WELCOME TO THE 183rd MEETING
OF THE NICHD ADVISORY COUNCIL.
JUNE COUNCEL MEETING WAS A GREAT
SUCCESS IN OUR RETURN TO
IN-PERSON MEETINGS AND IT WAS
WONDERFUL TO SEE YOU ALL THEN
AND AGAIN TODAY IN PERSON.
LOOK AT THE BACK OF THE ROOM!
IT'S LIKE PRE-PANDEMIC TIMES.
SO WELCOME, EVERYBODY.
TODAY'S MEETING IS OPEN TO THE
PLUCK AND IT'S BROADCAST ON THE
NIH VIDEO NETWORK.
TOMORROW WE WILL HOLD OUR CLOSED
SESSION.
I DO APPRECIATE EVERYONE WHO IS
JOINING US IN PERSON TODAY AND
WHO ARE WATCHING US VIA THE
VIDEOCAST.
WITH US FOR THE FIRST TIME AND
COULD YOU PLEASE RAISE YOUR HAND
SO THOSE IN THE BACK CAN SEE THE
NAME CARDS AND WILL KNOW WHO YOU
ARE.
DR. ANNA AZAR, FROM BROWN
UNIVERSITY.
DR. CYNTHIA GAVI FROM THE
UNIVERSITY OF CALIFORNIA SAN
DIEGO.
I DON'T SEE HER HER.
SHE IS ON ZOOM?
CYNTHIA WE ARE WELCOMING YOU VIA
ZOOM.
DR. MIMI JABS WHO I ALSO DON'T
SEE FROM THE ICON SCHOOL OF
MEDICINE AT MOUNT SINAI, ALSO ON
ZOOM.
AND DR.-- FROM BAYLOR COLLEGE OF
MEDICINE.
I'M NOW GOING TO CALL ON ANNA
FIRST TO BRIEFLY INTRODUCE
YOURSELF AND USE THE MICROPHONE,
PLEASE.
>>I'M ANNA, A PROFESSOR OF
ECONOMICS.
>>I DON'T KNOW IF THE
MICROPHONE IS ON.
DO YOU SEE A GREEN LIGHT ON THE
BASE?
>>I'M ANNA A ZER, A PROFESSOR
OF ECONOMICS AT BROWN
UNIVERSITY.
THE FOCUS OF MY RESEARCH IS THE
INTERGENERATIONAL TRANSMISSION
OF POVERTY IN THE U.S.
I DO A LOT OF WORK ON HEALTH BUT
IN OTHER SPACES AS WELL,
EDUCATION IN PARTICULAR.
I THINK -- IS THAT ENOUGH?
>>THAT'S GREAT.
THANK YOU.
AND NOW -- WE'LL GO TO --
>>I'M INIA, PROFESSOR IN
OBSTETRICS AND GYNECOLOGY,
MOLECULAR AND HUMAN GENETICS AT
BAYLOR.
AND I'M ALSO PART OF THE
CHILDREN'S HOSPITAL.
MY RESEARCH IS ON PRENATAL AND
REPRODUCTIVE GENETICS AND
EPIGENETICS AND ALSO I DO A LOT
OF TRANSLATIONAL RESEARCH ON
BRINGING NEW TECHNOLOGIES TO
PRENATAL GENETIC DIAGNOSIS LIKE
GENOME SEQUENCING.
AND I'M INVOLVED WITH A TEACHER
TO TEACH TRANSLATIONAL RESEARCH
TO GRAD STUDENTS, PH.D. GRAD
STUDENTS.
>>THANK YOU.
AND WE HAVE DR. JABS ON ZOOM.
CAN WE SHOW HER?
>>HI, EVERYBODY.
MY OFFICIAL NAME ISETH LIN JABS.
I'M A PROFESSOR OF GENETICS AND
GENOMIC SCIENCES.
AND ALSO PROFESSOR OF PEDIATRICS
AND A PROFESSOR OF CELL AND
DEVELOPMENTAL AND REGENERATIVE
BIOLOGY AT THE ICON SCHOOL OF
MEDICINE AT MOUNT SINAI,
NEW YORK CITY.
MY WORK HAS BEEN FOCUSED ON THE
DEVELOPMENTAL GENETICS OF THE
CRANIOFACIAL SYSTEM AND I HAVE
BEEN ALSO INTIMATELY INVOLVED IN
TRAINING THAT INCORPORATES
SYSTEMS BIOLOGY WITH
DEVELOPMENTAL BIOLOGY AND BIRTH
DEFECTS.
AND I'VE HAD A LONGSTANDING
INTEREST IN RARE DISORDERS.
TO COMPLICATE THINGS A LITTLE
BIT MORE, IN 11 DAYS, I WILL BE
MOVING TO THE MAYO CLINIC TO BE
CHAIR OF THE DEPARTMENT OF
CLINICAL GENOMICS.
>>CONGRATULATIONS ON YOUR NEW
APPOINTMENT.
AND I THINK IT WILL BALANCE THE
MIDWESTERN COMPONENT OF OUR
ADVISORY COUNCIL.
WITH THE HYBRID MEETING FORMAT,
PLEASE REMEMBER TO UNMUTE
YOURSELF.
LIKE YOU SHOULD BE RED UNLESS
YOU'RE SPEAKING, AT THE BASE OF
THE MICROPHONE.
AND PLEASE STATE YOUR NAME SO
THE TRANSCRIBER AND VIDEOCAST
OBSERVERS WILL KNOW WHO IS
SPEAKING.
AFTER YOU SPEAK, PLEASE BE SURE
TO MUTE YOUR MICROPHONE TO
PREVENT ANY OVERLAP.
NOW I WILL TURN THE MEETING OVER
TO REBEKAH RASOOLY, OUR DIRECTOR
OF THE DIVISION OF EXTRAMURAL
ACTIVITIES.
>>THANK YOU AND GOOD AFTERNOON.
ON THE COUNCIL MEMBER WEBSITE,
YOU ALL SHOULD HAVE AGREED TO
AND SIGNED THE CONFIDENTIALITY
AND NON DISCLOSURE RULES FOR
SPECIAL GOVERNMENT EMPLOYEES
BEFORE EVALUATING ANY NIH GRANT
APPLICATIONS.
ALSO, PLEASE REMEMBER THAT YOU
CAN NOT SERVE ON ANY NIH
PEER-REVIEWED PANEL WHILE
SERVING AS A COUNCIL MEMBER.
AND YOU CAN NOT PROVIDE
SECOND-LEVEL REVIEW OF COUNCIL
FOR ANY APPLICATION IN WHICH YOU
PARTICIPATED IN THE FIRST LEVEL
OF PEER REVIEW.
IT IS NIH'S POLICY THAT AN
INDIVIDUAL CANNOT SERVE ON BOTH
THE FIRST AND SECOND LEVELS OF
PEER REVIEW.
IN ADDITION, I WANT TO BRING TO
YOUR ATTENTION THAT DURING
CLOSED SESSION DELIBERATIONS
TOMORROW, YOU SHOULD PLEASE MAKE
SURE TO SHUT OFF ANY CLOUD-BASED
VOICE SERVICES SUCH AS SMART
SPEAKERS, ALEXA AND SO ON, AS
THESE DEVICES MY BE ABLE TO
CAPTURE CONFIDENTIAL
INFORMATION.
I NOW WANT TO ASK FOR ALL OF YOU
TO LOOK AT THE MINUTES FOR THE
JUNE 6-7 MEETING, WHICH WERE
POSTED ON THE COUNCIL MEMBER
WEBSITE.
AND THEY WILL BE POSTED ON OUR
PUBLIC COUNCEL SITE ONCE YOU
APPROVE THEM.
SO WE'RE GOING TO ASK FOR A
MOTION TO APPROVE THOSE MINUTES
AND FOR A SECOND AND THEN TO
VOTE.
AND FOR THOSE OF YOU ON ZOOM --
SO WE'LL JUST TAKE A SHOW OF
HANDS FOR VOTING.
MAY I HAVE A MOTION TO APPROVE
THE JUNE MINUTES?
>>SHARON MOVE TO APPROVE.
>>SECOND?
>>CATHERINE LANG, SECOND.
>>ALL IN FAVOR?
VERY GOOD.
THANK YOU SO MUCH.
SO THE RESULTS ARE THE MINUTES
ARE APPROVED AND NOW THE LAST
THING BEFORE I TURN THIS BACK TO
DR. BIANCHI IS TO REVIEW THE
UPCOMING MEETING DATES.
SO, IN JANUARY -- AND THIS WILL
BE TRUE, I THINK, FOR ALL OUR
WINTER MEETINGS.
ON JANUARY 22 AND 23, WE ARE
GOING TO BE IN A VIRTUAL
MEETING.
AND THEN WE RETURN TO THE NIH
CAMPUS IN JUNE FOR A MEETING ON
JUNE 3 AND 4 IN BUILDING 31.
AND THEN BACK HERE AGAIN NEXT
SEPTEMBER.
SO PLEASE REVIEW THESE DATES AND
MAKE SURE THAT THEY ARE ON YOUR
CALENDAR AND WE'LL LOOK FORWARD
TO SEEING YOU AT THESE UPCOMING
COUNCEL MEETINGS.
DR. BIANCHI?
>>THANK YOU, REBEKAH.
CAN THIS SCREEN BE TURNED OFF?
OR I'M GOING TO HAVE TO MAYBE --
NEXT SLIDE, PLEASE.
WHO IS RUNNING THE SLIDES?
SO, IT'S MY PLEASURE TO GIVE YOU
THE SEPTEMBER COUNCIL REPORT.
THANK YOU.
AND WE'RE GOING TO START -- I
KNOW EVERYONE IS ALWAYS VERY
CONCERNED ABOUT MONEY.
THANK YOU VERY MUCH.
WE'LL START WITH WHAT WE KNOW,
WHICH IS NOT A WHOLE LOT BUT FOR
FISCAL YEAR 24, AND THEN BECAUSE
IT'S ALMOST 2024 AND IT WILL
HAVE BEEN FIVE YEARS SINCE WE
FIRST RELEASED THE DRAFT OF OUR
2019 STRATEGIC PLAN, WE'LL START
TO TALK ABOUT OUR NEXT STRATEGIC
PLAN, WHICH IS REQUIRED
ACCORDING TO THE 21ST CENTURY
CURES ACT, EVERY FIVE YEARS.
SO THAT PROCESS IS ALREADY
ONGOING AND WE THANK EVERYONE
WHO IS PARTICIPATING IN THAT.
WE THOUGHT IT WOULD BE A GOD
TIME TO START TO REVIEW WHAT
KIND OF PROGRESS WE HAVE MADE
AND IN PARTICULAR, OUR
ASPIRATIONAL GOALS, WHICH THOSE
OF YOU WHO HAVE SEEN THE
STRATEGIC PLAN, I THINK IT'S
INCLUDED PERHAPS WITH YOUR
DOCUMENTS, BUT MAYBE NOT.
IT'S THE COVER THAT'S THE SAME.
IT'S AVAILABLE ON LINE AND WE'LL
SEND IT TO YOU.
BUT, THE ASPIRATIONAL GOALS ARE
IN THE BACK OF THE STRATEGIC
PLAN AND THEY REALLY REPRESENTED
EXACTLY THAT.
IF WE HAD UNLIMITED FUNDS, THIS
IS WHAT WE WOULD LIKE TO
ACHIEVE.
WE HAD TENAC OPERATIONAL GOALS.
WE'RE GOING TO GIVE YOU AN
UPDATEOY FOUR OF THEM TODAY.
THEN I THOUGHT I WOULD GIVE YOU
AN UPDATE ON THE NIH'S CLINICAL
CENTER PEDIATRIC RESEARCH
STRATEGIC PLAN, AND THEN THE
IMPROVED PROGRAM, IMPLEMENTING
MATERNAL HEALTH AND PREGNANCY
OUTCOMES VISION FOR EVERYONE,
AND THEN WE HAVE QUITE A LOT OF
STAFF UPDATES.
SO WE WILL TALK ABOUT THAT.
DO I HAVE CONTROL OF THE SLIDES
OR DOES SOMEBODY ELSE?
THANK YOU.
NEXT SLIDE, PLEASE.
SO AS YOU PROBABLY KNOW, TODAY
IS SEPTEMBER 6 AND THERE IS
STILL NO BUDGET FOR FISCAL YEAR
24, WHICH BEGINS OCTOBER 1, IN
LESS THAN A MONTH.
THE FISCAL YEAR 24 HOUSE LABOR
HHS APPROPRIATIONS BILL GAVE NIH
A 43 BILLION DOLLAR TOTAL
BUDGET, WHICH WOULD BE A
DECREASE OF 3.8 BILLION FROM THE
CURRENT FISCAL YEAR.
THE NICHD APPROPRIATION LEVEL
WOULD BE 1.75 BILLION, WHICH IS
FLAT.
AND FLAT IS WHAT WE'RE AIMING
FOR.
IF WE GOT AN INCREASE IT WOULD
BE A MIRACLE BUT WE ARE JUST
HOPING WE DON'T GET A DECREASE.
FISCAL YEAR 24, SENATE LABOR HHS
APPROPRIATIONS BILL GAVE A MORE
GENEROUS APPROPRIATION TO NIH,
49.2 BILLION, WHICH WAS A SLIGHT
INCREASE.
AND NICHD DID GET AN INCREASE OF
10 MILLION DOLLARS FOR THE
IMPROVED PROGRAM, WHICH YOU'LL
BE HEARING ABOUT IN A LITTLE
BIT.
THE NEXT STEPS, THE HOUSE AND
SENATE ARE BACK AT WORK THIS
WEEK AND THEY HAVE TO RECONCILE
THEIR DIFFERENCES IN THE FILE
APPROPRIATIONS LEGISLATION.
AT THIS POINT, IF THEY DON'T
RESOLVE THINGS, WE COULD
POTENTIALLY FACE SOME SEVERE
CONSEQUENCES, BUT AT A MINIMUM F
THEY DON'T RESOLVE IT, THERE IS
WHAT IS CALLED A CONTINUING
RESOLUTION, WHICH MUST BE PASSED
BY SEPTEMBER 30 TO KEEP THE
GOVERNMENT IN OPERATION.
NEXT SLIDE.
SO, WE'RE STARTING TO THINK THAT
OUR 2025 STRATEGIC PLAN, THE ONE
THAT WE RELEASED, HERE IS THE
COVER AND WE'LL GET YOU THE PDF
OF IT.
THAT PREVIOUS ONE WAS RELEASED
IN THE FALL OF 2019.
I PRESENTED IT TO THE ADVISORY
COUNCIL AT THAT TIME.
AND IT'S NOW JUST FIVE YEARS
LATER.
THE KEY FOCUS AREAS WERE
RESEARCH, STEWARDSHIP,
MANAGEMENT AND ACCOUNTABILITY.
AND NICHD HAS BEEN DOCUMENTING
AND TRACKING ACTIVITIES AND
ACHIEVEMENTS TOWARDS OUR CURRENT
OBJECTIVES.
WE'RE STARTING TO REFRESH THE
STRATEGIC PLAN OVER THE NEXT
YEAR AND THIS WILL BE INFORMED
BY DATA FALL SIS OF OUR
ACHIEVEMENTS ON CURRENT
ACTIVITIES AND ACCOMPLISHMENTS.
MANY OF THESE YOU HAVE BEEN
UPDATED IN THE COUNCIL MEETINGS.
WE'RE GOING TO SEE THE NICHD
STAFF'S INPUT ON THE SCIENTIFIC
OPPORTUNITIES AND THEN SOLICIT
EXTERNAL FEEDBACK FROM ALL OF
YOU, FROM THE SCIENTIFIC AND
ADVOCACY COMMITMENTS AND THE
PUBLIC.
SO WE THOUGHT TODAY, WHAT WE
COULD DO IS LOOK AT THE
ASPIRATIONAL GOALS AND GIVE AN
UPDATE ON FOUR OF THE 10.
NEXT SLIDE, PLEASE.
SO JUST TO REFRESH WHAT WAS THE
EXACT LANGUAGE IN THE STRATEGIC
PLAN FOR THOSE FOUR ASPIRATIONAL
GOALS.
THE FIRST ONE WAS ON
ENDOMETRIOSIS AND THE TEXT SAID,
WE PLAN TO ACCELERATE EFFORTS TO
DEFINITELY -- DEFINITIVELY
DIAGNOSE, PREVENT AND TREAT
ENDOMETRIOSIS.
A DISEASE THAT EFFECTS AN
ESTIMATED 10% OF WOMEN IN THE
UNITED STATES AND RESULTS IN
CHRONIC PAIN, INFERTILITY AND A
HIGHER RISK OF SOME CANCERS.
THE NEXT ONE IS TO ADVANCE THE
ABILITY TO REGENERATE HUMAN
LIMBS BY USING EMERGING
TECHNOLOGIES TO ACTIVATE THE
BODY'S OWN GROWTH PATHWAYS AND
PROCESSES.
THE THIRD ONE IS TO ENHANCE THE
SURVIVAL AND HEALTHY DEVELOPMENT
OF PRETERM INFANTS BY EXPLORING
THE ROLE OF ENVIRONMENTAL
FACTORS, SUCH AS FEEDING METHODS
AND NUTRITIONAL SUPPORTS, HUMAN
TOUCH AND MUSIC AND LIGHTING.
AND THE LAST ONE THAT WE'RE
GOING TO DISCUSS TODAY IS TO
FACILITATE THE APPLICATION OF
PRECISION MEDICINE APPROACHES IN
CHILDREN BY CAPITALIZING ON
ADVANCES IN GENOMICS AND
UPDATING NORMATIVE DATA ON THE
GROWTH AND DEVELOPMENT OF A
DIVERSE POPULATION OF CHILDREN,
INCLUDING THOSE WITH
INTELLECTUAL, DEVELOPMENTAL AND
PHYSICAL DISABILITIES.
SO LET'S START WITH
ENDOMETRIOSIS.
AS WE SAID, 1-10 WOMEN HAVE IT.
IT'S A CONDITION THAT IS
ASSOCIATED WITH A LONG DELAY IN
DIAGNOSIS.
IT HAS SEVERE SYMPTOMS.
AT THE TIME OF THE ASPIRATIONAL
GOAL, THERE WERE ZERO PROVEN
NON-INVASIVE DIAGNOSTIC TESTS
WIDELY AVAILABLE.
YOU CAN SEE HERE, JUST TO ORIENT
YOU TO THE GRAPHS THAT WILL
APPEAR IN THE MIDDLE OF THESE
FOUR SLIDES.
ON THE BOTTOM IN BLACK NUMBERS
ARE THE MILLIONS OF DOLLARS THAT
IS SPENT ON THIS.
SO THERE HAS BEEN SIGNIFICANT
PROGRESS.
FOR EXAMPLE, WE HAVE GONE FROM
14.41 MILLION DOLLARS TO 27.33
MILLION DOLLARS, THE LAST
COMPLETED FISCAL YEAR WAS 2022.
WE'LL HAVE UPDATED INFORMATION
IN A FEW MONTHS.
THE ORANGE LINE REPRESENTS THE
NUMBER OF NICHD PROJECTS.
AND YOU CAN SEE THAT OUR
GYNECOLOGICAL HEALTH AND SEIZES
BRANCH HAS BEEN VERY BUSY IN
SOLICITING AND FUNDING GRANTS.
SO THOSE HAVE GONE FROM 32 TO 52
AND AT THE BOTTOM OF THE GRAPH
INDICATES THE FUNDING
OPPORTUNITIES THAT ARE INCLUDED
IN THESE NUMBERS.
AND THE FINDINGS INCLUDE
IDENTIFYING GENETIC FACTORS THAT
UNDERLIE CO-MORBIDITY USING THE
PUBLICATION THAT IS ARE
ASSOCIATED WITH THESE PARTICULAR
GRANTS.
AND WE WILL MAKE THE SLIDES
AVAILABLE TO EVERYONE.
THERE ARE DRUGS THAT HAVE BEEN
IDENTIFIED THAT IMPROVE SYMPTOMS
TO THE EXTENT WE CAN TELL, THE
PROGRESSION OF THE END MEETIOSIS
AND IMPROVED FERTILITY IN MICE.
THERE ARE ALSO NON SURGICAL
TREATMENTS THAT CAN REMOVE THE
LESIONS AND THE SURGERY FOR END
MEETIOSIS IS EXTENSIVE.
SO ANYTHING THAT COULD REDUCE
THE MULTIPLE HOURS THAT ARE
NEEDED TO TREAT ENDOMETRIOSIS IN
WOMEN WHO HAVE SEIZ SYMPTOMS
WOULD BE EXTREMELY USEFUL.
AND THEN BROAD AP1 INHIBITORS
HAVE BEEN STUDIED AS A POTENTIAL
TREATMENT.
THERE ARE A NUMBER OF OTHER
ACTIVITIES, FOR EXAMPLE WE WILL
BE HOSTING A SHOWING OF BELOW
THE BELT, WHICH IS A DOCUMENTARY
THAT HAS BEEN STREAMING ON PBS
THAT CHRONICLES THE JOURNEY OF
SEVERAL PEOPLE WHO ARE AFFECTED
OR HAVE BEEN AFFECTED WITH
ENDOMETRIOSIS AND ALSO THE
PERSPECTIVE OF A SURGEON WHO
EXCLUSIVELY TREATS WOMEN WITH
ENDOMETRIOSIS.
AND IS FREQUENTLY IN SURGERIES
FOR 8 OR 9 HOURS.
NEXT SLIDE.
LIMB REGENERATION.
2.1 MILLION PEOPLE IN THE UNITED
STATES WITH LIMB LOSS.
THOSE PEOPLE ARE AFFECTED WITH
PAIN AND LONG TERM DISABILITIES.
THERE ARE COSTS INVOLVED SO ON
AVERAGE THERE IS A LIFETIME
DIRECT MEDICAL COST OF 878,000
PLUS AFTER LIMB AMPUTATION.
AGAIN, FUNDING HAS INCREASED
SLIGHTLY FRE7.66 MILLION TO
10.11 MILLION AND A SLIGHT DIP
IN 21 BUT WE ARE NOW ON AN
UPWARDS TRAJECTORY IN TERMS OF
PROJECTS THAT WE'RE FUNDING OF
THE MOST OF THE PROJECTS
ACTUALLY ARE RELATED TO ANIMAL
MODELS, PARTICULARLY IN
SALAMANDERS, BECAUSE THEY
REGENERATE THEIR LIMBS.
SO WHATEVER WE CAN LEARN FROM
SALAMANDERS, IF WE CAN APPLY TO
HUMANS, THAT WOULD BE GREAT.
SO WE HAVE A COUPLE OF
PUBLICATIONS THERE.
NEXT SLIDE.
AND SURVIVAL AND HEALTH OF
PRETERM INFANTS.
WE KNOW FROM THE CDC THAT
APPROXIMATELY 10.5% OF BIRTHS
ARE PREMATURE.
WE HAVEN'T SEEN A LOT OF IMPACT
OF THAT PERCENTAGE, AT LEAST IN
THE TIME SINCE I HAVE BEEN --
SINCE I WAS PRACTICING
NEONATOLOGY.
WE KNOW THAT THE BABIES WHO
SURVIVE HAVE LONG TERM
DISABILITIES.
AND THERE IS AN ESTIMATED 9%
NICU ADMISSION RATE IN THE
UNITED STATES.
SO HERE THE FUNDING IS
ESSENTIALLY FLAT, 159 MILLION TO
163 MILLION, AND THE NUMBER OF
FUNDED PROJECTS HAVE GONE DOWN.
THESE DO INCLUDE OUR TWO MAJOR
CLINICAL RESEARCH NETWORKS IN
NEONATAL RESEARCH AND THE FMU
NETWORK.
BUT ON THE OTHER HAND, WE HAD
SOME SIGNIFICANT FINDINGS JUST
RECENTLY, WITHIN THE LAST COUPLE
OF WEEKS.
THERE WAS A PUBLICATION FROM
NICHD RESEARCH SHOWING THAT
EXTREMELY PRETERM INFANTS WHO
WERE GIVEN FORTIFIED HUMAN,K
GREW LONGER AND MORE RAPIDLY
THAN INFANTS FED UNFORTIFIED
HUMAN MILK.
AND PRETERM INFANTS WHO WERE
EXPOSED TO MORE SPEECH IN THE
NICU GAINED SIGNIFICANTLY MORE
WEIGHT WHILE THEY WERE
HOSPITALIZED.
AND STEROID TREATMENT BEFORE
BIRTH APPEARS TO IMPROVE
SURVIVAL AND REDUCE
COMPLICATIONS AMONG EXTREMELY
PRETERM INFANTS.
AND THE LAST ONE -- NEXT SLIDE,
PLEASE.
PRECISION PEDIATRICS.
SO, WE DO HAVE AN EXPERT HERE ON
OUR COUNCIL FROM THE U.K., SO
IMPROVE CHILD HEALTH AND USING
THIS HORIZON SCANNING TO PERFORM
LONG TERM STRATEGIC PLANNING FOR
INTRAMURAL TRANS-NIH CLINICAL
PEDIATRIC RESEARCH TO OCCUR OVER
THE NEXT DECADE AND BEYOND.
SO THE GROUP -- NEXT SLIDE.
THE GROUP IS MEETING FOR THE
YEAR AND NOW HAS SOME DRAFT
PRIORITIES, WHICH HAVE NOT BEEN
ACCEPTED YET INTO A FINAL
REPORT.
THEY WILL BE PRESENTED TO THE
CLINICAL CENTER GOVERNING BOARD
AND EN THIS THE HOSPITAL'S BOARD
OF DIRECTORS.
AND IT'S AT A TIME WHEN THERE IS
A LOT OF TRANSITION IN THE
LEADERSHIP AT THE OVERALL NIH
LEVEL.
WE ALSO KNOW THAT, FOR EXAMPLE,
THE FUTURE OF THE INTRAMURAL
RESEARCH PROGRAM WILL BE
DISCUSSED AT THE ANNUAL
INSTITUTE DIRECTOR'S LEADERSHIP
FORUM.
SO WHAT OUR GROUP, WHICH
CONSISTS OF REPRESENTATIVES FROM
MULTIPLE INSTITUTES AND CENTERS
WHO ARE DOING PEDIATRIC
RESEARCH, CONCLUDED THAT WE NEED
ACROSS CUTTING INFRASTRUCTURE
ENHANCEMENTS TO INCREASE
EFFICIENCY.
IN OTHER WORDS, EACH INSTITUTE
HAS THEIR OWN WHATEVER, CORE
FACILITY, WHICH COULD BE
ENHANCED BY COMBINING THEM.
WE TALKED A LOT ABOUT WHAT ARE
THE PRIORITIES, BECAUSE
HISTORICALLY, THE PRIORITIES IN
THE CLINICAL CENTER ARE
INVESTIGATOR-DRIVEN.
IT'S NOT THE REVERSE WHERE YOU
SAY, HERE IS THE FUTURE.
WE NEED MORE RESOURCES TO STUDY
XYZ AND NEED TO RECRUIT PEOPLE
WHO ARE EXPERTS IN THIS AREA.
IT'S BEEN A REVERSE WHERE
INVESTIGATOR X SAYS HE OR SHE
NEEDS SUCH AND SUCH.
WE WERE TALKING ABOUT SCIENTIFIC
PRIORITIES FOR THE FUTURE, AND
WHY INTRAMURAL PROGRAM AND
SPECIFICALLY THE CLINICAL
CENTER, IS UNIQUE AND WHAT ARE
THE UNIQUE RESOURCES?
SO ONE OF THE THINGS THAT THE
CLINICAL CENTER HAS IS LONGEVITY
AND STABLE FUNDING.
SO THAT ALLOWS NATURAL HISTORY
STUDIES TO BE PERFORMED TO
SUPPORT RESEARCH ON THE
CONTINUUM FROM DIAGNOSE TO
TREATMENT AND THEN LONG-TERM
EFFECTS OF EITHER THE CONDITION
OR THE TREATMENT.
IT'S AN OPPORTUNITY TO CONDUCT
GENE THERAPY.
RIGHT NOW IT'S VERY DIFFICULT TO
TREAT CHILDREN UNDER AGE 2.
ALSO CAR T THERAPY AND OTHER
CELL THERAPY STUDIES.
IT'S COMPLICATED BECAUSE WE
DON'T REALLY HAVE A PEDIATRIC
HOSPITAL OR THE FACILITIES OF A
PEDIATRIC HOSPITAL AT THE
CLINICAL CENTER.
WE DO THINK THAT THERE IS AN
OPPORTUNITY TO DO PRECISION
MEDICINE, PHARMACOLOGICAL
INTERVENTIONS IN RARE
NON-MALIGNANT DISEASES AND TO
STUDY PHARMACOKINETICS AND
PHARMACODYNAMICS TO IMPROVE USE
AND DOSING IN CHILDREN.
NEXT SLIDE, PLEASE.
ALSO, THERE WERE RECOMMENDATIONS
TO PERFORM METABOLIC PHENOTYPING
FOR A VARIETY OF CONDITIONS AND
THEN TO DEVELOP A COHORT OF ALL
PEDIATRIC PATIENTS AT THE
CLINICAL CENTER TO MEASURE
PHYSICAL AND MENTAL HEALTH AND
DISEASE IN DIFFERENT DISORDERS.
AND ALSO TO HAVE A DEEPLY
PHENOTYPED PEDIATRIC COHORT TO
ESTABLISH STANDARD SET OF
CONTROL SAMPLES.
AND GIVEN ALL OF THE WORK, WE
FELT PRETTY STRONGLY THERE WAS A
LOW-COST OPTION OF INCREASING
SUPPORT TO DO RESEARCH STUDIES
IN PREGNANT AND LACTATING
PEOPLE.
SO AS I MENTIONED BEFORE, THE
NEXT STEPS WILL BE TO PRESENT
THIS REPORT TO THE CLINICAL
CENTER GOVERNING BOARD AND THE
CLINICAL CENTER HOSPITAL BOARD,
AND THEN TO DETERMINE WHAT CAN
BE IMPLEMENTED OF THE
RECOMMENDATIONS.
AND I'M HAPPY TO DISCUSS THIS
WHEN I'M DONE.
NEXT SLIDE, PLEASE.
OKAY, JUST BRIEF UPDATES ON
IMPROVE.
I DON'T NEED TO TELL ALL OF YOU
WE HAVE A MATERNAL HEALTH CRISIS
THAT IS GETTING WORSE.
TODAY'S "NEW YORK TIMES," FOR
EXAMPLE, FEATURED AN ARTICLE ON
THE DIRE SITUATION IN IDAHO
WHERE FIVE OF THE NINE MATERNAL
FETAL MEDICINE SPECIALISTS LEFT
THE STATE.
AND THERE IS A REAL PROBLEM
PROVIDING SPECIALTY CARE FOR
HIGH-RISK PREGNANT PEOPLE.
MEASURE 2.2 MILLION WOMEN LIVE
IN MATERNITY CARE DESERTS.
PLACES WITH NO MATERNAL CARE.
SO THE RED AREAS ARE THE WORST
AND THERE ARE ALSO -- I THINK
THAT IS 6 MILLION WOMEN WHO ARE
AFFECTED BY LOW ACCESS TO
MATERNAL CARE.
AND THIS IS INCREASING AND IN
PARTICULAR, IN THE PAST YEAR AS
EVIDENCED BY TODAY'S "NEW YORK
TIMES."
NEXT SLIDE.
ALSO, THE MAJORITY OF DEATHS ARE
OCCURRING BETWEEN ONE AND 364
DAYS POST-DELIVERY, AND THAT IS
AN AREA FOR INTERVENTION.
AS YOU CAN SEE HERE, BY THESE
NUMBERS, 65% OF WOMEN ARE DYING
AFTER DELIVERY.
SO, IT'S A PUBLIC HEALTH CRISIS
THAT WE ARE ADDRESSING AT NIH
WITH THE SUPPORT OF CONGRESS.
NEXT SLIDE, PLEASE.
SO, IN FISCAL YEAR 20, WE
DEVELOPED SOMETHING CALLED THE
IMPROVE INITIATIVE.
IT'S AN NIH-WIDE EFFORT THAT IS
CO-LED BY NICHD, THE NATIONAL
INSTITUTE OF NURSING RESEARCH
AND THE OFFICE OF RESEARCH ON
WOMEN'S HEALTH, ALTHOUGH NICHD
IS THE BASE FOR THE FUNDS FROM
CONGRESS TO THE IMPROVE
INITIATIVE.
THE PUZZLE GRAPHIC, THAT IS
IMPORTANT TO KEEP TRACK OF.
THERE ARE SIX COMPONENTS TO THE
IMPROVE INITIATIVE.
AND WE'LL GO THROUGH SOME OF
THEM SHORTLY.
THE GOALS ARE TO REDUCE
PREVENTABLE CAUSES OF MATERNAL
MORBIDITY AND MORTALITY,
SPECIFICALLY TO ADDRESS THE
DISPARITIES IN MATERNAL HEALTH
OUTCOMES WITH BLACK
AFRICAN-AMERICAN WOMEN, ALASKA
NATIVE AND AMERICAN INDIAN
WOMEN; HAVING INCREASED RATES OF
COMPLICATIONS AND MORTALITY, BUT
EVEN NON-HISPANIC -- EXCUSE ME,
HISPANIC WOMEN WHO PREVIOUSLY
HAD LOWER RATES THAN WHITE
WOMEN, THEIR RATES ARE
INCREASING AS WELL.
SO EVEN THOUGH THEIR RATES ARE
STILL MUCH LOWER THAN BLACK AND
AMERICAN INDIAN, ALASKA NATIVE
POPULATIONS, THEY ARE GETTING
WORSE.
SO WITH EXTENSIVE DISCUSSIONS
AMONG THE IMPROVED TEAM, WE
DECIDED TO FOCUS ON
IMPLEMENTATION AND
COMMUNITY-BASED RESEARCH BECAUSE
THE ACADEMIC APPROACH WASN'T
REALLY MAKING A SIGNIFICANT DENT
IN THE NUMBERS.
SO, WE DECIDED TO EXPAND
IMPLEMENTATION OF EVIDENCE-BASED
MATERNAL HEALTH CARE PRACTICES
BEFORE, DURING AND AFTER
PREGNANCY TO BUILD RESEARCH
CAPACITY IN THE COMMUNITY, IN
ORGANIZATIONS THAT DON'T
TYPICALLY DO RESEARCH, TO
PROMOTE ACCESS TO MATERNAL CARE
WITH INNOVATIVE TECHNOLOGY THAT
COULD BE APPLIED IN THESE
MATERNITY CARE DESERTS AND TO
ENABLE REAL-WORLD RESULTS WITH
ELECTRONIC HEALTH RECORD
STANDARDS.
FIRST I'M GOING TO TALK ABOUT
THE COMMUNITY CHALLENGE FOR
MATERNAL HEALTH.
WE MADE NOVEL USE OF CHALLENGES.
WHICH ARE ATYPICAL.
WE DON'T TALK ABOUT CHALLENGES
IN THE ADVISORY COUNCIL MEETING
BUT THESE ARE VERY MUCH LIKE
SHARK TANK AND ENABLE
NON-TRADITIONAL, GENERALLY
NON-ACADEMIC ORGANIZATIONS TO
PARTICIPATE AND COMPETE FOR
FUNDING.
SO, AGAIN WE WANTED TO EXPAND
THE GROUPS, PARTICULARLY THE
ADVOCACY GROUPS WHO HAVE VERY
MUCH TO SAY ABOUT WHAT IS GOING
ON IN THEIR OWN COMMUNITIES AND
THE NEEDS OF THEIR COMMUNITIES.
SO THE CHALLENGE WAS ENVISIONED
AS A WAY TO HELP THESE
COMMUNITY-BASED ORGANIZATIONS
DEVELOP RESEARCH INFRASTRUCTURE
AND CAPABILITIES.
AND WHAT YOU SEE IN THE GRAPHIC
IS -- THIS WAS BEFORE THE
PANDEMIC WHEN WE HELD A
LISTENING SESSION WITH SOME OF
THE BIGGEST AND MOST ACTIVE
MATERNAL HEALTH COMMUNITY
ORGANIZATIONS AND LISTENING TO
THEM HELPED TO FORMULATE THE
CHALLENGE.
WE GAVE 3 MILLION DOLLARS OUT OF
THE FISCAL YEAR 22 IMPROVE
MONAL, LIKE A FUNNEL.
IN ADDITION, NON MONETARY
INCENTIVES, SUCH AS MENTORING
AND RESPECT WITH WRITING
PROPPALS WAS PROVIDED.
AND WE NOW HAVE THE WINNERS WHO
ARE ANNOUNCED IN JUNE.
AND THE WINNERS WILL HAVE ONE
YEAR TO IMPLEMENT THEIR PROJECT
PLANS AND CONDUCT THEIR PROPOSED
RESEARCH AND REPORT THEIR
RESULTS.
AND THEN ULTIMATELY, THERE WILL
BE ANOTHER LEVEL OF SELECTION
WITH THE FINAL WINNERS ANNOUNCED
A YEAR FROM NOW.
SO HERE THEY ARE.
FIRST I WANT TO MENTION THE
GEOGRAPHY.
THERE HAS BEEN A VERY
INTENTIONAL EFFORT TO TRY TO
SPREAD THIS MONEY ACROSS THE
COUNTRY AND GET TO THE AREAS OF
BIGGEST NEED.
SO IF YOU LOOK AT THESE
ORGANIZATIONS AND LOOK AT, FOR
EXAMPLE, STUDIES INVOLVING
DUALAS, STUDIES INVOLVING
MATERNITY MENTAL HEALTH, STUDIES
INVOLVING RISK PREDICTION; THESE
ARE THE WINNERS AT THIS PHASE OF
THE COMPETITION.
NEXT SLIDE.
NOW CENTERS OF EXCELLENCE WERE
JUST ANNOUNCED RECENTLY.
NEXT SLIDE.
AND THE GOAL FOR THE MATERNAL
HEALTH RESEARCH CENTERS OF
EXCELLENCE TO REDUCE MATERNAL
MORBIDITY AND DECREASE
PREVENTIBLE MORTALITY.
BECAUSE 4-5 CASES OF MATERNAL
MORTALITY ARE PREVENTIBLE,
ACCORDING TO THE CDC.
SO WE WANT TO PARTNER WITH
COMMUNITIES THAT ARE AFFECTED
AND INCORPORATE THEIR NEEDS AND
PERSPECTIVES IN THE RESEARCH
PERFORMED BY THE CENTERS OF
EXCELLENCE.
SO, WE'RE GETTING COMMUNITY
PARTNERSHIP FROM THE VERY
BEGINNING OF THE RESEARCH
PROJECT.
IN ADDITION, WE'RE PERFORMING --
EACH CENTERS OF EXCELLENCE HAS A
TRAINING COMPONENT TO RECRUIT A
DIVERSE WORKFORCE FOR THE
FUTURE.
WE JUST HAD THE KICKOFF MEETING
A COUPLE OF -- LAST WEEK, AND
AGAIN, THESE GROUPS ARE --
YOU'LL SEE AFTER EACH SLIDE --
NEXT SLIDE.
THESE INVESTIGATORS ARE SPREAD
OUT AROUND THE COUNTRY.
THIS IS JUST A SIMPLISTIC VIEW
BECAUSE A NUMBER OF THE GROUPS
HAVE PARTNERSHIPS.
SO LUCKY THE MOREHOUSE SCHOOL OF
MEDICINE GROUP IS PARTNERING
WITH EMORY AND THERE ARE
MULTIPLE PARTNERSHIPS.
THE INVESTIGATORS ARE TERRIFIC.
IT IS OUR VISION THAT THEY WILL
ALL COLLABORATE WITH EACH OTHER.
THEY HAVE DIFFERENT APPROACHES
BUT TOGETHER, IT MAKES AN EVEN
BIGGER IMPACT.
SO THERE ARE 10 CENTERS AND IN
ADDITION, THERE ARE TWO HUBS.
THERE IS A DATA INNOVATION
COORDINATION HUB AND THERE IS AN
IMPLEMENTATION SCIENCE HUB.
SO AS WE LEARN MORE FROM THE
MATERNAL HEALTH TECHNOLOGY
CHALLENGE, WE CAN IMPLEMENT SOME
OF THOSE TECHNOLOGICAL ADVANCES
VIAA THE IMPLEMENTATION SCIENCE
HUB INTO THE CENTERS OF
EXCELLENCE.
NEXT SLIDE.
AND WHAT IS BEING COVERED IN THE
CENTERS OF EXCELLENCE, THERE IS
QUITE A BROAD RANGE OF TOPICS,
POPULATIONS, INCLUDING LOOKING
AT SOCIAL DETERMINANTS OF
HEALTH, INCLUDING THE EFFECTS OF
HOUSING STABILITY, INTERPERSONAL
VIOLENCE, ACCESS TO CARE ON
THESE RATES OF MATERNAL
MORBIDITY AND MORTALITY.
THE MEDICAL CONDITIONS ARE ON
THE LEFT.
AGAIN WE ARE LOOKING PRENATAL,
PERINATAL, LABOR AND DELIVERY
AND THE YEAR POSTPARTUM, WHICH
IS EXTREMELY IMPORTANT.
WE ARE LOOKING AT A DIVERSE
POPULATION AS WELL AS NOVEL
APPROACHES.
I DO WANT TO TAKE A MOMENT TO
SPECIFICALLY THANK EVERYONE, NOT
JUST AT NICHD, BUT ALL OF OUR
PARTNER INSTITUTE AND CENTERS
AND OFFICES WHO ARE VERY
INVOLVED.
NEXT SLIDE, PLEASE.
SO AGAIN, GEOGRAPHIC
DISTRIBUTION, WE'RE NOT
EVERYWHERE.
AND PARTLY THAT REFLECTS THE
FACT THAT WE DIDN'T GET
APPLICATIONS FROM SOME PLACES
THAT DEFINITELY DO HAVE NEEDS.
BUT WE INTENTIONALLY MADE AWARDS
CONSIDERING THE USE OF SPREADING
THE FUNDS AROUND THE COUNTRY.
NEXT SLIDE.
SO THE NEW DIRECTOR OF NIAID
SILENT DOCTOR JEAN HARASSO.
I DON'T KNOW -- I FORGOT WHAT
DAY SHE STARTS BUT SHE WAS THE
DIRECTOR OF THE DIVISION OF
INFECTIOUS DISEASES AT THE
UNIVERSITY OF ALABAMA AT
BIRMINGHAM.
SHE IS AN EXPERT ON THE HUMAN
MICROBIOME, SPECIFICALLY AS IT
RELATES TO THE FEMALE
REPRODUCTIVE TRACT AND HORMONAL
CONTRACEPTION.
SO WE ARE VERY EXCITED THAT WE
HAVE A PARTNER COMMITTED TO OUR
POPULATIONS AS WELL.
SHE IS ALSO AN EXPERT IN
PREVENTION OF HIV INFECTION AND
THE PATHOGENESIS AND MANAGEMENT
OF BACTERIAL ADVANTAGE NOSEIS.
SO ONCE SHE GETS SETTLED WE WILL
BE INVITING HER TO A FUTURE
ADVISORY COUNCIL MEETING.
I MELT HER VIA ZOOM AND SHE WILL
BE TERRIFIC.
WE ALSO HAVE TWO MAJOR OFFICES
AT THE DIRECTOR'S OFFICE WHO WE
WILL BE COLLABORATING WITH AND
THAT IS THE NEW ASSOCIATE
DIRECTOR FOR BEHAVIORAL AND
SOCIAL SCIENCES RESEARCH.
THAT IS DR. JAIN SIMONI, THE
FORMER PROFESSOR AND DIRECTOR OF
CLINICAL TRAINING AT THE
UNIVERSITY OF WASHINGTON.
SHE IS ALREADY ON SITE AND SHE
IS THE FOUNDING DIRECTOR OF THE
UNIVERSITY WASHINGTON FOR HIV
AND THE CO-DIRECTOR OF THE UW
FRED HUTCH CENTER FOR AIDS
RESEARCH.
HER BA IS THE FROM PINS TON AND
PH.D. FROM UCLA.
AND ALSO, ON SITE IS THE NEW
DIRECTOR OF THE NIH TRIBAL
HEALTH RESEARCH OFFICE
DR. KAREENA WALTERS WHO WAS
FORMERLY A TENURED FULL
PROFESSOR AND CATHERINE CHAMBERS
SCHOLAR AT THE UNIVERSITY OF
WASHINGTON.
SO I'M GOING TO ASSUME THEY
PROBABLIY KNOW EACH OTHER.
AND SHE IS ALSO FORMER ASSOCIATE
DEAN FOR RESEARCH AT THE UW
SCHOOL OF SOCIAL WORK.
ALL HER TRAINING WAS AT UCLA.
WE WILL BE COLLABORATING WITH
BOTH OF THEM, HISTORICALLY, THE
OFFICE OF BEHAVIORAL AND SOCIAL
SCIENCES RESEARCH HAS BEEN VERY
GENEROUS IN COFUNDING NICHD
INITIATIVES AND WE WILL BE VERY
INVOLVED IN THE TRIBAL HEALTH
RESEARCH OFFICE AS WE TRY TO
ADDRESS MATERNAL MORTALITY IN
AMERICAN INDIAN POPULATIONS.
NEXT SLIDE.
WE ARE VERY SAD TO REPORT THE
RETIREMENT OF DR. FAULTY BREN EN
WHO IS THE DIRECTOR OF THE
NATIONAL LIBRARY OF MEDICINE --
PATTY BRENNAN -- EFFECTIVE
SEPTEMBER 30.
THE FIRST NURSE, INDUSTRIAL
ENGINEER AND WOMAN TO LEAD THE
NATIONAL LIBRARY OF MEDICINE.
AN INCREDIBLE STA STRATEGIC AND
INNOVATIVE THINKER.
IN THE INTEREST OF TIME I WON'T
READ ALL OF HER ACHIEVEMENTS
WITH YOU THE ACTING DIRECTOR
WILL BE DR. STEVEN SHERRY.
THIS CAME AS A SURPRISE.
THIS WAS JUST ANNOUNCED LAST
WEEK.
NEXT SLIDE.
IMPORTANTLY, I WOULD LIKE TO
WELCOME OUR NEW CLINICAL
DIRECTOR.
YOU'LL BE HEARING FROM HER
SHORTLY, CATHERINE GORDON.
LET'S GIVE HER A ROUND OF
APPLAUSE.
[ APPLAUSE ]
AND MANY OF YOU RECOGNIZE HER
FROM HER PREVIOUS SERVICE ON THE
ADVISORY COUNCIL FOR NICHD.
BUT IN THE MEANTIME, HOLDING
DOWN THE FORT IN A INCREDIBLE
WAY IS DR. LAVERNE MENSA WHO I
SEE IN THE BACK.
SO LAVERNE IS THE DEPUTY
DRIBBING CLINICAL DIRECTOR OF
NICHD AND LET'S GIVE HER A ROUND
OF APPLAUSE.
THANK YOU VERY MUCH, LAVERNE.
[ APPLAUSE ]
AND NEXT SLIDE.
ALSO IN THE ROOM, JOE CAN YOU
JUST RAISE YOUR HAND?
THERE YOU ARE IN THE BACK.
WE'RE GOING TO ANNOUNCE THE JOE
BEGIN HART, THE NEW DEPUTY
DIRECTOR OF THE DIVISION
EXTRAMURAL ACTIVITIES IN THE
OFFICE OF EXTRAMURAL POLICY.
SO HE AND REBEKAH WORK VERY
CLOSELY TOGETHER.
JOE, I KNOW WE ARE RUNNING
BEHIND SO I'M JUST GOING TO
LIKE -- IF YOU WANT TO READ THE
SLIDES, YOU KNOW THAT JOE SAY
FELLOW QUAKER AS AM I.
SO NEXT SLIDE.
AND DR. JOANNA -- IS SHE HERE?
SHE IS JOINING US AS THE CHIEF
OF THE SCIENTIFIC REVIEW BRANCH.
AND SHE ORIGINALLY IS FROM
POLAND.
SO WE LOOK FORWARD TO WORKING
WITH HER.
NEXT SLIDE.
AND THEN WE'D LIKE TO
CONGRATULATE JUANITA CHIN.
ARE YOU HUER?
SHE IS IN THE WAY, WAY BACK.
SHE WAS ELECTED BY HER PEERS TO
THE BOARD OF DIRECTORS OF THE
POPULATION OF ASSOCIATION OF
AMERICA.
SHE IS A PROGRAM DIRECTOR IN THE
POPULATION BRANCH AND MANAGES
THE DEMMING ON OF HEALTH,
MORTALITY AND COMPILATION
PROGRAMS AS WELL AS MANY
SBIRs.
AND WILL JUANITA YOU ARE
INVALUABLE AND THRILLED YOU HAVE
BEEN RECOGNIZED BY YOUR PEERS.
AND THEN SADLY, WE NEED TO
REPORT THE PASSING OF DR. KORBY
WHO RETIRED IN 2018 AFTER A
40-YEAR CAREER AT NICHD IN THE
FIRSTY BRANCH AND ITS
PREDECESSORS.
HE WAS A PROGRAM DIRECTOR FOR
MANY GRANTS IN REPRODUCTIVE
IMMUNOLOGY AND IMMUNOLOGY.
HE CONCEIVED THE IDEA FOR A
MANAGED INTERDISCIPLINARY
COLLABORATIVE TEAM OF
RESEARCHERS TO ADVANCE THE
SCIENCE OF BLASTOCYSTS
IMPLEMENTATION.
AND HE RECEIVED A NUMBER OF
AWARDS.
AND WE ARE VERY GRATEFUL FOR HIS
SERVICE.
AND WE WILL REMEMBER HIM FONDLY.
NEXT SLIDE.
SO AGAIN, WE ARE HIRING.
WE ARE ALWAYS LOOKING FOR
FABULOUS PEOPLE TO JOIN THE
ORGANIZATION WITH A VARIETY OF
SKILL SETS.
WE ARE HAPPY TO ANSWER ANY
QUESTIONS THAT YOU HAVE.
WE HAVE A NUMBER OF BRANCH CHIEF
POSITIONS OPEN.
THOSE WILL BE THE HIGHEST
POSITIONS OPEN AT THIS POINT,
BUT YOU'RE WELCOME TO TALK WITH
ANY OF US.
IF YOU KNOW OF CANDIDATES WHO
MIGHT BE INTERESTED IN JOINING
OUR TEAM.
SO WITH THAT, I'M HAPPY TO TAKE
A FEW QUESTIONS.
NEXT SLIDE.
THANK YOU FOR YOUR ATTENTION.
REBEKAH -- I'M SUPPOSED TO GO 45
MINUTES, RIGHT?
>>WE ARE RUNNING A LITTLE
BEHIND BUT -- WE HAVE A LOT OF
NEWS.
QUESTIONS?
>>TWO QUICK QUESTIONS.
>>LEES USE YOUR MICROPHONE.
>>LET'S LUCKY JAIN SPEAKING.
>>HI, LUCKY JAIN.
TWO QUICK QUESTIONS.
THANK YOU FOR YOUR WONDERFUL
REPORT.
THE MATERNAL HEALTH CENTERS FOR
IMPROVE INITIATIVE, HOW WILL
THEY INTERACT WITH THE CENTERS,
THE FIRST QUESTION.
AND THEN THE SECOND QUESTION IS,
WITH THE BIG GAP BETWEEN THE
PROPOSED BUDGET FROM THE HOUSE
AND SENATE, IN YOUR EXPERIENCE,
WHERE ARE WE LIKELY TO LAND AT
THE END OF THE NEGOTIATIONS.
>>THE SECOND ONE IS EASIER TO
ANSWER BECAUSE I HAVE NO IDEA
HOW TO ANSWER THAT ONE.
THE FIRST ONE -- THE CENTERS OF
EXCELLENCE ARE INDEPENDENT OF
THE MFMUs AND OFF THE TOP OF
MY HEAD, I DON'T THINK THERE ARE
EVEN ANY THAT ARE IN THE SAME
LOCATION -- MAYBE PARTNERSHIPS
BUT THE FUNNED GRANTEES -- WELL,
COLUMBIA IS A SITE, FOR EXAMPLE,
THAT HAS A CENTERS OF
EXCELLENCE -- A CENTER FOR
EXCELLENCE, AND THEY ARE PART OF
THE MFMU.
BUT THERE IS NO FORMAL MECHANISM
FOR THEM TO COLLABORATE.
BUT THE INFORMALLY, CERTAINLY --
AT THE MFMU, AS PART OF NICHD
OVERALL IN INVESTMENT IN
MATERNAL HEALTH.
IS NAKITA HERE?
DO YOU WANT TO MAKE A COMMENT?
>>SENIOR LEADERSHIP PROGRAM
TRAINING.
>>BUT I WOULD ADD THEY ARE BOTH
COOPERATIVE AGREEMENTS SO IT
GIVES US OPPORTUNITIES AS STAFF
TO FORGE THE COLLABORATIONS THAT
WOULD BE MOST BENEFICIAL.
AND THIS IS [ INAUDIBLE ]
>>BUT AGAIN, THIS IS WHERE
THE -- DATA SHARING IS GOING TO
BE EXTREMELY IMPORTANT TO
INCREASE OUR NUMBERS.
AND ALSO THE IMPLEMENTATION HUB.
SO IT'S QUITE POSSIBLE THAT
THERE IS GOING TO BE TECHNOLOGY,
FOR EXAMPLE, THAT IS DEVELOPED
AS PART OF THE RADx MATERNAL
HEALTH THAT COULD BE IMPLEMENTED
IN THE MFMU AS WELL AS CENTERS
FOR EXCELLENCE.
>>THANK YOU.
>>THIS IS SHERRY.
TO ADD ON TO THAT, AS THE
CENTERS OF EXCELLENCE ARE BEING
STOOD UP, IS THERE DATA
HARMONIZATION SO THAT THE WHOLE
WILL BE GREATER THAN THE SUM OF
ITS PARTS?
>>THAT WAS A MESSAGE THAT WE
REALLY TRIED TO COMMUNICATE AT
THE KICKOFF MEETING.
WE GAVE AS AN EXAMPLE, THE
PREVAIL KITS INITIATIVE THAT WE
TOLD YOU ABOUT PREVIOUSLY FOR
COVID-19, AND HOW THE EIGHT
DIFFERENT GROUPS, WHICH DIDN'T
HAVE A PRIOR HISTORY OF
COLLABORATING TOGETHER AND WERE
ALL USING DIFFERENT TECHNOLOGIES
TO DIFFERENTIATE MISC FROM
CASAKI DISEASE, FOR EXAMPLE,
THAT THEY DEVELOPED THEIR OWN
ORGANIC NETWORK AND SUCCESSFULLY
COLLABORATED SO THAT THEY
JOINTLY SUCCESSFULLY COMPETED
FOR FUNDING IN RECOVER, FOR LONG
PEDIATRIC COVID.
SO I THINK THE FACT THAT WE
MENTIONED THAT MONEY --
ADDITIONAL MONEY CAME OUT OF
COLLABORATION IN THE COURSE OF
DAY, WE HEARD THE PRINCIPLE
INVESTIGATORS REFERRING TO THE
PREVIOUS CENTER FOR EXCELLENCE
INVESTIGATORS IN WAYING THAT
THEY COULDN'T COLLABORATE.
SO I'M SURE THEY GOT THAT
MESSAGE AND THE INTENT, THE
VISION, IS DEFINITELY TO MAKE
THE WHOLE GREATER THAN THE SUM
OF THE PARTS.
>>[ INDISCERNIBLE ]
REALLY GLAD TO HEAR ABOUT THE
CLINICAL CENTER BEING DEVELOPED.
-- RECOMMENDATION -- INTRAMURAL
DATA GENERATION COLLECTION AND
SHARING FRAMEWORK HAS BEEN
SILOED FROM THE EXTRAMURAL
FRAMEWORK.
AND GIVEN THE FOCUS OF THE
CENTER ON COHORT GENERAL
INDICATION AND NATURAL HISTORY,
IT MIGHT BE A STRATEGIC
OPPORTUNITY TO REVIEW THAT IN A
PRO EFFECTIVE FASHION.
>>THANK YOU FOR THAT COMMENT.
DATA SHARING IN GENERAL IS FRONT
AND CENTER NOW WITH EXTRAMURAL
OPPORTUNITIES BUT IT'S
DEFINITELY BEING DISCUSSED AT
THE LEADERSHIP MEETINGS OF THE
SCIENTIFIC DIRECTORS AND
CLINICAL DIRECTORS AND HOW IS IT
GOING TO BE APPLIED?
I DON'T KNOW, CHRIS, DO YOU HAVE
ANY SPECIFIC COMMENTS ON THAT?
>>YES, I MEAN IF ALL THE
INTRAMURAL PROGRAM HAS AND BEING
REQUESTED TO MAKE A DATA SHARING
PLAN AVAILABLE AS OF LAST
DECEMBER AND NOW WE'RE IN THE
IMPLEMENTATION PHASE AND WE HAVE
IN OUR INSTITUTE, WE HAVE REALLY
JUST BEING INSTRUMENTAL WITH
WORKING OUT HOW WE'RE GOING TO
DO THAT, WHAT THE MECHANICS OF
THAT WILL BE, AND REALLY WHAT
IT'S GOING TO MEDE FOR THE
INTRAMURAL TO SHARE ACROSS THE
ENTIRE IC -- SO IT'S STILL IN
THE INFANCY TRYING TO WORK OUT
EXACTLY HOW TO IMPLEMENT THAT
BUT IT'S BEEN VERY --
AGGRESSIVELY PURSUED ACROSS THE
ENTIRE INTRAMURAL PROGRAM.
>>AND JUST TO THE -- LIKE YOUR
OFFICE OF DATA SHARING, YOU GUYS
HAVE TREMENDOUS THOUGHT
LEADERSHIP IN THAT FRAMEWORK.
SO IT'S A GREAT OPPORTUNITIY.
>>WE LIKE TO ACKNOWLEDGE
REBEKAH ROSEN AND HER TEAM FOR
THAT.
THE OTHER THING IS THE
ELECTRONIC HEALTH RECORDS.
THERE IS STILL A DISCUSSION
ABOUT WHAT ELECTRONIC HEALTH
RECORD TO USE AT THE CLINICAL
CENTER.
THAT IS BEYOND PEDIATRICS.
BUT THEY ARE NOT USING THE
RECORD SOFTWARE THAT OTHER
HOSPITALS USE.
SO THEY ARE GOING TO HAVE TO
MAKE KNOW INVESTMENT TO MAKE
THAT CHANGE.
BUT I THINK THAT'S A CHALLENGE
RIGHT NOW.
OKAY, I DON'T WANT TO TAKE UP
TOO MUCH TIME.
WE ARE HAPPY TO TALK AT THE
BREAK IF YOU HAVE ADDITIONAL
QUESTIONS.
SO I'M GOING TO HAND IT BACK TO
REBEKAH.
>>ALL RIGHT, I WANTED TO LET
OUR AD-HOC MEMBERS WHO ARE
JOINING US FOR THE FIRST TIME,
KNOW THAT IN OUR SEPTEMBER
MEETING, WE TYPICALLY FOCUS ON
NICHD INTRAMURAL PROGRAM AND SO
NOW, WE'RE GOING TO HEAR FROM
DR. CHRIS McBAIN, THE
SCIENTIFIC DIRECTOR TO, GIVE US
THE ANNUAL REPORT FROM THE
DIVISION OF INTRAMURAL RESEARCH.
>>GOOD AFTERNOON, EVERYBODY AND
THANK YOU VERY MUCH FOR GIVING
ME THIS OPPORTUNITY TO PRESENT
TO YOU.
AND HAVING DONE THIS TWICE AS
THE ACTING SCIENTIFIC DIRECTOR,
IT'S A GREAT HONOR TO DO IT NOW
AS -- OF INTRAMURAL RESEARCH.
NEXT SLIDE.
SO, I'M GOING TO TALK ABOUT FOUR
REAL MAIN THINGS THIS AFTERNOON,
REAL TO GIVE YOU A BRIEF
PROGRAMMATIC OVERVIEW AND OUR
BUDGET AND PERSONNEL UPDATES AND
WE'LL SPEND THE BULK OF OUR TIME
TALKING ABOUT FUNDING
OPPORTUNITIES AND OUR EDUCATION
UPDATES.
AND WE HAVE BEEN WORKING VERY
HARD ON INVIGORATING THAT AND
EXPANDING THAT AND THINKING OF
WAYS WE CAN INCREASE
OPPORTUNITIES FOR OUR TRAINEES
AND YOUNG INVESTIGATORS AND SO
ON.
I'LL GET INTO THAT IN GREATER
DETAIL.
NEXT SLIDE, PLEASE.
AND NEXT SLIDE.
SO, THE INTRAMURAL PROGRAM IS
CURRENTLY EIGHT DIVISIONS.
WE HAVE A VERY BROAD PORTFOLIO
OF BOTH THE BASIC TRANSLATIONAL
AND CLINICAL RESEARCH.
WE SPAN DEVELOPMENT OF BIOLOGY,
TRANSLATIONAL MEDICINE, ALL THE
WAY TO OUR RECENTLY-ACQUIRED
DIVISION OF POPULATION HEALTH
RESEARCH.
SO WE ARE SPLIT ABOUT 70% IN
TERMS OF BASIC RESEARCH
INVESTIGATORS AND ABOUT 30 IN
TRANSLATIONAL AND CLINIC.
NEXT SLIDE, PLEASE.
WHO ARE WE IN NUMBERS?
WE CURRENTLY OCCUPY 830 STAFF.
AND THAT INCLUDES ALL OF OUR
INTRAMURAL RESEARCH AND TRAINEES
AS WELL AS POPULATION HEALTH
RESEARCH, AS WELL AS ALL THE
VOLUNTEERS WE HAVE INSIDE OUR
INTRAMURAL RESEARCH PROGRAM.
AND CURRENTLY WE HAVE 70PIs.
61 ARE SENIOR INVESTIGATORS WHO
ARE TENURED.
WE HAVE NINE CURRENT TENURED
TRACK INVESTIGATORS AND TWO
ASSISTANT CLINICAL
INVESTIGATORS.
AND THESE PIs HAVE 62 STAFF
SCIENTISTS WHO ARE ASSOCIATED
WITH ALL THE RESEARCH PROGRAMS.
AND A LITTLE UNDER 300 TRAINEES
OF THIS TYPE, WHICH SPANS
EVERYTHING FROM GRADUATE,
UNDERGRADUATE, POSTBACS AND
POSTDOCS.
SO WE'RE A REASONABLE SIZE
INSTITUTE.
AND OUR BASIC AND CLINICAL
PROGRAMS ARE DIVIDED ACROSS 12
SCIENTIFICALLY-BASED AFFINITY
GROUPS AND I'LL DESCRIBE THAT IN
MORE DETAIL AND WE HAVE AN
EPIDEMIOLOGIC PROGRAM OF THE
DIVISION OF POPULATION HEALTH
RESEARCH DIVIDED INTO THREE
BRANCHES AND ONE PROGRAM.
WE HAVE CLINICAL PROGRAMS AND
FIVE MEDICAL TRAINING PROGRAMS
WHICH ARE PEDIATRIC AND END
CHRONOLOGY AND --
[ READING ]
THIS IS HOW WE ARE ORGANIZED AND
WE ARE ASSEMBLED ACROSS CAMPUS
IN TERMS OF THESE GEOGRAPHIC
LOCATIONS, ULTRASCIENTIFIC HUBS
FOR ALL OF OUR DIFFERENT
RESEARCH PROGRAMS.
AND OF THESE SCIENTISTS, WE
ALLOW 10 YEARS AGO, WE HAD A
REORGANIZATION.
WE WERE ABLE TO ADOPT A
SEMI-FLAT STRUCTURE, WHICH GAVE
EVERYONE THE OPPORTUNITY TO
ASSEMBLE INTO WHAT WE CALL
AFFINITY GROUPS.
THESE ARE ALL OF OUR AFFINITY
GROUPS.
ABOUT A DOZEN OF THEM.
THESE ARE FLUID GROUPS THAT EACH
PI CAN CHOOSE AS MANY AS THEY
LIKE.
WE SHARE ALL OUR INFORMATION AND
THESE ARE GREAT OPPORTUNITIES
FOR OUR TRAINEES AND POSTDOCS.
THEY ARE CLUSTERED TO
DISCIPLINESES AND THEY TEND TO
BE REASONABLY FLUID PEOPLE,
FUELING THE NEED TO 11 A
DIFFERENT APPROACH OR DIFFERENT
TOPIC TO ATTAIN AS MANY OF THESE
AFFINITY GROUPS AS POSSIBLE.
SOME ARE VERY LARGE AND SOME ARE
QUITE SMALL.
SO WE ARE IN THE PROCESS OF
HAVING A CONVERSATION ABOUT HOW
DO WE THINK OR WHAT WE NEED TO
DO TO MAYBE ADAPT AND CHANGE.
THESE WERE SET UP 10 YEARS AGO,
LONG BEFORE I WAS THE SCIENTIFIC
DIRECTOR AND WE ARE STILL COMING
TO THE RELATION THAT HOW TO
CLUSTER AND GROUP OUR SCIENTISTS
MOVING FORWARD.
NEXT SLIDE.
SO IN TERMS OF BUDGET AND
PERSONNEL, WE -- NEXT SLIDE.
WE OCCUPY OR TAKE ABOUT 13% OF
THE OVERALL NICHD BUDGET
ALLOCATION.
NEXT SLIDE.
OF THAT 13%, WE CURRENTLY HAVE
230 MILLION DOLLAR BUDGET.
ABOUT 60% OF THAT IS WHAT WE
CALL SOFT MONEY IN SALARIES AND
ANIMAL CARE AND THEN THE REST OF
IT GOES TOWARDS CLINICAL CENTER
OR TAX, WHICH KEEP THE LIGHTS ON
IN THE CLINICAL CENTER AND KEEPS
IT RUNNING AND THEN SERVICES
SUPPLY FUND WHICH YOU CALL YOUR
OVERHEAD IF YOU LIKE.
WE PUT A SMALL AMOUNT FOR
TEMCALL EQUIPMENT.
WE RECOVERED FROM TWO SERIOUS
FLOODING INCIDENTS ON CAMPUS
THIS YEAR WHICH NECESSITATED
REPLACING SOMEWHERE BETWEEN 3-4
MILLION DOLLARS WORTH OF
EQUIPMENT.
THAT IS WHERE OUR MONEY IS.
YOU CAN SEE ABOUT 60% OF THAT IS
WHERE WE CAN SORT OF HAVE THE
LUXURY OF REDISTRIBUTING AND
SUPPORTING SCIENCE.
N SLIDE.
IN TERMS OF TRAINEE NUMBERS, WE
HAVE A LITTLE UNDER 300 TRAINEES
AT THE MOMENT AND THE VAST
MAJORITY, 170 ARE POSTDOCTORAL
FELLOWS.
THEY ARE BOTH WHAT WE CALL
FELLOWS WHO ARE UNITED STATES
CITIZENS OR VISITING FELLOWS WHO
COME TO US FROM OVERSEAS.
WE HAVE BACCALAUREATE STUDENTS
WHO HAVE FINISHED THEIR
UNDERGRADUATE DEGREES WHO COME
AND SPEND SOMETIMES TWO YEARS IN
A LAB BEFORE THEY GO ON TO
MEDICAL SCHOOL OR GRADUATE
SCHOOL.
AND OUR SUCCESS RATE OF PUTTING
THESE POSTBACS INTO HIGHER
EDUCATION AND MEDICAL SCHOOL AND
GRADUATE SCHOOL IS, WE ARE GOING
TO TRY THIS.
WE CURRENTLY HAVE 14 GRADUATE
STUDENTS AND I'LL TALK A LITTLE
BIT ABOUT THAT AS WE GET THROUGH
THIS.
CURRENTLY 13 CLINICAL FELLOWS
AND THIS YEAR WE HAD 61 SUMMER
INTERNS.
IT'S GREAT TO CONVEY TO YOU THAT
WE HAD IN-PERSON SUMMER PROGRAM
THIS YEAR.
THE FIRST TIME WE HAD SUMMER
STUDENTS BACK IN PLACE SINCE
2020, BEFORE COVID AND IT WAS
JUST -- I'LL SHOW YOU A COUPLE
OF SLIDES FROM POSTER
PRESENTATIONS SO YOU CAN REALLY
FEEL HOW THE EXCITEMENT OF
HAVING STUDENTS BACK ON CAMPUS
IS REALLY A TREMENDOUS INFLUENCE
ON US.
IN TERMS OF RETIREMENTS AND
DEPARTURES.
MARIA DUFAU RETIRED AT THE END
OF LAST YEAR.
AND DR. PEDDADA, A BRANCH CHIEF
AND SENIOR INVESTIGATOR, MOVED
TO TAKE A SIMILAR POSITION AT
NIEHS IN NORTH CAROLINA AND THE
DIVISION OF POPULATION HEALTH
RESEARCH IS RECRUITING FOR BRACH
CHIEF CURRENTLY.
NEXT SLIDE.
WE HAVE JOAN MARINI, SENIOR
INVESTIGATOR ON THE SECTION OF
HERETTABLE DISORDERS OF BONE AND
EXTRACELLULAR MATRIX WAS
APPOINTED SCIENTIST EMERITUS.
JUDY KASSIS RETIRED IN FEBRUARY.
SHE WAS A SENIOR INVESTIGATOR IN
THE SECTION ON GENE EXPRESSION.
AND THEN JAMIE MORTON, A
TENURE-TRACK INVESTIGATOR IN THE
DIVISION OF POPULATION HEALTH
RESEARCH LEFT TO START HIS OWN
CONSULTING FIRM.
JAMES MILLS WHO WAS A SENIOR
INVESTIGATOR IN THE EPIDEMIOLOGY
BRANCH IN THE POPULATION HEALTH
SCIENCE RETIRED IN APRIL OF THIS
YEAR AS DID DOUG FIELDS IN EARLY
MAY.
AND JUST AS DOUG WAS WALKING OUT
THE DOOR, HE WAS AWARDED THE
2023 MENSA FOUNDATION PRIZE FOR
ONE OF HIS SCIENTIFIC
DISCOVERIES ON GLIA AND WRAPPING
OF NEURONS WHICH FACILITATES
MYELIN PLASTICITY.
SO REALLY NICE PARTING AND
ACHIEVEMENT AS HE WENT INTO
RETIREMENT.
SO NOT EVERYBODY IS RUNNING FOR
THE DOORS.
WE HAVE -- THIS IS REALLY
ALLOWING US TO HAVE REALLY
FANTASTIC RECRUITMENT
OPPORTUNITIES.
WE ARE JUST ECSTATIC TO HAVE
CATHERINE GORDON JOIN US, SHE
JOINED TWO DAYS AGO.
IT'S GOING TO BE A FANTASTIC
OPPORTUNITY FOR HER AND I TO
THINK ABOUT HOW TO SHAPE OUR
CLINICAL PROGRAM AS I SAID.
MANY OF YOU HAVE KNOWN HER
THROUGH HER ROLE IN OUR ADVISORY
COUNCIL AND I CAN'T TELL YOU HOW
EXCITED I AM TO HAVE YOU ONBOARD
FINALLY TO GET GOING WORKING SO
IT WILL BE REALLY FANTASTIC.
AND ONE OF THE FIRST THINGS I
DID WHEN I BECAME SCIENTIFIC
DIRECTOR EARLY ON THIS YEAR WAS
TO SCRAMBLE TO TAKE ADVANTAGE OF
THE TENURED TRACK INVESTIGATOR
SEARCH THAT HAPPENS EVERY YEAR
ON CAMPUS.
THIS IS A MULTI-INSTITUTE,
NIH-WIDE RECRUITMENT FOR YOUNG
INVESTIGATORS AT THE TENURED
TRACK LEVEL.
THEY DON'T APPLY TO A SPECIFIC
INSTITUTE, PER SE, THEY APPLY TO
THE NIH CENTRALLY.
THEY ARE REVIEWED ACROSS
COMMITTEES THAT ARE COMPRISED OF
INDIVIDUALS FROM ALL OF THE
ICs AND THEN THE TOP
CANDIDATES ARE ADVANCED THE
SCIENTIFIC DIRECTORS FOR
CONSIDERATION FOR IF THEY HAVE A
POSITION AVAILABLE THAT FITS THE
SCIENTIFIC PORTFOLIO.
AND WE WERE EXTREMELY FORTUNATE
IN OUR TIMING TO HAVE LEIA ROWS
IN AS A NEW INVESTIGATOR.
SHE WORKS ON CHROMOSOME DYNAMICS
AND HAS BEEN A PIONEER IN THIS
REALLY POWERFUL DNA FISH
TECHNIQUE.
SHE IS CURRENTLY ON MATERNITY
LEAVE AND WILL JOIN US IN ABOUT
A MONTH OR TWO.
SO IT'S JUST REALLY FANTASTIC
THAT WE WERE ABLE TO LAND LEIA.
AND SAYING THAT, WE ARE
RECRUITING.
AND AS WAS SHOWN EARLIER, WE
HAVE A NUMBER OF OPPORTUNITIES
BUT WE'RE CURRENTLY RECRUITING
FOR OUR CLINICAL TENURE-TRACK
INVESTIGATOR AND TRYING TO CAST
A WIDE NET TO BRING IN AS MANY
AS POSSIBLE WHO ARE PROBABLY --
REALLY INTERESTED IN BASIC AND
CLINICAL RESEARCH.
WE WERE EXTREMELY LUCKY IN
RECRUITING SARAH SHEPHERD A YEAR
AGO.
I THINK SHE PRESENTED TO COUNCIL
AND THIS CANDIDATE IS AN OPEN
SEARCH AT THE MOMENT.
I HAVE BEEN WAITING FOR HER TO
COME ONBOARD SO WE CAN HAVE HER
HELP IN IDENTIFYING THE
CANDIDATE.
IF YOU ARE AWARE OF ANYBODY WHO
WOULD FIT THE BILL FOR THIS, THE
APPLICATION PROCESS IS OPEN AND
WE'LL KEEP EXCITING CANDIDATES
UNTIL WE FILL THAT.
WE HAD A NUMBER OF REALLY GREAT
HONORS IN OUR INVESTIGATOR ROLE
THIS YEAR.
I WANT TO SHARE A FEW OF THEM.
JUAN WHO IS ONE OF OUR
DISTINGUISHED INVESTIGATORS HE
LEADS THE SECTION ON
INTRACELLULAR PROTEIN
TRAFFICKING.
HE GAVE THE KEY PORTER LECTURE
AWARD FOR THE AMERICAN SOCIETY
OF CELL BIOLOGY AND YUN GAVE A
SIDNEY I THINK BAR DISTINGUISHED
LECTURE AWARD AT THE AMERICAN
THYROID ASSOCIATION.
AND PARTICULARLY EXCITING IS THE
AWARD TO SARAH SHEPHERD.
SHE IS OUR MOST RECENT TENURED
TRACK HIRE.
THE HEAD OF THE UNIT ON VASCULAR
MALFORMATIONS.
SHE WON THE YOUNG INVESTIGATOR
AWARD FROM THE AMERICAN JOURNAL
OF MEDICAL GENETICS AND THEN
CARREL WHO IS A CLINICIAN WON
TWO AWARDS IN FRONTIERS SCIENCE
AND DISTINCTION AND OUTSTANDING
CLINICAL INVESTIGATOR AWARD FROM
THE ENDOCRINE SOCIETY.
AND FINALLY, RENEE D SOUZA,
CHIEF ON THE SECTION OF
MOLECULES AND THERAPIES FOR
CRANIODENTAL DISORDERS AND
DIRECTOR OF THE NIDCR.
SHE WON THE RECIPIENTS OF THE
EXCELLENCE RESEARCH AWARD.
SO WE ARE EXTREMELY PROUD OF OUR
INVESTIGATORS AND THEIR
ACCOMPLISHMENTS.
SO, WHAT I WANT TO SPEND THE
OTHER BULK OF MY TIME, WE HAVE
RECOGNIZED THAT IN THE LAST
YEARO SORE THAT IT'S REALLY
IMPORTANT NOT ONLY FOR OUR
INVESTIGATORS, YOUNG
INVESTIGATORS, OUR POSTDOCTORAL
FELLOWS AND REALLY ALL OF OUR
TRAINING LEVELS TO GET
OPPORTUNITIES TO APPLY AND
COMPETE FOR MONEY.
AND THIS IS ONE OF THE
INITIATIVES THAT WAS MODELED
AFTER THE TUFTS UNIVERSITY
SCHOOL OF MEDICINE PROGRAM,
WHICH DIANA PIONEERED, THE
CITATION IS AT THE BOTTOM.
WE HAVE TAKE THEN INITIATIVE AND
TRANSLATED IT INTO OUR OWN
DIVISION OF INTRAMURAL RESEARCH
ON ITS THIRD CYCLE AND THE MONEY
IS GENEROUSLY PROVIDED FROM
DIANA'S OFFICE AND IT'S BEEN A
REALLY GREAT SUCCESS.
OUR OWN VERSION OF THAT AWARD IS
OPEN TO ALL OF OUR ASSISTANT
CLINICAL INVESTIGATORS,
POSTDOCTORAL FELLOWS AND
RESEARCH FELLOWS AND CLINICAL
FELLOWS REGARDLESS OF SEX AND
GENDER.
THESE ARE SMALL AMOUNTS OF
MONEY, UP TO 25,000 DOLLARS FOR
OUTSTANDING ORIGINAL RESEARCH
PROPOSALS.
REALLY TO GIVE THEM AN
OPPORTUNITY FOR A ONE-YEAR
SEMI--INDEPENDENT RESEARCH
PROJECT.
AND IMPORTANTLY, THESE ARE
PROJECTS THEY ARE NOT CURRENTLY
DOING IN THEIR OWN LAB.
THEY ARE REALLY PROJECTS THAT
THEY CAN SEE, THEY WANT TO SEE
IN ORDER TO TAKE AND USE LATER.
OR APPLY FOR UP TO 2000 DOLLARS
FOR MEETING PARTICIPATION,
TRAINING OPPORTUNITIES OR
PROFESSIONAL DEVELOPMENT
OPPORTUNITIES.
AND THIS YEAR, WE WERE FORTUNATE
AND GOT 30 APPLICATIONS AND WE
SPLIT 4 CLINICAL, 30 BASIC
SCIENCE AND 3 EPIDEMIOLOGICAL.
23 AWARDS UP TO A TOTAL OF HALF
MILLION DOLLARS.
AND THE AMOUNT OF MONEY MAY SEEM
SMALL PER AWARD BUT THE VALUE
THAT IS PROVIDED IN HAVING
TRAINEES RIGHT FROM THESE POTS
OF MONEY, THE PEOPLE REALLY --
AS YOU SEE, WE HAVE A NUMBER OF
INITIATIVES THAT HAVE -- START
WRITING FOR SMALL POTS OF MONEY.
- ITS JUST BEEN INCREDIBLE TO
WATCH THE IDEAS THAT ARE COMING
OUT OF OUR TRAINEES AND OUR
AREAS FOR SMALL PROJECTS TO SEEK
THEIR OWN CAREERS.
ABOUT 10 YEARS OR SO WHEN WE HAD
OUR BLUE RIBBON PANEL REPORT FOR
THE DIVISION OF INTRAMURAL
RESEARCH, WHICH ALLOWED US TO
REORGANIZE, ONE OF THE
SUGGESTIONS FROM THAT, WAS TO
ESTABLISH NICHD SCIENTIFIC
DIRECTOR AWARDS.
AND NEXT SLIDE.
WE HAVE DONE THAT THREE TIMES
OVER THE INTERVENING 10 YEARS
AND THEN THIS YEAR I WAS
FORTUNATE ENOUGH TO USE MONEY WE
HAD LEFT FROM THE SCIENTIFIC
DIRECTORS RESEARCH TO RESTAB
THAT.
AND FOR A MUM OF ABOUT 4 MILLION
DOLLARS, WE WERE ABLE TO FUND
NINE OF THE APPLICATIONS THAT
WERE SUBMITTED AND THESE ARE
MODIFIED R21 MECHANISM.
AND THESE ARE JUST RECIPIENTS
THAT WON THE AWARDS THIS YEAR.
THEY ARE 50% OF OUR
INVESTIGATORS APPLIED THAT WERE
AWARDED.
71% OF OUR TENURE-TRACK
INVESTIGATORS WERE AWARDED.
70% OF OUR SENIOR INVESTIGATORS
AND 80% OF OUR WOMEN APPLICANTS
WERE ALSO AWARDED.
THESE ARE ALSO GREAT
OPPORTUNITIES FOR, IF YOU HAVE
TO KEEP IN MIND THE DIVISION OF
INTRAMURAL RESEARCH HAS A VERY,
VERY BROAD SCIENCE.
AND WE REALLY PUT THE EMPHASIS
ON TRYING TO MAKE LABSES REACH
OUT TO LABS AND TYPICALLY DON'T
INTERACT.
HAVING EXISTING COLLABORATIONS
AND PROVIDES THEIR TRAININGS
WITH NOVEL AND OPPORTUNITIES TO
EITHER LEARN NEW TECHNIQUES OR
ASK QUESTIONS THAT ARE SO UNIQUE
TO EARTH LAB THAT BRIDGE BOTH
BASIC AND CLINICAL RESEARCH.
AND AS I SAID, THERE HAS BEEN
REALLY GREAT ENTHUSIASM IN
APPLYING FOR THESE AWARDS.
SO, ONE OF OUR JEWELS IN OUR
CROWN IS OUR OFFICE OF
EDUCATION.
AND THAT'S RUN BY ERAN WALSH.
AND SHE WAS OUR DEPUTY FOR A
WHILE AND HAS TAKEN ON THE ROLE
OF DIRECTOR.
AND SHE WORKED VERY, VERY HARD
TO EXPAND THE COVERAGE AND
OPPORTUNITIES PROVIDED TO ALL OF
OUR TRAINEES.
AND I'M NOT GOING TO SHOW YOU
EVERYTHING THAT SHE DOES BUT
HIGHLIGHT SOME OF THE THINGS WE
HAVE INTRODUCED IN THE LAST
COUPLE OF YEARS.
THE KEY SCIENTISTS TO PROVIDE AS
MANY PUBLIC SPEAKING AND
TEACHING OPPORTUNITIES THAT WE
CAN.
WE GIVE INDIVIDUAL COACHING
OPPORTUNITIES AND TEACH TRAINEES
HOW TO DO ELEVATOR SPEECHES,
SYLLABUS AND CURRICULUM
DEVELOPMENT AT THE UNIVERSITY OF
MARYLAND.
WE HAVE MANY, MANY PUBLISHING
OPPORTUNITIES.
WE HAVE WORKSHOPS.
ONE OF OUR GRANTS WORKSHOP HAS
JUST ENDED AND WE HELPED GUIDE
NIH SUBMISSIONS FROM K99s
AUGUST THE WAY TO EXTERNAL
FUNDING.
WE DO MOCK STUDY SECTIONS.
AND THEN WE ALSO DO A LARGE
AMOUNT OF CAREER GUIDANCE HELP
INCLUDING JOB INTERVIEW
PREPARATION AND NETWORKING AND
SO ON AND SO FORTH.
AND THIS HAS JUST GAINED A LOT
OF TRACTION IN THE LAST YEAR OR
SO WHERE ROOTS BECOME A REAL
FIXTURE IN OUR TRAINING WITH THE
EXISTENCE OF THE DIR.
HERE IS SOME OF THE KEY
ACTIVITIES IN THE NEXT SLIDE
THAT WE HAVE DONE.
AND THIS IS WHAT WE HAVE DONE
THIS SUMMER.
OUR POSTBAC SEMINAR SERIES WHICH
HAS ALLOWED CAREER EXPLORATION,
WHICH BROUGHT IN TRAINEES WITH
THE Q&A SESSION.
WE HAD GRANT WRITING COURSE.
WE HAVE CONSULTING SESSIONS AND
WE BRING IN INDUSTRY CAREERS AND
SPEAKERS AND THEN THREE MINUTE
TALK, WHICH I'LL TALK ABOUT IN A
SECOND.
BUT WRITING WORKSHOPS AND THEY
ARE INCREDIBLY WELL ATTENDED.
AND I THINK REALLY ARE SUCCESS
IS REALLY A CREDIT TO ERAN WALSH
LEADERSHIP.
NEXT SLIDE.
WE HAVE NICHD INTRAMURAL
RESEARCH FELLOWSHIP AWARD NOW IN
ITS 7th APPLICATION CYCLE.
IT'S A GRANT WRITING OPPORTUNITY
FOR OUR POSTDOCS AND CLINICAL
FELLOWS WHO ARE IN THEIR SECOND
OR THIRD YEAR OF TRAINING.
THIS IS FOR APPROXIMATELY 25,000
DOLLARS.
THEY CAN USE THAT TO PURCHASE
EQUIPMENT OR REAGENTS FOR THE
LAB TO DO EXPERIMENTS THAT THEY
ARE NOT CAPABLE OF DOING AT THE
MOMENT.
THEY CAN USE IT FOR TRAVELING TO
A MEETING, TRAINING
OPPORTUNITIES OR THEY CAN USE IT
FOR STIPE INDTOWARDS RECRUITING
A YOUNG TRAINER.
THIS IS APPLICATION REVIEW THAT
IS REVIEWED BY COMMITTEE MADE OF
NICHD INVESTIGATORS, FORMER
POSTDOCTORAL GRANTEES AND
TENURE-TRACK -- AND STUDY
SECTION PROCEDURES SIMILAR TO
THE SERIES AWARD.
AND THE SCORING CRITERIA IS
ACROSS MULTIPLE PARAMETERS,
FELLOWSHIP APPLICANT SPONSORS
AND COLLABORATORS.
THE TRAINING OPPORTUNITY IMPLIES
WHAT ARE THE POTENTIAL FOR
FELLOWSHIP AND WHAT IS THE
INSTITUTIONAL ENVIRONMENT AND
HOW IS IT GOING TO SUPPORT THEIR
COMMITMENT TO TRAINING?
AND THIS YEAR, WE HAD FIVE
AWARDEES ACROSS A VARIETY OF
DIFFERENT LABS AND SCIENCES AND
REMARKABLY ALL THE APPLICATIONS
THAT WE RECEIVED 65% OF THEM
SCORED IN THE UNDERSTANDING OF
EXCELLENT RANGE.
AND YOU'RE GETTING TO THE POINT
OF GETTING THE AWARD IS SECONDED
TO THE PROCESS THAT GOT THEM TO
SUBMIT THAT APPLICATION.
AND WORKED HARD WITH EACH OF
THEM TO HELP THEM FRAME HOW YOU
WOULD WRITE UP THAT PROPOSAL.
SO IT'S A GREAT ACCOMPLISHMENT.
ONE OF THE REALLY FUN THINGS
THAT WE HAVE DONE THIS YEAR --
NEXT SLIDE.
IS WE WON OR WHEN I SAY WE, JONG
PARK, WON OUR 3 MINUTE TALK
SCIENTIFIC COMMUNICATION
TRAINING PROGRAM.
SO THIS IS A PROGRAM THAT WAS
STARTED BY HEALTH 10 YEARS AGO
AND ORIGINALLY IT WAS JUST FROM
FELLOWS FROM CHILD HEALTH, OR
THE NATIONAL LIBRARY OF MEDICINE
OR HUMAN GENOMIC RESEARCH
INSTITUTE.
IT'S NOW BECOME SO SUCCESSFUL
OVER THE LAST DECADE IT
ENCOMPASSES FROM ICs.
OVER THE COURSE OF 3-4 MONTHS
THEY LEARN AND ALLOW LOUD TO
HAVE ONE SLIDE AND THREE MINUTES
TO CONVEY THE IMPORTANCE OF
THEIR PROJECT.
AND THE WE BRING IN A
PROFESSIONAL SPEECH AND TRAINER,
THEY GO THROUGH SEVERAL
OBSERVATIONS INTERNALLY AND
EXTERNALLY AND DO ELEVATOR TALK.
WE TOOK THEM THROUGH THEIR PACES
AND THEN EACH IC ADVANCES THEIR
WINNER AND SO IN THE LAST 5 OR 6
WEEKS, JOHN PARK WHO IS TRAINING
IN BRAD WEINSTEIN'S LAB AND
PRESENTED ON A GILL MODEL OF
LUNG GAS EXCHANGE BLOOD
VASCULATURE AND ECSTATIC FOR HIM
TO WIN.
IT WAS JUST A REALLY REMARKABLE
ACHIEVEMENT.
FOR THEM TO GET TO THAT POINT OF
THE FINAL THEY HAD GONE THROUGH
BETWEEN SOMETHING LIKE 6 OR 8
ROUNDS OF PRESENTATIONS TO GET
THERE.
SO IT'S A FANTASTIC -- AND
REALLY FUN OPPORTUNITY.
THERE WAS ABOUT A DOZEN TRAINEE
THAT IS COMPETED IN THE FINAL
AND OVER THE COURSE OF ONE HOUR,
YOU HEAR A DOZEN TALKS THAT ARE
3 MINUTES LONG AND THE ENERGY
AND THE EFFORT THEY PUT INTO
THEIR ONE SLIDE IS JUST REALLY
INSPIRING.
WE HAVE A NUMBER OF OTHER
FUNDING OPPORTUNITIES THAT ARE
NOT REALLY SPECIFIC TO NICHD
FELLOWS BUT WE PLACED A LARGE
EMPHASIS IN THE LAST YEAR ON
HAVING OUR FELLOWS LOOK FOR
EXTERNAL MONEY AND A NUMBER OF
THESE WE HAVE BEEN --
HISTORICALLY BEEN SUCCESSFUL
GETTING MONEY FROM THE NIGMS
POSTDOCTORAL RESEARCH TRAINING
AWARD.
TABLET USED TO BE CALLED A PRAT
FELLOWSHIP AND MY OWN LAB HAD
HALF A DOZEN OF THOSE OVER THE
LAST 10-15 YEARS.
I'M EXCITED SO WE HAVE TWO NEW
AWARDEES IN THAT PROGRAM FROM
PETER'S LAB AND BRAD WEINSTEIN'S
LAB.
WE CURRENTLY HAVE FOUR AWARDEES.
ONE IS DEPARTING FOR THEIR PHASE
LATER THIS FALL AND MANY
INSTITUTES ACROSS THE NIH
REALIZED THE VALUE OF THEIR
TRAINEES APPLY FOR K99s.
THERE IS A LOT OF ENERGY PUT
INTO HELPING THEM NAVIGATE THAT
PROCESS AND I'M HAPPY TO SAY
THEY ARE SUCCESSFUL IN THAT.
THERE ARE ALSO SMALL SEED
GRANTS.
THESE ARE VIRTUAL INSTITUTES
THAT ARE SET UP ACROSS MULTIPLE
INSTITUTES IN THE INTRAMURAL
PROGRAM.
AND TWO OF THE MOST SUCCESSFUL
ONES HAVE BEEN THE CENTER FOR
COMPULSIVE BEHAVIORS DISORDERS
AND VERON KALLAL VARES DOES A
SEED AWARD SO THEN THEY DO
POSTDOCTORAL FELLOWSHIP AND THIS
YEAR WE HAD FOUR.
-- BEHAVIORAL RESEARCH
FOUNDATION YOUNG INVESTIGATOR
GRANT.
WE ARE PUTTING A LOT OF EFFORT
IN GIVING OPPORTUNITIES FOR
GRANT WRITING TRAINING.
THERE IS WHAT WE CALL FAIR
AWARD.
AN OPPORTUNITY FOR ALL
POSTDOCTORAL FELLOWS AND
GRADUATE STUDENTS TO WRITE FOR A
1500 DOLLAR TRAVEL GRANT.
WE HAVE HISTORICALLY DONE VERY,
VERY WELL WITH THESE AWARDS.
AND THIS YEAR IS NO EXCEPTION.
WE HAVE AGAIN OVER A DOZEN OF
THESE AWARDS WERE GIVEN TO OUR
TRAINEES AND THEY CAN USE IT FOR
NATIONAL AND INTERNATIONAL
TRAVEL.
IT WAS REALLY, REALLY GREAT
SUCCESS STORY.
AND THEN FINALLY, NEXT SLIDE, WE
HAD AN NIH POSTBAC POSTER DAY
AND THIS ALMOST HAD A CARNIVAL
ATMOSPHERE TO IT.
IT WAS THE FIRST TIME THAT OUR
POSTBACS HAVE BEEN BACK IN
PERSON, ABLE TO PRESENT THEIR
DATA.
EVERYBODY TAKES THAT CREDIBLY
SERIOUSLY.
CHILD HEALTH HAD ALMOST ON THE
ORDER OF 60 OR 70 POSTBAC
TRAINEES PRESENT.
I MANAGED TO READ EVERY POSTER
AND TALK TO EVERY POSTBAC.
BUT I'M SUPER EXCITED TO TELL
YOU THAT WE SCORED A NUMBER OF
OUR CANDIDATES THEY GET REVIEWED
AND SCORED BY THREE ANONYMOUS
REVIEWERS THAT GO AROUND ALL THE
POSTERS AND ALMOST 20 OF OUR
YOUNG POSTBACS CAME IN THE TOP
20% OVERALL OF THE PRESENTATION.
SO THAT WAS A REALLY GREAT
ACHIEVEMENT FOR US.
SO AS I SAID EARLIER ON, WE HAVE
ABOUT 14 GRADUATE STUDENTS
INSIDE THE DI R AND IN THE
INTRAMURAL PROGRAM IN GENERAL,
WE HAVE A NUMBER OF GRADUATE
PARTNERSHIP PROGRAMS.
THESE ARE PROGRAMS THAT REEITHER
HAVE INSTITUTIONAL AND OFFICIAL
INTERACTIONS WITH WHERE WE TAKE
GRADUATE STUDENTS, TRAIN THEM IN
OUR LABS SO THEY DO DIDACTIC
TRAINING AT THEIR POST
UNIVERSITY THEY COME TO THE NIH
TO DOT RESEARCH COMPONENT AND
TYPICALLY, WE HAD ANYTHING LIKE
BETWEEN TWO AND A HALF DOZEN
GRADUATE STUDENTS INSIDE THE IC
IN TOTAL.
I BECAME AND SCIENTIFIC
DIRECTOR, A PROGRAM THAT I WAS
AN ORIGINATOR OF THE CAMBRIDGE
PROGRAM, ONE OF THE FOUNDING
MEMBERS OF THAT, I FEEL REALLY
PASSIONATE ABOUT HAVING GRADUATE
STUDENTS IN OUR LABS.
SO ONE OF MY INITIAL EARLY HOPES
WAS TO TRY AND INCREASE THE
NUMBER OF GBP STUDENTS WE HAVE
IN OUR INSTITUTE.
AND IN TALKING TO THE
INVESTIGATORS, IT BECAME CLEAR
THE REASON THAT WE HAD THE
NUMBER WE HAD, IS BECAUSE PEOPLE
DIDN'T UNDERSTAND HOW TO
NAVIGATE ALL THE TUITION,
FUNDING, FEES, TRAVEL, SOME OF
THEM -- WE HAD PARTNERSHIPS WITH
CHILE AND CHINESE UNIVERSITY
HONG KONG, THE BROWN PROGRAM,
NEUROSCIENCE PROGRAM.
SO REALLY DIVERSE PROGRAMS AND
EACH HAVE THEIR OWN SETS OF
RULES.
AND THEN YOU GET THE SURPRISE
BILL HALFWAY THROUGH THAT SAID,
YOU LOST 40,000 DOLLARS FOR
THEIR TUITION AND BENCH FEES.
SO THAT WAS TURNED A LOT OF OUR
INVESTIGATORS OFF.
SO TRYING TO FIND OUT HOW TO GET
GRADUATE STUDENTS.
SO ONE OF THE VERY FIRST
THINGSICS I DID WAS TO TAKE THAT
AND PAY THEM IN A WAY TO
CENTRALLY FUND ALL THE TUITION
AND FEES FOR ALL OF OUR GRADUATE
STUDENTS SO THE PI NOW IS ONLY
RESPONSIBLE FOR THE PERSONNEL
COSTS.
AND THEN THE SECOND INITIATIVE I
PUT IN PLACE WAS FOR US TO FUND
FULLY ALL OF THE COSTS FOR THE
GRADUATE PROGRAMS AND GRADUATE
STUDENTS.
WE HAVE FOUR TOTAL AND HOPEFULLY
A ROLLING PROGRAM OF 4 GRADUATE
STUDENTS FUNDED ESSENTIALLY.
AND HOPEFULLY, THAT IS GOING TO
INCREASE OUR AWARENESS OF THESE
PROGRAMS AND REMOVE ANY
IMPEDIMENT.
WE HAD SOMETHING ON THE ORDER OF
OVER 60 SUMMER INTERNS.
34 FUNDED BY MY OFFICE AND 12 BY
INDIVIDUAL LABS AND THE
REMAINDER FUNDED BY THE OITE, AN
ESSENTIAL OFFICE OF EDUCATION.
THE VAST MAJORITY OF STUDENTS
ARE UNDERGRADUATES.
OCCASIONALLY FROM HIGH SCHOOL OR
GRADUATE SCHOOLS.
IT WAS FANTASTIC TO HAVE SUMMER
STUDENTS BACK ON CAMPUS.
FOR THE FIRST TIME WE HAD 4
SUMMER STUDENTS, MORE THAN
ANYBODY HAS IN ONE LAB.
IT'S INCREDIBLY BUSY TIME.
AND THEN NEXT SLIDE.
WE STARTED FOR THE FIRST YEAR A
NEW VIRTUAL AND SUMMER
INTERNSHIP PROGRAM.
AND THIS IS THE WORK OF GIGY
STARS AND FILIP ADAMS AND DURING
COVID WHEN THE SUMMER PROGRAM
WAS SUSPENDED, GIGI AND OTHERS
CAME UP WITH A IDEA OF HAVING A
VIRTUAL PROGRAM.
A PILOT WHERE THEY HAVE HALF A
DOZEN TRAINEES THAT ARE ALL OVER
THE COUNTRY THAT THEY WOULD DIAL
IN ON ZOOM IN THE MORNING AND
RECEIVE TWO OR THREE HOURS OF --
TRAINING AND RNA SEQUENCING AND
THEN GIVE A TASK TO DATA MINE
AND COME BACK AND REPORT THE
NEXT MORNING.
AND IT WAS A RUNAWAY SUCCESS FOR
A HALF DOZEN STUDENTS IN THE
FIRST COUPLE OF YEARS.
WE DECIDED WE WOULD MAKE THIS
OFFICIAL AND PROGRAM FOR OUR
DIVISION.
WE FUNDED 50 OF THEM THROUGH MY
OFFICE AND THROUGH OITE.
AND THEY HAVE DONE AN INCREDIBLE
JOB AT STARTING THIS.
THIS IS REALLY IMPORTANT BECAUSE
A LOT OF SUMMER STUDENTS CANNOT
AFFORD TO COME TO BETHESDA AND
LIVE AND WORK IN THE SUMMER
PROGRAM.
AND ALSO, THE APPLICANT POOL IS
MASSIVE FOR THE SUMMER PROGRAM.
SO ONLY A VERY SMALL FRACTION OF
PEOPLE THAT APPLY CAN ACTUALLY
ATTEND IN PERSON.
SO THIS IS A WAY OF BRINGING IN
DISADVANTAGED OR PEOPLE WHO
DON'T HAVE THE ABILITY TO STAY
FOR SHORT PERCEIVED IN BETHESDA.
WE ARE TRYING TO EXPAND ACROSS
DIFFERENT INSTITUTES.
WE HAVE BUY IN AND WE ARE HOPING
TO EXPAND OVER THE NEXT 2-3
YEARS.
AND THEN THE NEXT SLIDE I WANT
TOY SHOULD YOU PICTURES FROM OUR
POSTER SESSION.
THERE IS NOTHING REALLY TO SHOW
YOU HERE OTHER THAN PEOPLE
HAVING A GOOD TIME PRESENTING
SCIENCE.
AND WE HAD A LARGE NUMBER OF
SUMMER EVENTS.
I'VE NEVER BEEN TO A SUMMER
PROGRAM POSTER WHERE SO MANY
PEOPLE'S PARENTS AND
GRANDPARENTS WERE THERE.
I THINK I HAVE SHAKEN HAND WITH
MORE GRANDPARENTS IN THE LAST
TWO OR THREE WEEKS THAN I EVER
HAD.
AND WE HAD LUNCHEONS AND SUMMER
EVENTS TO GET THE LIFE IN THE
LAD AND RECHARGE AGAIN.
NEXT SLIDE.
AND WE ALSO HAVE A DEVELOPING
TALENT SCHOLARS PROGRAM WHICH
ORIGINALLY USED TO BE RAN
CENTRALLY THROUGH THE NIH AND
TURNED BACK TO EACH OF THE
ICs.
WE HAVE THREE NEW SCHOLARS FOR
FY23.
WE HAVE HAD 30 OVER THE LAST 10
YEARS.
WE ALSO STARTED GIVING
RECRUITMENT INCENTIVE AWARDS FOR
TRAINEES THAT APPLIED TO OUR
LABS.
WE ARE CURRENTLY FUNDING SIX
TRAINEES AND NEXT SLIDE.
AND THEN FINALLY WE HAVE SEVERAL
INITIATIVES WITH HOWARD
UNIVERSITY WHICH THE LOCAL
UNIVERSITY IN THE DISTRICT.
AND THIS WAS REALLY STARTED BY
NOT ONLY ERAN BUT THE OFFICE OF
EDUCATION IN NINDS.
WE WORKED WITH THE COLLEGE OF
ARTS AND SCIENCES, BIOLOGY ARTS
PROGRAM TO SORT OF FUNCTION AS A
SECONDARY RESEARCH MENTOR.
WE HAVE FIVE SOPHOMORE STUDENTS
CAME IN THE SPRING OF THIS YEAR.
THEY WILL COMPLETE AND GRADUATE
EARLIER ON THIS SUMMER.
AND THEN WE HAVE OBSTETRICS
GYNECOLOGY RESEARCH MENTORING
PROGRAM WITH THE COLLEGE OF
MEDICINE.
AND THEN WE HAVE RESIDENCY
RESEARCH MENTORING AND LECTURES
WHERE MANY OF OUR INVESTIGATORS
AND SENIOR INVESTIGATORS ARE
GUEST LECTURERS IN THOSE
PROGRAMS.
WE ARE TRYING TO LOOK AT WAYS WE
CAN EXPAND THESE INTERACTIONS
WITH LOCAL UNIVERSITIES AND
THERE ARE A NUMBER OF
UNIVERSITIES THAT REALLY WE HAVE
NOT TAPPED INTO INTERACTIONS
WITH AND DIANE AND I MET WITH
THE UNIVERSITY OF MARYLAND TO
TALK ABOUT OPPORTUNITIES AND WE
HOPE THAT WE ARE GOING TO CARRY
ON DOING MUCH, MUCH MORE OF THAT
IN THE FUTURE.
SO I AM GOING TO STOP THERE AND
I'LL TAKE ANY QUESTIONS THAT YOU
MAY HAVE.
>>SPEAK INTO THE MIC AND
INTRODUCE YOURSELF.
>>HI, YVONNE MALDONADO STANFORD
UNIVERSITY.
THANK YOU FOR THE PRESENTATION.
REALLY REMARKABLE TO SEE THE
LIST OF TRAINEES AT ALL LEVELS
THAT YOU'RE BRINGING HERE AND
ALSO DOING SOME MORE VIRTUAL
WORK.
AND I'M WONDERING IF THERE ARE
SOME OPPORTUNITIES FOR THE
PURELY VIRTUAL TRAINEES TO COME
IN FOR MAYBE ONE VISIT TO GET TO
PRESENT THEIR POSTER?
I SEE SOME OF THOSE WERE BROUGHT
IN FOR MAYBE THE FINAL DAY OR --
>>THAT'S A REALLY INTERESTING
POINT YOU BRING UP BECAUSE THESE
STUDENTS ARE ALL OVER THE
UNIVERSITY.
AND MANY WANTED TO COME TO
POSTER DAY.
IT WAS GREAT TO ALLOW THEM TO
MAKE A POSTER AND PRESENT THE
IDEA.
SO WE DON'T WANT THAT TO STAND
ALONE ON ITS OWN.
WE WANT TO ENGULF OUR ENTIRE
SUMMER PROGRAM.
IT STARTED FROM A GRASSROOTS
IDEA AND I THINK AS I SAID, WE
FUND 15.
WE WILL KEEP EXPANDING THAT
MOVING FORWARD AND YES, BRINGING
THEM ON TO CAMPUS AND TRAVELING
TO CAMPUS TO PRESENT AND MEET
OTHER TRAINEES FOR THE SUMMER
PROGRAM, THAT'S DEFINITELY -- WE
WERE ABLE TO DO THAT FOR A
NUMBER OF THEM THIS YEAR.
>>THANK YOU FOR THAT
PRESENTATION.
THAT WAS FANTASTIC.
WOULD YOU SPEAK A LITTLE BIT
MORE ABOUT THE EDUCATIONAL STAGE
OF THE TRAIN THESE COME?
ARE YOU INVITING HIGH SCHOOL
STUDENTS?
OR JUST COLLEGEAT?
WHAT STAGE ARE YOU THINKING
ABOUT EARLIER IN THE PIPELINE?
>>SPECIFICALLY FOR THE SUMMER
PROGRAM?
>>THE SUMMER PROGRAM.
>>SO, THE VAST MAJORITY OF
SUMMER PROGRAMS ARE
UNDERGRADUATE STUDENTS.
THAT'S HISTORICALLY HOW THE
SUMMER PROGRAM HAS BEEN RUN.
NOT JUST -- THE ENTIRE NIH'S
SUMMER PROGRAM.
IT IS OPEN ALSO TO HIGH SCHOOL
STUDENTS.
THERETO IS NOW AN AGE LIMITATION
WHERE THEY HAVE TO BE OVER 18
AND THIS YEAR WE HAD 6 OR 8 FROM
HIGH SCHOOL.
WE HAVE A COUPLE OF
UNDERGRADUATES THAT CAME BACK TO
US THAT WE HAD TO -- SENIOR
UNDERGRADUATES.
THE VAST MAJORITY OF THESE
STUDENTS ARE IN THE
UNDERGRADUATE DEGREES.
>>I DON'T KNOW WHETHER THIS IS
AN OPPORTUNITY TO REALLY THINK
ABOUT EARLIER IN THE PIPELINE
BECAUSE THAT'S WHEN WE LOSE A
LOT OF STUDENTS FROM DIVERSE
BACKGROUNDS.
>>SO THOSE RULES ARE LARGELY
PUT IN PLACE BY THE LARGER
NIH -- 10 YEARS AGO WE COULD
HAVE HIGH SCHOOL STUDENTS COME
IN WHO WERE SOPHOMORES, JUNIORS
AND SENIORS.
AND THE PROGRAM HAS BEEN LIMITED
NOW TO PEOPLE WHO ARE PROBABLY
EITHER GOING INTO THEIR SENIOR
YEAR OR LEAVING THEIR SENIOR
YEAR TO GO INTO UNIVERSITIES.
I USED TO RUN THE SCIENCE FAIR
WITH MY KIDS AND MIDDLE SCHOOL
AND HIGH SCHOOL AND A LOT OF US
DO THAT ALREADY.
A LOT OF OUR SCIENTISTS
VOLUNTEER TO GO OUT TO SCHOOLS
AND THINGS LIKE THAT.
THAT'S AN OPPORTUNITY THAT WE
REALLY WANT TO CAPITALIZE ON.
THERE IS INCREDIBLE -- I MEAN IN
THIS AREA, WITHIN THE AREA,
THERE ARE SO MANY OPPORTUNITIES
FOR US TO GET AT K-12
OPPORTUNITY.
>>ONE OTHER COMMENT TO
CONSIDER.
YOU COULD ALSO THINK ABOUT THE
TRAINEES WHO HAVE BEEN THERE
TAKING THEM BACK TO THEIR HIGH
SCHOOLS AND THEIR JUNIOR HIGHS
AND ACTUAL GIVING THEM A
PLATFORM TO PRESENT THEIR
SCIENCE AND TALK ABOUT THEIR
EXPERIENCES.
>>A GREAT IDEA.
THAT'S A REALLY GREAT IDEA.
THANK YOU.
YES?
>>HI, MORE LACES MILLER.
SO YOU HAVE A REALLY GREAT -- OR
YOU FOCUSED A LOT ON THE GRANT
WRITING EDUCATION THAT YOU LAID
OUT.
I'M WONDERING ABOUT GRANT
WRITING EDUCATION IS FOCUSED
EXCLUSIVELY ON THE NIH OR
WHETHER IT'S MORE DIVERSE IN ITS
GRANT WRITING?
>>RIGHT.
AND GREAT QUESTION.
AND FROM A PRACTICAL POINT OF
VIEW, A LOT OF IT IS FOCUSED ON
K99 AT THE MOMENT.
AND -- OR NRC EQUIVALENT KIND OF
GRANTS.
SO CHILD HEALTH HAS ITS OWN
FLAVOR INTRAMURAL AWARD AND MANY
OF US -- I HAVE AN ADJUNCT
RELATIONSHIP WITH NINDS WHICH
ALLOWS MY TRAINEES TO WRITE FOR
NINDS AWARD.
SO FOR THE MOST PART, THESE ARE
NIH AWARDS.
NOW, SAYING THAT, WE DO WRITE
FOR SMALL FOUNDATION AWARDS AND
HISTORICALLY THE INTRAMURAL
PROGRAM HAS NOT BEEN SUCCESSFUL
IN GETTING SMALL PRIDE
FOUNDATION AWARDS BECAUSE FIRST
OF ALL, WE ARE NOT ALLOWED TO
TAKE THAT MONEY.
NOW WE ARE.
IT'S A LITTLE MORE COMPLICATED
IN HOW TO NAVIGATE THAT.
BUT THE PRAT FELLOWSHIP, WHICH
IS ANOTHER NIGMS AWARD AND WE
HAVE A WEBSITE ON OUR INTRAMURAL
WEBSITE FOR OUR FELLOWS THAT HAS
OVER 80 GRANT WRITING
OPPORTUNITIES OVER THE YEAR.
IT TELLS YOU ALL THE DEADLINES,
ALL OF WHAT IS EXPECTED AND WHO
TO CONTACT TO DO THAT AND HOW TO
NAVIGATE THAT.
SO WE'RE TRYING TO BUILD A
COMPENDIUM OF ALL THE GRANT
WRITING TUBES BOTH INSIDE AND
OUTSIDE OF THE NIH THAT WE CAN.
IT'S WORTH REPEATING.
FROM MY POINT OF VIEW, IT'S NOT
THE MONEY THAT IS IMPORTANT.
OF COURSE IT IS IMPORTANT AT A
CERTAIN LEVEL BUT THE WRITING
OPPORTUNITY AND THE EXPERIENCE
TO WORK OUT HOW YOU GET
SUCCESSFUL GRANT FUNDED IS THE
OPPORTUNITY THAT I THINK WE ARE
TRYING TO CAPITALIZE ON.
>>ABSOLUTELY.
WHICH IS WHY I WAS CURIOUS AT
WHETHER IT WAS FOCUSED ON THE
NIH BECAUSE AS WE ALL KNOW,
WRITING FOR THE NIH IS VERY
DIFFERENT THAN WHITE WRITING FOR
THE V.A., DOD, SMALL
FOUNDATIONS.
>>THANK YOU FOR THAT COMMENT.
>>[ INDISCERNIBLE ]
I THINK IT WILL BE GREAT TO
BRING K12 INSTRUCTORS TEACHERS
HERE SO THEY COULD GO BACK AND
HELP TO -- WE HAVE FEWER -- THIS
SUMMER AND ARE [ INAUDIBLE ]
MY QUESTION IS ALSO, ARE YOU
PLANNING TO TRACK THEM OVER TIME
TO SEE WHERE --
>>YES.
YOU KNOW, ALL OF THESE THINGS
ARE -- SO HINDSIGHT IT WILL SEEM
OBVIOUS BUT A LOT ARE NOT BEING
DONE.
SO WE ARE REALLY PAYING
ATTENTION TO WHERE ALL OF OUR
TRAINEES GO.
AND ERAN, THIS WAS UNBEKNOWNST
TO ME.
WE HAVE A PANEL EVERY -- TWICE A
YEAR, WHERE SHE BRINGS TRAINEES
BACK.
NO NOT JUST PEOPLE WHO HAVE BEEN
SUCCESSFUL IN SCIENCE WHO HAVE
GONE ON TO DIFFERENT WALKS OF
LIFE.
AND BRINGING PEOPLE FROM
JOURNALISM OR WHATEVER, AND
BRINGING THEM BACK.
SO LETTING OUR TRAINEES SEE THIS
IS THE SUCCESS OF THE -- FACE OF
SUCCESS OF OUR TRAINEES.
IT'S NOT ALL ABOUT THAT YOU'RE
GOING TO BECOME A PRINCIPLE
INVESTIGATOR.
SO WE ARE TRYING VERY HARD TO
MONITOR WHERE EVERYBODY IS AND
CAPTURE THAT INFORMATION.
>>CHRIS, THERE IS A QUESTION ON
ZOOM FROM DR. JABS.
>>I HAVE A QUESTION.
SINCE THIS INTRAMURAL TRAINING
AND TRAINING IS IMPORTANT IN ANY
FORUM, I'M WONDERING IS THERE
INTENTION OR GOALS TO MAKE
INTRAMURAL TRAINING IN SOME WAY
DIFFERENT FROM EXTRAMURAL
TRAINING?
OR IS IT THE SAME?
AND HAVE YOU SEEN A DIFFERENT
TYPE OF CANDIDATE APPLYING FOR
THE INTRAMURAL TRAINING VERSUS
THE EXTRAMURAL?
AND I GUESS YOU MENTIONED THAT
YOU ARE TRACKING THESE
CANDIDATES TO SEE IF THE OUTCOME
IS DIFFERENT, BECAUSE WE HAVE
SEEN A LOT OF POSTDOCTORAL
TRAINEES NOW GOING ON TO
INDUSTRY AS OPPOSED TO
ACADEMICS.
AND MAYBE NIH IS STILL A
DIFFERENT ENVIRONMENT FOR
RESEARCH.
>>THANK YOU FOR THAT.
REALLY I THINK WE ALL OVER THE
LAST FEW YEARS ARE SENSITIVE TO
THE FALLING NUMBER OF
POSTDOCTORAL FELLOWS LOOKING FOR
POSITIONS.
I WAS HAVING A CONVERSATION WITH
OUR TENURE-TRACK INVESTIGATOR.
WE HAVE 40 LESS POSTDOCS THAN
CURRENTLY IN THE DIR THAN WE HAD
AT THE BEGINNING OF COVID.
AND THAT'S NOT A RANDOM DROP.
SOME THINGS CHANGING IN OUR
OPPORTUNITIES FOR POSTDOCTORAL
FELLOWS.
AND I DON'T SEE -- I DON'T THINK
ABOUT DISTINCTION TO GET BACK TO
YOUR FIRST PART OF YOUR
QUESTION.
I DON'T SEE A DISTINCTION
BETWEEN THE OPPORTUNITIES FOR
TRAINING OPPORTUNITIES FOR
FELLOWS INTRAMURALLY VERSUS
EXTRAMURALLY.
WE ARE TRAINING SCIENTISTS TO BE
SUCCESSFUL EITHER WHETHER THEY
STAY IN THE INTRAMURAL PROGRAM
OR TRYING TO MAKE THEM
COMPETITIVE TO BE IN THE OUTSIDE
WORLD.
AND PART OF THE PROGRAM DOESN'T
ALLOW THESE TRAINEES TO STAY
MUCH LONGER THAN FIVE YEARS AND
THEY HAVE TO LOOK EXTERNALLY.
SO WE HAVE TO BE TRAINING OUR
STUDENTS AND POSTDOCS TO THE
SAME GOALS AS YOU WOULD IN THE
EXTRAMURAL PROGRAM.
DO WE SEE DIFFERENT KINDS OF
CANDIDATES.
I'M NOT SURE I CAN ANSWER THAT
QUESTION.
AS I SAID, THE NUMBER OF
APPLICANTS FOR POSTDOCS HAS
DECLINED BUT IN SPEAKING WITH
EXTRAMURAL PEOPLE, EVERYBODY IS
SORT OF FEELING THE SAME PAIN.
THERE IS DEFINITELY A CANDIDATE
POOL IS LESS.
I DON'T THINK THE INTRAMURAL
PROGRAM ATTRACTS A DIFFERENT
CANDIDATE THAT WOULD BE
ATTRACTED TO ANY EXTRAMURAL
ACADEMIC PROGRAM.
WE SEE OURSELVES PRIMARILY AS A
RESEARCH INSTITUTE THAT IS IN A
PRIVILEGED POSITION TO ALLOW US
TO TRAIN CANDIDATES TO GO BACK
OUT TO ALL SORTS OF DIFFERENT
WALKS OF LIFE.
>>IT'S WONDERFUL TO SEE THE
EFFORT YOU PUT IN TO DEVELOP THE
PIPELINE FOR YOUNG INVESTIGA
INVESTIGATORS.
MY QUESTION IS FOR THE
ESTABLISHED -- [ OFF MICROPHONE
-- PIs WITHIN THE INTRAMURAL
BRANCH.
HOW DO YOU TRACK PRODUCTIVITY
AND -- WE MEASURE FACULTY
SALARY, RECOVERY, WE MEASURE
INDIRECT COST RECOVERY PER
SQUARE FOOT OF SPACE ASSIGNED TO
THEM.
HOW DO YOU DO THAT INTRAMURALLY?
>>WELL, OF COURSE AS YOU'RE
WELL AWARE OF THE INTRAMURAL
PROGRAM IS NOT THE EXTRAMURAL
PROGRAM.
WE DON'T USE THOSE METRICS IN
MEASURING OUR SUCCESS.
EACH OF OUR INVESTIGATORS IS
REVIEWED EVERY FOUR YEARS.
AND THEY ARE REVIEWED ON A
NUMBER OF -- BASED ON A NUMBER
OF PARAMETERS.
AND THEIR PAST FOUR YEAR
PRODUCTIVITY, THEIR FUTURE FOUR
YEAR AIMS FOR THEIR PROGRAM.
THEIR MENTORING SKILLS AND THE
SUCCESS OF THEIR MENTEES.
THEIR CONTRIBUTIONS TO INSIGHT
THE INSTITUTE AS WELL AS INSIGHT
THE NIH IN GENERAL.
AND THEIR SERVICE IS A CREDIBLE
COMPONENT.
WE TAKE AN APPROACH IN TERMS OF
THE QUALITY OF SCIENCE.
OF COURSE QUALITY OF SCIENCE IS
PRIORITY NUMBER 1.
AND THAT ALLOWS IN MY MIND,
THAT'S WHAT MAKES A DIVISION OF
INTRAMURAL RESEARCH A UNIQUE
PLACE THAT ALLOWS US TO BE
DYNAMIC WHERE WE PUT THE MONEY
AND WHAT WE -- THE SCIENCE WE
SUPPORT.
SO IT'S SLIGHTLY DIFFERENT FROM
YOU LIVE AND DIE BY THE NUMBER
OF RO1s OR HOW MANY MONEY YOU
BRING INTO YOUR DEVELOPMENT.
WE DON'T THINK LIKE THAT.
WE ARE SENSITIVE THAT THIS MONEY
IS A RARE COMMODITY AND WE HAVE
TO USE IT WISELY.
OUR YOUNGER TRAINEES AND
OPPORTUNITIES AND WE TAKE AS
SERIOUSLY THE QUALITY OF OUR
INVESTIGATORS AND ALSO BRINGING
OUR TENURED TRACK INVESTIGATORS
THROUGH THE PIPELINE AND MAKING
THEM SUCCESSFUL SCIENTISTS.
IT'S TOP-TO-BOTTOM.
I DON'T KNOW IF THAT ANSWERS
YOUR PROGRAM.
>>IF I UNDERSTAND CORRECTLY,
YOUR VIRTUAL PROGRAM TOOK A DATA
SCIENCE TRAINING OPPORTUNITY
WHICH MANY OF US ARE DISCOVERING
IT'S A REAL OPPORTUNITY FOR
OUTREACH AND ENGAGEMENT AND IT'S
CHALLENGING.
AND I WAS WONDERING IF THERE IS
A CONSIDERATION POTENTIALLY FOR
ADDITIONAL PARTNERSHIPS FROM A
DATA SCIENCE PERSPECTIVE FOR
TEAMS TO CREATE USEABLE
MATERIALS AND PROGRAMS --
PEDIATRIC AND PIPELINE
OPPORTUNITY.
>>SO I HAVE BEEN THINKING LONG
AND HARD ABOUT THAT BECAUSE GIGI
TAPPED INTO SOMETHING REALLY
COOL.
SO WORKS ON SHARP 50 AMINO ACID
PROTEINS THAT ARE MIDDEN INSIDE
OUR GENES HIDDEN IN PLAIN SIGHT.
SO SMALL THAT THEY JUST GET
SCANNED THROUGH AND -- SHE'S
BEEN INCREDIBLE SUCCESSFUL
CAREER OF FINDING 50 AMINO ACID
PROTEINS AND HAVE MAJOR IMPACTS.
AND THAT IS A GNARLY GOLD MINE
FOR -- SO CURRENTLY THEY
GENERATED SOMETHING LIKE 80
UNIQUE SEQUENCES AND THEN --
IT'S THE PERFECT SITUATION FOR
SUMMER PROGRAM.
SO THAT'S NOT GOING TO WORK FOR
NEUROSCIENCE PHYSIOLOGY LAB LIKE
MY OWN.
I DON'T KNOW WHAT WE WOULD DO
VIRTUALLY.
SO I HAVE TO THINK A LITTLE
OUT-OF-THE-BOX.
WHAT COULD YOU DO THAT EXISTS
EITHER INSIDE THE NIH OR OUTSIDE
THE NIH THAT WOULD ALLOW US TO
TAP INTO AI OR MACHINE LEARNING
OR -- NIMH HAS ESTABLISHED A
MACHINE LEARNING CORE.
AND THEY DON'T QUITE KNOW HOW TO
USE IT OR IF IT'S GOING TO BE
SUCCESSFUL YET BUT THEY GOT AN
AMBITION TO SEE THAT THEY CAN
USE THIS IN THINGS LIKE THEIR
SUMMER PROGRAM.
SO I THINK THAT -- AS I SAID, WE
ARE REALLY THINKING HARD ABOUT
HOW TO EXPAND ON THESE THINGS.
IF YOU HAVE ANY SUGGESTIONS I'D
APPRECIATE IT.
I THINK IT'S -- LIKE A LOT OF
THINGS FROM COVID, THERE ARE A
LOT OF -- I THINK WE LEARNED A
LOT ABOUT OURSELVES AND HOW TO
DO SCIENCE IN COVID AND HOW TO
COMMUNICATE WITH EACH OTHER.
IF YOU HAVE TOLD US YEARS AGO WE
WOULD ALL BE ON ZOOM MEETINGS,
YOU WOULD NEVER HAVE AGREED TO
THAT.
NOW WE ALL IN ASSIST ON ZOOM.
AND STILL GETTING STUFF DONE.
SO I THINK THAT THIS IS JUST A
GOLDEN OPPORTUNITY FOR THINGS
LIKE OUR SUMMER PROGRAM TO
CAPITALIZE ON.
SO WE ARE THINKING ABOUT WAYS IN
WHICH WE CAN MAKE THAT EVEN
BIGGER AND BETTER.
>>[ OFF MICROPHONE ]
>>I THINK THE LAST TIME
DR. BIANCHI AND YOU HAD
MENTIONED THAT INTRAMURAL
PROGRAM AT THE NICHD IS SLIGHTLY
LARGER IN SIZE THAN AVERAGE
INSTITUTE.
I CALCULATED 12.8% ALLOCATION OF
THE TOTAL NIH.
IS THAT ACCURATE?
>>YES, I THINK IT'S CLOSER TO
SOMETHING LIKE 13.5.
THE MANDATE FROM DOWNTOWN IS
THAT THE INTRAMURAL PROGRAM COME
IN SOMEWHERE AROUND THE 11th
PERCENTILE OF THE OVERALL
INSTITUTE'S BUDGET.
NOW SOME INSTITUTES ARE ABOUT 8
OR 9% AND SOME INSTITUTES ARE
ABOUT 15-16%.
CHILD HEALTH RANKS CURRENTLY
6th BIGGEST PERCENTAGE OF
ALL.
WE ARE SORT OF A MEDIUM-SIZED
INSTITUTE.
WE HAVE A BUDGET THAT THE IS
SIMILAR TO NINDS WHO HAVE ABOUT
20 LESS INVESTIGATORS.
SO WE SIT UP SOMEWHERE AROUND
13% RIGHT NOW.
>>THANK YOU VERY MUCH, CHRIS.
[ APPLAUSE ]
THANK YOU FOR YOUR ANNUAL
PRESENTATION OF THE INTRAMURAL
PROGRAM.
AND BEFORE WE MOVE ON TO OUR
NEXT SPEAKER, I WANT TO
APOLOGIZE TO DR. LEE WHOM WE
NEGLECTED TO INTRODUCE.
SHE IS THE NEW HRSA
REPRESENTATIVE REPLACING
DR. ERAN LOW PADDA WHO SERVED IN
A VOLUNTEER CAPACITY FOR SEVEN
YEARS.
DR. LEE, WOULD YOU MIND TELLING
US A LITTLE BIT ABOUT YOURSELF?
>>IT'S GREAT TO BE HERE.
MY BACKGROUND IS HEALTH RESEARCH
AND ECONOMICS.
CURRENTLY I'M THE DEACOR OF
RESEARCH.
IN HRSA -- CHILDREN HEALTH
BUREAU OOH -- I WORK CDC FOR 16
YEARS AS ECONOMIST.
SO MY EXPERTISE AND USING
RIGOROUS METHODOLOGY TO POLICIES
IMPACT, ECONOMIC EVALUATION AS
WELL AS BIG DATA.
GLAD TO BE HERE.
>>WE ARE GLAD TO HAVE YOU AND
WE ARE GETTING SOME FEEDBACK.
NOW IT'S MY PLEASURE TO
INTRODUCE OUR NEXT SPEAKER,
DR. JONI RUTTER.
DR. RUTTER WAS APPOINTSES AS THE
DIRECTOR FOR THE NATIONAL CENTER
FOR ADVANCING TRANSLATIONAL
SCIENCE, NCATS, UNDER A YEAR
AGO, IN NOVEMBER OF 2022.
PRIOR TO HER APPOINTMENT AS
DIRECTOR, DR. RUTTER SERVED AS
THE NCATS DEPUTY DIRECTOR AND
BEFORE THAT, AS DIRECTOR OF
SCIENTIFIC PROGRAMS WITHIN THE
ALL OF US RESEARCH PROGRAM WHERE
SHE LED THE SCIENTIFIC
PROGRAMMATIC DEVELOPMENT AND
IMPLEMENTATION EFFORTS TO BUILD
A NATIONAL RESEARCH COHORT OF AT
LEAST A MILLION U.S.
PARTICIPANTS TO ADVANCE
PRECISION MEDICINE.
SHE'S RECEIVED SEVERAL
SCIENTIFIC ACHIEVEMENT AWARDS
INCLUDING THE 2022 RARE DISEASE
LEGISLATIVE ADVOCATES RARE VOICE
AWARD FOR FEDERAL ADVOCACY AND
THE 2022 FED HEALTH IT WOMEN IN
LEADERSHIP IMPACT AWARD.
DR. RUTTER RECEIVED HER PH.D.
FROM THE DEPARTMENT OF
PHARMACOLOGY AND TOXICOLOGY AT
DARTMOUTH MEDICAL SCHOOL AND
TODAY, SHE IS GOING TO BE
TELLING US ABOUT NCATS MISSION
TO TURN PROMISING RESEARCH
DISCOVERIES INTO REAL-WORLD
APPLICATIONS THAT IMPROVE
PEOPLE'S HEALTH BY MAKING EACH
STEP IN THE TRANSLATIONAL
PROCESS MORE EFFECTIVE AND
EFFICIENT AND THEREFORE SPEEDING
RESEARCH ACROSS A RANGE OF
DISEASES.
JONI OVER TO YOU.
>>THANK YOU VERY MUCH, DIANE.
IT'S WONDERFUL TO BE HERE.
I HAVE BEEN IN THIS POSITION
ALMOST A YEAR AND THIS IS MY
FIRST IN-PERSON/HYBRID COUNCEL.
WE ACTUALLY HAD AN IN-PERSON
COUNCIL IN MAY FOR NCATS BUT I
HAD A FUNNY CHILDHOOD MEL REAND
THE VIRUS THAT I HAD WAS CHICKEN
POX NOT COVID AND I HAD CHICKEN
POX DURING MY LAST COUNCIL.
I'M EXCITED TO BE IN PERSON
PRESENTING TO YOU TODAY AND I'M
EXCITED TO TALK ABOUT THE
RESEARCH AT THE INTERSECTION OF
TRANSLATIONAL SCIENCE AND
CHILDREN'S HEALTH AND SPANNING
THE LIFESPAN.
I USE QR CODES SO IF YOU WANT TO
GET YOUR PHONES OUT DO SO.
IN THIS ENVIRONMENT OF ZOOM,
THOSE WHO ARE ON LINE, IT'S
EASIER TO SEE THESE QR CODES ON
LINE TOO.
SO BRITT MORE INTERACTIVE
PRESENTATION, BUT I WANTED TO
MAKE SURE YOU'RE AWARE, WHY DO I
HAVE ALL THESE QR CODES DURING
MY PRESENTATION?
THANK YOU AGAIN FOR THE
INVITATION TO BE HERE TODAY.
I'M EXCITED TO TALK GO WHAT WE
DO.
I WANT TO START JUST BY TELLING
YOU ABOUT, I HOPE I CAN ADVANCE
SLIDES.
THERE WE GO.
A LITTLE BIT ABOUT THE PUBLIC
HEALTH CHALLENGE THAT WE THINK
ABOUT AT NCATS.
WE ARE NOT REALLY FOCUSED ON ANY
PARTICULAR DISEASE OR CONDITION
OR ORGAN SYSTEM AS MANY OF OUR
OTHER INSTITUTES AND CENTERS
ACROSS THE NIH.
WE FOCUS ON ALL OVER 10,000
DISEASES AND MOST OF THOSE OVER
10,000 DISEASES ARE RARE
DISEASES.
AND ONLY 5% OF THEM HAVE
TREATMENTS OR CURIOUS.
A BIG PROBLEM -- CURES.
NOT ONLY THAT, THE TIME IT TAKES
FROM DEVELOPMENT OF A
THERAPEUTIC OR A TREATMENT
APPROACH TO GET IT INTO THE
MEDICINE CABINET CAN TAKE AT
LEAST 10-15 YEARS.
NORMALLY IT TAKES 10-15 YEARS TO
GET IT INTO CLINICAL TRIALS AND
THEN EVEN ANOTHER 10 YEARS
BEYOND THAT TO GET IT INTO THE
MEDICINE CABINET.
SO IT'S A LONG TIME.
IT'S A LOT OF MONEY.
2.6 BILLION DOLLARS TO DO SO.
AND EVEN WITH THAT, THERE IS A
90% FAILURE RATE.
SO 9-10 TIMES A PROMISING
THERAPEUTIC DOESN'T QUITE MAKE
IT THROUGH THE CLINICAL TRIALS
AND THEY GENERALLY FAIL IN PHASE
II AT THE EFFICACY STAGE.
MOST OF THEM 55%, AND THEN PHASE
I AT THE SAFETY PHASE ABOUT
25-30%.
SO PHASE I AND PHASE II ARE
REALLY, REALLY TRICKY.
AND SO PART OF THE CHALLENGE FOR
US IS TO TRY TO UNDERSTAND THESE
NUMBERS.
THAT'S THE CRUX OF OUR PROBLEM
AND MAKE HEADWAY ON HOW TO
ADDRESS THESE USING
TRANSLATIONAL SCIENCE PRINCIPLES
TO DO SO.
SO OUR MISSION AT NCATS -- NEXT
SLIDE -- I'M NOT SURE HOW TO
ADVANCE THESE.
OUR MISSION IS TO TURN RESEARCH
OBSERVATIONS INTO HEALTH
TRANSLATIONS.
THERE ARE MANY BARRIERS ALONG
THE WAY TRANSLATING FROM THE
BENCH FINDINGS TO THE BEDSIDE.
AND THOSE BARRIERS CAN BE
OPERATIONAL BARRIERS.
THEY CAN BE ADMINISTRATIVE
BARRIERS.
TO GIVE YOU A SENSE OF THE OTHER
KINDS OF BARRIERS BUT MANY ARE
SCIENTIFIC.
BUT THE SCIENTIFIC ONES ARE
ACTUALLY SOMETIMES MORE
TRACTABLE THAN THOSE OPERATIONAL
AND ADMINISTRATIVE ONES.
SO WE ARE TAKING A HOLISTIC
APPROACH TO TACKLE DIFFERENT
CHALLENGES IN THE PRECLINICAL
SPACE AS WELL AS THROUGH
CLINICAL IMPLEMENTATION OF THIS
KIND OF TRANSLATIONAL RESEARCH.
SO OUR WHOLE GOAL HERE IS TO
ADVANCE THE TRANSLATIONAL
SCIENCE BY ADDRESSING THESE
LONGSTANDING BOTTLENECKS AND
THAT TABULATIONAL PIPELINE TO
GET NEW TREATMENTS TO PEOPLE
FASTER.
THAT IS OUR MANTRA HERE.
OUR VISION IS TO BRING MORE
TREATMENTS FOR ALL PEOPLE MORE
QUICKLY.
THESE ARE AUDACIOUS GOALS WE
DEVELOPED FROM THIS AND THE IDEA
IS THAT I MENTIONED WE HAVE 5%
OF THOSE THERAPEUTICS IN THE
PIPELINE ARE AVAILABLE RIGHT NOW
BUT WE NEED TO REALLY INCREASE
THAT NUMBER.
IT'S BEEN AT 5% FOR QUITE A
NUMBER OF YEARS AND SO IT'S
NOT -- IT'S A BIG CHALLENGE.
IT'S NOT VERY TRACTABLE AND IT'S
DIFFICULT TO REALLY MAKE THAT
HEADWAY.
BUT OVER THE NEXT 10 YEARS, WE
SEE AN OPPORTUNITY WITH THE NEW
TREATMENT MODALITIES, DIFFERENT
WAYS OF THINKING ABOUT BIG DATA
AND BRINGING THAT INTO THE FOLD
AND USING NEW TOOLS AND
RESOURCES TO BE ABLE TO DO THIS.
WE HOPE WE CAN REALLY MAKE
PROGRESS ON MOVING THIS UPWARDS
TO ABOUT 25%.
NOW THAT'S A BIG NUMBER.
AND WHAT I SAY TO PEOPLE IS, I
WOULD RATHER FAIL AT 25% THAN
SUCCEED AT 60%.
WE WANT TO INCREASE INCLUSIVITY
ACROSS EVERY AREA WE SUPPORT.
FROM WORKFORCE DEVELOPMENT
TRAINING AND EDUCATION.
I THOUGHT CHRIS DID A GREAT JOB
OF TALKING ABOUT THIS.
WE HAVE SIMILAR APPROACHES AS
WELL.
ALSO THROUGH OUR EXTRAMURAL
SPACE AS WELL THROUGH TRAINING
PROGRAMS.
K AWARDS AND OTHERS.
AND ALSO IN THINKING ABOUT
THINGS LIKE INCLUSIVENESS AND
DIVERSITY IN THAT WORKFORCE TOO.
AND NOT JUST IN THE TRAINING OF
PHS AND MDs AND OUR COLLEAGUES
THAT WE TYPICALLY THINK ABOUT.
BUT PEOPLE, NURSES, NURSE
PRACTITIONERS, PHARMACISTS, ALL
THE PEOPLE WHO ARE REALLY
IMPORTANT TO BRING THESE THINGS
IN THROUGH THE CLINICAL
PIPELINE.
ALL PEOPLE ARE NEEDED AT THIS
TABLE.
AND WHEN WE THINK ABOUT NEW
TREATMENT MODALITIES, WE ARE
TALKING ABOUT GENE THERAPIES
THESE DAYS, GENE EDITING
PROGRAMS.
THESE ARE NEW MODALITIES THAT WE
NEED A NEW WORKFORCE TO MEET THE
NEEDS OF THOSE AS WELL.
SO THIS IS WHAT I MEAN BY ALL
PEOPLE HERE AND THEN LASTLY, BUT
NOT LEAST, IT'S ALSO ABOUT
MAKING SURE THAT WE CAN BUILD
WAYS TO UNDERSTAND HOW TO BRING
ACCESS TO INDIVIDUALS FOR THE
THERAPIES THAT GET DEVELOPED.
AND THIS IS AN ECOSYSTEM
PROBLEM.
BUT WE ARE PASTER OF THAT
ECOSYSTEM.
WHAT CAN WE DO TO BE A PART OF
THAT?
AND THEN LASTLY, WE WANT TO
ENABLE DIAGNOSTICS AND
THERAPEUTICS TO REACH PEOPLE
TWICE AS FAST THROUGH A LOT OF
THIS WORK WE ARE DOING.
AND I'LL TALK A LITTLE BIT MORE
ABOUT SOME OF THE APPROACHES WE
ARE USING TO GET THERE.
SO IF YOU GO TO THE NEXT
SLIDE -- THESE ARE SOME OF THE
BROADER KEY APPROACHES THAT I
WANTED TO TALK ABOUT BUT I'LL
MENTION THEM MORE SPECIFICALLY.
PRIMARILY WE WANT TO THINK ABOUT
HOW CAN WE BRING MORE THAN ONE
DISEASE AT A TIME APPROACHES TO
THE DISEASES THAT WE STUDY WITH
OVER 10,000 DISEASES.
IF WE GO ONE DISEASE AT A TIME,
WE'RE GOING TO BE HERE FOR A
WHILE.
SO, WE DON'T HAVE THAT KIND OF
TIME.
SO THE MORE WE CAN THINK ABOUT,
THE MORE DISEASES AT A TIME
APPROACHES, THAT WILL GET US
THERE BETTER.
DEVELOPING NEW MODELS THAT ARE
PREDICTED PERSON'S REACTION TO
THERAPEUTICS.
WHAT MAKES THESE MODELS MORE
PREDICTIVE?
THIS IS ANOTHER AREA WHERE WE
ARE INVESTING QUITE A NUMBER OF
RESOURCES.
AND THEN CLINICAL TRIALS SO THEY
MORE ACCURATELY REFLECT THE
PATIENT POPULATION.
WE NEED TO UP OUR GRAHAM AND
COMMUNITY ENGAGEMENT AND MAKING
SURE THAT WE ARE BRINGING THE
RIGHT PEOPLE TO THE TABLE -- UP
OUR GAME.
AND THEN LASTLY, WE ARE
INTERESTED IN FIGURING OUT HOW
TO LEVERAGE REAL WORLD DATA AND
BIG DATA APPROACHES TO ADDRESS
THE PUBLIC HEALTH NEEDS AND THIS
IS A BIG EMPHASIS OF OURS AS
WELL.
SO NEXT SLIDE.
I WANT TO GIVE YOU A SENSE OF
OUR BUDGET AT NCATS.
WE ARE 923 MILLION DOLLARS IC
CENTER.
MOST OF OUR SUPPORT IS TAILORED
FOR THE CLINICAL AND
TRANSLATIONAL SCIENCE AWARDS
PROGRAM.
THIS IS A PROGRAM THAT IS A LINE
ITEM IN OUR BUDGET.
IT'S 63 INSTITUTIONS ACROSS THE
COUNTRY THAT SUPPORT THE
CLINICAL AND TRANSLATIONAL
INFRASTRUCTURE AND RESEARCH
PROGRAMS THAT WE ARE SUPPORTING
FROM NCATS.
AND THEN THE REST OF THAT, THE
REMAINING 30% OR SO OF THAT IS
GEARED FORWARDS TOWARDS ALL
OTHER ACTIVITIES RELATED TO THE
INTRAMURAL PROGRAM AND RARE
DISEASES PROGRAM, SPECIAL
INITIATIVES AND WE HAVE A
PARTNERSHIP DRUG DEVELOPMENT
PROGRAM AS WELL.
SO THESE IS HOW WE THINK ABOUT
OUR BUDGET.
AND REALLY REFLECT THAT IN THE
SUPPORT THAT WE ARE TRYING TO
PURSUE IN THE EFFORTS THAT WE
HAVE.
AND NOW I WANT TO GET INTO WHAT
SOME OF THOSE EFFORTS ARE AND
WHY IT'S CRITICAL WE AT NCATS
REALLY COLLABORATE AND PARTNER
WITH OUR SISTER INSTITUTIONS
ACROSS THE NIH.
AND NICHD IS THE TRIFECTA.
WE PARTNER WITH THEM ON
ADMINISTRATIVELY, OPERATIONALLY
AND SCIENTIFICALLY.
AND SO I WANT TO HIGHLIGHT SOME
OF THOSE RESEARCH PROGRAMS THAT
WE HAVE.
SO IF YOU GO TO THE NEXT SLIDE,
I'LL TOUCH UPON A VARIETY OF
EFFORTS IN THE PRE-CLINICAL
SPACE, CLINICAL SPACE AND DATA
SCIENCE SPACE AS WELL.
THE NEXT SLIDE IS -- I'M GOING
TO START OFF IN THE PRE-CLINICAL
SPACE BECAUSE I GAVE YOU THE
TEASER OF DEVELOPING NEW
PREDICTIVE MODELS.
HERE IS AN EFFORT THAT I THINK
HAS REALLY HUGE CONSTITUTIONAL
OF MAKING A BIG IMPACT ON HOW WE
CAN ELEVATE THAT NUMBER OF 90%
FAILURE RATE -- MAYBE NOT
ELEVATE.
MAYBE REDUCE IS WHAT I MEAN.
BUT THAT'S THE IDEA.
SO HISTORICALLY OR
TRADITIONALLY, WE USED 2 D-CELL
LINES AND MODELS TO HELP US BE
THE MAIN MODELS TO UNDERSTAND
HUMAN CONDITIONS BUT AS YOU ALL
KNOW, IF YOU GO TO THE NEXT
SLIDE, THEY AREN'T HUMANS.
AND SO WE WANTED TO TRY TO
FIGURE OUT WAYS IN WHICH WE CAN
REFLECT THE PHYSIOLOGICAL,YOU OF
HUMANS IN DIFFERENT KINDS OF
APPROACHES FOR REPRESENTING
ORGANS ON A CHIP, TISSUES ON A
CHIP, ET CETERA.
WE DEVELOPED PROGRAMS TO SUPPORT
THESE ACTIVITIES FOR A VARIETY
OF DIFFERENT TISSUES AND ORGAN
SYSTEMS.
AND THESE CAN BE REECT INNED FOR
A VARIETY OF GROUPS WITHIN THE
POPULATION FROM KIDS TO ADULTS
TO ELDERLY.
WE WANT TO BE ABLE TO MAKE SURE
WE ARE REPRESENTING THAT.
AND IT'S A UNIQUE WAY IN WHICH
TO BRING THE ENVIRONMENT TO THE
TABLE AS WELL.
I'LL GET TO THAT IN A MOMENT.
AS YOU INCREASE COMPLEXITY TO
THESE TYPES OF APPROACHES, YOU
REDUCE YOUR ABILITY TO DO
HIGH-THROUGHPUT SCREENING.
THIS IS SOMETHING WE ARE VERY
PASSIONATE ABOUT TRYING TO
UNDERSTAND, HOW TO NOT LOSE THE
ABILITY TO DO HIGH-THROUGHPUT
SCREENING BECAUSE OF THE NEED TO
CONTINUE TO BE MOVING AT
SOMEWHAT OF A RAPID PACE AS MUCH
AS POSSIBLE.
WE NEED THESE NEW TECHNOLOGIES
FOR BETTER PREDICTING THESE
KINDS OF TRANSLATIONAL
PIPELINES.
THIS IS THE IDEA BEHIND THAT.
THE NEXT SLIDE, I WANTED TO GIVE
YOU A REAL-WORLD EXAMPLE.
THIS IS WORK THAT WE HAVE DONE
THROUGH ONE OF OUR TISSUE CHIP
PROGRAMS AND THIS IS
HIGHLIGHTING THE FETAL MATERNAL
INTERFACE ON A CHIP.
SO HERE WE HAVE THE CELLS AND
THE PRACTICE TERNAL AND FETAL
SIDE AND WE CAN -- MATERNAL --
LOOK AT DIFFERENT TYPES OF
EXPOSURES ON THE TISSUES ON A
CHIP AND UNDERSTAND WHAT THE
IMPACTS ARE.
SO THIS PARTICULAR STUDY I'M
SHOWING THIS GROUP LOOKED AT
CADMIUM EXPOSURE FROM THE
ENVIRONMENT AND FOUND
SIGNIFICANT CELL DEATH ON
MATERNAL CELLS BUT MINIMAL ON
FETAL CELLS.
SO THESE KINDS OF PRACTICE
ADDICTIVE MODELS HELP US DETECT
AND PARSE OUT WHERE THE
IMPLICATIONS OF THIS KIND OFES
SUPPOSURE MIGHT HAVE THE HARMFUL
EFFECTS AND WHERE THEY MIGHT NOT
AND THEN TRANSLATED INTO
POTENTIAL INTERVENTION KIDNEYS
OF APPROACHES.
THIS IS ONE OF THOSE AREAS IN
WHICH WE ARE STARTING TO PURSUE.
IF YOU GO TO THE NEXT SLIDE,
PLEASE, THIS -- AND YOU CAN HIT
THE ENTER AGAIN.
THIS IS A BROADER PROGRAM WE
HAVE AT NCATS.
IT'S TISSUE CHIPS AND SPACE
PROGRAM.
THIS HAS BEEN A BIG PROGRAM IN
REALLY DEVELOPING THE
TECHNOLOGIES AROUND THESE
TISSUEOS CHIPS BECAUSE WE HAVE
BEEN ABLE TO WORK WITH NASA
ENGINEERS AND MATERIAL
SCIENTISTS, CHEMISTS AND
BIOLOGISTS TO WORK ON DEVELOPING
THESE KINDS OF MODELS BUT IN A
WAY THAT IT REDUCES THE SIZE.
WE STARTED OFF WITH BIG KINDS OF
TISSUES ON CHIPS AND NOW WE HAVE
BEEN ABLE TO GET THEM ON TO A
VERY SMALL PLATFORM THAT IS THE
SIZE -- AND SMALLER OF A CREDIT
CARD.
SO NOW WE CAN SEND THESE UP INTO
SPACE AND THIS IS ONE EVER OUR
ASTRONAUTS THAT IS CONDUCTING
THESE EXPERIMENTS FOR US.
AT THE SAME TIME WE HAVE PEOPLE
ON EARTH DOING THE SAME SPIRITS.
SO WE THE -- EXPERIMENTS.
WE HAVE MICROGRAPHITY
ENVIRONMENTS DOING THIS.
THE REASON THIS IS SO IMPORTANT
IS BECAUSE WE HAVE LEARNED THAT
ASTRONAUTS WHO GO INTO SPACE, IF
THEY SPEND A LOT OF TIME IN
SPACE, THEY AGE FASTER.
WE WANTED TO UNDERSTAND WHY THAT
IS.
IT TURNS OUT A LOT HAS TO DO
WITH INFLAMMATION.
AND SO, THROUGH A VARIETY OF
THESE EXPERIMENTS IN THE LAST
EIGHT YEARS, OVER THAT LAST
EIGHT YEARS, THIS IS THE MAIN
THEME WE HAVE FOUND.
SO THEN WE CAN BRING THAT
INFORMATION BACK DOWN-TO-EARTH
AND THIS IS BRINGING THE TISSUE
CHIPS BACK AND WE ARE ABLE TO
ANALYZE THEM.
NOW WE ARE ABLE TO CONDUCT THE
EXPERIMENTS AND FIGURE OUT WAYS
IN WHICH HOW WE CAN IMPACT THOSE
IN OTHER EXPERIMENTS THAT WE CAN
PERFORM ACROSS THE LIFESPAN.
SO THIS IS WHY THIS PARTICULAR
PROGRAM HAS BEEN SO CRITICAL FOR
US BECAUSE IT'S REALLY ELEVATED
OUR ABILITY TO MAKE THESE
TISSUES ON A CHIP FOR A VARIETY
OF ORGAN SYSTEMS.
SO THIS KIND OF PARTNERSHIP HAS
BEEN REALLY VALUABLE.
AND IF YOU GO TO THE NEXT SLIDE,
I WANT TO GET INTO A LITTLE BIT
ON THE RARE DISEASES SIDE OF THE
HOUSE.
AND WE'RE LOOKING TO USE THESE
KINDS OF TISSUES ON CHIPS FOR
RARE DISEASE PROGRAMS AND YOU
CAN THINK ABOUT WAYS OF
HIGHLIGHTING RARE DISEASES AND
PATIENTS WITH RARE DISEASES TO
HAVE THEIR CELLS REPRESENTED ON
CHIPS.
AND SO THERE IS A TRANSITION
HERE THAT WE ARE STARTING TO GET
INTO AND MOVING THESE MORE INTO
THE MAINSTREAM KINDS OF RESEARCH
AGENTS WE CAN DO.
BUT RARE DISEASES ARE CRITICAL.
AND AT NCATS, WE ARE -- WE WORK
ON ALL DISEASES.
RARE DISEASES ARE
QUINTESSENTIALLY THE ABILITY FOR
US TO FIND NEW WAYS TO DEVELOP
AND TREAT RARE DISEASES BUT THE
IMPACTS THAT THOSE
UNDERSTANDINGS OR FINDINGS CAN
HAVE CAN MANIFEST ALSO INTO
COMMON DISEASES AS WELL.
AND SO THIS IS WHY WE HAVE SUCH
A ROBUST PROGRAM ON RARE
DISEASES.
BUT AGAIN, THIS ISN'T SOMETHING
THAT WE DO IN A VACUUM.
WE WORK WITH A VARIETY OF
INSTITUTES AND CENTERS ACROSS
THE NIH TO DO THIS.
AND I GIVE YOU A SENSE OF THE
ECONOMIC BURDEN OF RARE DISEASES
BECAUSE I DON'T THINK I NEED TO
TELL THIS GROUP THAT RARE
DISEASES AREN'T RARE.
OF COURSE THEY ARE.
WE LOOKED AT PEOPLE WITH RARE
DISEASES IN THEIR MEDICAL
RECORDS AND COMPARED THEM TO
WEEP WITHOUT.
AND WE FOUND THEY WERE SPENDING
3-5 TIMES MORE IN MEDICAL CARE
COSTS FOR THOSE WHO ARE RARE
DISEASES.
WHEN YOU TAKE THAT AND MULTIPLY
THAT 30 MILLION PEOPLE IN THE
U.S. WHO HAVE RARE DISEASES,
THAT GETS YOU TO A NUMBER OF 400
BILLION DOLLARS PER YEAR IN
MEDICAL CARE COSTS.
AT THE SAME TIME, ANOTHER CAME
UP WITH 417 BILLION DOLLARS.
SO WE FEEL CONFIDENT IN THIS
NUMBER.
THEY WENT A LITTLE BIT FURTHER.
THEY LOOKED AT THE BEYOND
MEDICAL CARE COSTS, THE COSTS OF
THE INDIVIDUAL, THE INDIRECT
MEDICAL COSTS.
WHEN YOU ADD THOSE IN, IT'S A
TRILLION DOLLARS PER YEAR IN
TOTAL COSTS FER RARE DISEASES.
THIS IS A VERY LARGE ECONOMIC
BURDEN AND DISEASE BURDEN FOR
THIS COMMUNITY.
SO IF YOU GO TO THE NEXT SLIDE,
WE HAVE A LOT OF ROOM TO MAKE
UP.
WE HAVE A BIG MOUNTAIN TO CLIMB
HERE.
THIS IS JUST SHOWING THAT THE
RESEARCH GAP COMPARED TO THE
TREATMENT GAP.
THAT TOP LINE THERE, THE
PUBLICATIONS IN THE RARE DISEASE
SPACE, THIS IS ON A LOGARITHMIC
SCALE, THAT'S THE ONLY WAY TO
LOOK AT THIS.
AND THE IF YOU LOOK BELOW, THESE
ARE FDA APPROVALS FOR RARE
DISEASE TREATMENTS AND THEN
BELOW THAT ARE THE EMA
APPROVALS.
SO OUR GOAL IS TO REALLY THINK
ABOUT THIS AND START TO
UNDERSTAND WHAT ARE MAKING THESE
TREATMENTS WORK.
AND HOW CAN WE BUILD IN MORE
AREAS OF DATA SCIENCE AND
NATURAL HISTORY STUDIES TO
ADDRESS THIS PARTICULAR GAP TO
HOPEFULLY START TO SHORTEN IT?
IF YOU GO TO THE NEXT SLIDE, THE
MAIN THEM AROUND HERE WE SUPPORT
AT NCATS IS SOMETHING CALLED THE
RARE DISEASE CLINICAL RESEARCH
NETWORK.
AGAIN, THIS IS IT NOT SOMETHING
IS THAT WE DO ALONE.
THIS IS WITH BROADER SUPPORT
ACROSS THE NIH.
AND IT'S CIRCLED NICHD BECAUSE
THAT'S YOU.
AND APPRECIATE ALL THE EFFORTS
THAT YOU HAVE IN HELPING TO
SUPPORT THIS PROGRAM.
BUT THIS IS A NETWORK OF ABOUT
20 DIFFERENT RESEARCH TEAMS
COLLABORATING TO REALLY LOOK AT
RARE DISEASES TO BUILD THIS
DIAGNOSTIC AND THERAPEUTIC
PIPELINE FOR THESE DISEASES.
THEY HAVE TO LOOK AT AT LEAST
THREE OR MORE DISORDERS TO BE A
PARTNER OF THIS PARTICULAR
NETWORK.
THEY HAVE TO HAVE AT LEAST 3-5
CLINICAL STUDIES INCLUDING
NATURAL HISTORY STUDIES,
BIOMARKERS, CLINICAL TRIALS OR
OTHER OUTCOMES.
THEY HAVE TO INCLUDE ENGAGEMENT
AND DISSEMINATION AND ALL OF
THEM HAVE TO HAVE A PATIENT
ADVOCATE GROUP ASSOCIATED WITH
THEM.
AND THAT HAS GROWN AND HAS BEEN
CRITICAL TO THE SUCCESS OF THIS
PROGRAM.
AND THERE IS ALSO ENHANCEMENTS
FOR TRAINING SCHOLARS IN THIS
WORLD.
SO IF YOU GO TO THE NEXT SLIDE,
OVER THE LAST SEVERAL YEARS WE
HAD THE PROGRAM AND IT HAS
GROWN.
WE CURRENTLY HAVE ABOUT 19 SITES
PER AWARD AND WE HAVE ALSO
EXPANDED INTERNATIONALLY TO
BRING IN THE INTERNATIONAL
COMMUNITY INCREDIBLY CRITICAL
FOR THE RARE DISEASE COMMUNITY
BECAUSE THERE ARE RARE DISEASES
THAT HAVE AN N OF 1 OR N OF 10.
IF WE CAN FIND THOSE RARE
DISEASE PATIENTS INTERNATIONALLY
ALL THE BETTER.
THAT'S WHY IT'S SO IMPORTANT TO
BE COLLABORATIVE.
IF YOU GO TO THE NEXT SLIDE, I
WANT TO HIGHLIGHT SOME OF THE
IMPACT THAT THE PROGRAM HAS HAD
OVER THE LAST COUPLE OF YEARS.
AND 5 YEAR ITCHING MINUTES
SHOWING IT ON HERE.
AND EARLY ON AS WE WERE GETTING
STARTED, PUBLICATIONS WERE
SLOWER TO COME BUT NOW AS IT
GAINED MOMENTUM, WE ARE SEEING
MORE OF THAT.
SO OVER TIME WE SEE MORE
COLLABORATIONS AND NETWORKING
OPPORTUNITIES.
AND WE HAVE ALSO SEEN A LOT MORE
OF THE INTERNATIONAL INPUT ON TO
THIS PROGRAM AS WELL.
NEXT SLIDE.
WHAT HAS BEEN REALLY FANTASTIC
TO SEE IS THAT THE RDCRN PROGRAM
IN A NUTSHELL, WE HAVE EIGHT FDA
APPROVED TREATMENTS THROUGH THIS
PROGRAM FOR NINE DIFFERENT RARE
DISEASES.
SO WHEN YOU THINK ABOUT THE
NUMBERS THAT I SHOWED THE VERY
BEGINNING, THIS IS REMARKABLE TO
SEE AND I ONLY SEE THIS GETTING
OR GROWING MORE OVER TIME.
SO THIS IS A WONDERFUL
OPPORTUNITY FOR US TO CONTINUE
THIS WORK TOGETHER AND I'M HAPPY
TO SAY THAT WE ARE GOING TO
CONTINUE THIS WORK TOGETHER IN
OUR NEXT INITIATION OF THE RDCRN
COMING IN ABOUT A YEAR OR SO.
WHAT ONE OF THE KEY THINGS IS WE
WANT TO BRING IN THE DATA
SCIENCE ASPECTS.
WHEN THIS STARTED, IT WAS VERY
LIMITED IN TERMS OF THE DATA
SCIENCE APPROACH THEY WERE
DOING.
THEY WEREN'T REALLY SHARING AS
MUCH AS THEY COULD HAVE BEEN.
WE HAVE REALLY RETOOLED THAT
ENVIRONMENT.
WE CREATED THIS REALLY IMPORTANT
OPERATIONAL ENVIRONMENT WHERE
THEY CAN SHARE THEIR DATA
INTERNALLY WITHIN THE RDCRN.
SO WE CREATED ALL THESE TOOLS
AND RESOURCES IN THE
CLOUDS-BASED ENVIRONMENT TO DO
THIS.
THIS IS OVER THE LAST FOUR YEARS
WE HAVE BEEN BUILDING THIS.
AND OUR VISION FOR THIS IS
BROADER THAN THAT.
WE WANT TO GO BEYOND THE
OPERATIONAL ENVIRONMENT TO MORE
OF A SHARED ENVIRONMENT SO THAT
A VARIETY OF OTHER PEOPLE IN THE
EXTRAMURAL COMMUNITY CAN HAVE
ACCESS TO THESE DATA THAT THE
RDCRN CREATED.
THAT THE IS WHAT IS COMING.
WE HOPE IN THE NEXT COUPLE OF
YEARS, THIS WILL BE MORE
AVAILABLE FOR PEOPLE TO USE.
SO THIS IS AN IMPORTANT ASPECT
OF WHAT WE DO.
AND ON THE NEXT SLIDE, JUST
CONTINUING ON THE SCHEME OF BIG
DATA, WE HAVE BEEN WORKING WITH
NICHD TO DEVELOP A RARE SOURCE.
THIS IS NOT PART OF THE RDCRN
BUT IT IS MORE INTRAMURALLY
DEVELOPED WITH A VARIETY OF
PARTNERS AT NCI AND NINDS AND WE
ARE LOOKING AT THE OMICS
APPROACHES FOR HOW TO BRING
OMICS DATA TOGETHER TO IMPACT
THAT ON RARE DISEASES AS WELL.
THIS WILL BE ANOTHER PART OF THE
ELEMENT AREA IN RARE DISEASES.
AND THE NEXT SLIDE IS JUST SORT
OF CULMINATING ON THE IDEA OF
THE BIG DATA CHALLENGES THAT WE
HAVE.
WE ALSO HAVE NEW OPPORTUNITIES
IN USING ARTIFICIAL INTELLIGENCE
AND MACHINE LEARNING TO DO THIS
AS WELL.
THIS IS WHAT WE ARE BRINGING TO
THE FOREIN TERMS OF SHORTENING
THE DIAGNOSTIC ODYSSEY.
IT TAKES ON AFTERNOON 7 YEARS
FOR A PATIENT TO BE DIAGNOSED
FOR A RARE DISEASE.
FAR TOO LONG.
DURING THAT TIME IF A PATIENT
MAY SORT OF AGE OUT OF THAT
TREATMENT WINDOW.
SO WE MISSED AN OPPORTUNITY TO
HAVE DISEASE MITIGATING EFFECTS
HERE.
SO WE WANT TO FIGURE OUT HOW TO
SHORT THEN DIAGNOSTIC ODYSSEY.
WHEN YOU LOOK INTO EHRs, THE
RARE DISEASE PATIENTS ARE
PRACTICALLY INVISIBLE.
SO, WE WANT TO FIGURE OUT WAYS
IN WHICH WE CAN USE OUR
ARTIFICIAL INTELLIGENCE MACHINE
LEARNING TO DO THIS.
THIS IS WHAT THIS PARTICULAR
OPPORTUNITY IS FOR.
AND WE ARE LOOKING AT IT IN A
VARIETY OF WAYS.
BUT VERY BRIEFLY, WE HAVE A
GRADUATE THAT IS LOOKING AT
ELECTRONIC HEALTH RECORDS TO
DEVELOP ALGORITHMS TO IDENTIFY
PATIENTS CURRENTLY EXIST.
AND THEN THEY ARE GOING TO GO
FORWARD IN TIME TO TRY TO
IDENTIFY PATIENTS USI USING THAL
AM TO SEE HOW WELL THEY PERFORM.
AND IF THEY PERFORM WELL, GREAT,
WE MOVE ON TO VALIDATE THAT.
IF THEY DON'T PERFORM WELL, WE
RETOOL T THIS IS ONE OF THOSE
AREAS WE ARE REALLY PUSHING THE
ENVELOPE ON FOR HELPING OUR
HEALTH CARE ECOSYSTEM FIND RARE
DISEASES BETTER TOO.
SO A VARIETY OF OTHER PROGRAMS
HERE THEY WON'T MENTION BUT IF
YOU LIKE TO LEARN MORE, THERE IS
THE QR CODE FOR YOU.
IF YOU GO TO THE NEXT SLIDE, I
WANT TO GET INTO ANOTHER
OPPORTUNITY FAIR RARE DISEASE
SPACE IN THE AREA GENE-TARGETED
THERAPIES, GENE EDITING, THERAPY
DEVELOPMENT, AND GENE THERAPIES
THEMSELVES.
WE HAVE A VARIETY OF PROGRAMS IN
THIS SPACE AND I JUST WILL
HIGHLIGHT A FEW THINGS ON EACH
ONE OF THEM BUT THEY ARE ALL AT
DIFFERENT STAGES OF DEVELOPMENT
HERE.
OUR SOMATIC CELL GENE EDITING
FOCUSED ON TOOLS AND PLATFORM
APPROACHES TO DELIVER GENE
EDITING MILL YOU INTO THE RIGHT
TARGET CELLS SMALL ANIMAL MODELS
AND LARGE ANIMAL MODELS, NOW WE
WILL START MOVING INTO THE
CLINIC OF THIS COMMON FUND
PROGRAM.
WE ARE STILL AWAYS AWAY.
SO THAT IS EARLIER ON IN THIS
DEVELOPMENT OF THIS KIND OF
MODALITY.
THE NEXT ONE IS, THE ACCELERATED
MEDICINE PARTNERSHIP, THE
BESPOKE GENE THERAPY CONSORTIUM.
THIS IS ONE THAT NICHD IS AWARE
OF AS WELL ALONG WITH A VARIETY
OF OTHER PROGRAMS AND I'LL TALK
ABOUT IT MORE IN A SECOND.
AND THEN THE PLATFORM VECTOR
GENE THERAPY PLATFORM WE ARE
COLLABORATING WITH A VARIETY OF
INSTITUTES AND CENTERS ACROSS
THE NIH.
THIS IS HOW TO OPERATIONALIZE IF
WE CAN GENERATE VECTOR PLATFORM
FOR GENE THERAPY, WE CREATE THE
CAPSID FOR GENE THERAPY BUT THE
GENE NECESSARILY ISN'T KNOWN.
SO IF WE DON'T KNOW THE GENE,
HOW DO WE THINK ABOUT THAT
DEVELOPMENT IN THE REGULATORY
REQUIREMENTS FLEDDED TO GO
THROUGH THIS PHASE OF REGULATORY
SPACE TO MAKE SURE THAT THAT CAN
BE SOMEWHAT STREAMLINED SO WHEN
WE THINK ABOUT ADDING
THERAPEUTIC GENES INTO THOSE
CAPSIDS THAT'S ALL WE ARE
THINKING ABOUT, IS THE THERAPY
NOT NECESSARILY DELIVERY
MECHANISM.
THAT'S THE DELIVERY BEHIND THIS.
AND THEN WE CAN STREAMLINE THE
PLATFORM AND EARLIER INDICATIONS
FOR -- OR EARLIER ON RAMPS FOR
CLINICAL TRIALS.
IF YOU GO TO THE NEXT SLIDE, I
WANTED TO HIGHLIGHT ONE OF THE
AREAS FOR THE SOMATIC CELL
GENADEITING PROGRAM THAT IS
THINKING ABOUT, WE NEED PEOPLE'S
HELP TO FIGURE OUT HOW TO TARGET
GENOME EDITORS TO SPECIFIC HARD
TO REACH PLACES WITHIN THE BODY.
HOW CAN WE THINK ABOUT
PROGRAMMING DELIVERY SYSTEMS FOR
DELIVERING THESE GENOME EDITING
TOOLS AND THEN HOW DO WE MAKE
SURE WE CAN GET NON VIRAL CAPSID
DELIVERIES THROUGH THE
BLOOD-BRAIN BARRIER?
THIS IS A CHALLENGE WE HAVE ON
THE STREET.
IT'S OPEN.
SO I WANTED TO MAKE SURE YOU
KNEW ABOUT IT IN CASE YOU HAVE
COLLEAGUES WHO MIGHT BE ABLE TO
TAP INTO THIS AS WELL.
SO PLEASE TAKE A LOOK AT THAT.
SO THIS IS FOR THE SOMATIC CELL
GENE EDITING PROGRAM.
NOW I WANTED TO GO NEXT TO THE
CONSORTIUM PROGRAM.
THIS IS A LARGER PUBLIC-PRIVATE
PARTNERSHIP WITH GOVERNMENT,
INDUSTRY AND NON-PROFIT
ORGANIZATIONS AT THE TABLE TO BE
ABLE TO DO THIS.
AND WE'RE A YEAR IN NOW BUT WE
ARE ALREADY SELECTING CLINICAL
TRIALS TO GO THROUGH THE
PROGRAM.
THE WHOLE IDEA HERE IS REALLY TO
THINK ABOUT HOW TO ENHANCE THE
BIOLOGY OF THE CAPSID
DEVELOPMENT.
SO THAT WE CAN INCREASE THE
ABILITY FOR THE GENES THAT WE
ARE LOOKING AT TO GO INTO THOSE
CAPSID FOR DELIVERY.
WE WANT TO ENHANCE THE VECTOR
GENERATION OF THAT AND THEN
ENHANCE THE THERAPEUTIC GENE
EXPRESSION OF THE GENES THAT GO
INTO THOSE CAPSIDS.
THAT'S TASK NUMBER 1.
RIGHT NOW WE ARE GETTING VERY
LOW PERCENTAGES OF THIS ACTIVITY
THEY IS REACHING THE TARGET
CELLS.
SO WE WANT TO SEE IF WE CAN
RAISE THAT AT LEAST AN ORDER OF
MAGNITUDE.
AND THEN WE WANT TO ADVANCE THE
ACCESS TO THESE TECHNOLOGIES FOR
THESE VECTORS AND THAT MEANS WE
NEED TO WORK ON MANUFACTURING
PROGRAMS.
WE NEED TO THINK ABOUT WHAT ARE
THE CRITICAL QUALITY ELEMENTS
FOR MANUFACTURING.
WE NEED TO BE THINKING ABOUT HOW
WE NEED TO DO THE PRE-CLINICAL
TESTING, FOXTESTING ET CETERA.
SO THAT IS WHAT THIS NEXT PHASE
IS ABOUT TO THINK ABOUT
STREAMLINING THE REGULATORY
ELEMENTS OF THIS CONSORTIUM.
SO THAT IS TASK NUMBER 2.
OF AND THAT MEANS THAT WE'RE
WORKING CLOSELY WITH THE FDA SO
PETER MARKS AT THE FDA, WE ARE
WORKING HAND-IN-HAND WITH THEM
TO MAKE SURE WE ARE ABLE TO
DEVELOP THIS.
AND ON THE NEXT SLIDE, THE MOST
RECENT ACTIVITY HERE IS THAT WE
JUST ANNOUNCED OUR EIGHT
CLINICAL TRIALS THAT WE'LL BE
DOING FOR THIS PARTICULAR
PROGRAM.
AND THESE ARE THE DISEASES THAT
WE'LL BE STUDYING FOR THAT.
AND THE THING TO THINK ABOUT
HERE IS THAT ALL OF THESE
DISEASES ARE RARE DISEASES BUT
THEY HAVE NO COMMERCIAL
LIABILITY.
THERE IS NOBODY WORKING ON THEM
NOW.
SO WHY IS THAT IMPORTANT?
IT'S IMPORTANT BECAUSE
EVERYTHING THAT WE DO HERE CAN
BE MADE PUBLIC.
AND SO WE CAN SHARE THE
ACTIVITIES THAT WE HAVE WITH THE
FDA AND WITH OUR COLLABORATORS
AND THE PEOPLE INVOLVED IN THIS
PROGRAM AND MAKE THESE AVAILABLE
AS AVAILABLE AS POSSIBLE TO
DISSEMINATE THE INFORMATION AND
MAKE THEM SORT OF MORE
DEMOCRATIZED IF YOU WILL.
AND WE STARTED A LITTLE BIT OF
THIS IN OUR PROGRAM THEY
MENTIONED BEFORE, THAT NCATS HAS
ALREADY STARTED ON.
I'LL TAKE YOU TO THE NEXT SLIDE
NEXT.
AND THIS PROGRAM, IT'S VERY
SIMILAR IDEA AS I MENTIONED, WE
WANT TO UNDERSTAND HOW WE CAN
SPEED UP OUR ON-RAMP TO CLINICAL
TRIAL DEVELOPMENTS FOR GENE
THERAPIES.
THIS HAS BEEN A COLLABORATION.
I HIGHLIGHTED THE NCATS PEOPLE
BUT I SHOULD HAVE HIGHLIGHTED
ALSO THE NIC HAD.
D FOLKS BECAUSE THERE ARE
SEVERAL ON HERE.
-- NICHD FOLKS.
THIS IS REALLY -- WE HAVE
DEVELOPED THIS GENE THERAPY
USING AV9HPCCA.
WE JUST RECEIVED ORPHAN DRUG
APPROVAL AND RARE PEDIATRIC
DESIGNATION APPROVAL.
WE CAN PROCEED WITH THE CLINICAL
TRIALS.
NOW USUALLY ALL THESE
INTERACTION SYSTEM WITH THE FDA
ARE PROPRIETARY SO WE --
COMPANIES DON'T TALK ABOUT IT.
HERE WE HAVE BEEN ABLE, BECAUSE
IT'S WORKING WITH US, AND THERE
IS NO COMMERCIAL LIABILITY, WE
ARE ABLE TO PUBLISH THESE
TEMPLATES SO OTHERS CAN LEARN
AND USE THEM.
SO THIS IS CRITICAL AND
HOPEFULLY WILL BE UP TO THE
USEFULNESS IN OUR RESEARCH
COMMUNITY.
SO, THE NEXT SLIDE I WANT TO
HIGHLIGHT WHY IN THE WORLD WE
ARE DOING THIS.
THIS IS JUST A SUCCESS STORY.
WE HAVE BEEN WORKING IN THE
SPACE FOR QUITE A NUMBER OF
YEARS AND OUR TEAM HAS DEVELOPED
A COLLABORATION WITH
THERAPEUTICS COMPANY AND THE
NATIONAL TAIWAN UNIVERSITY TO
DEVELOP GENE THERAPY FOR AADC
DEFICIENCY.
SO THIS IS A DEFICIENCY OF KIDS
WHERE THEY ARE NOT ABLE TO MAKE
NEUROTRANSMITTERS IN THEIR
BRAIN.
AND JUST REALLY DRAMATIC
EFFECTS.
THEY DON'T LIVE VERY LONG.
BUILD 4-8 YEARS.
YOU CAN SEE ON THIS PICTURE TO
THE LEFT HERE, THE SMALLER
PICTURE, THIS IS THIS CHILD
EARLY ON IN THIS DISEASE BUT
THEY WERE PART OF THIS
DEVELOPMENTAL PROGRAM.
SO AFTER THE GENE THERAPY WAS
CONDUCTED IN THIS CLINICAL
TRIAL, WE SAW SUCH DRAMATIC
EFFECTS.
AND SO NOW THE AGILLIS
THERAPEUTICS WAS ACQUIRED BY PTC
THERAPEUTICS, A LARGER PHARMA
COMPANY AND THEY RECEIVED
EUROPEAN COMMISSION APPROVAL FOR
THIS, DIRECT INJECTION INTO THE
BRAIN TO AFFECT THIS.
SO NOW WE ARE PUTTING A BLA FOR
FDA APPROVAL AS WELL.
SO HOPEFULLY THAT WILL FOLLOW
SUIT.
THIS THE IS A REALLY GAIT
EXAMPLE OF SEEING THE TIME IT
TAKES TO DEVELOP THESE KINDS OF
PROGRAMS AND IMPACT THEY CAN
REALLY HAVE FOR PEOPLE WITH RARE
DISEASES.
AND IF YOU GO TO THE NEXT SLIDE,
THERE IS A VARIETY OF SERIES
LIKE THIS.
ALSO MANY OTHER SPACES.
AND WE HAVE A DAY EVERY YEAR,
RARE DISEASE DAY AT THE NIH, THE
LAST DAY OF FEBRUARY.
THE AUSPICIOUS DAY OF THE YEAR.
WE BRING EVERYBODY TOGETHER WHO
IS REALLY INTERESTED IN RARE
DISEASES FROM STAKEHOLDERS,
PATIENTS, PATIENT ADVOCATES,
COMMUNITY MEMBERS,
RESEARCHERS -- YOU NAME IT THEY
ARE HERE.
AND SO IT'S A WONDERFUL DAY
WHERE YOU CAN COME AND TAKE A
LOOK AT THE WHOLE PROGRAM OF
RARE DISEASES.
SO I JUST BRING THIS TO YOUR
ATTENTION IN CASE YOU'RE
INTERESTED IN ATTENDING THIS IN
FEBRUARY.
IT'S USUALLY HYBRID SO PLEASE
DO.
SO THE NEXT SLIDE, I'M GOING TO
GET INTO ROUNDING OUT HERE ON
WHAT NCATS IS, WORKING ON IN
THIS SPACE.
AND THINKING ABOUT MORE BROADLY
FOR CLINICAL AND TRANSLATIONAL
SCIENCES.
63 HUBS ACROSS THE COUNTRY AND
THEY ARE REALLY HERE TO THINK
ABOUT HOW TO DO A LOT MORE ABOUT
THE INFRASTRUCTURE, PROMOTE
TRAINING AND CAREER SUPPORT AND
REALLY NURTURE THE FIELD OF
TRANSLATIONAL SCIENCE.
SO IF YOU GO TO THE NEXT SLIDE,
AND THEN HIT THE NEXT BUTTON,
BASICALLY THERE ARE LOCAL
STRENGTHS ACROSS THESE
INSTITUTIONS THAT ENABLE THEM TO
COME TOGETHER COLLECTIVELY IN A
REGIONAL LEVEL, NATIONAL LEVEL,
TO ADDRESS OUR VARIETY OF
ACTIVITIES FROM HEAL TO COVID,
MOBILE TECHNOLOGIES, TELEHEALTH,
TELEMEDICINE, BUT THERE IS A LOT
OF ACTIVITY TOWARDS CHILD
HEALTH.
SO I WANTED TO SPEND TIME
TALKING ABOUT THAT.
SO THE NEXT SLIDE IS THAT THERE
IS QUITE A BIT OF PEDIATRIC
REACH OF THE CTSA PROGRAM.
OF THE 63 HUBS, 53 OF THEM HAVE
AN ASSOCIATED CHILDREN'S
HOSPITAL AND 10 OF THOSE HAVE A
PARTNERSHIP WITH THEM.
WE HAVE 13PIs OUR PEDERA
TRISHANCE AND WE HAVE A VARIETY
OF TRAINING AND CAREER SCHOLARS
AS WELL.
IT'S THIS LAST GROUP THE
TRAINING COLLARS I WANTED TO
HIGHLIGHT FOR THE NEXT SLIDE.
THERE IS A GROUP AT THE
UNIVERSITY OF ARKANSAS MEDICAL
SCHOOL.
THEIR TRAINING PROGRAM IS --
THEY HIGHLIGHT
ENTREPRENEURIALSHIP WITHIN THEIR
TRAINING PROGRAM.
AND THIS GROUP OF SCHOLARS CAME
TOGETHER, THESE ARE ALL TRAINEES
THAT KIM TOGETHER AS A GROUP AND
FORMED A SMALL BUSINESS CALLED
PEDIATRICCA THERAPEUTICS.
AND THEIR EMPHASIS HERE IS
LOOKING AT THE ISSUE OF
WITHDRAWAL.
SO WHAT THEY HAVE DONE IS TAKEN
ABOVE NOR 15 -- ABOVE MORPHINE
AND THEY TWEAKED IT SO THAT THEY
HAVE THE BUPRENORPHINE.
IT DOESN'T REALLY EFFECT MUCH OF
THE FUNCTION OF THE DRUG BUT IT
EFFECTS THE METABOLISM OF IT.
AND IT TURNS OUT THAT THAT BUTTE
RATED COMPOUND DOES NOT
METABOLIZE AND GET INTO THE
FETUS OR THE NEONATE FOR ANY OF
THAT COMPOUND.
SO IT REDUCES THAT NEONATAL
OPIOID EXPOSURE.
THIS WAS TESTED IN ANIMALS AND
NOW THE NEXT PHASE IS TO LOOK AT
HUMANS.
SO THIS IS AN EXCITING
DEVELOPMENT OF LOOKING AT THIS.
SO EXCITED ABOUT THAT.
AND THEN THE NEXT SLIDE I'M
GOING TO GET BACK TO DATA
SCIENCE AND THEN END ON SOME
GENOMICS.
THE OTHER ACTIVITY THAT THE CTSA
DID, CAME TOGETHER AND DURING
THE PANDEMIC, AND THEY BASICALLY
HAVE ACCESS TO OVER 250 MILLION
LIVES THROUGH THEIR HEALTH CARE
SYSTEMS.
WE WANTED TO FIGURE OUT HOW TO
LEVERAGE THAT.
AND SO WE DEVELOPED NATIONAL
COVID COLLABORATOR OR NGC.
WE HAVE OVER 20 MILLION PEOPLE
WITHIN THIS PARTICULAR ENCLAVE.
IT'S SPECIFIC TO COVID.
BUT WE HAD ALL COMMERCE, ALL
AGES ARE REPRESENTED IN THIS
ENCLAVE.
AND IF YOU LIKE TO LEARN MORE,
THERE IS A DASHBOARD YOU CAN
LOOK AT THE QR CODE FOR EXAMPLE
IF YOU LIKE TO LEARN MORE.
IT'S ESSENTIALLY ALL OF THE
THINGS THAT YOU CAN GET INTO IN
ELECTRONIC HEALTH RECORD BUT WE
ALSO BRING IN CMS DATA, VACCINE
DATA, VIRAL VARIANT DATA,
ET CETERA, TO ADD TO THE DEPTH
OF DATA THAT IS ALREADY THERE TO
HAVE A GOOD UNDERSTANDING OF THE
IMPACTS OF THE PANDEMIC ON ALL
DIFFERENT ASPECTS OF THE
LIFESPAN.
AND SO IF YOU GO TO THE NEXT
SLIDE, THERE HAVE BEEN A COUPLE
OF REALLY NICE STUDIES THAT HAVE
COME OUT OF THIS PARTICULAR
PROGRAM THAT HAVE RELATED TO
PREGNANCY OR CHILD HEALTH.
AND SO I JUST HIGHLIGHTED THOSE
HERE AGAIN THAT YOU CAN LOOK AT,
AT YOUR LEISURE.
BUT IT'S ANYWHERE FROM LOOKING
AT VACCINES IN PREGNANT WOMEN OR
COVID SYMPTOMS IN PREGNANT WOMEN
ALL THE WAY THROUGH TO LOOKING
AT THE LISC COMPARED TO THE
COVID DISEASES THAT WE SAW AND
UNDERSTANDING THE DISTINCTIONS
THERE IN.
SO, THERE HAVE BEEN A VARIETY OF
ACTIVITIES.
I JUST PULLED THESE FOR
HIGHLIGHTS, NOT
NECESSARILY - AUTO WHOLE BODY OF
THE WORK BUT THERE IS QUITE A
LOT THERE.
SO IF YOU GO TO THE NEXT SLIDE,
I'M GOING TO END ON TWO
VIGNETTES OF OTHER ACTIVITIES
THAT ARE BEING SUPPORTED THROUGH
THE CTSA PROGRAM.
AGAIN, THE MAGNITUDE AND BREATH
OF THE INFRASTRUCTURE THEY HAVE,
IT'S NOT THE SAME EVERYWHERE.
BUT WE CAN LEVERAGE THOSE
STRENGTHS TO BROADER ACTIVITIES
THAT WE SUPPORT THE PROGRAM.
AND ONE OF THOSE IS HIGHLIGHTED
HERE.
THIS IS ALSO COFUNDED THROUGH
NICHD BUT LOOKING AT THE
IMPLEMENTATION OF WHOLE GENOME
SEQUENCING AS A SCREENING TOOL
IN A DIVERSE COHORDE OF HEALTHY
INFANTS TO REALLY THINK ABOUT
HOW WHOLE GENOME SEQUENCING
MIGHT BE USED FOR NEWBORN
SCREENING PROGRAMS.
THE ETHICS AROUND THAT.
THIS IS THE KIND OF EVIDENCE WE
NEED TO START TO THINK ABOUT HOW
TO USE THAT TO INFORM POLICIES.
THIS IS WHY THIS KIND OF WORK IS
SO IMPORTANT.
AND THEN THE NEXT SLIDE BRINGS
IT ALL HOME AGAIN IN TERMS OF
WHY SEQUENCING AND NOT JUST
BABIES THAT MIGHT HAVE A
PARTICULAR CONDITION, BUT
PERHAPS ALL BABIES AT SOME POINT
I HOPE WE WILL BE ABLE TO GET
THERE.
SO THIS IS A STORY ABOUT AN
INFANT, FIVE WEEKS OLD, HEALTHY
MALE.
ADMITTED AFTER TWO HOURS OF
INCONSOLABLE CRYING AND
IRRITABILITY.
THEY DID A CAT SCAN AND FOUND
THAT DOWNWARD IDEATION WHEN HE
CRIED.
SO THAT WAS PRETTY INDICATIVE OF
WHAT THIS MIGHT BE.
IF YOU CLICK THE NEXT -- THERE
IS AN IN FEN TILE ENCEPHALOPATHY
ASSOCIATED WITH THIS.
THERE ARE 1500 OF THESE.
HOW DO YOU FIND THE TREATMENTS?
THE BEST WAY TO DO THAT, FASTEST
WAY TO DO THAT IS THROUGH --
THIS WAS THROUGH SCRIPPS IN THE
CHILDREN'S HOSPITAL WHICH IS
WORLD-RENOWNED FOR DOING THIS.
THE NEXT ONE.
13 HOURS THEY WERE ADMITTED THEY
STARTED SEQUENCING AND THEN THEY
HAD THE RESULTS AND FOUND IT WAS
A THIGH MEAN METABOLISM
DYSFUNCTION SYNDROME CAUSING
THIS ENCEPHALITIS.
WE KNOW HOW TO TREAT THAT.
THE NEXT SLIDE SHOWS SIX HOURS
AFTER THE SEQUENCES WERE READ
AND INTERPRETED, THIGH MEAN WAS
ADMINISTERED AND THEREAFTER HE
WAS ALERT, CALM AND
BOTTLE-FEEDING AND BACK TO
NORMAL.
THIS IS THE POWER OF GENETICS.
I'M GOING TO END ON ONE MORE
SLIDE WITH A CALL TO ACTION AND
A PLEA FOR YOU.
NCATS IS UNDERGOING A STRATEGIC
PLANNING PROCESS AS WE SPEAK.
AND WE HAVE ENGAGED A VARIETY
STAKEHOLDERS.
WE ARE NOT YET TALKING TO THE
ICs YET.
WE ARE GETTING READY TO DO THAT.
THAT'S OUR NEXT STEP.
BUT WE HAVE BEEN DOING A LOT OF
OUR KEY STAKEHOLDERS TO DO THIS
NOW.
WE ARE ALMOST AT THE STAGE WHERE
WE HAVE A REQUEST FOR
INFORMATION THAT WILL GO
PUBLICLY AND I WOULD LOVE IT IF
WE WOULD HAVE THE NOD TO SEND IT
TO YOU ALL TO PERHAPS TAKE A
LOOK AND THE GIVE YOUR INSIGHTS
AND INPUT INTO OUR STRATEGIC
PLAN.
THAT IS MY ASK OF YOU TODAY AND
I HOPE YOU CONSIDER DOING THAT.
AND WITH THAT, I JUST GO BACK TO
THE PUBLIC HEALTH CHALLENGE.
OVER 10,000 DISEASES.
WE HAVE A MOUNTAIN TO CLIMB.
BUT WORKING TOGETHER AND SORT OF
THE PROMISE AND HOPE WE HAVE IN
SOME OF THESE HIGHLIGHTS, I
THINK IT WILL HELP US CLIMB THAT
MOUNTAIN AND IT WILL HELP US
MOVE MORE MOUNTAINS AND THAT IS
REALLY OUR -- SO WITH THAT, I
REALLY THEY FOR YOUR ATTENTION
AND I'M HAPPY TO ANSWER ANY
QUESTIONS.
[ APPLAUSE ]
>>SHERRY FOR VIRGINIA
COMMONWEALTH UNIVERSITY CHAIRMAN
OF PEDIATRICS THERE.
THANK YOU VERY MUCH.
SO MUCH TO THINK ABOUT.
VERY EXCITING TIME.
WE NOW HAVE ALL THESE TOOLS AND
TECHNOLOGY THAT WE DIDN'T HAVE
EVEN FIVE YEARS AGO.
SO I WANTED TO HEAR A LITTLE
BIT, WE TALK ABOUT BIG DATA AND
THEN BIG-SMALL DATA.
WE HAVE BIG DATA ACROSS
INDIVIDUALS.
WE HAVE BIG SMALL DATA WITHIN
INDIVIDUALS THAT WE CAN USE WITH
ALL OF THE WEARABLE, MEASURABLE
PARTS OF HOW WE WALK IN THIS
WORLD NOW.
SO MY QUESTION TO YOU IS, HOW DO
WE STAY AHEAD OF UNDERSTANDING
THE BEST USE OF AI AND DEEP
MACHINE LEARNING, PLUS THE OTHER
TOOLS SO THAT AS DANIELLE SAID,
WE CAN KNOW WHEN TO THINK SLOW
AND WHEN WHEN TO THINK FAST.
>>I'M ONE OF THE SLOW THINKERS.
I REALLY APPRECIATE THAT
QUESTION.
IT'S A GOOD ONE.
I DON'T KNOW THAT WE REALLY
FIGURED IT OUT YET AND I STILL
THINK THAT WE HAVEN'T SOLVED THE
AI ISSUES EITHER.
I THINK THERE IS STILL A LOT OF
HYPE THERE.
WE HAVE A LOT OF -- WE ARE
BASING IT ON A LOT OF DNA THAT
HAS A LOT OF MISSINGNESS IN IT.
SO PART OF OUR THOUGHT IN THIS
SPACE IS TO UNDERSTAND HOW WE
CAN BRING ABOUT MORE
TRANSPARENCY TO WHAT THE DATA
ARE THAT IS GOING INTO
DEVELOPING ALGORITHMS SO WE CAN
SURFACE THE BIASES OR ISSUES
THAT ARE ASSOCIATED WITH THEM.
IF NOT TO OVERCOME THEM, KNOW
ABOUT THEM.
SO THAT'S ONE AREA THAT WE ARE
THINKING ABOUT.
THE OTHER AREA ON WEARABLES IS A
GREAT QUESTION.
AND I THINK THERE IS A LOT OF OF
VALUE TO THINKING ABOUT THE USE
OF WEARABLES AND OTHER KINDS OF
TECHNOLOGIES LIKE TELEHEALTH AND
TELEMEDICINE THAT ARE ALSO SORT
OF REALLY IMPORTANT TO BE
THINKING ABOUT REACHING
COMMUNITIES THAT WE DON'T OFTEN
REACH.
WE THINK ABOUT ALL OF OUR
STUDIES IN ACADEMIC MEDICAL
CENTERS OR AROUND ACADEMIC
MEDICAL CENTERS BUT GETTING OUT
INTO THE RURAL COMMUNITIES AND
UNDERSERVED COMMUNITIES,
WEARABLES, MOBILE HEALTH
TECHNOLOGY, TELEHEALTH AND
TELEMEDICINE, THESE MIGHT BE
THESE THINGS THAT CAN REALLY
HELP US THINK ABOUT EVEN GOING
INTO DECENTRALIZED TRIALS OR
DECENTRALIZED RESEARCH
APPROACHES WE CAN DO.
SO I THINK THE PROMISE IS THERE.
AND AT THE SAME TIME, SO
THINKING VERIES FAST THINKING.
I LIKE THAT WAY OF THINKING
ABOUT THAT.
IT'S THAT VELOCITY.
SO THINKING ABOUT THE WEARABLES.
WE WEAR THESE WATCHES.
EVERYBODY HAS THEIR WATCH ON.
I STOPPED USING IT AS MUCH AS I
USED TO.
I'M A EARLY ADAPTER AND NOW I
DON'T USE IT AS MUCH AS I HAVE
BEFORE.
MAINLY BECAUSE NOW I THINK I
CHANGED MY BEHAVIOR ENOUGH THAT
I'M ABLE TO KNOW WHAT IS THE
ISSUE OR NOT.
DID I NOT GET SLEEP LAST NIGHT?
PROBABLY -- DUH!
SO I THINK THAT THESE WEARABLES
ARE GOOD FOR THOSE SORTS OF
THINGS.
AND AS WE GET MORE SOPHISTICATED
IN THAT WE CAN HIGHLIGHT DEVICES
THAT CAN TAKE A LOOK AT YOUR
ANEMIA, FOR EXAMPLE.
TAKE PHOTOS OF YOUR NAIL BEDS
AND LOOK AT ANEMIA, THERE ARE A
VARIETY OF WAYS IF WE DON'T DO
EVERYTHING, WE HAVE A CHANCE.
IF WE THINK ABOUT WHAT IS THE
QUESTION WE'RE ASKING, WE HAVE A
CHANCE.
SO I THINK IT'S THE SLOW
THINKERS THAT CAN PROBABLY HELP
US GET TO THE QUESTIONS WE NEED
TO ASK AND THEN THE FAST
THINKERS TO SAY THIS IS HOW TO
DO IT.
IT'S THINKING ABOUT COMBINED
IDEAS.
>>I APPRECIATE THAT ANSWER AND
I JUST HAVE A CALL FOR ACTION
FOR NIH ABOUT HOW WE THINK
TOGETHER ACROSS ALL THE ICs
AND CREATING GUARDRAILS ABOUT AI
AND UNDERSTANDING WHEN SILENT
BEST APPLICATION OF THAT AND
WHEN MAYBE IS IT NOT A GOOD
APPLICATION.
>>ABSOLUTELY.
WITH THE WORK ON THE ELECTRONIC
HEALTH RECORDS FOR EXAMPLE,
THERE HAS BEEN A LOT MORE
ACTIVITY IN THINKING ABOUT
ARTIFICIAL INTELLIGENCE AND
MACHINE LEARNING FOR ADOPTING
ALGORITHMS TO IDENTIFY PEOPLE
WHO MIGHT BE MORE SEVERE OR AT
RISK FOR CERTAIN DISEASE.
THERE AGAIN I THINK WE NEED TO
BE CAUTIOUS ABOUT THAT AND WE
NEED TO DO A LOT OF VALIDATION
AROUND THAT.
AND WE HAVEN'T DONE ENOUGH YET.
I THINK WE WERE STARTING TO
RECOGNIZE THAT BECAUSE IT HASN'T
REALLY RISEN TO THE LEVEL THAT
WE KIND OF ALL EXPECTED IT TO DO
ABOUT FIVE YEARS AGO, RIGHT?
BUT I THINK THIS IS SOMETHING
THAT WILL GET THERE AND I'LL
JUST SAY, TOO, SINCE WE ARE
TALKING ABOUT BIG DATA HERE; THE
VERY SMALLEST ASPECTS OF DATA
SCIENCE TO ME, ARIAN TOUGH.
QUANTUM.
THERE ARE QUANTUM BASED
APPROACHES USING QUANTUM
COMPUTING THAT MIGHT BE VERY
BENEFICIAL FOR US IN LOOKING AT
DATA IN WAYS WE HAVEN'T BEEN
ABLE TO DO BEFORE AND HIGHLIGHT
THOSE ISSUES OF BIAS AND MISSING
MORE READILY BUT IN A WAY THAT
MIGHT IDENTIFY HOW TO GO OUT AND
FIND THOSE AND FILL IN THE
MISSING PIECES.
I THINK THERE IS EVEN MORE TO
COME IN THIS SPACE.
>>IN THE INTEREST OF TIME, I
DON'T WANT TO CUT TOO MUCH INTO
YOUR BREAK.
WE STILL HAVE A LOT THIS
AFTERNOON.
SO JONI, I REALLY WANT TO THANK
YOU FOR INFORMATION-PACKED TALK.
AND I DON'T KNOW IF YOU HAVE THE
TIME TO STAY FOR A FEW MINUTES
IF PEOPLE WANT TO ASK QUESTIONS
DURING THE BREAK.
>>ABSOLUTELY.
>>SO NOW WE'LL TAKE A 15-MINUTE
BREAK AND WE WILL RETURN TO THE
ROOM AT 2:45.
>>THANK YOU VERY MUCH.
NEXT, WE ARE GOING TO HEAR FROM
OUR BRAND NEW NICHD DIRECTOR OF
CLINICAL RESEARCH IN THE
DIVISION OF INTRAMURAL RESEARCH
AND THAT IS DR. CATHERINE
GORDON, WHO LITERALLY JOINED
NICHD YESTERDAY.
COMING FROM THE BAYLOR COLLEGE
OF MEDICINE WHERE SHE WAS
PROFESSOR OF PEDIATRICS, SHE'S
HIGHLIGHTY RATTERRED FOR HER
PIONEERING RESEARCH ON BONE
HEALTH AND BONE LOSS IN PEOPLE
WITH EATING DISORDERS.
SHE HAS PARTICULAR FOCUS ON WAYS
TO PREVENT OSTEOPOROSIS AND TO
OPTIMIZE FACTORS THAT ARE
CRITICAL FOR BONE DEVELOPMENT.
SUCH AS NUTRITION AND EXERCISE.
FOR MORE THAN TWO DECADES,
DR. GORDON LED HER OWN NIH
FUNDED RESEARCH PROGRAM IN
ADOLESCENT BONE HEALTH AND
REPRODUCTIVE ENDOCRINOLOGY.
SHE IS A FAMILIAR FACE TO THOSE
OF YOU WHO HAVE LONGEVITY HERE
BECAUSE SHE SERVED AS THE KEY
MEMBER OF OUR ADVISORY COUNCIL
FROM 2016-2020.
ALSO VERY ACTIVE IN OUR PRIOR
STRATEGIC PLANNING PROCESS AND
CONTRIBUTED TO THE CREATION OF
OUR NEW MISSION AND VISION
STATEMENTS THAT WERE UNVEILED IN
2020.
DR. GORDON RECEIVED HER MD FROM
THE UNIVERSITY OF NORTH
CAROLINA-CHAPEL HILL AND HER MSC
FROM HARVARD MEDICAL SCHOOL.
SHE COMPLETED HER RESIDENCY IN
GENERAL PEDIATRICS AND COMBINED
FELLOWSHIP IN PEDIATRIC
ENDOCRINOLOGY AND ADOLESCENT
MEDICINE AT BOSTON CHILDREN'S
HOSPITAL AND HER TALK TODAY IS
TITLED, YOUNG WOMEN'S HEALTH,
SUPPORTING ADOLESCENTS, YOUNG
ADULTS AND THEIR FAMILIES.
WELCOME DR. GORDON.
>>THANK YOU, SO MUCH
DR. BIANCHI.
IT'S SO NICE TO BE HERE.
WHEN I ROTATED OFF THE COUNCIL,
SOME OF YOU WERE JUST STARTING
SO IT'S REALLY GREAT TO SEE YOU
AGAIN.
THANK YOU TO DR. BIANCHI AND
DR. BANE AND DR. MENSA IN THE
BACK WHO WAS OUR ACTING CLINICAL
DIRECTOR JUST FOR THE WARM
WELCOME, EVERYONE.
IT'S BEEN JUST INCREDIBLE AND
GREAT TO BE HERE.
I'M GOING TO GIVE YOU A LITTLE
BACKGROUND ABOUT MYSELF AS A
SCIENTIST, AS A LEADER, MY
SCIENTIFIC INTERESTS AND THEN
LAUNCH INTO MY VISION STATEMENT,
MY VISION FOR THE NICHD AS THE
CLINICAL DIRECTOR, THINKING
ABOUT HOW TO SUPPORT CLINICAL
INVESTIGATORS, CLINICAL
TRANSLATIONAL SCIENTISTS, SOME
NEW SCIENTIFIC INITIATIVES AND
IDEAS WE HAVE IN TRYING TO ALIGN
IT WITH THE STRATEGIC PLAN.
AND I WILL SAY DR. BIANCHI AND
BANE DIDN'T LOOK AT EACH OTHER'S
SLIDES BUT THERE IS A REMARKABLE
ECHOING OF SOME OF THE POINTS.
SO I'M ORIGINALLY FROM NORTH
CAROLINA.
BOTH MY PARENTS WERE TEACHERS.
SO BEING A RESEARCHER, BEING A
MENTOR, GOING INTO MEDICINE
REALLY CAME NATURALLY.
AS DR. BIANCHI MENTIONED, I DID
MY UNDERGRADUATE IN MEDICAL
SCHOOL IN NORTH CAROLINA AND
THEN NORTH TO BOSTON AND STAYED
A LONG TIME, DID MY PEDIATRIC
RESIDENCY, DR. ROW ETCH WAS A
FELLOW WHEN I WAS A RESIDENT AND
HELPED TO GET ME INTO CLINICAL
RESEARCH.
I WANTED TO GIVE HIM THAT SHOUT
OUT AND THEN PURSUED THE DUAL
FELLOWSHIP ENDOCRINOLOGY IN
ADOLESCENT MEDICINE AND THEN
DURING MY FELLOWSHIP GOT A
MASTERS IN CLINICAL
INVESTIGATION.
SO HERE I AM.
I'M A GROWNUP SUMMER INTERN.
SO CIRCA 1984 I WORKED IN
BUILDING 38, THE NATIONAL
LIBRARY OF MEDICINE.
THAT BUILDING HASN'T CHANGED A
LOT.
AND INTERESTINGLY, AT LEAST ON
THE OUTSIDE, HAVEN'T BEEN INSIDE
A LONG TIME, ITCHES A VOLUNTEER
ON THE PEDIATRIC CANCER WARD IN
THE CLINICAL CENTER AND MY
OFFICE IS NOW IN THE CLINICAL
CENTER.
SO LIFE HAS REALLY COME FULL
CIRCLE.
I WANTED TO SAY THAT EXPERIENCE
WAS SO TRANSFORMATIVE FOR ME,
REALLY CONFIRM MY WANTING TO GO
INTO MEDICINE AND FOR THE FIRST
TIME THINKING ABOUT RESEARCH AND
COMBINING THE TWO.
SO SUPPORTIVE OF HOW TO KEEP
PROGRAMS STRONG.
IT'S WHEN I THINK OF THE WORK
THAT I DO, TRAINED AS A
CLINICIAN, EVENTUALLY TRAINING
AS A RESEARCHER.
ENJOY TEACHING STUDENTS AND
RESIDENTS AND FELLOWS.
LOVE MENTORING.
AND THEN HAVE ENJOYED
INCREASINGLY GETTING INTO
ADMINISTRATIVE ROLES.
AND I SEE A LITTLE OPPORTUNITY
FOR ADVOCACY AND ADMINISTRATIVE
ROLE.
AND I HAVE A FAMILY.
MY HUSBAND, BOB, TO THE LEFT OF
ME, THOMAS IS A BASKETBALL
PLAYER WHO LIVES IN DC.
MY SON JACK IN ARIZONA IN
COLLEGE.
AND MY CAT, MOLLY.
WE ALWAYS HAD A CAT OR A DOG.
VERY SENSITIVE TO WORK LIFE
BALANCE ISSUES INTEGRATION AND
REALLY IMPORTANT TO THINK ABOUT
THAT AS WE BUILD TEAMS.
EVERY YOUNG SCIENTIST, MORE
SENIOR SCIENTISTS WILL HAVE
DIFFERENT ISSUES WITH CARE
GIVING AND MAYBE THEIR CAREER.
AND IT'S IMPORTANT TO MEET
PEOPLE WHERE THEY ARE TO MAKE
SURE THEY ARE THE MOST
PRODUCTIVE.
AFTER MENSA AND I TALKED ABOUT
WELLNESS AND PROMOTING PROGRAMS
AROUND WELLNESS AND REALLY
TAPPING INTO EVERYONE'S PERSONAL
SITUATION.
FRESH OUT OF FELLOWSHIP, I HAD
THE OPPORTUNITY AT BOSTON
CHILDREN'S TO TAKE ON MY FIRST
LEADERSHIP ROLE AND IT WAS ONE
OF THOSE I HAD BEEN USING A
DEXASCANSER TO MEASURE BONE
DENSITY AND WAS ASKED TO LEAD
THE PROGRAM BECAUSE BOSTON
CHILDREN'S WAS GETTING THE
SCANNER.
AND DIDN'T FEEL LIKE I KNEW THAT
MUCH ABOUT DEXA, BUT REALLY
LEARNED QUICKLY AND GREW INTO
THAT ROLE GETTING OUT OF ONE'S
COMFORT ZONE, PUSHING BACK THE
IMPOSTOR SYNDROME AND LEADING A
PROGRAM.
AND IT HAD A CLINICAL AND
RESEARCH COMPONENT.
AND REALLY LEARNED A LOT ABOUT
USING THAT TOOL.
WE USED CLINICALLY AS WELL AS
FOR RESEARCH AND THEN YOU CAN
SEE THERE ON THE BOTTOM LEFT,
PERIPHERAL QUANTITATIVE
COMPUTATIVE TOMOGRAPHY SCANNER,
PQCT, WHICH ENABLES US TO LOOK
AT THE PERIPHERAL SKELETON.
CHILDREN AND ADOLESCENTS TEND TO
FRACTURE ARMS AND LEGS, NOT HIP
AND SPINE.
IT WAS NICE TO INTEGRATE THE TWO
TOOLS.
THEN I GOT INTERESTED AGAIN, I
DID A FULL YEAR OF MEDICINE AS A
FELLOW, FULL YEAR OF
ENDOCRINOLOGY, LEARNED THAT
ANOREXIA NERVOSA, RESTRICTED
EATING DISORDERS ARE A PUBLIC
HEALTH ISSUE.
I SAW MANY PATIENTS PRESENTING
WITH AMEN RIA, LACK OF PERIODS,
BONE LOSS, STRESS FRACTURES AND
GOT INTERESTED AS AN
ENDOCRINOLOGIST AND WHY IS THIS
HAPPENING, WHAT IS THE HORMONAL
COMPONENT.
SO BEGAN DOING WORK TRYING TO
NON-INVASIVELY LOOK AT THE BONE
MARROW AND THE STEM CELLS AND
WHAT HORMONAL DRIVERS ARE GOING
TO EFFECT BURN TURNOVER.
WE LEARNED FROM OUR STUDIES AND
CONFIRMED BY OTHERS, STUDYING
ADULTS, THAT THE MSCs ARE
SHUNTED TOWARDS FAT, TOWARDS
DIFFERENTIATED HEP OOCYTES
RATHER THAN OSTEOBLAST AND THAT
EXPLAINS WHY BONE FORMATION IS
LOW IN ALL THESE STUDIES.
ONE MIGHT ASK WHY WOULD A THIN
PURPOSE HAVE FAT IN THEIR BONE
MARROW?
MAYBE IT'S A COMPENSATORY
MECHANISM, A WAY TO KEEP WARP,
BUT AT THENCE EXPENSE OF
INFLAMMATION.
I HAVE OVER THE PAST YEAR,
DR. BIANCHI MENTIONED I HAVE
BEEN AT BAYLOR, HAVE HAD A
BLAST.
A LOT OF FUN AS A SCIENTIST WITH
A HIGH RESOLUTION PQCT SCANNER
AND I'M GRATEFUL FOR SAYING YES
TO PURCHASE ONE FOR THE
INTRAMURAL TRAM.
THIS ALLOWS TO GET A TOTAL BONE
DENSITY AND LOOK SPECIFICALLY
WITHIN THE CORTICOAND
CONVECTULAR COMPARTMENTS OF
BONE.
YOU SEE SOME OF THE IMAGES HERE
AND THAT IS GOING TO HELP US TO
UNDERSTAND FRACTURE RISK IN A
NUMBER OF DIFFERENT:CALL MODELS.
AND I FEEL LIKE I HAVE BECOME
THE NEW CD WITH THE TOOL.
I HAVE ALREADY GOT SOME E-MAILS.
A LOT OF INTEREST, EVEN FROM
OTHER INSTITUTES AND
COLLABORATING WITH NICHD AND
LAUNCHING SOME OF THESE STUDIES.
SO THANK YOU FOR THAT.
JUST SPEAKING ABOUT RARE
DISEASES, HAD A GREAT
OPPORTUNITY OVER THE PAST COUPLE
OF DECADES TO WORK WITH CHILDREN
WITH PROGERIA.
WHICH IS MANY OF YOU KNOW, IS A
RARE FATAL GENETIC CONDITION.
THESE CHILDREN DEVELOP WHAT
SEEMINGLY EARLY AGING AND THEN
DIE OF CARDIOVASCULAR EVENTS
VERY EARLY IN THEIR LIFE.
AND TYPICALLY DURING THE
TEENAGED YEARS.
AT BOSTON CHILDREN'S WHEN I WAS
THERE AND CONTINUE TO WORK WITH
THEM, WE HAVE BEEN TRYING TO
IDENTIFY CHEMO THERAPEUTIC AGENT
TO PROLONG THE LIFE OF THESE
CHILDREN.
WE GOT AN FDA INDICATION ABOUT A
YEAR AND A HALF AGO, WHICH WAS
REALLY AN EXCITING DAY.
THESE PATIENTS HAVE A MUTATION
WHICH CREATES CRIMMIC SPLICE
SITE IN THE LMNA GENE.
THEY ALSO MAKE PRO GERIAN, AN AB
RANT PROTEIN AND THERE IS
NUCLEAR MEMBRANE DISTORTION IN
CELLS THROUGHOUT THE BODY.
MY ROLE AS A SCIENTIST WAS TO
THINK ABOUT THE SKELETAL
PHENOTYPE AND EVEN BEFORE WE
LOOKED AT THE DATA FOR BONE
DENSITY, WE JUST EXAMINED OUR
SKELETAL IMAGES AND YOU CAN SEE
THE ERROR IN THERE.
THIS IS THE RADIUS OF A CHILD
WITH PROGERIA VERSUS THE
CYLINDRICAL SHAPE OF A HEALTHY
CONTROL AND AS I HOOK AS WE MOVE
UP THE ARM MEASURING THE RADIAL
BONE TOWARDS THE SHOULDER.
SO VERY DIFFERENT BONE
MORPHOLOGY AND THAT PROBABLY
LONG TERM IMPACTS THE FRACTURE
RISK.
THEY ALSO DEVELOP THESE EXTRA
CELLULAR CALCIFICATIONS AT THE
TIPS OF THEIR FINGERS
RADIOGRAPHICSALLY.
WE HAVE BEEN TRYING TO
UNDERSTAND THEIR CALCIUM CONTENT
AS WELL.
I THEN GOT INTO WHAT HAS BECOME
A CONTROVERSIAL AREA OF BONE
HEALTH AND TRANSGENDER YOUTH.
AND I THINK PART OF THE
CONTROVERSY IS NOT HAVING THE
DATA.
SO THE QUESTION IS, WHAT HAPPENS
WHEN WE BLOCK SIGNALS AS A YOUNG
PERSON.
WE HAVE THE ABILITY TO PRESCRIBE
RELEASING HORMONE AGONIST WHICH
WILL BLOCK TESTOSTERONE AND IT
BLOCKS PUBERTY.
IT'S A LIFESAVER WITH GENDER
DYSPHORIA.
WHAT HAPPENS LONG TERM?
WE ARE USING THE SAME PROTOCOL
THAT WE USED FOR OUR ANOREXIA
STUDIES LOOKING AT BONE MARROW,
BONE DENSITY EFFECTS PERIPHERAL
AND PQCT AND THE STUDY IS
ONGOING.
THE INTRAMURAL PROGRAM WE PASSED
ON THE TORCH TO DR. AMY AND WE
ARE ABOUT FOUR YEARS INTO AN R
RO1.
NEXT ONE OF MY MOST EXCITING
NEXT STEPS IS THE CO-DIRECTOR IN
MY OWN RESEARCH PROGRAM IS TO
LAUNCH A CENTER FOR PREMATURE
OVARIAN INSUFFICIENCY, EARLY
MENOPAUSE IN ADOLESCENT GIRLS.
IT'S ALREADY KNOWN FOR HEALTHY
WOMAN DISORDER AND REALLY
BUILDING THAT WITH DR. LOBO
THINKING ABOUT ADOLESCENTS WHO
HAVE POI FROM A NUMBER OF
DIFFERENT ETIOLOGIES.
SO MY VISION IS TO MAKE NICHD A
NUMBER 1 RESEARCH DESTINATION
CENTER FOR POI.
AND IN PARTICULAR TO FILL
KNOWLEDGE GAPS AROUND ESTROGEN
REPLACEMENT THERAPY.
WHAT WE CURRENTLY PRESCRIBE IN
THE CLINICS IS BASED ON
ANECDOTAL INFORMATION.
WE HAVE A OPPORTUNITY TO GET
DATA ON WHAT TYPE OF ESTROGEN TO
USE, HOW FAST TO ESCALATE
DOSING, WHEN TO ADD
PROGESTERONE.
A LOT OF THIS IS WEIGHTING OF
HANDS, DEPENDING ON WHICH
ENDOCRINOLOGIST OR GYNECOLOGIST
YOU ASK.
WE CAN LOOK AT THE BROAD
SPECTRUM.
THOSE WITH POI FROM UNKNOWN
CAUSES FROM INDUCED BY
CHEMOTHERAPY OR FROM GENETIC
SYNDROMES.
SO IT'S A REAL OPPORTUNITY TO
ENGAGE PEDIATRICIANS AND
GYNECOLOGISTS WITHIN THE NICHD.
AND LASTLY, OVER THIS PAST YEAR
FROM SOME OF THE WORK I HAVE
BEEN DOING IN HOUSTON, I LEARNED
AND THINKING ABOUT POSTPARTUM
DEPRESSION AND ADOLESCENT
MOTHERS.
THE PREVALENCE OF PPD APPEARS TO
BE DOUBLE THAT SCENE IN ADULTS
BUT WE ONLY HAVE SPARSE DATA TO
SUPPORT WHAT I JUST SAID.
AND IMPORTANTLY, TO THINK ABOUT
THE BIOLOGICAL, PSYCHOLOGICAL
UNDERLYING RISK FACTORS, HOW THE
BODY MASS INDEX FACTORS INTO
THAT LOW OR HIGH BMI AND
THINKING ABOUT THE SOCIAL
DETERMINANTS OF HEALTH.
UNFORTUNATELY, WE MAY SEE MORE
TEENAGE PREG SEIZE AFTER THE
OVERTURN OF ROE v. WADE SO
IT'S A VERY TIMELY ISSUES THAT
RESONATES WITH THE STRATEGIC
PLANNED THEME, SETTING THE
FOUNDATION FOR HEALTHY
PREGNANCIES.
THERE HAS ANYONE A LOT OF TALK
AND GREAT DISCUSSION TODAY ABOUT
SUPPORTING THE CLINICAL
RESEARCH, THE RESEARCH PIPELINE
OR SOMETIMES CALLED A PATHWAY.
AND FROM BEING OF THE FRA MURAL
SIDE, I HAVE SEEN OVER AND OVER
THAT THE KEY TO SUCCESS AT TOP
RESEARCH INSTITUTIONS IS TO
ATTRACT THE TRAINEES WHO THEN
GROW UP TO BECOME THAT
SCIENTIFIC LEADER.
BUT THERE NEEDS TO BE THE
INFRASTRUCTURE THAT ALLOWS
TRAINEES AND NEUROSCIENTISTS TO
SUCCEED.
DR. McBAIN REALLY NICELY
OUTLINED A LOT OF THE PROGRAMS
THAT ARE ONGOING AND ALSO
IMPORTANTLY HE MENTIONED TRYING
TO TARGET THOSE WHO ARE UNDER
REPRESENTED IN MEDICINE OR
SCIENCE.
TRYING TO ATTRACT MORE WOMEN,
MORE GIRLS, THE VOICE OF THE
PARTICIPANT IS BACK THERE, GIRLS
GOING INTO SCIENCE AND
UNDERREPRESENTED MINORITIES AND
REALIZING THAT THESE GROUPS MAY
NOT HAVE HAD THE SAME EARLY
OPPORTUNITIES.
AND WHERE DOES ONE TACKLE THIS
ACADEMIC OR RESEARCH PIPELINE
AND PREVENT IT FROM LEAKING?
WE TALKED EARLY ABOUT MULTIPLE
POINTS BUT MY BIAS WOULD BE THAT
WE NEED TO START EARLY AND WHERE
DOES ONE SEE THE OPTIMAL RETURN
ON INVESTMENT?
I JUST WANT TO MENTION, I HAVE
BEEN FORTUNATE TO SERVE IN A
NUMBER OF LEADERSHIP ROLES AT
DIFFERENT PLACES AND DIFFERENT
PARTS OF THE COUNTRY.
HAVE LEARNED A LOT FROM ALL OF
THEM.
AND I'M EXCITED TO USE SOME OF
THE TOOLS AND THINGS I'VE
LEARNED IN THESE POSITIONS HERE
IN THE INTRAMURAL PROGRAM AT
NICHD.
AND IT WAS MENTIONED THERE IS A
PICTURE OF DR. BIANCHI AND ME
PROVING THAT I WAS ON THE
COUNCIL 2016-2020.
THAT WAS MY FIRST COUNCIL
MEETING AND IT WAS JUST SUCH AN
INCREDIBLE EXPERIENCE TO BE
AROUND THE TABLE WITH YOU ALL
AND WORKING ON THE MISSION AND
VISION STATEMENTS, GETTING TO
REVIEW THE STRATEGIC PLAN.
THRILLED TO HAVE THE OPPORTUNITY
TO REVISE IT AGAIN.
I THINK WE LEARNED A LOT THE
FIRST TIME.
I HAVE ENJOYED BEING A
SCIENTIFIC MENTOR AND ENJOYED
SERVING ON DATA AND SAFETY
MONITORING BOARDS AND HAD QUITE
A BIT OF EXPERIENCE WITH THE FDA
FROM THE MY OWN STUDIES AND FROM
MENTORING.
SO MY VISION FOR MY VISION
STATEMENT AS THE NEW CLINICAL
DIRECTOR IS YOU:
[ READING ]
IS:
[ READING ]
AND MY VISION IS GROUNDED IN THE
MISSION STATEMENTS AND THE
VISION STATEMENTS THAT WE TALKED
ABOUT A LOT IN THIS MEETING.
AND MY BROAD GOALS AS A LEADER
AND AGAIN DR. BIANCHI AND I BOTH
GRAVITATED TOWARDS A PUZZLE
IMAGE.
BUT IT'S MULTI-FOLD.
INVESTING AND SUPPORTING PEOPLE,
MANAGING CHANGE AND BRINGING
STABILITY, PROVIDING
REASSURANCE.
IT'S ALWAYS HARD WHEN THERE IS A
NEW LEADER, WHAT IS THE NEW
LEADER?
THE NEW SCHAFER IN TOWN GOING TO
DOEN?
COURAGING OPEN DIALOGUE AND
TRANSPARENCY, FOSTERING JUSTICE,
EQUITY, DIVERSITY AND INCLUSION.
PROMOTING RESEARCH EXCELLENCE.
ATTRACTING TALENT, PROMOTING
WELL-BEING, PROFESSIONALISM,
STRENGTHENING PARTNERSHIPS AND
FOSTERING FACULTY TRAINEE AND
STAFF DEVELOPMENT.
A LOT OF THIS DR. McBAIN
TALKED ABOUT.
A THEME THAT HAS ALWAYS
RESONATED WITH ME FROM THE
STRATEGIC PLAN IS ADVANCING SAFE
AND EFFECTIVE THERAPEUTICS AND
DEVICES FOR PREGNANT AND
LACTATING WOMEN, CHILDREN AND
PEOPLE WITH DISABILITIES.
AND DR. BIANCHI HAS DONE SOME
GREAT WORK WITH THE PEDIATRIC
RESEARCH STRATEGIC PLAN, THE
TASK FORCE.
A LOT OF WORK IS UNDERWAY.
BUT SINCE I WAS ON COUNCIL,
THERE HAS BEEN A LOT OF WORK
ABOUT MAKING IT EASIER FOR YOUNG
CHILDREN TO BE SEEN IN THE
CLINICAL CENTER, FOR PREGNANT
WOMEN TO BE ON PROTOCOLS, MAKING
SURE THAT IT IS SAFE AND
ENSURING EXCELLENT IN-PATIENT
SERVICES.
I'LL BE THINKING A LOT ABOUT
PREGNANT AND PEDIATRIC
ENDOCRINOLOGY.
ALL THESE OPPORTUNITIES TO HAVE
THE IMPETUS TO PARTNER WITH
LOCAL HOSPITALS, WITH THE
NEONATAL AND CRITICAL CARE
COVERAGE.
AND THEN CONTRIBUTING TO THE
PRECISION MEDICINE AND THE
PRECISION NUTRITION EFFORTS THAT
ARE SPOKEN ABOUT IN THE
STRATEGIC PLAN.
EQUITY, DIVERSITY AND INCLUSION.
I TALKED ABOUT TODAY ALREADY IN
THIS MEETING.
IT'S OUTLINED IN DETAIL IN THE
STRATEGIC PLAN.
I HAVE BEEN VERY, VERY
INTERESTED IN THE PROGRAMS FOR
YOUNG SCIENTISTS.
I DIRECTED THE NICHD FUNDED
STUDENT SUMMER RESEARCH PROGRAM
WITH THE AMERICAN PEDIATRIC
SOCIETY.
THERE ARE A LOT OF
OPPORTUNITIES.
AND PART OF MY VISION IS HAVING
A EDI CHAMPION FROM THE DIR WHO
IS HELPING ME AS A CLINICAL
DIRECTOR, HELPING THE LEADERSHIP
TEAM TO CONSTANTLY BE THINKING
ABOUT THE OPPORTUNITIES WE HAVE,
THE INTENTIONAL OUTREACH TO
APPLICANTS, NOT ONLY FOR THE
TRAINEES BUT FOR JUNIOR AND
SENIOR SCIENTISTS AND A NUMBER
OF ROLES THAT ARE OPEN RIGHT
NOW.
WE ARE RECRUITING.
AND AS THE CHAIR AT BAYLOR WAS
VERY INVOLVED IN THIS WORK, AND
WE BROUGHT JEDI INTO IT.
WE ADDED JUSTICE.
SO I WILL COME TO MY CLINICAL
DIRECTOR ROLE WITH MY YODA EARS
ON.
JUST BRIEFLY, AGAIN, FACULTY
DEVELOPMENT AND WELLNESS IS A
PRIORITY.
TEAMS ARE TIRED.
AFTER THE PANDEMIC AND WE'RE
FIGURING OUT HOW TO BE TOGETHER
AGAIN IN THE RIGHT COMBINATION
OF HYBRID WORK, BEING REMOTE AND
BEING TOGETHER.
THINKING ABOUT PRODUCTIVITY,
SATISFACTION AND ADVANCEMENT.
IF WE GET THOSE RIGHT WE CAN
RETAIN OUR KEY SCIENTISTS OR
HAVE THOSE TRAINEES WANT TO STAY
ON.
AND ALSO HAVE THE PRIVILEGE OF
CO-CHAIRING FOR THE AMERICAN
PEDIATRIC SOCIETY, THE CAREER
SUPPORT COMMITTEE.
AND WE HAVE THOUGHT A LOT ABOUT
AS A COMMITTEE, BUT WITHIN OUR
INSTITUTIONS THE DIFFERENCE IN
MENTORING AND COACHING AND
SPONSORSHIP AND TRYING TO
PROMOTE ALL OF THAT WITHIN THE
DIR.
CAREER DEVELOPMENT AND WELLNESS.
EVALUATING A LOT OF THE
PROGRAMS.
AGAIN DR. McBAIN ALREADY
OUTLINED SOME TREMENDOUS
ACTIVITY THAT ARE ALREADY
ONGOING.
OPPORTUNITIES FOR THOSE AFFINITY
GROUPS THAT HE TALKED ABOUT TO
GET-TOGETHER AND SOCIALIZE.
IT'S REALLY IMPORTANT.
WE WANT OUR TRAINEES AND OUR
SCIENTISTS TO BE EXCITED ABOUT
COMING TO WORK TO WANT TO COME
BACK IN.
AND TIMES TO NETWORK AND
SOCIALIZE.
MAKE ALL OF US MORE CREATIVE
WHEN WE RELAX AND ENJOY WHAT WE
ARE DOING WHEN WE'RE CREATIVE
AND IT'S GOING TO LEAD TO BETTER
PRODUCTIVITY FOR THE SCIENTIFIC
PROGRAM AND THE DIR.
AND THE STRATEGIC PLAN TALKS
ABOUT ENHANCING THE DEVELOPMENT
OF ITS WORKFORCE AND I THINK WE
OFTEN THINK A LOT ABOUT EARLY
CAREER INVESTIGATORS.
I JUST WANT TO MAKE SURE THERE
WAS A QUESTION ASKED ABOUT IT.
THE SENIOR SITE, ESTABLISHED
INVESTIGATORS.
THEY ARE FIGURING OUT EN TIRED
AFTER THE PANDEMIC AND MANY OF
US WERE LEADING THE CLINICAL
TEAMS DURING COVID-19.
AND WAYS TO BE CONSTANTLY
EVALUATING WHAT WE'RE DOING,
CAREER ENHANCEMENT AND
SATISFACTION AND LEADERSHIP
DEVELOPMENT OPPORTUNITIES TO BE
A COACH, RETREATS, MAYBE
RELEVANT TO RESEARCH,
OPPORTUNITIES FOR NETWORK,
TRAINING AND PROFESSIONAL ITCH,
COMMUNICATION, HOW TO RUN A
TEAM, HOW TO RUN A RESEARCH
GROUP.
AND THE OPPORTUNITY FOR ADVISORY
COMMITTEES CRITICAL CAREER
DEVELOPMENT COMMITTEES FOR THE
YOUNG SCIENTISTS BUT ALSO
IMPORTANT FOR SENIOR SCIENTISTS
TO KEEP THEMSELVES -- EN VIG
RATED.
I ALSO BELIEVE THAT NONE OF US
ARE TOO OLD TO HAVE A MENTOR.
AND I'M VERY INTERESTED IN THE
CONCEPT OF REVERSE MENTORING,
WHERE MY MENTEES GIVE FEEDBACK
AND MAKE SURE THAT THE WAY I'M
MENTORING THEM IS RELEVANT.
I HAVE BEEN REMINDED OVER AND
OVER HOW IMPORTANT LISTENING TO
WHAT THE YOUNG SCIENTISTS ARE
TELLING ME IS PROBABLY SOMETIMES
MORE IMPORTANT THAN THE ADVICE
I'M GIVING THEM.
ANOTHER THEME, IMPROVING CHILD
AND ADOLESCENT HEALTH AND THE
TRANSITION TO ADULTHOOD.
THIS WAS A PRIORITY.
THE 2020 STRATEGIC PLAN,
ALIGNING EFFORTS WITHIN THE
INSTITUTE OR ACROSS INSTITUTES.
NICHD HAS THE OPPORTUNITY TO BE
A LEADER IN THIS AREA AND TO
FURTHER DEVELOP AND REFINE
ALGORITHMS TO -- WE CAN DECIDE
WHICH METRICS WE SHOULD BE
FOLLOWING SO BEFORE THEY CROSS
THE BRIDGE THEY HAVE THAT
READINESS FOR TRANSITION TO GO
INTO ADULT CARE.
AND IMPORTANTLY, THINKING ABOUT
THE CHILD, THE ADOLESCENT WITH
MEDICAL COMPLEXITY DOING BONE
HEALTH CLINICAL WORK.
A NUMBER OF MY PATIENTS ARE NON
AMBULATORY REMEMBERING THAT THE
INSTITUTE WAS FOUNDED IN THE
60s TO REALLY ADDRESS THE
NEEDS OF PEOPLE WITH
DISABILITIES.
SO AGAIN, THINKING ABOUT
TRANSITION BUT IMPORTANTLY
THINKING ABOUT IT IN PATIENTS
WITH DISABILITIES BECAUSE THEY
HAVE GREATER NEEDS AND IT'S A
DIFFERENT SET OF ISSUES THAT WE
NEED TO BE THINKING ABOUT.
AND IMPORTANTLY, THINKING ABOUT
PHYSICAL NEEDS BUT ALSO MENTAL
HEALTH NEEDS.
THERE IS THE CLINICAL CENTER.
THIS PART LOOKS THE VERY SAME AS
WHEN I WAS A SUMMER INTERN.
BUT THERE IS A HUGE PART BEHIND
IT NOW.
AGAIN JUST RECAPPING AND
ENSURING THE EXCELLENCE THAT
SPECIALTY SERVICES, AND THINKING
OF NEW MODELS TO OPTIMIZE SAMPLE
AND DATA COLLECTION.
ECHOING SOME OF WHAT
DR. McBAIN SAID.
MAKING SURE WE HAVE OUTSTANDING
ASSESSMENT TOOLS, EXCITING THE
SCANNER WILLING OVER THERE AND
ENHANCING THE OPPORTUNITIES FOR
MULTI-SITE COLLABORATIONS
WHETHER MULTI-SITE INTRAMURAL OR
EXTRAMURAL OR ACROSS THE
INSTITUTES.
ONE CONCEPT I WANTED TO PICK UP
ON, DR. McBAIN ALSO TALKED
ABOUT COMMUNITY ENGAGEMENT.
AND THINKING ABOUT WAYS TO
EXPAND WHAT WE'RE DOING NOT THE
TRADITIONAL MODEL OF HAVING A
CLINICAL RESEARCH CENTER WHERE
PATIENTS COME TO NIH, BUT GOING
OUT INTO THE COMMUNITY.
IT'S PROBABLY A LESS BIAS WAY TO
GET WHAT IS REALLY UNDERSTAND
WHAT IS GOING ON TO GET THE REAL
AUTHENTIC DATA.
NICHD HAS A NUMBER OF
COMMUNITY-BASED RESEARCH
CONTRACTS WITH LOCAL PROGRAMS
AND SCHOOLS.
MANY OF THESE ARE PIPELINE
INITIATIVES.
BUT OPTIMIZING THOSE ALSO
OPTIMIZING ACCESS TO GET INTO
CLINICAL TRIALS, MAKING SURE
THAT ALL PATIENTS HAVE THE
OPPORTUNITIES TO PARTICIPATE
PERHAPS TO GET A NEW
INTERVENTION BEING STUDIED THAT
IS PROMISING.
THAT IS THE OTHER BIAS WE SEE IN
CLINICAL RESEARCH.
AND NOT FORGETTING THE GLOBAL
COMMUNITY.
WHEN WE THINK ABOUT COMMUNITY,
THE GLOBAL HEALTH COMMUNITY, AS
WELL.
SO I'M ABOUT TO WRAP UP.
EXCITED TO HIT THE GROUND
RUNNING THINKING ABOUT CLINICAL
AND TRANSLATIONAL RESEARCH
THROUGH COLLABORATIVES, ONGOING
AND NEW PARTNERSHIPS, PROMOTING
TEAM SCIENCE, VERY SELECTIVELY
THINKING ABOUT AI AND MACHINE
LEARNING AND WHERE IS THAT
APPROPRIATE TO EMPLOY?
TECHNOLOGY TRANSFER.
I HAVE A NUMBER OF IDEAS FOR NEW
VENTURES AND PROGRAMS AND I'M
EXCITED TO THINK WITH THE TEAM
ABOUT THEM.
AND ALSO AS A CLINICAL DIRECTOR,
THINKING ABOUT FACILITIES.
SPACE IS ALWAYS AN ISSUE
WHEREVER ONE GOES.
AS CLINICAL DIRECTOR, THINKING
ABOUT DRY LABS AND WET LABS FOR
COLLABORATIVE BENCH TO BEDSIDE
COLLABORATIONS, WHICH CORE
FACILITIES DO WE HAVE?
DO WE NEED?
WHICH SUPPORT SERVICES?
HOW TO OPTIMIZE THE
INFRASTRUCTURE TO MAKE IT EASY
FOR PATIENTS AND THEIR FAMILIES
TO COME IN.
THINKING ABOUT BUILDING 10 AND
THINKING BEYOND BUILDING 10 ON
THE CAMPUS AND THEN IMPORTANTLY,
THINKING ABOUT THE COMMUNITY.
I FEEL FORTUNATE TO SAY I HAVE A
NUMBER OF FRIENDS AND COLLEAGUES
AT JOHNS HOPKINS AND CHILDREN'S
INITIAL, UNIVERSITY OF MARYLAND,
WHICH THERE ARE OPPORTUNITIES
THERE AND AGAIN TRYING TO
INTEGRATE RESEARCH INTO LOCAL
PRACTICES.
THERE IS SOME INTERESTING
ARTICLES SITE HERE FOR YOUR
ATTENTION FROM THE NEW ENGLAND
JOURNAL THAT TALKS ABOUT WHAT IS
DISCUSSING GOING INTO THE
COMMUNITY, PARTICULARLY
COLLECTING DATA AND OUTCOMES.
SO, IN SUMMARY, DAY NUMBER 2, I
AM LAUNCHING A LISTENING TOUR
WHICH I'M GOING TO GO ON OVER
THE NEXT FEW WEEKS.
I LEARNED AS A NEW LEADER, IT'S
BETTER TO LISTEN MORE THAN WE
TALK IN THE FIRST FEW WEEKS.
AND THAT'S THE WAY WE HEAR WHAT
IS GOING ON.
WE THINK ABOUT -- I CAN THINK
ABOUT AS A LEADER WHAT IS GOING
WELL, WHERE THE CHALLENGES ARE
AND ESTABLISH PRIORITIES.
LOOK FORWARD TO WORKING TOGETHER
TO TACKLE MAJOR CHALLENGES IN
CHILD AND ADOLESCENT HEALTH, THE
BEHAVIORAL HEALTH CRISIS AND THE
MENTAL HEALTH PANDEMIC THAT
STEMMED FROM THE COVID-19
PANDEMIC.
CHILDHOOD OBESITY, ADOLESCENT
EATING DISORDERS SKYROCKETED.
EATING DISORDERS, PREVALENCE
QUADRUPLED SINCE BEFORE THE
PANDEMIC.
THERE HAS BEEN TALK ABOUT OPIOID
USE AMONG ADOLESCENTS AND
ADDICTIVE BEHAVIORS EFFECTIVE
CLIMATE CHANGE AND
ENVIRONMENTAL.
THERE IS WORK BEING DONE ACROSS
NIH AND EAGER TO GET ONBOARD.
I HAVE DONE SOME WORK WITH
ENDOCRINE DISRUPTURS AND WOULD
LIKE TO THINK ABOUT THAT IN THE
CONTEXT OF CLIMATE CHANGE.
I'M EXCITED TO HELP DEVELOP,
RETAIN AND NURTURE THE MANY
TALENTED TEAMS WITH NICHD AND
ENSURING SCIENTIFIC OFFERINGS
AND THOSE THAT PROMOTE
PROFESSIONALISM AND WELLNESS.
AND EXCITED TO HIRE AND RETAIN
TALENT, TO REALIZE THIS
IMPORTANT GOAL, THE 2020
STRATEGIC PLAN.
SO THANK YOU AGAIN FOR THE WARM
WELCOME.
REALLY LOOKING FORWARD TO
STRIVING TOGETHER TO DEVELOP A
TOPNOTCH AND DIVERSE TEAM FROM
THE STRATEGIC PLAN TO IDENTIFY
AREAS IN WHICH NICHD AND PARTNER
AND LEAD AND CLA BE RATE.
EXCITED TO WORK WITH ALL OF YOU
BUT IN MY OWN CLINICAL RESEARCH
STUDIES EXCITED TO MEET CHILDREN
AND ADOLESCENTS AND FAMILIES WHO
ARE PART OF OUR PROTOCOLS.
THANK YOU.
[ APPLAUSE ]
>>THANK YOU VERY MUCH FOR THIS
GREAT PRESENTATION.
I THINK WE CAN TAKE ONE OR TWO
QUESTIONS.
>>CATHERINE, NICE PRESENTATION.
DAVID FROM UNIVERSITY OF
CAMBRIDGE.
AND I REALLY APPRECIATE YOUR
THOUGHTFUL APPROACH IN TERMS OF
ROADMAPPING AND TAKING THE PULSE
TO IDENTIFY WHERE THE
OPPORTUNITIES MIGHT BE.
AND I GUESS WE ALSO HIGHLIGHTED
WHERE YOU NEEDED TO BUILD SOME
CAPACITY IN THE LAB.
AND I THINK CHRIS IN HIS TALK
ALSO SUGGESTED THAT THERE BE
SOME REORGANIZATION OF THE AREAS
OF INTEREST WITHIN THE
INTRAMURAL PROGRAM.
AND I THINK IT WOULD BE VERY
INTERESTING TO SEE HOW THE
PRIORITIES IN THE CLINICAL
PROGRAM AND THE INTRAMURAL MIGHT
COINCIDE AND OVERLAP TO BUILD ON
THAT SYNERGY.
I WISH YOU THE BEST OF LUCK IN
THIS REALLY EXCITING ENDEAVOR.
>>THANK YOU, APPRECIATE THE
GREAT SUGGESTION.
>>TWO QUICK QUESTIONS.
ONE WAS ON ONE OF THOSE LAST
SLIDES WHERE YOU HAD CHALLENGES.
I DIDN'T SEE FIREARM RELATED
INJURY OR VIOLENCE.
>>I RAN OUT OF THE ROOM.
UNFORTUNATELY THERE ARE PROBABLY
A LOT OF BULLETS.
THAT'S SUCH A PROBLEM.
AND ONE THAT WE THINK ABOUT A
LOT IN ADOLESCENT MEDICINE.
SO APPRECIATE YOUR BRINGING
ATTENTION TO THAT.
>>THE OTHER QUESTION I HAVE IS
SORT OF YOUR VIEWS ON
INCORPORATING SOCIAL AND
ECONOMIC OUTCOMES INTO YOUR
FRAMEWORK.
AS AN EXAMPLE OF PORT PARTUM
DEPRESSION AMONG UNDERAGED MOMS
AND LOOKING AT THE SOCIAL AND
ECONOMIC CONSEQUENCES OF THAT,
TREATING THAT, FOR THEM AND THE
CHILDREN.
>>WONDERFUL POINT.
I WAS PRESENTING A LOT OF VERY
QUICKLY.
WE JUST FINISHED A PILOT STUDY
IN HOUSTON IN AN URBAN SETTING
AND HAVE TRIED TO LOOK AT THAT,
HOW ZIP CODE AND EVEN THE
PREVALENCE OF PREGNANCY, WHAT
SUPPORTS THE YOUNG MOTHER HAS
AND TIEING IT TO MENTAL HEALTH
OUTCOMES.
AND I THINK IT'S IMPORTANT IN
DESCRIPTIVE STUDIES TO
UNDERSTAND THAT BUT ALSO
PROBABLY MORE IMPORTANTLY THE
INTERVENTIONS BECAUSE WE ARE
GOING TO HAVE A DIFFERENT
INTERVENTION FOR WHEN THE
DIFFERENT ANSWERS AROUND SOCIAL
DETERMINANTS.
THANK YOU.
>>MAY I INVITE THE VOICE OF THE
PARTICIPANT UP?
>>YES, WE ARE GOING TO START
THAT AND MAYBE SOMEONE CAN HELP
CATHERINE WITH THE CHAIRS.
FOR THOSE WHO ARE FAMILIAR WITH
OUR ADVISORY COUNCIL MEETINGS,
YOU KNOW THAT WE REGULARLY
FEATURE A SEGMENT CALLED, THE
VOICE OF THE PARTICIPANT.
THIS GIVES US A CHANCE TO HEAR
FROM THOSE WHO HAD PERSONAL
EXPERIENCES RELATED TO RESEARCH
THAT NICHD FUNDS.
TODAY, WE ARE DELIGHTED TO
WELCOME CAROLINEA RODRIGUEZ AND
HER MOTHER TO THE NIH FOR OUR
NICHD ADVISORY COUNCIL MEETING.
CAROLINEA WAS A PARTICIPANT IN A
RESEARCH STUDY OF DR. GORDON'S
IN HOUSTON, TEXAS, THROUGH THE
USDAARS CHILDREN'S NUTRITION
RESEARCH CENTER.
DR. GORDON IS GOING TO PROVIDE
ADDITIONAL INFORMATION ABOUT
THIS STUDY IN HER COMMENTS.
SO, WELCOME CAROLINEA AND HER
MOTHER.
[ APPLAUSE ]
>>CARINA AND HER MOTHER CAME A
LONG WAY TO BE HERE WITH US
TODAY.
IT'S HER FIRST IF I'M IN
WASHINGTON, D.C.
SO IT'S A VERY EXCITING TRIP FOR
HER.
I'M GOING TO GIVE A LITTLE
BACKGROUND INFORMATION AND WE'LL
START OUR INTERVIEW.
SO, I'M DELIGHTED TO WELCOME
CAROLINEA RODRIGUEZ AND HER
MOTHER WHO TRAVELED FROM
HOUSTON.
WE ARE DELIGHTED TO HAVE YOU
SPEAK TO MY COLLEAGUES AND OUR
GREAT ADVISORY COUNCIL AND
GUESTS IN PURPOSE IN THE BACK
AND ALSO STREAMING INTO THIS
MEETING.
AND AS I INTRODUCEAL OF YOU,
CARINA PARTICIPATED IN A
CLINICAL RESEARCH STUDY OF MINE
IN HOUSTON, ASPECTS OF PHYSICAL
HEALTH AND WILL QUALITY OF LIFE
IN CHILDHOOD CANCER SURVIVORS.
AND TO BE ELIGIBLE FOR MY TEEN
STUDY, PARTICIPANTS HAD TO BE
GIRLS WHO HAD BEEN DIAGNOSED
WITH EARLY SIGNS OF PREMATURE
HEARING AND SUFFICIENCY WHO WERE
NOT YET ON A THERAPY AND WHO
WERE BETWEEN THE AGES OF 10 AND
24.
CARLENEA JUST MADE IT.
SHE WAS 10 WHEN SHE WAS IN MY
STUDY.
AS I SPOKE ABOUT MY
PRESENTATION, I HAVE A LONG TERM
INTEREST IN POI AND ESPECIALLY
THE IMPACT ON BONE HEALTH.
AND I HAVE CARED FOR LONG TERM
CANCER SURVIVORS LIKE CAROLINEA
WHO RECEIVED CHEMOTHERAPY AND
RADIATION AND I HAVE PRACTICED
FOR OVER 25 YEARS.
CAROLINEA AND I JUST WANT TO SAY
THAT I FIND PATIENTS LIKE YOU TO
BE INSPIRING.
YOU REALLY DRIVE ME TO DO MY
RESEARCH AND TO WANT TO GET MORE
ANSWERS.
SO AGAIN, I APPRECIATE YOU BEING
HERE.
SO WE ARE GOING TO DIVE INTO OUR
INTERVIEW.
SO MAYBE STAND UP HERE BESIDES
ME AND TELL MY COLLEAGUES HOW
OLD ARE YOU?
>>I'M 11 YEARS OLD.
>>AGAIN SHE WAS 10 IN MY
RESEARCH STUDY.
WHAT GRADE ARE YOU?
>>5th GRADE.
>>WHAT'S YOUR FAVORITE SUBJECT
IN SCHOOL.
>>EITHER MATH OR SCIENCE.
>>WE REALLY WANT YOU TO COME TO
NIH SOME DAY AND BE A SUMMER
STUDENT OR A SUMMER INTERN JUST
LIKE I WAS.
I LOOKED A LITTLE BIT YOUNGER IN
THAT PICTURE, DIDN'T I?
AND WHAT WOULD YOU LIKE TO DO
WHEN YOU GROW UP?
>>I WOULD ACTUALLY LIKE TO BE
LIKE AN ENGINEER.
>>THE SHE WANTS TO BE AN
ENGINEER.
LET ME HAVE YOU SPEAK UP A
LITTLE BIT CLOSER HERE.
>>WE HAVE A HAND MIC.
CAN YOU REPEAT?
>>SO I ASKED CAROLINEA WHAT SHE
COULD LIKE TO DO -- AND SHE SAID
THAT SHE WOULD LIKE -- BE AN
ENGINEER.
>>PERFECT.
AGAIN WE LOVE SEEING GIRLS WHO
WANT TO GO INTO SCIENCE AND
ENGINEERING.
SO KEEP UP THE GOOD WORK.
FOR CAROLINEA'S MOM, MAYBE I'LL
GIVE YOU THE MICROPHONE.
CAN YOU YOU BRIEFLY TELL US A
LITTLE BIT ABOUT CAROLINEA'S
CANCER DIAGNOSIS AND HOW LONG
SHE WAS ON CHEMOTHERAPY AND
RADIATION?
>>YES, FIRST OF ALL, THANK YOU
FOR HAVING ME.
I FEEL HONORED TO BE HERE WITH
ALL OF YOU GUYS.
SHE WAS DIAGNOSED IN APRIL OF
2018 WITH A TUMOR.
AND SHE STARTED CHEMO AND
RADIATION SHORTLY AFTER THAT.
>>AND SHE WAS ON THE CHEMO
RADIATION OVER THE COURSE OF A
YEAR, RIGHT?
>>THAT'S CORRECT.
SHE STARTED, OF COURSE THEY TOOK
HER RIGHT KIDNEY OUT.
AFTER THEY TOOK THE RIGHT KIDNEY
OUT, THEY DID TELL ME THAT THE
CANCER HAD SPREAD.
SO SHE WAS DIAGNOSED WITH STAGE
4 CANCER.
SHE STARTED CHEMOTHERAPY IN
APRIL AFTER THEY TOOK OUT THE
RIGHT KIDNEY.
AND THEN STARTED RADIATION IN
JUNE.
PRAISE THE LORD, BY JULY AFTER
DOING A SCAN, SHE WAS CANCER
FREE.
BUT DID CONTINUE CHEMO AND
RADIATION -- OR PARDON ME, CHEMO
UNTIL DECEMBER.
>>CAROLINA'S STORY IS THE
REASON A NUMBER OF US GO INTO
PEDIATRICS.
THIS IS SO INSPIRING.
WHEN DID YOU LEARN THERE MIGHT
BE AN ENDOCRINOLOGIST OR HORMONE
SPECIALIST?
>>WELL THE DEAR DID TELL ME
WHEN THEY DID THE RADIATION THAT
SHE MIGHT HAVE ISSUES -- THE
DOCTOR -- THEY TOLD ME EARLY ON
TO CONSULT WITH SOMEONE.
>>AND THE BACKGROUND STORY --
I'M A CLOSE COLLEAGUE OF
CAROLINEA'S ONCOLOGIST AND WAS
STARTING TO SHOW SIGNS OF DELAY
AND CONCERNS ABOUT LATE PUBERTY
OR DELAYED PUBERTY WHICH LED YOU
TO ME AND THEN THE RESEARCH
PROTOCOL.
SO TO TALK A LITTLE BIT ABOUT
THE RESEARCH AND EITHER OF YOU
CAN ANSWER THIS, WHAT MOTIVATED
YOU TO WANT TO PARTICIPATE IN
OUR RESEARCH STUDY?
>>YOU KNOW, AFTER SHE WAS
CANCER FREE, AS PARENTS, WE ASK
WHY?
WHY ME?
SO AND WHEN YOU REACHED OUT TO
ME ABOUT IT, I WAS ONBOARD.
I FELT LIKE THERE WAS A PURPOSE.
THERE WAS A REASON WHY WE WENT
THROUGH WHAT WE WENT THROUGH.
SO ANYTHING RESEARCH TO BETTER
THEM, I WAS ONBOARD.
>>THANK YOU.
I WAS ALWAYS SO STRUCK BY YOUR
ANSWER AND WE HAD DISCUSSIONS
ABOUT THE WAY WE MOVE THE FIELD
FORWARD, IS TO HAVE FAMILIES WHO
ARE ONBOARD AND PARTNERING WITH
US.
CAROLINEA, WHAT DO YOU REMEMBER
ABOUT THAT DAY?
CAROLINEA CAME TO THE USGAARS
RESEARCH CENTER.
WE HAVE AN OUTPATIENT PROGRAM
THAT IS QUITE SIMILAR TO WHAT IS
IN THE CLINICAL CENTER.
>>SO WHAT I REMEMBER ABOUT IT
IS THAT THERE WAS LIKE SCANS I
HAD TO DO AND LIKE QUESTIONS
THAT YOU GAVE ME.
>>SO CAROLINEA WAS A REAL
TROOPER.
SHE UNDERWENT DEXASCANS, PCTC
SCANS, SO ARM AND LEG BONE
DENSITY.
REMEMBER YOU PUT YOUR LEG IN
THAT BIG SCANNER AND THEN YOUR
ARM AND THEN WE DID A NUMBER OF
QUALITY OF LIFE AND MOOD
QUESTIONNAIRES.
BECAUSE CONCERNED WITH MAYBE
FALLY ESTROGEN LEVELS IT WAS
MAKING YOU TIRED OR JUST NOT
FEEL AS GOOD.
SO WE WERE TRYING TO DOCUMENT
WHAT WAS GOING ON.
ARE THERE THINGS YOU COULD --
I'LL ASK YOU FIRST, WHAT WAS
YOUR FAVORITE PART OF THE VISIT.
>>MY FAVORITE PART WAS SOME
QUESTIONS YOU GIVE ME ARE LIKE
ONES I REALLY NEEDED TO TALK
ABOUT.
>>SO SOME OF THE QUESTIONS
CAROLINEA SAID, WERE THINGS SHE
REALLY WANTED TO TALK ABOUT.
AND THAT'S WHY I INVITED YOU.
CAROLINEA AND I HAD SOME GOOD
DISCUSSIONS THAT DAY AND I THINK
THE QUESTIONNAIRES JOG SOME GOOD
DISCUSSION ABOUT WHAT YOU HAVE
BEEN THROUGH AND WHAT WAS AHEAD
AND HOW I COULD SUPPORT YOU IN
THE MEDICAL TEAM COULD SUPPORT
YOU.
WE ALSO GIVE OUR PATIENTS A
REALLY NICE SNACK MIDDAY.
YOU REMEMBER THAT?
BUT SHE DIDN'T SAVE THE SNACK.
ARE THERE THINGS YOU COULD SHARE
WITH ME AND OTHER CLINICAL
RESEARCHERS HERE ABOUT HOW WE
COULD MAKE THE VISIT BETTER, THE
WHOLE RESEARCH EXPERIENCE
BETTER?
>>NO.
IT'S ALREADY BETTER.
>>I REMEMBER WE HAD ONE
CONVERSATION ABOUT HOLDING YOUR
LEG IN THE SCANNER A LONG TIME.
IT'S HARD TO KEEP STILL, ISN'T
IT?
>>SHE HAS BEEN THROUGH A LOT.
SHE'S BEEN THROUGH A LOT.
SO STANDING STILL --
>>YOU GET TIRED OF THAT AND
CAROLINEA'S IS ASKING QUESTIONS
ABOUT WHAT WE CAN DO BETTER,
MOTIVATES ME TO FIND A WAY TO
EVALUATE REALLY QUICK.
PUT YOUR ARM THERE AND SNAPSHOT
THE PICTURE AND THE IT'S DONE.
THE WAY IT IS NOW IT'S A CAT
SCAN.
SO YOU HAVE TO KEEP THE ARM OR
THE LEG THERE FOR, FOUR OR FIVE
MINUTES UNTIL WE GET A GOOD
IMAGE.
AND THAT'S A LONG TIME.
I JUST WANT TO OPEN IT UP TO SEE
WHAT QUESTIONS THE COUNCIL MIGHT
HAVE.
>>HI, CAROLINEA, I'M TRISHA.
THANK YOU FOR BEING HERE.
CAN YOU TELL ME, HAVE YOU HAD A
CHANCE TO TALK TO OTHER
CHILDREN, KIDS YOUR AGE, WHO ARE
EXPERIENCING MEDICAL SITUATIONS
LIKE YOURSELF, CANCER OR OTHER
THINGS?
DO YOU HAVE A CHANCE TO MEET AND
TALK TO OTHER KIDS?
>>LIKE I THINK IT WAS YES,
BECAUSE WHEN I WAS IN THE
HOSPITAL THERE ARE OTHER KIDS
THAT KIND OF HAVE THE SAME THING
AS ME.
LIKE THERE IS LIKE A ROOM WHERE
I CAN TALK WITH THEM.
>>THANK YOU.
I LIKE THE IDEA I THINK SUPPORT
GROUPS CAN BE REALLY HELPFUL FOR
PATIENTS AND FOR PARENTS.
AND FIGURING OUT HOW TO BEST
SUPPORT AS A PARENT, HOW TO
SUPPORT OTHER PATIENTS.
SO WE PROBABLY NEED MORE OF
THOSE.
>>THANK YOU, BOTH FOR BEING
HERE.
AND CAROLINEA, YOU DO INSPIRE US
AND SO DOES YOUR MOM.
FOR TAKING SOMETHING THAT WAS SO
HARD AND TRYING TO MAKE THINGS
BETTER FOR OTHER PEOPLE.
COULD YOU JUST TELL US FROM YOUR
PERSPECTIVE WHAT RESEARCH MEANS
TO YOU?
>>RESEARCH MEANS LIKE JUST
LEARNING MORE ABOUT OF AN OBJECT
OR A THING.
>>CAN YOU REPEAT HER ANSWER?
>>AS A TRUE SCIENTIST, RESEARCH
IS LEARNING MORE ABOUT AN OBJECT
OR A THING AND,WORKS, RIGHT?
AND MOM WOULD YOU LIKE TO --
>>IT'S IMPORTANT TO ME BECAUSE
I HOPE THAT YOU WHO FIND BETTER
WAYS OR TREATMENT AND THEN AFTER
TREATMENTS FOR THEM, WHAT WE CAN
DO AS A PARENT -- BECAUSE THEY
TELL ME THERE WAS A LOT OF
THINGS THAT DIDN'T HAPPEN LATER,
WHICH I HAVE FAITH IN THE LORD,
THAT'S WHY SHE IS HERE.
I KNOW SHE'S GOING TO BE FINE.
BUT RESEARCH, I FEEL THAT HELPS
THEM FOR THEIR FUTURE TO GET
BETTER, MEDICINE, TO HELP THEM.
SO I THINK IT'S VERY IMPORTANT.
SO THANK ALL YOU GUYS FOR THAT.
>>THANK YOU FOR BEING HERE.
AND FOR CONTRIBUTING TO THE
RESEARCH.
I GUESS I'M DR. NEIL CARRY, A
REPRODUCTIVE ENDOCRINOLOGIST AND
OBGYN.
AND I GUESS THE QUESTION I HAVE
FOR YOU IS, IF THERE WAS ONE
THING YOU WANTED US TO KNOW
ABOUT YOUR EXPERIENCE THAT MAYBE
THE EXPERIENCE OF OTHERS THAT
COULD MAKE IT BETTER, WHAT WOULD
THAT BE?
>>GOING BACK FROM THE DAY WE
FOUND SHE HAD THE CANCER -- IT
WAS THE HARDEST DAY EVER.
AND I SAID I WAS NOT GOING TO
CRY.
BUT IT WAS HARD.
BUT I HAVE A LOT OF FAITH IN GOD
AND I SAID, LORD, YOU SAID IF I
TRUSTED YOU YOU'RE -- I WAS
HONEST SINCE DAY ONE.
I TOLD HER WE ARE GOING TO GO
THROUGH SOME HARD THINGS BUT
WE'LL GET THROUGH THIS.
I BELIEVE IN SCIENCE.
I HAVE FAITH IN GOD.
AND I KNEW THAT WE WERE GOING TO
GET THROUGH IT.
AND NOT KNOWING ANYTHING
HONESTLY WHEN HE TOLD ME SHE HAD
STAGE 4 CANCER, I'M LIKE WHAT
DOES THAT MEAN?
I DIDN'T KNOW ANYBODY THAT HAD
CANCER.
I DIDN'T KNOW WHAT -- NOW I KNOW
WHAT IT MEANS.
BUT I KNEW IT WASN'T GOOD WHEN
THEY TOLD ME IT WAS STAGE 4.
SO, IT WAS HARD BUT MY FAITH IN
GOD, MY FAITH IN SCIENCE,
RESEARCH AND I WAS IN HOUSTON
AND I KNEW I WAS IN THE BEST
PLACE TO BE.
BEST DOCTORS IN THE WORLD.
SO I KNEW I WAS GOING TO BE
OKAY.
>>I'LL REMIND TO EVERYONE, THE
MD ANDERSON CANCER CENTER IS
RIGHT THERE IN HOUSTON AND WORKS
IN A COLLABORATIVE WAY WITH
TEXAS CHILDREN'S TO HAVE THIS
DIAGNOSIS IT'S A FANTASTIC PLA
PLACE.
>>OCCASIONALLPLACE.
>>CAROLINA IS PROBABLY SAYING,
I WANT TO GO SEE DC AND THE
WHITE HOUSE.
THANK YOU VERY MUCH!
[ APPLAUSE ]
>>THANK YOU VERY MUCH CAROLINA
AND Ms. RODRIGUEZ.
I GOT CHILLS WHEN YOU WERE
TALKING AND YOU INSPIRE ALL OF
US.
YOU'RE THE REASON WHY WE DO WHAT
WE DO.
NOW WE HAVE ANOTHER PART OF OUR
COUNCIL MEETINGS.
WE WILL HEAR FROM OUR RETIRING
MEMBERS AND I'M GOING TO CALL ON
YOU IN ALPHABETICAL ORDER.
THIS IS A VERY SPECIAL GROUP OF
ADVISORS WHO STARTED JUST BEFORE
THE PANDEMIC AND THEY SEAMLESSLY
TRANSITIONED TO THE VIRTUAL
FORMAT.
THEY PLAYED AN AMAZING ROLE IN
KEEPING OUR TRAINS RUNNING.
WHILE WE ARE IN THE MIDST OF A
GLOBAL PANDEMIC.
I MEAN WE REALLY NEVER HAD A
HICCUP IN OUR USUAL OPERATIONS
IN TERMS OF GETTING GRANTS OUT
THE DOOR.
SO THAT IS A TRIBUTE TO ALL OF
YOU AS WELL AS OUR GRANTS
MANAGEMENT STAFF.
AND OUR PROGRAM OFFICIALS.
SO, DO WE HAVE DR. COUGHLIN ON?
SO WE ARE GOING TO START WITH
DR. COUGHLIN VIRTUALLY.
>>HI, DIANA.
THANK YOU FOR THE OPPORTUNITY TO
SAY HELLO TODAY AND GOOD BY.
IT'S BEEN QUITE A FOUR YEARS AS
YOU ALLUDED TO.
PARTICULARLY AS AN INSIGHT FROM
A NON-NIH GOVERNMENTAL-TYPE
PERSON.
IT'S JUST A REMARKABLE ABILITY
TO SEE HOW THIS IS WORKING AND
THE WORK THAT NIH HAS BEEN
DOING.
AND I WANTED TO JUST GO BACK
OVER THREE PAPERS OR ARTICLES OR
ISSUES THAT WE DISCUSSED THAT I
ALWAYS THINK ABOUT.
SOME OF IT IS JUST THE
SIMPLICITY THAT YOU HAVE BEEN
ABLE TO DISTILL AND FUND AND GET
RESULTS.
I REMEMBER THE FIRST, THE
HARVARD NICU, THE QUALITY OF
MOTHER'S MILK FOR THE GROWTH OF
BABIES.
JUST A BEAUTIFUL SIMPLE CONCEPT.
BUT SOMEBODY HAD TO ANSWER THE
QUESTION.
AND SOMEBODY HAD TO ANSWER IT
AND YOU DID THAT.
AND I THOUGHT THE RESULTS
PRESENTED WERE JUST REMARKABLE
AND SPOKE WELL TO YOUR EFFORTS.
ALSO AS A SURGEON, NEXT YEAR OR
THE NEXT MEETING, WE
DISCUSSED -- NO ONE EVER
DISCUSSED THE COMPLICATIONS OF
APPEND SIGHTIS AND THAT GOT MY
ATTENTION.
I REALLY SAT UP AS PROBABLY
NOTICED.
AND THE FACT THAT YOUR GROUP CAN
FUND SUCH WORK, BASIC
FUNDAMENTAL BUT IMPORTANT WORK,
WORK THAT AFFECTS ME DAILY,
PRACTICALLY, I THINK IS QUITE
IMPORTANT.
AND FINALLY, I THINK KUDOS TO
YOU AND TO YOURS FOR BRINGING TO
LIGHT -- IF YOU REMEMBER DURING
THAT TERRIBLE COVID -- THOSE
TERRIBLE COVID YEARS, REALLY
THAT YOU BROUGHT TO LIGHT THE
WORK THAT NORTH CAROLINA AND HOW
SAFE IT WAS FOR THESE DESPERATE
CHILDREN TO RETURN TO THE
SCHOOLROOM.
AND IF YOU WEREN'T THE FIRST TO
BRING THAT TO THE WORLD'S
ATTENTION, YOU WERE AMONG THE
FIRST.
AND AGAIN, KUDOS TO YOU.
SO THANKS FOR THE OPPORTUNITY TO
SERVE AND I CERTAINLY WILL
CHERISH THIS EXPERIENCE.
>>THANK YOU VERY MUCH.
WE TRULY APPRECIATE YOUR SERVICE
DR. COUGHLIN.
AND NOW DR. KATHLEEN EGAN AND
FOR THOSE WHO DON'T KNOW,
DR. EGAN WAS ALSO A VOICE OF THE
PARTICIPANT.
SHE IS THE MOTHER OF HER SON,
DAVID EGAN.
AND BY THE WAY, WE HAVE ALL OF
OUR PRIOR VOICE OF THE
PARTICIPANT SESSIONS, THEY ALL
HAVE BEEN RECORDED.
AND THEY CAN BE ACCESSED BY THE
NIH VIDEOCAST.
SO KATHLEEN, OVER TO YOU.
>>AS YOU SAID BEFORE, THIS IS
SAD BUT AT THE SAME TIME, IT IS
REALLY TIME TO SAY THANK YOU.
THANKS FOR INVITING ME AS A
VOICE OF THE PARTICIPANT WITH MY
SON, DAVID.
I HAVE LEARNED SO MUCH THROUGH
THE EIGHT YEARS.
IT WAS AN HONOR AND PRIVILEGE TO
BE CHOSEN TO SERVE.
I SAW IT MORE AS A SERVICE THAN
A TASK OR A JOB.
I HAVE LEARNED A LOT, I HAVE TO
ADMIT.
IT'S A FIELD -- RESEARCH I
UNDERSTAND BUT MEDICAL FIELD AND
PHARMACEUTICAL AND BIOGENETICS
AND ALL OF THAT WAS NEW TO ME.
NEW TO ME IN TERMS OF SCIENTIFIC
UNDERSTANDING.
BUT WHAT I THINK I LEARNED IS
THAT SCIENCE CUTS ACROSS.
I MEAN THERE ARE CERTAIN
ESSENTIAL THINGS IN SCIENCE.
IT DOESN'T MATTER WHAT SCIENCE
YOU ARE LOOKING AT.
AND IT WAS REALLY A PRIVILEGE TO
BE AMONG SUCH DIVERSE GROUP OF
PEOPLE.
SO MAYBE WHAT I TOOK AWAY FROM
HERE IS DATA IS IMPORTANT BUT
THE TOOLS THAT WE USE ARE
IMPORTANT.
AND THEN THE IMPACT, WHAT'S THE
IMPACT?
I SAID THAT LAST NIGHT AND NOW I
WANT TO REITERATE IT.
IT'S NOT ONLY ABOUT -- WHAT DO
THEY SAY SOMETIMES, BRILLIANT
SCIENTISTS IS NOT WORKING ON --
WALKING ON LAND.
THEY ARE DREAMING.
IT'S GOOD TO HAVE DREAMS BUT
MONEY SPEAKS TOO.
AND SO YOU WANT TO MAKE SURE
THAT CONGRESS CONTINUES TO FUND
YOU.
AND SO IF WE CAN SHOW THE IMPACT
AND I THINK YOU HAVE SHOWN IT.
YOU HAVE SHOWN IT IN MANY, MANY
WAYS.
AND SO I CHERISH THAT MOMENT AND
I'M GOING TO MISS BEING HERE.
AND PLEASE CALL ON ME WHENEVER
YOU NEED.
>>THANK YOU VERY MUCH,
KATHLEEN.
AND WE ARE SO HONORED BY YOUR
PRESENCE AND WE WILL TRULY MISS
YOU.
SO THANK YOU FOR SERVING AND WE
LOOK FORWARD TO SEEING YOU IN
OTHER CONTENTS LATER IN THE
INCLUDE INITIATIVE.
NEXT IS DR. LUCKY JAIN.
>>THANK YOU DR. BIANCHI.
WHAT SHOULD I SAY?
THE LAST COUPLE OF DAYS I HAVE
PARTICIPATED IN A COUPLE OF
FAREWELLS AND THOSE TYPES OF
EVENTS.
AND JUST GOING DOWN MEMORY LANE
I'M REMINDED OF AN EVENT 50
YEARS AGO.
IT WAS GRADUATION FROM MY HIGH
SCHOOL AND THE JESUIT PRINCIPLE
OF OUR SCHOOL SAID TO US,
CONSIDER YOUR PROFESSIONAL
JOURNEY AS A BUS RIDE.
AND ON THIS BUS BE OBSERVANT
WHEN PEOPLE BOARD THE BUS, WHO
COMES AND SITS WHERE.
WHO POSSESSES WHAT SKILL SET.
BECAUSE AS THE BUS GOES THROUGH
UPS AND DOWNS OF THE JOURNEY,
CALLED LIFE, YOU WILL NEED ALL
OF THEM.
THEY ARE ALL POSSESSING
DIFFERENT SKILLS.
SOME HAVE NAVIGATIONAL SKILLS.
SOME HAVE THE ABILITY TO FIX A
TIRE.
SOME WILL JUST HAVE THE ABILITY
TO CHEER EVERYONE UP.
SOME WILL HAVE THE SCIENTIFIC
DETAIL ENGRAVED IN THEIR DNA
THAT WILL ALLOW YOU TO MAKE
CLEAR DECISIONS.
BUT HE MENTIONED ONE MORE THING
ALSO BE OBSERVANT OF WHERE YOUR
BUS STOPS ON ITS WAY.
SOME OF THOSE STOPS WILL BE
SEQUENTIAL AND YOU WILL LEARN
FROM THOSE BUS STOPS.
ONE OF THOSE BUS STOPS FOR ME
WAS AT THE NICHD AND TO ALL OF
YOU THE STAFF IN THE BACK AND
THE LEADERSHIP UNDER
DR. BIANCHI.
I WANT YOU TO KNOW THAT THIS
STOP OF MY BUS, MY HUMBLE
JOURNEY AND SCIENCE AND ACADEMIA
HAS BEEN QUITE A SEQUENTIAL BUS
STOP AS FATHER ROSEN HAD
PREDICTED 50 YEARS AGO.
MY HEART IS FILLED WITH
GRATITUDE FOR ALL YOU DO EVERY
DAY AND FOR THE OPPORTUNITY YOU
HAVE GIVEN US.
>>THANK YOU LUCKY AND AGAIN, WE
WILL MISS YOU ABOUT YOU THE BUS
WILL CONTINUE TO ROLL ON BECAUSE
YOU'RE SERVING AS THE CO-CHAIR
OF THE WORKING GROUP OF COUNSEL
ON STILL BIRTH RESEARCH.
SO WE ARE GRATEFUL FOR YOU FOR
ALL YOUR CONTINUED SERVICE FOR
AN AREA THAT REALLY DOES NEED
ATTENTION.
AND THAT IS STILL BIRTH.
SO THANK YOU.
AND NEXT WE HAVE MISS MISSY
LAVENDER.
>>THANK YOU DR. BIANCHI AND
EVERYONE ASSOCIATED WITH NICHD.
FIRST OF ALL, I'M NOT A DR.
I KEEP GETTING MISLABELED.
I'M A COMMUNITY-BASED
RESEARCHER.
I WAS FORTUNATE TO GET AN SBIR
FROM NICHD WHICH LAUNCHED MY
COMPANY AND I HAVE BEEN ON
ANOTHER NIH INITIATIVES LIKE
NIDDK ON THE CONSORTIUM
ET CETERA, AND HEARD A LOT AND
PARTICIPATED A LOT IN RESEARCH.
BUT I HAVE BEEN SO BLOWN AWAY BY
THE PROCESSES IN THIS INSTITUTE,
BY WHAT YOU ALL -- BY WHAT WE
ALL ARE DOING.
JUST THE INCREDIBLE BREATH OF
TOPICS THAT THIS GROUP TACKLES.
AND AS HAS BEEN MENTIONED, JUST
THE FANTASTIC INITIATIVES.
SOME SO BASIC BUT SO IMPORTANT.
AND I HAD REALLY NO IDEA HOW IT
ALL HAPPENED.
I'M JUST GRATEFUL TO HAVE BEEN
IN THE ROOM.
I'M GRATEFUL FOR WHAT LITTLE
LIFE I FEEL LIKE I HAVE BEEN
ABLE TO CONTRIBUTE BASED ON ALL
OF THESE INCREDIBLE MINDS.
BUT I HAVE TOLD SO MANY PEOPLE
ABOUT THIS.
AND PEOPLE REALLY -- I HAVE NO
IDEA JUST THE DEPTH AND BREADTH
OF WHAT YOU DO.
IT'S JUST BEEN A JOY.
SO THANK YOU VERY MUCH FOR
LETTING ME BE HERE AND HELP WHEN
I COULD.
>>THANK YOU VERY MUCH, MISSY
AND WE WILL MISS YOU AS WELL AND
YOU DEFINITELY CONTRIBUTED A
UNIQUE VOICE FROM SPECIFIC
BUSINESS PERSPECTIVE WHICH HAS
BEEN VERY MUCH APPRECIATED AND
YOU ARE AN INCREDIBLE ADVOCATE
FOR WOMEN'S HEALTH.
SO WE THANK YOU.
AND LAST BUT NOT LEAST, DR. ADAM
RESNICK.
>>WE WERE ALL ON MULTIPLE
COMMITTEES AND INSTITUTIONAL
INITIATIVES AND TYPICALLY WHEN
THAT BUS STOP ARRIVES, THERE WAS
A SENSE OF RELIEF FOR MOST OF
THOSE COMMITTEES.
BUT THIS IS A REAL EXCEPTION FOR
ME, ESPECIALLY.
I THINK THIS WAS REALLY A
SPECIAL MOMENT IN TIME FOR NICHD
THAT WE GOT TO BE PARTICIPATORY
IN.
THOSE WHO WILL CONTINUE, IT
WAS -- YOU'RE JUST LAUNCHING A
NEW STRATEGIC PLAN, COVID HIT,
REPRODUCTIVE HEALTH POLICY
CHANGED DURING THAT ENTIRE TIME,
AND FOR MY BIAS, THE ROLE AND
IMPACT OF DATA INFRASTRUCTURE
AND BIG DATA AND DATA SHARING
COMPLETELY EXPLODED IN WAYS THAT
I THINK NICHD JUST HARNESSED AND
DEMONSTRATED SUCH PROFOUND
LEADERSHIP IN TAKING CHARGE OF
THIS.
AND FOR ME, A SENSE OF
PROFESSIONALISM AND THE STAFF
AND THE DEDICATION THAT
EVERYBODY REPRESENTED, WHICH IS
TOTALLY INSPIRING.
MAYBE I'LL JUST END BY -- I WAS
TALKING ON THE WAY OVER HERE AND
I KNOW HOW SPECIAL NICHDS IN A
WAY THAT JONI MENTIONED.
WHICH IS THAT THE LANDSCAPE IS
CHANGING IN WAYS THAT
PEDIATRICS, MATERNAL HEALTH, ARE
BEING BECOMING THE ANCHOR FOR
ALL HEALTH.
THE HUB OR THE STARTING POINT OF
LIFESPAN OF HEALTH.
SO THERE IS A REAL OPPORTUNITY
TO TRANSFORM HEALTH CARE AT
LARGE THROUGH THE PEDIATRIC
LENSE IN WAYS THAT I THINK NICHD
IS SO PRIVILEGED TO TAKE ON.
AND UNIQUELY.
I THINK ALL OF US WHO ARE A PART
OF THE INSTITUTIONS RECOGNIZE
THAT MOST INSTITUTIONS ARE
CHALLENGED BY CHANGE.
BUT I REALLY FEEL LIKE THE
PEDIATRIC ENTERPRISE, NICHD
ESPECIALLY IS UNIQUELY POISED
BECAUSE WHETHER IT IS MATERNAL
HEALTH OR PEDIATRICS YOU'RE
STEWARDS OF CHANGE.
THE WHOLE PROCESS OF DEVELOPMENT
OR BIRTH.
SO I THINK IT'S EMBEDDED IN
EVERYTHING I HAVE SEEN HAPPEN AS
PART OF THIS COUNSEL.
AND REALLY AMAZING WAYS THAT I
THINK THAT PROVIDES A SENSE OF
OPTIMISM FOR THAT VISION.
ON BEHALF OF PEDIATRICSED AND
MATERNAL HEALTH, MAYBE HEALTH
CARE AT LARGE.
SO VERY GRATEFUL.
LEARNED SO MUCH.
>>THANK YOU.
YOU HAVE BEEN AN ENORMOUS
CONTRIBUTOR.
IT'S BEEN A TRUE JOY TO HAVE ALL
OF YOU SERVING ON THE COUNCIL
AND CONTINUING THE BUS METAPHOR,
I THINK IT'S SAFE TO SAY THAT
YOU EARNED A FREE METRO CARD.
AND WE WILL ASK YOU TO GET ON
THE BUS OR TRAIN IN THE FUTURE
TO HELP ADVISE US ON
PARTICULARLY WITH THE STRATEGIC
PLAN, FOR EXAMPLE.
OR AREAS WHERE WE GOT IT RIGHT
AND THE WHERE WE COULD HAVE DONE
BETTER AND WHAT DO YOU SEE AS
IMPORTANT TOPICS IN THE FUTURE?
BUT WE ARE ALL -- I'M SPEAKING
ON BEHALF OF THE ENTIRE
INSTITUTE.
WE ARE ALL IN INCREDIBLY
GRATEFUL FOR YOUR INPUT, YOUR
ENTHUSIASM.
YOU NEVER SAID NO TO ANYTHING WE
ASKED.
AND IT'S JUST BEEN AN INCREDIBLE
JOY.
SO THANK YOU.
[ APPLAUSE ]
NOW I'LL TURN THE MICROPHONE
OVER TO REBEKAH.
>>IT'S ALWAYS VERY
ANTI-CLIMATIC TO COME FROM NIECE
SORT OF MOVING AND MEANINGFUL
TALKS TO THE BUSINESS OF
COUNCIL.
BUT NEVERTHELESS, THIS AFTERNOON
WE ARE PRESENTING FOUR CONCEPTS
FOR YOUR CONSIDERATION.
FOR EACH CONCEPT, I'M GOING TO
ASK THE STAFF TO GIVE YOU A
BRIEF OAF VIEW OF THE INITIATIVE
AND THEN ASK YOU AS COUNCIL
MEMBERS FOR DISCUSSION REGARDING
THE CONCEPT.
AT THE CONCLUSION OF THE
DISCUSSION, FOR EACH CONCEPT
I'LL ASK YOU TO VOTE ON WHETHER
YOU CONCUR OR NOT.
SO, OUR FIRST CONCEPT WILL BE
PRESENTED BY DR. TRACY KING FROM
THE INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES
BRANCH.
AND SHE'LL PRESENT THE CENTERS
FOR COLLABORATIVE RESEARCH IN
FRAGILE X AND FMRI ASSOCIATED
CONDITIONS.
TRACY?
>>THANK YOU FOR THE OPPORTUNITY
TO PRESENT THIS CONCEPT TODAY.
PROGRAM SEEKS COUNSEL APPROVAL
FOR RENEWAL OF INITIATIVE
ENTITLED CENTERS FOR
COLLABORATIVE RESEARCH AND
FRAGILE X AND THE FMR1
ASSOCIATED CONDITIONS.
THIS IS THE MOST COMMON FORM OF
INHERITED INTELLECTUAL
DISABILITY CAUSED BY LARGE
MUTATIONS CALLED FULL MUTATIONS
AND THE GENE ON THE X CHROMOSOME
THAT LEAD TO GENE SILENCING.
ANOTHER CATEGORY OF FMR1
MUTATIONS CALLED PRE-MUTATIONS
PLAY A ROLE IN A RANGE EVER
MEDICAL CONDITIONS THAT AFFECT
CHILDREN, ADULTS AND SENIORS.
SINCE 2000, CONGRESS DIRECTED
NIH TO FUND AT LEAST THREE
MULTIDISCIPLINARY RESEARCH
CENTERS.
THESE CENTERS CONTRIBUTED TO
MAJOR ADVANCES IN UNDERSTANDING
THE MECHANISMS THAT UNDERLIE
THESE CONDITIONS AS WELL AS THE
IDENTIFICATION OF THERAPEUTIC
CAR GETS THAT SHOWN PROMISE IN
CELLULAR ANIMAL STUDIES.
HOWEVER, THESE PRODUCTS AND
FINDINGS HAVE NOT TRANSLATED TO
EFFECTIVE TREATMENTS FOR
INDIVIDUALS WITH THESE
CONDITIONS.
THE GOAL OF THE PROGRAM IS TO
ACCELERATE THE TRANSLATION OF
DISCOVERY TO EFFECTIVE CLINICAL
INTERVENTIONS.
>>ARE THERE QUESTIONS OR
COMMENTS FOR TRACY?
>>THANK YOU.
CAN YOU TELL US A LITTLE BIT,
SINCE THIS HAS BEEN IN PLACE
SINCE 2000, WHAT ARE SOME OF THE
ADVANCEMENTS AND WHERE DO WE
HOPE TO GO NEXT?
>>THAT'S A GREAT QUESTION.
SO, THERE HAVE BEEN MULTIPLE
GENE TARGETS THAT HAVE BEEN
FOUND TO BE RESPONSIVE TO
THERAPEUTIC AND PHARMACOLOGICAL
TREATMENTS, PARTICULARLY IN
MOUSE MODELS BUT ALSO IN FLY
MODELS AND CELLULAR MODELS AND A
LOT OF WORK IN THINKING ABOUT
HOW BIOMARKERS BETWEEN ANIMAL
MODELS AND HUMANS MIGHT
TRANSLATE IN A WAY THAT
ACCELERATES MOVEMENT TO CLINICAL
TRIALS.
MANY OF THE ADVANCES IN THESE
CENTERS HAVE GONE ON TO BE
TESTED IN CLIN DALTRIALS.
UNFORTUNATELY, THOSE CLINICAL
TRIALS HAVE NOT YET RESULTED IN
FINDINGS OF EFFICACIOUS
INTERESTS VENTIONS BUT LED THE
FIELD TO START THINKING ABOUT
WHAT ARE THE DIFFERENCES BETWEEN
ANIMAL MODELS AND HUMANS AND HOW
DO YOU MODEL THE HETEROGENEITY
OF HUMANS WITH FMR1 ASSOCIATED
CONDITIONS BETTER USING ANIMAL
MODELS.
>>OTHER QUESTIONS?
IF THERE IS NO FURTHER
DISCUSSION, IS THERE A MOTION TO
APPROVE?
NEIL PERRY MOVE TO APPROVE?
>>SECOND.
>>ALL IN FAVOR?
ALL RIGHT.
THANK YOU VERY MUCH.
SO NEXT IS DR. SONIA LEE, THE
CHIEF OF THE MATERNAL AND
PEDIATRIC INFECTIOUS DISEASE
BRANCH.
AND CELL PRESENT OPTIMIZING
HEALTH OF CHILDREN IN
ADOLESCENCE WITH PERINATAL HIV
EXPOSURE.
>>THANK YOU FOR THE OPPORTUNITY
TO PRESENT THIS CONCEPT THIS
AFTERNOON.
IT'S BEEN QUITE THE INSPIRING
AFTERNOON.
SO THANKS FOR THAT AS WELL.
SO WE ARE SEEKING COUNCIL
APPROVAL FOR INITIATIVE TITLED,
OPTIMIZING THE HEALTH OF
CHILDREN AND ADD LES WHENCE
PERINATAL HIV EXPOSURE.
THE NUMBER OF CHILDREN EXPOSED
TO HIV AND ANTI-RETROVIRAL
THERAPY IN UTERO AND DURING
BREASTFEEDING WHO ARE UNINFECTED
AND THUS NOT LIVING WITH HIV
WILL CONTINUE TO INCREASE FROM
THEIT SOMEWHATTED 15.9 MILLION
CHILDREN IN 2021.
FURTHERMORE, INCREASING NUMBER
OF THESE CHILDREN ARE NOW
GROWING INTO ADOLESCENCE AND
ADULTHOOD.
THE GOAL OF THIS INITIATIVE IS
TO UNDERSTAND HOW THE FACTORS
CONTRIBUTING TO THE HEALTH
OUTCOMES OF POPULATIONS WHO ARE
HEU, INCLUDING SOCIAL
DETERMINANTS, INEQUITABLE ACCESS
TO SERVICES, STIGMA, STRUCTURAL
INEQUALITIES, EXPOSURES TO OTHER
INFECTIOUS DISEASES OR
ENVIRONMENTAL FACTORS AND
EXPOSURES TO NEW ART REGIMENS.
INNOVATIVE APPROACHES TO
UNDERSTAND THE LONG TERM IMPACT
OVER THE LIFE COURSE WILL ALLOW
FOR BETTER IDENTIFICATION OF
THOSE IN NEED AND OF DEVELOPMENT
OF EARLY OPPORTUNITIES FOR
PREVENTION AND TREATMENT.
>>THANK YOU.
ARE THERE QUESTIONS?
OR COMMENTS?
>>THANK YOU.
I WANT TO THANK YOU AND THE
BRANCH FOR CONTINUING TO EXPLORE
OPPORTUNITIES TO IMPROVE THE
HEALTH OF THESE CHILDREN AS YOU
SAID.
THEY ARE GROWING POPULATIONS AND
I THINK THE UNDERSTANDING OF
THEIR DISEASE PROCESS OR
POTENTIAL DISEASE PROCESSES ARE
STILL UNKNOWN AND REMAIN A BIG
TOPIC OF INTEREST, NOT ONLY IN
THE U.S. BUT AROUND THE WORLD.
THANK YOU.
>>THANK YOU.
ALL RIGHT, IF THERE ARE NO
FURTHER QUESTIONS OR COMMENTS,
IS THERE A MOTION TO APPROVE?
>>SHERRY BARK IN MOVE TO
APPROVE.
>>SECOND AND ALL IN FAVOR?
THANK YOU SO MUCH.
SO NEXT UP IS DR. STEVEN KAUFMAN
FROM THE CONTRACEPTION RESEARCH
BRANCH WHO WILL BE PRESENTING
WOMEN'S REPRODUCTIVE HEALTH
RESEARCH PROGRAM.
>>THANK YOU AND GOOD AFTERNOON.
DR. BIANCHI, YOU HAD TO PICK THE
HOTTEST DAY OF THE YEAR TO MAKE
ME PUT ON A TIE AND COME INTO
THE OFFICE.
I HAVE BEEN FORTUNATE TO WORK
FULL-TIME FROM HOME FOR A LONG
TIME NOW, WHICH IS GREAT.
BUT IT'S GREAT TO BE HERE TOO.
THIS IS A RECOMPETITION OF THE
WOMEN'S REPRODUCTIVE HEALTH
RESEARCH CAREER DEVELOPMENT
PROGRAM, WHICH WE REFER TO AS
WRHR.
THE INITIATIVE USES THE K12
INSTITUTIONAL CAREER DEVELOPMENT
PROGRAM MECHANISM TO PREPARE
JUNIOR FACULTY WHO RECENTLY
COMPLETED THEIR OBGYY TRAINING
AND PREPARE FOR INDEPENDENT
RESEARCH CAREERS.
OUR GOAL IS TO CONTINUE BUILDING
A NATIONAL CADRE OF OUTSTANDING
JUNIOR CLINICIAN INVESTIGATORS
WHO WILL STRENGTHEN THE FIELD OF
OBSTETRICS AND GYNECOLOGIY AND
CONTRIBUTE TO THE IMPROVEMENT OF
WOMEN'S HEALTH.
THIS NOTICE OF FUNDING
OPPORTUNITY WILL SUPPORT
TRAINEES PURSUING BASIC,
TRANSLATIONAL OR CLINICAL
RESEARCH FOR 2-5 YEARS EACH
TRAINEE.
AND IT PROVIDES UP TO FIVE YEARS
OF SUPPORT FOR EACH
PARTICIPATING INSTITUTION.
IT HAS BEEN RE-ISSUED EVERY FIVE
YEARS SINCE 1998.
>>ARE THERE ANY QUESTIONS OR
COMMENTS ON THIS CONCEPT?
>>I HAD ONE QUICK QUESTION.
DOES THIS INTERACT AT ALL WITH
SOME OF THE PREVIOUS
PRESENTATIONS WE SAW INDICATING
THAT THERE WAS SIGNIFICANT
HEALTH CARE DESERTS IN THIS
SPACE?
>>I'M NOT SURE I HEARD ALL OF
THAT.
IT SOUNDS LIKE YOU'RE ASKING TO
WHAT EXTENT DOES THIS INTERACT
WITH THE PREVIOUS PRESENTATIONS
TODAY?
>>ON THE CENTERS OF EXCELLENCE
BEING LOCATED WHERE THERE ARE
DESERTS IN MATERNAL CARE.
>>DOES THIS ADDRESS IN ANY WAY
OR INTERACT WITH OR ADDRESS THE
FACT THAT THERE ARE SIGMA TERNAL
HEALTH DESERTS?
>>THAT'S A REALLY GOOD POINT.
WE SHOULD WORK THAT INTO THE RFA
TO WHATEVER EXTENT WE CAN.
SO YOU PROBABLY KNOW, IT'S OPEN
COMPETITION.
SO ANY INSTITUTION IN THE U.S.
CAN APPLY AND THEY'LL BE
ENCOURAGED TO APPLY.
MAYBE WE CAN TAKE SPECIALESTS TO
ENCOURAGE THOSE YOU'RE REFERRING
TO.
-- SPECIAL EVIDENCE.
>>I THINK THIS IS A VERY
WORTHWHILE PROGRAM BUT SINCE
IT'S BEEN OFFERED SINCE 1998,
VERY INTERESTING TO LOOK AT THE
OUTCOMES OVER TIME.
BECAUSE I THINK THERE IS A LOT
OF STRESS WITHIN THE OBSTETRICS
TRAINING COMMUNITY IN TERMS OF
THE TRANSITION TO SUCCESS AS
YOUNG SCIENTISTS OR CLINICAL
INVESTIGATORS.
SO I'M HOPING THAT THERE ARE
SOME OVERSIGHT OF THE OUTCOMES
OF THE BENEFICIARIES OF THE
PROGRAM AND IS YOUR FEELING
POSITIVE OR DO YOU THINK WE ALSO
HAVE TO CONFIRM MAYBE SOME OTHER
STRESSORS ON THE ACADEMIC
COMMUNITY IN OBSTETRICS?
>>AGAIN I'M NOT SURE I CAUGHT
ALL OF THAT.
BUT I THINK I GOT THE GIST OF
IT.
WE ARE VERY BIG ON OUTCOMES
HERE.
WE DON'T JUST FOCUS ON HANDING
OUT MONEY.
AS YOU KNOW, EACH GRANTEE HAS TO
PREPARE AND PRESENT AN ANNUAL
REPORT SAYING WHAT HAPPENED
THATTER.
>>>, WHAT WENT WELL, WHAT
DIDN'T, WHAT THEY CAN DO ABOUT
THINGS THAT DIDN'T GO WELL.
THEY DON'T JUST SEND THEM IN.
WE REVIEW THEM AND IF NECESSARY,
FOLLOW-UP ON ISSUES THAT NEED TO
BE FOLLOWED UP ON.
I'M NOT SURE IF THAT
ADDRESSES --
>>IT'S A GOOD POINT.
I WAS TALKING ABOUT THE LONG
TERM OUTCOMES.
SO IF YOU LOOK IN 5-10 YEARS
LATER AND THEN OVER TIME, DO WE
THINK PEOPLE ARE LESS LIKELY TO
STAY ACTIVE IN A CAREER IN
ACADEMICS AND IF SO --
>>I UNDERSTAND BETTER.
I CAN'T SAY MUCH ABOUT IT
BECAUSE I'M NOT SURE IT'S IN
PRESS OR JUST ACCEPTED AND NOT
QUITE IN PRESS YET.
BUT A THOROUGH SOLARLY REVIEW OF
THE WHOLE HIST OF THE PROGRAM
SINCE IS STARTED GOING OVER WHAT
HAS HAPPENED, WHAT IS HAS
PRODUCED, WHICH I LOOK FORWARD
TO SEEING THAT.
AND I'M SURE YOU'LL SEE IT
QUICKLY ONCE IT COMES OUT AS
WELL.
I CAN TELL YOU THAT AS OF JULY,
THE CURRENT -- THE AWARDS MADE
IN RESPONSE TO THE MOST RECENT
RFA FIVE YEARS AGO SUPPORTED 43
SCHOLARS AND THOSE 43 ARE THE
TRAINEES AND MAKES THEM FEEL
BETTER.
OF THOSE 43 -- I'M SORRY, YES,
43 PEOPLE HAVE SUBMITTED 40
APPLICATIONS TO NIH FOR GRANT
SUPPORT.
AND OF THOSE 40 -- I'M TRYING TO
READ THIS QUICKLY, A BUNCH HAVE
BEEN PAID.
I CAN GET YOU MORE DETAILS
SEPARATELY.
>>THANK YOU VERY MUCH.
>>I SEE DR. NEIL PERRY AND
DR. VARGA.
DR. PERRY?
>>THERE IS A PAPER COMING OUT
IN AMERICAN JOURNAL OF
OBSTETRICS AND GYNECOLOGY THAT
DOES LOOK AT TIMELINE.
AND OUTPUT FROM THIS GRANT
MECHANISM.
AND I BELIEVE 70% OF PEOPLE ARE
STILL ACTIVE IN SOME FORM OF
RESEARCH, FROM WHAT I RECALL.
AND MANY HAVE BECOME CHAIRS OR
RESEARCH DETECTORS FOR A BIG
PROGRAM.
SO I THINK THERE HAS BEEN GREAT
RETURN ON INVESTMENT.
I THINK YOUR COMMENT ABOUT ARE
WE ADDRESSING THE STRESSORS FOR
SURGEONS WHO ARE ENGAGED IN
RESEARCH AS AN IMPORTANT ONE.
AND I THINK IT'S A GOOD THING TO
THINK ABOUT AND IT IS SOMETHING
WE SHOULD DISCUSS BECAUSE IT IS
DIFFERENT FOR SURGEONS WHO ARE
ENGAGED IN RESEARCH THAN FOR
NON-SURGEONS.
>>WE HAVE DATA ON WHAT HAPPENS
IN PREVIOUS SCHOLARS WHO
GRADUATED FROM THIS PROGRAM.
I DIDN'T BRING THAT WITH ME.
I'M HAPPY TO SEND YOU WHAT I
HAVE AFTER THE MEETING.
>>CHRISTINA DO YOU HAVE A
QUESTION?
>>THANK YOU VERY MUCH.
IN GENERAL I'M VERY SUPPORTIVE.
ABOUT A QUESTION I REPRESENT THE
INDUSTRY HERE ON THIS COUNCIL.
SO I'M WONDERING IF THERE WILL
BE ANY CONSIDERATIONS BUILT INTO
THE NEXT ITERATION, ESPECIALLY
ON THE BASIC AND TRANSLATIONAL
SIDE FOR PARTNERSHIPS,
COLLABORATIONS WITH
TRANSLATIONAL UNITS WITHIN THE
INDUSTRY TO TRY AND SEE SOME
POTENTIAL ASSETS OR POTENTIAL
TARGETS BECOME REALIZED IN THE
CONTEXT OF THERAPEUTIC
DEVELOPMENT?
THANK YOU.
>>AGAIN, I'M SORRY, THE SOUND
UP HERE IS NOT AS GOOD.
IT SOUNDS LIKE YOU'RE ASKING TO
WHAT EXTENT WILL TRANSLATIONAL
RESEARCH BE PURSUED?
IS THAT RIGHT?
>>NO.
WHAT I WAS -- I'LL TRY AND THROW
MY VOICE TOO.
I REPRESENT THE PHARMACEUTICAL
INDUSTRY HERE IN THIS COUNCIL.
SO SPECIFICALLY TO THE BASIC AND
TRANSLATIONAL COMPONENT.
>>PUT THE MICROPHONE CLOSER TO
YOUR MOUTH.
>>THIS IS THE CLOSEST I CAN
GOAT MY MOUTH.
SPECIFIC TO THE BASIC AND
TRANSLATIONAL COMPONENT, IS
THERE AN INTENTION FOR THIS NEXT
ITERATION TO BETTER PARTNER,
COLLABORATE WITH BASIC AND
TRANSLATIONAL UNITS WITHIN THE
INNOVATIVE INDUSTRY SO WE CAN
SEE SOME POTENTIAL DIRECTION
TOWARDS TARGETS THAT MIGHT BE
ABLE BE REALIZED INTO
THERAPEUTIC INTERVENTIONS IN.
>>I SEE.
WELL, I THINK THE HISTORY OF
THIS PROGRAM IS WE LEAVE THE
TRAINEES OBVIOUSLY GET TRAINED
IN DOING RESEARCH.
THEY DEVELOP PROJECTS BASED ON
THEIR INTEREST AND WHAT THE
INSTITUTION RECOMMENDS AND WHAT
THEIR MENTORS AND SO FORTH.
SO WE DON'T SAY WE WANT YOU TO
DO WHAT YOU JUST SAID.
BUT THAT SOUNDS GREAT.
AND I WOULD THINK IN THIS
INDUSTRIAL FOLKS CAN TALK TO THE
GRANTEE -- REPRESENTATIVES,
PIs AND THE RESEARCH DIRECTORS
TO SAY, TO HAVE A CONVERSATION
AND SEE WHAT CAN COME OUT OF
THAT.
BUT WE DON'T SAY, WE DON'T
SPECIFY DO THIS KIND OF PROJECT
BEYOND THE GENERAL THRUST THAT I
DESCRIBED.
>>I WANTED TO BUILD OFF MY
COLLEAGUE'S COMMENTS.
I'M WONDERING FOR THESE
PROPOSALS THAT COME TO US THAT
ARE REALLY REOCCURRING
INITIATIVES FROM A COUNSELOR
SUSPECTIVES IF AS WE CONSIDER
THEM, AND YOU'LL LET US KNOW
PROCESS WISE IF THIS CONCEPT
LEVEL IS THE PLACE FOR THE
CONVERSATION.
BUT IT WOULD BE HELPFUL TO KNOW
WHAT THE PRIOR OUTCOMES WERE AS
WELL AS HOW DO WE INTEND TO MOVE
FORWARD GIVEN THE NEEDS OF NOW
AND THE TOOLS OF TODAY?
SO AND PERHAPS THE CONCEPT
PROPOSAL PHASE ISN'T THE
CONVERSATION HERE.
BUT I DON'T WANT US TO FEEL LIKE
IT'S A RUBBER STAMP.
OF COURSE IT'S A GREAT IDEA.
THIS IS AN AREA WE WANT TO
SUPPORT.
I THINK WE HAVE AN OPPORTUNITY
TO THINK ABOUT WHAT NEXT AND
WHAT NOW WITH THE TOOLS OF TODAY
SO WE CONTINUE TO EVOLVE THESE
REOCCURRING INITIATIVES.
>>I THINK WE HAVE TRIED TO KEEP
THESE SHORT AND AT A VERY HIGH
LEVEL BECAUSE THIS IS OPEN
SESSION.
SO IT'S TO NOT -- ULTIMATELY
WE'LL WRITE THE RFA.
WE DON'T WANT -- IF YOU ALL TELL
US WHAT TO WRITE, THEN IN
THEORY, YOU THEN BECOME IN
CONFLICT AND WE WOULDN'T BE ABLE
TO APPLY.
SO WE KEPT IT A VERY HIGH LEVEL
FOR THAT REASON.
BUT I DO THINK, SHERRY, YOU'RE
TALKING ABOUT AND I THINK IT
WILL COME UP WITH WE TALK ABOUT
TRAINING PROGRAMS IN ANOTHER
COUNSELOR TWO AS WELL.
PROGMALTICALLY REALLY HOW DO WE
THINK OF THESE NOT JUST AS
INDIVIDUAL PROGRAMS BUT SORT OF
OVERALL WHAT OUR OVERALL GOALS
ARE?
AND I THINK THAT'S WHERE WE
CERTAINLY WOULD BE ABLE TO HAVE
A LOT OF DISCUSSION.
BUT THE ACTUAL SHAPING OF A
INDIVIDUAL RFA, WE TRY TO KEEP
AT A VERY HIGH LEVEL SO THAT YOU
ALL POTENTIALLY COULD ACQUIRE IF
RELEVANT.
I WILL SAY, OTHER INSTITUTES CAN
DO IT DIFFERENTLY AS WELL.
SO LIKE MANY THINGS AT NIH,
THERE ARE 27 INSTITUTES AND 54
WAYS OF DOING THINGS.
>>MAY I ADD ONE LITTLE THING?
ONE THING I'VE MISSED DURING THE
ADVISORY COUNCIL IS TO
UNDERSTAND HOW DO YOU DECIDE
WHAT PROPOSALS GO OUT?
HOW DO YOU DETERMINE WHERE ARE
THE GAPS IF AND WHAT SHOULD -- I
MEAN I MANUAL IN THERE MUST BE A
DISCUSSION?
MAYBE THIS IS NOT A GOOD TIME
FOR IT, BUT WHENEVER IS A GOOD
TIME, JUST CURIOSITY.
HOW DO YOU DECIDE?
>>SO LET ME TRY WITH THAT ONE.
THIS IS THE RIGHT PLACE.
THIS IS THE RIGHT PLACE AND THE
RIGHT TIME TO THINK ABOUT HOW
YOU TAKE A POT OF MONEY AND IN
SOME LARGE BIG PICTURE VIEW
DECIDE HOW YOU MIGHT ALLOCATE TO
DIFFERENT PRIORITIES.
AND I THINK CAROLINE SPOKE ABOUT
THAT PROCESS AND I'M GOING TO
SAY THAT WAS IN JUNE THAT SHE
SPOKE ABOUT THAT.
AND I'M HAPPY TO REFRESH YOUR
MEMORY ON THAT POINT.
BUT I THINK THAT THE UPSHOT OF
THAT CONVERSATION WAS THAT WE
UNDERGO A LENGTHY PLANNING
PROCESS WITHIN THE INSTITUTE
WHERE LOTS OF IDEAS BUBBLE UP.
AND ONLY A FEW OF THEM MOVE
FORWARD BUT THE IDEAS THEMSELVES
COME FROM THE COMMUNITY AND FROM
THE LITERATURE AND FROM BEING
WITHIN THE RESEARCH FIELD.
IT'S NOT A THEORETICAL EXERCISE
WHERE WE ALL SIT AROUND IN
ARMCHAIRS AND SMOKE PIPES SO TO
SPEAK AND COME UP WITH OUR BEST
IDEAS.
BUT RATHER IT IS VERY MUCH A
REFLECTION OF THE RESEARCH WORLD
IN WHICH WE LIVE.
AND THE INPUT THAT WE HEAR AT
THESE MEETINGS AND OTHER
MEETINGS.
AND THAT BALANCED BY THE REALITY
OF A LIMITED BUDGET TO DO
ANYTHING THAT IS DISCRETIONARY
WHILE STILL MAINTAINING A
VIBRANT COMMUNITY OF RESEARCHERS
WHO CAN COME FORWARD WITH THEIR
OWN IDEAS.
>>I WOULD JUST ADD TO THAT,
THAT THIS IS WHERE OUR PRIOR
STRATEGIC PLAN WAS VERY
IMPORTANT BECAUSE WE HAD NOT HAD
A STRATEGIC PLAN FOR 20 YEARS.
SO WE WERE FUNDING A LOT OF
GRANTS WITHOUT REALLY A
STRATEGIC OVERVIEW OF WHERE DID
WE WANT TO GO DEEP, AS CATHERINE
SAID.
WHERE DID WE WANT TO THE LEAD
AND WHERE DID WE WANT TO
PARTNER?
SO THE STRATEGIC PLAN IS
IMPORTANT AND THAT'S WHERE WE
WILL BE ENCOURAGING FEEDBACK ON
THE DRAFT REVISION.
BUT ALSO REMEMBER THAT OUR
PROGRAM OFFICIALS ARE ALL
SCIENTIST IN THEIR OWN RIGHT.
THEY ARE EXPERTS.
WE FUND THEM TO GO TO MEETINGS
SO THEY HEAR ABOUT WHAT IS BEING
DISCUSSED AND THEN THEY BRING
THAT BACK TO THE INSTITUTE FOR
FURTHER DISCUSSION TO DISCUSS
WHERE WE SHOULD BE FUNDING.
>>ALL RIGHT.
ARE THERE ANY FURTHER COMMENTS
OR QUESTIONS?
IF NOT CAN I HAVE A MOTION TO
APPROVE?
>>I MAKE A MOTION TO APPROVE.
>>AND SECOND.
>>SECOND.
>>AND ALL IN FAVOR.
ALL RIGHT, VERY GOOD.
THANK YOU.
AND THEN FINALLY TO CLOSE OUT
THE CONCEPTS PORTION OF THE ME
MEETING, FROM THE POPULATION
DYNAMICS BRANCH WILL PRESENT
POPULATION DYNAMICS RESEARCH
INFRASTRUCTURE PROGRAM OR I POP.
>>GOOD AFTERNOON, EVERYONE.
I'M NOT JIM GRIFFIN.
SORRY TO DISAPPOINT.
AND THANKS FOR STICKING WITH ME
THROUGH THIS LAST A LITTLE BIT.
STOW PROGRAM SEEKS COUNCIL
APPROVAL OF THE POPULATION
DYNAMICS RESEARCH INFRASTRUCTURE
PROGRAM OR IPOP INITIATIVE.
WHICH WILL SUPPORT RESEARCH
INFRASTRUCTURE FOR NEW AND
EXISTING HIGHLY PRODUCTIVE
POPULATION DYNAMICS RESEARCH
CENTERS.
SOCIAL ECONOMIC AND BEHAVIORAL
FACTORS SIGNIFICANTLY EFFECT
HUMAN HEALTH AND DEVELOPMENT AND
POPULATION DYNAMICS RESEARCH IS
AT THE FOREFRONT OF
INVESTIGATING HOW HEALTH,
DEVELOPMENT AND PRODUCTIVITY
ACROSS THE LIFESPAN AND
GENERATIONS ARE AFFECTED BY
THESE NON-MEDICAL FACTORS, WHICH
ARE COMMONLY REFERRED TO AS
SOCIAL DETERMINANTS OF HEALTH.
THERE ARE THREE MAIN AREAS OF
POPULATION DYNAMICS RESEARCH
THAT NICHD SUPPORTS.
DEMOGRAPHY, THE SCIENTIFIC STUDY
OF HUMAN POPULATIONS, SOCIAL AND
BEHAVIORAL RESEARCH ON
REPRODUCTIVE HEALTH AND RESEARCH
ON SOCIAL, ECONOMIC,
INSTITUTIONAL, GEOGRAPHIC AND
OTHER FACTORS THAT EFFECT HUMAN
HEALTH AT THE POPULATION LEVEL.
SO THE OVERALL OBJECTIVE OF THE
IPOP PROGRAM IS TO IMPROVE THE
IMPACT AND SCIENTIFIC
PRODUCTIVITY OF POPULATION
DYNAMICS RESEARCH IN ALL THOSE
DOMAINS IN THE UNITED STATES AND
THE PROGRAM HAS THREE PRIMARY
GOALS.
FIRST, TO PROVIDE SCIENTIFIC,
TECHNICAL AND DEVELOPMENTAL AND
ADMINISTRATIVE RESEARCH
INFRASTRUCTURE SUPPORT FOR
SCIENTISTS AT THESE EXISTING
POPULATION DYNAMICS RESEARCH
CENTERS.
TWO, TO EXTEND ACCESS TO THAT
RESEARCH INFRASTRUCTURE SUPPORT
TO EXTERNAL POPULATION
SCIENTISTS WHO ARE EITHER NOT IN
THOSE POPULATION CENTERS OR AT
POPULATION CENTERS THAT ARE NEW
OR SMALL OR ARE AT CENTERS THAT
ARE NOT WELL FUNDED.
AND THEN THREE, HELP SUPPORT
NIMBLE RESEARCH ON EMERGING
ISSUES IN PUBLIC HEALTH THROUGH
THAT RESEARCH INFRASTRUCTURE.
FOR EXAMPLE, THINGS LIKE
COVID-19 OR MONKEY POX OR POLICY
CHANGES ON REPRODUCTIVE HEALTH.
SO POPULATION DYNAMICS RESEARCH
IS VERY DATA INTENSIVE.
IT RELIES ON LARGE LONGITUDINAL
POPULATION REPRESENTATIVE
DATASETS OR NATURAL EXPERIMENTS
WHERE YOU OFTEN HAVE TO GROUP OR
CLUSTER RANDOMIZED.
AND SO, THIS RESEARCH IS MOST
TIME AND COST EFFECTIVE WHEN
DATASETS AND ADMINISTRATIVE,
METHODOLOGICAL, TECHNICAL AND
SCIENTIFIC RESOURCES ARE SHARED.
SO THIS RFA SUPPORTS RESEARCH
INFRASTRUCTURE AT THESE
PRODUCTIVE POPULATION DYNAMICS
RESEARCH CENTERS TO FACILITATE
THIS TYPE OF COOPERATION AND
THAT HELPS TO ADVANCE THE
DEVELOPMENT OF JUNIOR
SCIENTISTS, FREE UP SCIENTISTS
TO FOCUS ON THEIR RESEARCH
RATHER THAN A LOT OF THOSE
ADMINISTRATIVE DETAILS AND ALSO
ENABLE SCIENTISTS TO BETTER
CONDUCT BETTER RESPONSE
RESEARCH.
>>THANK YOU.
ARE THERE QUESTIONS OR COMMENTS?
>>IS THIS A NEW PROGRAM OR --
RENEWAL.
>>IT'S A RENEWAL, YES.
>>AND HOW LONG HAS IT GONE ON?
>>ARE YOU DOING ANYTHING
DIFFERENT TO FOLLOW 9 OTHER
DISCUSSIONS?
ARE YOU DOING ANYTHING DIFFERENT
OR LOOKING FOR ANYTHING
DIFFERENT IN THIS THAN
PREVIOUSLY?
>>WE ARE DOING SOME THINGS VERY
DIFFERENT.
THIS PROGRAM HAS EXISTED IN
VARIOUS ITERATIONS FOR A LONG
TIME.
THE CURRENT VERSION OF THIS, OF
OUR POP CENTER PROGRAM HAS
EXISTED ROUGHLY SINCE 2001.
SO, THERE ARE VARIOUS VERSIONS
OF IT BEFORE THAT THAT WERE
QUITE DIFFERENT IN THEIR
STRUCTURE AND DESIGN.
AND WHAT IS REALLY DIFFERENT NOW
IS, I THINK IN THIS VERSION IN
PARTICULAR, THE FOCUS ON RAPID
RESPONSE RESEARCH IS ONE PIECE.
AND ALSO A DIFFERENT KIND OF
FOCUS ON EXTENDING THE RESEARCH
AND THE RESOURCES OUTWARD, VERY
EXPLICITLY.
ONE OF THE CHANNELS IS THAT
THESE ARE NOT DESIGNED TO BE
DOLLARS THAT HELP START NEW
PROGRAMS.
I MEAN, THE SIZE OF THESE GRANTS
ARE USUALLY ABOUT THE SIZE OF AN
RO1.
SO THEY ARE SMALL AND YOU CAN
SEE THIS ON REPORTER IF YOU LOOK
THEM UP.
SO, BUT THE IDEA IS THAT, SO
THEY ARE HELPING AGAIN,
INFRASTRUCTURE AWARDS.
BUT THEY PROVIDE THIS BASELEVEL
OF SUPPORT THAT THEN HELPS
PEOPLE AT THOSE INSTITUTIONS
THEN BE ABLE TO DO THEIR
RESEARCH PROJECTS MORE
EFFECTIVELY.
AND SO, IT PROVIDES THAT KIND OF
BASELINE AND SO THE HOPE IS THAT
THERE IS AN EXPLICIT FOCUS IF WE
MAKE IT A GOAL OF THE PROGRAM,
THEN THE INSTITUTIONS THAT ARE
GIVEN THESE AWARDS ARE GOING TO
BE EVALUATED ON THAT METRIC
GOING FORWARD AND HOW THEY
EXTEND THAT SUPPORT GOING OUT.
SO THAT IS A SHIFT IN THIS NEW
RFA.
>>CAN I JUST SAY I THINK THAT
IS INCREDIBLY IMPORTANT TO BE
THINKING OUTSIDE OF THE CENTERS.
AND IT DID MAKE ME WONDER, THE
COMMENT EARLIER ABOUT THE
VIRTUAL SUMMER EXPERIENCES.
AND I WONDERED IF POPULATION --
IF THESE CENTERS MIGHT BE SOME
WAY TO PARTNER IN THAT?
>>THANK YOU.
>>I WAS GOING TO MAKE ONE
COMMENT.
YOU MENTIONED MONEY FOR DATA
INFRASTRUCTURE.
AND THAT HAS BEEN A REAL
REVOLUTION IN THE PAST FIVE
YEARS, THE SOCIAL AND ECONOMIC
AND POPULATION RESEARCH.
THE KIND OF REALLY NEW AND
EXCITING ADMINISTRATIVE DATASETS
THAT REALLY REQUIRE A LOT OF
RESOURCES AND CREATE AND
MAINTAIN, AND THAT IS EVEN IF
YOU HAVE FUNDED THAT IN THE
CARDS, IT'S REALLY VERY
DIFFERENT NOW.
MUCH MORE IMPORTANT.
>>THANK YOU.
>>OTHER DISCUSSION?
ALL RIGHT, MOTION TO APPROVE?
>>MOVE TO APPROVE.
>>ALL IN FAVOR.
OKAY.
DR. BIANCHI.
>>THANK YOU, DR.RA SOULY.
THANK YOU ALL.
THIS CONCLUDES THE FIRST DAY OF
OUR TWO DAY NICHD ADVISORY
COUNCIL MEETING.
I WANT TO YOU THAT ALL FOR
ATTENDING, ESPECIALLY THE PEOPLE
WHO HAVE ATTENDED IN PERSON.
AND WE LOOK FORWARD TO SEEING
EVERYONE TOMORROW FOR OUR CLOSED
SESSION.
FOR OUR COUNCIL MEMBERS, THE
START TIME IS 9 A.M. EASTERN
DAYLIGHT TIME AND THE EXTRAMURAL
STAFF SHOULD PLAN TO JOIN US AT
10:15 A.M.
HAVE A GREAT EVENING AND STAY
COOL.
IT'S VERY HOT OUT THERE.
THANK YOU.