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>>I WANT TO WELCOME EOPLE TO

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THE 218TH MEETING OF THE

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NATIONAL ADVISORY COUNCIL FOR

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THE NEUROLOGICAL DISORDERS AND

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STROKE.

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I WANT TO MENTION I THINK WE'RE

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FIVE AWAY FROM 2025, WHICH IS

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OUR 75TH ANNIVERSARY.

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WE'RE ALREADY THINKING OF TRYING

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TO DO SOMETHING SPECIAL FOR THAT

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MOMENTOUS OCCASION TO KIND OF

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CELEBRATE AND THINK FORWARD

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ABOUT THE GREAT STUFF OUR

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GRANTEES AND STAFF HAVE DONE

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OVER THE LAST 75 YEARS AND ARE

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POISED TO DO IN THE FUTURE.

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FIRST THING I WANT TO DO IS TO

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INTRODUCE THE COUNCIL AD HOCS.

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THESE ARE FOLKS THAT HAVE THEIR

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APPLICATION DOWNTOWN TO HH S AND

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HOPEFULLY WILL BE COMING ON

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OFFICIALLY VERY SHORTLY.

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I CAN JUST SEE THE DESKS

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DOWNTOWN WITH ALL THESE STACKS

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OF PAPER AND SOMEWHERE IN THERE

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IS HANK OR HENRY GREELEY, JOHN

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SORE PROFESSOR OF LAW AT

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STANFORD UNIVERSITY, ALSO

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PROFESSOR BY COURTESY IN

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GENETICS AT STANFORD SCHOOL OF

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MEDICINE.

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HE SPECIALIZES IN ETHICAL, LEGAL

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AND SOCIAL IMPLICATION OF NEW

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BIOMEDICAL TECHNOLOGIES,

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PARTICULARLY THOSE RELATED TO

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GENETICS ASSOCIATED WITH

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REPRODUCTION, NEUROSCIENCE, AND

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STEM CELL RESEARCH.

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HANK WAS A FOUNDING MEMBER OF

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THE NIH BRAIN MULTI-COUNCIL

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WORKING GROUP AND THE FOUNDING

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CHAIR OF THE BRAIN NEUROETHICS

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WORKING GROUP, AND HE'S ALSO A

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FOUNDER AND PAST PRESIDENT OF

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THE INTERNATIONAL NEUROETHICS

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SOCIETY, HE RECEIVED HIS LAW

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DEGREE FROM YALE LAW SCHOOL AND

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HE HAS A SLIGHT DEFORMITY OF HIS

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LIP, HE'LL BE TWISTING IT ALL

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THE TIME HAVING TO ASK HIM TO DO

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THINGS FOR NANDS, SO REALLY

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LOOKING FORWARD TO HAVING HANK

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JOINING US.

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NEXT IS HENRY PAULSON, WHO ALSO

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GOES BY HANK.

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PROFESSOR OF NEUROLOGY FOR

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ALZHEIMER'S DISEASE AND RELATED

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DEMENTIAS, IN THE DEPARTMENT OF

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NEUROLOGY AT THE UNIVERSITY OF

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MICHIGAN.

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HE DIRECTS THE MICHIGAN

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ALZHEIMER'S DISEASE CENTER AND

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HE CO-DIRECTS THE MICHIGAN

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NEUROSCIENCE INSTITUTE.

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HANK ALSO WAS THE CHAIR OF THE

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NINDS INTRAMURAL BOARD OF

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SCIENTIFIC COUNSELORS, SO HE

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KNOWS OUR INTRAMURAL PROGRAM

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WELL, AND HE RECEIVED HIS

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MEDICAL AND DOCTORATE DEGREE

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ALSO FROM YALE.

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NEXT IS JANE LARKINDALE, VICE

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PRESIDENT OF CLINICAL SCIENCE AT

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P E-PG EN, A BIOTECH COMPANY

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FOCUSING ON DEVELOPING

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TREATMENTS FOR NEUROMUSCULAR

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DISEASES.

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PRIOR TO JOINING PEP GEN, SHE

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WORKED FOR THE EXECUTIVE

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DIRECTOR FOR THE RARE DISEASE

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CURES ACCELERATOR DATA AND

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ANALYTICS PLATFORM AT THE

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CRITICAL PATH INSTITUTE, WHICH

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WE'LL BE TALKING ABOUT LATER

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THIS AFTERNOON.

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SHE IS A MOLECULAR BIOLOGIST BY

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TRAINING, COMPLETING HER PH.D.

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AT OXFORD.

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AND SHE ATTENDED ON A RHODES

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SCHOLAR SHIP.

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NEXT, PLEASED TO INTRODUCE

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JIN-MOO LEE, PROFESSOR OF

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NEUROLOGY AT WASHINGTON

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UNIVERSITY SCHOOL OF MEDICINE IN

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ST. LOUIS AND ALSO PROFESSOR OF

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RADIOLOGY, AND HE'S THE CHAIR OF

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THE DEPARTMENT OF NEUROLOGY AND

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NEUROLOGIST IN CHIEF AT BARNES

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U.S. HOSPITAL.

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PRIOR TO BECOMING THE DEPARTMENT

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CHAIR, DR. LEE WAS THE CO-CHAIR

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FOR THE STROKE CARE CLINICAL

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PROGRAM AT BJC HEALTHCARE IN

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MISSOURI.

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HIS LAB FOCUSES ON

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PATHOPHYSIOLOGY AND CELLULAR

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MOLECULAR MECHANISMS INVOLVED IN

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BRAIN INJURY FOLLOWING ACUTE

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ISCHEMIA AND CHRONIC

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NEURODEGENERATION.

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HE EARNED HIS M.D. AND PH.D. IN

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NEUROSCIENCE AT WEILL CORNELL

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MEDICAL COLLEGE, LOOKING FORWARD

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TO HIM JOINING.

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LAST TO ANNOUNCE IS YISHI JIN,

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GOES BY JIN, PROFESSOR IN THE

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DEPARTMENT OF NEUROBIOLOGY AND

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DEPARTMENT OF CELLULAR AND

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MOLECULAR MEDICINE.

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SHE HOSHE'S CO-DIRECTOR OF THE Y

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INSTITUTE OF BRAIN AND MIND BASE

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AT UCSD.

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HER RESEARCH FOCUSES ON

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NEURODEVELOPMENT IN THE C.

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ELEGANS, AND SHE RECEIVED THE

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NSF PRESIDENTIAL EARLY CAREER

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AWARD FOR SCIENTISTS AND

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ENGINEERS, AND SHE COMPLETED HER

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PH.D. IN MOLECULAR BIOLOGY AT

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THE UNIVERSITY OF CALIFORNIA,

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BERKELEY.

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SO WHAT A GREAT GROUP WE HAVE

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JOINING, AND THANKS IN ADVANCE

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FOR ALL THE WORK WE'LL GIVE YOU

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TO DO!

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SO WITH THAT, BOB, I'LL TURN IT

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OVER TO YOU.

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>>THANKS A LOT, WALTER.

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AND IT IS REALLY GREAT TO SEE

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EVERYBODY.

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NEXT TIME HOPEFULLY IN PERSON.

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THAT WILL BE GREAT.

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JUST MENTIONING ONE THING ABOUT

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THE NEW COUNCIL AD HOCS, AD HOC

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MEANS YOU CAN PARTICIPATE FULLY

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IN ALL THE DISCUSSIONS, YOU JUST

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CAN'T FORMALLY VOTE WHEN WE VOTE

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ON THINGS, AND THAT'S ALSO TRUE

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IN THE CLOSED SESSION TOMORROW.

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BUT IT'S GREAT TO HAVE ALL OF

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YOU.

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JUST MY USUAL REMINDER THAT THIS

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IS ALL BEING VIDEOCAST AND

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ARCHIVED, SO LOOK GOOD, BE GOOD,

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ET CETERA, ET CETERA.

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EVERYBODY HAS ZOOM DOWN BY NOW

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SO I'M NOT GOING TO SAY MUCH

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ABOUT THAT.

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I'LL JUST SAY THAT IF YOU WANT

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TO SAY ANYTHING OR MAKE A

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MOTION, YOU CAN EITHER JUST

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SPEAK UP OR USE YOUR EMOJI HAND.

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IT'S BETTER WHEN YOU USE YOUR

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EMOJI HAND THAN YOUR REAL HAND

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BECAUSE IT PUTS YOU IN A PLACE

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WHERE I CAN SEE YOU.

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YOU'LL BE VOTING IN THE CHAT.

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TIM IS GOING TO ENTER EVERY

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MOTION IN THE CHAT AND THEN YOU

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CAN VOTE.

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 ACCORDINGLY.

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OKAY.

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SO THE FIRST THING I NEED IS

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YOUR APPROVAL OF THE MINUTES

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FROM THE LAST COUNCIL MEETING,

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WHICH ARE IN THE ECB.

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AND UNLESS ANYONE WANTS TO

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DISCUSS THE MINUTES?

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I'LL PAUSE FOR A SECOND.

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I NEED A MOTION TO APPROVE THEM.

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>>SO MOVED.

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>>I SEE TIM.

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IS THERE A SECOND?

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>>SECOND.

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>>GOING ONCE, GOING
TWICE,

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OKAY, EVERYONE VOTE IN THE CHAT.

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LOUISE, DO YOU HAVE A QUESTION?

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OH, YOU WERE RAISING YOUR EMOJI

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HAND FOR -- OKAY.

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OKAY.

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SO WE SUCCESSFULLY APPROVED THE

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MINUTES.

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THAT'S ALWAYS GREAT TO GET OFF

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TO A GOOD START.

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NEXT THING IS THE DATES FOR

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FUTURE COUNCIL MEETINGS.

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I ALREADY MENTIONED THE DATES

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FOR THE NEXT ONE.

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NOTICE THAT WE'RE GOING TO

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CONTINUE TO HAVE THEM ON

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WEDNESDAYS AND THURSDAYS.

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ON TWO CONSECUTIVE DAYS.

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SO IF YOU HAVE A PROBLEM WITH

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ANY OF THESE DATES, DO LET TIM

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KNOW BECAUSE WE NEED TO PLAN

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ACCORDINGLY.

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IN TERMS OF MAY, WE REALLY DO

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WANT TO HAVE THE MEETING IN

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PERSON.

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OBVIOUSLY THIS DEPENDS ON COVID

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TRENDS, BUT WE'LL KEEP IN TOUCH

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AND LET YOU KNOW.

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AND WE'RE ACTUALLY THINKING THAT

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WE SHOULD HAVE AT LEAST ONE

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MEETING IN PERSON A YEAR, BUT

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WE'LL DISCUSS THE DETAILS OF

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THAT MORE LATER.

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OKAY.

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I'M GOING TO GO ON TO ALL MY

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BOILERPLATE STUFF.

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THE FIRST THING, AND I'LL TALK

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FAST BECAUSE THERE'S ACTUALLY A

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LOT THAT I NEED TO SAY.

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SO THE FIRST THING IS THE

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EXPEDITED REVIEW PROCESS, SO AS

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YOU KNOW, WE REPORT ON THIS

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PROCESS OR ARE REQUIRED TO

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REPORT ON THIS AT EVERY COUNCIL

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MEETING.

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THIS IS WHEN A SUBSET OF

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COUNCILMEMBERS APPROVE

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APPLICATIONS IN ADVANCE OF THE

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NORMAL SCHEDULE, IN FACT IN

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ADVANCE OF THE COUNCIL MEETING

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FOR FUNDING, AND THAT ALLOWS OUR

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GRANTS MANAGEMENT BRANCH TO

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ISSUE THEM MORE QUICKLY SO THE

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RESEARCH CAN GET STARTED.

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WE USUALLY FOCUS ON THINGS LIKE

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R01s WITHIN THE PAYLINE, WHICH

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HAVE NO ANIMAL ISSUES OR HUMAN

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SUBJECTS ISSUES.

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SO THEY GOT GREAT SCORES AND WE

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JUST WANT TO GET THEM FUNDED.

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WE ROTATE THE TASK AMONG THREE

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COUNCILMEMBERS EVERY TIME.

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THIS TIME AROUND, IT WAS -- THIS

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YEAR IT'S KEN, JOHN AND H EKEMI.

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WE'RE WELL ON TRACK TO ISSUING

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THESE OR ISSUING THEM VERY SOON.

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EVERY TIME WE CAN DO THIS AHEAD

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OF SCHEDULE BECAUSE OF OUR GREAT

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GRANTS MANAGEMENT BRANCH LED BY

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SHELLEY WHO YOU'LL HEAR FROM IN

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A MOMENT AND ALSO TO OUR PROGRAM

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STAFF WHO DO A GREAT JOB MAKING

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SURE THESE APPLICATIONS MEET THE

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CRITERIA FOR BEING EXPEDITED.

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OKAY.

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SO IN TERMS OF ANNOUNCEMENTS, WE

261
00:09:15,840 --> 00:09:17,480
USED TO INTRODUCE ALL OUR NEW

262
00:09:17,480 --> 00:09:20,080
STAFF BUT IN THESE STREAMLINED

263
00:09:20,080 --> 00:09:21,320
SHORTENED VIRTUAL MEETINGS, WE

264
00:09:21,320 --> 00:09:23,400
JUST PUT THEIR DESCRIPTIONS IN

265
00:09:23,400 --> 00:09:24,160
THE ECB.

266
00:09:24,160 --> 00:09:25,680
I THINK THERE'S ACTUALLY A SLIDE

267
00:09:25,680 --> 00:09:27,160
LISTING ALL OF THE NEW STAFF, IS

268
00:09:27,160 --> 00:09:28,480
THAT RIGHT?

269
00:09:28,480 --> 00:09:31,480
THERE GOES KEVIN.

270
00:09:31,480 --> 00:09:34,000
SO YOU CAN SEE, THERE'S A COUPLE

271
00:09:34,000 --> 00:09:35,440
IN THE DIVISION OF CLINICAL

272
00:09:35,440 --> 00:09:36,840
RESEARCH, A FEW IN TRANSLATIONAL

273
00:09:36,840 --> 00:09:38,120
RESEARCH, A BUNCH IN MY

274
00:09:38,120 --> 00:09:39,920
DIVISION, WHICH IS EXTRAMURAL

275
00:09:39,920 --> 00:09:44,080
ACTIVITIES, AND ALSO IN OUR

276
00:09:44,080 --> 00:09:45,800
COMMUNICATIONS OFFICE AND

277
00:09:45,800 --> 00:09:48,320
FINALLY THE BIGGEST GROUP IS IN

278
00:09:48,320 --> 00:09:50,600
OUR DIVISION OF NEUROSCIENCE.

279
00:09:50,600 --> 00:09:53,800
SO ALL THESE PEOPLE HAVE VERY

280
00:09:53,800 --> 00:09:54,800
IMPRESSIVE BIOS, AND YOU'RE

281
00:09:54,800 --> 00:09:56,000
WELCOME TO READ ABOUT THEM IN

282
00:09:56,000 --> 00:09:56,960
THE ECB.

283
00:09:56,960 --> 00:09:57,520
OKAY.

284
00:09:57,520 --> 00:10:02,000
KEVIN, YOU CAN TAKE THAT DOWN.

285
00:10:02,000 --> 00:10:03,280
SO THE ONE THING I DON'T WANT TO

286
00:10:03,280 --> 00:10:05,240
SKIP IS SAYING GOODBYE TO SOME

287
00:10:05,240 --> 00:10:08,760
REALLY GREAT PEOPLE WHO ARE

288
00:10:08,760 --> 00:10:09,000
LEAVING.

289
00:10:09,000 --> 00:10:10,080
WE'LL DO THAT RELATIVELY QUICKLY

290
00:10:10,080 --> 00:10:11,640
BUT I THINK IT'S IMPORTANT TO

291
00:10:11,640 --> 00:10:12,520
MENTION THESE PEOPLE WHO HAVE

292
00:10:12,520 --> 00:10:13,720
MANY YEARS OF DEDICATED SERVICE

293
00:10:13,720 --> 00:10:14,880
TO OUR INSTITUTE.

294
00:10:14,880 --> 00:10:15,920
THE FIRST ONE, I HOPE HE'S IN

295
00:10:15,920 --> 00:10:16,760
THE MEETING.

296
00:10:16,760 --> 00:10:18,520
THE FIRST ONE IS GOING TO BE

297
00:10:18,520 --> 00:10:21,360
SPOKEN OF BY ERNIE LYONS, THE

298
00:10:21,360 --> 00:10:22,880
HEAD OF OUR REVIEW BRANCH, ONE

299
00:10:22,880 --> 00:10:25,520
OF OUR TERRIFIC SROs IS SADLY

300
00:10:25,520 --> 00:10:26,800
LEAVING, ACTUALLY IT'S FOR A

301
00:10:26,800 --> 00:10:28,120
PROMOTION BUT I'LL LETTER KNEE

302
00:10:28,120 --> 00:10:32,840
EXPLALET ERNIEEXPLAIN ALL OF TH.

303
00:10:32,840 --> 00:10:33,720
HI, ERNIE.

304
00:10:33,720 --> 00:10:37,080
>>HELLO, EVERYONE.

305
00:10:37,080 --> 00:10:39,400
AND MARILYN IS ON AS WELL, I

306
00:10:39,400 --> 00:10:39,640
BELIEVE.

307
00:10:39,640 --> 00:10:40,800
>>I SEE HER.

308
00:10:40,800 --> 00:10:42,480
>>OKAY, GREAT.

309
00:10:42,480 --> 00:10:44,280
SO I'M THE CHIEF OF REVIEW HERE

310
00:10:44,280 --> 00:10:44,960
AT NINDS.

311
00:10:44,960 --> 00:10:46,320
I'VE BEEN HERE FOR A LONG TIME.

312
00:10:46,320 --> 00:10:49,560
I KNOW MANY OF YOU.

313
00:10:49,560 --> 00:10:51,320
SO I WANTED TO TAKE A MINUTE TO

314
00:10:51,320 --> 00:10:54,160
JUST ACKNOWLEDGE AND THANK

315
00:10:54,160 --> 00:10:57,000
MARILYN MOOREHOON, SRO IN OUR

316
00:10:57,000 --> 00:10:59,320
BRANCH FOR THE PAST 4 1/2 YEARS.

317
00:10:59,320 --> 00:11:03,240
SHE JOINED US AS AN EXPERIENCED

318
00:11:03,240 --> 00:11:04,200
SRO.

319
00:11:04,200 --> 00:11:05,840
SHE HAD BEEN A SRO PREVIOUSLY

320
00:11:05,840 --> 00:11:06,960
FOR ABOUT EIGHT YEARS AND I'D

321
00:11:06,960 --> 00:11:08,280
KNOWN MARILYN FOR A LONG TIME

322
00:11:08,280 --> 00:11:12,760
THROUGH OUR WORK ON TRANS-NIH

323
00:11:12,760 --> 00:11:14,680
COMMITTEE, I WAS ALWAYS VERY

324
00:11:14,680 --> 00:11:16,040
IMPRESSED WITH HER WORK.

325
00:11:16,040 --> 00:11:17,120
MARILYN JOINED US DURING THIS

326
00:11:17,120 --> 00:11:20,320
TIME OF RAPID EXPANSION IN SRB.

327
00:11:20,320 --> 00:11:21,520
WE WERE TAKING ON REVIEW OF ALL

328
00:11:21,520 --> 00:11:23,360
THESE NEW PROGRAMS, THE BRAIN

329
00:11:23,360 --> 00:11:27,000
INITIATIVE, ADRD, THE HEAL

330
00:11:27,000 --> 00:11:29,320
INITIATIVE.

331
00:11:29,320 --> 00:11:33,120
AND WE EXPANDED OUR BRANCH,

332
00:11:33,120 --> 00:11:35,320
FORMED NEW GROUPS MUCH LIKE SCR

333
00:11:35,320 --> 00:11:37,320
REVIEW TEAMS AND MARILYN WAS ONE

334
00:11:37,320 --> 00:11:41,240
OF OUR INITIAL TEAM LEADS.

335
00:11:41,240 --> 00:11:43,440
SHE'S AN EXTREMELY TALL EBT

336
00:11:43,440 --> 00:11:46,800
ENTED SRO, SHE RAN MANY OF OUR

337
00:11:46,800 --> 00:11:49,080
VERY COMPLICATED PROGRAMS,

338
00:11:49,080 --> 00:11:50,440
CENTERS OF EXCELLENCE FOR

339
00:11:50,440 --> 00:11:51,080
PARKINSON'S DISEASE AND MANY

340
00:11:51,080 --> 00:11:51,720
OTHERS.

341
00:11:51,720 --> 00:11:55,240
SHE'S EXTREMELY KNOWLEDGEABLE

342
00:11:55,240 --> 00:11:56,680
ABOUT REVIEW POLICY AND

343
00:11:56,680 --> 00:12:00,360
PROCEDURES AND PROCESS, AND SHE

344
00:12:00,360 --> 00:12:02,360
WAS TREMENDOUSLY HELPFUL TO THE

345
00:12:02,360 --> 00:12:04,960
SRB DURING THE EXPANSION, AND

346
00:12:04,960 --> 00:12:07,040
HAS REALLY DONE A LOT TO SUPPORT

347
00:12:07,040 --> 00:12:10,760
THE MISSION AT NINDS IN THESE

348
00:12:10,760 --> 00:12:12,080
PAST 4 1/2 YEARS.

349
00:12:12,080 --> 00:12:15,040
AND SHE HAS JUST LEFT US IN

350
00:12:15,040 --> 00:12:16,240
JANUARY, STARTING THIS YEAR.

351
00:12:16,240 --> 00:12:17,560
SHE'S NOW AT THE NATIONAL CENTER

352
00:12:17,560 --> 00:12:19,480
FOR ADVANCING TRANSLATIONAL

353
00:12:19,480 --> 00:12:22,600
SCIENCE, WHERE SHE IS NEW REVIEW

354
00:12:22,600 --> 00:12:25,320
CHIEF AND I'M SURE SHE'LL

355
00:12:25,320 --> 00:12:26,400
CONTINUE TO DO OUTSTANDING WORK

356
00:12:26,400 --> 00:12:28,720
AS THE CHIEF OF SRB THERE, SO

357
00:12:28,720 --> 00:12:29,360
CONGRATULATIONS, MARILYN, AND

358
00:12:29,360 --> 00:12:30,560
THANK YOU FOR ALL OF YOUR

359
00:12:30,560 --> 00:12:31,320
OUTSTANDING WORK.

360
00:12:31,320 --> 00:12:31,760
>>YES.

361
00:12:31,760 --> 00:12:32,440
>>THANK YOU.

362
00:12:32,440 --> 00:12:33,960
>>WE WILL REALLY MISS
YOU,

363
00:12:33,960 --> 00:12:34,920
MARILYN.

364
00:12:34,920 --> 00:12:36,920
>>AND I'LL MISS YOU GUYS
TOO.

365
00:12:36,920 --> 00:12:37,760
>>YES.

366
00:12:37,760 --> 00:12:39,080
I'M ALWAYS A LITTLE NERVOUS

367
00:12:39,080 --> 00:12:40,600
AROUND MARILYN BECAUSE SHE'S SO

368
00:12:40,600 --> 00:12:40,960
SHARP.

369
00:12:40,960 --> 00:12:43,800
YOU REALLY HAVE TO BE ON YOUR

370
00:12:43,800 --> 00:12:45,120
TOES WHEN YOU'RE TALKING TO HER.

371
00:12:45,120 --> 00:12:45,800
OKAY.

372
00:12:45,800 --> 00:12:49,680
THAT'S MARILYN.

373
00:12:49,680 --> 00:12:54,840
NEXT, SHELBY WILBURN IS GOING TO

374
00:12:54,840 --> 00:12:55,840
SPEAK BRIEFLY ABOUT TWO PEOPLE

375
00:12:55,840 --> 00:12:56,800
THAT ARE SPEAKING.

376
00:12:56,800 --> 00:13:02,720
IS SHELLEY ON SOMEWHERE?

377
00:13:02,720 --> 00:13:04,480
OKAY, TIM, MAKE SURE SHELLEY HAS

378
00:13:04,480 --> 00:13:05,520
AN INVITE TO THE MEETING.

379
00:13:05,520 --> 00:13:07,400
I'LL GO ON TO THE NEXT ONE WHILE

380
00:13:07,400 --> 00:13:08,560
WE'RE TRYING TO FIGURE THAT OUT.

381
00:13:08,560 --> 00:13:10,720
>>I THINK SHELLEY IS GOOD
TO GO

382
00:13:10,720 --> 00:13:10,880
NOW.

383
00:13:10,880 --> 00:13:11,680
>>OKAY.

384
00:13:11,680 --> 00:13:12,880
IS SHE ON THE SCREEN?

385
00:13:12,880 --> 00:13:17,040
I'M NOT SEEING HER.

386
00:13:17,040 --> 00:13:19,000
BUT CAN WE HEAR SHELLIE?

387
00:13:19,000 --> 00:13:19,760
CAN YOU SAY SOMETHING?

388
00:13:19,760 --> 00:13:21,000
>>I JUST GOT ACCESS.

389
00:13:21,000 --> 00:13:22,520
SORRY ABOUT THAT.

390
00:13:22,520 --> 00:13:26,040
SO YES.

391
00:13:26,040 --> 00:13:27,320
TWO DEPARTURES SINCE THE LAST

392
00:13:27,320 --> 00:13:30,400
COUNCIL MEETING.

393
00:13:30,400 --> 00:13:35,960
THE FIRST IS OLAMIDA ADENEA WHO

394
00:13:35,960 --> 00:13:37,080
MANAGED OUR BRAIN PORTFOLIO.

395
00:13:37,080 --> 00:13:38,360
SHE WAS DEFINITELY A TRUE ASSET

396
00:13:38,360 --> 00:13:38,800
TO THE ORGANIZATION.

397
00:13:38,800 --> 00:13:43,080
SHE HAD BEEN HERE FOR 14 YEARS.

398
00:13:43,080 --> 00:13:44,480
AND SHE WILL DEFINITELY BE

399
00:13:44,480 --> 00:13:47,000
MISSED WITHIN THE ORGANIZATION.

400
00:13:47,000 --> 00:13:55,760
AND THE SECOND IS ERNA

401
00:13:55,760 --> 00:13:57,200
PETHRIDGE, HELPING US WITH OUR

402
00:13:57,200 --> 00:13:58,040
TRANSACTIONS AWARDS WITHIN THE

403
00:13:58,040 --> 00:13:58,480
ORGANIZATION.

404
00:13:58,480 --> 00:13:59,480
SHE WAS ONLY HERE A FEW YEARS

405
00:13:59,480 --> 00:14:02,000
BUT SHE MADE A TREMENDOUS IMPACT

406
00:14:02,000 --> 00:14:03,000
ON THE ORGANIZATION AS WELL, AND

407
00:14:03,000 --> 00:14:04,920
THEY WILL BOTH BE MISSED AND

408
00:14:04,920 --> 00:14:06,640
THEY'RE BOTH IRREPLACEABLE.

409
00:14:06,640 --> 00:14:06,960
THANK YOU.

410
00:14:06,960 --> 00:14:08,440
>>BOTH ABSOLUTELY
TERRIFIC

411
00:14:08,440 --> 00:14:08,760
EMPLOYEES.

412
00:14:08,760 --> 00:14:10,880
LAST BUT NOT LEAST IS CLINT

413
00:14:10,880 --> 00:14:12,840
WRIGHT, THE HEAD OF OUR CLINICAL

414
00:14:12,840 --> 00:14:13,560
RESEARCH DIVISION, IS GOING TO

415
00:14:13,560 --> 00:14:16,360
TALK ABOUT ANOTHER SAD,

416
00:14:16,360 --> 00:14:17,440
BITTERSWEET DEPARTURE.

417
00:14:17,440 --> 00:14:19,360
>>BITTERSWEET INDEED.

418
00:14:19,360 --> 00:14:21,920
I WANTED TO THANK JANICE CORDELL

419
00:14:21,920 --> 00:14:23,440
ON HER RETIREMENT.

420
00:14:23,440 --> 00:14:27,040
SHE RETIRED AFTER 34 YEARS OF

421
00:14:27,040 --> 00:14:29,640
SERVICE AT NIH.

422
00:14:29,640 --> 00:14:30,960
SHE HAD BEEN WITH THE DIVISION

423
00:14:30,960 --> 00:14:33,080
OF CLINICAL RESEARCH SINCE 2002,

424
00:14:33,080 --> 00:14:34,800
AS A NURSE CONSULTANT AND

425
00:14:34,800 --> 00:14:37,520
CLINICAL RESEARCH PROJECT

426
00:14:37,520 --> 00:14:41,360
MANAGER, AND SHE SAW A LOT OF

427
00:14:41,360 --> 00:14:43,480
PROGRAMS FROM THE START,

428
00:14:43,480 --> 00:14:46,960
INCLUDING NEURONEXT, OUR GENERAL

429
00:14:46,960 --> 00:14:47,720
NEUROLOGY CLINICAL TRIAL NETWORK

430
00:14:47,720 --> 00:14:49,920
BUT SHE ALSO LED DSMBs AND WAS

431
00:14:49,920 --> 00:14:51,440
VERY, VERY HELPFUL THROUGH MANY

432
00:14:51,440 --> 00:14:53,200
DISCUSSIONS WITH OTHER GROUPS

433
00:14:53,200 --> 00:14:55,920
INCLUDING INDUSTRY AND OTHER

434
00:14:55,920 --> 00:14:58,560
PARTNERSHIPS WITH PRIVATE

435
00:14:58,560 --> 00:14:59,000
FOUNDATIONS.

436
00:14:59,000 --> 00:15:00,840
SO REALLY GOING TO MISS HER AND

437
00:15:00,840 --> 00:15:04,240
ARE MISSING HER, AND WANTED TO

438
00:15:04,240 --> 00:15:05,360
JUST ACKNOWLEDGE HER WONDERFUL

439
00:15:05,360 --> 00:15:06,680
SERVICE TO THE INSTITUTE AND TO

440
00:15:06,680 --> 00:15:07,440
NIH.

441
00:15:07,440 --> 00:15:08,520
THANKS, BOB.

442
00:15:08,520 --> 00:15:11,480
>>THANKS, CLINT.

443
00:15:11,480 --> 00:15:13,000
JANICE HAS BEEN A REAL PILLAR OF

444
00:15:13,000 --> 00:15:14,320
CLINICAL RESEARCH HERE AT THE

445
00:15:14,320 --> 00:15:17,440
INSTITUTE, AND WILL BE MISSED.

446
00:15:17,440 --> 00:15:18,120
OKAY.

447
00:15:18,120 --> 00:15:19,200
GOODBYE AND CONGRATULATIONS TO

448
00:15:19,200 --> 00:15:20,040
ALL OF YOU.

449
00:15:20,040 --> 00:15:22,800
I JUST REALIZED THAT WE HAVE --

450
00:15:22,800 --> 00:15:23,920
SPEAKING OF THE CONFUSION

451
00:15:23,920 --> 00:15:25,360
BETWEEN HANKS ON COUNCIL, WE

452
00:15:25,360 --> 00:15:27,400
ALSO HAVE TWO KEVINS HELPING US

453
00:15:27,400 --> 00:15:29,520
WITH I.T., AND THE ONE SHOWING

454
00:15:29,520 --> 00:15:31,880
THE SLIDE ACTUALLY I BELIEVE IS

455
00:15:31,880 --> 00:15:35,280
KEVIN BISCANO, NOT KEVIN POWELL,

456
00:15:35,280 --> 00:15:37,840
SO SORRY FOR THE FAUX PAS,

457
00:15:37,840 --> 00:15:38,160
KEVIN.

458
00:15:38,160 --> 00:15:39,680
THE LAST THING I WANT TO MENTION

459
00:15:39,680 --> 00:15:41,200
IS WHAT'S CALLED OUR COUNCIL

460
00:15:41,200 --> 00:15:45,800
OPERATING PROCEDURES, WHICH ARE

461
00:15:45,800 --> 00:15:47,440
ESSENTIALLY THE GROUND RULES BY

462
00:15:47,440 --> 00:15:50,840
WHICH WE INTERACT AT THE

463
00:15:50,840 --> 00:15:52,680
INSTITUTE AND ON COUNCIL.

464
00:15:52,680 --> 00:15:55,960
THIS YEAR WE USUALLY MAKE LITTLE

465
00:15:55,960 --> 00:15:57,160
TWEAKS TO THEM EVERY YEAR OR SO.

466
00:15:57,160 --> 00:15:58,160
WHAT WE'D LIKE TO DO THIS YEAR

467
00:15:58,160 --> 00:16:00,920
IS TO MAKE A MINOR CHANGE TO

468
00:16:00,920 --> 00:16:03,720
THESE DELEGATE AUTHORITIES.

469
00:16:03,720 --> 00:16:06,360
SO THESE ARE THE ACTIONS THAT --

470
00:16:06,360 --> 00:16:08,120
THE DELEGATED AUTHORITIES ARE

471
00:16:08,120 --> 00:16:10,280
THE ACTIONS COUNCIL ALLOWS US TO

472
00:16:10,280 --> 00:16:11,840
TAKE WITHOUT EXPLICIT COUNCIL

473
00:16:11,840 --> 00:16:12,720
APPROVAL, FOR EXAMPLE, BECAUSE

474
00:16:12,720 --> 00:16:14,320
THEY'RE TIME-SENSITIVE.

475
00:16:14,320 --> 00:16:15,240
SO ONE EXAMPLE IS THAT WE'RE

476
00:16:15,240 --> 00:16:17,640
ALLOWED TO GIVE ADMINISTRATIVE

477
00:16:17,640 --> 00:16:20,720
SUPPLEMENTS TO GRANTS FOR UP TO

478
00:16:20,720 --> 00:16:24,920
$100,000.

479
00:16:24,920 --> 00:16:26,360
SO FOR EXAMPLE IF A LAB HAS A

480
00:16:26,360 --> 00:16:28,280
CRISIS WHERE THEY LOSE A BIG

481
00:16:28,280 --> 00:16:30,520
PIECE OF MACHINERY OR THEY LOSE

482
00:16:30,520 --> 00:16:32,360
AN ANIMAL COLONY AND MAKE A

483
00:16:32,360 --> 00:16:33,360
REASONABLY REQUEST, WE CAN

484
00:16:33,360 --> 00:16:34,360
USUALLY TURN IT AROUND QUICKLY

485
00:16:34,360 --> 00:16:35,200
BECAUSE WE DON'T HAVE TO WAIT

486
00:16:35,200 --> 00:16:36,520
FOR A COUNCIL MEETING SO WE HAVE

487
00:16:36,520 --> 00:16:37,720
A SMALL BUDGET FOR THAT.

488
00:16:37,720 --> 00:16:39,240
AND IF THE REQUEST FOR A

489
00:16:39,240 --> 00:16:41,120
SUPPLEMENT IS FOR MORE THAN

490
00:16:41,120 --> 00:16:42,760
$100,000, WE BRING TO COUNCIL.

491
00:16:42,760 --> 00:16:44,440
EITHER WE DISCUSS IT AT COUNCIL,

492
00:16:44,440 --> 00:16:46,160
WE'LL ACTUALLY HAVE ONE EXAMPLE

493
00:16:46,160 --> 00:16:48,440
TOMORROW, OR WE PUT IT ON THE

494
00:16:48,440 --> 00:16:51,160
MISCELLANEOUS LIST AND WE REVIEW

495
00:16:51,160 --> 00:16:54,120
IT THAT WAY THROUGH COUNCIL.

496
00:16:54,120 --> 00:16:56,200
WHAT WE WANT TO ASK FOR TODAY IS

497
00:16:56,200 --> 00:16:57,440
ESSENTIALLY AN ANALOGOUS

498
00:16:57,440 --> 00:17:02,440
AUTHORITY FOR SMALL COFAs

499
00:17:02,440 --> 00:17:03,960
GRANTS, PARTICULARLY GRANTS TO

500
00:17:03,960 --> 00:17:05,520
OTHER INSTITUTES.

501
00:17:05,520 --> 00:17:07,360
SO I'LL GIVE YOU AN EXAMPLE, IF

502
00:17:07,360 --> 00:17:09,000
ANOTHER INSTITUTE IS FUNDING AN

503
00:17:09,000 --> 00:17:09,880
R-13 GRANT, WHICH IS A

504
00:17:09,880 --> 00:17:13,240
CONFERENCE GRANT, LET'S SAY IT'S

505
00:17:13,240 --> 00:17:15,560
ON NEUROFIBROMATOSIS AND THEY

506
00:17:15,560 --> 00:17:16,440
WANT COFUNDS FROM OTHER

507
00:17:16,440 --> 00:17:17,640
INSTITUTES WHO HAVE A STAKE IN

508
00:17:17,640 --> 00:17:19,080
THIS PARTICULAR AREA OF DISEASE

509
00:17:19,080 --> 00:17:20,920
RESEARCH OR BASIC RESEARCH, WE

510
00:17:20,920 --> 00:17:22,560
DO THAT BY CO-FUNDING ONE OF

511
00:17:22,560 --> 00:17:23,120
THEIR GRANTS.

512
00:17:23,120 --> 00:17:25,720
THE MONEY IS OFTEN USED TO BRING

513
00:17:25,720 --> 00:17:28,720
IN NEUROSCIENCE SPEAKERS OR

514
00:17:28,720 --> 00:17:29,760
NEUROLOGY SPEAKERS, AND THESE

515
00:17:29,760 --> 00:17:31,880
SMALL COFUNDS ARE USUALLY

516
00:17:31,880 --> 00:17:32,320
TIME-SENSITIVE.

517
00:17:32,320 --> 00:17:36,040
WE HAVE TO SYNC WITH THE OTHER

518
00:17:36,040 --> 00:17:36,920
INSTITUTE'S CALENDAR SO IT'S

519
00:17:36,920 --> 00:17:37,760
VERY DIFFICULT TO WAIT FOR A

520
00:17:37,760 --> 00:17:38,400
COUNCIL MEETING.

521
00:17:38,400 --> 00:17:40,960
SO AGAIN, IF THE PROPOSED

522
00:17:40,960 --> 00:17:42,800
CO-FUND EXCEEDS $100,000, WE

523
00:17:42,800 --> 00:17:44,880
WOULD BRING TO COUNCIL TO GET IT

524
00:17:44,880 --> 00:17:46,280
APPROVED.

525
00:17:46,280 --> 00:17:48,160
SO ARE THERE ANY QUESTIONS ABOUT

526
00:17:48,160 --> 00:17:48,600
THAT?

527
00:17:48,600 --> 00:17:51,120
I DO NEED TO ASK FOR A FORMAL

528
00:17:51,120 --> 00:17:52,200
MOTION TO APPROVE.

529
00:17:52,200 --> 00:17:53,280
ARE THERE ANY QUESTIONS ABOUT

530
00:17:53,280 --> 00:17:54,720
WHAT I'M TALKING ABOUT?

531
00:17:54,720 --> 00:17:54,880
TIM?

532
00:17:54,880 --> 00:17:56,240
>>NO, THAT WAS A MOTION
TO

533
00:17:56,240 --> 00:17:57,360
APPROVE WITHOUT QUESTIONS.

534
00:17:57,360 --> 00:17:59,440
>>OKAY.

535
00:17:59,440 --> 00:18:01,080
ANY -- ANY QUESTIONS ABOUT THIS

536
00:18:01,080 --> 00:18:01,520
CO-FUNDING PROCESS?

537
00:18:01,520 --> 00:18:03,560
WE DON'T DO IT ALL THAT OFTEN,

538
00:18:03,560 --> 00:18:05,440
BUT IT'S USEFUL TO BE ABLE TO DO

539
00:18:05,440 --> 00:18:06,760
IT QUICKLY WHEN WE NEED TO.

540
00:18:06,760 --> 00:18:07,160
OKAY.

541
00:18:07,160 --> 00:18:08,720
SO I'LL TAKE THAT MOTION, WHICH

542
00:18:08,720 --> 00:18:09,800
I PRESUME IS TO APPROVE.

543
00:18:09,800 --> 00:18:12,600
DO WE HAVE A SECOND FOR THAT?

544
00:18:12,600 --> 00:18:14,400
AND THEN YOU CAN VOTE IN THE

545
00:18:14,400 --> 00:18:15,280
CHAT.

546
00:18:15,280 --> 00:18:18,360
SO THAT'S THE END OF OUR COUNCIL

547
00:18:18,360 --> 00:18:19,000
DELEGATED AUTHORITIES.

548
00:18:19,000 --> 00:18:21,200
JUST WANT TO MAKE SURE I DIDN'T

549
00:18:21,200 --> 00:18:21,640
SKIP ANYTHING.

550
00:18:21,640 --> 00:18:22,720
I THINK THAT'S EVERYTHING.

551
00:18:22,720 --> 00:18:25,040
OKAY.

552
00:18:25,040 --> 00:18:27,200
SO NOW WE HAVE WALTER'S TALK,

553
00:18:27,200 --> 00:18:29,080
WHICH I UNDERSTAND IS

554
00:18:29,080 --> 00:18:30,240
PRERECORDED, RIGHT, WALTER?

555
00:18:30,240 --> 00:18:31,560
>>RIGHT.

556
00:18:31,560 --> 00:18:32,960
WE'RE COMING FROM THE NEW

557
00:18:32,960 --> 00:18:35,440
COMMAND CENTER HERE.

558
00:18:35,440 --> 00:18:37,480
WE HAVE NEWLY RENOVATE SPACE AND

559
00:18:37,480 --> 00:18:38,480
HOPEFULLY WE GOT YOU GUYS DOWN

560
00:18:38,480 --> 00:18:38,800
HERE.

561
00:18:38,800 --> 00:18:41,640
IT'S REALLY BEAUTIFUL NOW.

562
00:18:41,640 --> 00:18:45,040
AND PEOPLE COMING IN IN DRIBS

563
00:18:45,040 --> 00:18:47,360
AND DRABS BUT GOOD TO SEE PEOPLE

564
00:18:47,360 --> 00:18:48,560
BACK AGAIN AFTER THOSE COUPLE

565
00:18:48,560 --> 00:18:53,360
YEARS OF COVID.

566
00:18:53,360 --> 00:18:56,080
AND SO THE DIRECTOR'S MESSAGE

567
00:18:56,080 --> 00:18:59,240
HELPS ME PRACTICE AND MAKE SURE

568
00:18:59,240 --> 00:19:01,680
IT'S SUCCINCT, RATHER THAN

569
00:19:01,680 --> 00:19:02,960
AD-LIBBING IT, SO WHY DON'T WE

570
00:19:02,960 --> 00:19:13,160
SHOW THAT.

571
00:19:18,440 --> 00:19:19,560
WELL, MAYBE WE WON'T.

572
00:19:19,560 --> 00:19:29,680
HOLD ON.

573
00:19:33,480 --> 00:19:35,560
>>I WANT TO FIRST START
OFF BY

574
00:19:35,560 --> 00:19:36,680
ACKNOWLEDGING THE PASSING OF

575
00:19:36,680 --> 00:19:39,720
RALPH SACCO.

576
00:19:39,720 --> 00:19:40,080
RALPH WAS --

577
00:19:40,080 --> 00:19:41,560
>>I THINK WE NEED TO TURN
THE

578
00:19:41,560 --> 00:19:51,800
SOUND WAY UP.

579
00:19:54,880 --> 00:19:57,360
 -- THE INSTITUTE WORK ON HEALTH

580
00:19:57,360 --> 00:19:59,080
DISPARITIES FOR MUCH OF HIS

581
00:19:59,080 --> 00:20:01,040
CAREER IN THE AREA OF STROKE.

582
00:20:01,040 --> 00:20:06,040
HE WAS THE FIRST -- HELLO.

583
00:20:06,040 --> 00:20:07,600
I'M WALTER KOROSHETZ, DIRECTOR

584
00:20:07,600 --> 00:20:09,120
OF NINDS, AND I'M HAPPY TO GIVE

585
00:20:09,120 --> 00:20:10,240
THIS DIRECTOR'S REPORT AND

586
00:20:10,240 --> 00:20:14,400
WANTED TO THANK LINDY WOOD AND

587
00:20:14,400 --> 00:20:15,400
AMY ADAMS FOR HELP WITH THIS

588
00:20:15,400 --> 00:20:16,280
REPORT.

589
00:20:16,280 --> 00:20:19,120
I WANT TO FIRST START OFF BY

590
00:20:19,120 --> 00:20:20,120
ACKNOWLEDGING THE PASSING OF

591
00:20:20,120 --> 00:20:22,160
RALPH SACCO.

592
00:20:22,160 --> 00:20:25,560
RALPH WAS A COUNCILMEMBER,

593
00:20:25,560 --> 00:20:26,800
TREMENDOUS FRIEND, GRANTEE OF

594
00:20:26,800 --> 00:20:29,920
THE INSTITUTE, WORKED ON HEALTH

595
00:20:29,920 --> 00:20:31,440
DISPARITIES FOR MUCH OF HIS

596
00:20:31,440 --> 00:20:33,000
CAREER IN THE AREA OF STROKE.

597
00:20:33,000 --> 00:20:35,600
HE WAS THE FIRST NEUROLOGIST TO

598
00:20:35,600 --> 00:20:37,240
BE PRESIDENT OF THE AMERICAN

599
00:20:37,240 --> 00:20:38,440
HEART ASSOCIATION, AND HE WAS

600
00:20:38,440 --> 00:20:40,320
ALSO PRESIDENT OF THE ACADEMY OF

601
00:20:40,320 --> 00:20:41,560
NEUROLOGY.

602
00:20:41,560 --> 00:20:44,120
WE WILL REALLY MISS RALPH.

603
00:20:44,120 --> 00:20:46,560
I WANT TO TALK TO A COUPLE OF

604
00:20:46,560 --> 00:20:48,520
LEADERSHIP CHANGES HERE AT NIH.

605
00:20:48,520 --> 00:20:51,120
WE MENTIONED DR. NINA SCHOR IS

606
00:20:51,120 --> 00:20:52,760
NOW THE INTRAMURAL DIRECTOR OF

607
00:20:52,760 --> 00:20:58,680
ALL OF NIH.

608
00:20:58,680 --> 00:21:01,640
DR. RENEE WEGRZYN IS NOW THE

609
00:21:01,640 --> 00:21:07,800
HEAD OF ARPA-A AND JONI RUTTER

610
00:21:07,800 --> 00:21:10,880
IS NOW OFFICIALLY THE DIRECTOR

611
00:21:10,880 --> 00:21:12,800
OF THE NATIONAL CENTER OF

612
00:21:12,800 --> 00:21:14,000
ADVANCING TRANSLATIONAL

613
00:21:14,000 --> 00:21:14,280
SCIENCES.

614
00:21:14,280 --> 00:21:19,280
AS YOU PROBABLY KNOW DR. FAUCI

615
00:21:19,280 --> 00:21:24,840
STEPPED DOWN, DR. AUCHINCLOSS IS

616
00:21:24,840 --> 00:21:25,920
NOW ACTING DIRECTOR.

617
00:21:25,920 --> 00:21:28,560
AT THE FOGARTY INSTITUTE, ROGER

618
00:21:28,560 --> 00:21:29,760
GLASS WHO RAN THE INSTITUTE FOR

619
00:21:29,760 --> 00:21:32,400
MANY DECADES AND WAS REALLY A

620
00:21:32,400 --> 00:21:33,720
WONDERFUL SOURCE OF INFORMATION

621
00:21:33,720 --> 00:21:38,640
ABOUT HOW TO DO RESEARCH

622
00:21:38,640 --> 00:21:40,400
OVERSEAS, WE MADE MULTIPLE TRIPS

623
00:21:40,400 --> 00:21:42,240
WITH HIM TO VARIOUS COUNTRIES TO

624
00:21:42,240 --> 00:21:46,160
BUILD OUR GLOBAL HEALTH PROGRAM.

625
00:21:46,160 --> 00:21:48,120
HE IS -- THAT INSTITUTE IS BEING

626
00:21:48,120 --> 00:21:52,280
NOW RUN BY DR. PETER KILMARX,

627
00:21:52,280 --> 00:21:56,560
THE ACTING DIRECTOR, AND IN THE

628
00:21:56,560 --> 00:22:00,080
AREA OF THE COMMON FUND, THE

629
00:22:00,080 --> 00:22:01,480
DIVISION OF PROGRAM

630
00:22:01,480 --> 00:22:02,240
COORDINATION, PLANNING AND

631
00:22:02,240 --> 00:22:04,560
STRATEGIC INITIATIVES, JIM

632
00:22:04,560 --> 00:22:08,520
ANDERSON HAS LEFT AND NOW ROB

633
00:22:08,520 --> 00:22:09,680
EISINGER RETURNED TO NIH TO BE

634
00:22:09,680 --> 00:22:11,560
THE ACTING DIRECTOR.

635
00:22:11,560 --> 00:22:16,880
THESE PROGRAMS ARE AMAZINGLY

636
00:22:16,880 --> 00:22:17,560
INTERESTING, HIGH IMPACT

637
00:22:17,560 --> 00:22:18,440
PROGRAMS THAT DO RESEARCH THAT

638
00:22:18,440 --> 00:22:21,480
CUTS ACROSS ALL THE INSTITUTES.

639
00:22:21,480 --> 00:22:23,120
NINDS IS INVOLVED IN MANY OF

640
00:22:23,120 --> 00:22:25,560
THEM, AS YOU CAN SEE HERE, THE

641
00:22:25,560 --> 00:22:27,160
ONES IN THE GREEN BOXES ARE ONES

642
00:22:27,160 --> 00:22:29,360
THAT ARE CO-LED BY NINDS.

643
00:22:29,360 --> 00:22:31,000
WE HAVE STAFF ON ALL THESE

644
00:22:31,000 --> 00:22:33,880
PROJECTS THAT ARE LISTED ON THIS

645
00:22:33,880 --> 00:22:34,840
SLIDE.

646
00:22:34,840 --> 00:22:38,160
I WANT TO GO TO TALK ABOUT THE

647
00:22:38,160 --> 00:22:39,120
BUDGET.

648
00:22:39,120 --> 00:22:42,720
SO THE BUDGET WAS SIGNED BY THE

649
00:22:42,720 --> 00:22:45,200
PRESIDENT, AND SO WE KNOW OUR FY

650
00:22:45,200 --> 00:22:47,080
23 NUMBERS.

651
00:22:47,080 --> 00:22:49,280
THE NINDS BASE, WHICH IS THE

652
00:22:49,280 --> 00:22:51,360
FUNDING THAT COMES TO NIH FOR

653
00:22:51,360 --> 00:22:53,880
ALL OUR BASE ACTIVITY, EXCLUDES

654
00:22:53,880 --> 00:22:55,320
THINGS LIKE THE BRAIN

655
00:22:55,320 --> 00:22:57,920
INITIATIVE, THE HEAL INITIATIVE,

656
00:22:57,920 --> 00:23:01,720
MUCH OF THE MANAGEMENT OF

657
00:23:01,720 --> 00:23:02,400
ALZHEIMER'S-RELATED DEMENTIA

658
00:23:02,400 --> 00:23:03,800
RESEARCH WHERE THE FUNDS COME

659
00:23:03,800 --> 00:23:05,800
FROM THE AGING INSTITUTE AND NOT

660
00:23:05,800 --> 00:23:08,200
INCLUDED IN THE BASE.

661
00:23:08,200 --> 00:23:11,360
OUR BASE IS INCREASED TO

662
00:23:11,360 --> 00:23:13,120
2.167 BILLION, A 4% INCREASE.

663
00:23:13,120 --> 00:23:14,400
TOTAL NINDS APPROPRIATION,

664
00:23:14,400 --> 00:23:17,200
HOWEVER, WHEN YOU ADD IN THOSE

665
00:23:17,200 --> 00:23:20,440
OTHER FIGURES THAT I MENTIONED

666
00:23:20,440 --> 00:23:23,200
BRINGS OUR APPROPRIATION BUDGET

667
00:23:23,200 --> 00:23:25,360
TO $2.8 BILLION, AND THAT'S A

668
00:23:25,360 --> 00:23:28,880
TOTAL CHANGE OF 7.8%.

669
00:23:28,880 --> 00:23:33,680
AS AN INCREASE.

670
00:23:33,680 --> 00:23:35,440
IF ONE LOOKS FURTHER AT THE

671
00:23:35,440 --> 00:23:37,720
BUDGET, HERE IS THE BASE AGAIN,

672
00:23:37,720 --> 00:23:38,320
4% INCREASE.

673
00:23:38,320 --> 00:23:40,040
THE BRAIN INITIATIVE MONEY IS

674
00:23:40,040 --> 00:23:41,120
DIVIDED INTO TWO BUCKETS.

675
00:23:41,120 --> 00:23:42,560
ONE IS THE BASE BUDGET AND THE

676
00:23:42,560 --> 00:23:44,680
OTHER IS THE CURES.

677
00:23:44,680 --> 00:23:46,600
OVERALL WE SAW AN 11% INCREASE,

678
00:23:46,600 --> 00:23:48,600
BUT THAT WAS REFLECTED BY A BIG

679
00:23:48,600 --> 00:23:50,880
INCREASE IN THE CURES ACT

680
00:23:50,880 --> 00:23:53,080
FUNDING, WHICH IS TIME-LIMITED

681
00:23:53,080 --> 00:23:55,040
MONEY, AND A BIG DROP IN THE

682
00:23:55,040 --> 00:23:56,440
BASE BUDGET WHICH IS GENERALLY

683
00:23:56,440 --> 00:23:57,440
SOMETHING THAT DOESN'T CHANGE

684
00:23:57,440 --> 00:23:59,080
BUT IT DID THIS TIME

685
00:23:59,080 --> 00:24:00,280
UNFORTUNATELY.

686
00:24:00,280 --> 00:24:03,120
THE HEAL INITIATIVE BUDGET HAD A

687
00:24:03,120 --> 00:24:03,680
3.7% INCREASE.

688
00:24:03,680 --> 00:24:05,840
REMEMBER THIS IS HELPING TO END

689
00:24:05,840 --> 00:24:07,720
ADDICTION LONG TERM, AND HERE AT

690
00:24:07,720 --> 00:24:11,960
NINDS, WE SEE THE FUNDS AND IT

691
00:24:11,960 --> 00:24:14,080
GOES ON TO PROJECTS THAT ARE

692
00:24:14,080 --> 00:24:15,160
BEGUN BY MANY INSTITUTES TO

693
00:24:15,160 --> 00:24:16,360
DEVELOP NON-ADDICTIVE AND MUCH

694
00:24:16,360 --> 00:24:18,560
MORE EFFECTIVE TREATMENTS FOR

695
00:24:18,560 --> 00:24:18,920
PAIN.

696
00:24:18,920 --> 00:24:20,200
IN THE ALZHEIMER'S AND

697
00:24:20,200 --> 00:24:22,080
ALZHEIMER'S DISEASE-RELATED

698
00:24:22,080 --> 00:24:23,920
DEMENTIA AREA, FOR THE FIRST

699
00:24:23,920 --> 00:24:25,200
TIME NINDS RECEIVED AN

700
00:24:25,200 --> 00:24:27,960
APPROPRIATION OF $75 MILLION.

701
00:24:27,960 --> 00:24:30,040
THIS IS FACTORED INTO THE FACT

702
00:24:30,040 --> 00:24:33,840
THAT NINDS ADMINISTERS ABOUT 10%

703
00:24:33,840 --> 00:24:35,280
OF THIS INITIATIVE FROM FUNDS

704
00:24:35,280 --> 00:24:36,440
THAT ARE IN THE NATIONAL

705
00:24:36,440 --> 00:24:38,120
INSTITUTE OF AGING, AND THE

706
00:24:38,120 --> 00:24:40,480
TOTAL BUDGET FOR OUR PART OF THE

707
00:24:40,480 --> 00:24:44,760
PROJECT IS $307.7 MILLION, NOW

708
00:24:44,760 --> 00:24:47,640
$75 MILLION OF THAT WILL BE FROM

709
00:24:47,640 --> 00:24:50,280
OUR APPROPRIATION.

710
00:24:50,280 --> 00:24:52,680
NINDS IS ALSO THE LEAD IN THE

711
00:24:52,680 --> 00:24:56,040
UNDIAGNOSED DISEASE NETWORK

712
00:24:56,040 --> 00:24:57,480
CONTINUATION.

713
00:24:57,480 --> 00:24:59,920
WE RECEIVED $2 MILLION TO OUR

714
00:24:59,920 --> 00:25:03,840
BASE BUDGET FOR THAT PURPOSE.

715
00:25:03,840 --> 00:25:06,240
THIS IS KIND OF A SUMMARY THEN

716
00:25:06,240 --> 00:25:08,080
OF THE FUNDS THAT WE ARE

717
00:25:08,080 --> 00:25:11,160
MANAGING, AND THE POINT TO MAKE

718
00:25:11,160 --> 00:25:12,920
IS THAT THE FUNDS THAT WE'RE

719
00:25:12,920 --> 00:25:14,560
MANAGING HAVE OVER DOUBLED

720
00:25:14,560 --> 00:25:15,680
SINCE -- PRETTY MUCH DOUBLED

721
00:25:15,680 --> 00:25:17,960
SINCE I BECAME DIRECTOR, AND

722
00:25:17,960 --> 00:25:20,480
HATS OFF TO OUR PEOPLE WHO ARE

723
00:25:20,480 --> 00:25:25,520
WORKING FURIOUSLY TO BE GOOD

724
00:25:25,520 --> 00:25:28,120
STEWARDS OF THESE TACK PAIR

725
00:25:28,120 --> 00:25:28,600
FUNDS.

726
00:25:28,600 --> 00:25:30,200
CERTAINLY OUR PERSONNEL HAVE NOT

727
00:25:30,200 --> 00:25:33,720
DOUBLED IN THAT TIME.

728
00:25:33,720 --> 00:25:34,840
I WANT TO TALK A LITTLE BIT

729
00:25:34,840 --> 00:25:36,640
ABOUT A PROBLEM THAT OCCURRED AT

730
00:25:36,640 --> 00:25:39,040
THE NEUROSCIENCE RESEARCH

731
00:25:39,040 --> 00:25:39,920
CENTER.

732
00:25:39,920 --> 00:25:42,360
THOSE WHO MAY KNOW, IT'S A

733
00:25:42,360 --> 00:25:45,640
FANTASTIC INSTITUTE HERE ON THE

734
00:25:45,640 --> 00:25:49,120
NIH CAMPUS, HOME FOR

735
00:25:49,120 --> 00:25:49,800
85 LABORATORIES, 800 SCIENTISTS

736
00:25:49,800 --> 00:25:52,400
ALL IN THESE BUILDINGS THAT

737
00:25:52,400 --> 00:25:54,800
FOSTER COLLABORATION, BUT JUST

738
00:25:54,800 --> 00:25:57,880
BEFORE CHRISTMAS, WE HAD TWO

739
00:25:57,880 --> 00:26:00,280
CATASTROPHIC FLOODS.

740
00:26:00,280 --> 00:26:02,400
SOME OF THE HORRIBLE PICTURES.

741
00:26:02,400 --> 00:26:04,240
THE WATER CAME POURING DOWN FROM

742
00:26:04,240 --> 00:26:05,600
THE -- FROM REALLY THE ROOF OF

743
00:26:05,600 --> 00:26:07,200
THE BUILDING AND THE TOP AREAS

744
00:26:07,200 --> 00:26:09,720
OF THE BUILDING AND FLOODED ALL

745
00:26:09,720 --> 00:26:13,440
THE LABORATORIES BELOW, CAUSING

746
00:26:13,440 --> 00:26:15,280
REALLY CATASTROPHIC DAMAGE TO

747
00:26:15,280 --> 00:26:19,120
SUPPLIES, EQUIPMENT.

748
00:26:19,120 --> 00:26:21,080
THE LABS THAT ARE BADLY AFFECTED

749
00:26:21,080 --> 00:26:21,760
ARE STILL NOT OPEN.

750
00:26:21,760 --> 00:26:25,720
A LOT OF WORK GS ON IN T GOING S

751
00:26:25,720 --> 00:26:28,000
OF REMEDIATION OF THE FLOOD

752
00:26:28,000 --> 00:26:29,760
DAMAGE, AND THEN DEVELOPING A

753
00:26:29,760 --> 00:26:31,160
SENSE OF THE EQUIPMENT AND

754
00:26:31,160 --> 00:26:33,920
SUPPLY DAMAGES THAT NINDS WILL

755
00:26:33,920 --> 00:26:36,320
HAVE TO REIMBURSE.

756
00:26:36,320 --> 00:26:39,400
18 OF THE LABS THAT WERE DAMAGED

757
00:26:39,400 --> 00:26:42,760
WERE NINDS LABS.

758
00:26:42,760 --> 00:26:45,120
I WANT TO NOW TURN TO

759
00:26:45,120 --> 00:26:46,240
AMYOTROPHIC LATERAL SCLEROSIS OR

760
00:26:46,240 --> 00:26:46,680
A.L.S.

761
00:26:46,680 --> 00:26:49,760
WE'RE GOING TO BE HEARING A LOT

762
00:26:49,760 --> 00:26:50,880
ABOUT A.L.S. LATER IN THE OPEN

763
00:26:50,880 --> 00:26:51,200
SESSION.

764
00:26:51,200 --> 00:26:54,480
I JUST WANT TO BRING TO YOUR

765
00:26:54,480 --> 00:26:57,000
ATTENTION THAT CONGRESS PASSED

766
00:26:57,000 --> 00:26:58,320
AND THE PRESIDENT SIGNED THE

767
00:26:58,320 --> 00:27:01,160
ACCELERATING ACCESS TO CRITICAL

768
00:27:01,160 --> 00:27:03,640
THERAPIES A.L.S. ACT.

769
00:27:03,640 --> 00:27:05,520
THAT ACT INCLUDES A COUPLE OF

770
00:27:05,520 --> 00:27:06,400
COMPONENTS WHICH WE'LL TALK

771
00:27:06,400 --> 00:27:07,600
ABOUT BRIEFLY HERE AND WE'LL

772
00:27:07,600 --> 00:27:09,680
TALK ABOUT MORE EXTENSIVELY THIS

773
00:27:09,680 --> 00:27:11,960
AFTERNOON.

774
00:27:11,960 --> 00:27:14,040
THE FIRST IS THAT IT WAS MADE

775
00:27:14,040 --> 00:27:16,680
VERY CLEAR THAT THE TOP PRIORITY

776
00:27:16,680 --> 00:27:19,280
FOR THE FUNDS THAT CAME WITH

777
00:27:19,280 --> 00:27:22,360
THIS BILL, NOW $75 MILLION IN

778
00:27:22,360 --> 00:27:24,480
'23, ARE TO BE USED FOR EXPANDED

779
00:27:24,480 --> 00:27:26,200
ACCESS RESEARCH.

780
00:27:26,200 --> 00:27:28,720
SO THAT'S TO FUND GRANTS FOR

781
00:27:28,720 --> 00:27:30,240
RESEARCH IN PERSONS WHO ARE

782
00:27:30,240 --> 00:27:32,960
TREATED WITH INVESTIGATIONAL

783
00:27:32,960 --> 00:27:34,720
INTERVENTIONS, WHO ARE NOT

784
00:27:34,720 --> 00:27:37,160
ELIGIBLE FOR ONGOING PHASE

785
00:27:37,160 --> 00:27:40,520
3 TRIALS, AND THESE AGENTS HAVE

786
00:27:40,520 --> 00:27:45,680
TO COME FROM INDUSTRIES THAT

787
00:27:45,680 --> 00:27:47,200
QUALIFY SMALL BUSINESS GRANTS.

788
00:27:47,200 --> 00:27:50,440
IN FY '23, WE HAD $25 MILLION

789
00:27:50,440 --> 00:27:51,800
THAT CAME TO NIH FOR THIS

790
00:27:51,800 --> 00:27:52,320
PURPOSE.

791
00:27:52,320 --> 00:27:56,400
WE SPENT $18 MILLION ON A

792
00:27:56,400 --> 00:27:57,360
EXPANDED ACCESS RESEARCH GRANT,

793
00:27:57,360 --> 00:27:59,320
AND THESE INCLUDE THE COSTS OF

794
00:27:59,320 --> 00:28:01,280
MANUFACTURE AND DISTRIBUTION, IN

795
00:28:01,280 --> 00:28:02,400
ADDITION TO THE USUAL COSTS THAT

796
00:28:02,400 --> 00:28:06,000
WE SEE IN RESEARCH GRANTS.

797
00:28:06,000 --> 00:28:09,080
THOUGH THE LIST OF ELIGIBLE

798
00:28:09,080 --> 00:28:10,040
INTERVENTIONS, THEY HAVE TO BE

799
00:28:10,040 --> 00:28:11,280
INTERVENTION FROM A SMALL

800
00:28:11,280 --> 00:28:12,160
BUSINESS GRANT ORGANIZATION, AND

801
00:28:12,160 --> 00:28:15,000
THEY HAVE TO BE IN PHASE

802
00:28:15,000 --> 00:28:16,200
3 TRIAL, THE LIST IS LIMITED BUT

803
00:28:16,200 --> 00:28:17,960
WE HOPE TO HAVE A ROBUST

804
00:28:17,960 --> 00:28:19,000
RESPONSE TO THE FUNDING

805
00:28:19,000 --> 00:28:20,000
ANNOUNCEMENT GIVEN THE LONGER

806
00:28:20,000 --> 00:28:22,640
LEAD TIME AND THE OUTREACH FROM

807
00:28:22,640 --> 00:28:24,040
NINDS AND THE A.L.S. COMMUNITY.

808
00:28:24,040 --> 00:28:26,600
SO I'M ASKING ALL THOSE WHO ARE

809
00:28:26,600 --> 00:28:28,680
INVOLVED IN A.L.S. TO MESSAGE

810
00:28:28,680 --> 00:28:31,200
OUT THIS AMAZING RESEARCH

811
00:28:31,200 --> 00:28:33,480
OPPORTUNITY, WHICH ALSO ALLOWS

812
00:28:33,480 --> 00:28:37,320
MANY MORE PEOPLE WHO HAVE A.L.S.

813
00:28:37,320 --> 00:28:38,760
TO RECEIVE INVESTIGATIONAL DRUGS

814
00:28:38,760 --> 00:28:40,400
SHOULD THEY WISH TO DO SO.

815
00:28:40,400 --> 00:28:42,160
THE FUNDING OPPORTUNITY WAS

816
00:28:42,160 --> 00:28:43,960
RELEASED IN JANUARY, AS SOON AS

817
00:28:43,960 --> 00:28:46,280
WE COULD GET IT OUT AFTER THE

818
00:28:46,280 --> 00:28:47,840
BILL WAS -- AFTER THE BUDGET

819
00:28:47,840 --> 00:28:48,360
CAME THROUGH.

820
00:28:48,360 --> 00:28:50,640
WE HAVE TWO TECHNICAL WEBINARS

821
00:28:50,640 --> 00:28:51,320
SCHEDULED.

822
00:28:51,320 --> 00:28:52,600
I'LL SHOW YOU THAT ON THE NEXT

823
00:28:52,600 --> 00:28:55,160
SLIDE.

824
00:28:55,160 --> 00:28:57,800
NOW, THERE ARE $75 MILLION IN

825
00:28:57,800 --> 00:28:58,120
THIS YEAR.

826
00:28:58,120 --> 00:29:00,960
IF FUNDS ARE STILL AVAILABLE,

827
00:29:00,960 --> 00:29:02,680
CONGRESS INSTRUCTED US TO USE

828
00:29:02,680 --> 00:29:05,200
THEM FOR MERITORIOUS EXPANDED

829
00:29:05,200 --> 00:29:08,840
ACCESS APPLICATIONS, BUT ALSO TO

830
00:29:08,840 --> 00:29:11,120
EXPAND THE PUBLIC-PRIVATE

831
00:29:11,120 --> 00:29:13,200
PARTNERSHIP FOR RARE

832
00:29:13,200 --> 00:29:13,760
NEURODEGENERATIVE DISEASES

833
00:29:13,760 --> 00:29:14,520
BETWEEN THE NIH AND FDA.

834
00:29:14,520 --> 00:29:18,800
THIS WAS ALSO PART OF THE ACT IN

835
00:29:18,800 --> 00:29:20,360
FY 22, WE TRANSFERRED FUNDS TO

836
00:29:20,360 --> 00:29:22,720
THE FDA FOR A PUBLIC-PRIVATE

837
00:29:22,720 --> 00:29:23,720
PARTNERSHIP RUN THROUGH THE

838
00:29:23,720 --> 00:29:25,120
CRITICAL PATH INSTITUTE, AND

839
00:29:25,120 --> 00:29:28,200
ALSO A NATURAL HISTORY STUDY OF

840
00:29:28,200 --> 00:29:30,840
A.L.S. THAT WAS INSTITUTED BY

841
00:29:30,840 --> 00:29:31,840
THE FDA.

842
00:29:31,840 --> 00:29:33,440
IN '23, THE NINDS WILL PREPARE

843
00:29:33,440 --> 00:29:36,880
FOR A POTENTIAL TO EXPAND THE

844
00:29:36,880 --> 00:29:37,680
PUBLIC-PRIVATE PARTNERSHIP WITH

845
00:29:37,680 --> 00:29:39,080
THE FDA AND C-PATH BY WORKING

846
00:29:39,080 --> 00:29:40,280
WITH OUR PARTNERS AT THE

847
00:29:40,280 --> 00:29:45,120
FOUNDATION FOR NIH.

848
00:29:45,120 --> 00:29:46,720
A THIRD PRIORITY, SHOULD FUNDS

849
00:29:46,720 --> 00:29:48,360
STILL BE AVAILABLE AFTER THE

850
00:29:48,360 --> 00:29:49,560
PUBLIC-PRIVATE PARTNERSHIP AND

851
00:29:49,560 --> 00:29:51,120
EXPANDED ACCESS IS FUNDED ARE

852
00:29:51,120 --> 00:29:53,080
FUNDS FOR MERITORIOUS A.L.S.

853
00:29:53,080 --> 00:30:00,440
RESEARCH.

854
00:30:00,440 --> 00:30:02,200
THESE ARE THE LINKS TO THE FOA

855
00:30:02,200 --> 00:30:03,640
AND ALSO LINKS TO THE WEBINARS

856
00:30:03,640 --> 00:30:06,800
THAT WILL BE OCCURRING IN MID

857
00:30:06,800 --> 00:30:08,000
AND LATE FEBRUARY TO GIVE

858
00:30:08,000 --> 00:30:09,200
TECHNICAL ASSISTANCE WITH THOSE

859
00:30:09,200 --> 00:30:10,280
WHO ARE INTERESTED IN APPLYING

860
00:30:10,280 --> 00:30:13,360
FOR THE EXPANDED ACCESS RESEARCH

861
00:30:13,360 --> 00:30:13,600
PROGRAM.

862
00:30:13,600 --> 00:30:16,520
THANK YOU.

863
00:30:16,520 --> 00:30:18,320
I JUST DID WANT TO MENTION THAT

864
00:30:18,320 --> 00:30:19,920
A.L.S. RESEARCH HAS EXPANDED

865
00:30:19,920 --> 00:30:21,800
DRAMATICALLY IN THE LAST FIVE TO

866
00:30:21,800 --> 00:30:23,760
SIX YEARS.

867
00:30:23,760 --> 00:30:25,120
THIS IS IN TERMS OF THE FUNDING

868
00:30:25,120 --> 00:30:27,720
BUT ALSO THE LEVEL AND QUALITY

869
00:30:27,720 --> 00:30:28,480
OF THE SCIENCE.

870
00:30:28,480 --> 00:30:31,200
MUCH OF THESE FUNDS ARE FUNDS

871
00:30:31,200 --> 00:30:35,160
THAT NINDS MANAGES THAT HAVE

872
00:30:35,160 --> 00:30:39,000
COME FROM THE ADRD FUNDING THAT

873
00:30:39,000 --> 00:30:40,040
WENT TO THE NATIONAL INSTITUTE

874
00:30:40,040 --> 00:30:41,440
OF AGING AND WE MANAGE MOST OF

875
00:30:41,440 --> 00:30:46,480
THE FUNDS RELATED TO

876
00:30:46,480 --> 00:30:47,200
FRONTOTEMPORO DEMENTIA WHICH HAS

877
00:30:47,200 --> 00:30:49,080
A SIGNIFICANT OVERLAP WITH

878
00:30:49,080 --> 00:30:49,440
A.L.S.

879
00:30:49,440 --> 00:30:51,000
YOU'LL HEAR ABOUT THE STRATEGIC

880
00:30:51,000 --> 00:30:52,200
PLANNING THIS AFTERNOON, AND

881
00:30:52,200 --> 00:30:54,760
YOU'LL HEAR FROM THE MEMBERS OF

882
00:30:54,760 --> 00:30:56,160
THE STRATEGIC PLANNING GROUP,

883
00:30:56,160 --> 00:31:02,960
RITA SATTLER, ROB BROWN, LAYNE

884
00:31:02,960 --> 00:31:13,440
OLIFF, ELLEN PHILLIPS AND DAN

885
00:31:19,960 --> 00:31:22,880
ALSO BEEN ASKED TO CARRY OUT A

886
00:31:22,880 --> 00:31:26,080
STUDY OF PUBLIC AND PRIVATE

887
00:31:26,080 --> 00:31:27,360
NON-PROFIT PARTNERSHIP HOW TO

888
00:31:27,360 --> 00:31:30,160
MAKE ALZHEIMER'S A MORE LIVABLE

889
00:31:30,160 --> 00:31:32,400
DISEASE WITHIN A DECADE, BUILD

890
00:31:32,400 --> 00:31:34,080
UPON THE RESEARCH PRIORITIES IN

891
00:31:34,080 --> 00:31:36,040
THE NIH A.L.S. STRATEGIC

892
00:31:36,040 --> 00:31:39,200
PRIORITIES WITH A HEAVY EMPHASIS

893
00:31:39,200 --> 00:31:41,600
ON CARE AND SERVICES.

894
00:31:41,600 --> 00:31:44,920
IN THE SAME LINE AS

895
00:31:44,920 --> 00:31:45,680
NEURODEGENERATIVE DISEASE

896
00:31:45,680 --> 00:31:48,280
RESEARCH, WE OPENED THE ROY

897
00:31:48,280 --> 00:31:50,080
BLUNT CENTER FOR ALZHEIMER'S

898
00:31:50,080 --> 00:31:52,080
DISEASE AND RELATED DEMENTIAS

899
00:31:52,080 --> 00:31:53,680
RESEARCH ON TH THE CAMPUS OF THE

900
00:31:53,680 --> 00:31:54,080
NIH.

901
00:31:54,080 --> 00:31:57,720
YOU CAN SEE ANDY SIN DELTON FROM

902
00:31:57,720 --> 00:32:00,360
THE AGING INSTITUTE DIRECTOR,

903
00:32:00,360 --> 00:32:08,200
SENATOR BLUNT, HIS WIFE,

904
00:32:08,200 --> 00:32:10,240
DR. HODES AND I, CUTTING

905
00:32:10,240 --> 00:32:11,200
RESEARCH ON THE NIH CAMPUS TO

906
00:32:11,200 --> 00:32:12,880
DEVELOP BETTER YOU UNDERSTAND

907
00:32:12,880 --> 00:32:14,440
STANDING OF THERAPIES FOR

908
00:32:14,440 --> 00:32:16,400
ALZHEIMER'S AND THE ALZHEIMER'S

909
00:32:16,400 --> 00:32:17,640
RELATED DEMENTIAS, WHICH THE

910
00:32:17,640 --> 00:32:21,560
LATTER ARE DEFINED AS THE

911
00:32:21,560 --> 00:32:24,080
VASCULAR CONTRIBUTION DEMENTIA,

912
00:32:24,080 --> 00:32:25,120
FRONTOTEMPORO DEMENTIA AND LEWY

913
00:32:25,120 --> 00:32:27,040
BODY DISEASE.

914
00:32:27,040 --> 00:32:31,320
I WANTED TO BRING UP THE FACT

915
00:32:31,320 --> 00:32:32,720
THAT NIH HAS BEEN LOOKING TO

916
00:32:32,720 --> 00:32:35,360
MAKE SOME CHANGES IN ITS

917
00:32:35,360 --> 00:32:39,400
RESEARCH PROJECT GRANT REVIEW

918
00:32:39,400 --> 00:32:39,800
PROCESS.

919
00:32:39,800 --> 00:32:43,120
THE IDEA IS HERE TO IDENTIFY THE

920
00:32:43,120 --> 00:32:44,200
STRONGEST PRO TENSIONALLY

921
00:32:44,200 --> 00:32:45,080
HIGHEST IMPACT RESEARCH BY

922
00:32:45,080 --> 00:32:47,520
REDUCING THE BIAS IN REVIEW.

923
00:32:47,520 --> 00:32:48,840
THERE'S SOMETHING CALLED THE

924
00:32:48,840 --> 00:32:49,640
MATHEWS EFFECT, WHICH IS PEOPLE

925
00:32:49,640 --> 00:32:51,240
WHO ARE REALLY FAMOUS AND PEOPLE

926
00:32:51,240 --> 00:32:53,680
COME FROM FAMOUS INSTITUTIONS

927
00:32:53,680 --> 00:32:59,360
TEND TO GET A BUMP IN THERREL --

928
00:32:59,360 --> 00:33:00,800
IN HOW THEIR PROJECTS ARE

929
00:33:00,800 --> 00:33:01,560
ASSESSED, AND THIS IS REALLY NOT

930
00:33:01,560 --> 00:33:03,320
FAIR TO SOMEBODY WITH THE SAME

931
00:33:03,320 --> 00:33:05,520
PROJECT, THE SAME EXPERTISE AND

932
00:33:05,520 --> 00:33:06,720
THE SAME ABILITY AT ANOTHER

933
00:33:06,720 --> 00:33:07,920
PLACE.

934
00:33:07,920 --> 00:33:13,320
SO THE IDEA IS TO TRY TO

935
00:33:13,320 --> 00:33:14,480
MINIMIZE THE INFLUENCE OF THE

936
00:33:14,480 --> 00:33:15,400
APPLICANT'S RESUME AND

937
00:33:15,400 --> 00:33:18,120
WORKPLACE.

938
00:33:18,120 --> 00:33:20,200
SO WHAT THEY PROPOSE T TO DO ISO

939
00:33:20,200 --> 00:33:24,440
HAVE BASICALLY THREE FACTORS NOW

940
00:33:24,440 --> 00:33:28,720
TO ASK REVIEWERS TO SCORE.

941
00:33:28,720 --> 00:33:29,840
THE FIRST TWO, AND THEN TO

942
00:33:29,840 --> 00:33:31,480
INCORPORATE THE THIRD AS WELL AS

943
00:33:31,480 --> 00:33:32,800
THE FIRST TWO INTO THE OVERALL

944
00:33:32,800 --> 00:33:33,880
SCORE.

945
00:33:33,880 --> 00:33:35,120
THE FIRST IS THE IMPORTANCE OF

946
00:33:35,120 --> 00:33:36,680
RESEARCH, THE SECOND IS THE

947
00:33:36,680 --> 00:33:37,640
FEASIBILITY AND THE RIGOR OF

948
00:33:37,640 --> 00:33:39,040
THAT RESEARCH, AND THE THIRD ONE

949
00:33:39,040 --> 00:33:42,040
IS THE EXPERTISE AND RESOURCES.

950
00:33:42,040 --> 00:33:43,280
WE'RE REALLY TRYING TO SEPARATE

951
00:33:43,280 --> 00:33:45,760
WHAT IS THE REAL EXPERTISE FROM

952
00:33:45,760 --> 00:33:47,760
JUST THE REPUTATION THAT MAY NOT

953
00:33:47,760 --> 00:33:51,360
ACTUALLY BEAR ON THE EXPERTISE

954
00:33:51,360 --> 00:33:54,440
OR THE ENVIRONMENT ON THE

955
00:33:54,440 --> 00:33:56,040
RESOURCES.

956
00:33:56,040 --> 00:33:58,720
THERE WILL BE A REQUEST FOR

957
00:33:58,720 --> 00:34:00,440
INFORMATION COMING ON -- I'M

958
00:34:00,440 --> 00:34:02,520
SORRY, THERE IS A REQUEST FOR

959
00:34:02,520 --> 00:34:03,080
INFORMATION OUT.

960
00:34:03,080 --> 00:34:06,480
COMMENTS ARE ACCEPTED THROUGH

961
00:34:06,480 --> 00:34:09,680
MARCH 10TH AT THIS WEBSITE.

962
00:34:09,680 --> 00:34:11,880
TURNING NOW TO THE NIH DATA

963
00:34:11,880 --> 00:34:12,960
MANAGEMENT SHARING POLICY, WHICH

964
00:34:12,960 --> 00:34:17,760
WE'VE TALKED ABOUT MULTIPLE

965
00:34:17,760 --> 00:34:18,880
TIMES, MULTIPLE COUNCILS, BUT

966
00:34:18,880 --> 00:34:20,520
THE MAIN POINT IS APPLICATIONS

967
00:34:20,520 --> 00:34:23,080
RECEIVED AFTER JANUARY 25TH,

968
00:34:23,080 --> 00:34:24,160
2023 MUST INCLUDE A PLAN FOR

969
00:34:24,160 --> 00:34:26,600
SHARING BOTH PUBLISHED AND

970
00:34:26,600 --> 00:34:28,000
NON-PUBLISHED SCIENTIFIC DATA.

971
00:34:28,000 --> 00:34:30,200
SO THIS IS NOW IN EFFECT.

972
00:34:30,200 --> 00:34:31,720
THERE IS A GREAT DEAL OF

973
00:34:31,720 --> 00:34:34,000
GUIDANCE AVAILABLE FOR PEOPLE TO

974
00:34:34,000 --> 00:34:36,120
UNDERSTAND HOW THEY CAN COMPLY

975
00:34:36,120 --> 00:34:39,400
WITH THIS MANDATE FROM NIH.

976
00:34:39,400 --> 00:34:42,800
MANY PLACES TO POST THE DATA.

977
00:34:42,800 --> 00:34:44,440
WE WELCOME YOUR FEEDBACK ON AN

978
00:34:44,440 --> 00:34:46,320
ONGOING BASIS BUT I'VE BEEN

979
00:34:46,320 --> 00:34:48,960
URGING THE COMMUNITY TO PIVOT TO

980
00:34:48,960 --> 00:34:50,600
THINKING NOT JUST HOW TO POST

981
00:34:50,600 --> 00:34:52,480
THE DATA BUT REALLY HOW DO WE

982
00:34:52,480 --> 00:34:53,760
MAKE BEST USE OF THIS POSTED

983
00:34:53,760 --> 00:34:54,880
DATA SO THAT'S GOING TO ADVANCE

984
00:34:54,880 --> 00:34:55,760
YOUR FIELD OF SCIENCE.

985
00:34:55,760 --> 00:34:57,040
AND I THINK THAT'S GOING TO TAKE

986
00:34:57,040 --> 00:34:59,920
WORK, BUT I THINK THAT'S WHERE

987
00:34:59,920 --> 00:35:03,200
THE BENEFIT IS GOING TO BE.

988
00:35:03,200 --> 00:35:05,040
IN A SIMILAR VEIN, I WANTED TO

989
00:35:05,040 --> 00:35:06,840
BRING UP THE NEW POLICY COMING

990
00:35:06,840 --> 00:35:08,160
OUT OF THE WHITE HOUSE WITH

991
00:35:08,160 --> 00:35:11,080
REGARD TO PUBLIC ACCESS TO

992
00:35:11,080 --> 00:35:12,080
FEDERALLY FUNDED DATA.

993
00:35:12,080 --> 00:35:15,160
SO THE CURRENT POLICY IS THAT

994
00:35:15,160 --> 00:35:18,040
THE DATA THAT IS PUBLISHED,

995
00:35:18,040 --> 00:35:20,200
FUNDED BY NIH HAS TO BE MADE

996
00:35:20,200 --> 00:35:21,640
PUBLICLY AVAILABLE NO LATER THAN

997
00:35:21,640 --> 00:35:25,360
12 MONTHS AFTER THE DATE OF

998
00:35:25,360 --> 00:35:26,040
PUBLICATION.

999
00:35:26,040 --> 00:35:26,960
BUT THE NEW GUIDANCE IS FOR THAT

1000
00:35:26,960 --> 00:35:28,120
TO BE MADE IMMEDIATELY

1001
00:35:28,120 --> 00:35:29,800
AVAILABLE.

1002
00:35:29,800 --> 00:35:31,600
SO NIH IS PUTTING IN THEIR

1003
00:35:31,600 --> 00:35:34,720
PLANS, THEY WOULD DO -- I THINK

1004
00:35:34,720 --> 00:35:38,760
THEY WERE DUE ALREADY, AND THESE

1005
00:35:38,760 --> 00:35:40,080
POLICIES WOULD HAVE TO GO INTO

1006
00:35:40,080 --> 00:35:42,080
EFFECT AS OF DECEMBER 31ST,

1007
00:35:42,080 --> 00:35:42,680
2025.

1008
00:35:42,680 --> 00:35:44,040
SO STAY TUNED.

1009
00:35:44,040 --> 00:35:45,880
A DRAFT PLAN AND OPPORTUNITY FOR

1010
00:35:45,880 --> 00:35:47,640
PUBLIC COMMENT ON HOW NIH WILL

1011
00:35:47,640 --> 00:35:50,040
RESPOND TO THE WHITE HOUSE

1012
00:35:50,040 --> 00:35:51,080
MEMORANDUM HERE WILL BE COMING

1013
00:35:51,080 --> 00:35:54,160
OUT.

1014
00:35:54,160 --> 00:35:57,400
WE'RE GOING TO TALK ABOUT THE

1015
00:35:57,400 --> 00:35:58,400
ADVISORY COMMITTEE TO THE

1016
00:35:58,400 --> 00:35:58,880
DIRECTOR.

1017
00:35:58,880 --> 00:36:00,400
THESE COMMITTEES OF THE

1018
00:36:00,400 --> 00:36:03,200
DIRECTOR'S COUNCIL, AND THEY ARE

1019
00:36:03,200 --> 00:36:05,320
VERY MUCH UTILIZED TO DEVELOP

1020
00:36:05,320 --> 00:36:07,520
POLICIES THAT CUT ACROSS ALL THE

1021
00:36:07,520 --> 00:36:09,480
INSTITUTES.

1022
00:36:09,480 --> 00:36:11,240
ONE HAS SUBMITTED ITS REPORT AND

1023
00:36:11,240 --> 00:36:14,760
THAT'S THE GROUP ON DIVERSITY

1024
00:36:14,760 --> 00:36:15,520
AND INDIVIDUALS WITH

1025
00:36:15,520 --> 00:36:17,680
DISABILITIES.

1026
00:36:17,680 --> 00:36:20,480
THEIR REPORT INDICATES AND TELLS

1027
00:36:20,480 --> 00:36:22,040
US THAT PERSONS WITH

1028
00:36:22,040 --> 00:36:24,120
DISABILITIES ARE THE SINGLE

1029
00:36:24,120 --> 00:36:25,880
LARGEST MINORITY POPULATION AND

1030
00:36:25,880 --> 00:36:27,400
FASTEST GROWING MINORITY

1031
00:36:27,400 --> 00:36:28,600
POPULATION IN THE U.S.

1032
00:36:28,600 --> 00:36:31,240
THEY REPRESENT ABOUT 9% OF THE

1033
00:36:31,240 --> 00:36:34,200
SCIENTIFIC WORKFORCE.

1034
00:36:34,200 --> 00:36:38,440
AND THE ITION INDICATION IS

1035
00:36:38,440 --> 00:36:45,960
DISABILITIES I -- DISABILITY

1036
00:36:45,960 --> 00:36:46,920
REPRESENTATION IN THE SCIENTIFIC

1037
00:36:46,920 --> 00:36:48,760
WORKFORCE DECREASES THROUGHOUT

1038
00:36:48,760 --> 00:36:50,520
THE CAREER PATH, ACCOMMODATE

1039
00:36:50,520 --> 00:36:51,960
PEOPLE FOR DISABILITIES AND TO

1040
00:36:51,960 --> 00:36:53,680
EP ABLE THEM TO FUNCTION AT THE

1041
00:36:53,680 --> 00:36:55,000
HIGHEST LEVEL AT NIH

1042
00:36:55,000 --> 00:37:00,720
ENTERPRISES.

1043
00:37:00,720 --> 00:37:02,680
SUGGESTIONS FOR THE ACD --

1044
00:37:02,680 --> 00:37:04,520
COMING OUT OF THE ACD INCLUDED

1045
00:37:04,520 --> 00:37:05,400
UPDATING THE NIH MISSION

1046
00:37:05,400 --> 00:37:06,080
STATEMENT.

1047
00:37:06,080 --> 00:37:08,480
THAT MISSION STATEMENT IS TO

1048
00:37:08,480 --> 00:37:09,560
SEEK FUNDAMENTAL KNOWLEDGE ABOUT

1049
00:37:09,560 --> 00:37:11,160
THE NATURE AND BEHAVIOR OF

1050
00:37:11,160 --> 00:37:12,640
LIVING SYSTEMS AND THE

1051
00:37:12,640 --> 00:37:15,440
APPLICATION OF THAT KNOWLEDGE TO

1052
00:37:15,440 --> 00:37:17,240
ENHANCE HEALTH, LENGTHEN LIFE,

1053
00:37:17,240 --> 00:37:20,240
AND REDUCE ILLNESS AND

1054
00:37:20,240 --> 00:37:22,000
DISABILITY, AND THIS IS

1055
00:37:22,000 --> 00:37:26,080
CONSIDERED, YOU KNOW, A SIGN OF

1056
00:37:26,080 --> 00:37:30,120
ABLEISM AND THE NINDS MISSION

1057
00:37:30,120 --> 00:37:31,400
STATEMENT DOES NOT INCLUDE THE

1058
00:37:31,400 --> 00:37:33,160
TERM DISABILITY, IT'S REALLY TO

1059
00:37:33,160 --> 00:37:35,480
REDUCE THE BURDEN OF ILLNESS,

1060
00:37:35,480 --> 00:37:38,960
AND EVEN THAT, WE'RE THINKING OF

1061
00:37:38,960 --> 00:37:40,320
CHANGING IN CASE IT'S

1062
00:37:40,320 --> 00:37:43,040
INTERPRETED AS THE BURDEN FOR

1063
00:37:43,040 --> 00:37:43,200
WHO.

1064
00:37:43,200 --> 00:37:44,480
IF IT'S THE BURDEN OF SOCIETY,

1065
00:37:44,480 --> 00:37:45,280
THAT'S NOT OUR PLAN.

1066
00:37:45,280 --> 00:37:46,600
OUR PLAN IS REDUCE THE BURDEN

1067
00:37:46,600 --> 00:37:47,880
FOR THE INDIVIDUALS WHO ARE

1068
00:37:47,880 --> 00:37:48,440
SUFFERING.

1069
00:37:48,440 --> 00:37:50,040
SO WE'RE CONSIDERING HOW TO DEAL

1070
00:37:50,040 --> 00:37:54,480
WITH THAT ISSUE OURSELVES.

1071
00:37:54,480 --> 00:37:57,760
IIT ASKS US TO DEVELOP AN NIH

1072
00:37:57,760 --> 00:38:00,320
WIDE EFFORT TO IDENTIFY AND

1073
00:38:00,320 --> 00:38:01,880
ADDRESS ANY STRUCTURAL ABLEISM

1074
00:38:01,880 --> 00:38:03,760
THAT MAY EXIST AND ASK US TO

1075
00:38:03,760 --> 00:38:05,400
PROMOTE DISABILITY INCLUSION

1076
00:38:05,400 --> 00:38:07,360
INTERNALLY AND AT THE NIH FUNDED

1077
00:38:07,360 --> 00:38:09,160
EXTRAMURAL WORKFORCE.

1078
00:38:09,160 --> 00:38:10,560
EXPAND EFFORTS TO INCLUDE

1079
00:38:10,560 --> 00:38:12,200
DISABILITY COMMUNITIES AND THEIR

1080
00:38:12,200 --> 00:38:12,640
PERSPECTIVES.

1081
00:38:12,640 --> 00:38:15,600
AND CONDUCT RESEARCH ON HEALTH

1082
00:38:15,600 --> 00:38:16,360
DISPARITIES AFFECTING THOSE

1083
00:38:16,360 --> 00:38:19,320
PEOPLE WITH DISABILITIES.

1084
00:38:19,320 --> 00:38:21,200
AND ENSURE THAT DISABILITY

1085
00:38:21,200 --> 00:38:22,840
INCLUSION AND ANTI-ABLEISM ARE

1086
00:38:22,840 --> 00:38:27,240
CORE COMPONENTS OF ALL DEI

1087
00:38:27,240 --> 00:38:27,840
EFFORTS.

1088
00:38:27,840 --> 00:38:30,240
OF INTEREST, THE NINDS HAS I

1089
00:38:30,240 --> 00:38:31,520
THINK REALLY BEEN AT THE

1090
00:38:31,520 --> 00:38:32,280
FOREFRONT.

1091
00:38:32,280 --> 00:38:33,760
OUR FOLKS PUT TOGETHER A

1092
00:38:33,760 --> 00:38:35,840
STRATEGIC PLAN WITH CORE IDEALS

1093
00:38:35,840 --> 00:38:38,480
TO MAKE US A REALLY WELCOMING

1094
00:38:38,480 --> 00:38:39,720
COMMUNITY TO WORK IN FOR

1095
00:38:39,720 --> 00:38:42,400
EVERYONE.

1096
00:38:42,400 --> 00:38:44,200
AND ONE OF THE THINGS WE DO TO

1097
00:38:44,200 --> 00:38:47,000
DO THAT IS TO HOLD COMMUNITY

1098
00:38:47,000 --> 00:38:48,000
CONVERSATIONS WHICH ARE LIKE

1099
00:38:48,000 --> 00:38:51,400
TOWN HALLS ON DIFFERENT TOPICS,

1100
00:38:51,400 --> 00:38:52,800
SOMETIMES WITH PRESENTATIONS,

1101
00:38:52,800 --> 00:38:54,240
AND YOU CAN SEE THE KIND OF

1102
00:38:54,240 --> 00:38:57,880
THINGS WE TALKED ABOUT, MICRO

1103
00:38:57,880 --> 00:38:59,200
AGGRESSIONS, ANTI-ASIAN BIAS,

1104
00:38:59,200 --> 00:39:01,400
AND THEN WE HAD ONE OCTOBER 14TH

1105
00:39:01,400 --> 00:39:06,320
WHICH WAS REALLY FANTASTIC ON

1106
00:39:06,320 --> 00:39:07,080
UNDERSTANDING THE ISSUES FACED

1107
00:39:07,080 --> 00:39:11,480
BY PEOPLE WHO DO HAVE

1108
00:39:11,480 --> 00:39:12,120
DISABILITIES, AND SO THIS IS

1109
00:39:12,120 --> 00:39:13,520
JUST A COUPLE THINGS TAKEN OUT,

1110
00:39:13,520 --> 00:39:17,960
WE HAD A GREAT TURNOUT, 485, 88%

1111
00:39:17,960 --> 00:39:22,400
OF OUR STAFF ATTENDED THIS

1112
00:39:22,400 --> 00:39:23,920
CONVERSATION.

1113
00:39:23,920 --> 00:39:27,200
AND 7%, WE SAID 9% OF THE

1114
00:39:27,200 --> 00:39:30,160
WORKFORCE FOR US IT'S 7% OF

1115
00:39:30,160 --> 00:39:31,960
THOSE RESPONDING INDICATED THEY

1116
00:39:31,960 --> 00:39:34,680
DID HAVE A DISABILITY.

1117
00:39:34,680 --> 00:39:36,520
ABOUT 5 DID NOT IDENTIFY YES OR

1118
00:39:36,520 --> 00:39:37,480
NO.

1119
00:39:37,480 --> 00:39:40,920
AND THE DISCUSSIONS WERE REALLY

1120
00:39:40,920 --> 00:39:41,520
POIGNANT.

1121
00:39:41,520 --> 00:39:43,120
PEOPLE TALKED ABOUT TROUBLES

1122
00:39:43,120 --> 00:39:48,000
THAT THEY'VE HAD, GIVEN THEIR

1123
00:39:48,000 --> 00:39:51,080
DISABILITIES, AND ALSO

1124
00:39:51,080 --> 00:39:51,840
SUGGESTIONS ABOUT HOW THINGS

1125
00:39:51,840 --> 00:39:53,720
COULD BE SO MUCH BETTER, AND SO

1126
00:39:53,720 --> 00:39:55,800
WE'RE TAKING THOSE TO HEART TO

1127
00:39:55,800 --> 00:39:57,880
MAKE OUR INSTITUTION A REALLY

1128
00:39:57,880 --> 00:40:00,320
FANTASTIC PLACE TO WORK FOR

1129
00:40:00,320 --> 00:40:03,160
EVERYONE.

1130
00:40:03,160 --> 00:40:05,000
THE NEXT ADVISORY COMMITTEE TO

1131
00:40:05,000 --> 00:40:06,360
THE DIRECTOR, I WANTED TO

1132
00:40:06,360 --> 00:40:09,880
MENTION, IS LOOKING AT THE ISSUE

1133
00:40:09,880 --> 00:40:14,320
ABOUT DECLINE IN POSTDOCTORAL

1134
00:40:14,320 --> 00:40:18,120
STUDENTS AND TRAINEES.

1135
00:40:18,120 --> 00:40:20,520
SO YOU MAY HAVE SEEN IN THE

1136
00:40:20,520 --> 00:40:22,040
LITERATURE THE CASE OF THE

1137
00:40:22,040 --> 00:40:23,000
DISAPPEARING POSTDOCS.

1138
00:40:23,000 --> 00:40:25,240
I CERTAINLY IN EVERY KIND OF

1139
00:40:25,240 --> 00:40:28,200
CONVERSATION THAT I'VE HAD WITH

1140
00:40:28,200 --> 00:40:29,960
RESEARCHERS AND RESEARCH

1141
00:40:29,960 --> 00:40:34,440
INSTITUTIONS, THIS COMES UP AS

1142
00:40:34,440 --> 00:40:36,240
A -- ALMOST NUMBER ONE PROBLEM,

1143
00:40:36,240 --> 00:40:37,560
DECLINE IN THE NUMBER OF

1144
00:40:37,560 --> 00:40:38,440
POSTDOCS.

1145
00:40:38,440 --> 00:40:40,600
SO NIH CAN PUT OUT MORE FUNDING,

1146
00:40:40,600 --> 00:40:41,600
OFTEN TIME THAT WORK IS DONE

1147
00:40:41,600 --> 00:40:43,600
BEEN THE POSTDOCS, SO THIS IS A

1148
00:40:43,600 --> 00:40:44,680
TREMENDOUS EFFECT ON WHAT WE CAN

1149
00:40:44,680 --> 00:40:45,800
GET DONE WITH OUR FUNDING AS

1150
00:40:45,800 --> 00:40:48,440
WELL.

1151
00:40:48,440 --> 00:40:51,800
AS WELL AS THE FACT THAT WE'RE

1152
00:40:51,800 --> 00:40:53,640
TRYING TO HELP PEOPLE DEVELOP

1153
00:40:53,640 --> 00:40:56,120
ACADEMIC CAREERS OR CAREERS IN

1154
00:40:56,120 --> 00:40:57,640
INDUSTRY THAT ARE GOING TO

1155
00:40:57,640 --> 00:41:00,280
ADVANCE OUR MISSION.

1156
00:41:00,280 --> 00:41:02,000
SO THE COMMITTEE WILL EVALUATE

1157
00:41:02,000 --> 00:41:04,200
THE PERCEIVED SHORTAGE OF

1158
00:41:04,200 --> 00:41:05,560
PH.D.s SEEKING POSTDOCS.

1159
00:41:05,560 --> 00:41:07,680
LOOK AT THE FACTORS UNDERLYING

1160
00:41:07,680 --> 00:41:08,440
THIS, COMPARE DIFFERENT

1161
00:41:08,440 --> 00:41:11,520
APPROACHES TO POSTDOCTORAL

1162
00:41:11,520 --> 00:41:12,840
TRAINING, FIGURING OUT WAYS TO

1163
00:41:12,840 --> 00:41:15,080
BETTER IMPROVE THE QUALITY OF

1164
00:41:15,080 --> 00:41:16,680
LIFE/WORK BALANCE AND INCREASE

1165
00:41:16,680 --> 00:41:18,880
RETENTION IN SCIENCE AT THIS

1166
00:41:18,880 --> 00:41:21,640
POSTDOC LEVEL.

1167
00:41:21,640 --> 00:41:26,720
THESE ARE THE MEMBERS OF THE

1168
00:41:26,720 --> 00:41:28,680
COMMITTEE.

1169
00:41:28,680 --> 00:41:32,120
NOTE THAT NINA SCHOR, NOW THE

1170
00:41:32,120 --> 00:41:33,200
DIRECTOR OF INTRAMURAL, IS ON

1171
00:41:33,200 --> 00:41:34,600
THE COMMITTEE, AND HERE IS A

1172
00:41:34,600 --> 00:41:35,960
COUPLE OF NUMBERS.

1173
00:41:35,960 --> 00:41:38,200
THIS IS I THINK NATIONAL SCIENCE

1174
00:41:38,200 --> 00:41:40,480
FOUNDATION DATA ON THE NUMBER OF

1175
00:41:40,480 --> 00:41:41,000
POSTDOCS OVER TIME.

1176
00:41:41,000 --> 00:41:42,360
YOU CAN SEE THIS DECLINE THAT

1177
00:41:42,360 --> 00:41:44,040
OCCURRED STARTING AROUND 2010,

1178
00:41:44,040 --> 00:41:45,880
MAYBE A LITTLE PICKUP, BUT THEN

1179
00:41:45,880 --> 00:41:47,240
ANOTHER DECLINE.

1180
00:41:47,240 --> 00:41:51,840
THIS IS THE DECLINE OF POSTDOCS

1181
00:41:51,840 --> 00:41:56,120
SUPPORTED ON NIH TRAINING

1182
00:41:56,120 --> 00:41:59,280
GRANTS, SO WE'RE SEEING LOWER

1183
00:41:59,280 --> 00:42:01,480
POSTDOC NUMBERS OVERALL, FEWER

1184
00:42:01,480 --> 00:42:03,240
F32, THESE ARE THE POSTDOC

1185
00:42:03,240 --> 00:42:04,000
APPLICATIONS AND AWARDS.

1186
00:42:04,000 --> 00:42:05,360
THE STIPENDS HAVE INCREASED BUT

1187
00:42:05,360 --> 00:42:07,880
NOT PACING INDUSTRY.

1188
00:42:07,880 --> 00:42:10,400
THE NUMBER OF GRAD STUDENTS

1189
00:42:10,400 --> 00:42:12,000
PLANNING ACADEMIC POSTDOCS

1190
00:42:12,000 --> 00:42:13,280
CONTINUES DOWNWARD TREND.

1191
00:42:13,280 --> 00:42:15,360
GRAD STUDENTS AND POSTDOCS ARE

1192
00:42:15,360 --> 00:42:16,560
REPORTING DOWNWARD TREND IN THE

1193
00:42:16,560 --> 00:42:18,320
QUALITY OF LIFE, AND THAT'S

1194
00:42:18,320 --> 00:42:19,800
WORSE REPORTS FROM INTERNATIONAL

1195
00:42:19,800 --> 00:42:21,320
TRAINEES.

1196
00:42:21,320 --> 00:42:22,480
AND ANECDOTAL DISCUSSIONS LIKE

1197
00:42:22,480 --> 00:42:26,080
THE ONES I MENTIONED, WE'VE HAD

1198
00:42:26,080 --> 00:42:27,080
SAY WITH SOCIETY FOR

1199
00:42:27,080 --> 00:42:28,040
NEUROSCIENCE, SUGGESTS THE

1200
00:42:28,040 --> 00:42:30,440
TRENDS ARE WORSENING SINCE 2020.

1201
00:42:30,440 --> 00:42:32,240
AT NINDS, HERE'S OUR DATA.

1202
00:42:32,240 --> 00:42:34,120
YOU CAN SEE THE F32s IN THE

1203
00:42:34,120 --> 00:42:39,560
LIGHT GREEN HAVE BEEN DECLINING

1204
00:42:39,560 --> 00:42:40,920
SIGNIFICANTLY OVER THE LAST FIVE

1205
00:42:40,920 --> 00:42:42,560
TO SIX YEARS.

1206
00:42:42,560 --> 00:42:44,520
THIS HAS BEEN SOMEWHAT BALANCED

1207
00:42:44,520 --> 00:42:47,200
BY AN INCREASE IN THE NUMBER OF

1208
00:42:47,200 --> 00:42:49,920
K99 APPLICATIONS AWARDED AND

1209
00:42:49,920 --> 00:42:50,360
RECEIVED.

1210
00:42:50,360 --> 00:42:54,040
THE K99s ARE ACTUALLY FUNDING

1211
00:42:54,040 --> 00:42:55,440
PEOPLE TO DO WORK IN THE END OF

1212
00:42:55,440 --> 00:42:59,040
THEIR POSTDOC AND THEN

1213
00:42:59,040 --> 00:43:01,680
TRANSITION THEM TO A PERMANENT

1214
00:43:01,680 --> 00:43:06,400
POSITION IN THE R00 PHASE.

1215
00:43:06,400 --> 00:43:09,480
SO THOSE ARE ALSO INCREDIBLY

1216
00:43:09,480 --> 00:43:10,360
VALUABLE, THAT'S WHAT REALLY

1217
00:43:10,360 --> 00:43:11,440
GETS PEOPLE INTO THE JOBS, BUT

1218
00:43:11,440 --> 00:43:16,800
WE NEED THAT WORKFORCE --

1219
00:43:16,800 --> 00:43:18,760
POSTDOC WORKFORCE UNDERNEATH TO

1220
00:43:18,760 --> 00:43:19,640
GET TO THAT LEVEL.

1221
00:43:19,640 --> 00:43:21,440
NOW THE GOOD NEWS IS THAT EARLY

1222
00:43:21,440 --> 00:43:23,000
STAGE INVESTIGATORS, AGAIN,

1223
00:43:23,000 --> 00:43:24,280
PEOPLE WHO JUST GOT THEIR FIRST

1224
00:43:24,280 --> 00:43:26,600
JOB AND THIS IS THEIR FIRST

1225
00:43:26,600 --> 00:43:28,080
GRANT, THOSE NUMBERS ARE GOING

1226
00:43:28,080 --> 00:43:32,880
UP ACROSS NIH AND ACROSS NINDS.

1227
00:43:32,880 --> 00:43:34,200
I THINK WE WERE A LITTLE BIT

1228
00:43:34,200 --> 00:43:35,600
AHEAD OF THE CURVE YEARS AGO,

1229
00:43:35,600 --> 00:43:36,920
AND NOW WE'RE JUST STILL A

1230
00:43:36,920 --> 00:43:39,240
LITTLE BIT ABOVE, WE FUND ABOUT

1231
00:43:39,240 --> 00:43:43,600
7% OF THE NIH ESIs IN '22, AND

1232
00:43:43,600 --> 00:43:44,960
WE'RE ABOUT 6% OF THE NIH

1233
00:43:44,960 --> 00:43:47,480
BUDGET.

1234
00:43:47,480 --> 00:43:48,920
SO EARLY STAGE INVESTIGATORS ARE

1235
00:43:48,920 --> 00:43:50,680
BEING FUNDED, WHICH MEANS JOBS

1236
00:43:50,680 --> 00:43:56,040
ARE OPENING UP FOR THESE NEW

1237
00:43:56,040 --> 00:43:59,040
PEOPLE, AND THIS K99 IN THE

1238
00:43:59,040 --> 00:44:01,000
EARLY STAGE INVESTIGATIVE BUMP,

1239
00:44:01,000 --> 00:44:03,440
WE FUND UP TO THE 25 PERCENTILE

1240
00:44:03,440 --> 00:44:04,760
FOR EARLY STAGE INVESTIGATORS, I

1241
00:44:04,760 --> 00:44:06,480
THINK IS REALLY HELPING TO GET

1242
00:44:06,480 --> 00:44:08,400
THESE JOBS OPEN.

1243
00:44:08,400 --> 00:44:09,520
THERE'S ANOTHER ADVISORY

1244
00:44:09,520 --> 00:44:11,240
COMMITTEE TO THE DIRECTOR GROUP

1245
00:44:11,240 --> 00:44:12,480
I WANTED TO BRING YOUR ATTENTION

1246
00:44:12,480 --> 00:44:13,920
TO, AND THIS GROUP IS LOOKING AT

1247
00:44:13,920 --> 00:44:16,400
HOW TO CATALYZE THE DEVELOPMENT

1248
00:44:16,400 --> 00:44:18,880
AND THE USE OF NOVEL,

1249
00:44:18,880 --> 00:44:19,880
NON-ANIMAL-BASED APPROACHES TO

1250
00:44:19,880 --> 00:44:22,760
ADVANCE BIOMEDICAL RESEARCH.

1251
00:44:22,760 --> 00:44:23,960
SO THEY'RE LOOKING AT

1252
00:44:23,960 --> 00:44:25,000
ALTERNATIVE METHODS BEING

1253
00:44:25,000 --> 00:44:27,160
DEVELOPED IN BIOMEDICAL RESEARCH

1254
00:44:27,160 --> 00:44:29,040
TO ASSESS THE STRENGTHS AND

1255
00:44:29,040 --> 00:44:31,280
WEAKNESSES FOR STUDYING HUMAN

1256
00:44:31,280 --> 00:44:32,720
BIOLOGY, CIRCUITS, SYSTEMS AND

1257
00:44:32,720 --> 00:44:36,320
DISEASE SYSTEMS.

1258
00:44:36,320 --> 00:44:40,400
NIMH -- I'M SORRY, NINDS AND DRD

1259
00:44:40,400 --> 00:44:42,360
THAT THESE METHODS WOULD MOST

1260
00:44:42,360 --> 00:44:44,080
LIKELY BE CONSIDERED

1261
00:44:44,080 --> 00:44:45,720
COMPLEMENTARY TO NEUROSCIENCE

1262
00:44:45,720 --> 00:44:48,240
RESEARCH THAT CAN ONLY BE

1263
00:44:48,240 --> 00:44:49,640
PERFORMED IN ANIMALS AND HUMANS.

1264
00:44:49,640 --> 00:44:51,160
IT'S HARD FOR US TO IMAGINE HOW

1265
00:44:51,160 --> 00:44:52,960
THE TECHNOLOGIES NOW AVAILABLE

1266
00:44:52,960 --> 00:44:55,080
ARE ACTUALLY ALTERNATIVES, BUT

1267
00:44:55,080 --> 00:45:02,400
CERTAINLY COMPLEMENTARY.

1268
00:45:02,400 --> 00:45:03,600
AND THESE ARE THE MEMBERS OF

1269
00:45:03,600 --> 00:45:06,240
THAT COMMITTEE, AND YOU REMEMBER

1270
00:45:06,240 --> 00:45:09,360
ARNOLD KRIEGSTEIN, NINDS

1271
00:45:09,360 --> 00:45:11,000
COUNCILMEMBER RECENTLY, IS PART

1272
00:45:11,000 --> 00:45:14,800
OF THAT GROUP.

1273
00:45:14,800 --> 00:45:16,600
JUST TO END UP, I WANTED TO SAY

1274
00:45:16,600 --> 00:45:18,240
THAT AS I MENTIONED IN THE

1275
00:45:18,240 --> 00:45:19,240
BEGINNING, OUR BUDGET HAS

1276
00:45:19,240 --> 00:45:20,240
INCREASED, WE HAVE GREAT NEED

1277
00:45:20,240 --> 00:45:21,720
FOR PEOPLE WHO WANT TO COME IN

1278
00:45:21,720 --> 00:45:25,160
AND MAKE A NATIONAL IMPACT ON

1279
00:45:25,160 --> 00:45:27,720
NEUROSCIENCE RESEARCH, AND SO WE

1280
00:45:27,720 --> 00:45:29,200
ARE HIRING, WE'RE LOOKING FOR

1281
00:45:29,200 --> 00:45:30,920
PEOPLE AND PROGRAM DIRECTOR,

1282
00:45:30,920 --> 00:45:33,440
PROGRAM ANALYST IN MANY OF OUR

1283
00:45:33,440 --> 00:45:35,880
DIFFERENT DIVISIONS, AND ALL

1284
00:45:35,880 --> 00:45:37,840
BECAUSE THE GROWTH OF THE

1285
00:45:37,840 --> 00:45:38,760
RESEARCH THAT -- BECAUSE OF THE

1286
00:45:38,760 --> 00:45:40,680
GROWTH OF THE RESEARCH THAT NOW

1287
00:45:40,680 --> 00:45:43,480
WE ARE STEWARDING.

1288
00:45:43,480 --> 00:45:45,040
AND JUST TO END UP BY SAYING

1289
00:45:45,040 --> 00:45:47,120
THAT THERE'S BEEN LOTS OF

1290
00:45:47,120 --> 00:45:49,840
PROGRESS EACH YEAR AT THIS TIME.

1291
00:45:49,840 --> 00:45:51,280
I TRY AND JUST THROW OUT A

1292
00:45:51,280 --> 00:45:53,520
COUPLE OF TIDBITS, BUT THESE ARE

1293
00:45:53,520 --> 00:45:54,920
TIDBITS -- THESE ARE TIPS OF THE

1294
00:45:54,920 --> 00:45:56,400
ICEBERG FOR ALL THE FANTASTIC

1295
00:45:56,400 --> 00:46:00,560
SCIENCE RESEARCH THAT'S GONE ON

1296
00:46:00,560 --> 00:46:02,080
ACROSS THE COUNTRY IN THE LAST

1297
00:46:02,080 --> 00:46:02,280
YEAR.

1298
00:46:02,280 --> 00:46:03,520
THESE ARE A COUPLE OF EXAMPLES

1299
00:46:03,520 --> 00:46:04,760
THAT WERE IN MY DIRECTOR'S

1300
00:46:04,760 --> 00:46:07,400
MESSAGE CALLED REFLECTING BACK

1301
00:46:07,400 --> 00:46:09,120
ON 2022, AND I CAN'T GO THROUGH

1302
00:46:09,120 --> 00:46:11,640
ALL OF THEM NOW, I'D LOVE TO,

1303
00:46:11,640 --> 00:46:12,840
BUT IT WOULD PROBABLY TAKE TOO

1304
00:46:12,840 --> 00:46:15,400
MUCH TIME, BUT THESE HAVE BEEN

1305
00:46:15,400 --> 00:46:17,880
REALLY FANTASTIC ADVANCES IN

1306
00:46:17,880 --> 00:46:19,360
MANY DIFFERENT ASPECTS OF

1307
00:46:19,360 --> 00:46:20,360
NEUROSCIENCE AND NEUROLOGICAL

1308
00:46:20,360 --> 00:46:20,720
DISORDERS.

1309
00:46:20,720 --> 00:46:21,520
SO WITH THAT, I WANT TO THANK

1310
00:46:21,520 --> 00:46:23,200
YOU FOR YOUR ATTENTION, HAPPY TO

1311
00:46:23,200 --> 00:46:32,640
ANSWER ANY QUESTIONS.

1312
00:46:32,640 --> 00:46:34,080
HAPPY TO ANSWER ANY QUESTIONS IF

1313
00:46:34,080 --> 00:46:36,000
ANYBODY WANTED TO BRING ANYTHING

1314
00:46:36,000 --> 00:46:39,120
UP?

1315
00:46:39,120 --> 00:46:40,840
GINA, YOU MUST HAVE SOMETHING.

1316
00:46:40,840 --> 00:46:42,920
>>YEAH, I'VE GOT A FEW.

1317
00:46:42,920 --> 00:46:44,080
OKAY.

1318
00:46:44,080 --> 00:46:46,400
SO THE BUDGET HAS ROUGHLY

1319
00:46:46,400 --> 00:46:47,840
DOUBLED SINCE YOU HAVE BECOME

1320
00:46:47,840 --> 00:46:50,480
DIRECTOR, AND YET THE PERSONNEL

1321
00:46:50,480 --> 00:46:50,880
HAVEN'T.

1322
00:46:50,880 --> 00:46:53,440
I THINK THAT THAT MIGHT MEAN

1323
00:46:53,440 --> 00:46:56,360
PROBABLY THAT THE PERSONNEL

1324
00:46:56,360 --> 00:47:00,560
EXISTING AT NINDS ARE OVERTAXED,

1325
00:47:00,560 --> 00:47:02,120
ESPECIALLY WITH TOO MANY GRANTS

1326
00:47:02,120 --> 00:47:07,120
TO HANDLE AND NOT ENOUGH PROGRAM

1327
00:47:07,120 --> 00:47:08,320
OFFICERS AND PROGRAM ANALYSTS.

1328
00:47:08,320 --> 00:47:09,640
I KNOW YOU WERE HIRING, THAT'S

1329
00:47:09,640 --> 00:47:10,840
ONE OF THE LAST THINGS YOU SAID,

1330
00:47:10,840 --> 00:47:11,280
THAT'S WONDERFUL.

1331
00:47:11,280 --> 00:47:13,920
IS THERE A WAY TO SHIFT AROUND

1332
00:47:13,920 --> 00:47:15,440
THE NUMBERS SO YOU CAN ACTUALLY

1333
00:47:15,440 --> 00:47:18,960
HIRE ENOUGH TO BE -- TO SERVICE

1334
00:47:18,960 --> 00:47:23,880
THE GRANTS AND THE RESEARCHERS

1335
00:47:23,880 --> 00:47:26,200
AS WELL AS THEY USED TO?

1336
00:47:26,200 --> 00:47:26,960
IS THAT THE PLAN?

1337
00:47:26,960 --> 00:47:32,480
>>OH, ABSOLUTELY.

1338
00:47:32,480 --> 00:47:35,320
MY UNDERSTANDING IS THAT THEY

1339
00:47:35,320 --> 00:47:37,280
ARE AS RESPONSIVE AS THEY ALWAYS

1340
00:47:37,280 --> 00:47:37,600
WERE.

1341
00:47:37,600 --> 00:47:39,720
THEY MIGHT BE A LITTLE BIT MORE

1342
00:47:39,720 --> 00:47:43,440
UNDER THE PRESSURE, BUT IF

1343
00:47:43,440 --> 00:47:44,560
THAT'S NOT THE CASE, WE'D LIKE

1344
00:47:44,560 --> 00:47:48,160
TO KNOW ABOUT IT.

1345
00:47:48,160 --> 00:47:49,840
RESPONSIVENESS FOR SURE, THAT

1346
00:47:49,840 --> 00:47:50,480
ALWAYS COMES FIRST.

1347
00:47:50,480 --> 00:47:54,400
>>IT MIGHT BE THAT, YOU
KNOW,

1348
00:47:54,400 --> 00:47:57,600
THE PEOPLE IN THE EMPLOYEE --

1349
00:47:57,600 --> 00:47:59,680
EMPLOYMENT, UNDER EMPLOYMENT OF

1350
00:47:59,680 --> 00:48:00,880
NINDS AREN'T COMPLAINING BUT IT

1351
00:48:00,880 --> 00:48:02,440
ALSO MIGHT BE THAT THEY ARE

1352
00:48:02,440 --> 00:48:04,920
SUPER STRESSED AND IT MIGHT

1353
00:48:04,920 --> 00:48:07,040
BE -- MAYBE WE CAN DO AN

1354
00:48:07,040 --> 00:48:10,360
INTERNAL COMMITTEE THAT STUDIES

1355
00:48:10,360 --> 00:48:14,160
THE HEALTH AND WELLNESS AND

1356
00:48:14,160 --> 00:48:15,280
TURNOVER OF CURRENT STAFF JUST

1357
00:48:15,280 --> 00:48:19,200
TO MAKE SURE THAT IT IS INDEED

1358
00:48:19,200 --> 00:48:20,640
HEALTHY AND WE ARE HIRING AT THE

1359
00:48:20,640 --> 00:48:22,400
APPROPRIATE LEVELS, MY

1360
00:48:22,400 --> 00:48:22,680
SUGGESTION.

1361
00:48:22,680 --> 00:48:23,960
>>THANKS FOR THAT, GINA.

1362
00:48:23,960 --> 00:48:25,840
YEAH, I THINK THEY ARE

1363
00:48:25,840 --> 00:48:26,480
OVERSTRESSED, NO QUESTION ABOUT

1364
00:48:26,480 --> 00:48:27,560
IT.

1365
00:48:27,560 --> 00:48:29,560
IT'S NOT GOOD FOR THE HEALTH OF

1366
00:48:29,560 --> 00:48:32,960
THE GROUP, NO QUESTION ABOUT IT.

1367
00:48:32,960 --> 00:48:34,080
AND WE'VE BEEN TRYING EVERYTHING

1368
00:48:34,080 --> 00:48:35,720
WE CAN TO BRING IN PEOPLE.

1369
00:48:35,720 --> 00:48:39,760
WE'VE HAD SOME SUCCESS, BUT THE

1370
00:48:39,760 --> 00:48:41,400
REASON I BROUGHT IT UP IS WE

1371
00:48:41,400 --> 00:48:42,080
REALLY NEED HELP.

1372
00:48:42,080 --> 00:48:43,320
IT'S A GREAT JOB, PEOPLE DON'T

1373
00:48:43,320 --> 00:48:46,480
KNOW ABOUT IT ON THE OUTSIDE,

1374
00:48:46,480 --> 00:48:49,560
BUT WE HAVE I DON'T KNOW HOW

1375
00:48:49,560 --> 00:48:55,360
MANY VACANCIES OPEN.

1376
00:48:55,360 --> 00:48:57,200
>>28HSAs RIGHT NOW.

1377
00:48:57,200 --> 00:48:58,440
>>WHAT'S THAT?

1378
00:48:58,440 --> 00:48:58,920
>>28.

1379
00:48:58,920 --> 00:49:00,080
>>WOW!

1380
00:49:00,080 --> 00:49:00,840
THAT'S A LOT.

1381
00:49:00,840 --> 00:49:01,200
THAT'S A LOT.

1382
00:49:01,200 --> 00:49:02,400
SO ARE WE PAYING ENOUGH?

1383
00:49:02,400 --> 00:49:05,080
IS THAT WHY?

1384
00:49:05,080 --> 00:49:06,280
OR IS THERE A BETTER WAY TO GET

1385
00:49:06,280 --> 00:49:07,400
THE WORD OUT FOR THE JOBS THAT

1386
00:49:07,400 --> 00:49:13,320
ARE AVAILABLE?

1387
00:49:13,320 --> 00:49:15,680
>>EXACTLY RIGHT, WE NEED
TO GET

1388
00:49:15,680 --> 00:49:16,240
THE WORD OUT.

1389
00:49:16,240 --> 00:49:20,760
THE PAY, IT'S GS SCALE PAY, SO

1390
00:49:20,760 --> 00:49:29,520
THAT IS A PROBLEM MY SON IS A

1391
00:49:29,520 --> 00:49:31,000
LAWYER IN ENERGY AND HE GETS THE

1392
00:49:31,000 --> 00:49:32,920
SAME PAY.

1393
00:49:32,920 --> 00:49:36,680
SO IT'S SOMETHING YOU COME INTO

1394
00:49:36,680 --> 00:49:39,280
THE FEDERAL GOVERNMENT, YOU HAVE

1395
00:49:39,280 --> 00:49:39,600
STABILITY --

1396
00:49:39,600 --> 00:49:41,280
>>RETIREMENT.

1397
00:49:41,280 --> 00:49:46,120
>>BUT THE TOP PAY IS WHAT
NOW?

1398
00:49:46,120 --> 00:49:47,000
GS15 IS --

1399
00:49:47,000 --> 00:49:50,240
>>ABOUT 175,000, I
BELIEVE.

1400
00:49:50,240 --> 00:49:51,720
>>VERY TOP.

1401
00:49:51,720 --> 00:49:53,080
AND ON AVERAGE, MAYBE IT'S

1402
00:49:53,080 --> 00:49:54,040
SOMETHING ELSE.

1403
00:49:54,040 --> 00:49:55,360
AND YOU KNOW, I DON'T KNOW ABOUT

1404
00:49:55,360 --> 00:49:57,280
THE COST OF LIVING IN BETHESDA,

1405
00:49:57,280 --> 00:49:59,680
BUT, YOU KNOW, IT MIGHT ALSO BE

1406
00:49:59,680 --> 00:50:01,000
THAT, YOU KNOW, PEOPLE DON'T

1407
00:50:01,000 --> 00:50:02,520
HAVE TO LIVE THERE.

1408
00:50:02,520 --> 00:50:06,840
THEY CAN LIVE IN OTHER PLACES.

1409
00:50:06,840 --> 00:50:08,360
>>YES, WE ARE DOING THAT.

1410
00:50:08,360 --> 00:50:10,680
WE HAVE HIRED A NUMBER OF PEOPLE

1411
00:50:10,680 --> 00:50:11,680
WHO DO NOT LIVE IN D.C. .

1412
00:50:11,680 --> 00:50:13,000
WE ACTUALLY HAVE A NUMBER OF

1413
00:50:13,000 --> 00:50:16,200
PEOPLE WHO MOVED OUT OF D.C. 

1414
00:50:16,200 --> 00:50:17,320
DURING COVID.

1415
00:50:17,320 --> 00:50:19,040
SO WE ARE TRYING TO PUT TOGETHER

1416
00:50:19,040 --> 00:50:21,160
THIS HYBRID WORK SPACE NOW WITH

1417
00:50:21,160 --> 00:50:24,160
PEOPLE WHO ARE REMOTE AND PEOPLE

1418
00:50:24,160 --> 00:50:27,600
WHO ARE ON CAMPUS.

1419
00:50:27,600 --> 00:50:29,040
WE REALLY NEED MORE PEOPLE GIVEN

1420
00:50:29,040 --> 00:50:30,040
THE DOUBLING OF THE BUDGET.

1421
00:50:30,040 --> 00:50:31,720
>>GINA, CAN YOU HEAR THE
SOUND

1422
00:50:31,720 --> 00:50:33,920
OF OUR STAFF APPLAUDING IN THE

1423
00:50:33,920 --> 00:50:34,200
BACKGROUND?

1424
00:50:34,200 --> 00:50:40,200
>>I CAN'T, BUT I CAN
IMAGINE.

1425
00:50:40,200 --> 00:50:43,080
IT JUST SEEMS LIKE, THE PEOPLE

1426
00:50:43,080 --> 00:50:45,680
WHO ARE THERE ARE DOING HEROS'

1427
00:50:45,680 --> 00:50:48,440
WORK AND I APPLAUD ALL OF YOU.

1428
00:50:48,440 --> 00:50:50,080
I WOULD JUST LOVE TO SEE MORE

1429
00:50:50,080 --> 00:50:52,400
SUPPORT, ESPECIALLY GIVEN THE

1430
00:50:52,400 --> 00:50:53,360
DOUBLING OF THE BUDGET OVER THE

1431
00:50:53,360 --> 00:50:53,560
YEARS.

1432
00:50:53,560 --> 00:50:54,920
>>YOU DON'T HAVE TO WORRY
ABOUT

1433
00:50:54,920 --> 00:50:57,000
PEOPLE NOT MAKING THEIR STRESS

1434
00:50:57,000 --> 00:50:57,520
KNOWN.

1435
00:50:57,520 --> 00:50:58,560
THEY DEFINITELY ARE.

1436
00:50:58,560 --> 00:50:59,960
>>WELL, GOOD.

1437
00:50:59,960 --> 00:51:00,560
GOOD.

1438
00:51:00,560 --> 00:51:02,520
BUT MAYBE THERE SHOULD BE A

1439
00:51:02,520 --> 00:51:03,560
CONCERTED EFFORT OR A COMMITTEE

1440
00:51:03,560 --> 00:51:06,040
THAT ACTUALLY ASKS THE HARD

1441
00:51:06,040 --> 00:51:06,320
QUESTIONS.

1442
00:51:06,320 --> 00:51:08,720
>>YES, WE ACTUALLY HAVE
EVEN

1443
00:51:08,720 --> 00:51:09,560
CONSIDERED HIRING A CONTRACTOR

1444
00:51:09,560 --> 00:51:11,560
TO REALLY LOOK AT THIS.

1445
00:51:11,560 --> 00:51:13,520
WE ARE FULL-FLEDGED LOOKING INTO

1446
00:51:13,520 --> 00:51:13,720
THIS.

1447
00:51:13,720 --> 00:51:14,560
>>GREAT.

1448
00:51:14,560 --> 00:51:16,320
>>I SEE KEN HAS A
QUESTION.

1449
00:51:16,320 --> 00:51:17,280
>>THANK YOU.

1450
00:51:17,280 --> 00:51:20,040
SO I ACTUALLY -- JUST A QUICK

1451
00:51:20,040 --> 00:51:21,280
FOLLOW-UP FROM THE POINT THAT

1452
00:51:21,280 --> 00:51:22,720
GINA JUST RAISED.

1453
00:51:22,720 --> 00:51:25,520
I'M ASSUMING THAT EXIT

1454
00:51:25,520 --> 00:51:28,840
INTERVIEWS ARE CONDUCTED,

1455
00:51:28,840 --> 00:51:29,840
BECAUSE THAT'S THE KIND OF

1456
00:51:29,840 --> 00:51:30,960
INFORMATION THAT MIGHT HELP YOU

1457
00:51:30,960 --> 00:51:32,800
GET TO ROOT CAUSE.

1458
00:51:32,800 --> 00:51:36,680
YOU KNOW, SALARY IS ALWAYS --

1459
00:51:36,680 --> 00:51:38,120
SURE, ABSOLUTELY, BUT THERE

1460
00:51:38,120 --> 00:51:39,000
COULD BE OTHER THINGS.

1461
00:51:39,000 --> 00:51:41,200
AND BY DOING EXIT INTERVIEWS,

1462
00:51:41,200 --> 00:51:43,720
ESPECIALLY IF YOU HAVE PEOPLE

1463
00:51:43,720 --> 00:51:45,200
HEADING FOR THE HILLS IN ONE

1464
00:51:45,200 --> 00:51:46,120
PARTICULAR AREA OF YOUR

1465
00:51:46,120 --> 00:51:49,360
INSTITUTE, IT MIGHT HELP.

1466
00:51:49,360 --> 00:51:50,040
>>AMY?

1467
00:51:50,040 --> 00:51:53,640
>>I DO WANT TO JUST SAY
THAT I

1468
00:51:53,640 --> 00:51:54,680
THINK -- THAT'S AN IMPORTANT

1469
00:51:54,680 --> 00:51:56,720
POINT AND WE DO DO EXIT

1470
00:51:56,720 --> 00:51:57,840
INTERVIEWS BUT I WANT TO ALSO

1471
00:51:57,840 --> 00:51:59,240
NOTE THAT OUR BIGGEST CHALLENGE

1472
00:51:59,240 --> 00:52:01,920
RIGHT NOW IS RECRUITMENT.

1473
00:52:01,920 --> 00:52:03,760
RETENTION IS ABSOLUTELY

1474
00:52:03,760 --> 00:52:04,760
IMPORTANT, AND SOMETHING FOR US

1475
00:52:04,760 --> 00:52:07,080
TO FOCUS ON.

1476
00:52:07,080 --> 00:52:08,720
WE HAVE INCREDIBLE STAFF AND WE

1477
00:52:08,720 --> 00:52:11,600
WANT TO KEEP THEM AND KEEP THEM

1478
00:52:11,600 --> 00:52:17,480
HAPPY IN THEIR JOB.

1479
00:52:17,480 --> 00:52:19,040
BUT THE REAL PAIN POINT RIGHT

1480
00:52:19,040 --> 00:52:20,200
NOW, AND IT IS ACUTE, IS

1481
00:52:20,200 --> 00:52:22,480
RECRUITING.

1482
00:52:22,480 --> 00:52:25,200
AND SO IN ADDITION TO ALL OF THE

1483
00:52:25,200 --> 00:52:26,480
IMPORTANT THINGS THAT WERE JUST

1484
00:52:26,480 --> 00:52:28,440
NOTED, ANY HELP THAT YOU CAN

1485
00:52:28,440 --> 00:52:33,520
GIVE US IN IDENTIFYING PEOPLE

1486
00:52:33,520 --> 00:52:35,160
THAT COULD CONTRIBUTE IN THIS

1487
00:52:35,160 --> 00:52:36,400
REALLY IMPORTANT AND MEANINGFUL

1488
00:52:36,400 --> 00:52:38,120
SPACE, WE WOULD WELCOME.

1489
00:52:38,120 --> 00:52:40,920
>>I WANT TO KEEP THIS
MOVING

1490
00:52:40,920 --> 00:52:41,120
ALONG.

1491
00:52:41,120 --> 00:52:41,280
KEN?

1492
00:52:41,280 --> 00:52:42,600
>>SURE, SO I'LL MAKE THE

1493
00:52:42,600 --> 00:52:43,040
COMMENT QUICK.

1494
00:52:43,040 --> 00:52:44,920
IT IS ACTUALLY JUST TO

1495
00:52:44,920 --> 00:52:46,800
CONGRATULATE NIH FOR, YOU KNOW,

1496
00:52:46,800 --> 00:52:48,320
DOING SOMETHING TO LEVEL THE

1497
00:52:48,320 --> 00:52:49,640
PLAYING FIELD IN THE GRANT

1498
00:52:49,640 --> 00:52:50,120
REVIEW SPACE.

1499
00:52:50,120 --> 00:52:53,480
YOU KNOW, I THINK THAT NIH BUT

1500
00:52:53,480 --> 00:52:54,960
ALSO PRIVATE FOUNDATIONS HAVE

1501
00:52:54,960 --> 00:52:56,600
STRUGGLED FOR YEARS TO TRY AND,

1502
00:52:56,600 --> 00:52:59,880
YOU KNOW, ELIMINATE THE BIG NAME

1503
00:52:59,880 --> 00:53:01,320
IVY LEAGUE, YOU KNOW,

1504
00:53:01,320 --> 00:53:04,640
INVESTIGATOR WHO'S HAD 20 R01s

1505
00:53:04,640 --> 00:53:05,720
TO ELIMINATE THAT KIND OF THING,

1506
00:53:05,720 --> 00:53:10,520
AND I THINK THAT THIS APPROACH

1507
00:53:10,520 --> 00:53:12,880
WILL DO A LOT TO ENHANCE NIH'S

1508
00:53:12,880 --> 00:53:15,240
EMPHASEMPHASIS ALSO ON DIVERSIT,

1509
00:53:15,240 --> 00:53:16,320
EQUITY AND INCLUSION, BECAUSE I

1510
00:53:16,320 --> 00:53:18,400
THINK WE ALL KNOW THAT WHEN YOU

1511
00:53:18,400 --> 00:53:20,040
HAVE DIVERSITY OF THOUGHT,

1512
00:53:20,040 --> 00:53:21,960
INNOVATION GOES UP, PRODUCTIVITY

1513
00:53:21,960 --> 00:53:26,000
DPRPRODUCTIVITYGOES UP, SO JUST

1514
00:53:26,000 --> 00:53:26,360
CONGRATULATIONS.

1515
00:53:26,360 --> 00:53:27,920
>>THANKS A LOT, KEN.

1516
00:53:27,920 --> 00:53:28,080
TIM?

1517
00:53:28,080 --> 00:53:31,000
>>I HAD A QUESTION ABOUT
THE

1518
00:53:31,000 --> 00:53:32,400
POSTDOC TRENDS WHICH WE'RE

1519
00:53:32,400 --> 00:53:33,960
ALL -- I'M SURE EVERYONE IS

1520
00:53:33,960 --> 00:53:37,520
ACUTELY AWARE OF, BUT THE DATA

1521
00:53:37,520 --> 00:53:39,000
CLEARLY LOOKED LIKE, WALTER,

1522
00:53:39,000 --> 00:53:41,560
FROM YOUR TALK, JUST FROM THE

1523
00:53:41,560 --> 00:53:42,560
F-32 APPLICANTS, THAT'S BEEN

1524
00:53:42,560 --> 00:53:44,880
GOING DOWN RATHER STEADILY, BUT

1525
00:53:44,880 --> 00:53:46,680
YET THE ESIs ARE AT LEAST

1526
00:53:46,680 --> 00:53:47,000
LEVEL.

1527
00:53:47,000 --> 00:53:48,200
THAT IMPLIES THAT THE PEOPLE

1528
00:53:48,200 --> 00:53:49,400
THAT WE'RE NO LONGER RECRUITING

1529
00:53:49,400 --> 00:53:52,120
ARE NOT THE ONES THAT WANTED

1530
00:53:52,120 --> 00:53:52,760
ACADEMIC JOBS.

1531
00:53:52,760 --> 00:53:54,720
THAT MUST BE STAYING CONSTANT IF

1532
00:53:54,720 --> 00:53:57,400
WE'RE STILL FEEDING ESIs,

1533
00:53:57,400 --> 00:53:57,720
RIGHT?

1534
00:53:57,720 --> 00:53:59,120
YET THE ONES WE'RE MISSING PLUB

1535
00:53:59,120 --> 00:54:00,880
PEOPLE THAT HAVE NO INTENTION OF

1536
00:54:00,880 --> 00:54:02,480
ACTUALLY -- OR NOT NO INTENTION

1537
00:54:02,480 --> 00:54:04,000
BUT IN THE END, THE ONES THAT

1538
00:54:04,000 --> 00:54:06,280
REALLY WANT TO GO ON ARE GOING

1539
00:54:06,280 --> 00:54:07,400
ON, WE'RE GETTING THOSE PEOPLE

1540
00:54:07,400 --> 00:54:08,200
AS POSTDOCS.

1541
00:54:08,200 --> 00:54:10,520
WE'RE MISSING THIS OTHER POOL.

1542
00:54:10,520 --> 00:54:12,240
I REALIZE WE NEED THEM TO DO THE

1543
00:54:12,240 --> 00:54:13,720
WORK, THEY DON'T ALL HAVE TO GO

1544
00:54:13,720 --> 00:54:15,920
ON TO ACADEMIA, BUT IT SUGGESTS

1545
00:54:15,920 --> 00:54:17,880
THAT AS ONE DIE SECRETARIES THIS

1546
00:54:17,880 --> 00:54:24,000
PROBLEDISSECTS THISPROBLEM, THEE

1547
00:54:24,000 --> 00:54:27,600
WE'RE NOT THINKING ABOUT.

1548
00:54:27,600 --> 00:54:29,160
>>MICHELLE JONES LONDON
DID

1549
00:54:29,160 --> 00:54:30,920
WHAT'S CALLED THE Y SURVEY AND

1550
00:54:30,920 --> 00:54:37,520
THAT'S PUBLISHED IN NERURO,

1551
00:54:37,520 --> 00:54:38,520
THAT'S ONE REALLY GOOD EXAMPLE

1552
00:54:38,520 --> 00:54:39,840
OF WHY PEOPLE DECIDE TO LEAVE.

1553
00:54:39,840 --> 00:54:41,240
A LOT OF GOOD PEOPLE DECIDE TO

1554
00:54:41,240 --> 00:54:42,400
LEAVE FOR VARIOUS REASONS.

1555
00:54:42,400 --> 00:54:44,360
SO WE'RE MISSING -- WE'RE

1556
00:54:44,360 --> 00:54:47,520
STARTING OFF WITH TALENT, AND A

1557
00:54:47,520 --> 00:54:49,960
LOT OF THAT TALENT IS DRIPPING

1558
00:54:49,960 --> 00:54:51,080
AWAY AND LEAKING OUT.

1559
00:54:51,080 --> 00:54:57,200
AND WH ONE OF THE BIGGEST IS IN

1560
00:54:57,200 --> 00:54:58,560
WOMEN WHO NOW MAKE UP MORE THAN

1561
00:54:58,560 --> 00:55:02,720
50% OF THE GRADUATE STUDENTS AND

1562
00:55:02,720 --> 00:55:04,400
POSTDOCS, THAT THE LEAK OUT OF

1563
00:55:04,400 --> 00:55:06,160
ACADEMIA OCCURS WHEN THEY START

1564
00:55:06,160 --> 00:55:07,040
TO HAVE CHILDREN.

1565
00:55:07,040 --> 00:55:08,880
SO THAT IS SOMETHING THAT HAS

1566
00:55:08,880 --> 00:55:12,680
NOTHING TO DO WITH WHETHER THEY

1567
00:55:12,680 --> 00:55:13,960
WANT TO BE GREAT SCIENTISTS.

1568
00:55:13,960 --> 00:55:15,240
IT'S JUST, LIFE GETS IN THE WAY

1569
00:55:15,240 --> 00:55:17,920
AND WE DON'T HAVE THE RIGHT

1570
00:55:17,920 --> 00:55:20,480
ACCOMMODATION FOR THOSE, YOU

1571
00:55:20,480 --> 00:55:20,720
KNOW --

1572
00:55:20,720 --> 00:55:22,080
>>I FULLY -- THAT POINT
HAS

1573
00:55:22,080 --> 00:55:23,320
BEEN MADE REALLY EFFECTIVELY FOR

1574
00:55:23,320 --> 00:55:24,760
A LONG TIME.

1575
00:55:24,760 --> 00:55:26,440
MY POINT IS THAT THE ESIs HAVE

1576
00:55:26,440 --> 00:55:27,640
NOT BEEN PLUMMETING AT THE SAME

1577
00:55:27,640 --> 00:55:29,400
RATE AT F-32s, WHICH MEANS

1578
00:55:29,400 --> 00:55:31,520
THAT WE'RE STILL FEEDING

1579
00:55:31,520 --> 00:55:32,480
ACADEMIA, I'M NOT TALKING ABOUT

1580
00:55:32,480 --> 00:55:33,360
THE GENDER BALANCE.

1581
00:55:33,360 --> 00:55:35,920
THAT HASN'T CHANGED, I AGREE.

1582
00:55:35,920 --> 00:55:37,040
BUT THERE'S SOMETHING UNUSUAL

1583
00:55:37,040 --> 00:55:38,560
GOING ON THAT WE'RE STILL

1584
00:55:38,560 --> 00:55:40,200
FEEDING -- IF IT WAS JUST

1585
00:55:40,200 --> 00:55:41,040
PROPORTIONAL, I'D SAY OKAY,

1586
00:55:41,040 --> 00:55:42,320
WE'RE NOT GETTING ENOUGH

1587
00:55:42,320 --> 00:55:43,480
POSTDOCS, WE'RE NOT PRODUCING

1588
00:55:43,480 --> 00:55:44,520
ENOUGH GOING INTO ACADEMIA

1589
00:55:44,520 --> 00:55:45,680
TOGETHER BUT WE ARE APPARENTLY

1590
00:55:45,680 --> 00:55:47,080
FILLING THE ACADEMIC JOBS.

1591
00:55:47,080 --> 00:55:50,160
>>WELL, I ACTUALLY WANT
TO TALK

1592
00:55:50,160 --> 00:55:51,400
ABOUT THAT LAST POINT THAT

1593
00:55:51,400 --> 00:55:53,280
WALTER SAID, WHICH IS HAS BEEN A

1594
00:55:53,280 --> 00:55:55,000
PROBLEM FOR A LONG TIME.

1595
00:55:55,000 --> 00:55:56,760
WHEN WOMEN HAVE CHILDREN,

1596
00:55:56,760 --> 00:56:00,320
THEY'THEYNO LONGER VIEW A SCIENC

1597
00:56:00,320 --> 00:56:02,720
ACADEMIC JOB AS A VIABLE JOB,

1598
00:56:02,720 --> 00:56:05,680
AND WHY IS THAT?

1599
00:56:05,680 --> 00:56:06,920
THAT ALSO REQUIRES THAT WE

1600
00:56:06,920 --> 00:56:09,640
SHOULD TAKE A HARD LOOK AT THE

1601
00:56:09,640 --> 00:56:12,640
CULTURE OF ACADEMIC RESEARCH AND

1602
00:56:12,640 --> 00:56:16,400
FIGURE OUT WAYS TO MAKE IT GOOD.

1603
00:56:16,400 --> 00:56:18,320
WHY SHOULD THIS SELECTIVELY

1604
00:56:18,320 --> 00:56:18,880
IMPACT WOMEN?

1605
00:56:18,880 --> 00:56:20,880
IT SHOULDN'T.

1606
00:56:20,880 --> 00:56:24,880
YOU KNOW, IT SHOULD AFFECT WOMEN

1607
00:56:24,880 --> 00:56:27,480
AND MEN EQUALLY, BUT IT DOESN'T,

1608
00:56:27,480 --> 00:56:28,440
AND WHY IS THAT THE CASE?

1609
00:56:28,440 --> 00:56:31,160
WHAT ARE WE NOT DOING TO

1610
00:56:31,160 --> 00:56:33,760
MAINTAIN AND RETAIN THIS

1611
00:56:33,760 --> 00:56:37,360
AMAZING, BEAUTIFUL, YOU KNOW,

1612
00:56:37,360 --> 00:56:39,320
INTELLECTUAL RESOURCE OF WOMEN

1613
00:56:39,320 --> 00:56:40,400
IN ACADEMIA.

1614
00:56:40,400 --> 00:56:47,520
AND IT A SERIOUS PROBLEM.

1615
00:56:47,520 --> 00:56:48,160
>>HANK?

1616
00:56:48,160 --> 00:56:50,760
>>I MAY TAKE US AWAY FROM
THIS

1617
00:56:50,760 --> 00:56:52,400
IMPORTANT DISCUSSION BUT IT'S A

1618
00:56:52,400 --> 00:56:53,400
SIMPLE POINT OF CLARIFICATION,

1619
00:56:53,400 --> 00:56:53,680
WALTER.

1620
00:56:53,680 --> 00:56:55,080
YOU MENTIONED THAT 10% OF THE

1621
00:56:55,080 --> 00:56:56,920
ALZHEIMER'S INITIATIVE IS

1622
00:56:56,920 --> 00:56:58,240
ADMINISTERED BY NINDS, AND THIS

1623
00:56:58,240 --> 00:57:01,600
YEAR YOU HAVE $75 MILLION.

1624
00:57:01,600 --> 00:57:03,920
THE QUESTION FROM ME IS, IS THAT

1625
00:57:03,920 --> 00:57:05,600
PART OF THAT 10% OR ABOVE AND

1626
00:57:05,600 --> 00:57:06,920
BEYOND THAT 10%?

1627
00:57:06,920 --> 00:57:10,880
>>IT WILL BE PART OF THAT
10%.

1628
00:57:10,880 --> 00:57:12,680
>>I'M SORRY, ARE YOU
TALKING

1629
00:57:12,680 --> 00:57:13,840
ABOUT THE A.L.S. MONEY, HANK?

1630
00:57:13,840 --> 00:57:15,400
>>NO, THIS WAS ADRD.

1631
00:57:15,400 --> 00:57:17,240
>>OH, ADRD.

1632
00:57:17,240 --> 00:57:18,320
YEAH, THAT'S PART OF IT.

1633
00:57:18,320 --> 00:57:21,000
>>BECAUSE WE GOT 75, BUT
WE

1634
00:57:21,000 --> 00:57:22,280
ACTUALLY MANAGE OVER

1635
00:57:22,280 --> 00:57:23,200
300 MILLION.

1636
00:57:23,200 --> 00:57:28,280
BUT WE'RE NOT SECEDING FROM THE

1637
00:57:28,280 --> 00:57:28,480
UNION.

1638
00:57:28,480 --> 00:57:29,200
>>SAMEER?

1639
00:57:29,200 --> 00:57:30,480
>>THANKS, WALTER.

1640
00:57:30,480 --> 00:57:31,760
SIMILAR TOPIC.

1641
00:57:31,760 --> 00:57:32,920
REGARDING BUDGET.

1642
00:57:32,920 --> 00:57:35,680
TYPICALLY WE SEE THE SORT OF

1643
00:57:35,680 --> 00:57:37,200
SLOW, STEADY INCREASE, AND

1644
00:57:37,200 --> 00:57:39,120
OBVIOUSLY WE CAN'T EXPECT IT BUT

1645
00:57:39,120 --> 00:57:40,440
IT HAS BEEN CONSISTENT OVER

1646
00:57:40,440 --> 00:57:41,520
YEARS.

1647
00:57:41,520 --> 00:57:45,440
THE BRAIN-BASED, YOU KNOW, TOOK

1648
00:57:45,440 --> 00:57:48,360
A BIG DECREASE THIS PAST BUDGET

1649
00:57:48,360 --> 00:57:50,040
CYCLE, SO I WONDER IF YOU HAVE A

1650
00:57:50,040 --> 00:57:51,320
SENSE OF READING THE TEA LEAVES

1651
00:57:51,320 --> 00:57:54,920
AS TO WHAT THAT MEANS, IS THAT

1652
00:57:54,920 --> 00:57:56,480
BALANCING SOMETHING ELSE OUT OR

1653
00:57:56,480 --> 00:58:01,000
IS THIS AN INDICATOR OF SOME

1654
00:58:01,000 --> 00:58:02,280
OTHER DISTRIBUTION OR PLAN?

1655
00:58:02,280 --> 00:58:05,760
>>I MEAN, THE TEA LEAVES
ARE

1656
00:58:05,760 --> 00:58:07,960
HARD TO READ, BUT AS YOU KNOW,

1657
00:58:07,960 --> 00:58:11,440
THINGS HAVE CHANGED DRAMATICALLY

1658
00:58:11,440 --> 00:58:15,720
IN THE CONGRESS.

1659
00:58:15,720 --> 00:58:17,800
AND IT HARD TO IMAGINE ANY OF

1660
00:58:17,800 --> 00:58:21,400
THOSE CHANGES ARE GOING TO BE

1661
00:58:21,400 --> 00:58:22,160
BENEFICIAL FOR NIH.

1662
00:58:22,160 --> 00:58:24,080
LET'S JUST PUT IT THAT WAY.

1663
00:58:24,080 --> 00:58:27,040
WE COULD BE WRONG, BUT WHAT WE

1664
00:58:27,040 --> 00:58:30,000
DO EVERY YEAR IS PREPARE FOR A

1665
00:58:30,000 --> 00:58:32,040
FLAT BUDGET, AND I WOULD SAY

1666
00:58:32,040 --> 00:58:33,200
THIS YEAR MORE THAN EVER, WE'RE

1667
00:58:33,200 --> 00:58:34,640
GOING TO HAVE TO PREPARE FOR A

1668
00:58:34,640 --> 00:58:38,120
FLAT BUDGET.

1669
00:58:38,120 --> 00:58:39,440
SO I'M NOT SURE I CAN SAY MUCH

1670
00:58:39,440 --> 00:58:42,680
MORE THAN THAT, BUT I THINK WE

1671
00:58:42,680 --> 00:58:43,960
HAVE TO PREPARE FOR A FLAT

1672
00:58:43,960 --> 00:58:47,520
BUDGET.

1673
00:58:47,520 --> 00:58:49,240
>>THANKS.

1674
00:58:49,240 --> 00:58:50,040
>>GINA.

1675
00:58:50,040 --> 00:58:52,200
>>I WANTED TO
CONGRATULATE YOU

1676
00:58:52,200 --> 00:58:53,720
ON A FANTASTIC ADDRESS BECAUSE

1677
00:58:53,720 --> 00:58:57,240
IT WAS SO MEATY AND INSPIRED SO

1678
00:58:57,240 --> 00:58:58,200
MANY QUESTIONS ON MY PART, BUT

1679
00:58:58,200 --> 00:59:02,400
ONE OF THEM IS THAT BLIND

1680
00:59:02,400 --> 00:59:04,080
REVIEW, OR THE POSSIBILITY OF

1681
00:59:04,080 --> 00:59:04,800
BLIND REVIEW.

1682
00:59:04,800 --> 00:59:06,200
I LIKE THE IDEA THAT WE'RE

1683
00:59:06,200 --> 00:59:08,400
SEPARATING OUT INSTITUTION AND

1684
00:59:08,400 --> 00:59:11,320
INVESTIGATOR REPUTATION, BUT I

1685
00:59:11,320 --> 00:59:12,320
DON'T THINK THAT'S GOING TO BE

1686
00:59:12,320 --> 00:59:14,240
ENOUGH TO IMPACT PEOPLE'S SCORES

1687
00:59:14,240 --> 00:59:22,440
AND TO CHANGE THE BIAS THAT

1688
00:59:22,440 --> 00:59:24,040
REPUTATION AND INSTITUTION GIVE

1689
00:59:24,040 --> 00:59:25,760
US, SO I WANTED TO SUGGEST THE

1690
00:59:25,760 --> 00:59:27,000
POSSIBILITY AGAIN OF ACTUAL

1691
00:59:27,000 --> 00:59:28,320
BLIND REVIEWS, JUST LIKE THEY

1692
00:59:28,320 --> 00:59:30,680
DID IN ASTRONOMY, OF TAKING OUT

1693
00:59:30,680 --> 00:59:32,960
ALL REFERENCE TO THE INSTITUTION

1694
00:59:32,960 --> 00:59:35,240
FROM THE REVIEWERS, AND TAKING

1695
00:59:35,240 --> 00:59:39,920
OUT ALL NAMES AND REFERENCES TO,

1696
00:59:39,920 --> 00:59:42,080
AS WE'VE SHOWN IN OUR EARLIER

1697
00:59:42,080 --> 00:59:42,960
WORK, BLAH, BLAH, BLAH, SO THAT

1698
00:59:42,960 --> 00:59:44,800
ACTUALLY IS TRULY, TRULY BLIND,

1699
00:59:44,800 --> 00:59:46,120
BECAUSE I THINK THAT'S THE ONLY

1700
00:59:46,120 --> 00:59:47,320
WAY WE'RE ACTUALLY GOING TO GET

1701
00:59:47,320 --> 00:59:51,240
EQUITY IN TERMS OF EXCELLENCE.

1702
00:59:51,240 --> 00:59:53,880
AND PLAN.

1703
00:59:53,880 --> 00:59:59,640
>>TO DO A BLIND REVIEW IN
AN

1704
00:59:59,640 --> 01:00:01,080
EXPERIMENT, THEY DID -- LOUISE

1705
01:00:01,080 --> 01:00:02,000
IS SHAKING HER HEAD.

1706
01:00:02,000 --> 01:00:05,760
>>I DID THAT BLIND REVIEW
AS A

1707
01:00:05,760 --> 01:00:07,600
PILOT, AND IT WAS INCREDIBLY

1708
01:00:07,600 --> 01:00:08,280
DIFFICULT.

1709
01:00:08,280 --> 01:00:10,600
SO YOU KNOW, WE WERE GIVEN 10

1710
01:00:10,600 --> 01:00:11,520
GRANTS OR WHATEVER AND IT WAS

1711
01:00:11,520 --> 01:00:13,880
ALL BLOCKED OUT, BUT IT REALLY

1712
01:00:13,880 --> 01:00:17,600
WAS DIFFICULT TO ASSESS THE

1713
01:00:17,600 --> 01:00:19,000
FEASIBILITY IF YOU DON'T HAVE

1714
01:00:19,000 --> 01:00:21,200
ANY EQUIPMENT, ANY RESOURCES,

1715
01:00:21,200 --> 01:00:22,560
ANY REFERENCE, YOU CAN TAKE OUT

1716
01:00:22,560 --> 01:00:24,760
THE INSTITUTION, BUT THEY EVEN

1717
01:00:24,760 --> 01:00:27,600
BLINDED THE BIO SKETCHES,

1718
01:00:27,600 --> 01:00:28,360
INCLUDING THE PAPERS.

1719
01:00:28,360 --> 01:00:32,400
>>OF COURSE YOU NEED TO
KNOW IF

1720
01:00:32,400 --> 01:00:34,080
THEY HAVE THE EQUIPMENT TO DO SO

1721
01:00:34,080 --> 01:00:35,560
THAT WOULD BE SOMETHING I

1722
01:00:35,560 --> 01:00:37,040
WOULDN'T SUGGEST TO TAKE OUT AND

1723
01:00:37,040 --> 01:00:40,000
MAKE BLIND, BUT YEAH, YOU'D NEED

1724
01:00:40,000 --> 01:00:41,080
SQUARE FOOTAGE AND YOU NEED --

1725
01:00:41,080 --> 01:00:43,240
>>YEP, BUT EVEN THE BIO

1726
01:00:43,240 --> 01:00:44,680
SKETCHES WERE BLINDED SO YOU

1727
01:00:44,680 --> 01:00:46,960
COULDN'T EVEN REALLY

1728
01:00:46,960 --> 01:00:48,160
DETERMINE -- INCLUDING ALL THEIR

1729
01:00:48,160 --> 01:00:48,760
PAPERS.

1730
01:00:48,760 --> 01:00:49,720
BECAUSE THEY HAD THEIR NAMES IN

1731
01:00:49,720 --> 01:00:50,400
THEM.

1732
01:00:50,400 --> 01:00:51,840
SO I MEAN, I THINK THERE'S A

1733
01:00:51,840 --> 01:00:54,400
SMARTER WAY TO DO IT THAN

1734
01:00:54,400 --> 01:00:55,160
BLINDING COMPLETELY BECAUSE THEN

1735
01:00:55,160 --> 01:00:58,560
IT JUST MAKES IT VERY HARD TO

1736
01:00:58,560 --> 01:01:00,120
JUDGE THE FEASIBILITY AND

1737
01:01:00,120 --> 01:01:01,360
PRODUCTIVITY OF THE

1738
01:01:01,360 --> 01:01:02,240
INVESTIGATOR, AND THOSE SHOULD

1739
01:01:02,240 --> 01:01:05,200
FACTOR IN A LITTLE.

1740
01:01:05,200 --> 01:01:06,800
>>MAYBE THOSE CAN FACTOR
IN

1741
01:01:06,800 --> 01:01:09,360
AFTER THE SCORE OF THE ACTUAL

1742
01:01:09,360 --> 01:01:11,280
SCIENCE HAS BEEN DONE.

1743
01:01:11,280 --> 01:01:15,320
MAYBE DURING THE DISCUSSION OF

1744
01:01:15,320 --> 01:01:16,560
THE -- ANYWAY, IT SEEMS LIKE

1745
01:01:16,560 --> 01:01:18,320
THERE ARE WAYS TO DO IT AND

1746
01:01:18,320 --> 01:01:20,120
THERE ARE PEOPLE WHO STUDY THIS

1747
01:01:20,120 --> 01:01:21,880
FULL TIME.

1748
01:01:21,880 --> 01:01:23,280
AND I THINK WE SHOULD GIVE IT

1749
01:01:23,280 --> 01:01:25,600
ANOTHER TRY MAYBE.

1750
01:01:25,600 --> 01:01:28,120
>>OKAY, LOUISE, CORRECT
ME IF

1751
01:01:28,120 --> 01:01:29,480
I'M WRONG, BUT THE REPORT I

1752
01:01:29,480 --> 01:01:31,080
HEARD, THEY DID THIS BLINDED

1753
01:01:31,080 --> 01:01:33,800
REVIEW, AND THEN THEY UNBLINDED

1754
01:01:33,800 --> 01:01:36,080
TO SEE WHERE THE PEOPLE CAME

1755
01:01:36,080 --> 01:01:37,840
FROM, WHAT THEIR REPUTATION WAS,

1756
01:01:37,840 --> 01:01:41,000
AND THEY LOOKED AT IT BY RACE

1757
01:01:41,000 --> 01:01:42,520
AND ETHNICITY, AND AFRICAN

1758
01:01:42,520 --> 01:01:46,240
AMERICANS WAS NO CHANGE, BLINDED

1759
01:01:46,240 --> 01:01:48,840
OR UNBLINDED.

1760
01:01:48,840 --> 01:01:49,880
CAUCASIANS WENT UP ABOUT

1761
01:01:49,880 --> 01:01:51,560
2 POINTS IN THEIR SCORE, WHEN

1762
01:01:51,560 --> 01:01:53,120
THEY WENT FROM UNBLINDED TO

1763
01:01:53,120 --> 01:01:53,360
BLINDED.

1764
01:01:53,360 --> 01:01:55,200
>>AGAIN, IT DEPENDS ON --
THE

1765
01:01:55,200 --> 01:01:56,720
DEVIL IS IN THE DETAILS.

1766
01:01:56,720 --> 01:01:57,880
IT DEPENDS ON HOW IT'S DONE.

1767
01:01:57,880 --> 01:01:59,040
>>I AGREE, GINA.

1768
01:01:59,040 --> 01:02:00,240
WE'VE BEEN TALKING ABOUT THIS AT

1769
01:02:00,240 --> 01:02:02,280
THE AHA, AS WALTER HEARD A

1770
01:02:02,280 --> 01:02:03,960
COUPLE WEEKS AGO, ABOUT DO WE DO

1771
01:02:03,960 --> 01:02:06,280
A BLINDED LIKE LETTER OF INTENT

1772
01:02:06,280 --> 01:02:06,560
STAGE.

1773
01:02:06,560 --> 01:02:07,840
SO WE'RE GOING TO PILOT THAT

1774
01:02:07,840 --> 01:02:09,800
OUT, HAVE A BLINDED LETTER OF

1775
01:02:09,800 --> 01:02:12,000
INTENT, AND THEN YOU GET THE

1776
01:02:12,000 --> 01:02:13,320
INFORMATION YOU NEED BECAUSE I

1777
01:02:13,320 --> 01:02:17,240
MEAN, IT IS IMPORTANT TO

1778
01:02:17,240 --> 01:02:18,920
SCORE -- TO SEE IF SOMEBODY IS

1779
01:02:18,920 --> 01:02:20,200
10 YEARS INTO THEIR RESEARCH

1780
01:02:20,200 --> 01:02:21,640
PROGRAM AND HASN'T PUBLISHED ANY

1781
01:02:21,640 --> 01:02:23,280
PAPERS, THAT'S NOT, YOU KNOW,

1782
01:02:23,280 --> 01:02:23,480
GREAT.

1783
01:02:23,480 --> 01:02:25,600
SO IT WAS JUST BASICALLY A WALL

1784
01:02:25,600 --> 01:02:27,880
ON THE BIOSKETCH OF BLACKED OUT

1785
01:02:27,880 --> 01:02:29,520
STUFF, AND WALTER NOTES, IT

1786
01:02:29,520 --> 01:02:30,640
DIDN'T MAKE ANY DIFFERENCE AT

1787
01:02:30,640 --> 01:02:31,920
ALL FOR THE THINGS WE WERE

1788
01:02:31,920 --> 01:02:32,560
TRYING TO ACHIEVE.

1789
01:02:32,560 --> 01:02:33,720
>>RIGHT.

1790
01:02:33,720 --> 01:02:33,920
OKAY.

1791
01:02:33,920 --> 01:02:37,000
>>BY THE WAY, CSR HAS
DONE THE

1792
01:02:37,000 --> 01:02:38,080
EXPERIMENT, EXACTLY THE

1793
01:02:38,080 --> 01:02:39,600
EXPERIMENT YOU PROPOSED, GINA,

1794
01:02:39,600 --> 01:02:40,920
FACTORING IN THE INVESTIGATOR

1795
01:02:40,920 --> 01:02:42,640
AFTER REVIEW.

1796
01:02:42,640 --> 01:02:43,480
THAT HAS BEEN DONE.

1797
01:02:43,480 --> 01:02:44,600
I'M NOT EXACTLY SURE WHAT THEY

1798
01:02:44,600 --> 01:02:45,200
LEARNED.

1799
01:02:45,200 --> 01:02:46,800
I KNOW ERNIE FROM OUR REVIEW

1800
01:02:46,800 --> 01:02:47,800
BRANCH KNOWS ABOUT THAT.

1801
01:02:47,800 --> 01:02:48,920
I DON'T KNOW IF HE KNOWS WHAT

1802
01:02:48,920 --> 01:02:52,120
THE RESULT WAS OR IF HE CAN GET

1803
01:02:52,120 --> 01:02:54,640
ON, BUT IN ANY CASE.

1804
01:02:54,640 --> 01:02:57,080
THIS PROBLEM IS BEING THOUGHT

1805
01:02:57,080 --> 01:02:58,760
ABOUT INTENSELY AT CSR AND IN

1806
01:02:58,760 --> 01:03:00,080
OUR OWN REVIEW BRANCH.

1807
01:03:00,080 --> 01:03:03,440
IT'S A BIG DEAL.

1808
01:03:03,440 --> 01:03:04,640
WAS THERE ANOTHER HAND UP?

1809
01:03:04,640 --> 01:03:05,360
NO, I GUESS NOT.

1810
01:03:05,360 --> 01:03:07,040
>>I HAD TWO MORE THINGS,

1811
01:03:07,040 --> 01:03:07,280
THOUGH.

1812
01:03:07,280 --> 01:03:07,880
>>OH.

1813
01:03:07,880 --> 01:03:08,440
KEEP GOING.

1814
01:03:08,440 --> 01:03:08,880
KEEP GOING.

1815
01:03:08,880 --> 01:03:09,440
>>OKAY.

1816
01:03:09,440 --> 01:03:10,960
ONE WAS ABOUT DATA SHARING.

1817
01:03:10,960 --> 01:03:12,760
I THINK IT'S WONDERFUL WE'RE

1818
01:03:12,760 --> 01:03:14,440
ABOUT TO DO IT OR ARE ALREADY

1819
01:03:14,440 --> 01:03:17,400
DOING IT, AND INCREDIBLY

1820
01:03:17,400 --> 01:03:18,680
IMPORTANT.

1821
01:03:18,680 --> 01:03:20,600
I JUST WONDER IF WE HAVE ENOUGH

1822
01:03:20,600 --> 01:03:22,720
RESOURCES DEDICATED TO IT,

1823
01:03:22,720 --> 01:03:24,880
BECAUSE IT'S EXPENSIVE TO

1824
01:03:24,880 --> 01:03:28,360
CONVERT, YOU KNOW, AND WHAT

1825
01:03:28,360 --> 01:03:30,000
HAPPENS TO DATA THAT'S FIVE

1826
01:03:30,000 --> 01:03:31,520
YEARS OLD AND THE GRANT FOR IT

1827
01:03:31,520 --> 01:03:34,280
HAS NOW ENDED, AND WE'VE

1828
01:03:34,280 --> 01:03:37,520
CONVERTED TO A NEW FORMAT FOR

1829
01:03:37,520 --> 01:03:40,040
EVERYBODY TO LOOK AT DATA AND

1830
01:03:40,040 --> 01:03:42,120
CDs ARE NO LONGER -- NOBODY

1831
01:03:42,120 --> 01:03:44,280
HAS A CD PLAYER OR, YOU KNOW,

1832
01:03:44,280 --> 01:03:45,160
MAGNETIC TAPES OR WHATEVER.

1833
01:03:45,160 --> 01:03:47,440
ALL OF THESE DATA THAT ARE FROM

1834
01:03:47,440 --> 01:03:48,960
PAST GRANTS, THEY'RE STILL

1835
01:03:48,960 --> 01:03:49,960
EXTREMELY VALUABLE AND

1836
01:03:49,960 --> 01:03:51,360
ESPECIALLY AS SCIENCE ADVANCES

1837
01:03:51,360 --> 01:03:53,000
AND WE KNOW NOW WHAT TO LOOK FOR

1838
01:03:53,000 --> 01:03:56,240
THAT WE DIDN'T KNOW FROM BEFORE,

1839
01:03:56,240 --> 01:03:58,640
THE DATA THAT ARE OUT THERE AND

1840
01:03:58,640 --> 01:04:01,920
ARE FESTERING AND ROTTING IN

1841
01:04:01,920 --> 01:04:03,680
BASEMENTS SOMEWHERE OR BEING

1842
01:04:03,680 --> 01:04:07,360
THROWN OUT, IT'S JUST -- IT'S

1843
01:04:07,360 --> 01:04:08,320
INCREDIBLY EXPENSIVE TO RE-DO

1844
01:04:08,320 --> 01:04:11,600
ALL OF THESE STUDIES INSTEAD OF

1845
01:04:11,600 --> 01:04:14,880
JUST, YOU KNOW, PUTTING INTO

1846
01:04:14,880 --> 01:04:16,160
OPEN SOURCE ALL OF THIS DATA

1847
01:04:16,160 --> 01:04:17,360
THAT ARE ALREADY OUT THERE.

1848
01:04:17,360 --> 01:04:20,200
IT KILLS ME TO SEE, YOU KNOW, A

1849
01:04:20,200 --> 01:04:22,920
THOUSAND INFANT STUDIES FROM

1850
01:04:22,920 --> 01:04:27,400
1970 AND 1980 THROWN AWAY RATHER

1851
01:04:27,400 --> 01:04:29,160
THAN JUST MADE AVAILABLE.

1852
01:04:29,160 --> 01:04:30,880
SO WHAT ARE WE DOING FOR THAT?

1853
01:04:30,880 --> 01:04:35,920
OR WHAT COULD WE DO?

1854
01:04:35,920 --> 01:04:38,640
>>OKAY, SO I'M NOT AN
EXPERT

1855
01:04:38,640 --> 01:04:40,680
HERE, BUT MY UNDERSTANDING WAS

1856
01:04:40,680 --> 01:04:43,240
THAT THIS DATA WILL NOW BE ON

1857
01:04:43,240 --> 01:04:48,760
OUR WEBSITE SOMEWHERE WITH A

1858
01:04:48,760 --> 01:04:50,160
LINK THAT WILL BE IN THE

1859
01:04:50,160 --> 01:04:50,480
PUBLICATION.

1860
01:04:50,480 --> 01:04:51,520
>>THAT'S WONDERFUL.

1861
01:04:51,520 --> 01:04:52,040
THAT'S GREAT.

1862
01:04:52,040 --> 01:04:53,200
FROM HERE ON OUT, THAT'S GREAT.

1863
01:04:53,200 --> 01:04:55,080
BUT I WAS JUST WONDERING IF WE

1864
01:04:55,080 --> 01:04:57,160
CAN HAVE AN INITIATIVE TO SAVE

1865
01:04:57,160 --> 01:05:00,200
OLD DATA.

1866
01:05:00,200 --> 01:05:01,280
INCLUDING LAB NOTEBOOKS AND ALL

1867
01:05:01,280 --> 01:05:02,040
OF THAT.

1868
01:05:02,040 --> 01:05:05,640
AND ALSO, I GUESS MAYBE BETTER

1869
01:05:05,640 --> 01:05:08,760
GUIDANCE FROM THE NIH ABOUT

1870
01:05:08,760 --> 01:05:09,800
WHERE THOSE DATA SHOULD BE

1871
01:05:09,800 --> 01:05:10,240
STORED.

1872
01:05:10,240 --> 01:05:11,760
IF IT'S ON A COMMERCIAL SITE,

1873
01:05:11,760 --> 01:05:13,720
THAT COULD GO DOWN AT ANY

1874
01:05:13,720 --> 01:05:15,880
MINUTE, THEN IT'S DONE.

1875
01:05:15,880 --> 01:05:18,080
YOU KNOW, MAYBE THE NIH NEEDS TO

1876
01:05:18,080 --> 01:05:22,720
INVEST IN ITS OWN DATA FARM

1877
01:05:22,720 --> 01:05:24,080
STORAGE OR SOMETHING, SOMETHING

1878
01:05:24,080 --> 01:05:25,920
THAT'S LASTING.

1879
01:05:25,920 --> 01:05:27,440
JANE'S GOT SOME THINGS TO SAY

1880
01:05:27,440 --> 01:05:27,760
ABOUT THAT.

1881
01:05:27,760 --> 01:05:29,800
>>YEAH, BUT I'LL JUST SAY
ABOUT

1882
01:05:29,800 --> 01:05:30,920
DATA SHARING, HAVING SPENT A

1883
01:05:30,920 --> 01:05:32,440
GOOD DEAL OF MY TIME ON THAT

1884
01:05:32,440 --> 01:05:33,720
TOPIC, THE CHALLENGE WITH

1885
01:05:33,720 --> 01:05:35,600
SHARING ALL THE DATA CAN BE

1886
01:05:35,600 --> 01:05:36,560
REALLY HARD TO INTERPRET.

1887
01:05:36,560 --> 01:05:38,240
IF YOU JUST FIND SOMEBODY'S LAB

1888
01:05:38,240 --> 01:05:39,400
NOTEBOOK AND JUST TRY TO

1889
01:05:39,400 --> 01:05:41,240
UNDERSTAND WHAT THEIR DATA

1890
01:05:41,240 --> 01:05:43,000
MEANT, WHAT CONTEXT IT WAS

1891
01:05:43,000 --> 01:05:44,640
COLLECTED, THERE IS SO MUCH

1892
01:05:44,640 --> 01:05:45,280
INFORMATION LOST.

1893
01:05:45,280 --> 01:05:46,680
SO SOMEHOW AS WE SHARE DATA, YOU

1894
01:05:46,680 --> 01:05:48,880
NEED TO KEEP ALL OF THAT

1895
01:05:48,880 --> 01:05:51,320
METADATA ALONG WITH IT SO PEOPLE

1896
01:05:51,320 --> 01:05:53,040
CAN UNDERSTAND, MAKE SENSE OUT

1897
01:05:53,040 --> 01:05:54,080
OF WHAT WAS DONE, BECAUSE

1898
01:05:54,080 --> 01:05:56,800
SOMETIMES IT'S WORTH REDOING AN

1899
01:05:56,800 --> 01:05:58,320
EXPERIMENT WITH IN TECHNOLOGY,

1900
01:05:58,320 --> 01:05:59,520
WE ALL KNOW THIS.

1901
01:05:59,520 --> 01:06:00,160
SO THAT'S ONE THING.

1902
01:06:00,160 --> 01:06:02,160
THE OTHER THING IS WITH SHARING

1903
01:06:02,160 --> 01:06:04,000
DATA, IT'S ALL VERY WELL TO KEEP

1904
01:06:04,000 --> 01:06:05,840
IT BUT KEEPING WHAT THEY CALL

1905
01:06:05,840 --> 01:06:07,040
FAIR PRINCIPLES, MAKING IT

1906
01:06:07,040 --> 01:06:07,960
ACCESSIBLE AND USABLE AT THE

1907
01:06:07,960 --> 01:06:09,320
OTHER END, WHICH IS A WHOLE AREA

1908
01:06:09,320 --> 01:06:10,520
OF DATA SCIENCE AND ACTUALLY

1909
01:06:10,520 --> 01:06:11,920
BEING ABLE TO FIND THAT DATA,

1910
01:06:11,920 --> 01:06:14,640
USE THAT DATA AND INTERPRET THAT

1911
01:06:14,640 --> 01:06:14,960
DATA.

1912
01:06:14,960 --> 01:06:17,280
I CAN GO ON FOR HOURS BUT I

1913
01:06:17,280 --> 01:06:18,160
WON'T BECAUSE I'M SURE NOBODY

1914
01:06:18,160 --> 01:06:19,680
WANTS THAT BUT IT'S A REALLY

1915
01:06:19,680 --> 01:06:20,520
IMPORTANT AREA TO THINK ABOUT,

1916
01:06:20,520 --> 01:06:22,040
BECAUSE AS YOU SAY, WE DON'T

1917
01:06:22,040 --> 01:06:23,120
WANT TO LOSE THAT INFORMATION

1918
01:06:23,120 --> 01:06:26,160
BUT WE DO WANT TO SHARE IT IN A

1919
01:06:26,160 --> 01:06:27,920
THOUGHTFUL WAY WHERE PEOPLE CAN

1920
01:06:27,920 --> 01:06:29,040
ACTUALLY ACCESS IT AND USE IT.

1921
01:06:29,040 --> 01:06:29,760
>>ABSOLUTELY.

1922
01:06:29,760 --> 01:06:31,600
THANK YOU SO MUCH, JANE.

1923
01:06:31,600 --> 01:06:33,680
I WANTED TO MAKE A PLUG, MAYBE

1924
01:06:33,680 --> 01:06:35,160
HANK PAULSON CAN CHIME HERE,

1925
01:06:35,160 --> 01:06:35,760
UNIVERSITY OF MICHIGAN HAS

1926
01:06:35,760 --> 01:06:37,040
SOMETHING CALLED DEEP BLUE.

1927
01:06:37,040 --> 01:06:38,920
IT MIGHT NOT BE THE ONLY ONE,

1928
01:06:38,920 --> 01:06:40,760
BUT IT'S GOT A GREAT WAY YOU CAN

1929
01:06:40,760 --> 01:06:42,640
REPOSIT YOUR DATA AND YOU FILL

1930
01:06:42,640 --> 01:06:46,960
OUT A FORM AND IT'S VERY GENERIC

1931
01:06:46,960 --> 01:06:49,800
AND STANDARDIZED SO THAT ANYBODY

1932
01:06:49,800 --> 01:06:50,480
CAN ACCESS IT.

1933
01:06:50,480 --> 01:06:51,800
HANK, DO YOU WANT TO UNMUTE?

1934
01:06:51,800 --> 01:06:54,360
>>I AGREE WITH YOU THAT
--

1935
01:06:54,360 --> 01:06:55,680
ACTUALLY I THINK THAT

1936
01:06:55,680 --> 01:06:58,720
UNIVERSITIES LIKE MICHIGAN,

1937
01:06:58,720 --> 01:07:00,320
WHICH HAVE DEEP POCKETS IN THIS

1938
01:07:00,320 --> 01:07:01,480
AREA AND EXPERIENCE, I THINK ARE

1939
01:07:01,480 --> 01:07:03,200
WELL EQUIPPED TO HELP

1940
01:07:03,200 --> 01:07:06,080
INVESTIGATORS PLACE THEIR DATA

1941
01:07:06,080 --> 01:07:07,480
IN AN ACADEMIC ENVIRONMENT WHERE

1942
01:07:07,480 --> 01:07:09,120
IT'S RELATIVELY CHEAP AND

1943
01:07:09,120 --> 01:07:09,800
RELATIVELY ACCESSIBLE.

1944
01:07:09,800 --> 01:07:10,360
THAT'S IMPORTANT.

1945
01:07:10,360 --> 01:07:14,160
BUT I ALSO SECOND YOUR POINT

1946
01:07:14,160 --> 01:07:15,640
ABOUT GINA, NIH AND NINDS MAKING

1947
01:07:15,640 --> 01:07:16,320
A COMMITMENT TO THIS, BECAUSE

1948
01:07:16,320 --> 01:07:17,640
THIS IS GOING TO BE A NIGHTMARE

1949
01:07:17,640 --> 01:07:20,040
IN TERMS OF COST AND

1950
01:07:20,040 --> 01:07:23,120
MAINTENANCE.

1951
01:07:23,120 --> 01:07:26,480
>>THE HEAD OF OUR
DIVISION OF

1952
01:07:26,480 --> 01:07:27,240
NEUROSCIENCE, LYN JAKEMAN, HAS

1953
01:07:27,240 --> 01:07:28,480
REALLY TAKEN THIS CAUSE ON.

1954
01:07:28,480 --> 01:07:29,840
WE HAVE AN INTERNAL WORKING

1955
01:07:29,840 --> 01:07:31,800
GROUP LOOKING AT THIS REALLY

1956
01:07:31,800 --> 01:07:32,120
INTENSELY.

1957
01:07:32,120 --> 01:07:33,160
GOING BACK TO THE LAST THING

1958
01:07:33,160 --> 01:07:34,240
WITH BLINDING PEER REVIEW, IF

1959
01:07:34,240 --> 01:07:35,360
YOU WANT TO READ THE PAPER I WAS

1960
01:07:35,360 --> 01:07:38,320
TALKING ABOUT, IT WAS WRITTEN BY

1961
01:07:38,320 --> 01:07:42,960
RICHARD NAKAMORA.

1962
01:07:42,960 --> 01:07:45,000
USED TO BE THE HEAD OF CSR.

1963
01:07:45,000 --> 01:07:46,600
THE LAST AUTHOR IS BRUCE REID,

1964
01:07:46,600 --> 01:07:48,600
NOW DEPUTY DIRECTOR OF CSR.

1965
01:07:48,600 --> 01:07:51,640
THE BOTTOM LINE IN THEIR

1966
01:07:51,640 --> 01:07:54,240
BLINDING EXPERIMENTS, THAT IT

1967
01:07:54,240 --> 01:07:58,520
REDUCED THE REVIEWER'S ABILITY

1968
01:07:58,520 --> 01:08:00,680
TO GUESS THE IDENTITY OF THE

1969
01:08:00,680 --> 01:08:02,440
P.I. BUT IT DIDN'T ELIMINATE IT.

1970
01:08:02,440 --> 01:08:03,640
HOWEVER -- SO I'M GOING TO READ

1971
01:08:03,640 --> 01:08:04,800
QUICKLY FROM THE RESULTS --

1972
01:08:04,800 --> 01:08:05,960
STANDARD FORMAT APPLICATIONS --

1973
01:08:05,960 --> 01:08:09,440
THIS IS THE PREVIOUS, THE USUAL

1974
01:08:09,440 --> 01:08:10,520
FORMAT -- FROM WHITE

1975
01:08:10,520 --> 01:08:11,720
INVESTIGATORS SCORED BETTER THAN

1976
01:08:11,720 --> 01:08:13,160
BLACK INVESTIGATORS WERE

1977
01:08:13,160 --> 01:08:14,440
ACTUALLY CUT THE SIZE OF THE

1978
01:08:14,440 --> 01:08:16,320
DIFFERENCE BY ABOUT HALF IN

1979
01:08:16,320 --> 01:08:20,120
MATCHED APPLICATIONS.

1980
01:08:20,120 --> 01:08:21,520
APPLICATIONS FROM WHITE

1981
01:08:21,520 --> 01:08:22,720
SCIENTISTS TO SCORE WORSE BUT

1982
01:08:22,720 --> 01:08:24,400
HAD NO EFFECT AS WALTER I THINK

1983
01:08:24,400 --> 01:08:27,560
MENTIONED OR SCORES FOR BLACK

1984
01:08:27,560 --> 01:08:28,040
APPLICANTS.

1985
01:08:28,040 --> 01:08:29,760
SO THE PAPER IS IN ELIVE AND THE

1986
01:08:29,760 --> 01:08:33,960
FIRST AUTHOR IS RICHARD

1987
01:08:33,960 --> 01:08:34,480
NAKAMORA.

1988
01:08:34,480 --> 01:08:35,360
IT'S IN THE CHAT, I SEE.

1989
01:08:35,360 --> 01:08:36,600
>>THANK YOU, THANK YOU.

1990
01:08:36,600 --> 01:08:38,320
AND AGAIN, THAT WAS ONE

1991
01:08:38,320 --> 01:08:39,440
EXPERIMENT, MAYBE WE NEED TO DO

1992
01:08:39,440 --> 01:08:40,360
A FEW MORE.

1993
01:08:40,360 --> 01:08:41,600
>>ABSOLUTELY.

1994
01:08:41,600 --> 01:08:43,000
IT'S CRITICAL.

1995
01:08:43,000 --> 01:08:44,840
I MEAN, IT TWO THINGS.

1996
01:08:44,840 --> 01:08:46,440
FIRST THERE'S BUY A THEN THERE'S

1997
01:08:46,440 --> 01:08:48,000
THE ERROR BARS IN PEER REVIEW,

1998
01:08:48,000 --> 01:08:49,560
WHICH WE'VE ALSO ATTEMPTED.

1999
01:08:49,560 --> 01:08:51,080
TWO DIFFERENT STUDY SECTIONS

2000
01:08:51,080 --> 01:08:52,200
REVIEW THE SAME APPLICATION,

2001
01:08:52,200 --> 01:08:54,440
WHAT ARE THE ERROR BARS?

2002
01:08:54,440 --> 01:08:55,560
ANOTHER CRITICAL POINT.

2003
01:08:55,560 --> 01:08:56,040
OKAY.

2004
01:08:56,040 --> 01:08:57,480
ANY LAST QUESTIONS ABOUT

2005
01:08:57,480 --> 01:09:01,640
WALTER'S TALK?

2006
01:09:01,640 --> 01:09:03,840
>>EMAILS, ANY QUESTIONS,

2007
01:09:03,840 --> 01:09:09,480
SUGGESTIONS, PLEASE EMAIL ME.

2008
01:09:09,480 --> 01:09:10,600
>>OKAY.

2009
01:09:10,600 --> 01:09:13,520
WALTER, WE'RE SHIFTING INTO THE

2010
01:09:13,520 --> 01:09:14,840
HEAL SEGMENT, AND I THINK YOU

2011
01:09:14,840 --> 01:09:16,360
WERE GOING TO INTRODUCE MICHAEL

2012
01:09:16,360 --> 01:09:20,440
AND LINDA?

2013
01:09:20,440 --> 01:09:23,280
>>JUST TALKING ABOUT
STAFF AT

2014
01:09:23,280 --> 01:09:26,200
NIH, AND AT NINDS, AND THIS IS

2015
01:09:26,200 --> 01:09:29,840
JUST A GREAT EXAMPLE OF HOW OUR

2016
01:09:29,840 --> 01:09:31,280
STAFF COMPLETELY REVOLUTIONIZED

2017
01:09:31,280 --> 01:09:33,400
AN AREA OF SCIENCE, WHICH IS THE

2018
01:09:33,400 --> 01:09:34,680
PAIN SIDE OF SCIENCE.

2019
01:09:34,680 --> 01:09:36,480
AND SO YOU'RE GOING TO HEAR FROM

2020
01:09:36,480 --> 01:09:38,960
LINDA PORTER, WHO'S THE DIRECTOR

2021
01:09:38,960 --> 01:09:40,840
FOR THE NIH OFFICE OF PAIN

2022
01:09:40,840 --> 01:09:42,280
POLICY AND PLANNING, AND THE

2023
01:09:42,280 --> 01:09:44,520
CO-LEAD FOR THE HELPING END

2024
01:09:44,520 --> 01:09:45,480
ADDICTION LONG TERM CLINICAL

2025
01:09:45,480 --> 01:09:48,320
PAIN GROUP, AND MICHAEL

2026
01:09:48,320 --> 01:09:52,040
OSHINSKY, WHO IS THE HEAD OF OUR

2027
01:09:52,040 --> 01:09:54,360
TRANS-NIH PRE-CLINICAL PAIN

2028
01:09:54,360 --> 01:09:57,640
RESEARCH AND ALSO THE HEAD OF

2029
01:09:57,640 --> 01:10:00,920
THE HEAL TEAM OR THE

2030
01:10:00,920 --> 01:10:02,200
PRE-CLINICAL PAIN RESEARCH, AND

2031
01:10:02,200 --> 01:10:04,760
WE ARE FUNDING FOR PAIN THROUGH

2032
01:10:04,760 --> 01:10:08,440
THE HEAL INITIATIVE, IT'S NOW

2033
01:10:08,440 --> 01:10:11,080
$280 MILLION A YEAR, WHICH HAS

2034
01:10:11,080 --> 01:10:12,400
ALLOWED THINGS TO BE DONE THAT

2035
01:10:12,400 --> 01:10:14,800
YOU COULD NEVER HAVE IMAGINED.

2036
01:10:14,800 --> 01:10:16,120
AND IT WAS JUST -- WE WERE

2037
01:10:16,120 --> 01:10:16,640
PREPARED.

2038
01:10:16,640 --> 01:10:18,600
WE HAD REALLY GOOD PEOPLE, THEY

2039
01:10:18,600 --> 01:10:20,040
WERE REALLY KNOWLEDGEABLE, AND

2040
01:10:20,040 --> 01:10:21,440
THEN, YOU KNOW, THIS THING FELL

2041
01:10:21,440 --> 01:10:22,640
OUT OF THE SKY AND WE WERE ABLE

2042
01:10:22,640 --> 01:10:24,600
TO TAKE ADVANTAGE OF IT.

2043
01:10:24,600 --> 01:10:28,560
SO EACH YEAR, THEY'LL GIVE A

2044
01:10:28,560 --> 01:10:29,160
PRESENTATION, SUMMARY OF WHAT

2045
01:10:29,160 --> 01:10:31,920
WENT ON IN THE LAST YEAR.

2046
01:10:31,920 --> 01:10:34,240
AND SO LET ME HAND OFF TO LINDA

2047
01:10:34,240 --> 01:10:36,720
AND MICHAEL.

2048
01:10:36,720 --> 01:10:40,760
>>THANK YOU, WALTER.

2049
01:10:40,760 --> 01:10:46,560
CAN WE HAVE THE SLIDES UP?

2050
01:10:46,560 --> 01:10:48,160
SO LINDA AND I ARE GOING TO BE

2051
01:10:48,160 --> 01:10:48,960
SPEAKING ON THE NIH HEAL

2052
01:10:48,960 --> 01:10:50,160
INITIATIVE AND SOME OF THE

2053
01:10:50,160 --> 01:10:51,360
ACCOMPLISHMENTS WE'VE HAD IN THE

2054
01:10:51,360 --> 01:10:54,840
LAST FISCAL YEAR.

2055
01:10:54,840 --> 01:10:58,240
AND WE THANK THE NINDS COUNCIL

2056
01:10:58,240 --> 01:11:01,120
FOR THE OPPORTUNITY TO SHOW YOU

2057
01:11:01,120 --> 01:11:03,360
SOME OF THESE ACCOMPLISHMENTS

2058
01:11:03,360 --> 01:11:04,720
AND TO GET YOUR FEEDBACK ON

2059
01:11:04,720 --> 01:11:06,600
THESE PROGRAMS AND SUGGESTIONS

2060
01:11:06,600 --> 01:11:07,880
FOR HOW TO MAKE THEM BETTER AND

2061
01:11:07,880 --> 01:11:09,720
HOW TO FILL SOME OF THE GAPS

2062
01:11:09,720 --> 01:11:14,960
THAT STILL EXIST.

2063
01:11:14,960 --> 01:11:16,920
SOG THE NIH HEAL INITIATIVE,

2064
01:11:16,920 --> 01:11:22,480
HELPING TO END ADDICTION LONG

2065
01:11:22,480 --> 01:11:24,480
TERM'S GOAL IS TO REALLY USE

2066
01:11:24,480 --> 01:11:25,920
SCIENCE AND DATA TO ADDRESS THE

2067
01:11:25,920 --> 01:11:26,880
OPIOID EPIDEMIC.

2068
01:11:26,880 --> 01:11:29,480
BUT NOT JUST THE OPIOID

2069
01:11:29,480 --> 01:11:32,640
EPIDEMIC, BUT ALSO THE EPIDEMIC

2070
01:11:32,640 --> 01:11:35,480
OF PAIN.

2071
01:11:35,480 --> 01:11:40,280
IN ORDER TO ADDRESS THOSE TWO

2072
01:11:40,280 --> 01:11:42,240
DIFFERENT ASPECTS OF THESE

2073
01:11:42,240 --> 01:11:44,240
EPIDEMICS, MEANING OPIOID

2074
01:11:44,240 --> 01:11:48,920
OVERUSE DISORDER AND OF THE PAIN

2075
01:11:48,920 --> 01:11:49,680
EPIDEMIC, WE'VE BROKEN UP INTO

2076
01:11:49,680 --> 01:11:50,680
DIFFERENT TEAMS.

2077
01:11:50,680 --> 01:11:54,400
I'M GOING TO BE PRESENTING THE

2078
01:11:54,400 --> 01:11:57,440
PRE-CLINICAL AND TRANSLATIONAL

2079
01:11:57,440 --> 01:12:00,160
TEAMS' EFFORT TO ENHANCE PAIN

2080
01:12:00,160 --> 01:12:00,520
MANAGEMENT.

2081
01:12:00,520 --> 01:12:01,920
YOU CAN SEE HERE ON THE SLIDE

2082
01:12:01,920 --> 01:12:03,680
SEVERAL OF THE GOALS THAT WE USE

2083
01:12:03,680 --> 01:12:07,360
AS GUIDING PRINCIPLES WHEN WE

2084
01:12:07,360 --> 01:12:09,800
DEVELOP OUR FUNDING INITIATIVES

2085
01:12:09,800 --> 01:12:12,520
AND MAKE FUNDING DECISIONS.

2086
01:12:12,520 --> 01:12:14,040
NOW THESE GOALS CAME FROM A

2087
01:12:14,040 --> 01:12:15,800
SERIES OF MEETINGS THAT HAPPENED

2088
01:12:15,800 --> 01:12:19,920
IN THE SUMMER OF 2017.

2089
01:12:19,920 --> 01:12:22,840
WHERE WE SPOKE TO STAKEHOLDERS,

2090
01:12:22,840 --> 01:12:24,680
CLINICIANS, SCIENTISTS, AND

2091
01:12:24,680 --> 01:12:28,680
COMPANIES INVOLVED IN THIS

2092
01:12:28,680 --> 01:12:31,280
SPACE, MEANING OUD AND

2093
01:12:31,280 --> 01:12:32,480
THERAPEUTICS DEVELOPMENT, AND

2094
01:12:32,480 --> 01:12:34,200
ASKED THEM WHERE ARE THE GAPS,

2095
01:12:34,200 --> 01:12:35,880
WHAT'S NEEDED IN ORDER TO FILL

2096
01:12:35,880 --> 01:12:41,440
THOSE GAPS, AND REALLY TO

2097
01:12:41,440 --> 01:12:42,360
ACCELERATE GETTING NEW

2098
01:12:42,360 --> 01:12:43,400
TREATMENTS INTO THE HANDS OF

2099
01:12:43,400 --> 01:12:44,440
PHYSICIANS AND PATIENTS SO THAT

2100
01:12:44,440 --> 01:12:47,760
WE CAN CHANGE THEIR LIVES AND

2101
01:12:47,760 --> 01:12:49,160
ADDRESS THE SEVERITY OF THIS

2102
01:12:49,160 --> 01:12:50,040
EPIDEMIC.

2103
01:12:50,040 --> 01:12:51,720
SO I'M GOING TO FOCUS ON THE

2104
01:12:51,720 --> 01:12:54,320
PROGRAMS THAT ARE FOCUSED ON

2105
01:12:54,320 --> 01:12:56,040
UNDERSTANDING THE BIOLOGICAL

2106
01:12:56,040 --> 01:12:57,160
UNDERPINNINGS OF CHRONIC PAIN

2107
01:12:57,160 --> 01:13:00,000
AND MORE IMPORTANTLY,

2108
01:13:00,000 --> 01:13:01,080
ACCELERATING DISCOVERY AND

2109
01:13:01,080 --> 01:13:02,200
PRE-CLINICAL DEVELOPMENT OF

2110
01:13:02,200 --> 01:13:03,600
THESE PAIN TREATMENTS THAT HAVE

2111
01:13:03,600 --> 01:13:06,240
LITTLE OR NO ADDICTION

2112
01:13:06,240 --> 01:13:07,680
LIABILITY.

2113
01:13:07,680 --> 01:13:11,080
NEXT SLIDE.

2114
01:13:11,080 --> 01:13:12,600
SO THIS CHEVRON DIAGRAM, IF YOU

2115
01:13:12,600 --> 01:13:14,200
LOOK AT THE TOP, GOING FROM

2116
01:13:14,200 --> 01:13:15,640
DISCOVERY THROUGH PRE-CLINICAL

2117
01:13:15,640 --> 01:13:17,400
DEVELOPMENT AND THEN THE INITIAL

2118
01:13:17,400 --> 01:13:18,720
CLINICAL TRIALS AND THEN, OF

2119
01:13:18,720 --> 01:13:19,920
COURSE, DISSEMINATION OF THAT

2120
01:13:19,920 --> 01:13:22,080
RESEARCH IS REALLY A SUMMARY OF

2121
01:13:22,080 --> 01:13:23,840
THE DIFFERENT CATEGORIES THAT

2122
01:13:23,840 --> 01:13:25,360
THESE FUNDING ANNOUNCEMENTS OR

2123
01:13:25,360 --> 01:13:28,000
THESE INITIATIVES CAN FALL INTO.

2124
01:13:28,000 --> 01:13:31,040
THE ONES THAT ARE IN M MAGENTA,

2125
01:13:31,040 --> 01:13:34,440
THESE 12 THAT ARE LISTED HERE,

2126
01:13:34,440 --> 01:13:36,400
REPRESENT THE ONES THAT ARE IN

2127
01:13:36,400 --> 01:13:38,120
THE PRE-CLINICAL AND

2128
01:13:38,120 --> 01:13:41,960
TRANSLATIONAL PAIN WORK GROUP.

2129
01:13:41,960 --> 01:13:45,480
AND THEY SPAN THE RANGE OF

2130
01:13:45,480 --> 01:13:48,160
THERAPEUTICS DEVELOPMENT FROM

2131
01:13:48,160 --> 01:13:49,480
DISCOVERY THROUGH THE INITIAL

2132
01:13:49,480 --> 01:13:50,600
CLINICAL TRIALS.

2133
01:13:50,600 --> 01:13:51,680
AND THEN LINDA WILL BE

2134
01:13:51,680 --> 01:13:53,320
DISCUSSING THE OTHER PROGRAMS

2135
01:13:53,320 --> 01:13:57,680
THAT ARE LISTED HERE IN GREY.

2136
01:13:57,680 --> 01:13:59,440
NOW, IF YOU START FROM THE TOP,

2137
01:13:59,440 --> 01:14:02,160
YOU CAN SEE THAT THERE'S A

2138
01:14:02,160 --> 01:14:03,280
PROGRESSION FROM TARGET

2139
01:14:03,280 --> 01:14:04,560
DISCOVERY AND VALIDATION OF

2140
01:14:04,560 --> 01:14:07,280
THOSE TARGETS THROUGH INITIAL

2141
01:14:07,280 --> 01:14:08,480
ANALGESIC DEVELOPMENT, AND THEN

2142
01:14:08,480 --> 01:14:10,240
A PAIN THERAPEUTICS DEVELOPMENT

2143
01:14:10,240 --> 01:14:13,600
PROGRAM WHICH CAN BRING A TEAM

2144
01:14:13,600 --> 01:14:15,800
TO THEIR PHASE ONE AND THEIR

2145
01:14:15,800 --> 01:14:17,560
INITIAL CLINICAL TRIALS.

2146
01:14:17,560 --> 01:14:18,880
NOW, EVEN THOUGH THE PROGRAMS

2147
01:14:18,880 --> 01:14:21,160
ARE DESIGNED FOR TAKING A

2148
01:14:21,160 --> 01:14:25,760
PROGRAM ALONG THIS PATH, THEY'RE

2149
01:14:25,760 --> 01:14:29,360
ALSO DESIGNED TO TAKE IN ASSETS

2150
01:14:29,360 --> 01:14:31,240
OR IDEAS AT ANY PARTICULAR

2151
01:14:31,240 --> 01:14:31,560
STAGE.

2152
01:14:31,560 --> 01:14:32,840
SO THERE'S NO REQUIREMENT THEY

2153
01:14:32,840 --> 01:14:34,160
GO IN IN THIS PARTICULAR ORDER.

2154
01:14:34,160 --> 01:14:36,880
WE ALSO HAVE PROGRAMS SUCH AS

2155
01:14:36,880 --> 01:14:38,440
THE PRE-CLINICAL SCREENING

2156
01:14:38,440 --> 01:14:40,480
PLATFORM FOR PAIN, THE PSPP

2157
01:14:40,480 --> 01:14:44,400
PROGRAM, WHERE WE PROVIDE A

2158
01:14:44,400 --> 01:14:45,520
PROFILING PLATFORM FOR

2159
01:14:45,520 --> 01:14:46,920
INDIVIDUALS WHO MIGHT HAVE A

2160
01:14:46,920 --> 01:14:48,120
LATER STAGE ASSET AND HELPING

2161
01:14:48,120 --> 01:14:50,760
THEM TO MAKE A DECISION ABOUT

2162
01:14:50,760 --> 01:14:54,800
WHETHER OR NOT IT WOULD BE

2163
01:14:54,800 --> 01:14:56,880
HELPFUL OR POTENTIALLY

2164
01:14:56,880 --> 01:14:58,720
SUCCESSFUL TO INVESTIGATE THIS

2165
01:14:58,720 --> 01:15:02,440
PARTICULAR ASSET IN A PAIN

2166
01:15:02,440 --> 01:15:07,240
THERAPEUTIC CONDITION.

2167
01:15:07,240 --> 01:15:08,440
ON THE LOWER LEFT-HAND PART OF

2168
01:15:08,440 --> 01:15:10,440
THE SLIDE, YOU SEE THE PRECISION

2169
01:15:10,440 --> 01:15:12,720
HUMAN PAIN INITIATIVE, THE

2170
01:15:12,720 --> 01:15:15,320
REJOIN, THE ANIMAL MODEL

2171
01:15:15,320 --> 01:15:15,640
DEVELOPMENT.

2172
01:15:15,640 --> 01:15:16,520
THESE ARE ALL SPECIFIC PROGRAMS

2173
01:15:16,520 --> 01:15:20,720
WHICH WE SEE AS FEEDING IN DATA

2174
01:15:20,720 --> 01:15:22,120
OR INFORMATION, OR IN THE CASE

2175
01:15:22,120 --> 01:15:27,680
OF AN MOL M ANIMAL MODEL DEVELO,

2176
01:15:27,680 --> 01:15:28,680
VALIDATED MODELS IN ORDER TO

2177
01:15:28,680 --> 01:15:30,400
ENHANCE THE PROGRAMS THAT ARE IN

2178
01:15:30,400 --> 01:15:32,600
THOSE INITIATIVES TO MAKE THEM

2179
01:15:32,600 --> 01:15:34,600
MORE SUCCESSFUL AND HOPEFULLY

2180
01:15:34,600 --> 01:15:36,880
GIVE US AN IDEA AND HELP US

2181
01:15:36,880 --> 01:15:37,760
PREDICT WHETHER OR NOT THEY'LL

2182
01:15:37,760 --> 01:15:43,680
BE SUCCESSFUL IN PATIENTS.

2183
01:15:43,680 --> 01:15:44,960
SO I'M GOING TO DISCUSS

2184
01:15:44,960 --> 01:15:46,520
INITIALLY THE PAIN TARGET

2185
01:15:46,520 --> 01:15:49,680
DISCOVERY AND VALIDATION

2186
01:15:49,680 --> 01:15:51,440
PROGRAMS.

2187
01:15:51,440 --> 01:15:54,040
THERE'S WHO PARTS YOU SEE THEM

2188
01:15:54,040 --> 01:15:55,040
BROKEN INTO.

2189
01:15:55,040 --> 01:15:56,120
ON LEFT SIDE YOU SEE THE

2190
01:15:56,120 --> 01:15:57,440
DISCOVERY AND VALIDATION OF

2191
01:15:57,440 --> 01:15:57,960
NOVEL TARGETS.

2192
01:15:57,960 --> 01:15:59,520
THE FUNDING ANNOUNCEMENTS HAVE

2193
01:15:59,520 --> 01:16:02,880
BEEN ISSUED OVER THE LAST FOUR

2194
01:16:02,880 --> 01:16:05,600
YEARS, IN THE FORM OF

2195
01:16:05,600 --> 01:16:08,000
SUPPLEMENTS INITIALLY, R01s

2196
01:16:08,000 --> 01:16:13,920
AND R21s TO REALLY VALIDATE

2197
01:16:13,920 --> 01:16:16,000
TARGETS AND TO PRODUCE A DATASET

2198
01:16:16,000 --> 01:16:18,840
IN ORDER TO HELP THOSE WHO WERE

2199
01:16:18,840 --> 01:16:20,160
DOING THERAPEUTICS DEVELOPMENT

2200
01:16:20,160 --> 01:16:21,800
DETERMINE WHETHER OR NOT IT'S

2201
01:16:21,800 --> 01:16:23,880
WORTH BUILDING AN ASSET OR

2202
01:16:23,880 --> 01:16:25,720
DEVELOPING TOOL COMPOUNDS FOR

2203
01:16:25,720 --> 01:16:27,440
THIS ASSET IN ORDER TO SEE

2204
01:16:27,440 --> 01:16:29,000
WHETHER OR NOT THEY'LL WORK IN

2205
01:16:29,000 --> 01:16:30,200
ANIMAL MODELS OR IN THANK YOU

2206
01:16:30,200 --> 01:16:35,040
MAN THUMANTISSUES OR THE VALIDAE

2207
01:16:35,040 --> 01:16:35,800
MODELS WE HAVE.

2208
01:16:35,800 --> 01:16:37,720
THE GOAL OF THIS IS TO PRODUCE

2209
01:16:37,720 --> 01:16:39,120
DATASETS TO CONVINCE OTHERS TO

2210
01:16:39,120 --> 01:16:40,120
DO THERAPEUTIC DEVELOPMENT.

2211
01:16:40,120 --> 01:16:43,640
WE HAVE DONE 56 AWARDS IN THIS

2212
01:16:43,640 --> 01:16:46,560
AREA, WHICH REPRESENT 25

2213
01:16:46,560 --> 01:16:48,440
DIFFERENT TYPES OF PAIN AND 55

2214
01:16:48,440 --> 01:16:49,640
DIFFERENT TARGETS.

2215
01:16:49,640 --> 01:16:51,560
SO THERE'S MANY TARGETS THAT ARE

2216
01:16:51,560 --> 01:16:53,120
IN THE PROCESS OF BEING

2217
01:16:53,120 --> 01:16:53,680
VALIDATED HERE.

2218
01:16:53,680 --> 01:16:55,080
AND WHAT WE'RE DOING ON THE

2219
01:16:55,080 --> 01:16:57,440
FRONT END IS TRYING TO PRODUCE A

2220
01:16:57,440 --> 01:17:00,600
HUGE DATASET OF VALIDATION FOR

2221
01:17:00,600 --> 01:17:05,720
THESE MANY TYPES OF TARGETS, AND

2222
01:17:05,720 --> 01:17:08,680
MANY PAIN CONDITIONS, IN ORDER

2223
01:17:08,680 --> 01:17:12,280
TO MAKE SURE THAT THERE ISN'T

2224
01:17:12,280 --> 01:17:15,240
JUST A PIGEONHOLING OF THE,

2225
01:17:15,240 --> 01:17:17,240
LET'S SAY, THE MOST POPULAR PAIN

2226
01:17:17,240 --> 01:17:18,440
CONDITIONS OR THE ONES THAT WE

2227
01:17:18,440 --> 01:17:21,480
THINK ARE THE MOST IMPORTANT,

2228
01:17:21,480 --> 01:17:23,520
BUT REALLY HAVING THE SCIENCE OF

2229
01:17:23,520 --> 01:17:24,880
WHETHER OR NOT THINGS ARE

2230
01:17:24,880 --> 01:17:26,480
ACTUALLY CAPABLE OF MAKING IT

2231
01:17:26,480 --> 01:17:29,360
THROUGH THE CLINICAL TRIALS AND

2232
01:17:29,360 --> 01:17:32,200
VALIDATED IN ORDER TO DRIVE

2233
01:17:32,200 --> 01:17:34,920
WHETHER OR NOT WE SUPPORT THE

2234
01:17:34,920 --> 01:17:36,040
PROJECT OR WHETHER OR NOT IT

2235
01:17:36,040 --> 01:17:37,920
SHOULD GO INTO THERAPEUTICS

2236
01:17:37,920 --> 01:17:38,720
DEVELOPMENT.

2237
01:17:38,720 --> 01:17:40,760
AN IMPORTANT PART OF THOSE

2238
01:17:40,760 --> 01:17:42,440
R01s ALSO IS THE TYPE OF

2239
01:17:42,440 --> 01:17:44,600
VALIDATION.

2240
01:17:44,600 --> 01:17:45,720
SO AS A PART OF THE HEAL

2241
01:17:45,720 --> 01:17:49,000
INITIATIVE IN 2020, WE CONVENED

2242
01:17:49,000 --> 01:17:51,720
A WORKSHOP WITH INDUSTRY MEMBERS

2243
01:17:51,720 --> 01:17:53,160
AND ACADEMICS AND BROUGHT THEM

2244
01:17:53,160 --> 01:17:54,880
TOGETHER AND ASKED THEM THE

2245
01:17:54,880 --> 01:17:56,440
QUESTION, WHAT TYPE OF

2246
01:17:56,440 --> 01:17:58,280
VALIDATION IS REALLY NEEDED TO

2247
01:17:58,280 --> 01:18:00,120
HELP WITH THAT PREDICTION ABOUT

2248
01:18:00,120 --> 01:18:02,680
WHETHER OR NOT THE PHASE TWO OR

2249
01:18:02,680 --> 01:18:03,960
THE LATER CLINICAL TRIALS ARE

2250
01:18:03,960 --> 01:18:05,080
GOING TO BE SUCCESSFUL.

2251
01:18:05,080 --> 01:18:06,920
AND WE RECENTLY HAD A

2252
01:18:06,920 --> 01:18:08,160
PUBLICATION IN THAT AREA, AND

2253
01:18:08,160 --> 01:18:12,280
THAT WAS LED BY -- OR DIRECTLY

2254
01:18:12,280 --> 01:18:16,200
LED BY INDUSTRY MEMBERS AND THE

2255
01:18:16,200 --> 01:18:19,040
DIVISION FOR TRANSLATIONAL

2256
01:18:19,040 --> 01:18:23,200
RESEARCH TEAM, AMIR TAMIZ AND

2257
01:18:23,200 --> 01:18:24,000
HIS GROUP.

2258
01:18:24,000 --> 01:18:25,520
SO WE'RE REALLY PROUD OF THAT

2259
01:18:25,520 --> 01:18:27,160
PUBLICATION, IT'S A GUIDE FOR

2260
01:18:27,160 --> 01:18:28,360
THE COMMUNITY AND IT ALSO GUIDED

2261
01:18:28,360 --> 01:18:29,640
THESE PARTICULAR FUNDING

2262
01:18:29,640 --> 01:18:30,120
ANNOUNCEMENTS.

2263
01:18:30,120 --> 01:18:31,000
ON THE RIGHT-HAND SIDE OF THE

2264
01:18:31,000 --> 01:18:32,920
SLIDE, THIS PRECISION HUMAN PAIN

2265
01:18:32,920 --> 01:18:34,480
NETWORK, PROGRAM TO REVEAL AND

2266
01:18:34,480 --> 01:18:35,680
EVALUATE CELLS TO GENE

2267
01:18:35,680 --> 01:18:38,880
INFORMATION THAT SPECIFY

2268
01:18:38,880 --> 01:18:40,400
INTRICACIES AND ORIGINS AND THE

2269
01:18:40,400 --> 01:18:42,240
NATURE OF HUMAN PAIN.

2270
01:18:42,240 --> 01:18:45,200
IT'S A MOUTHFUL, BUT IT REALLY

2271
01:18:45,200 --> 01:18:47,160
SAYS A LOT AND THAT'S WHY I

2272
01:18:47,160 --> 01:18:48,040
SPELLED IT OUT.

2273
01:18:48,040 --> 01:18:50,200
THIS INITIATIVE IS FUNDING

2274
01:18:50,200 --> 01:18:52,640
GROUPS THAT ARE TAKING

2275
01:18:52,640 --> 01:18:55,680
EXCLUSIVELY HUMAN TISSUE FROM

2276
01:18:55,680 --> 01:18:56,360
INDIVIDUALS WITH PATHOLOGICAL

2277
01:18:56,360 --> 01:18:59,520
PAIN CONDITIONS, TRIGEMINAL PAIN

2278
01:18:59,520 --> 01:19:01,040
CONDITIONS, SOMATIC PAIN

2279
01:19:01,040 --> 01:19:03,280
CONDITIONS, OSTEOARTHRITIS, LOW

2280
01:19:03,280 --> 01:19:06,960
BACK PAIN, HEADACHE, TMD, ET

2281
01:19:06,960 --> 01:19:07,720
CETERA, ET CETERA.

2282
01:19:07,720 --> 01:19:10,800
AND REALLY USING THE TISSUE FROM

2283
01:19:10,800 --> 01:19:14,000
THOUSANDS OF PATIENTS, AND DOING

2284
01:19:14,000 --> 01:19:16,840
CELLULAR FUNCTIONAL PHENOTYPES,

2285
01:19:16,840 --> 01:19:20,520
MOLECULAR SIGNATURES, PROTEOMICS

2286
01:19:20,520 --> 01:19:24,040
AND EVEN IN SOME I CASES

2287
01:19:24,040 --> 01:19:25,920
TRANSCRIPTOMICS, AND PRODUCING

2288
01:19:25,920 --> 01:19:26,360
DATASETS.

2289
01:19:26,360 --> 01:19:27,560
THAT'S THE GOAL OF THESE

2290
01:19:27,560 --> 01:19:29,800
PROGRAMS, IS TO PRODUCE DATASETS

2291
01:19:29,800 --> 01:19:31,200
THAT WILL BE SHARED WITH OTHERS

2292
01:19:31,200 --> 01:19:35,320
IN ORDER TO HELP THEM DEVELOP

2293
01:19:35,320 --> 01:19:37,880
THE VALIDATION OR TO VALIDATE

2294
01:19:37,880 --> 01:19:39,600
THE TARGETS THAT THEY MIGHT HAVE

2295
01:19:39,600 --> 01:19:42,080
FOUND IN AN ANIMAL MODEL IN

2296
01:19:42,080 --> 01:19:43,720
ORDER TO HELP THEM WITH THE

2297
01:19:43,720 --> 01:19:44,360
THERAPEUTICS DEVELOPMENT

2298
01:19:44,360 --> 01:19:45,280
PROCESS.

2299
01:19:45,280 --> 01:19:50,120
WE ALSO HAVE A GOAL OF PRODUCING

2300
01:19:50,120 --> 01:19:52,040
THIS DATA COORDINATING CENTER TO

2301
01:19:52,040 --> 01:19:54,120
HELP BUILDING KNOWLEDGE BASES,

2302
01:19:54,120 --> 01:19:56,480
HARMONIZATION OF THE DATA, AND

2303
01:19:56,480 --> 01:19:58,080
ENHANCE THE SHARING OF IT AND

2304
01:19:58,080 --> 01:20:00,160
CREATE THESE DIGITAL RESOURCES

2305
01:20:00,160 --> 01:20:01,920
FOR THE INTEGRATION,

2306
01:20:01,920 --> 01:20:03,200
VISUALIZATION AND DISSEMINATION

2307
01:20:03,200 --> 01:20:05,640
OF THIS WORK TO INSPIRE OTHERS

2308
01:20:05,640 --> 01:20:07,160
TO COME INTO THE PAIN FIELD THAT

2309
01:20:07,160 --> 01:20:08,400
MAYBE DON'T HAVE INITIALLY THE

2310
01:20:08,400 --> 01:20:10,560
PAIN EXPERTISE BUT HAVE THE

2311
01:20:10,560 --> 01:20:11,120
COMPUTATIONAL EXPERTISE, ET

2312
01:20:11,120 --> 01:20:14,760
CETERA, THAT HELP US DISCOVER

2313
01:20:14,760 --> 01:20:16,800
WHICH ARE THE BEST TARGETS FOR

2314
01:20:16,800 --> 01:20:24,920
THESE PAIN CONDITIONS.

2315
01:20:24,920 --> 01:20:26,280
THIS SLIDE SHOWS SOME OF THE

2316
01:20:26,280 --> 01:20:28,080
2023 INITIATIVES WE HAVE TO

2317
01:20:28,080 --> 01:20:30,280
FACILITATE THIS DISCOVERY AT THE

2318
01:20:30,280 --> 01:20:30,800
EARLY STAGE.

2319
01:20:30,800 --> 01:20:32,200
ON THE LEFT SIDE, WE HAVE TWO

2320
01:20:32,200 --> 01:20:33,200
DIFFERENT TYPES OF INITIATIVES

2321
01:20:33,200 --> 01:20:35,600
TO SUPPORT DEVELOPING ANIMAL

2322
01:20:35,600 --> 01:20:37,840
MODELS, IN THIS CASE, NON-RODENT

2323
01:20:37,840 --> 01:20:40,120
ANIMAL MODELS.

2324
01:20:40,120 --> 01:20:42,200
CURRENTLY THE RODENT MODELS

2325
01:20:42,200 --> 01:20:42,960
OVERWHELMINGLY DOMINATE THE

2326
01:20:42,960 --> 01:20:44,400
RESEARCH THAT'S DONE IN THE

2327
01:20:44,400 --> 01:20:45,600
PRE-CLINICAL PAIN SPACE.

2328
01:20:45,600 --> 01:20:47,360
BUT TO REALLY VALIDATE AND

2329
01:20:47,360 --> 01:20:49,320
DEVELOP NON-RODENT MODELS THAT

2330
01:20:49,320 --> 01:20:53,920
COULD BE USED FOR THERAPEUTICS

2331
01:20:53,920 --> 01:20:55,400
DEVELOPMENT, AND THEN WE HAVE A

2332
01:20:55,400 --> 01:20:58,560
NOTICE OF SPECIAL INTEREST,

2333
01:20:58,560 --> 01:21:01,760
THESE NOSIs, TO DEVELOP AND

2334
01:21:01,760 --> 01:21:03,120
EVALUATE PAIN RELATED MODELS AND

2335
01:21:03,120 --> 01:21:05,320
END POINTS TO FACILITATE THIS

2336
01:21:05,320 --> 01:21:06,240
ANALGESIC DISCOVER REAL FOR

2337
01:21:06,240 --> 01:21:07,600
ASSETS THAT HAVE LITTLE OR NO

2338
01:21:07,600 --> 01:21:08,720
ADDICTION LIABILITY.

2339
01:21:08,720 --> 01:21:10,880
SO THAT'S A PART OF THE IGNITE

2340
01:21:10,880 --> 01:21:12,840
PROGRAM, AND THOSE ARE

2341
01:21:12,840 --> 01:21:13,520
MILESTONE-DRIVEN, AND THEN WE

2342
01:21:13,520 --> 01:21:15,680
ALSO HAVE THE R01 PROGRAM FOR

2343
01:21:15,680 --> 01:21:17,360
DEVELOPING THESE NON-RODENT

2344
01:21:17,360 --> 01:21:18,120
MAMMALIAN PAIN MODELS.

2345
01:21:18,120 --> 01:21:20,680
ON THE RIGHT SIDE OF THE SLIDE,

2346
01:21:20,680 --> 01:21:23,800
WE HAVE THE INTEGRATED BASIC AND

2347
01:21:23,800 --> 01:21:25,360
CLINICAL TEAM-BASED RESEARCH IN

2348
01:21:25,360 --> 01:21:25,680
PAIN.

2349
01:21:25,680 --> 01:21:28,640
AND THIS IS AN RM1 MECHANISM.

2350
01:21:28,640 --> 01:21:31,240
AND THE POINT HERE IS TO COMBINE

2351
01:21:31,240 --> 01:21:34,760
IN ONE SINGLE PROJECT THE

2352
01:21:34,760 --> 01:21:35,760
CLINICAL AND BASIC SCIENCE

2353
01:21:35,760 --> 01:21:36,960
RESEARCH.

2354
01:21:36,960 --> 01:21:38,600
NOT PARALLEL PROJECTS, BUT

2355
01:21:38,600 --> 01:21:40,440
REALLY A COMBINED PROJECT.

2356
01:21:40,440 --> 01:21:43,640
AND THIS IS TO ESTABLISH THESE

2357
01:21:43,640 --> 01:21:45,440
COMPREHENSIVE UNDERSTANDING OF

2358
01:21:45,440 --> 01:21:49,000
HUMAN PAIN BIOLOGY, WHICH WE MAY

2359
01:21:49,000 --> 01:21:52,080
NEED A MODEL SYSTEM TO ANSWER A

2360
01:21:52,080 --> 01:21:56,640
QUESTION THAT WAS IDENTIFIED IN

2361
01:21:56,640 --> 01:21:57,360
THE HUMAN CONDITION.

2362
01:21:57,360 --> 01:21:58,520
SO YOU HAVE A CLINICIAN AND YOU

2363
01:21:58,520 --> 01:22:02,920
HAVE A BASIC SCIENTIST OR A

2364
01:22:02,920 --> 01:22:04,440
CLINICIAN-SCIENTIST WITH A BASIC

2365
01:22:04,440 --> 01:22:06,320
SCIENTIST TO ANSWER THESE

2366
01:22:06,320 --> 01:22:09,480
QUESTIONS IN ONE PARTICULAR

2367
01:22:09,480 --> 01:22:10,760
PROJECT.

2368
01:22:10,760 --> 01:22:11,760
THE EMPHASIS IS

2369
01:22:11,760 --> 01:22:12,160
BACK-TRANSLATION.

2370
01:22:12,160 --> 01:22:13,160
THIS IS ANOTHER RECOMMENDATION

2371
01:22:13,160 --> 01:22:14,360
THAT WE HAD FROM THAT WORKSHOP

2372
01:22:14,360 --> 01:22:17,360
THAT WE DID IN 2020, THAT THOSE

2373
01:22:17,360 --> 01:22:20,120
IN PHARMA, THOSE IN BIG PHARMA

2374
01:22:20,120 --> 01:22:21,760
ARE REALLY LOOKING FOR THESE

2375
01:22:21,760 --> 01:22:22,960
VALIDATED TARGET, HUMAN TISSUE,

2376
01:22:22,960 --> 01:22:26,120
THAT REALLY HAVE A CLINICAL

2377
01:22:26,120 --> 01:22:30,400
BASIS FOR THE RATIONALE FOR

2378
01:22:30,400 --> 01:22:32,040
WORKING UP THAT TARGET FOR

2379
01:22:32,040 --> 01:22:40,560
THERAPEUTICS DEVELOPMENT.

2380
01:22:40,560 --> 01:22:42,000
THE NEXT PROGRAM I'M GOING TO

2381
01:22:42,000 --> 01:22:43,320
TALK ABOUT IS TRANSITION FROM

2382
01:22:43,320 --> 01:22:45,840
THAT BASIC BIOLOGY,

2383
01:22:45,840 --> 01:22:46,800
UNDERSTANDING THAT THE

2384
01:22:46,800 --> 01:22:47,600
PATHOLOGICAL CONDITION FROM THE

2385
01:22:47,600 --> 01:22:48,720
TARGET MOLECULAR LEVEL, ET

2386
01:22:48,720 --> 01:22:50,120
CETERA, AND THEN ASKING THE

2387
01:22:50,120 --> 01:22:51,240
QUESTIONS, WHAT STEPS ARENESS

2388
01:22:51,240 --> 01:22:55,480
SAIR HEARENECESSARY IN ORDER TO,

2389
01:22:55,480 --> 01:22:57,360
TO BEGIN, A THERAPEUTICS

2390
01:22:57,360 --> 01:22:57,880
DEVELOPMENT PROGRAM.

2391
01:22:57,880 --> 01:22:59,880
AND WE HAVE TWO DIFFERENT

2392
01:22:59,880 --> 01:23:01,280
GRANTING MECHANISMS IN THIS AREA

2393
01:23:01,280 --> 01:23:03,600
TO HELP THE INDIVIDUALS BRIDGE

2394
01:23:03,600 --> 01:23:07,760
THAT VALIDATED TARGET TO THEN

2395
01:23:07,760 --> 01:23:10,080
PLAN AN INITIAL THERAPEUTICS

2396
01:23:10,080 --> 01:23:11,280
DEVELOPMENT PROGRAM AND THEN

2397
01:23:11,280 --> 01:23:14,240
HAVE THE TEAM TOGETHER THAT

2398
01:23:14,240 --> 01:23:17,080
INCLUDES FORMULATION EXPERTISE,

2399
01:23:17,080 --> 01:23:19,240
CHEMISTRY, THE PAIN BIOLOGY,

2400
01:23:19,240 --> 01:23:22,680
MAYBE THAT CLINICIAN, AND EVEN A

2401
01:23:22,680 --> 01:23:24,560
PATIENT ADVOCATE THAT CAN INFORM

2402
01:23:24,560 --> 01:23:25,640
WHAT THE PATIENT REALLY NEED

2403
01:23:25,640 --> 01:23:26,640
FROM THE THERAPEUTIC.

2404
01:23:26,640 --> 01:23:27,840
SO WE HAVE TWO PROGRAMS TO DO

2405
01:23:27,840 --> 01:23:28,240
THAT.

2406
01:23:28,240 --> 01:23:30,360
ONE IS A TWO-YEAR PLANNING

2407
01:23:30,360 --> 01:23:32,680
GRANT, THE OTHER IS A FIVE-YEAR

2408
01:23:32,680 --> 01:23:33,520
MULTICOMPONENT PROGRAM THAT

2409
01:23:33,520 --> 01:23:35,600
SUPPORTS THE DEVELOPMENT OF

2410
01:23:35,600 --> 01:23:39,440
ASSAYS DOING SCREENING, EARLY

2411
01:23:39,440 --> 01:23:41,320
OPTIMIZATION, EVEN

2412
01:23:41,320 --> 01:23:43,960
PHARMACODYNAMIC BIOMARKER

2413
01:23:43,960 --> 01:23:46,000
DISCOVERY, PK/PD STUDIES, ET

2414
01:23:46,000 --> 01:23:46,680
CETERA.

2415
01:23:46,680 --> 01:23:47,640
SO THERE'S INITIAL STUDIES TO

2416
01:23:47,640 --> 01:23:49,160
GET THE PROGRAM GOING, AND THEN

2417
01:23:49,160 --> 01:23:50,720
THOSE PROGRAMS, THE GOAL HERE IS

2418
01:23:50,720 --> 01:23:53,240
TO FEED THEM INTO THE PAIN

2419
01:23:53,240 --> 01:23:54,000
THERAPEUTICS DEVELOPMENT

2420
01:23:54,000 --> 01:24:01,720
PROGRAM, THE PTDP PROGRAM.

2421
01:24:01,720 --> 01:24:08,040
ON THE PLANNING GRANTS -- THIS

2422
01:24:08,040 --> 01:24:13,720
IS REALLY TEAM SCIENCE.

2423
01:24:13,720 --> 01:24:15,360
SO THE PAIN THERAPEUTICS

2424
01:24:15,360 --> 01:24:16,800
DEVELOPMENT PROGRAM IS REALLY

2425
01:24:16,800 --> 01:24:21,080
BASED ON THE BLUEPRINT

2426
01:24:21,080 --> 01:24:22,320
NEUROTHERAPEUTICS PROGRAM WHICH

2427
01:24:22,320 --> 01:24:23,800
YOU'VE HEARD ABOUT FOR MANY

2428
01:24:23,800 --> 01:24:25,800
YEARS AT NINDS AND ACROSS THE

2429
01:24:25,800 --> 01:24:27,080
NIH INSTITUTES.

2430
01:24:27,080 --> 01:24:31,480
AND WE SPECIALIZED THIS PROGRAM

2431
01:24:31,480 --> 01:24:34,640
FOR DEVELOPING THERAPEUTICS,

2432
01:24:34,640 --> 01:24:35,880
SMALL MOLECULES AND BIOLOGICS

2433
01:24:35,880 --> 01:24:36,840
FOR TREATING PAIN.

2434
01:24:36,840 --> 01:24:40,480
NOW, THIS USES THE UG3,

2435
01:24:40,480 --> 01:24:42,240
UH3 PHASED MECHANISM AND JUST

2436
01:24:42,240 --> 01:24:44,640
LIKE IN THE BPM PROGRAM, IT'S A

2437
01:24:44,640 --> 01:24:47,040
CONSULTANT GROUP TO HELP

2438
01:24:47,040 --> 01:24:48,480
INDIVIDUALS WITH THEIR

2439
01:24:48,480 --> 01:24:49,560
THERAPEUTICS DEVELOPMENT.

2440
01:24:49,560 --> 01:24:50,560
THERE'S CONTRACTS THAT WE USE,

2441
01:24:50,560 --> 01:24:53,560
AND MOST OF THE WORK IS DONE

2442
01:24:53,560 --> 01:24:54,760
WITH THE CONTRACTS, THEY HAVE

2443
01:24:54,760 --> 01:24:56,160
OPPORTUNITY TO DO THEIR

2444
01:24:56,160 --> 01:24:58,440
CHEMISTRY THERE, THEIR TOX

2445
01:24:58,440 --> 01:25:00,000
STUDIES, ET CETERA, AND THIS

2446
01:25:00,000 --> 01:25:04,240
WILL BRING THEM FROM LEAD

2447
01:25:04,240 --> 01:25:05,560
OPTIMIZATION, LET'S SAY THEY

2448
01:25:05,560 --> 01:25:11,160
COME IN IN THE DISCOVERY STAGE,

2449
01:25:11,160 --> 01:25:12,840
IND ENABLING STUDY, WE CAN DO

2450
01:25:12,840 --> 01:25:14,480
THAT ALL WITH OUR CONTRACTS, AND

2451
01:25:14,480 --> 01:25:15,760
PROBABLY MOST IMPORTANTLY IS IF

2452
01:25:15,760 --> 01:25:17,760
THEY GET TO THE STAGE, WHERE

2453
01:25:17,760 --> 01:25:20,600
THEY CAN DO THAT SUBMISSION FOR

2454
01:25:20,600 --> 01:25:22,040
THEIR IND IS WE ALSO HAVE A

2455
01:25:22,040 --> 01:25:24,360
CONTRACT TO HELP THEM WITH THEIR

2456
01:25:24,360 --> 01:25:24,880
PHASE ONE CLINICAL TRIALS.

2457
01:25:24,880 --> 01:25:29,200
SO IT REALLY A SOUP TO NUTS

2458
01:25:29,200 --> 01:25:32,400
SERVICE FOR THE GROUPS WITH

2459
01:25:32,400 --> 01:25:33,080
THERAPEUTICS DEVELOPMENT

2460
01:25:33,080 --> 01:25:34,120
EXPERTISE OR IF THEY ONLY HAVE A

2461
01:25:34,120 --> 01:25:35,560
LITTLE BIT OF THAT EXPERTISE,

2462
01:25:35,560 --> 01:25:38,480
THAT THEY CAN GET THAT

2463
01:25:38,480 --> 01:25:40,040
CONSULTANT AND EXPERTISE FROM

2464
01:25:40,040 --> 01:25:42,640
THE NIH STAFF, WHICH THE STAFF

2465
01:25:42,640 --> 01:25:45,640
THAT RUNS THIS HAS LOTS OF FARM

2466
01:25:45,640 --> 01:25:49,680
MA EXPERIENCE, AND PAIN PHARMA

2467
01:25:49,680 --> 01:25:52,520
EXPERIENCE, BRING THAT TO THEIR

2468
01:25:52,520 --> 01:25:56,920
PROJECTS AND REALLY BRING THAT

2469
01:25:56,920 --> 01:25:57,360
EXPERIENCE.

2470
01:25:57,360 --> 01:25:59,120
YOU CAN SEE THE MANY PAIN

2471
01:25:59,120 --> 01:26:00,200
CONDITIONS WE HAVE REPRESENTED

2472
01:26:00,200 --> 01:26:01,320
HERE, AND EVEN THOUGH MANY OF

2473
01:26:01,320 --> 01:26:02,960
THESE PAIN CONDITIONS ARE NOT IN

2474
01:26:02,960 --> 01:26:06,920
NINDS'S MISSION, IT'S NINDS WITH

2475
01:26:06,920 --> 01:26:08,200
THE OTHER INSTITUTES THAT DO

2476
01:26:08,200 --> 01:26:10,200
HAVE THESE PAIN CONDITIONS IN

2477
01:26:10,200 --> 01:26:11,440
THEIR MISSION THROUGH THE HEAL

2478
01:26:11,440 --> 01:26:13,240
INITIATIVE, WE CAN BRING THOSE

2479
01:26:13,240 --> 01:26:14,360
GROUPS TOGETHER TO GET TO THIS

2480
01:26:14,360 --> 01:26:16,440
GOAL OF GETTING NEW TREATMENT,

2481
01:26:16,440 --> 01:26:17,560
YOU KNOW, VALIDATED AND IN THE

2482
01:26:17,560 --> 01:26:25,160
HANDS OF THE PHYSICIANS.

2483
01:26:25,160 --> 01:26:26,720
SO I STATED THAT THE GOAL WAS TO

2484
01:26:26,720 --> 01:26:27,600
REALLY GET THE TREATMENTS INTO

2485
01:26:27,600 --> 01:26:29,120
THE HANDS OF THE PHYSICIANS AND

2486
01:26:29,120 --> 01:26:29,480
PATIENTS.

2487
01:26:29,480 --> 01:26:34,760
WE CANNOT DO THAT WITHOUT

2488
01:26:34,760 --> 01:26:35,520
COMMERCIAL BUSINESSES.

2489
01:26:35,520 --> 01:26:38,160
AND THE SBIR PROGRAM IN THE HEAL

2490
01:26:38,160 --> 01:26:41,520
INITIATIVE HAS REALLY BEEN

2491
01:26:41,520 --> 01:26:44,600
TREMENDOUSLY SUCCESSFUL.

2492
01:26:44,600 --> 01:26:47,800
WE'VE HAD 172 COMPANIES THAT

2493
01:26:47,800 --> 01:26:49,080
HAVE APPLIED FOR THESE PROGRAMS.

2494
01:26:49,080 --> 01:26:53,800
WE FUNDED 46 OF THESE COMPANIES

2495
01:26:53,800 --> 01:26:56,080
FOR 49 DIFFERENT PROJECTS.

2496
01:26:56,080 --> 01:26:59,080
SPANNING THE PAIN INTEREST

2497
01:26:59,080 --> 01:26:59,800
ACROSS NINE DIFFERENT NIH

2498
01:26:59,800 --> 01:27:00,720
INSTITUTES, AND THAT'S SOMETHING

2499
01:27:00,720 --> 01:27:01,680
THAT'S REALLY SPECIAL ABOUT THE

2500
01:27:01,680 --> 01:27:03,880
NIH HEAL INITIATIVE, THAT IT'S

2501
01:27:03,880 --> 01:27:05,400
TRANS-NIH, AND THAT WE CAN TAKE

2502
01:27:05,400 --> 01:27:07,640
AWAY THE DISCUSSION OF THE

2503
01:27:07,640 --> 01:27:08,400
MISSION RELEVANCE WHEN IT COMES

2504
01:27:08,400 --> 01:27:09,960
TO WHAT TYPE OF PAIN, AND JUST

2505
01:27:09,960 --> 01:27:11,480
REALLY ASK THE QUESTION, WHAT'S

2506
01:27:11,480 --> 01:27:13,560
THE POTENTIAL OF THIS PARTICULAR

2507
01:27:13,560 --> 01:27:16,040
PROJECT TO MAKE A DIFFERENCE FOR

2508
01:27:16,040 --> 01:27:17,840
THOSE WHO ARE SUFFERING FROM

2509
01:27:17,840 --> 01:27:22,280
PAIN.

2510
01:27:22,280 --> 01:27:25,160
AND OF COURSE THE OPIOID

2511
01:27:25,160 --> 01:27:26,480
EPIDEMIC.

2512
01:27:26,480 --> 01:27:31,280
WE'VE ALLOCATED THROUGH THE SBI

2513
01:27:31,280 --> 01:27:32,120
PROGRAM $38 MILLION AT THIS

2514
01:27:32,120 --> 01:27:36,680
POINT AND IT ACTUALLY EXCEEDS

2515
01:27:36,680 --> 01:27:38,320
THAT, THE HEAL OD AND THE

2516
01:27:38,320 --> 01:27:40,160
EXECUTIVE COMMITTEE HAS REALLY

2517
01:27:40,160 --> 01:27:41,640
SEEN THE POTENTIAL FOR THESE

2518
01:27:41,640 --> 01:27:43,720
PROGRAMS AND THERE'S BEEN A

2519
01:27:43,720 --> 01:27:46,000
GREATER ALLOCATION THAN THAT

2520
01:27:46,000 --> 01:27:52,000
REQUIRED MINIMUM, LET'S SAY.

2521
01:27:52,000 --> 01:27:56,640
LET'S GET N INTO MORE OF THE

2522
01:27:56,640 --> 01:27:58,920
DETAILS WE'VE HAD IN THE SBIR.

2523
01:27:58,920 --> 01:28:01,480
ONE OF THE REAL BENCHMARKS OF

2524
01:28:01,480 --> 01:28:03,440
THE SUCCESS OF THESE

2525
01:28:03,440 --> 01:28:04,120
THERAPEUTICS DEVELOPMENT

2526
01:28:04,120 --> 01:28:05,640
PROGRAMS IS GETTING THAT

2527
01:28:05,640 --> 01:28:06,720
TRANSITION FROM THE SCIENTIFIC

2528
01:28:06,720 --> 01:28:07,600
QUESTION AND DEVELOPMENT OF AN

2529
01:28:07,600 --> 01:28:10,240
ASSET AND ASKING IS IT READY FOR

2530
01:28:10,240 --> 01:28:11,000
THE CLINIC.

2531
01:28:11,000 --> 01:28:12,480
THAT'S WHAT BIG PHARMA IS

2532
01:28:12,480 --> 01:28:13,560
TELLING US THEY WANT TO SEE.

2533
01:28:13,560 --> 01:28:15,880
THEY WANT TO SEE THE HUMAN DATA,

2534
01:28:15,880 --> 01:28:18,520
THEY WANT TO SEE THE EFFECT IN A

2535
01:28:18,520 --> 01:28:21,360
THERAPEUTIC PAIN CONDITION.

2536
01:28:21,360 --> 01:28:25,520
SO WE HAVE THE AFASCI COMPANY

2537
01:28:25,520 --> 01:28:30,360
THAT HAS DEVELOPED A CAV3

2538
01:28:30,360 --> 01:28:31,320
T-CHANNEL MODULATOR FOR THE

2539
01:28:31,320 --> 01:28:32,880
TREATMENT OF NEUROPATHIC PAIN,

2540
01:28:32,880 --> 01:28:35,080
AND THEY'VE RECEIVED THEIR IND

2541
01:28:35,080 --> 01:28:36,480
SO IT'S IN ACTIVE STATUS WITH

2542
01:28:36,480 --> 01:28:38,320
THE FDA, AND THE COMPANY IS

2543
01:28:38,320 --> 01:28:40,560
CURRENTLY SEEKING FUNDING FOR

2544
01:28:40,560 --> 01:28:42,200
THAT PHASE ONE CLINICAL TRIAL.

2545
01:28:42,200 --> 01:28:45,920
WE ALSO HAVE SOUTH RAMPART

2546
01:28:45,920 --> 01:28:49,560
PHARMA, WHICH HAS AN ASSET, THIS

2547
01:28:49,560 --> 01:28:51,800
SRP-3D, IT'S NOT ITS IND

2548
01:28:51,800 --> 01:28:53,400
APPROVAL, AND THEY'RE CURRENTLY

2549
01:28:53,400 --> 01:28:55,920
IN RECRUITMENT FOR THEIR PHASE

2550
01:28:55,920 --> 01:28:57,480
ONE CLINICAL TRIAL, AND THIS HAS

2551
01:28:57,480 --> 01:29:00,560
ALL BEEN BROUGHT TO THIS STAGE

2552
01:29:00,560 --> 01:29:02,240
WITH HEAL SBIR MONEYS, AND WE

2553
01:29:02,240 --> 01:29:08,280
ALSO HAVE MY CO-LEADS, WHICH IS,

2554
01:29:08,280 --> 01:29:10,480
WHICH IS A DEVICE PROGRAM WHICH

2555
01:29:10,480 --> 01:29:15,520
HAS THEIR IDE APPROVAL, AND HAS

2556
01:29:15,520 --> 01:29:16,640
INITIATED THE NEXT PHASE OF

2557
01:29:16,640 --> 01:29:19,560
CLINICAL TESTING TO INVESTIGATE

2558
01:29:19,560 --> 01:29:20,480
FEASIBILITY AND EFFICACY.

2559
01:29:20,480 --> 01:29:25,560
THE LAST THING I HAVE ON THE

2560
01:29:25,560 --> 01:29:26,800
SLIDE IS COMMERCIALIZATION OF A

2561
01:29:26,800 --> 01:29:28,600
PLATFORM OF HUMAN ON A CHIP TO

2562
01:29:28,600 --> 01:29:32,240
BE AN AID FOR DRUG DISCOVERY.

2563
01:29:32,240 --> 01:29:34,960
SO WE KNOW THAT THE FDA HAS PUT

2564
01:29:34,960 --> 01:29:37,400
OUT RECENT GUIDANCE THAT THEY NO

2565
01:29:37,400 --> 01:29:39,920
LONGER REQUIRE ANIMAL TESTING

2566
01:29:39,920 --> 01:29:43,760
BEFORE YOU GO TO HUMAN DRUG

2567
01:29:43,760 --> 01:29:46,280
TRIALS.

2568
01:29:46,280 --> 01:29:48,920
AND USING THE SBIR HEAL MONEY,

2569
01:29:48,920 --> 01:29:50,000
WE'VE CONTRIBUTED TO ONE OF

2570
01:29:50,000 --> 01:29:52,960
THESE PLATFORMS THAT COMPANIES

2571
01:29:52,960 --> 01:29:57,040
CAN USE TO HELP THEM MAKE THEIR

2572
01:29:57,040 --> 01:30:00,640
GO/NO-GO DECISIONS USING THIS

2573
01:30:00,640 --> 01:30:01,640
SILICA PLATFORM THAT WAS

2574
01:30:01,640 --> 01:30:03,040
DEVELOPED ALSO IN PARTNERSHIP

2575
01:30:03,040 --> 01:30:09,640
WITH NCATS.

2576
01:30:09,640 --> 01:30:10,760
SO AFTER THAT STAGE, AFTER YOU

2577
01:30:10,760 --> 01:30:11,920
GET TO CLINICAL TESTING, ET

2578
01:30:11,920 --> 01:30:12,880
CETERA, YOU STILL HAVE TO

2579
01:30:12,880 --> 01:30:14,480
COMMERCIALIZE THE PRODUCT.

2580
01:30:14,480 --> 01:30:16,600
AND IF IT'S NOT COMMERCIALIZED,

2581
01:30:16,600 --> 01:30:17,680
IT'S STILL NOT GOING TO GET INTO

2582
01:30:17,680 --> 01:30:18,520
THE HANDS OF THE PATIENTS.

2583
01:30:18,520 --> 01:30:19,440
SO THIS GRAPHIC ON THE RIGHT

2584
01:30:19,440 --> 01:30:20,320
SIDE IS REALLY INTERESTING.

2585
01:30:20,320 --> 01:30:22,840
YOU SEE THERE IN THE RED, THOSE

2586
01:30:22,840 --> 01:30:24,160
INDIVIDUALS ARE THE SCIENTISTS.

2587
01:30:24,160 --> 01:30:25,960
AND THESE SMALL COMPANIES HAVE

2588
01:30:25,960 --> 01:30:27,720
LOTS OF HUMAN CAPITAL WHEN IT

2589
01:30:27,720 --> 01:30:31,200
COMES TO SCIENTIFIC EXPERTISE.

2590
01:30:31,200 --> 01:30:32,840
BUT LITTLE OF THAT

2591
01:30:32,840 --> 01:30:33,720
COMMERCIALIZATION CAPITAL OR THE

2592
01:30:33,720 --> 01:30:35,920
EXPERIENCE NEEDED TO BRING

2593
01:30:35,920 --> 01:30:37,600
THINGS TO THE MARKET, AND WE'VE

2594
01:30:37,600 --> 01:30:38,640
DEVELOPED THESE TWO PROGRAMS

2595
01:30:38,640 --> 01:30:40,000
HERE, IF YOU LOOK AT THE ONE ON

2596
01:30:40,000 --> 01:30:42,520
THE BOTTOM, THIS EMBEDDED

2597
01:30:42,520 --> 01:30:44,000
ENTREPRENEUR PROGRAM FOR THESE

2598
01:30:44,000 --> 01:30:45,480
COMPANIES TO APPLY FOR FUNDING,

2599
01:30:45,480 --> 01:30:47,680
TO BRING IN AN EXPERT

2600
01:30:47,680 --> 01:30:49,480
ENTREPRENEUR INTO THEIR GROUP TO

2601
01:30:49,480 --> 01:30:50,480
CAPITALIZE ON THE FEDERAL FUNDS

2602
01:30:50,480 --> 01:30:52,640
THAT WERE THERE, WHO WILL KNOW

2603
01:30:52,640 --> 01:30:54,920
HOW TO GET PRIVATE FUNDING,

2604
01:30:54,920 --> 01:30:56,840
WHICH CAN THEN BRING THEM TO A

2605
01:30:56,840 --> 01:30:58,040
STAGE OF COMMERCIALIZATION.

2606
01:30:58,040 --> 01:31:00,880
AND THEN WE'RE ALSO PLANNING IN

2607
01:31:00,880 --> 01:31:03,200
OCTOBER 2023 THE HEAL PAIN

2608
01:31:03,200 --> 01:31:04,320
PARTNERING COMMITTEE, WHERE WE

2609
01:31:04,320 --> 01:31:07,360
CAN SHOWCASE HEAL FUNDED

2610
01:31:07,360 --> 01:31:09,920
TECHNOLOGIES, PUT THEM IN FRONT

2611
01:31:09,920 --> 01:31:11,680
OF PHARMA COMPANIES TO

2612
01:31:11,680 --> 01:31:13,240
FACILITATE PARTNERING, AND OF

2613
01:31:13,240 --> 01:31:15,040
COURSE EXPLORE OPPORTUNITIES TO

2614
01:31:15,040 --> 01:31:18,600
HEAR FROM THESE COMPANIES AND --

2615
01:31:18,600 --> 01:31:20,600
LARGE AND SMALL, WHAT THE

2616
01:31:20,600 --> 01:31:22,760
BARRIERS ARE TO MAKING THE TRAN

2617
01:31:22,760 --> 01:31:24,480
CIRCLES AND THEN HOPEFULLY

2618
01:31:24,480 --> 01:31:25,240
SUPPLEMENT THESE COMPANIES TO

2619
01:31:25,240 --> 01:31:27,400
HELP THEM IN SOME WAY TO DO THAT

2620
01:31:27,400 --> 01:31:29,280
AND PROVIDE, YOU KNOW,

2621
01:31:29,280 --> 01:31:30,960
ADDITIONAL INITIATIVES TO BRING

2622
01:31:30,960 --> 01:31:32,280
THEM TO THE NEXT STAGE.

2623
01:31:32,280 --> 01:31:34,000
AND THESE PROGRAMS, AGAIN, ARE

2624
01:31:34,000 --> 01:31:35,560
IN PARTNERSHIP WITH NCATS AND

2625
01:31:35,560 --> 01:31:44,240
NINDS.

2626
01:31:44,240 --> 01:31:45,440
NINDS AND THE HEAL INITIATIVE

2627
01:31:45,440 --> 01:31:48,400
DOESN'T JUST PROVIDE FUNDS.

2628
01:31:48,400 --> 01:31:52,080
THE HEAL INITIATIVE HAS ALSO

2629
01:31:52,080 --> 01:31:54,520
PROVIDED US WITH THE ABILITY TO

2630
01:31:54,520 --> 01:31:55,400
DEVELOP THE PRE-CLINICAL

2631
01:31:55,400 --> 01:31:57,160
SCREENING PLATFORM FOR PAIN,

2632
01:31:57,160 --> 01:32:00,520
WHICH IS A PROFILING PROGRAM FOR

2633
01:32:00,520 --> 01:32:03,200
INDIVIDUALS WHO HAVE ASSETS

2634
01:32:03,200 --> 01:32:03,760
ALREADY.

2635
01:32:03,760 --> 01:32:05,920
MAYBE BEING DEVELOPED FOR

2636
01:32:05,920 --> 01:32:06,560
ANOTHER NEUROLOGICAL CONDITION.

2637
01:32:06,560 --> 01:32:08,360
AND THEY WANT TO ASK, CAN IT

2638
01:32:08,360 --> 01:32:11,800
BE -- IS IT WORTH PUTTING THE

2639
01:32:11,800 --> 01:32:13,640
EFFORT INTO -- OR THE FUNDS TO

2640
01:32:13,640 --> 01:32:19,040
DEVELOP THIS ASSET FOR A PAIN

2641
01:32:19,040 --> 01:32:20,240
CONDITION, FOR A PATHOLOGICAL

2642
01:32:20,240 --> 01:32:20,640
PAIN CONDITION.

2643
01:32:20,640 --> 01:32:24,160
SO THIS PROGRAM CAN PROVIDE

2644
01:32:24,160 --> 01:32:25,880
PHARMACOKINETIC STUDIES, IN

2645
01:32:25,880 --> 01:32:27,360
VITRO SCREENING, TESTING IN

2646
01:32:27,360 --> 01:32:30,080
ANIMAL MODELS, WHICH WE HAVE A

2647
01:32:30,080 --> 01:32:34,520
CONTRACTED SITE THAT'S DONE A

2648
01:32:34,520 --> 01:32:36,400
REAL EXCELLENT JOB IN VALIDATING

2649
01:32:36,400 --> 01:32:38,360
THEIR MODELS AND BEING

2650
01:32:38,360 --> 01:32:40,240
CONSISTENT WITH THEM, CONSTANTLY

2651
01:32:40,240 --> 01:32:42,960
RUNNING POSITIVE AND NEGATIVE

2652
01:32:42,960 --> 01:32:43,760
CONTROLS, ET CETERA, ET CETERA,

2653
01:32:43,760 --> 01:32:44,960
SO WE'RE VERY CLEAR ON THE DATA

2654
01:32:44,960 --> 01:32:47,840
AND HOW IT COMES OUT IN THE MANY

2655
01:32:47,840 --> 01:32:48,160
MODELS.

2656
01:32:48,160 --> 01:32:52,080
SOME OF THEM ARE ACUTE MODELS,

2657
01:32:52,080 --> 01:32:53,800
OTHERS ARE CHRONIC MODELS, AND

2658
01:32:53,800 --> 01:32:55,520
WE HAVE THIS TIERED SYSTEM THEY

2659
01:32:55,520 --> 01:32:59,280
CAN GO THROUGH IN ORDER TO

2660
01:32:59,280 --> 01:33:00,160
DETERMINE WHETHER OR NOT THERE'S

2661
01:33:00,160 --> 01:33:01,600
A PARTICULAR TYPE OF PAIN, IS IT

2662
01:33:01,600 --> 01:33:03,040
INFLAMMATORY PAIN OR CHRONIC

2663
01:33:03,040 --> 01:33:06,520
PAIN, WE CAN GIVE THEM THIS

2664
01:33:06,520 --> 01:33:08,840
DATASET AND DE-RISKING THEIR

2665
01:33:08,840 --> 01:33:09,480
DECISION-MAKING OF WHETHER OR

2666
01:33:09,480 --> 01:33:11,760
NOT THEY WANT TO PURSUE THIS

2667
01:33:11,760 --> 01:33:16,400
ASSET IN PAIN.

2668
01:33:16,400 --> 01:33:17,640
UP TO THIS POINT, WE'VE BEEN

2669
01:33:17,640 --> 01:33:19,520
TALKING ABOUT VALIDATING

2670
01:33:19,520 --> 01:33:20,680
TARGETS, SMALL MOLECULES AND

2671
01:33:20,680 --> 01:33:22,480
BIOLOGICS.

2672
01:33:22,480 --> 01:33:25,120
THIS PARTICULAR SLIDE SUMMARIZES

2673
01:33:25,120 --> 01:33:28,520
THE DEVICE PROGRAMS FOR

2674
01:33:28,520 --> 01:33:29,680
DEVELOPING TREATMENTS FOR PAIN

2675
01:33:29,680 --> 01:33:31,280
INSIDE THE HEAL INITIATIVE.

2676
01:33:31,280 --> 01:33:33,480
AND WE TAKE ADVANTAGE OF

2677
01:33:33,480 --> 01:33:35,520
NIH-WIDE PROGRAMS SUCH AS THE

2678
01:33:35,520 --> 01:33:36,520
BLUEPRINT MED TECH PROGRAM.

2679
01:33:36,520 --> 01:33:39,400
WE ALSO HAVE HAD AN R-18 PROGRAM

2680
01:33:39,400 --> 01:33:42,560
FOR DEVELOPING EARLY STAGE

2681
01:33:42,560 --> 01:33:44,760
TECHNOLOGIES TO ADVANCE DEVICES

2682
01:33:44,760 --> 01:33:46,520
FOR TREATING PAIN.

2683
01:33:46,520 --> 01:33:48,280
THERE'S A LONG HISTORY OF

2684
01:33:48,280 --> 01:33:50,360
DEVICES FOR THE TREATMENT OF

2685
01:33:50,360 --> 01:33:51,000
PAIN.

2686
01:33:51,000 --> 01:33:52,360
SPINAL CORD STIMULATORS HAVE

2687
01:33:52,360 --> 01:33:54,000
BEEN AROUND FOR A LONG TIME.

2688
01:33:54,000 --> 01:33:55,640
TENS UNITS, I'M SURE YOU'VE

2689
01:33:55,640 --> 01:33:59,680
HEARD OF THEM IN THE PAST, FOR

2690
01:33:59,680 --> 01:34:00,920
STIMULATING PERIPHERAL NERVES

2691
01:34:00,920 --> 01:34:02,360
FOR TREATING PAIN.

2692
01:34:02,360 --> 01:34:08,880
IN SOME CASES, NON-IN NONINVASI.

2693
01:34:08,880 --> 01:34:11,120
THERE'S VAGUS NERVE STIMULATORS

2694
01:34:11,120 --> 01:34:15,320
ON THE EAR, THE NECK, THE

2695
01:34:15,320 --> 01:34:16,720
PERIPHERAL NERVE IN THE ARM --

2696
01:34:16,720 --> 01:34:17,480
ET CETERA.

2697
01:34:17,480 --> 01:34:19,520
WE'VE EVEN DEVELOPED A PROGRAM

2698
01:34:19,520 --> 01:34:22,560
TO UNDERSTAND THE MECHANISM OF

2699
01:34:22,560 --> 01:34:25,600
THESE FDA-CLEARED DEVICES IN

2700
01:34:25,600 --> 01:34:29,240
ORDER TO ALLOW US TO DEVELOP

2701
01:34:29,240 --> 01:34:33,840
MORE EFFICACIOUS ONES AND BETTER

2702
01:34:33,840 --> 01:34:35,040
IDENTIFY WHICH PATIENTS CAN

2703
01:34:35,040 --> 01:34:35,840
BENEFIT FROM THEM.

2704
01:34:35,840 --> 01:34:37,280
SO WE HAVE SIX DEVELOPMENT

2705
01:34:37,280 --> 01:34:39,040
PROJECTS IN THE DEVICE SPACE

2706
01:34:39,040 --> 01:34:41,480
CURRENTLY ONGOING.

2707
01:34:41,480 --> 01:34:42,960
EIGHT CLINICAL TRANSLATION

2708
01:34:42,960 --> 01:34:43,240
PROJECTS.

2709
01:34:43,240 --> 01:34:45,600
THE AND SIX EARLY FEASIBILITY

2710
01:34:45,600 --> 01:34:46,400
CLINICAL TRIALS.

2711
01:34:46,400 --> 01:34:48,640
IN ADDITION TO THAT, WE'VE HAD

2712
01:34:48,640 --> 01:34:50,120
FIVE FDA IDEs DEVELOPED

2713
01:34:50,120 --> 01:34:52,880
THROUGH THE PROGRAM, TWO ONGOING

2714
01:34:52,880 --> 01:34:54,400
MECHANISTIC TRIALS, AND THREE

2715
01:34:54,400 --> 01:34:58,680
AWARDS THROUGH THAT SMALL --

2716
01:34:58,680 --> 01:35:00,160
PROGRAM AND 14 OF THEM IN

2717
01:35:00,160 --> 01:35:00,480
ACADEMIA.

2718
01:35:00,480 --> 01:35:02,280
SO WE'RE REALLY EXCITED ABOUT

2719
01:35:02,280 --> 01:35:04,320
THIS PROGRAM, YOU CAN SEE ON THE

2720
01:35:04,320 --> 01:35:05,520
RIGHT SIDE ON THE BOTTOM THERE

2721
01:35:05,520 --> 01:35:07,040
SOME OF THE DIFFERENT PAIN

2722
01:35:07,040 --> 01:35:08,160
SYNDROMES THAT ARE INCLUDED, NOT

2723
01:35:08,160 --> 01:35:09,440
JUST THE STANDARD LOW BACK PAIN

2724
01:35:09,440 --> 01:35:11,680
BUT LIKE I MENTIONED ALSO, SOME

2725
01:35:11,680 --> 01:35:18,280
OF THE UNDER D- UNDERSTUDIED PAN

2726
01:35:18,280 --> 01:35:20,280
CONDITIONS, IRRITABLE BOWEL

2727
01:35:20,280 --> 01:35:23,440
SYNDROME, NEUROPATHIC PAIN, VERY

2728
01:35:23,440 --> 01:35:27,800
IMPORTANT, AND REFRACK TRILL

2729
01:35:27,800 --> 01:35:29,440
CHRONIC PAIN, DEEP BRAIN

2730
01:35:29,440 --> 01:35:30,240
STIMULATION.

2731
01:35:30,240 --> 01:35:32,560
THIS SLIDE IS JUST TO SUMMARIZE

2732
01:35:32,560 --> 01:35:35,200
THE DISTRIBUTION OF ACADEMIA AND

2733
01:35:35,200 --> 01:35:38,680
INDUSTRY THAT WE SEE PURSUING

2734
01:35:38,680 --> 01:35:40,040
THE DIFFERENT INITIATIVES THAT

2735
01:35:40,040 --> 01:35:40,800
WE'VE PUT OUT.

2736
01:35:40,800 --> 01:35:43,200
AS YOU CAN IMAGINE, DISCOVERY

2737
01:35:43,200 --> 01:35:45,040
AND VALIDATION IS ALL ACADEMIA.

2738
01:35:45,040 --> 01:35:48,640
BUT WE HAVE ABOUT A 70/30 SPLIT

2739
01:35:48,640 --> 01:35:51,040
WHEN IT COMES TO THERAPEUTIC

2740
01:35:51,040 --> 01:35:55,040
DEVELOPMENT FOR SMALL KNOLL MOLS

2741
01:35:55,040 --> 01:36:00,240
AND BIOLOGICS, AND THE PSP

2742
01:36:00,240 --> 01:36:01,440
PROGRAM -- BY DEFINITION,

2743
01:36:01,440 --> 01:36:02,360
THEY'VE BEEN ALL COMPANIES.

2744
01:36:02,360 --> 01:36:04,560
SO HEAL IS REALLY LOOKING AT A

2745
01:36:04,560 --> 01:36:05,400
COMPREHENSIVE WAY TO MAKE SURE

2746
01:36:05,400 --> 01:36:07,600
THAT THESE DISCOVERIES WE'RE

2747
01:36:07,600 --> 01:36:08,640
MAKING AT THE EARLY STAGE HAVE

2748
01:36:08,640 --> 01:36:11,240
THE POTENTIAL TO MAKE TO

2749
01:36:11,240 --> 01:36:21,560
COMMERCIALIZATION.

2750
01:36:22,600 --> 01:36:24,520
I'M GOING TO SWITCH GEARS AS I

2751
01:36:24,520 --> 01:36:27,280
TRANSITION TO HANDING IT OVER TO

2752
01:36:27,280 --> 01:36:29,920
LINDA PORTER, AND THAT IS TO

2753
01:36:29,920 --> 01:36:32,040
DISCUSS WORKFORCE DEVELOPMENT.

2754
01:36:32,040 --> 01:36:36,520
WE KNOW THAT IN ORDER TO GET NEW

2755
01:36:36,520 --> 01:36:40,120
IDEAS INTO THIS SPACE, TO GET

2756
01:36:40,120 --> 01:36:41,880
CREATIVE IDEAS, WE HAVE TO

2757
01:36:41,880 --> 01:36:43,240
SUPPORT A DIVERSE WORKFORCE.

2758
01:36:43,240 --> 01:36:44,440
AND AT THIS POINT, ONE OF THE

2759
01:36:44,440 --> 01:36:46,080
WAYS WE DO THAT IN THE HEAL

2760
01:36:46,080 --> 01:36:47,440
INITIATIVE IS THROUGH

2761
01:36:47,440 --> 01:36:51,000
SUPPLEMENTS TO THE ONGOING

2762
01:36:51,000 --> 01:36:52,360
PROJECTS.

2763
01:36:52,360 --> 01:36:53,880
AT THIS POINT, SINCE 2019, WHEN

2764
01:36:53,880 --> 01:36:56,480
THE PROGRAM WAS LAUNCHED, WE

2765
01:36:56,480 --> 01:36:58,120
SUPPORTED 30 DIVERSE INDIVIDUALS

2766
01:36:58,120 --> 01:36:59,440
TO THESE PROGRAMS, AND THAT'S

2767
01:36:59,440 --> 01:37:01,520
SOMETHING WE'RE REALLY PROUD.

2768
01:37:01,520 --> 01:37:04,160
THE VAST MAJORITIES ARE -- WELL,

2769
01:37:04,160 --> 01:37:06,360
ABOUT HALF OF THEM ARE PH.D.

2770
01:37:06,360 --> 01:37:09,760
STUDENTS, AND THE OTHER HALF ARE

2771
01:37:09,760 --> 01:37:12,280
EARLY STAGE INVESTIGATORS, MANY

2772
01:37:12,280 --> 01:37:15,160
OF THEM IN EARLY STAGE OF THEIR

2773
01:37:15,160 --> 01:37:19,400
ACADEMIC APPOINTMENT.

2774
01:37:19,400 --> 01:37:23,040
ANOTHER WAY THAT WE SUPPORT THE

2775
01:37:23,040 --> 01:37:27,640
WORKFORCE IS THROUGH THE K-99R0H

2776
01:37:27,640 --> 01:37:29,240
DR. KOROSHETZ MENTIONED IN HIS

2777
01:37:29,240 --> 01:37:29,760
INTRO REMARKS.

2778
01:37:29,760 --> 01:37:31,080
THIS IS REALLY IMPORTANT FOR

2779
01:37:31,080 --> 01:37:31,840
GETTING PEOPLE TO TRANSITION

2780
01:37:31,840 --> 01:37:33,120
INTO THE FIELD AND TO STAY INTO

2781
01:37:33,120 --> 01:37:33,400
THE FIELD.

2782
01:37:33,400 --> 01:37:38,880
WE HAVE A STANDARD AND A

2783
01:37:38,880 --> 01:37:45,280
DIVERSITY VAR YAITIO VARIATION O

2784
01:37:45,280 --> 01:37:46,720
TAKE INDEPENDENT BASIC SCIENCE

2785
01:37:46,720 --> 01:37:48,040
STUDIES OR CLINICAL STUDIES OR

2786
01:37:48,040 --> 01:37:50,200
THOSE WHO WANT TO DO THOSE TYPE

2787
01:37:50,200 --> 01:37:52,440
OF RESEARCH AND SUPPORT THEM

2788
01:37:52,440 --> 01:37:53,920
FROM THERE FROM THEIR MENTORED

2789
01:37:53,920 --> 01:37:55,240
STAGE INTO THE UNMENTORED STAGE

2790
01:37:55,240 --> 01:37:58,600
OF THEIR CAREER.

2791
01:37:58,600 --> 01:38:00,040
SO THIS IS PROBABLY THE MOST

2792
01:38:00,040 --> 01:38:00,480
IMPORTANT SLIDE.

2793
01:38:00,480 --> 01:38:02,040
ON THE LEFT SIDE WE HAVE THE

2794
01:38:02,040 --> 01:38:03,120
INITIATIVE LEADS, AND THEN WE

2795
01:38:03,120 --> 01:38:04,680
HAVE THE TEAM MEMBERS ON THE

2796
01:38:04,680 --> 01:38:05,920
RIGHT, AND I HAVE TO TELL YOU,

2797
01:38:05,920 --> 01:38:08,760
NOT EVERYBODY IS MENTIONED HERE.

2798
01:38:08,760 --> 01:38:11,360
OF COURSE IT INCLUDES THE VAST

2799
01:38:11,360 --> 01:38:12,440
MAJORITY OF THE PROGRAM PEOPLE,

2800
01:38:12,440 --> 01:38:13,960
BUT IT DOESN'T INCLUDE THE

2801
01:38:13,960 --> 01:38:15,480
REVIEW BRANCH, WHICH PLAYS A

2802
01:38:15,480 --> 01:38:17,400
TREMENDOUS ROLE HERE, AS WELL AS

2803
01:38:17,400 --> 01:38:18,920
GMB, AND SENIOR LEADERSHIP AND

2804
01:38:18,920 --> 01:38:21,880
ACROSS MANY, MANY DIFFERENT

2805
01:38:21,880 --> 01:38:24,400
INSTITUTES YOU SEE LISTED HERE.

2806
01:38:24,400 --> 01:38:26,040
BUT THAT MIDDLE COLUMN, THE LAST

2807
01:38:26,040 --> 01:38:28,960
TWO YOU SEE THERE, DR. ELIZABETH

2808
01:38:28,960 --> 01:38:33,240
SYPEK AND DR. RACHEL WEINBERG

2809
01:38:33,240 --> 01:38:35,360
ARE THE HPSs IN THE

2810
01:38:35,360 --> 01:38:36,360
PRE-CLINICAL PAIN OFFICE THAT

2811
01:38:36,360 --> 01:38:37,680
ARE REALLY THE GLUE FOR ALL OF

2812
01:38:37,680 --> 01:38:40,440
THESE PROGRAMS AND MAKE THEM

2813
01:38:40,440 --> 01:38:41,320
SUCCESSFUL.

2814
01:38:41,320 --> 01:38:44,160
SO THANKS FOR EVERYBODY ON THE

2815
01:38:44,160 --> 01:38:45,400
TEAM AND THANKS FOR THE

2816
01:38:45,400 --> 01:38:46,400
OPPORTUNITY TO EXPLAIN THESE

2817
01:38:46,400 --> 01:38:56,200
PROGRAMS TO YOU.

2818
01:38:56,200 --> 01:39:00,360
>>LINDA, CLINICAL
RESEARCH.

2819
01:39:00,360 --> 01:39:01,880
>>THANK YOU FOR SUCH A
NICE

2820
01:39:01,880 --> 01:39:03,640
LEAD-IN TO THE CLINICAL

2821
01:39:03,640 --> 01:39:04,160
COMPONENTS.

2822
01:39:04,160 --> 01:39:06,280
COULD WE GO TO THE NEXT SLIDE?

2823
01:39:06,280 --> 01:39:11,280
BEFORE I START, I WOULD LIKE TO

2824
01:39:11,280 --> 01:39:13,960
PAY RECOGNITION TO RON DUBNER,

2825
01:39:13,960 --> 01:39:16,320
WHO WAS A REALLY VALUABLE,

2826
01:39:16,320 --> 01:39:17,080
INNOVATIVE PIONEER IN PAIN

2827
01:39:17,080 --> 01:39:17,640
RESEARCH.

2828
01:39:17,640 --> 01:39:20,240
HE PASSED AWAY LAST WEEK.

2829
01:39:20,240 --> 01:39:24,960
AND SO TO MENTION HIS

2830
01:39:24,960 --> 01:39:25,560
ACCOMPLISHMENTS AND

2831
01:39:25,560 --> 01:39:26,320
CONTRIBUTIONS I THINK WOULD TAKE

2832
01:39:26,320 --> 01:39:27,600
AN HOUR, BUT I DID WANT TO

2833
01:39:27,600 --> 01:39:29,040
MENTION QUICKLY THAT HE STARTED

2834
01:39:29,040 --> 01:39:32,160
HIS CAREER AT NIH AND SPENT MOST

2835
01:39:32,160 --> 01:39:35,240
OF HIS CAREER HERE, STARTED AS A

2836
01:39:35,240 --> 01:39:36,840
STAFF DENTIST IN THE CLINICAL

2837
01:39:36,840 --> 01:39:39,520
CENTER, AND MOVED ALL THE WAY UP

2838
01:39:39,520 --> 01:39:41,120
TO LEADING WHAT TURNED OUT TO BE

2839
01:39:41,120 --> 01:39:43,040
A REALLY, REALLY INFLUENTIAL

2840
01:39:43,040 --> 01:39:45,400
PAIN RESEARCH PROGRAM IN THE

2841
01:39:45,400 --> 01:39:47,680
INTRAMURAL SIDE OF THE NATIONAL

2842
01:39:47,680 --> 01:39:53,280
INSTITUTE ON DENTAL RESEARCH.

2843
01:39:53,280 --> 01:39:57,080
SO RON'S CONTRIBUTIONS PROBABLY

2844
01:39:57,080 --> 01:39:59,560
HAVE MADE PART OF THE BASIS FOR

2845
01:39:59,560 --> 01:40:02,000
WHAT WE KNOW NOW TO HAVE BEEN

2846
01:40:02,000 --> 01:40:02,840
ABLE TO MOVE THE SCIENCE

2847
01:40:02,840 --> 01:40:03,280
FORWARD.

2848
01:40:03,280 --> 01:40:04,280
SO WITH THAT, OUR TIME IS

2849
01:40:04,280 --> 01:40:05,520
LIMITED SO IF I CAN GO TO THE

2850
01:40:05,520 --> 01:40:09,800
NEXT SLIDE, PLEASE.

2851
01:40:09,800 --> 01:40:11,600
AS SORT OF A PREVIEW WHY THIS IS

2852
01:40:11,600 --> 01:40:12,680
SO IMPORTANT FROM THE PUBLIC

2853
01:40:12,680 --> 01:40:15,320
HEALTH SIDE, I HAVE A LITTLE BIT

2854
01:40:15,320 --> 01:40:16,800
OF DATA THAT I WANT TO SHARE AND

2855
01:40:16,800 --> 01:40:18,880
GIVE YOU A SENSE OF JUST HOW BIG

2856
01:40:18,880 --> 01:40:22,280
THE PUBLIC HEALTH CRISIS THAT

2857
01:40:22,280 --> 01:40:23,680
MICHAEL MENTIONED REALLY IS.

2858
01:40:23,680 --> 01:40:25,160
SO WE KNOW THAT 50 MILLION

2859
01:40:25,160 --> 01:40:27,240
ADULTS LIVE WITH CHRONIC PAIN,

2860
01:40:27,240 --> 01:40:29,880
DEFINED AS PAIN THAT WAS MOST OR

2861
01:40:29,880 --> 01:40:31,200
ALL DAYS IN THE LAST THREE

2862
01:40:31,200 --> 01:40:33,000
MONTHS.

2863
01:40:33,000 --> 01:40:34,520
HALF OF THOSE HAVE SEVERE PAIN

2864
01:40:34,520 --> 01:40:35,800
EVERY DAY AND A LARGE PORTION OF

2865
01:40:35,800 --> 01:40:40,680
THEM HAVE HIGH IMPACT CHRONIC

2866
01:40:40,680 --> 01:40:42,120
PAIN, DEFINED AS PAIN THAT

2867
01:40:42,120 --> 01:40:45,280
AFFECTS THEIR LIFE.

2868
01:40:45,280 --> 01:40:46,680
INCLUDING ACTIVITIES OF DAILY

2869
01:40:46,680 --> 01:40:47,800
LIVING, SOCIAL ENGAGEMENT AND

2870
01:40:47,800 --> 01:40:48,720
WHETHER OR NOT THEY CAN GO TO

2871
01:40:48,720 --> 01:40:50,120
WORK, SCHOOL, ET CETERA.

2872
01:40:50,120 --> 01:40:51,920
MORE WOMEN THAN MEN, SLIGHTLY

2873
01:40:51,920 --> 01:40:55,880
HIGHER PREVALENCE, HAVE CHRONIC

2874
01:40:55,880 --> 01:40:57,760
AND -- IMPACT CHRONIC PAIN AND

2875
01:40:57,760 --> 01:41:00,720
RURAL MORE THAN URBAN DWELLERS

2876
01:41:00,720 --> 01:41:01,960
REPORT CHRONIC PAIN AND HIGH

2877
01:41:01,960 --> 01:41:02,920
IMPACT CHRONIC PAIN, PROBABLY

2878
01:41:02,920 --> 01:41:05,000
BECAUSE OF ACCESS DIFFICULTY TO

2879
01:41:05,000 --> 01:41:07,880
REALLY QUALITY HEALTHCARE.

2880
01:41:07,880 --> 01:41:09,280
IF YOU LOOK AT THE UPPER

2881
01:41:09,280 --> 01:41:12,640
RIGHT-HAND SIDE, WE KNOW THAT

2882
01:41:12,640 --> 01:41:15,160
PEOPLE WHO HAVE OTHER PAIN --

2883
01:41:15,160 --> 01:41:18,520
OTHER CHRONIC CONDITIONS THAT

2884
01:41:18,520 --> 01:41:22,560
REALLY ARE SEVERE, OFTEN ARE

2885
01:41:22,560 --> 01:41:24,920
ALSO HAVING CHRONIC PAIN OR HIGH

2886
01:41:24,920 --> 01:41:26,360
IMPACT CHRONIC PAIN ASSOCIATED

2887
01:41:26,360 --> 01:41:27,000
WITH THAT.

2888
01:41:27,000 --> 01:41:31,040
THIS IS AN ODDS RATIO CHART, AND

2889
01:41:31,040 --> 01:41:32,080
FOR SOME OF THOSE CONDITIONS AND

2890
01:41:32,080 --> 01:41:33,080
SOME OF THE PEOPLE WHO HAVE

2891
01:41:33,080 --> 01:41:35,720
THOSE CONDITIONS, PAIN IS THEIR

2892
01:41:35,720 --> 01:41:39,240
BIGGEST CONCERN AND COMPLAINT.

2893
01:41:39,240 --> 01:41:42,000
AS WE ALL EITHER KNOW OR ARE

2894
01:41:42,000 --> 01:41:44,600
LEARNING, PAIN INCREASES IN

2895
01:41:44,600 --> 01:41:47,640
PREVALENCE WITH AGE.

2896
01:41:47,640 --> 01:41:49,360
SO I'M GOING TO PICK UP WHERE

2897
01:41:49,360 --> 01:41:53,000
MICHAEL LEFT OFF AT THE BOTTOM

2898
01:41:53,000 --> 01:41:53,520
OF THIS.

2899
01:41:53,520 --> 01:41:54,720
THE CHEVRON IS SLIGHTLY

2900
01:41:54,720 --> 01:41:55,680
DIFFERENT COLORS ON THIS SLIDE,

2901
01:41:55,680 --> 01:41:57,400
BUT IT'S BASICALLY GIVING YOU AN

2902
01:41:57,400 --> 01:41:59,360
OUTLINE OF THE HEAL PROGRAMS IN

2903
01:41:59,360 --> 01:42:00,480
THE SAME WAY.

2904
01:42:00,480 --> 01:42:02,520
SO THE CLINICAL TEAM PICKS UP

2905
01:42:02,520 --> 01:42:06,960
WITH THE BIOMARKER PROGRAMS AND

2906
01:42:06,960 --> 01:42:08,840
MOVES FROM THERE ON THE CHEVRON

2907
01:42:08,840 --> 01:42:11,520
TO THE BIG LARGE BACKPACK OR THE

2908
01:42:11,520 --> 01:42:17,320
BACK PAIN CONSORTIUM, AND THEN

2909
01:42:17,320 --> 01:42:22,840
WE HAVE THREE CLINICAL NETWORKS,

2910
01:42:22,840 --> 01:42:33,320
ONE IS EPPIC NET, ONE IS THE

2911
01:42:33,720 --> 01:42:34,720
PRAGMATIC TRIALS, EFFECTIVENESS

2912
01:42:34,720 --> 01:42:35,600
AND IMPLEMENTATION.

2913
01:42:35,600 --> 01:42:37,040
I SKIPPED OVER THE HOPE KIDNEY

2914
01:42:37,040 --> 01:42:37,440
DISEASE TRIAL.

2915
01:42:37,440 --> 01:42:39,760
THAT IS ONE LARGE NATIONWIDE

2916
01:42:39,760 --> 01:42:41,640
CLINICAL TRIAL THAT IS LOOKING

2917
01:42:41,640 --> 01:42:43,960
AT ALTERNATIVES TO OPIOIDS FOR

2918
01:42:43,960 --> 01:42:46,200
PEOPLE WHO ARE EXPERIENCING

2919
01:42:46,200 --> 01:42:47,840
SEVERE PAIN DURING KIDNEY

2920
01:42:47,840 --> 01:42:51,120
DIALYSIS, WHICH THEY NEED END

2921
01:42:51,120 --> 01:42:52,440
STAGE RENAL DISEASE.

2922
01:42:52,440 --> 01:42:54,040
AND THEN THERE ARE TWO NEW

2923
01:42:54,040 --> 01:42:55,440
PROGRAMS AT THE BOTTOM RIGHT

2924
01:42:55,440 --> 01:42:56,960
THAT JUST STARTED UP THIS YEAR.

2925
01:42:56,960 --> 01:43:02,080
THE HEALTH EQUITIES PROGRAM, AND

2926
01:43:02,080 --> 01:43:03,720
THE PAIN -- AND A PROGRAM TO

2927
01:43:03,720 --> 01:43:05,680
INTEGRATE CARE FOR THOSE WITH

2928
01:43:05,680 --> 01:43:07,960
PAIN AND OPIOID USE DISORDER OR

2929
01:43:07,960 --> 01:43:10,960
ARE AT RISK FOR OPIOID USE

2930
01:43:10,960 --> 01:43:11,800
DISORDER.

2931
01:43:11,800 --> 01:43:14,120
SO I'LL TELL YOU A LITTLE BIT OF

2932
01:43:14,120 --> 01:43:15,040
THE HIGHLIGHT AND SOME OF THE

2933
01:43:15,040 --> 01:43:16,160
PROGRAMS WE HAVE LISTED HERE,

2934
01:43:16,160 --> 01:43:17,560
AND THEN A LITTLE BIT MORE

2935
01:43:17,560 --> 01:43:18,440
DETAIL ON THE NEW PROGRAMS

2936
01:43:18,440 --> 01:43:21,240
BECAUSE THE ADVISORY COMM COMMIE

2937
01:43:21,240 --> 01:43:22,600
HASN'T HEARD ABOUT THEM YET.

2938
01:43:22,600 --> 01:43:24,320
HEAL IS ALSO DOING SOME REALLY

2939
01:43:24,320 --> 01:43:25,000
IMPORTANT CROSS-CUTTING WORK

2940
01:43:25,000 --> 01:43:27,600
THAT INCLUDES EFFORTS THAT WILL

2941
01:43:27,600 --> 01:43:30,040
HELP ALL OF THESE PROGRAMS.

2942
01:43:30,040 --> 01:43:31,360
ONE IS COMMUNITY ENGAGEMENT.

2943
01:43:31,360 --> 01:43:32,360
WE'LL TALK ABOUT THAT A LITTLE

2944
01:43:32,360 --> 01:43:33,480
BIT MORE.

2945
01:43:33,480 --> 01:43:35,080
WORKFORCE ENHANCEMENT ON THE

2946
01:43:35,080 --> 01:43:37,240
CLINICAL PAIN RESEARCH SIDE ALSO

2947
01:43:37,240 --> 01:43:39,880
HAS SOME NEW PROGRAMS IN

2948
01:43:39,880 --> 01:43:41,280
ADDITION TO THOSE THAT MICHAEL

2949
01:43:41,280 --> 01:43:41,600
MENTIONED.

2950
01:43:41,600 --> 01:43:43,640
WE'RE WORKING TOWARD ENHANCING

2951
01:43:43,640 --> 01:43:45,600
THE DIVERSITY OF THE CLINICAL

2952
01:43:45,600 --> 01:43:47,360
COHORT AS WELL AS THE WORKFORCE.

2953
01:43:47,360 --> 01:43:49,560
DATA HARMONIZATION HAS BEEN A

2954
01:43:49,560 --> 01:43:53,000
BIG HUGE EFFORT ACROSS ALL THESE

2955
01:43:53,000 --> 01:43:54,080
HEAL CLINICAL TRIALS IN BOTH

2956
01:43:54,080 --> 01:43:57,600
PAIN AND OUD TO MAKE SURE THAT

2957
01:43:57,600 --> 01:44:01,040
THE DATA ARE HARMONIZED AND

2958
01:44:01,040 --> 01:44:01,840
TRANSLATABLE ONCE THE STUDIES

2959
01:44:01,840 --> 01:44:06,080
HAVE BEEN FINISHED.

2960
01:44:06,080 --> 01:44:08,480
SO IN THE NEXT SLIDE, I WANT TO

2961
01:44:08,480 --> 01:44:10,320
START A LITTLE BIT OF THE

2962
01:44:10,320 --> 01:44:11,720
EVOLUTION OF THE BIOMARKER

2963
01:44:11,720 --> 01:44:11,960
PROGRAM.

2964
01:44:11,960 --> 01:44:15,400
THE EARLY PROGRAM WAS LED BY

2965
01:44:15,400 --> 01:44:19,360
MARYANN PELAMONTER.

2966
01:44:19,360 --> 01:44:21,720
WE FUNDED EIGHT AWARDS, LOOKING

2967
01:44:21,720 --> 01:44:24,440
AT PROGR PROGNOSTIC, SEVEN PROGC

2968
01:44:24,440 --> 01:44:25,680
AND ONE DIAGNOSTIC BIOMARKER

2969
01:44:25,680 --> 01:44:27,920
THAT WOULD BE IN THE DEVELOPMENT

2970
01:44:27,920 --> 01:44:29,760
AND VALIDATION STAGES TO HELP

2971
01:44:29,760 --> 01:44:30,920
MONITOR DISEASE PROGRESSION OR

2972
01:44:30,920 --> 01:44:32,720
DIAGNOSIS OF A PARTICULAR PAIN

2973
01:44:32,720 --> 01:44:33,240
CONDITION.

2974
01:44:33,240 --> 01:44:35,480
SO THESE COVER EIGHT DIFFERENT

2975
01:44:35,480 --> 01:44:37,440
PAIN CONDITIONS, AND THEY WILL

2976
01:44:37,440 --> 01:44:40,520
BE MOVING INTO THEIR CLINICAL

2977
01:44:40,520 --> 01:44:41,040
VALIDATION STAGE --

2978
01:44:41,040 --> 01:44:43,040
>>WE JUST LOST YOUR
SOUND.

2979
01:44:43,040 --> 01:44:47,600
>>UH-OH.

2980
01:44:47,600 --> 01:44:50,000
>>WE DIDN'T LOSE HER
SOUND.

2981
01:44:50,000 --> 01:44:51,360
WALTER, WE DIDN'T LOSE HER

2982
01:44:51,360 --> 01:44:51,560
SOUND.

2983
01:44:51,560 --> 01:44:53,120
>>WE CAN HEAR HER VERY
WELL.

2984
01:44:53,120 --> 01:44:57,520
>>IT'S A PROBLEM IN YOUR

2985
01:44:57,520 --> 01:44:57,800
HEADPHONES.

2986
01:44:57,800 --> 01:44:59,480
>>CAN MOST OF YOU HEAR
ME?

2987
01:44:59,480 --> 01:45:00,600
>>YES.

2988
01:45:00,600 --> 01:45:02,600
KEEP GOING.

2989
01:45:02,600 --> 01:45:03,120
>>ALL RIGHT.

2990
01:45:03,120 --> 01:45:04,680
SO I WILL KEEP GOING.

2991
01:45:04,680 --> 01:45:06,760
AND HOPEFULLY WALTER WILL GET

2992
01:45:06,760 --> 01:45:09,560
SOUND BACK.

2993
01:45:09,560 --> 01:45:11,880
THE PROGRAM WAS REALIGNED BASED

2994
01:45:11,880 --> 01:45:13,600
ON THE RECOGNITION THAT WE

2995
01:45:13,600 --> 01:45:15,960
REALLY ALSO NEEDED BIOMARKERS

2996
01:45:15,960 --> 01:45:18,040
THAT COULD BE MORE CLOSELY

2997
01:45:18,040 --> 01:45:20,920
ALIGNED WITH EARLY -- ESPECIALLY

2998
01:45:20,920 --> 01:45:22,800
EARLY CLINICAL TRIALS, EARLY

2999
01:45:22,800 --> 01:45:25,200
PHASED, BUT BE USED IN ALL

3000
01:45:25,200 --> 01:45:26,560
CLINICAL TRIALS TO FACILITATE

3001
01:45:26,560 --> 01:45:28,000
AND IMPROVE THE OUTCOMES OF THE

3002
01:45:28,000 --> 01:45:29,200
TRIAL.

3003
01:45:29,200 --> 01:45:31,600
SO THE NEW PROGRAM WAS DEVELOPED

3004
01:45:31,600 --> 01:45:39,920
AND IS LED BY RAM ARUDSHONDRUM

3005
01:45:39,920 --> 01:45:41,440
AND IT IS CALLING FOR

3006
01:45:41,440 --> 01:45:43,080
APPLICATIONS THAT WOULD LOOK FOR

3007
01:45:43,080 --> 01:45:44,800
DEVELOPMENT AND VALIDATION OF

3008
01:45:44,800 --> 01:45:45,560
BIOMARKERS THAT WOULD BE

3009
01:45:45,560 --> 01:45:47,000
PREDICTIVE AND ABLE TO MON OR

3010
01:45:47,000 --> 01:45:47,880
TREATMENT RESPONSES.

3011
01:45:47,880 --> 01:45:50,480
SO WE COULD THEN STRATIFY

3012
01:45:50,480 --> 01:45:53,960
PATIENTS BETTER INTO CLINICAL

3013
01:45:53,960 --> 01:45:56,040
TRIALS FOR A MORE LIKELY

3014
01:45:56,040 --> 01:45:57,000
FEASIBLE OUT COME FROM THOSE

3015
01:45:57,000 --> 01:45:57,560
TRIALS.

3016
01:45:57,560 --> 01:45:59,160
AND A NEW PROGRAM JUST LAUNCHED

3017
01:45:59,160 --> 01:46:00,920
THIS YEAR IS TO LOOK AT

3018
01:46:00,920 --> 01:46:02,360
BIOMARKERS IN MYOFASCIAL

3019
01:46:02,360 --> 01:46:03,800
TISSUES.

3020
01:46:03,800 --> 01:46:05,240
MYOFASCIAL TISSUES WOULD INCLUDE

3021
01:46:05,240 --> 01:46:06,680
MUSCLE FASCIA AND OTHER

3022
01:46:06,680 --> 01:46:08,760
ASSOCIATED TISSUES FOR WHICH

3023
01:46:08,760 --> 01:46:13,440
MEANL PAIN CONDITIONS ARE LIKELY

3024
01:46:13,440 --> 01:46:14,480
TO HAVE A CONTRIBUTION FROM

3025
01:46:14,480 --> 01:46:15,840
THESE PARTICULAR TISSUES,

3026
01:46:15,840 --> 01:46:18,480
ESPECIALLY THOSE WITH HIGH

3027
01:46:18,480 --> 01:46:19,920
PREVALENCE, LIKE LOW BACK PAIN,

3028
01:46:19,920 --> 01:46:20,800
NECK PAIN, ET CETERA.

3029
01:46:20,800 --> 01:46:22,080
SO THIS PROGRAM IS LOOKING FOR

3030
01:46:22,080 --> 01:46:24,920
TOOLS, NEW TECHNOLOGIES THAT

3031
01:46:24,920 --> 01:46:28,720
COULD LOOK AT THE MECHANICAL

3032
01:46:28,720 --> 01:46:31,120
PROPERTIES, THE STRUCTURE AND

3033
01:46:31,120 --> 01:46:35,520
THE PHYSIOLOGICAL PROPERTIES OF

3034
01:46:35,520 --> 01:46:37,360
LATENT OR HEALTHY, IF YOU WILL,

3035
01:46:37,360 --> 01:46:38,400
MYOFASCIAL TISSUE AND ALSO BE

3036
01:46:38,400 --> 01:46:40,520
ABLE TO ASSESS CHANGES IN THOSE

3037
01:46:40,520 --> 01:46:42,800
TISSUES ONCE PAIN HAS SET IN.

3038
01:46:42,800 --> 01:46:44,720
SO SEVEN PROJECTS HAVE JUST

3039
01:46:44,720 --> 01:46:46,600
LAUNCHED HERE, AND WE HOPE THAT

3040
01:46:46,600 --> 01:46:49,240
THEY WILL ALL TRANSITION TO BE

3041
01:46:49,240 --> 01:46:52,800
SUCCESSFUL IN PHASE TWO.

3042
01:46:52,800 --> 01:46:53,800
THE NEXT SLIDE IS A LITTLE BIT

3043
01:46:53,800 --> 01:46:57,480
OF AN UPDATE ON THE BACKPACK

3044
01:46:57,480 --> 01:47:00,120
CONSORTIUM.

3045
01:47:00,120 --> 01:47:03,520
THE BAC PAC CONSORTIUM IS A

3046
01:47:03,520 --> 01:47:04,680
LARGE COMPREHENSIVE AND

3047
01:47:04,680 --> 01:47:05,320
COLLABORATIVE SET OF DIFFERENT

3048
01:47:05,320 --> 01:47:09,480
TYPES OF PROGRAMS THAT WOULD

3049
01:47:09,480 --> 01:47:13,040
FEED INTO DEVELOPMENT OF

3050
01:47:13,040 --> 01:47:17,200
DIAGNOSTIC TOOLS AND ALSO THE

3051
01:47:17,200 --> 01:47:19,760
BEST APPROACHES TO DEEP

3052
01:47:19,760 --> 01:47:20,760
PHENOTYPING PATIENTS WITH

3053
01:47:20,760 --> 01:47:22,800
DIFFERENT TYPES OF BACK PAIN IN

3054
01:47:22,800 --> 01:47:24,600
ORDER TO DEVELOP ALGORITHMS OF

3055
01:47:24,600 --> 01:47:28,160
HOW THOSE TOOLS CAN BE USED TO

3056
01:47:28,160 --> 01:47:29,120
PREDICT OPTIMAL TREATMENT FOR

3057
01:47:29,120 --> 01:47:30,760
PEOPLE WITH DIFFERENT KINDS OF

3058
01:47:30,760 --> 01:47:32,120
BACK PAIN, AND FOR THEIR OWN

3059
01:47:32,120 --> 01:47:33,120
INDIVIDUAL CHARACTERISTICS.

3060
01:47:33,120 --> 01:47:35,320
SO THE EXCITING FUSE HERE IS

3061
01:47:35,320 --> 01:47:37,080
THAT ALL THESE PIECES ARE

3062
01:47:37,080 --> 01:47:39,960
BEGINNING TO COME TOGETHER TO

3063
01:47:39,960 --> 01:47:41,960
THE BAC PAC IS LAUNCHING A TRIAL

3064
01:47:41,960 --> 01:47:44,400
CALLED THE BES TRIAL, BIOMARKERS

3065
01:47:44,400 --> 01:47:45,960
FOR EVALUATING SPINE TREATMENTS.

3066
01:47:45,960 --> 01:47:48,000
IT'S A SMART DESIGN TRIAL WHERE

3067
01:47:48,000 --> 01:47:50,400
400 PATIENTS ARE BEGINNING TO BE

3068
01:47:50,400 --> 01:47:54,320
ENROLLED IN ORDER TO TAKE THEIR

3069
01:47:54,320 --> 01:47:55,440
PARTICULAR PHENOTYPES, USE THE

3070
01:47:55,440 --> 01:47:58,560
TOOLS THAT WE'VE GOT FOR

3071
01:47:58,560 --> 01:47:59,960
ASSESSMENT, AND DIAGNOSTICS, AND

3072
01:47:59,960 --> 01:48:04,880
THEN RUN THEM THROUGH DIFFERENT

3073
01:48:04,880 --> 01:48:06,640
TREATMENTS THAT THEY COULD SORT

3074
01:48:06,640 --> 01:48:08,320
OF SEQUENTIALLY GO THROUGH

3075
01:48:08,320 --> 01:48:09,760
DIFFERENT TREATMENTS TO SEE WHAT

3076
01:48:09,760 --> 01:48:12,840
WORKS BEST FOR WHOM, AND

3077
01:48:12,840 --> 01:48:15,920
OTHERWISE REALLY DEVELOPING SOME

3078
01:48:15,920 --> 01:48:18,240
TAILORED PERSONALIZED TREATMENTS

3079
01:48:18,240 --> 01:48:19,280
FOR LOW BACK PAIN, WHICH HAS

3080
01:48:19,280 --> 01:48:21,920
BEEN A VERY CHALLENGING AREA OF

3081
01:48:21,920 --> 01:48:23,480
PAIN MANAGEMENT.

3082
01:48:23,480 --> 01:48:29,120
ON THE NEXT SLIDE, WE'LL GO TO

3083
01:48:29,120 --> 01:48:30,440
ONE OF OUR CLINICAL TRIAL

3084
01:48:30,440 --> 01:48:31,680
NETWORKS WHICH IS HOUSED AT

3085
01:48:31,680 --> 01:48:34,360
NINDS UNDER THE LEADERSHIP OF

3086
01:48:34,360 --> 01:48:36,200
BARBARA KARP AND HER TEAM, AND

3087
01:48:36,200 --> 01:48:40,120
THIS IS THE EPPIC NET OR THE

3088
01:48:40,120 --> 01:48:41,400
EARLY PHASE INVESTIGATIONAL

3089
01:48:41,400 --> 01:48:42,080
TRIAL NETWORK.

3090
01:48:42,080 --> 01:48:43,160
THIS IS FOR PHASE TWO TRIALS

3091
01:48:43,160 --> 01:48:44,920
WITH ASSETS THAT HAVE COME

3092
01:48:44,920 --> 01:48:47,520
THROUGH THEIR FOUR STAGES OF

3093
01:48:47,520 --> 01:48:50,680
REVIEW, AND ACTUALLY GOTTEN TO

3094
01:48:50,680 --> 01:48:52,080
THE POINT WHERE NIH HAS INVESTED

3095
01:48:52,080 --> 01:48:55,880
IN A TRIAL USING AN ASSET

3096
01:48:55,880 --> 01:48:57,120
SUBMITTED BY THE OUTSIDE

3097
01:48:57,120 --> 01:48:59,080
COMMUNITY AND WE ACTUALLY

3098
01:48:59,080 --> 01:49:00,840
DEVELOPED A PROTOCOL FOR THEM

3099
01:49:00,840 --> 01:49:04,840
WITH OUR INVESTIGATIVE TEAM, AND

3100
01:49:04,840 --> 01:49:09,520
RUN THAT TRIAL THROUGH THE

3101
01:49:09,520 --> 01:49:11,400
EPPICNET NETWORK, WHICH IS

3102
01:49:11,400 --> 01:49:12,320
NATIONWIDE.

3103
01:49:12,320 --> 01:49:16,520
SO ONE TRIAL, KNEE

3104
01:49:16,520 --> 01:49:17,840
OSTEOARTHRITIS, IS RECRUITING.

3105
01:49:17,840 --> 01:49:25,640
THIS IS USING A SELECTIVE

3106
01:49:25,640 --> 01:49:27,400
ANTAGONIST SO THE CHEMOKINE

3107
01:49:27,400 --> 01:49:30,800
PATHWAYS FOR NEOOSTEOARTHRITIS.

3108
01:49:30,800 --> 01:49:34,040
THE OTHER TRIAL FOR PAINFUL

3109
01:49:34,040 --> 01:49:35,360
DIABETIC NEUROPATHY, WE EXPECT

3110
01:49:35,360 --> 01:49:36,800
WE'LL HAVE MORE OF THESE TRIALS

3111
01:49:36,800 --> 01:49:38,480
IN THE LIFETIME OF EPIC NET SO

3112
01:49:38,480 --> 01:49:40,120
WE'RE USING A PLATFORM PROTOCOL

3113
01:49:40,120 --> 01:49:41,680
DEVELOPED BY OUR INVESTIGATORS

3114
01:49:41,680 --> 01:49:45,000
FOR THIS TYPE OF PAIN, AND THIS

3115
01:49:45,000 --> 01:49:46,320
ONE HAS JUST LAUNCHED AND IT

3116
01:49:46,320 --> 01:49:50,280
WILL BE LOOKING FOR A NATURAL

3117
01:49:50,280 --> 01:49:53,840
SMALL MOLECULE FROM A PLANT

3118
01:49:53,840 --> 01:49:58,880
BACTERIUM, AND WHICH THE THIS

3119
01:49:58,880 --> 01:50:00,600
MECHANISM IS NOT COMPLETELY

3120
01:50:00,600 --> 01:50:01,960
KNOWN BUT THAT HAS JUST

3121
01:50:01,960 --> 01:50:02,360
LAUNCHED.

3122
01:50:02,360 --> 01:50:04,160
SO EXCITING, THE NETWORK IS UP

3123
01:50:04,160 --> 01:50:05,440
AND RUNNING AND THAT THESE TWO

3124
01:50:05,440 --> 01:50:07,320
TRIALS ARE ACTUALLY IN

3125
01:50:07,320 --> 01:50:07,800
RECRUITMENT PHASES.

3126
01:50:07,800 --> 01:50:12,400
AND MY NEXT UPDATE IN THE NEXT

3127
01:50:12,400 --> 01:50:15,760
SLIDE IS ON THE COMPARATIVE

3128
01:50:15,760 --> 01:50:17,280
EFFECTIVENESS RESEARCH NETWORK,

3129
01:50:17,280 --> 01:50:20,000
WHICH WAS ESTABLISHED BY HEAL TO

3130
01:50:20,000 --> 01:50:21,200
RUN LARGE COMPARATIVE

3131
01:50:21,200 --> 01:50:24,520
EFFECTIVENESS RESEARCH TRIALS,

3132
01:50:24,520 --> 01:50:27,320
AND WE CURRENTLY HAVE FUNDED

3133
01:50:27,320 --> 01:50:29,080
EIGHT TRIALS, AND YOU CAN SEE

3134
01:50:29,080 --> 01:50:30,560
THAT THESE TRIALS HAPPEN IN

3135
01:50:30,560 --> 01:50:33,320
DIFFERENT SETTINGS, THEY ARE

3136
01:50:33,320 --> 01:50:34,600
OCCURRING IN POPULATIONS ACROSS

3137
01:50:34,600 --> 01:50:36,800
THE LIFESPAN, AND THEY ARE A

3138
01:50:36,800 --> 01:50:38,760
NUMBER OF TRIALS THAT LOOK AT

3139
01:50:38,760 --> 01:50:40,920
DIFFERENT PAIN CONDITIONS, AND

3140
01:50:40,920 --> 01:50:45,280
ARE USING EITHER OR BOTH OF

3141
01:50:45,280 --> 01:50:47,800
PHARMACOLOGICAL AND

3142
01:50:47,800 --> 01:50:48,240
NON-PHARMACOLOGICAL

3143
01:50:48,240 --> 01:50:50,880
INTERVENTIONS THAT ARE BEING

3144
01:50:50,880 --> 01:50:51,400
TESTED.

3145
01:50:51,400 --> 01:50:53,920
THE EXCITING NEWS ON THIS ONE IS

3146
01:50:53,920 --> 01:50:56,720
THAT DESPITE COVID AND ALL THE

3147
01:50:56,720 --> 01:50:58,920
SLOW-DOWNS, WE HAVE A TRIAL

3148
01:50:58,920 --> 01:51:04,720
LOOKING AT POSTOPERATIVE PAIN IN

3149
01:51:04,720 --> 01:51:06,000
C-SECTIONS, RECOGNIZING THE FACT

3150
01:51:06,000 --> 01:51:08,960
THAT 1 IN 300 C-SECTION MOMS GO

3151
01:51:08,960 --> 01:51:11,000
ON TO DEVELOP OPIOID USE

3152
01:51:11,000 --> 01:51:13,760
DISORDER BECAUSE OPIOID ARE VERY

3153
01:51:13,760 --> 01:51:16,480
TYPICALLY PRESCRIBED TO TAKE

3154
01:51:16,480 --> 01:51:17,800
HOME AFTER A C-SECTION.

3155
01:51:17,800 --> 01:51:21,480
SO THEY COMPLETED ENROLLMENT IN

3156
01:51:21,480 --> 01:51:23,840
TWO YEARS, AND WE'LL BE ACTUALLY

3157
01:51:23,840 --> 01:51:25,760
PRESENTING SOME DATA NEXT

3158
01:51:25,760 --> 01:51:27,600
WEEKEND -- NEXT WEEK, RATHER, IN

3159
01:51:27,600 --> 01:51:28,800
AN OPEN FORUM.

3160
01:51:28,800 --> 01:51:31,320
SO THE TRIAL REALLY MOVED ALONG

3161
01:51:31,320 --> 01:51:31,960
QUICKLY.

3162
01:51:31,960 --> 01:51:36,360
THE HOPE IS THAT GIVING THESE

3163
01:51:36,360 --> 01:51:39,080
MOTHERS ALTERNATIVES TO OPIOIDS

3164
01:51:39,080 --> 01:51:40,800
AFTER THE CESAREAN SECTION WILL

3165
01:51:40,800 --> 01:51:44,200
REDUCE THE NUMBER WHO GO ON TO

3166
01:51:44,200 --> 01:51:52,600
DEVELOP OPIOID USE DISORDER.

3167
01:51:52,600 --> 01:51:54,320
NEXT SLIDE WILL TELL YOU THE

3168
01:51:54,320 --> 01:51:56,640
OVERVAWOVERVIEW OF THE STUDIES E

3169
01:51:56,640 --> 01:51:59,520
INCLUDED IN OUR PRAGMATIC

3170
01:51:59,520 --> 01:52:01,200
IMPLEMENTATION TRIALS, AND THESE

3171
01:52:01,200 --> 01:52:04,800
ARE STILL ONGOING, STILL

3172
01:52:04,800 --> 01:52:06,760
ENROLLING, SO WE DON'T HAVE ANY

3173
01:52:06,760 --> 01:52:07,840
OUTCOMES REPORTS FOR YOU AT THIS

3174
01:52:07,840 --> 01:52:08,840
POINT, BUT THE IDEA HERE IS THAT

3175
01:52:08,840 --> 01:52:10,160
YOU CAN SEE WHAT PAIN CONDITIONS

3176
01:52:10,160 --> 01:52:13,080
ARE BEING STUDIED, AND WHAT

3177
01:52:13,080 --> 01:52:14,800
INTERVENTIONS ALL BEING

3178
01:52:14,800 --> 01:52:15,480
NON-PHARMACOLOGICAL, WHICH WAS

3179
01:52:15,480 --> 01:52:19,200
THE INTENT OF THE PROGRAM, IN

3180
01:52:19,200 --> 01:52:21,120
LARGE HEALTHCARE SYSTEMS IN A

3181
01:52:21,120 --> 01:52:23,320
REAL WORLD SETTING.

3182
01:52:23,320 --> 01:52:26,480
THE NEXT SLIDE, I'M GOING TO

3183
01:52:26,480 --> 01:52:27,960
SHIFT GEARS HERE A LITTLE BIT

3184
01:52:27,960 --> 01:52:30,040
AND THEN COME BACK BRIEFLY TO

3185
01:52:30,040 --> 01:52:33,040
THE NEW PROGRAMS THAT I

3186
01:52:33,040 --> 01:52:33,320
MENTIONED.

3187
01:52:33,320 --> 01:52:34,440
AND WHAT WE THOUGHT WAS

3188
01:52:34,440 --> 01:52:36,120
IMPORTANT WAS TO TAKE A CAREFUL

3189
01:52:36,120 --> 01:52:37,840
LOOK AT THE PORTFOLIO OF GRANTS

3190
01:52:37,840 --> 01:52:39,480
THAT WE ALREADY HAVE IN THE

3191
01:52:39,480 --> 01:52:43,400
CLINICAL PAIN MANAGEMENT REALM,

3192
01:52:43,400 --> 01:52:47,000
CLINICAL RESEARCH REALM HERE,

3193
01:52:47,000 --> 01:52:51,800
AND SO ANDERSONS AND ANTHONY

3194
01:52:51,800 --> 01:52:53,320
DOMINICALE FROM OUR OFFICE HERE

3195
01:52:53,320 --> 01:52:56,240
HAVE PULLED DATA FROM ALL OF THE

3196
01:52:56,240 --> 01:52:58,240
CLINICAL TRIALS AND LONGITUDAL

3197
01:52:58,240 --> 01:53:00,680
STUDIES ACROSS HEAL FOR PAIN,

3198
01:53:00,680 --> 01:53:04,480
AND LOOKED AT WHAT PAIN

3199
01:53:04,480 --> 01:53:06,960
CONDITIONS ARE BEING STUDIED AND

3200
01:53:06,960 --> 01:53:08,880
AT WHAT FREQUENCY AS MEASURED

3201
01:53:08,880 --> 01:53:11,320
PER NUMBER OF GRANT.

3202
01:53:11,320 --> 01:53:13,520
AND SOME GRANTS WILL HAVE MORE

3203
01:53:13,520 --> 01:53:14,760
THAN ONE TRIAL EMBEDDED IN THEM,

3204
01:53:14,760 --> 01:53:19,360
BUT EACH TIME A PAIN CONDITION

3205
01:53:19,360 --> 01:53:21,600
IS MARKED HERE, IT'S ONLY MARKED

3206
01:53:21,600 --> 01:53:22,160
ONCE.

3207
01:53:22,160 --> 01:53:23,760
SO FOR EXAMPLE, BACK PAIN IS NOT

3208
01:53:23,760 --> 01:53:24,600
INCLUDED IN CHRONIC PAIN, THESE

3209
01:53:24,600 --> 01:53:25,520
ARE SEPARATE APPLICATION.

3210
01:53:25,520 --> 01:53:26,920
YOU CAN SEE HERE THAT BACK PAIN

3211
01:53:26,920 --> 01:53:29,120
IS VERY WELL REPRESENTED ACROSS

3212
01:53:29,120 --> 01:53:30,440
THE HEAL PORTFOLIO, BUT THAT

3213
01:53:30,440 --> 01:53:32,280
MANY OTHER PAIN CONDITIONS ARE

3214
01:53:32,280 --> 01:53:34,280
BEING CONSIDERED EITHER FOR

3215
01:53:34,280 --> 01:53:35,880
BIOMARKER DEVELOPMENT OR FOR THE

3216
01:53:35,880 --> 01:53:38,400
MOST PART THESE ARE ALL CLINICAL

3217
01:53:38,400 --> 01:53:40,160
TRIALS, A FEW LONGITUDINAL

3218
01:53:40,160 --> 01:53:40,800
OBSERVATIONAL TRIALS ARE

3219
01:53:40,800 --> 01:53:44,320
INCLUDED IN THIS DATA.

3220
01:53:44,320 --> 01:53:47,040
THE NEXT SLIDE IS A LITTLE BIT

3221
01:53:47,040 --> 01:53:48,560
MORE INFORMATION ON THE ANALYSIS

3222
01:53:48,560 --> 01:53:51,360
THAT THEY DID, LOOKING AT THE

3223
01:53:51,360 --> 01:53:57,960
KINDS OF INTERVENTIONS THAT ARE

3224
01:53:57,960 --> 01:53:59,200
BEING TESTED IN THESE CLINICAL

3225
01:53:59,200 --> 01:53:59,440
TRIALS.

3226
01:53:59,440 --> 01:54:01,120
AND THESE ARE SUBCATEGORIES THAT

3227
01:54:01,120 --> 01:54:01,880
WERE COMBINED.

3228
01:54:01,880 --> 01:54:03,640
SO FOR EXAMPLE, THE BEHAVIORAL

3229
01:54:03,640 --> 01:54:05,480
HEALTH LINE WHICH IS HIGHLY

3230
01:54:05,480 --> 01:54:07,000
PREDOMINANT ACROSS THE NUMBER OF

3231
01:54:07,000 --> 01:54:08,720
TRIALS AS BEING INCLUDED AS AN

3232
01:54:08,720 --> 01:54:09,600
INTERVENTION WOULD INCLUDE

3233
01:54:09,600 --> 01:54:11,800
THINGS LIKE COGNITIVE BEHAVIORAL

3234
01:54:11,800 --> 01:54:13,240
THERAPY, MINDFULNESS, EDUCATION

3235
01:54:13,240 --> 01:54:15,840
AND SO ON.

3236
01:54:15,840 --> 01:54:17,240
NON-INTERVENTION IS

3237
01:54:17,240 --> 01:54:19,200
REPRESENTATIVE MOSTLY OF THE

3238
01:54:19,200 --> 01:54:20,720
PHENOTYPIC FUNCTIONS IN THE

3239
01:54:20,720 --> 01:54:21,560
OBSERVATIONAL TRIALS.

3240
01:54:21,560 --> 01:54:26,040
AND THE LAST GRANT ON GRAPH ON T

3241
01:54:26,040 --> 01:54:27,160
HERE, WE KNOW PAIN CARE IS

3242
01:54:27,160 --> 01:54:28,360
DELIVERED IN DIFFERENT SETTINGS,

3243
01:54:28,360 --> 01:54:30,400
SO IT'S IMPORTANT TO KNOW THAT

3244
01:54:30,400 --> 01:54:34,880
OUR RESEARCH SETTINGS ARE

3245
01:54:34,880 --> 01:54:35,600
REPRESENTED -- REPRESENTATIVE OF

3246
01:54:35,600 --> 01:54:36,640
WHERE CARE IS BEING PROVIDED.

3247
01:54:36,640 --> 01:54:39,320
SO THIS GIVES US AND GIVES YOU A

3248
01:54:39,320 --> 01:54:41,480
SENSE OF WHERE THESE STUDIES ARE

3249
01:54:41,480 --> 01:54:43,680
HAPPENING IN DIFFERENT TYPES OF

3250
01:54:43,680 --> 01:54:45,560
SETTINGS AND WITHIN DIFFERENT

3251
01:54:45,560 --> 01:54:49,080
TYPES OF CLINICS, FOR EXAMPLE.

3252
01:54:49,080 --> 01:54:49,320
,

3253
01:54:49,320 --> 01:54:52,280
AS APPROPRIATE TO THE STUDY.

3254
01:54:52,280 --> 01:54:54,960
WE DUG A LITTLE BIT DEEPER INTO

3255
01:54:54,960 --> 01:54:55,680
BACK PAIN BECAUSE THAT'S ONE OF

3256
01:54:55,680 --> 01:54:57,160
THE MOST PREVALENT CONDITIONS IN

3257
01:54:57,160 --> 01:54:59,560
THE WORLD, 39% OF ADULT HAD BACK

3258
01:54:59,560 --> 01:55:01,280
PAIN IN THE LAST THREE MONTHS,

3259
01:55:01,280 --> 01:55:03,120
ACCORDING TO A U.S. SURVEY OF

3260
01:55:03,120 --> 01:55:05,440
ADULTS.

3261
01:55:05,440 --> 01:55:08,840
AND SO WA WE'VE OPENED UP THE

3262
01:55:08,840 --> 01:55:10,760
SUBCATEGORIES HERE AND LOOKED AT

3263
01:55:10,760 --> 01:55:16,880
WHERE BACK PAIN STUDIES ARE

3264
01:55:16,880 --> 01:55:18,080
HAPPENING, SO THAT'S OUR STUDY

3265
01:55:18,080 --> 01:55:19,520
SETTING AND IT INCLUDES A NUMBER

3266
01:55:19,520 --> 01:55:20,560
OF DIFFERENT AND APPROPRIATE

3267
01:55:20,560 --> 01:55:22,040
HEALTHCARE SETTINGS THAT RUN

3268
01:55:22,040 --> 01:55:26,080
FROM TELEHEALTH ALL THE WAY TO

3269
01:55:26,080 --> 01:55:27,800
HEALTH SYSTEMS, COULD BE

3270
01:55:27,800 --> 01:55:29,680
INPATIENT CARE, INCLUDING

3271
01:55:29,680 --> 01:55:31,280
FEDERALLY QUALIFIED HEALTHCARE

3272
01:55:31,280 --> 01:55:35,640
SETTINGS WHICH TYPICALLY SERVICE

3273
01:55:35,640 --> 01:55:38,000
PEOPLE WHO DEAL WITH HEALTH

3274
01:55:38,000 --> 01:55:38,840
DISPARITY.

3275
01:55:38,840 --> 01:55:40,440
INTERVENTIONS AS YOU CAN SEE ON

3276
01:55:40,440 --> 01:55:43,080
THE RIGHT-HAND SIDE ARE BROAD,

3277
01:55:43,080 --> 01:55:44,640
AND SO A LOT OF DIFFERENT THINGS

3278
01:55:44,640 --> 01:55:48,800
ARE BEING LOOKED AT, IN PART

3279
01:55:48,800 --> 01:55:50,080
THROUGH THE BAC PAC PROGRAM BUT

3280
01:55:50,080 --> 01:55:51,600
ALSO THROUGH OTHER PARTS OF THE

3281
01:55:51,600 --> 01:55:53,480
HEAL CLINICAL PAIN MANAGEMENT

3282
01:55:53,480 --> 01:55:53,800
PROGRAM.

3283
01:55:53,800 --> 01:55:57,520
ON THE NEXT SLIDE ASKS THE

3284
01:55:57,520 --> 01:56:00,880
QUESTION, AND THIS IS WHY I HELD

3285
01:56:00,880 --> 01:56:02,320
OFF ON TELLING YOU WHAT THE NEW

3286
01:56:02,320 --> 01:56:03,960
PROGRAMS ARE ABOUT, THEY HELP US

3287
01:56:03,960 --> 01:56:05,120
TO ANSWER SOME OF THESE

3288
01:56:05,120 --> 01:56:05,600
QUESTIONS.

3289
01:56:05,600 --> 01:56:07,320
SO WHY IS PAIN MANAGEMENT SO

3290
01:56:07,320 --> 01:56:09,040
CHALLENGING?

3291
01:56:09,040 --> 01:56:12,000
FIRST OFF, REIMBURSEMENT IS

3292
01:56:12,000 --> 01:56:13,520
OFTEN DIFFICULT TO GET,

3293
01:56:13,520 --> 01:56:16,240
ESPECIALLY FOR CHRONIC PAIN OVER

3294
01:56:16,240 --> 01:56:17,240
TIME.

3295
01:56:17,240 --> 01:56:21,160
CMS IS MAKING MAJOR CHANGES IN

3296
01:56:21,160 --> 01:56:23,560
THEIR MEDICARE REIMBURSEMENT

3297
01:56:23,560 --> 01:56:26,840
STRATEGIES IN GIVING CHRONIC

3298
01:56:26,840 --> 01:56:31,520
PAIN SORT OF A LONGER PERIOD OF

3299
01:56:31,520 --> 01:56:33,320
REIMBURSEMENT AND A BROADER

3300
01:56:33,320 --> 01:56:34,720
ACCESS TO DIFFERENT TYPES OF

3301
01:56:34,720 --> 01:56:37,240
CARE THAT WOULD FALL UNDER NEEDS

3302
01:56:37,240 --> 01:56:38,760
FOR PEOPLE WITH CHRONIC PAIN.

3303
01:56:38,760 --> 01:56:40,920
SO THAT'S PRETTY EXCITING.

3304
01:56:40,920 --> 01:56:43,800
ACCESS TO CARE, WE ARE LOOKING

3305
01:56:43,800 --> 01:56:45,400
AT THE DEMOGRAPHICS OF WHERE

3306
01:56:45,400 --> 01:56:46,840
THESE STUDIES HAPPEN.

3307
01:56:46,840 --> 01:56:48,040
SOME OF THE ONES THAT ARE

3308
01:56:48,040 --> 01:56:50,000
ONGOING ARE TARGETED TO RURAL

3309
01:56:50,000 --> 01:56:50,560
AREAS.

3310
01:56:50,560 --> 01:56:52,240
THERE'S A NEW PROGRAM THAT WILL

3311
01:56:52,240 --> 01:56:55,080
BE FUNDED IN 2023 BUT IT HAS NOT

3312
01:56:55,080 --> 01:57:00,440
YET, LOOKING AT GRANTS

3313
01:57:00,440 --> 01:57:01,760
SPECIFICALLY TRYING TO IMPROVE

3314
01:57:01,760 --> 01:57:04,920
PAIN MANAGEMENT IN RURAL

3315
01:57:04,920 --> 01:57:07,440
POPULATIONS.

3316
01:57:07,440 --> 01:57:08,440
DISPARITIES, WE'LL COME TO THE

3317
01:57:08,440 --> 01:57:10,280
HEALTH EQUITIES PROGRAM IN A FEW

3318
01:57:10,280 --> 01:57:11,720
MINUTES, BUT BIAS AND A STIGMA

3319
01:57:11,720 --> 01:57:12,480
ARE OFTEN PART OF THE REASON

3320
01:57:12,480 --> 01:57:13,560
THAT PEOPLE WHO EXPERIENCE

3321
01:57:13,560 --> 01:57:15,200
HEALTH DISPARITIES DON'T GET

3322
01:57:15,200 --> 01:57:18,640
GOOD PAIN CARE.

3323
01:57:18,640 --> 01:57:20,640
TRAINING AND MENTORING, I THINK

3324
01:57:20,640 --> 01:57:23,560
MICHAEL GAVE YOU A REALLY CLEAR

3325
01:57:23,560 --> 01:57:25,080
SENSE OF -- AND WALTER'S

3326
01:57:25,080 --> 01:57:26,200
PRESENTATION OF WHY WE NEED

3327
01:57:26,200 --> 01:57:28,840
BETTER TRAINING, BETTER

3328
01:57:28,840 --> 01:57:30,320
MENTORING EXPERIENCE TO GET

3329
01:57:30,320 --> 01:57:32,320
PEOPLE AT EARLIER CAREER STAGES

3330
01:57:32,320 --> 01:57:36,120
TO COME IN AND STAY IN PAIN

3331
01:57:36,120 --> 01:57:36,920
RESEARCH.

3332
01:57:36,920 --> 01:57:38,320
COMPLEXITY OF PAIN IS CLEAR.

3333
01:57:38,320 --> 01:57:40,520
WE HAVE OTHER CHRONIC

3334
01:57:40,520 --> 01:57:41,720
CONDITIONS, SOMETIMES MULTIPLE

3335
01:57:41,720 --> 01:57:44,760
PAIN CONDITIONS, DIFFERENT

3336
01:57:44,760 --> 01:57:47,720
PATHWAYS, MECHANISMS FOR PAIN

3337
01:57:47,720 --> 01:57:51,080
MAKES RESEARCH AND CLINICAL

3338
01:57:51,080 --> 01:57:52,680
APPROACHES EVEN MORE DIFFICULT,

3339
01:57:52,680 --> 01:57:54,800
I THINK TO SOME EXTENT THE BACK

3340
01:57:54,800 --> 01:57:56,240
PAIN TRIALS ARE GOING TO HELP

3341
01:57:56,240 --> 01:58:00,360
WITH THIS A BIT AS FAR AS

3342
01:58:00,360 --> 01:58:02,880
DEVELOPING PERSONALIZED MEDICINE

3343
01:58:02,880 --> 01:58:05,280
TECHNIQUES.

3344
01:58:05,280 --> 01:58:06,920
LIFESPAN, AGE CHANGES, HOW WE

3345
01:58:06,920 --> 01:58:10,720
EXPERIENCE PAIN AND HOW PAIN IS

3346
01:58:10,720 --> 01:58:12,280
ACTUALLY MANIFESTED OVER TIME.

3347
01:58:12,280 --> 01:58:16,840
AND THE NEXT SLIDE, WE HAVE SORT

3348
01:58:16,840 --> 01:58:19,600
OF THE SAME PROBLEM AREAS

3349
01:58:19,600 --> 01:58:20,160
LISTED.

3350
01:58:20,160 --> 01:58:28,440
THE COMPLEXITY OF PAIN IS --

3351
01:58:28,440 --> 01:58:30,680
CO-OCCURRING CONDITIONS.

3352
01:58:30,680 --> 01:58:32,120
HEALTH DISPARITIES, OUR HEALTH

3353
01:58:32,120 --> 01:58:33,200
EQUITIES PROGRAM WILL BEGIN TO

3354
01:58:33,200 --> 01:58:34,080
ADDRESS THAT.

3355
01:58:34,080 --> 01:58:35,560
TRAINING AND MENTORING,

3356
01:58:35,560 --> 01:58:36,480
WORKFORCE, I'LL TALK ABOUT IN A

3357
01:58:36,480 --> 01:58:37,120
FEW MINUTES.

3358
01:58:37,120 --> 01:58:38,880
AND I'VE ALREADY MENTIONED

3359
01:58:38,880 --> 01:58:40,640
ACCESS TO CARE WITH THE RURAL

3360
01:58:40,640 --> 01:58:42,920
HEALTH PROGRAM COMING UP, AND

3361
01:58:42,920 --> 01:58:44,640
REIMBURSEMENT WITH CMS BEING A

3362
01:58:44,640 --> 01:58:48,920
HUGE CONTRIBUTOR HE HERE TO

3363
01:58:48,920 --> 01:58:49,440
IMPROVING THE SITUATION.

3364
01:58:49,440 --> 01:58:51,640
SO THE NEXT SLIDE TELLS YOU A

3365
01:58:51,640 --> 01:58:54,800
LITTLE BIT, TINY BIT, ABOUT THE

3366
01:58:54,800 --> 01:58:56,760
PROGRAM LOOKING AT INTEGRATIVE

3367
01:58:56,760 --> 01:58:59,400
CARE FOR PEOPLE WHO HAVE CHRONIC

3368
01:58:59,400 --> 01:59:02,240
PAIN AND OUD OR ARE AT RISK FOR

3369
01:59:02,240 --> 01:59:03,760
OUD BECAUSE OF THE OPIOIDS THAT

3370
01:59:03,760 --> 01:59:05,040
THEY'VE BEEN USING OR THE TIME

3371
01:59:05,040 --> 01:59:06,240
FRAME THEY'VE BEEN USING THEM,

3372
01:59:06,240 --> 01:59:09,880
ET CETERA, ET CETERA.

3373
01:59:09,880 --> 01:59:12,240
AND SO WE HAVE FUNDED FIVE

3374
01:59:12,240 --> 01:59:14,480
AWARDS IN THIS REALM, THERE'S A

3375
01:59:14,480 --> 01:59:17,360
SECOND ROUND COMING OUT, WE HOPE

3376
01:59:17,360 --> 01:59:18,920
THIS SUMMER, THAT'S UNDER REVIEW

3377
01:59:18,920 --> 01:59:20,040
THAT WILL ADD TO THIS PART OF

3378
01:59:20,040 --> 01:59:21,760
THE PORTFOLIO.

3379
01:59:21,760 --> 01:59:22,920
AND ON THE RIGHT IS A LITTLE BIT

3380
01:59:22,920 --> 01:59:25,160
OF DETAIL FROM OUR PORTFOLIO

3381
01:59:25,160 --> 01:59:27,360
ANALYSIS THAT SHOWS YOU THE

3382
01:59:27,360 --> 01:59:28,880
POPULATIONS THAT WOULD BE

3383
01:59:28,880 --> 01:59:31,720
INCLUDED IN THESE STUDIES.

3384
01:59:31,720 --> 01:59:33,120
SO THERE ARE MORE POPULATIONS

3385
01:59:33,120 --> 01:59:34,760
HERE THAN THERE ARE TRIALS.

3386
01:59:34,760 --> 01:59:36,240
BECAUSE EACH OF THESE AWARDS HAS

3387
01:59:36,240 --> 01:59:37,280
MULTIPLE TRIALS EMBEDDED IN THE

3388
01:59:37,280 --> 01:59:41,320
AWARD.

3389
01:59:41,320 --> 01:59:42,520
SO FOR SOME OF THESE, PATIENTS

3390
01:59:42,520 --> 01:59:44,400
WHO COME IN TO THE STUDY HAVE TO

3391
01:59:44,400 --> 01:59:48,680
BE ON MEDICATION-ASSISTIVE

3392
01:59:48,680 --> 01:59:51,520
TREATMENT FOR OUD OR BE AT RISK

3393
01:59:51,520 --> 01:59:53,800
FOR OUD, SO THEY MAY BE ON

3394
01:59:53,800 --> 01:59:56,360
OPIOID, FOR EXAMPLE, AND SO THE

3395
01:59:56,360 --> 01:59:58,720
INTERVENTIONS HERE ARE, I THINK,

3396
01:59:58,720 --> 02:00:01,000
BOTH PHARMACOLOGICAL AND

3397
02:00:01,000 --> 02:00:02,800
NON-PHARMACOLOGICAL, AND I THINK

3398
02:00:02,800 --> 02:00:03,760
APPROPRIATELY TARGETED TO THE

3399
02:00:03,760 --> 02:00:05,240
DIFFERENT POPULATIONS THAT ARE

3400
02:00:05,240 --> 02:00:07,760
COMING IN THROUGH THIS SET OF

3401
02:00:07,760 --> 02:00:08,200
STUDIES.

3402
02:00:08,200 --> 02:00:12,920
A LOT OF THESE ARE BEHAVIORAL,

3403
02:00:12,920 --> 02:00:15,200
AND ARE BEING -- PARTLY BECAUSE

3404
02:00:15,200 --> 02:00:17,480
THEY CAN BE ADMINISTERED IN THE

3405
02:00:17,480 --> 02:00:19,440
SETTINGS WHERE THE PATIENT

3406
02:00:19,440 --> 02:00:21,640
COHORT IS FOUND, FOR EXAMPLE,

3407
02:00:21,640 --> 02:00:24,800
THROUGH OUD CLINICS OR PRIMARY

3408
02:00:24,800 --> 02:00:28,960
CARE, THE V.A. IS SUPPORTING ONE

3409
02:00:28,960 --> 02:00:30,760
OF THESE TRIALS.

3410
02:00:30,760 --> 02:00:33,000
SO THIS IS AN AREA WHERE PAIN

3411
02:00:33,000 --> 02:00:35,200
COMPLEXITY MAKES MANAGEMENT

3412
02:00:35,200 --> 02:00:36,960
VERY, VERY DIFFICULT, AND WE

3413
02:00:36,960 --> 02:00:38,160
HOPE TO GET SOME GOOD ANSWERS

3414
02:00:38,160 --> 02:00:39,160
FROM THIS ONE.

3415
02:00:39,160 --> 02:00:43,800
ON THE NEXT SLIDE IS A LAST ONE

3416
02:00:43,800 --> 02:00:44,840
ON THE NEW PROGRAMS, NEW

3417
02:00:44,840 --> 02:00:47,240
RESEARCH PROGRAMS, THAT IS

3418
02:00:47,240 --> 02:00:49,080
DEALING WITH HEALTH DISPARITIES

3419
02:00:49,080 --> 02:00:51,400
IN PEOPLE WHO HAVE PAIN OR PAIN

3420
02:00:51,400 --> 02:00:58,920
WITH CO-OCCURRING HEALTH

3421
02:00:58,920 --> 02:01:01,120
CONDITIONS C.

3422
02:01:01,120 --> 02:01:02,720
FOR MOST OF THESE, THE TARGET IS

3423
02:01:02,720 --> 02:01:03,960
MENTAL HEALTH, ANXIETY,

3424
02:01:03,960 --> 02:01:04,720
DEPRESSION, ET CETERA, AND MOST

3425
02:01:04,720 --> 02:01:06,680
OF THESE STUDIES THAT ARE

3426
02:01:06,680 --> 02:01:07,880
DEALING WITH PAIN AND

3427
02:01:07,880 --> 02:01:12,000
CO-OCCURRING HEALTH CONDITIONS.

3428
02:01:12,000 --> 02:01:13,880
SO BIAS AND STIGMA CAN HAPPEN AT

3429
02:01:13,880 --> 02:01:15,200
A NUMBER OF DIFFERENT LEVELS,

3430
02:01:15,200 --> 02:01:18,680
AND WHAT WE WANTED TO DO THROUGH

3431
02:01:18,680 --> 02:01:24,160
THIS PROGRAM, WHICH IS WRUN BY

3432
02:01:24,160 --> 02:01:28,680
SHARISE SRINKAR AT NINDS, IS

3433
02:01:28,680 --> 02:01:31,080
INCLUDE DIFFERENT LEVELS OF

3434
02:01:31,080 --> 02:01:32,120
RESEARCH IN THESE AWARDS THAT

3435
02:01:32,120 --> 02:01:36,200
CAN HELP TO REDUCE STIGMA AND

3436
02:01:36,200 --> 02:01:39,800
BIAS, EITHER AT THE

3437
02:01:39,800 --> 02:01:40,440
PROVIDER-PATIENT LEVEL OR ALL

3438
02:01:40,440 --> 02:01:41,800
THE WAY UP TO THE SYSTEMS LEVEL

3439
02:01:41,800 --> 02:01:44,400
WHERE THERE MAY BE BIAS AT THE

3440
02:01:44,400 --> 02:01:47,640
SYSTEMS LEVEL THAT IS KEEPING

3441
02:01:47,640 --> 02:01:48,640
FOLKS FROM GETTING APPROPRIATE

3442
02:01:48,640 --> 02:01:49,120
PAIN CARE.

3443
02:01:49,120 --> 02:01:51,840
SO THE POPULATION ON THE FAR

3444
02:01:51,840 --> 02:01:53,360
LEFT COLUMN, I THINK GIVES YOU A

3445
02:01:53,360 --> 02:01:57,760
GOOD IDEA THAT THERE'S A BROAD

3446
02:01:57,760 --> 02:01:59,040
RANGE OF POPULATIONS THAT

3447
02:01:59,040 --> 02:01:59,840
EXPERIENCE HEALTH DISPARITIES

3448
02:01:59,840 --> 02:02:03,440
INCLUDED IN THIS PART OF THE

3449
02:02:03,440 --> 02:02:05,360
PORTFOLIO, AND PT PAIN

3450
02:02:05,360 --> 02:02:06,560
CONDITIONS ARE LISTED IN THE

3451
02:02:06,560 --> 02:02:09,360
ORANGORANGEY ONE, THE ORANGEY C,

3452
02:02:09,360 --> 02:02:10,760
AND AGAIN, A LARGE RANGE OF

3453
02:02:10,760 --> 02:02:13,480
DIFFERENT TYPES OF PAIN WILL BE

3454
02:02:13,480 --> 02:02:13,800
STUDIED.

3455
02:02:13,800 --> 02:02:16,200
AND THE INTERVENTIONS HERE

3456
02:02:16,200 --> 02:02:20,160
INCLUDE A LOT OF SELF MANAGEMENT

3457
02:02:20,160 --> 02:02:24,000
AT THE PATIENT PROVIDER LEVEL,

3458
02:02:24,000 --> 02:02:25,640
SOME IS COACHED, AND ALL ARE

3459
02:02:25,640 --> 02:02:27,400
CULTURALLY ADAPTED FOR THE

3460
02:02:27,400 --> 02:02:30,320
POPULATION OF STUDY, AND SOME OF

3461
02:02:30,320 --> 02:02:37,320
THESE ARE ALSO ADOPTIVE AT THE

3462
02:02:37,320 --> 02:02:38,000
SYSTEMS HEALTHCARE LEVEL, WHICH

3463
02:02:38,000 --> 02:02:40,160
IS THE LAST COLUMN ON HERE.

3464
02:02:40,160 --> 02:02:42,480
AGAIN, THE SETTINGS ARE

3465
02:02:42,480 --> 02:02:44,240
APPROPRIATE TO THE STUDY AND TO

3466
02:02:44,240 --> 02:02:46,400
THE POPULATION BEING STUDIED.

3467
02:02:46,400 --> 02:02:48,480
AND THEN THE NEXT SLIDE GIVES

3468
02:02:48,480 --> 02:02:52,760
YOU A REALLY QUICK OVERVIEW OF

3469
02:02:52,760 --> 02:02:54,440
WHAT THE APPROACH IS TO

3470
02:02:54,440 --> 02:02:58,640
ENHANCING THE CLINICAL PAIN

3471
02:02:58,640 --> 02:03:00,520
RESEARCH WORKFORCE, AND SO I

3472
02:03:00,520 --> 02:03:05,240
THINK THERE'S A PARTICULAR NEED

3473
02:03:05,240 --> 02:03:05,440
HERE.

3474
02:03:05,440 --> 02:03:08,280
A LOT OF FOLKS IN THIS AREA ARE

3475
02:03:08,280 --> 02:03:09,280
RETIRING OR AREN'T REALLY HAVING

3476
02:03:09,280 --> 02:03:12,400
THE TIME TO MENTOR ANYMORE, SO A

3477
02:03:12,400 --> 02:03:13,480
LOT OF DIFFERENT PROGRAMS TO

3478
02:03:13,480 --> 02:03:17,680
BEEF UP THE WORKFORCE, SOME I

3479
02:03:17,680 --> 02:03:19,880
THINK ARE REALLY NOVEL AND

3480
02:03:19,880 --> 02:03:20,840
INNOVATIVE.

3481
02:03:20,840 --> 02:03:22,280
WE'VE GOT SUPPLEMENTS TO SUPPORT

3482
02:03:22,280 --> 02:03:23,680
EARLY CAREER TRAINEES AND WE'VE

3483
02:03:23,680 --> 02:03:27,680
GOT AWARDS TO PROTECT MENTORS'

3484
02:03:27,680 --> 02:03:28,960
TIME TO DEVOTE TO MENTORING,

3485
02:03:28,960 --> 02:03:33,240
THAT'S THE K-24, AND TWO LINKED

3486
02:03:33,240 --> 02:03:34,800
NEW PROGRAMS, WHICH WE'RE REALLY

3487
02:03:34,800 --> 02:03:38,480
EXCITED ABOUT, A K12 WHICH IS A

3488
02:03:38,480 --> 02:03:39,920
TRAINING PROGRAM FOR EARLY

3489
02:03:39,920 --> 02:03:43,360
CAREER STAGE INVESTIGATORS

3490
02:03:43,360 --> 02:03:45,240
HOUSED AT UNIVERSITY OF MRI, BUT

3491
02:03:45,240 --> 02:03:49,840
ITMICHIGAN, BUT IT WILL TAKE IN

3492
02:03:49,840 --> 02:03:50,800
TRAINEES ACROSS THE NATION.

3493
02:03:50,800 --> 02:03:52,280
SO IT WILL BE NOT ONLY MICHIGAN

3494
02:03:52,280 --> 02:03:54,120
FOLKS BUT WILL BE NATION-WIDE,

3495
02:03:54,120 --> 02:03:57,960
AND THEY ARE LINKED AND WORKING

3496
02:03:57,960 --> 02:04:01,840
CLOSELY WITH THE R-24 AWARDEES,

3497
02:04:01,840 --> 02:04:05,800
WHICH IS A COORDINATING CENTER

3498
02:04:05,800 --> 02:04:06,800
FOR -- ACTUALLY THIS ONE IS

3499
02:04:06,800 --> 02:04:07,360
REALLY EXCITING.

3500
02:04:07,360 --> 02:04:08,640
IT A COORDINATING CENTER THAT

3501
02:04:08,640 --> 02:04:10,280
WILL SET UP A PLATFORM OR HAS

3502
02:04:10,280 --> 02:04:16,640
SET UP A PLATFORM FOR NIH,

3503
02:04:16,640 --> 02:04:19,320
BEYOND HEAL, NIH AWARDEES AT THE

3504
02:04:19,320 --> 02:04:21,240
EARLY CAREER STAGE OF

3505
02:04:21,240 --> 02:04:23,200
DEVELOPMENT TO GATHER AT AN

3506
02:04:23,200 --> 02:04:25,600
ANNUAL MEETING -- SORRY, THE

3507
02:04:25,600 --> 02:04:26,960
PLATFORM WILL BE FOR THEM TO

3508
02:04:26,960 --> 02:04:29,120
NETWORK, TO MEET PEOPLE, TO

3509
02:04:29,120 --> 02:04:30,440
COLLABORATE, TO LEARN, TRAINING

3510
02:04:30,440 --> 02:04:32,640
RESOURCES, ET CETERA, ET CETERA,

3511
02:04:32,640 --> 02:04:33,440
DEVELOPED TOGETHER WITH THE

3512
02:04:33,440 --> 02:04:35,280
UNIVERSITY OF MICHIGAN.

3513
02:04:35,280 --> 02:04:42,600
AND THESE TWO PROGRAMS ARE RUN

3514
02:04:42,600 --> 02:04:43,600
BY -- THE ADD IN MY OPINION

3515
02:04:43,600 --> 02:04:45,680
SUPPLEMENTS ARE RUN BY REBECCA

3516
02:04:45,680 --> 02:04:46,120
HUMMER.

3517
02:04:46,120 --> 02:04:47,320
AND WE'RE HOPING TO BEGIN TO

3518
02:04:47,320 --> 02:04:49,520
TARGET EARLIER STAGES OF

3519
02:04:49,520 --> 02:04:50,240
TRAINEES WITH SOME OF OUR

3520
02:04:50,240 --> 02:04:52,200
PROGRAMS AT THE POSTDOC LEVEL.

3521
02:04:52,200 --> 02:04:58,880
AND THEN THE LAST SLIDE IS --

3522
02:04:58,880 --> 02:05:01,440
IT'S A SMALL SLIDE ABOUT A

3523
02:05:01,440 --> 02:05:03,400
REALLY, REALLY BIG EFFORT ON THE

3524
02:05:03,400 --> 02:05:08,200
PART OF HEAL TO ENGAGE THE

3525
02:05:08,200 --> 02:05:09,720
COMMUNITY AND HOW WE MAKE -- WE

3526
02:05:09,720 --> 02:05:12,920
CAN MAKE OUR CLINICAL STUDIES

3527
02:05:12,920 --> 02:05:14,880
MORE MEANINGFUL TO THE PEOPLE

3528
02:05:14,880 --> 02:05:16,880
WHO THOSE STUDIES ARE BEING DONE

3529
02:05:16,880 --> 02:05:18,080
TO SUPPORT.

3530
02:05:18,080 --> 02:05:20,120
AND SO WE HAVE A HEAL COMMUNITY

3531
02:05:20,120 --> 02:05:23,400
PARTNER COMMITTEE THAT IS --

3532
02:05:23,400 --> 02:05:26,800
THAT INCLUDES PEOPLE WITH LIVED

3533
02:05:26,800 --> 02:05:28,640
EXPERIENCE OF OPIOID USE

3534
02:05:28,640 --> 02:05:29,960
DISORDER, SUBSTANCE USE

3535
02:05:29,960 --> 02:05:31,600
DISORDER, CHRONIC PAIN AND/OR

3536
02:05:31,600 --> 02:05:34,440
BOTH, AND FAMILY MEMBERS AND

3537
02:05:34,440 --> 02:05:35,440
COMMUNITY ADVOCATES IN THAT

3538
02:05:35,440 --> 02:05:37,080
PARTICULAR AREA.

3539
02:05:37,080 --> 02:05:40,920
AND THEIR JOB IS REALLY TO HELP

3540
02:05:40,920 --> 02:05:44,520
US SET UP TRIALS THAT INCLUDE

3541
02:05:44,520 --> 02:05:46,920
THE VOICES OF THESE PEOPLE AND

3542
02:05:46,920 --> 02:05:50,080
MAKE THEM MORE MEANINGFUL, SO

3543
02:05:50,080 --> 02:05:52,080
THE PICTURE ON THE RIGHT IS

3544
02:05:52,080 --> 02:05:53,280
MEANT TO REPRESENT THE NEED OF

3545
02:05:53,280 --> 02:05:55,120
THE INVESTIGATORS WHO ARE

3546
02:05:55,120 --> 02:05:59,200
RUNNING THESE TRIALS TO HAVE

3547
02:05:59,200 --> 02:06:00,880
INPUT FROM THE OUTSIDE

3548
02:06:00,880 --> 02:06:03,920
COMMUNITY, IF YOU WILL, OUR

3549
02:06:03,920 --> 02:06:04,880
COMMUNITY, INTEGRATE THEM INTO

3550
02:06:04,880 --> 02:06:08,280
THEIR VOICES, AND THEIR IDEAS

3551
02:06:08,280 --> 02:06:12,280
AND THEIR THOUGHTS INTO HOW WE

3552
02:06:12,280 --> 02:06:12,760
RUN THE TRIALS.

3553
02:06:12,760 --> 02:06:15,840
SO IT BEEN A REALLY, REALLY

3554
02:06:15,840 --> 02:06:16,840
WONDERFUL EXPERIENCE TO TALK

3555
02:06:16,840 --> 02:06:20,320
WITH THEM AND HEAR THEIR VOICES,

3556
02:06:20,320 --> 02:06:24,600
AND TO HELP IN WAYS SUCH AS HOW

3557
02:06:24,600 --> 02:06:28,000
WE WOULD WANT TO SUPPORT -- GIVE

3558
02:06:28,000 --> 02:06:30,640
MORE RESOURCES TO SUPPORT THE

3559
02:06:30,640 --> 02:06:35,000
HEAL AWARDEES IN ORDER TO MAKE

3560
02:06:35,000 --> 02:06:36,400
SURE THEY CAN DO A REALLY GOOD

3561
02:06:36,400 --> 02:06:37,960
JOB WITH COMMUNITY ENGAGEMENT

3562
02:06:37,960 --> 02:06:39,800
AND DIVERSITY OF THE POPULATION

3563
02:06:39,800 --> 02:06:41,240
AS THEY GO FORWARD WITH THE

3564
02:06:41,240 --> 02:06:44,080
TRIALS, AND PART OF THAT, WHAT

3565
02:06:44,080 --> 02:06:49,080
WE'VE DONE IN THE BACKGROUND, IS

3566
02:06:49,080 --> 02:06:50,440
AT A SUGGESTION OF THE HEAL

3567
02:06:50,440 --> 02:06:51,240
COMMUNITY PARTNER COMMITTEE, IS

3568
02:06:51,240 --> 02:06:54,920
TO DO A BROAD RESEARCH STRATEGY

3569
02:06:54,920 --> 02:06:59,520
ACROSS ALL THE HEAL

3570
02:06:59,520 --> 02:07:00,400
INVESTIGATORS TO UNDERSTAND WHAT

3571
02:07:00,400 --> 02:07:02,720
THEY ARE ALREADY DOING FOR

3572
02:07:02,720 --> 02:07:04,120
COMMUNITY ENGAGEMENT AND HOW WE

3573
02:07:04,120 --> 02:07:06,160
CAN USE THE INFORMATION RECEIVED

3574
02:07:06,160 --> 02:07:11,360
FROM THE SURVEY TO -- AS LESSONS

3575
02:07:11,360 --> 02:07:12,760
LEARNED FOR FOLKS WHO MAYBE

3576
02:07:12,760 --> 02:07:14,680
AREN'T DOING AS MUCH AS THEY

3577
02:07:14,680 --> 02:07:16,000
COULD, OR DON'T KNOW HOW TO DO

3578
02:07:16,000 --> 02:07:17,680
IT OR DON'T HAVE THE RESOURCES

3579
02:07:17,680 --> 02:07:20,480
TO DO IT.

3580
02:07:20,480 --> 02:07:21,800
SO I'M GOING TO SAY THANKS VERY

3581
02:07:21,800 --> 02:07:23,320
MUCH FOR THE TIME.

3582
02:07:23,320 --> 02:07:24,760
MICHAEL AND I, I THINK HAVE A

3583
02:07:24,760 --> 02:07:28,160
LITTLE BIT OF TIME FOR QUESTIONS

3584
02:07:28,160 --> 02:07:30,920
AND ANSWERS SO I'LL STOP THERE.

3585
02:07:30,920 --> 02:07:32,760
>>WE'RE QUITE BEHIND IN
TIME,

3586
02:07:32,760 --> 02:07:34,320
WHICH ISN'T YOUR FAULT OR

3587
02:07:34,320 --> 02:07:35,920
MICHAEL'S.

3588
02:07:35,920 --> 02:07:37,360
SO MAYBE WE'LL TAKE ONE OR TWO

3589
02:07:37,360 --> 02:07:38,560
URGENT QUESTIONS AND THEN PEOPLE

3590
02:07:38,560 --> 02:07:39,960
CAN ASK QUESTIONS IN THE CHAT

3591
02:07:39,960 --> 02:07:42,840
PERHAPS.

3592
02:07:42,840 --> 02:07:44,720
ARE THERE ANY QUESTIONS?

3593
02:07:44,720 --> 02:07:44,880
BOB?

3594
02:07:44,880 --> 02:07:46,000
>>THANK YOU.

3595
02:07:46,000 --> 02:07:46,920
GREAT PRESENTATIONS, VERY

3596
02:07:46,920 --> 02:07:49,200
IMPORTANT PROGRAM.

3597
02:07:49,200 --> 02:07:50,600
BUT I WONDER IF YOU COULD TELL

3598
02:07:50,600 --> 02:07:52,280
US SORT OF AT A HIGH ALTITUDE

3599
02:07:52,280 --> 02:07:53,240
WHERE THE PROGRAM STANDS IN

3600
02:07:53,240 --> 02:07:55,240
TERMS OF DEVELOPING NEW TYPES,

3601
02:07:55,240 --> 02:07:58,160
NEW CATEGORIES OF PHARMACOLOGIC

3602
02:07:58,160 --> 02:07:59,600
INTERVENTIONS WHICH ARE NOT

3603
02:07:59,600 --> 02:08:01,240
OPIOID, BUT WHICH NONETHELESS

3604
02:08:01,240 --> 02:08:03,440
ARE AS EFFECTIVE AS OPIATES, AND

3605
02:08:03,440 --> 02:08:04,520
HOPEFULLY WHICH ARE NOT

3606
02:08:04,520 --> 02:08:06,040
ADDICTIVE, OR IS THAT EVEN

3607
02:08:06,040 --> 02:08:06,320
POSSIBLE?

3608
02:08:06,320 --> 02:08:07,920
BECAUSE IT SEEMS TO ME WHAT

3609
02:08:07,920 --> 02:08:09,760
YOU'VE EMPLOYED HERE IS A

3610
02:08:09,760 --> 02:08:10,760
WONDERFUL COMBINATION OF

3611
02:08:10,760 --> 02:08:11,640
EXISTING THERAPIES BUT THE

3612
02:08:11,640 --> 02:08:13,720
QUESTION IS, ARE THERE NEW

3613
02:08:13,720 --> 02:08:14,600
THERAPIES AROUND THE CORNER?

3614
02:08:14,600 --> 02:08:15,000
THANK YOU.

3615
02:08:15,000 --> 02:08:17,440
>>GREAT QUESTION.

3616
02:08:17,440 --> 02:08:19,560
THANKS, LINDA.

3617
02:08:19,560 --> 02:08:21,600
SO AS I MENTIONED DURING THE

3618
02:08:21,600 --> 02:08:23,240
TALK, WE HAVE 56 TARGETS THAT

3619
02:08:23,240 --> 02:08:24,600
ARE BEING IDENTIFIED, NONE OF

3620
02:08:24,600 --> 02:08:29,240
THEM ARE OPIOID TARGETS.

3621
02:08:29,240 --> 02:08:31,680
ACTUALLY AGONISTS OF THE MU

3622
02:08:31,680 --> 02:08:33,920
OPIOID RECEPTOR ARE EXCLUDED

3623
02:08:33,920 --> 02:08:36,320
FROM ALMOST ALL OF THE HEAL

3624
02:08:36,320 --> 02:08:37,600
PROGRAMS.

3625
02:08:37,600 --> 02:08:38,880
SO THOSE 13 DEVELOPMENTAL

3626
02:08:38,880 --> 02:08:41,440
PROJECTS THAT YOU SEE IN THE

3627
02:08:41,440 --> 02:08:43,400
PTDP, ALL OF THE HUNDREDS OF

3628
02:08:43,400 --> 02:08:45,120
COMPANIES THAT HAVE APPLIED TO

3629
02:08:45,120 --> 02:08:49,960
THE SBISR01s, THEY'RE ALL

3630
02:08:49,960 --> 02:08:51,720
NON-OPIOID OR NON-ADDICTING.

3631
02:08:51,720 --> 02:08:55,320
AND AS A PART OF THE MANY OF

3632
02:08:55,320 --> 02:08:58,680
THOSE INITIATIVES, YOU HAVE TO

3633
02:08:58,680 --> 02:08:59,720
INCLUDE TESTING OF THE ABUSE

3634
02:08:59,720 --> 02:09:02,440
LIABILITY IN THEM.

3635
02:09:02,440 --> 02:09:05,720
SO ON THAT SIDE, THE WHOLE

3636
02:09:05,720 --> 02:09:07,080
PROGRAM IS NON-ADDICTING.

3637
02:09:07,080 --> 02:09:08,160
BUT ON THE PART OF YOUR QUESTION

3638
02:09:08,160 --> 02:09:09,880
IS HOW CLOSE ARE WE, HOW CLOSE

3639
02:09:09,880 --> 02:09:11,640
ARE WE, THAT'S A REALLY

3640
02:09:11,640 --> 02:09:12,400
DIFFICULT QUESTION.

3641
02:09:12,400 --> 02:09:15,120
SO I THINK THAT IN MY OPINION,

3642
02:09:15,120 --> 02:09:17,000
THE CLOSEST PROJECTS ARE THE

3643
02:09:17,000 --> 02:09:17,680
SBIR ONES.

3644
02:09:17,680 --> 02:09:19,440
IT'S BECAUSE THEY'RE JUST BUILT

3645
02:09:19,440 --> 02:09:20,760
FOR COMMERCIALIZATION.

3646
02:09:20,760 --> 02:09:23,480
AND I THINK THE SOONEST ONES

3647
02:09:23,480 --> 02:09:24,800
THAT COULD MAKE TO THE MARKET

3648
02:09:24,800 --> 02:09:27,560
ARE SOME OF THE DEVICE ONES.

3649
02:09:27,560 --> 02:09:30,600
BUT WITH THAT SAID, THERE ARE

3650
02:09:30,600 --> 02:09:32,360
SOME VERY INTERESTING PROGRAMS

3651
02:09:32,360 --> 02:09:33,840
THAT I DIDN'T SUMMARIZE NOW THAT

3652
02:09:33,840 --> 02:09:35,280
WE HAD FUNDED -- THEY ORIGINALLY

3653
02:09:35,280 --> 02:09:37,600
STARTED WITH THE BPN PROGRAM

3654
02:09:37,600 --> 02:09:40,120
THAT WE'D FUNDED WITH HEAL WITH

3655
02:09:40,120 --> 02:09:41,320
A SUPPLEMENT PROGRAM, YOU KNOW,

3656
02:09:41,320 --> 02:09:43,520
THAT ARE IN CLINICAL TESTING AT

3657
02:09:43,520 --> 02:09:44,160
THIS POINT.

3658
02:09:44,160 --> 02:09:46,280
AND YOU KNOW, THOSE TARGETS

3659
02:09:46,280 --> 02:09:48,120
REALLY SHOW NO ABUSE LIABILITY.

3660
02:09:48,120 --> 02:09:49,440
DO YOU THINK IT'S POSSIBILITY?

3661
02:09:49,440 --> 02:09:54,560
YES.

3662
02:09:54,560 --> 02:09:54,840
 POSSIBLE

3663
02:09:54,840 --> 02:09:55,200
>>YES.

3664
02:09:55,200 --> 02:09:57,680
>>ON THAT AFFIRMATIVE
NOTE, ONE

3665
02:09:57,680 --> 02:10:00,400
LAST QUESTION FROM TIM, THEN PUT

3666
02:10:00,400 --> 02:10:01,240
OTHER QUESTIONS IN THE CHAT.

3667
02:10:01,240 --> 02:10:03,680
>>FOR MICHAEL, SOME

3668
02:10:03,680 --> 02:10:05,560
CLARIFICATION IN THE CALL FOR

3669
02:10:05,560 --> 02:10:07,800
NEW NON-RODENT ANIMAL MODELS

3670
02:10:07,800 --> 02:10:09,640
FOR, I GUESS, PRE-CLINICAL PAIN

3671
02:10:09,640 --> 02:10:10,400
STUDIES.

3672
02:10:10,400 --> 02:10:12,840
DO YOU HAVE AN ALGORITHM OR

3673
02:10:12,840 --> 02:10:14,480
CRITERIA, BECAUSE OBVIOUSLY THE

3674
02:10:14,480 --> 02:10:16,680
MORE ADVANCED IT GOES TO SAY A

3675
02:10:16,680 --> 02:10:18,440
NON-HUMAN PRIMATE, THERE'S MORE

3676
02:10:18,440 --> 02:10:19,760
RESTRICTIONS, THERE'S EXPENSE,

3677
02:10:19,760 --> 02:10:21,280
ET CETERA, SORT OF MANIPULATIONS

3678
02:10:21,280 --> 02:10:22,560
YOU CAN'T DO COMPARED TO A

3679
02:10:22,560 --> 02:10:23,720
RODENT.

3680
02:10:23,720 --> 02:10:25,520
SO IS THERE SOME KIND OF WHEEL

3681
02:10:25,520 --> 02:10:29,280
OF FORTUNE WHERE YOU SORT OF

3682
02:10:29,280 --> 02:10:30,360
DECIDED WHAT YOUR NEEDS ARE,

3683
02:10:30,360 --> 02:10:32,560
WHAT YOU'RE WILLING TO ACCEPT IN

3684
02:10:32,560 --> 02:10:34,200
TERMS OF EITHER THE PRICE OR THE

3685
02:10:34,200 --> 02:10:37,280
LIMITATIONS OF THAT MODEL?

3686
02:10:37,280 --> 02:10:40,120
>>SO THE FUNDING
ANNOUNCEMENT

3687
02:10:40,120 --> 02:10:41,080
DOES HAS LIMITS ON THE SIZE OF

3688
02:10:41,080 --> 02:10:41,840
THE GRANT ITSELF.

3689
02:10:41,840 --> 02:10:44,400
WE'RE HOPING THAT THAT LIMIT IS

3690
02:10:44,400 --> 02:10:44,720
WITHIN THE --

3691
02:10:44,720 --> 02:10:45,920
>>THIS ISN'T REALLY A
FINANCIAL

3692
02:10:45,920 --> 02:10:46,200
QUESTION.

3693
02:10:46,200 --> 02:10:47,880
IT WAS MORE LITERALLY IN THE

3694
02:10:47,880 --> 02:10:49,480
CHOICE OF MODEL, LIKE WHAT THE

3695
02:10:49,480 --> 02:10:52,080
CRITERIA WOULD BE TO WHAT WOULD

3696
02:10:52,080 --> 02:10:54,120
BE A SUITABLE NON-RODENT MODEL.

3697
02:10:54,120 --> 02:10:55,480
AS I SAID, THERE'S GOING TO BE

3698
02:10:55,480 --> 02:10:56,120
LIMITS OF WHAT YOU CAN DO --

3699
02:10:56,120 --> 02:10:58,200
>>THAT'S THE GOAL OF THE

3700
02:10:58,200 --> 02:10:58,720
PROJECT.

3701
02:10:58,720 --> 02:10:59,760
BUT THE GOAL OF THE PROJECT IS

3702
02:10:59,760 --> 02:11:01,160
TO DEVELOP SOMETHING THAT, FIRST

3703
02:11:01,160 --> 02:11:02,720
OF ALL, IN THE FIRST CRITERIA

3704
02:11:02,720 --> 02:11:04,560
FOR DETERMINING IF THE MODEL IS

3705
02:11:04,560 --> 02:11:05,920
APPROPRIATE IS A SCIENTIFIC ONE.

3706
02:11:05,920 --> 02:11:08,960
AND THE SECOND ONE, THEY HAD TO

3707
02:11:08,960 --> 02:11:12,120
INCLUDE FEASIBILITY OF

3708
02:11:12,120 --> 02:11:13,880
IMPLEMENTING THAT IN A

3709
02:11:13,880 --> 02:11:14,760
PRE-CLINICAL SETTING.

3710
02:11:14,760 --> 02:11:16,520
SO WE'LL SEE HOW IT SHAKES OUT.

3711
02:11:16,520 --> 02:11:18,000
THOSE PROJECTS ARE STILL --

3712
02:11:18,000 --> 02:11:19,640
WE'RE WAITING FOR THEM TO COME

3713
02:11:19,640 --> 02:11:20,480
IN AND REVIEW THEM, ET CETERA.

3714
02:11:20,480 --> 02:11:20,880
>>THANK YOU.

3715
02:11:20,880 --> 02:11:21,800
>>OKAY.

3716
02:11:21,800 --> 02:11:23,000
I APOLOGIZE FOR RUSHING.

3717
02:11:23,000 --> 02:11:25,280
WHY DON'T WE TAKE A 10-MINUTE

3718
02:11:25,280 --> 02:11:29,480
BREAK WHICH MEANS COME BACK AT

3719
02:11:29,480 --> 02:11:29,800
3:25 SHARP.

3720
02:11:29,800 --> 02:11:31,240
THE A.L.S. AGENDA MAY TAKE A

3721
02:11:31,240 --> 02:11:32,440
LITTLE LONGER THAN WE THOUGHT SO

3722
02:11:32,440 --> 02:11:35,160
I WANT TO STAY NOT TOO FAR

3723
02:11:35,160 --> 02:11:35,720
BEHIND SCHEDULE.

3724
02:11:35,720 --> 02:11:36,640
I'LL SEAL YOU I SEE YOU IN 10 M.

3725
02:11:36,640 --> 02:11:37,200
LET'S GET STARTED.

3726
02:11:37,200 --> 02:11:39,000
I WANT TO TRY TO KEEP US NOT TOO

3727
02:11:39,000 --> 02:11:42,080
FAR BEHIND.

3728
02:11:42,080 --> 02:11:43,280
THE NEXT SESSION, AS YOU CAN

3729
02:11:43,280 --> 02:11:45,120
SEE, IS ABOUT STRATEGIC

3730
02:11:45,120 --> 02:11:46,320
PRIORITIES FOR A.L.S.

3731
02:11:46,320 --> 02:11:47,960
I'M GOING TO TURN IT OVER TO

3732
02:11:47,960 --> 02:11:49,200
AMELIE, THE PROGRAM DIRECTOR

3733
02:11:49,200 --> 02:11:51,480
FROM THE NEURODEGENERATIVE

3734
02:11:51,480 --> 02:11:52,520
CLUSTER, WHO WILL INTRODUCE

3735
02:11:52,520 --> 02:11:52,880
THIS.

3736
02:11:52,880 --> 02:11:53,680
AMELIE?

3737
02:11:53,680 --> 02:11:55,960
>>THANK YOU SO MUCH, AND
I HAVE

3738
02:11:55,960 --> 02:11:58,400
A SLIDE DECK, SO MAYBE MY SLIDES

3739
02:11:58,400 --> 02:11:59,440
CAN BE PULLED UP.

3740
02:11:59,440 --> 02:11:59,800
OKAY.

3741
02:11:59,800 --> 02:12:00,200
PERFECT.

3742
02:12:00,200 --> 02:12:03,400
SO GOOD AFTERNOON, EVERYBODY.

3743
02:12:03,400 --> 02:12:05,280
SO IN THE NEXT SESSION, WE ARE

3744
02:12:05,280 --> 02:12:09,240
GOING TO DISCUSS STRATEGIC

3745
02:12:09,240 --> 02:12:10,880
PRIORITIES FOR RESEARCH

3746
02:12:10,880 --> 02:12:11,960
FACILITATED BY NINDS OVER THE

3747
02:12:11,960 --> 02:12:13,040
LAST YEAR OR SO.

3748
02:12:13,040 --> 02:12:15,640
AND WE'LL ALSO HAVE A

3749
02:12:15,640 --> 02:12:17,600
PRESENTATION BY

3750
02:12:17,600 --> 02:12:18,320
DR. CORRIGAN-CURAY ABOUT FDA

3751
02:12:18,320 --> 02:12:22,280
ACTIVITIES IN RESPONSE TO ACT

3752
02:12:22,280 --> 02:12:22,840
FOR A.L.S.

3753
02:12:22,840 --> 02:12:24,480
ALSO A PRESENTATION BY WALTER

3754
02:12:24,480 --> 02:12:25,480
ABOUT PARTNERSHIP OPPORTUNITIES

3755
02:12:25,480 --> 02:12:30,800
IN A.L.S. RESEARCH.

3756
02:12:30,800 --> 02:12:33,120
SO THE OVERALL GOAL OF THE

3757
02:12:33,120 --> 02:12:34,440
A.L.S. STRATEGIC PLANNING EFFORT

3758
02:12:34,440 --> 02:12:36,200
WAS TO IDENTIFY THE HIGHEST

3759
02:12:36,200 --> 02:12:38,280
PRIORITIES FOR RESEARCH THAT

3760
02:12:38,280 --> 02:12:40,600
WILL LEAD TO THE DISCOVERY OF

3761
02:12:40,600 --> 02:12:41,720
BETTER INTERVENTION FOR THE

3762
02:12:41,720 --> 02:12:43,560
DIAGNOSIS, TREATMENT,

3763
02:12:43,560 --> 02:12:44,760
MANAGEMENT, PREVENTION OR CURE

3764
02:12:44,760 --> 02:12:46,080
OF A.L.S.

3765
02:12:46,080 --> 02:12:47,600
AND WE STARTED THE PROCESS ABOUT

3766
02:12:47,600 --> 02:12:49,480
A YEAR AGO BY RELEASING A

3767
02:12:49,480 --> 02:12:52,200
REQUEST FOR INFORMATION TO ASK

3768
02:12:52,200 --> 02:12:54,200
FOR INPUT FROM THE PUBLIC ABOUT

3769
02:12:54,200 --> 02:12:56,040
THEIR VIEW ABOUT THE TOP

3770
02:12:56,040 --> 02:12:58,720
PRIORITIES FOR A.L.S. RESEARCH.

3771
02:12:58,720 --> 02:13:00,200
AND IN OUR VIEW, THIS REQUEST

3772
02:13:00,200 --> 02:13:01,200
FOR INFORMATION WAS REALLY

3773
02:13:01,200 --> 02:13:01,520
SUCCESSFUL.

3774
02:13:01,520 --> 02:13:03,600
WE RECEIVED OVER 300 RESPONSES

3775
02:13:03,600 --> 02:13:05,800
WITH REALLY VALUABLE FEEDBACK,

3776
02:13:05,800 --> 02:13:07,200
AND THESE RESPONSES WERE THEN

3777
02:13:07,200 --> 02:13:08,600
SHARED WITH THE STEERING

3778
02:13:08,600 --> 02:13:10,440
COMMITTEE THAT WAS LEADING THE

3779
02:13:10,440 --> 02:13:11,960
EFFORT AS WELL AS FIVE WORKING

3780
02:13:11,960 --> 02:13:12,720
GROUPS.

3781
02:13:12,720 --> 02:13:14,480
SO LAST SPRING, THE STEERING

3782
02:13:14,480 --> 02:13:16,680
COMMITTEE HELPED US FORM FIVE

3783
02:13:16,680 --> 02:13:19,000
WORKING GROUPS THAT WERE TASKED

3784
02:13:19,000 --> 02:13:21,400
TO ADDRESS DIFFERENT AREAS OF

3785
02:13:21,400 --> 02:13:23,840
A.L.S. RESEARCH, INCLUDING

3786
02:13:23,840 --> 02:13:24,960
BASIC, TRANSLATIONAL, CLINICAL

3787
02:13:24,960 --> 02:13:27,120
AND QUALITY OF LIFE RESEARCH, AS

3788
02:13:27,120 --> 02:13:28,880
WELL AS OPPORTUNITIES FOR

3789
02:13:28,880 --> 02:13:32,600
PARTNERSHIPS AND COLLABORATION,

3790
02:13:32,600 --> 02:13:36,640
AND DEVELOP AND ARTICULATE

3791
02:13:36,640 --> 02:13:38,840
PRIORITY FOR EACH OF THESE AREAS

3792
02:13:38,840 --> 02:13:42,360
OF RESEARCH, AND WE ASKED THEM

3793
02:13:42,360 --> 02:13:45,200
TO HONE DOWN AND FOCUS ON THREE

3794
02:13:45,200 --> 02:13:47,160
PRIORITIES EACH, WHICH WAS

3795
02:13:47,160 --> 02:13:47,800
CHALLENGING BECAUSE THEY ALL HAD

3796
02:13:47,800 --> 02:13:51,800
A LOT OF GROUND TO COVER.

3797
02:13:51,800 --> 02:13:54,160
SO THE WORKING GROUPS THEN MET

3798
02:13:54,160 --> 02:13:55,840
VIA TELECONFERENCES MANY TIME

3799
02:13:55,840 --> 02:13:58,240
OVEOVER THE SPRING AND THE SUMMR

3800
02:13:58,240 --> 02:13:59,800
AND THEY DEVELOPED DRAFT

3801
02:13:59,800 --> 02:14:00,720
PRIORITIES WHICH WERE THEN

3802
02:14:00,720 --> 02:14:01,800
PRESENTED AND DISCUSSED AT A

3803
02:14:01,800 --> 02:14:04,200
PUBLIC WORKSHOP THAT WAS HELD

3804
02:14:04,200 --> 02:14:05,840
VIRTUALLY AT THE END OF OCTOBER.

3805
02:14:05,840 --> 02:14:07,000
AND DURING THAT WORKSHOP, THERE

3806
02:14:07,000 --> 02:14:10,560
WAS A LOT OF OPPORTUNITY FOR

3807
02:14:10,560 --> 02:14:11,800
DISCUSSION AND PUBLIC COMMENT.

3808
02:14:11,800 --> 02:14:14,760
SO AFTER THE WORKSHOP, THE

3809
02:14:14,760 --> 02:14:16,200
REVISED PRIORITIES WERE THEN

3810
02:14:16,200 --> 02:14:19,240
POSTED ONLINE FOR ABOUT A MONTH

3811
02:14:19,240 --> 02:14:20,560
FOR FORMAL WRITTEN PUBLIC

3812
02:14:20,560 --> 02:14:21,680
COMMENT, AND AGAIN, WE GOT

3813
02:14:21,680 --> 02:14:22,840
REALLY VALUABLE FEEDBACK AND

3814
02:14:22,840 --> 02:14:23,800
THAT FEEDBACK WAS SHARED WITH

3815
02:14:23,800 --> 02:14:25,080
THE WORKING GROUP AND THE

3816
02:14:25,080 --> 02:14:25,760
STEERING COMMITTEE FOR FURTHER

3817
02:14:25,760 --> 02:14:26,960
CONSIDERATION.

3818
02:14:26,960 --> 02:14:31,760
AND TODAY, WE ARE SHARING AND

3819
02:14:31,760 --> 02:14:32,760
PRESENTING THE FINAL VERSION OF

3820
02:14:32,760 --> 02:14:36,840
THESE PRIORITIES TO COUNCIL FOR

3821
02:14:36,840 --> 02:14:43,160
CONSIDERATION AND A VOTE.

3822
02:14:43,160 --> 02:14:44,760
SO WE REALLY WANT TO THANK ALL

3823
02:14:44,760 --> 02:14:46,160
OF THE PARTICIPANTS OF THIS

3824
02:14:46,160 --> 02:14:46,800
PLANNING EFFORT.

3825
02:14:46,800 --> 02:14:48,560
IT WAS HIGHLY INTERACTIVE.

3826
02:14:48,560 --> 02:14:50,320
AS YOU CAN SEE MANY PEOPLE WERE

3827
02:14:50,320 --> 02:14:52,080
INVOLVED, SO WE HAD THE STEERING

3828
02:14:52,080 --> 02:14:53,760
COMMITTEE, THE WORKING GROUPS

3829
02:14:53,760 --> 02:14:55,400
AND IN EACH OF THE WORKING

3830
02:14:55,400 --> 02:14:56,240
GROUPS, WE HAD A PERSON LIVING

3831
02:14:56,240 --> 02:14:57,440
WITH THE DISEASE OR AFFECTED

3832
02:14:57,440 --> 02:14:58,680
WITH THE DISEASE CONTRIBUTE.

3833
02:14:58,680 --> 02:15:03,600
WE ALSO HAD STAFF FROM NINDS

3834
02:15:03,600 --> 02:15:05,560
INVOLVED.

3835
02:15:05,560 --> 02:15:07,240
CHRISTINE WAS OUR OVERALL

3836
02:15:07,240 --> 02:15:07,720
COORDINATOR, AS WELL AS

3837
02:15:07,720 --> 02:15:09,400
COLLEAGUES FROM OTHER INSTITUTES

3838
02:15:09,400 --> 02:15:13,040
AND CENTERS AT NIH, AS WELL AS

3839
02:15:13,040 --> 02:15:15,400
THE FDA, THE CDC AND ALSO THE

3840
02:15:15,400 --> 02:15:16,680
A.L.S. RESEARCH PROGRAM OF DOD,

3841
02:15:16,680 --> 02:15:18,520
AND WE ALSO REALLY WANT TO THANK

3842
02:15:18,520 --> 02:15:21,040
THE BROADER A.L.S. COMMUNITY

3843
02:15:21,040 --> 02:15:25,880
INCLUDING PEOPLE AFFECTED BY THD

3844
02:15:25,880 --> 02:15:27,880
OTHER STA STAKEHOLDERS FOR THEIR

3845
02:15:27,880 --> 02:15:28,880
REALLY ACTIVE ENGAGEMENT

3846
02:15:28,880 --> 02:15:31,200
THROUGHOUT THE PROCESS.

3847
02:15:31,200 --> 02:15:32,840
AND FOR THE DISCUSSION THIS

3848
02:15:32,840 --> 02:15:34,280
AFTERNOON, WE HAVE FIVE

3849
02:15:34,280 --> 02:15:36,280
PARTICIPANTS, INCLUDING DR. RITA

3850
02:15:36,280 --> 02:15:36,680
SATTLER.

3851
02:15:36,680 --> 02:15:40,640
SHE IS A PROFESSOR AT THE BARROW

3852
02:15:40,640 --> 02:15:42,120
NEUROLOGICAL INSTITUTE, DR. BOB

3853
02:15:42,120 --> 02:15:43,640
BROWN, WHO IS THE DIRECTOR OF

3854
02:15:43,640 --> 02:15:45,560
THE PROGRAM IN NEUROLOGICAL

3855
02:15:45,560 --> 02:15:47,880
THERAPEUTICS AT UMASS CHAN

3856
02:15:47,880 --> 02:15:49,560
MEDICAL SCHOOL.

3857
02:15:49,560 --> 02:15:50,760
DR. LAYNE OLIFF, WHO IS A PERSON

3858
02:15:50,760 --> 02:15:54,160
LIVING WITH A.L.S.

3859
02:15:54,160 --> 02:15:56,680
HE IS A RESEARCH AMBASSADOR AND

3860
02:15:56,680 --> 02:15:58,200
ALSO AN ADVOCATE FOR THE

3861
02:15:58,200 --> 02:16:01,280
INTERNATIONAL ALLIANCE FOR

3862
02:16:01,280 --> 02:16:03,600
ALS/MND ASSOCIATIONS.

3863
02:16:03,600 --> 02:16:05,440
ELLEN PHILLIPS, CAREGIVER, BOARD

3864
02:16:05,440 --> 02:16:06,480
CHAIR EMERITUS OF THE A.L.S.

3865
02:16:06,480 --> 02:16:08,200
ASSOCIATION GREATER PHILADELPHIA

3866
02:16:08,200 --> 02:16:11,600
CHAPTER, AND ALSO DAN DOCTOROFF,

3867
02:16:11,600 --> 02:16:13,280
WHO ALSO LIVES WITH THE DISEASE,

3868
02:16:13,280 --> 02:16:15,520
HE'S THE FORMER CHAIRMAN AND CEO

3869
02:16:15,520 --> 02:16:17,440
OF SIDEWALK LABS AND THE FOUNDER

3870
02:16:17,440 --> 02:16:18,720
AND NOW SERVES ON THE BOARD OF

3871
02:16:18,720 --> 02:16:20,720
DIRECTORS OF TARGET A.L.S.

3872
02:16:20,720 --> 02:16:22,880
SO NOW I'LL TURN IT OVER TO RITA

3873
02:16:22,880 --> 02:16:23,200
AND BOB.

3874
02:16:23,200 --> 02:16:28,600
THANK YOU.

3875
02:16:28,600 --> 02:16:30,440
>>THANK YOU, AMELIE, AND
THANK

3876
02:16:30,440 --> 02:16:32,280
YOU TO THE COUNCIL AND THE

3877
02:16:32,280 --> 02:16:33,640
MEMBERS OF THE COUNCIL FOR

3878
02:16:33,640 --> 02:16:35,680
GIVING US AN OPPORTUNITY TO

3879
02:16:35,680 --> 02:16:38,560
SUMMARIZE REALLY THIS INCREDIBLE

3880
02:16:38,560 --> 02:16:40,320
EFFORT THAT WAS PUT TOGETHER

3881
02:16:40,320 --> 02:16:42,480
OTHER THE LAST YEAR BY, AS YOU

3882
02:16:42,480 --> 02:16:44,480
SAW, A REALLY BROAD GROUP OF

3883
02:16:44,480 --> 02:16:46,800
PEOPLE AND WE'RE REALLY EXCITED

3884
02:16:46,800 --> 02:16:48,120
THAT WE WERE ABLE TO INTEGRATE

3885
02:16:48,120 --> 02:16:49,120
THE A.L.S. COMMUNITY

3886
02:16:49,120 --> 02:16:51,160
PARTICULARLY IN THIS EFFORT,

3887
02:16:51,160 --> 02:16:53,520
INCLUDING PEOPLE LIVING WITH THE

3888
02:16:53,520 --> 02:16:54,800
DISEASE, CAREGIVERS OF THE

3889
02:16:54,800 --> 02:16:56,560
DISEASE, CARRIERS OF GENETIC

3890
02:16:56,560 --> 02:16:57,880
MUTATIONS THAT ARE AT RISK OF

3891
02:16:57,880 --> 02:16:58,880
DEVELOPING THIS DISEASE, AND SO

3892
02:16:58,880 --> 02:17:00,840
WE'RE REALLY EXCITED TO SHARE

3893
02:17:00,840 --> 02:17:03,920
THE RESULTS OF THIS EFFORT WITH

3894
02:17:03,920 --> 02:17:05,000
YOU IN THE NEXT FEW MINUTES.

3895
02:17:05,000 --> 02:17:06,840
SO IF I CAN HAVE THE FIRST SLIDE

3896
02:17:06,840 --> 02:17:11,720
DECK, PLEASE.

3897
02:17:11,720 --> 02:17:12,920
THIS IS JUST A SUMMARY OF THE

3898
02:17:12,920 --> 02:17:14,440
EFFORTS THAT WE PUT TOGETHER,

3899
02:17:14,440 --> 02:17:15,880
AND AS AMELIE NICELY ALREADY

3900
02:17:15,880 --> 02:17:17,320
HIGHLIGHTED, WE HAD FIVE WORKING

3901
02:17:17,320 --> 02:17:18,440
GROUPS THAT WE PUT TOGETHER FOR

3902
02:17:18,440 --> 02:17:20,680
THIS EFFORT.

3903
02:17:20,680 --> 02:17:22,120
THE WORKING GROUPS REALLY

3904
02:17:22,120 --> 02:17:22,960
FOCUSED ON DIFFERENT ASPECTS

3905
02:17:22,960 --> 02:17:27,000
THAT REALLY, IF WE BRING THEM

3906
02:17:27,000 --> 02:17:28,280
ALL TOGETHER, SHOULD BE ABLE TO

3907
02:17:28,280 --> 02:17:29,160
ADDRESS SOME OF THE CONCERNS AND

3908
02:17:29,160 --> 02:17:30,560
THE COMMENTS THAT WE RECEIVED

3909
02:17:30,560 --> 02:17:34,040
FROM THE PUBLIC FORUMS TO

3910
02:17:34,040 --> 02:17:35,400
ADDRESS QUESTIONS ON WHERE

3911
02:17:35,400 --> 02:17:37,280
SHOULD WE REALLY FOCUS ON A.L.S.

3912
02:17:37,280 --> 02:17:38,680
RESEARCH IN REGARDS TO THE BASIC

3913
02:17:38,680 --> 02:17:40,720
RESEARCH, THE CLINICAL EFFORTS,

3914
02:17:40,720 --> 02:17:42,440
AND ALSO THE QUALITY OF LIFE OF

3915
02:17:42,440 --> 02:17:44,640
INDIVIDUALS LIVING WITH THE

3916
02:17:44,640 --> 02:17:45,080
DISEASE.

3917
02:17:45,080 --> 02:17:47,760
SO REALLY JUST TO SUMMARIZE, THE

3918
02:17:47,760 --> 02:17:48,840
FIRST WORKING GROUP REALLY

3919
02:17:48,840 --> 02:17:51,280
FOCUSED ON ACCELERATING THE

3920
02:17:51,280 --> 02:17:52,840
RESEARCH ON THE BIOLOGY BEHIND

3921
02:17:52,840 --> 02:17:53,560
A.L.S., AND WE'LL TELL YOU THE

3922
02:17:53,560 --> 02:17:55,440
RESULTS OF THE PRIORITIES IN THE

3923
02:17:55,440 --> 02:17:56,120
FOLLOWING SLIDES.

3924
02:17:56,120 --> 02:17:58,080
WE HAD ONE WORKING GROUP THAT

3925
02:17:58,080 --> 02:18:01,040
REALLY SORT OF FOCUSED ON THE

3926
02:18:01,040 --> 02:18:02,560
TRANSLATIONAL ASPECTS, HOW DO WE

3927
02:18:02,560 --> 02:18:04,000
THEN USE AND UTILIZE WHAT WE

3928
02:18:04,000 --> 02:18:05,160
LEARN IN THE RESEARCH AREA AND

3929
02:18:05,160 --> 02:18:07,000
HOW DO WE THEN MOVE THIS INTO

3930
02:18:07,000 --> 02:18:11,720
THERAPEUTIC DEVELOPMENT.

3931
02:18:11,720 --> 02:18:12,960
THE THIRD WORKING GROUP THEN

3932
02:18:12,960 --> 02:18:14,040
TOOK ALL OF THAT AND TRIED TO

3933
02:18:14,040 --> 02:18:15,600
DEFINE, ONCE WE HAVE A

3934
02:18:15,600 --> 02:18:17,640
THERAPEUTIC, HOW DO WE REALLY DO

3935
02:18:17,640 --> 02:18:20,680
OUR BEST EFFORT IN RUNNING

3936
02:18:20,680 --> 02:18:22,280
CLINICAL TRIALS, HOW DO WE

3937
02:18:22,280 --> 02:18:23,920
DESIGN THOSE CLINICAL TRIALS,

3938
02:18:23,920 --> 02:18:25,320
WHAT PATIENT POPULATIONS ARE WE

3939
02:18:25,320 --> 02:18:26,720
GOING TO INTEGRATE INTO THESE

3940
02:18:26,720 --> 02:18:27,480
CLINICAL TRIALS, AND HOW SHOULD

3941
02:18:27,480 --> 02:18:30,720
WE GO ABOUT THIS.

3942
02:18:30,720 --> 02:18:32,400
AND THEN THE LAST TWO WORKING

3943
02:18:32,400 --> 02:18:33,640
GROUPS WERE REALLY, YOU KNOW,

3944
02:18:33,640 --> 02:18:36,120
TRYING TO EMPHASIZE WHAT IS

3945
02:18:36,120 --> 02:18:37,120
IMPORTANT IS THAT WE PUT

3946
02:18:37,120 --> 02:18:38,160
PATIENTS FIRST AND HOW DO WE

3947
02:18:38,160 --> 02:18:39,240
OPTIMIZE AND HOW DO WE IMPROVE

3948
02:18:39,240 --> 02:18:41,120
THE QUALITY OF LIFE FOR A.L.S.

3949
02:18:41,120 --> 02:18:42,400
PATIENTS, AND WHAT DOES IT

3950
02:18:42,400 --> 02:18:43,440
REALLY MEAN, WHAT DOES IT MEAN,

3951
02:18:43,440 --> 02:18:44,280
QUALITY OF LIFE?

3952
02:18:44,280 --> 02:18:46,600
WHAT DO THE INDIVIDUALS LIVING

3953
02:18:46,600 --> 02:18:48,600
WITH THIS DISEASE ACTUALLY SEE

3954
02:18:48,600 --> 02:18:50,120
AS IMPORTANT FOR THEIR QUALITY

3955
02:18:50,120 --> 02:18:55,160
OF LIFE AND HOW CAN WE THEN MAKE

3956
02:18:55,160 --> 02:18:56,040
EFFORTS IN MAKING THAT HAPPEN

3957
02:18:56,040 --> 02:18:57,680
AND IMPROVING THOSE ASPECTS OF

3958
02:18:57,680 --> 02:18:57,960
IT?

3959
02:18:57,960 --> 02:18:59,600
AND THEN FINALLY WHAT IS REALLY

3960
02:18:59,600 --> 02:19:00,880
IMPORTANT, AND I THINK THIS HAS

3961
02:19:00,880 --> 02:19:02,280
COME UP THROUGHOUT THE MEETING

3962
02:19:02,280 --> 02:19:04,680
ACTUALLY TODAY, I HEARD THIS

3963
02:19:04,680 --> 02:19:06,160
HERE AND THERE, TO IMPROVE

3964
02:19:06,160 --> 02:19:06,880
COLLABORATIVE PARTNERSHIPS.

3965
02:19:06,880 --> 02:19:09,080
AND THOSE ARE REALLY IMPORTANT

3966
02:19:09,080 --> 02:19:10,680
IN REGARDS TO BRINGING TOGETHER

3967
02:19:10,680 --> 02:19:12,200
EVERYBODY THAT IS PART OF THIS

3968
02:19:12,200 --> 02:19:13,400
COMMUNITY.

3969
02:19:13,400 --> 02:19:14,280
STARTING FROM THE INDIVIDUALS

3970
02:19:14,280 --> 02:19:15,960
LIVING WITH THE DISEASE AND THE

3971
02:19:15,960 --> 02:19:17,560
CAREGIVERS TO THE RESEARCHERS

3972
02:19:17,560 --> 02:19:20,080
THAT SIT AT THE BENCH AND DO THE

3973
02:19:20,080 --> 02:19:21,360
RESEARCH TO THE CLINICIANS THAT

3974
02:19:21,360 --> 02:19:23,200
SEE PATIENTS AND RUN THE

3975
02:19:23,200 --> 02:19:25,520
CLINICAL TRIALS, BUT ALSO

3976
02:19:25,520 --> 02:19:27,480
THROUGH THE PHILANTHROPY THAT IS

3977
02:19:27,480 --> 02:19:28,640
THERE TO SUPPORT ALL OF THESE

3978
02:19:28,640 --> 02:19:30,160
EFFORTS AND REALLY BRINGING

3979
02:19:30,160 --> 02:19:30,600
EVERYBODY TOGETHER.

3980
02:19:30,600 --> 02:19:32,360
SO IF I CAN HAVE THE NEXT SLIDE,

3981
02:19:32,360 --> 02:19:34,120
I'M GOING TO PRESENT THE FIRST

3982
02:19:34,120 --> 02:19:36,120
THREE PRIORITIES THAT CAME OUT

3983
02:19:36,120 --> 02:19:37,480
OF THE WORKING GROUP OF THE

3984
02:19:37,480 --> 02:19:40,280
RESEARCH AND THE BIOLOGY BEHIND

3985
02:19:40,280 --> 02:19:40,480
A.L.S.

3986
02:19:40,480 --> 02:19:42,680
THIS WORKING GROUP WAS

3987
02:19:42,680 --> 02:19:48,080
CO-CHAIRED BY AMAR AL-CHALABI

3988
02:19:48,080 --> 02:19:57,760
AND CLOTILDE LAGIER-TOURENNE,

3989
02:19:57,760 --> 02:19:58,560
THERE'S A LOT OBVIOUSLY THAT

3990
02:19:58,560 --> 02:19:59,600
NEEDS TO BE DONE IN REGARDS TO

3991
02:19:59,600 --> 02:20:04,320
THE RESEARCH ON HOW WE BETTER

3992
02:20:04,320 --> 02:20:05,200
UNDERSTAND HOW THIS DISEASE IS

3993
02:20:05,200 --> 02:20:06,120
REALLY DEVELOPED.

3994
02:20:06,120 --> 02:20:09,040
AND THEY CAME UP WITH THREE

3995
02:20:09,040 --> 02:20:10,160
PRIORITIES WHICH SORT OF WERE

3996
02:20:10,160 --> 02:20:11,120
REALLY ACCEPTED ALSO BY THE

3997
02:20:11,120 --> 02:20:13,000
PUBLIC AND WERE COMMENTED ON BY

3998
02:20:13,000 --> 02:20:14,200
THE PUBLIC COMMENTS THAT WE GOT

3999
02:20:14,200 --> 02:20:14,960
LATER ON.

4000
02:20:14,960 --> 02:20:16,440
ONE IS TO REALLY FIGURE OUT WHAT

4001
02:20:16,440 --> 02:20:20,480
HAPPENS TO SPORADIC A.L.S.

4002
02:20:20,480 --> 02:20:22,720
MOST OF YOU KNOW THAT 10% OF

4003
02:20:22,720 --> 02:20:24,400
A.L.S. PATIENTS HAVE A FAMILY

4004
02:20:24,400 --> 02:20:26,440
HISTORY AND ARE CONSIDERED

4005
02:20:26,440 --> 02:20:29,040
FAMILIAL, BUT THE MAJORITY OF

4006
02:20:29,040 --> 02:20:31,000
PATIENTS, BETWEEN 85 AND 90, IS

4007
02:20:31,000 --> 02:20:32,000
REALLY SPORADIC, WHERE WE DON'T

4008
02:20:32,000 --> 02:20:34,040
HAVE A FAMILY HISTORY AND NOT

4009
02:20:34,040 --> 02:20:35,480
YET MANY GENES ARE ASSOCIATED

4010
02:20:35,480 --> 02:20:38,080
WITH THE DEVELOPMENT OF SPORADIC

4011
02:20:38,080 --> 02:20:38,360
A.L.S.

4012
02:20:38,360 --> 02:20:41,080
SO WE REALLY HAVE TO FIGURE OUT

4013
02:20:41,080 --> 02:20:42,840
MORE ABOUT HOW SPORADIC A.L.S.

4014
02:20:42,840 --> 02:20:44,280
MIGHT BE DEVELOPED IN THOSE

4015
02:20:44,280 --> 02:20:46,480
PATIENTS AND IN THAT PATIENT

4016
02:20:46,480 --> 02:20:48,440
POPULATION, AND HOW WE CAN

4017
02:20:48,440 --> 02:20:50,320
OBVIOUSLY THEN SUBSEQUENTLY

4018
02:20:50,320 --> 02:20:51,400
TARGET THIS.

4019
02:20:51,400 --> 02:20:54,040
THIS REALLY ALSO EMPHASIZES JUST

4020
02:20:54,040 --> 02:20:56,000
IN GENERAL THE DISEASE HETEROJE

4021
02:20:56,000 --> 02:20:56,360
NATE.

4022
02:20:56,360 --> 02:21:00,160
A.L.S. IS AN INCREDIBLE

4023
02:21:00,160 --> 02:21:01,040
HETEROGENEOUS DISEASE, NOT BASED

4024
02:21:01,040 --> 02:21:02,720
ON THE GENETICS AS I JUST

4025
02:21:02,720 --> 02:21:04,280
POINTED OUT BUT REALLY ALSO

4026
02:21:04,280 --> 02:21:05,360
BASED ON THE PATHOLOGY AND

4027
02:21:05,360 --> 02:21:06,680
DISEASE MECHANISMS ON THE ONSET

4028
02:21:06,680 --> 02:21:08,080
OF THE DISEASE.

4029
02:21:08,080 --> 02:21:09,040
EVERY PATIENT SORT OF HAS THEIR

4030
02:21:09,040 --> 02:21:11,640
OWN DEVELOPMENT AND PROGRESSION

4031
02:21:11,640 --> 02:21:12,760
OF THE DISEASE, AND THERE'S

4032
02:21:12,760 --> 02:21:15,120
REALLY A NEED FOR US TO BETTER

4033
02:21:15,120 --> 02:21:17,720
UNDERSTAND THIS AND TO THEN

4034
02:21:17,720 --> 02:21:18,840
AGAIN UTILIZE THIS KNOWLEDGE FOR

4035
02:21:18,840 --> 02:21:20,840
THE FUTURE DEVELOPMENT OF NOVEL

4036
02:21:20,840 --> 02:21:21,560
THERAPEUTICS.

4037
02:21:21,560 --> 02:21:24,440
AND THEN FINALLY, AND AGAIN THIS

4038
02:21:24,440 --> 02:21:26,520
SEEMS OBVIOUS, BUT IT WAS REALLY

4039
02:21:26,520 --> 02:21:30,040
AN EMPHASIS TO PUT FORWARD TO

4040
02:21:30,040 --> 02:21:31,680
REALLY HONE IN ON NOVEL

4041
02:21:31,680 --> 02:21:32,240
TECHNOLOGIES.

4042
02:21:32,240 --> 02:21:34,560
HOW CAN WE REACH OUT, HOW CAN WE

4043
02:21:34,560 --> 02:21:35,440
THINK OUTSIDE OF THE BOX, HOW

4044
02:21:35,440 --> 02:21:37,200
CAN WE INTEGRATE OTHER

4045
02:21:37,200 --> 02:21:38,400
DISCIPLINES THAT HELP US TO

4046
02:21:38,400 --> 02:21:41,640
REALLY STUDY THIS DISEASE IN

4047
02:21:41,640 --> 02:21:43,200
BETTER WAYS AND MORE EFFICIENT

4048
02:21:43,200 --> 02:21:45,240
WAYS AND FASTER WAYS.

4049
02:21:45,240 --> 02:21:48,520
IF I CAN HAVE THE NEXT SLIDE.

4050
02:21:48,520 --> 02:21:49,720
THIS WAS THE WORKING GROUP THAT

4051
02:21:49,720 --> 02:21:50,880
REALLY FOCUSED ON THE

4052
02:21:50,880 --> 02:21:52,320
TRANSLATIONAL ASPECTS OF THIS

4053
02:21:52,320 --> 02:21:53,960
DISEASE.

4054
02:21:53,960 --> 02:21:59,560
CO-CHAIRED BY DRS. NEIL

4055
02:21:59,560 --> 02:22:02,720
SCHNEIDER AND STACY WENINGER.

4056
02:22:02,720 --> 02:22:04,360
ONE WAS TO ESTABLISH WHAT THEY

4057
02:22:04,360 --> 02:22:05,920
CALLED A CENTERS OF EXCELLENCE.

4058
02:22:05,920 --> 02:22:06,800
WE CAN LATER DISCUSS WHETHER

4059
02:22:06,800 --> 02:22:09,720
THIS IS THE RIGHT NOMINATION OR

4060
02:22:09,720 --> 02:22:10,600
NOMENCLATURE THAT WE COULD USE,

4061
02:22:10,600 --> 02:22:12,240
BUT THE IDEA WAS TO REALLY HAVE

4062
02:22:12,240 --> 02:22:13,480
CENTERS THAT THEN COULD SORT OF

4063
02:22:13,480 --> 02:22:15,840
OVERSEE SOME OF THESE EFFORTS,

4064
02:22:15,840 --> 02:22:17,520
BUT REALLY ALSO INTEGRATE NOT

4065
02:22:17,520 --> 02:22:19,520
JUST, YOU KNOW, CENTERS THAT ARE

4066
02:22:19,520 --> 02:22:20,920
HOSTED IN BIG CITY, BUT REALLY

4067
02:22:20,920 --> 02:22:23,920
MAKE SURE THAT WE INTEGRATE ALSO

4068
02:22:23,920 --> 02:22:26,080
SMALLER CLINICS THAT ARE IN MORE

4069
02:22:26,080 --> 02:22:27,760
RURAL AREAS THAT REALLY NEED THE

4070
02:22:27,760 --> 02:22:29,240
KNOWLEDGE AND ALSO THE

4071
02:22:29,240 --> 02:22:30,440
INFRASTRUCTURE THAT ARE ALREADY

4072
02:22:30,440 --> 02:22:32,160
AVAILABLE IN THE LARGER CENTERS.

4073
02:22:32,160 --> 02:22:35,520
AND THAT ALSO LEADS TO ENHANCING

4074
02:22:35,520 --> 02:22:38,120
THE INFRASTRUCTURE NOT JUST FOR

4075
02:22:38,120 --> 02:22:40,720
PATIENT CARE AND ACCESS, BUT

4076
02:22:40,720 --> 02:22:42,880
REALLY ALSO FOR THINGS SUCH AS

4077
02:22:42,880 --> 02:22:43,760
BIOSAMPLE REPOSITORIES.

4078
02:22:43,760 --> 02:22:45,080
WE ALL KNOW THAT ONE WAY FOR US

4079
02:22:45,080 --> 02:22:47,240
TO BETTER UNDERSTAND AND TO

4080
02:22:47,240 --> 02:22:48,640
BETTER DIAGNOSE, TO FASTER

4081
02:22:48,640 --> 02:22:51,680
DIAGNOSE THE DISEASE ARE THINGS

4082
02:22:51,680 --> 02:22:53,400
LIKE BIOMARKER DEVELOPMENT.

4083
02:22:53,400 --> 02:22:55,520
BIOMARKERS CAN BE DEVELOPED WITH

4084
02:22:55,520 --> 02:22:58,120
THE RESOURCE OF VARYING

4085
02:22:58,120 --> 02:22:59,120
BIOSAMPLES THAT WE CAN HARVEST

4086
02:22:59,120 --> 02:23:00,960
AND THAT WE CAN OBTAIN FROM

4087
02:23:00,960 --> 02:23:02,200
PATIENTS.

4088
02:23:02,200 --> 02:23:05,760
CSF SAMPLES, BLOOD, SALIVA,

4089
02:23:05,760 --> 02:23:06,040
URINE.

4090
02:23:06,040 --> 02:23:07,800
ANY OF THESE SAMPLE REPOSITORIES

4091
02:23:07,800 --> 02:23:10,720
SHOULD REALLY SORT OF BE BETTER

4092
02:23:10,720 --> 02:23:11,800
ORGANIZED AND THERE SHOULD BE

4093
02:23:11,800 --> 02:23:16,240
ACCESS FOR EVERYBODY TO GET --

4094
02:23:16,240 --> 02:23:17,480
TO HAVE THE ABILITY TO TEST

4095
02:23:17,480 --> 02:23:19,920
THESE SAMPLES FOR SPECIFIC

4096
02:23:19,920 --> 02:23:21,400
HYPOTHESES WE HAVE TO DEVELOP

4097
02:23:21,400 --> 02:23:23,480
MORE STRONGER AND MORE RELIABLE

4098
02:23:23,480 --> 02:23:25,120
BIOMARKERS THAT CAN HELP US,

4099
02:23:25,120 --> 02:23:26,680
AGAIN WITH BETTER UNDERSTANDING

4100
02:23:26,680 --> 02:23:28,640
THE DISEASE AND POTENTIAL MAKING

4101
02:23:28,640 --> 02:23:30,760
BETTER DECISIONS ON CLINICAL

4102
02:23:30,760 --> 02:23:32,760
TRIAL DESIGN AND DEVELOPMENT AND

4103
02:23:32,760 --> 02:23:34,960
THEN FINALLY, REALLY ALSO IN THE

4104
02:23:34,960 --> 02:23:36,200
TRANSLATIONAL ASPECT, WE NEED

4105
02:23:36,200 --> 02:23:38,520
VERY EARLY ON TO GET EVERYBODY

4106
02:23:38,520 --> 02:23:41,000
TOGETHER AROUND THE TABLE.

4107
02:23:41,000 --> 02:23:43,400
INDUSTRY, ACADEMIA, WE HAVE TO

4108
02:23:43,400 --> 02:23:45,200
MAKE SURE THAT THIS WORKS

4109
02:23:45,200 --> 02:23:46,960
EASIER, THERE'S LESS BARRIERS,

4110
02:23:46,960 --> 02:23:48,600
LESS RED FLAGS.

4111
02:23:48,600 --> 02:23:50,640
IT IS SOMETIMES REALLY DIFFICULT

4112
02:23:50,640 --> 02:23:55,480
IN ORDER TO GET MTAs CROSSED

4113
02:23:55,480 --> 02:23:57,520
FROM ACADEMIA TO AN INDUSTRY,

4114
02:23:57,520 --> 02:23:59,960
WORKING TOGETHER WITH INDUSTRY

4115
02:23:59,960 --> 02:24:00,480
CAN SOMETIMES BE REALLY

4116
02:24:00,480 --> 02:24:01,400
DIFFICULT, AND THERE HAS TO BE A

4117
02:24:01,400 --> 02:24:04,040
WAY THAT WE FACILITATE THIS

4118
02:24:04,040 --> 02:24:05,080
INTERACTION BETWEEN EVERYBODY

4119
02:24:05,080 --> 02:24:06,760
WHO REALLY ONLY HAS A VERY

4120
02:24:06,760 --> 02:24:08,920
COMMON GOAL WHICH IS TO MOVE

4121
02:24:08,920 --> 02:24:10,440
FAST FORWARD TOWARDS A

4122
02:24:10,440 --> 02:24:13,520
DEVELOPMENT OF NOVEL

4123
02:24:13,520 --> 02:24:14,120
THERAPEUTICS.

4124
02:24:14,120 --> 02:24:17,280
SO I'M REQUESTIN GOING TO HAND R

4125
02:24:17,280 --> 02:24:18,600
TO MY CO-CHAIR BOB BROWN WHO

4126
02:24:18,600 --> 02:24:19,480
WILL INTRODUCE THE OTHER THREE

4127
02:24:19,480 --> 02:24:27,080
WORKING GROUPS OF OUR EFFORT.

4128
02:24:27,080 --> 02:24:29,600
>>YOU'RE MUTED, BOB!

4129
02:24:29,600 --> 02:24:31,080
>>THANK YOU.

4130
02:24:31,080 --> 02:24:33,320
SO THE THIRD GROUP WAS CHARGED

4131
02:24:33,320 --> 02:24:36,920
WITH THINKING ABOUT THE MOVEMENT

4132
02:24:36,920 --> 02:24:38,920
EFFORTS TO OPTIMIZE CLINICAL

4133
02:24:38,920 --> 02:24:42,240
RESEARCH AS WAS SHARED BY --

4134
02:24:42,240 --> 02:24:47,200
THIS WAS CHAIRED BY MERIT

4135
02:24:47,200 --> 02:24:51,280
CUDKOWICZ AND TIM MILLER.

4136
02:24:51,280 --> 02:24:52,600
FINALLY ENDORSED, ONE WAS THAT

4137
02:24:52,600 --> 02:24:54,360
IT WOULD LIKELY BE USEFUL IF

4138
02:24:54,360 --> 02:24:56,320
DONE PROPERLY TO HAVE A NEW

4139
02:24:56,320 --> 02:24:57,680
NATURAL HISTORY STUDY OF A.L.S.

4140
02:24:57,680 --> 02:24:59,680
WITH A PARTICULAR FOCUS ON THE

4141
02:24:59,680 --> 02:25:02,680
EARLIEST ASPECTS OF THE DISEASE.

4142
02:25:02,680 --> 02:25:04,880
AND TO THE EXTENT THAT ONE CAN,

4143
02:25:04,880 --> 02:25:06,720
PARTICULARLY IN A GENETIC

4144
02:25:06,720 --> 02:25:09,120
CONTEXT, LOOKING AT

4145
02:25:09,120 --> 02:25:10,120
PRESYMPTOMATIC ASPECTS OF THE

4146
02:25:10,120 --> 02:25:10,320
DISEASE.

4147
02:25:10,320 --> 02:25:12,000
THE THOUGHT WAS IF THIS WAS DONE

4148
02:25:12,000 --> 02:25:14,640
PROPERLY, IT WOULD BE

4149
02:25:14,640 --> 02:25:16,200
HYPOTHESIS-ENABLING AND IT WOULD

4150
02:25:16,200 --> 02:25:17,400
ULTIMATELY BE INCLUSIVE ENOUGH

4151
02:25:17,400 --> 02:25:18,280
TO ADDRESS SOME OF THE ISSUES

4152
02:25:18,280 --> 02:25:19,480
THAT WE'VE DISCUSSED PREVIOUSLY,

4153
02:25:19,480 --> 02:25:20,840
SUCH AS INCORPORATING A DIVERSE

4154
02:25:20,840 --> 02:25:22,800
SET OF PATIENTS.

4155
02:25:22,800 --> 02:25:24,000
BROADENING OUR PICTURE OF THE

4156
02:25:24,000 --> 02:25:25,480
SPECTRUM OF WHAT A.L.S.

4157
02:25:25,480 --> 02:25:28,440
PHENOTYPES CAN BE.

4158
02:25:28,440 --> 02:25:29,840
SO ONE OF THE ISSUES, THEREFORE,

4159
02:25:29,840 --> 02:25:34,120
WAS EXACTLY THAT, TO LOOK AT THE

4160
02:25:34,120 --> 02:25:35,280
BROADEST SET OF PATIENTS

4161
02:25:35,280 --> 02:25:35,560
POSSIBLE.

4162
02:25:35,560 --> 02:25:36,880
RIGHT NOW THERE IS A LIMITATION

4163
02:25:36,880 --> 02:25:40,320
IN TERMS OF UNDERREPRESENTED

4164
02:25:40,320 --> 02:25:41,960
MINORITIES AND ONE WOULD LIKE TO

4165
02:25:41,960 --> 02:25:43,320
DEAL WITH THAT SO THAT WE HAVE A

4166
02:25:43,320 --> 02:25:45,920
MUCH BROADER VIEW AGAIN OF THE

4167
02:25:45,920 --> 02:25:47,360
FULL COLORING OF THE SPECTRUM OF

4168
02:25:47,360 --> 02:25:47,760
A.L.S.

4169
02:25:47,760 --> 02:25:49,480
ONE OF THE ISSUES THAT WAS

4170
02:25:49,480 --> 02:25:50,880
ADDRESSED WAS THE NEED TO HAVE

4171
02:25:50,880 --> 02:25:55,400
BETTER BIOMARKERS THAT REFLECTED

4172
02:25:55,400 --> 02:25:57,160
BOTH PHARMACODYNAMICS OF

4173
02:25:57,160 --> 02:25:58,040
SPECIFIC DRUGS AS WELL AS THE

4174
02:25:58,040 --> 02:25:58,920
ACTUAL ACTIVITY OF THE DISEASE

4175
02:25:58,920 --> 02:26:02,080
ITSELF.

4176
02:26:02,080 --> 02:26:03,320
THE ISSUE OF OUT COME MEASURES

4177
02:26:03,320 --> 02:26:04,440
WAS DISCUSSED IN DETAIL.

4178
02:26:04,440 --> 02:26:07,880
YOU KNOW, FOR EXAMPLE, THE

4179
02:26:07,880 --> 02:26:10,080
PRESENTLY USED MOST COMMON

4180
02:26:10,080 --> 02:26:11,480
MARKER IS THE A.L.S. FUNCTIONAL

4181
02:26:11,480 --> 02:26:12,720
RATING SCALE WHICH IN FACT IS

4182
02:26:12,720 --> 02:26:14,320
ACCEPTED BY THE FDA, BUT IT HAS

4183
02:26:14,320 --> 02:26:15,320
SEVERAL LIMITATION.

4184
02:26:15,320 --> 02:26:17,120
IT ONLY APPLIES TO INDIVIDUALS

4185
02:26:17,120 --> 02:26:18,560
WHO ACTUALLY HAVE A.L.S., AND

4186
02:26:18,560 --> 02:26:22,240
HAS SEVERE LIMB TAIGS WHEN THERE

4187
02:26:22,240 --> 02:26:23,360
ARE BEHAVIORAL ASPECTS.

4188
02:26:23,360 --> 02:26:26,400
IT FOCUSES REALLY ONLY ON MOTOR

4189
02:26:26,400 --> 02:26:27,320
MANIFESTATIONS OF THE DISEASE

4190
02:26:27,320 --> 02:26:30,800
AND DOES NOT DISTINGUISH BETWEEN

4191
02:26:30,800 --> 02:26:32,520
PROGRESSION IN THE CNS AND

4192
02:26:32,520 --> 02:26:33,760
SPINAL CORD.

4193
02:26:33,760 --> 02:26:34,960
BIOMARKERS AND OUTCOMES VERY

4194
02:26:34,960 --> 02:26:36,240
SENSITIVE TO PRO IMRETION IN THE

4195
02:26:36,240 --> 02:26:37,360
EARLIEST AND THE LATEST STAGES

4196
02:26:37,360 --> 02:26:41,240
OF THE DISEASE.

4197
02:26:41,240 --> 02:26:42,320
ALSO ADDRESSED WITHIN THIS REALM

4198
02:26:42,320 --> 02:26:44,080
WAS THE IMPORTANCE OF NEW TYPES

4199
02:26:44,080 --> 02:26:45,840
OF CLINICAL TRIAL DESIGN SUCH AS

4200
02:26:45,840 --> 02:26:47,720
PLATFORM TRIALS.

4201
02:26:47,720 --> 02:26:50,480
AND THE THIRD COMPONENT OF THIS

4202
02:26:50,480 --> 02:26:52,240
WAS DEFINING THE EARLIEST

4203
02:26:52,240 --> 02:26:53,120
MANIFESTATIONS OF A.L.S. AS YOU

4204
02:26:53,120 --> 02:26:54,360
SEE HERE.

4205
02:26:54,360 --> 02:26:55,240
OBVIOUSLY THIS IS SOMETHING ONE

4206
02:26:55,240 --> 02:26:56,880
CAN PERHAPS DO MOST EASILY IN

4207
02:26:56,880 --> 02:26:59,280
THE CONTEXT OF MONOGENIC

4208
02:26:59,280 --> 02:27:00,720
CARRIERS OF THE DISEASE.

4209
02:27:00,720 --> 02:27:02,520
OR THOSE EVEN WITH A FAMILY

4210
02:27:02,520 --> 02:27:04,360
HISTORY WITHOUT A GENETIC CAUSE.

4211
02:27:04,360 --> 02:27:06,640
THIS IS MOST CHALLENGING FOR

4212
02:27:06,640 --> 02:27:11,000
SPORADIC A.L.S. CASES, IN WHICH

4213
02:27:11,000 --> 02:27:11,960
THE INDIVIDUAL MIGHT BE AT RISK

4214
02:27:11,960 --> 02:27:13,840
OF BECAUSE OF ENVIRONMENTAL

4215
02:27:13,840 --> 02:27:15,480
FACTORS, LIFESTYLE OR RATHER

4216
02:27:15,480 --> 02:27:15,960
CLINICAL EXPOSURES.

4217
02:27:15,960 --> 02:27:18,800
SO THIS WAS THOUGHT TO BE

4218
02:27:18,800 --> 02:27:19,720
ANOTHER VERY, VERY IMPORTANT

4219
02:27:19,720 --> 02:27:26,360
ASPECT OF THIS.

4220
02:27:26,360 --> 02:27:27,600
SO CONSIDER EFFORT WAS PUT TO

4221
02:27:27,600 --> 02:27:28,480
THE QUESTION ADDRESSING QUALITY

4222
02:27:28,480 --> 02:27:29,880
OF LIFE FOR PERSONS LIVING WITH

4223
02:27:29,880 --> 02:27:30,200
A.L.S.

4224
02:27:30,200 --> 02:27:33,120
THIS WAS A SESSION CHAIRED

4225
02:27:33,120 --> 02:27:37,280
BITTERY HEIMAN-PATTERSON AND

4226
02:27:37,280 --> 02:27:39,040
JEAN SWIDLER.

4227
02:27:39,040 --> 02:27:40,840
THIS FOCUSED ON THREE

4228
02:27:40,840 --> 02:27:42,920
PRIORITIES, IMPROVING AND

4229
02:27:42,920 --> 02:27:45,680
OPTIMIZING SYMPTOM MANAGEMENT,

4230
02:27:45,680 --> 02:27:46,480
OPTIMIZING FUNCTION AND

4231
02:27:46,480 --> 02:27:47,320
IDENTIFYING RESOURCES FOR A.L.S.

4232
02:27:47,320 --> 02:27:49,840
CARE.

4233
02:27:49,840 --> 02:27:51,680
THE FINAL WORKING GROUP

4234
02:27:51,680 --> 02:27:52,680
ADDRESSED THE IMPORTANT QUESTION

4235
02:27:52,680 --> 02:27:54,720
OF HOW TO GO BEYOND ANY ONE LAB

4236
02:27:54,720 --> 02:27:56,720
OR ANY ONE CENTER TOWARD

4237
02:27:56,720 --> 02:27:58,840
MEANINGFUL COLLABORATIONS AND

4238
02:27:58,840 --> 02:27:59,800
PARTNERSHIPS BOTH WITHIN

4239
02:27:59,800 --> 02:28:02,440
ACADEMIA AND POTENTIALLY WITH

4240
02:28:02,440 --> 02:28:03,520
ACADEMIA AND INDUSTRY.

4241
02:28:03,520 --> 02:28:10,240
THIS WAS CHAIRED BY DAN

4242
02:28:10,240 --> 02:28:14,520
DOCTOROFF AND LISA GOLD.

4243
02:28:14,520 --> 02:28:16,240
DR. DOCTOROFF HAS OF COURSE DONE

4244
02:28:16,240 --> 02:28:17,240
PIONEERING WORK IN THIS THROUGH

4245
02:28:17,240 --> 02:28:22,840
HIS FOUNDING A DIRECTORSHIP OF

4246
02:28:22,840 --> 02:28:24,200
TARGETING A.L.S.

4247
02:28:24,200 --> 02:28:25,840
WHICH INCLUDED NOT JUST DATA

4248
02:28:25,840 --> 02:28:27,880
ABOUT PATIENTS, PHENOTYPE,

4249
02:28:27,880 --> 02:28:29,200
BIOMARKERS AND SO FORTH BUT ALSO

4250
02:28:29,200 --> 02:28:30,600
SHARING INFORMATION ABOUT TOOLS,

4251
02:28:30,600 --> 02:28:32,520
ABOUT REAGENTS, ABOUT ALL OF

4252
02:28:32,520 --> 02:28:33,560
THOSE ELEMENTS THAT ARE

4253
02:28:33,560 --> 02:28:35,160
NECESSARY TO CONDUCT MEANINGFUL

4254
02:28:35,160 --> 02:28:36,400
RESEARCH, THAT WOULD BE THE

4255
02:28:36,400 --> 02:28:37,240
SECOND PRIORITY AS YOU CAN SEE

4256
02:28:37,240 --> 02:28:38,240
HERE.

4257
02:28:38,240 --> 02:28:41,960
AND THEN THE THIRD IS TO

4258
02:28:41,960 --> 02:28:44,360
ESTABLISH CLEARLY A BETTER WAY

4259
02:28:44,360 --> 02:28:46,000
TO OPTIMIZE COLLABORATIONS

4260
02:28:46,000 --> 02:28:47,680
BETWEEN ACADEMIA AND INDUSTRY,

4261
02:28:47,680 --> 02:28:49,440
RECOGNIZING AND WE HEARD THIS

4262
02:28:49,440 --> 02:28:50,240
DISCUSSED ACTUALLY IN THE

4263
02:28:50,240 --> 02:28:51,240
EARLIER SESSION THIS AFTERNOON,

4264
02:28:51,240 --> 02:28:53,560
THAT WHEN IT COMES TO

4265
02:28:53,560 --> 02:28:55,520
COMMERCIALIZATION AND WIDESPREAD

4266
02:28:55,520 --> 02:28:58,280
APPLICATION OF SOME DIAGNOSTIC

4267
02:28:58,280 --> 02:29:01,720
STUDIES AND THERAPEUTICS, THE

4268
02:29:01,720 --> 02:29:02,920
ASSOCIATION WITH INDUSTRY IS

4269
02:29:02,920 --> 02:29:04,760
INVALUABLE.

4270
02:29:04,760 --> 02:29:05,960
DR. DOCTOROFF WILL TALK A LITTLE

4271
02:29:05,960 --> 02:29:07,760
LATER AND HE MAY SAY MORE ABOUT

4272
02:29:07,760 --> 02:29:08,320
THIS.

4273
02:29:08,320 --> 02:29:12,800
SO I'LL TURN THE MICROPHONE BACK

4274
02:29:12,800 --> 02:29:13,200
TO RUTH.

4275
02:29:13,200 --> 02:29:17,000
RITA.>>THANKS, BOB.

4276
02:29:17,000 --> 02:29:18,560
I THINK ANOTHER ASPECT THAT WAS

4277
02:29:18,560 --> 02:29:19,680
REALLY IMPORTANT IN THIS EFFORT

4278
02:29:19,680 --> 02:29:22,240
WAS THAT WE HAD, AT THE PUBLIC

4279
02:29:22,240 --> 02:29:23,320
WORKSHOP THAT WE HELD IN

4280
02:29:23,320 --> 02:29:24,960
OCTOBER, THAT WE INTEGRATED NOT

4281
02:29:24,960 --> 02:29:26,040
JUST A DISCUSSION ABOUT THE

4282
02:29:26,040 --> 02:29:27,760
DIFFERENT WORKING GROUPS AND THE

4283
02:29:27,760 --> 02:29:29,080
PRIORITIES THAT WERE SET BY THE

4284
02:29:29,080 --> 02:29:32,720
WORKING GROUPS, THAT WE ALSO

4285
02:29:32,720 --> 02:29:34,880
INTEGRATED A SESSION WE CALLED A

4286
02:29:34,880 --> 02:29:36,240
LIVED EXPERIENCE PANEL.

4287
02:29:36,240 --> 02:29:44,000
THAT WAS LED BY LAYNE AND ELLEN

4288
02:29:44,000 --> 02:29:44,600
PHILLIPS.

4289
02:29:44,600 --> 02:29:46,680
THEY WILL GIVE YOU SOME COMMENTS

4290
02:29:46,680 --> 02:29:48,000
ON THEIR EXPERIENCE WITH WHAT

4291
02:29:48,000 --> 02:29:49,440
THEY DID DURING THIS EFFORT

4292
02:29:49,440 --> 02:29:53,160
DURING THE WORKSHOP AND HOW THEY

4293
02:29:53,160 --> 02:29:54,520
FELT THIS GREATLY CONTRIBUTED TO

4294
02:29:54,520 --> 02:29:55,840
THE OVERALL CONCEPT AND THE

4295
02:29:55,840 --> 02:29:56,720
PUTTING TOGETHER OF THIS WORKING

4296
02:29:56,720 --> 02:29:56,920
PLAN.

4297
02:29:56,920 --> 02:29:58,520
SO I JUST WANT TO EMPHASIZE

4298
02:29:58,520 --> 02:29:58,720
THAT.

4299
02:29:58,720 --> 02:30:00,480
I THINK WE CAN SKIP THAT SLIDE

4300
02:30:00,480 --> 02:30:02,120
BECAUSE WHAT I WOULD REALLY --

4301
02:30:02,120 --> 02:30:03,160
CAN WE GO TO THE NEXT ONE?

4302
02:30:03,160 --> 02:30:05,040
THIS IS REALLY JUST A SUMMARY OF

4303
02:30:05,040 --> 02:30:07,000
WHAT WE JUST HEARD, BUT WHAT WE

4304
02:30:07,000 --> 02:30:09,000
WANTED TO REALLY POINT OUT IS

4305
02:30:09,000 --> 02:30:11,440
THAT WHEN WE POSTED THIS PLAN

4306
02:30:11,440 --> 02:30:13,400
BACK TO THE PUBLIC AFTER WE HAD

4307
02:30:13,400 --> 02:30:15,240
THE WORKSHOP, WE GOT MORE

4308
02:30:15,240 --> 02:30:16,840
COMMENTS BACK, AND SO WHAT

4309
02:30:16,840 --> 02:30:19,360
REALLY, YOU KNOW, SORT OF CAME

4310
02:30:19,360 --> 02:30:20,640
ACROSS FROM ALL OF THE COMMENTS

4311
02:30:20,640 --> 02:30:22,240
THAT WE RECEIVED FOR THE SECOND

4312
02:30:22,240 --> 02:30:25,080
TIME, SO THE PUBLIC HAD REALLY A

4313
02:30:25,080 --> 02:30:26,040
LOT OF OPPORTUNITIES TO

4314
02:30:26,040 --> 02:30:27,720
CONTRIBUTE TO THIS, WAS THAT

4315
02:30:27,720 --> 02:30:29,760
REALLY THE URGENCY LIES IN

4316
02:30:29,760 --> 02:30:31,640
FIGURING OUT WHAT HAPPENS

4317
02:30:31,640 --> 02:30:32,840
PRESYMPTOMATICALLY AND HOW CAN

4318
02:30:32,840 --> 02:30:34,760
WE IMPROVE ON BIOMARKER

4319
02:30:34,760 --> 02:30:35,080
DEVELOPMENT.

4320
02:30:35,080 --> 02:30:37,480
SO THAT WAS FELT TO BE REALLY AN

4321
02:30:37,480 --> 02:30:39,160
IMPORTANT ASPECT AND WE SORT

4322
02:30:39,160 --> 02:30:40,960
OF -- WE WANTED TO MAYBE TRY AND

4323
02:30:40,960 --> 02:30:42,520
GIVE PRIORITIES TO THE

4324
02:30:42,520 --> 02:30:44,560
PRIORITIES BECAUSE WE OBVIOUSLY

4325
02:30:44,560 --> 02:30:46,440
REALIZE THAT 15 PRIORITIES IS A

4326
02:30:46,440 --> 02:30:49,440
LOT TO HANDLE, AND SO WE'RE

4327
02:30:49,440 --> 02:30:50,640
TRYING TO LISTEN TO THE PUBLIC,

4328
02:30:50,640 --> 02:30:53,000
WHERE THEY FELT AMONG THOSE 15

4329
02:30:53,000 --> 02:30:53,560
PRIORITIES WHERE SHOULD WE

4330
02:30:53,560 --> 02:30:54,000
REALLY START.

4331
02:30:54,000 --> 02:30:55,880
MAYBE THERE ARE SOME LOW HANGING

4332
02:30:55,880 --> 02:30:57,640
FRUIT THAT WE CAN TACKLE FIRST,

4333
02:30:57,640 --> 02:30:59,320
BEFORE WE GO TO THE MORE COMPLEX

4334
02:30:59,320 --> 02:31:00,840
ISSUES THAT WERE BROUGHT UP THAT

4335
02:31:00,840 --> 02:31:03,240
ARE YET, YOU KNOW, NEVERTHELESS

4336
02:31:03,240 --> 02:31:05,960
EQUALLY IMPORTANT TO THIS

4337
02:31:05,960 --> 02:31:09,680
COMMUNITY.

4338
02:31:09,680 --> 02:31:10,880
THE SECOND PART WAS REALLY THE

4339
02:31:10,880 --> 02:31:11,960
INCLUSION OF INDIVIDUALS AT RISK

4340
02:31:11,960 --> 02:31:13,440
FOR A.L.S. AND HOW CAN WE

4341
02:31:13,440 --> 02:31:14,240
INCLUDE THESE INDIVIDUALS IN

4342
02:31:14,240 --> 02:31:15,560
CLINICAL TRIAL DESIGNS.

4343
02:31:15,560 --> 02:31:16,720
EVERY MEETING THAT I'VE ATTENDED

4344
02:31:16,720 --> 02:31:18,320
OVER THE LAST YEAR BROUGHT THIS

4345
02:31:18,320 --> 02:31:20,840
UP AS A VERY CRITICAL DISCUSSION

4346
02:31:20,840 --> 02:31:22,520
POINT ON HOW CAN WE INTEGRATE

4347
02:31:22,520 --> 02:31:24,960
INDIVIDUAL THAT ARE AT RISK INTO

4348
02:31:24,960 --> 02:31:26,800
CLINICAL TRIALS THAT WE RUN THAT

4349
02:31:26,800 --> 02:31:28,480
USUALLY ARE RUN ONLY FOR

4350
02:31:28,480 --> 02:31:30,320
INDIVIDUALS THAT ALREADY HAVE

4351
02:31:30,320 --> 02:31:32,680
SYMPTOMS, AND HOW CAN WE SAFELY

4352
02:31:32,680 --> 02:31:33,800
INTEGRATE THESE INDIVIDUALS INTO

4353
02:31:33,800 --> 02:31:35,960
THOSE CLINICAL TRIAL DESIGNS TO

4354
02:31:35,960 --> 02:31:37,600
GIVE THEM AN OPPORTUNITY TO BE

4355
02:31:37,600 --> 02:31:40,400
PART OF THIS BECAUSE WE ALL KNOW

4356
02:31:40,400 --> 02:31:42,040
THE SAYING IS, THE EARLIER WE GO

4357
02:31:42,040 --> 02:31:43,600
IN, THE HIGHER LIKELIHOOD WE'RE

4358
02:31:43,600 --> 02:31:45,400
GOING TO HAVE IN ORDER TO SEE

4359
02:31:45,400 --> 02:31:47,280
EFFICACY WITH ANY OF THE

4360
02:31:47,280 --> 02:31:48,800
THERAPEUTICS THAT WE'RE TRIALING

4361
02:31:48,800 --> 02:31:51,320
FOR THESE PATIENTS AND FOR THIS

4362
02:31:51,320 --> 02:31:53,160
PATIENT POPULATION.

4363
02:31:53,160 --> 02:31:54,760
AND SOMETHING THAT BOB HAD

4364
02:31:54,760 --> 02:31:56,280
BROUGHT UP DURING THE DISCUSSION

4365
02:31:56,280 --> 02:31:58,600
ALREADY IN SOME OF THE

4366
02:31:58,600 --> 02:31:59,920
PRIORITIES, DIVERSITY AND

4367
02:31:59,920 --> 02:32:00,200
INCLUSIVITY.

4368
02:32:00,200 --> 02:32:01,320
THERE WAS REALLY A BIG EFFORT

4369
02:32:01,320 --> 02:32:05,680
FROM THE PUBLIC TO POINT OUT

4370
02:32:05,680 --> 02:32:07,080
THAT WE NEED TO MAKE SURE THAT

4371
02:32:07,080 --> 02:32:08,720
WE INTEGRATE INTO THE CENTERS OF

4372
02:32:08,720 --> 02:32:09,680
EXCELLENCE, MAYBE WE CAN CALL

4373
02:32:09,680 --> 02:32:13,960
THEM COOPERATIVE GROUPS, TO

4374
02:32:13,960 --> 02:32:15,080
REALLY MAKE SURE THAT WE

4375
02:32:15,080 --> 02:32:16,280
INTEGRATE EVERYBODY.

4376
02:32:16,280 --> 02:32:17,880
WE GO TO RURAL AREAS, WE

4377
02:32:17,880 --> 02:32:21,040
INTEGRATE MINORITIES AND DIVERSE

4378
02:32:21,040 --> 02:32:23,960
POPULATIONS INTO THE CLINICAL

4379
02:32:23,960 --> 02:32:25,200
TRIAL DESIGN, THE CARE DESIGNS

4380
02:32:25,200 --> 02:32:26,440
WE DO, THE RESEARCH TRIALS WE

4381
02:32:26,440 --> 02:32:27,760
DO, NOT JUST THE THERAPEUTIC

4382
02:32:27,760 --> 02:32:29,400
TRIALS BUT ALSO THE RESEARCH

4383
02:32:29,400 --> 02:32:32,320
TRIALS FOR THE COLLECTION OF

4384
02:32:32,320 --> 02:32:33,080
BIOMARKERS AND ALL OF THESE

4385
02:32:33,080 --> 02:32:33,440
EFFORTS.

4386
02:32:33,440 --> 02:32:34,720
SO THIS WAS REALLY A BIG

4387
02:32:34,720 --> 02:32:37,800
IMPORTANT ASPECT THAT WE WANTED

4388
02:32:37,800 --> 02:32:38,800
TO HIGHLIGHT AMONG THOSE

4389
02:32:38,800 --> 02:32:39,920
PRIORITIES THAT WE JUST

4390
02:32:39,920 --> 02:32:40,400
PRESENTED.

4391
02:32:40,400 --> 02:32:43,600
AND SO IF I CAN HAVE THE NEXT

4392
02:32:43,600 --> 02:32:46,240
SLIDE, THIS ONE, I TITLED THE

4393
02:32:46,240 --> 02:32:47,440
CONCERNS, THE RECURRING CONCERNS

4394
02:32:47,440 --> 02:32:50,800
THAT CAME FROM THE PUBLIC, AND I

4395
02:32:50,800 --> 02:32:52,400
JUST WANT TO REITERATE THOSE.

4396
02:32:52,400 --> 02:32:53,360
THESE CAME ALSO FROM DISCUSSIONS

4397
02:32:53,360 --> 02:32:55,520
THAT I HAD AFTER TALKING TO A

4398
02:32:55,520 --> 02:32:57,080
LOT OF INDIVIDUALS THAT ARE SORT

4399
02:32:57,080 --> 02:32:58,880
OF PART OF THIS COMMUNITY, AND

4400
02:32:58,880 --> 02:33:00,440
ONE OF THE IMPORTANT ASPECTS

4401
02:33:00,440 --> 02:33:01,920
CAME BACK OVER AND OVER AGAIN

4402
02:33:01,920 --> 02:33:04,680
AND THAT IS THE A.L.S. CLOCK AS

4403
02:33:04,680 --> 02:33:05,760
THE COMMUNITY REALLY CALLS IT.

4404
02:33:05,760 --> 02:33:09,680
AND THAT IS THE URGENCY THAT

4405
02:33:09,680 --> 02:33:11,040
THESE INDIVIDUALS HAVE A VERY

4406
02:33:11,040 --> 02:33:11,400
SHORT LIFESPAN.

4407
02:33:11,400 --> 02:33:14,920
WE ALL KNOW THAT THE MEDIAN

4408
02:33:14,920 --> 02:33:16,520
LIFESPAN OF AN A.L.S. PATIENT

4409
02:33:16,520 --> 02:33:17,840
AFTER BEING DIAGNOSED IS THREE

4410
02:33:17,840 --> 02:33:18,160
TO FIVE YEARS.

4411
02:33:18,160 --> 02:33:20,160
SO THE URGENCY OF REALLY MOVING

4412
02:33:20,160 --> 02:33:22,080
FORWARD AND IN ADDRESSING THESE

4413
02:33:22,080 --> 02:33:24,240
PRIORITIES IS THERE, AND THIS

4414
02:33:24,240 --> 02:33:25,600
CAME UP OVER AND OVER AGAIN, AND

4415
02:33:25,600 --> 02:33:27,080
WE REALLY WANTED TO MAKE SURE

4416
02:33:27,080 --> 02:33:29,200
THAT THE COUNCIL LISTENS TO THE

4417
02:33:29,200 --> 02:33:32,280
COMMENTS OF THE PUBLIC AND THE

4418
02:33:32,280 --> 02:33:33,720
CONCERNS THAT WAITING FOR A YEAR

4419
02:33:33,720 --> 02:33:36,120
IS A LONG TIME FOR THIS

4420
02:33:36,120 --> 02:33:39,800
POPULATION, FOR THIS PATIENT

4421
02:33:39,800 --> 02:33:40,720
POPULATION, AND THEY'RE REALLY

4422
02:33:40,720 --> 02:33:42,000
HOPING TO SEE THAT ACTION WILL

4423
02:33:42,000 --> 02:33:45,920
BE THERE IN A SHORTER PERIOD OF

4424
02:33:45,920 --> 02:33:47,760
TIME.

4425
02:33:47,760 --> 02:33:49,600
AND THAT SORT OF LEADS INTO THE

4426
02:33:49,600 --> 02:33:50,600
SECOND POINT IN THE

4427
02:33:50,600 --> 02:33:51,400
IMPLEMENTATION OF THE STRATEGIC

4428
02:33:51,400 --> 02:33:51,640
PLAN.

4429
02:33:51,640 --> 02:33:53,040
HOW ARE WE GOING TO IMPLEMENT

4430
02:33:53,040 --> 02:33:54,080
THESE PRIORITIES?

4431
02:33:54,080 --> 02:33:56,040
SHORT TERM, AS I SAID, LOW

4432
02:33:56,040 --> 02:33:57,320
HANGING FRUIT, WHAT CAN BE DONE

4433
02:33:57,320 --> 02:33:58,920
FAIRLY QUICKLY AND MAYBE LONG

4434
02:33:58,920 --> 02:34:01,560
TERM ON HOW WE ADDRESS THIS.

4435
02:34:01,560 --> 02:34:02,560
AND THEN WITH THIS FOLLOWING,

4436
02:34:02,560 --> 02:34:04,720
HOW DO WE MONITOR THE PROGRESS

4437
02:34:04,720 --> 02:34:05,320
ON THESE SET PRIORITIES?

4438
02:34:05,320 --> 02:34:06,680
IS THERE A WAY THAT WE CAN SET

4439
02:34:06,680 --> 02:34:07,840
SOMETHING IN PLACE THAT WE SORT

4440
02:34:07,840 --> 02:34:11,160
OF HAVE CHECKS AND BALANCES AND,

4441
02:34:11,160 --> 02:34:15,480
YOU KNOW, LOOKING BACK, HAVE WE

4442
02:34:15,480 --> 02:34:17,600
ADDRESSED ANY OF THESE ISSUES OR

4443
02:34:17,600 --> 02:34:19,240
ARE WE JUST GOING TO SIT THERE

4444
02:34:19,240 --> 02:34:21,560
AND WAIT UNTIL SOMETHING HAPPENS

4445
02:34:21,560 --> 02:34:23,840
WITHOUT ANY ACTION AND ANY

4446
02:34:23,840 --> 02:34:26,280
ACTIVITY AND ANY FEEDBACK TO THE

4447
02:34:26,280 --> 02:34:28,840
COMMUNITY TO SAY, LOOK, WE'VE

4448
02:34:28,840 --> 02:34:30,280
REALLY MADE AN EFFORT AND WE'VE

4449
02:34:30,280 --> 02:34:32,080
MANAGED TO ADDRESS PRIORITY A, B

4450
02:34:32,080 --> 02:34:32,840
AND C.

4451
02:34:32,840 --> 02:34:33,920
SO THIS IS SOMETHING THAT WE

4452
02:34:33,920 --> 02:34:35,360
WOULD LIKE TO PUT OUT FOR

4453
02:34:35,360 --> 02:34:37,120
DISCUSSION AND WE WOULD REALLY

4454
02:34:37,120 --> 02:34:38,320
APPRECIATE ANY FEEDBACK THAT WE

4455
02:34:38,320 --> 02:34:40,480
CAN GET FROM THE COUNCIL ON

4456
02:34:40,480 --> 02:34:44,280
THESE ASPECTS THAT WE' WERE REAY

4457
02:34:44,280 --> 02:34:45,320
RAISED AS IMPORTANT ISSUES BY

4458
02:34:45,320 --> 02:34:47,600
THE COMMUNITY WHEN WE PROVIDED

4459
02:34:47,600 --> 02:34:48,760
OUR STRATEGIC PLAN TO THE

4460
02:34:48,760 --> 02:34:51,440
PUBLIC.

4461
02:34:51,440 --> 02:34:52,560
SO WITH THAT, WE WOULD LIKE TO

4462
02:34:52,560 --> 02:34:53,800
INTRODUCE THE NEXT THREE

4463
02:34:53,800 --> 02:34:54,840
SPEAKERS, AND BOB IS ACTUALLY

4464
02:34:54,840 --> 02:34:55,680
GOING TO DO THAT.

4465
02:34:55,680 --> 02:34:56,880
SO I HAND IT OVER TO BOB FROM

4466
02:34:56,880 --> 02:34:59,880
HERE.

4467
02:34:59,880 --> 02:35:00,960
>>I'LL BE BRIEF.

4468
02:35:00,960 --> 02:35:02,320
YOU'VE ALREADY BEEN INTRODUCED

4469
02:35:02,320 --> 02:35:03,440
TO THEM.

4470
02:35:03,440 --> 02:35:13,720
ONE IS ELL ELLYN PHILLIPS, THE R

4471
02:35:13,720 --> 02:35:15,320
OF THE GREATER PHILADELPHIA

4472
02:35:15,320 --> 02:35:16,840
CHAPTER, SHE/HER SELF WAS AN

4473
02:35:16,840 --> 02:35:18,480
A.L.S. CAREGIVER.

4474
02:35:18,480 --> 02:35:23,600
THE SECOND IS LAYNE OLIFF,

4475
02:35:23,600 --> 02:35:25,160
RESEARCH AMBASSADOR FOR THE

4476
02:35:25,160 --> 02:35:26,440
NORTHEAST A.L.S. CONSORTIUM, AND

4477
02:35:26,440 --> 02:35:27,920
HE'S ALSO A FELLOW AND ACTIVE IN

4478
02:35:27,920 --> 02:35:30,640
THE INTERNATIONAL ALLIANCE OF

4479
02:35:30,640 --> 02:35:31,640
A.L.S./MND.

4480
02:35:31,640 --> 02:35:33,480
THE THIRD IS OUR COLLEAGUE AND

4481
02:35:33,480 --> 02:35:34,880
FRIEND DAN DOCTOROFF, WHO'S

4482
02:35:34,880 --> 02:35:36,760
ALREADY BEEN MENTIONED, WHO

4483
02:35:36,760 --> 02:35:38,640
HIMSELF HAS BEEN CONTENDING WITH

4484
02:35:38,640 --> 02:35:38,920
A.L.S.

4485
02:35:38,920 --> 02:35:40,320
HE'S THE FORMER CHAIR AS YOU'VE

4486
02:35:40,320 --> 02:35:43,600
HEARD AND CEO OF SIDEWALK LABS.

4487
02:35:43,600 --> 02:35:45,560
HE HAS HAD AN IMMENSE IMPACT ON

4488
02:35:45,560 --> 02:35:46,640
THE FIELD THROUGH THE CREATION

4489
02:35:46,640 --> 02:35:49,240
OF TARGET A.L.S., WHICH REALLY

4490
02:35:49,240 --> 02:35:54,800
HAS BROUGHT TOGETHER MANY

4491
02:35:54,800 --> 02:35:56,760
ACADEMIC LABS AND COMPANIES,

4492
02:35:56,760 --> 02:35:58,720
LARGE AND SMALL, AND FORMER

4493
02:35:58,720 --> 02:36:01,680
PRESIDENT AND CEO OF BLOOK BERG

4494
02:36:01,680 --> 02:36:05,080
PARTNERS, ALSO DEPUTY MAYOR OF

4495
02:36:05,080 --> 02:36:05,880
NEW YORK CITY IN CHARGE OF

4496
02:36:05,880 --> 02:36:06,880
ECONOMIC DEVELOPMENT.

4497
02:36:06,880 --> 02:36:08,200
IT'S BEEN FANTASTIC HAVING HIM

4498
02:36:08,200 --> 02:36:08,640
ON THIS TEAM.

4499
02:36:08,640 --> 02:36:11,480
SO WHY DON'T WE GO NOW TO ELLYN

4500
02:36:11,480 --> 02:36:11,880
AND LAYNE.

4501
02:36:11,880 --> 02:36:12,640
>>THANK YOU, BOB.

4502
02:36:12,640 --> 02:36:14,080
CAN YOU PUT THE SLIDES UP,

4503
02:36:14,080 --> 02:36:14,320
PLEASE?

4504
02:36:14,320 --> 02:36:16,240
THANK YOU.

4505
02:36:16,240 --> 02:36:18,200
ELLYN AND I WILL TAKE THIS

4506
02:36:18,200 --> 02:36:18,520
SECTION.

4507
02:36:18,520 --> 02:36:22,320
LET ME INTRODUCE MYSELF, LAYNE

4508
02:36:22,320 --> 02:36:22,520
OLIFF.

4509
02:36:22,520 --> 02:36:24,360
AS YOU CAN TELL BY THE WAY I

4510
02:36:24,360 --> 02:36:27,760
TALK, I HAVE A.L.S.

4511
02:36:27,760 --> 02:36:32,400
I AM A PHARMACIST BY TRAINING.

4512
02:36:32,400 --> 02:36:36,360
I WAS ORIGINALLY DIAGNOSED WITH

4513
02:36:36,360 --> 02:36:39,960
PLS IN 2017.

4514
02:36:39,960 --> 02:36:45,280
THAT WAS CHANGED TO A.L.S. ON

4515
02:36:45,280 --> 02:36:47,720
NOVEMBER 11TH OF 2020.

4516
02:36:47,720 --> 02:36:49,800
ENOUGH OF MY BACKGROUND.

4517
02:36:49,800 --> 02:36:52,480
I'D LIKE TO THANK FIRST THE

4518
02:36:52,480 --> 02:37:03,360
WORKING GROUPS, DR. SATTLER, DR,

4519
02:37:07,040 --> 02:37:10,240
DR. TORBORG AND ESPECIALLY ELLYN

4520
02:37:10,240 --> 02:37:11,440
PHILLIPS.

4521
02:37:11,440 --> 02:37:14,040
ELLYN AND I SPENT MANY HOURS

4522
02:37:14,040 --> 02:37:18,680
ACTUALLY TALKING ABOUT OUR ROLE

4523
02:37:18,680 --> 02:37:19,920
IN THE STEERING COMMITTEE AND

4524
02:37:19,920 --> 02:37:26,040
WORKING WITH THE WORKING GROUPS.

4525
02:37:26,040 --> 02:37:27,760
SO WORKING WITH ELLYN WAS A

4526
02:37:27,760 --> 02:37:28,360
PLEASURE.

4527
02:37:28,360 --> 02:37:31,800
I'LL TURN IT OVER TO EL IN ELLYW

4528
02:37:31,800 --> 02:37:33,240
TO TAKE OVER THE NEXT COUPLE

4529
02:37:33,240 --> 02:37:33,640
SLIDES.

4530
02:37:33,640 --> 02:37:34,800
ELLYN?

4531
02:37:34,800 --> 02:37:35,600
>>THANK YOU, LAYNE.

4532
02:37:35,600 --> 02:37:37,000
I FEEL THE SAME WAY ABOUT YOU.

4533
02:37:37,000 --> 02:37:39,080
I THINK YOU KNOW THAT.

4534
02:37:39,080 --> 02:37:41,840
IT'S GREAT TO BE BACK AT

4535
02:37:41,840 --> 02:37:45,640
COUNCIL, WHERE I SERVED FROM

4536
02:37:45,640 --> 02:37:47,160
2001 TO 2005.

4537
02:37:47,160 --> 02:37:48,800
I FIRST LEARNED ABOUT A.L.S.

4538
02:37:48,800 --> 02:37:51,520
WHEN MY HUSBAND ALLAN WAS

4539
02:37:51,520 --> 02:37:56,400
DIAGNOSED IN 1982 AT THE AGE OF

4540
02:37:56,400 --> 02:37:56,560
34.

4541
02:37:56,560 --> 02:37:58,840
DESPITE EXTRAORDINARY CARE AND

4542
02:37:58,840 --> 02:38:04,440
EMPATHY BY DR. FISHBACH, TWO

4543
02:38:04,440 --> 02:38:05,760
YEARS LATER, WHEN OUR PRECIOUS

4544
02:38:05,760 --> 02:38:08,040
DAUGHTER AMY WAS 3, HE DIED.

4545
02:38:08,040 --> 02:38:08,920
OUR WORLD WAS TURNED

4546
02:38:08,920 --> 02:38:09,440
UPSIDE-DOWN.

4547
02:38:09,440 --> 02:38:10,880
I'M SURE SO MANY OF YOU KNOW HOW

4548
02:38:10,880 --> 02:38:14,160
THAT FEELS.

4549
02:38:14,160 --> 02:38:16,400
FOR 40 YEARS, I HAVE HOPED,

4550
02:38:16,400 --> 02:38:18,800
PRAYED, AND WORKED TO HELP FIND

4551
02:38:18,800 --> 02:38:21,400
AN ANSWER TO A.L.S., AND I KNOW

4552
02:38:21,400 --> 02:38:24,000
I HAVEN'T BEEN DOING THIS ALONE.

4553
02:38:24,000 --> 02:38:27,440
IT WAS JANUARY 30TH, A YEAR AGO,

4554
02:38:27,440 --> 02:38:29,200
THAT DR. KOROSHETZ EMAILED ME

4555
02:38:29,200 --> 02:38:31,200
WITH AN INVITATION TO JOIN THE

4556
02:38:31,200 --> 02:38:34,160
STEERING COMMITTEE OF THE FIRST

4557
02:38:34,160 --> 02:38:36,760
EVER A.L.S. STRATEGIC PLAN.

4558
02:38:36,760 --> 02:38:38,360
I COULDN'T SAY NO, EVEN THOUGH I

4559
02:38:38,360 --> 02:38:40,360
HAD NO IDEA WHAT I WAS GETTING

4560
02:38:40,360 --> 02:38:48,120
MYSELF INTO.

4561
02:38:48,120 --> 02:38:49,840
THIS LOYAL GROUP WHO I GREW UP

4562
02:38:49,840 --> 02:38:51,960
WITH, SO MANY OF YOU, YOUR

4563
02:38:51,960 --> 02:38:58,680
DEDICATION HAS NEVER WANED.

4564
02:38:58,680 --> 02:39:01,960
I MET EXTRAORDINARY PEOPLE LIKE

4565
02:39:01,960 --> 02:39:03,840
JEAN SWITLER.

4566
02:39:03,840 --> 02:39:05,280
I WOULD ALWAYS WANT HER ON MY

4567
02:39:05,280 --> 02:39:06,120
TEAM.

4568
02:39:06,120 --> 02:39:07,840
AND I'VE ALREADY SPOKEN ABOUT

4569
02:39:07,840 --> 02:39:08,600
LAYNE.

4570
02:39:08,600 --> 02:39:10,680
HE'S THOUGHTFUL, INTELLIGENT,

4571
02:39:10,680 --> 02:39:12,760
AND HAS HELPED ME NAVIGATE

4572
02:39:12,760 --> 02:39:14,520
THROUGH THIS STRATEGIC PLAN

4573
02:39:14,520 --> 02:39:18,400
PROCESS.

4574
02:39:18,400 --> 02:39:19,720
INTERACTING WITH THE TIRELESS

4575
02:39:19,720 --> 02:39:21,920
MEMBERS OF NIH AND NINDS

4576
02:39:21,920 --> 02:39:23,880
PROVIDED INSIGHT INTO HOW

4577
02:39:23,880 --> 02:39:25,520
IMPORTANT THEIR CONNECTION IS TO

4578
02:39:25,520 --> 02:39:26,840
THE SUCCESS OF THE WORK WE HAVE

4579
02:39:26,840 --> 02:39:28,680
JUST COMPLETED.

4580
02:39:28,680 --> 02:39:37,120
COULD I HAVE SLIDE 2, PLEASE?

4581
02:39:37,120 --> 02:39:38,720
WHEN YOU LOOK AT THIS SLIDE

4582
02:39:38,720 --> 02:39:43,400
BELOW THE LIST OF THE STEERING

4583
02:39:43,400 --> 02:39:45,160
COMMITTEE, SORRY, AND WORKING

4584
02:39:45,160 --> 02:39:46,480
GROUP -- CAN WE SCROLL DOWN A

4585
02:39:46,480 --> 02:39:56,920
LITTLE BIT ON THAT SLIDE?

4586
02:39:57,240 --> 02:39:57,360
SORRY.

4587
02:39:57,360 --> 02:39:59,160
>>GO BACK TWO SLIDES.

4588
02:39:59,160 --> 02:40:00,760
>>SORRY, GO BACK TWO
SLIDES.

4589
02:40:00,760 --> 02:40:02,080
YES, I'M SORRY.

4590
02:40:02,080 --> 02:40:04,360
WE SEE AT THE BOTTOM OF THIS

4591
02:40:04,360 --> 02:40:07,760
SLIDE, AND THIS IS SO CRUCIAL,

4592
02:40:07,760 --> 02:40:11,320
11 OF 52 PARTICIPANTS ARE "ALS

4593
02:40:11,320 --> 02:40:14,080
EXPERIENCED EXPERTS."

4594
02:40:14,080 --> 02:40:17,800
AND ON SLIDE 3, PLEASE GO TO

4595
02:40:17,800 --> 02:40:22,920
SLIDE 3, THE IMPORTANCE OF

4596
02:40:22,920 --> 02:40:24,200
A.L.S. EXPERIENCED EXPERTS

4597
02:40:24,200 --> 02:40:24,760
BECOMES OBVIOUS.

4598
02:40:24,760 --> 02:40:32,000
EVERY WORKING GROUP HAD A PALS,

4599
02:40:32,000 --> 02:40:33,240
CALS OR GENE CARRIER.

4600
02:40:33,240 --> 02:40:34,240
THIS IS THE FIRST TIME THIS HAS

4601
02:40:34,240 --> 02:40:36,400
BEEN DONE, AND HOPEFULLY IT

4602
02:40:36,400 --> 02:40:37,360
WON'T BE THE LAST.

4603
02:40:37,360 --> 02:40:39,680
I WANT TO THANK YOU,

4604
02:40:39,680 --> 02:40:40,640
DR. KOROSHETZ, AND ALL THE

4605
02:40:40,640 --> 02:40:41,840
MEMBERS OF THE STRATEGIC

4606
02:40:41,840 --> 02:40:43,480
PLANNING COMMITTEE WHO HAVE

4607
02:40:43,480 --> 02:40:46,320
GIVEN HOURS AND HOURS OF WORK TO

4608
02:40:46,320 --> 02:40:48,800
PRODUCE THIS DOCUMENT, WHICH

4609
02:40:48,800 --> 02:40:50,360
WILL BE USED TO MOVE OUR EFFORTS

4610
02:40:50,360 --> 02:40:51,960
AHEAD SO THAT SOME DAY,

4611
02:40:51,960 --> 02:40:54,400
HOPEFULLY SOON, A 3-YEAR-OLD

4612
02:40:54,400 --> 02:40:59,000
WILL NOT LOSE HER FATHER TO

4613
02:40:59,000 --> 02:41:00,480
A.L.S., AND EFFECTIVE TREATMENTS

4614
02:41:00,480 --> 02:41:02,240
WILL BE AVAILABLE TO ALL TO END

4615
02:41:02,240 --> 02:41:03,120
THE SCOURGE THAT IS A.L.S.

4616
02:41:03,120 --> 02:41:05,440
THANK YOU.

4617
02:41:05,440 --> 02:41:08,560
>>CAN I HAVE THE NEXT
SLIDE,

4618
02:41:08,560 --> 02:41:09,480
PLEASE.

4619
02:41:09,480 --> 02:41:12,680
SO, ELLYN TALKED ABOUT THE ROLE

4620
02:41:12,680 --> 02:41:17,520
OF THE A.L.S. EXPERIENCE

4621
02:41:17,520 --> 02:41:19,680
EXPERTS, SUCH AS MYSELF.

4622
02:41:19,680 --> 02:41:22,800
WE WERE INVOLVED IN ALL STAGES

4623
02:41:22,800 --> 02:41:26,560
OF THE DEVELOPMENT OF THE

4624
02:41:26,560 --> 02:41:29,800
STRATEGIC PLAN, FROM INITIATION

4625
02:41:29,800 --> 02:41:35,080
TO BEING HERE TODAY, TO ACTUALLY

4626
02:41:35,080 --> 02:41:36,240
PRESENT TO YOU.

4627
02:41:36,240 --> 02:41:38,880
WE WERE INTIMATELY INVOLVED IN

4628
02:41:38,880 --> 02:41:41,800
THE DOCUMENT YOU RECEIVED, WHICH

4629
02:41:41,800 --> 02:41:46,080
IS A PROPOSED FINAL DRAFT PLAN,

4630
02:41:46,080 --> 02:41:49,800
SO WE WERE INVOLVED WITH ALL

4631
02:41:49,800 --> 02:41:51,880
ASPECTS IN DEVELOPMENT OF THIS

4632
02:41:51,880 --> 02:41:53,280
DOCUMENT.

4633
02:41:53,280 --> 02:41:56,120
AND MORE IMPORTANT IS, WE WERE

4634
02:41:56,120 --> 02:41:58,440
WELL RECEIVED.

4635
02:41:58,440 --> 02:42:03,640
I TALKED TO ALL OF THE A.L.S.

4636
02:42:03,640 --> 02:42:09,800
EXPERIENCE EXPERTS INVOLVED WITH

4637
02:42:09,800 --> 02:42:11,520
THE WORKING GROUPS AND THE

4638
02:42:11,520 --> 02:42:12,400
STEERING COMMITTEE.

4639
02:42:12,400 --> 02:42:15,680
ALL WERE WELL RECEIVED.

4640
02:42:15,680 --> 02:42:17,960
THEY LISTENED, THEY DISCUSSED,

4641
02:42:17,960 --> 02:42:22,120
AND THEY ADDED VALUABLE INPUT TO

4642
02:42:22,120 --> 02:42:24,920
THE PROCESS, AND AS ELLYN HAS

4643
02:42:24,920 --> 02:42:30,200
STATED BEFORE, WE DID WORK

4644
02:42:30,200 --> 02:42:33,400
INVOLVED WITH ALL WORKING GROUP

4645
02:42:33,400 --> 02:42:33,800
MEETINGS.

4646
02:42:33,800 --> 02:42:35,840
MOST MEETINGS WERE HELD

4647
02:42:35,840 --> 02:42:38,000
VIRTUALLY, AND WE PARTICIPATED

4648
02:42:38,000 --> 02:42:40,040
IN ALL OF THEM.

4649
02:42:40,040 --> 02:42:44,640
NEXT SLIDE, PLEASE.

4650
02:42:44,640 --> 02:42:47,040
SO, WHERE DO WE GO FROM HERE?

4651
02:42:47,040 --> 02:42:50,280
TALKING TO THE PEOPLE IN THE

4652
02:42:50,280 --> 02:42:53,040
A.L.S. COMMUNITY, DR. SATTLER

4653
02:42:53,040 --> 02:42:57,560
TOUCHED ON THIS ALREADY, WE ARE

4654
02:42:57,560 --> 02:43:00,720
PROPOSING SEVERAL ELEMENTS UPON

4655
02:43:00,720 --> 02:43:03,600
APPROVAL OF THE STRATEGIC PLAN.

4656
02:43:03,600 --> 02:43:08,360
WE NEED TO FIRST DISSEMINATE,

4657
02:43:08,360 --> 02:43:12,200
EDUCATE, AND PROMOTE THIS PLAN

4658
02:43:12,200 --> 02:43:14,640
FOR EVERYBODY IN THE A.L.S.

4659
02:43:14,640 --> 02:43:17,440
COMMUNITY, NOT JUST PATIENTS,

4660
02:43:17,440 --> 02:43:21,880
NOT JUST RESEARCHERS, NOT JUST

4661
02:43:21,880 --> 02:43:22,520
CLINICIANS.

4662
02:43:22,520 --> 02:43:24,760
WE NEED TO EDUCATE EVERYBODY IN

4663
02:43:24,760 --> 02:43:27,160
THE COMMUNITY.

4664
02:43:27,160 --> 02:43:29,920
RAISE AWARENESS, AS I WOULD SAY.

4665
02:43:29,920 --> 02:43:32,800
NUMBER ONE.

4666
02:43:32,800 --> 02:43:34,920
NUMBER TWO, DR. SATTLER

4667
02:43:34,920 --> 02:43:37,160
MENTIONED THIS ABOUT AN

4668
02:43:37,160 --> 02:43:41,560
IMPLEMENTATION WORKING GROUP TO

4669
02:43:41,560 --> 02:43:45,960
MONITOR THE SUCCESS, CHALLENGES

4670
02:43:45,960 --> 02:43:50,200
AND OPPORTUNITIES WITHIN THE

4671
02:43:50,200 --> 02:43:52,240
STRATEGIC PLAN TO DETERMINE IF

4672
02:43:52,240 --> 02:43:57,640
THE GOALS ARE GOING TO BE MET OR

4673
02:43:57,640 --> 02:43:59,560
IF GOALS ARE ACTUALLY MET OR IF

4674
02:43:59,560 --> 02:44:01,520
WE'RE A LONG WAY TO MEETING

4675
02:44:01,520 --> 02:44:03,400
CERTAIN GOALS.

4676
02:44:03,400 --> 02:44:07,240
AND LAST BUT NOT LEAST, MANY OF

4677
02:44:07,240 --> 02:44:12,920
YOU AT THIS MEETING KNOW THAT

4678
02:44:12,920 --> 02:44:13,960
A.L.S. EXPERIENCE EXPERTS ARE

4679
02:44:13,960 --> 02:44:20,000
THE EYES AND EARS, SO TO SPEAK,

4680
02:44:20,000 --> 02:44:21,760
OF THE A.L.S. COMMUNITY.

4681
02:44:21,760 --> 02:44:23,320
WE HEAR MUCH OF WHAT'S GOING ON

4682
02:44:23,320 --> 02:44:29,720
OUT THERE, AND WE CAN DETERMINE

4683
02:44:29,720 --> 02:44:31,120
HOW THE PLAN NEEDS TO BE

4684
02:44:31,120 --> 02:44:33,760
ADAPTED, CHANGED OR MADE

4685
02:44:33,760 --> 02:44:38,240
STREAMLINED BASED ON CHALLENGES

4686
02:44:38,240 --> 02:44:41,080
AND OPPORTUNITIES IN THE

4687
02:44:41,080 --> 02:44:41,560
CHANGING ENVIRONMENT.

4688
02:44:41,560 --> 02:44:44,280
SO WE CAN HELP THIS PROCESS MOVE

4689
02:44:44,280 --> 02:44:46,320
ALONG.

4690
02:44:46,320 --> 02:44:50,040
OVERALL, IT WAS A GREAT

4691
02:44:50,040 --> 02:44:50,360
EXPERIENCE.

4692
02:44:50,360 --> 02:44:54,200
LAST SLIDE, PLEASE.

4693
02:44:54,200 --> 02:44:56,680
MOST OF YOU KNOW THIS IS A

4694
02:44:56,680 --> 02:45:00,040
COMMENT OR A STATEMENT FROM

4695
02:45:00,040 --> 02:45:03,040
MICHAEL J. FOX THAT'S FOCUSED ON

4696
02:45:03,040 --> 02:45:05,240
PARKINSON'S DISEASE, BUT IT'S

4697
02:45:05,240 --> 02:45:07,440
VERY RELEVANT TO THE A.L.S.

4698
02:45:07,440 --> 02:45:09,360
COMMUNITY.

4699
02:45:09,360 --> 02:45:13,400
THERE ARE MANY, MANY

4700
02:45:13,400 --> 02:45:16,440
RESEARCHERS, CLINICIANS,

4701
02:45:16,440 --> 02:45:19,400
ACADEMICIAN EXPERTS OUT THERE

4702
02:45:19,400 --> 02:45:23,000
WHO ARE EXPERTS IN A.L.S.

4703
02:45:23,000 --> 02:45:25,960
IN ADDITION, WE REALLY WANT TO

4704
02:45:25,960 --> 02:45:31,840
THANK NIH, AND NINDS FOR RAISING

4705
02:45:31,840 --> 02:45:37,080
AWARENESS OF THE ROLE OF A.L.S.

4706
02:45:37,080 --> 02:45:41,120
EXPERIENCE EXPERTS, PALS, CALS,

4707
02:45:41,120 --> 02:45:42,560
GENE CARRIERS.

4708
02:45:42,560 --> 02:45:45,280
WE ARE EXPERTS ALSO, AND

4709
02:45:45,280 --> 02:45:49,640
LISTENING TO US HAS MADE THIS

4710
02:45:49,640 --> 02:45:51,960
STRATEGIC PLAN EVEN MORE

4711
02:45:51,960 --> 02:45:55,560
VALUABLE TO THE A.L.S.

4712
02:45:55,560 --> 02:45:56,000
COMMUNITY.

4713
02:45:56,000 --> 02:46:00,360
SO THANK YOU VERY MUCH, NIH AND

4714
02:46:00,360 --> 02:46:03,800
NINDS, FOR ALL YOU'VE DONE TO

4715
02:46:03,800 --> 02:46:08,000
RAISE AWARENESS OF A.L.S. AND

4716
02:46:08,000 --> 02:46:09,440
UTILIZE PEOPLE WHO ARE AFFECTED

4717
02:46:09,440 --> 02:46:11,720
BY THIS AWFUL DISEASE.

4718
02:46:11,720 --> 02:46:16,440
THANK YOU.

4719
02:46:16,440 --> 02:46:24,880
DAN, I'LL TURN IT OVER TO YOU.

4720
02:46:24,880 --> 02:46:26,920
>>YOU'D THINK BY NOW I'D
LEARN

4721
02:46:26,920 --> 02:46:27,680
TO UNMUTE MYSELF.

4722
02:46:27,680 --> 02:46:29,040
THANK YOU VERY MUCH, LAYNE AND

4723
02:46:29,040 --> 02:46:30,200
ELLYN.

4724
02:46:30,200 --> 02:46:33,560
AND RITA AND BOB AND AMELIE.

4725
02:46:33,560 --> 02:46:35,840
I THOUGHT MAYBE I WOULD JUST

4726
02:46:35,840 --> 02:46:39,120
GIVE A LITTLE BIT OF BACKGROUND

4727
02:46:39,120 --> 02:46:44,080
ON MY CONNECTION TO A.L.S.

4728
02:46:44,080 --> 02:46:49,120
MY FATHER AND UNCLE BOTH DIED OF

4729
02:46:49,120 --> 02:46:51,160
A.L.S.

4730
02:46:51,160 --> 02:46:54,440
MY UNCLE IN 2010.

4731
02:46:54,440 --> 02:46:56,760
AND AFTER MY UNCLE DIED, WHICH

4732
02:46:56,760 --> 02:46:59,000
WAS AFTER MY FATHER DIED, I

4733
02:46:59,000 --> 02:47:01,320
DECIDED THAT I HAD TO DO

4734
02:47:01,320 --> 02:47:02,400
SOMETHING.

4735
02:47:02,400 --> 02:47:05,040
BECAUSE CLEARLY, IT WAS

4736
02:47:05,040 --> 02:47:11,040
HEREDITARY IN MY FAMILY.

4737
02:47:11,040 --> 02:47:13,080
THEY ALSO, BY THE WAY, HAD A

4738
02:47:13,080 --> 02:47:19,040
FIRST COUSIN WHO DIED OF FTE,

4739
02:47:19,040 --> 02:47:20,320
THE SAME GENETIC MUTATION.

4740
02:47:20,320 --> 02:47:23,920
SO AT THAT POINT IN 2011, 2012,

4741
02:47:23,920 --> 02:47:26,520
I CREATED TARGET A.L.S.

4742
02:47:26,520 --> 02:47:30,040
AND TARGET A.L.S.' MISSION, AND

4743
02:47:30,040 --> 02:47:34,080
I'LL BE VERY BRIEF, IS TO

4744
02:47:34,080 --> 02:47:35,480
ACCELERATE RESEARCH INTO

4745
02:47:35,480 --> 02:47:39,200
CLINICAL TRIALS.

4746
02:47:39,200 --> 02:47:40,800
EXCLUSIVELY RESEARCH-BASED.

4747
02:47:40,800 --> 02:47:43,480
THE WAY WE GO ABOUT IT IS IN A

4748
02:47:43,480 --> 02:47:45,240
SERIES OF INITIATIVES.

4749
02:47:45,240 --> 02:47:49,600
ONE IS WE ONLY FUND

4750
02:47:49,600 --> 02:47:53,200
MULTIDISCIPLINARY CONSORTIA OF

4751
02:47:53,200 --> 02:47:57,720
RESEARCHERS, OFTEN LED BY

4752
02:47:57,720 --> 02:48:01,440
INDUSTRY INVESTIGATORS, AND SO

4753
02:48:01,440 --> 02:48:04,760
THE COMBINATION OF INDUSTRY AND

4754
02:48:04,760 --> 02:48:08,080
ACADEMIA, WE THINK IS VERY

4755
02:48:08,080 --> 02:48:08,960
POWERFUL.

4756
02:48:08,960 --> 02:48:13,320
SECONDLY WHAT WE DO IS WE FUND A

4757
02:48:13,320 --> 02:48:16,920
SUITE OF CORE SCIENTIFIC

4758
02:48:16,920 --> 02:48:19,520
RESOURCES THAT ANY RESEARCHER

4759
02:48:19,520 --> 02:48:23,800
AROUND THE WORLD CAN DRAW ON.

4760
02:48:23,800 --> 02:48:29,480
AND THOSE INCLUDE ANTIGENS,

4761
02:48:29,480 --> 02:48:32,240
LONGITUDINAL BIOFLUIDS,

4762
02:48:32,240 --> 02:48:35,160
POSTMORTEM TISSUE SAMPLES, STEM

4763
02:48:35,160 --> 02:48:37,560
CELLS, ANIMAL MODELS, VIRAL

4764
02:48:37,560 --> 02:48:39,520
VECTORS, AND THE LIKE.

4765
02:48:39,520 --> 02:48:41,480
THOSE THINGS HAVE BEEN ACCESSED

4766
02:48:41,480 --> 02:48:43,120
ON SOMETHING LIKE A THOUSAND

4767
02:48:43,120 --> 02:48:45,080
DIFFERENT PROJECTS OVER THE LAST

4768
02:48:45,080 --> 02:48:49,240
SIX OR SEVEN YEARS.

4769
02:48:49,240 --> 02:48:52,520
THIRD, WE FOCUS ON ENGAGING

4770
02:48:52,520 --> 02:48:54,040
INDUSTRY IN EVERYTHING THAT WE

4771
02:48:54,040 --> 02:48:58,880
DO.

4772
02:48:58,880 --> 02:49:00,720
AS I MENTIONED, THEY'VE LED

4773
02:49:00,720 --> 02:49:04,920
ABOUT 50% OF OUR CONSORTIA.

4774
02:49:04,920 --> 02:49:08,960
WE'VE HAD FUNDED 53 DIFFERENT

4775
02:49:08,960 --> 02:49:10,920
CONSORTIA, OF WHICH, BY THE WAY,

4776
02:49:10,920 --> 02:49:12,960
60% HAVE LED TO CONTINUING DRUG

4777
02:49:12,960 --> 02:49:16,160
DISCOVERY PROGRAMS AT BIOTECH OR

4778
02:49:16,160 --> 02:49:19,400
PHARMA COMPANIES.

4779
02:49:19,400 --> 02:49:20,600
 AND HAVE LED TO

4780
02:49:20,600 --> 02:49:22,520
SIX CLINICAL TRIALS.

4781
02:49:22,520 --> 02:49:24,040
WE ALSO HAVE THEM ON OUR

4782
02:49:24,040 --> 02:49:25,080
INDEPENDENT REVIEW COMMITTEE,

4783
02:49:25,080 --> 02:49:28,360
ABOUT 50%, AND ROUGHLY 50% OF

4784
02:49:28,360 --> 02:49:29,360
OUR BOARD.

4785
02:49:29,360 --> 02:49:35,040
WE ARE CURRENTLY ENGAGED WITH,

4786
02:49:35,040 --> 02:49:38,120
ON AN ACTIVE BASIS, 123

4787
02:49:38,120 --> 02:49:43,440
DIFFERENT BIOTECH, PHARMA, AND

4788
02:49:43,440 --> 02:49:45,080
BC FIRMS, WHICH IS A REAL

4789
02:49:45,080 --> 02:49:47,040
TESTAMENT TO THE PROGRESS THAT

4790
02:49:47,040 --> 02:49:51,760
HAS BEEN MADE.

4791
02:49:51,760 --> 02:49:53,600
THE FACT THAT WE BRING PEOPLE

4792
02:49:53,600 --> 02:49:58,440
TOGETHER HAS GIVEN US THE

4793
02:49:58,440 --> 02:49:59,840
CREDIBILITY LEAD INDUSTRY-WIDE

4794
02:49:59,840 --> 02:50:00,920
INITIATIVES LIKE THE SEARCH FOR

4795
02:50:00,920 --> 02:50:05,400
A BIOMARKER.

4796
02:50:05,400 --> 02:50:10,440
AND SO WE BELIEVE WE'VE

4797
02:50:10,440 --> 02:50:11,960
DEVELOPED A SUCCESSFUL MODEL.

4798
02:50:11,960 --> 02:50:14,360
NOW, AS BOB MENTIONED, BOB BROWN

4799
02:50:14,360 --> 02:50:20,600
MENTIONED, IN LATE 2021, I WAS

4800
02:50:20,600 --> 02:50:22,680
DIAGNOSED WITH A.L.S.

4801
02:50:22,680 --> 02:50:24,440
WEIRDLY, AND BOB CAN'T EXPLAIN

4802
02:50:24,440 --> 02:50:26,920
THIS, I DO NOT HAVE THE SAME

4803
02:50:26,920 --> 02:50:31,320
GENETIC MUTATION AS MY UNCLE,

4804
02:50:31,320 --> 02:50:34,400
FATHER, AND THEIR FIRST COUSIN.

4805
02:50:34,400 --> 02:50:36,240
I DON'T HAVE ONE THAT HAS BEEN

4806
02:50:36,240 --> 02:50:37,680
IDENTIFIED YET.

4807
02:50:37,680 --> 02:50:40,160
BUT WHEN I WAS DIAGNOSED, THEY

4808
02:50:40,160 --> 02:50:42,240
SAID, YOU KNOW, MY LAST MISSION

4809
02:50:42,240 --> 02:50:46,160
IS GOING TO BE TO DRAMATICALLY

4810
02:50:46,160 --> 02:50:49,680
SCALE UP TARGET A.L.S.

4811
02:50:49,680 --> 02:50:52,080
AND I SET A GOAL OF RAISING

4812
02:50:52,080 --> 02:50:55,600
$250 MILLION, AND I WILL JUST

4813
02:50:55,600 --> 02:50:58,080
SAY I'M WELL ON THE WAY TO

4814
02:50:58,080 --> 02:51:02,880
ACHIEVING THAT GOAL.

4815
02:51:02,880 --> 02:51:04,760
LOOK, I WAS REALLY HONORED TO BE

4816
02:51:04,760 --> 02:51:10,880
PART OF THE NIH NINDS STRATEGIC

4817
02:51:10,880 --> 02:51:12,280
PLANNING PROCESS, AND I'VE BEEN

4818
02:51:12,280 --> 02:51:18,400
ASKED JUST TO COMMENT ON THAT

4819
02:51:18,400 --> 02:51:19,720
PROCESS, AND I THINK WHERE WE GO

4820
02:51:19,720 --> 02:51:24,280
FROM HERE.

4821
02:51:24,280 --> 02:51:25,600
YOU KNOW, I THINK MOST OF YOU

4822
02:51:25,600 --> 02:51:28,200
KNOW THAT OVER THE LAST 10

4823
02:51:28,200 --> 02:51:31,480
YEARS, THERE HAS BEEN REALLY

4824
02:51:31,480 --> 02:51:33,600
REMARKABLE PROGRESS MADE IN

4825
02:51:33,600 --> 02:51:36,760
A.L.S. RESEARCH.

4826
02:51:36,760 --> 02:51:38,400
WE UNDERSTAND DRAMATICALLY

4827
02:51:38,400 --> 02:51:41,040
BETTER THE BIOLOGY OF THE

4828
02:51:41,040 --> 02:51:44,840
DISEASE, THE GENETICS OF THE

4829
02:51:44,840 --> 02:51:45,080
DISEASE.

4830
02:51:45,080 --> 02:51:49,360
WE HAVE DRAWN IN HUNDREDS OF NEW

4831
02:51:49,360 --> 02:51:51,880
INVESTIGATORS, BOTH IN INDUSTRY

4832
02:51:51,880 --> 02:51:57,120
AND IN ACADEMIA.

4833
02:51:57,120 --> 02:52:01,480
WE HAVE ENGAGEMENT BY BIOTECH

4834
02:52:01,480 --> 02:52:05,000
AND PHARMA AND VC, I THINK HAS

4835
02:52:05,000 --> 02:52:08,200
SURPASSED EVERYONE'S

4836
02:52:08,200 --> 02:52:11,440
EXPECTATIONS, AND WE ARE MOVING

4837
02:52:11,440 --> 02:52:14,160
FROM RESEARCH INTO THE CLINIC.

4838
02:52:14,160 --> 02:52:18,880
AND SO THE PIECES ARE BEING PUT

4839
02:52:18,880 --> 02:52:21,600
TOGETHER TO ABSOLUTELY BE ABLE

4840
02:52:21,600 --> 02:52:23,480
TO FIND TREATMENTS FOR PEOPLE.

4841
02:52:23,480 --> 02:52:28,080
WE'RE NOT THERE YET.

4842
02:52:28,080 --> 02:52:29,680
BUT WE ARE GETTING CLOSER AND

4843
02:52:29,680 --> 02:52:29,920
CLOSER.

4844
02:52:29,920 --> 02:52:32,760
A BIG PART OF THE SUCCESS THAT

4845
02:52:32,760 --> 02:52:37,600
WE HAVE SEEN OVER THE LAST

4846
02:52:37,600 --> 02:52:41,640
DECADE HAS BEEN FROM NIH AND

4847
02:52:41,640 --> 02:52:42,280
NINDS.

4848
02:52:42,280 --> 02:52:46,240
YOU KNOW, THE TOTAL FUNDING OVER

4849
02:52:46,240 --> 02:52:49,400
THAT PAST DECADE FROM I THINK

4850
02:52:49,400 --> 02:52:54,440
2014 TO 2022 WENT FROM

4851
02:52:54,440 --> 02:52:57,600
$48 MILLION TO ABOUT

4852
02:52:57,600 --> 02:52:58,280
$124 MILLION.

4853
02:52:58,280 --> 02:53:02,080
THERE'S BEEN INCREASED

4854
02:53:02,080 --> 02:53:03,760
PHILANTHROPY, INCLUDING THE ICE

4855
02:53:03,760 --> 02:53:07,120
BUCKET CHALLENGE AND OTHER

4856
02:53:07,120 --> 02:53:07,560
ORGANIZATIONS.

4857
02:53:07,560 --> 02:53:10,400
AND THERE IS AN INCREASING

4858
02:53:10,400 --> 02:53:15,800
AMOUNT OF HOPE.

4859
02:53:15,800 --> 02:53:17,280
BUT I THINK WHAT IS MOST

4860
02:53:17,280 --> 02:53:19,360
IMPORTANT IS THAT THERE'S BEEN

4861
02:53:19,360 --> 02:53:22,080
REMARKABLE COLLABORATION AMONG

4862
02:53:22,080 --> 02:53:25,360
ALL OF THE CONSTITUENTS IN

4863
02:53:25,360 --> 02:53:28,120
A.L.S. RESEARCH.

4864
02:53:28,120 --> 02:53:32,120
AND THAT INCLUDES OBVIOUSLY

4865
02:53:32,120 --> 02:53:37,760
PATIENTS, CLINICIANS, ACADEMICS,

4866
02:53:37,760 --> 02:53:41,200
INDUSTRY, NON-PROFIT, AND, OF

4867
02:53:41,200 --> 02:53:41,880
COURSE, GOVERNMENT, WHO HAVE

4868
02:53:41,880 --> 02:53:47,480
BEEN WORKING TOGETHER WITH A --

4869
02:53:47,480 --> 02:53:49,560
I WON'T SAY A COMPLETELY COMMON

4870
02:53:49,560 --> 02:53:52,600
PURPOSE, BUT WITH A SENSE OF

4871
02:53:52,600 --> 02:53:57,200
HOMOMENTUM AND THE FEELING THATF

4872
02:53:57,200 --> 02:53:58,840
WE WORK TOGETHER, WE CAN

4873
02:53:58,840 --> 02:54:00,880
ACTUALLY BEGIN TO SOLVE THESE

4874
02:54:00,880 --> 02:54:03,960
PROBLEMS.

4875
02:54:03,960 --> 02:54:05,160
THE STRATEGIC PLANNING PROCESS

4876
02:54:05,160 --> 02:54:08,880
THAT HAS ALREADY BEEN DESCRIBED

4877
02:54:08,880 --> 02:54:12,280
FOR YOU OVER THIS LAST YEAR OR

4878
02:54:12,280 --> 02:54:17,320
SO, I THINK IS REALLY A

4879
02:54:17,320 --> 02:54:20,920
REFLECTION, IT'S MAYBE THE

4880
02:54:20,920 --> 02:54:21,880
APOTHEOSIS OF THAT SORT OF LEVEL

4881
02:54:21,880 --> 02:54:22,880
OF COLLABORATION.

4882
02:54:22,880 --> 02:54:26,840
BECAUSE ALL PARTIES ACTUALLY

4883
02:54:26,840 --> 02:54:31,640
WORK TOGETHER AS LAYNE AND ELLYN

4884
02:54:31,640 --> 02:54:32,480
HAVE DESCRIBED IN A WAY THAT I

4885
02:54:32,480 --> 02:54:36,400
DON'T THINK THEY EVER HAVE

4886
02:54:36,400 --> 02:54:42,520
BEFORE, TO ENSURE THAT WE HAVE A

4887
02:54:42,520 --> 02:54:43,760
NORTH STAR WITH THE GOAL

4888
02:54:43,760 --> 02:54:47,400
ULTIMATELY OF SAVING EVERYONE'S

4889
02:54:47,400 --> 02:54:48,600
LIFE.

4890
02:54:48,600 --> 02:54:51,200
AND THIS IS A DISEASE WHERE 1 IN

4891
02:54:51,200 --> 02:54:54,800
400 PEOPLE WILL DIE OF A.L.S.

4892
02:54:54,800 --> 02:55:01,520
UNLESS WE FIND TREATMENTS.

4893
02:55:01,520 --> 02:55:04,800
SO I THINK WHAT WE HAVE DONE

4894
02:55:04,800 --> 02:55:06,960
WITH AN UNUSUAL AMOUNT OF

4895
02:55:06,960 --> 02:55:09,920
CONSENSUS IS LAID OUT THAT PATH.

4896
02:55:09,920 --> 02:55:13,120
NOW IN MANY CASES OF THE 15

4897
02:55:13,120 --> 02:55:15,640
DIFFERENT INITIATIVES, WE ARE ON

4898
02:55:15,640 --> 02:55:19,360
THAT PATH, BUT THE QUESTION IS,

4899
02:55:19,360 --> 02:55:21,080
HOW DO WE ACCELERATE IT?

4900
02:55:21,080 --> 02:55:24,880
AND HAVING A CLEAR PLAN, WHICH

4901
02:55:24,880 --> 02:55:30,960
THE FIELD AGREES WITH, IS REALLY

4902
02:55:30,960 --> 02:55:33,440
CRITICAL TO ACHIEVING THAT GOAL.

4903
02:55:33,440 --> 02:55:40,120
NOW, THE QUESTION IS, HAVING

4904
02:55:40,120 --> 02:55:43,640
THIS ALIGNMENT, HOW DO WE

4905
02:55:43,640 --> 02:55:44,600
ACTUALLY OPERATIONALIZE THE PLAN

4906
02:55:44,600 --> 02:55:46,560
GOING FORWARD?

4907
02:55:46,560 --> 02:55:48,200
RIGHT?

4908
02:55:48,200 --> 02:55:50,520
AND, YOU KNOW, LOOK, FIRST OF

4909
02:55:50,520 --> 02:55:55,120
ALL, HAVING MORE MONEY WHICH THE

4910
02:55:55,120 --> 02:55:58,400
ACT FOR A.L.S. GIVES US THE

4911
02:55:58,400 --> 02:56:02,120
POTENTIAL TO DO, IS CERTAINLY AN

4912
02:56:02,120 --> 02:56:05,720
IMPORTANT PART OF THAT.

4913
02:56:05,720 --> 02:56:11,640
THE ACT FOR A.L.S. ALLOCATES UP

4914
02:56:11,640 --> 02:56:13,160
TO $100 MILLION A YEAR.

4915
02:56:13,160 --> 02:56:16,520
SOME OF THAT WILL CERTAINLY GO

4916
02:56:16,520 --> 02:56:20,160
TOTO, EXPANDED ACCESS PROGRAMS,

4917
02:56:20,160 --> 02:56:21,600
PROBABLY THE MAJORITY OVER TIME

4918
02:56:21,600 --> 02:56:22,280
WILL GO TO IT.

4919
02:56:22,280 --> 02:56:24,880
BUT THEN THERE WILL BE

4920
02:56:24,880 --> 02:56:27,280
SIGNIFICANT FUNDS LEFT OVER FOR

4921
02:56:27,280 --> 02:56:30,960
PARTNERSHIPS AND COLLABORATIONS

4922
02:56:30,960 --> 02:56:33,640
UNDER THE ACT, ARTICLE 3 AND

4923
02:56:33,640 --> 02:56:41,440
ARTICLE 5.

4924
02:56:41,440 --> 02:56:42,640
BUT WHAT I'VE SEEN,

4925
02:56:42,640 --> 02:56:43,920
INTERESTINGLY, AND THIS FOLLOWS

4926
02:56:43,920 --> 02:56:45,480
UP ON SOME OF THE COMMENTS THAT

4927
02:56:45,480 --> 02:56:49,720
LAYNE MADE, IS THAT NIH AND

4928
02:56:49,720 --> 02:56:53,200
NINDS, WITH THIS AGREEMENT ON

4929
02:56:53,200 --> 02:56:56,960
WHAT TO DO, HAVE BEEN ACTING

4930
02:56:56,960 --> 02:56:59,000
AFTER WE'VE DEVELOPED THE PLAN

4931
02:56:59,000 --> 02:57:04,520
WITH A SENSE OF URGENCY THAT I

4932
02:57:04,520 --> 02:57:06,680
THINK BEFITS THE NATURE OF THIS

4933
02:57:06,680 --> 02:57:10,640
DISEASE.

4934
02:57:10,640 --> 02:57:13,880
80% OF PATIENTS DIE WITHIN FIVE

4935
02:57:13,880 --> 02:57:14,440
YEARS.

4936
02:57:14,440 --> 02:57:17,920
AND NOW HAVING AGREED ON AN

4937
02:57:17,920 --> 02:57:19,480
APPROACH, A SET OF INITIATIVES,

4938
02:57:19,480 --> 02:57:25,080
A SET OF GOALS, I THINK WHAT I'M

4939
02:57:25,080 --> 02:57:29,560
OBSERVING IS THAT THERE IS A

4940
02:57:29,560 --> 02:57:34,360
INTENSE SENSE OF URGENCY THAT IS

4941
02:57:34,360 --> 02:57:39,040
BEING APPLIED TO AT LEAST

4942
02:57:39,040 --> 02:57:41,240
CERTAIN OF SOME OF THESE

4943
02:57:41,240 --> 02:57:43,320
INITIATIVES.

4944
02:57:43,320 --> 02:57:46,920
NOW, I SERVED IN GOVERNMENT, AS

4945
02:57:46,920 --> 02:57:47,560
BOB SAID.

4946
02:57:47,560 --> 02:57:49,280
I WAS RESPONSIBLE FOR THE

4947
02:57:49,280 --> 02:57:53,640
REBUILDING OF NEW YORK AFTER

4948
02:57:53,640 --> 02:57:56,280
9/11.

4949
02:57:56,280 --> 02:57:59,960
AND ONE THING I LEARNED ABOUT

4950
02:57:59,960 --> 02:58:03,480
GOVERNMENT IS THAT YOU HAVE TO

4951
02:58:03,480 --> 02:58:06,560
OPERATE IN GOVERNMENT ON TWO

4952
02:58:06,560 --> 02:58:09,600
SPEEDS AT THE SAME TIME.

4953
02:58:09,600 --> 02:58:13,040
YOU NEED TO BE PATIENT, BECAUSE

4954
02:58:13,040 --> 02:58:16,920
THERE ARE SO MANY PARTIES TO BE

4955
02:58:16,920 --> 02:58:19,800
TOUCHED AND INCLUDED AND IF YOU

4956
02:58:19,800 --> 02:58:22,520
NEED TO COLLABORATE AMONG THOSE,

4957
02:58:22,520 --> 02:58:24,680
IT CRITICAL THAT YOU BE PATIENT,

4958
02:58:24,680 --> 02:58:27,200
BUT AT THE SAME TIME, YOU HAVE

4959
02:58:27,200 --> 02:58:29,920
TO ACT WITH A SENSE OF URGENCY

4960
02:58:29,920 --> 02:58:35,080
AT ALL TIMES.

4961
02:58:35,080 --> 02:58:39,160
AND WHAT I AM SEEING OUT OF

4962
02:58:39,160 --> 02:58:41,520
NINDH, NINDS AND NIH, IS THAT

4963
02:58:41,520 --> 02:58:45,160
SENSE OF URGENCY, THAT THIS IS A

4964
02:58:45,160 --> 02:58:48,000
DISEASE AT THIS MOMENT THAT WE

4965
02:58:48,000 --> 02:58:52,480
CAN TACKLE WITH ENOUGH FOCUS,

4966
02:58:52,480 --> 02:58:56,520
ENOUGH RESOURCES, AND ENOUGH

4967
02:58:56,520 --> 02:58:57,640
COLLABORATION, AND THAT IS WHY I

4968
02:58:57,640 --> 02:59:03,120
AM ACTUALLY SO HOPEFUL.

4969
02:59:03,120 --> 02:59:05,120
SO AGAIN, I WAS TRULY HONORED TO

4970
02:59:05,120 --> 02:59:08,160
BE A PART OF THIS PROCESS, AND

4971
02:59:08,160 --> 02:59:12,840
EXCITED HOPEFULLY TO BE A PART

4972
02:59:12,840 --> 02:59:13,960
OF MAKING IT HAPPEN IN THE

4973
02:59:13,960 --> 02:59:14,160
FUTURE.

4974
02:59:14,160 --> 02:59:17,800
THANK YOU.

4975
02:59:17,800 --> 02:59:23,800
>>THANK YOU, DO DON, AND
THANKU

4976
02:59:23,800 --> 02:59:25,040
FOR A REALLY EXCELLENT SYNOPSIS

4977
02:59:25,040 --> 02:59:26,520
OF THE PLAN AND ALSO YOUR

4978
02:59:26,520 --> 02:59:27,520
IMPORTANT PERSPECTIVE, AND OF

4979
02:59:27,520 --> 02:59:28,720
COURSE THE QUESTIONS, WHAT COMES

4980
02:59:28,720 --> 02:59:29,040
NEXT.

4981
02:59:29,040 --> 02:59:30,360
SO I THINK WE HAVE A LITTLE BIT

4982
02:59:30,360 --> 02:59:32,680
OF TIME FOR QUESTIONS, I KNOW WE

4983
02:59:32,680 --> 02:59:34,320
ALSO THEN HAVE TO INVITE OUR

4984
02:59:34,320 --> 02:59:35,840
NEXT SPEAKER BUT IF ANYONE HAS

4985
02:59:35,840 --> 02:59:36,600
QUESTIONS, PLEASE RAISE YOUR

4986
02:59:36,600 --> 02:59:38,600
HANDS, AND I THINK BOB YOU ALSO

4987
02:59:38,600 --> 02:59:39,600
NEED A VOTE, RIGHT?

4988
02:59:39,600 --> 02:59:40,320
>>YES.

4989
02:59:40,320 --> 02:59:42,120
I ACTUALLY DIDN'T REALIZE WE

4990
02:59:42,120 --> 02:59:44,640
NEED A VOTE BUT WE CAN HAVE THAT

4991
02:59:44,640 --> 02:59:54,920
WHEN WE'RE DONE.

4992
02:59:56,640 --> 02:59:58,080
>>WE'RE LOOKING FOR A
VOTE TO

4993
02:59:58,080 --> 02:59:59,400
APPROVE THE STRATEGIC PLAN.

4994
02:59:59,400 --> 03:00:01,360
>>YES, SO WE'RE LOOKING
FOR A

4995
03:00:01,360 --> 03:00:03,800
MOTION TO APPROVE THE STRATEGIC

4996
03:00:03,800 --> 03:00:07,080
PLAN RECOMMENDATIONS, THIS IS

4997
03:00:07,080 --> 03:00:07,480
GOVERNMENT-SPEAK.

4998
03:00:07,480 --> 03:00:08,560
DOESN'T MEAN YOU NECESSARILY

4999
03:00:08,560 --> 03:00:09,800
AGREE WITH EVERY SINGLE ONE BUT

5000
03:00:09,800 --> 03:00:11,320
IT MEANS THAT YOU'VE HEARD AND

5001
03:00:11,320 --> 03:00:11,800
RECEIVED THEM.

5002
03:00:11,800 --> 03:00:13,280
>>SO MOVED.

5003
03:00:13,280 --> 03:00:13,880
>>SECOND?

5004
03:00:13,880 --> 03:00:14,560
>>SECOND.

5005
03:00:14,560 --> 03:00:15,560
>>SECOND.

5006
03:00:15,560 --> 03:00:17,360
>>THEN WE CAN VOTE IN THE
CHAT.

5007
03:00:17,360 --> 03:00:17,960
THANKS.

5008
03:00:17,960 --> 03:00:18,920
THANKS A LOT.

5009
03:00:18,920 --> 03:00:20,240
BACK TO YOU, AMELIE.

5010
03:00:20,240 --> 03:00:20,880
>>ALL RIGHT.

5011
03:00:20,880 --> 03:00:22,760
SO I'M GOING TO INTRODUCE OUR

5012
03:00:22,760 --> 03:00:31,400
NEXT SPEAKER AND THAT'S

5013
03:00:31,400 --> 03:00:33,080
DR. JACQUELINE CORRIGAN-CURAY,

5014
03:00:33,080 --> 03:00:35,880
PRINCIPAL DEPUTY CENTER

5015
03:00:35,880 --> 03:00:36,880
DIRECTOR, CENTER FOR DRUG

5016
03:00:36,880 --> 03:00:39,920
EVALUATION AND RESEARCH, FDA.

5017
03:00:39,920 --> 03:00:41,840
AND JACQUELINE IS GOING TO TALK

5018
03:00:41,840 --> 03:00:43,240
A LITTLE ABOUT FDA ACTIVITIES IN

5019
03:00:43,240 --> 03:00:46,320
THE CONTEXT OF ACT FOR A.L.S.

5020
03:00:46,320 --> 03:00:46,680
IMPLEMENTATIONS.

5021
03:00:46,680 --> 03:00:47,600
THANK YOU.

5022
03:00:47,600 --> 03:00:48,160
>>THANK YOU.

5023
03:00:48,160 --> 03:00:57,160
LET ME PULL UP MY SLIDES.

5024
03:00:57,160 --> 03:00:58,360
YOU SHOULD BE SEEING THEM ON THE

5025
03:00:58,360 --> 03:00:59,120
SCREEN RIGHT NOW.

5026
03:00:59,120 --> 03:01:02,760
FIRFIRST OF ALL CONGRATULATIONSN

5027
03:01:02,760 --> 03:01:04,080
THE STRATEGIC PLAN AND ALL THE

5028
03:01:04,080 --> 03:01:04,840
INPUT.

5029
03:01:04,840 --> 03:01:06,400
VERY IMPRESSIVE.

5030
03:01:06,400 --> 03:01:07,160
I'M GOING TO TURN AND TALK A

5031
03:01:07,160 --> 03:01:08,280
LITTLE BIT ABOUT WHAT OUR

5032
03:01:08,280 --> 03:01:09,800
ACTIVITIES ARE IN SUPPORT OF

5033
03:01:09,800 --> 03:01:11,120
IMPLEMENTING THE ACCELERATING

5034
03:01:11,120 --> 03:01:13,000
ACCESS TO CRITICAL THERAPIES FOR

5035
03:01:13,000 --> 03:01:19,560
A.L.S. ACT.

5036
03:01:19,560 --> 03:01:21,200
SO I'M GOING TO GIVE YOU A QUICK

5037
03:01:21,200 --> 03:01:22,640
OVERVIEW AND FOCUS ON WHERE

5038
03:01:22,640 --> 03:01:24,120
WE'RE RESPONSIBLE IN TERMS OF

5039
03:01:24,120 --> 03:01:27,560
THE GRANT PROGRAM, WORKING WITH

5040
03:01:27,560 --> 03:01:29,160
NIH ON THE PPP AS WELL AS THE

5041
03:01:29,160 --> 03:01:30,400
ACTION PLAN.

5042
03:01:30,400 --> 03:01:32,720
SO THIS IS JUST THE SECTION OF

5043
03:01:32,720 --> 03:01:34,600
THE ACT AS MANY OF YOU KNOW, NIH

5044
03:01:34,600 --> 03:01:36,600
TAKES A LEAD ON SECTION 2, THE

5045
03:01:36,600 --> 03:01:37,880
GRANTS FOR RESEARCH.

5046
03:01:37,880 --> 03:01:40,400
WE WERE ASKED TO COLLABORATE

5047
03:01:40,400 --> 03:01:42,480
WITH NIH IN THE PUBLIC-PRIVATE

5048
03:01:42,480 --> 03:01:44,080
PARTNERSHIP, AND THEN WE HAD OUR

5049
03:01:44,080 --> 03:01:47,760
OWN ACTIVITIES AROUND RARE

5050
03:01:47,760 --> 03:01:49,000
NEURODEGENERATIVE DISEASE ACTION

5051
03:01:49,000 --> 03:01:49,880
PLAN AND A GRANT PROGRAM, AND OF

5052
03:01:49,880 --> 03:01:52,080
COURSE THE ACT WILL BE EVALUATED

5053
03:01:52,080 --> 03:01:54,200
OR OUR PROGRESS UNDER IT WILL BE

5054
03:01:54,200 --> 03:01:56,040
EVALUATED BY THE GAO.

5055
03:01:56,040 --> 03:01:57,160
SO LET'S TALK A LITTLE BIT ABOUT

5056
03:01:57,160 --> 03:01:58,040
THE GRANT PROGRAM.

5057
03:01:58,040 --> 03:02:01,240
WE HAVE HAD A RARE DISEASE GRANT

5058
03:02:01,240 --> 03:02:02,800
PROGRAM FOR A NUMBER OF YEARS

5059
03:02:02,800 --> 03:02:06,800
WHERE WE FUND NATURAL HISTORY

5060
03:02:06,800 --> 03:02:10,200
STUDIES AS WELL AS SOMETIMES

5061
03:02:10,200 --> 03:02:11,440
CLINICAL TRIAL TRANSLATIONAL

5062
03:02:11,440 --> 03:02:11,720
RESEARCH.

5063
03:02:11,720 --> 03:02:14,960
THIS IS A NEW GRANT PROGRAM

5064
03:02:14,960 --> 03:02:17,160
FOCUSING ON A.L.S. AND OTHER

5065
03:02:17,160 --> 03:02:22,960
RARE NEURODEGENERATIVE DISEASES.

5066
03:02:22,960 --> 03:02:24,720
SO WE NEEDED TO DEFINE OUR

5067
03:02:24,720 --> 03:02:25,680
INVESTMENT PRIORITIES REACHING

5068
03:02:25,680 --> 03:02:27,960
OUT TO THE CENTERS FOR

5069
03:02:27,960 --> 03:02:29,160
REGULATORY SCIENCE, PRIORITIES

5070
03:02:29,160 --> 03:02:30,880
WE SAW IN DRUG DEVELOPMENT,

5071
03:02:30,880 --> 03:02:32,760
FIRST WITH OUR EE QIF LAN SEE

5072
03:02:32,760 --> 03:02:33,640
STUDIES FOR HE RAO MOTOR USE

5073
03:02:33,640 --> 03:02:34,640
CLINICAL OUT COME ASSESSMENTS.

5074
03:02:34,640 --> 03:02:35,680
AGAIN, THIS IS REALLY THINKING

5075
03:02:35,680 --> 03:02:38,120
ABOUT HOW DO WE MAKE OUR TRIALS

5076
03:02:38,120 --> 03:02:40,480
MORE ACCESSIBLE AND POTENTIALLY

5077
03:02:40,480 --> 03:02:41,480
DECENTRALIZED.

5078
03:02:41,480 --> 03:02:43,520
CERTAINLY NATURAL HISTORY

5079
03:02:43,520 --> 03:02:44,480
STUDIES, IMPROVING OUR

5080
03:02:44,480 --> 03:02:45,640
UNDERSTANDING OF THESE DISEASES

5081
03:02:45,640 --> 03:02:48,880
LOOKING FOR BIOMARKERS,

5082
03:02:48,880 --> 03:02:51,920
POTENTIALLY EVEN HAVING THESE

5083
03:02:51,920 --> 03:02:53,280
STUDIES SERVE AS EXTERNAL

5084
03:02:53,280 --> 03:02:54,560
CONTROLS IN APPROPRIATE

5085
03:02:54,560 --> 03:02:55,120
SITUATIONS.

5086
03:02:55,120 --> 03:03:05,560
LOOKING AT DEVICES FROM OUR

5087
03:03:06,360 --> 03:03:09,280
DEVICE -- WE ISSUED THREE GRANTS

5088
03:03:09,280 --> 03:03:10,040
AND TWO CONTRACTS THAT ALIGN

5089
03:03:10,040 --> 03:03:12,800
WITH THE GOALS OF THE PROGRAM.

5090
03:03:12,800 --> 03:03:15,680
WE WANT TO THANK NIH AND IN

5091
03:03:15,680 --> 03:03:18,640
PARTICULAR NIAMS FOR

5092
03:03:18,640 --> 03:03:21,600
CONTRIBUTING TO THE A.L.S.

5093
03:03:21,600 --> 03:03:23,680
NATURAL HISTORY GRANT AND THE

5094
03:03:23,680 --> 03:03:25,120
REMOTE USE EQUIVALENCY STUDY.

5095
03:03:25,120 --> 03:03:26,320
I THINK MOST PEOPLE ARE AWARE

5096
03:03:26,320 --> 03:03:28,440
THAT THE A.L.S. FRS IS THE

5097
03:03:28,440 --> 03:03:29,520
CLINICAL OUTCOME ASSESSMENT

5098
03:03:29,520 --> 03:03:30,560
MEASURE THAT'S USED IN OUR

5099
03:03:30,560 --> 03:03:33,480
CLINICAL TRIALS.

5100
03:03:33,480 --> 03:03:36,160
IN ADDITION, AGAIN, TAKING INTO

5101
03:03:36,160 --> 03:03:37,000
CONGRESS' ASK THAT WE ALSO LOOK

5102
03:03:37,000 --> 03:03:38,960
AT OTHER RARE NEURODEGENERATIVE

5103
03:03:38,960 --> 03:03:41,840
DISEASE, WE FUNDED A MYOTONIC

5104
03:03:41,840 --> 03:03:44,280
DYSTROPHY TYPE 1 NATURAL HISTORY

5105
03:03:44,280 --> 03:03:48,640
AND ATAXIA TELANGIECTASIA.

5106
03:03:48,640 --> 03:03:50,400
ALSO OUR COLLEAGUES IN THE

5107
03:03:50,400 --> 03:03:52,200
DEVICE CENTER ARE, AGAIN,

5108
03:03:52,200 --> 03:03:54,240
STARTING THEIR WORK IN THE

5109
03:03:54,240 --> 03:03:56,120
LANDSCAPE ANALYSIS OF BRAIN

5110
03:03:56,120 --> 03:03:57,440
COMPUTER INTERFACE FOCUSED

5111
03:03:57,440 --> 03:03:58,400
PATIENT PREFERENCE STUDIES IN

5112
03:03:58,400 --> 03:03:59,680
A.L.S.

5113
03:03:59,680 --> 03:04:02,720
AFTER FUNDING THESE, WE OPENED A

5114
03:04:02,720 --> 03:04:04,400
DOCKET TO ASK OUR STAKEHOLDERS

5115
03:04:04,400 --> 03:04:08,560
FOR FUNDING CONCEPTS FOR FY 23.

5116
03:04:08,560 --> 03:04:11,760
WE ALSO PUBLISHED AN RFI FOR A

5117
03:04:11,760 --> 03:04:15,240
POSSIBLE CONTRACT IN FY 23 TO

5118
03:04:15,240 --> 03:04:19,520
CONDUCT A BRAIN CENTERS COMPUTER

5119
03:04:19,520 --> 03:04:20,840
INTERFACE LANDSCAPE ANALYSIS FOR

5120
03:04:20,840 --> 03:04:23,520
CLINICAL OUT COME ASSESSMENTS.

5121
03:04:23,520 --> 03:04:26,600
FOR OUR PLANS FOR THIS YEAR,

5122
03:04:26,600 --> 03:04:27,800
THROUGH THE DOCKET.

5123
03:04:27,800 --> 03:04:34,800
SOMDOCKET, SOME OF THEINPUT WE D

5124
03:04:34,800 --> 03:04:36,720
PATHOPHYSIOLOGY AND ADVANCED

5125
03:04:36,720 --> 03:04:37,920
BIOMARKER DEVELOPMENT.

5126
03:04:37,920 --> 03:04:39,320
THERE WAS SOME COMMENTS ABOUT

5127
03:04:39,320 --> 03:04:39,960
SUPPORTING CLINICAL TRIALS BUT

5128
03:04:39,960 --> 03:04:41,200
THE FUNDING FOR THIS GRANT

5129
03:04:41,200 --> 03:04:43,040
PROGRAM, WE DON'T ANTICIPATE TO

5130
03:04:43,040 --> 03:04:44,120
BE ABOVE A COUPLE MILLION, WHICH

5131
03:04:44,120 --> 03:04:48,800
DOES MAKE IT DIFFICULT TO DO ANY

5132
03:04:48,800 --> 03:04:49,600
LARGE CLINICAL TRIALS.

5133
03:04:49,600 --> 03:04:52,160
SO WE WILL BE ISSUING ANOTHER

5134
03:04:52,160 --> 03:04:53,600
RFA ON NATURAL HISTORY AND

5135
03:04:53,600 --> 03:04:55,800
BIOMARKER STUDIES, AS WELL AS

5136
03:04:55,800 --> 03:04:57,320
FOLLOWING UP ON OUR WORK ON THE

5137
03:04:57,320 --> 03:05:02,040
BRAIN COMPUTER INTERFACES AND

5138
03:05:02,040 --> 03:05:06,080
CONTINUING SUPPORT FOR THE

5139
03:05:06,080 --> 03:05:09,640
MYOTONIC DYSTROPHY STUDY.

5140
03:05:09,640 --> 03:05:18,360
WE'VE ALSO BEEN ASKED BY

5141
03:05:18,360 --> 03:05:19,760
DR. WALK FOR SOME ADDITIONAL

5142
03:05:19,760 --> 03:05:21,800
FUNDING TO EXPAND THAT STUDY.

5143
03:05:21,800 --> 03:05:23,000
AGAIN WE'LL BE LOOKING AT THAT

5144
03:05:23,000 --> 03:05:27,040
PROPOSAL AS WELL AS OUR FUNDING.

5145
03:05:27,040 --> 03:05:28,840
THE OTHER THING WE WERE ASKED TO

5146
03:05:28,840 --> 03:05:30,600
DO UNDER THE ACT WAS TO PUBLISH

5147
03:05:30,600 --> 03:05:33,000
AN ACTION PLAN FOR RARE

5148
03:05:33,000 --> 03:05:35,240
NEURODEGENERATIVE DISEASES

5149
03:05:35,240 --> 03:05:35,600
INCLUDING A.L.S.

5150
03:05:35,600 --> 03:05:37,240
THIS HAPPENED SIX MONTHS INTO

5151
03:05:37,240 --> 03:05:37,680
THE PROGRAM.

5152
03:05:37,680 --> 03:05:38,880
WE POSTED THIS ON OUR WEBSITE.

5153
03:05:38,880 --> 03:05:41,960
IT'S A FIVE-YEAR ACTION PLAN.

5154
03:05:41,960 --> 03:05:44,280
IT TALKS ABOUT ADDRESSING --

5155
03:05:44,280 --> 03:05:47,080
WHAT WE'LL DO TO ADDRESS THE

5156
03:05:47,080 --> 03:05:47,520
UNMET MEDICAL NEEDS.

5157
03:05:47,520 --> 03:05:49,240
AS OUR FIRST PART OF THIS, WE

5158
03:05:49,240 --> 03:05:50,560
ISSUED AN A.L.S. SCIENCE

5159
03:05:50,560 --> 03:05:51,880
STRATEGY, AGAIN RECOGNIZING THAT

5160
03:05:51,880 --> 03:05:55,640
THIS ACT WAS DRIVEN IN LARGE

5161
03:05:55,640 --> 03:06:00,800
PART TO ADDRESS A.L.S. AND DRUG

5162
03:06:00,800 --> 03:06:02,040
DEVELOPMENT, SO WE DEVELOPED A

5163
03:06:02,040 --> 03:06:03,680
DISEASE-SPECIFIC APPROACH AND

5164
03:06:03,680 --> 03:06:05,120
ALSO REITERATED THAT, OF COURSE,

5165
03:06:05,120 --> 03:06:08,400
IT'S A MULTIPRONGED APPROACH,

5166
03:06:08,400 --> 03:06:09,360
FDA WORKING BOTH INTERNALLY AS

5167
03:06:09,360 --> 03:06:10,960
WELL AS EXTERNALLY WITH OUR

5168
03:06:10,960 --> 03:06:12,160
STAKEHOLDERS THROUGH RESEARCH

5169
03:06:12,160 --> 03:06:14,000
AND WITH OUR OTHER GOVERNMENT

5170
03:06:14,000 --> 03:06:17,720
AGENCIES.

5171
03:06:17,720 --> 03:06:18,840
THIS IS JUST SOME OF THE

5172
03:06:18,840 --> 03:06:20,040
ACTIVITIES WE PROMISED TO DO,

5173
03:06:20,040 --> 03:06:23,160
SOME OF WHICH WE'VE ALREADY

5174
03:06:23,160 --> 03:06:27,400
ENACTED, ONE WAS TO ESTABLISH AN

5175
03:06:27,400 --> 03:06:29,400
FDA RARE NEURODEGENERATIVE

5176
03:06:29,400 --> 03:06:31,440
DISEASES TASK FORCE.

5177
03:06:31,440 --> 03:06:34,200
I'LL TALK A LITTLE ABOUT HOW

5178
03:06:34,200 --> 03:06:35,760
WE'VE DONE THAT.

5179
03:06:35,760 --> 03:06:36,840
BUT ALSO TO LEVERAGE SOME OF THE

5180
03:06:36,840 --> 03:06:38,160
OTHER INITIATIVES THAT WE HAVE

5181
03:06:38,160 --> 03:06:40,840
INCLUDING OUR ACCELERATING RARE

5182
03:06:40,840 --> 03:06:42,280
DISEASE CURES PROGRAM THAT WE'VE

5183
03:06:42,280 --> 03:06:44,240
LAUNCHED WITHIN THE PAST YEAR.

5184
03:06:44,240 --> 03:06:47,480
TO ESTABLISH PUBLIC-PRIVATE

5185
03:06:47,480 --> 03:06:49,120
PARTNERSHIP FOR RARE

5186
03:06:49,120 --> 03:06:49,960
NEURODEGENERATIVE DISEASES WITH

5187
03:06:49,960 --> 03:06:51,320
NIH, I'LL TALK A LITTLE ABOUT

5188
03:06:51,320 --> 03:06:52,320
WHAT WE'VE DONE THERE TO

5189
03:06:52,320 --> 03:06:56,160
FACILITATE AND SUPPORT RESEARCH

5190
03:06:56,160 --> 03:06:59,360
AND INNOVATION, IN DRUG

5191
03:06:59,360 --> 03:07:00,440
DEVELOPMENT TOOLS AMONG OTHER

5192
03:07:00,440 --> 03:07:02,320
ACTIVITIES AND TO FOSTER

5193
03:07:02,320 --> 03:07:04,200
EXTERNAL ENGAGEMENT WITH A RARE

5194
03:07:04,200 --> 03:07:05,400
NEURODEGENERATIVE DISEASE.

5195
03:07:05,400 --> 03:07:08,720
AND FINALLY, DEVELOP

5196
03:07:08,720 --> 03:07:10,800
DISEASE-SPECIFIC SCIENCE

5197
03:07:10,800 --> 03:07:11,880
STRATEGIES, DECIDED TO FOCUS ON

5198
03:07:11,880 --> 03:07:13,240
THE A.L.S. SCIENCE STRATEGY AND

5199
03:07:13,240 --> 03:07:14,440
WE'LL DEVELOP MORE AS WE SEE THE

5200
03:07:14,440 --> 03:07:15,880
NEED AND RESOURCES ARE

5201
03:07:15,880 --> 03:07:18,840
AVAILABLE.

5202
03:07:18,840 --> 03:07:20,280
SO A LITTLE BIT ON THE SCIENCE

5203
03:07:20,280 --> 03:07:21,240
STRATEGY.

5204
03:07:21,240 --> 03:07:22,440
WE HAVE HAD A NUMBER OF

5205
03:07:22,440 --> 03:07:23,480
ACTIVITIES IN THE PAST YEAR TO

5206
03:07:23,480 --> 03:07:25,440
SUPPORT DRUG DEVELOPMENT FOR

5207
03:07:25,440 --> 03:07:30,960
AMYOTROPHIDEVELOPMDEVELOPMENT FE

5208
03:07:30,960 --> 03:07:33,640
BACK IN 2019 FOR DRUG

5209
03:07:33,640 --> 03:07:34,280
DEVELOPMENT, SOME WORKSHOPS WE

5210
03:07:34,280 --> 03:07:36,960
DID IN 2020 IN COOPERATION WITH

5211
03:07:36,960 --> 03:07:39,600
DUKE MARGOLIS TO HIGHLIGHT

5212
03:07:39,600 --> 03:07:41,240
PROGRESS AND LOOK FOR HOW WE

5213
03:07:41,240 --> 03:07:44,440
ADVANCE THESE PRODUCTS.

5214
03:07:44,440 --> 03:07:45,960
A 2021 GUIDANCE BY THE CENTER

5215
03:07:45,960 --> 03:07:48,240
FOR BIOLOGICS ON GENE THERAPY

5216
03:07:48,240 --> 03:07:49,360
FOR NEURODEGENERATIVE DISEASES,

5217
03:07:49,360 --> 03:07:51,600
AND OF COURSE WE CONTINUE TO

5218
03:07:51,600 --> 03:07:54,400
WORK WITH A.L.S. CAREGIVERS,

5219
03:07:54,400 --> 03:07:54,840
RESEARCHERS AND DRUG

5220
03:07:54,840 --> 03:07:56,280
DEVELOPMENT.

5221
03:07:56,280 --> 03:07:57,880
THE SCIENCE STRATEGY REALLY

5222
03:07:57,880 --> 03:08:00,760
BUILDS ON THE CURRENT SCIENCE

5223
03:08:00,760 --> 03:08:02,160
AND RESEARCH TO SUPPORT DRUG

5224
03:08:02,160 --> 03:08:03,400
DEVELOPMENT AND TO INFORM THAT,

5225
03:08:03,400 --> 03:08:05,720
WE REALLY LOOKED AT OUR

5226
03:08:05,720 --> 03:08:07,760
PORTFOLIOS AND LOOKED AT WHERE

5227
03:08:07,760 --> 03:08:09,800
WE HAD UNMET MEDICAL NEED, WHERE

5228
03:08:09,800 --> 03:08:11,200
THERE WERE CHALLENGES IN DRUG

5229
03:08:11,200 --> 03:08:12,760
DEVELOPMENT AND WHAT WE COULD

5230
03:08:12,760 --> 03:08:13,000
DO.

5231
03:08:13,000 --> 03:08:14,440
AND I THINK THERE'S REALLY THREE

5232
03:08:14,440 --> 03:08:16,320
AREAS OF FOCUS, I'LL DO A LITTLE

5233
03:08:16,320 --> 03:08:19,200
BIT OF A DEEPER DIVE, TO IMPROVE

5234
03:08:19,200 --> 03:08:20,200
CHARACTERIZATION OF THE

5235
03:08:20,200 --> 03:08:20,960
PATHOGENESIS AND NATURAL

5236
03:08:20,960 --> 03:08:21,400
HISTORY.

5237
03:08:21,400 --> 03:08:24,680
I THINK WE ALL AGREE THAT THAT'S

5238
03:08:24,680 --> 03:08:26,520
AN IMPORTANT STEP TO FACILITATE

5239
03:08:26,520 --> 03:08:27,880
ACCESS TO INVESTIGATIONAL NEW

5240
03:08:27,880 --> 03:08:34,320
DRUGS, AND TO ENHANCE CLINICAL

5241
03:08:34,320 --> 03:08:35,360
TRIALS, AGILITY, INFRASTRUCTURE.

5242
03:08:35,360 --> 03:08:36,800
SO THIS IS MORE OF A SCHEMATIC

5243
03:08:36,800 --> 03:08:40,480
OF HOW WE LAID OUT, OBVIOUSLY,

5244
03:08:40,480 --> 03:08:42,000
SOME OF THE EARLY AREAS AS TO

5245
03:08:42,000 --> 03:08:44,120
THE FDA RARE NEURODEGENERATIVE

5246
03:08:44,120 --> 03:08:45,320
TASK FORCE AND TO FOCUS SOME OF

5247
03:08:45,320 --> 03:08:47,200
THAT WORK ON A.L.S.

5248
03:08:47,200 --> 03:08:50,320
TO SUPPORT TRANSLATIONAL SCIENCE

5249
03:08:50,320 --> 03:08:51,480
RESEARCH, AND IN MANY CASES THAT

5250
03:08:51,480 --> 03:08:52,920
MEANS MAKING SURE WE'RE DOING

5251
03:08:52,920 --> 03:08:54,240
APPROPRIATE OUTREACH TO THOSE

5252
03:08:54,240 --> 03:08:56,120
THAT ARE DEVELOPING DRUGS,

5253
03:08:56,120 --> 03:08:57,680
ESPECIALLY THOSE PERHAPS IN

5254
03:08:57,680 --> 03:08:58,760
ACADEMICS WHO MAY NOT BE AS

5255
03:08:58,760 --> 03:09:02,520
FAMILIAR WITH THE REGULATORY

5256
03:09:02,520 --> 03:09:03,160
REQUIREMENTS, THAT THEY

5257
03:09:03,160 --> 03:09:04,400
UNDERSTAND THE PATHWAY TO

5258
03:09:04,400 --> 03:09:06,120
TRANSLATE THEIR SCIENCE INTO

5259
03:09:06,120 --> 03:09:08,800
DRUG DEVELOPMENT.

5260
03:09:08,800 --> 03:09:09,640
AGAIN, AS I SAID, A FOCUS ON

5261
03:09:09,640 --> 03:09:11,160
AMYOTROPHIC LATERAL SCLEROSIS

5262
03:09:11,160 --> 03:09:12,320
NATURAL HISTORY, COLLECTING

5263
03:09:12,320 --> 03:09:14,680
PATIENT PERSPECTIVES ON CLINICAL

5264
03:09:14,680 --> 03:09:15,560
TRIAL PARTICIPATION, HOWL WE CAN

5265
03:09:15,560 --> 03:09:21,360
MAKE THOHOW WE CANMAKE THOSE MOD

5266
03:09:21,360 --> 03:09:21,840
EASIER FOR PATIENTS TO

5267
03:09:21,840 --> 03:09:22,360
PARTICIPATE IN.

5268
03:09:22,360 --> 03:09:23,560
WE WANT TO ENCOURAGE DATA

5269
03:09:23,560 --> 03:09:26,440
SHARING AND IN PARTICULAR

5270
03:09:26,440 --> 03:09:27,880
DEVELOP STUDY DATA STANDARDS FOR

5271
03:09:27,880 --> 03:09:30,960
AMYOTROPHIC LATERAL SCLEROSIS.

5272
03:09:30,960 --> 03:09:32,600
THE CELL AND GENE THERAPIES

5273
03:09:32,600 --> 03:09:33,800
SAFETY PROJECT IS ONE WHERE

5274
03:09:33,800 --> 03:09:35,480
THEY'RE LOOKING ACROSS BOTH

5275
03:09:35,480 --> 03:09:37,040
A.L.S. AND OTHER

5276
03:09:37,040 --> 03:09:38,000
NEURODEGENERATIVE DISEASES FOR

5277
03:09:38,000 --> 03:09:39,200
GENE THERAPY TO LOOK FOR COMMON

5278
03:09:39,200 --> 03:09:43,000
SAFETY ISSUES.

5279
03:09:43,000 --> 03:09:45,280
EXPLORING THE USE OF

5280
03:09:45,280 --> 03:09:46,480
FIT-FOR-PURPOSE DIGITAL HEALTH

5281
03:09:46,480 --> 03:09:47,360
TECHNOLOGIES, AND ENCOURAGING

5282
03:09:47,360 --> 03:09:48,800
THE INCORPORATION OF EXPANDED

5283
03:09:48,800 --> 03:09:50,920
ACCESS INTO CLINICAL

5284
03:09:50,920 --> 03:09:52,200
DEVELOPMENT, ALSO PROMOTING

5285
03:09:52,200 --> 03:09:55,240
SUCCESSFUL TRANSITION -- AND THE

5286
03:09:55,240 --> 03:09:56,840
FUNDING FROM NIH WILL HELP THOSE

5287
03:09:56,840 --> 03:09:59,480
CONVERSATIONS, ESPECIALLY FOR

5288
03:09:59,480 --> 03:10:02,280
THE SMALL BUSINESSES AND JUST

5289
03:10:02,280 --> 03:10:03,480
PROMOTING SUCCESSFUL BENCH TO

5290
03:10:03,480 --> 03:10:03,920
BEDSIDE.

5291
03:10:03,920 --> 03:10:05,680
IF WE'RE SUCCESSFUL IN SOME OF

5292
03:10:05,680 --> 03:10:08,000
THESE ISSUES, WE HOPE TO START

5293
03:10:08,000 --> 03:10:10,960
TO CONTINUE TO INNOVATE CLINICAL

5294
03:10:10,960 --> 03:10:13,080
TRIAL DESIGNS AND ENHANCE

5295
03:10:13,080 --> 03:10:15,280
CLINICAL TRIAL INFRASTRUCTURE

5296
03:10:15,280 --> 03:10:21,520
AND AGILITY.

5297
03:10:21,520 --> 03:10:22,400
OUR CENTER FOR DEVICES, OF

5298
03:10:22,400 --> 03:10:23,600
COURSE WE HAVE A NUMBER OF

5299
03:10:23,600 --> 03:10:25,280
DEVICES THAT HELP PATIENTS LIVE

5300
03:10:25,280 --> 03:10:26,720
WITH A.L.S. BUT REALLY THEY WANT

5301
03:10:26,720 --> 03:10:28,360
TO FOCUS ON THE NEXT BRAIN

5302
03:10:28,360 --> 03:10:30,120
COMPUTER INTERFACES TO ENABLE

5303
03:10:30,120 --> 03:10:31,280
COMMUNICATION WHEN THAT IS NO

5304
03:10:31,280 --> 03:10:31,920
LONGER POSSIBLE.

5305
03:10:31,920 --> 03:10:34,040
AS WELL AS DIAGNOSTICS, WE THINK

5306
03:10:34,040 --> 03:10:39,520
OF MRIs, BUT HOW CAN WE MOVE

5307
03:10:39,520 --> 03:10:41,280
FORWARD WITH IN VITRO

5308
03:10:41,280 --> 03:10:42,720
DIAGNOSTICS TO PROVIDE EARLIER

5309
03:10:42,720 --> 03:10:44,360
DIAGNOSIS, ENABLING EARLIER

5310
03:10:44,360 --> 03:10:46,040
TREATMENT TO DETECT BIOMARKERS

5311
03:10:46,040 --> 03:10:47,360
THAT MAKE A PATIENT LIKELY TO

5312
03:10:47,360 --> 03:10:48,680
RESPOND TO A SPECIFIC TREATMENT,

5313
03:10:48,680 --> 03:10:51,560
WHICH REALLY STREAMLINES DRUG

5314
03:10:51,560 --> 03:10:52,840
DEVELOPMENT AND TO MONITOR

5315
03:10:52,840 --> 03:10:53,760
DISEASE PROGRESSION TO HELP

5316
03:10:53,760 --> 03:10:54,960
GUIDE TREATMENT.

5317
03:10:54,960 --> 03:10:58,160
SO DIGITAL HEALTH S IS ANOTHER

5318
03:10:58,160 --> 03:10:59,880
PRIORITY AND I THINK IT'S

5319
03:10:59,880 --> 03:11:01,960
SELF-EVIDENT THAT REMOTE DATA

5320
03:11:01,960 --> 03:11:04,800
COLLECTION CAN REALLY HELP US TO

5321
03:11:04,800 --> 03:11:05,320
DECENTRALIZE CLINICAL

5322
03:11:05,320 --> 03:11:06,400
INVESTIGATIONS AND IMPROVE

5323
03:11:06,400 --> 03:11:07,160
ACCESS TO CLINICAL

5324
03:11:07,160 --> 03:11:08,320
INVESTIGATIONS BY BRINGING MORE

5325
03:11:08,320 --> 03:11:09,760
OF THE CLINICAL TRIAL TO WHERE

5326
03:11:09,760 --> 03:11:11,840
THE PATIENT IS AND POTENTIALLY

5327
03:11:11,840 --> 03:11:16,720
FEWER VISITS TO STUDY SITES.

5328
03:11:16,720 --> 03:11:20,520
IT MAY ALSO FACILITATE

5329
03:11:20,520 --> 03:11:21,080
INNOVATIVE CLINICAL

5330
03:11:21,080 --> 03:11:22,840
INVESTIGATION END POINTS GOING

5331
03:11:22,840 --> 03:11:24,360
BEYOND THE ONES WE HAVE TODAY,

5332
03:11:24,360 --> 03:11:26,280
AND THEN FACILITATING CAPTURING

5333
03:11:26,280 --> 03:11:27,800
REAL WORLD DATA AND PATIENT

5334
03:11:27,800 --> 03:11:29,640
GENERATED HEALTH DATA SO WE CAN

5335
03:11:29,640 --> 03:11:30,640
REALLY UNDERSTAND A

5336
03:11:30,640 --> 03:11:31,960
PARTICIPANT'S DAILY LIFE AND

5337
03:11:31,960 --> 03:11:34,680
LONGITUDINAL FOLLOW-UP AND A

5338
03:11:34,680 --> 03:11:36,400
MORE DETAILED PICTURE OF THE

5339
03:11:36,400 --> 03:11:39,120
IMPACT OF THE MEDICAL CONDITION

5340
03:11:39,120 --> 03:11:40,400
ON A PATIENT.

5341
03:11:40,400 --> 03:11:44,760
AS I SAID, WE FORMED A TASK

5342
03:11:44,760 --> 03:11:46,680
FORCE FOR NEURODEGENERATIVE

5343
03:11:46,680 --> 03:11:49,520
DISEASE FOR REPRESENTATION FROM

5344
03:11:49,520 --> 03:11:50,720
OUR CENTERS FOR DRUGS,

5345
03:11:50,720 --> 03:11:52,280
BIOLOGICS, DEVICES AND THE

5346
03:11:52,280 --> 03:11:52,840
OFFICE OF THE COMMISSIONER.

5347
03:11:52,840 --> 03:11:54,080
WE WANT TO COORDINATE INPUT FOR

5348
03:11:54,080 --> 03:11:55,960
THE PUBLIC-PRIVATE PARTNERSHIP

5349
03:11:55,960 --> 03:11:58,400
AND OTHER ACTIVITIES RELATED TO

5350
03:11:58,400 --> 03:11:59,520
THE IMPLEMENTATION OF THE ACT

5351
03:11:59,520 --> 03:12:01,480
FOR A.L.S., INCLUDING REGULATORY

5352
03:12:01,480 --> 03:12:02,600
SCIENCE PRIORITIES AND TO ENSURE

5353
03:12:02,600 --> 03:12:05,160
THAT WE HAVE A COHESIVE FDA

5354
03:12:05,160 --> 03:12:07,640
APPROACH TO AND COORDINATED

5355
03:12:07,640 --> 03:12:09,480
EFFORTS TOWARDS ADVANCING

5356
03:12:09,480 --> 03:12:11,320
SCIENCE AND DRUG DEVELOPMENT FOR

5357
03:12:11,320 --> 03:12:12,320
RARE NEURODEGENERATIVE DISEASES

5358
03:12:12,320 --> 03:12:14,840
SO WE'RE COORDINATED ON

5359
03:12:14,840 --> 03:12:15,480
CROSS-CUTTING CLINICAL AND

5360
03:12:15,480 --> 03:12:16,560
REGULATORY POLICY ISSUES TO

5361
03:12:16,560 --> 03:12:17,480
FOSTER CONSISTENCY, SOMETHING

5362
03:12:17,480 --> 03:12:20,880
THAT'S REALLY ALWAYS ASKED OF US

5363
03:12:20,880 --> 03:12:22,320
AS WE MOVE FORWARD.

5364
03:12:22,320 --> 03:12:23,720
WE ALSO WANT TO MAKE SURE WE

5365
03:12:23,720 --> 03:12:26,280
LEVERAGE SOME OF OUR OTHER

5366
03:12:26,280 --> 03:12:27,600
PROGRAMS TO MAKE THINGS

5367
03:12:27,600 --> 03:12:28,600
SYNERGISTIC RATHER THAN SILOED.

5368
03:12:28,600 --> 03:12:30,360
SOME OF YOU MAY OR MAY NOT BE

5369
03:12:30,360 --> 03:12:32,920
AWARE IN 2022, WE LAUNCHED THE

5370
03:12:32,920 --> 03:12:34,880
ACCELERATING RARE DISEASE CURES

5371
03:12:34,880 --> 03:12:37,360
PROGRAM IN CDER TO DRIVE

5372
03:12:37,360 --> 03:12:39,440
SCIENTIFIC AND REGULATORY

5373
03:12:39,440 --> 03:12:42,400
INNOVATION AND HE GAUGEMENT.

5374
03:12:42,400 --> 03:12:46,480
MANY OF YOU MAY KNOW THAT WE

5375
03:12:46,480 --> 03:12:47,960
HAVE HAD AN INCREASE IN DRUG

5376
03:12:47,960 --> 03:12:51,000
DEVELOPMENT FOR RARE DISEASES,

5377
03:12:51,000 --> 03:12:52,880
IN SOME YEARS CLOSE TO 50% OF

5378
03:12:52,880 --> 03:12:54,480
OUR NEW MOLECULAR ENTITIES ARE

5379
03:12:54,480 --> 03:12:55,720
FOR A RARE DISEASE BUT THERE'S

5380
03:12:55,720 --> 03:12:57,000
MUCH MORE TO BE DONE.

5381
03:12:57,000 --> 03:13:00,320
AGAIN, THIS IS THE CENTER FOR

5382
03:13:00,320 --> 03:13:02,440
DRUG PROGRAM, OFFICE OF THE

5383
03:13:02,440 --> 03:13:04,160
CENTER DIRECTOR, OFFICE OF

5384
03:13:04,160 --> 03:13:05,360
TRANSLATIONAL SCIENCE, OFFICE OF

5385
03:13:05,360 --> 03:13:06,040
NEW DRUGS.

5386
03:13:06,040 --> 03:13:07,560
OUR VISION IS THAT IT REALLY

5387
03:13:07,560 --> 03:13:09,120
WILL BE ACROSS FDA WITH INPUT

5388
03:13:09,120 --> 03:13:12,560
FROM OUR OTHER CENTERS AND OTHER

5389
03:13:12,560 --> 03:13:13,000
OFFICES.

5390
03:13:13,000 --> 03:13:15,280
SOME OF THE THINGS IT'S REALLY

5391
03:13:15,280 --> 03:13:16,800
FOCUSED TWO WAY, ONE, OUTREACH

5392
03:13:16,800 --> 03:13:18,200
AND EDUCATION, ONE OF THE THINGS

5393
03:13:18,200 --> 03:13:21,880
THAT WE WILL BE WORKING ON IS

5394
03:13:21,880 --> 03:13:26,440
LEARNING IN AND EDUCATION TO

5395
03:13:26,440 --> 03:13:27,280
ADVANCE AND EMPOWER RARE

5396
03:13:27,280 --> 03:13:29,160
DECEMBER DRUG DEVELOPERS, MAKING

5397
03:13:29,160 --> 03:13:30,280
SURE THAT THOSE WHO ARE

5398
03:13:30,280 --> 03:13:31,640
TRANSLATING THEIR RESEARCH INTO

5399
03:13:31,640 --> 03:13:32,400
CLINICAL TRIALS REALLY

5400
03:13:32,400 --> 03:13:35,720
UNDERSTAND HOW TO MAKE THAT

5401
03:13:35,720 --> 03:13:37,000
TRANSITION INTO GETTING A

5402
03:13:37,000 --> 03:13:38,920
PRODUCT LICENSED.

5403
03:13:38,920 --> 03:13:40,360
SO YOU KNOW, WE'RE SEEKING INPUT

5404
03:13:40,360 --> 03:13:41,720
FROM KEY STAKEHOLDERS IN TERMS

5405
03:13:41,720 --> 03:13:43,800
OF WHAT THEY UNDERSTAND AND

5406
03:13:43,800 --> 03:13:44,800
DON'T UNDERSTAND ABOUT THE DRUG

5407
03:13:44,800 --> 03:13:47,520
DEVELOPMENT PROCESS FROM AN FDA

5408
03:13:47,520 --> 03:13:47,960
PERSPECTIVE.

5409
03:13:47,960 --> 03:13:50,440
WE'VE BEGUN OUTREACH TO OUR U.S.

5410
03:13:50,440 --> 03:13:51,760
GOVERNMENT STAKEHOLDERS AND

5411
03:13:51,760 --> 03:13:53,640
WE'VE OPENED A DOCKET FOR PUBLIC

5412
03:13:53,640 --> 03:13:54,520
COMMENTS TO INFORM THIS

5413
03:13:54,520 --> 03:13:55,560
ACTIVITY.

5414
03:13:55,560 --> 03:13:58,040
OF COURSE YOU KNOW, ACTIVITIES

5415
03:13:58,040 --> 03:14:00,120
SUCH AS A RARE DISEASE, WE'LL BE

5416
03:14:00,120 --> 03:14:02,320
PRESENTING ON SOME OF THE

5417
03:14:02,320 --> 03:14:03,960
CHALLENGES OF CLINICAL TRIALS

5418
03:14:03,960 --> 03:14:07,200
WITH SMALL POPULATIONS,

5419
03:14:07,200 --> 03:14:08,320
IMPORTANT CONSIDERATIONS, AS

5420
03:14:08,320 --> 03:14:10,360
WELL AS PRESENTING ON THE ARC

5421
03:14:10,360 --> 03:14:11,760
PROGRAM, AND THE PROGRAM WAS

5422
03:14:11,760 --> 03:14:13,960
FEATURED IN A DECEMBER ARTICLE

5423
03:14:13,960 --> 03:14:15,400
IN END POINT NEWS, IF ANYONE

5424
03:14:15,400 --> 03:14:16,240
WANTS MORE INFORMATION.

5425
03:14:16,240 --> 03:14:18,080
THERE'S ALSO A LOT OF INTERNAL

5426
03:14:18,080 --> 03:14:20,240
ACTIVITIES, AGAIN, CREATING AN

5427
03:14:20,240 --> 03:14:21,880
INTERNAL KNOWLEDGE RESOURCES TO

5428
03:14:21,880 --> 03:14:23,160
UNDERSTAND INNOVATIVE

5429
03:14:23,160 --> 03:14:24,680
APPROACHES, AND MAKE SURE WE'RE

5430
03:14:24,680 --> 03:14:26,760
LEVERAGING EXPERTISE ACROSS

5431
03:14:26,760 --> 03:14:28,360
DIVISIONS JUST LIKE NIH, WE HAVE

5432
03:14:28,360 --> 03:14:30,280
A LOT OF DIFFERENT DIVISIONS AND

5433
03:14:30,280 --> 03:14:30,680
OFFICES.

5434
03:14:30,680 --> 03:14:32,000
WE WANT THOSE WITH THE MOST

5435
03:14:32,000 --> 03:14:33,680
EXPERTISE TO BE ABLE TO CONSULT

5436
03:14:33,680 --> 03:14:37,520
ON EACH APPLICATION AND ENSURE

5437
03:14:37,520 --> 03:14:39,080
CONSISTENCY AND THAT WE'RE BEING

5438
03:14:39,080 --> 03:14:40,600
AS INNOVATIVE AS WE SHOULD BE.

5439
03:14:40,600 --> 03:14:42,240
WE WANT TO CONTINUE INTERNAL

5440
03:14:42,240 --> 03:14:44,080
FORUMS THAT REALLY DISCUSS THE

5441
03:14:44,080 --> 03:14:46,200
CHALLENGING APPLICATIONS AND

5442
03:14:46,200 --> 03:14:49,960
POLICY, AND THEN HAVE A COMMON

5443
03:14:49,960 --> 03:14:51,240
INPUT INTO OUR REGULATORY

5444
03:14:51,240 --> 03:14:52,480
SCIENCE PRIORITIES AND MAKE SURE

5445
03:14:52,480 --> 03:14:55,600
WE'RE GETTING RESULTS FROM THOSE

5446
03:14:55,600 --> 03:14:56,920
INVESTMENTS.

5447
03:14:56,920 --> 03:15:00,280
IN TERMS OF THE PRIVATE-PUBLIC

5448
03:15:00,280 --> 03:15:01,400
PARTNERSHIP -- PUBLIC-PRIVATE

5449
03:15:01,400 --> 03:15:03,320
PARTNERSHIP, AS MANY OF YOU MAY

5450
03:15:03,320 --> 03:15:05,080
KNOW, IN SEPTEMBER, NIH AND FDA

5451
03:15:05,080 --> 03:15:06,640
LAUNCHED THIS PUBLIC-PRIVATE

5452
03:15:06,640 --> 03:15:08,160
PARTNERSHIP FOR RARE

5453
03:15:08,160 --> 03:15:09,520
NEURODEGENERATIVE DISEASES.

5454
03:15:09,520 --> 03:15:13,320
WE SELECTED THE CRITICAL PATH

5455
03:15:13,320 --> 03:15:15,120
INSTITUTE AS THE CONVENER OF THE

5456
03:15:15,120 --> 03:15:15,400
PARTNERSHIP.

5457
03:15:15,400 --> 03:15:17,080
FOR MANY OF YOU, CRITICAL PATH

5458
03:15:17,080 --> 03:15:21,480
HAS WORKED WITH FDA EXTENSIVELY

5459
03:15:21,480 --> 03:15:23,680
ON REGULATORY SCIENCES AND NIH

5460
03:15:23,680 --> 03:15:28,920
IS ALSO PARTICIPATED IN THEIR

5461
03:15:28,920 --> 03:15:31,040
ACTIVITIES.

5462
03:15:31,040 --> 03:15:33,040
THEY HAVE CONCENTRATION AREAS

5463
03:15:33,040 --> 03:15:33,880
FOR THIS PART OF THE

5464
03:15:33,880 --> 03:15:34,520
PUBLIC-PRIVATE PARTNERSHIP WILL

5465
03:15:34,520 --> 03:15:35,760
BE THE NEUROLOGY PROGRAM, THEIR

5466
03:15:35,760 --> 03:15:38,640
PEDIATRIC PROGRAM, AS WELL AS

5467
03:15:38,640 --> 03:15:40,640
THEIR RARE ORPHAN DISEASE

5468
03:15:40,640 --> 03:15:41,480
PROGRAM.

5469
03:15:41,480 --> 03:15:44,720
THEY ALREADY HAVE A CONSORTIA,

5470
03:15:44,720 --> 03:15:50,440
HUNTINGTON'S DISEASE, RS --

5471
03:15:50,440 --> 03:15:53,080
REGULATORY SCIENCES CONSORTIUM.

5472
03:15:53,080 --> 03:15:57,640
THE CPTA IS THE CRITICAL PATH

5473
03:15:57,640 --> 03:15:58,600
THERAPEUTICS FOR ATAXIA.

5474
03:15:58,600 --> 03:16:01,120
THEIR CORE COMPETENCIES ARE IN

5475
03:16:01,120 --> 03:16:03,440
REGULATORY SCIENCE, THE COA

5476
03:16:03,440 --> 03:16:05,640
PROGRAM, THEY WORK ON QUALIFYING

5477
03:16:05,640 --> 03:16:07,400
DIFFERENT PROs AND CLINICAL

5478
03:16:07,400 --> 03:16:09,280
OUTCOME ASSESSMENTS FOR

5479
03:16:09,280 --> 03:16:11,520
REGULATORY USE, AS WELL AS

5480
03:16:11,520 --> 03:16:12,400
BIOMARKERS, THEY'VE BEEN

5481
03:16:12,400 --> 03:16:13,840
INSTRUMENTAL IN DEVELOPING SOME

5482
03:16:13,840 --> 03:16:17,120
BIOMARKERS THAT HAVE QUALIFIED

5483
03:16:17,120 --> 03:16:19,600
FOR UNDER FDA'S BIOMARKER

5484
03:16:19,600 --> 03:16:20,520
QUALIFICATION PROGRAM.

5485
03:16:20,520 --> 03:16:26,720
THEIR QUANTMED PROGRAM IS

5486
03:16:26,720 --> 03:16:28,360
FOCUSED ON MODEL INFORMED DRUG

5487
03:16:28,360 --> 03:16:29,800
DEVELOPMENT AND THEIR DATA

5488
03:16:29,800 --> 03:16:31,080
COLLABORATION, THE DCC, IS

5489
03:16:31,080 --> 03:16:32,800
REALLY FEEDING INTO THE RARE

5490
03:16:32,800 --> 03:16:34,400
DISEASE CURES ACCELERATOR

5491
03:16:34,400 --> 03:16:35,640
ANALYSIS PROGRAM, WHICH IS WHAT

5492
03:16:35,640 --> 03:16:40,040
WE CALL RDCA DAP, SOMETHING THAT

5493
03:16:40,040 --> 03:16:41,640
WAS FORMED WITHIN NIH TO REALLY

5494
03:16:41,640 --> 03:16:42,200
BRING DATA TOGETHER.

5495
03:16:42,200 --> 03:16:45,520
I HAVE A SLIDE ON THAT AND I'LL

5496
03:16:45,520 --> 03:16:47,480
TALK HOW WE REALLY WANT TO

5497
03:16:47,480 --> 03:16:48,600
INTEGRATE A.L.S. DATA INTO THAT

5498
03:16:48,600 --> 03:16:52,600
INITIATIVE.

5499
03:16:52,600 --> 03:16:54,120
SO THIS IS REALLY THE LEARN AND

5500
03:16:54,120 --> 03:16:56,760
CONFIRM, TAKING THE STRENGTHS OF

5501
03:16:56,760 --> 03:16:59,160
BOTH PARTNERS, NIH TRANSLATING

5502
03:16:59,160 --> 03:17:00,760
THE CLINICAL AND PRE-CLINICAL

5503
03:17:00,760 --> 03:17:02,840
DISCOVERY INTO RND AND THEN

5504
03:17:02,840 --> 03:17:04,160
ACCELERATING INNOVATION AND

5505
03:17:04,160 --> 03:17:05,760
REGULATORY SCIENCE FOR DRUG

5506
03:17:05,760 --> 03:17:06,760
DEVELOPMENT.

5507
03:17:06,760 --> 03:17:08,800
THIS IS JUST THE SCHEMATIC OF

5508
03:17:08,800 --> 03:17:13,280
THE RDCA-DAP, DATA COLLABORATION

5509
03:17:13,280 --> 03:17:15,160
CENTER, AND ABLE TO INGEST

5510
03:17:15,160 --> 03:17:18,200
MULTIPLE SOURCES OF DATA, CURATE

5511
03:17:18,200 --> 03:17:24,080
THEM INTO A STANDARDIZED DATA

5512
03:17:24,080 --> 03:17:26,120
STANDARD AND REFORMAT AND CLEAN

5513
03:17:26,120 --> 03:17:28,720
SO YOU HAVE FULLY CURATED AS

5514
03:17:28,720 --> 03:17:30,160
WELL AS MINIMAL LIQUEUR RATED

5515
03:17:30,160 --> 03:17:31,720
THAT CAN BE FED INTO OTHER

5516
03:17:31,720 --> 03:17:33,400
INITIATIVES INCLUDING THE

5517
03:17:33,400 --> 03:17:34,400
QUANTITATIVE MEDICINE PROGRAM AS

5518
03:17:34,400 --> 03:17:35,760
WELL AS TO BE USED BY OTHER

5519
03:17:35,760 --> 03:17:36,040
RESEARCHERS.

5520
03:17:36,040 --> 03:17:37,600
I THINK THE LAST TIME I CHECKED

5521
03:17:37,600 --> 03:17:42,920
IN TERMS OF HOW MUCH DATA THEY

5522
03:17:42,920 --> 03:17:46,800
ACTUALLY HOLD, THEY HAVE ABOUT

5523
03:17:46,800 --> 03:17:48,200
230 DATASETS IN CLINICAL TRIALS,

5524
03:17:48,200 --> 03:17:50,080
SO I THINK THERE'S A LITTLE

5525
03:17:50,080 --> 03:17:51,960
MORE, OBSERVATIONAL STUDIES IN

5526
03:17:51,960 --> 03:17:53,680
REAL WORLD STUDIES.

5527
03:17:53,680 --> 03:17:54,920
A NUMBER OF DIFFERENT

5528
03:17:54,920 --> 03:17:56,000
NEUROLOGICAL DISEASES.

5529
03:17:56,000 --> 03:17:58,400
AS WELL AS -- AND THAT'S

5530
03:17:58,400 --> 03:18:01,760
ABOUT -- OVER ABOUT 175,000

5531
03:18:01,760 --> 03:18:02,560
PATIENT INFORMATION.

5532
03:18:02,560 --> 03:18:04,600
SO WE HOPE TO REALLY MOVE

5533
03:18:04,600 --> 03:18:06,560
FURTHER INTO OTHER RARE

5534
03:18:06,560 --> 03:18:07,560
NEURODEGENERATIVE DISEASES.

5535
03:18:07,560 --> 03:18:09,600
THEY DO HAVE PARKINSON'S AND

5536
03:18:09,600 --> 03:18:11,160
HUNTINGTONS RIGHT NOW, BUT WE'LL

5537
03:18:11,160 --> 03:18:12,800
EXPAND THAT INTO AMYOTROPHIC

5538
03:18:12,800 --> 03:18:16,000
LAA.L.S.SOME OF THE THINGS THATE

5539
03:18:16,000 --> 03:18:17,560
GOING ON, WE ARE WORKING ON A

5540
03:18:17,560 --> 03:18:18,640
STAKEHOLDER MAP UNDER

5541
03:18:18,640 --> 03:18:22,240
DEVELOPMENT, AND ALSO WORKING ON

5542
03:18:22,240 --> 03:18:24,200
A MEETING THAT WILL BE

5543
03:18:24,200 --> 03:18:25,280
SPECIFICALLY, YOU KNOW, OUT TO

5544
03:18:25,280 --> 03:18:26,480
OUR STAKEHOLDERS TO UNDERSTAND

5545
03:18:26,480 --> 03:18:28,440
WHERE THE GAPS ARE FOR A.L.S.

5546
03:18:28,440 --> 03:18:30,840
AND WHAT WE CAN DO IN THE

5547
03:18:30,840 --> 03:18:31,720
REGULATORY SCIENCE SPACE AS WELL

5548
03:18:31,720 --> 03:18:33,920
AS IN INDUSTRY.

5549
03:18:33,920 --> 03:18:37,040
IN THE HUNTINGTON'S, THERE'S

5550
03:18:37,040 --> 03:18:38,360
BEEN SUBMIGS FOR QUANTITATIVE

5551
03:18:38,360 --> 03:18:40,120
CLINICAL TRIAL SIMULATION, IN

5552
03:18:40,120 --> 03:18:47,720
THE ATAXIA, THERE IS CONTINUITY

5553
03:18:47,720 --> 03:18:50,360
FOR COA-FOCUSED EFFORT, DATA

5554
03:18:50,360 --> 03:18:52,600
INTERFACING AND DISEASE STAGING

5555
03:18:52,600 --> 03:18:54,840
DEFINITION BEING WORKED ON, AS

5556
03:18:54,840 --> 03:18:58,960
WELL AS STRATEGY FOR FRIEDRICH'S

5557
03:18:58,960 --> 03:19:00,680
ATAXIA, AND FINALLY THINKING

5558
03:19:00,680 --> 03:19:02,200
ABOUT QUANTITATIVE, SOME A.L.S.

5559
03:19:02,200 --> 03:19:03,520
MODELING INVENTORIES UNDER

5560
03:19:03,520 --> 03:19:05,040
DEVELOPING AND PREPPING A DATA

5561
03:19:05,040 --> 03:19:07,720
STRATEGY FOR A.L.S. TO FEED INTO

5562
03:19:07,720 --> 03:19:10,600
THE RDCA-DAP.

5563
03:19:10,600 --> 03:19:14,400
SO I THINK IN SUMMARY, YOU KNOW,

5564
03:19:14,400 --> 03:19:16,600
THE ACT FOR A.L.S. LAYS OUT A

5565
03:19:16,600 --> 03:19:17,920
MULTIFACETED APPROACH TO

5566
03:19:17,920 --> 03:19:18,800
ADVANCING DRUG DEVELOPMENT FOR

5567
03:19:18,800 --> 03:19:20,600
A.L.S. AND OTHER RARE

5568
03:19:20,600 --> 03:19:21,040
NEUROLOGICAL DISEASES.

5569
03:19:21,040 --> 03:19:22,480
WE'RE ENGAGING ON MULTIPLE

5570
03:19:22,480 --> 03:19:23,800
FRONTS BOTH EXTERNALLY AND

5571
03:19:23,800 --> 03:19:25,240
INTERNALLY, AND WE REALLY LOOK

5572
03:19:25,240 --> 03:19:26,840
FORWARD TO, WOULDING WITH NIH

5573
03:19:26,840 --> 03:19:28,920
AND OUR PUBLIC-PRIVATE

5574
03:19:28,920 --> 03:19:29,480
PARTNERSHIP TO ADVANCE NEW

5575
03:19:29,480 --> 03:19:31,080
THERAPIES THAT WILL ADDRESS

5576
03:19:31,080 --> 03:19:31,880
SIGNIFICANT UNMET NEEDS.

5577
03:19:31,880 --> 03:19:32,960
AND I WANT TO THANK YOU FOR YOUR

5578
03:19:32,960 --> 03:19:41,080
ATTENTION.

5579
03:19:41,080 --> 03:19:46,120
>>THANK YOU FOR THIS
REALLY

5580
03:19:46,120 --> 03:19:47,200
EXCELLENT OVERVIEW.

5581
03:19:47,200 --> 03:19:49,080
UNLESS WE HAVE QUESTIONS FROM

5582
03:19:49,080 --> 03:19:50,280
COUNCIL, I'LL THEN TURN IT OVER

5583
03:19:50,280 --> 03:19:53,960
TO WALTER.

5584
03:19:53,960 --> 03:19:54,920
>>WELL, THANK YOU VERY
MUCH,

5585
03:19:54,920 --> 03:19:56,360
JACQUELINE.

5586
03:19:56,360 --> 03:19:59,640
IT'S REALLY EXCITING TO BE

5587
03:19:59,640 --> 03:20:06,280
WORKING WITH THE FDA AND I THINK

5588
03:20:06,280 --> 03:20:07,560
IT WAS JUST SO COMPLEMENTARY,

5589
03:20:07,560 --> 03:20:09,520
THE FDA WORKING WITH INDUSTRY IN

5590
03:20:09,520 --> 03:20:13,080
TERMS OF GETTING PRODUCTS

5591
03:20:13,080 --> 03:20:13,920
APPROVED, KNOWING THAT THEY

5592
03:20:13,920 --> 03:20:17,160
WORK, GETTING THEM APPROVED.

5593
03:20:17,160 --> 03:20:19,840
NIH GENERALLY IS WAY KIND OF

5594
03:20:19,840 --> 03:20:21,680
BACK WHERE WE'RE DOING THE

5595
03:20:21,680 --> 03:20:23,080
SCIENCE THAT ENABLES THE

5596
03:20:23,080 --> 03:20:25,600
INDUSTRY TO IDENTIFY TARGETS,

5597
03:20:25,600 --> 03:20:27,400
MAYBE VALIDATE THEIR TARGETS,

5598
03:20:27,400 --> 03:20:30,120
THINK ABOUT HOW TO DO PHASE

5599
03:20:30,120 --> 03:20:31,680
2 TRIALS, BUT USUALLY AFTER

5600
03:20:31,680 --> 03:20:35,600
THAT, IT'S KIND OF HANDS OFF AND

5601
03:20:35,600 --> 03:20:37,200
WE HAVE LITTLE INTERACTION WITH

5602
03:20:37,200 --> 03:20:39,680
THEM AS THEY MOVE TOWARDS THE

5603
03:20:39,680 --> 03:20:40,920
REALLY CENTRAL PIECE, WHICH IS

5604
03:20:40,920 --> 03:20:44,440
GETTING THINGS APPROVED IN A

5605
03:20:44,440 --> 03:20:46,080
REGULATORY SCIENCE, AND SO I

5606
03:20:46,080 --> 03:20:47,520
THINK WE'RE GOING TO LEARN A

5607
03:20:47,520 --> 03:20:49,080
LOT, I THINK, FROM WORKING WITH

5608
03:20:49,080 --> 03:20:49,240
YOU.

5609
03:20:49,240 --> 03:20:53,760
WE REALLY LOOK FORWARD TO IT.

5610
03:20:53,760 --> 03:20:57,760
I WANTED TO JUST TALK A LITTLE

5611
03:20:57,760 --> 03:21:02,160
BIT ABOUT THE STRATEGIC PLAN

5612
03:21:02,160 --> 03:21:03,520
AGAIN, SO IF I COULD HAVE MY

5613
03:21:03,520 --> 03:21:05,040
FIRST SLIDE.

5614
03:21:05,040 --> 03:21:07,920
THIS IS JUST A REFERENCE BACK TO

5615
03:21:07,920 --> 03:21:10,880
WHAT WAS PRESENTED BY THE

5616
03:21:10,880 --> 03:21:11,520
WORKING GROUP.

5617
03:21:11,520 --> 03:21:15,040
THESE ARE THE KIND OF MAJOR

5618
03:21:15,040 --> 03:21:16,520
AREAS, UNDERSTANDING THE BIOLOGY

5619
03:21:16,520 --> 03:21:18,760
BEHIND AMYOTROPHIC LATERAL A.L.F

5620
03:21:18,760 --> 03:21:23,960
A STRONGSUIT OF NINDS.

5621
03:21:23,960 --> 03:21:24,760
TRANSLATING THE FUNDAMENTAL

5622
03:21:24,760 --> 03:21:26,720
RESEARCH INTO POTENTIAL A.L.S.

5623
03:21:26,720 --> 03:21:26,960
THERAPIES.

5624
03:21:26,960 --> 03:21:29,800
FOR US, THAT'S USUALLY GETTING

5625
03:21:29,800 --> 03:21:31,480
THINGS TOWARDS THE PHASE TWO

5626
03:21:31,480 --> 03:21:31,880
STAGE.

5627
03:21:31,880 --> 03:21:36,160
BUT USUALLY NOT INVOLVED IN THAT

5628
03:21:36,160 --> 03:21:37,360
FINAL STAGE OF GETTING THINGS TO

5629
03:21:37,360 --> 03:21:40,240
THE FDA FOR APPROVAL.

5630
03:21:40,240 --> 03:21:44,520
I WOULD SAY ONE AREA WE'VE BEEN

5631
03:21:44,520 --> 03:21:46,480
VERY ACTIVE IN, WHICH JACQUELINE

5632
03:21:46,480 --> 03:21:48,080
MENTIONED, WAS THE

5633
03:21:48,080 --> 03:21:49,120
BRAIN-COMPUTER INTERFACE STORY.

5634
03:21:49,120 --> 03:21:52,320
PEOPLE MAY HAVE SEEN SOME OF THE

5635
03:21:52,320 --> 03:21:53,320
LITERATURE IN THE BRAIN

5636
03:21:53,320 --> 03:21:56,320
INITIATIVE PROJECTS, PEOPLE WITH

5637
03:21:56,320 --> 03:21:57,360
A.L.S. WHO ARE UNABLE TO SPEAK

5638
03:21:57,360 --> 03:21:58,480
ARE ABLE TO COMMUNICATE WITH

5639
03:21:58,480 --> 03:22:02,280
THESE REALLY SOPHISTICATED

5640
03:22:02,280 --> 03:22:05,440
BRAIN-COMPUTER INTERFACES, AND

5641
03:22:05,440 --> 03:22:06,760
SO ONE BIG CHALLENGE NOW, I

5642
03:22:06,760 --> 03:22:08,960
THINK, IS ACTUALLY GETTING THEM

5643
03:22:08,960 --> 03:22:13,400
TO THE FDA FOR THEIR

5644
03:22:13,400 --> 03:22:15,360
DISSEMINATION AND USE.

5645
03:22:15,360 --> 03:22:15,880
 IN THE

5646
03:22:15,880 --> 03:22:21,280
COMMERCIAL SPACE.

5647
03:22:21,280 --> 03:22:23,080
WE WORK VERY MUCH IN TANDEM WITH

5648
03:22:23,080 --> 03:22:24,400
FDA IN TERMS OF OPTIMIZING THE

5649
03:22:24,400 --> 03:22:25,040
A.L.S. CLINICAL RESEARCH.

5650
03:22:25,040 --> 03:22:27,960
WE MAY BE MORE PHASE

5651
03:22:27,960 --> 03:22:30,160
TWO-CENTERED THAN PHASE THREE

5652
03:22:30,160 --> 03:22:32,320
CENTERED, FDA BEING MORE PHASE

5653
03:22:32,320 --> 03:22:32,880
THREE CENTERED.

5654
03:22:32,880 --> 03:22:33,840
WE ALL WANT TO IMPROVE THE

5655
03:22:33,840 --> 03:22:35,000
QUALITY OF LIFE, AND I THINK

5656
03:22:35,000 --> 03:22:38,520
THAT THE STRATEGIC PLAN REALLY,

5657
03:22:38,520 --> 03:22:40,200
IF ONE THING IT TAUGHT US IS

5658
03:22:40,200 --> 03:22:41,880
THAT THERE'S SO MANY PEOPLE

5659
03:22:41,880 --> 03:22:45,840
WORKING ON THE SAME GOAL THAT

5660
03:22:45,840 --> 03:22:47,040
IDENTIFY A WAY OF BRINGING

5661
03:22:47,040 --> 03:22:48,040
PEOPLE TOGETHER FOR

5662
03:22:48,040 --> 03:22:50,720
COLLABORATIONS AND PARTNERSHIPS,

5663
03:22:50,720 --> 03:22:53,560
AND PUT SOME KIND OF A

5664
03:22:53,560 --> 03:22:55,080
CENTRALIZED PROCESS TOGETHER

5665
03:22:55,080 --> 03:22:58,120
WHERE PEOPLE CAN SEE WHAT'S

5666
03:22:58,120 --> 03:22:59,960
GOING ON, KNOW WHERE THE

5667
03:22:59,960 --> 03:23:00,920
PROGRESS IS, WHERE THE GAPS ARE,

5668
03:23:00,920 --> 03:23:02,440
I THINK THAT WILL HELP EVERYONE

5669
03:23:02,440 --> 03:23:07,320
GOING FORWARD.

5670
03:23:07,320 --> 03:23:09,360
SO GOING FORWARD, I THINK THE

5671
03:23:09,360 --> 03:23:12,000
STRATEGIC PLAN GIVES US A LOT OF

5672
03:23:12,000 --> 03:23:14,600
REALLY GOOD INFORMATION ON HOWL

5673
03:23:14,600 --> 03:23:25,200
HOWWE CAN PLAN HERE AT NINDS.

5674
03:23:25,200 --> 03:23:26,720
NOW DAN AND JACQUELINE TALKED

5675
03:23:26,720 --> 03:23:29,880
ABOUT THE BILL, AND SO THE BILL

5676
03:23:29,880 --> 03:23:37,960
HAS AS ITS -- THE BILL HAS AS

5677
03:23:37,960 --> 03:23:40,880
ITS GOAL TO DIRECT THE SECRETARY

5678
03:23:40,880 --> 03:23:41,560
OF HEALTH AND HUMAN SERVICES TO

5679
03:23:41,560 --> 03:23:43,480
SUPPORT RESEARCH ON EXPANDED

5680
03:23:43,480 --> 03:23:45,400
ACCESS TO INVESTIGATIONAL DRUGS

5681
03:23:45,400 --> 03:23:48,160
FOR A.L.S. AND FOR OTHER

5682
03:23:48,160 --> 03:23:48,640
PURPOSES.

5683
03:23:48,640 --> 03:23:52,520
SO WE HAVE A PROGRAM NOW WHERE

5684
03:23:52,520 --> 03:23:55,240
WE ARE ACTUALLY OPEN NOW.

5685
03:23:55,240 --> 03:23:58,160
WE STARTED JANUARY 9 OPEN FOR

5686
03:23:58,160 --> 03:23:59,080
APPLICATIONS TO COME IN FOR

5687
03:23:59,080 --> 03:24:00,880
GRANTS TO UTILIZE EXPANDED

5688
03:24:00,880 --> 03:24:03,520
ACCESS, AND WE WOULD FUND THE

5689
03:24:03,520 --> 03:24:04,840
MANUFACTURE AND THE

5690
03:24:04,840 --> 03:24:07,120
DISSEMINATION OF DRUGS, AND THE

5691
03:24:07,120 --> 03:24:10,200
RESEARCH THAT WOULD GO ON TO

5692
03:24:10,200 --> 03:24:11,520
UNDERSTAND A LOT OF THE

5693
03:24:11,520 --> 03:24:14,400
QUESTIONS THAT WERE POSED BY THE

5694
03:24:14,400 --> 03:24:16,600
WORKING GROUP AND THE STRATEGIC

5695
03:24:16,600 --> 03:24:18,160
PLAN ABOUT THINGS LIKE

5696
03:24:18,160 --> 03:24:21,480
BIOMARKERS, NATURAL HISTORY,

5697
03:24:21,480 --> 03:24:22,040
THROUGHOUT THE STAGES OF THE

5698
03:24:22,040 --> 03:24:26,720
DISEASE.

5699
03:24:26,720 --> 03:24:29,040
BUTTON NUMBER TWO IS THE

5700
03:24:29,040 --> 03:24:30,480
PUBLIC-PRIVATE PARTNERSHIP FOR

5701
03:24:30,480 --> 03:24:32,080
RARE NARROW DEGENERATIVE

5702
03:24:32,080 --> 03:24:32,840
DISEASES BETWEEN THE NIH AND

5703
03:24:32,840 --> 03:24:33,280
FDA.

5704
03:24:33,280 --> 03:24:34,800
YOU HEARD A LOT OF ABOUT THAT

5705
03:24:34,800 --> 03:24:35,520
FROM JACQUELINE.

5706
03:24:35,520 --> 03:24:38,720
SO THIS CALLS FOR PARTNERSHIPS

5707
03:24:38,720 --> 03:24:40,120
AND CONSORTIA WITH OTHER PUBLIC

5708
03:24:40,120 --> 03:24:41,640
AND PRIVATE ENTITIES WITH

5709
03:24:41,640 --> 03:24:46,000
EXPERTISE IN AMYOTROPHIC LATERA.

5710
03:24:46,000 --> 03:24:48,840
SO ONE THING WE'RE HOPING IS TO

5711
03:24:48,840 --> 03:24:50,320
BRING EVERYONE TOGETHER, LIKE I

5712
03:24:50,320 --> 03:24:51,520
JUST MENTIONED EARLIER, SO

5713
03:24:51,520 --> 03:24:52,520
EVERYBODY KIND OF KNOWS WHAT'S

5714
03:24:52,520 --> 03:24:53,800
GOING ON, WHAT THE GAPS ARE AND

5715
03:24:53,800 --> 03:24:55,120
WHERE WE CAN ACTUALLY PARTNER

5716
03:24:55,120 --> 03:24:59,040
AND COLLABORATE AND HAVE KIND OF

5717
03:24:59,040 --> 03:25:00,440
A CENTRAL PLACE WHERE ALL THIS

5718
03:25:00,440 --> 03:25:05,320
INFORMATION CAN COME.

5719
03:25:05,320 --> 03:25:07,720
FDA WILL BE FOCUSING ON

5720
03:25:07,720 --> 03:25:09,080
ADVANCING REGULATORY SCIENCE AND

5721
03:25:09,080 --> 03:25:11,120
THE RESEARCH THAT WILL SUPPORT

5722
03:25:11,120 --> 03:25:12,720
AND ACCELERATE THE REVIEW OF THE

5723
03:25:12,720 --> 03:25:14,480
DRUGS AND THE DEVELOPMENT.

5724
03:25:14,480 --> 03:25:18,160
I THINK NIH WOULD FOCUS MORE ON

5725
03:25:18,160 --> 03:25:20,440
THINGS THAT WOULD ACCELERATE THE

5726
03:25:20,440 --> 03:25:22,160
DEVELOPMENT OF NEW TARGETS,

5727
03:25:22,160 --> 03:25:24,040
VALIDATE NEW TARGETS, AND MAYBE

5728
03:25:24,040 --> 03:25:26,400
GET THEM INTO, YOU KNOW, KNOWING

5729
03:25:26,400 --> 03:25:27,400
WHAT POPULATION OF PATIENTS

5730
03:25:27,400 --> 03:25:30,440
WOULD BE BEST TO TEST IN A PHASE

5731
03:25:30,440 --> 03:25:32,640
2 TRIAL, THOSE KIND OF THINGS.

5732
03:25:32,640 --> 03:25:35,320
I THINK BOTH OF US WILL BE

5733
03:25:35,320 --> 03:25:36,200
INTERESTED IN LEARNING MORE

5734
03:25:36,200 --> 03:25:38,280
ABOUT THE NATURAL HISTORY, AND

5735
03:25:38,280 --> 03:25:39,760
ESPECIALLY GIVEN THE STRATEGIC

5736
03:25:39,760 --> 03:25:43,400
PLAN OF REALLY CONCENTRATING ON

5737
03:25:43,400 --> 03:25:46,280
FOLKS WHO ARE AT RISK FOR

5738
03:25:46,280 --> 03:25:48,840
DEVELOPING A.L.S.

5739
03:25:48,840 --> 03:25:56,320
CERTAINLY I WAS IN HUNDRED TINGS

5740
03:25:56,320 --> 03:25:58,280
DISEASE BEFORE COMING, AND THAT

5741
03:25:58,280 --> 03:26:05,480
WAS A REALLY BY PART OF HUNDRED

5742
03:26:05,480 --> 03:26:08,640
HUNTINGTON'S DISEASE, WE

5743
03:26:08,640 --> 03:26:09,640
ACTUALLY RAN EXPERIMENTS TO

5744
03:26:09,640 --> 03:26:11,400
ACTUALLY BE ABLE TO BE IN A

5745
03:26:11,400 --> 03:26:12,240
POSITION WHERE WE COULD TEST

5746
03:26:12,240 --> 03:26:14,600
THINGS IN PEOPLE WHO DO NOT HAVE

5747
03:26:14,600 --> 03:26:15,080
ANY MANIFESTATION OF THE

5748
03:26:15,080 --> 03:26:15,600
DISEASE.

5749
03:26:15,600 --> 03:26:17,920
YET THE IDEA WAS THAT WE WOULD

5750
03:26:17,920 --> 03:26:19,160
LEARN HOW TO SET UP CLINICAL

5751
03:26:19,160 --> 03:26:20,720
TRIALS THAT WOULD PREVENT THE

5752
03:26:20,720 --> 03:26:21,200
ONSET OF THE DISEASE.

5753
03:26:21,200 --> 03:26:22,440
SO I THINK THAT'S WHAT'S COMING

5754
03:26:22,440 --> 03:26:22,960
TO A.L.S.

5755
03:26:22,960 --> 03:26:24,240
THAT'S SOMETHING WE WOULD REALLY

5756
03:26:24,240 --> 03:26:25,360
LIKE TO DO.

5757
03:26:25,360 --> 03:26:26,160
WE WANT TO IDENTIFY THE

5758
03:26:26,160 --> 03:26:26,680
MOLECULAR TARGETS.

5759
03:26:26,680 --> 03:26:27,920
AND THEN THE OTHER CALL WAS TO

5760
03:26:27,920 --> 03:26:29,520
INCREASE THE EFFICIENCY OF

5761
03:26:29,520 --> 03:26:30,280
CLINICAL DEVELOPMENT OF

5762
03:26:30,280 --> 03:26:31,280
THERAPIES IN THE ESTABLISHMENT

5763
03:26:31,280 --> 03:26:32,440
OF CLINICAL TRIAL NETWORKS.

5764
03:26:32,440 --> 03:26:34,240
THE PARTNERSHIP ALLOWS US TO

5765
03:26:34,240 --> 03:26:36,600
WORK WITH GROUPS SUCH AS THE

5766
03:26:36,600 --> 03:26:37,800
CLINICAL PATH INSTITUTE, AND

5767
03:26:37,800 --> 03:26:38,960
WE'RE GOING TO BE TALKING ABOUT

5768
03:26:38,960 --> 03:26:41,240
THE FOUNDATION OF NIH, WHERE

5769
03:26:41,240 --> 03:26:43,000
THEY HAVE THE POWER UNDER THIS

5770
03:26:43,000 --> 03:26:44,960
BILL TO SOLICIT AND ACCEPT GIFTS

5771
03:26:44,960 --> 03:26:46,440
AND GRANTS, AND OTHER DONATIONS

5772
03:26:46,440 --> 03:26:48,080
TO KIND OF COORDINATE THIS KIND

5773
03:26:48,080 --> 03:26:53,120
OF ACTIVITY.

5774
03:26:53,120 --> 03:26:54,440
AND THEN THE FDA, JACQUELINE

5775
03:26:54,440 --> 03:26:59,840
TALKED TO YOU ABOUT THE RARE

5776
03:26:59,840 --> 03:27:00,480
NEURODEGENERATIVE DISEASE GRANT

5777
03:27:00,480 --> 03:27:01,440
PROGRAM.

5778
03:27:01,440 --> 03:27:02,480
SO JACQUELINE ALSO TALKED ABOUT

5779
03:27:02,480 --> 03:27:03,800
THE PUBLIC-PRIVATE PARTNERSHIP

5780
03:27:03,800 --> 03:27:05,280
THAT'S ESTABLISHED ALREADY, AND

5781
03:27:05,280 --> 03:27:08,880
THAT'S WITH THE NIH AND THE FDA,

5782
03:27:08,880 --> 03:27:09,880
AND PARTICULARLY WITH THE

5783
03:27:09,880 --> 03:27:12,480
CRITICAL PATH INSTITUTE AND

5784
03:27:12,480 --> 03:27:14,960
NINDS HAS HAD REALLY GOOD

5785
03:27:14,960 --> 03:27:16,960
RELATIONSHIPS WITH THE CRITICAL

5786
03:27:16,960 --> 03:27:18,080
PATH INSTITUTES.

5787
03:27:18,080 --> 03:27:20,120
I KNOW JANE WAS ACTUALLY AT THE

5788
03:27:20,120 --> 03:27:22,280
CLINICAL PATH INSTITUTE PRIOR TO

5789
03:27:22,280 --> 03:27:24,120
COMING ON COUNCIL.

5790
03:27:24,120 --> 03:27:25,480
AND I THINK THERE'S A LOT THAT

5791
03:27:25,480 --> 03:27:29,240
WE CAN DO TOGETHER IN THIS

5792
03:27:29,240 --> 03:27:30,880
SPACE, PARTICULARLY ON

5793
03:27:30,880 --> 03:27:34,360
ACCELERATING THE INNOVATION IN

5794
03:27:34,360 --> 03:27:35,880
REGULATORY SCIENCE BEHIND THE

5795
03:27:35,880 --> 03:27:39,720
R & D.

5796
03:27:39,720 --> 03:27:43,960
WHAT WE'D LIKE TO DO ALSO IS TO

5797
03:27:43,960 --> 03:27:46,240
WORK WITH OUR PARTNERS AT THE

5798
03:27:46,240 --> 03:27:51,400
FOUNDATION FOR NIH TO DEVELOP A

5799
03:27:51,400 --> 03:27:52,600
PORTAL OF HARMONIZING DATA

5800
03:27:52,600 --> 03:27:55,000
COMING IN FROM ALL SEGMENTS OF

5801
03:27:55,000 --> 03:27:58,320
A.L.S. RESEARCH.

5802
03:27:58,320 --> 03:27:59,680
THIS, OF COURSE, WOULD BE

5803
03:27:59,680 --> 03:28:01,320
VOLUNTARY FOR THE NON-PROFIT

5804
03:28:01,320 --> 03:28:02,200
ORGANIZATIONS, BUT HOPING THEY

5805
03:28:02,200 --> 03:28:04,800
CAN SEE THE BENEFIT OF BRINGING

5806
03:28:04,800 --> 03:28:08,520
THEIR DATA IN TO A SINGLE

5807
03:28:08,520 --> 03:28:09,240
PORTAL.

5808
03:28:09,240 --> 03:28:11,160
WE AT NIH WOULD PROBABLY VERY

5809
03:28:11,160 --> 03:28:14,480
SOON MANDATE THAT ALL OUR

5810
03:28:14,480 --> 03:28:15,120
GRANTS, THE DATA WOULD HAVE TO

5811
03:28:15,120 --> 03:28:16,680
COME IN TO SUCH A PORTAL, AND I

5812
03:28:16,680 --> 03:28:18,960
THINK THE FDA COULD CONSIDER

5813
03:28:18,960 --> 03:28:22,240
SIMILARLY DOING THAT.

5814
03:28:22,240 --> 03:28:24,960
AND THAT IS -- IT'S SOMEWHAT

5815
03:28:24,960 --> 03:28:25,640
BASED ON THE EXPERIENCE WE'VE

5816
03:28:25,640 --> 03:28:28,880
HAD WORKING WITH THE FNIH IN

5817
03:28:28,880 --> 03:28:29,520
PARKINSON'S DISEASE, WHERE WE

5818
03:28:29,520 --> 03:28:31,720
HAVE THIS REALLY TREMENDOUS DATA

5819
03:28:31,720 --> 03:28:33,160
PORTAL FOR ALL THE CLINICAL

5820
03:28:33,160 --> 03:28:33,760
DATA.

5821
03:28:33,760 --> 03:28:36,840
THIS IS CLINICAL DATA,

5822
03:28:36,840 --> 03:28:39,000
PATIENT-LEVEL DATA AND

5823
03:28:39,000 --> 03:28:42,320
PARKINSON'S ALL COMING TOGETHER.

5824
03:28:42,320 --> 03:28:44,280
AND THE CONSORTIUM OF PEOPLE WHO

5825
03:28:44,280 --> 03:28:45,400
WOULD POTENTIALLY BE INVOLVED

5826
03:28:45,400 --> 03:28:47,920
AND HOPEFULLY SEE VALUE WOULD BE

5827
03:28:47,920 --> 03:28:51,800
THE ACADEMIC A.L.S.

5828
03:28:51,800 --> 03:28:55,960
INVESTIGATORS, THE FDA, THE

5829
03:28:55,960 --> 03:28:57,440
CRITICAL PATH INSTITUTE,

5830
03:28:57,440 --> 03:28:58,560
PHARMACEUTICAL COMPANIES,

5831
03:28:58,560 --> 03:29:00,440
NON-PROFIT ORGANIZATIONS,

5832
03:29:00,440 --> 03:29:01,400
BIOTECH COMPANIES, THE

5833
03:29:01,400 --> 03:29:03,000
FOUNDATION FOR NIH, AND NIH

5834
03:29:03,000 --> 03:29:04,720
ITSELF.

5835
03:29:04,720 --> 03:29:06,840
AND HIT THE BUTTON ONCE MORE.

5836
03:29:06,840 --> 03:29:08,240
AND WHAT WE'VE DONE IN

5837
03:29:08,240 --> 03:29:09,800
PARKINSON'S AND WHAT WE WOULD

5838
03:29:09,800 --> 03:29:13,440
THINK ABOUT DOING IN A.L.S. IS

5839
03:29:13,440 --> 03:29:14,760
DEVELOPING A GROUP THAT WOULD GO

5840
03:29:14,760 --> 03:29:16,840
OUT AND COLLECT DATA AND COLLECT

5841
03:29:16,840 --> 03:29:21,080
SAMPLES AND DEVELOPING A

5842
03:29:21,080 --> 03:29:22,280
BIOREPOSITORY WHERE BLOOD

5843
03:29:22,280 --> 03:29:24,280
SAMPLES, SPINAL FLUID SAMPLES,

5844
03:29:24,280 --> 03:29:25,080
POTENTIALLY TISSUE SAMPLES COULD

5845
03:29:25,080 --> 03:29:28,720
BE STORED TO DO REALLY IN DEPTH

5846
03:29:28,720 --> 03:29:30,040
CLINICAL PHENOTYPING OF THE

5847
03:29:30,040 --> 03:29:32,520
DIFFERENT TYPES OF A.L.S.,

5848
03:29:32,520 --> 03:29:36,760
TRYING TO UNDERSTAND THE DISEASE

5849
03:29:36,760 --> 03:29:38,120
PROGRESSION, WHAT DETERMINE AS

5850
03:29:38,120 --> 03:29:39,840
SLOW PROGRESSION FROM A FAST

5851
03:29:39,840 --> 03:29:42,480
PROGRESSION, GETTING OLD GENOME

5852
03:29:42,480 --> 03:29:44,000
SEQUENCING ON HUNDREDS AND

5853
03:29:44,000 --> 03:29:47,040
THOUSANDS OF PEOPLE COLLECTING

5854
03:29:47,040 --> 03:29:48,560
CSF AND BLOOD, NOT ONLY

5855
03:29:48,560 --> 03:29:50,000
COLLECTING IT BUT ANALYZING IT

5856
03:29:50,000 --> 03:29:52,800
FOR, SAY, TRANSCRIPTOMICS OR

5857
03:29:52,800 --> 03:29:53,600
PROTEOMICS.

5858
03:29:53,600 --> 03:29:57,640
ONE BIG AREA NOW THAT'S

5859
03:29:57,640 --> 03:29:59,160
EXPLODING IN NEURODEGENERATIVE

5860
03:29:59,160 --> 03:30:01,840
DISEASE SCIENCE IS EXAMINING

5861
03:30:01,840 --> 03:30:03,280
SPINAL CORD AND BRAIN AT A

5862
03:30:03,280 --> 03:30:03,720
SINGLE CELL LEVEL.

5863
03:30:03,720 --> 03:30:05,080
THIS CAN BE DONE IN AUTOPSY

5864
03:30:05,080 --> 03:30:07,680
TISSUE NOW, AND YOU CAN

5865
03:30:07,680 --> 03:30:08,880
UNDERSTAND WHAT IS ACTUALLY

5866
03:30:08,880 --> 03:30:11,160
GOING ON AT THE CELL LEVEL, AS

5867
03:30:11,160 --> 03:30:12,600
THE CELLS BECOME SICK.

5868
03:30:12,600 --> 03:30:17,160
AND THIS LEADS TO POTENTIAL NEW

5869
03:30:17,160 --> 03:30:19,360
THERAPEUTIC TARGETS THAT NO ONE

5870
03:30:19,360 --> 03:30:21,120
COULD EVER GET TO WITHOUT THIS

5871
03:30:21,120 --> 03:30:22,680
NEW TECHNOLOGY, WHICH ACTUALLY

5872
03:30:22,680 --> 03:30:23,520
CAME OUT OF THE BRAIN

5873
03:30:23,520 --> 03:30:24,680
INITIATIVE.

5874
03:30:24,680 --> 03:30:26,240
OTHER THINGS IMPORTANT FOR

5875
03:30:26,240 --> 03:30:33,800
A.L.S. WOULD BE NEUROAND MUSCLE

5876
03:30:33,800 --> 03:30:34,840
IMAGING.

5877
03:30:34,840 --> 03:30:36,240
GO BACK ONE SECOND.

5878
03:30:36,240 --> 03:30:37,760
IMAGING OF THE MUSCLE WHICH

5879
03:30:37,760 --> 03:30:39,840
ATROPHIES AND THE MOTOR CORTEX

5880
03:30:39,840 --> 03:30:41,480
AND MOTOR SYSTEM,

5881
03:30:41,480 --> 03:30:45,080
NEUROPHYSIOLOGY TESTING, AND

5882
03:30:45,080 --> 03:30:47,480
THEN THE INDUCED PLURIPOTENT

5883
03:30:47,480 --> 03:30:49,320
CELLS WHICH HAVE BEEN SO

5884
03:30:49,320 --> 03:30:53,080
VALUABLE IN STUDYING FORMS OF

5885
03:30:53,080 --> 03:30:55,000
A.L.S. IDENTIFYING REAL TARGETS

5886
03:30:55,000 --> 03:30:56,440
FOR THERAPIES AND THE BIG

5887
03:30:56,440 --> 03:30:57,640
QUESTION AS POSED BY THE

5888
03:30:57,640 --> 03:30:59,040
STRATEGIC WORKING GROUP, HOW TO

5889
03:30:59,040 --> 03:31:00,440
MOVE FROM THESE ADVANCES IN

5890
03:31:00,440 --> 03:31:02,840
GENETIC THERAPIES TO THE

5891
03:31:02,840 --> 03:31:03,960
SPORADIC A.L.S.

5892
03:31:03,960 --> 03:31:08,120
BUT TO HAVE -- THERE HAVE BEEN

5893
03:31:08,120 --> 03:31:09,280
SPLICING ABNORMALITIES THAT HAVE

5894
03:31:09,280 --> 03:31:11,480
BEEN FOUND RELATED IN THE

5895
03:31:11,480 --> 03:31:14,080
GENETIC FORM AND RELATED TO A

5896
03:31:14,080 --> 03:31:16,720
PROTEIN WHICH IS FOUND IN ALL

5897
03:31:16,720 --> 03:31:18,240
A.L.S., EVEN THE SPORADIC.

5898
03:31:18,240 --> 03:31:22,040
SO THERE HAVE BEEN THESE TIES

5899
03:31:22,040 --> 03:31:23,960
BETWEEN THE GENETIC FORMS AND

5900
03:31:23,960 --> 03:31:24,880
THE SPORADIC FORMS, AND THESE

5901
03:31:24,880 --> 03:31:26,640
CAN BE REALLY EXPLORED WITH

5902
03:31:26,640 --> 03:31:29,600
THESE INDUCED PLURIPOTENT CELLS

5903
03:31:29,600 --> 03:31:30,800
THAT CAN THEN BE TURNED INTO

5904
03:31:30,800 --> 03:31:32,320
MOTOR NEURONS.

5905
03:31:32,320 --> 03:31:33,600
COLLECTING THESE AND MAKING THEM

5906
03:31:33,600 --> 03:31:35,760
AVAILABLE FOR PEOPLE TO STUDY

5907
03:31:35,760 --> 03:31:37,200
WOULD BE SOMETHING THAT WE COULD

5908
03:31:37,200 --> 03:31:39,240
CONSIDER AS PART OF THIS BIG

5909
03:31:39,240 --> 03:31:44,840
PROGRAM.

5910
03:31:44,840 --> 03:31:47,080
SO IT ALL STARTS IF WE THINK

5911
03:31:47,080 --> 03:31:47,880
ABOUT THE IDEAS OF HOW THE DATA

5912
03:31:47,880 --> 03:31:50,520
WOULD FLOW, IT ALL STARTS WITH

5913
03:31:50,520 --> 03:31:52,080
PERSONS WITH A.L.S. OR PEOPLE

5914
03:31:52,080 --> 03:31:57,440
WHO ARE AT RISK FOR A.L.S. SO

5915
03:31:57,440 --> 03:31:59,800
THIS IS NOT BASIC NEUROSCIENCE,

5916
03:31:59,800 --> 03:32:01,040
THIS IS ALL CLINICAL WORK, AND

5917
03:32:01,040 --> 03:32:02,960
IT WOULD INCLUDE THE NIH AND THE

5918
03:32:02,960 --> 03:32:04,240
FDA FUNDED RESEARCH LIKE I

5919
03:32:04,240 --> 03:32:04,920
MENTIONED.

5920
03:32:04,920 --> 03:32:07,400
WE'RE HOPING WE COULD BRING IN

5921
03:32:07,400 --> 03:32:09,600
INDUSTRY TO BRING IN THEIR DATA,

5922
03:32:09,600 --> 03:32:11,320
CERTAINLY THE FDA AND THE

5923
03:32:11,320 --> 03:32:12,520
CRITICAL PATH INSTITUTE HAVE

5924
03:32:12,520 --> 03:32:16,040
BEEN VERY SUCCESSFUL THERE.

5925
03:32:16,040 --> 03:32:18,880
BUT ALSO TO ENGAGE NON-PROFITS

5926
03:32:18,880 --> 03:32:20,160
LIKE TARGET A.L.S. OR THE OTHER

5927
03:32:20,160 --> 03:32:24,000
A.L.S. ORGANIZATIONS THAT HAVE

5928
03:32:24,000 --> 03:32:25,720
DATA OR COULD HELP US IN THIS

5929
03:32:25,720 --> 03:32:27,520
GREAT EFFORT.

5930
03:32:27,520 --> 03:32:29,800
AND TO DO THIS, THOUGH, WE NEED

5931
03:32:29,800 --> 03:32:34,040
PEOPLE ON THE GROUND FLOOR,

5932
03:32:34,040 --> 03:32:35,160
WE'RE THINKING SETTING UP A

5933
03:32:35,160 --> 03:32:36,800
CONSORTIA OF SITES THAT WILL BE

5934
03:32:36,800 --> 03:32:38,200
ABLE TO COLLECT THIS KIND OF

5935
03:32:38,200 --> 03:32:39,760
DATA, WORK TOGETHER TOWARDS A

5936
03:32:39,760 --> 03:32:41,800
COMMON GOAL, AND I WOULD SAY

5937
03:32:41,800 --> 03:32:43,560
ALSO THAT ONE OF THE ISSUES WITH

5938
03:32:43,560 --> 03:32:46,440
EXPANDED ACCESS IS THAT THERE

5939
03:32:46,440 --> 03:32:50,080
ISN'T THE JIE GIANT WORKFORCE TE

5940
03:32:50,080 --> 03:32:51,960
ABLE TO MAKE THESE

5941
03:32:51,960 --> 03:32:52,720
INVESTIGATIONAL DRUGS AVAILABLE

5942
03:32:52,720 --> 03:32:55,440
ACROSS THE COUNTRY SO EXPANDING

5943
03:32:55,440 --> 03:32:57,160
THE WORKFORCE IN SUCH A

5944
03:32:57,160 --> 03:32:58,720
CONSORTIA WOULD ALSO HELP

5945
03:32:58,720 --> 03:33:03,280
GREATLY IN EXPANDING THE ACCESS

5946
03:33:03,280 --> 03:33:07,360
OF PATIENTS TO INVESTIGATIONAL

5947
03:33:07,360 --> 03:33:08,840
DRUGS WHICH WAS AND REMAINS THE

5948
03:33:08,840 --> 03:33:11,600
PRIMARY AIM OF THE A.L.S. BILL.

5949
03:33:11,600 --> 03:33:14,320
THE KEY TO THIS IS THAT THESE

5950
03:33:14,320 --> 03:33:17,600
DATA THAT EVERYONE IS COLLECTING

5951
03:33:17,600 --> 03:33:18,360
BECOMES COMPARABLE.

5952
03:33:18,360 --> 03:33:19,560
SO YOU NEED TO HARMONIZE THE

5953
03:33:19,560 --> 03:33:20,520
DATA.

5954
03:33:20,520 --> 03:33:22,480
WE'VE DONE THIS MULTIPLE TIMES

5955
03:33:22,480 --> 03:33:24,480
IN DIFFERENT DISEASES.

5956
03:33:24,480 --> 03:33:26,440
THIS IS A VERY HARD, LABORIOUS

5957
03:33:26,440 --> 03:33:28,480
AND EXPENSIVE PROCESS.

5958
03:33:28,480 --> 03:33:30,000
AND THERE ARE WAYS IN WHICH WE

5959
03:33:30,000 --> 03:33:32,120
CAN STREAMLINE IT GOING INTO THE

5960
03:33:32,120 --> 03:33:32,760
FUTURE.

5961
03:33:32,760 --> 03:33:37,560
EVEN THEN, IT REQUIRES A LOT OF

5962
03:33:37,560 --> 03:33:38,560
EFFORT TO MAKE SURE YOU HAVE

5963
03:33:38,560 --> 03:33:40,160
REALLY GOOD DATA WHEN YOU BRING

5964
03:33:40,160 --> 03:33:41,600
INTO YOUR PORTAL, AND THE IDEA

5965
03:33:41,600 --> 03:33:42,760
IS THAT WE CAN DO THAT AND THEN

5966
03:33:42,760 --> 03:33:49,240
BRING IT INTO THE PORTAL, MIGHT

5967
03:33:49,240 --> 03:33:52,920
BE A PORTAL THAT IS

5968
03:33:52,920 --> 03:33:54,040
FIT-FOR-PURPOSE FOR WHAT THE

5969
03:33:54,040 --> 03:33:55,640
FDA'S PURPOSES ARE AND ANOTHER

5970
03:33:55,640 --> 03:33:58,720
MIGHT BE FIT-FOR-PURPOSE WHAT

5971
03:33:58,720 --> 03:34:01,680
THE NIH'S PURPOSES ARE, MAYBE

5972
03:34:01,680 --> 03:34:02,960
MORE OF THE PHASE TWO EARLY

5973
03:34:02,960 --> 03:34:03,920
TARGET IDENTIFICATION COMPARED

5974
03:34:03,920 --> 03:34:05,560
TO THE REGULATORY SCIENCE.

5975
03:34:05,560 --> 03:34:06,760
SO THEY'RE VERY COMPLEMENTARY,

5976
03:34:06,760 --> 03:34:08,240
AND THEY HAVE TO HAVE COMMON

5977
03:34:08,240 --> 03:34:09,720
DATA SO YOU CAN GO BACK BETWEEN

5978
03:34:09,720 --> 03:34:11,040
ONE AND THE OTHER, BUT THIS

5979
03:34:11,040 --> 03:34:13,200
WOULD OFFER THE OPPORTUNITY TO

5980
03:34:13,200 --> 03:34:14,440
REALLY PUT THE EFFORTS OF BOTH

5981
03:34:14,440 --> 03:34:17,480
OUR AGENCIES TOGETHER TO SOLVE

5982
03:34:17,480 --> 03:34:19,640
THIS PROBLEM.

5983
03:34:19,640 --> 03:34:21,080
AND I THINK I'M GOING TO END UP

5984
03:34:21,080 --> 03:34:23,920
ON THIS SLIDE, AND BECAUSE I

5985
03:34:23,920 --> 03:34:27,400
THINK THAT A LOT OF THE A.L.S.

5986
03:34:27,400 --> 03:34:30,800
STRATEGIC PRIORITIES COULD BE

5987
03:34:30,800 --> 03:34:33,080
FURTHERED BY THIS TYPE OF

5988
03:34:33,080 --> 03:34:33,720
PUBLIC-PRIVATE PARTNERSHIP WHERE

5989
03:34:33,720 --> 03:34:35,400
WE'RE COLLECTING DATA, BRINGING

5990
03:34:35,400 --> 03:34:37,840
IT TOGETHER, COLLABORATION,

5991
03:34:37,840 --> 03:34:42,040
DECIDING ON WHAT DATA WE GET

5992
03:34:42,040 --> 03:34:43,360
NEXT, WHAT THINGS SHOULD WE

5993
03:34:43,360 --> 03:34:44,360
ANALYZE, BUT BRING ALL THE

5994
03:34:44,360 --> 03:34:45,640
RESULTS TOGETHER SO THAT THOSE

5995
03:34:45,640 --> 03:34:49,160
RESULTS ARE AVAILABLE TO

5996
03:34:49,160 --> 03:34:50,200
SCIENTISTS AROUND THE WORLD.

5997
03:34:50,200 --> 03:34:52,960
SO I THINK THAT THE CONSORTIA

5998
03:34:52,960 --> 03:34:54,160
THAT COLLECTS THE DATA WORKING

5999
03:34:54,160 --> 03:34:58,080
IN A VERY COLLABORATIVE BUT, YOU

6000
03:34:58,080 --> 03:35:00,720
KNOW, USING STANDARD OPERATING

6001
03:35:00,720 --> 03:35:03,000
PROCEDURES, WORKING UNDER MASTER

6002
03:35:03,000 --> 03:35:04,440
PROTOCOLS, ALL THE THINGS

6003
03:35:04,440 --> 03:35:07,880
MENTIONED IN THE STRATEGIC PLAN

6004
03:35:07,880 --> 03:35:10,440
WOULD REALLY ACCELERATE THE

6005
03:35:10,440 --> 03:35:13,520
ACQUISITION OF REALLY GOOD DATA,

6006
03:35:13,520 --> 03:35:17,080
AND THEN HARMONIZING IT WOULD

6007
03:35:17,080 --> 03:35:19,440
MAKE IT MUCH MORE VALUABLE THAN

6008
03:35:19,440 --> 03:35:23,240
IT IS NOW, AND I THINK WE CAN,

6009
03:35:23,240 --> 03:35:26,200
YOU KNOW -- I THINK THAT THE

6010
03:35:26,200 --> 03:35:29,840
PROJECT IS SO ATTRACTIVE THAT I

6011
03:35:29,840 --> 03:35:32,720
THINK MY GUESS IS THAT ANYONE IN

6012
03:35:32,720 --> 03:35:33,720
THE A.L.S. FIELD IS GOING TO

6013
03:35:33,720 --> 03:35:35,280
WANT TO BE PART OF THIS, AND WE

6014
03:35:35,280 --> 03:35:40,000
WANT THEM TO BE PART OF IT AND

6015
03:35:40,000 --> 03:35:41,080
WE'LL DO EVERYTHING WE CAN TO

6016
03:35:41,080 --> 03:35:41,720
MAKE THAT HAPPEN.

6017
03:35:41,720 --> 03:35:43,920
SO I'M REALLY EXCITED GOING

6018
03:35:43,920 --> 03:35:45,480
FORWARD WITH OUR NON-PROFIT

6019
03:35:45,480 --> 03:35:48,920
GROUPS, WITH THE FDA, NIH, AND

6020
03:35:48,920 --> 03:35:50,000
HOPING ALSO TO BRING INDUSTRY

6021
03:35:50,000 --> 03:35:53,600
INTO THIS MIX, BECAUSE THE OTHER

6022
03:35:53,600 --> 03:35:56,160
ONES WHO ARE GOING TO TELL US

6023
03:35:56,160 --> 03:35:59,560
WHAT THEY NEED TO GET THEIR

6024
03:35:59,560 --> 03:36:01,400
DRUGS OUT OF THEIR LABS AND

6025
03:36:01,400 --> 03:36:02,880
ACTUALLY INTO PEOPLE, AND THEN

6026
03:36:02,880 --> 03:36:06,480
WORKING WITH THE FDA, MOVING

6027
03:36:06,480 --> 03:36:07,640
FROM PHASE TWO TO PHASE THREE

6028
03:36:07,640 --> 03:36:08,840
AND HOPEFULLY TO APPROVALS.

6029
03:36:08,840 --> 03:36:11,520
SO I REALLY AM VERY OPTIMISTIC

6030
03:36:11,520 --> 03:36:13,440
AND KIND OF SEE FROM BEGINNING

6031
03:36:13,440 --> 03:36:16,600
TO END HOW THIS PUBLIC PRIVATE

6032
03:36:16,600 --> 03:36:18,800
PARTNERSHIP CAN GET US TO OUR

6033
03:36:18,800 --> 03:36:20,000
EVENTUAL GOAL, WHICH IS

6034
03:36:20,000 --> 03:36:21,360
EFFECTIVE THERAPIES FOR PEOPLE

6035
03:36:21,360 --> 03:36:22,720
WITH A.L.S. AND ACTUALLY

6036
03:36:22,720 --> 03:36:25,200
EFFECTIVE THERAPIES THAT CAN

6037
03:36:25,200 --> 03:36:27,160
PREVENT A.L.S. FROM SETTING IN

6038
03:36:27,160 --> 03:36:28,360
IN PEOPLE WHO ARE AT RISK.

6039
03:36:28,360 --> 03:36:29,360
SO THANKS FOR YOUR ATTENTION.

6040
03:36:29,360 --> 03:36:32,520
WE'RE REALLY INTERESTED IN ANY

6041
03:36:32,520 --> 03:36:32,960
COMMENTS.

6042
03:36:32,960 --> 03:36:34,400
WE'RE STILL WORKING THIS OUT,

6043
03:36:34,400 --> 03:36:39,840
AND SO ANY SUGGESTIONS ARE VERY

6044
03:36:39,840 --> 03:36:40,560
WELCOME AND YOU CAN ALWAYS EMAIL

6045
03:36:40,560 --> 03:36:41,160
ME.

6046
03:36:41,160 --> 03:36:44,080
GO TO THE LAST SLIDE.

6047
03:36:44,080 --> 03:36:45,880
THE LAST SLIDE JUST HAS MY EMAIL

6048
03:36:45,880 --> 03:36:48,040
AT THE BOTTOM, AND IT ALSO HAS

6049
03:36:48,040 --> 03:36:51,880
THE PEOPLE HERE IN OUR NINDS

6050
03:36:51,880 --> 03:36:53,720
A.L.S. WORKING GROUP, WHICH HAVE

6051
03:36:53,720 --> 03:36:55,800
BEEN, YOU KNOW, TREMENDOUS IN

6052
03:36:55,800 --> 03:36:57,120
WORKING ON NOT ONLY THE

6053
03:36:57,120 --> 03:36:58,800
STRATEGIC PLAN BUT ALSO ON THE

6054
03:36:58,800 --> 03:37:02,680
WORK WITH THE FDA AND THE

6055
03:37:02,680 --> 03:37:03,960
NASCENT PUBLIC-PRIVATE

6056
03:37:03,960 --> 03:37:04,240
PARTNERSHIP.

6057
03:37:04,240 --> 03:37:05,080
SO THANKS VERY MUCH FOR YOUR

6058
03:37:05,080 --> 03:37:10,560
ATTENTION.

6059
03:37:10,560 --> 03:37:10,880
>>OKAY.

6060
03:37:10,880 --> 03:37:13,000
WE DO HAVE -- WE'RE BEHIND TIME,

6061
03:37:13,000 --> 03:37:15,000
BUT I DON'T REALLY CARE.

6062
03:37:15,000 --> 03:37:17,480
WE DO HAVE TIME FOR A COUPLE OF

6063
03:37:17,480 --> 03:37:19,520
QUESTIONS.

6064
03:37:19,520 --> 03:37:21,080
I WISH WE HAD A LOT OF TIME TO

6065
03:37:21,080 --> 03:37:22,320
HAVE DISCUSSION BECAUSE THIS HAS

6066
03:37:22,320 --> 03:37:27,160
BEEN A WONDERFUL SEGMENT.

6067
03:37:27,160 --> 03:37:27,720
HANK?

6068
03:37:27,720 --> 03:37:28,880
HANK PAULSON.

6069
03:37:28,880 --> 03:37:30,360
>>AGAIN, VERY INSPIRING,
ALL

6070
03:37:30,360 --> 03:37:31,760
THE PEOPLE THAT PRESENTED ON THE

6071
03:37:31,760 --> 03:37:32,760
STRATEGIC PLAN, I REALLY

6072
03:37:32,760 --> 03:37:33,160
APPRECIATE THAT.

6073
03:37:33,160 --> 03:37:34,360
AND THANK YOU, WALTER.

6074
03:37:34,360 --> 03:37:38,080
THINGS I HEARD WERE CENTERS OF

6075
03:37:38,080 --> 03:37:40,600
EXCELLENCE, THE NEED FOR

6076
03:37:40,600 --> 03:37:42,120
BIOMARKERS, THE NEED FOR A

6077
03:37:42,120 --> 03:37:42,800
NETWORK OF CLINICAL TRIAL SITES.

6078
03:37:42,800 --> 03:37:44,960
THERE ARE SO MANY DIFFERENT

6079
03:37:44,960 --> 03:37:46,240
MODELS OF RESEARCH CENTERS OF

6080
03:37:46,240 --> 03:37:49,520
EXCELLENCE, RESEARCH CENTERS,

6081
03:37:49,520 --> 03:37:53,680
ALZHEIMER'S FTD, HD, ATAXIA.

6082
03:37:53,680 --> 03:37:54,880
YOU CAN'T DO EVERYTHING IF YOU

6083
03:37:54,880 --> 03:37:58,800
WANT TO MEET THIS MOLECULAR

6084
03:37:58,800 --> 03:38:00,760
CLOCK, THERE'S AN URGENT TIME

6085
03:38:00,760 --> 03:38:05,760
PRESPRESSURE TO GET TRIALS UNDE.

6086
03:38:05,760 --> 03:38:07,000
SO I WOULD ENVISION THAT WHAT

6087
03:38:07,000 --> 03:38:09,320
YOU WOULD SEE AMONG THE CENTERS

6088
03:38:09,320 --> 03:38:10,600
THE NETWORK OF CENTERS IS BOTH

6089
03:38:10,600 --> 03:38:11,920
AN OPPORTUNITY TO COLLECT

6090
03:38:11,920 --> 03:38:13,600
BIOMARKER DATA AND TO IMPLEMENT

6091
03:38:13,600 --> 03:38:14,520
CLINICAL TRIALS.

6092
03:38:14,520 --> 03:38:15,640
I WAS JUST CURIOUS IF ANY

6093
03:38:15,640 --> 03:38:18,160
MEMBERS OF THE PANEL, BOB,

6094
03:38:18,160 --> 03:38:19,080
LAYNE, ANYBODY HAVE THOUGHTS

6095
03:38:19,080 --> 03:38:21,640
ABOUT THIS, WALTER AS WELL, HOW

6096
03:38:21,640 --> 03:38:23,400
YOU WOULD STREAMLINE HAVING A

6097
03:38:23,400 --> 03:38:24,600
CENTER THAT CAN DO THE MOST

6098
03:38:24,600 --> 03:38:26,040
IMPORTANT THINGS AND NOT

6099
03:38:26,040 --> 03:38:27,080
EVERYTHING WALTER WAS TALKING

6100
03:38:27,080 --> 03:38:28,320
ABOUT BECAUSE THERE'S A LOT OF

6101
03:38:28,320 --> 03:38:29,160
THINGS WALTER MENTIONED.

6102
03:38:29,160 --> 03:38:30,280
>>SO I'LL COMMENT
BRIEFLY,

6103
03:38:30,280 --> 03:38:30,600
HANK.

6104
03:38:30,600 --> 03:38:31,960
I THINK THAT'S A GOOD ISSUE AND

6105
03:38:31,960 --> 03:38:33,240
IN FACT THAT WAS DISCUSSED IN

6106
03:38:33,240 --> 03:38:34,680
SOME OF THE MEETINGS.

6107
03:38:34,680 --> 03:38:36,320
SO FOR EXAMPLE, YOU WILL SEE IN

6108
03:38:36,320 --> 03:38:39,360
THE DOCUMENT THAT THERE ARE FOUR

6109
03:38:39,360 --> 03:38:41,440
TYPES OF CORES RECOMMENDED,

6110
03:38:41,440 --> 03:38:42,160
GENETICS IS ONE OF THEM.

6111
03:38:42,160 --> 03:38:44,000
SO I WOULD ARGUE THAT NOT EVERY

6112
03:38:44,000 --> 03:38:45,160
CENTER FOR EXCELLENCE SHOULD DO

6113
03:38:45,160 --> 03:38:45,480
EVERYTHING.

6114
03:38:45,480 --> 03:38:46,920
THAT IS TO SAY, NOT EVERYONE

6115
03:38:46,920 --> 03:38:48,560
SHOULD BE EXPECTED TO HAVE A

6116
03:38:48,560 --> 03:38:49,400
GENETICS CORE.

6117
03:38:49,400 --> 03:38:53,040
BUT I THINK WHAT SHOULD BE

6118
03:38:53,040 --> 03:38:58,480
MANDATORY IS AN INCLUSIVE REALLY

6119
03:38:58,480 --> 03:39:00,760
DIVERSE POPULATION THAT IS

6120
03:39:00,760 --> 03:39:02,200
CLINICALLY ASSESSED ACCORDING TO

6121
03:39:02,200 --> 03:39:05,280
STANDARDIZED APPROACHES WITH

6122
03:39:05,280 --> 03:39:07,880
QUANTITATIVE PHENOTYPIC FEATURES

6123
03:39:07,880 --> 03:39:10,520
THAT AT LEAST ALLOW CLINICAL

6124
03:39:10,520 --> 03:39:11,480
COMPARISON ACROSS MULTIPLE SITES

6125
03:39:11,480 --> 03:39:12,800
AND THAT PART OF THAT BE THE

6126
03:39:12,800 --> 03:39:14,960
COLLECTION FOR THE VARIOUS

6127
03:39:14,960 --> 03:39:16,640
REPOSITORIES OF BAYOU FLUIDS.

6128
03:39:16,640 --> 03:39:18,600
DNA AND SO FORTH.

6129
03:39:18,600 --> 03:39:19,280
I DON'T KNOW IF THAT ANSWERS

6130
03:39:19,280 --> 03:39:20,920
YOUR QUESTION, BUT I DON'T THINK

6131
03:39:20,920 --> 03:39:22,400
PERSONALLY THAT THEY NEED TO BE

6132
03:39:22,400 --> 03:39:24,080
CARBON COPIES OF EACH OTHER, BUT

6133
03:39:24,080 --> 03:39:25,600
I THINK THE CORE ELEMENTS DO

6134
03:39:25,600 --> 03:39:29,040
NEED TO ALLOW IN A MANDATORY WAY

6135
03:39:29,040 --> 03:39:29,840
SHARING ACROSS THE MULTIPLE

6136
03:39:29,840 --> 03:39:30,960
SITES.

6137
03:39:30,960 --> 03:39:33,120
AND PERHAPS EVEN WITH SITES

6138
03:39:33,120 --> 03:39:34,360
OTHER THAN FORMAL CENTERS OF

6139
03:39:34,360 --> 03:39:34,680
EXCELLENCE.

6140
03:39:34,680 --> 03:39:36,440
DOES THAT ADDRESS YOUR QUESTION,

6141
03:39:36,440 --> 03:39:36,640
HANK?

6142
03:39:36,640 --> 03:39:37,840
>>IT DOES, THANK YOU.

6143
03:39:37,840 --> 03:39:39,040
THE ONE THING I WILL SAY IS

6144
03:39:39,040 --> 03:39:41,040
THAT, FOR EXAMPLE, IN THE

6145
03:39:41,040 --> 03:39:41,760
ALZHEIMER'S DISEASE RESEARCH

6146
03:39:41,760 --> 03:39:45,600
CENTER NETWORK, THERE'S A DESIRE

6147
03:39:45,600 --> 03:39:47,000
THAT THOSE PLACES ARE ALSO DOING

6148
03:39:47,000 --> 03:39:48,560
CLINICAL TRIALS, BUT TO ME, IT

6149
03:39:48,560 --> 03:39:50,640
SEEMS ALMOST -- BASED ON WHAT I

6150
03:39:50,640 --> 03:39:52,520
HEARD, THAT THE NETWORK NEEDS TO

6151
03:39:52,520 --> 03:39:54,320
BE DOING CLINICAL TRIALS.

6152
03:39:54,320 --> 03:39:55,200
AND I DON'T KNOW HOW YOU BAKE

6153
03:39:55,200 --> 03:39:55,560
THAT IN.

6154
03:39:55,560 --> 03:39:56,840
YOU TALKED ABOUT A GENETICS

6155
03:39:56,840 --> 03:39:57,440
CORE.

6156
03:39:57,440 --> 03:39:59,080
THERE PROBABLY NEEDS TO BE A

6157
03:39:59,080 --> 03:39:59,840
CLINICAL TRIALS CORE THAT'S PART

6158
03:39:59,840 --> 03:40:01,040
OF THESE CENTERS AS WELL.

6159
03:40:01,040 --> 03:40:02,840
MAYBE NOT ALL OF THEM, BUT MOST

6160
03:40:02,840 --> 03:40:03,040
OF THEM.

6161
03:40:03,040 --> 03:40:03,760
>>I AGREE WITH THAT.

6162
03:40:03,760 --> 03:40:05,520
AND I THINK THAT WAS PART OF THE

6163
03:40:05,520 --> 03:40:06,920
CONCEPT BEHIND THE CLINICAL

6164
03:40:06,920 --> 03:40:07,560
CORE, BUT I THINK YOU'RE EXACTLY

6165
03:40:07,560 --> 03:40:09,680
RIGHT.

6166
03:40:09,680 --> 03:40:18,360
KEN?

6167
03:40:18,360 --> 03:40:19,520
>>YOU'RE ON MUTE, KEN.

6168
03:40:19,520 --> 03:40:21,720
>>I THINK KEN IS HAVING
TROUBLE

6169
03:40:21,720 --> 03:40:22,160
UNMUTING.

6170
03:40:22,160 --> 03:40:23,360
WHY DON'T WE GO TO DAVID AND

6171
03:40:23,360 --> 03:40:26,200
WE'LL COME BACK TO YOU, KEN.

6172
03:40:26,200 --> 03:40:27,200
>>HI, EVERYBODY.

6173
03:40:27,200 --> 03:40:28,920
FIRST OF ALL, CONGRATULATIONS.

6174
03:40:28,920 --> 03:40:31,440
IT'S REALLY AN EXCITING SERIES

6175
03:40:31,440 --> 03:40:32,520
OF STUDIES THAT'S BEEN GOING ON.

6176
03:40:32,520 --> 03:40:36,160
WE ALSO SAW SOME TREMENDOUS WORK

6177
03:40:36,160 --> 03:40:37,560
ON A.L.S. PRESENTED YESTERDAY AT

6178
03:40:37,560 --> 03:40:39,240
THE INNOVATIVE TRIALS DESIGN FOR

6179
03:40:39,240 --> 03:40:41,480
TRAUMATIC BRAIN INJURY, A.L.S.

6180
03:40:41,480 --> 03:40:42,920
IS SOMETHING OF AN INSPIRATION

6181
03:40:42,920 --> 03:40:44,280
TO US IN THE FIELD OF TRAUMATIC

6182
03:40:44,280 --> 03:40:45,320
BRAIN INJURY.

6183
03:40:45,320 --> 03:40:46,200
ANOTHER INSPIRATION HAS BEEN THE

6184
03:40:46,200 --> 03:40:50,040
RECENT WORK ON BLOOD BRAIN

6185
03:40:50,040 --> 03:40:52,120
BARRIER TRAN CYTOSIS AND BLOOD

6186
03:40:52,120 --> 03:40:53,440
SPINAL CORD TRAN CYTOSIS.

6187
03:40:53,440 --> 03:40:57,360
SO IN ADDITION TO THE NEW TRIAL

6188
03:40:57,360 --> 03:41:00,000
MARKER TRIAL DESIGN CENTERS, I

6189
03:41:00,000 --> 03:41:01,520
REALLY THINK A KEY TECHNOLOGY

6190
03:41:01,520 --> 03:41:03,840
WITH GREAT POTENTIAL ADVANCE IN

6191
03:41:03,840 --> 03:41:04,960
A.L.S. TREATMENTS IN HUMANS

6192
03:41:04,960 --> 03:41:07,560
COULD BE THIS RECEPTOR MEDIATED

6193
03:41:07,560 --> 03:41:10,360
SHUTTLE TECHNOLOGY FOR

6194
03:41:10,360 --> 03:41:13,560
DELIVERING BIOLOGICAL MACRO

6195
03:41:13,560 --> 03:41:17,480
MOLECULES SUCH AS ANTIBODIES

6196
03:41:17,480 --> 03:41:20,960
ACROSS THE BLOOD BRAIN BARRIER,

6197
03:41:20,960 --> 03:41:23,840
THE WORK THAT WE SAW AT THE MOST

6198
03:41:23,840 --> 03:41:26,760
RECENT KEYSTONE DRUG DELIVERY TO

6199
03:41:26,760 --> 03:41:27,920
THE BRAIN KEYSTONE CONFERENCE

6200
03:41:27,920 --> 03:41:30,280
WAS REALLY REVOLUTIONARY,

6201
03:41:30,280 --> 03:41:31,920
THERE'S NOT MUCH WORK IN A.L.S.

6202
03:41:31,920 --> 03:41:34,800
AS OF YET, IT'S BEEN MOSTLY

6203
03:41:34,800 --> 03:41:35,760
ALZHEIMER'S DISEASE, BRAIN

6204
03:41:35,760 --> 03:41:37,880
CANCERS AND LYSOSOMAL STORAGE

6205
03:41:37,880 --> 03:41:39,160
DISEASING BUT I THINK IT HAS

6206
03:41:39,160 --> 03:41:39,800
TREMENDOUS POTENTIAL.

6207
03:41:39,800 --> 03:41:40,680
>>I AGREE.

6208
03:41:40,680 --> 03:41:42,560
I KNOW -- RITA, DO YOU WANT TO

6209
03:41:42,560 --> 03:41:42,960
COMMENT?

6210
03:41:42,960 --> 03:41:44,520
I FULLY AGREE.

6211
03:41:44,520 --> 03:41:46,800
>>NO, I ABSOLUTELY A.

6212
03:41:46,800 --> 03:41:48,040
THERE ARE AKNOW A COUPLE OF

6213
03:41:48,040 --> 03:41:48,880
GROUPS THAT STARTED WORKING IN

6214
03:41:48,880 --> 03:41:52,720
THIS FIELD AND I GREE THERE NEED

6215
03:41:52,720 --> 03:41:55,560
TO BE MORE EFFORT INTO REALLY

6216
03:41:55,560 --> 03:41:56,880
FIGURING THIS OUT AND HOW WE

6217
03:41:56,880 --> 03:41:57,520
TAKE ADVANTAGE OF THIS.

6218
03:41:57,520 --> 03:41:58,760
THANK YOU FOR POINTING THAT OUT.

6219
03:41:58,760 --> 03:42:00,160
>>KEN, ARE YOU ABLE TO --

6220
03:42:00,160 --> 03:42:01,360
>>SORRY ABOUT THAT.

6221
03:42:01,360 --> 03:42:02,560
I WAS HAVING SOME TECHNICAL

6222
03:42:02,560 --> 03:42:03,000
DIFFICULTIES.

6223
03:42:03,000 --> 03:42:05,320
SO I WAS LOOKING AT THE SORT OF

6224
03:42:05,320 --> 03:42:09,360
COMMENTS FROM A COUPLE OF OUR

6225
03:42:09,360 --> 03:42:13,840
COUNCILMEMBERS, AMY, BRANDON,

6226
03:42:13,840 --> 03:42:15,360
KRISTEN ABOUT THE GREAT EXTENT

6227
03:42:15,360 --> 03:42:16,360
AND DEGREE OF COLLABORATION

6228
03:42:16,360 --> 03:42:18,000
THAT'S GONE INTO THE STRATEGIC

6229
03:42:18,000 --> 03:42:18,680
APPROACH.

6230
03:42:18,680 --> 03:42:21,280
YOU KNOW, WHAT REALLY STUNNED

6231
03:42:21,280 --> 03:42:23,800
ME, AND WHAT I THINK MAKES THIS

6232
03:42:23,800 --> 03:42:27,200
VERY UNIQUE, AND PROBABLY WILL

6233
03:42:27,200 --> 03:42:29,400
LEAD TO A LOT OF SUCCESS IN THE

6234
03:42:29,400 --> 03:42:31,160
END, IS THAT, YOU KNOW, IN THE

6235
03:42:31,160 --> 03:42:31,800
PHARMACEUTICAL INDUSTRY, AND I

6236
03:42:31,800 --> 03:42:34,360
DON'T WANT TO TALK FOR ALL OF

6237
03:42:34,360 --> 03:42:35,840
PHARMACEUTICAL INDUSTRY, BUT I

6238
03:42:35,840 --> 03:42:39,680
FEEL THAT, YOU KNOW, I'M KIND OF

6239
03:42:39,680 --> 03:42:41,560
LIKE IN PART THE VOICE ON THE

6240
03:42:41,560 --> 03:42:42,560
COUNCIL HERE.

6241
03:42:42,560 --> 03:42:43,760
THERE'S A LOT OF EMPHASIS ON

6242
03:42:43,760 --> 03:42:46,240
PATIENT ENGAGEMENT.

6243
03:42:46,240 --> 03:42:48,640
AND EVERYONE IS DOING IT.

6244
03:42:48,640 --> 03:42:51,520
BUT WHAT I HEARD HERE GOES

6245
03:42:51,520 --> 03:42:53,040
BEYOND, YOU KNOW, MAKING SURE

6246
03:42:53,040 --> 03:42:55,680
YOU HAVE DIVERSE PATIENTS IN

6247
03:42:55,680 --> 03:42:56,880
YOUR CLINICAL TRIALS.

6248
03:42:56,880 --> 03:42:58,400
LIKE WE FOUND OUT WE STILL

6249
03:42:58,400 --> 03:43:00,400
DIDN'T DO IN THE COVID PANDEMIC,

6250
03:43:00,400 --> 03:43:02,520
OR EVEN HAVING PATIENTS

6251
03:43:02,520 --> 03:43:04,440
CONTRIBUTE TO YOUR CLINICAL

6252
03:43:04,440 --> 03:43:09,160
TRIAL PROTOCOL.

6253
03:43:09,160 --> 03:43:10,560
WHAT WE'RE HEARING HERE AND WHAT

6254
03:43:10,560 --> 03:43:11,880
WE'VE HEARD IS THAT THE

6255
03:43:11,880 --> 03:43:12,760
STRATEGIC INTENT AROUND THIS

6256
03:43:12,760 --> 03:43:14,040
DISEASE HAS BEEN DRIVEN BY THE

6257
03:43:14,040 --> 03:43:18,320
PATIENTS.

6258
03:43:18,320 --> 03:43:20,400
SO THERE ARE OBVIOUS CASES WHERE

6259
03:43:20,400 --> 03:43:24,000
LIKE HIGH PROFILE PATIENTS, LIKE

6260
03:43:24,000 --> 03:43:25,640
CHRISTOPHER REEVE AND SPINAL

6261
03:43:25,640 --> 03:43:28,360
CORD INJURY AND MICHAEL J. FOX

6262
03:43:28,360 --> 03:43:29,880
AND PARKINSON'S DISEASE, BUT

6263
03:43:29,880 --> 03:43:30,920
IT'S A COMPLETELY DIFFERENT

6264
03:43:30,920 --> 03:43:32,440
THING WHEN YOU'VE GOT REALLY

6265
03:43:32,440 --> 03:43:33,640
THOUGHTFUL, HIGH POWERED

6266
03:43:33,640 --> 03:43:35,520
INDIVIDUALS WHO ARE PATIENTS

6267
03:43:35,520 --> 03:43:37,440
THINKING AROUND THE STRATEGY OF

6268
03:43:37,440 --> 03:43:39,120
THE DISEASE AND HOW YOU GO

6269
03:43:39,120 --> 03:43:41,560
FORWARD IN THE R & D.

6270
03:43:41,560 --> 03:43:43,400
AND I THINK THAT THAT ALONE WILL

6271
03:43:43,400 --> 03:43:44,920
BRING PHARMA TO THE TABLE.

6272
03:43:44,920 --> 03:43:46,240
BECAUSE LET'S FACE IT, AND I

6273
03:43:46,240 --> 03:43:47,880
MADE THESE COMMENTS I THINK IN

6274
03:43:47,880 --> 03:43:49,320
THE LAST COUNCIL MEETING,

6275
03:43:49,320 --> 03:43:53,440
THERE'S NOT A LOT TRULY BIG

6276
03:43:53,440 --> 03:43:55,240
PHARMA IN THE A.L.S. SPACE.

6277
03:43:55,240 --> 03:43:57,280
RIGHT?

6278
03:43:57,280 --> 03:44:01,280
WE HAVE ESSENTIALLY WHAT, TWO

6279
03:44:01,280 --> 03:44:10,760
DRUGS, RILOTAC AND ADDARVON, AND

6280
03:44:10,760 --> 03:44:12,600
CLEARLY AAGREE WITH

6281
03:44:12,600 --> 03:44:13,280
DR. KOROSHETZ THAT IN ORDER FOR

6282
03:44:13,280 --> 03:44:15,040
THIS TO GO FORWARD, BIG PHARMA

6283
03:44:15,040 --> 03:44:16,560
HAS TO BE AT THE TABLE.

6284
03:44:16,560 --> 03:44:17,440
WHAT I'M SIGNALING TO YOU IS

6285
03:44:17,440 --> 03:44:18,440
THAT THE WAY THAT YOU'VE IMON

6286
03:44:18,440 --> 03:44:23,240
ABGONEABOUT DOING THIS, THE LEV-

6287
03:44:23,240 --> 03:44:25,160
THIS IS PATIENT ENGAGEMENT ON

6288
03:44:25,160 --> 03:44:25,840
STEROIDS.

6289
03:44:25,840 --> 03:44:26,840
THE LEVEL AT WHICH YOU'VE

6290
03:44:26,840 --> 03:44:27,920
BROUGHT THAT TO BEAR ON THIS

6291
03:44:27,920 --> 03:44:29,640
PROBLEM, I THINK IS A HUGE DRAW

6292
03:44:29,640 --> 03:44:32,080
FOR BIG PHARMA.

6293
03:44:32,080 --> 03:44:34,880
>>KEN, CAN I COMMENT ON
THAT?

6294
03:44:34,880 --> 03:44:38,320
DO YOU MIND?

6295
03:44:38,320 --> 03:44:41,040
NOT EVERY PHARMA AND BIOTECH

6296
03:44:41,040 --> 03:44:44,160
COMPANY IS ON BOARD.

6297
03:44:44,160 --> 03:44:45,400
MOST ARE.

6298
03:44:45,400 --> 03:44:46,080
THE GOOD ONES ARE.

6299
03:44:46,080 --> 03:44:49,360
BUT YOU WOULD BE SURPRISED HOW

6300
03:44:49,360 --> 03:44:52,840
MANY ARE NOT ON BOARD REGARDING

6301
03:44:52,840 --> 03:44:55,880
PATIENT ADVOCACY AND ADVISORY

6302
03:44:55,880 --> 03:44:56,240
GROUPS.

6303
03:44:56,240 --> 03:45:01,200
THERE ARE MANY THAT ARE NOT.

6304
03:45:01,200 --> 03:45:03,360
BUT IT IS GROWING, THEY DO SEE A

6305
03:45:03,360 --> 03:45:08,400
NEED, THEY DO SEE VALUE, AND WE

6306
03:45:08,400 --> 03:45:12,680
ARE STRIVING AS A COMMUNITY, AS

6307
03:45:12,680 --> 03:45:15,160
A GROUP OF A.L.S. EXPERIENCE

6308
03:45:15,160 --> 03:45:19,920
EXPERTS, WE'RE ALWAYS

6309
03:45:19,920 --> 03:45:20,640
QUESTIONING PHARMA AND BIOTECH

6310
03:45:20,640 --> 03:45:24,480
TO ENSURE WE HAVE A SEAT AT THE

6311
03:45:24,480 --> 03:45:24,960
TABLE.

6312
03:45:24,960 --> 03:45:28,760
WE'RE TRYING AS HARD AS WE CAN.

6313
03:45:28,760 --> 03:45:36,280
AND AS I SAID, I COMMEND NIH AND

6314
03:45:36,280 --> 03:45:37,760
NINDS FOR DOING THIS.

6315
03:45:37,760 --> 03:45:40,680
IT SETS A GREAT PRECEDENT AND

6316
03:45:40,680 --> 03:45:43,520
HIGH BAR FOR ALL COMPANIES TO

6317
03:45:43,520 --> 03:45:45,520
HAVE US INVOLVED IN THE PROCESS

6318
03:45:45,520 --> 03:45:49,360
FROM THE BEGINNING.

6319
03:45:49,360 --> 03:45:51,000
>>TOTALLY AGREE.

6320
03:45:51,000 --> 03:45:51,960
>>THAT'S RIGHT.

6321
03:45:51,960 --> 03:45:53,960
THIS MIGHT BE A GOOD PLACE TO

6322
03:45:53,960 --> 03:45:57,000
STOP, ALTHOUGH THIS IS JUST THE

6323
03:45:57,000 --> 03:45:57,800
BEGINNING OF THE PROCESS.

6324
03:45:57,800 --> 03:45:59,200
I FOUND THIS INCREDIBLY

6325
03:45:59,200 --> 03:46:01,480
INSPIRING, AND IT'S NOT JUST

6326
03:46:01,480 --> 03:46:04,440
INSPIRING FOR A.L.S., WHICH IT'S

6327
03:46:04,440 --> 03:46:05,640
OBVIOUSLY INSPIRING FOR, BUT FOR

6328
03:46:05,640 --> 03:46:07,200
MANY OF THE OTHER DISEASES THAT

6329
03:46:07,200 --> 03:46:09,840
WE'RE RESPONSIBLE FOR, THIS

6330
03:46:09,840 --> 03:46:11,240
APPROACH BEING TAKEN HERE.

6331
03:46:11,240 --> 03:46:13,000
SO WE'LL BE HEARING MORE.

6332
03:46:13,000 --> 03:46:14,480
THANKS A MILLION TO ALL OF YOU

6333
03:46:14,480 --> 03:46:17,240
WHWHO PARTICIPATED IN THIS.

6334
03:46:17,240 --> 03:46:19,240
IT'S REALLY BEEN GREAT.

6335
03:46:19,240 --> 03:46:19,440
OKAY.

6336
03:46:19,440 --> 03:46:23,400
IT'S HARD TO SHIFT GEARS NOW.

6337
03:46:23,400 --> 03:46:24,800
BUT I'M GOING TO GO ON TO THE

6338
03:46:24,800 --> 03:46:26,400
LAST SECTION OF THE MEETING,

6339
03:46:26,400 --> 03:46:27,240
WHICH HAS TO DO WITH CONCEPT

6340
03:46:27,240 --> 03:46:27,560
CLEARANCE.

6341
03:46:27,560 --> 03:46:28,960
THERE'S ACTUALLY AN A.L.S.

6342
03:46:28,960 --> 03:46:33,880
CONCEPT INCLUDED IN THAT.

6343
03:46:33,880 --> 03:46:37,520
AND BE BEFORE WE LAUNCH ANY NEW

6344
03:46:37,520 --> 03:46:38,760
INITIATIVE AT NINDS, WE ASK FOR

6345
03:46:38,760 --> 03:46:40,040
CLEARANCE FROM COUNCIL.

6346
03:46:40,040 --> 03:46:40,920
WE'VE BEEN DOING THIS FOR A

6347
03:46:40,920 --> 03:46:42,440
LONG, LONG TIME.

6348
03:46:42,440 --> 03:46:45,680
BUT IT'S ACTUALLY NOW REQUIRED

6349
03:46:45,680 --> 03:46:48,280
BY NIH.

6350
03:46:48,280 --> 03:46:50,000
SO MOST OF THE INITIATIVES THAT

6351
03:46:50,000 --> 03:46:51,440
WE NEED CLEARANCE FOR ARE

6352
03:46:51,440 --> 03:46:52,640
ACTUALLY REISSUES THAT WE'RE NOT

6353
03:46:52,640 --> 03:46:53,720
GOING TO TALK ABOUT.

6354
03:46:53,720 --> 03:46:54,600
I'M GOING TO SHOW A SLIDE WITH

6355
03:46:54,600 --> 03:46:57,040
THEM AND IF YOU HAVE QUESTIONS,

6356
03:46:57,040 --> 03:46:58,600
WE CAN TALK ABOUT THEM, BUT

6357
03:46:58,600 --> 03:47:00,840
THERE ARE A FEW THAT H WE ARE

6358
03:47:00,840 --> 03:47:01,960
GOING TO DISCUSS.

6359
03:47:01,960 --> 03:47:02,960
THE ONE WE'LL SPEND THE MOST

6360
03:47:02,960 --> 03:47:04,600
TIME IS THE VERY FIRST ONE,

6361
03:47:04,600 --> 03:47:06,800
WHICH IS -- IT'S A PROPOSED

6362
03:47:06,800 --> 03:47:09,080
PROGRAM, AND BY THE WAY, THIS

6363
03:47:09,080 --> 03:47:11,040
HAS IMPLICATIONS FOR ALL THE

6364
03:47:11,040 --> 03:47:12,680
DISEASES THAT WE COVER, AS WELL

6365
03:47:12,680 --> 03:47:13,680
AS BASIC RESEARCH.

6366
03:47:13,680 --> 03:47:15,600
SO THE FIRST IS THIS PROPOSED

6367
03:47:15,600 --> 03:47:17,480
PROGRAM TO ENHANCE SCIENTIFIC

6368
03:47:17,480 --> 03:47:19,280
RIGOR IN NEUROSCIENCE

6369
03:47:19,280 --> 03:47:21,600
DEPARTMENTS ACROSS THE COUNTRY.

6370
03:47:21,600 --> 03:47:22,280
VERY INNOVATIVE, INTERESTING

6371
03:47:22,280 --> 03:47:25,120
PROGRAM.

6372
03:47:25,120 --> 03:47:26,280
DEVON, WE BLOCKED OFF SOME TIME

6373
03:47:26,280 --> 03:47:27,840
FOR THIS ONE MORE THAN WE

6374
03:47:27,840 --> 03:47:29,040
USUALLY SPEND BECAUSE IT'S SO

6375
03:47:29,040 --> 03:47:30,320
NEW AND WE REALLY DO WANT TO

6376
03:47:30,320 --> 03:47:31,320
DISCUSS IT.

6377
03:47:31,320 --> 03:47:33,840
THIS IS NOT JUST GOING TO BE A

6378
03:47:33,840 --> 03:47:35,440
PRESENTATION.

6379
03:47:35,440 --> 03:47:36,560
DEVON CRAWFORD, WHO'S IN OUR

6380
03:47:36,560 --> 03:47:37,600
NINDS OFFICE OF RESEARCH

6381
03:47:37,600 --> 03:47:45,440
QUALITY, WHICH IS HEADED BY

6382
03:47:45,440 --> 03:47:46,880
SHI -- IS DEVON THERE?

6383
03:47:46,880 --> 03:47:49,920
I'M LOOKING FOR HER.

6384
03:47:49,920 --> 03:47:52,040
I SEE YOUR SLIDES, DEVON.

6385
03:47:52,040 --> 03:47:52,760
I'M NOT SURE I SEE YOU.

6386
03:47:52,760 --> 03:47:53,480
>>OKAY.

6387
03:47:53,480 --> 03:47:54,640
HOPEFULLY YOU CAN SEE ME NOW.

6388
03:47:54,640 --> 03:47:56,960
>>THERE YOU ARE.

6389
03:47:56,960 --> 03:47:57,160
OKAY.

6390
03:47:57,160 --> 03:47:57,520
TAKE IT AWAY.

6391
03:47:57,520 --> 03:47:58,320
>>ALL RIGHT.

6392
03:47:58,320 --> 03:47:59,920
LET ME JUST MOVE THIS.

6393
03:47:59,920 --> 03:48:08,360
OF ALL RIGHT.

6394
03:48:08,360 --> 03:48:09,560
>>THANK YOU, BOB.

6395
03:48:09,560 --> 03:48:10,680
HOPEFULLY EVERYBODY IS HANGING

6396
03:48:10,680 --> 03:48:12,520
IN THERE THIS AFTERNOON.

6397
03:48:12,520 --> 03:48:14,640
I'M HAPPY TO BE HERE TODAY

6398
03:48:14,640 --> 03:48:17,280
SPEAKING ON BEHALF OF THE ENTIER

6399
03:48:17,280 --> 03:48:18,280
NINDS OFFICE OF RESEARCH QUALITY

6400
03:48:18,280 --> 03:48:19,440
IN ORDER TO SOLICIT YOUR

6401
03:48:19,440 --> 03:48:22,080
FEEDBACK ON THIS IDEA FOR A NEW

6402
03:48:22,080 --> 03:48:22,840
PROGRAM, AND THIS IS A PROPOSAL

6403
03:48:22,840 --> 03:48:24,960
FOR A NEW NINDS FUNDING

6404
03:48:24,960 --> 03:48:26,800
OPPORTUNITY TO CREATE

6405
03:48:26,800 --> 03:48:28,560
SUSTAINABLE TRANSFORMATION OF

6406
03:48:28,560 --> 03:48:30,080
INSTITUTIONAL RESEARCH RIGOR IN

6407
03:48:30,080 --> 03:48:31,200
THE NEUROSCIENCES.

6408
03:48:31,200 --> 03:48:33,280
AND WITH THIS, WE HOPE TO

6409
03:48:33,280 --> 03:48:36,040
STIMULATE A STRONGER CULTURE OF

6410
03:48:36,040 --> 03:48:37,440
PERFORMING AND REWARDING HIGH

6411
03:48:37,440 --> 03:48:40,080
QUALITY RESEARCH IN A WAY THAT

6412
03:48:40,080 --> 03:48:41,160
WILL COMPLEMENT OUR OTHER

6413
03:48:41,160 --> 03:48:42,520
EFFORTS IN THIS SPACE.

6414
03:48:42,520 --> 03:48:45,560
SO WE LOOK FORWARD TO YOUR

6415
03:48:45,560 --> 03:48:46,440
FEEDBACK.

6416
03:48:46,440 --> 03:48:48,600
SO WHY IS EXPERIMENTAL RIGOR OUR

6417
03:48:48,600 --> 03:48:48,960
FOCUS?

6418
03:48:48,960 --> 03:48:52,160
AS OUR OWN DIRECTOR DR. WALTER

6419
03:48:52,160 --> 03:48:54,000
KOROSHETZ WROTE IN HIS 2021

6420
03:48:54,000 --> 03:48:56,400
DIRECTOR'S MESSAGE, GOOD SCIENCE

6421
03:48:56,400 --> 03:48:57,680
IS RIGOROUS SCIENCE.

6422
03:48:57,680 --> 03:49:01,000
SO IN OTHER WORDS, HIGH QUALITY

6423
03:49:01,000 --> 03:49:02,080
RIGOROUS RESEARCH IS

6424
03:49:02,080 --> 03:49:06,360
FOUNDATIONAL TO THE SCIENTIFIC

6425
03:49:06,360 --> 03:49:07,000
ENTERPRISE.

6426
03:49:07,000 --> 03:49:09,360
IN THE LATEST STRATEGIC PLAN AS

6427
03:49:09,360 --> 03:49:11,320
CROSS-CUTTING STRATEGIES,

6428
03:49:11,320 --> 03:49:12,320
INTEGRATED ACROSS INSTITUTE

6429
03:49:12,320 --> 03:49:13,000
ACTIVITIES.

6430
03:49:13,000 --> 03:49:14,960
AND IN THIS PLAN, NINDS ACTUALLY

6431
03:49:14,960 --> 03:49:17,240
ACKNOWLEDGED THAT RESEARCH IS

6432
03:49:17,240 --> 03:49:18,240
OFTEN FLAWED OR NOT

6433
03:49:18,240 --> 03:49:19,640
TRANSPARENTLY REPORTED, WHICH

6434
03:49:19,640 --> 03:49:22,960
CAN UNDERMINE SCIENTIFIC

6435
03:49:22,960 --> 03:49:25,520
ADVANCEMENTMENT.

6436
03:49:25,520 --> 03:49:26,600
ADVANCEMENT.

6437
03:49:26,600 --> 03:49:28,000
FOR EXAMPLE, FLAWS IN ACADEMIC

6438
03:49:28,000 --> 03:49:32,680
PRE-CLINICAL STUDIES, THEY

6439
03:49:32,680 --> 03:49:34,160
SHOWED THAT THEY COULD NOT

6440
03:49:34,160 --> 03:49:37,560
REPLICATE ABOUT 65% OF EARLY

6441
03:49:37,560 --> 03:49:38,440
TARGET IDENTIFICATION AND

6442
03:49:38,440 --> 03:49:41,320
VALIDATION PROJECTS THAT THEY

6443
03:49:41,320 --> 03:49:41,720
PERFORMED IN HOUSE.

6444
03:49:41,720 --> 03:49:43,360
AND THIS ACTUALLY RAISED AN

6445
03:49:43,360 --> 03:49:45,560
ALARM AND OTHER GROUPS FOUND

6446
03:49:45,560 --> 03:49:48,200
SIMILAR ISSUES WITH PRE-CLINICAL

6447
03:49:48,200 --> 03:49:49,320
REPRODUCIBILITY IN SUBSEQUENT

6448
03:49:49,320 --> 03:49:49,600
STUDIES.

6449
03:49:49,600 --> 03:49:51,960
AND THIS MAY NOT SEEM LIKE A

6450
03:49:51,960 --> 03:49:54,480
MAJOR ISSUE SINCE WE WOULDN'T

6451
03:49:54,480 --> 03:49:56,200
EXPECT EVERY NEW FINDING TO BE

6452
03:49:56,200 --> 03:49:58,320
PERFECTLY REPRODUCIBLE, BUT IT

6453
03:49:58,320 --> 03:50:00,840
CAN HAVE NEGATIVE CONSEQUENCES

6454
03:50:00,840 --> 03:50:02,840
FOR HUMAN HEALTH AND WELL-BEING,

6455
03:50:02,840 --> 03:50:05,760
ESPECIALLY IF MUCH OF THE

6456
03:50:05,760 --> 03:50:09,280
IRREPRODUCIBILITY IS AVOIDABLE.

6457
03:50:09,280 --> 03:50:11,360
AND THIS ISSUE IS HIGHLIGHTED BY

6458
03:50:11,360 --> 03:50:13,320
STUDIES ON THE SOD1 MOUSE MODEL

6459
03:50:13,320 --> 03:50:14,920
OF A.L.S., SO THIS IS PROBABLY

6460
03:50:14,920 --> 03:50:16,680
VERY RELEVANT TO THE DISCUSSION

6461
03:50:16,680 --> 03:50:17,400
WE JUST HAD.

6462
03:50:17,400 --> 03:50:19,360
IN THE EARLY 2000s, MANY DRUGS

6463
03:50:19,360 --> 03:50:21,160
HAD BEEN FOUND TO IMPROVE

6464
03:50:21,160 --> 03:50:22,720
SURVIVAL IN THIS MOUSE MODEL

6465
03:50:22,720 --> 03:50:23,920
BRINGING HOPE OF TREATMENTS TO

6466
03:50:23,920 --> 03:50:25,000
PEOPLE WITH ALZHEIMER'S.

6467
03:50:25,000 --> 03:50:27,440
AND YOU CAN SEE THE MEAN

6468
03:50:27,440 --> 03:50:28,520
SURVIVAL RATE IN THESE MICE FOR

6469
03:50:28,520 --> 03:50:31,480
EACH OF THESE DRUGS IN THESE

6470
03:50:31,480 --> 03:50:33,320
LIGHT BLUE BARS THAT GO OFF TO

6471
03:50:33,320 --> 03:50:33,600
THE RIGHT.

6472
03:50:33,600 --> 03:50:34,680
HOWEVER, ALMOST EVERY SINGLE ONE

6473
03:50:34,680 --> 03:50:36,120
OF THESE DRUGS FAILED COMPLETELY

6474
03:50:36,120 --> 03:50:38,680
IN EXPENSIVE, TIME-CONSUMING

6475
03:50:38,680 --> 03:50:39,720
HUMAN CLINICAL TRIALS, BUT AFTER

6476
03:50:39,720 --> 03:50:41,480
THESE FAILURES, THE A.L.S.

6477
03:50:41,480 --> 03:50:42,920
THERAPY DEVELOPMENT INSTITUTE

6478
03:50:42,920 --> 03:50:45,120
ACTUALLY REPEATED THE

6479
03:50:45,120 --> 03:50:45,880
PRE-CLINICAL WORK AND FOUND THAT

6480
03:50:45,880 --> 03:50:48,000
EACH OF THESE DRUGS DID NOT

6481
03:50:48,000 --> 03:50:49,040
ACTUALLY IMPROVE SURVIVAL IN

6482
03:50:49,040 --> 03:50:50,600
MICE AND YOU CAN SEE THE MEAN

6483
03:50:50,600 --> 03:50:51,560
SURVIVAL THAT THEY FOUND IN THE

6484
03:50:51,560 --> 03:50:53,760
DARK BARS.

6485
03:50:53,760 --> 03:50:56,600
SO WHAT WAS DIFFERENT THIS TIME

6486
03:50:56,600 --> 03:50:57,840
AROUND?

6487
03:50:57,840 --> 03:50:58,520
WELL, THE NEW EXPERIMENTS THEY

6488
03:50:58,520 --> 03:50:59,600
PERFORMED HAD BLINDING OF

6489
03:50:59,600 --> 03:51:00,600
INVESTIGATORS.

6490
03:51:00,600 --> 03:51:01,800
THEY RANDOMIZED MICE TO

6491
03:51:01,800 --> 03:51:02,680
TREATMENT GROUP.

6492
03:51:02,680 --> 03:51:04,000
THEY HAD SUFFICIENT SAMPLE SIZE

6493
03:51:04,000 --> 03:51:05,560
THAT THEY CHOSE IN ADVANCE.

6494
03:51:05,560 --> 03:51:08,840
THEY MATCHED FOR SEX AND LITTER.

6495
03:51:08,840 --> 03:51:10,200
THEY PREDEFINED THEIR INCLUSION

6496
03:51:10,200 --> 03:51:12,040
AND EXCLUSION CRITERIA TO REDUCE

6497
03:51:12,040 --> 03:51:13,600
CONFOUNDING FACTORS AND THEY

6498
03:51:13,600 --> 03:51:14,480
TRANSPARENTLY REPORTED THAT THEY

6499
03:51:14,480 --> 03:51:17,080
DID EACH OF THESE ITEMS.

6500
03:51:17,080 --> 03:51:18,720
AND SO IN SHORT, WHEN THESE

6501
03:51:18,720 --> 03:51:20,080
MOUSE STUDIES WERE PERFORMED

6502
03:51:20,080 --> 03:51:22,360
MORE RIGOROUSLY, THEY BETTER

6503
03:51:22,360 --> 03:51:24,880
MATCHED THE RESULTS SEEN IN

6504
03:51:24,880 --> 03:51:25,960
CLINICAL TRIAL.

6505
03:51:25,960 --> 03:51:29,440
SO I OFTEN IMAGINE HOW MUCH

6506
03:51:29,440 --> 03:51:30,280
TIME, MONEY AND PATIENT RISK

6507
03:51:30,280 --> 03:51:33,200
COULD HAVE BEEN AVOIDED IF THE

6508
03:51:33,200 --> 03:51:34,400
ORIGINAL ANIMAL STUDIES HAD JUST

6509
03:51:34,400 --> 03:51:35,920
BEEN PERFORMED MORE RIGOROUSLY.

6510
03:51:35,920 --> 03:51:39,360
NOW, THE QUESTION IS WHY ARE

6511
03:51:39,360 --> 03:51:41,040
PRE-CLINICAL STUDIES OFTEN NOT

6512
03:51:41,040 --> 03:51:42,720
AS RIGOROUS OR AS TRANSPARENT AS

6513
03:51:42,720 --> 03:51:43,480
THEY COULD BE?

6514
03:51:43,480 --> 03:51:46,560
AND I DON'T ENTEARLY BLAME

6515
03:51:46,560 --> 03:51:47,880
SCIENTISTS BECAUSE THEY'RE NOT

6516
03:51:47,880 --> 03:51:49,080
PERFORMING THE WORK IN A VACUUM.

6517
03:51:49,080 --> 03:51:50,760
THEY'RE UNDER VARIOUS PRESSURES.

6518
03:51:50,760 --> 03:51:52,720
THERE ARE PROFESSIONAL SOCIETIES

6519
03:51:52,720 --> 03:51:53,960
THAT DEVELOP FIELD-SPECIFIC

6520
03:51:53,960 --> 03:51:57,000
STANDARDS AND CAREER DEVELOPMENT

6521
03:51:57,000 --> 03:52:01,200
EXPECTATIONS FOR SCIENTIST.

6522
03:52:01,200 --> 03:52:02,320
 SCIENTISTS.

6523
03:52:02,320 --> 03:52:03,480
JOURNALS OFTEN PIT SCIENTISTS

6524
03:52:03,480 --> 03:52:05,000
AGAINST EACH OTHER TO TELL THE

6525
03:52:05,000 --> 03:52:07,280
FLASHIEST AND MOST EXCITING

6526
03:52:07,280 --> 03:52:08,440
STORY POSSIBLE IN ORDER TO EVEN

6527
03:52:08,440 --> 03:52:09,200
GET PUBLISHED.

6528
03:52:09,200 --> 03:52:11,200
YOU HAVE FUNDERS AND PEER

6529
03:52:11,200 --> 03:52:12,960
REVIEWERS THERE THAT OFTEN TAKE

6530
03:52:12,960 --> 03:52:14,600
PUBLICATION PRODUCTIVITY INTO

6531
03:52:14,600 --> 03:52:15,840
ACCOUNT WHEN EVEN CONSIDERING

6532
03:52:15,840 --> 03:52:18,280
THAT INVESTIGATOR'S EXPERTISE

6533
03:52:18,280 --> 03:52:20,520
BUT THEN ON TOP OF IT ALL,

6534
03:52:20,520 --> 03:52:21,680
INSTITUTIONAL PROMOTION AND

6535
03:52:21,680 --> 03:52:23,880
TENURE COMMITTEES RELY HEAVILY

6536
03:52:23,880 --> 03:52:24,840
ON PUBLICATION RECORD AND

6537
03:52:24,840 --> 03:52:30,640
FUNDING HISTORY BH DECIDING WHEG

6538
03:52:30,640 --> 03:52:33,560
ABOUT CAREER ADVANCEMENT.

6539
03:52:33,560 --> 03:52:35,880
CAREFUL SCIENCE CAN BE

6540
03:52:35,880 --> 03:52:36,440
MISCONSTRUED AS TOO SLOW OR

6541
03:52:36,440 --> 03:52:37,760
BORING TO GARNER THE FLASHY

6542
03:52:37,760 --> 03:52:39,880
PUBLICATIONS AND THE ABUNDANT

6543
03:52:39,880 --> 03:52:41,200
GRANT FUNDING EVEN THOUGH IT MAY

6544
03:52:41,200 --> 03:52:42,840
BE MORE LIKELY TO BE

6545
03:52:42,840 --> 03:52:43,480
SCIENTIFICALLY VALID.

6546
03:52:43,480 --> 03:52:45,600
AND SO ALL OF THESE PARTIES HAVE

6547
03:52:45,600 --> 03:52:48,240
A RESPONSIBILITY FOR FOSTERING A

6548
03:52:48,240 --> 03:52:51,440
CULTURE THAT ACTUALLY

6549
03:52:51,440 --> 03:52:52,280
INCENTIVIZES RIGOR AND

6550
03:52:52,280 --> 03:52:53,600
TRANSPARENCY AND ALL OF THEM

6551
03:52:53,600 --> 03:52:54,640
NEED TO ADAPT IF WE WANT TO SEE

6552
03:52:54,640 --> 03:52:58,440
A CHANGE IN THAT CULTURE.

6553
03:52:58,440 --> 03:53:00,320
FOR THIS REASON, NINDS HAS

6554
03:53:00,320 --> 03:53:01,200
ALREADY STARTED TAKING AN ACTIVE

6555
03:53:01,200 --> 03:53:04,360
ROLE IN TRYING TO CHANGE THE

6556
03:53:04,360 --> 03:53:06,800
CULTURE OF SCIENCE BY

6557
03:53:06,800 --> 03:53:07,360
INFLUENCING EACH OF THESE

6558
03:53:07,360 --> 03:53:08,560
CONTRIBUTORS TO THE ECOSYSTEM.

6559
03:53:08,560 --> 03:53:11,800
FOR EXAMPLE, FOR PUBLISHERS, WE

6560
03:53:11,800 --> 03:53:13,280
WORK TO INCREASE TRANSPARENCY BY

6561
03:53:13,280 --> 03:53:14,720
DEFINING A MINIMAL SET OF ITEMS

6562
03:53:14,720 --> 03:53:16,400
TO REPORT FOR EVERY STUDY OFTEN

6563
03:53:16,400 --> 03:53:19,440
REFERRED TO AS THE LANDIS

6564
03:53:19,440 --> 03:53:20,560
4 AFTER A WORKSHOP SUMMARY THAT

6565
03:53:20,560 --> 03:53:23,080
WE PUBLISHED.

6566
03:53:23,080 --> 03:53:27,480
WE ALSO BROUGHT A PROPOSAL TO

6567
03:53:27,480 --> 03:53:29,800
LAST COUNCIL FOR REDUCING

6568
03:53:29,800 --> 03:53:31,320
PUBLICATION BIAS AGAINST NO

6569
03:53:31,320 --> 03:53:32,240
RESULTS THROUGH NIH

6570
03:53:32,240 --> 03:53:34,400
INFRASTRUCTURE AND INCENTIVE AS

6571
03:53:34,400 --> 03:53:35,080
A FUNDER.

6572
03:53:35,080 --> 03:53:37,600
YOU MIGHT ALREADY BE AWARE OF

6573
03:53:37,600 --> 03:53:39,680
THE CURRENT NIH-WIDE GRANT

6574
03:53:39,680 --> 03:53:42,960
REVIEW CRITERIA THAT INCORPORATE

6575
03:53:42,960 --> 03:53:44,600
FOUR AREAS OF FOCUS RELATED TO

6576
03:53:44,600 --> 03:53:45,520
RIGOR BUT YOU MIGHT NOT BE AWARE

6577
03:53:45,520 --> 03:53:47,680
OF SOME OF OUR LOCAL ACTIVITIES

6578
03:53:47,680 --> 03:53:49,120
HERE AT NINDS.

6579
03:53:49,120 --> 03:53:51,040
WE HAVE PUBLISHED GUIDANCE ON

6580
03:53:51,040 --> 03:53:52,120
OUR WEBSITE ABOUT RIGOR ELEMENTS

6581
03:53:52,120 --> 03:53:53,560
TO CONSIDER WHEN WRITING NIH

6582
03:53:53,560 --> 03:53:54,120
GRANT APPLICATIONS.

6583
03:53:54,120 --> 03:53:56,040
IN THE LAST YEAR WE'VE ALSO MADE

6584
03:53:56,040 --> 03:53:57,040
A CONSCIOUS EFFORT TO INCREASE

6585
03:53:57,040 --> 03:54:00,040
ATTENTION TO RIGOR AND

6586
03:54:00,040 --> 03:54:01,240
TRANSPARENCY IN FUNDING

6587
03:54:01,240 --> 03:54:02,200
OPPORTUNITY ANNOUNCEMENTS,

6588
03:54:02,200 --> 03:54:04,080
THAT'S INCLUDING THE FOA-SMEF

6589
03:54:04,080 --> 03:54:05,520
REVIEW CRITERIA, AND WE'VE ALSO

6590
03:54:05,520 --> 03:54:06,960
MADE IT CLEAR ON OUR WEBSITE

6591
03:54:06,960 --> 03:54:08,840
THAT WE CONSIDER AN

6592
03:54:08,840 --> 03:54:09,800
INVESTIGATOR'S RIGOR AND

6593
03:54:09,800 --> 03:54:10,920
TRANSPARENCY WHEN DECIDING

6594
03:54:10,920 --> 03:54:12,360
WHETHER OR NOT TO FUND A GRANT

6595
03:54:12,360 --> 03:54:13,120
THROUGH SELECT PAY.

6596
03:54:13,120 --> 03:54:15,320
SO THAT'S YOUR HIGH PROGRAM

6597
03:54:15,320 --> 03:54:16,760
PRIORITY OR BRIDGE AWARDS.

6598
03:54:16,760 --> 03:54:19,160
WE'VE ALSO WORKED WITH

6599
03:54:19,160 --> 03:54:20,800
SCIENTIFIC SOCIETIES TO CRAFT

6600
03:54:20,800 --> 03:54:22,120
GUIDANCE FOR IMPROVING

6601
03:54:22,120 --> 03:54:23,200
TRANSPARENCY IN CONFERENCE TALKS

6602
03:54:23,200 --> 03:54:25,360
IN POSTER PRESENTATIONS, AND ON

6603
03:54:25,360 --> 03:54:26,840
THE INDIVIDUAL LEVEL, WE ALSO

6604
03:54:26,840 --> 03:54:28,000
PARTICIPATE IN COMMUNITY

6605
03:54:28,000 --> 03:54:29,240
ENGAGEMENT THROUGH TALKS, SOCIAL

6606
03:54:29,240 --> 03:54:30,480
MEDIA, WORKSHOPS.

6607
03:54:30,480 --> 03:54:31,680
WE HAVE ONLINE RESOURCES.

6608
03:54:31,680 --> 03:54:33,080
YOU MAY HAVE ALSO HEARD AT A

6609
03:54:33,080 --> 03:54:34,000
PREVIOUS COUNCIL MEETING THAT WE

6610
03:54:34,000 --> 03:54:36,560
ARE DEVELOPING A LARGE ONLINE

6611
03:54:36,560 --> 03:54:37,960
EDUCATIONAL RESOURCE TO IMPROVE

6612
03:54:37,960 --> 03:54:39,200
TRAINING IN THE PRINCIPLES OF

6613
03:54:39,200 --> 03:54:40,960
RIGOROUS RESEARCH, AND WE ARE

6614
03:54:40,960 --> 03:54:43,320
ALSO PROPOSING A NEW CHALLENGE

6615
03:54:43,320 --> 03:54:43,600
PRIZE.

6616
03:54:43,600 --> 03:54:45,560
THE PURPOSE OF WHICH IS TO

6617
03:54:45,560 --> 03:54:48,120
IDENTIFY AND REWARD INDIVIDUALS

6618
03:54:48,120 --> 03:54:51,520
OR SMALL GROUPS FOR INCREASING

6619
03:54:51,520 --> 03:54:52,720
ATTENTION, RIGOR AND

6620
03:54:52,720 --> 03:54:53,720
TRANSPARENCY ABOVE AND BEYOND

6621
03:54:53,720 --> 03:54:55,200
THEIR NORMAL JOB DUTIES.

6622
03:54:55,200 --> 03:54:57,160
HOWEVER, YOU MIGHT NOTICE ONE

6623
03:54:57,160 --> 03:54:58,880
CULTURAL KEYSTONE MISSING FROM

6624
03:54:58,880 --> 03:54:59,800
THIS LIST AND THAT'S

6625
03:54:59,800 --> 03:55:00,600
INSTITUTIONS.

6626
03:55:00,600 --> 03:55:02,560
NOW WHAT DOES NINDS AFFECTING

6627
03:55:02,560 --> 03:55:03,560
LOCAL INSTITUTIONAL CULTURE?

6628
03:55:03,560 --> 03:55:05,440
WELL, NOT THAT MUCH.

6629
03:55:05,440 --> 03:55:07,120
NOW, NIH POLICIES, OF COURSE,

6630
03:55:07,120 --> 03:55:09,200
WILL GUIDE INSTITUTIONAL

6631
03:55:09,200 --> 03:55:10,400
BEHAVIOR THROUGH MANDATES LIKE

6632
03:55:10,400 --> 03:55:13,320
THE DATA SHARING OR TRAINING

6633
03:55:13,320 --> 03:55:14,600
REQUIREMENTS, BUT NINDS HAS NOT

6634
03:55:14,600 --> 03:55:17,680
YET TRIED TO DIRECTLY

6635
03:55:17,680 --> 03:55:18,800
INCENTIVIZE INSTITUTIONS TO

6636
03:55:18,800 --> 03:55:21,240
PROMOTE AND ENHANCE RIGOR VIA

6637
03:55:21,240 --> 03:55:24,960
THE LOCAL RESEARCH CULTURE.

6638
03:55:24,960 --> 03:55:26,240
SO FOR THIS REASON, WE ARE

6639
03:55:26,240 --> 03:55:28,400
PROPOSING THE NINDS SUSTAINABLE

6640
03:55:28,400 --> 03:55:29,640
TRANSFORMATION OF INSTITUTIONAL

6641
03:55:29,640 --> 03:55:32,400
RESEARCH RIGOR, OR STIRR,

6642
03:55:32,400 --> 03:55:33,720
PROGRAM, AND THIS INITIATIVE

6643
03:55:33,720 --> 03:55:35,400
WILL SUPPORT THE ESTABLISHMENT

6644
03:55:35,400 --> 03:55:36,240
OF PROGRAMS TO ENHANCE RESEARCH

6645
03:55:36,240 --> 03:55:38,480
RIGOR AND TRANSPARENCY PRACTICES

6646
03:55:38,480 --> 03:55:40,400
WITHIN ACADEMIC AND RESEARCH

6647
03:55:40,400 --> 03:55:42,680
INSTITUTIONS IN ORDER TO PROMOTE

6648
03:55:42,680 --> 03:55:44,520
A CULTURE OF HIGH QUALITY

6649
03:55:44,520 --> 03:55:47,440
NEUROSCIENCE RESEARCH.

6650
03:55:47,440 --> 03:55:48,920
SO THIS FUNDING OPPORTUNITY IS

6651
03:55:48,920 --> 03:55:50,920
MEANT TO SUPPORT AN INDIVIDUAL

6652
03:55:50,920 --> 03:55:53,400
DEPARTMENT, OFFICE, OR OTHER

6653
03:55:53,400 --> 03:55:54,480
INTRA-INSTITUTIONAL ENTITY.

6654
03:55:54,480 --> 03:55:57,400
SO THIS IS NOT THE LEVEL OF THE

6655
03:55:57,400 --> 03:55:58,800
ENTIRE INSTITUTION BUT RATHER AT

6656
03:55:58,800 --> 03:56:02,920
A MORE LOCAL LEVEL WITHIN THE

6657
03:56:02,920 --> 03:56:03,200
INSTITUTION.

6658
03:56:03,200 --> 03:56:04,360
AND SINCE WE'RE NINDS, WE WILL

6659
03:56:04,360 --> 03:56:05,880
ALSO FOCUS ON ENTITYS THAT HAVE

6660
03:56:05,880 --> 03:56:07,920
A CRITICAL MASS OF

6661
03:56:07,920 --> 03:56:08,440
NEUROSCIENTISTS THAT WILL

6662
03:56:08,440 --> 03:56:10,520
BENEFIT FROM THE PROGRAM, SO FOR

6663
03:56:10,520 --> 03:56:11,720
EXAMPLE, YOU KNOW, AT LEAST SOME

6664
03:56:11,720 --> 03:56:13,880
OF THE LABS WITHIN A DEPARTMENT

6665
03:56:13,880 --> 03:56:15,400
WOULD NEED TO BE PERFORMING

6666
03:56:15,400 --> 03:56:16,680
RESEARCH IN THE NINDS MISSION

6667
03:56:16,680 --> 03:56:18,040
SPACE FOR THAT DEPARTMENT TO BE

6668
03:56:18,040 --> 03:56:20,920
ELIGIBLE TO APPLY.

6669
03:56:20,920 --> 03:56:22,120
AND FINALLY WE ARE PROPOSING A

6670
03:56:22,120 --> 03:56:23,200
THREE-YEAR LIMIT TO THE AWARD

6671
03:56:23,200 --> 03:56:24,320
BECAUSE THIS SHOULD BE

6672
03:56:24,320 --> 03:56:25,360
KICK-STARTING A NEW PROGRAM

6673
03:56:25,360 --> 03:56:26,960
RATHER THAN SUSTAINING ALREADY

6674
03:56:26,960 --> 03:56:29,160
SUCCESSFUL PROGRAMS.

6675
03:56:29,160 --> 03:56:31,360
AND THESE ARE FEATURES THAT WE

6676
03:56:31,360 --> 03:56:32,960
ENVISION SHOULD BE INTEGRATED

6677
03:56:32,960 --> 03:56:35,440
INTO THE APPLICANT PROGRAMS.

6678
03:56:35,440 --> 03:56:37,600
WE WANT TO SEE CREATIVE

6679
03:56:37,600 --> 03:56:39,640
SOLUTIONS TO GAPS THAT WERE

6680
03:56:39,640 --> 03:56:40,480
IDENTIFIED BY THE INSTITUTIONAL

6681
03:56:40,480 --> 03:56:40,840
ENTITY.

6682
03:56:40,840 --> 03:56:46,520
WE WANT THERE TO BE HYPOTENSIONH

6683
03:56:46,520 --> 03:56:48,120
POTENTIAL IMPACT FOR IMPROVING

6684
03:56:48,120 --> 03:56:48,960
RIGOR AND TRANSPARENCY.

6685
03:56:48,960 --> 03:56:50,920
WE WANT TO SEE THEM INTEGRATING

6686
03:56:50,920 --> 03:56:52,400
THESE NEW PRACTICES INTO THEIR

6687
03:56:52,400 --> 03:56:53,520
EVERYDAY CULTURE AS WELL AS, OF

6688
03:56:53,520 --> 03:56:54,360
COURSE, EVALUATING THE PROGRAM

6689
03:56:54,360 --> 03:56:55,800
AND DISSEMINATING THOSE RESULTS.

6690
03:56:55,800 --> 03:56:56,920
WE ALSO WANT TO SEE STRONG

6691
03:56:56,920 --> 03:56:57,920
INSTITUTIONAL COMMITMENT TO

6692
03:56:57,920 --> 03:56:58,920
SUSTAINABILITY BEYOND THE AWARD,

6693
03:56:58,920 --> 03:57:00,360
AS WELL AS SOME POTENTIAL FOR

6694
03:57:00,360 --> 03:57:02,000
SCALABILITY BEYOND THE ENTITY.

6695
03:57:02,000 --> 03:57:04,640
BECAUSE ULTIMATELY, WE WANT TO

6696
03:57:04,640 --> 03:57:07,440
IDENTIFY SUCCESSFUL PROGRAMS

6697
03:57:07,440 --> 03:57:08,600
THAT COULD SPREAD TO OTHER

6698
03:57:08,600 --> 03:57:10,200
ENTITIES INSIDE OR OUTSIDE OF

6699
03:57:10,200 --> 03:57:13,440
THE AWARDEE INSTITUTION.

6700
03:57:13,440 --> 03:57:15,840
AND WE ENVISION THAT THIS WILL

6701
03:57:15,840 --> 03:57:18,200
SUPPORT A VARIETY OF TYPES OF

6702
03:57:18,200 --> 03:57:19,680
PROGRAMS UNDER THIS INITIATIVE,

6703
03:57:19,680 --> 03:57:23,600
RANGING FROM MORE FOCUS TO

6704
03:57:23,600 --> 03:57:24,240
BROADER ACTIVITIES.

6705
03:57:24,240 --> 03:57:25,920
FOR EXAMPLE, WE COULD SEE

6706
03:57:25,920 --> 03:57:31,080
APPLICANTS PROPOSED TO IMPLEMENT

6707
03:57:31,080 --> 03:57:31,640
RECOGNITION AND AWARDS TO

6708
03:57:31,640 --> 03:57:34,280
PROMOTE AWARENESS OF AND

6709
03:57:34,280 --> 03:57:35,560
INCENTIVIZE BEST PRACTICES.

6710
03:57:35,560 --> 03:57:38,600
WE COULD SEE DEDICATED

6711
03:57:38,600 --> 03:57:39,800
SPECIALISTS LIKE DATA MANAGERS

6712
03:57:39,800 --> 03:57:43,480
OR RESEARCH METHODOLOGISTS TO

6713
03:57:43,480 --> 03:57:46,320
HELP THEM CHANGE THEIR EVERYDAY

6714
03:57:46,320 --> 03:57:46,800
LABORATORY WORKFLOWS.

6715
03:57:46,800 --> 03:57:47,920
WE COULD SEE RESTRUCTURING

6716
03:57:47,920 --> 03:57:49,040
TRAINEE PROGRAMS TO EMPHASIZE

6717
03:57:49,040 --> 03:57:51,480
THE QUALITY OF THE RESEARCH OVER

6718
03:57:51,480 --> 03:57:54,080
SAY A CERTAIN NUMBER OF

6719
03:57:54,080 --> 03:57:55,080
PUBLICATIONS BEING REQUIRED FOR

6720
03:57:55,080 --> 03:57:55,440
GRADUATION.

6721
03:57:55,440 --> 03:57:56,800
THERE COULD BE A RESTRUCTURING

6722
03:57:56,800 --> 03:57:58,640
OF HIRING PROMOTION AND TENURE

6723
03:57:58,640 --> 03:57:59,920
CRITERIA TO AGAIN EMPHASIZE

6724
03:57:59,920 --> 03:58:01,280
RIGOR AND TRANSPARENCY OVER

6725
03:58:01,280 --> 03:58:03,480
THINGS LIKE SAY TAITION COUNT OR

6726
03:58:03,480 --> 03:58:04,160
JOURNAL IMPACT FACTOR.

6727
03:58:04,160 --> 03:58:07,080
THERE COULD BE SOME SORT OF

6728
03:58:07,080 --> 03:58:08,360
POLICIES IN PLACE, THIS COULD BE

6729
03:58:08,360 --> 03:58:09,480
THAT ALL PUBLICATIONS NEED TO

6730
03:58:09,480 --> 03:58:14,840
HAVE A MINIMAL REPORTING ITEM IN

6731
03:58:14,840 --> 03:58:16,800
ORDER TO GO OUT THE DOOR, THERE

6732
03:58:16,800 --> 03:58:17,920
COULD BE S.O.P.s AND

6733
03:58:17,920 --> 03:58:18,640
INCORPORATION OF NEW

6734
03:58:18,640 --> 03:58:19,040
INFRASTRUCTURE.

6735
03:58:19,040 --> 03:58:20,600
THIS COULD BE SOCIALIZING

6736
03:58:20,600 --> 03:58:22,640
ELECTRONIC LAB NOTEBOOKS OR

6737
03:58:22,640 --> 03:58:23,840
IMPLEMENTING QUALITY MANAGEMENT

6738
03:58:23,840 --> 03:58:25,280
SYSTEMS.

6739
03:58:25,280 --> 03:58:27,240
THERE COULD BE COMPREHENSIVE

6740
03:58:27,240 --> 03:58:28,640
EDUCATIONAL OR PROFESSIONAL

6741
03:58:28,640 --> 03:58:30,640
DEVELOPMENT PROGRAMS, OR

6742
03:58:30,640 --> 03:58:31,920
FINALLY, PARTNERSHIPS WITH

6743
03:58:31,920 --> 03:58:33,720
OUTSIDE ORGANIZATIONS IN ORDER

6744
03:58:33,720 --> 03:58:37,440
TO TRANSFORM HOW THE ENTITY

6745
03:58:37,440 --> 03:58:37,880
OPERATES.

6746
03:58:37,880 --> 03:58:40,040
AND SO ALTHOUGH VERY DIFFERENT

6747
03:58:40,040 --> 03:58:41,480
PROGRAMS, EACH OF THESE EXAMPLES

6748
03:58:41,480 --> 03:58:43,800
WOULD NEED TO BE JUSTIFIED AND

6749
03:58:43,800 --> 03:58:45,920
FEASIBLE FOR THE PARTICULAR

6750
03:58:45,920 --> 03:58:47,640
ENTITY APPLYING.

6751
03:58:47,640 --> 03:58:49,240
SO IN SUMMARY, WE'D LIKE THERE

6752
03:58:49,240 --> 03:58:51,760
TO BE FEWER DEMANDS ON

6753
03:58:51,760 --> 03:58:53,720
SCIENTISTS THAT DISINCENTIVIZE

6754
03:58:53,720 --> 03:58:55,840
RIGOROUS AND TRANSPARENT

6755
03:58:55,840 --> 03:58:57,040
RESEARCH PRACTICES, AND WITH

6756
03:58:57,040 --> 03:58:58,800
THIS PROPOSED PROGRAM, WE HOPE

6757
03:58:58,800 --> 03:59:00,120
TO SEE ENTITIES WITHIN

6758
03:59:00,120 --> 03:59:01,480
INSTITUTIONS DOING THEIR PART TO

6759
03:59:01,480 --> 03:59:03,560
SUPPORT RESEARCHERS TO BETTER

6760
03:59:03,560 --> 03:59:05,720
VALUE RIGOR AND TRANS PAREN

6761
03:59:05,720 --> 03:59:08,640
SEAL, AND CHANGE HOW RESEARCH IS

6762
03:59:08,640 --> 03:59:12,160
ASSESSED AND REWARDED,

6763
03:59:12,160 --> 03:59:14,000
SUPPORTED, PRODUCED EVEN,

6764
03:59:14,000 --> 03:59:15,360
THEREBY REVERSING THE PRESSURE

6765
03:59:15,360 --> 03:59:18,520
ON SCIENTISTS, AND OUR WORKING

6766
03:59:18,520 --> 03:59:19,800
HYPOTHESIS IS THAT IF SCIENTISTS

6767
03:59:19,800 --> 03:59:21,400
RECEIVE THIS ADEQUATE SUPPORT

6768
03:59:21,400 --> 03:59:23,800
AND THEY SEE THIS ALIGNMENT OF

6769
03:59:23,800 --> 03:59:26,320
VALUES AND INCENTIVES FROM THEIR

6770
03:59:26,320 --> 03:59:28,640
DEPARTMENTS, THEY MAY FEEL MORE

6771
03:59:28,640 --> 03:59:30,320
EMPOWERED TO BOLSTER THEIR OWN

6772
03:59:30,320 --> 03:59:33,720
RESEARCH PRACTICES, AND

6773
03:59:33,720 --> 03:59:35,560
TRANSFORM A LOCAL INSTITUTIONAL

6774
03:59:35,560 --> 03:59:36,520
CULTURE, WHICH ITSELF WOULD

6775
03:59:36,520 --> 03:59:37,960
ENABLE ANY CHANGES TO BECOME

6776
03:59:37,960 --> 03:59:38,280
SUSTAINABLE.

6777
03:59:38,280 --> 03:59:40,040
AND SO WE FEEL THAT THIS PIECE

6778
03:59:40,040 --> 03:59:41,440
IS MISSING FROM OUR CURRENT

6779
03:59:41,440 --> 03:59:43,240
PORTFOLIO OF INITIATIVES THAT

6780
03:59:43,240 --> 03:59:47,640
ARE OUT THERE TO ENHANCE

6781
03:59:47,640 --> 03:59:48,080
TRANSPARENCY.

6782
03:59:48,080 --> 03:59:50,960
SO WITH THAT, I WILL HO OPEN ITP

6783
03:59:50,960 --> 03:59:52,000
FOR QUESTIONS AND FEEDBACK.

6784
03:59:52,000 --> 03:59:52,600
THANK YOU.

6785
03:59:52,600 --> 03:59:54,160
AND I'LL STOP SHARING.

6786
03:59:54,160 --> 03:59:55,320
>>THANKS A LOT, DEVOFNL
THE ONE

6787
03:59:55,320 --> 03:59:56,640
THING YOU CAN SEE IS THIS IS A

6788
03:59:56,640 --> 03:59:57,400
VERY AMBITIOUS PROGRAM.

6789
03:59:57,400 --> 03:59:59,440
THEY'RE REALLY TRYING TO TACKLE

6790
03:59:59,440 --> 04:00:02,360
AN INKR INCREDIBLY IMPORTANT AND

6791
04:00:02,360 --> 04:00:03,160
INCREDIBLY DIFFICULT ISSUE.

6792
04:00:03,160 --> 04:00:05,080
AND THIS IS ALSO A PRETTY BRAND

6793
04:00:05,080 --> 04:00:05,920
NEW PROPOSAL.

6794
04:00:05,920 --> 04:00:07,680
SO WE REALLY WOULD LIKE TO HEAR

6795
04:00:07,680 --> 04:00:11,680
WHAT YOU THINK, IF YOU HAVE

6796
04:00:11,680 --> 04:00:12,320
IDEAS THAT COULD BE POTENTIALLY

6797
04:00:12,320 --> 04:00:13,240
INCORPORATED INTO THIS, IF YOU

6798
04:00:13,240 --> 04:00:14,400
THINK THIS IS THE RIGHT

6799
04:00:14,400 --> 04:00:16,520
APPROACH, ET CETERA.

6800
04:00:16,520 --> 04:00:18,800
SO I'LL THROW OPEN THE FLOOR.

6801
04:00:18,800 --> 04:00:20,000
BECAUSE MANY OF YOU KNOW BETTER

6802
04:00:20,000 --> 04:00:22,440
THAN WE DO, YOU KNOW, HOW YOUR

6803
04:00:22,440 --> 04:00:23,560
INSTITUTIONS CHANGE.

6804
04:00:23,560 --> 04:00:25,760
LET'S START WITH SAMEER, THEN

6805
04:00:25,760 --> 04:00:27,640
HANK GREELY.

6806
04:00:27,640 --> 04:00:28,880
>>THANKS, DEVON.

6807
04:00:28,880 --> 04:00:30,400
VERY INTERESTING, LIKE BOB SAID,

6808
04:00:30,400 --> 04:00:34,120
SUPER AMBITIOUS.

6809
04:00:34,120 --> 04:00:36,080
AND YOU'RE FIGHTING A BATTLE ON

6810
04:00:36,080 --> 04:00:37,120
MANY FRONTS.

6811
04:00:37,120 --> 04:00:38,760
YOU KNOW, I WONDER IF -- SO I

6812
04:00:38,760 --> 04:00:42,040
DON'T HAVE A SOLUTION TO ANY OF

6813
04:00:42,040 --> 04:00:43,280
THAT, BUT I WONDER IF THERE'S

6814
04:00:43,280 --> 04:00:45,280
ANOTHER PART OF THIS THAT CAN BE

6815
04:00:45,280 --> 04:00:46,240
INCORPORATED, MAYBE NOT TO MAKE

6816
04:00:46,240 --> 04:00:47,920
IT MORE COMPLICATED BUT MAYBE TO

6817
04:00:47,920 --> 04:00:50,320
TRY TO GET MORE BANG FOR YOUR

6818
04:00:50,320 --> 04:00:52,320
BUCK, WHICH IS JUST SO MUCH THAT

6819
04:00:52,320 --> 04:00:55,640
WE HAVE TALKED ABOUT ON DATA

6820
04:00:55,640 --> 04:00:56,120
SHARING.

6821
04:00:56,120 --> 04:01:00,000
THERE'S A LOT OF, I THINK,

6822
04:01:00,000 --> 04:01:01,960
OVERLAP BETWEEN RIGOR,

6823
04:01:01,960 --> 04:01:02,960
REPRODUCIBILITY AND SHARING OF

6824
04:01:02,960 --> 04:01:04,200
DATA, AND OBVIOUSLY THE LATTER

6825
04:01:04,200 --> 04:01:06,720
IS BEING MANDATED AT THE VARIOUS

6826
04:01:06,720 --> 04:01:08,080
LEVELS, WE'RE ALREADY DOING SOME

6827
04:01:08,080 --> 04:01:09,760
OF IT, WE NEED TO DO MORE OF IT

6828
04:01:09,760 --> 04:01:13,680
AS OF LIKE FIVE DAYS AGO, RIGHT?

6829
04:01:13,680 --> 04:01:16,040
AND NOT ONLY WOULD ALIGNING

6830
04:01:16,040 --> 04:01:21,360
THESE KIND OF EFFORTS ALLOW FOR

6831
04:01:21,360 --> 04:01:24,120
DATA AND ANALYSES TO BE CHECKED

6832
04:01:24,120 --> 04:01:26,240
IN TERMS OF RIGOR, BUT IT WOULD

6833
04:01:26,240 --> 04:01:29,880
ALSO OBVIOUSLY ALLOW GROUPS TO

6834
04:01:29,880 --> 04:01:33,480
BE ABLE TO USE DATA MORE

6835
04:01:33,480 --> 04:01:35,360
EFFECTIVELY, WHICH IS NOT

6836
04:01:35,360 --> 04:01:37,440
NECESSARILY PART OF THE SBIR,

6837
04:01:37,440 --> 04:01:44,360
BUT IT'S ANOTHER ASPECT OF

6838
04:01:44,360 --> 04:01:47,680
INITIATIVES THAT WE'RE

6839
04:01:47,680 --> 04:01:48,200
INTERESTED -- BY BRAIN AND

6840
04:01:48,200 --> 04:01:48,600
NINDS, ET CETERA.

6841
04:01:48,600 --> 04:01:50,200
SO I WONDER IF THERE'S SOME

6842
04:01:50,200 --> 04:01:53,360
OVERLAP THERE WHERE PART OF THIS

6843
04:01:53,360 --> 04:01:57,720
INITIATIVE ALSO FOCUSES ON BEST

6844
04:01:57,720 --> 04:01:58,920
PRACTICES FOR DATA SHARING.

6845
04:01:58,920 --> 04:02:00,320
THERE'S A LOT OF OVERLAPPING

6846
04:02:00,320 --> 04:02:02,000
INCENTIVES OR DISINCENTIVES, YOU

6847
04:02:02,000 --> 04:02:03,440
KNOW, WHEN YOU TALK ABOUT DATA

6848
04:02:03,440 --> 04:02:05,200
SHARING, IF YOU'RE THE ONE

6849
04:02:05,200 --> 04:02:05,800
SHARING DATA, WHAT DO YOU GET

6850
04:02:05,800 --> 04:02:06,440
OUT OF IT?

6851
04:02:06,440 --> 04:02:07,800
IF YOU'RE USING SHARED DATA,

6852
04:02:07,800 --> 04:02:10,520
WHAT DO YOU LOSE AS IN JOURNALS

6853
04:02:10,520 --> 04:02:12,000
ARE NOT GOING TO BE AS EXCITED

6854
04:02:12,000 --> 04:02:12,960
ABOUT RECYCLED DATA.

6855
04:02:12,960 --> 04:02:16,080
SO THERE'S A LOT OF THAT SORT OF

6856
04:02:16,080 --> 04:02:16,560
INCENTIVE/DISINCENTIVE

6857
04:02:16,560 --> 04:02:17,400
CALCULATION THAT COMES IN WITH

6858
04:02:17,400 --> 04:02:19,600
DATA SHARING THAT I THINK

6859
04:02:19,600 --> 04:02:21,280
OVERLAPS WITH THOSE CALCULATIONS

6860
04:02:21,280 --> 04:02:22,360
FOR THIS INITIATIVE.

6861
04:02:22,360 --> 04:02:23,760
SO I WONDER IF, YOU KNOW, THAT

6862
04:02:23,760 --> 04:02:25,720
COULD BE SOMETHING THAT YOU'VE

6863
04:02:25,720 --> 04:02:27,040
THOUGHT ABOUT.

6864
04:02:27,040 --> 04:02:29,080
>>YEAH, SO YOU KNOW, I
SEE SORT

6865
04:02:29,080 --> 04:02:31,560
OF DATA SHARING, OPEN SCIENCE,

6866
04:02:31,560 --> 04:02:33,160
AS PART OF THE TRANSPARENCY ARM,

6867
04:02:33,160 --> 04:02:34,480
AND SO THAT'S NOT THE ONLY THING

6868
04:02:34,480 --> 04:02:36,000
WE WOULD LIKE TO SEE COME IN

6869
04:02:36,000 --> 04:02:38,360
BECAUSE, OF COURSE, THERE ARE A

6870
04:02:38,360 --> 04:02:39,360
LOT OF EFFORTS IN THE DATA

6871
04:02:39,360 --> 04:02:40,840
SHARING SPACE CURRENTLY.

6872
04:02:40,840 --> 04:02:42,400
ODSS HAS A LOT OF INITIATIVES

6873
04:02:42,400 --> 04:02:43,280
GOING ON.

6874
04:02:43,280 --> 04:02:47,040
BUT ABSOL ABSOLUTELY, WE MENTION

6875
04:02:47,040 --> 04:02:48,720
THERE HAVING DATA MANAGERS,

6876
04:02:48,720 --> 04:02:49,680
HELPING PEOPLE ORGANIZE AND

6877
04:02:49,680 --> 04:02:51,240
CHANGE THEIR WORKFLOWS.

6878
04:02:51,240 --> 04:02:52,720
THAT'S ABSOLUTELY WITHIN SCOPE

6879
04:02:52,720 --> 04:02:53,600
OF WHAT WE'RE THINKING.

6880
04:02:53,600 --> 04:02:55,360
AND SO IT'S ABOUT LIKE CHANGING

6881
04:02:55,360 --> 04:02:57,120
THAT CULTURE AND TEACHING PEOPLE

6882
04:02:57,120 --> 04:02:58,360
HOWL TO DO THINGS BETTER, BUT

6883
04:02:58,360 --> 04:02:59,560
HOW TO MAKE THOSE CHANGES

6884
04:02:59,560 --> 04:03:00,120
SUSTAINABLE.

6885
04:03:00,120 --> 04:03:01,320
THAT'S REALLY WHAT WE WANT TO

6886
04:03:01,320 --> 04:03:07,080
SEE, IS THAT CULTURE CHANGE.

6887
04:03:07,080 --> 04:03:08,200
>>GOOD QUESTION.

6888
04:03:08,200 --> 04:03:08,400
HANK.

6889
04:03:08,400 --> 04:03:10,600
>>SO THIS SOUNDS REALLY

6890
04:03:10,600 --> 04:03:11,680
IMPORTANT, REALLY AMBITIOUS AND

6891
04:03:11,680 --> 04:03:13,080
REALLY HARD.

6892
04:03:13,080 --> 04:03:13,840
CHANGING ANYBODY'S CULTURE IS

6893
04:03:13,840 --> 04:03:15,400
HARD, CHANGING OTHER PEOPLE'S

6894
04:03:15,400 --> 04:03:18,560
CULTURE IS PROBABLY EVEN HARDER.

6895
04:03:18,560 --> 04:03:20,680
WHEN I THINK ABOUT WHAT NINDS

6896
04:03:20,680 --> 04:03:23,280
CAN DO TO CHANGE WHAT STANFORD

6897
04:03:23,280 --> 04:03:25,280
CONSIDERS THE APPROPRIATE STAGE

6898
04:03:25,280 --> 04:03:26,360
FOR TENURE, GOOD LUCK.

6899
04:03:26,360 --> 04:03:28,080
I'M NOT SURE THAT ANYBODY AT

6900
04:03:28,080 --> 04:03:29,800
STANFORD CAN CHANGE WHAT

6901
04:03:29,800 --> 04:03:31,120
STANFORD CONSIDERS THE

6902
04:03:31,120 --> 04:03:32,240
APPROPRIATE LEVEL FOR STANFORD.

6903
04:03:32,240 --> 04:03:35,120
BUT THERE ARE THINGS THAT NINDS

6904
04:03:35,120 --> 04:03:36,320
AND NIH MORE BROADLY HAVE SOME

6905
04:03:36,320 --> 04:03:36,880
CONTROL OVER.

6906
04:03:36,880 --> 04:03:39,160
I THINK YOU CAN GET A LOT OF

6907
04:03:39,160 --> 04:03:40,240
RESEARCHERS' ATTENTION IF, FOR

6908
04:03:40,240 --> 04:03:41,640
EXAMPLE, YOU FIGURED OUT A WAY

6909
04:03:41,640 --> 04:03:43,160
TO HAVE STUDY SECTIONS PAY

6910
04:03:43,160 --> 04:03:45,920
ATTENTION TO THE RIGOR OF

6911
04:03:45,920 --> 04:03:47,000
APPLICANTS' PAPERS.

6912
04:03:47,000 --> 04:03:48,960
AND THE RIGOR WITH WHICH THE

6913
04:03:48,960 --> 04:03:52,440
PAPERS THAT SUPPORT THE

6914
04:03:52,440 --> 04:03:55,920
PARTICULAR APPLICATION GO.

6915
04:03:55,920 --> 04:03:59,720
NOW THIS COULD BE PRESUMABLY

6916
04:03:59,720 --> 04:04:02,000
NICE, NON-CONTROVERSIAL GOOD

6917
04:04:02,000 --> 04:04:03,960
LUCK ON BOTH OF THOSE WAYS TO

6918
04:04:03,960 --> 04:04:04,560
MEASURE RIGOR, BUT THAT WOULD

6919
04:04:04,560 --> 04:04:07,560
GET PEOPLE'S ATTENTION, AND

6920
04:04:07,560 --> 04:04:09,120
THAT'S UNDER NIH OR NINDS

6921
04:04:09,120 --> 04:04:09,320
CONTROL.

6922
04:04:09,320 --> 04:04:11,000
>>TAKE IT AWAY, DEVON.

6923
04:04:11,000 --> 04:04:13,640
>>I MEAN, I WILL SAY THAT
I

6924
04:04:13,640 --> 04:04:15,360
DON'T DISAGREE THAT THAT IS A

6925
04:04:15,360 --> 04:04:22,360
VERY INTERESTING IDEA.

6926
04:04:22,360 --> 04:04:23,640
AND THERE ARE ISSUES FOR EXAMPLE

6927
04:04:23,640 --> 04:04:26,920
THAT CURRENTLY -- WITH GRANT

6928
04:04:26,920 --> 04:04:28,680
APPLICATIONS THAT REVIEWERS ARE

6929
04:04:28,680 --> 04:04:30,000
NOT REQUIRED TO LOOK UP ANYTHING

6930
04:04:30,000 --> 04:04:31,040
THAT IS NOT PROVIDED WITH THE

6931
04:04:31,040 --> 04:04:31,840
GRANT APPLICATION, SO THAT WOULD

6932
04:04:31,840 --> 04:04:33,720
BE, YOU KNOW, A POLICY ISSUE WE

6933
04:04:33,720 --> 04:04:36,120
WOULD HAVE TO CONTEND WITH.

6934
04:04:36,120 --> 04:04:38,880
BUT ABSOLUTELY, AS PART OF OUR

6935
04:04:38,880 --> 04:04:40,480
SELECT PAY, SO THAT'S BEYOND THE

6936
04:04:40,480 --> 04:04:41,440
PAYLINE, IT'S AFTER THE

6937
04:04:41,440 --> 04:04:42,640
SCIENTIFIC MERIT REVIEW.

6938
04:04:42,640 --> 04:04:44,400
WE DO CONSIDER INVESTIGATOR

6939
04:04:44,400 --> 04:04:46,360
RIGOR WHEN LOOKING AT SELECT PAY

6940
04:04:46,360 --> 04:04:46,760
ITEMS.

6941
04:04:46,760 --> 04:04:48,960
SO THAT'S SOMETHING WE CAN DO

6942
04:04:48,960 --> 04:04:49,360
PROGRAMMATICALLY.

6943
04:04:49,360 --> 04:04:51,840
BUT YOU KNOW, CHANGING CENTRAL

6944
04:04:51,840 --> 04:04:53,920
CSR REVIEW CRITERIA TO ALLOW FOR

6945
04:04:53,920 --> 04:04:55,600
LOOKING THROUGH PEOPLE'S PAPERS,

6946
04:04:55,600 --> 04:04:57,040
THAT'S, YOU KNOW, NOT SOMETHING

6947
04:04:57,040 --> 04:04:58,160
I'M GOING TO COMMENT OR PROMISE

6948
04:04:58,160 --> 04:05:00,120
THAT WE CAN DO.

6949
04:05:00,120 --> 04:05:04,000
>>BUT IN A BROADER SENSE,
HANK,

6950
04:05:04,000 --> 04:05:05,680
SHI AND OTHERS HAVE HAD AN

6951
04:05:05,680 --> 04:05:09,440
ENORMOUS EFFECT ON CSR'S SOPs

6952
04:05:09,440 --> 04:05:09,960
FOR DOING REVIEWS.

6953
04:05:09,960 --> 04:05:12,920
MAYBE NOT AS MUCH OF AN EFFECT

6954
04:05:12,920 --> 04:05:14,240
AS THEY WANTED BUT STUDY

6955
04:05:14,240 --> 04:05:15,480
SECTIONS ARE NOW TAKING -- THE

6956
04:05:15,480 --> 04:05:17,320
GOAL IS FOR STUDY SECTIONS TO

6957
04:05:17,320 --> 04:05:18,760
TAKE RIGOR MUCH MORE INTO

6958
04:05:18,760 --> 04:05:20,720
ACCOUNT THAN THEY DID IN THE

6959
04:05:20,720 --> 04:05:21,040
PAST.

6960
04:05:21,040 --> 04:05:22,800
THIS IS A DIFFICULT ASK, BUT

6961
04:05:22,800 --> 04:05:28,320
THEY HAVE -- SHI AND ALL HAVE

6962
04:05:28,320 --> 04:05:29,000
CHANGED THAT CULTURE.

6963
04:05:29,000 --> 04:05:30,000
BUT THERE'S STILL A WAY TO GO.

6964
04:05:30,000 --> 04:05:31,480
>>FOR EXAMPLE, IF WE ARE
TAKING

6965
04:05:31,480 --> 04:05:33,520
INTO ACCOUNT RIGOR ON THE

6966
04:05:33,520 --> 04:05:38,240
SELECTED ONES BELOW THE

6967
04:05:38,240 --> 04:05:40,200
PAYLINE -- MAKING SURE THAT

6968
04:05:40,200 --> 04:05:44,280
APPLICANTS KNOW THIS IS --

6969
04:05:44,280 --> 04:05:46,920
[SPEAKER CUTTING OUT]

6970
04:05:46,920 --> 04:05:50,400
>>DID HE FREEZE FOR YOU
ALL AS

6971
04:05:50,400 --> 04:05:50,600
WELL?

6972
04:05:50,600 --> 04:05:51,920
>>YES.

6973
04:05:51,920 --> 04:05:54,400
>> -- HERE I AM IN THE
MIDDLE

6974
04:05:54,400 --> 04:05:56,040
OF SILICON VALLEY AND MY

6975
04:05:56,040 --> 04:05:57,680
INTERNET HAS BEEN ERRATIC AT

6976
04:05:57,680 --> 04:05:59,440
BEST DURING THIS.

6977
04:05:59,440 --> 04:06:00,680
I APOLOGIZE.

6978
04:06:00,680 --> 04:06:02,240
I WISH I KNEW HOW TO FIX IT.

6979
04:06:02,240 --> 04:06:05,040
ALL I WAS SAYING WAS, HAVE WE

6980
04:06:05,040 --> 04:06:06,600
PUBLICIZE -- TO THE EXTENT WE

6981
04:06:06,600 --> 04:06:08,480
TAKE RIGOR INTO CONSIDERATION,

6982
04:06:08,480 --> 04:06:10,200
IN THE ONES BETWEEN 14

6983
04:06:10,200 --> 04:06:11,680
PERCENTILE AND 25TH PERCENTILE

6984
04:06:11,680 --> 04:06:14,080
OR WHATEVER THE SELECT ONES ARE,

6985
04:06:14,080 --> 04:06:15,400
HOW MUCH DO APPLICANTS KNOW

6986
04:06:15,400 --> 04:06:17,480
THAT?

6987
04:06:17,480 --> 04:06:20,320
HOW MUCH -- IS THAT SOMETHING

6988
04:06:20,320 --> 04:06:22,520
THAT IS SIGNIFICANT ENOUGH OR

6989
04:06:22,520 --> 04:06:24,120
APPEARS TO APPLICANTS TO BE

6990
04:06:24,120 --> 04:06:25,880
SIGNIFICANT ENOUGH FOR POSSIBLY

6991
04:06:25,880 --> 04:06:27,360
TO CHANGE THEIR BEHAVIOR?

6992
04:06:27,360 --> 04:06:28,800
>>I WOULD SAY I DON'T
KNOW WHAT

6993
04:06:28,800 --> 04:06:31,600
THE APPLICANT PERCEPTION IS, BUT

6994
04:06:31,600 --> 04:06:33,480
I DO KNOW WE HAVE IT ON OUR

6995
04:06:33,480 --> 04:06:35,000
WEBSITE BUT WE PROBABLY COULD DO

6996
04:06:35,000 --> 04:06:36,680
A BETTER JOB OF ADVERTISING

6997
04:06:36,680 --> 04:06:37,280
THAT.

6998
04:06:37,280 --> 04:06:39,400
>>HANK, FOR A GUY WHO
PROFESSES

6999
04:06:39,400 --> 04:06:42,440
NOT TO UNDERSTAND NIH VERY WELL,

7000
04:06:42,440 --> 04:06:44,320
YOU UNDERSTAND NIH VERY WELL.

7001
04:06:44,320 --> 04:06:45,960
I THINK WE DO NEED TO PUBLICIZE

7002
04:06:45,960 --> 04:06:48,760
THAT MORE THAN WE CURRENTLY DO.

7003
04:06:48,760 --> 04:06:49,560
MANY APPLICANTS DON'T REALIZE

7004
04:06:49,560 --> 04:06:51,920
THAT IF THEY'RE IN THE SELECTIVE

7005
04:06:51,920 --> 04:06:53,480
PAY ZONE, THAT WE REALLY DO PAY

7006
04:06:53,480 --> 04:06:54,360
ATTENTION TO RIGOR.

7007
04:06:54,360 --> 04:06:56,320
SO I THINK THAT'S AN IMPORTANT

7008
04:06:56,320 --> 04:06:56,520
POINT.

7009
04:06:56,520 --> 04:06:58,120
>>I WILL ADD, I DON'T
THINK I

7010
04:06:58,120 --> 04:07:00,360
UNDERSTAND NIH VERY WELL, BUT I

7011
04:07:00,360 --> 04:07:03,120
DON'T THINK ANYBODY UNDERSTANDS

7012
04:07:03,120 --> 04:07:03,560
NIH VERY WELL.

7013
04:07:03,560 --> 04:07:06,480
>>THERE USED TO BE A
STORY BY

7014
04:07:06,480 --> 04:07:08,880
THOMAS WOLF CALLED "ONLY THE

7015
04:07:08,880 --> 04:07:10,400
DEAD KNOW BROOKLYN," WHICH IS A

7016
04:07:10,400 --> 04:07:14,600
VERY SIMILAR PRINCIPLE.

7017
04:07:14,600 --> 04:07:14,800
GINA.

7018
04:07:14,800 --> 04:07:16,440
>>I WANTED TO ACTUALLY
SORT OF

7019
04:07:16,440 --> 04:07:19,360
PIGGY BACK ON HANK'S COMMENT AND

7020
04:07:19,360 --> 04:07:21,280
I'D SAY THAT I ACTUALLY BELIEVE

7021
04:07:21,280 --> 04:07:24,040
THERE IS NO FASTER WAY TO CHANGE

7022
04:07:24,040 --> 04:07:26,000
CULTURE REGARDING RIGOR AND

7023
04:07:26,000 --> 04:07:27,320
REPRODUCIBILITY OF SCIENCE THAN

7024
04:07:27,320 --> 04:07:27,600
NIH POLICY.

7025
04:07:27,600 --> 04:07:30,320
I THINK IF THE NIH CHANGES THEIR

7026
04:07:30,320 --> 04:07:32,400
POLICY AND MAKES IT SO THAT, YOU

7027
04:07:32,400 --> 04:07:33,480
KNOW, EVERYBODY HAS TO POST

7028
04:07:33,480 --> 04:07:39,800
THEIR DATA AND EVERYBODY HAS TO

7029
04:07:39,800 --> 04:07:41,240
PUBLISH ONE FIGURE AT A TIME AS

7030
04:07:41,240 --> 04:07:42,840
THE DATA COME OUT, YOU KNOW, AS

7031
04:07:42,840 --> 04:07:47,560
THE DATA ROLL OFF THE BENCH, I

7032
04:07:47,560 --> 04:07:49,280
THINK EVERY -- STANFORD

7033
04:07:49,280 --> 04:07:51,120
INCLUDED, EVERY DEPARTMENT THAT

7034
04:07:51,120 --> 04:07:52,560
RELIES ON NIH MONEY WILL SIT UP

7035
04:07:52,560 --> 04:07:54,160
AND TAKE NOTICE AND CHANGE THEIR

7036
04:07:54,160 --> 04:07:56,080
POLICY AND CHANGE THE WAY THAT

7037
04:07:56,080 --> 04:07:56,680
THEY PROMOTE.

7038
04:07:56,680 --> 04:07:58,320
I THINK REALLY THERE IS NO

7039
04:07:58,320 --> 04:08:00,080
FASTER WAY TO GET PUBLICATIONS

7040
04:08:00,080 --> 04:08:02,640
TO CHANGE THEIR POLICY THAN FOR

7041
04:08:02,640 --> 04:08:05,280
NIH TO SAY, LISTEN, YOU KNOW,

7042
04:08:05,280 --> 04:08:07,640
WE'RE NOT GOING TO FUND THIS

7043
04:08:07,640 --> 04:08:14,760
RESEARCH UNLESS THIS HAPPENS.

7044
04:08:14,760 --> 04:08:16,280
SO I THINK THIS IS EXTREMELY

7045
04:08:16,280 --> 04:08:17,800
EXCITING, I THINK IT WILL BE

7046
04:08:17,800 --> 04:08:19,440
EXTREMELY IMPACTFUL AND I WANT

7047
04:08:19,440 --> 04:08:20,840
TO EMPOWER YOU TO TAKE STRONG

7048
04:08:20,840 --> 04:08:21,760
MEASURES BECAUSE THIS IS THE WAY

7049
04:08:21,760 --> 04:08:23,800
TO DO IT, THIS IS THE BEST WAY

7050
04:08:23,800 --> 04:08:24,120
TO DO IT.

7051
04:08:24,120 --> 04:08:25,760
>>THANKS A LOT, GINA.

7052
04:08:25,760 --> 04:08:26,760
JOHN?

7053
04:08:26,760 --> 04:08:29,080
>>YEAH, I JUST REALLY
THANK

7054
04:08:29,080 --> 04:08:30,000
YOU, DEVON, FOR THAT

7055
04:08:30,000 --> 04:08:30,440
PRESENTATION.

7056
04:08:30,440 --> 04:08:32,160
I REALLY JUST WANTED TO ADD MY

7057
04:08:32,160 --> 04:08:33,720
VOICE IN SUPPORT OF THIS EFFORT.

7058
04:08:33,720 --> 04:08:35,520
IT IS SO IMPORTANT, YOU KNOW,

7059
04:08:35,520 --> 04:08:36,800
ALL THE INCENTIVES ARE IN THE

7060
04:08:36,800 --> 04:08:38,640
WRONG PLACE RIGHT NOW, AND IT'S

7061
04:08:38,640 --> 04:08:39,960
COSTING US ENORMOUSLY IN TERMS

7062
04:08:39,960 --> 04:08:41,720
OF RESEARCH PRODUCTIVITY.

7063
04:08:41,720 --> 04:08:43,240
SO I'M REALLY LOOKING FORWARD TO

7064
04:08:43,240 --> 04:08:44,960
SEEING WHAT COMES OUT OF THIS.

7065
04:08:44,960 --> 04:08:46,480
I HOPE THERE WILL BE SOME WAY IN

7066
04:08:46,480 --> 04:08:48,880
WHICH WE CAN GET THE

7067
04:08:48,880 --> 04:08:50,920
RELIABILITY, THE RIGOR OF THE

7068
04:08:50,920 --> 04:08:53,720
WORK IN AN ARTICLE SOMEHOW MORE

7069
04:08:53,720 --> 04:08:55,560
VISIBLE AND OBVIOUS AND

7070
04:08:55,560 --> 04:08:58,440
CONSPICUOUS AS PEOPLE ARE

7071
04:08:58,440 --> 04:08:58,920
READING THE LITERATURE.

7072
04:08:58,920 --> 04:08:59,680
BECAUSE I THINK IT'S SO

7073
04:08:59,680 --> 04:09:00,880
IMPORTANT FOR US THAT THAT

7074
04:09:00,880 --> 04:09:01,960
MEASURE GET UP FRONT.

7075
04:09:01,960 --> 04:09:03,560
SO THANK YOU FOR YOUR WORK ON

7076
04:09:03,560 --> 04:09:08,080
THIS.

7077
04:09:08,080 --> 04:09:08,920
>>THANKS, JOHN.

7078
04:09:08,920 --> 04:09:09,360
DAVID?

7079
04:09:09,360 --> 04:09:11,960
>>COULDN'T AGREE MORE
WITH WHAT

7080
04:09:11,960 --> 04:09:15,000
EVERYONE HAS SAID SO FAR.

7081
04:09:15,000 --> 04:09:17,120
WITH JOURNAL, WE'RE REQUIRING

7082
04:09:17,120 --> 04:09:18,520
THE STATEMENT WITH EVERY

7083
04:09:18,520 --> 04:09:19,440
MANUSCRIPT STARTING JANUARY 1ST

7084
04:09:19,440 --> 04:09:21,200
AND WE'LL SEE WHAT SORT OF

7085
04:09:21,200 --> 04:09:21,840
EFFECT THAT HAS ON OUR FIELD.

7086
04:09:21,840 --> 04:09:23,600
WE ALSO HAVE A SIMILAR

7087
04:09:23,600 --> 04:09:24,360
REPRODUCIBILITY CRISIS IN THE

7088
04:09:24,360 --> 04:09:29,400
FIELD OF TRAUMATIC BRAIN INJURY.

7089
04:09:29,400 --> 04:09:31,320
AND AS PER YOUR POINT,

7090
04:09:31,320 --> 04:09:33,200
DR. CRAWFORD, ABOUT WHAT THE

7091
04:09:33,200 --> 04:09:34,720
APPLICANTS THINK, THEY MOSTLY

7092
04:09:34,720 --> 04:09:36,240
THINK ABOUT GOSH IF I'M

7093
04:09:36,240 --> 04:09:37,440
PUBLISHED IN A HIGH PROFILE

7094
04:09:37,440 --> 04:09:38,840
JOURNAL, I HAVE A GOOD CHANCE OF

7095
04:09:38,840 --> 04:09:40,360
GETTING MY GRANT FUNDED.

7096
04:09:40,360 --> 04:09:41,680
KIND OF THE GENERAL RULE THAT

7097
04:09:41,680 --> 04:09:42,960
APPLICANTS OFTEN THINK IS ONE

7098
04:09:42,960 --> 04:09:44,640
HIGH PROFILE PAPER AS

7099
04:09:44,640 --> 04:09:47,040
PRELIMINARY DATA PER AIM.

7100
04:09:47,040 --> 04:09:48,560
AND IF YOU'RE GOOD THERE, YOU'RE

7101
04:09:48,560 --> 04:09:49,200
GOOD TO GO.

7102
04:09:49,200 --> 04:09:50,600
SO THAT'S KIND OF LIKE, I DON'T

7103
04:09:50,600 --> 04:09:52,320
KNOW, MY FEELING ABOUT THE

7104
04:09:52,320 --> 04:09:53,680
GENERAL GESTALT OUT THERE.

7105
04:09:53,680 --> 04:09:55,760
OVER.

7106
04:09:55,760 --> 04:09:57,480
>>THANKS, DAVID.

7107
04:09:57,480 --> 04:09:57,640
TIM?

7108
04:09:57,640 --> 04:09:58,880
>>I, OF COURSE, SECOND

7109
04:09:58,880 --> 04:09:59,960
EVERYBODY'S OPINION.

7110
04:09:59,960 --> 04:10:03,880
I THINK THAT ONE OF THE

7111
04:10:03,880 --> 04:10:05,440
CHALLENGES I'VE SEEN AS BOTH A

7112
04:10:05,440 --> 04:10:06,520
REVIEWER AND WRITER OF GRANTS

7113
04:10:06,520 --> 04:10:08,480
WHERE YOU HAVE TO PUT IN

7114
04:10:08,480 --> 04:10:09,600
STATEMENTS IS IT'S NOT CODIFIED

7115
04:10:09,600 --> 04:10:10,760
VERY WELL.

7116
04:10:10,760 --> 04:10:12,160
LIKE MOST PEOPLE I KNOW DON'T

7117
04:10:12,160 --> 04:10:14,120
QUITE KNOW WHAT THEY NEED TO

7118
04:10:14,120 --> 04:10:14,880
WRITE IN THESE STATEMENTS.

7119
04:10:14,880 --> 04:10:16,160
OTHER THAN OBVIOUSLY WE MAKE

7120
04:10:16,160 --> 04:10:17,840
EVERY EFFORT TO BE RIGOROUS.

7121
04:10:17,840 --> 04:10:21,600
SOMETIMES, YOU KNOW IF IT'S A

7122
04:10:21,600 --> 04:10:25,360
STRAIGHT STATISTICAL ANALYSIS,

7123
04:10:25,360 --> 04:10:26,640
IT'S EASIER TO CODE GUY WHAT YOU

7124
04:10:26,640 --> 04:10:27,560
HAVE TO DO.

7125
04:10:27,560 --> 04:10:28,800
SAMPLE SIZE, SOMETHING YOU LIKE

7126
04:10:28,800 --> 04:10:31,200
FOR EFFECT.

7127
04:10:31,200 --> 04:10:33,640
BUT IT ISN'T ALWAYS CLEAR IN

7128
04:10:33,640 --> 04:10:35,520
BASIC SCIENCE WHAT CONSTITUTES

7129
04:10:35,520 --> 04:10:35,800
RIGOR.

7130
04:10:35,800 --> 04:10:37,760
SO I'D JUST SAY, I KNOW ON STUDY

7131
04:10:37,760 --> 04:10:39,520
SECTION, THIS WAS A VERY

7132
04:10:39,520 --> 04:10:40,600
FRUSTRATING THING.

7133
04:10:40,600 --> 04:10:42,640
THERE'S NO UNIFORM STANDARD FOR

7134
04:10:42,640 --> 04:10:43,880
SAYING, OH, THIS DOESN'T MEET

7135
04:10:43,880 --> 04:10:46,040
THE CRY TIER YO FOR BEING

7136
04:10:46,040 --> 04:10:47,240
RIGOROUS OTHER THAN I'VE GOT A

7137
04:10:47,240 --> 04:10:48,520
FEELING THIS LOOKS KIND OF

7138
04:10:48,520 --> 04:10:48,880
SLOPPY.

7139
04:10:48,880 --> 04:10:50,160
BUT IT'S ONE THING TO MAKE A

7140
04:10:50,160 --> 04:10:53,440
STATEMENT THAT I'M GOING TO TRY

7141
04:10:53,440 --> 04:10:54,520
AND NOT BE SLOPPY BUT I DON'T

7142
04:10:54,520 --> 04:10:56,800
KNOW HOW THE NIH EVEN EXPECTS US

7143
04:10:56,800 --> 04:10:58,600
HOW TO TREAT THIS, REALLY, AS

7144
04:10:58,600 --> 04:10:59,840
THE REVIEWER-BASED SIDE.

7145
04:10:59,840 --> 04:11:03,880
>>I WILL SAY THAT WE TRY
TO

7146
04:11:03,880 --> 04:11:05,640
PROVIDE GUIDANCE, WE HAVE

7147
04:11:05,640 --> 04:11:06,400
GUIDANCE ON OUR WEBSITE ON WHAT

7148
04:11:06,400 --> 04:11:07,240
TO INCLUDE IN GRANT

7149
04:11:07,240 --> 04:11:08,160
APPLICATIONS.

7150
04:11:08,160 --> 04:11:09,440
WE'RE ALSO DEVELOPING THIS

7151
04:11:09,440 --> 04:11:10,480
EDUCATIONAL RESOURCE THAT WE'RE

7152
04:11:10,480 --> 04:11:11,680
HOPING WILL BE USED WIDELY ONCE

7153
04:11:11,680 --> 04:11:12,920
IT IS FULLY DEVELOPED.

7154
04:11:12,920 --> 04:11:15,360
IT IS CURRENTLY JUST, YOU KNOW,

7155
04:11:15,360 --> 04:11:16,160
UNDER DEVELOPMENT AND SO WE

7156
04:11:16,160 --> 04:11:17,800
DON'T HAVE ANYTHING YET TO SHARE

7157
04:11:17,800 --> 04:11:18,560
ABOUT THAT.

7158
04:11:18,560 --> 04:11:20,320
BUT IN ORDER TO PROVIDE PEOPLE

7159
04:11:20,320 --> 04:11:21,880
THIS GUIDANCE SO THEY CAN'T SAY

7160
04:11:21,880 --> 04:11:23,240
I JUST DON'T KNOW WHAT I'M

7161
04:11:23,240 --> 04:11:24,320
SUPPOSED TO BE DOING.

7162
04:11:24,320 --> 04:11:26,480
SO WE'RE TRYING TO ATTACK THIS

7163
04:11:26,480 --> 04:11:27,360
FROM MULTIPLE ANGLES.

7164
04:11:27,360 --> 04:11:29,040
>>I'M VERY HAPPY TO HEAR
THAT,

7165
04:11:29,040 --> 04:11:29,480
DEVON.

7166
04:11:29,480 --> 04:11:29,720
THANKS.

7167
04:11:29,720 --> 04:11:31,760
ONE OF THE THINGS I'VE ALWAYS

7168
04:11:31,760 --> 04:11:34,000
NOTICED IS LIKE JUST IN MY OWN

7169
04:11:34,000 --> 04:11:35,120
LAB'S WORK, WHAT TURNS OUT NOT

7170
04:11:35,120 --> 04:11:37,480
TO BE REPRODUCIBLE IS LARGELY

7171
04:11:37,480 --> 04:11:38,800
BECAUSE OF WHAT I WOULD CALL

7172
04:11:38,800 --> 04:11:39,560
HIDDEN VARIABLES.

7173
04:11:39,560 --> 04:11:42,920
LIKE WE DIDN'T KNOW THIS WAS AN

7174
04:11:42,920 --> 04:11:43,440
IMPORTANT VARIABLE IN AN

7175
04:11:43,440 --> 04:11:43,760
EXPERIMENT.

7176
04:11:43,760 --> 04:11:44,800
WE WEREN'T PAYING THAT CLOSE

7177
04:11:44,800 --> 04:11:46,520
ATTENTION TO THAT ONE, RIGHT?

7178
04:11:46,520 --> 04:11:48,600
THAT USED TO BE GENDER IN

7179
04:11:48,600 --> 04:11:50,440
ANIMALS, FOR EXAMPLE, NOW THAT'S

7180
04:11:50,440 --> 04:11:51,200
PAID ATTENTION TO.

7181
04:11:51,200 --> 04:11:52,320
BUT THERE'S A THOUSAND

7182
04:11:52,320 --> 04:11:52,920
VARIABLES.

7183
04:11:52,920 --> 04:11:55,560
THESE ARE COMPLEX EXPERIMENTS.

7184
04:11:55,560 --> 04:11:56,960
AND WHAT I THINK IS VALUABLE IS

7185
04:11:56,960 --> 04:11:58,840
YOU NEED TO BE ACCOUNTABLE FOR

7186
04:11:58,840 --> 04:11:59,280
EVERY VARIABLE.

7187
04:11:59,280 --> 04:12:00,760
SO LIKE IN THOSE STUDIES

7188
04:12:00,760 --> 04:12:04,080
PUBLISHED IN 2014 ON A.L.S.

7189
04:12:04,080 --> 04:12:05,480
TRIALS, A LOT OF THAT COULD HAVE

7190
04:12:05,480 --> 04:12:07,560
BEEN JUST LITERALLY THEY DIDN'T

7191
04:12:07,560 --> 04:12:09,600
KNOW THAT THAT WAS THE CONDITION

7192
04:12:09,600 --> 04:12:10,280
THEY USED.

7193
04:12:10,280 --> 04:12:12,360
NOW THAT WASN'T THE SAME

7194
04:12:12,360 --> 04:12:14,840
CONDITION THAT THE 2014 PAPER

7195
04:12:14,840 --> 04:12:15,840
DID, IT DOESN'T MEAN THEY

7196
04:12:15,840 --> 04:12:16,920
ACTUALLY WERE RIGHT.

7197
04:12:16,920 --> 04:12:18,120
IT'S JUST THEY USE ADD DIFFERENT

7198
04:12:18,120 --> 04:12:18,400
CONDITION.

7199
04:12:18,400 --> 04:12:21,080
SO THE REPRODUCIBILITY COULD

7200
04:12:21,080 --> 04:12:21,640
HAVE COME FROM A NUMBER OF

7201
04:12:21,640 --> 04:12:21,880
THINGS.

7202
04:12:21,880 --> 04:12:23,000
IT COULD BE STRAIGHT SLOPPINESS,

7203
04:12:23,000 --> 04:12:24,080
COULD HAVE BEEN CHEATING, ALL

7204
04:12:24,080 --> 04:12:25,520
THOSE THINGS, BUT I KNOW JUST

7205
04:12:25,520 --> 04:12:27,280
WITH MY OWN LAB, IT'S NOT THOSE

7206
04:12:27,280 --> 04:12:29,920
THINGS, IT'S JUST -- SOMEONE

7207
04:12:29,920 --> 04:12:31,720
DOES IT A DIFFERENT WAY ONE DAY,

7208
04:12:31,720 --> 04:12:32,760
THEY GET A DIFFERENT RESULT.

7209
04:12:32,760 --> 04:12:33,520
WHY IS THAT DIFFERENT?

7210
04:12:33,520 --> 04:12:34,720
SO WE MIGHT DIG INTO IT.

7211
04:12:34,720 --> 04:12:36,520
BUT I THINK THAT'S ACROSS THE

7212
04:12:36,520 --> 04:12:38,080
BOARD, AND SO JUST NEEDING TO BE

7213
04:12:38,080 --> 04:12:39,920
ACCOUNTABLE FOR AS MANY DETAILS

7214
04:12:39,920 --> 04:12:42,800
OF THE METHODS YOU USE, I WOULD

7215
04:12:42,800 --> 04:12:43,520
SAY IS THE MOST IMPORTANT THING

7216
04:12:43,520 --> 04:12:44,600
WE CAN DO.

7217
04:12:44,600 --> 04:12:44,840
>>MM-HMM.

7218
04:12:44,840 --> 04:12:46,480
I WOULD JUST LIKE TO SAY BRIEFLY

7219
04:12:46,480 --> 04:12:48,040
THAT I ABSOLUTELY AGREE WITH

7220
04:12:48,040 --> 04:12:48,400
THAT.

7221
04:12:48,400 --> 04:12:49,960
THAT'S ONE REASON THAT WE REALLY

7222
04:12:49,960 --> 04:12:52,680
PUSH FOR RIGOR AND TRANSPARENCY

7223
04:12:52,680 --> 04:12:54,200
REPORTING WHAT YOU DID SO OTHER

7224
04:12:54,200 --> 04:12:56,280
PEOPLE CAN INTERPRET IT, INSTEAD

7225
04:12:56,280 --> 04:12:57,680
OF REPRODUCIBILITY, PER SE,

7226
04:12:57,680 --> 04:13:00,920
BECAUSE THERE ARE MULTIPLE

7227
04:13:00,920 --> 04:13:01,920
REASONS, THEY AREN'T ALWAYS YOU

7228
04:13:01,920 --> 04:13:02,840
DID SOMETHING WRONG, THAT

7229
04:13:02,840 --> 04:13:04,000
SOMETHING DIDN'T REPRODUCE.

7230
04:13:04,000 --> 04:13:07,760
SO WE DEEMPHASIZE THAT.

7231
04:13:07,760 --> 04:13:10,120
>>SHI?

7232
04:13:10,120 --> 04:13:14,160
>>TIM, I JUST WANT TO --
OF

7233
04:13:14,160 --> 04:13:17,000
COURSE I -- EVERYTHING YOU SAY

7234
04:13:17,000 --> 04:13:19,000
IS EXACTLY RIGHT.

7235
04:13:19,000 --> 04:13:20,960
AND THE QUESTION IS, OF COURSE,

7236
04:13:20,960 --> 04:13:22,600
WHAT DID YOU DO IN REVIEW?

7237
04:13:22,600 --> 04:13:24,960
ONE OF THE THINGS THAT WE PUSHED

7238
04:13:24,960 --> 04:13:28,360
FOR AND WE WERE PARTIALLY

7239
04:13:28,360 --> 04:13:30,440
SUCCESSFUL IS THE FOCUS ON THE

7240
04:13:30,440 --> 04:13:34,840
KEY SUPPORTING DATA.

7241
04:13:34,840 --> 04:13:35,160
DURING REVIEW.

7242
04:13:35,160 --> 04:13:38,520
BECAUSE IF THAT COMES FROM THE

7243
04:13:38,520 --> 04:13:39,400
LAB, PREVIOUS WORK OF THE LAB,

7244
04:13:39,400 --> 04:13:41,760
THAT'S WHERE YOU COULD REALLY

7245
04:13:41,760 --> 04:13:43,080
EVALUATE IF WORK IS RIGOROUS OR

7246
04:13:43,080 --> 04:13:44,280
NOT.

7247
04:13:44,280 --> 04:13:47,240
WHAT IS BEING PROMISED TO BE

7248
04:13:47,240 --> 04:13:49,640
DONE, IT CAN BE PROMISED, RIGHT?

7249
04:13:49,640 --> 04:13:51,520
AND AS FAR AS, YOU KNOW,

7250
04:13:51,520 --> 04:13:53,040
CONFOUNDING VARIABLES THAT WE

7251
04:13:53,040 --> 04:13:56,120
DON'T CONTROL, OBVIOUSLY

7252
04:13:56,120 --> 04:13:56,760
THAT'S -- YOU KNOW, THAT'S THE

7253
04:13:56,760 --> 04:13:58,160
BREAD AND BUTTER OF SCIENCE, BUT

7254
04:13:58,160 --> 04:14:00,280
THERE ARE MEASURES WE CAN DO TO

7255
04:14:00,280 --> 04:14:01,280
MINIMIZE THAT, RIGHT, AND THAT

7256
04:14:01,280 --> 04:14:07,120
IS BY RANDOMIZING, BY INCLUDING

7257
04:14:07,120 --> 04:14:08,400
SUFFICIENT LARGE SAMPLE SIZES SO

7258
04:14:08,400 --> 04:14:09,920
IF THE VARIABILITY IS JUST A

7259
04:14:09,920 --> 04:14:12,240
RANDOM ONE, IT WILL BE UNDER

7260
04:14:12,240 --> 04:14:12,480
CONTROL.

7261
04:14:12,480 --> 04:14:14,280
>>THANK YOU.

7262
04:14:14,280 --> 04:14:14,880
ONE OF THE THINGS THAT I KNOW

7263
04:14:14,880 --> 04:14:15,720
SOME JOURNALS HAVE ADOPTED,

7264
04:14:15,720 --> 04:14:17,760
WHICH WAS A POSITIVE THING, IS

7265
04:14:17,760 --> 04:14:19,520
JUST THEY INSIST THE METHODS BE

7266
04:14:19,520 --> 04:14:22,720
MUCH MORE EXTENSIVE, THEY'LL

7267
04:14:22,720 --> 04:14:24,440
SAY, LISTEN, YOU HAVE TO SAY

7268
04:14:24,440 --> 04:14:26,200
WHERE YOU GOT EVERY REAGENT

7269
04:14:26,200 --> 04:14:27,040
BECAUSE THAT'S ANOTHER VARIABLE

7270
04:14:27,040 --> 04:14:27,720
THAT COULD CHANGE EVERYTHING.

7271
04:14:27,720 --> 04:14:29,040
YOU KNOW, YOU HAVE TO SAY THE

7272
04:14:29,040 --> 04:14:29,640
TEMPERATURE OF THE EXPERIMENT

7273
04:14:29,640 --> 04:14:31,520
THAT YOU DID.

7274
04:14:31,520 --> 04:14:33,400
THAT'S OFTEN NOT REPORTED.

7275
04:14:33,400 --> 04:14:36,000
SO I'M HAPPY TO LISTEN TO YOU,

7276
04:14:36,000 --> 04:14:37,880
SHAI, I CONSIDER YOU THE

7277
04:14:37,880 --> 04:14:39,520
GODFATHER OF RIGOR, SO --

7278
04:14:39,520 --> 04:14:41,920
>>I'LL HOLD MYSELF BACK
THERE.

7279
04:14:41,920 --> 04:14:42,120
LOUISE?

7280
04:14:42,120 --> 04:14:43,640
>>I JUST WANT TO MAKE A

7281
04:14:43,640 --> 04:14:44,600
STATEMENT, ESPECIALLY ABOUT,

7282
04:14:44,600 --> 04:14:47,560
LIKE, YOU KNOW, THE SEX GENDER

7283
04:14:47,560 --> 04:14:47,880
ISSUE.

7284
04:14:47,880 --> 04:14:49,640
AND IT'S TRUE, A LOT OF TIMES WE

7285
04:14:49,640 --> 04:14:51,160
DON'T KNOW WHAT THE VARIABLE IS,

7286
04:14:51,160 --> 04:14:52,320
WE DON'T PAY ATTENTION TO IT,

7287
04:14:52,320 --> 04:14:54,200
AND THEN WHEN YOU ACTUALLY, YOU

7288
04:14:54,200 --> 04:14:55,960
KNOW, EXAMINE IT, YOU SEE HUGE

7289
04:14:55,960 --> 04:14:56,600
DIFFERENCES.

7290
04:14:56,600 --> 04:15:00,280
I THINK REPORTING IS ONE THING.

7291
04:15:00,280 --> 04:15:02,240
BUT THE STRUCTURE OF THE SPAN,

7292
04:15:02,240 --> 04:15:03,920
FOR EXAMPLE, AND MAYBE WALTER OR

7293
04:15:03,920 --> 04:15:06,960
SOMEBODY CAN TALK ABOUT THAT,

7294
04:15:06,960 --> 04:15:08,880
THEY JUST COMPLETED SPAN ONE,

7295
04:15:08,880 --> 04:15:10,800
WHICH WAS THE SAME SIMILAR

7296
04:15:10,800 --> 04:15:12,880
PROBLEM TO THE A.L.S., IS WHEN

7297
04:15:12,880 --> 04:15:15,120
WE TRY STROKE NEUROPROTECTANTS,

7298
04:15:15,120 --> 04:15:21,560
THAT ONE LAB SAID IT'S

7299
04:15:21,560 --> 04:15:23,320
PROTECTIVE, OTHER LABS WON'T

7300
04:15:23,320 --> 04:15:23,880
FIND IT'S PROTECTIVE.

7301
04:15:23,880 --> 04:15:26,720
SO NIH SET UP A WAY TO DO A VERY

7302
04:15:26,720 --> 04:15:28,600
LARGE, 2500-MICE STUDY IN SIX

7303
04:15:28,600 --> 04:15:32,840
SITES THAT WAS COMPLETELY

7304
04:15:32,840 --> 04:15:33,920
BLINDED, AND THAT IS PROBABLY

7305
04:15:33,920 --> 04:15:34,680
THE BEST WAY TO GO.

7306
04:15:34,680 --> 04:15:36,640
I MEAN, WE HAVE OTHER PROBLEMS

7307
04:15:36,640 --> 04:15:37,640
WITH TRANSLATING IN STROKE,

7308
04:15:37,640 --> 04:15:39,160
WHETHER THEY WORK AT ALL IN

7309
04:15:39,160 --> 04:15:41,640
HUMANS, BUT ONE COMPOUND CAME

7310
04:15:41,640 --> 04:15:43,920
OUT AT ALL SIX SITES AS

7311
04:15:43,920 --> 04:15:44,920
POSITIVE, AND THE OTHERS DID

7312
04:15:44,920 --> 04:15:45,280
NOT.

7313
04:15:45,280 --> 04:15:47,320
SO ALTHOUGH REPRODUCIBILITY MAY

7314
04:15:47,320 --> 04:15:49,320
BE A BIT BORING, IF YOU'RE

7315
04:15:49,320 --> 04:15:51,920
REALLY GOING TO MOVE THINGS NA A

7316
04:15:51,920 --> 04:15:55,680
CLININTOA CLINICAL TRIAL, THEY'O

7317
04:15:55,680 --> 04:15:56,520
BE REPRODUCED.

7318
04:15:56,520 --> 04:15:57,600
BECAUSE IF YOU CAN'T FIND THE

7319
04:15:57,600 --> 04:15:59,080
SAME FINDING IN BALTIMORE THAT

7320
04:15:59,080 --> 04:16:00,600
YOU CAN IN, YOU KNOW, TENNESSEE,

7321
04:16:00,600 --> 04:16:03,600
THEN IT PROBABLY IS NOT A GREAT

7322
04:16:03,600 --> 04:16:05,200
THING TO INVEST A LOT OF MONEY

7323
04:16:05,200 --> 04:16:05,640
IN.

7324
04:16:05,640 --> 04:16:08,040
AND I SOMETIMES SEE EVEN THE

7325
04:16:08,040 --> 04:16:09,600
CLINICAL TRIALS IN STROKE, WE DO

7326
04:16:09,600 --> 04:16:13,520
STILL DO THAT.

7327
04:16:13,520 --> 04:16:14,400
WE DON'T HAVE THIS ROBUST, YOU

7328
04:16:14,400 --> 04:16:16,880
KNOW, RIGOROUS PRE-CLINICAL TO

7329
04:16:16,880 --> 04:16:18,080
CLINICAL TRANSLATION, AND I

7330
04:16:18,080 --> 04:16:20,320
THINK YOU CAN TELL PEOPLE TO DO

7331
04:16:20,320 --> 04:16:22,520
POWER ANALYSIS AND SAY THEY'RE

7332
04:16:22,520 --> 04:16:23,240
RANDOMIZING AND SAY THEY'RE

7333
04:16:23,240 --> 04:16:24,640
DOING ALL THESE THINGS, BUT ARE

7334
04:16:24,640 --> 04:16:26,400
THEY ACTUALLY DOING IT?

7335
04:16:26,400 --> 04:16:27,720
BUT REPRODUCIBILITY IS COSTLY,

7336
04:16:27,720 --> 04:16:30,880
BUT IT'S A LOT LESS COSTLY THAN

7337
04:16:30,880 --> 04:16:31,520
SPENDING $20 MILLION ON A

7338
04:16:31,520 --> 04:16:32,280
CLINICAL TRIAL THAT IS THE NO

7339
04:16:32,280 --> 04:16:36,560
GOING TO WORK.

7340
04:16:36,560 --> 04:16:38,200
>>I THINK I'M GOING TO
CALL IT

7341
04:16:38,200 --> 04:16:40,160
THERE, BUT DO SEND US COMMENTS

7342
04:16:40,160 --> 04:16:41,560
ABOUT THIS IF YOU HAVE THEM.

7343
04:16:41,560 --> 04:16:43,440
YOU CAN SEND THEM TO ME, I'LL

7344
04:16:43,440 --> 04:16:47,320
FORWARD THEM TO SHAI, DEVON,

7345
04:16:47,320 --> 04:16:48,440
WALTER.  BUT I THINK ALL THESE

7346
04:16:48,440 --> 04:16:49,200
COMMENTS HAVE BEEN GREAT.

7347
04:16:49,200 --> 04:16:50,400
WHY DON'T WE HAVE A MOTION,

7348
04:16:50,400 --> 04:16:52,120
AGAIN, THIS IS STILL IN THE

7349
04:16:52,120 --> 04:16:54,120
CONCEPT STAGE, IT'S STILL BEING

7350
04:16:54,120 --> 04:16:55,320
DEVELOPED, AND YOUR COMMENTS

7351
04:16:55,320 --> 04:16:56,880
HAVE BEEN REALLY THOUGHTFUL, I

7352
04:16:56,880 --> 04:16:57,320
THINK.

7353
04:16:57,320 --> 04:16:58,600
WE NEED A MOTION FOR THIS

7354
04:16:58,600 --> 04:17:00,360
CONCEPT TO GO FORWARD OR NOT.

7355
04:17:00,360 --> 04:17:01,440
>>SO MOVED.

7356
04:17:01,440 --> 04:17:03,080
>>OKAY.

7357
04:17:03,080 --> 04:17:04,400
I ASSUME THAT'S GO FORWARD.

7358
04:17:04,400 --> 04:17:05,360
THERE'S A SECOND FROM GINA, AND

7359
04:17:05,360 --> 04:17:12,920
YOU CAN VOTE IN THE CHAT.

7360
04:17:12,920 --> 04:17:15,520
NEXT WE HAVE THREE MORE

7361
04:17:15,520 --> 04:17:16,160
PRESENTATIONS.

7362
04:17:16,160 --> 04:17:18,600
FIRST VICKIE WIDIMORE, PROGRAM

7363
04:17:18,600 --> 04:17:20,000
DIRECTOR IN OUR CHANNELS,

7364
04:17:20,000 --> 04:17:21,720
SYNAPSE AND CIRCUITS, I FORGET

7365
04:17:21,720 --> 04:17:23,160
THE FULL NAME, CLUSTER IS GOING

7366
04:17:23,160 --> 04:17:28,000
TO DISCUSS A REISSUE OF THE

7367
04:17:28,000 --> 04:17:30,800
MECFS CHRONIC FATIGUE SYNDROME

7368
04:17:30,800 --> 04:17:32,120
COLLABORATIVE RESEARCH CENTERS.

7369
04:17:32,120 --> 04:17:33,120
THIS IS A REISSUE.

7370
04:17:33,120 --> 04:17:34,880
WE THOUGHT IT WOULD BE WORTH AT

7371
04:17:34,880 --> 04:17:35,600
LEAST PRESENTING TO YOU SO

7372
04:17:35,600 --> 04:17:37,680
YOU'RE AWARE.

7373
04:17:37,680 --> 04:17:38,360
IS VICKIE THERE?

7374
04:17:38,360 --> 04:17:39,040
THERE SHE IS.

7375
04:17:39,040 --> 04:17:41,280
>>YES, CAN I HAVE MY
SLIDE,

7376
04:17:41,280 --> 04:17:41,600
PLEASE?

7377
04:17:41,600 --> 04:17:42,680
THANK YOU.

7378
04:17:42,680 --> 04:17:45,640
SO YES, WE'RE PRESENTING THE

7379
04:17:45,640 --> 04:17:51,120
CONCEPT TO REISSUE

7380
04:17:51,120 --> 04:17:54,840
RFA-NS-22-019, WHICH IS A RFA, A

7381
04:17:54,840 --> 04:17:57,080
FUNDING ANNOUNCEMENT TO SUPPORT

7382
04:17:57,080 --> 04:17:58,400
COLLABORATIVE RESEARCH CENTERS

7383
04:17:58,400 --> 04:18:05,080
WITH RESEARCH FOCUSED ON MYALGIC

7384
04:18:05,080 --> 04:18:06,040
ENCEPHALOMYELITIS CHRONIC

7385
04:18:06,040 --> 04:18:08,440
FATIGUE SYNDROME OR ME/CFS.

7386
04:18:08,440 --> 04:18:10,680
THE OVER ARCHING GOAL IS TO

7387
04:18:10,680 --> 04:18:11,800
SUPPORT A NETWORK OF CENTERS

7388
04:18:11,800 --> 04:18:12,680
THAT WORK COLLABORATIVELY TO

7389
04:18:12,680 --> 04:18:16,800
DEFINE THE CAUSES OF, DISCOVER

7390
04:18:16,800 --> 04:18:18,800
AND IMPROVE TREEFMENTS OF MECFS

7391
04:18:18,800 --> 04:18:20,680
AND A MORE IMMEDIATE GOAL IS TO

7392
04:18:20,680 --> 04:18:22,840
RAPIDLY ADVANCE SYNERGISTIC

7393
04:18:22,840 --> 04:18:23,680
INTERDISCIPLINARY RESEARCH

7394
04:18:23,680 --> 04:18:25,120
PROGRAMS AND WHILE SERVING AS

7395
04:18:25,120 --> 04:18:28,200
LOCAL RESOURCES AND NATIONAL

7396
04:18:28,200 --> 04:18:30,480
LEADERS IN ME/CFS RESEARCH.

7397
04:18:30,480 --> 04:18:33,000
SO AS THOSE OF WHO HAVE BEEN ON

7398
04:18:33,000 --> 04:18:34,440
COUNCIL MAY KNOW, WE FUNDED

7399
04:18:34,440 --> 04:18:38,920
THREE CENTERS THAT ARE CURRENTLY

7400
04:18:38,920 --> 04:18:40,560
IN NO COST EXTENSION AND FUNDED

7401
04:18:40,560 --> 04:18:44,720
A DATA MANAGEMENT COORDINATING

7402
04:18:44,720 --> 04:18:46,840
CENTER THAT HAS PUT A VERY

7403
04:18:46,840 --> 04:18:49,360
ROBUST DATA SHARING PORTAL IN

7404
04:18:49,360 --> 04:18:53,160
PLACE FOR CHRONIC FATIGUE

7405
04:18:53,160 --> 04:18:53,840
SYNDROME RESEARCH DATA AND SO

7406
04:18:53,840 --> 04:18:55,160
WHAT WE'RE LOOKING TO DO IS

7407
04:18:55,160 --> 04:18:57,440
SOLICIT APPLICATIONS TO SUPPORT

7408
04:18:57,440 --> 04:18:58,000
THREE CENTERS.

7409
04:18:58,000 --> 04:18:59,880
THE DATA MANAGEMENT COORDINATING

7410
04:18:59,880 --> 04:19:03,560
CENTER IS SUPPORTED OFF OF A

7411
04:19:03,560 --> 04:19:06,200
DIFFERENT RFA.

7412
04:19:06,200 --> 04:19:07,080
JUST A COUPLE OF THINGS TO NOTE

7413
04:19:07,080 --> 04:19:08,280
IS THAT THE CURRENTLY FUNDED

7414
04:19:08,280 --> 04:19:10,120
CENTERS HAVE REALLY MADE VERY

7415
04:19:10,120 --> 04:19:12,560
SIGNIFICANT PROGRESS IN

7416
04:19:12,560 --> 04:19:14,400
UNDERSTANDING THE UNDERLYING

7417
04:19:14,400 --> 04:19:16,440
PATHOPHYSIOLOGY OF ME/CFS BUT

7418
04:19:16,440 --> 04:19:17,560
MORE RESEARCH IS NEEDED TO

7419
04:19:17,560 --> 04:19:19,040
REALLY MOVE THIS RESEARCH

7420
04:19:19,040 --> 04:19:20,760
FORWARD SUCH THAT IT CAN MOVE

7421
04:19:20,760 --> 04:19:26,640
INTO CLINICAL TRIALS, AND AS WAS

7422
04:19:26,640 --> 04:19:29,440
ALLOWED IN THE PREVIOUS RFA

7423
04:19:29,440 --> 04:19:32,480
22-019, WE WOULD ALSO ALLOW THE

7424
04:19:32,480 --> 04:19:34,760
CENTERS TO INCLUDE A COHORT OF

7425
04:19:34,760 --> 04:19:39,480
INDIVIDUALS WITH LONG COVID WITH

7426
04:19:39,480 --> 04:19:41,320
POST-ACUTE SEQUELAE OF

7427
04:19:41,320 --> 04:19:47,000
SARS-COV-2 OR LONG COVID AS LONG

7428
04:19:47,000 --> 04:19:49,720
AS RESEARCH IS FOCUSED ON

7429
04:19:49,720 --> 04:19:50,760
OVERLAPPING SYNDROMES BETWEEN

7430
04:19:50,760 --> 04:20:01,840
INDIVIDUALSINDIVIDUALS WITH LOND

7431
04:20:05,240 --> 04:20:05,400
ME/CFS.

7432
04:20:05,400 --> 04:20:07,080
>>I WANT TO MAKE SURE WE
SAVE

7433
04:20:07,080 --> 04:20:07,680
THE COMMENTS IN THE CHAT AFTER

7434
04:20:07,680 --> 04:20:08,040
THE MEETING.

7435
04:20:08,040 --> 04:20:09,880
YOU DON'T HAVE TO ANSWER.

7436
04:20:09,880 --> 04:20:11,120
OKAY.

7437
04:20:11,120 --> 04:20:16,800
QUESTIONS ABOUT THIS RENEWAL?

7438
04:20:16,800 --> 04:20:17,760
DO YOU HAVE YOUR HAND UP,

7439
04:20:17,760 --> 04:20:18,240
LOUISE?

7440
04:20:18,240 --> 04:20:21,320
NO?

7441
04:20:21,320 --> 04:20:22,040
>>SORRY.

7442
04:20:22,040 --> 04:20:23,080
IT WAS STILL HUNG UP.

7443
04:20:23,080 --> 04:20:24,000
>>OKAY.

7444
04:20:24,000 --> 04:20:25,560
THIS WAS A LITTLE BIT MORE OF AN

7445
04:20:25,560 --> 04:20:28,280
FYI, JUST TO LET YOU KNOW THAT

7446
04:20:28,280 --> 04:20:29,400
THESE CENTERS ARE UP.

7447
04:20:29,400 --> 04:20:31,600
WE WANT MORE OF THEM.

7448
04:20:31,600 --> 04:20:33,640
THEY HAVE HAD SOME

7449
04:20:33,640 --> 04:20:35,640
ACCOMPLISHMENTS, ET CETERA.

7450
04:20:35,640 --> 04:20:36,920
ANY OTHER QUESTIONS?

7451
04:20:36,920 --> 04:20:37,120
OKAY.

7452
04:20:37,120 --> 04:20:39,360
I'M GOING TO TRY TO DO A SINGLE

7453
04:20:39,360 --> 04:20:40,800
VOTE AT THE END AS OPPOSED TO

7454
04:20:40,800 --> 04:20:42,240
VOTING AT EVERY SINGLE ONE OF

7455
04:20:42,240 --> 04:20:42,680
THESE.

7456
04:20:42,680 --> 04:20:43,280
OKAY.

7457
04:20:43,280 --> 04:20:48,880
NEXT, WE HAVE AN INITIATIVE ON

7458
04:20:48,880 --> 04:20:52,600
ANOTHER SOMEWHAT COVID-RELATED

7459
04:20:52,600 --> 04:20:56,080
INITIATIVE THAT LUMI ADAMS IS

7460
04:20:56,080 --> 04:20:57,320
GOING TO PRESENT.

7461
04:20:57,320 --> 04:20:58,840
ARE YOU THERE?

7462
04:20:58,840 --> 04:21:00,120
>>YES, THANK YOU.

7463
04:21:00,120 --> 04:21:01,400
MAY I HAVE THE SLIDES?

7464
04:21:01,400 --> 04:21:03,000
THANK YOU SO MUCH.

7465
04:21:03,000 --> 04:21:04,400
SO THE DIVISION OF CLINICAL

7466
04:21:04,400 --> 04:21:06,480
RESEARCH IS PROPOSING A NEW

7467
04:21:06,480 --> 04:21:08,240
CONCEPT ENTITLED UNDERSTANDING

7468
04:21:08,240 --> 04:21:10,240
NEUROLOGICAL EFFECTS OF COVID-19

7469
04:21:10,240 --> 04:21:14,080
AND POST-ACUTE SEQUELAE OF

7470
04:21:14,080 --> 04:21:16,360
SARS-COV-2 INFECTION, OR PASC.

7471
04:21:16,360 --> 04:21:19,680
THE COLEADS OF THIS CONCEPTS ARE

7472
04:21:19,680 --> 04:21:27,000
DR. BARBARA KARP AND MYSELF.

7473
04:21:27,000 --> 04:21:28,960
SO AS PROBABLY MOST OF US KNOW,

7474
04:21:28,960 --> 04:21:30,600
NEUROLOGICAL CONDITIONS ARE

7475
04:21:30,600 --> 04:21:32,360
EXTREMELY COMMON IN PEOPLE

7476
04:21:32,360 --> 04:21:33,800
DIAGNOSED WITH COVID-19.

7477
04:21:33,800 --> 04:21:35,760
FOR EXAMPLE, IT HAS BEEN

7478
04:21:35,760 --> 04:21:38,480
REPORTED THAT MORE THAN 80% OF

7479
04:21:38,480 --> 04:21:39,680
HOSPITALIZED PATIENTS WILL HAVE

7480
04:21:39,680 --> 04:21:42,320
AT LEAST ONE NEUROLOGICAL

7481
04:21:42,320 --> 04:21:44,520
SYMPTOM, LIKE HEADACHES,

7482
04:21:44,520 --> 04:21:47,720
ENCEPHALOPATHY, SEIZURES,

7483
04:21:47,720 --> 04:21:48,280
GUILLAIN-BARRE SYNDROME AND

7484
04:21:48,280 --> 04:21:50,080
STROKE ARE SOME OF THE COMMON

7485
04:21:50,080 --> 04:21:51,000
NEUROLOGICAL MANIFESTATIONS

7486
04:21:51,000 --> 04:21:51,720
DURING THE ACUTE PHASE.

7487
04:21:51,720 --> 04:21:54,040
BUT NOT ONLY THAT, MORE THAN

7488
04:21:54,040 --> 04:21:56,320
HALF OF THE PEOPLE DIAGNOSED

7489
04:21:56,320 --> 04:21:59,080
WITH COVID-19 CONTINUE TO HAVE

7490
04:21:59,080 --> 04:22:00,040
PERSISTENT SYMPTOMS SUCH AS

7491
04:22:00,040 --> 04:22:03,000
BRAIN FOG, NEUROPATHIC PAIN,

7492
04:22:03,000 --> 04:22:05,760
MYALGIA, FATIGUE, DISOUGHT NOME

7493
04:22:05,760 --> 04:22:08,480
YA, MOOD DISORDERS, BEYOND ACUTE

7494
04:22:08,480 --> 04:22:09,240
STATES, AND THAT IS A CONDITION

7495
04:22:09,240 --> 04:22:18,040
THAT'S KNOWN AS PASC OR CLOAK OG

7496
04:22:18,040 --> 04:22:18,640
COVID.

7497
04:22:18,640 --> 04:22:19,680
THERE IS GROWING EVIDENCE THAT

7498
04:22:19,680 --> 04:22:21,680
COVID-19 MAY INCREASE THE RISK

7499
04:22:21,680 --> 04:22:23,200
OF DEVELOPING NEUROLOGICAL

7500
04:22:23,200 --> 04:22:24,640
CONDITIONS LIKE ALZHEIMER'S

7501
04:22:24,640 --> 04:22:25,600
DISEASE, MOVEMENT DISORDERS AND

7502
04:22:25,600 --> 04:22:32,520
EPILEPSY IN THE LONG TERM.

7503
04:22:32,520 --> 04:22:33,800
SO WE ALSO KNOW THERE ARE

7504
04:22:33,800 --> 04:22:35,240
HUNDREDS IF NOT THOUSANDS OF

7505
04:22:35,240 --> 04:22:36,560
ONGOING COVID-RELATED STUDIES

7506
04:22:36,560 --> 04:22:39,840
AROUND THE WORLD, INCLUDING THE

7507
04:22:39,840 --> 04:22:42,800
NIH RECOVER INITIATIVE TO BETTER

7508
04:22:42,800 --> 04:22:44,120
CHARACTERIZE COVID AND PASC

7509
04:22:44,120 --> 04:22:47,640
SYMPTOMS, BUT ALSO TO UNCOVER

7510
04:22:47,640 --> 04:22:49,040
PATHOPHYSIOLOGY INCLUDING LARGER

7511
04:22:49,040 --> 04:22:51,320
SCALE SURVEYS, REVIEW OF LARGE

7512
04:22:51,320 --> 04:22:53,200
ELECTRONIC HEALTH RECORDS,

7513
04:22:53,200 --> 04:22:54,840
PROSPECTIVE COHORT STUDIES

7514
04:22:54,840 --> 04:22:56,120
INCLUDING COLLECTION OF

7515
04:22:56,120 --> 04:23:01,120
BIOSPECIMENS.

7516
04:23:01,120 --> 04:23:03,920
HOWEVER, MECHANISMS UNDERLYING

7517
04:23:03,920 --> 04:23:04,800
NEUROLOGICAL MANIFESTATIONS

7518
04:23:04,800 --> 04:23:07,120
CONTINUES TO BE VERY POORLY

7519
04:23:07,120 --> 04:23:08,320
UNDERSTOOD, AND IT IS A

7520
04:23:08,320 --> 04:23:09,800
BOTTLENECK FOR THE DEVELOPMENT

7521
04:23:09,800 --> 04:23:12,360
OF EFFECTIVE TREATMENTS AND

7522
04:23:12,360 --> 04:23:13,920
PREVENTION.

7523
04:23:13,920 --> 04:23:15,200
OBVIOUSLY COVID RELATED

7524
04:23:15,200 --> 04:23:16,000
MECHANISTIC APPLICATIONS WILL

7525
04:23:16,000 --> 04:23:17,760
CONTINUE TO BE SUBMITTED VIA

7526
04:23:17,760 --> 04:23:20,360
PARENT ANNOUNCEMENTS, HOWEVER,

7527
04:23:20,360 --> 04:23:22,240
MANY OF THESE APPLICATIONS ARE

7528
04:23:22,240 --> 04:23:25,120
NOT RELEVANT TO THE MISSION OF

7529
04:23:25,120 --> 04:23:26,400
NINDS, AND THAT LEADS TO A BIG

7530
04:23:26,400 --> 04:23:29,360
GAP IN RESEARCH FOCUSED ON

7531
04:23:29,360 --> 04:23:31,000
NEUROLOGICAL ASPECTS OF THE

7532
04:23:31,000 --> 04:23:34,760
PANDEMIC.

7533
04:23:34,760 --> 04:23:36,840
SO HERE WE ARE PROPOSING TWO NEW

7534
04:23:36,840 --> 04:23:38,120
RFAs UNDER THIS SAME CONCEPT

7535
04:23:38,120 --> 04:23:41,280
TO BETTER UNDERSTAND

7536
04:23:41,280 --> 04:23:41,920
NEUROPATHOGENESIS OF COVID AND

7537
04:23:41,920 --> 04:23:43,480
PASC.

7538
04:23:43,480 --> 04:23:45,760
MORE SPECIFICALLY, THESE RFAs

7539
04:23:45,760 --> 04:23:49,400
WOULD BE INVITING APPLICATION

7540
04:23:49,400 --> 04:23:51,400
ADDRESSED IN THE MECHANISM

7541
04:23:51,400 --> 04:23:52,440
BIOMARKERS AND PA THROW

7542
04:23:52,440 --> 04:23:55,440
PHYSIOLOGY OF NEUROLOGICAL

7543
04:23:55,440 --> 04:23:56,200
MANIFESTATIONS ASSOCIATED WITH

7544
04:23:56,200 --> 04:23:59,480
COVID AND PASC.

7545
04:23:59,480 --> 04:24:01,880
APPLICATIONS PROPOSING

7546
04:24:01,880 --> 04:24:03,080
SCIENTIFICALLY COMPELLING

7547
04:24:03,080 --> 04:24:03,600
PATHWAYS TO PREVENT THE

7548
04:24:03,600 --> 04:24:05,600
DEVELOPMENT OF PASC OR TO

7549
04:24:05,600 --> 04:24:07,800
ACCELERATE DEVELOPMENT OF

7550
04:24:07,800 --> 04:24:11,480
EFFECTIVE TREATMENTS FOR

7551
04:24:11,480 --> 04:24:12,280
PASC-RELATED NEUROLOGICAL

7552
04:24:12,280 --> 04:24:13,240
COMPLICATIONS ARE OF PARTICULAR

7553
04:24:13,240 --> 04:24:18,600
INTEREST FOR OUR NEW CONCEPT.

7554
04:24:18,600 --> 04:24:20,120
HOWEVER, INTERVENTIONAL TRIAL

7555
04:24:20,120 --> 04:24:22,120
TESTING SAFETY AND EFFICACY WILL

7556
04:24:22,120 --> 04:24:23,960
NOT BE ALLOWED AT THIS TIME.

7557
04:24:23,960 --> 04:24:29,320
WE ARE PROPOSING R01 AND R21 AS

7558
04:24:29,320 --> 04:24:31,640
MECHANISMS FOR FUNDING WITH TWO

7559
04:24:31,640 --> 04:24:32,840
SEPARATE RECEIPT DATES.

7560
04:24:32,840 --> 04:24:34,840
AND WE WOULD LIKE TO REQUEST A

7561
04:24:34,840 --> 04:24:36,760
SPECIAL EMPHASIS PANEL TO BRING

7562
04:24:36,760 --> 04:24:37,920
THE APPROPRIATE EXPERTISE TO THE

7563
04:24:37,920 --> 04:24:39,360
REVIEW.

7564
04:24:39,360 --> 04:24:42,400
WE REALLY BELIEVE THAT NIH

7565
04:24:42,400 --> 04:24:43,920
HAS -- NINDS HAS A HUGE

7566
04:24:43,920 --> 04:24:47,600
POTENTIAL TO MAKE AN IMPACTFUL

7567
04:24:47,600 --> 04:24:50,560
PROGRESS IN THE AREA AND WITH

7568
04:24:50,560 --> 04:24:52,360
THE PURPOSE OF THIS TO OUR

7569
04:24:52,360 --> 04:24:52,560
RFAs.

7570
04:24:52,560 --> 04:24:55,920
WITH THAT, I WOULD LOVE TO TAKE

7571
04:24:55,920 --> 04:24:56,520
QUESTIONS OR COMMENTS.

7572
04:24:56,520 --> 04:24:59,560
>>THANKS, LUMY.

7573
04:24:59,560 --> 04:25:00,280
GOOD PRESENTATION.

7574
04:25:00,280 --> 04:25:06,560
ANY QUESTIONS FOR HER?

7575
04:25:06,560 --> 04:25:07,960
>>I JUST WANT TO MOVE
THAT

7576
04:25:07,960 --> 04:25:08,160
WE --

7577
04:25:08,160 --> 04:25:09,760
>>OKAY.

7578
04:25:09,760 --> 04:25:13,800
SAVE THE MOTION FOR A LITTLE.

7579
04:25:13,800 --> 04:25:15,560
I JUST HATE DOING A MOTION ON

7580
04:25:15,560 --> 04:25:17,760
EVERY SINGLE THING.

7581
04:25:17,760 --> 04:25:18,360
OKAY.

7582
04:25:18,360 --> 04:25:19,720
AGAIN, ANY OTHER QUESTIONS ABOUT

7583
04:25:19,720 --> 04:25:21,440
THAT?

7584
04:25:21,440 --> 04:25:21,640
OKAY.

7585
04:25:21,640 --> 04:25:24,240
THANKS.

7586
04:25:24,240 --> 04:25:27,400
AND THE LAST CONCEPT IS FROM

7587
04:25:27,400 --> 04:25:28,920
STEVE KORN, THE HEAD OF OUR

7588
04:25:28,920 --> 04:25:30,120
TRAINING OFFICE WHO YOU'VE HEARD

7589
04:25:30,120 --> 04:25:30,640
FROM BEFORE.

7590
04:25:30,640 --> 04:25:32,880
I SEE HIM STANDING UP THERE.

7591
04:25:32,880 --> 04:25:35,320
>>I WANT TO APOLOGIZE,
I'VE GOT

7592
04:25:35,320 --> 04:25:37,040
TWO CAMERAS IN MY OFFICE AND I

7593
04:25:37,040 --> 04:25:38,600
CAN'T CONTROL WHICH ONE IS

7594
04:25:38,600 --> 04:25:41,280
LOOKING AT ME.

7595
04:25:41,280 --> 04:25:43,880
>>IT'S GOOD TO SEE YOU
FROM A

7596
04:25:43,880 --> 04:25:44,480
DIFFERENT PERSPECTIVE.

7597
04:25:44,480 --> 04:25:46,360
>>YOU GET A PROFILE.

7598
04:25:46,360 --> 04:25:47,960
SO THANKS, THIS IS THE END FOR

7599
04:25:47,960 --> 04:25:48,720
TODAY.

7600
04:25:48,720 --> 04:25:49,920
AND I WANT TO TALK TO YOU ABOUT

7601
04:25:49,920 --> 04:25:53,880
A NEW INITIATIVE FOR WORKFORCE

7602
04:25:53,880 --> 04:25:55,840
DEVELOPMENT, AND THIS IS TO

7603
04:25:55,840 --> 04:25:59,080
DEVELOP AN EMERGENCY MEDICINE

7604
04:25:59,080 --> 04:26:01,720
CLINICCLINICIAN-SCIENTIST WORKF.

7605
04:26:01,720 --> 04:26:02,800
AND IF WE CAN GO TO THE NEXT

7606
04:26:02,800 --> 04:26:06,520
SLIDE, THERE'S A TERRIFIC NEED

7607
04:26:06,520 --> 04:26:07,720
FOR EMERGENCY MEDICINE

7608
04:26:07,720 --> 04:26:08,880
RESEARCHERS.

7609
04:26:08,880 --> 04:26:09,680
THEY'RE ON THE FRONT LINE OF

7610
04:26:09,680 --> 04:26:11,240
LOTS OF CONDITIONS THAT ENTER

7611
04:26:11,240 --> 04:26:13,960
THE HOSPITAL.

7612
04:26:13,960 --> 04:26:15,760
I HAVE SOME NUMBERS HERE, YOU

7613
04:26:15,760 --> 04:26:19,000
CAN ALL LOOK ON  LOOK AT THE NUI

7614
04:26:19,000 --> 04:26:20,520
WON'T READ THEM TO YOU, BUT A

7615
04:26:20,520 --> 04:26:21,120
LARGE NUMBER OF PEOPLE GOING

7616
04:26:21,120 --> 04:26:23,600
INTO THE EMERGENCY ROOM GO IN

7617
04:26:23,600 --> 04:26:24,800
WITH NEUROLOGICAL COMPLAINTS OR

7618
04:26:24,800 --> 04:26:27,440
SERIOUS CONDITIONS, AND I'LL

7619
04:26:27,440 --> 04:26:31,800
JUST POINT OUT ONE NUMBER TO

7620
04:26:31,800 --> 04:26:32,920
YOU, WHICH IS A LITTLE BIT

7621
04:26:32,920 --> 04:26:35,200
SKEWED GIVEN THAT IT'S 2022, BUT

7622
04:26:35,200 --> 04:26:37,520
NINDS MADE EIGHT GRANT AWARDS TO

7623
04:26:37,520 --> 04:26:39,800
EMERGENCY MEDICINE CLINICIANS IN

7624
04:26:39,800 --> 04:26:44,160
A YEAR.

7625
04:26:44,160 --> 04:26:46,040
SO WE'RE REALLY IN NEED OF MORE

7626
04:26:46,040 --> 04:26:47,600
EMERGENCY MEDICINE CLINICIANS TO

7627
04:26:47,600 --> 04:26:48,480
DO RESEARCH.

7628
04:26:48,480 --> 04:26:52,680
MOST OF THE RESEARCH THEY END UP

7629
04:26:52,680 --> 04:26:53,560
DOING IS CLINICAL RESEARCH,

7630
04:26:53,560 --> 04:26:54,520
DEALING DIRECTLY WITH THE

7631
04:26:54,520 --> 04:26:54,760
PATIENTS.

7632
04:26:54,760 --> 04:26:57,000
YOU CAN SEE THE NUMBERS BELOW

7633
04:26:57,000 --> 04:27:00,360
JUST FOR CONTEXT, HOW MANY MORE

7634
04:27:00,360 --> 04:27:06,040
NEWERNEUROLOGISTS ARE GETTING GS

7635
04:27:06,040 --> 04:27:07,360
THAN EMERGENCY MEDICINE

7636
04:27:07,360 --> 04:27:09,880
CLINICIANS, JUST TO GIVE YOU

7637
04:27:09,880 --> 04:27:10,200
SCOPE.

7638
04:27:10,200 --> 04:27:10,640
NEXT SLIDE.

7639
04:27:10,640 --> 04:27:14,400
SO THE WAY WE LIKE TO DO THIS IS

7640
04:27:14,400 --> 04:27:15,680
WITH A NATIONAL PROGRAM THAT'S

7641
04:27:15,680 --> 04:27:16,880
MODELED AFTER TWO OTHER

7642
04:27:16,880 --> 04:27:17,880
SUCCESSFUL PROGRAMS FOR

7643
04:27:17,880 --> 04:27:20,840
WORKFORCE DEVELOP:  ONE IS FOR

7644
04:27:20,840 --> 04:27:22,880
NEUROSURGEONS AND ONE IS FOR

7645
04:27:22,880 --> 04:27:24,200
PEDIATRIC NEUROLOGISTS.

7646
04:27:24,200 --> 04:27:27,280
AND YOU ACTUALLY HEARD EARLIER

7647
04:27:27,280 --> 04:27:29,040
TODAY THAT HEAL IS USING THE

7648
04:27:29,040 --> 04:27:30,240
SAME MODEL TO DEVELOP THEIR

7649
04:27:30,240 --> 04:27:32,400
WORKFORCE.

7650
04:27:32,400 --> 04:27:36,160
AND TO GIVE YOU AP IDEA -- THESE

7651
04:27:36,160 --> 04:27:38,120
PROGRAMS ARE VERY SUCCESSFUL,

7652
04:27:38,120 --> 04:27:40,760
AND WHAT REALLY LEADS TO THE

7653
04:27:40,760 --> 04:27:43,040
SUCCESS IS THAT THEY'RE NATIONAL

7654
04:27:43,040 --> 04:27:45,360
PROGRAMS THAT DRAW FROM THE

7655
04:27:45,360 --> 04:27:46,280
ENTIRE COUNTRY, THAT DRAW FROM

7656
04:27:46,280 --> 04:27:48,440
THE BEST PEOPLE IN THE ENTIRE

7657
04:27:48,440 --> 04:27:50,520
COUNTRY, AND THEY INVOLVE THE

7658
04:27:50,520 --> 04:27:53,280
COMMUNITIES, NOT JUST A

7659
04:27:53,280 --> 04:28:00,480
DEPARTMENT, AND  AND A FEW SUPPG

7660
04:28:00,480 --> 04:28:00,720
SCHOLARS.

7661
04:28:00,720 --> 04:28:02,120
SO AS YOU CAN SEE THERE ARE

7662
04:28:02,120 --> 04:28:03,480
THREE LEVELS OF SUCCESS FOR

7663
04:28:03,480 --> 04:28:04,320
THESE PROGRAMS.

7664
04:28:04,320 --> 04:28:07,640
THE FIRST IS THE SCHOLARS THAT

7665
04:28:07,640 --> 04:28:09,280
ARE BEING SUPPORTED, IN BOTH OF

7666
04:28:09,280 --> 04:28:11,920
THESE PROGRAMS ARE OVER 80% HAVE

7667
04:28:11,920 --> 04:28:12,480
RECEIVED MAJOR FUNDING AFTER

7668
04:28:12,480 --> 04:28:14,560
GOING THROUGH THESE PROGRAMS.

7669
04:28:14,560 --> 04:28:17,920
THE SECOND LEVEL OF SUCCESS IS

7670
04:28:17,920 --> 04:28:19,520
THAT EVEN PEOPLE WHO APPLY TO

7671
04:28:19,520 --> 04:28:20,240
THE PROGRAMS AND ARE NOT FUNDED

7672
04:28:20,240 --> 04:28:26,040
ARE DOING VERY WELL, BECAUSE THE

7673
04:28:26,040 --> 04:28:27,880
PROGRAMS PROVIDE AN ENVIRONMENT,

7674
04:28:27,880 --> 04:28:31,000
A COMMUNITY, A MENTORING NETWORK

7675
04:28:31,000 --> 04:28:33,520
FOR EVERYBODY, NOT JUST FOR

7676
04:28:33,520 --> 04:28:34,480
THOSE THAT ARE FUNDED.

7677
04:28:34,480 --> 04:28:36,560
AND THEN THE THIRD LEVEL WHICH

7678
04:28:36,560 --> 04:28:37,520
REALLY ONE PROGRAM THAT'S OLD

7679
04:28:37,520 --> 04:28:41,360
ENOUGH TO TAKE A LOOK AT IT, BUT

7680
04:28:41,360 --> 04:28:43,520
IN NEUROSURGERY, THERE'S WHAT WE

7681
04:28:43,520 --> 04:28:44,720
CALL -- THERE'S WHAT WE'VE

7682
04:28:44,720 --> 04:28:46,560
CALLED THE KNOCK-ON EFFECT,

7683
04:28:46,560 --> 04:28:48,520
WHERE IT'S HAD A FAR GREATER

7684
04:28:48,520 --> 04:28:50,080
REACH THAN JUST THE PEOPLE THAT

7685
04:28:50,080 --> 04:28:52,000
HAVE BEEN INVOLVED IN THE

7686
04:28:52,000 --> 04:28:55,880
PROGRAM, AND THAT'S BECAUSE SOME

7687
04:28:55,880 --> 04:28:56,960
OF THE PEOPLE RUNNING THE

7688
04:28:56,960 --> 04:28:58,760
PROGRAM, THE FACULTY, ARE --

7689
04:28:58,760 --> 04:29:00,600
THERE'S A HUGE NUMBER OF

7690
04:29:00,600 --> 04:29:02,680
FACULTY, 60, 70, 80 PEOPLE

7691
04:29:02,680 --> 04:29:04,760
INVOLVED FROM THE COMMUNITY THAT

7692
04:29:04,760 --> 04:29:05,640
ARE INVOLVED IN RUNNING THESE

7693
04:29:05,640 --> 04:29:07,920
PROGRAMS.

7694
04:29:07,920 --> 04:29:12,920
AND WHAT IT DOES IS IT ENERGIZES

7695
04:29:12,920 --> 04:29:13,880
EVERYBODY TO GET INVOLVED IN

7696
04:29:13,880 --> 04:29:17,600
DOING MORE RESEARCH.

7697
04:29:17,600 --> 04:29:20,040
SO WE CAN GO TO THE NEXT SLIDE.

7698
04:29:20,040 --> 04:29:22,160
SO SOME OF THE FUNDAMENTAL

7699
04:29:22,160 --> 04:29:23,240
FEATURES, THERE'S JUST ONE

7700
04:29:23,240 --> 04:29:26,120
PROGRAM RUN BY ONE OR MORE

7701
04:29:26,120 --> 04:29:27,200
PIs.

7702
04:29:27,200 --> 04:29:28,760
THERE'S A NATIONAL ADVISORY

7703
04:29:28,760 --> 04:29:29,840
COMMITTEE WHICH IS REALLY THE

7704
04:29:29,840 --> 04:29:30,840
GROUP THAT RUNS THE PROGRAM,

7705
04:29:30,840 --> 04:29:32,640
IT'S NOT RUN BY A PI, IT'S RUN

7706
04:29:32,640 --> 04:29:35,480
BY A GROUP OF PEOPLE.

7707
04:29:35,480 --> 04:29:38,880
AND THIS COMMITTEE IS

7708
04:29:38,880 --> 04:29:39,760
DIVERSIFIED IN ALL DIFFERENT

7709
04:29:39,760 --> 04:29:40,920
KINDS OF WAYS.

7710
04:29:40,920 --> 04:29:41,720
YOU CAN SEE SOME OF THE WAYS

7711
04:29:41,720 --> 04:29:42,800
I'VE PUT UP ON THE SCREEN.

7712
04:29:42,800 --> 04:29:46,400
BUT THE IDEA IS TO MAKE THIS

7713
04:29:46,400 --> 04:29:48,400
OPEN TO EVERYBODY AND TO

7714
04:29:48,400 --> 04:29:51,240
ELIMINATE BIAS THAT MIGHT BE

7715
04:29:51,240 --> 04:29:56,040
BASED ON INSTITUTION OR TRAINING

7716
04:29:56,040 --> 04:29:59,320
OR THE RESEARCH SUBJECT.

7717
04:29:59,320 --> 04:30:00,760
YOU SELECT FROM THE BEST CANNED

7718
04:30:00,760 --> 04:30:05,600
TAITCANDIDATES IN THE COUNTRY, D

7719
04:30:05,600 --> 04:30:07,760
IT'S COMPETITIVE, THEY'RE NOT

7720
04:30:07,760 --> 04:30:08,520
APPLYING TO NIH, THEY'RE

7721
04:30:08,520 --> 04:30:11,160
APPLYING TO A PROGRAM WHERE

7722
04:30:11,160 --> 04:30:13,320
COMMUNITY ARE THE ONES SELECTING

7723
04:30:13,320 --> 04:30:17,440
THE BEST PEOPLE.

7724
04:30:17,440 --> 04:30:18,920
THE PROGRAM PROVIDES SITE VISITS

7725
04:30:18,920 --> 04:30:23,960
AND WEBINARS AND THEY HAVE

7726
04:30:23,960 --> 04:30:25,160
STRUCTURED EFFORTS TO ENHANCE

7727
04:30:25,160 --> 04:30:29,680
DIVERSITY WITHIN THE SPECIALTY.

7728
04:30:29,680 --> 04:30:31,000
THERE'S AN ANNUAL MEETING FOR

7729
04:30:31,000 --> 04:30:32,760
EACH OF THESE GROUPS THAT

7730
04:30:32,760 --> 04:30:36,120
PROMOTES COMMUNITY BUILDING,

7731
04:30:36,120 --> 04:30:37,400
WHICH IS A HUGE PART OF THESE

7732
04:30:37,400 --> 04:30:37,680
PROGRAMS.

7733
04:30:37,680 --> 04:30:39,000
IT JUST GETS THE ENTIRE

7734
04:30:39,000 --> 04:30:39,640
COMMUNITY INVOLVED.

7735
04:30:39,640 --> 04:30:41,480
AND REALLY WHAT IT DOES IS IT

7736
04:30:41,480 --> 04:30:43,600
MAKES THE PIs AND PROGRAM

7737
04:30:43,600 --> 04:30:46,120
ACCOUNTABLE TO THE COMMUNITY,

7738
04:30:46,120 --> 04:30:52,040
NOT TO THEMSELVES, REALLY.

7739
04:30:52,040 --> 04:30:53,600
AND AGAIN, THE FIRST GOAL IS TO

7740
04:30:53,600 --> 04:30:55,560
GET THE SCHOLARS TO FUNDING, BUT

7741
04:30:55,560 --> 04:30:57,840
A SECONDARY GOAL IS TO GET

7742
04:30:57,840 --> 04:31:02,360
EVERYBODY INVOLVED IN FUNDING.

7743
04:31:02,360 --> 04:31:04,880
SO SPECIFIC TO THIS PROGRAM, WE

7744
04:31:04,880 --> 04:31:11,760
ARE GOING TO RUN IN, NIDA AND

7745
04:31:11,760 --> 04:31:16,920
NIA HAVE SIGNED ON AND MAKE

7746
04:31:16,920 --> 04:31:20,200
TRIBUTE.

7747
04:31:20,200 --> 04:31:22,600
THIS WOULD BE A STANDARD

7748
04:31:22,600 --> 04:31:24,120
INSTITUTIONAL PROGRAM THAT'S

7749
04:31:24,120 --> 04:31:26,000
MADE FOR THESE EMERGENCY

7750
04:31:26,000 --> 04:31:28,960
MEDICINE CLINICIANS IN THEIR

7751
04:31:28,960 --> 04:31:29,800
CIRCUMSTANCES, SO THEY'D GET

7752
04:31:29,800 --> 04:31:37,720
THREE YEARS OF SUPPORT, 75%

7753
04:31:37,720 --> 04:31:39,360
REQUIRED EFFORT, AND WE WOULD

7754
04:31:39,360 --> 04:31:40,560
REQUIRE ANYBODY FUNDED BY THIS

7755
04:31:40,560 --> 04:31:43,440
AWARD IS GIVEN AT LEAST 50%

7756
04:31:43,440 --> 04:31:45,720
PROTECTED TIME FOR RESEARCH FOR

7757
04:31:45,720 --> 04:31:47,360
A SUBSEQUENT TWO-YEAR PERIOD TO

7758
04:31:47,360 --> 04:31:49,000
GET THEM TIME TO GET FUNDING IF

7759
04:31:49,000 --> 04:31:49,800
THEY HAVEN'T ALREADY.

7760
04:31:49,800 --> 04:31:50,880
THAT'S A REQUIREMENT THAT THE

7761
04:31:50,880 --> 04:31:54,920
CHAIR HAS TO PROMISE WITH

7762
04:31:54,920 --> 04:31:55,600
INSTITUTION SIGN-ON.

7763
04:31:55,600 --> 04:31:59,320
A LITTLE BIT OF SPECIFICITY,

7764
04:31:59,320 --> 04:32:00,760
BECAUSE OF THE KINDS OF RESEARCH

7765
04:32:00,760 --> 04:32:02,040
EMERGENCY MEDICINE CLINICIANS

7766
04:32:02,040 --> 04:32:07,960
ARE LIKELY TO DO, WHICH IS

7767
04:32:07,960 --> 04:32:09,040
HEAVILY WEIGHTED TOWARDS

7768
04:32:09,040 --> 04:32:10,160
CLINICAL RESEARCH AND CLINICAL

7769
04:32:10,160 --> 04:32:11,880
TRIALS, WE WOULD REQUIRE

7770
04:32:11,880 --> 04:32:14,440
CLINICAL TRIAL EXPERTISE, AND I

7771
04:32:14,440 --> 04:32:16,840
FORGOT TO PUT ON THIS SLIDE BUT

7772
04:32:16,840 --> 04:32:18,680
WOULD ALSO REQUIRE EXPERTISE IN

7773
04:32:18,680 --> 04:32:22,280
ETHICS ON THIS COMMITTEE.

7774
04:32:22,280 --> 04:32:24,080
AND THE MEASURES ARE WHAT I

7775
04:32:24,080 --> 04:32:26,080
TALKED ABOUT BEFORE, THE SUCCESS

7776
04:32:26,080 --> 04:32:28,920
IS MEASURED BY, NUMBER ONE, THE

7777
04:32:28,920 --> 04:32:30,560
SCHOLARS GETTING FUNDED, NUMBER

7778
04:32:30,560 --> 04:32:31,680
TWO, EVERYBODY ELSE INVOFERLED

7779
04:32:31,680 --> 04:32:33,600
GETTING FUNDED, AND NUMBER

7780
04:32:33,600 --> 04:32:35,600
THREE, THE ENTIRE COMMUNITY

7781
04:32:35,600 --> 04:32:36,320
INCREASING THEIR FUNDING.

7782
04:32:36,320 --> 04:32:38,040
AND THE GOAL OF A PROGRAM LIKE

7783
04:32:38,040 --> 04:32:39,920
THIS IS TO EVENTUALLY CREATE A

7784
04:32:39,920 --> 04:32:41,400
SELF-SUSTAINING ENTITY WHERE

7785
04:32:41,400 --> 04:32:43,640
THEY DON'T NEED SPECIAL PROGRAMS

7786
04:32:43,640 --> 04:32:45,960
ANYMORE, THEY'RE JUST UP AND

7787
04:32:45,960 --> 04:32:46,720
RUNNING.

7788
04:32:46,720 --> 04:32:49,040
SO I'LL STOP WITH THAT, TAKE ANY

7789
04:32:49,040 --> 04:32:49,880
QUESTIONS IF THERE ARE ANY.

7790
04:32:49,880 --> 04:32:51,080
>>OKAY.

7791
04:32:51,080 --> 04:32:52,120
COULD WE TAKE DOWN THE SLIDE.

7792
04:32:52,120 --> 04:32:57,160
ANY QUESTIONS FOR STEVE?

7793
04:32:57,160 --> 04:32:57,960
TIM?

7794
04:32:57,960 --> 04:32:59,280
>>THANK YOU.

7795
04:32:59,280 --> 04:33:01,120
I'M NOT A PHYSICIAN BUT I'M

7796
04:33:01,120 --> 04:33:03,640
SURROUNDED BY THEM.

7797
04:33:03,640 --> 04:33:05,120
THERE'S DOZENS OF CLINICAL

7798
04:33:05,120 --> 04:33:06,680
DEPARTMENTS AROUND ME AND I'VE

7799
04:33:06,680 --> 04:33:08,200
ALWAYS WONDERED WHAT MOTIVATES

7800
04:33:08,200 --> 04:33:09,880
THE CLINICAL CHAIR TO HAVE

7801
04:33:09,880 --> 04:33:12,400
PHYSICIANS THAT COULD BE EARNING

7802
04:33:12,400 --> 04:33:14,480
CLINICAL DOLLARS DOING RESEARCH,

7803
04:33:14,480 --> 04:33:16,160
WHERE THEY CLEARLY ARE BRINGING

7804
04:33:16,160 --> 04:33:17,160
ESSENTIALLY THEY'RE COSTING THE

7805
04:33:17,160 --> 04:33:18,200
PLACE MONEY BECAUSE RESEARCH

7806
04:33:18,200 --> 04:33:19,480
COSTS MONEY, IT DOESN'T MAKE

7807
04:33:19,480 --> 04:33:20,560
MONEY FOR THEM.

7808
04:33:20,560 --> 04:33:22,080
AND MY CONCLUSION HAS ALWAYS

7809
04:33:22,080 --> 04:33:23,400
BEEN, IT'S SORT OF BRAGGING

7810
04:33:23,400 --> 04:33:25,640
RIGHTS, LIKE THEY LIKE HAVING

7811
04:33:25,640 --> 04:33:28,240
SCHOLARSHIP, IT RAISES THEIR

7812
04:33:28,240 --> 04:33:29,080
RANKINGS, THEY'RE MORE

7813
04:33:29,080 --> 04:33:30,480
ATTRACTIVE, AND YOU KNOW,

7814
04:33:30,480 --> 04:33:31,880
CLEARLY THAT -- AND I'VE NEVER

7815
04:33:31,880 --> 04:33:33,080
SEEN ANY RESEARCH IN AN

7816
04:33:33,080 --> 04:33:36,360
EMERGENCY MEDICINE DEPARTMENT.

7817
04:33:36,360 --> 04:33:37,120
CERTAINLY IT'S NOT LOCAL HERE

7818
04:33:37,120 --> 04:33:39,480
WHERE I AM IN NEW YORK CITY, I

7819
04:33:39,480 --> 04:33:40,440
DON'T SEE THAT.

7820
04:33:40,440 --> 04:33:42,640
SO IT SEEMS LIKE THERE HAS TO BE

7821
04:33:42,640 --> 04:33:43,280
A CULTURAL SHIFT, LIKE YOU HAVE

7822
04:33:43,280 --> 04:33:44,760
TO MAKE IT SUCH THAT THE CHAIRS

7823
04:33:44,760 --> 04:33:45,800
WILL FEEL LIKE THEY HAVE

7824
04:33:45,800 --> 04:33:47,440
BRAGGING RIGHTS WHEN THEY HAVE

7825
04:33:47,440 --> 04:33:48,040
THESE THINGS THERE.

7826
04:33:48,040 --> 04:33:50,640
AND I THINK ONCE THAT'S THERE,

7827
04:33:50,640 --> 04:33:51,880
THEN THEY'LL OPEN THE DOORS UP

7828
04:33:51,880 --> 04:33:53,800
AND ALLOW THESE PEOPLE TO DO IT.

7829
04:33:53,800 --> 04:33:55,080
BUT UNTIL THEN, THEY PROBABLY

7830
04:33:55,080 --> 04:33:56,320
WON'T ALLOW THEM TO.

7831
04:33:56,320 --> 04:34:00,720
>>SO LET ME -- I'VE GOT
TWO

7832
04:34:00,720 --> 04:34:04,000
ANECDOTAL WAYS TO TALK ABOUT

7833
04:34:04,000 --> 04:34:04,880
THAT, TIM.

7834
04:34:04,880 --> 04:34:07,840
NUMBER ONE, THIS ABSOLUTELY

7835
04:34:07,840 --> 04:34:14,600
RELIES ON PRIDE.

7836
04:34:14,600 --> 04:34:16,240
BECAUSE AT BEST, IF THE

7837
04:34:16,240 --> 04:34:19,960
COMMUNITY ISN'T INTERESTED, AT

7838
04:34:19,960 --> 04:34:21,320
BEST WE'RE GOING TO HAVE 15 MORE

7839
04:34:21,320 --> 04:34:22,280
PEOPLE DOING RESEARCH.

7840
04:34:22,280 --> 04:34:24,800
THE GOAL IS NOT TO JUST HAVE 15

7841
04:34:24,800 --> 04:34:26,160
MORE PEOPLE DOING RESEARCH, THE

7842
04:34:26,160 --> 04:34:27,480
GOAL IS TO GET THE WHOLE

7843
04:34:27,480 --> 04:34:28,560
COMMUNITY TO EMBRACE THE NEED

7844
04:34:28,560 --> 04:34:31,240
FOR RESEARCH IN THEIR SPECIALTY.

7845
04:34:31,240 --> 04:34:33,840
AND WHAT DOES THAT IS WHAT YOU

7846
04:34:33,840 --> 04:34:34,160
SAID.

7847
04:34:34,160 --> 04:34:37,320
YOU KNOW, YOU CALL IT BRAGGING

7848
04:34:37,320 --> 04:34:38,560
RIGHTS, BUT THEY WANT TO BE A

7849
04:34:38,560 --> 04:34:40,520
PLAYER IN THIS NEW ENDEAVOR OF

7850
04:34:40,520 --> 04:34:43,520
DOING RESEARCH TO SOLVE

7851
04:34:43,520 --> 04:34:43,760
PROBLEMS.

7852
04:34:43,760 --> 04:34:45,320
THE OTHER THING I CAN SAY TO

7853
04:34:45,320 --> 04:34:46,240
THAT IS WHEN I WAS DOING MY OWN

7854
04:34:46,240 --> 04:34:47,360
LITTLE BIT OF RESEARCH AND

7855
04:34:47,360 --> 04:34:50,560
LOOKING AT WEBSITES, EVERY

7856
04:34:50,560 --> 04:34:53,160
EMERGENCY ME SIN DEPARTMENT THAT

7857
04:34:53,160 --> 04:34:57,680
I LOOKED AT JUST ON THE

7858
04:34:57,680 --> 04:34:59,760
INTERNET, THEY LED WITH, "WE'RE

7859
04:34:59,760 --> 04:35:02,240
A GREAT RESEARCH DEPARTMENT.

7860
04:35:02,240 --> 04:35:04,040
COME DO EMERGENCY MEDICINE

7861
04:35:04,040 --> 04:35:04,480
HERE."

7862
04:35:04,480 --> 04:35:05,680
AND, YOU KNOW, THAT KIND OF MADE

7863
04:35:05,680 --> 04:35:07,760
ME THINK, WELL, WHY DO WE NEED

7864
04:35:07,760 --> 04:35:09,480
THIS IF THERE ARE ALWAYS SO MANY

7865
04:35:09,480 --> 04:35:11,720
GREAT DEPARTMENTS OUT THERE?

7866
04:35:11,720 --> 04:35:14,160
BUT EMERGENCY MEDICINE SEEMS TO

7867
04:35:14,160 --> 04:35:19,520
WANT THIS.

7868
04:35:19,520 --> 04:35:20,840
AND, YOU KNOW, WE'LL SEE WHAT

7869
04:35:20,840 --> 04:35:21,080
HAPPENS.

7870
04:35:21,080 --> 04:35:22,040
>>I'M GLAD TO HEAR IT.

7871
04:35:22,040 --> 04:35:22,840
THANK YOU, STEVE.

7872
04:35:22,840 --> 04:35:24,360
>>OKAY.

7873
04:35:24,360 --> 04:35:25,720
SAMEER?

7874
04:35:25,720 --> 04:35:27,200
>>THANKS, STEVE.

7875
04:35:27,200 --> 04:35:28,120
LOVE THAT PRESENTATION.

7876
04:35:28,120 --> 04:35:31,840
REAL QUICK, I JUST WILL REPLY TO

7877
04:35:31,840 --> 04:35:33,440
TIM, THERE'S TWO ACTUAL

7878
04:35:33,440 --> 04:35:34,880
NEUROLOGY CHAIRS HERE, SO WE'LL

7879
04:35:34,880 --> 04:35:36,880
SEE WHAT THEY THINK.

7880
04:35:36,880 --> 04:35:40,880
I AM NOT A CHAIR, BUT TO ANSWER

7881
04:35:40,880 --> 04:35:42,680
YOUR QUESTION, SOME OF IT, YEAH,

7882
04:35:42,680 --> 04:35:44,480
IS BRAGGING RIGHTS, BUT

7883
04:35:44,480 --> 04:35:45,800
HONESTLY, DEPARTMENT CHAIRS ARE

7884
04:35:45,800 --> 04:35:47,440
THEMSELVES ACADEMICIANS, SO, YOU

7885
04:35:47,440 --> 04:35:49,160
KNOW, THE PURSUIT OF SCIENCE AND

7886
04:35:49,160 --> 04:35:51,720
RIGOR OF SCIENCE AND EXCELLING

7887
04:35:51,720 --> 04:35:53,160
AND HAVING THE DEPARTMENT EXCEL

7888
04:35:53,160 --> 04:35:54,960
IN WHATEVER FIELD IS SOMETHING

7889
04:35:54,960 --> 04:35:56,240
THAT IS INNATE TO THEM.

7890
04:35:56,240 --> 04:35:57,720
AND IF THEY DIDN'T CARE ABOUT

7891
04:35:57,720 --> 04:35:59,240
THAT, THEY'D BE IN A PRIVATE

7892
04:35:59,240 --> 04:36:00,480
PRACTICE OR DOING SOMETHING

7893
04:36:00,480 --> 04:36:00,800
DIFFERENTLY.

7894
04:36:00,800 --> 04:36:02,920
I MEAN, I'VE BEEN LUCKY ENOUGH

7895
04:36:02,920 --> 04:36:04,320
TO BE HIRED BY CHAIRS WHO WANT

7896
04:36:04,320 --> 04:36:05,800
ME TO DO SCIENCE AND SPEND HALF

7897
04:36:05,800 --> 04:36:07,440
MY TIME NOT MAKING MONEY FOR THE

7898
04:36:07,440 --> 04:36:09,240
HOSPITAL BUT DOING, YOU KNOW,

7899
04:36:09,240 --> 04:36:10,240
DOING SCIENCE.

7900
04:36:10,240 --> 04:36:11,920
ANYWAY, BUT THE POINT I WAS

7901
04:36:11,920 --> 04:36:13,000
GOING TO MAKE IS A QUICK ONE TO

7902
04:36:13,000 --> 04:36:14,640
STEVE JUST THAT AS A PRODUCT OF

7903
04:36:14,640 --> 04:36:17,720
A K12 PROGRAM THAT STEVE STARTED

7904
04:36:17,720 --> 04:36:18,920
MANY YEARS AGO, I DON'T KNOW,

7905
04:36:18,920 --> 04:36:20,560
MORE THAN A -- I DON'T KNOW,

7906
04:36:20,560 --> 04:36:23,240
MORE THAN 15, 17, 18 YEARS AGO

7907
04:36:23,240 --> 04:36:24,120
FOR NEUROSURGERY, I'LL JUST SAY

7908
04:36:24,120 --> 04:36:25,720
THAT, YOU KNOW, IT WAS A

7909
04:36:25,720 --> 04:36:27,400
FANTASTIC EXPERIENCE FOR ME BACK

7910
04:36:27,400 --> 04:36:29,160
THEN, AND I THINK IT REALLY DOES

7911
04:36:29,160 --> 04:36:31,160
INTRODUCE THESE YOUNG PEOPLE TO

7912
04:36:31,160 --> 04:36:34,440
WHAT THE NIH MACHINE IS LIKE,

7913
04:36:34,440 --> 04:36:37,840
WHAT THE PROCESS IS LIKE, AND

7914
04:36:37,840 --> 04:36:39,200
HAVING -- I TALK AT THESE

7915
04:36:39,200 --> 04:36:39,920
CONFERENCES EVERY YEAR AND I

7916
04:36:39,920 --> 04:36:44,200
JUST SAY, HAVING DR. KORN IN

7917
04:36:44,200 --> 04:36:45,760
YOUR CORNER REALLY MAKES A

7918
04:36:45,760 --> 04:36:47,080
DIFFERENCE AT THAT YOUNG STAGE

7919
04:36:47,080 --> 04:36:47,640
IN ONE'S CAREER.

7920
04:36:47,640 --> 04:36:50,880
SO I THINK THESE PROGRAMS, FOR

7921
04:36:50,880 --> 04:36:52,600
ME ANYWAY AND A LOT OF PEOPLE

7922
04:36:52,600 --> 04:36:54,320
THAT I KNOW AS YOUNG

7923
04:36:54,320 --> 04:36:55,520
NEUROSURGEONS BACK THEN WAS

7924
04:36:55,520 --> 04:36:56,960
EXTREMELY EFFECTIVE, AND I CAN

7925
04:36:56,960 --> 04:36:57,680
ONLY ASSUME THE SAME WOULD BE

7926
04:36:57,680 --> 04:36:58,640
TRUE FOR SOMETHING LIKE THIS.

7927
04:36:58,640 --> 04:37:00,560
>>THANKS, SAMEER.

7928
04:37:00,560 --> 04:37:01,120
MAYBE TWO MORE QUESTIONS.

7929
04:37:01,120 --> 04:37:10,720
WE HAVE ED AND THEN --

7930
04:37:10,720 --> 04:37:14,320
>>JUST TO ADDRESS QUICKLY
THE

7931
04:37:14,320 --> 04:37:16,040
COMMENT ABOUT WHY WOULD

7932
04:37:16,040 --> 04:37:17,880
DEPARTMENTS WANT TO DO THIS,

7933
04:37:17,880 --> 04:37:19,880
GIVEN THE DEMAND WE ALL HAVE TO

7934
04:37:19,880 --> 04:37:24,120
MAKE MONEY, I THINK ONE OF THE

7935
04:37:24,120 --> 04:37:26,280
ISSUES THAT IS COMING UP AT

7936
04:37:26,280 --> 04:37:27,280
LEAST AT VANDERBILT WHERE OUR

7937
04:37:27,280 --> 04:37:32,200
NEW INTERIM CHAIR IS PRIMARILY A

7938
04:37:32,200 --> 04:37:33,880
RESEARCHER IS THAT THE WHOLE

7939
04:37:33,880 --> 04:37:36,280
ENTERPRISE, THE WHOLE MEDICAL

7940
04:37:36,280 --> 04:37:39,120
SCHOOL SEES THE EMERGENCY ROOM

7941
04:37:39,120 --> 04:37:45,800
AS A CONDUIT TO CLINICAL

7942
04:37:45,800 --> 04:37:47,040
RESEARCH, AND SO EMERGENCY

7943
04:37:47,040 --> 04:37:48,440
MEDICINE IS OFTEN AN ENTRY POINT

7944
04:37:48,440 --> 04:37:49,880
FOR DOING ALL SORTS OF DIFFERENT

7945
04:37:49,880 --> 04:37:52,440
RESEARCH PROJECTS, AND SO

7946
04:37:52,440 --> 04:37:53,760
INCLUDING IN NEUROLOGY.

7947
04:37:53,760 --> 04:37:56,640
SO HAVING A REALLY STRONG

7948
04:37:56,640 --> 04:37:58,480
RESEARCH GROUNDING IN THE

7949
04:37:58,480 --> 04:38:00,360
EMERGENCY MEDICINE DEPARTMENT

7950
04:38:00,360 --> 04:38:03,160
HELPS THE WHOLE INSTITUTION WITH

7951
04:38:03,160 --> 04:38:06,840
ITS RESEARCH MISSION.

7952
04:38:06,840 --> 04:38:08,720
SO I THINK THAT PERHAPS SUPPORT

7953
04:38:08,720 --> 04:38:13,720
FROM THE DEANS FOR THE CHAIRS IN

7954
04:38:13,720 --> 04:38:14,840
EMERGENCY MEDICINE TO SUPPORT

7955
04:38:14,840 --> 04:38:16,400
OUR RESEARCH CAN BE REALLY

7956
04:38:16,400 --> 04:38:17,480
HELPFUL IN THIS SITUATION.

7957
04:38:17,480 --> 04:38:19,360
BUT I'M VERY EXCITED ABOUT THIS

7958
04:38:19,360 --> 04:38:19,600
PROPOSAL.

7959
04:38:19,600 --> 04:38:21,240
IT SEEMS LIKE IT'S NEEDED AND I

7960
04:38:21,240 --> 04:38:23,000
THINK IT WILL BE REALLY WELCOMED

7961
04:38:23,000 --> 04:38:24,480
ACROSS THE COUNTRY.

7962
04:38:24,480 --> 04:38:28,640
>>THANKS A LOT, ED.

7963
04:38:28,640 --> 04:38:30,080
LAST, JIN-MOO.

7964
04:38:30,080 --> 04:38:32,280
>>I'M JUST JUMPING IN TO
ADD TO

7965
04:38:32,280 --> 04:38:33,280
WHAT EVERYONE ELSE HAS BEEN

7966
04:38:33,280 --> 04:38:35,800
SAYING IN RESPONSE TO TIM'S

7967
04:38:35,800 --> 04:38:38,960
QUESTION ABOUT WHY WE IN

7968
04:38:38,960 --> 04:38:41,320
ACADEMIC MEDICINE SUPPORT

7969
04:38:41,320 --> 04:38:41,920
RESEARCH.

7970
04:38:41,920 --> 04:38:43,800
ONE THING I'D SAY IS THAT PART

7971
04:38:43,800 --> 04:38:48,240
OF THE ACADEMIC MISSION IS TO DO

7972
04:38:48,240 --> 04:38:48,520
RESEARCH.

7973
04:38:48,520 --> 04:38:49,880
THE RESEARCH BRINGS PRESTIGE TO

7974
04:38:49,880 --> 04:38:51,520
THE DEPARTMENT, WHICH ATTRACTS

7975
04:38:51,520 --> 04:38:52,600
CLINICIANS HERE.

7976
04:38:52,600 --> 04:38:56,440
SO THERE'S A VIRTUOUS CYCLE OF

7977
04:38:56,440 --> 04:38:58,040
THE RESEARCH BRINGING THE

7978
04:38:58,040 --> 04:38:58,440
CLINICIANS.

7979
04:38:58,440 --> 04:38:59,760
THE CLINICIANS BRING IN THE

7980
04:38:59,760 --> 04:39:00,880
REVENUE THAT SUPPORTS THE

7981
04:39:00,880 --> 04:39:01,120
RESEARCH.

7982
04:39:01,120 --> 04:39:03,760
SO IT'S THIS VIRTUAL CYCLE THAT

7983
04:39:03,760 --> 04:39:06,280
SUPPORTS ONE ANOTHER.

7984
04:39:06,280 --> 04:39:08,720
AND YOU'LL PROBABLY NOTICE THAT

7985
04:39:08,720 --> 04:39:10,680
EVERY FEBRUARY, THE CHAIRS RUN

7986
04:39:10,680 --> 04:39:15,480
TO THE BLUE RIDGE NIH RANKING,

7987
04:39:15,480 --> 04:39:16,560
BECAUSE THAT'S A REALLY

7988
04:39:16,560 --> 04:39:18,040
IMPORTANT PART OF HOW A

7989
04:39:18,040 --> 04:39:19,560
DEPARTMENT PERFORMS, HOW GOOD IS

7990
04:39:19,560 --> 04:39:20,680
THE RESEARCH.

7991
04:39:20,680 --> 04:39:24,120
IS IT SUPPORTED BY NIH.

7992
04:39:24,120 --> 04:39:25,320
SO I THINK IT'S THE PACKAGE DEAL

7993
04:39:25,320 --> 04:39:27,400
THAT SEPARATES ACADEMIC MEDICINE

7994
04:39:27,400 --> 04:39:28,680
FROM PRIVATE PRACTICE.

7995
04:39:28,680 --> 04:39:30,280
IT'S REALLY THAT RESEARCH.

7996
04:39:30,280 --> 04:39:33,680
AND SO I ABSOLUTELY SUPPORT THE

7997
04:39:33,680 --> 04:39:34,040
K12.

7998
04:39:34,040 --> 04:39:38,120
THIS HAS BEEN A FANTASTIC

7999
04:39:38,120 --> 04:39:39,480
PROGRAM, AND THE E.D., I THINK

8000
04:39:39,480 --> 04:39:43,320
AS A NEW SPECIALTY, REALLY NEEDS

8001
04:39:43,320 --> 04:39:46,800
THAT BOOST TOWARDS ITS RESEARCH

8002
04:39:46,800 --> 04:39:47,440
YOUNG FACULTY.

8003
04:39:47,440 --> 04:39:50,960
>>THANKS A LOT, JIN-MOO.

8004
04:39:50,960 --> 04:39:52,320
THAT'S VERY HELPFUL.

8005
04:39:52,320 --> 04:39:52,840
OKAY, I HAVEN'T HEARD ANY

8006
04:39:52,840 --> 04:39:53,920
COMMENTS ABOUT ANY OF THESE

8007
04:39:53,920 --> 04:39:54,680
THREE INITIATIVES.

8008
04:39:54,680 --> 04:39:55,680
REMEMBER, WE'RE TALKING ABOUT

8009
04:39:55,680 --> 04:39:57,800
THE CHRONIC FATIGUE SYNDROME

8010
04:39:57,800 --> 04:40:00,760
CENTER RENEWAL, THE COVID

8011
04:40:00,760 --> 04:40:02,720
SEQUELAE, THE NEUROLOGICAL

8012
04:40:02,720 --> 04:40:05,240
PHENOTYPES INITIATIVE, AND THEN

8013
04:40:05,240 --> 04:40:05,800
LAST ONE.

8014
04:40:05,800 --> 04:40:07,680
SO I'M ASSUMING THERE WILL BE A

8015
04:40:07,680 --> 04:40:09,760
MOTION TO APPROVE THE THREE OF

8016
04:40:09,760 --> 04:40:10,800
THOSE.

8017
04:40:10,800 --> 04:40:13,280
THERE'S GINA.

8018
04:40:13,280 --> 04:40:13,640
A SECOND?

8019
04:40:13,640 --> 04:40:15,120
YOU CAN VOTE ON ALL THREE OF

8020
04:40:15,120 --> 04:40:16,480
THESE CONCEPTS IN THE CHAT.

8021
04:40:16,480 --> 04:40:18,120
AGAIN, THESE ARE STILL IN THE

8022
04:40:18,120 --> 04:40:20,120
CONCEPT STAGE, SO THEY'LL

8023
04:40:20,120 --> 04:40:21,760
CONTINUE TO BE DEVELOPED.

8024
04:40:21,760 --> 04:40:23,720
IF WE COULD PUT UP THE LAST

8025
04:40:23,720 --> 04:40:25,520
SLIDE, THE LAST THING ON THE

8026
04:40:25,520 --> 04:40:26,720
AGENDA, WHICH I'M GOING TO GO

8027
04:40:26,720 --> 04:40:31,200
THROUGH VERY QUICKLY.

8028
04:40:31,200 --> 04:40:33,160
SO THIS IS THE LIST OF THE

8029
04:40:33,160 --> 04:40:34,880
CONCEPTS WE'RE NOT PROPOSING TO

8030
04:40:34,880 --> 04:40:35,200
DISCUSS.

8031
04:40:35,200 --> 04:40:36,520
IF YOU HAVE QUESTIONS, YOU CAN

8032
04:40:36,520 --> 04:40:37,400
ASK THEM.

8033
04:40:37,400 --> 04:40:39,040
I'LL JUST VERY QUICKLY GO

8034
04:40:39,040 --> 04:40:39,640
THROUGH THEM.

8035
04:40:39,640 --> 04:40:41,040
IT'S MOSTLY A LIST OF RENEWALS.

8036
04:40:41,040 --> 04:40:44,560
IF YOU LOOK AT THE LEFT-HAND

8037
04:40:44,560 --> 04:40:45,440
COLUMN HERE.

8038
04:40:45,440 --> 04:40:46,520
THERE'S A SECOND SLIDE YOU'LL

8039
04:40:46,520 --> 04:40:47,400
SEE IN A MINUTE.

8040
04:40:47,400 --> 04:40:50,520
SO THE FIRST FIVE, LET'S SEE,

8041
04:40:50,520 --> 04:40:51,800
ONE, TWO, THREE, FOUR, FIVE, OH,

8042
04:40:51,800 --> 04:40:53,640
ACTUALLY THE ORDER IS A LITTLE

8043
04:40:53,640 --> 04:40:56,520
BIT DIFFERENT.

8044
04:40:56,520 --> 04:40:58,160
OH, NO, THE FIRST FIVE ARE ALL

8045
04:40:58,160 --> 04:41:00,800
NICINITIATIVES THAT ARE GOING TE

8046
04:41:00,800 --> 04:41:02,600
FUNDED IF WE MOVE FORWARD ON

8047
04:41:02,600 --> 04:41:04,440
THEM ESSENTIALLY FROM OUR UR

8048
04:41:04,440 --> 04:41:05,000
NINDS BASE BUDGET.

8049
04:41:05,000 --> 04:41:07,760
AFTER THAT IT'S MOSTLY

8050
04:41:07,760 --> 04:41:10,840
INITIATIVES COMING FROM

8051
04:41:10,840 --> 04:41:13,360
DIFFERENT FUNDING STREAMS LIKE

8052
04:41:13,360 --> 04:41:14,680
BRAIN, ET CETERA.

8053
04:41:14,680 --> 04:41:16,880
I DON'T HAVE A POINTER HERE BUT

8054
04:41:16,880 --> 04:41:19,520
IF YOU GO THROUGH THEM QUICKLY,

8055
04:41:19,520 --> 04:41:21,920
NUMBER ONE IS A PROGRAM THAT

8056
04:41:21,920 --> 04:41:23,600
PROVIDES SEED MONEY FOR GROUPS

8057
04:41:23,600 --> 04:41:26,480
OF PIs WHO WANT TO APPLY TO

8058
04:41:26,480 --> 04:41:30,880
OUR PARKINSON'S UDAL CENTER

8059
04:41:30,880 --> 04:41:31,360
PROGRAM.

8060
04:41:31,360 --> 04:41:32,560
WE'VE DONE THIS BEFORE, IT SEEMS

8061
04:41:32,560 --> 04:41:33,760
TO HAVE BEEN VERY EFFECTIVE.

8062
04:41:33,760 --> 04:41:36,160
NEXT IS A RENEWAL OF THE ACTUAL

8063
04:41:36,160 --> 04:41:38,080
UDALL CENTER'S PROGRAM, WHICH IS

8064
04:41:38,080 --> 04:41:38,600
CONGRESSIONALLY MANDATED.

8065
04:41:38,600 --> 04:41:39,720
THIS IS SOMETHING THAT WE WERE

8066
04:41:39,720 --> 04:41:41,440
TOLD THAT WE WILL TO HAVE, AND

8067
04:41:41,440 --> 04:41:44,880
THEY'VE GONE ON TO BEING

8068
04:41:44,880 --> 04:41:47,240
EXTREMELY SUCCESSFUL.

8069
04:41:47,240 --> 04:41:50,080
THIRD IS THE BLUEPRINT ENDURE

8070
04:41:50,080 --> 04:41:50,760
PROGRAM, WHICH ESSENTIALLY HOW

8071
04:41:50,760 --> 04:41:52,200
TO SUMMARIZE IT IN A SENTENCE,

8072
04:41:52,200 --> 04:41:55,720
IT HELPS UNDERGRADUATE STUDENTS

8073
04:41:55,720 --> 04:41:57,360
FROM DIVERSE BACKGROUNDS TO --

8074
04:41:57,360 --> 04:41:59,000
IT ENCOURAGES THEM AND HELPS

8075
04:41:59,000 --> 04:42:02,880
THEM GET INVOLVED IN PH.D.

8076
04:42:02,880 --> 04:42:03,880
PROGRAMS IN NEUROSCIENCE.

8077
04:42:03,880 --> 04:42:04,760
THAT'S BLUEPRINT ENDURE.

8078
04:42:04,760 --> 04:42:06,960
THIS IS ALSO A REISSUE.

8079
04:42:06,960 --> 04:42:09,760
THE NEXT TWO, NUMBERS 4 AND 5,

8080
04:42:09,760 --> 04:42:12,600
ARE ESSENTIALLY REISSUES OF OUR

8081
04:42:12,600 --> 04:42:14,920
STANDARD TRAINING GRANT AND

8082
04:42:14,920 --> 04:42:15,840
K01 PROGRAMS.

8083
04:42:15,840 --> 04:42:19,520
AND THEN LET'S SEE, WHAT'S NEXT

8084
04:42:19,520 --> 04:42:20,400
HERE.

8085
04:42:20,400 --> 04:42:22,480
NEXT IS -- OKAY, THE ORDER HAS

8086
04:42:22,480 --> 04:42:23,080
CHANGED A LITTLE BIT.

8087
04:42:23,080 --> 04:42:23,640
OKAY.

8088
04:42:23,640 --> 04:42:26,680
NEXT IS THE COUNTER -- IS A

8089
04:42:26,680 --> 04:42:27,840
COUNTERACT INITIATIVE.

8090
04:42:27,840 --> 04:42:28,960
THIS IS OUR COUNTERTERRORISM

8091
04:42:28,960 --> 04:42:31,960
PROGRAM WHICH IS PAID THROUGH A

8092
04:42:31,960 --> 04:42:33,160
SEPARATE FUNDING STREAM.

8093
04:42:33,160 --> 04:42:35,320
THE ALS -- THIS IS A RENEWAL OF

8094
04:42:35,320 --> 04:42:37,960
THE ALS EXPANDED ACCESS

8095
04:42:37,960 --> 04:42:40,120
INITIATIVE THAT WE'VE SEEN

8096
04:42:40,120 --> 04:42:42,560
BEFORE IN ITS PREVIOUS

8097
04:42:42,560 --> 04:42:43,240
ITERATION.

8098
04:42:43,240 --> 04:42:47,200
NEXT IS A BLUEPRINT PROGRAM, AND

8099
04:42:47,200 --> 04:42:49,440
BLUEPRINT CONSISTS OF ALL THE

8100
04:42:49,440 --> 04:42:51,160
NIH INSTITUTES THAT FUND

8101
04:42:51,160 --> 04:42:51,640
NEUROSCIENCE.

8102
04:42:51,640 --> 04:42:53,680
WE ARE ONE OF THE MAJOR PLAYERS

8103
04:42:53,680 --> 04:42:54,440
IN THIS PROGRAM.

8104
04:42:54,440 --> 04:42:57,680
IT'S A LONG-STANDING AND VERY

8105
04:42:57,680 --> 04:42:58,760
SUCCESSFUL PROGRAM AND NINDS

8106
04:42:58,760 --> 04:43:00,880
CONTRIBUTES PARTLY THE BLUEPRINT

8107
04:43:00,880 --> 04:43:01,840
BUDGET.

8108
04:43:01,840 --> 04:43:05,280
AND ALL OF THE REMAINING

8109
04:43:05,280 --> 04:43:06,240
INITIATIVES INVOLVE EITHER

8110
04:43:06,240 --> 04:43:09,640
BRAIN, HEAL, OR ADADRD.

8111
04:43:09,640 --> 04:43:13,720
AND EACH OF THEM HAS A DEDICATED

8112
04:43:13,720 --> 04:43:14,920
FEDERAL SETASIDE.

8113
04:43:14,920 --> 04:43:16,640
SO FOR EXAMPLE, YOU CAN SEE THAT

8114
04:43:16,640 --> 04:43:19,160
THERE'S THE BRAIN INITIATIVE

8115
04:43:19,160 --> 04:43:21,760
LISTED UNDER NUMBER 9, THERE'S

8116
04:43:21,760 --> 04:43:24,240
THREE INITIATIVES AFTER THAT,

8117
04:43:24,240 --> 04:43:30,480
THE EXPOSOME ALL FOR HEAL, ACUTE

8118
04:43:30,480 --> 04:43:32,280
AND CHRONIC PAIN, AND ONE ON

8119
04:43:32,280 --> 04:43:33,080
WEARABLE DEVICES.

8120
04:43:33,080 --> 04:43:34,360
IF WE COULD GO TO THE NEXT

8121
04:43:34,360 --> 04:43:38,960
SLIDE.

8122
04:43:38,960 --> 04:43:40,600
I'M NOT GOING TO READ ALL OF

8123
04:43:40,600 --> 04:43:41,880
THESE BUT YOU'VE GOT WRITE-UPS

8124
04:43:41,880 --> 04:43:43,360
FOR ALL OF THEM IN THE ECB, AND

8125
04:43:43,360 --> 04:43:45,320
YOU CAN SEE THAT THE FIRST TWO

8126
04:43:45,320 --> 04:43:46,480
ARE HEAL, AND ALL THE REST OF

8127
04:43:46,480 --> 04:43:51,360
THEM ARE ESSENTIALLY AD/ADRD

8128
04:43:51,360 --> 04:43:51,640
INITIATIVES.

8129
04:43:51,640 --> 04:43:52,560
NOW THE THING THAT I'LL SAY IS

8130
04:43:52,560 --> 04:43:54,520
THAT ALL OF THESE INITIATIVES

8131
04:43:54,520 --> 04:43:57,400
FOR BRAIN, HEAL AND ADRD ARE

8132
04:43:57,400 --> 04:44:00,800
VERY EXTENSIVELY VETTED BEFORE

8133
04:44:00,800 --> 04:44:02,200
YOU SEE THEM HERE.

8134
04:44:02,200 --> 04:44:03,280
THEY'RE VETTED BY GROUPS OF

8135
04:44:03,280 --> 04:44:04,520
STAFF, THEY'RE VETTED IN TWO OF

8136
04:44:04,520 --> 04:44:05,960
THESE CASES, IN THE CASE OF HEAL

8137
04:44:05,960 --> 04:44:09,920
AND BRAIN, BY MULTI-COUNCIL

8138
04:44:09,920 --> 04:44:11,280
WORKING GROUPS WHICH HAVE

8139
04:44:11,280 --> 04:44:11,880
DISCUSSED THEM IN DETAIL, AND

8140
04:44:11,880 --> 04:44:13,560
MOST IMPORTANTLY, THEY'RE VETTED

8141
04:44:13,560 --> 04:44:15,120
BY THE INSTITUTE DIRECTORS OVER

8142
04:44:15,120 --> 04:44:18,360
THE INITIATIVES -- OF THE

8143
04:44:18,360 --> 04:44:20,040
INSTITUTES THAT PARTICIPATED

8144
04:44:20,040 --> 04:44:21,480
BRING HEAL, ADRD.

8145
04:44:21,480 --> 04:44:24,000
SO WE WEREN'T PLANNING TO DELVE

8146
04:44:24,000 --> 04:44:24,720
INTO ANY OF THESE.

8147
04:44:24,720 --> 04:44:26,000
WHY DON'T YOU GO BACK TO THE

8148
04:44:26,000 --> 04:44:29,440
FIRST SLIDE AGAIN.

8149
04:44:29,440 --> 04:44:30,080
BULL -- BECAUSE THE FIRST FIVE

8150
04:44:30,080 --> 04:44:31,280
ARE THE ONES THAT REALLY COME

8151
04:44:31,280 --> 04:44:32,440
DIRECTLY OUT OF OUR BUDGET.

8152
04:44:32,440 --> 04:44:35,200
BUT IF THERE'S ANY QUICK

8153
04:44:35,200 --> 04:44:36,000
QUESTIONS, WE CAN HAVE THE

8154
04:44:36,000 --> 04:44:37,520
PROGRAM DIRECTORS WHO ARE LISTED

8155
04:44:37,520 --> 04:44:44,760
ON THE LAST COLUMN ANSWER THEM.

8156
04:44:44,760 --> 04:44:47,360
ANYTHING PEOPLE WANT TO KNOW?

8157
04:44:47,360 --> 04:44:49,160
OKAY.

8158
04:44:49,160 --> 04:44:50,240
IN THAT CASE, IF THERE ARE

8159
04:44:50,240 --> 04:44:53,520
QUESTIONS LATER ON, EMAIL ME AND

8160
04:44:53,520 --> 04:44:54,240
I CAN ANSWER THEM.

8161
04:44:54,240 --> 04:44:57,600
IN THAT CASE, I NEED AN EN BLOC

8162
04:44:57,600 --> 04:44:59,440
MOTION TO APPROVE ALL THE

8163
04:44:59,440 --> 04:45:01,160
INITIATIVES ON THESE TWO SLIDES

8164
04:45:01,160 --> 04:45:01,760
TO GO FORWARD.

8165
04:45:01,760 --> 04:45:03,080
>>MOTION TO APPROVE EN
BLOC.

8166
04:45:03,080 --> 04:45:04,960
>>NICE JOB, TIM.

8167
04:45:04,960 --> 04:45:06,400
I SEE A SECOND, I THINK FROM

8168
04:45:06,400 --> 04:45:06,840
GINA.

8169
04:45:06,840 --> 04:45:08,040
THINK SHE HAD HER HAND UP.

8170
04:45:08,040 --> 04:45:09,800
YOU CAN TAKE THAT SLIDE DOWN,

8171
04:45:09,800 --> 04:45:11,880
AND THEN YOU CAN VOTE IN THE

8172
04:45:11,880 --> 04:45:15,960
CHAT.

8173
04:45:15,960 --> 04:45:17,120
DID YOU JUST SAY SOMETHING,

8174
04:45:17,120 --> 04:45:17,600
WALTER?

8175
04:45:17,600 --> 04:45:25,840
THERE'S AN ECHO COMING FROM YOU.

8176
04:45:25,840 --> 04:45:31,920
I CAN'T HEAR YOU, WALTER.

8177
04:45:31,920 --> 04:45:34,880
>>HE GOT RID OF THE ECHO.

8178
04:45:34,880 --> 04:45:35,440
>>CAN YOU HEAR ME?

8179
04:45:35,440 --> 04:45:36,840
>>NOW WE CAN HEAR YOU.

8180
04:45:36,840 --> 04:45:38,040
>>OH, OKAY.

8181
04:45:38,040 --> 04:45:41,840
I WAS GOING TO SAY, THAT

8182
04:45:41,840 --> 04:45:43,200
IMPRESSIVE LIST IS A TESTIMONY

8183
04:45:43,200 --> 04:45:44,880
TO THE AMOUNT OF WORK THE

8184
04:45:44,880 --> 04:45:46,280
PROGRAM DIRECTORS ARE DOING.

8185
04:45:46,280 --> 04:45:48,440
YOU KNOW, IT'S ONE THING TO BE

8186
04:45:48,440 --> 04:45:52,200
ABLE TO, YOU KNOW, GET YOUR

8187
04:45:52,200 --> 04:45:54,280
R01 GRANTEE AND TALK TO THEM,

8188
04:45:54,280 --> 04:45:55,720
BUT IT'S LIKE COMPLETELY

8189
04:45:55,720 --> 04:45:57,440
DIFFERENT TRYING TO PUT THESE

8190
04:45:57,440 --> 04:46:00,480
PROGRAMS TOGETHER, AND AS YOU

8191
04:46:00,480 --> 04:46:01,240
SAW, MOST OF THOSE PROGRAMS ARE

8192
04:46:01,240 --> 04:46:04,320
BEING FUNDED BY THESE SPECIAL

8193
04:46:04,320 --> 04:46:10,320
TARGETED FUNDS.

8194
04:46:10,320 --> 04:46:11,760
BUT THAT'S REALLY WHERE NINDS

8195
04:46:11,760 --> 04:46:12,960
STAFF CAME TO THE FOREFRONT.

8196
04:46:12,960 --> 04:46:17,480
THEY ARE BLAZING NEW RESEARCH

8197
04:46:17,480 --> 04:46:17,680
AREAS.

8198
04:46:17,680 --> 04:46:20,920
>>THERE'S BEEN A HUGE
CHANGE

8199
04:46:20,920 --> 04:46:23,680
SINCE I GOT HERE, WHICH IS

8200
04:46:23,680 --> 04:46:24,880
ESSENTIALLY THESE THREE HUGE

8201
04:46:24,880 --> 04:46:26,520
FEDERAL INITIATIVES.

8202
04:46:26,520 --> 04:46:28,680
THERE'S ALSO COUNTERACT AS WELL.

8203
04:46:28,680 --> 04:46:30,280
WHICH NOW COMPRISE, YOU KNOW,

8204
04:46:30,280 --> 04:46:32,000
CLOSE TO HALF OUR BUDGET.

8205
04:46:32,000 --> 04:46:34,280
SO THERE'S BEEN AN INCREDIBLE

8206
04:46:34,280 --> 04:46:39,520
RAMP UP-UP BY UP BY OUR STAFF TE

8207
04:46:39,520 --> 04:46:41,680
THESE WORK AND THAT'S WHAT GINA

8208
04:46:41,680 --> 04:46:43,440
WAS APPLAUDING AND WONDERING

8209
04:46:43,440 --> 04:46:44,400
ABOUT AND WORRYING ABOUT.

8210
04:46:44,400 --> 04:46:46,120
SO YES, PEOPLE ARE STRESSED TO

8211
04:46:46,120 --> 04:46:47,000
THE LIMIT AT THE MOMENT AND

8212
04:46:47,000 --> 04:46:47,960
WE'RE TRYING TO DO SOMETHING

8213
04:46:47,960 --> 04:46:48,840
ABOUT THAT.

8214
04:46:48,840 --> 04:46:52,360
OKAY, LOOK, I THINK --

8215
04:46:52,360 --> 04:46:53,400
>> -- WORK HERE.

8216
04:46:53,400 --> 04:46:54,480
IT'S A GREAT PLACE.

8217
04:46:54,480 --> 04:46:56,880
>>YEAH, THAT'S RIGHT.

8218
04:46:56,880 --> 04:46:57,200
OKAY.

8219
04:46:57,200 --> 04:47:01,960
THANKS TO EVERYBODY.

8220
04:47:01,960 --> 04:47:04,160
GOING ONCE FOR LAST COMMENTS?

8221
04:47:04,160 --> 04:47:04,480
TWICE.

8222
04:47:04,480 --> 04:47:06,240
WE ARE ADJOURNED, AND I'LL SEE

8223
04:47:06,240 --> 04:47:07,120
YOU ALL TOMORROW.

8224
04:47:07,120 --> 04:47:09,040
>>THANK YOU.

8225
04:47:09,040 --> 00:00:00,000
BYE-BYE.