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>> GOOD AFTERNOON.

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WELCOME TO THE 188th MEETING

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OF THE NICHD ADVISORY COUNCIL.

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THANK YOU FOR YOUR PATIENCE AS

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WE HAD SOME TECHNICAL

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DIFFICULTIES BEFORE WE STARTED.

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TODAY'S MEETING IS OPEN TO THE

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PUBLIC, BROADCAST ON THE NIH

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VIDEOCAST NETWORK.

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THANK YOU FOR --

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SORRY.

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TOMORROW ON DAY 2 WE'LL HOLD OUR

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CLOSED SESSION.

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I APPRECIATE EVERYONE WHO HAS

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JOINED US TODAY BY TEAMS OR ON

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THE VIDEOCAST.

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WITH THE VIRTUAL MEETING FORMAT

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UNMUTE YOURSELF BEFORE SPEAKING

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INTO YOUR HOME MICROPHONE.

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STATE YOUR NAME SO THE

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TRANSCRIBER AND VIDEOCAST

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OBSERVERS WILL KNOW WHO IS

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SPEAKING.

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AFTER YOU SPEAK, PLEASE BE SURE

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TO MUTE YOUR MICROPHONE TO

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PREVENT ANY FEEDBACK LOOPS OR

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OTHER AUDITORY INTERFERENCES.

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NOW I WILL TURN THE MEETING OVER

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TO DR.  REBEKAH RASOOLY.

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>> I WANT TO SAY ONE WORD
OF

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THANKS TO ABOUT TEN TECHNICAL

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PEOPLE OFF TO MY RIGHT,

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INCLUDING THE STAFF FROM NIH

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VIDEOCAST AND OUR MEETING

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CONTRACTORS WHO REALLY RESCUED A

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DIFFICULT TECHNICAL SITUATION IN

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RECORD TIME.

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SO LET'S JUST OFFER THEM THANKS.

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WE CANNOT HOLD THESE MEETINGS,

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WHICH ARE PUBLIC AND OPEN,

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UNLESS WE IN FACT MAKE THEM OPEN

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TO THE PUBLIC SO THIS WAS A

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HEROIC ACT.

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ON THE COUNCIL MEMBER WEBSITE,

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YOU SHOULD HAVE READ AGREED, TO

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SIGNED THE RULES FOR SPECIAL

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GOVERNMENT EMPLOYEES BEFORE

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EVALUATING NIH -- ANY NIH GRANT

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APPLICATIONS.

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ALSO, REMEMBER THAT YOU CANNOT

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SERVE ON ANY NIH PEER REVIEW

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PANEL WHILE SERVING AS A COUNCIL

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MEMBER, AND YOU CANNOT PROVIDE

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SECOND LEVEL REVIEW AT COUNCIL

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FOR ANY APPLICATION IN WHICH YOU

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PARTICIPATED IN FIRST LEVEL PEER

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REVIEW.

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AN INDIVIDUAL CANNOT SERVE ON

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BOTH FIRST AND SECOND LEVELS OF

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PEER REVIEW.

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LET'S MOVE ON TO APPROVAL THE

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COUNCIL MINUTES FROM OUR JANUARY

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MEETING.

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THE MINUTES FOR THE JANUARY 2025

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MEETING WERE POSTED ON YOUR

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COUNCIL MEMBER WEBSITE FOR YOUR

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CONSIDERATION.

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I'M GOING TO ASK YOU TO VOTE TO

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APPROVE OR NOT APPROVE THESE

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MINUTES AND LET ME JUST EXPLAIN

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TO YOU HOW THE VOTING WORKS

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USING THIS TEAMS PLATFORM.

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WE'RE GOING TO ASK FIRST FOR

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PEOPLE WHO WANT TO VOTE IN FAVOR

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OF THE APPROVAL, AND WE'LL ASK

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YOU TO DO THAT BY RAISING YOUR

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TEAMS HAND, YOUR VIRTUAL HAND.

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AND THEN THE MEETING ORGANIZER

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WILL LOWER YOUR HAND.

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THEN I WILL CALL FOR PEOPLE WHO

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ARE OPPOSED TO APPROVING IT AND

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AGAIN PLEASE RAISE YOUR HAND AND

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JUST LEAVE IT UP.

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AND THEN FINALLY, WE'LL ASK FOR

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ANYPLACE WHO WANTS TO ABSTAIN.

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AGAIN RAISE YOUR HAND AND THEN

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WE'LL LOWER IT AS WE COUNT YOU.

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IF YOUR HAND IS NOT RAISED FOR

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YES, NO, OR ABSTAIN YOU WILL BE

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NOTED AS NOT PRESENT SEW FOR THE

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VOTE.

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SO NOW LET US MOVE TO CONSIDER

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THE JANUARY 2025 COUNCIL

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MINUTES.

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MAY I HAVE A MOTION TO APPROVE

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THE MINUTES?

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>>  SO MOVED.

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>> IS THAT DR. CEDARS?

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>> YES. 

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>> AND A SECOND? 

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>> SECOND.

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>> ALL RIGHT.

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AND SINCE THIS IS A VIRTUAL

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MEETING EVERYONE SHOULD PLEASE

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VOTE.

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ALL IN FAVOR RAISE YOUR HAND AND

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LEAVE IT UP. 

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DR. JABS CAN'T RAISE HER HAND IN

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TEAMS.

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WE'RE WORKING ON ALL THIS.

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ONLY MEMBERS SHOULD BE VOTING,

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NOT OUR AD HOC MEMBERS.

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JUST ONLY MEMBERS OF WHOM WE

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HAVE EIGHT I BELIEVE.

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OKAY.

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ANYONE OPPOSED PLEASE RAISE YOUR

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HAND. 

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FINALLY, IS ANYONE INDICATING

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THAT THEY WILL ABSTAIN, PLEASE

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RAISE YOUR HAND.

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OKAY.

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SO, THE MINUTES FROM JANUARY

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2025 HAVE BEEN APPROVED.

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LET ME JUST GO THROUGH THE

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FUTURE MEETING DATES AND THEN

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I'LL TURN THE MEETING BACK OVER

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TO DR. CERNICH.

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WE'RE MEETING NEXT, THIS WILL BE

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AN IN-PERSON MEETING IN

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SEPTEMBER, ON THE 9th AND

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10th.

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AND THAT WILL BE ON THE NIH

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CAMPUS.

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AND THEN IN JANUARY, END OF

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JANUARY, 26th AND 27th, FOR

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A VIRTUAL MEETING.

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THE REST OF THE DATES ARE ALSO

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ON YOUR AGENDA.

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DR. CERNICH?

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>>  THANK YOU, REBEKAH.

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I WANT TO THANK EVERYBODY FOR

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JOINING US TODAY AND THANK YOU

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AGAIN FOR BEARING WITH US WITH

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THE TECHNICAL DIFFICULTIES.

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SO, LET ME START BY INTRODUCING

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MYSELF.

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I THINK SOME OF YOU KNOW ME

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ALREADY.

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BUT FOR THOSE WHO DO NOT, I'M

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ALISON CERNICH, I HAVE BEEN

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DEPUTY DIRECTOR OF NICHD SINCE

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2019.

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AND I WAS ASKED TO STEP IN AS

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ACTING DIRECTOR OF NICHD IN

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APRIL AND HAVE BEEN DOING SO

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SINCE THEN.

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PRIOR TO MY SERVICE AS THE

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DEPUTY DIRECTOR OF NICHD, I WAS

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DIRECTOR FOR NATIONAL CENTER FOR

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MEDICAL REHABILITATION RESEARCH

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HERE AT NICHD.

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PRIOR TO THAT I WAS AT THE

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DEPARTMENT OF VETERANS AFFAIRS

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WHERE I HELD MULTIPLE ROLES

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INCLUDING LIAISON FOR

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PSYCHOLOGICAL HEALTH AND

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TRAUMATIC BRAIN INJURY PROGRAM

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DEPARTMENT OF DEFENSE.

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I HAVE AN INTRAMURAL SCIENCE

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PROGRAM, WORKING WITH THE NIH

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REHABILITATION MEDICINE

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DEPARTMENT AT THE CLINICAL

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CENTER, WORKING ON INTEGRATING

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DISABILITY FUNCTIONING DATA INTO

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THE "ALL OF US" PLATFORM AND

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ALSO DEVELOPING ASSISTIVE

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TECHNOLOGY MEASURE FOR THAT

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PLATFORM WITH THE TEAM THERE.

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SO JUST WANT TO LET YOU KNOW A

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LITTLE BIT OF BACKGROUND ABOUT

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ME.

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ALSO I WANT TO SAY THANK YOU TO

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DR. BIANCHI FOR HER EXCELLENT AS

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MUCH AS AS DIRECTOR UNTIL THIS

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YEAR.

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I WANT TO TALK ABOUT SOME

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PROGRAM UPDATES WE HAVE AT

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NICHD.

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A NUMBER OF UPDATES RELATED TO

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HHS AND NIH LEADERSHIP.

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SOME UPDATES RELATED TO THE

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BUDGET.

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AND THEN PROGRAM AND POLICY

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UPDATES.

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YOU WILL NOTICE WE'RE LIGHT ON

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SCIENCE THIS TIME.

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WE'VE HAD A NUMBER OF THINGS

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HAPPEN, WE WANT TO MAKE SURE YOU

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HAVE THE INFORMATION YOU NEED TO

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TRACK WHAT'S HAPPENING HERE.

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SO WITH RESPECT TO OUR PROGRAM,

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I DO WANT TO HIGHLIGHT AND THANK

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COUNCIL FOR THEIR FANTASTIC

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INPUT AS WE MOVE THROUGH OUR

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STRATEGIC PLAN REFRESH,

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PUBLISHED IN JANUARY OF 2025.

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AS WE NOTED IN PREVIOUS COUNCILS

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THE STRATEGIC PLAN HAS NOT

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CHANGED SUBSTANTIVELY IN TERMS

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OF OUR OVERARCHING RESEARCH

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THEME.

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AND RESEARCH GOALS.

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WE DID HAVE SOME UPDATES TO THE

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ASPIRATIONAL GOALS AND THOSE ARE

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NOTED IN THE PLAN.

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THIS IS STILL AVAILABLE ON OUR

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WEBSITE.

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AND I JUST WANT TO NOTE AS WELL

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THAT ONE OF THE REASONS THAT WE

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REFRESHED INSTEAD OF FULLY

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OVERHAULING WAS THAT WE WERE

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TRACKING THROUGH IMPLEMENTATION

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PLAN A NUMBER OF THE SCIENTIFIC

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ADVANCES AND PROGRESS RELATED TO

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OUR GOALS AND FELT THAT WE HAD

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ANOTHER FIVE YEARS OF WORK TO DO

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BUT WE DID ADJUST SOME

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OBJECTIVES TO MAKE SURE WE

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ACCOUNTED FOR EITHER PROGRESS IN

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THE FIELD OR PROGRESS THAT WE

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WERE TRACKING WITH RESPECT TO

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PROGRAMMATIC UPDATES AND

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CHANGES.

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SO, THIS IS AVAILABLE ON THE

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WEBSITE NOW.

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I ALSO JUST WANT TO THANK THE

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STAFF WHO DID AN INCREDIBLE JOB.

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WE WERE WELL AHEAD OF SCHEDULE

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AND GRATEFUL TO GET THIS OUT IN

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JANUARY.

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AND THANKS SO MUCH TO ALL OF

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YOU.

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IT WAS A HUGE EFFORT, WHEN I

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COUNTED 75 TO 100 STAFF THAT

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MADE THIS HAPPEN.

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SO, THE OTHER THING I JUST WANT

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TO CALL EVERYONE'S ATTENTION TO,

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THIS IS, AGAIN, ALSO ON OUR

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WEBSITE, WE USUALLY GO THROUGH A

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NUMBER OF SCIENTIFIC UPDATES,

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BUT GIVEN PROGRAMMATIC AND NIH

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AND HHS-WIDE UPDATES WE WANTED

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TO GIVE YOU, WE WANTED TO CALL

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YOUR ATTENTION TO OUR 2024

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00:09:14,386 --> 00:09:15,354
RESEARCH HIGHLIGHTS RECAP.

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THERE'S SO MANY PLACES WHERE THE

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SCIENCE ADVANCED BASED ON

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EFFORTS OF THE EXTRAMURAL

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COMMUNITY AND INTRAMURAL

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COMMUNITY AND REALLY HAS

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ADVANCED OUR STRATEGIC PLAN BUT

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ALSO SCIENCE IN THESE MAJOR

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AREAS.

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AND I JUST WANT TO MAKE SURE

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FOLKS HAVE THAT AS A PUBLIC

266
00:09:30,269 --> 00:09:32,871
RESOURCE IF THEY WANT TO TALK

267
00:09:32,871 --> 00:09:37,376
ABOUT WHAT NICHD ACCOMPLISHED IN

268
00:09:37,376 --> 00:09:38,243
2024.

269
00:09:38,243 --> 00:09:39,912
ANOTHER UPDATE RELATED TO NICHD

270
00:09:39,912 --> 00:09:41,680
IS THAT MANY OF YOU ARE FAMILIAR

271
00:09:41,680 --> 00:09:44,383
WITH THE DATA AND SPECIMEN HUB,

272
00:09:44,383 --> 00:09:44,950
DASH.

273
00:09:44,950 --> 00:09:46,818
THIS IS A CENTRALIZED RESOURCE

274
00:09:46,818 --> 00:09:49,087
FOR RESEARCHERS TO SHARE

275
00:09:49,087 --> 00:09:50,556
DE-IDENTIFIED DATA FROM STUDIES

276
00:09:50,556 --> 00:09:52,157
FUNDED BY NICHD.

277
00:09:52,157 --> 00:09:55,460
IT SEARCHES AS A PORTAL FOR

278
00:09:55,460 --> 00:09:56,228
REQUESTING BIOSPECIMENS FOR

279
00:09:56,228 --> 00:10:01,133
SELECTED STUDIES IN THERE. 

280
00:10:01,133 --> 00:10:03,569
WE HAVE 230 STUDIES ON 60

281
00:10:03,569 --> 00:10:05,637
TOPICS, AND THERE ARE MANY

282
00:10:05,637 --> 00:10:07,172
SPECIMENS AVAILABLE INCLUDING

283
00:10:07,172 --> 00:10:09,141
BLOOD AND BREAST MILK.

284
00:10:09,141 --> 00:10:10,676
WE ARE NOW UNDERGOING A

285
00:10:10,676 --> 00:10:13,512
MIGRATION TO A NEW PLATFORM, AND

286
00:10:13,512 --> 00:10:15,581
DASH IS CURRENTLY UNAVAILABLE.

287
00:10:15,581 --> 00:10:17,683
IT WAS UNAVAILABLE BEGINNING

288
00:10:17,683 --> 00:10:18,617
ABOUT MAY 5.

289
00:10:18,617 --> 00:10:21,520
WE'RE MOVING OVER TO THE

290
00:10:21,520 --> 00:10:24,790
BIOMEDICAL RESEARCH INFORMATICS

291
00:10:24,790 --> 00:10:26,024
COMPUTING SYSTEM, BRICS, HOSTED

292
00:10:26,024 --> 00:10:26,458
BY NIH.

293
00:10:26,458 --> 00:10:30,629
AND THIS IS A PLATFORM THAT WILL

294
00:10:30,629 --> 00:10:31,830
PROVIDE ADDED FUNCTIONALITY, AND

295
00:10:31,830 --> 00:10:32,564
INCREASED SECURITY.

296
00:10:32,564 --> 00:10:34,533
THIS IS A MODULAR WEB-BASED

297
00:10:34,533 --> 00:10:39,504
SYSTEM SO WE WILL ESSENTIALLY BE

298
00:10:39,504 --> 00:10:42,874
AN AN STANCE TO THAT PLATFORM.

299
00:10:42,874 --> 00:10:44,643
ALL THE DATASETS PREVIOUSLY WILL

300
00:10:44,643 --> 00:10:45,510
STILL BE AVAILABLE.

301
00:10:45,510 --> 00:10:47,913
THEY ARE JUST GOING TO BE

302
00:10:47,913 --> 00:10:49,548
MIGRATING, DATA WILL BE

303
00:10:49,548 --> 00:10:50,649
MIGRATING OVER TO THAT PLATFORM.

304
00:10:50,649 --> 00:10:54,720
WE HOPE IT WILL BE BACK

305
00:10:54,720 --> 00:10:55,787
AVAILABLE IN FALL OF 2025.

306
00:10:55,787 --> 00:10:57,990
THE OTHER THING I JUST WANT TO

307
00:10:57,990 --> 00:11:00,058
NOTE THAT WE HAVE BEEN WORKING

308
00:11:00,058 --> 00:11:08,967
ON WITH NIH IS THE AUTISM DATA

309
00:11:08,967 --> 00:11:10,168
SCIENCE INITIATIVE, RELEASED

310
00:11:10,168 --> 00:11:11,269
RECENTLY, BEING LED BY THE

311
00:11:11,269 --> 00:11:13,005
DIVISION OF PROGRAM COORDINATION

312
00:11:13,005 --> 00:11:13,672
PLANNING AND STRATEGIC

313
00:11:13,672 --> 00:11:15,073
INITIATIVES, WHICH I WILL

314
00:11:15,073 --> 00:11:15,974
CONTINUE TO CALL DPCPSI FROM

315
00:11:15,974 --> 00:11:18,710
HERE ON IN BECAUSE IT'S A

316
00:11:18,710 --> 00:11:18,977
MOUTHFUL.

317
00:11:18,977 --> 00:11:20,679
BUT THEY ARE GOING TO BE LOOKING

318
00:11:20,679 --> 00:11:22,314
AT CAUSATION OF AUTISM SPECTRUM

319
00:11:22,314 --> 00:11:24,683
DISORDER AS WELL AS SOME OF THE

320
00:11:24,683 --> 00:11:26,385
DATA RELATED TO THE

321
00:11:26,385 --> 00:11:28,120
EFFECTIVENESS OF INTERVENTIONS

322
00:11:28,120 --> 00:11:31,390
TO ULTIMATELY IMPROVE OUTCOMES.

323
00:11:31,390 --> 00:11:33,892
AND SO THIS IS UTILIZING

324
00:11:33,892 --> 00:11:34,493
INTEGRATED DATA RESOURCES

325
00:11:34,493 --> 00:11:37,295
ALREADY AVAILABLE WITH THE

326
00:11:37,295 --> 00:11:37,963
APPROPRIATE PRIVACY AND

327
00:11:37,963 --> 00:11:38,830
CONFIDENTIALITY PROTECTION.

328
00:11:38,830 --> 00:11:40,465
WE'RE GOING TO BE TRYING TO

329
00:11:40,465 --> 00:11:42,234
IDENTIFY AND ADDRESS GAPS VIA

330
00:11:42,234 --> 00:11:43,535
TARGETED DATA GENERATION SO THIS

331
00:11:43,535 --> 00:11:46,505
IS NOT A LARGE DATA COLLECTION

332
00:11:46,505 --> 00:11:47,606
INITIATIVE BUT REALLY TARGETED

333
00:11:47,606 --> 00:11:49,474
WITHIN THE SCOPE OF WHAT'S

334
00:11:49,474 --> 00:11:51,376
DETAILED IN THE RESEARCH

335
00:11:51,376 --> 00:11:52,144
OPPORTUNITY ANNOUNCEMENTS.

336
00:11:52,144 --> 00:11:54,379
IT WILL SUPPORT ANALYSIS OF

337
00:11:54,379 --> 00:11:56,548
INTEGRATED DATA RESOURCE WITH

338
00:11:56,548 --> 00:11:57,649
LINKAGES THAT THOSE LINKAGES ARE

339
00:11:57,649 --> 00:11:59,317
GOING TO HAVE TO MEET SPECIFIC

340
00:11:59,317 --> 00:12:02,254
REQUIREMENTS THAT WILL BE

341
00:12:02,254 --> 00:12:02,788
REVIEWED.

342
00:12:02,788 --> 00:12:04,656
ALSO, WE'RE GOING TO HAVE A

343
00:12:04,656 --> 00:12:06,358
VENUE TO REPLICATE ANY ANALYSES

344
00:12:06,358 --> 00:12:08,060
THAT ARE CONDUCTED AS A FOCUS OF

345
00:12:08,060 --> 00:12:12,531
THIS INITIATIVE WHICH YOU'LL SEE

346
00:12:12,531 --> 00:12:13,765
IS IN CONCERT WITH THE

347
00:12:13,765 --> 00:12:16,601
PRIORITIES OF THE NEW NIH

348
00:12:16,601 --> 00:12:16,868
DIRECTOR.

349
00:12:16,868 --> 00:12:19,805
AND THERE IS ALSO NOTED IN HERE

350
00:12:19,805 --> 00:12:21,239
COMPLEMENTARY EFFORT TO DEVELOP

351
00:12:21,239 --> 00:12:22,641
A REAL WORLD DATA PLATFORM BUT

352
00:12:22,641 --> 00:12:23,875
THIS IS NOT THAT SPECIFIC

353
00:12:23,875 --> 00:12:24,176
INITIATIVE.

354
00:12:24,176 --> 00:12:28,914
THIS IS A VERY FAST-MOVING

355
00:12:28,914 --> 00:12:31,116
INITIATIVE, DUE DATE JUNE 27.

356
00:12:31,116 --> 00:12:33,351
WE'RE LOOKING TO PROBABLY DO

357
00:12:33,351 --> 00:12:38,890
AWARDS UP TO $5 MILLION, A

358
00:12:38,890 --> 00:12:39,991
24-MONTH TO 36-MONTH PROJECT

359
00:12:39,991 --> 00:12:40,392
PERIOD.

360
00:12:40,392 --> 00:12:42,594
THE OTHER THING I WANT TO MAKE

361
00:12:42,594 --> 00:12:44,796
SURE YOU ALL ARE AWARE OF

362
00:12:44,796 --> 00:12:46,198
RELATED TO PEDIATRIC HEALTH

363
00:12:46,198 --> 00:12:48,834
RESEARCH FUNDED BY NIH, MANY MAY

364
00:12:48,834 --> 00:12:50,235
KNOW THAT NICHD WAS ASKED TO

365
00:12:50,235 --> 00:12:52,938
FUND A NATIONAL ACADEMY OF

366
00:12:52,938 --> 00:12:53,672
SCIENCE, ENGINEERING, AND

367
00:12:53,672 --> 00:12:54,773
MEDICINE STUDY ON THIS.

368
00:12:54,773 --> 00:12:57,976
AND THIS IS A COMMITTEE THAT IS

369
00:12:57,976 --> 00:12:59,845
EXAMINING CURRENT NIH PEDIATRIC

370
00:12:59,845 --> 00:13:00,946
RESEARCH PORTFOLIO AND

371
00:13:00,946 --> 00:13:01,480
STRUCTURE.

372
00:13:01,480 --> 00:13:03,415
WE HAD A NUMBER OF NIH

373
00:13:03,415 --> 00:13:04,983
INSTITUTES AND CENTERS WHO

374
00:13:04,983 --> 00:13:06,051
PARTICIPATED IN WEBINARS

375
00:13:06,051 --> 00:13:06,952
PROVIDING THIS COMMITTEE MORE

376
00:13:06,952 --> 00:13:09,821
INFORMATION ABOUT WHAT WE DO IN

377
00:13:09,821 --> 00:13:11,490
PEDIATRICS ACROSS THE NIH.

378
00:13:11,490 --> 00:13:13,125
NICHD IS A LOCUS FOR MANAGEMENT

379
00:13:13,125 --> 00:13:14,192
OF THIS STUDY.

380
00:13:14,192 --> 00:13:16,962
THERE'S AN OPEN CALL FOR

381
00:13:16,962 --> 00:13:17,295
PERSPECTIVES.

382
00:13:17,295 --> 00:13:20,332
ONE THAT CLOSES ON JUNE 30 FOR

383
00:13:20,332 --> 00:13:20,999
PEDIATRIC PATIENTS AND THEIR

384
00:13:20,999 --> 00:13:23,301
FAMILIES, THE LINK IS THERE FOR

385
00:13:23,301 --> 00:13:25,804
THAT PARTICULAR CALL FOR

386
00:13:25,804 --> 00:13:26,138
PERSPECTIVES.

387
00:13:26,138 --> 00:13:28,006
AND THEN JULY 1 THERE WILL BE

388
00:13:28,006 --> 00:13:29,307
ONE THAT CLOSES FOR PEDIATRIC

389
00:13:29,307 --> 00:13:30,408
HEALTH RESEARCHERS AND THE LINK

390
00:13:30,408 --> 00:13:31,376
IS THERE FOR THAT.

391
00:13:31,376 --> 00:13:33,678
SO WE DO WANT TO ENCOURAGE

392
00:13:33,678 --> 00:13:34,780
COUNCIL AND THOSE WATCHING TO

393
00:13:34,780 --> 00:13:37,415
SPREAD THIS OUT TO YOUR

394
00:13:37,415 --> 00:13:38,717
COMMUNITIES SO THAT NASEM CAN

395
00:13:38,717 --> 00:13:40,152
TAKE IN THAT INPUT AND

396
00:13:40,152 --> 00:13:41,686
INCORPORATE IN THEIR REPORT.

397
00:13:41,686 --> 00:13:46,925
WE ANTICIPATE THE REPORT WILL BE

398
00:13:46,925 --> 00:13:50,328
RELEASED IN JANUARY OF 2026.

399
00:13:50,328 --> 00:13:52,631
SO, LET ME GIVE A COUPLE UPDATES

400
00:13:52,631 --> 00:13:56,134
RELATED TO HHS AND NIH

401
00:13:56,134 --> 00:13:56,434
LEADERSHIP.

402
00:13:56,434 --> 00:13:57,769
SO, FOR HHS, I THINK MANY OF YOU

403
00:13:57,769 --> 00:14:01,039
ARE AWARE WE HAVE A NEW

404
00:14:01,039 --> 00:14:01,306
SECRETARY.

405
00:14:01,306 --> 00:14:04,442
ROBERT F. KENNEDY JR. WAS SWORN

406
00:14:04,442 --> 00:14:05,644
IN FEBRUARY 13, 2025.

407
00:14:05,644 --> 00:14:09,181
AND ON THE SAME DAY THERE WAS

408
00:14:09,181 --> 00:14:12,117
THE ISSUANCE OF EXECUTIVE ORDER

409
00:14:12,117 --> 00:14:14,119
TO ESTABLISH THE PRESIDENT'S

410
00:14:14,119 --> 00:14:15,187
MAKE AMERICA HEALTHY AGAIN

411
00:14:15,187 --> 00:14:16,188
COMMISSION TO INVESTIGATE AND

412
00:14:16,188 --> 00:14:18,256
ADDRESS ROOT CAUSES OF AMERICA'S

413
00:14:18,256 --> 00:14:20,125
ESCALATING HEALTH CRISIS WITH A

414
00:14:20,125 --> 00:14:24,329
FOCUS ON CHILDHOOD CHRONIC

415
00:14:24,329 --> 00:14:24,663
DISEASE.

416
00:14:24,663 --> 00:14:25,730
SO, THIS WAS WITHIN THIS

417
00:14:25,730 --> 00:14:27,933
EXECUTIVE ORDER ALSO THERE WAS A

418
00:14:27,933 --> 00:14:31,303
CALL FOR ASSESSMENT FROM THE

419
00:14:31,303 --> 00:14:33,505
MAHA COMMISSION TO IDENTIFY KEY

420
00:14:33,505 --> 00:14:35,807
DRIVERS BEHIND CHILDHOOD DISEASE

421
00:14:35,807 --> 00:14:37,242
CRISIS WITH FOUR KEY FOCUS AREAS

422
00:14:37,242 --> 00:14:39,611
RECOMMENDED IN THE REPORT THAT

423
00:14:39,611 --> 00:14:47,752
WAS ISSUED ON MAY 22, INCLUDING

424
00:14:47,752 --> 00:14:48,854
POOR DIET, EXPOSURE TO

425
00:14:48,854 --> 00:14:52,057
CHEMICALS, LACK OF PHYSICAL

426
00:14:52,057 --> 00:14:58,396
ACTIVITY AND OVERMEDICALIZATION.

427
00:14:58,396 --> 00:15:02,100
ALSO NUTRITION TRIALS AND

428
00:15:02,100 --> 00:15:02,567
PRECISION TOXICOLOGY.

429
00:15:02,567 --> 00:15:03,668
A PLAN WILL BE DEVELOPED AND

430
00:15:03,668 --> 00:15:06,504
WORKING WITH NIH TO MAKE THAT

431
00:15:06,504 --> 00:15:06,738
HAPPEN.

432
00:15:06,738 --> 00:15:07,806
THE OTHER THING THE COMMUNITY

433
00:15:07,806 --> 00:15:09,574
MAY WANT TO BE AWARE OF

434
00:15:09,574 --> 00:15:10,575
ESPECIALLY RELATED TO SOME OF

435
00:15:10,575 --> 00:15:12,410
THE ISSUES WE'VE DISCUSSED AT

436
00:15:12,410 --> 00:15:13,511
PREVIOUS COUNCILS RELATED TO

437
00:15:13,511 --> 00:15:16,681
INFANT FORMULA THERE IS A NEW

438
00:15:16,681 --> 00:15:18,550
OPERATION STORK SPEED PRIMARILY

439
00:15:18,550 --> 00:15:21,820
LED BY THE FDA, TO ENSURE

440
00:15:21,820 --> 00:15:22,921
SAFETY, RELIABILITY, NUTRITIONAL

441
00:15:22,921 --> 00:15:26,324
ADEQUACY OF THE INFANT FORMULA.

442
00:15:26,324 --> 00:15:30,161
THERE IS ALSO A REQUEST FOR

443
00:15:30,161 --> 00:15:31,796
INFORMATION ON INFANT FORMULA

444
00:15:31,796 --> 00:15:33,331
NUTRIENT REQUIREMENTS, THE LINK

445
00:15:33,331 --> 00:15:34,099
IS THERE.

446
00:15:34,099 --> 00:15:41,306
THE COMMENTS ARE DUE ON THAT BY

447
00:15:41,306 --> 00:15:41,740
SEPTEMBER 11, 2025.

448
00:15:41,740 --> 00:15:43,508
SO THERE HAVE BEEN CHANGES IN

449
00:15:43,508 --> 00:15:49,080
NIH LEADERSHIP SINCE THE LAST

450
00:15:49,080 --> 00:15:50,649
TIME WE'VE MET.

451
00:15:50,649 --> 00:15:51,516
APRIL 21, 2025, DR. JAY

452
00:15:51,516 --> 00:15:53,618
BHATTACHARYA JOINED US AS NEW

453
00:15:53,618 --> 00:15:54,486
NIH DIRECTOR.

454
00:15:54,486 --> 00:15:57,122
HE TOOK OVER THE POSITION FROM

455
00:15:57,122 --> 00:15:59,291
THE ACTING DIRECTOR, DR. MATT

456
00:15:59,291 --> 00:16:01,393
MEMOLI, ALSO PICTURED HERE, WHO

457
00:16:01,393 --> 00:16:05,330
IS NOW THE NIH PRINCIPAL DEPUTY

458
00:16:05,330 --> 00:16:05,597
DIRECTOR.

459
00:16:05,597 --> 00:16:08,733
A NUMBER OF NEW ACTING

460
00:16:08,733 --> 00:16:09,701
DIRECTORS, I'M ONE.

461
00:16:09,701 --> 00:16:11,803
SO ALL THE NAMES ARE LISTED

462
00:16:11,803 --> 00:16:12,304
THERE.

463
00:16:12,304 --> 00:16:15,507
MANY OF THESE FOLKS WERE EITHER

464
00:16:15,507 --> 00:16:17,375
DEPUTY DIRECTORS OR WERE

465
00:16:17,375 --> 00:16:20,445
DIRECTORS IN OTHER PARTS OF THE

466
00:16:20,445 --> 00:16:22,213
NIH, AND SO JUST WANT TO

467
00:16:22,213 --> 00:16:24,816
ACKNOWLEDGE ALL OF THE NEW

468
00:16:24,816 --> 00:16:27,552
LEADERSHIP ACROSS BUT WON'T GO

469
00:16:27,552 --> 00:16:34,359
INTO THEM FOR THE PURPOSE OF

470
00:16:34,359 --> 00:16:34,559
TIME.

471
00:16:34,559 --> 00:16:35,327
SO DR. BHATTACHARYA HAS BEEN

472
00:16:35,327 --> 00:16:37,429
VERY MUCH ON POINT WITH HIS

473
00:16:37,429 --> 00:16:38,296
LEADERSHIP PRIORITIES.

474
00:16:38,296 --> 00:16:40,598
AND THEY ARE LISTED HERE.

475
00:16:40,598 --> 00:16:43,234
HE HAS FIVE MAIN PRIORITIES THAT

476
00:16:43,234 --> 00:16:45,537
INCLUDE FOCUS ON IMPROVING

477
00:16:45,537 --> 00:16:50,342
POPULATION HEALTH, WHICH REALLY

478
00:16:50,342 --> 00:16:59,351
DOES MESH WITH HIS BACKGROUND AS

479
00:16:59,351 --> 00:17:00,618
A POPULATION RESEARCHER.

480
00:17:00,618 --> 00:17:01,853
REPRODUCIBILITY AND RIGOR WHICH

481
00:17:01,853 --> 00:17:05,056
I MENTIONED RELATED TO AUTISM

482
00:17:05,056 --> 00:17:05,890
INITIATIVE, ABOUT

483
00:17:05,890 --> 00:17:07,759
REPRODUCIBILITY OF THE RESEARCH

484
00:17:07,759 --> 00:17:11,396
WE CONDUCT AND SHARING NEGATIVE

485
00:17:11,396 --> 00:17:11,830
FINDINGS.

486
00:17:11,830 --> 00:17:12,597
INNOVATION AND COLLABORATION AND

487
00:17:12,597 --> 00:17:15,433
REALLY TRYING TO PUSH THE

488
00:17:15,433 --> 00:17:17,836
ENVELOPE ON NEW FINDINGS, NOVEL

489
00:17:17,836 --> 00:17:20,905
FINDINGS, IN RESEARCH PORTFOLIO.

490
00:17:20,905 --> 00:17:21,773
RESEARCH SAFETY AND

491
00:17:21,773 --> 00:17:23,608
TRANSPARENCY, MAKING SURE WE

492
00:17:23,608 --> 00:17:28,680
MAINTAIN HIGHEST STANDARDS AND

493
00:17:28,680 --> 00:17:29,981
ADHERE TO STANDARDS.

494
00:17:29,981 --> 00:17:31,182
AND ACADEMIC FREEDOM.

495
00:17:31,182 --> 00:17:36,788
THIS IS REALLY TO SHARE ACADEMIC

496
00:17:36,788 --> 00:17:38,089
DISAGREEMENTS AND MAKE SURE

497
00:17:38,089 --> 00:17:39,424
SCIENTISTS AT NIH HAVE THE

498
00:17:39,424 --> 00:17:40,859
ACADEMIC FREEDOM TO PUBLISH

499
00:17:40,859 --> 00:17:47,165
THEIR SCIENCE IN THE MOST

500
00:17:47,165 --> 00:17:48,833
UNRESTRAINED WAY POSSIBLE.

501
00:17:48,833 --> 00:17:52,103
NOW I'LL GO INTO THE NICHD

502
00:17:52,103 --> 00:17:54,205
BUDGET WHICH I KNOW HAS BEEN

503
00:17:54,205 --> 00:17:55,974
FRONT OF MIND SINCE THE BUDGET

504
00:17:55,974 --> 00:17:56,808
DOCUMENTS ARE BEING RELEASED.

505
00:17:56,808 --> 00:17:59,244
I'LL SAY WITH RESPECT TO OUR FY

506
00:17:59,244 --> 00:18:02,514
25 BUDGET WE DO HAVE OUR FULL FY

507
00:18:02,514 --> 00:18:05,150
25 BUDGET AS OF NOW.

508
00:18:05,150 --> 00:18:09,421
AND OUR PLAN AT THIS MOMENT, AND

509
00:18:09,421 --> 00:18:13,124
I HAVE REASSURED OUR STAFF AND

510
00:18:13,124 --> 00:18:14,893
OTHERS THAT WE REALLY DO INTEND

511
00:18:14,893 --> 00:18:17,395
TO OBLIGATE ALL OF OUR

512
00:18:17,395 --> 00:18:18,596
APPROPRIATED FUNDS IN FY 25.

513
00:18:18,596 --> 00:18:20,098
SO WE DO HAVE SOME CHALLENGES.

514
00:18:20,098 --> 00:18:22,233
I WILL TALK A LITTLE BIT ABOUT

515
00:18:22,233 --> 00:18:23,401
THOSE IN A MOMENT.

516
00:18:23,401 --> 00:18:27,272
THAT'S OUR CURRENT COMMITMENT TO

517
00:18:27,272 --> 00:18:27,705
YOU.

518
00:18:27,705 --> 00:18:29,574
MAY 2, THE PRESIDENT'S SKINNY

519
00:18:29,574 --> 00:18:31,776
BUDGET WAS RELEASED.

520
00:18:31,776 --> 00:18:33,711
THIS INCLUDED FOR THOSE WHO WERE

521
00:18:33,711 --> 00:18:34,579
ABLE TO REVIEW IT, IT IS

522
00:18:34,579 --> 00:18:40,985
AVAILABLE ON THE WHITE HOUSE

523
00:18:40,985 --> 00:18:43,688
WEBSITE, $18 BILLION CUT TO NIH,

524
00:18:43,688 --> 00:18:47,625
CONSOLIDATION OF 27 INSTITUTES

525
00:18:47,625 --> 00:18:49,127
TO 8, A PROPOSAL TO MERGE WITH

526
00:18:49,127 --> 00:18:53,631
THE NATIONAL  NATIONAL INSTITUTN

527
00:18:53,631 --> 00:18:55,500
DEAFNESS, AND FOUR INSTITUTES

528
00:18:55,500 --> 00:18:58,069
AND CENTERS PROPOSED FOR

529
00:18:58,069 --> 00:18:59,771
ELIMINATION INCLUDING FOGARTY,

530
00:18:59,771 --> 00:19:01,072
NATIONAL INSTITUTE ON MINORITY

531
00:19:01,072 --> 00:19:07,512
HEALTH, NATIONAL  NATIONAL INSTD

532
00:19:07,512 --> 00:19:09,180
COMPLEMENTARY AND INTEGRATIVE

533
00:19:09,180 --> 00:19:09,414
HEALTH.

534
00:19:09,414 --> 00:19:12,784
THE HHS BUDGET BRIEF WAS

535
00:19:12,784 --> 00:19:17,689
RELEASED ON MAY 30, A 40% CUT

536
00:19:17,689 --> 00:19:18,556
FOR COMBINED NICHD-NIDCD

537
00:19:18,556 --> 00:19:20,859
INSTITUTE, AND NEW NAME FOR THAT

538
00:19:20,859 --> 00:19:21,860
INSTITUTE WHICH WAS NATIONAL

539
00:19:21,860 --> 00:19:24,262
INSTITUTE FOR CHILD AND WOMEN'S

540
00:19:24,262 --> 00:19:27,332
HEALTH, SENSORY DISORDERS, AND

541
00:19:27,332 --> 00:19:28,099
COMMUNICATION.

542
00:19:28,099 --> 00:19:29,834
AND THEN FINALLY ON JUNE 5,

543
00:19:29,834 --> 00:19:32,804
THERE WAS RELEASE OF THE NIH

544
00:19:32,804 --> 00:19:33,404
CONGRESSIONAL JUSTIFICATION,

545
00:19:33,404 --> 00:19:34,973
WHICH ADDED ONE MORE PIECE OF

546
00:19:34,973 --> 00:19:36,841
INFORMATION THAT WE HAVE

547
00:19:36,841 --> 00:19:37,842
ADDITIONAL GUIDANCE TO UTILIZE

548
00:19:37,842 --> 00:19:41,346
TO THE GREATEST EXTENT POSSIBLE,

549
00:19:41,346 --> 00:19:45,083
MULTI-YEAR FUNDING FOR FY 25 AND

550
00:19:45,083 --> 00:19:49,220
FY 26, AND SOME SPECIFIC

551
00:19:49,220 --> 00:19:49,721
DIRECTION ON PERSONNEL,

552
00:19:49,721 --> 00:19:50,889
REDUCTION OR SHIFT.

553
00:19:50,889 --> 00:19:52,423
SO LET ME WALK YOU THROUGH A

554
00:19:52,423 --> 00:19:58,463
LITTLE BIT OF WHAT THIS MEANS.

555
00:19:58,463 --> 00:20:00,532
I'LL TALK ABOUT THE MULTI-YEAR

556
00:20:00,532 --> 00:20:02,433
FUNDING, THAT WILL BECOME

557
00:20:02,433 --> 00:20:03,668
IMPORTANT.

558
00:20:03,668 --> 00:20:04,169
WITHIN THE CONGRESSIONAL

559
00:20:04,169 --> 00:20:06,037
JUSTIFICATION, THERE IS A

560
00:20:06,037 --> 00:20:09,007
REQUEST FOR NIH TO USE 50% OF

561
00:20:09,007 --> 00:20:10,208
CURRENT YEAR OF OBLIGATED FUNDS

562
00:20:10,208 --> 00:20:12,510
AND NEXT YEAR OF OBLIGATED

563
00:20:12,510 --> 00:20:13,378
FUNDS, MULTI-YEAR FUNDING.

564
00:20:13,378 --> 00:20:15,914
FOR THOSE WHO ARE NOT FAMILIAR

565
00:20:15,914 --> 00:20:17,015
WITH MULTI-YEAR FUNDING,

566
00:20:17,015 --> 00:20:17,882
MULTI-YEAR FUNDING PROVIDES

567
00:20:17,882 --> 00:20:19,450
FUNDS FOR MULTIPLE YEARS OF A

568
00:20:19,450 --> 00:20:21,953
GRANT AWARD IN ONE YEAR.

569
00:20:21,953 --> 00:20:23,454
SO, THE CONS ARE IT'S EXPENSIVE

570
00:20:23,454 --> 00:20:28,059
IN THE YEAR OF OBLIGATION,

571
00:20:28,059 --> 00:20:29,894
LIMITS TOTAL AWARDS IN THAT FYF

572
00:20:29,894 --> 00:20:32,664
YOU HAVE THE SAME OR LESS MONEY

573
00:20:32,664 --> 00:20:36,067
BUT MORE UP FRONT CAN YOU DO THE

574
00:20:36,067 --> 00:20:36,267
MATH.

575
00:20:36,267 --> 00:20:37,602
YOU GET THE PICTURE.

576
00:20:37,602 --> 00:20:40,205
THE PRO IS THAT IT OFFERS MORE

577
00:20:40,205 --> 00:20:41,873
FLEXIBILITY IN THE OUT YEARS.

578
00:20:41,873 --> 00:20:43,608
WE'VE DONE A QUICK PICTORIAL TO

579
00:20:43,608 --> 00:20:46,110
SHOW YOU WHAT THE DIFFERENCES

580
00:20:46,110 --> 00:20:46,277
ARE.

581
00:20:46,277 --> 00:20:49,414
SO, NORMAL IS ON THE LEFT.

582
00:20:49,414 --> 00:20:50,582
THAT'S OUR ANNUAL FUNDING.

583
00:20:50,582 --> 00:20:51,616
FOR THOSE FAMILIAR WITH THE

584
00:20:51,616 --> 00:20:54,752
PROCESS YOU WOULD GET A SPECIFIC

585
00:20:54,752 --> 00:20:58,723
OBLIGATION PER YEAR AND SO LET'S

586
00:20:58,723 --> 00:21:01,593
SAY 400 OR $500,000 FOR FIVE

587
00:21:01,593 --> 00:21:04,195
YEARS OF THE R01 GRANT.

588
00:21:04,195 --> 00:21:05,096
MULTI-YEAR FUNDING WHAT WOULD

589
00:21:05,096 --> 00:21:06,931
HAPPEN IS THAT YOU WOULD EITHER

590
00:21:06,931 --> 00:21:09,334
GET THE FIRST THREE YEARS OR ALL

591
00:21:09,334 --> 00:21:10,868
FIVE YEARS OF COMPETING FUNDS IN

592
00:21:10,868 --> 00:21:14,038
YEAR ONE, OR WE CAN ALSO ALLOW

593
00:21:14,038 --> 00:21:15,807
FOR MULTI-YEAR FUNDING IN THE

594
00:21:15,807 --> 00:21:18,676
NON-COMPETING PHASE OF A GRANT,

595
00:21:18,676 --> 00:21:19,510
MEANING WHEN YOU'RE COMING IN

596
00:21:19,510 --> 00:21:23,781
FOR THE LAST THREE TO FIVE YEARS

597
00:21:23,781 --> 00:21:27,085
WE CAN PROVIDE UPFRONT FUNDING.

598
00:21:27,085 --> 00:21:29,254
68% OF FUNDS ARE RESERVED FOR

599
00:21:29,254 --> 00:21:31,623
NON-COMPETING AWARDS

600
00:21:31,623 --> 00:21:33,291
WHAT WE'RE THINKING THIS YEAR,

601
00:21:33,291 --> 00:21:35,393
ESPECIALLY THIS YEAR, TO THINK

602
00:21:35,393 --> 00:21:38,129
ABOUT HOW WE CAN PROVIDE FUNDS

603
00:21:38,129 --> 00:21:40,331
TO GRANTS IN YEARS 3 THROUGH 5,

604
00:21:40,331 --> 00:21:41,299
THOUGH THERE'S ALSO THE

605
00:21:41,299 --> 00:21:43,401
REQUIREMENT IN THIS BUDGET THAT

606
00:21:43,401 --> 00:21:44,736
WE PROVIDE FULLY FUNDED GRANTS

607
00:21:44,736 --> 00:21:46,371
WHICH WOULD MEAN VERY TO HAVE

608
00:21:46,371 --> 00:21:48,206
IDENTIFY FOR 50% OF OUR BUDGET

609
00:21:48,206 --> 00:21:51,609
THOSE THAT ARE COMING IN AS

610
00:21:51,609 --> 00:21:52,243
COMPETING AWARDS PROVIDING FULL

611
00:21:52,243 --> 00:21:54,345
FUNDING FOR AWARDS FOR THE FULL

612
00:21:54,345 --> 00:21:59,150
PHASE OF THOSE RESEARCH PROJECT

613
00:21:59,150 --> 00:22:00,118
GRANTS.

614
00:22:00,118 --> 00:22:01,452
SO, THERE HAVE BEEN OTHER RECENT

615
00:22:01,452 --> 00:22:05,089
CHALLENGES I WANT TO MAKE YOU

616
00:22:05,089 --> 00:22:06,491
AWARE OF.

617
00:22:06,491 --> 00:22:09,761
AND THIS IS -- LET ME GO BACK,

618
00:22:09,761 --> 00:22:10,762
ONE MORE POINT FOR

619
00:22:10,762 --> 00:22:11,095
CLARIFICATION.

620
00:22:11,095 --> 00:22:14,699
YOU MAY HAVE ALSO HEARD OF

621
00:22:14,699 --> 00:22:17,001
NO-YEAR FUNDS, THAT'S DIFFERENT

622
00:22:17,001 --> 00:22:19,904
THAN MULTI-YEAR FUNDING.

623
00:22:19,904 --> 00:22:21,339
NO-YEAR FUNDS CAN THE SPENT AT

624
00:22:21,339 --> 00:22:23,508
ANY TIME AND DO NOT EXPIRE.

625
00:22:23,508 --> 00:22:25,710
IN MULTI-YEAR FUNDING LIKE IN

626
00:22:25,710 --> 00:22:27,178
REGULAR GRANTS, EVENTUALLY THOSE

627
00:22:27,178 --> 00:22:29,080
DOLLARS EXPIRE, YOU HAVE TO

628
00:22:29,080 --> 00:22:31,049
SPEND THOSE GRANTS OUT.

629
00:22:31,049 --> 00:22:33,251
NO-YEAR FUNDS DO NOT EXPIRE.

630
00:22:33,251 --> 00:22:35,653
THEY HAVE TO BE -- THEY HAVE TO

631
00:22:35,653 --> 00:22:37,522
BE EVENTUALLY OBLIGATED, THEY

632
00:22:37,522 --> 00:22:38,189
CAN BE RESCINDED.

633
00:22:38,189 --> 00:22:40,258
AND THIS DID HAPPEN TO US WITH

634
00:22:40,258 --> 00:22:41,893
SOME OF THE COVID-19 PANDEMIC

635
00:22:41,893 --> 00:22:44,195
FUNDING THAT WAS EVENTUALLY

636
00:22:44,195 --> 00:22:45,063
RESCINDED, SOME NO-YEAR FUNDS

637
00:22:45,063 --> 00:22:45,963
THAT WENT UNSPENT.

638
00:22:45,963 --> 00:22:48,499
TO MAKE SURE FOLKS MAKE THE

639
00:22:48,499 --> 00:22:49,467
DIFFERENTIATION BETWEEN

640
00:22:49,467 --> 00:22:52,537
MULTI-YEAR FUNDING AND NO-YEAR

641
00:22:52,537 --> 00:22:53,171
FUNDING.

642
00:22:53,171 --> 00:22:53,838
APOLOGIES.

643
00:22:53,838 --> 00:22:55,273
SO, WE HAVE HAD RECENT

644
00:22:55,273 --> 00:22:55,573
CHALLENGES.

645
00:22:55,573 --> 00:22:57,342
I WANT TO ADDRESS THESE UP FRONT

646
00:22:57,342 --> 00:22:59,077
SO THAT YOU ALL ARE AWARE SINCE

647
00:22:59,077 --> 00:23:01,946
THIS HAS BEEN IN THE NEWS, YOU

648
00:23:01,946 --> 00:23:05,149
HAVE QUESTIONS ABOUT IT, WE DID

649
00:23:05,149 --> 00:23:07,552
LOSE A NUMBER OF STAFF IN KEY

650
00:23:07,552 --> 00:23:09,487
FUNCTIONAL AREAS AS A RESULT OF

651
00:23:09,487 --> 00:23:10,588
SOME INITIATIVES ONGOING WITH

652
00:23:10,588 --> 00:23:12,557
RESPECT TO REDUCING OUR

653
00:23:12,557 --> 00:23:13,124
WORKFORCE.

654
00:23:13,124 --> 00:23:15,727
THIS WAS THROUGH THE

655
00:23:15,727 --> 00:23:16,627
PROBATIONARY STAFF, FORMAL

656
00:23:16,627 --> 00:23:18,396
REDUCTION IN FORCE, AND THEN

657
00:23:18,396 --> 00:23:19,797
ALSO FOLK TAKING ADVANTAGE OF

658
00:23:19,797 --> 00:23:22,667
PROGRAMS THAT WERE OFFERED FOR

659
00:23:22,667 --> 00:23:25,269
EARLY RETIREMENT, VOLUNTARY

660
00:23:25,269 --> 00:23:25,803
SEPARATION, AND DEFERRED

661
00:23:25,803 --> 00:23:26,237
RESIGNATION.

662
00:23:26,237 --> 00:23:29,307
AND SO WE DID LOSE STAFF IN KEY

663
00:23:29,307 --> 00:23:30,641
AREAS, INCLUDING FOR EXAMPLE

664
00:23:30,641 --> 00:23:32,076
COMMUNICATIONS, SO YOU MAY HAVE

665
00:23:32,076 --> 00:23:33,511
NOTICED OUR WEBSITE IS NOT AS

666
00:23:33,511 --> 00:23:35,346
DYNAMIC AS IT USED TO BE.

667
00:23:35,346 --> 00:23:36,914
WE HAVE BEEN MAINTAINING ITS

668
00:23:36,914 --> 00:23:39,183
FUNCTIONS AS MUCH AS WE CAN.

669
00:23:39,183 --> 00:23:40,918
SIMILARLY IN SOME OF OUR

670
00:23:40,918 --> 00:23:42,720
LEGISLATION AREAS FOR THOSE IN

671
00:23:42,720 --> 00:23:44,355
THE STAKEHOLDER COMMUNITY.

672
00:23:44,355 --> 00:23:45,690
AND WE'VE BEEN TRYING TO COVER

673
00:23:45,690 --> 00:23:47,725
DOWN AS MUCH AS POSSIBLE.

674
00:23:47,725 --> 00:23:50,461
SOME FUNCTIONS THAT WE HAD MAY

675
00:23:50,461 --> 00:23:51,662
BE EVENTUALLY CENTRALIZED AT NIH

676
00:23:51,662 --> 00:23:53,831
OR HHS BUT RIGHT NOW WHAT WE'RE

677
00:23:53,831 --> 00:23:58,035
DOING IS WORKING AS A COMMUNITY

678
00:23:58,035 --> 00:23:59,237
TO MAKE SURE FUNCTIONS ARE

679
00:23:59,237 --> 00:23:59,504
SUPPORTED.

680
00:23:59,504 --> 00:24:01,439
YOU MAY HAVE OTHER QUESTIONS

681
00:24:01,439 --> 00:24:02,840
ABOUT WORKFORCE REDUCTIONS BUT

682
00:24:02,840 --> 00:24:05,610
TO BE HONEST MANY OF THESE ARE

683
00:24:05,610 --> 00:24:07,345
NOT ABLE TO BE DISCUSSED IN

684
00:24:07,345 --> 00:24:09,847
DETAIL AT THIS POINT BECAUSE OF

685
00:24:09,847 --> 00:24:10,948
ONGOING LITIGATION, SO I REALLY

686
00:24:10,948 --> 00:24:12,583
MAY NOT BE ABLE TO ANSWER

687
00:24:12,583 --> 00:24:13,918
QUESTIONS ON THIS BUT JUST

688
00:24:13,918 --> 00:24:16,554
WANTED TO LET YOU KNOW WHERE WE

689
00:24:16,554 --> 00:24:16,988
ARE.

690
00:24:16,988 --> 00:24:18,356
WE DID HAVE SOME OTHER

691
00:24:18,356 --> 00:24:20,691
CHALLENGES THAT WE'RE NOW

692
00:24:20,691 --> 00:24:22,760
WORKING THROUGH SO WE HAD PAUSES

693
00:24:22,760 --> 00:24:31,436
IN AC  ACQUISITION, NOW

694
00:24:31,436 --> 00:24:31,736
RESTARTING.

695
00:24:31,736 --> 00:24:33,304
WE WERE LUCKY TO HAVE OUR

696
00:24:33,304 --> 00:24:33,738
JANUARY COUNCIL.

697
00:24:33,738 --> 00:24:36,040
WE WERE A LITTLE BIT AHEAD THIS

698
00:24:36,040 --> 00:24:37,875
YEAR AND THAT PLAYED TO OUR

699
00:24:37,875 --> 00:24:38,276
ADVANTAGE.

700
00:24:38,276 --> 00:24:41,712
WE DID HAVE PAUSE IN SOME

701
00:24:41,712 --> 00:24:43,014
SCIENTIFIC REVIEWS; THOSE ARE

702
00:24:43,014 --> 00:24:43,915
NOW RESTARTED.

703
00:24:43,915 --> 00:24:45,450
WE'RE ALSO WORKING ON A REQUEST

704
00:24:45,450 --> 00:24:47,618
TO REDUCE OUR NUMBER OF NOTICE

705
00:24:47,618 --> 00:24:48,953
OF FUNDING ANNOUNCEMENTS OR

706
00:24:48,953 --> 00:24:51,589
OPPORTUNITIES,  THAT'S SOMETHING

707
00:24:51,589 --> 00:24:53,224
WE'LL TALK ABOUT AS WE MOVE

708
00:24:53,224 --> 00:24:53,658
FORWARD.

709
00:24:53,658 --> 00:24:55,359
IT'S NOT RIGHT NOW AFFECTING THE

710
00:24:55,359 --> 00:24:58,062
CONCEPTS YOU'LL SEE IN FRONT OF

711
00:24:58,062 --> 00:24:58,396
YOU.

712
00:24:58,396 --> 00:25:02,467
WE ALSO HAVE A NEW POLICY

713
00:25:02,467 --> 00:25:03,768
RELATED TO FOREIGN SUBAWARDS

714
00:25:03,768 --> 00:25:05,636
WITH NEED FOR JUSTIFICATIONS,

715
00:25:05,636 --> 00:25:07,705
AND THIS IS REALLY ABOUT THE

716
00:25:07,705 --> 00:25:11,142
FINALIZATION OF A NEW AWARD

717
00:25:11,142 --> 00:25:15,279
STRUCTURE WHICH IS ANTICIPATED,

718
00:25:15,279 --> 00:25:16,180
IN SEPTEMBER OF 2025.

719
00:25:16,180 --> 00:25:17,949
AND SO I CAN TALK ABOUT THAT IN

720
00:25:17,949 --> 00:25:19,717
A LITTLE BIT MORE DETAIL.

721
00:25:19,717 --> 00:25:24,188
WE ALSO HAVE SOME HOLD ON A

722
00:25:24,188 --> 00:25:25,423
AWARDS AND TERMINATIONS.

723
00:25:25,423 --> 00:25:27,625
THESE ARE THINGS WE'VE BEEN

724
00:25:27,625 --> 00:25:28,693
DEALING WITH DYNAMICALLY.

725
00:25:28,693 --> 00:25:32,129
THE STAFF AT NICHD HAS BEEN

726
00:25:32,129 --> 00:25:34,432
ABSOLUTELY FANTASTIC IN THEIR

727
00:25:34,432 --> 00:25:34,999
FLEXIBILITY, DEDICATION, AND

728
00:25:34,999 --> 00:25:35,933
COMMITMENT TO COMMISSION.

729
00:25:35,933 --> 00:25:38,135
TO BE HONEST WITH YOU, THIS

730
00:25:38,135 --> 00:25:40,004
INSTITUTE HAS DONE A TREMENDOUS

731
00:25:40,004 --> 00:25:41,305
JOB IN BEING NIMBLE AND IT IS A

732
00:25:41,305 --> 00:25:42,940
TESTAMENT TO THE STAFF AND

733
00:25:42,940 --> 00:25:44,141
PROFESSIONALS WE HAVE HERE.

734
00:25:44,141 --> 00:25:46,777
SO I DO WANT TO THANK EVERYBODY

735
00:25:46,777 --> 00:25:49,614
FOR THEIR CONTINUED COMMITMENT

736
00:25:49,614 --> 00:25:50,314
TO MISSION.

737
00:25:50,314 --> 00:25:57,088
I'M GOING BACK ONE MORE ON THIS.

738
00:25:57,088 --> 00:26:01,025
TO FOREIGN SUBAWARDS TO ADDRESS

739
00:26:01,025 --> 00:26:02,059
THAT QUICKLY.

740
00:26:02,059 --> 00:26:04,529
THERE IS A TEMPORARY PAUSE WHILE

741
00:26:04,529 --> 00:26:06,898
WE FINALIZE NEW AWARD STRUCTURE.

742
00:26:06,898 --> 00:26:08,132
SO, WE WILL CONTINUE TO FUND

743
00:26:08,132 --> 00:26:11,202
FOREIGN COMPONENTS BUT THEY WILL

744
00:26:11,202 --> 00:26:12,603
BE STRUCTURED IN INDEPENDENT

745
00:26:12,603 --> 00:26:13,638
SUBPROJECTS UNDER PRIME AWARD.

746
00:26:13,638 --> 00:26:15,940
THIS HAS TO DO WITH FISCAL

747
00:26:15,940 --> 00:26:16,541
TRACKING.

748
00:26:16,541 --> 00:26:19,544
DOES NOT APPLY TO FOREIGN

749
00:26:19,544 --> 00:26:20,545
CONSULTANTS OR PURCHASING

750
00:26:20,545 --> 00:26:20,811
SUPPLIES.

751
00:26:20,811 --> 00:26:22,179
THERE'S A GUIDE NOTICE OUT ON

752
00:26:22,179 --> 00:26:22,513
THIS.

753
00:26:22,513 --> 00:26:26,350
WE CAN SEND YOU THE LINK IN THE

754
00:26:26,350 --> 00:26:26,984
CHAT.

755
00:26:26,984 --> 00:26:28,886
BUT WE WILL EFFECTIVE MAY 1,

756
00:26:28,886 --> 00:26:30,521
THIS IS LISTED IN THE GUIDE

757
00:26:30,521 --> 00:26:33,791
NOTICE NOT ISSUE AWARDS TO

758
00:26:33,791 --> 00:26:34,892
DOMESTIC OR FOREIGN AWARDS

759
00:26:34,892 --> 00:26:35,760
INCLUDING SUBAWARD.

760
00:26:35,760 --> 00:26:41,799
WE WILL NOT ACCEPT PRIOR

761
00:26:41,799 --> 00:26:43,334
APPROVAL REQUESTS TO ADD NEW

762
00:26:43,334 --> 00:26:43,568
AWARD.

763
00:26:43,568 --> 00:26:49,574
WE'LL TRY TO NEGOTIATE WHEN NEW

764
00:26:49,574 --> 00:26:51,242
RENEWING, AND WE'LL ALLOW FUNDS

765
00:26:51,242 --> 00:26:54,745
TO BE BUDGETED WHEN WORK CAN BE

766
00:26:54,745 --> 00:26:56,047
PERFORMED DOMESTICALLY AND WE'LL

767
00:26:56,047 --> 00:26:58,182
BE ABLE TO NEGOTIATE BILATERAL

768
00:26:58,182 --> 00:27:00,851
TERMINATIONS IF A PROJECT IS NO

769
00:27:00,851 --> 00:27:02,520
LONGER VIABLE WITHOUT A FOREIGN

770
00:27:02,520 --> 00:27:02,787
SUBAWARD.

771
00:27:02,787 --> 00:27:04,155
WE'RE WORKING FOR THOSE WORKING

772
00:27:04,155 --> 00:27:05,890
ON CLINICAL TRIALS THAT ARE

773
00:27:05,890 --> 00:27:08,092
AFFECTED BY THIS POLICY WE'RE

774
00:27:08,092 --> 00:27:10,828
NOW WORKING WITH OER AND NIH

775
00:27:10,828 --> 00:27:13,130
O.D. HOW TO ADDRESS THOSE AND

776
00:27:13,130 --> 00:27:15,199
HOPE HAVE HAVE A POLICY OUT OR

777
00:27:15,199 --> 00:27:17,368
SOMETHING THAT WE CAN WORK WITH

778
00:27:17,368 --> 00:27:22,873
YOU ALL ON IN THE NEAR FUTURE.

779
00:27:22,873 --> 00:27:25,543
I WANT TO GIVE A COUPLE OF

780
00:27:25,543 --> 00:27:26,711
PROGRAM UPDATES.

781
00:27:26,711 --> 00:27:29,547
THERE IS A NEW OFFICE THAT'S

782
00:27:29,547 --> 00:27:30,414
BEEN ESTABLISHED AGAIN WITHIN

783
00:27:30,414 --> 00:27:30,681
DPCPSI.

784
00:27:30,681 --> 00:27:32,617
AND THIS IS AN INITIATIVE TO

785
00:27:32,617 --> 00:27:34,685
DEVELOP AND EXPAND USE OF

786
00:27:34,685 --> 00:27:35,086
NON-ANIMAL MODELS.

787
00:27:35,086 --> 00:27:39,490
THIS IS THE OFFICE OF RESEARCH

788
00:27:39,490 --> 00:27:39,991
INNOVATION, VALIDATION,

789
00:27:39,991 --> 00:27:41,058
APPLICATION WITHIN THE NIH

790
00:27:41,058 --> 00:27:43,894
OFFICE OF THE DIRECTOR, ORIVA.

791
00:27:43,894 --> 00:27:50,701
IT WILL COORDINATE EFFORTS TO

792
00:27:50,701 --> 00:27:52,470
DEVELOP AND VALIDATE NON-ANIMAL

793
00:27:52,470 --> 00:27:54,772
APPROACHES, ALONE OR IN

794
00:27:54,772 --> 00:27:55,640
COMBINATION, INCLUDING

795
00:27:55,640 --> 00:27:59,443
ORGANOIDS, TISSUE CHIPS, OTHER

796
00:27:59,443 --> 00:28:01,145
IN VITRO SYSTEMS.

797
00:28:01,145 --> 00:28:02,546
COMPUTATIONAL MODELS, AND REAL

798
00:28:02,546 --> 00:28:03,180
WORLD DATA.

799
00:28:03,180 --> 00:28:04,415
THIS IS NOT TO REPLACE ANIMAL

800
00:28:04,415 --> 00:28:05,216
MODELS, NOT RESTRICTING USE OF

801
00:28:05,216 --> 00:28:05,716
ANIMAL MODELS.

802
00:28:05,716 --> 00:28:09,587
THIS IS JUST AN INITIATIVE TO

803
00:28:09,587 --> 00:28:13,290
ADVANCE THESE METHODS AS

804
00:28:13,290 --> 00:28:13,991
ALTERNATIVES.

805
00:28:13,991 --> 00:28:18,562
I WENT THROUGH THIS ALREADY.

806
00:28:18,562 --> 00:28:20,531
I FORGOT.

807
00:28:20,531 --> 00:28:23,167
I APOLOGIZE.

808
00:28:23,167 --> 00:28:26,437
THE LAST ONE IS THE NEW POLICIES

809
00:28:26,437 --> 00:28:27,972
RELATED TO EARLY CAREER

810
00:28:27,972 --> 00:28:29,740
RESEARCHERS, I WANT TO MAKE SURE

811
00:28:29,740 --> 00:28:30,608
EVERYONE IS AWARE BECAUSE YOU

812
00:28:30,608 --> 00:28:32,677
ALL MAY HAVE FOLKS IN YOUR

813
00:28:32,677 --> 00:28:34,111
NETWORK WHERE THEY HAVE BEEN

814
00:28:34,111 --> 00:28:34,378
AFFECTED.

815
00:28:34,378 --> 00:28:36,614
I WANT TO MAKE SURE THESE

816
00:28:36,614 --> 00:28:38,616
POLICIES ARE HIGHLIGHTED FOR

817
00:28:38,616 --> 00:28:39,617
YOU.

818
00:28:39,617 --> 00:28:43,254
SO, NIH HAS GRANTED THE

819
00:28:43,254 --> 00:28:44,522
AUTOMATIC EXTENSION OF

820
00:28:44,522 --> 00:28:45,156
EARLY-STAGE INVESTIGATOR

821
00:28:45,156 --> 00:28:51,529
ELIGIBILITY, ONE, TWO, OR THREE

822
00:28:51,529 --> 00:28:52,496
CYCLES.

823
00:28:52,496 --> 00:28:55,332
THESE POLICIES ARE HERE FOR

824
00:28:55,332 --> 00:28:57,334
EFIs WITHIN TEN YEARS OF

825
00:28:57,334 --> 00:28:58,402
COMPLETING TERMINAL RESEARCH

826
00:28:58,402 --> 00:29:02,339
DEGREE OR END OF POST GRADUATE

827
00:29:02,339 --> 00:29:06,177
CLINICAL TRAINING, NOT COMPETED

828
00:29:06,177 --> 00:29:07,478
FOR NIH RESEARCH AWARDS, THIS IS

829
00:29:07,478 --> 00:29:08,579
AN AUTOMATIC EXTENSION.

830
00:29:08,579 --> 00:29:11,215
THESE FOLKS DO NOT NEED TO TAKE

831
00:29:11,215 --> 00:29:18,322
ACTION OR SUBMIT REQUEST FOR

832
00:29:18,322 --> 00:29:19,190
EXTENSION.

833
00:29:19,190 --> 00:29:20,191
THERE'S EXTENDED ELIGIBILITY FOR

834
00:29:20,191 --> 00:29:22,059
SOME K AWARDS.

835
00:29:22,059 --> 00:29:25,096
IN THIS INSTANCE, IF A MENTORED

836
00:29:25,096 --> 00:29:26,764
CAREER DEVELOPMENT AWARDEE HAD

837
00:29:26,764 --> 00:29:29,700
AN AWARD THAT PREMATURELY ENDED

838
00:29:29,700 --> 00:29:31,435
ON OR AFTER JANUARY 21, 2025,

839
00:29:31,435 --> 00:29:33,637
THIS ALLOWS INDIVIDUALS TO BE

840
00:29:33,637 --> 00:29:38,876
ELIGIBLE TO APPLY FOR NEW 

841
00:29:38,876 --> 00:29:39,643
MENTORED CAREER DEVELOPMENT

842
00:29:39,643 --> 00:29:42,179
AWARD WHO MEET ALL OUR NIH

843
00:29:42,179 --> 00:29:44,415
REQUIREMENTS FOR MENTORED CAREER

844
00:29:44,415 --> 00:29:46,217
AWARDS AND THIS WILL ENABLE

845
00:29:46,217 --> 00:29:48,085
COMPLETION OF CAREER DEVELOPMENT

846
00:29:48,085 --> 00:29:50,821
GOALS AND PROGRESSION TOWARDS

847
00:29:50,821 --> 00:29:52,456
RESEARCH INDEPENDENCE.

848
00:29:52,456 --> 00:29:53,991
INVESTIGATORS PREVIOUSLY AWARDED

849
00:29:53,991 --> 00:29:54,859
COMPETING OR NON-COMPETING

850
00:29:54,859 --> 00:29:56,827
CONTINUATION CAREER DEVELOPMENT

851
00:29:56,827 --> 00:29:59,997
AWARDS THAT PREMATURELY ENDED ON

852
00:29:59,997 --> 00:30:01,966
OR AFTER JANUARY, 2025, WHY IS

853
00:30:01,966 --> 00:30:02,333
THAT IMPORTANT?

854
00:30:02,333 --> 00:30:03,634
WHAT WE TELL PEOPLE ONCE YOU'VE

855
00:30:03,634 --> 00:30:05,836
HAD ONE K YOU CAN'T HAVE ANOTHER

856
00:30:05,836 --> 00:30:07,271
K.

857
00:30:07,271 --> 00:30:17,681
IN THIS INSTANCE THAT IS

858
00:30:17,681 --> 00:30:18,115
ACCEPTED.

859
00:30:18,115 --> 00:30:22,620
I SPOKE QUICKLY AND MAYBE BOUGHT

860
00:30:22,620 --> 00:30:33,164
SOME TIME BACK ON THE AGENDA BUT

861
00:30:34,198 --> 00:30:35,666
I'LL OPEN FOR QUESTIONS.

862
00:30:35,666 --> 00:30:37,301
I CAN SEE THE SCREEN NOW AND MAY

863
00:30:37,301 --> 00:30:41,872
BE ABLE TO CALL ON YOU

864
00:30:41,872 --> 00:30:47,044
POTENTIALLY. 

865
00:30:47,044 --> 00:30:47,311
MARCELLE?

866
00:30:47,311 --> 00:30:50,314
>>  YES, THANK YOU SO MUCH
FOR

867
00:30:50,314 --> 00:30:51,649
THAT OVERSIGHT.

868
00:30:51,649 --> 00:30:54,385
I WAS JUST WONDERING IF THERE'S

869
00:30:54,385 --> 00:30:56,453
ANY IDEA HOW MUCH OF AN IMPACT

870
00:30:56,453 --> 00:30:57,655
THIS MULTI-YEAR FUNDING IS GOING

871
00:30:57,655 --> 00:30:59,723
TO HAVE IN THE FIRST SEVERAL

872
00:30:59,723 --> 00:30:59,957
YEARS.

873
00:30:59,957 --> 00:31:03,460
I'M VERY CONCERNED ABOUT THAT,

874
00:31:03,460 --> 00:31:05,329
GIVEN BOTH THE REDUCTION IN

875
00:31:05,329 --> 00:31:06,163
TOTAL AMOUNT OF REVENUE TO THE

876
00:31:06,163 --> 00:31:10,601
INSTITUTE OR INCOME TO THE

877
00:31:10,601 --> 00:31:14,138
INSTITUTE AND THEN THIS PLAYING

878
00:31:14,138 --> 00:31:15,139
DOWN FURTHER THAT THE FUNDING

879
00:31:15,139 --> 00:31:16,874
LEVEL IS GOING TO BE QUITE LOW.

880
00:31:16,874 --> 00:31:18,175
>> GOOD QUESTION.

881
00:31:18,175 --> 00:31:19,276
REMEMBER FIRST THAT THE

882
00:31:19,276 --> 00:31:21,045
PRESIDENT'S BUDGET, BUDGET IN

883
00:31:21,045 --> 00:31:22,246
BRIEF AND CONGRESSIONAL

884
00:31:22,246 --> 00:31:23,614
JUSTIFICATION, THOSE ARE

885
00:31:23,614 --> 00:31:24,648
PROPOSALS, RIGHT?

886
00:31:24,648 --> 00:31:26,884
40% CUT IN BUDGET IS A PROPOSAL

887
00:31:26,884 --> 00:31:28,352
FROM THE PRESIDENT.

888
00:31:28,352 --> 00:31:30,654
THIS IS NOW IN THE CONGRESS FOR

889
00:31:30,654 --> 00:31:31,255
THEIR CONSIDERATION.

890
00:31:31,255 --> 00:31:33,157
AND THEY ARE THE ONES THAT SET

891
00:31:33,157 --> 00:31:33,958
THE APPROPRIATION LEVEL.

892
00:31:33,958 --> 00:31:35,359
SO WITH RESPECT TO THE BUDGET

893
00:31:35,359 --> 00:31:37,995
CUT REMEMBER THAT IS A PROPOSAL.

894
00:31:37,995 --> 00:31:39,797
I THINK THE MULTI-YEAR FUNDING,

895
00:31:39,797 --> 00:31:40,598
YOU ARE CORRECT.

896
00:31:40,598 --> 00:31:43,133
THAT'S WHAT I LAID OUT.

897
00:31:43,133 --> 00:31:44,535
EVEN IN THE SITUATION IN WHICH

898
00:31:44,535 --> 00:31:47,471
WE DO NOT HAVE A BUDGET CUT, IF

899
00:31:47,471 --> 00:31:49,573
WE HAVE TO SPEND MORE IN

900
00:31:49,573 --> 00:31:50,474
MULTI-YEAR FUNDING UP FRONT

901
00:31:50,474 --> 00:31:51,542
THERE WILL BE A NATURAL

902
00:31:51,542 --> 00:31:53,410
REDUCTION IN THE NUMBER OF

903
00:31:53,410 --> 00:31:56,914
AWARDS THAT WE ARE ABLE TO

904
00:31:56,914 --> 00:31:57,781
ISSUE.

905
00:31:57,781 --> 00:31:59,416
THAT'S AS WE LIKE TO SAY THAT'S

906
00:31:59,416 --> 00:32:00,184
JUST MATH, RIGHT?

907
00:32:00,184 --> 00:32:02,152
IF YOU HAVE MORE MONEY GOING OUT

908
00:32:02,152 --> 00:32:04,989
UP FRONT YOU'LL HAVE TO DO LESS

909
00:32:04,989 --> 00:32:05,222
AWARDS.

910
00:32:05,222 --> 00:32:06,991
AND THAT IS REFLECTED IN THE

911
00:32:06,991 --> 00:32:09,493
BUDGET TABLES THAT ARE IN OUR

912
00:32:09,493 --> 00:32:13,831
CONGRESSIONAL JUSTIFICATION TO

913
00:32:13,831 --> 00:32:17,968
SOME EXTENT. 

914
00:32:17,968 --> 00:32:19,370
>> DR. JABS HAS A
QUESTION.

915
00:32:19,370 --> 00:32:22,439
DO YOU HAVE INFORMATION

916
00:32:22,439 --> 00:32:24,208
REGARDING CHANGES IN INDIRECT

917
00:32:24,208 --> 00:32:24,541
COST RATES?

918
00:32:24,541 --> 00:32:25,943
>>  THANK YOU, DR. JABS.

919
00:32:25,943 --> 00:32:28,679
I THINK BOTTOM LINE IS THAT'S,

920
00:32:28,679 --> 00:32:31,081
AGAIN, A PROPOSAL TO MOVE

921
00:32:31,081 --> 00:32:32,716
INDIRECT COST RATE TO 15%,

922
00:32:32,716 --> 00:32:35,119
REFLECTED IN THE NIH

923
00:32:35,119 --> 00:32:36,120
CONGRESSIONAL JUSTIFICATION.

924
00:32:36,120 --> 00:32:38,088
AND, AGAIN, THAT IS SOMETHING

925
00:32:38,088 --> 00:32:40,491
THAT IS ACTUALLY IN STATUTE, THE

926
00:32:40,491 --> 00:32:41,792
INDIRECT COST IS A CALCULATION

927
00:32:41,792 --> 00:32:42,459
IN STATUTE.

928
00:32:42,459 --> 00:32:44,962
SO THAT'S, AGAIN, SOMETHING THAT

929
00:32:44,962 --> 00:32:46,830
WOULD HAVE TO BE PROPOSED BY

930
00:32:46,830 --> 00:32:49,800
CONGRESS OR CHANGED BY CONGRESS 

931
00:32:49,800 --> 00:33:00,144
AS I UNDERSTAND IT.

932
00:33:05,616 --> 00:33:08,485
OTHER QUESTIONS? 

933
00:33:08,485 --> 00:33:10,454
TRISHA HAS A QUESTION ABOUT

934
00:33:10,454 --> 00:33:11,555
NO-YEAR FUNDS.

935
00:33:11,555 --> 00:33:11,789
TRISHA?

936
00:33:11,789 --> 00:33:13,958
>> YEAH, AM I AUDIBLE NOW?

937
00:33:13,958 --> 00:33:15,059
OH, THANK YOU.

938
00:33:15,059 --> 00:33:16,927
YEAH, OKAY.

939
00:33:16,927 --> 00:33:19,063
SO, JUST FOR CLARIFICATION,

940
00:33:19,063 --> 00:33:20,998
REGARDING NO-YEAR FUNDS, IS THIS

941
00:33:20,998 --> 00:33:23,400
THE IDEA THAT IT'S -- THERE'S

942
00:33:23,400 --> 00:33:25,836
CURRENT YEAR, PRIOR YEAR, AND

943
00:33:25,836 --> 00:33:30,307
THEN THERE IS -- IT HAS TO GET

944
00:33:30,307 --> 00:33:32,176
RETURNED TO THE TREASURY IN YEAR

945
00:33:32,176 --> 00:33:36,347
3, AM I UNDERSTANDING THE WINDOW

946
00:33:36,347 --> 00:33:36,880
CORRECTLY?

947
00:33:36,880 --> 00:33:38,082
>> CURRENTLY WHAT WE DO IN
TODAY

948
00:33:38,082 --> 00:33:39,950
TIMES IS THAT WE'RE USING

949
00:33:39,950 --> 00:33:41,785
CURRENT YEAR FUNDS FOR COMPETING

950
00:33:41,785 --> 00:33:42,853
AND NON-COMPETING.

951
00:33:42,853 --> 00:33:45,656
WE DO OFTEN USE MULTI-YEAR

952
00:33:45,656 --> 00:33:46,323
FUNDS, JUST FOR EVERYBODY'S

953
00:33:46,323 --> 00:33:47,925
KNOWLEDGE NICHD HAS BEEN USING

954
00:33:47,925 --> 00:33:49,493
MULTI-YEAR FUNDS FOR SOME

955
00:33:49,493 --> 00:33:53,297
SMALLER AWARDS.

956
00:33:53,297 --> 00:33:55,065
SO R03S, R21, TRYING TO DO MORE

957
00:33:55,065 --> 00:33:56,500
MULTI-YEAR FUNDING OF THOSE

958
00:33:56,500 --> 00:33:59,870
AWARDS TO GIVE OURSELVES SOME OF

959
00:33:59,870 --> 00:34:00,971
THE OUT-YEAR CUSHION I TALKED

960
00:34:00,971 --> 00:34:01,305
ABOUT.

961
00:34:01,305 --> 00:34:03,374
SO IN THAT INSTANCE WE WOULD

962
00:34:03,374 --> 00:34:04,908
ALLOW FOR MULTI-YEAR FUNDING, WE

963
00:34:04,908 --> 00:34:07,211
WOULD GIVE ALL THE MONEY UP

964
00:34:07,211 --> 00:34:09,179
FRONT FOR MULTI-YEAR.

965
00:34:09,179 --> 00:34:09,947
FOR THE INSTANCES WHICH YOU'RE

966
00:34:09,947 --> 00:34:11,281
TALKING ABOUT WHERE WE GET

967
00:34:11,281 --> 00:34:12,916
OUTSIDE OF CURRENT YEAR FUNDING

968
00:34:12,916 --> 00:34:14,318
AND OBLIGATE THE MONEY, LET'S

969
00:34:14,318 --> 00:34:16,520
SAY YOU HAVE A FOUR-YEAR AWARD

970
00:34:16,520 --> 00:34:17,821
OR FIVE-YEAR AWARD AND WE GIVE

971
00:34:17,821 --> 00:34:21,558
YOU ALL THE MONEY IN YEAR ONE.

972
00:34:21,558 --> 00:34:22,659
THERE ARE SOME RESTRICTIONS IN

973
00:34:22,659 --> 00:34:24,828
THE TIME BY WHICH THAT MONEY

974
00:34:24,828 --> 00:34:25,062
EXPIRES.

975
00:34:25,062 --> 00:34:26,663
IT'S USUALLY FIVE YEARS.

976
00:34:26,663 --> 00:34:28,332
AND SO WHAT WE WOULD HAVE TO DO

977
00:34:28,332 --> 00:34:29,967
IN THAT INSTANCE IS MAKE SURE

978
00:34:29,967 --> 00:34:31,368
THAT FOLKS ARE SPENDING DOWN

979
00:34:31,368 --> 00:34:32,836
THEIR BUDGET BECAUSE WE'LL HAVE

980
00:34:32,836 --> 00:34:35,439
LIMITED ABILITY TO GIVE YOU A NO

981
00:34:35,439 --> 00:34:36,974
COST EXTENSION THAT WOULD ALLOW

982
00:34:36,974 --> 00:34:38,942
FOR YOU TO CONTINUE OUT.

983
00:34:38,942 --> 00:34:40,711
I THINK IF WE NEED MORE DETAIL

984
00:34:40,711 --> 00:34:44,314
ON THIS I MIGHT HAVE TO ASK OUR

985
00:34:44,314 --> 00:34:45,049
BUDGET OFFICER, ALEXIS CLARK, TO

986
00:34:45,049 --> 00:34:45,649
HELP ME.

987
00:34:45,649 --> 00:34:46,950
BUT THAT'S GOING TO BE A LITTLE

988
00:34:46,950 --> 00:34:48,152
BIT DIFFERENT BECAUSE IF YOU

989
00:34:48,152 --> 00:34:51,588
GIVE ALL THE MONEY FOR FIVE-YEAR

990
00:34:51,588 --> 00:34:53,424
UP FRONT, THERE WILL BE SOME

991
00:34:53,424 --> 00:34:54,625
ISSUES WITH THE MONEY EXPIRING.

992
00:34:54,625 --> 00:34:57,327
IN THE CASE OF NO-YEAR FUNDING,

993
00:34:57,327 --> 00:34:58,896
RIGHT, THAT'S NOT WHAT WE

994
00:34:58,896 --> 00:35:00,631
USUALLY USE, IT'S USUALLY UNDER

995
00:35:00,631 --> 00:35:03,467
A SPECIFIC AUTHORITY THAT WE

996
00:35:03,467 --> 00:35:06,437
WOULD ALLOW -- BE ALLOWED TO USE

997
00:35:06,437 --> 00:35:08,072
NO-YEAR FUNDING THOSE DOLLARS DO

998
00:35:08,072 --> 00:35:09,373
NOT EXPIRE BUT EVENTUALLY

999
00:35:09,373 --> 00:35:11,275
CONGRESS CAN SAY IF YOU HAVEN'T

1000
00:35:11,275 --> 00:35:13,544
UTILIZED THOSE FUNDS WE WILL

1001
00:35:13,544 --> 00:35:15,112
RESCIND THEM.

1002
00:35:15,112 --> 00:35:18,582
SO, I KNOW IT'S A LOT OF

1003
00:35:18,582 --> 00:35:18,882
FISCAL-ESE.

1004
00:35:18,882 --> 00:35:19,817
AND I'M STILL TRYING TO MAKE

1005
00:35:19,817 --> 00:35:21,785
SURE IT'S ALL STRAIGHT IN MY

1006
00:35:21,785 --> 00:35:23,620
HEAD, TO BE HONEST, BECAUSE

1007
00:35:23,620 --> 00:35:25,722
THERE'S A LOT OF TERMS BEING

1008
00:35:25,722 --> 00:35:26,924
THROWN AROUND BUT WANT TO MAKE

1009
00:35:26,924 --> 00:35:29,026
SURE YOU UNDERSTAND THE LANGUAGE

1010
00:35:29,026 --> 00:35:31,862
RELATED TO THIS BECAUSE IT IS

1011
00:35:31,862 --> 00:35:35,265
CHANGING.

1012
00:35:35,265 --> 00:35:37,668
>> DO YOU WANT TO COME OFF
MUTE

1013
00:35:37,668 --> 00:35:39,636
AND SHARE YOUR COMMENT ABOUT

1014
00:35:39,636 --> 00:35:40,037
MULTI-YEAR FUNDS?

1015
00:35:40,037 --> 00:35:40,938
>> YEAH, HI.

1016
00:35:40,938 --> 00:35:45,542
I JUST WANTED TO COMMENT THAT

1017
00:35:45,542 --> 00:35:47,311
THE DoD, WE ONLY USE

1018
00:35:47,311 --> 00:35:48,045
MULTI-YEAR FUNDING.

1019
00:35:48,045 --> 00:35:50,347
THE NUMBER OF AWARDS IS LESS UP

1020
00:35:50,347 --> 00:35:55,686
FRONT THAN WHAT YOU WOULD ALL

1021
00:35:55,686 --> 00:35:57,454
NORMALLY BE USED TO, IT DOESN'T

1022
00:35:57,454 --> 00:36:00,657
PUT THE PROJECTS AS RISK.

1023
00:36:00,657 --> 00:36:06,430
IN FY 25, WE GOT 57% CUT BUT

1024
00:36:06,430 --> 00:36:07,664
PROJECTS FUNDED IN FY 24 AND

1025
00:36:07,664 --> 00:36:09,399
PRIOR YEARS ARE SAFE.

1026
00:36:09,399 --> 00:36:10,367
SO, THAT'S ONE CONSOLATION.

1027
00:36:10,367 --> 00:36:12,603
I WANTED TO PUT IT OUT THERE.

1028
00:36:12,603 --> 00:36:15,639
AND THE OTHER THING IS FOR THOSE

1029
00:36:15,639 --> 00:36:16,640
PROJECTS FUNDED WITH MULTI-YEAR

1030
00:36:16,640 --> 00:36:18,142
WE DO HAVE A SMALL NUMBER OF

1031
00:36:18,142 --> 00:36:20,677
THOSE THAT HAVE AN OPTION BUILT

1032
00:36:20,677 --> 00:36:23,747
IN SO YOU FUND ONLY UP UNTIL A

1033
00:36:23,747 --> 00:36:25,382
CERTAIN POINT THAT'S SEVERABLE

1034
00:36:25,382 --> 00:36:31,622
IN CASE YOU DON'T GET LATER YEAR

1035
00:36:31,622 --> 00:36:33,257
FUNDS BUT COMMITTED FOR A FIVE

1036
00:36:33,257 --> 00:36:34,791
YEAR PERIOD BUT THERE MIGHT BE A

1037
00:36:34,791 --> 00:36:35,993
SEVERABLE PERIOD SO YOU BUILD IN

1038
00:36:35,993 --> 00:36:37,861
AN OPTION SO IN CASE YOU DON'T

1039
00:36:37,861 --> 00:36:41,365
HAVE THE FUNDS YOU CAN KIND OF

1040
00:36:41,365 --> 00:36:43,100
STEP OUT.

1041
00:36:43,100 --> 00:36:43,300
OVER.

1042
00:36:43,300 --> 00:36:44,568
>> THANK YOU, GAYLE.

1043
00:36:44,568 --> 00:36:46,203
THE OTHER THING, YOU KNOW, WE'VE

1044
00:36:46,203 --> 00:36:49,373
BEEN ALSO TALKING ABOUT HOW DO

1045
00:36:49,373 --> 00:36:51,375
WE USE FUNDING STRATEGY AS A WAY

1046
00:36:51,375 --> 00:36:54,211
TO HELP FOLKS IN TERMS OF EITHER

1047
00:36:54,211 --> 00:36:55,379
PHASING AWARDS OR THINKING

1048
00:36:55,379 --> 00:36:57,814
THROUGH HOW TO MAKE THINGS A

1049
00:36:57,814 --> 00:36:58,982
LITTLE BIT MORE MANAGEABLE.

1050
00:36:58,982 --> 00:37:00,751
YOU KNOW, ONE OF THE OTHER

1051
00:37:00,751 --> 00:37:02,719
CHALLENGES, I GOT ASKED AT THE

1052
00:37:02,719 --> 00:37:04,154
BOARD OF SCIENTIFIC COUNSELORS

1053
00:37:04,154 --> 00:37:05,822
ON FRIDAY, WHAT DO WE TELL

1054
00:37:05,822 --> 00:37:07,324
YOUNGER TRAINEES WHO MAYBE ARE

1055
00:37:07,324 --> 00:37:08,859
GETTING THEIR FIRST AWARD AND

1056
00:37:08,859 --> 00:37:11,161
WOULD HAVE TO MANAGE AN AWARD IN

1057
00:37:11,161 --> 00:37:13,564
A DIFFERENT FUNDING ENVIRONMENT,

1058
00:37:13,564 --> 00:37:15,599
WHAT WOULD WE DO THERE.

1059
00:37:15,599 --> 00:37:17,768
ONE THING WE TALKED ABOUT WAS

1060
00:37:17,768 --> 00:37:19,937
THINKING THROUGH HOW TO MANAGE

1061
00:37:19,937 --> 00:37:20,704
FOR CONTINGENCIES WHERE THE

1062
00:37:20,704 --> 00:37:22,005
RESEARCH MIGHT NOT BE GOING THE

1063
00:37:22,005 --> 00:37:24,007
WAY YOU WOULD LIKE.

1064
00:37:24,007 --> 00:37:25,742
THINKING THROUGH YOUR PROJECT

1065
00:37:25,742 --> 00:37:27,611
MANAGEMENT, MAKING SURE YOU'RE

1066
00:37:27,611 --> 00:37:28,679
SPENDING DOWN APPROPRIATELY AND

1067
00:37:28,679 --> 00:37:30,314
NOT WAITING TO SPEND DOWN UNTIL

1068
00:37:30,314 --> 00:37:31,215
THE LAST MINUTE.

1069
00:37:31,215 --> 00:37:36,053
AND SO I THINK IN TERMS OF THE

1070
00:37:36,053 --> 00:37:37,521
MANAGEMENT OF FUNDS IT'S GOING

1071
00:37:37,521 --> 00:37:41,391
TO DEPEND WHETHER OR NOT WE'RE

1072
00:37:41,391 --> 00:37:46,763
MORE USING MULTI-YEAR FUNDING SO

1073
00:37:46,763 --> 00:37:48,432
I APPRECIATE WHAT GAYLE SAID,

1074
00:37:48,432 --> 00:37:50,167
THERE ARE ALSO SOME ADVANTAGES,

1075
00:37:50,167 --> 00:37:51,835
AND EFFECTS ON NUMBER AWARDS.

1076
00:37:51,835 --> 00:37:54,004
I THINK DR. JABS ASKED ANOTHER

1077
00:37:54,004 --> 00:37:56,773
QUESTION, I THINK I SAW IT COME

1078
00:37:56,773 --> 00:37:57,074
ACROSS.

1079
00:37:57,074 --> 00:37:58,475
>> DR. JABS, DO YOU WANT
TO COME

1080
00:37:58,475 --> 00:38:00,510
OFF MUTE AND ASK YOUR QUESTION?

1081
00:38:00,510 --> 00:38:01,778
>> YEAH, THAT'S FINE.

1082
00:38:01,778 --> 00:38:04,548
THANK YOU.

1083
00:38:04,548 --> 00:38:07,618
I'M JUST WONDERING THEN IN LIGHT

1084
00:38:07,618 --> 00:38:09,586
OF YOUR DISCUSSIONS NO-COST

1085
00:38:09,586 --> 00:38:10,420
EXTENSIONS AND CARRY-FORWARD IS

1086
00:38:10,420 --> 00:38:12,222
NOT GOING TO BE OPTIONS IN THE

1087
00:38:12,222 --> 00:38:12,456
FUTURE?

1088
00:38:12,456 --> 00:38:14,024
>> I THINK THAT'S GOING TO

1089
00:38:14,024 --> 00:38:15,959
DEPEND, DR. JABS, ON THE LENGTH

1090
00:38:15,959 --> 00:38:18,996
OF THE AWARD, MECHANISM FOR THE

1091
00:38:18,996 --> 00:38:23,500
AWARD, AND WHEN THE FUNDS ARE

1092
00:38:23,500 --> 00:38:23,734
ISSUED.

1093
00:38:23,734 --> 00:38:25,702
AND SO IF THIS IS THE MODEL WE

1094
00:38:25,702 --> 00:38:27,337
MOVE TO WE MAY INCLUDE SOMETHING

1095
00:38:27,337 --> 00:38:28,872
IN THE SEPTEMBER MEETING TO

1096
00:38:28,872 --> 00:38:31,575
BETTER EXPLAIN WHAT THE IMPACT

1097
00:38:31,575 --> 00:38:34,111
WILL BE IN MORE BROAD TERMS.

1098
00:38:34,111 --> 00:38:34,878
RIGHT NOW WE'RE TRYING TO

1099
00:38:34,878 --> 00:38:36,179
DETERMINE EXTENT TO WHICH WE

1100
00:38:36,179 --> 00:38:38,048
NEED TO USE THIS AND HOW WE NEED

1101
00:38:38,048 --> 00:38:39,249
TO USE THIS, SOMETHING WE'RE

1102
00:38:39,249 --> 00:38:41,051
WORKING WITH THE OFFICE OF

1103
00:38:41,051 --> 00:38:42,185
BUDGET ON.

1104
00:38:42,185 --> 00:38:43,320
AND SO I THINK THIS IS SOMETHING

1105
00:38:43,320 --> 00:38:44,821
THAT WE MAY HAVE TO FOLLOW BACK

1106
00:38:44,821 --> 00:38:46,923
UP WITH YOU ALL ON, ON THE

1107
00:38:46,923 --> 00:38:51,762
SPECIFIC DETAILS AS WE SEE THE

1108
00:38:51,762 --> 00:38:53,130
IMPLEMENTATION OF THIS ROLLOUT.

1109
00:38:53,130 --> 00:38:59,069
>> DR. CEDARS HAS A
QUESTION.

1110
00:38:59,069 --> 00:38:59,336
>> YES.

1111
00:38:59,336 --> 00:39:01,805
YOU HAD MENTIONED IMPACT ON

1112
00:39:01,805 --> 00:39:04,007
FIRST-TIME AWARDEES WITH THIS

1113
00:39:04,007 --> 00:39:05,309
MULTI-YEAR AND POTENTIALLY

1114
00:39:05,309 --> 00:39:07,844
DIFFICULTY MANAGING BUDGET.

1115
00:39:07,844 --> 00:39:09,680
I'M ACTUALLY MORE CONCERNED

1116
00:39:09,680 --> 00:39:13,784
ABOUT THE RISK TO FIRST-TIME

1117
00:39:13,784 --> 00:39:15,619
PEOPLE APPLYING, AND THAT IF IT

1118
00:39:15,619 --> 00:39:17,387
IS HARDER TO GET GRANTS THAT

1119
00:39:17,387 --> 00:39:19,923
WE'RE AT RISK OF CONTINUING TO

1120
00:39:19,923 --> 00:39:22,192
LOSE A GENERATION OF SCIENTISTS

1121
00:39:22,192 --> 00:39:24,661
IN THESE AREAS.

1122
00:39:24,661 --> 00:39:26,296
>> I ABSOLUTELY TAKE YOUR
POINT,

1123
00:39:26,296 --> 00:39:27,264
DR. CEDARS.

1124
00:39:27,264 --> 00:39:28,899
AND I THINK THAT THE -- THE

1125
00:39:28,899 --> 00:39:30,867
THING THAT WE'RE TRYING TO

1126
00:39:30,867 --> 00:39:39,209
MANAGE HERE IS MAKING SURE OUR

1127
00:39:39,209 --> 00:39:40,744
EARLY STAGE INVESTIGATORS, NEW

1128
00:39:40,744 --> 00:39:41,712
INVESTIGATORS, TRAINEES, THIS IS

1129
00:39:41,712 --> 00:39:43,447
WHERE THE BALANCE COMES INTO

1130
00:39:43,447 --> 00:39:44,348
PLAY, RIGHT?

1131
00:39:44,348 --> 00:39:46,316
WE ALSO RECOGNIZE THAT WHEN

1132
00:39:46,316 --> 00:39:47,984
SENIOR INVESTIGATORS ARE ALSO

1133
00:39:47,984 --> 00:39:49,953
IMPACTED, SOME RESOURCES THEY

1134
00:39:49,953 --> 00:39:57,394
RELY ON IN TERMS OF THOSE SENIOR

1135
00:39:57,394 --> 00:40:02,032
INVESTIGATOR FUNDS, ALSO HAVE AN

1136
00:40:02,032 --> 00:40:02,265
IMPACT.

1137
00:40:02,265 --> 00:40:03,667
YOU'RE ALSO TRYING TO LOOK AT

1138
00:40:03,667 --> 00:40:06,303
HOW YOU BALANCE THE ECOSYSTEM,

1139
00:40:06,303 --> 00:40:07,804
AND IT'S DELICATE AS YOU'RE WELL

1140
00:40:07,804 --> 00:40:08,071
AWARE.

1141
00:40:08,071 --> 00:40:10,273
IF WE MAKE A CHANGE IN ONE

1142
00:40:10,273 --> 00:40:11,375
PLACE, IT'S GOING TO AFFECT

1143
00:40:11,375 --> 00:40:14,878
SOMETHING ELSE. 

1144
00:40:14,878 --> 00:40:15,545
IN THE CONGRESSIONAL

1145
00:40:15,545 --> 00:40:18,281
JUSTIFICATION THE BUDGET CUT

1146
00:40:18,281 --> 00:40:20,350
WILL IMPACT TRAINING PROGRAMS,

1147
00:40:20,350 --> 00:40:21,351
NETWORKS, YOU KNOW, RESEARCH

1148
00:40:21,351 --> 00:40:22,786
CENTERS, ET CETERA.

1149
00:40:22,786 --> 00:40:25,088
IT WILL NOT CHANGE THE FUNDING

1150
00:40:25,088 --> 00:40:27,491
MODEL FOR THOSE NECESSARILY.

1151
00:40:27,491 --> 00:40:29,893
SO, THAT IS -- IT'S IN THE

1152
00:40:29,893 --> 00:40:31,328
COMPETING RESEARCH PROJECT GRANT

1153
00:40:31,328 --> 00:40:31,862
LINE WHERE THE MULTI-YEAR

1154
00:40:31,862 --> 00:40:33,663
FUNDING WILL BE AT ISSUE.

1155
00:40:33,663 --> 00:40:37,134
SO, I THINK THIS IS WHERE WE'RE

1156
00:40:37,134 --> 00:40:39,770
GOING TO WORK TO BALANCE FROM

1157
00:40:39,770 --> 00:40:41,538
ECOSYSTEM PERSPECTIVE AND MAKE

1158
00:40:41,538 --> 00:40:43,173
SURE WE'RE PROTECTING THE NEXT

1159
00:40:43,173 --> 00:40:46,042
GENERATION SO THEY HAVE FUNDS TO

1160
00:40:46,042 --> 00:40:47,344
CONTINUE THEIR SCIENCE.

1161
00:40:47,344 --> 00:40:53,049
I THINK I SEE JOSE.

1162
00:40:53,049 --> 00:40:53,517
DR. CONTRERAS-VIDAL?

1163
00:40:53,517 --> 00:40:54,684
>>  THANK YOU.

1164
00:40:54,684 --> 00:40:56,219
I WOULD LIKE TO ASK FOR A BIT

1165
00:40:56,219 --> 00:40:58,288
MORE INFORMATION ABOUT THE NEW

1166
00:40:58,288 --> 00:41:03,994
INITIATIVE OUT OF THE NIH

1167
00:41:03,994 --> 00:41:08,064
DIRECTOR, NON-ANIMAL MODELING

1168
00:41:08,064 --> 00:41:08,832
AND DATA.

1169
00:41:08,832 --> 00:41:09,099
>> YES.

1170
00:41:09,099 --> 00:41:12,302
THIS IS NOW JUST TAKING SHAPE.

1171
00:41:12,302 --> 00:41:13,970
AND SO THE ISSUE HERE IS I THINK

1172
00:41:13,970 --> 00:41:19,443
YOU ALL MAY BE FAMILIAR, THERE'S

1173
00:41:19,443 --> 00:41:20,877
A COMMON FUND PROGRAM LAUNCHED

1174
00:41:20,877 --> 00:41:24,581
BY THE NIH OFFICE OF DIRECTOR

1175
00:41:24,581 --> 00:41:35,125
TWO YEARS AGO, COMPLIMENT AIRY,

1176
00:41:36,460 --> 00:41:40,797
CO-CHAIRED BY RICK WOYCHIK AND

1177
00:41:40,797 --> 00:41:43,066
WORKED WITH THEM, WHAT WE WOULD

1178
00:41:43,066 --> 00:41:45,068
LIKE TO DRIVE IS TRANSLATIONAL

1179
00:41:45,068 --> 00:41:47,671
HUMAN MODELS.

1180
00:41:47,671 --> 00:41:49,539
AND/OR UTILIZATION OF HUMAN DATA

1181
00:41:49,539 --> 00:41:52,042
IN EITHER IN CONCERT WITH OR IN

1182
00:41:52,042 --> 00:41:53,243
REPLACEMENT OF ANIMAL MODELS.

1183
00:41:53,243 --> 00:41:55,879
AND PART OF THIS IS RELATED TO

1184
00:41:55,879 --> 00:41:56,980
SOMETHING WE'VE TALKED ABOUT

1185
00:41:56,980 --> 00:41:58,715
OVER TIME WITH RESPECT TO I KNOW

1186
00:41:58,715 --> 00:42:01,151
WHEN I WAS IN CMRR DIRECTOR, WE

1187
00:42:01,151 --> 00:42:03,320
TALKED ABOUT IT, AND HERE AT

1188
00:42:03,320 --> 00:42:05,789
COUNCIL, ABILITY TO TRANSLATE

1189
00:42:05,789 --> 00:42:07,624
FINDINGS BETWEEN HUMAN AND --

1190
00:42:07,624 --> 00:42:09,125
BETWEEN ANIMAL AND HUMAN MODELS,

1191
00:42:09,125 --> 00:42:12,929
SO THIS IS ANOTHER WAY TO DRIVE

1192
00:42:12,929 --> 00:42:14,164
INNOVATION INTO HUMAN MODELS,

1193
00:42:14,164 --> 00:42:15,665
YOU KNOW, ORGANOIDS WE'VE TALKED

1194
00:42:15,665 --> 00:42:17,200
ABOUT HERE, MULTIPLE INITIATIVES

1195
00:42:17,200 --> 00:42:17,434
ON.

1196
00:42:17,434 --> 00:42:18,401
SO THIS IS REALLY SORT OF FROM

1197
00:42:18,401 --> 00:42:21,705
THE OFFICE OF THE DIRECTOR A WAY

1198
00:42:21,705 --> 00:42:23,006
TO SPUR SOME INITIATIVE, AND

1199
00:42:23,006 --> 00:42:28,912
MAKE IT A BIGGER FOCUS OF OUR

1200
00:42:28,912 --> 00:42:29,279
PORTFOLIOS.

1201
00:42:29,279 --> 00:42:30,347
>> NEW INITIATIVES, ARE
THEY

1202
00:42:30,347 --> 00:42:32,282
COMING OUT SOON ON THIS PROGRAM?

1203
00:42:32,282 --> 00:42:33,750
>>  I DON'T KNOW, TO BE
QUITE

1204
00:42:33,750 --> 00:42:33,984
HONEST.

1205
00:42:33,984 --> 00:42:36,052
I CAN FOLLOW UP AND FIND OUT.

1206
00:42:36,052 --> 00:42:42,058
>> THANK YOU VERY MUCH.

1207
00:42:42,058 --> 00:42:42,192
 

1208
00:42:42,192 --> 00:42:43,393
 

1209
00:42:43,393 --> 00:42:44,127
>> DR. MALDONADO.

1210
00:42:44,127 --> 00:42:47,998
>> THANK YOU FOR THE
SUMMARY.

1211
00:42:47,998 --> 00:42:49,733
I WONDER GIVEN THE FACT THAT YOU

1212
00:42:49,733 --> 00:42:51,801
WENT OVER THE STRATEGIC PLAN AND

1213
00:42:51,801 --> 00:42:56,072
THAT YOU SAID IT'S FUNDAMENTALLY

1214
00:42:56,072 --> 00:42:57,841
NOT VERY DIFFERENT, LOOKING AT

1215
00:42:57,841 --> 00:42:59,276
POTENTIAL REDUCTIONS OF THIS

1216
00:42:59,276 --> 00:43:02,412
DEGREE AND AGAIN CONCERN ABOUT

1217
00:43:02,412 --> 00:43:05,715
NEW INVESTIGATORS.

1218
00:43:05,715 --> 00:43:07,918
WILL THERE BE FURTHER GUIDANCE

1219
00:43:07,918 --> 00:43:11,755
OR RESTRICTION ON SUBTOPICS OR

1220
00:43:11,755 --> 00:43:15,458
THEMES THAT WILL BE BROUGHT UP

1221
00:43:15,458 --> 00:43:16,459
FOR CONSIDERATION FOR FUNDING?

1222
00:43:16,459 --> 00:43:20,163
ARE WE GOING TO CONTINUE TO HAVE

1223
00:43:20,163 --> 00:43:21,798
STUDY SECTION RECOMMENDATIONS AS

1224
00:43:21,798 --> 00:43:24,100
THEY EXIST NOW OR WILL THERE BE

1225
00:43:24,100 --> 00:43:26,736
THEMES NOT ALLOWED TO BE

1226
00:43:26,736 --> 00:43:29,072
ADDRESSED WITHIN THE INSTITUTE

1227
00:43:29,072 --> 00:43:32,008
OR MAYBE IF YOU EVEN KNOW WITHIN

1228
00:43:32,008 --> 00:43:34,244
CSR AT A WHOLE?

1229
00:43:34,244 --> 00:43:37,414
>>  IT'S A GOOD QUESTION.

1230
00:43:37,414 --> 00:43:39,482
WHAT I CAN TELL YOU IS THIS.

1231
00:43:39,482 --> 00:43:41,418
WE'VE NOT BEEN ASKED TO CHANGE

1232
00:43:41,418 --> 00:43:43,086
SCIENTIFIC PORTION OF OUR

1233
00:43:43,086 --> 00:43:44,054
STRATEGIC PLAN.

1234
00:43:44,054 --> 00:43:46,089
AND IN SPEAKING WITH DR.

1235
00:43:46,089 --> 00:43:47,223
BHATTACHARYA AND DR. MEMOLI THEY

1236
00:43:47,223 --> 00:43:48,758
HAVE NOT RAISED TO ME CONCERNS

1237
00:43:48,758 --> 00:43:51,261
ABOUT THE AREAS OUTLINED IN OUR

1238
00:43:51,261 --> 00:43:52,796
STRATEGIC PLAN AT THIS POINT.

1239
00:43:52,796 --> 00:43:54,664
WITH RESPECT TO CSR AND REFERRAL

1240
00:43:54,664 --> 00:43:55,665
GUIDANCE, I DO NOT KNOW THE

1241
00:43:55,665 --> 00:43:57,734
ANSWER TO THAT AND WOULD HAVE TO

1242
00:43:57,734 --> 00:44:01,004
ASK DR. BURNS AND DR. REID ABOUT

1243
00:44:01,004 --> 00:44:01,404
THAT SPECIFICALLY.

1244
00:44:01,404 --> 00:44:03,173
RIGHT NOW I DO NOT KNOW OF

1245
00:44:03,173 --> 00:44:08,445
ANYTHING --  IF YOU'RE AWARE OFA

1246
00:44:08,445 --> 00:44:09,546
PROGRAM TERMINATION IT'S NOT

1247
00:44:09,546 --> 00:44:11,181
BEING SOLICITED AT PRESENT.

1248
00:44:11,181 --> 00:44:12,415
WE'RE REVIEWING SOME NOTICES OF

1249
00:44:12,415 --> 00:44:14,150
FUNDING OPPORTUNITY AND SO SOME

1250
00:44:14,150 --> 00:44:16,119
OF THOSE WILL BE REISSUED BUT

1251
00:44:16,119 --> 00:44:18,421
THEY MAY BE MODIFIED IN SOME

1252
00:44:18,421 --> 00:44:19,289
WAY.

1253
00:44:19,289 --> 00:44:21,024
BUT RIGHT NOW FOR NICHD WE HAVE

1254
00:44:21,024 --> 00:44:23,593
BEEN WORKING THROUGH OUR NOTICES

1255
00:44:23,593 --> 00:44:25,328
OF FUNDING OPPORTUNITY WITH THE

1256
00:44:25,328 --> 00:44:27,530
OFFICE OF EXTRAMURAL RESEARCH

1257
00:44:27,530 --> 00:44:29,499
WITH DR. LORSCH, AND HIS STAFF,

1258
00:44:29,499 --> 00:44:31,434
AS WELL AS OUR INTERNAL STAFF TO

1259
00:44:31,434 --> 00:44:34,104
MAKE SURE THAT THEY ARE IN LINE

1260
00:44:34,104 --> 00:44:35,305
WITH THE AGENCY PRIORITIES AS

1261
00:44:35,305 --> 00:44:38,375
STATED AND THAT WE CAN ACCEPT

1262
00:44:38,375 --> 00:44:39,776
THE RESEARCH.

1263
00:44:39,776 --> 00:44:42,445
AND SO I THINK FOR RIGHT NOW WE

1264
00:44:42,445 --> 00:44:45,482
HAVE NOT TRIED TO RESCOPE

1265
00:44:45,482 --> 00:44:46,483
BECAUSE IT'S UNCLEAR WHAT

1266
00:44:46,483 --> 00:44:48,585
CHANGES MIGHT BE NEEDED BUT WE

1267
00:44:48,585 --> 00:44:49,452
HAVEN'T BEEN GIVEN SPECIFIC

1268
00:44:49,452 --> 00:44:52,288
CHANGES RELATE IT'S TO OUR

1269
00:44:52,288 --> 00:45:02,565
STRATEGIC PLAN. 

1270
00:45:03,967 --> 00:45:04,134
CYNTHIA?

1271
00:45:04,134 --> 00:45:06,536
>>  THANK YOU FOR THE
REALLY

1272
00:45:06,536 --> 00:45:08,505
THOROUGH AND COMPREHENSIVE

1273
00:45:08,505 --> 00:45:08,838
PRESENTATION.

1274
00:45:08,838 --> 00:45:09,706
WE APPRECIATE IT.

1275
00:45:09,706 --> 00:45:11,675
I RECALL THAT YOU CALLED OUT

1276
00:45:11,675 --> 00:45:16,212
AUTISM AS AN AREA THAT WILL BE,

1277
00:45:16,212 --> 00:45:17,781
YOU KNOW, UNDER INVESTIGATION IN

1278
00:45:17,781 --> 00:45:18,548
SOLICITING APPLICATIONS.

1279
00:45:18,548 --> 00:45:20,850
ARE THERE ANY OTHER AREAS YOU

1280
00:45:20,850 --> 00:45:23,620
THINK WILL BE HIGHLIGHTED WITHIN

1281
00:45:23,620 --> 00:45:24,721
THE SCOPE OF NICHD?

1282
00:45:24,721 --> 00:45:32,962
>>  SO, I BELIEVE WITH THE
MAHA

1283
00:45:32,962 --> 00:45:33,496
COMMISSION REPORT CHRONIC

1284
00:45:33,496 --> 00:45:34,698
CHILDHOOD DISEASE WILL BE AT

1285
00:45:34,698 --> 00:45:35,031
ISSUE.

1286
00:45:35,031 --> 00:45:38,635
I'VE TALKED TO DR. BHATTACHARYA

1287
00:45:38,635 --> 00:45:39,669
ABOUT DEVELOPMENTAL ORIGINS,

1288
00:45:39,669 --> 00:45:42,338
SOME WAYS -- FOR EXAMPLE I KNOW

1289
00:45:42,338 --> 00:45:44,774
PRE-TERM BIRTH IS OP OF MIND FOR

1290
00:45:44,774 --> 00:45:44,941
YOU.

1291
00:45:44,941 --> 00:45:46,643
AND WE HAVE BROUGHT THAT UP

1292
00:45:46,643 --> 00:45:48,478
RELATED TO THE AUTISM INITIATIVE

1293
00:45:48,478 --> 00:45:50,480
THAT ONE OF THE MAJOR RISK

1294
00:45:50,480 --> 00:45:53,450
FACTORS FOR AUTISM IS RELATED TO

1295
00:45:53,450 --> 00:45:54,984
PRE-TERM BIRTH AND PARENTAL AGE.

1296
00:45:54,984 --> 00:45:57,554
AND SO I THINK FROM OUR

1297
00:45:57,554 --> 00:45:58,822
PERSPECTIVE THERE ARE A LOT OF

1298
00:45:58,822 --> 00:46:01,224
THINGS THAT ALIGN FROM NICHD'S

1299
00:46:01,224 --> 00:46:03,526
RESEARCH PORTFOLIO, ON THE MAKE

1300
00:46:03,526 --> 00:46:04,627
AMERICA HEALTHY AGAIN COMMISSION

1301
00:46:04,627 --> 00:46:05,095
REPORT.

1302
00:46:05,095 --> 00:46:06,696
THERE ARE PLACES WHERE WE THINK

1303
00:46:06,696 --> 00:46:08,465
OUR SCIENCE CAN BE A MAJOR

1304
00:46:08,465 --> 00:46:11,000
CONTRIBUTOR, IF THERE ARE

1305
00:46:11,000 --> 00:46:15,605
FUNDING OPPORTUNITIES THAT ARE

1306
00:46:15,605 --> 00:46:18,341
AVAILABLE WE WILL CONTINUE TO

1307
00:46:18,341 --> 00:46:19,242
MONITOR AND MAKE SURE NICHD'S

1308
00:46:19,242 --> 00:46:25,281
PRIORITIES ARE INCLUDED.

1309
00:46:25,281 --> 00:46:28,651
>> WE'RE RIGHT AT TIME.

1310
00:46:28,651 --> 00:46:34,023
>> LAST QUESTION TO YOU,
DR.

1311
00:46:34,023 --> 00:46:34,591
AIZER.

1312
00:46:34,591 --> 00:46:36,860
>> RELATED TO THE LAST
POINT

1313
00:46:36,860 --> 00:46:40,396
MADE IN LOOKING AT THE MAHA

1314
00:46:40,396 --> 00:46:42,565
REPORT AND AGENDA IT DOES SEEM,

1315
00:46:42,565 --> 00:46:43,867
YOU KNOW, MATERNAL AND CHILD

1316
00:46:43,867 --> 00:46:46,169
HEALTH SEEMS TO BE KEY TO THAT

1317
00:46:46,169 --> 00:46:49,572
BUT IF I DID MY CALCULATIONS

1318
00:46:49,572 --> 00:46:52,776
CORRECTLY, THE TOTAL REDUCTION

1319
00:46:52,776 --> 00:46:55,979
IN FUNDS TO THE NEW COMBINED

1320
00:46:55,979 --> 00:46:59,582
NICHD IS PRETTY MUCH 40%.

1321
00:46:59,582 --> 00:47:03,553
SO THAT DOESN'T SEEM TO REALLY

1322
00:47:03,553 --> 00:47:08,625
ALIGN WITH THE PRIORITIES OF THE

1323
00:47:08,625 --> 00:47:10,126
MAHA AGENDA, WANT TO KNOW IF YOU

1324
00:47:10,126 --> 00:47:11,995
HAVE ANY COMMENTS ON THAT.

1325
00:47:11,995 --> 00:47:12,529
>> RIGHT.

1326
00:47:12,529 --> 00:47:14,063
THE BUDGET DOCUMENT IS A

1327
00:47:14,063 --> 00:47:14,330
PROPOSAL.

1328
00:47:14,330 --> 00:47:16,132
WE WON'T KNOW WHAT THE BUDGE SET

1329
00:47:16,132 --> 00:47:17,467
UNTIL THAT GOES THROUGH

1330
00:47:17,467 --> 00:47:18,768
CONGRESSIONAL APPROVALS BUT I

1331
00:47:18,768 --> 00:47:21,070
WILL SAY I THINK YOU ARE CORRECT

1332
00:47:21,070 --> 00:47:22,172
THAT THE SCIENCE DOES ALIGN

1333
00:47:22,172 --> 00:47:24,774
CLOSELY AND WE WILL CONTINUE TO

1334
00:47:24,774 --> 00:47:26,543
WHERE THERE ARE FUNDS AVAILABLE

1335
00:47:26,543 --> 00:47:28,511
TO ANSWER THE SCIENCE, CONTINUE

1336
00:47:28,511 --> 00:47:31,014
TO MAKE SURE THAT OUR PRIORITIES

1337
00:47:31,014 --> 00:47:32,682
ARE REPRESENTED AND WE DID THAT

1338
00:47:32,682 --> 00:47:33,883
SPECIFIC TO THE AUTISM

1339
00:47:33,883 --> 00:47:35,518
INITIATIVE AND MADE SURE THE

1340
00:47:35,518 --> 00:47:37,954
SCIENCE THAT WE KNEW WAS

1341
00:47:37,954 --> 00:47:40,557
INCLUDED IN THAT, AS WELL AS

1342
00:47:40,557 --> 00:47:43,293
DATA THAT WE HAD AVAILABLE TO

1343
00:47:43,293 --> 00:47:44,194
ADDRESS THOSE QUESTIONS, AND I

1344
00:47:44,194 --> 00:47:45,595
THINK WE'LL CONTINUE TO DO THE

1345
00:47:45,595 --> 00:47:47,997
SAME TO MAKE SURE THAT WE HAVE,

1346
00:47:47,997 --> 00:47:49,632
YOU KNOW, THE HISTORY THAT WE

1347
00:47:49,632 --> 00:47:51,601
HAVE HERE AT NICHD HAS BEEN A

1348
00:47:51,601 --> 00:47:53,269
FOCUS IN THESE AREAS AND WE WILL

1349
00:47:53,269 --> 00:47:57,740
CONTINUE TO TRY TO ADVANCE THOSE

1350
00:47:57,740 --> 00:47:59,375
PRIORITIES.

1351
00:47:59,375 --> 00:48:01,611
ALL RIGHT.

1352
00:48:01,611 --> 00:48:04,647
WITH THAT I WILL SIT BACK DOWN.

1353
00:48:04,647 --> 00:48:06,516
>> THANK YOU VERY MUCH.

1354
00:48:06,516 --> 00:48:11,554
I SEE THAT DR. SEAN MOONEY IS ON

1355
00:48:11,554 --> 00:48:11,988
LINE.

1356
00:48:11,988 --> 00:48:15,158
AND IT'S A PLEASURE TO INTRODUCE

1357
00:48:15,158 --> 00:48:15,491
HIM.

1358
00:48:15,491 --> 00:48:17,794
DR. MOONEY IS THE DIRECTOR OF

1359
00:48:17,794 --> 00:48:21,831
THE NIH CENTER FOR INFORMATION

1360
00:48:21,831 --> 00:48:23,166
TECHNOLOGY, WHERE HE OVERSEES

1361
00:48:23,166 --> 00:48:24,367
NIH INFORMATION TECHNOLOGY

1362
00:48:24,367 --> 00:48:26,336
SERVICES AND TOOLS.

1363
00:48:26,336 --> 00:48:29,606
RANGING FROM COLLABORATION

1364
00:48:29,606 --> 00:48:32,141
TECHNOLOGY AND APPLICATIONS FOR

1365
00:48:32,141 --> 00:48:33,476
ADMINISTRATORS TO NETWORKS

1366
00:48:33,476 --> 00:48:37,013
HOSTING AND TECHNOLOGY TRAINING.

1367
00:48:37,013 --> 00:48:38,715
BEFORE JOINING CIT DR. MOONEY

1368
00:48:38,715 --> 00:48:40,783
WAS PROFESSOR OF BIOMEDICAL

1369
00:48:40,783 --> 00:48:42,218
INFORMATICS AND MEDICAL

1370
00:48:42,218 --> 00:48:44,854
EDUCATION AS WELL AS CHIEF

1371
00:48:44,854 --> 00:48:46,422
RESEARCH INFORMATION OFFICER AT

1372
00:48:46,422 --> 00:48:47,123
UNIVERSITY OF WASHINGTON SCHOOL

1373
00:48:47,123 --> 00:48:49,425
OF MEDICINE.

1374
00:48:49,425 --> 00:48:51,060
HE WAS ALSO ASSOCIATE DIRECTOR

1375
00:48:51,060 --> 00:48:53,496
OF THE NATIONAL ALZHEIMER'S

1376
00:48:53,496 --> 00:48:54,631
COORDINATING CENTER, AND

1377
00:48:54,631 --> 00:48:55,999
DIRECTOR OF INFORMATICS,

1378
00:48:55,999 --> 00:48:57,100
UNIVERSITY OF WASHINGTON

1379
00:48:57,100 --> 00:48:59,068
INSTITUTE OF TRANSLATIONAL

1380
00:48:59,068 --> 00:49:01,738
HEALTH SCIENCES.

1381
00:49:01,738 --> 00:49:03,006
DR. MOONEY GRADUATED FROM

1382
00:49:03,006 --> 00:49:03,773
UNIVERSITY OF WISCONSIN-MADISON,

1383
00:49:03,773 --> 00:49:09,279
EARNED A Ph.D. IN

1384
00:49:09,279 --> 00:49:09,812
PHARMACEUTICAL CHEMISTRY,

1385
00:49:09,812 --> 00:49:11,614
UNIVERSITY OF CALIFORNIA, SAN

1386
00:49:11,614 --> 00:49:12,415
FRANCISCO, FELLOW OF THE

1387
00:49:12,415 --> 00:49:14,617
AMERICAN COLLEGE OF MEDICAL

1388
00:49:14,617 --> 00:49:16,419
INFORMATICS, IT'S A PLEASURE TO

1389
00:49:16,419 --> 00:49:17,253
INTRODUCE HIM.

1390
00:49:17,253 --> 00:49:18,154
WELCOME, DR. MOONEY.

1391
00:49:18,154 --> 00:49:18,421
>> HI.

1392
00:49:18,421 --> 00:49:20,757
CAN YOU HEAR ME OKAY?

1393
00:49:20,757 --> 00:49:22,325
>>  WE CAN.

1394
00:49:22,325 --> 00:49:23,526
THANK YOU, SEAN.

1395
00:49:23,526 --> 00:49:24,294
>> WONDERFUL.

1396
00:49:24,294 --> 00:49:28,197
I'M GOING TO SHARE MY SCREEN.

1397
00:49:28,197 --> 00:49:29,966
SECOND QUESTION, CAN YOU SEE MY

1398
00:49:29,966 --> 00:49:33,036
SCREEN OKAY?

1399
00:49:33,036 --> 00:49:34,404
>> WE CAN.

1400
00:49:34,404 --> 00:49:36,973
I WANT TO MAKE SURE, IS OUR TEAM

1401
00:49:36,973 --> 00:49:37,507
GOOD?

1402
00:49:37,507 --> 00:49:37,941
OKAY.

1403
00:49:37,941 --> 00:49:39,475
YES, WE'RE GOOD, SEAN.

1404
00:49:39,475 --> 00:49:40,476
GO AHEAD.

1405
00:49:40,476 --> 00:49:40,910
>> EXCELLENT.

1406
00:49:40,910 --> 00:49:42,578
SO FIRST OF ALL, IT'S A HUGE

1407
00:49:42,578 --> 00:49:45,415
HONOR TO BE PRESENTING TO YOU

1408
00:49:45,415 --> 00:49:45,615
TODAY.

1409
00:49:45,615 --> 00:49:46,849
I'M VERY PLEASED TO GET THE

1410
00:49:46,849 --> 00:49:48,718
INVITE AND HAPPY TO BE HERE.

1411
00:49:48,718 --> 00:49:52,755
I'M SORRY THAT I'M DOING THIS

1412
00:49:52,755 --> 00:49:53,856
VIRTUALLY.

1413
00:49:53,856 --> 00:49:56,392
WORK TRAVEL CAME UP THAT WAS

1414
00:49:56,392 --> 00:49:57,927
SHIFTED BY A WEEK-AND-A-HALF

1415
00:49:57,927 --> 00:49:58,995
FORWARD INTO JUNE AND

1416
00:49:58,995 --> 00:49:59,762
UNFORTUNATELY OVERLAPPED.

1417
00:49:59,762 --> 00:50:02,498
I WAS PLANNING ON GIVING THIS IN

1418
00:50:02,498 --> 00:50:02,732
PERSON.

1419
00:50:02,732 --> 00:50:05,134
SO I'M SORRY I'M NOT THERE IN

1420
00:50:05,134 --> 00:50:05,435
PERSON.

1421
00:50:05,435 --> 00:50:07,003
I'M REALLY, REALLY HAPPY TO BE

1422
00:50:07,003 --> 00:50:07,537
PRESENTING TODAY.

1423
00:50:07,537 --> 00:50:10,373
I'VE BEEN AT THE NIH NOW FOR

1424
00:50:10,373 --> 00:50:11,674
ABOUT 15 MONTHS.

1425
00:50:11,674 --> 00:50:14,310
AND IT HAS BEEN -- I CAME FROM

1426
00:50:14,310 --> 00:50:16,846
THE ACADEMIC WORLD AS YOU HEARD,

1427
00:50:16,846 --> 00:50:20,316
AND IT'S BEEN A HUGE WHIRLWIND

1428
00:50:20,316 --> 00:50:23,086
TO ABSORB ALL OF THE AMAZING

1429
00:50:23,086 --> 00:50:24,654
WORK THAT'S BEEN GOING ON

1430
00:50:24,654 --> 00:50:26,389
NIH-WIDE AND ONE OF THOSE THINGS

1431
00:50:26,389 --> 00:50:29,859
THAT I'VE LEARNED IS PART OF

1432
00:50:29,859 --> 00:50:31,627
THAT PROCESS, IS THAT NICHD HAS

1433
00:50:31,627 --> 00:50:35,999
BEEN A LEADER IN DATA, DATA

1434
00:50:35,999 --> 00:50:37,133
SHARING, BUILDING THE

1435
00:50:37,133 --> 00:50:39,602
INFRASTRUCTURE THAT'S GOING TO

1436
00:50:39,602 --> 00:50:40,603
SUPPORT THE DATA, YOU KNOW,

1437
00:50:40,603 --> 00:50:41,938
TECHNOLOGIES IN THE FUTURE TO

1438
00:50:41,938 --> 00:50:43,473
ENABLE THE SCIENCE THAT WE WANT

1439
00:50:43,473 --> 00:50:45,008
TO DO.

1440
00:50:45,008 --> 00:50:46,642
DATA SCIENCE IS REALLY KEY AS

1441
00:50:46,642 --> 00:50:48,611
YOU ALL KNOW, IN EVERYTHING WE

1442
00:50:48,611 --> 00:50:48,778
DO.

1443
00:50:48,778 --> 00:50:51,547
AND IN MY ROLE SERVING

1444
00:50:51,547 --> 00:50:52,548
TECHNOLOGY AT THE NIH, I'M

1445
00:50:52,548 --> 00:50:54,851
REALLY TRYING TO PUT TOGETHER

1446
00:50:54,851 --> 00:50:57,487
THE PIECES THAT WILL HELP

1447
00:50:57,487 --> 00:50:58,388
SUPPORT THE FUTURE OF RESEARCH

1448
00:50:58,388 --> 00:51:01,090
FOR ALL OF THE INSTITUTES, SO

1449
00:51:01,090 --> 00:51:05,561
THAT WE CAN BUILD DATA RESOURCES

1450
00:51:05,561 --> 00:51:06,662
THAT ARE EFFICIENT,

1451
00:51:06,662 --> 00:51:08,297
INTEROPEARABLE, THAT USE

1452
00:51:08,297 --> 00:51:09,065
TECHNOLOGY STANDARDS THAT ARE

1453
00:51:09,065 --> 00:51:12,135
OFF THE SHELF, YOU KNOW,

1454
00:51:12,135 --> 00:51:12,802
HOPEFULLY OPEN, AND SUPPORT ALL

1455
00:51:12,802 --> 00:51:15,304
OF THE THINGS THAT WE WANT TO DO

1456
00:51:15,304 --> 00:51:17,407
BOTH IN THE INTRAMURAL WORLD BUT

1457
00:51:17,407 --> 00:51:19,142
ALSO THE EXTRAMURAL WORLD.

1458
00:51:19,142 --> 00:51:21,778
AND SO WE'RE WORKING AND HAVE

1459
00:51:21,778 --> 00:51:24,480
PARTNERED WITH A NUMBER OF

1460
00:51:24,480 --> 00:51:25,815
INDIVIDUALS AND UNITS ACROSS THE

1461
00:51:25,815 --> 00:51:26,883
NIH TO MAKE THIS HAPPEN.

1462
00:51:26,883 --> 00:51:30,620
I WANT TO SHOUT OUT REBEKAH

1463
00:51:30,620 --> 00:51:31,687
ROSEN AND VALERIE COTTON, VERY

1464
00:51:31,687 --> 00:51:34,590
CLOSE PARTNERS WITH THE WORK

1465
00:51:34,590 --> 00:51:36,726
WE'VE BEEN DOING AND THAT'S BEEN

1466
00:51:36,726 --> 00:51:38,194
JUST REALLY WONDERFUL IN TERMS

1467
00:51:38,194 --> 00:51:39,829
OF HOW WE HAVE BEEN BUILDING OUT

1468
00:51:39,829 --> 00:51:41,798
WHAT WE WANT TO DO.

1469
00:51:41,798 --> 00:51:43,633
AGAIN, AT 15 MONTHS HERE I STILL

1470
00:51:43,633 --> 00:51:45,301
FEEL LIKE I'M JUST GETTING

1471
00:51:45,301 --> 00:51:46,169
STARTED SO I'M GOING WALK

1472
00:51:46,169 --> 00:51:48,104
THROUGH AND TELL YOU ABOUT HOW

1473
00:51:48,104 --> 00:51:51,541
WE DO TECHNOLOGY AT THE NIH, HOW

1474
00:51:51,541 --> 00:51:52,842
WE ARE BUILDING AND REVISING

1475
00:51:52,842 --> 00:51:54,377
WHAT WE DO.

1476
00:51:54,377 --> 00:51:56,879
I'LL TALK ABOUT SOME OF THE

1477
00:51:56,879 --> 00:51:57,780
SUCCESSES OF INFORMATION

1478
00:51:57,780 --> 00:52:00,183
TECHNOLOGY, AND I'LL THEN TALK

1479
00:52:00,183 --> 00:52:02,485
ABOUT HOW WE'RE BUILDING

1480
00:52:02,485 --> 00:52:04,987
HOPEFULLY THE ECOSYSTEM OF CYBER

1481
00:52:04,987 --> 00:52:05,455
INFRASTRUCTURE.

1482
00:52:05,455 --> 00:52:07,523
THOSE ARE TECHNOLOGIES THAT

1483
00:52:07,523 --> 00:52:09,058
SERVE YOU AND SERVE SCIENTISTS

1484
00:52:09,058 --> 00:52:10,760
TO BE ABLE TO ENABLE SCIENTISTS

1485
00:52:10,760 --> 00:52:12,161
TO WHAT THEY DO.

1486
00:52:12,161 --> 00:52:16,933
I THINK ONE OF THE KEY ELEMENTS

1487
00:52:16,933 --> 00:52:18,768
HERE WE DON'T REALLY DEFINE THE

1488
00:52:18,768 --> 00:52:19,435
SCIENCE.

1489
00:52:19,435 --> 00:52:19,869
I'M A SCIENTIST.

1490
00:52:19,869 --> 00:52:23,606
I HAVE A LAB AT NHGRI, I STILL

1491
00:52:23,606 --> 00:52:24,073
DO SCIENCE.

1492
00:52:24,073 --> 00:52:27,777
BUT WE TRY HARD TO SERVE AND TO

1493
00:52:27,777 --> 00:52:29,412
REALLY HELP THE SCIENCE DEFINE

1494
00:52:29,412 --> 00:52:31,080
WHAT THE TECHNOLOGIES ARE NEEDED

1495
00:52:31,080 --> 00:52:33,683
TO BE PUT IN PLACE THAT COULD BE

1496
00:52:33,683 --> 00:52:35,785
MOST RESPONSIVE TO WHAT WE DO.

1497
00:52:35,785 --> 00:52:37,320
I'M GOING TO START WITH

1498
00:52:37,320 --> 00:52:39,856
COMPUTING AT THE NIH, HOW WE DO

1499
00:52:39,856 --> 00:52:40,623
IT.

1500
00:52:40,623 --> 00:52:42,125
I'LL TALK ABOUT SOME OPERATIONAL

1501
00:52:42,125 --> 00:52:44,327
SUCCESS STORIES TO GIVE AN IDEA

1502
00:52:44,327 --> 00:52:46,295
OF THE SCOPE, SCALE AND SUCCESS

1503
00:52:46,295 --> 00:52:47,597
OF WHAT WE'VE DONE.

1504
00:52:47,597 --> 00:52:49,899
I'LL TALK ABOUT THE CLOUD.

1505
00:52:49,899 --> 00:52:51,634
I'LL TALK ABOUT OPERATIONAL A.I.

1506
00:52:51,634 --> 00:52:59,242
AND USE OF A.I. IN BIOMEDICINE

1507
00:52:59,242 --> 00:53:00,743
AT NIH AND TALK ABOUT BIOMEDICAL

1508
00:53:00,743 --> 00:53:01,711
CYBER INFRASTRUCTURE.

1509
00:53:01,711 --> 00:53:04,080
I ONLY HAVE 30 MINUTES SO I'LL

1510
00:53:04,080 --> 00:53:06,048
GO QUICKLY THROUGH THE MATERIALS

1511
00:53:06,048 --> 00:53:07,483
THAT I HAVE TO PRESENT.

1512
00:53:07,483 --> 00:53:10,453
WE START WHEN WE THINK ABOUT

1513
00:53:10,453 --> 00:53:12,955
TECHNOLOGY AT THE NIH, I THINK

1514
00:53:12,955 --> 00:53:14,724
FIRST ABOUT PEOPLE.

1515
00:53:14,724 --> 00:53:20,296
THE NIH HAS MORE THAN 6,000

1516
00:53:20,296 --> 00:53:23,332
INDIVIDUALS WHO SPEND FULL-TIME

1517
00:53:23,332 --> 00:53:25,001
WORK DOING TECHNOLOGY OR I.T.,

1518
00:53:25,001 --> 00:53:27,069
I.T.-RELATED WORK AT THE NIH.

1519
00:53:27,069 --> 00:53:30,940
AND ALL OF THEM CONTRIBUTE IN

1520
00:53:30,940 --> 00:53:32,108
VARIOUS AREAS FROM SUPPORTING,

1521
00:53:32,108 --> 00:53:34,110
FOR EXAMPLE, TEAMS MEETING ALL

1522
00:53:34,110 --> 00:53:37,380
THE WAY TO SUPPORTING OUR

1523
00:53:37,380 --> 00:53:38,247
NETWORK, HIGH PERFORMANCE

1524
00:53:38,247 --> 00:53:38,881
CLOUDING, CLOUD INFRASTRUCTURE,

1525
00:53:38,881 --> 00:53:39,148
ET CETERA.

1526
00:53:39,148 --> 00:53:42,151
ONE OF THE REASONS THE NIH HAS

1527
00:53:42,151 --> 00:53:44,187
BEEN SO SUCCESSFUL AT THE

1528
00:53:44,187 --> 00:53:46,155
TECHNOLOGIES THAT WE'VE BUILT IS

1529
00:53:46,155 --> 00:53:48,558
BECAUSE OF THOSE PEOPLE AND THE

1530
00:53:48,558 --> 00:53:50,293
FACT THAT EVERYBODY IS DRIVEN BY

1531
00:53:50,293 --> 00:53:53,029
THE NIH'S MISSION TO DO WHAT WE

1532
00:53:53,029 --> 00:53:53,596
DO.

1533
00:53:53,596 --> 00:53:54,697
WE'VE BUILT INFRASTRUCTURE AND

1534
00:53:54,697 --> 00:53:55,998
CYBERSECURITY UPON THAT.

1535
00:53:55,998 --> 00:53:59,602
I'LL TALK ABOUT THAT HERE IN A

1536
00:53:59,602 --> 00:53:59,936
SECOND.

1537
00:53:59,936 --> 00:54:00,469
ENTERPRISE INFRASTRUCTURE

1538
00:54:00,469 --> 00:54:01,137
SUPPORTS EVERYBODY.

1539
00:54:01,137 --> 00:54:02,471
IT'S THE BIG THINGS.

1540
00:54:02,471 --> 00:54:05,541
IT MIGHT BE TO A SCIENTIST THE

1541
00:54:05,541 --> 00:54:07,210
BORING THINGS LIKE OUR NETWORK,

1542
00:54:07,210 --> 00:54:11,447
ACCESS TO E-MAIL, OUR USE OF,

1543
00:54:11,447 --> 00:54:13,015
FOR EXAMPLE, TEAMS AND LICENSES

1544
00:54:13,015 --> 00:54:15,618
FOR SOFTWARE THAT WE HAVE.

1545
00:54:15,618 --> 00:54:17,353
AND OUR DATA CENTER

1546
00:54:17,353 --> 00:54:18,688
INFRASTRUCTURE, THINGS LIKE

1547
00:54:18,688 --> 00:54:18,888
THAT.

1548
00:54:18,888 --> 00:54:20,656
AND THEN ABOVE THAT THE FEDERAL

1549
00:54:20,656 --> 00:54:21,891
GOVERNMENT HAS BEEN INVESTING

1550
00:54:21,891 --> 00:54:23,626
HEAVILY IN THE CLOUD AND HOW DO

1551
00:54:23,626 --> 00:54:27,763
WE BUILD, YOU KNOW, THIS

1552
00:54:27,763 --> 00:54:32,468
TRADITIONAL FIRST HARDWARE INTO

1553
00:54:32,468 --> 00:54:33,803
THE CLOUD AND THINKING ABOUT

1554
00:54:33,803 --> 00:54:35,037
WHAT BENEFIT THE CLOUD CAN

1555
00:54:35,037 --> 00:54:37,340
PROVIDE LIKE AS A SERVICE, ET

1556
00:54:37,340 --> 00:54:37,707
CETERA.

1557
00:54:37,707 --> 00:54:40,610
THAT MAKES ME THINK ABOUT CYBER

1558
00:54:40,610 --> 00:54:42,144
INFRASTRUCTURE, WHAT ARE THOSE

1559
00:54:42,144 --> 00:54:44,981
MODULAR TOOLS THAT CAN BE USED

1560
00:54:44,981 --> 00:54:48,150
TO CONTRIBUTE TO THE DIGITAL

1561
00:54:48,150 --> 00:54:49,485
ECOSYSTEM THAT SCIENTISTS ARE

1562
00:54:49,485 --> 00:54:51,020
DEFINING TO SUPPORT THE NIH.

1563
00:54:51,020 --> 00:54:53,856
ABOVE THAT WE HAVE DATA, DATA

1564
00:54:53,856 --> 00:54:56,392
PLATFORMS, ANALYTICS, AND A.I.

1565
00:54:56,392 --> 00:54:58,027
BOTH IN THE SCIENTIFIC WORKED

1566
00:54:58,027 --> 00:54:59,328
BUT ALSO ADMINISTRATIVE ONE IN

1567
00:54:59,328 --> 00:55:00,896
TERMS OF PERFORMING AND ENABLING

1568
00:55:00,896 --> 00:55:04,200
THE WORK THE NIH DOES.

1569
00:55:04,200 --> 00:55:11,507
TO TELL  YOU ABOUT ENTERPRISE

1570
00:55:11,507 --> 00:55:13,109
I.T. AT THE NIH, I WAS ASKED BY

1571
00:55:13,109 --> 00:55:15,444
THE DIRECTOR OF THE NIH TO SERVE

1572
00:55:15,444 --> 00:55:19,615
AS ASSOCIATE DIRECTOR FOR I.T.

1573
00:55:19,615 --> 00:55:20,483
CYBER INFRASTRUCTURE AND

1574
00:55:20,483 --> 00:55:22,885
CYBERSECURITY ABOUT A YEAR AGO.

1575
00:55:22,885 --> 00:55:24,754
WITHIN THAT ROLE, I OVERSEE THE

1576
00:55:24,754 --> 00:55:27,056
OFFICE OF THE CHIEF INFORMATION

1577
00:55:27,056 --> 00:55:31,360
OFFICER. 

1578
00:55:31,360 --> 00:55:35,164
WE RECRUITED A CIO, ADELE

1579
00:55:35,164 --> 00:55:35,931
MERITT, OUTSTANDING IN GETTING

1580
00:55:35,931 --> 00:55:38,801
HER FEET ON THE GROUND, STARTED

1581
00:55:38,801 --> 00:55:40,336
IN SEPTEMBER, A RICH RESEARCH

1582
00:55:40,336 --> 00:55:41,203
AND FEDERAL BACKGROUND.

1583
00:55:41,203 --> 00:55:43,939
SHE HAS A LOT OF EXPERIENCE TO

1584
00:55:43,939 --> 00:55:46,809
REALLY MAKE OCIO SHINE.

1585
00:55:46,809 --> 00:55:49,412
OCIO FOCUSES ON I.T.

1586
00:55:49,412 --> 00:55:50,313
STRATEGICALLY, ENTERPRISE

1587
00:55:50,313 --> 00:55:52,181
ARCHITECTURE, I.T. GOVERNANCE,

1588
00:55:52,181 --> 00:55:53,949
INFORMATION SECURITY.

1589
00:55:53,949 --> 00:55:56,986
AND ALSO SUPPORTS THE OFFICE OF

1590
00:55:56,986 --> 00:56:00,923
THE CHIEF INFORMATION SECURITY

1591
00:56:00,923 --> 00:56:01,490
OFFICER.

1592
00:56:01,490 --> 00:56:02,191
OPERATIONALLY, I'M ALSO DIRECTOR

1593
00:56:02,191 --> 00:56:03,793
OF THE CENTER FOR INFORMATION

1594
00:56:03,793 --> 00:56:05,761
TECHNOLOGY, THAT'S ONE OF THE 27

1595
00:56:05,761 --> 00:56:08,531
INSTITUTES AND CENTERS OF THE

1596
00:56:08,531 --> 00:56:08,698
NIH.

1597
00:56:08,698 --> 00:56:10,166
WE PROVIDE ENTERPRISE I.T.

1598
00:56:10,166 --> 00:56:12,902
SERVICES BACK TO THE NIH.

1599
00:56:12,902 --> 00:56:15,604
REALLY WE'RE THE OPERATIONAL ARM

1600
00:56:15,604 --> 00:56:17,506
OF WHAT THE NIH DOES.

1601
00:56:17,506 --> 00:56:22,311
WE'RE IN TOTAL ABOUT, I DON'T

1602
00:56:22,311 --> 00:56:23,179
KNOW, 1200 OR MAYBE 1300 STAFF

1603
00:56:23,179 --> 00:56:27,516
THAT SUPPORT ALL OF THE KIND OF

1604
00:56:27,516 --> 00:56:28,284
ENTERPRISE TECHNOLOGIES THAT

1605
00:56:28,284 --> 00:56:29,819
SUPPORT WHAT WE DO.

1606
00:56:29,819 --> 00:56:34,857
SO, AGAIN, IT'S A BIG

1607
00:56:34,857 --> 00:56:36,392
ENTERPRISE, AND OCIO AND CIT

1608
00:56:36,392 --> 00:56:40,196
WORK TOGETHER TO PROVIDE BOTH

1609
00:56:40,196 --> 00:56:42,498
OUR STRATEGY AS WELL AS OUR

1610
00:56:42,498 --> 00:56:46,435
OPERATIONS FOR SUPPORTING WHAT

1611
00:56:46,435 --> 00:56:47,103
WE DO.

1612
00:56:47,103 --> 00:56:50,573
SO, ALL I.C.s HAVE TECHNOLOGY,

1613
00:56:50,573 --> 00:56:51,474
I.T., STRATEGIC STRATEGIES

1614
00:56:51,474 --> 00:56:54,310
AROUND DATA AND HAVE INVESTED

1615
00:56:54,310 --> 00:56:55,845
HEAVILY IN DATA AND DATA

1616
00:56:55,845 --> 00:56:57,046
SCIENCE.

1617
00:56:57,046 --> 00:57:00,316
WE HAVE A NUMBER OF PARTNERSHIPS

1618
00:57:00,316 --> 00:57:01,951
THAT ENABLE THE TECHNOLOGY SIDE

1619
00:57:01,951 --> 00:57:05,888
TO SUPPORT THE BUILDING OF THIS

1620
00:57:05,888 --> 00:57:07,256
SO-CALLED CYBER INFRASTRUCTURE

1621
00:57:07,256 --> 00:57:09,291
DIGITAL ECOSYSTEM AT THE NIH.

1622
00:57:09,291 --> 00:57:10,192
WE WORK WITH THE NATIONAL

1623
00:57:10,192 --> 00:57:13,462
LIBRARY OF MEDICINE, WE WORK

1624
00:57:13,462 --> 00:57:15,431
CLOSELY WITH THE OFFICE OF DATA

1625
00:57:15,431 --> 00:57:16,432
SCIENCE STRATEGY, SUSAN

1626
00:57:16,432 --> 00:57:18,401
GREGURICK'S OFFICE.

1627
00:57:18,401 --> 00:57:21,904
AND WE PARTNER WITH MANY OF THE

1628
00:57:21,904 --> 00:57:23,406
INSTITUTES SUCH AS NICHD IN

1629
00:57:23,406 --> 00:57:25,174
TERMS OF HELPING DRIVE US,

1630
00:57:25,174 --> 00:57:26,475
TELLING US WHAT THOSE

1631
00:57:26,475 --> 00:57:27,476
REQUIREMENTS ARE AND WHAT THE

1632
00:57:27,476 --> 00:57:29,011
TOOLS ARE THAT WE CAN PUT IN

1633
00:57:29,011 --> 00:57:31,514
PLACE TO HELP SUPPORT THEM.

1634
00:57:31,514 --> 00:57:33,716
SO LET ME TALK BRIEFLY ABOUT

1635
00:57:33,716 --> 00:57:35,518
SOME OF THE SUCCESS STORIES OF

1636
00:57:35,518 --> 00:57:37,319
THINGS WE'VE BUILT AT THE NIH.

1637
00:57:37,319 --> 00:57:39,855
SOME OF THESE MIGHT BE BORING TO

1638
00:57:39,855 --> 00:57:41,357
SCIENTISTS BUT I'M PROUD OF THE

1639
00:57:41,357 --> 00:57:42,992
WORK WE'VE DONE AND IT GOES TO

1640
00:57:42,992 --> 00:57:47,630
SHOW THE SIZE AND SCALE OF WHAT

1641
00:57:47,630 --> 00:57:51,133
WE DO HERE WITHIN THIS

1642
00:57:51,133 --> 00:57:51,467
ORGANIZATION.

1643
00:57:51,467 --> 00:57:55,171
THE NIH HAS 45,000 STAFF,

1644
00:57:55,171 --> 00:57:57,573
700,000 VISITORS, 200 NIH

1645
00:57:57,573 --> 00:58:01,510
BUILDINGS ACROSS NINE GEOGRAPHIC

1646
00:58:01,510 --> 00:58:01,844
LOCATIONS.

1647
00:58:01,844 --> 00:58:04,380
WE BUILD AND SUPPORT AN NIH

1648
00:58:04,380 --> 00:58:06,115
NETWORK FOR SECURE AND RELIABLE

1649
00:58:06,115 --> 00:58:08,617
INFORMATION SHARING ACROSS THAT,

1650
00:58:08,617 --> 00:58:11,921
SUPPORTING ALL THOSE STAFF AND

1651
00:58:11,921 --> 00:58:12,188
VISITORS.

1652
00:58:12,188 --> 00:58:15,591
IT'S MORE THAN 4,300 MILES OF

1653
00:58:15,591 --> 00:58:18,961
CONNECTED NETWORK CABLING FOR

1654
00:58:18,961 --> 00:58:20,496
HIGH-SPEED COMMUNICATIONS AND

1655
00:58:20,496 --> 00:58:22,898
DATA TRANSFER ACROSS NIH SITES.

1656
00:58:22,898 --> 00:58:24,867
WE ALSO SUPPORT NIH

1657
00:58:24,867 --> 00:58:27,603
COLLABORATION TOOLS LIKE ZOOM

1658
00:58:27,603 --> 00:58:28,838
AND TEAMS.

1659
00:58:28,838 --> 00:58:32,441
AND WE HAVE SUPPORTED MORE THAN

1660
00:58:32,441 --> 00:58:33,676
2.5 MILLION VIRTUAL MEETINGS

1661
00:58:33,676 --> 00:58:35,744
APPROXIMATELY PER YEAR, A

1662
00:58:35,744 --> 00:58:37,112
BILLIONE MAILS RECEIVED AND

1663
00:58:37,112 --> 00:58:41,817
SENT, MORE THAN A MILLION GIG A

1664
00:58:41,817 --> 00:58:45,754
POINTS IN SHARE POINT AND

1665
00:58:45,754 --> 00:58:46,188
ONEDRIVE.

1666
00:58:46,188 --> 00:58:47,490
WE SUPPORT BIOWULF, AVAILABLE

1667
00:58:47,490 --> 00:58:49,492
WITHIN THE INTRAMURAL PROGRAM.

1668
00:58:49,492 --> 00:58:52,228
IT'S IN THE B-12 DATA CENTER,

1669
00:58:52,228 --> 00:58:56,031
AND SEES MORE THAN A MILLION CPU

1670
00:58:56,031 --> 00:58:58,234
HOURS PER MONTH, SATURATED FROM

1671
00:58:58,234 --> 00:58:59,869
USE, BASICALLY RUNNING ALL THE

1672
00:58:59,869 --> 00:59:01,704
TIME AND HAS NO OPEN

1673
00:59:01,704 --> 00:59:04,907
AVAILABILITY, AND HAS BEEN VERY

1674
00:59:04,907 --> 00:59:05,241
POPULAR.

1675
00:59:05,241 --> 00:59:08,744
WE SUPPORTED A NUMBER OF

1676
00:59:08,744 --> 00:59:11,046
TECHNOLOGIES TO SUPPORT MOVING

1677
00:59:11,046 --> 00:59:13,315
RESEARCH AND OPERATIONS TO THE

1678
00:59:13,315 --> 00:59:14,850
CLOUD THROUGH THE STRIDES

1679
00:59:14,850 --> 00:59:19,121
PROGRAM. 

1680
00:59:19,121 --> 00:59:21,257
THE STRIDES INITIATIVE IS OUR

1681
00:59:21,257 --> 00:59:24,927
PARTNERSHIP WITH AWS, GOOGLE

1682
00:59:24,927 --> 00:59:27,997
CLOUD, MICROSOFT AZURE, BUILDING

1683
00:59:27,997 --> 00:59:28,831
TECHNOLOGIES ALIGNED WITH NIH'S

1684
00:59:28,831 --> 00:59:31,066
STRATEGIC PLAN FOR DATA SCIENCE,

1685
00:59:31,066 --> 00:59:35,204
WE WANT TO BUILD MODERN

1686
00:59:35,204 --> 00:59:37,706
INTEGRATED, INTUITIVE AND SECURE

1687
00:59:37,706 --> 00:59:40,342
TECHNOLOGIES, BRINGING COST

1688
00:59:40,342 --> 00:59:41,110
SAVINGS TO THE NIH, SCIENTISTS

1689
00:59:41,110 --> 00:59:45,381
OF THE NIH, AS WELL AS TO THE

1690
00:59:45,381 --> 00:59:46,348
EXTRAMURAL COMMUNITY THROUGH

1691
00:59:46,348 --> 00:59:50,953
STRIDES, AND THROUGH THE STRIDES

1692
00:59:50,953 --> 00:59:52,488
DISCOUNTS, AND WE HAVE STRONG

1693
00:59:52,488 --> 00:59:54,890
PARTNERSHIPS FOR R&D

1694
00:59:54,890 --> 00:59:55,858
COLLABORATIVE ENGAGEMENTS WITH

1695
00:59:55,858 --> 00:59:58,093
THOSE PROVIDERS WHO CAN HELP US

1696
00:59:58,093 --> 01:00:00,930
ADOPT, YOU KNOW, THE LATEST AND

1697
01:00:00,930 --> 01:00:04,133
GREATEST IN TERMS OF WHAT WE DO.

1698
01:00:04,133 --> 01:00:09,038
TODAY THERE ARE MORE THAN 364

1699
01:00:09,038 --> 01:00:10,873
MILLION GIGABYTES OF DATA IN

1700
01:00:10,873 --> 01:00:11,273
STRIDES.

1701
01:00:11,273 --> 01:00:14,443
BASICALLY EVERY TYPE OF DATA YOU

1702
01:00:14,443 --> 01:00:16,345
WOULD IMAGINE, MOLECULAR, REAL

1703
01:00:16,345 --> 01:00:17,780
WORLD CLINICAL DATA, ESSENTIALLY

1704
01:00:17,780 --> 01:00:21,183
EVERYTHING THAT MIGHT BE USEFUL

1705
01:00:21,183 --> 01:00:22,818
IN BIOMEDICAL IS SOMEWHERE

1706
01:00:22,818 --> 01:00:26,655
WITHIN THE STRIDES ORGANIZATION.

1707
01:00:26,655 --> 01:00:29,825
WE'VE ONBOARDED 2700 RESEARCH

1708
01:00:29,825 --> 01:00:33,195
PROGRAMS, AND HAVE TRAINED MORE

1709
01:00:33,195 --> 01:00:34,630
THAN 5500 INVESTIGATION ON USE

1710
01:00:34,630 --> 01:00:35,497
OF STRIDES.

1711
01:00:35,497 --> 01:00:37,032
STRIDES IS A WONDERFUL

1712
01:00:37,032 --> 01:00:39,101
PARTNERSHIP WITH SUSAN

1713
01:00:39,101 --> 01:00:40,235
GREGURICK'S OFFICE, OFFICE OF

1714
01:00:40,235 --> 01:00:42,371
DATA SCIENCE STRATEGY, AND WE

1715
01:00:42,371 --> 01:00:46,809
ARE INCREDIBLY PROUD TO BE PART

1716
01:00:46,809 --> 01:00:51,647
OF THE PARTNERSHIP SERVING DR.

1717
01:00:51,647 --> 01:00:53,148
GREGURICK'S OFFICE.

1718
01:00:53,148 --> 01:00:54,450
MANY NIH AND NIH-FUNDED RESEARCH

1719
01:00:54,450 --> 01:00:55,351
PROGRAMS ARE IN STRIDES.

1720
01:00:55,351 --> 01:00:59,088
MANY OF THE ONES YOU'VE HEARD

1721
01:00:59,088 --> 01:01:00,089
INCLUDING NICHD PROGRAMS, AND

1722
01:01:00,089 --> 01:01:02,925
REALLY STRIDES GIVES US THAT

1723
01:01:02,925 --> 01:01:04,893
PLATFORM TO BUILD UPON, THAT

1724
01:01:04,893 --> 01:01:08,631
HOPEFULLY WE CAN USE TO LEVERAGE

1725
01:01:08,631 --> 01:01:09,832
AND BUILD MORE INTEROPERABILITY,

1726
01:01:09,832 --> 01:01:11,767
MAKE DATA MORE FAIR, BUT WE WANT

1727
01:01:11,767 --> 01:01:13,636
TO BE MORE EFFICIENT AND MORE,

1728
01:01:13,636 --> 01:01:15,170
YOU KNOW, MAYBE PLUG AND PLAY IN

1729
01:01:15,170 --> 01:01:19,241
TERMS OF HOW WE DO TECHNOLOGIES

1730
01:01:19,241 --> 01:01:20,776
TO ENABLE NEXT GENERATION OF

1731
01:01:20,776 --> 01:01:23,078
BIOMEDICAL COMPUTING AND ENABLE

1732
01:01:23,078 --> 01:01:25,247
THINGS LIKE ADVANCED EMERGENT

1733
01:01:25,247 --> 01:01:27,650
TECHNOLOGIES, LIKE ARTIFICIAL

1734
01:01:27,650 --> 01:01:28,450
INTELLIGENCE, GENERATIVE A.I.,

1735
01:01:28,450 --> 01:01:30,753
LARGE LANGUAGE MODELS, THAT SORT

1736
01:01:30,753 --> 01:01:33,589
OF THING.

1737
01:01:33,589 --> 01:01:37,459
WORKING WITH NIGMS AND ODSS, WE

1738
01:01:37,459 --> 01:01:39,528
HAVE HELPED SUPPORT NIH CLOUD

1739
01:01:39,528 --> 01:01:41,764
LAB, WHICH IS PROBABLY MY

1740
01:01:41,764 --> 01:01:44,533
FAVORITE -- ONE OF MY FAVORITES

1741
01:01:44,533 --> 01:01:46,301
THINGS ABOUT STRIDES.

1742
01:01:46,301 --> 01:01:47,636
STRIDES AT ONE SIDE CAN BE

1743
01:01:47,636 --> 01:01:50,139
CONSIDERED A DISCOUNT OR ACCESS

1744
01:01:50,139 --> 01:01:51,674
TO CLOUD RESOURCES, BUT ON THE

1745
01:01:51,674 --> 01:01:53,409
OTHER SIDE IT'S THAT CENTRAL

1746
01:01:53,409 --> 01:01:54,610
PLATFORM WHERE WE CAN BUILD,

1747
01:01:54,610 --> 01:01:56,912
MORE THAN THE SUM OF ITS PARTS.

1748
01:01:56,912 --> 01:01:58,313
AND CLOUD LAB IS ONE OF THOSE

1749
01:01:58,313 --> 01:02:01,617
WAYS TO GET INTO THAT.

1750
01:02:01,617 --> 01:02:03,485
ANY INVESTIGATOR ASSOCIATED WITH

1751
01:02:03,485 --> 01:02:05,988
AN NIH RESEARCH PROGRAM CAN FILL

1752
01:02:05,988 --> 01:02:12,361
OUT A FORM, GET $500 OF FREE

1753
01:02:12,361 --> 01:02:22,938
CREDIT, ACCESS TO  TAILORED CLOD

1754
01:02:24,606 --> 01:02:24,840
TRAININGS.

1755
01:02:24,840 --> 01:02:27,342
AGAIN, WORKING WITH NIGMS AND

1756
01:02:27,342 --> 01:02:30,312
ODSS, THE CLOUD TRAININGS WERE

1757
01:02:30,312 --> 01:02:32,181
DEVELOPED BY IDeA STATES

1758
01:02:32,181 --> 01:02:34,483
CTRs THAT COLLABORATED TO

1759
01:02:34,483 --> 01:02:36,552
CREATE COLLABORATIVE TRAINING.

1760
01:02:36,552 --> 01:02:39,188
SO WE'VE TAKEN HERE BASICALLY A

1761
01:02:39,188 --> 01:02:40,589
CLOUD DISCOUNT, DISCOUNTED

1762
01:02:40,589 --> 01:02:42,991
ACCESS PROGRAM, AND TURNED THAT

1763
01:02:42,991 --> 01:02:43,692
INTO COLLABORATIVE TRAININGS

1764
01:02:43,692 --> 01:02:46,729
THAT WERE BUILT UPON IT BY

1765
01:02:46,729 --> 01:02:47,730
EXTRAMURALLY FUNDED SITES ACROSS

1766
01:02:47,730 --> 01:02:48,263
THE COUNTRY.

1767
01:02:48,263 --> 01:02:50,799
I THINK THIS IS REALLY A COOL

1768
01:02:50,799 --> 01:02:51,900
USE CASE.

1769
01:02:51,900 --> 01:03:01,510
AND EXAM  EXEMPLIFIES TO SUPPORT

1770
01:03:01,510 --> 01:03:03,679
SCIENCE BETTER.

1771
01:03:03,679 --> 01:03:06,482
DATA IS KEY, BOTH WITHIN NICHD

1772
01:03:06,482 --> 01:03:08,751
STRATEGY BUT ALSO WITHIN

1773
01:03:08,751 --> 01:03:10,152
BASICALLY ALL OF BIOMEDICINE AND

1774
01:03:10,152 --> 01:03:12,154
IT'S REALLY CRITICAL IN TERMS OF

1775
01:03:12,154 --> 01:03:14,022
WHAT WE DO.

1776
01:03:14,022 --> 01:03:20,162
WE'RE TRYING VERY, VERY HARD TO

1777
01:03:20,162 --> 01:03:21,697
WORK WITH INSTITUTES LIKE THIS

1778
01:03:21,697 --> 01:03:26,101
ONE TO HELP DRIVE BUILDING

1779
01:03:26,101 --> 01:03:26,635
EFFICIENT, EASY-TO-USE

1780
01:03:26,635 --> 01:03:27,736
OFF-THE-SHELF TECHNOLOGIES THAT

1781
01:03:27,736 --> 01:03:30,472
CAN MAKE IT -- YOU KNOW, MAKE

1782
01:03:30,472 --> 01:03:33,542
SCIENCE BETTER, MAKE SCIENCE

1783
01:03:33,542 --> 01:03:34,443
EASIER.

1784
01:03:34,443 --> 01:03:37,279
AND HAVE MORE FOCUS ON SCIENCE

1785
01:03:37,279 --> 01:03:39,481
AND HOPEFULLY LESS FOCUS ON THE

1786
01:03:39,481 --> 01:03:39,815
TECHNOLOGIES.

1787
01:03:39,815 --> 01:03:42,017
AND SO WE'RE VERY INTERESTED IN

1788
01:03:42,017 --> 01:03:43,852
DEVELOPING AND SUPPORTING

1789
01:03:43,852 --> 01:03:47,589
STANDARD PLATFORMS TO SUPPORT

1790
01:03:47,589 --> 01:03:49,992
EVERYWHERE FROM DATA, DATA TO

1791
01:03:49,992 --> 01:03:52,161
MANAGING DATA, TO DEVELOPING

1792
01:03:52,161 --> 01:03:55,697
A.I. MODELS, AND TO ENABLE MODEL

1793
01:03:55,697 --> 01:03:58,700
AND DATA SHARING WITHIN AMONGST

1794
01:03:58,700 --> 01:03:59,001
RESEARCHERS.

1795
01:03:59,001 --> 01:04:01,703
THIS IS A SLIDE, IT'S OUT OF

1796
01:04:01,703 --> 01:04:03,672
DATE, COURTESY OF SUSAN

1797
01:04:03,672 --> 01:04:04,406
GREGURICK.

1798
01:04:04,406 --> 01:04:06,875
AND HER OFFICE.

1799
01:04:06,875 --> 01:04:08,410
AND JUST EMPHASIZING THE

1800
01:04:08,410 --> 01:04:10,913
INVESTMENTS THE NIH HAS MADE IN

1801
01:04:10,913 --> 01:04:13,315
ARTIFICIAL INTELLIGENCE HAVE

1802
01:04:13,315 --> 01:04:15,384
BEEN GROWING STEADILY UP TO --

1803
01:04:15,384 --> 01:04:18,153
THIS GOES UP TO THE END OF 2023.

1804
01:04:18,153 --> 01:04:21,223
I NEED AN UPDATED VERSION OF THE

1805
01:04:21,223 --> 01:04:22,724
SLIDE BUT MORE THAN $300 MILLION

1806
01:04:22,724 --> 01:04:24,927
A YEAR BASICALLY TWO YEARS AGO,

1807
01:04:24,927 --> 01:04:26,762
AND THIS HAS CONTINUED TO GROW.

1808
01:04:26,762 --> 01:04:28,764
I THINK OBVIOUSLY A.I. IS

1809
01:04:28,764 --> 01:04:29,064
EVERYWHERE.

1810
01:04:29,064 --> 01:04:30,032
IT'S NOT TOTALLY CLEAR WHERE

1811
01:04:30,032 --> 01:04:30,399
IT'S GOING.

1812
01:04:30,399 --> 01:04:32,801
I THINK THERE ARE LOTS OF

1813
01:04:32,801 --> 01:04:34,336
OPPORTUNITIES FOR RESEARCH TO

1814
01:04:34,336 --> 01:04:37,072
SUPPORT IT AND THE TECHNOLOGY

1815
01:04:37,072 --> 01:04:39,274
THAT WE PROVIDE REALLY DRIVES US

1816
01:04:39,274 --> 01:04:42,411
TO HELP SUPPORT THIS AS WELL AS

1817
01:04:42,411 --> 01:04:43,111
WE CAN.

1818
01:04:43,111 --> 01:04:45,147
THERE ARE A NUMBER OF PLATFORMS

1819
01:04:45,147 --> 01:04:46,849
THAT EMERGED WITHIN THE CLOUD

1820
01:04:46,849 --> 01:04:49,051
THAT HELPED MANAGE DATA TO HELP

1821
01:04:49,051 --> 01:04:50,886
DATA WORKFLOWS AND HELP GIVE

1822
01:04:50,886 --> 01:04:52,888
PEOPLE ENVIRONMENTS THAT SUPPORT

1823
01:04:52,888 --> 01:04:54,823
THE THINGS RESEARCHERS NEED TO

1824
01:04:54,823 --> 01:04:57,459
DO, FROM DATA SHARING TO

1825
01:04:57,459 --> 01:05:01,864
ANALYSIS, TO BRINGING DATA

1826
01:05:01,864 --> 01:05:03,599
TOGETHER, TO STORING AND

1827
01:05:03,599 --> 01:05:05,801
MANAGING AND DOING ANALYTICS ON

1828
01:05:05,801 --> 01:05:08,203
SPECIFIC DATA, DOING SCIENTIFIC

1829
01:05:08,203 --> 01:05:08,837
COMPUTING ON DATA.

1830
01:05:08,837 --> 01:05:11,473
YOU MAY HAVE HEARD OF SOME

1831
01:05:11,473 --> 01:05:15,978
PLATFORMS OUT THERE, THERE ARE A

1832
01:05:15,978 --> 01:05:20,582
NUMBER OF GEN 3, TERRA, CAVATIA,

1833
01:05:20,582 --> 01:05:23,552
FOUNDRY, BRICS PLATFORM THAT WE

1834
01:05:23,552 --> 01:05:23,986
SUPPORT.

1835
01:05:23,986 --> 01:05:26,622
AND ARE HELPING INVESTIGATORS

1836
01:05:26,622 --> 01:05:27,923
ADOPT THESE COMMON PLATFORMS,

1837
01:05:27,923 --> 01:05:29,791
TRYING TO HELP MAKE THEM

1838
01:05:29,791 --> 01:05:32,194
INTEROPEARABLE AND MORE EASY TO

1839
01:05:32,194 --> 01:05:32,527
USE.

1840
01:05:32,527 --> 01:05:34,596
AND THROUGH THAT WE'RE HOPING

1841
01:05:34,596 --> 01:05:40,535
THAT WE CAN BUILD TOOLS MORE

1842
01:05:40,535 --> 01:05:43,038
STANDARDIZED TO MAKE THEM MORE

1843
01:05:43,038 --> 01:05:45,107
INTEROPEARABLE AND NEED MORE

1844
01:05:45,107 --> 01:05:47,542
ENTERPRISE THINKING HOW WE THINK

1845
01:05:47,542 --> 01:05:48,844
ABOUT THE DIGITAL ECOSYSTEM OF

1846
01:05:48,844 --> 01:05:50,145
TOOLS THAT WE PROVIDE.

1847
01:05:50,145 --> 01:05:52,014
WE WANT TO TAKE STANDARD-BASED

1848
01:05:52,014 --> 01:05:53,882
APPROACHES TO DO THE WORK THAT

1849
01:05:53,882 --> 01:05:54,983
WE DO.

1850
01:05:54,983 --> 01:05:57,819
ONE GREAT EXAMPLE, A GREAT

1851
01:05:57,819 --> 01:06:00,422
PARTNERSHIP THAT WE HAVE WITH

1852
01:06:00,422 --> 01:06:03,392
NICHD, REBEKAH ROSEN HAS BEEN

1853
01:06:03,392 --> 01:06:11,600
KEY HELPING DEVELOP THIS, NIH

1854
01:06:11,600 --> 01:06:13,035
RESEARCHER AUTH SERVICE, RAS, A

1855
01:06:13,035 --> 01:06:15,771
COMMON TOOL TO LOG IN AND

1856
01:06:15,771 --> 01:06:16,238
AUTHENTICATE.

1857
01:06:16,238 --> 01:06:18,840
THE SYSTEM HAS TO KNOW YOUR

1858
01:06:18,840 --> 01:06:20,909
IDENTITY AND TRUST YOU WHEN YOU

1859
01:06:20,909 --> 01:06:22,878
COME IN SECURELY.

1860
01:06:22,878 --> 01:06:24,346
WE NEED TO ENABLE AUTHORIZATION,

1861
01:06:24,346 --> 01:06:26,281
SYSTEM NEEDS TO KNOW WHAT DATA

1862
01:06:26,281 --> 01:06:28,083
OR THINGS WITHIN THE SYSTEM YOU

1863
01:06:28,083 --> 01:06:30,085
ARE SECURELY AUTHORIZED TO SEE

1864
01:06:30,085 --> 01:06:32,854
OR HAVE ACCESS TO OR DO THINGS

1865
01:06:32,854 --> 01:06:33,155
WITH.

1866
01:06:33,155 --> 01:06:34,923
RAS IS AN OPEN PLATFORM THAT

1867
01:06:34,923 --> 01:06:37,893
SOLVES THIS PROBLEM BY ENABLING

1868
01:06:37,893 --> 01:06:39,528
RESEARCHERS TO HOPEFULLY NOT

1869
01:06:39,528 --> 01:06:40,796
REINVENT THE WHEEL BUT HAVE A

1870
01:06:40,796 --> 01:06:44,433
COMMON TOOL KIT FOR ENABLING

1871
01:06:44,433 --> 01:06:48,503
BOTH AUTHENTICATION BUT ALSO

1872
01:06:48,503 --> 01:06:50,572
AUTHORIZATION USING STANDARDS

1873
01:06:50,572 --> 01:06:52,774
THAT ENABLE LIKE ESSENTIALLY

1874
01:06:52,774 --> 01:06:54,076
ACCESS, AUTHORIZING ACCESS FOR

1875
01:06:54,076 --> 01:06:55,377
INDIVIDUAL WHO IS TRUSTED THAT

1876
01:06:55,377 --> 01:06:59,348
HAS THE RIGHTS TO DO IT ACROSS

1877
01:06:59,348 --> 01:07:03,585
MULTIPLE RESOURCES.

1878
01:07:03,585 --> 01:07:06,555
AND, AGAIN, THIS IS DRIVEN AND

1879
01:07:06,555 --> 01:07:08,457
FUNDED BY ODSS, CIT IS PROVIDE

1880
01:07:08,457 --> 01:07:09,558
TO BRING THE TECHNOLOGY, AND

1881
01:07:09,558 --> 01:07:14,129
NICHD HAS BEEN A KEY LEADER THAT

1882
01:07:14,129 --> 01:07:16,331
HAVE REALLY SPEARHEADED THE

1883
01:07:16,331 --> 01:07:17,666
IMPLEMENTATION AND DRIVING OF

1884
01:07:17,666 --> 01:07:20,602
RAS, SO REALLY PROUD OF THIS

1885
01:07:20,602 --> 01:07:22,337
PARTNERSHIP WITH YOU.

1886
01:07:22,337 --> 01:07:25,340
RAS IS A LEGO, I THINK OF LEGO

1887
01:07:25,340 --> 01:07:28,076
BLOCKS MODULAR, OPEN BLOCKS THAT

1888
01:07:28,076 --> 01:07:28,744
CONTRIBUTE TO GLOBAL BIOMEDICAL

1889
01:07:28,744 --> 01:07:31,146
CYBER INFRASTRUCTURE SO WE DON'T

1890
01:07:31,146 --> 01:07:32,781
HAVE TO KEEP REINVENTING THE

1891
01:07:32,781 --> 01:07:34,683
WHEEL EVERY TIME WE WANT TO

1892
01:07:34,683 --> 01:07:36,852
INCREASE OR IMPLEMENT NEW

1893
01:07:36,852 --> 01:07:37,285
FUNCTIONALITY.

1894
01:07:37,285 --> 01:07:39,254
WHAT'S COMING IN THE FUTURE?

1895
01:07:39,254 --> 01:07:40,889
SOME THINGS YOU'VE ALREADY SEEN

1896
01:07:40,889 --> 01:07:44,059
OR HEARD OF.

1897
01:07:44,059 --> 01:07:45,227
WE'RE INTERESTED IN WORKSPACES

1898
01:07:45,227 --> 01:07:48,130
THAT ARE IN THE CLOUD THAT

1899
01:07:48,130 --> 01:07:49,464
ENABLE DATA INTEGRATION, ENABLE

1900
01:07:49,464 --> 01:07:52,200
ANALYSIS OF DATA, OR USE OF A.I.

1901
01:07:52,200 --> 01:07:54,136
ON DATA IN A SECURE WAY.

1902
01:07:54,136 --> 01:07:55,704
WHEN I WAS AT THE UNIVERSITY OF

1903
01:07:55,704 --> 01:07:57,105
WASHINGTON, I WORKED WITH A

1904
01:07:57,105 --> 01:08:00,475
NUMBER OF KIND OF CLINICAL DATA

1905
01:08:00,475 --> 01:08:02,044
COORDINATING CENTERS COLLECTING

1906
01:08:02,044 --> 01:08:03,879
LIKE GENOMICS DATA BUT ALSO REAL

1907
01:08:03,879 --> 01:08:05,881
WORLD EHR DATA.

1908
01:08:05,881 --> 01:08:08,283
YOU KNOW, RESEARCH CASE

1909
01:08:08,283 --> 01:08:09,584
REPORT-LIKE DATA, REDCap DATA,

1910
01:08:09,584 --> 01:08:11,586
ET CETERA.

1911
01:08:11,586 --> 01:08:14,089
AND THEY WERE IN THE PROCESS OR

1912
01:08:14,089 --> 01:08:15,957
MIGRATED TO THE CLOUD, TO THE

1913
01:08:15,957 --> 01:08:16,925
STRIDES PROGRAM, FOR ALMOST ALL

1914
01:08:16,925 --> 01:08:17,692
OF THEM.

1915
01:08:17,692 --> 01:08:19,094
ONE OF THE CHALLENGES THAT THEY

1916
01:08:19,094 --> 01:08:23,598
HAD WAS THEY WANTED TO CREATE

1917
01:08:23,598 --> 01:08:24,566
INVESTIGATOR SANDBOXES, A WAY

1918
01:08:24,566 --> 01:08:26,234
FOR THEIR INVESTIGATORS TO GET

1919
01:08:26,234 --> 01:08:28,537
ACCESS IN THEIR ENVIRONMENT IN A

1920
01:08:28,537 --> 01:08:33,275
WAY EASY TO SPIN UP AND

1921
01:08:33,275 --> 01:08:36,645
ENVIRONMENT, SECURE, LOW COST,

1922
01:08:36,645 --> 01:08:39,181
SO WE'RE VERY INTERESTING IN

1923
01:08:39,181 --> 01:08:40,816
ENABLING THE SO-CALLED

1924
01:08:40,816 --> 01:08:41,817
WORKSPACES IN STANDARDIZED WAY

1925
01:08:41,817 --> 01:08:43,385
TO SPIN UP AND ENVIRONMENT AND

1926
01:08:43,385 --> 01:08:45,387
CONNECT IT TO DATA USING

1927
01:08:45,387 --> 01:08:46,621
TECHNOLOGIES LIKE RAS WHICH I

1928
01:08:46,621 --> 01:08:47,823
DESCRIBED IN THE PREVIOUS SLIDE

1929
01:08:47,823 --> 01:08:52,861
SUCH THAT WE DON'T HAVE TO

1930
01:08:52,861 --> 01:08:54,596
REINVENT THE WHEEL FOR EVERY

1931
01:08:54,596 --> 01:08:56,264
RESOURCE WE WANT TO DO.

1932
01:08:56,264 --> 01:08:58,667
THE HOPE IS THAT IN THE FUTURE

1933
01:08:58,667 --> 01:08:59,901
WE CAN HAVE, YOU KNOW, IN THE

1934
01:08:59,901 --> 01:09:03,071
FUTURE WE'LL HAVE A VERY

1935
01:09:03,071 --> 01:09:04,239
HOPEFULLY EASY TO USE, I DON'T

1936
01:09:04,239 --> 01:09:10,846
KNOW IF I WANT TO USE THE WORD

1937
01:09:10,846 --> 01:09:12,380
"VERY" BUT PLUG AND PLAY

1938
01:09:12,380 --> 01:09:13,582
ARCHITECTURE TO SPIN UP WHATEVER

1939
01:09:13,582 --> 01:09:17,018
THE NEEDS ARE FOR DOING ANALYSIS

1940
01:09:17,018 --> 01:09:18,920
FOR DATA THAT HAS BEEN PUT INTO

1941
01:09:18,920 --> 01:09:21,123
THE CLOUD IN SOME STANDARDIZED

1942
01:09:21,123 --> 01:09:21,289
WAY.

1943
01:09:21,289 --> 01:09:23,859
AGAIN, ALL OF THESE TECHNOLOGIES

1944
01:09:23,859 --> 01:09:26,394
ARE SERVANT TO THE STRATEGIES

1945
01:09:26,394 --> 01:09:28,930
AND NEEDS OF THE I.C.s IN

1946
01:09:28,930 --> 01:09:31,633
GENERAL AND, AGAIN, NICHD HAS

1947
01:09:31,633 --> 01:09:35,837
BEEN REALLY A LEADER HELPING

1948
01:09:35,837 --> 01:09:37,539
DRIVE WHAT WE'VE DONE AND WE'RE

1949
01:09:37,539 --> 01:09:40,008
GOING TO CONTINUE TO LOOK TO YOU

1950
01:09:40,008 --> 01:09:41,510
FOR MORE LEADERSHIP IN TERMS OF

1951
01:09:41,510 --> 01:09:45,213
HOW WE CAN MAKE THIS WORK SUCH

1952
01:09:45,213 --> 01:09:49,050
THAT THE FUTURE IS EASIER TO USE

1953
01:09:49,050 --> 01:09:50,585
TECHNOLOGIES, AND BARRIERS ARE

1954
01:09:50,585 --> 01:09:56,625
LOWER SO MORE OF THESE

1955
01:09:56,625 --> 01:09:58,260
STANDARDIZED TECHNOLOGIES ARE

1956
01:09:58,260 --> 01:09:58,493
ADOPTED.

1957
01:09:58,493 --> 01:10:01,563
A PLOT OF PROGRAMS UTILIZE

1958
01:10:01,563 --> 01:10:04,366
WORKSPACES TODAY, AS YOU CAN

1959
01:10:04,366 --> 01:10:04,533
SEE.

1960
01:10:04,533 --> 01:10:08,670
AND THERE ARE A LOT OF EFFORTS

1961
01:10:08,670 --> 01:10:11,273
THAT WE ARE HELPING TO DO TO

1962
01:10:11,273 --> 01:10:12,374
HELP SUPPORT THEM.

1963
01:10:12,374 --> 01:10:13,375
SOMETHING ELSE THAT'S

1964
01:10:13,375 --> 01:10:14,910
INTERESTING THAT I REALLY LIKE

1965
01:10:14,910 --> 01:10:17,646
AS WELL THAT WE'RE THINKING A

1966
01:10:17,646 --> 01:10:20,081
LOT ABOUT IS THAT A.I. WON THE

1967
01:10:20,081 --> 01:10:22,684
NOBEL PRIZE IN CHEMISTRY THIS

1968
01:10:22,684 --> 01:10:24,719
YEAR, TWO NOBEL PRIZES ACTUALLY,

1969
01:10:24,719 --> 01:10:27,622
AND DAVID BAKER AND OTHERS WHO

1970
01:10:27,622 --> 01:10:32,527
WON THE PRIZE IN CHEMISTRY FOR

1971
01:10:32,527 --> 01:10:35,630
PROTEIN STRUCTURE PREDICTION.

1972
01:10:35,630 --> 01:10:37,899
ONE THING THAT WASN'T READILY

1973
01:10:37,899 --> 01:10:39,534
APPARENT WAS THAT UNDERNEATH IT

1974
01:10:39,534 --> 01:10:41,736
THE REASON WE KNEW THAT THEY HAD

1975
01:10:41,736 --> 01:10:43,371
SOLVED THIS PROBLEM WAS BECAUSE

1976
01:10:43,371 --> 01:10:44,873
OF A COMMUNITY OF SCIENTISTS

1977
01:10:44,873 --> 01:10:49,578
THAT GOT TOGETHER IN THE EARLY

1978
01:10:49,578 --> 01:10:50,712
1990s AND CREATED A

1979
01:10:50,712 --> 01:10:53,114
COMPETITION CALLED CRITICAL

1980
01:10:53,114 --> 01:10:56,084
ASSESSMENT OF STRUCTURE

1981
01:10:56,084 --> 01:10:57,819
PREDICTION, CASP, SCIENTISTS

1982
01:10:57,819 --> 01:10:59,454
EVALUATED THEIR METHODS, SOLVING

1983
01:10:59,454 --> 01:11:02,524
THE PROTEIN STRUCTURE PREDICTION

1984
01:11:02,524 --> 01:11:02,757
PROBLEM.

1985
01:11:02,757 --> 01:11:04,326
WITHOUT CASP I WOULD ARGUE THE

1986
01:11:04,326 --> 01:11:12,701
FIELD WOULD NOT HAVE ADVANCED

1987
01:11:12,701 --> 01:11:15,437
AND WE WOULDN'T KNOW THE PROBLEM

1988
01:11:15,437 --> 01:11:15,770
WAS SOLVED.

1989
01:11:15,770 --> 01:11:17,439
I'M A HUGE FAN HOW COMMUNITIES

1990
01:11:17,439 --> 01:11:18,940
COME TOGETHER IN THE WORLD OF

1991
01:11:18,940 --> 01:11:22,777
A.I. AND DATA SCIENCE AND RUN OR

1992
01:11:22,777 --> 01:11:23,445
MANAGE THESE SO-CALLED

1993
01:11:23,445 --> 01:11:25,080
CHALLENGES WHICH SOUND LIKE

1994
01:11:25,080 --> 01:11:26,615
COMPETITIONS BUT ARE MORE THAN

1995
01:11:26,615 --> 01:11:28,149
BENCHMARKING OF METHODS OR

1996
01:11:28,149 --> 01:11:30,652
COMPETING AGAINST EACH OTHER FOR

1997
01:11:30,652 --> 01:11:30,885
METHODS.

1998
01:11:30,885 --> 01:11:32,854
THEY ARE REALLY ABOUT

1999
01:11:32,854 --> 01:11:34,055
COMMUNITIES COLLABORATING AND

2000
01:11:34,055 --> 01:11:35,590
WORKING TOGETHER TO SHOW, TO

2001
01:11:35,590 --> 01:11:38,360
IDENTIFY WHAT'S WORKING IN AN

2002
01:11:38,360 --> 01:11:40,195
AREA, WHAT IS MAYBE NOT WORKING,

2003
01:11:40,195 --> 01:11:43,632
HOW DO WE ADVANCE A FIELD.

2004
01:11:43,632 --> 01:11:48,837
CASP IS A GREAT EXAMPLE OVER

2005
01:11:48,837 --> 01:11:50,639
35-YEAR SET OF EXPERIMENTS THAT

2006
01:11:50,639 --> 01:11:52,173
HAPPENED EVERY TWO YEARS THAT

2007
01:11:52,173 --> 01:11:55,577
ENABLED US TO SAY, YEAH, WE'VE

2008
01:11:55,577 --> 01:11:56,778
SOLVED THIS PROBLEM.

2009
01:11:56,778 --> 01:11:59,648
I'M A HUGE FAN OF CRITICAL

2010
01:11:59,648 --> 01:12:00,515
ASSESSMENTS AND DATA CHALLENGES,

2011
01:12:00,515 --> 01:12:02,250
EXPECT TO HEAR MORE FROM US

2012
01:12:02,250 --> 01:12:04,452
ABOUT THIS, HOW CAN WE ENABLE,

2013
01:12:04,452 --> 01:12:06,187
YOU KNOW, UPON ALL THE

2014
01:12:06,187 --> 01:12:07,389
TECHNOLOGIES THAT WE'VE BEEN

2015
01:12:07,389 --> 01:12:10,692
TALKING ABOUT HOW CAN WE ENABLE

2016
01:12:10,692 --> 01:12:14,296
THIS, ENABLE MORE DATA

2017
01:12:14,296 --> 01:12:14,896
SCIENCE-LIKE CHALLENGES IN A

2018
01:12:14,896 --> 01:12:16,698
STANDARDIZED WAY TO MAKE

2019
01:12:16,698 --> 01:12:19,868
ADVANTAGEMENTS HOPEFULLY HAVE

2020
01:12:19,868 --> 01:12:22,604
THE TECHNOLOGY AVAILABLE SO

2021
01:12:22,604 --> 01:12:25,340
RESEARCHERS CAN MAKE THE

2022
01:12:25,340 --> 01:12:27,208
ADVANCEMENTS LIKE THE CASP WORLD

2023
01:12:27,208 --> 01:12:28,443
DID WITH PROTEIN STRUCTURE

2024
01:12:28,443 --> 01:12:28,743
PREDICTION.

2025
01:12:28,743 --> 01:12:30,645
WE HAVE LOTS OF A.I. USE CASES

2026
01:12:30,645 --> 01:12:33,481
IN THE OPERATIONAL WORLD AT THE

2027
01:12:33,481 --> 01:12:33,715
NIH.

2028
01:12:33,715 --> 01:12:34,916
FOR EXAMPLE, HERE'S AN EXAMPLE

2029
01:12:34,916 --> 01:12:40,422
OF A BUSINESS CASE OF USING A

2030
01:12:40,422 --> 01:12:43,725
GENERATIVE A.I. TOOL, TRIALGPT

2031
01:12:43,725 --> 01:12:45,460
THAT ENABLES RESEARCHERS TO

2032
01:12:45,460 --> 01:12:46,895
MATCH PATIENTS TO PARTICULAR

2033
01:12:46,895 --> 01:12:53,802
CLINICAL TRIALS USING LARGE

2034
01:12:53,802 --> 01:12:55,036
LANGUAGE MODELS, OPERATIONAL AND

2035
01:12:55,036 --> 01:12:56,571
USED WE'RE HAD HE NIH.

2036
01:12:56,571 --> 01:12:58,773
THIS LAST LED TO DEVELOPMENT OF

2037
01:12:58,773 --> 01:13:00,742
A NUMBER OF NIH KIND OF

2038
01:13:00,742 --> 01:13:02,043
OPERATIONAL A.I. USE CASES.

2039
01:13:02,043 --> 01:13:04,112
ONE OF THE THINGS THAT I STILL

2040
01:13:04,112 --> 01:13:06,848
TALK ABOUT, I THINK RESEARCHERS

2041
01:13:06,848 --> 01:13:08,049
HAVE LEARNED, RESEARCH, THE

2042
01:13:08,049 --> 01:13:09,351
RESEARCH WORLD, ME AND MY

2043
01:13:09,351 --> 01:13:10,919
COLLEAGUES HAVE LEARNED THIS

2044
01:13:10,919 --> 01:13:12,887
NOW, I THINK, BUT WE'VE ENTERED

2045
01:13:12,887 --> 01:13:16,257
A NEW AGE, THE AGE OF WHAT I

2046
01:13:16,257 --> 01:13:19,627
CALL OPERATIONALLY WHERE WE ARE

2047
01:13:19,627 --> 01:13:23,832
HAVING A.I. LIKE GENERATIVE A.I.

2048
01:13:23,832 --> 01:13:25,500
METHODS IMPLEMENTED WITHOUT A

2049
01:13:25,500 --> 01:13:27,569
DATA SCIENCE ANYWHERE TO BE

2050
01:13:27,569 --> 01:13:29,070
FOUND, BASICALLY AN ADVANCED

2051
01:13:29,070 --> 01:13:30,939
I.T. SYSTEM THAT'S BEING

2052
01:13:30,939 --> 01:13:31,806
IMPLEMENTED.

2053
01:13:31,806 --> 01:13:33,375
COULD BE DRAFTING IN-BOX

2054
01:13:33,375 --> 01:13:34,876
MESSAGES IN EPIC FOR PROVIDERS

2055
01:13:34,876 --> 01:13:36,745
WHEN THEY GET A MESSAGE THROUGH

2056
01:13:36,745 --> 01:13:39,614
MY CHART FROM A PATIENT AND

2057
01:13:39,614 --> 01:13:42,784
DRAFTING THEIR RESPONSE TO

2058
01:13:42,784 --> 01:13:46,287
AMBIENT SCRIBES IN THE CLINIC,

2059
01:13:46,287 --> 01:13:47,622
ACCESS TO ENTERPRISE VERSIONS OF

2060
01:13:47,622 --> 01:13:49,457
ChatGPT, TO HAVE A CHATBOT.

2061
01:13:49,457 --> 01:13:52,861
ALL OF THESE ARE OPERATIONAL

2062
01:13:52,861 --> 01:13:57,632
USES OF A.I. THAT ARE

2063
01:13:57,632 --> 01:14:00,402
IMPLEMENTED AS ADVANCED I.T.

2064
01:14:00,402 --> 01:14:00,635
SYSTEMS.

2065
01:14:00,635 --> 01:14:02,937
AND SO I WANT TO EMPHASIZE WE'VE

2066
01:14:02,937 --> 01:14:06,307
ENTERED THIS NEW ERA OF

2067
01:14:06,307 --> 01:14:07,175
OPERATIONAL A.I. AND RESEARCH IN

2068
01:14:07,175 --> 01:14:09,377
GENERAL WE NEED TO THINK VERY

2069
01:14:09,377 --> 01:14:13,982
CAREFULLY HOW CAN WE SHIFT AND

2070
01:14:13,982 --> 01:14:17,485
REALLY ADAPT TO THIS NEW WORLD

2071
01:14:17,485 --> 01:14:20,021
OF A.I. BEING BASICALLY

2072
01:14:20,021 --> 01:14:20,889
AVAILABLE EVERYWHERE, INTEGRATED

2073
01:14:20,889 --> 01:14:22,323
INTO DIFFERENT PARTS OF OUR

2074
01:14:22,323 --> 01:14:25,727
LIVES AND HOW CAN WE ENSURE

2075
01:14:25,727 --> 01:14:28,663
PARTICULARLY BIOMEDICINE SPACE

2076
01:14:28,663 --> 01:14:29,964
A.I. IS EFFECTIVE, LEGAL,

2077
01:14:29,964 --> 01:14:31,633
ETHICAL, RESPONSIBLE, EQUITABLE.

2078
01:14:31,633 --> 01:14:34,068
THERE ARE LOTS OF A.I. BENEFITS

2079
01:14:34,068 --> 01:14:36,070
TO USE IN THE BUSINESS.

2080
01:14:36,070 --> 01:14:38,006
I DON'T NEED TO OVEREMPHASIZE

2081
01:14:38,006 --> 01:14:41,276
BUT THERE ARE ALSO RISKS ABOUT

2082
01:14:41,276 --> 01:14:43,912
A.I. CAN BE INEQUITABLE, A.I.

2083
01:14:43,912 --> 01:14:46,748
CAN ALLOW ESSENTIAL ACTIVE --

2084
01:14:46,748 --> 01:14:48,583
SENSITIVE DATA TO BE SHARED AND

2085
01:14:48,583 --> 01:14:50,018
TRAIN THE MODEL, THAT MIGHT

2086
01:14:50,018 --> 01:14:51,553
EXPOSE SENSITIVE DATA TO THE

2087
01:14:51,553 --> 01:14:52,754
COMPANY THAT MADE THE A.I. AND

2088
01:14:52,754 --> 01:14:55,490
OTHER USERS OF THAT A.I., CAN

2089
01:14:55,490 --> 01:14:57,625
IMPACT HUMAN SAFETY, CAN IMPACT

2090
01:14:57,625 --> 01:15:00,328
HUMAN RIGHTS, AND CAN DRIFT IN

2091
01:15:00,328 --> 01:15:00,595
ACCURACY.

2092
01:15:00,595 --> 01:15:04,098
THERE'S LOTS OF ISSUES WITH

2093
01:15:04,098 --> 01:15:04,532
IMPLEMENTATION.

2094
01:15:04,532 --> 01:15:06,401
WE'VE BEEN SPEND TIME BUILDING

2095
01:15:06,401 --> 01:15:08,169
GOVERNANCE TO SUPPORT OVERSIGHT

2096
01:15:08,169 --> 01:15:09,003
FOR OPERATIONAL USES.

2097
01:15:09,003 --> 01:15:10,672
I'M GOING TO GO THROUGH THIS

2098
01:15:10,672 --> 01:15:12,974
BRIEFLY SINCE I DON'T HAVE A TON

2099
01:15:12,974 --> 01:15:14,142
OF TIME LEFT.

2100
01:15:14,142 --> 01:15:15,477
ONE OF THE THINGS WE'RE THINKING

2101
01:15:15,477 --> 01:15:17,779
ABOUT IS HOW DO WE BUILD THE

2102
01:15:17,779 --> 01:15:19,280
WORKFLOW TO MANAGE THE

2103
01:15:19,280 --> 01:15:21,282
IMPLEMENTATION OF A.I. AS FAST

2104
01:15:21,282 --> 01:15:25,220
AND RESPONSIBLY AS WE CAN.

2105
01:15:25,220 --> 01:15:27,088
TODAY THERE'S ACTUALLY -- WE

2106
01:15:27,088 --> 01:15:28,857
REPORT TO HHS ANNUALLY ALL OF

2107
01:15:28,857 --> 01:15:32,894
OUR A.I. USE CASES, MORE THAN

2108
01:15:32,894 --> 01:15:33,761
195 OPERATIONAL USES HAPPENING

2109
01:15:33,761 --> 01:15:40,568
AT THE NIH RIGHT NOW, AND 77 OF

2110
01:15:40,568 --> 01:15:45,173
THEM ARE ACTUALLY ACTIVE TODAY.

2111
01:15:45,173 --> 01:15:46,975
ANOTHER EXAMPLE IS THE

2112
01:15:46,975 --> 01:15:48,276
GENERATIVE A.I. SYSTEM THAT'S

2113
01:15:48,276 --> 01:15:50,411
USED TO CLASSIFY DATA MANAGEMENT

2114
01:15:50,411 --> 01:15:53,748
AND SHARING PLANS TO HELP

2115
01:15:53,748 --> 01:15:54,382
PROGRAM OFFICERS CLUSTER AND

2116
01:15:54,382 --> 01:15:57,151
SORT THEM.

2117
01:15:57,151 --> 01:15:59,454
WE ALSO HAVE RECENTLY HELPED

2118
01:15:59,454 --> 01:16:03,024
SUPPORT THE RELEASE OF AN NIH

2119
01:16:03,024 --> 01:16:06,995
SECURE GENERATIVE A.I. CHATBOT

2120
01:16:06,995 --> 01:16:08,129
USING ENTERPRISE ChatGPT

2121
01:16:08,129 --> 01:16:09,731
SUITABLE FOR USE IN THE FEDERAL

2122
01:16:09,731 --> 01:16:11,933
GOVERNMENT, IN FED CLOUD, AND

2123
01:16:11,933 --> 01:16:13,034
WE'VE GIVEN ALL NIH

2124
01:16:13,034 --> 01:16:16,971
INVESTIGATORS ACCESS TO THIS.

2125
01:16:16,971 --> 01:16:22,577
WHEN WE RELEASED CHHIRP FOR

2126
01:16:22,577 --> 01:16:24,979
ACCESS, WE DID AN INTRODUCTORY

2127
01:16:24,979 --> 01:16:27,148
SEMINAR TO INTRODUCE, WITH MORE

2128
01:16:27,148 --> 01:16:30,451
THAN 600 PEOPLE FROM THE NIH

2129
01:16:30,451 --> 01:16:33,288
JOINED TO HEAR ABOUT GAINING

2130
01:16:33,288 --> 01:16:35,623
ACCESS TO A GENERATEIVE A.I.

2131
01:16:35,623 --> 01:16:42,163
CHAT BOUGHT SUITABLE FOR SHARING

2132
01:16:42,163 --> 01:16:46,000
NIH CONFIDENTIAL INFORMATION.

2133
01:16:46,000 --> 01:16:47,936
WE'RE INTRODUCING CO-PILOT, IN

2134
01:16:47,936 --> 01:16:48,436
UNIVERSITIES SIMILAR TO

2135
01:16:48,436 --> 01:16:52,941
IMPLEMENTS YOU'VE SEEN ALSO AT

2136
01:16:52,941 --> 01:16:53,775
YOUR SITE.

2137
01:16:53,775 --> 01:16:56,044
I CAN FINISH AND HAPPY TO TAKE

2138
01:16:56,044 --> 01:16:57,378
QUESTIONS IF THERE'S TIME OR

2139
01:16:57,378 --> 01:16:57,912
WE'RE ALLOWED.

2140
01:16:57,912 --> 01:16:59,480
I WANT TO BRING THIS TOGETHER TO

2141
01:16:59,480 --> 01:17:02,850
THINK ABOUT WHAT ARE THE TOOLS,

2142
01:17:02,850 --> 01:17:03,651
CYBER INFRASTRUCTURE

2143
01:17:03,651 --> 01:17:06,554
TECHNOLOGIES THAT WE CAN BUILD

2144
01:17:06,554 --> 01:17:08,523
THAT CAN BE BUILT ONCE, USED

2145
01:17:08,523 --> 01:17:11,492
MANY TIMES TO ENABLE ALL OF THE

2146
01:17:11,492 --> 01:17:14,562
COMPONENTS OF A DATA AND DATA

2147
01:17:14,562 --> 01:17:15,363
SCIENCE STRATEGY.

2148
01:17:15,363 --> 01:17:17,398
I REALLY THINK ABOUT THIS

2149
01:17:17,398 --> 01:17:18,600
DIGITAL ECOSYSTEM.

2150
01:17:18,600 --> 01:17:20,568
I LOVE TO THINK ABOUT IT LIKE

2151
01:17:20,568 --> 01:17:22,537
LEGO BLOCKS, VERY EASY TO

2152
01:17:22,537 --> 01:17:22,837
UNDERSTAND.

2153
01:17:22,837 --> 01:17:27,342
WE WANT TOOLS TO BE OPEN, TO BE

2154
01:17:27,342 --> 01:17:28,009
REUSABLE, AND INTEROPERABLE SO

2155
01:17:28,009 --> 01:17:30,745
YOU CAN THINK ABOUT WHAT PROBLEM

2156
01:17:30,745 --> 01:17:32,213
YOU WANT TO SOLVE, TAKE

2157
01:17:32,213 --> 01:17:36,117
SOMETHING OFF THE SHELF AND PUT

2158
01:17:36,117 --> 01:17:39,287
IT TOGETHER AND GROW AND SCALE

2159
01:17:39,287 --> 01:17:39,954
IT FROM THERE.

2160
01:17:39,954 --> 01:17:41,789
AND SO THERE'S LOTS OF TOOLS

2161
01:17:41,789 --> 01:17:44,659
THAT YOU COULD IMAGINE THINKING

2162
01:17:44,659 --> 01:17:44,859
ABOUT.

2163
01:17:44,859 --> 01:17:47,629
YOU KNOW, TOOLS THAT GENERATE

2164
01:17:47,629 --> 01:17:49,464
DATA, AND SUPPORTING THE

2165
01:17:49,464 --> 01:17:52,767
PLATFORMS THAT DO THIS, FROM

2166
01:17:52,767 --> 01:17:54,535
BIOINFORMATICS WORKFLOWS TO

2167
01:17:54,535 --> 01:17:55,937
SIMPLE THINGS LIKE

2168
01:17:55,937 --> 01:17:57,238
AUTHORIZATION, AUTHENTICATION

2169
01:17:57,238 --> 01:18:03,645
USE CASE WITH RAS THAT I TALKED

2170
01:18:03,645 --> 01:18:04,579
ABOUT EARLIER.

2171
01:18:04,579 --> 01:18:06,014
I DEVELOPED A LIST OF TEN SETS

2172
01:18:06,014 --> 01:18:08,416
OF PRIORITIES IN THE WORK THAT I

2173
01:18:08,416 --> 01:18:10,385
DO, WHAT WE'RE TRYING TO THINK

2174
01:18:10,385 --> 01:18:11,586
ABOUT, FLOATING ABOUT, LIKE WHAT

2175
01:18:11,586 --> 01:18:13,321
CAN WE SOLVE IN TERMS OF I.T.

2176
01:18:13,321 --> 01:18:15,990
THAT WE MIGHT GO AFTER.

2177
01:18:15,990 --> 01:18:17,325
WE'VE GROUPED INTO TWO GROUPS,

2178
01:18:17,325 --> 01:18:18,393
THINGS THAT HAPPEN WITHIN THE

2179
01:18:18,393 --> 01:18:21,329
NIH AND THINGS THAT WE CAN DO

2180
01:18:21,329 --> 01:18:22,764
THAT HAPPEN POTENTIALLY BROADLY

2181
01:18:22,764 --> 01:18:24,499
WITH THE RESEARCH COMMUNITY AT

2182
01:18:24,499 --> 01:18:24,699
LARGE.

2183
01:18:24,699 --> 01:18:27,735
WITHIN THE NIH WE'RE INTERESTED

2184
01:18:27,735 --> 01:18:31,572
IN ADVANCING HELPING BUILD

2185
01:18:31,572 --> 01:18:32,974
TECHNOLOGY TO SUPPORT CLINICAL

2186
01:18:32,974 --> 01:18:34,876
RESEARCH AND TRIALS, SUPPORT THE

2187
01:18:34,876 --> 01:18:35,643
NIH DATA STRATEGY, SUPPORT

2188
01:18:35,643 --> 01:18:39,047
TECHNOLOGY CAREERS AT THE NIH.

2189
01:18:39,047 --> 01:18:41,315
WE INVEST IN A.I., WE NEED TO

2190
01:18:41,315 --> 01:18:42,316
INVEST IN I.T.

2191
01:18:42,316 --> 01:18:43,518
AND SUPPORT USE OF OPERATIONAL

2192
01:18:43,518 --> 01:18:47,588
I.T. AT THE NIH AND ENABLE

2193
01:18:47,588 --> 01:18:49,090
ENTERPRISE SYSTEMS WITHIN THE

2194
01:18:49,090 --> 01:18:50,692
NIH IN THE CLOUD THROUGH THE

2195
01:18:50,692 --> 01:18:51,893
STRIDES PROGRAM.

2196
01:18:51,893 --> 01:18:53,695
THE BROADER FOCUS OF THE

2197
01:18:53,695 --> 01:18:54,896
BIOMEDICAL RESEARCH COMMUNITY

2198
01:18:54,896 --> 01:18:56,264
AGAIN THINGS WE'RE FLOATING,

2199
01:18:56,264 --> 01:18:58,066
LOOKING FOR FEEDBACK.

2200
01:18:58,066 --> 01:19:00,368
ONE IS REALLY CONVENING AND

2201
01:19:00,368 --> 01:19:01,602
LEADING BIOMEDICAL SCIENCES

2202
01:19:01,602 --> 01:19:04,205
TECHNOLOGY COMMUNITY, TECHNOLOGY

2203
01:19:04,205 --> 01:19:04,872
I.I

2204
01:19:04,872 --> 01:19:09,143
STS WHO PROVIDE

2205
01:19:09,143 --> 01:19:12,413
SOLUTIONS AND LEAD AND ENGAGE,

2206
01:19:12,413 --> 01:19:14,816
GIVE THEM A FORUM TO WORK

2207
01:19:14,816 --> 01:19:16,117
TOGETHER TO SOLVE THESE MODULAR

2208
01:19:16,117 --> 01:19:18,419
PROBLEMS THAT WE HAVE THAT

2209
01:19:18,419 --> 01:19:21,389
OFTENTIMES WE SOLVE IN PARALLEL.

2210
01:19:21,389 --> 01:19:23,991
WE WANT TO ADVANCE THE

2211
01:19:23,991 --> 01:19:27,862
BIOMEDICAL WORK FORCE, TECH

2212
01:19:27,862 --> 01:19:29,263
FLUENCY, AND HELP MAKE BETTER

2213
01:19:29,263 --> 01:19:31,132
DECISIONS WITH USE OF

2214
01:19:31,132 --> 01:19:31,566
TECHNOLOGY.

2215
01:19:31,566 --> 01:19:34,402
WE WANT TO SUPPORT SERVICES IN

2216
01:19:34,402 --> 01:19:36,938
THE CLOUD ECOSYSTEM AND SUPPORT

2217
01:19:36,938 --> 01:19:38,339
NIH CORE RESEARCH FACILITIES

2218
01:19:38,339 --> 01:19:39,674
GENERATING DATA AND HAVE

2219
01:19:39,674 --> 01:19:42,076
PROBLEMS SHARING DATA AND

2220
01:19:42,076 --> 01:19:43,177
MANAGING THE DATA, ARCHIVING

2221
01:19:43,177 --> 01:19:44,579
DATA, ET CETERA.

2222
01:19:44,579 --> 01:19:45,813
THAT'S ANOTHER AREA WE'RE

2223
01:19:45,813 --> 01:19:48,883
THINKING ABOUT.

2224
01:19:48,883 --> 01:19:50,184
WE HAVE A BROAD FORTHCOMING

2225
01:19:50,184 --> 01:19:52,720
NEWSLETTER, YOU CAN SEE IT ON MY

2226
01:19:52,720 --> 01:19:57,759
LINKED IN, OR FRONT PAGE OF CIT.

2227
01:19:57,759 --> 01:20:01,529
WILL THAT -- WITH THAT I WILL

2228
01:20:01,529 --> 01:20:03,264
FINISH AND THANK YOU FOR THE

2229
01:20:03,264 --> 01:20:05,166
OPPORTUNITY, A HUGE HONOR TO BE

2230
01:20:05,166 --> 01:20:07,034
HERE, AND I LOOK FORWARD TO

2231
01:20:07,034 --> 01:20:08,970
WORKING WITH NICHD IN THE

2232
01:20:08,970 --> 01:20:09,370
FUTURE.

2233
01:20:09,370 --> 01:20:13,641
YOU'VE BEEN GREAT LEADERS AND

2234
01:20:13,641 --> 01:20:13,908
PARTNERS.

2235
01:20:13,908 --> 01:20:15,276
>> THANKS, SEAN, FOR
JOINING US

2236
01:20:15,276 --> 01:20:16,477
TODAY.

2237
01:20:16,477 --> 01:20:18,479
THAT WAS A WHIRLWIND TOUR OF

2238
01:20:18,479 --> 01:20:23,084
WHAT YOU AND ADELE AND SO MANY,

2239
01:20:23,084 --> 01:20:24,185
IVOR AND YOUR COLLEAGUES HAVE

2240
01:20:24,185 --> 01:20:25,486
BEEN UP TO.

2241
01:20:25,486 --> 01:20:27,355
WE HAVE ANOTHER SPEAKER BUT I

2242
01:20:27,355 --> 01:20:28,122
WILL INVITE FOLKS IF THEY WOULD

2243
01:20:28,122 --> 01:20:30,625
LIKE IN THE CHAT TO ASK YOU A

2244
01:20:30,625 --> 01:20:33,261
COUPLE QUESTIONS THERE BECAUSE

2245
01:20:33,261 --> 01:20:36,531
WE DO HAVE DR. KEN MANDL TO TALK

2246
01:20:36,531 --> 01:20:39,167
ABOUT PRACTICAL PIECES OF HEALTH

2247
01:20:39,167 --> 01:20:40,067
INFORMATICS HERE BUT, SEAN, I

2248
01:20:40,067 --> 01:20:42,036
WANT TO THANK YOU FOR YOUR

2249
01:20:42,036 --> 01:20:42,470
PARTNERSHIP.

2250
01:20:42,470 --> 01:20:44,972
IT'S BEEN TREMENDOUS TO BUILD

2251
01:20:44,972 --> 01:20:48,409
OUT SOME OF THE CAPABILITIES AND

2252
01:20:48,409 --> 01:20:50,144
SUPPORT THAT YOU'VE GIVEN TO OUR

2253
01:20:50,144 --> 01:20:51,012
SYSTEMS IS INCREDIBLE.

2254
01:20:51,012 --> 01:20:55,316
THANK YOU FOR JOINING US TODAY.

2255
01:20:55,316 --> 01:20:56,184
>> GREAT, THANK YOU.

2256
01:20:56,184 --> 01:20:58,486
>> WITH THAT I'LL SAY IT'S
A

2257
01:20:58,486 --> 01:21:04,292
PLEASURE TO INTRODUCE DR. KEN

2258
01:21:04,292 --> 01:21:04,926
 KEN

2259
01:21:04,926 --> 01:21:07,662
MANDL, DIRECTING A COMPUTATIONAL

2260
01:21:07,662 --> 01:21:09,330
HEALTH INFORMATICS PROGRAM AT

2261
01:21:09,330 --> 01:21:12,500
BOSTON CHILDREN'S HOSPITAL, AND

2262
01:21:12,500 --> 01:21:13,901
LINDBERG PROFESSOR OF PEDIATRICS

2263
01:21:13,901 --> 01:21:16,337
AT HARVARD MEDICAL SCHOOL,

2264
01:21:16,337 --> 01:21:20,274
TRAINED AS PEDIATRICIAN,

2265
01:21:20,274 --> 01:21:21,909
PEDIATRIC EMERGENCY PHYSICIAN, A

2266
01:21:21,909 --> 01:21:22,877
MEMBER OF THE NATIONAL ACADEMY

2267
01:21:22,877 --> 01:21:27,715
OF MEDICINE, PART OF ITS

2268
01:21:27,715 --> 01:21:29,450
LEADERSHIP CONSORTIUM.

2269
01:21:29,450 --> 01:21:32,286
DR. MANDL ADVISED TWO DIRECTORS

2270
01:21:32,286 --> 01:21:34,055
OF THE U.S. CENTERS FOR DISEASE

2271
01:21:34,055 --> 01:21:40,228
CONTROL AND CHAIRING BOARD OF

2272
01:21:40,228 --> 01:21:40,862
SCIENTIFIC COUNSELORS NATIONAL

2273
01:21:40,862 --> 01:21:42,029
LIBRARY OF MEDICINE.

2274
01:21:42,029 --> 01:21:43,664
THANK YOU FOR AGREEING TO

2275
01:21:43,664 --> 01:21:45,399
PARTICIPATE AND PRESENT.

2276
01:21:45,399 --> 01:21:50,238
>> IT'S AN HONOR TO BE
HERE.

2277
01:21:50,238 --> 01:21:52,406
AND I'M REALLY PARTICULARLY

2278
01:21:52,406 --> 01:21:54,709
APPRECIATING HAVING JUST HEARD

2279
01:21:54,709 --> 01:21:57,678
SEAN'S, AS YOU SAID, WHIRLWIND

2280
01:21:57,678 --> 01:21:57,979
TOUR.

2281
01:21:57,979 --> 01:21:59,747
AND I HAD THE PLEASURE TO KNOW

2282
01:21:59,747 --> 01:22:02,817
SEAN AND BE FAMILIAR WITH HIS

2283
01:22:02,817 --> 01:22:03,017
WORK.

2284
01:22:03,017 --> 01:22:03,918
IT'S AMAZING WHAT HE'S

2285
01:22:03,918 --> 01:22:06,654
ACCOMPLISHED FOR THE NIH IN SUCH

2286
01:22:06,654 --> 01:22:07,388
A SHORT TIME.

2287
01:22:07,388 --> 01:22:15,196
I WOULDN'T SAY MY TALK IS

2288
01:22:15,196 --> 01:22:18,032
COMPLEMENTARY WITH HIS.

2289
01:22:18,032 --> 01:22:20,101
BUT RIFFING WITH MANY OF THE

2290
01:22:20,101 --> 01:22:21,535
THEMES SEAN BROUGHT UP.

2291
01:22:21,535 --> 01:22:25,706
YOU MENTIONED IN MY BIO NATIONAL

2292
01:22:25,706 --> 01:22:28,976
ACADEMY OF MEDICINE DIGITAL

2293
01:22:28,976 --> 01:22:31,178
HEALTH ACTION COLLABORATIVE, AND

2294
01:22:31,178 --> 01:22:35,149
A.I. COLLABORATIVE, IT'S COMING

2295
01:22:35,149 --> 01:22:39,520
OUT WITH PETER LEE OF MICROSOFT

2296
01:22:39,520 --> 01:22:43,891
HEALTH, AND COMING OUT WITH A

2297
01:22:43,891 --> 01:22:44,992
DIGITAL ARCHITECTURE VISION

2298
01:22:44,992 --> 01:22:45,760
SHORTLY.

2299
01:22:45,760 --> 01:22:47,828
THAT'S SOMETHING TO KEEP AN EYE

2300
01:22:47,828 --> 01:22:49,797
OUT FOR, PROBABLY THIS SUMMER OR

2301
01:22:49,797 --> 01:22:51,332
EARLY FALL THAT WILL ECHO SOME

2302
01:22:51,332 --> 01:22:55,703
OF THE THEMES THAT SEAN AND I

2303
01:22:55,703 --> 01:22:58,873
ARE PRESENTING.

2304
01:22:58,873 --> 01:23:01,075
SO, FOR PEDIATRIC RESEARCH,

2305
01:23:01,075 --> 01:23:03,244
THAT'S A BROAD TOPIC.

2306
01:23:03,244 --> 01:23:04,879
I'M GOING TO FOCUS TO START WITH

2307
01:23:04,879 --> 01:23:09,383
ON A COUPLE OF SORT OF

2308
01:23:09,383 --> 01:23:10,685
DIAGNOSTIC USE CASES WITHIN

2309
01:23:10,685 --> 01:23:14,522
PEDIATRICS TO ILLUSTRATE HOW WE

2310
01:23:14,522 --> 01:23:15,389
MIGHT THINK ABOUT BRINGING

2311
01:23:15,389 --> 01:23:16,924
TECHNOLOGY IN SUPPORT OF THAT

2312
01:23:16,924 --> 01:23:22,296
WORK ON THE RESEARCH SIDE,

2313
01:23:22,296 --> 01:23:25,566
PUBLIC HEALTH SIDE, ALSO

2314
01:23:25,566 --> 01:23:25,900
CLINICAL SIDE.

2315
01:23:25,900 --> 01:23:29,170
MY OWN SON IS VERY EARLY -- HAD

2316
01:23:29,170 --> 01:23:32,440
VERY EARLY ONSET INFLAMMATORY

2317
01:23:32,440 --> 01:23:33,607
BOWEL DISEASE, FIRST MANIFESTS

2318
01:23:33,607 --> 01:23:37,611
WHEN HE WAS 2 YEARS OLD.

2319
01:23:37,611 --> 01:23:40,081
RIGHT NOW HE'S STANDUP COMEDIAN

2320
01:23:40,081 --> 01:23:43,184
LIVING IN NEW YORK CITY, DOING

2321
01:23:43,184 --> 01:23:47,788
VERY NICELY, SO I'LL CUT TO THAT

2322
01:23:47,788 --> 01:23:50,091
CHASE, BUT IT'S BEEN A JOURNEY.

2323
01:23:50,091 --> 01:23:54,895
AND I WANT TO FOCUS IN ON ONE

2324
01:23:54,895 --> 01:23:57,832
MOMENT IN THAT JOURNEY WHICH IS

2325
01:23:57,832 --> 01:24:00,301
WHEN SUDDENLY IN ADDITION TO

2326
01:24:00,301 --> 01:24:01,736
HAVING THIS INFLAMMATORY BOWEL

2327
01:24:01,736 --> 01:24:04,472
DISEASE, COLITIS, HE ALSO HAD A

2328
01:24:04,472 --> 01:24:08,509
SEIZURE DISORDER. 

2329
01:24:08,509 --> 01:24:15,182
AND I WENT TO HIS PEDIATRIC

2330
01:24:15,182 --> 01:24:20,121
NEUROLOGIST WHO WAS THE TOP

2331
01:24:20,121 --> 01:24:25,493
SEIZURE DOCTOR IN PROBABLY THE

2332
01:24:25,493 --> 01:24:30,398
WORLD, AND THAT DOCTOR, I SAID

2333
01:24:30,398 --> 01:24:32,166
COULD THE SEIZURES AND COLITIS

2334
01:24:32,166 --> 01:24:35,336
BE RELATED TO EACH OTHER?

2335
01:24:35,336 --> 01:24:39,273
AND THE ANSWER WAS UNEQUIVOCALLY

2336
01:24:39,273 --> 01:24:39,740
NO.

2337
01:24:39,740 --> 01:24:48,282
AND I ASKED THE

2338
01:24:48,282 --> 01:24:49,050
GASTROENTEROLOGIST, THE ANSWER

2339
01:24:49,050 --> 01:24:50,117
WAS NO.

2340
01:24:50,117 --> 01:24:52,219
I HAD THIS SECRET WEAPON, TWO

2341
01:24:52,219 --> 01:24:52,987
SECRET WEAPONS.

2342
01:24:52,987 --> 01:24:55,623
ONE WAS DATA.

2343
01:24:55,623 --> 01:24:57,792
THE SECOND WAS POSTDOCTORAL

2344
01:24:57,792 --> 01:24:58,759
FELLOW.

2345
01:24:58,759 --> 01:25:01,862
AND WITH THE DATA AND THE

2346
01:25:01,862 --> 01:25:04,365
POSTDOCTORAL FELLOW WE LOOKED IN

2347
01:25:04,365 --> 01:25:06,233
LARGE DATABASES, INCLUDING OUR

2348
01:25:06,233 --> 01:25:09,403
VERY OWN DATABASE AT MY

2349
01:25:09,403 --> 01:25:11,272
HOSPITAL, TO SEE WHETHER THIS

2350
01:25:11,272 --> 01:25:12,239
RELATIONSHIP EXISTED.

2351
01:25:12,239 --> 01:25:14,975
AND WHEN WE STARTED TO COMPARE

2352
01:25:14,975 --> 01:25:17,311
THE RELATIONSHIP BETWEEN

2353
01:25:17,311 --> 01:25:21,348
SEIZURES AND COLITIS IN THIS ONE

2354
01:25:21,348 --> 01:25:23,217
CONDITION, SEIZURES AND COLITIS,

2355
01:25:23,217 --> 01:25:26,287
WE DECIDED TO BROADEN AND LOOK

2356
01:25:26,287 --> 01:25:27,922
ACROSS ALL AUTOIMMUNE

2357
01:25:27,922 --> 01:25:28,823
CONDITIONS.

2358
01:25:28,823 --> 01:25:31,859
AND TURNS OUT THAT ACROSS ALL

2359
01:25:31,859 --> 01:25:33,094
AUTOIMMUNE CONDITIONS, THE

2360
01:25:33,094 --> 01:25:35,062
INCIDENCE OF SEIZURES IS

2361
01:25:35,062 --> 01:25:35,496
ELEVATED.

2362
01:25:35,496 --> 01:25:43,737
SO THERE ARE IN SOME WAY

2363
01:25:43,737 --> 01:25:45,139
CONNECTED MECHANISTICALLY,

2364
01:25:45,139 --> 01:25:46,240
PERHAPS GENETICALLY, PERHAPS

2365
01:25:46,240 --> 01:25:49,577
THROUGH SOME INSULT, PERHAPS

2366
01:25:49,577 --> 01:25:52,279
THROUGH THE MICROBIOME, PERHAPS

2367
01:25:52,279 --> 01:25:53,047
THROUGH BRAIN-GUT ACCESS, BUT

2368
01:25:53,047 --> 01:25:54,348
THEY ARE CONNECTED.

2369
01:25:54,348 --> 01:25:56,550
AND BECAUSE TWO OF THE TOP

2370
01:25:56,550 --> 01:25:58,752
CLINICIANS IN THEIR FIELDS

2371
01:25:58,752 --> 01:26:00,588
COULDN'T SEE THIS, COULDN'T SORT

2372
01:26:00,588 --> 01:26:02,756
OF FOLLOW THIS IN THEIR OWN

2373
01:26:02,756 --> 01:26:04,058
EXPERIENCE, WHAT WE HAVE TO

2374
01:26:04,058 --> 01:26:08,529
REMEMBER IS THAT THERE ARE

2375
01:26:08,529 --> 01:26:09,230
PATTERNS THAT ARE MUCH LARGER

2376
01:26:09,230 --> 01:26:12,533
THAN ANYTHING THE MOST

2377
01:26:12,533 --> 01:26:14,702
EXPERIENCED CLINICAL BRAINS CAN

2378
01:26:14,702 --> 01:26:17,872
DISCERN, PURELY FROM CLINICAL

2379
01:26:17,872 --> 01:26:18,172
EXPERIENCE.

2380
01:26:18,172 --> 01:26:20,941
AND LARGE SCALE ACCESS TO DATA

2381
01:26:20,941 --> 01:26:22,910
AND CAPTURE OF PATIENTS'

2382
01:26:22,910 --> 01:26:24,979
EXPERIENCE, MULTI-MODAL DATA, IS

2383
01:26:24,979 --> 01:26:27,515
WHAT'S GOING TO MAKE SHE'S --

2384
01:26:27,515 --> 01:26:29,016
WHAT'S GOING TO ELUCIDATE THESE

2385
01:26:29,016 --> 01:26:30,818
TYPES OF RELATIONSHIPS.

2386
01:26:30,818 --> 01:26:33,754
SO, IF YOU -- AND WE ENDED UP

2387
01:26:33,754 --> 01:26:35,689
PUBLISHING THIS PAPER IN JAMA

2388
01:26:35,689 --> 01:26:38,325
NEUROLOGY, EARLY IN THE KIND OF

2389
01:26:38,325 --> 01:26:39,426
BRAIN-GUT ACCESS LITERATURE

2390
01:26:39,426 --> 01:26:47,768
WHICH IS REALLY NOW  BRAIN-GUT

2391
01:26:47,768 --> 01:26:49,270
ACCESS IS A VERY HOT TOPIC.

2392
01:26:49,270 --> 01:26:51,105
IF YOU THINK ABOUT THE

2393
01:26:51,105 --> 01:26:52,673
PERSPECTIVE OF DIAGNOSIS, A

2394
01:26:52,673 --> 01:26:56,610
LITTLE BIT MORE, YOU MAY RECALL

2395
01:26:56,610 --> 01:26:58,145
WILLIAM OSLER SAID JUST LISTEN

2396
01:26:58,145 --> 01:27:03,184
TO YOUR PATIENT, HE IS TELLING

2397
01:27:03,184 --> 01:27:04,185
YOU THE DIAGNOSIS.

2398
01:27:04,185 --> 01:27:06,854
AND, YES, WE LISTEN TO OUR

2399
01:27:06,854 --> 01:27:11,091
PATIENT, AND THERE'S A LOT TO BE

2400
01:27:11,091 --> 01:27:12,726
DISCERNED FROM THAT CLINICIAN

2401
01:27:12,726 --> 01:27:14,495
INTERVIEW, WITH THE PATIENT.

2402
01:27:14,495 --> 01:27:16,230
BUT WE CAN LISTEN TO OTHER

2403
01:27:16,230 --> 01:27:20,701
THINGS AS WELL NOW.

2404
01:27:20,701 --> 01:27:25,773
SO AROUND 2016 THERE WAS A

2405
01:27:25,773 --> 01:27:29,243
PUBLICATION IN JAMA, WHERE

2406
01:27:29,243 --> 01:27:32,313
GOOGLE USED ITS PLAIN A.I.

2407
01:27:32,313 --> 01:27:35,616
ALGORITHM TO DIAGNOSE DIABETIC

2408
01:27:35,616 --> 01:27:36,717
RETINOPATHY FROM RETINAL SCANS,

2409
01:27:36,717 --> 01:27:38,786
FROM PHOTOGRAPHS OF THE RETINA.

2410
01:27:38,786 --> 01:27:41,522
AND TO STAGE IT AS WELL.

2411
01:27:41,522 --> 01:27:43,991
AND IN A THEME THAT WE'VE SEEN

2412
01:27:43,991 --> 01:27:48,996
AGAIN AND AGAIN, IN THE MEDICAL

2413
01:27:48,996 --> 01:27:56,503
LITERATURE, THE A.I.

2414
01:27:56,503 --> 01:27:58,172
OUTPERFORMED THE

2415
01:27:58,172 --> 01:27:58,572
OPHTHALMOLOGISTS.

2416
01:27:58,572 --> 01:27:59,240
TO UPDATE OSLER , I WILL LISTEN

2417
01:27:59,240 --> 01:28:00,374
TOKING YOUR PATIENT, HE'S

2418
01:28:00,374 --> 01:28:01,976
TELLING YOU THE DIAGNOSIS, WE

2419
01:28:01,976 --> 01:28:06,680
MIGHT WANT TO THINK LISTEN TO

2420
01:28:06,680 --> 01:28:07,481
ONE MILLION ANNOTATED

2421
01:28:07,481 --> 01:28:08,249
PHOTOGRAPHIC SCANS.

2422
01:28:08,249 --> 01:28:10,417
THEY TELL YOU THE DIAGNOSIS.

2423
01:28:10,417 --> 01:28:13,254
AND WE HAVE THE CAPACITY BECAUSE

2424
01:28:13,254 --> 01:28:16,090
OF MANY THINGS SEAN WAS TALKING

2425
01:28:16,090 --> 01:28:25,866
ABOUT, WE  HAVEY A.I., CLOUD

2426
01:28:25,866 --> 01:28:26,433
COMPUTING, COMPUTATION,

2427
01:28:26,433 --> 01:28:28,535
INEXPENSIVE STORAGE, NEW MEANS

2428
01:28:28,535 --> 01:28:29,837
OF MULTI-MODAL DATA CAPTURE SO

2429
01:28:29,837 --> 01:28:32,339
WE CAN DO THIS.

2430
01:28:32,339 --> 01:28:35,542
TURNS OUT THAT THE BACKGROUND OF

2431
01:28:35,542 --> 01:28:40,247
INFORMATION UPON WHICH A

2432
01:28:40,247 --> 01:28:42,416
DIAGNOSIS IS MADE IS CRITICALLY

2433
01:28:42,416 --> 01:28:43,250
IMPORTANT, OFTEN NOT

2434
01:28:43,250 --> 01:28:43,751
QUANTITATIVELY CAPTURED.

2435
01:28:43,751 --> 01:28:47,554
FOR EXAMPLE THERE WAS A STUDY BY

2436
01:28:47,554 --> 01:28:49,089
RAJ MONRAY AND TEAM IN THE NEW

2437
01:28:49,089 --> 01:28:53,360
ENGLAND JOURNAL THAT SHOWED

2438
01:28:53,360 --> 01:28:56,130
PATIENTS WITH HYPERTROPHIC

2439
01:28:56,130 --> 01:28:58,299
CARDIOMYOPATHY, WHICH HAD

2440
01:28:58,299 --> 01:29:08,842
GENOMIC VARIANTS PRESUMED TO BE

2441
01:29:11,278 --> 01:29:13,647
PATH IGG KNOW MONIC IF YOU HAD

2442
01:29:13,647 --> 01:29:15,949
THE VARIANT, THAT HAD TO DO THE

2443
01:29:15,949 --> 01:29:17,151
BACKGROUND, CONTEXT IN WHICH

2444
01:29:17,151 --> 01:29:23,424
DIAGNOSES WERE BEING MADE AND

2445
01:29:23,424 --> 01:29:24,625
CONTEXT TRUE WHICH DATASETS WERE

2446
01:29:24,625 --> 01:29:25,826
PUT TOGETHER.

2447
01:29:25,826 --> 01:29:30,531
THIS IDEA OF PRIOR PROBABILITY

2448
01:29:30,531 --> 01:29:33,200
IS NOT WELL HANDLED IN OUR

2449
01:29:33,200 --> 01:29:35,636
HEALTHCARE SYSTEM. 

2450
01:29:35,636 --> 01:29:46,180
AND PAPER THAT I PUBLISHED IN AN

2451
01:29:47,514 --> 01:29:47,581
N

2452
01:29:47,581 --> 01:29:50,617
ALS, WHEN THE KID HAS A SORE

2453
01:29:50,617 --> 01:29:53,687
THROAT, THE QUESTION IS, IS

2454
01:29:53,687 --> 01:29:55,089
STREP GOING AROUND.

2455
01:29:55,089 --> 01:29:56,757
IF IT'S NOT, IT'S PROBABLY NOT

2456
01:29:56,757 --> 01:29:57,391
STREP.

2457
01:29:57,391 --> 01:29:59,026
IN THE HUGE DATASET WE TOOK A

2458
01:29:59,026 --> 01:30:01,762
LOOK TO SEE WHAT THE PROBABILITY

2459
01:30:01,762 --> 01:30:03,530
OF A TRUE POSITIVE STREP TEST

2460
01:30:03,530 --> 01:30:04,998
WAS, WHETHER STREP WAS GOING

2461
01:30:04,998 --> 01:30:07,735
AROUND OR STREP WAS NOT GOING

2462
01:30:07,735 --> 01:30:10,437
AROUND, IN THAT LOCAL AREA.

2463
01:30:10,437 --> 01:30:12,673
AND WE WERE ABLE TO ADJUST FOR

2464
01:30:12,673 --> 01:30:19,646
VARIABLE WE MADE UP, INCREDIBLY

2465
01:30:19,646 --> 01:30:21,615
SIMPLE, CALLED THE LOCAL

2466
01:30:21,615 --> 01:30:22,649
PROPORTION POSITIVE, WHICH IS

2467
01:30:22,649 --> 01:30:24,051
JUST POSITIVE OVER NEGATIVE OF

2468
01:30:24,051 --> 01:30:26,854
STREP AND WHEN WE ADJUSTED FOR

2469
01:30:26,854 --> 01:30:29,857
THAT WE GOT MUCH MORE ACCURATE

2470
01:30:29,857 --> 01:30:30,758
DIAGNOSTICS.

2471
01:30:30,758 --> 01:30:31,925
THIS IS SOMETHING EXTREMELY

2472
01:30:31,925 --> 01:30:34,661
SIMPLE TO DO, IT WAS A FRACTION,

2473
01:30:34,661 --> 01:30:36,463
THIRD GRADE MATH, NOT SOMETHING

2474
01:30:36,463 --> 01:30:39,266
WE'RE ABLE TO DO AT SCALE IN THE

2475
01:30:39,266 --> 01:30:40,234
HEALTH SYSTEM BECAUSE THE DATA

2476
01:30:40,234 --> 01:30:43,404
DON'T COME TO THE RIGHT PLACES.

2477
01:30:43,404 --> 01:30:44,972
I'LL GIVE AN EXAMPLE FROM DINNER

2478
01:30:44,972 --> 01:30:46,373
THE OTHER NIGHT.

2479
01:30:46,373 --> 01:30:51,412
A FAMILY, A CHILD WAS JUST BACK

2480
01:30:51,412 --> 01:30:54,481
FROM COSTA RICA, AND HAD SOME

2481
01:30:54,481 --> 01:30:57,751
DISCOMFORT IN THE CHEST.

2482
01:30:57,751 --> 01:30:59,386
CHEST X-RAY SHOWED NODULES.

2483
01:30:59,386 --> 01:31:08,262
THE DOCTOR, NOT A PEDIATRIC,

2484
01:31:08,262 --> 01:31:12,533
DOCTOR SAID METASTATIC SARCOMA

2485
01:31:12,533 --> 01:31:15,469
FROM A PRIMARY THAT WE HAVEN'T

2486
01:31:15,469 --> 01:31:17,004
YET IDENTIFIED, CAN GO THROUGH

2487
01:31:17,004 --> 01:31:20,307
THREE WEEKS OF TESTING, DID NOT

2488
01:31:20,307 --> 01:31:21,608
DO THE PRIOR PROBABILITY THING,

2489
01:31:21,608 --> 01:31:23,310
TAKING INTO ACCOUNT THAT THE

2490
01:31:23,310 --> 01:31:25,646
CHILD WAS JUST BACK FROM COSTA

2491
01:31:25,646 --> 01:31:29,283
RICA, AND IT WAS A TROPICAL

2492
01:31:29,283 --> 01:31:29,817
INFECTION.

2493
01:31:29,817 --> 01:31:33,320
SO, THE BACKGROUND IS INCREDIBLY

2494
01:31:33,320 --> 01:31:36,256
IMPORTANT, AND WE'RE FLAWED AS

2495
01:31:36,256 --> 01:31:38,025
CLINICIANS, I SPEAK BEING NO

2496
01:31:38,025 --> 01:31:39,026
DIFFERENT FROM OTHER CLINICIANS

2497
01:31:39,026 --> 01:31:40,794
IN THIS RESPECT, I DON'T SEE

2498
01:31:40,794 --> 01:31:42,696
PATIENTS ANYMORE BUT I DID, WE

2499
01:31:42,696 --> 01:31:46,800
CAN'T DO IT ALL IN OUR HEAD.

2500
01:31:46,800 --> 01:31:49,870
SO, I WROTE A PIECE IN JAMA

2501
01:31:49,870 --> 01:31:51,939
THAT'S CALLED THE EVOLUTION OF

2502
01:31:51,939 --> 01:31:54,575
PATIENT DIAGNOSIS FROM ART TO

2503
01:31:54,575 --> 01:31:55,375
DIGITAL DATA-DRIVEN SCIENCE.

2504
01:31:55,375 --> 01:32:01,582
THE IDEA THERE WAS THAT WE NEED

2505
01:32:01,582 --> 01:32:04,685
TO USE DATA FROM LARGE NUMBERS

2506
01:32:04,685 --> 01:32:06,286
OF PATIENTS LIKE GOOGLE WITH THE

2507
01:32:06,286 --> 01:32:08,155
RETINAL PHOTOGRAPHS AS ONE

2508
01:32:08,155 --> 01:32:11,758
EXAMPLE TO TAKE CARE OF EVEN ONE

2509
01:32:11,758 --> 01:32:12,526
PATIENT.

2510
01:32:12,526 --> 01:32:14,728
A MILLION SCANS LETS US TAKE

2511
01:32:14,728 --> 01:32:17,097
CARE OF ONE PATIENT, MUCH MORE

2512
01:32:17,097 --> 01:32:18,432
ACCURATELY AND POTENTIALLY MUCH

2513
01:32:18,432 --> 01:32:19,132
MORE EFFICIENTLY.

2514
01:32:19,132 --> 01:32:21,301
IN ORDER TO DO THIS WE NEED A

2515
01:32:21,301 --> 01:32:24,137
COMPACT WITH OUR PATIENTS, I

2516
01:32:24,137 --> 01:32:26,206
BELIEVE, SO THEY UNDERSTAND THAT

2517
01:32:26,206 --> 01:32:28,141
THEIR DATA ARE BEING USED ON

2518
01:32:28,141 --> 01:32:30,677
THEIR BEHALF AND ON THE BEHALF

2519
01:32:30,677 --> 01:32:32,112
OF OTHER PATIENTS, AND THAT THEY

2520
01:32:32,112 --> 01:32:35,616
ONLY WANT TO BE TREATED IN

2521
01:32:35,616 --> 01:32:36,850
HEALTHCARE SYSTEMS WHERE DATA

2522
01:32:36,850 --> 01:32:38,452
ARE BEING USED THIS WAY.

2523
01:32:38,452 --> 01:32:41,455
I THINK IT WILL AT SOME POINT IN

2524
01:32:41,455 --> 01:32:43,724
THE NOT TOO DISTANT FUTURE

2525
01:32:43,724 --> 01:32:46,727
BECOME AN ABSOLUTE EXPECTATION

2526
01:32:46,727 --> 01:32:49,029
THAT DIAGNOSTIC PROCESSES WILL

2527
01:32:49,029 --> 01:32:51,198
USE LARGE SCALE DATA.

2528
01:32:51,198 --> 01:32:53,400
NOW, LET'S THINK FOR A MOMENT

2529
01:32:53,400 --> 01:32:56,270
WHY DOESN'T THAT HAPPEN NOW?

2530
01:32:56,270 --> 01:32:58,238
ARE KEN AND SEAN THE ONLY TWO

2531
01:32:58,238 --> 01:32:59,873
PEOPLE WHO THOUGHT OF THIS?

2532
01:32:59,873 --> 01:33:00,073
NO.

2533
01:33:00,073 --> 01:33:02,042
PEOPLE KNOW THAT THIS NEEDS TO

2534
01:33:02,042 --> 01:33:04,011
HAPPEN, BUT IT'S HARD.

2535
01:33:04,011 --> 01:33:06,547
IT'S HARD TO GET DATA TO COMBINE

2536
01:33:06,547 --> 01:33:07,748
ACROSS SITES OF CARE.

2537
01:33:07,748 --> 01:33:09,917
IT'S VERY HARD TO GET DATA BEING

2538
01:33:09,917 --> 01:33:12,553
IN THE RIGHT PLACE AT THE RIGHT

2539
01:33:12,553 --> 01:33:12,753
TIME.

2540
01:33:12,753 --> 01:33:14,621
AND IT'S VERY HARD TO GET

2541
01:33:14,621 --> 01:33:15,956
CLINICIANS WITHIN A HOSPITAL TO

2542
01:33:15,956 --> 01:33:17,591
SHARE DATA WITH EACH OTHER, IT'S

2543
01:33:17,591 --> 01:33:20,961
VERY HARD TO GET HOSPITALS AND

2544
01:33:20,961 --> 01:33:23,263
PRACTICES TO SHARE DATA MORE

2545
01:33:23,263 --> 01:33:23,497
WIDELY.

2546
01:33:23,497 --> 01:33:26,366
SO, LET ME GIVE YOU A COUPLE

2547
01:33:26,366 --> 01:33:29,970
EXAMPLES OF HOW I THINK THIS

2548
01:33:29,970 --> 01:33:33,874
BEGINS TO -- IS BEGINNING TO

2549
01:33:33,874 --> 01:33:35,976
UNFOLD, IN POSITIVE AND

2550
01:33:35,976 --> 01:33:40,013
FORWARD-LOOKING WAYS.

2551
01:33:40,013 --> 01:33:46,253
SO WHEN THE STIMULUS PACKAGE

2552
01:33:46,253 --> 01:33:49,323
AFTER THE 2008 RECESSION WAS

2553
01:33:49,323 --> 01:33:50,824
PASSED, ONE PIECE OF THAT WAS

2554
01:33:50,824 --> 01:33:52,626
SOMETHING CALLED THE HIGH TECH

2555
01:33:52,626 --> 01:33:53,594
ACT.

2556
01:33:53,594 --> 01:33:57,197
AND THE HIGH TECH ACT GAVE A LOT

2557
01:33:57,197 --> 01:34:00,934
OF MONEY TO A LITTLE KNOWN

2558
01:34:00,934 --> 01:34:02,336
GOVERNMENT AGENCY CALLED THE

2559
01:34:02,336 --> 01:34:04,004
OFFICE OF THE NATIONAL

2560
01:34:04,004 --> 01:34:04,871
COORDINATOR OF HEALTH

2561
01:34:04,871 --> 01:34:05,505
INFORMATION TECHNOLOGY, VERY

2562
01:34:05,505 --> 01:34:08,141
WELL KNOWN TO SOME OF US BUT

2563
01:34:08,141 --> 01:34:12,279
LESS WIDELY KNOWN TO SOME OTHER

2564
01:34:12,279 --> 01:34:13,614
GOVERNMENT AGENCIES, GAVE $48

2565
01:34:13,614 --> 01:34:17,217
BILLION TO THIS AGENCY TO

2566
01:34:17,217 --> 01:34:17,985
PROMOTE ADOPTION OF ELECTRONIC

2567
01:34:17,985 --> 01:34:19,419
MEDICAL RECORDS.

2568
01:34:19,419 --> 01:34:23,790
I WROTE A PIECE IN THE JOURNAL

2569
01:34:23,790 --> 01:34:28,061
AT THE TIME WITH ZAK COHINIK,

2570
01:34:28,061 --> 01:34:29,696
PROPOSED IF YOU'RE GOING TO

2571
01:34:29,696 --> 01:34:30,797
PROMOTE ALLS OF ELECTRONIC

2572
01:34:30,797 --> 01:34:33,867
MEDICAL RECORDS YOU SHOULD DO

2573
01:34:33,867 --> 01:34:36,236
WHAT STEVE JOBS HAD DONE WITH

2574
01:34:36,236 --> 01:34:37,804
THE iPHONE, JUST A YEAR

2575
01:34:37,804 --> 01:34:39,172
BEFORE, WHICH WAS TO CREATE AN

2576
01:34:39,172 --> 01:34:40,240
APP STORE.

2577
01:34:40,240 --> 01:34:42,542
HOW DID STEVE JOBS CREATE AN APP

2578
01:34:42,542 --> 01:34:43,310
STORE?

2579
01:34:43,310 --> 01:34:47,214
HE CREATED AN APP STORE BY USING

2580
01:34:47,214 --> 01:34:48,982
SOMETHING CALLED AN APPLICATION

2581
01:34:48,982 --> 01:34:51,518
PROGRAMMING INTERFACE, API.

2582
01:34:51,518 --> 01:34:54,688
THE API MEANS THAT YOU CAN

2583
01:34:54,688 --> 01:34:58,191
CONNECT APPS TO THE iPHONE,

2584
01:34:58,191 --> 01:34:59,192
EVERYONE'S DONE THIS, YOU ALL

2585
01:34:59,192 --> 01:35:00,927
KNOW HOW TO DO THIS, BUT THE

2586
01:35:00,927 --> 01:35:02,896
REASON IT'S SO EASY TO DO IS

2587
01:35:02,896 --> 01:35:05,732
BECAUSE THERE'S A PROGRAMMING

2588
01:35:05,732 --> 01:35:06,867
INTERFACE, AN API, THAT MEANS

2589
01:35:06,867 --> 01:35:11,304
THE DEVELOPER OF THE APP, GOOGLE

2590
01:35:11,304 --> 01:35:15,842
MAPS OR SOMETHING ELSE, DO THE

2591
01:35:15,842 --> 01:35:24,151
NOT NEED TO MEET WITH STEVE

2592
01:35:24,151 --> 01:35:24,918
JOBS.

2593
01:35:24,918 --> 01:35:27,120
THEY USE THE API, THE APP CAN

2594
01:35:27,120 --> 01:35:29,289
ASK FOR CONTACTS FROM THE PHONE,

2595
01:35:29,289 --> 01:35:31,391
CAN ASK FOR OTHER THINGS, FROM

2596
01:35:31,391 --> 01:35:34,461
THE PHONE, THAT MIGHT BE USEFUL,

2597
01:35:34,461 --> 01:35:38,965
FOR THAT APP TO WORK.

2598
01:35:38,965 --> 01:35:41,368
GPS COORDINATES, LATITUDE AND

2599
01:35:41,368 --> 01:35:42,369
LONGITUDE, ACCELEROMETER, THINGS

2600
01:35:42,369 --> 01:35:43,570
LIKE THAT.

2601
01:35:43,570 --> 01:35:45,839
SO THE API LETS THE APP GET DATA

2602
01:35:45,839 --> 01:35:46,540
FROM THE PHONE.

2603
01:35:46,540 --> 01:35:48,975
WE PROPOSE THERE SHOULD BE AN

2604
01:35:48,975 --> 01:35:51,511
API IN HEALTHCARE RECORDS SO AN

2605
01:35:51,511 --> 01:35:52,345
INNOVATOR COULD GET TO THE POINT

2606
01:35:52,345 --> 01:35:55,682
OF CARE SO THAT AN INNOVATOR

2607
01:35:55,682 --> 01:35:57,551
COULD CREATE AN APP, CONNECT IT

2608
01:35:57,551 --> 01:35:59,619
TO AN ELECTRONIC HEALTH RECORD,

2609
01:35:59,619 --> 01:36:00,854
VERY EASILY.

2610
01:36:00,854 --> 01:36:04,791
ALSO SO A CLINICIAN USING AN APP

2611
01:36:04,791 --> 01:36:06,860
COULD HAVE A DIFFERENT INTERFACE

2612
01:36:06,860 --> 01:36:08,361
FOR THE ELECTRONIC MEDICAL

2613
01:36:08,361 --> 01:36:13,667
RECORDS SO AN OBSTETRICIAN AND

2614
01:36:13,667 --> 01:36:15,202
PEDIATRICS COULD HAVE TWO VIEWS,

2615
01:36:15,202 --> 01:36:19,473
NEEDING A DIFFERENT SET OF

2616
01:36:19,473 --> 01:36:19,773
INFORMATION.

2617
01:36:19,773 --> 01:36:21,942
OBSTETRICIAN HAS A MOTHER TO BE,

2618
01:36:21,942 --> 01:36:24,711
AND AN EMBRYO TO TAKE CARE OF,

2619
01:36:24,711 --> 01:36:26,246
AND DATA ON BOTH.

2620
01:36:26,246 --> 01:36:28,749
AND PEDIATRICIAN HAS A DIFFERENT

2621
01:36:28,749 --> 01:36:32,385
SET OF CRITERIA, AND A

2622
01:36:32,385 --> 01:36:32,953
DERMATOLOGIST ANOTHER SET,

2623
01:36:32,953 --> 01:36:34,788
NEUROLOGIST ANOTHER SET.

2624
01:36:34,788 --> 01:36:37,824
THE IDEA HERE IS THAT WITH APPS

2625
01:36:37,824 --> 01:36:40,560
THAT CONNECT TO THE ELECTRONIC

2626
01:36:40,560 --> 01:36:43,196
HEALTH RECORD THROUGH AN API YOU

2627
01:36:43,196 --> 01:36:46,700
CAN FIRST OF ALL HAVE RAPID

2628
01:36:46,700 --> 01:36:47,267
DEPLOYMENT OF INNOVATIONS,

2629
01:36:47,267 --> 01:36:51,671
SECOND OF ALL YOU CAN HAVE

2630
01:36:51,671 --> 01:36:55,075
DIFFERENT EXPERIENCES FOR

2631
01:36:55,075 --> 01:36:56,510
DIFFERENT CLINICIANS, AND THAT'S

2632
01:36:56,510 --> 01:36:58,912
FOR ONE PATIENT AT A TIME.

2633
01:36:58,912 --> 01:37:03,483
AND IN ONE PATIENT AT A TIME API

2634
01:37:03,483 --> 01:37:05,485
WE CREATED SMART ON FIRE, LONG

2635
01:37:05,485 --> 01:37:06,686
STORY, BUT WE ACTUALLY WERE

2636
01:37:06,686 --> 01:37:09,222
FUNDED TO DO THIS.

2637
01:37:09,222 --> 01:37:11,091
WE DID IT.

2638
01:37:11,091 --> 01:37:18,865
WE EVEN GOT IT INTO SOME OF A

2639
01:37:18,865 --> 01:37:19,499
REGULATORY REGIME THROUGH THE

2640
01:37:19,499 --> 01:37:22,135
21ST CENTURY CURES ACT.

2641
01:37:22,135 --> 01:37:24,638
SMART ON FIRE, THIS API, LETS

2642
01:37:24,638 --> 01:37:28,942
YOU CONNECT APPS TO THE HEALTH

2643
01:37:28,942 --> 01:37:31,011
RECORD IS AIMED -- IS IN THE

2644
01:37:31,011 --> 01:37:35,081
21ST CENTURY CURES ACT AND THE

2645
01:37:35,081 --> 01:37:39,252
RULE SUPPORTING IT, CALLED CURES

2646
01:37:39,252 --> 01:37:40,253
ACT RULE.

2647
01:37:40,253 --> 01:37:41,321
ANY ELECTRONIC HEALTH RECORD IN

2648
01:37:41,321 --> 01:37:43,089
THE COUNTRY YOU CAN CONNECT AN

2649
01:37:43,089 --> 01:37:45,058
APP TO A PATIENT, CAN CONNECT AN

2650
01:37:45,058 --> 01:37:45,959
APP TO.

2651
01:37:45,959 --> 01:37:47,794
WHO DID THIS FIRST?

2652
01:37:47,794 --> 01:37:49,763
IRONICALLY WE MENTIONED THEM IN

2653
01:37:49,763 --> 01:37:52,399
OUR NEW ENGLAND JOURNAL PIECE

2654
01:37:52,399 --> 01:37:53,700
BUT IRONICALLY APPLE DID THIS

2655
01:37:53,700 --> 01:37:54,901
FIRST.

2656
01:37:54,901 --> 01:37:56,436
THEY WERE NOT ONLY THERE WITH

2657
01:37:56,436 --> 01:37:59,272
THEIR OWN API BUT WERE THE FIRST

2658
01:37:59,272 --> 01:38:02,008
USERS OF OUR API, AND THEY TOOK

2659
01:38:02,008 --> 01:38:05,645
THE HEALTH APP IN THE APPLE --

2660
01:38:05,645 --> 01:38:08,515
ON THE APPLE PHONE, THE WHITE

2661
01:38:08,515 --> 01:38:11,685
HEART WITH THE -- WHITE SQUARE

2662
01:38:11,685 --> 01:38:13,653
WITH RED HEART AND CONNECTED

2663
01:38:13,653 --> 01:38:16,056
HEALTH APP TO ALL ELECTRONIC

2664
01:38:16,056 --> 01:38:17,791
HEALTH RECORDS, SO THAT ANY

2665
01:38:17,791 --> 01:38:19,326
PATIENT CAN DOWNLOAD THEIR DATA

2666
01:38:19,326 --> 01:38:23,964
ONTO THEIR PHONE AND SHARE IT.

2667
01:38:23,964 --> 01:38:28,435
AND AMAZINGLY, THIS PHONE, THIS

2668
01:38:28,435 --> 01:38:31,304
DOWNLOAD, INCLUDES THE NOTES, IT

2669
01:38:31,304 --> 01:38:32,939
INCLUDES THE UNSTRUCTURED DATA.

2670
01:38:32,939 --> 01:38:35,575
AND AT THIS MOMENT IN TIME, FOR

2671
01:38:35,575 --> 01:38:38,812
PATIENTS TO BE ABLE TO GET FULL

2672
01:38:38,812 --> 01:38:40,046
ACCESS TO THEIR ELECTRONIC

2673
01:38:40,046 --> 01:38:42,782
HEALTH RECORD INFORMATION,

2674
01:38:42,782 --> 01:38:44,417
INCLUDING THE CLINICIAN NOTES,

2675
01:38:44,417 --> 01:38:46,620
ACROSS AN API FROM ANY

2676
01:38:46,620 --> 01:38:47,721
ELECTRONIC MEDICAL RECORD AND BY

2677
01:38:47,721 --> 01:38:49,256
THE WAY ALSO FROM ALL THE

2678
01:38:49,256 --> 01:38:52,225
DIFFERENT SITES OF CARE WHERE

2679
01:38:52,225 --> 01:38:54,628
THEY MAY GO, THEIR COMMUNITY

2680
01:38:54,628 --> 01:38:55,929
HOSPITAL, TERTIARY CARE

2681
01:38:55,929 --> 01:38:57,597
HOSPITAL, PRIMARY PRACTICE,

2682
01:38:57,597 --> 01:38:58,698
THEIR SPECIALIST PRACTICE, THEY

2683
01:38:58,698 --> 01:39:01,668
CAN GET THESE DATA FROM ALL OF

2684
01:39:01,668 --> 01:39:03,336
THOSE SITES AND ACTUALLY CREATE

2685
01:39:03,336 --> 01:39:04,838
A UNIFIED MEDICAL RECORD FOR

2686
01:39:04,838 --> 01:39:07,474
THEMSELVES, SHARE IT WITH THEIR

2687
01:39:07,474 --> 01:39:09,876
CLINICIANS, SHARE IT WITH

2688
01:39:09,876 --> 01:39:10,844
RESEARCHERS, SHARE WITH NIH

2689
01:39:10,844 --> 01:39:11,411
STUDIES.

2690
01:39:11,411 --> 01:39:15,148
THEY CAN SHARE IT WITH

2691
01:39:15,148 --> 01:39:16,016
CARETAKERS.

2692
01:39:16,016 --> 01:39:16,816
BUT POTENTIALLY MOST IMPORTANTLY

2693
01:39:16,816 --> 01:39:18,952
TODAY THEY CAN SHARE IT WITH

2694
01:39:18,952 --> 01:39:19,286
A.I.

2695
01:39:19,286 --> 01:39:22,355
AND IF THEY CAN SHARE IT WITH

2696
01:39:22,355 --> 01:39:24,858
RESPONSIBLE A.I., OR THEY CAN

2697
01:39:24,858 --> 01:39:25,592
JUST TAKE RESPONSIBILITY ON

2698
01:39:25,592 --> 01:39:28,028
THEMSELVES AND THEY CAN SHARE IT

2699
01:39:28,028 --> 01:39:31,631
WITH ChatGPT ON THEIR PHONE,

2700
01:39:31,631 --> 01:39:35,669
AND ALL OF A SUDDEN THEY'VE GOT

2701
01:39:35,669 --> 01:39:38,672
AN A.I. COMPANION WHO HAS ACCESS

2702
01:39:38,672 --> 01:39:41,574
TO THEIR FULL ELECTRONIC HEALTH

2703
01:39:41,574 --> 01:39:43,243
RECORD INFORMATION, THIS IS PART

2704
01:39:43,243 --> 01:39:48,949
OF THE BEGINNING OF A VERY

2705
01:39:48,949 --> 01:39:50,483
INTERESTING DIRECT-TO-CONSUMER

2706
01:39:50,483 --> 01:39:51,685
HEALTHCARE ECOSYSTEM THAT'S

2707
01:39:51,685 --> 01:39:52,319
EMERGING.

2708
01:39:52,319 --> 01:39:55,088
LET ME TELL YOU ABOUT ANOTHER

2709
01:39:55,088 --> 01:39:57,590
ASPECT OF THIS API.

2710
01:39:57,590 --> 01:40:00,460
WE HAVE A SECOND API, WHICH LETS

2711
01:40:00,460 --> 01:40:01,194
YOU GET POPULATION DATA OUT OF

2712
01:40:01,194 --> 01:40:03,396
THE ELECTRONIC HEALTH RECORD.

2713
01:40:03,396 --> 01:40:07,767
AND THE API THAT LET'S YOU GET

2714
01:40:07,767 --> 01:40:09,302
HEALTH -- POPULATION LEVEL OUT

2715
01:40:09,302 --> 01:40:13,039
OF A HEALTH RECORD ALSO IN THE

2716
01:40:13,039 --> 01:40:14,574
SAME FORMAT, FORMAT CALLED FHIR,

2717
01:40:14,574 --> 01:40:17,978
IT'S A STANDARD DATA FORMAT,

2718
01:40:17,978 --> 01:40:19,512
THAT LETS THIRD PARTIES AND

2719
01:40:19,512 --> 01:40:21,781
THIRD PARTIES AND WE'VE

2720
01:40:21,781 --> 01:40:23,116
DEMONSTRATED THIS, INCLUDE, FOR

2721
01:40:23,116 --> 01:40:24,651
EXAMPLE, CENTERS FOR DISEASE

2722
01:40:24,651 --> 01:40:26,720
CONTROL, WE'RE TALKING TO THE

2723
01:40:26,720 --> 01:40:29,055
FDA, AND WE'RE PART OF SOMETHING

2724
01:40:29,055 --> 01:40:30,991
CALLED THE ARPA-H BIOMEDICAL

2725
01:40:30,991 --> 01:40:32,125
DATA FABRIC, WHERE WE'RE

2726
01:40:32,125 --> 01:40:34,327
CONNECTING HEALTH CARE SYSTEM TO

2727
01:40:34,327 --> 01:40:37,163
RESEARCH ENTERPRISE WITH THE CDC

2728
01:40:37,163 --> 01:40:38,465
WE WERE CONNECTING HEALTHCARE

2729
01:40:38,465 --> 01:40:39,799
ECOSYSTEM TO PUBLIC HEALTH

2730
01:40:39,799 --> 01:40:43,970
ENTERPRISE, AND WITH THE FDA TO

2731
01:40:43,970 --> 01:40:44,504
SURVEILLANCE, POST-MARKET

2732
01:40:44,504 --> 01:40:45,038
SURVEILLANCE ENTERPRISE.

2733
01:40:45,038 --> 01:40:47,374
BUT WITH THE VERY SAME DATA

2734
01:40:47,374 --> 01:40:50,777
COMING OUT IN A STANDARDIZED WAY

2735
01:40:50,777 --> 01:40:51,745
ANYWHERE IN THE HEALTHCARE

2736
01:40:51,745 --> 01:40:53,813
SYSTEM AND THIS IS FOR THE CIO

2737
01:40:53,813 --> 01:40:55,915
TO BE ABLE TO EASILY GET THESE

2738
01:40:55,915 --> 01:40:57,117
DATA OUT.

2739
01:40:57,117 --> 01:40:59,853
IF YOU'VE EVER DRIED TO GET DATA

2740
01:40:59,853 --> 01:41:02,355
OUT, YOU MIGHT KNOW IT'S

2741
01:41:02,355 --> 01:41:03,623
COMPLICATED AND NOT NECESSARILY

2742
01:41:03,623 --> 01:41:06,926
SHAREABLE IN THE SAME FORMAT IN

2743
01:41:06,926 --> 01:41:07,827
TWO DIFFERENT SITES.

2744
01:41:07,827 --> 01:41:10,997
THIS IS A STANDARD FORMAT, ONE

2745
01:41:10,997 --> 01:41:12,332
ANALYTIC PROCESS CAN RUN

2746
01:41:12,332 --> 01:41:14,067
ANYWHERE IN THE HEALTHCARE

2747
01:41:14,067 --> 01:41:14,300
SYSTEM.

2748
01:41:14,300 --> 01:41:19,639
SO VERY INTERESTING THINGS

2749
01:41:19,639 --> 01:41:20,540
HAPPENING. 

2750
01:41:20,540 --> 01:41:24,377
THIS IS A PARTICULARLY OPPORTUNE

2751
01:41:24,377 --> 01:41:26,813
MOMENT TO DISCUSS THESE

2752
01:41:26,813 --> 01:41:27,614
TECHNOLOGIES.

2753
01:41:27,614 --> 01:41:35,355
I WAS UNEXPECTED AT A HIGH LEVEL

2754
01:41:35,355 --> 01:41:37,857
WITH A BUNCH OF NERDS AROUND A

2755
01:41:37,857 --> 01:41:39,626
TABLE AT HHS HEADQUARTERS LAST

2756
01:41:39,626 --> 01:41:41,494
WEEK, THEY INVITED PEOPLE TO

2757
01:41:41,494 --> 01:41:45,198
DISCUSS ISSUES RELATED TO A CMS

2758
01:41:45,198 --> 01:41:47,067
AND ALSO THIS NATIONAL

2759
01:41:47,067 --> 01:41:48,601
COORDINATOR OF HEALTH

2760
01:41:48,601 --> 01:41:51,671
INFORMATION TECHNOLOGY REQUEST

2761
01:41:51,671 --> 01:41:56,609
FOR INFORMATION ABOUT THESE VERY

2762
01:41:56,609 --> 01:41:59,679
APIs, SMART ON FHIR, AND CLEAR

2763
01:41:59,679 --> 01:42:02,082
TO ME THE ADMINISTRATION IS VERY

2764
01:42:02,082 --> 01:42:04,717
MUCH PLANNING TO USE THESE

2765
01:42:04,717 --> 01:42:07,120
APIs TO MOVE HEALTH DATA

2766
01:42:07,120 --> 01:42:09,522
AROUND THE SYSTEM, INCLUDING

2767
01:42:09,522 --> 01:42:11,825
DIRECTLY TO PATIENTS, TO EMPOWER

2768
01:42:11,825 --> 01:42:14,561
PATIENTS WITH THEIR OWN

2769
01:42:14,561 --> 01:42:17,597
INFORMATION.

2770
01:42:17,597 --> 01:42:20,166
AND IN SOME WAYS, THERE IS ALSO,

2771
01:42:20,166 --> 01:42:24,204
AS FOLKS MAY KNOW, THIS

2772
01:42:24,204 --> 01:42:25,638
ADMINISTRATION HAS A

2773
01:42:25,638 --> 01:42:29,909
DEREGULATORY STANCE, AND I AND

2774
01:42:29,909 --> 01:42:31,411
OTHERS HAVE CALLED FOR IF THERE

2775
01:42:31,411 --> 01:42:34,080
IS GOING TO BE DEREGULATION IN

2776
01:42:34,080 --> 01:42:37,050
THE HEALTHCARE SPACE, WE THINK

2777
01:42:37,050 --> 01:42:41,588
THAT REGULATING INSTEAD OF EHR

2778
01:42:41,588 --> 01:42:43,022
VARIOUS EHR FUNCTIONALITIES,

2779
01:42:43,022 --> 01:42:44,324
JUST KEEPING WITH THESE

2780
01:42:44,324 --> 01:42:45,425
REGULATIONS, MAKING SURE DATA

2781
01:42:45,425 --> 01:42:48,928
CAN GO IN AND OUT OF ELECTRONIC

2782
01:42:48,928 --> 01:42:52,565
MEDICAL RECORDS, STANDARDIZED

2783
01:42:52,565 --> 01:42:53,333
FORMATS, REGULAR

2784
01:42:53,333 --> 01:42:54,434
INTEROPERABILITY INSTEAD OF USER

2785
01:42:54,434 --> 01:42:55,869
INTERFACE AND THINGS ON A

2786
01:42:55,869 --> 01:42:58,371
ELECTRONIC HEALTH RECORD, MIGHT

2787
01:42:58,371 --> 01:43:02,675
BE A MOMENT WHERE WE SEE

2788
01:43:02,675 --> 01:43:04,511
ACTUALLY A DEREGULATORY ACTION

2789
01:43:04,511 --> 01:43:06,913
THAT IMPROVES THE USE OF

2790
01:43:06,913 --> 01:43:09,682
ELECTRONIC HEALTH RECORD DATA

2791
01:43:09,682 --> 01:43:16,990
FOR MANY OF THE NICHD

2792
01:43:16,990 --> 01:43:17,290
OBJECTIVES.

2793
01:43:17,290 --> 01:43:18,525
IT'S TURNED OUT THAT'S -- THAT

2794
01:43:18,525 --> 01:43:20,260
THIS KIND OF INTERFACE WHERE YOU

2795
01:43:20,260 --> 01:43:22,695
CAN GET DATA OUT, MOFFITT

2796
01:43:22,695 --> 01:43:26,733
AROUND, SHARE IT, THAT'S ONE

2797
01:43:26,733 --> 01:43:28,501
PART OF INTEROPERABILITY.

2798
01:43:28,501 --> 01:43:30,803
ANOTHER PART IS SOMETHING I'VE

2799
01:43:30,803 --> 01:43:32,438
BEEN EXPLORING AND WITH SOME

2800
01:43:32,438 --> 01:43:35,175
SUCCESS IN A NETWORK OF

2801
01:43:35,175 --> 01:43:36,809
CHILDREN'S HOSPITALS WE HAVE SIX

2802
01:43:36,809 --> 01:43:40,413
AND SOON SEVEN CHILDREN'S

2803
01:43:40,413 --> 01:43:43,383
HOSPITALS, WHO ARE USING

2804
01:43:43,383 --> 01:43:45,451
INTEROPERABLE DATA, WHERE WE

2805
01:43:45,451 --> 01:43:47,187
HAVE -- IN A FEDERATED NETWORK.

2806
01:43:47,187 --> 01:43:49,155
AND THIS COMPARED TO A

2807
01:43:49,155 --> 01:43:50,256
CENTRALIZED NETWORK WHERE ALL

2808
01:43:50,256 --> 01:43:53,760
THE DATA ARE STORED IN ONE

2809
01:43:53,760 --> 01:43:58,264
DATABASE, IN A FEDERATED NETWORK

2810
01:43:58,264 --> 01:43:59,999
EACH SITE INSTALLED A LITTLE BIT

2811
01:43:59,999 --> 01:44:03,403
OF SOFTWARE AND KEEPS ALL THEIR

2812
01:44:03,403 --> 01:44:05,805
DATA ELECTRONIC HEALTH RECORD

2813
01:44:05,805 --> 01:44:07,240
DATA, CONSENTED GENOMIC DATA,

2814
01:44:07,240 --> 01:44:12,278
OTHER TYPES OF OMICS DATA, SOON

2815
01:44:12,278 --> 01:44:14,681
EXPOSOME DATA, ALL LOCALLY, ALL

2816
01:44:14,681 --> 01:44:19,085
HAPPENS LOCALLY.

2817
01:44:19,085 --> 01:44:20,720
A.I. PROCESSING NOTES,

2818
01:44:20,720 --> 01:44:21,588
EXTRACTING ADDITIONAL

2819
01:44:21,588 --> 01:44:23,156
INFORMATION ALL LOCALLY BUT WE

2820
01:44:23,156 --> 01:44:25,458
CAN QUERY ACROSS ALL THOSE SITES

2821
01:44:25,458 --> 01:44:28,194
AND SEE WHERE INTERESTING

2822
01:44:28,194 --> 01:44:31,998
PATIENTS ARE AND BRING DOWN

2823
01:44:31,998 --> 01:44:35,134
PARTICULAR COHORTS OF DATA ON

2824
01:44:35,134 --> 01:44:36,469
CONSENTED PATIENTS, FOR EXAMPLE,

2825
01:44:36,469 --> 01:44:40,907
AND ALSO WITH ELECTRONIC HEALTH

2826
01:44:40,907 --> 01:44:43,509
RECORD DATA, THROUGH WAIVERS OF

2827
01:44:43,509 --> 01:44:45,378
CONSENT, LARGE POPULATION DATA

2828
01:44:45,378 --> 01:44:48,648
IN STANDARDIZED FORMAT WE CAN

2829
01:44:48,648 --> 01:44:52,051
SHARE FOR PURPOSES OF RESEARCH.

2830
01:44:52,051 --> 01:44:57,023
AND WE'VE EXPLORED OTHER TYPES

2831
01:44:57,023 --> 01:45:01,194
OF INTEROPERABILITY IN THIS

2832
01:45:01,194 --> 01:45:03,496
NETWORK SO WE HAVE COMMON

2833
01:45:03,496 --> 01:45:07,967
APPROACHES TO CONSENT, 145,000

2834
01:45:07,967 --> 01:45:10,336
CONSENTED PATIENT SO FAR, COMMON

2835
01:45:10,336 --> 01:45:12,338
APPROACH TO ELECTRONIC HEALTH

2836
01:45:12,338 --> 01:45:13,973
RECORD DATA STORAGE ACROSS 16

2837
01:45:13,973 --> 01:45:17,043
MILLION PATIENTS' RECORDS,

2838
01:45:17,043 --> 01:45:20,647
COMMON APPROACHES TO

2839
01:45:20,647 --> 01:45:22,949
REPRESENTING GENOMIC DATA ACROSS

2840
01:45:22,949 --> 01:45:27,320
ABOUT, SO FAR, 40,000, SOON TO

2841
01:45:27,320 --> 01:45:28,988
BE MORE LIKE 100,000 GENOMES.

2842
01:45:28,988 --> 01:45:33,226
MY DEPARTMENT CHAIR ASKED ME

2843
01:45:33,226 --> 01:45:36,195
RECENTLY CAN WE PARTICIPATE AS A

2844
01:45:36,195 --> 01:45:43,303
SITE IN A GENE THERAPY TRIAL FOR

2845
01:45:43,303 --> 01:45:45,071
PITT-HOPKINS SYNDROME, A TCF 4

2846
01:45:45,071 --> 01:45:55,615
GENE MUTATION, A RARE NEUROLOGIC

2847
01:45:56,849 --> 01:45:57,050
DISORDER.

2848
01:45:57,050 --> 01:46:02,922
USING QUERIES WE WERE ABLE TO

2849
01:46:02,922 --> 01:46:04,991
IDENTIFY SCORES OF PATIENTS WITH

2850
01:46:04,991 --> 01:46:06,225
THIS EXCEPTIONALLY RARE DISEASE

2851
01:46:06,225 --> 01:46:09,228
WHO NOW HAVE THE BENEFIT OF

2852
01:46:09,228 --> 01:46:11,130
BEING OFFERED CLINICAL TRIALS.

2853
01:46:11,130 --> 01:46:14,867
SO WE SEE THE BENEFITS OF THIS

2854
01:46:14,867 --> 01:46:16,936
KIND OF APPROACH EMERGING VERY

2855
01:46:16,936 --> 01:46:19,839
QUICKLY AND THAT'S JUST ONE

2856
01:46:19,839 --> 01:46:21,541
EXAMPLE OF THE TYPE OF WORK THAT

2857
01:46:21,541 --> 01:46:23,643
WE'RE ABLE TO DO IN A NETWORK.

2858
01:46:23,643 --> 01:46:26,045
I'LL GIVE ONE MORE EXAMPLE AND

2859
01:46:26,045 --> 01:46:28,081
I'LL PAUSE IN CASE THERE'S

2860
01:46:28,081 --> 01:46:30,917
DISCUSSION THAT WE MIGHT HAVE.

2861
01:46:30,917 --> 01:46:33,419
BUT ANOTHER EXAMPLE IS LOOKING

2862
01:46:33,419 --> 01:46:35,621
ACROSS THIS WHOLE NETWORK FOR

2863
01:46:35,621 --> 01:46:41,661
PATIENTS WHO ARE ON DIAGNOSTIC

2864
01:46:41,661 --> 01:46:43,930
ODYSSEYS, THAT ARE POTENTIALLY

2865
01:46:43,930 --> 01:46:45,465
DETECTABLE THROUGH CERTAIN TYPES

2866
01:46:45,465 --> 01:46:48,101
OF SIGNATURES IN THEIR

2867
01:46:48,101 --> 01:46:53,039
TRAJECTORIES, OR THEIR OMICS

2868
01:46:53,039 --> 01:46:55,775
DATA, OR CLUSTERS OF SYMPTOMS OR

2869
01:46:55,775 --> 01:46:56,642
LABORATORY FINDINGS.

2870
01:46:56,642 --> 01:46:59,479
WE'VE BEEN LOOKING PARTICULARLY

2871
01:46:59,479 --> 01:47:05,418
IN THIS SPACE OF RARE PULMONARY

2872
01:47:05,418 --> 01:47:09,589
DISEASE, FOR EXAMPLE UNDIAGNOSED

2873
01:47:09,589 --> 01:47:10,189
BRONCHIECCASIS, INTERSTITIAL

2874
01:47:10,189 --> 01:47:12,759
LUNG DISEASE, AND I'LL GIVE THE

2875
01:47:12,759 --> 01:47:18,631
LAST EXAMPLE WE'RE BEGINNING TO

2876
01:47:18,631 --> 01:47:20,066
WORK ON, HOW DO WE TAKE ALL

2877
01:47:20,066 --> 01:47:22,568
THOSE DATA THAT WE HAVE AND,

2878
01:47:22,568 --> 01:47:25,004
AGAIN, GO BACK TO THE

2879
01:47:25,004 --> 01:47:25,671
RELATIONSHIP BETWEEN POPULATION

2880
01:47:25,671 --> 01:47:28,508
DATA AND INDIVIDUALS, HOW DO WE

2881
01:47:28,508 --> 01:47:29,842
REFLECT THOSE DATA INTO

2882
01:47:29,842 --> 01:47:31,778
SOMETHING LIKE A CASE

2883
01:47:31,778 --> 01:47:33,413
CONFERENCE?

2884
01:47:33,413 --> 01:47:36,883
SORT OF LIKE A TUMOR BOARD BUT

2885
01:47:36,883 --> 01:47:40,253
COULD BE IN A PULMONARY DISEASE

2886
01:47:40,253 --> 01:47:41,387
CLINIC OR INFLAMMATORY BOWEL

2887
01:47:41,387 --> 01:47:43,122
DISEASE CLINIC, HOW DO WE

2888
01:47:43,122 --> 01:47:44,056
REFLECT LARGE AMOUNTS OF DATA

2889
01:47:44,056 --> 01:47:47,627
AND WITH THE USE OF OTHER TYPES

2890
01:47:47,627 --> 01:47:50,530
OF A.I. TO SUPPORT CASE

2891
01:47:50,530 --> 01:47:51,664
CONFERENCE, WITH A BUNCH OF US

2892
01:47:51,664 --> 01:47:52,965
SITTING AROUND A TABLE TRYING TO

2893
01:47:52,965 --> 01:47:54,033
HELP EACH OTHER WITH OUR

2894
01:47:54,033 --> 01:47:57,036
KNOWLEDGE AND KNOWLEDGE OF THE

2895
01:47:57,036 --> 01:47:58,571
LITERATURE AND EXPERIENCE WITH

2896
01:47:58,571 --> 01:48:01,274
PATIENTS, TO SORT OF DIRECT THE

2897
01:48:01,274 --> 01:48:04,243
NEXT SET OF THERAPEUTIC OPTIONS

2898
01:48:04,243 --> 01:48:05,678
FOR PATIENT OR SORT THROUGH

2899
01:48:05,678 --> 01:48:08,848
DIAGNOSIS, HOW DO WE DO THAT IN

2900
01:48:08,848 --> 01:48:09,949
A FULLY INFORMATICALLY SUPPORTED

2901
01:48:09,949 --> 01:48:10,383
WAY.

2902
01:48:10,383 --> 01:48:13,719
SO THESE ARE SOME THINGS ON THE

2903
01:48:13,719 --> 01:48:15,955
SORT OF CUTTING EDGE OF THE

2904
01:48:15,955 --> 01:48:18,591
THINGS THAT WE'RE TRYING TO DO.

2905
01:48:18,591 --> 01:48:22,628
BUT IT'S A VERY INTERESTING

2906
01:48:22,628 --> 01:48:23,496
MOMENT IN REGULATED

2907
01:48:23,496 --> 01:48:24,063
INTEROPERABILITY.

2908
01:48:24,063 --> 01:48:26,799
I'M GLAD THIS KIND OF -- THIS

2909
01:48:26,799 --> 01:48:29,068
SYNERGY WITH THE POLICY WORLD ON

2910
01:48:29,068 --> 01:48:33,139
THIS RIGHT NOW AND CURRENT HHS

2911
01:48:33,139 --> 01:48:35,141
MAKES IT A VERY GOOD TIME TO BE

2912
01:48:35,141 --> 01:48:38,711
ABLE TO HAVE THIS DISCUSSION AND

2913
01:48:38,711 --> 01:48:40,513
THIS OPEN SESSION OF THE NICHD

2914
01:48:40,513 --> 01:48:40,847
COUNCIL.

2915
01:48:40,847 --> 01:48:42,148
THANK YOU VERY MUCH.

2916
01:48:42,148 --> 01:48:47,386
AGAIN, THANK YOU FOR INVITING M.

2917
01:48:47,386 --> 01:48:48,488
>> THAT WAS TREMENDOUS.

2918
01:48:48,488 --> 01:48:51,324
I WILL SAY ALSO THE RIFFING NOT

2919
01:48:51,324 --> 01:48:53,059
ONLY FROM DR. MOONEY'S

2920
01:48:53,059 --> 01:48:54,494
PRESENTATION BUT ALSO THE

2921
01:48:54,494 --> 01:48:55,261
COUNCIL'S AWARE WE'VE WORKED A

2922
01:48:55,261 --> 01:48:57,997
LOT WITH THE OFFICE OF THE

2923
01:48:57,997 --> 01:49:00,066
NATIONAL COORDINATOR THROUGH THE

2924
01:49:00,066 --> 01:49:02,602
HHS PATIENT-CENTERED OUTCOMES

2925
01:49:02,602 --> 01:49:09,475
RESEARCH TRUST FUND, INCLUDING

2926
01:49:09,475 --> 01:49:15,181
THE LING FHIR, MOMS AND BABIES,

2927
01:49:15,181 --> 01:49:16,582
THE GUIDE, AND VALERIE COTTON

2928
01:49:16,582 --> 01:49:18,084
AND REBEKAH ROSEN WORKING ON

2929
01:49:18,084 --> 01:49:19,952
FHIR RESOURCES FOR SOME OF OUR

2930
01:49:19,952 --> 01:49:20,786
DATA ASSETS.

2931
01:49:20,786 --> 01:49:22,522
I THINK THIS IS SOMEWHERE WE'RE

2932
01:49:22,522 --> 01:49:25,024
MOVING AND HAVE BEEN MOVING FOR

2933
01:49:25,024 --> 01:49:26,559
QUITE SOME TIME AND WE MAY

2934
01:49:26,559 --> 01:49:28,094
ACTUALLY WANT TO FOLLOW UP WITH

2935
01:49:28,094 --> 01:49:30,496
YOU ON SOME DISCUSSIONS YOU'RE

2936
01:49:30,496 --> 01:49:31,297
HAVING.

2937
01:49:31,297 --> 01:49:33,699
WE MEET REGULARLY WITH CMS AND

2938
01:49:33,699 --> 01:49:33,866
ONC.

2939
01:49:33,866 --> 01:49:35,468
IT WOULD BE GOOD TO KNOW WHAT'S

2940
01:49:35,468 --> 01:49:37,436
BEING DISCUSSED SO WE CAN

2941
01:49:37,436 --> 01:49:38,971
ANTICIPATE THOSE CHANGES.

2942
01:49:38,971 --> 01:49:40,506
I WILL ALLOW ONE QUESTION.

2943
01:49:40,506 --> 01:49:45,978
WE'D  LIKE TO GIVE A TEN-MINUTE

2944
01:49:45,978 --> 01:49:47,313
BREAK, I DON'T WANT TO TOTALLY

2945
01:49:47,313 --> 01:49:49,081
CLOSE DOWN DISCUSSION BUT WANT

2946
01:49:49,081 --> 01:49:50,716
TO KEEP US SLIGHTLY ON SCHEDULE.

2947
01:49:50,716 --> 01:49:57,256
DOES ANYONE ON COUNCIL HAVE A

2948
01:49:57,256 --> 01:50:01,661
QUESTION FOR DR. MANDL?

2949
01:50:01,661 --> 01:50:02,795
SO, BONNIE, DR. MALDONADO?

2950
01:50:02,795 --> 01:50:05,498
>>  YEAH, THANK YOU SO
MUCH.

2951
01:50:05,498 --> 01:50:07,567
THIS IS REALLY EXCITING

2952
01:50:07,567 --> 01:50:07,900
PRESENTATION.

2953
01:50:07,900 --> 01:50:10,503
CAN YOU TALK JUST A BIT ABOUT

2954
01:50:10,503 --> 01:50:12,038
SECURITY, GIVEN THAT WE WORRY

2955
01:50:12,038 --> 01:50:15,641
ABOUT UPLOADING DATA THAT CAN BE

2956
01:50:15,641 --> 01:50:18,611
SHARED BROADLY AND ACCESSED FROM

2957
01:50:18,611 --> 01:50:20,746
OUTSIDE PARTIES TO PERSONALIZED

2958
01:50:20,746 --> 01:50:22,014
DATA, I'D LIKE TO HEAR A LITTLE

2959
01:50:22,014 --> 01:50:23,316
BIT MORE ABOUT THAT.

2960
01:50:23,316 --> 01:50:23,716
>> SURE.

2961
01:50:23,716 --> 01:50:25,384
IT'S A GREAT QUESTION.

2962
01:50:25,384 --> 01:50:28,120
A VERY COMMON QUESTION I GET

2963
01:50:28,120 --> 01:50:30,189
AFTER MY PRESENTATIONS.

2964
01:50:30,189 --> 01:50:33,059
SO, I'LL ANSWER IT SUCCINCTLY,

2965
01:50:33,059 --> 01:50:35,695
OF COURSE THERE'S MYRIAD ISSUES,

2966
01:50:35,695 --> 01:50:39,198
BUT LET ME ASSURE YOU THAT WHAT

2967
01:50:39,198 --> 01:50:43,569
WE'RE DOING PUTS PRIVACY AND

2968
01:50:43,569 --> 01:50:47,073
PATIENT CONTROL FIRST, IS NOT AN

2969
01:50:47,073 --> 01:50:48,507
AFTERTHOUGHT AND CERTAINLY NOT

2970
01:50:48,507 --> 01:50:50,009
SOMETHING THAT'S BEEN IGNORED.

2971
01:50:50,009 --> 01:50:51,877
IN THE ONE PATIENT AT A TIME,

2972
01:50:51,877 --> 01:50:53,713
FOR EXAMPLE, THE APPLE HEALTH

2973
01:50:53,713 --> 01:50:55,381
APP, ENABLING YOU TO DOWNLOAD

2974
01:50:55,381 --> 01:50:58,017
YOUR DATA TO YOUR PHONE, IF YOU

2975
01:50:58,017 --> 01:51:02,054
TAKE APPLE AS AN EXAMPLE, THEY

2976
01:51:02,054 --> 01:51:05,091
HAVE GONE PRIVACY FIRST TO AN

2977
01:51:05,091 --> 01:51:08,728
EXTREME DEGREE, IN A LAUDABLE

2978
01:51:08,728 --> 01:51:09,161
WAY.

2979
01:51:09,161 --> 01:51:10,696
DATA YOU DOWNLOAD TO YOUR PHONE

2980
01:51:10,696 --> 01:51:13,265
IS ONLY ON YOUR PERSONAL DEVICE,

2981
01:51:13,265 --> 01:51:16,502
WHICH HOPEFULLY YOU HAVE A

2982
01:51:16,502 --> 01:51:18,471
PASSWORD ON, PASSWORD

2983
01:51:18,471 --> 01:51:20,473
PROTECTION, AND IN YOUR PERSONAL

2984
01:51:20,473 --> 01:51:20,706
I-CLOUD.

2985
01:51:20,706 --> 01:51:22,041
APPLE CANNOT SEE IT.

2986
01:51:22,041 --> 01:51:24,810
NO ONE CAN SEE IT, UNTIL YOU

2987
01:51:24,810 --> 01:51:25,645
SHARE IT.

2988
01:51:25,645 --> 01:51:28,648
ONCE YOU -- IF YOU DO SHARE IT

2989
01:51:28,648 --> 01:51:30,383
WITH A THIRD PARTY, NOW JUST

2990
01:51:30,383 --> 01:51:34,453
LIKE EVERYTHING ELSE YOU SHARE

2991
01:51:34,453 --> 01:51:38,290
WITH A THIRD PARTY, THERE ARE

2992
01:51:38,290 --> 01:51:40,059
TERMS OF SERVICE THAT MAY OR MAY

2993
01:51:40,059 --> 01:51:41,694
NOT BE BENEFICIAL, THAT BECOMES

2994
01:51:41,694 --> 01:51:47,366
A FEDERAL TRADE COMMISSION

2995
01:51:47,366 --> 01:51:47,633
QUESTION.

2996
01:51:47,633 --> 01:51:51,737
IN THE POPULATION DATA SHARING,

2997
01:51:51,737 --> 01:51:54,507
THOSE DATA ARE ONLY BEING

2998
01:51:54,507 --> 01:51:58,544
ACCESSED ACROSS THIS API BY THE

2999
01:51:58,544 --> 01:51:59,879
SAME CHIEF INFORMATION OFFICERS,

3000
01:51:59,879 --> 01:52:02,181
ET CETERA, IN THE I.T.

3001
01:52:02,181 --> 01:52:02,682
DEPARTMENTS.

3002
01:52:02,682 --> 01:52:05,685
THEY ARE JUST ABLE TO DO IT MUCH

3003
01:52:05,685 --> 01:52:08,754
MORE EASILY, GET THE DATA IN A

3004
01:52:08,754 --> 01:52:11,924
STANDARDIZED WAY, AND THEN SHARE

3005
01:52:11,924 --> 01:52:17,830
IT SUBSEQUENTLY ACCORDING TO

3006
01:52:17,830 --> 01:52:20,266
APPROPRIATE DATA SHARING

3007
01:52:20,266 --> 01:52:22,334
POLICIES, IF IT'S RESEARCH, IRB,

3008
01:52:22,334 --> 01:52:24,637
IF IT'S PUBLIC HEALTH AUTHORITY,

3009
01:52:24,637 --> 01:52:27,707
PUBLIC HEALTH AUTHORITY, SO THE

3010
01:52:27,707 --> 01:52:30,776
TECHNOLOGY ITSELF DOES NOT

3011
01:52:30,776 --> 01:52:32,411
PRESENT PRIVACY ISSUES.

3012
01:52:32,411 --> 01:52:35,581
BUT THE WAY THAT IT'S USED JUST

3013
01:52:35,581 --> 01:52:38,517
LIKE THE WAY ANY TECHNOLOGY IS

3014
01:52:38,517 --> 01:52:39,618
USED, MIGHT PRESENT PRIVACY

3015
01:52:39,618 --> 01:52:40,052
ISSUES.

3016
01:52:40,052 --> 01:52:42,154
I'LL MENTION ONE MORE THING IN

3017
01:52:42,154 --> 01:52:43,556
THE TECHNOLOGY THAT WE'RE USING

3018
01:52:43,556 --> 01:52:45,758
IN ALL THESE PROJECTS I

3019
01:52:45,758 --> 01:52:47,193
MENTIONED FOR POPULATION HEALTH,

3020
01:52:47,193 --> 01:52:50,396
WE USE A VERY NOVEL PRIVACY

3021
01:52:50,396 --> 01:52:52,098
PRESERVING APPROACH WHERE THE

3022
01:52:52,098 --> 01:52:54,200
DATA ARE ONLY AGGREGATE COUNTS

3023
01:52:54,200 --> 01:52:56,268
AND YET CONTAIN HUGE AMOUNT OF

3024
01:52:56,268 --> 01:52:56,702
INFORMATION.

3025
01:52:56,702 --> 01:53:00,206
AND THIS HAS BEEN SOMETHING THAT

3026
01:53:00,206 --> 01:53:01,607
HAS BEEN VERY SUCCESSFUL

3027
01:53:01,607 --> 01:53:01,907
EXPERIMENT.

3028
01:53:01,907 --> 01:53:02,742
I'LL HOLD IT RIGHT THERE.

3029
01:53:02,742 --> 01:53:04,343
>> THANK YOU SO MUCH.

3030
01:53:04,343 --> 01:53:05,878
WITH THAT I WANT TO SAY THIS IS

3031
01:53:05,878 --> 01:53:07,413
SOMETHING WE'VE BEEN THINKING

3032
01:53:07,413 --> 01:53:09,915
ABOUT QUITE A LOT HERE AND WE'LL

3033
01:53:09,915 --> 01:53:10,883
CONTINUE THESE DISCUSSIONS

3034
01:53:10,883 --> 01:53:12,852
RELATED TO DATA AND CONTINUE TO

3035
01:53:12,852 --> 01:53:13,719
TRACK.

3036
01:53:13,719 --> 01:53:15,354
THANK YOU AGAIN, DR. MANDL, FOR

3037
01:53:15,354 --> 01:53:15,654
JOINING US.

3038
01:53:15,654 --> 01:53:17,790
THANK YOU FOR THE DISCUSSION.

3039
01:53:17,790 --> 01:53:21,494
WE'LL COME BACK, LET'S GIVE IT

3040
01:53:21,494 --> 01:53:23,796
2:16, PLEASE TAKE A MINUTE TO

3041
01:53:23,796 --> 01:53:25,431
TAKE AN ACTUAL BREAK AND WE WILL

3042
01:53:25,431 --> 01:53:30,202
BE BACK TO START UP AGAIN WITH
DR. ESPINOSA.

3043
01:53:30,202 --> 01:53:30,237
THANK YOU VERY MUCH. 

3044
01:53:57,089 --> 01:54:03,328
>> I WAS EVEN MORE
GENEROUS, 

3045
01:54:03,328 --> 01:54:03,529
2:17.

3046
01:54:03,529 --> 01:54:05,330
IS DR. ESPINOSA WITH US?

3047
01:54:05,330 --> 01:54:05,531
GREAT.

3048
01:54:05,531 --> 01:54:05,964
THANK YOU.

3049
01:54:05,964 --> 01:54:06,665
WELCOME BACK.

3050
01:54:06,665 --> 01:54:08,167
THANK YOU FOR STICKING WITH US

3051
01:54:08,167 --> 01:54:09,401
THROUGH A VERY SHORT BREAK.

3052
01:54:09,401 --> 01:54:15,274
IT IS NOW A PLEASURE TO

3053
01:54:15,274 --> 01:54:22,314
INTRODUCE DR. JOAQUIN ESPINOSA

3054
01:54:22,314 --> 01:54:23,715
ON TRISOMY 21, A NEW CLINICAL

3055
01:54:23,715 --> 01:54:28,520
TRIALS TESTING SAFETY AND

3056
01:54:28,520 --> 01:54:29,254
EFFICACY OF IMMUNOMODULATORY

3057
01:54:29,254 --> 01:54:31,323
THERAPIES TO TREAT DIVERSE

3058
01:54:31,323 --> 01:54:35,327
CO-OCCURRING CONDITIONS IN THIS

3059
01:54:35,327 --> 01:54:37,963
POPULATION. 

3060
01:54:37,963 --> 01:54:39,798
EXECUTIVE DIRECTOR AT THE

3061
01:54:39,798 --> 01:54:41,333
INSTITUTE FOR DOWN SYNDROME,

3062
01:54:41,333 --> 01:54:43,335
UNIVERSITY OF COLORADO,

3063
01:54:43,335 --> 01:54:45,170
PROFESSOR IN DEPARTMENT OF

3064
01:54:45,170 --> 01:54:46,405
PHARMACOLOGY, UNIVERSITY OF

3065
01:54:46,405 --> 01:54:48,574
COLORADO SCHOOL OF MEDICINE,

3066
01:54:48,574 --> 01:54:57,549
HOLDS ANNA AND JOHN  ENDOWED

3067
01:54:57,549 --> 01:55:03,021
CHAIR, RECEIVED A Ph.D. FROM

3068
01:55:03,021 --> 01:55:07,226
UNIVERSITY OF BUENOS AIRES,

3069
01:55:07,226 --> 01:55:08,760
ARGENTINA, IMMUNE DYSREGULATION

3070
01:55:08,760 --> 01:55:10,162
IN DOWN SYNDROME, MECHANISMS IN

3071
01:55:10,162 --> 01:55:11,063
CLINICAL TRIALS.

3072
01:55:11,063 --> 01:55:13,031
WELCOME, GREAT TO SEE YOU AGAIN.

3073
01:55:13,031 --> 01:55:13,999
THANK YOU FOR JOINING US.

3074
01:55:13,999 --> 01:55:15,968
>> THANK YOU VERY MUCH.

3075
01:55:15,968 --> 01:55:18,904
HOW IS THE AUDIO THIS AFTERNOON?

3076
01:55:18,904 --> 01:55:24,943
>>  PERFECT, SIR. 

3077
01:55:24,943 --> 01:55:26,745
THANK YOU.

3078
01:55:26,745 --> 01:55:31,850
>> GREAT. 

3079
01:55:31,850 --> 01:55:34,253
HOW ABOUT THE FIRST SLIDE, IS

3080
01:55:34,253 --> 01:55:35,354
THAT VISIBLE?

3081
01:55:35,354 --> 01:55:35,787
PERFECT.

3082
01:55:35,787 --> 01:55:37,089
YOU'RE READY TO PROCEED.

3083
01:55:37,089 --> 01:55:40,058
>> LET ME SET UP A TIMER
TO MAKE

3084
01:55:40,058 --> 01:55:42,027
SURE I DON'T OVEREXTEND MY

3085
01:55:42,027 --> 01:55:43,095
WELCOME.

3086
01:55:43,095 --> 01:55:45,964
THANK YOU VERY MUCH FOR THE

3087
01:55:45,964 --> 01:55:46,832
INVITATION AND OPPORTUNITY TO

3088
01:55:46,832 --> 01:55:51,770
SHARE WITH YOU SOME OF THE

3089
01:55:51,770 --> 01:55:55,274
RESEARCH FUNDED BY NIH HERE AT

3090
01:55:55,274 --> 01:55:57,609
THE LINDA CRNIC INSTITUTE FOR

3091
01:55:57,609 --> 01:55:58,443
DOWN SYNDROME.

3092
01:55:58,443 --> 01:56:00,712
I WOULD LIKE TO START BY

3093
01:56:00,712 --> 01:56:03,515
CELEBRATING PEOPLE WITH DOWN

3094
01:56:03,515 --> 01:56:05,684
SYNDROMEA DIVERSE POPULATION

3095
01:56:05,684 --> 01:56:07,219
SURPASSING ALL EXPECTATIONS,

3096
01:56:07,219 --> 01:56:12,691
MORE PERSONS ALIVE WITH DOWN

3097
01:56:12,691 --> 01:56:13,692
SYNDROME THAN EVER BEFORE,

3098
01:56:13,692 --> 01:56:15,227
LIVING LONGER THAN EVER BEFORE.

3099
01:56:15,227 --> 01:56:17,829
INDIVIDUALS WITH DOWN SYNDROME

3100
01:56:17,829 --> 01:56:19,464
ARE DEFINED BY OUTDATED NOTIONS

3101
01:56:19,464 --> 01:56:21,233
ABOUT WHAT IS POSSIBLE WHEN

3102
01:56:21,233 --> 01:56:23,969
LIVING WITH AN EXTRA CHROMOSOME.

3103
01:56:23,969 --> 01:56:26,371
WHO WOULD HAVE THOUGHT PEOPLE

3104
01:56:26,371 --> 01:56:28,807
WOULD BE PROTAGONISTS IN A TV

3105
01:56:28,807 --> 01:56:33,045
SHOW THAT WON MULTIPLE EMMY

3106
01:56:33,045 --> 01:56:36,248
AWARDS, MAIN CHARACTERS IN

3107
01:56:36,248 --> 01:56:39,284
HOLLYWOOD MOVIES, AUTHORS,

3108
01:56:39,284 --> 01:56:40,786
MUSICIANS, PUBLIC SPEAKERS, SO

3109
01:56:40,786 --> 01:56:40,953
ON.

3110
01:56:40,953 --> 01:56:43,889
THEY ARE CHALLENGING US TO THINK

3111
01:56:43,889 --> 01:56:44,423
DIFFERENTLY ABOUT THIS

3112
01:56:44,423 --> 01:56:45,857
CONDITION.

3113
01:56:45,857 --> 01:56:46,858
I WOULD LIKE TO EMPHASIZE DOWN

3114
01:56:46,858 --> 01:56:49,428
SYNDROME IS NOT A RARE DISEASE.

3115
01:56:49,428 --> 01:56:50,729
IT'S NEITHER RARE NOR A DISEASE.

3116
01:56:50,729 --> 01:56:52,197
IT'S A MEDICAL CONDITION THAT'S

3117
01:56:52,197 --> 01:56:55,334
THE LEADING CAUSE OF

3118
01:56:55,334 --> 01:56:56,802
INTELLECTUAL DEVELOPMENT

3119
01:56:56,802 --> 01:56:59,204
DISABILITY IN THE HUMAN

3120
01:56:59,204 --> 01:57:02,507
POPULATION, THIS GRAPH NEEDS

3121
01:57:02,507 --> 01:57:03,809
SOME UPDATING, IS ILLUSTRATING,

3122
01:57:03,809 --> 01:57:06,345
IF YOU LOOK AT THE AGE BRACKET

3123
01:57:06,345 --> 01:57:10,382
TO YOUNG TO OLD THE BIRTH RATE

3124
01:57:10,382 --> 01:57:12,117
HAS NOT DECREASED, NOT IN THE

3125
01:57:12,117 --> 01:57:14,853
USA, BECAUSE OF LARGE GAINS IN

3126
01:57:14,853 --> 01:57:15,654
LIFE EXPECTANCY SIGNIFICANT

3127
01:57:15,654 --> 01:57:18,290
GROWTH OF THE POPULATION WITH

3128
01:57:18,290 --> 01:57:20,158
DOWN SYNDROME, WHO HAVE NEW

3129
01:57:20,158 --> 01:57:24,663
PHENOMENON IN THE UNIVERSE,

3130
01:57:24,663 --> 01:57:27,299
ADULTS WITH DOWN SYNDROME.

3131
01:57:27,299 --> 01:57:29,568
NOW IT IS NO LONGER A RARITY.

3132
01:57:29,568 --> 01:57:31,670
A NEWBORN WITH DOWN SYNDROME

3133
01:57:31,670 --> 01:57:33,705
TODAY IN THE US IS EXPECTED TO

3134
01:57:33,705 --> 01:57:39,211
LIVE UP TO 60 YEARS OR SO, SO

3135
01:57:39,211 --> 01:57:40,712
CLEARLY HERE TO STAY.

3136
01:57:40,712 --> 01:57:41,847
NOW, THE CAUSE OF DOWN SYNDROME

3137
01:57:41,847 --> 01:57:46,885
HAS BEEN KNOWN SINCE THE LATE

3138
01:57:46,885 --> 01:57:52,024
'50s, AN EXTRA COPY OF

3139
01:57:52,024 --> 01:57:54,159
CHROMOSOME 21, SEQUENCED IN

3140
01:57:54,159 --> 01:57:55,761
2000, NOT MUTATIONS IN THE

3141
01:57:55,761 --> 01:57:59,731
STRICT SENSE, JUST AN EXTRA

3142
01:57:59,731 --> 01:58:02,434
COPY, 50% MORE OF THESE 225

3143
01:58:02,434 --> 01:58:02,868
GENES.

3144
01:58:02,868 --> 01:58:06,838
THE OBVIOUS QUESTION FOR US AS

3145
01:58:06,838 --> 01:58:08,674
SCIENTISTS HOW DOES THIS CAUSE

3146
01:58:08,674 --> 01:58:13,211
THE HALLMARKS OF DOWN SYNDROME?

3147
01:58:13,211 --> 01:58:14,913
NEW UNDERSTANDING OF DOWN

3148
01:58:14,913 --> 01:58:19,985
SYNDROME HAS BECOME CLEAR THAT

3149
01:58:19,985 --> 01:58:22,154
BEYOND THE TRAITS, DEVELOPMENTAL

3150
01:58:22,154 --> 01:58:23,155
DEDELAYS, EARLY AGING, PEOPLE

3151
01:58:23,155 --> 01:58:25,123
WITH DOWN SYNDROME HAVE A

3152
01:58:25,123 --> 01:58:30,929
DIFFERENT CLINICAL RISK PROFILE,

3153
01:58:30,929 --> 01:58:34,833
LESS LIKELY TO DEVELOP RARE

3154
01:58:34,833 --> 01:58:37,135
CONDITIONS, FOR EXAMPLE BREAST

3155
01:58:37,135 --> 01:58:45,777
CANCER, PROSTATE CANCER,

3156
01:58:45,777 --> 01:58:53,452
PROTECTED FROM HYPERTENSION,

3157
01:58:53,452 --> 01:58:54,319
HIGHLY DISPOSEsED TO

3158
01:58:54,319 --> 01:58:55,387
ALZHEIMER'S AND OTHER

3159
01:58:55,387 --> 01:58:56,822
CONDITIONS, YOU WANT TO HELP

3160
01:58:56,822 --> 01:58:59,124
PEOPLE WITH DOWN SYNDROME LIVE

3161
01:58:59,124 --> 01:59:01,293
LONGER HEALTHIER LIVES, WE MUST

3162
01:59:01,293 --> 01:59:03,895
STUDY CO-OCCURRING CONDITIONS OF

3163
01:59:03,895 --> 01:59:05,931
DOWN SYNDROME.

3164
01:59:05,931 --> 01:59:08,200
WITHIN THE FRAMEWORK HAD A

3165
01:59:08,200 --> 01:59:10,602
INFLECTION POINT IN 2017,

3166
01:59:10,602 --> 01:59:14,673
CONGRESSIONAL HEARING, ON DOWN

3167
01:59:14,673 --> 01:59:19,044
SYNDROME, WE EXPLAINED

3168
01:59:19,044 --> 01:59:21,413
OBSERVATIONS, A PRODUCTIVE

3169
01:59:21,413 --> 01:59:22,280
COLLABORATION WITH CONGRESS, THE

3170
01:59:22,280 --> 01:59:23,582
FOUNDATION AND OFFICERS LEADING

3171
01:59:23,582 --> 01:59:28,620
TO CRE ACE OF THE "INCLUDE"

3172
01:59:28,620 --> 01:59:28,954
PROJECT.

3173
01:59:28,954 --> 01:59:30,922
THE STAR OF THE FRANK STEPHENS,

3174
01:59:30,922 --> 01:59:32,257
I'M A MAN WITH DOWN SYNDROME,

3175
01:59:32,257 --> 01:59:34,559
AND MY LIFE IS WORTH LIVING.

3176
01:59:34,559 --> 01:59:35,761
PLEASE STUDY MY EXTRA

3177
01:59:35,761 --> 01:59:38,797
CHROMOSOME, A GIFT TO SCIENCE, A

3178
01:59:38,797 --> 01:59:41,233
GIFT TO HUMANKIND.

3179
01:59:41,233 --> 01:59:44,169
SO FOLLOWING YEAR IN 2018, NIH

3180
01:59:44,169 --> 01:59:46,371
LAUNCHED THE INCLUDE PROJECT, A

3181
01:59:46,371 --> 01:59:48,540
TRANS-NIH PROJECT TO INCREASE

3182
01:59:48,540 --> 01:59:51,176
RESEARCH ON DOWN SYNDROME, THIS

3183
01:59:51,176 --> 01:59:55,781
CHART SHOWS BEFORE "INCLUDE,"

3184
01:59:55,781 --> 01:59:59,184
INVESTMENT WAS $20 TO $30

3185
01:59:59,184 --> 02:00:00,819
MILLION, NOW WITH "INCLUDE" $130

3186
02:00:00,819 --> 02:00:07,325
MILLION. 

3187
02:00:07,325 --> 02:00:11,196
21 INSTITUTES PARTICIPATING, 400

3188
02:00:11,196 --> 02:00:13,532
AWARDS, HUNDREDS OF

3189
02:00:13,532 --> 02:00:14,633
PUBLICATIONS.

3190
02:00:14,633 --> 02:00:15,100
BASIC SCIENCE, COHORT

3191
02:00:15,100 --> 02:00:15,700
DEVELOPMENT, CLINICAL TRIALS.

3192
02:00:15,700 --> 02:00:17,769
I WOULD LIKE TO SHOW THE POWER

3193
02:00:17,769 --> 02:00:25,777
OF THE INCLUDE PROJECT AND THREE

3194
02:00:25,777 --> 02:00:27,312
COMPONENT STRUCTURE, FROM THE

3195
02:00:27,312 --> 02:00:29,080
DISCOVERY TO CLINICAL TRIALS,

3196
02:00:29,080 --> 02:00:30,615
DISCOVERY WAS ORIGINALLY

3197
02:00:30,615 --> 02:00:33,118
REPORTED IN 2016 LEADING THEN

3198
02:00:33,118 --> 02:00:36,721
WITH "INCLUDE" PROJECT TO TRIAL

3199
02:00:36,721 --> 02:00:37,923
IN 2020 SHOWING ACTIVITIES WHICH

3200
02:00:37,923 --> 02:00:40,091
LED TO A SECOND CLINICAL TRIAL

3201
02:00:40,091 --> 02:00:45,063
UNDERWAY, NOW A THIRD AND FOURTH

3202
02:00:45,063 --> 02:00:49,000
UNDER PREPARATION, SUPPORTED BY

3203
02:00:49,000 --> 02:00:52,270
MULTIPLE NIH INSTITUTES FOR

3204
02:00:52,270 --> 02:00:54,239
"INCLUDE."

3205
02:00:54,239 --> 02:00:56,007
COMPONENT 2, COHORT STUDIES, WE

3206
02:00:56,007 --> 02:01:05,517
HAVE A COHORT STUDY, THE HUMAN

3207
02:01:05,517 --> 02:01:08,353
TRIAL PROJECT, 1400 PARTICIPANTS

3208
02:01:08,353 --> 02:01:09,988
SINCE 2016.

3209
02:01:09,988 --> 02:01:13,391
WE SUPPORT "INCLUDE" PROJECT

3210
02:01:13,391 --> 02:01:15,660
GENERATING THIS OMICS DATASETS,

3211
02:01:15,660 --> 02:01:18,530
THEN SHARED WITH INCLUDE DATA,

3212
02:01:18,530 --> 02:01:22,033
INCLUDING PROJECT ADHERES TO

3213
02:01:22,033 --> 02:01:27,606
OPEN SCIENCE PRINCIPLES, DATA IS

3214
02:01:27,606 --> 02:01:27,839
SHARED.

3215
02:01:27,839 --> 02:01:29,574
PROJECTS HAVE IN TURN SECURED

3216
02:01:29,574 --> 02:01:32,210
NIH FUNDING LEADING TO MANY

3217
02:01:32,210 --> 02:01:32,744
PUBLICATIONS.

3218
02:01:32,744 --> 02:01:35,280
ONE KEY OBSERVATION FROM THIS

3219
02:01:35,280 --> 02:01:38,884
COHORT STUDY NOW REPRODUCED IN

3220
02:01:38,884 --> 02:01:41,386
OTHER COHORT STUDIES, THERE'S

3221
02:01:41,386 --> 02:01:42,721
WIDESPREAD AUTOIMMUNITY IN

3222
02:01:42,721 --> 02:01:47,192
PEOPLE WITH DOWN SYNDROME.

3223
02:01:47,192 --> 02:01:51,329
75% OF ADULTS HAVE BEEN

3224
02:01:51,329 --> 02:01:53,331
DIAGNOSED WITH AN AUTOIMMUNE

3225
02:01:53,331 --> 02:01:56,401
DECISION, MOST COMMON IS THYROID

3226
02:01:56,401 --> 02:01:57,269
DISEASE.

3227
02:01:57,269 --> 02:02:01,640
SOMETHING MORE RECENTLY

3228
02:02:01,640 --> 02:02:07,879
APPRECIATED IS HIGH PREVALENCE

3229
02:02:07,879 --> 02:02:10,949
OF ALOPECIA, ATOPIC DERMATITIS,

3230
02:02:10,949 --> 02:02:11,316
PSORIASIS.

3231
02:02:11,316 --> 02:02:13,885
TEN TIMES MORE COMMON IN DOWN

3232
02:02:13,885 --> 02:02:22,961
SYNDROME RELATIVE TO THE GENERAL

3233
02:02:22,961 --> 02:02:24,095
POPULATION, CELIAC DISEASE.

3234
02:02:24,095 --> 02:02:26,798
I SHOULD POINT OUT RELEVANT TO

3235
02:02:26,798 --> 02:02:29,568
NICHD THAT 80% OF THESE

3236
02:02:29,568 --> 02:02:31,336
CONDITIONS ARE DIAGNOSED DURING

3237
02:02:31,336 --> 02:02:38,176
PEDIATRIC AGE.

3238
02:02:38,176 --> 02:02:43,281
SO THE TITLE OF THE PAPER SAYS

3239
02:02:43,281 --> 02:02:45,517
TRISOMY 21 ACTIVATES INTERFERON

3240
02:02:45,517 --> 02:02:47,252
RESPONSE, SIGNALING IS PART OF

3241
02:02:47,252 --> 02:02:50,322
THE INNATE IMMUNE SYSTEM TO

3242
02:02:50,322 --> 02:02:51,389
FIGHT OUR VIRUSES, INTERFERONS

3243
02:02:51,389 --> 02:02:59,497
HAVE SITE  -- CYTOKINES, TRIGGER

3244
02:02:59,497 --> 02:03:00,498
EGGER IMMUNE CELLS.

3245
02:03:00,498 --> 02:03:02,334
TOO MUCH OF THIS GOOD THING

3246
02:03:02,334 --> 02:03:04,002
COULD BE BAD, SPECIFICALLY

3247
02:03:04,002 --> 02:03:07,439
LEADING TO RISK OF AUTOIMMUNITY.

3248
02:03:07,439 --> 02:03:09,608
WHY WOULD PEOPLE WITH DOWN

3249
02:03:09,608 --> 02:03:13,545
SYNDROME HAVE HYPERACTIVE

3250
02:03:13,545 --> 02:03:15,180
INTERFERON SIGNALING IN FOUR

3251
02:03:15,180 --> 02:03:16,615
INTERFERON RECEPTOR GENES ON

3252
02:03:16,615 --> 02:03:23,655
CHROMOSOME 21, THREE TYPES OF

3253
02:03:23,655 --> 02:03:33,832
INTERFERON SIGNAL, DIFFERENT

3254
02:03:33,832 --> 02:03:37,669
LIGANDS AND RECEPTORS, TRIGGER

3255
02:03:37,669 --> 02:03:39,504
JAK/STAT CASCADE, LEADING TO

3256
02:03:39,504 --> 02:03:45,410
IMMUNE RESPONSE. 

3257
02:03:45,410 --> 02:03:47,278
THE HYPOTHESIS HERE IS THIS

3258
02:03:47,278 --> 02:03:50,348
RESPONSE INCREASES JAK/STAT

3259
02:03:50,348 --> 02:03:52,651
SIGNALING OVEREXPRESSION CHRONIC

3260
02:03:52,651 --> 02:03:54,753
IMMUNE ACTIVATION AND

3261
02:03:54,753 --> 02:03:56,788
AUTOINFLAMMATION COULD IN TURN

3262
02:03:56,788 --> 02:03:58,723
CONTRIBUTE TO CLINICAL

3263
02:03:58,723 --> 02:03:59,891
DEVELOPMENT HALLMARKS OF DOWN

3264
02:03:59,891 --> 02:04:00,158
SYNDROME.

3265
02:04:00,158 --> 02:04:02,293
LET ME SHOW ONE PIECE OF DATA

3266
02:04:02,293 --> 02:04:06,131
FROM THIS PAPER TO PUT IN

3267
02:04:06,131 --> 02:04:06,464
PERSPECTIVE.

3268
02:04:06,464 --> 02:04:09,200
THIS GRAPH SHOWS INTERFERON

3269
02:04:09,200 --> 02:04:10,935
COURSE, MEASURING THOSE

3270
02:04:10,935 --> 02:04:13,338
INTERFERON STIMULATED GENES,

3271
02:04:13,338 --> 02:04:16,574
GIVING RESEARCH PARTICIPANTS A

3272
02:04:16,574 --> 02:04:18,610
VALUE, PARTICIPANTS IN THE

3273
02:04:18,610 --> 02:04:19,577
GENERAL POPULATION, THE

3274
02:04:19,577 --> 02:04:21,246
CONTROLS, LOOK AT PARTICIPANTS

3275
02:04:21,246 --> 02:04:24,382
WITH DOWN SYNDROME, MORE THAN

3276
02:04:24,382 --> 02:04:26,685
TEN-FOLD HIGHER INTERFERON

3277
02:04:26,685 --> 02:04:29,654
SCORES WITH STRONG VIABILITY FOR

3278
02:04:29,654 --> 02:04:30,522
COMPARISON PURPOSES I'M SHOWING

3279
02:04:30,522 --> 02:04:33,058
HERE THE SAME INTERFERON SCORES

3280
02:04:33,058 --> 02:04:34,793
IN THE GENERAL POPULATION

3281
02:04:34,793 --> 02:04:37,729
WITHOUT AND WITH COVID-19.

3282
02:04:37,729 --> 02:04:38,496
LOOK AT THE SCALES.

3283
02:04:38,496 --> 02:04:39,497
THE SAME SCALE.

3284
02:04:39,497 --> 02:04:41,232
IN OTHER WORDS, BY THIS METRIC

3285
02:04:41,232 --> 02:04:43,101
THE BLOOD OF PEOPLE WITH DOWN

3286
02:04:43,101 --> 02:04:46,504
SYNDROME LOOKS LIKE THE BLOOD OF

3287
02:04:46,504 --> 02:04:51,543
A PERSON HOSPITALIZED WITH

3288
02:04:51,543 --> 02:04:52,410
COVID-19.

3289
02:04:52,410 --> 02:04:57,215
SO, FOLLOW-UP PUBLICATION,

3290
02:04:57,215 --> 02:05:03,121
PLASMA PROTEOMICS ANALYSIS, MANY

3291
02:05:03,121 --> 02:05:05,857
INFLAMMATORY FACTORS WE KNOW ARE

3292
02:05:05,857 --> 02:05:07,092
DRIVERS OF AUTOIMMUNE

3293
02:05:07,092 --> 02:05:08,393
CONDITIONS, BY THIS METRIC THE

3294
02:05:08,393 --> 02:05:10,595
BLOOD OF INDIVIDUALS WITH

3295
02:05:10,595 --> 02:05:12,230
TRISOMY 21 RESEMBLES BLOOD OF

3296
02:05:12,230 --> 02:05:14,766
THOSE IN THE GENERAL POPULATION

3297
02:05:14,766 --> 02:05:16,835
AFFECTED BY AUTO-INFLAMMATORY

3298
02:05:16,835 --> 02:05:18,803
CONDITIONS, FOR EXAMPLE, SAY

3299
02:05:18,803 --> 02:05:19,871
RHEUMATOID ARTHRITIS.

3300
02:05:19,871 --> 02:05:21,873
SUPER CHARGED WITH SUPPORT FROM

3301
02:05:21,873 --> 02:05:25,143
THE "INCLUDE" PROJECT WE

3302
02:05:25,143 --> 02:05:26,878
EMBARKED MORE AMBITIOUS EFFORTS

3303
02:05:26,878 --> 02:05:30,815
ALWAYS IN THE HUMAN TRIALS

3304
02:05:30,815 --> 02:05:33,118
PROJECT, REPORTING THE MAP OF

3305
02:05:33,118 --> 02:05:37,622
THE IMMUNE SYSTEM SHOWING GLOBAL

3306
02:05:37,622 --> 02:05:38,990
IMMUNE REMODEL, HYPERSENSITIVITY

3307
02:05:38,990 --> 02:05:40,358
TO INTERFERONS, IT'S HARD TO

3308
02:05:40,358 --> 02:05:43,194
FIND AN ASPECT OF THE IMMUNE

3309
02:05:43,194 --> 02:05:44,829
SYSTEM THAT'S NOT DIFFERENT IN

3310
02:05:44,829 --> 02:05:45,630
DOWN SYNDROME.

3311
02:05:45,630 --> 02:05:51,636
MANY IMMUNE CELL TYPES ARE

3312
02:05:51,636 --> 02:05:52,303
INCREASING FREQUENCY,

3313
02:05:52,303 --> 02:05:53,171
PRO-INFLAMMATORY, AUTOIMMUNITY,

3314
02:05:53,171 --> 02:05:56,574
THAT COMES AT EXPENSE, MANY

3315
02:05:56,574 --> 02:05:58,743
OTHER CELLS BECOME EXHAUSTED,

3316
02:05:58,743 --> 02:06:00,345
OVER A LIFETIME.

3317
02:06:00,345 --> 02:06:04,215
ALL ADULTS WITH DOWN SYNDROME

3318
02:06:04,215 --> 02:06:05,083
ARE IMMUNOCOMPROMISED, SENSITIVE

3319
02:06:05,083 --> 02:06:06,951
TO LUNG INFECTIONS.

3320
02:06:06,951 --> 02:06:09,487
WE WERE ABLE TO DEMONSTRATE

3321
02:06:09,487 --> 02:06:10,488
PROFOUND METABOLIC

3322
02:06:10,488 --> 02:06:11,289
DYSREGULATION.

3323
02:06:11,289 --> 02:06:17,562
THIS IS DONE THROUGH PLASMA

3324
02:06:17,562 --> 02:06:20,064
METABOLOMICS ANALYSIS INCLUDING

3325
02:06:20,064 --> 02:06:26,971
WHAT WE CALL IMMUNOMETABOLOMIC

3326
02:06:26,971 --> 02:06:30,475
PATHWAYS, THIS CONVERTS

3327
02:06:30,475 --> 02:06:31,142
TRYPTOPHAN INTO NEUROTOXIC

3328
02:06:31,142 --> 02:06:36,614
CATABOLITES, IF THEY GET TO YOUR

3329
02:06:36,614 --> 02:06:39,117
BRAIN CAUSE DAMAGE, SEIZURES,

3330
02:06:39,117 --> 02:06:39,551
EXCITATORY TOXICITY.

3331
02:06:39,551 --> 02:06:43,188
THIS COULD PROVIDE A LINK

3332
02:06:43,188 --> 02:06:44,122
BETWEEN INFLAMMATION AND

3333
02:06:44,122 --> 02:06:46,024
NEUROLOGICAL PHENOTYPES IN DOWN

3334
02:06:46,024 --> 02:06:46,291
SYNDROME.

3335
02:06:46,291 --> 02:06:48,760
THERE ARE MANY MORE

3336
02:06:48,760 --> 02:06:50,061
PUBLICATIONS, BY US AND OTHERS,

3337
02:06:50,061 --> 02:06:52,497
THIS IS NOW AN ENTIRE FIELD OF

3338
02:06:52,497 --> 02:06:52,831
RESEARCH.

3339
02:06:52,831 --> 02:06:55,233
THE POINT I'M MAKING IS

3340
02:06:55,233 --> 02:06:56,301
INTERFERON SIGNALING IS

3341
02:06:56,301 --> 02:06:57,035
HYPERACTIVE IN DOWN SYNDROME.

3342
02:06:57,035 --> 02:06:59,070
THE QUESTION IS SO WHAT?

3343
02:06:59,070 --> 02:07:03,007
WHAT ARE THE IMPACTS?

3344
02:07:03,007 --> 02:07:03,875
HYPERACTIVE INTERFERON IN DOWN

3345
02:07:03,875 --> 02:07:06,978
SYNDROME, COULD IT BE UNDERSTOOD

3346
02:07:06,978 --> 02:07:09,013
IN PART AS AN INTERFERONOPATHY?

3347
02:07:09,013 --> 02:07:11,549
WE MOVE TO COMPONENT ONE, BASIC

3348
02:07:11,549 --> 02:07:14,519
SCIENCE APPROACHES.

3349
02:07:14,519 --> 02:07:20,191
EARLY WORK FROM THE BIANCHI LAB

3350
02:07:20,191 --> 02:07:21,426
AT NIH DOCUMENTED IN MOUSE

3351
02:07:21,426 --> 02:07:28,333
MODELS CARRYING THREE COPIES OF

3352
02:07:28,333 --> 02:07:28,600
RECEPTORS.

3353
02:07:28,600 --> 02:07:31,369
WE ASKED WHAT WOULD HAPPEN IF WE

3354
02:07:31,369 --> 02:07:33,238
COULD NORMALIZE COPY NUMBERS

3355
02:07:33,238 --> 02:07:34,439
JUST FOR RECEPTORS, AND THE

3356
02:07:34,439 --> 02:07:37,609
TITLE SAYS IT ALL.

3357
02:07:37,609 --> 02:07:38,509
TRIPLICATION OF LOCUS

3358
02:07:38,509 --> 02:07:39,477
CONTRIBUTES TO HALLMARKS OF DOWN

3359
02:07:39,477 --> 02:07:41,246
SYNDROME IN MOUSE MODEL.

3360
02:07:41,246 --> 02:07:44,749
SO I'D LIKE TO SHOW ONE PIECE OF

3361
02:07:44,749 --> 02:07:47,385
DATA BECAUSE THIS IS ONE OF THE

3362
02:07:47,385 --> 02:07:49,020
AMAZING THINGS WE CAN LEARN IN

3363
02:07:49,020 --> 02:07:55,927
THE 21ST CENTURY IN THE LAB.

3364
02:07:55,927 --> 02:07:56,895
CRISPR GENOME EDITING TECHNOLOGY

3365
02:07:56,895 --> 02:08:06,237
WE DELETED ONE COPY OF THIS

3366
02:08:06,237 --> 02:08:09,173
INTERFERON GENE CLUSTER, THOSE

3367
02:08:09,173 --> 02:08:12,043
INTERFERON RECEPTORS THAT WERE

3368
02:08:12,043 --> 02:08:13,011
OVEREXPRESSED IN THE MOUSE MODEL

3369
02:08:13,011 --> 02:08:16,748
MOUSE MODEL NOW THEY ARE NO

3370
02:08:16,748 --> 02:08:18,182
LONGER OVEREXPRESSED IN THAT

3371
02:08:18,182 --> 02:08:20,585
ANIMAL THAT'S BEEN ENGINEERED.

3372
02:08:20,585 --> 02:08:23,321
OTHER TRIPLICATED GENES LIKE

3373
02:08:23,321 --> 02:08:32,297
THOSE SHOWN HERE REMAIN

3374
02:08:32,297 --> 02:08:32,730
OVEREXPRESSED.

3375
02:08:32,730 --> 02:08:35,099
ALLOWS YOU CONTINUE OF RECEPTORS

3376
02:08:35,099 --> 02:08:39,304
RELATIVE TO GENES THAT ARE

3377
02:08:39,304 --> 02:08:39,604
TRIPLICATED.

3378
02:08:39,604 --> 02:08:46,444
RECEPTORS CONTINUE TO

3379
02:08:46,444 --> 02:08:48,179
DYSREGULATION ACROSS EVERY

3380
02:08:48,179 --> 02:08:58,690
TISSUE, CONFER  CONTRIBUTE TO

3381
02:09:04,796 --> 02:09:05,463
HYPERSENSITIVITY, CRANIAL

3382
02:09:05,463 --> 02:09:06,097
ABNORMALITIES, INTERFERONOPATHY

3383
02:09:06,097 --> 02:09:10,101
STARTS IN THE WOMB BECAUSE

3384
02:09:10,101 --> 02:09:12,637
CONGENITAL FORMATION, FACIAL

3385
02:09:12,637 --> 02:09:13,204
ABNORMALITIES ARE EMBRYONIC

3386
02:09:13,204 --> 02:09:23,448
SIGNAL  TYPES.

3387
02:09:23,982 --> 02:09:30,288
WE GOT VERY LUCKY HERE, THE

3388
02:09:30,288 --> 02:09:32,023
PHARMACEUTICAL INDUSTRY HAS

3389
02:09:32,023 --> 02:09:33,591
DEVELOPED JAK INHIBITORS, SOME

3390
02:09:33,591 --> 02:09:39,263
SHOWN HERE, NOT A COMPREHENSIVE

3391
02:09:39,263 --> 02:09:39,697
TABLE.

3392
02:09:39,697 --> 02:09:43,534
MANY BRAND NAMES, TARGET JAK

3393
02:09:43,534 --> 02:09:43,968
KINASES.

3394
02:09:43,968 --> 02:09:45,069
THE PLUS SYMBOL INDICATES

3395
02:09:45,069 --> 02:09:46,371
APPROVAL FOR THAT CONDITION.

3396
02:09:46,371 --> 02:09:50,008
AS YOU CAN SEE MEDICINESES ARE

3397
02:09:50,008 --> 02:09:52,310
USED BY PHYSICIANS IN MANY

3398
02:09:52,310 --> 02:09:53,277
DISCIPLINES.

3399
02:09:53,277 --> 02:09:55,913
COULD THIS JAK INHIBITOR

3400
02:09:55,913 --> 02:09:58,416
NORMALIZE IN DOWN SYNDROME?

3401
02:09:58,416 --> 02:10:05,990
SO WE WOULD NOT BE AFFECTING THE

3402
02:10:05,990 --> 02:10:07,058
LIGANDS, MESSING WITH RECEPTORS,

3403
02:10:07,058 --> 02:10:14,966
SMALL  MOLECULES BLOCKING

3404
02:10:14,966 --> 02:10:16,834
PATHWAYS, NEED TO BE TAKEN

3405
02:10:16,834 --> 02:10:20,004
DAILY, SHORT HALF-LIFE IN THE

3406
02:10:20,004 --> 02:10:22,540
BODY, CLEARED RAPIDLY IF ONE

3407
02:10:22,540 --> 02:10:26,677
NEEDS TO REVERSE THE

3408
02:10:26,677 --> 02:10:27,011
INTERVENTION.

3409
02:10:27,011 --> 02:10:31,282
NOW COMPONENT THERE, CLINICAL

3410
02:10:31,282 --> 02:10:32,583
TRIALS, TREATING FIVE IMMUNE

3411
02:10:32,583 --> 02:10:34,685
CONDITIONS IN A SINGLE TRIAL,

3412
02:10:34,685 --> 02:10:37,388
ALL THESE CONDITIONS SHOWN HERE,

3413
02:10:37,388 --> 02:10:42,026
MORE COMMON IN DOWN SYNDROME,

3414
02:10:42,026 --> 02:10:44,228
35% OF ADULTS WITH DOWN SYNDROME

3415
02:10:44,228 --> 02:10:45,930
AFFECTED BY AT LEAST ONE,

3416
02:10:45,930 --> 02:10:48,900
PROTOCOL FOUR TO NINE MONTHS OF

3417
02:10:48,900 --> 02:10:51,669
TREATMENT WITH FDA-APPROVED

3418
02:10:51,669 --> 02:11:02,213
INHIBITOR THAT IS NOT APPROVED,

3419
02:11:08,486 --> 02:11:18,162
APPROVED FOR ARTHRITIS. 

3420
02:11:18,162 --> 02:11:19,931
>> IF YOU CAN HEAR ME YOU
FROZE

3421
02:11:19,931 --> 02:11:21,766
ON OUR SIDE.

3422
02:11:21,766 --> 02:11:22,767
WE'RE JUST WAITING FOR YOU TO

3423
02:11:22,767 --> 02:11:26,504
CATCH BACK UP WITH US.

3424
02:11:26,504 --> 02:11:32,510
 

3425
02:11:32,510 --> 02:11:38,649
 

3426
02:11:38,649 --> 02:11:40,618
WE CAN HEAR YOU.

3427
02:11:40,618 --> 02:11:42,720
WE NEED TO RESHARE YOUR SLIDES.

3428
02:11:42,720 --> 02:11:44,021
>> VERY GOOD.

3429
02:11:44,021 --> 02:11:46,757
>> OR WE CAN PULL THEM UP
IF YOU

3430
02:11:46,757 --> 02:11:48,226
SAY NEXT SLIDE.

3431
02:11:48,226 --> 02:11:49,961
LET ME KNOW WHICH WAY.

3432
02:11:49,961 --> 02:11:52,563
>> GO AHEAD.

3433
02:11:52,563 --> 02:11:53,331
SHARE AGAIN.

3434
02:11:53,331 --> 02:11:57,835
>> OKAY. 

3435
02:11:57,835 --> 02:12:00,004
THERE WAS A BIT OF AN

3436
02:12:00,004 --> 02:12:02,106
INTERACTION THERE.

3437
02:12:02,106 --> 02:12:03,941
>> YES, OKAY.

3438
02:12:03,941 --> 02:12:07,345
THAT'S WHY WE LIKE TECHNOLOGY,

3439
02:12:07,345 --> 02:12:09,213
BECAUSE IT'S SEAMLESS.

3440
02:12:09,213 --> 02:12:10,181
>> HERE WE GO.

3441
02:12:10,181 --> 02:12:11,182
>> THERE IT IS.

3442
02:12:11,182 --> 02:12:13,050
NOW WE'RE GOOD.

3443
02:12:13,050 --> 02:12:13,484
PERFECT.

3444
02:12:13,484 --> 02:12:14,886
>> VERY GOOD.

3445
02:12:14,886 --> 02:12:18,656
SO WE'RE SHARING ABOUT THE

3446
02:12:18,656 --> 02:12:21,459
CLINICAL TRIALS PROTOCOL,

3447
02:12:21,459 --> 02:12:22,693
ENDPOINTS, SKIN PATHOLOGY, AND

3448
02:12:22,693 --> 02:12:24,462
CONDITION AND QUALITY OF LIFE

3449
02:12:24,462 --> 02:12:26,898
WHILE WE'RE AT IT.

3450
02:12:26,898 --> 02:12:29,300
OPEN LABEL, EVERYONE RECEIVED

3451
02:12:29,300 --> 02:12:33,337
THE MEDICINE.

3452
02:12:33,337 --> 02:12:38,409
GOAL WAS 40 PARTICIPANTS, WITH

3453
02:12:38,409 --> 02:12:40,912
ONE JAK INHIBITOR.

3454
02:12:40,912 --> 02:12:42,213
STRONG REPRESENTATION OF

3455
02:12:42,213 --> 02:12:44,515
MINORITIES, 25% HISPANIC, 15%

3456
02:12:44,515 --> 02:12:45,716
BLACK OR BIRACIAL.

3457
02:12:45,716 --> 02:12:47,485
WE WERE ABLE TO BRING MANY

3458
02:12:47,485 --> 02:12:49,420
FAMILIES FROM ACROSS THE COUNTRY

3459
02:12:49,420 --> 02:12:51,322
TO COLORADO TO PARTICIPATE IN

3460
02:12:51,322 --> 02:12:53,925
THE TRIAL. 

3461
02:12:53,925 --> 02:12:58,629
MOST COMMON QUALIFYING

3462
02:12:58,629 --> 02:13:01,032
CONDITIONS WERE HIDRANETIS,

3463
02:13:01,032 --> 02:13:02,066
ALOPECIA, PSORIASIS.

3464
02:13:02,066 --> 02:13:03,768
THE MEDICINE IS SAFE TO EMPLOY

3465
02:13:03,768 --> 02:13:05,736
IN DOWN SYNDROME.

3466
02:13:05,736 --> 02:13:09,140
THIS SHOWS THE MOST COMMON

3467
02:13:09,140 --> 02:13:11,309
ADVERSE EVENTSES, AFFECTING ONLY

3468
02:13:11,309 --> 02:13:18,216
A MINORITY, RUNNY NOSE, COUGH,

3469
02:13:18,216 --> 02:13:21,185
WEIGHT GAIN.

3470
02:13:21,185 --> 02:13:26,224
WEIGHT CHANGES, SKIN RASH, A

3471
02:13:26,224 --> 02:13:28,726
SINGLE ADVERSE EVENT, 27.7 YEARS

3472
02:13:28,726 --> 02:13:35,399
OFFING ONS VASE, AN EPISODE OF

3473
02:13:35,399 --> 02:13:37,034
THROMBOEMBOLISM WITH

3474
02:13:37,034 --> 02:13:39,637
CONTRACEPTIVE PILLS, PARTICIPANT

3475
02:13:39,637 --> 02:13:48,846
RECOVERED FAVORABLY.

3476
02:13:48,846 --> 02:13:49,814
TEN-FOLD INCREASE INTERFERON

3477
02:13:49,814 --> 02:13:50,481
ACTIVITY, PARTICIPANTS IN

3478
02:13:50,481 --> 02:13:52,783
CLINICAL TRIAL START AT

3479
02:13:52,783 --> 02:13:55,219
BASELINE, AVERAGE FOR DOWN

3480
02:13:55,219 --> 02:13:56,754
SYNDROME, AND THEN THEY COME

3481
02:13:56,754 --> 02:14:00,458
DOWN TO WITHIN THE NORMAL RANGE,

3482
02:14:00,458 --> 02:14:03,527
EIGHT TO NINE-FOLD.

3483
02:14:03,527 --> 02:14:04,495
IMMUNOMODULATING, NOT

3484
02:14:04,495 --> 02:14:06,430
NECESSARILY SUPPRESSING THE

3485
02:14:06,430 --> 02:14:10,067
IMMUNE SYSTEM.

3486
02:14:10,067 --> 02:14:11,469
JAK INHIBITOR REDUCED CYTOKINE

3487
02:14:11,469 --> 02:14:12,937
SCORES, IMMUNE METABOLITES IN

3488
02:14:12,937 --> 02:14:13,371
THE PATHWAY.

3489
02:14:13,371 --> 02:14:15,673
HOW ABOUT THE SKIN?

3490
02:14:15,673 --> 02:14:19,310
LOOK AT THIS. 

3491
02:14:19,310 --> 02:14:22,813
A YOUNG MAN FROM TEXAS COMING TO

3492
02:14:22,813 --> 02:14:23,247
COLORADO.

3493
02:14:23,247 --> 02:14:32,023
86% OF SCALP IS AFFECTED AT

3494
02:14:32,023 --> 02:14:33,424
BASELINE, YOU SEE NOW HE CAN

3495
02:14:33,424 --> 02:14:35,826
GROW THE BEAUTIFUL RED HAIR.

3496
02:14:35,826 --> 02:14:44,035
WE KNOW WHY HIS FRIENDS CALL HIM

3497
02:14:44,035 --> 02:14:45,703
ED SHEERAN.

3498
02:14:45,703 --> 02:14:46,871
ANOTHER PARTICIPANT, CLEAR WHEN

3499
02:14:46,871 --> 02:14:48,739
GOING ON THIS MEDICINE.

3500
02:14:48,739 --> 02:14:50,141
THIS PARTICIPANT WAS SO

3501
02:14:50,141 --> 02:14:52,009
INCAPACITATED COULDN'T COME TO

3502
02:14:52,009 --> 02:14:54,545
COLORADO, WAS GIVEN MEDICINE BY

3503
02:14:54,545 --> 02:14:56,380
A COLLEAGUE IN VERMONT.

3504
02:14:56,380 --> 02:15:01,886
YOU WILL HEAR LATER TODAY ABOUT

3505
02:15:01,886 --> 02:15:02,353
THIS.

3506
02:15:02,353 --> 02:15:03,421
WHAT ABOUT CONDITION?

3507
02:15:03,421 --> 02:15:08,059
WE MEASURED A LOT OF THINGS.

3508
02:15:08,059 --> 02:15:11,329
WORKING MEMORY, EPISODIC AND

3509
02:15:11,329 --> 02:15:15,299
SPECIAL MEMORY, MOTOR CONTROL,

3510
02:15:15,299 --> 02:15:17,034
DEVELOPMENT, QUALITY OF LIFE.

3511
02:15:17,034 --> 02:15:21,005
WITHOUT A PLACEBO CONTROL, WE

3512
02:15:21,005 --> 02:15:25,676
CANNOT DISCARD PLACEBO EFFECTS,

3513
02:15:25,676 --> 02:15:26,444
TREATMENT EFFECTS BUT

3514
02:15:26,444 --> 02:15:31,315
SOMETIMES -- LOOK AT THIS LADY,

3515
02:15:31,315 --> 02:15:32,350
28 YEARS OLD, REGRESSION

3516
02:15:32,350 --> 02:15:33,584
DISORDER, THIS IS BASELINE.

3517
02:15:33,584 --> 02:15:35,886
WE'RE ASKING HER TO DRAW THE

3518
02:15:35,886 --> 02:15:40,891
PATH OF THE CAR AND MOTORCYCLE

3519
02:15:40,891 --> 02:15:42,993
WITH PENCIL, SHE'S NOT FULLY

3520
02:15:42,993 --> 02:15:43,961
COMPREHENDING.

3521
02:15:43,961 --> 02:15:44,962
SHE'S COLORING.

3522
02:15:44,962 --> 02:15:48,833
AT 16 WEEKS SHE WAS IN A MUCH

3523
02:15:48,833 --> 02:15:51,235
BETTER SPACE.

3524
02:15:51,235 --> 02:15:55,606
BEFORE TREATMENT RECEIVING

3525
02:15:55,606 --> 02:15:56,207
ELECTRO CONVULSIVE TREMENDOUS,

3526
02:15:56,207 --> 02:15:59,977
AND AT THE END A MEDICINE WAS

3527
02:15:59,977 --> 02:16:02,179
PRESCRIBED, WE'RE TRYING TO

3528
02:16:02,179 --> 02:16:04,782
REPURPOSE FOR SKIN PURPOSES IN

3529
02:16:04,782 --> 02:16:06,650
DOWN SYNDROME, THIS WOMAN NOW

3530
02:16:06,650 --> 02:16:08,052
TAKING IT FOR REGRESSION

3531
02:16:08,052 --> 02:16:08,285
DISORDER

3532
02:16:08,285 --> 02:16:10,354
WHAT IS THAT?

3533
02:16:10,354 --> 02:16:12,456
IT'S A CONDITION CHARACTERIZED

3534
02:16:12,456 --> 02:16:22,933
BY RAPID ONSET, DAYS, WEEKS,

3535
02:16:23,567 --> 02:16:24,668
CATATONIA, HALLUCINATIONS, A

3536
02:16:24,668 --> 02:16:27,972
SUBSET OF THESE CASES SCIENCE

3537
02:16:27,972 --> 02:16:30,474
CASES ARE ASSOCIATED WITH IMMUNE

3538
02:16:30,474 --> 02:16:31,475
DYSREGULATION AFFECTING THE

3539
02:16:31,475 --> 02:16:34,311
BRAIN SIMILAR TO WHAT WE KNOW IN

3540
02:16:34,311 --> 02:16:35,212
THE GENERAL POPULATION,

3541
02:16:35,212 --> 02:16:37,047
ENCEPHALITIS, THESE ARE SOME OF

3542
02:16:37,047 --> 02:16:41,452
THE PAPERS PROVIDING EVIDENCE

3543
02:16:41,452 --> 02:16:42,086
FOR THE HYPOTHESIS.

3544
02:16:42,086 --> 02:16:44,622
IT WAS FAMILIES AND MOMS THAT

3545
02:16:44,622 --> 02:16:46,490
REALLY ASKED QUESTIONS AND MADE

3546
02:16:46,490 --> 02:16:48,325
CONNECTIONS BRINGING TO THE

3547
02:16:48,325 --> 02:16:51,328
PROFESSIONALS SUCH AS DR.

3548
02:16:51,328 --> 02:16:53,931
SANTORA LEADING TO THE FIRST

3549
02:16:53,931 --> 02:16:57,234
RANDOMIZED CLINICAL TRIAL FOR

3550
02:16:57,234 --> 02:16:59,203
REGRESSION DISORDER, STUDY

3551
02:16:59,203 --> 02:17:04,341
COVERED ON THE COVER OF THE

3552
02:17:04,341 --> 02:17:06,177
WASHINGTON POST, THEY DID A GOOD

3553
02:17:06,177 --> 02:17:09,680
JOB AT RECOGNIZING THE MOMS AND

3554
02:17:09,680 --> 02:17:12,082
YOU'LL HEAR FROM LINDA IN A FEW

3555
02:17:12,082 --> 02:17:12,516
MINUTES.

3556
02:17:12,516 --> 02:17:17,688
NOW WE'RE IN THE BUSINESS OF

3557
02:17:17,688 --> 02:17:23,160
THERAPIES FOR REGRESSION, IMMUNE

3558
02:17:23,160 --> 02:17:31,235
THERAPIES VERSUS INTERVENOUS

3559
02:17:31,235 --> 02:17:33,003
IMMUNOGLOBULIN, LORAZEPAM, WITH

3560
02:17:33,003 --> 02:17:36,407
LOS ANGELES AND COLORADO, KEY

3561
02:17:36,407 --> 02:17:36,841
MEMBERS.

3562
02:17:36,841 --> 02:17:38,242
REPURPOSE DRUGS APPROVED FOR

3563
02:17:38,242 --> 02:17:39,310
OTHER CONDITIONS, ALL BENEFITED

3564
02:17:39,310 --> 02:17:42,112
SOME PEOPLE WITH DOWN SYNDROME,

3565
02:17:42,112 --> 02:17:42,880
SO WE'RE RANDOMIZING

3566
02:17:42,880 --> 02:17:44,181
PARTICIPANTS TO THE THREE ARMS,

3567
02:17:44,181 --> 02:17:48,419
THEY DO KNOW WHAT THEY ARE

3568
02:17:48,419 --> 02:17:48,652
GETTING.

3569
02:17:48,652 --> 02:17:49,987
THERE'S A DELAYED TREATMENT

3570
02:17:49,987 --> 02:17:50,955
GROUP.

3571
02:17:50,955 --> 02:17:53,257
THE WHOLE POINT HERE IS TO

3572
02:17:53,257 --> 02:17:56,660
ARRIVE TO A PERSONALIZED

3573
02:17:56,660 --> 02:17:59,797
MEDICINE APPROACH, WHO WOULD

3574
02:17:59,797 --> 02:18:02,132
BENEFIT THE MOST FROM WHICH

3575
02:18:02,132 --> 02:18:02,399
MEDICINE?

3576
02:18:02,399 --> 02:18:04,802
WE KNOW OF PARTICIPANTS THAT

3577
02:18:04,802 --> 02:18:06,737
BENEFITED FROM EACH AND THAT

3578
02:18:06,737 --> 02:18:07,738
HAVEN'T BENEFITED FROM EACH.

3579
02:18:07,738 --> 02:18:09,907
WHAT ARE THE CHARACTERISTICS

3580
02:18:09,907 --> 02:18:16,280
THAT PREDICT A GOOD RESPONSE,

3581
02:18:16,280 --> 02:18:17,915
BIOMARKERS TO HELP PARTICIPANTS,

3582
02:18:17,915 --> 02:18:21,719
SPECIFIC CONDITIONS.

3583
02:18:21,719 --> 02:18:25,789
IN CONCLUSION, INTERFERON

3584
02:18:25,789 --> 02:18:28,192
HYPERACTIVITY CAUSES ISSUES,

3585
02:18:28,192 --> 02:18:30,027
AUTOIMMUNE DISORDERS OBVIOUSLY,

3586
02:18:30,027 --> 02:18:33,664
ALSO RECOMPLICATION FROM LUNG

3587
02:18:33,664 --> 02:18:38,936
INFECTION, AND MORE TANTALIZING

3588
02:18:38,936 --> 02:18:43,407
CONTRIBUTING TO NEUROLOGIC

3589
02:18:43,407 --> 02:18:47,478
ASPECTS, LEADING TO FIRST INKIND

3590
02:18:47,478 --> 02:18:48,679
CLINICAL TRIALS, RESTORING

3591
02:18:48,679 --> 02:18:50,681
IMMUNE BALANCE COULD HAVE

3592
02:18:50,681 --> 02:18:57,454
BENEFITS IN THIS POPULATION. 

3593
02:18:57,454 --> 02:18:58,122
MANY QUESTIONS, LONG-TERM

3594
02:18:58,122 --> 02:18:59,390
SAFETY, WHAT ARE POSSIBLE

3595
02:18:59,390 --> 02:19:02,126
BENEFITS, HOW MUCH MAY HAVE AN

3596
02:19:02,126 --> 02:19:02,893
IMMUNE BASIS?

3597
02:19:02,893 --> 02:19:06,196
HOW EARLY SHOULD WE START THIS

3598
02:19:06,196 --> 02:19:06,463
TREATMENT?

3599
02:19:06,463 --> 02:19:08,699
IS TREATMENT EVEN POSSIBLE?

3600
02:19:08,699 --> 02:19:10,234
DR. BIANCHI WAS VERY

3601
02:19:10,234 --> 02:19:13,437
ENTHUSIASTIC ABOUT THE CONCEPT.

3602
02:19:13,437 --> 02:19:15,472
PRENATAL TREATMENT.

3603
02:19:15,472 --> 02:19:17,274
SHOULD EVERYONE WITH DOWN

3604
02:19:17,274 --> 02:19:19,877
SYNDROME BE TREATED OR WITH

3605
02:19:19,877 --> 02:19:21,412
OBVIOUS AUTOIMMUNE DIAGNOSIS, A

3606
02:19:21,412 --> 02:19:23,914
LOT OF RESEARCH AHEAD.

3607
02:19:23,914 --> 02:19:25,149
I PRESENTED WORK FROM A HUNDRED

3608
02:19:25,149 --> 02:19:26,250
INDIVIDUALS, IF I WROTE THEM ALL

3609
02:19:26,250 --> 02:19:27,451
DOWN YOU WOULDN'T BE ABLE TO

3610
02:19:27,451 --> 02:19:28,118
READ IT.

3611
02:19:28,118 --> 02:19:32,790
I'LL TAKE A MOMENT TO

3612
02:19:32,790 --> 02:19:34,224
ACKNOWLEDGE THE PROGRAM

3613
02:19:34,224 --> 02:19:36,093
LEADERSHIP, ALL RESEARCH

3614
02:19:36,093 --> 02:19:42,099
PARTICIPANTS AND FAMILIES, MANY

3615
02:19:42,099 --> 02:19:44,535
WONDERFUL COLLABORATORS, THE

3616
02:19:44,535 --> 02:19:45,736
"INCLUDE" PROJECT AND

3617
02:19:45,736 --> 02:19:47,371
PHILANTHROPIC PARTNERS.

3618
02:19:47,371 --> 02:19:51,442
I HOPE THERE'S TIMES FOR CREST

3619
02:19:51,442 --> 02:19:55,079
QUESTIONS AND CRITICISMS. 

3620
02:19:55,079 --> 02:19:56,580
>> THAT WAS OUTSTANDING.

3621
02:19:56,580 --> 02:19:58,882
THANK YOU SO MUCH.

3622
02:19:58,882 --> 02:20:00,217
IT'S A TRANSFORMATIVE PROGRAM

3623
02:20:00,217 --> 02:20:03,787
AND I THINK JUST REALLY

3624
02:20:03,787 --> 02:20:04,221
DEMONSTRATES THE KEY

3625
02:20:04,221 --> 02:20:05,589
CONTRIBUTIONS OF EACH OF THE

3626
02:20:05,589 --> 02:20:06,790
COMPONENTS OF THE "INCLUDE"

3627
02:20:06,790 --> 02:20:08,092
PROGRAM AND ALSO THE CLEAR

3628
02:20:08,092 --> 02:20:10,527
BENEFITS OF THE TEAM SCIENCE

3629
02:20:10,527 --> 02:20:11,528
YOU'VE USED.

3630
02:20:11,528 --> 02:20:19,303
LET ME OPEN TO QUESTIONS FROM

3631
02:20:19,303 --> 02:20:25,509
THE COUNCIL.

3632
02:20:25,509 --> 02:20:28,045
RAISE YOUR HAND SO I CAN SEE OR

3633
02:20:28,045 --> 02:20:33,517
COME OFF MUTE AND PUT YOUR VIDEO

3634
02:20:33,517 --> 02:20:40,057
ON IF YOU HAVE A QUESTION.

3635
02:20:40,057 --> 02:20:43,127
ARE YOU SEEING HANDS?

3636
02:20:43,127 --> 02:20:47,164
I'M NOT SEEING ANY. 

3637
02:20:47,164 --> 02:20:49,533
HERE WE GO.

3638
02:20:49,533 --> 02:20:50,134
DR. JABS?

3639
02:20:50,134 --> 02:20:52,970
>>  YEAH, THAT WAS
MARVELOUS.

3640
02:20:52,970 --> 02:20:53,971
THAT'S VERY EXCITING.

3641
02:20:53,971 --> 02:20:57,775
CAN I ASK YOU, DID YOU SEE AN

3642
02:20:57,775 --> 02:21:01,178
AGE DEPENDENT EFFECT WITH YOUR

3643
02:21:01,178 --> 02:21:02,713
CLINICAL TRIAL?

3644
02:21:02,713 --> 02:21:05,649
>>  WE DID NOT.

3645
02:21:05,649 --> 02:21:07,751
INTERFERON HYPERACTIVITY OCCURS

3646
02:21:07,751 --> 02:21:08,719
ACROSS THE LIFESPAN.

3647
02:21:08,719 --> 02:21:10,921
IT STARTS AS EARLY AS WE CAN

3648
02:21:10,921 --> 02:21:14,992
MEASURE IT, IN YOUNG INFANTS.

3649
02:21:14,992 --> 02:21:16,827
THERE IS AN ASPECT OF

3650
02:21:16,827 --> 02:21:18,562
INFLAMMATION OF DOWN SYNDROME

3651
02:21:18,562 --> 02:21:20,230
THAT'S AGE DEPENDENT, I WOULD

3652
02:21:20,230 --> 02:21:23,634
SAY MINOR ASPECT. 

3653
02:21:23,634 --> 02:21:25,035
WE ALL DEVELOP SO-CALLED INFLAME

3654
02:21:25,035 --> 02:21:26,570
AGING AS WE AGE.

3655
02:21:26,570 --> 02:21:29,173
WHAT WE DO OBSERVE IS THAT THE

3656
02:21:29,173 --> 02:21:31,141
BENEFIT OF THE MEDICINE, THIS IS

3657
02:21:31,141 --> 02:21:35,312
PROBABLY TRUE FOR BOTH THE SKIN

3658
02:21:35,312 --> 02:21:37,281
CONDITIONS AND REGRESSION, THE

3659
02:21:37,281 --> 02:21:40,217
EFFECT IS GREATER WHEN THE

3660
02:21:40,217 --> 02:21:41,652
TREATMENT OCCURS EARLY, RIGHT?

3661
02:21:41,652 --> 02:21:43,721
IF MANY YEARS HAVE GONE BY SINCE

3662
02:21:43,721 --> 02:21:44,822
THE ONSET OF SYMPTOMS, THE

3663
02:21:44,822 --> 02:21:47,324
MEDICINE MAY HAVE A HARDER TIME

3664
02:21:47,324 --> 02:21:47,991
PROVIDING BENEFIT.

3665
02:21:47,991 --> 02:21:52,262
BUT AS OF THIS POINT WE DON'T

3666
02:21:52,262 --> 02:21:54,131
HAVE ANY OBVIOUS AGE-DEPENDENT

3667
02:21:54,131 --> 02:21:55,866
EFFECTS.

3668
02:21:55,866 --> 02:21:59,403
>> THANK YOU. 

3669
02:21:59,403 --> 02:22:09,780
>> OTHER QUESTIONS? 

3670
02:22:19,723 --> 02:22:19,857
OKAY.

3671
02:22:19,857 --> 02:22:21,391
I WILL ACKNOWLEDGE THIS IS A

3672
02:22:21,391 --> 02:22:23,160
MAJOR ADVANCE, I REALLY DO

3673
02:22:23,160 --> 02:22:25,562
APPRECIATE THE FACT THAT HAVING

3674
02:22:25,562 --> 02:22:27,765
WATCHED THIS TALK NOW IN TWO

3675
02:22:27,765 --> 02:22:30,501
FORMS A LITTLE BIT TWICE, I WILL

3676
02:22:30,501 --> 02:22:31,902
SAY JUST THE LEVEL OF

3677
02:22:31,902 --> 02:22:34,304
INTEGRATION THAT YOU ALL HAVE

3678
02:22:34,304 --> 02:22:36,073
HAD AND ABILITY TO CONDUCT

3679
02:22:36,073 --> 02:22:37,608
TRIALS HAS BEEN TRANSFORMATIVE

3680
02:22:37,608 --> 02:22:38,809
AND I LOOK FORWARD TO SEEING

3681
02:22:38,809 --> 02:22:40,110
WHAT YOU AND YOUR COLLEAGUES

3682
02:22:40,110 --> 02:22:42,079
WILL BE DOING MOVING FORWARD.

3683
02:22:42,079 --> 02:22:44,715
I KNOW THAT DR. BHATTACHARYA HAS

3684
02:22:44,715 --> 02:22:46,683
BECOME FAMILIAR WITH THIS

3685
02:22:46,683 --> 02:22:48,552
PROJECT AND SO HE HAS RECEIVED A

3686
02:22:48,552 --> 02:22:50,754
BRIEFING AND HAS SEEN ADVANCES,

3687
02:22:50,754 --> 02:22:52,523
ALSO FELT IT WAS REALLY

3688
02:22:52,523 --> 02:22:53,023
IMPACTFUL.

3689
02:22:53,023 --> 02:22:56,760
THANK YOU FOR ALL YOU'RE DOING.

3690
02:22:56,760 --> 02:22:57,427
>> THANK YOU.

3691
02:22:57,427 --> 02:23:00,697
>> SO, NOW I WANT TO THANK
DR.

3692
02:23:00,697 --> 02:23:02,132
ESPINOSA, ALSO MOVE NOW BECAUSE

3693
02:23:02,132 --> 02:23:04,234
FOR THOSE FAMILIAR WITH OUR

3694
02:23:04,234 --> 02:23:06,303
COUNCIL, YOU KNOW THAT WE

3695
02:23:06,303 --> 02:23:07,704
REGULARLY FEATURE A SEGMENT

3696
02:23:07,704 --> 02:23:09,473
CALLED VOICE OF THE PARTICIPANT

3697
02:23:09,473 --> 02:23:10,874
WHICH GIVES A CHANCE TO HEAR

3698
02:23:10,874 --> 02:23:13,510
FROM THOSE WHO HAD PERSONAL

3699
02:23:13,510 --> 02:23:15,379
EXPERIENCES RELATED TO RESEARCH

3700
02:23:15,379 --> 02:23:18,015
NICHD FUNDS, AND TODAY WE

3701
02:23:18,015 --> 02:23:20,083
WELCOME MISS ANGELA LOMBARDO AND

3702
02:23:20,083 --> 02:23:20,751
MISS LINDA ROAN.

3703
02:23:20,751 --> 02:23:23,453
ANGELA IS A PARENT OF ADULT SON

3704
02:23:23,453 --> 02:23:25,556
WITH DOWN SYNDROME AND

3705
02:23:25,556 --> 02:23:26,056
AUTOIMMUNE CONDITION WHO

3706
02:23:26,056 --> 02:23:27,858
PARTICIPATED IN CLINICAL TRIALS.

3707
02:23:27,858 --> 02:23:32,296
LINDA ROAN IS COMMUNITY LIAISON,

3708
02:23:32,296 --> 02:23:34,731
BUT HERE AS A PARENT OF ADULT

3709
02:23:34,731 --> 02:23:37,134
DAUGHTER WITH AUTOIMMUNE SKIN

3710
02:23:37,134 --> 02:23:38,569
CONDITION AND DOWN SYNDROME

3711
02:23:38,569 --> 02:23:39,436
REGRESSION DISORDER WHO

3712
02:23:39,436 --> 02:23:41,205
BENEFITED FROM HER PARTICIPATION

3713
02:23:41,205 --> 02:23:42,406
IN RESEARCH TRIALS.

3714
02:23:42,406 --> 02:23:44,341
I WANT TO SAY THANK YOU FOR

3715
02:23:44,341 --> 02:23:46,443
JOINING US TODAY.

3716
02:23:46,443 --> 02:23:49,379
WE'LL START WITH THE LOMBARDO

3717
02:23:49,379 --> 02:23:49,746
FAMILY.

3718
02:23:49,746 --> 02:23:51,148
ANGELA, IF YOU WOULD START FOR

3719
02:23:51,148 --> 02:23:52,683
US WE WOULD APPRECIATE IT.

3720
02:23:52,683 --> 02:23:54,685
THANK YOU FOR JOINING TODAY.

3721
02:23:54,685 --> 02:23:55,552
>> OF COURSE.

3722
02:23:55,552 --> 02:24:00,123
THANK YOU FOR HAVING US.

3723
02:24:00,123 --> 02:24:03,961
I WANT TO TELL YOU ABOUT ISAIAH,

3724
02:24:03,961 --> 02:24:05,929
AND ABOUT OUR EXPERIENCES AND

3725
02:24:05,929 --> 02:24:07,397
HISTORY WITH SKIN ISSUES AND OUR

3726
02:24:07,397 --> 02:24:09,867
PARTICIPATION IN THE CLINICAL

3727
02:24:09,867 --> 02:24:13,904
TRIALS WITH DR. ESPINOSA AND

3728
02:24:13,904 --> 02:24:14,771
TEAM.

3729
02:24:14,771 --> 02:24:17,407
HISTORY, 29 YEARS OLD, BORN 2

3730
02:24:17,407 --> 02:24:26,917
1/2 MONTHS  PREMATURE. 

3731
02:24:26,917 --> 02:24:29,453
HE HAD HIRSCHBERG DISEASE,

3732
02:24:29,453 --> 02:24:30,520
PERMANENT COLOSTOMY BAG, A SMALL

3733
02:24:30,520 --> 02:24:31,955
HOLE IN THE HEART WENT AWAY BY

3734
02:24:31,955 --> 02:24:33,490
AGE 3.

3735
02:24:33,490 --> 02:24:37,661
MOST OF HIS LIFE WAS COLOSTOMY

3736
02:24:37,661 --> 02:24:38,762
AND G.I. ISSUES.

3737
02:24:38,762 --> 02:24:40,964
IN HIGH SCHOOL THINGS CHANGED.

3738
02:24:40,964 --> 02:24:42,599
WE NOTICED HIS SKIN STARTED TO

3739
02:24:42,599 --> 02:24:45,869
CHANGE A LOT IN HIGH SCHOOL.

3740
02:24:45,869 --> 02:24:49,006
HE HAD REALLY BAD ECZEMA.

3741
02:24:49,006 --> 02:24:51,341
HE HAD PATCHES OF HAIR THAT

3742
02:24:51,341 --> 02:24:54,611
STARTED TO BE GONE, QUARTER-SIZE

3743
02:24:54,611 --> 02:24:57,247
PATCHES THAT STARTED TO GO AWAY

3744
02:24:57,247 --> 02:24:58,649
AND STARTED GETTING THESE BOILS

3745
02:24:58,649 --> 02:25:02,719
BUT THEY WERE ABSCESSES THAT HE

3746
02:25:02,719 --> 02:25:04,688
WOULD GET OFTEN.

3747
02:25:04,688 --> 02:25:07,424
ISAIAH HAS BEEN EMPLOYED SINCE A

3748
02:25:07,424 --> 02:25:09,059
JUNIOR IN HIGH SCHOOL, WAS VERY

3749
02:25:09,059 --> 02:25:11,128
BUSY IN HIS LIFE.

3750
02:25:11,128 --> 02:25:13,764
HE'S DANCED, HE WAS IN HORSEBACK

3751
02:25:13,764 --> 02:25:15,532
RIDING, HE WAS DOING BASKETBALL.

3752
02:25:15,532 --> 02:25:17,601
I KEPT HIM VERY ACTIVE IN HIS

3753
02:25:17,601 --> 02:25:18,335
COMMUNITY.

3754
02:25:18,335 --> 02:25:20,904
BUT IN HIGH SCHOOL HE STOPPED

3755
02:25:20,904 --> 02:25:21,972
HORSEBACK RIDING BECAUSE OF

3756
02:25:21,972 --> 02:25:24,374
MULTIPLE SURGERIES TO HIS BUM

3757
02:25:24,374 --> 02:25:25,375
FOR THE CYSTS THAT WOULD DEVELOP

3758
02:25:25,375 --> 02:25:26,476
ON HIS BUM.

3759
02:25:26,476 --> 02:25:30,380
HE WOULD MISS TIME FROM SCHOOL

3760
02:25:30,380 --> 02:25:31,715
BECAUSE HE COULDN'T SIT IN A

3761
02:25:31,715 --> 02:25:32,683
CHAIR WITHOUT PAIN.

3762
02:25:32,683 --> 02:25:34,885
HE WOULD MISS TIME FROM SCHOOL

3763
02:25:34,885 --> 02:25:38,722
BECAUSE IT HURT TO MOVE HIS ARM.

3764
02:25:38,722 --> 02:25:40,123
ISAIAH NEVER REALLY COMPLAINED

3765
02:25:40,123 --> 02:25:41,992
ABOUT WHAT WAS HAPPENING BECAUSE

3766
02:25:41,992 --> 02:25:43,961
HE BECAME AFRAID OF THE

3767
02:25:43,961 --> 02:25:48,165
TREATMENTS OF THE PROBLEM.

3768
02:25:48,165 --> 02:25:52,703
SO HE'S HAD A GAZILLION -- THEY

3769
02:25:52,703 --> 02:25:53,804
EXCISED WOUNDS, WOULD CUT HIS

3770
02:25:53,804 --> 02:25:57,341
SKIN OPEN TO DRAIN IT, PACK IT,

3771
02:25:57,341 --> 02:25:58,976
OVER AND OVER AND AND THEN IT

3772
02:25:58,976 --> 02:26:00,844
WOULD GO AWAY AND DOM BACK.

3773
02:26:00,844 --> 02:26:03,680
SO, HE LEARNED TO LIKE PROTECT

3774
02:26:03,680 --> 02:26:05,315
HIMSELF, WHICH WAS GOOD THAT HE

3775
02:26:05,315 --> 02:26:06,616
LEARNED TO PROTECT HIMSELF BUT I

3776
02:26:06,616 --> 02:26:08,285
DIDN'T KNOW THERE WAS PROBLEMS.

3777
02:26:08,285 --> 02:26:10,354
HE WOULD WALK LIKE THIS AND I

3778
02:26:10,354 --> 02:26:12,255
COULD SEE HE WOULDN'T USE HIS

3779
02:26:12,255 --> 02:26:12,456
ARM.

3780
02:26:12,456 --> 02:26:19,563
WHEN YOU LIFTED THE ARM IT WAS

3781
02:26:19,563 --> 02:26:20,897
LIKE A TANGERINE-SIZE ABSCESS,

3782
02:26:20,897 --> 02:26:22,899
SEVEN SURGERIES TO ONE ARMPIT

3783
02:26:22,899 --> 02:26:26,036
AND A FEW TO THE OTHER IN

3784
02:26:26,036 --> 02:26:26,770
ADDITION TO EXCISIONS.

3785
02:26:26,770 --> 02:26:29,106
THEY WENT IN WHEN HE WAS IN HIS

3786
02:26:29,106 --> 02:26:36,046
EARLY 20s AND DID A FULL

3787
02:26:36,046 --> 02:26:37,447
CLEANOUT, TOOK OUT SWEAT GLANDS

3788
02:26:37,447 --> 02:26:41,084
AND WOULD STILL GET ABSCESSES.

3789
02:26:41,084 --> 02:26:46,089
ISAIAH STOPPED  RECREATION

3790
02:26:46,089 --> 02:26:48,091
BECAUSE OF THAT, ECZEMA AND

3791
02:26:48,091 --> 02:26:50,827
PSORIASIS WOULD IMPACT HIM, HE

3792
02:26:50,827 --> 02:26:58,835
ALWAYS HAD FLAKES ON , ITCHING,

3793
02:26:58,835 --> 02:27:00,237
COULDN'T WORK IN THE FOOD

3794
02:27:00,237 --> 02:27:00,670
INDUSTRY.

3795
02:27:00,670 --> 02:27:03,640
PEOPLE WOULD SAY YOU HAVE

3796
02:27:03,640 --> 02:27:03,974
DANDRUFF.

3797
02:27:03,974 --> 02:27:05,175
HE DIDN'T.

3798
02:27:05,175 --> 02:27:06,676
HIS SKIN WOULD FLAKE AND FALL

3799
02:27:06,676 --> 02:27:10,981
OFF A LOT. 

3800
02:27:10,981 --> 02:27:13,617
WE TRIED, I SPENT SO MUCH MONEY

3801
02:27:13,617 --> 02:27:15,585
ON LOTIONS, CREAMS, OINTMENTS,

3802
02:27:15,585 --> 02:27:18,088
GOT AN ADULT PROVIDER FOR

3803
02:27:18,088 --> 02:27:22,359
DERMATOLOGY, THEY GAVE HUMERA

3804
02:27:22,359 --> 02:27:24,327
SHOTS THAT NEVER DID ANYTHING.

3805
02:27:24,327 --> 02:27:27,831
WE WERE AT A LOSS, WOULD KEEP

3806
02:27:27,831 --> 02:27:30,700
BUYING OINTMENTS AND CREAMS THAT

3807
02:27:30,700 --> 02:27:32,536
NEVER IMPROVED HIS SKIN.

3808
02:27:32,536 --> 02:27:34,171
I WORK IN A HOSPITAL IN A DOWN

3809
02:27:34,171 --> 02:27:35,272
SYNDROME PROGRAM.

3810
02:27:35,272 --> 02:27:36,706
WE GO TO NATIONAL CONFERENCES

3811
02:27:36,706 --> 02:27:39,676
EVERY YEAR SO I WAS IN A TALK

3812
02:27:39,676 --> 02:27:42,746
FOR PROFESSIONALS AT THE

3813
02:27:42,746 --> 02:27:44,381
CONFERENCE, AND DR. ESPINOSA

3814
02:27:44,381 --> 02:27:45,482
SHARED HIS STUDY.

3815
02:27:45,482 --> 02:27:47,984
I GOT SIX TEXT MESSAGES FROM

3816
02:27:47,984 --> 02:27:49,419
PEOPLE GOING, GET ISAIAH TO HIM,

3817
02:27:49,419 --> 02:27:51,822
TALK TO THAT MAN ABOUT ISAIAH!

3818
02:27:51,822 --> 02:27:54,558
EVERYONE KNEW HIS HISTORY WITH

3819
02:27:54,558 --> 02:27:55,659
SKIN ISSUES.

3820
02:27:55,659 --> 02:27:57,494
AND I REALLY DIDN'T APPROACH HIM

3821
02:27:57,494 --> 02:27:58,929
BECAUSE I WAS, YOU KNOW, VERY

3822
02:27:58,929 --> 02:28:01,331
AWARE OF THE BOUNDARY OF

3823
02:28:01,331 --> 02:28:03,633
PROFESSIONAL AND PERSONAL USE OF

3824
02:28:03,633 --> 02:28:04,901
WHAT I WAS ACCESSING

3825
02:28:04,901 --> 02:28:07,270
INFORMATION, BUT WE WENT TO THE

3826
02:28:07,270 --> 02:28:09,106
BOOTH AT THE CONFERENCE, AND

3827
02:28:09,106 --> 02:28:12,742
TALKED TO THEM, AND I WAS, TO BE

3828
02:28:12,742 --> 02:28:15,112
HONEST, HESITANT, I'M A SINGLE

3829
02:28:15,112 --> 02:28:16,546
MOM.

3830
02:28:16,546 --> 02:28:17,881
I WORK, ISAIAH WORKS, BUT WE'RE

3831
02:28:17,881 --> 02:28:24,221
NOT ROLLING IN IT LIKE ISAIAH

3832
02:28:24,221 --> 02:28:26,189
WOULD SAY, I COULD NOT AFFORD

3833
02:28:26,189 --> 02:28:27,157
COLORADO, COULD NOT IMAGINE

3834
02:28:27,157 --> 02:28:28,592
TAKING TIME OFF WORK FOR THIS.

3835
02:28:28,592 --> 02:28:30,660
BUT WE LEARNED ABOUT IT AND THE

3836
02:28:30,660 --> 02:28:32,195
TRAVEL WAS COVERED WHICH WAS

3837
02:28:32,195 --> 02:28:32,429
HUGE.

3838
02:28:32,429 --> 02:28:34,931
AND I STILL WAS HESITANT JUST

3839
02:28:34,931 --> 02:28:36,900
BECAUSE IT SEEMED A LOT TO DO

3840
02:28:36,900 --> 02:28:38,768
WITH SUCH BUSY LIVES.

3841
02:28:38,768 --> 02:28:41,404
BUT I THINK WE JUST DECIDED LIKE

3842
02:28:41,404 --> 02:28:43,807
WE HAD TO GO FAR BECAUSE WHAT WE

3843
02:28:43,807 --> 02:28:46,543
WERE DOING WASN'T WORKING AND WE

3844
02:28:46,543 --> 02:28:47,644
WERE DESPERATE TO GIVE HIM

3845
02:28:47,644 --> 02:28:49,813
PEACE, TO HOLD YOUR SON DOWN IN

3846
02:28:49,813 --> 02:28:51,448
THE E.R. WHEN SOMEONE CUTS HIM

3847
02:28:51,448 --> 02:28:53,517
WITHOUT SEDATION AND THEY SAY

3848
02:28:53,517 --> 02:28:55,285
IT'S A LITTLE KNICK, BUT IT'S

3849
02:28:55,285 --> 02:28:57,587
NOT GOOD, NOT HEALTHY FOR HIM TO

3850
02:28:57,587 --> 02:28:59,456
BE TRAUMATIZED LIKE THAT SO

3851
02:28:59,456 --> 02:28:59,789
MUCH.

3852
02:28:59,789 --> 02:29:01,324
SO WE WENT FOR IT.

3853
02:29:01,324 --> 02:29:04,661
AND WE STARTED GOING TO COLORADO

3854
02:29:04,661 --> 02:29:06,363
A LOT.

3855
02:29:06,363 --> 02:29:06,997
IT WAS AMAZING.

3856
02:29:06,997 --> 02:29:09,699
I HAVE BEEN ON ONE SIDE OF

3857
02:29:09,699 --> 02:29:11,034
RESEARCH, NEVER AS A

3858
02:29:11,034 --> 02:29:12,269
PARTICIPANT, BUT WE WERE EXCITED

3859
02:29:12,269 --> 02:29:14,905
TO SEE IF ISAIAH WOULD BENEFIT,

3860
02:29:14,905 --> 02:29:16,740
THRILLED TO THINK THAT US

3861
02:29:16,740 --> 02:29:18,074
PARTICIPATING COULD HELP OTHER

3862
02:29:18,074 --> 02:29:18,308
PEOPLE.

3863
02:29:18,308 --> 02:29:19,910
SO IF WE COULD MAKE A DENT IN

3864
02:29:19,910 --> 02:29:21,244
WHAT THEY WERE LEARNING ABOUT

3865
02:29:21,244 --> 02:29:23,313
AND IF WE COULD HELP THEM GET

3866
02:29:23,313 --> 02:29:24,114
INFORMATION TO HELP FUTURE

3867
02:29:24,114 --> 02:29:26,716
FAMILIES AND FUTURE KIDS TO

3868
02:29:26,716 --> 02:29:27,817
PREVENT WHAT ISAIAH WENT THROUGH

3869
02:29:27,817 --> 02:29:30,520
AND HELP THEM, IT WOULD BE WORTH

3870
02:29:30,520 --> 02:29:32,522
IT FOR US.

3871
02:29:32,522 --> 02:29:33,957
WE TRAVELED TO COLORADO.

3872
02:29:33,957 --> 02:29:36,760
I WAS SO IMPRESSED WITH THE WAY

3873
02:29:36,760 --> 02:29:42,499
THEY SPOKE TO SAY ISAIAH,

3874
02:29:42,499 --> 02:29:43,166
CONSENTING PROCESS, MATERIALS TO

3875
02:29:43,166 --> 02:29:45,101
WORK WITH PEOPLE WITH

3876
02:29:45,101 --> 02:29:49,272
INTELLECTUAL DISABILITIES WAS SO

3877
02:29:49,272 --> 02:29:49,906
IMPRESSIVE.

3878
02:29:49,906 --> 02:29:51,575
SO ISAIAH TOOK THE MEDICINE AT

3879
02:29:51,575 --> 02:29:53,543
THE TRIAL, WE SAW IMPROVEMENTS

3880
02:29:53,543 --> 02:29:53,843
IMMEDIATELY.

3881
02:29:53,843 --> 02:29:55,812
LIKE IT WAS CRAZY.

3882
02:29:55,812 --> 02:29:57,914
I WAS ALWAYS TAKING PICTURES OF

3883
02:29:57,914 --> 02:29:59,683
HIS NECK, IT WAS MIND BLOWING

3884
02:29:59,683 --> 02:30:02,886
HOW MUCH WE SAW IMPROVEMENTS ON

3885
02:30:02,886 --> 02:30:03,520
HIS SKIN.

3886
02:30:03,520 --> 02:30:06,623
HE'LL STILL GET AN ABSCESS HERE

3887
02:30:06,623 --> 02:30:08,024
AND THERE BUT CONTROLLED WITH

3888
02:30:08,024 --> 02:30:09,593
HEAT, OPENS ON ITS OWN BUT

3889
02:30:09,593 --> 02:30:09,826
NOTHING.

3890
02:30:09,826 --> 02:30:12,195
HE HASN'T BEEN CUT SINCE WE

3891
02:30:12,195 --> 02:30:13,296
STARTED THE TRIAL, NO INCISIONS,

3892
02:30:13,296 --> 02:30:17,033
NO NEED BECAUSE IT'S BEEN

3893
02:30:17,033 --> 02:30:17,667
CONTROLLED.

3894
02:30:17,667 --> 02:30:18,668
THE TEAM WAS HELPFUL AND

3895
02:30:18,668 --> 02:30:20,470
OFFERING TO HELP US GET THE

3896
02:30:20,470 --> 02:30:21,838
MEDICINE COVERED.

3897
02:30:21,838 --> 02:30:23,673
WE WERE LUCKY HIS MEDICARE

3898
02:30:23,673 --> 02:30:25,108
COVERED IT FOR US.

3899
02:30:25,108 --> 02:30:26,676
BUT WE LEARNED QUICKLY THE

3900
02:30:26,676 --> 02:30:29,913
CHALLENGES WHEN THEY CHANGED OUR

3901
02:30:29,913 --> 02:30:30,814
MEDICARE PHARMACY PLAN, IT

3902
02:30:30,814 --> 02:30:31,681
WASN'T COVERED.

3903
02:30:31,681 --> 02:30:35,352
SO HE WENT THREE MONTHS WITHOUT

3904
02:30:35,352 --> 02:30:36,419
IT, THEY WANTED $1,800

3905
02:30:36,419 --> 02:30:38,288
CO-PAYMENT FOR EACH MONTH FOR

3906
02:30:38,288 --> 02:30:39,489
THE MEDICINE, I COULDN'T AFFORD

3907
02:30:39,489 --> 02:30:44,961
THAT SO HE CAME OFF OF IT.

3908
02:30:44,961 --> 02:30:47,764
AND WITHIN DAYS HIS SKIN GOT

3909
02:30:47,764 --> 02:30:50,333
PLAQUEY AGAIN, ABSCESSES IN THE

3910
02:30:50,333 --> 02:30:51,968
GROIN AREA, ARMPIT.

3911
02:30:51,968 --> 02:30:54,471
SO, IT WAS FRUSTRATING BUT WE

3912
02:30:54,471 --> 02:30:55,605
CHANGED HIS PHARMACY PLAN,

3913
02:30:55,605 --> 02:30:58,308
WAITED FOR THE TIME PERIOD, AND

3914
02:30:58,308 --> 02:30:59,843
WE WERE FINALLY ABLE TO GET BACK

3915
02:30:59,843 --> 02:31:00,810
ON IT.

3916
02:31:00,810 --> 02:31:02,679
HE'S ON IT.

3917
02:31:02,679 --> 02:31:04,881
IT'S JUST BEEN -- IT'S NIGHT AND

3918
02:31:04,881 --> 02:31:05,248
DAY.

3919
02:31:05,248 --> 02:31:06,650
WE'RE SO GRATEFUL.

3920
02:31:06,650 --> 02:31:08,485
IT'S CHANGED HIS LIFE.

3921
02:31:08,485 --> 02:31:10,020
I'M THANKFUL TO THE NIH,

3922
02:31:10,020 --> 02:31:12,188
"INCLUDE," THANKFUL TO THE

3923
02:31:12,188 --> 02:31:14,958
RESEARCHERS AND DR. ESPINOSA AND

3924
02:31:14,958 --> 02:31:15,158
TEAM.

3925
02:31:15,158 --> 02:31:17,460
I'M THANKFUL I WENT FOR IT.

3926
02:31:17,460 --> 02:31:19,129
SOMETIMES IT'S -- I REALLY

3927
02:31:19,129 --> 02:31:22,065
HESITANT BUT WE WENT FOR IT, AND

3928
02:31:22,065 --> 02:31:24,367
THE BEST DECISION I MADE FOR

3929
02:31:24,367 --> 02:31:26,803
ISAIAH IN A LONG TIME BECAUSE

3930
02:31:26,803 --> 02:31:29,973
IT'S REALLY IMPACTED HOW HE

3931
02:31:29,973 --> 02:31:31,708
LIVES AND IMPACTS HIS WORK.

3932
02:31:31,708 --> 02:31:33,743
AT HIS JOB HE WORKS FULL TIME,

3933
02:31:33,743 --> 02:31:36,246
FIVE DAYS A WEEK AT SHAKE SHACK,

3934
02:31:36,246 --> 02:31:36,846
A RESTAURANT.

3935
02:31:36,846 --> 02:31:38,114
THEY WEAR BLACK T-SHIRTS.

3936
02:31:38,114 --> 02:31:40,116
HIS JOB HAD TO GET A LINT ROLER

3937
02:31:40,116 --> 02:31:42,218
TO RUB ON HIM TO TAKE THE FLAKES

3938
02:31:42,218 --> 02:31:42,652
OFF SOMETIMES.

3939
02:31:42,652 --> 02:31:44,821
IT'S JUST NOT THE WAY IT SHOULD

3940
02:31:44,821 --> 02:31:45,221
BE.

3941
02:31:45,221 --> 02:31:47,457
I'M SO GRATEFUL THAT WE HAVE A

3942
02:31:47,457 --> 02:31:50,627
HANDLE ON IT AND WE WERE

3943
02:31:50,627 --> 02:31:52,395
PROVIDED THE OPPORTUNITY TO

3944
02:31:52,395 --> 02:31:52,629
ATTEND.

3945
02:31:52,629 --> 02:31:54,464
MY SON BENEFITED BUT I'M

3946
02:31:54,464 --> 02:31:56,666
THANKFUL WE WERE PROVIDED THE

3947
02:31:56,666 --> 02:31:57,334
OPPORTUNITY TO HELP WITH

3948
02:31:57,334 --> 02:31:58,635
RESEARCH, TO HELP OTHER FAMILIES

3949
02:31:58,635 --> 02:32:02,706
AND TO CONTRIBUTE TO THE

3950
02:32:02,706 --> 02:32:04,908
RESEARCH. 

3951
02:32:04,908 --> 02:32:11,348
SO I THINK ISAIAH CHANGED,

3952
02:32:11,348 --> 02:32:12,215
CONFIDENCE, SELF-ESTEEM, IT

3953
02:32:12,215 --> 02:32:13,583
IMPACTS YOUR IDENTITY WHEN YOU

3954
02:32:13,583 --> 02:32:16,186
SEE YOURSELF AS DIFFERENT AND

3955
02:32:16,186 --> 02:32:17,921
ARE TREATED DIFFERENTLY BECAUSE

3956
02:32:17,921 --> 02:32:20,357
OF APPEARANCES, HOW HE LOOKED,

3957
02:32:20,357 --> 02:32:24,961
SKIN BEING ITCHY ALL THE TIME.

3958
02:32:24,961 --> 02:32:26,396
I THINK I'M FOREVER GRATEFUL AND

3959
02:32:26,396 --> 02:32:29,999
I THINK IT'S SO IMPORTANT TO

3960
02:32:29,999 --> 02:32:32,402
LOOK AT THE RESEARCH, ALSO

3961
02:32:32,402 --> 02:32:34,604
APPRECIATIVE OF KNOWING THE

3962
02:32:34,604 --> 02:32:36,039
HISTORY AND WHEN DR. ESPINOSA

3963
02:32:36,039 --> 02:32:38,541
SHOWED THE NUMBERS HOW MUCH WAS

3964
02:32:38,541 --> 02:32:40,710
FUNDED PRIOR TO THINK OF THE

3965
02:32:40,710 --> 02:32:42,879
BENEFITS FOR FUTURE BABIES AND

3966
02:32:42,879 --> 02:32:46,716
FOR KIDS BEING BORN NOW WHO HAVE

3967
02:32:46,716 --> 02:32:47,917
BETTER OUTCOMES AND

3968
02:32:47,917 --> 02:32:48,585
TRAJECTORIES, BETTER HEALTH

3969
02:32:48,585 --> 02:32:51,321
BECAUSE OF THE STUFF WE LEARN

3970
02:32:51,321 --> 02:32:52,622
TODAY.

3971
02:32:52,622 --> 02:32:54,424
I'LL STOP.

3972
02:32:54,424 --> 02:32:56,659
OH, ISAIAH WANTED TO SAY

3973
02:32:56,659 --> 02:32:57,727
SOMETHING REAL QUICK.

3974
02:32:57,727 --> 02:32:58,294
>> I HAD.

3975
02:32:58,294 --> 02:33:00,296
I WANTED TO SAY I'M VERY GLAD I

3976
02:33:00,296 --> 02:33:02,699
WAS ABLE TO JOIN THE STUDY IN

3977
02:33:02,699 --> 02:33:03,133
COLORADO.

3978
02:33:03,133 --> 02:33:06,736
I'M SO HAPPY THAT MY SKIN IS

3979
02:33:06,736 --> 02:33:08,705
HEALED.

3980
02:33:08,705 --> 02:33:09,706
I'VE GOTTEN BETTER.

3981
02:33:09,706 --> 02:33:11,775
IT WAS HARD HAVING SO MUCH PAIN

3982
02:33:11,775 --> 02:33:14,644
FROM SKIN ISSUES.

3983
02:33:14,644 --> 02:33:17,614
I LOVE TO WORK, BE WITH MY

3984
02:33:17,614 --> 02:33:17,847
FRIENDS.

3985
02:33:17,847 --> 02:33:19,449
MY SKIN CAUSED A LOT OF

3986
02:33:19,449 --> 02:33:19,983
TROUBLES.

3987
02:33:19,983 --> 02:33:23,319
I WAS EMBARRASSED ABOUT MY SKIN

3988
02:33:23,319 --> 02:33:25,054
SOMETIMES.

3989
02:33:25,054 --> 02:33:26,790
IT MADE ME SAD.

3990
02:33:26,790 --> 02:33:30,059
I'M THANKFUL WE WERE ABLE TO

3991
02:33:30,059 --> 02:33:31,728
PARTICIPATE, SO GLAD I'M TAKING

3992
02:33:31,728 --> 02:33:33,797
MEDICINE TO HELP MY SKIN AND

3993
02:33:33,797 --> 02:33:36,666
KEEP THE PIMPLES AWAY.

3994
02:33:36,666 --> 02:33:38,201
I FEEL PROUD ABLE TO HELP THIS

3995
02:33:38,201 --> 02:33:40,737
RESOURCE TO HELP OTHER PEOPLE

3996
02:33:40,737 --> 02:33:43,339
WITH DOWN SYNDROME AND NOT HAVE

3997
02:33:43,339 --> 02:33:45,508
THE PAIN WITH MY SKIN.

3998
02:33:45,508 --> 02:33:49,412
I LIKE WORKING WITH DR. ESPINOSA

3999
02:33:49,412 --> 02:33:50,780
AND TEAM.

4000
02:33:50,780 --> 02:33:56,619
THEY TALKED TO ME DIRECTLY,

4001
02:33:56,619 --> 02:33:59,322
EXPLAINED EVERYTHING PERFECTLY.

4002
02:33:59,322 --> 02:34:00,757
SO IT MAKES ME FEEL LIKE I'M

4003
02:34:00,757 --> 02:34:02,859
SEEN IN THE WORLD.

4004
02:34:02,859 --> 02:34:05,795
THANK YOU FOR LETTING ME SAY MY

4005
02:34:05,795 --> 02:34:07,764
STORY TODAY.

4006
02:34:07,764 --> 02:34:09,399
>> THANK YOU.

4007
02:34:09,399 --> 02:34:11,167
>> THANK YOU.

4008
02:34:11,167 --> 02:34:13,136
>> THANK YOU ALL SO MUCH
FOR

4009
02:34:13,136 --> 02:34:19,042
SHARING YOUR STORY.

4010
02:34:19,042 --> 02:34:23,413
AND PARTICULARLY ABSOLUTE --

4011
02:34:23,413 --> 02:34:24,414
PARTICULARLY -- ISAIAH, I WANT

4012
02:34:24,414 --> 02:34:26,316
TO THANK YOU FOR SHARING YOUR

4013
02:34:26,316 --> 02:34:30,053
STORY IN SUCH A GREAT WAY.

4014
02:34:30,053 --> 02:34:30,487
>> THANK  YOU.

4015
02:34:30,487 --> 02:34:32,222
>>  WHAT IS THE THING THAT
YOU

4016
02:34:32,222 --> 02:34:33,890
WENT BACK TO FIRST WHEN YOU FELT

4017
02:34:33,890 --> 02:34:35,625
BETTER, WHAT WAS THE THING THAT

4018
02:34:35,625 --> 02:34:38,294
YOU WANTED TO DO MORE THAN

4019
02:34:38,294 --> 02:34:38,561
ANYTHING?

4020
02:34:38,561 --> 02:34:41,664
>>  I WANTED TO GO OUT
WITH MY

4021
02:34:41,664 --> 02:34:42,899
FRIENDS MORE.

4022
02:34:42,899 --> 02:34:47,370
AND I LIKE TO MAKE MORE

4023
02:34:47,370 --> 02:34:48,938
CONNECTIONS WITH MY FRIENDS

4024
02:34:48,938 --> 02:34:51,207
WITHOUT BEING EMBARRASSED ABOUT

4025
02:34:51,207 --> 02:34:51,441
MY SKIN.

4026
02:34:51,441 --> 02:34:53,176
>> THAT SOUNDS LIKE THAT
WAS A

4027
02:34:53,176 --> 02:34:54,644
HUGE IMPACT FOR YOU, SOMETHING

4028
02:34:54,644 --> 02:34:58,114
REALLY MEANINGFUL TO YOU.

4029
02:34:58,114 --> 02:34:58,348
AWESOME.

4030
02:34:58,348 --> 02:35:00,183
>> THANK YOU.

4031
02:35:00,183 --> 02:35:00,550
>> FANTASTIC.

4032
02:35:00,550 --> 02:35:02,352
ONE MORE QUESTION, WHEN YOU SAID

4033
02:35:02,352 --> 02:35:04,888
THAT THE TEAM TALKED TO YOU

4034
02:35:04,888 --> 02:35:08,591
INSTEAD OF YOUR MOM, EXPLAINED

4035
02:35:08,591 --> 02:35:09,792
EVERYTHING TO YOU, WERE THERE

4036
02:35:09,792 --> 02:35:11,327
THINGS THAT YOU WERE WORRIED

4037
02:35:11,327 --> 02:35:13,296
ABOUT OR SCARED OF THAT THEY

4038
02:35:13,296 --> 02:35:15,498
HELPED TO REASSURE YOU WERE

4039
02:35:15,498 --> 02:35:16,466
GOING TO BE OKAY?

4040
02:35:16,466 --> 02:35:18,234
>>  YES.

4041
02:35:18,234 --> 02:35:22,038
I WAS SCARED ABOUT MY HAIR

4042
02:35:22,038 --> 02:35:26,109
BECAUSE WHEN I WAS YOUNGER, I

4043
02:35:26,109 --> 02:35:27,544
HAD BIG AFRO.

4044
02:35:27,544 --> 02:35:27,777
>> OH.

4045
02:35:27,777 --> 02:35:29,512
>> WHEN I WAS 7.

4046
02:35:29,512 --> 02:35:31,180
I WANTED IT BACK.

4047
02:35:31,180 --> 02:35:34,350
>> OH, THERE YOU GO.

4048
02:35:34,350 --> 02:35:42,191
>> BUT NOW IT'S IMPOSSIBLE
TO

4049
02:35:42,191 --> 02:35:44,827
GET IT BACK.

4050
02:35:44,827 --> 02:35:50,967
THE PILLS, I GOT -- YOU HAVE

4051
02:35:50,967 --> 02:35:52,936
SIDE EFFECTS, BUT THAT WASN'T

4052
02:35:52,936 --> 02:35:54,671
THE CASE.

4053
02:35:54,671 --> 02:35:57,941
SO I'M PRETTY GLAD TO BE PART OF

4054
02:35:57,941 --> 02:35:59,175
THE TRIAL.

4055
02:35:59,175 --> 02:36:02,111
DR. ESPINOSA, I LOVE YOU AND YOU

4056
02:36:02,111 --> 02:36:02,312
ROCK!

4057
02:36:02,312 --> 02:36:03,313
>> FANTASTIC.

4058
02:36:03,313 --> 02:36:05,181
WE THINK HE ROCKS TOO.

4059
02:36:05,181 --> 02:36:07,250
WE'RE ON THE SAME PAGE.

4060
02:36:07,250 --> 02:36:07,617
>> THANK YOU.

4061
02:36:07,617 --> 02:36:10,587
>> I WANT TO MAKE SURE I
CHECK,

4062
02:36:10,587 --> 02:36:12,088
WE HAVE ANOTHER 15 MINUTES, IF

4063
02:36:12,088 --> 02:36:16,125
THE OTHER FAMILY HAS JOINED US,

4064
02:36:16,125 --> 02:36:18,861
MISS LINDA ROAN HAS TIME.

4065
02:36:18,861 --> 02:36:20,930
ARE YOU ON, MS. ROAN?

4066
02:36:20,930 --> 02:36:22,406
I DON'T SEE HER ON TEAMS RIGHT
NOW.

4067
02:36:24,947 --> 02:36:26,315
I'M SORRY ABOUT THAT.

4068
02:36:26,315 --> 02:36:29,384
I ENTERED THE MEETING THROUGH A

4069
02:36:29,384 --> 02:36:30,252
DIFFERENT ROUTE.

4070
02:36:30,252 --> 02:36:30,919
>> ALL GOOD.

4071
02:36:30,919 --> 02:36:31,687
>> A DIFFERENT LINK.

4072
02:36:31,687 --> 02:36:32,788
HERE I AM.

4073
02:36:32,788 --> 02:36:34,523
I'M SO SORRY ABOUT THAT.

4074
02:36:34,523 --> 02:36:35,357
MY APOLOGIES.

4075
02:36:35,357 --> 02:36:35,824
>> NO WORRIES.

4076
02:36:35,824 --> 02:36:37,593
>> IT IS SUCH A PLEASURE
AND

4077
02:36:37,593 --> 02:36:39,895
HONOR TO BE HERE TODAY.

4078
02:36:39,895 --> 02:36:42,631
I CAN'T TELL YOU WHAT AN IMPACT

4079
02:36:42,631 --> 02:36:44,733
THE NATIONAL INSTITUTE OF

4080
02:36:44,733 --> 02:36:46,702
HEALTH, "INCLUDE" PROJECT, HAS

4081
02:36:46,702 --> 02:36:49,338
BEEN FOR MY DAUGHTER, BUT FOR MY

4082
02:36:49,338 --> 02:36:49,771
ENTIRE FAMILY.

4083
02:36:49,771 --> 02:36:52,808
WHAT I'D LIKE TO DO TODAY IS

4084
02:36:52,808 --> 02:36:56,311
TELL YOU MY DAUGHTER'S STORY

4085
02:36:56,311 --> 02:36:57,312
ABOUT DOWN SYNDROME REGRESSION

4086
02:36:57,312 --> 02:36:57,746
DISORDER.

4087
02:36:57,746 --> 02:36:59,281
I BELIEVE DANIEL HAS A LITTLE

4088
02:36:59,281 --> 02:37:01,783
FILM, IT'S VERY SHORT, ABOUT A

4089
02:37:01,783 --> 02:37:05,521
MINUTE, THAT SHOWS MY DAUGHTER

4090
02:37:05,521 --> 02:37:06,855
PRE-REGRESSION, DURING

4091
02:37:06,855 --> 02:37:07,523
REGRESSION, AND THEN

4092
02:37:07,523 --> 02:37:07,890
POST-REGRESSION.

4093
02:37:07,890 --> 02:37:10,359
AND IF THERE'S TIME THERE'S A

4094
02:37:10,359 --> 02:37:12,327
COUPLE VIGNETTES AND STORIES TO

4095
02:37:12,327 --> 02:37:14,596
SHARE FROM OTHER FAMILIES THAT

4096
02:37:14,596 --> 02:37:16,465
HAVE LOVED ONES WITH DOWN

4097
02:37:16,465 --> 02:37:17,699
SYNDROME REGRESSION DISORDER.

4098
02:37:17,699 --> 02:37:23,605
BUT LET ME GET STARTED WITH MY

4099
02:37:23,605 --> 02:37:24,706
FAMILY'S STORY.

4100
02:37:24,706 --> 02:37:27,109
MAYA IS 32 YEARS OLD NOW.

4101
02:37:27,109 --> 02:37:29,077
IN 2013, SHE WENT AWAY, WAS

4102
02:37:29,077 --> 02:37:31,079
ROCKING HER LIFE, HAVING A GREAT

4103
02:37:31,079 --> 02:37:31,280
LIFE.

4104
02:37:31,280 --> 02:37:33,482
AND SHE WENT AWAY TO A COLLEGE

4105
02:37:33,482 --> 02:37:35,851
PROGRAM FOR PEOPLE WITH

4106
02:37:35,851 --> 02:37:36,418
INTELLECTUAL DISABILITIES.

4107
02:37:36,418 --> 02:37:39,721
AND WHEN SHE CAME HOME FOR

4108
02:37:39,721 --> 02:37:41,790
THANKSGIVING, WE NOTICED SHE WAS

4109
02:37:41,790 --> 02:37:42,558
NOT HERSELF.

4110
02:37:42,558 --> 02:37:45,928
SHE WAS TALKING TO HERSELF UNDER

4111
02:37:45,928 --> 02:37:49,231
HER BREATH, HAD NO INTEREST IN

4112
02:37:49,231 --> 02:37:50,999
BEING WITH THE FAMILY, JUST NOT

4113
02:37:50,999 --> 02:37:53,402
HERSELF, TALKING LIKE SHE WAS IN

4114
02:37:53,402 --> 02:37:57,105
THIS TV SHOW THAT SHE LOVED.

4115
02:37:57,105 --> 02:37:58,307
CALLED PRETTY LITTLE LIARS, YOU

4116
02:37:58,307 --> 02:38:00,409
MAY REMEMBER IT FROM WAY BACK

4117
02:38:00,409 --> 02:38:00,776
WHEN.

4118
02:38:00,776 --> 02:38:02,945
WE CALLED THE SCHOOL.

4119
02:38:02,945 --> 02:38:05,180
THEY SAID THEY HAD NOT NOTICED

4120
02:38:05,180 --> 02:38:06,548
ANYTHING, SHE HAD BEEN DOING

4121
02:38:06,548 --> 02:38:06,848
GREAT.

4122
02:38:06,848 --> 02:38:08,917
WE DIDN'T SEND HER BACK A COUPLE

4123
02:38:08,917 --> 02:38:09,585
DAYS LATER.

4124
02:38:09,585 --> 02:38:11,220
THE SCHOOL CALLED AND SAID WE'VE

4125
02:38:11,220 --> 02:38:12,854
BEEN CHECKING AROUND, SHE'S BEEN

4126
02:38:12,854 --> 02:38:15,724
STAYING UP ALL NIGHT LONG,

4127
02:38:15,724 --> 02:38:17,025
COPYING FROM HER BOOK, SHE'S

4128
02:38:17,025 --> 02:38:19,428
BEEN COPYING OVER AND OVER.

4129
02:38:19,428 --> 02:38:20,629
SHE'S BEEN MISSING APPOINTMENTS.

4130
02:38:20,629 --> 02:38:23,532
NO, SHE'S NOT BEEN HERSELF.

4131
02:38:23,532 --> 02:38:26,301
WE TOOK HER TO THE CENTER FOR

4132
02:38:26,301 --> 02:38:27,236
DOWN SYNDROME.

4133
02:38:27,236 --> 02:38:28,937
THEY SAID WE DON'T KNOW WHAT

4134
02:38:28,937 --> 02:38:29,504
THIS IS.

4135
02:38:29,504 --> 02:38:38,580
IT DOESN'T HAVE A NAME.

4136
02:38:38,580 --> 02:38:39,548
JANUARY OF 2014.

4137
02:38:39,548 --> 02:38:41,850
WE KNOW IT'S A THING IN DOWN

4138
02:38:41,850 --> 02:38:42,484
SYNDROME.

4139
02:38:42,484 --> 02:38:44,920
WE STARTED WORKING WITH THE

4140
02:38:44,920 --> 02:38:46,455
PSYCHIATRIST HERE IN DENVER,

4141
02:38:46,455 --> 02:38:47,756
PSYCHOTROPIC MEDICINE.

4142
02:38:47,756 --> 02:38:49,191
I DON'T BELIEVE ANYTHING REALLY

4143
02:38:49,191 --> 02:38:51,693
WORKED BECAUSE IT WAS ABOUT 18

4144
02:38:51,693 --> 02:38:52,694
MONTHS BEFORE SHE STARTED

4145
02:38:52,694 --> 02:38:53,562
GETTING BETTER.

4146
02:38:53,562 --> 02:38:55,530
SHE WAS GOOD, REALLY GOOD, FOR

4147
02:38:55,530 --> 02:38:57,833
ABOUT SIX MONTHS.

4148
02:38:57,833 --> 02:39:01,003
AND THEN, WHAM, IN ONE DAY SIX

4149
02:39:01,003 --> 02:39:03,505
MONTHS AFTER SHE HAD GOTTEN MUCH

4150
02:39:03,505 --> 02:39:05,941
BETTER, IN ONE DAY SHE WAS BACK

4151
02:39:05,941 --> 02:39:08,710
TO NOT BEING ABLE TO EVEN SAY

4152
02:39:08,710 --> 02:39:09,745
HER NAME.

4153
02:39:09,745 --> 02:39:12,581
THIS IS A YOUNG WOMAN THAT WAS

4154
02:39:12,581 --> 02:39:14,349
VIBRANT, FULL OF LIFE, DOING

4155
02:39:14,349 --> 02:39:14,650
WELL.

4156
02:39:14,650 --> 02:39:16,952
WE TRIED ALL THE THINGS THAT WE

4157
02:39:16,952 --> 02:39:19,521
HAD DONE THE FIRST TIME BUT TO

4158
02:39:19,521 --> 02:39:20,822
NO AVAIL, NOTHING WORKED.

4159
02:39:20,822 --> 02:39:23,792
SHE WAS GETTING WORSE AND WORSE

4160
02:39:23,792 --> 02:39:24,893
AND WORSE.

4161
02:39:24,893 --> 02:39:27,296
SHE WAS -- I WAS HAND FEEDING

4162
02:39:27,296 --> 02:39:30,032
HER AT THIS POINT.

4163
02:39:30,032 --> 02:39:32,467
NOT TALKING AT ALL.

4164
02:39:32,467 --> 02:39:33,769
AND SO WE -- THE PSYCHIATRIST

4165
02:39:33,769 --> 02:39:37,372
SAID WE HAVE ONE MORE THING WE

4166
02:39:37,372 --> 02:39:38,140
CAN TRY.

4167
02:39:38,140 --> 02:39:40,175
WE THINK IT COULD BE ELECTRIC

4168
02:39:40,175 --> 02:39:44,413
CONVULSIVE THERAPY COULD HELP

4169
02:39:44,413 --> 02:39:45,714
HER.

4170
02:39:45,714 --> 02:39:47,182
NOW 2016, WE TRIED ECT, AND

4171
02:39:47,182 --> 02:39:49,084
WITHIN ONE MONTH SHE WAS BACK TO

4172
02:39:49,084 --> 02:39:51,219
HER OLD SELF, BACK TO HER

4173
02:39:51,219 --> 02:39:51,753
BASELINE SELF.

4174
02:39:51,753 --> 02:39:53,088
ALL WAS GOOD IN THE WORLD.

4175
02:39:53,088 --> 02:39:55,691
LIFE WENT ON.

4176
02:39:55,691 --> 02:39:57,993
SHE GOT A JOB.

4177
02:39:57,993 --> 02:40:00,629
TIME PASSES.

4178
02:40:00,629 --> 02:40:05,100
AND THEN IN 2020, BAM, AGAIN,

4179
02:40:05,100 --> 02:40:06,535
VERY, VERY ILL.

4180
02:40:06,535 --> 02:40:09,037
WE TRIED ALL THE THINGS AGAIN.

4181
02:40:09,037 --> 02:40:11,440
THIS TIME ECT DID NOT TOUCH IT.

4182
02:40:11,440 --> 02:40:13,742
SHE WAS BAD.

4183
02:40:13,742 --> 02:40:16,578
SHE WAS IN DEPENDS, I WAS HAND

4184
02:40:16,578 --> 02:40:18,246
FEEDING HER, I HAD A BUSINESS

4185
02:40:18,246 --> 02:40:19,981
WITH HER FATHER, WE HAD TO SHUT

4186
02:40:19,981 --> 02:40:23,685
THE BUSINESS DOWN BECAUSE IT WAS

4187
02:40:23,685 --> 02:40:26,888
A 24/7 ORDEAL TAKING CARE OF

4188
02:40:26,888 --> 02:40:27,422
HER.

4189
02:40:27,422 --> 02:40:29,624
AND I TALKED TO DR. SCOTTCO, HE

4190
02:40:29,624 --> 02:40:33,462
SAID THERE'S A DOCTOR IN

4191
02:40:33,462 --> 02:40:34,162
CALIFORNIA, DR. JONATHAN

4192
02:40:34,162 --> 02:40:35,864
SANTORO, LOOKING INTO THIS.

4193
02:40:35,864 --> 02:40:38,033
I SUGGEST YOU GO SEE HIM.

4194
02:40:38,033 --> 02:40:40,802
WE WENT TO CALIFORNIA, SAW DR.

4195
02:40:40,802 --> 02:40:44,706
SANTORO, AND HE SAID, YOU KNOW,

4196
02:40:44,706 --> 02:40:47,042
LINDA, HE RAN A LOT OF TESTS,

4197
02:40:47,042 --> 02:40:50,412
YOU SAID, YOU KNOW, I THINK WE

4198
02:40:50,412 --> 02:40:51,613
SHOULD TRY IVIG BUT YOUR

4199
02:40:51,613 --> 02:40:52,647
DAUGHTER HAS HAD THIS, WHATEVER

4200
02:40:52,647 --> 02:40:55,884
THIS IS, I THINK IT COULD BE AN

4201
02:40:55,884 --> 02:40:57,953
INFLAMMATORY PROCESS LIKE AN

4202
02:40:57,953 --> 02:40:58,620
AUTOIMMUNE ENCEPHALITIS.

4203
02:40:58,620 --> 02:41:00,155
WE DON'T KNOW ENOUGH TO SAY FOR

4204
02:41:00,155 --> 02:41:03,091
SURE BUT THAT'S WHAT MY THINKING

4205
02:41:03,091 --> 02:41:03,525
IS.

4206
02:41:03,525 --> 02:41:06,728
WE SHOULD GIVE IVIG A TRY, I'M

4207
02:41:06,728 --> 02:41:08,029
NOT SURE IT'S GOING TO WORK

4208
02:41:08,029 --> 02:41:11,299
BECAUSE SHE'S BEEN SICK FOR SO

4209
02:41:11,299 --> 02:41:11,533
LONG.

4210
02:41:11,533 --> 02:41:13,935
WE WENT BACK TO COLORADO, GOT

4211
02:41:13,935 --> 02:41:17,005
THE IVIG, SURE ENOUGH IT DID NOT

4212
02:41:17,005 --> 02:41:17,572
WORK.

4213
02:41:17,572 --> 02:41:19,641
BUT I REMEMBERED THE SCIENTIST

4214
02:41:19,641 --> 02:41:22,944
THAT I HAD TALKED TO IN THE

4215
02:41:22,944 --> 02:41:24,012
EARLY DAYS, THAT FIRST

4216
02:41:24,012 --> 02:41:26,448
REGRESSION, ASKING ME A BUNCH OF

4217
02:41:26,448 --> 02:41:28,884
QUESTIONS ABOUT MAYA'S IMMUNE

4218
02:41:28,884 --> 02:41:29,117
SYSTEM.

4219
02:41:29,117 --> 02:41:30,719
AND THEN I REMEMBERED.

4220
02:41:30,719 --> 02:41:32,821
AND DR. SANTORO WAS MENTIONING

4221
02:41:32,821 --> 02:41:33,789
HER IMMUNE SYSTEM.

4222
02:41:33,789 --> 02:41:37,826
AND SO I WENT, HMM, THESE TWO,

4223
02:41:37,826 --> 02:41:39,060
ONE SCIENTIST, ONE PHYSICIAN,

4224
02:41:39,060 --> 02:41:43,398
THEY NEED TO MEET.

4225
02:41:43,398 --> 02:41:45,600
I INTRODUCED THE TWO GENTLEMAN

4226
02:41:45,600 --> 02:41:47,369
AND THEY COMPARED NOTES AND AS I

4227
02:41:47,369 --> 02:41:48,770
THINK YOU ALL KNOW THEY HAVE

4228
02:41:48,770 --> 02:41:51,573
BEEN WORKING TOGETHER AND NOW

4229
02:41:51,573 --> 02:41:53,608
THERE'S A CLINICAL TRIAL LOOKING

4230
02:41:53,608 --> 02:41:56,745
AT DOWN SYNDROME REGRESSION

4231
02:41:56,745 --> 02:41:57,012
DISORDER.

4232
02:41:57,012 --> 02:42:02,217
AND SO DR. ESPINOSA SAID IS

4233
02:42:02,217 --> 02:42:04,286
THERE ANY CHANCE MAYA HAS AN

4234
02:42:04,286 --> 02:42:05,854
AUTOIMMUNE SKIN CONDITION?

4235
02:42:05,854 --> 02:42:07,923
NO, SHE'S GOT BUMPS THAT SHE

4236
02:42:07,923 --> 02:42:10,091
GETS IN HER GROIN AREA, THEY CAN

4237
02:42:10,091 --> 02:42:13,628
GET REALLY NASTY BUT HER PCP,

4238
02:42:13,628 --> 02:42:16,364
THEY WILL JUST LANCE THEM,

4239
02:42:16,364 --> 02:42:18,800
NOBODY MENTIONED IMMUNE SKIN

4240
02:42:18,800 --> 02:42:19,067
CONDITION.

4241
02:42:19,067 --> 02:42:20,936
HE SAID, HMM, I'D LIKE FOR YOU

4242
02:42:20,936 --> 02:42:23,138
TO SEE ONE OF THE DERMATOLOGISTS

4243
02:42:23,138 --> 02:42:23,872
WE WORK WITH.

4244
02:42:23,872 --> 02:42:25,841
SO WE DID.

4245
02:42:25,841 --> 02:42:27,809
SURE ENOUGH, IT WAS HS.

4246
02:42:27,809 --> 02:42:30,011
HE SAID LET'S GET MAYA IN THIS

4247
02:42:30,011 --> 02:42:30,645
TRIAL.

4248
02:42:30,645 --> 02:42:32,948
SHE QUALIFIES BECAUSE OF HER

4249
02:42:32,948 --> 02:42:36,017
SKIN CONDITION, BUT I HAD THIS

4250
02:42:36,017 --> 02:42:37,886
CURIOSITY, I'M WONDERING IF IT

4251
02:42:37,886 --> 02:42:41,156
MIGHT HELP HER BRAIN TOO.

4252
02:42:41,156 --> 02:42:44,226
SO OH MY GOSH, A GLIMMER OF

4253
02:42:44,226 --> 02:42:44,693
HOPE.

4254
02:42:44,693 --> 02:42:48,296
WE STARTED THE TRIAL, IT WAS A

4255
02:42:48,296 --> 02:42:50,098
16-WEEK TRIAL, SURE ENOUGH

4256
02:42:50,098 --> 02:42:52,367
MAYA'S BRAIN, HER SKIN WAS KIND

4257
02:42:52,367 --> 02:42:55,971
OF HELPED BUT HER BRAIN WAS

4258
02:42:55,971 --> 02:42:57,405
GREATLY HELPED.

4259
02:42:57,405 --> 02:42:59,474
AND SHE STARTED DOING WELL

4260
02:42:59,474 --> 02:42:59,908
AGAIN.

4261
02:42:59,908 --> 02:43:03,411
AND SO SHE NOW -- THAT WAS 2021.

4262
02:43:03,411 --> 02:43:04,746
AND NOW WE'RE IN 2025, THE

4263
02:43:04,746 --> 02:43:06,715
REASON SHE'S NOT HERE TODAY IS

4264
02:43:06,715 --> 02:43:08,450
BECAUSE SHE'S AT WORK.

4265
02:43:08,450 --> 02:43:09,417
SHE HAS TWO JOBS.

4266
02:43:09,417 --> 02:43:10,519
SHE HAS FRIENDS.

4267
02:43:10,519 --> 02:43:13,688
SHE JUST GOT BACK FROM

4268
02:43:13,688 --> 02:43:15,991
CALIFORNIA WITH SOME FRIENDS AND

4269
02:43:15,991 --> 02:43:18,093
HER HOST HOME PROVIDER LIVING --

4270
02:43:18,093 --> 02:43:19,294
JUST DOING GREAT.

4271
02:43:19,294 --> 02:43:21,796
SHE DOES OCCASIONALLY HAVE WHAT

4272
02:43:21,796 --> 02:43:32,274
WE CALL FLARES, BUT WITH THE

4273
02:43:33,808 --> 02:43:34,509
MEDICATION, TOPOCITINIB, ALSO

4274
02:43:34,509 --> 02:43:36,144
LORAZEPAM THAT WE'RE ALSO

4275
02:43:36,144 --> 02:43:38,880
STUDYING IN THE TRIAL, PERHAPS

4276
02:43:38,880 --> 02:43:40,749
AN ECT TREATMENT, SHE'S DOING

4277
02:43:40,749 --> 02:43:42,617
WELL, REALLY, REALLY WELL.

4278
02:43:42,617 --> 02:43:45,687
NOW WE'RE SEVERAL YEARS OUT.

4279
02:43:45,687 --> 02:43:46,988
I'M HOPEFUL THAT THIS WILL

4280
02:43:46,988 --> 02:43:49,391
CONTINUE AND WE HAVE EVERY

4281
02:43:49,391 --> 02:43:53,328
REASON TO BELIEVE THAT IT WILL.

4282
02:43:53,328 --> 02:43:55,764
I'D LIKE -- SEEING IS BETTER

4283
02:43:55,764 --> 02:43:56,831
THAN HEARING.

4284
02:43:56,831 --> 02:43:58,967
IT'S A MINUTE, A VIDEO THAT I'D

4285
02:43:58,967 --> 02:44:06,241
LIKE FOR YOU TO SEE NOW OF MAYA

4286
02:44:06,241 --> 02:44:07,542
PRE-REGRESSION, DURING

4287
02:44:07,542 --> 02:44:09,444
REGRESSION, AND MAYA

4288
02:44:09,444 --> 02:44:09,811
POST-REGRESSION.

4289
02:44:09,811 --> 02:44:12,080
SO, IF YOU COULD PLAY THAT

4290
02:44:12,080 --> 02:44:28,128
VIDEO, I THINK DANIEL HAS IT.
THAT WOULD BE REALLY GREAT. 

4291
02:44:28,128 --> 02:44:30,997
>> SHE HELPS ME UNDERSTAND
MUCH

4292
02:44:30,997 --> 02:44:31,932
BETTER.

4293
02:44:31,932 --> 02:44:42,275
HI, IT'S ME, MIAH. 

4294
02:44:48,648 --> 02:44:51,852
>> MIAH, DO YOU KNOW YOUR
DAD'S

4295
02:44:51,852 --> 02:44:56,089
NAME? 

4296
02:44:56,089 --> 02:45:02,996
CAN YOU TELL ME YOUR SISTERS'

4297
02:45:02,996 --> 02:45:03,430
NAMES?

4298
02:45:03,430 --> 02:45:06,166
WHAT HAVE YOU BEEN TALKING

4299
02:45:06,166 --> 02:45:16,309
ABOUT? 

4300
02:45:19,646 --> 02:45:22,716
>> A LOT OF TIMES, I
WANTED TO

4301
02:45:22,716 --> 02:45:23,350
LIKE DANCE MORE.

4302
02:45:23,350 --> 02:45:23,783
♪

4303
02:45:23,783 --> 02:45:28,955
I ALSO LIKE TO DESIGN CLOTHES. 

4304
02:45:28,955 --> 02:45:31,024
I HAVE A JOB.

4305
02:45:31,024 --> 02:45:38,298
WAG'S CONSIGNMENT, IT'S LIKE A

4306
02:45:38,298 --> 02:45:38,765
FASHION EXTRAVAGANZA.

4307
02:45:38,765 --> 02:45:48,842
♪ 

4308
02:45:50,310 --> 02:45:53,613
>> I THINK YOU CAN SEE WHY
WE'RE

4309
02:45:53,613 --> 02:45:55,448
SO, SO THANKFUL FOR THESE

4310
02:45:55,448 --> 02:45:57,117
CLINICAL TRIALS, AND THE PEOPLE

4311
02:45:57,117 --> 02:45:58,351
LIKE YOU THAT MAKE IT POSSIBLE.

4312
02:45:58,351 --> 02:46:00,387
I DON'T THINK I HAVE VERY MUCH

4313
02:46:00,387 --> 02:46:02,923
TIME LEFT BUT I'D LIKE TO LEAVE

4314
02:46:02,923 --> 02:46:04,224
YOU WITH ONE LITTLE STORY THAT'S

4315
02:46:04,224 --> 02:46:06,092
NOT ABOUT MY FAMILY.

4316
02:46:06,092 --> 02:46:07,294
IT'S ABOUT ANOTHER FAMILY,

4317
02:46:07,294 --> 02:46:16,937
SOMEONE I TALKED TO RECENTLY. 

4318
02:46:16,937 --> 02:46:19,539
SO AT THE CRNICH INSTITUTE I WAS

4319
02:46:19,539 --> 02:46:21,207
CONTACTED BY A FAMILY A COUPLE

4320
02:46:21,207 --> 02:46:22,075
MONTHS AGO.

4321
02:46:22,075 --> 02:46:23,610
THEIR DAUGHTER, 15 YEARS OLD,

4322
02:46:23,610 --> 02:46:25,245
STARTED TO SHOW SIGNS OF

4323
02:46:25,245 --> 02:46:26,880
REGRESSION, THIS WAS IN

4324
02:46:26,880 --> 02:46:27,147
LOUISIANA.

4325
02:46:27,147 --> 02:46:29,449
THEY HAD NO IDEA WHAT REGRESSION

4326
02:46:29,449 --> 02:46:29,616
WAS.

4327
02:46:29,616 --> 02:46:30,884
OF COURSE, THEY FREAKED OUT.

4328
02:46:30,884 --> 02:46:31,785
WHAT'S GOING ON?

4329
02:46:31,785 --> 02:46:34,387
THEY TOOK HER TO THE HOSPITAL.

4330
02:46:34,387 --> 02:46:35,722
EMERGENCY ROOM.

4331
02:46:35,722 --> 02:46:36,790
AND THE EMERGENCY ROOM THREW

4332
02:46:36,790 --> 02:46:38,491
THEIR HANDS UP IN THE AIR, WE

4333
02:46:38,491 --> 02:46:40,727
DON'T KNOW WHAT THIS IS.

4334
02:46:40,727 --> 02:46:42,462
YOU KNOW, MAYBE IT'S DOWN

4335
02:46:42,462 --> 02:46:44,564
SYNDROME, WE DON'T KNOW.

4336
02:46:44,564 --> 02:46:45,498
SENT HER HOME.

4337
02:46:45,498 --> 02:46:47,400
A WEEK OR TWO WENT BY.

4338
02:46:47,400 --> 02:46:49,135
SHE WAS GETTING WORSE, WHICH

4339
02:46:49,135 --> 02:46:50,136
SOMETIMES WITH REGRESSION

4340
02:46:50,136 --> 02:46:52,639
DISORDER IT'S FAIRLY QUICK

4341
02:46:52,639 --> 02:46:54,174
ONSET, PEOPLE CAN DETERIORATE

4342
02:46:54,174 --> 02:46:54,507
QUICKLY.

4343
02:46:54,507 --> 02:46:56,242
SHE WAS GETTING WORSE AND WORSE

4344
02:46:56,242 --> 02:46:57,043
AND WORSE.

4345
02:46:57,043 --> 02:46:59,446
THEY WENT BACK TO THE EMERGENCY

4346
02:46:59,446 --> 02:47:01,214
ROOM, THIS TIME A DIFFERENT

4347
02:47:01,214 --> 02:47:02,515
HOSPITAL, A LARGER HOSPITAL.

4348
02:47:02,515 --> 02:47:05,251
AND THEY WENT BACK AND THEIR

4349
02:47:05,251 --> 02:47:07,887
DAUGHTER WAS, YOU KNOW, ADMITTED

4350
02:47:07,887 --> 02:47:10,523
INTO THE HOSPITAL.

4351
02:47:10,523 --> 02:47:11,791
THERE WAS A HOSPITALIST, SOME

4352
02:47:11,791 --> 02:47:13,026
DOCTOR WORKING IN THE HOSPITAL,

4353
02:47:13,026 --> 02:47:15,662
WHO SAID I DON'T KNOW WHAT THIS

4354
02:47:15,662 --> 02:47:17,030
IS.

4355
02:47:17,030 --> 02:47:21,701
BUT WENT INTO THE LITERATURE AND

4356
02:47:21,701 --> 02:47:25,105
STARTED SEEING ARTICLES FROM THE

4357
02:47:25,105 --> 02:47:26,406
RESEARCH ABOUT AUTOIMMUNITY IN

4358
02:47:26,406 --> 02:47:31,011
DOWN SYNDROME, ARTICLES FROM DR.

4359
02:47:31,011 --> 02:47:32,112
SANTORO ABOUT REGRESSION

4360
02:47:32,112 --> 02:47:34,280
DISORDER, OTHER PEOPLE IN THE

4361
02:47:34,280 --> 02:47:34,581
LITERATURE.

4362
02:47:34,581 --> 02:47:35,949
SO IN THE HOSPITAL, THIS YOUNG

4363
02:47:35,949 --> 02:47:39,352
WOMAN WHO HAD ONLY BEEN SICK FOR

4364
02:47:39,352 --> 02:47:43,289
A FEW WEEKS GOT IVIG, LEFT THE

4365
02:47:43,289 --> 02:47:45,992
HOSPITAL MUCH BETTER, HAS HAD

4366
02:47:45,992 --> 02:47:47,427
MORE IVIG, IS TOTALLY FINE.

4367
02:47:47,427 --> 02:47:49,462
WE'RE TALKING THIS JUST TOOK A

4368
02:47:49,462 --> 02:47:53,033
MATTER OF A FEW WEEKS OR A MONTH

4369
02:47:53,033 --> 02:47:57,137
OR SOMETHING, COUPLE MONTHS

4370
02:47:57,137 --> 02:47:58,438
VERSUS FOR SOME FAMILIES KIDS

4371
02:47:58,438 --> 02:48:00,073
HAVE BEEN SICK FOR DECADES, THEY

4372
02:48:00,073 --> 02:48:01,808
HAVE GIVEN UP.

4373
02:48:01,808 --> 02:48:04,210
THEIR KIDS LIVE IN BED.

4374
02:48:04,210 --> 02:48:07,514
SO IN A SHORT PERIOD OF TIME BIG

4375
02:48:07,514 --> 02:48:09,683
GAINS ARE BEING MADE AND

4376
02:48:09,683 --> 02:48:11,017
FAMILIES HAVE HOPE.

4377
02:48:11,017 --> 02:48:13,520
AND WE JUST CAN'T THANK YOU

4378
02:48:13,520 --> 02:48:13,753
ENOUGH.

4379
02:48:13,753 --> 02:48:16,589
THANK YOU.

4380
02:48:16,589 --> 02:48:19,025
>> WELL, FIRST OFF, THANK
YOU

4381
02:48:19,025 --> 02:48:20,427
FOR COMING FIRST TO OUR COUNCIL

4382
02:48:20,427 --> 02:48:22,395
AND SHARING YOUR STORY AND YOUR

4383
02:48:22,395 --> 02:48:23,930
DAUGHTER'S STORY, AND THE STORY

4384
02:48:23,930 --> 02:48:26,132
OF OTHER FAMILIES.

4385
02:48:26,132 --> 02:48:29,035
ALSO THANK YOU FOR GETTING US

4386
02:48:29,035 --> 02:48:30,170
THE VIDEO.

4387
02:48:30,170 --> 02:48:31,204
IT'S TRANSFORMATIVE.

4388
02:48:31,204 --> 02:48:35,408
IF WE CAN, IF THE LOMBARDO

4389
02:48:35,408 --> 02:48:39,713
FAMILY AND MISS ROAN I'D LOVE TO

4390
02:48:39,713 --> 02:48:42,982
LET THE COUNCIL ASK ONE OR TWO

4391
02:48:42,982 --> 02:48:43,917
QUESTIONS, DO WE HAVE ANY

4392
02:48:43,917 --> 02:48:47,153
COUNCIL MEMBERS THAT WANT TO

4393
02:48:47,153 --> 02:48:48,755
ASK -- WE CAN DO TWO QUESTIONS,

4394
02:48:48,755 --> 02:48:50,890
I'M GOING TO ASK THE TEAM TO BE

4395
02:48:50,890 --> 02:48:56,596
FASTER. 

4396
02:48:56,596 --> 02:48:58,298
THIS IS SO IMPACTFUL.

4397
02:48:58,298 --> 02:49:00,834
>> YES, THANK YOU SO MUCH
TO

4398
02:49:00,834 --> 02:49:02,936
BOTH OF YOU FOR SHARING YOUR

4399
02:49:02,936 --> 02:49:06,106
STORY AND YOUR JOURNEY WITH

4400
02:49:06,106 --> 02:49:08,074
PARTICIPATING IN THE TRIAL.

4401
02:49:08,074 --> 02:49:10,176
IT'S VERY INSPIRING TO ALL OF US

4402
02:49:10,176 --> 02:49:14,214
TO HEAR FROM FAMILIES LIKE

4403
02:49:14,214 --> 02:49:14,481
YOURSELF.

4404
02:49:14,481 --> 02:49:17,784
WHAT ADVICE WOULD YOU GIVE TO

4405
02:49:17,784 --> 02:49:20,987
RESEARCHERS LIKE US BASED ON

4406
02:49:20,987 --> 02:49:22,856
YOUR EXPERIENCE TO ENROLL

4407
02:49:22,856 --> 02:49:28,795
FAMILIARS WITH DOWN SYNDROME OR

4408
02:49:28,795 --> 02:49:30,897
SIMILAR CONDITIONS IN RESEARCH?

4409
02:49:30,897 --> 02:49:34,234
>>  I GUESS I'LL GO FIRST.

4410
02:49:34,234 --> 02:49:37,103
ANGELA, YOU CAN GO.

4411
02:49:37,103 --> 02:49:39,072
MY ADVICE TO RESEARCHERS WOULD

4412
02:49:39,072 --> 02:49:41,040
BE DON'T GIVE UP.

4413
02:49:41,040 --> 02:49:42,208
DON'T GIVE UP!

4414
02:49:42,208 --> 02:49:43,109
STAY WITH IT!

4415
02:49:43,109 --> 02:49:45,945
STAY WITH IT!

4416
02:49:45,945 --> 02:49:48,348
KEEP WORKING HARD!

4417
02:49:48,348 --> 02:49:50,116
YOU KNOW, I ALSO THINK THAT

4418
02:49:50,116 --> 02:49:52,051
PIECE OF ADVICE ABOUT SPEAKING

4419
02:49:52,051 --> 02:49:55,221
TO THE PERSON WITH THE

4420
02:49:55,221 --> 02:49:58,758
DISABILITY INCLUDING THEM IN THE

4421
02:49:58,758 --> 02:50:00,260
CONVERSATION IS HUGELY

4422
02:50:00,260 --> 02:50:00,860
IMPORTANT.

4423
02:50:00,860 --> 02:50:02,695
AND, YOU KNOW, PUBLISH, PUBLISH,

4424
02:50:02,695 --> 02:50:03,897
PUBLISH BECAUSE IT'S THOSE

4425
02:50:03,897 --> 02:50:08,134
ARTICLES THAT MAKE THE

4426
02:50:08,134 --> 02:50:09,903
DIFFERENCE.

4427
02:50:09,903 --> 02:50:11,571
>> YEAH, MY VOICE IS
TERRIBLE.

4428
02:50:11,571 --> 02:50:14,274
I WAS GOING TO SAY THAT I THINK

4429
02:50:14,274 --> 02:50:18,111
IT'S DEFINITELY HOW DO YOU

4430
02:50:18,111 --> 02:50:18,812
ACCOMMODATE YOUR MATERIALS TO

4431
02:50:18,812 --> 02:50:20,180
SHARE AND HOW YOU TO TALK TO

4432
02:50:20,180 --> 02:50:21,848
PEOPLE AND GIVE THEM THE

4433
02:50:21,848 --> 02:50:23,249
MATERIALS AND INFORMATION.

4434
02:50:23,249 --> 02:50:28,488
IT'S IMPORTANT TO LIKE WE  WOULD

4435
02:50:28,488 --> 02:50:34,961
HAVE NOT BEEN IN THE  TRIAL

4436
02:50:34,961 --> 02:50:36,229
WITHOUT COSTS BEING INCLUDES,

4437
02:50:36,229 --> 02:50:41,467
HOW DO WE BREAK DOWN BARRIERS

4438
02:50:41,467 --> 02:50:42,635
ACCESS OR WE WOULD HAVE NEVER

4439
02:50:42,635 --> 02:50:43,837
BEEN ABLE TO DO IT.

4440
02:50:43,837 --> 02:50:44,370
>> THANK YOU.

4441
02:50:44,370 --> 02:50:45,939
ANY OTHER QUESTIONS FROM THE

4442
02:50:45,939 --> 02:50:46,239
COUNCIL?

4443
02:50:46,239 --> 02:50:52,278
WE CAN DO ONE MORE.

4444
02:50:52,278 --> 02:50:54,914
>> SO I WANT TO THANK ALL
OF YOU

4445
02:50:54,914 --> 02:50:59,085
SO MUCH FOR JOINING US THIS

4446
02:50:59,085 --> 02:50:59,719
AFTERNOON.

4447
02:50:59,719 --> 02:51:00,820
PRESENTATIONS ARE HONESTLY WHAT

4448
02:51:00,820 --> 02:51:03,223
KEEP ME GOING FROM QUARTER TO

4449
02:51:03,223 --> 02:51:03,690
QUARTER.

4450
02:51:03,690 --> 02:51:06,059
AND REALLY DO MAKE SUCH AN

4451
02:51:06,059 --> 02:51:11,431
IMPACT ON OUR STAFF. 

4452
02:51:11,431 --> 02:51:13,633
THIS HAS BEEN COMPLETELY MISSION

4453
02:51:13,633 --> 02:51:14,534
CONCORDANT, SOMETHING WE DO

4454
02:51:14,534 --> 02:51:16,369
EVERY DAY, ONE OF THE FOUNDING

4455
02:51:16,369 --> 02:51:18,905
THINGS THAT IS REALLY DEAR TO US

4456
02:51:18,905 --> 02:51:20,139
AT NICHD.

4457
02:51:20,139 --> 02:51:21,941
SO DR. ESPINOSA, YOUR CONTINUED

4458
02:51:21,941 --> 02:51:23,343
WORK AND PARTNERSHIP, ESPECIALLY

4459
02:51:23,343 --> 02:51:25,645
WITH THE COMMUNITY THROUGH THE

4460
02:51:25,645 --> 02:51:27,947
DS CONNECT PLATFORM AND THEN I

4461
02:51:27,947 --> 02:51:33,453
WILL SAY TO MISS ROAN AND MISS

4462
02:51:33,453 --> 02:51:35,388
LOMBARDO, THANK YOU FOR SHARING.

4463
02:51:35,388 --> 02:51:36,623
AND ISAIAH, THANK YOU FOR BEING

4464
02:51:36,623 --> 02:51:39,459
WITH US AND SHARING YOUR STORY

4465
02:51:39,459 --> 02:51:41,427
SO WELL AND AUTHENTICALLY.

4466
02:51:41,427 --> 02:51:41,995
>> THANK YOU.

4467
02:51:41,995 --> 02:51:43,296
>> I SUPER APPRECIATE IT.

4468
02:51:43,296 --> 02:51:44,998
I HOPE YOU GET GREAT TIME WITH

4469
02:51:44,998 --> 02:51:47,667
YOUR FRIENDS, AS MUCH AS YOU CAN

4470
02:51:47,667 --> 02:51:48,868
OUTSIDE OF WORK.

4471
02:51:48,868 --> 02:51:50,303
>> YES, YES.

4472
02:51:50,303 --> 02:51:51,704
THANK YOU.

4473
02:51:51,704 --> 02:51:52,071
>> FANTASTIC.

4474
02:51:52,071 --> 02:51:53,039
THANK YOU ALL SO MUCH FOR

4475
02:51:53,039 --> 02:51:54,474
JOINING US.

4476
02:51:54,474 --> 02:51:55,575
WE REALLY APPRECIATE IT.

4477
02:51:55,575 --> 02:51:57,143
>> THANKS FOR HAVING US.

4478
02:51:57,143 --> 02:51:58,745
>> THANK YOU.

4479
02:51:58,745 --> 02:51:59,646
>> THANK YOU.

4480
02:51:59,646 --> 02:52:03,983
>> THANK YOU.

4481
02:52:03,983 --> 02:52:12,325
>> I'LL TURN IT BACK OVER
TO DR.

4482
02:52:12,325 --> 02:52:12,558
RASOOLY.

4483
02:52:12,558 --> 02:52:15,061
>> FIVE CONCEPTS FOR YOUR

4484
02:52:15,061 --> 02:52:17,063
CONSIDERATION NOW.

4485
02:52:17,063 --> 02:52:18,197
FOR EACH CONCEPT, I'LL ASK THE

4486
02:52:18,197 --> 02:52:20,667
STAFF TO PROVIDE A BRIEF

4487
02:52:20,667 --> 02:52:23,036
OVERVIEW OF THE INITIATIVE AND

4488
02:52:23,036 --> 02:52:26,806
ASK COUNCIL FOR DISCUSSION

4489
02:52:26,806 --> 02:52:27,273
REGARDING THE CONCEPT.

4490
02:52:27,273 --> 02:52:29,442
AT THE CONCLUSION OF DISCUSSION

4491
02:52:29,442 --> 02:52:31,010
I'LL ASK COUNCIL MEMBERS WHETHER

4492
02:52:31,010 --> 02:52:33,746
THEY CONCUR OR NOT WITH THE

4493
02:52:33,746 --> 02:52:36,516
PROPOSED INITIATIVE.

4494
02:52:36,516 --> 02:52:39,252
JUST TO REMIND THE COUNCIL

4495
02:52:39,252 --> 02:52:40,486
MEMBERS, CONCEPTS REPRESENT

4496
02:52:40,486 --> 02:52:43,723
EARLY PLANNING STAGES FOR

4497
02:52:43,723 --> 02:52:47,026
FUNDING INITIATIVES, SUCH AS

4498
02:52:47,026 --> 02:52:48,428
REQUESTS FOR APPLICATIONS,

4499
02:52:48,428 --> 02:52:50,763
CONTRACT SOLICITATION.

4500
02:52:50,763 --> 02:52:53,066
ACCORDING TO LAW, EXPERTS IN THE

4501
02:52:53,066 --> 02:52:56,102
FIELD WHICH ARE YOU, THE COUNCIL

4502
02:52:56,102 --> 02:52:57,303
MEASURES, MUST APPROVE A CONCEPT

4503
02:52:57,303 --> 02:53:00,073
BEFORE IT CAN BE ANNOUNCED OR

4504
02:53:00,073 --> 02:53:01,574
DEVELOPED INTO A FUNDING

4505
02:53:01,574 --> 02:53:01,908
INITIATIVE.

4506
02:53:01,908 --> 02:53:03,409
COUNCIL MEMBERS ARE ASKED TO

4507
02:53:03,409 --> 02:53:07,313
REVIEW AND COMMENT ON AND

4508
02:53:07,313 --> 02:53:08,815
APPROVE THE CONCEPT'S SCIENTIFIC

4509
02:53:08,815 --> 02:53:09,816
MERIT AND PRIORITY.

4510
02:53:09,816 --> 02:53:11,918
PLEASE REMEMBER NOT ALL CONCEPTS

4511
02:53:11,918 --> 02:53:15,421
ARE DEVELOPED INTO FORMAL

4512
02:53:15,421 --> 02:53:15,755
INITIATIVES.

4513
02:53:15,755 --> 02:53:19,058
EVEN IF THE CONCEPT LEADS TO

4514
02:53:19,058 --> 02:53:25,498
INITIATIVE DETAILS MAY DIFFER

4515
02:53:25,498 --> 02:53:28,267
FROM THE ORIGINAL PROPOSAL.

4516
02:53:28,267 --> 02:53:31,104
THEY ARE PRESENTED IN OPEN

4517
02:53:31,104 --> 02:53:33,339
SESSION, DO NOT HAVE DETAILS,

4518
02:53:33,339 --> 02:53:36,509
THERE'S NO, SO TO SPEAK, INSIDE

4519
02:53:36,509 --> 02:53:36,809
INFORMATION.

4520
02:53:36,809 --> 02:53:40,680
COUNCIL MEMBERS ARE PERMITTED TO

4521
02:53:40,680 --> 02:53:42,315
EVEN APPLY FOR FUTURE

4522
02:53:42,315 --> 02:53:43,750
INITIATIVE.

4523
02:53:43,750 --> 02:53:51,858
HAVING SAID THAT, LET'S HEAR

4524
02:53:51,858 --> 02:53:55,028
FROM DR. PILEGGI, NATIONAL

4525
02:53:55,028 --> 02:53:58,164
PEDIATRIC MEDICAL DEVICE

4526
02:53:58,164 --> 02:53:58,564
ECOSYSTEM.

4527
02:53:58,564 --> 02:53:59,365
>> THANK YOU.

4528
02:53:59,365 --> 02:54:01,801
PROGRAM SEEKS COUNCIL APPROVAL

4529
02:54:01,801 --> 02:54:04,303
FOR INITIATIVE, NATIONAL

4530
02:54:04,303 --> 02:54:06,906
PEDIATRIC MEDICAL DEVICE

4531
02:54:06,906 --> 02:54:07,807
ECOSYSTEM, MEDICAL TECHNOLOGIES

4532
02:54:07,807 --> 02:54:09,876
ARE TRANSFORMING HEALTH CARE,

4533
02:54:09,876 --> 02:54:11,411
DRIVING WIDESPREAD ADOPTION OF

4534
02:54:11,411 --> 02:54:15,815
DEVICES TO IMPROVE ACCESS TO

4535
02:54:15,815 --> 02:54:17,450
CARE, DIAGNOSIS, MONITORING AND

4536
02:54:17,450 --> 02:54:18,684
TREATMENT LEADING TO ENHANCED

4537
02:54:18,684 --> 02:54:20,953
CLINICAL OUTCOMES, QUALITY OF

4538
02:54:20,953 --> 02:54:22,822
LIFE, REDUCED HEALTHCARE COSTS.

4539
02:54:22,822 --> 02:54:31,330
THE NUMBERS OF MEDICAL DEVICES

4540
02:54:31,330 --> 02:54:34,734
ARE GROWING.

4541
02:54:34,734 --> 02:54:39,005
PEDIATRIC LABELING REMAINS

4542
02:54:39,005 --> 02:54:39,872
STAGNANT, DESPITE DEMAND,

4543
02:54:39,872 --> 02:54:42,809
LIMITED SOLUTIONS ARE AVAILABLE.

4544
02:54:42,809 --> 02:54:49,282
OR ADULT DEVICES USED OFF LABEL

4545
02:54:49,282 --> 02:54:50,683
DISPOSING CHILDREN.

4546
02:54:50,683 --> 02:54:55,955
MED TECH INNOVATION IS GIVEN BY

4547
02:54:55,955 --> 02:54:57,356
SMALL BUSINESSES VULNERABLE TO

4548
02:54:57,356 --> 02:54:58,925
FAILURE DUE TO REGULATORY

4549
02:54:58,925 --> 02:55:00,960
PATHWAYS AND MARKET ENTRY.

4550
02:55:00,960 --> 02:55:03,062
PEDIATRIC DEVICE DEVELOPMENT IS

4551
02:55:03,062 --> 02:55:04,931
PERCEIVED AS HIGH RISK EFFORT

4552
02:55:04,931 --> 02:55:09,869
WITH LOW AND UNCLEAR RETURN ON

4553
02:55:09,869 --> 02:55:10,403
INVESTMENT.

4554
02:55:10,403 --> 02:55:13,606
INNOVATION IS HINDERED BY LACK

4555
02:55:13,606 --> 02:55:16,242
OF INFRASTRUCTURE TO SUPPORT

4556
02:55:16,242 --> 02:55:19,645
PEDIATRIC SPECIFIC DEVICE

4557
02:55:19,645 --> 02:55:22,782
DEVELOPMENT, VALIDATION,

4558
02:55:22,782 --> 02:55:23,549
REGULATORY APPROVAL,

4559
02:55:23,549 --> 02:55:25,084
REIMBURSEMENT, THIS WILL ENABLE

4560
02:55:25,084 --> 02:55:29,789
NICHD AND NIH LEADERSHIP IN

4561
02:55:29,789 --> 02:55:30,556
IMPLEMENTATION OF

4562
02:55:30,556 --> 02:55:32,325
MULTI-STAKEHOLDER ENDEAVOR TO

4563
02:55:32,325 --> 02:55:38,865
STRENGTHEN THE MEDICAL DEVICE

4564
02:55:38,865 --> 02:55:39,832
ECOSYSTEM, ENHANCING

4565
02:55:39,832 --> 02:55:45,438
AVAILABILITY OF PEDIATRIC SAFE

4566
02:55:45,438 --> 02:55:46,639
MEDICAL DEVICES, IMPROVE

4567
02:55:46,639 --> 02:55:47,974
LONG-TERM HEALTH OUTCOMES FOR

4568
02:55:47,974 --> 02:55:51,244
AMERICAN CHILDREN, ALIGNS WITH

4569
02:55:51,244 --> 02:55:53,779
NIH AND HHS PRIORITIES,

4570
02:55:53,779 --> 02:55:56,816
EXECUTIVE ORDER ESTABLISHING

4571
02:55:56,816 --> 02:55:59,886
PRESIDENT'S MAKE AMERICA HEALTHY

4572
02:55:59,886 --> 02:56:01,487
AGAIN COMMISSION, AND NICHD

4573
02:56:01,487 --> 02:56:04,023
STRATEGIC PLAN 2025 FOSTERING

4574
02:56:04,023 --> 02:56:05,791
SAFE AND EFFECTIVE THERAPEUTICS

4575
02:56:05,791 --> 02:56:07,326
FOR PREGNANT WOMEN, LACTATING

4576
02:56:07,326 --> 02:56:11,364
WOMEN, CHILDREN, AND PEOPLE WITH

4577
02:56:11,364 --> 02:56:11,697
DISABILITIES.

4578
02:56:11,697 --> 02:56:13,332
THANK YOU.

4579
02:56:13,332 --> 02:56:14,433
>> THANK YOU.

4580
02:56:14,433 --> 02:56:21,541
ARE THERE ANY QUESTIONS OR

4581
02:56:21,541 --> 02:56:28,981
COMMENTS ABOUT THIS CONCEPT?

4582
02:56:28,981 --> 02:56:31,517
>> THANK YOU.

4583
02:56:31,517 --> 02:56:34,353
THANKS FOR THE CONCEPT.

4584
02:56:34,353 --> 02:56:37,190
THANK YOU, REBEKAH, FOR THE

4585
02:56:37,190 --> 02:56:37,757
INSTRUCTIONS.

4586
02:56:37,757 --> 02:56:41,093
I WONDER, IS THERE A ROLE TO

4587
02:56:41,093 --> 02:56:43,996
ALSO STUDY DEVICES IN PREGNANCY,

4588
02:56:43,996 --> 02:56:49,168
SIMILAR ISSUES AND USING DEVICES

4589
02:56:49,168 --> 02:56:51,103
THAT ARE APPROVED, HAVE NORMS

4590
02:56:51,103 --> 02:56:54,607
FOR PREGNANT WOMEN, MIGHT BE A

4591
02:56:54,607 --> 02:56:56,275
NICE ADDITIONAL PIECE TO ADD, I

4592
02:56:56,275 --> 02:57:01,514
WONDER IF YOU COULD COMMENT ON

4593
02:57:01,514 --> 02:57:03,516
THAT.

4594
02:57:03,516 --> 02:57:04,383
>> SO, THIS SPECIFIC
CONCEPT

4595
02:57:04,383 --> 02:57:06,252
FALLS IN THE PEDIATRIC

4596
02:57:06,252 --> 02:57:06,586
APPLICATIONS.

4597
02:57:06,586 --> 02:57:09,422
AS YOU KNOW, PEDIATRIC IS FROM

4598
02:57:09,422 --> 02:57:12,925
DAY ZERO THROUGH THE DAY BEFORE

4599
02:57:12,925 --> 02:57:16,195
THE 22nd BIRTHDAY BASED ON HOW

4600
02:57:16,195 --> 02:57:20,466
FDA REGULATES MEDICAL DEVICES. 

4601
02:57:20,466 --> 02:57:24,937
THERE IS DEFINITELY VALUE IN

4602
02:57:24,937 --> 02:57:28,241
EXTENDING THE DEVELOPMENTAL

4603
02:57:28,241 --> 02:57:31,077
DEVICES TO EARLIER, DURING

4604
02:57:31,077 --> 02:57:33,279
PREGNANCY, BEYOND THE SCOPE OF

4605
02:57:33,279 --> 02:57:35,014
THIS INITIATIVE BUT DEFINITELY

4606
02:57:35,014 --> 02:57:40,386
AN AREA WHERE WE'RE VERY

4607
02:57:40,386 --> 02:57:43,022
INTERESTED AN MAYBE DR. CERNICH

4608
02:57:43,022 --> 02:57:43,623
CAN CHIME IN.

4609
02:57:43,623 --> 02:57:46,726
>> WHAT WE'VE TRIED TO DO
IS

4610
02:57:46,726 --> 02:57:48,060
WE'VE DONE INITIATIVES RECENTLY,

4611
02:57:48,060 --> 02:57:50,162
BOTH IN POSTPARTUM PHASE BUT

4612
02:57:50,162 --> 02:57:54,734
ALSO WE'VE DONE SOME WORK FOR

4613
02:57:54,734 --> 02:57:57,136
STILL BIRTH PREVENTION IN

4614
02:57:57,136 --> 02:58:05,211
PREGNANCY, AND REGULAR WORK IN

4615
02:58:05,211 --> 02:58:06,078
NATOLOGY DEVICE, SBIR, STTR, WE

4616
02:58:06,078 --> 02:58:08,381
HAVE THAT IN THE PORTFOLIO AND

4617
02:58:08,381 --> 02:58:10,883
CAN TAKE THE NOTE THAT WE SHOULD

4618
02:58:10,883 --> 02:58:13,552
CONSIDER HOW THIS INTERACTS WITH

4619
02:58:13,552 --> 02:58:20,960
THE PREGNANCY PERIOD PRIOR TO

4620
02:58:20,960 --> 02:58:21,427
PEDIATRICS.

4621
02:58:21,427 --> 02:58:26,132
>> THANK YOU. 

4622
02:58:26,132 --> 02:58:28,768
>> ANY OTHER COMMENTS,

4623
02:58:28,768 --> 02:58:29,101
QUESTIONS?

4624
02:58:29,101 --> 02:58:30,836
HEARING NONE, LET'S HAVE A

4625
02:58:30,836 --> 02:58:35,107
MOTION FOR APPROVAL OF THIS

4626
02:58:35,107 --> 02:58:36,842
CONCEPT.

4627
02:58:36,842 --> 02:58:40,046
>> MOTION TO APPROVE. 

4628
02:58:40,046 --> 02:58:48,354
>> AND A SECOND? 

4629
02:58:48,354 --> 02:58:48,888
>> SECOND.

4630
02:58:48,888 --> 02:58:50,690
>> THANK YOU VERY MUCH.

4631
02:58:50,690 --> 02:58:52,325
REMEMBER, I'M GOING TO ASK YOU

4632
02:58:52,325 --> 02:58:54,927
TO VOTE BY RAISING YOUR HAND. 

4633
02:58:54,927 --> 02:58:57,863
ALL IN FAVOR?

4634
02:58:57,863 --> 02:59:00,633
 

4635
02:59:00,633 --> 02:59:01,067
OKAY.

4636
02:59:01,067 --> 02:59:02,501
I SEE EVERYONE'S VOTED IN FAVOR

4637
02:59:02,501 --> 02:59:06,205
SO I WON'T ASK FOR OPPOSED OR

4638
02:59:06,205 --> 02:59:06,505
ABSTENTIONS.

4639
02:59:06,505 --> 02:59:09,508
WE'LL MOVE NOW TO THE NEXT

4640
02:59:09,508 --> 02:59:09,875
CONCEPT.

4641
02:59:09,875 --> 02:59:11,377
THANK YOU.

4642
02:59:11,377 --> 02:59:14,347
DR. KAREN WINIER, PEDIATRIC

4643
02:59:14,347 --> 02:59:15,648
GROWTH AND NUTRITION BRANCH,

4644
02:59:15,648 --> 02:59:17,850
PEDIATRIC SCIENTIST DEVELOPMENT

4645
02:59:17,850 --> 02:59:18,718
PROGRAM.

4646
02:59:18,718 --> 02:59:19,285
DR. WINIER?

4647
02:59:19,285 --> 02:59:21,020
>>  THANK YOU.

4648
02:59:21,020 --> 02:59:22,888
THE PEDIATRIC GROWTH AND

4649
02:59:22,888 --> 02:59:25,424
NUTRITION BRANCH SEEKS COUNCIL

4650
02:59:25,424 --> 02:59:28,561
APPROVAL FOR RENEWAL OF THE

4651
02:59:28,561 --> 02:59:31,964
PEDIATRIC SCIENTIST DEVELOPMENT

4652
02:59:31,964 --> 02:59:32,732
PROGRAM, AN NICHD-FUNDED

4653
02:59:32,732 --> 02:59:34,800
MENTORED TRAINING PROGRAM FOR

4654
02:59:34,800 --> 02:59:35,267
PEDIATRICIANS.

4655
02:59:35,267 --> 02:59:38,671
THE PROGRAM IS DESIGNED TO

4656
02:59:38,671 --> 02:59:40,072
ENHANCE RESEARCH SKILLS AND

4657
02:59:40,072 --> 02:59:42,475
PROVIDE A BRIDGE BETWEEN FORMAL

4658
02:59:42,475 --> 02:59:46,645
RESEARCH TRAINING AND RECEIPT OF

4659
02:59:46,645 --> 02:59:48,381
INDEPENDENT GRANTS.

4660
02:59:48,381 --> 02:59:50,483
FIRST ESTABLISHED IN RESPONSE TO

4661
02:59:50,483 --> 02:59:52,685
CONCERNS EXPRESSED BY PEDIATRIC

4662
02:59:52,685 --> 02:59:54,086
LEADERSHIP THAT ACADEMIC

4663
02:59:54,086 --> 02:59:59,825
PEDIATRICSES WERE NOT TRAINED TO

4664
02:59:59,825 --> 03:00:02,128
COMPETE FOR NIH GRANTS.

4665
03:00:02,128 --> 03:00:03,863
AS MODERN TECHNOLOGY EVOLVED,

4666
03:00:03,863 --> 03:00:06,499
THIS PROGRAM CONTINUES TO

4667
03:00:06,499 --> 03:00:08,401
FULFILL AND ONGOING NEED IN

4668
03:00:08,401 --> 03:00:11,237
TODAY'S HIGHLY COMPETITIVE

4669
03:00:11,237 --> 03:00:13,005
RESEARCH ENVIRONMENT.

4670
03:00:13,005 --> 03:00:13,706
THIS PROGRAM PROVIDES

4671
03:00:13,706 --> 03:00:15,841
PEDIATRICIANS WHO ARE IN THE

4672
03:00:15,841 --> 03:00:18,677
EARLY STAGES OF THEIR CAREERS

4673
03:00:18,677 --> 03:00:21,647
WITH STATE-OF-THE-ART TRAINING,

4674
03:00:21,647 --> 03:00:25,050
EDUCATION, AND MENTORING.

4675
03:00:25,050 --> 03:00:27,119
THE PSDP RECRUITS PEDIATRICIANS

4676
03:00:27,119 --> 03:00:29,422
IN THE RESIDENCY, TO PARTICIPATE

4677
03:00:29,422 --> 03:00:32,057
IN THIS PROGRAM DURING

4678
03:00:32,057 --> 03:00:32,825
SUBSPECIALTY FELLOWSHIP

4679
03:00:32,825 --> 03:00:33,092
TRAINING.

4680
03:00:33,092 --> 03:00:36,328
OVER THE DURATION OF THE

4681
03:00:36,328 --> 03:00:39,732
PROGRAM, THE PSDP ADDED

4682
03:00:39,732 --> 03:00:40,666
SUBSTANTIALLY TO THE

4683
03:00:40,666 --> 03:00:41,300
PHYSICIAN-SCIENTIST WORK FORCE,

4684
03:00:41,300 --> 03:00:43,803
THERE IS BEEN A TWO-FOLD

4685
03:00:43,803 --> 03:00:44,770
INCREASE IN SCHOLAR APPLICANTS

4686
03:00:44,770 --> 03:00:47,973
IN THE PAST FIVE YEARS.

4687
03:00:47,973 --> 03:00:51,911
SINCE ITS INCEPTION, THE PSDP

4688
03:00:51,911 --> 03:00:57,383
FUNDED 235 PEDIATRICIAN SCHOLARS

4689
03:00:57,383 --> 03:00:59,118
LOCATED IN 48 PEDIATRIC

4690
03:00:59,118 --> 03:01:00,119
DEPARTMENTS, MENTORED BY

4691
03:01:00,119 --> 03:01:01,987
ESTABLISHED SENIOR INVESTIGATORS

4692
03:01:01,987 --> 03:01:06,058
WHO SUPPORT SCHOLAR PROJECTS

4693
03:01:06,058 --> 03:01:08,994
RELEVANT TO THE ADVANCEMENTS OF

4694
03:01:08,994 --> 03:01:10,095
CHILD HEALTH.

4695
03:01:10,095 --> 03:01:14,800
MAJORITY OF PAST SCHOLARS HAVE

4696
03:01:14,800 --> 03:01:16,335
BEEN NIH-FUNDED PRINCIPAL

4697
03:01:16,335 --> 03:01:17,436
INVESTIGATORS, 90% REMAIN IN

4698
03:01:17,436 --> 03:01:20,039
ACADEMIC PEDIATRICIAN, MANY HAVE

4699
03:01:20,039 --> 03:01:22,341
ANSWERED THROUGH ACADEMIC LADDER

4700
03:01:22,341 --> 03:01:25,277
AND HOLD LEADERSHIP POSITIONS.

4701
03:01:25,277 --> 03:01:25,978
THANK YOU.

4702
03:01:25,978 --> 03:01:27,279
>> THANK YOU.

4703
03:01:27,279 --> 03:01:29,815
ARE THERE COMMENTS OR QUESTIONS

4704
03:01:29,815 --> 03:01:33,519
ABOUT THIS INITIATIVE?

4705
03:01:33,519 --> 03:01:33,853
DR. MALDONADO?

4706
03:01:33,853 --> 03:01:36,255
>>  THANK YOU SO MUCH.

4707
03:01:36,255 --> 03:01:38,090
THIS IS A REALLY WONDERFUL

4708
03:01:38,090 --> 03:01:40,526
CONCEPT BUT I GUESS I'M

4709
03:01:40,526 --> 03:01:41,293
CONFUSED.

4710
03:01:41,293 --> 03:01:43,696
TELL ME ABOUT HOW THIS IS COMING

4711
03:01:43,696 --> 03:01:45,130
ABOUT GIVEN THAT WE UNDERSTAND

4712
03:01:45,130 --> 03:01:52,037
THAT THIS PROGRAM IS RECENTLY

4713
03:01:52,037 --> 03:01:52,304
TERMINATED

4714
03:01:52,304 --> 03:01:54,006
>> ORDER TO RECOMPETE
ANYTHING,

4715
03:01:54,006 --> 03:01:57,276
IN ORDER TO PUBLISH ANY KIND OF

4716
03:01:57,276 --> 03:01:58,711
FUNDING OPPORTUNITY, THERE HAS

4717
03:01:58,711 --> 03:02:02,515
TO BE A VALID CONCEPT CLEARANCE,

4718
03:02:02,515 --> 03:02:07,353
CONCEPT CLEARANCES ARE VALID FOR

4719
03:02:07,353 --> 03:02:10,856
FIVE YEARS.

4720
03:02:10,856 --> 03:02:13,792
>> NEW CONCEPT THEN OR --
AGAIN,

4721
03:02:13,792 --> 03:02:14,994
STILL CONFUSED.

4722
03:02:14,994 --> 03:02:17,663
>> SO THE OLD ONE IS GONE.

4723
03:02:17,663 --> 03:02:19,732
THIS IS A NEW CONCEPT.

4724
03:02:19,732 --> 03:02:21,133
>> IF A PROGRAM IS
TERMINATED

4725
03:02:21,133 --> 03:02:25,070
THERE HAS TO BE A NEW CONCEPT?

4726
03:02:25,070 --> 03:02:30,242
OKAY. 

4727
03:02:30,242 --> 03:02:30,543
>> THANKS.

4728
03:02:30,543 --> 03:02:31,410
>> THAT'S NOT TRUE.

4729
03:02:31,410 --> 03:02:32,745
TAKE THAT BACK.

4730
03:02:32,745 --> 03:02:34,413
REBEKAH IS SHAKING HER HEAD.

4731
03:02:34,413 --> 03:02:36,148
LET'S PUT IT THIS WAY.

4732
03:02:36,148 --> 03:02:37,917
WE BRINGING THIS FORWARD AS A

4733
03:02:37,917 --> 03:02:39,718
CONCEPT FOR YOUR CONSIDERATION.

4734
03:02:39,718 --> 03:02:42,421
HOW ABOUT THAT?

4735
03:02:42,421 --> 03:02:42,688
>> OKAY.

4736
03:02:42,688 --> 03:02:44,256
>> I GOT A NOD FOR THAT SO

4737
03:02:44,256 --> 03:02:48,427
THAT'S WHAT WE'RE GOING WITH.

4738
03:02:48,427 --> 03:02:50,629
>> MAYBE I COULD BE A
LITTLE

4739
03:02:50,629 --> 03:02:51,597
LESS OPAQUE.

4740
03:02:51,597 --> 03:02:52,364
>> THANK YOU.

4741
03:02:52,364 --> 03:02:54,099
>> WHEN A GRANT IS
TERMINATED,

4742
03:02:54,099 --> 03:02:57,269
THE GRANT IS NO LONGER ELIGIBLE

4743
03:02:57,269 --> 03:03:00,606
TO RECOMPETE.

4744
03:03:00,606 --> 03:03:03,542
OR TO BE REMEDIATED IN ANY WAY.

4745
03:03:03,542 --> 03:03:05,177
HOWEVER, THAT DOESN'T NEGATE THE

4746
03:03:05,177 --> 03:03:06,712
UNDERLYING MOTIVATION OF THE

4747
03:03:06,712 --> 03:03:10,816
WORK THAT WE'RE PROPOSING TO DO,

4748
03:03:10,816 --> 03:03:11,951
THE CONCEPT.

4749
03:03:11,951 --> 03:03:13,953
AND SO IF WE WANT TO RECOMPETE,

4750
03:03:13,953 --> 03:03:17,523
IF WE WANT TO COMPETE THIS AND

4751
03:03:17,523 --> 03:03:20,292
CONTINUE THIS PROGRAM PERHAPS

4752
03:03:20,292 --> 03:03:21,594
SLIGHTLY DIFFERENT FASHION, WE

4753
03:03:21,594 --> 03:03:23,562
MUST HAVE A VALID CONCEPT IN

4754
03:03:23,562 --> 03:03:28,033
ORDER TO DO THAT.

4755
03:03:28,033 --> 03:03:28,300
>> YES.

4756
03:03:28,300 --> 03:03:30,436
>> DOES THAT MAKE SENSE
NOW?

4757
03:03:30,436 --> 03:03:33,505
>>  YEAH, I JUST THINK IT
WOULD

4758
03:03:33,505 --> 03:03:36,909
BE HELPFUL TO GIVE US MORE THAN

4759
03:03:36,909 --> 03:03:38,744
THE STANDARD LANGUAGE.

4760
03:03:38,744 --> 03:03:40,412
WE'RE ENTERING CONFUSING TIMES.

4761
03:03:40,412 --> 03:03:43,148
THE CLEARER YOU CAN BE THE

4762
03:03:43,148 --> 03:03:44,683
BETTER WE'RE ABLE TO HELP YOU

4763
03:03:44,683 --> 03:03:44,917
ALONG.

4764
03:03:44,917 --> 03:03:47,753
THAT'S GOING TO HAPPEN WITH THE

4765
03:03:47,753 --> 03:03:53,258
NEXT ONE TOO.

4766
03:03:53,258 --> 03:03:57,296
>> I NOTICED IN THE
PRESENTATION

4767
03:03:57,296 --> 03:04:01,600
AND IN THE COUNCIL WEBSITE THAT

4768
03:04:01,600 --> 03:04:08,574
WAS FOCUSED ON MODERN BIOLOGICAL

4769
03:04:08,574 --> 03:04:11,310
MEDICINE TECHNOLOGY, NOW PERHAPS

4770
03:04:11,310 --> 03:04:13,846
SUGGEST THAT BROADENED

4771
03:04:13,846 --> 03:04:15,481
ESPECIALLY AFTER THE

4772
03:04:15,481 --> 03:04:16,915
PRESENTATIONS TODAY, ON THE

4773
03:04:16,915 --> 03:04:19,551
IMPORTANCE ON DATA SCIENCE.

4774
03:04:19,551 --> 03:04:22,955
I KEPT THINKING HOW TRAINING IN

4775
03:04:22,955 --> 03:04:26,892
THOSE AREAS REALLY IS IMPORTANT,

4776
03:04:26,892 --> 03:04:29,428
IN ANY CAREER DEVELOPMENT OR

4777
03:04:29,428 --> 03:04:37,302
OTHER TRAINING PROGRAMS. 

4778
03:04:37,302 --> 03:04:37,569
>> OKAY.

4779
03:04:37,569 --> 03:04:41,273
THAT NOTE IS TAKEN.

4780
03:04:41,273 --> 03:04:42,841
I THINK DR. MALDONADO'S POINT,

4781
03:04:42,841 --> 03:04:44,343
WE'RE TRYING TO BE AS CLEAR AS

4782
03:04:44,343 --> 03:04:46,979
WE CAN WITH RESPECT TO NEED TO

4783
03:04:46,979 --> 03:04:49,615
BRING THESE CONCEPTS BACK.

4784
03:04:49,615 --> 03:04:53,118
AND SO I THINK WHAT WE WILL BE

4785
03:04:53,118 --> 03:04:55,387
ASKING THE COUNCIL FOR IS YOUR

4786
03:04:55,387 --> 03:04:56,055
UNDERSTANDING THAT WE'RE

4787
03:04:56,055 --> 03:04:59,358
PRESENTING THESE CONCEPTS SO

4788
03:04:59,358 --> 03:05:00,759
THEY CAN BE RECOMPETED.

4789
03:05:00,759 --> 03:05:01,527
>> THAT'S HELPFUL.

4790
03:05:01,527 --> 03:05:02,961
YEAH, I'M TRYING TO UNDERSTAND

4791
03:05:02,961 --> 03:05:04,930
PROCESS MORE THAN ANYTHING ELSE.

4792
03:05:04,930 --> 03:05:07,232
SO THAT'S FINE.

4793
03:05:07,232 --> 03:05:08,000
THANK YOU.

4794
03:05:08,000 --> 03:05:10,069
I APPRECIATE HOW HARD YOU'RE ALL

4795
03:05:10,069 --> 03:05:11,170
WORKING RIGHT NOW.

4796
03:05:11,170 --> 03:05:12,705
JUST WANT TO MAKE SURE I

4797
03:05:12,705 --> 03:05:14,873
UNDERSTAND WHAT I'M VOTING FOR.

4798
03:05:14,873 --> 03:05:15,441
>> CERTAINLY.

4799
03:05:15,441 --> 03:05:18,477
AND SO I THINK WHAT WE'RE DOING

4800
03:05:18,477 --> 03:05:19,945
AT THIS MOMENT IS VERY MUCH IN

4801
03:05:19,945 --> 03:05:21,680
LINE WITH TRYING TO MAKE SURE

4802
03:05:21,680 --> 03:05:23,315
THAT THE PROGRAMS THAT WE KNOW

4803
03:05:23,315 --> 03:05:24,583
ARE VERY IMPORTANT FOR THE AREAS

4804
03:05:24,583 --> 03:05:27,052
OF SCIENCE THAT ARE IN OUR

4805
03:05:27,052 --> 03:05:28,954
MISSION ARE ABLE TO BE

4806
03:05:28,954 --> 03:05:38,564
RECOMPETED AND AVAILABLE TO THE

4807
03:05:38,564 --> 03:05:39,231
FIELD.

4808
03:05:39,231 --> 03:05:39,665
>> DR. AIZER?

4809
03:05:39,665 --> 03:05:40,032
>>  THANK YOU.

4810
03:05:40,032 --> 03:05:43,168
I DON'T KNOW IF THIS QUESTION IS

4811
03:05:43,168 --> 03:05:45,537
TOO SPECIFIC FOR THE CONCEPT

4812
03:05:45,537 --> 03:05:47,740
PHASE. 

4813
03:05:47,740 --> 03:05:49,508
BUT HERE IT IS.

4814
03:05:49,508 --> 03:05:50,275
TWO PARTS.

4815
03:05:50,275 --> 03:05:53,779
FIRST IS ARE THERE AREAS OF THE

4816
03:05:53,779 --> 03:05:56,849
COUNTRY THAT ARE UNDERSERVED BY

4817
03:05:56,849 --> 03:05:57,716
PEDIATRIC RESEARCHERS, ARE THERE

4818
03:05:57,716 --> 03:06:01,487
AREAS WHERE WE HAVE A DEARTH OF

4819
03:06:01,487 --> 03:06:03,922
SCHOLARS IN THE SPACE?

4820
03:06:03,922 --> 03:06:08,727
AND IF SO, WOULD THIS PROGRAM

4821
03:06:08,727 --> 03:06:13,899
SEEK TO ADDRESS THAT BY

4822
03:06:13,899 --> 03:06:16,401
CONSIDERING GEOGRAPHIC

4823
03:06:16,401 --> 03:06:21,240
DISTRIBUTION IN EITHER

4824
03:06:21,240 --> 03:06:23,876
SOLICITATION OR AWARD PHASE?

4825
03:06:23,876 --> 03:06:28,580
>>  THIS PROGRAM IS
DESIGNED SO

4826
03:06:28,580 --> 03:06:30,649
THAT ANYONE THAT'S INTERESTED IN

4827
03:06:30,649 --> 03:06:32,184
GOING INTO ACADEMIC PEDIATRICS

4828
03:06:32,184 --> 03:06:33,385
CAN APPLY.

4829
03:06:33,385 --> 03:06:36,021
SO FROM ANY ACADEMIC CENTER IN

4830
03:06:36,021 --> 03:06:41,260
THE UNITED STATES.

4831
03:06:41,260 --> 03:06:41,960
SO, THEIR PARTICULAR ACADEMIC

4832
03:06:41,960 --> 03:06:46,064
CENTER DOESN'T HAVE TO BE

4833
03:06:46,064 --> 03:06:48,167
NECESSARILY PART OF A PROGRAM

4834
03:06:48,167 --> 03:06:53,205
BEFORE BEING ABLE TO APPLY.

4835
03:06:53,205 --> 03:06:55,808
SO THEORETICALLY THE SCHOLARS

4836
03:06:55,808 --> 03:06:58,777
CAN COME FROM ANY ACADEMIC

4837
03:06:58,777 --> 03:07:01,713
PEDIATRIC CENTER IN THE UNITED

4838
03:07:01,713 --> 03:07:02,281
STATES.

4839
03:07:02,281 --> 03:07:04,116
>> YES, OF COURSE.

4840
03:07:04,116 --> 03:07:09,054
MY QUESTION WAS MORE, YOU KNOW,

4841
03:07:09,054 --> 03:07:11,690
IN CONSIDERING AWARDS WILL

4842
03:07:11,690 --> 03:07:16,161
GEOGRAPHIC DISTRIBUTION BE

4843
03:07:16,161 --> 03:07:16,495
CONSIDERED?

4844
03:07:16,495 --> 03:07:18,597
OR WILL THERE BE AN OFFER TO

4845
03:07:18,597 --> 03:07:19,798
SOLICIT FOLKS FROM UNDERSERVED

4846
03:07:19,798 --> 03:07:20,532
AREAS, OR NOT?

4847
03:07:20,532 --> 03:07:26,371
THAT'S FINE.

4848
03:07:26,371 --> 03:07:27,172
JUST A QUESTION.

4849
03:07:27,172 --> 03:07:28,874
>> WHAT WE CAN DO IN THIS

4850
03:07:28,874 --> 03:07:30,075
SITUATION LET US LOOK AT THE

4851
03:07:30,075 --> 03:07:30,275
TERMS.

4852
03:07:30,275 --> 03:07:32,044
WE CAN TAKE THE NOTE THAT

4853
03:07:32,044 --> 03:07:34,680
THERE'S A QUESTION ABOUT

4854
03:07:34,680 --> 03:07:36,215
UNDERSERVED AREAS FOR PEDIATRIC

4855
03:07:36,215 --> 03:07:36,481
MEDICINE.

4856
03:07:36,481 --> 03:07:38,183
AND LET US TAKE THE NOTE AND

4857
03:07:38,183 --> 03:07:38,951
BRING THAT BACK FOR

4858
03:07:38,951 --> 03:07:42,120
CONSIDERATION AS WE DEVELOP THE

4859
03:07:42,120 --> 03:07:52,264
CONCEPT.

4860
03:07:54,933 --> 03:07:56,134
>> DR. JABS?

4861
03:07:56,134 --> 03:07:56,468
DR. JABS?

4862
03:07:56,468 --> 03:07:58,337
>>  HI.

4863
03:07:58,337 --> 03:08:00,072
I WAS JUST WONDERING WHAT THE

4864
03:08:00,072 --> 03:08:04,643
MEANING OF THE TERM BASIC

4865
03:08:04,643 --> 03:08:06,879
SCIENCE TECHNOLOGY IS?

4866
03:08:06,879 --> 03:08:09,414
IS THAT BROAD ENOUGH?

4867
03:08:09,414 --> 03:08:12,150
DOES THAT INCLUDE ALL OF THE

4868
03:08:12,150 --> 03:08:12,751
CLINICAL RESEARCH, CLINICAL

4869
03:08:12,751 --> 03:08:16,221
TRIALS, ET CETERA, ET CETERA?

4870
03:08:16,221 --> 03:08:18,190
>>  YEAH, WELL, ACTUALLY I
WAS

4871
03:08:18,190 --> 03:08:23,095
GIVING SOME OF THE HISTORY, THAT

4872
03:08:23,095 --> 03:08:25,964
THAT IS WHAT REALLY THE PURPOSE

4873
03:08:25,964 --> 03:08:30,869
WAS WHEN IT FIRST WAS INITIATED.

4874
03:08:30,869 --> 03:08:36,909
AND IT WAS -- THE MAIN FOCUS WAS

4875
03:08:36,909 --> 03:08:37,776
ON TRANSLATIONAL RESEARCH, IN

4876
03:08:37,776 --> 03:08:41,613
OTHER WORDS GIVING THE SCHOLARS

4877
03:08:41,613 --> 03:08:52,090
THE BASIS IN WHICH THEY CAN

4878
03:08:53,492 --> 03:08:55,961
CREATE VERY INTERESTING -- IF

4879
03:08:55,961 --> 03:08:58,463
YOU LOOK AT REALLY THE PROGRAM

4880
03:08:58,463 --> 03:09:01,967
ITSELF, RIGHT NOW, IT DOES

4881
03:09:01,967 --> 03:09:03,702
INCLUDE -- IT'S VERY WIDESPREAD,

4882
03:09:03,702 --> 03:09:05,904
THE SCIENCE IS EXTREMELY

4883
03:09:05,904 --> 03:09:06,905
WIDESPREAD.

4884
03:09:06,905 --> 03:09:09,174
IT'S NOT JUST FOCUSED IN THE

4885
03:09:09,174 --> 03:09:11,043
LAB.

4886
03:09:11,043 --> 03:09:13,879
SO, I DIDN'T MEAN TO SAY THAT

4887
03:09:13,879 --> 03:09:17,382
THAT WAS JUST THAT AREA OF

4888
03:09:17,382 --> 03:09:18,583
TRAINING.

4889
03:09:18,583 --> 03:09:20,252
>> SO THE INTENTION IS TO
KEEP

4890
03:09:20,252 --> 03:09:23,522
IT BROAD.

4891
03:09:23,522 --> 03:09:24,323
>> YES.

4892
03:09:24,323 --> 03:09:29,995
>> IN ITS CONCEPT. 

4893
03:09:29,995 --> 03:09:30,262
THANK YOU.

4894
03:09:30,262 --> 03:09:35,367
 

4895
03:09:35,367 --> 03:09:40,305
>> ARE THERE ANY OTHER
COMMENTS

4896
03:09:40,305 --> 03:09:41,039
OR QUESTIONS?

4897
03:09:41,039 --> 03:09:48,513
WE CAN ASK FOR A MOTION TO

4898
03:09:48,513 --> 03:09:48,747
APPROVE.

4899
03:09:48,747 --> 03:09:51,149
>> SO MOVED.

4900
03:09:51,149 --> 03:09:56,621
>> THAT WAS --

4901
03:09:56,621 --> 03:09:58,223
>> MALDONADO.

4902
03:09:58,223 --> 03:09:58,523
>> SECOND?

4903
03:09:58,523 --> 03:09:59,691
>> SECOND.

4904
03:09:59,691 --> 03:10:00,425
>> ALL RIGHT.

4905
03:10:00,425 --> 03:10:07,733
ALL IN FAVOR PLEASE RAISE YOUR

4906
03:10:07,733 --> 03:10:08,066
HAND?

4907
03:10:08,066 --> 03:10:09,067
THANK YOU SO MUCH.

4908
03:10:09,067 --> 03:10:14,339
NOW WE'RE GOING TO MOVE ON AND

4909
03:10:14,339 --> 03:10:18,477
HEAR FROM DR. SONIA LEE, HIV

4910
03:10:18,477 --> 03:10:21,747
PEDIATRIC, ADOLESCENT, AND

4911
03:10:21,747 --> 03:10:23,849
MATERNAL CLINICAL TRIALS.

4912
03:10:23,849 --> 03:10:25,817
>> THANKS, DR. RASOOLY.

4913
03:10:25,817 --> 03:10:32,391
SEEKS COUNCIL APPROVAL FOR THE

4914
03:10:32,391 --> 03:10:32,691
INITIATIVE.

4915
03:10:32,691 --> 03:10:33,925
MATERNAL AND PEDIATRIC

4916
03:10:33,925 --> 03:10:35,660
INFECTIOUS DISEASE BRANCH

4917
03:10:35,660 --> 03:10:36,661
DEVELOPS, IMPLEMENTS DIRECTS

4918
03:10:36,661 --> 03:10:38,730
WIDE RANGE OF DOMESTIC AND

4919
03:10:38,730 --> 03:10:39,598
INTERNATIONAL RESEARCH

4920
03:10:39,598 --> 03:10:45,270
ACTIVITIES FOR THE STUDY OF THE

4921
03:10:45,270 --> 03:10:46,938
EPIDEMIOLOGY, DIAGNOSIS,

4922
03:10:46,938 --> 03:10:47,906
CLINICAL MANIFESTATIONS,

4923
03:10:47,906 --> 03:10:48,774
PATHOGENESIS, TRANSMISSION,

4924
03:10:48,774 --> 03:10:51,977
PREVENTION, AND TREATMENT OF HIV

4925
03:10:51,977 --> 03:10:54,813
AND ITS COMPLICATIONS, INFANTS,

4926
03:10:54,813 --> 03:10:55,580
CHILDREN, ADOLESCENTS, PREGNANT

4927
03:10:55,580 --> 03:10:56,348
WOMEN.

4928
03:10:56,348 --> 03:10:58,984
BECAUSE OF THE UNIQUE ASPECTS OF

4929
03:10:58,984 --> 03:11:01,653
HIV IN PEDIATRIC AND MATERNAL

4930
03:11:01,653 --> 03:11:02,921
POPULATIONS, A SPECIFIC CLINICAL

4931
03:11:02,921 --> 03:11:05,457
TRIALS NETWORK IS NEEDED TO

4932
03:11:05,457 --> 03:11:07,392
DEVELOP AND CONDUCT INNOVATIVE

4933
03:11:07,392 --> 03:11:09,694
RESEARCH WITH FOCUS IMPACT ON

4934
03:11:09,694 --> 03:11:11,363
IMPROVING LONG-TERM HEALTH OF

4935
03:11:11,363 --> 03:11:14,733
POPULATIONS AFFECTED BY AND

4936
03:11:14,733 --> 03:11:18,136
LIVING WITH HIV.

4937
03:11:18,136 --> 03:11:19,771
NOTABLE ACCOMPLISHMENTS INCLUDED

4938
03:11:19,771 --> 03:11:23,508
REDUCTION OF VERTICAL HIV

4939
03:11:23,508 --> 03:11:26,344
TRANSMISSION TO LESS THAN  2%,

4940
03:11:26,344 --> 03:11:29,181
APPROVAL TO TREAT INFANTS AND

4941
03:11:29,181 --> 03:11:30,949
CHILDREN, APPROVAL OF

4942
03:11:30,949 --> 03:11:32,150
PRE-EXPOSURE PROPHYLAXIS FOR HIV

4943
03:11:32,150 --> 03:11:35,687
PREVENTION FOR ADOLESCENTS. 

4944
03:11:35,687 --> 03:11:37,522
THIS NETWORK WILL ENCOMPASS

4945
03:11:37,522 --> 03:11:39,691
APPROACHES TO ADDRESSING ONGOING

4946
03:11:39,691 --> 03:11:42,327
PUBLIC HEALTH ISSUES WITH

4947
03:11:42,327 --> 03:11:43,528
INVESTIGATIVE LEADERSHIP,

4948
03:11:43,528 --> 03:11:45,797
OPERATIONS AND DATA

4949
03:11:45,797 --> 03:11:46,832
COORDINATION, COST

4950
03:11:46,832 --> 03:11:49,568
EFFECTIVENESS, CLINICAL TRIALS

4951
03:11:49,568 --> 03:11:50,435
SITE CONSORTIUMS, THE

4952
03:11:50,435 --> 03:11:51,870
INFRASTRUCTURE SUPPORTED BY THIS

4953
03:11:51,870 --> 03:11:54,940
NETWORK WILL ALSO ENGAGE IN

4954
03:11:54,940 --> 03:11:57,509
COLLABORATIONS AND STUDIES WITH

4955
03:11:57,509 --> 03:11:58,743
OTHER HIV AND RELEVANT

4956
03:11:58,743 --> 03:12:00,212
INFECTIOUS DISEASE CLINICAL

4957
03:12:00,212 --> 03:12:03,915
STUDIES AS WELL AS FORGE NEW

4958
03:12:03,915 --> 03:12:04,382
PARTNERSHIPS, ASSURING

4959
03:12:04,382 --> 03:12:06,118
IMPROVEMENT OF HEALTH OF ALL

4960
03:12:06,118 --> 03:12:08,620
PEDIATRIC AND MATERNAL HIV

4961
03:12:08,620 --> 03:12:09,488
POPULATIONS.

4962
03:12:09,488 --> 03:12:14,860
THIS PROPOSED CONCEPT ALIGNS

4963
03:12:14,860 --> 03:12:19,131
WITH NICHD STRATEGIC PLAN AND

4964
03:12:19,131 --> 03:12:21,766
2025 AND 2025 POST AND COST

4965
03:12:21,766 --> 03:12:26,571
CUTTING AREAS. 

4966
03:12:26,571 --> 03:12:27,772
IT ALIGNS WITH NICHD PRIORITIES

4967
03:12:27,772 --> 03:12:32,144
AND THOSE OF THE OFFICE OF AIDS

4968
03:12:32,144 --> 03:12:32,410
RESEARCH.

4969
03:12:32,410 --> 03:12:34,446
THANK YOU.

4970
03:12:34,446 --> 03:12:36,314
>> ARE THERE ANY QUESTIONS
OR

4971
03:12:36,314 --> 03:12:45,957
COMMENTS ON THIS INITIATIVE? 

4972
03:12:45,957 --> 03:12:46,491
DR. MALDONADO?

4973
03:12:46,491 --> 03:12:49,794
>>  YES, THANK YOU FOR
THAT

4974
03:12:49,794 --> 03:12:50,529
DESCRIPTION.

4975
03:12:50,529 --> 03:12:52,297
WILL THERE BE POTENTIAL FOR

4976
03:12:52,297 --> 03:12:54,733
GLOBAL INVOLVEMENT AS WELL FOR

4977
03:12:54,733 --> 03:12:57,802
THESE, FOR THIS CONCEPT DOWN THE

4978
03:12:57,802 --> 03:12:58,003
LINE?

4979
03:12:58,003 --> 03:12:58,436
>>  YES.

4980
03:12:58,436 --> 03:13:00,205
AND WE'LL MAKE SURE THE

4981
03:13:00,205 --> 03:13:01,506
INITIATIVE IS ALIGNED WITH ALL

4982
03:13:01,506 --> 03:13:03,775
OF OUR NIH POLICIES AND DOING

4983
03:13:03,775 --> 03:13:05,544
GLOBAL AND FOREIGN

4984
03:13:05,544 --> 03:13:05,911
COLLABORATIONS.

4985
03:13:05,911 --> 03:13:16,054
SO YES. 

4986
03:13:17,522 --> 03:13:22,594
>> OTHER QUESTIONS OR
COMMENTS? 

4987
03:13:22,594 --> 03:13:24,796
SEEING NONE, THEN IS THERE A

4988
03:13:24,796 --> 03:13:32,337
MOTION TO APPROVE THIS CONCEPT?

4989
03:13:32,337 --> 03:13:37,809
>> SO MOVED, BONNIE
MALDONADO. 

4990
03:13:37,809 --> 03:13:38,610
>> AND A SECOND?

4991
03:13:38,610 --> 03:13:39,110
>>  SECOND.

4992
03:13:39,110 --> 03:13:40,979
>> THANK YOU VERY MUCH.

4993
03:13:40,979 --> 03:13:51,489
ALL IN FAVOR RAISE YOUR HAND.

4994
03:13:58,463 --> 03:14:03,668
OKAY.

4995
03:14:03,668 --> 03:14:05,203
THANKS VERY MUCH.

4996
03:14:05,203 --> 03:14:08,373
LET'S MOVE ON TO HEAR FROM DR.

4997
03:14:08,373 --> 03:14:10,442
VIRGINIA SALO, CHILD DEVELOPMENT

4998
03:14:10,442 --> 03:14:12,310
AND BEHAVIOR BRANCH, ABOUT THE

4999
03:14:12,310 --> 03:14:15,614
IMPACT OF TECHNOLOGY AND DIGITAL

5000
03:14:15,614 --> 03:14:19,551
MEDIA EXPOSURE USAGE ON CHILD

5001
03:14:19,551 --> 03:14:20,852
AND ADOLESCENT DEVELOPMENT.

5002
03:14:20,852 --> 03:14:21,987
>> THANK YOU.

5003
03:14:21,987 --> 03:14:23,922
PROGRAM SEEKS COUNCIL APPROVAL

5004
03:14:23,922 --> 03:14:25,257
FOR INITIATIVE, IMPACT OF

5005
03:14:25,257 --> 03:14:26,358
TECHNOLOGY AND DIGITAL MEDIA

5006
03:14:26,358 --> 03:14:29,060
EXPOSURE AND USE ON CHILD AND

5007
03:14:29,060 --> 03:14:30,729
ADOLESCENT DEVELOPMENT.

5008
03:14:30,729 --> 03:14:33,031
TECHNOLOGY AND DIGITAL MEDIA,

5009
03:14:33,031 --> 03:14:34,633
TDM, HAVE BECOME INTEGRAL PART

5010
03:14:34,633 --> 03:14:36,968
OF DAILY LIVES OF CHILDREN AND

5011
03:14:36,968 --> 03:14:38,169
FAMILIES.

5012
03:14:38,169 --> 03:14:39,170
MOST CHILDREN NOW ENGAGED

5013
03:14:39,170 --> 03:14:41,339
STARTING FROM EARLY AGE WITH

5014
03:14:41,339 --> 03:14:44,976
HIGH LEVELS OF EXPOSURE ACROSS

5015
03:14:44,976 --> 03:14:50,248
MULTIPLE DEVICES AND WIDE RANGE

5016
03:14:50,248 --> 03:14:54,386
OF CONTENT, URGENT NEED TO

5017
03:14:54,386 --> 03:14:56,588
UNDERSTAND IMPACT OF DEVELOPMENT

5018
03:14:56,588 --> 03:14:57,789
AND INTERACTION BETWEEN FAMILY

5019
03:14:57,789 --> 03:14:59,424
MEMBERS, PEERS, SOCIETY.

5020
03:14:59,424 --> 03:15:01,393
IN THE FIRST CYCLE NICHD

5021
03:15:01,393 --> 03:15:03,695
SUPPORTED THREE AWARDS THAT HAVE

5022
03:15:03,695 --> 03:15:09,401
FOCUSED ON BUILDING FOUNDATIONAL

5023
03:15:09,401 --> 03:15:09,668
KNOWLEDGE.

5024
03:15:09,668 --> 03:15:12,437
THIS INVESTMENT HAS PROVIDED

5025
03:15:12,437 --> 03:15:13,538
EXEMPLARS WITH METHODOLOGICAL

5026
03:15:13,538 --> 03:15:15,206
RIGOROUS RESEARCH TO ADVANCE

5027
03:15:15,206 --> 03:15:16,941
SCIENTIFIC KNOWLEDGE BASE BUT

5028
03:15:16,941 --> 03:15:22,213
ALONG WITH TDM WORKSHOP SURFACED

5029
03:15:22,213 --> 03:15:23,748
GAPS AND CHALLENGES THAT MUST

5030
03:15:23,748 --> 03:15:25,717
ENABLE PROGRESS GOING FORWARD.

5031
03:15:25,717 --> 03:15:28,453
THE GOAL IS TO SUPPORT

5032
03:15:28,453 --> 03:15:30,955
INNOVATIVE AND TRANSDISCIPLINARY

5033
03:15:30,955 --> 03:15:32,590
RESEARCH.

5034
03:15:32,590 --> 03:15:34,693
OUR APPROACH INVOLVES BALANCING

5035
03:15:34,693 --> 03:15:36,561
RISK, DESIGNING FLEXIBILITIES TO

5036
03:15:36,561 --> 03:15:37,662
PURSUE NOVEL TECHNOLOGIES AND

5037
03:15:37,662 --> 03:15:39,531
MEASUREMENT TO APPROACHES.

5038
03:15:39,531 --> 03:15:41,933
THE CONCEPT TOPIC CUTS ACROSS

5039
03:15:41,933 --> 03:15:43,468
RESEARCH PORTFOLIOS WITHIN CHILD

5040
03:15:43,468 --> 03:15:49,708
DEVELOPMENT AND BEHAVIOR BRANCH,

5041
03:15:49,708 --> 03:15:52,610
ALIGNED WITH STATED EMPHASIS, TO

5042
03:15:52,610 --> 03:15:54,779
BE BROADLY INCLUSIVE OF NICHD

5043
03:15:54,779 --> 03:15:57,615
PRIORITY POPULATIONS. 

5044
03:15:57,615 --> 03:15:58,616
THIS ALIGNS WITH NICHD'S 2025

5045
03:15:58,616 --> 03:16:02,120
STRATEGIC PLAN THEME FOCUSED ON

5046
03:16:02,120 --> 03:16:03,455
IMPROVING CHILD AND ADOLESCENT

5047
03:16:03,455 --> 03:16:07,592
HEALTH AND EMPHASIS ON

5048
03:16:07,592 --> 03:16:09,327
CAPITALIZING ON ARTIFICIAL

5049
03:16:09,327 --> 03:16:10,995
INTELLIGENCE TO IMPROVE HEALTH

5050
03:16:10,995 --> 03:16:12,063
AND BIRTH OUTCOMES.

5051
03:16:12,063 --> 03:16:15,367
IT WILL PROVIDE OPPORTUNITIES TO

5052
03:16:15,367 --> 03:16:17,669
ADVANCE TRANSDISCIPLINARY AND

5053
03:16:17,669 --> 03:16:18,937
CROSS-CUTTING SCIENTIFIC TOPICS,

5054
03:16:18,937 --> 03:16:20,071
OPPORTUNITIES FOR PROJECT

5055
03:16:20,071 --> 03:16:20,939
EMBEDDED CAREER ENHANCING

5056
03:16:20,939 --> 03:16:23,141
OPPORTUNITIES TO SUPPORT THE

5057
03:16:23,141 --> 03:16:27,645
NEXT GENERATION OF SCIENTISTS.

5058
03:16:27,645 --> 03:16:29,180
>> THANK YOU SO MUCH.

5059
03:16:29,180 --> 03:16:39,557
ARE THERE ANY QUESTIONS OR

5060
03:16:39,557 --> 03:16:44,162
COMMENTS?

5061
03:16:44,162 --> 03:16:48,299
NOT SEEING ANY, DO I HAVE A

5062
03:16:48,299 --> 03:16:56,841
MOTION TO APPROVE THIS CONCEPT? 

5063
03:16:56,841 --> 03:17:02,414
>> I CAN MOVE TO APPROVE.

5064
03:17:02,414 --> 03:17:03,548
>> AND SECOND?

5065
03:17:03,548 --> 03:17:04,516
  SECOND.

5066
03:17:04,516 --> 03:17:05,183
SECOND, DAMIEN.

5067
03:17:05,183 --> 03:17:07,352
>> THANK YOU SO MUCH.

5068
03:17:07,352 --> 03:17:10,188
ALL IN FAVOR?

5069
03:17:10,188 --> 03:17:15,093
 

5070
03:17:15,093 --> 03:17:17,729
ALL RIGHT.

5071
03:17:17,729 --> 03:17:17,996
EXCELLENT.

5072
03:17:17,996 --> 03:17:27,806
AND FINALLY WE'LL HEAR FROM DR.

5073
03:17:27,806 --> 03:17:29,007
O'REILLY, PRESENTING ClinGen

5074
03:17:29,007 --> 03:17:30,642
GENOMIC CURATION EXPERT PANELS.

5075
03:17:30,642 --> 03:17:33,511
>> BEFORE YOU BEGIN, I
BELIEVE

5076
03:17:33,511 --> 03:17:37,215
DR. JABS AND DR. VANDVIDER SAID

5077
03:17:37,215 --> 03:17:40,285
THEY WOULD NOT BE VOTING ON THIS

5078
03:17:40,285 --> 03:17:40,652
INITIATIVE.

5079
03:17:40,652 --> 03:17:41,953
>> THANK YOU.

5080
03:17:41,953 --> 03:17:43,054
PROGRAM SEEKS COUNCIL APPROVAL

5081
03:17:43,054 --> 03:17:49,194
FOR REISSUE OF THIS INITIATIVE,

5082
03:17:49,194 --> 03:17:51,262
ClinGen GENOMIC CURATION

5083
03:17:51,262 --> 03:17:52,263
PANELS, SUPPORTING STIMULATION

5084
03:17:52,263 --> 03:17:57,502
OF EXPERT PANELS THAT MANUALLY

5085
03:17:57,502 --> 03:17:59,270
CURATE, REVIEW, DEFINE CLINICAL

5086
03:17:59,270 --> 03:18:02,874
RELEVANCE OF GENES AND VARIANTS

5087
03:18:02,874 --> 03:18:05,176
AS PART OF ClinGen.

5088
03:18:05,176 --> 03:18:07,245
AS TESTING BECOMES MORE

5089
03:18:07,245 --> 03:18:09,447
PREVALENT, UTILIZED BY PATIENTS

5090
03:18:09,447 --> 03:18:11,749
AND PROVIDERS, THERE ARE MORE

5091
03:18:11,749 --> 03:18:14,185
IDENTIFIED VARIANTS WITH UNKNOWN

5092
03:18:14,185 --> 03:18:15,386
SIGNIFICANCE AND EVEN GREATER

5093
03:18:15,386 --> 03:18:19,023
NEED TO ASSESS IMPACT ON

5094
03:18:19,023 --> 03:18:19,290
DISEASES.

5095
03:18:19,290 --> 03:18:23,294
EXPERT PANELS ARE REQUIRED TO

5096
03:18:23,294 --> 03:18:27,232
UTILIZE FDA APROFIT ClinGen

5097
03:18:27,232 --> 03:18:28,733
INFRASTRUCTURE INCLUDING DATA

5098
03:18:28,733 --> 03:18:31,603
STANDARDS AS THEY EVALUATE AND

5099
03:18:31,603 --> 03:18:35,974
SHARE DATA LINKING GENOMICS TO

5100
03:18:35,974 --> 03:18:40,245
DISEASES; PROVIDING FOCUSED ON

5101
03:18:40,245 --> 03:18:42,847
SUPPORT A CURATION,

5102
03:18:42,847 --> 03:18:44,282
PARTICIPATING PARS, CONTINUING

5103
03:18:44,282 --> 03:18:45,683
LEADERSHIP IN IMPORTANT DOMAIN

5104
03:18:45,683 --> 03:18:47,318
AND CONTINUE PROMOTING CURATION

5105
03:18:47,318 --> 03:18:48,987
EFFORTS IN GENES AND CONDITIONS

5106
03:18:48,987 --> 03:18:51,589
RELEVANT TO OUR MISSION AND

5107
03:18:51,589 --> 03:18:52,790
POPULATIONS OF INTEREST.

5108
03:18:52,790 --> 03:18:55,093
NOTABLY, APPLICATIONS ARE

5109
03:18:55,093 --> 03:18:56,528
ENCOURAGED RELATED TO PRIORITY

5110
03:18:56,528 --> 03:18:58,630
AREAS FOR EIGHT NICHD BRANCHES,

5111
03:18:58,630 --> 03:19:02,333
AND PAR ALIGNS WITH ALL OF NICHD

5112
03:19:02,333 --> 03:19:03,401
STRATEGIC POLLS.

5113
03:19:03,401 --> 03:19:05,270
OVER THE PRIOR THREE

5114
03:19:05,270 --> 03:19:08,473
OPPORTUNITIES NIH RECEIVED 68

5115
03:19:08,473 --> 03:19:09,574
APPLICATIONS, NICHD SPECIFICALLY

5116
03:19:09,574 --> 03:19:16,347
FUNDED 10 OF THE 22 AWARDS

5117
03:19:16,347 --> 03:19:22,720
ACROSS NIH SUPPORTED 31 EXPERT

5118
03:19:22,720 --> 03:19:23,688
PANELS.

5119
03:19:23,688 --> 03:19:25,523
71 PUBLICATIONS CITE, HELPING

5120
03:19:25,523 --> 03:19:28,393
CURATE OVER 800 GENES AND 3800

5121
03:19:28,393 --> 03:19:29,260
VARIANTS.

5122
03:19:29,260 --> 03:19:32,764
ULTIMATELY THESE EXPERT PANELS

5123
03:19:32,764 --> 03:19:33,631
CONTRIBUTE AUTHORITATIVE

5124
03:19:33,631 --> 03:19:34,399
CENTRALIZED PUBLIC RESOURCE

5125
03:19:34,399 --> 03:19:36,801
ABOUT AGAINST CONDITIONS AND

5126
03:19:36,801 --> 03:19:38,703
CLINICALLY RELEVANT GENETIC

5127
03:19:38,703 --> 03:19:43,207
VARIANTS THAT CAUSE THEM.

5128
03:19:43,207 --> 03:19:43,541
 

5129
03:19:43,541 --> 03:19:45,176
>> THANK YOU SO MUCH.

5130
03:19:45,176 --> 03:19:49,581
ARE THERE ANY COMMENTS OR

5131
03:19:49,581 --> 03:19:52,417
QUESTIONS ON THIS INITIATIVE?

5132
03:19:52,417 --> 03:19:55,486
 

5133
03:19:55,486 --> 03:19:57,121
I DON'T SEE ANY COMMENTS OR

5134
03:19:57,121 --> 03:19:57,889
QUESTIONS, ANY HANDS.

5135
03:19:57,889 --> 03:19:58,356
ALL RIGHT.

5136
03:19:58,356 --> 03:20:00,391
CAN WE HAVE A MOTION TO APPROVE

5137
03:20:00,391 --> 03:20:07,765
THIS ONE?

5138
03:20:07,765 --> 03:20:12,337
>> I MOVE TO APPROVE,
BONNIE

5139
03:20:12,337 --> 03:20:12,604
MALDONADO.

5140
03:20:12,604 --> 03:20:17,709
>> A SECOND? 

5141
03:20:17,709 --> 03:20:18,710
>> SECOND.

5142
03:20:18,710 --> 03:20:18,943
CHANCEY.

5143
03:20:18,943 --> 03:20:19,310
>> ALL RIGHT.

5144
03:20:19,310 --> 03:20:20,411
THANK YOU SO MUCH.

5145
03:20:20,411 --> 03:20:23,348
ALL IN FAVOR?

5146
03:20:23,348 --> 03:20:27,485
 

5147
03:20:27,485 --> 03:20:27,685
OKAY.

5148
03:20:27,685 --> 03:20:28,686
THANK YOU ALL.

5149
03:20:28,686 --> 03:20:31,456
THANKS TO MY COLLEAGUES FOR

5150
03:20:31,456 --> 03:20:32,890
THESE INTERESTING CONCEPTS.

5151
03:20:32,890 --> 03:20:42,066
AND NOW WE'LL MOVE TO ANOTHER

5152
03:20:42,066 --> 03:20:43,835
PIECE OF BUSINESS.

5153
03:20:43,835 --> 03:20:45,903
EACH YEAR WE ASK FOR APPROVAL OF

5154
03:20:45,903 --> 03:20:47,438
COUNCIL STATEMENT OF

5155
03:20:47,438 --> 03:20:47,905
UNDERSTANDING.

5156
03:20:47,905 --> 03:20:48,840
WHICH OUTLINES THE GENERAL

5157
03:20:48,840 --> 03:20:51,909
PROCEDURES TO BE USED FOR SECOND

5158
03:20:51,909 --> 03:20:53,344
LEVEL REVIEW.

5159
03:20:53,344 --> 03:20:56,514
THE STATEMENT ADDRESSES COUNCIL

5160
03:20:56,514 --> 03:20:57,815
MEMBERSHIP STRUCTURE, PROCEDURES

5161
03:20:57,815 --> 03:20:59,684
TO REVIEW GRANT APPLICATIONS

5162
03:20:59,684 --> 03:21:01,653
DURING CLOSED SESSION,

5163
03:21:01,653 --> 03:21:02,186
ADMINISTRATIVE DECISIONS,

5164
03:21:02,186 --> 03:21:05,857
ACTIONS THAT DO NOT REQUIRE

5165
03:21:05,857 --> 03:21:10,895
COUNCIL RECOMMENDATION, VOTING

5166
03:21:10,895 --> 03:21:13,531
OPTIONS, EXPEDITED REVIEW,

5167
03:21:13,531 --> 03:21:16,601
PROCEDURES, CONCEPT CLEARANCE,

5168
03:21:16,601 --> 03:21:17,068
EMERGENCY PROCEDURES.

5169
03:21:17,068 --> 03:21:19,103
WE'VE UPDATED STATEMENT OF

5170
03:21:19,103 --> 03:21:21,739
UNDERSTANDING TO REFLECT

5171
03:21:21,739 --> 03:21:28,413
NIH-WIDE POLICY CHANGES WITH

5172
03:21:28,413 --> 03:21:29,514
RESPECT TO APPLICATIONS.

5173
03:21:29,514 --> 03:21:32,950
PLEASE NOTE THIS HAS NOTHING TO

5174
03:21:32,950 --> 03:21:35,119
DO WITH THE EARLIER DISCUSSION

5175
03:21:35,119 --> 03:21:40,158
OF HOW WE'RE CHANGING THE

5176
03:21:40,158 --> 03:21:40,625
APPLICATIONS.

5177
03:21:40,625 --> 03:21:42,560
THIS HAS TO DO WITH A DIFFERENT

5178
03:21:42,560 --> 03:21:43,027
POLICY CHANGE.

5179
03:21:43,027 --> 03:21:45,396
BEGINNING WITH THE NEXT ROUND OF

5180
03:21:45,396 --> 03:21:47,365
APPLICATIONS FOR THE NEXT

5181
03:21:47,365 --> 03:21:50,768
COUNCIL MEETING, WE HAVE TO

5182
03:21:50,768 --> 03:21:51,869
TREAT ANY FOREIGN PRINCIPAL

5183
03:21:51,869 --> 03:21:55,073
INVESTIGATOR, EVEN IF IT'S JUST

5184
03:21:55,073 --> 03:21:58,576
ONE PRINCIPAL INVESTIGATOR AMONG

5185
03:21:58,576 --> 03:21:59,877
SEVERAL, AND EVEN IF THE AWARD

5186
03:21:59,877 --> 03:22:01,846
IS GOING TO U.S. INSTITUTIONS,

5187
03:22:01,846 --> 03:22:05,349
WE HAVE TO TREAT THOSE

5188
03:22:05,349 --> 03:22:09,887
APPLICATIONS AS A FOREIGN

5189
03:22:09,887 --> 03:22:10,221
APPLICATIONS.

5190
03:22:10,221 --> 03:22:11,022
WE'RE PROPOSING EDITS TO

5191
03:22:11,022 --> 03:22:12,623
STATEMENT OF UNDERSTANDING IN

5192
03:22:12,623 --> 03:22:15,026
THE SECTION ON ACTIONS THAT MAY

5193
03:22:15,026 --> 03:22:16,127
BE CONSIDERED INDIVIDUALLY BY

5194
03:22:16,127 --> 03:22:16,360
COUNCIL.

5195
03:22:16,360 --> 03:22:21,466
DO WE HAVE A SLIDE FOR THIS?

5196
03:22:21,466 --> 03:22:22,567
I THOUGHT WE MIGHT.

5197
03:22:22,567 --> 03:22:23,568
OKAY, WE DON'T.

5198
03:22:23,568 --> 03:22:24,001
ALL RIGHT.

5199
03:22:24,001 --> 03:22:28,573
SO IN THE STATEMENT OF

5200
03:22:28,573 --> 03:22:31,542
UNDERSTANDING WHERE IT SAYS THAT

5201
03:22:31,542 --> 03:22:33,377
COUNCIL WILL CONSIDER

5202
03:22:33,377 --> 03:22:34,011
APPLICATIONS INDIVIDUALLY WHEN

5203
03:22:34,011 --> 03:22:37,615
THEY ARE WITHIN A FUNDABLE RANGE

5204
03:22:37,615 --> 03:22:39,884
FROM FOREIGN INSTITUTIONS, WE'RE

5205
03:22:39,884 --> 03:22:42,653
SUGGESTING ADDING THE WORDS "OR

5206
03:22:42,653 --> 03:22:45,223
WHERE ONE OR MORE PRINCIPAL

5207
03:22:45,223 --> 03:22:47,558
INVESTIGATORS ON MULTIPLE P.I.

5208
03:22:47,558 --> 03:22:52,463
APPLICATION IS AFFILIATED WITH A

5209
03:22:52,463 --> 03:22:53,564
FOREIGN INSTITUTION."

5210
03:22:53,564 --> 03:22:54,899
SO CONSIDER THE APPLICATIONS

5211
03:22:54,899 --> 03:22:56,434
INDIVIDUALLY WHEN FROM A FOREIGN

5212
03:22:56,434 --> 03:22:58,269
INSTITUTION OR WHEN ONE OR MORE

5213
03:22:58,269 --> 03:23:01,339
P.I.s IS FROM A FOREIGN

5214
03:23:01,339 --> 03:23:01,672
INSTITUTION.

5215
03:23:01,672 --> 03:23:06,144
THAT'S ONE CHANGE.

5216
03:23:06,144 --> 03:23:08,880
AND THEN SIMILARLY COUNCIL WILL

5217
03:23:08,880 --> 03:23:09,881
CONSIDER INDIVIDUALLY REQUESTS

5218
03:23:09,881 --> 03:23:12,283
TO TRANSFER AN EXISTING AWARD TO

5219
03:23:12,283 --> 03:23:14,919
A FOREIGN INSTITUTION OR BETWEEN

5220
03:23:14,919 --> 03:23:17,522
FOREIGN INSTITUTIONS, AND WE'RE

5221
03:23:17,522 --> 03:23:19,524
ADDING THE LANGUAGE "OR ADDING A

5222
03:23:19,524 --> 03:23:20,258
FOREIGN PRINCIPAL INVESTIGATOR

5223
03:23:20,258 --> 03:23:23,361
ON A MULTIPLE P.I. APPLICATION."

5224
03:23:23,361 --> 03:23:25,663
THOSE ARE THE TWO PROPOSED

5225
03:23:25,663 --> 03:23:26,430
CHANGES.

5226
03:23:26,430 --> 03:23:27,832
ARE THERE ANY QUESTIONS WITH

5227
03:23:27,832 --> 03:23:29,267
RESPECT TO THE PROPOSED

5228
03:23:29,267 --> 03:23:30,701
STATEMENT OF UNDERSTANDING AND

5229
03:23:30,701 --> 03:23:41,179
THESE TWO PROPOSED CHANGES? 

5230
03:23:41,579 --> 03:23:42,814
 

5231
03:23:42,814 --> 03:23:43,247
DR. MALDONADO?

5232
03:23:43,247 --> 03:23:44,448
>>  THANK YOU.

5233
03:23:44,448 --> 03:23:45,583
ONE QUESTION.

5234
03:23:45,583 --> 03:23:46,884
I HAVE TWO.

5235
03:23:46,884 --> 03:23:54,058
FIRST ONE IS, IF YOU HAVE A U.S.

5236
03:23:54,058 --> 03:23:55,927
INVESTIGATOR WHO ALSO HAS AN

5237
03:23:55,927 --> 03:23:56,994
AFFILIATION WITH FOREIGN

5238
03:23:56,994 --> 03:23:58,629
INSTITUTION AS WELL, WOULD THAT

5239
03:23:58,629 --> 03:24:01,165
PERSON THEN COUNT AS A FOREIGN

5240
03:24:01,165 --> 03:24:01,732
INVESTIGATOR?

5241
03:24:01,732 --> 03:24:02,600
WE FREQUENTLY GET APPLICATIONS

5242
03:24:02,600 --> 03:24:04,435
FROM PEOPLE WITH JOINT

5243
03:24:04,435 --> 03:24:08,906
APPOINTMENTS AT AN INTERNATIONAL

5244
03:24:08,906 --> 03:24:09,240
SITE.

5245
03:24:09,240 --> 03:24:10,241
JUST WONDERING WHAT THAT -- I

5246
03:24:10,241 --> 03:24:11,776
DON'T WANT TO MAKE IT DIFFICULT

5247
03:24:11,776 --> 03:24:15,913
BUT THIS IS GOING TO COME UP FOR

5248
03:24:15,913 --> 03:24:16,247
SURE.

5249
03:24:16,247 --> 03:24:18,783
>> THAT'S THE PROBLEM WITH
EVERY

5250
03:24:18,783 --> 03:24:20,985
POLICY WE MAKE.

5251
03:24:20,985 --> 03:24:22,186
ALL PEOPLE OUT THERE ALWAYS

5252
03:24:22,186 --> 03:24:23,855
FIGURE OUT THINGS WE NEVER

5253
03:24:23,855 --> 03:24:24,822
THOUGHT OF.

5254
03:24:24,822 --> 03:24:26,457
I MUST TELL YOU THAT'S SOMETHING

5255
03:24:26,457 --> 03:24:32,230
THAT DID NOT COME UP IN ANY OF

5256
03:24:32,230 --> 03:24:35,132
THE MYRIAD -- LET ME SAY

5257
03:24:35,132 --> 03:24:39,070
TYPICALLY WHEN PEOPLE APPLY FOR

5258
03:24:39,070 --> 03:24:40,805
AWARDS THIS LIST AN AFFILIATION,

5259
03:24:40,805 --> 03:24:44,442
REGARDLESS OF WHAT THE OTHER

5260
03:24:44,442 --> 03:24:46,978
APPOINTMENTS ARE. 

5261
03:24:46,978 --> 03:24:47,812
THAT'S MY EXPERIENCE.

5262
03:24:47,812 --> 03:24:52,650
AND SO IF YOU ARE APPLYING FROM

5263
03:24:52,650 --> 03:24:56,354
UNIVERSITY OF OKLAHOMA, THE

5264
03:24:56,354 --> 03:25:05,029
MONEY WILL BE  YOU IN OKLAHOMA

5265
03:25:05,029 --> 03:25:06,564
IT'S NOT FOREIGN REGARDLESS OF

5266
03:25:06,564 --> 03:25:08,966
WHETHER YOU HAVE A LECTURESHIP

5267
03:25:08,966 --> 03:25:10,601
IN NORWAY OR SOMEWHERE ELSE.

5268
03:25:10,601 --> 03:25:12,370
>> THANK YOU.

5269
03:25:12,370 --> 03:25:13,037
THIS FOREIGN INSTITUTION

5270
03:25:13,037 --> 03:25:15,573
COMPONENT, LET'S SAY YOU DO HAVE

5271
03:25:15,573 --> 03:25:18,009
THAT, DOES IT FALL INTO THE NEW

5272
03:25:18,009 --> 03:25:18,342
POLICY?

5273
03:25:18,342 --> 03:25:24,782
DOES IT KICK INTO A NEW PROCESS 

5274
03:25:24,782 --> 03:25:27,084
OR JUST A WHOLE SEPARATE -- I

5275
03:25:27,084 --> 03:25:29,921
MEAN, IS IT JUST TO BE NOTED?

5276
03:25:29,921 --> 03:25:39,430
WILL THEY BE HANDLING

5277
03:25:39,430 --> 03:25:39,864
DIFFERENTLY.

5278
03:25:39,864 --> 03:25:40,865
>> EXCELLENT QUESTIONS.

5279
03:25:40,865 --> 03:25:42,300
I ACTUALLY HAVE NO IDEA.

5280
03:25:42,300 --> 03:25:43,267
WHAT CAN I SAY?

5281
03:25:43,267 --> 03:25:45,236
WE HAVE NOT SEEN THE NEW

5282
03:25:45,236 --> 03:25:45,469
PROCESS.

5283
03:25:45,469 --> 03:25:47,204
WE DO NOT KNOW WHAT IT LOOKS

5284
03:25:47,204 --> 03:25:47,772
LIKE.

5285
03:25:47,772 --> 03:25:48,439
>> GOT IT.

5286
03:25:48,439 --> 03:25:53,110
SO THIS IS REALLY TO ALIGN WITH

5287
03:25:53,110 --> 03:25:54,312
THE NEW PROCESS.

5288
03:25:54,312 --> 03:25:56,414
>> THE PRINCIPLE IS CLEAR.

5289
03:25:56,414 --> 03:25:58,582
IF THE APPLICATION THAT WE'RE

5290
03:25:58,582 --> 03:26:01,752
CONSIDERING TO PAY HAS A FOREIGN

5291
03:26:01,752 --> 03:26:02,853
PRINCIPAL INVESTIGATOR, THEN

5292
03:26:02,853 --> 03:26:04,422
COUNCIL MUST CONSIDER IT

5293
03:26:04,422 --> 03:26:05,623
INDIVIDUALLY.

5294
03:26:05,623 --> 03:26:06,824
>> I SEE.

5295
03:26:06,824 --> 03:26:07,158
OKAY.

5296
03:26:07,158 --> 03:26:11,195
>> IF THE CHANGE IS WITH
RESPECT

5297
03:26:11,195 --> 03:26:13,164
TO FUNDING FOREIGN SITES, SUCH

5298
03:26:13,164 --> 03:26:15,132
THAT THAT SITUATION WILL NEVER

5299
03:26:15,132 --> 03:26:18,336
EVER ARISE AGAIN, THEN YOU WILL

5300
03:26:18,336 --> 03:26:22,273
NOT SEE IT BEING BROUGHT TO YOU

5301
03:26:22,273 --> 03:26:23,708
IN THE COUNCIL.

5302
03:26:23,708 --> 03:26:27,311
>> GOT IT. 

5303
03:26:27,311 --> 03:26:29,513
OKAY.

5304
03:26:29,513 --> 03:26:33,551
THANK YOU. 

5305
03:26:33,551 --> 03:26:34,318
>> DR. JABS?

5306
03:26:34,318 --> 03:26:38,389
>>  MY QUESTION IS, IS
THIS FOR

5307
03:26:38,389 --> 03:26:42,326
NICHD OR I.C.?

5308
03:26:42,326 --> 03:26:44,395
WE'RE TRYING -- EACH COUNCIL IS

5309
03:26:44,395 --> 03:26:47,798
BEING ASKED THIS, IS THAT

5310
03:26:47,798 --> 03:26:48,799
CORRECT?

5311
03:26:48,799 --> 03:26:49,900
>> THAT IS TRUE.

5312
03:26:49,900 --> 03:26:50,868
>> I SEE.

5313
03:26:50,868 --> 03:26:52,503
I UNDERSTAND NOW.

5314
03:26:52,503 --> 03:26:53,270
OKAY.

5315
03:26:53,270 --> 03:26:56,674
SO THIS IS BEING PUT FORTH AS AN

5316
03:26:56,674 --> 03:26:59,410
OVERALL NIH, AND THEN WE AS A

5317
03:26:59,410 --> 03:27:01,579
COUNCIL MEMBER CAN VOTE OUT, FOR

5318
03:27:01,579 --> 03:27:04,749
THIS, YEAH, REPRESENTING THIS

5319
03:27:04,749 --> 03:27:05,016
INSTITUTE.

5320
03:27:05,016 --> 03:27:15,192
THANK YOU.

5321
03:27:15,726 --> 03:27:21,399
>> CAN YOU QUALIFYING THE
FORUM

5322
03:27:21,399 --> 03:27:22,566
FOR THE COUNCIL?

5323
03:27:22,566 --> 03:27:24,702
>>  SO, FORUM IS MORE THAN

5324
03:27:24,702 --> 03:27:26,537
HALF -- QUORUM IS MORE THAN HALF

5325
03:27:26,537 --> 03:27:28,739
OF THE APPOINTED MEMBERS, AND WE

5326
03:27:28,739 --> 03:27:32,777
NOW HAVE EIGHT APPOINTED

5327
03:27:32,777 --> 03:27:33,010
MEMBERS.

5328
03:27:33,010 --> 03:27:37,915
AND SO QUORUM WOULD BE FIVE.

5329
03:27:37,915 --> 03:27:39,350
AND FORTUNATELY WE HAVE SEVEN ON

5330
03:27:39,350 --> 03:27:49,860
THE LINE SO WE'RE IN VERY GOOD

5331
03:27:55,299 --> 03:27:56,000
SHAPE.

5332
03:27:56,000 --> 03:27:58,135
DO I HAVE A MOTION TO APPROVAL

5333
03:27:58,135 --> 03:27:58,803
THE MOTION --

5334
03:27:58,803 --> 03:28:02,740
>> I HAVE ANOTHER
QUESTION.

5335
03:28:02,740 --> 03:28:03,507
SO SORRY.

5336
03:28:03,507 --> 03:28:06,243
I TAKE THESE VOTES AS WE ALL DO

5337
03:28:06,243 --> 03:28:06,510
SERIOUSLY.

5338
03:28:06,510 --> 03:28:08,846
WHAT HAPPENS IF THIS DOES NOT

5339
03:28:08,846 --> 03:28:10,614
PASS BY COUNCIL, WHAT WOULD

5340
03:28:10,614 --> 03:28:10,848
HAPPEN?

5341
03:28:10,848 --> 03:28:13,884
>>  WE NEED TO HAVE A
VALID

5342
03:28:13,884 --> 03:28:15,986
STATEMENT OF UNDERSTANDING THAT

5343
03:28:15,986 --> 03:28:17,955
WE RENEW EACH YEAR.

5344
03:28:17,955 --> 03:28:18,289
>> OKAY.

5345
03:28:18,289 --> 03:28:21,025
>> WE WOULD HAVE TO KEEP
GOING

5346
03:28:21,025 --> 03:28:22,126
AT IT UNTIL WE GOT YOU TO

5347
03:28:22,126 --> 03:28:23,861
APPROVE SOMETHING THAT YOU COULD

5348
03:28:23,861 --> 03:28:25,629
ALL APPROVE AND THAT MIGHT MEAN

5349
03:28:25,629 --> 03:28:28,599
WE WOULD HAVE TO PUBLISH AND

5350
03:28:28,599 --> 03:28:30,134
HOLD ANOTHER PUBLIC MEETING TO

5351
03:28:30,134 --> 03:28:34,538
DO THAT BETWEEN NOW AND

5352
03:28:34,538 --> 03:28:35,473
SEPTEMBER.

5353
03:28:35,473 --> 03:28:37,608
WHICH IS I'M SURE SOMETHING

5354
03:28:37,608 --> 03:28:40,010
EVERYONE WOULD LOOK FORWARD TO.

5355
03:28:40,010 --> 03:28:42,947
>> BUT MY QUESTION WAS IF
THIS

5356
03:28:42,947 --> 03:28:45,149
IS NIH-WIDE AND THERE ARE

5357
03:28:45,149 --> 03:28:53,924
MULTIPLE COUNCILS VOTING ON

5358
03:28:53,924 --> 03:28:56,193
THIS, DO OUR VOTES COUNT IF

5359
03:28:56,193 --> 03:28:58,295
EVERYBODY ELSE -- HOW IS IT

5360
03:28:58,295 --> 03:28:59,597
PROPORTIONED OUT OR DOES EACH

5361
03:28:59,597 --> 03:29:06,604
COUNCIL HAVE TO HAVE A MAJORITY

5362
03:29:06,604 --> 03:29:06,837
THOUGH?

5363
03:29:06,837 --> 03:29:08,572
>>  IT'S LIKE A TWO-PAGE

5364
03:29:08,572 --> 03:29:11,208
DOCUMENT THAT LISTS HOW WE WORK

5365
03:29:11,208 --> 03:29:12,409
WITH THE COUNCIL.

5366
03:29:12,409 --> 03:29:14,812
WE SAY, ALL RIGHT, WE'RE GOING

5367
03:29:14,812 --> 03:29:16,680
TO BRING THE FOLLOWING

5368
03:29:16,680 --> 03:29:18,215
INDIVIDUAL ACTIONS TO YOU WHEN

5369
03:29:18,215 --> 03:29:21,051
WE COME UP, WE'LL BRING YOU

5370
03:29:21,051 --> 03:29:23,354
APPEALS, CERTAIN KINDS OF

5371
03:29:23,354 --> 03:29:24,121
SPECIAL COUNCIL REVIEW AND

5372
03:29:24,121 --> 03:29:26,090
CERTAIN KINDS OF THINGS.

5373
03:29:26,090 --> 03:29:29,360
THERE'S A WHOLE LIST THERE.

5374
03:29:29,360 --> 03:29:32,296
IT LISTS HOW WE HOLD MEETINGS.

5375
03:29:32,296 --> 03:29:36,567
IT WILL LIST -- EXPLAINS HOW WE

5376
03:29:36,567 --> 03:29:38,769
WOULD DO EXPEDITED REVIEW.

5377
03:29:38,769 --> 03:29:40,638
THERE'S AN ENTIRE DISCUSSION OF

5378
03:29:40,638 --> 03:29:41,705
OUR PROCESS.

5379
03:29:41,705 --> 03:29:44,842
EACH COUNCIL HAS A DIFFERENT

5380
03:29:44,842 --> 03:29:46,110
STATEMENT OF UNDERSTANDING.

5381
03:29:46,110 --> 03:29:48,279
ALL THAT WE ARE ASKING IS TO

5382
03:29:48,279 --> 03:29:52,449
RENEW THE EXISTING STATEMENT OF

5383
03:29:52,449 --> 03:29:53,484
UNDERSTANDING WITH THESE TWO

5384
03:29:53,484 --> 03:29:55,452
LANGUAGE CHANGES SO THAT WE

5385
03:29:55,452 --> 03:29:57,655
COMPLY WITH A NEW NIH-WIDE

5386
03:29:57,655 --> 03:29:57,955
POLICY.

5387
03:29:57,955 --> 03:30:00,824
IT IS NOT AS IF THIS IS THE ONLY

5388
03:30:00,824 --> 03:30:04,962
QUESTION ON WHICH YOU'RE BEING

5389
03:30:04,962 --> 03:30:06,597
ASKED TO VOTE, TO ENDORSE THIS

5390
03:30:06,597 --> 03:30:08,699
POLICY OR NOT ENDORSE THIS

5391
03:30:08,699 --> 03:30:09,099
POLICY.

5392
03:30:09,099 --> 03:30:11,535
IT'S SIMPLY TO MAKE SURE THAT WE

5393
03:30:11,535 --> 03:30:13,270
HAVE A STATEMENT OF

5394
03:30:13,270 --> 03:30:16,774
UNDERSTANDING OF HOW, WHAT RULES

5395
03:30:16,774 --> 03:30:24,648
GOVERN HOW COUNCIL OPERATES.

5396
03:30:24,648 --> 03:30:26,951
I HOPE THIS IS HELPING.

5397
03:30:26,951 --> 03:30:31,422
THIS WOULD HAVE BEEN IMPROVED BY

5398
03:30:31,422 --> 03:30:31,889
A SLIDE.

5399
03:30:31,889 --> 03:30:35,159
>> I CAN PUT THE LANGUAGE
IN IF

5400
03:30:35,159 --> 03:30:36,594
THAT'S HELPFUL, DR. AIZER.

5401
03:30:36,594 --> 03:30:38,996
WELL ACTUALLY, IN THE CHAT.

5402
03:30:38,996 --> 03:30:42,933
>> JUST QUICKLY, BASED ON
PAST

5403
03:30:42,933 --> 03:30:44,001
EXPERIENCE, ABOUT HOW MANY MORE,

5404
03:30:44,001 --> 03:30:46,003
YOU KNOW, CASES WOULD THE

5405
03:30:46,003 --> 03:30:48,939
COUNCIL BE ASKED TO REVIEW WITH

5406
03:30:48,939 --> 03:30:50,040
THIS NEW CHANGE?

5407
03:30:50,040 --> 03:30:53,777
>> I HAVE NO IDEA.

5408
03:30:53,777 --> 03:30:54,211
RIGHT?

5409
03:30:54,211 --> 03:30:56,614
BECAUSE THIS NEW FOREIGN AWARD

5410
03:30:56,614 --> 03:30:59,783
POLICY IS GOING TO COME AND

5411
03:30:59,783 --> 03:31:01,752
SEPARATE OUT THE FOREIGN

5412
03:31:01,752 --> 03:31:04,288
COMPONENTS I THINK OF ANY AWARD

5413
03:31:04,288 --> 03:31:07,258
SO I DON'T REALLY KNOW.

5414
03:31:07,258 --> 03:31:14,465
IT MAY BE ZERO. 

5415
03:31:14,465 --> 03:31:15,566
REMEMBER, YOU WOULD ONLY

5416
03:31:15,566 --> 03:31:16,800
CONSIDER THEM INDIVIDUALLY IF WE

5417
03:31:16,800 --> 03:31:20,070
WERE PROPOSING THEM FOR FUNDING.

5418
03:31:20,070 --> 03:31:22,473
THERE'S LOTS OF THINGS THAT WE

5419
03:31:22,473 --> 03:31:23,374
GET FROM FOREIGN INSTITUTIONS

5420
03:31:23,374 --> 03:31:28,279
WHERE THE SCORES ARE NOT

5421
03:31:28,279 --> 03:31:34,852
MERITORIOUS. 

5422
03:31:34,852 --> 03:31:35,119
ALL RIGHT.

5423
03:31:35,119 --> 03:31:39,590
CAN I HAVE A MOTION TO APPROVE

5424
03:31:39,590 --> 03:31:41,925
THE 2025 PROPOSED STATEMENT OF

5425
03:31:41,925 --> 03:31:52,202
UNDERSTANDING? 

5426
03:31:53,604 --> 03:31:56,974
>> MOVE TO APPROVE.

5427
03:31:56,974 --> 03:32:02,546
>> AND A SECOND? 

5428
03:32:02,546 --> 03:32:03,414
>> SECOND.

5429
03:32:03,414 --> 03:32:03,647
CHANCEY.

5430
03:32:03,647 --> 03:32:04,415
>> THANK YOU.

5431
03:32:04,415 --> 03:32:13,490
ALL IN FAVOR PLEASE VOTE. 

5432
03:32:13,490 --> 03:32:19,196
 

5433
03:32:19,196 --> 03:32:22,032
ALL RIGHT.

5434
03:32:22,032 --> 03:32:23,767
WELL, ANY OPPOSED?

5435
03:32:23,767 --> 03:32:25,502
PLEASE RAISE YOUR HAND.

5436
03:32:25,502 --> 03:32:28,172
SO, LET ME -- WAIT.

5437
03:32:28,172 --> 03:32:30,441
LET'S START AGAIN.

5438
03:32:30,441 --> 03:32:32,876
DR. JABS, YOU VOTED, WAS THAT IN

5439
03:32:32,876 --> 03:32:38,148
FAVOR OR OPPOSED?

5440
03:32:38,148 --> 03:32:39,116
ALL OPPOSED PLEASE RAISE YOUR

5441
03:32:39,116 --> 03:32:44,355
HAND. 

5442
03:32:44,355 --> 03:32:50,427
I DON'T SEE ANY VOTES OPPOSING.

5443
03:32:50,427 --> 03:32:52,029
IS ANYONE SAYING THEY ARE

5444
03:32:52,029 --> 03:32:54,865
ABSTAINING?

5445
03:32:54,865 --> 03:32:55,866
OKAY.

5446
03:32:55,866 --> 03:32:57,935
ALL RIGHT.

5447
03:32:57,935 --> 03:33:00,137
IT SEEMS LIKE THE PROPOSED

5448
03:33:00,137 --> 03:33:02,639
STATEMENT OF UNDERSTANDING HAS

5449
03:33:02,639 --> 03:33:06,043
NOW BEEN APPROVED.

5450
03:33:06,043 --> 03:33:06,343
DR. CERNICH?

5451
03:33:06,343 --> 03:33:08,445
>>  AS ALWAYS, THANK YOU
FOR

5452
03:33:08,445 --> 03:33:10,414
LEADING THE DIFFICULT POLICY

5453
03:33:10,414 --> 03:33:10,848
DISCUSSIONS.

5454
03:33:10,848 --> 03:33:15,786
I APOLOGIZE FOR MY INARTFL

5455
03:33:15,786 --> 03:33:16,120
CONTRIBUTIONS.

5456
03:33:16,120 --> 03:33:19,690
THANK YOU FOR JOINING US FOR THE

5457
03:33:19,690 --> 03:33:20,023
OPEN SESSION.

5458
03:33:20,023 --> 03:33:23,961
I WANT TO RECOGNIZE THIS IS THE

5459
03:33:23,961 --> 03:33:25,729
LAST COUNCIL MEETING DR.

5460
03:33:25,729 --> 03:33:32,403
CONTRERAS WILL SERVE AS LIAISON.

5461
03:33:32,403 --> 03:33:33,604
PEPE, WE ARE GRATEFUL FOR YOUR

5462
03:33:33,604 --> 03:33:36,006
SERVICE AND WOULD LIKE TO OFFER

5463
03:33:36,006 --> 03:33:39,176
A FEW MINUTES FOR COMMENTS.

5464
03:33:39,176 --> 03:33:43,213
 

5465
03:33:43,213 --> 03:33:48,051
PEPE, ARE YOU STILL WITH US?

5466
03:33:48,051 --> 03:33:48,185
 

5467
03:33:48,185 --> 03:33:53,524
HE MAY HAVE DROPPED OFF.

5468
03:33:53,524 --> 03:33:53,724
OKAY.

5469
03:33:53,724 --> 03:33:55,926
WELL, THANKING HIM FOR HIS

5470
03:33:55,926 --> 03:33:58,762
SERVICE REMAINS.

5471
03:33:58,762 --> 03:34:00,297
I'LL SHARE PEPE ALSO SPURRED

5472
03:34:00,297 --> 03:34:02,833
SOME INTEREST FOR MY YOUNGER

5473
03:34:02,833 --> 03:34:07,104
DAUGHTER IN NEUROSCIENCE WITH A

5474
03:34:07,104 --> 03:34:08,071
PRESENTATION, SMITHSONIAN, ON

5475
03:34:08,071 --> 03:34:09,239
ELECTRICAL STIMULATION AND ART

5476
03:34:09,239 --> 03:34:13,010
WHEN SHE WAS 5 OR 6.

5477
03:34:13,010 --> 03:34:14,445
I'VE BEEN GRATEFUL FOR THE

5478
03:34:14,445 --> 03:34:16,246
INTERSECTION OF HIS WORK IN

5479
03:34:16,246 --> 03:34:17,614
NEUROSCIENCE AND WITH THE ARTS

5480
03:34:17,614 --> 03:34:20,217
AND WILLINGNESS TO COME FORWARD

5481
03:34:20,217 --> 03:34:21,452
AND DO PUBLIC PRESENTATIONS OF

5482
03:34:21,452 --> 03:34:24,721
THAT, THAT ARE REALLY

5483
03:34:24,721 --> 03:34:25,022
ACCESSIBLE.

5484
03:34:25,022 --> 03:34:27,257
SO, THIS CONCLUDES THE FIRST DAY

5485
03:34:27,257 --> 03:34:28,992
OF OUR TWO-DAY NICHD ADVISORY

5486
03:34:28,992 --> 03:34:29,526
COUNCIL MEETING.

5487
03:34:29,526 --> 03:34:32,229
I THANK YOU ALL FOR ATTENDING

5488
03:34:32,229 --> 03:34:33,931
AND LOOK FORWARD TO SEEING

5489
03:34:33,931 --> 03:34:35,098
EVERYONE TOMORROW AT 9:00 A.M.

5490
03:34:35,098 --> 03:34:36,567
FOR CLOSED SESSION.

5491
03:34:36,567 --> 03:34:38,302
START TIME WILL BE 9:00 A.M.

5492
03:34:38,302 --> 03:34:39,536
EASTERN STANDARD TIME.

5493
03:34:39,536 --> 03:34:44,308
THANK YOU FOR THE INDULGENCE OF

5494
03:34:44,308 --> 03:34:45,843
THOSE ON THE WEST COAST FOR THE

5495
03:34:45,843 --> 03:34:47,144
EARLY START.

5496
03:34:47,144 --> 03:34:48,679
HAVE A GREAT EVENING, EVERYONE.

5497
03:34:48,679 --> 03:34:58,679
>> THANK YOU, SEE YOU
TOMORROW.