47:45,834 THERE'S A MULTI-SITE NATIONAL 1056 00:47:45,834 --> 00:47:51,206 CONSORTIUM TO CONSOLIDATE AND 1057 00:47:51,206 --> 00:47:52,040 IDENTIFY BIOMARKERS USED IN 1058 00:47:52,040 --> 00:47:52,674 DEMENTIA CLINICAL TRIALS. 1059 00:47:52,674 --> 00:47:55,810 THE BIOMARKERS HAVE UNDER GONE 1060 00:47:55,810 --> 00:47:57,278 INSTRUMENTAL VALIDATION AND NOW 1061 00:47:57,278 --> 00:48:01,883 UNDERGOING CLINICAL VALIDATION. 1062 00:48:01,883 --> 00:48:04,886 BREAKTHROUGH NUMBER THREE, WE 1063 00:48:04,886 --> 00:48:06,988 CAN IMPROVE DIAGNOSIS OF 1064 00:48:06,988 --> 00:48:08,556 DEMENTIA IN PRIMARY CARE. 1065 00:48:08,556 --> 00:48:11,092 YOU HEARD A BIT OF THIS FROM 1066 00:48:11,092 --> 00:48:15,163 DR. KOROSHETZ. 1067 00:48:15,163 --> 00:48:16,331 AND THERE'S BEEN FUNDING WHERE 1068 00:48:16,331 --> 00:48:18,333 PAIR DIMES HAVE BEEN DEVELOPED 1069 00:48:18,333 --> 00:48:19,334 AND IMPLEMENTED IN PRIMARY CARE 1070 00:48:19,334 --> 00:48:23,104 AND IMPROVED DETECTION AND 1071 00:48:23,104 --> 00:48:23,371 DIAGNOSIS. 1072 00:48:23,371 --> 00:48:25,940 THREE LARGE PRAGMATIC CLUSTER 1073 00:48:25,940 --> 00:48:28,476 TRIALS ARE UNDERWAY WITH RESULTS 1074 00:48:28,476 --> 00:48:29,811 EXPECTED IN 2027. 1075 00:48:29,811 --> 00:48:31,613 I ALSO HIGHLIGHT ON THE SLIDE 1076 00:48:31,613 --> 00:48:35,049 OTHER IMPORTANT INITIATIVES WITH 1077 00:48:35,049 --> 00:48:40,655 THE SAME GOAL THIS IS SO 1078 00:48:40,655 --> 00:48:41,656 IMPORTANT. 1079 00:48:41,656 --> 00:48:44,225 IF WE DON'T DETECT AND DIAGNOSIS 1080 00:48:44,225 --> 00:48:47,228 PEOPLE EARLY IN CARE WE CAN'T 1081 00:48:47,228 --> 00:48:48,263 CHANGE CARE. 1082 00:48:48,263 --> 00:48:50,765 AND TWO AMYLOID THERAPIES ARE 1083 00:48:50,765 --> 00:48:51,566 APPROVED FOR ALZHEIMER'S 1084 00:48:51,566 --> 00:48:51,966 DISEASE. 1085 00:48:51,966 --> 00:48:54,502 WHEN WE LAST HELD THE SUMMIT IN 1086 00:48:54,502 --> 00:48:56,671 2022, OUR FIELD DID NOT HAVE ANY 1087 00:48:56,671 --> 00:48:58,006 DISEASE MODIFYING THERAPIES TO 1088 00:48:58,006 --> 00:48:59,440 OFFER PATIENTS. 1089 00:48:59,440 --> 00:49:01,342 NOW, TWO THERAPIES THAT TARGET 1090 00:49:01,342 --> 00:49:04,579 AMYLOID ARE APPROVED FOR THE 1091 00:49:04,579 --> 00:49:07,582 TREATMENT OF EARLY STAGE 1092 00:49:07,582 --> 00:49:12,654 ALZHEIMER'S DISEASE. 1093 00:49:12,654 --> 00:49:13,888 PATIENTS MUST BE DIAGNOSED AT 1094 00:49:13,888 --> 00:49:15,156 THE EARLY STAGE TO QUALIFY. 1095 00:49:15,156 --> 00:49:19,527 THE DECLINE IN FUNCTION IS ABOUT 1096 00:49:19,527 --> 00:49:20,829 27% TO 40% SLOWER WHEN ON 1097 00:49:20,829 --> 00:49:22,997 TREATMENT WHICH MEANS PATIENTS 1098 00:49:22,997 --> 00:49:24,532 CAN STAY INDEPENDENT AND HOLD ON 1099 00:49:24,532 --> 00:49:27,135 TO WHAT MATTERS MOST TO THEM FOR 1100 00:49:27,135 --> 00:49:28,670 SEVERAL MONTHS LONGER THAN THEY 1101 00:49:28,670 --> 00:49:33,908 COULD WITHOUT THE TREATMENT. 1102 00:49:33,908 --> 00:49:36,678 HOWEVER THIS TREATMENT AFFECT IS 1103 00:49:36,678 --> 00:49:40,648 MODEST AND THE TREATMENT POSES A 1104 00:49:40,648 --> 00:49:43,618 RISK AND EXTENSIVE SCREENING IS 1105 00:49:43,618 --> 00:49:44,619 REQUIRED TO DETERMINE IF THE 1106 00:49:44,619 --> 00:49:45,620 PATIENT IS APPROPRIATE FOR THE 1107 00:49:45,620 --> 00:49:47,222 TREATMENT AND MOST DO NOT 1108 00:49:47,222 --> 00:49:49,424 QUALIFY. 1109 00:49:49,424 --> 00:49:52,427 WE NEED TO MOVE TOWARDS MORE 1110 00:49:52,427 --> 00:49:54,028 EFFECTIVE AND PERSONALIZED 1111 00:49:54,028 --> 00:49:56,598 TREATMENT FOR PATIENTS TAILORED 1112 00:49:56,598 --> 00:49:58,867 TO EACH PATIENT'S RISKS AND 1113 00:49:58,867 --> 00:50:02,670 BIOMARKERS AND PROGRESS IS BEING 1114 00:50:02,670 --> 00:50:05,940 MADE AND TAU THERAPIES IS 1115 00:50:05,940 --> 00:50:09,043 EXCITING AND TAU AGGREGATION IS 1116 00:50:09,043 --> 00:50:10,478 MORE LINKED TO COGNITIVE 1117 00:50:10,478 --> 00:50:11,179 DECLINE. 1118 00:50:11,179 --> 00:50:13,781 PROMISING GENE THERAPY APPROACH 1119 00:50:13,781 --> 00:50:18,253 OR REDUCING THE IMPACT OF APOE 4 1120 00:50:18,253 --> 00:50:20,488 GENE AND INCREASING THE 1121 00:50:20,488 --> 00:50:21,556 PROTECTIVE VARIANT AND REDUCING 1122 00:50:21,556 --> 00:50:24,359 THE PRODUCTION OF AMYLOID BETA. 1123 00:50:24,359 --> 00:50:26,294 WE KNOW THERE'S MULTIPLE 1124 00:50:26,294 --> 00:50:28,963 PATHOLOGIES IN MOST PATIENTS AND 1125 00:50:28,963 --> 00:50:29,497 WE'LL BE MOVING TOWARDS 1126 00:50:29,497 --> 00:50:32,533 COMBINATION THERAPIES. 1127 00:50:32,533 --> 00:50:33,534 IN SUMMARY, TO THE TREATMENT 1128 00:50:33,534 --> 00:50:36,671 AFFECT OF THE ANTIAMYLOID 1129 00:50:36,671 --> 00:50:38,006 THERAPIES IS MODEST BUT 1130 00:50:38,006 --> 00:50:39,107 REPRESENT AN IMPORTANT STEP 1131 00:50:39,107 --> 00:50:40,675 FORWARD AND WE MUST KEEP OUR 1132 00:50:40,675 --> 00:50:43,278 FOOT ON THE GAS TO HAVE MORE 1133 00:50:43,278 --> 00:50:47,181 TREATMENTS AVAILABLE FOR 1134 00:50:47,181 --> 00:50:50,752 PRECISION TREATMENT OF ADRD. 1135 00:50:50,752 --> 00:50:52,120 NIH FUNDS A WIDE RANGE OF 1136 00:50:52,120 --> 00:50:53,988 CLINICAL TRIALS FOCUSSED ON THE 1137 00:50:53,988 --> 00:50:55,924 TREATMENT OF ADRD. 1138 00:50:55,924 --> 00:51:00,428 THERE'S BEEN A SHIFT FROM 36% OF 1139 00:51:00,428 --> 00:51:02,196 CLINICAL TRIALS WITH 1140 00:51:02,196 --> 00:51:03,965 PHARMACOLOGIC AGENTS TARGETING 1141 00:51:03,965 --> 00:51:10,972 AMYLOID IN 2013 TO 2023, 15%. 1142 00:51:10,972 --> 00:51:14,208 ALSO YOU CAN SEE THERE'S BEEN 1143 00:51:14,208 --> 00:51:18,413 SUBSTANTIAL INVESTMENT IN WILL 1144 00:51:18,413 --> 00:51:20,648 NON-PHARMACOLOGIC APPROACHES. 1145 00:51:20,648 --> 00:51:22,016 BREAKTHROUGH NUMBER 5, WE HAVE 1146 00:51:22,016 --> 00:51:23,718 DEMENTIA CARE THAT ADDRESSES 1147 00:51:23,718 --> 00:51:27,488 PATIENT AND CAREGIVER NEEDS. 1148 00:51:27,488 --> 00:51:28,656 MEDICARE'S GUIDE PAYMENT MODEL 1149 00:51:28,656 --> 00:51:32,627 RELEASED IN 2024 IS MEDICARE'S 1150 00:51:32,627 --> 00:51:34,128 FIRST PAYMENT MODEL THAT 1151 00:51:34,128 --> 00:51:37,332 INCLUDES SERVICES AND SUPPORTS 1152 00:51:37,332 --> 00:51:39,133 FOR THE CAREGIVER. 1153 00:51:39,133 --> 00:51:40,835 A TRUE BREAKTHROUGH. 1154 00:51:40,835 --> 00:51:43,237 THERE'S A COLLABORATIVE CARE 1155 00:51:43,237 --> 00:51:44,405 MODEL SPECIFICALLY DESIGN FOR 1156 00:51:44,405 --> 00:51:44,672 DEMENTIA. 1157 00:51:44,672 --> 00:51:48,609 YOU SEE IN THE INFOGRAPHIC FROM 1158 00:51:48,609 --> 00:51:52,447 CMS THE REQUIRED COMPONENTS AND 1159 00:51:52,447 --> 00:51:53,281 WHEN DEMENTIA CARE ADDRESSES NOT 1160 00:51:53,281 --> 00:51:55,850 ONLY THE MEDICAL AND SOCIAL 1161 00:51:55,850 --> 00:51:58,353 NEEDS OF THE PATIENT BUT ALSO 1162 00:51:58,353 --> 00:52:00,521 THE SUPPORTS THE CAREGIVER, IT 1163 00:52:00,521 --> 00:52:02,023 IMPROVES QUALITY OF LIFE FOR THE 1164 00:52:02,023 --> 00:52:03,758 PATIENT, REDUCES BURDEN ON THE 1165 00:52:03,758 --> 00:52:06,728 CAREGIVERS AND SAVES MEDICARE 1166 00:52:06,728 --> 00:52:09,263 MONEY BY PREVENTING UNNECESSARY 1167 00:52:09,263 --> 00:52:09,597 EMERGENCIES. 1168 00:52:09,597 --> 00:52:11,966 WITH COLLABORATIVE CARE FAMILIES 1169 00:52:11,966 --> 00:52:14,135 SHIFT TOWARDS A MORE PROACTIVE 1170 00:52:14,135 --> 00:52:16,070 AND STABLE EXPERIENCE OF 1171 00:52:16,070 --> 00:52:16,337 DEMENTIA. 1172 00:52:16,337 --> 00:52:19,173 THIS BREAKTHROUGH HAS BEEN MADE 1173 00:52:19,173 --> 00:52:20,641 POSSIBLE BY EFFECTIVE 1174 00:52:20,641 --> 00:52:21,676 COORDINATION BETWEEN 1175 00:52:21,676 --> 00:52:22,410 RESEARCHERS, POLICY LEADERS AND 1176 00:52:22,410 --> 00:52:24,979 FEDERAL AGENCIES. 1177 00:52:24,979 --> 00:52:28,649 STILL, MUCH MORE WORK REMAINS TO 1178 00:52:28,649 --> 00:52:29,851 OPTIMIZE AND WIDELY IMPLEMENT 1179 00:52:29,851 --> 00:52:34,822 QUALITY DEMENTIA CARE AND THE 1180 00:52:34,822 --> 00:52:36,591 MECHANISMS OF ITS EFFECTIVENESS. 1181 00:52:36,591 --> 00:52:37,258 YOU'LL HEAR MORE IN THE NEXT 1182 00:52:37,258 --> 00:52:39,927 SESSION TODAY. 1183 00:52:39,927 --> 00:52:43,164 SO NOW I WILL BRIEFLY SHARE WITH 1184 00:52:43,164 --> 00:52:45,299 YOU THE TOP PRIORITY 1185 00:52:45,299 --> 00:52:47,635 RECOMMENDATIONS FROM EACH OF THE 1186 00:52:47,635 --> 00:52:48,636 SESSIONS. 1187 00:52:48,636 --> 00:52:51,873 STARTING WITH SESSIONS ON THREE 1188 00:52:51,873 --> 00:52:53,174 CATEGORIES OF DISEASE. 1189 00:52:53,174 --> 00:52:56,044 FRONTAL TEMPORAL DEMENTIA, 1190 00:52:56,044 --> 00:52:56,677 VASCULAR COGNITIVE IMPAIRMENT 1191 00:52:56,677 --> 00:52:58,146 AND LEWY BODY. 1192 00:52:58,146 --> 00:53:02,083 TO HELP KEEP US ON TIME I WON'T 1193 00:53:02,083 --> 00:53:04,652 READ THESE TO YOU AND URGE YOU 1194 00:53:04,652 --> 00:53:12,560 TO SNAP A PICTURE. 1195 00:53:12,560 --> 00:53:14,228 THESE ARE THE TOP 1196 00:53:14,228 --> 00:53:16,397 RECOMMENDATIONS AND TWO THAT ARE 1197 00:53:16,397 --> 00:53:17,832 TOP PRIORITY AND THE SESSION IS 1198 00:53:17,832 --> 00:53:19,233 LED BY DR. KARCH AND IRWIN. 1199 00:53:19,233 --> 00:53:20,668 THEY'LL BE PRESENTING LATER 1200 00:53:20,668 --> 00:53:24,338 TODAY. 1201 00:53:24,338 --> 00:53:25,073 VASCULAR COGNITIVE IMPAIRMENT 1202 00:53:25,073 --> 00:53:28,076 AND DEMENTIA. 1203 00:53:28,076 --> 00:53:31,746 THIS SESSION LED BY DR. BASATI 1204 00:53:31,746 --> 00:53:35,183 AND DR. LU. 1205 00:53:35,183 --> 00:53:41,155 NEXT, OUR SESSION ON LEWY BODY 1206 00:53:41,155 --> 00:53:45,259 DISEASE ALSO HAS TWO PRIORITY 1 1207 00:53:45,259 --> 00:53:48,663 RECOMMENDATIONS LED BY DR 1208 00:53:48,663 --> 00:53:52,767 DR. GALVIN AND POSTIN. 1209 00:53:52,767 --> 00:53:59,407 NEXT, WE HAVE THREE SESSIONS ON 1210 00:53:59,407 --> 00:54:03,277 SPECIAL TOPICS AND POST DBI AND 1211 00:54:03,277 --> 00:54:05,179 THESE ARE SESSIONS THAT WERE 1212 00:54:05,179 --> 00:54:06,614 FIRST INTRODUCED IN 2019 AND 1213 00:54:06,614 --> 00:54:08,649 CONTINUE TO BE FEATURED AT THE 1214 00:54:08,649 --> 00:54:11,152 SUMMIT. 1215 00:54:11,152 --> 00:54:16,657 THEY EACH HAVE FOUR 1216 00:54:16,657 --> 00:54:19,894 RECOMMENDAT 1217 00:54:19,894 --> 00:54:20,261 RECOMMENDATIONS. 1218 00:54:20,261 --> 00:54:22,897 AND THEN A SESSION ON THE 1219 00:54:22,897 --> 00:54:23,831 EXPOSOME. 1220 00:54:23,831 --> 00:54:29,737 THIS HAS EVOLVED SINCE 2022. 1221 00:54:29,737 --> 00:54:33,374 WE HAD A SESSION POST-COVID. 1222 00:54:33,374 --> 00:54:34,308 DR. LOOKIN AND KIPNIS ARE THE 1223 00:54:34,308 --> 00:54:39,881 CHAIRS. 1224 00:54:39,881 --> 00:54:42,216 WE ALSO HAVE THREE SESSIONS ON 1225 00:54:42,216 --> 00:54:43,251 CROSS-CUTTING THEMES. 1226 00:54:43,251 --> 00:54:44,752 WE HAVE A BASIC ON BASIC AND 1227 00:54:44,752 --> 00:54:45,887 CLINICAL DISCOVERY RESEARCH THAT 1228 00:54:45,887 --> 00:54:51,959 WILL KICK OFF OUR DAY TOMORROW. 1229 00:54:51,959 --> 00:54:58,466 THEY HAVE FOUR RECOMMENDA RECOM 1230 00:54:58,466 --> 00:55:03,371 THIS ACAN CHAIRED BY DR. IADECOL 1231 00:55:03,371 --> 00:55:07,275 AND CARLSSON AND THOSE AT RISK 1232 00:55:07,275 --> 00:55:10,311 LIVING WITH AD/ADRD YOU'LL HEAR 1233 00:55:10,311 --> 00:55:12,580 THIS ON THE THIRD DAY CHAIRED BY 1234 00:55:12,580 --> 00:55:20,655 DR. GLYMOUR AND THEN THE CROSS 1235 00:55:20,655 --> 00:55:23,291 CUTTING THEMES WILL BE NEXT IN 1236 00:55:23,291 --> 00:55:33,534 JUST A MOMENT. 1237 00:55:59,860 --> 00:56:02,730 SO, I'LL JUMP IN I THINK. 1238 00:56:02,730 --> 00:56:04,865 WE'LL LAUNCH OUR FIRST SESSION 1239 00:56:04,865 --> 00:56:06,734 OF THE ADRD SUMMIT, 2025 WITH 1240 00:56:06,734 --> 00:56:09,937 THE SESSION ON MULTIPLE ETIOLOGY 1241 00:56:09,937 --> 00:56:11,239 DEMENTIA RESEARCH FOR 1242 00:56:11,239 --> 00:56:12,673 IMPLEMENTATION OF DISCOVERIES 1243 00:56:12,673 --> 00:56:13,574 INTO PRACTICE. 1244 00:56:13,574 --> 00:56:16,410 AND THIS IS A NEW SESSION FOR 1245 00:56:16,410 --> 00:56:17,845 THE 2025 SUMMIT. 1246 00:56:17,845 --> 00:56:20,281 YOU'LL BE HEARING TODAY FROM MY 1247 00:56:20,281 --> 00:56:22,183 CLOSE COLLEAGUES WHO WILL 1248 00:56:22,183 --> 00:56:22,583 PRESENT WITH ME. 1249 00:56:22,583 --> 00:56:25,019 DR. WOOD WITH FROM THE AMERICAN 1250 00:56:25,019 --> 00:56:28,389 ACADEMY OF FAMILY PHYSICIANS, 1251 00:56:28,389 --> 00:56:29,690 DR. HAGERTY-LINGLER FROM THE 1252 00:56:29,690 --> 00:56:32,026 UNIVERSITY OF PITTSBURGH AND 1253 00:56:32,026 --> 00:56:35,263 DR. SNYDER FROM THE ALZHEIMER'S 1254 00:56:35,263 --> 00:56:43,037 ASSOCIATION. 1255 00:56:43,037 --> 00:56:44,872 I'LL START BY SAYING AGAIN I 1256 00:56:44,872 --> 00:56:52,647 HAVE NO FINANCIAL DISCLOSURES. 1257 00:56:52,647 --> 00:56:53,114 ALL RIGHT. 1258 00:56:53,114 --> 00:56:56,083 SO WE HAVE THIS NEW SESSION FOR 1259 00:56:56,083 --> 00:57:00,821 THIS SUMMIT. 1260 00:57:00,821 --> 00:57:01,789 THIS IS CALLED RESEARCH FOR 1261 00:57:01,789 --> 00:57:04,659 IMPLEMENTATION OF DISCOVERIES 1262 00:57:04,659 --> 00:57:05,926 INTO PRACTICE. 1263 00:57:05,926 --> 00:57:09,030 THE FIRST GOAL OF THE NAPA 1264 00:57:09,030 --> 00:57:12,667 NATIONAL PLAN IS TO PREVENT AND 1265 00:57:12,667 --> 00:57:14,635 EFFECTIVELY TREAT AD/ADRD BY 1266 00:57:14,635 --> 00:57:15,102 2025. 1267 00:57:15,102 --> 00:57:17,305 THIS IS A MOMENT TO REFLECT ON 1268 00:57:17,305 --> 00:57:19,540 WHAT NEEDS TO BE DONE TO GET THE 1269 00:57:19,540 --> 00:57:22,310 BREAKTHROUGHS INTO PRACTICE TO 1270 00:57:22,310 --> 00:57:23,244 BENEFIT PATIENTS, FAMILIES AND 1271 00:57:23,244 --> 00:57:25,212 SYSTEMS OF CARE. 1272 00:57:25,212 --> 00:57:27,181 BECAUSE THE RECENT ADVANCES ARE 1273 00:57:27,181 --> 00:57:28,082 NOT YET AVAILABLE TO MOST 1274 00:57:28,082 --> 00:57:31,319 INDIVIDUALS AT RISK FOR OR 1275 00:57:31,319 --> 00:57:32,687 LIVING WITH AD/ADRD. 1276 00:57:32,687 --> 00:57:35,523 SESSION 1 IS FOCUSSED ON 1277 00:57:35,523 --> 00:57:36,657 IDENTIFYING KEY AREAS OF 1278 00:57:36,657 --> 00:57:38,392 RESEARCH NEEDED TO CAPITALIZE ON 1279 00:57:38,392 --> 00:57:40,661 THE BREAKTHROUGHS AND ENSURE 1280 00:57:40,661 --> 00:57:42,863 THEY REACH PATIENTS, FAMILIES, 1281 00:57:42,863 --> 00:57:44,665 HEALTH CARE PROVIDERS AND HEALTH 1282 00:57:44,665 --> 00:57:51,472 SYSTEMS. 1283 00:57:51,472 --> 00:57:53,240 WE PRESENT FOR YOUR 1284 00:57:53,240 --> 00:57:54,909 CONSIDERATION FOUR 1285 00:57:54,909 --> 00:57:55,843 RECOMMENDATIONS THAT ARE 1286 00:57:55,843 --> 00:57:56,644 IMPORTANT ACROSS ALL STAGES OF 1287 00:57:56,644 --> 00:57:59,780 BRAIN HEALTH. 1288 00:57:59,780 --> 00:58:01,582 OUR PRIORITY 1 RECOMMENDATION IS 1289 00:58:01,582 --> 00:58:04,352 FOCUSSED ON IMPROVING DETECTION, 1290 00:58:04,352 --> 00:58:07,054 DIAGNOSIS AND LINKAGES TO CARE. 1291 00:58:07,054 --> 00:58:08,789 OUR PRIORITY 2 IS FOCUSSED ON 1292 00:58:08,789 --> 00:58:11,192 IMPROVING ACCESS TO QUALITY CARE 1293 00:58:11,192 --> 00:58:14,128 WHICH IS PARTICULARLY IMPORTANT 1294 00:58:14,128 --> 00:58:14,962 AROUND THE DIAGNOSIS AND INITIAL 1295 00:58:14,962 --> 00:58:18,799 TREATMENT PERIOD. 1296 00:58:18,799 --> 00:58:20,668 OUR PRIORITY 3 RECOMMENDATION IS 1297 00:58:20,668 --> 00:58:24,872 ON DEMENTIA CARE AND PRIORITY 4 1298 00:58:24,872 --> 00:58:30,010 IS ON PRIMARY AND SECONDARY 1299 00:58:30,010 --> 00:58:31,812 PREVENTION. 1300 00:58:31,812 --> 00:58:34,115 MOST THE RESEARCH THAT WE'RE 1301 00:58:34,115 --> 00:58:35,950 RECOMMENDING USES THE METHODS OF 1302 00:58:35,950 --> 00:58:36,650 IMPLEMENTATION AND DISSEMINATION 1303 00:58:36,650 --> 00:58:40,154 SCIENCE WITH THE GOAL TO IMPROVE 1304 00:58:40,154 --> 00:58:41,722 PATIENT OUTCOMES AND ENHANCE 1305 00:58:41,722 --> 00:58:42,590 CARE QUALITY. 1306 00:58:42,590 --> 00:58:45,192 THIS TYPE OF RESEARCH IS BEST 1307 00:58:45,192 --> 00:58:46,660 CONDUCTED AS A COLLABORATION 1308 00:58:46,660 --> 00:58:50,564 BETWEEN SCIENTISTS AND 1309 00:58:50,564 --> 00:58:51,632 PRACTITIONERS WITH 1310 00:58:51,632 --> 00:58:52,867 BI-DIRECTIONAL LEARNING 1311 00:58:52,867 --> 00:58:53,434 THROUGHOUT THE INTEGRATION 1312 00:58:53,434 --> 00:58:59,774 PROCESS. 1313 00:58:59,774 --> 00:59:02,910 PRIMARY CARE PLAYS A CRUCIAL 1314 00:59:02,910 --> 00:59:04,578 ROLE IN THE RESEARCH RECOMMENDED 1315 00:59:04,578 --> 00:59:05,246 BY THE SESSION. 1316 00:59:05,246 --> 00:59:07,948 MOST PCPs FEEL THEY'RE IN THE 1317 00:59:07,948 --> 00:59:09,950 FRONT LINES OF PROVIDING 1318 00:59:09,950 --> 00:59:12,653 DEMENTIA CARE YET NOT PREPARED 1319 00:59:12,653 --> 00:59:21,228 TO PROVIDE THIS CARE. 1320 00:59:21,228 --> 00:59:23,697 I WANT TO THANK MY INCREDIBLE 1321 00:59:23,697 --> 00:59:24,632 COMMITTEE MEMBERS WORKING WITH 1322 00:59:24,632 --> 00:59:26,133 ME TO PREPARE THE 1323 00:59:26,133 --> 00:59:28,669 RECOMMENDATIONS WE PRESENT TODAY 1324 00:59:28,669 --> 00:59:33,107 FOR YOUR INPUT. 1325 00:59:33,107 --> 00:59:35,376 I'LL PRESENT NOW OUR 1326 00:59:35,376 --> 00:59:36,644 RECOMMENDATION ON CARE. 1327 00:59:36,644 --> 00:59:39,513 WE RECOMMEND TO CONDUCT RESEARCH 1328 00:59:39,513 --> 00:59:42,683 TO ENHANCE THE EFFICIENCY AND 1329 00:59:42,683 --> 00:59:44,018 EFFECTIVENESS OF EVIDENCE-BASED 1330 00:59:44,018 --> 00:59:45,052 AND EVIDENCE-INFORMED 1331 00:59:45,052 --> 00:59:46,520 COLLABORATIVE CARE MODELS THAT 1332 00:59:46,520 --> 00:59:47,621 SUPPORT THE NEEDS OF PATIENTS 1333 00:59:47,621 --> 00:59:52,059 AND CARE PARTNERS AT KEY POINTS 1334 00:59:52,059 --> 00:59:54,829 IN THE AD/ADRD CARE JOURNEY FROM 1335 00:59:54,829 --> 00:59:56,664 DIAGNOSIS TO END OF LIFE 1336 00:59:56,664 --> 00:59:58,098 INCLUDING POPULATIONS MOST AT 1337 00:59:58,098 --> 01:00:08,542 RISK FOR POORER OUTCOMES. 1338 01:00:17,351 --> 01:00:19,153 AND A PATIENT SAID HIS HEART 1339 01:00:19,153 --> 01:00:21,355 DISEASE WAS TOUGH BUT THINGS 1340 01:00:21,355 --> 01:00:22,490 REALLY FELL A PART WHEN HIS 1341 01:00:22,490 --> 01:00:24,091 MEMORY STARTED TO GO AND I FELT 1342 01:00:24,091 --> 01:00:27,294 STUM IN HIS ENDLESS CYCLE ER 1343 01:00:27,294 --> 01:00:28,662 VISITS AND HOSPITAL STAYS AND I 1344 01:00:28,662 --> 01:00:30,231 WAS EXHAUSTED TRYING TO FIGURE 1345 01:00:30,231 --> 01:00:31,866 IT OUT ON MY OWN WITH NO ONE 1346 01:00:31,866 --> 01:00:32,833 HELPING ME FIGURE IT OUT. 1347 01:00:32,833 --> 01:00:35,369 I FELT ALONE JUST TRYING TO KEEP 1348 01:00:35,369 --> 01:00:42,343 MY DAD SAFE. 1349 01:00:42,343 --> 01:00:43,410 THIS SESSION'S RECOMMENDATION ON 1350 01:00:43,410 --> 01:00:45,212 CARE IS FOCUSSED ON 1351 01:00:45,212 --> 01:00:48,782 COLLABORATIVE CARE FOR DEMENTIA 1352 01:00:48,782 --> 01:00:51,252 THIS USES MULTI-DISCIPLINARY 1353 01:00:51,252 --> 01:00:55,389 NEEDS TO MEET THE PSYCHOSOCIAL 1354 01:00:55,389 --> 01:00:56,457 NEEDS AND EMPHASIZES CARE 1355 01:00:56,457 --> 01:00:57,057 NAVIGATION AND SUPPORT. 1356 01:00:57,057 --> 01:00:58,993 THIS TYPE OF CARE HAS BEEN SHOWN 1357 01:00:58,993 --> 01:01:00,761 TO IMPROVE QUALITY OF LIFE FOR 1358 01:01:00,761 --> 01:01:05,099 PEOPLE LIVING WITH DEMENTIA, 1359 01:01:05,099 --> 01:01:08,402 CAREGIVER WELL BEING AND REDUCED 1360 01:01:08,402 --> 01:01:09,470 EMERGENCY ROOM VISIT AND REDUCED 1361 01:01:09,470 --> 01:01:10,638 TOTAL COST OF CARE AND REDUCING 1362 01:01:10,638 --> 01:01:16,477 POLY PHARMACY. 1363 01:01:16,477 --> 01:01:18,779 THERE'S BEEN SUBSTANTIAL HARD 1364 01:01:18,779 --> 01:01:19,914 WORK AND PROGRESS TOWARDS BETTER 1365 01:01:19,914 --> 01:01:27,154 DEMENTIA QUAR -- CARE FOR ALL. 1366 01:01:27,154 --> 01:01:28,055 AND THERE WERE COLLABORATIVE 1367 01:01:28,055 --> 01:01:30,224 DEMENTIA CARE MODELS. 1368 01:01:30,224 --> 01:01:33,694 THE 2019 ADRD SUMMIT INTRODUCED 1369 01:01:33,694 --> 01:01:37,831 A RECOMMENDATION FOR ADVANCED 1370 01:01:37,831 --> 01:01:39,533 DEMENTIA CARE AND NIH 1371 01:01:39,533 --> 01:01:42,303 SUBMISSIONED REVIEWS TO EVALUATE 1372 01:01:42,303 --> 01:01:44,371 THE DEMENTIA CARE AND THE 1373 01:01:44,371 --> 01:01:47,141 RESULTING WHITE PAPERS CONCLUDE 1374 01:01:47,141 --> 01:01:50,177 THE EVIDENCE WAS SUFFICIENT TO 1375 01:01:50,177 --> 01:01:51,779 IMPLEMENT COLLABORATIVE CARE 1376 01:01:51,779 --> 01:01:55,149 MODELS IN WITH EVALUATION 1377 01:01:55,149 --> 01:01:57,551 CONDUCTED TO CONTINUE EXPANDING 1378 01:01:57,551 --> 01:01:59,119 THE EVIDENCE BASE. 1379 01:01:59,119 --> 01:02:01,522 THIS INSPIRED IMPORTANT POLICY 1380 01:02:01,522 --> 01:02:02,823 WORK BY THE ALZHEIMER'S 1381 01:02:02,823 --> 01:02:04,325 ASSOCIATION AND IMPACT MOVEMENT 1382 01:02:04,325 --> 01:02:06,827 AND OTHERS WHICH LED TO THE 1383 01:02:06,827 --> 01:02:07,861 COMPREHENSIVE CARE FOR 1384 01:02:07,861 --> 01:02:09,730 ALZHEIMER'S ACT. 1385 01:02:09,730 --> 01:02:12,666 INTRODUCED IN THE HOUSE AND 1386 01:02:12,666 --> 01:02:23,143 SENATE WITH STRONG BUY -- 1387 01:02:24,178 --> 01:02:25,412 BIPARTISAN SUPPORT AND WE HAVE 1388 01:02:25,412 --> 01:02:27,348 THE MODEL AND THIS BRINGS US TO 1389 01:02:27,348 --> 01:02:30,217 THE ADRD SUMMIT OF 2025 WHERE WE 1390 01:02:30,217 --> 01:02:31,619 RECOMMEND THE NEXT CRUCIAL STEPS 1391 01:02:31,619 --> 01:02:33,554 IN RESEARCH TO MOVE US TOWARDS 1392 01:02:33,554 --> 01:02:36,690 BETTER DEMENTIA CARE FOR ALL. 1393 01:02:36,690 --> 01:02:38,125 THE SUBSTANTIAL PROGRESS TOWARDS 1394 01:02:38,125 --> 01:02:40,060 BETTER DEMENTIA CARE REFLECTS 1395 01:02:40,060 --> 01:02:40,694 EFFECTIVE COORDINATION BETWEEN 1396 01:02:40,694 --> 01:02:42,363 FEDERALLY FUNDED RESEARCH, 1397 01:02:42,363 --> 01:02:46,967 POLICY WORK, FEDERAL AGENCIES 1398 01:02:46,967 --> 01:02:48,769 AND BIPARTISAN LEGISLATORS BUT 1399 01:02:48,769 --> 01:02:57,444 WE STILL HAVE A WAYS TO GO. 1400 01:02:57,444 --> 01:02:58,646 CHALLENGES REMAIN. 1401 01:02:58,646 --> 01:03:01,715 THE EFFECT SIZES ARE SMALL AND 1402 01:03:01,715 --> 01:03:04,652 SOME TRIALS HAVE BEEN NEGATIVE. 1403 01:03:04,652 --> 01:03:06,220 AFFECT SIZES CAN VARY 1404 01:03:06,220 --> 01:03:07,054 SUBSTANTIALLY FROM DIFFERENT 1405 01:03:07,054 --> 01:03:08,656 TYPES OF PATIENTS AND CAREGIVERS 1406 01:03:08,656 --> 01:03:11,225 WHICH MAY HELP EXPLAIN THE SMALL 1407 01:03:11,225 --> 01:03:14,895 EFFECT SIZES WITHIN AND ACROSS 1408 01:03:14,895 --> 01:03:15,462 STUDIES. 1409 01:03:15,462 --> 01:03:17,264 WE NEED TO █DO A BETTER JOB 1410 01:03:17,264 --> 01:03:19,233 UNDERSTANDING THE RIGHT CARE FOR 1411 01:03:19,233 --> 01:03:20,501 THE RIGHT PATIENT AT THE RIGHT 1412 01:03:20,501 --> 01:03:22,302 TIME AND NEED TO ADAPT CARE 1413 01:03:22,302 --> 01:03:23,971 MODELS TO MEET THE NEEDS OF 1414 01:03:23,971 --> 01:03:25,639 PATIENTS WHO LIVE ALONE OR 1415 01:03:25,639 --> 01:03:29,176 WITHOUT AN ENGAGED CAREGIVER. 1416 01:03:29,176 --> 01:03:31,779 THE CARE MODELS TEND TO HAVE 1417 01:03:31,779 --> 01:03:32,646 MANY COMPONENTS OF CARE JUST 1418 01:03:32,646 --> 01:03:33,914 LIKE GUIDE BUT WE DON'T ALWAYS 1419 01:03:33,914 --> 01:03:35,215 KNOW WHICH ARE THE COMPONENTS 1420 01:03:35,215 --> 01:03:39,319 THAT DRIVE EFFECTIVENESS. 1421 01:03:39,319 --> 01:03:41,355 WE NEED TO ADAPT OUR CARE MODELS 1422 01:03:41,355 --> 01:03:44,124 TO MEET THE NEEDS OF PATIENTS 1423 01:03:44,124 --> 01:03:46,627 DURING VULNERABLE POINTS IN 1424 01:03:46,627 --> 01:03:48,562 THEIR JOURNEY AND CARE TEAMS 1425 01:03:48,562 --> 01:03:51,498 IMPLEMENTING SCIENCE-BASED CARE 1426 01:03:51,498 --> 01:03:53,033 MODEL FACING CHALLENGES 1427 01:03:53,033 --> 01:03:54,735 INFIDELITY AND INTEGRATING THE 1428 01:03:54,735 --> 01:03:56,370 MODELS WITH ROUTINE CARE. 1429 01:03:56,370 --> 01:03:58,205 THIS COULD BE ADDRESSED IN PART 1430 01:03:58,205 --> 01:04:03,777 WITH A.I.-BASED TOOLS. 1431 01:04:03,777 --> 01:04:05,345 SO, THIS IS THE FULL TEXT OF 1432 01:04:05,345 --> 01:04:05,946 THIS RECOMMENDATION. 1433 01:04:05,946 --> 01:04:08,315 WE WANT TO PUSH FORWARD RESEARCH 1434 01:04:08,315 --> 01:04:10,317 THAT ADDRESSES VULNERABLE POINTS 1435 01:04:10,317 --> 01:04:11,351 IN THE CARE JOURNEY. 1436 01:04:11,351 --> 01:04:15,723 WE WANT TO MEET THE NEEDS OF 1437 01:04:15,723 --> 01:04:16,390 INDIVIDUALS IN THE HETEROGENEOUS 1438 01:04:16,390 --> 01:04:17,024 POPULATION INCLUDING PEOPLE WHO 1439 01:04:17,024 --> 01:04:20,994 LIVE ALONE. 1440 01:04:20,994 --> 01:04:22,629 IN COOPERATE DECISION SUPPORT 1441 01:04:22,629 --> 01:04:24,698 TOOLS, GENERATIVE A.I. 1442 01:04:24,698 --> 01:04:25,966 APPROACHES TO DRIVE EFFICIENCIES 1443 01:04:25,966 --> 01:04:27,668 AND ADHERE TO BEST PRACTICES. 1444 01:04:27,668 --> 01:04:28,969 IDENTIFY THE CORE COMPONENTS OF 1445 01:04:28,969 --> 01:04:31,872 CARE THAT DRIVE EFFECTIVENESS 1446 01:04:31,872 --> 01:04:32,673 AND FOR WHOM. 1447 01:04:32,673 --> 01:04:35,275 AND ADVANCE WORK ON THE 1448 01:04:35,275 --> 01:04:37,311 AVAILABILITY OF COMMON DATA 1449 01:04:37,311 --> 01:04:38,679 ELEMENTS TO FACILITATE 1450 01:04:38,679 --> 01:04:40,047 EVALUATION OF REAL-WORLD 1451 01:04:40,047 --> 01:04:40,647 SETTINGS. 1452 01:04:40,647 --> 01:04:49,056 THANK YOU AND NEXT. 1453 01:04:49,056 --> 01:04:51,458 I'D LIKE TO INTRODUCE NOW JULIE 1454 01:04:51,458 --> 01:04:53,360 WOOD WHO WILL SPEAK ON OUR NEXT 1455 01:04:53,360 --> 01:04:59,366 RECOMMENDATION. 1456 01:04:59,366 --> 01:05:01,769 >> JULIE WOOD: THANK YOU FOR 1457 01:05:01,769 --> 01:05:02,836 JOINING US. 1458 01:05:02,836 --> 01:05:05,072 I'M JULIE WOOD A FAMILY 1459 01:05:05,072 --> 01:05:05,739 PHYSICIAN AND JOINING FROM THE 1460 01:05:05,739 --> 01:05:07,608 AMERICAN ACADEMY OF FAMILY 1461 01:05:07,608 --> 01:05:08,909 PHYSICIANS THAT REPRESENTED 1462 01:05:08,909 --> 01:05:10,277 ABOUT 28,000 FAMILY PHYSICIANS 1463 01:05:10,277 --> 01:05:16,683 FROM ACROSS THE UNITED STATES. 1464 01:05:16,683 --> 01:05:20,254 MY -- I'M GOING TO COVER 1465 01:05:20,254 --> 01:05:21,421 PRIORITY 1 A RECOMMENDATION ON 1466 01:05:21,421 --> 01:05:21,688 DIAGNOSIS. 1467 01:05:21,688 --> 01:05:22,422 I DON'T HAVE ANYTHING TO 1468 01:05:22,422 --> 01:05:28,328 DISCLOSE. 1469 01:05:28,328 --> 01:05:31,732 I'M GOING TO READ THIS FOR YOU 1470 01:05:31,732 --> 01:05:32,432 AS WELL. 1471 01:05:32,432 --> 01:05:34,668 OUR RECOMMENDATION ON DIAGNOSIS, 1472 01:05:34,668 --> 01:05:37,638 CONDUCT IMPLEMENTATION AND 1473 01:05:37,638 --> 01:05:38,605 DISSEMINATION RESEARCH ON 1474 01:05:38,605 --> 01:05:40,674 EVIDENCE-BASED INTERVENTIONS TO 1475 01:05:40,674 --> 01:05:41,809 DETECT AND DIAGNOSIS COGNITIVE, 1476 01:05:41,809 --> 01:05:43,911 BEHAVIORAL OR FUNCTIONAL 1477 01:05:43,911 --> 01:05:45,679 IMPAIRMENTS ASSOCIATED WITH 1478 01:05:45,679 --> 01:05:47,181 AD/ADRD, COMMUNICATE RESULTS TO 1479 01:05:47,181 --> 01:05:48,682 PATIENTS AND CARE PARTNERS AND 1480 01:05:48,682 --> 01:05:50,350 LINK THEM TO QUALITY CARE IN 1481 01:05:50,350 --> 01:05:57,791 PRIMARY HEALTH CARE SETTINGS. 1482 01:05:57,791 --> 01:06:00,627 SO ONE OF THE THINGS THAT WE 1483 01:06:00,627 --> 01:06:03,597 WANTED TO EMPHASIZE IS WHY THIS 1484 01:06:03,597 --> 01:06:05,732 IS SO IMPORTANT TO DIAGNOSIS 1485 01:06:05,732 --> 01:06:08,669 MILD COGNITIVE IMPAIRMENT. 1486 01:06:08,669 --> 01:06:12,539 OFTEN THIS CAN DEMONSTRATE THAT 1487 01:06:12,539 --> 01:06:13,473 WE CAN HELP TREAT SOMETHING 1488 01:06:13,473 --> 01:06:15,342 THAT'S REVERSIBLE. 1489 01:06:15,342 --> 01:06:16,510 THIS MAY BE A CONDITION WHERE WE 1490 01:06:16,510 --> 01:06:18,178 TREAT SOMETHING LIKE A MEDICAL 1491 01:06:18,178 --> 01:06:21,181 PROBLEM THAT IS ACTUALLY A 1492 01:06:21,181 --> 01:06:22,783 REVERSIBLE PROBLEM. 1493 01:06:22,783 --> 01:06:25,986 WE CAN ALSO OPTIMIZE MEDICATION. 1494 01:06:25,986 --> 01:06:27,421 THIS CAN HELP INFORM TREATMENT 1495 01:06:27,421 --> 01:06:28,655 DECISIONS FOR OTHER CONDITIONS 1496 01:06:28,655 --> 01:06:31,325 THAT A PERSON MAY HAVE. 1497 01:06:31,325 --> 01:06:33,060 WE ALSO WANT TO HELP CONNECT 1498 01:06:33,060 --> 01:06:34,528 PEOPLE TO OTHER SERVICES AS WELL 1499 01:06:34,528 --> 01:06:36,363 AS THE CAREGIVERS AND THIS IS 1500 01:06:36,363 --> 01:06:37,831 MUCH OF WHAT THE GUIDE MODEL IS 1501 01:06:37,831 --> 01:06:39,900 BASED ON YOU HEARD ABOUT 1502 01:06:39,900 --> 01:06:40,167 EARLIER. 1503 01:06:40,167 --> 01:06:42,035 IT GIVES A PATIENT AND THEIR 1504 01:06:42,035 --> 01:06:43,770 FAMILY THE OPPORTUNITY TO MAKE 1505 01:06:43,770 --> 01:06:46,073 DECISIONS ABOUT PARTICIPATING IN 1506 01:06:46,073 --> 01:06:46,840 CLINICAL TRIALS OR OTHER 1507 01:06:46,840 --> 01:06:47,708 RESEARCH THAT'S AVAILABLE. 1508 01:06:47,708 --> 01:06:49,943 AND A REALLY IMPORTANT ONE IS 1509 01:06:49,943 --> 01:06:50,644 STARTING TO TALK ABOUT QUALITY 1510 01:06:50,644 --> 01:06:51,712 OF LIFE AND GOALS FOR THE 1511 01:06:51,712 --> 01:06:53,180 PATIENT AND THEIR FAMILY. 1512 01:06:53,180 --> 01:06:58,552 AND TALK ABOUT SAFETY ISSUES. 1513 01:06:58,552 --> 01:06:59,553 AND TALK TO THE PATIENT AND 1514 01:06:59,553 --> 01:07:01,488 THEIR FAMILY ABOUT PLANNING 1515 01:07:01,488 --> 01:07:03,757 AHEAD FOR THEIR CARE AND HAVING 1516 01:07:03,757 --> 01:07:04,658 CONVERSATIONS ABOUT WHAT ARE THE 1517 01:07:04,658 --> 01:07:05,459 GOALS. 1518 01:07:05,459 --> 01:07:06,927 IMPORTANTLY, TALKING ESPECIALLY 1519 01:07:06,927 --> 01:07:09,296 NOW AS YOU HEARD EARLIER TALKING 1520 01:07:09,296 --> 01:07:09,796 ABOUT NEW AND EMERGING 1521 01:07:09,796 --> 01:07:19,973 THERAPIES. 1522 01:08:13,527 --> 01:08:15,195 IT'S IMPORTANT TO HAVE METHODS 1523 01:08:15,195 --> 01:08:16,363 IN PLACE TO FIND PEOPLE EARLIER 1524 01:08:16,363 --> 01:08:17,564 TO HELP WITH THE INTERVENTIONS 1525 01:08:17,564 --> 01:08:21,335 THAT ARE SO IMPORTANT. 1526 01:08:21,335 --> 01:08:25,105 THERE'S ALSO DISPARITIES IN 1527 01:08:25,105 --> 01:08:27,040 MEDICALLY UNDER SERVED 1528 01:08:27,040 --> 01:08:28,842 COMMUNITIES AND MINORITIES, 1529 01:08:28,842 --> 01:08:31,478 PEOPLE IN RURAL AREAS LIKE WHERE 1530 01:08:31,478 --> 01:08:36,650 I PRACTICE AND DIFFERENT SOCIAL 1531 01:08:36,650 --> 01:08:38,852 DISADVANTAGES AND WE KNOW THE 1532 01:08:38,852 --> 01:08:39,486 DIFFERENT RESOURCES ON THE SLIDE 1533 01:08:39,486 --> 01:08:49,596 BELOW. 1534 01:08:50,964 --> 01:08:52,666 SO IN PRIMARY CARE THERE'S A LOT 1535 01:08:52,666 --> 01:08:54,568 OF BARRIERS. 1536 01:08:54,568 --> 01:08:55,669 THERE'S A DEFINITE INTEREST 1537 01:08:55,669 --> 01:08:57,004 AMONG PRIMARY CARE PHYSICIAN TO 1538 01:08:57,004 --> 01:09:01,308 DO THIS BUT IT COULD BE A BIT 1539 01:09:01,308 --> 01:09:01,641 OVERWHELMING. 1540 01:09:01,641 --> 01:09:04,578 TIME WAS GIVEN AS THE TOP 1541 01:09:04,578 --> 01:09:04,811 FACTOR. 1542 01:09:04,811 --> 01:09:06,179 THERE WAS AN INTEREST AND A 1543 01:09:06,179 --> 01:09:10,050 KNOWLEDGE OF THE NEED AND AS YOU 1544 01:09:10,050 --> 01:09:11,051 HEARD EARLIER FROM THE PREVIOUS 1545 01:09:11,051 --> 01:09:14,154 PRESENTATION 82% OF PRIMARY CARE 1546 01:09:14,154 --> 01:09:17,391 DOCS CONSIDER THEMSELVES THE 1547 01:09:17,391 --> 01:09:19,726 FRONT LINE. 1548 01:09:19,726 --> 01:09:20,660 HOWEVER, AN ALMOST EQUAL CONCERN 1549 01:09:20,660 --> 01:09:21,428 AND BARRIER. 1550 01:09:21,428 --> 01:09:23,463 ONE THING WE WANTED TO POINT OUT 1551 01:09:23,463 --> 01:09:25,899 IS THERE WAS A STUDY DONE BY THE 1552 01:09:25,899 --> 01:09:27,968 JOURNAL OF INTERNAL MEDICINE, 1553 01:09:27,968 --> 01:09:29,369 GENERAL INTERNAL MEDICINE THAT 1554 01:09:29,369 --> 01:09:33,073 CAME OUT IN 2022 THAT LOOKED AT 1555 01:09:33,073 --> 01:09:36,643 TIME AND THEY ACTUALLY FOUND OUT 1556 01:09:36,643 --> 01:09:38,845 IF PRIMARY DOCS DID EVERYTHING 1557 01:09:38,845 --> 01:09:40,113 RECOMMENDED IT WAS IMPORTANT FOR 1558 01:09:40,113 --> 01:09:42,649 ALL KINDS OF GUIDELINES IT WOULD 1559 01:09:42,649 --> 01:09:44,184 TAKE A PRIMARY CARE PHYSICIAN 1560 01:09:44,184 --> 01:09:45,952 26.7 HOURS A DAY TO DO ALL 1561 01:09:45,952 --> 01:09:46,353 THOSE. 1562 01:09:46,353 --> 01:09:47,788 WE WANT TO DO ALL THOSE AND 1563 01:09:47,788 --> 01:09:49,389 PROVIDE GOOD CARE BUT THE KEY IS 1564 01:09:49,389 --> 01:09:51,158 WE HAVE TO FIND GOOD WAYS TO DO 1565 01:09:51,158 --> 01:09:52,526 THAT AND HAVE THE RIGHT CARE AT 1566 01:09:52,526 --> 01:09:56,663 THE RIGHT TIME SO WE CAN WORK IN 1567 01:09:56,663 --> 01:09:58,098 TEAMS AND A LOT OF OUR 1568 01:09:58,098 --> 01:09:59,466 RECOMMENDATIONS TODAY ARE BASED 1569 01:09:59,466 --> 01:10:01,435 ON THAT. 1570 01:10:01,435 --> 01:10:04,638 WE ALSO FOUND WITH SURVEYS 1571 01:10:04,638 --> 01:10:08,008 INCLUDING ONE FROM MY 1572 01:10:08,008 --> 01:10:09,743 ORGANIZATION AND -- 1573 01:10:09,743 --> 01:10:14,548 >> YOU HAVE A TWO-MINUTE 1574 01:10:14,548 --> 01:10:16,550 WARNING. 1575 01:10:16,550 --> 01:10:19,486 >> JULIE WOOD: THAT GETTING 1576 01:10:19,486 --> 01:10:20,554 CONFIDENCE IN TRAINING IS THE 1577 01:10:20,554 --> 01:10:24,591 MOST IMPORTANT THING TO THEM AND 1578 01:10:24,591 --> 01:10:27,527 REDISCOVERED ORGANIZATIONS 1579 01:10:27,527 --> 01:10:30,263 GETTING INFORMATION ON 1580 01:10:30,263 --> 01:10:33,200 EVIDENCE-BASED CARE WAS KEY. 1581 01:10:33,200 --> 01:10:38,138 WE RECOMMEND TO GO WITH 1582 01:10:38,138 --> 01:10:46,913 COGNITIVE SCREENING. 1583 01:10:46,913 --> 01:10:48,682 THIS IS AN EXAMPLE OF FACTORS 1584 01:10:48,682 --> 01:10:50,517 THAT CAN CONTRIBUTE TO 1585 01:10:50,517 --> 01:10:51,051 RISK-BASED SCREENING AND 1586 01:10:51,051 --> 01:10:52,652 COGNITIVE CARE IN PRIMARY CARE 1587 01:10:52,652 --> 01:10:54,254 CLINICS THAT CAN ALLOW IT TO GO 1588 01:10:54,254 --> 01:10:58,525 MUCH QUICKER. 1589 01:10:58,525 --> 01:11:01,361 THE NEXT SLIDE IS A DIAGRAM THAT 1590 01:11:01,361 --> 01:11:04,664 WAS DONE AT A CONFERENCE OF 1591 01:11:04,664 --> 01:11:07,167 MULTI-DISCIPLINARY SCIENTISTS ON 1592 01:11:07,167 --> 01:11:10,437 HOW THE RISK STRATIFICATION CAN 1593 01:11:10,437 --> 01:11:12,005 OCCUR OFFSITE AND BUILD INTO THE 1594 01:11:12,005 --> 01:11:21,581 WELLNESS VISIT. 1595 01:11:21,581 --> 01:11:28,288 I WANTED TO MENTION IT'S VERY TO 1596 01:11:28,288 --> 01:11:29,723 KNOW THERE'S CLINICAL TRIALS 1597 01:11:29,723 --> 01:11:31,892 ONGOING AND THE MILESTONE 1598 01:11:31,892 --> 01:11:33,560 SHOWING THE PARADIGMS IS VERY 1599 01:11:33,560 --> 01:11:35,729 IMPORTANT AND THERE'S RESEARCH 1600 01:11:35,729 --> 01:11:36,296 ON THE WAY. 1601 01:11:36,296 --> 01:11:41,902 YOU HEARD ABOUT ONE OF THEM. 1602 01:11:41,902 --> 01:11:45,438 I WON'T REITERATE THAT BECAUSE 1603 01:11:45,438 --> 01:11:52,712 WE HAD A GREAT SUMMARY BEFORE. 1604 01:11:52,712 --> 01:11:55,182 YOU SAW THE SLIDE OF SEVERAL 1605 01:11:55,182 --> 01:11:55,448 MENTIONED. 1606 01:11:55,448 --> 01:11:59,152 THESE ARE BEING IMPLEMENTED IN 1607 01:11:59,152 --> 01:12:00,654 PRIMARY CARE SETTINGS FOR EARLY 1608 01:12:00,654 --> 01:12:10,997 DETECTION AND DIAGNOSIS. 1609 01:12:10,997 --> 01:12:13,833 SO, WE WANT TO MAKE SURE WE'RE 1610 01:12:13,833 --> 01:12:16,369 HAVING SETTINGS AND FRAGMENTED 1611 01:12:16,369 --> 01:12:16,970 RESEARCH CONTINUED AND THAT'S 1612 01:12:16,970 --> 01:12:19,105 OUR RECOMMENDATION. 1613 01:12:19,105 --> 01:12:22,809 I WILL LEAVE IT THERE FOR YOU TO 1614 01:12:22,809 --> 01:12:25,845 SEE AND SINCE I'M OUT OF TIME, 1615 01:12:25,845 --> 01:12:26,546 THANK YOU. 1616 01:12:26,546 --> 01:12:28,648 I READ THE BEGINNING. 1617 01:12:28,648 --> 01:12:29,716 THANK YOU FOR YOUR ATTENTION. 1618 01:12:29,716 --> 01:12:36,656 I'LL TURN IT OVER TO DR 1619 01:12:36,656 --> 01:12:38,792 DR. LINGLER. 1620 01:12:38,792 --> 01:12:41,428 >> DR. LINGLER: IT'S AN HONOR TO 1621 01:12:41,428 --> 01:12:44,097 PRESENT ON BEHALF OF OUR WORKING 1622 01:12:44,097 --> 01:12:47,534 GROUP. 1623 01:12:47,534 --> 01:12:53,173 MY DISCLOSURES IS PAID 1624 01:12:53,173 --> 01:12:54,674 COMPENSATION AND WE HAVE 1625 01:12:54,674 --> 01:12:58,011 STRATEGIES TO IMPROVE ACCESS TO 1626 01:12:58,011 --> 01:12:59,679 HIGH QUALITY AD/ADRD CARE 1627 01:12:59,679 --> 01:13:01,948 INCLUDING DIAGNOSTIC EVALUATIONS 1628 01:13:01,948 --> 01:13:04,651 AND BIOMARKER TESTING, 1629 01:13:04,651 --> 01:13:06,119 PHARMACOLOGIC AND 1630 01:13:06,119 --> 01:13:08,655 NON-PHARMACOLOGIC TREATMENTS AND 1631 01:13:08,655 --> 01:13:13,493 PALLIATIVE CARE AND HOSPICE 1632 01:13:13,493 --> 01:13:13,760 CARE. 1633 01:13:13,760 --> 01:13:16,730 RECOGNIZING THE EARLIEST PROCESS 1634 01:13:16,730 --> 01:13:18,431 INCLUDES STRATEGY TO INCREASE BE 1635 01:13:18,431 --> 01:13:20,667 OPPORTUNITIES FOR BRAIN HEALTH 1636 01:13:20,667 --> 01:13:21,167 RESEARCH PARTICIPATION. 1637 01:13:21,167 --> 01:13:21,968 THE ACCESS RECOMMENDATION IS NEW 1638 01:13:21,968 --> 01:13:22,869 THIS YEAR. 1639 01:13:22,869 --> 01:13:25,972 IT'S GROUNDED IN A ROBUST BODY 1640 01:13:25,972 --> 01:13:28,575 OF EVIDENCE SUGGESTING MANY 1641 01:13:28,575 --> 01:13:29,542 BREAKTHROUGHS HIGHLIGHTED 1642 01:13:29,542 --> 01:13:32,545 THROUGH THE INTRODUCTION ARE NOT 1643 01:13:32,545 --> 01:13:35,548 BENEFITING ALL FAMILIES IMPACTED 1644 01:13:35,548 --> 01:13:37,717 BY DEMENTIAS. 1645 01:13:37,717 --> 01:13:38,652 I'LL PROVIDE THE RATIONALE FOR 1646 01:13:38,652 --> 01:13:40,520 THE RECOMMENDATION. 1647 01:13:40,520 --> 01:13:42,889 BEAR IN MIND THE RECOMMENDATION 1648 01:13:42,889 --> 01:13:44,491 IS COMPREHENSIVE IN SCOPE 1649 01:13:44,491 --> 01:13:47,160 SPANNING THE DIAGNOSTIC AND CARE 1650 01:13:47,160 --> 01:13:50,196 CONTINUUM SO VIEW THIS AS A HIGH 1651 01:13:50,196 --> 01:13:54,534 LEVEL OVERVIEW FOR CHALLENGES TO 1652 01:13:54,534 --> 01:13:58,171 HIGH QUALITY CARE ALONG A 1653 01:13:58,171 --> 01:14:01,741 PERSON'S DEMENTIA TRAJECTORY. 1654 01:14:01,741 --> 01:14:03,710 A RECENT SYNTHESIS OF PUBLISHED 1655 01:14:03,710 --> 01:14:06,946 LITERATURE SHOWS A PATTERN THAT 1656 01:14:06,946 --> 01:14:14,387 THOSE WHO ARE FROM GROUPS NOBODY 1657 01:14:14,387 --> 01:14:15,922 TO EXPERIENCE MORE AD/ADRD TURN 1658 01:14:15,922 --> 01:14:17,357 OUT TO BE THE LEAST LIKELY TO 1659 01:14:17,357 --> 01:14:20,760 RECEIVE TIMELY AND ACCURATE 1660 01:14:20,760 --> 01:14:22,796 DIAGNOSIS AND RECEIVE TREATMENT 1661 01:14:22,796 --> 01:14:24,664 WITH INHIBITERS AS THE DISEASE 1662 01:14:24,664 --> 01:14:29,035 PROGRESSES THE PATTERNS OF LOWER 1663 01:14:29,035 --> 01:14:32,405 QUALITY CARE PERSIST OFTEN IN 1664 01:14:32,405 --> 01:14:34,941 THE FORMS OF CARE. 1665 01:14:34,941 --> 01:14:38,178 LET'S TAKE A CLOSER LOOK AT THE 1666 01:14:38,178 --> 01:14:41,981 PATTERNS BEGINNING WITH 1667 01:14:41,981 --> 01:14:42,716 DIAGNOSTICS. 1668 01:14:42,716 --> 01:14:44,117 YOU HEARD THE DIAGNOSES OF 1669 01:14:44,117 --> 01:14:44,351 AD/ADRD. 1670 01:14:44,351 --> 01:14:46,920 ON THE PANEL TO YOUR LEFT WE 1671 01:14:46,920 --> 01:14:48,855 HIGHLIGHT CLAIMS DATA 1672 01:14:48,855 --> 01:14:52,659 DEMONSTRATING MISSES AND DEVIL 1673 01:14:52,659 --> 01:14:58,198 RAYS IN DEMENTIA DIAGNOSES ARE 1674 01:14:58,198 --> 01:15:00,967 PROGRAMATIC WITH DELAYS FOR 1675 01:15:00,967 --> 01:15:02,836 HISPANIC INDIVIDUALS AND LONGER 1676 01:15:02,836 --> 01:15:05,705 FOR THOSE IN THE HISPANIC AND 1677 01:15:05,705 --> 01:15:07,540 NON-HISPANIC GROUPS. 1678 01:15:07,540 --> 01:15:09,275 A STUDY DOCUMENTED HIGHER 1679 01:15:09,275 --> 01:15:11,678 PREVALENCE OF AD/ADRD AMONG 1680 01:15:11,678 --> 01:15:15,115 RURAL POPULATIONS BUT NOTED 1681 01:15:15,115 --> 01:15:17,584 CONSISTENT DELAYED DIAGNOSIS AND 1682 01:15:17,584 --> 01:15:20,153 LACK OF ACCESS TO PROFESSIONALS. 1683 01:15:20,153 --> 01:15:23,690 AND AS WAS ALLUDED TO, THE 1684 01:15:23,690 --> 01:15:24,791 IMPLICATION MATTER TODAY BUT ARE 1685 01:15:24,791 --> 01:15:27,494 SALIENT WHEN WE CONSIDER THE 1686 01:15:27,494 --> 01:15:28,395 ELIGIBILITY WINDOW FOR NOVEL AND 1687 01:15:28,395 --> 01:15:31,931 EMERGING THERAPEUTICS. 1688 01:15:31,931 --> 01:15:35,368 AS THE FIELD MOVES FORWARD TO AN 1689 01:15:35,368 --> 01:15:37,771 ERA OF BIOMARKER INFORMED 1690 01:15:37,771 --> 01:15:38,872 DIAGNOSIS THERE'S EARLY EVIDENCE 1691 01:15:38,872 --> 01:15:41,007 IN THE ABSENCE OF THE DEDICATED 1692 01:15:41,007 --> 01:15:43,643 EFFORT THOSE AT HIGHEST RISK 1693 01:15:43,643 --> 01:15:45,545 FROM AD/ADRD MAY BE LESS LIKELY 1694 01:15:45,545 --> 01:15:47,580 TO UNDER GO BIOMARKER TESTS. 1695 01:15:47,580 --> 01:15:51,518 HERE THE STUDY SHOWS ACCESS TO 1696 01:15:51,518 --> 01:15:54,187 AMYLOID PET WAS UNEVEN ACROSS 1697 01:15:54,187 --> 01:15:55,822 RACIAL AND ETHNIC GROUPS AND IF 1698 01:15:55,822 --> 01:15:57,123 YOU PAN TO THE RIGHT, A REVIEW 1699 01:15:57,123 --> 01:15:59,325 OF STUDIES ON THE TURN OF 1700 01:15:59,325 --> 01:16:02,195 BIOMARKER TESTS RESULTS TO 1701 01:16:02,195 --> 01:16:07,467 PATIENTS AND FAMILIES SHOWS A 1702 01:16:07,467 --> 01:16:08,701 NEED OF PARTICIPANTS FROM BLACK 1703 01:16:08,701 --> 01:16:13,139 AND BROWN COMMUNITIES SO IT 1704 01:16:13,139 --> 01:16:15,008 INFORMS BEST PRACTICES FOR THE 1705 01:16:15,008 --> 01:16:16,943 RESPONSIBLE RETURN OF THE 1706 01:16:16,943 --> 01:16:24,050 SENSITIVE INFORMATION. 1707 01:16:24,050 --> 01:16:28,254 IN TERMS OF ACCESS TO PHARMACO 1708 01:16:28,254 --> 01:16:30,423 THERAPIES IT'S ESSENTIAL TO NOTE 1709 01:16:30,423 --> 01:16:32,659 CARE ENCOMPASSES NOT ONLY THE 1710 01:16:32,659 --> 01:16:36,663 TIMELY INITIATION OF FDA 1711 01:16:36,663 --> 01:16:40,500 APPROACHED ANTI-DEMENTIA 1712 01:16:40,500 --> 01:16:43,069 MEDICATIONS BUT EXTENDS TO 1713 01:16:43,069 --> 01:16:44,537 INAPPROPRIATE PRESCRIBING FOR 1714 01:16:44,537 --> 01:16:48,842 MOOD AND BEHAVIORAL SYMPTOMS AND 1715 01:16:48,842 --> 01:16:49,509 COMORBID SYMPTOMS. 1716 01:16:49,509 --> 01:16:50,743 AS HIGHLIGHTED INDIVIDUALS FROM 1717 01:16:50,743 --> 01:16:52,645 RURAL COMMUNITIES ARE 1718 01:16:52,645 --> 01:16:53,680 PARTICULARLY IMPACTED BY THE 1719 01:16:53,680 --> 01:17:00,253 LATTER. 1720 01:17:00,253 --> 01:17:02,021 THE LAST EXAMPLES IDENTIFY 1721 01:17:02,021 --> 01:17:04,057 STRATEGY TO IMPROIF ACCESS TO 1722 01:17:04,057 --> 01:17:05,391 HIGH QUALITY CARE IN THE FINAL 1723 01:17:05,391 --> 01:17:06,593 STAGES OF AD/ADRD. 1724 01:17:06,593 --> 01:17:08,094 AS THE TEXT ON THE LEFT 1725 01:17:08,094 --> 01:17:10,263 HIGHLIGHTS MEDICARE 1726 01:17:10,263 --> 01:17:11,698 BENEFICIARIES IDENTIFYING AS 1727 01:17:11,698 --> 01:17:13,466 BLACK AND/OR HISPANIC RECEIVE 1728 01:17:13,466 --> 01:17:14,534 MORE BURDENSOME AND COSTLY CARE 1729 01:17:14,534 --> 01:17:15,635 AT THE END OF LIFE. 1730 01:17:15,635 --> 01:17:18,104 SIMILAR TO OTHER ASPECTS OF CARE 1731 01:17:18,104 --> 01:17:20,073 WE SEE OPPORTUNITIES TO IMPROVE 1732 01:17:20,073 --> 01:17:23,543 ACCESS TO HIGH QUALITY CARE FOR 1733 01:17:23,543 --> 01:17:26,479 LATER STAGE INDIVIDUALS WITH THE 1734 01:17:26,479 --> 01:17:27,347 PUBLICATION HIGHLIGHTING LOWER 1735 01:17:27,347 --> 01:17:32,652 RATES OF DOCUMENTS GOALS OF CARE 1736 01:17:32,652 --> 01:17:35,121 INCLUDING DEMENTIA PATIENTS 1737 01:17:35,121 --> 01:17:35,855 RECEIVING HOSPICE. 1738 01:17:35,855 --> 01:17:40,093 IN SUM, ADVANCES IN AD/ADRD CARE 1739 01:17:40,093 --> 01:17:42,228 FOR DIAGNOSTIC PRECISION TO END 1740 01:17:42,228 --> 01:17:44,197 OF LIFE CARE HAVE NOT BENEFITTED 1741 01:17:44,197 --> 01:17:46,266 ALL WHO ARE IMPACTED BY THE 1742 01:17:46,266 --> 01:17:47,700 CONDITIONS IT'S CRITICAL TO 1743 01:17:47,700 --> 01:17:50,436 ACCELERATING THE TRANSITION OF 1744 01:17:50,436 --> 01:17:53,673 EFFECTIVE DIAGNOSIS OF CARE AND 1745 01:17:53,673 --> 01:17:57,010 REACHING REACH THOSE WITH WHO 1746 01:17:57,010 --> 01:17:57,810 EXPERIENCE THE GREATEST BURDEN 1747 01:17:57,810 --> 01:18:05,418 OF AD/ADRD. 1748 01:18:05,418 --> 01:18:07,353 THE WORK GROUP RECOMMEND TO 1749 01:18:07,353 --> 01:18:08,488 IDENTIFY AND NAVIGATE PEOPLE TO 1750 01:18:08,488 --> 01:18:11,124 QUALITY CARE WITH A FOCUS ON 1751 01:18:11,124 --> 01:18:12,392 POPULATIONS EXPERIENCING HEALTH 1752 01:18:12,392 --> 01:18:12,692 DISPARITIES. 1753 01:18:12,692 --> 01:18:14,460 THESE INTERVENTIONS SHOULD TAKE 1754 01:18:14,460 --> 01:18:16,663 A SYSTEMS APPROACH AND 1755 01:18:16,663 --> 01:18:20,033 APPROACHES SHOULD INCORPORATE 1756 01:18:20,033 --> 01:18:20,700 PROVIDER EDUCATION AND TRAINING 1757 01:18:20,700 --> 01:18:22,602 AND LINK PATIENTS WITH THE CARE 1758 01:18:22,602 --> 01:18:24,637 THAT'S RIGHT FOR THEM. 1759 01:18:24,637 --> 01:18:27,206 AND LASTLY TO EXAMINE ETHICAL 1760 01:18:27,206 --> 01:18:31,978 ISSUES AND EVALUATE PATHWAYS IN 1761 01:18:31,978 --> 01:18:33,179 EVERYDAY CLINICAL SETTINGS AND 1762 01:18:33,179 --> 01:18:34,514 SHOULD INCLUDE HELPING PROVIDERS 1763 01:18:34,514 --> 01:18:36,049 TO INTERPRET AND COMMUNICATE THE 1764 01:18:36,049 --> 01:18:37,951 RESULTS IN A WAY THAT OPTIMIZE 1765 01:18:37,951 --> 01:18:40,520 AGENCY AND REDUCES POTENTIAL 1766 01:18:40,520 --> 01:18:40,720 HARM. 1767 01:18:40,720 --> 01:18:42,622 WITH THAT I'LL TURN IT OVER TO 1768 01:18:42,622 --> 01:18:47,193 DR. SNYDER AND LOOK FORWARD TO 1769 01:18:47,193 --> 01:18:48,094 THE DISCUSSION. 1770 01:18:48,094 --> 01:18:50,997 >> DR. SNYDER: GOOD MORNING, 1771 01:18:50,997 --> 01:18:51,264 EVERYBODY. 1772 01:18:51,264 --> 01:18:52,665 I'M TRYING TO TURN ON MY CAMERA 1773 01:18:52,665 --> 01:18:54,634 AND IT'S NOT LETTING ME SO I'LL 1774 01:18:54,634 --> 01:18:55,635 KEEP GOING AND HOPEFULLY 1775 01:18:55,635 --> 01:18:56,402 SOMEBODY CAN FIGURE THAT OUT. 1776 01:18:56,402 --> 01:18:58,404 IT'S A PLEASURE TO PRESENT ON 1777 01:18:58,404 --> 01:19:00,907 BEHALF OF THE WORK GROUP AS WE 1778 01:19:00,907 --> 01:19:04,944 THINK ABOUT THE FOURTH 1779 01:19:04,944 --> 01:19:13,286 RECOMMENDATION. 1780 01:19:13,286 --> 01:19:17,957 AND THESE ARE MY DISCLOSURES. 1781 01:19:17,957 --> 01:19:22,729 AS WE GET TO BACK TO MIXED 1782 01:19:22,729 --> 01:19:24,263 ETIOLOGY DEMENTIA THE PRIMARY 1783 01:19:24,263 --> 01:19:25,498 AND SECONDARY PREVENTION IT'S 1784 01:19:25,498 --> 01:19:27,934 ABOUT THE PREVENTION OF 1785 01:19:27,934 --> 01:19:28,968 COGNITIVE DECLINE OR THE 1786 01:19:28,968 --> 01:19:31,504 CONTINUED DECLINE OF AN 1787 01:19:31,504 --> 01:19:32,372 INDIVIDUAL ONCE THEY'RE 1788 01:19:32,372 --> 01:19:35,708 EXPERIENCING COGNITIVE CHANGES 1789 01:19:35,708 --> 01:19:39,646 FOR THEMSELVES. 1790 01:19:39,646 --> 01:19:40,713 IN THINKING ABOUT PREVENTION, 1791 01:19:40,713 --> 01:19:43,950 THIS GETS YOU TO OUR NEXT SLIDE 1792 01:19:43,950 --> 01:19:46,319 RECOMMENDATION WHICH IS TO 1793 01:19:46,319 --> 01:19:47,453 EVALUATE THE IMPLEMENTATION 1794 01:19:47,453 --> 01:19:48,921 EFFECTIVENESS OF INTERVENTIONS 1795 01:19:48,921 --> 01:19:50,690 THAT MITIGATE THE RISK OF 1796 01:19:50,690 --> 01:19:52,025 COGNITIVE DECLINE IN PRIMARY 1797 01:19:52,025 --> 01:19:53,359 CARE AND COMMUNITY SETTINGS. 1798 01:19:53,359 --> 01:19:56,629 THE IDEA OF ACCESS WITH A STRONG 1799 01:19:56,629 --> 01:19:59,265 FOCUS ON POPULATIONS 1800 01:19:59,265 --> 01:20:01,567 EXPERIENCING DISPROPORTIONATE 1801 01:20:01,567 --> 01:20:02,735 AD/ADRD BURDEN. 1802 01:20:02,735 --> 01:20:04,337 SO THE WORK GROUP TALKED ABOUT 1803 01:20:04,337 --> 01:20:07,640 THE POTENTIAL AND EXAMPLES OF 1804 01:20:07,640 --> 01:20:08,975 HOW IN PARTICULAR PRIMARY CARE 1805 01:20:08,975 --> 01:20:09,676 COULD BE IMPLEMENTED. 1806 01:20:09,676 --> 01:20:11,310 THE IDEA AS WE THINK ABOUT THE 1807 01:20:11,310 --> 01:20:13,112 NEED FOR RESEARCH THAT FOCUSES 1808 01:20:13,112 --> 01:20:16,115 ON IMPLEMENTATION, STRATEGIES, 1809 01:20:16,115 --> 01:20:17,517 PERSONALIZED INTERVENTIONS BASED 1810 01:20:17,517 --> 01:20:19,819 ON THE PATIENT'S RISK AND CAN BE 1811 01:20:19,819 --> 01:20:20,820 DELIVERED WITHIN PRIMARY CARE 1812 01:20:20,820 --> 01:20:21,087 COMMUNITY. 1813 01:20:21,087 --> 01:20:23,456 WHAT YOU SEE HERE IS AN EXAMPLE 1814 01:20:23,456 --> 01:20:25,925 THAT CAME FROM DR. WOOD WHO 1815 01:20:25,925 --> 01:20:28,628 PREVIOUSLY SPOKE FROM THE AAFP 1816 01:20:28,628 --> 01:20:31,097 THINKING ABOUT ALCOHOL USE AND 1817 01:20:31,097 --> 01:20:32,832 SCREENING AND CESSATION PROGRAMS 1818 01:20:32,832 --> 01:20:34,667 DELIVERED IN PRIMARY CARE. 1819 01:20:34,667 --> 01:20:36,903 IN USING A SIMPLE BASIC 1820 01:20:36,903 --> 01:20:37,503 SCREENING TOOL DELIVERED 1821 01:20:37,503 --> 01:20:39,072 THROUGHOUT PRIMARY CARE, YOU CAN 1822 01:20:39,072 --> 01:20:42,041 SEE A SIGNIFICANT IMPACT ON BOTH 1823 01:20:42,041 --> 01:20:43,409 THE CONVERSATION HAPPENING IN 1824 01:20:43,409 --> 01:20:44,644 PRIMARY CARE, AWARENESS OF THE 1825 01:20:44,644 --> 01:20:46,813 THIS AS A POTENTIAL ISSUE AND A 1826 01:20:46,813 --> 01:20:49,248 CHANGE IN BEHAVIOR. 1827 01:20:49,248 --> 01:20:50,450 AGAIN, REALLY LEADING TO IF WE 1828 01:20:50,450 --> 01:20:52,218 CAN HAVE THE KINDS OF 1829 01:20:52,218 --> 01:20:53,986 CONVERSATIONS AS IT APPLIES TO 1830 01:20:53,986 --> 01:20:57,123 COGNITIVE DECLINE AND WE CAN 1831 01:20:57,123 --> 01:20:59,559 IDENTIFY THE PRACTICES OR 1832 01:20:59,559 --> 01:21:00,326 INTERVENTIONS FOR DELAYING OR 1833 01:21:00,326 --> 01:21:03,463 SLOWING AN INDIVIDUAL'S RISK OF 1834 01:21:03,463 --> 01:21:06,966 COGNITIVE DECLINE, THEN THIS MAY 1835 01:21:06,966 --> 01:21:08,601 ALLOW US TO MOVE FORWARD AND 1836 01:21:08,601 --> 01:21:11,337 THINKING OF THE IDEA OF PRIMARY 1837 01:21:11,337 --> 01:21:14,507 OR SECONDARY PREVENTION IN THE 1838 01:21:14,507 --> 01:21:15,041 PRIMARY CARE OR IN THE 1839 01:21:15,041 --> 01:21:21,481 COMMUNITY. 1840 01:21:21,481 --> 01:21:23,649 SO WE LOOK AT PHYSICIANS OR 1841 01:21:23,649 --> 01:21:25,685 PRIMARY CARE PHYSICIANS, ONE OF 1842 01:21:25,685 --> 01:21:29,288 THE THINGS WE HEAR AND THIS CAM 1843 01:21:29,288 --> 01:21:30,690 CAME FROM THE ALZHEIMER'S 1844 01:21:30,690 --> 01:21:33,693 ASSOCIATION S AND FIGURES IN 1845 01:21:33,693 --> 01:21:38,664 2020, 71% PHYSICIANS SAY THEY'RE 1846 01:21:38,664 --> 01:21:40,133 ASKED ONCE A WEEK ABOUT DEMENTIA 1847 01:21:40,133 --> 01:21:42,635 AND IN THINKING ABOUT TOOLS AND 1848 01:21:42,635 --> 01:21:44,537 IDENTIFYING WHERE AND WHEN WE 1849 01:21:44,537 --> 01:21:45,938 MAY BE ABLE TO INTERVENE WE NEED 1850 01:21:45,938 --> 01:21:48,841 TO THINK ABOUT PREPARING OR 1851 01:21:48,841 --> 01:21:49,976 SUPPORTING THESE CONVERSATIONS 1852 01:21:49,976 --> 01:21:52,779 WITH INFORMATION, ACCURATE 1853 01:21:52,779 --> 01:21:55,548 INFORMATION AND GOING INTO THE 1854 01:21:55,548 --> 01:21:56,616 PRIOR THREE RECOMMENDATIONS THAT 1855 01:21:56,616 --> 01:21:58,017 WE'VE HEARD ABOUT IN THINKING 1856 01:21:58,017 --> 01:21:59,786 ABOUT TREATMENT AND THINKING 1857 01:21:59,786 --> 01:22:02,388 ABOUT DETECTION AND DIAGNOSIS IN 1858 01:22:02,388 --> 01:22:05,691 THE FACTS AND FIGURES REPORT 1859 01:22:05,691 --> 01:22:07,493 PUBLISHED TODAY, 68% OF 1860 01:22:07,493 --> 01:22:08,427 INDIVIDUALS TALK ABOUT THEIR 1861 01:22:08,427 --> 01:22:09,829 DESIRE TO HAVE THIS INFORMATION 1862 01:22:09,829 --> 01:22:12,632 IN THINKING ABOUT MAKING 1863 01:22:12,632 --> 01:22:16,135 BEHAVIORAL CHANGES. 1864 01:22:16,135 --> 01:22:19,172 85% THAT OF INDIVIDUALS FIRST 1865 01:22:19,172 --> 01:22:20,973 DIAGNOSED BY NON-DEMENTIA 1866 01:22:20,973 --> 01:22:23,776 SPECIAL 1867 01:22:23,776 --> 01:22:28,648 >> USISTS AND THEY THE 1868 01:22:28,648 --> 01:22:32,351 INITIAL DEMENTIA DIAGNOSIS. 1869 01:22:32,351 --> 01:22:36,522 85% OF PERSONS DIAGNOSED WERE 1870 01:22:36,522 --> 01:22:39,926 WERE DIAGNOSED BY A NON-DEMENTIA 1871 01:22:39,926 --> 01:22:41,828 SPECIALIST AND EVEN AFTER FIVE 1872 01:22:41,828 --> 01:22:45,331 YEARS AROUND 23.5% OF 1873 01:22:45,331 --> 01:22:50,736 BENEFICIARIES HAD A DIAGNOSIS OF 1874 01:22:50,736 --> 01:22:54,340 AN UNSPECIFIED DEMENTIA AND 1875 01:22:54,340 --> 01:22:56,642 LOWER WITH THOSE WHO RECEIVED 1876 01:22:56,642 --> 01:22:59,612 DEMENTIA SPECIALIST HEALTH CARE 1877 01:22:59,612 --> 01:23:02,515 AND OVER FIVE YEARS LESS THAN 1878 01:23:02,515 --> 01:23:04,650 HALF OF ALL PERSONS WITH 1879 01:23:04,650 --> 01:23:07,653 DEMENTIA RECEIVED AN AD 1880 01:23:07,653 --> 01:23:07,920 DIAGNOSIS. 1881 01:23:07,920 --> 01:23:11,791 AGAIN, IDENTIFYING THAT THROUGH 1882 01:23:11,791 --> 01:23:13,893 PRIMARY CARE AND THERE'S A PATH 1883 01:23:13,893 --> 01:23:15,294 IN THINKING ABOUT PRIMARY AND 1884 01:23:15,294 --> 01:23:18,831 SECONDARY PREVENTION. 1885 01:23:18,831 --> 01:23:20,533 DR. POSSIN TALKED ABOUT THE 1886 01:23:20,533 --> 01:23:21,434 LANCET COMMISSION REPORT IN 1887 01:23:21,434 --> 01:23:23,069 THINKING ABOUT THE DEMENTIA RISK 1888 01:23:23,069 --> 01:23:26,839 AS A CONSOLATION OF ACCUMULATORS 1889 01:23:26,839 --> 01:23:28,641 ACROSS A PERSON'S LIFE AND BY 1890 01:23:28,641 --> 01:23:29,809 UNDERSTANDING THAT THROUGH THE 1891 01:23:29,809 --> 01:23:30,910 POTENTIAL CONTRIBUTORS TO A 1892 01:23:30,910 --> 01:23:34,747 PERSON'S RISK, THIS CAN AID IN 1893 01:23:34,747 --> 01:23:35,781 THE CONVERSATION WITH THE HEALTH 1894 01:23:35,781 --> 01:23:38,017 CARE PROVIDER. 1895 01:23:38,017 --> 01:23:40,553 AND AS WE THINK OF BUILDING OUT 1896 01:23:40,553 --> 01:23:41,487 THE CONVERSATIONS AND TOOLS AND 1897 01:23:41,487 --> 01:23:44,557 TESTS AND STUDIES THAT CAN ALLOW 1898 01:23:44,557 --> 01:23:45,558 US TO HAVE THE INFORMATION, 1899 01:23:45,558 --> 01:23:47,793 THERE'S A NEED FOR US TO 1900 01:23:47,793 --> 01:23:48,828 TRANSLATE THIS TYPE OF 1901 01:23:48,828 --> 01:23:50,630 INFORMATION TO TOOLS THAT WILL 1902 01:23:50,630 --> 01:23:52,598 IDENTIFY THOSE MOST AT RISK FOR 1903 01:23:52,598 --> 01:23:55,434 TE DISEASE OR MOST AT RISK FOR 1904 01:23:55,434 --> 01:23:56,836 COGNITIVE DECLINE IN A SCALABLE 1905 01:23:56,836 --> 01:23:58,104 ACCURATE WAY. 1906 01:23:58,104 --> 01:23:58,604 >> TWO-MINUTE WARNING. 1907 01:23:58,604 --> 01:24:04,010 >> THANK YOU. 1908 01:24:04,010 --> 01:24:05,077 THERE'S A RESEARCH IN THINKING 1909 01:24:05,077 --> 01:24:06,078 ABOUT DETECTION AND EARLY 1910 01:24:06,078 --> 01:24:10,049 DETECTION IN SOME OF THESE 1911 01:24:10,049 --> 01:24:10,316 EXAMPLES. 1912 01:24:10,316 --> 01:24:13,185 THESE ARE HIGH-LEVEL EXAMPLES. 1913 01:24:13,185 --> 01:24:16,656 WE HEARD A LITTLE BIT MORE ABOUT 1914 01:24:16,656 --> 01:24:19,725 THINKING ABOUT TAX AD AS 1915 01:24:19,725 --> 01:24:21,427 EXAMPLES IN HOW TO DETECT THE 1916 01:24:21,427 --> 01:24:22,028 EARLIEST CHANGES. 1917 01:24:22,028 --> 01:24:24,130 WHEN WE LOOK AT THIS IN THINKING 1918 01:24:24,130 --> 01:24:25,564 ABOUT THERE'S A NUMBER OF 1919 01:24:25,564 --> 01:24:28,634 STUDIES THAT HAVE BEEN DONE IN 1920 01:24:28,634 --> 01:24:30,603 DELIVERY OF SPECIFIC 1921 01:24:30,603 --> 01:24:31,771 INTERVENTIONS WHETHER IT BE 1922 01:24:31,771 --> 01:24:33,105 LOOKING AT EXERCISE IN A 1923 01:24:33,105 --> 01:24:35,775 POPULATION OF PEOPLE THAT MAY BE 1924 01:24:35,775 --> 01:24:36,542 EXPERIENCING MILD COGNITIVE 1925 01:24:36,542 --> 01:24:38,678 IMPAIRMENT OR COGNITIVE TRAINING 1926 01:24:38,678 --> 01:24:44,583 IN INDIVIDUALS ACROSS THE BOARD. 1927 01:24:44,583 --> 01:24:46,185 OR LOOKING AT THINGS TRYING TO 1928 01:24:46,185 --> 01:24:47,453 UNDERSTAND THE UNDERLYING 1929 01:24:47,453 --> 01:24:49,355 BIOLOGY IN AN INDIVIDUAL SO WE 1930 01:24:49,355 --> 01:24:52,525 CAN EXPAND OUT THE TYPES OF 1931 01:24:52,525 --> 01:24:52,992 INTERVENTIONS IN THE 1932 01:24:52,992 --> 01:24:58,998 PERSONALIZED APPROACH. 1933 01:24:58,998 --> 01:25:01,767 OR LOOKING AT MULTIMODAL 1934 01:25:01,767 --> 01:25:08,641 INTERVENTIONS LOOKING AT 1935 01:25:08,641 --> 01:25:14,580 MULTIPLE RISK REDUCTION 1936 01:25:14,580 --> 01:25:15,715 STRATEGIES AND THEY'RE TIED INTO 1937 01:25:15,715 --> 01:25:17,783 RESEARCH EFFORTS IN THINK ABOUT 1938 01:25:17,783 --> 01:25:18,884 DISCOVERY VALIDATION AND 1939 01:25:18,884 --> 01:25:20,753 IMPLEMENTATION ACROSS ALL THE 1940 01:25:20,753 --> 01:25:24,190 SPECTRUMS OF DISCOVERY AND 1941 01:25:24,190 --> 01:25:25,858 INTERVENTION IN CLINICAL CARE 1942 01:25:25,858 --> 01:25:27,093 THAT CAN BE DELIVERED THROUGH 1943 01:25:27,093 --> 01:25:28,494 PRIMARY CARE. 1944 01:25:28,494 --> 01:25:30,896 AND SO THINKING ABOUT THE 1945 01:25:30,896 --> 01:25:32,298 SPECIFIC RECOMMENDATIONS OF OUR 1946 01:25:32,298 --> 01:25:34,433 WORK GROUP AND EVALUATING THE 1947 01:25:34,433 --> 01:25:35,768 IMPLEMENTATION AND EFFECTIVENESS 1948 01:25:35,768 --> 01:25:38,004 OF INTERVENTIONS THAT PROMOTE 1949 01:25:38,004 --> 01:25:39,705 BRAIN HEALTH AND MITIGATE THE 1950 01:25:39,705 --> 01:25:41,507 RISK OF PRIMARY CARE SETTINGS 1951 01:25:41,507 --> 01:25:45,311 WITH A STRONG FOCUS ON 1952 01:25:45,311 --> 01:25:47,680 POPULATIONS EXPERIENCING 1953 01:25:47,680 --> 01:25:50,549 DISPROPORTIONATE AD/ADRD BURDEN 1954 01:25:50,549 --> 01:25:52,318 AND TOOLS TO IDENTIFY HIGH RISK 1955 01:25:52,318 --> 01:25:53,652 INDIVIDUALS AND THINKING OF 1956 01:25:53,652 --> 01:25:55,821 PRIMARY AND SECONDARY 1957 01:25:55,821 --> 01:25:56,922 INTERVENTIONS THAT ARE LOOKING 1958 01:25:56,922 --> 01:25:58,824 AT THOSE DIFFERENT FACTORS, 1959 01:25:58,824 --> 01:26:01,227 THINKING ABOUT PROMOTING BRAIN 1960 01:26:01,227 --> 01:26:02,028 HEALTH, REDUCING RISK OF 1961 01:26:02,028 --> 01:26:03,629 COGNITIVE DECLINE AND 1962 01:26:03,629 --> 01:26:05,698 INTERVENTIONS THAT MAY INCLUDE 1963 01:26:05,698 --> 01:26:06,866 GUIDANCE ON PERSONALIZED 1964 01:26:06,866 --> 01:26:08,701 INTERVENTION STRATEGIES BASED ON 1965 01:26:08,701 --> 01:26:12,505 A PATIENT'S RISK PROFILE. 1966 01:26:12,505 --> 01:26:14,707 SO THIS BRINGS US TO THE SECTION 1967 01:26:14,707 --> 01:26:15,808 CLOSE WHERE WE'VE GONE THROUGH 1968 01:26:15,808 --> 01:26:17,576 THE FOUR RECOMMENDATIONS THAT 1969 01:26:17,576 --> 01:26:18,511 YOU SEE LISTED HERE. 1970 01:26:18,511 --> 01:26:20,646 WHETHER WE'RE THINKING ABOUT 1971 01:26:20,646 --> 01:26:23,816 THAT ENTIRE SPECTRUM OF 1972 01:26:23,816 --> 01:26:25,951 IMPLEMENTATION AND DISSEMINATION 1973 01:26:25,951 --> 01:26:28,454 RESEARCH ON EVIDENCE-BASED 1974 01:26:28,454 --> 01:26:29,789 INTERVENTIONS TO DETECT AND 1975 01:26:29,789 --> 01:26:31,791 DIAGNOSIS COGNITIVE IMPAIRMENT 1976 01:26:31,791 --> 01:26:33,559 AND THINKING ABOUT EVALUATION 1977 01:26:33,559 --> 01:26:35,561 STRATEGIES TO IMPROVE ACCESS TO 1978 01:26:35,561 --> 01:26:37,763 CARE PATIENTS AND PARTNERS TO 1979 01:26:37,763 --> 01:26:38,731 QUALITY CARE. 1980 01:26:38,731 --> 01:26:41,333 THINKING OF CONDUCTING RESEARCH 1981 01:26:41,333 --> 01:26:43,436 FOR THE ADVOCACY AND 1982 01:26:43,436 --> 01:26:44,103 EFFECTIVENESS OF EVIDENCE-BASED 1983 01:26:44,103 --> 01:26:45,071 RESEARCH AND THINKING ABOUT THE 1984 01:26:45,071 --> 01:26:46,472 OPPORTUNITY FOR PRIMARY AND 1985 01:26:46,472 --> 01:26:47,773 SECONDARY PREVENTION AS WE GO 1986 01:26:47,773 --> 01:26:48,641 FORWARD. 1987 01:26:48,641 --> 01:26:50,009 SO THANK YOU VERY MUCH AND I'LL 1988 01:26:50,009 --> 01:26:52,645 TURN IT BACK TO THE SESSION 1989 01:26:52,645 --> 01:26:53,579 CHAIR. 1990 01:26:53,579 --> 01:26:54,113 >> THANK YOU. 1991 01:26:54,113 --> 01:26:56,082 I WANT TO THANK THE PRESENTERS. 1992 01:26:56,082 --> 01:26:59,418 I ALSO WANT TO THANK ALL OF THE 1993 01:26:59,418 --> 01:27:02,922 COMMITTEE MEMBERS THAT WORKED 1994 01:27:02,922 --> 01:27:04,356 TOGETHER FOR THE RECOMMENDATIONS 1995 01:27:04,356 --> 01:27:05,558 AND INVITE THEM ALL TO TURN ON 1996 01:27:05,558 --> 01:27:06,992 THEIR CAMERAS THEY'RE ABLE TO 1997 01:27:06,992 --> 01:27:08,661 JOIN US TODAY. 1998 01:27:08,661 --> 01:27:13,165 WE ARE VERY EAGER TO HEAR 1999 01:27:13,165 --> 01:27:14,867 COMMENT. 2000 01:27:14,867 --> 01:27:17,069 SO, I THINK YOU CAN USE THE 2001 01:27:17,069 --> 01:27:19,171 RAISE HAND FEATURE IF YOU'D LIKE 2002 01:27:19,171 --> 01:27:22,308 TO SHARE A COMMENT OR QUESTION 2003 01:27:22,308 --> 01:27:22,808 FOR THE PANELISTS. 2004 01:27:22,808 --> 01:27:26,979 I SEE THE FIRST HAND IS RAISED. 2005 01:27:26,979 --> 01:27:29,081 PLEASE TURN ON YOUR CAMERA IF 2006 01:27:29,081 --> 01:27:29,882 YOU'RE COMFORTABLE AND TELL US 2007 01:27:29,882 --> 01:27:40,259 WHAT YOU HAVE TO SAY. 2008 01:28:03,716 --> 01:28:07,620 >> ANYONE WHO WANTS TO ASK A 2009 01:28:07,620 --> 01:28:08,187 QUESTION USE THE RAISE HAND 2010 01:28:08,187 --> 01:28:18,097 FEATURE. 2011 01:28:18,097 --> 01:28:19,798 SO ENABLE YOUR CAMERA AND 2012 01:28:19,798 --> 01:28:23,135 MICROPHONE AND THEN YOU CAN TURN 2013 01:28:23,135 --> 01:28:33,279 IT OFF. 2014 01:28:40,486 --> 01:28:42,955 WE DON'T HAVE ALL THE NAMES. 2015 01:28:42,955 --> 01:28:52,631 I'M GOING TO TRY TO COME BACK TO 2016 01:28:52,631 --> 01:28:56,402 THIS. 2017 01:28:56,402 --> 01:28:57,670 >> CAN YOU HEAR ME? 2018 01:28:57,670 --> 01:28:57,903 >> YES. 2019 01:28:57,903 --> 01:29:03,275 THANK YOU. 2020 01:29:03,275 --> 01:29:04,243 >> YEAH, HI. 2021 01:29:04,243 --> 01:29:08,714 THANKS FOR THE VERY INTERESTING 2022 01:29:08,714 --> 01:29:12,418 PRESENTATIONS IT MAY BE NAIVE TO 2023 01:29:12,418 --> 01:29:15,487 THINK WE CAN DISCUSS POLITICIANS 2024 01:29:15,487 --> 01:29:18,791 AND DO YOU THINK IT WILL AFFECT 2025 01:29:18,791 --> 01:29:22,661 AND SEEMS LIKE IT COULD BE SEEN 2026 01:29:22,661 --> 01:29:25,297 AS A DEI EFFORT SO CAN YOU 2027 01:29:25,297 --> 01:29:26,599 COMMENT ON HOW POLITICS CAN 2028 01:29:26,599 --> 01:29:27,833 AFFECT SOME MUCH THESE? 2029 01:29:27,833 --> 01:29:30,302 >> THANK YOU FOR THAT VERY 2030 01:29:30,302 --> 01:29:31,704 IMPORTANT QUESTION. 2031 01:29:31,704 --> 01:29:34,506 I THINK DR. KOROSHETZ MAY BE 2032 01:29:34,506 --> 01:29:36,642 ABLE TO SPEAK THAT. 2033 01:29:36,642 --> 01:29:39,645 >> DR. KOROSHETZ: DEMENTIA IS A 2034 01:29:39,645 --> 01:29:40,312 POLITICAL PROBLEM. 2035 01:29:40,312 --> 01:29:40,879 LET'S GET THAT ON THE TABLE 2036 01:29:40,879 --> 01:29:46,318 FIRST. 2037 01:29:46,318 --> 01:29:52,791 HEALTH DISPARITIES ARE PROGRAMS 2038 01:29:52,791 --> 01:29:58,264 THAT EVERYONE, HEALTH CARE AND 2039 01:29:58,264 --> 01:30:00,633 EVERYONE HAS TO WRESTLE WITH. 2040 01:30:00,633 --> 01:30:05,704 HEALTH DISPARITIES ARE NOT 2041 01:30:05,704 --> 01:30:08,907 INCLUDED IN THE GOVERNMENT'S DEI 2042 01:30:08,907 --> 01:30:12,645 ADMINISTRATIONS AT THE CURRENT 2043 01:30:12,645 --> 01:30:17,683 TIME. 2044 01:30:17,683 --> 01:30:19,752 ALL INDICATIONS TALKING TO THE 2045 01:30:19,752 --> 01:30:21,553 NIH DIRECTOR WHO HAS MADE IT 2046 01:30:21,553 --> 01:30:23,222 VERY CLEAR, HEALTH DISPARITIES 2047 01:30:23,222 --> 01:30:26,625 AND DEI ARE COMPLETELY DIFFERENT 2048 01:30:26,625 --> 01:30:28,661 ISSUES ACCORDING TO THE 2049 01:30:28,661 --> 01:30:29,895 ADMINISTRATION'S DEFINITION. 2050 01:30:29,895 --> 01:30:35,567 WE REALLY DO NEED TO RECOGNIZE 2051 01:30:35,567 --> 01:30:39,104 AND MORE THAN RECOGNIZE, DEVELOP 2052 01:30:39,104 --> 01:30:40,339 INTERVENTIONS THAT WILL REDUCE 2053 01:30:40,339 --> 01:30:41,707 HEALTH DISPARITIES WITH REGARD 2054 01:30:41,707 --> 01:30:44,643 TO DEMENTIA AND DEMENTIA CARE IN 2055 01:30:44,643 --> 01:30:47,880 THE U.S. AND THAT'S REALLY 2056 01:30:47,880 --> 01:30:51,850 IMPORTANT FOR THE SUMMIT. 2057 01:30:51,850 --> 01:30:55,654 WE'RE GOING TO HEAR ON JUNE 2 2058 01:30:55,654 --> 01:30:58,157 PARTICULARLY ON THE ISSUE. 2059 01:30:58,157 --> 01:30:58,791 VERY IMPORTANT. 2060 01:30:58,791 --> 01:31:04,129 I'M GLAD TO GET THAT CLEARED UP. 2061 01:31:04,129 --> 01:31:06,265 >> SORRY TO PUSH FOR THE 2062 01:31:06,265 --> 01:31:11,236 FOLLOW-UP CAN I ASKED ABOUT THE 2063 01:31:11,236 --> 01:31:13,739 PROPOSED 44% DECREASE IN NIH 2064 01:31:13,739 --> 01:31:14,807 BUDGET FOR NEXT YEAR. 2065 01:31:14,807 --> 01:31:16,775 DO YOU THINK IT'S LIKELY TO 2066 01:31:16,775 --> 01:31:21,513 AFFECT NIA AND NINDS? 2067 01:31:21,513 --> 01:31:24,650 >> DR. KOROSHETZ: THE BUDGETS 2068 01:31:24,650 --> 01:31:26,185 COME OUT IN DIFFERENT STAGES AND 2069 01:31:26,185 --> 01:31:28,320 GET WORKED ON BY THE SENATE AND 2070 01:31:28,320 --> 01:31:28,654 HOUSE. 2071 01:31:28,654 --> 01:31:31,857 WE HAVE NO IDEA WHAT THE 2072 01:31:31,857 --> 01:31:33,225 BUDGET'S GOING TO BE. 2073 01:31:33,225 --> 01:31:34,126 SO, WE CAN'T REALLY COMMENT 2074 01:31:34,126 --> 01:31:34,793 BECAUSE WE DON'T KNOW WHAT THE 2075 01:31:34,793 --> 01:31:43,702 BUDGET IS. 2076 01:31:43,702 --> 01:31:47,873 >> SHOULD WE TRY AGAIN? 2077 01:31:47,873 --> 01:31:49,641 AFTER THAT WE'LL SEE DALE 2078 01:31:49,641 --> 01:31:58,717 LESINA. 2079 01:31:58,717 --> 01:32:00,652 IT LOOKS LIKE THERE'S A BLOCK 2080 01:32:00,652 --> 01:32:01,687 SIGN. 2081 01:32:01,687 --> 01:32:04,890 LET'S GO FORWARD WITH DALE FOR 2082 01:32:04,890 --> 01:32:05,858 NOW. 2083 01:32:05,858 --> 01:32:06,392 DALE, PLEASE, SHARE YOUR 2084 01:32:06,392 --> 01:32:12,564 COMMENTS. 2085 01:32:12,564 --> 01:32:16,001 WE CAN'T QUITE HEAR YOU YET. 2086 01:32:16,001 --> 01:32:20,639 ARE YOU ABLE STO -- TO UNMUTE? 2087 01:32:20,639 --> 01:32:22,741 WE CAN SEE YOU. 2088 01:32:22,741 --> 01:32:24,543 WE CAN'T HEAR YOU YET. 2089 01:32:24,543 --> 01:32:28,647 ARE YOU ABLE TO UNMUTE? 2090 01:32:28,647 --> 01:32:37,923 NO, CAN'T UNMUTE. 2091 01:32:37,923 --> 01:32:39,324 I WISH WE COULD HEAR YOUR 2092 01:32:39,324 --> 01:32:40,659 COMMENT. 2093 01:32:40,659 --> 01:32:41,860 HMM. 2094 01:32:41,860 --> 01:32:46,298 WHILE THE TEAM IS TROUBLE 2095 01:32:46,298 --> 01:32:47,866 SHOOTING LET'S SEE IF ANOTHER 2096 01:32:47,866 --> 01:32:51,804 PERSON CAN UNMUTE. 2097 01:32:51,804 --> 01:32:53,872 WE'LL COME BACK TO YOU DALE. 2098 01:32:53,872 --> 01:32:57,543 HOPEFULLY WE CAN FIX THIS. 2099 01:32:57,543 --> 01:32:59,812 ERIC, I THINK ALSO NOT ABLE TO. 2100 01:32:59,812 --> 01:33:01,346 WE'LL TRY ONE MORE PERSON 2101 01:33:01,346 --> 01:33:04,550 OTHERWISE THIS SEEMS TO BE A 2102 01:33:04,550 --> 01:33:08,454 PROBLEM ON OUR END. 2103 01:33:08,454 --> 01:33:09,755 >> I THINK SO. 2104 01:33:09,755 --> 01:33:11,089 CAN YOU HEAR ME? 2105 01:33:11,089 --> 01:33:11,857 >> YES. 2106 01:33:11,857 --> 01:33:17,863 >> ALL RIGHT. 2107 01:33:17,863 --> 01:33:22,968 >> DR. KOROSHETZ: PENNY, HOW 2108 01:33:22,968 --> 01:33:23,869 DID YOU DO THAT? 2109 01:33:23,869 --> 01:33:26,305 >> MAGIC. 2110 01:33:26,305 --> 01:33:29,508 I THINK SOMEONE ENABLED IT 2111 01:33:29,508 --> 01:33:32,244 BECAUSE IT WASN'T POSSIBLE FOR 2112 01:33:32,244 --> 01:33:35,881 ME AND SEEMS TO BE FINE SOMEONE 2113 01:33:35,881 --> 01:33:38,484 ON YOUR I.T. SIDE ENABLED IT BUT 2114 01:33:38,484 --> 01:33:39,618 I THINK THE PEOPLE HERE HAVE 2115 01:33:39,618 --> 01:33:40,919 BEEN TRYING SO I CAN'T ANSWER 2116 01:33:40,919 --> 01:33:44,122 THAT FOR YOU, WALTER. 2117 01:33:44,122 --> 01:33:46,091 I WILL COMMENT ON A QUESTION. 2118 01:33:46,091 --> 01:33:47,860 NUMBER ONE, THANK YOU TO ALL OF 2119 01:33:47,860 --> 01:33:49,194 YOU FOR YOUR EXCEPTIONAL WORK 2120 01:33:49,194 --> 01:33:50,796 AND I WANT TO THANK THE NIH AND 2121 01:33:50,796 --> 01:33:52,231 ALL THE ACADEMIC RESEARCH 2122 01:33:52,231 --> 01:33:55,534 LEADERS WHO ARE BEHIND THE 2123 01:33:55,534 --> 01:34:05,777 BREAKTHRO 2124 01:34:07,312 --> 01:34:10,249 BREAKTHROUGHS THAT BROUGHT OUT 2125 01:34:10,249 --> 01:34:13,719 TO THE CONVERSATION TO HOW TO 2126 01:34:13,719 --> 01:34:22,361 ACCESS AND YOU HAVE PEOPLE WITH 2127 01:34:22,361 --> 01:34:24,630 PARKINSON'S DISEASE THAT DEVELOP 2128 01:34:24,630 --> 01:34:28,300 LEWY BODY DISEASE AND DISORDERS 2129 01:34:28,300 --> 01:34:32,404 ACTUALLY FTD INITIALLY DIAGNOSED 2130 01:34:32,404 --> 01:34:35,140 WITHIN THE PARKINSON CLINICS. 2131 01:34:35,140 --> 01:34:38,677 WE HAVE THE VARIANT FORMS THAT 2132 01:34:38,677 --> 01:34:39,278 MAY NOT MANIFEST IN THE SAME 2133 01:34:39,278 --> 01:34:41,146 WAY. 2134 01:34:41,146 --> 01:34:42,047 IN THE WORK YOUR RECOMMENDING 2135 01:34:42,047 --> 01:34:44,182 AND HOW TO IMPROVE ACCESS TO 2136 01:34:44,182 --> 01:34:45,784 DIAGNOSIS, CAN YOU TALK ABOUT 2137 01:34:45,784 --> 01:34:48,420 HOW TO INCORPORATE THAT 2138 01:34:48,420 --> 01:34:50,656 COMPLEXITY PEOPLE CAN BE SHOWING 2139 01:34:50,656 --> 01:34:52,624 UP WITH DIFFERENT TYPES OF 2140 01:34:52,624 --> 01:34:54,860 SYMPTOMS, IT'S NOT ALWAYS 2141 01:34:54,860 --> 01:34:57,362 MODERATE COGNITIVE IMPAIRMENT. 2142 01:34:57,362 --> 01:35:01,733 HOW DO WE GET BETTER ACCESS TO 2143 01:35:01,733 --> 01:35:02,334 EVERYBODY FACING ONE OF THE 2144 01:35:02,334 --> 01:35:04,069 ALZHEIMER'S DISEASE OR 2145 01:35:04,069 --> 01:35:04,670 ALZHEIMER'S DISEASE RELATED 2146 01:35:04,670 --> 01:35:08,640 DEMENTIAS? 2147 01:35:08,640 --> 01:35:11,076 >> THANK YOU, PENNY, FOR THAT. 2148 01:35:11,076 --> 01:35:12,110 I'LL GIVE A BRIEF ANSWER AND IF 2149 01:35:12,110 --> 01:35:14,279 ANYBODY ELSE WANTS TO SPEAK, I 2150 01:35:14,279 --> 01:35:15,314 WANT TO SAY WE'RE NOTING THIS 2151 01:35:15,314 --> 01:35:20,652 DOWN AND CAN MAKE SURE OUR 2152 01:35:20,652 --> 01:35:21,219 RECOMMENDATION INCLUDES 2153 01:35:21,219 --> 01:35:22,721 EVALUATION FOR NOT ONLY THE 2154 01:35:22,721 --> 01:35:25,624 TYPICAL SIGNS OF EARLY DISEASE 2155 01:35:25,624 --> 01:35:27,492 BUT THE LESS TYPICAL SIGNS SUCH 2156 01:35:27,492 --> 01:35:28,660 AS BEHAVIORAL SYMPTOMS. 2157 01:35:28,660 --> 01:35:31,530 I'M NOTING THIS AS A COMMENT FOR 2158 01:35:31,530 --> 01:35:32,631 US TO INCORPORATE. 2159 01:35:32,631 --> 01:35:39,171 THANK YOU. 2160 01:35:39,171 --> 01:35:49,514 SHOULD WE TRY AGAIN? 2161 01:35:50,449 --> 01:35:53,385 >> IN THE TEAMS PLATFORM AT THE 2162 01:35:53,385 --> 01:35:56,655 TOP THERE'S A CAMERA ICON. 2163 01:35:56,655 --> 01:35:59,257 WE ENABLED TO USE THE BUTTONS. 2164 01:35:59,257 --> 01:36:00,392 SO YOU CLICK ON IT AND IT SHOULD 2165 01:36:00,392 --> 01:36:03,662 UNMUTE YOU. 2166 01:36:03,662 --> 01:36:06,898 I CAN SEE DALE YOU STILL 2167 01:36:06,898 --> 01:36:08,600 [INDISCERNIBLE] 2168 01:36:16,708 --> 01:36:17,209 >> IT LOOKS LIKE ERIC IS 2169 01:36:17,209 --> 01:36:21,179 UNMUTED. 2170 01:36:21,179 --> 01:36:23,949 >> THANK YOU. 2171 01:36:23,949 --> 01:36:34,459 YES AND THANK YOU DR. KONKWLO. 2172 01:36:40,699 --> 01:36:50,976 LET'S HEAR FROM YOU. 2173 01:37:17,069 --> 01:37:18,837 >> IT KIND OF GOES BACK AND 2174 01:37:18,837 --> 01:37:21,039 FORTH BETWEEN A MUTE AND BLOCKED 2175 01:37:21,039 --> 01:37:24,009 SIGN WHICH MAKES ME THINK IT'S 2176 01:37:24,009 --> 01:37:27,679 NOT JUST -- 2177 01:37:27,679 --> 01:37:31,950 >> I'M TRYING TO MUTE AND UNMUTE 2178 01:37:31,950 --> 01:37:32,684 BUT FOR WHATEVER REASON IT'S NOT 2179 01:37:32,684 --> 01:37:35,353 ABLE TO [INDISCERNIBLE] 2180 01:37:35,721 --> 01:37:38,223 >> HI, DR. MCCARTNEY. 2181 01:37:38,223 --> 01:37:41,960 MAYBE IT'S THAT WHEN LLOYD IS 2182 01:37:41,960 --> 01:37:43,695 DOING IT I THINK THE USER IS 2183 01:37:43,695 --> 01:37:44,362 SIMULTANEOUSLY TRYING TO UNMUTE 2184 01:37:44,362 --> 01:37:47,866 THEMSELVES. 2185 01:37:47,866 --> 01:37:49,901 IT MAY CAUSE A PROBLEM. 2186 01:37:49,901 --> 01:37:53,705 WE ALSO HAVE A LINK ON VIDEOCAST 2187 01:37:53,705 --> 01:37:56,641 WHERE YOU CAN SUBMIT WRITTEN 2188 01:37:56,641 --> 01:37:59,978 COMMENTS. 2189 01:37:59,978 --> 01:38:01,079 WE'LL BUT THAT INFORMATION ON 2190 01:38:01,079 --> 01:38:04,649 THE SLIDE SO EVERYONE CAN SEE 2191 01:38:04,649 --> 01:38:14,726 IT. 2192 01:38:16,194 --> 01:38:17,262 THIS IS REALLY THE IMPORTANT 2193 01:38:17,262 --> 01:38:18,730 PART OF THE MEETING AND WHAT I 2194 01:38:18,730 --> 01:38:20,632 CARE ABOUT MOST IS GETTING INPUT 2195 01:38:20,632 --> 01:38:22,701 FROM ALL OF YOU. 2196 01:38:22,701 --> 01:38:24,035 SORRY FOR THE TECHNICAL 2197 01:38:24,035 --> 01:38:24,503 PROBLEMS. 2198 01:38:24,503 --> 01:38:28,640 >> IS IT POSSIBLE TO UNLOCK THE 2199 01:38:28,640 --> 01:38:38,750 CHAT? 2200 01:38:43,722 --> 01:38:45,957 >> RAUL, DO YOU WANT TO ASK A 2201 01:38:45,957 --> 01:38:46,558 QUESTION? 2202 01:38:46,558 --> 01:38:48,627 >> THANK YOU FOR THE WONDERFUL 2203 01:38:48,627 --> 01:38:52,631 QUESTIONS COMMENT ON THE 2204 01:38:52,631 --> 01:38:56,201 NEUROPSYCHIATRIC SYMPTOMS IN 2205 01:38:56,201 --> 01:38:56,802 THIS POPULATIONS AND CURRENT 2206 01:38:56,802 --> 01:39:03,408 MEDICATIONS. 2207 01:39:03,408 --> 01:39:06,545 >> I THINK THE QUESTION IS CAN 2208 01:39:06,545 --> 01:39:08,446 WE COMMENT ON THE 2209 01:39:08,446 --> 01:39:09,014 NEUROPSYCHIATRIC SYMPTOMS. 2210 01:39:09,014 --> 01:39:12,651 I THINK IT'S A NICE POINT THAT 2211 01:39:12,651 --> 01:39:15,120 WE NEED TO MAKE SURE THAT WHEN 2212 01:39:15,120 --> 01:39:20,659 WE'RE EVALUATING PATIENTS IN 2213 01:39:20,659 --> 01:39:21,993 PRIMARY SETTING WE'RE LOOKING 2214 01:39:21,993 --> 01:39:23,295 FOR THOSE SYMPTOMS. 2215 01:39:23,295 --> 01:39:23,995 ANYONE ELSE IN THE SESSION WANT 2216 01:39:23,995 --> 01:39:30,702 TO COMMENT? 2217 01:39:30,702 --> 01:39:32,871 >> I WOULD JUST OFFER IT'S ALSO 2218 01:39:32,871 --> 01:39:35,974 IMPORTANT IN TERMS OF 2219 01:39:35,974 --> 01:39:38,043 COORDINATED CARE TO IDENTIFY THE 2220 01:39:38,043 --> 01:39:39,511 SYMPTOMS AND HAVE A COORDINATED 2221 01:39:39,511 --> 01:39:41,780 APPROACH TO CLINICAL AND 2222 01:39:41,780 --> 01:39:43,481 NON-CLINICAL INTERVENTIONS FOR 2223 01:39:43,481 --> 01:39:44,649 THE SYMPTOMS. 2224 01:39:44,649 --> 01:39:47,052 SO THE DRUG THERAPIES AS PERHAPS 2225 01:39:47,052 --> 01:39:49,554 LAST RESORT BUT KNOWING THERE'S 2226 01:39:49,554 --> 01:39:54,960 A LOT OF NON-DRUG INTERVENTIONS 2227 01:39:54,960 --> 01:39:55,660 NON-EMERGENCY SITUATIONS ARE 2228 01:39:55,660 --> 01:39:58,096 TRIED INITIALLY AND IN MANY 2229 01:39:58,096 --> 01:39:59,631 CASES ARE ENTIRELY SUCCESSFUL 2230 01:39:59,631 --> 01:40:01,099 BUT JUST KNOWING WE NEED TO 2231 01:40:01,099 --> 01:40:02,500 CONTINUE ADVANCING THE RESEARCH 2232 01:40:02,500 --> 01:40:07,239 ABOUT THE NON-PHARMACOLOGIC AND 2233 01:40:07,239 --> 01:40:08,540 PHARMACOLOGIC INTERVENTIONS AND 2234 01:40:08,540 --> 01:40:11,810 THE CLINICIANS AND INDIVIDUALS 2235 01:40:11,810 --> 01:40:17,048 WITH COGNITIVE EXPERIENCES HAVE 2236 01:40:17,048 --> 01:40:21,419 A FULL COMPLEMENT TO ADDRESS THE 2237 01:40:21,419 --> 01:40:23,588 INCREDIBLY SERIOUS AND COMPLEX 2238 01:40:23,588 --> 01:40:24,289 MANIFESTATIONS OF COGNITIVE 2239 01:40:24,289 --> 01:40:24,856 IMPAIRMENT FROM INDIVIDUALS. 2240 01:40:24,856 --> 01:40:24,923 2241 01:40:29,594 --> 01:40:32,631 >> THAT DOVETAILS NICELY WITH 2242 01:40:32,631 --> 01:40:39,771 DR. SNYDER'S PRESENTATION FOR 2243 01:40:39,771 --> 01:40:45,744 TREATING AND DIAGNOSING AND 2244 01:40:45,744 --> 01:40:47,012 PROVIDING CURES TO THESE 2245 01:40:47,012 --> 01:40:47,279 DISORDERS. 2246 01:40:47,279 --> 01:40:48,046 IT'S A NICE WAY TO TIE THEM 2247 01:40:48,046 --> 01:40:51,583 TOGETHER. 2248 01:40:51,583 --> 01:40:53,752 >> MAYBE JUST TO ADD -- SORRY, I 2249 01:40:53,752 --> 01:40:55,086 CAN'T TURN ON MY CAMERA. 2250 01:40:55,086 --> 01:40:57,722 MAYBE JUST TO ADD THE ONE PIECE 2251 01:40:57,722 --> 01:40:59,090 AS WE THINK ABOUT THE SPECTRUM 2252 01:40:59,090 --> 01:41:01,359 OF SYMPTOMS THAT AN INDIVIDUAL 2253 01:41:01,359 --> 01:41:03,795 MY EXPERIENCE. 2254 01:41:03,795 --> 01:41:04,663 WE WERE INTENTIONAL IN TALKING 2255 01:41:04,663 --> 01:41:09,467 AROUND PRIMARY AND SECONDARY 2256 01:41:09,467 --> 01:41:11,236 PREVENTION AND DISEASES IS 2257 01:41:11,236 --> 01:41:12,270 POTENTIALLY SOMETHING VERY 2258 01:41:12,270 --> 01:41:13,838 DIFFERENT AND WE MADE THAT 2259 01:41:13,838 --> 01:41:14,572 DISTINCTION WITHIN OUR 2260 01:41:14,572 --> 01:41:17,943 DISCUSSIONS AND THINKING ABOUT 2261 01:41:17,943 --> 01:41:18,543 BEHAVIORAL CONSIDERATIONS A 2262 01:41:18,543 --> 01:41:19,778 PERSON MADE PART OF THAT AS WE 2263 01:41:19,778 --> 01:41:22,714 THINK ABOUT THE PRIMARY AND 2264 01:41:22,714 --> 01:41:24,649 SECONDARY PREVENTION. 2265 01:41:24,649 --> 01:41:26,451 OF COURSE THE FULL SPECTRUM OF 2266 01:41:26,451 --> 01:41:29,154 THE RECOMMENDATION. 2267 01:41:29,154 --> 01:41:30,055 >> WONDERFUL. 2268 01:41:30,055 --> 01:41:38,330 AND I'D JUST ENCOURAGE DALE AND 2269 01:41:38,330 --> 01:41:39,698 AN I'LL TURN NOW TO SARA 2270 01:41:39,698 --> 01:41:49,841 DELANEY. 2271 01:42:14,265 --> 01:42:16,468 >> AND IN TREATING DEMENTIA FOR 2272 01:42:16,468 --> 01:42:18,103 PEOPLE WHO DON'T HAVE A 2273 01:42:18,103 --> 01:42:19,804 CAREGIVER OR SOCIALLY ISOLATED. 2274 01:42:19,804 --> 01:42:30,348 I WONDERED IF THAT WAS PART OF 2275 01:42:31,916 --> 01:42:32,117 THAT. 2276 01:42:32,117 --> 01:42:34,119 >> THIS IS EXPLICITLY PART OF 2277 01:42:34,119 --> 01:42:37,222 OUR RECOMMENDATIONS FOR 2278 01:42:37,222 --> 01:42:39,591 IMPROVING COLLABORATIVE DEMENTIA 2279 01:42:39,591 --> 01:42:42,360 CARE TO MEET THE NEEDS OF PEOPLE 2280 01:42:42,360 --> 01:42:43,828 WITHOUT AN INVOLVED CAREGIVER 2281 01:42:43,828 --> 01:42:47,032 THAT LIVE ALONE. 2282 01:42:47,032 --> 01:42:48,466 SOMETHING WE SHOULD THINK ABOUT 2283 01:42:48,466 --> 01:42:50,268 ACROSS ALL FOUR OF OUR 2284 01:42:50,268 --> 01:42:50,869 RECOMMENDATIONS SO I'M NOTING 2285 01:42:50,869 --> 01:42:52,637 THIS. 2286 01:42:52,637 --> 01:42:57,509 >> THANK YOU. 2287 01:42:57,509 --> 01:42:59,377 >> LET'S TRY MIA. 2288 01:42:59,377 --> 01:43:01,146 >> HI, THANK YOU ALL. 2289 01:43:01,146 --> 01:43:03,481 I'M ONE OF THE PARTICIPATING 2290 01:43:03,481 --> 01:43:04,349 GUIDE SITES. 2291 01:43:04,349 --> 01:43:07,919 ONE THING I WANTED TO BRING UP 2292 01:43:07,919 --> 01:43:11,823 IS THAT THE NUMBER OF FOLKS WHO 2293 01:43:11,823 --> 01:43:13,558 ARE ELIGIBLE FOR GUIDE IS 2294 01:43:13,558 --> 01:43:18,463 SMALLER THAN POTENTIALLY 2295 01:43:18,463 --> 01:43:19,864 ELIGIBLE BECAUSE IT'S ONLY FOLKS 2296 01:43:19,864 --> 01:43:21,633 WITH TRADITIONAL MEDICARE. 2297 01:43:21,633 --> 01:43:23,101 I'M WONDERING IF THE PRESENTERS 2298 01:43:23,101 --> 01:43:26,404 HAVE ANY SUGGESTIONS OR ADVOCACY 2299 01:43:26,404 --> 01:43:30,075 ON THE PART OF ASKING MEDICARE 2300 01:43:30,075 --> 01:43:32,744 ADVANTAGE PROGRAMS TO ALSO 2301 01:43:32,744 --> 01:43:35,380 CONSIDER A COLLABORATIVE 2302 01:43:35,380 --> 01:43:38,149 DEMENTIA CARE MODEL BECAUSE THAT 2303 01:43:38,149 --> 01:43:40,652 IS THE MAJORITY OF THE MARKET IN 2304 01:43:40,652 --> 01:43:44,422 MANY PARTS OF THE COUNTRY. 2305 01:43:44,422 --> 01:43:46,024 >> DO YOU WANT TO TAKE THIS OR 2306 01:43:46,024 --> 01:43:47,392 SHOULD I? 2307 01:43:47,392 --> 01:43:48,059 >> I'LL GIVE IT A TRY. 2308 01:43:48,059 --> 01:43:52,097 THANKS FOR YOUR QUESTION. 2309 01:43:52,097 --> 01:43:56,568 SO, TWO POINTS, IS ONE, YES, THE 2310 01:43:56,568 --> 01:43:58,503 ADVOCACY COMMUNITY AND OTHERS 2311 01:43:58,503 --> 01:44:01,806 ARE WORKING HARD TO EXPAND 2312 01:44:01,806 --> 01:44:04,676 ACCESS BEYOND PARTICIPANT SITES 2313 01:44:04,676 --> 01:44:15,153 FOR THE OTHER 7 MILLION NOT 2314 01:44:16,488 --> 01:44:19,824 ELIGIBLE TO ENSURE SHAY HAVE 2315 01:44:19,824 --> 01:44:29,100 ACCESS AND THERE ARE MANY OTHER 2316 01:44:29,100 --> 01:44:34,205 AVENUES TO IMPROVE DEMENTIA CARE 2317 01:44:34,205 --> 01:44:36,074 OUTSIDE OF THIS MODEL FROM CMS. 2318 01:44:36,074 --> 01:44:39,344 ON A RECOMMENDATION SITE YOU SAW 2319 01:44:39,344 --> 01:44:45,683 REFERENCE TO HCVS. 2320 01:44:45,683 --> 01:44:47,352 AND IT'S COMMUNITY-BASED 2321 01:44:47,352 --> 01:44:48,353 SERVICES. 2322 01:44:48,353 --> 01:44:52,323 MANY ARE UNCOORDINATED THROUGH 2323 01:44:52,323 --> 01:44:56,494 VARIOUS SERVICE PROVIDERS AND WE 2324 01:44:56,494 --> 01:44:58,029 WANT TO SEE GREATER COORDINATION 2325 01:44:58,029 --> 01:44:59,297 BETWEEN NOT ONLY CLINICAL 2326 01:44:59,297 --> 01:45:00,632 PROVIDERS BUT NON-CLINICAL 2327 01:45:00,632 --> 01:45:03,034 SUPPORT PROVIDERS. 2328 01:45:03,034 --> 01:45:05,003 THAT CAN HAPPEN THROUGH THE 2329 01:45:05,003 --> 01:45:06,204 GUIDE MODEL AND THROUGH 2330 01:45:06,204 --> 01:45:06,471 MEDICARE. 2331 01:45:06,471 --> 01:45:11,242 WE WANT TO MAKE SURE THAT'S 2332 01:45:11,242 --> 01:45:12,043 ACCESSIBLE TO PEOPLE NOT PART OF 2333 01:45:12,043 --> 01:45:14,779 THE MODEL AND WANT TO TRY TO 2334 01:45:14,779 --> 01:45:16,514 PUSH MEDICARE TO DEVELOP THE 2335 01:45:16,514 --> 01:45:18,183 EVIDENCE THROUGH THE GUIDE MODEL 2336 01:45:18,183 --> 01:45:21,719 AS QUICKLY AS POSSIBLE HOPEFULLY 2337 01:45:21,719 --> 01:45:24,255 FASTER THAN THE MODEL AND GET 2338 01:45:24,255 --> 01:45:27,292 THIS TO A FULL MEDICARE BENEFIT 2339 01:45:27,292 --> 01:45:30,128 BOTH FOR TRADITIONAL MEDICARE 2340 01:45:30,128 --> 01:45:31,663 AND MEDICARE ADVANTAGE 2341 01:45:31,663 --> 01:45:32,263 PARTICIPANTS HOPEFULLY SOONER 2342 01:45:32,263 --> 01:45:34,999 THAN EIGHT YEARS. 2343 01:45:34,999 --> 01:45:39,404 >> WE HAVE TIME FOR ONE MORE 2344 01:45:39,404 --> 01:45:41,172 QUESTION AND THEN AFTER THAT 2345 01:45:41,172 --> 01:45:44,576 PLEASE STAY ON AND AMBER 2346 01:45:44,576 --> 01:45:48,646 MCCARTNEY WILL GIVE GUIDANCE ON 2347 01:45:48,646 --> 01:45:51,316 PROVIDING WRITTEN COMMENTS AND 2348 01:45:51,316 --> 01:45:56,187 SUPPORT ON THE MICROPHONE 2349 01:45:56,187 --> 01:45:56,654 ISSUES. 2350 01:45:56,654 --> 01:45:58,256 WE HAVE A COMMENT OR QUESTION. 2351 01:45:58,256 --> 01:45:59,224 >> AS THE BEEN WONDERFUL TO 2352 01:45:59,224 --> 01:46:01,059 LISTEN TO ALL THE PRIORITIES. 2353 01:46:01,059 --> 01:46:02,694 I'M JUST FOLLOWING UP ON AN 2354 01:46:02,694 --> 01:46:06,531 EARLIER QUESTION IN TERMS OF 2355 01:46:06,531 --> 01:46:06,798 DIAGNOSES. 2356 01:46:06,798 --> 01:46:08,533 I WORK WITH CARE PARTNERS OF 2357 01:46:08,533 --> 01:46:13,638 PEOPLE WITH LEWY BODY DEMENTIA. 2358 01:46:13,638 --> 01:46:15,006 ONE COMMENT THAT COMES UP FROM 2359 01:46:15,006 --> 01:46:16,674 SPOUSES AND SINCE MANY ARE WOMEN 2360 01:46:16,674 --> 01:46:19,978 AND OLDER ADULTS, BECAUSE OF THE 2361 01:46:19,978 --> 01:46:22,013 FLUCTUATIONS IN COGNITION IN 2362 01:46:22,013 --> 01:46:24,649 LEWY BODY DEMENTIA IS SOMETHING 2363 01:46:24,649 --> 01:46:28,419 THAT SOMETIMES BECOMES TRICKY. 2364 01:46:28,419 --> 01:46:29,520 PRIMARY CARE PHYSICIANS MAY NOT 2365 01:46:29,520 --> 01:46:31,189 NOTICE IT WHEN THEY SEE THE 2366 01:46:31,189 --> 01:46:33,658 PATIENT, THEY THINK THE PATIENT 2367 01:46:33,658 --> 01:46:34,759 IS FUNCTIONING PERFECTLY FINE 2368 01:46:34,759 --> 01:46:37,161 AND RESPONDING TO QUESTIONS 2369 01:46:37,161 --> 01:46:38,796 PERFECTLY FINE WHILE THE SPOUSE 2370 01:46:38,796 --> 01:46:44,636 AT HOME IS SEEING THE 2371 01:46:44,636 --> 01:46:44,936 FLUCTUATION. 2372 01:46:44,936 --> 01:46:47,739 NOTING THE FLUCTUATIONS IS ONE 2373 01:46:47,739 --> 01:46:48,640 THING TO COMMENT ON AS THE 2374 01:46:48,640 --> 01:46:52,644 DIAGNOSTIC IMPORTANCE. 2375 01:46:52,644 --> 01:46:54,212 >> YES, OF COURSE. 2376 01:46:54,212 --> 01:47:04,756 I WANTED TO INVITE JULIE OR I'LL 2377 01:47:05,123 --> 01:47:05,890 NOTE THE IMPORTANT COMMENT THAT 2378 01:47:05,890 --> 01:47:08,393 WE NEED TO MAKE SURE TO INCLUDE 2379 01:47:08,393 --> 01:47:09,227 DETECTION AND DIAGNOSIS IN 2380 01:47:09,227 --> 01:47:10,261 PRIMARY CARE AND THIS IS 2381 01:47:10,261 --> 01:47:12,997 SOMETHING THEY KNOW ABOUT AND 2382 01:47:12,997 --> 01:47:20,004 THEY'RE LOOKING FOR. 2383 01:47:20,004 --> 01:47:21,272 WITH THAT WE'LL LEAVE COMMENTS 2384 01:47:21,272 --> 01:47:22,707 AND I WANT TO ENCOURAGE THOSE 2385 01:47:22,707 --> 01:47:25,443 WHO HAD A COMMENT AND WEREN'T 2386 01:47:25,443 --> 01:47:26,477 ABLE TO SHARE IT, PLEASE PROVIDE 2387 01:47:26,477 --> 01:47:27,478 IT IN WRITING. 2388 01:47:27,478 --> 01:47:28,313 WE'RE GOING TO GO THROUGH EVERY 2389 01:47:28,313 --> 01:47:29,914 ONE OF THE COMMENTS AND THINK 2390 01:47:29,914 --> 01:47:31,582 HOW TO INTEGRATE THEM IN THE 2391 01:47:31,582 --> 01:47:31,949 RECOMMENDATIONS. 2392 01:47:31,949 --> 01:47:33,184 THIS IS WHY WE'RE HERE TODAY. 2393 01:47:33,184 --> 01:47:35,887 I'M GOING TO TURN IT OVER -- 2394 01:47:35,887 --> 01:47:37,255 ACTUALLY, YOU HAVE A BREAK FOR 2395 01:47:37,255 --> 01:47:38,122 ONLY 11 MINUTES. 2396 01:47:38,122 --> 01:47:40,658 WE'RE GOING TO COME BACK AT THE 2397 01:47:40,658 --> 01:47:44,662 HOUR FOR OUR NEXT SESSION ON FRONTAL TEMPORAL DEMENTIA AND 2398 01:47:44,662 --> 01:47:51,110 COME BACK ON FOR GUIDANCE ON COMMENTS OR USING YOUR MICROPHONE. 2399 01:47:51,110 --> 01:47:54,413 >> WE'RE GOING TO GET STARTED 2400 01:47:54,413 --> 01:47:59,451 AND LINDE JACOBS WILL BE ON I 2401 01:47:59,451 --> 01:48:00,285 INTRODUCE YOU. 2402 01:48:00,285 --> 01:48:00,853 THANK YOU TO EVERYBODY WHO 2403 01:48:00,853 --> 01:48:02,421 WORKED ON THE SETTINGS. 2404 01:48:02,421 --> 01:48:02,955 I HOPE IT'S GOING TO WORK 2405 01:48:02,955 --> 01:48:13,098 BETTER. 2406 01:48:17,536 --> 01:48:18,303 FRANK, ARE YOU READY? 2407 01:48:18,303 --> 01:48:21,240 >> IT'S MY PLEASURE TO INTRODUCE 2408 01:48:21,240 --> 01:48:23,542 LINDE JACOBS WHO SERVED ON OUR 2409 01:48:23,542 --> 01:48:28,047 SUBCOMMITTEE AND HAS BEEN A 2410 01:48:28,047 --> 01:48:35,287 WONDERFUL ADVOCATE FOR FTD AND 2411 01:48:35,287 --> 01:48:37,589 SOMEONE WHO I LEARNED A LOT 2412 01:48:37,589 --> 01:48:38,123 FROM. 2413 01:48:38,123 --> 01:48:40,759 >> THANK YOU FOR THE 2414 01:48:40,759 --> 01:48:41,093 INTRODUCTION. 2415 01:48:41,093 --> 01:48:41,493 GOOD MORNING. 2416 01:48:41,493 --> 01:48:47,299 MY NAME IS LINDE JAKESCOBS IT'S 2417 01:48:47,299 --> 01:48:49,902 PRIVILEGE AND HONOR TO SPEAK TO 2418 01:48:49,902 --> 01:48:51,637 YOU AT THE 2025 ALZHEIMER'S 2419 01:48:51,637 --> 01:48:52,471 DISEASE-RELATED DIMENTIAS 2420 01:48:52,471 --> 01:48:52,704 SUMMIT. 2421 01:48:52,704 --> 01:48:55,040 I COME TO THIS MEETING NOT ONLY 2422 01:48:55,040 --> 01:48:59,178 AS A PARTICIPANT SERVING ON THE 2423 01:48:59,178 --> 01:49:03,782 FTD SUBCOMMITTEE BUT I'VE BEEN 2424 01:49:03,782 --> 01:49:07,886 AFFECTED BY FAMILY DESTROYED BY 2425 01:49:07,886 --> 01:49:10,055 FRONTAL TEMPORAL DEMENTIA AND 2426 01:49:10,055 --> 01:49:11,590 THESE GUIDELINE CURATED TO 2427 01:49:11,590 --> 01:49:14,159 DETERMINE WHO, WHAT AND WEAR 2428 01:49:14,159 --> 01:49:16,495 APPRECIATION FUNDING ALLOCATIONS 2429 01:49:16,495 --> 01:49:18,297 WILL BE SLOTTED AND IF CHOSEN 2430 01:49:18,297 --> 01:49:20,399 INCORRECTLY WILL WILL DICTATE 2431 01:49:20,399 --> 01:49:21,967 WHETHER THERE'S SOMETHING FOR ME 2432 01:49:21,967 --> 01:49:26,438 IN THE NEXT YEAR AND IF I TOO 2433 01:49:26,438 --> 01:49:29,274 WILL SUCCUMB TO THE MISCODING IN 2434 01:49:29,274 --> 01:49:29,875 MY GENOME. 2435 01:49:29,875 --> 01:49:33,779 I WAS ASKED TO SHARE MY STORY 2436 01:49:33,779 --> 01:49:36,748 WITH FTD AND HOW TO IT'S CREATED 2437 01:49:36,748 --> 01:49:38,117 AN OPPORTUNITY TO SERVE AS A 2438 01:49:38,117 --> 01:49:39,885 PERSON WITH LIVED EXPERIENCE ON 2439 01:49:39,885 --> 01:49:40,452 A SCIENTIFIC SUBCOMMITTEE. 2440 01:49:40,452 --> 01:49:44,623 BEING THE VOICE FOR MY COMMUNITY 2441 01:49:44,623 --> 01:49:45,524 AND ADVOCATING FOR THOSE WHO 2442 01:49:45,524 --> 01:49:51,463 WORK THIS PATH ALONG SIDE. 2443 01:49:51,463 --> 01:49:53,866 YOU'LL NOTICE I LACK 2444 01:49:53,866 --> 01:49:54,166 CREDENTIALS. 2445 01:49:54,166 --> 01:49:55,901 THERE'S NO Ph.D. OR EVEN A 2446 01:49:55,901 --> 01:49:57,136 MASTER'S DEGREE. 2447 01:49:57,136 --> 01:49:59,705 I DON'T HOLD HIGHLY REGARDED 2448 01:49:59,705 --> 01:50:02,474 ACRONYMS THAT FALL ON MY NAME. 2449 01:50:02,474 --> 01:50:04,610 IT'S STRANGE I FIND MYSELF 2450 01:50:04,610 --> 01:50:07,379 SPEAKING TO INDIVIDUALS WITH THE 2451 01:50:07,379 --> 01:50:11,183 HIGHEST OF I.Q.s AND CREDENTIALS 2452 01:50:11,183 --> 01:50:12,718 AND RESUMES. 2453 01:50:12,718 --> 01:50:20,893 IT'S NOT THE CROWD I ENVISIONED 2454 01:50:20,893 --> 01:50:22,361 I'D BE IN. 2455 01:50:22,361 --> 01:50:24,129 I WANT TO SEE CHANGES IN THE 2456 01:50:24,129 --> 01:50:27,633 FIELD TO GET FTD FROM A PLACE OF 2457 01:50:27,633 --> 01:50:28,767 TERMINAL DISEASE TO DIAGNOSIS 2458 01:50:28,767 --> 01:50:31,837 WITH OPTION TO TREAT OR CURE 2459 01:50:31,837 --> 01:50:40,245 BEFORE MY BRAIN SUCCUMBS IT'S 2460 01:50:40,245 --> 01:50:43,115 IMPERATIVE I TALK ABOUT MY 2461 01:50:43,115 --> 01:50:45,584 FAMILY BECAUSE IT'S MY FUTURE. 2462 01:50:45,584 --> 01:50:46,985 I'M THE FUTURE FACE OF FTD AND 2463 01:50:46,985 --> 01:50:48,086 THE SUBJECTS IN THE GRANTS AND 2464 01:50:48,086 --> 01:50:51,523 THE PATIENTS IN THE PRIORITIES. 2465 01:50:51,523 --> 01:50:54,493 WHAT WE DECIDE HERE BECOMES MY 2466 01:50:54,493 --> 01:51:00,699 LIFE LINE. 2467 01:51:00,699 --> 01:51:10,342 I HAVE NO DISCLOSURES TO REPORT. 2468 01:51:10,342 --> 01:51:14,446 I'M A WIFE AND MOTHER TO YOUNG 2469 01:51:14,446 --> 01:51:16,448 YOUNG DAUGHTERS AND HAVE BEEN A 2470 01:51:16,448 --> 01:51:17,449 REGISTERED NURSE WORKING IN A 2471 01:51:17,449 --> 01:51:20,052 VARIETY OF SETTINGS AND WORK IN 2472 01:51:20,052 --> 01:51:21,453 AMBULATORY SURGERY. 2473 01:51:21,453 --> 01:51:23,722 BEING IN THE COMPANY OF THOSE IN 2474 01:51:23,722 --> 01:51:24,356 HEALTH CARE IS SOMETHING I'M 2475 01:51:24,356 --> 01:51:28,827 WELL ACCUSTOMED TO BUT I 2476 01:51:28,827 --> 01:51:31,897 INTENTIONALLY CHOSE NOT TO 2477 01:51:31,897 --> 01:51:34,433 OBTAIN AN ADVANCED NURSING 2478 01:51:34,433 --> 01:51:34,666 DEGREE. 2479 01:51:34,666 --> 01:51:36,668 I WAS A CAREGIVER FOR MY MOTHER 2480 01:51:36,668 --> 01:51:39,304 STARTING AT THE AGE OF 22 AFTER 2481 01:51:39,304 --> 01:51:40,505 I GRADUATED COLLEGE UNTIL SHE 2482 01:51:40,505 --> 01:51:43,675 PASSED IN AUGUST OF 2021. 2483 01:51:43,675 --> 01:51:45,110 I WILL BE THE THIRD KNOWN 2484 01:51:45,110 --> 01:51:48,947 GENERATION IN MY FAMILY AFFECTED 2485 01:51:48,947 --> 01:51:51,183 BY BEHAVIORAL VARIANT FTD AS A 2486 01:51:51,183 --> 01:51:52,818 KNOWN MAP 2 MUTATION CARRIER. 2487 01:51:52,818 --> 01:51:54,953 FOLLOWING MY GENERATION, THERE 2488 01:51:54,953 --> 01:51:57,222 ARE SIX CHILDREN IN THE NEXT WHO 2489 01:51:57,222 --> 01:52:02,427 ARE NOW ALL FACING 50/50 ODDS OF 2490 01:52:02,427 --> 01:52:06,465 BEING FLAGGED, IN OTHER WORDS, 2491 01:52:06,465 --> 01:52:10,168 GENETIC FTD WILL CONTINUE TO 2492 01:52:10,168 --> 01:52:13,238 DESTROY GENERATIONS OF FTD UNTIL 2493 01:52:13,238 --> 01:52:15,374 THERE'S SOMETHING DONE TO STOP 2494 01:52:15,374 --> 01:52:15,774 IT. 2495 01:52:15,774 --> 01:52:16,742 FTD HAS BEEN A CURSE ON MY 2496 01:52:16,742 --> 01:52:20,512 FAMILY SINCE THE TIME I WAS 2497 01:52:20,512 --> 01:52:20,712 BORN. 2498 01:52:20,712 --> 01:52:23,215 MY GRANDMOTHER STARTED 2499 01:52:23,215 --> 01:52:24,583 EXHIBITING SYMPTOMS OF FTD AND 2500 01:52:24,583 --> 01:52:26,518 LANGUISHED FOR THE DISEASE WITH 2501 01:52:26,518 --> 01:52:27,953 15 YEARS UNTIL 2006. 2502 01:52:27,953 --> 01:52:30,055 JUST THREE YEARS AFTER MY 2503 01:52:30,055 --> 01:52:32,090 GRANDMOTHER PASSED, MY MOTHER, 2504 01:52:32,090 --> 01:52:33,025 ALLISON'S BRAIN STARTED TO 2505 01:52:33,025 --> 01:52:36,161 CHANGE AT THE AGE OF 50. 2506 01:52:36,161 --> 01:52:38,096 DESPITE A FAMILY HISTORY AND 2507 01:52:38,096 --> 01:52:40,632 DAUGHTER WORKING IN THE MEDICAL 2508 01:52:40,632 --> 01:52:44,136 FIELD, IT TOOK US EIGHT YEARS TO 2509 01:52:44,136 --> 01:52:51,176 GAIN A DIAGNOSIS OF FTD IN 2018. 2510 01:52:51,176 --> 01:52:53,178 MY MOTHER PASSED IN 2022 AFTER 2511 01:52:53,178 --> 01:52:57,382 12 YEARS OF THIS DISEASE. 2512 01:52:57,382 --> 01:52:58,550 TO DATE MY GRANDMOTHER BEVERLY 2513 01:52:58,550 --> 01:53:01,320 AND ALL FOUR OF HER CHILDREN 2514 01:53:01,320 --> 01:53:04,623 RECEIVED DIAGNOSIS OF BEHAVIORAL 2515 01:53:04,623 --> 01:53:08,193 VARIANT FTD WITH CONFIRMED 2516 01:53:08,193 --> 01:53:10,262 GENETIC PINNINGS. 2517 01:53:10,262 --> 01:53:12,931 ONCE MY MOTHER AS A FIGHT ENDED, 2518 01:53:12,931 --> 01:53:19,338 I RECEIVE D MY RESULTS AND GOT 2519 01:53:19,338 --> 01:53:21,440 CONFIRMATION THE FAMILIAL CURSE 2520 01:53:21,440 --> 01:53:23,475 LIVES IN ME AND NOW POSSIBLY 2521 01:53:23,475 --> 01:53:25,043 BOTH OF MY DAUGHTERS. 2522 01:53:25,043 --> 01:53:28,246 I WAS TOO LATE TO SPARE THEM. 2523 01:53:28,246 --> 01:53:29,848 MY SISTERS THEN PROCEED WITH 2524 01:53:29,848 --> 01:53:31,283 THEIR OWN GENETIC TESTING 2525 01:53:31,283 --> 01:53:32,250 THEREAFTER AND THEIR RESULTS 2526 01:53:32,250 --> 01:53:34,319 MATCHED MINE. 2527 01:53:34,319 --> 01:53:34,586 POSITIVE. 2528 01:53:34,586 --> 01:53:36,254 WHICH MEANS ALL SIX OF THOSE 2529 01:53:36,254 --> 01:53:38,290 CHILDREN IN THE PICTURES ON THE 2530 01:53:38,290 --> 01:53:40,625 LEFT ARE ALL FACING THE GENETIC 2531 01:53:40,625 --> 01:53:42,561 COIN TOSS THAT COMES WITH 2532 01:53:42,561 --> 01:53:44,463 AUTOSOMAL DOMINANT DISEASES. 2533 01:53:44,463 --> 01:53:45,897 THE CHILDREN ARE ABOUT WHAT 2534 01:53:45,897 --> 01:53:48,033 GIVES ME THE TIRELESS ENERGY TO 2535 01:53:48,033 --> 01:53:51,303 CONTINUE TO FIGHT. 2536 01:53:51,303 --> 01:53:53,305 SOMETIMES I WONDER IF IT WOULD 2537 01:53:53,305 --> 01:53:56,908 BE EASIER TO PRETEND I DON'T 2538 01:53:56,908 --> 01:53:58,143 KNOW WHAT THE FUTURE LOOKS LIKE 2539 01:53:58,143 --> 01:53:59,845 AND IT'S THE DECISIONS WE MAKE 2540 01:53:59,845 --> 01:54:01,380 TODAY TO FUND TOMORROW TO 2541 01:54:01,380 --> 01:54:11,790 DETERMINE THEIR FUTURE. 2542 01:54:12,758 --> 01:54:15,293 THERE'S MORE TO DO SO IT'S 2543 01:54:15,293 --> 01:54:16,161 EASILY RECOGNIZED AND DIAGNOSED 2544 01:54:16,161 --> 01:54:19,231 WITH THOSE FIRST COMING INTO 2545 01:54:19,231 --> 01:54:21,099 CONTACT WITH PATIENTS. 2546 01:54:21,099 --> 01:54:22,801 HETEROGENEITY MAKES IT 2547 01:54:22,801 --> 01:54:27,439 DIAGNOSTICALLY CHALLENGING IT 2548 01:54:27,439 --> 01:54:28,273 TAKES OVER THREE YEARS AFTER 2549 01:54:28,273 --> 01:54:29,841 SYMPTOMS START TO GAIN A CORRECT 2550 01:54:29,841 --> 01:54:30,375 DIAGNOSIS. 2551 01:54:30,375 --> 01:54:32,811 WHICH MEANS THE ATROPHY HAD 2552 01:54:32,811 --> 01:54:34,413 ALREADY BEEN OCCURRING THREE 2553 01:54:34,413 --> 01:54:38,250 YEARS PRIOR TOE THAT FOR FIRST 2554 01:54:38,250 --> 01:54:38,483 SYSTEM. 2555 01:54:38,483 --> 01:54:40,051 WITH FTD BEING A YOUNGER ONSET 2556 01:54:40,051 --> 01:54:41,286 DISEASE AFFECTING A PERSON IN 2557 01:54:41,286 --> 01:54:43,789 THE PRIME OF THEIR ADULT LIFE, 2558 01:54:43,789 --> 01:54:44,656 THERE'S SIGNIFICANT CHALLENGES 2559 01:54:44,656 --> 01:54:48,260 THE PERSON AND FAMILY FACES. 2560 01:54:48,260 --> 01:54:49,761 LEGAL ISSUES WITH GAINING PROPER 2561 01:54:49,761 --> 01:54:50,495 CONTROL OVER THE INDIVIDUAL 2562 01:54:50,495 --> 01:54:53,565 WHILE STILL MAINTAINING THEIR 2563 01:54:53,565 --> 01:54:54,399 AUTONOMY, ECONOMIC ISSUES WITH 2564 01:54:54,399 --> 01:54:57,702 ASSETS, THE IMPACT ON THE ENTIRE 2565 01:54:57,702 --> 01:54:59,471 FAMILY AS SOMEONE TYPICALLY 2566 01:54:59,471 --> 01:55:00,505 RAISING DEPENDENT CHILDREN AND 2567 01:55:00,505 --> 01:55:01,773 PROVIDING INCOME FOR THEIR 2568 01:55:01,773 --> 01:55:02,007 FAMILY. 2569 01:55:02,007 --> 01:55:04,009 THERE'S A VERY APPARENT LACK OF 2570 01:55:04,009 --> 01:55:06,011 AWARENESS IN THE PUBLIC EYE AND 2571 01:55:06,011 --> 01:55:08,480 EVEN WITH MANY HEALTH 2572 01:55:08,480 --> 01:55:09,147 PRACTITIONERS, STATING SYMPTOMS 2573 01:55:09,147 --> 01:55:12,384 LIKE EXECUTIVE REASONING 2574 01:55:12,384 --> 01:55:19,324 IMPAIRMENT, DISINHIBITION AND 2575 01:55:19,324 --> 01:55:20,859 OTHER SYMPTOMS NO ONE KNOWS AND 2576 01:55:20,859 --> 01:55:24,196 HARD TO DESCRIBE WITHOUT SHOWING 2577 01:55:24,196 --> 01:55:26,431 AN EXAMPLE AS EACH SPECIFIC 2578 01:55:26,431 --> 01:55:28,567 PERSON OWN DISINHIBITION MAY NOT 2579 01:55:28,567 --> 01:55:31,203 LOOK THE SAME AS SOMEONE ELSE'S. 2580 01:55:31,203 --> 01:55:33,038 SO WE ON THE FTD SUBCOMMITTEE 2581 01:55:33,038 --> 01:55:34,473 FOR THE NEXT SET OF MILESTONES 2582 01:55:34,473 --> 01:55:38,443 HAVE A HUGE UNDERTAKING FOR 2583 01:55:38,443 --> 01:55:39,578 CONSIDERATIONS. 2584 01:55:39,578 --> 01:55:41,480 IT'S NOT JUST NEEDING DIAGNOSTIC 2585 01:55:41,480 --> 01:55:42,781 MEASURES AND TREATMENTS, WE ALSO 2586 01:55:42,781 --> 01:55:43,982 HAVE TO FIGURE OUT WHAT'S 2587 01:55:43,982 --> 01:55:45,250 CAUSING THE DISEASE. 2588 01:55:45,250 --> 01:55:46,785 WHERE'S IT HAPPENING AND WHAT 2589 01:55:46,785 --> 01:55:49,187 TYPES OF THERAPIES A PERSON CAN 2590 01:55:49,187 --> 01:55:50,422 BE A PART OF. 2591 01:55:50,422 --> 01:55:51,857 ARE THEY SEEING THE CORRECT 2592 01:55:51,857 --> 01:55:53,058 PRACTITIONER AS WELL AS FINDING 2593 01:55:53,058 --> 01:55:54,693 WAYS TO UNDERSTAND THE DISEASE 2594 01:55:54,693 --> 01:55:56,461 TO THEN IMPLEMENT THE MILESTONES 2595 01:55:56,461 --> 01:56:03,502 TO BE SUCCESSFUL. 2596 01:56:03,502 --> 01:56:05,270 AT THIS TIME I WANTED TO GIVE A 2597 01:56:05,270 --> 01:56:05,904 SPECIFIC MENTION OF GRATITUDE 2598 01:56:05,904 --> 01:56:08,373 AND THANKS FOR ALL THE THINGS 2599 01:56:08,373 --> 01:56:11,743 THE NIA, NIH AND NINDS HAS 2600 01:56:11,743 --> 01:56:12,277 FUNDED. 2601 01:56:12,277 --> 01:56:13,845 I'VE BEEN GIVEN THE GIFT OF 2602 01:56:13,845 --> 01:56:17,549 BEING ABLE TO PARTICIPATE IN 2603 01:56:17,549 --> 01:56:19,217 RESEARCH THE LAST FOUR YEARS. 2604 01:56:19,217 --> 01:56:21,720 THAT'S FOUR YEARS OF IMAGING 2605 01:56:21,720 --> 01:56:23,288 I'VE BEEN ABLE TO OBTAIN WITHOUT 2606 01:56:23,288 --> 01:56:23,688 COST. 2607 01:56:23,688 --> 01:56:26,424 THESE STUDIES HAVE PROVIDED ME 2608 01:56:26,424 --> 01:56:28,860 THE OPTION TO GET A BASELINE MRI 2609 01:56:28,860 --> 01:56:30,262 STARTING AT THE AGE OF 32. 2610 01:56:30,262 --> 01:56:32,230 THE ONE PIECE THAT COULD HAVE 2611 01:56:32,230 --> 01:56:35,467 DRASTICALLY ALTERED GETTING MY 2612 01:56:35,467 --> 01:56:37,402 MOM DIAGNOSED SOONER AND TESTING 2613 01:56:37,402 --> 01:56:38,436 AND COGNITIVE TESTING AND 2614 01:56:38,436 --> 01:56:40,038 FURTHER IMAGING. 2615 01:56:40,038 --> 01:56:41,006 EVERY TIME GIVING ME THE 2616 01:56:41,006 --> 01:56:42,374 VALIDATION THINGS ARE STABLE 2617 01:56:42,374 --> 01:56:51,950 RIGHT NOW. 2618 01:56:51,950 --> 01:56:57,188 IT'S TERRIFYING THE STUDIES ARE 2619 01:56:57,188 --> 01:56:59,491 IN JEOPARDY. 2620 01:56:59,491 --> 01:57:01,793 THERE WAS LACK OF SCIENTIFIC 2621 01:57:01,793 --> 01:57:03,228 DISCOVERY HOWEVER, AFTER THE 2622 01:57:03,228 --> 01:57:06,398 LAST THREE YEARS OF TRYING TO 2623 01:57:06,398 --> 01:57:09,334 UNDERSTAND EVERYTHING DISCOVERY 2624 01:57:09,334 --> 01:57:10,435 ENTAIL I'VE CHANGED FROM 2625 01:57:10,435 --> 01:57:14,205 FRUSTRATION TO AWE. 2626 01:57:14,205 --> 01:57:15,774 LEARNING HOW EACH RESEARCHER'S 2627 01:57:15,774 --> 01:57:19,578 WORK PROVIDES A PIECE TO THE 2628 01:57:19,578 --> 01:57:21,913 PUZZLE TO DISCOVERY CREATED 2629 01:57:21,913 --> 01:57:22,581 PROFOUND GRATITUDE FOR THE WORK 2630 01:57:22,581 --> 01:57:23,682 EVERYONE ON THE CALL IS DOING. 2631 01:57:23,682 --> 01:57:25,917 THIS IS A COMMUNITY FIGHT. 2632 01:57:25,917 --> 01:57:36,461 NOT A SINGLE INDIVIDUAL'S QUEST. 2633 01:57:36,962 --> 01:57:38,330 I REALIZE HOW MANY ALLIES ARE 2634 01:57:38,330 --> 01:57:42,434 FIGHTING FOR WHAT I'M FIGHTING, 2635 01:57:42,434 --> 01:57:43,702 AN END TO THESE DISEASE. 2636 01:57:43,702 --> 01:57:45,837 THANK YOU FOR YOUR TENACITY AND 2637 01:57:45,837 --> 01:57:46,171 DETERMINATION. 2638 01:57:46,171 --> 01:57:47,372 I FEEL HONORED TO BE A MEMBER OF 2639 01:57:47,372 --> 01:57:48,340 THIS GROUP. 2640 01:57:48,340 --> 01:57:50,909 WHEN I WAS FIRST ASKED TO SERVE 2641 01:57:50,909 --> 01:57:53,211 AS THE PWLE ON THE COMMITTEE I 2642 01:57:53,211 --> 01:57:55,447 WAS QUITE TERRIFIED TO BE THE 2643 01:57:55,447 --> 01:57:56,948 SOLE VOICE OF MY COMMUNITY. 2644 01:57:56,948 --> 01:57:58,984 I HAD SEVERE IMPOSTER SYNDROME 2645 01:57:58,984 --> 01:58:01,653 AND QUESTIONED IF I WAS THE 2646 01:58:01,653 --> 01:58:02,320 RIGHT CHOICE. 2647 01:58:02,320 --> 01:58:05,290 I KNEW IF I HAD TO ENSURE THAT 2648 01:58:05,290 --> 01:58:09,127 MY VOICE SERVED AS THE VOICE AND 2649 01:58:09,127 --> 01:58:11,229 REPRESENTATIVE OF THE WHOLE FTD 2650 01:58:11,229 --> 01:58:11,496 COMMUNITY. 2651 01:58:11,496 --> 01:58:12,964 WITHIN MY ADVOCACY WORK, I 2652 01:58:12,964 --> 01:58:18,403 TYPICALLY HAVE A TARGETED FOCUS 2653 01:58:18,403 --> 01:58:19,971 ON GENETIC FTD BUT THIS REQUIRED 2654 01:58:19,971 --> 01:58:26,444 ME TO HAVE A UNIFIED VOICE, 2655 01:58:26,444 --> 01:58:27,712 FAMILIAL, SPORADIC AND GENETIC 2656 01:58:27,712 --> 01:58:32,617 AND I SENT MULTIPLE E-MAILS IN 2657 01:58:32,617 --> 01:58:35,954 THE FTD COMMUNITY TO MAKE SURE I 2658 01:58:35,954 --> 01:58:37,255 UNDERSTOOD MY ROLE AND GET 2659 01:58:37,255 --> 01:58:40,692 FEEDBACK FOR TOP PRIORITIES AND 2660 01:58:40,692 --> 01:58:40,992 MILESTONES. 2661 01:58:40,992 --> 01:58:41,893 THOUGH MY VOICE WAS THE ONE 2662 01:58:41,893 --> 01:58:42,827 HEARD IN THE DISCUSSIONS IN THE 2663 01:58:42,827 --> 01:58:45,096 LAST MONTHS, I WAS THE MEGA 2664 01:58:45,096 --> 01:58:50,135 PHONE FOR OUR COMMUNITY MEMBERS. 2665 01:58:50,135 --> 01:58:52,737 ONE OF THE BLARING SHARED 2666 01:58:52,737 --> 01:58:54,439 MESSAGE IS WE NEED DIAGNOSTIC 2667 01:58:54,439 --> 01:58:55,473 TOOLS AND BIOMARKERS AND 2668 01:58:55,473 --> 01:58:59,878 TREATMENTS AND THERAPIES AS THE 2669 01:58:59,878 --> 01:59:01,813 FIRST, HIGHEST, TOP PRIORITY. 2670 01:59:01,813 --> 01:59:04,215 AS SOMEONE WHO WATCHED THE 2671 01:59:04,215 --> 01:59:05,884 DEBILITATING DISEASE DESTROY A 2672 01:59:05,884 --> 01:59:07,452 PERSON'S LIFE I WAS IN ABSOLUTE 2673 01:59:07,452 --> 01:59:07,719 AGREEMENT. 2674 01:59:07,719 --> 01:59:08,853 AS A COMMUNITY, WE NEED TO 2675 01:59:08,853 --> 01:59:13,258 DEVELOP WAYS TO MORE EASILY 2676 01:59:13,258 --> 01:59:14,759 DIAGNOSIS FTD AND THE SUB TYPES 2677 01:59:14,759 --> 01:59:17,095 AND WAYS TO DETERMINE WHICH 2678 01:59:17,095 --> 01:59:18,129 UNDERLYING PATHOLOGY WE'RE 2679 01:59:18,129 --> 01:59:21,366 WORKING WITH AND THEN WE NEED TO 2680 01:59:21,366 --> 01:59:24,502 FIND A WAY TO TREAT THIS DISEASE 2681 01:59:24,502 --> 01:59:26,237 WHETHER IT'S CURATE OR SYMPTOM 2682 01:59:26,237 --> 01:59:27,806 MANAGEMENT BUT TRYING TO SOLVE 2683 01:59:27,806 --> 01:59:30,675 THE PROBLEM IS OF THE HIGHEST 2684 01:59:30,675 --> 01:59:31,009 PRIORITY. 2685 01:59:31,009 --> 01:59:32,243 BECAUSE ISN'T THAT TRULY WHAT 2686 01:59:32,243 --> 01:59:40,185 WE'RE ALL TRYING TO ACCOMPLISH? 2687 01:59:40,185 --> 01:59:43,521 AREN'T WE HERE TO FORMULATE WAYS 2688 01:59:43,521 --> 01:59:45,824 TO CURE THESE DISEASES? 2689 01:59:45,824 --> 01:59:49,427 I REORGANIZED THE MILESTONES OF 2690 01:59:49,427 --> 01:59:50,628 RENOWN CLINICIANS TO VOICE AN 2691 01:59:50,628 --> 01:59:53,098 OPINION I DIDN'T FEEL I HAD 2692 01:59:53,098 --> 01:59:53,431 EARNED. 2693 01:59:53,431 --> 01:59:55,400 AFTER SUGGESTING A REORDERING TO 2694 01:59:55,400 --> 01:59:57,068 SET A PRECEDENT OF DIAGNOSTICS 2695 01:59:57,068 --> 01:59:59,471 AND TREATMENTS AS THE HIGHEST 2696 01:59:59,471 --> 02:00:01,372 PRIORITY, DO WANT TO KNOW WHAT 2697 02:00:01,372 --> 02:00:02,440 HAPPENED? 2698 02:00:02,440 --> 02:00:04,142 THEY LISTENED. 2699 02:00:04,142 --> 02:00:06,745 NOT ONLY DID THEY LISTEN, THEY 2700 02:00:06,745 --> 02:00:09,414 AGREED AND THEY TOOK ACTION. 2701 02:00:09,414 --> 02:00:10,682 NOW, THE MILESTONES FOR FTD FOR 2702 02:00:10,682 --> 02:00:13,685 THE NEXT THREE YEARS REFLECT 2703 02:00:13,685 --> 02:00:16,721 THIS, NUMBER ONE, ACCELERATE THE 2704 02:00:16,721 --> 02:00:18,223 EVALUATION OF NOVEL FTD 2705 02:00:18,223 --> 02:00:19,157 TREATMENTS AND NUMBER TWO, 2706 02:00:19,157 --> 02:00:22,093 ADVANCE DEVELOPMENT OF AN ARRAY 2707 02:00:22,093 --> 02:00:24,529 OF STANDARDIZED BIOMARKERS IN 2708 02:00:24,529 --> 02:00:25,730 DIGITAL HEALTH TECHNOLOGY FOR 2709 02:00:25,730 --> 02:00:25,997 SCREENING. 2710 02:00:25,997 --> 02:00:27,365 THAT MOMENT WAS SOMETHING I WILL 2711 02:00:27,365 --> 02:00:28,032 NEVER FORGET. 2712 02:00:28,032 --> 02:00:30,435 TO BE VALIDATED IN A WAY THAT 2713 02:00:30,435 --> 02:00:32,937 BOLDLY DEMONSTRATED MY VOICE, MY 2714 02:00:32,937 --> 02:00:35,373 OPINION AND MY POSITION WITHIN 2715 02:00:35,373 --> 02:00:38,176 THIS SUBCOMMITTEE WAS JUST AS 2716 02:00:38,176 --> 02:00:39,911 VALUED AS EVERYONE ELSE'S. 2717 02:00:39,911 --> 02:00:42,514 FOR THAT I REALLY WANT TO THANK 2718 02:00:42,514 --> 02:00:44,048 THOSE WHO SERVE ON THE FTD 2719 02:00:44,048 --> 02:00:44,783 SUBCOMMITTEE FOR GIVING ME THE 2720 02:00:44,783 --> 02:00:46,651 OPPORTUNITY AND FOR YOUR 2721 02:00:46,651 --> 02:00:56,795 SUPPORT. 2722 02:00:58,429 --> 02:01:00,532 IT'S STILL MISUNDERSTOOD AND 2723 02:01:00,532 --> 02:01:02,934 UNDER DIAGNOSED AND UNDER FUNDED 2724 02:01:02,934 --> 02:01:05,937 AND FOR MANY STILL A MYSTERY. 2725 02:01:05,937 --> 02:01:07,438 WE NEED MOMENTUM IN SCIENCE, 2726 02:01:07,438 --> 02:01:08,473 CARE AND COMMUNITY AND EARLIER 2727 02:01:08,473 --> 02:01:09,808 DETECTION AND MORE TRIALS AND 2728 02:01:09,808 --> 02:01:11,309 SUPPORT FOR THE CAREGIVERS AND 2729 02:01:11,309 --> 02:01:13,011 ACCESS TO SPECIALISTS AND 2730 02:01:13,011 --> 02:01:14,445 THERAPIES THAT REFLECT THE 2731 02:01:14,445 --> 02:01:16,815 COMPLEXITY OF THIS DISEASE. 2732 02:01:16,815 --> 02:01:18,449 THIS HOPE IS WHAT DRIVES ME TO 2733 02:01:18,449 --> 02:01:21,052 PUSH BOUNDARIES AND SEEK ANSWERS 2734 02:01:21,052 --> 02:01:22,720 AND SUPPORT OTHERS ON THE 2735 02:01:22,720 --> 02:01:22,954 JOURNEY. 2736 02:01:22,954 --> 02:01:25,790 IT IS A HOPE ROOTED IN SCIENCE, 2737 02:01:25,790 --> 02:01:27,725 NURTURED BY COMMUNITY AND 2738 02:01:27,725 --> 02:01:30,895 PROPELLED BY UNWAVERING 2739 02:01:30,895 --> 02:01:31,229 DETERMINATION. 2740 02:01:31,229 --> 02:01:32,964 HOPE IS THE FIGHT. 2741 02:01:32,964 --> 02:01:37,302 THE RELENTLESS PUSH FORWARD 2742 02:01:37,302 --> 02:01:38,336 UNTIL THERE'S NOTHING LEFT TO 2743 02:01:38,336 --> 02:01:39,137 PUSH. 2744 02:01:39,137 --> 02:01:40,138 I'M AWARE OF THE REALITY THERE'S 2745 02:01:40,138 --> 02:01:41,773 NO GUARANTEE THERE WILL BE A 2746 02:01:41,773 --> 02:01:44,309 TREATMENT IN TIME TO SAVE ME BUT 2747 02:01:44,309 --> 02:01:45,410 WITH THE INTELLIGENCE AND 2748 02:01:45,410 --> 02:01:47,078 DETERMINATION I SAW IN THIS 2749 02:01:47,078 --> 02:01:51,082 COMMITTEE, I KNOW THAT MY 2750 02:01:51,082 --> 02:01:51,816 DAUGHTERS WILL BE GIVEN OPTION 2751 02:01:51,816 --> 02:01:53,151 AND AN OPPORTUNITY FOR A 2752 02:01:53,151 --> 02:01:53,818 DIFFERENT FUTURE. 2753 02:01:53,818 --> 02:01:54,586 ONE THEY WON'T HAVE TO FIGHT SO 2754 02:01:54,586 --> 02:01:58,356 HARD FOR. 2755 02:01:58,356 --> 02:01:59,691 MAY WE ALL CONTINUE TO KEEP 2756 02:01:59,691 --> 02:02:00,725 FILING FOR THE NEXT GENERATION. 2757 02:02:00,725 --> 02:02:02,227 THANK YOU. 2758 02:02:02,227 --> 02:02:02,961 -- FIGHTING FOR THE NEXT 2759 02:02:02,961 --> 02:02:03,261 GENERATION. 2760 02:02:03,261 --> 02:02:06,431 THANK YOU. 2761 02:02:06,431 --> 02:02:06,497 2762 02:02:40,865 --> 02:02:44,535 >> DO YOU WARRANT TO -- WANT TO 2763 02:02:44,535 --> 02:02:55,013 TAKE US IN THE NEXT SESSION? 2764 02:02:56,247 --> 02:02:58,750 >> I'D LIKE TO WELCOME YOU ALL 2765 02:02:58,750 --> 02:03:03,454 ON BEHALF OF MY CO-CHAIR, I'M 2766 02:03:03,454 --> 02:03:04,522 CELESTE KARCH. 2767 02:03:04,522 --> 02:03:09,694 WE JUST HEARD BEAUTIFULLY FROM 2768 02:03:09,694 --> 02:03:20,238 LINDY ABOUT THE REAL JOURNEY AND 2769 02:03:20,738 --> 02:03:22,440 COMPLEX DIAGNOSIS. 2770 02:03:22,440 --> 02:03:24,676 WHEN WE THINK OF FRONTAL 2771 02:03:24,676 --> 02:03:28,813 TEMPORAL DEMENTIA WE'RE THINKING 2772 02:03:28,813 --> 02:03:30,615 ABOUT THE COMPLEX SET OF 2773 02:03:30,615 --> 02:03:33,384 SYMPTOMS THAT CAN PRESENT IN 2774 02:03:33,384 --> 02:03:43,895 THREE MAJOR WAYS AND THEY'RE 2775 02:03:56,808 --> 02:04:00,645 MEDICAL TERMS AND WHAT WE SEE IS 2776 02:04:00,645 --> 02:04:05,116 THAT THE REAL WAY IN WHICH 2777 02:04:05,116 --> 02:04:07,218 PATIENTS ARE COMING INTO THE 2778 02:04:07,218 --> 02:04:09,020 CLINICS IS WITH CLINICAL 2779 02:04:09,020 --> 02:04:10,455 PRESENTATIONS MORE COMPLEX THAN 2780 02:04:10,455 --> 02:04:12,790 THESE THREE VERY BROAD 2781 02:04:12,790 --> 02:04:15,026 CATEGORIES OF CLINICAL 2782 02:04:15,026 --> 02:04:16,627 PRESENTATIONS THAT BOTH 2783 02:04:16,627 --> 02:04:19,497 INCORPORATE THE KEY FEATURES AS 2784 02:04:19,497 --> 02:04:22,834 WELL AS CAPTURE ASPECTS OF 2785 02:04:22,834 --> 02:04:23,401 PARKINSON'S OR ALZHEIMER'S 2786 02:04:23,401 --> 02:04:28,139 DISEASE OR EVEN ALS. 2787 02:04:28,139 --> 02:04:31,609 AND SO THIS COMPLEX CLINICAL 2788 02:04:31,609 --> 02:04:33,344 PRESENTATION OF FTD REALLY 2789 02:04:33,344 --> 02:04:37,882 REQUIRES WE PUT FORTH INNOVATIVE 2790 02:04:37,882 --> 02:04:39,550 APPROACHES TO DIAGNOSE AND 2791 02:04:39,550 --> 02:04:40,885 MONITOR THE PROGRESSION OF 2792 02:04:40,885 --> 02:04:43,755 DISEASE AND FIGURE OUT WHICH 2793 02:04:43,755 --> 02:04:46,424 TREATMENT BEST FOR WHICH FORMS 2794 02:04:46,424 --> 02:04:50,428 OF DISEASE. 2795 02:04:50,428 --> 02:04:53,998 NOT JUST IN THE CLINIC BUT IF WE 2796 02:04:53,998 --> 02:04:56,367 GO BACK TO THE MOLECULAR CAUSES 2797 02:04:56,367 --> 02:04:59,771 OF DISEASE WE'RE REMINDED FTD IS 2798 02:04:59,771 --> 02:05:02,373 AN UMBRELLA TERM THAT REPRESENTS 2799 02:05:02,373 --> 02:05:04,275 SEVERAL DIFFERENT SUB TYPES. 2800 02:05:04,275 --> 02:05:07,645 THEY'RE INITIATED BY A NUMBER OF 2801 02:05:07,645 --> 02:05:11,015 DIFFERENT GENES IN FAMILIAL 2802 02:05:11,015 --> 02:05:16,487 FORMS LIKE T THESE AND ULTIMATEY 2803 02:05:16,487 --> 02:05:19,957 WHETHER SPORADIC OR FAMILIAL IT 2804 02:05:19,957 --> 02:05:21,225 CAN LEAD TO DIFFERENT TYPES OF 2805 02:05:21,225 --> 02:05:23,194 PATHOLOGY THAT ACCUMULATES IN 2806 02:05:23,194 --> 02:05:26,297 DISEASE AND IN THE BRAIN. 2807 02:05:26,297 --> 02:05:30,301 SO WE MUST CONSIDER THESE AS 2808 02:05:30,301 --> 02:05:32,503 WE'RE DEVELOPING THE TREATMENTS 2809 02:05:32,503 --> 02:05:34,972 AND EVEN THE DIAGNOSES TO DEFINE 2810 02:05:34,972 --> 02:05:37,308 IN THE CLINIC WHICH SUB TYPE AN 2811 02:05:37,308 --> 02:05:47,819 INDIVIDUAL PRESENTS ITSELF AS. 2812 02:05:47,819 --> 02:05:49,687 ULTIMATELY THE RECOMMENDATIONS 2813 02:05:49,687 --> 02:05:51,923 YOU'LL HEAR ABOUT IN THE SESSION 2814 02:05:51,923 --> 02:05:56,894 ARE REALLY BUILDING OFF THE 2815 02:05:56,894 --> 02:06:00,631 URGENT NEEDS TO BE ABLE TO 2816 02:06:00,631 --> 02:06:02,166 DIAGNOSIS FTD AND TO UNDERSTAND 2817 02:06:02,166 --> 02:06:05,136 OF THE SUB TYPES AND EFFECTIVELY 2818 02:06:05,136 --> 02:06:06,437 MANAGE AND ASSIGN THE BEST 2819 02:06:06,437 --> 02:06:10,441 TREATMENT FOR THE SUB TYPES. 2820 02:06:10,441 --> 02:06:13,444 AND IN ORDER TO DO THIS WE STILL 2821 02:06:13,444 --> 02:06:14,479 NEED TO UNDERSTAND THE 2822 02:06:14,479 --> 02:06:15,713 FUNDAMENTAL MECHANISMS THAT 2823 02:06:15,713 --> 02:06:16,614 DRIVE DISEASE AND WORK ACROSS 2824 02:06:16,614 --> 02:06:18,950 THE MODALITIES FROM THE PATIENT 2825 02:06:18,950 --> 02:06:22,453 POPULATIONS ALL THE WAY INTO OUR 2826 02:06:22,453 --> 02:06:23,287 MODEL SYSTEMS AND BACK AGAIN. 2827 02:06:23,287 --> 02:06:25,723 AND THESE MILESTONES AND 2828 02:06:25,723 --> 02:06:27,859 RECOMMENDATIONS ARE REALLY BUILT 2829 02:06:27,859 --> 02:06:30,495 OFF WHAT IS AN EXCEEDINGLY 2830 02:06:30,495 --> 02:06:33,531 EXCITING TIME IN THE FTD FIELD 2831 02:06:33,531 --> 02:06:35,199 WHERE WE'RE GETTING AT NEW 2832 02:06:35,199 --> 02:06:36,968 BIOMARKERS, NEW MECHANISMS, NEW 2833 02:06:36,968 --> 02:06:40,571 MODELS AND THOSE I THINK ARE ALL 2834 02:06:40,571 --> 02:06:42,874 A REFLECTION OF THE SUPPORT THAT 2835 02:06:42,874 --> 02:06:46,477 CAME FROM THE LAST SUMMIT'S 2836 02:06:46,477 --> 02:06:48,646 RECOMMENDATIONS AND THESE NEW 2837 02:06:48,646 --> 02:06:50,414 RECOMMENDATIONS YOU'LL HEAR ARE 2838 02:06:50,414 --> 02:06:52,750 REALLY A REFLECTION OF WHERE 2839 02:06:52,750 --> 02:06:57,455 WE'RE AT AND WHERE WE CAN GO TO 2840 02:06:57,455 --> 02:06:57,955 MEANINGFULLY TREAT THIS 2841 02:06:57,955 --> 02:07:00,625 DEVASTATING DISEASE. 2842 02:07:00,625 --> 02:07:10,902 I'LL STOP THERE. 2843 02:07:14,572 --> 02:07:18,109 WE CAN GO ON TO DR. BOXER. 2844 02:07:18,109 --> 02:07:20,244 >> DR. BOXER: THANK YOU FOR 2845 02:07:20,244 --> 02:07:21,879 INVITING ME TO SPEAK TODAY. 2846 02:07:21,879 --> 02:07:24,615 I'M GOING TO TALK TO YOU ABOUT 2847 02:07:24,615 --> 02:07:25,049 THE FIRST AND FIFTH 2848 02:07:25,049 --> 02:07:34,425 RECOMMENDATIONS. 2849 02:07:34,425 --> 02:07:37,395 HERE'S MY DISCLOSURES. 2850 02:07:37,395 --> 02:07:38,429 SO THE FIRST RECOMMENDATION THAT 2851 02:07:38,429 --> 02:07:42,133 OUR COMMITTEE CAME UP WITH IS TO 2852 02:07:42,133 --> 02:07:43,000 ACCELERATE THE EVALUATION OF 2853 02:07:43,000 --> 02:07:45,937 NOVEL FTD TREATMENTS BY BOTH 2854 02:07:45,937 --> 02:07:47,338 CAPITALIZING ON EXISTING 2855 02:07:47,338 --> 02:07:48,005 EVIDENCE, INFRASTRUCTURE AND 2856 02:07:48,005 --> 02:07:54,412 RESOURCES AND ON THE DEVELOPMENT 2857 02:07:54,412 --> 02:07:57,515 OF FTD SPECIFIC DESIGNS AND NEW 2858 02:07:57,515 --> 02:07:59,517 PREVENTION AND TREATMENT TRIALS 2859 02:07:59,517 --> 02:08:00,885 REPRESENTATIVE OF THE 2860 02:08:00,885 --> 02:08:02,753 U.S. POPULATION AND IT'S TOP 2861 02:08:02,753 --> 02:08:04,755 PRIORITY AND YOU HEARD FROM 2862 02:08:04,755 --> 02:08:05,690 LINDE JACOBS JUST NOW HOW 2863 02:08:05,690 --> 02:08:06,557 IMPORTANT IT IS TO OUR 2864 02:08:06,557 --> 02:08:13,831 COMMUNITIES. 2865 02:08:13,831 --> 02:08:14,599 SO IMPORTANT TO MENTION THERE 2866 02:08:14,599 --> 02:08:18,436 ARE NO APPROVED TREATMENTS FOR 2867 02:08:18,436 --> 02:08:26,010 FTD IN ANY FORM. 2868 02:08:26,010 --> 02:08:29,213 AND RIGHT NOW WE'RE LIMITED AS 2869 02:08:29,213 --> 02:08:31,482 PHYSICIAN TO USE 2870 02:08:31,482 --> 02:08:34,418 NON-PHARMACOLOGIC APPROACHES AND 2871 02:08:34,418 --> 02:08:35,386 SYMPTOMATIC TREATMENTS WITH 2872 02:08:35,386 --> 02:08:36,787 PSYCHIATRIC MEDICATIONS BUT 2873 02:08:36,787 --> 02:08:40,124 DON'T HAVE ANYTHING TO SLOW THE 2874 02:08:40,124 --> 02:08:40,825 INEXTRICABLE COURSE OF THIS 2875 02:08:40,825 --> 02:08:41,492 DISEASE TOWARDS SEVERE 2876 02:08:41,492 --> 02:08:42,426 DISABILITY AND DEATH IN MANY 2877 02:08:42,426 --> 02:08:50,167 PEOPLE. 2878 02:08:50,167 --> 02:08:52,169 DESPITE THIS AN EXCITING TIME 2879 02:08:52,169 --> 02:08:56,607 FOR THE DEVELOPMENT OF TREATMENT 2880 02:08:56,607 --> 02:09:00,645 FOR NEURAL DEGENERATIVE DISEASES 2881 02:09:00,645 --> 02:09:04,448 AND SEEN IN SOD 1 ALS IT'S 2882 02:09:04,448 --> 02:09:06,417 POSSIBLE TO DEVELOP DISEASE 2883 02:09:06,417 --> 02:09:08,486 MODIFYING DRUGS TO SLOW 2884 02:09:08,486 --> 02:09:09,387 PROGRESSION OF DISEASE AND HAVE 2885 02:09:09,387 --> 02:09:10,955 AN IMPORTANT IMPACT OF SURVIVAL. 2886 02:09:10,955 --> 02:09:14,425 WE CAN LEARN FROM THE EXPERIENCE 2887 02:09:14,425 --> 02:09:20,231 AND BRING THIS TO FTD. 2888 02:09:20,231 --> 02:09:23,200 WE'RE ALSO SEEING IN OTHER 2889 02:09:23,200 --> 02:09:26,604 DISEASES TAU AND TDP43 2890 02:09:26,604 --> 02:09:27,238 TREATMENTS ARE BEING DEVELOPED 2891 02:09:27,238 --> 02:09:29,573 TO INTO AND THE CLINIC AND MAY 2892 02:09:29,573 --> 02:09:33,611 BE WE CAN ALSO TEST THEM FOR 2893 02:09:33,611 --> 02:09:34,211 OVED. 2894 02:09:34,211 --> 02:09:37,248 THEY MAY ALSO WORK BETTER THAN 2895 02:09:37,248 --> 02:09:40,384 FOR OTHER NEUROGENE RATIVE 2896 02:09:40,384 --> 02:09:40,685 DISEASES. 2897 02:09:40,685 --> 02:09:41,919 I WANT TO ACKNOWLEDGE THE 2898 02:09:41,919 --> 02:09:43,554 SUPPORT FROM THE NATIONAL 2899 02:09:43,554 --> 02:09:44,722 INSTITUTE ON AGING AND 2900 02:09:44,722 --> 02:09:46,557 NEUROLOGICAL DISORDERS AND 2901 02:09:46,557 --> 02:09:50,027 STROKE FOR THE ALL FTD RESEARCH 2902 02:09:50,027 --> 02:09:53,597 NETWORK AND THE FTD DISORDERS 2903 02:09:53,597 --> 02:09:57,268 REGISTRY WHICH HAS BUILT THE 2904 02:09:57,268 --> 02:09:58,803 INFRASTRUCTURE THROUGHOUT NORTH 2905 02:09:58,803 --> 02:09:59,904 AMERICA TO SUPPORT THE NEXT 2906 02:09:59,904 --> 02:10:04,241 GENERATION OF FTD TRIALS. 2907 02:10:04,241 --> 02:10:06,410 THIS IS A BIT OF A BUSY CHART 2908 02:10:06,410 --> 02:10:12,783 AND WANT TO ILLUSTRATE TO YOU 2909 02:10:12,783 --> 02:10:14,418 USING ALZHEIMER'S DISEASE AND 2910 02:10:14,418 --> 02:10:16,620 SOD-1 RELATED ALS AS DISEM 2911 02:10:16,620 --> 02:10:27,365 PARTICULARS -- EXEMPLARS AND 2912 02:10:28,766 --> 02:10:31,769 IT'S PROVEN VIABLE FOR THE 2913 02:10:31,769 --> 02:10:32,169 INDICATIONS. 2914 02:10:32,169 --> 02:10:32,970 IN FRONTOTEMPORAL DEMENTIA WHAT 2915 02:10:32,970 --> 02:10:35,239 YOU CAN SEE IS THERE ARE REALLY 2916 02:10:35,239 --> 02:10:35,906 TWO FORMS. 2917 02:10:35,906 --> 02:10:39,543 THOSE LINKED TO GOOD MORNINGS OR 2918 02:10:39,543 --> 02:10:42,813 FAMILIAL FTD AND SPORADIC FORMS 2919 02:10:42,813 --> 02:10:45,916 OF FRONTOTEMPORAL DEMENTIA 2920 02:10:45,916 --> 02:10:46,250 DEGENERATION. 2921 02:10:46,250 --> 02:10:48,519 YOU CAN SEE IN THE RIGHT IN BLUE 2922 02:10:48,519 --> 02:10:49,820 ARE HOW FAR DRUG DEVELOPMENT HAS 2923 02:10:49,820 --> 02:10:53,157 MADE IT IN CLINICAL TRIALS FOR 2924 02:10:53,157 --> 02:10:54,492 THESE VARIOUS DIFFERENT FORMS OF 2925 02:10:54,492 --> 02:10:54,725 FTD. 2926 02:10:54,725 --> 02:10:56,394 AND HOPEFULLY WHAT YOU CAN 2927 02:10:56,394 --> 02:10:58,529 NOTICE IT'S THE AVAILABILITY OF 2928 02:10:58,529 --> 02:11:01,665 BIOMARKERS AND YOU'LL HEAR ABOUT 2929 02:11:01,665 --> 02:11:02,867 THIS IN IN THE NEXT 2930 02:11:02,867 --> 02:11:04,935 RECOMMENDATION THAT'S REALLY 2931 02:11:04,935 --> 02:11:06,437 ALLOWED THE DEVELOPMENT OF THESE 2932 02:11:06,437 --> 02:11:11,709 CLINICAL TRIALS. 2933 02:11:11,709 --> 02:11:13,844 AS WE THINK OF THE NEXT FIVE 2934 02:11:13,844 --> 02:11:17,281 YEARS OF THE FTD NETWORK WE'RE 2935 02:11:17,281 --> 02:11:18,783 FOCUSSING ON PREPARING FOR 2936 02:11:18,783 --> 02:11:19,550 CLINICAL TRIALS AND DEVELOPING 2937 02:11:19,550 --> 02:11:21,619 MORE BIOMARKERS AND MORE TOOLS 2938 02:11:21,619 --> 02:11:23,254 TO DO CLINICAL TRIALS THROUGHOUT 2939 02:11:23,254 --> 02:11:29,960 THE FIRST SPECTRUM OF FTD. 2940 02:11:29,960 --> 02:11:31,328 SO WHAT OTHER ADVANCES HAVE 2941 02:11:31,328 --> 02:11:41,272 HAPPENED SINCE THE LAST SUMMIT? 2942 02:11:41,272 --> 02:11:43,007 IMPORTANTLY WE'RE EXCITED THE 2943 02:11:43,007 --> 02:11:45,075 FIRST TRIAL RESULTS WERE 2944 02:11:45,075 --> 02:11:47,011 REPORTED EARLIER THIS YEAR AND 2945 02:11:47,011 --> 02:11:49,547 THIS WAS WITH A SYMPTOMATIC 2946 02:11:49,547 --> 02:11:51,048 AGENT THAT REALLY SEEMS TO HAVE 2947 02:11:51,048 --> 02:11:54,418 AN IMPORTANT IMPACT ON THE 2948 02:11:54,418 --> 02:11:56,687 SYMPTOMS OF BEHAVIORAL VARIANT 2949 02:11:56,687 --> 02:11:56,854 FTD. 2950 02:11:56,854 --> 02:12:00,758 THIS IS INTRANASAL OXYTOCIN FOR 2951 02:12:00,758 --> 02:12:00,925 FTD. 2952 02:12:00,925 --> 02:12:04,161 WE'VE ALSO SEEN IN PROGRANULIN 2953 02:12:04,161 --> 02:12:07,198 RELATED FTD THAT GENE THERAPY 2954 02:12:07,198 --> 02:12:12,069 WITH INTRAFECALLY ADMINISTERED 2955 02:12:12,069 --> 02:12:15,739 VIRAL VECTOR PROGRANULIN CAN 2956 02:12:15,739 --> 02:12:18,876 CORRECT THE CHEMICAL ASSOCIATED 2957 02:12:18,876 --> 02:12:24,482 WITH A PROGRANULIN MUTATION AND 2958 02:12:24,482 --> 02:12:26,417 AWAITING THE RESULTS OF THE 2959 02:12:26,417 --> 02:12:26,884 TRIALS. 2960 02:12:26,884 --> 02:12:29,286 THERE'S OTHER THERAPIES OTHER 2961 02:12:29,286 --> 02:12:29,487 WAY. 2962 02:12:29,487 --> 02:12:31,956 OUR CLINICAL TRIAL PROGRAMS 2963 02:12:31,956 --> 02:12:32,223 UNDERWAY. 2964 02:12:32,223 --> 02:12:34,425 AND AGAIN I JUST WANT TO REMIND 2965 02:12:34,425 --> 02:12:35,993 YOU THAT WE ARE BUILDING UPON 2966 02:12:35,993 --> 02:12:39,830 AND STARTING TO BRING SOME DRUGS 2967 02:12:39,830 --> 02:12:41,966 FROM OTHER INDICATIONS INTO FTD 2968 02:12:41,966 --> 02:12:42,633 AND I'LL TELL YOU ABOUT THIS IN 2969 02:12:42,633 --> 02:12:52,810 A MINUTE. 2970 02:12:53,477 --> 02:12:55,646 ONE IDEA AND THIS IS NOW 2971 02:12:55,646 --> 02:12:58,415 HAPPENING IN ALS BECAUSE WE KNOW 2972 02:12:58,415 --> 02:13:02,419 CERTAIN FORMS OF FTD INDIVIDUALS 2973 02:13:02,419 --> 02:13:04,121 HAVE MUTATIONS THAT PUT THEM AT 2974 02:13:04,121 --> 02:13:07,591 RISK FOR DISEASE, WE MAY BE ABLE 2975 02:13:07,591 --> 02:13:09,827 TO DESIGN PREVENTION TRIALS 2976 02:13:09,827 --> 02:13:10,861 WHERE WE INITIATE TREATMENT 2977 02:13:10,861 --> 02:13:13,430 PRIOR TO THE ONSET OF SYMPTOMS. 2978 02:13:13,430 --> 02:13:17,001 OVER THE PAST YEAR, RESEARCHERS 2979 02:13:17,001 --> 02:13:19,036 FROM THE ALS AND FTD COMMUNITIES 2980 02:13:19,036 --> 02:13:22,406 HAVE MET TO BEGIN PLANNING THE 2981 02:13:22,406 --> 02:13:24,675 FIRST PREVENTION TRIALS OF FTD. 2982 02:13:24,675 --> 02:13:26,176 >> TWO-MINUTE WARNING. 2983 02:13:26,176 --> 02:13:30,915 >> WE ALSO ARE TAKING THE IDEA 2984 02:13:30,915 --> 02:13:34,084 OF PLASTER PROTOCOLS NEW TRIAL 2985 02:13:34,084 --> 02:13:36,887 DESIGN AND FUNDED BY THE 2986 02:13:36,887 --> 02:13:38,422 NATIONAL INSTITUTES OF HEALTH. 2987 02:13:38,422 --> 02:13:40,491 WE'RE BEGINNING LATER THIS YEAR 2988 02:13:40,491 --> 02:13:41,926 A NEW PLATFORM TRIAL FOR 2989 02:13:41,926 --> 02:13:42,459 PROGRESSIVE SUPER NUCLEAR 2990 02:13:42,459 --> 02:13:50,434 POLICY. 2991 02:13:50,434 --> 02:13:52,870 THE IDEA OF A PERFORM TRIAL IS A 2992 02:13:52,870 --> 02:13:56,140 COST AND RAPID WAY TO TEST NEW 2993 02:13:56,140 --> 02:13:59,343 TREATMENT OR TO DEVELOP NEW 2994 02:13:59,343 --> 02:14:00,911 TREATMENTS FOR A DISEASE. 2995 02:14:00,911 --> 02:14:02,813 WHAT YOU SEE IS THE DESIGN OF 2996 02:14:02,813 --> 02:14:07,284 THE NEW PSP TRIAL PLATFORM. 2997 02:14:07,284 --> 02:14:09,787 IN THIS TRIAL WE WILL BE TESTING 2998 02:14:09,787 --> 02:14:14,425 THREE DIFFERENT DRUGS FOR PSP 2999 02:14:14,425 --> 02:14:15,025 SIMULTANEOUSLY. 3000 02:14:15,025 --> 02:14:16,393 INDIVIDUALS WILL BE RANDOMIZED 3001 02:14:16,393 --> 02:14:18,128 TO ONE OF THE THREE DRUG 3002 02:14:18,128 --> 02:14:19,930 REGIMENTS AND WITHIN EACH 3003 02:14:19,930 --> 02:14:22,733 REGIMENT, THEY ARE HAVE A 3-1 3004 02:14:22,733 --> 02:14:23,500 CHANCE OF RECEIVING THE DRUG. 3005 02:14:23,500 --> 02:14:25,936 ONE OF THE EFFICIENCIES IS WE 3006 02:14:25,936 --> 02:14:29,673 CAN PULL THE PLACEBO SO WE CAN 3007 02:14:29,673 --> 02:14:33,544 TEST DRUGS MORE QUICKLY WITH 3008 02:14:33,544 --> 02:14:38,148 FEWER PATIENTS HAVING TO BE 3009 02:14:38,148 --> 02:14:43,621 EXPOSED TO PLACEBO AND THIS WILL 3010 02:14:43,621 --> 02:14:44,622 CREATE A NEW RESOURCE FOR OTHER 3011 02:14:44,622 --> 02:14:46,991 INVESTIGATORS AROUND THE COUNTRY 3012 02:14:46,991 --> 02:14:48,726 TO DEVELOP NEW TREATMENTS AND 3013 02:14:48,726 --> 02:14:54,765 NEW BIOMARKERS FOR PSP. 3014 02:14:54,765 --> 02:14:58,402 NOW I'M GOING TO END WITH THE 3015 02:14:58,402 --> 02:14:59,837 FIFTH RECOMMENDATION, 3016 02:14:59,837 --> 02:15:04,174 RECOMMENDATION NUMBER 5, WHICH 3017 02:15:04,174 --> 02:15:09,213 IS TO UNDERSTAND FTD 3018 02:15:09,213 --> 02:15:12,816 MANIFESTATIONS AND HOW DISEASE 3019 02:15:12,816 --> 02:15:15,819 FACTORS LIKE HETEROGENEITY AND 3020 02:15:15,819 --> 02:15:17,054 SEX AND EXPOSOME AFFECT DISEASE 3021 02:15:17,054 --> 02:15:21,558 RISK AND CLINICAL MANIFESTATIONS 3022 02:15:21,558 --> 02:15:23,794 AND THE LIVED EXPERIENCE OF FTD. 3023 02:15:23,794 --> 02:15:26,563 IT'S IMPORTANT TO MENTION THE 3024 02:15:26,563 --> 02:15:27,831 CLINICAL DIAGNOSTIC CRITERIA WE 3025 02:15:27,831 --> 02:15:29,199 USED ARE BASED ON STUDIES OF 3026 02:15:29,199 --> 02:15:31,702 INDIVIDUALS WITH ACCESS TO 3027 02:15:31,702 --> 02:15:34,271 SPECIALIZED CARE MOSTLY IN NORTH 3028 02:15:34,271 --> 02:15:36,874 AMERICA AND IN EUROPE. 3029 02:15:36,874 --> 02:15:41,145 BUT WHAT WE'RE LEARNING IS THAT 3030 02:15:41,145 --> 02:15:42,112 THERE ARE SPECIFIC GENETIC 3031 02:15:42,112 --> 02:15:43,747 AFFECTS THAT MAY BE IMPORTANT 3032 02:15:43,747 --> 02:15:46,550 FOR CAUSING FTD. 3033 02:15:46,550 --> 02:15:54,158 SO FOR THE MAJOR AUTOSOMAL 3034 02:15:54,158 --> 02:15:56,894 DOMINANT FOR FAMILIAL GENE WE 3035 02:15:56,894 --> 02:16:00,564 THINK THIS AROSE IN SCANDINAVIA 3036 02:16:00,564 --> 02:16:09,873 AND PROGRANULIN IN MEDITERRANEAN 3037 02:16:09,873 --> 02:16:12,176 FAMILIES AND OTHER CAUSES FOR 3038 02:16:12,176 --> 02:16:15,679 EXAMPLE IN EAST ASIA ANXA11 3039 02:16:15,679 --> 02:16:18,415 MUTATION A MORE IMPORTANT CAUSE 3040 02:16:18,415 --> 02:16:21,118 OF FTD. 3041 02:16:21,118 --> 02:16:22,419 THEY'RE ALL IMPORTANT AND 3042 02:16:22,419 --> 02:16:23,087 POTENTIALLY IMPORTANT BIOMARKER 3043 02:16:23,087 --> 02:16:27,991 TO DEVELOP NEW TLAPIES. 3044 02:16:27,991 --> 02:16:30,561 WE ALSO KNOW FOR TAUOPATHIES 3045 02:16:30,561 --> 02:16:33,197 THERE'S A GENETIC FACTOR RELATED 3046 02:16:33,197 --> 02:16:36,533 TO TAU CALLED THE H2 ALLELE 3047 02:16:36,533 --> 02:16:38,602 WHICH PROTECTS BUT IS A RISK 3048 02:16:38,602 --> 02:16:40,637 FACTOR FOR ANOTHER DISEASE. 3049 02:16:40,637 --> 02:16:42,873 IT'S NOT PRESENT IN ASIAN 3050 02:16:42,873 --> 02:16:44,875 ANCESTRIES. 3051 02:16:44,875 --> 02:16:46,410 AGAIN, IT'S SOMETHING THAT 3052 02:16:46,410 --> 02:16:48,879 SUGGESTS WE SHOULD BE 3053 02:16:48,879 --> 02:16:49,546 UNDERSTANDING THE EPIDEMIOLOGY 3054 02:16:49,546 --> 02:16:51,348 AND GENETICS OF FTD THROUGHOUT 3055 02:16:51,348 --> 02:16:53,884 THE WORLD BECAUSE IT MAY HELP 3056 02:16:53,884 --> 02:16:58,822 DEVELOP NEW TREATMENTS. 3057 02:16:58,822 --> 02:17:02,426 FINALLY AGAIN, WE ARE 3058 02:17:02,426 --> 02:17:03,293 INCREASINGLY COLLABORATING WITH 3059 02:17:03,293 --> 02:17:05,362 OUR ALS COLLEAGUES IN THE ALL 3060 02:17:05,362 --> 02:17:06,430 ALS RESEARCH NETWORK. 3061 02:17:06,430 --> 02:17:10,434 ONE THING WE LEARNED FROM ALS IS 3062 02:17:10,434 --> 02:17:11,702 THE EXPOSOME SO THE 3063 02:17:11,702 --> 02:17:14,438 ENVIRONMENTAL RISK FACTORS AND 3064 02:17:14,438 --> 02:17:15,072 POTENTIALLY TOXIN IN THE 3065 02:17:15,072 --> 02:17:17,941 ENVIRONMENT ARE LIKELY TO BE 3066 02:17:17,941 --> 02:17:20,110 IMPORTANT FOR ALS AND 3067 02:17:20,110 --> 02:17:22,279 INCREASINGLY WE'RE LEARNING IT'S 3068 02:17:22,279 --> 02:17:24,615 IMPORTANT FOR FTD SO WE NEED TO 3069 02:17:24,615 --> 02:17:27,484 FOCUS ON THIS IN COLLABORATION 3070 02:17:27,484 --> 02:17:28,385 WITH OUR ALS COLLEAGUES IN THE 3071 02:17:28,385 --> 02:17:30,420 FUTURE. 3072 02:17:30,420 --> 02:17:37,928 THANK YOU. 3073 02:17:37,928 --> 02:17:40,297 >> THANK YOU. 3074 02:17:40,297 --> 02:17:42,432 GOOD AFTERNOON, EVERYONE. 3075 02:17:42,432 --> 02:17:47,237 DAVID IRWIN FROM THE UNIVERSITY 3076 02:17:47,237 --> 02:17:48,138 OF PENNSYLVANIA. 3077 02:17:48,138 --> 02:17:53,777 I'LL BE PRESENTING ON BEHALF OF 3078 02:17:53,777 --> 02:17:55,846 THE SUBCOMMITTEE ON THE 3079 02:17:55,846 --> 02:17:58,715 ADVANCING FTD BIOMARKERS TO 3080 02:17:58,715 --> 02:18:02,119 DISENTANGLE THE FTD CLINICO 3081 02:18:02,119 --> 02:18:05,556 PATHOLOGICAL HETEROGENEITY. 3082 02:18:05,556 --> 02:18:07,291 TO START, THE VAST HETEROGENEITY 3083 02:18:07,291 --> 02:18:09,726 OF FTD FROM A CLINICAL AND 3084 02:18:09,726 --> 02:18:11,929 PATHOLOGICAL PERSPECTIVE POSES A 3085 02:18:11,929 --> 02:18:14,198 SIGNIFICANT OBSTACLE IN TERMS OF 3086 02:18:14,198 --> 02:18:16,533 NOMENCLATURE AND BIOLOGICAL 3087 02:18:16,533 --> 02:18:19,303 CLASSIFICATION OF FTD AND THE 3088 02:18:19,303 --> 02:18:22,206 DESIGN AND IMPLEMENTATION OF THE 3089 02:18:22,206 --> 02:18:22,973 MECHANISTIC AND TREATMENT 3090 02:18:22,973 --> 02:18:24,408 STRATEGIES WHICH IS THE FOCUS OF 3091 02:18:24,408 --> 02:18:27,277 OUR SUBCOMMITTEE AS WE HEARD 3092 02:18:27,277 --> 02:18:33,383 FROM THE POWERFUL TALK BY LINDE. 3093 02:18:33,383 --> 02:18:36,286 WHAT THERE'S PHOTO MICROGRAPHS 3094 02:18:36,286 --> 02:18:40,858 OF THE ASSOCIATED PATHOLOGIES 3095 02:18:40,858 --> 02:18:46,396 CAN BE FOUND MICROSCOPICALLY 3096 02:18:46,396 --> 02:18:50,701 POSTMORTEM BY THE PROTEINS THAT 3097 02:18:50,701 --> 02:18:54,438 AGGREGATE IN THE BRAIN CELLS AND 3098 02:18:54,438 --> 02:19:01,011 THERE'S TAU PROTEINS AND FTLD 3099 02:19:01,011 --> 02:19:06,416 AND OTHER PROTEINOPATHIES AND 3100 02:19:06,416 --> 02:19:08,886 PRIMARY ALZHEIMER'S DISEASE 3101 02:19:08,886 --> 02:19:10,654 CHANGE CAN PRESENT WITH FOCAL 3102 02:19:10,654 --> 02:19:12,956 CLINICAL SYNDROME WITHIN THE FTD 3103 02:19:12,956 --> 02:19:18,996 SYNDROME. 3104 02:19:18,996 --> 02:19:24,835 SO SUPER IMPOSING THE 3105 02:19:24,835 --> 02:19:28,672 PATHOLOGIES WE CAN SEE THE MAIN 3106 02:19:28,672 --> 02:19:32,943 FTD SYNDROMES COLOR CODED BY THE 3107 02:19:32,943 --> 02:19:34,444 FREQUENCY OF THE VARIOUS 3108 02:19:34,444 --> 02:19:35,879 PATHOLOGIES BELOW AND WHAT WE 3109 02:19:35,879 --> 02:19:37,814 SAW IN A PRIOR SLIDE. 3110 02:19:37,814 --> 02:19:41,785 YOU CAN SEE SOME SYNDROME SUCH 3111 02:19:41,785 --> 02:19:46,690 AS SUPRAPROGRESSIVE PALSY IS 3112 02:19:46,690 --> 02:19:49,760 PREDICTIVE AND THE VARIANT OF 3113 02:19:49,760 --> 02:19:53,263 FTD HAS VARIOUS TAU AND 3114 02:19:53,263 --> 02:19:54,932 PATHOLOGY COULD BE THE 3115 02:19:54,932 --> 02:19:56,266 UNDERLYING CAUSE. 3116 02:19:56,266 --> 02:19:58,435 AND WHAT WE SAW FROM DR. KARCH 3117 02:19:58,435 --> 02:20:00,837 EARLIER IS THESE SYNDROMES CAN 3118 02:20:00,837 --> 02:20:10,080 OVERLAP WITH EACH OTHER. 3119 02:20:10,080 --> 02:20:14,451 IT SETS THE RECOMMENDATION TO 3120 02:20:14,451 --> 02:20:18,255 ADVANCE THE DEVELOPMENT OF AN 3121 02:20:18,255 --> 02:20:19,990 ARRAY OF BIOMARKERS AND DIGITAL 3122 02:20:19,990 --> 02:20:23,527 HEALTH TECHNOLOGIES FOR MULTIPLE 3123 02:20:23,527 --> 02:20:26,363 USES TO AFFECT THE MAIN GOAL AND 3124 02:20:26,363 --> 02:20:28,398 PROBLEM OF THE CRITICAL 3125 02:20:28,398 --> 02:20:31,001 IMPORTANCE OF AN EARLY AND 3126 02:20:31,001 --> 02:20:32,436 ACCURATE DIAGNOSIS OF FTD. 3127 02:20:32,436 --> 02:20:35,505 THIS IS IMPORTANT FOR SCREENING 3128 02:20:35,505 --> 02:20:46,016 INDIVIDUALS AT RISK TO OBTAIN 3129 02:20:50,787 --> 02:20:53,724 RISKS AND IDENTIFYING BIOLOGICAL 3130 02:20:53,724 --> 02:20:55,759 CHANGES TO PREDICT 3131 02:20:55,759 --> 02:20:57,828 PHENOCONVERSION TO MANIFEST FTD 3132 02:20:57,828 --> 02:20:59,196 AND IN THE CONTEXT OF CLINICAL 3133 02:20:59,196 --> 02:21:01,565 TRIALS AND THE IMPORTANCE OF 3134 02:21:01,565 --> 02:21:03,367 DISEASE MONITORING, PATIENT 3135 02:21:03,367 --> 02:21:06,636 STRATIFICATION TO BIOLOGICAL SUB 3136 02:21:06,636 --> 02:21:09,306 GROUPS WITH HOMOGENEOUS BIOLOGY 3137 02:21:09,306 --> 02:21:12,075 AND ENHANCE POWER AND TOOLS TO 3138 02:21:12,075 --> 02:21:14,311 DETECT TARGET ENGAGEMENT FOR 3139 02:21:14,311 --> 02:21:14,911 ASSOCIATED PATHOLOGIES AS THE 3140 02:21:14,911 --> 02:21:17,714 OVER ALL RECOMMENDATION. 3141 02:21:17,714 --> 02:21:19,416 WE PRIORITIZE LOW COST AND 3142 02:21:19,416 --> 02:21:21,118 NON-INVASIVE MODALITIES. 3143 02:21:21,118 --> 02:21:22,953 THEY HELP FACILITATE SCREENING 3144 02:21:22,953 --> 02:21:24,388 AND DIAGNOSIS, PARTICULARLY IN 3145 02:21:24,388 --> 02:21:27,224 REMOTE AREAS THAT MAY NOT HAVE 3146 02:21:27,224 --> 02:21:30,060 ACCESS TO TERTIARY CARE TO HELP 3147 02:21:30,060 --> 02:21:34,765 EXPAND OUR ABILITY TO DIAGNOSE 3148 02:21:34,765 --> 02:21:39,302 EARLY AND REDUCE THE DELAY. 3149 02:21:39,302 --> 02:21:40,937 EMPHASIZE NATURAL HISTORY 3150 02:21:40,937 --> 02:21:42,439 STUDIES TO UNDERSTAND THE 3151 02:21:42,439 --> 02:21:44,141 BIOLOGY OF FTD AND THE 3152 02:21:44,141 --> 02:21:46,476 IMPORTANCE OF BRAIN DONATION TO 3153 02:21:46,476 --> 02:21:48,211 VALIDATE MARKERS TESTED AND 3154 02:21:48,211 --> 02:21:50,380 DEVELOPMENT AND PET IMAGING 3155 02:21:50,380 --> 02:21:52,682 MODALITIES TO HELP ACCELERATE 3156 02:21:52,682 --> 02:21:56,553 OUR ABILITY TO CROSS VALIDATE. 3157 02:21:56,553 --> 02:21:58,188 WE OBSERVED IN ALZHEIMER'S 3158 02:21:58,188 --> 02:21:59,556 DISEASE WHERE AUTOPSIES ARE THEN 3159 02:21:59,556 --> 02:22:03,827 TO ABLE CROSS-VALIDATE EMERGING 3160 02:22:03,827 --> 02:22:06,463 BIO FLUID BIOMARKERS RATHER THAN 3161 02:22:06,463 --> 02:22:11,835 TO RELY ON AUTOPSY ALONE. 3162 02:22:11,835 --> 02:22:13,904 AS WE MAKE GAINS IN THE AREAS 3163 02:22:13,904 --> 02:22:15,138 ACCORDING TO THE RECOMMENDATION 3164 02:22:15,138 --> 02:22:18,141 WE CAN PREPARE FOR BIOLOGICAL 3165 02:22:18,141 --> 02:22:18,942 FRAMEWORK AND CONSIDER HOW 3166 02:22:18,942 --> 02:22:20,010 BIOMARKER CLASSIFICATION EXISTS 3167 02:22:20,010 --> 02:22:24,481 WITH EXISTING AND EMERGING 3168 02:22:24,481 --> 02:22:26,183 STRATEGIES FOR ALZHEIMER'S 3169 02:22:26,183 --> 02:22:30,454 DISEASE AND SYNUCLEIN MYOPATHIES 3170 02:22:30,454 --> 02:22:34,324 AND THE INITIATIVE. 3171 02:22:34,324 --> 02:22:37,727 TO BRIEFLY HIGHLIGHT SOME OF THE 3172 02:22:37,727 --> 02:22:40,464 ADVANCES SINCE THE LAST SUMMIT. 3173 02:22:40,464 --> 02:22:42,466 SOME HAVE BEEN IN BLOOD BRAIN 3174 02:22:42,466 --> 02:22:45,102 BARRIER BIOMARKERS AND 3175 02:22:45,102 --> 02:22:48,305 NEUROFILAMENT LIGHT CHAIN TO 3176 02:22:48,305 --> 02:22:50,407 DETERMINE EARLY BIOLOGICAL 3177 02:22:50,407 --> 02:22:52,609 CHANGES FOR INDIVIDUALS AT RISK 3178 02:22:52,609 --> 02:22:57,681 OF DEVELOPING CLINICALLY 3179 02:22:57,681 --> 02:22:59,783 MANIFESTING FTD AND UNDER GO 3180 02:22:59,783 --> 02:23:00,717 QUALIFICATIONS FOR THE USE IN 3181 02:23:00,717 --> 02:23:05,422 THE CONTEXT OF FAMILIAL FTD. 3182 02:23:05,422 --> 02:23:08,425 IN TERMS OF DIAGNOSING BIOLOGY 3183 02:23:08,425 --> 02:23:10,694 AND IDENTIFYING THOSE LIKELY TO 3184 02:23:10,694 --> 02:23:15,232 HAVE TAU OR TPD43 AND COMBINING 3185 02:23:15,232 --> 02:23:18,902 FILAMENT LIGHT WITH OTHER 3186 02:23:18,902 --> 02:23:19,536 BIOMARKERS SHOW PROMISING EARLY 3187 02:23:19,536 --> 02:23:25,542 RESULTS. 3188 02:23:25,542 --> 02:23:30,280 PHOSPHORYLATED TAU EPITOPES TO 3189 02:23:30,280 --> 02:23:31,047 DETECT PATHOLOGY IN THE CONTEXT 3190 02:23:31,047 --> 02:23:32,916 OF FTD WHICH IS IMPORTANT AND 3191 02:23:32,916 --> 02:23:34,918 ALSO IMPORTANT TO NOTE THE NEED 3192 02:23:34,918 --> 02:23:36,586 FOR FTD SPECIFIC BIOMARKERS TO 3193 02:23:36,586 --> 02:23:39,322 COMPLEMENT THESE IN THE ERA OF 3194 02:23:39,322 --> 02:23:41,291 AMYLOID THERAPIES. 3195 02:23:41,291 --> 02:23:44,227 NEWER TECHNIQUES SUCH AS MASS 3196 02:23:44,227 --> 02:23:47,497 SPEC TROSSCOPY TO LOOK AT 3197 02:23:47,497 --> 02:23:50,834 PRAGMENTS OF TAU AND PROTEOMIC 3198 02:23:50,834 --> 02:23:54,471 TECHNIQUES AND DERIVED EXTRA 3199 02:23:54,471 --> 02:23:57,807 CELLULAR VESICLES AND PET 3200 02:23:57,807 --> 02:24:00,911 TRACERS FOR FTLD FORMS OF TAI 3201 02:24:00,911 --> 02:24:03,947 AND TDP43 ARE UNDERWAY. 3202 02:24:03,947 --> 02:24:05,549 AND THE WAY TO INTEGRATE 3203 02:24:05,549 --> 02:24:07,884 BIOLOGICAL INDEXES AND 3204 02:24:07,884 --> 02:24:09,419 BIOMARKERS AND BUILD STATISTICAL 3205 02:24:09,419 --> 02:24:12,155 MODELS OF PROGRESSION ARE AN 3206 02:24:12,155 --> 02:24:18,461 IMPORTANT ADVANCE AND HELP GUIDE 3207 02:24:18,461 --> 02:24:19,062 CLINICAL TRIAL END POINTS AS 3208 02:24:19,062 --> 02:24:22,299 WELL. 3209 02:24:22,299 --> 02:24:24,868 A COMPLEMENTARY RECOMMENDATION 3210 02:24:24,868 --> 02:24:26,636 IS RECOMMENDATION 7 SO IDENTIFY 3211 02:24:26,636 --> 02:24:28,138 THE SHARED AND DISPARATE 3212 02:24:28,138 --> 02:24:30,740 MECHANISMS UNDERLYING THE 3213 02:24:30,740 --> 02:24:32,576 CLINICAL AND MOLECULAR SUB TYPES 3214 02:24:32,576 --> 02:24:35,512 INCLUSION OF CO-PATHOLOGIES AT 3215 02:24:35,512 --> 02:24:38,481 THE MOLECULAR, CELLULAR, CIRCUIT 3216 02:24:38,481 --> 02:24:40,984 AND TISSUE LEVELS. 3217 02:24:40,984 --> 02:24:42,052 THIS RECOMMENDATION IS FOCUSSED 3218 02:24:42,052 --> 02:24:47,624 ON COMPARATIVE STUDIES USING 3219 02:24:47,624 --> 02:24:48,692 HUMAN TISSUE AND DATA AND 3220 02:24:48,692 --> 02:24:50,827 TRANSLATE THE MECCISTIC STUDIES 3221 02:24:50,827 --> 02:24:53,296 WE'LL HEAR ABOUT IN CLINICAL 3222 02:24:53,296 --> 02:24:57,234 APPLICATION WITH AN EMPHASIS ON 3223 02:24:57,234 --> 02:24:58,301 IMPROVING AND INFORMING 3224 02:24:58,301 --> 02:25:01,071 RECRUITMENT STRATEGIES TARGETING 3225 02:25:01,071 --> 02:25:11,481 MOLECULAR MECHANISMS OF FTD. 3226 02:25:11,481 --> 02:25:12,449 FOR EXAMPLE COMPARING FEATURES 3227 02:25:12,449 --> 02:25:17,721 WITH FTD SUB TYPES WITH THE 3228 02:25:17,721 --> 02:25:18,455 COMMUNITY TO UNDERSTAND THE 3229 02:25:18,455 --> 02:25:21,358 BASIS FOR THE VARIOUS CLINICAL 3230 02:25:21,358 --> 02:25:26,796 EXPRESSION OF TDP43 3231 02:25:26,796 --> 02:25:29,633 PROTEINOPATHIES. 3232 02:25:29,633 --> 02:25:32,869 AND MORE CLEAR MECHANISMS AND 3233 02:25:32,869 --> 02:25:35,805 HOW THEY MAY RELATE TO THE 3234 02:25:35,805 --> 02:25:40,210 BIOLOGY OF SPORADIC OVEDs IS 3235 02:25:40,210 --> 02:25:46,449 ANOTHER HIGH PRIORITY. 3236 02:25:46,449 --> 02:25:47,817 AND PARTS OF THE BRAIN THAT 3237 02:25:47,817 --> 02:25:48,485 CONTRIBUTE TO LANGUAGE AND 3238 02:25:48,485 --> 02:25:50,353 SOCIAL BEHAVIOR AND STUDY THIS 3239 02:25:50,353 --> 02:25:54,291 IN THE CONTEXT OF HUMAN DISEASE 3240 02:25:54,291 --> 02:25:56,960 WE PRIORITIZE STANDARDIZING NEW 3241 02:25:56,960 --> 02:25:59,996 APPROACHES OF PATHOLOGY AND 3242 02:25:59,996 --> 02:26:01,831 INTERROGATE HUMAN BRAIN TISSUE 3243 02:26:01,831 --> 02:26:05,935 AND HOW TO INTEGRATE THESE TO 3244 02:26:05,935 --> 02:26:07,070 STUDY THE BIOLOGY IN THE CONTEXT 3245 02:26:07,070 --> 02:26:09,406 OF THE HUMAN BRAIN CONNECTOME 3246 02:26:09,406 --> 02:26:10,974 AND INTEGRATE OTHER MODEL 3247 02:26:10,974 --> 02:26:12,475 SYSTEMS FROM HUMAN DERIVED DATA 3248 02:26:12,475 --> 02:26:13,643 AND TISSUES. 3249 02:26:13,643 --> 02:26:17,113 THE OVER ALL ARCHING GOAL OF THE 3250 02:26:17,113 --> 02:26:18,448 PRIORITY WHICH IS A LONGER TERM 3251 02:26:18,448 --> 02:26:20,350 GOAL IS TO IDENTIFY THE NEURAL 3252 02:26:20,350 --> 02:26:22,719 SUBSTRATES AND MODULATING FACTOR 3253 02:26:22,719 --> 02:26:25,755 FOR DIFFERENT FTD SUB TYPES TO 3254 02:26:25,755 --> 02:26:28,158 IDENTIFY THERAPEUTIC TARGETS AND 3255 02:26:28,158 --> 02:26:28,792 OPTIMIZE THERAPEUTIC CLINICAL 3256 02:26:28,792 --> 02:26:34,964 TRIAL RECRUITMENT STRATEGIES. 3257 02:26:34,964 --> 02:26:37,067 I'LL BRIEFLY SUMMARIZE EXAMPLES 3258 02:26:37,067 --> 02:26:40,203 OF RECENT BIOLOGICAL SUB TYPES 3259 02:26:40,203 --> 02:26:46,443 DEPICTED ARE FINDING OF TDP43 3260 02:26:46,443 --> 02:26:54,451 TYPE C HAVING CONSISTENT ANXA11 3261 02:26:54,451 --> 02:27:01,925 PROTEINOPATHY AND A UNIQUE 3262 02:27:01,925 --> 02:27:05,595 FEATURE IS FILAMENT STRUCTURE. 3263 02:27:05,595 --> 02:27:08,264 AND EXCITING WORK LOOKING AT 3264 02:27:08,264 --> 02:27:18,475 CRYPTICEX -- CRYPTIC AM AXON 3265 02:27:18,475 --> 02:27:22,479 AND FLUIDS IN THE VARIOUS FORMS 3266 02:27:22,479 --> 02:27:24,681 OF PROTEINOPATHIES SHOW 3267 02:27:24,681 --> 02:27:26,449 POTENTIAL MECHANISMS AND FURTHER 3268 02:27:26,449 --> 02:27:28,585 UNDERSTANDING OF THE CELLULAR 3269 02:27:28,585 --> 02:27:29,753 AND TRANSCRIPTIONAL SUB TYPES 3270 02:27:29,753 --> 02:27:31,721 AND HOW THEY RELATE ARE 3271 02:27:31,721 --> 02:27:32,389 IMPORTANT. 3272 02:27:32,389 --> 02:27:34,691 USING DIGITAL PATHOLOGY TO 3273 02:27:34,691 --> 02:27:36,760 INTERROGATE BRAIN TISSUE AND 3274 02:27:36,760 --> 02:27:38,628 LOOKING AT CLINICALLY DEFINED 3275 02:27:38,628 --> 02:27:41,431 GROUP AND BEHAVIORAL VARIANT OF 3276 02:27:41,431 --> 02:27:47,070 FTD WE CAN STUD 3277 02:27:47,070 --> 02:27:48,605 NEURODEGENERATION IN BRAIN 3278 02:27:48,605 --> 02:27:52,108 PATTERNS AND CONNECTIVITY AND 3279 02:27:52,108 --> 02:27:58,448 FINALLY FINDINGS OF PROGRANULIN 3280 02:27:58,448 --> 02:28:06,322 AND HAPLO INSUFFICIENCY SUGGEST 3281 02:28:06,322 --> 02:28:07,190 AD/ADRD AND I'D LIKE TO THANK 3282 02:28:07,190 --> 02:28:08,358 OUR PATIENTS AND FAMILIES WHO 3283 02:28:08,358 --> 02:28:18,468 PARTICIPATE IN RESEARCH. 3284 02:28:18,468 --> 02:28:19,769 >> I'M BACK. 3285 02:28:19,769 --> 02:28:21,538 THIS IS CELESTE KARCH IN 3286 02:28:21,538 --> 02:28:24,274 ST. LOUIS AND I'LL BE SHARING 3287 02:28:24,274 --> 02:28:28,411 OUR RECOMMENDATIONS AND MODELS 3288 02:28:28,411 --> 02:28:31,581 AND MY DISCLOSURES ARE HERE. 3289 02:28:31,581 --> 02:28:38,455 I BRING YOU BACK TO THIS IDEA OF 3290 02:28:38,455 --> 02:28:40,557 THE WRESTLING WITH THE UMBRELLA 3291 02:28:40,557 --> 02:28:42,192 TERM WHILE KNOWING THERE'S BIG 3292 02:28:42,192 --> 02:28:45,328 CLEAR GENETIC CAUSE DIFFER 3293 02:28:45,328 --> 02:28:47,464 ACROSS THE DIFFERENT FTD SUB 3294 02:28:47,464 --> 02:28:48,998 TYPES AND AMONG THE NON-GENETIC 3295 02:28:48,998 --> 02:28:52,902 FORMS THE SPORADIC FORMS THERE'S 3296 02:28:52,902 --> 02:28:55,438 DIFFERENT AS RESPECTS OF 3297 02:28:55,438 --> 02:29:00,844 MOLECULAR PATHOLOGY THAT AFFECTS 3298 02:29:00,844 --> 02:29:04,247 THE PHENOTYPE WE SEE WHEN 3299 02:29:04,247 --> 02:29:13,156 PATIENTS COME REPORT IING ISSUE. 3300 02:29:13,156 --> 02:29:17,293 AS WE THINK OF MODELLING 3301 02:29:17,293 --> 02:29:18,161 DISEASE, PERHAPS THE TRADITIONAL 3302 02:29:18,161 --> 02:29:23,533 THOUGHT IS SORT OF TO MODEL THE 3303 02:29:23,533 --> 02:29:25,201 CELL BASIS OF DISEASE AND WHILE 3304 02:29:25,201 --> 02:29:28,137 THAT'S IMPORTANT THE COMMITTEE 3305 02:29:28,137 --> 02:29:30,540 WANTED TO EMPHASIZE THAT MODELS 3306 02:29:30,540 --> 02:29:32,141 REALLY WILL BE VALUABLE TO 3307 02:29:32,141 --> 02:29:35,411 CAPTURE EVERY LEVEL OF THE 3308 02:29:35,411 --> 02:29:38,448 ASPECTS OF FTD FROM THE GENETIC 3309 02:29:38,448 --> 02:29:40,984 AND PATH LOGIC FEATURES AND ALSO 3310 02:29:40,984 --> 02:29:42,418 THINKING ABOUT WAYS TO 3311 02:29:42,418 --> 02:29:43,319 EFFECTIVELY MODEL THE CLINICAL 3312 02:29:43,319 --> 02:29:53,563 PRESENTATIONS. 3313 02:30:01,471 --> 02:30:03,640 I WANT TO SHOW THE RECENT WORK 3314 02:30:03,640 --> 02:30:04,674 IN THE LITERATURE THAT SHOW THE 3315 02:30:04,674 --> 02:30:06,643 VALUE OF MODELS AND THE VALUE OF 3316 02:30:06,643 --> 02:30:08,444 INTEGRATIVE MODELS AND I 3317 02:30:08,444 --> 02:30:14,217 APOLOGIZE FOR THE BLURRINESS OF 3318 02:30:14,217 --> 02:30:17,854 THIS PICTURE AND WHAT'S EMERGED 3319 02:30:17,854 --> 02:30:19,289 FROM STUDIES FROM TWO 3320 02:30:19,289 --> 02:30:21,257 INDEPENDENT ROLES IS THERE'S A 3321 02:30:21,257 --> 02:30:26,462 ROLE FOR TDP43 IN ALTERING 3322 02:30:26,462 --> 02:30:31,134 SPECIFIC TRANSCRIPTS THAT 3323 02:30:31,134 --> 02:30:33,536 PRODUCE WHAT IS TERMED CRYPTIC 3324 02:30:33,536 --> 02:30:35,805 AXON WE HEARD FROM DR. IRWIN 3325 02:30:35,805 --> 02:30:39,208 THAT CAN TELL US ABOUT THE 3326 02:30:39,208 --> 02:30:43,146 BIOLOGY OF DISEASE AND 3327 02:30:43,146 --> 02:30:45,582 POTENTIALLY SERVE AS BIOMARKERS. 3328 02:30:45,582 --> 02:30:46,516 WHAT THE COMPANION PAPERS SHOWED 3329 02:30:46,516 --> 02:30:50,553 US IS WE CAN GET AT THE IDEAS 3330 02:30:50,553 --> 02:30:55,024 THROUGH VERY DIFFERENT 3331 02:30:55,024 --> 02:30:56,593 APPROACHES TO MODELS. 3332 02:30:56,593 --> 02:30:57,827 IN THE FIRST STUDY STEM CELL 3333 02:30:57,827 --> 02:31:02,832 MODELS WERE USED WHERE A WELL 3334 02:31:02,832 --> 02:31:03,733 CHARACTERIZED POTENT STEM CELL 3335 02:31:03,733 --> 02:31:09,205 LINE WAS MANIPULATED TO REMOVE 3336 02:31:09,205 --> 02:31:10,807 TDP43 AND SUBSEQUENT ANALYSIS OF 3337 02:31:10,807 --> 02:31:17,747 THE NEURONS REVEALED THIS CHANGE 3338 02:31:17,747 --> 02:31:22,251 IN IN A PARTICULAR GENE IN 13A 3339 02:31:22,251 --> 02:31:24,187 WHICH HAD ALTERED CRYPTIC AXONS. 3340 02:31:24,187 --> 02:31:26,623 IN A PARALLEL APPROACH 3341 02:31:26,623 --> 02:31:29,859 INVESTIGATORS WERE ABLE TO TAKE 3342 02:31:29,859 --> 02:31:31,928 HUMAN BRAIN TISSUE FROM PEOPLE 3343 02:31:31,928 --> 02:31:34,464 WHO HAVE FTD AND WERE ABLE TO 3344 02:31:34,464 --> 02:31:37,166 ISOLATE NEURONS FROM THE BRAINS 3345 02:31:37,166 --> 02:31:38,434 AND ASK WHAT'S THERE, WHAT'S 3346 02:31:38,434 --> 02:31:40,069 DIFFERENT AND HOW DOES THAT 3347 02:31:40,069 --> 02:31:41,571 COMPARE TO NORMAL CONTROL BRAINS 3348 02:31:41,571 --> 02:31:44,440 AND AGAIN THEY WERE ABLE TO SEE 3349 02:31:44,440 --> 02:31:48,378 THIS CHANGE IN A GENE ONC 13A IN 3350 02:31:48,378 --> 02:31:49,145 GENERATIONS IN THE SPLICING. 3351 02:31:49,145 --> 02:31:54,450 SO THIS REALLY HIGHLIGHTED THE 3352 02:31:54,450 --> 02:31:57,220 ADDED VALUE OF MOILING FROM 3353 02:31:57,220 --> 02:31:57,787 DIFFERENT PERSPECTIVES AND 3354 02:31:57,787 --> 02:32:03,693 DIFFERENT LEVELS. 3355 02:32:03,693 --> 02:32:05,662 IN DISCOVERY OF FUNDAMENTAL 3356 02:32:05,662 --> 02:32:07,964 MECHANISMS AND TO REVEAL NEW 3357 02:32:07,964 --> 02:32:10,700 BIOMARKERS AND THERAPEUTIC 3358 02:32:10,700 --> 02:32:20,443 TARGETS. 3359 02:32:20,443 --> 02:32:24,814 ANOTHER AREA OF MASSIVE GROWTH 3360 02:32:24,814 --> 02:32:27,450 HAS BEEN ABLE TO LEVERAGE CELLS 3361 02:32:27,450 --> 02:32:30,353 IN WAYS AND WHILE THE PRIOR 3362 02:32:30,353 --> 02:32:31,621 STUDY USED SYSTEM MODELS TO 3363 02:32:31,621 --> 02:32:33,623 REMOVE A GENE, THERE ARE EFFORTS 3364 02:32:33,623 --> 02:32:35,558 FOCUSSED ON TAKING CELLS FROM 3365 02:32:35,558 --> 02:32:41,130 PEOPLE WHO CARRY MUTATIONS THAT 3366 02:32:41,130 --> 02:32:42,231 CAUSE DISEASE LIKE THOSE LINDE 3367 02:32:42,231 --> 02:32:43,666 DESCRIBED AND TO MAKE THEM INTO 3368 02:32:43,666 --> 02:32:46,069 CELL TYPES IN THE BRAIN SUCH AS 3369 02:32:46,069 --> 02:32:47,336 BRAIN ORGANOIDS THAT DEVELOP IN 3370 02:32:47,336 --> 02:32:50,540 A MANNER THAT LOOKS LIKE THE 3371 02:32:50,540 --> 02:32:51,908 DEVELOPING BRAIN. 3372 02:32:51,908 --> 02:32:55,445 AND THEN TO TRACK HOW THESE 3373 02:32:55,445 --> 02:32:59,348 CHANGES OCCUR ORE HOW SPECIFIC 3374 02:32:59,348 --> 02:33:02,452 CHANGES OCCUR OVER TIME AND HOW 3375 02:33:02,452 --> 02:33:04,320 THEY COMPARE TO CELLS WHERE THE 3376 02:33:04,320 --> 02:33:06,189 GENETIC MUTATION HAS BEEN 3377 02:33:06,189 --> 02:33:06,456 CORRECTED. 3378 02:33:06,456 --> 02:33:07,824 ULTIMATELY THE EFFORTS HAVE LED 3379 02:33:07,824 --> 02:33:10,526 TO A REALLY BEAUTIFUL SET OF 3380 02:33:10,526 --> 02:33:13,663 PHENOTYPES THAT ARE CHANGING 3381 02:33:13,663 --> 02:33:17,667 OVER TIME AND CAN BE TARGETED. 3382 02:33:17,667 --> 02:33:19,469 IN ADDITION TO THAT THERE'S A 3383 02:33:19,469 --> 02:33:23,039 LOT OF GROUPS THAT HAVE MADE 3384 02:33:23,039 --> 02:33:25,208 HUGE HEADWINDS IN MAKING 3385 02:33:25,208 --> 02:33:26,442 FIBROBLASTS FROM PEOPLE WHO 3386 02:33:26,442 --> 02:33:30,446 CARRY DIFFERENT MUTATIONS OR ARE 3387 02:33:30,446 --> 02:33:32,148 CLINICALLY DIAGNOSED WITH FTDs 3388 02:33:32,148 --> 02:33:34,383 AND CONVERT THOSE FROM A SKIN 3389 02:33:34,383 --> 02:33:36,219 CELL INTO A NEURON AND THOSE ARE 3390 02:33:36,219 --> 02:33:39,655 ENABLED US TO BE ABLE TO BEGIN 3391 02:33:39,655 --> 02:33:43,226 TO VISUALIZE PROTEIN AGGREGATS 3392 02:33:43,226 --> 02:33:45,595 IN A WAY WE HAVEN'T BEFORE. 3393 02:33:45,595 --> 02:33:49,232 THIS ALLOWS US TO UNDERSTAND THE 3394 02:33:49,232 --> 02:33:51,200 BIOLOGY AND AGGREGATES IN WHICH 3395 02:33:51,200 --> 02:33:52,668 THEY ARE FORM AND HAVE TOOLS 3396 02:33:52,668 --> 02:33:56,139 NOW, CELL LINES WE CAN SCREEN 3397 02:33:56,139 --> 02:34:00,376 FOR COMPOUNDS THAT BLOCK OR 3398 02:34:00,376 --> 02:34:03,780 REDUCE THE FORMATION OF THE 3399 02:34:03,780 --> 02:34:06,616 AGGREGATES THAT CAN BE MOVED 3400 02:34:06,616 --> 02:34:07,583 INTO TRIALS. 3401 02:34:07,583 --> 02:34:11,154 WITH OF THE MANY EXAMPLES I'VE 3402 02:34:11,154 --> 02:34:21,631 SHOWN ARE REALLY ON EFFECTS 3403 02:34:22,231 --> 02:34:23,232 WITHIN NEURONS AND THE FTD FIELD 3404 02:34:23,232 --> 02:34:25,802 IS SEEING A LEVEL OF COMPLEXITY 3405 02:34:25,802 --> 02:34:28,304 ACROSS THE CELL TYPES THAT ARE 3406 02:34:28,304 --> 02:34:30,439 FOUND IN THE BRAIN THAT ARE 3407 02:34:30,439 --> 02:34:32,809 LIKELY CONTRIBUTING TO FTD AND 3408 02:34:32,809 --> 02:34:34,744 MODELS ARE BEGINNING TO POINT US 3409 02:34:34,744 --> 02:34:37,213 IN THIS DIRECTION BUT REMAINS AN 3410 02:34:37,213 --> 02:34:39,549 IMPORTANT AREA OF GROWTH AND 3411 02:34:39,549 --> 02:34:50,059 EMPHASIS IN THE COMING YEARS. 3412 02:34:52,195 --> 02:34:53,896 RECOMMENDATION 3 IS FOCUSSED ON 3413 02:34:53,896 --> 02:34:56,265 A NEED TO ESTABLISH AND VALIDATE 3414 02:34:56,265 --> 02:34:58,067 PRECLINICAL AND TRANSLATIONAL 3415 02:34:58,067 --> 02:35:01,204 MODELS BECAUSE WE THINK THESE 3416 02:35:01,204 --> 02:35:03,606 ARE ESSENTIAL TO UNDERSTAND 3417 02:35:03,606 --> 02:35:04,941 BASIC CELLULAR MECHANISM AND TO 3418 02:35:04,941 --> 02:35:07,543 GET TO THERAPEUTICS. 3419 02:35:07,543 --> 02:35:10,246 AND WHEN WE TALK ABOUT MODELS I 3420 02:35:10,246 --> 02:35:13,082 WANT TO EMPHASIZE THAT WE'RE 3421 02:35:13,082 --> 02:35:14,951 DEFINING MODELS QUITE BROADLY. 3422 02:35:14,951 --> 02:35:18,254 IN FACT BECAUSE OUR MODELS ARE 3423 02:35:18,254 --> 02:35:22,458 ONLY AS GOOD AS THE DISEASE THAT 3424 02:35:22,458 --> 02:35:27,496 WE'RE ABLE TO UNDERSTAND. 3425 02:35:27,496 --> 02:35:29,198 WE NEED TO UNDERSTAND WHAT THE 3426 02:35:29,198 --> 02:35:30,466 PATIENT POPULATION LOOKS LIKE 3427 02:35:30,466 --> 02:35:34,437 AND HOW THE DIFFERENT SUB TYPE 3428 02:35:34,437 --> 02:35:36,272 MANIFESTING IN THE BRAIN AND IN 3429 02:35:36,272 --> 02:35:46,816 OTHER FEATURES LIKE IN IMAGING 3430 02:35:48,484 --> 02:35:50,353 AND FLUID BIOMARKERS AND TAKING 3431 02:35:50,353 --> 02:35:54,457 AN UNBIASSED APPROACH 3432 02:35:54,457 --> 02:35:56,092 INTEGRATING A.I. TO DEFINE THE 3433 02:35:56,092 --> 02:35:58,995 WAYS IN WHICH THE GROUPS ARE 3434 02:35:58,995 --> 02:36:00,997 SIMILAR AND DISCREPANT SO OUR 3435 02:36:00,997 --> 02:36:03,799 MODELS IN CELLS AND IN MICE CAN 3436 02:36:03,799 --> 02:36:06,469 ULTIMATELY REFLECT THOSE 3437 02:36:06,469 --> 02:36:08,304 INDIVIDUALS. 3438 02:36:08,304 --> 02:36:11,774 IN ORDER TO DO THIS WE REALLY 3439 02:36:11,774 --> 02:36:19,248 SEE A NEED TO WORK IN 3440 02:36:19,248 --> 02:36:21,817 PUBLIC-PRIVATE PARTNERSHIPS TO 3441 02:36:21,817 --> 02:36:23,386 AGGREGATE THE DATA AND HARMONIZE 3442 02:36:23,386 --> 02:36:28,991 THE RESOURCES AND REALLY ENABLE 3443 02:36:28,991 --> 02:36:31,494 OUR UNDERSTANDING OF DISEASE AND 3444 02:36:31,494 --> 02:36:35,464 IN DOING THIS, WE THINK THAT 3445 02:36:35,464 --> 02:36:37,833 THERE'S A SPECIAL NEED TO ALSO 3446 02:36:37,833 --> 02:36:39,502 FOCUS ON MODELLING THE SPORADIC 3447 02:36:39,502 --> 02:36:41,704 FORMS OF DISEASE, WHICH IS 3448 02:36:41,704 --> 02:36:42,338 PRESENTED AS A MAJOR CHALLENGE 3449 02:36:42,338 --> 02:36:47,476 IN THE PAST. 3450 02:36:47,476 --> 02:36:49,211 SO I'LL STOP THERE AND THANK 3451 02:36:49,211 --> 02:36:52,548 EVERYONE FOR THEIR ASSISTANCE IN 3452 02:36:52,548 --> 02:36:54,450 DEVELOPING THESE 3453 02:36:54,450 --> 02:36:56,218 RECOMMENDATIONS. 3454 02:36:56,218 --> 02:36:57,153 >> THANK YOU. 3455 02:36:57,153 --> 02:37:01,223 I APPRECIATE THE OPPORTUNITY TO 3456 02:37:01,223 --> 02:37:09,131 PRESENT HERE AT THIS ADRD 3457 02:37:09,131 --> 02:37:09,799 SUMMIT. 3458 02:37:09,799 --> 02:37:11,701 I'LL TALK ABOUT RECOMMENDATION 3459 02:37:11,701 --> 02:37:13,769 NUMBER SIX WHICH IS PRIORITY 3460 02:37:13,769 --> 02:37:15,871 THREE AND THERE'S A LOT OF 3461 02:37:15,871 --> 02:37:16,405 WORDS. 3462 02:37:16,405 --> 02:37:18,841 RECOMMENDATION SIX IS TO 3463 02:37:18,841 --> 02:37:24,447 ELUCIDATE THE CELL AUTONOMOUS 3464 02:37:24,447 --> 02:37:28,451 AND UNDERSTANDING SELECTIVELY 3465 02:37:28,451 --> 02:37:30,453 VULNERABILITIES AND THERE BE 3466 02:37:30,453 --> 02:37:31,988 IDENTIFYING NEW TARGETS FOR 3467 02:37:31,988 --> 02:37:33,155 THERAPEUTIC DEVELOPMENT. 3468 02:37:33,155 --> 02:37:34,991 THE BULLETS ARE BASICALLY AN 3469 02:37:34,991 --> 02:37:37,326 OUTLINE OF HOW I'M GOING TO GO 3470 02:37:37,326 --> 02:37:38,294 THROUGH THIS BUT IT'S IMPORTANT 3471 02:37:38,294 --> 02:37:43,566 FOR FOLKS TO KNOW AS DR. KARCH 3472 02:37:43,566 --> 02:37:45,267 PRESENTED THE BRAIN REGIONS 3473 02:37:45,267 --> 02:37:48,337 VULNERABLE AND FTD ARE 3474 02:37:48,337 --> 02:37:50,639 DISTINCTIVE FROM ALZHEIMER'S 3475 02:37:50,639 --> 02:37:58,447 DISEASE AND OTHER ALZHEIMER'S 3476 02:37:58,447 --> 02:37:59,081 DISEASE-RELATED DIMENTIAS AND 3477 02:37:59,081 --> 02:38:02,418 THEY COME IN GLIA AND IMMUNE 3478 02:38:02,418 --> 02:38:04,020 CELLS AND ENDOTHELIAL CELLS I'LL 3479 02:38:04,020 --> 02:38:05,321 UNPACK IN A MOMENT. 3480 02:38:05,321 --> 02:38:09,258 IF WE CAN GAIN DEEPER 3481 02:38:09,258 --> 02:38:11,060 MECHANISTIC INSIGHT WHETHER 3482 02:38:11,060 --> 02:38:12,628 THEY'RE STARTING OR PROGRESSING 3483 02:38:12,628 --> 02:38:20,736 IN NEURON OR NON AUTONOMOUS OR 3484 02:38:20,736 --> 02:38:21,470 NON-NEURONAL CONTRIBUTIONS WILL 3485 02:38:21,470 --> 02:38:23,472 HELP DEVELOP BETTER THERAPIES. 3486 02:38:23,472 --> 02:38:26,442 THE PROCESSES THAT INVOLVE 3487 02:38:26,442 --> 02:38:27,943 NEURONS AND OTHER CELLS 3488 02:38:27,943 --> 02:38:31,447 INCLUDING NEURAL INFLAMMATION 3489 02:38:31,447 --> 02:38:38,854 AND SENESCENCE AND VASCULAR 3490 02:38:38,854 --> 02:38:40,156 DYSFUNCTION, ETCETERA. 3491 02:38:40,156 --> 02:38:43,859 THE HEADLINE HIERE IS WE KNOW 3492 02:38:43,859 --> 02:38:45,161 THROUGH THE COURSE OF SCIENTIFIC 3493 02:38:45,161 --> 02:38:46,996 RESEARCH AND EFFECTIVE THERAPIES 3494 02:38:46,996 --> 02:38:48,364 DEVELOPED TO DATE IF WE BETTER 3495 02:38:48,364 --> 02:38:50,032 UNDERSTAND DISEASE MECHANISMS 3496 02:38:50,032 --> 02:38:52,234 WE'RE GOING TO GET BETTER 3497 02:38:52,234 --> 02:38:54,270 THERAPIES AND TO THIS I'LL ADD 3498 02:38:54,270 --> 02:38:57,673 WHAT DR. IRWIN TALKED ABOUT IS 3499 02:38:57,673 --> 02:39:01,343 BETTER BIOMARKERS AND DR. BOXER 3500 02:39:01,343 --> 02:39:03,779 SAID WE NEED THEM TO DO BETTER 3501 02:39:03,779 --> 02:39:04,046 THERAPIES. 3502 02:39:04,046 --> 02:39:08,551 THE BRAIN REGIONS AFFECTED ARE 3503 02:39:08,551 --> 02:39:15,891 THE FRONTO TEMPORAL LOBES AND 3504 02:39:15,891 --> 02:39:17,326 EACH BRAIN REGIONS HAVE 3505 02:39:17,326 --> 02:39:19,328 DIFFERENT CELLS. 3506 02:39:19,328 --> 02:39:22,631 NEURON THERE AND THERE'S ASTRO 3507 02:39:22,631 --> 02:39:24,867 GLIA WHICH ARE THE PARENTS OF 3508 02:39:24,867 --> 02:39:27,703 NEURONS, THE COUSINS OF NEURONS 3509 02:39:27,703 --> 02:39:29,438 OR SIBLINGS RATHER THAN JUST A 3510 02:39:29,438 --> 02:39:31,774 GLUE CELL. 3511 02:39:31,774 --> 02:39:34,443 MICROGLIA WHICH ARE IMPORTANT TO 3512 02:39:34,443 --> 02:39:39,882 THE IMMUNE SYSTEM AND APPENDMEL 3513 02:39:39,882 --> 02:39:42,451 CELLS AND ADREN DROE SITES AND 3514 02:39:42,451 --> 02:39:49,258 MAY CONTRIBUTE TO THE DISEASES 3515 02:39:49,258 --> 02:39:52,261 AND NEED TO BE STUDIED AND 3516 02:39:52,261 --> 02:39:53,095 UNDERSTOOD. 3517 02:39:53,095 --> 02:39:55,264 ALSO THE GENETICS OF THE GENES 3518 02:39:55,264 --> 02:39:56,899 FOUND TO BE ASSOCIATED WITH FTD 3519 02:39:56,899 --> 02:40:01,337 ARE NOT ALWAYS EXPRESSED IN THE 3520 02:40:01,337 --> 02:40:02,438 NEURONS. 3521 02:40:02,438 --> 02:40:04,740 THE VAST MAJORITY ARE EXPRESSED 3522 02:40:04,740 --> 02:40:06,275 IN MOST CELLS. 3523 02:40:06,275 --> 02:40:08,711 SOMETIMES FOR PROGRANULIN IT'S 3524 02:40:08,711 --> 02:40:11,213 EXPRESSED MORE IN MICROGLIA THAN 3525 02:40:11,213 --> 02:40:13,149 IN NEURONS AND TO TAKE AN 3526 02:40:13,149 --> 02:40:14,416 EXAMPLE FROM ALZHEIMER'S DISEASE 3527 02:40:14,416 --> 02:40:16,685 THERE'S GENES SUCH THAT ARE OATH 3528 02:40:16,685 --> 02:40:18,120 EXPRESSED IN MICROGLIA AND NOT 3529 02:40:18,120 --> 02:40:19,321 IN NEURONS AT ALL. 3530 02:40:19,321 --> 02:40:20,456 IT'S IMPORTANT AS WE THINK ABOUT 3531 02:40:20,456 --> 02:40:24,193 THE GENETICS WE THINK ABOUT 3532 02:40:24,193 --> 02:40:26,128 WHERE THE GENE MUTATION IS 3533 02:40:26,128 --> 02:40:26,362 ACTING. 3534 02:40:26,362 --> 02:40:30,065 IN ADDITION, I THINK FOR A LONG 3535 02:40:30,065 --> 02:40:34,737 TIME I THOUGHT THE AGGREGATES 3536 02:40:34,737 --> 02:40:37,239 IMPLICATIONS THE TDP43 AND TAU 3537 02:40:37,239 --> 02:40:41,143 AGGREGATE ONLY FOUND IN NEURONS 3538 02:40:41,143 --> 02:40:43,312 WE KNOW NOW IN SUPRANUCLEAR 3539 02:40:43,312 --> 02:40:51,921 PALSY YOU CAN SEE THEM IN ASTRO 3540 02:40:51,921 --> 02:40:56,058 GLIA AND ADRENDOCYTES AND WE AS 3541 02:40:56,058 --> 02:40:58,460 WE UNDERSTAND DISEASE MECHANISMS 3542 02:40:58,460 --> 02:41:00,963 IT WILL LEAD TO APPROPRIATE 3543 02:41:00,963 --> 02:41:02,998 THERAPIES THAT PERHAPS TARGET 3544 02:41:02,998 --> 02:41:03,966 MORE THAN NEURONS. 3545 02:41:03,966 --> 02:41:05,234 AS A CORRELATE WHAT I SHOULD 3546 02:41:05,234 --> 02:41:09,438 HAVE ADDED IS AS WE UNDERSTAND 3547 02:41:09,438 --> 02:41:10,372 MECHANISM, WE CAN BETTER 3548 02:41:10,372 --> 02:41:11,807 UNDERSTAND WHAT WE NEED TO 3549 02:41:11,807 --> 02:41:13,976 DEVELOP AS BIOMARKERS. 3550 02:41:13,976 --> 02:41:16,145 SO TOGETHER THESE MAKE UP THE 3551 02:41:16,145 --> 02:41:19,782 CELL AUTONOMOUS VERSUS 3552 02:41:19,782 --> 02:41:25,321 NON-AUTONOMOUS MECHANISMS. 3553 02:41:25,321 --> 02:41:27,056 SO SELECTIVE VULNERABILITY IS 3554 02:41:27,056 --> 02:41:29,592 THE CONCEPT CERTAIN NEURONS OR 3555 02:41:29,592 --> 02:41:33,128 CERTAIN CELLS IN DIFFERENT BRAIN 3556 02:41:33,128 --> 02:41:34,430 AFFECTED IN DIFFERENT DISEASES. 3557 02:41:34,430 --> 02:41:35,664 THIS TERM HAS BEEN AROUND FOR 3558 02:41:35,664 --> 02:41:38,334 OVER 20 YEARS. 3559 02:41:38,334 --> 02:41:40,536 I REMEMBER READING REVIEWS ABOUT 3560 02:41:40,536 --> 02:41:42,371 THIS IN THE EARLY 2000s BUT THE 3561 02:41:42,371 --> 02:41:44,440 ADVANCES WE HAVE MADE HAVE COME 3562 02:41:44,440 --> 02:41:45,474 FROM UNDERSTANDING THERE'S A LOT 3563 02:41:45,474 --> 02:41:47,743 OF GENETIC MUTATIONS ASSOCIATED 3564 02:41:47,743 --> 02:41:49,311 WITH THE DIFFERENT DISEASES. 3565 02:41:49,311 --> 02:41:51,013 SOMETIMES THEY'RE OVERLAPPING, 3566 02:41:51,013 --> 02:41:52,448 SOMETIMES THEY'RE NOT AND 3567 02:41:52,448 --> 02:41:53,249 THEY'RE HIGHLIGHTED IN THE 3568 02:41:53,249 --> 02:41:54,116 PURPLE BOX. 3569 02:41:54,116 --> 02:41:56,785 IN ADDITION, WE NOW KNOW THAT 3570 02:41:56,785 --> 02:41:58,621 THERE ARE DIFFERENT CELL TYPES 3571 02:41:58,621 --> 02:42:01,924 THAT MAY BE AFFECTED, FOR 3572 02:42:01,924 --> 02:42:05,261 EXAMPLE, LAYER TWO VERSUS LAYER 3573 02:42:05,261 --> 02:42:06,929 SIX IN BRAIN STEM VERSUS 3574 02:42:06,929 --> 02:42:09,265 CORTICAL AND THEY'VE BEEN VERY 3575 02:42:09,265 --> 02:42:10,432 IMPORTANT IN UNDERSTANDING 3576 02:42:10,432 --> 02:42:12,368 SELECTIVE VULNERABILITY. 3577 02:42:12,368 --> 02:42:14,670 THE BOTTOM LINE IS WE DON'T 3578 02:42:14,670 --> 02:42:16,372 UNDERSTAND WHAT MAKES CERTAIN 3579 02:42:16,372 --> 02:42:17,640 BRAIN REGIONS AND CELL TYPES 3580 02:42:17,640 --> 02:42:17,940 VULNERABLE. 3581 02:42:17,940 --> 02:42:21,477 SO THIS IS A KEY AREA WE NEED TO 3582 02:42:21,477 --> 02:42:22,011 PUSH FORWARD IN TERMS OF 3583 02:42:22,011 --> 02:42:30,452 DEVELOPING INSIGHT. 3584 02:42:30,452 --> 02:42:32,488 AMONG THE REASONS FOR MOVING 3585 02:42:32,488 --> 02:42:34,456 BEYOND THE NEURON CENTRIC VIEW 3586 02:42:34,456 --> 02:42:36,492 ARE THE DISTRIBUTION OF 3587 02:42:36,492 --> 02:42:38,360 AGGREGATES, THE RELATIVE GENE 3588 02:42:38,360 --> 02:42:41,397 EXPRESSION AND CELL 3589 02:42:41,397 --> 02:42:42,798 NON-AUTONOMOUS MECHANISMS I'VE 3590 02:42:42,798 --> 02:42:43,232 MENTIONED. 3591 02:42:43,232 --> 02:42:45,200 THESE THREE THINGS ALSO LEAD US 3592 02:42:45,200 --> 02:42:49,138 TO FOCUS ON DIFFERENT PROCESSES 3593 02:42:49,138 --> 02:42:49,538 FOR INVESTIGATION. 3594 02:42:49,538 --> 02:42:52,841 SO NEURAL INFLAMMATION WE KNOW 3595 02:42:52,841 --> 02:42:55,444 IS A BIG CONTRIBUTOR IN FTD 3596 02:42:55,444 --> 02:42:59,315 BECAUSE WE SEE EXPANSION OF 3597 02:42:59,315 --> 02:43:01,383 GLIAL CELLS AND THERE'S THE 3598 02:43:01,383 --> 02:43:05,487 INABILITY TO CLEAR PROTEINS AND 3599 02:43:05,487 --> 02:43:06,422 LIPID METABOLISM IS IMPORTANT 3600 02:43:06,422 --> 02:43:08,390 AND METABOLISM AND SENESCENCE 3601 02:43:08,390 --> 02:43:10,459 AND THE SPREADING OF TOXIC 3602 02:43:10,459 --> 02:43:12,628 PROTEINS AND VASCULAR 3603 02:43:12,628 --> 02:43:15,064 DYSFUNCTION AND APOE 3604 02:43:15,064 --> 02:43:18,434 MUTATIONS -- VARIANTS LEADING TO 3605 02:43:18,434 --> 02:43:21,737 INCREASED RISK FOR FTD ALONG 3606 02:43:21,737 --> 02:43:22,971 WITH ALZHEIMER'S DISEASE AND 3607 02:43:22,971 --> 02:43:24,406 SLEEP DYSFUNCTION, STRESS AND 3608 02:43:24,406 --> 02:43:26,008 AGING WHICH IS THE SINGLE MOST 3609 02:43:26,008 --> 02:43:27,710 IMPORTANT RISK FACTOR FOR ALL 3610 02:43:27,710 --> 02:43:30,679 THE NEURAL DEGENERATIVE 3611 02:43:30,679 --> 02:43:34,116 DISORDERS. 3612 02:43:34,116 --> 02:43:36,452 SO, THE NEXT QUESTION IS WHAT IS 3613 02:43:36,452 --> 02:43:37,453 NEEDED TO ADVANCE THE 3614 02:43:37,453 --> 02:43:37,820 RECOMMENDATION? 3615 02:43:37,820 --> 02:43:40,389 YOU CAN GO AHEAD AND PRESS 3616 02:43:40,389 --> 02:43:40,723 THROUGH THESE. 3617 02:43:40,723 --> 02:43:42,291 FIRST IS CELL BIOLOGICAL TOOLS 3618 02:43:42,291 --> 02:43:44,860 AND APPROACHES. 3619 02:43:44,860 --> 02:43:52,601 BY CELL BIOLOGICAL I MEAN THESE 3620 02:43:52,601 --> 02:43:54,436 APPROACHES THAT WE DON'T YET 3621 02:43:54,436 --> 02:44:04,780 KNOW AND MOST OF US DOESN'T KNOW 3622 02:44:04,780 --> 02:44:06,915 WE NEEDED SMARTPHONES AND CELL 3623 02:44:06,915 --> 02:44:07,816 PHONES AND NOW WE CAN'T LIVE 3624 02:44:07,816 --> 02:44:09,485 WITHOUT THEM AND IN TERMS OF 3625 02:44:09,485 --> 02:44:14,456 SCIENTIFIC TOOLS ARE THE CRISPR 3626 02:44:14,456 --> 02:44:17,559 EDITING AS WELL AS CRISPR 3627 02:44:17,559 --> 02:44:19,328 INHIBITION AND ACTIVATION THAT 3628 02:44:19,328 --> 02:44:20,863 HAVE NOT JUST BEEN THOUGHT OF IN 3629 02:44:20,863 --> 02:44:22,564 TERMS OF THERAPEUTIC APPROACHES 3630 02:44:22,564 --> 02:44:23,665 BUT TRANSFORMED OUR ABILITY TO 3631 02:44:23,665 --> 02:44:25,467 DO SCIENCE IN THE LAB. 3632 02:44:25,467 --> 02:44:27,536 AS DR. KARCH TALKED ABOUT THE 3633 02:44:27,536 --> 02:44:29,405 STEM CELL AND ORGANOID MODELS 3634 02:44:29,405 --> 02:44:34,443 ARE INCREDIBLY IMPORTANT AND 3635 02:44:34,443 --> 02:44:36,478 AS 3636 02:44:36,478 --> 02:44:36,812 AS 3637 02:44:36,812 --> 02:44:37,446 ASEMBLOIDS ARE BEING DEVELOPED. 3638 02:44:37,446 --> 02:44:43,452 THE ANIMAL MODELS WE HAVE IN C. 3639 02:44:43,452 --> 02:44:45,587 ELEGANS AND MICE ARE IMPORTANT 3640 02:44:45,587 --> 02:44:48,791 AND BECAUSE FTD AFFECTS HIGHER 3641 02:44:48,791 --> 02:44:50,459 BRAIN FUNCTIONS SUCH AS SOCIAL 3642 02:44:50,459 --> 02:44:51,493 COGNITION, ETCETERA, IT'S 3643 02:44:51,493 --> 02:44:53,529 IMPORTANT TO HAVE MODELS WHERE 3644 02:44:53,529 --> 02:44:57,099 WE CAN STUDY BEHAVIORS AND ONE 3645 02:44:57,099 --> 02:45:01,470 EXAMPLE I LOVE TO SITE IS THE 3646 02:45:01,470 --> 02:45:05,274 PRAIRIE FOLDS WHICH FALL IN LOVE 3647 02:45:05,274 --> 02:45:07,476 AND EXHIBIT PAIR BONDING FOR A 3648 02:45:07,476 --> 02:45:09,111 LIFE TIME IS IMPORTANT FOR 3649 02:45:09,111 --> 02:45:09,678 UNDERSTANDING DISEASES AND 3650 02:45:09,678 --> 02:45:14,183 MODELS TO STUDY AGING IN. 3651 02:45:14,183 --> 02:45:16,752 CELL TYPE SPECIFIC OMICS ARE 3652 02:45:16,752 --> 02:45:17,019 IMPORTANT. 3653 02:45:17,019 --> 02:45:18,754 I THINK RNA SEQ HAS BEEN AT THE 3654 02:45:18,754 --> 02:45:20,956 FOREFRONT AT FIGURING OUT WHAT 3655 02:45:20,956 --> 02:45:23,058 CELLS ARE EXPRESSING WHAT BUT 3656 02:45:23,058 --> 02:45:25,227 PROTEOMICS ARE ALSO GOING TO BE 3657 02:45:25,227 --> 02:45:25,494 IMPORTANT. 3658 02:45:25,494 --> 02:45:27,529 CELL TYPE SPECIFIC PROTEOMICS. 3659 02:45:27,529 --> 02:45:30,098 LIPID OMICS, METABOLOMICS ARE 3660 02:45:30,098 --> 02:45:31,467 ALL REALLY IMPORTANT. 3661 02:45:31,467 --> 02:45:32,801 IF WE HAVE THE DATA WE NEED DATA 3662 02:45:32,801 --> 02:45:35,504 ANALYSIS AND SHARING PIPELINES 3663 02:45:35,504 --> 02:45:37,372 TO DECONVOLUTE THE DATA TO FIND 3664 02:45:37,372 --> 02:45:38,006 THE SECRETS THE DATA IS TRYING 3665 02:45:38,006 --> 02:45:41,710 TO TELL US. 3666 02:45:41,710 --> 02:45:42,845 REALLY IMPORTANTLY IT IS 3667 02:45:42,845 --> 02:45:45,547 IMPORTANT TO KEEP BRINGING A 3668 02:45:45,547 --> 02:45:48,016 PIPELINE OF SCIENTISTS IN 3669 02:45:48,016 --> 02:45:51,787 TRAINING... THE NIH HAS BEEN A 3670 02:45:51,787 --> 02:45:53,322 HUGE PROPONENT AND PUBLIC 3671 02:45:53,322 --> 02:45:55,557 PRIVATE PARTNERSHIP WHICH 3672 02:45:55,557 --> 02:45:57,125 SUPPORT THIS AND ADVOCATES SUCH 3673 02:45:57,125 --> 02:45:59,528 AS JACOBS. TOGETHER, ALL THESE 3674 02:45:59,528 --> 02:46:01,463 THINGS CAN LEAD US TO 3675 02:46:01,463 --> 02:46:04,066 MECHANISTIC INSIGHTS, NEW 3676 02:46:04,066 --> 02:46:06,301 TARGETS, NEW BIO MARKER, 3677 02:46:06,301 --> 02:46:08,971 THERAPIES IN PRECISION MEDICINE. 3678 02:46:08,971 --> 02:46:10,339 WITH THAT, I'LL FINISH. 3679 02:46:10,339 --> 02:46:12,307 >> ALL RIGHT. HI, EVERYONE. 3680 02:46:12,307 --> 02:46:17,646 I'M BETH FROST, DIRECTOR OF 3681 02:46:17,646 --> 02:46:19,882 SENSORS FOR ALZHEIMER'S BROWN. I 3682 02:46:19,882 --> 02:46:23,285 WILL COVER TWO ISSUES INCLUDING 3683 02:46:23,285 --> 02:46:26,188 MODIFIERS OF FRONTAL TEMPORAL 3684 02:46:26,188 --> 02:46:32,127 DEMENTIA RISK AND ACCELERATING 3685 02:46:32,127 --> 02:46:33,729 THERAPEUTIC DISCOVERY. WE 3686 02:46:33,729 --> 02:46:36,765 RECOMMEND TO DEFINE GENETIC AND 3687 02:46:36,765 --> 02:46:38,534 MOLECULAR MODIFIER OF GENETIC 3688 02:46:38,534 --> 02:46:41,036 AND SPORADIC FTD INCLUDING 3689 02:46:41,036 --> 02:46:42,871 COHORTS OF THE U.S. POPULATION 3690 02:46:42,871 --> 02:46:44,673 ALONG WITH MOLECULAR AND 3691 02:46:44,673 --> 02:46:49,444 CELLULAR MECHANISMS OF ACTION. 3692 02:46:49,444 --> 02:46:52,814 NEXT SLIDE. SO OVER HALF OF 3693 02:46:52,814 --> 02:46:55,450 FRONTAL TEMPORAL DEMENTIAS ARE 3694 02:46:55,450 --> 02:46:57,586 SPORADIC, MEANING THEY DON'T 3695 02:46:57,586 --> 02:46:59,421 FALL WITHIN A FAMILY THAT IS 3696 02:46:59,421 --> 02:47:03,325 AFFECTED. THERE ARE ABOUT 15% OF 3697 02:47:03,325 --> 02:47:08,397 FAMILIAL CASE WHERES WE KNOW S 3698 02:47:08,397 --> 02:47:09,631 /* -- CASES WHERE WE KNOW WHAT 3699 02:47:09,631 --> 02:47:13,602 IS CAUSING THE FTD. THESE ARE 3700 02:47:13,602 --> 02:47:17,573 CAUSED BY THREE MUTATIONS. THIS 3701 02:47:17,573 --> 02:47:24,746 EXPANSION AND C972 MUTATION AND 3702 02:47:24,746 --> 02:47:26,782 PROGRANULIN AND GENE THAT EN 3703 02:47:26,782 --> 02:47:31,186 COALS TA, MAP T, WHICH AFFECTS 3704 02:47:31,186 --> 02:47:34,790 WENDY AND HER GROUP. THEIR GENES 3705 02:47:34,790 --> 02:47:36,658 HAVE BEEN IDENTIFIED THAT CAUSE 3706 02:47:36,658 --> 02:47:39,361 ABOUT -- CONTRIBUTE TO THAT 15% 3707 02:47:39,361 --> 02:47:43,065 OF FTD CAUSED BY A KNOWN 3708 02:47:43,065 --> 02:47:45,300 MUTATION. HOWEVER A BIG CHUNK OF 3709 02:47:45,300 --> 02:47:47,369 FAMILIAL CASES ARE DUE TO 3710 02:47:47,369 --> 02:47:49,271 VARIANTS AND MUTATIONS WE DON'T 3711 02:47:49,271 --> 02:47:50,939 KNOW WHAT THEY ARE OR 3712 02:47:50,939 --> 02:47:52,908 POTENTIALLY OTHER FACTORS THAT 3713 02:47:52,908 --> 02:47:55,677 MAY UNDERLIE DEVELOPMENT OF FTD 3714 02:47:55,677 --> 02:47:57,946 WITHIN A CERTAIN FAMILY. SO WE 3715 02:47:57,946 --> 02:48:00,215 NEED TO UNDERSTAND HOW THESE 3716 02:48:00,215 --> 02:48:01,617 MUTATIONS ACTUALLY DRIVE DISEASE 3717 02:48:01,617 --> 02:48:04,186 AT A MOLECULAR AND CELLULAR 3718 02:48:04,186 --> 02:48:05,020 LEVEL AND UNDERSTAND WHAT CELL 3719 02:48:05,020 --> 02:48:08,657 TYPES ARE AFFECTED BY THESE 3720 02:48:08,657 --> 02:48:11,393 MUTATIONS. DR. GA NICELY COVERED 3721 02:48:11,393 --> 02:48:13,261 THE IMPORTANCE OF UNDERSTANDING 3722 02:48:13,261 --> 02:48:15,364 WHENEVER THESE DEPOSIT WHAT CELL 3723 02:48:15,364 --> 02:48:17,532 TYPES THEY ARE DEPOSITING IN AND 3724 02:48:17,532 --> 02:48:20,168 HOW THAT MIGHT AFFECT 3725 02:48:20,168 --> 02:48:22,137 NEIGHBORING CELLS. SO 3726 02:48:22,137 --> 02:48:24,106 UNDERSTANDING WE ARE EACH A 3727 02:48:24,106 --> 02:48:25,941 CONSTELLATION OF GENES, SOME OF 3728 02:48:25,941 --> 02:48:28,877 WHICH MAY EXACERBATE OR PROTECT 3729 02:48:28,877 --> 02:48:30,479 AGAINST DISEASE-CAUSING 3730 02:48:30,479 --> 02:48:32,280 MUTATIONS WE NEED TO UNDERSTAND 3731 02:48:32,280 --> 02:48:33,749 HOW DIFFERENT THE BACKGROUNDS 3732 02:48:33,749 --> 02:48:36,785 AFFECT THE RISK AND RESILIENCE 3733 02:48:36,785 --> 02:48:39,988 FOR INDIVIDUALS CARRYING THESE 3734 02:48:39,988 --> 02:48:40,889 MUTATIONS. GOING THROUGH THE 3735 02:48:40,889 --> 02:48:43,458 SLIDES, AHEAD OF ME THERE, BUT 3736 02:48:43,458 --> 02:48:45,661 FOR -- IN UNDERSTANDING HOW 3737 02:48:45,661 --> 02:48:46,795 GENETIC BACKGROUND AFFECTS RISK 3738 02:48:46,795 --> 02:48:48,730 WE NEED TO KNOW HOW THESE 3739 02:48:48,730 --> 02:48:53,602 MUTATIONS IN DIFFERENT POP LAYS 3740 02:48:53,602 --> 02:48:57,039 AFFECT RISK, AGE OF ONSET AND 3741 02:48:57,039 --> 02:48:59,408 HOW QUICKLY THESE PROGRESS. WE 3742 02:48:59,408 --> 02:49:01,610 NEED TO SUPPORT AND DEVELOP CORE 3743 02:49:01,610 --> 02:49:04,680 SERVICES INCLUDING GENE KNOW 3744 02:49:04,680 --> 02:49:07,115 TYPING AND CELLULAR MODELS AND 3745 02:49:07,115 --> 02:49:09,084 BUILD AND SUPPORT COHORTS FOR 3746 02:49:09,084 --> 02:49:10,652 INDIVIDUAL WHO'S CARRY THESE. AN 3747 02:49:10,652 --> 02:49:12,454 EXAMPLE HOW THIS WORKS WELCOMES 3748 02:49:12,454 --> 02:49:13,622 FROM THE ALZHEIMER'S DISEASE 3749 02:49:13,622 --> 02:49:18,193 FIELD, MENTIONED IN THE INTRO. 3750 02:49:18,193 --> 02:49:22,030 WHILE MUTATIONS INCREASE 1, 3751 02:49:22,030 --> 02:49:23,231 NORMALLY SUFFICIENT TO CAUSE 3752 02:49:23,231 --> 02:49:26,334 ALZHEIMER'S, A STUDY OF COHORT 3753 02:49:26,334 --> 02:49:29,404 IN COLUMBIA WHO CARRY A MUTATION 3754 02:49:29,404 --> 02:49:31,840 THAT WOULD NORMALLY CAUSE 3755 02:49:31,840 --> 02:49:34,242 ALZHEIMER'S FOUND A SUBSET WERE 3756 02:49:34,242 --> 02:49:36,378 RESISTANT TO DEVELOPING 3757 02:49:36,378 --> 02:49:38,447 ALZHEIMER'S, DESPITE CARRY ING 3758 02:49:38,447 --> 02:49:42,451 THAT MUTATION. SO IT WAS 3759 02:49:42,451 --> 02:49:46,888 DISCOVERED THESE PEOPLE CARRY 3760 02:49:46,888 --> 02:49:48,990 THE CHRIST CHURCH MUTATION THAT 3761 02:49:48,990 --> 02:49:51,226 PROTECTS THEM. THIS TYPE -- WE 3762 02:49:51,226 --> 02:49:57,999 NEED MORE THOF WORK IN FRON-- M 3763 02:49:57,999 --> 02:49:59,901 WORK IN FRONTAL TEMPORAL WORK AS 3764 02:49:59,901 --> 02:50:01,737 WELL. UNDERSTANDING WHY THERE IS 3765 02:50:01,737 --> 02:50:03,271 THIS HUGE FRACTION WHERE THEY 3766 02:50:03,271 --> 02:50:06,942 DON'T RUN IN FAMILIES, OCCUR 3767 02:50:06,942 --> 02:50:08,310 SPORADICALLY, WE NEED TO FOCUS 3768 02:50:08,310 --> 02:50:08,844 ON UNDERSTAND ING WHAT 3769 02:50:08,844 --> 02:50:12,748 ENVIRONMENTAL FACTORS MIGHT BE 3770 02:50:12,748 --> 02:50:20,489 CONTRIBUTING THERE. NEXT SLIDE 3771 02:50:20,489 --> 02:50:22,591 SO RECOMMENDATION 8 IS PRIORITY 3772 02:50:22,591 --> 02:50:25,627 4 FOCUSING ON PRE-CLINICAL 3773 02:50:25,627 --> 02:50:27,796 DISEASE MODIFYING -- BACK ONE 3774 02:50:27,796 --> 02:50:29,664 SLIDE, I DON'T HAVE IT 3775 02:50:29,664 --> 02:50:33,168 MEMORIZED. IN FRONTAL TEMPORAL 3776 02:50:33,168 --> 02:50:34,836 DEMENTIA BUT DEF RAJING KNOWN 3777 02:50:34,836 --> 02:50:37,305 PATHWAYS OR MECHANISM-AGNOSTIC 3778 02:50:37,305 --> 02:50:39,708 APPROACHES SUCH AS HIGH 3779 02:50:39,708 --> 02:50:41,643 THROUGHPUT SCREENING. WE KNOW 3780 02:50:41,643 --> 02:50:44,646 THE PROTEINS THAT DEPOSIT IN 3781 02:50:44,646 --> 02:50:49,618 FRONTAL TEMPORAL DEMENTIA. THESE 3782 02:50:49,618 --> 02:50:57,826 ARE TA, TDP43 AND FUS. THESE ARE 3783 02:50:57,826 --> 02:51:05,433 TARGETS WHETHER TAN BO IT /* AN 3784 02:51:05,433 --> 02:51:06,935 UNDERSTANDING OF FACTORS THAT 3785 02:51:06,935 --> 02:51:08,737 MAY CONTRIBUTE TO DEPOSITION OF 3786 02:51:08,737 --> 02:51:14,009 SOME OF THESE PATHOGENIC PREE 3787 02:51:14,009 --> 02:51:16,278 PROTEINS FOR DEVELOPMENT. WE ARE 3788 02:51:16,278 --> 02:51:17,412 BEGINNING TO UNDERSTAND HOW 3789 02:51:17,412 --> 02:51:21,950 THESE ARE CAUSING NEURAL 3790 02:51:21,950 --> 02:51:22,951 DENEUDENEWURO 3791 02:51:22,951 --> 02:51:25,520 DENEURODEGENERATION AND NEEDS TO 3792 02:51:25,520 --> 02:51:27,289 UNDERSTAND ACROSS THE SPECTRUM, 3793 02:51:27,289 --> 02:51:28,723 WE NEED TO RECOGNIZE THAT 3794 02:51:28,723 --> 02:51:31,726 INDIVIDUALS ARE MAYBE NOT GOING 3795 02:51:31,726 --> 02:51:33,895 TO BE -- THEY GOING TO NEED 3796 02:51:33,895 --> 02:51:35,230 DIFFERENT DRUGS DEPENDING WHICH 3797 02:51:35,230 --> 02:51:38,967 STAGE THEY ARE IN. WE NEED TO BE 3798 02:51:38,967 --> 02:51:40,569 ABLE TO DIAGNOSE PEOPLE AND KNOW 3799 02:51:40,569 --> 02:51:42,437 WHERE THEY ARE IN THE SPECTRUM 3800 02:51:42,437 --> 02:51:49,444 SO WE CAN DEVELOP -- GIVE THEM 3801 02:51:49,444 --> 02:51:50,779 THANK YOU, MR. PR 3802 02:51:50,779 --> 02:51:51,446 THERAPEUTICS FOR THE STAGE THEY 3803 02:51:51,446 --> 02:51:52,480 ARE IN AND UNDERSTAND HOW THEY 3804 02:51:52,480 --> 02:51:56,251 AFFECT DIFFERENT CELL TYPES, AS 3805 02:51:56,251 --> 02:52:02,090 DR. GAL MENTIONED, NEXT SLIDE. A 3806 02:52:02,090 --> 02:52:03,592 EXAMPLE HOW THIS HAS WORKED 3807 02:52:03,592 --> 02:52:05,827 WELL. SO WE AND OTHERS HAVE 3808 02:52:05,827 --> 02:52:08,463 FOUND THAT PATHOGENIC FORMS OF 3809 02:52:08,463 --> 02:52:16,738 TA AND TDP43 DRIVE 3810 02:52:16,738 --> 02:52:18,974 NEURODEGENERATIVE THROUGH 3811 02:52:18,974 --> 02:52:22,744 ACTIVATION OF RETRO TRANSPOSONS, 3812 02:52:22,744 --> 02:52:25,547 MAKE UP ABOUT 45% OF THE HUMAN 3813 02:52:25,547 --> 02:52:28,817 GENOME. WHEN THESE ELEMENTS GET 3814 02:52:28,817 --> 02:52:32,854 ACTIVATED THROUGH TA OR TDP43 3815 02:52:32,854 --> 02:52:35,824 THEY ARE TRANSCRIBED INTO RNA, 3816 02:52:35,824 --> 02:52:38,426 SOMETIMES PROTEIN-CODING. THOSE 3817 02:52:38,426 --> 02:52:40,195 PROTEINS CAN ACT TO MAKE A NEW 3818 02:52:40,195 --> 02:52:41,529 COPY OF D.N.A. AND THAT CAN 3819 02:52:41,529 --> 02:52:44,332 INSERT SOMEWHERE ELSE IN THE 3820 02:52:44,332 --> 02:52:50,438 GENOME. OVER THE COURSE OF RETRO 3821 02:52:50,438 --> 02:52:51,640 TRANSPOSON ACTIVATION THEY CAN 3822 02:52:51,640 --> 02:52:53,942 JUMP, REFERRED TO AS JUMPING 3823 02:52:53,942 --> 02:52:55,610 GENES. THE PRODUCTS MADE OVER 3824 02:52:55,610 --> 02:52:57,913 THE COURSE OF THE ACTIVATION CAN 3825 02:52:57,913 --> 02:53:01,750 LOOK LIKE A VIRUS TO THE CELL. 3826 02:53:01,750 --> 02:53:07,656 WE FOUND THAT AN ANTI VIRAL 3827 02:53:07,656 --> 02:53:10,458 NORMALLY PRESCRIBED FOR HIV CAN 3828 02:53:10,458 --> 02:53:12,260 BLOCK THE TRANSCRIPTION OF 3829 02:53:12,260 --> 02:53:13,595 R.N.A. INTO D.N.A. WE FOUND THIS 3830 02:53:13,595 --> 02:53:18,433 WAS EFFECTIVE IN TA MODELS, FLY 3831 02:53:18,433 --> 02:53:26,374 MODELS, TEL O 3832 02:53:26,374 --> 02:53:26,775 3833 02:53:26,775 --> 02:53:29,277 DIFFERENT MOUSE WORKS. WE 3834 02:53:29,277 --> 02:53:31,212 FINISH ED A PHASE 2 TRIAL AT UT 3835 02:53:31,212 --> 02:53:34,049 HEALTH BEFORE I MOVED TO BROWN 3836 02:53:34,049 --> 02:53:36,985 FOR ALZHEIMER'S DISEASE USE ING 3837 02:53:36,985 --> 02:53:38,887 THIS HIV DRUG. A DIFFERENT HIV 3838 02:53:38,887 --> 02:53:42,691 DRUG IS TESTED AT BROWN IN 3839 02:53:42,691 --> 02:53:46,728 ALZHEIMER'S. BECAUSE THIS IS A 3840 02:53:46,728 --> 02:53:50,465 TA-BASED IT CAN BE EXPANDED TO 3841 02:53:50,465 --> 02:53:53,401 NON-ALZHEIMER'S TELOPATHY. A 3842 02:53:53,401 --> 02:53:57,072 RECENT PHASE 2A WAS FINISHED FOR 3843 02:53:57,072 --> 02:54:00,842 HIV AND PARTICIPANTS WITH SUPER 3844 02:54:00,842 --> 02:54:02,444 NUCLEAR PAL SI WITH GOOD 3845 02:54:02,444 --> 02:54:04,813 RESULTS. SIMILARLY FINISHED A 3846 02:54:04,813 --> 02:54:09,384 TRIAL IN ALSFTD AND PLANNING FOR 3847 02:54:09,384 --> 02:54:13,588 PHASE 3. THOR LIGHTHOUSE TRIAL 3848 02:54:13,588 --> 02:54:15,857 IN ALS HAD NICE RESULTS FROM 3849 02:54:15,857 --> 02:54:18,793 PHASE 2, IN A PHASE 3 OPEN 3850 02:54:18,793 --> 02:54:20,028 ROLLOVER BASED ON RESULTS FROM 3851 02:54:20,028 --> 02:54:24,099 THAT TRIAL. THIS IS ONE EXAMPLE 3852 02:54:24,099 --> 02:54:31,940 OF THERAPEUTICS THAT TARGET 3853 02:54:31,940 --> 02:54:33,708 INFLAMMATION ASSOCIATED WITH 3854 02:54:33,708 --> 02:54:34,943 DEMENTIA AND RECOMMEND OTHER 3855 02:54:34,943 --> 02:54:37,445 POTENTIAL KNOWN TARGETS BE 3856 02:54:37,445 --> 02:54:38,446 PURSUED IN PRE-CLINICAL AND 3857 02:54:38,446 --> 02:54:43,785 CLINICAL STUDIES AS WELL AS 3858 02:54:43,785 --> 02:54:46,421 APPROACHES AGNOSTIC AS HI 3859 02:54:46,421 --> 02:54:47,322 THROUGHPUT COMPOUND SCREENING. 3860 02:54:47,322 --> 02:54:53,294 BACK TO THE ORGANIZERS. 3861 02:54:53,294 --> 02:54:56,297 >> I JUST WANT TO THAN TK FTD 3862 02:54:56,297 --> 02:54:58,433 COMMITTEE MEMBERS WHO WERE 3863 02:54:58,433 --> 02:55:01,770 REALLY ESSENTIAL IN DEVELOPING 3864 02:55:01,770 --> 02:55:04,439 THESE RECOMMENDATIONS AND WHO 3865 02:55:04,439 --> 02:55:07,909 SOUGHT ADVICE OF PATIENT 3866 02:55:07,909 --> 02:55:09,411 POPULATIONS, OF ADVOCATES, OF 3867 02:55:09,411 --> 02:55:11,346 THEIR COLLEAGUES AND THANK YOU 3868 02:55:11,346 --> 02:55:20,155 ALL. LOOKING FORWARD TO THE 3869 02:55:20,155 --> 02:55:21,556 QUESTIONS. 3870 02:55:21,556 --> 02:55:22,891 >> RAISE YOU HAND IF YOU'D 3871 02:55:22,891 --> 02:55:25,093 LIKE TO ASK A QUESTION. WE ARE 3872 02:55:25,093 --> 02:55:27,328 MONITORING QUESTIONS COMING IN 3873 02:55:27,328 --> 02:55:32,567 LIVE FROM VIDEO CASTS. OUR FIRST 3874 02:55:32,567 --> 02:55:34,936 QUESTION HAS A HAND RAISED, 3875 02:55:34,936 --> 02:55:35,170 GENE. 3876 02:55:35,170 --> 02:55:37,238 >> YES, THANK YOU SO MUCH. 3877 02:55:37,238 --> 02:55:39,841 THANK YOU, EVERYONE, FOR 3878 02:55:39,841 --> 02:55:41,776 SPEAKING. I WANT TO ZERO IN ON 3879 02:55:41,776 --> 02:55:46,481 DRUG DISCOVERY AND USE 3880 02:55:46,481 --> 02:55:51,219 THERAPEUTICS TO PREVENT OR TREAT 3881 02:55:51,219 --> 02:56:01,763 FTD. THE DOCTOR HAD A NICE CHART 3882 02:56:08,403 --> 02:56:11,239 TO CONSIDER THIS. IF WE CONSIDER 3883 02:56:11,239 --> 02:56:14,075 THIS, WE SHOULD ALSO REALLY 3884 02:56:14,075 --> 02:56:16,878 CONSIDER THE NOT DRAMATIC AFFECT 3885 02:56:16,878 --> 02:56:20,682 OF RELASAL IN ALS. THOSE NOT 3886 02:56:20,682 --> 02:56:22,917 AWARE, 72, MY FAMILY SIMILAR 3887 02:56:22,917 --> 02:56:25,787 PACTED BY, THE MOST COMMON CAUSE 3888 02:56:25,787 --> 02:56:30,024 OF GENETIC FTD AND GENETIC ALS. 3889 02:56:30,024 --> 02:56:32,794 IF SOMEBODY HAS BFCT AND GET 3890 02:56:32,794 --> 02:56:36,064 DIAGNOSED ALS THEY WILL BE 3891 02:56:36,064 --> 02:56:37,765 PRESCRIBED (?) AS 3892 02:56:37,765 --> 02:56:39,267 DISEASE-MODIFYING THERAPY. YET 3893 02:56:39,267 --> 02:56:42,137 IF THE CAUSE OF THE DISEASE IS 3894 02:56:42,137 --> 02:56:45,140 CNR72 AND WORKS FOR ALS, WHY 3895 02:56:45,140 --> 02:56:47,475 WOULDN'T IT WORK FOR FTD. IF WE 3896 02:56:47,475 --> 02:56:48,409 ARE CONSIDERING 3897 02:56:48,409 --> 02:56:49,410 DISEASE-MODIFYING THERAPIES WE 3898 02:56:49,410 --> 02:56:51,479 SHOULD -- WHY ARE WE NOT 3899 02:56:51,479 --> 02:56:57,418 CONSIDERING RENASAL. ALSO I SO 3900 02:56:57,418 --> 02:56:58,353 APPRECIATE EVERYONE'S ATTENTION 3901 02:56:58,353 --> 02:57:01,789 THAT THERE'S DRUGS IN TRIAL FOR 3902 02:57:01,789 --> 02:57:06,427 ALS THAT MIGHT BE USEFUL IN FTD. 3903 02:57:06,427 --> 02:57:08,830 JUST TO BRING IT BACK, HOW ARE 3904 02:57:08,830 --> 02:57:13,101 WE GOING TO ENSURE THE CRYPTIC 3905 02:57:13,101 --> 02:57:17,372 AXON ANTI OLIOGO NUCLEOTIDE 3906 02:57:17,372 --> 02:57:21,309 THERAPIES IN TRIALS FOR ALS OR 3907 02:57:21,309 --> 02:57:26,181 SOON TO BE IN TRIAL, SHOW AFFECT 3908 02:57:26,181 --> 02:57:29,417 IN ADVANCED ALS, HOW WILL WE BE 3909 02:57:29,417 --> 02:57:31,886 SURE THOSE DRUGS MIGHT ONLY WORK 3910 02:57:31,886 --> 02:57:33,254 EARLIER IN THE DISEASE AND 3911 02:57:33,254 --> 02:57:35,190 PEOPLE WHO ARE PREDISPOSED TO 3912 02:57:35,190 --> 02:57:38,426 DEVELOPING ALS AND FTD. SO IT IS 3913 02:57:38,426 --> 02:57:39,661 NOT JUST THAT WE ARE WILLING TO 3914 02:57:39,661 --> 02:57:43,831 SEE A HOME RUN BUT HOW DO WE 3915 02:57:43,831 --> 02:57:45,533 GUARD AGAINST THESE DRUGS 3916 02:57:45,533 --> 02:57:46,901 WORKING EARLIER IN THE DISEASE 3917 02:57:46,901 --> 02:57:49,103 AND WITH URGENCY BECAUSE IF WE 3918 02:57:49,103 --> 02:57:51,339 DISCARD THOSE THERAPIES WITHOUT 3919 02:57:51,339 --> 02:57:53,708 AFFIRMING THEY MIGHT ONLY WORK 3920 02:57:53,708 --> 02:57:55,276 EARLIER, THEN HOW WILL WE EVER 3921 02:57:55,276 --> 02:58:03,785 KNOW? SO THANK YOU SO MUCH. 3922 02:58:03,785 --> 02:58:06,087 >> ADAM, WOULD YOU LIKE TO 3923 02:58:06,087 --> 02:58:06,854 RESPOND? 3924 02:58:06,854 --> 02:58:11,626 >> YEAH, WELL THANK YOU, 3925 02:58:11,626 --> 02:58:13,561 JEAN. THANK YOU FOR YOUR MANY 3926 02:58:13,561 --> 02:58:14,729 CONTRIBUTIONS TO EVERYTHING I 3927 02:58:14,729 --> 02:58:19,901 TALKED ABOUT FOR THOSE WHO DON'T 3928 02:58:19,901 --> 02:58:23,171 KNOW, THIS HAS BEEN PART OF 3929 02:58:23,171 --> 02:58:24,706 THESE DISCUSSIONS AND COME UP 3930 02:58:24,706 --> 02:58:26,474 WITH MANY FANTASTIC IDEAS WE ARE 3931 02:58:26,474 --> 02:58:29,410 TRYING TO INCORPORATE INTO OUR 3932 02:58:29,410 --> 02:58:31,846 FUTURE WORK. I COMPLETELY AGREE 3933 02:58:31,846 --> 02:58:34,749 WITH PRETTY MUCH EVERYTHING YOU 3934 02:58:34,749 --> 02:58:38,386 SAID. I WANTED TO HIGHLIGHT THE 3935 02:58:38,386 --> 02:58:41,222 STRENGTH OF THE PUBLIC-PRIVATE 3936 02:58:41,222 --> 02:58:42,357 PARTNERSHIP THAT IS FUNDED 3937 02:58:42,357 --> 02:58:43,891 THROUGH THE NATIONAL INSTITUTES 3938 02:58:43,891 --> 02:58:45,727 OF HEALTH THROUGH ALL FTD, 3939 02:58:45,727 --> 02:58:47,729 THROUGH THE NEW PSP PLATFORM 3940 02:58:47,729 --> 02:58:51,132 TRIAL AND WHAT WE HOPE TO DO 3941 02:58:51,132 --> 02:58:54,135 MORE IN FUTURE BECAUSE TO ANSWER 3942 02:58:54,135 --> 02:58:55,436 MANY OF THE THERAPEUTICS 3943 02:58:55,436 --> 02:58:57,839 QUESTIONS THAT YOU BRING UP, WE 3944 02:58:57,839 --> 02:58:59,274 REALLY NEED NOT JUST INDUSTRY 3945 02:58:59,274 --> 02:59:03,144 SUPPORT BUT WE NEED THE NIH TO 3946 02:59:03,144 --> 02:59:06,447 HELP US TO REALLY BRING THESE 3947 02:59:06,447 --> 02:59:08,316 TREATMENTS INTO SCENARIOS THAT 3948 02:59:08,316 --> 02:59:10,451 MAY NOT BE AS ATTRACTIVE TO 3949 02:59:10,451 --> 02:59:11,719 INDUSTRY TO DO ON THEIR OWN. 3950 02:59:11,719 --> 02:59:14,088 THIS IS WHERE THIS PARTNERSHIP 3951 02:59:14,088 --> 02:59:18,426 IS SO IMPORTANT BETWEEN YOU AND 3952 02:59:18,426 --> 02:59:22,463 US AT THE NIH ACADEMIC 3953 02:59:22,463 --> 02:59:29,270 INVESTIGATORS, THE COMMUNITY AND 3954 02:59:29,270 --> 02:59:35,810 INDUSTRY SO THANK YOU SO MUCH. 3955 02:59:35,810 --> 02:59:37,045 >> I DON'T KNOW IF THERE IS 3956 02:59:37,045 --> 02:59:42,016 ANY -- SORRY, OKAY. SINCE THE 3957 02:59:42,016 --> 02:59:44,585 QUESTION FROM VIDEO CAST IS 3958 02:59:44,585 --> 02:59:47,822 SINCE AM LLOYD PLAQUE AND TA 3959 02:59:47,822 --> 02:59:49,257 NERVE TREATMENTS ONLY PROVIDE 3960 02:59:49,257 --> 02:59:51,826 MODEST SYMPTOM REDUCTIONS WITH 3961 02:59:51,826 --> 02:59:54,262 SEVERE SIDE EFFECTS WHAT GOOD 3962 02:59:54,262 --> 02:59:56,197 COULD THEY DO FOR FTD. 3963 02:59:56,197 --> 02:59:58,599 >> MAYBELY TAKE THAT ONE TOO. 3964 02:59:58,599 --> 03:00:01,903 I DIDN'T MEAN TO SUGGEST AM 3965 03:00:01,903 --> 03:00:06,441 LLOYD TREATMENTS BE USED FOR FTD 3966 03:00:06,441 --> 03:00:09,811 BECAUSE THERE IS NO AM LLOYD IN 3967 03:00:09,811 --> 03:00:11,779 FTD. I DON'T AGREE THEY PROVIDE 3968 03:00:11,779 --> 03:00:13,014 MODEST BENEFITS. I THINK FOR THE 3969 03:00:13,014 --> 03:00:15,149 RIGHT PEOPLE THEY CAN BE QUITE 3970 03:00:15,149 --> 03:00:16,217 IMPACTFUL. BUT WHAT I WAS TRYING 3971 03:00:16,217 --> 03:00:20,521 TO ALLUDE TO IS THE IDEA THAT IN 3972 03:00:20,521 --> 03:00:23,224 ALZHEIMER'S DISEASE THE NIH 3973 03:00:23,224 --> 03:00:24,792 SUPPORTED THE DEVELOPMENT OF 3974 03:00:24,792 --> 03:00:27,261 MANY BIO MARKERS SUCH AS BRAIN 3975 03:00:27,261 --> 03:00:29,330 SCANS AND BLOOD TESTS WE CAN 3976 03:00:29,330 --> 03:00:30,765 USE. THESE ARE VERY INSTRUCTIVE 3977 03:00:30,765 --> 03:00:33,101 FOR US. WE ARE BRINGING THESE 3978 03:00:33,101 --> 03:00:35,737 TECHNOLOGIES INTO FTD. WE THINK 3979 03:00:35,737 --> 03:00:37,271 THAT REGARDLESS ABOUT HOW YOU 3980 03:00:37,271 --> 03:00:39,507 FEEL ABOUT THE ALZHEIMER'S 3981 03:00:39,507 --> 03:00:42,877 THERAPIES, THEY DO PAVE THE WAY 3982 03:00:42,877 --> 03:00:47,014 AND PROVIDE REALLY A ROAD MAP 3983 03:00:47,014 --> 03:00:57,492 THAT WE WILL ACCELERATE THE 3984 03:01:00,528 --> 03:01:01,696 DEVELOPMENTS. 3985 03:01:01,696 --> 03:01:03,164 >> YOU CAN GO AHEAD WITH THE 3986 03:01:03,164 --> 03:01:05,400 NEXT QUESTION. I WILL JUST -- 3987 03:01:05,400 --> 03:01:06,200 ONLINE ALREADY -- 3988 03:01:06,200 --> 03:01:09,103 >> OKAY, GREAT. I THINK THE 3989 03:01:09,103 --> 03:01:13,107 NEXT QUESTION IS STEVEN HAD HIS 3990 03:01:13,107 --> 03:01:13,474 HAND OUT. 3991 03:01:13,474 --> 03:01:15,410 >> YEAH, THANKS FOR ALLOWING 3992 03:01:15,410 --> 03:01:16,978 ME TO ASK ANOTHER ONE. SORT OF 3993 03:01:16,978 --> 03:01:23,785 ON THE TOPIC OF THE LAST FEW 3994 03:01:23,785 --> 03:01:30,591 QUESTIONS. A WAY TO IMPROVE BOTH 3995 03:01:30,591 --> 03:01:34,228 IS BRAIN PENETRATION OF DRUG AND 3996 03:01:34,228 --> 03:01:37,465 DIFFUSE TO OTHER ORGANS. IS IT 3997 03:01:37,465 --> 03:01:39,100 OF INTEREST TO THIS GROUP TO 3998 03:01:39,100 --> 03:01:41,369 FORMALLY SUPPORT STUDY OF THE 3999 03:01:41,369 --> 03:01:45,306 BLOOD BRAIN BARRIER INCLUDING 4000 03:01:45,306 --> 03:01:48,910 APPLIED IN BASIC RESEARCH SO WE 4001 03:01:48,910 --> 03:01:50,278 CAN WORK ON THAT? 4002 03:01:50,278 --> 03:01:51,712 >> I DON'T MIND JUMPING IN 4003 03:01:51,712 --> 03:01:54,449 AND ADDRESSING THAT. SO GLAD YOU 4004 03:01:54,449 --> 03:02:00,655 BROUGHT THAT UP. I DID MENTION 4005 03:02:00,655 --> 03:02:01,923 END THEEL YELL CELLS WHICH MAKE 4006 03:02:01,923 --> 03:02:04,592 UP THE BLOOD BRAIN BARRIER. I 4007 03:02:04,592 --> 03:02:06,427 ALMOST ED THAT IDEA LIKE A 4008 03:02:06,427 --> 03:02:07,528 HELMET SURROUNDING THE BRAIN 4009 03:02:07,528 --> 03:02:09,964 THAT PREVENTED CELLS AND 4010 03:02:09,964 --> 03:02:11,632 BIOLOGICS AND DRUGS FROM GETTING 4011 03:02:11,632 --> 03:02:15,436 IN. IN FACT, , THE BARRIER IS 4012 03:02:15,436 --> 03:02:17,538 THE END THEEL YELL CELLS THAT 4013 03:02:17,538 --> 03:02:22,443 HELP. WE KNOW THE BLOOD BRAIN 4014 03:02:22,443 --> 03:02:23,878 BARRIER BECOMES LEAKY AND IS A 4015 03:02:23,878 --> 03:02:25,079 BIG PART OF THIS DISEASE SO IT 4016 03:02:25,079 --> 03:02:28,015 IS CRITICAL TO STUDY BLOOD BRAIN 4017 03:02:28,015 --> 03:02:30,151 BARRIER. THERE IS A GREAT LAB AT 4018 03:02:30,151 --> 03:02:32,019 STANFORD THAT'S STUDIED THIS IN 4019 03:02:32,019 --> 03:02:35,089 CONTEXT OF BRAIN MUTATIONS. I'M 4020 03:02:35,089 --> 03:02:36,023 ORGANIZING A RESEARCH CONFERENCE 4021 03:02:36,023 --> 03:02:40,094 FOR NEXT YEAR ON FRONTAL 4022 03:02:40,094 --> 03:02:41,395 TEMPORAL DEMENTIA. WE ARE 4023 03:02:41,395 --> 03:02:42,997 PUTTING TOGETHER THE PROGRAM 4024 03:02:42,997 --> 03:02:44,899 NOW. ONE OF THE SESSIONS IS 4025 03:02:44,899 --> 03:02:53,241 GOING TO BE DEVOTED TO VASCULAR 4026 03:02:53,241 --> 03:02:53,975 BLOOD BRAIN BARRIER WORK TO LOOK 4027 03:02:53,975 --> 03:02:57,545 FORWARD TO ADVANCE ING THAT 4028 03:02:57,545 --> 03:02:57,778 AREA. 4029 03:02:57,778 --> 03:03:03,885 >> THANK YOU. 4030 03:03:03,885 --> 03:03:05,486 >> CONGRATULATIONS TO THE 4031 03:03:05,486 --> 03:03:07,154 NDINS AND ALL YOU. I THINK THE 4032 03:03:07,154 --> 03:03:09,457 RECOMMENDATIONS YOU HAVE COME UP 4033 03:03:09,457 --> 03:03:11,192 WITH, I THINK ARE IMPORTANT 4034 03:03:11,192 --> 03:03:13,628 TOUCHSTONES FOR THE FIELD TO BE 4035 03:03:13,628 --> 03:03:15,062 PAYING ATTENTION. THEY ARE JUST 4036 03:03:15,062 --> 03:03:16,697 WELL PUT TOGETHER AND ALSO 4037 03:03:16,697 --> 03:03:17,832 REFLECT THE HOPE THAT COMES FROM 4038 03:03:17,832 --> 03:03:19,634 THE INCREDIBLE PROGRESS THAT HAS 4039 03:03:19,634 --> 03:03:22,837 BEEN ENABLED LARGELY FROM 4040 03:03:22,837 --> 03:03:24,138 NIH-FUNDED TO ACADEMIC RESEARCH 4041 03:03:24,138 --> 03:03:25,506 CENTERS IN THE UNITED STATES. I 4042 03:03:25,506 --> 03:03:29,644 THINK IT BRINGS SO MUCH HOPE TO 4043 03:03:29,644 --> 03:03:30,678 FAMILIES AND COMMUNITIES THEY 4044 03:03:30,678 --> 03:03:32,580 SUPPORT. I NEED TO ASK ONE 4045 03:03:32,580 --> 03:03:35,116 QUESTION WHICH IS FAMILIES WE 4046 03:03:35,116 --> 03:03:36,918 SUPPORT DON'T JUST COME FROM 4047 03:03:36,918 --> 03:03:39,387 COGNITIVE BEHAVE YOUR OR 4048 03:03:39,387 --> 03:03:40,521 NEUROLOGY CLINICS. THE FIELD HAS 4049 03:03:40,521 --> 03:03:42,256 DONE SO MUCH WHERE THE NETWORK 4050 03:03:42,256 --> 03:03:44,892 IS TAPPING INTO THE ALZHEIMER'S 4051 03:03:44,892 --> 03:03:45,593 INFRASTRUCTURE, LIKE NICK READ 4052 03:03:45,593 --> 03:03:49,063 FOR EXAMPLE, FOR BIOSAMPLE 4053 03:03:49,063 --> 03:03:52,066 REPOSITORIES AND THE NAC CENTERS 4054 03:03:52,066 --> 03:03:55,803 AND ADRCs. OUR PATIENTS AND 4055 03:03:55,803 --> 03:03:58,105 FAMILIES ARE SEEN IN PARKINSON'S 4056 03:03:58,105 --> 03:04:01,142 CLINICS AND ALS AND ALZHEIMER'S 4057 03:04:01,142 --> 03:04:03,444 CLINICS, NOT TO MENTION IF THEY 4058 03:04:03,444 --> 03:04:04,946 HAVE BEEN MISDIAGNOSE ED IN 4059 03:04:04,946 --> 03:04:07,048 PSYCHIATRIC CLINICS. A LOT OF 4060 03:04:07,048 --> 03:04:07,848 THE RESEARCH INVOLVES BRINGING 4061 03:04:07,848 --> 03:04:10,451 IN BIOSAMPLES AND UNDERSTANDING 4062 03:04:10,451 --> 03:04:12,219 THE EPIDEMIOLOGY AND ALL OF 4063 03:04:12,219 --> 03:04:13,988 THESE DIFFERENT RESEARCH 4064 03:04:13,988 --> 03:04:15,356 NETWORKS TENDS TO HAVE LARGE 4065 03:04:15,356 --> 03:04:17,091 INFRASTRUCTURE THAT IS 4066 03:04:17,091 --> 03:04:18,292 INDEPENDENT OF ONE ANOTHER AND 4067 03:04:18,292 --> 03:04:20,428 THE FTD FIELD TENDS TO TRY TO 4068 03:04:20,428 --> 03:04:22,229 BRIDGE ACROSS THEM. CAN YOU 4069 03:04:22,229 --> 03:04:23,764 COMMENT ON HOW WE CAN DO BETTER 4070 03:04:23,764 --> 03:04:26,601 AT THAT? IS THIS RELYING ON DATA 4071 03:04:26,601 --> 03:04:29,003 SCIENCE AND AI TO FIND WHAT DATA 4072 03:04:29,003 --> 03:04:30,938 IS WHERE? IS IT ON THE 4073 03:04:30,938 --> 03:04:32,607 DIAGNOSTIC TOOLS, MINIMAL DATA 4074 03:04:32,607 --> 03:04:34,742 SET S SO WE CAN HAVE SOME 4075 03:04:34,742 --> 03:04:36,210 ABILITY COMBINE OR BETTER 4076 03:04:36,210 --> 03:04:39,714 ABILITY TO COMBINE DATA ACROSS 4077 03:04:39,714 --> 03:04:41,182 DISPARATE PLACES? IT IS A HARD 4078 03:04:41,182 --> 03:04:43,150 PROBLEM TO SOLVE BUT FOR FTD 4079 03:04:43,150 --> 03:04:45,419 FAMILIES IT IS WHAT WE ARE GOING 4080 03:04:45,419 --> 03:04:46,120 TO NEED. 4081 03:04:46,120 --> 03:04:49,857 >> THANK YOU, RESA. A REALLY 4082 03:04:49,857 --> 03:04:50,925 CRITICAL POINT THAT WAS 4083 03:04:50,925 --> 03:04:53,260 SOMETHING THAT CAME UP OVER AND 4084 03:04:53,260 --> 03:04:56,097 OVER IN OUR DISCUSSIONS AROUND 4085 03:04:56,097 --> 03:04:59,100 SORT OF HOW -- TO BREAK DOWN 4086 03:04:59,100 --> 03:05:00,368 BARRIERS, HOW TO INTEGRATE AND I 4087 03:05:00,368 --> 03:05:01,969 THINK THE GROUP TRIED TO THINK 4088 03:05:01,969 --> 03:05:06,073 ABOUT THIS IN A FEW WAYS THAT I 4089 03:05:06,073 --> 03:05:08,709 CAN MENTION. ONE IS TO ENCOURAGE 4090 03:05:08,709 --> 03:05:11,012 THE USE OF ENGAGEMENT WITH 4091 03:05:11,012 --> 03:05:13,080 PUBLIC PRIVATE PARTNERSHIPS THAT 4092 03:05:13,080 --> 03:05:18,052 HAVE BEEN SO SUCCESSFUL FOR DATA 4093 03:05:18,052 --> 03:05:23,624 REPOSITORIES AND INTEGRATED 4094 03:05:23,624 --> 03:05:28,362 STUDIES. YOU KNOW, TARGET ALS. 4095 03:05:28,362 --> 03:05:30,097 SO BRIDGING THOSE UNDER SIMILAR 4096 03:05:30,097 --> 03:05:32,266 -- POTENTIALS TO BRING THOSE 4097 03:05:32,266 --> 03:05:36,404 UNDER A SIMILAR PLATFORM HAS THE 4098 03:05:36,404 --> 03:05:38,005 POTENTIAL TO CONNECT INDIVIDUALS 4099 03:05:38,005 --> 03:05:40,474 AND SAMPLES AND GET AT SOME OF 4100 03:05:40,474 --> 03:05:42,176 THESE QUESTIONS BUT I THINK THIS 4101 03:05:42,176 --> 03:05:45,579 IS ALSO WHERE DR. IRWIN TALKED 4102 03:05:45,579 --> 03:05:48,549 ABOUT SORT OF INEXPENSIVE, YOU 4103 03:05:48,549 --> 03:05:51,485 KNOW, BIO MARKERS, TESTS THAT 4104 03:05:51,485 --> 03:05:55,056 CAN BE DONE, ENABLED ACROSS 4105 03:05:55,056 --> 03:05:56,357 DIFFERENT CENTER TYPES. I THINK 4106 03:05:56,357 --> 03:05:59,527 THIS IS AN AREA OF GREAT 4107 03:05:59,527 --> 03:06:01,262 IMPORTANCE. IF ANYONE ELSE WANTS 4108 03:06:01,262 --> 03:06:05,700 TO COMMENT, PLEASE DO. 4109 03:06:05,700 --> 03:06:07,401 >> MAYBE I'LL BRIEFLY ECHO 4110 03:06:07,401 --> 03:06:10,905 THAT AND SAY THE BIOLOGICAL 4111 03:06:10,905 --> 03:06:12,973 CHARACTERIZATION NOMENCLATURE 4112 03:06:12,973 --> 03:06:14,108 CLASSIFICATION, THOSE EFFORTS I 4113 03:06:14,108 --> 03:06:16,877 THINK WILL HELP ACCELERATE AS 4114 03:06:16,877 --> 03:06:18,345 THE DEMENTIA NOMENCLATURE 4115 03:06:18,345 --> 03:06:19,947 INITIATIVE. ONE OF THE FEEDBACK 4116 03:06:19,947 --> 03:06:22,416 FROM THAT GROUP WAS THAT IN THE 4117 03:06:22,416 --> 03:06:24,285 RESEARCH REALM, REQUESTING 4118 03:06:24,285 --> 03:06:25,986 SAMPLES AND WHAT TERMS WE USE 4119 03:06:25,986 --> 03:06:31,759 CAN SOMETIME BES S BE A BARRIER. 4120 03:06:31,759 --> 03:06:35,596 THE MORE WE DEVELOP BIOLOGICAL 4121 03:06:35,596 --> 03:06:36,130 CAN HARMONIZE AND BETTER 4122 03:06:36,130 --> 03:06:38,532 COMMUNICATE ACROSS DISCIPLINES 4123 03:06:38,532 --> 03:06:41,802 OF NEUROLOGY AND OTHER FORMS OF 4124 03:06:41,802 --> 03:06:52,213 MEDICINE AND RESEARCH. 4125 03:07:05,993 --> 03:07:06,260 4126 03:07:06,260 --> 03:07:07,027 4127 03:07:07,027 --> 03:07:07,495 >> SUSAN. 4128 03:07:07,495 --> 03:07:09,964 >> I WANTED TO FOLLOW UP. ON 4129 03:07:09,964 --> 03:07:11,165 ALL THE DIFFERENT FORMS OF 4130 03:07:11,165 --> 03:07:12,366 DEMENTIA WE WILL BE DISCUSSING 4131 03:07:12,366 --> 03:07:14,568 OVER THE COURSE OF THIS SUMMIT, 4132 03:07:14,568 --> 03:07:15,903 ALTHOUGH WE DON'T KNOW THE 4133 03:07:15,903 --> 03:07:18,572 PREVALENCE OF FTD, AS YOU 4134 03:07:18,572 --> 03:07:19,774 APPROPRIATELY ADDRESS IN 4135 03:07:19,774 --> 03:07:20,641 RECOMMENDATION, WE CAN BE SURE 4136 03:07:20,641 --> 03:07:23,677 THIS IS PROBABLY, BY FAR, THE 4137 03:07:23,677 --> 03:07:30,417 LEAST PREVIOUS LE PREF /* -- 4138 03:07:30,417 --> 03:07:32,186 PREVALENT. I WANTED TO CALL OUT 4139 03:07:32,186 --> 03:07:33,254 HOW MUCH THE COMMUNITY 4140 03:07:33,254 --> 03:07:35,322 APPRECIATES THE NIH'S INVESTMENT 4141 03:07:35,322 --> 03:07:37,925 IN FTD AND HOW WE RECOGNIZE THAT 4142 03:07:37,925 --> 03:07:41,295 IT IS STUDIES THAT NIH HAS 4143 03:07:41,295 --> 03:07:44,031 BACKED, ALONG WITH THE PASSION 4144 03:07:44,031 --> 03:07:47,001 OF THIS COMMUNITY. IT HAS LED TO 4145 03:07:47,001 --> 03:07:50,805 ADVANCES AND SPECIFICALLY TO 4146 03:07:50,805 --> 03:07:52,807 BIOPHARMA'S ADVANCEMENT IN FTD. 4147 03:07:52,807 --> 03:07:55,576 IT IS GOING TO TAKE, AS YOU HAVE 4148 03:07:55,576 --> 03:07:59,079 ALLUDED TO, THE PUBLIC PRIVATE 4149 03:07:59,079 --> 03:08:00,614 PARTNERSHIPS TO GET US THROUGH 4150 03:08:00,614 --> 03:08:02,883 THE FIRST THERAPEUTICSES. A NOTE 4151 03:08:02,883 --> 03:08:04,285 OF APPRECIATION FOR ALL-TIME YOU 4152 03:08:04,285 --> 03:08:07,788 HAVE PUT IN, AS WELL AS REALLY 4153 03:08:07,788 --> 03:08:09,423 THE DECADES BASIC AND 4154 03:08:09,423 --> 03:08:10,424 TRANSLATIONAL RESEARCH THAT HAS 4155 03:08:10,424 --> 03:08:13,127 GOTTEN US AS FAR AS WE ARE. AND 4156 03:08:13,127 --> 03:08:20,868 WILL GET US TO THOSE APPROVED 4157 03:08:20,868 --> 03:08:24,071 THERAPEUTICSES. 4158 03:08:24,071 --> 03:08:34,515 >> THANK YOU. COMMENTS OR 4159 03:08:34,515 --> 03:08:34,849 QUESTIONS? 4160 03:08:34,849 --> 03:08:36,317 >> I HAVE ONE COMMENT THAT 4161 03:08:36,317 --> 03:08:38,052 CAME IN ONLINE I CAN READ AND 4162 03:08:38,052 --> 03:08:39,720 MAYBE TAKE -- END AND MAYBE TAKE 4163 03:08:39,720 --> 03:08:41,522 A TWO-MINUTE BREAK AND TRY TO 4164 03:08:41,522 --> 03:08:44,058 START BACK UP AS QUICK AS WE 4165 03:08:44,058 --> 03:08:45,626 CAN. THERE'S ONE -- I WILL READ 4166 03:08:45,626 --> 03:08:47,995 THIS QUICK. NOT A QUESTION, JUST 4167 03:08:47,995 --> 03:08:49,763 COMMENT. FTD IS UNIQUELY CRUEL 4168 03:08:49,763 --> 03:08:50,798 BECAUSE IT OFTEN AFFECTS PERSON 4169 03:08:50,798 --> 03:08:52,733 IN PRIME OF THEIR CAREER AND 4170 03:08:52,733 --> 03:08:54,869 COST OF LOST PRODUCTIVITY, 4171 03:08:54,869 --> 03:08:57,438 INCOME IS HUGELY IMPACTFUL FOR 4172 03:08:57,438 --> 03:09:00,074 FAMILIES, OFTEN BOTH PATIENT AND 4173 03:09:00,074 --> 03:09:02,509 CAREGIVER ARE FORCED TO LEAVE 4174 03:09:02,509 --> 03:09:07,014 CAREERS AND STUCK FOR MANY TOR 4175 03:09:07,014 --> 03:09:11,919 YEARS. NIH, HELP US END FTD. 4176 03:09:11,919 --> 03:09:22,463 >> THANK YOU. BRANDON. UNMUTE 4177 03:09:27,468 --> 03:09:37,878 YOUR CAMERA AND MICROPHONE. 4178 03:09:43,417 --> 03:09:46,453 >> HE'S OPEN. 4179 03:09:46,453 --> 03:09:46,654 4180 03:09:46,654 --> 03:09:50,090 >> MAYBE WHILE BRANDON IS 4181 03:09:50,090 --> 03:09:52,459 TRYING TO UNMUTE, I JUST WANT TO 4182 03:09:52,459 --> 03:09:53,727 TAKE THIS OPPORTUNITY AGAIN TO 4183 03:09:53,727 --> 03:09:57,498 THANK THE COMMITTEE AND ALSO 4184 03:09:57,498 --> 03:10:01,568 THE, YOU KNOW, THAT OUR WORK 4185 03:10:01,568 --> 03:10:05,406 COULDN'T BE DONE WITHOUT THE 4186 03:10:05,406 --> 03:10:09,476 PATIENT ADVOCACY GROUPS, PEOPLE 4187 03:10:09,476 --> 03:10:11,578 WITH LIVED EXPERIENCES. 4188 03:10:11,578 --> 03:10:13,347 INCREDIBLE AND POWERFUL AND 4189 03:10:13,347 --> 03:10:16,717 REALLY REVEALING HOW, YOU KNOW, 4190 03:10:16,717 --> 03:10:18,819 HOW REAL THESE -- THIS DISEASE 4191 03:10:18,819 --> 03:10:21,588 IS AND HOW BROAD THE IMPACT IS 4192 03:10:21,588 --> 03:10:26,360 AND HOW URGENT IT IS TO TREAT 4193 03:10:26,360 --> 03:10:31,865 THESE DISEASES. 4194 03:10:31,865 --> 03:10:34,201 >> I THINK WE WILL TAKE A 4195 03:10:34,201 --> 03:10:36,270 TWO-MINUTE BREAK AND COME BACK 4196 03:10:36,270 --> 03:10:38,806 WITH THE NEXT SESSION. SORRY, 4197 03:10:38,806 --> 03:10:41,909 BRANDON, FOR TECHNOLOGY NOT 4198 03:10:41,909 --> 03:10:46,769 WORKING FOR YOU. 4199 03:10:48,756 --> 03:10:50,257 >> WELCOME BACK, A SHORT 4200 03:10:50,257 --> 03:10:51,458 BREAK. WE ARE ABOUT EIGHT 4201 03:10:51,458 --> 03:11:03,206 MINUTES BEHIND AND TRY TO MAKE 4202 03:11:03,206 --> 03:11:04,908 THAT UP IN THE BREAK. APOLOGIES 4203 03:11:04,908 --> 03:11:10,814 FOR NOT HAVING A LONGER BREAK. 4204 03:11:10,814 --> 03:11:12,115 KRISTIN, ARE YOU ABLE TO TURN ON 4205 03:11:12,115 --> 03:11:12,715 YOUR CAMERA? 4206 03:11:12,715 --> 03:11:15,351 >> I JUST HAD IT ON. DO YOU 4207 03:11:15,351 --> 03:11:16,386 NOT SEE ME? 4208 03:11:16,386 --> 03:11:19,556 >> IT MAY BE ON ME THAT. IS 4209 03:11:19,556 --> 03:11:23,126 GREAT. I HEAR YOU, THANK YOU. 4210 03:11:23,126 --> 03:11:28,665 >> GREAT. CAN I GET STARTED? 4211 03:11:28,665 --> 03:11:30,200 >> YEP, DEFINITELY. 4212 03:11:30,200 --> 03:11:31,267 >> GREAT, THANK YOU. THANK 4213 03:11:31,267 --> 03:11:32,569 YOU EVERYONE FOR STICKING WITH 4214 03:11:32,569 --> 03:11:34,404 US. I KNOW THESE DAYIES CAN FEEL 4215 03:11:34,404 --> 03:11:37,907 LONG. I'M SO HONORED TO BE ABLE 4216 03:11:37,907 --> 03:11:40,977 TO HAVE THIS OPPORTUNITY TO 4217 03:11:40,977 --> 03:11:42,812 SHARE OUR SUBCOMMITTEE'S 4218 03:11:42,812 --> 03:11:47,116 RECOMMENDATION ON POST-TRAUMATIC 4219 03:11:47,116 --> 03:11:49,219 BRAIN INJURY NEURODEGENERATION 4220 03:11:49,219 --> 03:11:50,720 AND ALZHEIMER'S AND RELATED 4221 03:11:50,720 --> 03:11:52,489 DISORDERS. I HAVE NO 4222 03:11:52,489 --> 03:11:55,859 DISCLOSURES. WE JUST WANTED TO 4223 03:11:55,859 --> 03:11:56,659 ACKNOWLEDGE THAT WE USED 4224 03:11:56,659 --> 03:11:58,161 SPECIFIC PROGRAM TO GENERATE 4225 03:11:58,161 --> 03:12:01,931 OTHER FIGURES IN THIS 4226 03:12:01,931 --> 03:12:04,667 PRESENTATION. THIS SLIDE SHOWS A 4227 03:12:04,667 --> 03:12:07,036 CONDENSED OVERVIEW OF OUR FOUR 4228 03:12:07,036 --> 03:12:08,004 RECOMMENDATIONS WHICH REALLY 4229 03:12:08,004 --> 03:12:09,672 EMPHASIZED THE NEED TO INVEST IN 4230 03:12:09,672 --> 03:12:10,707 INFRASTRUCTURE AND WHAT IS STILL 4231 03:12:10,707 --> 03:12:13,076 A RELATIVELY NEW AREA OF 4232 03:12:13,076 --> 03:12:16,145 RESEARCH. WE HAVE MADE SOME 4233 03:12:16,145 --> 03:12:17,146 RAPID ADVANCEMENTS AND TO 4234 03:12:17,146 --> 03:12:20,049 CONTINUE ON THIS TRAJECTORY WILL 4235 03:12:20,049 --> 03:12:21,885 REQUIRE INTER DISCIPLINARY 4236 03:12:21,885 --> 03:12:24,821 COLLABORATION ACROSS TBI AND 4237 03:12:24,821 --> 03:12:27,423 DEMENTIA COMMUNITIES, 4238 03:12:27,423 --> 03:12:30,260 MULTI MODAL AND TRANSLATION OF 4239 03:12:30,260 --> 03:12:37,834 KNOWLEDGE INTO CLINICAL SETTINGS 4240 03:12:37,834 --> 03:12:40,003 AS WELL AS SHARING KNOWLEDGE. 4241 03:12:40,003 --> 03:12:43,473 TBI IS A MAJOR HEALTH PRIORITY. 4242 03:12:43,473 --> 03:12:47,443 NOTE THAT ALSO TBI IN OLDER 4243 03:12:47,443 --> 03:12:49,779 ADULTS IS EXCEEDING POPULATION 4244 03:12:49,779 --> 03:12:52,649 GROWTH AND MILLIONS OF TRAUMATIC 4245 03:12:52,649 --> 03:12:53,816 BRAIN INJURIES ARE NOT COUNTED 4246 03:12:53,816 --> 03:12:55,451 IN THESE ESTIMATES INCLUDING 4247 03:12:55,451 --> 03:12:57,487 INJURIES SUSTAINED IN MILITARY 4248 03:12:57,487 --> 03:13:00,089 COMBAT, THOSE FOR WHICH CARE IS 4249 03:13:00,089 --> 03:13:02,992 NOT SOUGHT OR RECEIVED AND 4250 03:13:02,992 --> 03:13:05,061 INJURIES THAT ARE INTENTIONALLY 4251 03:13:05,061 --> 03:13:06,696 CONCEALED, SUCH AS INJURIES 4252 03:13:06,696 --> 03:13:10,900 SUSTAINED IN CONTEXT OF INTIMATE 4253 03:13:10,900 --> 03:13:17,140 PARTNER VIOLENCE. WE WANT TO 4254 03:13:17,140 --> 03:13:22,011 CLARIFY TERMS RELEVANT, SO 4255 03:13:22,011 --> 03:13:25,048 REPETITIVE HEAD IMPACT, RHI 4256 03:13:25,048 --> 03:13:26,950 REFERS TO REPEATED IMPACTS TO 4257 03:13:26,950 --> 03:13:29,319 THE HEAD INCLUDING CONTACT 4258 03:13:29,319 --> 03:13:30,320 SPORTS, PERHAPS SIMILAR TO 4259 03:13:30,320 --> 03:13:34,691 EXPERIENCE ED IN MILITARY BLAST 4260 03:13:34,691 --> 03:13:38,428 EXPOSURE OR IN CONTEXT INVOLVING 4261 03:13:38,428 --> 03:13:39,996 PARTNER VIOLENCE. THESE HITS TO 4262 03:13:39,996 --> 03:13:41,364 THE HEAD DO NOT RESULT IN 4263 03:13:41,364 --> 03:13:44,968 SYMPTOMS OF A TRAUMATIC BRAIN 4264 03:13:44,968 --> 03:13:46,803 INJURY. ON THE OTHER HAND 4265 03:13:46,803 --> 03:13:48,071 TRAUMATIC BRAIN INJURY IS AN 4266 03:13:48,071 --> 03:13:50,006 ISOLATED BLOW OR INJURY TO THE 4267 03:13:50,006 --> 03:13:52,642 HEAD OR NECK THAT RESULTS IN 4268 03:13:52,642 --> 03:13:56,546 LOSS OR ALTERATION OF 4269 03:13:56,546 --> 03:13:59,048 CONSCIOUSNESS. NEXT SLIDE. THE 4270 03:13:59,048 --> 03:14:01,951 ACUTE AND CHRONIC SYMPTOMS OF 4271 03:14:01,951 --> 03:14:04,153 TBI CAN RANGE CONSIDERABLY SO 4272 03:14:04,153 --> 03:14:07,991 MOST PEOPLE WITH A MILD TBI 4273 03:14:07,991 --> 03:14:08,958 RECOVER COMPLETELY AND I WILL 4274 03:14:08,958 --> 03:14:12,662 NOTE THAT ONGOING NIH AND NINDS 4275 03:14:12,662 --> 03:14:19,636 EFFORTS TO IMPROVE TDI SEVERITY 4276 03:14:19,636 --> 03:14:21,037 CLASSIFICATION INDICATES IT 4277 03:14:21,037 --> 03:14:23,172 DOESN'T ALWAYS ALIGN WITH TBI 4278 03:14:23,172 --> 03:14:25,008 SEVERITY. MILD TBI HAS BEEN 4279 03:14:25,008 --> 03:14:28,645 ASSOCIATED WITH DEMENTIA RISK IN 4280 03:14:28,645 --> 03:14:32,548 SOME STUDIES. NEXT, RHI, WHICH I 4281 03:14:32,548 --> 03:14:34,017 SHOULD NOTE IS ALSO PRESENT AND 4282 03:14:34,017 --> 03:14:36,853 -- ADVANCE, THERE WE GO. IS ALSO 4283 03:14:36,853 --> 03:14:38,755 PRESENT IN SUBSTANTIAL 4284 03:14:38,755 --> 03:14:39,856 PROPORTION OF PEOPLE WHO 4285 03:14:39,856 --> 03:14:42,425 SUSTAINED A SINGLE TBI, ABOUT 4286 03:14:42,425 --> 03:14:44,694 HALF AND SOME OF OUR STUDIES 4287 03:14:44,694 --> 03:14:47,063 HAVE SUSTAINED EXTENSIVE 4288 03:14:47,063 --> 03:14:49,365 EXPOSURE TO RHI, WHICH DOES NOT 4289 03:14:49,365 --> 03:14:51,067 ITSELF RESULT IN IMMEDIATE 4290 03:14:51,067 --> 03:14:53,836 SYMPTOMS IN MOST CASES BUT 4291 03:14:53,836 --> 03:14:55,138 COMPELLING EVIDENCE DOES SUGGEST 4292 03:14:55,138 --> 03:15:01,310 A SUBSET OF THOSE WITH RF RHI 4293 03:15:01,310 --> 03:15:02,912 EXPOSURE DEVELOP DECLINE LATER 4294 03:15:02,912 --> 03:15:06,315 IN LIFE. THIS IS JUST A SNAPSHOT 4295 03:15:06,315 --> 03:15:09,285 OF FIVE-YEAR OUTCOMES FROM THE 4296 03:15:09,285 --> 03:15:10,820 NIDLER-FUNDED TBI SYSTEMS WHERE 4297 03:15:10,820 --> 03:15:12,722 YOU CAN SEE AMONG SURVIVORS OF 4298 03:15:12,722 --> 03:15:16,659 MODERATE TO SEVERE TBI, NEARLY A 4299 03:15:16,659 --> 03:15:19,629 THIRD DECLINE WITHIN FIVE YEARS, 4300 03:15:19,629 --> 03:15:22,165 BUT OVER A QUARTER CONTINUE TO 4301 03:15:22,165 --> 03:15:26,335 IMPROVE. WE NEED TO KNOW WHAT IS 4302 03:15:26,335 --> 03:15:28,638 DRIVING THESE HETEROGENOUS 4303 03:15:28,638 --> 03:15:32,208 CHRONIC TRAJECTORIES. NEXT. 4304 03:15:32,208 --> 03:15:36,879 ANOTHER QUICK NOTE ON KN 4305 03:15:36,879 --> 03:15:38,381 NOMENCLATURE AND WORDS WE ARE 4306 03:15:38,381 --> 03:15:39,382 USING IN OUR PRESENTATION TODAY, 4307 03:15:39,382 --> 03:15:42,051 WHEN WE ARE TALKING ABOUT 4308 03:15:42,051 --> 03:15:45,555 POST-TBI, ADRD, ALSO REFERRED TO 4309 03:15:45,555 --> 03:15:48,024 AS POST-TRAUMATIC 4310 03:15:48,024 --> 03:15:49,192 NEURODEGENERATION OR PTRD, WE 4311 03:15:49,192 --> 03:15:51,828 ARE NOT TALKING ABOUT ACUTE 4312 03:15:51,828 --> 03:15:53,396 SYMPTOMS THAT HAPPEN AFTER TBI; 4313 03:15:53,396 --> 03:15:55,565 WE ARE REFERRING TO A SUBSEQUENT 4314 03:15:55,565 --> 03:15:57,333 PATTERN OF DECLINE THAT IS 4315 03:15:57,333 --> 03:15:59,669 EXPERIENCED FOLLOWING RECOVERY 4316 03:15:59,669 --> 03:16:06,375 IN A SUBSET OF CHRONIC TBI 4317 03:16:06,375 --> 03:16:07,777 SURVIVORS. NEXT SLIDE. THIS 4318 03:16:07,777 --> 03:16:10,346 IMAGE IS FROM A PAPER WE WROTE 4319 03:16:10,346 --> 03:16:12,348 AFTER THE 2019ADRD SUMMIT. I 4320 03:16:12,348 --> 03:16:14,016 HAVE INCLUDED IT BECAUSE IT 4321 03:16:14,016 --> 03:16:18,955 REALLY EMPHASIZES THAT PTND IS 4322 03:16:18,955 --> 03:16:20,523 INDISPUTEDLY A MULTIPLE ETIOLOGY 4323 03:16:20,523 --> 03:16:23,793 DEMENTIA. TBI IS ONE OF MANY 4324 03:16:23,793 --> 03:16:25,194 THINGS IN A LIFETIME THAT CAN 4325 03:16:25,194 --> 03:16:28,865 INFLUENCE DEMENTIA RISK. TBI HAS 4326 03:16:28,865 --> 03:16:30,466 UNIQUE PATHOLOGICAL FOOT PRINTS 4327 03:16:30,466 --> 03:16:37,874 WE ARE JUST NOW BEGINNING TO 4328 03:16:37,874 --> 03:16:40,610 EXPLORE. JUST BRIEFLY GROWING 4329 03:16:40,610 --> 03:16:44,447 EVIDENCE SUGGESTS HEAD TRAUMA OF 4330 03:16:44,447 --> 03:16:47,316 DISTINCT ETIOLOGIES MAY HAVE 4331 03:16:47,316 --> 03:16:48,718 DISTINCT FOOTPRINT S SO CTE HAS 4332 03:16:48,718 --> 03:16:52,588 A WELL-DEFINED LESION THAT 4333 03:16:52,588 --> 03:16:55,158 APPEARS TO BE UNIQUE TO RHI. 4334 03:16:55,158 --> 03:16:56,893 THEN WE HAVE EVIDENCE THAT 4335 03:16:56,893 --> 03:16:58,294 SUGGESTS THAT BLAST EXPOSURE MAY 4336 03:16:58,294 --> 03:17:01,964 HAVE A UNIQUE PATTERN OF -- WE 4337 03:17:01,964 --> 03:17:05,768 CALL IT INTER FACE ASTRO GLIAL 4338 03:17:05,768 --> 03:17:07,870 SCARRING. NEXT INTIMATE PARTNER 4339 03:17:07,870 --> 03:17:10,439 VIOLENCE, WHICH IS A PATTERN 4340 03:17:10,439 --> 03:17:12,575 OFTENTIMES OF BRAIN INJURY THAT 4341 03:17:12,575 --> 03:17:15,578 CAN INVOLVE REPETITIVE HEAD 4342 03:17:15,578 --> 03:17:24,120 IMPACTS, AGNOSTIC OR HIGH POHIC 4343 03:17:24,120 --> 03:17:25,488 INJURY IN AN INDIVIDUAL. BASED 4344 03:17:25,488 --> 03:17:27,924 ON VERY FEW CASES STUDIED TO 4345 03:17:27,924 --> 03:17:31,427 DATE. BUT WE HAVE NOT FOUND MUCH 4346 03:17:31,427 --> 03:17:33,963 CTE IN IPV, SUGGESTING THIS IS 4347 03:17:33,963 --> 03:17:38,901 NOT A PRIMARY PATHOLOGY OF IPV. 4348 03:17:38,901 --> 03:17:41,437 FINALLY ISOLATED TRAUMATIC BRAIN 4349 03:17:41,437 --> 03:17:43,439 INJURY SEEMS TO RESULT IN WIDE 4350 03:17:43,439 --> 03:17:44,941 RANGE OF DISTINCT AND 4351 03:17:44,941 --> 03:17:48,477 OVERLAPPING PATHOLOGIES 4352 03:17:48,477 --> 03:17:51,981 INCLUDING TISSUE TEARS AND NEW 4353 03:17:51,981 --> 03:17:53,649 EVIDENT EVIDENCE IS SUGGESTING 4354 03:17:53,649 --> 03:17:57,920 IT MAY BE AMPLIFIED BY OR 4355 03:17:57,920 --> 03:18:02,925 PROXIMAL TO TRAUMATIC LESIONS. 4356 03:18:02,925 --> 03:18:07,230 NEXT. WE WANT TO ALSO 4357 03:18:07,230 --> 03:18:09,298 ACKNOWLEDGE THAT WE HAVE HAD 4358 03:18:09,298 --> 03:18:10,233 TREMENDOUS PROGRESS SINCE EVEN 4359 03:18:10,233 --> 03:18:13,569 JUST THE LAST SUMMIT IN 2022. 4360 03:18:13,569 --> 03:18:15,538 THE NIH HAS FUNDED SEVERAL 4361 03:18:15,538 --> 03:18:16,505 AWARDS TO ADVANCE 4362 03:18:16,505 --> 03:18:17,473 RECOMMENDATIONS WITH A 4363 03:18:17,473 --> 03:18:18,941 PARTICULAR EMPHASIS ON 4364 03:18:18,941 --> 03:18:21,811 MULTI MODAL INVESTIGATIONS INTO 4365 03:18:21,811 --> 03:18:23,646 TBI AS A MULTIPLE ETIOLOGY 4366 03:18:23,646 --> 03:18:26,515 DEMENTIA EMPHASIZING 4367 03:18:26,515 --> 03:18:27,250 MULTI DISCIPLINARY COLLABORATION 4368 03:18:27,250 --> 03:18:29,719 AND FACILITATING DATA SHARING. 4369 03:18:29,719 --> 03:18:30,119 NEXT. 4370 03:18:30,119 --> 03:18:31,153 >> TWO MINUTES. 4371 03:18:31,153 --> 03:18:33,789 >> WE HAVE CHANGED OUR TIME 4372 03:18:33,789 --> 03:18:39,195 ALLOCATION, JUST SO YOU KNOW. 4373 03:18:39,195 --> 03:18:41,130 NEXT. PRIORITY ONE IS -- I'M 4374 03:18:41,130 --> 03:18:42,832 GOING TO GO THROUGH EACH OF OUR 4375 03:18:42,832 --> 03:18:44,333 PRIORITIES. I'M GOING TO START 4376 03:18:44,333 --> 03:18:46,335 WITH PRIORITY ONE THEN HAVE SOME 4377 03:18:46,335 --> 03:18:47,570 SLIDES THAT JUST ILLUSTRATE SOME 4378 03:18:47,570 --> 03:18:49,705 OF THE SUB COMPONENTS OF 4379 03:18:49,705 --> 03:18:53,643 PRIORITY ONE. LET'S GO TO THE 4380 03:18:53,643 --> 03:18:57,580 NEXT SLIDE. SO PRIORITY ONE IS 4381 03:18:57,580 --> 03:18:58,948 REALLY ABOUT LONGITUDINAL 4382 03:18:58,948 --> 03:19:01,150 MULTI MODAL STUDIES, THE NEED TO 4383 03:19:01,150 --> 03:19:02,952 DEVELOP THIS INFRASTRUCTURE TO 4384 03:19:02,952 --> 03:19:06,489 STUDY THE LONG-TERM IMPLICATIONS 4385 03:19:06,489 --> 03:19:08,925 OF TBI AND INTERSECTIONS WITH 4386 03:19:08,925 --> 03:19:12,428 ADRDs SO FOUNDATIONAL TO THIS 4387 03:19:12,428 --> 03:19:15,131 EFFORT IS FURTHER VALIDATION AND 4388 03:19:15,131 --> 03:19:17,466 STANDARDIZATION OF METHODS TO 4389 03:19:17,466 --> 03:19:20,636 QUANTIFY TBI AND RHI. 4390 03:19:20,636 --> 03:19:21,938 SELF-REPORT IS OFTEN BEST OPTION 4391 03:19:21,938 --> 03:19:24,173 FOR LIFETIME EXPOSURE 4392 03:19:24,173 --> 03:19:26,208 CHARACTERIZATION. IDEALLY IT IS 4393 03:19:26,208 --> 03:19:28,077 SUPPLEMENTED BY MEDICAL RECORDS 4394 03:19:28,077 --> 03:19:32,281 WHICH CAN GIVE SNAPSHOTS OF 4395 03:19:32,281 --> 03:19:34,116 INJURIES THAT HAVE RECEIVED CARE 4396 03:19:34,116 --> 03:19:35,451 AND EACH HAS STRENGTHS AND 4397 03:19:35,451 --> 03:19:38,187 WEAKNESSES THERE ARE ONGOING 4398 03:19:38,187 --> 03:19:41,724 EFFORTS TO QUANTIFY RHI IN 4399 03:19:41,724 --> 03:19:43,693 CONTACT SPORTS AND MILITARY 4400 03:19:43,693 --> 03:19:47,063 SETTINGS. NEXT. IMPORTANTLY, 4401 03:19:47,063 --> 03:19:48,064 GROWING EVIDENCE SUGGESTS 4402 03:19:48,064 --> 03:19:49,932 READILY REPORTABLE INDICES SUCH 4403 03:19:49,932 --> 03:19:52,635 AS DURATION OF EXPOSURE TO 4404 03:19:52,635 --> 03:19:54,804 CONTACT SPORT S HAVE A DOSE 4405 03:19:54,804 --> 03:19:58,341 RELATIONSHIP WITH FOR EXAMPLE 4406 03:19:58,341 --> 03:20:03,346 CTU NEURAL PATHOLOGY, NEXT. 4407 03:20:03,346 --> 03:20:10,486 OKAY. NEXT. THERE GO. NEXT. SO A 4408 03:20:10,486 --> 03:20:14,056 DIAGNOSIS OF POST-TRAUMATIC 4409 03:20:14,056 --> 03:20:15,191 NEURO DEGENERATION DURING LIFE, 4410 03:20:15,191 --> 03:20:17,626 WHEN WE CAN STILL INTERVENE, IS 4411 03:20:17,626 --> 03:20:19,829 OF HIGH PRIORITY. THIS REQUIRES 4412 03:20:19,829 --> 03:20:21,864 LONGITUDINAL STUDY IN COHORTS 4413 03:20:21,864 --> 03:20:24,200 WILLING TO UNDERGO MULTI MODAL, 4414 03:20:24,200 --> 03:20:27,069 CLINICAL AND BIO MARKER 4415 03:20:27,069 --> 03:20:28,104 EVALUATIONS TO DISTINGUISH THE 4416 03:20:28,104 --> 03:20:38,748 STABLE POST TBI SYMPTOMS AND 4417 03:20:38,748 --> 03:20:41,984 CRITERIA UNDERLYING DISEASE 4418 03:20:41,984 --> 03:20:43,919 PROCESSES. NEXT AGAIN TRAUMATIC 4419 03:20:43,919 --> 03:20:47,957 BRAIN INJURY IS AN ADRD RISK 4420 03:20:47,957 --> 03:20:50,226 FACTOR WITH A TIME ZERO WHICH 4421 03:20:50,226 --> 03:20:52,695 MEANS TBI SURVIVORS ARE A RISK 4422 03:20:52,695 --> 03:20:53,929 POPULATION THAT MAY SUPPORT 4423 03:20:53,929 --> 03:20:55,498 IDENTIFICATION OF THE EARLIEST 4424 03:20:55,498 --> 03:20:57,533 BIOLOGICAL SIGNS OF DEMENTIA 4425 03:20:57,533 --> 03:21:00,603 RISK. IT IS ESSENTIAL TO 4426 03:21:00,603 --> 03:21:02,171 RECOGNIZE THAT MOST INDIVIDUALS 4427 03:21:02,171 --> 03:21:05,841 WITH RHI EXPOSURE AND WITH TBI 4428 03:21:05,841 --> 03:21:10,279 WILL NOT DEVELOP ADRDs. WE NEED 4429 03:21:10,279 --> 03:21:12,214 ASYSTEMATIC INDIVIDUALS WITH 4430 03:21:12,214 --> 03:21:13,716 THESE EXPOSURES WITH RHI AND T 4431 03:21:13,716 --> 03:21:16,519 BIV TO BE INCLUDED IN OUR 4432 03:21:16,519 --> 03:21:17,887 LONGITUDINAL STUDIES SO WE CAN 4433 03:21:17,887 --> 03:21:22,525 ALSO IDENTIFY PROTECTIVE 4434 03:21:22,525 --> 03:21:25,361 FACTORS. NEXT. WE NEED 4435 03:21:25,361 --> 03:21:32,635 BIO MARKERS OF PTMD. TPI 4436 03:21:32,635 --> 03:21:33,636 BIOMARKER DISCOVERIES HAVE 4437 03:21:33,636 --> 03:21:35,704 FOCUSED ALMOST EXCLUSIVELY ON 4438 03:21:35,704 --> 03:21:38,107 ACUTE CARE TRIAGING. OUR 4439 03:21:38,107 --> 03:21:39,341 COLLEAGUES MEANWHILE WHO ARE 4440 03:21:39,341 --> 03:21:43,045 STUDYING AD AND ADRDs HAVE MADE 4441 03:21:43,045 --> 03:21:45,347 REALLY IMPORTANT DISCOVERIES IN 4442 03:21:45,347 --> 03:21:48,017 IMAGING AND FLUID BIOMARKERS OF 4443 03:21:48,017 --> 03:21:49,752 DEMENTIA SO IN SEARCHING FOR 4444 03:21:49,752 --> 03:21:54,290 BIO MARKERS OF POST TBI ADRD WE 4445 03:21:54,290 --> 03:21:56,659 HAVE FOCUSED SO FAR ON THOSE WE 4446 03:21:56,659 --> 03:22:00,596 KNOW TO BE PERTURBED BY ACUTE 4447 03:22:00,596 --> 03:22:02,798 TBI AND KNOWN RELEVANT TO ADRDs. 4448 03:22:02,798 --> 03:22:05,734 WE MAY BE MISSING IMPORTANT PTND 4449 03:22:05,734 --> 03:22:08,003 SPECIFIC BIOMARKERS AND NEED TO 4450 03:22:08,003 --> 03:22:10,506 BROAD INTO IDENTIFY OTHER 4451 03:22:10,506 --> 03:22:12,842 NON-INVASIVE BIOMARKERS THAT CAN 4452 03:22:12,842 --> 03:22:15,177 PREDICT AND MONITOR DISSEEDS 4453 03:22:15,177 --> 03:22:16,679 PROGRESSION OVER TIME AND 4454 03:22:16,679 --> 03:22:20,649 IDENTIFY THE PATHOLOGIES THAT 4455 03:22:20,649 --> 03:22:25,187 UNDERLIE CLINICAL DECLINE. NEXT. 4456 03:22:25,187 --> 03:22:29,058 A GROWING UNDERSTANDING OF 4457 03:22:29,058 --> 03:22:30,860 INJURY BIOMECHANIC NICK S IS 4458 03:22:30,860 --> 03:22:32,027 HELPING US UNDERSTAND HOW 4459 03:22:32,027 --> 03:22:34,263 DIFFERENT TYPES IN HEAD TRAUMA 4460 03:22:34,263 --> 03:22:36,132 CAN RESULT IN PATHOLOGICAL 4461 03:22:36,132 --> 03:22:37,666 PROCESSES. WHAT WE DON'T KNOW IS 4462 03:22:37,666 --> 03:22:40,870 HOW TBI SPECIFIC PATHOLOGIES CAN 4463 03:22:40,870 --> 03:22:44,240 INTER ACT WITH AD AND OTHER ADRD 4464 03:22:44,240 --> 03:22:47,176 PATHOLOGIES OR WITH CLINICAL 4465 03:22:47,176 --> 03:22:49,311 SYMPTOMS, OR SPECIFICALLY HOW 4466 03:22:49,311 --> 03:22:51,747 ESTABLISHED AD BIO MARKERS ARE 4467 03:22:51,747 --> 03:22:54,250 INFLUENCED BY A TBI. WE NEED TO 4468 03:22:54,250 --> 03:22:55,484 BETTER UNDERSTAND WHETHER HEAD 4469 03:22:55,484 --> 03:22:57,753 TRAUMA INFLUENCES THE RESPONSE 4470 03:22:57,753 --> 03:23:00,189 TO DISEASE MODIFYING TREATMENTS 4471 03:23:00,189 --> 03:23:03,993 WITH EXISTING APPROVED 4472 03:23:03,993 --> 03:23:05,361 THERAPIES. NEXT. FINALLY OUR 4473 03:23:05,361 --> 03:23:08,464 SUBCOMMITTEE HAS EMPHASIZED THE 4474 03:23:08,464 --> 03:23:10,399 IMPORTANCE OF COLLECTING COMMON 4475 03:23:10,399 --> 03:23:14,003 DATA ELEMENTS. CAN WE GO TO THE 4476 03:23:14,003 --> 03:23:16,872 NEXT SLIDE. THERE WE GO. COMMON 4477 03:23:16,872 --> 03:23:20,109 DATA ELEMENTS, SO THIS IS A 4478 03:23:20,109 --> 03:23:21,410 RECOMMENDATION TO INCLUDE 4479 03:23:21,410 --> 03:23:23,779 SIMILAR MEASURES IN STUDIES EVEN 4480 03:23:23,779 --> 03:23:26,782 ONGOING STUDIES OF TRAUMATIC 4481 03:23:26,782 --> 03:23:28,717 BRAIN INJURY, WHICH MAY IN SOME 4482 03:23:28,717 --> 03:23:31,086 CASES MEAN COLLECTING ADDITIONAL 4483 03:23:31,086 --> 03:23:33,756 DATA TO OPTIMIZE OVERLAP BETWEEN 4484 03:23:33,756 --> 03:23:38,394 TBI STUDIES AND DEMENTIA STUDIES 4485 03:23:38,394 --> 03:23:41,730 SPECIFICALLY, NEXT, PROVIDE THE 4486 03:23:41,730 --> 03:23:43,732 FOUNDATIONS THAT WE NEED FOR 4487 03:23:43,732 --> 03:23:46,235 CROSS-STUDY COMPARISONS AND DATA 4488 03:23:46,235 --> 03:23:48,337 SHARING IN PUBLIC REPOSITORIES. 4489 03:23:48,337 --> 03:23:50,573 I'M GOING TO TURN IT OVER NOW TO 4490 03:23:50,573 --> 03:23:53,275 MY COLLEAGUE, WHO IS GOING TO 4491 03:23:53,275 --> 03:23:56,645 PRESENT RECOMMENDATION TWO, 4492 03:23:56,645 --> 03:24:06,855 THANK YOU. 4493 03:24:19,268 --> 03:24:24,540 CAN WE UNMUTE, DR. GRAHAM? 4494 03:24:24,540 --> 03:24:27,743 >> WONDERFUL, THAT COMING 4495 03:24:27,743 --> 03:24:30,613 THROUGH? THANKS, I WANT TO THANK 4496 03:24:30,613 --> 03:24:36,085 THE ORGANIZERS AT NIH FOR 4497 03:24:36,085 --> 03:24:38,220 PUTTING TOGETHER THIS AND 4498 03:24:38,220 --> 03:24:39,488 BRINGING TOGETHER THESE 4499 03:24:39,488 --> 03:24:40,990 RECOMMENDATIONS, I THINK ARE 4500 03:24:40,990 --> 03:24:42,825 REALLY IMPORTANT. AND, YOU KNOW, 4501 03:24:42,825 --> 03:24:45,494 ARE GOING TO BE VERY IMPACTFUL A 4502 03:24:45,494 --> 03:24:46,929 MOMENT OF OPPORTUNITY FOR OUR 4503 03:24:46,929 --> 03:24:50,266 FIELD. SO, YOU KNOW, AS WE SET 4504 03:24:50,266 --> 03:24:53,836 OUT WE HAVE MADE A GREAT DEAL OF 4505 03:24:53,836 --> 03:24:55,871 PROGRESS SO FAR IN TERMS FROM MY 4506 03:24:55,871 --> 03:24:58,040 PERSPECTIVE, BIOMARKERS OF 4507 03:24:58,040 --> 03:25:00,075 INJURY, GAVE ME A MECHANISTIC 4508 03:25:00,075 --> 03:25:01,343 UNDERSTANDING BUT LOTS FOR US TO 4509 03:25:01,343 --> 03:25:03,078 DO. IF WE COULD ADVANCE TO THE 4510 03:25:03,078 --> 03:25:04,580 NEXT SLIDE, PLEASE . 4511 03:25:04,580 --> 03:25:05,347 THE RECOMMENDATION I WANTED TO 4512 03:25:05,347 --> 03:25:08,183 SHARE WITH YOU, WHICH WE HAVE 4513 03:25:08,183 --> 03:25:11,787 PUT TOGETHER, IS ABOUT LINKING 4514 03:25:11,787 --> 03:25:16,058 UP THE ALZHEIMER'S AND TBI 4515 03:25:16,058 --> 03:25:17,526 FIELDS TO GAIN SOME KIND OF 4516 03:25:17,526 --> 03:25:19,395 SCALE AND LEVERAGE EXISTING 4517 03:25:19,395 --> 03:25:21,630 INVESTMENT IN SKILLS, EXPERIENCE 4518 03:25:21,630 --> 03:25:22,464 PRESENT IN EACH OF THOSE IN 4519 03:25:22,464 --> 03:25:26,068 ORDER TO HAVE THE SCALE TO KIND 4520 03:25:26,068 --> 03:25:27,670 OF MAKE THE BREAKTHROUGHS 4521 03:25:27,670 --> 03:25:31,173 NECESSARY IF WE ARE GOING TO 4522 03:25:31,173 --> 03:25:36,211 TRANSLATE INTO PATIENT CARE. FOR 4523 03:25:36,211 --> 03:25:40,649 EXAMPLE IT IS CLEAR TBI IS A 4524 03:25:40,649 --> 03:25:43,986 VERY HETEROGENOUS DISEASE AND 4525 03:25:43,986 --> 03:25:45,954 UNDERLYING BASIS, FOR INSTANCE, 4526 03:25:45,954 --> 03:25:49,491 NEED LARGE SAMPLE SIZES. THIS IS 4527 03:25:49,491 --> 03:25:51,960 WHAT OUR RECOMMENDATION TWO 4528 03:25:51,960 --> 03:25:53,796 FOCUSES ON. I CAN GIVE YOU SOME 4529 03:25:53,796 --> 03:25:55,664 KIND OF DETAIL OF WHAT WE ARE 4530 03:25:55,664 --> 03:25:57,866 GOING TO DO. THE FIRST CHUNK, IF 4531 03:25:57,866 --> 03:26:02,971 WE CAN ADVANCE TO THE NEXT 4532 03:26:02,971 --> 03:26:03,672 SLIDE, PLEASE, IS ABOUT 4533 03:26:03,672 --> 03:26:05,274 CONVENING A WORKING GROUP OF 4534 03:26:05,274 --> 03:26:07,509 STAKEHOLDERS FROM TBI AND ADRD 4535 03:26:07,509 --> 03:26:11,547 COMMUNITIES TO EVALUATE EXTENT 4536 03:26:11,547 --> 03:26:14,850 WHAT WE KNOW CAN MR. APPLIED TO 4537 03:26:14,850 --> 03:26:19,688 STUDY OF TBI AND VICE VERSA AND 4538 03:26:19,688 --> 03:26:21,056 DEVELOP A FORUM KNOWLEDGE 4539 03:26:21,056 --> 03:26:22,424 EXCHANGE WHICH WOULD INCLUDE 4540 03:26:22,424 --> 03:26:24,093 BASIC SCIENCE, TRANSLATIONAL AND 4541 03:26:24,093 --> 03:26:26,528 CLINICAL RESEARCH, WHICH WOULD 4542 03:26:26,528 --> 03:26:28,430 HOPEFULLY GIVE BIDIRECTIONAL 4543 03:26:28,430 --> 03:26:29,331 COMMUNICATION. I THINK THIS 4544 03:26:29,331 --> 03:26:30,733 WOULD HELP US TO HIGHLIGHT 4545 03:26:30,733 --> 03:26:34,436 CLINICAL DISCOVERIES THAT REVEAL 4546 03:26:34,436 --> 03:26:36,505 GAPS WHERE GAINIES CAN BE MADE 4547 03:26:36,505 --> 03:26:38,841 AND HIGHLIGHT BASIC SIZE 4548 03:26:38,841 --> 03:26:39,641 DISCOVERIES THAT MIGHT INFORM 4549 03:26:39,641 --> 03:26:41,877 DEVELOPMENT OF CLINICALLY 4550 03:26:41,877 --> 03:26:44,680 ACCESSIBLE BIOMARKERS AND 4551 03:26:44,680 --> 03:26:49,051 INTERPRETATION OF FACTORS 4552 03:26:49,051 --> 03:26:52,821 RELEVANT TO PATHOLOGY. THIS IS 4553 03:26:52,821 --> 03:26:56,759 DONE YET WE DON'T HAVE SOMETHING 4554 03:26:56,759 --> 03:26:58,494 THAT BRINGS TOGETHER THESE 4555 03:26:58,494 --> 03:27:02,664 FIELDS. CERTAINLY WITHIN TBI WE 4556 03:27:02,664 --> 03:27:03,932 HAVE A STRONG INTERNATIONAL 4557 03:27:03,932 --> 03:27:05,467 RESEARCH COMMUNITY THROUGH INBIR 4558 03:27:05,467 --> 03:27:07,803 BUT I THINK THERE IS POTENTIALLY 4559 03:27:07,803 --> 03:27:09,972 MORE THAT CAN BE DONEN. SOME 4560 03:27:09,972 --> 03:27:12,641 WAYS THIS IS LOW HANGING FRUIT 4561 03:27:12,641 --> 03:27:13,976 ABOUT WORKING TOGETHER. IF WE 4562 03:27:13,976 --> 03:27:15,411 COULD HAVE THE NEXT SLIDE, THE 4563 03:27:15,411 --> 03:27:17,012 SECOND SUBPART OF THIS 4564 03:27:17,012 --> 03:27:19,448 RECOMMENDATION IS AROUND, YOU 4565 03:27:19,448 --> 03:27:21,417 KNOW, HARMIZATION. WHAT WOULD WE 4566 03:27:21,417 --> 03:27:23,786 NEED TO DO TO ACHIEVE THESE KIND 4567 03:27:23,786 --> 03:27:27,723 OF GAINS. YOU KNOW, WE STRONGLY 4568 03:27:27,723 --> 03:27:30,159 PROMOTE HARMONIZATION OF 4569 03:27:30,159 --> 03:27:31,627 EXISTING DATA THAT'S ALREADY 4570 03:27:31,627 --> 03:27:33,529 BEEN DONE INCLUDING DATA IN 4571 03:27:33,529 --> 03:27:36,665 FEDERAL REPOSITORIES FOR 4572 03:27:36,665 --> 03:27:38,767 RIGOROUS AND REPRODUCIBLE 4573 03:27:38,767 --> 03:27:40,936 RESEARCH. THAT MAY MEAN DATA 4574 03:27:40,936 --> 03:27:42,037 STRUCTURE TO SUPPORT HARMIZATION 4575 03:27:42,037 --> 03:27:44,440 AND ESTABLISHING SPECIFIC CODE 4576 03:27:44,440 --> 03:27:46,208 BOOKS, FUNDING USABILITY STUDIES 4577 03:27:46,208 --> 03:27:48,811 TO SIMPLIFY AND SHARING 4578 03:27:48,811 --> 03:27:51,680 REQUIRING PROSPECTIVE DATA 4579 03:27:51,680 --> 03:27:52,881 COLLECTION USING STANDARDIZED 4580 03:27:52,881 --> 03:27:55,083 ELEMENTS AND MINIMUM DATA 4581 03:27:55,083 --> 03:27:59,254 ELEMENTS, IMPORTANT FROM OUR 4582 03:27:59,254 --> 03:28:02,024 PERSPECTIVE. LAST IS ABOUT 4583 03:28:02,024 --> 03:28:02,791 FOSTERING COLLABORATION. 4584 03:28:02,791 --> 03:28:03,759 SPECIFICALLY TO BUILD TOWARDS 4585 03:28:03,759 --> 03:28:05,561 THE GOAL OF GAINING REGULATORY 4586 03:28:05,561 --> 03:28:09,064 SUPPORT FOR DIAGNOSTICS AND 4587 03:28:09,064 --> 03:28:11,900 ASSESSMENT METHODS, LOOKING AT 4588 03:28:11,900 --> 03:28:14,903 SAFETY AND EFFICACY IN CLINICAL 4589 03:28:14,903 --> 03:28:17,372 TRIALS. FROM OUR PERSPECTIVE WE 4590 03:28:17,372 --> 03:28:18,507 WANT BETTER COLLABORATION BUT WE 4591 03:28:18,507 --> 03:28:21,143 WANT TO DO SO WITH A VERY CLEAR 4592 03:28:21,143 --> 03:28:24,646 PURPOSE THAT WE ARE AIMING 4593 03:28:24,646 --> 03:28:26,281 ULTIMATELY TO OVER COME BARRIERS 4594 03:28:26,281 --> 03:28:28,884 THE FIELD HAS HAD TOWARD 4595 03:28:28,884 --> 03:28:30,085 DEVELOPING NEW THERAPEUTICSES. 4596 03:28:30,085 --> 03:28:38,961 WE ARE HOPING THAT, YOU KNOW, 4597 03:28:38,961 --> 03:28:40,896 KIND OF PRECISION DIAGNOSTIC 4598 03:28:40,896 --> 03:28:42,231 APPROACH TO PATIENTS THAT IS 4599 03:28:42,231 --> 03:28:44,633 GOING TO YIELD SUCCESS IN 4600 03:28:44,633 --> 03:28:48,203 TRIALS. SO THAT WRAPS UP 4601 03:28:48,203 --> 03:28:51,206 RECOMMENDATION NUMBER TWO TO OUR 4602 03:28:51,206 --> 03:28:57,713 NEXT PRESENTER, THANK YOU. 4603 03:28:57,713 --> 03:28:59,081 >> YES, GOOD MORNING. I TOO 4604 03:28:59,081 --> 03:29:02,551 WOULD LIKE TO ECHO MY THANKS TO 4605 03:29:02,551 --> 03:29:03,619 NINDS AND NIH IN GENERAL, 4606 03:29:03,619 --> 03:29:04,920 CERTAINLY ALL THE SUBCOMMITTEE 4607 03:29:04,920 --> 03:29:06,054 MEMBERS I HAVE HAD THE PRIVILEGE 4608 03:29:06,054 --> 03:29:09,091 OF WORKING WITH. I HAVE THE 4609 03:29:09,091 --> 03:29:11,326 PRIVILEGE OF INTRODUCING 4610 03:29:11,326 --> 03:29:12,961 RECOMMENDATION 3. IF I COULD 4611 03:29:12,961 --> 03:29:14,830 HAVE THE NEXT SLIDE. I HAVE 4612 03:29:14,830 --> 03:29:20,202 NOTHING TO DISCLOSE. NEXT SLIDE. 4613 03:29:20,202 --> 03:29:23,705 NEXT SLIDE, THANK YOU. SO 4614 03:29:23,705 --> 03:29:28,911 RECOMMENDATION 3 REALLY IS TO 4615 03:29:28,911 --> 03:29:31,346 CROSS-LINK MODELS AND CONDUCT 4616 03:29:31,346 --> 03:29:34,616 BASIC AND TRANSLATIONAL RESEARCH 4617 03:29:34,616 --> 03:29:37,553 WITH HUMAN SPECIMENS AND 4618 03:29:37,553 --> 03:29:40,088 EXPERIMENTAL MODELS FOR THE POST 4619 03:29:40,088 --> 03:29:42,558 TISSUE RESPONSE, IE IDENTIFY 4620 03:29:42,558 --> 03:29:46,228 MECHANISTIC PATHWAYS AND 4621 03:29:46,228 --> 03:29:48,664 ELUCIDATE PATHWAYS AGAINST 4622 03:29:48,664 --> 03:29:54,169 PROGRESSION OF POST TBI, ADRDs. 4623 03:29:54,169 --> 03:29:55,537 UNDERNEATH THIS RECOMMENDATION 4624 03:29:55,537 --> 03:29:57,439 WERE SORT OF THE FIVE SUB 4625 03:29:57,439 --> 03:29:59,241 RECOMMENDATIONS, IF YOU WILL. I 4626 03:29:59,241 --> 03:30:02,411 WILL TOUCH ON THAT BRIEFLY AS WE 4627 03:30:02,411 --> 03:30:04,646 GO THROUGH THIS TALK. NEXT 4628 03:30:04,646 --> 03:30:07,282 SLIDE, PLEASE. I JUST WANTED TO 4629 03:30:07,282 --> 03:30:09,451 REMIND EVERYONE THAT POST TBI 4630 03:30:09,451 --> 03:30:14,122 AND ITS PROGRESSION TO ADRD IS A 4631 03:30:14,122 --> 03:30:16,425 CONTINUUM. THE LEFT PANEL IS 4632 03:30:16,425 --> 03:30:17,993 SUMMARY, ALBEIT A LITTLE 4633 03:30:17,993 --> 03:30:22,030 SIMPLIFIED, OF HOW A TBI MIGHT 4634 03:30:22,030 --> 03:30:26,001 THEN SLOWLY SPIRAL DOWN TO 4635 03:30:26,001 --> 03:30:27,603 COGNITIVE IMPAIRMENT TYPE 4636 03:30:27,603 --> 03:30:29,771 PATHOLOGY AND KEY WORDS ARE 4637 03:30:29,771 --> 03:30:30,772 AD-LIKE PATHOLOGY BUT IT IS 4638 03:30:30,772 --> 03:30:33,275 IMPORTANT TO NOTE THIS LITTLE 4639 03:30:33,275 --> 03:30:37,679 SCHEMATIC INCLUDES FEATURES 4640 03:30:37,679 --> 03:30:41,984 PREVALENT IN AD, INCLUDING BETA 4641 03:30:41,984 --> 03:30:44,853 AM LLOYD, VASCULAR DIGITAL ET 4642 03:30:44,853 --> 03:30:48,357 CETERA. EMERGING EVIDENCE IN THE 4643 03:30:48,357 --> 03:30:50,292 FIELD INCLUDING THIS MANUSCRIPT 4644 03:30:50,292 --> 03:30:52,628 FROM GRAHAM AND COLLEAGUES IN 4645 03:30:52,628 --> 03:30:54,363 2023, WHERE IN THE TOP PANEL YOU 4646 03:30:54,363 --> 03:30:57,232 CAN SEE BRAIN REGIONS THAT ARE 4647 03:30:57,232 --> 03:30:59,468 IMPACTED, BOTH GRAY MATTER, 4648 03:30:59,468 --> 03:31:02,337 WHITE MATTER, CSF, IMPACTS A 4649 03:31:02,337 --> 03:31:04,706 LARGE SWATH OF VARIOUS BRAIN 4650 03:31:04,706 --> 03:31:06,508 REGIONS. IN THE MIDDLE PANEL YOU 4651 03:31:06,508 --> 03:31:10,145 CAN SEE TBI SIMILARLY HAS OTHER 4652 03:31:10,145 --> 03:31:13,715 REGIONS ALSO CO -EMERGED AS WITH 4653 03:31:13,715 --> 03:31:17,185 THE ADRD PATIENT SUGGESTING 4654 03:31:17,185 --> 03:31:19,354 THERE ARE POTENTIAL COMMON 4655 03:31:19,354 --> 03:31:21,123 MECHANISMS. HOWEVER AS THESE 4656 03:31:21,123 --> 03:31:22,090 PROCESSES ARE DIFFERENT BETWEEN 4657 03:31:22,090 --> 03:31:25,827 THE TBI AND ADRD AND THEY ARE 4658 03:31:25,827 --> 03:31:26,928 DISTINCT BUT IT IS ALSO 4659 03:31:26,928 --> 03:31:28,397 IMPORTANT TECHNOLOGY THAT 4660 03:31:28,397 --> 03:31:33,669 CONSIDERABLE OVERLAP EXISTS. 4661 03:31:33,669 --> 03:31:38,774 NEXT SLIDE, PLEASE. AS NOTED 4662 03:31:38,774 --> 03:31:41,410 EARLIER, AS NOTED EARLIER BY DR. 4663 03:31:41,410 --> 03:31:46,948 OH C OH CONNOR, SOME HAVE BEEN 4664 03:31:46,948 --> 03:31:49,184 FUNDED. THIS IS A NEW HOPE TBI 4665 03:31:49,184 --> 03:31:50,419 STUDY, WHERE THEY ARE EXPANDING 4666 03:31:50,419 --> 03:31:53,622 A LARGE NETWORK OF WELL 4667 03:31:53,622 --> 03:31:55,090 CHARACTERIZED BRAIN DONORS 4668 03:31:55,090 --> 03:31:57,292 LOOKING AT NEURAL IMAGING, 4669 03:31:57,292 --> 03:32:00,662 BEHAVIORAL MEASURES AND 4670 03:32:00,662 --> 03:32:01,563 IDENTIFYING SIGNATURES FROM 4671 03:32:01,563 --> 03:32:05,867 THESE DATA TYPES, INCLUDING 4672 03:32:05,867 --> 03:32:09,037 QUANTITATIVE NEURO PATHOLOGY TO 4673 03:32:09,037 --> 03:32:10,272 BETTER INFORM FUTURE RESEARCH 4674 03:32:10,272 --> 03:32:11,473 AND ONGOING TREATMENTS FOR 4675 03:32:11,473 --> 03:32:13,175 PATIENTS INCLUDING VASCULAR 4676 03:32:13,175 --> 03:32:15,877 PATHOLOGY. THE END GOAL, OF 4677 03:32:15,877 --> 03:32:18,246 COURSE, IS TO PROVIDE A 4678 03:32:18,246 --> 03:32:19,114 LONG-TERM REPOSITORY THAT 4679 03:32:19,114 --> 03:32:22,184 RESEARCHERS AND CLINICIANS CAN 4680 03:32:22,184 --> 03:32:23,819 NOW START TO VACCINATE FUTURE 4681 03:32:23,819 --> 03:32:25,353 RESEARCH DIRECTIONS. IF I CAN 4682 03:32:25,353 --> 03:32:31,993 HAVE THE NEXT SLIDE, PLEASE. SO 4683 03:32:31,993 --> 03:32:33,829 THE NEXT RECOMMENDATION, ONE OF 4684 03:32:33,829 --> 03:32:35,897 THE SUB RECOMMENDATIONS WAS 4685 03:32:35,897 --> 03:32:39,534 REALLY TO START TO STRENGTHEN 4686 03:32:39,534 --> 03:32:42,237 THIS LINKAGE OF HUMAN SPECIMENS 4687 03:32:42,237 --> 03:32:46,174 TO CHARACTERIZE POST TBIADRD. IN 4688 03:32:46,174 --> 03:32:48,310 THIS SUMMARY FROM SMITH AND ALL, 4689 03:32:48,310 --> 03:32:49,711 THIS REVIEW PAPER, WHERE YOU 4690 03:32:49,711 --> 03:32:52,547 HAVE SINGLE TO MODERATE SEVERE 4691 03:32:52,547 --> 03:33:02,924 TBI OR REPETITIVE T BIV,TBI, WH 4692 03:33:02,924 --> 03:33:07,229 STRENGTHENED INCLUDING TA, 4693 03:33:07,229 --> 03:33:09,531 INFLAMMATION, A BETA, LONG-TERM 4694 03:33:09,531 --> 03:33:13,201 DEVELOPMENT OF ATROPHY. IN LATE 4695 03:33:13,201 --> 03:33:15,270 EFFECTS OF TBI STUDIES, WHERE 4696 03:33:15,270 --> 03:33:19,875 THEY ARE DOING HIGH RESOLUTION 7 4697 03:33:19,875 --> 03:33:22,344 TESLA ANATOMICAL IMAGING, 4698 03:33:22,344 --> 03:33:24,146 COMBINING THAT WITH VARIOUS 4699 03:33:24,146 --> 03:33:26,615 NEURO PA LOGICAL STAINS AND 4700 03:33:26,615 --> 03:33:30,452 SHOWN HERE IN C, YOU CAN SEE A 4701 03:33:30,452 --> 03:33:31,620 VASCULAR STRUCTURE SURROUNDED BY 4702 03:33:31,620 --> 03:33:34,089 A BETA STAINING, SUGGESTING A 4703 03:33:34,089 --> 03:33:35,557 VASCULAR ETIOLOGY, SO 4704 03:33:35,557 --> 03:33:37,092 CHARACTERIZING THESE IN MORE 4705 03:33:37,092 --> 03:33:38,827 DETAIL IS CERTAINLY A HIGH 4706 03:33:38,827 --> 03:33:41,863 RECOMMENDATION OF THIS 4707 03:33:41,863 --> 03:33:42,430 SUBCOMMITTEE. NEXT SLIDE, 4708 03:33:42,430 --> 03:33:46,268 PLEASE. OF COURSE THE EVALUATION 4709 03:33:46,268 --> 03:33:48,970 OF -- NEXT SLIDE. THE EVALUATION 4710 03:33:48,970 --> 03:33:52,174 OF CLINICALLY RELEVANT ANIMAL 4711 03:33:52,174 --> 03:33:54,876 MODELS THAT MAY ACCELERATE ADRD 4712 03:33:54,876 --> 03:33:57,078 IS VERY IMPORTANT. IN THE LEFT 4713 03:33:57,078 --> 03:33:59,548 PANEL HERE YOU CAN SEE SORT OF 4714 03:33:59,548 --> 03:34:03,051 CLASSICAL INDUCTION MODELS OF 4715 03:34:03,051 --> 03:34:04,786 TRAUMATIC BRAIN INJURY AND 4716 03:34:04,786 --> 03:34:07,122 INCLUDING HERE IN THE MIDDLE 4717 03:34:07,122 --> 03:34:08,256 REPEATED HEAD INJURY OR CLOSE 4718 03:34:08,256 --> 03:34:11,026 HEAD INJURY. MANY OF THESE ARE 4719 03:34:11,026 --> 03:34:13,428 USED TO STUDY THE ACUTE TYPE OF 4720 03:34:13,428 --> 03:34:15,096 TBI BUT NOW WE ARE STARTING TO 4721 03:34:15,096 --> 03:34:19,668 BE USED TO STUDY LONG-TERM 4722 03:34:19,668 --> 03:34:27,375 EVENTS IN TBI. THE USE OF 4723 03:34:27,375 --> 03:34:30,545 ENCEPHALOPHIC MODELS, STUDIES 4724 03:34:30,545 --> 03:34:32,581 OVER 16 WEEKS IN A FERRET MODEL, 4725 03:34:32,581 --> 03:34:35,016 ONE CAN SEE INCREASING 4726 03:34:35,016 --> 03:34:36,184 FRACTIONAL SIGNATURES STARTING 4727 03:34:36,184 --> 03:34:39,287 TO EMERGE, PARTICULARLY AT THE 4728 03:34:39,287 --> 03:34:41,489 GRAY MATTER WHITE MATTER 4729 03:34:41,489 --> 03:34:42,390 BOUNDARIES IN THESE. SO 4730 03:34:42,390 --> 03:34:45,627 DEVELOPMENT OF THESE MODELS AND 4731 03:34:45,627 --> 03:34:46,928 FOLLOWING THEM OVER LONG-TERM 4732 03:34:46,928 --> 03:34:50,432 LIFE SPAN STUDIES IS VERY 4733 03:34:50,432 --> 03:34:55,170 IMPORT 4734 03:34:55,170 --> 03:34:56,137 IMPORTANT. A FINAL 4735 03:34:56,137 --> 03:34:57,138 RECOMMENDATION IS IDENTIFY MORE 4736 03:34:57,138 --> 03:35:00,642 CLEARLY FACTORS THAT CAN CONFER 4737 03:35:00,642 --> 03:35:02,377 RESILIENCE SUSCEPTIBILITY AFTER 4738 03:35:02,377 --> 03:35:04,846 TBI. MOST IMPORTANTLY, USE THOSE 4739 03:35:04,846 --> 03:35:06,381 FACTORS TO GUIDE PATIENT CARE. 4740 03:35:06,381 --> 03:35:08,483 SO IN THE VIN DIAGRAM ON THE 4741 03:35:08,483 --> 03:35:11,152 LEFT YOU CAN SEE PRE-INJURY, 4742 03:35:11,152 --> 03:35:13,421 FACTORS INCLUDING GENETIC 4743 03:35:13,421 --> 03:35:14,923 SUSCEPTIBILITY, INJURY RELATED 4744 03:35:14,923 --> 03:35:17,959 FACTORS SUCH AS SEVERITY AND 4745 03:35:17,959 --> 03:35:18,894 LOCATION, POST INJURY AND MOST 4746 03:35:18,894 --> 03:35:20,629 IMPORTANTLY POST INJURY FACTORS 4747 03:35:20,629 --> 03:35:24,199 SUCH AS CO. MORBID DEFICITS AND 4748 03:35:24,199 --> 03:35:26,401 REHABILITATIONS ALL CAN GUIDE 4749 03:35:26,401 --> 03:35:28,536 OUR CARE AND IDENTIFY BETTER 4750 03:35:28,536 --> 03:35:33,041 WAYS TO TREAT PATIENTS. IN THE 4751 03:35:33,041 --> 03:35:35,110 SCHEMATIC FROM 2022 THEY 4752 03:35:35,110 --> 03:35:36,077 ACKNOWLEDGE WE HAVE MADE GREAT 4753 03:35:36,077 --> 03:35:38,713 PROGRESS IN BIOMARKERS AND MRI 4754 03:35:38,713 --> 03:35:40,749 FOR TRIAGING AND UNDERSTANDING 4755 03:35:40,749 --> 03:35:42,951 PROGRESSION AND MANAGEMENT OF 4756 03:35:42,951 --> 03:35:45,287 TBI. AS THEY ALSO POINT OUT 4757 03:35:45,287 --> 03:35:47,856 THERE ARE SIGNIFICANT GAPS, 4758 03:35:47,856 --> 03:35:49,024 PARTICULARLY IN HOW TO TREAT 4759 03:35:49,024 --> 03:35:51,693 OLDER POPULATIONS OF WHICH FORM 4760 03:35:51,693 --> 03:35:55,397 A CONSIDERABLE NUMBER OF TBI 4761 03:35:55,397 --> 03:35:56,564 PATIENTS. SO THESE 4762 03:35:56,564 --> 03:35:59,134 RECOMMENDATIONS AND SUB 4763 03:35:59,134 --> 03:36:00,201 RECOMMENDATIONS REALLY ARE TO 4764 03:36:00,201 --> 03:36:02,237 GUIDE ENHANCE BASIC AND 4765 03:36:02,237 --> 03:36:03,672 TRANSLATIONAL RESEARCH TO 4766 03:36:03,672 --> 03:36:05,941 ELUCIDATE MECHANISMS AND 4767 03:36:05,941 --> 03:36:07,909 TREATMENT TARGETS FOR POST TBI, 4768 03:36:07,909 --> 03:36:09,444 ADRD. WITH THAT I WILL HAND IT 4769 03:36:09,444 --> 03:36:19,955 OVER THE MY OTHER COLLEAGUES. 4770 03:36:44,579 --> 03:36:52,087 >> WE CAN'T HEAR YOU. I SEE 4771 03:36:52,087 --> 03:36:54,489 -- MONIQUE, YOU HEAR SNUS WE 4772 03:36:54,489 --> 03:36:57,459 CAN'T HEAR YOUF YOU ARE TRYING 4773 03:36:57,459 --> 03:37:07,836 TO USE YOUR MICROPHONE. 4774 03:37:07,836 --> 03:37:12,007 >> CAN YOU HEAR ME NOW? 4775 03:37:12,007 --> 03:37:17,312 >> IT IS VERY QUIET. ADJUST. 4776 03:37:17,312 --> 03:37:18,046 >> BETTER? 4777 03:37:18,046 --> 03:37:19,180 >> THANK YOU. 4778 03:37:19,180 --> 03:37:22,917 >> GREAT. JUST WANTED TO ECHO 4779 03:37:22,917 --> 03:37:27,355 JUST THANKING NINDS AND NIH FOR 4780 03:37:27,355 --> 03:37:28,456 THIS OPPORTUNITY. THE NEXT 4781 03:37:28,456 --> 03:37:34,562 SLIDE, PLEASE. NO DISCLOSURES. 4782 03:37:34,562 --> 03:37:35,697 ( POOR AUDIO) 4783 03:37:35,697 --> 03:37:37,132 >> FOR THIS FOURTH 4784 03:37:37,132 --> 03:37:40,769 RECOMMENDATION THE POINT WE WANT 4785 03:37:40,769 --> 03:37:43,038 TO BEIPOINT TO ACKNOWLEDGE IT TS 4786 03:37:43,038 --> 03:37:44,939 YEARS FOR SCIENTIFIC DISCOVERIES 4787 03:37:44,939 --> 03:37:47,909 AND ADVANCES TO BE IMPLEMENTED, 4788 03:37:47,909 --> 03:37:50,445 SO WE ACKNOWLEDGE WE NEED TO BE 4789 03:37:50,445 --> 03:37:51,780 ABLE TO SHARE INFORMATION. 4790 03:37:51,780 --> 03:37:55,150 THERE'S CHALLENGES WITH BEING 4791 03:37:55,150 --> 03:37:57,852 ABLE TO SHARE KNOWLEDGE AND 4792 03:37:57,852 --> 03:38:01,956 INFORMATION TO ALL INTER TESTED 4793 03:38:01,956 --> 03:38:05,560 PARTIES, ESPECIALLY INDIVIDUALS 4794 03:38:05,560 --> 03:38:06,394 WHO WOULD RECEIVE SUCH 4795 03:38:06,394 --> 03:38:07,929 INFORMATION SUCH AS PEOPLE WITH 4796 03:38:07,929 --> 03:38:10,231 TRAUMATIC BRAIN INJURY AS WELL 4797 03:38:10,231 --> 03:38:11,466 AS FAMILIES AND COMMUNITY. WE 4798 03:38:11,466 --> 03:38:13,435 HAVE FOUR SUB RECOMMENDATIONS 4799 03:38:13,435 --> 03:38:15,603 RELATED TO THIS TOPIC. THIS IS 4800 03:38:15,603 --> 03:38:17,005 ABOUT DIVERSIFYING -- HAVING A 4801 03:38:17,005 --> 03:38:23,878 DIVERSE TEAM, ADVANCING 4802 03:38:23,878 --> 03:38:30,518 FINDINGS, MAKING SURE THERE IS 4803 03:38:30,518 --> 03:38:32,987 SHARING TO OPTIMIZE ENGAGEMENT 4804 03:38:32,987 --> 03:38:35,523 WITH RESEARCH AND MAXIMIZE 4805 03:38:35,523 --> 03:38:38,927 CLINICAL TRANSLATABILITY. NEXT 4806 03:38:38,927 --> 03:38:42,397 SLIDE, PLEASE. SO FOR THIS FIRST 4807 03:38:42,397 --> 03:38:44,399 SUB RECOMMENDATION, AGAIN, TO 4808 03:38:44,399 --> 03:38:47,469 THE LEFT IS THIS IDEA OF MAKING 4809 03:38:47,469 --> 03:38:49,604 SURE WE HAVE ALL INTERESTED 4810 03:38:49,604 --> 03:38:52,240 PARTIES THAT ARE INCLUDED, 4811 03:38:52,240 --> 03:38:53,508 ESPECIALLY INDIVIDUALS WITH 4812 03:38:53,508 --> 03:38:56,344 LIVED EXPERIENCES AND THEIR 4813 03:38:56,344 --> 03:38:57,946 FAMILY. YOU KNOW , THE PRINCIPAL 4814 03:38:57,946 --> 03:38:59,747 OF NOTHING ABOUT US WITHOUT US, 4815 03:38:59,747 --> 03:39:02,150 MAKING SURE THEY ARE INCLUDED IN 4816 03:39:02,150 --> 03:39:05,854 EVERY PROCESS, FROM PLANNING, 4817 03:39:05,854 --> 03:39:07,622 IMPLEMENTATION, AS WELL AS 4818 03:39:07,622 --> 03:39:08,289 DISSEMINATION OF SUCH RESEARCH 4819 03:39:08,289 --> 03:39:09,557 AND INCLUDING OTHER INDIVIDUALS 4820 03:39:09,557 --> 03:39:12,994 AT THE TABLE, RIGHT. CLINICIAN, 4821 03:39:12,994 --> 03:39:13,895 RESEARCHERS, ADDITIONAL 4822 03:39:13,895 --> 03:39:15,697 COMMUNITY PARTNERS. AND, OF 4823 03:39:15,697 --> 03:39:17,966 COURSE W THE NEW FIELD OF 4824 03:39:17,966 --> 03:39:19,033 IMPLEMENTATION SCIENCE, YOU 4825 03:39:19,033 --> 03:39:22,103 KNOW, INCLUDING IMPLEMENTATION 4826 03:39:22,103 --> 03:39:24,339 SCIENTISTS IN ORDER FOR US TO BE 4827 03:39:24,339 --> 03:39:26,207 ABLE TO DEVELOP AND CREATE, 4828 03:39:26,207 --> 03:39:28,543 CO -CREATE SIGNATURE ROUSE 4829 03:39:28,543 --> 03:39:30,245 RESEARCH, TO REDUCE THIS BURDEN 4830 03:39:30,245 --> 03:39:34,449 OF POST-TBI, ADRD. SO NO LONGER 4831 03:39:34,449 --> 03:39:39,587 WORKING IN SILOS. TO THE RIGHT, 4832 03:39:39,587 --> 03:39:42,323 THE POINT TO EMPHASIZE IS AFTER 4833 03:39:42,323 --> 03:39:44,058 HAVING A TRAUMATIC BRAIN INJURY 4834 03:39:44,058 --> 03:39:47,695 THERE COULD BE SINGLE TRAUMATIC 4835 03:39:47,695 --> 03:39:49,030 BRAIN INJURY THAT IS SEVERE. 4836 03:39:49,030 --> 03:39:51,466 OBVIOUSLY THERE ARE A VARIETY OF 4837 03:39:51,466 --> 03:39:54,636 DIFFERENT PATHWAYS OR -- THAT 4838 03:39:54,636 --> 03:39:57,939 CAN HAPPEN AFTER AN INJURY. THEN 4839 03:39:57,939 --> 03:40:01,376 FROM RESILIENCE WHERE 4840 03:40:01,376 --> 03:40:06,281 INDIVIDUALS MAY BE -- RESUME 4841 03:40:06,281 --> 03:40:10,285 BACK TO FULL RECOVERY, WHEREAS 4842 03:40:10,285 --> 03:40:11,953 OTHERS MAY EXPERIENCE 4843 03:40:11,953 --> 03:40:13,588 PROGRESSIVE NEURO DEGENERATION. 4844 03:40:13,588 --> 03:40:15,957 AT THE LOWER END IS RELATED TO 4845 03:40:15,957 --> 03:40:17,358 INDIVIDUALS THAT MAY HAVE 4846 03:40:17,358 --> 03:40:19,194 REPEATED MILD TRAUMATIC BRAIN 4847 03:40:19,194 --> 03:40:21,930 INJURIES. SO WHAT IS REALLY AS 4848 03:40:21,930 --> 03:40:24,966 IMPORTANT IS WE HAVE TO 4849 03:40:24,966 --> 03:40:29,504 CO -CREATE OPPORTUNITIES AND 4850 03:40:29,504 --> 03:40:31,973 INTERVENTIONS AND PROGRAMMING TO 4851 03:40:31,973 --> 03:40:35,109 HELP HOW CAN WE PREVENT OR AT 4852 03:40:35,109 --> 03:40:36,911 LEAST DELAY THE PROGRESSION OF 4853 03:40:36,911 --> 03:40:40,648 POST TBIADRD. NEXT SLIDE. 4854 03:40:40,648 --> 03:40:42,850 >> TWO MINUTES. 4855 03:40:42,850 --> 03:40:45,453 >> THEN IN THE SECOND 4856 03:40:45,453 --> 03:40:46,421 SUBCOMMITTEE SETUP 4857 03:40:46,421 --> 03:40:47,589 RECOMMENDATION IS ABOUT 4858 03:40:47,589 --> 03:40:49,557 INCLUDING ALL OF THE DIFFERENT 4859 03:40:49,557 --> 03:40:51,492 TYPES OF RESEARCH, FROM 4860 03:40:51,492 --> 03:40:53,194 PRECLINICAL TO CLINICAL, BOTH IN 4861 03:40:53,194 --> 03:40:55,997 THE ADRD AND TBI SPACES AND 4862 03:40:55,997 --> 03:40:58,466 USING THESE -- THIS KNOWLEDGE TO 4863 03:40:58,466 --> 03:41:01,269 BE ABLE TO DEVELOP, VALIDATE, 4864 03:41:01,269 --> 03:41:03,238 TRANSLATE AND OBVIOUSLY 4865 03:41:03,238 --> 03:41:04,906 IMPLEMENT INTO CLINICAL 4866 03:41:04,906 --> 03:41:05,907 PRACTICE, USING DIFFERENT TYPE 4867 03:41:05,907 --> 03:41:08,276 OF DIAGNOSTIC APPROACHES AND 4868 03:41:08,276 --> 03:41:10,011 HOLISTIC INTERVENTIONS SO WE 4869 03:41:10,011 --> 03:41:11,779 CAN, AS I MENTIONED BEFORE, BE 4870 03:41:11,779 --> 03:41:18,386 ABLE TO PREVENT OR DELAY 4871 03:41:18,386 --> 03:41:20,655 POST-TBIADRD. NEXT SLIDE. THEN 4872 03:41:20,655 --> 03:41:22,190 THE THIRD SUB RECOMMENDATION, 4873 03:41:22,190 --> 03:41:25,660 RIGHT, IS, AGAIN, CREATING THIS 4874 03:41:25,660 --> 03:41:27,462 SPACE, RIGHT, A PRECOMPETITIVE 4875 03:41:27,462 --> 03:41:29,897 SPACE WHERE YOU HAVE A VARIETY 4876 03:41:29,897 --> 03:41:31,466 OF DIFFERENT INDIVIDUALS THAT 4877 03:41:31,466 --> 03:41:33,735 ARE COLLABORATING, SHARING 4878 03:41:33,735 --> 03:41:37,238 KNOWLEDGE, TRYING TO IDENTIFY 4879 03:41:37,238 --> 03:41:38,806 SOLUTIONS, SHARING DATA. YOU 4880 03:41:38,806 --> 03:41:42,176 KNOW, HELPING TO GUIDE DIFFERENT 4881 03:41:42,176 --> 03:41:44,312 METHODOLOGIES OR DEVELOPMENTS 4882 03:41:44,312 --> 03:41:46,814 AND JUST ENCOURAGING THIS SPACE 4883 03:41:46,814 --> 03:41:49,584 WITH NUMEROUS REGULATORY 4884 03:41:49,584 --> 03:41:52,654 PARTNERS, INDUSTRY PARTNERS, 4885 03:41:52,654 --> 03:41:54,489 HOSPITAL CLINICIANS, PEOPLE WITH 4886 03:41:54,489 --> 03:41:55,690 LIVED EXPERIENCE, MAKING SURE 4887 03:41:55,690 --> 03:41:58,760 EVERYONE IS AT THE TABLE TO BE 4888 03:41:58,760 --> 03:42:01,896 ABLE TO CONTRIBUTE AND HELP US 4889 03:42:01,896 --> 03:42:04,332 WITH PROMOTING THE INNOVATION 4890 03:42:04,332 --> 03:42:08,636 AND FURTHER DEVELOPING NEW 4891 03:42:08,636 --> 03:42:12,206 TECHNOLOGIES OR METHODOLOGIES 4892 03:42:12,206 --> 03:42:15,510 AND TREATMENTS EARLY BY WORKING 4893 03:42:15,510 --> 03:42:20,648 TOGETHER TO SOLVE SUCH PROBLEMS. 4894 03:42:20,648 --> 03:42:29,791 NEXT SLIDE. THEN I WILL ITERATE 4895 03:42:29,791 --> 03:42:32,327 WE HAVE TO BE ABLE TO TRANSLATE 4896 03:42:32,327 --> 03:42:33,795 OUR FINDING INTO CLINICAL 4897 03:42:33,795 --> 03:42:35,697 PRACTICE, HOW DO WE DO THAT. HOW 4898 03:42:35,697 --> 03:42:38,032 DO WE SHARE IN THE BEST WAY TO 4899 03:42:38,032 --> 03:42:41,269 SHARE INFORMATION. BOTH 4900 03:42:41,269 --> 03:42:44,205 RECIPROCAL, RIGHT, INDIVIDUALS 4901 03:42:44,205 --> 03:42:52,280 THAT INDIVIDUALS WITH LIVED 4902 03:42:52,280 --> 03:42:52,814 XHEE 4903 03:42:52,814 --> 03:42:54,382 EXPERIENCE MAY SUPPORT THE 4904 03:42:54,382 --> 03:42:56,317 RESEARCH PROCESS AND PROMOTE 4905 03:42:56,317 --> 03:42:58,052 FURTHER ENGAGEMENT. INCLUDING A 4906 03:42:58,052 --> 03:43:00,388 VARIETY OF DIFFERENT PARTNERS, 4907 03:43:00,388 --> 03:43:05,293 SPECIAL INSTITUTIONAL 4908 03:43:05,293 --> 03:43:06,527 THOSE WITH THE BRAIN INJURY 4909 03:43:06,527 --> 03:43:07,395 ASSOCIATION OF AMERICA AGAIN NOT 4910 03:43:07,395 --> 03:43:10,465 WORKING IN SILOS BUT WORKING 4911 03:43:10,465 --> 03:43:12,066 TOGETHER WITH A VARIETY OF 4912 03:43:12,066 --> 03:43:14,936 DIFFERENT PARTNERS ENSURING THAT 4913 03:43:14,936 --> 03:43:16,671 WE HELP PROMOTE AND SHARE THE 4914 03:43:16,671 --> 03:43:19,073 KNOWLEDGE AND ALL THE FINDINGS 4915 03:43:19,073 --> 03:43:21,075 THAT WE HAVE BASED OFF THE 4916 03:43:21,075 --> 03:43:22,543 RESEARCH THAT WE'RE DOING AND 4917 03:43:22,543 --> 03:43:25,113 THAT MAKES THE RESEARCH, BETTER, 4918 03:43:25,113 --> 03:43:25,747 RIGHT. 4919 03:43:25,747 --> 03:43:28,649 HOW CAN WE ENGAGE ALL 4920 03:43:28,649 --> 03:43:31,052 INDIVIDUALS IN THE PROCESS TO 4921 03:43:31,052 --> 03:43:35,723 HELP IMPROVE CLINICAL PRACTICE 4922 03:43:35,723 --> 03:43:37,458 AS WELL AS INFORM -- MAKING SURE 4923 03:43:37,458 --> 03:43:38,493 INDIVIDUALS ARE AT THE RECEIVING 4924 03:43:38,493 --> 03:43:42,296 END AND MAKING SURE THAT THERE 4925 03:43:42,296 --> 03:43:43,498 ARE DIVERSE INDIVIDUALS. 4926 03:43:43,498 --> 03:43:48,002 SO JUST INCLUDING A VARIETY OF 4927 03:43:48,002 --> 03:43:48,669 DIFFERENT INTERESTED PARTIES OR 4928 03:43:48,669 --> 03:43:59,147 STAKEHOLDERS IN THE PROCESS. 4929 03:44:03,885 --> 03:44:05,086 >> THANK YOU, MONIQUE AND 4930 03:44:05,086 --> 03:44:08,322 EVERYONE TO PARTICIPATED ON THE 4931 03:44:08,322 --> 03:44:08,656 SUBCOMMITTEE. 4932 03:44:08,656 --> 03:44:09,524 WE HAVE A FEW MINUTES NOW FOR 4933 03:44:09,524 --> 03:44:19,734 DISCUSSION. 4934 03:44:21,969 --> 03:44:24,605 >> WE'RE RUNNING A LITTLE LATE 4935 03:44:24,605 --> 03:44:25,339 SO WE'LL HAVE 15 MINUTES FOR 4936 03:44:25,339 --> 03:44:28,643 DISCUSSION. 4937 03:44:28,643 --> 03:44:33,981 >> THANK YOU. 4938 03:44:33,981 --> 03:44:37,785 AMBER, I CAN'T SEE HANDS RAISED 4939 03:44:37,785 --> 03:44:38,986 SO IF YOU DO -- 4940 03:44:38,986 --> 03:44:41,823 >> RIGHT NOW I DO NOT SEE HANDS 4941 03:44:41,823 --> 03:44:42,290 RAISED. 4942 03:44:42,290 --> 03:44:44,025 LET ME CHECK VIDEOCAST. 4943 03:44:44,025 --> 03:44:50,064 >> I SEE PENNY. 4944 03:44:50,064 --> 03:44:55,837 PENNY ARE YOU ABLE TO UNMUTE? 4945 03:44:55,837 --> 03:44:57,038 >> WORKING ON IT. 4946 03:44:57,038 --> 03:44:59,941 TOOK A MINUTE. 4947 03:44:59,941 --> 03:45:00,141 SORRY. 4948 03:45:00,141 --> 03:45:01,676 YOU GUYS HAVE DONE A WONDERFUL 4949 03:45:01,676 --> 03:45:01,843 JOB. 4950 03:45:01,843 --> 03:45:03,077 THANK YOU FOR PULLING THIS 4951 03:45:03,077 --> 03:45:03,511 TOGETHER. 4952 03:45:03,511 --> 03:45:04,912 MY QUESTION IS THERE WERE A 4953 03:45:04,912 --> 03:45:06,781 COUPLE TIMES IN THE DISCUSSION 4954 03:45:06,781 --> 03:45:12,620 WHERE IT HEARD THE REFERENCE 4955 03:45:12,620 --> 03:45:15,323 BETWEEN TBI AND ALZHEIMER'S AND 4956 03:45:15,323 --> 03:45:17,992 A KNOWLEDGE SHARING BETWEEN THE 4957 03:45:17,992 --> 03:45:18,993 TBI AND ALZHEIMER'S FIELD AND 4958 03:45:18,993 --> 03:45:24,365 YET TBI IS NOT JUST RELATED TO 4959 03:45:24,365 --> 03:45:27,935 ALZHEIMER'S IT'S RELATED TO THE 4960 03:45:27,935 --> 03:45:31,172 COMPLEX IDEOLOGY AND BEHIND 4961 03:45:31,172 --> 03:45:33,608 HAVING NOT JUST ALZHEIMER'S BUT 4962 03:45:33,608 --> 03:45:37,144 ALSO THE PLACE WHERE FTD AND ALS 4963 03:45:37,144 --> 03:45:37,845 IS WELCOME. 4964 03:45:37,845 --> 03:45:40,448 WELCOME HOW THE TBI FIELD AND 4965 03:45:40,448 --> 03:45:41,749 HOW YOUR RECOMMENDATIONS ARE 4966 03:45:41,749 --> 03:45:43,384 THINKING ABOUT THE HOLISTIC 4967 03:45:43,384 --> 03:45:46,654 CAUSES OF DEMENTIA AND HOW HEAD 4968 03:45:46,654 --> 03:45:48,756 IMPACT AND TBI AND FORGIVE ME 4969 03:45:48,756 --> 03:45:50,825 BECAUSE I'M PROBABLY GET YOUR 4970 03:45:50,825 --> 03:45:53,461 TERMINOLOGY LONG, I KNOW IT'S 4971 03:45:53,461 --> 03:45:53,761 COMPLICATED. 4972 03:45:53,761 --> 03:45:55,963 HOW DO THEY RELATE TO DIFFERENT 4973 03:45:55,963 --> 03:45:56,831 FORMS OF DEMENTIA? 4974 03:45:56,831 --> 03:45:59,267 I'LL STOP. 4975 03:45:59,267 --> 03:46:00,668 >> THANK YOU, PENNY. 4976 03:46:00,668 --> 03:46:02,603 IT'S A GREAT QUESTION. 4977 03:46:02,603 --> 03:46:04,639 IT ACKNOWLEDGES THE EVOLUTION OF 4978 03:46:04,639 --> 03:46:06,440 SCIENCE IN THE SPACE. 4979 03:46:06,440 --> 03:46:08,409 FOR DECADES WE WERE ALL TAUGHT 4980 03:46:08,409 --> 03:46:11,178 TRAUMATIC BRAIN INJURY WAS THE 4981 03:46:11,178 --> 03:46:11,779 GREATEST ENVIRONMENTAL RISK 4982 03:46:11,779 --> 03:46:13,014 FACTOR FOR ALZHEIMER'S DISEASE 4983 03:46:13,014 --> 03:46:14,315 IN PARTICULAR. 4984 03:46:14,315 --> 03:46:16,651 IN THE ENSUING DECADES WE HAVE 4985 03:46:16,651 --> 03:46:20,021 COME TO APPRECIATE THAT WE 4986 03:46:20,021 --> 03:46:22,924 ACTUALLY DO NOT SEE ALZHEIMER'S 4987 03:46:22,924 --> 03:46:24,158 DISEASE NEUROPATHOLOGY AS 4988 03:46:24,158 --> 03:46:25,660 COMMONLY AS WE WOULD HAVE 4989 03:46:25,660 --> 03:46:27,762 EXPECTED IF THAT WERE 4990 03:46:27,762 --> 03:46:30,398 EXCLUSIVELY TRUE. 4991 03:46:30,398 --> 03:46:35,102 TRAUMATIC BRAIN INJURY AND 4992 03:46:35,102 --> 03:46:36,938 POST-TRAUMATIC BRAIN IS A 4993 03:46:36,938 --> 03:46:42,143 DEMENTIA AND INHERENT THAT A 4994 03:46:42,143 --> 03:46:45,513 TRAUMATIC BRAIN INJURY IS ONE OF 4995 03:46:45,513 --> 03:46:49,150 LIFE EXPOSURES OVERLAID TO OTHER 4996 03:46:49,150 --> 03:46:53,087 EXPOSURES THAT MAY HAVE IMPACTED 4997 03:46:53,087 --> 03:46:54,689 DEMENTIA RISK IN A GIVEN 4998 03:46:54,689 --> 03:46:55,156 INDIVIDUAL. 4999 03:46:55,156 --> 03:46:56,857 DR. GRANT, IT WOULD BE GREAT IF 5000 03:46:56,857 --> 03:46:58,759 YOU'D BE WILLING TO TOUCH ON 5001 03:46:58,759 --> 03:46:59,827 THIS TOO. 5002 03:46:59,827 --> 03:47:01,162 I KNOW WE SPENT TIME THINKING 5003 03:47:01,162 --> 03:47:02,630 THROUGH THIS IN OUR MEETINGS ON 5004 03:47:02,630 --> 03:47:03,764 THE IMPORTANCE OF UNDERSTANDING 5005 03:47:03,764 --> 03:47:08,636 HOW A NEW ONSET TRAUMATIC BRAIN 5006 03:47:08,636 --> 03:47:18,879 INJURY MY IMPACT DISEASES AND 5007 03:47:18,879 --> 03:47:20,181 DIAGNOSES AND USE OF EXISTING 5008 03:47:20,181 --> 03:47:20,648 TREATMENT. 5009 03:47:20,648 --> 03:47:30,257 >> THANKS FOR THE QUESTION. 5010 03:47:30,257 --> 03:47:32,627 IT'S THE QUESTION AND I DON'T 5011 03:47:32,627 --> 03:47:34,195 WANT TO OVEREMPHASIZE THE LINK. 5012 03:47:34,195 --> 03:47:35,963 THERE'S A VERY GOOD EXAMPLE OF A 5013 03:47:35,963 --> 03:47:38,733 COMMUNITY THAT WORKS WELL AND 5014 03:47:38,733 --> 03:47:41,335 THEY COVER LOTS OF ETIOLOGIES. 5015 03:47:41,335 --> 03:47:45,906 WE NEED TO BE TALKING TO A VERY 5016 03:47:45,906 --> 03:47:47,675 WIDE RANGE OF SPECIALIST GROUPS 5017 03:47:47,675 --> 03:47:50,411 AND TRYING TO BRIDGE ACROSS 5018 03:47:50,411 --> 03:47:52,647 THESE BECAUSE THERE ARE 5019 03:47:52,647 --> 03:47:55,416 INTERESTING AND SCIENTIFICALLY 5020 03:47:55,416 --> 03:47:56,584 INFORMATIVE OVERLAPS BETWEEN 5021 03:47:56,584 --> 03:47:58,452 WHAT YOU SEE AND TBI. 5022 03:47:58,452 --> 03:48:00,454 IT TOUCHES ON OUR IGNORANCE OF 5023 03:48:00,454 --> 03:48:01,856 THE GENERAL HIGH LEVEL THINGS 5024 03:48:01,856 --> 03:48:02,757 LIKE AGING. 5025 03:48:02,757 --> 03:48:08,529 IT'S NOT CLEAR WHAT TBI DOES TO 5026 03:48:08,529 --> 03:48:10,731 YOUR NEURODEGENERATIVE 5027 03:48:10,731 --> 03:48:12,366 TRAJECTORY AND MIGHT ACCELERATE 5028 03:48:12,366 --> 03:48:15,102 WHAT WOULD HAVE HAPPENED ANYWAY. 5029 03:48:15,102 --> 03:48:16,170 THERE'S A LOT OF WORK TO BE DONE 5030 03:48:16,170 --> 03:48:17,938 AND WE'RE THINKING INCREASINGLY 5031 03:48:17,938 --> 03:48:20,641 OPEN MINDED AND IT'S CHALLENGING 5032 03:48:20,641 --> 03:48:23,544 AS A CONDITION TO TREAT BECAUSE 5033 03:48:23,544 --> 03:48:27,248 CO-PATHOLOGY IS SO COMMON OR 5034 03:48:27,248 --> 03:48:28,649 POLY PATHOLOGY AND IN THE 5035 03:48:28,649 --> 03:48:30,518 SPORTING CONTEXT THERE'S A GREAT 5036 03:48:30,518 --> 03:48:33,421 DEAL OF TALK WITH CTE AND IT'S 5037 03:48:33,421 --> 03:48:33,754 ALMOST A BRANDING 5038 03:48:35,389 --> 03:48:40,628 BUT OF COURSE WE INCREASINGLY 5039 03:48:40,628 --> 03:48:41,629 RECOGNIZE CO-PATHOLOGIES ARE 5040 03:48:41,629 --> 03:48:43,130 EXTREMELY COMMON AFTER HEAD 5041 03:48:43,130 --> 03:48:44,765 IMPACTS AND EVEN IF YOU WERE TO 5042 03:48:44,765 --> 03:48:47,368 TREAT THE CTE PATHOLOGY IN ALL 5043 03:48:47,368 --> 03:48:49,737 THOSE GROUPS THEN YOU'D PROBABLY 5044 03:48:49,737 --> 03:48:51,839 FIND THERE'S STILL A GREAT DEAL 5045 03:48:51,839 --> 03:48:55,876 OF DEMENTIA VARIANTS KIND OF 5046 03:48:55,876 --> 03:48:56,143 UNTREATED. 5047 03:48:56,143 --> 03:49:03,117 IT'S A GREAT CONDITION I'D ARGUE 5048 03:49:03,117 --> 03:49:04,185 TO MEASURE INFLAMMATION AND 5049 03:49:04,185 --> 03:49:05,853 PATHOLOGY AND TARGETING 5050 03:49:05,853 --> 03:49:07,421 DIFFERENT THINGS BUT WORKING AT 5051 03:49:07,421 --> 03:49:09,390 AN INDIVIDUAL LEVEL WHAT'S 5052 03:49:09,390 --> 03:49:09,657 HAPPENING. 5053 03:49:09,657 --> 03:49:15,463 THAT'S MY TAKE ON IT BUT THERE'S 5054 03:49:15,463 --> 03:49:17,298 LOTS OF WORK THAT NEEDS TO BE 5055 03:49:17,298 --> 03:49:17,498 DONE. 5056 03:49:17,498 --> 03:49:28,008 >> I WORK FOR THE ASSOCIATION 5057 03:49:28,743 --> 03:49:29,510 FRONTOTEM 5058 03:49:29,510 --> 03:49:30,878 FRONTOTEMPORAL DEGENERATION AND 5059 03:49:30,878 --> 03:49:32,680 HEAD IMPACT WAS UP BUT LITTLE IS 5060 03:49:32,680 --> 03:49:34,849 KNOWN FROM IT BUT FROM A 5061 03:49:34,849 --> 03:49:36,083 THEORETICAL SIDE THAT NO REASON 5062 03:49:36,083 --> 03:49:40,654 TO THINK IT WOULDN'T HAVE A 5063 03:49:40,654 --> 03:49:42,890 SIGNIFICANT RELATIONSHIP. 5064 03:49:42,890 --> 03:49:45,893 >> IT'S IMPORTANT TO RECOGNIZE 5065 03:49:45,893 --> 03:49:47,928 OUR RECOMMENDATIONS ARE STRIVING 5066 03:49:47,928 --> 03:49:51,132 TO FY WHAT ARE THE UNIQUE 5067 03:49:51,132 --> 03:49:53,167 PATHOLOGIES OF DISTINCT IT HEAD 5068 03:49:53,167 --> 03:49:55,136 TRAUMA EXPOSURES SUB TYPES AND 5069 03:49:55,136 --> 03:50:00,641 HOW DO THEY INTERACT WITH THE 5070 03:50:00,641 --> 03:50:01,642 PATHOLOGIES OF BETTER KNOWN 5071 03:50:01,642 --> 03:50:02,443 ADRDs? 5072 03:50:02,443 --> 03:50:04,545 THIS IS THE HALLMARK OF WHAT 5073 03:50:04,545 --> 03:50:05,546 WE'RE TRYING TO PRIORITIZE 5074 03:50:05,546 --> 03:50:07,181 ACROSS OUR RECOMMENDATIONS. 5075 03:50:07,181 --> 03:50:10,751 AND WE ALSO TRY TO EMPHASIZE 5076 03:50:10,751 --> 03:50:14,488 THAT RECOGNIZE THE RELATIVE 5077 03:50:14,488 --> 03:50:18,192 INFANCY OF OUR RESEARCH AND THIS 5078 03:50:18,192 --> 03:50:19,660 HAS BEEN STUDIED FOR CENTURIES. 5079 03:50:19,660 --> 03:50:22,563 AND SO WE WANT TO LEARN FROM OUR 5080 03:50:22,563 --> 03:50:25,966 COLLEAGUES WHO HAVE BEEN AT IT 5081 03:50:25,966 --> 03:50:28,602 LONGER AND USE THE TREMENDOUS 5082 03:50:28,602 --> 03:50:30,371 WORK THAT'S ALREADY BEEN DONE AS 5083 03:50:30,371 --> 03:50:32,039 A STARTING POINT AND CONTINUE 5084 03:50:32,039 --> 03:50:33,274 COLLABORATION SO WE CAN 5085 03:50:33,274 --> 03:50:33,908 ACCELERATE KNOWLEDGE AS QUICKLY 5086 03:50:33,908 --> 03:50:36,143 AS POSSIBLE. 5087 03:50:36,143 --> 03:50:46,687 I SEE A QUESTION FROM NICOLE 5088 03:50:48,722 --> 03:50:58,933 BR --BJORKLUND. 5089 03:51:00,968 --> 03:51:03,470 >> WHEN WE KNOW ABOUT THE 5090 03:51:03,470 --> 03:51:04,271 PARTNER VIOLENCE AND WE DON'T 5091 03:51:04,271 --> 03:51:06,874 KNOW WHAT THE IMPACT OF THAT IS 5092 03:51:06,874 --> 03:51:09,710 COMPREHENSIVELY BUT ONE QUESTION 5093 03:51:09,710 --> 03:51:10,878 I HAD WAS CONSIDERING WHAT 5094 03:51:10,878 --> 03:51:13,247 YOU'RE STUDYING IT SEEMS LIKE 5095 03:51:13,247 --> 03:51:16,417 THERE SHOULD BE MORE WORK WITH 5096 03:51:16,417 --> 03:51:21,422 THE AND DOD, ARE THERE 5097 03:51:21,422 --> 03:51:23,290 POSSIBILITIES OF INCORPORATING 5098 03:51:23,290 --> 03:51:25,893 OR MESHING WITH THEM IN TERMS OF 5099 03:51:25,893 --> 03:51:36,303 DATA AND BIO SPECIMENS? 5100 03:51:37,404 --> 03:51:38,839 >> I THINK WE HAVE SOMEONE TO 5101 03:51:38,839 --> 03:51:39,173 SPEAK TO THIS. 5102 03:51:39,173 --> 03:51:39,240 5103 03:51:55,289 --> 03:52:01,228 >> EVERYTHING WE DO IS IN 5104 03:52:01,228 --> 03:52:06,934 PARTNERSHIP AND WITH NINDS AND 5105 03:52:06,934 --> 03:52:08,435 DOD AND V.A. AND DR. HOFFMAN IS 5106 03:52:08,435 --> 03:52:10,638 A WORKING MEMBER ON THIS 5107 03:52:10,638 --> 03:52:10,905 COMMITTEE. 5108 03:52:10,905 --> 03:52:14,008 IF YOU HAVE SOMETHING TO ADD 5109 03:52:14,008 --> 03:52:14,174 TOO. 5110 03:52:14,174 --> 03:52:14,241 5111 03:52:23,651 --> 03:52:28,088 >> YOU'RE ON MUTE. 5112 03:52:28,088 --> 03:52:30,691 DOES SOMEONE NEED TO ENABLE YOUR 5113 03:52:30,691 --> 03:52:30,991 MICROPHONE. 5114 03:52:30,991 --> 03:52:31,725 >> NOW IT'S ON. 5115 03:52:31,725 --> 03:52:32,860 EVERYONE CAN HEAR ME? 5116 03:52:32,860 --> 03:52:34,395 >> YES. 5117 03:52:34,395 --> 03:52:35,396 >> YEAH. 5118 03:52:35,396 --> 03:52:37,398 THE LONG-TERM ISSUES IS A 5119 03:52:37,398 --> 03:52:40,034 PRIORITY FOR THE V.A. BECAUSE 5120 03:52:40,034 --> 03:52:43,237 UNLIKE DOD AROUND MANY OF THE 5121 03:52:43,237 --> 03:52:44,939 HOSPITAL SYSTEMS OUT THERE, WE 5122 03:52:44,939 --> 03:52:48,642 DON'T TREAT ACUTE TBI. 5123 03:52:48,642 --> 03:52:53,714 WE GET THE PERSON AFTER THEY 5124 03:52:53,714 --> 03:52:55,215 HAVE HAD LIFE TIME BRAIN 5125 03:52:55,215 --> 03:52:55,783 INJURIES. 5126 03:52:55,783 --> 03:53:00,321 SO WE TRY TO WORK BACK THAT. 5127 03:53:00,321 --> 03:53:02,256 WE HAVE TWO LONGITUDINAL STUDIES 5128 03:53:02,256 --> 03:53:03,524 THAT ARE ONGOING. 5129 03:53:03,524 --> 03:53:06,961 ONE IS STARTING FROM 2010 AND 5130 03:53:06,961 --> 03:53:15,269 THE OTHER ABOUT 2013 THE V.A. IS 5131 03:53:15,269 --> 03:53:19,106 NOW GOING TO CARRY IT ON FOR THE 5132 03:53:19,106 --> 03:53:19,974 FORESEEABLE FUTURE. 5133 03:53:19,974 --> 03:53:21,608 AND WE'RE ACTUALLY HARMONIZING 5134 03:53:21,608 --> 03:53:23,844 THE DATA BETWEEN THE TWO THAT 5135 03:53:23,844 --> 03:53:27,748 WILL HELP US TO UNDERSTAND 5136 03:53:27,748 --> 03:53:30,217 CRITICAL BIOMARKERS FOR 5137 03:53:30,217 --> 03:53:31,352 DIAGNOSTIC PURPOSES AND PERHAPS 5138 03:53:31,352 --> 03:53:35,289 ALLOW US TO EVEN APPROACH HOW TO 5139 03:53:35,289 --> 03:53:37,224 MAYBE DEVELOP TREATMENTS THAT 5140 03:53:37,224 --> 03:53:39,960 ARE MECHANISTIC IN THE FUTURE 5141 03:53:39,960 --> 03:53:40,761 FOR SOME OF THESE MORE 5142 03:53:40,761 --> 03:53:47,234 PROGRESSIVE PROCESSES. 5143 03:53:47,234 --> 03:53:49,236 LIKE YOU ASKED, IT IS A MAJOR 5144 03:53:49,236 --> 03:53:50,738 PRIORITY AND WE DO COLLABORATE 5145 03:53:50,738 --> 03:53:53,707 ESPECIALLY AT POLY TRAUMA 5146 03:53:53,707 --> 03:53:56,677 CENTERS COLLABORATE WITH THE TBI 5147 03:53:56,677 --> 03:54:00,280 MODEL SYSTEMS AND SO OUR MODEL 5148 03:54:00,280 --> 03:54:04,018 SYSTEM IS CONSIDERS THE CIVILIAN 5149 03:54:04,018 --> 03:54:06,620 VERSION A CRITICAL PARTNER WE'VE 5150 03:54:06,620 --> 03:54:09,289 BEEN TEAMING UP WITH WELL OVER 5151 03:54:09,289 --> 03:54:11,258 10 YEARS. 5152 03:54:11,258 --> 03:54:14,428 THIS IS THE IMPORTANT PART, TBI 5153 03:54:14,428 --> 03:54:19,867 AS CMS, CENTERS FOR MEDICAID -- 5154 03:54:19,867 --> 03:54:23,370 SORRY, I DON'T REMEMBER ALL THE 5155 03:54:23,370 --> 03:54:27,007 CMS INITIALS. 5156 03:54:27,007 --> 03:54:28,642 I'M FORGETTING ON THE SPOT HERE, 5157 03:54:28,642 --> 03:54:30,144 BUT THEY HAVE NOW RECOGNIZED 5158 03:54:30,144 --> 03:54:31,845 SOMETHING THAT THE V.A. HAS 5159 03:54:31,845 --> 03:54:36,183 RECOGNIZED SINCE 2011 THAT TBI 5160 03:54:36,183 --> 03:54:37,651 IS A CHRONIC CONDITION. 5161 03:54:37,651 --> 03:54:40,287 SO WE IN OUR FEDERAL PARTNERS 5162 03:54:40,287 --> 03:54:44,058 AND NIH AND DOD, THIS ASPECT IS 5163 03:54:44,058 --> 03:54:44,691 A HIGH PRIORITY SO THANK YOU FOR 5164 03:54:44,691 --> 03:54:47,027 THE QUESTION. 5165 03:54:47,027 --> 03:54:47,761 >> THANKS. 5166 03:54:47,761 --> 03:54:51,632 I ALSO WANTED TO ADD THAT WE 5167 03:54:51,632 --> 03:54:54,935 HAVE THE BIO REPOSITORY WHERE 5168 03:54:54,935 --> 03:54:58,138 WE'RE NOW LINKING THE TISSUE AND 5169 03:54:58,138 --> 03:55:00,340 FLUIDS BIO SAMPLES WITH THE DATA 5170 03:55:00,340 --> 03:55:03,510 FROM THE CLINICAL STUDIES AS 5171 03:55:03,510 --> 03:55:05,746 WELL AS THE BRAIN BANKS. 5172 03:55:05,746 --> 03:55:09,883 SO THERE'S DEFINITELY A LOT OF 5173 03:55:09,883 --> 03:55:10,918 ADDITIONAL INFORMATION THAT WE 5174 03:55:10,918 --> 03:55:14,488 GET WHEN WE HAVE A COMPREHENSIVE 5175 03:55:14,488 --> 03:55:16,056 COALITION OF ALL THE DATA AND 5176 03:55:16,056 --> 03:55:17,024 WE'RE EXCITED TO SEE HOW THINGS 5177 03:55:17,024 --> 03:55:20,594 WILL MOVE FORWARD AND I ALSO 5178 03:55:20,594 --> 03:55:27,201 WANTED TO GIVE TIME FOR SARAH 5179 03:55:27,201 --> 03:55:28,869 FONTANE THE DOD PARTNER, IF YOU 5180 03:55:28,869 --> 03:55:31,271 HAVE ANYTHING TO ADD. 5181 03:55:31,271 --> 03:55:36,043 >> I WANTED TO ADD IN THAT 5182 03:55:36,043 --> 03:55:38,879 THERE'S OFTEN A STIGMA THE DOD 5183 03:55:38,879 --> 03:55:40,481 WORKS WITH AND WHILE THERE CAN 5184 03:55:40,481 --> 03:55:41,915 BE, THERE'S MANY RESEARCHERS 5185 03:55:41,915 --> 03:55:44,184 WITHIN THE DOD WILLING TO WORK 5186 03:55:44,184 --> 03:55:47,454 ON THIS LONG TERM EFFECT OF WHAT 5187 03:55:47,454 --> 03:55:50,657 IS HAPPENING WITH THE TISSUES, 5188 03:55:50,657 --> 03:55:53,660 WITH THE BIO SAMPLES WE HAVE 5189 03:55:53,660 --> 03:55:53,894 BANKED. 5190 03:55:53,894 --> 03:56:04,404 WE'VE GOT COLLABORATIVE FOLKS. 5191 03:56:08,709 --> 03:56:11,345 THE WHOLE POINT IS TO LOOK AT 5192 03:56:11,345 --> 03:56:13,814 THE DEGENERATION AND RELATED 5193 03:56:13,814 --> 03:56:15,549 DEMENTIAS BECAUSE WE SIMPLY 5194 03:56:15,549 --> 03:56:16,316 DON'T HAVE ENOUGH INFORMATION IN 5195 03:56:16,316 --> 03:56:20,487 THE AREA OF THE FIELD TO BE ABLE 5196 03:56:20,487 --> 03:56:24,625 TO DISTINGUISH WHAT, IF ANY, IS 5197 03:56:24,625 --> 03:56:27,194 THE LIKELY POST TBI PATHOLOGY 5198 03:56:27,194 --> 03:56:29,096 WE'LL END UP WITH WE'RE 5199 03:56:29,096 --> 03:56:30,931 INCLUSIVE THERE BUT THERE'S A 5200 03:56:30,931 --> 03:56:31,932 WHOLE RESEARCH PROGRAM THAT I 5201 03:56:31,932 --> 03:56:33,634 MANAGE THAT FOCUSES PRIMARILY ON 5202 03:56:33,634 --> 03:56:36,637 THAT. 5203 03:56:36,637 --> 03:56:38,605 SO, THANK YOU. 5204 03:56:38,605 --> 03:56:40,941 >> I JUST WANT TO ADD ONE MORE 5205 03:56:40,941 --> 03:56:41,141 THING. 5206 03:56:41,141 --> 03:56:44,244 THE V.A. ALSO THROUGH THE WORK 5207 03:56:44,244 --> 03:56:52,519 OF DR. PUGH HAS A DATA SET FOR 5208 03:56:52,519 --> 03:56:53,987 VETERANS GOING BACK TO THEIR 5209 03:56:53,987 --> 03:56:57,090 MILITARY SERVICE AND THAT NUMBER 5210 03:56:57,090 --> 03:57:07,501 IS ABOUT OVER 2 MILLION. 5211 03:57:12,306 --> 03:57:15,709 AROUND AND LOOKING AT THEIR 5212 03:57:15,709 --> 03:57:16,410 HEALTH CURRENTLY. 5213 03:57:16,410 --> 03:57:20,080 WHETHER IT'S DEMENTIA OR OTHER 5214 03:57:20,080 --> 03:57:22,749 ASPECTS OF BRAIN HEALTH, WE HAVE 5215 03:57:22,749 --> 03:57:23,350 THAT MILITARY DATA SET THAT'S 5216 03:57:23,350 --> 03:57:26,954 AVAILABLE. 5217 03:57:26,954 --> 03:57:28,188 >> THANK YOU ALL. 5218 03:57:28,188 --> 03:57:30,257 YOU CAN SEE OUR SUBCOMMITTEE IS 5219 03:57:30,257 --> 03:57:31,091 LUCKY TO HAVE OUR FEDERAL 5220 03:57:31,091 --> 03:57:32,926 COLLEAGUES WEIGH IN AND NICOLE, 5221 03:57:32,926 --> 03:57:34,861 GREAT QUESTION, THAT ALLOWS US 5222 03:57:34,861 --> 03:57:36,630 TO UNDER SCORE THE THEME ACROSS 5223 03:57:36,630 --> 03:57:38,232 OUR RECOMMENDATION WE NEED TO 5224 03:57:38,232 --> 03:57:39,266 BREAK DOWN BARRIERS AND 5225 03:57:39,266 --> 03:57:40,467 COLLABORATE AND WORK ACROSS 5226 03:57:40,467 --> 03:57:40,734 AGENCIES. 5227 03:57:40,734 --> 03:57:43,270 THANK YOU FOR THAT. 5228 03:57:43,270 --> 03:57:53,580 I SEE IAN KREMER. 5229 03:57:53,580 --> 03:57:56,617 >> I APOLOGIZE IF I MISSED THIS 5230 03:57:56,617 --> 03:57:59,186 BUT I LOST CONNECTIVITY EARLIER 5231 03:57:59,186 --> 03:57:59,786 IN THE TALK. 5232 03:57:59,786 --> 03:58:01,388 DO THE RESEARCH RECOMMENDATIONS 5233 03:58:01,388 --> 03:58:03,757 ADDRESS ONE OR BOTH OF THE 5234 03:58:03,757 --> 03:58:04,391 FOLLOWING POSSIBILITIES. 5235 03:58:04,391 --> 03:58:09,396 ONE IS LOOKING AT OTHER FORMS OF 5236 03:58:09,396 --> 03:58:10,530 DEMENTIA THAT HAVE HIGH INCI 5237 03:58:10,530 --> 03:58:12,065 INCIDENTS OF FALLS AS POTENTIAL 5238 03:58:12,065 --> 03:58:15,769 DRIVERS OF TBI AND THEREFORE AS 5239 03:58:15,769 --> 03:58:17,671 RISK REDUCTION POSSIBILITIES AND 5240 03:58:17,671 --> 03:58:20,641 THE OTHER IS THE RESEARCH 5241 03:58:20,641 --> 03:58:22,876 RECOMMENDATIONS ADDRESS 5242 03:58:22,876 --> 03:58:24,344 OPPORTUNITIES TO COLLABORATE 5243 03:58:24,344 --> 03:58:26,446 WITH THE INTERNATIONAL RESEARCH 5244 03:58:26,446 --> 03:58:28,649 COMMUNITY PARTICULARLY COUNTRIES 5245 03:58:28,649 --> 03:58:34,821 WITH EXTENSIVE HISTORIES DURING 5246 03:58:34,821 --> 03:58:40,627 WARTIME TO STUDY TBI IN THE 5247 03:58:40,627 --> 03:58:44,264 NON-U.S.-BASED POPULATIONS. 5248 03:58:44,264 --> 03:58:46,066 >> THAT'S A GREAT QUESTION AND 5249 03:58:46,066 --> 03:58:47,434 KEEP IN MIND PART OF THE MAIN 5250 03:58:47,434 --> 03:58:50,137 GOALS OF THE DAY TOGETHER IS TO 5251 03:58:50,137 --> 03:58:52,372 SOLICIT INPUT ON OUR 5252 03:58:52,372 --> 03:58:52,739 RECOMMENDATIONS. 5253 03:58:52,739 --> 03:58:54,641 AND MAKING SOME NOTES, THESE ARE 5254 03:58:54,641 --> 03:58:55,509 GREAT IDEAS. 5255 03:58:55,509 --> 03:58:57,077 HEATHER SNYDER ARE YOU STILL 5256 03:58:57,077 --> 03:58:58,545 WITH US TO SPEAK TO THE QUESTION 5257 03:58:58,545 --> 03:58:59,846 PERTAINING TO FALLS AND 5258 03:58:59,846 --> 03:59:05,919 RELATIONSHIPS WITH POST-TBI 5259 03:59:05,919 --> 03:59:06,186 DEMENTIAS? 5260 03:59:06,186 --> 03:59:08,055 >> I DON'T THINK SO. 5261 03:59:08,055 --> 03:59:09,323 >> IT'S SUCH AN IMPORTANT AREA 5262 03:59:09,323 --> 03:59:11,358 OF RESEARCH. 5263 03:59:11,358 --> 03:59:14,861 A LOT OF STUDIES HAVE EXAMINED 5264 03:59:14,861 --> 03:59:15,662 ASSOCIATIONS OF FALLS WITH 5265 03:59:15,662 --> 03:59:19,666 DEMENTIA RISK AND MANY ASSUMED 5266 03:59:19,666 --> 03:59:22,369 TRAUMATIC BRAIN INJURY IS THE 5267 03:59:22,369 --> 03:59:25,839 CONFOUNDER AND A COUPLE STUDIES 5268 03:59:25,839 --> 03:59:29,543 FOUND THAT AND THE NOTION THAT A 5269 03:59:29,543 --> 03:59:33,313 FALL MAY BE A HARBINGER OR AN 5270 03:59:33,313 --> 03:59:36,383 EARLY SIGN OF A 5271 03:59:36,383 --> 03:59:37,884 NEURODEGENERATIVE PROCESS I 5272 03:59:37,884 --> 03:59:40,854 THINK REQUIRES INVESTIGATION AND 5273 03:59:40,854 --> 03:59:50,063 SPANS BEYOND OUR SUBCOMMITTEE. 5274 03:59:50,063 --> 03:59:52,632 THERE'S A NEED TO UNDERSTAND HOW 5275 03:59:52,632 --> 03:59:54,735 NUANCED THE TRAUMATIC BRAIN 5276 03:59:54,735 --> 03:59:55,535 INJURY, IN LATE LIFE, FOR 5277 03:59:55,535 --> 03:59:59,840 EXAMPLE, INTERACTS WITH OTHER 5278 03:59:59,840 --> 04:00:00,640 NEURODEGENERATIVE PROCESSES AND 5279 04:00:00,640 --> 04:00:01,942 MAY HAVE RESULTED FROM LATE LIFE 5280 04:00:01,942 --> 04:00:05,345 FALLS WHICH IS A CRITICAL TARGET 5281 04:00:05,345 --> 04:00:12,552 FOR PREVENTION. 5282 04:00:12,552 --> 04:00:16,623 >> FOR THE SECOND QUESTION ABOUT 5283 04:00:16,623 --> 04:00:19,292 COUNTRIES THAT HAVE HIGHER 5284 04:00:19,292 --> 04:00:23,597 INCIDENTS DUE TO CONFLICTS OR 5285 04:00:23,597 --> 04:00:28,034 OTHER ENVIRONMENTAL REASONS. 5286 04:00:28,034 --> 04:00:28,702 AS PART OF THE ALZHEIMER'S 5287 04:00:28,702 --> 04:00:30,036 RESEARCH PROGRAM WE'RE ALLOWED 5288 04:00:30,036 --> 04:00:32,139 TO FUND INVESTIGATORS IN THOSE 5289 04:00:32,139 --> 04:00:33,340 COUNTRIES AND COLLABORATING WITH 5290 04:00:33,340 --> 04:00:35,308 SOME OF THOSE AND WE ACTUALLY DO 5291 04:00:35,308 --> 04:00:39,413 HAVE SEVERAL STUDIES RIGHT NOW 5292 04:00:39,413 --> 04:00:48,288 WHERE WE'RE LOOKING AT THE 5293 04:00:48,288 --> 04:00:49,356 FOLLOW-UP FROM POPULATIONS WHO 5294 04:00:49,356 --> 04:00:54,728 HAVE A HIGH LEVEL OF TRAUMATIC 5295 04:00:54,728 --> 04:00:56,663 BRAIN INJURIES EVEN COMPARED TO 5296 04:00:56,663 --> 04:01:00,667 THE UNITED STATES DUE TO 5297 04:01:00,667 --> 04:01:09,576 MILITARY SERVICE AND G 5298 04:01:09,576 --> 04:01:10,610 GEOPOLITICAL COMPLEX AND CAN ADD 5299 04:01:10,610 --> 04:01:14,014 THAT TO THE KNOWLEDGE BASE GOING 5300 04:01:14,014 --> 04:01:14,381 FORWARD. 5301 04:01:14,381 --> 04:01:20,854 >> HOPEFULLY THE FOGARTY CENTER 5302 04:01:20,854 --> 04:01:22,589 WILL CONTINUE TO EXIST. 5303 04:01:22,589 --> 04:01:25,158 >> I BELIEVE THAT CONCLUDES OUR 5304 04:01:25,158 --> 04:01:25,358 TIME. 5305 04:01:25,358 --> 04:01:27,260 >> WE'LL SKIP THE SCHEDULED 5306 04:01:27,260 --> 04:01:28,628 BREAK AND KEEP GOING WITH THE 5307 04:01:28,628 --> 04:01:32,332 LAST SESSION OF THE DAY IF THAT 5308 04:01:32,332 --> 04:01:36,937 WORKS FOR EVERYBODY. 5309 04:01:36,937 --> 04:01:38,705 WE CAN TAKE A MINUTE WHILE OUR 5310 04:01:38,705 --> 04:01:40,674 TEAM BRINGS UP THE SLIDES AND 5311 04:01:40,674 --> 04:01:43,443 SESSION 4 SPEAKERS, PLEASE GET 5312 04:01:43,443 --> 04:01:48,648 READY TO PRESENT. 5313 04:01:48,648 --> 04:01:58,825 THANK YOU. 5314 04:02:22,148 --> 04:02:23,416 >> ALL RIGHT. 5315 04:02:23,416 --> 04:02:26,653 THANK YOU FOR TUNING INTO OUR 5316 04:02:26,653 --> 04:02:34,227 SESSION LATE AND I'M FROM 5317 04:02:34,227 --> 04:02:37,297 BRIGHAM AND WOMEN'S HOSPITAL AND 5318 04:02:37,297 --> 04:02:41,101 LATE WAS NAMED IN 2019 DEFINED 5319 04:02:41,101 --> 04:02:48,675 BY THE IMMIGRAAGGREGATION IN A 5320 04:02:48,675 --> 04:02:59,219 ENTER SERVICE AND IT WAS FOUND 5321 04:02:59,619 --> 04:03:05,158 IN THE FRONTAL GYRUS AND THE 5322 04:03:05,158 --> 04:03:07,327 CLINICAL SYNDROME IS A COGNITIVE 5323 04:03:07,327 --> 04:03:10,063 DECLINE. 5324 04:03:10,063 --> 04:03:20,507 WHY DO WE CARE ABOUT LATE? 5325 04:03:20,907 --> 04:03:24,177 IT'S SENIOR AND PATHOLOGICAL 5326 04:03:24,177 --> 04:03:29,616 SENSE SO IT'S AN IMPACTFUL 5327 04:03:29,616 --> 04:03:31,518 PATHOLOGY THE THIRD TYPE OF 5328 04:03:31,518 --> 04:03:33,753 DEMENTIA PRESENTATION AND 5329 04:03:33,753 --> 04:03:36,523 FOLLOWS ALZHEIMER'S DISEASE AND 5330 04:03:36,523 --> 04:03:39,426 VASCULAR IMPAIRMENT TO ATTRIBUTE 5331 04:03:39,426 --> 04:03:49,903 TO THE RISK IN OLDER ADULTS. 5332 04:04:04,217 --> 04:04:08,655 ONE IN EVERY FIVE WITH TAU 5333 04:04:08,655 --> 04:04:10,690 PATHOLOGY HAVE A PURE FORM OF 5334 04:04:10,690 --> 04:04:15,061 LATE NC CAN BE FOUND IN OVER AGE 5335 04:04:15,061 --> 04:04:18,365 75 WITH SOLE PROGRESSION BUT 5336 04:04:18,365 --> 04:04:21,334 PRETTY MUCH FROM CLINICAL 5337 04:04:21,334 --> 04:04:22,235 PRACTICE STANDPOINT IT'S 5338 04:04:22,235 --> 04:04:26,039 DIFFICULT TO DISTINGUISH FROM 5339 04:04:26,039 --> 04:04:26,706 ALZHEIMER'S DISEASE AND YOU HAVE 5340 04:04:26,706 --> 04:04:31,945 TO RELY ON BIOMARKERS TO 5341 04:04:31,945 --> 04:04:33,647 DISTINGUISH AND THE BIGGER 5342 04:04:33,647 --> 04:04:38,151 IMPLICATIONS COME FROM THE MIX 5343 04:04:38,151 --> 04:04:38,752 PATHOLOGY AND ALZHEIMER'S 5344 04:04:38,752 --> 04:04:41,087 DISEASE AND LATE LIKES TO 5345 04:04:41,087 --> 04:04:41,354 COMMINGLE. 5346 04:04:41,354 --> 04:04:45,492 MORE THAN HALF CASES WITH AD 5347 04:04:45,492 --> 04:04:50,130 PATHOLOGY HAVE LATE NC AND THEY 5348 04:04:50,130 --> 04:04:52,098 HAPPEN IN THE BACKGROUND OF 5349 04:04:52,098 --> 04:04:52,732 ALZHEIMER'S DISEASE AND THIS 5350 04:04:52,732 --> 04:04:54,634 COMBINED PATHOLOGY IS NOT ONLY 5351 04:04:54,634 --> 04:04:57,771 THE MOST COMMON BUT THE MOST 5352 04:04:57,771 --> 04:05:03,376 PROGRESSIVE AND SHOWS RAPID V 5353 04:05:03,376 --> 04:05:04,778 VOLUME LOSS AND HAS A GREAT 5354 04:05:04,778 --> 04:05:07,414 PUBLIC HEALTH IMPACT AND 5355 04:05:07,414 --> 04:05:12,652 ESPECIALLY PROBATIC IN 5356 04:05:12,652 --> 04:05:14,020 ANTI-AMYLOID ANTIBODIES BECAUSE 5357 04:05:14,020 --> 04:05:17,190 IT CAN BE A MAJOR CONFOUNDER OF 5358 04:05:17,190 --> 04:05:18,625 RESPONSE AND THE CLINICAL COURSE 5359 04:05:18,625 --> 04:05:19,426 IN THE SETTING OF COMBINED 5360 04:05:19,426 --> 04:05:25,965 PATHOLOGY. 5361 04:05:25,965 --> 04:05:28,068 LAST BUT NOT LEAST, THE PUBLIC 5362 04:05:28,068 --> 04:05:29,035 HEALTH IMPACT ASSOCIATED WITH 5363 04:05:29,035 --> 04:05:31,404 LATE IS ONLY EXPECTED TO 5364 04:05:31,404 --> 04:05:34,107 INCREASE OVER TIME. 5365 04:05:34,107 --> 04:05:35,809 IT'S PREDOMINANTLY FOUND IN THE 5366 04:05:35,809 --> 04:05:38,645 OLDEST OLD POPULATION AND THE 5367 04:05:38,645 --> 04:05:42,248 RAPIDLY EXPANDING SEGMENT AND 5368 04:05:42,248 --> 04:05:44,484 OVER 80 AND 90 THE IMPACT IS 5369 04:05:44,484 --> 04:05:46,553 GREATER THAN ALZHEIMER'S DISEASE 5370 04:05:46,553 --> 04:05:50,256 ITSELF AS SHOWN BY THE 90 PLUS 5371 04:05:50,256 --> 04:05:51,624 STUDY FROM THE UNITED STATES AND 5372 04:05:51,624 --> 04:05:57,497 THE STUDY FROM FINLAND. 5373 04:05:57,497 --> 04:05:59,833 GIVEN THE SIGNIFICANCE THE 5374 04:05:59,833 --> 04:06:01,735 SUBCOMMITTEE WAS ESTABLISHED IN 5375 04:06:01,735 --> 04:06:05,371 2019 AND MADE RECOMMENDATIONS IN 5376 04:06:05,371 --> 04:06:08,708 2022 AND GOALS WE SET WERE 5377 04:06:08,708 --> 04:06:09,709 SUMMARIZED HONING THE DEFINITION 5378 04:06:09,709 --> 04:06:12,612 OF LATE AND HOW TO BETTER 5379 04:06:12,612 --> 04:06:13,513 DIAGNOSIS THIS IN VIVO AND LOU 5380 04:06:13,513 --> 04:06:15,048 TO STUDY MECHANISMS OF LATE 5381 04:06:15,048 --> 04:06:18,384 PATHOGENESIS. 5382 04:06:18,384 --> 04:06:20,286 I'M GLAD TO REPORT THERE'S BEEN 5383 04:06:20,286 --> 04:06:20,920 SIGNIFICANT PROGRESS IN THE PAST 5384 04:06:20,920 --> 04:06:29,129 THREE YEARS. 5385 04:06:29,129 --> 04:06:30,163 WE NOW HAVE INITIAL CLINICAL 5386 04:06:30,163 --> 04:06:31,564 CRITERIA TO USE IN THE CLINIC. 5387 04:06:31,564 --> 04:06:34,134 FOR EXAMPLE, THIS IS THE OUTLINE 5388 04:06:34,134 --> 04:06:38,505 OF THE CLINICAL KROO CRITERIA TO 5389 04:06:38,505 --> 04:06:41,941 DEFINE AS A PRIMARY DIAGNOSIS. 5390 04:06:41,941 --> 04:06:43,409 IF SOMEONE PRESENTS WITH 5391 04:06:43,409 --> 04:06:45,612 COGNITIVE DECLINE WITH OTHER 5392 04:06:45,612 --> 04:06:50,884 DOMAINS RELATIVELY PRESERVES AND 5393 04:06:50,884 --> 04:06:52,719 HIPPOCAMPAL ATROPHY AND 5394 04:06:52,719 --> 04:06:55,488 BIOMARKERS THAT CASE IS 5395 04:06:55,488 --> 04:06:58,992 DIAGNOSED AS PROBABLE LATE MEANS 5396 04:06:58,992 --> 04:07:00,160 LATE NEUROLOGICAL CHANGES ARE 5397 04:07:00,160 --> 04:07:03,530 LIKELY THE PRIMARY DRIVER OF THE 5398 04:07:03,530 --> 04:07:04,664 CLASSIFICATION. 5399 04:07:04,664 --> 04:07:08,768 IF THEY HAVE A POSITIVE A BETA 5400 04:07:08,768 --> 04:07:10,236 BIOMARKER WE CHECK TAU 5401 04:07:10,236 --> 04:07:12,338 BIOMARKERS IN THE MEDIAL 5402 04:07:12,338 --> 04:07:14,107 TEMPORAL LOBE AND IF IT'S 5403 04:07:14,107 --> 04:07:16,776 NEGATIVE IT CAN BE DIAGNOSED AS 5404 04:07:16,776 --> 04:07:19,312 POSSIBLE AND THERE'S MRI AND PET 5405 04:07:19,312 --> 04:07:22,849 PATTERNS ASSOCIATED WITH THE 5406 04:07:22,849 --> 04:07:24,651 PATHOLOGICAL CHANGE. 5407 04:07:24,651 --> 04:07:29,556 HOWEVER, THERE'S STILL REMAINING 5408 04:07:29,556 --> 04:07:40,099 GAPS AND ONE BIG LIMITATION IS 5409 04:07:40,733 --> 04:07:46,472 CLINICAL DATA SETS FOR OUR 5410 04:07:46,472 --> 04:07:48,875 ABILITY TO PERFORM TARGET 5411 04:07:48,875 --> 04:07:59,185 DISCOVERY EFFORTS. 5412 04:08:00,186 --> 04:08:02,088 WE HAVE A NEUROPATHOLOGY 5413 04:08:02,088 --> 04:08:03,323 CRITERIA FOR LATE CHANGE AND 5414 04:08:03,323 --> 04:08:07,160 DETAILS HOW TO DEFINE IT FOR 5415 04:08:07,160 --> 04:08:09,562 EACH STAGE ALSO BETTER WAYS TO 5416 04:08:09,562 --> 04:08:15,335 DISTINGUISH IT FROM OTHER TDP 5417 04:08:15,335 --> 04:08:25,845 AGGREGATION DISORDERS AND ALS. 5418 04:08:29,215 --> 04:08:31,417 CLARIFYING THE RELATIONSHIP WITH 5419 04:08:31,417 --> 04:08:33,386 THE HIPPOCAMPUS IS CLOSELY 5420 04:08:33,386 --> 04:08:36,656 RELATED HISTOLOGICAL FINDING 5421 04:08:36,656 --> 04:08:43,696 NEEDS MORE WORK. 5422 04:08:43,696 --> 04:08:45,899 THERE'S BEEN PROGRESS IN 5423 04:08:45,899 --> 04:08:46,432 MECHANISTIC STUDIES. 5424 04:08:46,432 --> 04:08:49,402 THE GENOME WIDE STUDY HAS BEEN 5425 04:08:49,402 --> 04:08:51,104 PERFORMED AND CONFIRMED 5426 04:08:51,104 --> 04:08:52,238 PREVIOUSLY IDENTIFIED GENETIC 5427 04:08:52,238 --> 04:08:56,209 RISK FACTORS SUCH AS APOE 4 AND 5428 04:08:56,209 --> 04:08:58,645 VARIANTS AS WELL AS GRANULIN 5429 04:08:58,645 --> 04:08:59,712 VARIANT AND OTHER CANDIDATE 5430 04:08:59,712 --> 04:09:01,014 MARKERS THAT CAN BE FOLLOWED UP 5431 04:09:01,014 --> 04:09:11,391 IN THE FUTURE STUDIES. 5432 04:09:11,824 --> 04:09:19,365 AND SPLICING EVENTS COMPARED TO 5433 04:09:19,365 --> 04:09:29,876 OTHER OPATHTIES AND THEY NEED 5434 04:09:32,378 --> 04:09:32,979 MORE WORK. 5435 04:09:32,979 --> 04:09:36,816 BASED ON THE GAPS AND OTHERS, 5436 04:09:36,816 --> 04:09:41,721 OUR SUBCOMMITTEE HAS A DRAFT FOR 5437 04:09:41,721 --> 04:09:45,024 RECOMMENDATIONS AND THESE WERE 5438 04:09:45,024 --> 04:09:46,893 PRESENTED AND I'LL TOUCH ON 5439 04:09:46,893 --> 04:09:48,027 RECOMMENDATION ONE BECAUSE TWO 5440 04:09:48,027 --> 04:09:49,462 TO FOUR WILL BE COVERED BY MY 5441 04:09:49,462 --> 04:09:50,763 COLLEAGUES FOLLOWING THIS 5442 04:09:50,763 --> 04:09:51,264 PRESENTATION. 5443 04:09:51,264 --> 04:09:54,467 SO RECOMMENDATION ONE IS TO 5444 04:09:54,467 --> 04:09:57,670 DEVELOP AND EXPAND THE PHENOTYPE 5445 04:09:57,670 --> 04:10:00,206 COHORTS WITH CHARACTERIZATION 5446 04:10:00,206 --> 04:10:01,941 INCLUDING POSTMORTEM DATA WITH 5447 04:10:01,941 --> 04:10:03,776 THE GOAL TO UNCOVER UNIQUE 5448 04:10:03,776 --> 04:10:06,879 FEATURES OF LATE VERSUS OTHER 5449 04:10:06,879 --> 04:10:07,513 PATHOLOGY TO INFORM DIAGNOSIS 5450 04:10:07,513 --> 04:10:11,517 AND THERAPIES. 5451 04:10:11,517 --> 04:10:13,653 AND ALSO INFORM HOW TREATMENT 5452 04:10:13,653 --> 04:10:16,322 AFFECTS LATE NC AND SO ON. 5453 04:10:16,322 --> 04:10:18,257 FINALLY, IT'S CRITICALLY 5454 04:10:18,257 --> 04:10:19,058 IMPORTANT TO SUPPORT 5455 04:10:19,058 --> 04:10:20,860 INFRASTRUCTURE FOR CROSS-TALK 5456 04:10:20,860 --> 04:10:24,664 BETWEEN THE FIELDS WITH ALS 5457 04:10:24,664 --> 04:10:28,334 FIELDS THAT STUDY PATHOLOGIES 5458 04:10:28,334 --> 04:10:30,570 AND ENHANCE THE FOR ALL THE 5459 04:10:30,570 --> 04:10:30,837 DISORDERS. 5460 04:10:30,837 --> 04:10:34,207 AND EXPANDING AWARENESS IN THE 5461 04:10:34,207 --> 04:10:37,443 PUBLIC CLINICIANS AND OTHER 5462 04:10:37,443 --> 04:10:39,178 STAKEHOLDERS ARE IMPORTANT FOR 5463 04:10:39,178 --> 04:10:40,113 THE COMMON UNDER STUDIED 5464 04:10:40,113 --> 04:10:40,513 DISORDER. 5465 04:10:40,513 --> 04:10:41,447 THIS IS ALL I HAVE. 5466 04:10:41,447 --> 04:10:43,449 THANK YOU FOR YOUR ATTENTION. 5467 04:10:43,449 --> 04:10:48,654 I'LL TURN IT OVER TO THE NEXT 5468 04:10:48,654 --> 04:10:59,032 SPEAKER, KONSTANTINOS. 5469 04:11:08,474 --> 04:11:10,643 >> I HAVE NOTHING TO DISCLOSE. 5470 04:11:10,643 --> 04:11:12,678 THE SECOND RECOMMENDATION IS TO 5471 04:11:12,678 --> 04:11:18,284 AND VALIDATE IN VIVO MODIFIERS 5472 04:11:18,284 --> 04:11:20,086 AND RISK CLASSIFIER FOR LATENCY 5473 04:11:20,086 --> 04:11:23,956 AND THEY MUST HAVE GOOD 5474 04:11:23,956 --> 04:11:27,293 PERFORMANCE AS WELL AS IN 5475 04:11:27,293 --> 04:11:28,661 PERSONS WITH LATE LIFE DEMENTIA 5476 04:11:28,661 --> 04:11:35,468 SYNDROMES. 5477 04:11:35,468 --> 04:11:38,104 DIAGNOSIS IS ONLY VIABLE IN 5478 04:11:38,104 --> 04:11:39,639 AUTOPSY AND IT'S A MAJOR STEP 5479 04:11:39,639 --> 04:11:42,008 FORWARD IN TERMS OF LATE 5480 04:11:42,008 --> 04:11:42,341 DETECTION. 5481 04:11:42,341 --> 04:11:43,443 HOWEVER, WITHOUT THE MARKER 5482 04:11:43,443 --> 04:11:44,143 WE'RE LIMITED. 5483 04:11:44,143 --> 04:11:47,580 THEREFORE THERE'S AN URGENT NEED 5484 04:11:47,580 --> 04:11:48,648 FOR MOLECULARLY SPECIFIC 5485 04:11:48,648 --> 04:11:52,652 MARKERS, CLASSIFIERS AND RISK 5486 04:11:52,652 --> 04:11:56,155 PROIFIER FOR LATE TO ALLOW 5487 04:11:56,155 --> 04:11:57,523 PARTICIPANT SELECTION OF LATE 5488 04:11:57,523 --> 04:12:00,460 AND ABRB BECAUSE LATE IS OFTEN 5489 04:12:00,460 --> 04:12:04,097 MIXED WITH OTHER 5490 04:12:04,097 --> 04:12:04,831 NEUROPATHOLOGIES. 5491 04:12:04,831 --> 04:12:08,668 THEREFORE SUPPORT DRUG DISCOVERY 5492 04:12:08,668 --> 04:12:11,437 AND TREATMENT AND HAVING ACCESS 5493 04:12:11,437 --> 04:12:13,406 TO ACCURATE MARKERS WILL ENHANCE 5494 04:12:13,406 --> 04:12:23,883 ALL OTHER RESEARCH ON LATE. 5495 04:12:25,518 --> 04:12:28,654 WE KNOW LATE IS RELATED TO 5496 04:12:28,654 --> 04:12:30,089 MEMORY LOSS AND DEFICIT AND MORE 5497 04:12:30,089 --> 04:12:31,657 COMMON IN INDIVIDUALS OLDER THAN 5498 04:12:31,657 --> 04:12:33,559 75 YEARS OF AGE. 5499 04:12:33,559 --> 04:12:35,661 WE ALSO KNOW THERE ARE A NUMBER 5500 04:12:35,661 --> 04:12:41,534 OF GENES LINKED TO LATENCY. 5501 04:12:41,534 --> 04:12:43,503 HOWEVER WE NEED TO REFINE OUR 5502 04:12:43,503 --> 04:12:45,204 UNDERSTANDING OF THE COGNITIVE, 5503 04:12:45,204 --> 04:12:46,906 BEHAVIORAL AND GENETIC FEATURES 5504 04:12:46,906 --> 04:12:48,674 ASSOCIATED WITH LATENCY. 5505 04:12:48,674 --> 04:12:51,611 BY DOING THAT WE MAY IMPROVE 5506 04:12:51,611 --> 04:12:52,812 DETECTION OF LATE AND IF WE HAVE 5507 04:12:52,812 --> 04:12:55,982 A MARKER OF LATE, IT MAY HELP US 5508 04:12:55,982 --> 04:12:57,917 UNDERSTAND BETTER THE COGNITIVE 5509 04:12:57,917 --> 04:12:59,919 BEHAVIOR AND GOOD MORNING 5510 04:12:59,919 --> 04:13:01,420 FEATURES OF LATE. 5511 04:13:04,257 --> 04:13:08,327 SO, THIS IS A TWO-WAY STREET. 5512 04:13:08,327 --> 04:13:11,964 BY COMBINING IN VIVO OR EX VIVO 5513 04:13:11,964 --> 04:13:16,202 MRI WE'VE BEEN ABLE TO SHOW 5514 04:13:16,202 --> 04:13:19,438 LATENCY ASSOCIATED WITH THE 5515 04:13:19,438 --> 04:13:22,975 TEMPORAL LOBES AND OTHER LOBES 5516 04:13:22,975 --> 04:13:25,845 AND INSULA AND WE HAVE SHOWED 5517 04:13:25,845 --> 04:13:34,987 LATENCY HAS A STRONGER IMPACT ON 5518 04:13:34,987 --> 04:13:36,656 THE HIPPOCAMPUS THAN 5519 04:13:36,656 --> 04:13:46,866 ALZHEIMER'S. 5520 04:13:48,034 --> 04:13:50,303 WE'VE BEEN ABLE TO MAP THE 5521 04:13:50,303 --> 04:13:52,305 PATTERN OF OUR ABNORMALITIES 5522 04:13:52,305 --> 04:13:55,074 ASSOCIATED WITH LATENCY AND TO 5523 04:13:55,074 --> 04:13:56,909 DEMONSTRATE THE MAIN CONNECTIONS 5524 04:13:56,909 --> 04:14:00,112 IN THE BRAIN THAT ARE IMPLICATED 5525 04:14:00,112 --> 04:14:03,950 HERE ARE TEMPORAL CONNECTIONS, 5526 04:14:03,950 --> 04:14:05,384 TEMPORAL BASAL GANGLION 5527 04:14:05,384 --> 04:14:06,185 CONNECTIONS. 5528 04:14:06,185 --> 04:14:07,286 IN ADDITION, WE'VE BEEN ABLE TO 5529 04:14:07,286 --> 04:14:12,658 SHOW THE PROGRESSION OF THE 5530 04:14:12,658 --> 04:14:15,828 ABNORMALITIES IS FOLLOWING THE 5531 04:14:15,828 --> 04:14:24,670 PROGRESSION OF LATENCY. 5532 04:14:24,670 --> 04:14:27,707 ALSO WE HAVE PATHOLOGY MAPPED 5533 04:14:27,707 --> 04:14:29,108 PATTERN OF ABNORMALITIES IN THE 5534 04:14:29,108 --> 04:14:39,619 BRAIN ASSOCIATED WITH LATENCY. 5535 04:14:41,554 --> 04:14:43,789 ADDITIONALLY, BY COMBINING EX 5536 04:14:43,789 --> 04:14:46,492 VIVO MRI PATHOLOGY WE HAVE DEM 5537 04:14:46,492 --> 04:14:54,133 VATE D -- DEMONSTRATED LATENCY 5538 04:14:54,133 --> 04:14:54,800 FOLLOWS THE SPREAD CONSISTENT 5539 04:14:54,800 --> 04:14:58,070 WITH THE SPREAD OF THE PATTERN. 5540 04:14:58,070 --> 04:15:00,573 OVER THE LAST FEW SLIDES I HOPE 5541 04:15:00,573 --> 04:15:02,508 IT BECOMES CLEAR THAT MRI IS 5542 04:15:02,508 --> 04:15:04,343 SENSITIVE TO THE BRAIN 5543 04:15:04,343 --> 04:15:07,513 ABNORMALITIES ASSOCIATED WITH 5544 04:15:07,513 --> 04:15:10,383 LATE NC AND FUTURE STUDIES COULD 5545 04:15:10,383 --> 04:15:13,753 USE THESE AND OTHER FEATURES TO 5546 04:15:13,753 --> 04:15:16,656 TRAIN MRI BASED CLASSIFIERS OF 5547 04:15:16,656 --> 04:15:25,898 LATENCY. 5548 04:15:25,898 --> 04:15:27,733 USING PET STUDIES HAVE SHOWN 5549 04:15:27,733 --> 04:15:31,437 LATENCY IS ASSOCIATED WITH MORE 5550 04:15:31,437 --> 04:15:32,672 PRONOUNCED HYPERMETABOLISM IN 5551 04:15:32,672 --> 04:15:38,077 THE MEDIAL TEMPORAL LOBE AND THE 5552 04:15:38,077 --> 04:15:41,113 PATTERN IS TRUE FOR ALZHEIMER'S. 5553 04:15:41,113 --> 04:15:44,684 THEREFORE THE STUDY HAS 5554 04:15:44,684 --> 04:15:45,718 SUGGESTED 5555 04:15:45,718 --> 04:15:50,222 SUGGESTED IT MAY BE A MARKER FOR 5556 04:15:50,222 --> 04:15:51,157 LATENCY. 5557 04:15:51,157 --> 04:15:53,125 FURTHER WORK IS NEEDED TO TEST 5558 04:15:53,125 --> 04:16:01,534 THE CLASSIFIERS OF LATENCY. 5559 04:16:01,534 --> 04:16:04,670 AND THERE'S FEATURES AND 5560 04:16:04,670 --> 04:16:06,772 ADDITIONAL FEATURES AND FOR NOW 5561 04:16:06,772 --> 04:16:10,710 WE NEED TO TEST THE CLINICAL 5562 04:16:10,710 --> 04:16:13,546 CRITERIA USING LONGITUDINAL 5563 04:16:13,546 --> 04:16:16,682 OBSERVATIONS AND NEUROIMAGING 5564 04:16:16,682 --> 04:16:17,950 MARKERS AND NEUROPATHOLOGY. 5565 04:16:17,950 --> 04:16:21,053 IN THE FUTURE WE NEED TO UPDATE 5566 04:16:21,053 --> 04:16:24,423 THE CRITERIA BASED ON 5567 04:16:24,423 --> 04:16:34,867 DEVELOPMENTS IN THE FIELD. 5568 04:16:35,634 --> 04:16:40,673 AND HIGHER LEVELS OF TDP43 IN 5569 04:16:40,673 --> 04:16:43,576 THE PLASMA DERIVED EXTRA 5570 04:16:43,576 --> 04:16:45,878 CELLULAR VESICLES WITH THOSE 5571 04:16:45,878 --> 04:16:54,987 WITH TDP AND IN ADDITION LOSS OF 5572 04:16:54,987 --> 04:16:58,791 TDP43 AND PROTEINOPATHY IS 5573 04:16:58,791 --> 04:17:02,928 LINKED TO THE EXPRESSION OF THE 5574 04:17:02,928 --> 04:17:04,630 AND RECENT STUDIES SUGGESTED THE 5575 04:17:04,630 --> 04:17:08,667 PLASMA OR CSF HAS POTENTIAL AS A 5576 04:17:08,667 --> 04:17:09,068 MARKER FOR LATE. 5577 04:17:09,068 --> 04:17:12,772 ADDITIONAL WORK IS NEEDED TO 5578 04:17:12,772 --> 04:17:14,340 DEVELOP AND TEST BIOFLUID 5579 04:17:14,340 --> 04:17:17,309 MARKERS OF LATENCY. 5580 04:17:17,309 --> 04:17:19,578 ALSO EXCITING FINDINGS COME FROM 5581 04:17:19,578 --> 04:17:24,650 THE FIELD OF PET MARKERS OF 5582 04:17:24,650 --> 04:17:26,919 TDP43 WHERE RELATIVELY RECENTLY 5583 04:17:26,919 --> 04:17:30,856 NEW PET LIGAND HAS SHOWN 5584 04:17:30,856 --> 04:17:35,494 PERFORMS PERFORMANCE IN THE 5585 04:17:35,494 --> 04:17:38,531 SAMPLES AND IN ANIMAL TESTS. 5586 04:17:38,531 --> 04:17:41,801 AS FAR AS I KNOW THIS IS 5587 04:17:41,801 --> 04:17:48,507 CURRENTLY BEING TESTED IN HUME 5588 04:17:48,507 --> 04:17:49,742 CANS HAVE AND ADDITIONAL WORK IS 5589 04:17:49,742 --> 04:17:56,649 NEEDED TO TEST LATENCY. 5590 04:17:56,649 --> 04:17:58,984 IN CONCLUSION THERE'S AN URGENT 5591 04:17:58,984 --> 04:18:00,886 NEED FOR MARKERS OR CLASSIFIERS 5592 04:18:00,886 --> 04:18:05,624 THAT SHOW GOOD DISCRIMINATION OF 5593 04:18:05,624 --> 04:18:08,227 PATHOPHYSIOLOGY AND COULD BE 5594 04:18:08,227 --> 04:18:12,665 NEUROIMAGING OR BIO FLUID OR IN 5595 04:18:12,665 --> 04:18:14,600 COMBINATION. 5596 04:18:14,600 --> 04:18:18,971 IN ORDER TO ACCOMPLISH THE ABOVE 5597 04:18:18,971 --> 04:18:21,073 AWAY NEED COHORTS TO JOIN 5598 04:18:21,073 --> 04:18:24,176 MARKERS WITH DATA AND PATHOLOGY 5599 04:18:24,176 --> 04:18:25,211 AND EX VIVO MRI. 5600 04:18:25,211 --> 04:18:27,112 IN ADDITION WE NEED TO REFINE 5601 04:18:27,112 --> 04:18:28,280 OUR UNDERSTANDING OF THE 5602 04:18:28,280 --> 04:18:30,249 COGNITIVE AND GENETIC FEATURES 5603 04:18:30,249 --> 04:18:32,852 ASSOCIATED WITH LATENCY AND WE 5604 04:18:32,852 --> 04:18:36,021 ALSO NEED TO TEST THE CLINICAL 5605 04:18:36,021 --> 04:18:37,957 CRITERIA AND UPDATE THIS 5606 04:18:37,957 --> 04:18:39,291 CRITERIA IN THE FUTURE DEPENDING 5607 04:18:39,291 --> 04:18:40,459 ON NEW DEVELOPMENTS IN THE 5608 04:18:40,459 --> 04:18:40,659 FIELD. 5609 04:18:40,659 --> 04:18:50,836 THANK YOU. 5610 04:18:56,408 --> 04:18:56,675 >> THANK YOU. 5611 04:18:56,675 --> 04:18:58,277 I'LL CONTINUE LOOKING AT THE 5612 04:18:58,277 --> 04:18:58,777 CAUSES AND THERAPEUTIC 5613 04:18:58,777 --> 04:19:08,654 OPPORTUNITIES. 5614 04:19:08,654 --> 04:19:10,990 AND LOOK AT CAUSES AND THROUGH 5615 04:19:10,990 --> 04:19:12,658 HUMAN STUDIES AND ENVIRONMENTAL 5616 04:19:12,658 --> 04:19:15,094 MODELS AND AGING AND 5617 04:19:15,094 --> 04:19:18,697 PATHOLOGICAL AND MOLECULAR AND 5618 04:19:18,697 --> 04:19:20,065 STRUCTURAL PATHOLOGIES WITH THE 5619 04:19:20,065 --> 04:19:24,670 FOCUS ON DEVELOPING AND TESTING 5620 04:19:24,670 --> 04:19:30,843 TARGETS FOR THERAPEUTICS. 5621 04:19:30,843 --> 04:19:33,045 THE FIRST ASPECT IS DESIGN AND 5622 04:19:33,045 --> 04:19:35,481 DEVELOP MODELS OF LATE NC. 5623 04:19:35,481 --> 04:19:38,584 IN MANY SLIDES I'M USING 5624 04:19:38,584 --> 04:19:40,386 EXAMPLES FROM OTHER ALZHEIMER'S 5625 04:19:40,386 --> 04:19:41,787 DISEASE RELATES DEMENTIAS 5626 04:19:41,787 --> 04:19:45,624 BECAUSE IT'S THE MODELS LACKING 5627 04:19:45,624 --> 04:19:47,993 IN LATE NC SPECIFIC MODELS. 5628 04:19:47,993 --> 04:19:51,697 SO HUMANS SEEM TO HAVE THIS 5629 04:19:51,697 --> 04:19:52,665 UNIQUE SUSCEPTIBILITY TO LATE NC 5630 04:19:52,665 --> 04:19:55,968 HOWEVER, WE DON'T HAVE GOOD 5631 04:19:55,968 --> 04:19:59,238 MODELS OF LATE NC IN MISSING OR 5632 04:19:59,238 --> 04:20:01,307 OTHER ANIMAL MODELS. 5633 04:20:01,307 --> 04:20:03,309 WHAT WE'RE LOOKING FOR IS 5634 04:20:03,309 --> 04:20:04,677 DEVELOP MODELS OF DYSFUNCTION 5635 04:20:04,677 --> 04:20:07,980 NOT JUST IN ALS THAT ALREADY 5636 04:20:07,980 --> 04:20:13,419 EXIST BUT WHERE WITH HAVE 5637 04:20:13,419 --> 04:20:16,155 PHENOTYPES IN THE MODELS. 5638 04:20:16,155 --> 04:20:17,856 ADDITIONALLY IN THE MODELS WED 5639 04:20:17,856 --> 04:20:21,627 LIKE TO CHARACTERIZE GLIAL AND 5640 04:20:21,627 --> 04:20:23,629 NEURAL INFLAMMATORY 5641 04:20:23,629 --> 04:20:28,133 CONTRIBUTIONS TO TDP ADENOPATHY 5642 04:20:28,133 --> 04:20:32,237 AND THERE'S MOLE MODELS OF THIS 5643 04:20:32,237 --> 04:20:34,573 IN ALS AND WOULD LIKE TO 5644 04:20:34,573 --> 04:20:43,382 TRANSLATE THE MODELS IN LATE. 5645 04:20:43,382 --> 04:20:48,587 WE'RE ALSO TRYING TO LOOK AT 5646 04:20:48,587 --> 04:20:50,022 DEVELOPING CELLULAR NOLDES AND 5647 04:20:50,022 --> 04:20:55,594 HOW TO MODEL LATE NC PATHOLOGY 5648 04:20:55,594 --> 04:21:06,005 IN INDUCED PLURIMOW -- 5649 04:21:12,211 --> 04:21:15,180 PLURIPOTENT MODELS AND IN THE 5650 04:21:15,180 --> 04:21:17,249 CULTURE SYSTEM OR USED PATIENT 5651 04:21:17,249 --> 04:21:20,352 DERIVED HAVE LATE WILL THOSE 5652 04:21:20,352 --> 04:21:22,087 REPRESENT ANY PHENOTYPES SEEN IN 5653 04:21:22,087 --> 04:21:22,955 LATE AS SUGGESTED BY SOME FOR 5654 04:21:22,955 --> 04:21:33,032 ALS. 5655 04:21:35,868 --> 04:21:36,769 AND OBSERVE WHAT'S BEEN IN 5656 04:21:36,769 --> 04:21:39,505 PATIENT GLIAL CELLS AND THIS IS 5657 04:21:39,505 --> 04:21:41,707 IMPORTANT TO DEFINE THE LOSS OF 5658 04:21:41,707 --> 04:21:49,314 FUNCTION AND GAIN OF CYTOPLASMIC 5659 04:21:49,314 --> 04:21:51,517 CYTOPLASMIC FUNCTION AND WHAT 5660 04:21:51,517 --> 04:21:53,752 CAN WE DO TO MODEL LATE NC IN 5661 04:21:53,752 --> 04:21:55,821 CELLS TO STUDY THIS CONDITION IN 5662 04:21:55,821 --> 04:22:02,194 DETAIL. 5663 04:22:02,194 --> 04:22:05,264 AND TO GO FURTHER TOWARDS 5664 04:22:05,264 --> 04:22:05,864 STRUCTURALLY SPECIFIC AND IN 5665 04:22:05,864 --> 04:22:08,033 VITRO MODELS WHERE WE NEED TO 5666 04:22:08,033 --> 04:22:09,835 UNDERSTAND LATE SPECIFIC ULTRA 5667 04:22:09,835 --> 04:22:12,171 STRUCTURE OF TDP43 ITSELF WHEN 5668 04:22:12,171 --> 04:22:16,175 IT'S DEPOSITED AND POTENTIAL 5669 04:22:16,175 --> 04:22:17,776 CO-DEPOSITED PROTEINS IN 5670 04:22:17,776 --> 04:22:22,081 ORGANISM MODELS AND BIO CHEMICAL 5671 04:22:22,081 --> 04:22:23,615 MODELS AND WOULD LIKE TO 5672 04:22:23,615 --> 04:22:27,986 UNDERSTAND THE STRUCTURE OF 5673 04:22:27,986 --> 04:22:32,357 TDP43 AND HAS BEEN DISCOVERED BY 5674 04:22:32,357 --> 04:22:34,359 WORK IN A LAB IN THE U.K. AND 5675 04:22:34,359 --> 04:22:37,796 WHAT IS THE MOLECULAR STRUCTURE 5676 04:22:37,796 --> 04:22:43,202 IN LATE? 5677 04:22:43,202 --> 04:22:44,670 THAT BRINGS UP AN IMPORTANT 5678 04:22:44,670 --> 04:22:45,170 QUESTION. 5679 04:22:45,170 --> 04:22:46,572 ANOTHER ASPECT OF OUR 5680 04:22:46,572 --> 04:22:49,108 RECOMMENDATION IS TO LOOK AT THE 5681 04:22:49,108 --> 04:22:51,443 TDP43 STRUCTURE DIRECTLY AND TRY 5682 04:22:51,443 --> 04:22:53,145 TO UNDERSTAND THE PRIMARY 5683 04:22:53,145 --> 04:22:55,214 STRUCTURAL AND POST 5684 04:22:55,214 --> 04:22:55,881 TRANSLATIONAL MODIFICATIONS AND 5685 04:22:55,881 --> 04:22:57,916 THE IMPORTANCE OF COMPOSITION OF 5686 04:22:57,916 --> 04:23:00,219 CO-DEPOSITED PROTEINS. 5687 04:23:00,219 --> 04:23:04,656 FOR EXAMPLE IN FTLD IS THAT THE 5688 04:23:04,656 --> 04:23:13,465 CASE IN THE LATE AND WE DO SEE 5689 04:23:13,465 --> 04:23:18,604 OTHER PROTEINS CODEPOSITED IN 5690 04:23:18,604 --> 04:23:19,605 LATE. 5691 04:23:19,605 --> 04:23:23,408 IMPORTANTLY WE'D LIKE TO 5692 04:23:23,408 --> 04:23:25,477 UNDERSTAND HOW THE PATHOLOGICAL 5693 04:23:25,477 --> 04:23:27,813 INCLUSION FORMED. 5694 04:23:27,813 --> 04:23:30,282 WHAT IS THE ASSEMBLIES FORMED 5695 04:23:30,282 --> 04:23:34,186 AND CAN WE PREVENT THE FORMATION 5696 04:23:34,186 --> 04:23:40,993 OF THESE ABHORRENT STRUCTURES 5697 04:23:40,993 --> 04:23:43,362 AND WHAT DOES IT LOOK LIKE 5698 04:23:43,362 --> 04:23:45,063 INITIALLY BEFORE DEPOSITION AND 5699 04:23:45,063 --> 04:23:46,665 EITHER OF THESE THINGS, THESE 5700 04:23:46,665 --> 04:23:48,967 TOXIC OR POTENTIALLY TOXIC 5701 04:23:48,967 --> 04:23:51,370 INCLUSIONS THAT ARE STRUCTURES 5702 04:23:51,370 --> 04:23:54,006 ON THE LEFT OR THESE FUNCTIONAL 5703 04:23:54,006 --> 04:23:58,844 ASSEMBLIES OF THE SAME REGION OF 5704 04:23:58,844 --> 04:24:01,647 TDP43 IN THE CENTER MAY BE 5705 04:24:01,647 --> 04:24:02,147 TARGETS FOR THERAPEUTIC 5706 04:24:02,147 --> 04:24:11,557 MODULATION. 5707 04:24:11,557 --> 04:24:13,625 THERE'S CO-DEPOSITED PROTEINS 5708 04:24:13,625 --> 04:24:20,098 AND WHAT ARE THESE MOLECULAR 5709 04:24:20,098 --> 04:24:26,371 CONSEQUENCE OF THE PATHOLOGIES? 5710 04:24:26,371 --> 04:24:28,640 WE ALSO NEED TO DESIGN MODELS 5711 04:24:28,640 --> 04:24:32,644 THAT INCORPORATE NOT JUST TDP43 5712 04:24:32,644 --> 04:24:36,315 PATHOLOGY BUT CO-PATHOLOGIES AND 5713 04:24:36,315 --> 04:24:40,652 IF THERE'S SYNUCLEIN PATHOLOGIES 5714 04:24:40,652 --> 04:24:43,622 AND ORGANISM MODELS AND IF IT 5715 04:24:43,622 --> 04:24:44,890 COEXISTS WITH OTHER PATHOLOGIES 5716 04:24:44,890 --> 04:24:48,660 WE FEED TO UNDERSTAND HOW THEY 5717 04:24:48,660 --> 04:24:50,362 ARE INTERACT. 5718 04:24:50,362 --> 04:24:52,464 WE NEED TO STUDY THE MECHANISTIC 5719 04:24:52,464 --> 04:24:55,133 BASIS OF DISEASE INITIATION. 5720 04:24:55,133 --> 04:24:56,501 HOW DO THE DISEASE START AND HOW 5721 04:24:56,501 --> 04:24:58,937 ARE NEURONS LOST? 5722 04:24:58,937 --> 04:25:01,406 HOW ARE BRAIN REGIONS TARGETED 5723 04:25:01,406 --> 04:25:05,544 FOR DEGENERATION SPECIFIED IN 5724 04:25:05,544 --> 04:25:07,646 LATE AGE RELATED PROGRESSION IS 5725 04:25:07,646 --> 04:25:08,080 PRIMARILY IMPORTANT. 5726 04:25:08,080 --> 04:25:09,615 WE NEED TO UNDERSTAND HOW THAT 5727 04:25:09,615 --> 04:25:09,982 WORKS. 5728 04:25:09,982 --> 04:25:11,783 CAN WE DEVELOP MODELS THAT 5729 04:25:11,783 --> 04:25:14,052 INCORPORATE AGE-RELATED 5730 04:25:14,052 --> 04:25:17,756 PROGRESSION AND HOW IS 5731 04:25:17,756 --> 04:25:18,624 PROGRESSION ACROSS THE BRAIN 5732 04:25:18,624 --> 04:25:19,691 AREAS INCLUDED. 5733 04:25:19,691 --> 04:25:23,028 WE ALSO NEED TO DISCOVER GENETIC 5734 04:25:23,028 --> 04:25:23,896 CAUSATIVE FACTORS FOR LATE. 5735 04:25:23,896 --> 04:25:26,832 SO SEVERAL HAVE BEEN SHOWN AS OR 5736 04:25:26,832 --> 04:25:27,466 DISCOVERED AS SHOWN HERE. 5737 04:25:27,466 --> 04:25:29,768 WILL WE BE ABLE TO CONFIRM THESE 5738 04:25:29,768 --> 04:25:33,772 BY REPLICATION AND WILL WE FIND 5739 04:25:33,772 --> 04:25:37,075 NEW GENES CAUSATIVE FOR LATE AND 5740 04:25:37,075 --> 04:25:40,646 OTHER TDP43 PROTEINOPATHIES BE 5741 04:25:40,646 --> 04:25:46,285 CAUSATIVE FOR LATE. 5742 04:25:46,285 --> 04:25:52,991 WE NEED TO STUDY THE LATE 5743 04:25:52,991 --> 04:25:53,525 PATHOPHYSIOLOGY. 5744 04:25:53,525 --> 04:25:54,893 WHAT ARE THE SPLICING CHANGES WE 5745 04:25:54,893 --> 04:25:55,327 HEARD ABOUT. 5746 04:25:55,327 --> 04:25:58,997 THERE WAS A RECENT STUDY SHOWN 5747 04:25:58,997 --> 04:26:03,168 JUST LAST WEEK THAT THE AMYLOID 5748 04:26:03,168 --> 04:26:05,504 PRECURSOR PROTEIN IS PROCESSED 5749 04:26:05,504 --> 04:26:07,973 IN THE CYTOPLASMIC GAIN OF 5750 04:26:07,973 --> 04:26:10,075 FUNCTION AND IT WOULD BE 5751 04:26:10,075 --> 04:26:11,276 INTERESTING TO STUDY WHAT ARE 5752 04:26:11,276 --> 04:26:12,678 THE CORRECTIBLE CHANGES THAT 5753 04:26:12,678 --> 04:26:18,450 COULD BE TARGETED. 5754 04:26:18,450 --> 04:26:19,484 >> WE'RE AT TIME. 5755 04:26:19,484 --> 04:26:22,788 >> WE NEED TO GEAR UP TO STUDY 5756 04:26:22,788 --> 04:26:24,656 THESE IN MODELS. 5757 04:26:24,656 --> 04:26:28,860 WE NEED TO TAKE ACTION ON THESE 5758 04:26:28,860 --> 04:26:30,262 POTENTIAL THERAPEUTIC 5759 04:26:30,262 --> 04:26:36,635 TECHNOLOGIES BECAUSE WE KNOW IN' 5760 04:26:36,635 --> 04:26:42,975 SENSE ALOGOES CAN BE SUCCESSFUL 5761 04:26:42,975 --> 04:26:45,777 TREATMENT AND WE'VE HAD 5762 04:26:45,777 --> 04:26:48,647 THERAPEUTICS IN SPINAL ATROPHY 5763 04:26:48,647 --> 04:26:52,284 AND WE NEED MODELS TO TEST THESE 5764 04:26:52,284 --> 04:26:57,055 THERAPIES IN TDP43. 5765 04:26:57,055 --> 04:27:00,659 I'LL LEAVE IT THERE. 5766 04:27:00,659 --> 04:27:03,829 THANK YOU VERY MUCH. 5767 04:27:03,829 --> 04:27:06,832 >> WE'LL GO STRAIGHT TO 5768 04:27:06,832 --> 04:27:07,666 DR. NELSON'S TALK. 5769 04:27:07,666 --> 04:27:09,868 >> THANK YOU TO THE ORGANIZERS. 5770 04:27:09,868 --> 04:27:10,669 I APPRECIATE IT. 5771 04:27:10,669 --> 04:27:12,871 IT'S WONDERFUL TO BE PART OF 5772 04:27:12,871 --> 04:27:13,572 THIS EXCELLENT SUMMIT. 5773 04:27:13,572 --> 04:27:16,641 I HAVE NOTHING TO DISCLOSE. 5774 04:27:16,641 --> 04:27:22,280 I'M TALKING TODAY ABOUT 5775 04:27:22,280 --> 04:27:24,649 RECOMMENDATIONS RELATED TO 5776 04:27:24,649 --> 04:27:27,219 HIPPOCAMPAL SCLEROSIS OF AGING 5777 04:27:27,219 --> 04:27:29,087 AND I CAN SAY BASICALLY IT 5778 04:27:29,087 --> 04:27:30,655 BREAKS DOWN TO TWO THINGS. 5779 04:27:30,655 --> 04:27:32,657 NUMBER ONE, IMPROVING OUR 5780 04:27:32,657 --> 04:27:34,493 CLASSIFICATION AND DIAGNOSIS AND 5781 04:27:34,493 --> 04:27:36,161 TWO, IMPROVING OUR UNDERSTANDING 5782 04:27:36,161 --> 04:27:37,929 OF THE MECHANISM TO PROVIDE 5783 04:27:37,929 --> 04:27:45,837 TARGETS FOR FUTURE THERAPIES. 5784 04:27:45,837 --> 04:27:49,574 SO WHAT IS HIPPOCAMPUS SCLEROSIS 5785 04:27:49,574 --> 04:27:52,210 IT'S LOSS IN THE MEDIAL TEMPORAL 5786 04:27:52,210 --> 04:27:53,545 GLOBE AND THE NORMAL HIPPOCAMPUS 5787 04:27:53,545 --> 04:27:55,647 ON THE RIGHT. 5788 04:27:55,647 --> 04:27:59,551 YOU SEE THE SHRIVALLED 5789 04:27:59,551 --> 04:28:04,423 HIPPOCAMPUS WITH CELL LOSS AND 5790 04:28:04,423 --> 04:28:05,557 GLIOSIS. 5791 04:28:05,557 --> 04:28:07,626 THIS IS A COMMON PATHOLOGY. 5792 04:28:07,626 --> 04:28:09,394 10% LIFE TIME RISK AND AFFECTED 5793 04:28:09,394 --> 04:28:11,596 25% OF PEOPLE WITH DEMENTIA. 5794 04:28:11,596 --> 04:28:14,066 IT DOESN'T AFFECT PEOPLE EQUALLY 5795 04:28:14,066 --> 04:28:17,836 ALONG THE HUMAN AGING SPECTRUM. 5796 04:28:17,836 --> 04:28:28,313 HERE YOU SEE THE NEXT SLIDE. 5797 04:28:36,721 --> 04:28:41,626 GO BACK TO THE LAST SLIDE. 5798 04:28:41,626 --> 04:28:43,728 THIS SHOWS YOU ON THE X AXIS IS 5799 04:28:43,728 --> 04:28:49,134 AGE AND THE Y AXIS IS PATHOLOGY. 5800 04:28:49,134 --> 04:28:55,140 THE BLACK TRACE SMOOTHED BY 5801 04:28:55,140 --> 04:28:58,210 MEASURES IS ALZHEIMER'S DISEASE 5802 04:28:58,210 --> 04:28:59,444 AND HIPPOCAMPAL SCLEROSIS 5803 04:28:59,444 --> 04:29:04,049 PATHOLOGY IS THE RED TRACE AND 5804 04:29:04,049 --> 04:29:07,819 UNLIKE ALZHEIMER'S HIPPOCAMPAL 5805 04:29:07,819 --> 04:29:12,657 SCLEROSIS THAT FOCUSES MOSTLY ON 5806 04:29:12,657 --> 04:29:15,861 THE OLDEST OLD. 5807 04:29:15,861 --> 04:29:19,097 HOWEVER IT'S A SOMEWHAT 5808 04:29:19,097 --> 04:29:20,732 CONFUSING TEAM AND OFTEN LINKED 5809 04:29:20,732 --> 04:29:21,900 TO EPILEPSY. 5810 04:29:21,900 --> 04:29:23,368 TO DESCRIBE THIS WE DID A SURVEY 5811 04:29:23,368 --> 04:29:25,303 AT THE UNIVERSITY OF KENTUCKY 5812 04:29:25,303 --> 04:29:28,840 WHICH IS A UNIVERSITY THAT HAS A 5813 04:29:28,840 --> 04:29:33,778 VERY GOOD FAMILIARITY WITH THE 5814 04:29:33,778 --> 04:29:34,045 CONDITION. 5815 04:29:34,045 --> 04:29:39,684 WE DID THE SURVEY TWICE. 5816 04:29:39,684 --> 04:29:43,622 IN 2018 AND 2015 TO SEE WHAT WAS 5817 04:29:43,622 --> 04:29:48,660 THE EFFECT OF THE NEW 5818 04:29:48,660 --> 04:29:55,834 NOMENCLATURE AND THIS WAS PART 5819 04:29:55,834 --> 04:30:03,575 OF THE PART -- PART PASSION -- 5820 04:30:03,575 --> 04:30:05,710 PARTICIPATION AND 80% OF THE 5821 04:30:05,710 --> 04:30:08,813 RESPONDENTS SAID IT WAS AN 5822 04:30:08,813 --> 04:30:09,948 EPILEPSY DISORDER TERM AND WE 5823 04:30:09,948 --> 04:30:12,684 THOUGHT IT WOULD BE BETTER IN 5824 04:30:12,684 --> 04:30:13,818 2025. 5825 04:30:13,818 --> 04:30:15,687 BUT REGRETTABLY IT'S NOT THE 5826 04:30:15,687 --> 04:30:15,954 CASE. 5827 04:30:15,954 --> 04:30:18,957 IT'S STILL NOT REALLY THE TERM 5828 04:30:18,957 --> 04:30:22,127 THAT PEOPLE THINK OF WHEN THEY 5829 04:30:22,127 --> 04:30:24,729 THINK OF HIPPOCAMPAL SCLEROSIS 5830 04:30:24,729 --> 04:30:29,534 THEY THINK OF A DIFFERENT 5831 04:30:29,534 --> 04:30:32,370 PATHOMECHANISM OF HIPPOCAMPUS 5832 04:30:32,370 --> 04:30:33,205 SCLEROSIS DIFFERENT FROM THAT 5833 04:30:33,205 --> 04:30:36,675 WHICH AFFECTS DEMENTIA AND IT'S 5834 04:30:36,675 --> 04:30:39,844 MORE COMMON. 5835 04:30:39,844 --> 04:30:47,852 SO WE CONCLUDE THAT WE NEED MORE 5836 04:30:47,852 --> 04:30:52,657 TERMINOLOGY FOR HIPPOCAMPAL 5837 04:30:52,657 --> 04:30:55,794 SCLEROSIS OF AGING. 5838 04:30:55,794 --> 04:30:56,695 THE GOLD STANDARD DEFINITION 5839 04:30:56,695 --> 04:31:01,800 WHICH IS A PATHOLOGY NEEDS TO BE 5840 04:31:01,800 --> 04:31:02,534 STANDARDIZED AND OPTIMIZED IN A 5841 04:31:02,534 --> 04:31:07,606 DATA-DRIVEN WAY. 5842 04:31:07,606 --> 04:31:10,475 SO IT'S STRONGLY ASSOCIATED WITH 5843 04:31:10,475 --> 04:31:15,680 LATE NC BUT NOT SYNONYMOUS. 5844 04:31:15,680 --> 04:31:18,550 ON THE RIGHT YOU SEE THE VEN 5845 04:31:18,550 --> 04:31:22,687 DIAGRAM THAT SHOWS A MEANINGFUL 5846 04:31:22,687 --> 04:31:25,590 CONCEPTUALIZATION OF HIPPOCAMPAL 5847 04:31:25,590 --> 04:31:28,226 SCLEROSIS OF AGING IS THE MORE 5848 04:31:28,226 --> 04:31:30,128 SEVERE SUB TYPE OF LATE NC AND 5849 04:31:30,128 --> 04:31:33,531 THAT COULD BE CONNECTED TO THE 5850 04:31:33,531 --> 04:31:35,000 PATHOGENIC PROGRESSION THAT'S 5851 04:31:35,000 --> 04:31:37,869 HYPOTHESIZED FROM NO LATE TO 5852 04:31:37,869 --> 04:31:40,639 LATE WITH NO PATHOLOGY AND THE 5853 04:31:40,639 --> 04:31:42,741 ORANGE ARROW GOES TO LATE WITH 5854 04:31:42,741 --> 04:31:47,312 HS MAYBE THE QUESTION IS YOU SEE 5855 04:31:47,312 --> 04:31:52,017 THE STRONG HIPPOCAMPUS AND IT'S 5856 04:31:52,017 --> 04:31:53,218 LOGICAL YOU THINK IT WOULD BE 5857 04:31:53,218 --> 04:31:55,353 BAD FOR YOU BUT WE AND OTHERS 5858 04:31:55,353 --> 04:31:56,588 AROUND THE WORLD FOUND THIS 5859 04:31:56,588 --> 04:32:04,029 PROGRESSION FROM LATE TO LATE 5860 04:32:04,029 --> 04:32:06,398 NC-HS IS ASSOCIATED WITH WORSE 5861 04:32:06,398 --> 04:32:11,870 PROGRESSION BUT NOT SEIZURES OR 5862 04:32:11,870 --> 04:32:15,173 AD PATHOLOGY BUT LATE NC STAGES. 5863 04:32:15,173 --> 04:32:17,609 SO THE WAY YOU DETECT IT IN THE 5864 04:32:17,609 --> 04:32:19,778 CLINIC IS BY MRI AT THIS POINT. 5865 04:32:19,778 --> 04:32:22,681 THIS IS MY PICTURE OF AN 5866 04:32:22,681 --> 04:32:25,884 INDIVIDUAL WHO PASSED AT THE AGE 5867 04:32:25,884 --> 04:32:30,488 OF 93 AND HAS THESE NICE 5868 04:32:30,488 --> 04:32:34,993 POSTMORTEM IMAGES TAKEN BUT THAT 5869 04:32:34,993 --> 04:32:37,829 IS TO UNDER SCORE SOME THINGS 5870 04:32:37,829 --> 04:32:40,665 THAT WAS SAID THE HIPPOCAMPAL 5871 04:32:40,665 --> 04:32:42,534 ATROPHY AND SCLEROSIS IS WORSE 5872 04:32:42,534 --> 04:32:44,669 THAN WHAT YOU SEE WITH 5873 04:32:44,669 --> 04:32:46,104 ALZHEIMER'S DISEASE. 5874 04:32:46,104 --> 04:32:48,573 WE NEED SPECIFIC CUT POINTS AND 5875 04:32:48,573 --> 04:32:52,644 UNDERSTAND THE MECHANISM FOR HOW 5876 04:32:52,644 --> 04:32:55,146 THIS DEGENERATION OCCURS. 5877 04:32:55,146 --> 04:32:58,650 AND IT'S NOT JUST ABOUT LATE NC. 5878 04:32:58,650 --> 04:33:01,886 SO WHY DO SOME SUBSET OF PEOPLE 5879 04:33:01,886 --> 04:33:04,522 WHO HAVE LATE AND NOT OTHERS 5880 04:33:04,522 --> 04:33:06,958 DEVELOP HS AND THESE MECHANISTIC 5881 04:33:06,958 --> 04:33:12,497 INSIGHTS CAN BE TRANSLATABLE. 5882 04:33:12,497 --> 04:33:14,699 SO LABS AROUND THE WORLD THAT 5883 04:33:14,699 --> 04:33:18,336 FOUND EVIDENCE OF POSSIBLE 5884 04:33:18,336 --> 04:33:25,877 PATHOGENETIC MECHANISMS 5885 04:33:25,877 --> 04:33:29,748 VASCULAROPATHY AND MORE 5886 04:33:29,748 --> 04:33:30,749 INFLAMMATION AND WE NEED MORE 5887 04:33:30,749 --> 04:33:33,885 SYSTEMS TO GENERATE TRANSLATABLE 5888 04:33:33,885 --> 04:33:34,819 MECHANISMS. 5889 04:33:34,819 --> 04:33:36,154 THESE MECHANISTIC INSIGHTS GIVES 5890 04:33:36,154 --> 04:33:36,688 US STRATEGIES. 5891 04:33:36,688 --> 04:33:40,325 I WANT TO GIVE AN EXAMPLE OF A 5892 04:33:40,325 --> 04:33:41,860 SPECIFIC CLINICAL RESEARCH ARM 5893 04:33:41,860 --> 04:33:45,764 THAT HAS LED DIRECTLY TO A 5894 04:33:45,764 --> 04:33:48,533 CLINICAL TRIAL AIMED AT 5895 04:33:48,533 --> 04:33:50,368 PREVENTING DEMENTIA IN OLD 5896 04:33:50,368 --> 04:33:54,239 PEOPLE AND HAS NOTHING TO DO 5897 04:33:54,239 --> 04:34:01,780 WITH ALZHEIMER'S AND DAVID FARDO 5898 04:34:01,780 --> 04:34:05,917 GENERATED THIS AND THERE WAS A 5899 04:34:05,917 --> 04:34:07,685 DRUG THAT A COLLEAGUE OF MINE AT 5900 04:34:07,685 --> 04:34:09,754 THE UNIVERSITY OF KENTUCKY ARE 5901 04:34:09,754 --> 04:34:11,122 USING IN THE FIRST CLINICAL 5902 04:34:11,122 --> 04:34:13,625 TRIAL FOR LATE HS. 5903 04:34:13,625 --> 04:34:15,627 AND TO GIVE YOU AN IDEA OVER ALL 5904 04:34:15,627 --> 04:34:23,768 IDEA OF WHAT IS GOING ON THERE, 5905 04:34:23,768 --> 04:34:31,075 IT'S THERE'S A NEW STANDARD OF A 5906 04:34:31,075 --> 04:34:33,578 PATIENT WHO'S COGNITION IS 5907 04:34:33,578 --> 04:34:36,381 SLIPPING AND THERE'S A BIOMARKER 5908 04:34:36,381 --> 04:34:36,681 MANIFESTING. 5909 04:34:36,681 --> 04:34:43,988 AND IF THERE'S ABETA AMYLOIDOSIS 5910 04:34:43,988 --> 04:34:44,989 NOTICED BY BIOMARKER EVIDENCE 5911 04:34:44,989 --> 04:34:45,790 THERE'S HOPE. 5912 04:34:45,790 --> 04:34:56,334 IT'S NOT 100% PERFECT BUT NO -- 5913 04:34:56,868 --> 04:35:00,638 >> DR. NELSON, TIME IS UP. 5914 04:35:00,638 --> 04:35:08,079 >> I'M ALMOST DONE. 5915 04:35:08,079 --> 04:35:16,187 AND COHORTS COGNITIVE IMPAIRED 5916 04:35:16,187 --> 04:35:22,327 AND SOME HAVE THIS TYPE OF 5917 04:35:22,327 --> 04:35:24,496 AMYLOIDOSIS AND IF YOU HAVE THE 5918 04:35:24,496 --> 04:35:27,031 IMPAIRMENT AND IF YOU HAVE THIS 5919 04:35:27,031 --> 04:35:34,539 MRI PICTURE THEN HOPEFULLY WE 5920 04:35:34,539 --> 04:35:38,877 CAN DEVELOP NEW REMEDIES AND A 5921 04:35:38,877 --> 04:35:40,645 CLINICAL TRIAL SUBJECT TO 5922 04:35:40,645 --> 04:35:44,682 PERHAPS PREVENT FURTHER 5923 04:35:44,682 --> 04:35:46,251 DEGENERATION. 5924 04:35:46,251 --> 04:35:52,657 AND THANK YOU AND I'VE GOT IT. 5925 04:35:52,657 --> 04:36:03,034 >> THANK YOU SO MUCH. 5926 04:36:05,803 --> 04:36:08,072 >> SO WE'LL HAVE 15 MINUTES FOR 5927 04:36:08,072 --> 04:36:08,473 QUESTIONS. 5928 04:36:08,473 --> 04:36:09,507 >> THANK YOU TO THE COMMITTEE 5929 04:36:09,507 --> 04:36:12,644 AND THE WHOLE GROUP AND 5930 04:36:12,644 --> 04:36:14,946 OBVIOUSLY NINDS FOR SUPPORTING 5931 04:36:14,946 --> 04:36:15,146 THIS. 5932 04:36:15,146 --> 04:36:16,648 I'M CHAIRING THE SESSION. 5933 04:36:16,648 --> 04:36:22,186 I GUESS I DID WANT TO START FROM 5934 04:36:22,186 --> 04:36:23,488 ONE COMMENT FROM WITHIN OUR 5935 04:36:23,488 --> 04:36:34,098 PANEL AN INDIVIDUAL, DEIDRE AND 5936 04:36:34,098 --> 04:36:35,166 HER LIVED EXPERIENCE AND GIVE 5937 04:36:35,166 --> 04:36:36,668 HER AN OPPORTUNITY TO SAY A FEW 5938 04:36:36,668 --> 04:36:46,778 WORDS. 5939 04:36:49,647 --> 04:36:51,749 >> YES, MY PAST YEAR MY MOTHER 5940 04:36:51,749 --> 04:36:52,650 WAS DIAGNOSED LATE. 5941 04:36:52,650 --> 04:36:55,520 OUR JOURNEY TO LATE BEGAN WITH 5942 04:36:55,520 --> 04:36:59,757 THE DIAGNOSIS IN 2018 OF MILD 5943 04:36:59,757 --> 04:37:03,127 COGNITIVE IMPAIRMENT DUE TO 5944 04:37:03,127 --> 04:37:03,428 ALZHEIMER'S. 5945 04:37:03,428 --> 04:37:13,638 SHE WAS 81. 5946 04:37:22,914 --> 04:37:24,582 WE WERE BRACING FOR THE 5947 04:37:24,582 --> 04:37:26,618 PROGRESSION TO DEMENTIA AND 5948 04:37:26,618 --> 04:37:28,152 AFTER THE DIAGNOSIS OF MILD 5949 04:37:28,152 --> 04:37:31,089 COGNITIVE IMPAIRMENT SHE 5950 04:37:31,089 --> 04:37:32,657 REMAINED AT THAT LEVEL WITHOUT 5951 04:37:32,657 --> 04:37:34,592 FURTHER DEFICIT WHICH WAS 5952 04:37:34,592 --> 04:37:36,494 SURPRISING AND THEN WE WERE TOLD 5953 04:37:36,494 --> 04:37:40,164 SHE HAD LATE OR TDP43. 5954 04:37:40,164 --> 04:37:43,668 WE LEARNED IT WAS SLOWER MOVING 5955 04:37:43,668 --> 04:37:45,370 THAN ALZHEIMER'S AND WOULD 5956 04:37:45,370 --> 04:37:47,772 AFFECT HER ABILITY TO LEARN NEW 5957 04:37:47,772 --> 04:37:50,108 THINGS AND HAD A PET SCAN TO 5958 04:37:50,108 --> 04:37:52,677 CONFIRM NO AMYLOID PLAQUE AND 5959 04:37:52,677 --> 04:37:56,080 WERE TOLD HER CEREBRAL CORTEX 5960 04:37:56,080 --> 04:37:57,715 WAS INTACT. 5961 04:37:57,715 --> 04:38:00,284 IT'S THE FIRST TIME AS A FAMILY 5962 04:38:00,284 --> 04:38:02,954 WE FELT HOPE BECAUSE A DIFFICULT 5963 04:38:02,954 --> 04:38:04,656 PART FOR ME WAS TALKING TO MY 5964 04:38:04,656 --> 04:38:10,028 MOM AND EACH TIME WONDERING WILL 5965 04:38:10,028 --> 04:38:12,196 THIS BE THE LAST TIME SHE KNOWS 5966 04:38:12,196 --> 04:38:15,400 WHO I AM AND NOW WITH THE NEW 5967 04:38:15,400 --> 04:38:18,736 DIAGNOSIS IT'S EDUCATING ALL 5968 04:38:18,736 --> 04:38:23,841 THOSE WHO ASSIST HER TO THIS 5969 04:38:23,841 --> 04:38:28,546 CONDITION AND WE HAD A FAMILY 5970 04:38:28,546 --> 04:38:30,848 WITH HER 24/7 SO SHE WOULDN'T 5971 04:38:30,848 --> 04:38:32,116 GET LOST IN THE ENVIRONMENT AND 5972 04:38:32,116 --> 04:38:34,886 HAD TO EDUCATE ALL THE DOCTORS 5973 04:38:34,886 --> 04:38:35,620 AND NURSES ON THE DIAGNOSIS AND 5974 04:38:35,620 --> 04:38:38,056 WEREN'T AWARE OF LATE AND WERE 5975 04:38:38,056 --> 04:38:40,491 THANKFUL AND IT DOES MAKE A 5976 04:38:40,491 --> 04:38:41,893 DIFFERENCE IN THE CARE AND I 5977 04:38:41,893 --> 04:38:44,062 CAN'T STRESS ENOUGH TO GET THE 5978 04:38:44,062 --> 04:38:47,799 INFORMATION OUT TO FAMILIES TO 5979 04:38:47,799 --> 04:38:48,866 NAVIGATE LATE AND ASSIST HEALTH 5980 04:38:48,866 --> 04:38:51,069 CARE PROVIDERS AND THEIR 5981 04:38:51,069 --> 04:38:53,171 APPROACH TO THE PATIENTS AND I 5982 04:38:53,171 --> 04:38:54,739 KNOW THERE'S RECENT CRITERIA 5983 04:38:54,739 --> 04:38:56,641 ABOUT TO BE PUBLISHED WHICH IS 5984 04:38:56,641 --> 04:38:57,742 WONDERFUL AND HOPEFULLY THERE'LL 5985 04:38:57,742 --> 04:39:00,645 BE CARE GUIDELINES TAILORED TO 5986 04:39:00,645 --> 04:39:04,649 LATE BECAUSE RIGHT NOW AS A 5987 04:39:04,649 --> 04:39:09,854 FAMILY WE IS HAVE TO EDUCATE 5988 04:39:09,854 --> 04:39:11,656 THOSE AROUND US HOW BEST TO 5989 04:39:11,656 --> 04:39:13,725 SUPPORT MY MOTHER AND AT THE END 5990 04:39:13,725 --> 04:39:16,327 IT REALLY WAS A GAME CHANGER TO 5991 04:39:16,327 --> 04:39:18,463 FIND OUT HER ACTUAL DIAGNOSIS 5992 04:39:18,463 --> 04:39:20,298 AND IT'S HEARTENING TO KNOW 5993 04:39:20,298 --> 04:39:24,602 THERE'S TEAMS LIKE AT PENN 5994 04:39:24,602 --> 04:39:27,271 MEDICINE TO CARE ENOUGH TO 5995 04:39:27,271 --> 04:39:30,108 PROVIDE ANSWERS TO THOSE WHO 5996 04:39:30,108 --> 04:39:32,310 DON'T EXHIBIT THE TYPICAL 5997 04:39:32,310 --> 04:39:33,010 MANIFESTATIONS OF ALZHEIMER'S 5998 04:39:33,010 --> 04:39:34,779 AND GIVES PEOPLE A SENSE OF 5999 04:39:34,779 --> 04:39:36,781 WHAT'S GOING ON. 6000 04:39:36,781 --> 04:39:38,149 AGAIN, GETTING THE WORD OUT IS 6001 04:39:38,149 --> 04:39:38,883 EVERYTHING AND THANK YOU SO MUCH 6002 04:39:38,883 --> 04:39:40,651 AND THANK YOU FOR GIVING ME SOME 6003 04:39:40,651 --> 04:39:49,293 TIME TO SPEAK. 6004 04:39:49,293 --> 04:39:55,199 >> THANK YOU, DEIDRE, IN THE 6005 04:39:55,199 --> 04:40:00,004 ADDITION OF DIAGNOSIS THERE'S 6006 04:40:00,004 --> 04:40:03,174 DEMYSTIFYING THE CONDITION AND 6007 04:40:03,174 --> 04:40:08,179 THE ABILITY TO DESCRIBE LATE IS 6008 04:40:08,179 --> 04:40:18,556 CRITICALLY IMPORTANT. 6009 04:40:23,861 --> 04:40:27,265 >> I HAVE MANY QUESTIONS BUT IN 6010 04:40:27,265 --> 04:40:30,468 THE INTEREST OF TIME I HAVE ONE 6011 04:40:30,468 --> 04:40:32,570 FOR THE HIPPOCAMPAL SCLEROSIS 6012 04:40:32,570 --> 04:40:34,839 THE ELEPHANT IN THE ROOM AND 6013 04:40:34,839 --> 04:40:38,142 WHEN IT COMES TO THIS DIAGNOSIS 6014 04:40:38,142 --> 04:40:41,546 THERE'S A LOT OF INCONSISTENCY 6015 04:40:41,546 --> 04:40:42,480 LEADING TO AGREEMENT BETWEEN 6016 04:40:42,480 --> 04:40:44,182 DIFFERENT GROUPS. 6017 04:40:44,182 --> 04:40:46,884 I DON'T SEE A LOT OF EFFORT IN 6018 04:40:46,884 --> 04:40:49,153 TRYING TO UNIFY THE DIAGNOSIS OR 6019 04:40:49,153 --> 04:40:51,689 SET OF RECOMMENDATIONS TO HELP 6020 04:40:51,689 --> 04:40:54,392 US TALK THE SAME LANGUAGE WHEN 6021 04:40:54,392 --> 04:40:58,329 WE SAY HIPPOCAMPUS SCLEROSIS OF 6022 04:40:58,329 --> 04:40:59,597 AGING AND THE OTHER DOWN THE 6023 04:40:59,597 --> 04:41:01,265 LINE IS MOVING AWAY FROM A 6024 04:41:01,265 --> 04:41:04,635 BINARY DIAGNOSIS AND COMING UP 6025 04:41:04,635 --> 04:41:09,473 WITH AT LEAST AN ORGANAL 6026 04:41:09,473 --> 04:41:10,007 CRITERIA LIKE WITH OTHER 6027 04:41:10,007 --> 04:41:20,218 PATHOLOGIES. 6028 04:41:21,085 --> 04:41:23,187 >> YOUR POINT IS WELL TAKEN. 6029 04:41:23,187 --> 04:41:24,922 WE NEED BETTER CRITERIA FOR HOW 6030 04:41:24,922 --> 04:41:28,659 WE THRESHOLD OUR DIAGNOSES IN 6031 04:41:28,659 --> 04:41:32,663 THE PATHOLOGICAL AND STRUCTURAL 6032 04:41:32,663 --> 04:41:34,332 IMAGING CONTEXT. 6033 04:41:34,332 --> 04:41:36,400 WE NEED THAT AND ONE OF THE 6034 04:41:36,400 --> 04:41:39,337 STRONG RECOMMENDATIONS THAT WE 6035 04:41:39,337 --> 04:41:44,008 MADE IS THAT BOTH FOR IS THE 6036 04:41:44,008 --> 04:41:54,485 BIOMARKER OF OPATHY WE NEED 6037 04:41:56,921 --> 04:42:00,825 GROUPS TO COME TOGETHER AND MAKE 6038 04:42:00,825 --> 04:42:05,796 THE CALLS. 6039 04:42:05,796 --> 04:42:08,633 >> AND COME UP WITH HARMONIZED 6040 04:42:08,633 --> 04:42:14,138 PROTOCOLS WITH HOW PATHOLOGISTS 6041 04:42:14,138 --> 04:42:15,306 SPEAK ABOUT HIPPOCAMPAL 6042 04:42:15,306 --> 04:42:25,850 SCLEROSIS AND MOVE IT TO CLINIC. 6043 04:42:27,685 --> 04:42:31,756 >> I WANT TO RAISE UP WHEN IT 6044 04:42:31,756 --> 04:42:33,991 COMES TO ALZHEIMER'S 6045 04:42:33,991 --> 04:42:34,725 DISEASE-RELATED DIMENTIAS ARE 6046 04:42:34,725 --> 04:42:36,227 DIFFERENT THAN LATE NC EVEN TO 6047 04:42:36,227 --> 04:42:38,229 THIS DAY PEOPLE WILL THINK 6048 04:42:38,229 --> 04:42:39,931 THEY'RE BEING IMPACTED BY 6049 04:42:39,931 --> 04:42:40,598 ALZHEIMER'S DISEASE AND IN YEARS 6050 04:42:40,598 --> 04:42:44,235 PAST BEFORE ALL THE WORK YOU 6051 04:42:44,235 --> 04:42:47,471 GUYS HAVE DONE SO NEATLY HAS 6052 04:42:47,471 --> 04:42:49,407 SHOWN MORE WHAT THE DISEASE IS. 6053 04:42:49,407 --> 04:42:56,647 AND TO THAT END, TDP43 HAS BEEN 6054 04:42:56,647 --> 04:42:59,150 ON THE BACK FOOT AND HOW CAN WE 6055 04:42:59,150 --> 04:43:00,651 OVERCOME THE INJUSTICE OF THAT 6056 04:43:00,651 --> 04:43:02,420 VERY IMPORTANT THING AND 6057 04:43:02,420 --> 04:43:05,389 FAMILIES EVEN SAYING IT'S 6058 04:43:05,389 --> 04:43:08,259 ALZHEIMER'S DISEASE AND TALKING 6059 04:43:08,259 --> 04:43:12,029 TO PEOPLE BUILT AND NOT KNOWING 6060 04:43:12,029 --> 04:43:14,565 IT'S AMYLOID AND TAU IMPLICATED 6061 04:43:14,565 --> 04:43:18,202 AND THAT'S A BIG PICTURE 6062 04:43:18,202 --> 04:43:19,303 QUESTION AND THERE'S WORK 6063 04:43:19,303 --> 04:43:25,209 SHOWING TDP43 IS SHOWN 6064 04:43:25,209 --> 04:43:26,444 DYSFUNCTIONALLY IN OTHER BODY 6065 04:43:26,444 --> 04:43:28,079 PARTS AND THE GUT WHICH COULD BE 6066 04:43:28,079 --> 04:43:32,249 A WAY THAT IT'S TRANSMITTED I 6067 04:43:32,249 --> 04:43:32,650 GATHER. 6068 04:43:32,650 --> 04:43:35,686 SO, ARE YOU LOOKING AT THAT OR 6069 04:43:35,686 --> 04:43:36,320 ANY THOUGHTS ABOUT IT? 6070 04:43:36,320 --> 04:43:42,460 THANK YOU SO MUCH. 6071 04:43:42,460 --> 04:43:45,262 >> I'LL TAKE THE FIRST PART OF 6072 04:43:45,262 --> 04:43:47,999 OF THAT QUESTION AND TURN TO 6073 04:43:47,999 --> 04:43:50,267 OTHERS IF YOU WANT TO TALK MORE 6074 04:43:50,267 --> 04:43:53,270 ABOUT OUTSIDE THE BRAIN. 6075 04:43:53,270 --> 04:43:58,275 I THINK WE NOW KNOW ALZHEIMER'S 6076 04:43:58,275 --> 04:44:02,446 DISEASE HAS MULTIPLE PATHOLOGIES 6077 04:44:02,446 --> 04:44:04,415 AND THERE'S THE IMPORTANCE OF 6078 04:44:04,415 --> 04:44:06,684 UNDERSTANDING THE ROLE OF TDP 6079 04:44:06,684 --> 04:44:12,656 AND LATE WITHIN THE CONTEXT OF 6080 04:44:12,656 --> 04:44:15,192 ALZHEIMER'S DISEASE AND ABLE TO 6081 04:44:15,192 --> 04:44:17,495 IDENTIFY THE INDIVIDUALS WITH 6082 04:44:17,495 --> 04:44:19,463 ALZHEIMER'S DISEASE WHO HAVE THE 6083 04:44:19,463 --> 04:44:20,264 CO-PATHOLOGY BECAUSE IT'S ALMOST 6084 04:44:20,264 --> 04:44:22,500 CERTAIN THERE'S MECHANISTIC 6085 04:44:22,500 --> 04:44:25,469 DIFFERENCES THAT CAUSE ONE 6086 04:44:25,469 --> 04:44:31,108 INDIVIDUAL TO HAVE CON COMBINANT 6087 04:44:31,108 --> 04:44:34,011 TDB AND WHEN WE'RE ENGAGED WITH 6088 04:44:34,011 --> 04:44:34,612 THERAPEUTICS FOR ALZHEIMER'S 6089 04:44:34,612 --> 04:44:35,646 DISEASE WE'RE GOING TO BE 6090 04:44:35,646 --> 04:44:38,983 NEEDING TO FIGURE OUT WHO HAVE 6091 04:44:38,983 --> 04:44:43,521 THE CO-PATHOLOGIES AND HOW IT 6092 04:44:43,521 --> 04:44:47,024 AFFECTS OUTCOMES AND OF WHAT 6093 04:44:47,024 --> 04:44:48,359 OTHERS STRESSED AND WE NEED GOOD 6094 04:44:48,359 --> 04:44:52,663 BIOMARKERS TO TELL US MORE 6095 04:44:52,663 --> 04:44:56,300 DEFINITIVELY ABOUT THE PRESENCE 6096 04:44:56,300 --> 04:45:06,844 OF DETERMINING AND HAVING BETTER 6097 04:45:10,014 --> 04:45:11,348 BIOMARKERS IS IMPORTANT AND YOU 6098 04:45:11,348 --> 04:45:12,883 MENTIONED THE IMPORTANCE OF 6099 04:45:12,883 --> 04:45:13,651 EDUCATING THE COMMUNITY ABOUT 6100 04:45:13,651 --> 04:45:21,025 THAT AND A -- THERE'S STATEMENTS 6101 04:45:21,025 --> 04:45:23,227 OF MORE COMMUNITY OUTREACH IN 6102 04:45:23,227 --> 04:45:24,228 UNDERSTANDING THE CONDITION 6103 04:45:24,228 --> 04:45:27,898 WHICH IS KEY BECAUSE MANY 6104 04:45:27,898 --> 04:45:31,535 NEUROLOGISTS LET ALONE PRIMARY 6105 04:45:31,535 --> 04:45:33,237 CARE DOCTORS HAVE NEVER HEARD OF 6106 04:45:33,237 --> 04:45:34,672 THE DIAGNOSTIC ENTITY. 6107 04:45:34,672 --> 04:45:37,408 I DON'T KNOW IF ANYONE WANTS TO 6108 04:45:37,408 --> 04:45:39,777 COMMENT OUT SIDE THE BRAIN IN 6109 04:45:39,777 --> 04:45:50,321 TERMS OF TDP43 FUNCTION AT ALL. 6110 04:45:54,492 --> 04:45:55,793 NO TAKERS? 6111 04:45:55,793 --> 04:45:57,895 ONE THING WE STRESSED IN THE 6112 04:45:57,895 --> 04:45:58,629 RECOMMENDATIONS IS TO 6113 04:45:58,629 --> 04:45:59,897 COLLABORATE AND WORK WELL WITH 6114 04:45:59,897 --> 04:46:04,635 THE BROADER TDP43 COMMUNITY AND 6115 04:46:04,635 --> 04:46:07,404 ALS AND IF FTD WAS THERE'S LOTS 6116 04:46:07,404 --> 04:46:10,407 OF WISDOM FROM MANY YEARS OF 6117 04:46:10,407 --> 04:46:12,676 WORK THIS FIELD CAN GAIN FROM 6118 04:46:12,676 --> 04:46:13,477 AND CERTAINLY I THINK 6119 04:46:13,477 --> 04:46:18,182 COLLABORATION IS CRITICAL. 6120 04:46:18,182 --> 04:46:23,320 >> I HAVE TWO QUESTIONS ON THE 6121 04:46:23,320 --> 04:46:28,626 VIDEOCAST. 6122 04:46:28,626 --> 04:46:31,028 THEY'RE ABOUT DETECTING TDP43 IN 6123 04:46:31,028 --> 04:46:34,999 LATE AND IF YOU HAVE THE ABILITY 6124 04:46:34,999 --> 04:46:36,667 TO DISTINGUISH IT FROM 6125 04:46:36,667 --> 04:46:37,768 ALZHEIMER'S DISEASE. 6126 04:46:37,768 --> 04:46:40,404 WHAT IS THE IMPACT ON TREATMENTS 6127 04:46:40,404 --> 04:46:42,173 AND CLINICAL BIOMARKERS AND THE 6128 04:46:42,173 --> 04:46:44,708 OTHER IS A MORE TECHNICAL 6129 04:46:44,708 --> 04:46:48,646 QUESTION ABOUT WHAT IS NEEDED TO 6130 04:46:48,646 --> 04:46:51,815 DETECT TDP43 DEPOSITS. 6131 04:46:51,815 --> 04:46:56,287 DO WE NEED DEVELOPMENT OF 6132 04:46:56,287 --> 04:46:58,422 NON-AMINO HISTOCHEMISTRY METHODS 6133 04:46:58,422 --> 04:47:00,124 TO BE ADVANTAGEOUS TO DETECT OR 6134 04:47:00,124 --> 04:47:04,662 IS IT DIFFERENT SPECIES OF TDP43 6135 04:47:04,662 --> 04:47:08,332 BOTH ON THE TECHNICAL DETECTION 6136 04:47:08,332 --> 04:47:09,633 AND THE IMPACT. 6137 04:47:09,633 --> 04:47:12,670 >> THOSE ARE GREAT QUESTIONS. 6138 04:47:12,670 --> 04:47:18,075 I DON'T KNOW, KONSTATINOS DID 6139 04:47:18,075 --> 04:47:22,846 YOU WANT TO SAY A FEW WORDS? 6140 04:47:22,846 --> 04:47:25,549 >> WE KNOW LATE NC IS MIXED WITH 6141 04:47:25,549 --> 04:47:28,152 OTHER PATHOLOGIES COMMONLY. 6142 04:47:28,152 --> 04:47:30,721 THIS MEANS IF WE HAVE A MARKER 6143 04:47:30,721 --> 04:47:32,723 FOR LATE NC WE'RE NOT GOING TO 6144 04:47:32,723 --> 04:47:35,125 BE ONLY HELPING CLINICAL TRIALS 6145 04:47:35,125 --> 04:47:36,260 IN THE DIAGNOSIS OF LATE BUT 6146 04:47:36,260 --> 04:47:38,896 ALSO GOING TO BE HELPING 6147 04:47:38,896 --> 04:47:42,933 CLINICAL TRIALS IN TREATMENT FOR 6148 04:47:42,933 --> 04:47:44,301 OTHER PATHOLOGIES FOR THE SIMPLE 6149 04:47:44,301 --> 04:47:46,904 REASON IF YOU HAVE THE 6150 04:47:46,904 --> 04:47:49,840 SUCCESSFUL ALZHEIMER'S DRUG BUT 6151 04:47:49,840 --> 04:47:51,809 TESTING ON PEOPLE THAT HAVE 6152 04:47:51,809 --> 04:47:55,379 LATE, THESE PEOPLE MAY PROGRESS 6153 04:47:55,379 --> 04:47:58,515 AND HAVE DEMENTIA AT SOME POINT. 6154 04:47:58,515 --> 04:47:59,316 IT DOESN'T MEAN THE ALZHEIMER'S 6155 04:47:59,316 --> 04:48:00,184 DRUG DID NOT WORK. 6156 04:48:00,184 --> 04:48:03,320 IT'S VERY IMPORTANT TO BE ABLE 6157 04:48:03,320 --> 04:48:09,326 TO IDENTIFY NOT ONLY FOR 6158 04:48:09,326 --> 04:48:12,630 DIAGNOSING AND TREATING BUT 6159 04:48:12,630 --> 04:48:14,164 ATTACKING ADRD. 6160 04:48:14,164 --> 04:48:18,736 THEN THE SECOND QUESTION WAS YOU 6161 04:48:18,736 --> 04:48:20,204 SAID -- 6162 04:48:20,204 --> 04:48:23,307 >> MORE AROUND THE QUESTION 6163 04:48:23,307 --> 04:48:24,642 ABOUT DETECTION OF -- TECHNICAL 6164 04:48:24,642 --> 04:48:26,310 BARRIERS. 6165 04:48:26,310 --> 04:48:30,014 >> AT THIS POINT I THINK IT'S 6166 04:48:30,014 --> 04:48:31,382 WISE WE DO IT THIS WAY AND 6167 04:48:31,382 --> 04:48:36,654 ATTACK IT FROM ALL ASPECTS. 6168 04:48:36,654 --> 04:48:42,259 THERE BLOOD BASED MARKERS AND 6169 04:48:42,259 --> 04:48:51,769 TRACERS TO DETECT THE PATHOLOGY 6170 04:48:51,769 --> 04:48:54,305 AND SPECIFIC MARKERS AND EVERY 6171 04:48:54,305 --> 04:48:54,638 ASPECT. 6172 04:48:54,638 --> 04:48:56,307 I THINK THERE ARE VERY HOPEFUL 6173 04:48:56,307 --> 04:49:00,477 SIGNS FROM EACH ONE OF THEM EVEN 6174 04:49:00,477 --> 04:49:02,313 THE CLINICAL CRITERIA ALREADY 6175 04:49:02,313 --> 04:49:07,384 INCLUDES INFORMATION WITH KNEW 6176 04:49:07,384 --> 04:49:09,186 KNOWLEDGE GENERATED FROM THE 6177 04:49:09,186 --> 04:49:09,720 BIOMARKER POINT OF VIEW. 6178 04:49:09,720 --> 04:49:13,190 I FEEL THE CLINICAL CRITERIA 6179 04:49:13,190 --> 04:49:15,526 WILL ABSORB THE INFORMATION AND 6180 04:49:15,526 --> 04:49:16,660 INCORPORATE THEM. 6181 04:49:16,660 --> 04:49:20,297 I THINK WE'RE SEEING VERSION ONE 6182 04:49:20,297 --> 04:49:22,132 OF THE CLINICAL CRITERIA RIGHT 6183 04:49:22,132 --> 04:49:23,567 NOW WHICH IS A HUGE STEP FORWARD 6184 04:49:23,567 --> 04:49:25,269 BUT WE NEED TO GO TO VERSION 6185 04:49:25,269 --> 04:49:26,303 TWO. 6186 04:49:26,303 --> 04:49:34,244 >> A QUICK POINT. 6187 04:49:34,244 --> 04:49:37,014 THE POINTS MADE BY THE PATIENT'S 6188 04:49:37,014 --> 04:49:40,150 DAUGHTER WERE IMPORTANT TO ME 6189 04:49:40,150 --> 04:49:42,419 AND THIS PERVADES TO EVERYTHING 6190 04:49:42,419 --> 04:49:45,656 WE HEARD TODAY AND NOT JUST WITH 6191 04:49:45,656 --> 04:49:47,658 LATE OR AD BUT THE DEMENTIA 6192 04:49:47,658 --> 04:49:49,793 FIELD NEEDS TO LEARN FROM THE 6193 04:49:49,793 --> 04:49:52,629 CANCER FIELD SOME OF THE 6194 04:49:52,629 --> 04:49:54,164 CULTURAL ADVANCES THEY HAVE 6195 04:49:54,164 --> 04:50:00,637 ACHIEVED THAT HAVE BEEN 6196 04:50:00,637 --> 04:50:01,872 TRANSLATED TO SCIENTIFIC 6197 04:50:01,872 --> 04:50:04,241 ADVANCES AND NOT BE AFRAID OF 6198 04:50:04,241 --> 04:50:05,642 COMPLEXITY. 6199 04:50:05,642 --> 04:50:06,577 CANCER GRAPPLES WITH DEEP 6200 04:50:06,577 --> 04:50:07,544 COMPLEXITY AND HAS COME UP WITH 6201 04:50:07,544 --> 04:50:08,212 IT ON THE UPPER HAND IN MANY 6202 04:50:08,212 --> 04:50:10,214 WAYS. 6203 04:50:10,214 --> 04:50:12,649 WE HAVE BEEN VERY AVERSE TO IT 6204 04:50:12,649 --> 04:50:14,585 AND WE TEND TO DICHOTOMIZE 6205 04:50:14,585 --> 04:50:16,920 THINGS AS YES, NO, YES, NO. 6206 04:50:16,920 --> 04:50:20,391 IT'S NOT A YES, NO SITUATION. 6207 04:50:20,391 --> 04:50:28,665 THERE'S FACTORS AND GENETIC AND 6208 04:50:28,665 --> 04:50:29,133 ENVIRONMENTAL. 6209 04:50:29,133 --> 04:50:32,636 THE COMPLEXITY, NUMBER ONE, 6210 04:50:32,636 --> 04:50:35,072 NUMBER TWO, WE NEED TO GET TO 6211 04:50:35,072 --> 04:50:36,540 THEIR ASSESSMENTS. 6212 04:50:36,540 --> 04:50:37,341 THE BIOMARKERS WORK AND THERE 6213 04:50:37,341 --> 04:50:39,109 USED TO BE A CULTURE WHERE THERE 6214 04:50:39,109 --> 04:50:40,611 IS IN CANCER AND NOT CURRENTLY 6215 04:50:40,611 --> 04:50:42,346 IN DEMENTIA TREATMENT AND CARE. 6216 04:50:42,346 --> 04:50:44,882 AND WE NEED TO GET PEOPLE TO 6217 04:50:44,882 --> 04:50:46,383 KNOW WHAT TO SCREEN THEM FOR AND 6218 04:50:46,383 --> 04:50:48,318 WHAT THEY'RE AT RISK FOR AND TO 6219 04:50:48,318 --> 04:50:50,154 THEN GIVE THEM OPTIONS. 6220 04:50:50,154 --> 04:50:51,422 IT'S NOT TELLING THEM THEY HAVE 6221 04:50:51,422 --> 04:50:53,390 TO DO THIS OR THAT BUT PEOPLE 6222 04:50:53,390 --> 04:50:55,692 ARE SCARED OF DEMENTIA AS MUCH 6223 04:50:55,692 --> 04:50:59,029 AS THEY'RE SCARED AS CANCER AND 6224 04:50:59,029 --> 04:51:01,865 WE'VE ACTED AS THOUGH BEING 6225 04:51:01,865 --> 04:51:03,467 INTERVENTIONISTS ARE BAD AND 6226 04:51:03,467 --> 04:51:04,768 IT'S NOT IT'S GIVING PEOPLE 6227 04:51:04,768 --> 04:51:05,969 CHOICES AND DECISIONS ON THEIR 6228 04:51:05,969 --> 04:51:10,441 OWN AND THOSE ELEMENTS OF CANCER 6229 04:51:10,441 --> 04:51:15,412 CULTURE WE CAN LEARN A LOT FROM. 6230 04:51:15,412 --> 04:51:18,081 >> AND THERE'S A MORE PRECISION 6231 04:51:18,081 --> 04:51:19,416 MEDICINE APPROACH AND IN THE 6232 04:51:19,416 --> 04:51:22,419 CONTEXT OF ALZHEIMER'S BUT IN 6233 04:51:22,419 --> 04:51:24,655 THE CONTEXT OF OTHER 6234 04:51:24,655 --> 04:51:26,089 NEURODEGENERATIVE CONDITIONS IN 6235 04:51:26,089 --> 04:51:27,758 ITS OWN RIGHT. 6236 04:51:27,758 --> 04:51:30,227 DEVELOPING BIOMARKERS WILL HAVE 6237 04:51:30,227 --> 04:51:30,727 THAT IMPACT. 6238 04:51:30,727 --> 04:51:36,533 >> IF I CAN ADD TO THE ANSWER. 6239 04:51:36,533 --> 04:51:39,870 SPEAKING SPECIFICALLY ABOUT THE 6240 04:51:39,870 --> 04:51:42,372 TDP43 PATHOLOGY DETECTION WITHIN 6241 04:51:42,372 --> 04:51:44,508 THE LDP SPACE THERE'S MULTIPLE 6242 04:51:44,508 --> 04:51:48,245 PATHOLOGY. 6243 04:51:48,245 --> 04:51:49,513 WITHIN THE ALS SPACE AND FTD 6244 04:51:49,513 --> 04:51:53,650 SPACE AND LATE SPACE, THERE'S A 6245 04:51:53,650 --> 04:51:58,121 SENSE WHERE THE DIRECTION OF 6246 04:51:58,121 --> 04:51:58,655 PATHOPHYSIOLOGY HAS BEEN 6247 04:51:58,655 --> 04:52:00,190 DIFFICULT AND HARDER TO DETECT 6248 04:52:00,190 --> 04:52:02,860 COMPARED TO OTHER FORMS OF 6249 04:52:02,860 --> 04:52:07,598 PATHOLOGY BUT THE ABSENCE OF 6250 04:52:07,598 --> 04:52:12,536 TDP43 ACTION THROUGH THE KRY 6251 04:52:12,536 --> 04:52:14,271 KRYPTONS MAY BE EASIER TO DETECT 6252 04:52:14,271 --> 04:52:16,273 AND AS DR. NELSON SAID EXTREMELY 6253 04:52:16,273 --> 04:52:18,008 WELL, WE ALSO NEED TO THINK OF 6254 04:52:18,008 --> 04:52:19,009 OPPORTUNITIES TO COME UP WITH 6255 04:52:19,009 --> 04:52:24,648 TOOLS THAT WILL NOT END UP 6256 04:52:24,648 --> 04:52:28,519 HAVING BANKRUPT OUR SOCIETY TO 6257 04:52:28,519 --> 04:52:29,386 BE BLUNT AND BE AT THE 6258 04:52:29,386 --> 04:52:33,156 INTERSECTION AND NOT LOOKING FOR 6259 04:52:33,156 --> 04:52:35,859 EACH INDIVIDUAL FORM OF 6260 04:52:35,859 --> 04:52:37,694 PHOSPHORYLATED TDP43 BUT LOSS OF 6261 04:52:37,694 --> 04:52:40,531 FUNCTION THAT COULD BE 6262 04:52:40,531 --> 04:52:41,498 APPLICABLE ACROSS BECAUSE IT 6263 04:52:41,498 --> 04:52:43,100 WILL BE A LOT LESS EXPENSIVE FOR 6264 04:52:43,100 --> 04:52:45,536 OUR SOCIETY. 6265 04:52:45,536 --> 04:52:46,970 >> THOSE ARE ALL EXCELLENT 6266 04:52:46,970 --> 04:52:48,238 POINTS. 6267 04:52:48,238 --> 04:52:50,674 I THINK TRYING TO SEE WHERE OUR 6268 04:52:50,674 --> 04:52:53,911 BIOMARKERS OVERLAP VERSUS WHERE 6269 04:52:53,911 --> 04:52:56,380 THEY'RE DISTINCTIVE. 6270 04:52:56,380 --> 04:53:00,651 PET TRACERS MAY DIFFERENTIALLY 6271 04:53:00,651 --> 04:53:03,987 BIND TO AGGREGATE FORMS OF TDP43 6272 04:53:03,987 --> 04:53:07,324 AND THE CONTEXT OF LATE VERSUS 6273 04:53:07,324 --> 04:53:08,292 OTHER CONDITIONS. 6274 04:53:08,292 --> 04:53:12,663 I SEE ANOTHER HAND UP. 6275 04:53:12,663 --> 04:53:14,097 I THINK IT'S MITCH. 6276 04:53:14,097 --> 04:53:15,165 >> HI. 6277 04:53:15,165 --> 04:53:16,633 THANK YOU VERY MUCH. 6278 04:53:16,633 --> 04:53:23,240 I WANTED TO AMPLIFY SOME RECENT 6279 04:53:23,240 --> 04:53:33,750 COMMENTS ABOUT COMPLEXITY AND 6280 04:53:42,693 --> 04:53:44,528 BUT IN STUDIES WITH TESTING OF 6281 04:53:44,528 --> 04:53:46,530 COGNITION IN TERMS OF THAT TYPE 6282 04:53:46,530 --> 04:53:49,800 OF BIOMARKER TO LOOK AT WEATHER 6283 04:53:49,800 --> 04:53:58,442 THERE IS A CHARACTERISTIC OF 6284 04:53:58,442 --> 04:54:00,844 CO-OCCURRING AD PATHOLOGY WITH 6285 04:54:00,844 --> 04:54:01,878 MULTI-DOMAIN TESTING AND SEE 6286 04:54:01,878 --> 04:54:10,887 WHAT HAPPENS FIRST AND LATER ON. 6287 04:54:10,887 --> 04:54:12,956 A CORRELATION TO THAT IS 6288 04:54:12,956 --> 04:54:14,291 ASSOCIATION OF COGNITION IMPROVE 6289 04:54:14,291 --> 04:54:16,994 THE PRECISION OF THAT TYPE OF 6290 04:54:16,994 --> 04:54:17,527 COGNITIVE BIOMARKER GOING 6291 04:54:17,527 --> 04:54:22,466 FORWARD. 6292 04:54:22,466 --> 04:54:24,968 >> I'LL JUST -- THOSE ARE GREAT 6293 04:54:24,968 --> 04:54:26,370 QUESTIONS, MITCH. 6294 04:54:26,370 --> 04:54:32,309 THERE HAVE BEEN A NUMBER OF 6295 04:54:32,309 --> 04:54:33,343 ANTI-MORTEM, POSTMORTEM STUDIES 6296 04:54:33,343 --> 04:54:35,646 LOOKING AT COGNITION OVER TIME. 6297 04:54:35,646 --> 04:54:38,115 THERE'S BEEN A RUSH GROUP THAT'S 6298 04:54:38,115 --> 04:54:40,651 DONE BEAUTIFUL WORK LOOKING AT 6299 04:54:40,651 --> 04:54:42,386 COGNITIVE CHANGES AND THE 6300 04:54:42,386 --> 04:54:52,929 SEQUENCES OVER TIME BUT I ARGUE 6301 04:54:54,464 --> 04:54:55,532 DEFINING PEOPLE IN VIVO IS 6302 04:54:55,532 --> 04:54:58,602 CRITICAL TO GET MORE NUANCED 6303 04:54:58,602 --> 04:55:00,270 UNDERSTANDING OF COGNITION IS 6304 04:55:00,270 --> 04:55:03,874 YOUR NOT RELIANT ON PREVIOUSLY 6305 04:55:03,874 --> 04:55:05,475 COLLECTED STANDARDIZED DATA AND 6306 04:55:05,475 --> 04:55:07,778 IMPLEMENT DIGITAL BIOMARKERS. 6307 04:55:07,778 --> 04:55:08,512 THAT'S WHY THE FIRST 6308 04:55:08,512 --> 04:55:11,148 RECOMMENDATION REALLY STRESSES 6309 04:55:11,148 --> 04:55:14,384 THE IMPORTANCE OF DEEPLY 6310 04:55:14,384 --> 04:55:16,653 PHENOTYPED COHORTS WHERE WE'RE 6311 04:55:16,653 --> 04:55:17,788 FOLLOWING INDIVIDUALS AND 6312 04:55:17,788 --> 04:55:22,559 CLASSIFYING THEM LONGITUDINALLY 6313 04:55:22,559 --> 04:55:24,628 HOPEFULLY TO AUTOPSY AND LINK 6314 04:55:24,628 --> 04:55:26,630 WHAT WE SEE PATH LOGICALLY TO 6315 04:55:26,630 --> 04:55:27,197 WHAT WE'RE SEEING IN VIVO. 6316 04:55:27,197 --> 04:55:28,632 >> I AGREE. 6317 04:55:28,632 --> 04:55:38,809 THANK YOU. 6318 04:56:10,807 --> 04:56:11,775 >> GO AHEAD WITH YOUR QUESTION. 6319 04:56:11,775 --> 04:56:11,842 6320 04:56:17,314 --> 04:56:17,447 OKAY. 6321 04:56:17,447 --> 04:56:20,016 SO WE'LL ALSO HAVE TIME AGAIN AT 6322 04:56:20,016 --> 04:56:23,253 THE END OF DAY TWO TO TAKE 6323 04:56:23,253 --> 04:56:23,787 ADDITIONAL QUESTIONS AND 6324 04:56:23,787 --> 04:56:24,354 COMMENTS FROM ANY OF THE 6325 04:56:24,354 --> 04:56:29,893 SESSIONS FROM THE TWO DAYS. 6326 04:56:29,893 --> 04:56:32,529 >> SOME PEOPLE COULDN'T BE HERE. 6327 04:56:32,529 --> 04:56:36,733 I WANT TO SAY THANKS FOR JULIE 6328 04:56:36,733 --> 04:56:40,637 SNYDER A LEADER HERE AND 6329 04:56:40,637 --> 04:56:42,672 DRDR 6330 04:56:42,672 --> 04:56:44,508 DR. GIFFIN AND HAS BEEN A TREAT 6331 04:56:44,508 --> 04:56:47,978 TO WORK WITH ALL OF YOU. 6332 04:56:47,978 --> 04:56:48,411 >> THANK YOU, PETE. 6333 04:56:48,411 --> 04:56:51,181 >> THANK YOU SO MUCH. 6334 04:56:51,181 --> 04:56:52,649 AND GREAT JOB. 6335 04:56:52,649 --> 04:56:55,919 SORRY FOR RUNNING A LITTLE BIT 6336 04:56:55,919 --> 04:57:00,223 OVER BUT WE HAVE AFTER MEETING 6337 04:57:00,223 --> 04:57:02,259 SLIDES THAT WILL COME UP AND 6338 04:57:02,259 --> 04:57:04,661 WE'LL ADJOURN FOR THE DAY. 6339 04:57:04,661 --> 04:57:05,495 >> THANK YOU VERY MUCH. 6340 04:57:05,495 --> 04:57:05,829 THANK YOU ALL. 6341 04:57:05,829 --> 04:57:08,465