I'D LIKE TO CALL TO ORDER MY
FIRST MEETING AS THE CHAIR.
THIS IS ANOTHER TRANSITION
MEETING FOR THE BOARD MEMBERS
BUT I'D LIKE TO WELCOME OUR
BOARD MEMBERS INCLUDING THOSE AT
STAGES OF THE MOMINNATION
PROCESS FORAY POINTMENT FOR THE
CLINICAL CENTRE RESEARCH
HOSPITAL BOARD AS WELL AS
MEMBERS OF THE NIH LEADERSHIP,
THE NCCIH COMMUNITY AND MEMBERS
OF THE PUBLIC WHO MAY ALSO BE
JOINING US.
WE HAVE MEETING PARTICIPANTS ON
ZOOM AND MANY OTHER INDIVIDUALS
WHO ARE PARTICIPATING VIA THE
LIVE VIDEO CAST.
SO, ALL OF OUR BOARD MEMBERS ARE
JOINING US TODAY EXCEPT Dr.
REGINA CUNNINGHAM WHO IS
PARTICIPATING IN HER
INSTITUTION, WHICH IS UPENN
PRESIDENTIAL INAUGURATION TODAY.
I'D LIKE TO ALSO GIVE A SPECIAL
THANKS TO Dr. SHARON DEVASKA
FROM UCLA WHO IS STARTING HER
DAY AT 6:00 A.M. TO BE WITH US
TODAY.
GOOD MORNING AND WELCOME.
TODAY WE HAVE A REALLY GREAT
MEETING.
WE'VE GOT SOME HISTORY, WE'VE
GOT HOSPITAL OPERATIONS AND
CLINICAL RESEARCH UPDATES TOO.
FIRST, I'D LIKE TO TURN IT OVER
TO DR. TABAK, WE LOOK FORWARD TO
HEARING ABOUT CHANGES IN BOARD
MEMBERSHIP AND ANY NIH UPDATES.
>>THANK YOU, VERY MUCH, I
APPRECIATE THE OPPORTUNITY TO BE
HERE THIS MORNING.
IF THE SLIDES CAN BE CALLED UP.
THANK YOU.
WE ARE GO TO THE FIRST SLIDE,
PLEASE.
>>THIS MORNING I'D LIKE TO TALK
TO YOU ABOUT NIH LEADERSHIP
CHANGES.
BRAG A LITTLE BIT ABOUT SOME
AWARDS THAT NIH STAFF HAVE BEEN
ACCORDED, UPDATE YOU ON SOME OF
OUR DIVERSITY, EQUITY, I AM
CONCLUSION AND ACCESSIBILITY
ACTIVITIES AND THEN JUST AGAIN
UNDERSCORE OUR CONTINUED
COMMITMENT TO EARLY STAGE
INVESTIGATORS WITH SOME DATA
FROM OUR EXTRAMURAL EFFORTS.
SO IF I COULD HAVE THE NEXT
SLIDE, PLEASE.
AS YOU KNOW, Dr. VAN COOTS IS
THE NEW CCHRB CHAIR.
WE'RE DELIGHTED HE HAS AGREED TO
DO THIS.
AND AS HE MENTIONED, THIS IS A
TRANSITIONAL MEETING, WE HAVE
PEOPLE COMING AND GOING AND
WE'LL POINT FOLKS OUT THROUGHOUT
THE PROCEEDINGS.
PROCEEDING.WE HAVE OUR FINAL FOG
MEMBERS ABOUT TO DEPART.
Dr. RICK SHANNON, WHO WAS WITH
US FROM THE BEGINNING.
WE PROMISED RICK THIS WOULD NOT
BE A LIFE SENTENCE AND SO RICK,
WE CAN'T THANK YOU ENOUGH FOR
ALL THAT YOU'VE DONE FOR THE
BOARD AND NIH IN GENERAL AND BE
WEARY WHEN YOU GET A PHONE CALL
FROM OUR AREA CODE.
NEXT, PLEASE -- NEW BOARD
MEMBERS, AGAIN, AS THROUGHOUT
THE DAY AS THEY SPEAK, THEY'LL
INTRODUCE THEMSELVES TO YOU BUT
AS YOU CAN SEE, Dr. DAVID
BAUM, Dr. CHIN, Dr.
CUNNINGHAM WILL NOT BE WITH US
THIS MORNING AND Dr. ROYSTER
AND Dr. CRAIG SAMITT.
THANK YOU AND WE'RE GRATEFUL FOR
YOUR SERVICE.
AS YOU CAN TELL, WE ONLY ASK
VERY, VERY BUSY PEOPLE TO DO
THIS.
THIS NEW GROUP OF BOARD MEMBERS
IS NO EXCEPTION SO WE APPRECIATE
YOU TAKING TIME FROM WHAT OUR
ARE COMPLEX SCHEDULES AND WE DO
THANK YOU.
ANNOUNCE A NEW COMINGS AND
GOINGS AMONG THE LEADERSHIP AT
NIH.
Dr. JIM ANDERSON WHO HAD BEEN
THE DIRECTOR OF THE DIVISION OF
PROGRAMME COR DONATION PLANNING
AND STRATEGIC INITIATIVES
REFERRED TO US DEEP KIPSY HAS
RETIRED.
THIS IS THE DIVISION OF THE
DIRECTOR AT NIH THAT IS HOME TO
MANY OF THE OFFICES THAT
COORDINATION ACROSS THE AGENCY
SO THE OFFICE OF RESEARCH ON
WOMEN'S HEALTH, THE OFFICE OF
AIDS RESEARCH AND SO FOR SO
THERE ARE MANY OF THE GROUPS
THAT WORK ACROSS THE AGENCY AND
THIS IS THEIR HOME DIVISION AND
JIM RAN THIS FOR OFFER A DECADE.
WE HAVE THE NEXT SLIDE, PLEASE.
I THINK MANY OF YOU KNOW THAT
Dr. NED SHARPLESS STEPPED DOWN
AND RETIRED FROM GOVERNMENT
SERVICE.
AND OF COURSE, NED WAS AN ACTIVE
PARTICIPANT AND ALL CLINICAL
CENTRE BOARD ACTIVITIES AND HE
WILL BE MISSED AND YOU HEARD
ANTHONY FAUCI'S INTENTION TO
RETIRE BIT END OF THE CALENDER
YEAR.
HE HAS BEEN DIRECTOR FOR NIAID
FOR 40 YEARS AND HE HAS BEEN AT
NIH FOR OVER 50.
OBVIOUSLY HIS PENDING DEPARTURE
WILL REPRESENT A TRANSITION
PERIOD FOR NIH AND IN DEED FOR
THE WHOLE OF GOVERNMENT.
ANDREA NORRIS WHO SERVES AS THE
CHIEF INFORMATION OFFICER AS
WELL AS THE DIRECTOR OF THE
CENTRE FOR TECHNOLOGY WILL
RETIRE AT THE END OF THE YEAR.
ANDREA REALLY OVERSAW THE
MATURATION AND EVOLUTION OF OUR
CENTRE FOR INFORMATION
TECHNOLOGY FROM WHAT HAD BEEN
LARGELY A RUN AN E-MAIL AND MAKE
SURE IT DOESN'T CRASH SYSTEM TO
WHAT IS A BONIFIED STATE OF THE
ARTERY SEARCH I.T. NETWORK
TOGETHER WITH OUTREACH TO THE
EXTRAMURAL COMMUNITY IN THE FORM
OF A STRIDES INITIATIVE WHICH
HAS ENABLED, MANY, MANY
ORGANIZATIONS TO ENTER THE CLOUD
ENVIRONMENT AT SOME DEEP
DISCOUNTS AND ANDREA HAS DID NOT
TREMENDOUS AMOUNT OF
INTERVENTION AND WILL BE GREATLY
MISSED.
WITH DEPARTURES COMES THE
OPPORTUNITY FOR NEW COLLEAGUES
AND THE FIRST IN THAN THIS LINE
IS Dr. MONICA BERTAGNOLLI WHO
HAS BEEN APPOINTED AS THE
DIRECTOR OF THE NATIONAL CANCER
INSTITUTE.
MONICA HAS HIT THE GROUND
RUNNING AND IS DEEPLY ENGAGE AND
ALL NCI-RELATED ACTIVITIES AS
WELL AS THE PRESIDENT'S MOONSHOT
TO CHANGE CANCER AS WE KNOW IT
AND WE ARE DELIGHTED TO GET
SOMEONE OF MONICA'S STATURE AND
ABILITY TO JOIN NIH.
WE ARE VERY PLEASED TO LET YOU
KNOW Mr. KEVIN WILLIAMS IS A
NEW APPOINTEE AS THE DIRECTOR OF
THE OFFICE OF EQUITY, DIVERSITY
AND INCLUSION.
KEVIN BRINGS TREMENDOUS AMOUNT
OF EXPERIENCE IN THIS SPACE AND
WE LOOK FORWARD TO WORKING WITH
HIM AS PART OF THE TEAM
INSTILLING EQUITY, INCLUSION,
AND ACCESSIBILITY ACROSS THE
AGENCY.
WITH THE DEPARTURE OF Dr.
MICHAEL GODESSMAN, WE HAVE
APPOINTED CURRENTLY Dr. NINA
SHORE AND PRIOR TO ASSUMING THIS
RESPONSIBILITY AND THE DEPUTY
DIRECTOR FOR THE NEUROLOGY INNS
SUITETAUGHT.
SHE BRINGS A WEALTH AT NIH THE
POSITION AND ALSO A PRIOR ROLE.
SHE WAS CHAIR OF PEDIATRICS
UNIVERSITY OF ROCHESTER AND
WHILE WE DIDN'T OVERLAP THERE WE
KNOW A NUMBER OF FOLKS.
AGAIN, FILLING THE VOID LEFT BY
JIM ANDERSON'S PARTNER WE HAVE
APPOINTED Dr. BOB EISINGER AND
BOB HAS HAD A VERY DISTINGUISHED
CAREER AT NIH AND HAD SPENT SOME
TIME DURING HIS TEN YOUR HERE SO
WE ARE DELIGHTED THAT HE IS NOW
IN THIS ACTING ROLE.
NEXT, PLEASE.
ALSO, THE PRESIDENT HAS
APPOINTED THE INAUGURAL DIRECTOR
OF THE ADVANCED RESEARCH
PROJECTS AGENCY FOR HEALTH OR
ARPA-H.
Dr. RENEE WEGRZYN.
SHE'S STARTED AND BEEN ABLE TO
REALLY HIT THE GROUND RUNNING
BECAUSE OF ALL THE OF THE WORK
THAT THE ACTING PRINCIPLE
DIRECTOR OF NIH Dr. TARA
SCHWETZ AND HER GOOD COLLEAGUES
AT ARPA-H HAVE DONE.
THE ACTING DEPUTY DIRECTOR AND
SO IF THE ADMINISTRATIVE
INFRASTRUCTURE IS IN PLACE, AND
OF COURSE, NOW, Dr. WEGRZYN
WILL PLOT THE SCIENTIFIC AGENDA
AND COURSE AND WE LOOK FORWARD
TO WORKING WITH HER GOING
FORWARD.
NEXT, PLEASE.
THIS FINAL APPOINTMENT IS NOT AN
NIH APPOINTMENT BUT IT'S AN
APPOINTMENT MADE BY THE
PRESIDENT.
Dr. PRABHAPAR AND SHE'S THE
SCIENCE ADVISER TO THE PRESIDENT
AND AS A CONSEQUENCE OF THAT,
Dr. COLLINS' ROLE AS THE
ACTING CHIEF OF SCIENCE ADVISORY
TO THE PRESIDENT HAS COME TO A
CONCLUSION BUT HE REMAINS AT THE
WHITE HOUSE ON A PART-TIME BASIS
WORKING ON A SPECIAL PROJECT FOR
THE ADMINISTRATION.
SO WE WELCOME THIS NEW
APPOINTMENT.
SO NOW A LITTLE BRAGGING TIME.
TWO OF THE NOBEL PRIZES IN
CHEMISTRY, TWO OF THE THREE, ARE
INDIVIDUALS WHO HAVE EXTENSIVE
SUPPORT FROM THE NIH.
Dr. CAROLYN BERTOZZI AND
BARRIE SHARPLESS.
THEY HAD SOMETHING CALLED CLICK
CHEMISTRY AND Dr. BERTOZZI HAS
USED THIS AS A WAY OF
IDENTIFYING CARBOHYDRATE
DECORATED STRUCTURES WITHIN
PHYSICAL LOGIC SYSTEMS AND CELLS
AND MODEL SYSTEMS AND I AM
PARTICULARLY DELIGHTED IN
CAROLINE'S WIN HERE AS I'VE
KNOWN HER FOR QUITE A FEW YEARS
AND IN FACT I'VE COLLABORATED
WITH HER ON A COUPLE OF THINGS
SO WE'RE VERY PLEASED TO ADD
THESE TO THE NOBEL PRIZE LIST OF
INDIVIDUAL SUPPORTED BY NIH.
ALSO, THE LAST REWARDS FOR BASIC
MEDICAL RESEARCH WERE ANNOUNCED
AND ALL THREE GENTLEMAN WHO
WORKED IN THE AREA OF BIOLOGY
HAVE BEEN SUPPORTED OVER THERE
CAREERS BY DIFFERENT INSTITUTES
AND CENTRES OF NIH.
A BIG SHOUT OUT TO Dr. CLIFF
LANE WHO IS KNOWN VERY WELL TO
THE BOARD AND CLIFF WAS AWARDED
THE SERVICE TO AMERICA HONOUR.
I COULDN'T THINK OF NO ONE WHO
MORE DESERVES THIS.
HE IS THE CONSU AND HE HAS PLAYE
ROLE IN THE NATION'S RESPONSE TO
ANY NUMBER OF INFECTIOUS DISEASE
CRISIS AND PARTICULARLY EBOLA
AND EARLIER IN HIV AND WE'RE
JUST DELIGHTED THAT CLIFF WAS
HONOURED IN THIS MATTER.
NEXT, PLEASE.
AND JUST THE OTHER DAY WE
LEARNED THAT FOUR MEMBERS OF THE
NIH'S STAFF DISPLAYED HERE AND
THEY ARE NEW INDUCTEES INTO THE
NATIONAL ACADEMY OF MEDICINE AND
Dr. CARLOS BLANKO, EUGENE
KOONIN, BRUCE TROMBERG, JENNIFER
WEBSTER-CYRIAQUE SO
CONGRATULATIONS TO ALL OF THESE
INDIVIDUALS.
SO NOW JUST VERY BRIEF OVERVIEW
AND UPDATE IF YOU WILL OF SOME
OF THE DIVERSITY, EQUITY,
INCLUSION AND ACCESSIBILITY
ACTIVITIES ACROSS THE ENTIRE
AGENCY.
SO, OF COURSE YOU ALL APPRECIATE
THE COMPLEXITY OF ENHANCING
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY AND WE HAVE
DEVELOPED WITH THE HELP OF MANY,
MANY PEOPLE AN OVER ALL
STRATEGIC PLAN FRAMEWORK FOR THE
AGENCY.
AND IN THE THREE CORE PRINCIPLES
OF THIS ARE IMPLEMENT
ORGANIZATIONAL PRACTISES THAT
CENTRE IN PRIOR TIES DEA/IA IN
OUR WORK FOR AND THE SECOND IS
TO GO AND SUSTAIN THROUGH
STRUCTURAL AND CULTURAL CHANGE
AND AS A RESEARCH ORGANIZATION
WE WANT TO ADVANCE THE DEIA
THROUGH RESEARCH ACTIVITIES.
SO JUST BY WAY OF EXAMPLE, OF
SOME OF THE THINGS WE'RE DOING
AND THIS IS JUST -- WE HAVE HELD
MANY STAKEHOLDER READINGS, TOWN
HALL MEETINGS, INTENSIVE
DISCUSSION GROUPS, ET CETERA.
UNIFORMLY THERE'S BEEN THE
STRONG RECOMMENDATION THAT WE BE
MORE FOURTH COMING AND
TRANSPARENT ABOUT THE WORKPLACE
DEMOGRAPHICS OF THE AGENCY.
AND SO WHAT I WILL SHARE WITH
YOU ON THIS SLIDE AND THE NEXT
ARE EXAMPLES OF THE TYPES OF
DATA THAT WE ARE NOW UPDATING
PERIODICALLY ON A QUARTERLY
BASIS AND ARE SHARING WITH THE
ENTIRE WORKFORCE HERE AT NIH.
AND SO THIS IS THE OVER ALL
WORKFORCE OF THE AGENCY AND
FOURTH QUARTER OF 2021 AND AS A
FUNCTION OF RACE AND ETHNICITY
AND SEX AND ALSO AS A FUNCTION
OF DISABILITY STATUS AS
REPORTED.
AND THESE DATA I REALLY JUST
OBVIOUSLY A STARTING POINT AND
BECAUSE IF YOU ONLY KEEP THE
ANALYSIS AT THIS LEVEL,
, YOU LOOK AT IT AND YOU THINK
WELL, YOU KNOW, MAYBE THE
ORGANIZATIONS ARE DOING NOT TOO
BAD A JOB AWE THOUGH CLEARLY THE
HISPANIC LATINO OVER ALL NUMBERS
ARE TOO LOW RELATIVE TO THE
OTHER GROUPS.
BUT THAT DOESN'T TELL THE WHOLE
STORY SO IF YOU GO TO THE NEXT
SLIDE, PLEASE, HERE WE HAVE
STRATIFIED THE WORKFORCE BY JOB
CATEGORY TO GET A BETTER
UNDERSTANDING OF THE RACE AND
NICE TEE ACROSS DIFFERENT
CATEGORIES WHILE WE COULD SPLIT
THIS IN MANY DIFFERENT WAYS,
WE'VE OPTED TO LOOK AT THIS IN
THREE DISTINCT CATEGORIES NAME'
SCIENTIFIC OCCUPATION AND HEALTH
AND RESEARCH OCCUPATIONS AND
INFRASTRUCTURE OCCUPATIONS.
THIS REVEALS THAT IN THE WHO ARE
BACK OR AFRICAN AMERICAN OR WHO
ARE HISPANIC OR LATINO.
AND YOU KNOW, IF YOU JUST LOOK
AT THE DEMOGRAPHICS YOU DON'T
RECOGNIZE THAT.
THE REPRESENTATION OF BLACK AND
AFRICAN AMERICANS IS BUT STILL
HISPANIC AND LATINO LAG HYPED
WHERE WE WOULD EXPECT BASED UPON
THE OVER ALL DEMOGRAPHICS AND SO
WE KNOW WE HAVE WORK TO DO SO BY
MAKING THIS DATA AVAILABLE AND
MAKING THIS TRANSPARENT, WE HOPE
TO RAISE AWARENESS AND IN OUR
CONTINUING EFFORT TO DIVERSIFY
THE OVER ALL WORKFORCE HERE AT
NIH.
IF I CAN HAVE THE NEXT SIDE,
PLEASE.
NOW, WE WANT TO EFFECT CULTURAL
CHANGE ALSO AND CULTURAL CHANGE
IS THE MOST COMPLEX ASPECT OF
WALL OF THIS AND I KNOW ALL OF
YOU ON THE BOARD UNDER THIS
BECAUSE YOU GRAPPLE WITH THIS AT
YOUR OWN INSTITUTIONS, I WOULD
IMAGINE.
AND WHAT WE HAVE DONE IS WE
CREATED THIS UNITE INITIATIVE
WHICH IS DESIGNED TO IDENTIFY
AND ADDRESS STRUCTURAL RACISM
BOTH WITHIN THE NIH SUPPORTED
AND GREATER SCIENTIFIC COMMUNITY
AND THEY HAVE THE GOAL OF
ESTABLISHING AN EQUITABLE AND
CIVIL CULTURE FOR BIOMEDICAL
RESEARCH THAT WILL REDUCE
BARRIERS TO RACIAL EQUITY
BIOMEDICAL RESEARCH WORKFORCE.
NOW, WHAT YOU SEE ON THE RIGHT
IS A NEW PORTRAITURE THAT IS
APPEARING ACROSS THE CAMPUS.
YOU MIGHT WONDER, YOU KNOW, SORT
OF FIRST LEN LENSE, WHY AM I
SPENDING TIME TALKING ABOUT
PORTRAITURE, I WANT TO QUOTE
FROM YOU FROM A FIRST OPINION
PIECE THAT Dr. SUDAAN JACKSON,
WHO IS A NEURO ONOLOGIST HERE IN
THE CLINICAL CENTRE.
SHE WROTE THIS.
IT'S ENTITLED "THE POWER OF
INCLUSION, OVER TURNING THE
WHITE WALL STANDARD" AND I'M
GOING TO QUOTE FROM HER PIECE
JUST SO THAT YOU GET AN
UNDERSTANDING.
OLDER WHITE MEN LINE EACH AND
EVERY WALL.
THE PORTRAIT THESE DUDE WALLS
ARE THE STANDARD AMONG LARGE AND
SMALL ESTABLISHMENTS AND THESE
LUMINARIES WORK DILIGENTLY TO
SHAPE SUCCESSES BUT WHAT MAKES
ONE WONDER, WHO IS
HAVE BEEN EXCLUDE INSIDE WHAT
HISTORICAL CONTEXT.
AND IT IS BASED ON THESE IDEAS
THAT WE HAVE FAILED TO
ACKNOWLEDGE THE EXTRAORDINARY
TALENT AND DIVERSITY AND CON
PRACTISE BUYINGS OF SO MANY
OTHER PEOPLE AT THE AGENCY AND
WE EMBARKED ON THIS TOGETHER
WE'RE STRONGER INITIATIVE, WHERE
WE ARE NOW DEPICTING
PORTRAITURES OF THOSE WHO HAVE
MADE EXTRAORDINARY CONTRIBUTIONS
FOR THE AGENCY AND SO THE NEXT
TIME YOU ARE ON CAMPUS
IN-PERSON, I HOPE THAT YOU WILL
TAKE THE TIME TO WORK SOME OF
THE HALLS WHERE THESE.
THEY'RE POWERFUL AND MEANINGFUL
TO ALL OF US AT THE AGENCY.
IF I CAN HAVE THE NEXT SLIDE,
PLEASE.
WE HAVE EMBARKED ON A NUMBER OF
RESEARCH ACTIVITIES.
AS YOU MIGHT IMAGINE, WE
CONTINUE EFFORTS TO DO RESEARCH
AND INTERVENTIONS TO ADDRESS
HEALTH DISPARITIES AND HEALTH
INEQUITIES BUT WE'RE CREATING AN
ENVIRONMENT THAT WILL ENHANCE
OUR ABILITY TO ACHIEVE
DIVERSITY, EQUITY, INCLUSION AND
ACCESSIBILITY.
AND ONE OF THE WAYS THAT WE HAVE
PILOTED IN OUR INTRAMURAL
PROGRAMME IS THROUGH HIRING OF
CRITICAL MASSES OF EARLY CAREER
FACULTY DEMONSTRATED A
COMMITMENT TO INCLUSIVE
EXCELLENCE AND WE'VE NOW
EXPANDED THIS INTO THE
EXTRAMURAL COMMUNITY HAVING
PILOTED ITS SUCCESS FOR THE
INTRAMURAL PROGRAMME THROUGH
WHAT IS KNOWN AS THE FIRST
AWARD, FACULTY INSTITUTIONAL
RECREWMENT FOR SUSTAINABLE
TRANSFORMATION AND I HAVE TO
SAY, HAVING GONE THROUGH ONE
ROUND OF FUNDING THIS FAR, THE
ONLY REAL CRITICISM WE'VE GOTTEN
ABOUT THIS IS WE HAVEN'T AWARDED
ENOUGH OF THEM BECAUSE THERE ARE
SO MANY INSTITUTIONS WHO WOULD
BENEFIT AND WOULD REALLY WELCOME
THE OPPORTUNITY TO PARTICIPATE
IN THIS ACTIVITY.
SO, AGAIN, THESE ARE JUST
SNAPSHOTS OF SOME MANY THINGS
THAT WE'RE DOING AT THE AGENCY
AND I DID WANT YOU TO SEE AT
LEAST EXAMPLES OF SOME OF THESE
EFFORTS BECAUSE OF THE
IMPORTANCE THAT NIH AFFORDS TO
THESE OVER ALL EFFORTS.
IF I HAVE THE NEXT SLIDE,
PLEASE.
JUST TO CONCLUDE TO UNDERSCORE
OUR CONTINUE TO COMMITMENT TO
EARLY STAGE INVESTIGATOR WITHIN
NIH AND THE INTRAMURAL IMPORTANT
BUT IMPORTANTLY ALSO
EXTRAMURALLY AND SO THIS IS THE
EARLY STAGE INVESTIGATORS THAT
HAVE BEEN FUNDED TO THEIR FIRST
RO1 FOR THOSE WHO ARE UNFAMILIAR
WITH THE JARGON, THAT'S THE
FIRST INDEPENDENT GRANT GOLD
STANDARD GRANT AND AS YOU CAN
SEE, IT'S THROUGH THE MID 2010,
WE REALLY WERE EITHER SORT OF
BUMPING AROUND AN AVERAGE OR IN
FACT LOSING GROUND WITH RECI SEC
ON BUT MADE THE DECISION THAT WE
HAD TO START GROWING EARLY-STAGE
GROWING AS RESULT OF ANALYSIS
DONE THROUGH TWO WORKING GROUPS
AND ANALYSIS BY THE OFFICE OF
EXTRAMURAL RESEARCH.
SO, THE GOAL HAD BEEN TO FUND AT
LEAST 1,100 NEW EARLY STAGE
INVESTIGATORS EACH YEAR AND THIS
IS STEADILY TO THE POINT NOW
WERE IN 2022, WE WERE ABLE TO
FUND A RECORD NUMBER OF ESI
APPLICANTS, 1,589 AND THE
DIRECTORS HAVE PLEDGED TO
CONTINUE THIS COMMITMENT WITH
THE GOAL OF FUNDING AS MANY
MERITORIOUS EARLY-STAGE
INVESTIGATOR APPLICATIONS AS
POSSIBLE.
WE'RE ALSO TAKING A LOOK AT
INVESTIGATORS WHO MIGHT BE AT
RISK.
FOR EXAMPLE, THEY HAVE ONE
GRANT, THEY MAY BE LOSING IT,
MAKE SURE WE DON'T LOSE THEM
FROM THE SYSTEM AND THEN
FINALLY, WE ARE MAKING A
COMMITMENT TO REALLY TRY TO
BALANCE OUR PORTFOLIOS BY FUND
ORGANIZATIONS THAT PERHAPS THEY
SERVE THE UNDERSERVED
COMMUNITIES SUCH AS HBCU,
HISPANIC SERVING INSTITUTIONS,
TRIBAL COLLEGES AND INSTITUTIONS
TO RURAL AREAS AND SO FOURTH SO
REALLY TO TRY AND BALANCE OUR
DIVERSITY OF THOUGHT IN EVERY
POSSIBLE DIMENSION AND SO THIS
IS JUST ON GOING AND I THOUGHT
YOU MIGHT BE INTERESTED IN THAT.
AND IF I CAN HAVE JUST THE LAST
SLIDE, PLEASE.
SO WITH THAT I WANT TO THANK YOU
FOR YOUR ATTENTION AND WE'LL
TURN IT BACK TO THE CHAIR IF
THERE ARE ANY QUESTIONS OR
COMMENTS, I WOULD BE HAPPY TO
ENTERTAIN THOSE.
THANK YOU.
>>THANK YOU SO MUCH DR. TABAK.
THIS IS A GREAT DELIVERY THIS
MORNING OF THESE TOPICS AND
PARTICULARLY, THE
THOUGHT-PROVOKING ONCE AROUND
DEIA AND YOU ARE ABSOLUTELY
RIGHT, WE'RE ALL GRAPPLING WITH
THIS.
I'LL OPEN THE FLOOR.
ANY QUESTIONS FOR DR. TABAK?
>>JUST ONE, LARRY.
FORGIVE ME IF I MISSED IT BUT
WHEN YOU TALK ABOUT THE 1589
EARLY STAGE GRANTS, DO YOU TRACK
DIVERSITY OF THE INVESTIGATOR AS
WELL?
>>YES, WE CERTAINLY DO.
THE GOOD NEWS IS, THAT THE EARLY
STAGE POOL IS MORE ENRICHED AND
PEOPLE FROM THE TRADITIONAL
UNDER REPRESENTED GROUPS THEN IS
OUR TYPICAL COHORT OF
INVESTIGATORS.
THE BAD NEWS IS A ABSOLUTE
NUMBERS THERE ARE STILL FAR TOO
FEW INDIVIDUALS WHO ARE BLACK OR
AFRICAN AMERICAN OR HISPANIC OR
NATIVE AMERICAN AND ALAS KA
NATIVES AND SO FOURTH.
IN TERMS OF ABSOLUTE NUMBERS, WE
STILL HAVE A LONG WAY TO GO BUT
IN TERMS OF PERFORMING, THE
NEWEST CO-HOST IS ENRICHED
RELATIVE TO OUR TRADITIONAL
POOL.
>>WE HAVE A RESPONSIBILITY TO
BRING IN DIVERSE FACULTY OR
EARLY STAGE SO THEY CAN BE
CANDIDATES FOR THE GRANTS SO
IT'S A LITTLE BIT FURTHER UP.
>>REALLY APPRECIATE YOU SAYING
THAT BECAUSE I GET BOOED OFF THE
STAGE WHEN I SAY THAT BUT IT'S A
PARTNERSHIP AND THERE'S NO
QUESTION ABOUT THAT AND AS
THEY'RE BEING TRAINED, YES, THEY
NEED A PLACE TO GO AND CERTAINLY
MANY OF THEM, WE HOPE, THEY WILL
ASPIRE TO AND WE HOPE AND FIND A
POSITION AT UNIVERSITIES ACROSS
THE NATION TO LAUNCH WHAT WE
HOPE IS A LONG AND PRODUCTIVE
ACADEMIC CAREER.
>>THANK YOU.
>>DR. TABAK, THERE'S A QUESTION
IN THE CHAT SO FIRST GRANTS ARE
FOR TR EXTRA OR INEXTRAMURAL
SUPPORT?
>>FIRST GRANTS IS THE
EXTRAMURAL PROGRAMME THAT HAS
BEEN PATTERNED AFTER AN EFFORT
THAT WE DID THAT WE STARTED
INEXTRAMURALLY SO THERE ARE
THESE AWARDS FOR THE EXTRAMURAL
COMMUNITY.
WE OFTEN PILOT THINGS IN OUR
INTRAMURAL AND WE LEARN FOR THE
EXTRAMURAL PROGRAMMES.
>>THANK YOU.
ARE THERE ANY OTHER QUESTIONS?
>>THIS IS DAVID CHIN.
THAT WAS A TERRIFIC PRESENTATION
AND PARTICULARLY AS STEPHANIE
MENTIONED AROUND THE DEI
INITIATIVES AND YOU MENTIONED
THAT THE NIH IS DOING RESEARCH
AROUND BEST PRACTISES AND
BRINGING UP THE TALENT.
I WONDER IF THIS IS INCAPSULATED
IN BEST PRACTISES FOR ACADEMIC
MEDICAL CENTRE FOR THE REST OF
THE COUNTRY IN TERMS OF THE TIME
OF ECOSYSTEM AROUND THE NIH.
YOU HAVE TO BE ONE OF THE
DOMINANT EMPLOYERS AROUND
BETHESDA AND ALL LINKS TO ALL OF
THE UNIVERSITIES, ET CETERA,
AROUND THERE AND ARE THERE BEST
PRACTISES THAT YOU ARE LEARNING
FROM THAT ENVIRONMENT TO THEN
SHARE WITH THE REST OF THE
ACADEMIC MEDICAL CENTRES IN THE
COUNTRY?
>>YEAH, I MEAN, I DON'T WANT TO
PRETEND THAT WE HAVE THE ANSWERS
YET BUT IT IS VERY MUCH STILL A
WORK IN PROGRESS AND WE HAVE
LEARNED, I THINK, A GREAT DEAL
ALREADY AND IT STARTS, AS I KNOW
YOU APPRECIATE, BY LISTENING.
LISTENING TO ALL STAKEHOLDERS
AND NOT THE USUAL SUSPECTS.
AND THEN, YOU HAVE TO EMPOWER
PEOPLE TO MAKE THE SUBSTANTIVE
CHANGES THAT ARE REQUIRED TO
ACTUAL LOW CHANGE THINGS.
IT'S EASY TO TALK ABOUT IT BUT
IT ACTUALLY CHANGE THINGS THAT
IS MORE COMPLICATED.
SO REPRESENTATION ON COMMITTEES,
REPRESENTATION ON TRAINING
PROGRAMMES.
JUST BY WAY OF EXAMPLE, THROUGH
OUR LISTENING SESSIONS WE
LEARNED THAT PEOPLE, AT A
CERTAIN GRADE LEVEL WERE NOT
BEING AFFORDED THE OPPORTUNITY
FOR CAREER ADVANCEMENT TRAINING,
LEADERSHIP TRAINING IF YOU WILL.
WE HAD TO CUT OFF AT A LEVEL
THAT WAS A LITTLE TOO HIGH AND
LEFT OUT THE OVER WE WILLING
MAJORITY OF AFRICAN AMERICAN AND
HISPANIC AND ALASKA STAFF
BECAUSE THEY WERE AT LOWER GRADE
LEVELS SO WE HAVE A PROGRAMME
THAT WILL CAPTURE THAT MORE
ENTRY LEVEL GRADE LEVEL IN
LEADERSHIP-STYLE TRAINING.
THERE ARE MANY, MANY EXAMPLES OF
THIS AND I'M SURE THAT GILMAN
CAN POINT TO ACTIVITIES.
I KNOW THEY HAVE BEEN ACTIVE
PARTICIPANTS IN THIS.
AS WE GO THROUGH THIS WORK, WE
ARE CATALOGING AND ULTIMATELY WE
HOPE, TO BE ABLE TO DEVELOP
SOMETHING THAT WE CAN SHARE WITH
EVERYBODY.
>>THERE'S ONE ADDITIONAL
COMMENT IN THE CHAT.
IT WOULD BE HELPFUL TO KNOW WHAT
PERCENTAGE OF APPLICATIONS ARE
SUCCESSFUL IN FIRST GRANTS.
>>SO, WHEN YOU SAY AN
EARLY-STAGE INVESTIGATOR, THEIR
FIRST GRANT?
IS THAT THE QUESTION?
>>THIS IS FROM DAVID.
DO YOU WANT TO CLARIFY.
>>PARDON ME.
YES, WHAT YOU PRESENTED WAS
USEFUL IN SHOWING THE HISTORY
BUT IT DIDN'T SHOW A COMPARISON
BETWEEN THE GRANT APPLICATIONS
AND THE NUMBER OF SUCCESSFUL
GRANTS.
>>SO, THE SUCCESS RATE FROM
ASIs IS GREATER THAN THE
GENERAL POOL.
IT'S FIVE POINTS HIGHER AND
MAYBE SLIGHTLY MORE THAN THAT.
AND WE DO THIS BY REACHING THE
STANDARD PAYLINES GIVING
PREFERENCE TO THE EARLY STAGE
INVESTIGATOR BUT IN DOING THAT,
I WANT TO EMPHASIS WE'RE STILL
WITHIN WELL WITHIN THE RANGE OF
THINGS THAT WE WOULD BE VERY
COMFORTABLE FUNDING FOR
EVERYBODY IF WE HAD SUFFICIENT
RESOURCES.
HISTORICALLY, WE HAVE FOUND OVER
THE LAST 30 YEARS OR SO, THAT IF
YOU FUND AT LEAST 30% OF YOUR
GRANTS THEY'LL BE IN GREAT
SHAPE.
THE TOP 30%.
AND THANKS, TARA, SO Dr. SWETZ
HAS PUT DATA IN THE CHAT AND I
REALLY THINK THAT YOU MIGHT WANT
TO CLICK ON THAT AND TACK A
LOOK.
WE EXTEND THAT PAYLINE FOR THE
EARLY STAGE INVESTIGATORS TO
CAPTURE MORE OF THEM BUT WE'RE
STILL WITHIN THAT WELL WITHIN
THAT ENVELOPE OF THE TOP THIRD
OR SO OF APPLICATIONS.
>>THANK YOU.
THANK YOU, TARA FOR THE STUFF.
>>I'LL KEEP US ON TIME BUT
THERE'S ONE QUESTION FROM AN --
HOW CAN THEY APPLY FOR THESE
GRANTS?
>>RIGHT.
SO WHAT WE'LL DO IS WE'LL PASTE
IN THE CHATBOX SOME LINKS TO THE
FUNDING OPPORTUNITIES
ANNOUNCEMENTS AND THAT SORT IS
THE FIRST STEP AND THOSE FUNDING
OPPORTUNITY ANNOUNCEMENTS HAVE
CONTACT INFORMATION FROM
PROGRAMME OFFICERS WHO CAN BE
SPOKEN WITH TO GET ADDITIONAL
INFORMATION SO WE'LL PASTE THAT
IN THE CHAT FOR YOU.
>>THANK YOU, DR. TABAK, I
APPRECIATE IT AND THANK YOU FOR
THE QUESTIONS AND DISCUSSION,
I'D LIKE TO TURN IT OVER TO THE
C.E.O., JIM GILMAN, TO GIVE THE
C.E.O.s UPDATE.
>>THANK YOU, VAN.
I THINK THE SLIDES WILL COME UP.
I WANT TO THANK AGAIN ALL THE
BOARD MEMBERS PAST AND PRESENT
FOR ATTENDING TODAY.
I THINK STEVE GOLDSTEEN IS MAYBE
STILL NOT ON AND WE GOT NOTICE
THAT HE INTENDS TO JIN A LITTLE
BIT LATER.
I WANT TO SAY A SPECIAL THANK
YOU TO RICK SHANNON, AND PUT THE
REST OF YOU ON NOTICE THAT IS
WHEN I HAVE HAD SPECIFIC
QUESTIONS AND NEEDED HELP, RICK
SHANNON HAS BEEN ONE OF THE
PEOPLE THAT I HAVE ON SPEED DIAL
AND I REACHED OUT TO A FEW TIMES
IN ORDER TO GET ADVICE OR
RECOMMENDATIONS AND RICK HAS
ALWAYS, ALWAYS BEEN THERE FOR
ME.
SO, WITH RICK ROTATING OFF THE
BOARD, I WON'T LOSE HIS NUMBER,
I ASSURE YOU, BUT I MAY BE
GIVING SOME OF THE REST OF YOU A
PHONE CALL AS WELL.
AGAIN, I WANT TO THANK Dr.
COOTS FOR AGREEING TO SHARE THE
BOARD.
AS THERE ARE TRANSITIONS, DR.
TABAK HIGHLIGHTED THEM AT THE
NIH LEVEL AND WE HAVE HAD OUR
SHARE AS WELL.
THE TWO NEW ONCE ON THIS LIST
AND WE ARE MAKING PROGRESS, I
THINK WE'RE MAKING GOOD PROGRESS
ON THE CHIEF NURSING OFFICER,
AND THE CHIEF PHARMACY
DEPARTMENT.
BUT SINCE THE LAST TIME WE GOT
TOGETHER AND HOSPITAL
EPIDEMIOLOGIST AND CHIEF OF THE
DEPARTMENT OF TRANSFUSION
MEDICINE BOTH HAVE BEEN HERE A
COUPLE OF YEARS AND THE HOSPITAL
EPIDEMIOLOGIST POSITION HAS BEEN
ANNOUNCED AND WE HAVE A
NUMBER -- WE HAVE SOME GOOD
APPLICANTS AND THAT POSITION IS
RIGHT NOW BEING FILLED BY Dr.
DAVID HENDERSON, WHO WAS THE
LONG-TIME DEPUTY DIRECTOR FOR
CLINICAL CARE IN THE CLINICAL
CENTRE.
THAT'S THE TITLE WE USED FOR THE
CHIEF MEDICAL OFFICER.
WAS ALSO THE HOSPITAL
EPIDEMIOLOGIST FOR MUCH OF THE
LAST 25 YEARS.
Dr. DAVID STRONGCHECK I'D LIKE
TO CLOSE AS I START ANOTHER ONE.
I DON'T THINK WE'LL HAVE TIME TO
TALK ABOUT IT THIS MORNING BUT I
WANT YOU TO KNOW THAT OUR RETURN
TO WORK EFFORTS CONTINUE AS
WE'VE GOTTEN USED TO WORKING
FROM HOME OR WORKING AND USING
OUR VIRTUAL TOOLS.
WE KNOW WE CAN WORK THAT WAY BUT
FRANKLY, I THINK WE'RE DOING
MORE OF THAT WORK IN THAT MANNER
THAN IS DESIRABLE AND TRYING TO
GET THE PENDULUM STOPPED SO IT
CAN SWING BACK THE OTHER
DIRECTION IS SOMETHING THAT
WE'LL TALK ABOUT DURING MY
PRESENTATION BUZZ I SUSPECT
GIVEN WHAT THE TIME LOOKS LIKES
WE WON'T GET A CHANCE TO DISCUSS
A LOT.
SO WE DO HAVE OUR UPCOMING 2022
HONOURS PROGRAMME, THE CLINICAL
RECOGNITION AND ADMINISTRATOR OF
THE YEAR.
THIS PROGRAMME WAS STABBED A FEW
YEARS AGO WHEN WE HAD AND IT IS
TO HONOR THOSE.
IT HONORS STAFF FOR SCIENTIFIC
CONTRIBUTIONS AND SCIENTIFIC
ACHIEVEMENTS AND AND SO, THOSE
AWARDS ARE COMING UP AND
ACTUALLY THEY'LL BE MADE NEXT
WEEK AND DR. TABAK HAS MADE A
NICE VIDEO TO HELP US ROLL THAT
OUT.
STAFF MEMBERS ARE GETTING A LOT
OF RECOGNITION AGAIN THIS YEAR
FOR SERVICE DURING THE COVID-19
PANDEMIC AND THE NIH DIRECTOR A
WORDS AND THAT INCLUDES FOUR
INDIVIDUAL AWARDS AND 153
MEMBERS WHO PARTICIPATED IN
VARIOUS GROUP EFFORTS THAT WILL
BE RECOGNIZED AND I COMPLETED MY
PORTION OF THE VIDEO FOR THAT
ACKNOWLEDGMENT EARLIER THIS
WEEK.
WE WILL HAVE OUR C.E.O. AWARDS,
THE CLINICAL CENTER C.E.O.
AWARDS THESE ARE MY AWARDS TO
GIVE.
IT WILL BE DONE VIRTUALLY AGAIN
THIS YEAR AND THIS IS ABOUT THE
USUAL NUMBER OF NOMINEES AND
NUMBER OF STAFF MEMBERS TO BE
RECOGNIZED.
AND NOT ALL OF THOSE WILL BE
CLINICAL CENTER STAFF MEMBERS,
SOME OF THEM COME FROM OTHER
INSTITUTES AND CENTERS BUT
THEY'RE CONTRIBUTING TO THE
CLINICAL CENTER MISSION.
NEXT SLIDE.
THIS IS OUR AVERAGE DAILY CENSUS
AND IT'S TRACKING WHAT WE WERE
LAST YEAR.
WHEN WE GET TO THIS SLIDE THAT
HAS ALL THE NUMBERS ON IT, YOU
CAN SEE THAT OUR OUT PATIENT
VISITS WERE UP SIGNIFICANTLY
OVER 2021 AND THE NUMBER OF NEW
PATIENTS THAT WE SAW IN 2022 WAS
ALSO UP OVER 2021.
THE EARLY PART OF 2022 IS
LOOKING A LITTLE BIT BETTER IN
TERMS OF ADMISSIONS AND IT IS
TOO EARLY IN THE FISCAL YEAR TO
NOTE SO NEXT SLIDE, SO HERE YOU
CAN SEE THAT OUR OUT PATIENT
CLINICAL VISITS WERE UP 15% AND
OUR NEW PATIENTS UP 10%.
I THINK OUR AVERAGE LENGTH OF
STAY CONTINUES TO DROP A LITTLE
BIT AND I THINK THAT'S PARTLY
BECAUSE WE DON'T HAVE PEOPLE IN
THE HOSPITAL AS MUCH WHO DO NEED
TO BE IN THE HOSPITAL AND I
THINK THAT'S GENERALLY A GOOD
THING.
IT WILL BE NICE WITH THAT
AVERAGE DAILY CENSUS NUMBER
TURNS BACK AND HEADS THE OTHER
WAY.
THESE ARE TELEHEALTH VISITS.
IT'S STABILIZED THERE IN ABOUT
600 VISITS PER MONTH OR SO.
NEXT SLIDE.
THE CDC CHANGED THEIR
RECOMMENDATIONS WITH REGARD TO
UNIVERSAL MASKING AND HEATH CARE
SETTINGS AND IT WOULD BE
INTERESTING TO KNOW WHAT IS
GOING ON IN THE HEALTHCARE
SETTINGS THAT YOU ALL ARE PART
OF.
WE WOULD BE VERY INTERESTING IN
KNOWING THAT.
WE HAVE NOT CHANGED OUR STANCE
WITH REGARD TO MASKING AND THAT
RELATES TO THE NUMBER OF
IMMUNOCOMPROMISED PATIENTS THAT
ARE HERE AND THE FACT THEY ARE
PRESENT IN MANY YEARS OF THE
HOSPITAL AND THE FACT THAT WE
HAVE DEMONSTRATED OVER THE
COURSE OF THE LAST TWO AND A
HALF YEARS THAT WE ASK KEEP THEM
FROM ACQUIRING COVID-19 IF WE
CONTINUE TO WAR A MASK AND TO WE
MADE THE DECISION NOT TO CHANGE
OUR MASKING POLICY AND THAT HAS
BEEN SUPPORTED BY -- AT THE NIH
LEVEL.
I WAS BACK HOME IN SMALL TOWN IN
INDIANA LAST WEEK WHERE I GREW
UP AND I FIND OUT THEY ADOPTED
THE SAME POLICY AS WELL.
THIS IS A SMALL HOSPITAL AND A
PRETTY RED TATE AND I WAS A
LITTLE SURPRISED TO FIND OUT
THAT THEY'RE STILL MASKING
EVERYBODY.
I'LL GET TO THE QUESTION IN JUST
A MINUTE.
THE CDC GUIDANCE IS BASED ON
TRANSIENT MEASURES OF THE LEVEL
OF COVID-19 TRANSMISSION IN THE
COMMUNITY.
AND I JUST CAN'T SEE ALLOWING,
HAVING PEOPLE TAKE OFF THEIR
MASKS IN OCTOBER WHEN THE VIRAL
ACTIVITY HAS BEEN LOWER AND
PUTTING THEM BACK ON IN NOVEMBER
AND DECEMBER.
THAT JUST DIDN'T MAKE ANY SENSE
TO US, WE DIDN'T THINK THAT WE
WOULD DO THAT.
THE QUESTION IN THE CHAT HAS TO
DO WITH NUMBERS OF STAFF AND WE
ARE FEELING THE CRUNCH FROM
ESPECIALLY, I THINK, IN THE
NURSING STAFF.
WE'VE MADE SOME IMPROVEMENTS IN
SOME OF THE OTHER AREAS OF THE
CLINICAL CENTER AND WE ARE
FACING CHALLENGES IN TERMS OF
RECRUITING AND ACCESSING GOOD
NURSES AND IT'S SHOWING UP IN
SOME SPECIALITY AREAS BUT WE'RE
HAVING CHALLENGE THIS IS THAT
AREA.
THERE WAS A QUESTION ABOUT HOW
WE ENSURE THAT PATIENTS OUR
CLINICAL RESEARCH EFFORTS ARE
SOMEHOW OR ANOTHER COORDINATED
AND SO I PUT TOGETHER THIS SLIDE
WHICH I THINK ILLUSTRATES THE
WAY THAT WE GO ABOUT THIS.
THE LEAD FOR THIS EFFORT IS OUR
INSTITUTIONAL OFFICIAL, THE ONE
WHO IS OUR PRINCIPLE INTERFACE
WITH THE FDA THAT'S Dr. SHORE.
AND THE CLINICAL CENTER HAS A
BIG PART OF THAT AND THE OFFICE
OF PATIENT SAFETY AND CLINICAL
QUALITY UNDER DAVID LANG AND IN
PARTICULAR OUR SAFETY TRACKING
AND REPORTING SYSTEM AND OUR
DAILY PATIENT SAFETY HUDDLE
NOTES, ARE THE COMMUNICATIONS
THAT ARE UTILIZED TO IDENTIFY
ISSUES THAT TEND TO BE ON THE
CLINICAL SIDE.
THOSE SAME COMMUNICATIONS AND
THE STARS REPORTS AND THE
PATIENT SAFETY NOTES ARE FED
DAILY ALSO TO BE THE OFFICE OF
HUMAN RUB AGREE RESEARCH
PROTECTION AND THE OFFICE OF
RESEARCH AND COMPLIANCE LED BY
IT'S ALSO HEAVILY INVOLVED WITH
THIS AREA AND WE HAVE MULTIPLE
NEEDINGS EVERY MONTH AND THE
FORUMS ARE THERE OUTLINED ON THE
LEFT AND AND OFFICE OF RESEARCH
SUPPORT COMPLIANCE AND THE
SAFETY OF CLINICAL QUALITY AND I
THINK THAT WE HAVE THE NECESSARY
FREQUENCY OF COMMUNICATIONS TO
MAKE SURE THAT THEY GET GOOD,
SAFE CARE AND THEY HAVE A
POSITIVE PATIENT EXPERIENCE ANDI
ASK TO TUNE IN IN CASE AT THE
CONCLUSION OF THIS PRESENTATION
THAT THERE WERE QUESTIONS FOR
HIM.
THIS IS THE TOPIC THAT I'M
INTERESTED IN ANY THOUGHTS THAT
YOU HAVE AND WHETHER WE HAVE
TIME TO DISCUSS IT OR WHETHER
YOU WANT TO PUT SOMETHING IN THE
CHAT OR WHETHER YOU WANT TO SEND
SOMETHING BY E-MAIL.
I WOULD REALLY, REALLY
APPRECIATE SOME THOUGHT.
FIRST OF ALL, THE NIH LEADERSHIP
FORUM UNDER DR. TABAK'S
LEADERSHIP DID HAVE A
SIGNIFICANT DISCUSSION ABOUT
THIS RECENTLY AND I WOULD SAY
THAT EVERY NIH INSTITUTE AND
CENTER IS DEALING WITH THE ISSUE
TO SOME EXTENT.
AND I THINK THE IMPORTANT
QUESTIONS ARE THERE AT THE
BOTTOM OF THE SLIDE AND FOR
THOSE FUNCTIONS THAT LARGELY
ADMINISTRATIVE IN NATURE, WE
KNOW WE CAN DO THEM WITHOUT
BEING THERE.
IS THAT REALLY OPTIMAL FOR WHAT
OUR MISSION IS AND WHAT WE'RE
TRYING TO DO.
SO, WE ARE KIND OF MOVING BACK A
LITTLE BIT MORE TOWARDS
IN-PERSON.
WE'RE GOING TO TRY TO RE DOUSE
OUR USE OF ZOOM -- REDUCE OUR
USE OF ZOOM AND SOME OTHER
OPPORTUNITIES.
IT WILL NOT BE VERY EASY.
I THINK THAT THIS IS THE RIGHT
TIME AND THE NEXT SLIDE SORT OF
ILLUSTRATES THE PARADIGM THAT
WE'VE SORT OF DEVELOPED TO THINK
ABOUT THIS.
WE'VE DIVIDED OUR WORK INTO
TRANSACTIONAL WORK AND
RELATIONAL WORK.
ANOTHER WORD IS TEAMWORK.
THE TRANSACTIONAL WORK IS THE
WORK THAT GOES INTO OUR JOB
DESCRIPTION AND THAT RU USES AND
IT'S, WE'RE ENCOURAGED TO FIND
THINGS THAT ARE MEASURABLE AND
YOU ARE SUPPOSED TO REPORT OUT
ON THOSE MEASURES WHEN YOU GET A
PERFORMANCE APPRAISAL.
AND I THINK WE'VE DONE A VERY
GOOD JOB OF USING THE VIRTUAL
TOOLS TO SUPPORT OUR
TRANSACTIONAL WORK AND SOMETIMES
WE'RE GETTING THE WHOLE JOB AND
WE THINK THAT WE'RE
DEMONSTRATING EFFICIENCY.
BUT, THE WAY THAT WE COMMUNICATE
WHEN WE'RE IT'S THE ABILITY TO
WALK DOWN THE TO ASK THE CHIEF
NURSE A QUESTION AT A TIME
WHETHER IT'S FRONT AND CENTER
ARE KIND OF LOST BY THIS
DISTRIBUTE AND VIRTUAL WORLD
THAT WE'RE LIVING IN.
AND WE SPEND LESS TIME GETTING
TO KNOW EACH AS HUMAN BEINGS AND
PEOPLE AND I THINK THE COMPONENT
IS DIFFICULT TO MEASURE AND HARD
TO WRITE IN A PERFORMANCE
APPRAISAL AND I THINK THAT WE'RE
RELUCTANT TO USE OUR TOOLS JUST
TO MAINTAIN A GOOD RELATIONSHIP
WITHIN OUR WORKFORCE.
SOME PEOPLE WOULD EVEN SAY THAT
IT'S A MISUSE OF GOVERNMENT
RESOURCES.
AND WHILE THIS MAY APPEAR TO BE
LESS EFFICIENT USE OF TIME, I
THINK IT'S PART OF MAKING THE
WORKPLACE A GREAT PLACE TO WORK
AND I'M NOT SURE THAT WE CAN BE
A GREAT PLACE TO WORK WITHOUT
THIS FOCUS ON RELATIONSHIPS SO
THESE ARE THE THINGS WE'VE
TALKED ABOUT AND TAUGHT ABOUT A
LITTLE BIT AND WE HAD A MEETING
OF THE EXECUTIVE TEAM THIS WORK
AND TO TRY TO MAP OUR OUR PLANS
AND TO STOP THE EXTREME PENDULUM
SWING TOWARDS OF WORKING IN THE
VIRTUAL EXPERIENCE AS MUCH AS
POSSIBLE AND BEGIN TO BRING IT
BACK A LITTLE BIT.
YOU HAVE ALL RECEIVED THE
QUARTERLY REPORT FROM DAVID LANG
OFFICE OF PATIENT SAFETY AND
CLINICAL QUALITY AND IF THERE
ARE QUESTIONS ABOUT THAT REPORT,
WE WILL MAKE SURE THAT DAVID
GETS A CHANCE TO ADDRESS THEM.
AND AGAIN, THESE JUST LIKE THESE
DATA ARE PLACED ON OUR CLINICAL
CENTER WEBSITE FOR PUBLIC
VIEWING AND WE'LL BE UP THERE A
WEEK AFTER THIS MEETING.
SO THIS IS THE AGENDA FOR THE
REST OF THE DAY AND WE'VE
ALREADY HAD THE WELCOME BY Dr.
COOTS AND DR. TABAK AND THIS
WILL COMPLETE MY UPDATE.
THIS MEETING FOCUSES ON A
RESEARCH IN THE CLINICAL CENTER
AND THERE'S NOBODY BETTER
QUALIFIED TO TALK ABOUT RESEARCH
IN THE CLINICAL CENTER THAN
Dr. GALLIN, WHO WILL GIVE THE
NEXT PRESENTATION.
AND THEN Dr. GEORGE SANTANGELO
FROM THE OFFICE OF PORTFOLIO
ANALYSIS AT NIH HAS SOME VERY
SOPHISTICATED TOOLS TO LOOK AT
THE PORTFOLIO OF RESEARCH DONE
IN THE CLINICAL CENTER AND ITS
IMPACT AND HE WILL GIVE A
PRESENTATION THEN WE'LL HAVE A
LITTLE BREAK AND WE'LL TALK A
LITTLE BIT MORE ABOUT RESEARCH
INVOLVING PEDIATRIC PATIENTS.
I ALLUDED TO THIS A LITTLE BIT
IN THE LAST BOARD PRESENTATION.
HOPEFULLY WE'LL BE ABLE TO
FINISH UP ON TIME.
SO, NATASHA, OR CARLIE IF YOU
WANT TO TAKE DOWN THE SLIDES NOW
AND IF THERE ARE QUESTIONS TO
ME, I CAN ADDRESS THEM IF NOT
WE'LL MOVE ON TO Dr. GALLIN'S
PRESENTATION.
>>THANK YOU SO VERY MUCH.
ARE THERE ANY QUESTIONS?
OR ANY DISCUSSION.
WE HAVE A FEW MINUTES,
PARTICULARLY AROUND THE THE WORK
FROM HOME OR RETURN TO WORK
DISCUSSION THAT JIM BROAD UP AND
I GUESS I'LL START.
ONE OF THE THINGS WE FOUND IS
THAT WE SAVED MONEY AND SHIFTING
A LOT OF THE ADMIN WORK TO WORK
FROM HOME BUT WE REALIZE THAT
THE WORK WASN'T NECESSARY
SUFFERING BUT IT WAS THE CULTURE
AND IT WAS SUFFERING AND IN
PARTICULAR AS WE ON BOARDED NEW
COLLEAGUES AND WHOSE JOBS WERE
WORK FROM HOME AND THERE WAS NO
WAY TO CULTURE THEM WITHOUT
BRINGING THEM IN SO WE HAVE
CREATED SOME SWING SPACE AND
SHARES SPACES AND LOOKING AT
BEGINNING TO NEW YEAR WE'LL
BRING PEOPLE BACK ONE DAY A WEEK
IF NOT TWO AND INTO SOME OF
THESE HOT BUNKING AREAS AND JUST
TO ENSURE THAT THEY REMAIN A
CULTURE TO WHO WE ARE.
>>THANK YOU, VAN.
DAVID PUT A NOTE IN THE CHAT
ABOUT TOOLS THAT SUPPORT HYBRID
PATIENT ROUNDING AND CLINICAL
VISITS AND ACTUALLY I THINK THAT
WE'RE IN THE PROCESS OF PUTTING
SOME OF THOSE INTO PLAY.
I DON'T THINK THOSE TOOLS DO
ADDRESS THE ISSUES THAT VAN JUST
RAISED.
I DON'T BELIEVE THAT IF YOU --
IF YOU RELY EXTENSIVE LEON
THOSE, AND YOU DON'T HAVE PEOPLE
TOGETHER IN THE WORKPLACE.
I THINK THERE ARE SOME JOBS THAT
CLEARLY CAN BE DONE WITHOUT EVER
COMING TO THE CLINICAL CENTER
THE ONES THAT INVOLVE IN PATIENT
CARE WORKING IN TEAMS AND
WORKING GROUPS AND ESPECIALLY
CLINICAL TEAMS OR A PLACE LIKE
OURS WHERE EVERYBODY IS PRETTY
SPECIALIZED, I REALLY -- I'M NOT
SURE HOW MUCH -- HOW VALUABLE
THOSE TOOLS ARE GOING TO TURNOUT
TO BE.
I'M WAITING TO BE CONVINCED.
>>THEY DON'T REPLACE PERSONAL
PERSONS BUT THEY PROVIDE THE
ABILITY WHERE THERE'S
RESTRICTIONS ON VISITORS OR
DISTANT RELATIVES THE
OPPORTUNITY FOR RELATIVES TO
PARTICIPATE IN --
>>WE'VE DONE THAT THROUGHOUT
THE PANDEMIC IS FACILITATED
VISITS AND USING THOSE VIRTUAL
TOOLS.
>>IF THERE ARE NO QUESTIONS OR
DISCUSSION, JIM, ONCE AGAIN,
THANK YOU FOR THAT GREAT UPDATE
AND I'M SURE THAT PEOPLE WILL
CONTINUE TO RETURN TO WORK
POLICIES THAT WILL BE IN
DEVELOPMENT.
SO, OUR NEXT PRESENTATIONS ARE
GOING TO BE Dr. JANUARY GALLIN
AND Dr. GEORGE SANTANGELO AS
JIM HAD MENTIONED.
THESE PRESENTATIONS ARE ACTUALLY
COMPANION TALKS WHICH ARE
REFLECTING THE HIGHLIGHTS AND
SUCCESSES OF THE CLINICAL CENTER
RESEARCH OVER THE YEARS.
Dr. GOI GALLIN WILL OFFER THE
CLINICAL CENTER RESEARCH PAST
AND PRESENT FROM HISTORICAL
VIEWPOINT AND SCIENTIFIC
CONTRIBUTIONS OVER THE PAST 70
PLUS YEARS.
AND THEN Dr. SANTANGELO WILL
FOLLOW WITH DETAILS OF ANALYSIS
OF PUBLICATIONS AUTHORED BY
CLINICAL CENTER RESEARCHERS SO
Dr. GALLIN, HE'LL TURN IT OVER
TO YOU.
THANK YOU.
>>THANK YOU, VERY MUCH.
I DON'T KNOW IF MY SCREEN
SHARING IS WORKING, IS IT UP?
>>YOUR SLIDE IS UP.
>>OK.
SO I WANT TO THANK YOU, Dr.
COOTS FOR THIS OPPORTUNITY AND
THANK Dr. GILMAN WHO HAS
ALLOWED ME TO SHARE MY PASSION,
MY PASSION FOR OVER 50 YEARS AT
NIH ABOUT THE CLIP CAL CENTER
AND THE RESEARCH THAT'S BEEN
DONE.
WHAT I'D LIKE TO DO TODAY IS
TELL YOU A STORY.
A STORY ABOUT THE PEOPLE WHO
MADE THE RESEARCH POSSIBLE AND
THOSE PEOPLE HAVE TO START WITH
THE PATIENTS.
WHO HAVE COME HERE TO MAKE ALL
THIS POSSIBLE.
WHO I'D LIKE TO SAY THE CLINICAL
CENTER, THERE ARE MANY PATIENTS
WHO REALLY GAVE THEIR LIVES TO
MAKE THE ACCOMPLISHMENTS THAT
WORE GOING TO SHARE WITH YOU.
SO THE STORY OF THE CLINICAL
CENTER STARTS JULY 1st, 1944
AND THE TIME OF WORLD WAR II
WHEN THE CONGRESS AND PRESIDENT
ROOSEVELT, WITH HIS URGING,
PASSED THE PUBLIC-HEALTH SERVICE
ACT AUTHORIZING THE
ESTABLISHMENT OF THE CLINICAL
CENTER AND I LIKE TO THINK THAT
WAS ONE OF THE GREAT GIFTS THAT
THE CONGRESS AND THE ROOSEVELT
ADMINISTRATION HAS GIVEN TO THE
AMERICAN PUBLIC.
THE NEXT CHAPTER JULY 8th,
1947 WHEN CONGRESS APPROPRIATED
MONEY TO BUILD WHAT WAS THEN
GOING TO BE A 600-BED HOSPITAL,
WHICH WE'VE NEVER UTILIZED.
AND THE MONEY WAS $60 MILLION TO
BUILD A $1.4 MILLION SQUARE FOOT
HOSPITAL SO YOU CAN HAVE A
APPRECIATION FOR HOW INFLATION
HAS CHANGED OVER TIME.
SO, THAT ALL RESULTED IN THE
CLINICAL CENTER AND ON MY FIRST
SLIDE, I JUST FLOATED IN, A
PHRASE THAT OUR NURSES HAVE
COINED AND THIS WAS SOME TIME
AGO, THERE'S NO OTHER HOSPITAL
LIKE IT.
I REALLY LIKE THIS PHRASE.
AND I USED IT AS THE BY-LINE FOR
THE CLINICAL CENTER FOR MANY
YEARS.
WHAT MAKES US DIFFERENT?
WHY DO WE HAVE THAT PHRASE?
THE FIRST THING I WOULD ARGUE IS
OUR VISION AND OUR VISION WAS
FIRST GIVEN TO US ON JUNE 2
JUNE 22nd, 1951 BY PRESIDENT
HARRY TRUE MAN WHO LAID THE
CORNER STONE AT THE CLINICAL
CENTER AND IN THAT MEETING,
SAID, MODERN MEDICINE MUST FIND
WAYS OF DETECTING DISEASES IN
THEIR EARLY STAGES AND STOPPING
THEIR DESTRUCTIVE FORCE, THAT IS
THE MAJOR WORK IN THIS CLINICAL
RESEARCH CENTER AND IN OTHER
WORDS, A HOSPITAL TOTALLY
DEDICATED TO CLINICAL RESEARCH.
I THINK THAT VISION IS ONE OF
THE THINGS THAT HAS DRIVEN US
FOR ALL THESE YEARS.
AND I POINT OUT, INTERSECTION
YEAR ITNEXT YEAR WILLBE THE 70t.
WHAT ELSE MAKES US GIVE.
WE'VE NEVER BILLI BILLED A PATIR
ANYTHING.
WE'RE ALLOWED TO SPEND AS MUCH
TIME AS WE NEED FOR THE
PATIENTS.
BOTH FOR THEIR CARE AND FOR
UNDERSTANDING THEIR DISEASE AND
TRYING TO MAKE ADVANCES.
EVERY PATIENT COMES TO THE
PROTOCOLS AND THEY'RE THE ENGINE
THAT DRIVES THE RESEARCH PART OF
THE HOSPITAL.
AND IT'S A HOSPITAL LITERALLY
SURROUNDED BY RESEARCH
LABORATORIES, NOT ONLY IN
BUILDING 10, BUT THE HOSPITAL
BUILDING, BUT IN ALSO THE
SURROUNDING BUILDINGS ON THIS
CAMPUS.
AND ONE OF THE THINGS THAT I
WANT TO SHOW YOU, AS I GO
THROUGH THE DISPLAY OF
ACCOMPLISHMENTS, IS HOW THAT
INTERACTION HAS REALLY HELPED TO
NURTURE THE WONDERFUL
ACCOMPLISHMENTS THAT HAVE BEEN
MADE.
OF IN DEED, THESE LABS ARE
REALLY SPECIAL SO THERE ARE 33
LASKER AWARDS AND 7 NOBEL.
THOSE THAT DIDN'T, INTERFACED IN
THE CLINICAL CENTER IN
INTERESTING WAYS AND SO LET'S
NOW GO TO THE ACCOMPLISHMENTS
AND THE FIRST ONE STARTED IN
1953 WITH THE FIRST MEDICAL
BOARD SHOWN HERE AND AS YOU
HEARD YOU CAN SEE DRAMATICALLY
THE CHANGE PHONE OWE TYPE OF
STAFF, ALL WHITE, CAUCASIAN MAN
BACK IN 1953 BUT, THEY HAD SOME
INSIGHTFUL THOUGHTS AND ONE OF
THEIR THOUGHTS I THINK THEIR
THIRD MEETING WAS TO ISSUE
GUIDING AND MEDICAL REVIEW OF
ALL HUMAN RESEARCH AT THE
CLINICAL CENTER AND A DETAILED
VE RIOUX OF THE CONSENT PROCESS.
THIS POLICY WHICH WAS REALLY A
CORNER STONE FOR HOW WE DO
RESEARCH LATER BECAME THE BASIS
FOR ALL THE NATIONAL
INSTITUTIONAL REVIEW BOARDS WERE
CREATED BY THE SURGEON GENERAL A
DECADE LATER.
SO WHAT ELSE MAKES US DIFFERENT?
OUR SPECIAL RESOURCES THAT
ENABLE OUR STUDIES, SHOWN FIRST
IN THIS LIST IS A BIO MECHANICS
LAB AND YOU SEE A WALKING
SKELETON AND A WALKING PERSON
REDUCED TO THE SKELETON IN THE
FORCES OF THE MUSCLE AND THE
BONES THAT CAN BE STUDIED AND I
WILL GET BACK TO THAT IN MY LAST
COMMENT AT THE END OF THE TALK.
WE HAVE FOUR METABOLIC CHAMBERS
WHICH ARE SPECIAL CHAMBERS TO
STUDY THE PHYSIOLOGY WITH PEOPLE
WITH OBESITY AND WASTING
SYNDROMES.
WE HAVE A CENTER OF CELLULAR
ENGINEERING THAT MANUFACTURES
CAR T CELLS AND OTHER KEY
PRODUCTS FOR SOME OF THE
THERAPEUTIC STRATEGIES THAT ARE
BEING DEVELOPED.
WE HAVE AN MRI CENTER ATTACHED
TO THE HOSPITAL.
THIS CENTER HAS 20MRI MACHINES
AND 10MRI MACHINES IN THE
CLINICAL CENTER ITSELF AND YOU
SAW THERE ARE ONLY ABOUT 80
PATIENTS IN THE HOSPITAL AND
THIS IS A PHENOMENAL RESOURCE.
THERE ARE THREE SEVEN MRI
MACHINES AND ONE 11.7MRI
MACHINES AND FOR THOSE OF YOU
INTO IMAGING, THIS IS A
PHENOMENAL RESOURCE.
OUR PETRIE SEARCH DEPARTMENT HAS
THREE PSYCHE LOWTRONS FOR USE TO
LOOK AT REACCEPTORS IN VARIOUS
DISEASE STATES.
WE HAVE A HIGH CONTAINMENT
CLINICAL STUDY UNIT WHERE WE CAN
SAFELY BRING IN PATIENTS WITH
THE THE EBOLA OR COVID.
WE HAVE A STRONG HEALTHY
VOLUNTEER PROGRAM WHO THESE
FOLKS WHO COME HERE SERVE AS
IMPORTANT CONTROLS IN MANY OF
OUR STUDIES AND WE HAVE A VERY
SPECIAL BIOETHICS DEPARTMENT
WHERE THE BIO ETH SIS GO ON
REGULAR ROUNDS WITH THE
PHYSICIANS AND CARE PROVIDERS
AVAILABLE TO TALK ABOUT AND
RESIDENTS AND SHOW YOU A LONG
LIST OF PEOPLE, INTRODUCE YOU TO
A LONG HISTORY OF PEOPLE WHO
MADE THESE ACCOMPLISHMENTS IN
1958, HE HAD A PATIENT UNDER THE
CARE OF ROY HERTZ WHO HAD CORYO
CARCINOMA AND SHE WAS GOING TO
DIE FROM HER CANCER.
HE DECIDED TO DO SOMETHING NEW
AND USE METHOTREXATE TO TREAT
AND SHE GOT BETTER.
DID HE THIS IN A FEW MORE WOMEN
AND DEVELOPED THE FIRST
TREATMENT FOR HUMAN SOLID TUMOR
THE BEGINNING OF CHEMOTHERAPY
NOR CANCER.
IN 1964, 'EMEL FRY USING CHEMO
THERAPEUTIC APPROACHES CURED
CHILDHOOD ACUTE LYMPHO SIGH TICK
LEUKEMIA AND INVESTIGATORS IN
THE CANCER INSTITUTE REALLY PUT
CHEMOTHERAPY ON THE MAP AND
CONVINCE FOR HODGKINS DISEASE,
JIM HOLLAND, JOHN ZIEGLER AND
GORDON ZUBROD WHO DEVELOPED THE
USE OF A TREATMENT IN CANCER AND
ALL THE PEOPLE YOU SEE ON THIS
SLIDE WON LASKER AWARDS FOR
DEVELOPING CHEMOTHERAPY FOR
CANCER.
MORE RECENTLY, STEVEN ROSENBERG,
I BELIEVE STEVE IS TH THE FATHER
FOR CELLULAR THERAPY FOR CANCER.
THIS IS A FEW MEETINGS AGO WHO
HAS PIONEERS THE GENETIC BASIS
AND MANAGEMENT OF KIDNEY CANCER
AND HELPED TO COME UP WELCOME
BACK SOME NEW TREATMENTS FOR
THESE PATIENTS.
IRA PASSTON AND ROBERT CREEMAN
WAS THE FIRST TO USE AN IMMUNO
TOXIN AND AN ANTI BODY TARGETING
A CANCER CELL TO TREAT LEUKEMIA
AND PATIENTS WHO HAD RELAPSED
AND FAILED TREATMENT AND
DEVELOPED CURES.
IRA WAS A BASIC SCIENTIST WHOSE
MIGRATED INTO CLINICAL RESEARCH.
HE HAS TRAINED TWO NOBEL
LAUREATES.
SO IT JUST SHOWS HOW THE
INTERFACE OF THESE BASIC SIGNS
LABS WITH CLINICAL MEDICINE IS
REAL.
THIS IS NOT JUST IMAGINE.
PETER PINTA, BRAD WOOD AND PETER
CHOIKI WERE THE FIRST TO USE MRI
ULTRASOUND FUSION GUIDED
PROSTATE BIOPSIES AND THIS
APPROACH HAS NOW BEEN BROUGHT TO
ROUTINE HEALTHCARE PRIVATE
PRACTICE AND HAS CHANGED THE
MANAGEMENT AND TREATMENT OF AN R
AND A NEW TREATMENT FOR
REFACTORY LIMB DOM LYMPHOMA USIT
CELLS APPROVED BY THE FDA.
LET'S GO TO TRANSFUSION
MEDICINE.
THE COULTER COUNTER WAS
INVISITED BY WALLACE COULTER AND
GEORGE BREACHER IN 1956.
THIS MACHINE, IF YOU DO KNOW IT,
COUNTS AUTOMATICALLY THE CELLS
IN THE BLOOD AND IS USED IN
VIRTUALLY HE SHOWS THIS PLASMA
WAS RICH IN PLATELETS AND FOR
MANY YEARS THIS WAS THE SOURCE
OF PLAY RATES FOR PATIENTS WHO
NEEDED THEM AND 1965, GEORGE
JOHNSON WHO WAS VISITING FROM
IBM AND PARTNERSHIP WITH EMO
FREEWAYRIGHT INVENTED THE FLOW
BLOOD SEPARATOR FOR SEPARATING
OUT ALL THE COMPONENTS OF THE
BLOOD AND I WANT TO JUST SPEND
ONE MOMENT TALKING ABOUT HARVEY
ALTER.
HARVEY IN 1964 WAS A FIRST-YEAR
FELLOW, 1963 WAS A FIRST YEAR
FELLOW AT THE CLINICAL CENTER IN
THE BLOOD BANK LEARNING HOW TO
OVERSEE ON HEPATITIS B FOR WHICH
HE WON THE NOBEL PRIZE AND
HARVEY WAS THE SECOND AUTHOR ARE
ON THE PAPER AND HE DIDN'T WIN
THE NOBEL PRIZE.
IT DIDN'T STOP HIM AND HE BECAME
PASSIONATE ABOUT HEPATITIS AND
YOU'VE HEARD HIM PRESENT AND A
1970 UNDER HARVEY LEADERSHIP THE
BLOOD BANK SWITCHED FROM AN
ALL-VOLUNTEER DONOR PROGRAM
REDUCING BLOOD TRANSFUSION
HEPATITIS FROM 30% TO 11% AND
NOW THIS IS BECOME A NATIONAL
PROCESS.
AND IN 1989, HE CO DISCOVERED
WITH MICHAEL AND CHARLES RICE
HELP SIGHT US C VIRUS AND FOR
WHICH IN 2020, HARVEY WON THE
NOBEL PRIZE ON HEPATITIS SHOWING
AGAIN THE INTERFACE BETWEEN THE
WONDERFUL LABORATORIES
SURROUNDING NIH AND THE
CLINICIAN INVESTIGATORS.
NOW THAT MOVED FROM TRANSFUSION
MEDICINE TO HEMATOLOGY AND I'LL
JUST POINT OUT IN 1995, NEIL
YOUNG DEVELOPED A TREATMENT WITH
NOW COME THE STANDARD OF CARE
AND SAME YEAR THE DIRECTOR OF
NIDDK SHOWED THAT HYDROXY REAR
CAN MAKE A BIG IMPACT ON
PATIENTS WITH SICKLE CELL A
NAMIA BUT NOT A CURE AND IN 2019
TO THE PRESENT, JOHN TISDALE
FIRST INITIATED AND PARTNERING
MORE RECENTLY WITH COURTNEY
FITZU THEY CURED PATIENT WITH
SICKLE CELL ANEMIA WITH BONE
MARROW TRANSPLANT AND GENE
THERAPY AND THEY'RE NOW WORKING
TO SEE IF THERE'S ANYWAY THAT
THEY CAN MAKE THIS A PRACTICAL
INEXPENSIVE TREATMENT FOR
PATIENTS IN THE DEVELOPING WORLD
SUCH AS AFRICA WHERE THERE'S A
HIGH INCIDENTS OF SICKLE CELL
ANEMIA.
IN 1957, GENE THEY SAID IT STENO
SIS AND GLEN MORROW DEVELOPED
SURGICAL PROCEDURES TO BRING
RELIEF TO PATIENTS WHO HAD THIS
PROBLEM.
THREE YEARS LATER, HIS WIFE A
CARDIAC SURGERY DID THE FIRST
SUCCESSFUL VALUE REPLACEMENT AT
THE CLINICAL CENTER WITH GLEN
MOROWE.
IN 1961, HE BEGAN HIS WORK WITH
BOB LEAF' DESCRIBING A NEW
DISEASE NAMED FOR PATIENTS FROM
TANG AREA ISLAND WHO HAD A
PROBLEM OF HEART ATTACKS EARLY
IN LIFE.
TEENAGERS IN THEIR 20s.
UNDERSTANDING THE ROLE OF LIPIDS
ADDS RISK FACTORS FOR CORONARY
HEART DISEASE THAT THEY
DESCRIBED.
THAT'S OBVIOUSLY A PHENOMENAL
ACCOMPLISHMENT.
AT THAT TIME, TWO INVESTIGATORS
AT NIH BUT NOT IN THEIR LAB,
MICHAEL BROWN AND JOE GOLDSTEIN,
WORKING WITH CHRIS SAMPSON AND
OTHER LABS GOT INTERESTING IN
THESE PATIENTS AND WERE
FASCINATED BY A TEENAGE GIRL WHO
DIED OF A HEART ATTACK AND THIS
LED THEM TO THEIR LIFELONG STORY
OF CHOLESTEROL METABOLISM WHICH
THEY LATER WON THE NOBEL PRIZE.
AND IN 2002, PHILLIP GORDON
DESCRIBED THE USE OF LEPTIN TO
TREAT PATIENTS.
ONE OF THE GREAT ACCOMPLISHMENTS
OF THE NATIONAL INSTITUTES OF
VIROLOGY AND INFECTIOUS DISEASES
IS DEVELOPING OF VACCINES, ALONG
WITH OTHER INSTITUTES IN 1987 IN
THE CHILD HEALTH INSTITUTE, IN
1972 TO 1994, STEVE FINESTEEN
AND BOB DEVELOPED THROW CRITICAL
VACCINES.
FIRST ISOLATED HEPATITIS A VIRUS
AND DEVELOPED A VACCINE TO IT
AND THEN THEY DEVELOPED THE
VACCINE TO HEPATITIS B AND
WORKING WITH THE LEAD THEY
DEVELOPED A FIRST VACCINE
AGAINST ROTO VIRUS MOST COMMON
CAUSE OF INFANT DIARREAH
WORLDWIDE.
2005, WORKING ON OUR CAMPUS,
DOUG AND JOHN DEVELOPED THE
TECHNOLOGY FOR THE HPV VACCINE
WHICH HAS BEEN CRITICAL IN
PROTECTING GIRLS FROM CERVICAL
CANCER IN MEN FROM PENILLE
CANCER.
THE FIRST EBOLA VACCINE WAS
DEVELOPED IN PARTNERSHIP WITH
BARNEY GRAHAM WHO BROUGHT IT TO
THE FIRST IN HUMAN USE AT THE
CLINICAL CENTER AND IN 2020,
ALSO AT THE VACCINE RESEARCH
CENTER, IT'S BARNEY GRAHAM AT A
CRITICAL ROLE IN DEVELOPING A
TECHNOLOGY FOR THE COVID-19
VACCINE.
AND THE FIRST PATIENTS OR PEOPLE
TO RECEIVE IT WERE AT THE
CLINICAL CENTER AND LED BY
BARNEY GRAHAM.
I CAN'T HELP BUT COMMENT ABOUT
AIDS.
AND SALUTE TOON TONY FAUCI AND F
LANE IN THEIR WORK FINDING THE
IMMUNO IN HIV AND THEY PLAYED A
ROLE IN THAT.
BOB GALLO WORKING IN THE NCI
DEVELOPED A SCREENING TEST WHICH
WAS USED TO ERADICATE HIV FROM
THE BLOOD SUPPLY.
THE FIRST THROW TREATMENTS FOR
AIDS WERE DEVELOPED AT CLINICAL
CENTER AND SAM BRODE USED AZT AS
THE FIRST TREATMENT OF AIDS AND
THEN TWO OR THREE DDC AND 2, 3,
DDI WERE DEVELOPED AT CLINICAL
CENTER.
WE BECAME INTERESTED IN THE
OPPORTUNISTIC INFECTIONS
EFFECTING AIDS PATIENTS AND
GENTLEMEN KOVAJOEKOVACS DID THEG
OF DEVELOPED RAPID DIAGNOSTIC
TESTS TO DETECT PATIENTS WHO HAD
THAT INFECTION.
AND HENRY MIZOUR WHO LEADS OUR
CRITICAL CARE DEPARTMENT WROTE
THE NATIONAL GUIDELINES FOR HIV
AND WRITTEN GUIDELINES FOR EBOLA
AND COVID LATER.
SOME OF THE OTHER INFECTIONS,
STEVE STRAUSS, WHO DIED AT A
EARL AGE, SADLY, DID THE FIRST
CLINICAL TRIAL OF TO TREAT AGAIN
TILL AND ORAL HERPES AND ONE OF
OUR CURRENT TENURE TRACK
INVESTIGATORS SAMIR KADRI, WHO
IS A COMPUTATIONAL
EPIDEMIOLOGIST, WORKING IN
CRITICAL CARE MEDICINE, DID A
SURVIVAL ANALYSIS OF COVID
PATIENTS IN 558 U.S. HOSPITALS
AND AMONG THE THINGS HE SHOWED
IS THAT INTER HOSPITAL TRANSFER
OF COVID PATIENTS, CAN BE SAFE.
AND MOST RECENTLY, DAN HAS A
PAPER THAT COMES OUT IN THE NEXT
WEEK IN NATURE AND AN ALLIESING
PERSISTENCE OR ANALYZING AUTOPSY
OF PATIENTS WITH COVID IN
SHOWING PERSISTENT VIRAL
INFECTIONS AND INCLUDING AS LONG
AS 230 DAYS POST HAVE I RAL
SYMPTOMS DETECTING VIRUS IN THE
BRAIN AND I THINK THIS MAY HAVE
HUGE IMPLICATIONS FOR OUR
LONG-HAULERS.
HOPEFULLY THEY'RE NOT INFECTED
BUT IT'S SOMETHING TO WORRY
ABOUT.
I WANT TO SALUTE LAUREN LEONARD
AND JOHN O'SHEA.
FOR THE INFLAMMATORY PROCESS IN
COVID-19.
THESE DRUGS HAVE NOW BEEN
LICENSED AND APPROVED AND ARE
BEING DISPENSED BY SEVERAL
COMPANIES AND HAVE COMPLETELY
TRANSFORMED THE TREATMENT OF
RHUMATOID ARTHRITIS AMONG OTHERS
AND IT'S A VERY, I THINK,
IMPORTANT CONTRIBUTIONS THAT
THEY'VE MADE.
BOB WORKING IN THE EYE INSTITUTE
AND COLLEAGUES DEVELOPED
SUSTAINED RELEASE IN IMPLANTS
FOR CYTOMEGLA OWEVIRUS RENNITIS
AND THEY CAN BE USED TO UNDER
HOSPITAL INFECTION OUTBREAKS AND
THIS IS REALLY I THINK
REVOLUTIONIZED THE APPROACH TO
HOSPITAL EPIDEMIOLOGY OF
INFECTIOUS DISEASES.
LET ME NOW SHIFT TO MENTAL
ILLNESS AND TELL YOU A FEW
THINGS.
FRED GOODWIN DID THE FIRST
CLINICAL TRIALS OF LITHIUM FOR
DEPRESSION AND LOUIS INVENTED
PET SCANNING AND THE PRINCIPLE
MOST USEFUL PROBE WHICH IS STILL
USED IN THOSE SCANS AND JUDY
RAPPAPORT DESCRIBED COMPULSIVE
ORDER IN CHILDREN AND DEVELOPED
THE FIRST TREATMENT.
AND SHE ALSO DEMONSTRATED THAT
IT COULD BE USED TO TREAT
CHILDHOOD SCHIZOPHRENIA AND
BRING THEM SUBSTANTIAL RELIEF
AND SUSAN DESCRIBED THIS DISEASE
CALLED PEDIATRIC AUTOIMMUNE WITH
STEP INFECTIONS OR PANDAS ARE
VERY SUBSTANTIAL CONTRIBUTIONS.
AND MAYBE THE BIGGEST
CONTRIBUTION IS THE USE OF
KETAMINE, WHICH IS ANNAN THES I
CAN TO TREAT DEPRESSION AND
SUICIDAL IDEATION AND YOU CAN
GIVE IT TO PATIENTS IN AN
EMERGENCY ROOM AND WITHIN HOURS,
YOU GET DRAMATIC RELIEF.
THIS IS AN EXCITING OBSERVATION
AND RECENTLY, CARLOS WHO LED
THESE STUDIES HAS BEEN USING
ESKETAMINE WHICH DOESN'T HAVE
ATTIC TIVE PROBLEMS FOR
DEPRESSION.
PETER SUBMIT AND DAVID HAD
TREATMENT WITH ELLEN DESCRIBED
THE DISEASE CALLED DISRUPTIVE
MOOD DISREGULATION DISORDER IN
CHILDREN AND THIS DIFFER IT'S A
IRRITABILITY IN CHILDREN FROM
PEDIATRIC BIPOLAR DISORDER WHICH
IS PHENOM INLY IMPORTANT FOR
THOSE CHILDREN.
AND LASTLY, MARRA LYNN DEVELOPED
A SUICIDE RISK TOOLKIT USED AT
THE CLINICAL CENTER AND NOW MORE
BROADLY THROUGHOUT THE COUNTRY.
AND A FEW COMMENTS ABOUT
ENDOCRINE DISEASES THEY WERE
DESCRIBED BY JESSE ROTH AND
THOSE WERE INSULIN RECEPTORS AND
HE ALSO TRAINED A NOBEL
LAUREATE.
1985 CUSHION SYNDROME TREATMENT
WITH GLUCOSE AND RU486 AND IN
2017 DANNY PORTER DESCRIBED
TREATMENT OF A RARE DISEASE WITH
HYDROXY SIGH CR CLO AND THE SAME
YEAR THEY LASTLY, DEBBIE MERKC
THE FIRST CHIEF OF THE
PEDIATRICS DEPARTMENT IN THE
CLINICAL CENTER HAS DESCRIBED
HOW TO MANAGE AND TREATMENT IN
CHILDREN.
LAST SLIDE, ON THESE TOPICS, IS
TO JUST SHOW YOU SOMETHING ABOUT
DEVOICES.
FIRST, THE 1963, A INVENTED THE
CNS RESERVOIR YOU PUT IN THE
BRAIN TO DELIVER DRUGS AND
SAMPLE SPINAL FLUID OVER A LONG
PERIOD OF TIME.
JOHN DOTMAN THE FORMER CHIEF OF
RAID ALGO DEVELOPED A METHOD TO
LOCATE PARA THYROID GLANDS.
LAST WEEK TRANSLATIONAL MEDICINE
DESCRIBING A NEW LOW COST, 3D
PRINTED MENTURE VENTILATOR THAT
HAS NO MOVING PARTS, NO
ELECTRICITY, AND HE DEMONSTRATED
ITS UTILITY IN PIGS AND NOW IT'S
BEING REVIEWED BY THE FDA FOR
CLINICAL TRIALS AND THIS IS A
DEVICE THAT CAN BE USED IN THE
AMBULANCES IF IT WORKS, IT CAN
BE USED IN THE BATTLE FIELDS,
AND IT CAN SHALL USED IN
DEVELOPING COUNTRIES.
AND LASTLY, I'LL GET BACK TO THE
MECHANICS I MENTIONED EARLIER,
THOMAS BUELL YEAR AND DIANNE IS
A TESTIFIED WORKING IN REHAB
MEDICINE AND TOM IS A TENURE
TRACK INVESTIGATOR WHO IS A
ROBOTIC ENGINEER AND THEY WERE
IMPRESSED WITH CHILDREN WITH
CEREBRAL PALSY WHO COULDN'T WALK
WELL AND DEVELOPED EXTERNAL
ROBOTIC DEVICES THAT HAVE
CHANGED THE LIFE OF THESE
CHILDREN AND ENABLED THEM TO BE
INTEGRATED INTO SOCIETY.
SO IN SUMMARY, WHAT I'VE TRIED
TO SHOW YOU, IS THAT WE FOCUS ON
THROW MAJOR AREAS OF CLINICAL
CENTER.
AND IF WE SEE SOMETHING
PROMISING, WE WILL OFTEN GIVE IT
TO INDUSTRY OR SHARE IT WITH OUR
COLLEAGUES AT UNIVERSITIES AND
THEN WE SPEND A LOT OF TIME
STUDYING RARE DISEASE AND IN
DEED, HALF OUR PROTOCOLS ARE
ABOUT RARE DISEASES AND YOU
MIGHT SAY WHY, FIRST OF ALL
THEY'RE NOT SO RARE.
30 MILLION AMERICANS HAVE A RARE
DISEASE AND WE GIVE THEM HOPE
AND MORE IMPORTANTLY, I LIKE TO
REFLECT ON THE FACT THAT THESE
PATIENTS OFTEN PROVIDE A WINDOW
INTO UNDERSTANDING COMMON
DISEASES.
AND I DO HAVE TIME TO GO INTO
THAT IT TODAY, THAT WOULD BE
TALK BUT IT'S A VERY EXCITING
SPIN OUT OF THE STUDIES THAT WE
DO.
SO WHAT ARE SOME OF OUR FUTURE
CHALLENGES?
FIRST, I PUT IS THE RECRUITMENT
AND RETENTION OF OUR VERY BEST
CLINICAL INVESTIGATORS.
AND OF COURSE, AS YOU HEARD FROM
LARRY TABAK, THAT INCLUDES
MAKING SURE THAT WE ADDRESS
DIVERSITY, EQUITY INCLUSION AND
ACCOMMODATION AND IN AN
OBSERVATION, I JUST SHOWED YOU
80 INVESTIGATORS.
ONLY 11 OF THEM WERE WOMEN, AND
ONLY FIVE WERE FROM UNDER
REPRESENTED MINORITIES AND THREE
WERE AFRICAN AMERICAN.
THAT'S THE PAST.
THAT IS WHAT WE HAVE TO FIX.
AND THAT IS WHAT WE ARE ALL
TALKING ABOUT ACTUALLY I WAS
IMPRESSED THAT THE NATIONAL
ACADEMY OF MEDICINE TALKED THIS
WEEK AND THIS WAS A MAJOR AREA
OF EMPHASIS AS WELL.
BUDGET AND PHYSICAL PLAN ARE A
HUGE ISSUE AS WELL.
SO, I'M GOING TO END WITH THIS
LAST SLIDE WHICH IS A COUPLE OF
QUESTIONS THAT I THINK NIH IS
CONSIDERING.
AND YOU MIGHT WANT T CONSIDER.
WITH COVID BECAUSE OF THE ISSUES
THAT ARE EXTENSIVE, WE DIDN'T
BRING IN MANY COVID PATIENTS
MANY OF INSTEAD, WE RECEIVED
SPECIMENS FROM AROUND THE REGION
AND FROM AROUND THE COUNTRY AND
FROM AROUND THE WORLD.
BUT SHOULD WE CHANGE THAT GOING
FORWARD?
SHOULD WE BE ABLE TO HAVE A VERY
ROBUST PROGRAM FOR HANDLING
PATIENTS WITH THESE SERIOUS
INFECTIONS.
AND PREPARE FOG T FOR THE NEXT
PANDEMIC AND LASTLY, SHOULD
THERE BE MORE INVESTMENT IN
SOCIAL ISSUES FACING HEALTH,
SUCH AS HEALTH BEHAVIOR AND
RESEARCH.
WE CREATED A LAB RUN BY THE
FORMER CHIEF NURSE GWEN WALLEN
ADDRESSING THESE ISSUES AND I
TEND TO THINK THAT WE SHOULD PUT
MORE EMPHASIS ON THIS AS PART OF
THE NIH INTRAMURAL PORTFOLIO
GOING FORWARD.
SO THOSE WERE MY COMMENTS AND I
TOLD YOU A STORY AND IT'S
BIASED, IT'S MY PERSONAL
SELECTIONS, AND YOU KNOW, WE'RE
VERY LUCKY THAT AT NIH WE HAVE
GEORGE SANTANGELO HERE WHO IS
THE DIRECTOR OF THE OFFICE OF
PORTFOLIO ANALYSIS AND WHO IS
REALLY DEVELOPED WITH HIS TEAM A
WAY TO OBJECTIVELY EVALUATE THE
IMPACT OF PUBLIC PATIENTS.
AND THE NEXT TALK IS TO ADDRESS
IN AN OBJECTIVE WAY, THE IMPACT
OF PUBLICATIONS BIT 17
INSTITUTES AND CENTERS THAT USE
THE CLINICAL CENTER AS WELL AS
THE INVESTIGATORS WHO WORK FOR
THE CLINICAL CENTER AND EITHER
WE CAN GO AND HAVE SOME
QUESTIONS IF THERE ARE ANY FOR
ME NOW OR MOVE DIRECT LOW TO
GEORGE AND THEN HAVE QUESTIONS
LATER AND I LEAVE THAT UP TO
Dr. COOT COOTS.
>>I WILL JUST SAY THIS WAS
FABULOUS AND JUST TREMENDOUS.
I WOULD THINK FIVE MINUTES FOR
QUESTIONS OR DISCUSSIONS ANYONE
MIGHT HAVE?
>>Dr. GALLIN, THIS IS STEPH,
WHAT YOU JUST SHARED WITH US IS
JUST SO IMPRESSIVE, SO IMPORTANT
AND THE WORLD PROBABLY ISN'T AS
AWARE OF EVERYTHING THAT YOU
JUST SHARED AS WE ALL SHOULD BE.
IT REALLY IS INCREDIBLE IN THIS
COUNTRY BUT AROUND THE WORLD AND
RECOGNITION SHOULD BE COMING TO
THE NIH AND TO AND YOU TO THE
AMAZING TEAM SO THANK YOU FOR
THAT.
I THINK IT'S PROBABLY A BIZARRE
OFF THE WALL KIND OF A QUESTION
BUT IT'S RELEVANT FOR ME AT THE
MOMENT.
MY NEXT DOOR NEIGHBOR COMES TO
ME AND SAYS I HAVE A TERRIBLE
DIAGNOSIS AND IT'S PANCREATIC
CANCER IT'S METASTATIC AND SHE
SAID I WENT TO COP INNS IT'S NOT
VERY HOPEFUL.
WHAT DO WE AS A HEALTHCARE
DELIVERY SYSTEM, DOES THE NIH AS
A RESEARCH AN AMAZING, AMAZING,
RESEARCH ENGINE WHAT DO WE DO
FOR THAT PATIENT WHO GOES FOR A
FEW DOCTOR APPOINTMENTS AND
COMES HOME AND STARTS TO FREE PO
DIE.
ARE THERE THINGS WE SHOULD BE
DOING DIFFERENTLY TO GIVE HOPE?
>>I'M GLAD YOU ASKED THAT
QUESTION, IT'S SOMETHING I'VE
BEEN ENGAGED WITH PERSONALLY.
WE HAVE CLINICAL TRIALS.GOV THAT
LISTS EVERY CLINICAL TRIAL IN
THE COUNTRY AND YOU CAN GO IN
THERE AS A PATIENT AND FAMILY
MEMBER AND GO BY REGION ACTUALLY
AND PUT DOWN A REGION TO FIND
OUT NEAR YOU WHERE YOU LIVE AND
WHAT STUDIES ARE IF YOU GO TO
THE PAGE AND HIT ON OUR STUDIES
BACK IN THE BANNER AT THE TOP,
YOU CAN JUST ENTER A DIAGNOSIS
AND SYMPTOM AND WE'LL COME UP
THE PROTOCOLS THAT A PATIENT
MIGHT BE ELIGIBLE SO TAKE THE
EXAMPLE OF YOUR NEIGHBOR, WHO IS
PANCREATIC CANCER, YOU MAY NOT
KNOW THAT STEVE ROSENBERG, WHO I
SHOWED YOU, HIS PICTURE, HE IS
NOW STUDYING SOLID TUMOR
INCLUDING PANCREATIC CANCER AND
THE FOR THE SPECIFIC MUTATIONS
THAT PATIENTS HAVE SO NOT AT ALL
PAN CROW ATTIC CANCERS ARE THE
SAME, THEY'RE DIFFERENT
MUTATIONS AND IT REALLY GIVES
HOME IT'S ANOTHER WAY THAT YOUR
NEIGHBOR MIGHT FIND USEFUL.
THE PATIENT MIGHT HAVE TO ALIGN
WITH THE PROTOCOL BUT THAT IS
INFORMATION EXCHANGE AND IT'S
CRITICAL AND I DON'T THINK THEY
KNOW WHAT IS AVAILABLE IN TERMS
OF ACQUIRING KNOWLEDGE WHERE
THEY MIGHT GO TO GET HOPE.
I GET THAT ALL THE TIME BECAUSE
YOU KNOW, IT'S A VALUABLE TOOL
THAT NEEDS TO BE SUB LA SIGHED
AND CONSTANTLY DEVELOPING.
>>THANK YOU, THANK YOU FOR THAT
RESPONSE IT MEANS A LOT TO ME.
>>IN ADDITION TO THE THEY HAVE
A STAFF THAT HAS A TOLL-FREE
NUMBER AND FIND PROTOCOLS IF
THEY'RE' COMPUTER I WILL ITS RAT
OR HAVE ACCESSIBILITY ISSUES.
>>DO YOU HAVE A QUESTION OR
COMMENT?
>>YES.
I AM REALLY IMPRESSED WITH YOUR
PRESENTATION AND I'M GOING FROM
THE DMD AREA TO WESTERN IN THE
APPALACHIA AREA AND JUST FIVE
YEARS AGO AND IN BOTH LOCATIONS,
I'VE ALWAYS RAN INTO PEOPLE WH
WHO -- THIS PRESENTATION YOU
JUST GAVE IF THERE'S A WAY THAT
TO PUT THIS IN SOME SORT OF
VIDEO.
JUST COUNT ALL OF THIS AND SOME
PEOPLE THEY NEED MORE, THEY'RE
MORE VISUAL THAN JUST TELLING
THEM.
BECAUSE I FEW OF ALL THOSE
STRIDES THAT NIH HAS DONE FOR
OUR SOCIETY BUT NOT TO THIS
EXTENT.
IF WE CAN PUT IT VIDEO FORMAT
AND PUT IT ON PVS SORRY
SOMEOR SOMETHINGLIKE THAT AS A H
I'VE BEEN BLESSED WITH WHAT'S
BEEN DONE FOR ME THERE BUT FOR
ME TO TELL THEY HAVE A HUGE
DISTRUST OF ANYTHING MEDICAL.
THEY HAVE TO BE HALF PAST DEAD
BEFORE THIS WILL GO TO THE
HOSPITAL.
THANK YOU FOR SHARING ALL THIS
INFORMATION AND GATHERING ALL OF
THIS.
IN ORDER INFORM NIH TO REALLY
REACH OUT TO MORE PEOPLE THAT
ARE VERY RELUCTANT JUST ON THIS
PERIOD IT NEEDS TO BE PUT MORE
LIKE IN A VISUAL FORMAT LIKE
WHAT YOU JUST DID.
THANK YOU.
>>THANK YOU SO MUCH.
AND YOU KNOW, THERE WAS A TV
SHOW SEVERAL, A TWO-PART SERIES
FIRST IN HUMAN ABOUT THE
CLINICAL CENTER AND IT'S
DIFFERENT.
IT WAS A DIFFERENT KIND OF SHOW
BUT IT IS TRYING TO BRING TO THE
PUBLIC WHAT YOU ARE SAYING AND
IT'S SOMETHING THIS WE JUST NEED
TO DO MORE OF.
SO MANY PEOPLE DO KNOW THERE'S A
HOSPITAL AT NIH.
WE NEED TO COMMUNICATE BETTER.
>>THANK YOU FOR THAT DISCUSSION
AND THANK YOU VERY MUCH AGAIN
Dr. GALLIN FOR THAT
PRESENTATION.
IT DOES SPEAK TO THE POWER OF
MARKETING AND THE NEED FOR
MARKETING AND THERE WAS A LINE
FROM A MOVIE YEARS AGO THAT SAID
EVERY SUPERHERO NEEDS A THEME
SONG SO THERE ARE A LOT OF SUPER
HEROES AT NIH.
WE REALLY NEED TO DO SOME
MARKETING AROUND THE GREAT WORK
THAT HAS GONE ON AND WILL
CONTINUE TO GO ON IN THE FUTURE.
SO, THANK YOU, FOR THIS.
I'D LIKE TO GO AHEAD NOW AND
TRANSITION TO Dr. SANTANGELO.
THANK YOU.
>>CAN SOMEONE ON THE TEAM GET
ME OUT OF THIS SYSTEM.
I SEEM TO HAVE LOST MY SHARE.
>>SOME THINGS NEVER CHANGE,
RIGHT.
>>RIGHT.
>>YES.
>>YOUR SLIDES ARE UP.
>>THANK YOU.
>>THANK YOU FOR IN INVITING ME
TO THIS TALK.
IT'S A PRIVILEGE TO HAVE A
CHANCE TO DO THIS ANALYSIS WORK
WITH JOHN GALLIN AND OTHER
COLLEAGUES IN THE DEPUTY
DIRECTOR OF INTRAMURAL
RESEARCH'S OFFICE AND WITH
SCIENTIFIC DIRECTORS AT THE NIH
INSTITUTE AND CENTERS TO TAKE A
LOOK AT NEW METHODS THAT WE'VE
DEVELOPED ARTIFICIAL
INTELLIGENCE AND THAT ALLOWS TO
TAKE A LOOK AT SCALE AT THE
RECENT OUT PUTS OF THE CLINICAL
CENTER RESEARCHERS, AND IT SAYS
HERE, 2017 TO 2020.
ACTUALLY I WANTED TO -- GIVE ME
ONE SECOND.
I WANTED TO ADD TO THE CHAT OUR
WEBSITE SO, IF YOU WOULD LIKE TO
GO AND LOOK AT OUR STRATEGIC
PLAN AND TAKE A LOOK AT OTHER
ASPECTS OF WHAT WE DO AS A TEAM
OUR FOCUS IS ON IMPROVING DATA
DRIVEN DECISION-MAKING AND IN
THAT CONTEXT, IT'S REALLY
IMPORTANT TO BE ABLE TO LOOK AT
SCALE AND FOR ONE THING THE
BUSINESS SCHOOL YOU ADDED YOU
CAN'T MANAGE WHAT YOU CAN'T
MEASURE AND IT'S IMPORTANT AND
POINTS TO THE IMPORTANCE OF DATA
DRIVEN APPROACHES AND
UNDERSTANDING WHAT THE DATA ARE
TELLING YOU SOMETIMES FOLKS HAVE
WORRIED AND EXPRESSED THAT WORRY
TO ME THAT COMPUTATIONAL
APPROACHES LIKE THE ONES WE'RE
DEVELOPING AND REPLACING HUMAN
DECISION MAKERS AND MY RESPONSE
TO THAT IS THAT'S ACTUALLY NOT
CORRECT, EVERYTHING THAT WE DO
IS A FLAG FOR INSPECTION AND IT
IS TRUE WE THINK THAT WE USE
DATA AT SCALE AND THESE
SOPHISTICATED TO UNDERSTAND
PORTFOLIOS AND IT WILL REPLACE
FOLKS FOR MAKERS THAT DON'T UT
THOSE METHODS AND SO WITH THAT
IN TERMS OF, HERE ARE A COUPLE
OF IMAGES AND ILLUSTRATING THE
RESEARCH AT THE CLINICAL CENTER
AND JOHN, HAS ALREADY DONE THE
JOB OF GIVING YOU THE HISTORY
AND SOME OF THE CURRENT SUCCESS
STORIES AND WORK THAT'S GOING ON
AND SO IN TERMS OF THE OVERVIEW,
THIS IS ONE THING THAT WE CAN
PROVIDE IS A COMPREHENSIVE OVER
VOW OFVIEWOF THE PORTFOLIO.
SO THERE WERE 920 PUBLICATIONS
BETWEEN 2017 AND 2020.
33%, WE HAVE CLINICAL IMPACT,
THE PUBLICATIONS WERE FOCUSED
THEMSELVES OR IF THE PUBLICATION
WAS CITED BY ONE OR MORE OR A
CLINICAL TRIAL TA REPORTED
TRIALS SO ALL OF THOSE TOGETHER
ARE A HIGH-QUALITY
REPRESENTATION OF THE CLINICAL
IMPACT OF THE PUBLICATIONS AND
OF COURSE, THAT CHANGES OVER
TIME GOING FORWARD AND AS
ADDITIONAL PAPERS ARE PUBLISHED
THAT CITE THE ONE OR MORE OF
THOSE 131 PUBLICATIONS.
4% HAD TECHNOLOGICAL IMPACT
WHICH IS THE PUBLICATION BEING
CITED BY A PATENT AND 2% HAD
BOTH CLINICAL AND TECHNOLOGICAL
IMPACT AND THAT'S VERY IMPORTANT
BECAUSE IT'S MOST INDICATIVE AND
VERY COMMON AMONGST PAPERS THAT
LEAD TO DRUG APPROVAL OR DEVICE
APPROVAL BY THE FDA.
WE HAVE COMPUTATIONAL APPROACHES
THAT DEFINE WHAT CONSTITUTE A
DISTINCT TOPIC IN AN UNBIASED
FASHION SO IT'S AGNOSTIC,
QUANTITIVELY MATHEMATICALLY
DETERMINANT CHARACTERIZATION OF
THE DIFFERENT TOPICS.
DETERMINING THE AGE AND RATE OF
PROGRESS FOR EACH OF THOSE
TOPICS AND IN THE LITERATURE AND
IDENTIFIED EMERGING AREAS IS
VERY IMPORTANT AND THIS IS IN
GREAT DEMAND ACROSS NIH AND
WE'VE WORKED WITH NUMEROUS
INSTITUTES AND CENTERS AT NIH TO
LOOK AT THEIR PORTFOLIO AND
IDENTIFY EMERGING AREAS.
AGAIN, DOING THIS AT SCALE IS
VERY DIFFICULT FOR AN INDIVIDUAL
TO GRASP THE FULL SCOPE OF AREAS
THAT MIGHT BE EMERGING IN EVEN
IN RELATIVELY SMALL PORTFOLIO,
LET ALONE THE COST OF THE ENTIRE
BIOMEDICAL LANDSCAPE.
AND FINALLY, PRO DICTIONARY
PREDICT IN THECOMING YEARS WE HO
DETECT SIGNALS AND WE HAVE A
PATENT APPLICATION PENDING
DESCRIBING THAT METHODOLOGY.
SO, IN TERMS O QUESTION OF THE E
WERE ASKED TO LOOK AT AND WE'RE
HAPPY TO TAKE ON IN IN ANNAN IS
THE SIS AT SCALE, WHICH ARE
PUBLICATIONS IN THE AUTHOR BY
GOOGLE RESEARCHERS AND HOW
PRODUCTIVE WERE THOSE TOPIC
AREAS AND HOW EXTENSIVE IS
COLLABORATION, JOHN TALKED ABOUT
NEW SUCCESS STORIES WHERE THERE
WAS COLLABORATION AND SO IN
TERMS OF THIS CURRENT SNAPSHOT
OF OUT PUTS OF THE CLINICAL
CENTER RESEARCH, HOW EX
CONTINUES I HEXTENSIVEIS THE REH
INVESTIGATORS OUTSIDE OF
CLINICAL CENTER AND SO BEYOND
THAT, HOW EXTENSIVE IS THE
COLLABORATION BETWEEN CLINICAL
RESEARCHERS AND EXTERNAL
RESEARCHERS, NON NIH RESEARCHERS
AND THEN WHEN WE CHARACTERIZE
THAT WE CAN HAVE QUESTIONS, DOES
THES SUBSET OF COLLABORATION
CORRELATE WITH INCREASED
PRODUCTIVITY SO TRYING TO GET AT
THE VALUE ADD WHETHER OR NOT
THERE'S A VALUE ADD OF
COLLABORATION AND THE RATE OF
PROGRESS IN THOSE AREAS OF
RESEARCH AND WHICH WE CAN
MEASURE ALONGSIDE OF THE AGE OF
THE DIFFERENT TOPICS THAT ARE
REPRESENREPRESENTED IN THE PORT.
WE'LL START WITH THAT FIRST
QUESTION.
WHICH TOPICS AND I'LL WALK YOU
THROUGH THIS VERY COMPLICATED
IMAGE.
IF IT IS A REPRESENTATION OF ALL
13 TOPICS, EACH OF THESE CIRC
MANIEELS IS ADETERMINED THE NUM,
THAT IDENTIFIES WHICH
PUBLICATIONS ARE ASSIGNED TO
EACH TOPIC.
IT'S NOT WORK FREQUENCY AND
THERE'S WORD CLOUDS THESE ARE
THE CENTRAL TENANCY IN EACH
THOSE ARE INDICATED HERE FOR
EACH OF THE CIRCLES AND YOU CAN
SEE A NUMBER OF TOPICS AND TO
HIS TALK AND CANCER AND
IMMUNOTHERAPY AND TECHNOLOGY AND
HOSPITALIZATION AND IT'S NOT
SURPRISING AND IS A HUB TOMORROW
AND WALK YOU THROUGH THE REST OF
THE BEACH AND THE NUMBER OF
PUBLIC TO THAT AND TOP PARTY AND
FINALLY, LINES THE TOPICS AND
THERE ISN'T A LINE SO THERE'S AB
SEN OF A LINE AND JUSTIFY THE
CONNECTION OF THE TOPICS AND IF
THEY ARE CONNECTED AND WHY THERE
WOULD BE A AND GENERAL AND KINDS
OF MAPS AND RESEARCH AND
RESEARCH TOPICS AND OVER HERE ON
THE LEFT AND LOCATION FOCUSED
AND RESEARCH AND WE HAVE A BASIC
MAP LIKE THIS AND WE CAN PAINT
THIS SO TO SPEAK AND PARAMETER
AND I'M SHOWING YOU IS A NUMBER
OF POLITICIANS AND DEDICATORS
AND YOU CAN SEE IT TWO
PARTICULAR TOPICS THAT STAND OUT
AND THE REST AND GIVES YOU A
READ OUT ON HOW AND THE SECOND
TOPIC AND COLLABORATION IS
BETWEEN ACROSS THE NIH AND A
RURAL COMMUNITY BETWEEN OTHER
NIH RESEARCHERS THAT ARE OVER AT
NIH AND THE THIS GRAPH TELLS YOU
THE NUMBER OF PUBLICATIONS THAT
ARE LIMITED TO A SINGLE
INTRAMURAL LABORATORY AND YOU
CAN SEE IT'S A PERCENTAGE FOR
THE CLINICAL CENTER RESEARCHERS
AND RESEARCH COMMUNITY AT LARGE
AND IT'S REFLECTED IN THE REST
OF THE DISTRIBUTION AND THERE'S
A LESS INTRA IC SO COLLABORATION
BETWEEN CLINICAL CENTER
INVESTIGATORS THEN THERE IS AT
LARGE AGAINST THE PROGRAM AND
THEY COLLABORATIONS WITH OR OR
THREE AND THESE ARE AUTHORS WITH
NON NIH A
AFFILIATIONS AND YOU CAN SEE
THAT REPRESENTATION OF
COLLABORATIONS WITH EXTRAMURAL
ASK PARTICIPANTS AND AUTHORS IS
HEALTHY AMONGST THE CLINICAL
CENTER RESEARCH.
AND DOWN HERE ON THE BOTTOM LEFT
YOU CAN SEE THAT THE ENTIRE IRP
DATA COST US 22,000 PUBLICATIONS
SO IT'S A LARGE COMPARE GROUP.
LOOKING AND DISTRIBUTING THOSE
PUBLICATIONS, IN TERMS OF THE
COLLABORATIONS ACROSS THE
DIFFERENT ICs IS TO CONSIDER
YOU CAN SEE THE CANCER
INSTITUTION AND INFECTIOUS
DISEASE HAVE THE LARGEST INEXTRA
MUR CAL PROGRAMS AND THE EXTENT
OF COLLABORATION IS THE GREATEST
AND THERE'S NO DOUBT REFLECTS
THE HISTORY BY DISORDERS AND
KIDNEY OF THE FOURTH PLACE
REFLECTS THE HISTORY THAT JOHN
OUTLINED AS WELL.
AND IT'S MOST TIGHTLY CONNECTED
WITH HAVING DEVELOPMENT AND BOTH
CLINICAL TRAILS AND PATENTS AND
YOU CAN SEE BOTH THE CLINICAL
CENTER AND MUTUAL PROGRAM AT
LARGE SHOW THAT CORRELATION.
IN THE FINAL TOPIC, LOOKING AT
THE RATE OF PROGRESS AND THIS IS
OUR MOST RECENT RESEARCH AND
DEVELOPMENT AND ARTIFICIAL AND
INTELLIGENCE MYTHOLOGY LOOKING
AT EMERGENCE AND PROGRESS AND
TOPICS AND THE MOMENTUM OF THE
RESEARCH TOPICS, HOW FAST THEY'E
GROWING AND ACQUIRING PURCHASE
AS TOPICS IN TERMS OF THEIR
INFLUENCE ON THE SCIENTIFIC
COMMUNITY AT LARGE INCLUDING
BREATHING IN INTEREST FROM OTHER
ADJACENT AREAS OF RESEARCH AND
THESE ARE ALL INHERENT IN THE
KINDS OF METRICS THAT WE
DEVELOPED TO ANSWER THOSE
QUESTIONS.
WE LOOK AT EMERGING AREAS, WHAT
TOPICS HAVE THE HIGHEST
PERCENTAGE OF CLINICAL AND OVER
THE ENTIRE LANDSCAPE AND THERE
ARE ROUGHLY AT ANY GIVEN TIME
OVER 20,000 DIFFERENT TOPICS AND
WE SUFFER THE SUBSET WITH THE
900 PLUS PUBLICATIONS THAT
EMERGED FROM THE CLINICAL CENTER
LABS OVER THE PERIOD.
THIS FOUR YEAR PERIOD AND THEN
WE CAN ASK WHAT PERCENTAGE OF
THOSE PUBLICATION TO THE
PUBLICATIONS AND THEN WHAT DOES
THAT LOCK LIKE WHEN WE LOOK AT
CLINICAL STUDIES AND SO I'LL
WALK YOU THROUGH THE DIFFERENT
COMB PHONE ANCOMPONENTSOF THE M.
WE IT DETERMINE THE TOPIC AGE
AND I'M NOT GETTING INTO THAT
THE WEEDS BUT WE DETERMINE THE
AGE OF EACH TOP PICK AND THAT
RANGES FROM VERY RECENT TOPICS
AND IT WILL MAKE THE MEASURE
THAT I WAS MENTIONING AND ONCE
AGAIN, WE CAN EVEN THOUGH THIS
REPRESENTATION IS DETERMINED BY
THE CO SERTATION NETWORK OF EACH
PAPER AND THAT TOPICS ARE
DETERMINED AND DEFINED BY THE
ACTUAL ACTIVITY OF SCIENTISTS AS
THEY CITE EACH OTHER WORKS SO
THE TOPICS WERE BASED ON THE
CONTENT OF THE PUBLICATION OF
THE TITLE AND ABSTRACTS THIS IS
BASED ON PRATT OF SCIENCES THAT
THEY CITE EACH OTHER AND ONE OF
THE REASONS WHY IT'S MORE
GRANULAR IN TERMS OF MORE
PRESENTATION OF THE TOPICS AND
YOU SEE MORE DATA POINTS HERE
AND I'M SHOWING YOU THREE TERMS
OF THE RESEARCH EACH OF THESE
DATA POINTS AND THE SIZE OF THE
DATA POINTS REFLECT THE TOTAL
NUMBER OF PUBLIC STUDIES AND IT
GIVES YOU AN IDEA OF THE SCOPE
OF THE PARTICULAR TOPIC.
AND THEN THE HEAT MAPPING WHICH
YOU CAN DO IN A NUMBER OF
DIFFERENT WAYS AND HERE IS
REPRESENTING THE NUMBER OF
STUDIES PUBLISHED BY CLINICAL
CENTER INVESTIGATORS SO YOU CAN
SEE THERE'S A DISTRIBUTION FROM
THE HIGH-END OF 20% OF PAPERS
ARE CLINICAL CENTER PUBLICATIONS
AND DOWN TO THE BOTTOM END IS 2%
IS ABOUT THE LOWEST END OF THIS
HEAT MAPPING THAT YOU SEE HERE.
THIS LINE AT ZERO REPRESENTS THE
RATE OF PROGRESS OF THE TYPICAL
BIOMEDICAL RESEARCH TOPIC THIS
PROVIDES AN IMPORTANT BENCHMARK
THAT WE SOMETIMES DIVIDE INTO
QUADRANTS IN TERMS OF THE AGE OF
TOPICS SO WE CAN LOOK AT
DIFFERENT QUADRANTS AND THE
FAST-MOVING TOPICS THAT ARE
RELATIVELY NEW, YOUNG TOPICS AND
VERSUS LOW MOVING OLDER TOPICS.
SO TO THAT POINT, THIS SHOWS YOU
LABELS FOR THE FAST-MOVING AND
THESE ARE TOPICS THAT ARE
EQUIVALENT TO THE FASTEST MOVING
TOPICS ACROSS THE BIOMEDICAL
RESEARCH LITERATURE AND SO
SOMETIMES THERE ARE SURPRISES IN
LOOKING AT THESE THINGS THAT
MIGHT HAVE ESCAPED NOTICE OF
SUBJECT MATTER EXPERTS AND
SOMETIMES THEY'RE VERY FAMILIAR
IN THIS CASE, A CAR T
METHODOLOGY THAT ONE WOULD
EXPECT TO BE IN THE FAST-MOVING
TOPICS IDENTIFIED BY A METHOD
LIKE THIS.
AND THEN, CONVERSELY, DOWN AT
LOWER END, THE SLOWER MOVING
TOPICS, AGAIN, WE WANT TO
EMPHASIZE, THESE ARE ALL FLAG
FOR INSPECTION, RIGHT.
THESE ARE THINGS THAT ONE CAN
IDENTIFY AS TOPI TOPICS, ESPECIY
THE OLDER TOPICS AND UNDERSTAND
OFTEN ALMOST ALWAYS IT'S THE
CASE THAT THESE ARE STILL VERY
IMPORTANT TOPICS AND THERE MIGHT
BE HURDLES THAT NEED TO BE
OVERCOME AND THE DECISION MAKERS
CAN TRY TO UNDERSTAND ONCE THE
IDENTIFICATION HAS BEEN MADE AND
IT'S FAST-MOVING TOPICS THERE
MIGHT BE WAYS TO SPEED THE
RESEARCH UP FURTHER OR STAND
INTO DIFFERENT AREAS SO AWFUL
THIS AGAIN IS USEFUL BY HUMAN
DECISION MAKERS AS THE
ENGAGEMENT OF THIS ANALYSIS AND
INFORMATION THAT CAN SUPPLEMENT
THEIR SUBJECT MATTER EXPERTISE.
I MENTIONED LOOKING AT, THIS IS
A DIFFERENT HEAT MAP AND I'M
LOOKING AT THE PERCENT OF THE
PUBLICATIONS THAT ARE CLINICALLY
FOCUSED AND YOU CAN SEE
ESPECIALLY AMONGST THE
FAST-MOVING TOPICS, IN FACT
THERE DOES LOOK LIKE THERE'S A
DISTRIBUTION HERE OF THE FASTER
MOVING TOPICS BEING MORE FLEW
ENTERALLY FOCUSED AND BY AND
LARGE OVER ALL, AS I INDICATED
WITH THE CLINICAL IMPACT I
MENTIONED AT THE BEGINNING AND
THE CLINICAL CENTER PUBLICATIONS
ARE NOT SURPRISINGLY HEAVILY
CLINICALLY FOCUSED AND
ESPECIALLY TRUE AMONGST THE
MASTER MOVING TOPICS THAT ARE
SHOWING VERY RAPID RATE OF
PROGRESS.
AND NOW I WANTED TO GIVE A SHOUT
OUT TO THE FOLKS WHO DID THIS
WORK.
THE OPA TEAM AND MENTION ALSO
THAT WE ARING DEVELOPING A
PUBLIC FACING TOOL THAT WE'RE
HOPING TO DELIVER AS A LIMITED
BETA VERSION IN THE NEXT FEW
MONTHS AND YOU CAN FOLLOW US ON
TWITTER FOR UPDATES OR GO TO OUR
WEBSITE AND I PUT THAT IN THE
CHAT AND THIS IS JUST A SCREEN
CAPTURE FROM I CURRENT STATE OF
DEVELOPMENT OF THE TOOLS AND THE
PHOTOGRAPHIC I GUESS OF THE TOOL
IS TO PROVIDE A SIMPLE WAY TO
ENGAGE WITH THE INFORMATION OR
FOR POWER USERS A VERY DETAILED
AND ANALYTIC APPROACH TO
ENGAGING WITH BIOMEDICAL
RESEARCH LANDSCAPE AT LARGE AND
ALSO LOOK AT THE SUBSET THAT ARE
FUNDED BY NIH OR LEAD TO NIH
INVESTIGATORS AND THE GUN
PROVIDE THIS ANALYTICAL RESOURCE
PUBLICLY THAT ALLOWS THE KIND OF
ANALYSIS THAT WE DO INTERNALLY
AND THERE'S AN API FOR TONE LOAD
THE DATA AT SCALE AND SO I URGE
YOU TO LOOK FOR THAT IF YOU ARE
INTERESTED AND SIGN UP AS A BETA
USER.
AND FINALLY, JUST TO SUMMARIZE
WHAT I TOLD YOU, THE CLINICAL
RESEARCH HAS PUBLISHED IN THIS
FOUR YEAR PERIOD BETWEEN 2017
AND 2020 AND 23% WERE
COLLABORATIVE ABOUT OTHER ICs
AND 60% WITH RESEARCH EITHER IN
AT TERNE ACTIVELY OR IN ADDITION
TO THE COL LAB RATERS AND THE
PIs DEPARTMENT AT THE MOST
WITH RESEARCHERS FROM THE CANCER
INSTITUTE AND ALLERGY AND
FEBRUARY ANXIOUS DI -- AND 95%Os
THIS IS A HIGH PERCENTAGE AND
COLLABORATORS ARE STARTING AT
THE NIH OR BOTH AND IT'S
ESPECIALLY INTERESTING BECAUSE
OF THE CORRELATION THAT I SHOWED
YOU BETWEEN THE FULL INTERNAL
POPULATION BETWEEN TRUE
COLLABORATION AND IMPACT AND
ESPECIALLY IMPACT THAT MOST
PROMISING WITH RESPECT TO DEVICE
DEVELOPMENT THAT HAS BOTH
CLINICAL AND TECHNOLOGICAL
IMPACT.
AND THEN IN TERMS OF THE MAPPING
TO TOPICS, THE MAPS TO TOPICS
THAT ARE CLINICALLY FOCUSED AND
MODERATE TO FAST RATE AND THEN
OF THE 13 TOPICS, FOUR WERE
NOTEWORTHY BECAUSE THEY STOOD
OUT WITH CLINICAL CITATION AND
THE HOSPITALIZATION TOPIC WHICH
WAS A HUB IN PERHAPS NOT
SURPRISINGLY, IN THE OVER ALL
SPECTRUM OF CLINICAL CENTER
COMPLICATIONS AND THE
COMPUTATIONAL OUTREACH FOR HEAT
LEARNING AND ACROSS THE BIO
MEDICAL LANDSCAPE AND THE PAT
END CITATIONS AND CAR T AND
THERAPY STOOD OUT IN TERMS OF
THE NUMBER OF DIFFERENT NIH
COLLABORATIONS AND THEN FINALLY
THE TOTAL COMPLICATIONS AND SOL
ABERRATIONS THE TOPICS STOOD OUT
IN THAT AREA.
SO WITH THAT, I'M HAPPY TO TAKE
ANY QUESTIONS THAT YOU MIGHT
HAVE AND THANK YOU FOR LISTEN
LISTENING.
>>THANK YOU, I APPRECIATE THIS
PRESENTATION.
ARE THERE DISCUSSI QUESTIONS OR
DISCUSSION FROM ANY MEMBERS OF
THE BOARD.
>>THANK YOU, THAT WAS A
TERRIFIC PRESENTATION.
DID I UNDERSTAND THAT YOU WILL
RELEASE THIS TOOL OUT TO THE
PUBLIC SO THEN INSTITUTIONS %AN
USE THE SAME PORTFOLIO ANALYSIS
ON YOUR OWN PORTFOLIO OF
RESEARCH, IS THAT CORRECT?
>>YES, SOME OF THE METHODS THAT
I'VE PRESENTED HAVE TO BE
PUBLISHED.
TRANSPARENCY AND DATA SHARING IS
AT THE HIGHEST LEVEL IN OUR
MISSION OF IMPORTANCE SO WE
PUBLISHED ALL OF OUR METHODOLOGY
AND SHARE THE CODE AND SO AS THE
REMAINDER OF WHAT I SHOWN YOU
THAT HASN'T BEEN PUBLISHED IS
ROLLED OUT IT WILL BE TRUE THAT
INVESTIGATORS WITH THE DESIRE
AND EXPERTISE TO DO THAT AND
DOWNLOAD THE DATA PRODUCTIVITY
TO API, SOMETIMES WE DO ANALYSIS
THAT ALSO INVOLVED SENSORY DATA
THAT IS NOT PUBLICLY AVAILABLE
SO THOSE OBVIOUSLY WON'T BE
PRESENTED ON THE WEBSITE.
THOSE OF YOU ARE FAMILIAR WITH
THAT ROTTER AND THE DATA FIELDS
IN THIS TOOL WE'RE DEVELOPING
WILL NEAR OR EXACTLY SO THE DATA
WILL BE THE SAME AND IT WILL BE
PRESENTED IN A WAY THAT IS
FOCUSED ON ANALYTICAL FUNCTIONS
AND THROUGH THE API SUPPORT THE
KIND OF ANALYSIS THAT ARE
DESCRIBED IN THE LITERATURE.
>>EXCITING.
MANY STRUGGLE TO UNDERSTAND THE
PORTFOLIO AND IT SOUNDS LIKE
THEY'RE WONDERFUL ADDITIONS TO
THAT ANALYSIS SO TERRIFIC JOB.
>>THANK YOU, YEAH, IT'S FOCUSED
ON SUPPORTING BUSINESS
INTELLIGENCE OF ALL SORTS.
INVESTIGATORS THEMSELVES,
PRACTITIONERS OR INSTITUTIONS
LOOKING TO MANAGE THEIR
PORTFOLIOS AND DO THESE KINDS OF
ANALYSIS, ABSOLUTELY.
>>DAVE --
>>I WAS JUST CURIOUS TO KNOW IF
ANY OR TO WHAT EXTENT THE TOOLS
IS IN USE OUTSIDE OF YOUR OFFICE
THAT YOU TRAINED OR IMPLEMENTED
ELSEWHERE.
>>GREAT QUESTION.
SO ACTUALLY I SEARCH THE PUBLIC
FACING TOOL WE CALLED EYE SEARCH
ANALYANALYTICS ACROSS NIH SINCE9
CALLED I SEARCH AND WE ALSO HAVE
AN EXTENSIVE TRAINING PROGRAM
FOR SO THEY CAN USE THE TOOL AND
DO SOME THAT WE DO ON OUR TEAM
FOR THEMSELVES AND PROVIDE
ACCESS TO ALL OF THIS RICH
SOURCE OF DATA ABOUT
PUBLICATIONS, GRANTS, CLINICAL
TRIALS, PATENTS, ET CETERA.
>>THANK YOU.
>>DR. TABAK.
>>SO JUST TO REINFORCE THAT
POINT THAT GEORGE JUST MADE, I
USE THIS TOOL ALL THE TIME.
IF I CAN USE IT, ANYBODY CAN USE
IT.
AND WHERE I USE IT IN
PARTICULAR, IS I'M OFTEN ASKED
TO COMMENT ABOUT PROMOTIONS, AND
TEN YOUR DECISIONS AND SO
FOURTH.
AND IN AN ERA WHERE EVERYBODY IS
AFFLICTED WITH CNS DISEASE, IF
IT'S NOT PUBLISHED AND MADE FOR
SCIENCE IT DOESN'T COUNT, WHAT
YOU ARE ABLE TO SHOW WITH THIS
STOOL THERE ARE PUBLICATIONS,
BODIES OF PUBLICATIONS THAT ARE
HIGHLY INFLUENTIAL ON THE FIELD
AND LOW AND BOW HOLD THEY'RE NOT
PUBLISHED IN SCIENCE SO OR
NATURE.
-- TOOL KNOWN TO YOUR
COLLEAGUES, GEORGE CONTINUES TO
TRY TO GET THE WORD OUT BUT
SOMETIMES LIKE THE CLINICAL
CENTER, IT'S A WELL KEPT SECRET.
SO THANK YOU VERY MUCH, GEORGE.
>>THANK YOU, LARRY, APPRECIATE
THAT.
>>ANY QUESTIONS OR DISCUSSIONS?
Dr. GOLDSTEIN.
>>I WASN'T TRYING TO TALK.
>>THANK YOU.
VERY MUCH.
THANK YOU Dr. SANTANGELO
REALLY APPRECIATE IT AND THANK
YOU AND WE LOCK FORWARD TO
SEEING THE TOOL IN MORE GENERAL
USE.
I CERTAINLY MY ORGANIZATION
WOULD BE APPRECIATE TIVE OF THAT
TOOL AS WELL.
WITH THIS WE ARE A LITTLE BIT
AHEAD OF TIME SO I WOULD LIKE TO
GO AHEAD THIN AND PROPOSE WE GO
AHEAD AND TAKE OUR BREAK NOW AND
WE WILL RECONVENE AT 11:20.
IF WE CAN MOVE THAT PRESENTATION
10 MINUTES UP AS WELL WITH THAT,
LET'S GO AHEAD AND TAKE A
10-MINUTE BREAK AND WE CONVENE
AT 11:20.
THANK YOU.
>>THE TITLE IS GENE THERAPY AND
SO I'D LIKE TO GO AHEAD --
>>IF I CAN JUST ADD, IN THE
LAST, IN THE JULY MEETING, WE
REFERRED TO THE EFFORT TO TAKE
CARE OF THESE TWO CHILDREN AND
THIS IS THE IN-DEPTH OF YOU TO
REPHRASING WE DID TO TAKE CARE
OF THE TWO INFANTS AND IT'S
PREPARATORY TO THE DISCUSSION
THAT WILL FOLLOW WHICH HAS TO DO
WITH DOING WHAT WE DID FOR GM1
GANGLLOSIDOSIS SO I WANT THEY
HAVE TO HAVE THE NEXT TWO
PRESENTATIONS.
>>Dr. TIFFT, I'LL TURN IT
OVER TO YOU.
>>CAN YOU HEAR ME?
>>WE CAN HEAR YOU AND SEE YOU.
>>PERFECT.
TRISH, IF YOU CAN BRING UP OUR
SLIDES.
WE'RE GOING TO DO THIS AND SHE
WILL ADVANCE THE SLIDES FOR US
BUT THANK YOU FORGIVEN US THE
OPPORTUNITY TO TALK ABOUT WHAT I
THINK IS SOMETHING REALLY
SPECIAL THAT I HOPE WILL BE ABLE
TO TRANSLATE INTO A LOT OF
THINGS --
>>DO YOU SEE THE SLIDES.
>>I DO NOT.
ALL I SEE IS MY FACE.
GANGNEUNG.
>>JUST TO HELP YOU SET THE
CONCESSION HERE, GANGLIOSIDOSIS
IS PART OF A LARGE COLLECTIVE
AND THESE ARE ALL MULTI-SYSTEM
DISEASES CHARACTERIZED BY
DYSFUNCTION IN LIE SEW ZONES AND
70 INDIVIDUAL DISORDERS AND EACH
WITH THEIR OWN GENETIC MUTATION
AND MOST HAVE A PROGRESSIVE
CLINICAL COURSE PLUS OTHER
SYSTEM MANIFESTATIONS AND OFTEN,
THEY HAVE SYMPTOM ONSET AND
ACROSS THE SPECTRUM, INFANCY,
CHILDHOOD AND SOME EVEN INTO
ADULT FOOD, IT'S INDIVIDUALLY
QUITE RARE BUT COLLECTIVELY
THEY'RE FAIRLY COMMON AND ONE IN
ABOUT 5,000 LIVE BIRTH.
SO, OUR DISORDER THAT WE'LL TALK
ABOUT GM1, IS AS I SAID, A
RECESSIVE DISORDER CAUSED BY
MUTATIONS IN THE GREEN GLB1.
IT PRODUCES A DEFICIENCY IN AS
YOU CAN SEE IT'S REALLY AT THE
VERY TOP OF THE CASCADE TAKING
GM1 GANG LEO SIDES.
GM1 IS RARE AND IT'S UNIFORMLY
FATAL AND IT'S NEURODEGENERATIVE
AND UNIFORMLY FATAL AT ALL
STAGES.
IT HAS NO APPROVED THERAPIES.
THIS PANETH NICK ABOUT 1/200
LIVE BIRTHS AND A FEW ISOLATES
IN BRAZIL AND IN ROAM A WHERE
THEY'RE FOUNDER MUTATIONS SO
IT'S POPULAR IN THOSE SO WE HAVE
SEEN PATIENTS FROM ALL OVER THE
WORLD AND NEWBORN SCREENING IS
NOT YET AVAILABLE FOR GM1
ALTHOUGH THIS IS A WORK IN
PROGRESS.
NEXT SLIDE.
AS I SAID, THIS IS A MULTI
SYSTEM DISORDER EFFECTING THE
CNS AND BY THE DEPTH OF THE
LINES HERE YOU CAN SEE IT
INVOLVES PROGRESSIVELY AND NEURO
REGENERATION AND THE VARIABLE
SKELETAL DYSPLASIA AND NEXT
SLIDE.
AND IT IS A CONTINUUM WHICH
MEANS THAT THE DISEASE SEVERITY
INCREASING AS THE RESIL YOU'LL
ENZYME ACTIVITY DECREASES SO
PATIENTS WITH TYPE ONE INFANTILE
DISEASE AND THESE ARE TWO OF THE
PATIENTS THAT WE'VE TREATED THAT
Dr. GILMAN MENTIONED HAVE
ONSET AT LESS THAN SIX MONTHS OF
AGE WITH SEVERE HYPO TONIA AND
BASICALLY DEVELOPMENTAL PLAT
TAUING AROUND THE TIME OF
SITTING.
THEY HAVE TERRY RED MACK YOULY
AND DEVELOP SEIZURES, AND
PROGRESSIVELY BECOME
INCREASINGING DEBILITATED WITH
SEIZURES AND SUCCUMB TO THEIR
DISEASE BIAS PIRRATION PNEUMONIA
OR SEIZURES.
THE TYPE 2 ARE LATE INFANT, TYPE
2 IS SUBDIVIDED AND THIS IS
SOMETHING WE DID AND INTRODUCED
THE LITERATURE BASED ON OUR
NATURAL HISTORY STUDY WE DID AT
THE NIH.
WE CALLED THEM LATE INFANTILE
AND TYPE 2B OR JUVENILE.
THE LATE INFANTILE MEET THEIR
MILESTONE AT 12 MONTHS AND THEY
HAVE ONSET BETWEEN 12 AND 14
MONTHS WITH IMPAIRED AMBULATION
AND THEY NEVER GET TO BE GOOD
WALKERS.
THEY HAVE SOME SPEECH AND THEY
DIE IN THEIR MID TEENS.
JUVENILE BETWEEN THROW AND SIX.
THEY DO FINE IN PRE-K AND FINISH
KINDERGARTEN WORSE THAN THEY
STARTED.
THEY DEVELOPED A STUTTERING
SPEECH THAT PROGRESSES AND THEY
CAN NO LONGER SPEAK AND THEY
HAVE DECREASED COGNITION.
SOME HAVE SKELETAL DISEASE AND
SOME DO NOT AND SURVIVAL INTO
THE FOURTH DECADE BECAUSE MY TWO
OLDEST PATIENTS ARE IN THEIR
EARLY 30s AND A TYPE 3, ADULT
ONSET THAT I HAVE NOT SEEN AND
IT'S MUCH MORE COMMON IN JAPAN
WHERE THEY DEVELOP UNTIL EARLY
ADULTHOOD AND THEY HAVE VARIABLE
TIME OF DEATH AND SOMETIMES THEY
DIE OF I CAUSES BEFORE GM1.
LATER ONSET DISEASE MEANS
GREATER VARIABILITY IN DISEASE
PROGRESSION.
SO THE INFANTILE HAS A NARROW
WINDOW OF ONSET AND A STANDARD
OR HOMOGENEOUS DECLINE.
THE LATE INFANTILE IS LESS AND
THE JUVENILE IN THE RANGE WHERE
THEY START DEVELOPING SYMPTOMS
IS A LITTLE MORE VARIABLE AND
THE RANGE OVER WHICH THEY
ACTUALLY SUCCUMB TO THEIR
ILLNESS IS MORE VARIABLE THAN
THAT.
AND THE NEXT SLIDE, I MENTIONED
OUR NATURAL HISTORY STUDY WITH
THE LAST 10 YEARS AT THE NIH
WE'VE BEEN LOOKING AT A COHORT
OF NATURAL HISTORY PATIENTS, 41
OF THEM INCLUDING 30 PRO BANS
THE REST OF EFFECTED SIBLINGS,
WE'VE SEEN 17 LATE INFANTILE AND
24 JUVENILE PATIENTS AND THE
THING THAT I'M TRYING TO SHOW
YOU ON THE RIGHT, FROM THE TIME
OF SYMPTOM ONSET IN THE SOLID
BAR, TO THE TIME OF DIAGNOSIS IN
THE OPEN BARS, IS WAIT TOO LONG.
17.5 MONTHS FOR LATE INFINE
STYLE PATIENTS AND 10 FOR
JUVENILE PATIENTS AND THEY'RE
ADAPTIVE BEHAVIOR PLATEAU AND
THEY DECLINE AND THEY DEVELOP
PROGRESSIVE BRAIN AT TROPHY AND
IT ALSO TRACKS WITH BEHAVIOR AND
COGNITION AND THEY HAVE
ELEVATION OF A UNIQUE BIOMARKER
THAT WE'RE USING AS A READ OUT
FOR TREATMENT EFFICACY AMONG
OTHER THINGS.
AND THE NEXT SLIDE, YOU CAN SEE,
THE DESIGN OF THE GENE THERAPY
TRIAL THAT WE INSTITUTED FOR
THESE PATIENTS AND IT WAS A DOSE
RANGING STUDY THIS STAGE ONE HAS
BEEN A DOSE RANGING STUDY WHERE
WE'VE TREATED PATIENTS WITH LOW
DOSE AND INTRAVENOUSLY AND IT'S
AN AAB9 BASE GENE THERAPY VECTOR
AND WE'VE TREATED NOW THREE
PATIENTS WITH A HIGH DOSE WHO
ARE TYPE 2, LATE INFANTILE OR
JUVENILE AND TWO PATIENTS TWO
INFANTS AT THE LOW DOSE.
ALL OF OUR PATIENTS RECEIVED
IMMUNE AND COURT CODES AND ALL
OF OUR PATIENTS HAVE SINCE ROW
GAINED THEIR B CELLS AND ARE
DOING FINE POST THEIR GENE
THERAPY.
I PUT THE LARGER KIDS ON THE
RIGHT BECAUSE THESE ARE THE KIDS
WE TREATED FIRST.
THE TYPE 2 CHILDREN AGES 1-12
YEARS.
THEY HAD TO HAVE THE DISEASE BY
GENETIC AND BIOCHEMICAL ANALYSIS
AND THEY HAD TO BE AV9 NEGATIVE
FOR ANTIBODY STATUS AND WE
LOOKED AT THEIR DISEASE
SEVERITY.
THEY HAD TO SCORE GREATER THAN
40 ON THE BEHAVIOR SCALE.
IN OTHER WORDS THEY HAD TO HAVE
SOME FUNCTION LEFT BECAUSE THE
LOWEST YOU CAN SCORE IS A 20.
WE HAD TO SEE SOME ABILITY TO
EITHER DETECT IMPROVEMENTS OR
DECLINES.
AND THEN, SINCE THE INFANTILE
PATIENTS HAVE A MORE HOMOGENEOUS
PROGRESSION, WE JUST SAID THEY
HAD TO BE BETWEEN 6 AND 12
MONTHS OF AGE AND HAVE
DOCUMENTATION OF THE DISEASE.
OUR KEY END POINTS ON THE RIGHT,
OBVIOUSLY THIS WAS A PHASE 1
STUDY INFORM SAFETY AND
INTOLERABILITY WAS THE PRIMARY
END POINT.
THE SECONDARY AND EXPLORATORY
END POINTS INCLUDED THE CLINICAL
GLOBAL IMPRESSION SCALE AND
DEVELOPMENTAL CHANGES BY THE
ADAPTIVE BEHAVIOR SCALE, MRI
SCANS AND THE LEVEL OF MEASURE
OF BRAIN HEALTH ON MR SPECIFIC
TOSCA PEE AND THIS UNIQUE
BIOMARKER AND IN ADDITION TO GM1
GANGLIOSIDOSIS AND SPINAL FLUID
AND ENZYME LEVELS IN PLASMA AND
CSF.
AND ON THE NEXT SLIDE, CAN YOU
SEE A PHOTOGRAPH OF OUR FIRST
HUMAN MAY EIGHTH, 2019.
THIS WAS THE FIRST JUVENILE
PATIENT WHO RECEIVED THERAPY.
AND IT WAS OBVIOUSLY A BIG DAY.
WE HELD A TEA PARTY.
AND THE NEXT SLIDE, YOU SEE NOW
THE DEMOGRAPHICS OF THE SUBJECTS
THAT HAVE BEEN TREATED WITH LATE
INFANTILE DISEASE.
THE VAST MAJORITY OF THESE
PATIENTS WERE TREATED DURING THE
PANDEMIC, WHICH WAS A BIT OF A
CHALLENGE BUT ACTUALLY TO BE
HONEST, IT HELPED US IN SOME
WAYS BECAUSE THERE WEREN'T A LOT
OF PATIENTS ON ONE NORTHWEST AND
WE HAD ABILITY TO GET THE
STUDIES WHEN WE NEEDED THEM AND
WE HAD OUTSTANDING NURSING.
AND THEN THE NEXT SLIDE, SHOWS
THE ADDITION OF THESE TWO
PATIENTS THAT ARE INFANTILE
PATIENTS THAT ARE REALLY THE
TOPIC OF THE DISCUSSION THAT
TRISH WILL OUTLINE SO HOW DID WE
GET FROM THE PREVIOUSLY TO THIS
SLIDE AND THE NEXT SLIDE A VERY
FAMILIAR CARTOON TO ALL OF YOU.
I THINK YOU SHOULD BE MORE
EXPLICIT HERE.
THE MIRACLE THAT OCCURRED IS THE
MIRACLE OF NURSING AND EVERY
DEPARTMENT IN THE CLINICAL
CENTER PULLING TOGETHER IN A
PROCESS THAT TRISH WILL EXPLAIN
HOW THAT ALLOWED US TO TREAT
THESE PATIENTS AND TO TREAT THEM
SAFELY.
SO TRISH, ALL YOURS.
>>THANK YOU Dr. TIFFT.
AS HEARD FROM THE INTRODUCTION,
THERE WAS A CLEAR NODE FOR THIS
STUDY.
REGARDLESS OF THE PEDIATRIC
COLLISIONS GIVING HOPE TO OUR
FAMILIES AND PATIENTS
REPRESENTING PORT AREN'T WORK
THAT WE ALL DO HERE.
WITH SUPPORT FROM EXECUTIVE
LEADERSHIP, TO ENSURE CLINICAL
READINESS AND THE CARE OF
INFANTS IN THE CLINICAL CENTER,
KEY STAKEHOLDERS FOR 14
DEPARTMENTS, FOUR SERVICES,
REPRESENTATIVES FROM CHILDREN'S
NATIONAL AND ONE RESEARCH TEAM
CAME TOGETHER TO CONDUCT A DEEP
DIVE INTO THIS STUDY.
WE TOOK A CLOSE LOOK AT TIMELINE
AND IDENTIFIED MEDS PROCEDURES
AND TREATMENTS THESE PATIENTS
WOULD NEED.
ALL OF WHICH WERE ASSOCIATED
WITH RISKS ESPECIALLY FOR
INFANTS WITH LOW TONE AND LOW
WEIGHT.
THIS BIG DIVE STARTED WITH THE
PERFORMING A FNEA AND A PROCESS
MANY OF YOU MIGHT BE FAMILIAR
WITH AND OFTEN USED IN THE
CLINICAL CENTER FOR HIGH-RISK
STUDIES.
FOR THIS FIRST IN HUMAN INFANT
GENE, THERAPY PROTOCOLS, THIS
IDENTIFIED RISK AND IN EIGHT
MAJOR AREAS.
THIS ANALYSIS HELPED IDENTIFY
VENERABILITIES AND ENSURED
SAFETY MEASURES WERE IN PLACE
ACROSS THE CLINICAL CENTER PRIOR
TOEN ROLLING THESE CHILDREN.
TO MITIGATE SOME OF THESE RISKS,
THE FMEA HAD ADDITIONAL RESOURCE
THAT'S WERE REQUIRED.
THE EMERGENCY RESPONSE PLAN
NEEDED TO BE EXPAND TODAY
INCLUDE AFTER HOUR INTENSE VEST
COVERAGE AND CHANGES TO THE
STRUCTURES OF THE CODE BLUE
TEAM.
THIS SYSTEM REVIEW REVEALED SOME
OF THE DEPARTMENTS DIDN'T HAVE
SUPPLIES NEEDED FOR THE CARE OF
INFANTS AND IN PART INCLUDE BE
RESEARCH LAB TUBES,
BREASTFEEDING SUPPLIES IN
EMERGENCY EQUIPMENT AND POLICIES
AND PROCEDURES REQUIRED TO
DEVELOPING USING BEST PRACTICES
MODELS.
IT WAS REQUIRED AND AT THE NIH,
CHILDREN LESS THAN THREE WERE
NOT HISTORICALLY ADMITTED TO THE
PEDIATRIC UNIT AND SINCE THIS
PATIENT WAS GOING TO BE ADMITTED
AHEAD OF PROCEDURES AND TESTS,
ACROSS THE CLINICAL CENTER,
EXPANDING CLINICAL COMPETENCY
WAS PARAMOUNT.
WHEN WE TOOK A CLOSER LOOK AT
THE GAPS, WE IDENTIFIED A FEW OF
THEM IN NURSING THAT WE WERE
ABLE TO EXPAND ON.
THEY WERE IN EQUIPMENT,
EMERGENCY RESPONSE AND IN
EDUCATION AND COMPETENCY.
IN EQUIPMENT WE NEEDED INFANT
EMERGENCY SUPPLIES AND JUST
NORMAL INFANT SUPPLIES AND SUCH
AS BREAST PUMPS, BOTTLE WARMERS
AND LOOKING AT THE BLOOD
COLLECTION VOLUME REDUCTION
STRATEGIES AND THE EMERGENCY
RESPONSE, WE NEEDED TO DO HANDS
ON TRAINING, SOME TEAM DYNAMICS,
COMMUNICATION AND RULES AND
RESPONSIBILITIES WITHIN A CODE
STRUCTURE.
AND THEN FOR THE EDUCATION AND
TRAINING CON TENNESSEE WE NEEDED
TO DEVELOP SOME DIDACTIC CLASSES
THAT TRAINED OUR NURSES TO CARE
FOR INFANTS AND WE ALSO NEEDED
TO LOOK AT OUR STANDARD SOPs
AND PROCEDURES AND THEN ALSO
REVIEW THEIR NURSING EMERGENCY
RESPONSE.
SO, BECAUSE WE DIDN'T HAVE
SUPPLIES THAT WERE NEEDED FOR
THE CARE OF INFANTS TO IDENTICAL
INFANT CARTS WERE CREATE, ONE
FOR ONE NORTHWEST OUR PEDIATRIC
UNIT AND ONE FOR ICU FOR OUR
CODE TEAM HOOKS.
WE NEEDED TO BOTH MOMS OF THE
INFANTS EXPRESSED THE NEED TO BE
ABLE TO BREASTFEED THEIR
CHILDREN SO BREAST PUMP ALONG
WITH THE POLICIES NEEDED TO BE
DEVELOPED.
IV START EQUIPMENT WAS NEEDED
FOR INFANTS SIZE ACCESS NEEDS.
AND BLOOD VOLUME COLLECTION
PRODUCTION STRATEGIES WERE
RECOVID-19 TO REDUCE THE AMOUNT
OF BLOOD COLLECTED FOR LABS.
USING THE INSTITUTE FOR
HEALTHCARE PROVEMENT TOOLKIT WE
EFFECT THE CAUSE AND EFFECT DROP
FOR THE COMPLEXITIES OF THE
PROCESS OF DRAWING LABS HERE AT
THE CLINICAL CENTER AND WE FOUND
THAT RESEARCH BLOOD WORK AND
CLINICAL BLOOD WORK THIS OFTEN
ORDERED SEPARATELY AND PATIENTS
WERE IN MULTIPLE PROTOCOLS THAT
CALL LAB TEST OVER UTILIZAT
UTILIZATION.
FOR INFANTS, THIS WAS A RISK.
WE TOOK THIS BACK TO OUR TEAMS,
AND THE RESEARCH TEAM, Dr.
TIFFT, ALONG WITH THE LAB,
WORKED TO MODIFY THE AMOUNT OF
RESEARCH BLOOD NEEDED FOR EACH
TUBE AND COMBINED THE TESTS.
WE TOO INTO CONSIDERATION THAT
BLOOD VOLUME COULD BE NEEDED FOR
CLINICAL LABS AND COULD INCREASE
THE VOLUME OF BLOOD DRAWN BUT
AFTER TIFFT IN THE LAB HAD TAKEN
A LOOK AT THE PROTOCOL AND WHAT
COULD BE REDUCED WE WERE ABLE TO
REDUCE THE RESEARCH LAB
COLLECTION VOLUME BY 70%.
INFANT EQUIPMENT WAS ADDED TO
THE CODE CART.
WE RECOGNIZED THAT THE WEIGHT
BASED CODE IN INCLUSION AND
DEPARTMENT AND INTO ONE KEY
LOCAL INCREMENTS THEY WERE ADDED
AT FIVE, SIX, SEVEN, ET CETERA,
KILOS EACH.
DECISIONS WERE MADE ON HOW TO
INCORPORATE OUR CHILDREN'S
NATIONAL INTENSE VEST AND
RESPIRATORY COLLEAGUES INTO OUR
CODE RESPONSE STRUCTURE AND IN
THE EVENT OF A CODE, THEY WOULD
RUN THE CODE.
EDUCATION AND TRAINING WAS
NEEDED FOR THE MANY AREAS OF
THESE PATIENTS WOULD BE
TRAVELING TO.
WE NEED THEY WOULD BE ON ONE
NORTHWEST IMPATIENT UNIT AND
THEY HAD THE POTENTIAL OF BEING
IN THE ICU FOR A SMALL AMOUNT OF
TIME IF NEEDED TO BE TRANSFERRED
TO CHILDREN'S AND WE ALSO KNEW
THEY WERE BEING GOING TO PACU
AND IR SO WE NEEDED TO TRAIN ALL
THESE NURSES IN THE CARE OF
INFANTS AND THIS INCLUDED
DIDACTIC AND EMERGENCY RESPONSE
IN ALSO SIMULATION.
AND THEN THE FOURTH THING WE DO
IS WE TOOK THIS SIMULATION
INSTITUTE AND TOOK IT DOWN TO
THE PEDIATRIC UNIT AND WORKED
WITH THE MULTI-DISCIPLINARY
TEAMS ALONG WITH OUR CHILDREN'S
NATIONALISTS INTENSE VESTS AND
RESPIRATORY COLLEAGUES AND DOWN
WITHIN THE UNIT ON ONE
NORTHWEST.
SO ALL AND ALL IT REALLY WAS
DIVIDED TO THREE PHASES.
THE FIRST PHASE WAS THE LECTURES
AND THE SKILLS STATION AND THE
SECOND PHASE WAS THE INTEGRATED
INLAB SIMULATIONS WITH OUR NIH
PROVIDERS AND PHASE 3 WAS OUR
INSTITUTE MULTI-DISCIPLINARY
SIMULATIONS WITH CHILDREN'S
NATIONAL.
WE THEN TOOK A LOOK AT THE
COMPETENCY AND POLICIES AND
PROCEDURES THAT WOULD NEED TO BE
INITIATED, REVIEWED OR UPDATED
BASED ON THE CARE OF INFANTS.
AND REALLY THEY DIVIDED INTO
THREE CATEGORIES.
SO VENUS AXIS, WE HAD NOT TAKEN
CARE OF CHILDREN THIS SMALL WE
KNEW THEY WOULD NEED A CENTRAL
ACCESS SO PICK LINE WAS DECIDED
AND BECAUSE OF OUR NIH HAD NOT
PLACED AND FOR QUESTION
GUIDELINES AND THE INFANT WITH
THE PICK LINE.
AS FAR AS CHEMOTHERAPY AND BIO
THERAPY, IT'S SOMETHING THAT
WE'RE COMMONLY DOING IN THE
CLINICAL CENTER HOWEVER WE HAD
NOT DONE THIS IN INFANTS SO WE
WENT BACKOUT AND IDENTIFIED
EVIDENCE-BASED PRACTICE
STANDARDS AND ALSO CONTACTED THE
ASSOCIATION OF PEDIATRIC AND
ONCOLOGY NURSE AND WE DEVELOPED
AND EXPANDED OUR POLICIES ON THE
CARE OF THESE PATIENTS RECEIVING
RITUXIMAB.
BECAUSE THE MOMS EXPRESSED
DESIRE TO CONTINUE BREASTFEEDING
WE REALLY NEEDED TO TAKE A DEEP
DIVE INTO OUR BREASTFEEDING
POLICIES WHICH WE DID NOT HAVE
TOO MUCH INTACT WITHIN THE
CLINICAL CENTER SO THIS WAS A
BIG PROJECT JUST HERE BETWEEN
BEING ABLE TO HAVE MANY
DIFFERENT AREAS LIKE NUTRITION,
NURSING, BIO MEDICINE,
INFECTIOUS DISEASE, CONTROL, AND
LACTATION ROM COORDINATOR TO BE
ABLE TO PUT THESE DOCUMENTS
TOGETHER AND REFRIGERATOR AND
WAYS TO HEAT THE MILK.
WHEN WE LOOK AT THAT AND HOW IT
WAS DONE WE REALLY TAKE A CLOSE
LOOK AT AND WE DISCOVERED THAT
THE METHODS OF EDUCATION,
TRAINING AND COMPETENCY
DEVELOPED FOR THIS PROTOCOL CAN
BE TRANSFERABLE TO NEW
PROTOCOLS.
AND IN FACT, WE HAVE SINCE DONE
SO IN ONE OR TWO OTHER
PROTOCOLS.
ON THIS ENDEAVOR DEMONSTRATED
CLOSE MONITORING OF TRAINING
PLANS, SAFETY AND BEST PRACTICES
IN BLOOD COLLECTION.
AND AT PRESENT OUR LAB AND
MATERIAL MANAGEMENT ARE VALUE
WAITING LOW TUBES THAT CAN BE
USED FOR PETE AT TRICK AND ADULT
PATIENTS THROUGHOUT OUT THE
CLINICAL CENTER AND IN AUGUST OF
2021, THE PEDIATRIC PLANNING
GROUP HAD EVALUATING PEDIATRIC
CARE AT NIH CLINICAL CENTER AND
TWO, CONDUCTING THE ASSESSMENT
OF THE FEASIBILITY OF EXPANDING
PATIENT VOLUME INCREASING THE
ABILITY TO MANAGE HIGHER ACUITY
PATIENTS AND REDUCING THE LOWER
AGE LIMIT FOR ADMISSIONS FROM
THREE YEARS TO SIX MONTHS OF
AGE.
SUBGROUPS WERE CREATED THAT
PROVIDED DETAILED
RECOMMENDATIONS INTO THREE
AREAS.
PEDIATRIC EMERGENCY MANAGEMENT,
PEDIATRIC CRITICAL CARE, AND
PEDIATRIC SPECIALTY COVERAGE.
A PROPOSAL WITH DETAILED
RECOMMENDATIONS HAS BEEN
SUBMITTED.
THIS WOULD NOT HAVE COME TO
FRUITION WITHOUT THE INVOLVEMENT
OF SO MANY.
WE WANT INSIDE PRESENTATION TO
SERVE AS AN ACKNOWLEDGMENT FOR
EVERYONE'S EFFORTS AND WE SHOULD
BE PROUD THIS STUDY SERVES AS A
REMINDER THERE CAN BE HOPE FOR
FAMILIES AND WHY WE DO THE
IMPORTANT WORK THAT WE DO AND
THAT THIS SLIDE IN OUR NEXT
SLIDE IS JUST A COUPLE OF
PICTURES JUST TO SHOW THE
PROCESS OF HOW WE TRAINED AND
ALL WHO WAS INVOLVED.
THANK YOU.
>>THANK YOU, VERY MUCH.
ARE THERE ANY QUESTIONS OR ANY
DISCUSSION?
>>NOT A QUESTION BUT WE STARTED
OUT THIS MEETING TODAY BEFORE IT
WAS ACTUALLY TIMED TO START, WE
STARTED TALKING ABOUT RSV AND
HOW ALL OF OUR HOSPITALS ARE
FILLED WITH SICK CHILDREN.
ONE OF THE MESSAGES WE SHARED
WITH EACH OTHER IS HOW DIFFICULT
IT IS TO SEE CHILDREN SICK AND
HOW WE ALL WORRY WHEN THEY ARE
SUFFERING OR THEY'RE INJURED OR
HAVE A TOUGH DISEASE AND I THINK
YOUR WORK IS SO IMPORTANT AND SO
INSPIRATIONAL AND I'M SURE IT
GIVES MANY, MANY FAMILIES HOPE
AND OPTIMISM SO THANK YOU FOR
ALL THAT YOU ARE DOING.
>>I JUST HAVE A QUESTION IF I
MAY.
HOW LONG WILL THESE CHILDREN BE
FOLLOWED?
ESPECIALLY THE ONES THAT THE
INFANTS THAT YOU JUST TOOK CARE
OF?
BECAUSE THEY REALLY NEED
FOLLOW-UP.
THAT WAS ONE QUESTION?
AND I CAN GET INTO THE DETAILS
LATER.
>>SO, IN ANSWER TO YOUR
QUESTION, ONE, WOVE TREATED TWO
PATIENTS AND THE FIRST PATIENT
WE TREATED UNFORTUNATELY
SUCCUMBED TO HER ILLNESS IN
MARCH OF THIS YEAR.
THE SECOND PATIENT IS
CURRENTLY -- WE JUST SAW BECOME
A COUPLE OF MONTHS AGO AND UNDER
THE TERMS OF, YOU KNOW, THE FDA
REQUIREMENTS FOR A PHASE 1AAV9
BASED GONE THERAPY WE SHOULD
TECHNICALLY TO BE FOLLOWING THEM
FOR FIVE YEARS.
TO BE QUITE HONEST, THE PATIENT
THAT -- THE SECOND PATIENT WE
JUST SAW BACK, WHEN IT'S TIME
FOR HER FOLLOW-UP, IN EARLY
2023, WORE GOING TO HAVE TO
ASSESS WHETHER SHE'S ACTUALLY
SHAVE TO TRAVEL FROM EUROPE BACK
TO THE CLINICAL TRIALS FOR
EVALUATION.
SO YOU KNOW, THESE PATIENTS ARE
QUITE FRAGILE.
AND IN THEORY YES WE WILL FOLLOW
THAT IN FIVE YEARS BECAUSE IT'S
THE REQUIREMENT AND IT WILL BE
TRUE FOR OUR JUVENILE PATIENTS.
WE JUST HAD OUR FIRST JUVENILE
PATIENT BACK INFORM HER THIRD
YEAR FOLLOW-UP SO YES WE'LL
FOLLOWING THOSE PATIENTS UP FOR
FIVE YEARS AT LEAST AND INFANTS,
AS LONG AS WE CAN.
>>YEAH, THANK YOU.
>>DAVID YOU HAD A QUESTION OR
COMMENT?
>>YES, I WAS JUST CURIOUS TO
KNOW WITH ALL OF THE LIST OF
THINGS THAT HAVE TO BE DONE, IN
PREPARATION AND UNDER
(INAUDIBLE) DID WE HAVE TO
CHANGE ANYTHING RELATIVE TO
(INAUDIBLE)?
>>I COULDN'T HEAR THE LAST OF
THE QUESTION.
>>DAVID, YOU BROKE UP.
>>CAN YOU HEAR ME NOW?
>>YES.
>>WITH ALL OF THE SEPARATIONS
THAT WE NEED TO CHANGE CERTAIN
PROCEDURES AND PROVIDING
(INAUDIBLE).
FAMILY MEMBERS DURING THE COURSE
OF THIS.
>>I DON'T BELIEVE --
>>THE QUESTION HAS TO DO WITH
THE VISITOR'S POLICY AND DID WE
HAVE TO CHANGE THE VISITOR'S
POLICY IN ORDER TO TAKE CARE OF
THE INFANTS AND I DON'T BELIEVE
WE DID.
>>WE'VE ALWAYS ALLOWED PARENTS
TO ROOM IN WITH CHILDREN AND
WE -- OF COURSE WITH INFANTS IT
WAS REQUIRED.
>>THANK YOU.
>>RICK.
QUESTION.
>>THANK YOU BOTH FOR REALLY A
GREAT PRESENTATION AND AS LONG
AS I'VE BEEN ON THIS BOARD, WE
HAVE TALKED ABOUT THE ENORMOUS
HOPE AND OPPORTUNITIES
ASSOCIATED WITH THIS KIND OF
GENE THERAPY FOR KIDS.
THE EFFORTS THAT YOU ILLUSTRATED
THAT WENT INTO CREATING THIS
SAFE ENVIRONMENT THAT WE DO THIS
WORK IS JUST INCREDIBLY
IMPRESSIVE AND REPRESENTS THIS
KIND OF CAN-DO ATTITUDE THAT
CERTAINLY HAS BEEN MY EXPERIENCE
THROUGH OUT MY TIME WITH THE
BOARD SO, YOU KNOW, THIS IS JUST
ANOTHER EXAMPLE, WE'RE ALMOST AT
DAWN OF THIS BUT I THINK THE
POSSIBILITIES ARE JUST ENDLESS
AS THIS WORK CONTINUES TO
ADVANCE.
SO KUDOS FOR THE COURAGE TO
TREAT THESE KIDS.
>>THANK YOU BOTH, I REALLY
APPRECIATE THE GREAT
PRESENTATIONS AND I THINK THIS
IS A PERFECT SEG WAY INTO THE
NEXT SEGMENT.
SO WE'RE GOING TO CONTINUE THE
PEDIATRICS THEME AND Dr.
GILMAN'S PRESENTATION AND
INTRODUCING THE POSSIBILITY OF
EXPANDING PEDIATRIC RESEARCH AT
THE CLINICAL CENTER SO THIS
TOPIC HAS BEEN EXPLORED
FREQUENTLY BIT CLINICAL CENTER
AND BY NIH LEADERSHIP OVER MANY
YEARS.
SO WE HAVE ONE ACTION ITEM TO
COME OUT OF THIS PRESENTATION AS
WELL.
JIM, I'LL TURN IT OVER TO YOU.
>>THANK YOU.
SO, WHEN WE -- SOME ADDITIONAL
RESOURCES WERE PROVIDED BY A
COMMERCIAL SPONSOR FOR THE
STUDY.
SO THAT GAVE US A CHANCE TO
DETERMINE WHAT WAS POSSIBLE.
IT BECAME PRETTY CLEAR THAT WE
COULDN'T DO THAT EVERY TIME SO
THE QUESTION WAS, WHETHER -- SO
THE QUESTION IS, AND THE
QUESTION FOR THE NEXT FEW MONTHS
IS, WHETHER WE CAN DO THAT ON A
MORE ROUTINE BASIS AND ESTABLISH
A PLATFORM WE TALKED ABOUT
EVERYTHING WE DID AND THE
CHILDREN THAT WERE TAKEN CARE
OF, WE WERE TAKING GOOD CARE OF
THEM.
AND WE HAD SOME OTHER
RECOMMENDATIONS IN REPORT
SEPARATE FROM THE RED TEAM THAT
WAS THE ENGAGEMENT REPORT
PROJECT THAT WAS DONE BY STU
SIMONSON AND THEN IN APRIL OF
2018 WE HAD A PRESENTATION BY
DEBBIE MREK AND CHRIS DA CATO
WHO WAS OUR NURSE MAJOR FOR THE
PEDIATRIC CARE AND ZENA WHO IS A
PEDIATRIC ANESTHESIOLOGIST AND
OVERSAW THE PHYSICIANS TAKING
CARE OF SICKER PATIENTS WHO WERE
CHILDREN.
AND YOU CAN SEE THE AREA THAT WE
FOCUSED ON THERE AND SO I THINK
EARLY ON, OUR PRINCIPLE FOCUS
WAS ON MAKING SURE THAT WE COULD
TAKE CARE OF THE CHILDREN THAT
WE ACTUALLY HAD AND SO, WE HAD
SOME LIMITATIONS AND I THINK
THEY'RE ON THE NEXT SLIDE.
SO FOR SEVERAL YEARS WE LIMITED
OUR CARE OF CHILDREN AND IN
PATIENTS TO CHILDREN WHO WERE
OLDER THAN THREE AND LARGER THAN
15 KYLE OWES AND WE WORKED A
LITTLE BIT AT THE MARGINS OF
THOSE NUMBERS AND BASICALLY,
THAT THOSE WERE THE LIMITS AND
WE CAN ONLY TAKE CARE OF
CHILDREN IF WE CAN DO IT SAFETY
AND WE HAVE THE PEDIATRIC
PLANNING REPORT AND WHICH LOCKS
AT THE TERM TERM REQUIREMENTS
FOR DOING MORE STUDIES OF THE
KINDS THAT SUNDAY SKI TRISH
TODr. TIFFT AND TRISH TODDHAVE.
WE LOOK BEYOND TO WHAT KINDS OF
STUDIES MIGHT BE NEEDED IN
CHILDREN BEYOND THE NEXT FEW
YEARS.
NEXT SLIDE.
SO THIS IS A DEPICTION THE WAY
WE THINK ABOUT THIS.
FIRST OF ALL, THERE'S NOT A
BLANKET THAT SAYS,
, WE'RE GOING TO
WE'RE GOING TO GOING TO DO A
PROTOCOL AND THE PROTOCOL
INVOLVES A DISEASE PROCESS AND
WE LOOK AT THE CHILD PORNOGRAPHY
WHO HAD THAT DISEASE PROCESS AND
TROY TO ANTICIPATE OR ASSESS
THEIR CARE NEEDS.
THAT PROCESS WOULD BE CALLED AN
ENDING AND YOU ASSESS THE RISK
FOR THE NOT ONLY FOR THE
DISEASE, THE TREATMENT, AND ANY
COMPLICATIONS THAT MIGHT OCCUR
AND THEN YOU TRY TO MITIGATE THE
RIDGES THAT ARE CURE AND YOU DO
THAT BY THE PROCESSES THAT TRISH
TODD DESCRIBED BY EDUCATION AND
TRAINING AND YOU DO IT BY TASK
ORGANIZATIONS OR SOMETIMES AS
ITS INDICATED IN THE BUBBLE ON
THE BOTTOM, YOU REACH OUT TO A
PARTNER TO PROVIDE SOME
CAPABILITIES THAT MAY BE ARE NOT
RESIDENT HERE AND SO THAT -- AND
THEN YOU GO BACK AND YOU LOCK AT
THE RISK EQUATION AND YOU MAKE
DECISION ABOUT WHETHER THIS IS
SOMETHING THAT CAN BE DONE OR
SOMETHING DONE HERE IN THE
CLINICAL CENTER.
CLINICAL CENTER NURSING
DEPARTMENT IS A HUGE PART OF
DOING THIS ASSESSMENT AND THEN
THE PEDIATRIC CARE COMMITTEE
CHAIRED BY DEBBIE MERK IS ALSO
HAS A MAJOR ROLE TO PLAY HERE.
TRISH DESCRIBED THE FAILURE
MODES AND EFFECTS ANALYSIS
EFFORT THAT WENT INTO THIS AND
IT IDENTIFIED SEVERAL MONTHS
WORTH OF WORK TO TAKE CARE OF
THESE TWO INFANTS.
WE USED DIDACTIC TRAINING AND
SIMULATION TRAINING IN A VARIETY
OF MOW BALA MODALITIES AND I DET
THE LAST CLINICAL CENTER BOARD
MEETING WHY WE THOUGHT THE
ADDITION OF SIMULATION
CAPABILITIES WAS IMPORTANT AND
THIS IS A CASE EXAMPLE AND
EXACTLY WHY WE THOUGHT THAT
BUILDING OUR SIMULATION
CAPABILITIES WAS IMPORTANT.
SO, THIS IS A SLIDE THAT YOU SAW
IN JULY AND AGAIN IT'S THE TWO
INFANTS WITH GM1 GANGLIOSIDOSIS
AND WE DID PARTNER WITH FOLKS AT
CHILDREN'S NATIONAL HOSPITAL AND
CINDY IS THE INVESTIGATOR AGAIN
SIX MONTHS OF PREPARATION WITH A
LARGE PORTION OF THE CLINICAL
CENTER INVOLVED AND EXTENSIVE
FAILURE MODES AND EFFECTS
ANALYSIS AND EXTENSIVE TRAINING,
DIDACTIC AND SIMULATION AND WE
DID EXPERIENCE ALMOST EVERY
CONTINGENCY IMAGINABLE BUT WE
HAD WAYS TO PREPARED FOR
VIRTUALLY EVERYTHING.
IT WAS CLEAR THAT THIS IS NOT
THE KIND OF EFFORT THAT WE CAN
EXERT EVERY TIME WE HAD A NEW
PROTOCOL.
SO WE NEEDED MORE CAPABILITY
THAT'S WERE ORGANIC TO THE
CLINICAL CENTER AND THAT'S WHAT
THE PEDIATRIC PLANNING GROUP
TOOK ON.
THE PEDIATRIC PLANNING GROUP WAS
CHAIRED BY BILL GALL HERE AT THE
CLINICAL CENTER AND IS A SENIOR
INVESTIGATOR IN THE NATIONAL
INSTITUTE FOR CHILD HEALTH AND
HUMAN DEVELOPMENT AND IT WAS THE
CHARTER WENT THROUGH SEVERAL
ITERATIONS AND IN THE MATERIALS
THAT WERE DISTRIBUTED IN THAT
PEDIATRIC PLANNING GROUP REPORT
IS A COPY OF THE ORIGINAL
CHARTER IT WAS APPROVED BY THE
MEDICAL EXECUTIVE COMMITTEE AND
THE CLINICAL CENTER BOARD AND
THE PEDIATRIC PLANNING GROUP WAS
VERY BUSY AND THIS WAS PRETTY
CLEAR THAT THE PROVIDERS WHO
TOOK CARE OF CHILDREN ON THIS
CAMPUS WERE VERY ENGAGE IN
TRYING PUT TOGETHER A PERHAPS
THAT WAS BOTH -- THAT MET THE
MARK IN TERMS OF BEING ABLE TO
TAKE CARE OF CHILDREN SAFELY BUT
ALSO WAS FEASIBLE AND WAS
ACTUALLY SOMETHING THAT WE COULD
DO HERE AT THE NIH CLINICAL
CENTER.
THEY DIVIDED INTO THREE MAJOR
GROUPS, PEDIATRIC EMERGENCY
MANAGEMENT, PEDIATRIC CRITICAL
CARE AND PEDIATRIC SUB SPECIALTY
COVERAGE AND THAT REPORT WAS
PRESENTED TO THE CLINICAL CENTER
GOVERNING BOARD MADE UP OF
INSTITUTE DIRECTORS AND IN
FEBRUARY OF 2022 AND THE
CLINICAL CENTER GOVERNING BOARD
REQUESTED AN EXTERNAL REVIEW,
SINCE WE ARE NOT ACCUSTOMED TO
TAKING CARE OF A SMALL CHILDREN
AND YOUNG CHILDREN, TO HAVE IT
REVIEWED BY A GROUP OF EXTERNAL
PEDIATRIC THOUGHT LEADERS WAS
RECOMMENDED.
AND THIS IS A COPY OF THE REPORT
AND AGAIN, YOU HAVE AN
ELECTRONIC COPY AND WE ARE HAPPY
TO SEND A HARD COPY TO ANY OF
THE BOARD MEMBERS AND WHO WANT
TO HAVE A HARD COP E COPY.
BY HAVING A PARTNER WHO HAD A
FULL MENU OF PEDIATRIC
SPECIALISTS AND SUB SPECIALISTS,
AND WITH HAVING A ROBUST
CONTRACTUAL ARRANGEMENT AND THE
PROVISION OF A FEW ADDITIONAL
VER IS THIS IS THE HOUSE,
PRINCIPALLY A SMALL INHOUSE
PEDIATRIC ICU, WE COULD REPEAT
THE EXPERIENCE THAT WE HAD WITH
GM1 GANGLIOSIDOSIS FOR A NUMBER
OF DISEASES.
AND THE ADDITIONAL COST ON TOP
OF AND ALREADY SUBSTANTIAL
BUDGET WOULD NOT BE THAT GREAT
SO THAT IS THE BOTTOM LINE OF
THE REPORT.
SO THE QUESTIONS TO BE ANSWERED,
CAN THE NIH CLINICAL TRIALS
PROVIDE MORE FOR IN CAL TRIALS
OF DISEASE OF INFANCY AND
CHILDHOOD.
ESPECIALLY AS JOHN GALLIN
DESCRIBED THE BUSINESS MODEL FOR
THE NIH CLINICAL CENTER WHICH
IS, WE DON'T HAVE THE CAPABILITY
OF SENDING A BILL SO, IN THIS
KIND OF BUSINESS MODEL, IS THAT
REALLY AN IMPORTANT ADDITION TO
THE LANDSCAPE AND EARLY
CHILDHOOD DISEASES AND SO THAT'S
THE QUESTION THAT WE'RE PUTTING
TO THE EXTERNAL WORKING GROUP.
SO, Dr. DAVASKR ATTENDED THE
LAST CLINICAL RESEARCH MEETING
AND WHEN SHE IS GOING FROM HOME
TO WORK WHICH IS A SHORT DRIVE,
SHE'S BEEN HEAVILY ENGAGE IN
THIS MEETING.
WE -- I ASK Dr. DEVASKAR TO DO
THIS, I QUERY DIANA AND NINA
SHORE WHO HAS DR. TABAK
INDICATED, IS THE ACTING DEPUTY
DIRECTOR FOR IN TRA MURAL INTRAT
THE NIH AND WAS THE CHAIR OF
PEDIATRICS AT THE UNIVERSITY OF
ROCHESTER AND RAN THE CHILDREN'S
HOSPITAL AT UNIVERSITY OF
ROCHESTER BEFORE SHE CAME TO THE
NIH AND I ASKED THEM EACH FOR A
LIST OF PEOPLE WHO THEY THOUGHT
MIGHT BE ABLE TO CONTRIBUTE TO
THIS GROUP AND Dr. DEVASKAR'S
NAME WAS ON BOTH LIST SO THAT'S
THE WAY SHE WAS CHOSEN AND I
REACHED OUT TO HER AND SHE WAS
WILLING TO DO THIS AND THEN I
ASKED HER TO HELP US IDENTIFY
PEDIATRIC THOUGHT LEADERS FROM
AROUND THE COUNTRY WHO MIGHT BE
WILLING TO PARTICIPATE AND SHE
PROVIDED THIS LIST AND I'M NOT
GOING TO READ TO YOU ALL OF THE
NAMES AND ALL OF THE TITLES FOR
THE GROUP, EACH ONE OF THEM HAS
ANNA POINTMENT AS PHYSICIAN EX
CHIEF OR IS RESPONSIBLE FOR
PROVIDING CARE FOR CHILDREN AND
THAT'S I THINK THE MOST
IMPORTANT THING.
THEY DO COME FROM A VARIETY OF
DIFFERENT INSTITUTIONS AND ONE
OF THE REASONS WHY I WAS VERY
HAPPY WITH Dr. DEVASKAR'S
AGREEMENT TO BE THE CHAIR, SHE
POINTED OUT TO SOME OF THESE
DISTINGUISH PEDIATRICIANS WORK
IN STAND-ALONE PEDIATRIC
HOSPITALS THAT ARE QUITE LARGE
AND OTHERS SERVE THESE ROLES IN
PEDIATRIC HOSPITALS THAT ARE
EMBEDDED IN A LARGER ACADEMIC
MEDICAL UNIVERSITY AND HOSPITALS
SO THEY'RE NOT ALL STAND ALONE
PEDIATRIC HOSPITALS WHICH IS
REALLY NOT WHAT WE CAN PROVIDE
HERE.
OUR PEDIATRIC EFFORTS WILL BE IN
THE PEDIATRIC HOSPITAL WITHIN
THE HOSPITAL.
I THINK THAT'S WHAT I'M TRYING
TO SAY.
BY THE WAY, NONE OF THEM ARE
FROM THE LOCAL NATIONAL CAP TOP
AREA BECAUSE IT WOULD BRING IN A
CONFLICT OF INTEREST AND THERE
ARE PROBABLY FOUR OR FIVE
POTENTIAL PARTNERS IN THE
NATIONAL CAPITOL REGION AND FOR
THEM TO BE ACTIVELY
PARTICIPATING IN THIS EFFORT, I
THINK IT WOULD BE VIEWED WITH
SKEPTICISM SINCE WE HOPE IT WILL
LEAD TO AN EFFORT THAT REQUIRES
A ROBUST PARTNER.
SO, WE HAVE -- WE'VE ASKED Dr.
DEVASKAR TO CHAIR THIS GROUP.
IT WILL BE MOSTLY DONE THROUGH
VIRTUAL MEETINGS.
I'VE CONNECTED HER WITH STAFF
INSIDE THE CLINICAL CENTER THAT
WILL PROVIDE ANY ON THE GROUND
SUPPORT IN TERMS OF DATA OR
INFORMATION OR CAPABILITIES AND
DOCUMENTS THAT WILL BE RELEVANT
AND THEY WILL LOCK AT THE REPORT
FROM BILL GALL'S GROUP ALSO
KNOWN AS THE PEDIATRIC PLANNING
GROUP AND IF THEY'RE READY IN
FEBRUARY THE FEBRUARY MEETING OF
THE CLINICAL CENTER RESEARCH
HOSPITAL BOARD THEY WILL REPORT
BACK AND THEY MAY SAY THIS IS A
GO AHEAD START AND YOU NEED TO
DO SOME MORE WORK BEFORE YOU ARE
READY TO THINK ABOUT SOMETHING
LIKE THIS AND THEY COULD EVEN
SAY, WE DON'T THINK YOU SHOULD
GO THERE AND IT WILL BE A FULL
AND OPEN REPORT AND IN A MEETING
CONNECTED WITH A FULLY VETTED
BOARD OF CLINICAL CENTER
RESEARCH OF NIH CLINICAL CENTER
RESEARCH AND THOSE
RECOMMENDATIONS WILL GO TO ME.
A COPY OF THE DRAFT CHARTER WAS
CIRCULATED WITH THE OTHER
MATERIALS FOR THIS MEETING.
THAT CHARTER WAS ALSO VETTED
WITH Dr. SHORE AND Dr.
BIANCHI AND A NUMBER OF SENIOR
PEDIATRICIANS WITHIN THE
CLINICAL CENTER AND IT WAS ALSO
DISCUSSED LAST EVENING AT THE
CLINICAL CENTER GOVERNING BOARD
AND THAT NATURALLY THAT'S
IMPORTANT BECAUSE ANY ADDITIONAL
COSTS THAT COME OUT OF THIS
EFFORT, OUR FIRST PRESENTED TO
THE CLINICAL CENTER GOVERNING
BOARD.
THERE WERE NO ADDITIONS OR
CORRECTIONS TO MAKE TO THE DRAFT
CHARTER.
SO WITH THAT, Dr. COOTS, WHAT
I WOULD HOPE IS THAT THE
CLINICAL CENTER RESEARCH
HOSPITAL BOARD WOULD CONSIDER
APPROVAL OF THE DRAFT CHARTER
FOR Dr. DEVASKAR.
>>THANK YOU, VERY MUCH, Dr.
GILMAN.
I'LL OPEN THE FLOOR FOR ANY
QUESTIONS.
BY ANY OF THE MEMBERS OF BOARD
OR ANY ADDITIONAL DISCUSSION.
BEFORE WE MOVE TO THE ACTION
ITEM.
OK.
HEARING NONE, IT MUST BE CLEAR.
SO, THEN THE ACTION ITEM SIMPLY
IS TO FOR THE BOARD TO GIVE
CONCURRENCE THEN TO THE CHARTER
AND JIM, WHAT EXACTLY IS THE
TIMELINE BECAUSE IT SAID TO BE
DETERMINED BY US, BIT BOARD.
SO WHAT ESTIMATED IS THAT THE
TIME BETWEEN NOW AND FEBRUARY IS
ENOUGH TIME FOR THE GROUP TO
PROVIDE A REPORT.
BUT IF THEY SAY IN FEBRUARY, WE
NODE MORE TIME, I HOPE THAT THE
CLINICAL CENTER OF RESEARCH
HOSPITAL BOARD WILL GIVE THEM
MORE TIME.
>>OK.
>>SO THEN WHAT WE NEED IS A
FORMAL VOTE BASICALLY TO APPROVE
THE CHARTER FOR THE GROUP WITH A
REPORT BACK ON FEBRUARY 17th
OR IF THAT DEADLINE CANNOT BE
MET TO STRETCH THE DEADLINE TO
THE NEXT MEETING.
CAN I GET THAT IN THE FORM OF A
MOTION?
>>I MOVE APPROVAL OF THE
CHARTER.
>>THANK YOU.
IT'S BEEN MOVED AND SECONDS.
ALL IN FAVOR.
SIGNIFY BY SAYING AYE.
AYE.
ANY OPPOSED?
AND ANYONE ABSTAINING?
IF NOT, THANK YOU ALL VERY MUCH.
THE MOTION CARRIES.
YOU GOT THE MARCHING ORDERS.
>>SO, I WOULD LIKE TO SEE IF
Dr. DEVASKAR HAS SOMETHING SHE
WOULD LIKE TO SAY.
>>THANK YOU SO MUCH FOR THE
UNANIMOUS VOTE.
I KNOW OUR CHARTER IS PRETTY
CLEAR AND I'M PRETTY CONFIDENT
THAT WE PUT TOGETHER A VERY GOOD
GROUP, THE ONLY THING THAT I
THINK Dr. GILMAN REALLY
OUTLINED IT BEAUTIFULLY, THE
ONLY THING I WOULD WANT TO ADD
TO THAT IS THE INDIVIDUALS ON
THE COMMITTEE IN ADDITION TO
BEING IN CHARGE OF HOSPITALS,
ARE ALSO FROM DIFFERING
SPECIALITIES AND HAVE EXPERIENCE
WITH CONDUCTING PHASE 1 TO PHASE
2 CLINICAL TIMES THEM SPECIAL
AND THEIR SPECIALITY INCLUDING
GONE THERAPY, CELL THERAPEUTICS
ET CETERA WHICH IS WHAT WE'LL
SEE MORE DURING INFANCY.
THAT'S THE ONLY THING I WOULD
LIKE TO ADD.
>>THANK YOU.
>>THEN I THINK WE'RE AT THE
POINT WHERE AHEAD OF SCHEDULE
BUT THE POINT FOR ANY OPEN
DISCUSSION ON THE FLOOR AND ANY
OF THE PREVIOUS TOPICS THAT WERE
TALKED ABOUT TODAY OR ANY OTHER
ITEMS TO BE BROUGHT BEFORE THE
BOARD FOR DISCUSSION?
ALL RIGHT OF HEARING NONE, THE
OLD SAYING WAS ALWAYS, YOU KNOW,
TRAIN TO STANDARD NOT TO TIME.
SO I THINK WE HAVE MET THE
STANDARD FOR THE DAY.
SO THEN, LET ME BRING US TO
CLOSING.
WE HAVE FUTURE MEETING DATES
THAT ARE ALREADY SET FEBRUARY
THE 17th OF '23, JUNE THE
16th AND THEN OCTOBER THE
20th.
SHOULD ALREADY BE ON THE BOOKS.
WITH THE CHARTER BEING APPROVED,
GOOD LUCK TO OUR PEDIATRICS
WORKING GROUP AND I MEAN I'M
EXCITED ABOUT THIS AND THIS IS
GREAT.
YOU GUYS ARE NOW IN FLIGHT SO I
LOOK FORWARD TO SEEING WHAT THE
RESULTS ARE WHEN IT COMES BACK.
I HAVE TO TELL YOU, IT'S BEEN A
REAL PLEASURE TO LAUNCH MY
TENURE AS THE CHAIR TODAY AND I
AM SO STOKED AND EXCITED ABOUT
ALL OF THIS AND I COULDN'T HAVE
ASKED FOR A BETTER MEETING WITH
THAT HISTORICAL PRESENTATION BY
Dr. GALLIN, I MEAN, FOR ALL OF
US, IT JUST, TO HEAR THE HISTORY
AND TO THINK ABOUT ALL THE GREAT
THINGS THAT HAVE COME OUT OF NIH
AND I WAS THINKING YEAH THAT IS
ON MY BOARD AND THAT WAS ON MY
BOARDS AND THAT WAS ON MY
BOARDS.
TO SEE WHERE ALL OF THOSE THINGS
ORIGINATED IS REALLY GREAT TOO
AND PEER PERIODICALLY WE NEED O
GROUND OURSELVES AND ALL OF THE
GREAT WORK THAT'S GONE ON IN
THIS INSTITUTION AND
INSTITUTIONS LIKE IT SUPPORTED
BY THE FEDERAL GOVERNMENT.
THANK YOU ALL VERY MUCH FOR THAT
AND WHAT A TREMENDOUSLY GREAT
MEETING.
IF THERE'S NO FURTHER BUSINESS,
AT THE LAST MINUTE, ONE MORE
CHANCE.
GOING ONCE, TWICE, THEN, HAVING
RUN THE BUSINESS OF THE AGENDA,
I WOULD LIKE TO DECLARE THIS
MEETING ADJOURNED.
AT THIS ALL VERY MUCH.
THANK YOU, EVERYONE.