1
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>>ALL RIGHT, WELL, EVERYONE IS

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JOINING US ON ZOOM FOR THIS

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00:00:13,920 --> 00:00:19,760
COUNCIL MEETING--THROUGHOUT THE

4
00:00:19,760 --> 00:00:22,400
NEXT 2 DAYS AND COULD I HAVE THE

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00:00:22,400 --> 00:00:25,640
FIRST SLIDE, KELLIE?

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00:00:25,640 --> 00:00:27,520
WANT TO JUST START OFF BY JUST

7
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THANKING THE MEMBERS WHO ARE

8
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ROTATING OFF.

9
00:00:33,120 --> 00:00:39,040
AND THAT'S TOM CARMICHAEL, ANITA

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[INDISCERNIBLE], AARON

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[INDISCERNIBLE], ARNOLD

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[INDISCERNIBLE], AND EILEEN

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MURRAY, IT'S BEEN A REAL

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PLEASURE WORKING WITH YOU AND WE

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WORKED WITH EACH OF YOU PRETTY

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HARD THROUGHOUT THE LAST COUPLE

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OF YEARS.

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00:00:52,600 --> 00:00:54,000
SORRY, WE WEREN'T ABLE TO GET

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TOGETHER AS MUCH AS WE WOULD

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00:00:55,840 --> 00:00:57,280
HAVE OTHERWISE IN PERSON, BUT

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00:00:57,280 --> 00:00:59,640
I'M SURE THAT WE'RE GOING TO BE

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MIXING IT UP IN THE YEARS TO

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00:01:01,120 --> 00:01:01,440
COME.

24
00:01:01,440 --> 00:01:05,040
SO THANK YOU SO MUCH FOR YOUR

25
00:01:05,040 --> 00:01:06,760
SERVICE AND EXTEND THIS EXTRA

26
00:01:06,760 --> 00:01:07,880
MEETING WAITING FOR THE NEW

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MEMBERS TO BE OFFICIALLY

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APPROVED.

29
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WE HAVE A GREAT MEETING LINED UP

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FOR YOU IN THE NEXT COUPLE OF

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HOURS AND TOMORROW, AND NOW I

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WOULD JUST LIKE TO HAND IT OVER

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TO BOB.

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>> OKAY, I WILL LET YOU
ALL

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APPRECIATE THAT SLIDE FOR A

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SECOND.

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00:01:28,520 --> 00:01:30,720
WHY DON'T WE GO BACK TO

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SEEING--GO BACK TO SEEING

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EVERYBODY.

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00:01:34,880 --> 00:01:39,360
OKAY, SO I WOULD LIKE TO

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00:01:39,360 --> 00:01:40,040
ALSO--I'M BOB FINKELSTEIN, I

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WOULD ALSO LIKE TO WELCOME YOU

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TO THE OPEN SESSION, IT'S GREAT

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TO SEE EVERYBODY, EVEN IF YOU'RE

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IN YOUR RECK TANGLES.

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JUST A REMINDER THIS IS BEING

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VIDEOCAST LIVE AND IT'S ARCHIVED

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SO JUST KEEP THAT IN MIND, TRY

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00:01:56,800 --> 00:02:00,200
TO LOOK AND BE YOUR BEST.

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00:02:00,200 --> 00:02:02,400
SO I THINK WE HAVE THESE VIRTUAL

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MEDINGS DOWN BY NOW SO I WON'T

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TALK ABOUT FORMAT.

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00:02:06,400 --> 00:02:08,640
I WILL JUST SAY THAT TIM LIDEN

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HAS NOW PRETTY MUCH REPLACED

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KELLIE AS OUR FULL-TIME POINT OF

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CONTACT FOR COUNCIL WHICH IS A

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HUGE, HUGE JOB OF BEFORE, DURING

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AND AFTER COUNCIL AND TIM HAS

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DONE A PECK TACKULAR JOB GETTING

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UP TO SPEET.

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IT'S AMAZING. 

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ALSO WE HAVE BROOK, SHE WILL BE

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TAKING YOU IN AND OUT OF WAITING

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ROOMS IF YOU'RE IN CONFLICT AND

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HELPING IN MANY OTHER WAYS AND

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BROOK IS ALSO TERRIFIC AND

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KELLIE IS ALWAYS LURKING IN THE

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BACKGROUND MAKING SURE THINGS

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ARE OKAY, SO HELLO TO KELLIE.

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JUST THE ONLY THING I WILL SAY

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AS A REMINDER IS THAT IF YOU

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WANT TO SAY SOMETHING OR MAKE A

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MOTION, YOU CAN EITHER JUST

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SPEAK UP, THAT'S FINE WITH ME,

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OR YOU CAN RAISE YOUR EMOJI,

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HAND, IT'S PROBABLY EASIER SO I

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CAN KEEP TRACK OF WHO RAISED

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THEIR HANDS, WHEN AND WHEN WE

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00:03:03,600 --> 00:03:04,920
HAVE MOTIONS, TIM WILL ENTER THE

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00:03:04,920 --> 00:03:05,840
MOTION INTO THE CHAT AND YOU

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WILL BE VOTING IN THE CHAT.

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YES, NO, OBLIGATIONS STAIN. 

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OKAY, INTRODUCTION NOW, FIRST

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THING WE NEED IS THE FORMAL

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APPROVAL OF MINUTES FROM THE

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LAST MEETING WHICH IS IN THE

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ECB, FIRST POST BEING SECTION OF

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00:03:28,120 --> 00:03:29,880
THE NANDS GBL INFO TAB, UNLESS

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THERE'S A DESIRE TO DISCUSS

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THESE MINUTES IN INCREDIBLE

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DETAME, I WILL PAUSE FOR A

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SECOND, I NEED A MOTION TO

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APPROVE THE MINUTES AND A

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SECOND.

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>> SO MOVED.

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00:03:40,600 --> 00:03:42,440
>> THANK YOU, SECOND FROM
LUIS.

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>> AND TIM ENTERED THAT
INTO THE

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00:03:43,480 --> 00:03:48,520
CHAT OR HE WILL BE.

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00:03:48,520 --> 00:03:50,880
>> SO YOU'LL BE VOTING ON
THE

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00:03:50,880 --> 00:04:01,320
MOTION IN THE CHAT SO WHY AM I

101
00:04:01,320 --> 00:04:02,440
NOT SEEING THAT?

102
00:04:02,440 --> 00:04:04,960
>> OKAY, I DON'T WANT TO
HOLD US

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00:04:04,960 --> 00:04:07,400
UP ON THE MINUTES SO ALL WHO

104
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APPROVE OF THE MINUTE SAYS RAISE

105
00:04:09,640 --> 00:04:12,520
YOUR HANDS. 

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ANY OPPOSED?

107
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OKAY I'M GOING TO ASSUME THE

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00:04:16,920 --> 00:04:17,840
MINUTES ARE OPPOSED--APPROVED

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AND MEAN WHILE WE'LL WORK OUT

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00:04:18,840 --> 00:04:20,440
WHAT'S GOING ON IN THE CHAT.

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00:04:20,440 --> 00:04:21,560
MAYBE I'M DOING SOMETHING WRONG

112
00:04:21,560 --> 00:04:21,920
HERE.

113
00:04:21,920 --> 00:04:25,680
THERE IT IS, OKAY.

114
00:04:25,680 --> 00:04:28,360
OKAY, SO THE MINUTES ARE

115
00:04:28,360 --> 00:04:29,440
APPROVED, THAT'S EXCITING.

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00:04:29,440 --> 00:04:32,160
SO IN TERMS OF ALSO UNDER THE

117
00:04:32,160 --> 00:04:33,600
GENERAL INFORMATION CATEGORY IN

118
00:04:33,600 --> 00:04:37,160
THE ECP, ALL THE COUNCIL

119
00:04:37,160 --> 00:04:38,880
MEETINGS DATES THROUGH 2024 ARE

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00:04:38,880 --> 00:04:39,120
LISTED.

121
00:04:39,120 --> 00:04:41,560
NOIA THEY WILL CONTINUE TO BE ON

122
00:04:41,560 --> 00:04:43,800
WEDNESDAY AND THURSDAYS.

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00:04:43,800 --> 00:04:45,040
RIGHT NOW THEY'RE 1 TO

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00:04:45,040 --> 00:04:46,440
APPROXIMATELY 5:30 ON EACH OF

125
00:04:46,440 --> 00:04:48,120
THOSE DAYS SO PLEASE HOLD THOSE

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00:04:48,120 --> 00:04:49,840
DATES, LET US KNOW IF YOU HAVE A

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CONFLICT IN ADVANCE, WE'RE STILL

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BY THE WAY TRYING VERY HARD TO

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FIGURE OUT WHEN WE START HAVING

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PERSON TO PERSON MEETINGS, NOT

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TO MENTION, GOING OUT TO DINNER

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TOGETHER, WHICH IS A LOT OF FUN

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00:04:59,480 --> 00:05:01,040
AND WE WILL GET BACK TO YOU AS

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SOON AS WE KNOW MORE ABOUT THAT.

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THAT COULD END UP BEING FOR NOW

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00:05:04,280 --> 00:05:06,840
ONCE A YEAR OR WHATEVER.

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OKAY, I WILL MOVE ON TO THE EXIT

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REVIEW PROCESS, EVERY ROUND, I'M

139
00:05:11,680 --> 00:05:12,960
SUPPOSED TO REPORT TO YOU ON

140
00:05:12,960 --> 00:05:15,640
THIS, THIS IS WHAT 3 DESIGNATED

141
00:05:15,640 --> 00:05:19,680
COUNCIL MEMBERS, THIS TIME, I

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00:05:19,680 --> 00:05:21,160
THINK IT WAS KIM AND I THINK

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JOHN WAS THE THIRD 1, AND

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APPROVE A SUBSET OF APPLICATIONS

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00:05:26,960 --> 00:05:29,560
BEFORE COUNCIL MEETS.

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THIS ALLOWS OUR GRANTS

147
00:05:32,440 --> 00:05:34,680
MANAGEMENT BRANCH TO ISSUE THESE

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00:05:34,680 --> 00:05:35,720
AWARDS SOMETIME BEFORE COUNCIL

149
00:05:35,720 --> 00:05:37,000
SO THE PROJECTS CAN GET STARTED

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AS SOON AS POSSIBLE.

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WE TYPICALLY FOCUS ON GRANTS IN

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THE PAY LINE THAT HAVE NO

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ISSUES.

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AT THE MOMENT WE'RE ACTUALLY

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FOCUSING ON R21S OR RO3S,

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THERE'S ALSO RO-1s AS WELL, SO

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THANKS TO KEN AND JOHN AND THERE

158
00:05:54,240 --> 00:05:57,240
WERE 141 APPLICATIONS ELIGIBLE

159
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TO EXPEDITED, FOR BUDGETEDARY

160
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REASONS WE'RE NOW PAYING AND

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00:06:00,320 --> 00:06:01,640
POLICY REASONS, WE'RE NOW PAYING

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FEWER OF THESE APPLICATIONS TO A

163
00:06:05,160 --> 00:06:06,440
SEPTEMBER COUNCIL BUT MANY CASE,

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00:06:06,440 --> 00:06:07,840
WE ALREADY PAID A NUMBER OF THEM

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AND A NUMBER OF THEM AND THE

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OTHERS WILL BE ISSUED AS SOON AS

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WE POSSIBLY CAN, AND AS I SAY,

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EVERY TIME BUT IT BEARS

169
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REPEATING THIS, OUR ABILITY TO

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00:06:15,800 --> 00:06:17,400
DO THIS SO QUICKLY IS A

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TESTAMENT TO OUR REALLY AMAZING

172
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GRANTS MANAGEMENT BRANCH, LED BY

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SHELLY WILBOURN, NOT TO MENTION

174
00:06:25,480 --> 00:06:26,320
OUR TERRIFIC PROGRAM STAFF WHO

175
00:06:26,320 --> 00:06:27,760
HAVE TO GET EVERYTHING APPROVED

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IN THEIR SYSTEM IN ORDER FOR

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APPLICATIONS TO BE EXPEDITED.

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SO IN THE OLD DAYS WHEN PEOPLE

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USED TO GET TOGETHER IN ROOMS

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AND HAVE MEETINGS AND WE HAD

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MORE TIME, WE USED TO INTRODUCE

182
00:06:40,160 --> 00:06:42,200
ALL OUR NEW STAFF, AT A COUNCIL

183
00:06:42,200 --> 00:06:43,760
MEETING, WE HAVE LESS TIME,

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00:06:43,760 --> 00:06:46,320
WE'RE TRYING TO STREAMLINE THESE

185
00:06:46,320 --> 00:06:47,200
VIRTUAL MEETINGS, SO IF SOMEONE

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00:06:47,200 --> 00:06:50,440
COULD JUST PUT UP THE SLIDE

187
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LISTING THE NEW PEOPLE WHO ARE

188
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JOINING NINDS, YOU CAN TAKE A

189
00:06:57,280 --> 00:06:59,000
LOOK AT THAT AND YOU CAN ALSO

190
00:06:59,000 --> 00:07:01,160
READ THEIR BIOS IN THE ECB,

191
00:07:01,160 --> 00:07:02,680
THERE'S A LOT OF REALLY

192
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INTERESTING PEOPLE THAT GET

193
00:07:05,040 --> 00:07:05,680
HIRED HERE.

194
00:07:05,680 --> 00:07:09,760
THERE IT GOES, SO CAN YOU SEE,

195
00:07:09,760 --> 00:07:13,400
THERE'S NEW PEOPLE IN WALTER'S

196
00:07:13,400 --> 00:07:14,480
OFFICE, CLINICAL RESEARCH,

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DIVISION OF NEURAL RESEARCH,

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NEUROSCIENCE AND MY OFFICE, THE

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00:07:17,560 --> 00:07:18,880
OFFICE OF EXTRAMURAL ACTIVITIES

200
00:07:18,880 --> 00:07:26,440
AND DIVISION, AND ALSO IN THE

201
00:07:26,440 --> 00:07:27,800
ONCE OFFICE, I WON'T GO THROUGH

202
00:07:27,800 --> 00:07:29,600
ALL OF THEM BUT I ENCOURAGE YOU

203
00:07:29,600 --> 00:07:31,600
TO READ ABOUT THEM IN THE ECB,

204
00:07:31,600 --> 00:07:38,360
SO CAN YOU TAKE THAT SLIDE DOWN

205
00:07:38,360 --> 00:07:39,640
I THINK THAT'S ALL I NEED TO SAY

206
00:07:39,640 --> 00:07:40,160
SO I WILL TURN IT OVER TO WALTER

207
00:07:40,160 --> 00:07:41,720
FOR HIS DIRECTOR'S TALK.

208
00:07:41,720 --> 00:07:42,840
>>THANKS, BOB AND TO HELP
SAVE

209
00:07:42,840 --> 00:07:43,080
TIME AND ACTUALLY PRACTICE AND

210
00:07:43,080 --> 00:07:44,360
GET THE TALK RIGHT AND I

211
00:07:44,360 --> 00:07:45,640
RECORDED IT AGAIN AND SO WHY

212
00:07:45,640 --> 00:07:51,360
DON'T WE SHOW THE DIRECTOR'S
TALK

213
00:07:51,360 --> 00:07:53,960
>>HELLO I'M DR. WALTER

214
00:07:53,960 --> 00:07:55,040
KOROSHETZ, AND IT'S MY PLEASURE

215
00:07:55,040 --> 00:08:03,240
TO PRESENT TO YOU THE REPORT, AT

216
00:08:03,240 --> 00:08:04,200
THE 217th NINDS COUNCIL

217
00:08:04,200 --> 00:08:04,640
CHANGES.

218
00:08:04,640 --> 00:08:07,640
WANT TO TALK ABOUT CHANGES WITH

219
00:08:07,640 --> 00:08:08,800
THE NINA SCHOR, AS BEEN

220
00:08:08,800 --> 00:08:12,240
APPOINTED AS THE NEW NIH ACTING

221
00:08:12,240 --> 00:08:14,040
DEPUTY DIRECTOR FOR INTRAMURAL

222
00:08:14,040 --> 00:08:18,240
RESEARCH, SHE WILL REPLACE

223
00:08:18,240 --> 00:08:19,640
DR. MICHAEL GOTTESMAN, WHO HAS

224
00:08:19,640 --> 00:08:23,760
SERVED FOR THE PAST 29 YEARS. 

225
00:08:23,760 --> 00:08:25,680
AS YOU KNOW, DR. SCHOR WAS

226
00:08:25,680 --> 00:08:27,280
PREVIOUSLY WORKING AS THE ACTING

227
00:08:27,280 --> 00:08:29,760
SCIENTIFIC DIRECTOR SO WITH HER

228
00:08:29,760 --> 00:08:31,640
DEPARTURE, WE APPOINTED DR. JEFF

229
00:08:31,640 --> 00:08:34,040
DIAMOND AS THE ACTING SCIENTIFIC

230
00:08:34,040 --> 00:08:39,680
DIRECTOR FOR THE  THE INTRAMURAL

231
00:08:39,680 --> 00:08:41,640
RESEARCH PROGRAM, HE'S BEEN AN

232
00:08:41,640 --> 00:08:44,720
INVESTIGATOR AT NINDS FOR 23

233
00:08:44,720 --> 00:08:46,440
YEARS, STUDYING HOW SYNAPSES AND

234
00:08:46,440 --> 00:08:47,800
NEURONS AND SMALL CIRCUITS

235
00:08:47,800 --> 00:08:50,000
PERFORM IN THE COMPUTATIONAL

236
00:08:50,000 --> 00:08:52,240
TASKS REQUIRED FOR  MAMMALIAN

237
00:08:52,240 --> 00:08:55,280
RETINA AND WE ALSO APPOINTED AMY

238
00:08:55,280 --> 00:08:57,880
BANY ADAMS, THE CURRENT NINDS

239
00:08:57,880 --> 00:08:59,040
DEPUTY DIRECTOR FOR SCIENTIFIC

240
00:08:59,040 --> 00:09:01,160
MANAGEMENT AND OPERATIONS TO BE

241
00:09:01,160 --> 00:09:03,680
THE NINDS ACTING PRINCIPAL

242
00:09:03,680 --> 00:09:06,760
DEPUTY DIRECTOR AFTER

243
00:09:06,760 --> 00:09:08,040
DR. SCHOR'S DEPARTURE.

244
00:09:08,040 --> 00:09:10,360
IN ADDITION THERE ARE SOME

245
00:09:10,360 --> 00:09:12,440
LEADERSHIP CHANGES ACROSS NIH AT

246
00:09:12,440 --> 00:09:16,760
THE OTHER INSTITUTES, DR. MONICA

247
00:09:16,760 --> 00:09:19,280
BERTAGNOLLI, SURGEON AT THE

248
00:09:19,280 --> 00:09:20,440
DANNA FARBER CANCER INSTITUTE

249
00:09:20,440 --> 00:09:24,320
HAS BEEN SELECTED AS THE NEW

250
00:09:24,320 --> 00:09:26,520
DIRECTOR OF THE NATIONAL CANCER

251
00:09:26,520 --> 00:09:28,440
INSTITUTE, AND AS YOU PROBABLY

252
00:09:28,440 --> 00:09:31,320
HEARD IN DECEMBER, DR. ANTHONY

253
00:09:31,320 --> 00:09:32,200
FAUCI, ANNOUNCED HE IS STEPPING

254
00:09:32,200 --> 00:09:34,200
DOWN FROM THE POSITION OF

255
00:09:34,200 --> 00:09:36,560
DIRECTOR OF THE NIAID AND AS

256
00:09:36,560 --> 00:09:38,320
WELL AS THE POSITION OF THE

257
00:09:38,320 --> 00:09:40,960
CHIEF MEDICAL ADVISOR TO THE

258
00:09:40,960 --> 00:09:41,240
PRESIDENT.

259
00:09:41,240 --> 00:09:43,920
IN HIS 54 YEARS AT NIH,

260
00:09:43,920 --> 00:09:47,760
DR. FAUCI HAS SERVED AS DIRECTOR

261
00:09:47,760 --> 00:09:49,360
OF NIAID FOR 38 YEARS AND

262
00:09:49,360 --> 00:09:50,760
ADVISED 7 U.S. PRESIDENTS WHO

263
00:09:50,760 --> 00:09:52,960
HAD A NUMBER OF SERIOUS

264
00:09:52,960 --> 00:09:58,520
INFECTIOUS DISEASE PANDEMICS AND

265
00:09:58,520 --> 00:09:59,440
OTHER CONDITIONS.

266
00:09:59,440 --> 00:10:01,960
AS I ALWAYS DO, START OFF BY

267
00:10:01,960 --> 00:10:02,640
TALKING ABOUT THE BUDGET.

268
00:10:02,640 --> 00:10:05,320
AS YOU CAN SEE HERE IN THE

269
00:10:05,320 --> 00:10:09,600
SLIDE, NINDS HAS BEEN FORTUNATE

270
00:10:09,600 --> 00:10:11,040
TO RECEIVE INCREASES IN ITS BASE

271
00:10:11,040 --> 00:10:13,920
BUDGET OVER THE YEARS, SEEN HERE

272
00:10:13,920 --> 00:10:17,920
IN 2018, LOOKING TO 2023,

273
00:10:17,920 --> 00:10:18,720
HOWEVER, THERE'S 2 BUDGETS THAT

274
00:10:18,720 --> 00:10:20,280
WE HAVE TO PAY ATTENTION TO, 1

275
00:10:20,280 --> 00:10:23,080
IS THE HOUSE BUDGET, THE OTHER

276
00:10:23,080 --> 00:10:25,680
THE SENATE BUDGET AND IN

277
00:10:25,680 --> 00:10:27,120
ADDITION, THE EXPECTATION IS

278
00:10:27,120 --> 00:10:30,200
THAT IT WILL NOT BE A BUDGET

279
00:10:30,200 --> 00:10:33,360
UNTIL THE ELECTION AND

280
00:10:33,360 --> 00:10:35,000
POTENTIALLY NOT EVEN TO LATE

281
00:10:35,000 --> 00:10:37,040
WINTER, AND THAT WILL BE

282
00:10:37,040 --> 00:10:39,080
OPERATING UNDER WHAT'S CALLED A

283
00:10:39,080 --> 00:10:41,880
CONTINUING RESOLUTION, WHICH IS

284
00:10:41,880 --> 00:10:43,280
THE SAME AMOUNT OF MONEY THAT

285
00:10:43,280 --> 00:10:45,160
WE'VE GOT IN 2022, IS WHAT WE

286
00:10:45,160 --> 00:10:50,000
WOULD PLAN FOR TO USE IN 2023.

287
00:10:50,000 --> 00:10:51,760
SO WE'RE PLANNING FOR OPERATING

288
00:10:51,760 --> 00:10:55,360
UNDER WHAT WE CALL THE C. R., WE

289
00:10:55,360 --> 00:11:00,160
HAVE 2 OTHER BUDGETS TO LOOK AT.

290
00:11:00,160 --> 00:11:02,960
IN THE 2023 HOUSE MARK, COME TO

291
00:11:02,960 --> 00:11:05,240
US, THEREY'S A 10% INCREASE IN

292
00:11:05,240 --> 00:11:08,560
THE NINDS BASE, ONLY 3.1% IN THE

293
00:11:08,560 --> 00:11:10,840
SENATE MARK.

294
00:11:10,840 --> 00:11:12,520
NOW THE NINDS, WE PRESENTED DOES

295
00:11:12,520 --> 00:11:13,520
NOT INCLUDE THE FUND THAGOREAN

296
00:11:13,520 --> 00:11:15,200
COMES TO NIH TO THE BRAIN

297
00:11:15,200 --> 00:11:16,720
INITIATIVE OR THE HEAL

298
00:11:16,720 --> 00:11:20,920
INITIATIVE TO HELP END ADDICTION

299
00:11:20,920 --> 00:11:21,640
LONG-TERM.

300
00:11:21,640 --> 00:11:24,440
WE NEED MUCH OF THE PAIN

301
00:11:24,440 --> 00:11:26,520
RESEARCH, IF THOSE ADDITIONAL

302
00:11:26,520 --> 00:11:27,200
APPROPRIATIONS ARE AT AN END AND

303
00:11:27,200 --> 00:11:28,600
YOU SLEEP APNEA AND OBESITYY

304
00:11:28,600 --> 00:11:32,000
THAT IN THIS RED BOX, TOTAL

305
00:11:32,000 --> 00:11:34,800
NINDS APPROPRIATION, INCLUDING

306
00:11:34,800 --> 00:11:36,320
THESE ADDITIONAL MONIES.

307
00:11:36,320 --> 00:11:40,960
THAT WOULD GIVE 8.5% INCREASE

308
00:11:40,960 --> 00:11:46,160
UNDER 2023, HOUSE MARKS AND

309
00:11:46,160 --> 00:11:47,560
SENATE MARKS, I WANT TO MENTION

310
00:11:47,560 --> 00:11:50,080
THAT THE HOUSE MARKS IS A

311
00:11:50,080 --> 00:11:51,200
200 MILLION INCREASE TOTALS

312
00:11:51,200 --> 00:11:53,520
JEIMER INITIATIVE AND AS YOU

313
00:11:53,520 --> 00:11:55,120
KNOW NINDS, MANAGES ABOUT 10% OF

314
00:11:55,120 --> 00:11:58,120
THOSE FUNDS AND THIS WOULD

315
00:11:58,120 --> 00:12:01,320
INCREASE OWSH ADMIN RECORDS AND

316
00:12:01,320 --> 00:12:01,920
MINISTRATION, THIS INITIATIVE

317
00:12:01,920 --> 00:12:03,080
$294 MILLION A YEAR SO THAT'S

318
00:12:03,080 --> 00:12:06,960
WHAT THE BUDGET LOOKS LIKE RIGHT

319
00:12:06,960 --> 00:12:07,440
NOW.

320
00:12:07,440 --> 00:12:11,520
AND WE BREAK THIS DOWN INTO

321
00:12:11,520 --> 00:12:12,400
NONCOMPETING FUNDS, NONCOMPETING

322
00:12:12,400 --> 00:12:15,040
MEANS THAT THIS MONEY HAS BEEN

323
00:12:15,040 --> 00:12:16,560
OBLIGATED, THROUGH GRANTS THAT

324
00:12:16,560 --> 00:12:19,880
MAY LAST 2, 3, 5 YEARS, WITH THE

325
00:12:19,880 --> 00:12:21,680
OUT YEAR COURSE FOR GRANTS,

326
00:12:21,680 --> 00:12:24,040
THAT'S GOING UP BY ABOUT

327
00:12:24,040 --> 00:12:25,360
50 MILLION IN 2023, UNDER A

328
00:12:25,360 --> 00:12:26,680
CONTINUING RESOLUTION, SO ALL

329
00:12:26,680 --> 00:12:29,200
THESE NUMBERS ARE IN THE WORST

330
00:12:29,200 --> 00:12:32,080
CASE SCENARIO, CONTINUING

331
00:12:32,080 --> 00:12:32,560
RESOLUTION.

332
00:12:32,560 --> 00:12:33,760
FOR COMPETING FUNDS, THE FUNDS

333
00:12:33,760 --> 00:12:34,960
THAT ARE USED FOR NEW GRANTS

334
00:12:34,960 --> 00:12:37,080
WITHIN THE PAY LINES AND THESE

335
00:12:37,080 --> 00:12:39,440
ARE GRANTS AND MOSTLY RO-1s

336
00:12:39,440 --> 00:12:46,480
AND R21S THAT COME IN UNDER THE

337
00:12:46,480 --> 00:12:48,800
PARENT AWARD AND THEY GET TO

338
00:12:48,800 --> 00:12:53,200
2023, WITH THE C. R., WE HAVE

339
00:12:53,200 --> 00:12:56,480
LESS COMPETING FUNDS BUT WE WERE

340
00:12:56,480 --> 00:13:04,000
ABLE TO FUND A NUMBER OF

341
00:13:04,000 --> 00:13:06,000
PROJECTS NAMELY R21s, IN 2022

342
00:13:06,000 --> 00:13:08,560
MONEY AND FULLY FUND THEM FOR

343
00:13:08,560 --> 00:13:11,160
THEIR 2023 YEARS AND THAT

344
00:13:11,160 --> 00:13:13,160
ACTUALLY IS WHAT ALLOWS US TO

345
00:13:13,160 --> 00:13:17,200
KEEP THE 14th PERCENTILE IN

346
00:13:17,200 --> 00:13:20,240
THE CASE OF A C. R., SCENEOT

347
00:13:20,240 --> 00:13:24,360
NEXT SLIDE OF THE NONPAY LINE

348
00:13:24,360 --> 00:13:25,600
INVESTMENTS AND THESE INCLUDE

349
00:13:25,600 --> 00:13:26,880
EARLY STAGE INVESTIGATORS ABOVE

350
00:13:26,880 --> 00:13:31,040
THE PAY LINE GRANTS, BRIDGES TO

351
00:13:31,040 --> 00:13:32,720
MULTIPLE PIs, PROGRAM PRIORITY

352
00:13:32,720 --> 00:13:34,440
GRANTINGS, THE R35 PROGRAM,

353
00:13:34,440 --> 00:13:35,360
WHICH FUNDS INVESTIGATORS FOR 8

354
00:13:35,360 --> 00:13:39,200
YEARS WITH A CAP OF 750 K AND

355
00:13:39,200 --> 00:13:43,360
REMOVES THEM FROM THE RO-1 POOL

356
00:13:43,360 --> 00:13:44,400
AND TRIALS, SUPPLEMENTATION

357
00:13:44,400 --> 00:13:46,280
PROGRAM AND ADDITIONAL FOARE

358
00:13:46,280 --> 00:13:50,400
As AND THIS AMOUNTS TO

359
00:13:50,400 --> 00:13:53,880
105 MILLION IN 2023 UNDER THE C.

360
00:13:53,880 --> 00:13:55,680
R., PRETTY CLOSE TO WHAT WAS

361
00:13:55,680 --> 00:13:59,680
2022, AND YOU CAN SEE HERE, THE

362
00:13:59,680 --> 00:14:01,800
PIE GRAPHS, THE DISTRIBUTION OF

363
00:14:01,800 --> 00:14:03,520
NONCOMPETING AND COMPETING AND

364
00:14:03,520 --> 00:14:14,000
PAY LINE VERSUS NONPAY LINE

365
00:14:14,560 --> 00:14:14,800
INVESTMENT.

366
00:14:14,800 --> 00:14:16,680
NOW I WANT TO MOVE TO JUST

367
00:14:16,680 --> 00:14:19,000
MENTION BRIEFLY THE ADVANCED

368
00:14:19,000 --> 00:14:20,440
RESEARCH PROJECT AGENCY FOR

369
00:14:20,440 --> 00:14:22,840
HEALTH CALLED ARP A-H, THIS IS A

370
00:14:22,840 --> 00:14:26,920
NEW AGENCY THAT'S SET UP MODELED

371
00:14:26,920 --> 00:14:31,640
ON THE DEFENSE ADVANCE RESEARCH

372
00:14:31,640 --> 00:14:33,280
PROJECT OR DARPA, AND WE ARE

373
00:14:33,280 --> 00:14:34,200
STILL CURRENTLY WAITING FOR A

374
00:14:34,200 --> 00:14:38,320
DIRECTOR TO BE NAMED, THE DEPUTY

375
00:14:38,320 --> 00:14:40,440
DIRECTOR DR. ADAM RUSSELL WAS,A

376
00:14:40,440 --> 00:14:41,320
POINTED AS ACTING AND HIS WORK

377
00:14:41,320 --> 00:14:44,960
TO SET UP THE INFRASTRUCTURE,

378
00:14:44,960 --> 00:14:46,760
ADMINISTRATIVE OFFICES,

379
00:14:46,760 --> 00:14:47,760
FACILITY, I.T., HIRING

380
00:14:47,760 --> 00:14:50,080
ADMINISTRATIVE POSITIONS, BUT

381
00:14:50,080 --> 00:14:52,200
IT'S NOT ENGAGED IN DEVELOPING

382
00:14:52,200 --> 00:14:55,800
THE SCIENCE PROJECTS, AT ARP

383
00:14:55,800 --> 00:15:04,040
A-H, THESE AWAIT THE NAMING OF A

384
00:15:04,040 --> 00:15:04,480
PERMANENT DIRECTOR.

385
00:15:04,480 --> 00:15:07,200
BUT AT OUR LAST COUNCIL, MAY

386
00:15:07,200 --> 00:15:09,920
RECALL WE HAD A VERY SPIRITED

387
00:15:09,920 --> 00:15:12,000
DISCUSSION ABOUT OPEN ACCESS

388
00:15:12,000 --> 00:15:14,840
WHICH IS MAKING PUBLICATIONS

389
00:15:14,840 --> 00:15:16,520
IMMEDIATELY ACCESSIBLE TO THE

390
00:15:16,520 --> 00:15:20,360
PUBLIC AND OF NOTE, THE

391
00:15:20,360 --> 00:15:21,320
PRESIDENT IN AUGUST 25th

392
00:15:21,320 --> 00:15:23,440
SIGNED A NEW POLICY THAT WILL

393
00:15:23,440 --> 00:15:25,720
REQUIRE ALL THE U.S. AGENCIES TO

394
00:15:25,720 --> 00:15:27,040
INSURE IMMEDIATE ACCESS TO

395
00:15:27,040 --> 00:15:29,000
FEDERALLY FUNDED RESEARCH AFTER

396
00:15:29,000 --> 00:15:30,600
THIS PUBLISHED, START NOTHING

397
00:15:30,600 --> 00:15:31,120
2026.

398
00:15:31,120 --> 00:15:33,200
AND SO PEER REVIEW WORK, FROM

399
00:15:33,200 --> 00:15:34,840
THE FEDERAL GRANT RECIPIENTS

400
00:15:34,840 --> 00:15:37,080
MUST BE MADE AVAILABLE IN THE

401
00:15:37,080 --> 00:15:39,080
PUBLIC REPOSITORY WITHOUT DELAY

402
00:15:39,080 --> 00:15:39,680
AFTER PUBLICATION.

403
00:15:39,680 --> 00:15:41,680
NIH IS NOW WORKING WITH THE

404
00:15:41,680 --> 00:15:46,320
STAKEHOLDERS, TO GEP A PLAN AS

405
00:15:46,320 --> 00:15:49,120
WELL OPERATIONALIZE THIS POLICY,

406
00:15:49,120 --> 00:15:50,720
FOR NIH FUNDED RESEARCH AND WE

407
00:15:50,720 --> 00:15:55,000
WILL BE HEARING FROM DR. MICHAEL

408
00:15:55,000 --> 00:15:58,760
LAUER TODAY WHO WILL TALK ABOUT

409
00:15:58,760 --> 00:16:00,280
ANOTHER TOPIC CLOSELY RELATED

410
00:16:00,280 --> 00:16:02,000
AND THAT'S THE DATA MECHANICMENT

411
00:16:02,000 --> 00:16:06,760
SHARING POLICY, AND PERHAPS ALSO

412
00:16:06,760 --> 00:16:14,480
LEAD INTO SOME MENTION ABOUT THE

413
00:16:14,480 --> 00:16:15,800
EQUITABLE ACCESS TO AMERICA'S

414
00:16:15,800 --> 00:16:17,520
RESEARCH POLICY, THE NEW DATA

415
00:16:17,520 --> 00:16:19,720
PLAN REQUIRES A PLAN FOR SHARING

416
00:16:19,720 --> 00:16:21,200
BOTH PUBLISHED AND NONPUBLISHED

417
00:16:21,200 --> 00:16:24,280
DATA AND THIS WILL APPLY TO ALL

418
00:16:24,280 --> 00:16:29,920
APPLICATIONS RECEIVED AFTER

419
00:16:29,920 --> 00:16:30,960
JANUARY 25th, 2023 AND SHY

420
00:16:30,960 --> 00:16:32,600
SILVER BERG FROM THE RESEARCH

421
00:16:32,600 --> 00:16:33,840
QUALITY OFFICE HAS BEEN VERY

422
00:16:33,840 --> 00:16:34,840
ACTIVE IN TRYING TO UNDERSTAND

423
00:16:34,840 --> 00:16:38,280
HOW WE CAN MAKE DATA THAT IS

424
00:16:38,280 --> 00:16:40,240
POSTED, NOT ATTACHED TO THE

425
00:16:40,240 --> 00:16:41,720
PUBLICATION USED BY THE

426
00:16:41,720 --> 00:16:42,840
SCIENTIFIC COMMUNITY AND WILL BE

427
00:16:42,840 --> 00:16:46,600
TALKING ABOUT SOME OF THOSE

428
00:16:46,600 --> 00:16:49,720
IDEAS AT TODAY'S COUNCIL ALONG

429
00:16:49,720 --> 00:16:50,680
WITH DR. LAUER.

430
00:16:50,680 --> 00:16:55,800
SO THANK YOU VERY MUCH FOR THAT

431
00:16:55,800 --> 00:16:57,240
MICHAEL, FOR COMING.

432
00:16:57,240 --> 00:16:58,960
WE WILL WILL TALK A LITTLE BIT

433
00:16:58,960 --> 00:17:00,120
ABOUT THE UNDIAGNOSED DISEASE

434
00:17:00,120 --> 00:17:02,760
NETWORK, THIS IS WAS A COMMON

435
00:17:02,760 --> 00:17:07,160
PROGRAM THAT START INDEED 2013,

436
00:17:07,160 --> 00:17:13,160
AND IT FOCUSES ON BRINGING CASES

437
00:17:13,160 --> 00:17:14,280
OF APPLIED DIAGNOSIS, MANY

438
00:17:14,280 --> 00:17:16,080
CHILDREN, ALSO ADULT WHO IS

439
00:17:16,080 --> 00:17:17,520
RELIES UPON THE CLINICAL

440
00:17:17,520 --> 00:17:21,280
ADVANCES IN CLINICAL GENOMICS TO

441
00:17:21,280 --> 00:17:25,800
MAKE DIAGNOSIS AND THEN TO

442
00:17:25,800 --> 00:17:27,320
UNDERSTAND HOW THESE GENOMIC

443
00:17:27,320 --> 00:17:29,240
VARIANTS GIVE RISE TO DISEASE.

444
00:17:29,240 --> 00:17:32,120
SO IT'S A VERY STRONG RESEARCH

445
00:17:32,120 --> 00:17:34,560
COMPONENT AND ALSO, HAS MADE A

446
00:17:34,560 --> 00:17:36,160
HUGE DIFFERENCE AND BRING SAYING

447
00:17:36,160 --> 00:17:39,760
WHOLE GENOME WIDE SEQUENCING DUE

448
00:17:39,760 --> 00:17:40,880
TO THE DIAGNOSTIC

449
00:17:40,880 --> 00:17:41,680
[INDISCERNIBLE].

450
00:17:41,680 --> 00:17:42,800
NOW IT'S ALL COUNTER POINT

451
00:17:42,800 --> 00:17:44,280
PROJECTS, DO THEY LEAVE THE

452
00:17:44,280 --> 00:17:47,040
COMMON FUND SOURCE OF FUNDING,

453
00:17:47,040 --> 00:17:48,920
AND SOMETHINGMENT AND NINDS,

454
00:17:48,920 --> 00:17:51,280
WHICH HAS BEEN LEADING WITH

455
00:17:51,280 --> 00:17:54,800
NHGRI, SINCE THE BEGINNING, WILL

456
00:17:54,800 --> 00:17:59,000
BE LEADING THE TRANSITION OUT OF

457
00:17:59,000 --> 00:17:59,840
THE COMMON FUND.

458
00:17:59,840 --> 00:18:07,280
AND WE TALKED A LITTLE BIT LAST

459
00:18:07,280 --> 00:18:09,360
TIME ABOUT HOW THE PLAN GOING

460
00:18:09,360 --> 00:18:12,480
FORWARD WILL OCCUR. 

461
00:18:12,480 --> 00:18:15,800
WE HAVE RELEASED SOLICITATION

462
00:18:15,800 --> 00:18:18,240
FOR GRANTS FOR THE DATA

463
00:18:18,240 --> 00:18:18,880
MANAGEMENT COORDINATING CENTER

464
00:18:18,880 --> 00:18:22,240
WHICH WILL BE THE HUB FOR THE

465
00:18:22,240 --> 00:18:24,200
UDN OR UDN 2.0 AND THEY WILL

466
00:18:24,200 --> 00:18:25,320
PROVIDE THE INFRASTRUCTURE, DATA

467
00:18:25,320 --> 00:18:26,280
MANAGEMENT AND CLINICAL RESEARCH

468
00:18:26,280 --> 00:18:28,040
SUPPORT FOR A NEW NETWORK OF

469
00:18:28,040 --> 00:18:29,880
CLINICAL SITES THAT WILL

470
00:18:29,880 --> 00:18:32,120
INVESTIGATE PERSONS WITH

471
00:18:32,120 --> 00:18:34,080
UNDIAGNOSED DISORDERS, WE HOPE

472
00:18:34,080 --> 00:18:38,160
TO EXPAND OUT PAST THE GENOMIC

473
00:18:38,160 --> 00:18:41,400
TESTING TO THINGS LIKE,

474
00:18:41,400 --> 00:18:44,600
EXAMINING IMMUNOLOGIC DISORDERS

475
00:18:44,600 --> 00:18:49,760
OR METABOLIC DISORDERS OF THESE

476
00:18:49,760 --> 00:18:50,720
CONDITIONS AS WELL.

477
00:18:50,720 --> 00:18:52,000
WE INSHALLLY AS WE MENTIONED HAD

478
00:18:52,000 --> 00:18:54,680
THE PLAN TO PUT OUT WHAT'S

479
00:18:54,680 --> 00:18:59,560
CALLED AN EXO1 WHICH IS ACCESS

480
00:18:59,560 --> 00:19:01,160
TO THE UDN DATA MANAGEMENT

481
00:19:01,160 --> 00:19:03,760
COORDINATING CENTER FOR CENTERS,

482
00:19:03,760 --> 00:19:04,920
CLINICAL SITES AROUND THE

483
00:19:04,920 --> 00:19:08,240
COUNTRY TO DRAW IN AND TO WORK

484
00:19:08,240 --> 00:19:10,800
IN A THEME SCIENCE MATTER ON

485
00:19:10,800 --> 00:19:11,240
THEIR CASES.

486
00:19:11,240 --> 00:19:15,320
WE DID NOT INITIALLY HAVE THE

487
00:19:15,320 --> 00:19:18,160
EXPECTATION THAT THESE WOULD BE

488
00:19:18,160 --> 00:19:19,800
FUNDED BY NIH BUT THAT MUCH OF

489
00:19:19,800 --> 00:19:22,520
THIS WORK WOULD BE CLINICAL

490
00:19:22,520 --> 00:19:26,360
CARE, BUT WE SEE CONTINUAL

491
00:19:26,360 --> 00:19:28,280
FEEDBACK FROM MANY PATIENTS AND

492
00:19:28,280 --> 00:19:30,320
FAMILIES AT THE SITES THEMSELVES

493
00:19:30,320 --> 00:19:32,800
INDICATE THAT WOULD BE DIFFICULT

494
00:19:32,800 --> 00:19:35,600
TO DO WITHOUT FUNDING.

495
00:19:35,600 --> 00:19:37,400
SO WE'VE NOW HAVE DONE IS PUT

496
00:19:37,400 --> 00:19:38,800
OUT A LIMITED 1 YEAR COMPETITION

497
00:19:38,800 --> 00:19:40,280
TO THE CURRENT SITE THAT WILL

498
00:19:40,280 --> 00:19:42,040
ENABLE THEM TO ENROLL IN NEW

499
00:19:42,040 --> 00:19:43,560
CASES IN THE ENSUING YEAR AND

500
00:19:43,560 --> 00:19:44,320
ESTABLISH THE EFFICIENT

501
00:19:44,320 --> 00:19:46,160
PROCESSES TO WORK WITH THE NEW

502
00:19:46,160 --> 00:19:47,400
DATA MANAGEMENT CENTER, AND

503
00:19:47,400 --> 00:19:52,120
ACTUALLY TO WORK ON EXPANDING

504
00:19:52,120 --> 00:19:53,760
ACCESS TO UNINSURED PARTICIPANT

505
00:19:53,760 --> 00:19:55,120
AND DEVELOP FURTHER

506
00:19:55,120 --> 00:19:58,160
SUSTAINABILITY PLANS GOING

507
00:19:58,160 --> 00:19:58,440
FORWARD.

508
00:19:58,440 --> 00:20:00,160
FY23, WE HOPE THAT WITH THE HELP

509
00:20:00,160 --> 00:20:02,680
OF THE CONGRESS WE WILL BE ABLE

510
00:20:02,680 --> 00:20:03,760
TO EXPAND THE CLINICAL SITE,

511
00:20:03,760 --> 00:20:05,680
FUND THEM TO SOME DEGREE, SO

512
00:20:05,680 --> 00:20:08,920
THAT THEY WILL BE ABLE TO DO THE

513
00:20:08,920 --> 00:20:11,360
RESEARCH COMPONENT AND THE

514
00:20:11,360 --> 00:20:12,360
ACCORD NATION COMPONENT

515
00:20:12,360 --> 00:20:14,240
NECESSARY TO TAKE PART IN THE

516
00:20:14,240 --> 00:20:16,720
UDN AS MAJOR CONTRIBUTORS AND TO

517
00:20:16,720 --> 00:20:24,360
EXPAND THE ACCESS TO SITES THAT

518
00:20:24,360 --> 00:20:26,360
ARE SERVING THE LEADERS OF

519
00:20:26,360 --> 00:20:27,960
COUNTRY OF LOW SOCIOECONOMIC

520
00:20:27,960 --> 00:20:30,360
STATUS TO IMPROVE THE DIVERSITY

521
00:20:30,360 --> 00:20:39,720
OF UDN FOR HOPEFULLY FY2023

522
00:20:39,720 --> 00:20:39,920
PLAN.

523
00:20:39,920 --> 00:20:45,880
>> NOW I'M GOING TO GO AND
TALK

524
00:20:45,880 --> 00:20:50,520
ABOUT THE POST ACUTE SEQUELACE

525
00:20:50,520 --> 00:20:52,760
OF COVID, THEY HAVE RELEASED A

526
00:20:52,760 --> 00:20:54,760
STRATEGIC PLAN FOR DEALING WITH

527
00:20:54,760 --> 00:20:56,200
LONG COVID AND THIS INCLUDES

528
00:20:56,200 --> 00:20:58,080
ACTION PLAN AND ALSO SERVICES

529
00:20:58,080 --> 00:21:00,360
SYMPTOMS THAT SUPPORTS LONGER

530
00:21:00,360 --> 00:21:02,240
TERM IMPACT TO COVID-19.

531
00:21:02,240 --> 00:21:05,200
COVID HAS AFFECTED MILLIONS OF

532
00:21:05,200 --> 00:21:06,440
PEOPLE IN THE UNITED STATES AND

533
00:21:06,440 --> 00:21:08,840
WILL LIKELY HAVE A SIGNIFICANT

534
00:21:08,840 --> 00:21:10,240
IMPACT ON THE FUTURE HEALTH OF

535
00:21:10,240 --> 00:21:13,440
THE COUNTRY AND SO THE

536
00:21:13,440 --> 00:21:16,800
GOVERNMENT'S RESPONSE IS TO TRY

537
00:21:16,800 --> 00:21:18,760
TO DEVELOP PLANS TO HELP THOSE

538
00:21:18,760 --> 00:21:28,160
WHO ARE SUFFERING NOW, AND TO

539
00:21:28,160 --> 00:21:30,760
PLAN FOR HOW TO DEAL WITH THESE,

540
00:21:30,760 --> 00:21:33,800
NOW WE TALKED ABOUT IN THE

541
00:21:33,800 --> 00:21:34,520
CURRENT INITIATIVES RESEARCH

542
00:21:34,520 --> 00:21:43,640
SIDE OF THE PLAN AND NIH, WE'VE

543
00:21:43,640 --> 00:21:46,080
SEEN 1.15 BILLION DOLLARS TO

544
00:21:46,080 --> 00:21:47,000
DEVELOP A COMPREHENSIVE RESEARCH

545
00:21:47,000 --> 00:21:47,360
PROGRAM.

546
00:21:47,360 --> 00:21:49,120
AS WE TALKED IN THE PAST, THIS

547
00:21:49,120 --> 00:21:50,960
INCLUDES LONGER TEAM OF COHORT

548
00:21:50,960 --> 00:21:57,760
STUDIES OF THOUSANDS OF

549
00:21:57,760 --> 00:21:59,480
PARTICIPANTS SO THEY CAN BE

550
00:21:59,480 --> 00:22:01,960
MONITORED WITH HOW THEY COVER

551
00:22:01,960 --> 00:22:04,840
OVERTIME AND PIECE APART THOSE

552
00:22:04,840 --> 00:22:06,840
WHO DETERMINE THOSE WHO HAVE A

553
00:22:06,840 --> 00:22:08,160
GOOD RECOVERY VERSUS THOSE WHO

554
00:22:08,160 --> 00:22:08,600
DON'T.

555
00:22:08,600 --> 00:22:10,000
AND ALSO INCLUDES PEOPLE WHO ARE

556
00:22:10,000 --> 00:22:14,040
ALREADY SUFFERING FROM POST

557
00:22:14,040 --> 00:22:15,880
ACUTE SE, EQUELACE, INFECTION,

558
00:22:15,880 --> 00:22:17,400
FROM MONTHS AGO, LONG WITH

559
00:22:17,400 --> 00:22:19,360
CONTROL POPULATIONS AGAIN TO DO

560
00:22:19,360 --> 00:22:20,280
THAT COMPARISON, AND WHAT'S THE

561
00:22:20,280 --> 00:22:21,480
DIFFERENCE BETWEEN THOSE WHO HAD

562
00:22:21,480 --> 00:22:24,200
COVID AND MADE A GREAT RECOVERY,

563
00:22:24,200 --> 00:22:28,240
VERSUS THOSE WHO HAD COVID

564
00:22:28,240 --> 00:22:30,360
INFECTION AND ARE STILL

565
00:22:30,360 --> 00:22:31,200
SUFFERING FROM PERSISTENT

566
00:22:31,200 --> 00:22:31,720
SYMPTOMS.

567
00:22:31,720 --> 00:22:32,960
THERE IS ELECTRONIC HEALTH

568
00:22:32,960 --> 00:22:34,000
RECORD STUDY SYSTEM THAT'S BEEN

569
00:22:34,000 --> 00:22:38,760
SET UP THAT HAS ACCESS TO

570
00:22:38,760 --> 00:22:40,760
60 MILLION RECORDS, ALREADY MADE

571
00:22:40,760 --> 00:22:43,400
SIGNIFICANT OBSERVATIONS ON

572
00:22:43,400 --> 00:22:47,320
INSTANCE AND DIFFERENT TYPES OF

573
00:22:47,320 --> 00:22:49,640
TROUBLES EXHIBITED BY PEOPLE WHO

574
00:22:49,640 --> 00:22:56,760
ARE SUFFERING FROM LONG COVID.

575
00:22:56,760 --> 00:22:59,120
WE FUNDED OR TALKED ABOUT THIS

576
00:22:59,120 --> 00:23:01,120
THE MECHANISTIC STUDIESS, THE

577
00:23:01,120 --> 00:23:03,240
PATHOGENESIS, WHO IS CAUSING IT

578
00:23:03,240 --> 00:23:05,200
FROM PEOPLE WHO HAVE BEEN

579
00:23:05,200 --> 00:23:06,560
INFECTED MONTHS AGO WHO ARE

580
00:23:06,560 --> 00:23:07,760
STILL HAVING TROUBLE AND VERY

581
00:23:07,760 --> 00:23:10,440
CLOSELY TIED TO THIS AND PART OF

582
00:23:10,440 --> 00:23:14,280
THE RECOVERY IS A PATHOLOGY

583
00:23:14,280 --> 00:23:16,880
STUDY, IT'S AN AUTOPSY PROGRAM,

584
00:23:16,880 --> 00:23:17,760
TO DEEPLY INVESTIGATE THE

585
00:23:17,760 --> 00:23:19,920
TISSUES OF THOSE PEOPLE WHO DIED

586
00:23:19,920 --> 00:23:21,480
FOR WHATEVER REASON OR HAD COVID

587
00:23:21,480 --> 00:23:22,880
MONTHS AGO AND TRY TO FIGURE OUT

588
00:23:22,880 --> 00:23:24,640
IF THERE'S SOMETHING THAT CAN BE

589
00:23:24,640 --> 00:23:30,040
SEEN UNDER THE MICROSCOPE THAT

590
00:23:30,040 --> 00:23:31,800
ELUCIDATES WHAT IS THERE AND

591
00:23:31,800 --> 00:23:33,720
WHAT IS THE PERSISTENT SYMPTOM.

592
00:23:33,720 --> 00:23:38,520
THE ENROLLMENT IN THE COHORT

593
00:23:38,520 --> 00:23:39,800
STUDY IS REALLY BEEN QUITE

594
00:23:39,800 --> 00:23:41,560
AMAZING OVER THE LAST FEW

595
00:23:41,560 --> 00:23:43,360
MONTHS, WE'RE NOW OVER 8000

596
00:23:43,360 --> 00:23:47,280
PEOPLE, THIS IS THE LARGEST

597
00:23:47,280 --> 00:23:49,200
PERSON, PATIENT TO PERSON POST

598
00:23:49,200 --> 00:23:53,320
COVID STUDY. 

599
00:23:53,320 --> 00:23:55,440
WE HAVE GOOD DISTRIBUTION OF

600
00:23:55,440 --> 00:23:56,840
COURSE OUR DEMOGRAPHICS, OF

601
00:23:56,840 --> 00:23:57,920
COURSE ALSO THE AUTOPSIES

602
00:23:57,920 --> 00:23:59,600
PROGRAM IS PROCEEDING AND HAS

603
00:23:59,600 --> 00:24:01,200
OVER 50 CASES OF PEOPLE WHO HAVE

604
00:24:01,200 --> 00:24:03,120
DIED AND THE TISSUE HAVE BEEN

605
00:24:03,120 --> 00:24:05,280
DONATED FOR TD STUDY TO TRY TO

606
00:24:05,280 --> 00:24:06,760
LOOK UNDER THE MICROSCOPE AND

607
00:24:06,760 --> 00:24:09,840
SEE WHAT IS GOING ON FOR THESE

608
00:24:09,840 --> 00:24:10,400
PERSISTENT SYMPTOMS.

609
00:24:10,400 --> 00:24:14,840
WE ARE NOW ALSO WORKING ON

610
00:24:14,840 --> 00:24:16,720
THRINICAL TRIALS, CONCEPTS AND

611
00:24:16,720 --> 00:24:18,720
MASTER PROTOCOLS, TEST DIFFERENT

612
00:24:18,720 --> 00:24:19,800
SYMPTOMATIC TREATMENTS IN NEEZ

613
00:24:19,800 --> 00:24:21,800
KIND OF MAJOR SYMPTOM CLUSTERS.

614
00:24:21,800 --> 00:24:24,760
THIS IS NOT ALL INCLUSIVE BUT

615
00:24:24,760 --> 00:24:26,160
THE MAJOR PLUSES AS IT TURNS OUT

616
00:24:26,160 --> 00:24:31,000
IN THE LITERATURE AND ALSO IN

617
00:24:31,000 --> 00:24:32,680
RECOVER OR PEOPLE WHO HAVE

618
00:24:32,680 --> 00:24:34,600
TROUBLE WITH AUTONOMIC

619
00:24:34,600 --> 00:24:36,280
DISORDERS, PARTICULARLY THOSE

620
00:24:36,280 --> 00:24:36,960
[INDISCERNIBLE] TACHYCARDIA

621
00:24:36,960 --> 00:24:39,640
SYNDROME, PEOPLE WHO HAVE

622
00:24:39,640 --> 00:24:45,280
TROUBLE WITH EXECUTIVE FUNCTION,

623
00:24:45,280 --> 00:24:47,120
MEMORY, AWMTION CALLED BRAIN

624
00:24:47,120 --> 00:24:49,440
FOG, PEOPLE WHO HAVE TROUBLE

625
00:24:49,440 --> 00:24:51,040
WITH SLEEP, RELATED TO SLEEP OR

626
00:24:51,040 --> 00:24:53,560
FATIGUE WHICH IS THE MOST COMMON

627
00:24:53,560 --> 00:24:54,720
SYMPTOM IN LONG ASHING.

628
00:24:54,720 --> 00:24:58,800
THAT'S ASSOCIATED OF COURSE WITH

629
00:24:58,800 --> 00:25:01,400
MORE EXERCISE INTOLERANT AND

630
00:25:01,400 --> 00:25:03,040
SOME PEOPLE POST EXERTION

631
00:25:03,040 --> 00:25:09,680
MALAISE, A FEATURE THAT'S REALLY

632
00:25:09,680 --> 00:25:10,600
QUITE--SIGNATURE FEATURE HAS

633
00:25:10,600 --> 00:25:16,400
BEEN SEEN IN SOME PEOPLE WITH

634
00:25:16,400 --> 00:25:18,760
POST COVID SYNDROMES AS WELL.

635
00:25:18,760 --> 00:25:20,560
NOW BESIDES THE SYMPTOMATIC

636
00:25:20,560 --> 00:25:21,800
THERAPY, FIND OUT HOW BEST TO

637
00:25:21,800 --> 00:25:23,080
TREAT SYMPTOMS AND PATIENTS ALSO

638
00:25:23,080 --> 00:25:24,200
LOOKING FOR TREATMENTS THAT

639
00:25:24,200 --> 00:25:25,720
COULD POTENTIALLY GET AT THE

640
00:25:25,720 --> 00:25:27,720
UNDERLYING BIOLOGY THAT'S

641
00:25:27,720 --> 00:25:28,760
DRIVING THIS CONDITION WHETHER

642
00:25:28,760 --> 00:25:34,400
IT'S THE VIRAL PERSISTENCE AND

643
00:25:34,400 --> 00:25:36,680
TISSUE IN THE BODY, OR

644
00:25:36,680 --> 00:25:38,200
REGULATION AND TRIGGERED BY

645
00:25:38,200 --> 00:25:40,040
ACUTE REGULATION AND WAS NEVER

646
00:25:40,040 --> 00:25:40,520
REALLY NORMALIZED.

647
00:25:40,520 --> 00:25:42,280
NOW THIS IS VERY, VERY

648
00:25:42,280 --> 00:25:43,080
PRELIMINARY BUT I WANTED TO

649
00:25:43,080 --> 00:25:46,600
THROW IT OUT AS A KIND OF A

650
00:25:46,600 --> 00:25:47,240
POTENTIAL HOME RUN.

651
00:25:47,240 --> 00:25:50,320
SHOULD IT BE VALIDATED, BUT

652
00:25:50,320 --> 00:25:54,160
RECENTLY, THERE HAVE BEEN 2

653
00:25:54,160 --> 00:25:56,360
REPORTS MAYBE OTHERS OF

654
00:25:56,360 --> 00:25:58,480
CIRCULATING EXTRA CELLULAR

655
00:25:58,480 --> 00:26:04,320
VESICLES THAT CONTAIN ANTIGENS

656
00:26:04,320 --> 00:26:06,160
OF SARS COV VIRUS AND THOSE WHO

657
00:26:06,160 --> 00:26:08,280
HAVE POST ACUTE SUPPLY OF COVID.

658
00:26:08,280 --> 00:26:09,640
FOR THESES VESICLES ARE TINY

659
00:26:09,640 --> 00:26:11,840
LIPIDS THAT ARE RELEASED FROM

660
00:26:11,840 --> 00:26:13,560
ALL DIFFERENT CELL TYPES AND

661
00:26:13,560 --> 00:26:15,720
INTO THE BLOOD STREAM AND HAS

662
00:26:15,720 --> 00:26:17,200
BEEN FOUND IS WE CAN SEE IN THE

663
00:26:17,200 --> 00:26:20,200
TOP PANEL THAT THE EQUAL AND

664
00:26:20,200 --> 00:26:22,320
POST ACUTE SEQUELA IN THIS

665
00:26:22,320 --> 00:26:30,440
STUDY, THE RED DOTS ARE HAVE

666
00:26:30,440 --> 00:26:32,600
HARBOR, DESPITE THE PROTEINS IN

667
00:26:32,600 --> 00:26:34,120
THIS YELLOW BOX, OVER MONTHS

668
00:26:34,120 --> 00:26:35,560
AFTER THEIR ACUTE INFECTION,

669
00:26:35,560 --> 00:26:38,520
VERSUS THOSE WHO HAVE

670
00:26:38,520 --> 00:26:39,840
CONVALESCENT, AND GOOD RECOVERY

671
00:26:39,840 --> 00:26:42,520
IN BLUE DO NOT SHOW THIS

672
00:26:42,520 --> 00:26:48,480
CONSISTENT SPEAK PROTEIN IN THE

673
00:26:48,480 --> 00:26:48,960
EXTRA CELLULAR VESICLE.

674
00:26:48,960 --> 00:26:52,040
SOME OF THESE PROTEINS LIKE THE

675
00:26:52,040 --> 00:26:54,520
END PROTEIN IS VERY COMMON AND

676
00:26:54,520 --> 00:26:55,920
THEN GOES AWAY OVER TIME BUT

677
00:26:55,920 --> 00:26:58,040
IT'S A SPIKE PROTEIN THAT WE'RE

678
00:26:58,040 --> 00:27:00,800
WONDERING IS A SIGN OF

679
00:27:00,800 --> 00:27:01,560
CONSISTENT VIRAL INFECTION

680
00:27:01,560 --> 00:27:03,360
SOMEWHERE IN THE BODY OR

681
00:27:03,360 --> 00:27:07,160
CONSISTENTLY RELEASE OF DAMAGED

682
00:27:07,160 --> 00:27:09,280
TISSUE WITH THE VIRAL ANTIGEN

683
00:27:09,280 --> 00:27:14,240
THAT CAN STIMULATE THE IMMUNE

684
00:27:14,240 --> 00:27:16,360
SYSTEM, SO, WHERE WE ARE NOW IS

685
00:27:16,360 --> 00:27:23,360
TRYING TO VALIDATE THESE STUDIES

686
00:27:23,360 --> 00:27:25,680
IN RECOVER COHORT AND VALIDATED

687
00:27:25,680 --> 00:27:27,200
WE'RE PLANNING AN ANTIVIRAL

688
00:27:27,200 --> 00:27:28,480
CLINICAL TRIAL IN PEOPLE WHO

689
00:27:28,480 --> 00:27:31,720
HAVE PICKED OUT BECAUSE THEY

690
00:27:31,720 --> 00:27:34,760
HAVE EVIDENCE OF THIS CONSISTENT

691
00:27:34,760 --> 00:27:36,000
ANTIGENEMIA, SO WE THINK THAT

692
00:27:36,000 --> 00:27:37,120
POST COVID SYNDROME MAY BE A

693
00:27:37,120 --> 00:27:40,840
NUMBER OF DIFFERENT THINGS AND

694
00:27:40,840 --> 00:27:43,040
SOME PEOPLE IT MAY BE AUTOIMMUNE

695
00:27:43,040 --> 00:27:45,400
OR DESREGULATION, SOME PEOPLE IT

696
00:27:45,400 --> 00:27:50,840
MAY BE DO TO VIRAL PERSISTENCE

697
00:27:50,840 --> 00:27:52,720
AND AND IF WE CAN PICK PEOPLE

698
00:27:52,720 --> 00:28:03,280
OUT WE HAVE EYE HIGH CHANCE, WE

699
00:28:03,280 --> 00:28:04,960
HAVE A CHANCE OF WORKING IN THE

700
00:28:04,960 --> 00:28:07,480
EABT VIRAL GROUP AND ALSO WE CAN

701
00:28:07,480 --> 00:28:09,360
USE THE CIRCULATING SPIKE

702
00:28:09,360 --> 00:28:10,760
PROTEIN AS A BIOMARKER OF

703
00:28:10,760 --> 00:28:12,600
SUCCESS AS A DRUG THAT IS

704
00:28:12,600 --> 00:28:14,240
EFFECTIVE AND WILL EXPECT

705
00:28:14,240 --> 00:28:18,280
DESPITE PROTEIN CAN NO LONGER BE

706
00:28:18,280 --> 00:28:22,720
DETECTABLE IN THE CIRCULATING

707
00:28:22,720 --> 00:28:22,920
BLOOD.

708
00:28:22,920 --> 00:28:26,240
SO AGAIN SO THIS IS A LOSS OF

709
00:28:26,240 --> 00:28:27,520
ASSUMPTION WHY DON'T KNOW FOR

710
00:28:27,520 --> 00:28:29,720
SURE IF ANY OF THIS WILL WORK

711
00:28:29,720 --> 00:28:33,480
OUT, WE CAN SEE THE BRIGHT LIGHT

712
00:28:33,480 --> 00:28:34,920
THERE AND THE WHOLE THING

713
00:28:34,920 --> 00:28:39,760
TOGETHER WILL REALLY HELP US TO

714
00:28:39,760 --> 00:28:50,280
ACSALEERATE AND TARGET DOWN ON

715
00:28:53,200 --> 00:28:54,080
TESTING DIFFERENT TREATMENT.

716
00:28:54,080 --> 00:28:56,080
WE ALSO RECENTLY FUNDED

717
00:28:56,080 --> 00:28:56,800
$30 MILLION AND RESEARCH

718
00:28:56,800 --> 00:29:00,440
PROJECTS AND WE ARE LOOKING AT

719
00:29:00,440 --> 00:29:01,560
MANY OTHER POTENTIAL

720
00:29:01,560 --> 00:29:02,960
PATHOPHYSIOLOGICAL MECH NVENLS

721
00:29:02,960 --> 00:29:06,520
UNDERLYING LONG COVID AND POST

722
00:29:06,520 --> 00:29:07,440
ACUTE SEQUELA OF COVID.

723
00:29:07,440 --> 00:29:08,640
YOU CAN SEE ON THE BOX ON THE

724
00:29:08,640 --> 00:29:16,160
LEFT, MANY OF THESE AREISK

725
00:29:16,160 --> 00:29:19,080
BASICALLY NEUROLOGICAL CLINICAL

726
00:29:19,080 --> 00:29:25,600
NEUROSCIENCE PROJECTS LOOKING AT

727
00:29:25,600 --> 00:29:26,720
SLEEP, NEUROVASCULAR SIGNATURES,

728
00:29:26,720 --> 00:29:32,440
P A SC RECOVERY, SPINAL FLUID,

729
00:29:32,440 --> 00:29:34,960
VASCULAR DYSFUNCTION, AUTONOMIC

730
00:29:34,960 --> 00:29:35,600
DYSFUNCTION, BUT ALSO ON THE

731
00:29:35,600 --> 00:29:39,400
RIGHT, CAN YOU SEE A NUMBER OF

732
00:29:39,400 --> 00:29:40,400
CONDITIONS THAT ARE--AFFECT

733
00:29:40,400 --> 00:29:50,960
OTHER BODY SYSTEMS AND THESE ARE

734
00:29:51,880 --> 00:29:53,040
ALSO AND LOOKING AT DIABETES, IT

735
00:29:53,040 --> 00:29:54,600
LOOKS LIKE IT IS INCREASED IN

736
00:29:54,600 --> 00:29:56,360
THOSE PEOPLE WHO HAVE COVID AND

737
00:29:56,360 --> 00:29:58,680
SO THAT IS WHEN METABOLIC

738
00:29:58,680 --> 00:29:59,760
DISORDER THAT'S REALLY BEEN

739
00:29:59,760 --> 00:30:04,440
HIGHLIGHTED AND MOST OF THE

740
00:30:04,440 --> 00:30:06,200
EPIDEMIOLOGICAL STUDIES SO LOOK

741
00:30:06,200 --> 00:30:08,680
AT THE METABOLIC SEQUELA AND I

742
00:30:08,680 --> 00:30:10,760
WANTED TO POINT OUT THAT SOME OF

743
00:30:10,760 --> 00:30:13,000
THE NONHUMAN PRIMATES BECAUSE

744
00:30:13,000 --> 00:30:14,360
THEY REALLY CAN'T REPRODUCE

745
00:30:14,360 --> 00:30:17,920
WHAT'S HAPPENING ON YOUR END AND

746
00:30:17,920 --> 00:30:20,160
RODENTS AND THE INSTANCES AND

747
00:30:20,160 --> 00:30:21,000
NONHUMAN PRIMATES IS REALLY

748
00:30:21,000 --> 00:30:22,000
IMPORTANT AND THAT BRINGS ME TO

749
00:30:22,000 --> 00:30:23,640
THE NEXT POINT I WANTED TO MAKE

750
00:30:23,640 --> 00:30:27,000
THIS IS THAT WE'RE SEEING IN A

751
00:30:27,000 --> 00:30:28,120
SHORTER DENYING HUMAN PRIMATES

752
00:30:28,120 --> 00:30:29,520
AND AVAILABLE FOR RESEARCH IN

753
00:30:29,520 --> 00:30:31,240
THE U.S., THE NEED FOR TESTING

754
00:30:31,240 --> 00:30:35,480
COVID TREATMENTS AND VACCINES

755
00:30:35,480 --> 00:30:37,440
AND TD DEMAND FOR THE MODELS AND

756
00:30:37,440 --> 00:30:39,240
THIS WILL PROBABLY BE OUTPACE

757
00:30:39,240 --> 00:30:42,320
THE RESOURCE SUPPLY IN THE U.S.

758
00:30:42,320 --> 00:30:46,240
AS YOU KNOW NEUROSCIENCE

759
00:30:46,240 --> 00:30:46,960
INCREASINGLY FOR PRIMATES

760
00:30:46,960 --> 00:30:47,720
INCLUDING MONOSETS THAT BRIDGE

761
00:30:47,720 --> 00:30:48,840
OUR UNDERSTANDING OF WHAT WE CAN

762
00:30:48,840 --> 00:30:55,600
DO IN THE MOUSE TO REALLY MAKER

763
00:30:55,600 --> 00:30:56,800
REALLY GOOD HYPOTHESIS TO BE

764
00:30:56,800 --> 00:30:58,160
TESTED ABOUT WHAT HAPPENS IN

765
00:30:58,160 --> 00:31:00,400
HUMANS TO DO THAT BRIDGE, WE

766
00:31:00,400 --> 00:31:03,000
REALLY NEED TO EXAMINE THOSE

767
00:31:03,000 --> 00:31:06,560
KIND OF INTERVENTIONS IN THE

768
00:31:06,560 --> 00:31:09,840
NONHUMAN PRIMATE. 

769
00:31:09,840 --> 00:31:11,520
THE BRAIN INITIATIVE AND ALL

770
00:31:11,520 --> 00:31:12,760
THESE RESOURCES AND ALL OF US AS

771
00:31:12,760 --> 00:31:15,280
WE DO WITH ALL OF OUR ANIMALS,

772
00:31:15,280 --> 00:31:18,240
ARE REALLY STRONG FOCUS ON

773
00:31:18,240 --> 00:31:19,280
SHARING THE COMPASSIONATE AND

774
00:31:19,280 --> 00:31:20,920
ETHICAL CARE OF ANIMALS.

775
00:31:20,920 --> 00:31:23,080
THE NATIONAL ACOOED ME OF

776
00:31:23,080 --> 00:31:24,320
SCIENCES ENGINEERING AND

777
00:31:24,320 --> 00:31:26,040
MEDICINE IS CURRENTLY EXAMINING

778
00:31:26,040 --> 00:31:27,960
THE CURRENT ROLE OF FUTURE AND

779
00:31:27,960 --> 00:31:30,760
NEED OF NONHUMAN PRIMATES IN

780
00:31:30,760 --> 00:31:31,400
BIOMEDICAL RESEARCH.

781
00:31:31,400 --> 00:31:34,960
WE LOOK FORWARD TO THEIR REPORT;

782
00:31:34,960 --> 00:31:39,440
I WANT TO SWITCH NOW TO ALS,

783
00:31:39,440 --> 00:31:40,600
STRATEGIC PLANNING.

784
00:31:40,600 --> 00:31:42,120
AS WE MENTIONED IN THE PAST, WE

785
00:31:42,120 --> 00:31:45,120
PUT TOGETHER WORKING GROUP OF

786
00:31:45,120 --> 00:31:46,520
COUNCIL CO-LED BY DR. ROBERT

787
00:31:46,520 --> 00:31:51,840
BROWN, ON OUR COUNCIL AND

788
00:31:51,840 --> 00:31:53,920
DR. RITA SATTLER, AND ALSO AARON

789
00:31:53,920 --> 00:31:55,800
GITLER IS ALSO ON THE ALONG WITH

790
00:31:55,800 --> 00:31:57,520
PERSONS LIVING WITH ALS AND

791
00:31:57,520 --> 00:32:00,960
CAREGIVERS TO TAKE CARE OF THOSE

792
00:32:00,960 --> 00:32:02,440
SUFFERING WITH ALS.

793
00:32:02,440 --> 00:32:04,720
AND THE GOAL OF THE STRATEGIC

794
00:32:04,720 --> 00:32:05,960
PLANNING ACCELERATE RESEARCH ON

795
00:32:05,960 --> 00:32:09,240
THE BIOLOGY BEHIND ALS, AND

796
00:32:09,240 --> 00:32:11,160
QUICKLY AS WE CAN TRANSLATE

797
00:32:11,160 --> 00:32:14,680
FUNDAMENTAL RESEARCH AND

798
00:32:14,680 --> 00:32:15,320
THERAPIES OPTIMIZING CLINICAL

799
00:32:15,320 --> 00:32:17,840
RESEARCH AS YOU KNOW, ALS IS THE

800
00:32:17,840 --> 00:32:18,960
TRAGEC THIS MORNING AND THE

801
00:32:18,960 --> 00:32:21,560
AVERAGE LIFE SPAN AND TRACKING

802
00:32:21,560 --> 00:32:24,280
AND DIFFERENT DIAGNOSES FOR THE

803
00:32:24,280 --> 00:32:26,080
ILLNESS IS ONLY A FEW OF THE

804
00:32:26,080 --> 00:32:27,960
YEAR SO THERE'S A TREMENDOUSLY

805
00:32:27,960 --> 00:32:28,880
END AMOUNT OF URGENCY TO GET AT

806
00:32:28,880 --> 00:32:31,680
THE BOTTOM OF THIS CONDITION AND

807
00:32:31,680 --> 00:32:33,880
TO SEE IF ANY OF THE DISCOVERIES

808
00:32:33,880 --> 00:32:36,760
CAN BE BROUGHT TO THE POINT THAT

809
00:32:36,760 --> 00:32:39,880
WE CAN TEST IT WITH THE ABILITY

810
00:32:39,880 --> 00:32:44,680
TO PREVENT DISABILITY AND DEATH

811
00:32:44,680 --> 00:32:44,960
WITH ALS.

812
00:32:44,960 --> 00:32:49,520
SO IS IT STARTED OUT WITH PUBLIC

813
00:32:49,520 --> 00:32:50,960
INFORMATION WITH OVER 300

814
00:32:50,960 --> 00:32:52,200
RESPONSES, THEY ARE DEVELOPING

815
00:32:52,200 --> 00:32:53,880
DRAFT PILOT PROJECTORRITIES AND

816
00:32:53,880 --> 00:32:56,080
WE APPLY AREAS, BASIC SCIENCE

817
00:32:56,080 --> 00:32:58,240
ALS, TRANSLATIONAL SCIENCE OF

818
00:32:58,240 --> 00:32:59,680
ALS, CLINICAL SCIENCE, QUALITY

819
00:32:59,680 --> 00:33:01,280
OF LIFE, QUALITY OF LIFE FOR

820
00:33:01,280 --> 00:33:03,800
THOSE SUFFERING AND HOW DOES IT

821
00:33:03,800 --> 00:33:04,800
ALL PARTNERSHIP AND

822
00:33:04,800 --> 00:33:07,560
COLLABORATIONS TO ADVANCE THE

823
00:33:07,560 --> 00:33:09,360
SCIENCE MORE QUICKLY.

824
00:33:09,360 --> 00:33:11,000
THIS WILL ALL BE COMING TO A

825
00:33:11,000 --> 00:33:13,920
HEAD AT THE OCTOBER 26th,

826
00:33:13,920 --> 00:33:15,680
27th PUBLIC WORKSHOP, THE

827
00:33:15,680 --> 00:33:17,720
PRIORITIES THAT WE DISCUSSED AND

828
00:33:17,720 --> 00:33:19,000
THE OPPORTUNITIES FOR DISCUSSION

829
00:33:19,000 --> 00:33:21,000
AND COMMENTS, TELL BE A PUBLIC

830
00:33:21,000 --> 00:33:22,400
COMMENT PERIOD, AND IT WILL HELP

831
00:33:22,400 --> 00:33:25,760
US TO REVISE AND HELP US REVISE

832
00:33:25,760 --> 00:33:28,280
THE PRIORITIES TO DEVELOP A

833
00:33:28,280 --> 00:33:29,400
FORMAL SET OF RECOMMENDATIONS

834
00:33:29,400 --> 00:33:31,560
THAT WILL COME TO THE NINDS,

835
00:33:31,560 --> 00:33:34,120
COUNCIL IN FEBRUARY OF 2023, OUR

836
00:33:34,120 --> 00:33:34,440
NEXT MEETING.

837
00:33:34,440 --> 00:33:36,440
SO LOOKING FORWARD TO THIS, I

838
00:33:36,440 --> 00:33:37,680
WANT TO THANK ALL THE FOLK WHO

839
00:33:37,680 --> 00:33:40,280
IS HAVE BEEN WORKING SO HARTD

840
00:33:40,280 --> 00:33:42,160
FOR THE STRATEGIC PLAN.

841
00:33:42,160 --> 00:33:44,320
AS YOU ALSO KNOW AND WE'VE

842
00:33:44,320 --> 00:33:48,160
MENTIONED AT THE LAST COUNCIL,

843
00:33:48,160 --> 00:33:50,840
THAT THE PRESIDENT IN DECEMBER

844
00:33:50,840 --> 00:33:54,440
SIGNED THE ACT FOR ALS BILL AND

845
00:33:54,440 --> 00:33:56,240
PROVISION DIRECTORY RELEVANT TO

846
00:33:56,240 --> 00:33:58,320
NIH INSTRUCTS NIH TO ESTABLISH A

847
00:33:58,320 --> 00:33:59,960
PROGRAM TO FUND GRANTS FOR

848
00:33:59,960 --> 00:34:02,160
SCIENTIFIC RESEARCH ON ALS THAT

849
00:34:02,160 --> 00:34:03,080
UTILIZE EXPABDED ACCESS DATA

850
00:34:03,080 --> 00:34:07,120
FROM INDIVIDUALS THAT ARE NOT

851
00:34:07,120 --> 00:34:08,760
OTHERWISE ELIGIBLE FOR

852
00:34:08,760 --> 00:34:09,520
RANDOMIZED CONTROL TRIALS.

853
00:34:09,520 --> 00:34:11,840
THE PROGRAM IS LIMITED TO TEST

854
00:34:11,840 --> 00:34:13,440
ASSETS THAT ARE CURRENTLY IN

855
00:34:13,440 --> 00:34:14,960
PHASE 3 CLINICAL SITES SPONSORED

856
00:34:14,960 --> 00:34:18,480
BY A SMALL BUSINESS CONCERN.

857
00:34:18,480 --> 00:34:18,960
CONGRESS APPROPRIATED

858
00:34:18,960 --> 00:34:23,400
$25 MILLION TO THE NIH, NINDS

859
00:34:23,400 --> 00:34:25,400
WAS CHARGED WITH SOLICITING THE

860
00:34:25,400 --> 00:34:27,480
GRANTS, REVIEWING THE GRANTS AND

861
00:34:27,480 --> 00:34:30,040
DEVELOPING A FUNDING PLAN THAT

862
00:34:30,040 --> 00:34:31,640
WILL BE DISCUSSED WITH COUNCIL

863
00:34:31,640 --> 00:34:32,200
TOMORROW.

864
00:34:32,200 --> 00:34:35,160
THE BILL WILL ALSO ESTABLISHES A

865
00:34:35,160 --> 00:34:37,280
PUBLIC-PRIVATE PARTNERSHIP WITH

866
00:34:37,280 --> 00:34:40,360
THE FDA AND NIH TO FOCUS ON

867
00:34:40,360 --> 00:34:42,560
ADVANCING REGULATORY SUBSTANCE

868
00:34:42,560 --> 00:34:43,880
AND ACCELERATING SCIENCE

869
00:34:43,880 --> 00:34:45,320
RESEARCH THAT WOULD LEAD TO

870
00:34:45,320 --> 00:34:47,040
EFFECTIVE TREATMENTS FOR ALS,

871
00:34:47,040 --> 00:34:47,640
REALLY LOOKING FORWARD TO

872
00:34:47,640 --> 00:34:49,160
WORKING AND WE HAVE BEEN WORKING

873
00:34:49,160 --> 00:34:51,080
WITH THE FDA TO DEVELOP THE

874
00:34:51,080 --> 00:34:52,480
PUBLIC AND PRIVATE PARTNERSHIP

875
00:34:52,480 --> 00:34:59,600
THAT I THINK WILL BE QUITE

876
00:34:59,600 --> 00:35:00,200
EXCITING AND IMPORTANT.

877
00:35:00,200 --> 00:35:03,040
NEXT I WANT TO JUMP INTO THE

878
00:35:03,040 --> 00:35:05,240
CHRONIC FATIGUE SYNDROME, AS YOU

879
00:35:05,240 --> 00:35:07,160
BE THE COUNCIL WORKING GROUP

880
00:35:07,160 --> 00:35:08,280
DEVELOPED SOME RECOMMENDATIONS

881
00:35:08,280 --> 00:35:14,480
TO NIH AND TO NINDS IN 2019 THAT

882
00:35:14,480 --> 00:35:16,280
WAS BEFORE COVID AND THE

883
00:35:16,280 --> 00:35:18,520
CONDITION REMAINS AS MYSTERIOUS,

884
00:35:18,520 --> 00:35:21,960
ACCEPT AFTER COVID, THERE ARE

885
00:35:21,960 --> 00:35:22,880
NOW MILLIONS OF PEOPLE MORE WITH

886
00:35:22,880 --> 00:35:26,200
MANY OF THE SYMPTOMS OF ME/CFS,

887
00:35:26,200 --> 00:35:28,560
SO I THINK THIS REALLY, COVID

888
00:35:28,560 --> 00:35:30,880
REALLY ESTABLISHED THE

889
00:35:30,880 --> 00:35:32,120
BIOLOGICAL BASIS FOR ANYONE WHO

890
00:35:32,120 --> 00:35:35,080
WAS DOUBTING ABOUT THE CAUSE OF

891
00:35:35,080 --> 00:35:37,560
ME/CFS, AND ALSO THE

892
00:35:37,560 --> 00:35:39,320
INTERSECTION WITH COVID, LONG

893
00:35:39,320 --> 00:35:44,160
COVID SYNDROME AND THE RESEARCH

894
00:35:44,160 --> 00:35:45,360
ARMAMENTARIUM THAT IS BEING

895
00:35:45,360 --> 00:35:46,680
BROUGHT TO UNDERSTAND THAT

896
00:35:46,680 --> 00:35:48,120
CONDITION WE HOPE WILL HAVE

897
00:35:48,120 --> 00:35:52,400
SIGNIFICANT EFFECTS ON NIH'S

898
00:35:52,400 --> 00:35:58,160
RESEARCH ON ME/CFS AS INCLUDING

899
00:35:58,160 --> 00:36:00,440
LONG COVID, BUT NOT COMPLYING TO

900
00:36:00,440 --> 00:36:01,760
LONG COVID BUT WE WOULD LIKE TO

901
00:36:01,760 --> 00:36:04,240
DO THE LARGEST PLANNING PROCESS,

902
00:36:04,240 --> 00:36:09,000
WORKING WITH COUNCIL MEMBERS AND

903
00:36:09,000 --> 00:36:10,040
ME/CFS INVESTIGATORS, ADVOCATES

904
00:36:10,040 --> 00:36:13,560
AND PROVIDERRERS AND INDIVIDUALS

905
00:36:13,560 --> 00:36:15,200
WITH ME-/CFS, WITH THE RESEARCH

906
00:36:15,200 --> 00:36:16,360
STRAY JECTORY TEENINGIC PLAN AND

907
00:36:16,360 --> 00:36:18,880
COME UP WITH A GOAL WHICH OF

908
00:36:18,880 --> 00:36:22,840
WOULD BE THE ME/CFS RESEARCH

909
00:36:22,840 --> 00:36:26,560
TRANSLATIONAL RESEARCH STRATEGIC

910
00:36:26,560 --> 00:36:28,160
PLAN MUCH LIKE WE TALKED ABOUT

911
00:36:28,160 --> 00:36:29,000
A, WELL S.

912
00:36:29,000 --> 00:36:31,280
AND JUST TO WRAP UP, I WANT TO

913
00:36:31,280 --> 00:36:34,000
TALK ABOUT THE LACK OF IN-PERSON

914
00:36:34,000 --> 00:36:36,320
MEETING DUE TO COVID, WE'VE HAD

915
00:36:36,320 --> 00:36:37,400
GREAT WORKSHOPS, BRAIN

916
00:36:37,400 --> 00:36:40,760
INITIATIVE MEETING WAS QUITE

917
00:36:40,760 --> 00:36:42,160
FANTASTIC, OPENING UP TO MORE

918
00:36:42,160 --> 00:36:43,160
PEOPLE THAN WE'VE EVER SEEN

919
00:36:43,160 --> 00:36:45,720
BEFORE AND PAIN AND CONSORTIUM

920
00:36:45,720 --> 00:36:48,240
SYMPOSIA, AND THE INVESTIGATOR

921
00:36:48,240 --> 00:36:51,160
INITTIAIATED MEETING AND

922
00:36:51,160 --> 00:36:52,680
WORKSHOP WITH NCID, AND WE HAVE

923
00:36:52,680 --> 00:36:55,240
A WORKSHOP THAT WAS FANTASTIC A

924
00:36:55,240 --> 00:37:00,360
COUPLE WEEKS AGO, AND

925
00:37:00,360 --> 00:37:01,040
[INDISCERNIBLE] WAS BETTER, I

926
00:37:01,040 --> 00:37:02,280
DON'T KNOW HOW WE'RE GOING TOW

927
00:37:02,280 --> 00:37:04,280
DO IT NEXT YEAR BUT I'M SURE WE

928
00:37:04,280 --> 00:37:12,080
WILL, THAT WAS IN JULY AND

929
00:37:12,080 --> 00:37:17,920
WORKED TOGETHER WITH OVER 70

930
00:37:17,920 --> 00:37:18,440
DIFFERENT DISEASE GROUPS.

931
00:37:18,440 --> 00:37:20,600
SO LOOTS GOING ON, LOTS OF

932
00:37:20,600 --> 00:37:21,560
SCIENTIFIC DISCUSSION, LOTS OF

933
00:37:21,560 --> 00:37:24,080
GREAT RESEARCH BEING PUBLISHED

934
00:37:24,080 --> 00:37:26,000
AND SO WE'RE REALLY PROUD OF OUR

935
00:37:26,000 --> 00:37:32,080
GRANTEES AND OUR STAFF WORKING

936
00:37:32,080 --> 00:37:33,560
THROUGH CONDITIONS THAT HAVE

937
00:37:33,560 --> 00:37:36,880
COME UP US DUE TO THE PANDEMIC.

938
00:37:36,880 --> 00:37:38,160
THE UPCOMING COUNCIL MEETING

939
00:37:38,160 --> 00:37:40,000
THAT WE MENTIONED, WE'RE LOOKING

940
00:37:40,000 --> 00:37:41,280
FOR THE OPTIMAL BALANCE BETWEEN

941
00:37:41,280 --> 00:37:43,200
VIRTUAL HYBRID AND IN-PERSON.

942
00:37:43,200 --> 00:37:45,600
WE HAVE DECIDED THAT THE JANUARY

943
00:37:45,600 --> 00:37:47,640
MEETING OUR NEXT MEETING BECAUSE

944
00:37:47,640 --> 00:37:50,160
OF THE WEATHER ISSUES WILL BE

945
00:37:50,160 --> 00:37:51,800
REMOTE, OUR MAY MEETING WILL BE

946
00:37:51,800 --> 00:37:53,240
IN PERSON AND THEN WE HAVEN'T

947
00:37:53,240 --> 00:37:54,720
DECIDED WHAT WE WANT TO DO IN

948
00:37:54,720 --> 00:37:57,160
SEPTEMBER, WHETHER WE WANT TO GO

949
00:37:57,160 --> 00:37:59,720
HYBRID OR VIRDUAL OR IN PERSON.

950
00:37:59,720 --> 00:38:01,120
--VIRTUAL OR IN PERSON, SO LOOK

951
00:38:01,120 --> 00:38:02,320
FORWARD TO HOW THAT GOES ALONG

952
00:38:02,320 --> 00:38:09,960
AND THIS ISSUE IS, I THINK

953
00:38:09,960 --> 00:38:13,200
FACING ALL ENDEAVORS, ACADEMIC,

954
00:38:13,200 --> 00:38:14,480
SCIENTIFIC, NINDS STAFF IS

955
00:38:14,480 --> 00:38:16,360
PHASING OPTIMIZE HOW TO WORK IN

956
00:38:16,360 --> 00:38:17,040
THIS ENVIRONMENT AS WELL.

957
00:38:17,040 --> 00:38:20,080
SO WITH THEY WANT TO THANK YOU

958
00:38:20,080 --> 00:38:20,880
FOR YOUR ATTENTION.

959
00:38:20,880 --> 00:38:22,480
IT'S BEEN A PLEASURE TO DELIVER

960
00:38:22,480 --> 00:38:26,720
THE WORK THAT WAS SO MANY STAFF

961
00:38:26,720 --> 00:38:28,040
AND GRANTEES, AND HAPPY TO

962
00:38:28,040 --> 00:38:37,280
ANSWER ANY QUESTIONS, THANK YOU

963
00:38:37,280 --> 00:38:39,840
VERY MUCH.

964
00:38:39,840 --> 00:38:40,200
GREAT.

965
00:38:40,200 --> 00:38:42,000
SO HAPPY TO ANSWER QUESTION FIST

966
00:38:42,000 --> 00:38:49,600
ANYBODY HAS ANY, HAPPY TO TRY TO

967
00:38:49,600 --> 00:38:50,280
FIELD THEM.

968
00:38:50,280 --> 00:38:51,760
JUST A SLICE OF WHAT'S HAPPENED

969
00:38:51,760 --> 00:38:53,320
SINCE OUR LAST MEETING BUT

970
00:38:53,320 --> 00:38:55,280
EVERYBODY'S BEEN PRETTY BUSY.

971
00:38:55,280 --> 00:38:57,880
LOTS OF STUFF GOING ON, LOTS OF

972
00:38:57,880 --> 00:38:58,840
OTHER THINGS WE COULD HAVE

973
00:38:58,840 --> 00:39:03,920
TALKED ABOUT AS WELL.

974
00:39:03,920 --> 00:39:06,400
OKAY, I THINK--OH, THERE'S TOM.

975
00:39:06,400 --> 00:39:08,640
>> HELLO WALTER, I'M SURE

976
00:39:08,640 --> 00:39:10,040
EVERYONE'S EAGERLY ANTICIPATING

977
00:39:10,040 --> 00:39:12,240
ARP A-H AND IT LOOKS LIKE FROM

978
00:39:12,240 --> 00:39:16,680
THIS THAT IT'S SORT OF IN

979
00:39:16,680 --> 00:39:19,960
SUSPENDED ANIMATION UNTIL THIS

980
00:39:19,960 --> 00:39:21,240
THERE'S A FULL-TIME DIRECTOR,

981
00:39:21,240 --> 00:39:23,600
WAS THAT THE APPROPRIATE TAKE

982
00:39:23,600 --> 00:39:24,800
HOME?

983
00:39:24,800 --> 00:39:26,440
>> YEAH, THAT'S TRUE, THE
THING

984
00:39:26,440 --> 00:39:29,200
ABOUT DARPA IS THAT IT'S THE

985
00:39:29,200 --> 00:39:31,320
SCIENTIFIC PEOPLE THEY HIRE THAT

986
00:39:31,320 --> 00:39:33,240
DETERMINE WHERE THE AGENCY GOES,

987
00:39:33,240 --> 00:39:34,760
SO IT'S NOT LIKE US, WHERE, YOU

988
00:39:34,760 --> 00:39:36,400
KNOW WHERE WE GO DEPENDS A LOT

989
00:39:36,400 --> 00:39:38,640
ON THE GRANTS THAT COME IN, YOU

990
00:39:38,640 --> 00:39:40,520
KNOW IT'S REALLY TOP DOWN, SO

991
00:39:40,520 --> 00:39:44,360
WITHOUT A TOP, YOU KNOW SCIENCE

992
00:39:44,360 --> 00:39:46,200
PERSON THEY REALLY CAN'T MOVE IN

993
00:39:46,200 --> 00:39:48,440
THAT DIRECTION YET.

994
00:39:48,440 --> 00:39:49,560
THE ACTING IS REALLY GOOD

995
00:39:49,560 --> 00:39:51,960
SCIENTIST WITH EXPERIENCE AT

996
00:39:51,960 --> 00:39:55,000
DARPA AND ARP A-H BUT HE'S NOT

997
00:39:55,000 --> 00:39:57,000
IN THE HEALTH SPACE SO WE CAN'T

998
00:39:57,000 --> 00:39:58,440
REALLY HELP ON THE SCIENCE SIDE

999
00:39:58,440 --> 00:40:08,360
BUT HE'S WORKING TO TRY AND

1000
00:40:08,360 --> 00:40:09,080
DEVELOP THE INFRASTRUCTURE.

1001
00:40:09,080 --> 00:40:09,920
I MEAN A LOT OF PEOPLE ARE

1002
00:40:09,920 --> 00:40:11,720
TRYING TO FIGURE OUT HOW TO GET

1003
00:40:11,720 --> 00:40:15,720
THEIR TOPICS TAKEN UP BY ARP A-H

1004
00:40:15,720 --> 00:40:18,600
AND NOBODY HAS A CLUE YET EXCEPT

1005
00:40:18,600 --> 00:40:20,200
WE DO KNOW IS THAT THEY PROBABLY

1006
00:40:20,200 --> 00:40:21,680
DON'T WANT IT COMING OUTED OF

1007
00:40:21,680 --> 00:40:23,640
NIH, THEY WANT THE IDEAS TO BE

1008
00:40:23,640 --> 00:40:27,120
COMING FROM A DIFFERENT

1009
00:40:27,120 --> 00:40:29,080
DIRECTION, CERTAINLY THE

1010
00:40:29,080 --> 00:40:30,640
CRITICISM HAS BEEN OVER THE LAST

1011
00:40:30,640 --> 00:40:32,520
COUPLE OF MONTHS THAT THEY DON'T

1012
00:40:32,520 --> 00:40:35,040
WANT THIS TO BE AN EXTENSION OF

1013
00:40:35,040 --> 00:40:36,240
THE NIH DIRECTORS, SO PEOPLE ASK

1014
00:40:36,240 --> 00:40:39,040
ME TO HELP, I THINK--I THINK IF

1015
00:40:39,040 --> 00:40:44,280
I TRY IT'LL BACK FIRE.

1016
00:40:44,280 --> 00:40:44,760
TIM?

1017
00:40:44,760 --> 00:40:46,160
>> WALTER THIS IS A POLICY

1018
00:40:46,160 --> 00:40:47,480
QUESTION RELATED TO JUST

1019
00:40:47,480 --> 00:40:48,920
LISTENING TO THE EFFORTS THAT

1020
00:40:48,920 --> 00:40:52,440
BOB BROWN AND AARON DID FOR THE

1021
00:40:52,440 --> 00:40:54,160
ALS SORT OF STRATEGIC PLANNING.

1022
00:40:54,160 --> 00:40:56,680
WELL THE'S ASSUME A YEAR OR NOW

1023
00:40:56,680 --> 00:40:57,600
OR WHATEVER, DECISION TO

1024
00:40:57,600 --> 00:40:59,240
IMPLEMENT MANY OF THE THINGS

1025
00:40:59,240 --> 00:41:01,080
THEY RECOMMENDED, DO YOU

1026
00:41:01,080 --> 00:41:02,800
ANTICIPATE, SO IS THAT GOING TO

1027
00:41:02,800 --> 00:41:05,760
BE NEW FUNDING EFFORTS SO CARVED

1028
00:41:05,760 --> 00:41:06,880
OUT OF EXISTING BUDGETS OR DO

1029
00:41:06,880 --> 00:41:09,840
YOU TRY TO GET NEW MONEY TO FUND

1030
00:41:09,840 --> 00:41:13,560
THESE NEW INITIATIVES? 

1031
00:41:13,560 --> 00:41:20,240
YOU'RE ON MUTE. 

1032
00:41:20,240 --> 00:41:20,520
STILL MUTE.

1033
00:41:20,520 --> 00:41:23,760
>> STILL MUTE. 

1034
00:41:23,760 --> 00:41:24,520
HOW ABOUT NOW?

1035
00:41:24,520 --> 00:41:25,000
OKAY.

1036
00:41:25,000 --> 00:41:27,920
>> I'M ON THE ROOM MIC SO
I

1037
00:41:27,920 --> 00:41:29,520
DON'T HAVE CONTROL.

1038
00:41:29,520 --> 00:41:33,120
YEAH, SO THAT'S A REALLY GOOD

1039
00:41:33,120 --> 00:41:37,960
QUESTION, AND WE FACE THAT IN

1040
00:41:37,960 --> 00:41:40,720
ALL DISEASES AND I THINK IF THE

1041
00:41:40,720 --> 00:41:43,840
GROUP COMES UP WITH SOME REALLY

1042
00:41:43,840 --> 00:41:46,240
SPECTACULAR OPPORTUNITIES THAT

1043
00:41:46,240 --> 00:41:48,720
WE NEED TO PUT MONEY ASIDE FOR,

1044
00:41:48,720 --> 00:41:55,040
WE WILL HAVE TO CONSIDER THAT IN

1045
00:41:55,040 --> 00:41:58,440
TERMS OF MONEY FROM CONGRESS,

1046
00:41:58,440 --> 00:42:00,720
YOU KNOW IT'S CERTAINLY HAS

1047
00:42:00,720 --> 00:42:04,080
HELPED US A GREAT DEAL IN THE

1048
00:42:04,080 --> 00:42:07,600
DEMENTIA SPACE AND THE MONEY

1049
00:42:07,600 --> 00:42:10,560
THAT THEY'VE PUT  INTO THISAX

1050
00:42:10,560 --> 00:42:12,000
PANDEMICKED ACCESS WITH ALS,

1051
00:42:12,000 --> 00:42:15,080
WHETHER THEY WOULD EXPAND THAT

1052
00:42:15,080 --> 00:42:16,640
FUNDING TO INCLUDE RESEARCH AT

1053
00:42:16,640 --> 00:42:19,040
NIH, IS NOT ENTIRELY CLEAR.

1054
00:42:19,040 --> 00:42:26,080
THE ODD THING THAT THEY DID WAS

1055
00:42:26,080 --> 00:42:30,680
THEY WANT THE FDA TO START A

1056
00:42:30,680 --> 00:42:32,560
GRANT PROGRAM, SO, SO IT'S NOT

1057
00:42:32,560 --> 00:42:34,240
CLEAR, YOU KNOW BECAUSE NIH IS

1058
00:42:34,240 --> 00:42:36,400
USUALLY THE 1 WHO DOES THE

1059
00:42:36,400 --> 00:42:40,600
GRANTS, FDA DOES EXPANDED

1060
00:42:40,600 --> 00:42:41,960
ACCESS, SO THIS IS A LITTLE BIT

1061
00:42:41,960 --> 00:42:43,920
DIFFERENT BUT WE CAN ONLY KEEP

1062
00:42:43,920 --> 00:42:45,680
OUR FINGERS CROSSED ON THAT AND

1063
00:42:45,680 --> 00:42:47,200
THEN WE HAVE TO, YOU KNOW LIKE

1064
00:42:47,200 --> 00:42:50,800
WITH ALL THE OTHER DISEASES, WE

1065
00:42:50,800 --> 00:42:54,120
HAVE TO YOU KNOW TRY TO PROTECT

1066
00:42:54,120 --> 00:42:59,040
ALL ASPECTS OF OUR SCIENCE BUT

1067
00:42:59,040 --> 00:43:00,440
STILL--YOU KNOW TAKE ADVANTAGE

1068
00:43:00,440 --> 00:43:01,320
OF OPPORTUNITIES THAT COME

1069
00:43:01,320 --> 00:43:02,560
ALONG, YOU KNOW SO THAT WILL

1070
00:43:02,560 --> 00:43:05,560
APPLY TO THE FUNDAMENTAL

1071
00:43:05,560 --> 00:43:06,200
NEUROSCIENCE, TOO,

1072
00:43:06,200 --> 00:43:07,480
THAT--PROBABLY WHY I ASKED.

1073
00:43:07,480 --> 00:43:09,320
>> YES, RIGHT.

1074
00:43:09,320 --> 00:43:12,760
SO, YEAH, I THINK WE CAN--WE CAN

1075
00:43:12,760 --> 00:43:14,840
USUALLY JUGGLE A COUPLE OF

1076
00:43:14,840 --> 00:43:16,520
INIAATIVES AT A TIME.

1077
00:43:16,520 --> 00:43:18,000
WE CAN NEVER JUGGLE AS MANY AS

1078
00:43:18,000 --> 00:43:22,240
PEOPLE WOULD WANT US TO WITHOUT

1079
00:43:22,240 --> 00:43:25,120
REALLY THREATENING THE KIND OF

1080
00:43:25,120 --> 00:43:28,120
FOUNDATION OF NINDS. 

1081
00:43:28,120 --> 00:43:31,880
>> RIGHT.

1082
00:43:31,880 --> 00:43:32,320
THANKS.

1083
00:43:32,320 --> 00:43:33,360
>> VERY STRANGE THAT THERE

1084
00:43:33,360 --> 00:43:34,800
AREN'T MORE QUESTIONS, I WILL

1085
00:43:34,800 --> 00:43:36,840
PUT PRESSURE ON COUNCIL.

1086
00:43:36,840 --> 00:43:37,560
WE HAVE ANOTHER 10 MINUTES

1087
00:43:37,560 --> 00:43:38,880
BEFORE THE NEXT SPEAKER, WE

1088
00:43:38,880 --> 00:43:40,680
COULD TAKE A BREAK BUT ARE THERE

1089
00:43:40,680 --> 00:43:45,240
ANY MORE QUESTIONS?

1090
00:43:45,240 --> 00:43:46,560
>> I CAN TALK ABOUT MORE
THINGS

1091
00:43:46,560 --> 00:43:47,600
IF YOU WANT.

1092
00:43:47,600 --> 00:43:49,120
>> WELL, I DON'T KNOW IF
WE WANT

1093
00:43:49,120 --> 00:43:52,520
TO GO DOWN THAT--THAT COULD TAKE

1094
00:43:52,520 --> 00:43:55,040
US WAY FURTHER.

1095
00:43:55,040 --> 00:43:56,520
>> IS JOHN HERE?

1096
00:43:56,520 --> 00:43:58,080
I SEE HIM,.

1097
00:43:58,080 --> 00:43:58,600
>> I'M HERE.

1098
00:43:58,600 --> 00:44:00,280
>> SO JOHN, I WAS GOING
TO--I

1099
00:44:00,280 --> 00:44:02,080
WAS THINKING WHAT DID I FORGET

1100
00:44:02,080 --> 00:44:05,760
TO INCLUDE, AND I WAS THINKING

1101
00:44:05,760 --> 00:44:07,160
THAT PEDEP WOULD BE SOMETHING

1102
00:44:07,160 --> 00:44:08,320
THAT THE COUNCIL WOULD BE

1103
00:44:08,320 --> 00:44:10,360
INTERESTED IN HEARING ABOUT, YOU

1104
00:44:10,360 --> 00:44:13,120
JUST DID AN ANALYSIS, ANY CHANCE

1105
00:44:13,120 --> 00:44:14,520
YOU COULD LIKE SPUR OF THE

1106
00:44:14,520 --> 00:44:17,280
MOMENT GIVE A BRIEFING?

1107
00:44:17,280 --> 00:44:20,120
>> WELL, THERE'S A CHANCE.

1108
00:44:20,120 --> 00:44:21,840
SORRY WE JUST GOT SOMETHING LIKE

1109
00:44:21,840 --> 00:44:23,840
A 30 SLIDE PRESENTATION ON THAT

1110
00:44:23,840 --> 00:44:27,080
SO THAT MAY BE A LITTLE HARD TO

1111
00:44:27,080 --> 00:44:27,400
SUMMARIZE.

1112
00:44:27,400 --> 00:44:28,640
>> SO SORRY MY CAMERA IS
OUT OF

1113
00:44:28,640 --> 00:44:30,840
ACTION RIGHT NOW, JUST SO PEOPLE

1114
00:44:30,840 --> 00:44:32,120
KNOW, THE PLAN FOR RISK

1115
00:44:32,120 --> 00:44:34,000
PERSPECTIVES IS BEING ROLLED OUT

1116
00:44:34,000 --> 00:44:37,760
I THINK RIGHT NOW IN 23 ACTIVE

1117
00:44:37,760 --> 00:44:41,360
BRAIN RFAs AND ABOUT

1118
00:44:41,360 --> 00:44:42,840
30-SOME-ODD RFAs OUTSIDE OF

1119
00:44:42,840 --> 00:44:43,040
BRAIN.

1120
00:44:43,040 --> 00:44:44,040
SO IT'S BEING TAKEN UP.

1121
00:44:44,040 --> 00:44:46,680
WE DID A VERY PRELIMINARY

1122
00:44:46,680 --> 00:44:49,280
ANALYSIS ON THE FIRST 8 RFAs

1123
00:44:49,280 --> 00:44:51,160
THAT HAD THE PDP IN THEM, AND

1124
00:44:51,160 --> 00:44:52,640
REALLY THIS WAS JUST TO SET UP A

1125
00:44:52,640 --> 00:44:55,800
FRAMEWORK IF ARE DOING,AINAL

1126
00:44:55,800 --> 00:44:56,080
SIS.

1127
00:44:56,080 --> 00:44:57,600
SO THE SHORT VERSION OF THIS IS

1128
00:44:57,600 --> 00:45:00,640
WE DON'T HAVE ENOUGH DATA TO

1129
00:45:00,640 --> 00:45:02,640
DRAW CONCLUSIONS BUT WE FEEL

1130
00:45:02,640 --> 00:45:04,240
CONFIDENT FOR HAVING A GREAT

1131
00:45:04,240 --> 00:45:05,440
FRAMEWORK FOR DOING THE

1132
00:45:05,440 --> 00:45:06,960
EVALUATION AS THE PDP GETS

1133
00:45:06,960 --> 00:45:08,400
ROLLED OUT MORE BROADLY WITHIN

1134
00:45:08,400 --> 00:45:09,680
BRAIN AND ACROSS NIH, WE WILL

1135
00:45:09,680 --> 00:45:16,600
HAVE A GOOD DATA SET TO LOOK AT.

1136
00:45:16,600 --> 00:45:18,520
SO STAY TIEWJED OUR INTEND WAS

1137
00:45:18,520 --> 00:45:20,640
TO DO MORE ANALYSIS TO HAVE A

1138
00:45:20,640 --> 00:45:22,640
ROBUST DATA SET AND COME BACK TO

1139
00:45:22,640 --> 00:45:23,640
THE BRAIN AND MULTICOUNCIL

1140
00:45:23,640 --> 00:45:25,280
WORKING GROUP WHICH IS A GROUP

1141
00:45:25,280 --> 00:45:27,880
OF THE 10 BRAIN IC COUNCILS AND

1142
00:45:27,880 --> 00:45:29,560
ALSO I HOPE TO THIS COUNCIL TO

1143
00:45:29,560 --> 00:45:31,400
GIVE YOU AN OWP DATE BUT WE

1144
00:45:31,400 --> 00:45:32,800
REALLY NEED TO GATHER A LOT MORE

1145
00:45:32,800 --> 00:45:35,120
DATA BEFORE WE CAN COME TO ANY

1146
00:45:35,120 --> 00:45:35,880
CONCLUSIONS.

1147
00:45:35,880 --> 00:45:36,240
SO STAY TUNED.

1148
00:45:36,240 --> 00:45:37,840
I HOPE WHEN THE NEXT COUPLE

1149
00:45:37,840 --> 00:45:39,520
MEETINGS, WE WILL HAVE SOMETHING

1150
00:45:39,520 --> 00:45:40,920
CREDIBLE TO SHARE WITH YOU BUT

1151
00:45:40,920 --> 00:45:41,840
SO FAR, SO GOOD.

1152
00:45:41,840 --> 00:45:44,280
I MEAN WIRE NOT SEEING ANY

1153
00:45:44,280 --> 00:45:46,360
SURPRISE--WE'RE NOT SEEING ANY

1154
00:45:46,360 --> 00:45:50,320
SURPRISES EITHER GOOD OR BAD AT

1155
00:45:50,320 --> 00:45:52,880
THIS POINT.

1156
00:45:52,880 --> 00:45:54,040
>> THANK YOU.

1157
00:45:54,040 --> 00:45:54,960
AND JOHN, CORRECT ME IF I'M

1158
00:45:54,960 --> 00:45:56,520
WRONG BUT I LOT OF OTHER ICs

1159
00:45:56,520 --> 00:45:59,800
HAVE PICKED THIS UP AND TRIED TO

1160
00:45:59,800 --> 00:46:01,560
INCORPORATE INTO THEIR FOISSUE

1161
00:46:01,560 --> 00:46:02,400
As AS WELL.

1162
00:46:02,400 --> 00:46:03,600
>> YEAH, SO THERE'S QUITE
A BIT

1163
00:46:03,600 --> 00:46:05,320
OF DISCUSSION ACROSS THE ICs

1164
00:46:05,320 --> 00:46:08,240
AND ALSO IN OFFICE EXTRAMURAL

1165
00:46:08,240 --> 00:46:09,720
RESEARCH, WE'RE WORKING ON

1166
00:46:09,720 --> 00:46:11,240
LANGUAGE THAT WILL BE

1167
00:46:11,240 --> 00:46:12,960
STANDARDIZED ACROSS ALL RFAs,

1168
00:46:12,960 --> 00:46:16,000
BECAUSE YOU KNOW YOU CAN IMAGINE

1169
00:46:16,000 --> 00:46:17,120
THAT THERE'S CERTAIN LINES WE

1170
00:46:17,120 --> 00:46:18,200
CANNOT CROSS WITH THIS, WE WANT

1171
00:46:18,200 --> 00:46:20,160
TO MAKE SURE WE'RE CONSISTENT IN

1172
00:46:20,160 --> 00:46:21,280
DOING THIS RIGHT.

1173
00:46:21,280 --> 00:46:22,440
SO IT'S BEING--THERE WILL BE

1174
00:46:22,440 --> 00:46:24,200
TUNE UPS BASED ON THE ROLLING

1175
00:46:24,200 --> 00:46:27,360
ANALYSIS OF THIS, BUT IT IS

1176
00:46:27,360 --> 00:46:28,640
BEING DEPLOYED MORE BROADLY

1177
00:46:28,640 --> 00:46:29,920
ACROSS NIH, AND I THINK THAT'S

1178
00:46:29,920 --> 00:46:31,600
BOTH THE GREAT THING BUT ALSO A

1179
00:46:31,600 --> 00:46:32,840
CHALLENGE TO MAKE SURE IT GETS

1180
00:46:32,840 --> 00:46:36,760
DONE AND DONE WELL.

1181
00:46:36,760 --> 00:46:38,720
>> OKAY, IF THERE'S NO
OTHER

1182
00:46:38,720 --> 00:46:41,720
QUESTIONS, WHY DON'T WE JUST

1183
00:46:41,720 --> 00:46:43,320
TAKE ABOUT A--LET'S TAKE EXACTLY

1184
00:46:43,320 --> 00:46:44,280
A 10 MINUTE BREAK.

1185
00:46:44,280 --> 00:46:46,520
WE HAVE A SPEAKER AT 2.

1186
00:46:46,520 --> 00:46:49,320
WHY DON'T WE TAKE A QUICK BREAK.

1187
00:46:49,320 --> 00:46:50,240
BROOK, DON'T MUTE EVERYBODY

1188
00:46:50,240 --> 00:46:52,040
DURING THIS BREAK BECAUSE IF

1189
00:46:52,040 --> 00:46:53,240
MIKE LAWER COMES ON, I WANT TO

1190
00:46:53,240 --> 00:46:54,640
BE ABLE TO TALK TO HIM.

1191
00:46:54,640 --> 00:46:56,280
SO EVERYONE PLEASE JUST MUTE

1192
00:46:56,280 --> 00:47:00,200
YOURSELF AND COME BACK IN 9 OR

1193
00:47:00,200 --> 00:47:08,560
10 MINUTES.

1194
00:47:08,560 --> 00:47:10,680
>>LOOK, SO, WE'RE ABOUT
TO HAVE

1195
00:47:10,680 --> 00:47:12,120
2 DISCUSSIONS THAT I ACTUALLY

1196
00:47:12,120 --> 00:47:16,000
THINK, I SHOULDN'T SAY ACTUALLY,

1197
00:47:16,000 --> 00:47:17,080
ALL COUNCIL DISCUSSIONS ARE

1198
00:47:17,080 --> 00:47:18,760
INTERESTING, BUT THESE WILL BE

1199
00:47:18,760 --> 00:47:19,840
PARTICULARLY INTERESTING, FIRST

1200
00:47:19,840 --> 00:47:21,960
SPEAKER IS DR. MICHAEL LAUER,

1201
00:47:21,960 --> 00:47:24,360
WHO IS THE DEPUTY DIRECTOR FOR

1202
00:47:24,360 --> 00:47:25,200
EXTRAMURAL RESEARCH, HE IS THE

1203
00:47:25,200 --> 00:47:26,640
HEAD OF ALL THINGS EXTRAMURAL

1204
00:47:26,640 --> 00:47:29,400
AND HE WILL TALK ABOUT THE NEW

1205
00:47:29,400 --> 00:47:31,120
NIH DATA MANAGEMENT AND SHARING

1206
00:47:31,120 --> 00:47:32,560
POLICY, HE MIGHT EVEN TOUCH A

1207
00:47:32,560 --> 00:47:34,880
LITTLE ON THE OSTP DIRECTIVE,

1208
00:47:34,880 --> 00:47:37,440
NOD, MIKE IF THAT'S UP TO YOU.

1209
00:47:37,440 --> 00:47:38,880
I WASN'T SURE ABOUT THAT.

1210
00:47:38,880 --> 00:47:40,360
AND THEN AFTER THAT, I WILL JUST

1211
00:47:40,360 --> 00:47:42,720
MENTION THAT WE'RE GOING TO HAVE

1212
00:47:42,720 --> 00:47:47,280
A TALK THAT'S SOMEWHAT RELATED

1213
00:47:47,280 --> 00:47:48,760
FROM SHAI SILBERBERG, ABOUT THE

1214
00:47:48,760 --> 00:47:51,440
IMPORTANCE OF SHARING NEGATIVE

1215
00:47:51,440 --> 00:47:53,000
DATA AOPPOSE TO MOST OF THE DATA

1216
00:47:53,000 --> 00:47:55,080
THAT'S SHARED SO WITHOUT FURTHER

1217
00:47:55,080 --> 00:47:57,120
ADO I WILL TURN IT OVER TO YOUR

1218
00:47:57,120 --> 00:47:59,840
SHOW AND YOUR SLIDES, THAT LOOKS

1219
00:47:59,840 --> 00:48:00,440
GOOD.

1220
00:48:00,440 --> 00:48:01,200
>> GREAT.

1221
00:48:01,200 --> 00:48:01,680
>> THANKS FOR COMING.

1222
00:48:01,680 --> 00:48:04,080
>> BOB, THANK YOU VERY
MUCH.

1223
00:48:04,080 --> 00:48:04,880
I'M GLAD, THIS TECHNICAL PROBLEM

1224
00:48:04,880 --> 00:48:06,320
TURNED OUT TO BE RELATIVELY

1225
00:48:06,320 --> 00:48:07,880
MINOR SO I APPRECIATE THE

1226
00:48:07,880 --> 00:48:10,720
INVITATION, TO COME TO OUR

1227
00:48:10,720 --> 00:48:11,880
COUNCIL TODAY.

1228
00:48:11,880 --> 00:48:16,520
AND I'M GOING TALK ABOUT

1229
00:48:16,520 --> 00:48:17,640
IMPLEMENTATION OF OUR DATA

1230
00:48:17,640 --> 00:48:18,720
MANAGEMENT AND SHARING POLICY

1231
00:48:18,720 --> 00:48:19,840
AND I WANTED TO TAKE THIS

1232
00:48:19,840 --> 00:48:20,760
OPPORTUNITY TO POINT OUT THAT

1233
00:48:20,760 --> 00:48:21,760
LOTS OF PEOPLE HAVE BEEN WORKING

1234
00:48:21,760 --> 00:48:24,960
ON THIS IN PARTICULAR, MY

1235
00:48:24,960 --> 00:48:29,400
COLLEAGUES FROM THE OFFICE OF

1236
00:48:29,400 --> 00:48:34,080
SCIENCE POLICY, LYRIC JORGENSON,

1237
00:48:34,080 --> 00:48:36,240
AND TAUNTON, P A INE, AND THEN

1238
00:48:36,240 --> 00:48:37,040
MANY, MANY RPGHTS.

1239
00:48:37,040 --> 00:48:40,960
OKAY, SO DATA SHARING IS OF

1240
00:48:40,960 --> 00:48:42,000
INTEREST, LITERALLY THEA THE

1241
00:48:42,000 --> 00:48:42,840
HIGHEST LEVELS OF GOVERNMENT.

1242
00:48:42,840 --> 00:48:44,360
THIS IS SOMETHING THAT PRESIDENT

1243
00:48:44,360 --> 00:48:46,480
BIDEN HAS SPOKEN ABOUT, HE ALSO

1244
00:48:46,480 --> 00:48:47,760
SPOKE ABOUT QUITE ELOQUENTLY

1245
00:48:47,760 --> 00:48:50,480
WHEN HE WAS VICE PRESIDENT, AND

1246
00:48:50,480 --> 00:48:52,040
LEADING THE CANCER MOONSHOT

1247
00:48:52,040 --> 00:48:54,160
EFFORTS AND IT'S ALSO SOMETHING

1248
00:48:54,160 --> 00:48:56,640
WHICH IS EXPLICITLY CALLED OUT

1249
00:48:56,640 --> 00:48:58,200
IN THE 21st CENTURY CURES ACT

1250
00:48:58,200 --> 00:49:01,200
WHICH HAD A PROVISION, THAT

1251
00:49:01,200 --> 00:49:03,680
AUTHORIZED THE NIH DIRECTOR TO

1252
00:49:03,680 --> 00:49:06,160
REQUIRE THE SHARING OF

1253
00:49:06,160 --> 00:49:06,840
SCIENTIFIC DATA.

1254
00:49:06,840 --> 00:49:10,240
IN FACT, DATA POLICIES ARE NOT

1255
00:49:10,240 --> 00:49:13,520
NEW, THEY GO WAY BACK BEFORE THE

1256
00:49:13,520 --> 00:49:14,960
21st CENTURY CURES ACT, THE

1257
00:49:14,960 --> 00:49:17,680
POLICY THAT WE IN PLACE RIGHT

1258
00:49:17,680 --> 00:49:21,320
NOW WHICH WILL BE SUPPLANTED IN

1259
00:49:21,320 --> 00:49:24,680
JANUARY OF 2023, GOES BACK 20

1260
00:49:24,680 --> 00:49:27,120
YEARS TO 2003, ON THIS DATA

1261
00:49:27,120 --> 00:49:28,240
SHARING POLICY APPLIED TO AWARDS

1262
00:49:28,240 --> 00:49:30,640
THAT ARE MORE THAN 500 K OF

1263
00:49:30,640 --> 00:49:32,040
DIRECT COST PER YEAR AND THEN

1264
00:49:32,040 --> 00:49:33,600
THERE HAVE BEEN A VARIETY OF

1265
00:49:33,600 --> 00:49:34,720
OTHER DATA SHARING POLICIES THAT

1266
00:49:34,720 --> 00:49:37,240
HAVE COME ALONG THE WAY,

1267
00:49:37,240 --> 00:49:38,800
INCLUDING THE GENOMIC DATA

1268
00:49:38,800 --> 00:49:40,360
SHARING POLICY, POLICIES ABOUT

1269
00:49:40,360 --> 00:49:42,200
THE SHARING OF CLINICAL TRIAL

1270
00:49:42,200 --> 00:49:45,320
INFORMATION, AND THEN A VARIETY

1271
00:49:45,320 --> 00:49:47,840
OF DATA SHARING POLICIES RELATED

1272
00:49:47,840 --> 00:49:50,480
TO SPECIFIC PROGRAMS OR ICs

1273
00:49:50,480 --> 00:49:51,800
AND I'M GUESSING THAT YOU'RE

1274
00:49:51,800 --> 00:49:53,720
PROBABLY FAMILIAR WITH AT LEAST

1275
00:49:53,720 --> 00:49:54,560
SOME OF THESE.

1276
00:49:54,560 --> 00:49:56,200
THIS PARTICULAR POLICY, HAS BEEN

1277
00:49:56,200 --> 00:49:58,760
A LONG TIME IN COMING.

1278
00:49:58,760 --> 00:50:00,280
IT GOES BACK TO 2016 AND AGAIN,

1279
00:50:00,280 --> 00:50:03,360
THAT WAS THE YEAR THAT THE

1280
00:50:03,360 --> 00:50:06,160
21st CENTURY CURES ACT WAS

1281
00:50:06,160 --> 00:50:09,000
PASSED BY OVERWHELMING

1282
00:50:09,000 --> 00:50:11,120
BIPARTISAN, OVERWHELMING BI

1283
00:50:11,120 --> 00:50:12,800
PARTIS AN MAJORITIES BY CONGRESS

1284
00:50:12,800 --> 00:50:14,000
AND SIGNED BY PRESIDENT OBAMA

1285
00:50:14,000 --> 00:50:15,880
AND SINCE THAT TIME THERE HAVE

1286
00:50:15,880 --> 00:50:17,440
BEEN A NUMBER OF DRAFTS THAT

1287
00:50:17,440 --> 00:50:20,280
HAVE BEEN PUT TOGETHER, SENT OUT

1288
00:50:20,280 --> 00:50:21,400
FOR PUBLIC COMMENT, THOSE PUBLIC

1289
00:50:21,400 --> 00:50:22,640
COMMENTS HAVE BEEN CONSIDERED

1290
00:50:22,640 --> 00:50:24,680
AND THERE'S ALSO BEEN INPUT FROM

1291
00:50:24,680 --> 00:50:26,280
VARIOUS PARTS OF GOVERNMENT, THE

1292
00:50:26,280 --> 00:50:29,880
FINAL POLICY ITSELF WAS RELEASED

1293
00:50:29,880 --> 00:50:31,520
IN OCTOBER OF 2020 AND AT THAT

1294
00:50:31,520 --> 00:50:33,200
TIME, WE ANNOUNCED THAT IT WOULD

1295
00:50:33,200 --> 00:50:35,360
BE EFFECTIVE FOR APPLICATIONS

1296
00:50:35,360 --> 00:50:37,760
COMING IN, IN JANUARY OF 2023.

1297
00:50:37,760 --> 00:50:43,400
SO THIS HAS BEEN A LONG PROCESS.

1298
00:50:43,400 --> 00:50:45,360
WHY DOES NIH WANT DATA TO BE

1299
00:50:45,360 --> 00:50:49,280
SHARED, HOPEFULLY THIS IS FAIRLY

1300
00:50:49,280 --> 00:50:52,880
OBVIOUS, BUT IT'S TO ADVANCE

1301
00:50:52,880 --> 00:50:53,520
RIGOROUS AND REPRODUCIBLE

1302
00:50:53,520 --> 00:50:55,480
RESEARCH AS WELL AS TO PROMOTE

1303
00:50:55,480 --> 00:50:56,440
PUBLIC TRUST IN RESEARCH.

1304
00:50:56,440 --> 00:50:57,760
AND IF WE THINK ABOUT IT, THE

1305
00:50:57,760 --> 00:51:00,520
PICTURE THAT WE HAVE RIGHT NOW,

1306
00:51:00,520 --> 00:51:02,760
OF DATA SHARING IS DECIDEDLY

1307
00:51:02,760 --> 00:51:02,960
MIXED.

1308
00:51:02,960 --> 00:51:08,200
SO LET ME START WITH THE BAD

1309
00:51:08,200 --> 00:51:08,400
NEWS.

1310
00:51:08,400 --> 00:51:12,560
SO HERE'S AN EXAMPLE OF A

1311
00:51:12,560 --> 00:51:13,240
PROBLEMATIC FINDING THIS WAS

1312
00:51:13,240 --> 00:51:15,440
FROM THE CENTER OF OPEN SCIENCE

1313
00:51:15,440 --> 00:51:17,520
FOR A VERY LARGE SCALE PROJECT

1314
00:51:17,520 --> 00:51:19,040
AND SEEING WHETHER OR NOT THEY

1315
00:51:19,040 --> 00:51:19,840
COULD REPRODUCE WHAT THEY

1316
00:51:19,840 --> 00:51:23,640
CONSIDERED TO BE HIGH IMP PACT,

1317
00:51:23,640 --> 00:51:26,720
PRECLINICAL, CANCER BIOLOGY

1318
00:51:26,720 --> 00:51:28,480
STUDIES AND THERE WERE NUMEROUS

1319
00:51:28,480 --> 00:51:30,080
ARTICLES THAT WERE PUBLISHED.

1320
00:51:30,080 --> 00:51:33,480
THIS CAME OUT IN DECEMBER OF

1321
00:51:33,480 --> 00:51:33,920
2021.

1322
00:51:33,920 --> 00:51:36,600
SO, LITTLE WHILE AGO, AND 1 OF

1323
00:51:36,600 --> 00:51:39,080
THE MOST DISTURBING FINDINGS IS

1324
00:51:39,080 --> 00:51:40,480
THAT DESPITE CONTACTING THE

1325
00:51:40,480 --> 00:51:42,200
AUTHORS OF THE ORIGINAL PAPERS,

1326
00:51:42,200 --> 00:51:44,960
THEY WERE UNABLE TO OBTAIN DATA

1327
00:51:44,960 --> 00:51:47,200
FOR 68% OF THE EXPERIMENTS, THE

1328
00:51:47,200 --> 00:51:49,400
AUTHORS EITHER WERE UNWILLING OR

1329
00:51:49,400 --> 00:51:53,320
UNABLE TO PROVIDE THOSE DATA IN

1330
00:51:53,320 --> 00:51:55,240
ORDER FOR THE--FOR THESE

1331
00:51:55,240 --> 00:51:56,720
PARTICULAR INVESTIGATORS TO

1332
00:51:56,720 --> 00:51:57,640
UNDERTAKE THEIR APPLICATION

1333
00:51:57,640 --> 00:51:57,880
EFFORTS.

1334
00:51:57,880 --> 00:52:00,440
THIS WAS A STUDY THAT WAS

1335
00:52:00,440 --> 00:52:02,880
PUBLISHED THIS YEAR, CAME FROM

1336
00:52:02,880 --> 00:52:06,360
EUROPE, AND WHAT HAPPENED HERE

1337
00:52:06,360 --> 00:52:09,040
IS THAT THESE AUTHORS IDENTIFIED

1338
00:52:09,040 --> 00:52:10,160
ABOUT 1800 PAPERS, WHERE THERE

1339
00:52:10,160 --> 00:52:12,440
WAS ACTUALLY A DATA AVAILABILITY

1340
00:52:12,440 --> 00:52:12,960
STATEMENT.

1341
00:52:12,960 --> 00:52:13,960
IT WAS ACTUALLY A STATEMENT

1342
00:52:13,960 --> 00:52:15,480
SAYING WE WILL SHARE OUR DATA,

1343
00:52:15,480 --> 00:52:17,560
OUR DATA WILL BE AVAILABLE UPON

1344
00:52:17,560 --> 00:52:17,800
REQUEST.

1345
00:52:17,800 --> 00:52:21,000
THERE'S SOMETHING ALONG THOSE

1346
00:52:21,000 --> 00:52:22,480
LINES, AND OVER 90% OF THE CASES

1347
00:52:22,480 --> 00:52:24,560
THEY WERE UNABLE TO GET THE

1348
00:52:24,560 --> 00:52:27,120
DATA, ONLY 7% OF THE AUTHORS WHO

1349
00:52:27,120 --> 00:52:29,360
HAD A DATA AVAILABILITY

1350
00:52:29,360 --> 00:52:32,240
STATEMENT ACTUALLY MADE THEIR

1351
00:52:32,240 --> 00:52:32,880
DATA AVAILABLE.

1352
00:52:32,880 --> 00:52:34,680
SO THAT'S THE BAD NEWS, NOW

1353
00:52:34,680 --> 00:52:35,920
THERE IS SOME GOOD NEWS AND THIS

1354
00:52:35,920 --> 00:52:40,200
IS A PAPER THAT WAS PUBLISHED BY

1355
00:52:40,200 --> 00:52:42,720
MY FORMER COLLEAGUE SEAN CODEY

1356
00:52:42,720 --> 00:52:44,280
AT NHLBI AND COLLEAGUES AND WHAT

1357
00:52:44,280 --> 00:52:48,320
THEY DID, WAS THEY LOOKED AT

1358
00:52:48,320 --> 00:52:52,120
DATA, THAT HAD BEEN DEPOSITED

1359
00:52:52,120 --> 00:52:55,720
INTO A REPOSITORY THAT NHLBI

1360
00:52:55,720 --> 00:52:59,800
RUNS, AND THEY DEPOSITED DATA ON

1361
00:52:59,800 --> 00:53:00,640
100 CLINICAL TRIALS.

1362
00:53:00,640 --> 00:53:02,040
THAT'S WHAT WAS LOOKED AT HERE,

1363
00:53:02,040 --> 00:53:04,280
THERE'S A LOT MORE DAT THAT'S IN

1364
00:53:04,280 --> 00:53:05,720
THERE BUT IN THIS PARTICULAR

1365
00:53:05,720 --> 00:53:07,720
CASE, THEY FOCUSED ON 100

1366
00:53:07,720 --> 00:53:09,480
CLINICAL TRIALS WHERE INDIVIDUAL

1367
00:53:09,480 --> 00:53:12,080
PATIENT LEVEL DATAA WERE

1368
00:53:12,080 --> 00:53:14,480
DEPOSITED AND MADE AVAILABLE TO

1369
00:53:14,480 --> 00:53:16,720
THE COMMUNITY FOR SHARING AND

1370
00:53:16,720 --> 00:53:19,080
WHAT THEY FOUND WAS THAT MOST OF

1371
00:53:19,080 --> 00:53:21,360
THE TRIALS, IN FACT, NEARLY 90%

1372
00:53:21,360 --> 00:53:25,520
OF THE TRIALS SOMEBODY REQUEST

1373
00:53:25,520 --> 00:53:26,040
THE DATA.

1374
00:53:26,040 --> 00:53:28,240
AND FURTHER MORE THERE WERE 277

1375
00:53:28,240 --> 00:53:29,200
ARTICLES THAT WERE PUBLISHED AND

1376
00:53:29,200 --> 00:53:33,000
MANY OF THESE ARTICLES HAD

1377
00:53:33,000 --> 00:53:34,440
CITATION VALUES THAT WERE--THAT

1378
00:53:34,440 --> 00:53:36,040
WERE QUITE GOOD AND THAT WERE,

1379
00:53:36,040 --> 00:53:39,000
LET'S SAY WELL ABOVE THE AVERAGE

1380
00:53:39,000 --> 00:53:40,680
FOR NHLBI FUNDED PAPERS AT

1381
00:53:40,680 --> 00:53:40,880
LARGE.

1382
00:53:40,880 --> 00:53:43,480
NOW, LET ME, I WILL MAKE JUST A

1383
00:53:43,480 --> 00:53:45,280
1 QUICK OR 2 QUICK DISCLOSURES

1384
00:53:45,280 --> 00:53:47,440
HERE, YOU KNOW 1 IS THAT I

1385
00:53:47,440 --> 00:53:50,720
WORKED AT NHLBI ONCE UPON A TIME

1386
00:53:50,720 --> 00:53:52,560
AND WE OVERSAW THIS PARTICULAR

1387
00:53:52,560 --> 00:53:53,200
DATA REPOSITORY AND THE SECOND

1388
00:53:53,200 --> 00:53:55,680
IS THAT BEFORE I CAME TO NIH,

1389
00:53:55,680 --> 00:53:58,200
THIS IS NOW, YOU KNOW MAYBE 25

1390
00:53:58,200 --> 00:54:00,200
OR SO YEARS AGO, I ACTUALLY USED

1391
00:54:00,200 --> 00:54:01,240
SOME OF THESE DATA.

1392
00:54:01,240 --> 00:54:02,600
SO THESE DATA WERE AVAILABLE AND

1393
00:54:02,600 --> 00:54:04,960
I WAS ABLE TO ACCESS THE DATA

1394
00:54:04,960 --> 00:54:07,440
AND WE PUBLISHED SOME PAPERS ON

1395
00:54:07,440 --> 00:54:09,200
THE BASIS OF IT.

1396
00:54:09,200 --> 00:54:11,600
SO THERE IS SOME GOOD NEWS HERE

1397
00:54:11,600 --> 00:54:13,560
WHICH IS THAT DATA SHARING IS

1398
00:54:13,560 --> 00:54:14,880
ACTUALLY HAPPENING IN SOME

1399
00:54:14,880 --> 00:54:16,040
INSTANCES THIS IS ACTUALLY

1400
00:54:16,040 --> 00:54:22,320
YIELDING A SCIENTIFIC RESULTS.

1401
00:54:22,320 --> 00:54:24,360
THERE ARE DATA THAT THE PUBLIC

1402
00:54:24,360 --> 00:54:26,680
WANTS DATA TO BE SHARED.

1403
00:54:26,680 --> 00:54:28,440
THIS IS DATA DONE BY THE PEW

1404
00:54:28,440 --> 00:54:29,160
RESEARCH FOUNDATION AND THEY

1405
00:54:29,160 --> 00:54:34,720
NOTE THAD PEOPLE ARE MORE LIKELY

1406
00:54:34,720 --> 00:54:35,400
TO TRUST SOMETHING IF THEY KNOW

1407
00:54:35,400 --> 00:54:37,160
THE DAILY BASIS THEA IS PUBLICLY

1408
00:54:37,160 --> 00:54:38,200
AVAILABLE AND THEY'RE LESS

1409
00:54:38,200 --> 00:54:39,840
LIKELY TO TRUST SOMETHING IF

1410
00:54:39,840 --> 00:54:42,160
IT'S FUNDED BY THE FEDERAL

1411
00:54:42,160 --> 00:54:44,280
GOVERNMENT OR BY INDUSTRY.

1412
00:54:44,280 --> 00:54:45,440
ALL RIGHT, SO NOW WHAT I WANT TO

1413
00:54:45,440 --> 00:54:53,320
DO IS TALK ABOUT THE POLICY

1414
00:54:53,320 --> 00:54:53,720
ITSELF.

1415
00:54:53,720 --> 00:54:55,280
THERE REALLY ARE 2 PARTS OF THE

1416
00:54:55,280 --> 00:54:56,360
POLICY, 1 WILL BE DESCRIBED BY

1417
00:54:56,360 --> 00:54:58,520
THE CHAIR, AND THE SECOND PART

1418
00:54:58,520 --> 00:55:00,600
OF THE POLICY TO COMPLY WITH THE

1419
00:55:00,600 --> 00:55:03,120
PLAN, AND THAT IS EFFECTIVE

1420
00:55:03,120 --> 00:55:05,560
JANUARY 25th, 20 TWAI, THAT IS

1421
00:55:05,560 --> 00:55:07,600
FOR APPLICATIONS COMING IN,

1422
00:55:07,600 --> 00:55:08,600
JANUARY 25th OR 2023 AND

1423
00:55:08,600 --> 00:55:08,920
AFTERWARDS.

1424
00:55:08,920 --> 00:55:10,200
NOW THERE ARE A LOT OFY DETAILS

1425
00:55:10,200 --> 00:55:12,840
AND I AM TALK ABOUT A FEW OF

1426
00:55:12,840 --> 00:55:14,440
THEM, 1 IS WE HAVE A DEFINITION

1427
00:55:14,440 --> 00:55:16,280
OF WHAT'S ACTUALLY MEANT BY DATA

1428
00:55:16,280 --> 00:55:17,760
AND PERHAPS WHAT'S MORE

1429
00:55:17,760 --> 00:55:19,040
IMPORTANT IS NOT WHAT'S NOT

1430
00:55:19,040 --> 00:55:21,520
MEANT BY DATA SO WHAT'S NOT

1431
00:55:21,520 --> 00:55:24,080
MEANT BY DATA ARE LABORATORY

1432
00:55:24,080 --> 00:55:24,760
NOTEBOOKS FOR ANALYSIS,

1433
00:55:24,760 --> 00:55:27,800
INDIVIDUAL CASE REPORT FORMS,

1434
00:55:27,800 --> 00:55:28,880
OBJECTS, BIOSAMPLES, THAT'S NOT

1435
00:55:28,880 --> 00:55:31,880
WOWE'RE TALKING ABOUT, WE ARE

1436
00:55:31,880 --> 00:55:32,920
FOCUSING ON RESEARCH THAT

1437
00:55:32,920 --> 00:55:34,480
GENERATES DATA SO WE KNOW WE

1438
00:55:34,480 --> 00:55:36,000
FUND AWARDS THAT DO NOT GENERATE

1439
00:55:36,000 --> 00:55:38,600
DATA SUCH AS A RESOURCE AWARDS

1440
00:55:38,600 --> 00:55:40,160
OR INSTRUMENTATION AWARDS OR

1441
00:55:40,160 --> 00:55:40,760
CONSTRUCTION AWARDS ALSO

1442
00:55:40,760 --> 00:55:43,800
TRAINING OR FOLLOW OSHIP,

1443
00:55:43,800 --> 00:55:44,280
AWARDS.

1444
00:55:44,280 --> 00:55:45,800
IT IS THE POLICIES STATES THAT

1445
00:55:45,800 --> 00:55:49,040
DATA NEED TO BE SHARED AT THE

1446
00:55:49,040 --> 00:55:52,680
TIME OF PUBLICATION, OR AT THE

1447
00:55:52,680 --> 00:55:57,560
END OF AN AWARD FOR DATA THAT

1448
00:55:57,560 --> 00:55:58,440
ARE NOT PUBLISHED.

1449
00:55:58,440 --> 00:56:03,120
THERE ARE OF COURSE EXCEPTIONS.

1450
00:56:03,120 --> 00:56:04,280
THERE ARE--THE GENERAL RULE IS

1451
00:56:04,280 --> 00:56:06,280
THAT DATA SHOULD BE--SHOULD BE

1452
00:56:06,280 --> 00:56:09,160
SHARED AND THE MORE DATA--THE

1453
00:56:09,160 --> 00:56:11,200
IDEA IS TO MAXIMIZE THE AMOUNT

1454
00:56:11,200 --> 00:56:13,040
OF DATA SHARING, THAT'S THE

1455
00:56:13,040 --> 00:56:13,840
DEFAULT THINKING, ALL DATA HAS

1456
00:56:13,840 --> 00:56:15,600
TO BE MANAGED BUT NOT ALL DATA

1457
00:56:15,600 --> 00:56:17,160
NEED TO BE SHARED AND WE

1458
00:56:17,160 --> 00:56:19,640
UNDERSTAND THAT OF COURSE THERE

1459
00:56:19,640 --> 00:56:20,840
ARE LEGITIMATE LIMITATIONS

1460
00:56:20,840 --> 00:56:23,040
INCLUDING PROTECTION OF PRIVACY

1461
00:56:23,040 --> 00:56:24,280
RIGHTS AND CONFIDENTIALITY AS

1462
00:56:24,280 --> 00:56:27,680
WELL AS CERTAIN LAWS, POLICIES

1463
00:56:27,680 --> 00:56:28,160
AND REGULATIONS.

1464
00:56:28,160 --> 00:56:31,680
A CRITICAL PART OF THE POLICY IS

1465
00:56:31,680 --> 00:56:33,440
THAT SCIENTISTS SHOULD BE

1466
00:56:33,440 --> 00:56:34,440
THINKING ABOUT MANAGEMENT AND

1467
00:56:34,440 --> 00:56:38,160
SHARING OF DATA FROM THE GET-GO.

1468
00:56:38,160 --> 00:56:39,680
THIS IS A PROSPECTIVE PROCESS

1469
00:56:39,680 --> 00:56:41,080
WHICH OBVIOUSLY WILL EVOLVE OVER

1470
00:56:41,080 --> 00:56:42,920
TIME BUT IT'S SOMETHING THAT

1471
00:56:42,920 --> 00:56:45,560
SHOULD BE THOUGHT OF AT THE VERY

1472
00:56:45,560 --> 00:56:46,160
BEGINNING.

1473
00:56:46,160 --> 00:56:48,360
THERE ARE REASONS WHY DATA MAY

1474
00:56:48,360 --> 00:56:50,360
NOT BE SHARED, THERE MAY BE

1475
00:56:50,360 --> 00:56:51,600
INFORMED CONSENT ISSUES, THERE

1476
00:56:51,600 --> 00:56:54,040
MAY BE CONCERNS ABOUT THE PRFACY

1477
00:56:54,040 --> 00:56:55,560
OR SAFETY OF RESEARCH

1478
00:56:55,560 --> 00:56:56,200
PARTICIPANTS.

1479
00:56:56,200 --> 00:56:58,360
THERE MAY BE EXPLICIT LAWS

1480
00:56:58,360 --> 00:57:00,280
INCLUDING FOR EXAMPLE, STATE

1481
00:57:00,280 --> 00:57:02,880
LOCAL, OR TRIBAL LAWS.

1482
00:57:02,880 --> 00:57:04,480
THERE MAY BE RESTRICTIONS DUE TO

1483
00:57:04,480 --> 00:57:06,400
AGREEMENTS WITH OTHER PARTIES,

1484
00:57:06,400 --> 00:57:11,480
OR THERE MAY BE A VARIETY OF

1485
00:57:11,480 --> 00:57:11,960
OTHER PRACTICAL REASONS.

1486
00:57:11,960 --> 00:57:14,600
THESE ARE REASONS WHY--THESE ARE

1487
00:57:14,600 --> 00:57:16,240
NOT LEGITIMATE REASONS FOR NOT

1488
00:57:16,240 --> 00:57:17,640
SHARING DATA, LIKE THE DATA ARE

1489
00:57:17,640 --> 00:57:19,040
TOO SMALL, WE DON'T THINK THE

1490
00:57:19,040 --> 00:57:20,840
DATA WILL BE WIDELY USED.

1491
00:57:20,840 --> 00:57:23,400
WE DON'T THINK THAT THERE'S A

1492
00:57:23,400 --> 00:57:26,040
SUITABLE REPOSITORY BECAUSE

1493
00:57:26,040 --> 00:57:26,480
THERE IS 1.

1494
00:57:26,480 --> 00:57:30,840
AND THERE ARE A VARIETY OF OTHER

1495
00:57:30,840 --> 00:57:32,680
CONSIDERATIONS, SBIR, STTR,

1496
00:57:32,680 --> 00:57:35,560
THERE IS--IT'S ALLOWED FOR DATA

1497
00:57:35,560 --> 00:57:39,480
TO BE WITHHELD FOR 20 YEARS AS

1498
00:57:39,480 --> 00:57:41,920
WELL AS TRIBAL SOVEREIGNTY.

1499
00:57:41,920 --> 00:57:42,960
ALL RIGHT, NOW, I'M NOT GOING TO

1500
00:57:42,960 --> 00:57:46,120
BE ABLE TO TELL YOU EVERYTHING

1501
00:57:46,120 --> 00:57:47,080
ABOUT THIS, DURING THIS POINT

1502
00:57:47,080 --> 00:57:49,640
TODAY BUT THERE IS A LOT OF

1503
00:57:49,640 --> 00:57:52,120
INFORMATION AVAILABLE AND I WANT

1504
00:57:52,120 --> 00:57:55,800
TO THANK MY COLLEAGUES,

1505
00:57:55,800 --> 00:57:58,120
PARTICULARLY LEE SULLIVAN IN OUR

1506
00:57:58,120 --> 00:57:58,920
DIVISION OF COMMUNICATIONS AND

1507
00:57:58,920 --> 00:58:00,440
OUTREACH AND HER TEAM, FOR

1508
00:58:00,440 --> 00:58:02,920
WORKING WITH OTHERS TO PUT

1509
00:58:02,920 --> 00:58:10,120
TOGETHER THIS WEBSITE, THIS

1510
00:58:10,120 --> 00:58:13,720
WEBSITE BECAME WAS RELEASED ON

1511
00:58:13,720 --> 00:58:18,720
APRIL 5th, IT IS CONSTANTLY

1512
00:58:18,720 --> 00:58:21,720
UPDATED, IT'S HERE AT

1513
00:58:21,720 --> 00:58:22,440
SHARING.NIH.GOV.

1514
00:58:22,440 --> 00:58:24,080
BUT ALSO SHARING POLICIES ABOUT

1515
00:58:24,080 --> 00:58:25,640
THE GENOMIC DATA SHARING POLICY

1516
00:58:25,640 --> 00:58:27,160
ALSO FOR PEOPLE ON THE OTHER END

1517
00:58:27,160 --> 00:58:28,800
LIKE FOR WHEN I WAS A JUNIOR

1518
00:58:28,800 --> 00:58:31,000
RESEARCHER, PEOPLE ARE

1519
00:58:31,000 --> 00:58:34,800
INTERESTED IN ACCESSING DATA.

1520
00:58:34,800 --> 00:58:38,360
SO IF THIS IS THE ONLY THING

1521
00:58:38,360 --> 00:58:40,000
THAT HAPPENS TODAY, AND YOU

1522
00:58:40,000 --> 00:58:42,200
SPREAD THE WORD ABOUT THIS

1523
00:58:42,200 --> 00:58:43,440
WEBSITE THEN I'VE ACCOMPLISHED

1524
00:58:43,440 --> 00:58:44,320
SOMETHING USEFUL.

1525
00:58:44,320 --> 00:58:45,880
THERE'S QUITE A BIT HERE AND YOU

1526
00:58:45,880 --> 00:58:47,440
CAN DIG INTO A VARIETY OF

1527
00:58:47,440 --> 00:58:50,520
DIFFERENT TOPICS, THERE IS FOR

1528
00:58:50,520 --> 00:58:54,240
EXAMPLE, A WIZARD WHERE YOU CAN

1529
00:58:54,240 --> 00:58:55,560
FIGURE OUT WHICH POLICY

1530
00:58:55,560 --> 00:58:56,560
SPECIFICALLY APPLY TO YOU AND

1531
00:58:56,560 --> 00:58:59,960
THIS IS THE OPENING LINE OF THE

1532
00:58:59,960 --> 00:59:01,400
WIZARD AND THEN ADDITION, THERE

1533
00:59:01,400 --> 00:59:04,720
ARE LOTS OF RESOURCES.

1534
00:59:04,720 --> 00:59:07,000
SO RESOURCES ON DATA SHARING

1535
00:59:07,000 --> 00:59:11,840
APPROACHES, ON SELECTING

1536
00:59:11,840 --> 00:59:12,680
INAPPROPRIATE DATA REPOSITORY AS

1537
00:59:12,680 --> 00:59:14,880
WELL AS LEARNING MORE ABOUT

1538
00:59:14,880 --> 00:59:17,760
THESE REPOSITORIES.

1539
00:59:17,760 --> 00:59:18,440
THERE'S ALSO BUDGETING AND HOW

1540
00:59:18,440 --> 00:59:21,000
DO YOU WRITE OR DO YOU THINK

1541
00:59:21,000 --> 00:59:22,800
ABOUT BUDGETING FOR DATA SHARING

1542
00:59:22,800 --> 00:59:24,120
AND MANAGING, AS FAR AS HOW DO

1543
00:59:24,120 --> 00:59:25,720
YOU WRITE A SPECIFIC PLAN AND WE

1544
00:59:25,720 --> 00:59:27,520
HAVE A TEMPLATE FOR EXAMPLE, FOR

1545
00:59:27,520 --> 00:59:29,720
HOW SUCH A PLAN SHOULD BE PUT

1546
00:59:29,720 --> 00:59:30,080
TOGETHER.

1547
00:59:30,080 --> 00:59:32,320
NOW, BACK WHEN THE POLICY WAS

1548
00:59:32,320 --> 00:59:34,840
RELEASED, IN OCTOBER OF 2020, WE

1549
00:59:34,840 --> 00:59:37,600
IDENTIFIED THEN WHAT WOULD BE

1550
00:59:37,600 --> 00:59:38,600
THE APPROPRIATE ELEMENTS OF A

1551
00:59:38,600 --> 00:59:40,840
DATA MANAGEMENT AND SHARING PLAN

1552
00:59:40,840 --> 00:59:42,320
AND THIS IS--THESE ARE THE

1553
00:59:42,320 --> 00:59:44,720
ELEMENTS AT A HIGH LEVEL, WHAT

1554
00:59:44,720 --> 00:59:46,680
TYPE OF DATA, RELATED TOOLSOR

1555
00:59:46,680 --> 00:59:47,800
SOFTWARE CODE THAT MAY BE

1556
00:59:47,800 --> 00:59:50,040
NECESSARY TO ACCESS AND WORK

1557
00:59:50,040 --> 00:59:51,640
WITH THE DATA, WHAT STANDARDS

1558
00:59:51,640 --> 00:59:52,680
ARE BEING USED, WHERE IS THE

1559
00:59:52,680 --> 00:59:56,520
DATA GOING TO BE STORED, WHAT

1560
00:59:56,520 --> 00:59:58,600
REPOSITORIES, ARE THERE GOING TO

1561
00:59:58,600 --> 01:00:00,040
BE--WHAT ARE THE RULES UNDER

1562
01:00:00,040 --> 01:00:03,960
ACCESS, SO SOME DATA MAY BE

1563
01:00:03,960 --> 01:00:04,560
READY, SOMEBODY COULD DOWNLOAD

1564
01:00:04,560 --> 01:00:06,320
IT AND USE IT AND THERE MAY BE

1565
01:00:06,320 --> 01:00:07,400
OTHER KINDS OF DATA WHERE

1566
01:00:07,400 --> 01:00:10,080
THERE'S SOME KIND OF CONTROLLED

1567
01:00:10,080 --> 01:00:10,360
ACCESS.

1568
01:00:10,360 --> 01:00:12,400
AND THEN, WHAT WILL BE THE

1569
01:00:12,400 --> 01:00:15,240
OVERSIGHT, YOU KNOW, HOW DO WE

1570
01:00:15,240 --> 01:00:17,760
MAKE SURE THAT THE PLAN WILL BE

1571
01:00:17,760 --> 01:00:19,040
COMPLIED WITH.

1572
01:00:19,040 --> 01:00:22,160
ONE BIG ISSUE, IS WHAT KIND OF

1573
01:00:22,160 --> 01:00:23,720
REPOSITORY SHOULD YOU USE.

1574
01:00:23,720 --> 01:00:28,480
SO WE STRONGLY ENCOURAGE THE USE

1575
01:00:28,480 --> 01:00:29,800
OF ESTABLISHED REPOSITORIES.

1576
01:00:29,800 --> 01:00:32,320
NOT A WEBSITE ON THE--NOT AN

1577
01:00:32,320 --> 01:00:33,800
EXCEL SPREADSHEET ON THE

1578
01:00:33,800 --> 01:00:34,640
LABORATORY WEBSITE BUT FOR

1579
01:00:34,640 --> 01:00:36,680
EXAMPLE, IT COULD BE A

1580
01:00:36,680 --> 01:00:37,560
REPOSITORY THAT YOUR OWN

1581
01:00:37,560 --> 01:00:38,320
INSTITUTION RUNS AND WE KNOW

1582
01:00:38,320 --> 01:00:40,400
THAT A NUMBER OF INSTITUTIONS

1583
01:00:40,400 --> 01:00:42,560
HAVE PUT TOGETHER SOME

1584
01:00:42,560 --> 01:00:44,920
OUTSTANDING REPOSITORIES, NOW IN

1585
01:00:44,920 --> 01:00:46,400
SOME CASES, SOME FOAs WILL

1586
01:00:46,400 --> 01:00:52,120
SAY, YOU  YOU MUST USE XYZ REPOY

1587
01:00:52,120 --> 01:00:54,800
AND IT MAY BE AN NIH REPOSITORY

1588
01:00:54,800 --> 01:00:57,080
AND THAT MAKES THE DECISION

1589
01:00:57,080 --> 01:00:59,640
REALLY VERY SIMPLE. 

1590
01:00:59,640 --> 01:01:02,760
SO THERE ARE A WIDE VARIETY OF

1591
01:01:02,760 --> 01:01:03,560
REPOSITORIES AVAILABLE, ALL OF

1592
01:01:03,560 --> 01:01:04,720
THIS INFORMATION IS ON THE

1593
01:01:04,720 --> 01:01:06,920
WEBSITE. 

1594
01:01:06,920 --> 01:01:08,800
THERE ARE NIH SUPPORTED

1595
01:01:08,800 --> 01:01:11,360
REPOSITORIES AND SOME OF THEM

1596
01:01:11,360 --> 01:01:12,200
ARE SPECIAL REPOSITORIES,

1597
01:01:12,200 --> 01:01:14,720
PERHAPS THE 1 THAT'S MOST WELL

1598
01:01:14,720 --> 01:01:16,920
KNOWN IS DBGAP WHICH IS RUN BY

1599
01:01:16,920 --> 01:01:18,720
THE NATIONAL LIBRARY OF

1600
01:01:18,720 --> 01:01:19,960
MEDICINE.

1601
01:01:19,960 --> 01:01:21,000
BIOLINK IS THE REPOSITORY THAT

1602
01:01:21,000 --> 01:01:24,440
IS USED BY NHLBI, AND THAT WAS

1603
01:01:24,440 --> 01:01:26,240
THAT PAPER THEY SHOWED YOU

1604
01:01:26,240 --> 01:01:28,600
EARLIER TODAY IS THAT THE

1605
01:01:28,600 --> 01:01:29,960
BIOLINK REPOSITORY AND THEN

1606
01:01:29,960 --> 01:01:34,200
THERE ARE OTHER REPOSITORIES.

1607
01:01:34,200 --> 01:01:35,880
WE POINT OUT THAT A NUMBER OF

1608
01:01:35,880 --> 01:01:43,160
INSTITUTIONS AND IN PARTICULAR

1609
01:01:43,160 --> 01:01:44,680
INSTITUTIONAL LIBRARIES DON'T

1610
01:01:44,680 --> 01:01:46,880
MISS OUT, PUB MED CENTRAL CAN BE

1611
01:01:46,880 --> 01:01:48,280
A DATA REPOSITORY BUT THIS IS

1612
01:01:48,280 --> 01:01:49,240
ONLY FOR RELATIVELY SMALL DATA

1613
01:01:49,240 --> 01:01:51,600
SETS AND THEN THERE ARE A

1614
01:01:51,600 --> 01:01:52,320
VARIETY OF GENERALIST

1615
01:01:52,320 --> 01:01:54,120
REPOSITORIES AND WE'RE NOT

1616
01:01:54,120 --> 01:02:00,320
ENDORSING ANY 1 OF THESE BUT

1617
01:02:00,320 --> 01:02:01,280
THESE ARE REPOSITORIES THAT ARE

1618
01:02:01,280 --> 01:02:03,160
OUT THERE, AND WIDELY UNUSED.

1619
01:02:03,160 --> 01:02:04,280
ALL RIGHT, 1 OF THE BIG

1620
01:02:04,280 --> 01:02:06,160
QUESTIONS IS COST.

1621
01:02:06,160 --> 01:02:09,000
SO WE DO ALLOW FOR AND IN FACT,

1622
01:02:09,000 --> 01:02:13,320
WE EXPLICITLY CALL FOR BUDGETING

1623
01:02:13,320 --> 01:02:15,240
FROM DIRECT COSTS, FOR

1624
01:02:15,240 --> 01:02:17,840
SUPPORTING DATA MANAGEMENT AND

1625
01:02:17,840 --> 01:02:18,160
SHARING.

1626
01:02:18,160 --> 01:02:20,200
THERE ARE SOME COSTS THAT ARE

1627
01:02:20,200 --> 01:02:21,920
EXPLICITLY ALLOWED LIKE COSTS

1628
01:02:21,920 --> 01:02:23,160
FOR CURATING DATA, PRESERVING

1629
01:02:23,160 --> 01:02:27,280
IT, SHARING IT, AS WELL AS LOCAL

1630
01:02:27,280 --> 01:02:28,080
CONSIDERATIONS.

1631
01:02:28,080 --> 01:02:30,840
THIS IS NOT TO BE CONFUSED WITH

1632
01:02:30,840 --> 01:02:33,040
CERTAIN KINDS OF INDIRECT COSTS

1633
01:02:33,040 --> 01:02:34,240
SO INFRASTRUCTURE COSTS, SO FOR

1634
01:02:34,240 --> 01:02:35,880
EXAMPLE, COSTS OF THE LIBRARY,

1635
01:02:35,880 --> 01:02:39,200
THAT'S AN INDIRECT COST AND THAT

1636
01:02:39,200 --> 01:02:40,040
SHOULD REMAIN THE SAME.

1637
01:02:40,040 --> 01:02:43,920
THERE'S BEEN A LOT OF WORK DONE

1638
01:02:43,920 --> 01:02:45,520
ON BUDGETING MUCH THE NATIONAL

1639
01:02:45,520 --> 01:02:46,520
LIBRARY OF MEDICINE COMMISSIONED

1640
01:02:46,520 --> 01:02:50,360
A STUDY BY THE NATIONAL ACADEMY

1641
01:02:50,360 --> 01:02:51,840
OF SCIENTISTS THAT IS OUT THERE,

1642
01:02:51,840 --> 01:02:53,360
BUDGETING FOR DATA MANAGEMENT

1643
01:02:53,360 --> 01:02:54,280
AND SHARING AND WE ANTICIPATE

1644
01:02:54,280 --> 01:02:55,880
THAT THERE WILL BE A LOT OF

1645
01:02:55,880 --> 01:02:58,600
LEARNING AS WE MOVE ALONG.

1646
01:02:58,600 --> 01:02:59,720
ALL RIGHT, NOW THE NEXT THING I

1647
01:02:59,720 --> 01:03:01,400
WANT TO TALK ABOUT ARE THE

1648
01:03:01,400 --> 01:03:02,400
MECHANICS, HOW WILL THIS

1649
01:03:02,400 --> 01:03:04,520
ACTUALLY WORK.

1650
01:03:04,520 --> 01:03:06,280
SO, WHEN AN APPLICATION IS

1651
01:03:06,280 --> 01:03:07,680
SUBMITTED WITH THE APPLICATION,

1652
01:03:07,680 --> 01:03:10,560
THERE NEEDS TO BE AN ATTACHMENT,

1653
01:03:10,560 --> 01:03:12,480
WHICH IS THE DATA SHARING AND

1654
01:03:12,480 --> 01:03:14,480
MANAGEMENT PLAN.

1655
01:03:14,480 --> 01:03:18,680
AND WE HAVE ON OUR WEBSITE, WE

1656
01:03:18,680 --> 01:03:21,240
HAVE A, WELL, WHAT'S NOT A DRAFT

1657
01:03:21,240 --> 01:03:23,160
BUT LIKELY WILL BE APPROVED BY

1658
01:03:23,160 --> 01:03:24,760
OMB, WE HAVE A SUGGESTION FOR

1659
01:03:24,760 --> 01:03:26,880
HOW YOU WOULD PUT SUCH A PLAN

1660
01:03:26,880 --> 01:03:28,400
TOGETHER, AND THAT SUGGESTION IS

1661
01:03:28,400 --> 01:03:29,680
LARGELY BASED ON THE GUIDE

1662
01:03:29,680 --> 01:03:32,000
NOTICES THAT WE PUT OUT BACK IN

1663
01:03:32,000 --> 01:03:32,560
OCTOBER OF 2020.

1664
01:03:32,560 --> 01:03:33,640
SO THAT COMES IN AND THEN THE

1665
01:03:33,640 --> 01:03:37,360
OTHER THING THAT COMES IN, IS A

1666
01:03:37,360 --> 01:03:39,120
BRIEF BUDGET JUSTIFICATION AND

1667
01:03:39,120 --> 01:03:40,880
SO, THERE ARE 2 PARTS TO THIS, 1

1668
01:03:40,880 --> 01:03:44,080
IS THE ACTUAL PLAN ITSELF, AND

1669
01:03:44,080 --> 01:03:45,720
THAT TYPICALLY WILL BE ABOUT 2

1670
01:03:45,720 --> 01:03:51,920
PAGES AND THEN THERE WILL BE A

1671
01:03:51,920 --> 01:03:53,320
BRIEF NARRATIVE FOR THE BUDGET

1672
01:03:53,320 --> 01:03:54,080
JUSTIFICATION AND THEN WHAT WILL

1673
01:03:54,080 --> 01:03:55,560
HAPPEN IS WHEN THE APPLICATION

1674
01:03:55,560 --> 01:03:57,160
COMES IN, IF IT GETS TO A POINT

1675
01:03:57,160 --> 01:03:59,000
WHERE IT LOOKS LIKE IT'S GOING

1676
01:03:59,000 --> 01:04:03,000
TO BE FUNDED, OUR STAFF WILL

1677
01:04:03,000 --> 01:04:04,400
ASSESS THE MANAGEMENT AND

1678
01:04:04,400 --> 01:04:05,920
SHARING PLAN AND IF IT'S OKAY,

1679
01:04:05,920 --> 01:04:08,080
THEN WE'RE GOOD AND THAT PLAN

1680
01:04:08,080 --> 01:04:09,200
WILL THEN BE INCORPORATED INTO

1681
01:04:09,200 --> 01:04:11,960
THE TERMS AND CONDITIONS OF

1682
01:04:11,960 --> 01:04:13,280
AWARD, AND IF--IF THEY HAVE

1683
01:04:13,280 --> 01:04:15,040
CONCERNS ABOUT IT OR QUESTIONS

1684
01:04:15,040 --> 01:04:16,640
ABOUT IT, THEN THAT WOULD BE A

1685
01:04:16,640 --> 01:04:18,600
DISCUSSION THAT WILL HAPPEN

1686
01:04:18,600 --> 01:04:21,720
BETWEEN THE NIH STAFF AND THE

1687
01:04:21,720 --> 01:04:23,520
POETIC TEBTIAL RECIPIENT.

1688
01:04:23,520 --> 01:04:25,240
SO, THIS IS--THIS IS AVAILABLE

1689
01:04:25,240 --> 01:04:29,840
NOW, PUBLICLY, THIS IS--WE HAVE

1690
01:04:29,840 --> 01:04:31,920
A DRAFT OF WHAT DATA SHARING AND

1691
01:04:31,920 --> 01:04:33,280
MANAGEMENT PLAN SHOULD LOOK

1692
01:04:33,280 --> 01:04:35,880
LIKE, THE FORMAT HERE IS

1693
01:04:35,880 --> 01:04:37,200
OPTIONAL, BUT IT'S FAIRLY

1694
01:04:37,200 --> 01:04:39,280
STRAIGHT FORWARD, IT SHOULD BE

1695
01:04:39,280 --> 01:04:40,840
NO MORE THAN 2 PAGES IN LENGTH.

1696
01:04:40,840 --> 01:04:46,160
WE THEN ALSO HAVE SPECIFIC

1697
01:04:46,160 --> 01:04:47,240
PLACES IN OUR ELECTRONIC

1698
01:04:47,240 --> 01:04:49,880
INTERFACES WHERE THE PLAN WOULD

1699
01:04:49,880 --> 01:04:52,680
BE ATTACHED AND ALSO WHERE THE

1700
01:04:52,680 --> 01:04:55,160
BUDGET INFORMATION WOULD BE

1701
01:04:55,160 --> 01:04:59,720
ATTACHED SO THAT'S ALL NOW SET

1702
01:04:59,720 --> 01:05:01,800
UP, THE PLAN ITSELF ONCE IT IS

1703
01:05:01,800 --> 01:05:02,920
APPROVED BECOMES A DETERMINED

1704
01:05:02,920 --> 01:05:04,160
CONDITION OF THE AWARD AND LIKE

1705
01:05:04,160 --> 01:05:06,160
ALL THERMOGENESISES AND

1706
01:05:06,160 --> 01:05:07,040
CONDITIONS OF AWARD--TERMS AND

1707
01:05:07,040 --> 01:05:08,600
CONDITIONS OF AWARD WILL BE

1708
01:05:08,600 --> 01:05:10,200
CONSIDEREDDA THE TIME OF

1709
01:05:10,200 --> 01:05:11,520
PROGRESS REPORTS AND IF THERE'S

1710
01:05:11,520 --> 01:05:13,200
A FAILURE TO COMPLY, WE CAN DEAL

1711
01:05:13,200 --> 01:05:16,840
WITH IT JUST LIKE WE WOULD DEAL

1712
01:05:16,840 --> 01:05:18,040
WITH ANY OTHER NONCOMPLIANCE

1713
01:05:18,040 --> 01:05:18,280
CONCERN.

1714
01:05:18,280 --> 01:05:19,520
ALL RIGHT, THERE'S A LOT GOING

1715
01:05:19,520 --> 01:05:23,320
ON, THERE'S BEEN A LOT GOING ON,

1716
01:05:23,320 --> 01:05:24,840
1 IS THAT WE'RE GIVING TALKS

1717
01:05:24,840 --> 01:05:26,680
LIKE WHAT I'M DOING RIGHT NOW,

1718
01:05:26,680 --> 01:05:28,960
THERE HAVE BEEN WEBINARS,

1719
01:05:28,960 --> 01:05:34,760
THERE'S OF COURSE THE WEBPAGE,

1720
01:05:34,760 --> 01:05:36,600
WE JUST PUT OUT BY THE WAY, A

1721
01:05:36,600 --> 01:05:37,840
GUIDE NOTICE ABOUT HARMONIZATION

1722
01:05:37,840 --> 01:05:39,240
WITH THE GENOME DATA SHARING

1723
01:05:39,240 --> 01:05:41,120
POLICY, I THINK THAT WENT OUT

1724
01:05:41,120 --> 01:05:47,240
ABOUT A WEEK OR SO AGO AND YOU

1725
01:05:47,240 --> 01:05:48,040
KNOW WE STRONGLY ENCOURAGE

1726
01:05:48,040 --> 01:05:50,240
PEOPLE YOU KNOW TO LOOK AT THE

1727
01:05:50,240 --> 01:05:52,800
RESOURCES THAT ARE THERE, ALSO,

1728
01:05:52,800 --> 01:05:55,760
TALK TO YOUR LIBRARY, WE KNOW

1729
01:05:55,760 --> 01:05:57,800
THAT A NUMBER OF UNIVERSITY

1730
01:05:57,800 --> 01:05:58,880
LIBRARIES, AND MEDICAL SCHOOL

1731
01:05:58,880 --> 01:06:01,000
LIBRARIES ARE DOING ABSOLUTELY

1732
01:06:01,000 --> 01:06:02,000
FANTASTIC WORK IN THIS AREA, SO

1733
01:06:02,000 --> 01:06:05,080
THAT MAY BE A VERY VALUABLE

1734
01:06:05,080 --> 01:06:06,680
RESOURCE, A LOT OF INTEREST IN

1735
01:06:06,680 --> 01:06:07,160
THIS.

1736
01:06:07,160 --> 01:06:08,680
THIS IS A PAPER FROM

1737
01:06:08,680 --> 01:06:10,280
NORTHWESTERN UNIVERSITY, IT JUST

1738
01:06:10,280 --> 01:06:12,040
CAME OUT LAST MONTH, 10 SIMPLE

1739
01:06:12,040 --> 01:06:13,480
RULES FOR MAXIMIZING THE

1740
01:06:13,480 --> 01:06:14,800
RECOMMENDATIONS OF THE NIH DATA

1741
01:06:14,800 --> 01:06:16,680
MANAGEMENT AND SHARING PLAN.

1742
01:06:16,680 --> 01:06:18,200
THIS PAPER'S REALLY QUITE GOOD

1743
01:06:18,200 --> 01:06:19,880
AND IS WORTH LOOKING AT.

1744
01:06:19,880 --> 01:06:22,480
WE'VE HAD A NUMBER OF WEBINARS

1745
01:06:22,480 --> 01:06:24,240
AND WE HAVE ANOTHER 1 WHICH IS

1746
01:06:24,240 --> 01:06:26,760
COMING UP ON THURSDAY

1747
01:06:26,760 --> 01:06:27,680
SEPTEMBER 22nd.

1748
01:06:27,680 --> 01:06:29,400
THESE HAVE BEEN WELL ATTENDED,

1749
01:06:29,400 --> 01:06:30,880
WE'VE BEEN GETTING A LOT OF VERY

1750
01:06:30,880 --> 01:06:33,120
GOOD QUESTIONS AND FEEDBACK, AND

1751
01:06:33,120 --> 01:06:34,320
HERE ARE SOME OF THE RESOURCES

1752
01:06:34,320 --> 01:06:34,920
THAT ARE AVAILABLE.

1753
01:06:34,920 --> 01:06:36,720
SO I HOPE YOU FOUND THIS

1754
01:06:36,720 --> 01:06:38,600
INTERESTING AND BOB, I WILL STOP

1755
01:06:38,600 --> 01:06:43,240
AT THIS POINT AND TURN THIS BACK

1756
01:06:43,240 --> 01:06:44,120
OVER TO YOU.

1757
01:06:44,120 --> 01:06:46,160
>> THANKS A LOT MIKE, THAT
WAS

1758
01:06:46,160 --> 01:06:46,360
GREAT.

1759
01:06:46,360 --> 01:06:49,800
COULD WE TAKE DOWN THE SLIDE AND

1760
01:06:49,800 --> 01:06:50,440
SEE EACH OTHER.

1761
01:06:50,440 --> 01:06:51,480
>> SURE.

1762
01:06:51,480 --> 01:06:52,160
THERE YOU GO.

1763
01:06:52,160 --> 01:06:53,480
>> THERE ARE QUESTIONS FOR
MIKE,

1764
01:06:53,480 --> 01:06:55,720
I WILL KICK IT OFF, MIKE, HAVE

1765
01:06:55,720 --> 01:06:56,840
YOU DONE ANY--WHAT IS YOUR

1766
01:06:56,840 --> 01:07:00,480
THOUGHTS ABOUT THE BUDGETARY

1767
01:07:00,480 --> 01:07:01,400
CONSEQUENCES OF THIS?

1768
01:07:01,400 --> 01:07:03,320
AS INVESTIGATORS BEGIN TO ASK

1769
01:07:03,320 --> 01:07:05,000
FOR MONEY TO BE IN COMPLIANCE

1770
01:07:05,000 --> 01:07:06,560
WITH THE POLICY, DO YOU THINK IT

1771
01:07:06,560 --> 01:07:08,880
WILL HAVE A SIGNIFICANT

1772
01:07:08,880 --> 01:07:10,240
BUDGETARY EFFECT?

1773
01:07:10,240 --> 01:07:11,320
I REALIZE THAT'S--HAVE YOU NO

1774
01:07:11,320 --> 01:07:13,400
BASIS TO ANSWER THAT QUESTION

1775
01:07:13,400 --> 01:07:13,960
BUT I'M CURIOUS.

1776
01:07:13,960 --> 01:07:17,920
>> YEAH, WE THINK THAT FOR
MOST

1777
01:07:17,920 --> 01:07:20,000
WORK, THE BUDGETARY EFFECTS WILL

1778
01:07:20,000 --> 01:07:21,080
BE MODEST.

1779
01:07:21,080 --> 01:07:21,960
NOW OF COURSE THAT'S VERY

1780
01:07:21,960 --> 01:07:24,040
DIFFERENT WHERE WE'RE TALKING

1781
01:07:24,040 --> 01:07:28,480
ABOUT, YOU KNOW PEOPLE WHO ARE

1782
01:07:28,480 --> 01:07:29,600
PUTTING TOGETHER PEDABYTES OF

1783
01:07:29,600 --> 01:07:31,160
DATA AND THEY ALREADY KNOW THAT

1784
01:07:31,160 --> 01:07:32,440
AND THEY'RE AWARE OF THAT.

1785
01:07:32,440 --> 01:07:35,040
BUT WE THINK FOR MOST STUDIES,

1786
01:07:35,040 --> 01:07:38,880
THEY'LL BE REAL BUT THEY'LL BE

1787
01:07:38,880 --> 01:07:39,680
RELATIVELY MODEST AND OF COURSE

1788
01:07:39,680 --> 01:07:40,960
WHAT WILL HAPPEN IS OVER THE

1789
01:07:40,960 --> 01:07:42,480
FIRST 2 OR 3 CYCLES WE WILL GOET

1790
01:07:42,480 --> 01:07:43,600
A LOT OF DATA AND THEN WE WILL

1791
01:07:43,600 --> 01:07:46,040
BE ABLE TO TALK ABOUT THAT WITH

1792
01:07:46,040 --> 01:07:50,080
A BIT MORE AUTHORITY.

1793
01:07:50,080 --> 01:07:51,680
>> OKAY, THANKS.

1794
01:07:51,680 --> 01:07:52,400
BOB, BOB BROWN?

1795
01:07:52,400 --> 01:07:54,200
>> THANK YOU.

1796
01:07:54,200 --> 01:07:55,400
NICE PRESENTATION, VERY HELPFUL.

1797
01:07:55,400 --> 01:07:58,000
I THINK IT'S VERY GOOD THAT YOU

1798
01:07:58,000 --> 01:07:59,480
WILL HAVE PATHWAYS THROUGH THE

1799
01:07:59,480 --> 01:08:01,080
WEB SITE THAT WILL FACILITATE

1800
01:08:01,080 --> 01:08:04,200
THIS PROCESS, THE ONLY THING

1801
01:08:04,200 --> 01:08:06,040
WE'VE RUN INTO WITH PEOPLE

1802
01:08:06,040 --> 01:08:09,640
COMMITTED TO THE PROCESS, IS THE

1803
01:08:09,640 --> 01:08:12,040
WAI IN WHICH SHARING HAS DONE

1804
01:08:12,040 --> 01:08:14,600
OVER THE YEARS, SO THEN WE'VE

1805
01:08:14,600 --> 01:08:16,520
GIVEN LARGE SETS OF DATA TO THE

1806
01:08:16,520 --> 01:08:17,320
CONSORTIA THEN PROVIDE THE

1807
01:08:17,320 --> 01:08:18,520
SHARING INFORMATION AND SOME OF

1808
01:08:18,520 --> 01:08:22,560
OUR CONSENTS WHICH WE DID

1809
01:08:22,560 --> 01:08:23,280
COMPLETELY IN COMPLIANCE WITH

1810
01:08:23,280 --> 01:08:24,480
ALL OF THE APPROPRIATE

1811
01:08:24,480 --> 01:08:27,600
REGULATIONS AT THE TIME DO NOT

1812
01:08:27,600 --> 01:08:28,080
ADEQUATELY PROVIDE THE

1813
01:08:28,080 --> 01:08:29,800
INFORMATION THAT YOU NEED FOR

1814
01:08:29,800 --> 01:08:30,640
CONTEMPORARY CONSENTS FOR

1815
01:08:30,640 --> 01:08:30,880
SHARING.

1816
01:08:30,880 --> 01:08:32,400
SO IT WOULD BE NICE TO HAVE SOME

1817
01:08:32,400 --> 01:08:33,600
WAY TO WRESTLE WITH THAT

1818
01:08:33,600 --> 01:08:36,240
DEPICTED ON THE WEBSITE.

1819
01:08:36,240 --> 01:08:39,120
NYEAH, SO I BELIEVE IT IS--GREAT

1820
01:08:39,120 --> 01:08:39,440
QUESTION.

1821
01:08:39,440 --> 01:08:41,520
I BELIEVE IT'S ON THE WEBSITE

1822
01:08:41,520 --> 01:08:46,280
WHERE NIH HAS DEVELOPED SOME

1823
01:08:46,280 --> 01:08:48,720
SUGGESTED CONSENT LANGUAGE FOR

1824
01:08:48,720 --> 01:08:52,480
BROAD DATA SHARING, I'M 99% SURE

1825
01:08:52,480 --> 01:08:54,120
IT'S THERE, I KNOW WE PUT OUT A

1826
01:08:54,120 --> 01:08:55,200
GUIDE NOTICE IN WHICH WE TALKED

1827
01:08:55,200 --> 01:08:58,240
ABOUT IT AND THIS IS SOMETHING

1828
01:08:58,240 --> 01:09:00,440
THAT JOANY RUDDER WHO IS

1829
01:09:00,440 --> 01:09:02,400
DIRECTING NCATS AND MY

1830
01:09:02,400 --> 01:09:04,840
COLLEAGUES FROM OSP WORKED ON

1831
01:09:04,840 --> 01:09:05,800
FOR PRECISELY WHAT YOU'RE

1832
01:09:05,800 --> 01:09:06,960
TALKING ABOUT.

1833
01:09:06,960 --> 01:09:08,440
NOW OBVIOUSLY THIS DOESN'T

1834
01:09:08,440 --> 01:09:10,640
ADDRESS WHAT HAPPENED 10, 20, 30

1835
01:09:10,640 --> 01:09:12,040
YEARS AGO ACCIDENT, BUT YOU KNOW

1836
01:09:12,040 --> 01:09:15,080
HOPEFULLY WILL BE HELPFUL

1837
01:09:15,080 --> 01:09:16,440
PROSPECTIVELY.

1838
01:09:16,440 --> 01:09:18,960
>> THAT IS AN IMPORTANT
POINT.

1839
01:09:18,960 --> 01:09:19,600
ARNOLD?

1840
01:09:19,600 --> 01:09:20,720
>> YES, I APOLOGIZE, I MAY
HAVE

1841
01:09:20,720 --> 01:09:22,920
MISSED THIS BUT THE ISSUE I'VE

1842
01:09:22,920 --> 01:09:24,960
HAD WITH OPEN ACCESS PUBLICATION

1843
01:09:24,960 --> 01:09:27,040
IS THAT THE COST THAT THE

1844
01:09:27,040 --> 01:09:29,360
JOURNALS, DEMAND FOR OPEN ACCESS

1845
01:09:29,360 --> 01:09:31,600
PUBLICATIONS AND SOMETIMES

1846
01:09:31,600 --> 01:09:34,160
REQUIREMENTS ARE PUBLISHED WITH

1847
01:09:34,160 --> 01:09:35,680
OPEN ACCESS COMES UP AGAINST

1848
01:09:35,680 --> 01:09:37,880
THIS REALLY LARGE BARRIER FOR

1849
01:09:37,880 --> 01:09:38,520
PUBLICATION.

1850
01:09:38,520 --> 01:09:39,720
IS THERE ANY PROGRESS OR ANY

1851
01:09:39,720 --> 01:09:41,040
MOVEMENT IN TERMS OF WHAT THE

1852
01:09:41,040 --> 01:09:45,840
NIH CAN DO TO HELP MITIGATE

1853
01:09:45,840 --> 01:09:46,160
THAT?

1854
01:09:46,160 --> 01:09:47,320
>> THAT'S A GREAT
QUESTION,

1855
01:09:47,320 --> 01:09:49,760
OKAY, SO FIRST OF ALL, OPEN

1856
01:09:49,760 --> 01:09:51,520
ACCESS REFERS TO PUBLICATIONS

1857
01:09:51,520 --> 01:09:54,160
WHERE THE AUTHOR IS PAY THE

1858
01:09:54,160 --> 01:09:57,000
JOURNAL, IN IN CASES, SOME

1859
01:09:57,000 --> 01:09:58,760
JOURNALS ARE LIERKS ELIFE OR

1860
01:09:58,760 --> 01:09:59,920
[INDISCERNIBLE], THOSE ARE OPEN

1861
01:09:59,920 --> 01:10:01,600
ACCESS JOURNALS SO THE ONLY WAY

1862
01:10:01,600 --> 01:10:03,160
TO PUBLISH THERE IS YOU PAY THEM

1863
01:10:03,160 --> 01:10:05,360
AND THEN THEY PUBLISH THE PAPER.

1864
01:10:05,360 --> 01:10:06,960
THEN THERE ARE SOME JOURNALS

1865
01:10:06,960 --> 01:10:08,680
THAT ARE BEHIND A FIRE WALL BUT

1866
01:10:08,680 --> 01:10:11,120
YOU CAN PAY THEM A FEE, WE KNOW

1867
01:10:11,120 --> 01:10:13,400
THE FEES CAN RANGE FROM ANYWHERE

1868
01:10:13,400 --> 01:10:14,440
FROM 1000 TO $10,000, I IMAGINE

1869
01:10:14,440 --> 01:10:16,680
THAT MAY BE SOME THAT MAY BE

1870
01:10:16,680 --> 01:10:19,960
MORE, IN ORDER TO MAKE THE

1871
01:10:19,960 --> 01:10:22,840
ARTICLE OPEN.

1872
01:10:22,840 --> 01:10:24,440
NIH, NOW WITH CERTAIN

1873
01:10:24,440 --> 01:10:25,320
EXCEPTIONS.

1874
01:10:25,320 --> 01:10:27,040
THERE ARE SOME FOAs THAT DO

1875
01:10:27,040 --> 01:10:28,400
REQUIRE OPEN ACCESS BUT AS A

1876
01:10:28,400 --> 01:10:30,080
GENERAL RULE WE DO NOT REQUIRE

1877
01:10:30,080 --> 01:10:32,520
OPEN ACCESS, WHAT WE DO REQUIRE

1878
01:10:32,520 --> 01:10:35,240
AND PUBLIC ACCESS, AND PUBLIC

1879
01:10:35,240 --> 01:10:36,920
ACCESS MEANS THAT THE CONTENTS

1880
01:10:36,920 --> 01:10:40,840
OF A MACHINEUE SCRIPT GET

1881
01:10:40,840 --> 01:10:42,800
DEPOSITED IN PUB MED CENTRAL AND

1882
01:10:42,800 --> 01:10:44,320
GET RELEASED WITHIN 12 MONTHS

1883
01:10:44,320 --> 01:10:45,840
AND THAT'S SOMETHING WHERE THERE

1884
01:10:45,840 --> 01:10:46,680
IS NO FEE.

1885
01:10:46,680 --> 01:10:49,440
YOU KNOW BOB ALLUDED TO THIS NEW

1886
01:10:49,440 --> 01:10:52,320
OSTP MEMO, THE OSTP MEMO REFERS

1887
01:10:52,320 --> 01:10:55,240
TO PUBLIC ACCESS, NOT OPEN

1888
01:10:55,240 --> 01:10:56,680
ACCESS, BUT NONETHELESS, IT IS A

1889
01:10:56,680 --> 01:10:58,720
REALLY INTERESTING QUESTION,

1890
01:10:58,720 --> 01:11:00,120
THERE ARE SOME PEOPLE AROUND THE

1891
01:11:00,120 --> 01:11:04,760
WORLD WHO ARE CALLING FOR ALL

1892
01:11:04,760 --> 01:11:05,560
GOVERNMENT GRANTS, ALL

1893
01:11:05,560 --> 01:11:08,760
GOVERNMENT FUNDED RESEARCH TO BE

1894
01:11:08,760 --> 01:11:09,880
PUBLICIZED THROUGH OPEN ACCESS

1895
01:11:09,880 --> 01:11:11,000
AND THE I THINK THE POINT YOU

1896
01:11:11,000 --> 01:11:12,720
MAKE IS A REALLY GOOD 1.

1897
01:11:12,720 --> 01:11:14,480
YOU KNOW THE COST COULD START TO

1898
01:11:14,480 --> 01:11:15,600
GET TO BE VERY REAL.

1899
01:11:15,600 --> 01:11:18,160
WE THINK THAT RIGHT NOW, ABOUT

1900
01:11:18,160 --> 01:11:20,240
ONE-THIRD OF THE PAPERS THAT ARE

1901
01:11:20,240 --> 01:11:22,080
PUBLISHED BY NIH AUTHORS ARE

1902
01:11:22,080 --> 01:11:24,960
ALREADY OPEN ACCESS, WE

1903
01:11:24,960 --> 01:11:28,040
PUBLISHED--WELL, WE, NIH FUNDED

1904
01:11:28,040 --> 01:11:28,960
AUTHORS PUBLISH ABOUT 120,000

1905
01:11:28,960 --> 01:11:31,520
PAPERS A YEAR SO THAT MEANS

1906
01:11:31,520 --> 01:11:32,480
MAYBE ABOUT 30-40,000 PAPERS A

1907
01:11:32,480 --> 01:11:34,640
YEAR ARE ALREADY BEING PUBLISHED

1908
01:11:34,640 --> 01:11:36,320
OPEN ACCESS AND YOU KNOW THE

1909
01:11:36,320 --> 01:11:38,200
AVERAGE COST MAY BE SOMEWHERE

1910
01:11:38,200 --> 01:11:41,040
AROUND $3000, IT'S A LOT OF

1911
01:11:41,040 --> 01:11:41,320
MONEY.

1912
01:11:41,320 --> 01:11:43,120
>> ACTUALLY MIKE JUST SO
YOU

1913
01:11:43,120 --> 01:11:48,640
KNOW AT OUR LAST COUNCIL WE

1914
01:11:48,640 --> 01:11:50,200
INVITED JOURNAL EDITORS SOMEONE

1915
01:11:50,200 --> 01:11:53,880
FROM HOWARD HUGHES AND WE HAD AN

1916
01:11:53,880 --> 01:11:55,280
INTENSE DITION CUSHION ABOUT

1917
01:11:55,280 --> 01:11:57,840
OPEN ACCESS AS OPPOSED TO CLOSED

1918
01:11:57,840 --> 01:11:58,840
ACCESS, JOHN?

1919
01:11:58,840 --> 01:11:59,440
>> I APPLAUD THESE
EFFORTS,

1920
01:11:59,440 --> 01:12:00,600
THANK YOU FOR THE COMMENTS.

1921
01:12:00,600 --> 01:12:02,160
IT'S A GREAT DIRECTION AND I'M

1922
01:12:02,160 --> 01:12:03,880
PLEASED TO SEE THE AMOUNT OF

1923
01:12:03,880 --> 01:12:04,880
THOUGHT THAT'S GENERATED ON WITH

1924
01:12:04,880 --> 01:12:05,080
THIS.

1925
01:12:05,080 --> 01:12:07,400
I DO THINK THIS WILL HELP WITH

1926
01:12:07,400 --> 01:12:08,240
REPRODUCIBILITY BUT THERE IS AN

1927
01:12:08,240 --> 01:12:09,720
ISSUE THAT COMES UP WITH DATA

1928
01:12:09,720 --> 01:12:12,400
GET USED OVER AND OVER AGAIN.

1929
01:12:12,400 --> 01:12:14,320
WHERE YOU'RE RUNNING INTO A RISK

1930
01:12:14,320 --> 01:12:16,560
OF TYPE 1S STATISTICAL ERRORS

1931
01:12:16,560 --> 01:12:18,120
AND NORMALLY YOU CORRECT THOSE

1932
01:12:18,120 --> 01:12:19,320
WITH MULTIPLE COMPARISONS BUT

1933
01:12:19,320 --> 01:12:20,560
IT'S PERHAPS GOING TO BE

1934
01:12:20,560 --> 01:12:21,800
DIFFICULT TO KNOW HOW OFTEN DATA

1935
01:12:21,800 --> 01:12:23,800
SETS HAVE BEEN USED SO I JUST

1936
01:12:23,800 --> 01:12:25,120
WONDER IF THIS HAD COME UP IN

1937
01:12:25,120 --> 01:12:26,600
DISCUSSION AND WHETHER THERE

1938
01:12:26,600 --> 01:12:28,960
WILL BE SOME MECHANISM WHERE AN

1939
01:12:28,960 --> 01:12:29,640
INTERESTED PARTY COULD ACTUALLY

1940
01:12:29,640 --> 01:12:33,320
KNOW HOW MANY TIMES A DATA SET

1941
01:12:33,320 --> 01:12:34,200
HAS BEEN REUSED.

1942
01:12:34,200 --> 01:12:34,920
>> YEAH, THAT'S A GREAT
QUESTION

1943
01:12:34,920 --> 01:12:36,520
AND OF COURSE WE WOULD WANT TO

1944
01:12:36,520 --> 01:12:38,560
KNOW HOW OFTEN A DATA SET IS

1945
01:12:38,560 --> 01:12:40,120
BEING REUSED BECAUSE THAT'S

1946
01:12:40,120 --> 01:12:42,880
PERHAPS A MARKER OF ITS

1947
01:12:42,880 --> 01:12:44,960
INFLUENCE, AND YOU KNOW THAT

1948
01:12:44,960 --> 01:12:48,400
WILL BE VALUABLE FEEDBACK FOR

1949
01:12:48,400 --> 01:12:49,160
EVERYBODY.

1950
01:12:49,160 --> 01:12:50,840
SO, YOU KNOW 1 THING THAT WILL

1951
01:12:50,840 --> 01:12:52,280
BE VERY MUCH ENCOURAGING IS THAT

1952
01:12:52,280 --> 01:12:55,640
A DATA SET WOULD HAVE A DOI,

1953
01:12:55,640 --> 01:12:58,440
SOME KIND OF A DIGITAL--DIGITAL

1954
01:12:58,440 --> 01:13:00,240
MARKER AND THEN THAT DIGITAL

1955
01:13:00,240 --> 01:13:02,040
MARKER COULD THEN BE LINKED TO A

1956
01:13:02,040 --> 01:13:04,120
GRANT, COULD BE LINKED TO AN

1957
01:13:04,120 --> 01:13:05,360
INSTITUTION, COULD BE LINKED TO

1958
01:13:05,360 --> 01:13:06,240
A SCIENTIST, YOU COULD IMAGINE

1959
01:13:06,240 --> 01:13:10,680
FOR EXAMPLE, IF YOU HAVE A

1960
01:13:10,680 --> 01:13:13,040
PAPER, WITH AN ORCUT ID, THAT'S

1961
01:13:13,040 --> 01:13:15,600
THE AUTHOR AND THEN THAT AUTHOR

1962
01:13:15,600 --> 01:13:17,120
SAYS I'M USING XYZ DATA AND THAT

1963
01:13:17,120 --> 01:13:18,720
DATA HAS A DOI WHICH IS LINKED

1964
01:13:18,720 --> 01:13:20,880
TO IT, THEN WE WOULD BE ABLE TO

1965
01:13:20,880 --> 01:13:23,400
TRACK THE USE OF DATA JUST LIKE

1966
01:13:23,400 --> 01:13:26,160
WE TRACK CITATION OF PAPERS.

1967
01:13:26,160 --> 01:13:27,880
AND I THINK YOUR POINTS A REALLY

1968
01:13:27,880 --> 01:13:29,320
INTERESTING 1 THAT IF IT GETS

1969
01:13:29,320 --> 01:13:32,280
USED OVER AND OVER AGAIN, THE

1970
01:13:32,280 --> 01:13:33,200
RISK OF--MULTIPLE COMPARISON

1971
01:13:33,200 --> 01:13:34,400
PROBLEM, I THINK, MAY--YOU KNOW

1972
01:13:34,400 --> 01:13:36,560
SOMETHING THAT WE WOULD HAVE TO

1973
01:13:36,560 --> 01:13:37,480
THINK ABOUT.

1974
01:13:37,480 --> 01:13:38,280
>> YEAH, OF COURSE, THE
DANGER

1975
01:13:38,280 --> 01:13:40,400
IS THAT THE NEGATIVE RESULTS

1976
01:13:40,400 --> 01:13:41,800
WON'T GET PUBLISHED THAT WOULD

1977
01:13:41,800 --> 01:13:44,440
BE A DISCUSSION FOR A LATER

1978
01:13:44,440 --> 01:13:44,760
SESSION HERE.

1979
01:13:44,760 --> 01:13:45,680
>> YEAH, ACTUALLY, THE
LATER

1980
01:13:45,680 --> 01:13:48,760
SESSION WILL OCCUR IN ABOUT 3

1981
01:13:48,760 --> 01:13:50,240
MINUTES, BUT TIM WHY DON'T YOU

1982
01:13:50,240 --> 01:13:52,000
ASK YOUR QUESTION, TIM IS THE

1983
01:13:52,000 --> 01:13:53,160
PERSON WHO SPEARHEADED OUR

1984
01:13:53,160 --> 01:13:54,480
DISCUSSION OF OPEN ACCESS IN THE

1985
01:13:54,480 --> 01:13:58,160
LASTER COUNCIL AND HE'S FROM

1986
01:13:58,160 --> 01:13:58,480
HOWARD HUGHES.

1987
01:13:58,480 --> 01:13:59,800
>> MIKE, THANK YOU FOR THE

1988
01:13:59,800 --> 01:14:01,280
PRESENTATION, I WANT TO CLARIFY

1989
01:14:01,280 --> 01:14:02,800
SO THE WHITE HOUSE MEMO

1990
01:14:02,800 --> 01:14:04,200
STIPULATED IT'S ALL ABOUT PUBLIC

1991
01:14:04,200 --> 01:14:05,800
ASSET BUT THEY PUT IN THERE

1992
01:14:05,800 --> 01:14:07,920
THERE SHOULD BE NO DELAY FOR

1993
01:14:07,920 --> 01:14:08,720
ACCESSIBILITY.

1994
01:14:08,720 --> 01:14:11,040
SO THE CURRENT POLICY IS A 12

1995
01:14:11,040 --> 01:14:12,440
MONTH ACCEPTABLE DELAY, AND THE

1996
01:14:12,440 --> 01:14:14,880
JOURNALS ARE OKAY WITH THAT, BUT

1997
01:14:14,880 --> 01:14:16,680
WHAT HAPPENS WHEN THIS GETS

1998
01:14:16,680 --> 01:14:18,400
SHORTENED TO 0 DAYS DELIAISON

1999
01:14:18,400 --> 01:14:22,240
BETWEEN IT PUBLISHING AND

2000
01:14:22,240 --> 01:14:23,080
BECOMING OPEN?

2001
01:14:23,080 --> 01:14:24,000
>> YEAH THATTA WHAT WE'RE
IN THE

2002
01:14:24,000 --> 01:14:25,320
MIDDLE OF RIGHT NOW IS WHAT I

2003
01:14:25,320 --> 01:14:29,720
WILL SAY IS THAT WE HAVE BEEN

2004
01:14:29,720 --> 01:14:30,560
GIVEN A TIMELINE, I THINK WE

2005
01:14:30,560 --> 01:14:32,680
HAVE TO TURB IT IN BY FEBRUARY,

2006
01:14:32,680 --> 01:14:35,000
WE HAVE TO SUBMIT SOME PLAN TO

2007
01:14:35,000 --> 01:14:36,480
OSTP, I THINK THE MOST IMPORTANT

2008
01:14:36,480 --> 01:14:38,000
POINT TO MAKE RIGHT NOW IS STILL

2009
01:14:38,000 --> 01:14:39,840
VERY MUCH A WORK IN PROGRESS AND

2010
01:14:39,840 --> 01:14:41,680
WE'RE AT EARLY STAGES, IS THAT

2011
01:14:41,680 --> 01:14:43,840
THERE WILL BE OPPORTUNITY FOR

2012
01:14:43,840 --> 01:14:47,160
PUBLIC COMMENT.

2013
01:14:47,160 --> 01:14:47,440
>> OKAY.

2014
01:14:47,440 --> 01:14:50,280
THANK YOU.

2015
01:14:50,280 --> 01:14:51,680
>> OKAY, GINA, LET'S MAKE
THIS

2016
01:14:51,680 --> 01:14:53,680
THE LAST QUESTION AND THEN MOVE

2017
01:14:53,680 --> 01:14:54,040
ON TO SHAI.

2018
01:14:54,040 --> 01:14:55,360
>> I KNOW THERE MUST BE

2019
01:14:55,360 --> 01:14:59,120
GUIDELINES ON TO WHAT YOU

2020
01:14:59,120 --> 01:15:00,240
CONSIDER AN APPROPRIATE

2021
01:15:00,240 --> 01:15:02,520
REPOSITORY TO BE BUT IF SOME

2022
01:15:02,520 --> 01:15:05,760
RESEARCHER HAS PUT THEIR

2023
01:15:05,760 --> 01:15:06,560
REPOSITORY AND ON SOME

2024
01:15:06,560 --> 01:15:07,520
COMMERCIAL SITE AND THAT

2025
01:15:07,520 --> 01:15:11,600
COMMERCIAL SITE GOES DOWN, WHAT

2026
01:15:11,600 --> 01:15:13,160
IS THE--WHAT'S THE THOUGHT

2027
01:15:13,160 --> 01:15:14,040
PROCESS THERE?

2028
01:15:14,040 --> 01:15:15,840
>> YEAH, THAT'S A GREAT

2029
01:15:15,840 --> 01:15:16,320
QUESTION.

2030
01:15:16,320 --> 01:15:17,560
SO YES THERE WAS QUITE A BIT OF

2031
01:15:17,560 --> 01:15:21,080
WO, THAT WAS DONE ABOUT WHAT

2032
01:15:21,080 --> 01:15:22,240
CHARACTERIZES A GOOD REPOSITORY?

2033
01:15:22,240 --> 01:15:23,800
AND 1 OF THE DOCUMENTS THAT WAS

2034
01:15:23,800 --> 01:15:25,680
RELEASED BACK IN OCTOBER OF 2020

2035
01:15:25,680 --> 01:15:28,080
ACTUALLY WENT THROUGH THAT AND

2036
01:15:28,080 --> 01:15:29,920
THAT WAS BASED ON A THOROUGH

2037
01:15:29,920 --> 01:15:31,520
LITERALLURE REVIEW ON WHAT THOSE

2038
01:15:31,520 --> 01:15:32,560
CHARACTERISTICS ARE AND IN

2039
01:15:32,560 --> 01:15:33,720
INCLUDED IN THERE IS WHAT

2040
01:15:33,720 --> 01:15:35,720
HAPPENS TO DATA IF THE

2041
01:15:35,720 --> 01:15:36,920
REPOSITORY GOES BELLY UP, IS

2042
01:15:36,920 --> 01:15:38,760
THERE A WAY IN WHICH

2043
01:15:38,760 --> 01:15:46,000
SUSTAINABILITY CAN BE ASSURED?

2044
01:15:46,000 --> 01:15:46,920
>> OKAY, BEFORE WE--MIKE,
YOU

2045
01:15:46,920 --> 01:15:48,960
ARE MORE THAN WELCOME TO STAY

2046
01:15:48,960 --> 01:15:50,360
FOR SHAI'S TALK WHICH WILL BE

2047
01:15:50,360 --> 01:15:52,040
NEXT AND QUITE OVERLAPPING IN

2048
01:15:52,040 --> 01:15:53,160
EMERGINGS OF ITS IMPLICATIONS

2049
01:15:53,160 --> 01:15:58,160
WITH EVERYTHING YOU JUST SAID

2050
01:15:58,160 --> 01:15:59,000
AND THE OSTP DIRECTOR, WALTER DO

2051
01:15:59,000 --> 01:16:00,040
YOU WANT TO SAY ANYTHING BEFORE

2052
01:16:00,040 --> 01:16:07,960
WE GO OVER TO SHAI?

2053
01:16:07,960 --> 01:16:12,520
NO, I WILL JUST SAY THAT AS

2054
01:16:12,520 --> 01:16:13,880
EVERYBODY HERE KNOWS WE HAVE

2055
01:16:13,880 --> 01:16:16,160
BEEN WORKING REALLY HARD TO

2056
01:16:16,160 --> 01:16:17,240
REPRODUCE RIGOR AND ABILITY IN

2057
01:16:17,240 --> 01:16:19,560
OUR RESEARCH AND STARTED IN THE

2058
01:16:19,560 --> 01:16:21,840
OFFICE OF RESEARCH QUALITY THAT

2059
01:16:21,840 --> 01:16:24,360
SHAI LEADS AND SHAI WAS LEADING

2060
01:16:24,360 --> 01:16:26,160
OUR ENTRÉE INTO THIS SPACE, I

2061
01:16:26,160 --> 01:16:30,000
DON'T KNOW MAYBE 12 YEARS AGO

2062
01:16:30,000 --> 01:16:33,080
AND NOW WITH THE DATA SHARING

2063
01:16:33,080 --> 01:16:37,320
POLICY, COMING UP, YOU KNOW THE

2064
01:16:37,320 --> 01:16:39,680
IDEA OF DATA THAT'S

2065
01:16:39,680 --> 01:16:40,640
QUOTE-UNQUOTE POSSIBLE, AND GETS

2066
01:16:40,640 --> 01:16:42,160
INTO THE PUBLICATION AND THE

2067
01:16:42,160 --> 01:16:43,280
PUBLICATION CAN BE LINKED TO

2068
01:16:43,280 --> 01:16:45,920
WHERE THE DATA IS POSTED.

2069
01:16:45,920 --> 01:16:47,840
YOU KNOW THAT I THINK IS CLEAR

2070
01:16:47,840 --> 01:16:51,040
CUT, YOU KNOW GOING TO BE

2071
01:16:51,040 --> 01:16:52,400
BENEFICIAL, BUT, THE PROBLEM

2072
01:16:52,400 --> 01:16:54,640
WILL BE FOR DAT THAT DOESN'T

2073
01:16:54,640 --> 01:16:59,680
HAVE A LINK TO A  PUBLICATION

2074
01:16:59,680 --> 01:17:02,400
WHERE THAT MIGHT BE SOME OF THE

2075
01:17:02,400 --> 01:17:03,800
MOST FATHOMABLE DATA TO PREVENT

2076
01:17:03,800 --> 01:17:07,480
PEOPLE FROM GOING DOWN SIMILAR

2077
01:17:07,480 --> 01:17:09,840
RABBIT HOLES AND SO SHAI HAS

2078
01:17:09,840 --> 01:17:11,880
BEEN WORKING REALLY HARD ON HOW

2079
01:17:11,880 --> 01:17:14,320
TO SOLVE THAT SIDE OF THE

2080
01:17:14,320 --> 01:17:16,920
EQUATION FOR THE NIH DATA

2081
01:17:16,920 --> 01:17:17,200
POLICY.

2082
01:17:17,200 --> 01:17:17,680
SO SHAI?

2083
01:17:17,680 --> 01:17:19,200
>> SO I WAS ASKING ABOUT
IF YOU

2084
01:17:19,200 --> 01:17:20,480
HAD COMMENTS ABOUT WHAT MIKE WAS

2085
01:17:20,480 --> 01:17:22,480
SAYING BUT YOU DID FULFILL THAT

2086
01:17:22,480 --> 01:17:23,400
AND INTRODUCE SHAI WHICH IS

2087
01:17:23,400 --> 01:17:30,520
GREAT, I WILL JUST ADD 1 THING

2088
01:17:30,520 --> 01:17:34,320
WHICH IS SHAI SILBERBERG HAS HAD

2089
01:17:34,320 --> 01:17:36,680
AN ENORMOUS IMPACT ON THE RIGOR

2090
01:17:36,680 --> 01:17:40,480
IMPROVING AT OUR INSTITUTE, NIH,

2091
01:17:40,480 --> 01:17:41,560
JOURNALS, ET CETERA, ET CETERA.

2092
01:17:41,560 --> 01:17:45,520
SO OVER TO YOU SHAI.

2093
01:17:45,520 --> 01:17:47,320
AND HIS OFFICE ALSO INCLUDES

2094
01:17:47,320 --> 01:17:52,520
DEVIN CRAWFORD AND A NEW

2095
01:17:52,520 --> 01:17:52,960
ADDITION MARIA HOYE,.

2096
01:17:52,960 --> 01:17:54,840
>> SO I HAVE TO MOVE MY
CAMERA,

2097
01:17:54,840 --> 01:17:56,800
I HAVE 2 SCREENS HERE AND SPHR

2098
01:17:56,800 --> 01:17:58,200
SOME REASON IT'S INSISTING ON

2099
01:17:58,200 --> 01:17:59,680
PRESENT THANKSGIVING ON THE

2100
01:17:59,680 --> 01:18:03,640
OTHER SCREEN SO, OKAY, THERE I

2101
01:18:03,640 --> 01:18:03,920
AM.

2102
01:18:03,920 --> 01:18:05,600
SO GOOD AFTERNOON EVERYONE WHO'S

2103
01:18:05,600 --> 01:18:07,360
ON THE EAST COAST AND ALMOST

2104
01:18:07,360 --> 01:18:10,040
AFTERNOON IN THE WEST COAST IT'S

2105
01:18:10,040 --> 01:18:11,600
GREAT TO SEE YOU ALL ANDIME

2106
01:18:11,600 --> 01:18:15,840
HAPPY TO HAVE THE OPPORTUNITY TO

2107
01:18:15,840 --> 01:18:17,520
DISCUSS WITH YOU PUBLICATION

2108
01:18:17,520 --> 01:18:23,960
BIAS AND WHAT I WILL DO TODAY IS

2109
01:18:23,960 --> 01:18:24,760
BRIEFLY DEFINE TUB PUBLICATION

2110
01:18:24,760 --> 01:18:28,080
BIAS AND TALK ABOUT

2111
01:18:28,080 --> 01:18:29,200
SIGNIFICANCE, CONSEQUENCES OF

2112
01:18:29,200 --> 01:18:31,320
PUBLICATION BIAS, WHY IT HAS NOT

2113
01:18:31,320 --> 01:18:33,280
BEEN RESOLVED AND HOW

2114
01:18:33,280 --> 01:18:36,320
POTENTIALLY IT CAN BE ADDRESSED.

2115
01:18:36,320 --> 01:18:38,480
NOW IT'S IMPORTANT TO SAY THAT

2116
01:18:38,480 --> 01:18:41,840
WHAT I'M IDEAS I'M GOING TO

2117
01:18:41,840 --> 01:18:45,280
PRESENT TODAY, ARE NOT AN NINDS

2118
01:18:45,280 --> 01:18:46,160
FUNDING PROPOSAL.

2119
01:18:46,160 --> 01:18:48,520
THIS IS JUST A BRAIN CHILD OF

2120
01:18:48,520 --> 01:18:53,480
THE OFFICE OF RESEARCH QUALITY

2121
01:18:53,480 --> 01:18:55,040
OF HOW WE CAN ADDRESS

2122
01:18:55,040 --> 01:19:00,040
PUBLICATION BIAS AND HOW IT HAS

2123
01:19:00,040 --> 01:19:00,960
OBVIOUSLY RELEVANCE WITH THE

2124
01:19:00,960 --> 01:19:03,720
QUICK TALK WE HEARD FROM

2125
01:19:03,720 --> 01:19:05,000
DR. LAUER WHICH WAS HIGHLY

2126
01:19:05,000 --> 01:19:06,320
IMPORTANT AND TIMELY.

2127
01:19:06,320 --> 01:19:11,640
AND I WANT TO JUST SAY A COUPLE

2128
01:19:11,640 --> 01:19:12,800
THINGS ABOUT THIS NIH NOTICE FOR

2129
01:19:12,800 --> 01:19:15,080
DATA MANAGEMENT AND SHARING AND

2130
01:19:15,080 --> 01:19:21,360
THAT IS THAT, YOU KNOW, AS

2131
01:19:21,360 --> 01:19:23,360
WRITTEN IN THE NOTICE, IT'S NOT

2132
01:19:23,360 --> 01:19:26,560
ONLY ABOUT DATA THAT IS IN

2133
01:19:26,560 --> 01:19:30,200
PUBLISHED PAPERS, BUT ALSO

2134
01:19:30,200 --> 01:19:32,120
UNPUBLISHED DATA UNDERLYING

2135
01:19:32,120 --> 01:19:37,640
UNPUBLISHED PAPERS INCLUDING

2136
01:19:37,640 --> 01:19:38,480
UNPUBLISHED EXPERIMENTS,

2137
01:19:38,480 --> 01:19:39,120
INCLUDING EXPERIMENTS THAT DID

2138
01:19:39,120 --> 01:19:40,320
NOT SUPPORT THE WORKING

2139
01:19:40,320 --> 01:19:40,720
HYPOTHESIS.

2140
01:19:40,720 --> 01:19:42,080
AND THERE ARE 2-POINTS I WANT TO

2141
01:19:42,080 --> 01:19:43,840
MAKE THAT ARE RELEVANT TO OUR

2142
01:19:43,840 --> 01:19:45,480
CONVERSATION TODAY.

2143
01:19:45,480 --> 01:19:47,760
THE FIRST IS THAT IN THE

2144
01:19:47,760 --> 01:19:48,840
DEFINITION OF SCIENTIFIC DATA,

2145
01:19:48,840 --> 01:19:51,600
IT SAYS THAT RECORDING OF

2146
01:19:51,600 --> 01:19:53,080
FACTUAL MATERIALS COMMONLY

2147
01:19:53,080 --> 01:19:54,280
ACCEPTED IN THE SCIENTIFIC

2148
01:19:54,280 --> 01:19:55,800
COMMUNITY AS OF SUFFICIENT

2149
01:19:55,800 --> 01:19:59,880
QUALITY TO VALIDATE AND

2150
01:19:59,880 --> 01:20:00,720
REPLICATE RESEARCH FINDINGS, IN

2151
01:20:00,720 --> 01:20:02,480
OTHER WORDS IT WOULD BE FAIR TO

2152
01:20:02,480 --> 01:20:04,680
ASSUME THAT WHEN WE TALK ABOUT

2153
01:20:04,680 --> 01:20:05,960
SCIENTIFIC QUALITY, WE ASSUME

2154
01:20:05,960 --> 01:20:09,600
THAT THE DATA WAS OBTAINED USING

2155
01:20:09,600 --> 01:20:10,160
RIGOROUS METHODS ISSUES THE

2156
01:20:10,160 --> 01:20:12,320
DAILY BASIS THEA ISAN OITATED

2157
01:20:12,320 --> 01:20:15,600
AND NO DATA IS OMITTED WHICH

2158
01:20:15,600 --> 01:20:18,480
COULD JEOPARDIZE THE VALUE OF

2159
01:20:18,480 --> 01:20:24,000
UNDERLYING DAILY BASIS THEA.

2160
01:20:24,000 --> 01:20:24,280
--DATA.

2161
01:20:24,280 --> 01:20:25,800
THE OTHER POINT I WANT TO MAKE

2162
01:20:25,800 --> 01:20:26,840
IS THAT SCIENTIFIC RESEARCH

2163
01:20:26,840 --> 01:20:28,040
FINDINGS AND DATA ARE NOT 1 AND

2164
01:20:28,040 --> 01:20:32,080
THE SAME ASK THEY COULD NOT BE

2165
01:20:32,080 --> 01:20:33,160
DUPLICATED.

2166
01:20:33,160 --> 01:20:34,560
SO FOR EXAMPLE, IN ADDRESSING

2167
01:20:34,560 --> 01:20:36,520
NULL OR NEGATIVE FINDINGS

2168
01:20:36,520 --> 01:20:39,080
ACCIDENT IT CLERLY SAYS THAT THE

2169
01:20:39,080 --> 01:20:39,880
DATA UNDERLIES THE FINDINGS AND

2170
01:20:39,880 --> 01:20:45,000
THAT IS THE FOCUS OF THE NIH

2171
01:20:45,000 --> 01:20:47,000
POLICY IS THE DATA THAT

2172
01:20:47,000 --> 01:20:48,440
UNDERLIES THE FINDINGS, IN

2173
01:20:48,440 --> 01:20:52,840
CONTRAST IN A RECENT GOVERNMENT

2174
01:20:52,840 --> 01:20:54,440
ACCOUNTABILITY OFFICE REPORT,

2175
01:20:54,440 --> 01:20:55,720
THEY ENCOURAGE THE PUBLICATION

2176
01:20:55,720 --> 01:20:57,000
OF NULL RESEARCH RESULTS AND

2177
01:20:57,000 --> 01:21:03,000
THAT'S REALLY THE FOCUS OF THE

2178
01:21:03,000 --> 01:21:03,480
TALK TODAY.

2179
01:21:03,480 --> 01:21:07,560
SO THE NEED FOR DISCUSSING, AND

2180
01:21:07,560 --> 01:21:09,160
SHARING RESULTS THAT DO NOT

2181
01:21:09,160 --> 01:21:13,160
SUPPORT THE WORKING HYPOTHESIS,

2182
01:21:13,160 --> 01:21:13,920
IS BYNY MEANS, NEW.

2183
01:21:13,920 --> 01:21:18,400
WE CAN GO BACK TO 1865 TO

2184
01:21:18,400 --> 01:21:20,600
CLAUDE, BERNARD WHO SAID IF THE

2185
01:21:20,600 --> 01:21:22,840
HYPOTHESIS IS NOT VERIFIED AND

2186
01:21:22,840 --> 01:21:23,880
DISAPPEARS, THE FACTS WHICH IT

2187
01:21:23,880 --> 01:21:27,400
HAS ENABLED US TO FIND ARE

2188
01:21:27,400 --> 01:21:28,600
NONETHELESS ACQUIRED AS

2189
01:21:28,600 --> 01:21:29,160
INDESTRECTIBLE MATERIALS FOR

2190
01:21:29,160 --> 01:21:29,520
SCIENCE.

2191
01:21:29,520 --> 01:21:32,160
I THINK THIS IS A VERY STRONG

2192
01:21:32,160 --> 01:21:32,440
STATEMENT.

2193
01:21:32,440 --> 01:21:35,920
NOW SINCE THIS STATEMENT WAS

2194
01:21:35,920 --> 01:21:38,680
WRITTEN WELL BEFORE THE

2195
01:21:38,680 --> 01:21:40,520
STATISTICS REVOLUTION OR

2196
01:21:40,520 --> 01:21:41,800
NONHYPOTHESIS OF SIGNIFICANT

2197
01:21:41,800 --> 01:21:43,360
TESTING, OBVIOUSLY DID NOT SPEAK

2198
01:21:43,360 --> 01:21:46,320
ABOUT NULL RESULTS HERE.

2199
01:21:46,320 --> 01:21:49,360
HOWEVER, ALMOST A CENTURY LATER

2200
01:21:49,360 --> 01:21:51,800
AT TED STERLING SPECIFICALLY

2201
01:21:51,800 --> 01:21:53,360
DISCUSSED THE PERILS OF

2202
01:21:53,360 --> 01:21:54,600
STATISTICAL TESTING, HE

2203
01:21:54,600 --> 01:21:55,400
RULINNATED ANTIGENSED THAT THERE

2204
01:21:55,400 --> 01:21:57,280
IS SOME EVIDENCE IN FIELDS WHERE

2205
01:21:57,280 --> 01:21:59,360
STATISTICAL FIELDS OF TESTS ARE

2206
01:21:59,360 --> 01:22:01,120
COMMONLY USED, RESEARCH WHICH

2207
01:22:01,120 --> 01:22:02,160
YIELDS NONSIGNIFICANT RESULTS IS

2208
01:22:02,160 --> 01:22:02,840
NOT PUBLISHED.

2209
01:22:02,840 --> 01:22:04,840
AND IT GOES ON TO SAY THAT SUCH

2210
01:22:04,840 --> 01:22:06,320
RESEARCH BEING UNKNOWN TO OTHER

2211
01:22:06,320 --> 01:22:09,720
INVESTIGATORS, MAY BE REPEATEDLY

2212
01:22:09,720 --> 01:22:11,720
INDEPENDENTLY UNTIL EVENTUALLY,

2213
01:22:11,720 --> 01:22:13,480
BY CHANCE, A SIGNIFICANT RESULT

2214
01:22:13,480 --> 01:22:15,880
OCCURS IN THE AREA OF THE FIRST

2215
01:22:15,880 --> 01:22:18,440
KIND S&P PUBLISHED, WHAT THE

2216
01:22:18,440 --> 01:22:19,280
SECOND PARAGRAPH BASICALLY SAYS

2217
01:22:19,280 --> 01:22:23,120
IS THAT HE'S SPEAKING ABOUT

2218
01:22:23,120 --> 01:22:25,280
NONSIGNIFICANT RESULTS THAT ARE

2219
01:22:25,280 --> 01:22:26,400
DREW NONSIGNIFICANT RESULTS, NOT

2220
01:22:26,400 --> 01:22:26,760
BY CHANCE, OKAY?

2221
01:22:26,760 --> 01:22:29,240
AND THE QUESTION IS, YOU KNOW IF

2222
01:22:29,240 --> 01:22:32,320
THEY ARE NOT PUBLISHED, THEN HOW

2223
01:22:32,320 --> 01:22:35,360
DO WE DEFINE THIS PUBLICATION

2224
01:22:35,360 --> 01:22:37,080
BIAS AGAINST NONSIGNIFICANT

2225
01:22:37,080 --> 01:22:37,320
RESULTS.

2226
01:22:37,320 --> 01:22:38,840
AND THERE HAVE BEEN VARIOUS

2227
01:22:38,840 --> 01:22:40,680
VERSIONS FOR THE DEFINITION, I

2228
01:22:40,680 --> 01:22:43,000
PERSONALLY LIKE THE DEFINITION,

2229
01:22:43,000 --> 01:22:45,440
PUT FORWARD BY KAY DICKERSIN,

2230
01:22:45,440 --> 01:22:47,040
WHO SAID THAT PUBLICATION BIAS

2231
01:22:47,040 --> 01:22:48,760
IS THE TENDENCYOT PART OF

2232
01:22:48,760 --> 01:22:49,760
INVESTIGATORS, REVIEWERS AND

2233
01:22:49,760 --> 01:22:52,720
EDITORS TO SUBMIT OR ACCEPT

2234
01:22:52,720 --> 01:22:53,320
MANUSCRIPTS FOR PUBLICATION

2235
01:22:53,320 --> 01:22:54,680
BASED ON THE DIRECTION OR

2236
01:22:54,680 --> 01:22:55,880
STRENGTH OF THE STUDY FINDINGS.

2237
01:22:55,880 --> 01:23:02,160
THE REASON I FIND THIS COMPEL

2238
01:23:02,160 --> 01:23:05,320
SYSTEM BECAUSE KAY KICKERSIN IMP

2239
01:23:05,320 --> 01:23:07,440
IICATES THE REVIEWERS, EDITORS

2240
01:23:07,440 --> 01:23:10,280
AND INVESTIGATORRINGS AS

2241
01:23:10,280 --> 01:23:11,280
RESPONSIBLE FOR PUBLICATION

2242
01:23:11,280 --> 01:23:11,480
BIAS.

2243
01:23:11,480 --> 01:23:13,120
SO BEFORE I GO INTO, I WILL

2244
01:23:13,120 --> 01:23:15,720
DISCUSS WHO'S RESPONSIBLE FOR

2245
01:23:15,720 --> 01:23:17,360
THIS AND HOW, I THINK IT WOULD

2246
01:23:17,360 --> 01:23:20,520
BE WORTH WHILE TO LOOK AT THE

2247
01:23:20,520 --> 01:23:22,600
EXTENT OF PUBLICATION BIAS.

2248
01:23:22,600 --> 01:23:25,520
AND IN THIS REGARD, LET'S LOOK

2249
01:23:25,520 --> 01:23:32,360
AT THE WORDS OF BOB ROSENTHALL,

2250
01:23:32,360 --> 01:23:34,200
WHO WAS KNOWN FOR THE FILE

2251
01:23:34,200 --> 01:23:37,360
DRAWER PROBLEM, WHO SAYS, FORANY

2252
01:23:37,360 --> 01:23:38,160
GIVEN RESEARCH AREA 1 CANNOT

2253
01:23:38,160 --> 01:23:39,880
TELL HOW MANY STUDY VS BEEN

2254
01:23:39,880 --> 01:23:41,400
CONDUCTED BUT NEVER REPORTED.

2255
01:23:41,400 --> 01:23:43,280
THE EXTREME VIEW OF THE FILE

2256
01:23:43,280 --> 01:23:45,160
DRAWER PROBLEM IS THAT JOURNALS

2257
01:23:45,160 --> 01:23:46,680
ARE 50ED WITH 5% OF THE STUDIES

2258
01:23:46,680 --> 01:23:48,200
THAT SHOW TYPE 1 ERRORS WHILE

2259
01:23:48,200 --> 01:23:49,520
THE FILE DRAWERS ARE FILLED WITH

2260
01:23:49,520 --> 01:23:52,520
THE 95% OF THE STUDIES THAT NO

2261
01:23:52,520 --> 01:23:53,320
NONSIGNIFICANT RESULTSMENT SO

2262
01:23:53,320 --> 01:23:56,040
THIS IS EXTREMELY A SARCASTIC

2263
01:23:56,040 --> 01:23:57,120
VIEW ON PUBLICATION BIAS BUT

2264
01:23:57,120 --> 01:23:58,320
THERE'S 1 THING THAT'S VERY

2265
01:23:58,320 --> 01:24:01,720
CLEAR AND WE COULD ALL AGREE TO

2266
01:24:01,720 --> 01:24:01,960
HERE.

2267
01:24:01,960 --> 01:24:03,680
AND THAT IS THAT FOR ANY GIVEN

2268
01:24:03,680 --> 01:24:04,880
RESEARCH AREA OR CANNOT TELL HOW

2269
01:24:04,880 --> 01:24:06,200
MANY STUDIES HAVE BEEN COUNSEL

2270
01:24:06,200 --> 01:24:09,040
DUCTED BUT NEVER REPORTED,

2271
01:24:09,040 --> 01:24:09,320
RIGHT?

2272
01:24:09,320 --> 01:24:11,320
WE CAN KNOW WHAT IS NOT KNOWN

2273
01:24:11,320 --> 01:24:13,480
AND THEREFORE TO ESTIMATE THE

2274
01:24:13,480 --> 01:24:15,880
EXTENT OF PUBLICATION BIAS,

2275
01:24:15,880 --> 01:24:16,640
INVESTIGATORS DEVELOPED ALL

2276
01:24:16,640 --> 01:24:18,520
KINDSS OF MODELS THAT ARE BASED

2277
01:24:18,520 --> 01:24:19,840
ON VARIOUS ASSUMPTIONS AND

2278
01:24:19,840 --> 01:24:21,480
THAT'S WHY I FEEL UNCOMFORTABLE

2279
01:24:21,480 --> 01:24:23,320
BECAUSE ONCE YOU HAVE ALL THESE

2280
01:24:23,320 --> 01:24:24,000
ASSUMPTIONS, YOU DON'T REALLY

2281
01:24:24,000 --> 01:24:25,920
KNOW WHAT IS RIGHT AND WHAT IS

2282
01:24:25,920 --> 01:24:26,320
WRONG.

2283
01:24:26,320 --> 01:24:28,240
SO I PREFER GOOD OLD IMPERICAL

2284
01:24:28,240 --> 01:24:28,520
DATA.

2285
01:24:28,520 --> 01:24:31,960
AND I WILL GIVE YOU JUST 2

2286
01:24:31,960 --> 01:24:34,160
EXAMPLES OF THAT.

2287
01:24:34,160 --> 01:24:37,000
SO IN THIS STUDY BY

2288
01:24:37,000 --> 01:24:38,000
[INDISCERNIBLE] AND COLLEAGUES

2289
01:24:38,000 --> 01:24:40,960
THEY LOOK AT 2 DATABASES OF

2290
01:24:40,960 --> 01:24:43,520
ARTICLES THAT ARE RELATED TO

2291
01:24:43,520 --> 01:24:45,240
PROGNOSTIC MARKERS AND FOR BOTH

2292
01:24:45,240 --> 01:24:46,600
DATA SETS THEY FOUND THAT LESS

2293
01:24:46,600 --> 01:24:49,240
THAN 2% OF THE PAPERS WERE FULLY

2294
01:24:49,240 --> 01:24:50,320
NEGATIVE FOR ALL PRESENTED

2295
01:24:50,320 --> 01:24:51,840
RESULTS IN THE ABSTRACT.

2296
01:24:51,840 --> 01:24:52,280
OKAY?

2297
01:24:52,280 --> 01:24:54,320
THAT'S A VERY SMALL NUMBER.

2298
01:24:54,320 --> 01:24:58,480
IN THE SECOND PAPER, BY EMILY

2299
01:24:58,480 --> 01:24:59,960
[INDISCERNIBLE] AND COLLEAGUES,

2300
01:24:59,960 --> 01:25:01,360
THEY LOOK AT 525 UNIQUE

2301
01:25:01,360 --> 01:25:04,040
PUBLICATIONS OF ANIMAL STUDIES

2302
01:25:04,040 --> 01:25:05,200
OF ACUTE ESCHEMIC STROKE AND

2303
01:25:05,200 --> 01:25:08,200
THEY FOUND THAT ONLY 2% REPORTED

2304
01:25:08,200 --> 01:25:10,400
SIGNIFICANT EFFECT ON INFARCT

2305
01:25:10,400 --> 01:25:12,320
VOLUME AND ONLY 1.2% DID NOT

2306
01:25:12,320 --> 01:25:13,920
REPORT AT LEAST 1 SIGNIFICANT

2307
01:25:13,920 --> 01:25:14,200
FINDING.

2308
01:25:14,200 --> 01:25:17,480
I THINK IT'S INTERESTING HOW

2309
01:25:17,480 --> 01:25:19,880
SIMILAR THESE 2 NUMBERS ARE FROM

2310
01:25:19,880 --> 01:25:22,160
THESE 2 DIFFERENT STUDIES AND I

2311
01:25:22,160 --> 01:25:24,160
THINK IT WOULD BE FAIR TO SAY,

2312
01:25:24,160 --> 01:25:27,920
THAT IT'S HIGHLY UNLIKELY THAT

2313
01:25:27,920 --> 01:25:29,400
WHEN INVESTIGATOR COMES UP WITH

2314
01:25:29,400 --> 01:25:30,920
A HYPOTHESIS, THEY WILL BE

2315
01:25:30,920 --> 01:25:34,120
CORRECT 98% OF THE TIME.

2316
01:25:34,120 --> 01:25:37,160
SO CLEARLY, PUBLICATION BIAS IS

2317
01:25:37,160 --> 01:25:38,320
A SIGNIFICANT ISSUE, IF WE

2318
01:25:38,320 --> 01:25:39,720
ASSUME THAT HALF THE TIME

2319
01:25:39,720 --> 01:25:40,960
HYPOTHESIS ARE CORRECT, WE WOULD

2320
01:25:40,960 --> 01:25:44,680
BE MISSING A HUGE NUMBER OF

2321
01:25:44,680 --> 01:25:47,600
STUDIES WHICH BRINGS ME TO AN

2322
01:25:47,600 --> 01:25:49,920
EXERCISE OF TRYING TO

2323
01:25:49,920 --> 01:25:51,880
GUESSTIMATE OF THE IMPACT OF

2324
01:25:51,880 --> 01:25:55,040
PUBLICATION BIAS, SO, WHAT YOU

2325
01:25:55,040 --> 01:25:56,280
SEE HERE IS A FIGURE THAT YOU

2326
01:25:56,280 --> 01:26:00,080
KNOW I PULLED OUT OF THE NIH

2327
01:26:00,080 --> 01:26:01,720
REPORTER, WHICH SHOWS, THE

2328
01:26:01,720 --> 01:26:06,200
AMOUNT OF FUNDS THAT NIH SPENT

2329
01:26:06,200 --> 01:26:09,080
IN FISCAL YEAR 21 ON RO-1s AND

2330
01:26:09,080 --> 01:26:12,560
IN TOTAL IT WAS CLOSE TO 15

2331
01:26:12,560 --> 01:26:12,800
BILLION.

2332
01:26:12,800 --> 01:26:14,200
NOW IT WOULD BE VERY GENEROUS

2333
01:26:14,200 --> 01:26:16,240
AND SAY THAT LET'S ASSUME THAT

2334
01:26:16,240 --> 01:26:19,640
80% OF THE TIME WHEN YOU HAVE A

2335
01:26:19,640 --> 01:26:20,840
HYPOTHESIS, IT'S CORRECT AND

2336
01:26:20,840 --> 01:26:24,760
THAT HALF OF THE OTHER 20% THAT

2337
01:26:24,760 --> 01:26:27,760
LED TO NO RESULTS DON'T SEE THE

2338
01:26:27,760 --> 01:26:28,680
LIGHT OF DAY.

2339
01:26:28,680 --> 01:26:31,600
THEN YOU CAN ESTIMATE THAT

2340
01:26:31,600 --> 01:26:34,080
APPROXIMATELY THERE'S 1 AND HALF

2341
01:26:34,080 --> 01:26:35,520
BILLION DOLLARS, THE LOSS OF

2342
01:26:35,520 --> 01:26:37,200
KNOWLEDGE, JUST DUE TO RO-1

2343
01:26:37,200 --> 01:26:38,520
APPLICATIONS, NOW THIS IS

2344
01:26:38,520 --> 01:26:42,280
OBVIOUSLY A VERY SIMPLISTIC VIEW

2345
01:26:42,280 --> 01:26:44,080
ON THINGS, BUT GENEROSITY OF

2346
01:26:44,080 --> 01:26:48,440
ASIDE, IF WE NOW SAY, OKAY, HALF

2347
01:26:48,440 --> 01:26:50,760
THE TIME THE HYPOTHESIS IS

2348
01:26:50,760 --> 01:26:53,200
CORRECT AND 80% OF THE 1S THAT

2349
01:26:53,200 --> 01:26:54,080
DON'T YIELD POSITIVE RESULTS

2350
01:26:54,080 --> 01:26:56,440
DON'T SEE THE LIGHT OF DAY, THIS

2351
01:26:56,440 --> 01:26:59,800
NUMBER WOULD BE 4 FOLD LARGER.

2352
01:26:59,800 --> 01:27:00,000
OKAY?

2353
01:27:00,000 --> 01:27:01,160
NOW THIS IS JUST A DIRECT

2354
01:27:01,160 --> 01:27:02,640
ESTIMATE OF WHAT THE COST MIGHT

2355
01:27:02,640 --> 01:27:04,680
BE, BUT WE ALREADY HEARD FROM

2356
01:27:04,680 --> 01:27:07,080
TED STERLING THAT THERE'S

2357
01:27:07,080 --> 01:27:08,120
INCORRECT EFFECTS AND ACTUALLY

2358
01:27:08,120 --> 01:27:12,280
WALTER MENTIONED THIS AS WELL.

2359
01:27:12,280 --> 01:27:13,400
IF OTHER INVESTIGATORS AREN'T

2360
01:27:13,400 --> 01:27:14,800
AWARE THAT AN EXPERIMENT WAS

2361
01:27:14,800 --> 01:27:16,160
DONE AND YIELDED NO RESULTS,

2362
01:27:16,160 --> 01:27:19,280
THEY COULD REPEAT THE SAME

2363
01:27:19,280 --> 01:27:19,560
EXPERIMENT.

2364
01:27:19,560 --> 01:27:21,360
AND THEN SINCE THEY DON'T

2365
01:27:21,360 --> 01:27:22,840
PUBLISH IT, OTHERS WILL REPEAT

2366
01:27:22,840 --> 01:27:24,800
THE SAME EXPERIMENT SO THAT ADDS

2367
01:27:24,800 --> 01:27:29,440
TO THE EXPENSE OR COST OR LOSS

2368
01:27:29,440 --> 01:27:34,640
DUE TO PUBLICATION BY AS.--BIAS,

2369
01:27:34,640 --> 01:27:36,480
THERE'S OTHER ELEMENTS AS WELL.

2370
01:27:36,480 --> 01:27:38,040
SO TYPICALLY WHEN 1 WANTS TO

2371
01:27:38,040 --> 01:27:39,680
ADVANCE TO TRANSLATIONAL AND

2372
01:27:39,680 --> 01:27:44,200
CLINICAL STUDIES, YOU TRY TO GET

2373
01:27:44,200 --> 01:27:47,520
THE SENSE OF A SIZE OF A

2374
01:27:47,520 --> 01:27:48,960
PARTICULAR INTERVENTION AND YOU

2375
01:27:48,960 --> 01:27:49,560
GET INFORMATION FROM THE

2376
01:27:49,560 --> 01:27:50,520
LITERATE AND YOU ARE COME UP

2377
01:27:50,520 --> 01:27:52,800
WITH AN ESTIMATE OF THE EFFECT

2378
01:27:52,800 --> 01:27:53,000
SIZE.

2379
01:27:53,000 --> 01:27:57,600
NOW IF YOU'RE MISSING ALL THE

2380
01:27:57,600 --> 01:27:59,040
NULL RESULTS, USING THIS

2381
01:27:59,040 --> 01:28:00,440
INTERVENTION, THEN YOU CAN END

2382
01:28:00,440 --> 01:28:02,960
UP WITH THOSE LEADING OR

2383
01:28:02,960 --> 01:28:03,800
EXAGGERATED EFFECT SIZES AND

2384
01:28:03,800 --> 01:28:07,080
WHAT THIS WILL DO IS WILL LEAD

2385
01:28:07,080 --> 01:28:08,280
TO UNDERPOWERED FUTURE STUDIES

2386
01:28:08,280 --> 01:28:10,320
BECAUSE WHEN YOU CALCULATE THE

2387
01:28:10,320 --> 01:28:12,880
SAMPLE SIZE FOR STUDIES, YOU

2388
01:28:12,880 --> 01:28:14,480
TYPICALLY TAKE INTO

2389
01:28:14,480 --> 01:28:15,720
CONSIDERATION THE EXPECTED

2390
01:28:15,720 --> 01:28:16,560
EFFECT SIZE.

2391
01:28:16,560 --> 01:28:18,160
AND SINCE THERE ARE FEW OF THESE

2392
01:28:18,160 --> 01:28:20,280
ASKEDS WILL NOW BE UNDERPOWERED,

2393
01:28:20,280 --> 01:28:23,960
THEY COULD LEAD TO MISLEADING

2394
01:28:23,960 --> 01:28:26,880
RESULTS AND POSSIBLY EVEN TO

2395
01:28:26,880 --> 01:28:28,000
BASELESS CLINICAL TRIALS.

2396
01:28:28,000 --> 01:28:29,160
SO PUBLICATION BIAS CAN HAVE,

2397
01:28:29,160 --> 01:28:31,280
YOU KNOW A PRETTY SIGNIFICANT

2398
01:28:31,280 --> 01:28:35,320
EFFECT AND THE QUESTION IS, WHY

2399
01:28:35,320 --> 01:28:37,560
PEOPLE DON'T PUBLISH THEIR NULL

2400
01:28:37,560 --> 01:28:37,800
RESULTS.

2401
01:28:37,800 --> 01:28:39,240
SO WE IN THE OFFICE OF RESEARCH

2402
01:28:39,240 --> 01:28:40,680
QUALITY, WE LOOKED INTO THIS, TO

2403
01:28:40,680 --> 01:28:42,120
SEE WHAT'S IN THE LITERATURE,

2404
01:28:42,120 --> 01:28:45,080
AND COME UP WITH SOME OF OUR OWN

2405
01:28:45,080 --> 01:28:49,080
DATA, AND THE FIRST THING WE DID

2406
01:28:49,080 --> 01:28:53,080
IS WE LOOKED AT 175 NEUROSCIENCE

2407
01:28:53,080 --> 01:28:54,200
JOURNALS THAT DON'T PUBLISH

2408
01:28:54,200 --> 01:28:56,200
CLINICAL TRIALS AND ASKED, DO

2409
01:28:56,200 --> 01:28:57,680
THEY ENCOURAGE SUBMISSION OF

2410
01:28:57,680 --> 01:28:58,920
NULL RESULTS, SO WE WENT OVER

2411
01:28:58,920 --> 01:29:03,320
ALL THE DOCK YOU WANTS OF THESE

2412
01:29:03,320 --> 01:29:06,600
JOURNALS, AND FOUND THAT ONLY 12

2413
01:29:06,600 --> 01:29:08,360
OF THEM SPECIFICALLY RIDICULOUS

2414
01:29:08,360 --> 01:29:10,640
MEND OR SUPPORT THE PUBLICATION

2415
01:29:10,640 --> 01:29:11,320
OF NULL RESULTS.

2416
01:29:11,320 --> 01:29:14,840
WE REACHED OUT TO ALL 12

2417
01:29:14,840 --> 01:29:16,200
JOURNALS, TO ASK FOR

2418
01:29:16,200 --> 01:29:17,600
INFORMATION, HOW MANY NULL

2419
01:29:17,600 --> 01:29:19,560
RESULT PAPERS THEY PUBLISH, WE

2420
01:29:19,560 --> 01:29:21,360
GOT RESPONSES ONLY FROM 3 OF

2421
01:29:21,360 --> 01:29:23,200
THEM, AND AS YOU CAN SEE, THE

2422
01:29:23,200 --> 01:29:27,320
NUMBERS HERE ARE VERY SMALL.

2423
01:29:27,320 --> 01:29:27,720
OKAY?

2424
01:29:27,720 --> 01:29:31,240
SO THIS IS NOT VERY ENCOURAGING

2425
01:29:31,240 --> 01:29:34,040
BUT OBVIOUSLY WE DON'T KNOW HERE

2426
01:29:34,040 --> 01:29:37,640
WHY THE NUMBER IS SMALL.

2427
01:29:37,640 --> 01:29:38,920
IS IT EDITORIAL CHOICES, THE

2428
01:29:38,920 --> 01:29:41,600
DATA WAS NOT HIGH QUALITY OR

2429
01:29:41,600 --> 01:29:44,240
PERHAPS REVIEWERS, HAVE SOME

2430
01:29:44,240 --> 01:29:45,920
KIND OF BIAS AGAINST NULL

2431
01:29:45,920 --> 01:29:46,840
RESULTS.

2432
01:29:46,840 --> 01:29:48,400
AND IN THIS REGARD, THERE'S VERY

2433
01:29:48,400 --> 01:29:50,040
INTERESTING STUDY THAT WAS

2434
01:29:50,040 --> 01:29:52,120
CONDUCTED BY EMERCEON AND

2435
01:29:52,120 --> 01:29:52,840
COLLEAGUES, THEY GENERATED 2

2436
01:29:52,840 --> 01:29:55,400
VERSIONS OF A WELL DESIGNED

2437
01:29:55,400 --> 01:29:56,320
RANDOMIZED CONTROL TRIAL THAT

2438
01:29:56,320 --> 01:29:57,520
DIFFERED ONLY IN THE DIRECTION

2439
01:29:57,520 --> 01:29:59,920
OF THE FINDINGS OF THE PRINCIPAL

2440
01:29:59,920 --> 01:30:03,280
STUDY AND QUHA THEY DID IS THEY

2441
01:30:03,280 --> 01:30:05,680
SUBMITTED THIS 22 JOURNALS THAT

2442
01:30:05,680 --> 01:30:07,800
WERE PART OF THIS EXPERIMENT AND

2443
01:30:07,800 --> 01:30:10,560
THE JOURNALS IN TURN, SUBMITTED

2444
01:30:10,560 --> 01:30:13,200
THESE PAPERS THROUGH MANY

2445
01:30:13,200 --> 01:30:16,080
INVESTIGATORS FOR REVIEW, AND

2446
01:30:16,080 --> 01:30:17,520
RECEIVED RESPONSES FROM 210 OF

2447
01:30:17,520 --> 01:30:18,080
THEM.

2448
01:30:18,080 --> 01:30:19,320
NOW OBVIOUSLY EACH REVIEWER GOT

2449
01:30:19,320 --> 01:30:27,240
ONLY 1 VERSION OF THE PAPER,

2450
01:30:27,240 --> 01:30:28,120
RIGHT?

2451
01:30:28,120 --> 01:30:29,800
AND WHEN THEY COAALATED ALL THE

2452
01:30:29,800 --> 01:30:30,760
DATA, IF THEY RECEIVED PAPERS

2453
01:30:30,760 --> 01:30:33,680
THAT HAD A POSITIVE OUTCOME, 90%

2454
01:30:33,680 --> 01:30:35,760
OF THEM RECOMMENDED THE PAPER

2455
01:30:35,760 --> 01:30:37,480
FOR ACCEPTANCE, WHICH MEANS THIS

2456
01:30:37,480 --> 01:30:39,760
WAS--AND WE KNOW IT WAS, WHEN

2457
01:30:39,760 --> 01:30:40,800
THEY DESIGNED THIS VERY

2458
01:30:40,800 --> 01:30:43,200
CAREFULLY, THE STUDY AND IT WAS

2459
01:30:43,200 --> 01:30:44,440
A VERY GOOD PAPER, HOWEVER IF

2460
01:30:44,440 --> 01:30:48,840
THE RESULTS WERE NEGATIVE, ONLY

2461
01:30:48,840 --> 01:30:49,600
80% SUGGESTED RECOMMENDING THE

2462
01:30:49,600 --> 01:30:52,040
ACCEPTANCE OF THIS PAPER.

2463
01:30:52,040 --> 01:30:53,760
NOW I FIND THIS VERY DISTURBING

2464
01:30:53,760 --> 01:30:56,320
BECAUSE IF YOU THINK OF THOSE

2465
01:30:56,320 --> 01:30:58,280
PEOPLE WHO VOLUNTEER TO BE ON

2466
01:30:58,280 --> 01:31:01,160
THIS CLINICAL TRIAL, IN THE HOPE

2467
01:31:01,160 --> 01:31:03,560
OF ADVANCING MEDICAL TREATMENTS,

2468
01:31:03,560 --> 01:31:05,520
AND THEN, ALMOST 1 IN 5

2469
01:31:05,520 --> 01:31:06,600
REVIEWERS SAID, OH THIS DATA

2470
01:31:06,600 --> 01:31:11,280
DOESN'T NEED TO BE SHARED WITH

2471
01:31:11,280 --> 01:31:11,920
THE SCIENTIFIC COMMUNITY BECAUSE

2472
01:31:11,920 --> 01:31:14,760
YOU KNOW THE RESULTS ARE

2473
01:31:14,760 --> 01:31:16,160
NEGATIVE, OKAY?

2474
01:31:16,160 --> 01:31:16,680
IT'S PRETTY DISTURBING.

2475
01:31:16,680 --> 01:31:18,040
SO ANYWAY, SO I SHOWED YOU SO

2476
01:31:18,040 --> 01:31:20,200
FAR THAT THE JOURNALS DON'T SEEM

2477
01:31:20,200 --> 01:31:21,720
TO BE ENCOURAGING THE

2478
01:31:21,720 --> 01:31:23,000
SUBMISSION, THERE IS SOME BIAS

2479
01:31:23,000 --> 01:31:26,000
TO THE PART OF REVIEWERS, SO,

2480
01:31:26,000 --> 01:31:27,440
PERHAPS WHEN ARE NEEDED ARE

2481
01:31:27,440 --> 01:31:30,280
JOURNALS THAT ARE DEDICATED TO

2482
01:31:30,280 --> 01:31:30,880
NULL RESULTS.

2483
01:31:30,880 --> 01:31:33,120
TO OUR KNOWLEDGE THERE HAVE BEEN

2484
01:31:33,120 --> 01:31:36,200
8 SUCH JOURNALS SINCE 2002, AND

2485
01:31:36,200 --> 01:31:39,880
THEY DID NOT FAIR VERY WELL.

2486
01:31:39,880 --> 01:31:40,400
THAT'S THE UNDERSTATEMENT.

2487
01:31:40,400 --> 01:31:43,760
IN TOTAL THEY PUBLISHED JUST 470

2488
01:31:43,760 --> 01:31:47,120
ARTICLES AND JUST TO PUT THICK

2489
01:31:47,120 --> 01:31:50,000
PERSPECTIVE OVER THE SAME TIME

2490
01:31:50,000 --> 01:31:52,480
PERIOD, PNAS PUBLISHED ALONE

2491
01:31:52,480 --> 01:31:53,640
MORE THAN 65,000 PAPERS.

2492
01:31:53,640 --> 01:31:59,960
SO THIS DOES NOT SEEM TO BE AN

2493
01:31:59,960 --> 01:32:02,080
AVENUE FOR 1 THAT INVESTIGATORS

2494
01:32:02,080 --> 01:32:02,360
USE.

2495
01:32:02,360 --> 01:32:04,960
ANOTHER POTENTIAL CONTRIBUTING

2496
01:32:04,960 --> 01:32:08,080
FACTOR TO THE FACT THAT

2497
01:32:08,080 --> 01:32:10,320
SCIENTISTS DO NOT TONED SUBMIT

2498
01:32:10,320 --> 01:32:12,040
THE NULL RESULTS FOR

2499
01:32:12,040 --> 01:32:15,600
PUBLICATIONS ARE THE

2500
01:32:15,600 --> 01:32:16,640
INSTITUTIONAL POLICIES OF

2501
01:32:16,640 --> 01:32:18,800
ENCOURAGING PUBLICATION AND HIGH

2502
01:32:18,800 --> 01:32:24,160
PROFILE JOURNALS AND IN THIS

2503
01:32:24,160 --> 01:32:25,120
REGARD, PAPER BY [INDISCERNIBLE]

2504
01:32:25,120 --> 01:32:26,160
AND COLLEAGUES, THEY DID AN

2505
01:32:26,160 --> 01:32:29,400
INTERESTING STUDY, THEY LOOKEDDA

2506
01:32:29,400 --> 01:32:31,440
THE DOCUMENTS THAT PROMOTE

2507
01:32:31,440 --> 01:32:32,800
REVIEW, PROMOTION AND TENURE AT

2508
01:32:32,800 --> 01:32:34,280
50 UNIVERSITIES IN THE U.S. AND

2509
01:32:34,280 --> 01:32:38,280
CANADA TO SEE IF THEY USE THE

2510
01:32:38,280 --> 01:32:39,480
JOURNAL IMPACT FACTOR IN NEEZ

2511
01:32:39,480 --> 01:32:40,760
DOCUMENTS AND HOW THEY USE THEM

2512
01:32:40,760 --> 01:32:43,640
AND AS YOU ALREADY KNOW, THE

2513
01:32:43,640 --> 01:32:44,680
JOURNAL IMPACT FACTOR IS JUST

2514
01:32:44,680 --> 01:32:47,680
THE AVERAGE NUMBER OF TIMES A

2515
01:32:47,680 --> 01:32:50,800
PAPER IS CITED IN THE JOURNAL.

2516
01:32:50,800 --> 01:32:51,800
AND OBVIOUSLY HAS ABSOLUTELY

2517
01:32:51,800 --> 01:32:55,360
NOTHING TO DO WITH THE QUALITY

2518
01:32:55,360 --> 01:32:59,080
OR IMPACT OF A SPECIFIC 1 PAPER

2519
01:32:59,080 --> 01:33:00,520
IN THAT JOURNAL.

2520
01:33:00,520 --> 01:33:02,680
NEVERTHELESS, THEY FOUND THAT 40

2521
01:33:02,680 --> 01:33:06,640
INSTITUTIONS, 40% OF THE

2522
01:33:06,640 --> 01:33:08,240
INSTITUTIONS MENTIONED THE

2523
01:33:08,240 --> 01:33:09,240
JOURNAL IMPACT FACTOR, THE

2524
01:33:09,240 --> 01:33:12,760
MAJORITY OF THEM IN A SUPPORTIVE

2525
01:33:12,760 --> 01:33:13,520
WAY.

2526
01:33:13,520 --> 01:33:15,280
NOW SINCE HIPROFILE JOURNALS ARE

2527
01:33:15,280 --> 01:33:17,080
UNLIKELY TO ACCEPT NULL RESULTS,

2528
01:33:17,080 --> 01:33:19,400
WE KNOW THAT BECAUSE THAT'S WHAT

2529
01:33:19,400 --> 01:33:22,960
MAKES THEM HIGH PROFILE, IN A

2530
01:33:22,960 --> 01:33:28,160
SENSE WHAT THIS IS SAYING IS

2531
01:33:28,160 --> 01:33:31,200
THAT THE INSTITUTIONS DISCOURAGE

2532
01:33:31,200 --> 01:33:32,200
INVESTIGATORS FROM SUBMITTING

2533
01:33:32,200 --> 01:33:33,880
NULL RESULTS BECAUSE THEY EXPECT

2534
01:33:33,880 --> 01:33:36,240
THEM TO SUBMIT THEM TO HIGH

2535
01:33:36,240 --> 01:33:37,640
PROFILE JOURNALS.

2536
01:33:37,640 --> 01:33:39,120
SO, IN THIS LANDSCAPE THAT I

2537
01:33:39,120 --> 01:33:41,840
JUST DESCRIBED, YOU KNOW, WHAT

2538
01:33:41,840 --> 01:33:47,360
ARE THE INVESTIGATORS TO DO?

2539
01:33:47,360 --> 01:33:48,360
THEY ARE--YOU KNOW, MANY REASONS

2540
01:33:48,360 --> 01:33:50,800
WHY THEY WOULD BE DISCOURAGED

2541
01:33:50,800 --> 01:33:52,760
FROM SUBMITTING NULL RESULTS AND

2542
01:33:52,760 --> 01:33:54,840
IN FACT IN THIS INTERESTING

2543
01:33:54,840 --> 01:33:57,000
STUDY BY FRANCO AND COLLEAGUES

2544
01:33:57,000 --> 01:33:58,880
THEY LOOKED AT 221 SURVEY BASED

2545
01:33:58,880 --> 01:34:00,360
SOCIAL SCIENCE EXPERIMENTS THAT

2546
01:34:00,360 --> 01:34:02,400
WERE FUNDED BY THE NATIONAL

2547
01:34:02,400 --> 01:34:03,480
SCIENCE FOUNDATION TO SEE WHAT

2548
01:34:03,480 --> 01:34:06,040
THE OUTCOMES OF THE STUDIES

2549
01:34:06,040 --> 01:34:06,280
WERE.

2550
01:34:06,280 --> 01:34:08,800
AND THEY FOUND THAT IF THE

2551
01:34:08,800 --> 01:34:12,240
STUDIES HAD STRONG RESULTS, ONLY

2552
01:34:12,240 --> 01:34:15,240
ABOUT 4% OF THE STUDIES WERE NOT

2553
01:34:15,240 --> 01:34:18,160
WRITTEN UP, HOWEVER, IF THEY HAD

2554
01:34:18,160 --> 01:34:21,000
NULL RESULTS, IT WAS--IT WAS

2555
01:34:21,000 --> 01:34:23,520
AROUND 64%, JUST CLEARLY SHOWS

2556
01:34:23,520 --> 01:34:27,600
THAT INVESTIGATORS ARE RELUCTANT

2557
01:34:27,600 --> 01:34:29,160
TO SUBMIT FULL LENGTH PAPERS ON

2558
01:34:29,160 --> 01:34:30,200
NULL RESULTS FOR ALL THOSE

2559
01:34:30,200 --> 01:34:32,760
REASONS THAT WE MENTIONED

2560
01:34:32,760 --> 01:34:33,200
BEFORE.

2561
01:34:33,200 --> 01:34:34,160
BUT THIS RAISES THE POSSIBILITY

2562
01:34:34,160 --> 01:34:38,120
THAT MAYBE WHAT IS NEEDED ARE A

2563
01:34:38,120 --> 01:34:40,200
PLACE WHERE INVESTIGATORS CAN

2564
01:34:40,200 --> 01:34:42,080
SUBMIT SINGLE EXPERIMENTS, YOU

2565
01:34:42,080 --> 01:34:44,160
KNOW MICROPUBLICATIONS THAT WILL

2566
01:34:44,160 --> 01:34:45,640
BE THE NULL RESULTS.

2567
01:34:45,640 --> 01:34:47,480
AND IN THIS REGARD NIH AND THE

2568
01:34:47,480 --> 01:34:49,840
NATIONAL LIBRARY OF MEDICINE DID

2569
01:34:49,840 --> 01:34:53,280
A VERY INTERESTING EXPERIMENT.

2570
01:34:53,280 --> 01:34:55,280
THEY ESTABLISHED AN ONLINE

2571
01:34:55,280 --> 01:34:56,240
JOURNAL CALLED A

2572
01:34:56,240 --> 01:34:58,640
MICROPUBLICATION BIOLOGY, AND IT

2573
01:34:58,640 --> 01:35:01,400
ACCEPTED SINGLE VALIDATED

2574
01:35:01,400 --> 01:35:02,880
RESULTS, COULD BE POSITIVE,

2575
01:35:02,880 --> 01:35:05,000
NEGATIVE OR REPRODUCIBLE

2576
01:35:05,000 --> 01:35:06,440
EXPERIMENTS AND WHAT THEY

2577
01:35:06,440 --> 01:35:08,480
REQUIRED IS THAT THE--UNDERLYING

2578
01:35:08,480 --> 01:35:12,840
DAILY BASIS AT AND THAT'S

2579
01:35:12,840 --> 01:35:13,600
RELATED TO DR. LAUER'S

2580
01:35:13,600 --> 01:35:15,160
PRESENTATION WE JUST HEARD, THE

2581
01:35:15,160 --> 01:35:16,240
UNDERLYING DATA HAS TO BE SHARED

2582
01:35:16,240 --> 01:35:18,000
AS WELL, IT HAS TO BE LINKED TO

2583
01:35:18,000 --> 01:35:19,160
THE PUBLICATION AND THEY DID

2584
01:35:19,160 --> 01:35:21,680
EVERYTHING POSSIBLE TO MAKE THIS

2585
01:35:21,680 --> 01:35:24,240
ATTRACTIVE FOR INVESTIGATORS TO

2586
01:35:24,240 --> 01:35:25,600
SUBMIT PUBLICATIONS, SO THEY

2587
01:35:25,600 --> 01:35:29,040
MADE THE SUBMISSION FREE, IT

2588
01:35:29,040 --> 01:35:30,400
WILL BE PEER REVIEWED WHICH

2589
01:35:30,400 --> 01:35:33,520
ALLOWED THEM TO BE CITED ON PUB

2590
01:35:33,520 --> 01:35:38,400
MED AND THE DATA WAS CURATED AND

2591
01:35:38,400 --> 01:35:39,560
DEPOSITED IN A PLACE PEOPLE CAN

2592
01:35:39,560 --> 01:35:41,240
GET TO SO THERE WAS REALLY, YOU

2593
01:35:41,240 --> 01:35:43,960
KNOW WHAT COULD BE BETTER THAN

2594
01:35:43,960 --> 01:35:44,920
THAT?

2595
01:35:44,920 --> 01:35:46,760
WELL AS OF LAST MONTH THERE ARE

2596
01:35:46,760 --> 01:35:49,560
ONLY 47 OUT OF THE 504 RESEARCH

2597
01:35:49,560 --> 01:35:52,840
PUBLICATIONS ARE SO CALLED

2598
01:35:52,840 --> 01:35:53,800
NEGATIVE RESULTS.

2599
01:35:53,800 --> 01:35:55,960
ALL RIGHT?

2600
01:35:55,960 --> 01:35:58,200
SO THIS PILOT EXPERIMENT

2601
01:35:58,200 --> 01:35:59,800
CONDUCTED BY NIH, WAS COMPLETELY

2602
01:35:59,800 --> 01:36:02,080
IN LINE WITH THE VIEW THAT WE

2603
01:36:02,080 --> 01:36:04,520
HOLD IN THE OFFICE OF RESEARCH

2604
01:36:04,520 --> 01:36:06,320
QUALITY THAT THERE'S A MISSING

2605
01:36:06,320 --> 01:36:07,480
INGREDIENTS, THAT ALL THESE

2606
01:36:07,480 --> 01:36:08,840
THINGS THAT YOU WILL SEE HERE

2607
01:36:08,840 --> 01:36:11,640
ARE NOT ENOUGH TO ENCOURAGE

2608
01:36:11,640 --> 01:36:13,360
INVESTIGATORS TO SUBMIT MORE

2609
01:36:13,360 --> 01:36:14,840
RESULTS AND THEN MISSING

2610
01:36:14,840 --> 01:36:16,880
INGREDIENT, IS CHANGING THE

2611
01:36:16,880 --> 01:36:18,720
CULTURE OF BIOMEDICAL SCIENCES.

2612
01:36:18,720 --> 01:36:18,920
OKAY?

2613
01:36:18,920 --> 01:36:21,440
WE HAVE TO CHANGE THE CULTURE,

2614
01:36:21,440 --> 01:36:26,280
AND WE THEREFORE THINK THAT NIH

2615
01:36:26,280 --> 01:36:28,240
CAN PLAY A SIMPLE ROLE IN

2616
01:36:28,240 --> 01:36:30,280
CHANGING THE CULTURE AND TO THIS

2617
01:36:30,280 --> 01:36:33,840
END, WE WOULD LIKE TO PROPOSE

2618
01:36:33,840 --> 01:36:37,920
AND THIS IS JUST FOR YOUR

2619
01:36:37,920 --> 01:36:39,440
INSIGHT AND THOUGHTS, A 3

2620
01:36:39,440 --> 01:36:39,840
PRONGED APPROACH.

2621
01:36:39,840 --> 01:36:41,200
ONE IS THAT WE HAVE TO INCREASE

2622
01:36:41,200 --> 01:36:42,920
THE VALUE OF NULL RESULTS, THE

2623
01:36:42,920 --> 01:36:45,320
OTHER IS THAT WE HAVE TO REDUCE

2624
01:36:45,320 --> 01:36:47,240
BARRIERS TO PUBLICATION OF NULL

2625
01:36:47,240 --> 01:36:48,480
RESULTS, AND THE THIRD IS THAT

2626
01:36:48,480 --> 01:36:51,000
WE SOMEHOW NEED TO INCENTIVIZE

2627
01:36:51,000 --> 01:37:00,640
BOTH SUBMISSION AND REVIEW OF OF

2628
01:37:00,640 --> 01:37:01,480
THESE NULL RESULTS.

2629
01:37:01,480 --> 01:37:02,840
AND BECAUSE THESE SLIDE VS BEEN

2630
01:37:02,840 --> 01:37:04,760
TRIED BEFORE BECAUSE NONE OF

2631
01:37:04,760 --> 01:37:06,920
THEM HAVE TRIED THEM ALTOGETHER

2632
01:37:06,920 --> 01:37:09,840
AND CERTAINLY NOT WITH THE

2633
01:37:09,840 --> 01:37:14,520
BACKING OF AN ENDORSEMENT FROM

2634
01:37:14,520 --> 01:37:14,680
NIH.

2635
01:37:14,680 --> 01:37:17,560
SO HOW DO I INCREASE THE VALUE

2636
01:37:17,560 --> 01:37:19,880
OF RESULTS, WE WOULD LIKE TO

2637
01:37:19,880 --> 01:37:21,600
SUGGEST THAT NIH ESTABLISH A

2638
01:37:21,600 --> 01:37:24,400
PLATFORM DEDICATED TO THE

2639
01:37:24,400 --> 01:37:26,800
PUBLICATION OF NULL RESULTS,

2640
01:37:26,800 --> 01:37:27,120
OKAY?

2641
01:37:27,120 --> 01:37:29,640
THIS WOULD SEND A STRONG MESSAGE

2642
01:37:29,640 --> 01:37:31,240
FOR COMMUNITY HOW IMPORTANT IS

2643
01:37:31,240 --> 01:37:31,840
THIS TO NIH.

2644
01:37:31,840 --> 01:37:33,640
NOW THIS PLATFORM CAN BE HOUSED

2645
01:37:33,640 --> 01:37:37,480
AT NIH OR BE CONTRACTED OUT,

2646
01:37:37,480 --> 01:37:41,280
OKAY, THAT'S NOT MY PAY GRADE OR

2647
01:37:41,280 --> 01:37:43,400
YOU TON DECIDE IF NIH DECIDES TO

2648
01:37:43,400 --> 01:37:46,880
DO THIS, HOW THEY WANT TO DO IT.

2649
01:37:46,880 --> 01:37:48,280
THAT TO ENHANCE THE LEGITIMACY

2650
01:37:48,280 --> 01:37:52,480
AND THE QUALITY CONTROL OF

2651
01:37:52,480 --> 01:37:53,560
WHAT'S BEING PUBLISHED THERE,

2652
01:37:53,560 --> 01:37:55,320
THE NULL RESULTS WILL HAVE TO BE

2653
01:37:55,320 --> 01:37:57,320
PEER REVIEWED AND THE PEER

2654
01:37:57,320 --> 01:37:59,360
REVIEW WILL BE OF THE

2655
01:37:59,360 --> 01:37:59,920
METHODOLOGY ONLY.

2656
01:37:59,920 --> 01:38:02,160
SO IT'S ONLY ABOUT WHETHER THE

2657
01:38:02,160 --> 01:38:03,360
EXPERIMENT WAS DONE CAREFULLY,

2658
01:38:03,360 --> 01:38:08,560
AND WE ALSO PROPOSE THAT THE

2659
01:38:08,560 --> 01:38:09,880
UNDERLYING DATA WILL BE LINKED

2660
01:38:09,880 --> 01:38:11,200
TO THIS PUBLICATION.

2661
01:38:11,200 --> 01:38:13,680
THIS WILL NOT ONLY INCREASE THE

2662
01:38:13,680 --> 01:38:16,080
VALUE BUT ALSO WILL GO A LONG

2663
01:38:16,080 --> 01:38:19,080
WAY TO SUPPORT THIS NEW NIH

2664
01:38:19,080 --> 01:38:22,280
POLICY ABOUT DATA SHARING, AND

2665
01:38:22,280 --> 01:38:23,040
MANAGEMENT BECAUSE OTHERWISE,

2666
01:38:23,040 --> 01:38:25,280
YOU KNOW THESE RESULTS, IF THEY

2667
01:38:25,280 --> 01:38:27,840
WOULD NOT BE PUBLISHED, TELL BE

2668
01:38:27,840 --> 01:38:29,360
DIFFICULT TO SEE HOW SCIENTISTS

2669
01:38:29,360 --> 01:38:33,120
WOULD ACTUALLY SHARE THIS DATA.

2670
01:38:33,120 --> 01:38:36,720
NEXT WE THINK IF WE WANT THIS

2671
01:38:36,720 --> 01:38:39,320
PLATFORM TO ACTUALLY BE MINED

2672
01:38:39,320 --> 01:38:41,640
FOR ITS CONTENT, TELL BE HAVE TO

2673
01:38:41,640 --> 01:38:48,680
BE USER  FRIENDLY SEARCH

2674
01:38:48,680 --> 01:38:50,120
FUNCTIONS AND EASILY USED TO

2675
01:38:50,120 --> 01:38:51,920
TRACK ANYTHING OF VALUE TO THE

2676
01:38:51,920 --> 01:38:53,720
SCIENTIFIC COMMUNITY AND

2677
01:38:53,720 --> 01:38:57,560
FINALLY, WE THINK THAT IF NIH

2678
01:38:57,560 --> 01:38:59,360
REQUIRES INVESTIGATORS TO REPORT

2679
01:38:59,360 --> 01:39:02,520
IN THEIR ANNUAL REPORTS AND I'M

2680
01:39:02,520 --> 01:39:03,600
PURPOSELY SAYING ANNUAL REPORTS

2681
01:39:03,600 --> 01:39:04,920
AND NOT PROGRESS REPORTS BECAUSE

2682
01:39:04,920 --> 01:39:07,280
I DON'T LIKE THE NAME PROGRESS

2683
01:39:07,280 --> 01:39:13,560
REPORT, BECAUSE THEY IMPLY THAT

2684
01:39:13,560 --> 01:39:15,520
REPORTS IS THAT THERE'S

2685
01:39:15,520 --> 01:39:17,520
PROGRESS, ABOUT I PREFER TO CALL

2686
01:39:17,520 --> 01:39:18,640
THEM ACTIVITY REPORTS, BUT HOW

2687
01:39:18,640 --> 01:39:21,640
MANY AND WHICH STUDIES THEY

2688
01:39:21,640 --> 01:39:23,160
PUBLISHED AS NULL REPORTS THAT

2689
01:39:23,160 --> 01:39:24,360
WOULD SEND A STRONG MESSAGE TO

2690
01:39:24,360 --> 01:39:26,120
THE COMMUNITY AND THEN ALLOW

2691
01:39:26,120 --> 01:39:26,920
PROGRAM STAFF TO DETERMINE YOU

2692
01:39:26,920 --> 01:39:29,120
KNOW HOW TO MOVE FORWARD WITH

2693
01:39:29,120 --> 01:39:32,000
THE NEXT YEAR'S FUNDING.

2694
01:39:32,000 --> 01:39:35,720
AS FAR AS PUBLIC--REDUCING

2695
01:39:35,720 --> 01:39:36,760
BARRIERS, THE FIRST AND FOREMOST

2696
01:39:36,760 --> 01:39:39,080
WE THINK THAT THIS PLATFORM

2697
01:39:39,080 --> 01:39:42,760
SHOULD BE ONLY ABOUT SINGLE

2698
01:39:42,760 --> 01:39:44,040
EXPERIMENTS, NOT ABOUT FULL

2699
01:39:44,040 --> 01:39:46,280
PAPERS AND THE ADVANTAGE OF THAT

2700
01:39:46,280 --> 01:39:48,720
IS THIS WILL ELIMINATE THE NEED

2701
01:39:48,720 --> 01:39:50,280
TO TESTIMONY A STORY, IF YOU

2702
01:39:50,280 --> 01:39:52,360
HAVE TO WRITE THIS WHOLE PAPER,

2703
01:39:52,360 --> 01:39:55,600
IT'LL BE LIMITED TO JUST A FEW

2704
01:39:55,600 --> 01:39:56,840
SENTENCES, WHY THE EXPERIMENT

2705
01:39:56,840 --> 01:39:59,320
WAS DONE, VERY DETAILED METHODS

2706
01:39:59,320 --> 01:40:00,320
OF HOW THE EXPERIMENT WAS DONE

2707
01:40:00,320 --> 01:40:04,600
AND THEN THE ACTUAL RESULT TO

2708
01:40:04,600 --> 01:40:05,680
ASSURE THAT FIRST OF ALL IT WILL

2709
01:40:05,680 --> 01:40:11,520
BE FREE AND THEN TO ASSURE THAT

2710
01:40:11,520 --> 01:40:12,960
IT'LL BE RAPIDLY AND SIMPLY

2711
01:40:12,960 --> 01:40:16,360
ACCEPTED ON TO THE PLATFORM AND

2712
01:40:16,360 --> 01:40:17,040
REVIEWED RAPIDLY.

2713
01:40:17,040 --> 01:40:23,840
WE THINK THERE HAS TO BE

2714
01:40:23,840 --> 01:40:24,440
AUTOMATED ADMISSION PROCESS,

2715
01:40:24,440 --> 01:40:26,720
WHICH YOU WILL SEE IN A MOMENT

2716
01:40:26,720 --> 01:40:28,440
AND ALSO THE SELECTION OF

2717
01:40:28,440 --> 01:40:30,120
REVIEWERS WOULD NEED TO BE

2718
01:40:30,120 --> 01:40:32,280
AUTOMATED, AND WE HAVE SOME

2719
01:40:32,280 --> 01:40:35,320
IDEAS HOW THAT COULD POTENTIALLY

2720
01:40:35,320 --> 01:40:37,480
BE DONE BECAUSE THEY'LL ONLY BE

2721
01:40:37,480 --> 01:40:39,440
REVIEWING THE METHODS, IT'LL BE

2722
01:40:39,440 --> 01:40:42,160
ABOUT EXPERTS IN THE PARTICULAR

2723
01:40:42,160 --> 01:40:44,400
METHOD AND POTENTIALLY WE COULD

2724
01:40:44,400 --> 01:40:46,200
HAVE INVESTIGATORS SELF-IDENTIFY

2725
01:40:46,200 --> 01:40:48,720
AS EXPERTS IN PARTICULAR METHODS

2726
01:40:48,720 --> 01:40:50,400
AND THEY COULD BE ATTEMPTED TO

2727
01:40:50,400 --> 01:40:52,040
THIS DO THIS, WE HOLD THE VIEW

2728
01:40:52,040 --> 01:40:53,640
THAT BECAUSE THEY ONLY LOOKING

2729
01:40:53,640 --> 01:40:55,680
AT 1 EXPERIMENT AND ONLY LOOKING

2730
01:40:55,680 --> 01:40:58,720
AT IF IT WAS DONE CAREFULLY, THE

2731
01:40:58,720 --> 01:41:00,120
BARRIER TO GETTING REVIEWERS TO

2732
01:41:00,120 --> 01:41:02,320
REVIEW THIS WOULD BE RELATIVELY

2733
01:41:02,320 --> 01:41:03,160
LOW.

2734
01:41:03,160 --> 01:41:05,120
AND THERE WILL BE ANOTHER

2735
01:41:05,120 --> 01:41:08,400
INCENTIVE IN THIS COMING SLIDE

2736
01:41:08,400 --> 01:41:10,000
RIGHT HERE.

2737
01:41:10,000 --> 01:41:11,320
SO TO INCENTIVIZE THIS, TELL BE

2738
01:41:11,320 --> 01:41:13,520
IMPORTANT THAT THE PUBLICATIONS

2739
01:41:13,520 --> 01:41:17,960
ARE INDEXED IN MAJOR BIOMEDICAL

2740
01:41:17,960 --> 01:41:19,560
DATABASES.

2741
01:41:19,560 --> 01:41:23,160
WE WOULD SUGGEST THAT THE

2742
01:41:23,160 --> 01:41:24,280
INVESTIGATORS WOULD INCLUDE

2743
01:41:24,280 --> 01:41:27,320
THESE NULL RESULTS IN THEIR

2744
01:41:27,320 --> 01:41:30,200
BIOSKETCH AND DURING GRANT

2745
01:41:30,200 --> 01:41:32,440
REVIEW WILL BE TAKEN INTO

2746
01:41:32,440 --> 01:41:33,640
CONSIDERATION WITH ANY

2747
01:41:33,640 --> 01:41:35,320
PRODUCTIVITY WITH AN

2748
01:41:35,320 --> 01:41:36,040
INVESTIGATOR.

2749
01:41:36,040 --> 01:41:39,320
TO INCENTIVIZE REVIEWERS TO

2750
01:41:39,320 --> 01:41:41,280
ACTUALLY REVIEW, 1 COULD

2751
01:41:41,280 --> 01:41:43,480
POTENTIALLY MAKE IT POSSIBLE FOR

2752
01:41:43,480 --> 01:41:45,280
THE REVIEWS TO GET A DOI AND

2753
01:41:45,280 --> 01:41:52,720
ACTUALLY ALSO TO BE INDEXED IN

2754
01:41:52,720 --> 01:41:55,440
AS A CITEABLE OBLIGATIONS YECT

2755
01:41:55,440 --> 01:41:57,520
AND WE COULD ENCOURAGE REVIEWERS

2756
01:41:57,520 --> 01:41:58,800
IN THEIR BIOSKETCH HOW MANY OF

2757
01:41:58,800 --> 01:42:00,240
THESE NULL RESULTS THAT I

2758
01:42:00,240 --> 01:42:02,240
REVIEWED AND THAT WILL SERVE AS

2759
01:42:02,240 --> 01:42:05,480
BROWNIE POINTS AS WELL.

2760
01:42:05,480 --> 01:42:06,960
SO TO PUT EVERYTHING IN CONTEXT,

2761
01:42:06,960 --> 01:42:09,720
WHAT I JUST TOLD YOU, I SUGGEST

2762
01:42:09,720 --> 01:42:13,160
THAT WE LOOK AT THIS NIH

2763
01:42:13,160 --> 01:42:18,880
ECOSYSTEM FROM THE PERSPECTIVE

2764
01:42:18,880 --> 01:42:21,920
OF INVESTIGATORS IN THE GAME FOR

2765
01:42:21,920 --> 01:42:23,760
APPLY FOR NIH GRANTS.

2766
01:42:23,760 --> 01:42:27,200
SO WE CAN IMAGINE AN

2767
01:42:27,200 --> 01:42:28,880
INVESTIGATOR PERFORMANCE AND

2768
01:42:28,880 --> 01:42:30,480
EXPERIMENT, THE EXPERIMENT HE OR

2769
01:42:30,480 --> 01:42:31,960
SHE DOES THEIR EXPERIMENT

2770
01:42:31,960 --> 01:42:34,120
CAREFULLY AND THE RESULTS TURN

2771
01:42:34,120 --> 01:42:36,400
OUT TO BE NULL.

2772
01:42:36,400 --> 01:42:38,280
WHAT THEY CAN DO THEN IS TO

2773
01:42:38,280 --> 01:42:42,760
SUBMIT THIS TO THIS NEW PLATFORM

2774
01:42:42,760 --> 01:42:44,600
THAT YOU'RE PROPOSING, IT'S

2775
01:42:44,600 --> 01:42:49,760
FREE, AND IN PARALLEL, THEY WILL

2776
01:42:49,760 --> 01:42:52,200
DEPOSIT THE DATA ONCE IT'S WELL

2777
01:42:52,200 --> 01:42:54,560
ANNOTATE INDEED A REPOSITORY.

2778
01:42:54,560 --> 01:42:56,000
THIS WILL THEN UNDERGO VERY

2779
01:42:56,000 --> 01:42:57,800
RAPID AND SIMPLE AUTOMATED

2780
01:42:57,800 --> 01:43:00,680
QUALITY CONTROL SIMILAR TO WHAT

2781
01:43:00,680 --> 01:43:01,600
HAPPENS IN BIOARCHIVE, WHERE

2782
01:43:01,600 --> 01:43:03,840
BASICALLY IT JUST LOOKS AT

2783
01:43:03,840 --> 01:43:04,800
TECHNICAL ASPECTS OF THE

2784
01:43:04,800 --> 01:43:09,320
SUBMISSION TO SEE THAT IT MEETS

2785
01:43:09,320 --> 01:43:09,920
BASIC STANDARDS.

2786
01:43:09,920 --> 01:43:11,240
THEN REVIEWERS WILL BE SELECTED

2787
01:43:11,240 --> 01:43:13,600
AUTOMATICALLY FROM A DATABASE,

2788
01:43:13,600 --> 01:43:15,920
AND WE CAN DISCUSS AFTERWARDS IF

2789
01:43:15,920 --> 01:43:17,440
YOU'RE INTERESTED, POTENTIALLY

2790
01:43:17,440 --> 01:43:20,640
WHO THESE REVIEWERS MIGHT BE.

2791
01:43:20,640 --> 01:43:22,600
IT GOES UNDER, YOU KNOW RAPID

2792
01:43:22,600 --> 01:43:23,680
REVIEW, BECAUSE THE REVIEW IS

2793
01:43:23,680 --> 01:43:27,520
ONLY ABOUT THE RIGOR AND

2794
01:43:27,520 --> 01:43:28,880
METHODS, AND ANALYSIS.

2795
01:43:28,880 --> 01:43:31,000
THE TRANSPARENCY OF REPORTING

2796
01:43:31,000 --> 01:43:32,600
AND COHERENCE OF THE DOCUMENTS

2797
01:43:32,600 --> 01:43:35,360
AND ONCE ACCEPTED, IT RECEIVES A

2798
01:43:35,360 --> 01:43:38,080
DOI, AND MAKES IT SEARCHABLE FOR

2799
01:43:38,080 --> 01:43:42,160
THE SCIENTIFIC COMMUNITY TO MINE

2800
01:43:42,160 --> 01:43:42,840
THIS DATA.

2801
01:43:42,840 --> 01:43:44,440
WHAT ARE THE INCENTIVES THAT

2802
01:43:44,440 --> 01:43:53,680
THEY WILL GET FROM THIS? 

2803
01:43:53,680 --> 01:43:55,720
IT'LL BE INDEXED IN PUB MED AS A

2804
01:43:55,720 --> 01:43:57,240
PUBLICATION AND ALSO IF IT'S

2805
01:43:57,240 --> 01:44:00,560
LISTED IN THE PROGRESS REPORTS,

2806
01:44:00,560 --> 01:44:02,800
THIS WORKS IN THEIR FAVOR IN

2807
01:44:02,800 --> 01:44:04,040
CONSIDERATION AND CONTINUATION

2808
01:44:04,040 --> 01:44:09,440
OF FUNDING, IN PARALLEL, IF THE

2809
01:44:09,440 --> 01:44:11,040
INVESTIGATOR PLANS TO SUBMIT A

2810
01:44:11,040 --> 01:44:16,120
GRANT FOR HIS OR HER NEXT CYCLE,

2811
01:44:16,120 --> 01:44:17,880
THEY CAN LIST THESE IN THEIR

2812
01:44:17,880 --> 01:44:22,160
BIOSKETCH AND THEY CAN ALSO LIST

2813
01:44:22,160 --> 01:44:23,880
WHEN THEY REVIEWED OTHER SUCH

2814
01:44:23,880 --> 01:44:27,920
STUDIES, AND THIS WILL BE TAKEN

2815
01:44:27,920 --> 01:44:30,400
INTO CONSIDERATION WHEN

2816
01:44:30,400 --> 01:44:34,880
REVIEWING THE INVESTIGATOR IN

2817
01:44:34,880 --> 01:44:35,560
THE GRANT APPLICATION.

2818
01:44:35,560 --> 01:44:36,800
AND HOPEFULLY THEY RECEIVE THEIR

2819
01:44:36,800 --> 01:44:39,600
NEXT FUNDING AND THE CYCLE CAN

2820
01:44:39,600 --> 01:44:40,280
REPEAT ITSELF.

2821
01:44:40,280 --> 01:44:43,480
SO THAT'S REALLY ALL I HAVE TO

2822
01:44:43,480 --> 01:44:45,280
SAY ABOUT THIS ECOSYSTEM AND I

2823
01:44:45,280 --> 01:44:47,640
WILL JUST SAY 1 MORE THING AND

2824
01:44:47,640 --> 01:44:50,200
THAT IS THIS IS--I'M SHOWING

2825
01:44:50,200 --> 01:44:52,480
HERE, FROM THE PERSPECTIVE OF

2826
01:44:52,480 --> 01:44:53,440
THE INVESTIGATOR, BUT WE CAN

2827
01:44:53,440 --> 01:44:56,360
IMAGINE THAT THERE CAN BE A LOT

2828
01:44:56,360 --> 01:45:01,040
OF COLLATERAL BENEFIT AS WELL,

2829
01:45:01,040 --> 01:45:02,320
BECAUSE, ONCE THERE'S A CHANGE

2830
01:45:02,320 --> 01:45:04,880
IN THE CULTURE THAT NULL RESULTS

2831
01:45:04,880 --> 01:45:06,880
ARE VALUED AND APPRECIATED THAT

2832
01:45:06,880 --> 01:45:09,360
COULD GO A LONG WAY TO DOING

2833
01:45:09,360 --> 01:45:11,760
AWAY WITH THIS CULTURE OF

2834
01:45:11,760 --> 01:45:14,560
PUBLISH OR PERISH AND HAVING TO

2835
01:45:14,560 --> 01:45:17,120
HAVE POSITIVE RESULTS AND HIGH

2836
01:45:17,120 --> 01:45:19,640
PROFILE JOURNALS, SO WITH THAT I

2837
01:45:19,640 --> 01:45:21,560
WILL STOP HERE AND THANK YOU FOR

2838
01:45:21,560 --> 01:45:22,560
YOUR ATTENTION AND WILL BE GLAD

2839
01:45:22,560 --> 01:45:27,680
TO TAKE ANY QUESTIONS YOU MIGHT

2840
01:45:27,680 --> 01:45:28,160
HAVE.

2841
01:45:28,160 --> 01:45:29,720
>> THANKS A LOT, SHAI, WHY
DON'T

2842
01:45:29,720 --> 01:45:32,720
WE TAKE THE SLIDES DOWN.

2843
01:45:32,720 --> 01:45:35,440
TOM, I SUGGEST EVERYONE READ

2844
01:45:35,440 --> 01:45:36,800
GINA'S COMMENTS IN THE CHAT, SHE

2845
01:45:36,800 --> 01:45:39,440
WILL BE BACK IN A MINUTE.

2846
01:45:39,440 --> 01:45:39,960
TOM?

2847
01:45:39,960 --> 01:45:42,760
>> THIS IS GREAT SHAI,
THIS IS

2848
01:45:42,760 --> 01:45:43,920
SUCH AN IMPORTANT NEW AVENUE,

2849
01:45:43,920 --> 01:45:46,120
MOST OF US PROBABLY HAVE HAD

2850
01:45:46,120 --> 01:45:47,800
NEGATIVE DATA AND HAVE STRUGGLED

2851
01:45:47,800 --> 01:45:49,600
TO FIND PLACES TO PUT IT.

2852
01:45:49,600 --> 01:45:52,880
JUST A COUPLE OF QUICK

2853
01:45:52,880 --> 01:45:53,440
SUGGESTIONS, THE REVIEWERS

2854
01:45:53,440 --> 01:45:55,480
PARTICULARLY WHEN YOU THINK OF

2855
01:45:55,480 --> 01:45:56,480
THE ENTIRE BIOMEDICAL RESEARCH

2856
01:45:56,480 --> 01:45:57,680
COMMUNITY WILL PROBABLY GET MOST

2857
01:45:57,680 --> 01:46:00,680
QUICKLY HUNG UP ON TYPE 2 ERROR.

2858
01:46:00,680 --> 01:46:03,920
AND HOW THEY FEEL CONFIDENT

2859
01:46:03,920 --> 01:46:04,760
HANDLING RAPIDLY HANDLING THAT

2860
01:46:04,760 --> 01:46:06,000
AND SO YOU MIGHT THINK ABOUT A

2861
01:46:06,000 --> 01:46:08,680
WAY IN WHICH THAT COULD ALMOST

2862
01:46:08,680 --> 01:46:11,720
BE IN A SEMIAUTOMATED WAY DEALT

2863
01:46:11,720 --> 01:46:12,840
WITH THE STATISTICAL POWER IS

2864
01:46:12,840 --> 01:46:13,840
THERE OR NOT.

2865
01:46:13,840 --> 01:46:15,760
YOU KNOW, SO THAT THE REVIEWER

2866
01:46:15,760 --> 01:46:18,080
DOESN'T HAVE TO WADE IN AND

2867
01:46:18,080 --> 01:46:18,800
THRASH THAT AROUND.

2868
01:46:18,800 --> 01:46:21,080
A SECOND IS THAT THERE'S AN

2869
01:46:21,080 --> 01:46:21,920
INTERESTING PAPER ON BIOARCHIVES

2870
01:46:21,920 --> 01:46:25,880
THAT JUST CAME OUT THAT LOOKED

2871
01:46:25,880 --> 01:46:27,760
AT REVIEWERS AND LENGTH OF

2872
01:46:27,760 --> 01:46:30,080
REVIEW BY IMPACT FACTOR OF

2873
01:46:30,080 --> 01:46:33,160
JOURNAL AND I SUSPECT THAT YOUR

2874
01:46:33,160 --> 01:46:35,520
INCENTIVIZATION PROGRAM MAY NOT

2875
01:46:35,520 --> 01:46:39,000
BE WORK FOR ALL OF US WHO REVIEW

2876
01:46:39,000 --> 01:46:41,520
FOR HIGH IMPACT JOURNALS, SO THE

2877
01:46:41,520 --> 01:46:43,120
GREATER THE IMPACT, THE LONGER

2878
01:46:43,120 --> 01:46:45,440
THE REVIEW AND THE HIGH IMPACT

2879
01:46:45,440 --> 01:46:46,800
JOURNALS PRETTY MUCH EXPECT AS

2880
01:46:46,800 --> 01:46:48,440
DETAMED AND LONGER REVIEW,

2881
01:46:48,440 --> 01:46:49,640
WHEREAS AS THESE AND WE MIGHT

2882
01:46:49,640 --> 01:46:52,040
WANT TO BE RECOGNIZED FOR THAT

2883
01:46:52,040 --> 01:46:52,640
MORE THAN THIS.

2884
01:46:52,640 --> 01:46:54,680
AND SO THERE MIGHT BE OTHER WAYS

2885
01:46:54,680 --> 01:46:57,360
TO THINK ABOUT INCENTIVIZATION,

2886
01:46:57,360 --> 01:46:58,240
MAYBE ROLLING SUBMISSIONS, MAYBE

2887
01:46:58,240 --> 01:47:01,320
PEOPLE WHO HAVE 5 OF THESE GET

2888
01:47:01,320 --> 01:47:02,640
TO SUBMIT JUST LIKE SOMEBODY'S

2889
01:47:02,640 --> 01:47:04,360
ON STUDY SECTION, YOU KNOW?

2890
01:47:04,360 --> 01:47:10,640
MAYBE THERE ARE OTHER WAYS TO

2891
01:47:10,640 --> 01:47:11,400
INCENTIVIZE.

2892
01:47:11,400 --> 01:47:12,200
>> GREAT, POINT, TIM.

2893
01:47:12,200 --> 01:47:14,280
SHAI, IF YOU WANT TO ANSWER THIS

2894
01:47:14,280 --> 01:47:15,160
OF THESE, OTHERWISE, I WOULD

2895
01:47:15,160 --> 01:47:17,160
LIKE TO GET AS MUCH FEEDBACK AS

2896
01:47:17,160 --> 01:47:17,760
POSSIBLE.

2897
01:47:17,760 --> 01:47:19,320
>> THANK YOU SHAI, AND I
WANT TO

2898
01:47:19,320 --> 01:47:21,360
THANK YOU FOR SINGLE HANDEDLY

2899
01:47:21,360 --> 01:47:22,360
PUTTING THE WORD RIGOR IN

2900
01:47:22,360 --> 01:47:23,840
CONVERSATION IN THE LAST 10

2901
01:47:23,840 --> 01:47:27,200
YEARS AT THE NIH, I THINK WE OWE

2902
01:47:27,200 --> 01:47:28,440
GREAT DEBT OF GRATITUDE TO YOU

2903
01:47:28,440 --> 01:47:30,680
BUT I WANT TO CHALLENGE A COUPLE

2904
01:47:30,680 --> 01:47:33,760
THINGS, I THINK ON PURPOSE WHAT

2905
01:47:33,760 --> 01:47:36,360
IS LOST IN THIS IS THE

2906
01:47:36,360 --> 01:47:37,920
INTELLECTUAL SIGNIFICANCE OF ANY

2907
01:47:37,920 --> 01:47:38,160
FINDING.

2908
01:47:38,160 --> 01:47:38,960
WHAT YOU'RE ADVOCATE SUGGEST

2909
01:47:38,960 --> 01:47:42,080
THAT HAS TO BE STRIPPED AWAY IN

2910
01:47:42,080 --> 01:47:43,440
EVALUATION OF THE PIECE OF DATA

2911
01:47:43,440 --> 01:47:45,600
AND I UNDERSTAND TOTALLY THE

2912
01:47:45,600 --> 01:47:46,240
MOTIVATION AND POETIC TEBTIAL

2913
01:47:46,240 --> 01:47:47,560
IMPACT IT HAS BUT AT THE SAME

2914
01:47:47,560 --> 01:47:51,320
TIME, YOU KNOW IF YOU STRIP AWAY

2915
01:47:51,320 --> 01:47:52,120
ALL INTELLECTUAL SIGNIFICANCE

2916
01:47:52,120 --> 01:47:53,560
YOU COULD SAY LISTEN, I TESTED

2917
01:47:53,560 --> 01:47:56,240
THE EFFECT OF THE MICRODOSE,

2918
01:47:56,240 --> 01:47:57,720
HOMEIO PATHIC DOSE OF SYNAPSE

2919
01:47:57,720 --> 01:47:59,120
FUNCTION AND I HAVE NOTHING, I

2920
01:47:59,120 --> 01:48:00,840
WILL PUBLISH THAT, NOW IS THAT

2921
01:48:00,840 --> 01:48:02,480
WORTH FILLING UP THESE

2922
01:48:02,480 --> 01:48:04,280
REPOSITORIES WITH THAT KIND--I

2923
01:48:04,280 --> 01:48:05,080
PICK TODAY RANDOMLY, YOU KNOW

2924
01:48:05,080 --> 01:48:09,200
OUT OF A HAT BUT I DO WORRY THAT

2925
01:48:09,200 --> 01:48:10,000
BECAUSE THAT'S STRIPPED OF

2926
01:48:10,000 --> 01:48:11,800
SIGNATURES HIV CANC, CAN YOU GO

2927
01:48:11,800 --> 01:48:12,480
DOWN THAT PATH.

2928
01:48:12,480 --> 01:48:14,480
I ALSO WONDER IF 1 HAS

2929
01:48:14,480 --> 01:48:15,400
UNDERCOUNTED NEGATIVE RESULTS IN

2930
01:48:15,400 --> 01:48:17,560
THE FOLLOWING WAY WHICH IS, YOU

2931
01:48:17,560 --> 01:48:19,720
KNOW A TYPICAL GWAS STUDY,

2932
01:48:19,720 --> 01:48:24,520
RIGHT? 

2933
01:48:24,520 --> 01:48:26,040
SHOWS TONS OF NEGATIVE RESULTS,

2934
01:48:26,040 --> 01:48:28,080
IT SHOWS 3 THAT DID AND 19,000

2935
01:48:28,080 --> 01:48:30,080
TO DIDN'T SO THERE WAS A BUNCH

2936
01:48:30,080 --> 01:48:32,320
OF NEGATIVE DATA, RIGHT?

2937
01:48:32,320 --> 01:48:34,160
IN MANY DRUG STUDIES YOU MIGHT

2938
01:48:34,160 --> 01:48:37,640
COMPARE AN ACTIVE DRUG TO AN

2939
01:48:37,640 --> 01:48:38,440
ACTIVE--NEGATIVE RESULT THERE SO

2940
01:48:38,440 --> 01:48:40,880
GOOD IS IT SAIDS DO NEED TO HAVE

2941
01:48:40,880 --> 01:48:41,760
NEGATIVE THINGS ON THEM

2942
01:48:41,760 --> 01:48:43,960
OBVIOUSLY BUT I WOULD SAY IF

2943
01:48:43,960 --> 01:48:44,800
THEREYA A COMPELLING ENOUGH

2944
01:48:44,800 --> 01:48:46,840
REASON TO DO ANY STUDY, THE

2945
01:48:46,840 --> 01:48:48,200
NEGATIVE RESULT SHOULD BE

2946
01:48:48,200 --> 01:48:48,720
SIGNIFICANT.

2947
01:48:48,720 --> 01:48:49,680
I WORRY ABOUT THE FACT THAT

2948
01:48:49,680 --> 01:48:51,840
WE'LL OPEN THE DOOR TO JUST

2949
01:48:51,840 --> 01:48:54,520
ANYTHING GOES, YOU DID ANY

2950
01:48:54,520 --> 01:48:55,400
EXPERIMENT, DOESN'T MATTER IF IT

2951
01:48:55,400 --> 01:48:57,960
WAS A NULL RESULT, YOU KNOW, ALL

2952
01:48:57,960 --> 01:48:59,960
COMERS ARE GOOD, NOW I'M JUST

2953
01:48:59,960 --> 01:49:02,680
CURIOUS WHAT YOUR PERSPECTIVE IS

2954
01:49:02,680 --> 01:49:03,320
ON THAT?

2955
01:49:03,320 --> 01:49:04,800
>> WELL, YOU KNOW THAT'S A
GREAT

2956
01:49:04,800 --> 01:49:06,800
QUESTION, ACTUALLY I HAD A

2957
01:49:06,800 --> 01:49:09,320
CONVERSATION WITH BOB ABOUT THIS

2958
01:49:09,320 --> 01:49:10,920
JUST--

2959
01:49:10,920 --> 01:49:13,600
>> THIS IS EXACTLY--I'M A
HUGE

2960
01:49:13,600 --> 01:49:16,400
FAN OF IT AND I ASKED HIM THIS

2961
01:49:16,400 --> 01:49:17,480
QUESTION YESTERDAY AND WE

2962
01:49:17,480 --> 01:49:19,160
DISCUSSED IT FOR AN HOUR

2963
01:49:19,160 --> 01:49:20,440
YESTERDAY.

2964
01:49:20,440 --> 01:49:21,600
BUT ANYWAY, SORRY.

2965
01:49:21,600 --> 01:49:22,800
>> SO YOU'RE OBVIOUSLY
RIGHT

2966
01:49:22,800 --> 01:49:24,080
THERE.  CAN BE REALLY DUMB

2967
01:49:24,080 --> 01:49:25,880
EXPERIMENTS THAT PEOPLE DO BUT I

2968
01:49:25,880 --> 01:49:36,400
THINK, YOU KNOW EXPERIMENTS THAT

2969
01:49:38,240 --> 01:49:40,600
ARE REALLY DUMB WILL DIE OUT.

2970
01:49:40,600 --> 01:49:43,400
BUT YOU KNOW THERE ARE PLENTY OF

2971
01:49:43,400 --> 01:49:46,440
FULL BLOWN PAPERS OUT THERE THAT

2972
01:49:46,440 --> 01:49:47,640
YOU WOULDN'T BOTHER TO READ AND

2973
01:49:47,640 --> 01:49:56,200
IF YOU HAVE A GOOD WAY TO SEARCH

2974
01:49:56,200 --> 01:49:58,040
THROUGH THIS PLATFORM, THEN YOU

2975
01:49:58,040 --> 01:49:58,960
WILL FIND THINGS THAT INTEREST

2976
01:49:58,960 --> 01:50:03,360
YOU AND THE ALTERNATIVE IS, NOT

2977
01:50:03,360 --> 01:50:05,080
HAVING THE NULL RESULTS, RIGHT?

2978
01:50:05,080 --> 01:50:07,080
BECAUSE ONCE YOU START TO SAY,

2979
01:50:07,080 --> 01:50:09,200
WELL, IS THIS IMPORTANT OR NOT

2980
01:50:09,200 --> 01:50:09,560
IMPORTANT?

2981
01:50:09,560 --> 01:50:13,600
WHO'S TO JUDGE THAT, RIGHT?

2982
01:50:13,600 --> 01:50:14,480
AND UNFORTUNATELY, PEOPLE THE

2983
01:50:14,480 --> 01:50:16,720
WAY THEY JUDGE THINGS, MANY

2984
01:50:16,720 --> 01:50:18,280
TIMES IF THE RESULTS ARE

2985
01:50:18,280 --> 01:50:19,560
POSITIVE, THEY SAY OH THIS HAS

2986
01:50:19,560 --> 01:50:20,720
GOT TO BE IMPORTANT AND OF

2987
01:50:20,720 --> 01:50:23,920
COURSE THAT CAN BE

2988
01:50:23,920 --> 01:50:25,640
FALSE-POSITIVES ANYWAY, SO, YES,

2989
01:50:25,640 --> 01:50:30,080
WE UNDERSTAND, YOU KNOW THAT'S A

2990
01:50:30,080 --> 01:50:32,320
POTENTIAL ISSUE, BUT BUT I THINK

2991
01:50:32,320 --> 01:50:34,440
THE GAINS ARE MUCH GREATER THAN

2992
01:50:34,440 --> 01:50:38,160
THE LOSSES. 

2993
01:50:38,160 --> 01:50:40,200
>> OKAY, THANKS.

2994
01:50:40,200 --> 01:50:41,120
DAVID?

2995
01:50:41,120 --> 01:50:42,760
>> HI, SHAI, THIS IS AN

2996
01:50:42,760 --> 01:50:43,680
ABSOLUTELY FASCINATING TOPIC OF

2997
01:50:43,680 --> 01:50:44,120
CONVERSATION.

2998
01:50:44,120 --> 01:50:46,040
WE'VE BEEN THROUGH SOME OF THIS

2999
01:50:46,040 --> 01:50:47,240
IN OUR OWN GROUP.

3000
01:50:47,240 --> 01:50:48,600
IN FACT, 1 OF THE THINGS IT

3001
01:50:48,600 --> 01:50:52,560
TURNED OUT YOU COULD THROW SOME

3002
01:50:52,560 --> 01:50:53,840
MONEY AT THE PROBLEM AND IT

3003
01:50:53,840 --> 01:50:54,400
HELPED A LOT.

3004
01:50:54,400 --> 01:50:56,880
SO 1 OF THE BIG BARRIERS TO

3005
01:50:56,880 --> 01:50:57,760
PUBLISHING JUST NEGATIVE RESULTS

3006
01:50:57,760 --> 01:50:59,680
WAS THE TIME AND EFFORT IT TOOK

3007
01:50:59,680 --> 01:51:00,840
TO ANALYZE THEM AND WRITE THEM

3008
01:51:00,840 --> 01:51:02,680
UP, IF YOU ONLY HAVE A CERTAIN

3009
01:51:02,680 --> 01:51:03,960
NUMBER OF HOURS IN THE DAY, YOU

3010
01:51:03,960 --> 01:51:05,040
WILL CHOOSE TO PRIORITIZE THE

3011
01:51:05,040 --> 01:51:06,120
THINGS YOU THINK ARE MOAFORT

3012
01:51:06,120 --> 01:51:07,720
IMPORTANT AND THEY COULD BE THE

3013
01:51:07,720 --> 01:51:08,920
MOST IMPORTANT NEG5 RESULTS AND

3014
01:51:08,920 --> 01:51:10,920
THEY COULD BE THE MOST IMPORTANT

3015
01:51:10,920 --> 01:51:12,280
POSITIVE RESULTS BUT YOU

3016
01:51:12,280 --> 01:51:13,400
PRIORITIZE YOUR MOST IMPORTANT

3017
01:51:13,400 --> 01:51:15,200
RESULTS SO HIRING A PROFESSIONAL

3018
01:51:15,200 --> 01:51:17,720
SCIENTIFIC WRITER TO GO THROUGH

3019
01:51:17,720 --> 01:51:19,320
AND REALLY HELP WITH THE WRITING

3020
01:51:19,320 --> 01:51:21,080
UP ALL OF THEM OR ALL OF THE 1S

3021
01:51:21,080 --> 01:51:23,520
THAT WERE VALID OR ALL THE 1S

3022
01:51:23,520 --> 01:51:24,320
THAT WERE INTERESTING, STILL

3023
01:51:24,320 --> 01:51:25,640
DIDN'T WRITE UP ALL OF THEM BUT

3024
01:51:25,640 --> 01:51:27,600
WE WROTE UP MAYBE THE

3025
01:51:27,600 --> 01:51:29,200
INTERESTING HALF WHEREAS BEFORE

3026
01:51:29,200 --> 01:51:30,880
WE WERE REALLY ONLY FOCUSING ON

3027
01:51:30,880 --> 01:51:32,840
THE MOST IMPORTANT QUARTER.

3028
01:51:32,840 --> 01:51:33,560
HIRING A SCIENTIFIC WRITERS

3029
01:51:33,560 --> 01:51:35,280
COULD REALLY HELP SO THAT'S REAL

3030
01:51:35,280 --> 01:51:35,480
MONEY.

3031
01:51:35,480 --> 01:51:37,120
I MEAN THE QUESTION THAT AROSE

3032
01:51:37,120 --> 01:51:38,120
EARLIER IN THE DIFFERENT TOPIC

3033
01:51:38,120 --> 01:51:39,720
ABOUT WHAT WOULD BE THE

3034
01:51:39,720 --> 01:51:40,880
BUDGETARY EFFECTS OF THIS

3035
01:51:40,880 --> 01:51:42,560
PROPOSAL, I THINK IT WOULD BE

3036
01:51:42,560 --> 01:51:44,480
REAL BECAUSE IT WOULD HAVE REAL

3037
01:51:44,480 --> 01:51:47,160
ARK DITIONAL STAFF TIME REQUIRED

3038
01:51:47,160 --> 01:51:48,520
TO DO THIS, IS IT WORTH IT,

3039
01:51:48,520 --> 01:51:50,640
YEAH, IT WOULD BE WORTH IT.

3040
01:51:50,640 --> 01:51:53,040
THE OTHER THING TAKING OFF AS A

3041
01:51:53,040 --> 01:51:56,040
SCIENTIST AD HOCS AND PUTTING ON

3042
01:51:56,040 --> 01:52:00,080
EDITOR IN CHIEF HAT, SO I'M THE

3043
01:52:00,080 --> 01:52:01,400
EDITOR IN CHIEF OF NEUROAND

3044
01:52:01,400 --> 01:52:03,040
TRAUMA, WE FIND IT HARD TO GET

3045
01:52:03,040 --> 01:52:05,760
REVIEWERS TO AAGREE TO REVIEW

3046
01:52:05,760 --> 01:52:06,880
NEGATIVE OR NONSIGNIFICANT

3047
01:52:06,880 --> 01:52:08,120
STUDIES MUCH HARDER THAN TO DO

3048
01:52:08,120 --> 01:52:11,760
THE 1S THAT HAVE A SPECTACULAR

3049
01:52:11,760 --> 01:52:12,960
TOP LINE FINDING SO WE HAVE TO

3050
01:52:12,960 --> 01:52:14,960
HAVE A BITTER WAY TO INCENTIVIZE

3051
01:52:14,960 --> 01:52:16,840
VIEWERS, SO I THINK THE MENINGS

3052
01:52:16,840 --> 01:52:18,120
YOU MENTIONED ARE OKAY BUT NOT

3053
01:52:18,120 --> 01:52:18,640
GREAT.

3054
01:52:18,640 --> 01:52:20,920
SO I THINK WE NEED REALLY

3055
01:52:20,920 --> 01:52:22,160
SIGNIFICANT INCENTIVES SO LIKE

3056
01:52:22,160 --> 01:52:23,600
FOR EXAMPLE, GIVING IN OUR

3057
01:52:23,600 --> 01:52:24,680
JOURNAL WE'RE CONSIDERING THINGS

3058
01:52:24,680 --> 01:52:27,720
LOAMACYIC GIVING PEOPLE WHO HAVE

3059
01:52:27,720 --> 01:52:30,600
DONE CONSISTENT HIGH QUALITY

3060
01:52:30,600 --> 01:52:32,400
ON-TIME REVIEWS FREE OPEN ACCESS

3061
01:52:32,400 --> 01:52:36,720
TO A PAPER FOR 1 OF THEIR OWN

3062
01:52:36,720 --> 01:52:37,600
PUBLICATIONS OR REDUCED

3063
01:52:37,600 --> 01:52:40,080
SUBMISSION CHARGES OR FREE

3064
01:52:40,080 --> 01:52:41,440
SUBMISSION CHARGES OR FREE COLOR

3065
01:52:41,440 --> 01:52:43,600
FIGURES SO AGAIN PUTTING REAL

3066
01:52:43,600 --> 01:52:45,480
MONEY INTO THE--NOT BROWNIE

3067
01:52:45,480 --> 01:52:46,880
POINTS BUT LIKE DOLLAR POINTS

3068
01:52:46,880 --> 01:52:49,240
INTO THE REWARDS SYSTEM.

3069
01:52:49,240 --> 01:52:50,000
SO AND THEN THE THIRD THING IS

3070
01:52:50,000 --> 01:52:53,440
THAT WE ALSO HAVE A SPINOFF

3071
01:52:53,440 --> 01:52:54,240
JOURNAL CALLED NEUROTRAUMA

3072
01:52:54,240 --> 01:52:56,400
REPORTS WHICH IS NOT IN NAME A

3073
01:52:56,400 --> 01:52:59,280
NEGATIVE OR NULL RESULTS

3074
01:52:59,280 --> 01:53:00,920
JOURNAL, BUT IT DOES MAINLY

3075
01:53:00,920 --> 01:53:02,280
PUBLISH A LOT OF NULL REPORTS

3076
01:53:02,280 --> 01:53:04,320
AND SO WE ACTUALLY DO PUBLISH

3077
01:53:04,320 --> 01:53:07,400
QUITE A NUMBER OF NULL RESULTS.

3078
01:53:07,400 --> 01:53:11,080
THEY STILL HAVE TO BE OF GOOD

3079
01:53:11,080 --> 01:53:12,440
QUALITY, JUST EXACTLY AS YOU

3080
01:53:12,440 --> 01:53:19,680
SAID BUT THEY MAY BE

3081
01:53:19,680 --> 01:53:22,120
UNDERCOUNTED IN THE ANALYSIS.

3082
01:53:22,120 --> 01:53:23,680
OVER.

3083
01:53:23,680 --> 01:53:23,960
>> JOHN?

3084
01:53:23,960 --> 01:53:25,920
>> THANKS SHAI, IT'S SUCH
AN

3085
01:53:25,920 --> 01:53:26,760
IMPORTANT EFFORT, I AGREE WITH

3086
01:53:26,760 --> 01:53:29,000
DAVID THE BIGGEST IS TO

3087
01:53:29,000 --> 01:53:30,120
INCENTIVIZE INVESTIGATORS TO

3088
01:53:30,120 --> 01:53:30,720
PUBLISH THE RESULTS.

3089
01:53:30,720 --> 01:53:32,600
I DON'T THINK THE BARRIERS AND

3090
01:53:32,600 --> 01:53:34,280
VALUE ARE REALLY ANY QUESTION, I

3091
01:53:34,280 --> 01:53:35,600
THINK IT'S CLEAR, THEY NEED TO

3092
01:53:35,600 --> 01:53:37,640
BE PUBLISHED, IF I HAD TO GUESS,

3093
01:53:37,640 --> 01:53:39,080
I WOULD IMAGINE THE PLACE WHERE

3094
01:53:39,080 --> 01:53:41,000
YOU CAN FIND THE MOST NEGATIVE

3095
01:53:41,000 --> 01:53:43,080
RESULTS WOULD BE IN CLINICAL

3096
01:53:43,080 --> 01:53:45,000
TRIALS BECAUSE THEY'RE

3097
01:53:45,000 --> 01:53:46,480
PREREGISTERED AND THEY'RE PUT

3098
01:53:46,480 --> 01:53:48,080
TOGETHER CAREFULLY AND YOU KNOW

3099
01:53:48,080 --> 01:53:51,040
IT JUST SEEMS LIKE IF YOU ASKED

3100
01:53:51,040 --> 01:53:53,280
EVERY INVESTIGATOR FOR A PLAGIN

3101
01:53:53,280 --> 01:53:54,520
THE BIOSKETCH WHICH PUBLICATIONS

3102
01:53:54,520 --> 01:53:58,160
COME FROM STUDIES THAT WERE

3103
01:53:58,160 --> 01:53:58,960
PREREGISTERED, EXPERIMENTS, THAT

3104
01:53:58,960 --> 01:54:02,040
IT MIGHT GIVE PEOPLE A LITTLE

3105
01:54:02,040 --> 01:54:04,440
MORE INTEREST AND CONCERN ABOUT

3106
01:54:04,440 --> 01:54:05,920
WHETHER THEY ARE REPORTING

3107
01:54:05,920 --> 01:54:08,880
NEGATIVE RESULTS FROM STUDIES,

3108
01:54:08,880 --> 01:54:10,640
THEY'VE DONE AND PREREGISTERED

3109
01:54:10,640 --> 01:54:11,560
EXPERIMENTS WILL CERTAINLY

3110
01:54:11,560 --> 01:54:15,480
PRODUCE MORE NEGATIVE RESULTS

3111
01:54:15,480 --> 01:54:17,360
THAN DISCOVERY EXPERIMENTS.

3112
01:54:17,360 --> 01:54:18,960
>> YES, THANK YOU FOR THAT
JOHN

3113
01:54:18,960 --> 01:54:23,720
AND I--YOU KNOW I FULLY AGREE

3114
01:54:23,720 --> 01:54:25,920
THAT, YOU KNOW PREREGISTRATION

3115
01:54:25,920 --> 01:54:27,480
OF CLINICAL TRIALS HAS GONE A

3116
01:54:27,480 --> 01:54:29,120
LONG WAY TO IDENTIFY, YOU KNOW

3117
01:54:29,120 --> 01:54:31,080
FIRST OF ALL IF THINGS WERE DONE

3118
01:54:31,080 --> 01:54:32,560
CAREFULLY AND WHERE THE NULL

3119
01:54:32,560 --> 01:54:36,800
RESULTS ARE AND SO ON.

3120
01:54:36,800 --> 01:54:45,280
FOR DISCOVERY SCIENCE IT'S

3121
01:54:45,280 --> 01:54:46,000
UNREALISTIC.

3122
01:54:46,000 --> 01:54:49,320
EVEN PROPONENTS, THE PROPONENTS

3123
01:54:49,320 --> 01:54:50,240
OF PREREGISTRATION WOULD SAY IT

3124
01:54:50,240 --> 01:54:52,880
PROBABLY TAKES ON THE ORDER OF

3125
01:54:52,880 --> 01:54:56,280
6-8 MONTHS TO GET IT, YOU KNOW

3126
01:54:56,280 --> 01:54:58,280
ACCEPT IT, AND I'M TALKING ABOUT

3127
01:54:58,280 --> 01:54:59,480
PREREGISTRATION BUT YOU PUT IT

3128
01:54:59,480 --> 01:55:00,920
IN YOUR OWN DATABASE SOMEWHERE

3129
01:55:00,920 --> 01:55:05,280
BUT IF YOU WANT TO HAVE THIS

3130
01:55:05,280 --> 01:55:08,120
KIND OF GET A STAMP OF APPROVAL

3131
01:55:08,120 --> 01:55:13,120
THAT TAKES SEVERAL MONTHS AND IN

3132
01:55:13,120 --> 01:55:14,400
PRECLINICAL STUDIES, IT'S, YOU

3133
01:55:14,400 --> 01:55:16,840
KNOW UNLIKELY THAT THE PEOPLE

3134
01:55:16,840 --> 01:55:18,920
WILL, YOU KNOW, NOT THE WAY

3135
01:55:18,920 --> 01:55:21,040
SCIENCE IS DONE, YOU KIND

3136
01:55:21,040 --> 01:55:23,160
OF--EXPERIMENTS HAPPEN ON A

3137
01:55:23,160 --> 01:55:24,160
WEEKLY BASIS WHERE, OH, WE FOUND

3138
01:55:24,160 --> 01:55:25,560
THIS, LET'S DO THIS, YOU WILL

3139
01:55:25,560 --> 01:55:28,320
NOT SIT NOW AND WAIT, LET'S

3140
01:55:28,320 --> 01:55:30,000
PLAY, LET'S DESIGN THIS

3141
01:55:30,000 --> 01:55:31,000
EXPERIMENTS WAIT 6 MONTHS AND

3142
01:55:31,000 --> 01:55:33,080
THEN DO THE EXPERIMENT.

3143
01:55:33,080 --> 01:55:35,000
SO, AND THE EXPERIMENTS HAVE

3144
01:55:35,000 --> 01:55:38,680
SHOWN THAT THIS HAS

3145
01:55:38,680 --> 01:55:39,200
ACTUALLY--HASN'T BEEN

3146
01:55:39,200 --> 01:55:43,600
SUCCESSFUL, IF YOU LOOK AT

3147
01:55:43,600 --> 01:55:45,560
PREREGISTRATION, ALL PLACES DO

3148
01:55:45,560 --> 01:55:46,480
PREREGISTRATION, THE VAST

3149
01:55:46,480 --> 01:55:47,800
MAJORITY OF STUDIES INVOLVE

3150
01:55:47,800 --> 01:55:50,240
HUMAN SUBJECTS AND THE REASON IS

3151
01:55:50,240 --> 01:55:53,040
NOT SURPRISING, BECAUSE IT TAKES

3152
01:55:53,040 --> 01:55:54,960
TIME BECAUSE YOU HAVE TO HAVE A

3153
01:55:54,960 --> 01:55:57,200
CLEAR PROJECT TOGETHER, YOU HAVE

3154
01:55:57,200 --> 01:55:59,640
TO GET IRB APPROVAL, ALL THOSE

3155
01:55:59,640 --> 01:56:01,480
TAKES TIME SO HAVE YOU TIME TO

3156
01:56:01,480 --> 01:56:04,120
PUT IN THE--TO ACTUALLY CREATE

3157
01:56:04,120 --> 01:56:04,760
REGISTER.

3158
01:56:04,760 --> 01:56:05,560
REGARDING THE REVIEWERS, YOU

3159
01:56:05,560 --> 01:56:07,480
KNOW WHICH I AGREE, YOU KNOW

3160
01:56:07,480 --> 01:56:09,880
BOTH YOU AND DAVID RAISED THE

3161
01:56:09,880 --> 01:56:12,320
ISSUE OF HOW DO YOU INCENTIVIZE

3162
01:56:12,320 --> 01:56:13,240
REVIEWERS, I THINK, YOU KNOW

3163
01:56:13,240 --> 01:56:15,560
THIS IS JUST AN IDEA, BUT, SINCE

3164
01:56:15,560 --> 01:56:18,200
WE ONLY LOOKING AT THE METHOD,

3165
01:56:18,200 --> 01:56:21,560
AND IF IT WAS DONE CAREFULLY,

3166
01:56:21,560 --> 01:56:24,440
PERHAPS POST DOCS COULD BE, YOU

3167
01:56:24,440 --> 01:56:26,520
KNOW GREAT REVIEWERS, BECAUSE

3168
01:56:26,520 --> 01:56:27,920
THEY'RE EXPERTS IN THEIR

3169
01:56:27,920 --> 01:56:29,640
TECHNIQUE AND FOR THEM, THE

3170
01:56:29,640 --> 01:56:30,880
BROWNIE POINTS WILL BE MORE THAN

3171
01:56:30,880 --> 01:56:32,720
ENOUGH TO SAY, YOU KNOW WE

3172
01:56:32,720 --> 01:56:33,560
ACTUALLY REVIEWED ALL THESE

3173
01:56:33,560 --> 01:56:37,640
STUDIES AND HAVE THAT ON THEIR

3174
01:56:37,640 --> 01:56:38,120
BIOSKETCH.

3175
01:56:38,120 --> 01:56:43,520
IT'S JUST AN IDEA. 

3176
01:56:43,520 --> 01:56:46,160
>> ANY OTHER COMMENTS?

3177
01:56:46,160 --> 01:56:48,360
OKAY, THANKS A LOT SHAI, THAT

3178
01:56:48,360 --> 01:56:49,400
WAS INCREDIBLY INTERESTING AND I

3179
01:56:49,400 --> 01:56:51,600
KNOW MIKE WAS HERE FOR MOST OF

3180
01:56:51,600 --> 01:56:52,000
YOUR PRESENTATION.

3181
01:56:52,000 --> 01:56:54,120
BECAUSE WHEN YOU TALK ABOUT IS

3182
01:56:54,120 --> 01:56:56,480
AN NIH WIDE EFFORT.

3183
01:56:56,480 --> 01:56:58,280
OKAY, WE ACTUALLY ARE AMAZING 3

3184
01:56:58,280 --> 01:56:59,560
ENOUGH, EXACTLY ON SCHEDULE.

3185
01:56:59,560 --> 01:57:00,840
WHY DON'T WE TAKE A 15 MINUTE

3186
01:57:00,840 --> 01:57:02,200
BREAK AND THEN WE WILL TESTIMONY

3187
01:57:02,200 --> 01:57:05,080
BACK AND TALK ABOUT THE

3188
01:57:05,080 --> 01:57:08,240
ALZHEIMER'S SUMMIT AND OTHER

3189
01:57:08,240 --> 01:57:09,640
THINGS. 

3190
01:57:09,640 --> 01:57:15,120
SO 3:15.

3191
01:57:15,120 --> 01:57:20,920
SO THE NEXT SEGMENT -- IS 

3192
01:57:20,920 --> 01:57:24,920
FROM -- THE POINT PERSON 

3193
01:57:24,920 --> 01:57:28,400
AHEAD OF THE NANDS'S 

3194
01:57:28,400 --> 01:57:32,400
ALZHEIMER'S DISEASE  PROGRAM 

3195
01:57:32,400 --> 01:57:32,920
AND HE IS GOING TO BE AN 

3196
01:57:32,920 --> 01:57:35,640
UPDATE ABOUT THIS AREA 

3197
01:57:35,640 --> 01:57:39,760
(ADRD). ROD, I ASSUME YOU 

3198
01:57:39,760 --> 01:57:40,280
WILL INTRODUCE OUR OTHER 

3199
01:57:40,280 --> 01:57:41,000
SPEAKER WHEN IT COMES TIME 

3200
01:57:41,000 --> 01:57:42,480
AND WE WILL TALK ABOUT THE 

3201
01:57:42,480 --> 01:57:45,560
ADRD SUMMIT. 

3202
01:57:45,560 --> 01:57:46,040
I HOPE I CAPTURED THIS 

3203
01:57:46,040 --> 01:57:49,240
CORRECTLY. 

3204
01:57:49,240 --> 01:57:58,280
>>YES, THANK YOU BOB. 

3205
01:57:58,280 --> 01:58:00,200
LZHEIMER'S DISEASE 
AND 

3206
01:58:00,200 --> 01:58:01,680
ALZHEIMER'S DISEASE RELATED 

3207
01:58:01,680 --> 01:58:02,240
DIMENSIONS ARE IRREVERSIBLE 

3208
01:58:02,240 --> 01:58:02,800
PROGRESSIVE BRAIN DISEASES 

3209
01:58:02,800 --> 01:58:03,880
THAT AFFECT MORE THAN  6 

3210
01:58:03,880 --> 01:58:04,400
MILLION AMERICANS AND THE 

3211
01:58:04,400 --> 01:58:05,960
NUMBER IS GROWING AS THE 

3212
01:58:05,960 --> 01:58:06,480
POPULATION AGES. THE MEASURE 

3213
01:58:06,480 --> 01:58:08,760
HAS AN ENORMOUS IMPACT ON THE 

3214
01:58:08,760 --> 01:58:10,240
HEALTH, FINANCES AND 

3215
01:58:10,240 --> 01:58:12,800
WELL-BEING OF INDIVIDUALS, 

3216
01:58:12,800 --> 01:58:17,320
FAMILIES AND THE SOCIETY. I 

3217
01:58:17,320 --> 01:58:20,440
ENCOURAGE YOU TO FOLLOW THE 

3218
01:58:20,440 --> 01:58:20,960
LINK HERE TO SEE A SHORT 

3219
01:58:20,960 --> 01:58:24,040
PRESENTATION PREPARED BY THE 

3220
01:58:24,040 --> 01:58:28,360
NADS OFFICE FOR THE ADRD 

3221
01:58:28,360 --> 01:58:36,280
SUMMIT.

3222
01:58:36,280 --> 01:58:39,600
IT'S VERY MOVING AND IT IS 

3223
01:58:39,600 --> 01:58:41,600
ABOUT THE ONES WHO LIVE WITH 

3224
01:58:41,600 --> 01:58:42,840
THE CONSEQUENCES OF THIS AND 

3225
01:58:42,840 --> 01:58:45,640
CONGRESSES CHOSEN TO ACT 

3226
01:58:45,640 --> 01:58:47,960
INCLUDING THE NATIONAL  ACT 

3227
01:58:47,960 --> 01:58:48,440
THAT OFFERS A HISTORIC 

3228
01:58:48,440 --> 01:58:49,520
OPPORTUNITY TO ADDRESS 

3229
01:58:49,520 --> 01:58:52,320
AD/ADRD. 

3230
01:58:52,320 --> 01:58:52,800
TODAY I WILL PROVIDE AN 

3231
01:58:52,800 --> 01:58:56,400
OVERVIEW OF THE NISD PROGRAM 

3232
01:58:56,400 --> 01:59:01,680
AND DOCTOR-- CHIEF OF THE 

3233
01:59:01,680 --> 01:59:02,160
NEUROLOGY DIVISION THE 

3234
01:59:02,160 --> 01:59:02,720
MASSACHUSETTS HOSPITAL WILL 

3235
01:59:02,720 --> 01:59:06,720
PRESENT THE ADRD SUMMIT 2022 

3236
01:59:06,720 --> 01:59:11,440
REPORT TO THE NANDS COUNCIL.

3237
01:59:11,440 --> 01:59:15,240
--- 

3238
01:59:15,240 --> 01:59:15,760
THE NATIONAL ALZHEIMER'S 

3239
01:59:15,760 --> 01:59:18,480
PROJECT ACT BECAME LAW IN 

3240
01:59:18,480 --> 01:59:19,120
2011 AND THE NATIONAL PLAN TO 

3241
01:59:19,120 --> 01:59:20,560
ADDRESS ALZHEIMER'S DISEASE

3242
01:59:20,560 --> 01:59:20,960
FIRST ISSUED BY THE 

3243
01:59:20,960 --> 01:59:21,480
DEPARTMENT OF HEALTH AND 

3244
01:59:21,480 --> 01:59:27,280
HUMAN SERVICES IN 2012, 

3245
01:59:27,280 --> 01:59:30,600
INCLUDES DEMENTIAS THAT

3246
01:59:30,600 --> 01:59:31,160
SHARE A SIGNIFICANT COGNITIVE 

3247
01:59:31,160 --> 01:59:31,720
AND PATHOLOGICAL FEATURES 

3248
01:59:31,720 --> 01:59:32,320
WITH ALZHEIMER'S DISEASE AND 

3249
01:59:32,320 --> 01:59:32,880
OFTEN COOCCUR WITH THIS AND 

3250
01:59:32,880 --> 01:59:35,360
THOSE BEINGLEWY BODY 

3251
01:59:35,360 --> 01:59:41,200
DEMENTIA, FTD, VCID OR 

3252
01:59:41,200 --> 01:59:43,320
VASCULAR AND MIXED DEMENTIAS. 

3253
01:59:43,320 --> 01:59:46,040
--- 

3254
01:59:46,040 --> 01:59:50,520
GOAL 1 OF THE NATIONAL PLAN 

3255
01:59:50,520 --> 01:59:53,480
IS TO PREVENT AND EFFECTIVELY 

3256
01:59:53,480 --> 01:59:54,360
TREAT ALZHEIMER'S DISEASE, 

3257
01:59:54,360 --> 01:59:54,840
AND ALZHEIMER'S DISEASE 

3258
01:59:54,840 --> 01:59:58,480
RELATED DEMENTIAS. THE NIH  

3259
01:59:58,480 --> 01:59:59,240
RESPONSE TO THE NATIONAL PLAN 

3260
01:59:59,240 --> 02:00:02,960
LED BY THE NIA INCLUDES 

3261
02:00:02,960 --> 02:00:05,680
SUMMITS THAT SET SCIENTIFIC 

3262
02:00:05,680 --> 02:00:10,360
PRIORITIES, MILESTONES AND 

3263
02:00:10,360 --> 02:00:10,920
IDENTIFY THE MOST URGENT 

3264
02:00:10,920 --> 02:00:11,520
RESEARCH NEEDED TO MEET GOAL 

3265
02:00:11,520 --> 02:00:13,720
ONE.

3266
02:00:13,720 --> 02:00:16,600
A SUMMIT IS HELD EACH YEAR 

3267
02:00:16,600 --> 02:00:21,480
ROTATING THROUGH ALZHEIMER'S 

3268
02:00:21,480 --> 02:00:22,080
DISEASE, ALZHEIMER'S DISEASE 

3269
02:00:22,080 --> 02:00:22,560
RELATED DEMENTIAS AND 

3270
02:00:22,560 --> 02:00:23,000
CARE/SERVICES/SUPPORT 

3271
02:00:23,000 --> 02:00:24,320
RESPECTIVELY. 

3272
02:00:24,320 --> 02:00:34,760
NIDS LEADS NIH IN ALZHEIMER'S 

3273
02:00:37,160 --> 02:00:37,680
DISEASE  RELATED DEMENTIAS 

3274
02:00:37,680 --> 02:00:38,240
INCLUDING THE ONE YOU HERE 

3275
02:00:38,240 --> 02:00:44,120
TODAY AND THENINDDS AND NIA 

3276
02:00:44,120 --> 02:00:44,640
COLLABORATE CLOSELY ON 

3277
02:00:44,640 --> 02:00:45,920
FUNDING OPPORTUNITIES AND 

3278
02:00:45,920 --> 02:00:46,520
SUPPLEMENT PROGRAMS TO EXPAND 

3279
02:00:46,520 --> 02:00:50,160
THE FIELD, PAY LINES AND 

3280
02:00:50,160 --> 02:00:51,080
TRIANNUAL SUMMITS AND TODAY I 

3281
02:00:51,080 --> 02:00:51,680
WANT TO ADD A COUPLE OF WORDS 

3282
02:00:51,680 --> 02:01:02,160
ABOUT THE NIDS/ADRD SUMMITS.

3283
02:01:04,680 --> 02:01:05,160
PART OF THE PROCESS THE 

3284
02:01:05,160 --> 02:01:05,720
PRESENTATION OF OUTCOMES TO 

3285
02:01:05,720 --> 02:01:12,920
THE IDEAS COUNCIL.  AND THE 

3286
02:01:12,920 --> 02:01:14,120
RECOMMENDATIONS IS APPROVED 

3287
02:01:14,120 --> 02:01:14,680
WILL BE SUBMITTED TO THE 

3288
02:01:14,680 --> 02:01:15,200
DEPARTMENT OF HEALTH AND 

3289
02:01:15,200 --> 02:01:15,760
HUMAN SERVICES AS HAS BEEN 

3290
02:01:15,760 --> 02:01:16,360
DONE THE PREVIOUS SUMMER SENT 

3291
02:01:16,360 --> 02:01:21,000
TO THE NAPA COUNSEL AS 

3292
02:01:21,000 --> 02:01:22,320
IMPLEMENTATION MILESTONES. IN 

3293
02:01:22,320 --> 02:01:28,240
ADDITION TO THE NAPA LAW 

3294
02:01:28,240 --> 02:01:28,840
ANOTHER WAY THE CONGRESS HAS 

3295
02:01:28,840 --> 02:01:29,480
ACTED IS TO ADD FUNDS 

3296
02:01:29,480 --> 02:01:32,360
AVAILABLE TO THE NIH FOR 

3297
02:01:32,360 --> 02:01:37,200
ALZHEIMER'S DISEASE AND 

3298
02:01:37,200 --> 02:01:37,760
ALZHEIMER'S DISEASE RELATED 

3299
02:01:37,760 --> 02:01:38,760
DEMENTIAS RESEARCH.

3300
02:01:38,760 --> 02:01:39,680
THE NUMBER SHOWN HERE ARE 

3301
02:01:39,680 --> 02:01:49,320
FROM PUBLIC NIH CATEGORICAL 

3302
02:01:49,320 --> 02:01:51,280
SPENDING DATA FROM THE 

3303
02:01:51,280 --> 02:01:56,480
NATIONAL DATABASE AND SINCE 

3304
02:01:56,480 --> 02:01:57,040
2016 SPENDING HAS INCREASED 

3305
02:01:57,040 --> 02:01:57,560
MORE THAN FIVEFOLD WITH 

3306
02:01:57,560 --> 02:01:59,040
SIMILAR INCREASES  ACROSS THE 

3307
02:01:59,040 --> 02:02:08,040
BOARD FOR ALL OF THE AD AND 

3308
02:02:08,040 --> 02:02:09,240
ADRD DISEASE AND RESEARCH 

3309
02:02:09,240 --> 02:02:09,600
AREAS.

3310
02:02:09,600 --> 02:02:17,560
FUNDING FOR THE NINDS AD/ADRD 

3311
02:02:17,560 --> 02:02:18,640
 PROGRAMS HAS COME FROM CLOSE 

3312
02:02:18,640 --> 02:02:19,120
COLLABORATION WITH THE 

3313
02:02:19,120 --> 02:02:23,320
NATIONAL INSTITUTE ON AGING 

3314
02:02:23,320 --> 02:02:27,320
AND AD FUNDS THAT ARE 

3315
02:02:27,320 --> 02:02:29,240
TARGETED BY CONGRESS ARE 

3316
02:02:29,240 --> 02:02:39,280
PROVIDED TO THE ADRD. 

3317
02:02:39,280 --> 02:02:39,760
YOU CAN SEE HERE IN THE 

3318
02:02:39,760 --> 02:02:40,720
GRAYBAR THE FUNDS THAT HAVE 

3319
02:02:40,720 --> 02:02:41,240
BEEN ADDED BECAUSE OF OUR 

3320
02:02:41,240 --> 02:02:44,640
CLOSE WORK WITH THE NIA. 

3321
02:02:44,640 --> 02:02:46,480
BOTH INVESTIGATOR INITIATED 

3322
02:02:46,480 --> 02:02:48,160
RESEARCH AND THE RESEARCH 

3323
02:02:48,160 --> 02:02:49,920
RESPONSE TO THE ALZHEIMER'S 

3324
02:02:49,920 --> 02:02:50,480
DISEASE, AND ALZHEIMER'S 

3325
02:02:50,480 --> 02:02:58,520
DISEASE RELATED DEMENTIA 

3326
02:02:58,520 --> 02:02:59,000
INITIATIVES,  BOTH PLAY 

3327
02:02:59,000 --> 02:02:59,600
CRITICAL ROLES IN THE WORK 

3328
02:02:59,600 --> 02:03:03,640
THAT WE DO. 

3329
02:03:03,640 --> 02:03:04,240
 I WANT TO GIVE AN EXAMPLE OF 

3330
02:03:04,240 --> 02:03:11,480
A RECENT INVESTIGATOR 

3331
02:03:11,480 --> 02:03:12,880
INITIATIVE.

3332
02:03:12,880 --> 02:03:16,840
I WANT TO SHOW A SAMPLE OF 

3333
02:03:16,840 --> 02:03:17,320
THE RECENT INVESTIGATOR 

3334
02:03:17,320 --> 02:03:17,920
INITIATED SCIENTIFIC ADVANCE. 

3335
02:03:17,920 --> 02:03:25,080
THIS 22 STUDY BY KOROBEYNIKOV 

3336
02:03:25,080 --> 02:03:29,800
AND COLLEGAUES HAS DEVELOPED 

3337
02:03:29,800 --> 02:03:33,800
-- THE FUSED AND SARCOMA GENE 

3338
02:03:33,800 --> 02:03:37,840
OR FUS AND COACH AND RNA 

3339
02:03:37,840 --> 02:03:40,640
BINDING PROTEIN AND CERTAIN 

3340
02:03:40,640 --> 02:03:47,040
MUTATIONS CAUSE ALS OR FTD. 

3341
02:03:47,040 --> 02:03:47,520
MOTIVATED BY PROMISING 

3342
02:03:47,520 --> 02:03:50,040
BIOCHEMICAL AND PHENOTYPIC 

3343
02:03:50,040 --> 02:03:51,160
RESULTS 

3344
02:03:51,160 --> 02:03:53,240
IN MODEL-BASED STUDIES AND 

3345
02:03:53,240 --> 02:03:53,840
CONSISTENT WITH FINDINGS FROM 

3346
02:03:53,840 --> 02:03:59,400
OTHER STUDIES INCLUDING FROM 

3347
02:03:59,400 --> 02:04:00,000
TORONIDOL, THIS WILL PUBLISH 

3348
02:04:00,000 --> 02:04:00,800
THE FIRST IN HUMAN STUDY, 

3349
02:04:00,800 --> 02:04:06,360
WITH A DRUG ION 363. A 

3350
02:04:06,360 --> 02:04:09,520
NON-ALLELE SPECIFIC FOS 

3351
02:04:09,520 --> 02:04:15,600
ANTISENS AND ANTINUCLEOTIDE.

3352
02:04:15,600 --> 02:04:16,160
AND YOU CAN SEE ON THE LEFT 

3353
02:04:16,160 --> 02:04:17,080
PART OF THE SLIDE THE RESULTS 

3354
02:04:17,080 --> 02:04:19,920
WHICH FOCUSES ON MOTOR 

3355
02:04:19,920 --> 02:04:22,440
FUNCTIONING DURING TREATMENT. 

3356
02:04:22,440 --> 02:04:23,000
UNFORTUNATELY THE PATIENT 

3357
02:04:23,000 --> 02:04:23,520
PASSED AWAY ABOUT A YEAR 

3358
02:04:23,520 --> 02:04:24,800
LATER, AND AGAIN THIS WAS THE 

3359
02:04:24,800 --> 02:04:29,800
FIRST IN-HUMAN STUDY. HOWEVER 

3360
02:04:29,800 --> 02:04:34,360
BIOCHEMICAL AND ANALYSIS 

3361
02:04:34,360 --> 02:04:35,120
SHOWN HERE HAVE SHOWN THAT 

3362
02:04:35,120 --> 02:04:36,600
THE TREATMENT DECREASED LEVEL 

3363
02:04:36,600 --> 02:04:41,160
OF FUS PROTEIN IN THE 

3364
02:04:41,160 --> 02:04:41,760
PATIENT, AND YOU CAN SEE THAT 

3365
02:04:41,760 --> 02:04:42,880
IN THIS COLUMN HE COMPARED TO 

3366
02:04:42,880 --> 02:04:46,560
THE CONTROL COLUMNS. 

3367
02:04:46,560 --> 02:04:48,200
SO ALSO YOU CAN SEE IT HERE 

3368
02:04:48,200 --> 02:04:58,640
IN TERMS OF IMMUNO HISTIC 

3369
02:05:01,760 --> 02:05:02,480
CHEMISTRY. SO THERE IS A LOT 

3370
02:05:02,480 --> 02:05:08,920
OF WORK LEFT TO DO,    BUT 

3371
02:05:08,920 --> 02:05:09,480
THIS IS AN IMPORTANT STEP 

3372
02:05:09,480 --> 02:05:09,920
TOWARDS DEVELOPING A 

3373
02:05:09,920 --> 02:05:10,520
SUCCESSFUL TREATMENT AND IN 

3374
02:05:10,520 --> 02:05:10,960
TERMS OF RESEARCH AND 

3375
02:05:10,960 --> 02:05:15,760
PROBABLY RESPONDING TO THE 

3376
02:05:15,760 --> 02:05:20,040
NINDS FUNDS ANNOUNCED, FUNDS 

3377
02:05:20,040 --> 02:05:24,120
SINCE 2016 HAVE FACILITATED 

3378
02:05:24,120 --> 02:05:26,800
MAJOR RESEARCH PROGRAMS THAT 

3379
02:05:26,800 --> 02:05:27,440
YOU CAN SEE HERE AND INCLUDE  

3380
02:05:27,440 --> 02:05:28,040
FLACCID PROGRAMS LIKE THE OLD 

3381
02:05:28,040 --> 02:05:30,440
FTD NATURAL HISTORY STUDY AND 

3382
02:05:30,440 --> 02:05:31,560
THE NIA CENTER FOR 

3383
02:05:31,560 --> 02:05:38,480
ALZHEIMER'S RESEARCH OR CAR 

3384
02:05:38,480 --> 02:05:39,040
HERE. ALL OF THESE PROGRAMS 

3385
02:05:39,040 --> 02:05:40,320
ARE CONTRIBUTED IMPORTANT 

3386
02:05:40,320 --> 02:05:40,920
SCIENTIFIC ADVANCES

3387
02:05:40,920 --> 02:05:41,480
AND I DON'T HAVE TIME TO DO 

3388
02:05:41,480 --> 02:05:42,320
JUSTICE TO THE SIGNS

3389
02:05:42,320 --> 02:05:42,880
OF THESE TREMENDOUS PROGRAMS 

3390
02:05:42,880 --> 02:05:43,640
TODAY

3391
02:05:43,640 --> 02:05:45,960
BUT I WILL MENTION A FEW. 

3392
02:05:45,960 --> 02:05:49,360
--- ONE EXAMPLE IS A RECENT 

3393
02:05:49,360 --> 02:05:49,760
PAPER INVOLVING THE 

3394
02:05:49,760 --> 02:05:51,200
STRUCTURAL BIOLOGY CONSORTIUM 

3395
02:05:51,200 --> 02:05:57,160
AND THE LEWI BODY CENTER 

3396
02:05:57,160 --> 02:05:59,920
WITHOUT WALLS. 

3397
02:05:59,920 --> 02:06:02,320
--- 

3398
02:06:02,320 --> 02:06:06,320
IN A SERIES OF PAPERS THIS 

3399
02:06:06,320 --> 02:06:06,800
YEAR, SEVERAL GROUPS 

3400
02:06:06,800 --> 02:06:15,960
DISCOVERED

3401
02:06:15,960 --> 02:06:16,440
AND YOU MISSED ALL THE 

3402
02:06:16,440 --> 02:06:18,360
PROTEIN THAT IS ASSOCIATED 

3403
02:06:18,360 --> 02:06:22,080
WITH MULTIPLE AD/ADRD 

3404
02:06:22,080 --> 02:06:28,200
DIAGNOSIS. 

3405
02:06:28,200 --> 02:06:34,440
TMEM 106B WAS NOT UNKNOWN AS 

3406
02:06:34,440 --> 02:06:35,240
A LYSOSOMAL TRANSMEMBRANE 

3407
02:06:35,240 --> 02:06:36,360
PROTEIN THAT HAVE BEEN 

3408
02:06:36,360 --> 02:06:36,960
REPORTED PREVIOUSLY AS A RISK 

3409
02:06:36,960 --> 02:06:41,960
GENE FOR FTD. 

3410
02:06:41,960 --> 02:06:43,960
AND IF WE LOOK OVER HERE IS 

3411
02:06:43,960 --> 02:06:48,120
EXPECTED TMEM106B IS 

3412
02:06:48,120 --> 02:06:50,720
EXPRESSED IN THE BRAINS WITH 

3413
02:06:50,720 --> 02:06:51,320
NORMAL INDIVIDUALS AND PEOPLE 

3414
02:06:51,320 --> 02:06:57,040
WITH CONFIRMED FTLD-TDP, PSP 

3415
02:06:57,040 --> 02:06:59,040
AND DLB. 

3416
02:06:59,040 --> 02:07:02,400
WHAT IS SURPRISING IS THAT 

3417
02:07:02,400 --> 02:07:09,200
WHEN THE FTLD/TDP, PSP AND 

3418
02:07:09,200 --> 02:07:19,680
DLB BRAINS WERE USED TO -- 

3419
02:07:30,560 --> 02:07:31,000
THE MASK SPECTROMETRY TO 

3420
02:07:31,000 --> 02:07:40,920
DISCOVER THAT TMEM106B  IS 

3421
02:07:40,920 --> 02:07:41,520
BEEN FOLDED SO IT IS BEHAVING 

3422
02:07:41,520 --> 02:07:42,040
LIKE A CLASSIC MISFORMED 

3423
02:07:42,040 --> 02:07:43,680
PROTEIN OF DEMENTIA AND 

3424
02:07:43,680 --> 02:07:46,880
TMEM106B  IS PRESENT ACROSS 

3425
02:07:46,880 --> 02:07:57,360
DIFFERENT AD/ADRD DIAGNOSIS. 

3426
02:08:15,400 --> 02:08:17,240
AT FIRST IT ACTUALLY SEEMS 

3427
02:08:17,240 --> 02:08:22,320
QUITE SURPRISING-- AND OF THE 

3428
02:08:22,320 --> 02:08:22,880
PAST  YEARS THERE HAS BEEN 

3429
02:08:22,880 --> 02:08:23,480
EMPHASIS ON MULTIPLE PATHWAYS 

3430
02:08:23,480 --> 02:08:24,080
TO DEMENTIA AND INCLUDES RISK 

3431
02:08:24,080 --> 02:08:26,280
FACTORS SUCH AS FOR LIFESTYLE 

3432
02:08:26,280 --> 02:08:26,880
ENVIRONMENTS, PSYCHOSOCIAL AS 

3433
02:08:26,880 --> 02:08:34,160
WELL AS VASCULAR DISEASE AND 

3434
02:08:34,160 --> 02:08:34,760
CLASSIC MISFOLDED PROTEINS 

3435
02:08:34,760 --> 02:08:37,680
HERE AND TMEM106B FITS INTO 

3436
02:08:37,680 --> 02:08:40,560
THIS PICTURE. 

3437
02:08:40,560 --> 02:08:46,560
AND, IT SORT OF NOT ONLY FITS 

3438
02:08:46,560 --> 02:08:49,240
IN

3439
02:08:49,240 --> 02:08:49,800
THE DRAIN FORCES THAT STILL 

3440
02:08:49,800 --> 02:09:00,280
EMERGING AND MODERN VIEW OF 

3441
02:09:02,840 --> 02:09:04,200
ALZHEIMER'S DISEASE AND 

3442
02:09:04,200 --> 02:09:04,760
ALZHEIMER'S DISEASE RELATED 

3443
02:09:04,760 --> 02:09:13,000
DIMENSIA AND HOW IT AFFECTS 

3444
02:09:13,000 --> 02:09:14,400
INDIVIDUALS TO TREAT AND 

3445
02:09:14,400 --> 02:09:15,920
PREVENT DEMENTIA.

3446
02:09:15,920 --> 02:09:19,880
THE TRADITIONAL PERCEPTION OF 

3447
02:09:19,880 --> 02:09:21,240
RELATIONSHIP BETWEEN CLINICAL 

3448
02:09:21,240 --> 02:09:21,840
DIAGNOSIS AND PATHOLOGY IS 

3449
02:09:21,840 --> 02:09:23,120
SHOWN HERE AND YOU SEE THIS 

3450
02:09:23,120 --> 02:09:33,520
STRAIGHT LINE ARROWS. 

3451
02:09:35,160 --> 02:09:38,240
I JUST WANT TO MENTION WERE 

3452
02:09:38,240 --> 02:09:41,280
IDENTIFIED BUT THE REVIEWED 

3453
02:09:41,280 --> 02:09:41,760
SOMETHING DIFFERENT NOT 

3454
02:09:41,760 --> 02:09:44,160
MAINSTREAM

3455
02:09:44,160 --> 02:09:44,760
AND WHAT WE HAVE LEARNED OVER 

3456
02:09:44,760 --> 02:09:46,200
TIME IS THAT THIS

3457
02:09:46,200 --> 02:09:46,800
TRADITIONAL PERCEPTION IS THE 

3458
02:09:46,800 --> 02:09:47,200
EXCEPTION

3459
02:09:47,200 --> 02:09:56,720
AND NOT THE RULE. THEY ARE 

3460
02:09:56,720 --> 02:09:58,800
NOW MANY STUDIES THAT HAVE 

3461
02:09:58,800 --> 02:10:00,720
DEMONSTRATED THIS FROM A 

3462
02:10:00,720 --> 02:10:01,400
STUDY AT RUSH UNIVERSITY IN 

3463
02:10:01,400 --> 02:10:02,480
CHICAGO. 

3464
02:10:02,480 --> 02:10:07,360
THIS STUDY HAS ABOUT 450 

3465
02:10:07,360 --> 02:10:08,720
PEOPLE FROM COMMUNITY-BASED 

3466
02:10:08,720 --> 02:10:10,320
POPULATIONS WHO HAD A 

3467
02:10:10,320 --> 02:10:10,800
CLINICAL DIAGNOSIS OF 

3468
02:10:10,800 --> 02:10:14,440
PROBABLE ALZHEIMER'S DEMENTIA 

3469
02:10:14,440 --> 02:10:19,680
DURING LIFE AND DONATED THEIR 

3470
02:10:19,680 --> 02:10:20,200
BRAINS FOR FOLLOW-UP WITH 

3471
02:10:20,200 --> 02:10:20,800
PATHOLOGICAL DIAGNOSIS AFTER 

3472
02:10:20,800 --> 02:10:21,360
THEY PASSED AWAY.

3473
02:10:21,360 --> 02:10:23,440
--- 

3474
02:10:23,440 --> 02:10:24,320
ON THE LEFT YOU CAN SEE THAT 

3475
02:10:24,320 --> 02:10:24,800
THE PROPORTION OF THESE 

3476
02:10:24,800 --> 02:10:27,160
INDIVIDUALS WHO HAVE ONLY AD 

3477
02:10:27,160 --> 02:10:29,400
PATHOLOGY IN THE BRAIN IS 

3478
02:10:29,400 --> 02:10:32,320
VERY SMALL, REPRESENTED BY 

3479
02:10:32,320 --> 02:10:36,920
THIS THIN WEDGE RIGHT HERE. 

3480
02:10:36,920 --> 02:10:37,720
ON THE RIGHT WHICH COMBINES 

3481
02:10:37,720 --> 02:10:40,680
ALL OF THE GROUPS THAT HAD AD 

3482
02:10:40,680 --> 02:10:41,240
PATHOLOGY WITH AT LEAST ONE 

3483
02:10:41,240 --> 02:10:45,320
OTHER PATHOLOGY, IT IS VERY 

3484
02:10:45,320 --> 02:10:45,920
CLEAR THAT MIXED PATHOLOGIES 

3485
02:10:45,920 --> 02:10:49,000
DOMINATE.

3486
02:10:49,000 --> 02:10:50,520
WHAT IS ALSO INTERESTING IS 

3487
02:10:50,520 --> 02:10:51,120
THAT A SIGNIFICANT PROPORTION 

3488
02:10:51,120 --> 02:10:53,200
OF THOSE CLINICALLY DIAGNOSED 

3489
02:10:53,200 --> 02:10:53,760
WITH PROBABLE ALZHEIMER'S 

3490
02:10:53,760 --> 02:10:56,440
DEMENTIA DON'T HAVE AD 

3491
02:10:56,440 --> 02:10:58,480
PATHOLOGY AT ALL. 

3492
02:10:58,480 --> 02:10:59,880
AND YOU CAN SEE SOME OF THOSE 

3493
02:10:59,880 --> 02:11:07,520
IN THESE TWO WEDGES HERE, FOR 

3494
02:11:07,520 --> 02:11:09,440
OD+VASCULAR AND VASCULAR 

3495
02:11:09,440 --> 02:11:10,080
ONLY. 

3496
02:11:10,080 --> 02:11:14,360
--- 

3497
02:11:14,360 --> 02:11:14,920
WE CANNOT RELIABLY KNOW THE 

3498
02:11:14,920 --> 02:11:15,520
PATHOLOGIST PRESENT BASED ON 

3499
02:11:15,520 --> 02:11:20,240
CLINICAL DIAGNOSIS ALONE; WHY 

3500
02:11:20,240 --> 02:11:22,960
DOES THIS MATTER?

3501
02:11:22,960 --> 02:11:23,480
IT MATTERS BECAUSE WE MUST 

3502
02:11:23,480 --> 02:11:26,400
TREAT INDIVIDUALS WITH 

3503
02:11:26,400 --> 02:11:28,720
INCREASED RECOGNITION THAT 

3504
02:11:28,720 --> 02:11:29,200
MORE THAN ONE OF THESE 

3505
02:11:29,200 --> 02:11:29,800
PROCESSES TYPICALLY PRESENT 

3506
02:11:29,800 --> 02:11:34,400
IN A PERSON'S BRAIN CAN BE 

3507
02:11:34,400 --> 02:11:35,240
MOVED TO  HEALTH TREATMENTS 

3508
02:11:35,240 --> 02:11:35,760
AND RECOGNITION OF THOSE 

3509
02:11:35,760 --> 02:11:36,320
PROCESSES THAT ARE RELEVANT 

3510
02:11:36,320 --> 02:11:37,600
IN INDIVIDUAL'S BRAIN -- 

3511
02:11:37,600 --> 02:11:42,280
MAKES US TURN TO BIOMARKERS. 

3512
02:11:42,280 --> 02:11:46,120
--- 

3513
02:11:46,120 --> 02:11:48,120
AN EXAMPLE. 

3514
02:11:48,120 --> 02:11:49,200
THERE ARE A NUMBER OF 

3515
02:11:49,200 --> 02:11:54,720
PROGRAMS SUPPORTED BY NINDS 

3516
02:11:54,720 --> 02:12:05,160
ON BIOMARKERS AND MARK -- 

3517
02:12:08,040 --> 02:12:08,520
VCID  WAS ESTABLISHED BY 

3518
02:12:08,520 --> 02:12:09,040
INITIATIVES DESIGNED TO 

3519
02:12:09,040 --> 02:12:10,680
CREATE A NATIONAL CONSORTIUM 

3520
02:12:10,680 --> 02:12:11,080
OF SCIENTIFIC AND 

3521
02:12:11,080 --> 02:12:11,640
EXPERIMENTAL INFRASTRUCTURE 

3522
02:12:11,640 --> 02:12:17,240
TO DEVELOP VIA A MULTISITE 

3523
02:12:17,240 --> 02:12:18,280
TESTING AN INSTRUMENTAL 

3524
02:12:18,280 --> 02:12:20,720
VIOLATION AND ULTIMATELY 

3525
02:12:20,720 --> 02:12:25,640
CLINICAL  VALIDATION OF VCID 

3526
02:12:25,640 --> 02:12:27,360
MARKERS INCLUDING, 

3527
02:12:27,360 --> 02:12:28,560
ARTERIOSCLEROSIS, 

3528
02:12:28,560 --> 02:12:29,960
CEREBROVASCULAR REACTIVITY, 

3529
02:12:29,960 --> 02:12:38,400
MRI FREE WATER, PEAKED 

3530
02:12:38,400 --> 02:12:38,680
SKELETONIZED

3531
02:12:38,680 --> 02:12:49,200
D MEAN DIFFUSIVITYAND ALL OF 

3532
02:12:56,720 --> 02:12:57,160
HIS CLINICAL VALIDATION 

3533
02:12:57,160 --> 02:12:58,600
STUDIES ARE APPROPRIATELY 

3534
02:12:58,600 --> 02:13:02,560
POWERED FOR LONG TERM TRIALS 

3535
02:13:02,560 --> 02:13:03,160
INCLUDING BLACK AND HISPANIC 

3536
02:13:03,160 --> 02:13:06,360
POPULATIONS. 

3537
02:13:06,360 --> 02:13:09,320
OTHER NINDS/ADRD PROGRAMS 

3538
02:13:09,320 --> 02:13:09,880
THAT ADDRESS HEALTH EQUITY 

3539
02:13:09,880 --> 02:13:18,040
INCLUDE THE DETECTCID 

3540
02:13:18,040 --> 02:13:18,640
PROGRAM, AN EFFORT TO IMPROVE 

3541
02:13:18,640 --> 02:13:21,360
THE QUALITY AND FREQUENCY OF 

3542
02:13:21,360 --> 02:13:21,880
COGNITIVE IMPAIRMENT IN 

3543
02:13:21,880 --> 02:13:25,440
EVERYDAY CLINICAL SETTINGS. 

3544
02:13:25,440 --> 02:13:25,960
DETECTCID HAS ENTERED ITS 

3545
02:13:25,960 --> 02:13:33,440
SECOND PHASE IN PRAGMATIC 

3546
02:13:33,440 --> 02:13:37,760
CLINICAL TRIALS ARE UNDERWAY. 

3547
02:13:37,760 --> 02:13:40,320
THE REGARD STUDIES HAS BEEN A 

3548
02:13:40,320 --> 02:13:41,920
LONG-TERM STUDY THAT IN 

3549
02:13:41,920 --> 02:13:42,400
ADDITION TO STROKE HAS 

3550
02:13:42,400 --> 02:13:44,840
INCLUDED A FACTOR ON VASCULAR 

3551
02:13:44,840 --> 02:13:46,080
CONTRIBUTIONS TO COGNITIVE 

3552
02:13:46,080 --> 02:13:50,040
IMPAIRMENT VCID. 

3553
02:13:50,040 --> 02:13:50,960
WE HAVE A RESEARCH SUPPLEMENT 

3554
02:13:50,960 --> 02:13:53,720
PROGRAM TO PROMOTE DIVERSITY 

3555
02:13:53,720 --> 02:13:57,520
IN HEALTH RELATED RESEARCH. 

3556
02:13:57,520 --> 02:14:00,480
I ALREADY MENTIONED MARK 

3557
02:14:00,480 --> 02:14:04,760
VCID. 

3558
02:14:04,760 --> 02:14:07,560
BUT DISCOVERY TO UNDERSTAND 

3559
02:14:07,560 --> 02:14:08,560
HOW STROKING COMORBIDITIES 

3560
02:14:08,560 --> 02:14:09,120
LEAD TO DEMENTIA AS WELL AS 

3561
02:14:09,120 --> 02:14:11,440
DIVERSE VCID REGARDING THE 

3562
02:14:11,440 --> 02:14:14,400
CLINICAL SIGNIFICANCE OF 

3563
02:14:14,400 --> 02:14:14,920
INCIDENTAL WHITE MATTER 

3564
02:14:14,920 --> 02:14:17,280
LESIONS FOR DEMENTIA. ALL OF 

3565
02:14:17,280 --> 02:14:19,720
THESE PROGRAMS REQUIRE THAT 

3566
02:14:19,720 --> 02:14:20,240
DIVERSITY BE EXPLICITLY 

3567
02:14:20,240 --> 02:14:20,960
CONSIDERED BOTH IN THE RFA 

3568
02:14:20,960 --> 02:14:24,080
AND IN THE MILESTONES OF 

3569
02:14:24,080 --> 02:14:24,840
THESE PROGRAMS. 

3570
02:14:24,840 --> 02:14:28,920
--- 

3571
02:14:28,920 --> 02:14:30,760
THE MIND YOUR RISKS CAMPAIGN 

3572
02:14:30,760 --> 02:14:33,320
IS ANOTHER WONDERFUL WAY THAT 

3573
02:14:33,320 --> 02:14:35,840
THE NIDS PRIORITIZES AN 

3574
02:14:35,840 --> 02:14:38,720
ACTION HEALTH EQUITY AND THE 

3575
02:14:38,720 --> 02:14:39,240
IMPORTANCE OF CONTROLLING 

3576
02:14:39,240 --> 02:14:39,760
BLOOD PRESSURE TO PREVENT 

3577
02:14:39,760 --> 02:14:45,520
BOTH STROKE AND DEMENTIA. 

3578
02:14:45,520 --> 02:14:50,000
THIS AGAIN WAS CREATED BY THE 

3579
02:14:50,000 --> 02:14:54,440
NINDS ONCE OFFICE. 

3580
02:14:54,440 --> 02:14:55,040
I ENCOURAGE YOU TO LOOK AT IT 

3581
02:14:55,040 --> 02:14:55,600
AND I WANT TO TAKE A MOMENT 

3582
02:14:55,600 --> 02:15:01,000
TO TALK ABOUT THE NINDS 

3583
02:15:01,000 --> 02:15:01,560
FUNDING INITIATIVE THAT IS 

3584
02:15:01,560 --> 02:15:02,080
ALREADY OPEN OR PLAN FOR 

3585
02:15:02,080 --> 02:15:02,640
FISCAL YEAR 2023. 

3586
02:15:02,640 --> 02:15:08,440
--- 

3587
02:15:08,440 --> 02:15:08,960
THERE ARE QUITE A NUMBER OF 

3588
02:15:08,960 --> 02:15:12,840
THESE PROGRAMS. 

3589
02:15:12,840 --> 02:15:13,400
THE FIRST MENTION THAT I WANT 

3590
02:15:13,400 --> 02:15:16,520
TO SAY HERE IS THAT THE 

3591
02:15:16,520 --> 02:15:17,080
RESEARCH PROMOTED BY THESE 

3592
02:15:17,080 --> 02:15:18,240
PROGRAMS IS TIED INTO THE 

3593
02:15:18,240 --> 02:15:22,560
PRINCIPLES THAT I MENTIONED 

3594
02:15:22,560 --> 02:15:23,120
EARLIER, MULTIPLE POTENTIAL 

3595
02:15:23,120 --> 02:15:25,480
PATHWAYS TO DEMENTIA IN 

3596
02:15:25,480 --> 02:15:26,040
POPULATIONS AND INDIVIDUALS 

3597
02:15:26,040 --> 02:15:26,520
AND YOU CAN SEE THAT 

3598
02:15:26,520 --> 02:15:28,840
REFLECTED IN THE THEME: 

3599
02:15:28,840 --> 02:15:29,280
SOCIAL DETERMINANTS, 

3600
02:15:29,280 --> 02:15:33,800
MODIFIABLE RISK, MECHANISMS 

3601
02:15:33,800 --> 02:15:34,760
AND PATHOLOGY, MICROBIOME, 

3602
02:15:34,760 --> 02:15:38,160
CVOID-19 AND DEMENTIA AND SO 

3603
02:15:38,160 --> 02:15:42,120
ONB. 

3604
02:15:42,120 --> 02:15:44,720
WORKFORCE DEVELOPING TRAINING 

3605
02:15:44,720 --> 02:15:45,240
PROGRAMS, FOR DIVERSITY 

3606
02:15:45,240 --> 02:15:45,960
TRAINING AND CAREER AND FOR A 

3607
02:15:45,960 --> 02:15:46,760
COMPLETE LISTING PLEASE VISIT 

3608
02:15:46,760 --> 02:15:57,280
THE NIDS FOCUS ON THE ADRD/AD 

3609
02:15:59,320 --> 02:16:02,560
PAGE. 

3610
02:16:02,560 --> 02:16:03,440
AND I WAS A LITTLE BIT MORE 

3611
02:16:03,440 --> 02:16:04,200
ABOUT THE OPEN ANNOUNCEMENTS.

3612
02:16:04,200 --> 02:16:09,080
--- 

3613
02:16:09,080 --> 02:16:09,440
FOR THESE FUNDING 

3614
02:16:09,440 --> 02:16:10,000
ANNOUNCEMENTS THERE'S A LOT 

3615
02:16:10,000 --> 02:16:10,520
OF INFORMATION HERE AND I 

3616
02:16:10,520 --> 02:16:12,040
WON'T GO OVER IT ALL IN 

3617
02:16:12,040 --> 02:16:13,520
DETAIL. I AM HAPPY TO SHARE 

3618
02:16:13,520 --> 02:16:14,040
PDF OF THE INITIAL SLIDES 

3619
02:16:14,040 --> 02:16:14,560
WITH ANYONE AND PLEASE DO 

3620
02:16:14,560 --> 02:16:15,120
ASK. 

3621
02:16:15,120 --> 02:16:19,680
I DO WANT TO MENTION THAT THE 

3622
02:16:19,680 --> 02:16:21,360
ANNOUNCEMENTS ARE LISTED IN 

3623
02:16:21,360 --> 02:16:26,200
THE ORDER OF RECEIPT DATES. 

3624
02:16:26,200 --> 02:16:26,800
SO IF YOU DO A SCREENSHOT OR 

3625
02:16:26,800 --> 02:16:29,160
AS YOU LOOK AT THESE, THE  

3626
02:16:29,160 --> 02:16:31,320
FIRSTDUE DATES ARE LISTED 

3627
02:16:31,320 --> 02:16:36,640
FIRST AND THE LATER DUE DATES 

3628
02:16:36,640 --> 02:16:37,200
ARE LISTED LATER AND ON THE 

3629
02:16:37,200 --> 02:16:38,120
SLIDES ARE THE DISEASE 

3630
02:16:38,120 --> 02:16:40,520
MECHANISMS FOAS LISTED IN 

3631
02:16:40,520 --> 02:16:45,240
ORANGE AND THERE ARE NINE OF 

3632
02:16:45,240 --> 02:16:46,000
THEM AND FOUR ON TRAINING 

3633
02:16:46,000 --> 02:16:47,000
LISTED IN BLUE HERE. 

3634
02:16:47,000 --> 02:16:50,720
--- 

3635
02:16:50,720 --> 02:16:53,200
 WE ALSO HAVE INITIATIVES ON 

3636
02:16:53,200 --> 02:16:53,760
CLINICAL TRIALS, CLINICAL 

3637
02:16:53,760 --> 02:16:55,480
RESEARCH AND TRANSLATION. 

3638
02:16:55,480 --> 02:16:56,320
WITH THREE FOUR TRANSLATION 

3639
02:16:56,320 --> 02:16:58,960
AND FIVE INITIATIVES IN 

3640
02:16:58,960 --> 02:17:00,000
CLINICAL TRIALS. 

3641
02:17:00,000 --> 02:17:02,080
--- 

3642
02:17:02,080 --> 02:17:09,520
I ALSO WANT TO SAY AS WE GO 

3643
02:17:09,520 --> 02:17:10,120
OVER VERY QUICKLY THE SLIDES 

3644
02:17:10,120 --> 02:17:11,360
THAT SHOW THE INITIATIVES 

3645
02:17:11,360 --> 02:17:12,440
THAT NO RFA IS NEEDED TO 

3646
02:17:12,440 --> 02:17:14,280
APPLY. 

3647
02:17:14,280 --> 02:17:22,960
THE NIDS SPECIAL AD/ADRD  

3648
02:17:22,960 --> 02:17:23,480
PALIN FOR INVESTIGATOR 

3649
02:17:23,480 --> 02:17:24,040
INITIATED RESEARCH TO SHARE 

3650
02:17:24,040 --> 02:17:24,600
WITH THE NATIONAL INSTITUTE 

3651
02:17:24,600 --> 02:17:29,480
ON AGING AND WE WANT AND WE 

3652
02:17:29,480 --> 02:17:30,560
HOPE FOR YOUR OWN IDEAS AND 

3653
02:17:30,560 --> 02:17:31,960
YOUR OWN APPLICATIONS ABOUT 

3654
02:17:31,960 --> 02:17:33,720
WHAT YOU CONSIDER TO BE THE 

3655
02:17:33,720 --> 02:17:34,280
MOST IMPORTANT RESEARCH TO 

3656
02:17:34,280 --> 02:17:36,040
MOVE THE FIELD FORWARD. 

3657
02:17:36,040 --> 02:17:36,880
AND YOU CAN APPLY UNDER BOTH 

3658
02:17:36,880 --> 02:17:40,880
THE PARENT RO1 AND THE NIDS R 

3659
02:17:40,880 --> 02:17:41,840
21. 

3660
02:17:41,840 --> 02:17:43,640
--- 

3661
02:17:43,640 --> 02:17:45,640
IN SUMMARY, I JUST WANT TO 

3662
02:17:45,640 --> 02:17:49,960
MENTION THAT I HOPE THAT YOU 

3663
02:17:49,960 --> 02:17:54,080
HAVE SEEN THE NINDS AD/ADRD 

3664
02:17:54,080 --> 02:17:56,160
SUMMIT HAS SET NATIONAL 

3665
02:17:56,160 --> 02:17:56,760
RESEARCH PRIORITIES AND WE 

3666
02:17:56,760 --> 02:18:01,760
HAD 70 FUNDING INITIATIVES. 

3667
02:18:01,760 --> 02:18:02,360
THE RESULTS WERE TO ESTABLISH 

3668
02:18:02,360 --> 02:18:07,560
A NEW MAJOR ADRD PROGRAMS AND 

3669
02:18:07,560 --> 02:18:13,920
CONSORTIA IN THE NINDS ADRD 

3670
02:18:13,920 --> 02:18:15,840
HAS GUIDED CONSERVATIVE 

3671
02:18:15,840 --> 02:18:16,400
RESEARCH AND CONTRIBUTED TO 

3672
02:18:16,400 --> 02:18:19,320
NEW ADVANCES HOPEFULLY TO THE 

3673
02:18:19,320 --> 02:18:19,760
DEVELOPMENT OF NEW 

3674
02:18:19,760 --> 02:18:20,240
INTERVENTIONS.

3675
02:18:20,240 --> 02:18:24,520
--- 

3676
02:18:24,520 --> 02:18:24,960
THERE ARE MANY PEOPLE 

3677
02:18:24,960 --> 02:18:25,560
INVOLVED IN THIS PROGRAM AND 

3678
02:18:25,560 --> 02:18:26,160
I WANT TO GIVE THANKS FOR THE 

3679
02:18:26,160 --> 02:18:26,720
TREMENDOUS EFFORTS OF NINDS 

3680
02:18:26,720 --> 02:18:30,360
AND NIA LEADERSHIP AND STAFF 

3681
02:18:30,360 --> 02:18:31,360
TODAY I WANT TO CALL OUT THE 

3682
02:18:31,360 --> 02:18:35,400
NINDS LEADS FOR THE ADRD 

3683
02:18:35,400 --> 02:18:37,360
SUMMIT SESSIONS LISTED HERE. 

3684
02:18:37,360 --> 02:18:41,240
FOR AFTER THE, TOM CHEEVER, 

3685
02:18:41,240 --> 02:18:42,480
FOR HEALTH EQUITY, RICHARD 

3686
02:18:42,480 --> 02:18:51,480
BENSON, FOR LBD, DEBRA 

3687
02:18:51,480 --> 02:18:57,280
BABCOCK, FOR MED-OVERALL -TBI 

3688
02:18:57,280 --> 02:19:02,760
AND -LATE, DOUBLE DUTY, LINDA 

3689
02:19:02,760 --> 02:19:08,880
MCGAVERN AND MED-CVOID-19, 

3690
02:19:08,880 --> 02:19:10,240
KEITH WHITAKER.

3691
02:19:10,240 --> 02:19:14,640
--- 

3692
02:19:14,640 --> 02:19:15,400
AND WITH THAT I WOULD LIKE TO 

3693
02:19:15,400 --> 02:19:20,640
WELCOME DR. NATALIA ROST WAS 

3694
02:19:20,640 --> 02:19:24,000
GOING TO DO THE ADA SUMMIT 

3695
02:19:24,000 --> 02:19:26,640
2022 REPORT TO THE NINDS 

3696
02:19:26,640 --> 02:19:28,280
COUNCIL. 

3697
02:19:28,280 --> 02:19:29,920
THANK YOU. 

3698
02:19:29,920 --> 02:19:37,640
>> THANK YOU ROD, AND
THANK 

3699
02:19:37,640 --> 02:19:38,120
YOU EVERYONE FOR THE 

3700
02:19:38,120 --> 02:19:39,760
OPPORTUNITY TO PARTICIPATE. 

3701
02:19:39,760 --> 02:19:41,960
LOOKING AT THOSE PICTURES 

3702
02:19:41,960 --> 02:19:46,680
REMINDS ME OF HOW MUCH OF A 

3703
02:19:46,680 --> 02:19:48,640
GREAT AND WE HAD AT THE 

3704
02:19:48,640 --> 02:19:52,920
SUMMIT, AND REALLY IT'S AN 

3705
02:19:52,920 --> 02:19:53,480
HONOR OF MY LIFE. FOR THOSE 

3706
02:19:53,480 --> 02:19:55,640
OF YOU WHO I HAVE NOT MET MY 

3707
02:19:55,640 --> 02:19:57,440
NAME IS NATALIA ROST, 

3708
02:19:57,440 --> 02:20:00,880
SCIENTIFIC CHAIR OF THE 2022 

3709
02:20:00,880 --> 02:20:03,440
ADRD SUMMIT. 

3710
02:20:03,440 --> 02:20:04,840
IT WAS A SIGNIFICANT 

3711
02:20:04,840 --> 02:20:06,720
UNDERTAKING BUT ALSO A GREAT 

3712
02:20:06,720 --> 02:20:10,320
OPPORTUNITY TO GET TO REALLY 

3713
02:20:10,320 --> 02:20:10,920
UNDERSTAND THE NUTS AND BOLTS 

3714
02:20:10,920 --> 02:20:12,680
OF THE PROCESS, AND THE 

3715
02:20:12,680 --> 02:20:14,560
TRANSPARENCY OF THE PROCESS 

3716
02:20:14,560 --> 02:20:18,520
BY WHICH THE PRIORITIES IN 

3717
02:20:18,520 --> 02:20:22,280
AD/ADRD RESEARCH ARE SET. IN 

3718
02:20:22,280 --> 02:20:22,840
ON BEHALF OF MY ENTIRE TEAM 

3719
02:20:22,840 --> 02:20:29,320
INCLUDING MY NINDS PARTNER 

3720
02:20:29,320 --> 02:20:32,760
DOCTOR CORVELL, (PHONETIC),

3721
02:20:32,760 --> 02:20:33,280
COMMITTEE CHAIRS AND OTHER 

3722
02:20:33,280 --> 02:20:33,880
MEMBERS IT IS MY GREAT HONOR 

3723
02:20:33,880 --> 02:20:38,800
TO PRESENT TO YOU THE ADRD 

3724
02:20:38,800 --> 02:20:41,160
SUMMIT 2022 REPORT.

3725
02:20:41,160 --> 02:20:42,880
--- 

3726
02:20:42,880 --> 02:20:43,440
THE GIST OF THE PRESENTATION 

3727
02:20:43,440 --> 02:20:47,520
IS THAT THE 22 ADRD SUMMIT 

3728
02:20:47,520 --> 02:20:50,720
WAS A GREAT SUCCESS AND AS 

3729
02:20:50,720 --> 02:20:53,240
YOU KNOW IT WAS THE FIRST 

3730
02:20:53,240 --> 02:20:53,840
VIRTUAL SUMMIT HELD THROUGH 

3731
02:20:53,840 --> 02:20:54,520
VIDEOCONFERENCING DUE TO THE 

3732
02:20:54,520 --> 02:20:58,280
LINGERING EFFECTS OF THE 

3733
02:20:58,280 --> 02:20:58,880
CVOID-19 PANDEMIC BUT DESPITE 

3734
02:20:58,880 --> 02:20:59,480
THE CHALLENGES WE MANAGED TO 

3735
02:20:59,480 --> 02:21:01,240
GET THE PROGRAM UP AND READY 

3736
02:21:01,240 --> 02:21:06,440
FOR PRESENTATION TWO DAYS OF 

3737
02:21:06,440 --> 02:21:11,800
THE SUMMIT MARCH 22 AND 23. 

3738
02:21:11,800 --> 02:21:16,520
AND IT WAS A GREAT 

3739
02:21:16,520 --> 02:21:17,000
ORGANIZATION,  STRIVING 

3740
02:21:17,000 --> 02:21:17,560
TOWARDS GETTING EVERYTHING 

3741
02:21:17,560 --> 02:21:18,160
READY AND WE WERE EXCITED TO 

3742
02:21:18,160 --> 02:21:20,120
KNOW THAT THERE WAS A BROAD 

3743
02:21:20,120 --> 02:21:20,720
STAKEHOLDER ENGAGEMENT ALONG 

3744
02:21:20,720 --> 02:21:23,560
THE WAY. WE HAD MORE THAN 

3745
02:21:23,560 --> 02:21:25,520
1500 REGISTERED ATTENDEES AND 

3746
02:21:25,520 --> 02:21:26,520
DURING THE SUMMIT WE HAD 

3747
02:21:26,520 --> 02:21:32,760
ANYWHERE BETWEEN 400-700 

3748
02:21:32,760 --> 02:21:34,400
ATTENDEES PARTICIPATING 

3749
02:21:34,400 --> 02:21:35,600
DURING MOST SESSIONS. WE HAD 

3750
02:21:35,600 --> 02:21:37,040
A VERY BROAD ENGAGEMENT 

3751
02:21:37,040 --> 02:21:42,400
ACROSS THE ACADEMIC CLINICAL 

3752
02:21:42,400 --> 02:21:42,880
GOVERNMENT, INDUSTRY, 

3753
02:21:42,880 --> 02:21:44,840
NONPROFIT AND PUBLIC SECTORS 

3754
02:21:44,840 --> 02:21:45,440
INVOLVED  IN THE TWO DAYS OF 

3755
02:21:45,440 --> 02:21:46,360
PROBLEMS WE HAD8 SCIENTIFIC 

3756
02:21:46,360 --> 02:21:51,520
SESSIONS WITH 128 PANEL IS 

3757
02:21:51,520 --> 02:21:51,960
PARTICIPATING AND 44 

3758
02:21:51,960 --> 02:21:52,720
INDIVIDUAL TALKS AND I AM 

3759
02:21:52,720 --> 02:21:53,360
PARTICULARLY PROUD TO LET YOU 

3760
02:21:53,360 --> 02:21:55,440
KNOW THAT WE HAD 210 MINUTES 

3761
02:21:55,440 --> 02:21:59,400
OF OPEN MIC DISCUSSION SETS 

3762
02:21:59,400 --> 02:22:00,160
WHICH WERE ALL VERY ROBUSTLY 

3763
02:22:00,160 --> 02:22:04,200
USED UP. 

3764
02:22:04,200 --> 02:22:05,200
IT WAS A TREMENDOUS 

3765
02:22:05,200 --> 02:22:06,400
CONTRIBUTION TO THE CONTENT 

3766
02:22:06,400 --> 02:22:08,840
OF THE RECOMMENDATIONS AND 

3767
02:22:08,840 --> 02:22:10,960
REALLY FOSTERING ROBUST 

3768
02:22:10,960 --> 02:22:12,920
DIALOGUE BETWEEN THE 

3769
02:22:12,920 --> 02:22:13,480
SCIENTISTS IN PUBLIC AND 

3770
02:22:13,480 --> 02:22:14,040
OTHER STAKEHOLDERS.

3771
02:22:14,040 --> 02:22:14,760
--- 

3772
02:22:14,760 --> 02:22:20,360
WE ALSO-- WHICH IS A NEW AND 

3773
02:22:20,360 --> 02:22:24,240
I THINK A VERY POSITIVE 

3774
02:22:24,240 --> 02:22:24,840
DEVELOPMENT-- WE HAD A STRONG 

3775
02:22:24,840 --> 02:22:26,360
VOICE OF PATIENTS AND 

3776
02:22:26,360 --> 02:22:26,920
CAREGIVERS IN THE SUMMIT 

3777
02:22:26,920 --> 02:22:27,520
ABOVE AND BEYOND WHAT HAS 

3778
02:22:27,520 --> 02:22:28,120
BEEN DONE BEFORE PARTICULARLY 

3779
02:22:28,120 --> 02:22:28,960
THROUGH THE CONTRIBUTION OF 

3780
02:22:28,960 --> 02:22:30,840
THE OFFICE OF COMMUNICATIONS 

3781
02:22:30,840 --> 02:22:34,280
AT NINDS WHICH I AM GRATEFUL 

3782
02:22:34,280 --> 02:22:36,040
TO FOR CREATING THE VOICES OF 

3783
02:22:36,040 --> 02:22:44,440
THE ADRD TESTIMONIALS, AND 

3784
02:22:44,440 --> 02:22:45,000
THE INPUT FROM THE PATIENTS 

3785
02:22:45,000 --> 02:22:45,600
DURING THE SUMMER WHICH WAS A 

3786
02:22:45,600 --> 02:22:47,360
GREAT CONVERSATION LEAD THEY 

3787
02:22:47,360 --> 02:22:49,480
PROVIDED. 

3788
02:22:49,480 --> 02:22:50,480
I ALSO ENCOURAGE YOU TO 

3789
02:22:50,480 --> 02:22:54,280
REVIEW THE RECORDINGS AT YOUR 

3790
02:22:54,280 --> 02:23:00,880
LEISURE, AT THE 

3791
02:23:00,880 --> 02:23:03,840
VIDEOCAST.NIH.GOV WEBSITE. 

3792
02:23:03,840 --> 02:23:04,960
WITH COVERED A BROAD ROUND 

3793
02:23:04,960 --> 02:23:10,400
WITHIN THE ADRD COVERING 

3794
02:23:10,400 --> 02:23:11,000
TRADITIONAL TOPICS OF HEALTH 

3795
02:23:11,000 --> 02:23:18,040
EQUITY AND ADRD FROM 

3796
02:23:18,040 --> 02:23:18,560
DISTEMPORAL SITUATIONS AS 

3797
02:23:18,560 --> 02:23:20,000
WELL AS OTHER THINGS THAT ROD 

3798
02:23:20,000 --> 02:23:24,400
OUTLINED. 

3799
02:23:24,400 --> 02:23:25,400
THE TOPIC INCLUDES THE 

3800
02:23:25,400 --> 02:23:26,400
PRIVATE SPECIAL TOPICS WITHIN 

3801
02:23:26,400 --> 02:23:36,920
NIND PLUS TDI AND -- AND TDP 

3802
02:23:42,000 --> 02:23:42,480
PATHOLOGIES AS WELL AS THE 

3803
02:23:42,480 --> 02:23:43,040
NEW EMERGENT SESSIONS ON 

3804
02:23:43,040 --> 02:23:43,880
CVOID-19. 

3805
02:23:43,880 --> 02:23:47,360
--- 

3806
02:23:47,360 --> 02:23:47,920
I WOULD LIKE TO BEGIN WITH A 

3807
02:23:47,920 --> 02:23:50,400
BIT OF A GLOBAL VIEW OF WHY 

3808
02:23:50,400 --> 02:23:52,600
OUR WORK HERE IS SO 

3809
02:23:52,600 --> 02:23:53,080
IMPORTANT, AND REMIND 

3810
02:23:53,080 --> 02:23:57,360
EVERYBODY THAT DESPITE THE 

3811
02:23:57,360 --> 02:23:57,880
RECENT ADVANCES THERE IS 

3812
02:23:57,880 --> 02:24:00,360
CERTAINLY MUCH MORE TO BE 

3813
02:24:00,360 --> 02:24:03,040
DONE. I FIND THIS RECENT MAP 

3814
02:24:03,040 --> 02:24:03,520
GENERATED BY THE GLOBAL 

3815
02:24:03,520 --> 02:24:08,760
BURDEN OF DISEASE 

3816
02:24:08,760 --> 02:24:09,360
COLLABORATIVE, AND ESTIMATED 

3817
02:24:09,360 --> 02:24:09,800
PERCENTAGE CHANGE OF 

3818
02:24:09,800 --> 02:24:11,160
ESTIMATED DEMENTIA IN THE 

3819
02:24:11,160 --> 02:24:11,760
WORLD, SHOWING THAT IT IS AN 

3820
02:24:11,760 --> 02:24:14,200
ONGOING CHALLENGE EVEN SOME 

3821
02:24:14,200 --> 02:24:18,560
REPORT SHOWING FLATTENING  OF 

3822
02:24:18,560 --> 02:24:19,120
DEMENTIA INCIDENTS WE KNOW 

3823
02:24:19,120 --> 02:24:19,600
THAT IT IS UNIFORMLY 

3824
02:24:19,600 --> 02:24:21,040
PROJECTED THAT THE GROWTH IN 

3825
02:24:21,040 --> 02:24:22,240
PREVALENCE OF DEMENTIA CASES 

3826
02:24:22,240 --> 02:24:26,040
BETWEEN 2019 AND 2025 IS 

3827
02:24:26,040 --> 02:24:28,480
EXPECTED AROUND THE WORLD AND 

3828
02:24:28,480 --> 02:24:29,240
SOME OF THE SMALLEST 

3829
02:24:29,240 --> 02:24:32,080
ESTIMATES VARY BETWEEN 20-40% 

3830
02:24:32,080 --> 02:24:35,080
AND THE LARGEST ONES UP TO 

3831
02:24:35,080 --> 02:24:35,720
2000% FOR THE US PROJECTED TO 

3832
02:24:35,720 --> 02:24:43,880
BE IN THE 80-100% INCREASE BY 

3833
02:24:43,880 --> 02:24:44,320
2050, THIS IS VERY 

3834
02:24:44,320 --> 02:24:46,600
SIGNIFICANT AND DESPITE THE 

3835
02:24:46,600 --> 02:24:47,720
NEED FOR GLOBAL VIGILANCE AS 

3836
02:24:47,720 --> 02:24:56,960
CLINICIAN SCIENTISTS MY FOCUS 

3837
02:24:56,960 --> 02:24:57,560
PERSONALLY-- AND I KNOW THIS 

3838
02:24:57,560 --> 02:24:58,160
IS THE FOCUS OF THE DEMENTIA 

3839
02:24:58,160 --> 02:24:58,720
SCIENCE --IS TO REALLY STAY 

3840
02:24:58,720 --> 02:24:59,880
ON THE NEEDS AND DEVELOPMENT 

3841
02:24:59,880 --> 02:25:02,520
OF THE INDIVIDUAL PATIENT'S 

3842
02:25:02,520 --> 02:25:04,280
DISEASE COURSE AND THE 

3843
02:25:04,280 --> 02:25:06,280
DEMENTIA SCIENCE PARADIGM, 

3844
02:25:06,280 --> 02:25:10,680
WHERE THE SCIENCE GOES FROM 

3845
02:25:10,680 --> 02:25:11,280
BEDSIDE TO BENCH AND BACK TO 

3846
02:25:11,280 --> 02:25:11,880
BEDSIDE WAS ESSENTIAL FOR THE 

3847
02:25:11,880 --> 02:25:17,000
PREPARATION FOR THE ADRD 2022 

3848
02:25:17,000 --> 02:25:17,600
SUMMIT AND A SCIENTIFIC SHARE 

3849
02:25:17,600 --> 02:25:20,920
ON NATURE TO EMPHASIZE THE 

3850
02:25:20,920 --> 02:25:22,400
DEPERSONALIZATION AND 

3851
02:25:22,400 --> 02:25:24,360
DIAGNOSTICS INTERVENTION, 

3852
02:25:24,360 --> 02:25:28,520
DIAGNOSTICS, CARE ARE THE 

3853
02:25:28,520 --> 02:25:30,680
ULTIMATE GOALS TO MAKE THE 

3854
02:25:30,680 --> 02:25:33,480
RELEVANT AND AS YOU KNOW, AND 

3855
02:25:33,480 --> 02:25:37,960
AS DOCTOR CORRIVEAU INDICATED 

3856
02:25:37,960 --> 02:25:40,600
THIS TASK REMAINS TO BE 

3857
02:25:40,600 --> 02:25:41,240
COMPLEX. THERE HAS BEEN A 

3858
02:25:41,240 --> 02:25:44,200
FASCINATED EVOLUTION OF 

3859
02:25:44,200 --> 02:25:46,360
DEMENTIA AS A CLINICAL 

3860
02:25:46,360 --> 02:25:46,960
SYNDROME CONCEPT AS YOU HAVE 

3861
02:25:46,960 --> 02:25:47,520
ALREADY HEARD, ESPECIALLY 

3862
02:25:47,520 --> 02:25:50,080
OVER THE PAST FEW DECADES. 

3863
02:25:50,080 --> 02:25:50,640
WITH ACCUMULATING KNOWLEDGE 

3864
02:25:50,640 --> 02:25:51,960
OF ABOUT UNDERLINING DISEASE 

3865
02:25:51,960 --> 02:25:58,640
PATHOLOGY AND VARIABILITY OF 

3866
02:25:58,640 --> 02:26:00,920
CLINICAL FEATURES, 

3867
02:26:00,920 --> 02:26:03,960
MOLECULAR GENETICS THAT MAKES 

3868
02:26:03,960 --> 02:26:04,880
THIS SHIFT WHILE THE SIZE 

3869
02:26:04,880 --> 02:26:05,440
CONTINUES TO EVOLVE PRIOR 

3870
02:26:05,440 --> 02:26:13,720
GOVERNMENTS LIKE 

3871
02:26:13,720 --> 02:26:14,360
1PATHOLOGY=1DISEASE IS 

3872
02:26:14,360 --> 02:26:15,720
RAPIDLY CHANGING AND THERE 

3873
02:26:15,720 --> 02:26:16,400
ARE MULTIPLE PATHWAYS TO 

3874
02:26:16,400 --> 02:26:17,120
CLINICAL DEMENTIA SYNDROME.

3875
02:26:17,120 --> 02:26:18,920
--- 

3876
02:26:18,920 --> 02:26:19,440
FURTHERMORE WE UNDERSTAND 

3877
02:26:19,440 --> 02:26:21,360
THAT ON THE WHITE SPECTRUM 

3878
02:26:21,360 --> 02:26:21,960
BETWEEN  BRAIN HEALTH AND ONE 

3879
02:26:21,960 --> 02:26:22,560
AND IN THE RAIN DISEASE SUCH 

3880
02:26:22,560 --> 02:26:26,200
AS ADRD AND THE OTHER, THERE 

3881
02:26:26,200 --> 02:26:28,640
IS LITERALLY A LIFETIME WHERE 

3882
02:26:28,640 --> 02:26:29,240
EVERY STAGE OF OUR INDIVIDUAL 

3883
02:26:29,240 --> 02:26:32,040
CHRONOLOGICAL LIFESPAN, 

3884
02:26:32,040 --> 02:26:33,960
INCLUDING THE INFLUENCES THAT 

3885
02:26:33,960 --> 02:26:34,520
OCCUR DURING EMBRYOLOGICAL 

3886
02:26:34,520 --> 02:26:39,040
BRAIN DEVELOPMENT THERE ARE 

3887
02:26:39,040 --> 02:26:39,560
INNATE AND ENVIRONMENTAL 

3888
02:26:39,560 --> 02:26:42,240
FACTORS THAT IMPACTED RISK OF 

3889
02:26:42,240 --> 02:26:42,760
DEVELOPING DEMENTIA AT A 

3890
02:26:42,760 --> 02:26:44,480
LATER AGE.

3891
02:26:44,480 --> 02:26:45,080
AND MOST OF THESE LIFESTAGES 

3892
02:26:45,080 --> 02:26:46,440
ARE ARBITRARY OBVIOUSLY IN 

3893
02:26:46,440 --> 02:26:52,920
MANY FACTORS  CONTRIBUTE TO 

3894
02:26:52,920 --> 02:26:53,480
THE INFLUENCE OF THE LIFE 

3895
02:26:53,480 --> 02:26:54,040
COURSE INCLUDING THOSE THAT 

3896
02:26:54,040 --> 02:26:54,640
HAVE CUMULATIVE EFFECTS SUCH 

3897
02:26:54,640 --> 02:26:55,240
AS HEALTH DISPARITIES RELATED 

3898
02:26:55,240 --> 02:26:55,840
TO HISTORICAL SOCIETAL 

3899
02:26:55,840 --> 02:26:56,280
STRUCTURES.

3900
02:26:56,280 --> 02:26:58,680
--- 

3901
02:26:58,680 --> 02:26:59,240
SO UNSURPRISINGLY TO OVERCOME 

3902
02:26:59,240 --> 02:27:04,040
THE COMPLEXITIES OF THE ADRD 

3903
02:27:04,040 --> 02:27:04,640
DISEASE PROCESS OUR SIGNS HAS 

3904
02:27:04,640 --> 02:27:06,440
TO REMAIN DYNAMIC, ROBUST AND 

3905
02:27:06,440 --> 02:27:09,040
INFORMED BY PATIENT 

3906
02:27:09,040 --> 02:27:10,600
EXPERIENCES AND STAYING ON 

3907
02:27:10,600 --> 02:27:14,720
MISSION TO BRING TOGETHER 

3908
02:27:14,720 --> 02:27:15,280
EXPERTISE,  CROSSCUTTING 

3909
02:27:15,280 --> 02:27:16,600
SCIENCE AND A PERPETUAL CYCLE 

3910
02:27:16,600 --> 02:27:18,320
OF INNOVATION, COLLABORATION, 

3911
02:27:18,320 --> 02:27:18,880
COMMUNICATION AND RESEARCH 

3912
02:27:18,880 --> 02:27:21,960
AND THAT IS WHAT THE 2022 

3913
02:27:21,960 --> 02:27:22,680
ADRD SUMMIT WAS ALL ABOUT.

3914
02:27:22,680 --> 02:27:27,720
--- 

3915
02:27:27,720 --> 02:27:28,160
BEFORE I SOON ON EVERY 

3916
02:27:28,160 --> 02:27:28,760
INDIVIDUAL RECOMMENDATION I 

3917
02:27:28,760 --> 02:27:31,120
WANT TO HIGHLIGHT SOME OF THE 

3918
02:27:31,120 --> 02:27:31,720
OVERARCHING SESSION SPECIFICS 

3919
02:27:31,720 --> 02:27:35,200
AND CROSSCUTTING THEMES.  

3920
02:27:35,200 --> 02:27:35,800
SOME MONETIZATION HIGHLIGHTS 

3921
02:27:35,800 --> 02:27:36,880
I WANTED TO BRING TO YOUR 

3922
02:27:36,880 --> 02:27:38,120
ATTENTION OUR HEALTH EQUITY 

3923
02:27:38,120 --> 02:27:41,040
AND ADRD WAS A CENTRAL 

3924
02:27:41,040 --> 02:27:42,600
DISCUSSION.

3925
02:27:42,600 --> 02:27:45,600
AND THE CONCEPT OF INCLUSION 

3926
02:27:45,600 --> 02:27:46,120
SCIENCE,  WITH INCLUSION 

3927
02:27:46,120 --> 02:27:48,360
BROADLY INVOLVING STUDY 

3928
02:27:48,360 --> 02:27:48,960
PARTICIPANTS, WORKFORCE THAT 

3929
02:27:48,960 --> 02:27:50,880
PARTICIPATE IN RESEARCH, 

3930
02:27:50,880 --> 02:27:52,200
COMMUNITIES AND ALSO SOCIETY 

3931
02:27:52,200 --> 02:27:54,480
HAS BEEN FRONT AND CENTER. 

3932
02:27:54,480 --> 02:27:59,320
WITH FTD  THEY HAVE BEEN 

3933
02:27:59,320 --> 02:27:59,960
QUITE A FEW CRITICAL ADVANCES 

3934
02:27:59,960 --> 02:28:06,520
IN BIOMARKERS  DEVELOPMENTS 

3935
02:28:06,520 --> 02:28:07,040
AS WELL AS TRANSLATION TO 

3936
02:28:07,040 --> 02:28:07,640
CLINICAL TRIALS AND ATTEMPTS 

3937
02:28:07,640 --> 02:28:08,280
TO ADDRESS THE BROAD SPECTRUM 

3938
02:28:08,280 --> 02:28:08,840
OF THE DISEASE HAS BEEN ONE 

3939
02:28:08,840 --> 02:28:09,440
OF THE  LEADING ONCE ACROSS 

3940
02:28:09,440 --> 02:28:12,280
THE BOARD AND WITHIN VCID, 

3941
02:28:12,280 --> 02:28:13,480
BIOMARKERS TO UNRAVEL COMPLEX 

3942
02:28:13,480 --> 02:28:14,000
PHENOTYPES ARE TAKING 

3943
02:28:14,000 --> 02:28:20,680
PRIORITIES AND  CENTRAL 

3944
02:28:20,680 --> 02:28:22,480
STATES AS WELL AS THE 

3945
02:28:22,480 --> 02:28:22,960
DEVELOPMENT OF NOVEL 

3946
02:28:22,960 --> 02:28:23,480
DEPARTMENTAL MODELS AND 

3947
02:28:23,480 --> 02:28:24,000
TRANSLATION OF THE BASIC 

3948
02:28:24,000 --> 02:28:24,480
RESEARCH FINDINGS INTO 

3949
02:28:24,480 --> 02:28:25,040
CLINICAL SCIENCE. 

3950
02:28:25,040 --> 02:28:26,080
--- 

3951
02:28:26,080 --> 02:28:29,880
IN LBD THE CENTRAL EFFORTS 

3952
02:28:29,880 --> 02:28:32,880
ARE AROUND CLINICAL 

3953
02:28:32,880 --> 02:28:34,160
CHARACTERIZATION AND 

3954
02:28:34,160 --> 02:28:34,640
INTERVENTION AS WELL AS 

3955
02:28:34,640 --> 02:28:35,200
PATHOGENESIS AND MECHANISMS 

3956
02:28:35,200 --> 02:28:39,440
OF TOXICITY. AND MED AGAIN 

3957
02:28:39,440 --> 02:28:41,400
BEING ONE OF THE BROADEST 

3958
02:28:41,400 --> 02:28:42,400
CATEGORIES, MANAGED TO STAY 

3959
02:28:42,400 --> 02:28:47,600
QUIET FOCUS ON DETECTION   

3960
02:28:47,600 --> 02:28:48,200
AND DIAGNOSIS, INTERVENTIONS 

3961
02:28:48,200 --> 02:28:49,360
AND TREATMENTS, AS WELL AS 

3962
02:28:49,360 --> 02:28:49,840
DATA HARMONIZATION AND 

3963
02:28:49,840 --> 02:28:50,600
DEMENTIA CAPABLE WORKFORCE. 

3964
02:28:50,600 --> 02:28:55,680
AND WITHIN THE MED SPECIAL 

3965
02:28:55,680 --> 02:29:01,120
SUBTOPICS, POST-TBI AD/ADRD, 

3966
02:29:01,120 --> 02:29:03,840
COLLABORATION,  HARMONIZATION 

3967
02:29:03,840 --> 02:29:04,160
AND PHENOTYPE 

3968
02:29:04,160 --> 02:29:05,320
CHARACTERIZATION OF SOME OF 

3969
02:29:05,320 --> 02:29:15,200
THE CENTRAL PRIORITIES. 

3970
02:29:15,200 --> 02:29:15,760
TDP-43 IN COMMON AND LATE 

3971
02:29:15,760 --> 02:29:18,400
ONSET DEMENTIAS IS WORKING ON 

3972
02:29:18,400 --> 02:29:21,240
DEFINITION,  2 LANDMARKS AND 

3973
02:29:21,240 --> 02:29:21,800
DISEASE MODELS AND THE022 

3974
02:29:21,800 --> 02:29:22,320
EMERGING SCIENCE PROBABLY 

3975
02:29:22,320 --> 02:29:23,280
REVIEWED THE IMPACT OF 

3976
02:29:23,280 --> 02:29:25,760
CVOID-19 AND AD/ADRD RISK AND 

3977
02:29:25,760 --> 02:29:26,520
OUTCOMES. 

3978
02:29:26,520 --> 02:29:32,240
--- 

3979
02:29:32,240 --> 02:29:32,680
SO DESPITE EACH SESSION 

3980
02:29:32,680 --> 02:29:34,000
HAVING THEIR OWN PRIORITIES 

3981
02:29:34,000 --> 02:29:34,560
AND OWN CENTRAL THEMES, THE 

3982
02:29:34,560 --> 02:29:37,240
CROSSCUTTING THEME IS WHAT 

3983
02:29:37,240 --> 02:29:45,760
PUT THE OVERARCHING GOAL OF 

3984
02:29:45,760 --> 02:29:46,560
THE ADRD SUMMIT IN 2022 

3985
02:29:46,560 --> 02:29:50,360
TOGETHER. 

3986
02:29:50,360 --> 02:29:50,880
 SOME OF THE CROSSCUTTING 

3987
02:29:50,880 --> 02:29:51,600
THEMES I WANTED TO HIDE IT I 

3988
02:29:51,600 --> 02:29:56,160
REALLY THE HEALTH EQUITY IN 

3989
02:29:56,160 --> 02:29:56,760
AD/ADRD AS A MAJOR IMPERATIVE 

3990
02:29:56,760 --> 02:29:58,040
AND THE CONTINUING UNMET NEED 

3991
02:29:58,040 --> 02:30:02,280
IN RESEARCH. 

3992
02:30:02,280 --> 02:30:02,800
 THE NEED FOR RESEARCH AND 

3993
02:30:02,800 --> 02:30:03,360
IMPLEMENTATION OF PRAGMATIC 

3994
02:30:03,360 --> 02:30:06,040
APPROACHES AND SOLUTIONS IN 

3995
02:30:06,040 --> 02:30:06,640
AD/ADRD, INCLUDING PRAGMATIC 

3996
02:30:06,640 --> 02:30:10,840
CLINICAL TRIAL DESIGNS.

3997
02:30:10,840 --> 02:30:11,400
 THE URGENT NEED FOR PRECISE 

3998
02:30:11,400 --> 02:30:11,920
BIOMARKERS ACROSS EVERY 

3999
02:30:11,920 --> 02:30:14,240
DISEASE CATEGORY WITHIN 

4000
02:30:14,240 --> 02:30:16,160
AD/ADRD TO IDENTIFY 

4001
02:30:16,160 --> 02:30:18,320
UNDERLINING DISEASE PROCESSES.

4002
02:30:18,320 --> 02:30:21,840
HELPING INDIVIDUALS OR THOSE 

4003
02:30:21,840 --> 02:30:23,640
WHO  ARE DIAGNOSED WITH 

4004
02:30:23,640 --> 02:30:34,080
EITHER ADRD OR QUADROMAL 

4005
02:30:38,880 --> 02:30:40,560
(CORRECTION) PRODROMAL 

4006
02:30:40,560 --> 02:30:43,640
SYNDROMES.

4007
02:30:43,640 --> 02:30:45,240
INNOVATIVE APPROACHES TO 

4008
02:30:45,240 --> 02:30:45,800
PERSONAL PREVENTION.

4009
02:30:45,800 --> 02:30:48,320
IN CLINICAL RESEARCH, 

4010
02:30:48,320 --> 02:30:52,120
PREVENTION, PRESYMPTOMATIC 

4011
02:30:52,120 --> 02:30:53,360
VIGILANCE,  AND IN BASIC 

4012
02:30:53,360 --> 02:30:53,960
RESEARCH NEEDS INCLUDE NOVEL 

4013
02:30:53,960 --> 02:30:54,720
STRATEGIES AND TOOLS IN 

4014
02:30:54,720 --> 02:30:57,280
SEEKING SYNERGIES MAXIMIZING 

4015
02:30:57,280 --> 02:30:57,800
THE DIVERGENCE INDICES 

4016
02:30:57,800 --> 02:30:58,800
PATHWAYS IN ORDER TO PROCEED 

4017
02:30:58,800 --> 02:30:59,600
TO FUTURE ADVANCES.

4018
02:30:59,600 --> 02:31:04,320
--- 

4019
02:31:04,320 --> 02:31:05,920
SO I WILL NOW SPEND A FEW  

4020
02:31:05,920 --> 02:31:06,440
MINUTES HIGHLIGHTING TOP 

4021
02:31:06,440 --> 02:31:06,840
PRIORITIES AND 

4022
02:31:06,840 --> 02:31:08,480
RECOMMENDATIONS BY EACH 

4023
02:31:08,480 --> 02:31:09,080
INDIVIDUAL SCIENTIFIC WORKING 

4024
02:31:09,080 --> 02:31:09,640
GROUP AND I WILL START WITH 

4025
02:31:09,640 --> 02:31:14,560
THE HEALTH EQUITY IN ADRD AND 

4026
02:31:14,560 --> 02:31:15,160
PROCEEDING THE ORDER IN WHICH 

4027
02:31:15,160 --> 02:31:15,720
THE RECOMMENDATIONS WERE 

4028
02:31:15,720 --> 02:31:16,120
PRESENTED. 

4029
02:31:16,120 --> 02:31:23,240
--- 

4030
02:31:23,240 --> 02:31:23,720
AS YOU KNOW AND I HAVE 

4031
02:31:23,720 --> 02:31:24,320
ALREADY MENTIONED TO YOU THE 

4032
02:31:24,320 --> 02:31:24,880
HEALTH EQUITY WORKING GROUP 

4033
02:31:24,880 --> 02:31:25,480
HAS PRESENTED A CLEAR VISION 

4034
02:31:25,480 --> 02:31:31,080
FOR ACHIEVING AD/ADRD HEALTH 

4035
02:31:31,080 --> 02:31:31,680
EQUITY  THROUGH RESEARCH WITH 

4036
02:31:31,680 --> 02:31:32,280
A CENTRAL FOCUS ON DIVERSITY 

4037
02:31:32,280 --> 02:31:32,760
IN THE WORKFORCE AND 

4038
02:31:32,760 --> 02:31:33,480
INCLUSION SCIENCE FRAMEWORK. 

4039
02:31:33,480 --> 02:31:34,040
THE TOP PRIORITIES PRESENTED 

4040
02:31:34,040 --> 02:31:35,400
BY THE WORKGROUP LED BY 

4041
02:31:35,400 --> 02:31:42,640
DOCTOR GONZALEZ AND 

4042
02:31:42,640 --> 02:31:46,520
ZISSIMOPOULOS CENTERED ON 

4043
02:31:46,520 --> 02:31:47,000
ADVANCING  EQUITY AND 

4044
02:31:47,000 --> 02:31:47,520
INCLUSION OF SCIENCE TO 

4045
02:31:47,520 --> 02:31:48,000
IMPROVE REPRESENTATION 

4046
02:31:48,000 --> 02:31:50,200
SAMPLING AND  INCREASE 

4047
02:31:50,200 --> 02:31:50,720
TRAINING AND SUPPORT AND 

4048
02:31:50,720 --> 02:31:55,840
CAPACITY OF AN AD/ADRD  

4049
02:31:55,840 --> 02:31:56,360
SCIENTIFIC WORKFORCE OF 

4050
02:31:56,360 --> 02:31:56,800
PERSONS HISTORICALLY 

4051
02:31:56,800 --> 02:31:57,960
UNDERREPRESENTED IN 

4052
02:31:57,960 --> 02:31:58,560
BIOMEDICAL, BEHAVIORAL AND 

4053
02:31:58,560 --> 02:31:59,040
SOCIAL SCIENCES.

4054
02:31:59,040 --> 02:32:02,600
--- 

4055
02:32:02,600 --> 02:32:05,200
THE FRONTOTEMPORAL DEMENTIA 

4056
02:32:05,200 --> 02:32:06,040
AS A FIELD HAS EXPERIENCED 

4057
02:32:06,040 --> 02:32:06,760
RAPID ADVANCEMENT OVER THE 

4058
02:32:06,760 --> 02:32:08,880
PAST FEW YEARS. THIS 

4059
02:32:08,880 --> 02:32:10,400
INVESTMENT HAS BEEN LARGELY 

4060
02:32:10,400 --> 02:32:13,840
FUELED BY THE  LARGE-SCALE 

4061
02:32:13,840 --> 02:32:14,600
NATIONAL AND INTERNATIONAL 

4062
02:32:14,600 --> 02:32:18,120
COLLABORATION SUCH AS OFTD 

4063
02:32:18,120 --> 02:32:27,640
AND THE FTD PREVENTION 

4064
02:32:27,640 --> 02:32:28,120
INITIATIVE LEADING TO 

4065
02:32:28,120 --> 02:32:28,640
BIOMARKER DEVELOPMENT AND 

4066
02:32:28,640 --> 02:32:30,000
SOME OF THE CLINICAL TRIALS 

4067
02:32:30,000 --> 02:32:31,920
IN FTD.

4068
02:32:31,920 --> 02:32:34,680
AND THE WORKING GROUP LED BY 

4069
02:32:34,680 --> 02:32:39,560
DOCTORS BOXER AND KARCH  

4070
02:32:39,560 --> 02:32:45,000
FOCUS ON UNDERSTANDING FTD 

4071
02:32:45,000 --> 02:32:48,200
EPIDEMIOLOGY AND GENETICS IN 

4072
02:32:48,200 --> 02:32:48,800
DIVERSE POPULATIONS INCLUDING 

4073
02:32:48,800 --> 02:32:52,440
HOW SOCIOECONOMIC  AND 

4074
02:32:52,440 --> 02:32:53,000
ETHNOCULTURAL STATUS AFFECT 

4075
02:32:53,000 --> 02:32:53,720
DISEASE RISK AND 

4076
02:32:53,720 --> 02:32:54,440
MANIFESTATIONS AS WELL AS IN 

4077
02:32:54,440 --> 02:32:58,880
ADVANCING UNDERSTANDING OF 

4078
02:32:58,880 --> 02:32:59,480
FTD AND IDENTIFY THERAPEUTIC 

4079
02:32:59,480 --> 02:32:59,840
TARGETS.

4080
02:32:59,840 --> 02:33:03,320
--- 

4081
02:33:03,320 --> 02:33:03,880
VCID IS AN X WORKING GROUP I 

4082
02:33:03,880 --> 02:33:09,720
WOULD LIKE TO HIGHLIGHT. VCID 

4083
02:33:09,720 --> 02:33:13,160
IS ONE OF THE MOST RECOGNIZED 

4084
02:33:13,160 --> 02:33:13,760
AND PREVENTIVE FORMS OF BRAIN 

4085
02:33:13,760 --> 02:33:14,320
DISEASE ARE MORE OFTEN THAN 

4086
02:33:14,320 --> 02:33:14,880
NOT IN THE POPULATION THAT 

4087
02:33:14,880 --> 02:33:19,360
ARE CONSIDERED TO BE 

4088
02:33:19,360 --> 02:33:19,880
"DISEASE-FREE," ONTO THE 

4089
02:33:19,880 --> 02:33:20,480
CRITICAL BURDEN OF DISEASE 

4090
02:33:20,480 --> 02:33:20,880
CIRCULATION LEADS A 

4091
02:33:20,880 --> 02:33:23,880
RELENTLESS COGNITIVE DECLINE. 

4092
02:33:23,880 --> 02:33:25,200
DESPITE THE HETEROGENEITY AND 

4093
02:33:25,200 --> 02:33:30,240
PATHOLOGICAL CHARACTERISTICS, 

4094
02:33:30,240 --> 02:33:30,720
VCID IS ALSO THE MOST 

4095
02:33:30,720 --> 02:33:31,320
PREVENTABLE FORM OF DEMENTIA 

4096
02:33:31,320 --> 02:33:31,920
AT LEAST AT THIS TIME AND 

4097
02:33:31,920 --> 02:33:35,160
AGE. 

4098
02:33:35,160 --> 02:33:38,520
AND THE DEMENTIA CAN BE 

4099
02:33:38,520 --> 02:33:43,000
ATTACKED VIA MULTIPLE  

4100
02:33:43,000 --> 02:33:43,600
MECHANISMS THAT OVERALL HAVE 

4101
02:33:43,600 --> 02:33:44,200
A POSITIVE MULTISYSTEM EFFECT 

4102
02:33:44,200 --> 02:33:44,800
INCLUDING THE CARDIOVASCULAR 

4103
02:33:44,800 --> 02:33:50,040
AND BRAIN HEALTH. THE VCID  

4104
02:33:50,040 --> 02:33:51,120
WORKING GROUP COCHAIRED BY 

4105
02:33:51,120 --> 02:34:01,640
DOCTORS WOLCOCK AND PETERSEN 

4106
02:34:02,920 --> 02:34:03,400
FOCUS ON ESTABLISHING AND 

4107
02:34:03,400 --> 02:34:04,000
REFINING EXPERIMENTAL MODELS 

4108
02:34:04,000 --> 02:34:04,600
AND TECHNOLOGIES TO IDENTIFY 

4109
02:34:04,600 --> 02:34:05,160
DISEASE RELEVANT MECHANISMS 

4110
02:34:05,160 --> 02:34:08,240
UNDERLYING VCID. 

4111
02:34:08,240 --> 02:34:10,440
AS WELL AS DEVELOPING AND 

4112
02:34:10,440 --> 02:34:11,120
VALIDATE MARKERS

4113
02:34:11,120 --> 02:34:11,680
IN DIVERSE POPULATIONS USING 

4114
02:34:11,680 --> 02:34:13,640
COGNITIVE AND OTHER 

4115
02:34:13,640 --> 02:34:14,440
BIOMARKERS AS WELL AS 

4116
02:34:14,440 --> 02:34:15,400
BIOMARKERS OF KEY VASCULAR 

4117
02:34:15,400 --> 02:34:15,960
PROCESSES INCLUDING IN THE 

4118
02:34:15,960 --> 02:34:18,040
MOST COMMON SCENARIO WHERE 

4119
02:34:18,040 --> 02:34:20,880
VCID IS ACCOMPANIED BY AD IN 

4120
02:34:20,880 --> 02:34:21,600
HUMAN STUDIES.

4121
02:34:21,600 --> 02:34:23,400
--- 

4122
02:34:23,400 --> 02:34:23,920
THE NEXT WORKING BUT WOULD 

4123
02:34:23,920 --> 02:34:26,000
LIKE TO HIGHLIGHT IS THE LEWY 

4124
02:34:26,000 --> 02:34:28,640
BODY DEMENTIAL, ANOTHER 

4125
02:34:28,640 --> 02:34:32,400
HIGHLY DISABLING ADRD 

4126
02:34:32,400 --> 02:34:34,520
CATEGORY OF DEMENTIA BUT ALSO 

4127
02:34:34,520 --> 02:34:38,880
THE FIELD THAT TOOK ON THE 

4128
02:34:38,880 --> 02:34:39,440
COMPLEXITY THAT UNDERLINES 

4129
02:34:39,440 --> 02:34:41,480
THE DISEASE LARGELY DOMINATED 

4130
02:34:41,480 --> 02:34:42,480
BY THE-- PATHOLOGIST AND THE 

4131
02:34:42,480 --> 02:34:45,040
WORKING GROUP LED BY DOCTORS 

4132
02:34:45,040 --> 02:34:50,640
LEVERENZ AND KANTARCI SHARE 

4133
02:34:50,640 --> 02:34:53,800
THE RECOMMENDATIONS INCLUDING 

4134
02:34:53,800 --> 02:34:54,440
THE PARITY TO PREPARE AND 

4135
02:34:54,440 --> 02:34:55,040
INITIATE CLINICAL TRIALS THAT 

4136
02:34:55,040 --> 02:34:55,640
AIM TO ALLEVIATE OR SLOW THE 

4137
02:34:55,640 --> 02:34:59,000
COURSE OF LBD SYMPTOMS AND 

4138
02:34:59,000 --> 02:34:59,640
DELAY OR PREVENT THE ONSET OF 

4139
02:34:59,640 --> 02:35:03,400
DISEASE. 

4140
02:35:03,400 --> 02:35:03,920
ONE OF THE PRIORITIES THAT 

4141
02:35:03,920 --> 02:35:04,880
ALIGNS VERY CLOSELY WITH THE 

4142
02:35:04,880 --> 02:35:05,560
PUBLIC STAKEHOLDERS' INPUT.

4143
02:35:05,560 --> 02:35:06,800
--- 

4144
02:35:06,800 --> 02:35:09,160
ANOTHER TOP PRIORITY IN THE 

4145
02:35:09,160 --> 02:35:10,040
WORKGROUP IS A RECOMMENDATION 

4146
02:35:10,040 --> 02:35:14,440
TO DELINEATE GENETIC LOCI  

4147
02:35:14,440 --> 02:35:14,880
AND THEIR FUNCTIONS 

4148
02:35:14,880 --> 02:35:15,480
CONTRIBUTING TO THE ONSET AND 

4149
02:35:15,480 --> 02:35:21,080
PROGRESSION OF LBDS USING 

4150
02:35:21,080 --> 02:35:23,440
GENETIC, TRANSCRIPTOMIC 

4151
02:35:23,440 --> 02:35:23,840
ANALYSIS.

4152
02:35:23,840 --> 02:35:27,280
--- 

4153
02:35:27,280 --> 02:35:28,160
AND FINALLY MULTIPLE OR MIXED 

4154
02:35:28,160 --> 02:35:30,960
ETIOLOGY DEMENTIAS, MED 

4155
02:35:30,960 --> 02:35:38,040
ITSELF REMAINS PERHAPS THE 

4156
02:35:38,040 --> 02:35:38,520
MOST COMPLEX IF NOT THE 

4157
02:35:38,520 --> 02:35:39,680
UNIFYING CATEGORY. GIVEN  

4158
02:35:39,680 --> 02:35:40,120
THAT MOST INDIVIDUALS 

4159
02:35:40,120 --> 02:35:40,720
DIAGNOSED WITH DEMENTIA ARE 

4160
02:35:40,720 --> 02:35:42,080
KNOWN TO HAVE MIXED 

4161
02:35:42,080 --> 02:35:44,720
PATHOLOGIES. BUT THE MED 

4162
02:35:44,720 --> 02:35:45,200
WORKING GROUP REALLY 

4163
02:35:45,200 --> 02:35:45,680
MAINTAINED WITH A MORE 

4164
02:35:45,680 --> 02:35:47,480
COMPREHENSIVE APPROACH IS TO 

4165
02:35:47,480 --> 02:35:48,440
THE RECOMMENDATIONS FOCUSING 

4166
02:35:48,440 --> 02:35:51,960
ON DISEASE DETECTION  AND 

4167
02:35:51,960 --> 02:35:52,440
DIAGNOSIS AS WELL AS 

4168
02:35:52,440 --> 02:35:55,320
INTERVENTION AND TREATMENT  

4169
02:35:55,320 --> 02:35:55,880
FUELED BY BASIC SCIENCE AND 

4170
02:35:55,880 --> 02:35:58,160
SUPPORTED BY DATA 

4171
02:35:58,160 --> 02:35:58,760
HARMONIZATION AND SUSTAINING 

4172
02:35:58,760 --> 02:36:04,080
THE DEMENTIA CAPABLE 

4173
02:36:04,080 --> 02:36:04,680
WORKFORCE, A VERY IMPORTANT 

4174
02:36:04,680 --> 02:36:05,280
FOCUS OF THE WORKBOOK.

4175
02:36:05,280 --> 02:36:09,040
--- 

4176
02:36:09,040 --> 02:36:09,600
IN THIS CONTEXT THE WORKGROUP 

4177
02:36:09,600 --> 02:36:20,040
LED BY DOCTOR POSSIN      

4178
02:36:24,200 --> 02:36:24,680
WORK TO EVALUATE PRAGMATIC 

4179
02:36:24,680 --> 02:36:25,240
APPROACHES TO OBJECTIVELY 

4180
02:36:25,240 --> 02:36:25,800
DETECT COGNITIVE IMPAIRMENT 

4181
02:36:25,800 --> 02:36:26,400
AND LINK TO QUALITY CARE WHEN 

4182
02:36:26,400 --> 02:36:26,960
THE PATIENT, CARE PARTNER, 

4183
02:36:26,960 --> 02:36:27,560
COMMISSION REPORTS COGNITIVE, 

4184
02:36:27,560 --> 02:36:28,080
BEHAVIORAL OR FUNCTIONAL 

4185
02:36:28,080 --> 02:36:28,560
CHANGES IN THE SECOND 

4186
02:36:28,560 --> 02:36:29,040
PRIORITY IS TO CONDUCT 

4187
02:36:29,040 --> 02:36:29,640
CLINICAL STUDIES ON APPROVED 

4188
02:36:29,640 --> 02:36:32,360
A PROMISING INTERVENTIONS AND 

4189
02:36:32,360 --> 02:36:32,920
TREATMENT TO MITIGATE RISK 

4190
02:36:32,920 --> 02:36:33,600
FOR COGNITIVE THE CLIENT.

4191
02:36:33,600 --> 02:36:35,880
AND WITHIN THE FRAMEWORK OF 

4192
02:36:35,880 --> 02:36:36,480
MED THERE ARE SPECIAL TOPICS 

4193
02:36:36,480 --> 02:36:39,000
AS YOU HEARD. 

4194
02:36:39,000 --> 02:36:39,560
TWO SPECIAL TOPICS HAVE BEEN 

4195
02:36:39,560 --> 02:36:40,520
ADOPTED TOWARD PRIOR ADRD 

4196
02:36:40,520 --> 02:36:46,200
SUMMIT OF 2019, WHICH ARE 

4197
02:36:46,200 --> 02:36:50,960
CURRENTLY THE TWO  INDIVIDUAL 

4198
02:36:50,960 --> 02:36:54,880
SPECIAL TOPICS THAT HAVE BEEN 

4199
02:36:54,880 --> 02:36:58,320
PRESENTED THERE, WITH 

4200
02:36:58,320 --> 02:36:58,920
INDIVIDUAL TOP PRIORITIES AND 

4201
02:36:58,920 --> 02:36:59,640
RECOMMENDATIONS.

4202
02:36:59,640 --> 02:37:01,240
THE POST TRAUMATIC INJURY 

4203
02:37:01,240 --> 02:37:09,600
ADRD OR POST-TBI ADRD GROUP 

4204
02:37:09,600 --> 02:37:13,560
CHAIRED BY DOCTOR O'CONNOR, 

4205
02:37:13,560 --> 02:37:16,880
PROMOTED COLLABORATION AMONG 

4206
02:37:16,880 --> 02:37:17,480
TBI AND DEMENTIA RESEARCH IS 

4207
02:37:17,480 --> 02:37:23,360
TO WORKING GROUPS,  

4208
02:37:23,360 --> 02:37:23,960
RETROSPECTIVE AND PROSPECTIVE 

4209
02:37:23,960 --> 02:37:24,440
DATA AND MEASUREMENT 

4210
02:37:24,440 --> 02:37:24,840
HARMONIZATION AND 

4211
02:37:24,840 --> 02:37:29,760
INTERDISCIPLINARY RESEARCH, 

4212
02:37:29,760 --> 02:37:30,320
WITH PATHOLOGY MAKING GREAT 

4213
02:37:30,320 --> 02:37:31,520
STRIDES IN SHOWING 

4214
02:37:31,520 --> 02:37:32,040
SIGNIFICANT ADVANCES IN 

4215
02:37:32,040 --> 02:37:32,600
SCIENCE IN THE PAST SEVERAL 

4216
02:37:32,600 --> 02:37:32,920
YEARS.

4217
02:37:32,920 --> 02:37:33,200
--- 

4218
02:37:33,200 --> 02:37:35,040
THE SECOND SPECIAL TOPIC, TDP 

4219
02:37:35,040 --> 02:37:44,680
43 IN COMMON LATE-CONCEPT 

4220
02:37:44,680 --> 02:37:45,320
DEMENTIAS WAS CHAIRED BY 

4221
02:37:45,320 --> 02:37:46,080
DOCTOR SCHNEIDER WHO 

4222
02:37:46,080 --> 02:37:48,360
PRESENTED THEIR PRIORITIES IN 

4223
02:37:48,360 --> 02:37:52,200
DEFINING LATE, WHICH IS A 

4224
02:37:52,200 --> 02:37:59,040
CLEVER ACRONYM FOR THE   

4225
02:37:59,040 --> 02:37:59,480
LIMBIC PREDOMINANT 

4226
02:37:59,480 --> 02:37:59,920
AGE-RELATED TDP-43 

4227
02:37:59,920 --> 02:38:03,080
ENCEPHALOPATHY, 

4228
02:38:03,080 --> 02:38:07,400
AND DEFINING THE PATHOLOGIC, 

4229
02:38:07,400 --> 02:38:13,240
CLINICAL, GENETIC AND 

4230
02:38:13,240 --> 02:38:13,880
MOLECULAR CLASSIFICATION AND 

4231
02:38:13,880 --> 02:38:18,440
DIAGNOSTIC BOUNDARIES. 

4232
02:38:18,440 --> 02:38:20,360
AND FINALLY THE EMERGING 

4233
02:38:20,360 --> 02:38:21,000
SIGNS WITHIN THE SPECIAL 

4234
02:38:21,000 --> 02:38:21,440
TOPICS WAS THE MUCH 

4235
02:38:21,440 --> 02:38:23,400
ANTICIPATED PRESENTATION ON 

4236
02:38:23,400 --> 02:38:26,600
THE IMPACT OF CVOID-19 ON THE 

4237
02:38:26,600 --> 02:38:33,640
AD/ADRD RISK AND OUTCOMES. 

4238
02:38:33,640 --> 02:38:34,240
OBVIOUSLY OUR LIVES HAVE BEEN 

4239
02:38:34,240 --> 02:38:36,280
TREMENDOUSLY DOMINATED BY THE 

4240
02:38:36,280 --> 02:38:38,080
TOPIC OF CVOID-19 OVER THE 

4241
02:38:38,080 --> 02:38:39,880
PAST SEVERAL YEARS AND THIS 

4242
02:38:39,880 --> 02:38:44,440
TOPIC WAS WORTHY OF A SPECIAL 

4243
02:38:44,440 --> 02:38:45,480
AND TRULY EMERGING SCIENCE 

4244
02:38:45,480 --> 02:38:46,200
STATUS IN 2022. 

4245
02:38:46,200 --> 02:38:47,400
--- 

4246
02:38:47,400 --> 02:38:48,720
AS YOU KNOW THERE ARE NEARLY 

4247
02:38:48,720 --> 02:38:55,680
94 MILLION SARS-COV-2 

4248
02:38:55,680 --> 02:38:56,280
INFECTION SURVIVORS IN THE 

4249
02:38:56,280 --> 02:39:00,920
UNITED STATES ALONE.  WHAT WE 

4250
02:39:00,920 --> 02:39:03,120
AS CLINICIANS LEARNED FROM 

4251
02:39:03,120 --> 02:39:03,720
THE BEGINNING OF BATTLE WITH 

4252
02:39:03,720 --> 02:39:04,160
HIS INFECTION IS THAT 

4253
02:39:04,160 --> 02:39:04,520
NEUROLOGICAL, 

4254
02:39:04,520 --> 02:39:10,800
NEUROPSYCHIATRIC AND 

4255
02:39:10,800 --> 02:39:11,320
COGNITIVE COMPLAINTS ARE 

4256
02:39:11,320 --> 02:39:11,920
COMMON AMONG SURVIVORS AND WE 

4257
02:39:11,920 --> 02:39:15,720
HAVE LEARNED THAT THE 

4258
02:39:15,720 --> 02:39:19,280
SARS-COV-2 INFECTION HAS 

4259
02:39:19,280 --> 02:39:20,400
LONG-TERM IMPACT ON THE BRAIN 

4260
02:39:20,400 --> 02:39:20,880
INCLUDING THE POTENTIAL 

4261
02:39:20,880 --> 02:39:24,680
DOWNSTREAM EFFECT ON 

4262
02:39:24,680 --> 02:39:25,160
NEURODEGENERATIVE AND 

4263
02:39:25,160 --> 02:39:25,760
VASCULAR INJURY PATHWAYS AND 

4264
02:39:25,760 --> 02:39:26,520
WHILE THE OVERALL IMPACT OF 

4265
02:39:26,520 --> 02:39:31,360
AD/ADRD RISK AND OUTCOMES 

4266
02:39:31,360 --> 02:39:31,960
REMAINS UNKNOWN AT THIS POINT 

4267
02:39:31,960 --> 02:39:32,520
THE POTENTIAL DETRIMENTAL 

4268
02:39:32,520 --> 02:39:36,280
EFFECTS OF AD/ADRD MAY 

4269
02:39:36,280 --> 02:39:39,400
INCLUDE INCREASED INCIDENCE 

4270
02:39:39,400 --> 02:39:40,200
OF COGNITIVE IMPAIRMENT AND 

4271
02:39:40,200 --> 02:39:41,080
DEMENTIA CASES IN THE US AND 

4272
02:39:41,080 --> 02:39:44,880
WORLDWIDE AS TIME GOES BY.

4273
02:39:44,880 --> 02:39:45,320
ACCELERATED COURSE OF 

4274
02:39:45,320 --> 02:39:45,920
COGNITIVE DECLINE AMONG THOSE 

4275
02:39:45,920 --> 02:39:49,120
ALREADY DIAGNOSED WITH 

4276
02:39:49,120 --> 02:39:52,280
AD/ADRD, A NEW CATEGORY.

4277
02:39:52,280 --> 02:39:54,400
ACCELERATED COURSE OF 

4278
02:39:54,400 --> 02:39:54,960
NEURODEGENERATION AND BRING 

4279
02:39:54,960 --> 02:39:55,480
VASCULAR PATHOLOGY AMONG 

4280
02:39:55,480 --> 02:39:57,400
ALREADY DIAGNOSED OR 

4281
02:39:57,400 --> 02:40:05,080
ASYMPTOMATIC POPULATIONS.

4282
02:40:05,080 --> 02:40:05,560
A SHIFT IN THE POPULATION 

4283
02:40:05,560 --> 02:40:06,040
TIMELINE OF COGNITIVE 

4284
02:40:06,040 --> 02:40:06,640
IMPAIRMENT/DEMENTIA CLINICAL 

4285
02:40:06,640 --> 02:40:07,200
ANSWER TO HER YOUNGER AGES 

4286
02:40:07,200 --> 02:40:09,280
AND THEREFORE INCREASING  

4287
02:40:09,280 --> 02:40:10,920
INCIDENCE OF EARLY ONSET AS 

4288
02:40:10,920 --> 02:40:11,480
WELL AS INCREASE MORTALITY 

4289
02:40:11,480 --> 02:40:12,000
AMONG INDIVIDUALS WITH 

4290
02:40:12,000 --> 02:40:12,520
ADVANCED DEMENTIA.

4291
02:40:12,520 --> 02:40:22,520
--- 

4292
02:40:23,160 --> 02:40:23,680
AT THIS TIME THE DATA STILL 

4293
02:40:23,680 --> 02:40:24,240
SCARCE AND KNOWLEDGE IS 

4294
02:40:24,240 --> 02:40:33,680
RAPIDLY EVOLVING. 

4295
02:40:33,680 --> 02:40:36,320
AS SEEN AND RECENTLY 

4296
02:40:36,320 --> 02:40:36,800
PUBLISHED A NUMBER OF 

4297
02:40:36,800 --> 02:40:37,360
STUDIES, ONE OF THEM ON THE 

4298
02:40:37,360 --> 02:40:37,880
LEFT, THEY EXAMINE 400 

4299
02:40:37,880 --> 02:40:40,320
PATIENTS WERE TESTED POSITIVE 

4300
02:40:40,320 --> 02:40:50,800
FOR CVOID-19 AND SHOWED UP 

4301
02:40:53,440 --> 02:40:53,880
REASONABLE CHANGES IN THE 

4302
02:40:53,880 --> 02:40:55,840
BRAIN STRUCTURE CORRESPONDENT 

4303
02:40:55,840 --> 02:40:58,320
DECLINE AND NOTABLY THE 

4304
02:40:58,320 --> 02:40:58,880
CARETAKERS AS SHOWN IN A 

4305
02:40:58,880 --> 02:40:59,320
RECENT INTERNATIONAL 

4306
02:40:59,320 --> 02:41:01,280
COLLABORATION PUBLISHED IN 

4307
02:41:01,280 --> 02:41:02,000
2022 IN THE STUDY ON THE 

4308
02:41:02,000 --> 02:41:02,320
RIGHT.

4309
02:41:02,320 --> 02:41:04,760
--- 

4310
02:41:04,760 --> 02:41:05,280
SO WHILE WE HAVE A LOT OF 

4311
02:41:05,280 --> 02:41:08,120
QUESTIONS TO ANSWER IN THE 

4312
02:41:08,120 --> 02:41:13,320
FUTURE RELATED TO THE SPECIAL 

4313
02:41:13,320 --> 02:41:14,520
TOPIC, AND THE WAY IT RELATES 

4314
02:41:14,520 --> 02:41:15,040
TO THE REST OF THE POST- 

4315
02:41:15,040 --> 02:41:23,200
(INDISCERNIBLE) OF COVID AS 

4316
02:41:23,200 --> 02:41:24,200
PRESENTED EARLIER OR LONG 

4317
02:41:24,200 --> 02:41:27,120
COVID SYNDROME THAT IS KNOWN 

4318
02:41:27,120 --> 02:41:29,200
TO HAVE COGNITIVE FEATURES IS 

4319
02:41:29,200 --> 02:41:33,520
THE 2022 SCIENTIFIC SHARE  

4320
02:41:33,520 --> 02:41:34,080
HAD THE PRIVILEGE TO FORM A 

4321
02:41:34,080 --> 02:41:34,680
SPECIAL TOPIC WORKING GROUP 

4322
02:41:34,680 --> 02:41:37,280
IN COLLABORATION WITH DOCTOR 

4323
02:41:37,280 --> 02:41:40,320
SUDHA SESHADRI, AND PRESENTED 

4324
02:41:40,320 --> 02:41:42,680
OUR INITIAL RECOMMENDATIONS 

4325
02:41:42,680 --> 02:41:44,000
PUTTING THE RECOMMENDATION TO 

4326
02:41:44,000 --> 02:41:44,440
ESTABLISH RESEARCH 

4327
02:41:44,440 --> 02:41:45,480
INFRASTRUCTURE ENABLING 

4328
02:41:45,480 --> 02:41:47,120
CLINICAL, EPIDEMIOLOGICAL AND 

4329
02:41:47,120 --> 02:41:52,240
BASIC RESEARCH STUDIES OF 

4330
02:41:52,240 --> 02:41:56,000
CVOID-19 IMPACT ON RISK AND 

4331
02:41:56,000 --> 02:41:56,520
OUTCOMES  PRIORITIZING 

4332
02:41:56,520 --> 02:41:57,080
DISPROPORTIONATELY AFFECTED 

4333
02:41:57,080 --> 02:42:03,480
POPULATIONS AND CLINICAL 

4334
02:42:03,480 --> 02:42:04,280
TRIALS READINESS, THIS IS ONE 

4335
02:42:04,280 --> 02:42:04,840
OF THE PRIORITIES THAT IS 

4336
02:42:04,840 --> 02:42:08,200
CLOSELY DEVELOPED WITH OTHER 

4337
02:42:08,200 --> 02:42:08,760
WORKING GROUPS PARTICULARLY 

4338
02:42:08,760 --> 02:42:09,280
EFFECTIVE IN OUR SUMMIT 

4339
02:42:09,280 --> 02:42:09,680
PREPARATION.

4340
02:42:09,680 --> 02:42:11,120
--- 

4341
02:42:11,120 --> 02:42:12,280
OTHER RECOMMENDATIONS FOR THE 

4342
02:42:12,280 --> 02:42:15,120
SPECIAL TOPIC INCLUDED 

4343
02:42:15,120 --> 02:42:15,600
CHARACTERIZATION OF THE 

4344
02:42:15,600 --> 02:42:19,800
CLINICAL PHENOTYPE AND 

4345
02:42:19,800 --> 02:42:20,280
DEVELOPING DIAGNOSTIC 

4346
02:42:20,280 --> 02:42:20,840
CRITERIA FOR NEUROCOGNITIVE 

4347
02:42:20,840 --> 02:42:21,360
IMPAIRMENT AND DEMENTIA 

4348
02:42:21,360 --> 02:42:23,560
ASSOCIATED WITH COVID. 

4349
02:42:23,560 --> 02:42:26,800
EXPLORING INTERACTIONS OF 

4350
02:42:26,800 --> 02:42:27,280
SOCIAL, STRUCTURAL, AND 

4351
02:42:27,280 --> 02:42:31,120
SYSTEMIC INEQUALITIES, 

4352
02:42:31,120 --> 02:42:31,720
COMORBIDITIES AND SOCIAL AND 

4353
02:42:31,720 --> 02:42:32,280
MEDICAL INTERVENTIONS WITH 

4354
02:42:32,280 --> 02:42:32,880
RISK AND YOUR COGNITIVE 

4355
02:42:32,880 --> 02:42:35,760
SEQUELA OF CVOID-19. 

4356
02:42:35,760 --> 02:42:40,440
AND ADVANCED UNDERSTANDING 

4357
02:42:40,440 --> 02:42:40,920
THE BASIC MECHANISMS OF 

4358
02:42:40,920 --> 02:42:41,440
ALIGNING NEUROCOGNITIVE 

4359
02:42:41,440 --> 02:42:43,280
IMPAIRMENT AND DEMENTIA DUE 

4360
02:42:43,280 --> 02:42:48,280
TO CVOID-19,  AND THE 

4361
02:42:48,280 --> 02:42:48,720
FOUNDATION FOR EARLY 

4362
02:42:48,720 --> 02:42:49,240
INTERVENTION TRIAL SO I 

4363
02:42:49,240 --> 02:42:50,800
ENCOURAGE YOU TO STAY TUNED  

4364
02:42:50,800 --> 02:42:51,480
TO THIS TOPIC WE ARE EXCITED 

4365
02:42:51,480 --> 02:42:52,560
TO INCLUDE IT WITHIN THE 2022 

4366
02:42:52,560 --> 02:42:54,480
ADRD SUMMIT CONTEXT. 

4367
02:42:54,480 --> 02:43:01,720
--- 

4368
02:43:01,720 --> 02:43:02,280
SO THE SUMMIT WAS A TERRIFIC 

4369
02:43:02,280 --> 02:43:03,400
OPPORTUNITY TO LEARN MORE 

4370
02:43:03,400 --> 02:43:05,160
ABOUT SCIENTIFIC ADVANCES, TO 

4371
02:43:05,160 --> 02:43:07,120
DISCUSS AND DEBATE THE 

4372
02:43:07,120 --> 02:43:11,600
PERCEIVED GAPS AND IDENTIFY 

4373
02:43:11,600 --> 02:43:12,240
TOP PRIORITIES AND THE WAYS 

4374
02:43:12,240 --> 02:43:12,880
TO MOVE TOWARDS BOTH THE 

4375
02:43:12,880 --> 02:43:18,520
NATIONAL PLAN GOALS AS WELL 

4376
02:43:18,520 --> 02:43:20,840
AS THE BENEFIT OF OUR 

4377
02:43:20,840 --> 02:43:21,440
PATIENTS, THEIR FAMILIES AND 

4378
02:43:21,440 --> 02:43:24,280
SOCIETY AT LARGE. I WANTED TO 

4379
02:43:24,280 --> 02:43:24,840
THANK MY FANTASTIC TEAM IN 

4380
02:43:24,840 --> 02:43:35,200
PLANNING AND  IN THE 

4381
02:43:36,560 --> 02:43:36,880
EXECUTION OF SOME 

4382
02:43:36,880 --> 02:43:37,440
SPECIFICALLY THE ADRD CORE 

4383
02:43:37,440 --> 02:43:38,040
GROUP AND A DEDICATED SUPPORT 

4384
02:43:38,040 --> 02:43:41,520
STAFF, DR. WHITAKER AND DR. 

4385
02:43:41,520 --> 02:43:48,560
MCCARTNEY. 

4386
02:43:48,560 --> 02:43:51,520
A BIG GREAT THANKS.

4387
02:43:51,520 --> 02:43:52,120
I WOULD LIKE TO RESPECTFULLY 

4388
02:43:52,120 --> 02:43:52,520
UNDERSCORE THE OLD 

4389
02:43:52,520 --> 02:43:56,200
RECOMMENDATIONS IN THE REPORT 

4390
02:43:56,200 --> 02:43:56,760
REPRESENT CRITICAL NATIONAL 

4391
02:43:56,760 --> 02:44:00,280
RESEARCH PATHWAYS   THAT ARE 

4392
02:44:00,280 --> 02:44:00,800
TOP SCIENTIFIC PRIORITIES 

4393
02:44:00,800 --> 02:44:01,400
TOWARD THE GOAL OF ACHIEVING 

4394
02:44:01,400 --> 02:44:01,960
EFFECTIVE PREVENTION AND 

4395
02:44:01,960 --> 02:44:05,600
TREATMENT OF AD AND AD/ADRD.

4396
02:44:05,600 --> 02:44:07,480
AND WITH THE INPUT OF THE 

4397
02:44:07,480 --> 02:44:09,080
MULTIPLE STAKEHOLDERS AND THE 

4398
02:44:09,080 --> 02:44:09,600
PUBLIC, ON BEHALF OF THE 

4399
02:44:09,600 --> 02:44:15,080
COMMITTEE COCHAIRS, MEMBERS   

4400
02:44:15,080 --> 02:44:16,440
T WE RESPECTFULLY SUBMITHE 

4401
02:44:16,440 --> 02:44:22,640
ADRD SUMMIT 2022 REPORT. 

4402
02:44:22,640 --> 02:44:23,200
THANK YOU AND I WILL BE HAPPY 

4403
02:44:23,200 --> 02:44:24,480
TO ENTERTAIN ANY QUESTIONS.

4404
02:44:24,480 --> 02:44:27,200
--- 

4405
02:44:27,200 --> 02:44:30,520
>> THANK YOU THAT WAS
GREAT. 

4406
02:44:30,520 --> 02:44:31,120
I ACTUALLY FORGOT TO MENTION 

4407
02:44:31,120 --> 02:44:32,280
AT THE BEGINNING AS YOU 

4408
02:44:32,280 --> 02:44:34,200
POINTED OUT THAT THIS REPORT 

4409
02:44:34,200 --> 02:44:39,720
WHICH WAS IN THE ECB, THE 

4410
02:44:39,720 --> 02:44:40,240
COUNCIL ASKED TO FORMALLY 

4411
02:44:40,240 --> 02:44:40,840
ACCEPT THIS REPORT WHICH DOES 

4412
02:44:40,840 --> 02:44:42,800
NOT MEAN YOU AGREE WITH EVERY 

4413
02:44:42,800 --> 02:44:44,400
SINGLE LINE OF IT BUT THAT 

4414
02:44:44,400 --> 02:44:48,600
YOU BASICALLY ACCEPT ITS 

4415
02:44:48,600 --> 02:44:49,200
RECOMMENDATIONS. THANKS A LOT 

4416
02:44:49,200 --> 02:44:51,640
THAT WAS A TREMENDOUS SUMMARY.

4417
02:44:51,640 --> 02:44:52,200
I THINK YOU CAN TAKE DOWN THE 

4418
02:44:52,200 --> 02:44:52,520
SLIDE.

4419
02:44:52,520 --> 02:44:55,080
--- 

4420
02:44:55,080 --> 02:44:59,960
ARE THERE QUESTIONS?

4421
02:44:59,960 --> 02:45:05,000
>> I JUST WANT TO THANK
THEM 

4422
02:45:05,000 --> 02:45:05,600
FOR THE TREMENDOUS EFFORT PUT 

4423
02:45:05,600 --> 02:45:08,960
INTO THIS. IS A BEAUTIFUL, 

4424
02:45:08,960 --> 02:45:09,680
BEAUTIFUL SUMMARY, THANK YOU. 

4425
02:45:09,680 --> 02:45:11,560
>> DR. FINKELSTEIN: IT'S A

4426
02:45:11,560 --> 02:45:12,760
HUGE UNDERTAKING. 

4427
02:45:12,760 --> 02:45:14,480
TIM?

4428
02:45:14,480 --> 02:45:24,880
>> MY QUESTION WAS TO ROD.

4429
02:45:26,960 --> 02:45:27,480
SINCE YOU BOTHERED TO SHOW IS 

4430
02:45:27,480 --> 02:45:32,080
THE EXCITING DATA. 

4431
02:45:32,080 --> 02:45:32,560
WHAT FRACTION OF PATIENTS 

4432
02:45:32,560 --> 02:45:33,960
CARRIED THAT TRANSLOCATION?

4433
02:45:33,960 --> 02:45:35,920
>> DR. CORRIVEAU: THAT 

4434
02:45:35,920 --> 02:45:38,440
PARTICULAR ONE TIM IS NOT 

4435
02:45:38,440 --> 02:45:39,640
GOING TO BE A VERY LARGE 

4436
02:45:39,640 --> 02:45:40,480
NUMBER. I THINK THE OVERALL 

4437
02:45:40,480 --> 02:45:46,200
POINT THOUGH IS A PRINCIPLE 

4438
02:45:46,200 --> 02:45:46,760
OF THE POSSIBILITY OF THIS 

4439
02:45:46,760 --> 02:45:47,840
TYPE OF INTERVENTION AND 

4440
02:45:47,840 --> 02:45:48,920
PURSUING IT. 

4441
02:45:48,920 --> 02:45:50,320
>> OKAY. 

4442
02:45:50,320 --> 02:45:52,000
>> DR. CORRIVEAU: IT WILL
NOT 

4443
02:45:52,000 --> 02:45:53,440
BE A LARGE NUMBER. 

4444
02:45:53,440 --> 02:45:54,480
>> THANK YOU. 

4445
02:45:54,480 --> 02:45:57,920
>> DR. FINKELSTEIN: BOB?

4446
02:45:57,920 --> 02:46:01,600
>> >> DR. BROWN: 

4447
02:46:01,600 --> 02:46:07,520
A COUPLE OF THINGS, FIRST OF 

4448
02:46:07,520 --> 02:46:08,120
ALL THANK YOU NATALIA FOR THE 

4449
02:46:08,120 --> 02:46:08,680
FANTASTIC ORAL REPORT AND 

4450
02:46:08,680 --> 02:46:10,400
ALSO FOR THE WRITTEN DOCUMENT 

4451
02:46:10,400 --> 02:46:11,000
WHICH IS STATE OF THE ART AND 

4452
02:46:11,000 --> 02:46:13,600
FANTASTIC. 

4453
02:46:13,600 --> 02:46:14,160
I WANT TO COMMENT BRIEFLY ON 

4454
02:46:14,160 --> 02:46:15,480
WHAT WAS JUST BROUGHT UP, THE 

4455
02:46:15,480 --> 02:46:17,080
ISSUE OF SUPPRESSION OF 

4456
02:46:17,080 --> 02:46:19,200
DOMINANT REACTING 

4457
02:46:19,200 --> 02:46:22,400
NEURODEGENERATIVE GENES. 

4458
02:46:22,400 --> 02:46:24,520
IT HAS NOW BEEN DEMONSTRATED 

4459
02:46:24,520 --> 02:46:25,960
OVER THE LAST TWO OR THREE 

4460
02:46:25,960 --> 02:46:26,880
YEARS THAT IN HUMAN PATIENTS 

4461
02:46:26,880 --> 02:46:27,720
IS POSSIBLY SUPPRESSED NOT 

4462
02:46:27,720 --> 02:46:33,640
ONLY FOS FOR ALSO C9 OR C72 

4463
02:46:33,640 --> 02:46:35,520
WHICH RELATE TO BOTH ALS AND 

4464
02:46:35,520 --> 02:46:38,160
FTD. 

4465
02:46:38,160 --> 02:46:38,720
THE ISSUE IS THAT MUCH AS WAS 

4466
02:46:38,720 --> 02:46:40,400
THE CASE WITH NEIL 

4467
02:46:40,400 --> 02:46:47,440
SCHNEIDER'S CASE, THIS DOES 

4468
02:46:47,440 --> 02:46:48,000
NOT MAKE PEOPLE BETTER, IT 

4469
02:46:48,000 --> 02:46:48,600
PROBABLY SLOWS THE DISEASE A 

4470
02:46:48,600 --> 02:46:50,800
BIT. 

4471
02:46:50,800 --> 02:46:51,280
THE ISSUE IS THAT THIS 

4472
02:46:51,280 --> 02:46:54,200
EMPHASIZES TWO THINGS. FIRST 

4473
02:46:54,200 --> 02:46:59,040
OF ALL AS NATALIA ALLUDED, TO 

4474
02:46:59,040 --> 02:46:59,600
UNDERSTANDING  DOWNSTREAM 

4475
02:46:59,600 --> 02:47:02,840
EVENTS AND NOTABLE POINTS  

4476
02:47:02,840 --> 02:47:03,400
WHICH ARE PARTICULARLY GOOD 

4477
02:47:03,400 --> 02:47:06,840
ACHILLES HEELS FOR THERAPY  

4478
02:47:06,840 --> 02:47:08,480
INDEPENDENTLY OF SHUTTING OFF 

4479
02:47:08,480 --> 02:47:09,040
THE TRIGGER WHICH HAS TO BE 

4480
02:47:09,040 --> 02:47:09,640
DONE WHEN THERE IS A TRIGGER. 

4481
02:47:09,640 --> 02:47:10,080
I GET THAT.

4482
02:47:10,080 --> 02:47:14,400
--- 

4483
02:47:14,400 --> 02:47:15,200
BUT ALSO ANOTHER POINT THAT 

4484
02:47:15,200 --> 02:47:15,760
MIGHT BE WORTH EMPHASIZING 

4485
02:47:15,760 --> 02:47:17,560
MORE-- AND SHE DID ALLUDE TO 

4486
02:47:17,560 --> 02:47:20,280
THIS-- THE CRITICAL ASPECT IS 

4487
02:47:20,280 --> 02:47:25,680
IDENTIFYING EARLY MARGINALLY 

4488
02:47:25,680 --> 02:47:27,320
OR MINIMALLY SYMPTOMATIC 

4489
02:47:27,320 --> 02:47:29,120
PATIENTS WITH THESE LESIONS 

4490
02:47:29,120 --> 02:47:29,720
WHERE WE CAN INTERVENE BEFORE 

4491
02:47:29,720 --> 02:47:32,200
THE HOUSE STARTS TO BURN UP 

4492
02:47:32,200 --> 02:47:32,640
AND FIRE.

4493
02:47:32,640 --> 02:47:33,880
AND SO WE NEED TO RECOGNIZE 

4494
02:47:33,880 --> 02:47:40,240
THE POINT BETWEEN 

4495
02:47:40,240 --> 02:47:45,480
PRESYMPTOMATIC AND  

4496
02:47:45,480 --> 02:47:46,040
SYMPTOMATIC AND LOOKING FOR 

4497
02:47:46,040 --> 02:47:47,840
THOSE BIOMARKERS TO IDENTIFY 

4498
02:47:47,840 --> 02:47:48,400
THE CRITICAL POINT IS SUPER 

4499
02:47:48,400 --> 02:47:48,960
IMPORTANT AND I COMMEND YOU 

4500
02:47:48,960 --> 02:47:49,920
FOR POINTING THAT OUT. 

4501
02:47:49,920 --> 02:47:56,160
>> THANK YOU SO MUCH BOB. 

4502
02:47:56,160 --> 02:47:56,760
ALSO WANTED TO SAY THAT THIS 

4503
02:47:56,760 --> 02:47:58,160
ECHOES THE SENTIMENT 

4504
02:47:58,160 --> 02:48:00,840
TREMENDOUSLY WITHIN THE 

4505
02:48:00,840 --> 02:48:04,400
PATIENT AND CAREGIVER INPUT 

4506
02:48:04,400 --> 02:48:05,880
IN EVERYTHING THAT WE 

4507
02:48:05,880 --> 02:48:12,040
DISCUSSED. THIS PRE-PODROMAL 

4508
02:48:12,040 --> 02:48:15,080
VIGILANCE FOR THE DISEASE IS 

4509
02:48:15,080 --> 02:48:17,680
SOMETHING SCREAMING AND DOING 

4510
02:48:17,680 --> 02:48:18,280
SOMETHING VERY EARLY IN THE 

4511
02:48:18,280 --> 02:48:21,440
DISEASE STAGES, 

4512
02:48:21,440 --> 02:48:22,000
IT'S SOMETHING THAT OBVIOUSLY 

4513
02:48:22,000 --> 02:48:22,520
PATIENTS ARE VERY MUCH 

4514
02:48:22,520 --> 02:48:23,800
INVESTED IN. 

4515
02:48:23,800 --> 02:48:25,440
>> 

4516
02:48:25,440 --> 02:48:28,560
>> DR. FINKELSTEIN: OKAY.

4517
02:48:28,560 --> 02:48:30,200
ANY OTHER COMMENTS ABOUT 

4518
02:48:30,200 --> 02:48:33,840
EITHER ROD'S TALK OR THE 

4519
02:48:33,840 --> 02:48:35,920
SUMMIT REPORT?

4520
02:48:35,920 --> 02:48:37,640
--- 

4521
02:48:37,640 --> 02:48:39,920
WELL THANKS TO BOTH OF YOU. 

4522
02:48:39,920 --> 02:48:42,840
WE DO NEED A MOTION TO, FOR 

4523
02:48:42,840 --> 02:48:43,440
EXAMPLE, APPROVE THE REPORT 

4524
02:48:43,440 --> 02:48:47,080
FROM THE ADRD SUMMIT. 

4525
02:48:47,080 --> 02:48:48,280
>> SO MOVED. 

4526
02:48:48,280 --> 02:48:56,320
>> DR. FINKELSTEIN: I SEE 
A 

4527
02:48:56,320 --> 02:48:57,640
MOTION AND MANY SECONDS. WHY 

4528
02:48:57,640 --> 02:49:00,320
DON'T YOU VOTE FOR THAT 

4529
02:49:00,320 --> 02:49:00,920
MOTION. THANKS AGAIN NATALIA 

4530
02:49:00,920 --> 02:49:01,480
FOR COMING. THAT WAS REALLY 

4531
02:49:01,480 --> 02:49:04,400
GREAT, AND ROD FOR HIS USUAL, 

4532
02:49:04,400 --> 02:49:06,000
LUCID PRESENTATIONS. 

4533
02:49:06,000 --> 02:49:06,800
>> THANK YOU. 

4534
02:49:06,800 --> 02:49:09,200
>> DR. FINKELSTEIN: OKAY
SO 

4535
02:49:09,200 --> 02:49:13,280
WE WILL SHIFT GEARS HERE. 

4536
02:49:13,280 --> 02:49:16,840
AND LET ME SEE.

4537
02:49:16,840 --> 02:49:17,360
I GUESS THE LAST THING IS 

4538
02:49:17,360 --> 02:49:19,360
CONCEPT CLEARANCE. THERE IS 

4539
02:49:19,360 --> 02:49:20,640
NO BREAK IN THE SCHEDULE NOW 

4540
02:49:20,640 --> 02:49:22,720
SO WE WILL PLOW RIGHT AHEAD.

4541
02:49:22,720 --> 02:49:23,240
SO WE ARE COMING DOWN THE 

4542
02:49:23,240 --> 02:49:26,040
HOME STRETCH HERE. 

4543
02:49:26,040 --> 02:49:28,320
BASICALLY AS YOU KNOW, BEFORE 

4544
02:49:28,320 --> 02:49:31,920
WE LAUNCH ANY NEW INITIATIVE 

4545
02:49:31,920 --> 02:49:32,520
WE ASK FOR CONCEPT CLEARANCE 

4546
02:49:32,520 --> 02:49:33,680
FROM COUNCIL WE HAVE ALWAYS 

4547
02:49:33,680 --> 02:49:36,360
DONE THIS BUT NOW-- DO YOU 

4548
02:49:36,360 --> 02:49:38,320
HAVE A QUESTION GINA?

4549
02:49:38,320 --> 02:49:39,680
>> NOT A QUESTION BUT AN 

4550
02:49:39,680 --> 02:49:40,280
ANNOUNCEMENT. I WANTED TO SAY 

4551
02:49:40,280 --> 02:49:43,920
THANK YOU TO NINDS BECAUSE 

4552
02:49:43,920 --> 02:49:46,240
TOMORROW IS THE DEADLINE FOR 

4553
02:49:46,240 --> 02:49:52,280
THE VERY FIRST INITIATIVE FOR 

4554
02:49:52,280 --> 02:50:00,320
THOSE INVESTIGATORS AT RISK, 

4555
02:50:00,320 --> 02:50:00,920
OR FOR SOME INVESTIGATORS I 

4556
02:50:00,920 --> 02:50:04,120
WANT TO THANK NINDS FOR THE 

4557
02:50:04,120 --> 02:50:04,720
TREMENDOUS EFFORT THAT WENT 

4558
02:50:04,720 --> 02:50:05,840
INTO THAT TOGETHER AND 

4559
02:50:05,840 --> 02:50:06,440
HOPEFULLY FINGERS CROSSED WE 

4560
02:50:06,440 --> 02:50:07,160
WILL GET SOME GREAT 

4561
02:50:07,160 --> 02:50:07,720
APPLICATIONS. 

4562
02:50:07,720 --> 02:50:10,000
>> DR. FINKELSTEIN: YEAH
THIS 

4563
02:50:10,000 --> 02:50:11,120
IS REALLY AN EFFORT BY 

4564
02:50:11,120 --> 02:50:14,640
MICHELE JONES LINDON 

4565
02:50:14,640 --> 02:50:17,360
(PHONETIC) AND HER OPEN 

4566
02:50:17,360 --> 02:50:17,960
OFFICE, INCREDIBLY IMPORTANT 

4567
02:50:17,960 --> 02:50:21,240
AND OTHER INSTITUTES WHICH 

4568
02:50:21,240 --> 02:50:21,840
SIGN ONTO THAT WHICH IS GREAT 

4569
02:50:21,840 --> 02:50:25,360
AND MY IMPRESSION IS  WE ARE 

4570
02:50:25,360 --> 02:50:26,280
GETTING A PRETTY HEALTHY 

4571
02:50:26,280 --> 02:50:26,880
RESPONSE BUT I THINK MICHELE 

4572
02:50:26,880 --> 02:50:27,480
WILL BE TALKING ABOUT THAT IN 

4573
02:50:27,480 --> 02:50:34,000
A FUTURE COUNCIL MEETING.

4574
02:50:34,000 --> 02:50:34,560
THIS IS THE LATEST THING THAT 

4575
02:50:34,560 --> 02:50:35,120
WE ARE TRYING AND IT SEEMS 

4576
02:50:35,120 --> 02:50:35,720
THAT IT HAS THE POTENTIAL TO 

4577
02:50:35,720 --> 02:50:36,240
BE SUCCESSFUL.

4578
02:50:36,240 --> 02:50:37,280
--- 

4579
02:50:37,280 --> 02:50:37,720
SO CONCEPT CLEARANCE IS 

4580
02:50:37,720 --> 02:50:40,800
ACTUALLY MANDATED BY NIH THAT 

4581
02:50:40,800 --> 02:50:42,880
WE ASKED THE COUNCIL, EVEN 

4582
02:50:42,880 --> 02:50:47,760
THOUGH WE ALWAYS USED TO DO 

4583
02:50:47,760 --> 02:50:48,520
IT. A LOT OF THE INITIATIVES 

4584
02:50:48,520 --> 02:50:49,000
THAT COME THROUGH ARE 

4585
02:50:49,000 --> 02:50:49,440
ACTUALLY BE ISSUES OF 

4586
02:50:49,440 --> 02:50:51,160
PREVIOUS INITIATIVES; WE 

4587
02:50:51,160 --> 02:50:53,440
DON'T USUALLY DISCUSS EACH OF 

4588
02:50:53,440 --> 02:50:54,000
THESE. SOMETIMES THERE'S A 

4589
02:50:54,000 --> 02:50:55,400
WHOLE BUNCH OF THEM. BUT 

4590
02:50:55,400 --> 02:50:56,520
THERE ARE THREE CONCEPTS WE 

4591
02:50:56,520 --> 02:50:58,400
WOULD LIKE TO PRESENT. IN 

4592
02:50:58,400 --> 02:50:59,640
FACT THE FIRST ONE IS EVERY 

4593
02:50:59,640 --> 02:51:01,920
ISSUE OF AN EXISTING PROGRAM 

4594
02:51:01,920 --> 02:51:04,840
FROM MICHELE JONES LONDON'S 

4595
02:51:04,840 --> 02:51:06,400
OFFICE. SO WHY DON'T I 

4596
02:51:06,400 --> 02:51:08,880
INTRODUCE MARGARET MATTHEWS 

4597
02:51:08,880 --> 02:51:11,800
FROM MICHELLE'S OFFICE WHO IS 

4598
02:51:11,800 --> 02:51:12,320
GOING TO TALK ABOUT THIS 

4599
02:51:12,320 --> 02:51:14,040
FIRST INITIATIVE. 

4600
02:51:14,040 --> 02:51:16,360
ARE YOU RUNNING YOUR SLIDES?

4601
02:51:16,360 --> 02:51:16,960
>> YES I WILL BE RUNNING
MY 

4602
02:51:16,960 --> 02:51:17,320
SLIDES. 

4603
02:51:17,320 --> 02:51:19,720
>> DR. FINKELSTEIN:
WELCOME. 

4604
02:51:19,720 --> 02:51:21,400
>> THANK YOU. 

4605
02:51:21,400 --> 02:51:26,800
-- -- 

4606
02:51:26,800 --> 02:51:28,200
IS EVERYONE ABLE TO SEE MY 

4607
02:51:28,200 --> 02:51:28,880
SLIDES IN FULL-SCREEN MODE?

4608
02:51:28,880 --> 02:51:30,120
>> DR. FINKELSTEIN: 

4609
02:51:30,120 --> 02:51:37,800
ABSOLUTELY. 

4610
02:51:37,800 --> 02:51:38,320
>> WONDERFUL GOOD
AFTERNOON 

4611
02:51:38,320 --> 02:51:39,760
EVERYONE OR I SHOULD SAY GOOD 

4612
02:51:39,760 --> 02:51:40,360
EVENING AUDIENCES YOU ARE IN 

4613
02:51:40,360 --> 02:51:41,000
EUROPE AND I'M HAPPY TO TALK 

4614
02:51:41,000 --> 02:51:48,600
WITH YOU ABOUT THE NIH  

4615
02:51:48,600 --> 02:51:49,360
NEUROSCIENCE DEVELOPMENT FOR 

4616
02:51:49,360 --> 02:51:49,960
ADVANCING THE CAREERS OF A 

4617
02:51:49,960 --> 02:51:50,520
DIVERSE RESEARCH WORKFORCE 

4618
02:51:50,520 --> 02:51:51,120
WHICH WE SHORTENED AND CALL 

4619
02:51:51,120 --> 02:52:01,520
THE DIVERSITY >> R 25. 

4620
02:52:05,520 --> 02:52:06,000
ABOUT TWO YEARS AGO WE 

4621
02:52:06,000 --> 02:52:15,120
PARTNERED WITH NIMH WITH 

4622
02:52:15,120 --> 02:52:18,760
JAMES CHURCHILL, TO BROADEN 

4623
02:52:18,760 --> 02:52:19,360
THE NEUROSCIENCE THAT WE CAN 

4624
02:52:19,360 --> 02:52:20,080
SUPPORT OF THIS INITIATIVE.

4625
02:52:20,080 --> 02:52:20,560
--- 

4626
02:52:20,560 --> 02:52:21,120
FOR THOSE OF YOU WHO MAY OR 

4627
02:52:21,120 --> 02:52:25,160
MAY NOT KNOW NINDS HAS 

4628
02:52:25,160 --> 02:52:27,280
EXTENSIVE PATHWAY TRAINING 

4629
02:52:27,280 --> 02:52:27,920
PROGRAMS THAT SPAN MANY 

4630
02:52:27,920 --> 02:52:28,520
DIFFERENT CAREER STAGES AND 

4631
02:52:28,520 --> 02:52:30,200
TRANSITION POINTS, FROM HIGH 

4632
02:52:30,200 --> 02:52:30,760
SCHOOL ALL THE WAY UP TO 

4633
02:52:30,760 --> 02:52:36,440
JUNIOR FACULTY. SOME OF THESE 

4634
02:52:36,440 --> 02:52:46,520
25 MECHANISMS INCLUDE -- THE 

4635
02:52:46,520 --> 02:52:47,120
PROGRAM SUPPORT UNDERGRADUATE 

4636
02:52:47,120 --> 02:52:54,120
RESEARCH IN THE SUMMER R 25  

4637
02:52:54,120 --> 02:52:56,200
PROGRAM SUPPORTS ALSO HUSTLE 

4638
02:52:56,200 --> 02:52:56,760
STUDENTS AND HIGH SCHOOL 

4639
02:52:56,760 --> 02:52:57,280
TEACHERS ON THEIR SUMMER 

4640
02:52:57,280 --> 02:52:57,760
BREAK AND WE RECENTLY 

4641
02:52:57,760 --> 02:52:58,360
LAUNCHED THANKS TO THE INPUT 

4642
02:52:58,360 --> 02:53:00,480
FROM THIS GROUP THE DOCTORAL 

4643
02:53:00,480 --> 02:53:01,720
READINESS PROGRAMS WHICH 

4644
02:53:01,720 --> 02:53:02,240
TARGETS POSTBACCALAUREATE 

4645
02:53:02,240 --> 02:53:02,840
STUDENTS IN CONJUNCTION WITH 

4646
02:53:02,840 --> 02:53:04,000
OUR CURRENTLY FUNDED T 32 

4647
02:53:04,000 --> 02:53:06,200
PROBLEMS IN THIS NIH 

4648
02:53:06,200 --> 02:53:14,480
NEUROSCIENCE DIVERSITY R 25 

4649
02:53:14,480 --> 02:53:15,360
PROGRAMS WHICH SUPPORTS 

4650
02:53:15,360 --> 02:53:17,280
PRE-DOCTORS UP TO EARLY 

4651
02:53:17,280 --> 02:53:17,880
CAREER FACULTY AND RECENTLY 

4652
02:53:17,880 --> 02:53:20,520
WE WERE ABLE TO PUBLISH A 

4653
02:53:20,520 --> 02:53:21,040
NOTICE OF INFORMATION TO 

4654
02:53:21,040 --> 02:53:21,640
ENCOURAGE GRANT APPLICATIONS 

4655
02:53:21,640 --> 02:53:24,120
AND FOCUS ON GETTING MORE 

4656
02:53:24,120 --> 02:53:24,720
UNDERREPRESENTED RESEARCHERS 

4657
02:53:24,720 --> 02:53:28,680
IN THE TRANSLATIONAL RESEARCH 

4658
02:53:28,680 --> 02:53:29,160
SPACE. 

4659
02:53:29,160 --> 02:53:34,960
--- 

4660
02:53:34,960 --> 02:53:36,160
SO, ONE OF THE REALLY 

4661
02:53:36,160 --> 02:53:36,720
IMPORTANT HALLMARKS OF THIS 

4662
02:53:36,720 --> 02:53:41,440
PARTICULAR DIVERSITY R 25 

4663
02:53:41,440 --> 02:53:42,040
THAT TARGETED PRE-DOCTORAL TO 

4664
02:53:42,040 --> 02:53:46,760
JUNIOR FACULTY STAGES THAT WE 

4665
02:53:46,760 --> 02:53:47,320
HAVE THE STUDENTS THAT ARE 

4666
02:53:47,320 --> 02:53:48,640
ALREADY COMMITTED TO PURSUING 

4667
02:53:48,640 --> 02:53:51,440
DOCTORAL STUDIES IN 

4668
02:53:51,440 --> 02:53:51,920
NEUROSCIENCE AND IT IS 

4669
02:53:51,920 --> 02:53:52,520
IMPORTANT TO HAVE ADDITIONAL 

4670
02:53:52,520 --> 02:53:54,160
PROFESSIONAL DEVELOPMENT 

4671
02:53:54,160 --> 02:53:56,480
OPPORTUNITIES FOR THEM TO GET 

4672
02:53:56,480 --> 02:53:58,280
FURTHER MENTORSHIP OUTSIDE OF 

4673
02:53:58,280 --> 02:53:58,880
JUST THEIR HOME INSTITUTIONS 

4674
02:53:58,880 --> 02:54:03,160
OR THEIR PI THAT THEY ARE 

4675
02:54:03,160 --> 02:54:05,160
WORKING WITH.

4676
02:54:05,160 --> 02:54:08,320
BUT IT ALSO CREATES NETWORKS 

4677
02:54:08,320 --> 02:54:08,920
AND COHORTS AND IT ALLOWS THE 

4678
02:54:08,920 --> 02:54:09,960
STUDENTS TO BUILD COMMUNITY 

4679
02:54:09,960 --> 02:54:11,680
WITH OTHER NEUROSCIENTISTS 

4680
02:54:11,680 --> 02:54:15,440
AND EXPAND THEIR EXPERIENCE. 

4681
02:54:15,440 --> 02:54:18,800
AND SO THESE ARE JUST A FEW 

4682
02:54:18,800 --> 02:54:19,400
OF THE PROGRAMS THAT I WOULD 

4683
02:54:19,400 --> 02:54:20,400
LIKE TO HIGHLIGHT, MANY OF 

4684
02:54:20,400 --> 02:54:27,160
WHICH ARE LONG-STANDING. A 

4685
02:54:27,160 --> 02:54:27,720
FEW OF YOU ON THIS COUNCIL 

4686
02:54:27,720 --> 02:54:29,120
ARE VERY INTIMATELY CONNECTED 

4687
02:54:29,120 --> 02:54:32,840
WITH AT LEAST ONE OF THESE 

4688
02:54:32,840 --> 02:54:33,440
PROGRAMS. BOTH MICHELE JONES 

4689
02:54:33,440 --> 02:54:36,760
LONDON AND I ARE IN FACT 

4690
02:54:36,760 --> 02:54:37,320
PRODUCTS ARE ONE OF THESE 

4691
02:54:37,320 --> 02:54:39,400
PROGRAMS AND THEY HAPPEN TO 

4692
02:54:39,400 --> 02:54:42,400
BE INCREDIBLY PIVOTAL IN HOW 

4693
02:54:42,400 --> 02:54:43,000
WE HAVE BEEN ABLE TO PROGRESS 

4694
02:54:43,000 --> 02:54:45,160
IN OUR CAREERS. AND IF ANY OF 

4695
02:54:45,160 --> 02:54:48,240
YOU ARE ON TWITTER  YOU CAN 

4696
02:54:48,240 --> 02:54:48,880
SEE HOW MUCH OF THESE 

4697
02:54:48,880 --> 02:54:50,640
COMMUNITIES, THESE MENTORING 

4698
02:54:50,640 --> 02:54:51,200
OPPORTUNITIES MEAN TO THE 

4699
02:54:51,200 --> 02:54:54,160
STUDENTS WHO ARE INVOLVED IN 

4700
02:54:54,160 --> 02:54:56,400
THEM. BUT NOT ONLY IS 

4701
02:54:56,400 --> 02:54:57,000
PROVIDING AN OPPORTUNITY FOR 

4702
02:54:57,000 --> 02:54:58,560
INDIVIDUALS. 

4703
02:54:58,560 --> 02:54:59,840
IT ALSO IS AN OPPORTUNITY TO 

4704
02:54:59,840 --> 02:55:05,040
CREATE INSTITUTIONAL CHANGE 

4705
02:55:05,040 --> 02:55:06,200
AND REQUIRE INSTITUTIONAL OR 

4706
02:55:06,200 --> 02:55:07,160
ORGANIZATIONAL COMMITMENTS TO 

4707
02:55:07,160 --> 02:55:11,400
INCREASING THE WORKFORCE 

4708
02:55:11,400 --> 02:55:12,120
DIVERSITY AS WELL AS 

4709
02:55:12,120 --> 02:55:12,520
INCLUSION.

4710
02:55:12,520 --> 02:55:16,000
--- 

4711
02:55:16,000 --> 02:55:24,520
AND SO ONE OF THE GAP AREAS 

4712
02:55:24,520 --> 02:55:25,040
THAT ARE BEING ADDRESSED 

4713
02:55:25,040 --> 02:55:31,960
THROUGH THIS PARTICULAR 

4714
02:55:31,960 --> 02:55:32,480
MECHANISM IS PROVIDING 

4715
02:55:32,480 --> 02:55:33,040
PROFESSIONAL OPPORTUNITIES 

4716
02:55:33,040 --> 02:55:38,880
AND NETWORKING OPPORTUNITIES 

4717
02:55:38,880 --> 02:55:39,320
FOR UNDERREPRESENTED 

4718
02:55:39,320 --> 02:55:39,880
NEUROSCIENTISTS AND ALSO 

4719
02:55:39,880 --> 02:55:40,360
ENHANCE INSTITUTIONAL 

4720
02:55:40,360 --> 02:55:40,840
COMMITMENT TO WORKFORCE 

4721
02:55:40,840 --> 02:55:42,360
DIVERSITY AND INCLUSION. 

4722
02:55:42,360 --> 02:55:47,880
FOR THIS PARTICULAR 

4723
02:55:47,880 --> 02:55:48,440
MECHANISM,  THE FOCUS IS ON 

4724
02:55:48,440 --> 02:55:48,880
GRADUATE STUDENTS, 

4725
02:55:48,880 --> 02:55:49,480
POSTDOCTORAL RESEARCHERS, AND 

4726
02:55:49,480 --> 02:55:52,200
JUNIOR FACULTY. SOME OF THESE 

4727
02:55:52,200 --> 02:55:52,800
PROGRAMS THAT HAVE ALREADY 

4728
02:55:52,800 --> 02:55:56,240
BEEN FUNDED, AS SHOWN ON THE 

4729
02:55:56,240 --> 02:55:59,840
PREVIOUS SLIDE, ACTUALLY DO 

4730
02:55:59,840 --> 02:56:00,560
LOOK AT MULTIPLE CAREER 

4731
02:56:00,560 --> 02:56:01,160
STAGES AND HELP WITH SOME OF 

4732
02:56:01,160 --> 02:56:04,080
THESE TRANSITION POINTS. 

4733
02:56:04,080 --> 02:56:04,640
FOR EXAMPLE THE SOCIETY FOR 

4734
02:56:04,640 --> 02:56:08,560
NEUROSCIENCE SCHOLARS PROGRAM 

4735
02:56:08,560 --> 02:56:09,120
ALLOWS BOTH PRE-DOCTORAL 

4736
02:56:09,120 --> 02:56:09,520
STUDENTS AS WELL AS 

4737
02:56:09,520 --> 02:56:10,120
POSTDOCTORAL RESEARCHERS TO 

4738
02:56:10,120 --> 02:56:14,800
BE INVOLVED. THE BRAINS 

4739
02:56:14,800 --> 02:56:15,400
PROGRAM RUN BY THE UNIVERSITY 

4740
02:56:15,400 --> 02:56:17,560
OF WASHINGTON HAS JUNIOR 

4741
02:56:17,560 --> 02:56:19,480
FACULTY BUT REALLY THINKING 

4742
02:56:19,480 --> 02:56:20,440
ABOUT POSITIONING THEM WELL 

4743
02:56:20,440 --> 02:56:23,320
TO BE ABLE TO GET THEIR FIRST 

4744
02:56:23,320 --> 02:56:27,280
R 01S AND ESTABLISH THEIR 

4745
02:56:27,280 --> 02:56:30,360
LABS. SO WE REALLY THINK 

4746
02:56:30,360 --> 02:56:32,320
STRATEGICALLY ABOUT THE TYPES 

4747
02:56:32,320 --> 02:56:33,120
OF PROGRAMS THAT WE ARE 

4748
02:56:33,120 --> 02:56:33,680
FUNDING THAT ALLOW FOR SOME 

4749
02:56:33,680 --> 02:56:35,400
OF THESE TRANSITION POINTS OR 

4750
02:56:35,400 --> 02:56:36,360
BRINGING TOGETHER MULTIPLE 

4751
02:56:36,360 --> 02:56:38,840
CAREER STAGES TO SERVE AS  

4752
02:56:38,840 --> 02:56:41,720
EXPERIMENTAL OR HELPING ONE 

4753
02:56:41,720 --> 02:56:42,320
STATE MOVE TO THE NEXT.

4754
02:56:42,320 --> 02:56:44,120
--- 

4755
02:56:44,120 --> 02:56:44,680
THE TYPICAL BUDGET FOR THIS 

4756
02:56:44,680 --> 02:56:50,440
PROGRAM IS UP TO $250,000 IN 

4757
02:56:50,440 --> 02:56:51,360
DIRECT COSTS PER YEAR PER 

4758
02:56:51,360 --> 02:56:53,400
PROGRAM.

4759
02:56:53,400 --> 02:56:56,240
AND WE DO EXPECT THAT EACH 

4760
02:56:56,240 --> 02:56:56,840
PROGRAM, OR EACH APPLICATION 

4761
02:56:56,840 --> 02:56:58,920
THAT COMES IN, THAT THESE 

4762
02:56:58,920 --> 02:56:59,400
PROGRAMS ARE FOCUSED ON 

4763
02:56:59,400 --> 02:57:01,960
OUTLINING BOTH SHORT-TERM AND 

4764
02:57:01,960 --> 02:57:06,760
LONG-TERM OUTCOMES, AND BEING 

4765
02:57:06,760 --> 02:57:08,200
ABLE TO EVALUATE SOME 

4766
02:57:08,200 --> 02:57:09,280
SUCCESSES WHETHER THAT IS THE 

4767
02:57:09,280 --> 02:57:11,080
TYPE OF PRESENTATIONS, OTHER 

4768
02:57:11,080 --> 02:57:14,960
OPPORTUNITIES FOR NETWORKING, 

4769
02:57:14,960 --> 02:57:15,520
PUBLICATIONS, OPPORTUNITIES 

4770
02:57:15,520 --> 02:57:18,560
FOR GETTING MORE GRANTS AND 

4771
02:57:18,560 --> 02:57:19,160
THE ABILITY TO TRANSITION TO 

4772
02:57:19,160 --> 02:57:21,160
THE NEXT CAREER STAGE. SOME 

4773
02:57:21,160 --> 02:57:22,960
OF THESE PROGRAMS HAVE 

4774
02:57:22,960 --> 02:57:23,520
PUBLISHED ON THOSE OUTCOMES 

4775
02:57:23,520 --> 02:57:24,440
AND I AM HAPPY TO SHARE THE 

4776
02:57:24,440 --> 02:57:27,200
CITATIONS IN THE CHAT ONCE 

4777
02:57:27,200 --> 02:57:28,160
THIS IS OVER. 

4778
02:57:28,160 --> 02:57:29,880
--- 

4779
02:57:29,880 --> 02:57:31,920
THAT IS ALL I HAVE. 

4780
02:57:31,920 --> 02:57:32,400
I AM HAPPY TO TAKE ANY 

4781
02:57:32,400 --> 02:57:33,560
QUESTIONS. 

4782
02:57:33,560 --> 02:57:35,680
>> DR. FINKELSTEIN: 

4783
02:57:35,680 --> 02:57:40,360
YOU CAN TAKE DOWN THE SLIDE. 

4784
02:57:40,360 --> 02:57:40,880
ANY QUESTIONS OR COMMENTS 

4785
02:57:40,880 --> 02:57:41,880
ABOUT THIS ONE?

4786
02:57:41,880 --> 02:57:47,960
-- -- 

4787
02:57:47,960 --> 02:57:50,680
GINA?

4788
02:57:50,680 --> 02:57:51,480
>> I WANT TO SAY THAT THIS
IS 

4789
02:57:51,480 --> 02:57:54,400
AN AWESOME EFFORT AND IT'S 

4790
02:57:54,400 --> 02:57:59,920
DONE SO MUCH. 

4791
02:57:59,920 --> 02:58:00,480
THERE ARE HUNDREDS OF PEOPLE 

4792
02:58:00,480 --> 02:58:07,360
WHO ARE ALUMNI OF THIS WHO 

4793
02:58:07,360 --> 02:58:08,240
ARE BENEFITING FROM THESE 

4794
02:58:08,240 --> 02:58:08,840
PROGRAMS IN THE PAST, AND IN 

4795
02:58:08,840 --> 02:58:09,880
FACT I AM CURRENTLY ON A ZOOM 

4796
02:58:09,880 --> 02:58:16,200
CALL WITH THE INCOMING NSP 

4797
02:58:16,200 --> 02:58:20,520
PROGRAM FELLOWS AND I WANT TO 

4798
02:58:20,520 --> 02:58:21,280
SAY THERE IS SO MUCH 

4799
02:58:21,280 --> 02:58:21,800
ENTHUSIASM. IT IS REALLY 

4800
02:58:21,800 --> 02:58:23,120
HELPFUL AND SO GLAD IT IS 

4801
02:58:23,120 --> 02:58:25,160
EXPANDING TO OTHER 

4802
02:58:25,160 --> 02:58:27,200
INSTITUTIONS AND I HOPE IT 

4803
02:58:27,200 --> 02:58:33,600
CAN EXPAND EVEN MORE AND TO 

4804
02:58:33,600 --> 02:58:35,760
UNDERGRADUATES, POSTDOCS, IT 

4805
02:58:35,760 --> 02:58:37,200
CAN EXPAND EVEN MORE. 

4806
02:58:37,200 --> 02:58:40,640
THANK YOU FOR THIS WORK. 

4807
02:58:40,640 --> 02:58:43,840
>> THANK YOU GINA FOR
MAKING 

4808
02:58:43,840 --> 02:58:44,360
THIS IMPORTANT FUNDING 

4809
02:58:44,360 --> 02:58:44,960
OPPORTUNITY THAT WE ARE ABLE 

4810
02:58:44,960 --> 02:58:47,040
TO PROVIDE. YOU CERTAINLY ARE 

4811
02:58:47,040 --> 02:58:47,680
ONE OF OUR HEROES IN MAKING 

4812
02:58:47,680 --> 02:58:51,680
THESE SORTS OF COMMUNITY 

4813
02:58:51,680 --> 02:58:52,480
COHORTS SO IMPORTANT. 

4814
02:58:52,480 --> 02:58:55,840
>> DR. FINKELSTEIN: KEEP
IN 

4815
02:58:55,840 --> 02:58:56,640
MIND THAT THIS IS JUST ONE OF 

4816
02:58:56,640 --> 02:58:57,560
A TREMENDOUS SUITE OF 

4817
02:58:57,560 --> 02:58:59,520
PROGRAMS THAT COMES OUT OF 

4818
02:58:59,520 --> 02:59:01,200
MICHELLE'S OFFICE. MARGUERITE 

4819
02:59:01,200 --> 02:59:04,000
AND LAUREN ARE RESPONSIBLE 

4820
02:59:04,000 --> 02:59:06,640
FOR THEM AND OTHERS.

4821
02:59:06,640 --> 02:59:09,560
I AM GOING TO SAVE THE VOTE 

4822
02:59:09,560 --> 02:59:11,160
TO THE END. 

4823
02:59:11,160 --> 02:59:14,600
--- 

4824
02:59:14,600 --> 02:59:15,320
THE NEXT CONCEPT IS ABOUT THE 

4825
02:59:15,320 --> 02:59:16,880
SUDDEN DEATH IN YOUNG 

4826
02:59:16,880 --> 02:59:24,120
REGISTRY. VICKY IS GOING TO 

4827
02:59:24,120 --> 02:59:24,680
TALK MORE ABOUT THIS THE 

4828
02:59:24,680 --> 02:59:25,160
PROGRAM DIRECTOR AND A 

4829
02:59:25,160 --> 02:59:25,880
CHANNEL SYNOPSIS CLUSTER. 

4830
02:59:25,880 --> 02:59:26,800
THERE SHE IS. 

4831
02:59:26,800 --> 02:59:29,200
>> I'M SHARING MY SCREEN 

4832
02:59:29,200 --> 02:59:30,160
HERE. 

4833
02:59:30,160 --> 02:59:40,560
>> DR. FINKELSTEIN: OKAY. 

4834
02:59:41,720 --> 02:59:46,280
>> THANK YOU BOB.  SO THE 

4835
02:59:46,280 --> 02:59:48,360
SUDDEN DEATH IN YOUNG CASE 

4836
02:59:48,360 --> 02:59:48,920
REGISTRY IS A RENEWAL OF A 

4837
02:59:48,920 --> 02:59:54,320
PROGRAM THAT THE NINDS HAS 

4838
02:59:54,320 --> 02:59:56,400
BEEN SUPPORTING SINCE 2015 

4839
02:59:56,400 --> 02:59:57,440
AND TO GIVE YOU SOME 

4840
02:59:57,440 --> 03:00:00,320
BACKGROUND THIS IS THE ONLY 

4841
03:00:00,320 --> 03:00:00,920
POPULATION-BASED SURVEILLANCE 

4842
03:00:00,920 --> 03:00:03,160
REGISTRY FOR SUDDEN DEATH IN 

4843
03:00:03,160 --> 03:00:03,720
THE UNITED STATES AND THE 

4844
03:00:03,720 --> 03:00:04,320
CASE ASCERTAINMENT IS CARRIED 

4845
03:00:04,320 --> 03:00:06,840
OUT BY STATE, LOCAL PUBLIC 

4846
03:00:06,840 --> 03:00:10,800
HEALTH OFFICES WORKING 

4847
03:00:10,800 --> 03:00:12,200
TOGETHER WITH CORNERS OR 

4848
03:00:12,200 --> 03:00:12,800
MEDICAL EXAMINERS AND WE ARE 

4849
03:00:12,800 --> 03:00:14,200
CURRENTLY FUNDING 13 STATES 

4850
03:00:14,200 --> 03:00:15,480
OR JURISDICTIONS MANY 

4851
03:00:15,480 --> 03:00:16,080
TYPICALLY COUNTIES OR REGIONS 

4852
03:00:16,080 --> 03:00:20,400
OF THE STATE, IF IT IS NOT 

4853
03:00:20,400 --> 03:00:21,520
THE ENTIRE STATE.

4854
03:00:21,520 --> 03:00:24,040
AND THE REGISTER UTILIZES THE 

4855
03:00:24,040 --> 03:00:24,600
EXISTING SUDDEN, UNEXPECTED 

4856
03:00:24,600 --> 03:00:27,160
INFANT DEATH INFRASTRUCTURE 

4857
03:00:27,160 --> 03:00:27,960
THAT HAS BEEN PUT IN PLACE 

4858
03:00:27,960 --> 03:00:28,520
AND RUN THROUGH THE CDC AS 

4859
03:00:28,520 --> 03:00:32,560
WELL AS STATE/CHILD DEATH 

4860
03:00:32,560 --> 03:00:39,800
REVIEW PANELS AND THEY 

4861
03:00:39,800 --> 03:00:40,360
COLLECT BIO SPECIMENS AND 

4862
03:00:40,360 --> 03:00:40,880
INFORMATION ABOUT MEDICAL 

4863
03:00:40,880 --> 03:00:41,480
HISTORY OF THE CHILD AND THE 

4864
03:00:41,480 --> 03:00:42,080
CAUSE AND MANNER OF DEATH OF 

4865
03:00:42,080 --> 03:00:43,760
SUDDEN DEATH UP UNTIL THE AGE 

4866
03:00:43,760 --> 03:00:44,560
20, DEPENDING ON THE STATE.

4867
03:00:44,560 --> 03:00:47,880
--- 

4868
03:00:47,880 --> 03:00:48,520
THE GOALS ARE TO UNDERSTAND 

4869
03:00:48,520 --> 03:00:49,000
THE CAUSES AND RISKS OF 

4870
03:00:49,000 --> 03:00:50,480
SUDDEN DEATH, SPECIFICALLY OF 

4871
03:00:50,480 --> 03:00:52,920
INTEREST TO NINDS 'S SUDDEN 

4872
03:00:52,920 --> 03:00:54,960
UNEXPECTED DEATH IN EPILEPSY 

4873
03:00:54,960 --> 03:00:58,840
OR SUDEP, ALTHOUGH THERE ARE 

4874
03:00:58,840 --> 03:00:59,960
ADDITIONAL NEUROLOGICAL 

4875
03:00:59,960 --> 03:01:00,560
CAUSES THAT ARE COLLECTED IN 

4876
03:01:00,560 --> 03:01:07,360
THESE CASES AND FOR NHLBI, 

4877
03:01:07,360 --> 03:01:07,840
THEY'RE INTERESTED IN 

4878
03:01:07,840 --> 03:01:08,400
COLLECTING CASES OF SUDDEN 

4879
03:01:08,400 --> 03:01:08,880
CARDIAC DEATH.

4880
03:01:08,880 --> 03:01:16,760
--- 

4881
03:01:16,760 --> 03:01:17,200
ONE OF THE GOALS IS TO 

4882
03:01:17,200 --> 03:01:17,800
PROVIDE BIOSPECIMENS AND DATA 

4883
03:01:17,800 --> 03:01:18,280
TO INVESTIGATORS FOR 

4884
03:01:18,280 --> 03:01:20,280
ADDITIONAL RESEARCH, AND 

4885
03:01:20,280 --> 03:01:20,840
SUPPORT APPLICATIONS COMING 

4886
03:01:20,840 --> 03:01:23,400
INTO UTILIZE THE DATA IN THE 

4887
03:01:23,400 --> 03:01:24,520
REGISTRY AS WELL AS IN THE 

4888
03:01:24,520 --> 03:01:26,880
BIO SPECIMENS AND MOST 

4889
03:01:26,880 --> 03:01:27,480
IMPORTANTLY TO INFORM WAYS TO 

4890
03:01:27,480 --> 03:01:28,040
PREVENT THESE DEATHS IN THE 

4891
03:01:28,040 --> 03:01:28,440
FUTURE.

4892
03:01:28,440 --> 03:01:30,120
--- 

4893
03:01:30,120 --> 03:01:32,280
SO TO TALK ABOUT THIS REALLY 

4894
03:01:32,280 --> 03:01:34,880
UNIQUE INTRA-AGENCY 

4895
03:01:34,880 --> 03:01:39,280
COLLABORATION, IT'S FUNDED 

4896
03:01:39,280 --> 03:01:42,800
PRIMARILY BY NHLBI THAT PUTS 

4897
03:01:42,800 --> 03:01:43,320
INTO AND HAVE MILLION PER 

4898
03:01:43,320 --> 03:01:43,920
YEAR TO SUPPORT THIS PROGRAM 

4899
03:01:43,920 --> 03:01:45,800
BY NINDS AND THE >> CINDY 

4900
03:01:45,800 --> 03:01:49,760
DAVIS:

4901
03:01:49,760 --> 03:01:53,000
(CORRECTION) CDC. 

4902
03:01:53,000 --> 03:01:57,160
WHO ISSUES NOTICES TO THE 

4903
03:01:57,160 --> 03:02:00,200
PUBLIC HEALTH OFFICES FUNDED 

4904
03:02:00,200 --> 03:02:00,840
IN THEIR AREA AND THERE IS A 

4905
03:02:00,840 --> 03:02:02,560
COORDINATING CENTER CURRENTLY 

4906
03:02:02,560 --> 03:02:06,000
FUNDED AT NPHI IN MICHIGAN 

4907
03:02:06,000 --> 03:02:08,080
AND A REPOSITORY THAT IS AT 

4908
03:02:08,080 --> 03:02:08,640
THE UNIVERSITY OF MICHIGAN 

4909
03:02:08,640 --> 03:02:19,120
AND AN NHLBI-FUNDED RESEARCH 

4910
03:02:20,000 --> 03:02:20,520
TO SUPPORT ANALYSIS OF SOME 

4911
03:02:20,520 --> 03:02:21,120
OF THE BUYER SPECIMEN'S AND I 

4912
03:02:21,120 --> 03:02:21,720
WILL TALK ABOUT THAT IN THE 

4913
03:02:21,720 --> 03:02:26,680
NEXT SLIDE. IT HAS BEEN A 

4914
03:02:26,680 --> 03:02:27,280
VERY FRUITFUL AND FUN PROJECT 

4915
03:02:27,280 --> 03:02:28,760
TO WORK ON TOGETHER WITH MY 

4916
03:02:28,760 --> 03:02:30,040
COLLEAGUES ACROSS THE 

4917
03:02:30,040 --> 03:02:33,600
DIFFERENT AGENCIES, , ACROSS 

4918
03:02:33,600 --> 03:02:34,320
THE PUBLIC HEALTH OFFICES AS 

4919
03:02:34,320 --> 03:02:35,000
WELL AS THE INVESTIGATORS.

4920
03:02:35,000 --> 03:02:36,160
--- 

4921
03:02:36,160 --> 03:02:39,800
AS I SAID THE FUNDING AND 

4922
03:02:39,800 --> 03:02:40,320
CASE ASCERTAINMENT BEGAN 

4923
03:02:40,320 --> 03:02:45,880
JANUARY 2015.

4924
03:02:45,880 --> 03:02:46,320
AND 4,955 CASES OF BEEN 

4925
03:02:46,320 --> 03:02:52,120
IDENTIFY TODAY. ABOUT 70% OF 

4926
03:02:52,120 --> 03:02:52,680
THE CASE THAT WE COLLECTED 

4927
03:02:52,680 --> 03:02:53,240
OUR CHILDREN THAT ARE LESS 

4928
03:02:53,240 --> 03:02:54,960
THAN ONE YEAR OF AGE.  THE 

4929
03:02:54,960 --> 03:02:57,880
AVERAGE NUMBER OF SUDEP CASES 

4930
03:02:57,880 --> 03:03:02,360
FOR YEARS ABOUT 4% OR ABOUT 

4931
03:03:02,360 --> 03:03:04,880
30 CASES PER YEAR ON AVERAGE. 

4932
03:03:04,880 --> 03:03:08,560
ONE OF THE INTERESTING THINGS 

4933
03:03:08,560 --> 03:03:09,000
WE HAVE SEEN IN THE 

4934
03:03:09,000 --> 03:03:09,560
DAY-TO-DAY-- ANSWERS REALLY 

4935
03:03:09,560 --> 03:03:10,120
ONLY FROM A COUPLE OF YEARS 

4936
03:03:10,120 --> 03:03:10,960
OF ANALYSIS AND WE ARE NOW 

4937
03:03:10,960 --> 03:03:12,160
ANALYZING MORE OF THE DATA-- 

4938
03:03:12,160 --> 03:03:13,080
IS THAT THE OVERALL INCIDENCE 

4939
03:03:13,080 --> 03:03:21,520
OF SUDEP IS 0.26 CASES PER 

4940
03:03:21,520 --> 03:03:22,640
100,000 INFANTS AND CHILDREN 

4941
03:03:22,640 --> 03:03:23,200
WHICH IS HIGHER THAN WAS IN 

4942
03:03:23,200 --> 03:03:24,480
THE LITERATURE. 

4943
03:03:24,480 --> 03:03:26,400
AND THE INCIDENCE IS ACTUALLY 

4944
03:03:26,400 --> 03:03:29,040
HIGHER IN NONWHITES (BLACKS 

4945
03:03:29,040 --> 03:03:30,800
AND OTHER POPULATIONS) THAN 

4946
03:03:30,800 --> 03:03:40,280
IN THE WHITE CHILDREN. NHLBI 

4947
03:03:40,280 --> 03:03:40,720
FUNDED WHOLE GENOME 

4948
03:03:40,720 --> 03:03:46,600
SEQUENCING ON 211  CONTENTED 

4949
03:03:46,600 --> 03:03:48,520
VICE PRESIDENT DATA TO BE 

4950
03:03:48,520 --> 03:03:53,360
DEPOSITED IN THE DBGAP. 

4951
03:03:53,360 --> 03:03:53,800
 PATHOGENIC OR LIKELY 

4952
03:03:53,800 --> 03:03:54,560
PATHOGENIC PARENTS WERE 

4953
03:03:54,560 --> 03:03:58,520
IDENTIFIED AND ONLY 6% OF THE 

4954
03:03:58,520 --> 03:04:04,120
COHORT OF THE SDY COHORT.

4955
03:04:04,120 --> 03:04:04,680
EPILEPSY AND CARDIAC DAMAGE 

4956
03:04:04,680 --> 03:04:05,760
AND VARIANCE ARE ENRICHED IN 

4957
03:04:05,760 --> 03:04:09,800
THE SDY COHORT. 

4958
03:04:09,800 --> 03:04:11,400
INCREASING NUMBER OF RARE 

4959
03:04:11,400 --> 03:04:13,680
EPILEPSY, BUT NOT CARDIAC 

4960
03:04:13,680 --> 03:04:14,200
VARIANCE, CORRELATES WITH 

4961
03:04:14,200 --> 03:04:19,080
YOUNGER AGE AT DEATH.

4962
03:04:19,080 --> 03:04:19,600
 EPAULETS OF JEAN BURTON 

4963
03:04:19,600 --> 03:04:20,480
APPEARS TO PLAY A ROLE IN THE 

4964
03:04:20,480 --> 03:04:21,080
PATHOGENESIS OF SUDDEN DEATH 

4965
03:04:21,080 --> 03:04:22,440
IN THE YOUNG.

4966
03:04:22,440 --> 03:04:23,000
AND WE ARE ANALYZING WHETHER 

4967
03:04:23,000 --> 03:04:25,240
THESE CHILDREN HAD A 

4968
03:04:25,240 --> 03:04:25,840
DIAGNOSIS OF EPILEPSY AT THE 

4969
03:04:25,840 --> 03:04:28,720
TIME OF THEIR DEATH AND IN 

4970
03:04:28,720 --> 03:04:29,280
TALKING WITH SOME OF THE 

4971
03:04:29,280 --> 03:04:29,880
PUBLIC HEALTH STAFF THAT ARE 

4972
03:04:29,880 --> 03:04:30,320
PART OF SOME OF THE 

4973
03:04:30,320 --> 03:04:31,720
JURISDICTIONS THAT ARE 

4974
03:04:31,720 --> 03:04:32,320
PARTICIPATING, SOME OF THE 

4975
03:04:32,320 --> 03:04:40,960
CHILDREN DID HAVE A 

4976
03:04:40,960 --> 03:04:41,400
DIAGNOSIS, AN INITIAL 

4977
03:04:41,400 --> 03:04:42,000
DIAGNOSIS, BUT MANY OF THE 

4978
03:04:42,000 --> 03:04:44,320
CHILDREN NEVER RETURNED TO 

4979
03:04:44,320 --> 03:04:44,840
HER NEUROLOGY SO THEY MAY 

4980
03:04:44,840 --> 03:04:49,040
HAVE HAD A DIAGNOSIS AND PUT 

4981
03:04:49,040 --> 03:04:51,440
ON MEDICATION BUT THERE WAS 

4982
03:04:51,440 --> 03:04:52,040
NO FOLLOW-UP, THE FAMILY DID 

4983
03:04:52,040 --> 03:04:52,480
NOT FOLLOW-UP.

4984
03:04:52,480 --> 03:04:53,920
--- 

4985
03:04:53,920 --> 03:04:54,440
THERE'S ALSO A NUMBER OF 

4986
03:04:54,440 --> 03:04:55,040
CASES WHERE THE CHILDREN HAD 

4987
03:04:55,040 --> 03:05:01,400
MUTATIONS IN SCN 1A, A FAIRLY 

4988
03:05:01,400 --> 03:05:03,480
COMMON RARE GENETIC EPILEPSY 

4989
03:05:03,480 --> 03:05:05,960
WHICH THEY DID NOT KNOW THAT 

4990
03:05:05,960 --> 03:05:09,160
THE CHILD HAD THAT SYNDROME.

4991
03:05:09,160 --> 03:05:09,760
SO THERE IS REALLY A NEED FOR 

4992
03:05:09,760 --> 03:05:11,960
ONGOING RESEARCH IN THIS AREA 

4993
03:05:11,960 --> 03:05:15,080
AND SO WE ARE RECOMMENDING 

4994
03:05:15,080 --> 03:05:17,560
CONTINUED FUNDING FOR CASE 

4995
03:05:17,560 --> 03:05:18,120
ASCERTAINMENT, AND WHAT WE 

4996
03:05:18,120 --> 03:05:20,280
ARE ADDING AND WOULD LIKE TO 

4997
03:05:20,280 --> 03:05:20,840
ADD IS INCREASED FUNDING TO 

4998
03:05:20,840 --> 03:05:23,360
EXPAND BIO SPECIMEN 

4999
03:05:23,360 --> 03:05:24,240
COLLECTION AT THE TIME OF 

5000
03:05:24,240 --> 03:05:24,720
AUTOPSY INCLUDING BRAIN 

5001
03:05:24,720 --> 03:05:28,240
COLLECTION UTILIZING THE NIH 

5002
03:05:28,240 --> 03:05:30,920
NEURAL BIO BANK SO WE CAN 

5003
03:05:30,920 --> 03:05:34,520
EXPAND SUDEP RESEARCH AND 

5004
03:05:34,520 --> 03:05:35,200
RESOURCES FOR INVESTIGATORS.

5005
03:05:35,200 --> 03:05:35,880
--- 

5006
03:05:35,880 --> 03:05:40,360
AS ANOTHER COMMENT, NINDS IS 

5007
03:05:40,360 --> 03:05:40,960
CURRENTLY FUNDING ABOUT $9 

5008
03:05:40,960 --> 03:05:48,080
MILLION IN RESEARCH ON SUDEP 

5009
03:05:48,080 --> 03:05:48,520
WHICH WE ARE MAKING 

5010
03:05:48,520 --> 03:05:49,040
SIGNIFICANT PROGRESS BUT 

5011
03:05:49,040 --> 03:05:50,040
HAVING ACCESS TO BRAIN TISSUE 

5012
03:05:50,040 --> 03:05:52,400
WOULD BE REALLY QUITE 

5013
03:05:52,400 --> 03:05:52,960
VALUABLE FOR OUR ONGOING 

5014
03:05:52,960 --> 03:05:56,840
RESEARCH IN THIS AREA.  I 

5015
03:05:56,840 --> 03:05:57,360
WILL STOP THERE AND I AM 

5016
03:05:57,360 --> 03:05:57,920
HAPPY TO TAKE ANY QUESTIONS 

5017
03:05:57,920 --> 03:05:58,480
ANYONE MIGHT HAVE. 

5018
03:05:58,480 --> 03:05:59,800
>> DR. FINKELSTEIN: THANKS
A 

5019
03:05:59,800 --> 03:06:03,280
LOT VICKY. 

5020
03:06:03,280 --> 03:06:05,680
ANY QUESTIONS ABOUT THIS?

5021
03:06:05,680 --> 03:06:07,960
-- -- 

5022
03:06:07,960 --> 03:06:09,120
OKAY.

5023
03:06:09,120 --> 03:06:13,600
I GUESS-- I'M ONLY SEEING IN 

5024
03:06:13,600 --> 03:06:15,640
MY SCREEN THE COUNCILMEMBERS 

5025
03:06:15,640 --> 03:06:16,240
WHO HAVE THEIR CAMERAS ON AND 

5026
03:06:16,240 --> 03:06:17,360
I AM ASSUMING THERE ARE 

5027
03:06:17,360 --> 03:06:22,240
OTHERS WHO DON'T. 

5028
03:06:22,240 --> 03:06:24,200
SO, WHY DON'T WE GO AHEAD TO 

5029
03:06:24,200 --> 03:06:27,320
THE LAST CONCEPT BEING 

5030
03:06:27,320 --> 03:06:28,520
PRESENTED.

5031
03:06:28,520 --> 03:06:30,600
DAN MILLER, THIS IS ONE FROM 

5032
03:06:30,600 --> 03:06:33,880
THE NIH BLUEPRINT. 

5033
03:06:33,880 --> 03:06:35,360
>> HELLO EVERYONE. I'M 

5034
03:06:35,360 --> 03:06:38,800
SHARING. 

5035
03:06:38,800 --> 03:06:41,240
AM I SHARING THE CORRECT 

5036
03:06:41,240 --> 03:06:42,120
SCREEN?

5037
03:06:42,120 --> 03:06:43,600
>> DR. FINKELSTEIN: NOT 

5038
03:06:43,600 --> 03:06:46,280
QUITE. 

5039
03:06:46,280 --> 03:06:47,760
YOU ARE JUST SHARING A 

5040
03:06:47,760 --> 03:06:50,080
MONDRIAN WALL. 

5041
03:06:50,080 --> 03:06:51,360
>> IS THAT IN THE RIGHT 

5042
03:06:51,360 --> 03:06:51,760
FORMAT?

5043
03:06:51,760 --> 03:06:54,160
>> NO, IT'S THE WRONG ONE.

5044
03:06:54,160 --> 03:06:55,800
>> DR. FINKELSTEIN: NOT
THE 

5045
03:06:55,800 --> 03:06:58,520
FULL SCREEN. 

5046
03:06:58,520 --> 03:06:59,360
>> IS THAT FULL-SCREEN?

5047
03:06:59,360 --> 03:07:03,640
>> DR. FINKELSTEIN: YES,
IT 

5048
03:07:03,640 --> 03:07:06,600
IS KIND OF A BLANK SLIDE. 

5049
03:07:06,600 --> 03:07:09,280
>> THAT IS ALL THAT IS.

5050
03:07:09,280 --> 03:07:09,840
I HAVE ONE SLIDE AND I WILL 

5051
03:07:09,840 --> 03:07:15,400
FILL IT IN. THANKS EVERYONE. 

5052
03:07:15,400 --> 03:07:16,800
THIS SHOULD BE FAIRLY BRIEF.

5053
03:07:16,800 --> 03:07:18,160
IT IS A CONCEPT DEVELOPED BY 

5054
03:07:18,160 --> 03:07:24,160
THE NIH BLUEPRINT SINGLE CELL 

5055
03:07:24,160 --> 03:07:24,640
TEAM  TO SUPPORT JOINT 

5056
03:07:24,640 --> 03:07:25,560
RESEARCH FOR HUMAN SINGLE 

5057
03:07:25,560 --> 03:07:30,000
CELL OMIX DATA FROM BRAIN AND 

5058
03:07:30,000 --> 03:07:34,000
BLUEPRINT ICS. I AM NOT 

5059
03:07:34,000 --> 03:07:36,080
ENTIRELY SURE HOW MUCH 

5060
03:07:36,080 --> 03:07:36,680
CONCURRENCE WE NEED SINCE IT 

5061
03:07:36,680 --> 03:07:37,240
IS A PROPOSAL TO SPEND BLUE 

5062
03:07:37,240 --> 03:07:38,640
PRINT MONEY AND THERE HAVE 

5063
03:07:38,640 --> 03:07:39,160
BEEN MULTIPLE LEVELS OF 

5064
03:07:39,160 --> 03:07:43,320
VETTING ON THIS AND THE IC 

5065
03:07:43,320 --> 03:07:45,480
DIRECTORS OF ALL APPROVED IT, 

5066
03:07:45,480 --> 03:07:48,520
BUT WE REALLY DO WANT YOU TO 

5067
03:07:48,520 --> 03:07:49,120
KNOW ABOUT IT. AND WE WOULD 

5068
03:07:49,120 --> 03:07:49,880
LOVE TO HAVE YOUR INPUT ON IT.

5069
03:07:49,880 --> 03:07:50,880
--- 

5070
03:07:50,880 --> 03:07:58,320
SO WE CONDUCTED-- AN ELASTIC 

5071
03:07:58,320 --> 03:07:58,880
ANALYSIS OF THE MONEY BEING 

5072
03:07:58,880 --> 03:08:03,800
SPENT AT NIH ON HUMAN SINGLE 

5073
03:08:03,800 --> 03:08:08,600
CELL OMICS WORK. 

5074
03:08:08,600 --> 03:08:09,320
YOU CAN SEE THAT IT'S RISING 

5075
03:08:09,320 --> 03:08:13,800
FAIRLY RAPIDLY. 

5076
03:08:13,800 --> 03:08:18,680
MAY BE EXPONENTIALLY.

5077
03:08:18,680 --> 03:08:19,280
THE BLUE CHUNKS OF THE BARS 

5078
03:08:19,280 --> 03:08:20,760
ARE WORKING SUPPORTED AT THE 

5079
03:08:20,760 --> 03:08:23,440
ICS. 

5080
03:08:23,440 --> 03:08:24,480
SINCE IT IS SENSITIVE HUMAN 

5081
03:08:24,480 --> 03:08:26,960
BRAIN OMICS WORK, THIS IS 

5082
03:08:26,960 --> 03:08:30,280
LARGELY BLUEPRINT ICS. 

5083
03:08:30,280 --> 03:08:35,240
AND THEN THE-- AND LARGELY 

5084
03:08:35,240 --> 03:08:42,440
DECEASED FOCUSED 

5085
03:08:42,440 --> 03:08:42,920
EXPERIMENTS-- AND THE 

5086
03:08:42,920 --> 03:08:44,240
NON-DARK BLUE BOXES ARE WHAT 

5087
03:08:44,240 --> 03:08:44,840
THE BRAIN INITIATIVE HAS BEEN 

5088
03:08:44,840 --> 03:08:45,320
SUPPORTING ESSENTIALLY 

5089
03:08:45,320 --> 03:08:49,560
BUILDING REFERENCE DATA SETS. 

5090
03:08:49,560 --> 03:08:50,080
AND SO THAT IS PRETTY MUCH 

5091
03:08:50,080 --> 03:08:56,680
EXCLUSIVELY WHAT WE CAN 

5092
03:08:56,680 --> 03:08:57,440
CONTROL, THE NEURO- TYPICAL 

5093
03:08:57,440 --> 03:08:59,360
TISSUE BEING USED.

5094
03:08:59,360 --> 03:09:00,520
AND I WANT TO POINT OUT THAT 

5095
03:09:00,520 --> 03:09:03,440
IN 2022, YOU PROBABLY ARE 

5096
03:09:03,440 --> 03:09:07,680
AWARE THAT BICAN (PHONETIC) 

5097
03:09:07,680 --> 03:09:11,240
IS COMING ON BOARD, A BIG 

5098
03:09:11,240 --> 03:09:12,200
KICKOFF OF THE HUMAN BRAIN 

5099
03:09:12,200 --> 03:09:13,480
CELL REGISTRY. 

5100
03:09:13,480 --> 03:09:14,040
IT WOULD ACTUALLY BE BIGGER 

5101
03:09:14,040 --> 03:09:22,240
THAN THE 2021 BAR JUST BICAN 

5102
03:09:22,240 --> 03:09:22,840
ALONE. SO THIS IS RISING AND 

5103
03:09:22,840 --> 03:09:23,400
RISING VERY RAPIDLY.

5104
03:09:23,400 --> 03:09:24,880
--- 

5105
03:09:24,880 --> 03:09:26,000
WHAT WE DID SEE IN THE 

5106
03:09:26,000 --> 03:09:36,040
ANALYSIS IS THAT THERE SEEMS 

5107
03:09:36,040 --> 03:09:36,640
TO BE A MISSING PIECE IN THIS 

5108
03:09:36,640 --> 03:09:37,800
ENVIRONMENT, AND EMPHASIS ON 

5109
03:09:37,800 --> 03:09:39,200
HARMONIZING THE DATA SET FOR 

5110
03:09:39,200 --> 03:09:40,720
JOINT ANALYSIS AND COMMON 

5111
03:09:40,720 --> 03:09:43,720
STORAGE AND SHARING OF BOTH 

5112
03:09:43,720 --> 03:09:44,800
DISEASE AND CONTROL DATA 

5113
03:09:44,800 --> 03:09:50,800
SETS. I APOLOGIZE, OF 

5114
03:09:50,800 --> 03:09:51,360
COURSE-- AS TO COME BY AND 

5115
03:09:51,360 --> 03:09:53,680
THE BLUEPRINT SAW THIS AS AN 

5116
03:09:53,680 --> 03:09:56,400
OPPORTUNITY FOR MODERATE 

5117
03:09:56,400 --> 03:09:57,000
AMOUNTS OF BLUEPRINT MONEY TO 

5118
03:09:57,000 --> 03:09:58,520
MAKE SOMETHING OF A 

5119
03:09:58,520 --> 03:09:59,760
DIFFERENCE IN THIS MASSIVE 

5120
03:09:59,760 --> 03:10:00,520
INVESTMENT THAT NIH IS 

5121
03:10:00,520 --> 03:10:01,960
UNDERTAKING BOTH AT THE IC 

5122
03:10:01,960 --> 03:10:04,920
LEVEL AND IN THE BRAIN. 

5123
03:10:04,920 --> 03:10:07,800
--- 

5124
03:10:07,800 --> 03:10:11,080
SO WHAT WE CAME UP WITH IS 

5125
03:10:11,080 --> 03:10:11,640
ESSENTIALLY  AN INITIATIVE 

5126
03:10:11,640 --> 03:10:12,240
THAT WE HOPE WILL HELP LAUNCH 

5127
03:10:12,240 --> 03:10:12,760
HARMONIZATION AND JOINT 

5128
03:10:12,760 --> 03:10:16,880
STORAGE OF BRAIN AND IC DRIVE 

5129
03:10:16,880 --> 03:10:21,040
TO DATA SETS. 

5130
03:10:21,040 --> 03:10:21,520
THIS IS NOT IN SEQUENTIAL 

5131
03:10:21,520 --> 03:10:24,880
ORDER NECESSARILY, BY 

5132
03:10:24,880 --> 03:10:27,000
LAUNCHING SOME PILOT PROJECTS 

5133
03:10:27,000 --> 03:10:28,440
THAT SORT OF PILOT THE JOINT 

5134
03:10:28,440 --> 03:10:32,200
ANALYSIS AND STORAGE OF THESE 

5135
03:10:32,200 --> 03:10:32,760
DATA SETS. WE WOULD LOVE TO 

5136
03:10:32,760 --> 03:10:33,320
SUPPLEMENT ONGOING DISEASE 

5137
03:10:33,320 --> 03:10:34,280
FOCUSED EFFORTS AND ONGOING 

5138
03:10:34,280 --> 03:10:38,960
BRAIN INITIATIVE EFFORTS TO 

5139
03:10:38,960 --> 03:10:40,760
INCLUDE THE OTHER DATA SETS 

5140
03:10:40,760 --> 03:10:42,440
IN THE FINAL ANALYSIS AND WE 

5141
03:10:42,440 --> 03:10:43,040
WOULD LIKE TO SUPPLEMENT DATA 

5142
03:10:43,040 --> 03:10:45,240
ARCHIVES TO INGEST THIS JOINT 

5143
03:10:45,240 --> 03:10:48,720
DATA AND TO HELP US HARMONIZE 

5144
03:10:48,720 --> 03:10:49,280
AND SHARE IT AS HARMONIZED 

5145
03:10:49,280 --> 03:10:49,680
DATA SETS.

5146
03:10:49,680 --> 03:10:51,880
--- 

5147
03:10:51,880 --> 03:10:52,400
WE WANT TO CONVENE THE 

5148
03:10:52,400 --> 03:10:52,960
AWARDEES OF THESE PUBLIC 

5149
03:10:52,960 --> 03:11:00,440
PROJECTS AND BRAIN- 

5150
03:11:00,440 --> 03:11:00,840
INITIATIVE FUNDED 

5151
03:11:00,840 --> 03:11:01,360
INVESTIGATORS AS WELL AS 

5152
03:11:01,360 --> 03:11:01,960
DECEASED FOCUS PEOPLE INTO A 

5153
03:11:01,960 --> 03:11:03,160
WORKSHOP AND HEAR BACK ABOUT 

5154
03:11:03,160 --> 03:11:05,960
WHAT SUCCESSES ARE OF THIS 

5155
03:11:05,960 --> 03:11:06,560
KIND OF HARMONIZATION EFFORT 

5156
03:11:06,560 --> 03:11:12,000
AND JOINT ANALYSIS EFFORT BUT 

5157
03:11:12,000 --> 03:11:16,400
ALSO WHAT THE CHALLENGES ARE. 

5158
03:11:16,400 --> 03:11:17,000
THE  KIND OF HARMONIZATION OF 

5159
03:11:17,000 --> 03:11:17,600
DATA THAT WAS NEVER BUILT TO 

5160
03:11:17,600 --> 03:11:19,560
BE UNLESS TOGETHER 

5161
03:11:19,560 --> 03:11:20,200
UNFORTUNATELY. AND ESTABLISH 

5162
03:11:20,200 --> 03:11:20,920
SOME COMMON DATA STANDARDS.

5163
03:11:20,920 --> 03:11:23,440
--- 

5164
03:11:23,440 --> 03:11:24,440
AND FINALLY WE WOULD LIKE TO 

5165
03:11:24,440 --> 03:11:25,000
FOLLOW THAT UP WITH SOME 

5166
03:11:25,000 --> 03:11:33,480
LARGER PHASE  THAT FUNDS 

5167
03:11:33,480 --> 03:11:36,480
JOINT ANALYSIS OF BRAIN AND 

5168
03:11:36,480 --> 03:11:37,080
IC DATA SETS BASED ON LESSONS 

5169
03:11:37,080 --> 03:11:37,640
LEARNED FROM THE WORKSHOP, 

5170
03:11:37,640 --> 03:11:38,200
AND USING THE STANDARD THAT 

5171
03:11:38,200 --> 03:11:40,920
WE GET ADVICE FROM THE 

5172
03:11:40,920 --> 03:11:43,480
WORKSHOP; WE ENVISION THIS AS 

5173
03:11:43,480 --> 03:11:44,000
AN INITIATIVE THAT IS NOT 

5174
03:11:44,000 --> 03:11:45,880
HUGE BUT GETS IS GOING 

5175
03:11:45,880 --> 03:11:46,440
TOWARDS PULLING THESE DATA 

5176
03:11:46,440 --> 03:11:47,560
SETS TOGETHER. 

5177
03:11:47,560 --> 03:11:48,920
--- 

5178
03:11:48,920 --> 03:11:55,000
I WILL BE HAPPY--  I NEED TO 

5179
03:11:55,000 --> 03:11:56,400
ACKNOWLEDGE THE TEAM AND 

5180
03:11:56,400 --> 03:11:56,880
HIGHLIGHTING THE PEOPLE 

5181
03:11:56,880 --> 03:11:57,440
REALLY INVOLVED IN PUTTING 

5182
03:11:57,440 --> 03:11:58,040
THIS TOGETHER. I AM HAPPY TO 

5183
03:11:58,040 --> 03:11:58,560
STOP SHARING AND TAKE 

5184
03:11:58,560 --> 03:11:59,000
QUESTIONS. 

5185
03:11:59,000 --> 03:12:00,840
>> DR. FINKELSTEIN: WAIT A

5186
03:12:00,840 --> 03:12:01,960
SECOND THERE WAS A SECOND 

5187
03:12:01,960 --> 03:12:04,040
SLIDE THERE!

5188
03:12:04,040 --> 03:12:06,000
>> I APOLOGIZE.

5189
03:12:06,000 --> 03:12:08,280
>> DR. FINKELSTEIN: ANY 

5190
03:12:08,280 --> 03:12:13,760
QUESTIONS?

5191
03:12:13,760 --> 03:12:18,080
CLAUDIA I THINK YOU ARE MUTED.

5192
03:12:18,080 --> 03:12:19,520
YOU ARE NOT SHOWN AS MUTED 

5193
03:12:19,520 --> 03:12:20,160
BUT FOR SOME REASON WE CANNOT 

5194
03:12:20,160 --> 03:12:20,560
HEAR YOU. 

5195
03:12:20,560 --> 03:12:23,720
F>> HOW ABOUT NOW?

5196
03:12:23,720 --> 03:12:25,280
SORRY ABOUT THAT.

5197
03:12:25,280 --> 03:12:26,960
SO THANK YOU.

5198
03:12:26,960 --> 03:12:28,720
I AM VERY SUPPORTIVE.

5199
03:12:28,720 --> 03:12:30,520
I HAVE A COUPLE OF QUESTIONS.

5200
03:12:30,520 --> 03:12:33,480
THE WORKSHOP AND THE FOCUS ON 

5201
03:12:33,480 --> 03:12:36,120
SORT OF THE OUTPUT OF THIS 

5202
03:12:36,120 --> 03:12:36,520
ACTIVITY.

5203
03:12:36,520 --> 03:12:38,600
THOUGHTS AROUND THE INPUT TO 

5204
03:12:38,600 --> 03:12:39,880
GET TO THAT OUTPUT, THE 

5205
03:12:39,880 --> 03:12:45,160
MATERIALS AND APPROACHES YOU 

5206
03:12:45,160 --> 03:12:46,320
ENVISION THE CAN BE A PART OF 

5207
03:12:46,320 --> 03:12:46,880
THIS.  THERE COULD BE A LOT 

5208
03:12:46,880 --> 03:12:47,520
OF VARIABILITY AND WE TALK 

5209
03:12:47,520 --> 03:12:51,360
ABOUT SINGLE CELL OMIC DO YOU 

5210
03:12:51,360 --> 03:12:51,920
ENVISION THIS MOVING ALSO 

5211
03:12:51,920 --> 03:12:55,760
INTO THE SPATIAL TRANSCRIPT 

5212
03:12:55,760 --> 03:12:56,400
BROADLY SPEAKING OR ARE YOU 

5213
03:12:56,400 --> 03:12:57,360
SPEAKING ORDINARILY WITHIN 

5214
03:12:57,360 --> 03:13:03,680
THE SPACE?

5215
03:13:03,680 --> 03:13:04,400
>> WE ARE THINKING
SOMEWHAT 

5216
03:13:04,400 --> 03:13:05,000
MORE LIMITED NOW IN TERMS OF 

5217
03:13:05,000 --> 03:13:06,520
OMICS. 

5218
03:13:06,520 --> 03:13:08,000
INTEGRATING DATA ACROSS 

5219
03:13:08,000 --> 03:13:11,080
ADDITIONAL MODALITIES HAS 

5220
03:13:11,080 --> 03:13:11,720
ADDITIONAL COMPLICATIONS OF 

5221
03:13:11,720 --> 03:13:12,760
COURSE. 

5222
03:13:12,760 --> 03:13:13,680
RIGHT NOW WE ARE REALLY 

5223
03:13:13,680 --> 03:13:17,840
FOCUSING ON THE OMICS DATA.

5224
03:13:17,840 --> 03:13:18,920
BUT WITH YOUR ADVICE WE CAN 

5225
03:13:18,920 --> 03:13:22,440
EXPAND THE PROJECT TO MORE 

5226
03:13:22,440 --> 03:13:22,960
THAN WHAT WE ARE THINKING 

5227
03:13:22,960 --> 03:13:24,120
RIGHT NOW. 

5228
03:13:24,120 --> 03:13:25,880
>> 

5229
03:13:25,880 --> 03:13:29,200
>> DR. FINKELSTEIN: TOM?

5230
03:13:29,200 --> 03:13:32,400
>> THIS IS GREAT.

5231
03:13:32,400 --> 03:13:33,480
AS SOMEBODY WHO IS IN THE 

5232
03:13:33,480 --> 03:13:35,400
FIELD IN CERTAIN AREAS IT HAS 

5233
03:13:35,400 --> 03:13:36,000
BEEN HARD TO UNDERSTAND HOW 

5234
03:13:36,000 --> 03:13:38,320
TO INTERFACE WITH OTHER 

5235
03:13:38,320 --> 03:13:38,880
INVESTIGATORS SO THIS IS A 

5236
03:13:38,880 --> 03:13:40,400
GREAT FIRST STEP.

5237
03:13:40,400 --> 03:13:41,040
I LIKE THE FACT THAT IT IS AN 

5238
03:13:41,040 --> 03:13:43,760
EASY TEAR (CORRECTION) TIER 

5239
03:13:43,760 --> 03:13:46,440
TO HIT. 

5240
03:13:46,440 --> 03:13:48,800
YOU NOT IMPOSING A LOT. THE 

5241
03:13:48,800 --> 03:13:50,640
HARMONIZATION ATTEMPTED TO 

5242
03:13:50,640 --> 03:13:57,440
ALIGN DATA SETS FOR 

5243
03:13:57,440 --> 03:13:57,920
INTERPRETABILITY ACROSS 

5244
03:13:57,920 --> 03:13:59,600
PLATFORMS BUT ONE POSSIBILITY 

5245
03:13:59,600 --> 03:14:00,160
GOING FORWARD IS LOOKING TO 

5246
03:14:00,160 --> 03:14:01,800
WORK SOMETHING THAT CAN BE 

5247
03:14:01,800 --> 03:14:02,360
SEARCHABLE SO YOU CAN PULL 

5248
03:14:02,360 --> 03:14:05,600
OUT A GENE OF INTEREST OR 

5249
03:14:05,600 --> 03:14:10,880
GENES WITH A PARTICULAR  

5250
03:14:10,880 --> 03:14:11,440
DIFFERENTIAL REGULATION OR 

5251
03:14:11,440 --> 03:14:12,800
SIGNIFICANCE ACROSS DATA 

5252
03:14:12,800 --> 03:14:13,400
SETS. THAT WOULD BE REALLY 

5253
03:14:13,400 --> 03:14:13,880
INTERESTING AND IT IS A 

5254
03:14:13,880 --> 03:14:15,760
PROBLEM IN SINGLE CELL, 

5255
03:14:15,760 --> 03:14:18,880
BECAUSE THE DEPTH OF 

5256
03:14:18,880 --> 03:14:20,360
SEQUENCING IS LOWER AND 

5257
03:14:20,360 --> 03:14:20,800
PEOPLE OFTEN REPORT 

5258
03:14:20,800 --> 03:14:23,360
LARGE-SCALE TRENDS AND 

5259
03:14:23,360 --> 03:14:24,480
ONTOLOGY'S AND NOT AS MUCH IN 

5260
03:14:24,480 --> 03:14:25,040
THE BULK REPORT THEIR TYPE 

5261
03:14:25,040 --> 03:14:27,520
GENES AND THE STATISTIC THAT 

5262
03:14:27,520 --> 03:14:28,840
DROVE THEM SO YOU COULD CULL 

5263
03:14:28,840 --> 03:14:32,160
THEM. 

5264
03:14:32,160 --> 03:14:32,720
IT MIGHT BE INTERESTING JUST 

5265
03:14:32,720 --> 03:14:33,720
TO VIEW A LITTLE BIT IN THE 

5266
03:14:33,720 --> 03:14:35,160
FUTURE, YOU WANT TO BE 

5267
03:14:35,160 --> 03:14:39,200
ONEROUS NOW BUT TO WHAT THE 

5268
03:14:39,200 --> 03:14:39,760
FUTURE TOWARDS SEARCHABLE 

5269
03:14:39,760 --> 03:14:40,600
DATA SETS AND THINGS THAT CAN 

5270
03:14:40,600 --> 03:14:41,320
BE INTERROGATED. 

5271
03:14:41,320 --> 03:14:47,680
>> DR. FINKELSTEIN: 

5272
03:14:47,680 --> 03:14:48,280
COMPLETELY AGREE. THANK YOU. 

5273
03:14:48,280 --> 03:14:51,400
SOUND LIKE A GREAT IDEA.

5274
03:14:51,400 --> 03:14:54,360
IF THERE ARE NO MORE 

5275
03:14:54,360 --> 03:14:54,920
COMMENTS, COULD SOMEONE PUT 

5276
03:14:54,920 --> 03:14:56,400
UP THE SLIDE OF THE ISSUES 

5277
03:14:56,400 --> 03:14:57,160
THAT WERE NOT GOING TO BE 

5278
03:14:57,160 --> 03:15:05,400
DISCUSSED?

5279
03:15:05,400 --> 03:15:05,960
I'M TRYING TO SAVE THE NUMBER 

5280
03:15:05,960 --> 03:15:08,280
OF MOTIONS.

5281
03:15:08,280 --> 03:15:09,360
>> I WANTED TO MAKE ONE
POINT 

5282
03:15:09,360 --> 03:15:11,240
THAT IS OKAY BOB. 

5283
03:15:11,240 --> 03:15:15,800
>> DR. FINKELSTEIN: SURE. 

5284
03:15:15,800 --> 03:15:16,360
>> I WANT TO THROW OUT THE

5285
03:15:16,360 --> 03:15:18,880
IDEA THAT YOUR POINT CAN BE 

5286
03:15:18,880 --> 03:15:21,640
APPLIED GENERICALLY NOW IN A 

5287
03:15:21,640 --> 03:15:23,360
SENSE THAT FROM WHAT WE HEARD 

5288
03:15:23,360 --> 03:15:24,240
EARLIER, ALL THE DATA IS 

5289
03:15:24,240 --> 03:15:31,440
GOING TO BE POSTED. SO THE 

5290
03:15:31,440 --> 03:15:34,200
CHALLENGE NOW IS NOT UP 

5291
03:15:34,200 --> 03:15:36,080
THERE, THE CHALLENGE IS HOW 

5292
03:15:36,080 --> 03:15:36,560
TO MAKE SENSE OF IT. NO 

5293
03:15:36,560 --> 03:15:38,520
MATTER WHAT FIELD YOU ARE IN, 

5294
03:15:38,520 --> 03:15:42,120
YOUR TALKING ABOUT SINGLE 

5295
03:15:42,120 --> 03:15:42,680
CELL. BUT ALL OF THE FIELDS 

5296
03:15:42,680 --> 03:15:44,280
PROBABLY CAN BENEFIT BY 

5297
03:15:44,280 --> 03:15:48,320
THINKING HARD ABOUT HOW TO DO 

5298
03:15:48,320 --> 03:15:50,600
KIND OF WHAT YOU SET FOR 

5299
03:15:50,600 --> 03:15:51,120
THEIR FIELD. YOU CANNOT 

5300
03:15:51,120 --> 03:15:53,240
REALLY DO THAT BEFORE. YOU 

5301
03:15:53,240 --> 03:15:54,840
HAD TO PAY FOR ALL THE 

5302
03:15:54,840 --> 03:15:55,360
POSTING. BUT NOW IT'S ALL 

5303
03:15:55,360 --> 03:16:00,880
GOING TO BE UP THERE. NOW, 

5304
03:16:00,880 --> 03:16:01,440
IT'S  MUCH MORE SIMPLER IN 

5305
03:16:01,440 --> 03:16:03,120
HIGHER HARMONIZE AND MAKE 

5306
03:16:03,120 --> 03:16:03,720
SENSE AND BE ABLE TO COMPARE 

5307
03:16:03,720 --> 03:16:06,040
AMONG DATABASES THAT 

5308
03:16:06,040 --> 03:16:07,600
EVERYBODY'S GOING TO BE 

5309
03:16:07,600 --> 03:16:08,200
THROWING UP SOMEWHERE.

5310
03:16:08,200 --> 03:16:10,880
--- THERE ARE GRANTS THAT NIH 

5311
03:16:10,880 --> 03:16:15,440
PUT OUT TO STIMULATE PEOPLE 

5312
03:16:15,440 --> 03:16:16,480
TO BUILD METADATA STANDARDS 

5313
03:16:16,480 --> 03:16:20,400
IN THEIR FIELD SO THAT THE 

5314
03:16:20,400 --> 03:16:21,600
DATA ONCE POSTED WOULD BE 

5315
03:16:21,600 --> 03:16:23,040
USEFUL. 

5316
03:16:23,040 --> 03:16:24,480
THERE ARE STILL A COUPLE MORE 

5317
03:16:24,480 --> 03:16:26,720
DEADLINES FOR THOSE GRANTS.

5318
03:16:26,720 --> 03:16:27,280
BUT IF THERE WAS SOMEBODY IN 

5319
03:16:27,280 --> 03:16:32,640
THE FIELD THAT WANTED TO DO 

5320
03:16:32,640 --> 03:16:33,640
THIS, THERE IS MONEY TO SET 

5321
03:16:33,640 --> 03:16:36,880
IT UP. 

5322
03:16:36,880 --> 03:16:38,360
YOU HAVE TO GET PEOPLE TO BUY 

5323
03:16:38,360 --> 03:16:39,000
IN, BUT THERE IS MONEY. 

5324
03:16:39,000 --> 03:16:40,640
>> DR. FINKELSTEIN: THANKS

5325
03:16:40,640 --> 03:16:44,560
WALTER. 

5326
03:16:44,560 --> 03:16:45,280
OKAY, IF I COULD HAVE A SLIDE 

5327
03:16:45,280 --> 03:16:48,280
OF THE ISSUES THAT WE WERE 

5328
03:16:48,280 --> 03:16:48,840
NOT GOING TO DISCUSS UNLESS 

5329
03:16:48,840 --> 03:16:51,120
THERE WERE QUESTIONS, SO YOU 

5330
03:16:51,120 --> 03:16:51,480
CAN SEE.

5331
03:16:51,480 --> 03:16:52,240
I WON'T READ WHAT IT SAYS 

5332
03:16:52,240 --> 03:16:58,200
HERE. 

5333
03:16:58,200 --> 03:16:58,720
THESE ARE JUST REISSUES OF 

5334
03:16:58,720 --> 03:17:00,600
THINGS WE HAVE DONE BEFORE, 

5335
03:17:00,600 --> 03:17:03,880
LIKE THE JOINTLY SPONSORED T 

5336
03:17:03,880 --> 03:17:08,400
32 MECHANISM. 

5337
03:17:08,400 --> 03:17:08,920
UNLESS THERE ARE QUESTIONS 

5338
03:17:08,920 --> 03:17:09,480
ABOUT THIS I'M NOT GOING TO 

5339
03:17:09,480 --> 03:17:10,080
DWELL ON ANY OF THEM. PAUSE 

5340
03:17:10,080 --> 03:17:11,280
THERE. 

5341
03:17:11,280 --> 03:17:14,840
OKAY, IN THAT CASE WHY DON'T 

5342
03:17:14,840 --> 03:17:16,640
YOU TAKE THE SLIDE DOWN. WE 

5343
03:17:16,640 --> 03:17:18,920
NEED A MOTION. SINCE I DID 

5344
03:17:18,920 --> 03:17:21,960
NOT HEAR ANY OBJECTIONS TO 

5345
03:17:21,960 --> 03:17:29,120
ANYTHING, WE NEED A MOTION TO 

5346
03:17:29,120 --> 03:17:32,200
APPROVE ALL THREE THAT WERE 

5347
03:17:32,200 --> 03:17:32,800
PRESENTED PLUS THE ONES WE 

5348
03:17:32,800 --> 03:17:36,800
HAVE ON THE SLIDE. I FEEL 

5349
03:17:36,800 --> 03:17:38,560
THIS IS AN AUCTION. 

5350
03:17:38,560 --> 03:17:44,280
VOTE IN THE CHAT. 

5351
03:17:44,280 --> 03:17:44,840
THAT BRINGS US TO THE END OF 

5352
03:17:44,840 --> 03:17:45,440
THE SESSION WHICH IS A LITTLE 

5353
03:17:45,440 --> 03:17:49,520
BIT EARLY, ALWAYS NICE.

5354
03:17:49,520 --> 03:17:50,080
TOMORROW THE CLOSED SESSION 

5355
03:17:50,080 --> 03:17:50,600
WILL START AT THE USUAL 1 

5356
03:17:50,600 --> 03:17:53,560
O'CLOCK. 

5357
03:17:53,560 --> 03:17:59,160
I ALSO THINK THAT IT'S 

5358
03:17:59,160 --> 03:17:59,760
POSSIBLE-- I THINK THAT MIGHT 

5359
03:17:59,760 --> 03:18:01,040
ACTUALLY END A LITTLE EARLY 

5360
03:18:01,040 --> 03:18:01,640
TOO, BECAUSE WE HAVE A LITTLE 

5361
03:18:01,640 --> 03:18:03,200
LESS ON THE AGENDA THAT YOU 

5362
03:18:03,200 --> 03:18:04,920
NEVER CAN TELL. 

5363
03:18:04,920 --> 03:18:05,440
GREAT TO SEE EVERYBODY AND 

5364
03:18:05,440 --> 03:18:07,200
SEE YOU IN LESS THAN 24 

5365
03:18:07,200 --> 03:18:09,440
HOURS. 

5366
03:18:09,440 --> 03:18:10,520
GREAT TO SEE EVERYBODY.

5367
03:18:10,520 --> 00:00:00,000
 BYE.