>> GOOD MORNING, EVERYONE. CAN
YOU HEAR ME? EXCELLENT.
INTERESTING THE SCRIPT SAYS GOOD
AFTERNOON AND IT MIGHT BE IN
SOME TIME ZONES NOT HERE.
WELCOME TO 186th MEETING OF THE
NICHD ADVISORY COUNCIL. THIS IS
BROADCAST ON THE NIH VIDEOCAST
NETWORK. TOMORROW ON DAY TWO OF
THE MEETING, WE'LL HOLD A BRIEF
OPEN SESSION STARTING AT 9:00
A.M. FOLLOWED BY CLOSED SESSION.
I APPRECIATE EVERYONE JOINING IN
PERSON TODAY AND THOSE WHO ARE
WATCHING VIA THE VIDEO CAST.
REMEMBER TOMORROW WE'LL BE IN A
DIFFERENT LOCATION, IT IS NOT AN
ISSUE FOR THE COUNCIL, ANYBODY
ELSE ATTENDING, 6710 IN
ROCKVILLE, WITH HYBRID MEETING
FORMAT, PLEASE REMEMBER TO
UNMUTE YOURSELF AND WE HAVE IT
LOOKS LIKE PERSON'S FACE AND
PROFILE SPEAKING. REMEMBER TO
UNMUTE YOURSELF BEFORE SPEAKING
INTO YOUR HOME MICROPHONE IF
YOU'RE AT HOME AND STATE YOUR
NAME SO THAT THE TRANSCRIBER
WILL KNOW WHO IS SPEAKING. TO
SPEAK, PLEASE BE SURE TO MUTE TO
PREVENT FEEDBACK LOOP OR
INTERFERENCE, WE SHOULD BE
FAMILIAR WITH THAT. I WILL TURN
TO THE REBEKAH RASOOLY.
>> THANK YOU. MY SCRIPT SAYS
GOOD AFTERNOON, ALSO. GOOD
AFTERNOON, EVERYONE. ON THE
COUNCIL MEMBER WEBSITE, YOU
SHOULD HAVE READ, AGREED TO AND
SIGNED CONFIDENTIALITY AND
NONDISCLOSURE RULE FOR SPECIAL
GOVERNMENT EMPLOYEE BEFORE
EVALUATING ANY NIH GRANT
APPLICATION. ALSO, PLEASE
REMEMBER THAT YOU CANNOT SERVE
ON NIH PEER REVIEW PANEL WHILE
YOU SERVE AS A COUNCIL MEMBER
AND THAT YOU CANNOT PROVIDE
SECOND-LEVEL REVIEW AT COUNCIL
FOR ANY APPLICATION IN WHICH YOU
PARTICIPATED IN FIRST LEVEL PEER
REVIEW. IT IS NIH'S POLICY AN
INDIVIDUAL CANNOT SERVE ON BOTH
THE FIRST AND SECOND LEVEL OF
THE REVIEW. IN ADDITION, I WANT
TO BRING TO YOUR ATTENTION THAT
DURING THE CLOSED SESSION,
PLEASE SHUT OFF CLOUD-BASED
SERVICES SUCH AS ALEXA DEVICES
AND SO ON, THESE DEVICES MAY BE
ABLE TO CAPTURE CONFIDENTIAL
INFORMATION.
NOW I'LL TURN TO THE COUNCIL
MINUTES, MINUTES FOR JUNE 2 AND
3RD MEETING POSTED ON COUNCIL
MEETING WEBSITE FOR YOUR
CONSIDERATION. DURING YOUR
REVIEW AS COUNCIL MEMBERS OF THE
MINUTES, WE HAVE THE OPPORTUNITY
TO CORRECT THE NUMBERING OF THE
RECOMMENDATIONS FROM CLUSTER B
OF THE IMPLEMENTATION WORK
GROUP. THERE WERE NO CHANGES TO
THE TEXT OF THOSE
RECOMMENDATIONS AND SO A
CORRECTED SET OF MINUTES WAS
POSTED YESTERDAY ON THE COUNCIL
MEMBER WEBSITE AND ONCE APPROVED
WILL BE POSTED ON THE NICHD
PUBLIC COUNCIL SITE. WE'RE NOW
GOING TO VOTE ON THE MINUTES,
APPROVAL OF THE MINUTES AND
REMEMBER IF YOU ARE USING ZOOM,
THERE ARE VOTING BUTTONS THAT
YOU CAN USE UNDER REACTION. MAY
I HAVE A MOTION TO APPROVE THE
JUNE MINUTES?
>> PROCTOR LANG.
>> I MAKE A MOTION TO APPROVE
JUNE MINUTES.
>> A SECOND. JAN SCHAK JAN. PD
YOUR HAND UP. ALL RIGHT.
AND ONLINE? THANK YOU VERY
MUCH. OKAY. NOW PLEASE NOTE
THAT WE HAVE THE FUTURE MEETING
DATE ON THE AGENDA AND I'M GOING
TO READ THEM NOW, AS WELL. IN
JANUARY, ON THE 13TH AND 14th,
WILL BE VIRTUAL AS WE ALWAYS ARE
DURING OUR WINTER MEETING. JUNE
9 AND 10 WILL BE IN THE NICHD
BUILDING AT 67 ROCKLEDGE DRIVE,
SEPTEMBER 9 AND 10 NEXT YEAR
WILL BE IN THE BUILDING 45 AND
THE DATES FOR 2026 ARE ON YOUR
AGENDA, AS WELL. I'M NOW GOING
TO TURN BACK OVER TO DR
DRDR
DR. BIANCHI.
>> WONDERFUL. GOOD MORNING TO
OUR NICHD COLLEAGUES, AS WELL,
AND I GUESS I CAN CONTROL THE
SLIDES HERE. WELL, WE HAVE A
VERY, VERY BUSY AGENDA TODAY.
WE'RE GOING TO GIVE YOU AN
UPDATE ON FISCAL YEAR 2025
APPROPRIATIONS YEAR WE DON'T
HAVE A BUDGET YET FOR FISCAL
YEAR 2025 AND BY THE WAY, WE
HAVE A PRESIDENTIAL TRANSITION
COMING UP. AS IS -- I THINK IT
IS HELPFUL TO ALWAYS EMPHASIZE
THE THREE AREAS, NICHD THREE
POPULATIONS, WOMEN'S HEALTH,
REPRODUCTIVE HEALTH, FOR
EXAMPLE, AND I'LL COVER WOMEN'S
HEALTH RESEARCH INITIATIVE
ENDOMETRIOSIS AND THE IMPROVE
INITIATIVE AND THEN CHILDREN,
PEDIATRIC RESEARCH, HIGHLIGHT
RESEARCH ADVANCES IN INJURY
PREVENTION, MOOD DISORDER AND
DRIVING ADVERSITY AND
DEVELOPMENT AND REDUCING
UNNECESSARY CT SCAN. BRIEF
UPDATE ON REHAB RESEARCH AND
THEN AN UPDATE ON TRAINING AND
KUDOS TO OUR STAFF AND THEN
HIRING AND RESOURCES. WELL, WE
HAVE THE HOUSE, WE HAVE THE
SENATE, IN THE HOUSE
APPROPRIATIONS BILL, NIH WAS
PROPOSED TO RECEIVE A TOTAL
BUDGET OF $48.6 BILLION, WHICH
IS AN INCREASE OVER THE ENACTED
LEVEL OF THIS YEAR'S BUDGET OF
47.1 BILLION. YOU MAY HAVE READ
THAT THERE'S BEEN A PROPOSED
REORGANIZATION OF NIH FROM 27 TO
15 INSTITUTES. THIS WOULD
AFFECT US DIRECTLY BECAUSE NICHD
AND NICD, DEAFNESS AND
COMMUNICATION DISORDER MERRILL
LYNCH TO BECOME NATIONAL
INSTITUTE FOR DISABILITY RELATED
RESEARCH AND THAT COMBINED NEW
INSTITUTE WOULD HAVE A PROPOSED
BUDGET OF 2.3 BILLION, WHICH IS
JUST THE APPROXIMATE COMBINED
FISCAL YEAR 2024 TOTAL FOR THESE
TWO INSTITUTES. THERE WAS AN
OPPORTUNITY FOR PUBLIC COMMENT
TO THE ENERGY AND COMMERCE
COMMITTEE THAT PROPOSED THE
REORGANIZATION THAT REPORT
CLOSED ON AUGUST 16th, MAYBE
SOME OF YOU DID REGISTER YOUR
COMMENTS AND WE'RE WAITING FOR
INFORMATION ON FEEDBACK FROM THE
ENERGY AND COMMERCE COMMITTEE.
THE SENATE APPROPRIATIONS BILL
WAS A LITTLE MORE GENEROUS TO
NIH, WITH A $50.3 BILLION TOTAL
BUDGET WITH A SIGNIFICANT
INCREASE OVER THE FISCAL YEAR
'24 ENACTED LEVEL. IT AFFECTS
US DIRECTLY AND THERE WOULD BE
ADDITIONAL $20 MILLION OF
ADDITIONAL FUNDING FOR THE
IMPROVE INITIATIVE AND THAT GOES
DIRECTLY TO THE NICHD BASE AND
WHY IS THAT IMPORTANT? BECAUSE
IF CONGRESS GIVES A CERTAIN
PERCENTAGE OF INCREASE ACROSS
THE BOARD, IF WE HAVE A BIGGER
BASE THEN WE GET A BIGGER TOTAL
INCREASE. IN ADDITION, THERE
WAS 76 MILLION DOLLARS IN
ADDITIONAL FUNDING PROPOSED FOR
OFFICE OF RESEARCH ON WOMEN'S
HEALTH AT NIH AND THEY DID NOT
SAY ANYTHING ABOUT REORGANIZING
THE NUMBER OF INSTITUTES, BUT
THEY ARE PROPOSING TERM LIMITS
FOR INSTITUTE DIRECTORS TO 10
YEARS. IN ADDITION, PUBLICLY
AVAILABLE AND THERE IS A LINK
AND MIGHT BE INTERESTING TO READ
IT IF YOU HAVE NOT ALREADY,
SENATOR CASSIDY HAS WRITTEN A
WHITE PAPER, HE IS A PHYSICIAN
AND QUITE KNOWLEDGEABLE AND HE
WROTE A WHITE PAPER ENTITLED NIH
IN THE 21ST CENTURY ENSURING
TRANSPARENCY AND AMERICAN
BIOMEDICAL LEADERSHIP. IT IS
QUITE A SOPHISTICATED PAPER AND
MAY INDICATE WHERE MEMBERS OF
THE SENATE ARE THINKING. HERE
WE HAVE DR. NIH DIRECTOR AND ANY
TIME THERE IS A PRESIDENTIAL
TRANSITION THAT DIRECTLY AFFECTS
THE NIH DIRECTOR, THE NIH
DIRECTOR IS A POLITICAL
APPOINTMENT THAT REQUIRES SENATE
CONFIRMATION. SO DURING A
PRESIDENTIAL TRANSITION, ALL
POLITICAL APPOINTEES CUSTOMARILY
SUBMIT A LETTER OF RESIGNATION.
TWO POLITICAL APPOINTMENTS ARE
NIH DIRECTOR AND THE DIRECTOR OF
NATIONAL COUNCIL INSTITUTE, THEY
BOTH SUBMIT LETTERS OF
RESIGNATION AND THEN THE NEW
PRESIDENT WILL HAVE THE
OPPORTUNITY TO EITHER ACCEPT OR
REJECT THE LETTER OF
RESIGNATION. NIH IS ALREADY
WORKING WITH HEALTH AND HUMAN
SERVICES TO PREPARE PRESIDENTIAL
TRANSITION INFORMATIONAL
BRIEFING DOCUMENTS ACROSS NIH
RESEARCH PRIORITIES. WE'VE
ALREADY BEEN ASKED TO BE
THINKING ABOUT OURS, WHAT WE
WERE ASKED TO SUBMIT IN THE
PRIOR ADMINISTRATION WHEN
PRESIDENT BIDEN CAME IN, WE WERE
ASKED TO GIVE INFORMATION ON
INTELLECTUAL AND DEVELOP ME DEV
DISABILITY, REPRODUCTIVE HEALTH,
MATERNAL HEALTH AND
REHABILITATION RESEARCH. WE'LL
START WITH WOMEN'S HEALTH AND I
LIKE TO THINK ABOUT WHERE WE FIT
IN THE ECOS OF WOMEN'S HEALTH,
THERE IS A LOT OF INTEREST IN
WOMEN'S HEALTH ACROSS THE
COUNTRY AND THE WORLD. AND MANY
OF OUR 12 EXTRAMURAL BRANCHES
ARE INVOLVED IN SOME ASPECT OF
WOMEN'S HEALTH LESEARCH AND
THEY'RE LISTED HERE. OUR
BUSIEST INITIATIVE, WHICH IS
TAKING A LOT OF STAFF TIME, IS
THE WHITE HOUSE WOMEN'S HEALTH
RESEARCH INITIATIVE. THE
PICTURE HERE WITH PRESIDENT
BIDEN WAS ON THE DAY THAT HE
SIGNED THE EXECUTIVE ORDER ON
ADVANCING WOMEN'S HEALTH
RESEARCH AND INNOVATION. THIS
IS A CROSS-GOVERNMENT INITIATIVE
TO PROMOTE COLLABORATIVE
INTERDISCIPLINARY RESEARCH.
THERE HAS BEEN A LOT OF INTEREST
IN THE 12 BILLION DOLLARS THAT
HE ANNOUNCED DURING HIS STATE OF
THE UNION ADDRESS, THOSE FUNDS
HAVE NOT BEEN APPROPRIATED, WHAT
WE HAVE DONE RELATED TO THIS
EXECUTIVE ORDER INCLUDE NOTICE
OF SPECIAL INTEREST ON WOMEN'S
HEALTH RESEARCH, REVIEW OF
WOMEN'S HEALTH RESEARCH AT NIH
HAS BEEN SUBMITTED FOR
PUBLICATION. WE'VE HAD REALLY A
ROBUST RESPONSE TO THIS NOTICE
OF SPECIAL INTEREST ON WOMEN'S
HEALTH RESEARCH. WE'VE ALSO HAD
PUBLICLY AVAILABLE NIH WOMEN'S
HEALTH ROUND TABLE SERIES.
THERE WAS ONE HELD IN MAY ON THE
FUTURE OF MENOPAUSE RESEARCH.
NICHD LED ONE ON ENDOMETRIOSIS
THAT WAS HELD A FEW WEEKS AGO
AND THERE IS AN UPCOMING ONE ON
MATERNAL MENTAL HEALTH RESEARCH
AND FURTHER IMPLEMENTATION OF
THE EXECUTIVE ORDER IS UNDER
DISCUSSION AT NIH. WE HAVE AN
EXECUTIVE COMMITTEE THAT MEETS
APPROXIMATELY EVERY TWO TO FOUR
WEEKS. WHAT IS NICHD DONE IN
RESPONSE TO THE EXECUTIVE ORDER?
WE HAVE CREATED A NEW CHALLENGE
THAT HAS ALREADY BEEN LAUNCHED
THANKS TO THE NICHD STAFF, IT IS
CALLED THE RADX TECH ACT ENDO
CHALLENGE. THE RADX TECH IS THE
REGISTERED TERM THAT WAS USED TO
DEVELOP THE COVID, HOME COVID
TESTING AND IT HAS BEEN A VERY
SUCCESSFUL APPROACH, A NEW WAY
OF GETTING MONEY INTO THE
INVESTIGATOR'S HANDS MUCH
QUICKER THAN THE USUAL WAY GO
ING THROUGH THE COUNCIL. THE
ACTENDO ACRONYM STANDS FOR
ADVANCING CURES AND THERAPIES
AND ENDING ENDOMETRIOSIS
DIAGNOSTIC DELAYS.
ENDOMETRIOSIS TAKES AN ENORMOUS
AMOUNT OF TIME TO BE
DEFINITIVELY DIAGNOSED, ON
AVERAGE SEVEN TO 10 YEARS.
NICHD IS PARTNERING WITH NINDS
BEACON ANYBODY DLT /* NIBIB,
FOR THE "INNOVATION FUNNEL" TO
ACCELERATE TIME TO DIAGNOSIS,
ELIMINATE DIAGNOSIS OF CURRENT
TECHNIQUE WHICH REQUIRES LAP
LAPROSCOPY, IT IS A CHALLENGE
LIKE SHARK TANK AND THERE ARE
PAGES IN WHICH VARIOUS AMOUNTS
OF DOLLAR PRIZES ARE GIVEN TO
INVESTIGATORS OR COMPANIES THAT
ARE WORKING IN THIS AREA WITH
TOTAL $3 MILLION COMING FROM THE
NICHD BUDGET TOWARD THE PRIZES.
THE SUBMISSION TO PHASE I ARE
DUE IN OCTOBER AND WE EXPECT THE
FINAL WINNERS TO BE ANNOUNCED IN
MARCH 2026. IT IS A STAGE
CHALLENGE THAT WILL END WITH
SHOWING THAT THE TECHNOLOGY IS
FEASIBLE AND TESTED ON A
POPULATION AND MAKES A BIG
DIFFERENCE. THE IMPROVE
INITIATIVE, ANOTHER ACRONYM
IMPLEMENT MATERNAL HEALTH AND
PREGNANCY OUTCOME VISION FOR
EVERYONE. YOU HAVE HEARD ABOUT
THIS PREVIOUSLY. THIS IS A
MAJOR INITIATIVE DESIGNED TO
REDUCE MATERNAL MORTALITY AND
MORBID
MORBIDITY. WE HAVE PREVIOUSLY
TOLD YOU ABOUT 10 CENTERS OF
EXCELLENCE THAT ARE FUNDED
THROUGH THIS PROGRAM SINCE WE
LAST MET WE'VE BEEN ABLE TO FUND
TWO NEW MATERNAL HEALTH RESEARCH
CENTERS OF EXCELLENCE MAKING A
TOTAL OF 12. ONE IS UNIVERSITY
THE ILLINOIS IN CHICAGO AND ONE
IS AT UNIVERSITY OF PITTSBURGH
AND OUR NICHD STAFF VISITED TWO
CENTERS OF EXCELLENCE, ONE IN
OAK LAHOKLAHOMA, THE STATUE IS
DIGNITY OF EARTH AND SKY, IT IS
LOCATED NEAR CHAMBERLAND, SOUTH
DAKOTA AND THIS QUOTE IS FROM
THE ARTIST, DIGNITY REPRESENTS
COURAGE, PERSEVERANCE AND WISDOM
IN SOUTH DAKOTA, MY HOPE IS THE
SCULPTOR IS SYMBOL OF RESPECT
AND PROMISE FOR THE FUTURE. WE
WENT ON SITE INVESVISITS AND SH
TELL YOU HER EXPERIENCES. IN
ADDITION, WE HAVE AN ONGOING
CHALLENGE AS PART OF THE IMPROVE
INITIATIVE CALLED CONNECTING
FOR -- CONNECTING COMMUNITY FOR
MATERNAL HEALTH CHALLENGE AND
THAT IS GEARED TOWARD BUILDING
RESEARCH INFRASTRUCTURE IN
COMMUNITIES WHO ARE MOST AWARE
OF WHAT IS NEEDED IN THEIR
SPECIFIC COMMUNITY AND WE WILL
BE ANNOUNCING THE WINNERS
TOMORROW, SO STAY TUNED FOR
THAT. AND WE ARE NEARING THE
END OF RADX TECH MATERNAL HEALTH
CHALLENGE, WHICH IS DIFFERENT
FROM THE ENDOMETRIOSIS CHALLENGE
FOR POST-PARTUM MONITORING AND
DIAGNOSTIC AND THAT CHALLENGE IS
DESIGNED TO HELP PARTICULARLY
PEOPLE IN MATERNITY UNDERSERVED
AREAS. AND WE ANTICIPATE FINAL
WINNERS, WHO ARE NOW TESTING
THEIR TECHNOLOGY ON DIFFERENT
POPULATIONS, THEY WILL BE
ANNOUNCED NEXT MONTH.
WE NOW HAVE FIVE YEARS OF
SUPPORT AND PROGRESS IN THE
IMP
IMPROVE PROGRAM SO WE ARE
PLANNING A FIFTH ANNIVERSARY
MEETING THAT WILL BE HELD AND
WILL BE AVAILABLE IN A WEBINAR
FORMAT AND THAT WILL BE ON
OCTOBER 15th OF 2016. -- AND
16th. JUST TO SHOW YOU THAT
WE -- ONE OF OUR GOALS HAS BEEN
TO DISTRIBUTE FUNDS TO A WIDE
AREA OF GEOGRAPHIC NEED IN THE
UNITED STATES, THERE ARE SOME
AREAS THAT HAVE PROBLEMS WITH
MATERNAL MORTALITY BUT ARE NOT
FUNDED AND THAT IS PRIMARILY
BECAUSE THEY DID NOT SUBMIT
APPLICATIONS. WE REALLY HAVE
BEEN CONSCIOUSLY TRYING TO MATCH
FUNDS WITH NEED IN CERTAIN AREAS
AND YOU CAN SEE THAT IT IS COLOR
CODED.
SO GRAY IS COMMUNITY
IMPLEMENTATION PROGRAM FOR
EXAMPLE IN TEXAS, ARIZONA AND
NEBRASKA, MATERNAL HEALTH
RESEARCH CENTERS OF EXCELLENCE
ARE IN LIGHT BLUE, CONNECTING
COMMUNITY FOR MATERNAL
CHALLENGES IN DARK BLUE AND
PLACES THAT HAVE FUNDING FOR
SEVERAL PROGRAMS ARE INDICATED
WITH STRIPES. NOW LET'S TURN TO
CHILDREN. AND AGAIN, MANY, IF
NOT MOST OF OUR EXTRAMURAL
BRANCHES ARE INVOLVED IN CHILD
HEALTH RESEARCH AND ONE
HIGHLIGHT WE WANTED TO PRESENT
IS DROWNING PREVENTION RESEARCH.
DROWNING IS THE FOREMOST CAUSE
OF INJURY AND DEATH IN CHILDREN
AGE 1-4. IT IS THE LEADING
CAUSE FOR AGES 5-19. AND THERE
ARE STARK RACIAL AND SOCIO
ECONOMIC DISPARITIES IN DROWNING
DEATH RATES. A RECENT STUDY
IDENTIFIED DISPARITIES IN
ADOLESCENT ACCESS TO DROWNING
PREVENTION STRATEGIES SUCH AS
SWIMMING LESSON AND LIFE JACKET
USE IN SOME DEMOGRAPHIC, SAME
DEMOGRAPHIC GROUP WHO
EXPERIENCED HIGHER DROWNING
RATES. SO THAT IS A STUDY THAT
WE HAVE FUNDED MUCH NICHD
RESEARCHERS ARE ALSO
INVESTIGATING VIRTUAL REALITY
LIFE GUARD SURVEILLANCE
ENVIRONMENT TO IDENTIFY POINTS
OF FAILURE AND INFORM TRAINING.
THE EFFECTS OF SWIM INSTRUCTION
ON AUTISTIC CHILDREN SWIMMING
AND WATER SAFETY SKILLS. THIS
IS EXTREMELY IMPORTANT, CHILDREN
WITH AUTISM ARE VERY ATTRACTED
TO WATER, LIKE TO EXPLORE WATER
AND IF THEY DON'T HAVE TRAINING
IN SWIMMING, IT COULD LEAD TO
DISASTROUS CONSEQUENCES AND
OFTENTIMES CHILDREN WITH AUTISM
WANDER AWAY, THEY ARE WANDERING
TOWARD BODIES OF WATER.
LASTLY, EFFECTIVE NCI OF PUBLIC
POLICY IN REDUCING RACIAL
DISPARITY IN DROWNING AND I'VE
LOOKED AT THE PRINCIPAL
INVESTIGATORS HERE. NOW
DRIVING. PROBABLY WON'T COME AS
A SURPRISE TO YOU THAT YOUTH
WITH MOOD DISORDERS ARE LESS
LIKELY TO GET THEIR DRIVERS
LICENSES.
DRIVING REQUIRES MULTIPLE
NEUROCOGNITIVE SKILLS, EXECUTIVE
FUNCTIONING, ANTICIPATION,
SENSORY PERCEPTION AND SKILLS
OFTEN IMPAIRED IN YOUTH WITH
MOOD DISORDERS.
OBTAINING LICENSE HAS BEEN
ASSOCIATED WITH HIGHER HEALTH
AND ATTAINMENT IN YOUNG ADULT
NEVER MIND INABILITY TO LEAD
INDEPENDENT LIFE.
LACK OF LICENSE COULD BE
ASSOCIATED WITH ADVERSE OUTCOME.
YOUTH WITH DISORDER WHO OBTAIN
LICENSES HAD OVERALL RISK OF
CRASHING THAN OTHER YOUTH. THIS
IS IMPORTANT AREA THAT IS BEING
STUDIED BY ONE OF OUR
RESEARCHERS. THEN DEVELOPMENTAL
STEPS OF CHILDHOOD ADVERSITY,
EARLY CHILDHOOD ADVERSITY MAY
AFFECT NEUROLOGICAL AND
COGNITIVE DEVELOPMENT. MANY
PEOPLE KNOW THIS, OUR
INVESTIGATORS ARE WORKING ON
THIS, PARTICULARLY IN THE INTRA
MURAL AND TODAY IN OUR SEPTEMBER
COUNCIL WE WILL TRADITIONAL
HIGHLIGHT THE INTRAMURAL
PROGRAM. THE RESEARCH OF
DR. ELISE STDR.
STEPHEN GILMAN, HIS TEAM HAS
SHOWN THE COMBINATION OF
EXPOSURE TO PARENTAL DIVORCE,
SEPARATION, FAMILY LOSS,
INSTABILITY, FOR EXAMPLE, BEING
IN FOSTER CARE, CROWDED HOUSING
IN HOUSEHOLDS BELOW FEDERAL
POVERTY THRESHOLD HAVE BEEN
STUDYING KIDS AND EXPOSED
CHILDREN HAVE LOWER SCORES ON
TESTS OF VISUAL MOTOR AND
SENTENC
SENTENCERY MOTOR FUNCTIONING AND
ACHIEVEMENT TESTS.
THERE ARE LONG-TERM IMPLICATION
FOR EDUCATIONAL SUCCESS, SOCIAL
AND EMOTIONAL WELL BEING AND
PHYSICAL HEALTH IN ADULTHOOD.
THAT IS ONE REASON WE ARE PAYING
MORE DETERMINE TO SOCIAL DETERM
NANTS OF HEALTH AND LOOKING AT
POTENTIAL WAYS TO SOLVE SOME OF
THE PROBLEMS SO THERE WILL BE
BETTER OUTCOMES FOR CHILDREN.
AND LASTLY, IN THE PEDIATRIC
HEALTH SECTION, THE TEAM OF JF
HOLMES ET AL REDUCING
INAPPROPRIATE CT SCAN FOR
CHILDREN AND YOUTH, THIS IS
RESEARCH BEING PERFORMED AS PART
OF PECARN NETWORK, PEDIATRIC
EMERGENCY CARE APPLIED RESEARCH
AND THEY ARE DEVELOPING
PREDICTION RULES FOR EMERGENCY
DEPARTMENTS TO DISTINGUISH
CHILDREN WITH HIGH VERSUS LOW
RISK FOR SERIOUS ABDOMINAL OR
BRAIN INJURIES, SO THEY ARE
DEVELOPING ALGORITHM TO
DETERMINE IF A CHILD NEEDS A CT
SCAN OR DOES NOT NEED A CT SCAN
SCAN.
PREDICTION RULES WERE 100%
ACCURATE FOR SEVERE ABDOMINAL
INJURY AND 100% FOR HEAD TRAUMA
IN CHILDREN LESS THAN TWO YEARS
OF AGE AND 98.8% ACCURATE IN
CHILDREN GREATER THAN TWO YEARS
OF AGE.
PREDICTION RULES ARE VALIDATED
AND CONSIDERED SAFE FOR
MINIMIZING INAPPROPRIATE CT
SCANS IN CHILDREN. LAST, BUT
NOT LEAST, REHABILITATION
RESEARCH, THERE IS SOME
HIGHLIGHTS FROM THE NATIONAL
CENTER FOR MEDICAL RAB RAB
RESEARCH. FIRST ONE IS AEROBIC
EXERCISE MAY IMPROVE SLEEP FOR
ADL
ADOLESCENT CONCUSSION PATIENTS.
MANY CONCUSSION PATIENTS
EXPERIENCE SLEEP PROBLEMS WHICH
CAN WORSEN THEIR CONCUSSION.
150 MINUTES OF AEROBICS PER WEEK
OR BETTER ON SLEEP QUALITY
QUESTIONNAIRE IN A GROUP THAT
EXERCISE LESS. ALSO, A NEW
SURGICAL PROCEDURE ENABLE BELOW
KNEE AMPUTEE TO ACHIEVE MORE
NATURAL GAIT. WE DO INCLUDE
ADULTS IN THE NCMRR RESEARCH
PORTFOLIO.
THIS PROCEDURE ALLOW NEURAL
CONTROL VIA SEARCHS SENSOR AND
IMPROVE MOO NEUROPHYSIOLOGY
MANEUVERABILITY AND WERE BETTER
AT CLIMBING STAIRS AND AVOIDING
OBSTACLES AFTER THIS SURGICAL
PROCEDURE AND THIS IS ALSO
PUBLISHED ONLINE. AS YOU KNOW,
WE ARE VERY FOCUSED ON TRAINING
THE WORKFORCE OF THE FUTURE AND
YOU HAVE HEARD VERY CO
COMPREHENSIVE REPORTS FROM
TERESA CRUZ AND TESSY OCTOBER IN
THE PREVIOUS COUNCIL. OUR FOCUS
OR OUR RECOMMENDATIONS HAVE BEEN
NUMBER ONE, TO REINVIGERATE
INSTITUTIONAL TRAINING AND
CAREER DEVELOPMENT PROGRAMS.
RETHINK HOW WE TALK ABOUT
OUTCOMES. IT IS NOT JUST THE
OUTCOME OF BECOMING AN PROFESSOR
OR PROFESSOR. CREATE
COMMUNICATE AMONGST TRAINEES,
USE TRAINING AND CAREER
DEVELOPMENT PROGRAMS TO
DIVERSIFY NICHD REACH.
REINVIGERATE THE LOAN REPAYMENT
PROGRAM AND USE TRAINING
PROGRAMS TO SUPPORT OUR STRATEGY
RESEARCH PRIORITIES. YOU WILL
NOTICE SOME OF OUR RESEARCH
INITIATIVES, FOR EXAMPLE IMPROVE
INITIATIVE ALSO INCLUDES
OPPORTUNITIES TO TRAIN THE
WORKFORCE AND CERTAINLY OUR
NETWORKS HAVE BEEN VERY
INFLUENTIAL IN GIVING CLINICAL
RESEARCH EXPERIENCE TO TRAINEES.
SO WHAT HAVE WE DONE TO
IMPLEMENT SOME OF THESE
RECOMMENDATIONS? FIRST OF ALL,
I THINK THIS IS SOMETHING TO
REALLY CELEBRATE. THE FUNDING
FOR NICHD LOAN REPAYMENT PROGRAM
HAS INCREASED SUBSTANTIALLY IN
FISCAL YEAR '24, INCREASED BY
28% COMPARED TO FISCAL YEAR '23,
THIS IS LIFE-CHANGING FOR PEOPLE
WHO WOULD LIKE TO BE IN RESEARCH
BUT PERHAPS ARE FACED WITH
SIGNIFICANT DEBT FROM THEIR
EDUCATION. WE'RE ALSO EXPANDING
OUTREACH FOR TRAINING
OPPORTUNITIES. WE OPENED AN
OBSTETRICS BRANCH WORKSHOP FOR
CLINICAL PHARMOCOLOGY TRAINING
NETWORK A COUPLE OF WEEKS AGO
AND THIS WAS OPEN TO ALL NICHD
FUNDED TRAINEES. FURTHERMORE,
NICHD OFFICE OF HEALTH EQUITY,
KNOWN AS OHE, CREATED NEW
MATERIALS FOR EXTRAMURAL AND
INTRAMURAL TRAINING OPPORTUNITY
TO DISTRIBUTE AT SCIENTIFIC
CONFERENCES. THEY SUBMITTED
ABSTRACT FOR PRESENTATION AT
MAJOR NATIONAL MEETINGS THAT
ATTRACT VERY DIVERSE GROUPS OF
POTENTIAL INVESTIGATORS. AND
LASTLY, WE'VE SCHEDULED TRAINING
WEBINARS ABOUT SPECIFIC FUNDING
OPPORTUNITIES, FOR EXAMPLE,
F-99, K-99, DIVERSITY SUP
ELEMENTS AND THESE HAVE BEEN LED
BY OFFICE OF HEALTH EQUITY IN
COLLABORATION WITH THE DIVISION
OF EXTRAMURAL RESEARCH AND THE
DIVISION OF EXTRAMURAL ACTIVITY.
AND MORE IMPLEMENTATION UPDATES.
THE NEW TYPE 1 AND RENEWAL TYPE
2, T32 APPLICATIONS ARE NOW
GOING TO BE CLUSTERED SEPARATELY
FOR PEER REVIEW. WE'VE NOTED IN
THE PAST AND DISCUSSED THIS AT A
PRIOR COUNCIL MEETING IT WAS
VERY DIFFICULT FOR A NEW P32
TRAINING PROGRAM TO COMPETE WITH
A VERY WELL ESTABLISHED PROGRAM,
WHICH TENDED TO DO BETTER
BECAUSE IT WAS MORE OF A TRACK
RECORD.
SO NOW THEY WILL BE CLUSTERED
SEPARATELY WITH THE HOPE WE WILL
BE ABLE TO BRING IN NEW GROUPS
OF PEOPLE BECAUSE WE CAN ONLY
FUND A LIMITED NUMBER OF T32
APPLICATIONS. COMPETING T-32
APPLICATIONS WILL REQUIRE THE
PROGRAM OFFICIAL INPUT ON
DIVERSITY RECRUITMENT AND
RETENTION PLANS DURING THE
FUNDING PLAN DEVELOPMENT. WE
ARE SERIOUS ABOUT THIS. IF
THERE ISN'T EITHER A DIVERSITY
TRACK RECORD OR A SIGNIFICANT
PLAN FOR DIVERSITY RECRUITMENT,
YOU WILL BE HEARING FROM US.
NICHD DRAFTED LANGUAGE TO
ENCOMPASS INDIVIDUAL AND
INSTITUTIONAL DIVERSITY FOR BOTH
OUR T32S AND OUR K12'S. YOU'LL
BE HEARING MORE ABOUT THE
STRATEGY PLAN LATER IN THIS
MEETING.
WE ARE ADDING NOW A MAJOR
CROSS-CUTTING THEME IN TRAINING
TO NICHD 2025 STRATEGIC PLAN.
OKAY. SOME CONGRATULATIONS, I
SEE DEB HANKINS IS BACK THERE.
WANT TO RAISE YOUR HAND?
CONGRATULATIONS, DEB. IF YOU
ARE FUNDED BY DBCAB, DEVELOPMENT
BIOLOGY BRANCH, YOU KNOW HER AS
A PROGRAM OFFICER AND SHE
RECENTLY RECEIVED HUGE HONOR,
RECOGNIZED BY THE 13TH
INTERNATIONAL CONFERENCE ON
NEURAL TUBE DEFECT FOR HER
UNFAILING ENTHUSIASM, HER
MENTORSHIP, GUIDANCE AND
CHAMPONING OF RESEARCH INTO
CAUSES AND PREVENTION OF
STRUCTURAL BIRTH DEFECTS.
CONGRATULATIONS, DEB.
[APPLAUSE]
>> AND JAMES COULOMBE, IS NOT
WITH US TODAY, HE RETIRED AS OF
AUGUST 31ST, CHIEF OF
DEVELOPMENTAL ANOMALY BRANCH.
HE WAS THE CHIEF SINCE 2018.
AND HE JOINED NICHD IN 2006 AND
ALSO LED THE GABRIELLA MILLER,
HIS FIRST RESEARCH PROGRAM SINCE
2017 AND MAHUA MUKHOPADHYAY WILL
BE ACTING BRANCH CHIEF. ARE YOU
HERE? CAN YOU RAISE YOUR HAND?
THERE YOU ARE, BEHIND DAN.
HELLO, MAHUA, THANK YOU FOR
BEING WILLING TO SERVE AS ACTING
BRANCH CHIEF. AND YOU'LL BE
HEARING MORE, AS I SAID, ABOUT
THE DIVISION OF INTERMURAL
RESEARCH, HENRY LEVIN HAS BEEN
FORMALLY SELECTED AS NICHD
DEPUTY SCIENTIFIC DIRECTOR, HE
IS SENIOR INVESTIGATOR AND THE
HEAD OF THE SECTION OF
EUKARYOTIC TRANS POSABLE
ELEMENT, CHAIR OF THE DIR TENURE
AND PROMOTION COMMITTEE AND
PROGRAM DIRECTOR OF EARLY CAREER
AWARD AND CAREER AWARD FOR STAFF
SCIENTIFIC AND STAFF CLINICIANS
AND RECEIVED THE NIH OUTSTANDING
MENTOR AWARD. SO WE ARE VERY
HAPPY TO HAVE THAT POSITION
FILLED AND WE SEND
CONGRATULATIONS TO HENRY AND
PERHAPS CHRIS WILL TELL US A
LITTLE MORE. AS USUAL, WE ARE
HIRING, WE HAVE NATIONAL
SEARCHES GOING ON FOR DB CAB
BRANCH CHIEF TO REPLACE JAMES
AND THE FERTILITY AND
INFERTILITY BRANCH CHIEF AND YOU
CAN CONTACT ROHAN, IF YOU HAVE
SUGGESTIONS OR ARE INTERESTED OR
KNOW SOMEONE THAT WE SHOULD
CONTACT. IN ADDITION, THE
INTRAMURAL LABORATORIES, WE'LL
HEAR MORE ABOUT SHORTLY, ARE
HIRING POST DOCKTORAL FELLOWS AD
OTHER TRAINEES AND REALLY A VERY
VIBRANT PLACE TO WORK. LAST
THING I WANTED TO MENTION IS OUR
NEW WOMEN'S HEALTH RESEARCH FACT
SHEET.
YOU CAN USE YOUR CAMERA TO
CAPTURE THE QR CODE.
I TRIED IT MYSELF, IT DOES WORK.
THESE ARE TERRIFIC FACT SHEETS
THAT HAVE BEEN CREATED BY OUR
OFFICE OF COMMUNICATIONS AND
THEY ARE DESIGNED TO BE ONE
PAGERS THAT GIVE A LITTLE
INTRODUCTION AND THEN A LITTLE
BIT OF NICHD HIGHLIGHTS. SO WE
USE THEM FOR EXAMPLE, WHEN WE GO
TO DO A CONGRESSIONAL BRIEFING
OR IF WE ARE AT SOME SORT OF
ADVOCACY MEETING, THEY ARE JUST
THE RIGHT LENGTH.
THEY ARE COLORFUL, ATTRACTIVE
AND THEY HAVE NICHD RESEARCH TO
HIGHLIGHT SO THEY ARE PUBLICLY
AVAILABLE AND FEEL FREE TO USE
THEM. SO WITH THAT, I'M GOING
TO THANK YOU FOR YOUR ATTENTION
AND I'M HAPPY TO ANSWER
QUESTIONS.
[APPLAUSE]
>> THANK YOU.
>> WE HAVE ABOUT 25 MINUTES.
PATRICIA, FOR QUESTIONS, OR 20
MINUTES.
HERE, OKAY. GREAT.
T
TRICIA DORN, THANK YOU FOR
HEARING WONDERFUL THINGS THAT
ARE GOING ON. BUT REALLY STRUCK
ME AS AN AVID SWIMMER AND LIFE
GUARD IN A PREVIOUS LIFE FORM
WAS THE ADDRESSING THE DROWNING
AND I'M WONDERING PEOPLE MAY
KNOW OR BE AWARE COUNTRY OF
ICELAND, THEY HAVE PROGRAMS
THERE FOR REQUIRED SWIMMING
LESSONS FOR KIDS. I KNOW IT IS
A SMALL COUNTRY AND I UNDERSTAND
THAT, BUT THEY DO HAVE PROGRAMS
IN PLACE FOR A LONG TIME, IT IS
MANDATORY THAT KIDS LEARN HOW TO
SWIM, JUST THOUGHT I'D BRING
THAT UP, IT CAUGHT MY ATTENTION.
>> THANK YOU FOR SHARING THAT.
IT REALLY IS A SIGNIFICANT
PROBLEM WITH SIGNIFICANT
DISPARITIES IN DIFFERENT
COMMUNITIES.
OKAY. DON'T BE SHY. WAS IT SO
CRYSTAL CLEAR THAT -- YES,
GENAVIVE.
>> SORRY, THANKS FOR THAT
WONDERFUL PRESENTATION.
I WAS WONDERING IF YOU COULD
PROVIDE A LITTLE MORE DETAIL
ABOUT THE LANGUAGE THAT YOU
DISCUSSED AROUND DIVERSITY WITH
JUST HOW SOME STATES HAVE
POLICIES SAYING THAT YOU CANNOT
LOOK AT RACE OR AGENDA OR AS
PART OF THE RECRUITMENT.
>> YEAH. SO WE FEEL THAT IT IS
IMPORTANT TO DIVERSIFY THE
WORKFORCE AND A LOT OF THAT HAS
TO DO WITH OUTREACH. SO
HISTORICALLY, WE HAVE NOT DONE
AS MUCH OUTREACH TO HISTORICAL
BLACK COMMUNITIES AND COLLEGES
AND UNIVERSITIES AS WE SHOULD
HAVE. I THINK PART OF THIS IS
MAKING OPPORTUNITY AWARE, IT'S
ALSO, I REALIZE THAT FOR
ADMISSION TO UNIVERSITIES, THAT
IS ONE THING. HERE NIH HAS
TAKEN THE APPROACH THAT WE
DEFINITELY DO NEED TO DIVERSIFY
THE WORKFORCE AND I THINK A LOT
OF IT IS MAKING PEOPLE AWARE OF
THE OPPORTUNITIES. AND NOT WE
DON'T CONSIDER RACE, FOR
EXAMPLE, IN SELECTING WHO FOR
THE RACE OF THE PRINCIPAL
INVESTIGATOR IN TERMS OF WHO IS
GOING TO GET FUNDED. IT IS MORE
WE WANT TO MAKE OPPORTUNITIES
AVAILABLE TO ALL AND MAKE SURE
THAT WE'RE NOT EXCLUDING ANYONE.
>> THANK YOU.
>> YES, CYNTHIA.
>> I ACKNOWLEDGE THAT THIS IS
NAIVE QUESTION, I'M GOING TO ASK
IT ANYWAY.
HOW DO YOU AND THE CONTEXT OF
THE POTENTIAL CHANGE IN THE
POLITICAL CLIMATE, HOW DO YOU
WORK THROUGH SOME OF THE FUNDING
ANNOUNCEMENTS THAT ARE REALLY
RELATED TO THE PRIORITIES OF
POTENTIALLY THE FORMER POLITICAL
GROUP?
>> SO IF I HEARD YOU CORRECTLY,
YOU WERE SAYING HOW DO WE WORK
THROUGH FUNDING ANNOUNCEMENTS IN
LIGHT OF POLARIZED POLITICAL
CLIMATE? SO WE RECOGNIZE THAT
WE HAVE SOME SIGNIFICANT HEALTH
ISSUES IN THIS COUNTRY THAT WE
NEED TO ADDRESS. AT THE SAME
TIME, WE RECOGNIZE THAT SCIENCE
HAS BECOME POLARIZED, AS WELL AS
POLITICS. SO WE WANT TO FUND
CERTAIN ISSUES.
SO FOR EXAMPLE, THERE HAVE BEEN
SIGNIFICANT DECISIONS HAVE THAT
HAVE AFFECTED WOMEN'S HEALTH.
HOW DO WE ADDRESS THAT? WE WILL
CONTINUE TO FUND THAT RESEARCH,
BUT THE FUNDING ANNOUNCEMENTS
ARE WRITTEN IN A WAY THAT ARE,
THEY ARE NOT DIRECTLY CALLING
ATTENTION TO SPECIFIC TOPICS.
THAT IS WHY WE ALWAYS RECOMMEND
THAT IF OUR INVESTIGATORS HAVE
ANY QUESTIONS, THEY SHOULD SPEAK
WITH EITHER THE BRANCH CHIEF OR
PROGRAM OFFICIALS TO UNDERSTAND
SOME OF THE THINGS THAT WE'RE
INTERESTED IN. YES.
>> I GUESS MORE SPECIFICALLY,
SOME OF THE INFLUX OF MONEY
COMING TOWARD WOMEN'S HEALTH
RESEARCH, IN TRYING TO ADVISE
FOLKS WHO ARE POTENTIALLY
APPLYING FOR SOME OF THOSE, WILL
THEY, IS THERE CONFIDENCE THEY
WILL EXIST BEYOND THAT PERIOD IF
CHANGE IN ADMINISTRATION?
>> SO, I'M HAVING A HARD TIME
HEARING YOU, WITH MONEY COMING
IN TO WOMEN'S HEALTH RESEARCH,
WHAT WAS THE SECOND PART OF WHAT
YOU --
>> IS THERE CONFIDENCE IN
CONTINUING THAT FUNDING
ANNOUNCEMENT OR THAT TYPE OF
RESEARCH IF THERE IS A CHANGE IN
THE POLITICAL CLIMATE?
>> YEAH, SO WE KNOW THAT THERE
WILL BE A CHANGE IN THE
ADMINISTRATION. WE ALSO KNOW
THAT THE WOMEN'S HEALTH RESEARCH
INITIATIVE HAS BEEN PRIMARILY
THE INITIATIVE OF PRESIDENT
BIDEN AND DR. BIDEN AND SHE HAS
BEEN CHAMPIONING THAT AND
TRAVELED QUITE A BIT AROUND THE
COUNTRY UNTIL PRESIDENT BIDEN
DECIDED NOT TO RUN AGAIN. WE'VE
HAD A LOT OF DISCUSSIONS HON
EFTLY WITH ORWH ABOUT WHAT
EXACTLY DOES WOMEN'S HEALTH
RESEARCH ENCOMPASS BECAUSE
PREGNANCY IS SIGNIFICANT HEALTH
EVENT IN THE LIVES OF PEOPLE
BORN FEMALE AND THERE ARE MANY
THINGS, YOU KNOW BETTER THAN I
THAT PREGNANCY CAN TELL YOU
ABOUT A PERSON WHO IS BORN
FEMALE'S LATER HEALTH, AS WELL
AS PREGNANCY BEING A STRESS
TEST. SO WE WERE UNABLE, THE
WHITE HOUSE REALLY DID NOT WANT
TO INCLUDE PREGNANCY AS PART OF
THE WOMEN'S HEALTH RESEARCH
INITIATIVE, THEY ARE MORE
FOCUSED ON DISEASES THAT AFFECT
PEOPLE BORN FEMALE MAR THAN
PEOPLE BORN MALE AUTOIMMUNE
DISEASES, FOR EXAMPLE,
CARDIOVASCULAR DISEASE,
ETCETERA, WHAT THEY DID, THEY
MADE MATERNAL HEALTH AN ISSUE
FOR VICE PRESIDENT HARRIS. SO
WE HAVE BEEN WORKING MORE WITH
HER OFFICE ABOUT AND IT IS NOT
JUST THE NIH, IT IS FEDERAL
WIDE, IT IS A FEDERAL-WIDE
INITIATIVE. IT IS ALL A LITTLE
BIT UP IN THE AIR EXACTLY WHAT
IS GOING TO HAPPEN BECAUSE NOW
THAT PRESIDENT BIDEN IS NOT
RUNNING AGAIN, THE FUTURE OF THE
WOMEN'S HEALTH RESEARCH
INITIATIVE IS SOMEWHAT UNKNOWN.
ON THE OTHER HAND, REPRODUCTIVE
HEALTH HAS BECOME A FOCUS AREA
FOR THE ELECTION. SO WE'RE
FOLLOWING ALL OF THIS CLOSELY.
IT DOES NOT CHANGE WHAT WE DO.
OUR MISSION AND VISION STATEMENT
BOTH INCLUDE SIGNIFICANT
COMMENTS ON REPRODUCTIVE HEALTH
FOR BOTH MEN AND WOMEN. AND IN
OUR VISION STATEMENT IS HEALTHY
PREGNANCY, HEALTHY CHILDREN,
HEALTHY AND OPTIMAL LIVES.
SO WE ARE GOING TO CONTINUE IF
WE CONTINUE TO HAVE FUNDING TO
FOCUS ON WOMEN'S HEALTH, THAT IS
WHY I PUT BELOW THE BELT, IT IS
EASIEST WAY TO DESCRIBE IT. WE
ARE FOCUSED MORE ON WOMEN'S
HEALTH BELOW THE BELT AND THAT
INCLUDES DEVELOPMENT OF
REPRODUCTIVE ORGANS, IT INCLUDES
PUBERTY, EARLY MENOPAUSE.
I'M AUCH ASKED WHERE DO WE FIT
IN TERMS OF MENOPAUSE, MID-LIFE
HEALTH IS A MAJOR PART OF THE
WOMEN'S HEALTH RESEARCH
INITIATIVE AND WE FUND A
CONSIDERABLE AMOUNT OF RESEARCH
ON EARLY MENOPAUSE, WHEREAS MOST
ME
MENOPAUSE RESEARCH IS DONE
NATIONAL INSTITUTE OF AGING.
DID THAT ANSWER YOUR QUESTION?
>> SUPER HELPFUL, TO SUMMARIZE,
THE FOCUS AND MISSION AND VISION
WILL REMAIN THE SAME, BUT THE
FUNDING STREAM MIGHT BE
DIFFERENT?
>> YEAH. THE MISSION AND VISION
ARE GOING TO STAY THE SAME,
ESPECIALLY WITH OUR REFRESH
STRATEGIC PLAN. WE ARE
FREQUENTLY BRIEFING MEMBERS OF
CONGRESS AND/OR THEIR STAFF TO
MAKE IT CLEAR WHERE WE FIT IN
THE NIH ECOSPHERE, WE DO
COLLABORATE WITH BOTH THE OFFICE
OF RESEARCH ON WOMEN'S HEALTH
AND OTHER INSTITUTES AND
CENTERS. BUT, WE NEED TO MAKE
IT CLEAR THAT WE ARE THE LEAD
INSTITUTE FOR IMPROVE, AS WELL
AS MANY, MANY ASPECTS OF
REPRODUCTIVE HEALTH, THAT
INCLUDES CONTRACEPTION, ANYTHING
YOU CAN IMAGINE THAT RELATES TO
REPRODUCTIVE HEALTH.
YES, DAVID.
SORRY YOU HAVE TO
TURN AROUND.
>> SORRY, I THINK I HAVE IT NOW.
THANK DIANA.
YOU MENTIONED PROPOSAL TO
CONSOLIDATE FROM 27 TO 15, CAN
YOU PROVIDE INSIGHT INTO HOW THE
DECISION MIGHT BE MADE ABOUT THE
JOINING TOGETHER OF CERTAIN
INSTITUTES AND ALSO DO YOU THINK
THERE MIGHT BE AN OPPORTUNITY TO
BRING TOGETHER AGE-APPROPRIATE
RESEARCH FOR WOMEN AND CHILDREN
RESEARCH INTO NEW NIH AGENCY
CONFIGURATION?
>> SO, I MIGHT ASK LAURA TO
COMMENT ON THIS. THE WAY THE
INSTITUTES WERE GROUPED
TOGETHER, WE WERE NOT THE ONLY
INSTITUTE THAT WAS GROUPED WITH
ANOTHER INSTITUTE. THERE WERE
SOME THAT WERE GROUPED WITH TWO
OR THREE OTHER INSTITUTES AND
CERTAINLY NIH WAS NEVER ASKED
ABOUT LOGICALLY WHICH INSTITUTE,
YOU HAD OVERALL GOAL OF REDUCING
NUMBER OF INSTITUTES, WHAT WOULD
MAKE THE MOST SCIENTIFIC OR
MEDICAL SENSE, WE WERE NOT ASKED
AND WE DON'T HAVE A LOT OF
KNOWLEDGE ABOUT HOW THAT WAS
DONE. THERE WAS THIS REQUEST
FOR INFORMATION AND I KNOW THAT
A NUMBER OF PEDIATRIC CHAIRS,
FOR EXAMPLE, CONTACTED ME AND
TOLD ME WHAT THEY WERE GOING TO
SAY TO THE ENERGY AND COMMERCE
COMMITTEE TO TALK ABOUT THE FACT
THAT, YOU KNOW, IT WOULD BE MORE
LOGICAL TO DO IT ONE WAY OR
ANOTHER AND DON'T FORGET ABOUT
THE CHILDREN. LAURA, I HATE TO
PUT YOU ON THE SPOT, BUT THERE
ARE MICROPHONES OVER HERE.
LAURA BERKSON DIRECTOR OF OFFICE
OF LEGAL -- PUBLIC POLICY AND
ETHICS.
>> I WOULD JUST SAY THAT WOMEN'S
HEALTH IS COMPLETELY LEFT OUT,
WOMEN'S HEALTH HAD NO --
>> SO WAS CHILDREN.
>> CHILDREN ARE NOT MENTIONED.
>> YEAH, SO -- OKAY. YES, THAT
IS CORRECT. I THINK THE OFFICE
OF RESEARCH ON WOMEN'S HEALTH,
OUR UNDERSTANDING THIS STILL
EXISTS SEPARATELY AND OFFICE OF
DIRECTOR.
>> NOT SURE YOUR MICROPHONE IS
ON.
>> ONE, TWO, HEY, HEY.
>> CAN YOU HEAR ME?
>> THAT IS BETTER.
>> SO THERE WAS NO SPECIFIC
MENTION OF WOMEN OR CHILDREN IN
THE REOERRGANIZATION, THAT BEIN
SAID, RESEARCH ON WOMEN'S HEALTH
IS IN OFFICE OF DIRECTOR, SO
THERE IS I THINK AN EXPECTATION
THAT WOULD REMAIN IN THE OFFICE
OF THE DIRECTOR. THERE ARE A
LOT OF UNKNOWN, HOPEFULLY
REQUEST FOR INFORMATION THE
COMMITTEE GETS ADDITIONAL
INFORMATION FOR THEM TO
CONSIDER. AGAIN, AS DIANA
MENTIONED, THERE IS PROPOSAL AND
WOULD HAVE TO BE APPROVED BY
HOUSE, SENATE AND THE PRESIDENT
BEFORE IT BECOMES ACTIVE.
I SUSPECT IF THAT WERE TO
HAPPEN, THERE WOULD BE QUITE A
BIT BACK AND FORTH BETWEEN
CHAMBERS.
>> -- FOR THE PROPOSED CHANGES?
>> SO THERE HAS BEEN A LOT OF
DISCUSSION ON CAPITOL HILL ABOUT
MAKING SOME CHANGES TO BOTH THE
STRUCTURE OF NIH AND PROVIDING
ADDITIONAL OVERSIGHT. I THINK
THERE ARE MANY IN CONGRESS THAT
FEEL THERE NEED TO BE SOME
ADDITIONAL OVERSIGHT OF NIH.
THEY HAVE SEEN THAT DURING SOME
HEARINGS, DURING COVID AND
DR. DR. FDR
DR. -- THIS IS ONE MORE STEP
FOR ADDITIONAL OVERSIGHT.
>> DOESN'T NIH HAVE TO BE
REAUTHORIZED EVERY SO MANY
YEARS? IS THIS PART OF THE
REAUTHORIZATION?
>> SO IN A PERFECT WORLD, YES,
NIH SHOULD BE REAUTHORIZED,
USUALLY EVERY FIVE-ISH YEARS.
IT WAS LAST REAUTHORIZED IN 2016
THROUGH THE ACT, SO THAT
OBSERVATION IS EXPIRED. SO WE
ARE DUE FOR REAUTHORIZATION.
YES.
>> THANK YOU. DOES ANYBODY ELSE
HAVE ANY QUESTIONS FOR LAURA
WHILE SHE'S STANDING UP THERE?
I SAID OFFICE OF LEGAL, I MEANT
OFFICE OF LEGISLATION. YEAH.
>> SO [INAUDIBLE] --
>> MARCELLE CEDARS.
>> TIMEFRAME FOR THIS, IS THIS
THE KIND OF THING THAT IS, I
MEAN, HOPEFULLY, YEAH, I DON'T
GET THE SENSE THEY MOVE A LOT
FASTER THAN UC DOES ABOUT
ANYTHING SO I'M HOPEFUL THAT
THIS POTENTIALLY MIGHT BE IN THE
NEXT TERM WHEN WE MIGHT BE ABLE
TO FLIP SOME OF THE POWER
STRUCTURE IN THE HOUSE AND
SENATE.
>> SO THIS COULD COME TO
FRUITION IN A COUPLE OF
DIFFERENT WAYS, SO THE ORIGINAL
PROPOSAL BY ENERGY AND COMMERCE
COMMITTEE, WHICH WE CALL
AUTHORIZING COMMITTEE. SO THEY
PASS LAWS THAT TELL NIH WHAT WE
CAN AND CANNOT DO.
THEY ARE THE ONES THAT PUT OUT
THE REQUEST FOR INFORMATION AND
SO I THINK THEY ARE TRYING TO
HAVE A THOUGHTFUL PROCESS AND I
EXPECT THAT WOULD BE IN THE
CONFERENCE. A FEW WEEKS AFTER
THAT WAS RELEASED, OUR
APPROPRIATIONS COMMITTEE OF THE
APPROPRIATIONS COMMITTEE AT NIH
HOW MUCH MONEY WE HAVE TO DO
THINGS. THEY INCLUDED WHAT WAS
IN THE ENERGY AND COMMERCE
PROPOSAL IN THEIR DRAFT
APPROPRIATIONS BILL. SO IT IS
POSSIBLE THAT THAT COULD BE
INCLUDED IN THE APPROPRIATIONS
BILL WHICH COULD PASS ON A
QUICKER TIMELINE THAN THE FISCAL
YEAR IS SEPTEMBER 30,
THEORETICALLY SUPPOSED TO PASS
APPROPRIATIONS BILL BY THEN, I
THINK IT IS UNLIKELY -- COUNCIL
FOR A WHILE, YOU HAVE PROBABLY
SEEN CONTINUING RESOLUTION THAT
JUST CONTINUES FUNDING THE
GOVERNMENT, THAT LEVEL FOR A
WHILE SINCE THIS IS AN ELECTION
YEAR, IT IS HIGHLY LIKELY.
AGAIN, BOTH THE HOUSE AND THE
SENATE WOULD HAVE TO AGREE TO
THAT AND RIGHT NOW, I WILL
MENTION, HOUSE BILL INCLUDES
STRUCTURAL REORGANIZATION AND
THE SENATE BILL DOES NOT. SO I
WOULD BE SURPRISED IF THEY WERE
ABLE TO WORK THROUGH ALL THE
ISSUES THIS YEAR. BUT JUST
LOOKING AT SENATOR CASSIDY'S
WHITE PAPER, ENERGY AND COMMERCE
REPORT, THERE IS ALSO A NEW
VERSION OF THE CURES ACT THAT IS
BEING WORKED ON, THERE IS A LOT
OF ACTIVITY THAT IS RELATED TO
OVERSIGHT AND/OR RESTRUCTURING
OF NIH. SO WE DON'T KNOW WHAT
IS GOING TO HAPPEN, BUT IT IS
CERTAINLY A TOPIC FOR
DISCUSSION. DESPITE THAT, WE DO
OUR JOB EVERYDAY AND THAT IS, I
REMEMBER, TONY FAUCI WOULD TELL
DIRECTORS FOCUS, YOU HAVE A JOB
TO DO AND WE WILL DO OUR JOB
EVERYDAY, WE WILL GET THAT MONEY
OUT TO YOU.
TO BE ABLE TO MERGE INSTITUTES
AND CONTINUE TO FUND RESEARCH
LIKE WITH A VERY SHORT TIMELINE,
I THINK WOULD BE EXTREMELY
DIFFICULT.
OKAY. THANK YOU, LAURA. MY
PHONE-A-FRIEND.
OTHER QUESTIONS?
OKAY, WE'RE --
>> I HAD ONE QUESTION.
>> DID SOMEBODY SAY --
>> YEAH, THE STEM RADX FUNDING
PRIZES FOR ENDOMETRIOSIS. THE
SLIDE NOTED MARCH 2026 FOR
PRIZES. THAT IS FOR PHASE I --
>> THAT IS THE END, WHEN WINNERS
ARE ANNOUNCED.
>> 3 MILLION PRIZE HAVE
ALREADY --
>> TOTAL OF 3 MILLION DOLLARS.
IT IS IN STAGES, SO LET'S SAY
100 APPLICATIONS AND THE NEXT
PHASE WILL BE SELECTED AND THERE
ARE SMALL PRIZES AT THE
BEGINNING THAT THEN LEAD UP TO
MUCH LARGER PRIZE. THE TOTAL
BUDGET AMOUNT THAT WE'VE
COMMITTED ARE $3 MILLION.
>> OKAY. THANK YOU. THE DOD
DDRMP HAS IN THE SENATE LANGUAGE
ENDOMETRIOSIS AND MENOPAUSE AND
MATERNAL MENTAL HEALTH AS TOPIC
AREAS THAT BE FUNDED IN FY 2025,
WE LOOK FORWARD TO COLLABORATING
WITH NICHD, WHAT WE'RE FUNDING
TO MAKE SURE WE'RE FILLING THE
RIGHT GAPS.
YEAH, THERE ARE GREAT
OPPORTUNITIES FOR COLLABORATION
SO THANK YOU. AND I WANT TO
ACKNOWLEDGE OUR STAFF FOR ALL
THE WORK THAT THEY ARE DOING IN
TERMS OF BRIEFING MEMBERS OF
CONGRESS AND THEIR STAFF. I
THINK THAT BEFORE I CAME TO NIH,
I NEVER REALIZED HOW IMPORTANT
THAT IS AND IT IS SO GRATIFYING
TO SEE THE IMPROVED LANGUAGE,
FOR EXAMPLE, OR THE INCLUDE
LANGUAGE WHICH WAS OUR DOWN
SYNDROME INITIATIVE AND TO SEE
HOW WORK THAT IS DONE BY OUR
STAFF TR TRANSLATES TO
APPROPRIATIONS LANGUAGE.
IT MAKES A HUGE DIFFERENCE. SO
THAT, IN ADDITION, TO YOUR
INTERACTION WITH YOUR OWN
REPRESENTATIVES IS VERY, VERY
IMPORTANT.
Y
YES.
>> THANK YOU, THANK YOU FOR YOUR
PRESENTATION.
MY QUESTION RELATES TO TRAINING
AND MAYBE ALSO OUTREACH. THIS
RELATE TO MAYBE IMPORTANCE OF
EARLIER, RIGHT? UNDERGRADUATE,
EVEN HIGH SCHOOL OR K-12, ANY
PLANS FOR EXPANDING TRAINING
PROGRAMS REACH OUT EARLY TO
FUTURE -- NOT JUST FOR
EDUCATION.
>> YEAH. I TOTALLY AGREE AND
PERHAPS CHRIS IS GOING TO
INCLUDE THE SUMMER INTERN OR
YOUNGER TRAINEES BECAUSE IT
MAKES A HUGE DIFFERENCE BEING
EXPOSED AND REALLY THAT IS A
WONDERFUL THING ABOUT THE
INTRAMURAL PROGRAM, IS WE BRING
HIGH SCHOOL STUDENTS, AS WELL AS
COLLEGE STUDENTS DURING THE
SUMMER TO HAVE THEM EXPOSED AND
MANY OF THEM DO COME BACK FOR
THE POST-BACCALAUREATE PROGRAM,
THEY ARE COLLEGE GRADUATES AND
NOW THINKING ABOUT GRADUATE
SCHOOL OR MEDICAL SCHOOL. THEY
ARE SPENDING ONE TO TWO YEARS IN
A LABORATORY HERE ON CAMPUS. I
TOTALLY AGREE, YOU NEED TO BE
EXPOSED AS EARLY AS POSSIBLE.
OKAY. WE'RE RIGHT ON TIME. AND
SO WE ARE NOT QUITE READY, THERE
SEEMS TO BE A GAP HERE, WE'LL
TALK ABOUT THE FIELD TRIP ON THE
SCRIPT, BUT WE'RE NOT READY TO
RECONVENE YET. THERE IS
SOMETHING MISSING ON THE SCRIPT.
>> ALL RIGHT. SO -- WE'RE GOING
TO BREAK NOW UNTIL 12:45.
>> WE'RE BREAKING UNTIL 12:45?
OKAY.
THIS IS A FIELD TRIP.
>> SO FOR THOSE OF YOU WHO ARE
COUNCIL MEMBERS, WE ARE OFFERING
AN ACTIVITY DURING THIS LENGTHY
BREAK. SO I DON'T KNOW, DO YOU
WANT TO GO AHEAD AND INTRODUCE
THAT?
>> YES, THANK YOU. FOR SOME
REASON I THOUGHT THE FIELD TRIP
WAS LATER IN THE DAY.
WE WANT YOU TO GET YOUR EXERCISE
AND WAKE UP. AS YOU KNOW,
SEPTEMBER COUNCIL MEETING
TYPICALLY FOCUSES ON NICHD
INTRAMURAL PROGRAM, THE NICHD
INTLAMURAL PROGRAM CONDUCT
RESEARCH IN MANY AREAS INCLUDING
BASIC CLINICAL AND
POPULATION-BASED RESEARCH. ONE
AREA OF EXCELLENCE IS THE STUDY
OF GENETIC DISEASE AND THIS
AFTERNOON YOU'LL HEAR FROM
DR. CARLOS, ONE OF OUR NEW
TENURE TRACK DIVISION OF
INTRAMURAL INVESTIGATORS AND HE
STUDIES INHERITED DISORDERS THAT
AFFECT BONE DEVELOPMENT. WE'RE
GOING TO HAVE A VISIT FROM A
FAMILY WHO HAVE A CHILD THAT
PARTICIPATIONS IN THE STUDY THAT
DR. HERRERA DIRECTS, AMONG MANY
OTHER AREAS OF RESEARCH IS
PEDIATRIC AND ADOLESCENT
GYNECOLOGY, PROGRAM LED BY
DR. VERONICA GOMEZ LOBO, WE WILL
GO ON BREAK TO ALLOW EVERYONE TO
GET LUNCH.
I WAS CONFUSED, IT IS EARLY FOR
LUNCH.
DURING THE BREAK, THE DOCTOR
WILL OFFER COUNCIL MEMBERS BRIEF
TOUR OF NIH CLINICAL CENTER AND
SUM OF INTRAMURAL RESEARCH
LABORATORY.
IF YOU DON'T KNOW ABOUT THE
CLINICAL CENTER, THE TAG LINE IS
AMERICA'S RESEARCH HOSPITAL. IT
IS A FULLY FUNCTIONING HOSPITAL.
YOU CAN ONLY COME INTO THE
HOSPITAL IF YOU ARE ON A STUDY
PROTOCOL. THEY DO A NUMBER OF
FIRST IN HUMAN STUDY THERE.
FOR EXAMPLES SOME EARLIEST
IMMUNOTHERAPY STUDIES FOR CANCER
WERE PERFORMED THERE AND WE ARE
RUNNING QUITE A NUMBER OF
CLINICAL PROTOCOL. WE ARE ALSO
VERY INTERESTED IN INCREASING
THE NUMBER AND PORTION OF
PATIENTS BEING STUDIED AT THE
CLINICAL CENTER WHO ARE CHILDREN
AND IN PARTICULAR YOUNGER
CHILDREN AS WE MOVE TOWARD GENE
THERAPY AND IDENTIFYING NEW
GENOMIC VARIANTS.
WE WOULD LIKE TO HAVE THE
OPPORTUNITY TO TREAT YOUNG
CHILDREN. SO DR. GOMEZ LOBO
WILL BE YOUR TOUR GUIDELINE AND
WE'LL RECONVENE AT 12:45. THERE
IS A CAFETERIA DIRECTLY ACROSS
THE WAY AND RESTROOM FACILITIES
ARE TO THE LEFT OF THE CAFETERIA
IN THE BACK. SO WITH THAT,
THERE IS THE DOCTOR, YOU SHOULD
HAVE AN UMBRELLA OR SOMETHING.
OKAY. THANK YOU ALL AND WE WILL
RECONVENE AT 12:45.
STAY ON THROUGH ANOTHER
PRESIDENTIAL ADMINISTRATION AND
THE ANSWER IS YES, I SAID THAT
THE INCOMING PRESIDENT CAN
REQUEST A LETTER OF RESIGNATION,
AND SO THAT HAPPENED SEVERAL
TIMES FOR DR. COLLINS WHO SERVED
THROUGH MULTIPLE DEMONSTRATIONS
SO IT DOES NOT MEAN NECESSARILY
WHAT HAPPENED THAT
DR. BERTAGNOLLI WILL BE THE
DIRECTOR IT WOULD BE AT THE
BEHEST OF THE NEW PRESIDENT
WHETHER HE OR SHE ACCEPTS THE
LETTER OF RESIGNATION, SO I HOPE
THAT'S CLEAR THAT SHE CAN STAY
ON.
OKAY, AND WITH THAT, WE ARE
GOING TO TURN THE MEETING OVER,
THE SEPTEMBER MEETING FOR THOSE
WHO ARE NEW TO THE ADVISORY
COUNCIL, GIVEN AN HIGHLIGHT OF
DIVISION OF EPITHELIAL RAMURAL
RESEARCH, SO IT IS MY PLEASURE
NOW TO INTRODUCE OUR SCIENTIFIC
DIRECTOR, THE DIRECTOR OF THE
INTRAMURAL RESEARCH PROGRAM
DR. CHRIS Mc BAIN.
>> THANK YOU VERY MUCH.
GOOD AFTERNOON EVERYBODY, I'M
GLAD YOU ALL MADE IT BACK FROM
THE CLINICAL CENTER AND I WANT
TO THANK VERONICA FOR HOST
THAGOREAN AND ACTING AS OUR TOUR
GUIDE SO I HOPE YOU WOULD AGREE
IT'S A PRETTY SPECIAL
ENVIRONMENT THERE AND I HOPE YOU
ENJOYED THAT TOUR.
I'M PUSHING BUT OPEN MEETINGS
AND NOTHING'S HAPPENING, SO,
OKAY, HERE WE GO, FOR THOSE WHO
DON'T KNOW ME, I'M CHRIS
Mc BAIN I'M THE SPECIFIC IT
SCIENTIFIC DIRECTOR FOR THE
INTRAMURAL PROGRAM, I'VE BEEN
WITH THE NIH FOR OVER 30 YEARS
AND STARTED HERE AS A YOUNG
TENURED TRACK INVESTIGATOR,
BECAME LAB CHIEF AND PROGRAM
CHIEF AND IN THE LAST YEAR AND A
HALF, I'VE BECOME THE SCIENTIFIC
DIRECTOR.
WHAT I WILL TALK TO YOU ABOUT
TODAY ARE REALLY CORE MAIN
TOPICS, SO REALLY THIS
IS--REFLECTS SORT OF LIKE THE
FIRST 18 MONTHS IF YOU LIKE OF
MY TENURE AS A SCIENTIFIC
DIRECTOR AND REALLY TO GIVE SMU
HIGHLIGHTS OF WHAT WE'VE BEEN UP
TO OVER THAT TIME AND SPEND MOST
OF THE TIME TALKING ABOUT OUR
EDUCATION UPDATES AND FUNDING
OPPORTUNITIES THAT WE
ESTABLISHED AND HAVE BEEN
INFORMED WITH BUT ALSO TO GIVE
YOU A GENERAL OVERVIEW OF THE
INTRAMURAL PROGRAM AND SOME OF
OUR BUDGET AND PERSONNEL UPDATES
FOR THOSE THAT ARE NOT FAMILIAR
WITH THE INTRAMURAL PROGRAM.
SO THIS IS WHO WE ARE.
WE ARE CURRENTLY COMPRISED OF 7
DIVISIONS.
WE SPAN A VERY BROAD PORTFOLIO
OF RESEARCH AND WERE ABOUT
60-70% BASIC RESEARCH OR
TRANSLATIONAL RESEARCH WITHOUT
30% OF OUR INVESTIGATORS ARE IN
CLINICAL AND WE SPAN EVERYTHING
FROM YEAST GENETICS PROTEIN
BIOPHYSICS, CELL BIOLOGY AND
DEVELOPMENT AND MIRROR SCIENCE
ALL THE WAY THROUGH
TRANSLATIONAL RESEARCH AND
BEYOND.
AND WE'RE EMBEDDED IN 7
DIFFERENT DIVISIONS WITHIN THE
INTRAMURAL PROGRAM.
WE CURRENTLY TOTAL ABOUT 850
TOTAL PERSONNEL.
WE HAVE 68 PIs, 57 TENURED
SENIOR INVESTIGATORS, WE HAVE 9
TENURED TRACK INVESTIGATORS AND
I WILL SPEND TOMORROW'S TIME
THAT I HAVE TALKING ABOUT OUR
TENURED TRACK INVESTIGATORS IN
MORE DEPTH SO YOU WON'T HEAR
MUCH ABOUT THAT TODAY.
WE HAVE 2 ASSISTANT CLINICAL
INVESTIGATORS AND CURRENTLY
APPROXIMATELY 60 + STAFF
SCIENTIST AND SOMEWHERE IN THE
REGION OF ABOUT 250 TRAINEES AND
THESE RANGE FROM GRADUATE
STUDENTS AND POST BACCALAUREATE
STUDENTS, POST DOCS AND CLINICAL
FELLOWS.
WE ARE DIVIDED SCIENTIFICALLY
INTO 12 AFFINITY GROUPS AND I
WILL TALK ABOUT WHAT THAT MEANS
IN A FEW SECONDS.
WE HAVE AN EPIDEMIO LOGIC
PROGRAM OF THE POPULATION OF
HELT RESEARCH THAT HAS BEEN
FOLDED INTO THE INTRAMURAL
RESEARCH PROGRAM, THEY COMPRISE
3 BRANCHES AND 1 PROGRAM.
WE CURRENTLY HAVE 63 POLITICAL
PROGRAMS AND 2 ACCREDITED
MEDICAL TRAINING PROGRAMS ON
REPRODUCTIVE ENDOCRINOLOGY AND
INFERTILITY AND PEDIATRIC AND
ADOLESCENT GYNECOLOGY.
PLEASE INTERRUPT ME IF
SOMETHING'S NOT CLEAR, WE WILL
HAVE AN EXTENDED OPPORTUNITY FOR
TOMORROW TO HAVE A LARGER
CONVERSATION IF WHY CAN'T GET
THAT TO TODAY.
SO THIS IS OUR CURRENT
STRUCTURE.
I'M HAPPY TO SEE THAT FOR THE
FIRST TIME IN MANY YEARS WE HAVE
FILLED ALL OF OUR MANAGEMENT
POSITIONS.
WE HAVE A CLINICAL DIRECTOR IN
KATHRYN GUARDEN, DEPARTMENT
DIRECTOR IN LA VERN MENSIA, I AM
THE SCIENTIFIC DIRECTOR AND WE
HAVE DR. BIANCHI, MENTIONED THIS
MORNING WE JUST RECENTLY
APPOINTED HENRY LEVIN A SENIOR
INVESTIGATOR AS MY DEPUTY
DIRECTOR, THIS IS THE FIRST TIME
ALL POSITIONS HAVE BEEN FILLED
IN QUITE SOMETIME, IT'S GREAT WE
HAVE ALL POSITIONS CURRENTLY
FILLED.
AND ALONG THE BOTTOM ARE ALL THE
DEFINITE DIVISIONS THAT OUR
PRINCIPLE VERY LONGS ASSEMBLE
AND THEY'RE LARGELY BASED NOT
ONLY AROUND SORT OF SCIENTIFIC
DISCIPLINES BUT HISTORICALLY
THEY HAPPEN TO BE MOSTLY ALL OF
THEM WE OCCUPY ACROSS THE CAMPUS
SO YOU CAN SEE THERE'S
DEVELOPMENT OF BIOLOGY,
TRANSLATIONAL MEDICINE,
MOLECULAR AND CELLULAR BIOLOGY,
NEUROSCIENCE BASIC AND
TRANSLATIONAL BIOMISSICS,
IMAGING AND GENOMIC INTEGRITY
AND THE DIVISION OF POPULATION
HEALTH RESEARCH.
SO ALL OF OUR INVESTIGATORS ARE
ASKED TO IDENTIFY WITH A
PARTICULAR AFFINITY GROUP.
AND THESE AFFINITY DPROWPS ARE
BASICALLY SELF-ASSEMBLED.
THEY ARE CONVENIENT AND BASICKED
OFF SCIENTIFIC INTEREST, THEY'RE
INCREDIBLE LOAMACYY FLUID, YOU
CAN BE A MEMBER OF AS MANY AS
YOU LIKE, YOU HAVE TO IDENTIFY
WITH 1 BUT THERE'S NO
LIMITATIONS ON HOW MANY YOU CAN
TEND TO EACH OF THESE AFFINITY
GROUPS PROVIDE TRAINING
OPPORTUNITIES FOR ALL OF OUR
TRAINEES, SOME MEET VERY
REGULARLY EVERY WEEK, SOME MEET
BI MONTHLY AND THEY'RE REALLY
JUST A--BECAUSE WE HAVE SUCH A
BROAD PORTFOLIO, OF RESEARCH
INTERESTS, THESE SORT OF PROVIDE
SMALL DEFINED GROUPS OF
INVESTIGATORS WHO SHARE SIMILAR
INTERESTS AND ALL OF THESE
SIPICALLY GO THROUGH THE 4 YEAR
ANNUAL REVIEW PROCESS TOGETHER
AS AN AFFINITY GROUP WITH A FEW
EXCEPTIONS THAT ARE ON A
DEFINITE CYCLE AND THIS GIVES
NOT ONLY THE OPPORTUNITY TO
REVIEW THE SCIENCE THAT EACH
INDIVIDUAL INVESTIGATOR IS
CONDUCTING BUT ALSO HAVE THE
AFENNITY GROUP IS OPERATING IN
SORT OF TOTAL.
WHAT SORT OF RESEARCH AND
TRAINING ENVIRONMENT ARE THEY
PROVIDING TO ALL OF OUR
TRAINEES.
AS YOU CAN SEE SOME OF THEM ARE
QUITE LARGE, SOME OF THEM ARE
VERY SMALL AND IN FACT, 3 OF
THEM, 3 OF THE GROUPS ARE UP
HERE ARE CURRENTLY IN THE
PROCESS OF MERGING AND SPLITTING
INTO PROBABLY 1 OR 2 DIFFERENT
GROUPS.
SO AS I SAID IT'S A VERY FLUID
SITUATION THAT IS DEPENDENTOT
NEEDS OF THE SCIENCE THAT'S DONE
ON THE INSTITUTE AT THAT
PARTICULAR TIME.
SO SOME BUDGET ISSUES.
WE ARE APPROXIMATELY 13% OF THE
ENTIRE NICHD AND BUDGET
APPROPRIATION.
WE CURRENTLY OFFER 13%, FOR THIS
FISCAL YEAR WE'RE AT
$220 MILLION.
ABOUT 50% OF THAT IS WHAT WE
WOULD CALL SOFT MONEY IT GOES
TOWARD LAB CONSUMABLES OTHERS
RANKING THE INTRAMURAL LAB
PROGRAM TOGETHER WITH SALARIES.
THE LEFT-HAND SIDE OF THAT PIE
CHART IS MORE RIGID AND ABOUT A
17% ASSESSMENT GOES TOWARDS
KEEPING AND PAYING INTO THE
CLINICAL TRUSTEES WHERE YOU JUST
VISITED AND THE SERVICE AND
SUPPLY FUND IS WHAT YOU WOULD
CALL YOUR OVERHEAD IN THE EXTRA
MURAL PROGRAM AND TYPICALLY WE
KEEP A SEGMENT WITH A MILLION
DOLLARS FOR EQUIPMENT, BUT IN
THE LAST COUPLE YEARS I'M HAPPY
TO SAY WE'VE HAD CAPITAL TO BUY
MORE EQUIPMENT EQUIPMENT AND WE
HAD TO DO RENOVATIONS BECAUSE
WE'VE HAD A MAJOR FLOOD OR
RENOVATION INCIDENTS BUT THERE
IS A BUFFER OF MONEY WE KEEP IN
THERE FOR THESE INSTANCES.
THE MAKEUNSUPPORTED OF THESE
TRAINEES RIGHT NOW WE HAVE ABOUT
140 CLINICAL FELLOWS, 9 FELLOWS,
17 GRADUATE STUDENTS DISTRIBUTED
OVER A DOZEN OR SO DIFFERENT
PARTNERSHIP PROGRAMS, WE HAVE A
LITTLE OVER 90 POST DOCS AND
THIS YEAR WE HAD A BUMPER BUNDLE
OF SUMMER INTERNS IN EXCESS OF
50 AND NOW THAT WE'RE POST
COVID, THIS IS MOSTLY ALL
IN-PERSON, SO THIS IS PROBABLY
THE LARGEST SUMMER INTERNSHIP
THAT WE'VE HAD IN A NUMBER OF
YEARS AND I WILL TALK A LITTLE
BIT MORE ABOUT THAT AS I MOVE
ON.
SOME PERSONNEL UPDATES.
WE ARE HAPPY TO ANNOUNCE WE HAVE
RECRUITED [INDISCERNIBLE]
FROM--HE'S CURRENTLY AN
ASSOCIATE PROFESSOR OF
EPIDEMIOLOGY AT HARVARD TO THE
SCHOOL OF PUBLIC HEALTH AND ALSO
APPROPRIATE PROFESSOR OF
PSYCHIATRIST AT HARVARD MEDICAL
SCHOOL.
HE'S AN BRAGZALLY RECOGNIZED
EXPERT IN PSYCHIATRIC
EPIDEMIOLOGY AND HIS RESEARCH
REALLY COMBINES OF METHODS OF
PERINATAL MENTAL HELT,
EPIGENETICS MARKERS TO REVEAL
IMPORTANT INSIGHTS INTO THE
EFFECTS OF TRAUMA AND HARDSHIPS
ACROSS THE LIFE COURSE AND
INTERGENERATIONALLY ESPECIALLY
IN DIVERSE POPULATIONS.
AND HE WILL JOIN US NEXT WEEK OR
START OF NEXT WEEK.
WE ARE EXTREMELY EXCITED TO
BRING HIM ON TO THE DIVISION OF
POPULATION HEALTH RESEARCH.
I'M ALSO EXCITED TO ANNOUNCE
THAT WE HAVE BEEN ABLE TO
APPOINT VICEK [INDISCERNIBLE],
AS OUR DIRECTOR OF GENOMICS
COURT, SO THE INSIGHT, RESEARCH
AND NICHD OPERATES 3 CHORDS,
THESE ARE ALL 3 OF CHARGE TO OUR
INVESTIGATORS, WE HAVE AN
IMAGING CORE WHICH FEATURES JUST
ABOUT EVERY MICROSCOPIC
TECHNIQUE YOU CAN IMAGINE.
WE HAVE A MOLECULAR GENOMICS
CORE THAT WILL DO SEQUENCING,
THEY WILL DO TRANSCRIPT ORDER OF
MICRONS ANALYSIS, HAS
MULTIDIRECTIONAL ANALYSIS AND
TRANSCRIPTOMICS WORKS AND WE
HAVE A BIO-INFORMATICS PROGRAM
AND AGAIN, THESE ARE ALL FREE OF
CHARGE TO ALL OF OUR--AND I'M
PARTICULARLY EXCITED TO WELCOME
VIVEK, BACK, HE WAS A POST
DOCTORAL FELLOW IN MY LAB A
NUMBER OF YEARS AGO, HE WENT OUT
TO INDUSTRY FOR A FEW YEARS AND
WE'RE HAPPY TO WELCOME HIM BACK
TO THE MOTHERSHIP AND HE STARTED
IN APRIL.
A NUMBER OF RETIREMENTS,
[INDISCERNIBLE] RETIRED ALMOST A
YEAR AGO, MEL [INDISCERNIBLE]
RETIRED BEGINNING OF THIS YEAR.
ALAN DEWHAT THE DEPUTY DIRECTOR
OF THE REPRODUCTIVE
ENDOCRINOLOGY AND FERTILITY
FELLOWSHIP PROGRAM RETIRED A
LITTLE OVER A MONTH AGO AND WE
HAVE 2 MORE RETIREMENTS UPCOMING
WITH ANDRE [INDISCERNIBLE] A
NEUROSCIENTIST RETIRING AT THE
END OF THIS MONTH AND KYLE CAN
[INDISCERNIBLE] SENIOR
INVESTIGATOROT MEDICAL AND EBD O
CRINOLOGY ALSO RETIRING AT THE
END OF THIS MONTH.
SO A RENUMBER OF RETIREMENTS
THAT WE'RE LOOKING FORWARD TO
REPLACING.
OKAY, SO WE ARE RECRUITING AND
WE CURRENTLY HAVE A COUPLE OF
TENURED TRACK SEARCHES IN PLACE,
1 IS FOR AN INVESTIGATOR IN
NEURAL DEVELOPMENT WE'RE
PARTICULARLY INTERESTED IN
HIRING SOMEBODY WHO IS A BASIC
OR TRANSLATIONAL SCIENTIST THAT
INTERESTS THE NEURONAL
DEVELOPMENT DISORDERS AND WE'RE
ALSO RECRUITING AN INVESTIGATOR
FOR SOCIAL AND BEHAVIORIAL
SCIENCES BRANCH.
AND WE'RE TRYING TO CAST OUR NET
AS WIDE AS POSSIBLE AND IF YOU
KNOW ANYBODY WHO FITS THE BILL
OF EITHER OF THOSE, YOU KNOW, I
URGE YOU TO TAKE A LOOK AT THE
JOB OFFER AND URGE THEM TO
APPLY.
WE DID HAVE AN OPENING FOR OUR
BIO-INFORMATICS TRAINING PROGRAM
MANAGER, OOMPLE HAPPY TO SAY
WE'VE NOW FILL THAD AND I WILL
TAKEN--THEY UNG ABOUT THAT IN A
FEW MINUTES AND WE'RE LOOKING
FOR PEDIATRIC ENDOCRINOLOGY
STAFF CLINICIAN.
NOW 1 OF THE NICE THINGS ABOUT
BEING IN DIVISION OF RESEARCH,
IS THAT WE'RE ABLE TO TAP INTO A
NUMBER OF THE NIH WIDE
INITIATIVE ANDS 1 OF THEM IS THE
STADTMAN INVESTIGATOR RESEARCH.
THIS IS AN ANNUAL SEARCH THAT'S
OPEN TO ALL MEDICAL, BIOMEDICAL
AND BEHAVIORIAL RESEARCHERS
ACROSS THE ENTIRE TENURED TRACK
POSITIONS THAT ARE AVAILABLE.
IT'S A PRESTIGIOUS AWARD AND
WE'RE REALLY TRYING TO SEARCH
FOR INVESTIGATORS THAT ARE
STUDYING IMPORTANT PROBLEMS IN
EXTREMELY INNOVATIVE WAYS.
AND THIS IS AN ANNUAL PROGRAM
THAT GOES ON THAT'S REALLY
INDEPENDENT OF ANY 1 INSTITUTE
AND RECRUITMENT STRATEGY.
IT GENERATES A VERY, VERY LARGE
CANDIDATE WHO THEN THAT
INSTITUTES CAN LOOK TO SEE IF
THERE'S ANYBODY IN THE APPLICANT
POOL THAT FITS THE BILL OF THEIR
SEARCH EMPLOY.
THIS IS 1 OF THE TOOLS NIH HAS
BEEN USING TO TRY TO GET A BROAD
AND DIVERSE POPULATION OF VERY
LONGS.
THE SECOND IS THAT FOR THE FIRST
TIME IN A NUMBER OF YEARS, WE'RE
HAPPY TO ANNOUNCE THAT WE'RE
LOOKING FOR A LASKER CLINICAL
RESEARCH SCHOLAR.
THIS OF COURSE AS MANY OF YOU
KNOW IS A UNIQUE BRIDGE FOR
EARLY STAGE CLINICAL VERY LONGS,
CHILD HEALTH AND TOGETHER WITH
INTRAMURAL AND EXTRAMURAL AND
PARTICIPATE IN THIS INITIATIVE
AND I'M HAPPY TO ANNOUNCE THAT
WE'RE CURRENTLY LOOKING FOR A
LASKER SCHOLAR SO IF YOU KNOW OF
ANYBODY WHO WOULD BE APPROPRIATE
AND PLOAZ ENCOURAGE THEM
TO--PLEASE ENCOURAGE THEM TO
APPLY.
WE'VE HAD A NUMBER OF HONORS AND
AWARDS, I WANT TO MENTION A
COUPLE OF THEM, 1 IS EDWINNA
YOUNG, CURRENTLY AN CLINICAL
INVESTIGATOR, SOON TO BE 1 OF
OUR NEW TENURED TRACK
INVESTIGATORS.
SHE HAS BEEN ELECTED PRESIDENT
OF THE SOCIETY FOR PERIO NATAL
AND EPIDEMIOLOGIC RESEARCH.
AND THEN ALSO [INDISCERNIBLE]
WAS FEATURED RECENTLY AND JACK
[INDISCERNIBLE] WAS RECENTLY
FEATURE OFFICE OF DIVERSITY A
PODCAST, IT'S REALLY AN
OUTSTANDING INTERVIEW WITH JACK.
AND THIS MORNING WE HEARD 1 OF
OUR TENURED TRACK INVESTIGATORS
WAS AWARDED THE D-HOF F AWARD
WHICH IS VERY PRESTIGIOUS FOR
YOUNG INVESTIGATORS AND SO WE'RE
HAPPY TO SEE OUR YOUNG TENURED
TRACK INVESTIGATORS GETTING
RECOGNIZED AS WELL.
ONE OF THE MORE FUN AWARDS THAT
WE'VE TAKEN PART IN AND WE
PARTICIPATE INDEED THIS NIH
GREEN LABS PROGRAM AND IT'S AN
INITTIAIVE IT THAT AIMS TO
INCREASE AWARENESS OF SORT OF
SUSTAINABLE LAB PRACTICES SO
ELIMINATING WASTE, CONSERVING
ENERGY AND WATER, REDUCING WASTE
AND INCREASING RECYCLING AND
REALLY COLLABORATING WITH OTHER
RESEARCHERS ON THE CAMPUS TO
COME UP WITH INNOVATIONS THAT
ARE GOING TO WORK IN THE LAB
LESS DISPOSAL PROD UTRS AND MORE
SORT OF THOUGHTFULNESS ABOUT HOW
WE'RE TREATING OUR ENVIRONMENT
AND I'M HAPPY TO SEE THAT DIR
HAD 27 LABS PARTICIPATE, UP FROM
2022 AND ACROSS THE ENTIRE NIH
CAMPUS THAT THIS GREEN LABS
PROGRAM HAS BEEN NOMINATED
ITSELF FOR AN INTERNATIONAL
INSTITUTE OF SUSTAINABLE
LABORATORYS AWARD IN THE NEXT
YEAR.
SO SO IT WAS JUST A VERY
ENTHUSIASTIC PARTICIPATION BY
ALMOST ALL OF OUR LABS AND WITH
DIR.
FOR THE FIRST TIME IN A NUMBER
OF YEARS, WE HAD AN IN-PERSON
INTRAMURAL SCIENTIFIC RETREAT IN
THIS VERY SPACE YOU'RE SITTING
IN.
AND YOU CAN READ A REPORT THAT
WAS WRITTEN BY 1 OF OUR POST
DOCTORAL FELLOWS IN THE NICHD
CONNECTION AND USE THE QR CODE
TO ACCESS THAT.
I THINK THERE'S JUST THIS
AMAZING ENTHUSIASM TO BE BACK IN
PERSON TO BE ABLE TO TALK TO
SCIENTISTS IN YOUR OWN
INTRAMURAL PROGRAM AND THERE'S A
NUMBER OF POSTER SESSIONS AND
COMPLETELY ORGANIZED BY OUR
INVESTIGATORS AND TRAINEES AND
IT WAS JUST A SORT OF VERY
BUOYANT ENTHUSIASTIC DATA.
I REALLY, REALLY ENJOYED IT, I'M
HAPPY TO SEE WE'RE HAVING
ANOTHER 1 IN THE NEXT 2 WEEKS
TIME.
SO, HOPEFULLY, THAT WILL BE AS
EQUALLY SUCCESSFUL.
SO I WANT TO TURN MY ATTENTION
TO AN EICATION UPDATE, SO OF
COURSE, OUR TOP PRIORITY IS
SCIENTIFIC RESEARCH, AND WE HAVE
A REAL RESPONSIBILITY FOR OUR
EDUCATION APPROACHES.
WE ARE DESPERATELY KEEN TO BE
ACTIVELY TRAINING OUR NEXT
GENERATION OF FUTURE RESEARCHERS
WITH BASIC, CLINICAL AND BEYOND.
AND TO DO THIS, WE HAVE STARTED
TO EXPAND OUR TRAINING RESOURCES
INSIDE THE NICHD INTRAMURAL
PROGRAM.
OR WHEN I SPOKE TO YOU LAST YER
ERIN [INDISCERNIBLE] WAS
DIRECTOR OF OUR EDUCATION
PROGRAM AND SHE RAN AN AMAZING
PROGRAM WITH A LIMITED NUMBER OF
PEOPLE THAT REALLY ENTERED INTO
THE DAILY LIVES OF ALL OF OUR
TRAINEES AND WE FELT IT HAD BEEN
SO SUCCESSFUL, WE PROMOTED ERIN
TO BECOME THE DIRECTOR FOR US
AND SCIENCE PROGRAM MANAGE TO
MAKE HER DIRECTOR FOR ALL OF OUR
TRAINING PROGRAMS WE ARE TRYING
TO ESTABLISH INSIDE THE
INTRAMURAL PROGRAM.
AND 2 OF THESE NEW REPORTS ARE
[INDISCERNIBLE] I'LL SHOW YOU A
BIT ABOUT THAT IN A FEW MINUTES
AND MEGAN BOHN WHO REPLACED HER
TO BECOME DIRECTOR OF EDUCATION
AND WE WERE HAPPY TO WELCOME
MEGAN INTO THE OFFICE, SHE WAS A
HOPKINS ASSISTANT DIRECTOR AT
THE OFFICE OF POST DOCTORAL
AFFAIRS, SHE STARTED HER CAREER
WITHIN CHILD HEALTH IN KYLE
PFEIFER'S LAB AND SHE WAS
RUNNING A TRAINING PROGRAM FOR
POST DOCS IN NIAID.
SHE HAS TAKEN ON THE NEW ROLE AS
DIRECTOR OF THE OFFICE OF
EDUCATION AND WE'RE--AND I WILL
SHOW YOU SOME OF THE THINGS
WE'RE TRYING TO EXPAND AND MOVE
INTO.
I'M HAPPY TO ANNOUNCE THAT SALLY
CHANG WILL JOIN US AT THE END OF
THIS MONTH.
SHE IS TAKING UP THE
BIO-INFORMATICS TREANING MANAGER
ROLE.
AS I SAID, BIOINFORMATIC SYSTEM
1 OF OUR 3 CORES THAT WE OFFER
OUR INTRAMURAL INVESTIGATORS AND
THIS CORE ALLOWS AN INVESTIGATOR
SUCH AS MYSELF WHO HAS NO
BIO-INFORMATICS EXPERIENCE TO
START FROM A AND GO TO Z WITH AN
IDEA AS COCKAME, MEEAS IT
SOUNDS, THEY WILL START AT THE
CORE, SHOW YOU HOW TOY DID SIGN
YOUR EXPERIMENT, HOW TO GATHER
INFORMATION, HOW TO ANALYZE
INFORMATION AND HOW TO TREAT THE
DATA RIGHT TO THE POINT OF
PUBLICATION AND THIS CORE WAS
ESTABLISHED IN INTRAMURAL
PROGRAM ABOUT 4 OR 5 YEARS AGO,
IT HAS BEEN SUCH A SUCCESS THAT
WE HAVE REALLY AND EXPAND AS
MUCH AS WE CAN, AND 1 OF THE
ISSUES THAT WE KEPT HEARING
ABOUT WAS THAT A LOT OF THE
PERSONNEL WORK IN THAT CORE
SPEND ALL OF THEIR TIME TRAINING
THE TRAINEES TO PROGRAM, TO USE
OUR--TO PYTHON TO USE PROGRAMS
THAT ARE USED FOR BIOINFORMATIC
INFORMATION AND WE SORT OF
REALIZE THAT WE REALLY NEED TO
PUT A TRAINING PROGRAM MANAGER
IN PLACE THAT'S BASICALLY GOING
TO ALLOW TO FREE UP THE
INFORMATICIANS TO DO, AND HEAD
UP WHAT THEY ACTUALLY DO AND FOR
OUR TRAINING CORE TO PROVIDE A
WHOLE BUNCH OF KNCHT TRAINING
INITIATIVES AND HERE'S JUST A
LIST OF SOME OF WHAT WE'RE
STRARTING WITH AND WE WANT TO,A
ASSESSES OUR DATA SCIENCE
TRAINING NEEDS, WHAT KIND OF
SOFTWARE, HARDWARE ARE PEOPLE,
OR ARE IN DEMAND EMPLOY WE HAVE
A BUNCH OF SHORT COURSES THAT
WE'RE ABOUT TO INTRODUCE AND ANY
OTHER TRAINING THAT'S REQUIRED
AND REALLY SORT OF JUST TO THINK
ABOUT HOW THIS FIELD IS MOVING
FORWARD.
I'M A NEUROSCIENTIST WHO STUDIES
SYNAPTIC TRANSMISSION AND
DEVELOPMENT AND UNTIL 3 YEARS
AGO, I NEVER REALLY THOUGHT I
WOULD NEED MUCH IN THE WAY OF
BIO-INFORMATICS AND NOW A LARGE
PART OF WHAT MY LAB WAS DOES
RELIES HEAVILYOT BIOINNORMATTICS
CORE AND NONE OF US HAVE ANY
TRAINING IN THAT AND THIS CORE
HAS BEEN TRIEWMENTAL IN ALLOWING
US TO TAKE ON REALLY CHALLENGING
TRANSCRIPTOMICS FOR DEVELOPING
CORTEX.
SO WE'RE REALLY TRYING TO GROW A
COMMUNITY OF LEARNERS, NOT ON
SITE, BUT ACROSS MULTIBLE
BIO-INFORMATICS CORES AND AS CAN
YOU IMAGINE THIS HAS BECOME
ESSENTIAL TO THE LIKES OF MANY
INSTITUTES AND RATHER THAN KEEP
REPEAT XG REINVENTING THE WHEEL
WE'RE TRYING TO FORM A NETWORK
ACROSS DIFFERENT INFORMATICS
TRAINING COURSE WHERE WE CAN SEE
AND HELP OTHER INSTITUTES AND
VICE VERSA.
THAT'S INCREDIBLE LOAMACYY
HELPFUL SO FAR.
SO OUR OFFICE OF EDUCATION
REALLY HAS ABOUT 3 MAIN CENTRAL
FOLK ALAREAS AND THEY ARE CAREER
EXPLORATION, PLANNING, GRANT
WRITING AND SCIENCE AND
COMMUNICATION AND I WANT TO
EXPABD ON EACH OF THESE IN MY
REPLAINING SLIDES.
THESE ARE SOME OF THE ACTIVITIES
THAT THE OFFICE OF EDUCATION'S
OFFED IN THE LAST--THIS CALENDAR
YEAR, SO, WE CAN NOT ONLY
SEMINAR SERIES FOR PROFESSIONAL
DEVELOPMENT AND TO HELP AND
GRADUATE MEDICAL SCHOOL
APPLICATION PREPARATION, WE'VE
RAN 2 K99 GRANT WRITING COURSES,
1 IN SPRING AND JUST A MONTH OR
2 AGO.
WE HAVE PUT A HEAVY EMPHASIS ON
ALTERNATIVE CAREERS BEYOND
ACADEMIA AND REALLY TAPPING INTO
THE INDUSTRIAL PART OF THE DMV
AREA BRINGING IN MANY, MANY
CONSULTANTS FOR THESE SESSIONS
AND WE HAVE A MONTHLY WEBINAR
SERIES AND REALLY TRYING TO TAP
INTO WHAT OUR TRAINEES ARE
EXPERIENCING AND IF THEY'RE NOT
EXPERIENCING, WE WANT TO KNOW
WHAT IT IS THAT THEY'RE MISSING.
SO WE ARE THE STATE REGULATORRED
AN EXIT SURVEY JUST IN THE LAST
YEAR WHICH HAS BEEN INCREDIBLY
USEFUL TO SORT OF REALLY GET A
REALLY CLEAR IDEA OF HOW WE ARE
PERCEIVED BY OUR TRAINEES WHICH
IS NOT HOW WE PERCEIVE
OURSELVES, WE HAVE NUMEROUS
SCIENTIFIC WRITINGS SKILLS
WORKSHOPS AND DIFFERENT FORMS OF
JOB APPLICATIONS AND PROCESSES.
WE HAD A VERY SUCCESSFUL ANNUAL
FELLOWS RETREAT DOWN AT THE
RONALD REAGAN BUILDING DOWN TOWN
AND OUR QUARTERLY GROUP POST DOC
ORIENTATIONS WHICH WE JUST
STARTED THIS YEAR.
AND WE ALSO PARTICIPATE IN A 3
MINUTE INSTITUTION TALK WHERE
EACH POST DOC OR TRAINEE IS
GIVEN MULTIPLE SESSIONS WITH A
PROFESSIONAL SPEECH WRITER ON
HOW TO MAKE AN ELEVATOR PITCH ON
USING 1 SLIDE AND FOR 3 PLINUTES
ON THEIR PRESENTATION, AND THE
ENTHUSIASM FOR THAT PROGRAM HAS
BEEN TREMENDOUS.
IT WENT FROM 1 OR 2 INSTITUTES
TO CURRENTLY 12 INSTITUTES.
I'M HAPPY TO SAY CHILD HEALTH
WON THE AWARD LAST YEAR BUT NOT
THIS YEAR, AND OUR STUDENTS
REALLY GET A GREAT SPEAKING
OPPORTUNITY AND THINK ABOUT HOW
PARTICIPATE XG TALKING ABOUT
YOUR CONSCIENCE TO A GRAWD
GENERAL AUDIENCE IN CONCISE
TERMS.
THAT SAID, WE HAD A VERY
SUCCESSFUL POST BACKPOSTER DATE
IN MAY AND WE HAD 69 POSTER
PRESENTATIONS THAT WAS ABOUT 60
OR SEIVET% OF THE ALL OF OUR
POST BACKS THAT ARE ON RECORD
FOR US.
THIS IS AN NIH WIDE 2 DAYS AND
HAD IS NOW THE SECONDIER I'VE
DONE THIS, I THINK I TRIED TO
GET EYES ON EVERY 1 OF CHILD
HEALTH'S POSTERS AND THE
ENTHUSIASM OF THE PRESENTERS IS
JUST INKRE TINSIBLE.
THEY ARE--WHAT THEY ARE ACHIEVE
NOTHING 1-2 YEARS IS REALLY
REMARKABLE AND IT'S JUST
INCREDIBLE LOAMACYY
GRATIFYING--INCREDIBLY
GRATIFYING FOR THEM, WHERE THEY
HAVE EXPERIENCE FOR THEM TO COME
UP AND CHALLENGE THEM.
THERE'S AN AWARDS CEREMONY TO
GET THEIR POSTERS AND IT'S TURN
INTOED A MAJOR EVENT AND POST
COVID, IT'S BECOME VERY, VERY
SUCCESSFUL.
SO WE HAVE A NUMBER OF TRAINEE
RECRUITMENT INITIATIVES IN THE
LAST COUPLE OF YEARS, WE HAVE
JUST--IN THE PROCESS OF HIRING
AN OUTREACH RECRUITMENT AND
TRAINING SPECIALIST IN THE
OFFICE OF EDUCATION, AND I'M
PARTICULARLY PLEASED AND
SATISFIED BY OUR ISHT ACTION
WITH THE NEW OFFICE OF HEALTH
EQUITY AND.
WE MEET MONTHLY WITH ERICA AND
HER.
TEAM WE ARE LOOKING AT HOW TO
RECRUIT AT NIH BUT NOT ONLY AT
NIH BUT NATIONAL CONFERENCES AND
THE LIKE, AND REALLY TRYING TO
TAP INTO LOCAL SCIENCE FAIRS.
WE HAVE A NUMBER OF ACADEMIC
INSTITUTIONS AROUND THE
DELAWARE, VIRGINIA AREA THAT ARE
HISTORICALLY UNDERREPRESENTED
INSIDE THE NIERK H INTRAMURAL
PROGRAM.
WE'RE PARTNERING WITH MANY OF
THESE OUTSIDE ACADEMIC
INSTITUTES USING A MODEL THAT
WEB CONNECTED HAVE USED
PREVIOUSLY FOR OUR HOWARD
UNIVERSITY PART MERSHIP.
WE HAVE CHANGED OUR OFFICE OF
EDUCATION WEB CONTENT THANKS TO
THE PRESS OFFICE FOR HELPING US
AND ALLOWING US TO SHOWCASE
RESOURCES, FACILITIES, TRAINEES,
PROGRAMMING AND OPPORTUNITY AND
REALLY JUST TRYING TO SHOWCASE
THE WORK THAT OUR FELLOWS AND
INVESTIGATORS ARE GETTING UP TO.
SO AS I SAID 1 OF THE
INITIATIVES THAT WE STARTED WITH
THE OFFICE OF HEALTH EQUITY IS
WE ESTABLISHED WHAT WE CALL
THIS--AN AMBASSADOR'S PROGRAM
WHERE MY OFFICE WILL OFFER
TRAVEL AWARDS FOR UP TO 25
SELECTED APPLICANTS AND THESE
ARE TYPICALLY Ph.D. STUDENTS,
GRADUATE STUDENTS OR EARLY POST
DOCS IN BIOPHYSICS AND WE'RE
STARTING WITH THE APPLICANTS
RESEARCH CONFERENCE, THIS IS A
WIDELY ATTENDED BY A DIVERSE
POPULATION THAT ARE NOT BEING
TYPICALLY MET BY NIH'S NEEDS AND
THE GOAL HERE IS NOT ONLY TO
OFFER TRAVEL MONEY OR AWARD
MONEY FOR OUR TRAINEES TO GO
THERE BUT ALSO FOR THEM TO
SHOWCASE WHAT WE HAVE TO OFFER.
WHAT DO WE HAVE TO OFFER, SORT
OF START A DIALOGUE THAT THE
NIESH H INTRA MOWRAL PROGRAM IS
A PLACE YOU WANT TO COME AND
TRAIN.
WE'RE CURRENTLY IN THE PROCESS
OF RUN THANKSGIVING APPLICATION
PERIOD.
THE APPLICATIONS JUST CLOSED.
THE FUNDING WILL BE FOR THE NEXT
APPLICANTS WHICH IS NEXT MARCH
AND WE'RE EXTREMELY ENTHUSIASTIC
ABOUT THIS AND HOPEFULLY WE'RE
GOING TO EXPAND THIS YAWBD
BEYOND THIS 1 MEETING TO ALL OF
OUR SOCIETY MEETINGS AND WHAT
WE'RE TRYING TO DO RIGHT NOW IS
GATHER ALL OF THE INFORMATION
ABOUT WHAT SOCIETIES TYPICALLY
AATTEND AND WHAT MEETINGS WE
ATTEND AND WHAT LEVEL OF
OUTREACHRY HAVE THERE WHICH IS
USUALLY SURPRISINGLY QUITE LOW
BUT IMPORTANTLY HOW CAN WE USE
OUR TRAINEES TO GET THEM THE
OPPORTUNITY TO GO TO THESE
MEETINGS TO TALK ABOUT CHILD
HEALTH AND THE TRAINING TIEWPTS
THAT ARE AVAILABLE HERE.
AS YOU KNOW OUR DIVERSITY
INITTIAIVE ITS REMAIN VERY
STRONG AND ACTIVE AND AS I TOLD
OUR BSC, THIS SPRING, WE HAVE
CURRENTLY 4 CURRENT SCHOLARS OF
THE POST BACKLEVEL AS PART OF
OUR DEVELOPINGTAL END SCHOLARS
PROGRAM, WE HAVE 1 NEW POST
DOCKER IN THE TENURED TRACK LAB
AS PART OF OUR FELLOWS
RECRUITMENT AND INTERNAL
AUDITTISHIAATIVE AWARD AND ALL
OF THESE CYCLES STARTING
JANUARY 25.
WITH THE OFFICE OF HEALTH
EQUITY, WE ALSO ESTABLISHED A
NEW SUMMER RESEARCH PROGRAM SO
TYPICALLY AS I SAID WE HAVE
ABOUT 50 SUMMER FELLOWS COME
INTO CHILD HEALTH AND IN TALKING
WITH THE OFFICE OF HEALTH
EQUITY, WE DECIDED THAT WE WOULD
START SMALL, WE WOULD OFFER 5
POSITIONS FOR SUMMER STUDENTS TO
COME IN, IT WOULD BE A
COLLABORATIVE EFFORT BETWEEN MY
OFFICE AND THE OFFICE OF
EDUCATION AND OFFICE OF HEALTH
EQUITY AND IT'S A GNAW PROGRAM
THAT'S FOCUSED ON PROMOTING
HEALTH EQUITY AND HEALTH
DISPARITIES RESEARCH AND WE HAD
OUR INVESTIGATORS ENCOURAGE
THEIR STUDENTS TO NOMINATE
PARTICULARLY THOSE THAT HAD NO
PREVIOUS RESEARCH EXPERIENCE
FROM GROUPS TRADITIONALLY
UNDERREPRESENTED FROM
DISADVANTAGED BACKGROUNDS AND
INDIVIDUALS WITH DISABILITIES.
AND OUR OFFICE OF HEGHT EQUITY
THEN ESTABLISHED THIS AND IN A
SEMINAR SERIES AND REALLY SORT
OF NURTURED ALL OF THESE THROUGH
THE SUMMER AND EXCITED TO SAY WE
HAD 5, THEY CAME FROM
[INDISCERNIBLE] UNIVERSITY,
HOWARD UNIVERSITY, UMBC, AND
TUFTS, THEY CROSS EVERYTHING
FROM IMMUNOLOGY, PUBLIC BIOLOGY
AND INTERNATIONAL STUDIES AND
WERE REPRESENTED IN 4 LABS IN
THE INSTITUTE.
INIA ADDITION TO DOING
SCIENTIFIC RESEARCH, THEY WERE
ALSO GIVEN A SEMINAR SERIES FOR
OVER THE COURSE OF 5 WEEKS THEY
WERE HERE AND IT TURNED OUT TO
BE AN EXTREMELY SUCCESSFUL
PROGRAM.
AND SO WE DECIDED TO EXPAND
THAT, TO 10-15 OPPORTUNITIES IN
OUR NEXT SUMMER STAGE AND REALLY
HATS OFF TO HEALTH EQUITY FOR
TEABING THAT AND RUNNING SUCH A
SUCCESSFUL PROGRAM.
WE ALSO HAVE A VIRTUAL SUMMER
STUDENT OPPORTUNITY.
THAT WAS STARRED BY
[INDISCERNIBLE] DURING COVID
WHEN OUR SUMMER PROGRAM WAS SHUT
DOWN IN PERSON, THEY TOGETHER
WITH THE OPERATING GLOBALLY
OPERATING GLOBALLY
OFF--OFFICE OF EDUCATION STARTED
A VIRTUAL PROGRAM WHERE IN THE
MORNING THE STUDENTS WERE GIVEN
DIDACTIC TRAINING AND IN THIS
CASE THEY WERE TAUGHT TO DO
BLAST SEQUENCES TO LOOK FOR
SHARP FORM RNAs AND THE
DATABASE AND THEN IN THE
AFTERNOON THEY WOULD BE LEFT TO
DO A LITTLE BIT OF RESEARCH ON
THIS PROGRAM.
AND [INDISCERNIBLE] AND PHILLIP
AND MATHIAS HAVE RUN THIS FOR
ABOUT 3 YEARS AND IT REALLY IS
TARGETING SYSTEMIED AT
UNDERGRADUATE STUDENT WHO IS
WANT TO EXPLORE BASIC AND BIY O
INFORMATICS RESEARCH BUT REALLY
WHO CAN'T COME TO THE
[INDISCERNIBLE] AREA SO IT'S A
BIG ASK FOR MANY STUDENTS TO
COME TO BETHESDA AND IT'S AN
OPPORTUNITY TO DO THIS REMOTELY
AND AS WE SAID, WE HAD 10 THIS
YEAR, 15 LAST YEAR, IT'S AN
INKRED EBLLY SUCCESSFUL PROGRAM.
TO CAP ALL THAT OFF, WE HAVE OUR
SUMMER AND STUDENT POSTER DATE,
AND WE HAD 54 IN-PERSON SUMMER
FELLOWS THIS YEAR.
WE HAD 10 FELLOWS AND OUT OF
THAT WE HAD 51 POSTERS LAST
MONTH SO AGAIN, A VERY
SUCCESSFUL AND ENGAGING SUMMER
PROGRAM POSTER DATE.
I HAVE A NUMBER OF COMPETITIVE
FUNDING OPPORTUNITIES THAT WE'RE
SUPPORTING.
WE HAVE OUR NICHD INTRAMURAL
FELLOWSHIP AWAR, IT WILL BE THE
EIGHTH CYCLE WHICH WE STARRED IN
UNI, THIS IS A GRAPT WRITING
OPPORTUNITY FOR OUR POST DOCS
AND CLINICAL FELLOWS BUT
PRIMARILY THOSE WHO ARE IN THE
SECOND AND THIRD YEAR OF THE
TRAINING SO AN AWARD FOR $25,000
FOR 1 YEAR AND IT CAN BE USED
REALLY TOWARDS ANYTHING THAT
THEY WISH THAT WILL EXPAND THEM
OUT OF THEIR EXISTING RESEARCH
AND INTERESTS THAT CAN BE
EQUIPMENT THAT'S NEEDED OR
REAGENTS, IT CAN BE TRAVEL OR
TRAVEL TO A TRAINING OPPORTUNITY
OR TO USE IT AS A STIPEND TO
HIRE A POST BACCALAUREATE FELLOW
AND IN 2003 WE HAD 13
APPLICATIONS,--2023 WE HAD 13
APPLICATIONS AND REVIEWED BY THE
GRANTEES AND WORKED ALONG THE
F-SERIES AWARD ANDS THE CRITERIA
ARE BASED ON FELLOWSHIP AND
BIOKETCH AND LEADERSHIP AND
DIVERSITY STATEMENT, THEIR
SPONSORS AND COLLABORATORS, THE
RESEARCH TRAINING PLAN, TRAINING
POTENTIAL, AND WHAT THE
ENVIRONMENT IS AND HOW THAT
WOULD BE COMMITTED TO THEIR
TRAINING.
AND I'M HAPPY TO SEE THAT WE HAD
A VERY SUCCESSFUL CYCLE THERE.
THE SECOND EARLY CAREER AWARD WE
HAVE IS REALLY MODELED AFTER AN
INITIATIVE THAT DIANEA BIANCHI
TARTED AT TUFTs UNIVERSITY.
THIS IS OUR FOURTH CYCLE, THIS
AN OPPORTUNITY AIMED AT
PROMOTING EARLY STAGE OF
INTRAMURAL RESEARCHERS AND ALL
DISCIPLINES, BASIC CLINICAL AND
TRANSLATIONAL AND EXCITED THAT
DIANEA USES MONEY FROM THE
OFFICE OF THE DIRECTOR TO
SUPPORT THIS AWARD AND IT'S
BEEN--THEY WERE ABOUT TO START
OUR POST SITE WITH THIS AND
INDIVIDUALS AGAIN ARE AWARDED UP
TO $25,000 FOR OUTSTANDING
ORIGINAL RESEARCH PROPOSALS.
THEY CONTAIN 10,000 FOR
APPLICATIONS FOR SCIENTIFIC
MEETING APPLICATION OR TO GO FOR
AITITIONAL TRAINING THAT WILL
SUPPORT THEIR PROFESSIONAL
DEVELOPMENT AND THIS YEAR WE HAD
57 APPLICATIONS FOR A TOTAL OF
19 AWARDS FOR ABOUT HALF A MILL
YEN DOLLARS.
JUST A REALLY EXCITING EARLY
CAREER OPPORTUNITY.
FINALLY 1 OF THE NEW PROGRAMS WE
STARRED THIS YEAR WE HAVE A
POPULATION OF STAFF SCIENTISTS
AND STAFF CLINICIANS THAT ARE
TYPICAL LOW IN PARTS OF CAREER
THAT THEY DON'T CONSIDER
THEMSELVES TRAINEES, WE DON'T
CONSIDER THEM TRAINEES AND
THERE'S KIND OF LIKE A LOST
POPULATION AND IN TALKING WITH
THE STAFF SCIENTISTS, IT BECAME
CHLOR THAT THEY THEMSELVES FELT
THAT THEY NEEDED SOME
OPPORTUNITY FOR TRAINING AND
DEVELOPMENT TO DO CAREER
DEVELOPMENT.
MANY OF OUR STAFF SCIENTISTS SEE
THAT OPPORTUNITY--THIS IS A
LONG-TERM GOAL, IN SEE IT AS A
STEPPING STONE TO AN INDEPENDENT
CAREER AND SO WE ESTABLISHED A
NEW CAREER OPPORTUNITY AWARD FOR
AN INDIVIDUAL AWARDS UP TO
$20,000 AND AGAIN, THIS IS
REALLY OPEN ENDED WITH WHAT YOU
CAN USE THAT MONEY FOR AND MOST
PEOPLE IN THE END USED IT TO GO
TO TRAINING OPPORTUNITIES THINGS
LIKE [INDISCERNIBLE] TRAINING
COURSES REALLY FOR USE AND
PROFESSIONAL DEVELOPMENT.
SO WE HAD 23 APPLICATIONS OF ALL
OF OUR THROW A FOOTBALL
SCIENTIST POPULATION FOR 11
AWARDS THAT TOTALED ABOUT 100
AND THIOF THE THOUSAND DOLLARS.
SO I WILL STOP THERE, THESE ARE
SOME OF THE INITTIAIVE ITS WE
HAVE GOING ON AT THE MOMENT.
I WILL BE HAPPY TO TAKE ANY
QUESTIONS YOU MAY HAVE.
THANK YOU.
[ APPLAUSE ]
ANYBODY?
>> I WOULD LIKE TO JUST COMMENT
THAT IT'S BEEN A REAL PLEASURE
TO SEE YOU GIVE THIS
PRESENTATION AS INTERIM DIRECTOR
AND LAST YEAR AS DIRECTOR AND
THEN THIS YEAR AGAIN, SO IT'S
NICE FROM A COUNSEL PERSPECTIVE
TO SEE THE PROGRESS YOU'VE MADE
NTHANK YOU.
THANK YOU FOR SAYING THAT I
APPRECIATE THAT.
>> I DID HAVE A COUPLE
QUESTIONS, SOME ARE CLARIFYING
AND SOME ARE CURIOSITY.
YOU DISCUSS THE AFFINITY DPROWPS
AND YOU MENTIONED SOME OF THEM
ARE SMALL, IINOID 1 OF THEM HAD
2 PEOPLE, CAN YOU TELL US ABOUT
THE PROCESS FOR DECIDING HOW
OFTEN DO YOU REVIEW AFFINITY
GROUPS AND HOW DO YOU MAKE THOSE
DECISIONS COLLECTIVELY?
>> YEAH, SO, THOSE ALL OF THOSE
NAMES THAT ARE IN THOSE AFFINITY
GROUPS THAT'S THEIR PRIMARY
CHOICE AFFINITY GROUP.
SO A NUMBER OF THOSE AFFINITY
GROUPS HAVE SECONDARY MEMBERS.
SO ALTHOUGH THERE'S ONLY 2 LABS
IN THERE, THERE ARE SEVERAL
OTHER INVESTIGATORS THAT DROP IN
AND DROP OUT OF THAT.
AND WE'VE TRIED TO ALLOW THEM--I
MEAN, I PARTICULARLY DON'T WANT
TO PUT TOO MANY RULES ON TO THEM
BECAUSE THEY'RE REALLY YOUR
SCIENTIFIC PEERS YOU WANT TO
INTERACT WITH AND PARTICULARLY
IT'S YOUR TRAINEES THAT WANT TO
INTERACT WITH LIKE TRAINEES FROM
LABS DOING SIMILAR RESEARCH.
SOME OF THEM ARE TOGETHER FOR
HISTORICAL REASONS, THEY'VE BEEN
AROUND, THESE PEOPLE HAVE BEEN
AROUND FOR MANY YEARS AND HAVE
INTERACTED AND OTHER VS COME
TOGETHER ANDEC BROKEN APART.
SO THE SMALL 1S I HAVE
HAD--VERONICA AND I HAD THIS
CONVERSATION THE OTHER THAT
BETTER OPPORTUNITIES NOW FOR
THERE ARE 2 GROUPS THAT WANT IS
2 AND 1 IS 3, THEY'RE ALL
THINKING ABOUT SIMILAR THINGS
AND THEY'RE CLINICAL AND
TRANSLATIONAL AND SO NOW IT
WOULD BE GREAT FOR THEM TO COME
TOGETHER AND EITHER JOIN 1 GROUP
OR TO BREAK APART SOMETHING
ELSE.
SO IT'S REALLY AT THE DISKRUGZ
OF THE INVESTIGATORS, WHAT ARE
THEIR NEEDS IN TERMS
INTELLECTUAL INTERACTIONS.
YOU HAVE TO REMEMBER, SO MY LAB
IS IN THIS BUILDING, THERE ARE
50 INVESTIGATORS IN THIS
BUILDING ACROSS 13 INSTITUTES SO
ALTHOUGH MY AFFINITY GROUP IS
ALL CHILD HEALTH INVESTIGATORS I
AH ALSO INTERACT WITH A HUGE
SWATH OF NEUROSCIENTIST
INVESTIGATORS SO RATHER THAN
TRYING TO LOCK PEOPLE INTO
INTERACTING WITH ONLY CHILD
HEALTH INVESTIGATORS, IT'S AN
OPPORTUNITY FOR THE TRAINEES TO
FIND A HOME AS WELL AS SORT OF
ENCOURAGE OTHER INTERACTIONS SO
THAT'S HOW WE SORT OF THINK
ABOUT THEM.
>> SO MY OTHER--THIS IS CHANGING
THE TOPIC A LITTLE BIT MY OTHER
QUESTION WAS ABOUT WHEN YOU WERE
DESCRIBING THE TRAINING
OPPORTUNITIES YOU TALKED ABOUT
THE OFFICE OF EDUCATION,.
>> YEAH.
>> AND THEN YOU TALKED ABOUT THE
OHE.
CAN YOU CLARIFY FOR US WHAT'S AN
INTRAMURAL OFFICE VERSUS AN
EXTRAMURAL OFFICE AND ON TOP OF
THAT HOW DO IMPOSSIBLE TO BUILD
RAMURAL AND EXTRAMURAL OFFICE
HAVE THE SAME FOCUS IF YOU WANT
TO CALL IT THAT, HOW DO THEY
WORK TOGETHER?
>> RIGHT.
SO MOST OF WHAT I'VE TALKED
ABOUT ARE OFFICES THAT ARE
UNIQUE TO INTRAMURAL WITH THE
EXCEPTION OF THE OFFICE OF
HEALTH EQUITY WHICH RESIDES IN
THE OFFICE OF THE DIRECTOR.
AND THAT IS A NEWEL FORMED
OFFICE THAT WE AS AN INSTITUTE
HAVE USED TO CAPTURE DIVERSITY
EQUITY, INCLUBHOUSIVITY, ALL OF
THESE INITIATIVES AND RATHER
THAN HAVING 1 FOR INTRAMURAL, 1
FOR EXTRAMURAL, WHATEVER,
THEY'RE LOOKING IN ALL
DIRECTIONS SOLET OHE HAS BEEN
INCREDIBLY SUCCESSFUL--SO 1 OF
THE THINGS I DID WHEN I FIRST
BECAME DIRECTOR WAS TO APPOINT
AN ASSOCIATE DIRECTOR FOR
DIVERSITY WELL THEN IT'S LIKE
WE'RE JUST DUPLICATING OUR
EFFORTS SO WHY DON'T WE MEET TO
SEE HOW WE CAN DO THIS TOGETHER
AND THAT HAS--YOU KNOW THAT'S 1
OF THOSE KIND OF SITUATIONS FOR
FORMING THE OFFICE HAS BEEN SO
RIGHT FOR THE INSTITUTE BECAUSE
THEY ARE LOOKING AT BOTH EXTRA
AND INTRA, AND SEEING WHAT'S
UNIQUE TO INTRA THAT THEY CAN
HELP US COMPARED TO WHAT THEY'RE
DOING IN ODO OR EXTRA.
AND I HAVE TO SAY THAT ERICA AND
1 [INDISCERNIBLE] THEIR
ENTHUSIASM IS INFECTIOUS AND
THEY KEEP COMING TO ME AND
SAYING, WELL WE ARE THIS IDEA
BUT YOU KNOW WE NEED SOME MONEY
AND I GO HOW MUCH MONEY?
AND THEY GO, UM, 10, 15?
AND THEY'RE YUF--YOU KNOW THAT
THEY'RE GOING TO TAKE THAT AND
RUN WITH SOMETHING VERY, VERY
SUCCESSFUL.
SO THAT'S REALLY THE ONLY OFFICE
THAT I TALKED ABOUT THAT SPANS
INTRA VERSUS EXTRA.
EVERYTHING ELSE IS UNIQUE EITHER
WITHIN OUR OWN INSTITUTE OR IS
ACROSS THE NIH INTRAMURAL WIDE.
YEAH?
>> THANK YOU FOR THE NICE
PRESENTATION.
I HAVE A QUESTION ABOUT THE
TBRADUATE STUDENTS YOU BRIEFLY
MENTIONED YOU HAVE FOUND 15, I
THINK OUT OF 250 SOMETHING
TRAINEES WITH PARTNERSHIPS TO
CONTINUE TO COLLABORATE A LITTLE
MORE WITH HOW THAT WORK ANDS
POTENTIALLY THE GROUP OF
TRAINEES YOU HOPE TO INCREASE IN
NUMBER.
>> YES, YES, GREAT QUESTION.
SO, DURING THE FARMUS--WHEN
HAROLD VARMUS WAS THE NIH
DIRECTOR HE WAS KEEN TO
ESTABLISH A GRADUATE PROGRAM ON
CAMPUS AND FOR HISTORICAL
REASONS, THE NIH IS DELIBERATELY
NOT AN ACCREDITED ACADEMIC
INSTITUTION AND HE SAW A
WIMBERLY THAT WE COULD USE THAT
TO OUR ADVANTAGE AND FORM
PARTNERSHIPS WITH INTERESTED
UNIVERSITIES AROUND THE GLOBE.
SO SOME OF THEM CAME FROM THE
OXFORD, CAMBRIDGE PROGRAM,
UNIVERSITIES OF FROM CHILE, HONG
KONG, DUKE, BROWN AND SO ON AND
SO FORTH.
SO THESE ALL POPPED UP AND KIND
OF BECAME INCREDIBLY SUCCESSFUL
BUT QUITE SMALL, YOU BE SO
MAYBE, 3, 4, 5, STUDENTS TOPS,
SO, CURRENTLY THEIR EXISTS
SOMETHING LIKE 38 DIFFERENT
GRADUATE PARTNERSHIP PROGRAMS,
SOME ARE JUST INDIVIDUAL
PARTNERSHIPS, CAN YOU HAVE A
PARTNERSHIP, IF I HAVE A FRIEND
AT A UNIVERSITY AND WE WANT TO
SHARE A DPRADUATE STUDENT, WE
CAN PULL THEM ON INDIVIDUAL
PARTNERSHIP AND WE WILL SHARE
THAT GRADUATE STUDENT.
NOW THESE GRADUATE STUDENTS ARE
SUBJECT TO THE RULES AND
REGULATIONS OF THEIR HOST
INSTITUTION, SO THAT'S WHO'S
GRANTING THE DEGREE AND SO THEY
ALL VARY IN HOW THEY OPERATE.
SOME STUDENT OR TRAINEE COMES TO
THE INTRAMURAL PROGRAM, THEY DO
THEIR ENTIRE RESEARCH PROGRAM AT
THE NIH, SOME OF THEM LIKE KARL
[INDISCERNIBLE], YOU DO 2, IN
STOCKHOLM, 2 AT THE NIH, AT
OXFORD, 2 AT THE CAMBRIDGE, 2 AT
NIH, SO THEY'VE BEEN AROUND NOW
FOR ABOUT ALMOST A LITTLE SHORT
OF 15-20 YEARS AND WHEN I BECAE
ACTING SCIENTIFIC DISTRICTOR, I
HAD 8 OR 10 GRADUATE STUDENTS
OVER THE COURSE OF MY TIME AT
NICHEAR D AND I ASSUMED THAT THE
INNSITUTE HAD MANY, MANY MORE
THAN WE ACTUALLY HAD AND SO TO
MY SORT OF SURPRISE WE ONLY HAD
10 OR 12 AT ANY 1 TIME SO 1 OF
THE VERY FIRST THINGS I DID WAS
ASK PEOPLE, WHAT'S THE
IMPEDIMENT TO DOING THIS BECAUSE
IT'S SUCH A REWARDING
OPPORTUNITY TO HAVE A IMRADUATE
STUDENT AND MOST PEOPLE WERE
LIKE, IT'S TOO CONFUSING TOO
EXPENSIVE, THERE'S HIDDEN COSTS,
BEN FEES, TUITION, I DON'T KNOW
WHO PAYS THAT, AND SO MY--I
JUSTED, I WILL PAY FOR ALL OF
THAT, I WILL JUST PICK UP, YOU
PAY FOR THE SALARY AND I WILL
PAY EVERYTHING ELSE.
SO I CENTRALIZED ALL THOSE
CHARGES TO COME FROM THE OSD.
AND MY MOTIVATION FOR THAT WAS
TO RETHAT AND PAY THEM AND SAY
IT WAS TOO DIFFICULT.
I WENT TO WE HAVE 11 NOW WE'VE
GOT 17 AND WE'VE GOT MORE COMING
SO I'M HOPING THAT THAT NUMBER
WILL KEEP INCREASING AS TIME
GOES ON.
SO IT'S A--I THINK THAT'S AN
INCREDIBLE VALUABLE OPPORTUNITY
FOR US TO HAVE GRADUATE
STUDENTS.
YEAH?
>> I JUST WANTED TO ECHO THE
COMMENT FROM KATHRYN BECAUSE
IT'S BEEN AMAZING TO SEE YOU GO
FROM INTRA TO THE BIG DOG SHALL
WE SAY.
I WILL SAY YOU HAVE INFECTIOUS
ENTHUSIASM AND WE ALL FEEL IT,
EX- IN EVERYTHING YOU'VE DONE,
I'M SO EXCITED TO SEE HOW VERY
INVESTED YOU ARE IN THE NEXT
GENERATION AND HOW THOUGHTFUL
YOUR LEADERSHIP HAS BEEN IN THAT
REGARD, SO JUST KNOW THAT YOU
ARE IMPACING ALL OF US WITH YOUR
ENTHUSIASM AND WE REALLY
APPRECIATE IT.
THE OTHER THING REALLY EXCITED
TO HEAR YOU SAY IS THAT YOU ARE
ACTUALLY WORKING WITH ABERCROM,
FOR PEOPLE WHO DON'T KNOW THAT
PROGRAM, LOOK IT UP EMPLOY IT IS
AN AMAZING PROGRAM AND REFLEKS
THE NEXT GENERATION SO THANK YOU
FOR YOUR LEADERSHIP AND KUDOS ON
SUCH A JOB WELL DONE.
WELL, I REALLY, REALLY
APPRECIATE IT.
THAT MEANS A LOT TO ME.
THANK YOU SO MUCH.
>> THE INITIATIVE IS A PRODUCT
OF [INDISCERNIBLE] BANERJEE WHO
IS IN THE INSTITUTE AND HE HAS
BEEN DOGGED IN SUPPORT FOR OUR
TRAINEES TO GO THERE AND TO BE
HONEST IT WAS NOT SOMETHING I
WAS AWARE OF AT ALL UNTIL A
COUPLE YEARS AGO AND THEN WE
SORT OF INNEDLY AND WITH THE
OFFICE OF HEALTH EQUITY WE
REALIZE THAT THEREYA KNOW
OPPORTUNITY THERE TO HAVE THIS
AMBASSADOR'S PROGRAM WHERE WE'RE
GOING TO, YOU KNOW ARM PEOPLE
WITH THE INFORMATION AND LET
THEM KNOW, ABOUT THE
OPPORTUNITIES ARE AT THE NICHD,
SO AS I SAID, THAT'S THE FIRST
OF I THINK A NUMBER OF THEM AND
SOCIETY MEETINGS OR MEETINGS
WE'RE GOING TO START TARGETED,
BUT, YEAH, I APPRECIATE YOU
SAYING THAT BECAUSE I THINK IT'S
GOING TO BE VERY SPECIAL FOR US,
MOVING FORWARD.
THANK YOU.
>> I HAVE A QUESTION, SO OUT OF
YOUR 254 TRAINEES 137 POST A
JOB.
THAT'S QUITE A LARGE GROUP.
I WONDER IF YOU HAVE ANY
INFORMATION ABOUT THE OUTCOMES
BECAUSE SOME OF THE CHAL EVENLGS
WE HAVE EXTRAMURALLY TO TRAIN
THEM TO DO RESEARCH WHETHER IT'S
IN ACADEMIA OR INDUSTRY IT WAS
IN THERE TO ATTAIN THEM, I'M
WONDERING IF YOU ARE SEEING THE
SAME TREND?
>> YES, WHAT WE ARE EXPERIENCING
IS REALLY NOT ANY DIFFERENT THAN
I THINK DPLOABALLY IS BEING--NOT
JUST WITHIN THE UNITED STATES
AUTOEVERYBODY YOU TALK TO AND MY
BIGGEST ISSUE IS TALKING WITH
INVESTIGATORS AND ESPECIALLY OUR
TENURED TRACK INVESTIGATORS IS
THE NUMBER OF PEOPLE WHO ARE ARK
MRIING FOR POST DOC POSITIONS IS
DRAMATICALLY LOW, DANGEROUSLY
LOW AND OF COURSE WE SEE
OURSELVES AS VALUABLE TRAINING
OPPORTUNITY AND ENCOURAGE AS
MANY PEOPLE AS POSSIBLE TO COME
THROUGH THE PIPELINE.
NOW WE HAVE 200 POST DOCS AT ANY
1 PARTICULAR TIME AND MUCH AS
THE SAME AS EVERYBODY IN
ACADEMIA REALIZE
[INDISCERNIBLE], THE END GOAL IS
NOT TO GET EVERYBODY TO BE A PI.
THAT SHIP SAILED A LONG TIME
AGO, AND WE HAVE TO CHANGE AS
DIANEA SAID EARLIER ON, WE HAVE
CHANGE WHAT OUR OUTCOME
EXPECTATIONS ARE AND SO 1 OF THE
THINGS WE DID IN THE OFFICE OF
EDUCATION THIS YEAR WAS TO OFFER
AS MUCH EXPOSURE TO INDUSTRY OR
OPPORTUNITIES THAT PRESENT
THEMSELVES AROUND THIS AREA.
NOW THIS AREA IS A UNIQUE AREA
BECAUSE IT'S A LARGE BIOTECH
COMPANY, YOU KNOW VISIBLY,
THERE'S A LOT OF GREAT BIOTECH
COMPANIES HERE AND OPPORTUNITIES
HERE AND I JUST THINK THAT WE
HAVE TO BE MINDFUL THAT OUR
WORLD IS CHANGING YOU KNOW IT'S
NOT ENOUGH TO PAY FOLK WHAT IS
WE WANT TO PAY THEM, WE WANT TO
HAVE A WORLD THAT HAS POST DOCS
IN OUR LABS AND THAT WILL COME
AT SOME KIND OF COST TO US AND I
THINK YOU KNOW WE NEED TO THINK
ABOUT HOW TO REDEFINE WHAT WE
EXPECT FROM OUR POST DOCS.
YOU CAN'T GROUP THEM INTO 4 OR 5
POSITIONS WHERE THEY'RE WORKING
60 OR 70 HOURS WHEN THEIR
FRIENDS ARE GOING OFF TO
INDUSTRY AND EARNING TRIPLE
DIGET SALARIES SO IT'S JUST AN
UNREALISTIC SITUATION FOR ALL OF
US AND I THINK EVERYBODY WHO'S
THINKING ABOUT THESE THINGS IS
THINKING THE SAME WAY, I'M NOT
THINK BEING THIS IN ANY
DIFFERENT WAY THAN MANY PEOPLE
ARE THINKING, WE NEED TO BE
IMAGINATIVE, WE NEED TO BE
ENCLUESIVE, SUPPORTIVE AND YOU
KNOW WE HAVE AN UNREASONABLE
NUMBER OF WOMEN SCIENTIST
DROPPING OUT OF SCIENCE BECAUSE
THE LIGHT IS TOO DIFFICULT AT
THAT STAGE OF THEIR LIVES, AND
WE NEED TO BE MIEBDFUL THAT WE
NEED TO SUPPORT THAT BETTER.
SO I DON'T THINK WE'RE
EXPERIENCING ANYTHING THAT'S
DIFFERENT THAN ANYBODY ELSE'S
WE'RE JUST TRYING TO DO OUR BEST
TO SUPPORT THIS TRAIN TRAINING
OPPORTUNITY AS BEING MIEBDFUL OF
THE NEEDS OF THAT POPULATION.
OKAY, THANK YOU VERY MUCH.
[ APPLAUSE ]
>> THANK YOU SO MUCH CHRIS FOR
THE TERRIFIC SUMMARY OF THE LAST
YEAR OF THE DIR.
AND NOW, KORLS ON HERE, HERE
OKAY, IT'S A PLEASURE TO
INTRODUCE DR. CARLOS FERREIRA,
WHO WILL SHARE A SCIENTIFIC
PRESENTATION WITH US TODAY.
DR. FERREIRA WILL BE YOINING
NICHD'S INTRAMURAL PROGRAM THIS
FALL COMING FROM THE INTRAMURAL
PROGRAM FROM THE NATIONAL HUMAN
GENOME RESEARCH INSTITUTE EMPLOY
HE IS CURRENTLY STAFF CLINICIAN
AND HEAD OFICLETAL GENOMICS UNIT
IN THE METABOLIC MEDICINE BRANCH
AT NHGRI.
DR. FERREIRA USING A
TRANSLATIONAL APPROACH STUDY A
GROUP OF SKELETAL DISORDERS.
HE RECEIVED HIS H. D. FROM THE
NATIONAL UNIVERSITY OF ASENSION
IN CHILE AND AFTER DOING A TOUR
AT A MEDICAL CENTER CAME TO JOHN
HOPKINS AS CONSORTIUM AS A
FELLOW CLINICAL GENETICS.
IN 2019 HE WAS APPOINTED TO THE
PHYSICIAN SCIENTIST DEVELOPMENT
PROGRAM AT NHGRI.
HIS TALK TODAY IS ENTITLED
GENOMICS, MODELS AND THERAPEUTIC
TARGETS OF GENETIC SKELETAL
DISORDERS, WELCOME CARLOS.
>> THANK YOU SO MUCH FOR THE
KIND INTRODUCTION AND THE
INVITATION AND AS CAN YOU SEE IN
THE TITHES SLIDE, I WILL TALK
ABOUT GENOMICS, MODELS AND ALSO
THERAPIES WE'RE TRYING TO
INVESTIGATE FOR PATIENTS THAT
HAVE SKELETAL DISORDERS OF A
GENETIC ORIGIN, AND THIS WOULD
BE THE OUTLINE OF A TALK FOR THE
NEXT 25 MINUTES OR SO, I WILL
GIVE YOU A BRIEF BACKGROUND
ABOUT THE STUDIES THAT ARE DONE
IN MY LAB AND FORMULATE NHGRI
AND NICHD AND ALSO AN EXAMPLE OF
THE 2 MAIN AREAS OF FOCUS FOR MY
LAB, THOSE BEING DISORDERS OF
UNKNOWN CAUSE, MEANING SKELETAL
DIFFERENCES THAT WE WILL KNOW
THE ETIOLOGY FOR MEANING TREVOR
DISEASE AND SECOND DISORDERS OF
[INDISCERNIBLE] BIOLOGY, IT'S
THE MAIN MINERAL IN YOUR BONES,
SO WITHOUT FURTHER ADIEU THIS IS
1 OF MAIN 3 AIMS OF MY LAB AND
THAT IS TO CONDUCK NATURAL
HISTORY STUDIES TO DISCOVER NEW
DISEASE GENE ASSOCIATIONS ON THE
1 HAND BUT ALSO TO DEFINE THE
CLINICAL SPECTRUM OF DISEASE
WITH SKELETAL DISORDERS, TO
THIS, WE TRIED TO UNDERSTAND
MECHANISMS OF HOW BONE
DIFFERENCES TAKE PLACE BY USING
OR ESTABLISHING ANIMAL MODELS
AND FINALLY, TRYING TO DEVELOP
NEW THERAPEUTIC TARGETS THAT WE
CAN FIRST TRY IN THE MODELS WE
ESTABLISH AND IF THEY SHOW
PROMISE LATER BRING THEM TO THE
CLINIC AT THE PATIENT'S
KD--SALLY WHA. --[INDISCERNIBLE.
SO EVERYTHING WE DO IS AROUND
THE NATURAL HISTORY STUDY AND AS
OF 3 YEARS AGO, WHEN WE WANT TO
FIND PATIENTS FOR ETIOLOGY OR
CAUSE OF GENETIC DISORDS WE
START BY COLLECTING BONE SAMPLES
AND DOING FANCY SEQUENCING
KECKNOLOGY TO FIND A COMMON
GENE.
WHEN WE DO DEEP PHENOTYPING AND
COLLABORATE AROUND THE CLINICAL
CENTER IN DOING SO WE TRY TO
GAIN NEW INSIGHTS WE TRY TO
PROBE IN OUR ANIMAL MODELS.
WE COLLECT PLASMA AND URINE WE
CAN BIOBANK IN ORDER TO TRY TO
FIND BIEW BIOMARKERS LATER ON
AND WE ALSO ARE A HUGE DATABASE
OF IMAGING STUDIES WE CAN USE
FOR SCORES THAT WE CAN USE FOR
CLINICAL END POINTS AND FUTURE
CLINICAL TRIALS.
SO THERE'S A LARGE ORDER OF
SKELETAL STUDIES BUT WE FOCUS ON
2 AREAS THOSE BEING SKELETAL
DISORDERS FOR WHICH CAUSE IS
UNKNOWN, AND SECOND SKELETAL
DISORDERS BY [INDISCERNIBLE] FOR
IMPORTANT MINERAL IN YOUR BONE.
I WILL START BY GIVING DISORDERS
OF UNKNOWN CAUSE.
THERE ARE 34 OF THEM KNOWN RIGHT
NOW.
THIS IS ACTUALLY A DPROWP OF
AROUND 20 EX PERS IN THE WORLD
THAT GET TOGETHER EVERY FEW
YEARS TO RELEASE THE OFFICIAL
CLASSIFICATION OF SKELETAL
DISORDERS AND AS YOU CAN SEE,
THERE WERE 34 UNKNOWN DISORDYS,
THEY HAVE VERY RADIO GRAPHIC
CHANGE ANDS CLINICAL CHANGES BUT
SOME REASON OR ANOTHER WE'VE
NEVER BEEN ABLE TO FIND THE
CORPORATE YEEN.
SO I SHOULD SAY IN THE INTERIM
OF 4 YEARS BETWEEN THE LAST
ETIOLOGY 2019 AND THE 1 LAST
YEAR, THERE WERE OVER A HUNDRED
NEW DISORDERS THAT WERE
DESCRIBED AND THESE WERE NOT THE
WELL CHARACTERIZED DISORDERS,
BUT COMPLETELY NOVEL CONDITIONS
WE DIDN'T KNOW EXISTED BEFORE
THAT THOU WE KNOW ARE CAUSED BY
SCIENTIFIC GENE CHANGES LEADING
TO SKELETAL DIFFERENCES.
THIS IS A PIE CHART FROM FROM 1
OF OUR COLLABORATORS IN WHICH
YOU SEE 150 PATIENTS USHED WENT
SOME SEQUENCING TECHNOLOGY AND
SUCH AS GENOME SEQUENCING AND
THE EXAMS.
DNA STUDIES AND NO 1 COULD FIND
THE UNDERLYING YEEN AND THERE'S
STILL A LOT OF ROOM FOR FINDING
OR UNDERSTANDING THE BONE AND
BIOLOGY AND BY DOING SO, TRYING
TO IMAIN NEW INSIGHT SPOS
SKELETAL PHYSIOLOGY AT LARGE.
SO THIS IS THE OTHER OR SECOND
AREA OF RESEARCH FOR MY LAB.
PHOSPHATE IS REGULATE INDEED
YOUR BODY BY BONE CELLS AND IT
DOES 2 MAIN THINGS, 1 IS TELLS
YOUR KIDNEYS NOT TO
[INDISCERNIBLE].
THE KIDNEY HAS 2 MAIN FUNCTION,
FILTER AND FUNCTIONS, BUT SO YOU
FILTER ABOUT 180 LITERS OF BLOOD
EACH DAY BUT I ONLY 2 DUCE 2
LITERS OF URINE AND THAT'S
BECAUSE THE VAST MAJORITY OF
EVERYTHING FILTERED IS
REABSORBED AND PHOSPHATE 99% OF
IT IS ABSORBED BY THE TRANSPORT
PORTERS HERE AND THIS TELLS THIS
NOT TO BE EXPRESSED SO SUDDENLY
YOU START WASTING PHOSPHATE IN
THE URINE AND YOU DON'T HAVE IT
NEEDED TO PERFORM BONE MINERAL
SO HAVE YOU SOMETHING CALLED
RICKETS.
AND THE SECOND HIT IS BY
DECRETESSING ABSORPTION OF
PHOSPHATE IN THE GUT, SO AGAIN
HAVE YOU THIS HIDDEN MECHANISM
BY WHICH PHOSPHATE LEVELS GO
DOWN, AND THIS IS ACTUALLY THE
MAIN HORMONE REGULATOR OF
PHOSPHATE HOMEOSTASIS OR BALANCE
IN YOUR BODY.
SO THAT'S THE BACKGROUND AND
THIS IS AN EXAMPLE OF A DEC OF
AN UNKNOWN CAUSE FOR WHICH WE
RECENTLY FOUND THE GENE.
IT'S CALLED TREVOR DISEASE AND
AS CAN YOU SEE IN THIS SLIDE,
IT'S ASSOCIATED WITH OVERGROWTH
OF SPECIFIC PARTS OF YOUR BONE.
THAT'S CALLED THE EPIGHT SIS,
IT'S THE PART THAT MAKES THE
JOINT OR END OF THE LONG BONE.
SO YOU CAN SEE IF YOU HAVE
OVERGROWTH, YOU HAVE RESTRICTED
RANGE OF MOTION OR CONTRACTURES
HERE, YOU CAN SEE CONTRACTURES
HERE OF A KNEE OR ANKLE IN THIS
YOUNG 12 YEAR-OLD GIRL AND WHEN
GIVE YOU A BIOPSY YOU CAN SEE
THAT--WHAT YOU CAN SEE IS THAT
THAT OVERGROWTH IS CAUSED BY
BOTH CARTILAGE AND BONE, SO BOTH
OF THOSE TISSUES ARE ACTUALLY
FLUID OR YOU FIND MORE OF THEM
THAN YOU SHOULD.
THIS IS ANOTHER EXAMPLE OF AN 8
YEAR-OLD BOY WITH TREVOR
DISEASE, CAN YOU SEE THE
OVERGROWTH AROUND THE HIP JOINTS
ON THE LEFT SIDE, THE KNEE JOIPT
ALSO ON THE LEFT SIDE AND
FINALLY SINCE THE RECENT CASE WE
SAW BACK IN NOVEMBER, SHOWING
AGAIN, THE OVERGROWTH AROUND THE
LEFT KNEE IN THIS YOUNG WOMAN.
ANOTHER THING YOU CAN SEE IS
THAT THIS CAN CAUSE DEVIATION OR
MISALIGNMENT OF THE JOINTS,
THESE DEFORMITIES CAN BE
ACCOMPANIED BY CONTRACTORS, BUT
ALSO BY PAIN AND THESE HAVE
DECREASED QUALITY OF LIFE FROM
THIS DEC.
SO WE HAD THE HYPOTHESIS THAT
THIS WAS A MOSAIC DISORDERS.
KIND OF LIKE THE [INDISCERNIBLE]
WHERE YOU HAVE DIFFERENT CELLS
HAVING DIFFERENT THINGS, AND THE
REASONS WHY WE BELIEVE THAT THIS
WAS THE MOSAIC DISORDER IS 1
BECAUSE AS YOU SAW IN THE PRIOR
SLIDE THESE LESIONS DON'T
TYPICALLY EFFECT EVERY SINGLE
JOIBT IN YOUR BODY BUT VERY
SPECIFIC LIMBS IN THE SAMPLES I
SHOWED YOU, THEY WERE ALL IN THE
LEFT LIMB, LEFT LOWER EXTREMITY
SPECIFICALLY BECAUSE THERE'S
NEVER BEEN A FAMILIAL CASE.
WHAT I MEAN BY THAT IS DISEASE
HAS BEEN KNOWN FOR ABOUT A
CENTURY AND THERE'S NEVER BEEN A
SINGLE CASE IN WHICH 2 SIBLINGS
IN THE SAME FAMILY HAVE THE DEC,
THAT MEANS WHATEVER GENETIC
CHANGE THAT WAS CAUSING THIS
CONDITION IT COULD NOT HAVE BEEN
INHERITED FROM THE MOM OR DAD OR
WE WOULD HAVE SEEN MORE
FAMILIES.
THERE WERE MORE THAN 1 AFFECTED
INDIVIDUAL.
AND THE THIRD IS THAT THERE'S
ALSO CASE REPORTS OF IESHES
DENTICAL TWINS THAT SHOULD HAVE
IESHES DENTICAL DNA SEQUENCE
THROUGHOUT THEIR CELLS DHS IN
WHICH 1 PATIENT HAD TREVOR DEC
AND THE SIBLING DID NOT HAVE THE
IDENTICAL TWIN DID NOT HAVE IT
WHICH TELLS YOU THAT WHATEVER
GENETIC CHANGE IS CAUSING THIS
CONDITION, TREVOR DISEASE, IT
HAPPENS AFTER CONCEPTION,
MEANING AFTER THE SPERM CELL AND
THE EGG CELL GOT TOGETHER AND
THE AS THE CELLS AND EMBRYO WERE
DIVIDING THE SPECIFIC CELLS IN
THAT PARTICULAR LIMB, ARE THE
CELLS THAT GIVE RISE TO IT IN
THE LOWER EXTREMITY, AND CARRY
THAT FOR DEVELOPMENT FOR A
PARTICULAR GENETIC CHANGE
SPORADICALLY.
SO INERED ONER TO PROVE THE
HYPOTHESIS, WE DIDN'T BASICALLY
SEQUENCING OF THE DNA OBTAINED
FROM BONE SASM ELS OR BONE
BIOPSIES FROM PATIENTS HERE AT
THE NIH AND COMPARE THAT DNA
SEQUENCE THROUGH DNA FROM THE
BLOOD, USE THIS MACHINE LEARNING
APPROACH IN ORDER TO AGAIN
COMPARE MILLIONS OF CHANGES SEEN
IN BOTH TISSUES AND ENDED UP
FINDING THE CORPORATE YEEN, AND
HAVING THE SAME CHANGE, NO SIDE
CASES, THIS WAS JUST AN EXAMPLE
OF QUANTIFYING THE AMOUNT OF
GENETIC CHANGES IN THE LESION,
SO, IS THIS SOMETHING CALLED
DIGITAL PC R AND ALL IT DOES IS
YOU'RE INCORPORATING DNA
MOLECULES INTO SPECIFIC
DROPLETS, EACH DROPLET HAS 1 DNA
MOLECULE AND EACH DROPLET WILL
REPRESENT BASICALLY EITHER HUMAN
COPY OR WILD-TYPE COPY AND YOU
CAN TELL THE NUMBER OF TROP
DROPLETS THAT HAVE THE MUTATION
VERSUS TOTAL NUMBER OF DROP
WILLS.
HERE WE CAN SEE THE ALLELE
FRACTURE WAS ABOUT 10% GIVE OR
TAKE THE BONE LESION.
IT IS ACTUALLY A PATIENT FOR WE
I SHOWED THE HIP X-RAYS EARLIER
TODAY.
THESE RUN FROM THE PRIMARY BONE
LESION AND YOU CAN SEE THE
PERMEATION MORE OR LESS AT 17%
AND YOU SEE COMPLETE ABSENCE OF
MUTATION IN THE BLOOD WHICH IS
WHAT WE EXPECT ONLY IN THE BONE
LESION, HOW IT ABNORMALITIES
NORM ATITY IN THE X-RAYS ARE THE
1S THAT ARE CARRYING THIS
PARTICULAR GENETIC CHANGE.
HAD IS A BONE BIOPSY, 1 OF THESE
LESIONS AND YOU CAN SEE HERE IN
BROWN, THERE ARE MUTANT CELLS
THAT ANTIBODIES THAT RECOGNIZE
THE MUTANT PROTEIN AND YOU SEE
THAT 20% IS ON THE PROMO CELLS
HERE IN THE BONE LESION, STAIN
FOR THE MUTANT PROTEIN, THE
OTHERS HAVE A NORMAL GENETIC
CONSTITUTION.
AS I MENTIONED EARLIER, 1 OF THE
GOALS OF THE LAB IS TO ACTUALLY
TART WITH THE PATIENT BUT
EVENTUALLY MORE ANIMAL MODELS WE
CAN USE TO TRY TO PROBE
MECHANISMS ON TEASE EMPLOY SO I
MENTIONED EARLIER THAT OUR
PATIENTS HAVE ISSUES WITH
AMBUTALATION OR MOBILITY BECAUSE
OF THIS CONSTRACTURE, AND WE'VE
ALSO SEEN THIS IN THE MOUSE
MODEL.
THIS IS A PRIMITIVE STUDY, YOU
ARE PUTTING INK IN THE PAWS OF
THE MICE, GREEN FOR THE BACK,
AND BLACK IN THE FRONT PAW ANDS
THIS IS WHAT AMBUTALATION LOOKS
LIKE IN PREMUTANT MICE, CAN YOU
SEE THEY'RE DIRECTING THEIR FEET
AND SHOWING ALSO MYTHICAL HERE
NORMAL APPLICATIONS BLAIGZ IN
THE MOUSE MODEL.
THIS IS ANOTHER STUDY WHERE
WE'RE DOING A FLUORESCENT TAG
THAT BIEBDS TO MINERAL IN THE
BONE SO WHENEVER YOU SEE
FLUORESCENCE, THAT MEANS IT'S
DEPOSITED AND YOU SEE MUCH MORE
DEPOSITED IN THE MUTANT COMPARED
TO THE WILD-TYPE MOUSE AND HAD
IS JUST ANOTHER EXAMPLE OF THE
SAME.
THERE'S MORE BONE BEING
DEPOSITED IN THE MUTANT MOUSE
COMPARED TO CONTROL 1.
YOU CAN CLOSE QUANTIFY THAT
OBLIGATIONS YECTIVELY AND AGAIN
THERE'S MORE BONE IN THE MUTANT
MOUSE BUT IN THE WILD-TYPE 1 AND
IN HERE, I MENTIONED EARLIER
THAT IF YOU CHARACTERIZED BY
OVERGROWTH, AGAIN THE PORT OF
BONE THAT MAKES YOUR JOINTS SO
YOU CAN SEGMENT THAT AND
CALCULATE THAT, WITH THE 3D
VOLUME OF THIS PARTICULAR TEASE,
IT'S THE DEC OF THE THIGH BONE
THAT MEETS YOUR KNEE JOINT AND
THIS IS THE SEGMENT THAT
CONNECTS THE BONE, ALL OF THAT
IS MARKEDLY INCREASED AGAIN
RECAPITULATE EXACTLY WHAT WE SEE
IN HUMAN PATIENTS WITH TREVOR
DISEASE.
SO THERE'S MORE DATA I'M NOT
SHOWING YOU FOR EXAMPLE, WE HAVE
SHOWN OTHERS IN INCREASED
PROLIFERATION OF CELLS OF PAIN
FROM THIS MOUSE LESION AND NOW
WE HAVE THERAPEUTIC TARGETS WE
HOPE TO TRY IN OUR MUTANT MICE
TO SEE IF WE CAN MAKE A
DIFFERENCE OR IMPROVE THE
SKELETAL DEFENSES WE SEE IN THE
MOUSE AND EVENTUALLY SEE THOSE
PATIENTS IN THE CLINIC, SO NOW
WE WILL GIVE YOU AN FINISH 1 AND
A SECOND GROUP OF DISORDERS
STUDIED MY MY LAB, MAINLY THE
EMPP1 DEFICIENCY, AND IT'S
EXPRESSED IN THE CELL SURFACE
AND IT BREAKS DOWN ATP, AND IT
THINKS OF IT HAS SOMETHING AS
ENERGY MOLECULE IN THE
MITOCHONDRIA BUT IT'S ALSO TRUE,
AND IT'S ALSO AN ACTIVE SIGNAL
AND MOLECULE.
IN FACT, MAY BE THE ONLY MAIN
SOURCE OF BOTH PHOSPHATE IN THE
BLOOD, OR CIRCULATING
SYSTEMICALLY, BUT ALSO
PARAPHOSPHATE THAT INVADE THE
MICROENVIRONMENT SUCH AS CELLS
WITH THE PATHOGEN MUSCLE CELLS
AND ARTERIES AND BONE CELLS IN
THE SKELETON.
AND IT DOES PLAY AN IMPORTANT
ROLE IN MINERALIZATION BECAUSE
IT ACTS AS A TOXIN FOR HYDROXY
APPETITE SO IT'S THE MAIN
MINERAL IN THE BONE WHEN YOU
MEASURE, YOU HAVE BONE MARROW
DENSITY OR THE AMOUNT OF HYDROXY
IN YOUR BONES SO THIS IS MANAGE
BUT CHEMMESTRY AND IT
ABNORMALITIES SORPS THROUGH
THURE FASOF THE CRYSTAL
BASICALLY DISRUPTS AND IT'S VERY
IMPORTANT INHIBITOR OF HYDROXY
APPLICATIONSA TIGHT AND IT'S
TINY AMOUNTS OF PHOSPHATE TO
COMPLETELY PREVENT THE
DEPRIVATION SESSION OF THIS
MINERAL.
WHEN YOU DON'T HAVE THE
PHOSPHATE IN AREAS YOU SHOULDN'T
HAVE IT, THIS IS LIKE WHAT YOU
CAN SEE HERE, THIS IS A 4 MONTH
OLD BABY WHO HAD A 3D
RECONSTRUCTION, SHOWING A LOT OF
MINERALS BEING DEPOSITED INSIDE
OF THE ARTERIES THROUGHOUT.
IT WAS NOT CONTRAST BY THIS,
THIS IS A NONCONTRASTING SCREEN.
YOU CAN SEE THE CALCIUM
DEPOSITED AND THIS IS THE VESSEL
THAT SURROUNDS THE HEART OF THE
CROWN OR PROFUSE OF THE HEART.
AND THE OTHER THING YOU CAN SEE
HERE THAT YOU DON'T JUST HAVE
CALCIFICATION BUT YOU ALSO HAVE
THICKENING OF THE HEART MUSCLE.
YOU CAN SEE THE WIDE LINE ON THE
BOTTOM RIGHT BUT HERE YOU SEE
IT'S CLOGGING ALMOST ALL ARTERY
LEADING TO DECREASED LUMEN OR
DECREASED BLOOD FOR THAT, SO,
THIS PARTICULAR PHENOTYPE IS
CALLED GENERALIZED
ARTERIALICALSIFICATION OF
INFANCY OR GACI FOR SHORT, IT'S
UNFORTUNATELY HIGH MORTALITY IN
BABIES SO INFANTS, 40% OF BABIES
WILL DIE FROM THIS DISEASE
WITHIN THE FIRST 6 MONTHS OF
LIFE OR SO AND EVEN IN MAISHT
WHO IS EPPED END UP SURVIVING
THIS DISEASE, THEY WILL DEVELOP
RICKETS WHICH AGAIN IS 1 OF THE
MAIN AREAS OF RESEARCH IN MY
LAB.
WHAT WE DO KNOW, THIS IS
ACTUALLY A PATIENT, I THINK SHE
WAS 9 YEARS OLD AND SHE IS
FORMING CHARACTERISTICS OF
RICKETS, THEY CAN HAVE SHORT
STATURE AND BONE PAIN.
YOU DON'T HAVE ENOUGH MEN MALIN
THE BONE AND THUS DEVELOP THIS
COMPLICATION EMPLOY WE KNOW IT'S
ACTIVATED BY THE FGF23, AND IT'S
DRIVING AN EXCESSIVE AMOUNT OF
PHOSPHATE WASTE INDEED THE URINE
AND WOO DON'T UNDERSTAND HOW THE
EFFICIENT OF THE ENPP1 LEADS TO
THE RECESSIVE ARHR2.
AND WE CHARACTERIZE THE RATE OF
ONSET OR DECLINE IN THE RATE OF
PHOSPHATE LEVELS, BEING BORN
WITH NORMAL FOSTER NURSED FOCUS
ON THE LEVELS THAT DECLINE OVER
THE FIRST 3 YEARS OF LIFE AND IN
FACT, MOST PATIENTS WILL
EVENTUALLY DEVELOP RICKETS.
YOU CAN SEE HERE BY 2 AGE, 2
YEARS OF AGE OR SO, ABOUT 20% OF
THE PATES WOULD HAVE DEVELOPED
RICKET ANDS BY 7 YEARS OF AGE OR
SO, HALF OF THEM DEVELOP RICKETS
AND IT'S REALLY ISSUE THE
QUESTION IS NOT IF THEY'RE
DEVELOPING RICKYINGS BUT MORE OR
LESS WHEN THAT WILL HAPPEN.
SO I MENTIONED THE DISEASE IS
CAUSED BY A LACK OF FOSTER
NURSEDINATE WASTED IN THE URINE.
THE WAY TO TREAT THE
DISCIPLINARY FORMITYS IS TO GIVE
PHOSPHATE BACK, AND TYPICALLY
MULTIPLE TYPES A DAY BECAUSE OF
ROOTS SHORT HALF LIFE, BUT WHEN
YOU DO THAT YOU ARE INCREASING
PHOSPHATE WASTING IN THE URINE,
IT WILL BIND TO CALCIUM AND THE
CRYSTAL IN THE KIDNEY, SO, ON
THE 1 HAND WE'RE TREATING OR
PREVENTING COMPLICATIONS FROM
RICKETS, PAIN STATURE AND
DEFORMITY AND ON THE OTHER HAND
WE'RE CAUSING SECONDARY SIDE
EVENS OR COMPLIKAIGS BY GIVING
THE PATIENTS TREATMENT.
THERE'S STILL A THIRD PRESENT SO
I MENTIONED THE CARDIOVASCULAR
THICKENING LATER LIFE, AND
THERE'S A THIRD DISCALLED PSC,
WHICH IS SKIN CHANGES, HERE'S A
10 YEAR-OLD BY WITH SKIN, RASH
IN THE NECK.
IT CAN ALSO CAUSE RETINAL
ISSUES, HAD PLIENDNESS IN THE
RIGHT EYE BECAUSE OF THIS.
SO AGAIN, THERE'S STILL ANOTHER
COMPLICATION FROM THE SCEEZ
CALLED [INDISCERNIBLE], IT'S THE
CALCIFICATION OF THE SITES WHERE
THE LIGAMILLIOS AND TENDONS
ATTACHING TO THE JOINTS SO THIS
IS THE SITE WHERE THE CALF
MUSCLE IS ATTACHING TO YOUR
HE'LL, THIS IS THE ALIBLE,
CALCIFICATION AROUND THIS NUMBER
IN THE NECK.
AND UNFORTUNATELY THIS IS NOT
JUST AN IMAGING FINDING BUT IT'S
ACTUALLY ASSOCIATE WIDE A LOT OF
PAIN, THIS IS A COMPLICATION
THAT DEVELOPED IN THE ADULTHOOD.
PAIN IS NOT RELIEVED BY GIVING
[INDISCERNIBLE] OR REGULAR
ANTIPAIN MEDICATION AND IT'S
ASSOCIATED WITH MODERATE AMOUNT
OF IMPAIRMENT IN THEIR LIFE, IN
AN ATTEMPT TO GET--OVER THE
PATIENT'S LIFETIME.
SO, AGAIN IT'S A DISEASE WITH
MULTIPLE DIFFERENT
PRESENTATIONS,
MULTIDISSEMESTERRIC, IN INFANTS
ASSOCIATE WIDE SOMETHING CALLED
GACI, AND LATER CAN CAUSE RICKET
ANDS PSC, AND REALLY IN THE
FIRST YEARS OF LIFE, THE
MORBIDITY OR MORTALITY REALLY
DUE TO CARDIOVASCULAR
INVOLVEMENT OR ARTERY THICKENING
AND CALCIFICATION, WHILE IN
LATER LIFE IT'S REALLY A
SKELETAL COMPLICATION THAT ARE
DRIVING THE PAIN CAUSE OR MAIN
MORBIDITY OF THIS DISEASE.
THIS IS UNFORTUNATELY, DESPITE
HIGH MORTALITY AND MORBIDITY.
THERE'S NO CLEAR TREATMENT.
THIS IS THE LARGEST COHORT OF
PATIENTS KNOWN TO DATE WITH OVER
200 PATIENTS OR CAN YOU SEE HERE
IS THAT THIS IS WHERE WE SEE THE
PHOSPHATE IN THE BLACK LINE HAD
THIS RATE OF SURVIVAL WHILE
PATIENT WHO IS DID NOT RECEIVE
THIS HAD THIS RATE OF SURVIVAL
IN THE RED CURVE, SOLID CURVE
THERE, APPEARS TO BE A TREND
BUT UNFORT MATILY, THE CASH
LINES OVERLAPPING WITH EACH
OTHER WHICH MEANS THIS TREND IS
NOT REALLY REACHED STATISTICAL
SIGNIFICANCE, SO UNFORTUNATELY
HAVING HIGH MORTALITY AND HIGH
MORBIDITY.
WE DON'T REALLY HAVE AN
EFFECTIVE TREATMENT FOR TREAT
THANKSGIVING PARTICULAR
CONDITION.
SO BASICALLY THE NEXT QUESTION,
WHAT CAN WE DO FOR OUR PATIENTS,
THIS IS A CLOSE COLLABORATOR, HE
USED TO BE A POST DOC AT THE NIH
MANY YEARS AGO.
WHEN HE WAS HERE HE WAS STUDYING
EMPP2, WHICH AS YOU MIGHT INFER
IS A HIGH DEGREE OF SIMILARITY
TO THE EMPP1, THE MAIN
DIFFERENCE IS THAT EMPP2 IS NOT
BOUND TO THE PLASMA MEMBRANE OF
THE CELLS BUT IT'S SOLUBLE.
IT'S CIRCULATING IN THE BLOOD.
SO HE INTRODUCED THE CUT SITE
FROM THE EMPP2, TO THE 1 TO MAKE
IT SOLUBLE AND HE ADDED FC
FRAGMENT TO INCREASE HALF LIFE
FOR THE RECOMBIN ANT DRUG THAT
WAS MADE AND HE GIVE IT ON TO
THE MICE AND YOU CAN SEE HERE,
THIS IS OUR MUTANT MICE THAT ARE
MISSING EMPP1, STAINED WITH THE
LUTHERAN RED, AND CALCIUM RED,
AND UC-RED HERE IN CALCIUM, AND
THEN THESE ARE THE MICE THAT WE
SEE, OR MISSING AND WE SEE
RECEIVE ENZYME REPLACEMENT
THERAPY, AND AS CAN YOU SEE,
THERE'S NOTHING ALONGSIDE OR THE
ARTERY IN THAT PARTICULAR MOUSE
MODEL, BUT DOES THAT TRANSLATE
INTO ANY SURVIVAL BENEFITS AND
THE ANSWER IS YES, THESE ARE
MUTANT MICE MISSING IN THE EMPP1
AND AS YOU CAN SEE ALL OF THEM
ABIDE BY 55 DAYS OF AGE WHILE
HERE IN RED, YOU SEE SURVIVAL OF
EVERYTHING MUTANT MICE AND THE
THERAPY, SO TBEANING, SHOWING
NOT JUST A STRUCTURAL BUT ALSO
FUNCTIONAL BENEFIT FROM THIS
TREATMENT.
SO THIS IS WORK WE DID IN
COLLABORATION WITH HIM, AS YOU
CAN SEE THIS IS THE MUTANT MICE
TREATED WITH EMPP, YOU CAN SEE
THIS IS TREATED AND IT'S STAINED
HERE IN BLACK SO THIS IS EXTRA
MINERAL UP IN THE KIDNEYS AND
WHEN YOU HAVE A MUTANT MICE
MISSING THIS, AND THIS
REPLACEMENT THERAPY, YOU HAVE
PREVENTION OF IT AND CAN YOU
QUANTIFY AND WE ALL SEE
IMPROVEMENT OF KIDNEY FUNCTION,
NOT JUST IN KIDNEY STRUCTURE BUT
ALSO IN THE KIDNEY, BY
MENTIONING DIFFERENT TALKS AND
BY THE KIDNEY.
I MENTIONED THE MAIN FOCUS AGAIN
IS BONE IN MY LAB SO THIS THE
AMOUNT OF BONE IN NORMAL MOUSE,
AND YOU CAN SEE THIS LOOKS MUCH
MORE POROUS, SO THIS IS LESS
BONE IN THE MUTANT MICE THAT DID
NOT RECEIVE ANY TREATMENT, OR
JUST RECEIVE PLACEBO IS THIS IS
THE MICE IN THE MICE RECEIVING
ANTIREPOLICEMENT THERAPY WHEN
YOU QUANTIFY IT OBJECTIVELY, YOU
SEE NORMALIZATION OF BONE MASS,
AND THE TREATED MICE, THIS IS A
MEASUREMENT OF [INDISCERNIBLE],
SO NORMALLY YOUR BONE CELLS WILL
MAKE COLAIEN AND OTHER PROTEINS
AND THEN LIE DROKSY WILL
INCORPORATE INTO A PROTEIN SO
THIS REPRESENTS THE AMOUNT OF
MATRIX THAT HAPPENS, SEE YOU SEE
THERE'S MUCH MORE MINERALIZED
MATRIX IN THE MUTANT MICE, BUT
HAVEN'T BEEN TREATED AS COMPARED
TO A WILD-TYPE MICE WHILE THE
MUSEUM AT THAT POINT MICE HAVE
AN IMPROVEMENT IN BONE
MINERALIZATION, AND THIS IS JUST
A MEASURE OF BONE STRENGTH,
BASICALLY YOU'RE PUTTING A THIGH
BONE ACROSS 2-POINTS AND WE PUT
A 30-POINT, YOU APPLY PRESSURE
AND A THIRD POINT AND SEE HOW
MUCH WORK OR PRESSURE YOU NEED
TO APPLY IN ORDER TO BRING THAT
BONE AND YOU SEE THE BONES ARE
MUCH WEAKER OR YOU NEED TO APPLY
LESS PRESSURE TO BREAK THE BONE
IN THE SETTING OF EMPP1
DEFICIENCY WITH NO TREATMENT AND
THERE'S IMPROVEMENT IN THE
AMOUNT AND THE BONE STRENGTH OF
THIS AND REPLACEMENT THERAPY.
AND FINALLY I MENTIONED THAT
ADULT PATIENTS WITH EMPP1
DEFICIENCY EVENTUALLY DEVELOP
CALCIFICATION OF TENDONS AND
LIGAMENTS SO WE EVALUATED
WHETHER YOU CAN HAVE AN IMPACT
IN THIS PARTICULAR CAUSAL
MORBIDITY IN ADULT LIFE AND
THESE ARE ABOUT A THIRD OF MICE
BASICALLY HAVE NO CALCIIVES, THE
RED IS CALCIUM HERE AND THE
GREEN IS TENDONS SO THERE'S NO
CALCIUM IN THE THIRD, AND
THERE'S SOME IN ANOTHER THIRD
AND NO PREVENTION IN OUR THIRD
SO THERE'S PARTIAL PREVENTION OF
THE CALCIFICATION, AND SOMETHING
WE WILL QUANTIFY.
SO AGAIN WE'VE SEEN THE
REPLACEMENT THERAPY IS SHOWING
PROMISE WHEN IT COMES TO
PREVENTION OF BONE OF
OSTEOPOROSIS, AND MINERALIZATION
OF BONE, AND BONE STRENGTH
DECREASE, I SHOWED YOU
CARDIOVASCULAR AND MORTALITY
BENEFIT, SO ALL THIS LEADS THAT
IT MIGHT BE A GOOD THERAPY FOR
PATIENTS AND I SHOULD MENTION
THERE ARE CLINICAL TRIALS
ALREADY IN PLACE BOTH IN ADULTS
AND IN CHILDREN, IN FACT THE
ADULT TRIAL IS ALREADY FINISHING
ENROLLMENT RECREWMENT AND RIGHT
NOW THERE'S A CLINICAL TRIAL FOR
IN THIS DISEASE, OR RECEIVING
SOME REPLACEMENT THERAPY, SO
THERE'S HUMANS ALREADY RECEIVING
THIS KIND OF TREATMENT NOT JUST
A PRECLINICAL MODEL AND THIS
BEGS THE QUESTION, IF YOU CAN
GIVE ALL THIS MORBIDITY AND
MORTALITY CAN YOU DO THE SAME BY
DOING GENOMES TOGETHER AND GENE
THERAPY AND PRODUCING A TABLE
AMOUNT OF ENZYMES FOR INJECTIONS
AND WE'RE ACTUALLY COLLABORATING
WITH SOME EXPERTS IN ACADEMIA
AND DOING GENE THERAPY FOR EMPP1
DEFICIENCY.
SO THIS IS BASICALLY A SUMMARY
SLIDE AS YOU CAN SEE MY RESEARCH
PLAN FOCUSES ON RECRUITING PATES
WITH RARE SKELETAL CONDITIONS
AND TRYING TO UNDERSTAND THE
NATURE OF THEIR DIFFERENCES,
TRYING TO FIND NEW YEENS LEADING
TO SKELETAL DISORDERS AND AFTER
THAT, TRYING TO UNDERSTAND HOW
SKELETAL DIFFERENCES THEY PLAY
BY USING ANIMAL MODELS IN WHICH
WE CAN PROBE THESE MECHANISMS
TRYING TO COME UP WITH NEW
THERAPEUTIC TARGETS THAT WE WILL
FIRST TRY IN OUR ANIMAL MODELS
AND THE ANIMAL MODELS, BRING
THOSE BACK TO THE PATIENT'S
BEDSIDE SO THANK FUR LISTENING
AND I WILL BE HAPPY TO ANSWER
ANY QUESTIONS.
[ APPLAUSE ]
NI THINK WE HAVE TIME FOR 1
QUESTION.
YNEZ?
>> I JUST HAD 1 QUESTION.
THANK YOU FOR A MICE
PRESENTATION AND GREAT WORK.
I HAD A QUESTION, IS THERE
PARENT-CHILD TRANSMISSION WITH
THE MOSAIC VARIANT?
>> GREAT QUESTION.
THE ANSWER IS NO.
IF IT WASN'T INHERITED FROM THE
PARENT, EVERY SINGLE CELL WOULD
HAVE THAT IN THE BODY, CALLED
GERM LINE, AND MOSAIC MEANS IT
HAPPENED AFTER CONCEPTION, YOU
DIDN'T INHERIT IT FROM YOUR MOM
OR DAD, IT HAPPENED AS THE CELLS
WERE DIVIDING IN THE MOM'S WOMB,
WHICH IS WHY THEY WILL NOT HAVE
OVER GROWTH, SO MOAF OF IT WILL
BE ACTUALLY BE NORMAL AND AIR
SELECT GROUP THAT WILL HAVE THE
GENETIC CHANGE.
>> I UNDERSTAND THAT IS THE
QUESTION WHO HAVE THE MOSAIC
CHANGE, THEY BECOME ADULTS SO
THEY DON'T SHARE THE GERM LINE
FOR FERTILITY.
>> OH, THAT'S A GRAY QUESTION
BECAUSE YOU COULD HAVE ARGUE
THAT THE SAME GENETIC CHANGE
COULD BE PRESENT IN THE EGG
CELLS OR IN THE SPERM TELES AND
CESTEES, YOU COULD TRANSMIT IT
TO YOUR PROGENY TO THE CHILDREN,
WE HAVEN'T REALLY STUDIED THAT,
THERE ARE GROUPS BY THE WAY THAT
ARE NOT FOR TREVOR DEC BUT FOR
MA SWRAIIC DISORDERS IN GENERAL,
THE CLASSIC 1 IS CALLED THE
[INDISCERNIBLE] STUDY THIS YEAR,
THEY'RE SEQUENCING CASHES,
THEY'RE GETTING EMBRYOS FROM
PERM AND THE DAD, TO SEE IF IT
CAN TRANSMIT, BUT THERE ARE
STILL TESTS FOR THAT.
WE HAVEN'T DONE IT IF TREVOR DEC
BUT IT'S A GREAT QUESTION.
THE GENETIC CHAIRVELG IS NOT
ONLY PRESENT IN SKELETAL STEM
CELLS BUT ALSO IN OTHER CELLS
THROUGHOUT THE BODY.
YEAH.
NTHIS IS A QUESTION COMING FROM
SOMEONE WHO DOESN'T DO GENETICS.
AND SO IT MAY BE A STUPID
QUESTION, SO FORGIVE ME.
I WAS TRYING TO UNDERSTAND WHAT
IS THE DIFFERENCE BETWEEN
CHIMERISM AND WHAT YOU'RE
DESCRIBING?
>> CHIMERISM?
>> CHIMERISM.
>> YEAH, IT'S HARD TO SPREAN,
BUT THE DIFFERENCES IS THAT IN
THE CASE OF MOSAICISM, IT'S
REALLY THE CELLS KERIEF FRIDAY
OUR CELLS, MEANING LIKE LET'S
SAY CARLOS BUT SOME CELLS WOULD
HAVE A GENETIC SEQUENCE AND
OTHERS CELLS HAVE A DIFFERENT
GENETIC SEQUENCE, IN THIS CASE
OF CHIMERISM, THEY MIGHT DERIVE
FROM A MOM OR SIBLING IN UTERO
THAT DIE INDEED MY MOM'S WEEM,
ET CETERA SO HAVE YOU 2
DIFFERENT GROUPINGS OF THOSE
TOGETHER, IF I GET EXAMPLES OF
CHIMERISM, WHERE 1 GROUP OF
CELLS ARE XY, AND ANOTHER GROUP
OF CELLS AND XX, SO IT'S
DIFFERENT, NOT JUST OF A GENETIC
SEQUENCE, BUT OF THE GENETIC
ORIGIN OF THOSE CELLS IS
ACTUALLY DIFFERENT IN THE CASE
OF CHIMERISM.
IT'S A GREAT QUESTION.
IT'S NOT A DUMB QUESTION.
>> OKAY, THANK YOU SO MUCH
CARLOS.
AND NOW WE'RE READY FOR BIG
HIGHLIGHT OF THE ADRISERY
COUNCIL MEETING.
IF YOU ARE FAMILIAR WITH OUR
SCHEDULE, WE KNOW WE REGULARLY
FEATURE A SEGMENT CALLED THE
VOICE OF THE PARTICIPANT.
THIS GIVES US A CHANCE IT HEAR
FROM THOSE WHO HAVE HAD PERSONAL
EXPERIENCES RELATED TO THE
RESEARCH THAT NICHD FUNDS.
TODAY WE'RE DELIGHTED TO WELCOME
NATALIE AN 11 YEAR-OLD GIRL WITH
EMPP1 DEFICIENCY AND HER PARENTS
ANN AND JERRY.
NATALIE HAS BEEN ENROLL INDEED
MULTIPLE NIH RESEARCH STUDIES
SINCE HER INITIAL VISIT TO THE
NIH AT THE AGE OF 4 MONTHS.
AND JERRY AND NATALIE WILL SPEAK
WITH US ABOUT LIVING WITH A
GENETIC DISORDER AND THE
EXPERIENCE OF BEING A
PARTICIPANT IN A RESEARCH STUDY.
SO AGAIN, WELCOME AND NOW I'M
GOING TO INVITE DR. PERREIRA,
NATALIE AND HER PARENTS TO JOIN
US AND THANK YOU SO MUCH FOR
BEING WITH US TODAY.
[ APPLAUSE ]
>> PLEASE TURN ON YOUR
MICROPHONES.
THERE'S A LITTLE PROFILE OF A
PERSON, LOOKING LIKE SOMETHING
COME OUT OF THE MOUTH, IT'S
SUPPOSED TO BE YOUR VOICE.
>> APPRECIATE IT.
SO THANKS FOR COMING AND YOU
KNOW NATALIE, SORRY I AM PUTTING
YOU ON THE SPOT HERE BUT I
PRIESHT YOU BEING WILLING TO
SHARE YOUR STORY WITH US.
SO, WE'RE GOING TO ASK QUESTIONS
LATER BUT DO YOU MIND STARTING
BY TELLING US HOW YOU GOT HERE
AND I KNOW YOUR STORY QUITE WELL
BUT IF YOU COULD SHARE IT WITH
THE AUDIENCE.
>> SURE.
SO IT'S GOOD TO BE HERE WITH YOU
TODAY.
MY NAME IS ANNE, MY HUSBAND
JERRY AND OF COURSE NATALIE, WE
LIVE IN NORTH TEXAS.
WE HAVE 6 CHILDREN.
THREE CHILDREN WHO ARE NOT
AFFECTED BY GACI, OUR SON IS 20,
YULIAN 14 AND 3 CHILDREN THAT
ARE AFFECTED WITH GACI.
OUR STORY BEGINNING 23 YEARS
-ING WHEN WE WERE EXPECTING OUR
FIRST SON REED CHRISTOPHER.
I HAD A WONDERFUL PREGNANCY, I
LOVE BEING PREGNANT WITH HIM AND
EXCEPT THE MORNING SICKNESS OF
COURSE, THE PREGNANCY WENT
REALLY WELL, HE CAME A BIT
EARLY, ABOUT 4 WEEKS EARLY AND
WE BROUGHT HIM HOME, JUST LOVED
BEING NEW PARENTS AND 1 DAY I
HAD LAID HIM DOWN TO TAKE A NAP
AND I JUST PEEKED IN ON HIM JUST
TO SEE HOW HE WAS AND I COULD
JUST SEE THAT HIS BREATHING WAS
JUST A LITTLE BIT OFF, JUST A
TAD BIT.
AND SO IT WAS JUST SURPRISING TO
ME BECAUSE IT WAS JUST A LITTLE
BIT AND I SHOWED HIM TO JERRY SO
WE CALLED THE CLINIC AND THEY
SAID WHY DON'T YOU COME IN, AND
WE CAME IN AND BEFORE WE KNEW IT
WE WERE IN THE EMERGENCY ROOM
AND REED WAS BEING TRANSFERRED
BY A HELICOPTER TO A CHILDREN'S
HOSPITAL IN MINNEAPOLIS.
THEY WERE VERY PUZZLE EXCLUDE
DID NOT KNOW WHAT WAS GOING ON
WITH HIM.
THERE WAS A LOT OF CONFUSION ALL
THROUGHOUT HIS BODY.
THEY HAD NOT SEEN ANYTHING LIKE
THAT BEFORE.
THEY DIDN'T KNOW WHAT IT WAS,
THEY DIDN'T KNOW FOR SURE AND
THEY GAVE US THE NEWS THAT HE
WAS IAAC, AND THAT WAS GACI BUT
AT THAT TIME IT WAS IIAC, WHICH
STANDS FOR IDIO PATHIN INFANTILE
ARE--ADMINISTRATIVE TORIOLE
SUFFOCATION, AT THAT TOO MANY I
DEPARTMENT KNOW WHAT WAS CAUSING
IT.
THERE WAS NO GOOGLE TO SEARCH
ONLINE, NO PARENT SUPPORT,
NOTHING, AND WE WENT HOME THAT
FIRST TIME WITH REED FEELING
VERY HOPELESS, HIS CHANCE OF
SURVIVAL WAS VERY MINIMAL.
SO WE WENT HOME AND 5 WEEKS
LATER WE RETURNED WHEN HIS
BREATHING GOT OFF AGAIN.
AND IT WAS ABOUT A WEEK LATER HE
PASSED AWAY AT 7 WEEKS IN OUR
ARMS BUT HE HAD SEVERAL MULTIPLE
HEART ATTACKS RIGHT BEFORE HE
PASSED AWAY.
WE DID DO AN AUTOPSIES WHICH DID
SHOW INDEED IT WAS IIAC, AND
THEN WE WERE ABLE TO SEBD
TISSUES BECAUSE AT THAT TIME,
THERE WERE NO RESEARCHERS, THERE
WASN'T A LOT OF RESEARCH BEING
DONE BUT WE KNEW THERE WAS 1 IN
GERMANY SOPHISTICATEDY WE SENT
SOME OF THESE TISSUES TO THEM,
BECAUSE WE WANT TO TO HELP IN
ANY WAY WE COULD TO LEARN MORE
ABOUT THIS HORRIBLE DISEASE.
SO AS YOU CAN IMAGINE, WE LEFT
HEART BROKEN, EMPTY NURSERY,
QUIET HOUSE AND DURING THE NEXT
FEW YEARS I HAD A COUPLE
MISCARRIAGES AND THEN WE WERE
EXPECTING AGAIN IN 2004, OUR SON
DREW.
WHEN WE WERE PREGNANT WITH THEM,
WE RECEIVED THIS LETTER IN THE
MAIL FROM RESEARCHERS LETTING US
KNOW THAT THEY BELIEVE THAT THEY
FOUND THE MUTATION OF IIAC,ING
PREGNANT I WAS LITTLE
OVERWHELMED TO.
BECAUSE I WAS TO HAVE A BABY IN
A FEW WEEKS BUT WE FOUND OUT
THAT AND WE FOUND WE WERE
CARRIERS, OF THE ENPP1 MUTATION
EMPLOY AFTER DREW WAS BORN, WE
HAD HIS CORD BLOOD TESTED AND
SHOWED HE WAS NONAPOPTOTIC
AFFECTED OF GACI BUT WAS A
CARRIER LIKE JERRY AND I.
AFTER DREW, WE OF COURSE WANTED
HIM TO HAVE A SIBLING AND SO WE
UNFORTUNATELY HAD MORE
MISCARRIAGES AND THEN, IN 2010
WE HAD TWINS THAT WERE BORN
GRAHAM AND JULIA AND THEY AS
WELL ARE CARRIERS ONLY AND NOT
AFFECTED WITH ENPP1 MUTATION
EMPLOY NHEY, EVERYBODY, MY TURN.
I'M JERRY, THANK YOU FOR THE
GREAT PRIVILEGE TO BE HERE, OUR
STORY CONTINUED WHEN OUR TWINS
WERE 5 AND HALF MONTHS OLD,
RATHER THAN EXPECTEDLY AND ANNE
BECAME PREGNANT AGAIN AND AT 20
WEEKS THE ULTRASOUND LOOKED GOOD
HOWEVER AT 32 WEEKS THE
ULTRASOUND NOTED A SMALL AMOUNT
OF FLUID AROUND THE BABY'S
HEART.
FURTHER ULTRASOUNDS CONFIRMED
THE FINDINGS THAT THERE WERE
SIGNIFICANT CALCIFICATIONS IN
THE ARTERIES OF THE BABY, AT
THAT POINT IN TIME, WE REACHED
OUT TO DR. FRANK RUCHE FROM
GERMANY AND WE ASKED IF THERE
WAS ANY NEW DEVELOPMENTS AND ANY
KIND OF A TREATMENT.
OUR MEDICAL TEAM AT THE TIME HAD
DETERMINED TO DELIVER THE BABY
AT 36 WEEKS WITH THE POTENTIAL
TREATMENT OF BUSINESS PROGRAMS
FOSTER NURSED FONNATESSATE.
SO WE DID THAT AND OUR SON IAN
JAMES WAS BORN JANUARY 20th IN
2011.
AND IAN WAS TREATED WITH THE
BUSINESS PROGRAMS FOSTER NURSED
FONNATESSATE AND IT APPEARED AT
5 WEEKS OF AGE THAT THE BUSINESS
PROGRAMS FOSTER NURSED
FONNATESSATE WAS HAVING SOME
EFFECT.
THERE WAS A CHUCK UP THAT WAS
DONE AND HE SEEMED TO BE DOING
WELL.
THE 1 THING THE DOCTORS
CAUTIONED US ABOUT WAS THAT WITH
THE IMAGING THEY COULD NOT GET A
YOU GO VIEW OF THE CORONARY
ARTERIES, UNFORTUNATELY 2 DAYS
LATER HE HAD TO BE RUSHED TO THE
EMERGENCY ROOM AND AFTER HOURS
OF WORKING ON HIM, HE PASSED
AWAY FROM CARDIAC ARREST ON
MARCH 40 OF 2012.
THAT WAS INCREDIBLY DIFFICULT
FOR US AND QUITE FRANKLY
DEVASTATING FOR A WHILE.
WE DID NOT KNOW WHAT TO DO BUT
AFTER MONTHS OF PONDERING AND
CONSIDERING ACTUALLY, IT WAS A
DIFFICULT CONVERSATION BUT I
FELT LIKE OUR FAMILY WAS NOT
COMPLETE AND TRY GOING TO YOUR
WIFE AFTER HAVING 2 CHILDREN
PASS AWAY AND SEVERAL
MISCARRIAGES AND ASKING HER TO
GET PREGNANT AGAIN, IT WAS A
DIFFICULT CONVERSATION FOR BOTH
OF US BUT WE FELT THE SAME AND
WE DECIDED WE DIDN'T WANT OUR
FAMILY TO THINK WE WERE CRAZY
BUT WE TOOK THE STEP OF FAITH
AND WE BEGAN TO TRY TO GET
PREGNANT AND SO OF COURSE WE DID
ASK WE WERE GRATEFUL FOR THAT
AND AT THAT POINT IN TIME, AT 20
WEEKS, THE ULTRASOUND SHOWED
CALCIFICATIONS ALREADY IN THIS
CHILD SO WE DECIDED TO DO AN
AMNIO SEN ILLEGALSEN TISIS
RESULTS 1 FIRMED WHAT WE WERE
CONCERNED ABOUT WHICH IS THIS
CHILD ALSO HAD GACI AS WELL.
AT THAT TIME WE WERE DEVASTATED
AND THE ULTRA SOWBD INDICATE
THAD THE CALCIFICATION WERE
PROGRESSING RAPIDLY SO WE DIDN'T
KNOW IF THE BABY WOULD BE ABLE
TO SURVIVE THE PREGNANCY.
AND AT THAT TIME AGAIN, WE
REACHED OUT TO DR. FRANK RUSH
ASKING IF THERE WAS ANY MORE NEW
DEVELOP AMS.
HE DID SEND ME AN ARTICLE THAT
HAD BEEN WRITTEN, I BELIEVE IN
193 OR 4, SOMEWHERE IN THERE,
ANYWAY ISSUE THE ARTICLE
REFERENCES AUTHOR LOCATED AT THE
CHILDREN'S HOSPITAL OF
PHILADELPHIA AND THAT KIND OF
BEGAN A NEW JOURNEY FOR US.
WE HOPPED TO THE GOOGLE MACHINE
AND FOUND OUT THAT THE
CHILDREN'S HOSPITAL IN
PHILADELPHIA DID TREAT CHILDREN
WITH RARE GENETIC DISORDERS AND
SO WE REACHED OUT TO THEM AND
WITHIN DAYS OF REACHING OUT WE
HAD A CONSULTATION APPOINTMENT
WITH THEM AND THAT KIND OF BEGAN
OUR WHOLE NEW YOWRNY FOR US.
>> THAT AT TIME WE MET DR. LE
VINE, AN EBD O CRINOLOGY THAT
TALKED AND WE WERE THRILLED TO
MEET A DOCTOR THAT KNEW MUCH
MORE ABOUT GACI THAN WE DID, HE
HAD SEEN OTHER KIDDOS AND BABIES
AND SO WE STARTED CHATTING WITH
HIM ANDEE SAID WELL IS THERE
ANYTHING THAT CAN BE DONE BEFORE
WE--WHILE I WAS PREGNANT AT THE
TIME, IS THERE ANYTHING THAT CAN
BE DONE TO HELP THOSE
CALCIFICATIONS AND HE TURNED
AROUND IN HIS LITTLE CHAIR AND
SAID HEY I'M UP FOR A CHALLENGE.
HE THEN BROUGHT EXPERTS IN
ALONGSIDE HIM AND THEY WANTED TO
DO SOMETHING THAT THEY HAD NOT
DONE BEFORE AND THAT WAS TO GIVE
ME EPIDRNIOTE AS A MOM AND THE
REASON THEY COULD TO THAT IS
BECAUSE THERE HAD BEEN PRIOR
STUDIES NOT FOR GACI BUT OTHER
PREGNANT WOMEN WHO HAD TAKEN
EPINDRINOTE, AND THERE WAS NO
HARMFUL EFFECT TO THE BABY.
I THEN MOVED ON UTR TO
PHILADELPHIA, WHEN I WAS 30
WEEKS PREGNANT.
I STARTEDOT MEDICINE, I HAD
WEEKLY ULTRASOUNDS AND
DR. APPOINTMENTS AND JERRY WAS
AT HOME WITH THE 3 YOUNGER
CHILDREN AND AMAZINGLY EVERY
WEEK I WOULD GO AND THE
CALCIFICATIONS DID NOT CONTINUE
SPREADING AND GETTING WORSE.
SO NATALIE GRACE WAS BORN AT 39
WEEKS OLD AND SHE IS OF COURSE
RIGHT HERE, SHE WAS WHISKED AWAY
TO THE NICU AFTER SHE WAS BORN,
STARTED ON ANOTHER NEW DIFFERENT
MEDICATION AND IT WAS SODIUM
SULS 8, SHE HAD THAT THROUGH A
CENTRALALIZE, INFUSIONS 5 DAYS A
WEEK AND THAT 1 YEAR MARK AS
DR. CARLOS FERREIRA MENTIONED IS
REALLY IMPORTANT AND WE WERE
HOLDING OUR BREATH THROUGHOUT IT
ALL, BUT THAT BETWEEN PRAYER AND
MEDICINE WE REALLY BELIEVE THAD
THAT KEPT THE CALCIFICATIONS
AWAY.
SO WE CELEBRATED BIG FOR
NATALIE'S FIRST BIRTHDAY AND
CONTINUED THE SODIUM TREATMENTS
UNTIL SHE WAS 13 MONTHS OLD, AT
3 YEARS OLD SHE WAS STARTED ON
THE PHOSPHOR OWS AND CALCTROL TO
HELP PREVENT RICKYS, THERE'S A
BIT OF CHANGE NOTHING HER BONES
AND KNEES AND THEN SHE DID START
WEARING HEARING AIDS AT 3 YEARS
OLD AS WELL.
>> WELL, THANK YOU FOR SHARING
THATORY AGAIN AND I'VE HEARD IT
MULTIPLE TIMES IN THE LAST 11
YEARS BUT IT'S JUST AS MOVING AS
THE FIRST TIME I HEARD IT.
SO YOU'VE OBVIOUSLY BEEN
ENROLLED IN A FAW DIFFERENT
STUDIES HERE IN THE MIH, AND SO
CAN YOU TELL US A BIT MORE HOW
IT'S BEEN LIKE TO BE A PARTIC
PAPT IN RESEARCH IN.
>> ABSOLUTELY.
ACTUALLY TODAY I LEARNED THIS IS
OUR 11th TRIP TO THE NIH.
SO WE FEEL LIKE OFFICIAL
RESIDENTS OF THE NIH.
BUT YOU KNOW IT'S CRAZY.
WE NEVER IMAGINED--I DIDN'T--I
HAVE TO BE TRANSPARENT, I HAD NO
IDEA WHAT THE NATIONAL
INSTITUTES OF HEALTH WAS.
AND I HAD NO IDEA WHAT AN
AMAZINGLY RICH RESOURCE THE
NATIONAL INSTITUTE OF HEALTH IS,
FOR A FAMILY LIKE OURS.
AMAZING.
SO OUR JOURNEY HERE REALLY BEGAN
WITH DR. LE VINE AT CHOP WHO LET
US KNOW THE LAST APPOINTMENT WE
HAD WITH THEM AT THE HOSPITAL IN
2014, 2013, PARDON ME, THAT WE
MIGHT BE GETTING A CALL FROM
SOMEONE AT THE NATIONAL
INNSITUTE OF HEALTH, AND WITH
ALL DUE RESPECT, I JUST KIND OF
LISTENED AND THOUGHT WELL IF
THAT HAPPENS GREAT, IF IT
DOESN'T THAT'S FINE BUT LATER IN
2013 IT WAS IN AUGUST,ILE NEVER
FORGET THE DAY I GET A CALL AND
A GENTLEMEN BY THE NAME OF
DR. WILLIAM GALL IS ON THE OTHER
LINE AND HE INTRODUCES HIMSELF
AND HE HAS A GREAT SENSE OF
HUMOR BY THE WAY IF YOU HAPPEN
TO KNOW DR. GALL, SO YOU SAYS
YOU MAY WANT TO CHECK OUT A 60
MEMBERUTE SPOT ON ME.
I SAID THAT'S FINE, I CAN GOOGLE
THAT UP.
ANYWAY WE HAD A GREAT PHONE
CONVERSATION AND IT'S REALLY
HARD FOR ME TO QUANTIFY THE
WORDS HOW I FELT AS A DAD, AS A
PARENT HAVING LOST 2 CHILDREN
AND NOW A CHILD GACI, HONESTLY
IN OUR JOWRN TOW HAVE OUR
FAMILY, FOR 12 YEARS WE FELT
LIKE WE WERE NOT ONLY CLIMBING
UPHILL WE FELT LIKE IT WAS AN
INSURMOUNTABLE CLIMB AND EVERY
MEDICAL PROFESSIONAL WE TALKED
TO UNTIL WE GOT TO DR. LE VINE
NO 1 HAD HEARD OF THIS GENETIC
DISORDER AND IN FACT WHEN IT WAS
DIAGNOSED WITH OUR FIRST CHILD
IN 2001, WE WERE TOLD AT THAT
TIME IF ALL MEDICAL HISTORY
AROUND THE WORLD THERE HAD EVER
BEEN 100 RECORDED CASES AND I
CAN'T PUT INTO WORDS HOW YOU
FEEL AS A PARENT WHEN YOU HEAR
THAT.
IT'S LIKE, THAT IS THAT EVEN
POSSIBLE?
SO FOR US TO RECEIVE A CALL FROM
DR. GALL, TO BE INVITED TO COME
TO THE NATIONAL INSTITUTE OF
HEALTH TO PARTICIPATE IN ANY
RESEARCH THE ANSWER WASN'T LET
ME THINK ABOUT IT, THE ANSWER
WAS ABSOLUTELY IMMEDIATELY WHAT
CAN WE DO?
AND LITTLE DID WE KNOW AT THAT
TIME, HOW AMAZING EVERYONE THAT
WE ENCOUNTER THE AT THE NATIONAL
INSTITUTE OF HEALTH WHAZ BEEN.
THEIR HEART, THEIR INTEREST,
THEIR EXPERTISE AND I THINK THE
BIGGEST THING THAT FELT
SIGNIFICANT TO US WAS, WE FELT
ALONE.
AND IN ALL OF THE MEDICAL
COMMUNITIES SO FEW DOCTORS AND
EVEN EXPERTS KNEW ABOUT THIS
PARTICULAR DISORDER, AND TO COME
TO A PLACE LIKE THE NATIONAL
INSTITUTE OF HEALTH THAT WAS
EVEN INTERESTED THIS IS SUCH AN
ULTRA RARE DISORDER TO HAVE
ANYONE INTERESTED WAS MIND
BLOWING TO ME.
SO I JUST WANT TO SAY THAT US
PARTICIPATING AT THE NIH HAS
BEEN AN ABSOLUTE PRIVILEGE FOR
US AND HAVING THE NIH SORT OF IF
YOU WILL, BE ON OUR SIDE AND
COMBATING AND FIGHTING AND
LEARNING ABOUT THIS GENETIC
DISORDER, FOR US IT WAS LIKE
WIND IN OUR SAILS FOR THE FIRST
TIME IN OUR LIVES IN 12 YEARS.
SO IT'S HARD FOR ME TO PUT THAT
ALL IN WORDS BECAUSE I HAVE SUCH
ADMIRATION, RESPECT AND
APPRECIATION AND THEN I LEARNED
OF COURSE THAT THE NATIONAL
INSTITUTE OF HEALTH IS FEDERALLY
FUNDED AND I JUST REALLY, REALLY
APPRECIATE ALL OF THE RESEARCH,
ALL OF THE HELP YOU'RE DOING.
MAYBE I CAN SUMMARIZE IT WITH
THIS, I HAD A BRIEF CONVERSATION
WITH DR. GALL AFTER WE ARRIVED
FOR THE VERY FIRST TIME AND I
WAS REALLY PERPLEXED WHY A
RESEARCH ORGANIZATION WOULD BE
INTERESTED IN STUDYING SUCH AN
ULTRA RARE DISORDER BECAUSE IT'S
NOT SOMETHING THAT'S PROBABLY
GOING TO BE SOMETHING THAT CAN
BE PROFITED FROM SO TO SPEAK AND
DR. GALL HELPED ME UNDERSTAND.
HE SAID WHEN WE STUDY THE ULTRA
RARE DISORDERS, AND I WILL NEVER
FORGET THIS CONVERSATION, WE GET
CLUES ON MORE COMMON DISORDER
ANDS THAT SETTLE ED IT FOR ME.
SO THE DECISION TO PARTICIPATE
IN RESEARCH WAS IMMEDIATELY YES
AND WE'RE SO GRATEFUL THAT WE
HAVE DONE THAT AND WE ARE
SOCIETY VERY GRATEFUL TO THE
NIH.
>> SO NATALIE WAS 4 MONTHS OLD
WHEN WE FIRST CAME, HER STROLLER
AND ALL THE GEAR THAT BABIES
NEED, HAULING IT THROUGH, GOING
UP TO THE HILL TO AT A AT THE
CHILDREN'S INTERNAL AUDIT AND WE
GO UP THE HILL AND WE REMEMBER
GETTING UP EARLY DOING
INFUSIONS, GETTING UP A COUPLE
HOURS EARLY BEFORE WE LEAVE, WE
WERE THERE TO DO WHAT WE COULD
AND WE WERE JUST SO GRATEFUL TO
BE JUST THRILLED BIKE JERRY SAID
THAT THEY WERE INTERESTED IN
LEARNING ABOUT GACI.
WE WERE GRACIOUSLY WELCOMED,
GRACIOUSLY WELCOMED BY THE TEAM
OF DOCTORS HERE ALONG WITH
DR. CARLOS FERREIRA, AND WE GAVE
SKIN BIOPSIES, NATALIE WAS JUST
A TINY BABY AND LITTLE SKIN
BIOPSY, WE WERE ALL IN AND
CONTINUED TO BE AND WE REALLY
APPRECIATE AS WELL THEM
COLLABORATING WITH DR. LE VINE
AND ALSO OUR DOCTORS AT MIN MEN
AND THEY CAME ALONGSIDE ALL OF
US.
SO NATALIE HAD SOMETHING SHE
JUST WANTED TO SHARE IF YOU
DON'T MIND.
>> HI, NIEM NATALIE AND I'M JUST
STARTED FIFTH GRADE HAVING FGACI
IS HARD BECAUSE I HAVE TO TAKE
CARE OF A LOT OF THINGS, MY
HEARING AIDS AND TAKING MY
MEDICINE AND GOING TO
DRS. APPOINTMENTS.
THANK YOU FOR HELPING ME WITH
THAT AND HAVING GACI.
[ APPLAUSE ]
NTHANKS FOR SAYING THAT NATALIE.
ONE LAST QUESTION BECAUSE I KNOW
WE'RE SHORT ON TIME BUT
OBVIOUSLY YOUR JOURNEY WITH GACI
HAS BEEN QUITE LONG, CAN YOU
TELL US WHAT HAS CHANGED OVER
THE COURSE OF THIS TIME FOR YOU.
>> YEAH, 11 YEARS AND 11 VISITS,
AND 2018, JERRY AND I ALONG WITH
3 OTHER FAMILIES, A FAMILY FROM
BOSTON, IRELAND AND AUSTRALIA
AND WE CONNECTED AND STARTED A
NONPROFIT ORGANIZATION CALLED
GACI GLOBAL SO WE ARE COMING
TOGETHER TO HELP PROVIDE
RESEARCH AND SUPPORT FOR
FAMILIES, WE PUT A WEBSITE IN
PLACE BECAUSE THERE WAS NOTHING
OUT THERE EXCEPT HORRIFIC
STORIES ABOUT BABIES PASSING
AWAY.
WE DESIGNED A 1 STOP GACI
WEBSITE AND WE ALSO HAVE A VERY
ACTIVE FACEBOOK GROUP WHERE
PATIENTS CAN GET ON, FAMILIES,
MOMS, DADS, WHATEVER IT IS
ASKING QUESTIONS AND WE'RE THERE
TO HELP THEM ALONG THEIR
JOURNEY.
AND LAST YEAR WAS PRETTY
INCREDIBLE WE HAD 2 GACI GLOBAL
CONFERENCES, 1 WAS IN MAN
CHESTIER ENGLAND JOURNAL LABD
AND THE OTHER WAS DOWN THE ROAD
IN BALTIMORE.
WE LOVE MEETING OTHER GACI
FAMILIES, FOR MANY IT'S THE
FIRST TIME THEY EVER MET ANOTHER
GACI FAMILY AND HEARING THEIR
STORIES FIRST HAND IS JUST--IS
AMAZING TO SEE HOW EACH OF THEM
HAVE COUPLE DIFFERENT SITUATIONS
AND AS A COMMUNITY AS WELL TO
GET TOGETHER AND TO LEARN FROM
THE MEDICAL FIELD IS ALL VERY
HELPFUL.
AND I THINK 1 LAST THING WITH
THAT IS ALSO JUST REALLY GOOD
FOR THE KIDS TO GET TOGETHER AND
THEY CAN SEE AND PLAY.
THEY HAVE FUN TIME FOR THEM AND
FOR THAT JUST HEART WARMING TO
SEE THEM CONNECT IN WAY A.
NATALIE CONNECTED WITH FRIENDS,
WITH DIFFERENT PATIENTS IN
IRELAND AND THE U.S. AS WELL, SO
IT'S BEEN REALLY AMAZING IN THAT
WAY.
>> ABSOLUTELY I WILL ADD THAT
THE NIH HAS BEEN AMAZING.
LITTLE DID WE KNOW THAT BY
COMING HERE, IT BEGAN THIS
EXPANSION OF THE GACI COMMUNITY.
NIH COMMUNICATE WIDE SO MANY
GACI FAMILIES, THAT HAVE COME
HERE FROM AROUND THE WORLD, THEY
CAN COME HERE AND THAT
CONNECTION OF BEING ABLE TO COME
HERE, HAS ALSO BEEN DRIVEN BY
DR. FERREIRA, AND I WOULD LIKE
TO TAKE A MEMORY CLONE TONIGHT
GIVE HIM AMAZING
CONGRATULATIONS.
I DON'T THINK I HAVE MET A
MEDICAL PROFESSIONAL WHO HAS A
HEART FOR HIS PATIENTS LIKE
DR. FERREIRA DOES, NOT ONLY IS
HE AMAZING WITH US, BUT HE'S SO
CRITICAL TO CONNECTING WERERS,
DOCTORS AND GACI PATIENTS AND IT
IS LITERALLY SAVING LIVES ALL
OVER THE WORLD AND IT HAS BEEN
AN ABSOLUTE LOAMACY PLEASURE TO
WORK WITH YOU DOCTOR AND THANK
YOU FOR YOUR HEART AND REEBTLY,
OUR GLOBAL IMRKS ACI COMMUNITY
AWARDED DR. FERREIRA, WHICH IS
THE HOPE AWARD WE JUST IDENTIFY
SOMEONE WHO IS CONTINUOUSLY
GIVING HOPE INTO OUR GACI
COMMUNITY AND THAT IS MOST
CERTAINLY DR. FERREIRA.
SO THANK YOU.
[ APPLAUSE ]
>> THANK YOU FOR SAYING THAT.
YOU MADE ME CRY ONCE BEFORE AND
I HOPE THIS WILL NOT BE THE
SECOND TIME.
SO THANKS SO MUCH.
AND THANK YOU FOR THE ALTRUISM
AND LETTING US LEARN MORE AND
HELPING FAMILIES FIND ANSWERS
FOR THE QUESTIONS.
SO VERY MUCH APPRECIATE IT.
>> WELL I DIDN'T GET A CHANCE TO
INTRODUCE MYSELF, I'M
DR. DIANA BIANCHI,IME THE
DIRECTOR OF THE NACHHD, AND I
HAVE A QUESTION FOR YOU NATALIE
ARE THERE ANY RESTRICTIONS ON
YOUR ACTIVITY, CAN YOU DO
EVERYTHING AT COOL THAT
EVERYBODY ELSE CAN DO?
THAT'S TERRIFIC.
AND ALSO CAN YOU JUST TELL US A
LITTLE BIT ABOUT YOUR
EXPERIENCES AT THE CHILDREN'S I
NN?
>> CAN YOU TURN ON YOUR
MICROPHONE?
PEOPLE ARE WATCHING YOU ONLINE
JUST SO YOU KNOW.
THERE YOU GO.
IT'S ON.
>> I LIKE PLAYING WITH THE
CHILDREN AND JUST SEEING OTHER
PEOPLE, LITTLE KIDS, PLAYING
OUTSIDE, BUT IT'S TOUGH.
>> AND YOUR PARENTS CAN STAY
HERE TOO, SO IT'S PART OF THE
WHOLE EXPERIENCE.
>> YEAH.
SO FOR NATALIE, SHE WAS SO YOUNG
AND DOESN'T REMEMBER A LOT BUT
PROBABLY IN THE LAST YEAR SHE
GOES, MOM WHERE IT WAS WE STAYED
WHEN WE WENT TO WASHINGTON AND
SHE'S LIKE I REMEMBER THAT
PLACE.
AND SO, EVEN YEARS LATER, THEY
REMEMBER THOSE THINGS THEN.
SHE DIDN'T MEMBER THE LAB, AND
THE POKES AND THINGS LIKE THAT
BUT SHE REMEMBERED THE
CHILDREN'S IN WHICH IS REALLY
SAYING, SHE STAYED 1 NIGHT THIS
NIGHT ON ALL IN ON WANTING TO
STAY THERE AS WELL.
NTHAT'S TERRIFIC.
SO WE HAVE A QUESTION FROM 1 OF
OUR ADVISORY COUNCIL MEMBERS
DR. VARKIN WHO COULDN'T BE WITH
US TODAY.
SHE HAS A QUESTION.
>> CAN EVERYBODY HEAR ME?
THANK YOU SO MUCH, I'M SORRY I'M
NOT WITH YOU IN PERSON.
NATALIE YOU AND YOUR PARENT AARE
AMAZING.
I WAS CURIOUS A COUPLE THINGS,
WHAT IS RESEARCH MEAN TO YOU?
THAT DOES THAT WORD MINE
ANYTHING TO YOU NATALIE IN AND
THEN I WOULD LOVE TO HEAR HOW
YOUR PARENTS DEFINE WHAT WERE IS
NOW THAT THEY'VE GONE THROUGH
THIS PROCESS AND WHAT AN
MAIRKSZING PROCESS YOU HAVE.
>> I THINK RESEARCH IS FINDING
MORE WHAT OTHER KIDS HAVE AND
SEE WHAT DOCTORS CAN SEE ABOUT
YOU AND WHAT GACI DID TO YOU AND
YOURSELF.
NTHANK YOU.
[ APPLAUSE ]
>> SO IMPORTANT.
>> AND THEN JUST FOR YOUR
PARENTS I WANTED TO HEAR NOW
THAT YOU'VE BEEN THROUGH THIS
BECAUSE YOU HAVE LAYERS OF YOUR
STORY AND WHAT AN AMAZING FAMILY
YOU ARE AND COMMITTED TO YOUR
CHILDREN TO YOUR COMMUNITY AND
TO THE LARGER SOCIETY AND EVEN
GOING THE EXTRA MILE TO THEN
START THIS NONPROFIT, IT'S
PRETTY AMAZING.
JUST CURIOUS NOW THAT YOU'VE
GONE THROUGH THIS WHAT'S THE
ROLE RESEARCH PLAYING FOR YOU?
>> YEAH, I WOULD JUST SAY FOR ME
AND MY FAMILY AS I WAS GROWING
UP, WE DIDN'T HAVE ANYTHING THAT
HAD ANY MEDICAL CHAL ERVELGS SO
AT THAT PONENT MY UNDERSTANDING
OF RESEARCH WAS SOMETHING THAT
WAS DONE IN A FAR AWAY PLACE
BEHIND CLOSED DOORS WITH REALLY
SMART PEOPLE IN WHITE COATS.
THAT WAS MY UNDERSTANDING BUT AS
I'VE OBVIOUSLY BEEN NOW
PARTICIPATE NOTHING RESEARCH
EVERY TIME WE SET FOOT ON THE
PROPERTY AT THE NIH, LARGELY
BECAUSE OF GACI AND BECAUSE OF
NATALIE, WE JUST FEEL LIKE ROCK
STARS.
WHICH IS GREAT.
AND I FEEL LIKE RESEARCH IS SO
MUCH MORE PERSONAL NOW THAN WHAT
IT WAS BEFORE.
IT'S REAL PEOPLE WORKING VERY
HARD TO UNDERSTAND THE HUMAN
BODY AND UNDERSTAND WHAT CAN BE
OUT OF ALIGNMENT IN THE HUMAN
BODY THAT'S CAUSING A PARTICULAR
DISORDER AND SO, IT'S ALL OF
THOSE THINGS AND IT'S ALSO THE
HUMAN INTERACTION AND THE HUMAN
CONNECTION.
EVERY TIME WE COME TO THE NIH,
WE LOVE VISITING WITH ALL OF THE
STAFF HERE THAT WE CAN AT THE
NIH BECAUSE THEY'VE ALL BEEN
FANTASTIC.
IT'S BEEN GREAT INTERACTIONS, SO
RESEARCH FOR ME IS NOT
NONPERSONAL INTOAR.
IT'S REALLY QUITE PERSONAL.
>> I WOULD JUST ADD TO THAT, TOO
YOU KNOW COMING FROM 23 YEARS
AGO WHEN THERE REALLY WASN'T
ANYTHING TO DOJING CLINICAL
TRIALS.
IT'S A HUGE, HUGE,--IT IS
AMAZING THAT ALL THAT HAS
HAPPENED AND IS HAPPENING BUT
IT'S BECAUSE OF RESEARCH THAT
WE'RE NOW DOING SOME CLINICAL
TRIALS SO IF WE DIDN'T HAVE THAT
WE WOULDN'T HAVE CLINICAL
TRIALS.
SO WE'RE JUST SO APPRECIATIVE OF
THAT.
>> I THINK YOU COULD ALSO VEY
THIS, TOO, IF THE NIH WAS NOT
INVOLVED WE WOULDN'T BE HAVING
CLINICAL TRIALS.
AND WE WOULDN'T BE HAVING THIS
CONNECTIVITY AMONG OTHER GACI
FAMILIES ALL OVER THE WORLD.
NIH HAS BEEN AT THE CENTER OF
ALL OF THAT.
>> THANK YOU SO MUCH FOR SHARING
YOUR STORY.
>> THANK YOU.
SO YOU'RE BEING PROJECTED ONLINE
EVERY WHERE BUT PARTICULARLY FOR
OUR STAFF AND YOUR STORY AND
INCREDIBLY INSPIRING AND
MOTIVATING.
I JUST WANT TO READ TO YOU WHAT
1 OF OUR BRANCH CHIEFS SAID,
SHE'S WATCHING ONLINE, THANK YOU
SO MUCH FOR SHARING, NATALIE AND
PARENTS.
INCREDIBLY MOTIVATING TO ALL OF
US WHO WORK HERE.
SO WE CAN HEAR THE SCIENCE THAT
DR. FERREIRA TOLD US ABOUT BUT
WHEN WE SEE NATALIE, WE HEAR
YOUR STORY, WE FEEL FOR YOUR
LOSSES, IT JUST MAKES AN
INDELIBLE IMPRESSION AND YOU ARE
ROCK STARS AND YOU GIVE US THE
MOTIVATION EVERY DAY TO GET OUT
OF BED AND SOLVE MEDICAL
MYSTERIES AND THAT'S WHY I CALL
NIH, ESPECIALLY THE CLINICAL
CENTER OF THE HOUSE A HOPE
BECAUSE IN OUR LIFETIME, I MEAN,
WE NOW KNOW THE MUTATION OR THE
VARIANT AS WE WOULD SAY, IN THE
YEEN THAT HAS RESULTED IN ALL OF
THE HEART BREAK, BUT ALL OF THAT
WORK THAT WAS DONE TO SEQUENCE
THE HUMAN GENOME WAS LARGELY
DONE AT THE NIH AS WELL.
SO GOING FROM THAT TO
UNDERSTANDING TO HOW THAT
VARIANT AFFECTS THE HUMAN BODY
AND METABOLISM AND CALCIUM AND
THEN GOING FROM THAT TO
TREATMENT IS REALLY AS WE SAID
IT'S SUCH A SHORT TIME.
WE COULDN'T DO IT WITHOUT PEOPLE
LIKE YOU BEING WILLING TO
SACRIFICE YOUR TIME AND EFFORT
AND FOR NATALIE BEING WILLING TO
BE A ROCK STAR, SO FROM THE
BOTTOM OF OUR HEARTS WE THANK
YOU.
[ APPLAUSE ]
WE ARE NOW GOING TO TAKE A SHORT
BREAK.
LET'S TAKE A 10 MINUTE BREAK.
TEN MINUTES SO WE STAY ON
SCHEDULE.
HAS THE UNFORTUNATE TASK OF
FOLLOWING NATALIE AND OUR NEXT
SPEAKER ON THE OTHER HAND IS A
GREAT SPEAKER, DR. NONI BYRNES,
APPOINTED AS THE DIRECTOR FOR
THE CENTER FOR SCIENTIFIC REVIEW
IN 2019 WHERE SHE OVERSEES MORE
THAN 600 THROW A FOOTBALL WHO
CONDUCK THE RECEIPT AND REFERRAL
OF NETWORK IH APPLICATIONS.
AND CARRY OUT THE LARGE MAJORITY
OF NIH PEER REVIEWS.
TODAY DR. BYRNES WILL TELL US
ABOUT THE NEW EFFORTS BY THE
CENTER FOR SCIENTIFIC REVIEW, TO
STRENGTHEN THE NIH'S PEER REVIEW
PROCESS INCLUDING THE NEW
INITIATIVE CALLED SIMPLIFYING
REVIEW OF THE RESEARCH PROJECT
GRANT APPLICATIONS.
THANK YOU DR. BYRNES FOR JOINING
US TODAY.
>> THANK YOU DIANA, THEY'RE JUST
FINISHING GETTING ME SET UP
HERE.
ALL RIGHT.
THANK YOU VERY MUCH.
OKAY, THANK YOU ALL VERY MUCH.
THANKS DIANA AND REBECCA FOR THE
INVITATION TO COME BACK TO
NETWORK ICHD COUNCIL AND TALK TO
YOU ALL IMEAN.
I'VE DONE THIS AT LEAST A COUPLE
TIMES BEFORE.
LET ME START OFF BY REMINDING
PEOPLE, FIRST OF ALL LET ME JUST
SAY, I CAUGHT THE TAIL END OF
THE LAST DISCUSSION AND I WANT
TO SAY IT'S TERRIFIC.
IT'S SUCH A WONDERFUL
INCORPORATION OF PATIENT VOICES
INTO THE SECOND LEVEL OF REVIEW
WHICH IS YOU AS COUNCIL.
WHAT WE DO IS THE FIRST LEVEL OF
REVIEW, AND CSR'S MISSION IS TO
INSURE THAT GRANT APPLICATIONS
RECEIVE FAIR INDEPENDENT EXPERT
AND TIMELY SCIENTIFIC REVIEW,
THAT'S FREE FROM INAPPROPRIATE
INFLUENCES AND TO ALLOW THE NIH
TO IDENTIFY THE STRONGEST MOST
PROMISING RESEARCH FOR SUPPORT.
OVER THIS, THIS IS A SNAPSHOT OF
CSR OVER THE LAST FISCAL YEAR.
CSR REVIEWED MORE THAN 67,000
GRANT APPLICATIONS MRI KAGZS,
THAT'S ABOUT 77% OF NIH
APPLICATIONS, VAST MA WRORRITY
OF RO-1S AND SMALL BUSINESS AND
FELLOWSHIP APPLICATIONS.
AND 164 DIFFERENT SPECIAL
INITTIAIVE ITS, MANY OF THE FUND
NIH INITTIA OF ITS ARE HANDLED
BY CSRs AND OF COURSE WE DO
THIS WITH THE ASSISTANCE OF
AROUND 19,000 EXPERT REVIEWERS
EVERY YEAR, 250 OR SO,
SCIENTIFIC REVIEW OFFICERS WHO
ADMINISTER AROUND 1200 REVIEW
MEETING EVERY YEAR.
SO JUST A QUICK NAP SHOT OF OUR
STRATEGIC FRAMEWORK THAT DRIVES
ALL OF OUR INITIATIVES AND
ACTIONS AND IT'S ALL FOCUSED ON
ENHANCING THE QUALITY OF THE
OUTPUT OF PEER REVIEW AND IT'S
IN 3 DOMAINS, I DON'T KNOW IF
THERA'S--NO, THAT DOESN'T
MATTER, THERE'S STUDY SECTION
PROCESS AND REVIEWERS, AND OF
COURSE, OUR STAFF, OUR CENTRAL
TO DRIVING OUR MISSION.
AND THE STUDY SECTION COMES IN
AT THE SCOPE OF THE STUDY
SECTION VERY MUCH DRIVES THE
OUTPUT, RIGHT IN WHETHER THERE'S
ENOUGH COMPETITION, WHETHER IT
IS INCORPORATING EMERGING AREAS
AND REQUESTS AND EVEN IF YOU
HAVE A PERFECTLY SCOPED STUDY
SECTION, THE QUALITY OF THE
REVIEWERS, WHO YOU RECRUIT,
WHETHER THEY'RE WELL TRAINED,
BROAD ENOUGH WILL ALSO DRIVE THE
OUTPUT AND THEN EVEN IF YOU HAVE
PERFECTLY SCOPED STUDY SECTION
WITH YOU KNOW REALLY WELL
TRAINED STRONG EXPERT REVIEWERS,
THEIR ARE ASPECTS OF THE PROCESS
THAT VERY MUCH INFLUENCE OUTPUT
WHICH IS THE INTEGRITY OF THE
PROCESS, CONFIDENTIALITY, YOU
KNOW THE FUNDING RATES ARE SO
LOW THAT JUST 1 TIPPING THE
BALANCE A LITTLE BIT EVENT FOR 1
OR 2 IMRANTS MAKESSA I BIG
CASCADING DIFFERENCE TO
EVERYTHING ELSE.
MITIGATION AND A NUMBER OF OTHER
PROCESS ISSUES.
AND THEN OF COURSE, OUR
OPERATING PRINCIPLES ARE TO
INSURE WE DO WHATEVER WE DO WITH
TRANSPARAPHERNALIAS.
WE USE DATA TO LOOK AT AND DRIVE
OUR DECISIONS.
WE ENGAGE A LOT WITH OUR OWN
ADVISORY COUNCIL THAT IS
INTEGRAL TO EVERYTHING WE'RE
DOING AND HAVE DONE OVER THE
LAST 4 OR 5 YEARS.
AND THEN INVESTING IN OUR STRAF
WHO ARE THE ENGINEER ENGINE AND
DRIVE OUR MISSION.
AND JUST AN UPDATE ON CAPACITY
BUILDING IN CSR TO INSURE THE
FUTURE OF NIH PEER REVIEW AND
THIS IS INSURING WE HAVE A
STRONG FOUNDATION AND
COMMUNICATIONS AND TRANSPARENCY,
TRAINING AND DATA ANALYTICS.
IN 2020 WE FORMED THE OFFICE OF
COMMUNICATIONS AND OUTREACH.
THIS IS VERY MUCH DOING OUTREACH
TO NEW INSTITUTIONS AND
COMMUNITIES THAT DON'T ENGAGE
WITH THE NIH AS MUCH.
IN 2021 WE FORMED THE DIVISION
OF PLANNING ANALYSIS AND
INFORMATION MANAGEMENT.
THIS IS OUR--THIS IS OUR VERY
STRONG DATA OPERATION THAT
DRIVES ALL OF OUR DECISIONS
EXTERNALLY AND INTERNALLY AND
ALL OF OUR INITIATIVES, AND THEN
MOST RECENTLY IN 2022,
CENTRALIZED OFFICE OF TRAINING
WHICH DEVELOPED RESOURCES FOR
STUDY SECTION CHAIRS, REVIEWERS
AND OUR THROW A FOOTBALL BECAUSE
ALL OF THAT DRIVES THE QUALITY
OF THE OUTPUT OF PEER REVIEW.
AND THIS IS WHAT THIS HAS DONE
IS ALLOWED US TO SUCCESSFULLY
MOVE FORWARD A NUMBER OF
INITIATIVES HAVING THESE
RESOURCES IN PLACE.
SO I'M JUST GOING TO TOUCH ON
SOME OF THE INITIATIVES BEFORE I
GET INTO THE CHANGES OF PEER
REVIEW CRITERIA AND THE REASON I
WANT TO BRING THESE UP IS
BECAUSE MANY OF YOU OR YOUR
COLLEAGUES MAY HAVE SERVED IN
PEER REVIEW 5 YEARS AGO, 10
YEARS AGO, AND IT'S REALLY
IMPORTANT THAT YOU KNOW THAT
THINGS HAVE CHANGED AND THAT,
MAKE SURE THAT YOU'RE
COMMUNITIES KNOW THAT THINGS
HAVE CHANGED.
THE FIRST IS BROADENING THE POOL
OF DIVERSITY RUVEERS, WHEN I SAY
DIVERSITY, I WANT GOOD
SCIENTIFIC DIVERSITY, GEOGRAPHIC
DIVERSITY, ETHNIC, RACIAL,
GENDER, ALL OF THAT.
WE'VE MADE A LOT OF PROGRESS IN
THAT AND I HAVE DATA BUT I DON'T
SHOW IT IN THIS TALK UNLESS YOU
WANT TO SEE IT LATER, I HAVE IT
IN THE,A PEPPED EXCITATORY BUT
WE WANT TO MAKE HUR WE REFRESH
STUDIES SECTIONS AND GET NEW
PERSPECTIVES AND REDUCE UNDUE
INFLUENCE AND ESPECIALLY INDUCE
SCIENTIFIC GATE KEEPING IN ANY
GIVEN SCIENTIFIC AREA AND STUDY
SECTION.
THERE ARE A NUMBER OF TRAININGS
THAT HAVE BEEN LAUNCHED IN THE
LAST COUPLE OF YEARS, 1 IS BIAS
AWARENESS AND MITIGATION AND THE
OTHER IS REVIEWER INTEGRITY.
THAT'S NOW REQUIRED BOTH OF
THESE ARE REQUIRED FOR ALL NIH
REVIEWERS, PRIOR TO
PARTICIPATION.
BIAS AWARENESS AND MITIGATION IS
NOT IMPLICIT BIAS, IT'S ACTUALLY
BIAS THAT AM CANS INTO THE PEER
REVIEW PROCESS, IT'S VERY IRPT
ACTIVE.
IT'S GOTTEN A LOT OF POSITIVE
FEEDBACK FROM REVIEWERS, AND
MOST IMPORTANTLY, IT SHOWS
REVIEWERS, HOW TO INTERCEDE IN
THE MIDDLE OF A STUDY SECTION
MEETING WHEN I THEY SEE
STATEMENTS BEING MADE THAT ARE
NOT THERE OR NOT DIRECTLY
RELATED TO SCIENTIFIC MERIT AND
WE SEE THAT HAPPENING
ANECDOTALLY.
AND IF YOU'VE SERVED RECENTLY,
YOU'VE SEEN THAT HAPPENING.
AND THEN WE KNOW WITH 19,000
REVIEWERS WE'RE NOT GOING TO GET
IT ALL RIGHT ALL THE TIME EVERY
SINGLE STUDY SECTION, EVERY 1 OF
THOSE 1200 MEETINGS, SO WE HAVE
A DIRECT REPORTING AVENUE THAT
WE'VE ESTABLISHED THAT IS READ,
AND PUBLICIZED THAT AND ANYONE
CAN REPORT UNFAIRNESS IN THE
PROCESS, IT COMES CORRECTLY TO
CSR LEADERSHIP, WE INVESTIGATE
EVERYTHING AND ABOUT HALF WILL
TIME WE AGREE WITH THE BIAS
STATEMENT AND REDO THE REVIEW IN
THE SAME CYCLE AND THEY REACH
BACK OUT TO REVIEWERS AS WELL,
SO THIS IS REALLY IMPORTANT FOR
CULTURE CHANGE.
IF YOU CAN PUBLICIZE THAT I
WOULD APPRECIATE IT.
AND THEN FINALLY SIMPLIFIED
FRAMEWORK FOR WHAT I WILL
TAKEN--THEYUC ABOUT TODAY FOR
MOST NIH RPGs AND REVIEW
CRITERIA FOR APPLICATION AND
FELLOWSHIP AWARDS.
BOTH OF THESE CHANGES ARE
EFFECTIVE WITH APPLICATIONS THAT
ARE BEING RECEIVED IN YEN 20
TWIEVER AND SO THESE WOULD BE
SUMMER 2025 STUDY SECTION
MEETINGS.
TALK ABOUT THE SIMPLIFIED REVIEW
FRAMEWORK, SO THERE ARE 2 MAIN
GOALS WE STARTED WITH, 1 WAS
OVER THE COURSE OF THE LAST
DECADE AND A HALF, A LOT OF
ADMINISTRATIVE ITEMS HAVE BEEN
ADDED TO PEER REVIEW, THE PEER
REVIEWERS PLATE.
THE GOAL OF PEER REVIEW IS TO
ADVISE THE AGENCY ON THE
SCIENTIFIC MERIT OF THE
APPLICATIONS UNDER REVIEW.
NOT TO DO COMPLIANCE CHECKING
FOR THE AGENCY AND SO THAT HAS
HAPPENED AND NOT ONLY IS THAT
ERITATING TO REVIEWERS, IT
DETRACTS FROM LIKE THE MAIN GOAL
OF PEER REVIEW WHICH IS TO
ASSESS THE SCIENCE.
AND SO, WITH THICISM LIIFIED
REVIEW FRAMEWORK, WE REFRAME THE
CRITERIA TO MAKE THEM SIMPLER,
FOCUS ON 3 KEY QUESTIONS RELATED
TO MERIT, AND THEN REMOVE
CERTAIN ADMIN TRAITIVE
COMPLIANCE ITEM FROM PEER
REVIEW.
THE OTHER GOAL IS TO REDUCE OR
MITIGATE WHAT I'M CALLING
REPUTATIONAL BIAS IN THE PEER
REVIEW PROCESS.
IT'S NOT UNIQUE TO THE PEER
REVIEW, IT'S OUT THERE IN THE
BIOMEDICAL COMMUNITY BUT WE WANT
TO PREVENT AS MUCH AS POSSIBLE
THAT AM CANNING INTO THE PEER
REVIEW PROCESS AND BY THAT I
MEAN, INSTITUTIONAL REPUTATION
OR INVESTIGATOR PEDIGREE WHO
TRAINED WITH THAT KIND OF BIAS.
AND HERE AGAIN GAUZE THESE ARE
RESEARCH PROJECT GRANTS, RPGs,
AND INVESTIGATOR AND
ENVIRONMENT, TO BE WITHIN THE
CONTEXT OF AND I'LL TALK MORE
ABOUT THAT.
AND OF COURSE THE MAIN
OVERARCHING GOAL IS TO
FACILITATE PEER REVIEW AND
INSURE THAT PEER REVIEW CAN
IDENTIFY THE STRONGEST SCIENCE
FOR NIH SUPPORT.
OKAY, SO, ON THE LEFT OVER
THERE, IN THE GRAY BOX, YOU SEE
THE CURRENT REVIEW CRITERIA THAT
YOU'RE ALL WITH, THEY'RE SCORED
1-9 AND THERA OVERALL BASIC
SCORE ON THOSE CRITERIA, NOTE
THAT THE OVERALM IMPACT SCORE
RIGHT NOW IS NOT AN AVERAGE OF
THE 5 CRITERIA CORES, IT'S
SUPPOSED TO BE A WHOLISTIC FOR
OVERALL IMPACT.
STARTING WITH APPLICATIONS
STARTED ON OVER AFTER
JANUARY 25, 2025, THAT WILL MOVE
TO 3 FACTORS AND THE 3 FACTORS
ARE IMPORTANCE OF THE RESEARCH
OR PUT IT MORE SIMPLY, CAN IT BE
DONE, AND CAN IT BE DONE WELL
AND FACTOR 3 AS NCCRESOURCES AS
THE EXPERTISE AND RESOURCES IN
PLACE TO DO THE PROJECT FACTOR 1
THAT AND THE SCORE BETWEEN 1 AND
9, FACTOR 2 THAT INCLUDES THE
APPROACH AND WE'RE INCORPORATING
INCLUSION AS PART OF THIS SCORED
CRITERION OF THIS POINT, VERY
SPECIFICALLY ALL THE TABLES, ALL
OF THAT WILL BE ANSWERED IN THE
TEMPLATE WHEN REVIEWERS ARE
DOING ANALYSIS OF REVIEWER OR
FACTOR.
SO THAT GETS A SCORE OF 1-9.
AND THEN FACTOR 3, THE QUESTION
IS, ARE THE EXPERTISE AND
RESOURCES IN PLACE AND THAT'S
NOW BECOMING BINARY.
YOU KNOW, ARE THE EXPERTISE AND
RESOURCES APPROPRIATE, OR ARE
THERE ADDITIONAL EXPERTISE OR
RESOURCES NEEDED OR THERE IS A
GAP.
AND IF ADDITIONAL RESOURCES ARE
NEEDED, THEN COMMENTS ARE EXPECT
FROM THE REVIEWERS AS TO WHAT
THOSE ARE.
AND OF COURSE ANY TIME THERE ARE
GAPS IN EXPERTISE OR RESOURCES
THAT NEEDS TO AFFECT THE OVERALL
IMPACT SCORE BECAUSE IT'S BASED
ON ALL 3 FACTORS, AGAIN A
WHOLISTIC SCORE.
SO I WANT TO GIVE YOU ALET BIT
OF BACKGROUND ON HOW WE GOT
THERE.
WE DIDN'T SIT IN SOME
SMOKE-FILLED ROOM AT THE NIH AND
ENGAGED IN THREEZ CRITERIA, WE
ENGAGE WIDE A SIGNIFICANT INN
GEAJMENT WITH THE EXTRAMURAL
COMMUNITY TO AM CAN UP WITH
THESE CHANGES.
IT STARTED IN JANUARY 2020,
SORRY, GETTING AHEAD OF MYSELF,
USING THE WORK GROUPS OFF THE
CSR'S ADVISORY COUNCIL SO WE
CONVENED 2 WORKING GROUPS, 1 TO
CONSIDER NONCLINICAL TRIALS,
THAT'S THE VAST MAJORITY OF
APPLICATIONS ARE NOT CLINICAL
TRIALS AND THE OTHER GROUP AND
CLINICAL TRIALS WHICH HAD
CRITERIA AND NOTIFICATIONS, SO
WE HAD A LOT, THROUGH BLOG POSTS
AND SUCH A BEGINNING AND WE PUT
OUT OPEN ENDED QUESTIONS, HOW DO
YOU THINK WE SHOULD CHANGE PEER
REVIEW AND WHENEVER YOU
THRESHOLD THAT OUT EVERYONE HAS
AN OPINION RIGHT AND WE HEARD
FROM THEM.
WE DID A CONTENT ANALYSIS ON
WHAT WE HEARD AND WE PROVIDE
THAD TO THE ADVISORY COUNCIL
WORKING GROUP.
WE ALSO IMAIF THEM LEGAL AND
REGULATORY GUARD RAILS IN THAT
YOU KNOW THE PUBLIC HEALTH
SERVICE CODE OF FEDERAL
REGULATION REQUIRES THE NIH TO
USE 5 REVIEW CRITERIA,
SIGNIFICANT INNOVATION APPROACH
ENVIRONMENT, AND INVESTIGATOR.
BUT NIH HAS THE DISKRUGZ IN OW
THE REGULATORY AND, WOOING
INFORMATION, SO THEY WORKED VERY
HARD, THEY DID A TERRIFIC JOB,
AND HELD 11 VIRTUAL MEETINGS TO
VERY POSSIBLY DEVELOP A
FRAMEWORK AND RECOMMENDATIONS.
THAT THEN CAME TO THE FULL
ADVISORY COUNCIL OF CSR, WAS
APPROVED AND REPUBLISHED A
REPORT IN APRIL OF 2021.
THEN IT MOVED INTERNAL TO THE
AGENCY.
SO WE HAD A LOT OF SIMILAR KIND
OF PROCESS WE WENT THROUGH
INTERNALLY WITH NONCLINICAL
TRIALS, CLINICAL TRIALS, AND
WREE HAD SOME FRAMEWORK THERE IN
A YEAR AND HALF ALMOST, AND THEN
THAT GOT APPROVED BY IC DIRECTOR
AT THE TIME OF NIH LEADERSHIP.
THEN WE DIDN'T STOP THERE, WE
THENNED OKAY, WE THINK WE'RE
PROPOSING TO DO, AND PUT IT OUT
PUBLICLY, RFI, REQUEST FOR
INFORMATION.
WE GOT OVER 800 RESPONSES THERE
FROM INSTITUTIONS.
FROM INSTITUTIONS FROM
INDIVIDUALS AND SOCIETIES.
A MAJORITY WERE SUPPORTIVE.
THIS WAS A MINORITY THAT FACTOR
3 NEEDS TO BE SCORED AND THEN
THE OTHER MINORITY ON THE OTHER
END THAT THOUGHT WE DIDN'T GO
FAR ENOUGH AND NEED ON DO
PLIENDED REVIEW.
WE CAN HAVE DISCUSSIONS AS TO
WHY WE'RE NOT GOING THIS THOSE
DREKS, WE CAN CAN DO IT
AFTERWARDS OR OFFLINE.
THE MAIN THING WE GOT OUT OF RFI
IS THAT THAT CSR NEEDS TO DEVEP
REVIEWERS.
IN OCTOBER 2023 NIH ANNOUNCE THE
LAUNCH OF THE SESMLIFIED REVIEW
FRAMEWORK EFFECTIVE NEXT
JANUARY.
SO AROUND THE SAME TIME, A
LITTLE BIT TRAGGERRED BUT
PARALLEL TO THAT WE WERE ALSO
LOOKING AT THE FAIRNESS OF
REVIEW, FOR INDIVIDUALS AND RFA
FELLOWSHIP APPLICATIONS,
INDIVIDUAL TRAINING
APPLICATIONS.
THE GOAL HERE OF COURSE, FOR
THIS ENTIRE EXERCISE IS TO MAKE
SURE WE ARE IDENTIFYING AND
IDENTIFYING THE STRONGEST
CANDIDATES AND THE STRONGEST
TRAINING PLANS FOR THOSE
CANDIDATES TO DEVELOPMENT NEXT
GENERATION OF RESEARCHERS.
WE HEARD CSR AND PRIOR TO CSR,
WE HEARD CONCERNS FROM THE
SCIENTIFIC COMMUNITY THAT THERE
IS THIS TENDENCYY FOR THE
REVIEWER PROCESS, WELL
INSTITUTIONS AND SENIOR WELL
KNOWN INVESTIGATORS AND THAT'S
LEAVING OUT A LOT OF POTENTIALLY
BONE FUTURE RESEARCHERS OUT OF
THIS PROCESS.
WE DID A QUICK DATA ANALYSIS,
THIS WAS ALSO THROUGH A WORKING
GROUP OF COUNCIL AND THEY ASKED
US TO DO THIS ANALYSIS.
WE DID THIS ANALYSIS, OF 1
YEAR'S WORTH OF APPLICATIONS AND
I WILL TELL YOU, I WILL SHOW YOU
A BIT OF THE DATA BUT I WILL
ALSO TELL YOU THE BOTTOM LINE
WHICH IS YES, IT'S A SMALL
NUMBER OF INSTITUTIONS THAT
SUBMIT A VAST MAIORITY OF THE
FELLOWSHIP APPLICATIONS, OTHERS
DO NOT.
APPLICATIONS THAT COME FROM
THOSE INSTITUTIONS TEND TO DO
BETTER IN REVIEW AND THAT
THERE'S A DIRECT CORRELATION
BETWEEN THE SENIORITY OF THE
SPONSOR AND THE REVIEW OUTCOME.
LET ME SHOW YOU THE DATA.
IF YOU LOOK AT THE BAROT VERY
LEFT, ON THE Y-AXIS, THIS HAS
BEEN ACCORDING TO NUMBERS OF
APPLICATIONS.
SIXTEEN HELPED INSTITUTIONS THAT
SUBMIGHTED MORE THAN A HUNDRED
APPLICATIONS A PIECE.
THAT'S THE DISPARITY THERE.
SO WHEN YOU LOOK AT THE OUTCOME,
HERE YOU HAVE THE BLUE IS HIGH
IMPACT APPLICATIONS AND THE GRAY
IS THOSE THAT WERE NOT
DISCUSSED.
YOU LOOK AT INSTITUTIONS,
APPLICATIONS FROM INSTITUTIONS
THAT SUBMITTED 1-10
APPLICATIONS, THE SHORT SMALLER
NUMBER OF HIGH IMPACT
APPLICATIONS AND A LARGER NUMBER
NOT DISCUSS EXCLUDE IT GOES IN
THE OPPOSITE DIRECTION FOR THOSE
INSTITUTIONS THAT SUBMIT MORE
THAN 76 FELLOWSHIP APPLICATIONS
EVERY YEAR.
RIGHT?
AND THEN THIS, THIS IS A
SLIGHTLY BUSY BUT JUST LOOK AT
THE TOP 4 WHICH TELLS YOU A
SINGLE SPONSOR SO IF YOU'RE IN
AN ASSISTANT PROCESSOR SPONSOR
THAT YEAR, THAT FELLOWSHIP
APPLICATION FROM AN ASSISTANT
PROFESSOR SPONSOR WHERE THE
CANDIDATE HAS ANN ASHES CYST ANT
PROFESSOR SPONSOR WILL BE SCORED
PNEUMOTHORAXIS% OF THE TIME, IF
IT'S ASSOCIATE PROFESSOR IT'S
MORE, YOUR FULL PROFESSOR 39.7
AND THEN THAT LAST 1 SAYS OTHER
WHICH SEEMS TO DO EVEN WETTER
THAN FULL PROFESSORS SO WE WANT
TO KNOW WHAT THAT WAS.
WE DUG INTO THAT AND DEANS AND
PROVOST.
THOSE ARE THERE TITLES, THAT'S
HOW IT WORKED OUT.
IF YOU LOOK AT THE BOTTOM, THAT
MULTIPLE SPONSORS AGAIN, IF
YOU'RE ALL ASSISTANT, IF YOU
HAVE 3 ASSISTANT PROFESSOR
SPONSORS, IT'S A PRETTY BAD
OUTCOME FOR THE CANDIDATE.
IF YOU HAVE ALL DEANS AND
PROVOST, THEY DO PRETTY DARN
WELL.
SO YOU KNOW THE DATA SUPPORTED
COMMUNITY CONCERNS.
SO THE FELLOWSHIP REVIEW
CRITERIA ARE CHANGING AND WE
DID, I'M NOT GOING TO WALK
THROUGH THE WHOLE PROCESS, AND
SIMILAR PROCESS OF GETTING A
BROADER COMMUNITY INPUT WORKING
GROUP, INTURNOVERRAL
DELIBERATIONS AT NIH AND SUCH
AND AN RFI THAT WENT OUT.
AND SO THE CURRENT YOU CAN SEE
OVERALL IMPACT SCORE IS BASED ON
THOSE 5 CRITERIA.
ON THE LEFT WHERE THESE TYPES OF
BIASES COME IN IS IN THE SECOND
1 THAT SAYS SPONSORS AND
COLLABORATOR ANDS CONSULTANT AND
THAT LAST 1, THAT SAYS
INSTITUTIONAL ENVIRONMENT AND
COMMITMENT TO TRAINING.
WE WANT THESE TO BE CONSIDERED
IN THE CONTEXT OF THE FELLOWSHIP
APPLICATION AND HOW THIS
ADVANTAGES THE CANDIDATE BUT
IT'S--THAT'S WHERE SOME OF THESE
COMMENTS COME IN THAT LEAD TO
THE OUTCOMES THAT YOU SAW.
SO THE FINAL APPROVED UPON
CHANGES COMING AGAIN STARTING
JANUARY 2025 THERE ARE THERE
WILL BE 3 MIN CRITERIA FOR
FELLOWSHIP 1 IS CANDIDATE
PREPAREDNESS AND POTENTIAL.
RESEARCH TRAINING PLAN
UNTOUCHED.
IMPORTANT, NEEDS TO BE IN THERE.
AND THE THEN THE THIRD 1 IS
COMMITMENT TO CANDIDATE AND THIS
IS WHERE THE SPONSOR AND THE
INSTITUTIONAL ENVIRONMENT ARE
INCORPORATED SO THAT THEY'RE
REVIEWED IN THE CONTEXT OF THE
CANDIDATE AND HIS OR HER
DEVELOPMENT.
ONE CHANGE OF THE EXTRAMURAL
FUNDING OF THE SPOPSOR IS NOT
CONSIDERED BY PEER REVIEW
ANYMORE BECAUSE WE SAW THESE
COMMENTS YOU WOULD SEE.
SOMEONE HAS 4 RO-1S THAT SUBMIT
SPONSORS OR SOMEONE HAS 3 OR 2.
WROA DON'T WANT TO FOCUS THAT
THAT BECAUSE THAT MAKES NO
SENSE.
REVISED NUMBER OF CHANGE,
THERE'S EXPECTATION OF A
TARGETED APPLICATION SUBMISSION,
SO IT REDUCES BOILER PLATE
LANGUAGE, RIGHT, THOSE
INSTITUTIONS THAT MASS PRODUCE
THESE APPLICATIONS THERE'S A LOT
BOILER PLATE LANGUAGE, WE NEED
IT TO BE TARGETED AT THE
SPECIFIC CABBEDIDATE AND GRADES
ARE NO LONGER GOING TO BE
REQUIRED BECAUSE THEY WERE NOT
SEEN AS A GOOD INDICATOR OF
SUCCESS IN RESEARCH MUCH SO
WHAT'S HAPPENING RIGHT NOW IS
THERE'S A TREMENDOUS WORK
HAPPENING RIGHT NOW ACROSS THE
AGENCY AND NIH AS YOU CAN SEE,
WE HAVE, YOU KNOW MANY THINGS
THAT HAVE TO CHANGE FOR THINGS
TO BE AVAILABLE AND START
NOTHING JANUARY AND THAT IS WE
HAVE A TRANSNIH COMMITTEE IN
BOTH FELLOWSHIPS AND RPGs THAT
HAS A TREMENDOUS AMOUNT OF
EXPERTISE.
IT HAS REPRESENTATIVES FROM ALL
OVER NIH AND EXPERTISE IN REVIEW
AND COMMUNICATIONS, ERA SYSTEMS
HAVE TO BE UPDATED FOR SCORING
AND FOR EVERYTHING ELSE.
POLICY TRAINING AND STAFF'S
TRAINING, SO THERE'S A LOT OF
WORK HAPPENING WITHIN THE AGENCY
OF THIS KIND.
THE MAJOR LAUNCH OF TRAINING
WITH REVIEWERS AND CHAIRING WILL
NOT OCCUR UNTIL SPRING OF 2025
AND THAT BECAUSE THE LAST USING
OF THE OLD CRITERIA WILL HAPPEN
IN FEBRUARY AND MARCH OF 2025.
IF WE LAUNCH ANY TRAINING PRIOR
TO THAT, IT WILL CONFUSE 19,000
PEOPLE SO WE'RE GOING TO HOLD IT
UNTIL THEY'RE DONE WITH THEIR
PREVIOUS CRITERIA AND REVIEWS
AND THEN WE BRAN TO DO PRETTY
IMREASESSIVE TRAINING FOR
REVIEWERS BUT OUR STAFF ARE
GETTING TRAINED NOW AND WE'RE
DOING LITTLE OUTREACH LIKE THIS
TO MAKE PEOPLE AWARE OF THE
CHAIRVELGS COMING.
IF YOU WANT TO LEARN MORE, THEIR
1 STOP SHOP SITE FOR RPGs AND
FELLOWSHIP.
IF YOU HAVE A QUESTION, THEIR
DEDICATED E-MAIL BOXES WHERE
ANYONE CAN SEND A QUESTION AND
WE WILL RESPOND.
AND THESE HAVE PEBINARS AND
RECORDED WEBINARS WE'VE ALREADY
DONE.
MANY FAQs UPDATED CONSTANTLY.
THERE IS A SEPTEMBER 19th
WEBINAR FOR FELLOWSHIPS.
I KNOW WOOF THE CHALLENGES FOR
FELLOWSHIPS AND GETTING MORE
APPLICATIONS FROM A BROADER
RANGE OF INSTITUTIONS SO
ANYTHING YOU CAN DO TO ENCOURAGE
FELLOWSHIP APPLICATION
SUBMISSIONS WOULD HELP.
YOU WANT TO KNOW MORE ABOUT
CSR'S INITIATIVE, WE HAVE A
WEBSITE ABOUT A TRANSLATIONAL
RESEARCH TEEJIC PLAN AND A
NUMBER OF DATA AND ANALYSIS ON
WHAT OR WHY WE'RE GOING TO
IN-PERSON AND ZOOM MEETING AND
ALL OF THAT.
DEMOGRAPHICS AND EVERYTHING THAT
ARE ADVISORY COUNCIL IS DOING,
HAPPY TO TAKE QUESTIONS NOW OR
CONTACT ME LATER DIRECTLY.
THANK YOU.
[ APPLAUSE ]
SNSH WE HAVE TIME FOR 1 OR 2
QUESTIONS.
>> SO THANK YOU VERY MUCH.
I THINK THIS IS REALLY GOING TO
BE A GOOD CHANGE.
I DID HAVE A QUESTION ABOUT
REMOTE VERSUS IN PERSON, THAT
WAS A QUESTION I HAVE AS HAVING
DONE REMOTE DISCUSSIONS IT FELT
LIKE CANDIDATES GOT A DISSERVICE
FROM THAT SO I WAS INTERESTED IN
HOW THAT WAS MOVING.
>> THANKS FOR THAT QUESTION, SO
YEAH, IF YOU GO TO OUR WEBSITE,
WE ACTUALLY HAVE A DIFFERENT
NUMBER OF REPORTS AND ANALYSIS
LIKE WE'VE DONE, REVIEWER
EXPERIENCE, DO THEY FEEL
ENGAGED, DO THEY FEEL LIKE
RANKED APPLICATIONS
APPROPRIATELY IN SETTINGS, WE'VE
ALSO DONE OBJECTIVE ANALYSIS TO
LOOK AT CORE DISTRIBUTIONS, LOOK
AT DIVERSITY OF RECRUITMENT FOR
ZOOM VERSUS IN PERSON, SO IT'S
ALL THERE.
THE BOTTOM LINE IS THERE'S NOT A
DIFFERENCE.
THE PREFERENCE ALSO VARIES, I
MEAN A LOT OF PEOPLE SAY, I
PREFER IT IN PERSON MYSELF BUT
WE DO LOSE A LOT OF PEOPLE.
OUR FOCUS HERE RIGHT NOW IS TO
GET THE BROADEST RANGE OF
REVIEWERS WITH THE RIGHT
EXPERTISE TO WEIGH IN.
SO RIGHT NOW WE'RE DOING 1
IN-STUDY SECTION PER YEAR, THE
SECOND 1 COULD BE A HYBRID AND
ULTIMATELY I THINK WHAT WE NEED
TO GET TO IS 3 HYBRID MEETINGS A
YEAR.
SO WE'RE REALLY DOING A LOT OF
HYBRID TECHNOLOGY AND YOU CAN
LOOK AT OUR WEBSITES I DON'T
KNOW IF I HAVE THE DAT IN THE
APPENDIX OR NOT BUT HAPPY TO
SEND THAT TO YOU AND LOOK AT THE
RAW DAILY BASIS THEA SPEAKING OF
HIBRIDE, 1 OF OUR COUNCIL
MEMBERS IS VIRTUAL I DON'T KNOW
IF YOU CAN SEE DR. BARKIN, SHE'S
UP ON THE SCREEN.
>> HI, THANK YOU, I'M REALLY
SIGHTED ABOUT HOW THOUGHTFUL,
THIS IS A GIANT EFFORT YOU'VE
BEEN FOR THIS SHIFT.
HOW WILL WE KNOW IF THIS IS
WORKING.
WHAT'S THE METRIC FOR SUCCESS
AND THEN THE SECOND IS, I THINK
MANY OF US, AND I'VE BEEN
FORTUNATE TO SERVE ON STUDY
SECTIONS AS WELL AS SUBMIT
GRANTS, FEEL THAT THERE ISN'T AS
MUCH RELIABILITY, YOU CAN GET A
REALLY DIFFERENT ANSWER
DEPENDING ON WHICH STUDY SECTION
YOU'RE IN AND EVEN IF YOU
RESPOND TO COMMENTS A VERY
DIFFERENT ANSWER FOR REVISIONS,
AND SO, I'M JUST WONDERING ABOUT
THAT, ARE WE STRIVING FOR MORE
RELIABILITY AND OUTCOMES.
SO SORT OF 2 RELATED QUESTIONS
IF YOU WOULD.
>> FIRST LET ME TALK ABOUT
ANALYSIS.
THERE ARE A COUPLE WAYS CAN YOU
APPROACH ANALYSIS, AND THAT'S
WHAT WE'RE AIMING TO DO ALTHOUGH
THE DATA WILL BE MESSY BECAUSE
THERE ARE MULTIPLE EFFORTS GOING
ON AT THE SAME TIME AND I JUST
SHOWED YOU A FEW OF OUR
INITIATIVES, BROADENING THE
PANELS AND TRYING TO GET, YOU
KNOW MANY CHANGES HAPPENING IN
PEER REVIEW, SO HOPEFULLY WHAT
WE WILL SEE IS A CHANGE IN THE
OUTCOMES OF PEER REVIEW TO
REPRESENT A BROUGHTER RANGE OF
INVESTIGATORS AND INSTITUTIONS.
THAT'S 1 SORT OF OBLIGATIONS
YECTIVE MEASURE, ABOUT YOU THAT
AGAIN, THERE ARE A NUMBER OFESTS
HAPPENING AT NIH AND ICs TO
PROMOTE APPLICATIONS FROM A
BROAD RANGE OF INSTITUTIONS SO
WE DON'T KNOW IF THAT'S BECAUSE
OF PEER REVIEW OR NOT, THESE
CHANGES OR NOT NOT.
THAT'S 1.
ONE IS WE WILL BE SURVEYS, WE
HAVE A STRONG DATA OPERATION AND
A SURVEY OPERATION, WE WILL
SURVEY OUR REVIEWERS, OUR CHAIRS
AND PERHAPS EVEN APPLICANT
SURVEYS TO SEE HOW THINGS ARE
GOING AND THIS IS NOT SORT OF
SET IN STONE IF WE NEED TO MAKE
A MIDCOURSE ADJUSTMENT, WE DO
THAT BUT WE IT WILL TAKE 2 OR 3
LOWNDS FOR US TO BE SOCIALIZED
ENOUGH FOR US TO REALLY SEE WHAT
THE IMPACT IS.
RELATED TO AC1s, I THINK
YOU'RE TALKING ABOUT THE AMENDED
APPLICATIONS, YEAH.
YOU KNOW, THIS IS ALWAYS A
PROBLEM WHEN YOU HAVE PEERS
DOING REVIEWS AND THOSE EXACT
SAME PEERS DON'T SHOW UP AT
EVERY MEETING OR YOU CHANGE
STUDY SECTIONS, BUT THAT'S ALSO
THE PLUS OF PEER REVIEW, FROM
THE AGENCY PERSPECTIVE, BECAUSE
WHAT WE'RE TRYING TO DO IS
IDENTIFY THE STRONGEST SCIENCE
AND MAKE IT MAKE SENSE WITH THE
SCORES WE'RE SEEING IN THE
REVIEW.
FRANK LYE WHAT WE'RE SIGHING IF
WE LOOK AT THE DATA THAT'S 4
YEARS OLD AT THIS POINT, IF YOU
GET THE SAME REVIEWERS FOR DAY 1
AS YOU DID FOR DAY 0, THE CORE
IS BETTER THAN IF YOU GET 1
PREVIOUS REVIEWER.
I I'M MOT SURE IF THAT'S
NECESSARILY A FAIRER OUTCOME.
RIGHT IN WHEN YOU LOOK AT THE
NUMBER OF APPLICATIONS
MR. IICATIONS WE GET, THIS IS
NOT SUPPOSED TO BE SORT OF A
CONTRACT PROCESS WHERE WE RIGHT
BACK AND SAY, AJUST THIS AND
THEN NEXT TIME YOU WILL GET A
BETTER SCORE, THAT SAID IF
THERE'S UNFAIRNESS IN THAT
SECOND CRITIQUE, WE WOULD LIKE
TO HEAR ABOUT IT THAT'S WHAT
THAT DIRECT MAIL BOX IS FOR, THE
EARLIER WE HEAR BACK FROM YOU,
IF YOU THINK THERE WAS SOME
UNFAIRNESS OF THE ASSESS, THE
EASIER IT IS FOR US TO FIX IT.
I KNOW AUTONOT SATISFYING BUT
THAT'S--YOU KNOW.
>> I WOULD SAY I'M NOT PROPOSING
THERE IS UNFAIRNESS, I THINK
THERE'S INCONSIEVENCY AND IT'S
INTERESTING, OF COURSE WE'RE
HUMAN SO WE ARE CONSISTENTLY
INCONSISTENT AS HOW MANS AND YET
IN SCIENCE WE'RE STRIVING FOR
RELIABILITY, SO IDEALLY YOU
WOULD ENVISION THE SAME IDEA IN
FRONT OF YOUR PEERS SHOULD
BEHAVE FAIRLY SIMILARLY AND
ESPECIALLY ONCE YOU RESUBMIT IT.
SO I WAS JUST CURIOUS IF THAT'S
1 OF OUR--IF WE'RE ASPIRING FOR
THAT AS AN OUTCOME.
>> INTERRELATED RELIABILITY, WE
CAN HAVE A LONGER DISCUSSION
ABOUT THAT.
WE CONSIDERED IT QUITE A BIT.
WE LOOKAD AT DATA, WE'VE
LOOKEDDA THE OUTCOMES.
I UNDERSTAND THE SCIENTIFIC
PERSPECTIVE BUT THE IDEAL THING
WOULD BE TO PUT IT THROUGH AI,
BUT THERE ARE SO MANY DOWN
SIDES, IT WILL BE RELIABLE, VERY
CONSISTENT BUT LET'S NOT KID
OURSELVES, NOVEL IDEAS WILL NOT
MAKE IT THROUGH BECAUSE IT'S
BASED ON DATA OUT THERE.
PLUS THERE ARE BIASES THAT THEN
GET HARD WIRED SO WE LOOKEDDA
THE A LOT OF DIFFERENT THINGS WE
CAN HAVE A OFFLINING
CONVERSATION ABOUT RELIABILITY
BUT FRANKLY MY PITCH HAS ALWAYS
BEEN WE DON'T NEED AC1, BECAUSE
WHAT AC1S SET UP DO IS SET UP
FALSE APPLICATIONS FOR OUR
APPLICANTS.
PEOPLE EXPECT THINGS TO IMPROVE
WITH EACH ADDITIONAL ITERATION,
LET'S JUST HAVE THE A0S AND A20S
OR WHATEVER WE HAVE, YOU KNOW
CAN CONTINUE TO RESUBMIT AND
IMPROVE THE APPLICATION AS
NEEDED.
>> THANK YOU.
NANY OTHER QUESTIONS IN.
>> CYNTHIA?
I MATE HAVE MISSED THIS, BUT ARE
THE CHANGES TO THE
F-APPLICATIONS GOING TO BE
SIMILAR TO K-GRANTS OR--
>> A CSR DOESN'T REVIEW A LOST
CASE, THOSE ARE DONE INCERNALLY
BUT I THINK THERE ARE SOME
SIMILARITIES, THE LETTERS OF
REFERENCES ARE THE SAME.
ALL OF THAT IS IN OUR FAQs IF
YOU ANY TO THAT SITE AND GO TO
FAQs, THE ANSWERS TO THE
Q-QUESTIONS THAT ARE IC
COLLEAGUES HAVE HELPED US
DEVELOP.
>> OKAY, WELL, THANK YOU NONI
ABOUT THE REALLY IMPORTANT
INFORMATION COMING TO THE NIH
GRANT APPLICATIONS PLIRICATION
PROCESS, WE APPRECIATE YOU
COMING ONCE AGAIN TOEUR ADVISORY
COUNCIL--TO OUR ADVISORY COUNCIL
BUT WE HAVE A NUMBER OF CHAIRS
HERE ESPECIALLY ON OUR COUNCIL
AND I THINK EVERYBODY'S GOING TO
SPREAD THE WORD.
NI APPRECIATE THAT.
THANK YOU VERY MUCH.
NAND TODAY WE'RE GOING TO HEAR
AN UPDATE ON THE INITIAL
PROGRESS BEING THE 2025 NRIERKS
CHD HELP THAT WILL HELP TO GUIDE
THE RESEARCH WE SUPPORT.
OUR MOST RECENT TRANSLATIONAL
RESEARCH TEENLIC PLAN WAS
PUBLISH INDEED 2020 AND
REPRESENTED THE FIRST TIME NICHD
SYSTEMATIC LOAMACYY CONSIDERED
ITS RESEARCH DIRECTION IN MORE
THAN REALLY 2 DECADES.
NOW 4 YEARS LATER IT'S TIME TO
PREPARE THE NEXT 5 YEAR LAN.
LAST FALL WE LAUNCHED THE
PROCESS TO REFRESH THE NICHD
STRATEGIC PLAN TO--EXCUSE
ME--REFLECT THE INSTITUTE'S
PROGRESS AND EMERGING AREAS OF
OPPORTUNITY.
DR. STEPH ANE PH ILOGENE, WILL
NOW OUTLINE THE WORK HIS OFFICE
CAN IS LEADING TO DEVELOP THE
UPDATED TRANSLATIONAL RESEARCH
STIGIC PLAN.
OVER TO YOU.
>> THANK YOU DR. BIANCHI, IT'S A
GREAT PLEASURE TO BE HERE AND
PARTICULARLY PLEASED AT THE
GREAT MILESTONE WE'VE REACHED IN
THE PUBLICATION OF THE RFI, JUST
LAST WEEK.
CAN I HAVE THE NEXT SLIDE.
>> THE PLAN FOR THIS AFTERNOON
IS TO PROVIDE A UPDATE ON THE
STRATEGIC PLAN REFRESH
INCLUDINGA OVERVIEW MUCH THE
OBLIGATIONS YECTIVES THAT ALIEB
WITH THE 5 SCIENTIFIC RESEARCH
GOALS.
WE HOPE TO GO THROUGH THE
PRESENTATION AND ALSO ALLOW
AMPLE TIME FOR ANY COMMENTS OR
REFLECTIONOT RECENTLY PUBLISHED
RFI.
NEXT SLIDE, PLEASE.
MANY OF YOU WILL ALREADY BE
FAMILIAR WITH OUR STRATEGIC
PLAN, WHICH IS FOCUSED ON
SCIENTIFIC RESEARCH AREAS,
RESEARCH AND MANAGEMENT AND
ACCOUNTABILITY.
AND WITHIN EACH OF THESE FOCUS
AREAS THERE ARE GOALS TO
COMMUNICATE NICHD'S PRIORITIES
OVER THE NEXT 5 YEARS.
WE'RE USING THE GOALS FROM THE
2020 PLAN AS A FOUNDATION FOR
OUR REFRESH.
MAKING UP DATES BASED ON OUR
PROGRESS TO DATE AND EMERGING
PRIORITIES.
TODAY WE WILL FOCUS ON THESE
PLANS, WE HAVE 3 GOALS, GLOBAL
INFECTIONS, INFECT YOWZ DECS AND
PREVENTION AND NUTRITION.
WE WILL ALSO ADD RESEARCH
TRAINING WITH THE REFRESH PLAN.
THE PRIMARY FOCUS OF OUR EFFORTS
THUS FAR HAS BEEN UPDATING THE
SCIENTIFIC RESEARCH OBLIGATIONS
YECTIVES.
ALL FUTURE EFFORTS WILL FOCUS ON
BUILDING OUT OUR PLAN FOR
IMPLEMENTING AND MAKING PROGRESS
ON THESE OBLIGATIONS YECTIVES
OVER THE NEXT--OBLIGATIONS
-OBJECTIVES
FOR THE NEXT 5 YEARS.
NEXT SLIDE, PLEASE EMPLOY OUR
REFRESH IS PROVIDED BY KEY
KNOLLS AND CORE PRINCIPLES.
THOSE WERE ESTABLISHED BY
DR. BIANCHI AT THE START OF OUR
PLANNING EFFORTS BACK IN 2018
AND REMAINED THE GUIDING
PRINCIPLES OF THE CURRENT
REFRESH PROCESS.
GOALS ARE TO IDENTIFY WHERE
NICHD SHOULD LEAD, PARTNER AND
COLLABORATE, AND ALSO INFORM
FUTURE INVESTMENTS.
THE CORE GUIDING PRINCIPLES AND
REACHING THOSE GOAL VS BEEN TO
DESIGN AND IMPLEMENT A PROCESS
THAT IS TRANSPARENT, THAT IS
DATA DRICH WITH EVIDENCE BASED
DECISION MAKING, AND INVOLVES
STAKEHOLDER PARTICIPATION.
NEXT SLIDE, PLEASE.
THE REFRESH HAS BEENAIN
INSTITUTE WIDE COLLAB ARATIVE
PROCESS INVOLVING INTRAMURAL
SCIENTISTS AND EXTRAMURAL
PROGRAM OFFICERS AS WELL AS TEAM
MEMBERS FROM THE IMMEDIATE
OFFICE OF THE DIRECTOR.
NICHD STAFF HAS BEEN LEADING
THIS PROCESS.
WE'VE ENCOURAGED AND EXPERIENCE
A GREAT DEAL OF PARTICIPATION
AND ENGAGEMENT.
AT THE OUTSET, WE ESTABLISHED
SEVERAL WORKING GROUPS CHARGED
WITH GENERATING IDEAS FOR THE
REFRESH FIND.
WE HAD 5 SCIENTIFIC RESEARCH
WORKING GROUPS 1 FOR EACH OF THE
5 RESEARCH GOALS AND 1 FOR
SCIENTIFIC LEADERSHIP AND
ACCOUNTABLE WERE ENCOURAGED TO
COLLECT INPUT AND PERSPECTIVES
FROM THEIR COLLEAGUES THROUGHOUT
THE PROCESS, NEXT SLIDE, PLEASE
EMPLOY SINCE THE ESTABLISHMENT
OF THESE WORKING GROUPS THEY
SPENT THE LAST SEVERAL MONTHS
CONSIDERING UPDATES TO THE
SCIENTIFIC RESEARCH OBJECTIVES.
REVIEWING DATA AND REPORTS FROM
THE PROGRESS MADE SINCE 2020 AS
SOME OF YOU MAY RECALL, ONCE THE
2020 PLAN WAS PUBLISHED IN
PARTNERSHIP WITH THE NIH
DIRECTORS OFF I GUESS OF
EVALUATION, PERFORMANCE
APPROXIMATE REPORTING WE
DEVELOPED A TRANSLATIONAL
RESEARCH STIGIC TRACKING OR
PLANNING TOOL OR START FOR
NICHD, AND LEVERAGING THIS NEW
TOOL, WE'RE ABLE CONDUCT THE
DETAILED ASSESS OF THE
INSTITUTES PERFORMANCE ACROSS
ALL OUR STRAY JECTORY TEENLIC
GOALS USING DATA FROM 2020,
THROUGH 2023 AND REPORTS ON OUR
ACCOMPLISHMENTS FUNDING TREBD
LINES AND REMAINING GAPS IN THE
SCIENCE WERE SHARED WITH THE
WORKING GROUPS TO INFORM THE
CONVERSATIONS AND PROPOSALS AND
HOW TO BEST REFRESH THE RESEARCH
OBLIGATIONS YECTIVES.
IN ADDITION TO RECEIVING
INFORMATION ON THE TIMELINES OF
MAJOR PROGRAMS, THE FUNDING
OPPORTUNITY ANNOUNCEMENTS THAT
SUPPORT THE CURRENT PLAN,
FUNDING TRENDS AND THE MUCH
ACTIVITIES, THE WORKING DPROWPS
WERE ALSO PROVIDED INFORMATION
ON THE CROSS CUTTING THEMES, AND
THE EXTENT THEY ARE REPRESENTED
IN THE GOALS, NEXT SLIDE,
PLEASE.
NICHD IPT GREATER TENSIONALLY
BUILT IN KEY TIMES WHERE
CEREBELLUMS TERNAL PARTICIPATION
AND A PLANNING PROCESS WOULD BE
CRITICAL.
IN JEAN, WE HELD 5 EXTERNAL
LISTENING SECTIONS, 1 FOR EACH
OF THE SCIENTIFIC RESEARCH
GOALS, THESE SESSIONS WERE VERY
STRUCTURED AND FOCUSED ON
RECEIVING PRELIMINARY FEEDBACKOT
DRAFT PRIORITIES AND WERE
ATTENDED BY EXTERNAL RESEARCHERS
WITH EXPERTISE IN THE RESEARCH
GOAL AREAS.
AND TODAY'S COUNCIL
PRESENTATION, ALSO REPRESENTS
ANOTHER KEY TIME FOR ENGAGEMENT
ALONG WITH THE PUBLISHED RFI
WHICH WE'LL BE REVIEWING
SHORTLY.
YOUR FEEDBACK TODAY IN VIEW OF
THE RFI WILL GREATLY APPRECIATE
EXCLUDE WILL BE THE FINAL
UPDATES TO THE STRATEGIC PLAN
AND THE COMING MONTHS.
NEXT SLIDE, PLEASE.
THIS IS THE TIMELINE WE'RE
WORKING WITH.
AND AS CAN YOU SEE WE'RE WELL ON
OUR WAY TO THE 9AL UPDATES OF
THE 2025 STRATEGIC PLAN SINCE
NOVEMBER 2023 OUR INSTITUTE HAS
BEEN HARD AT WORK IDENTIFYING
UPDATES ON THE 2020 STRATEGIC
PLAN, GATHERING EXTERNAL
FEEDBACK AND INPUT AND GATHERING
INTERNAL CONSENSUS ON THESE
UPDATES.
WE'RE AIMING TO RESEARCH THIS IN
EARLY 2025.
I WILL NOW WALK THROUGH THE
SPECIFIC UPDATES TO THE
SCIENTIFIC RESEARCH OBJECTIVES,
NEXT SLIDE.
FIRSTLY WORKING WITH THE CROSS
CUTTING THEMES WITH EACH OF THE
RESEARCH GOALS INCLUDING
CONSIDERATION OF RESEARCH
TRAINING, CAREER DEVELOPMENT OF
THE NEXT GENERATION OF THE
SCIENTIFIC WORKFORCE.
THIS HAS BEEN AN INTEGRAL PART
OF THE REFRESH PROCESS AND WE
WANTED TO EMPHASIZE THAT
UPFRONT.
CROSS CUTTING THEMES WERE
INSURED FOR THE OVER ALL ROLL
OUT.
WE WILL NOW GO OVER THE UPDATED
OBJECTIVES.
THE FOLLOWING ARE DRAFT
OBLIGATIONS YECTIVES FOR GOAL 1
WHICH FOCUSES ON THE MOLECULAR
CELLULAR AND STRUCTURAL BASIS OF
DEVELOPMENT.
THIS GOAL FOCUSES FIRSTLY ON
UNDERSTANDING HOW INTRINSIC
FACTORS CONTRIBUTE TO EARLY
DEVELOPMENT.
IT ALSO FOCUSES ON EXPLORING HOW
EXTRINSIC FACTORS CAN INFLUENCE
DEVELOPMENT PARTICULARLY AS THEY
RELATE TO CONGENITAL ANOMALIES,
NEURODEVELOPMENT DISORDERS AND
DEVELOPMENTAL DISORDERS.
WE ALSO ENHANCE COLLABORATIVE
DEVELOPMENTAL BIOLOGY RESEARCH
TO ENHANCE OUR ANALYTERAL AND
VALIDATION CAP ABILITY ALONG
WITH TOOLS AND TECHNOLOGIES TO
ANALYZE AND VALENTINEDICATE
LARGE SCALE DATA DERIVED MODEL
ISS RESEARCH AND EMERGING
SCIENTIFIC AREAS.
LAST 1, SINGLE CELL GENOMICS
PROTEOMICS AND MET TAB O LOAMICS
TO PROVILE YEEN AND ARE TEEN
EXPRESSION AND REGULATION AND TO
CHARACTERIZE REGULATORY NOTEBOOK
WORK NETWORKS ACROSS TISSUES AND
TIME DURING DEVELOPMENT.
A REKEY OBJECTIVE HERE IS TO
CAPITALIZE ON NEW OPPORTUNITIES
TO IMPROVE OUR UNDERSTANDING OF
REPRODO YOU RECOLLECTIVE STAGES
ACROSS THE LIFE CYCLE.
WITH PARTICULAR EMPHASIS ON
CRITICAL WINDOWS SUCH AS
PUBERTY, ANCHLIO PAUSE AND
PERIMENOPAUSE.
WE ALSO AIM TO CHARACTERIZE
PROPRODUCTIVE AGING AND ITS
INPACT ON ARE PRODUCTIVE AND
GYNECOLOGIC OUTCOMES.
PARTICULARLY THE INFERTILITY.
ADDITIONALLY, THIS GOAL SEEKS TO
IDENTIFY BIOLOGIC AND
ENVIRONMENTAL FACTORS THAT CAN
LEAD OR CONTRIBUTE TO IDIO
PATHIC INFERTILITY.
WE FURTHER HOPE TO EXPAND THESE
METHODS TO STIMULATE FERTILITY
AND DEVELOP CONTRACEPTION.
THIS IS ALSO BIOLOGIC MECH
NIVENLS USHED LYING HOW
GENERALIZED PELVIC PAIN AND GUIN
OICOLOGGIC CONDITIONS.
COMPREHEND.
NEXT SLIDE, PLEASE.
WE AILS HOPE TO IDENTIFY ISHT
VENTIONS FOR THE TREATMENT OF
GUIN OICOLOGGIC CONDITIONS AND
ASSESS THE IMPACT OF NEW AND
EXISTING TREATMENT APPROACHES ON
GYNECOLOGIC HEALTH DISPARITIES.
AND LASTLY FOR GOAL 2, WE HOPE
TO IMPROVE OUR UNDERSTANDING OF
THE MULTILEVEL FACTORS OF
CONTRACEPTIVE USE AND NONUSE AND
INCLUDING PREFERENCES OR
SPECIFIC METHODS, THIS KNOWLEDGE
WILL ALSO BE USED TO DEVELOP NEW
CONTRACEPTIVE OPTIONS OR ADVANCE
OUR KNOWLEDGE OF THE EFFECTS OF
CONTRACEPTIVES ON HUMAN HEALTH.
NEXT SLIDE, PLEASE.
>> THE FOLLOWING ARE DRAFT
OBJECTIVES FOR GOAL 3 WHICH SETS
HEALTHY PREGNANCY AND WELLNESS.
HERE WE HOPE TO IMPROVE PREGFOR
INSTANCEY OUTCOMES AND MAXIMIZE
WOMEN AND CHILDREN.
OUR FIRST OBJECTIVE IS TO
ENHANCE COLLABORATIONS TO
ADVANCE OUR KNOWLEDGE AND
BEDDING OF THE MECHANISMS AND
POTENTIAL CAUSES OF PRETERM
BIRTH, AND DEVELOP EFFECTIVE
PREVENTION APPROACHES.
WE ALSO HOPE TO IMPROVE THE
LONG-TERM OUTQUM OF INFANTS BORN
PRETERM OR INFANTILE GROWTH,
THIS WILL HELP DETERMINE THE
ROLES OF MATERNAL FACTORS,
SOCIAL REDERMINANTS OF HEALTH,
VIERMAL AND NUTRITIONAL FACTORS.
THIS GOAL ALSO INVOLVES
EPITHELIAL GREATING AND
ANALYZING DIVERSE TYPES OF DATA
TO PERFORM INTERVENTIONS FOR
ADVERSE MATERNAL CONDITIONS AND
PREGNANCY COMPLICATIONS.
FURTHER, THIS GOAL ALSO CALLS
FOR SUPPORTING COMMUNITY
INFORMED RESEARCH TO DEVELOP
MATERNAL HEALTH INTERVENTIONINGS
THAT ARE WIDELY APPLICABLE AND
ADDRESS HEALTH DISPARITIES.
NEXT SLIDE.
THIS NEXT OBLIGATIONS YECTIVE
SUPPORTS OUR CONTINUED EFFORTS
TO FURTHER UNDERSTAND THE
PLACENTA USING INNOVATIVE BASIC
AND TRANSLATIONAL SCIENCE
APPROACHES EMPLOY THIS INCLUDES
UNDERSTANDING THE PLACENTA'S
ROLE IN PREGNANCY OUTCOMES AND
THE LONG-TERM HEALTH OF THE
MOTHER AND INFANT.
FURTHER, WE PLAN TO SUPPORT THE
CONTINUED TWEPMENT OF
TECHNOLOGIES AND METHODS FOR
HUMAN PLACENTAL MODELS ACROSS
GUESTATION AND TEST THE ABILITY
OF EMERGING TECHNOLOGIES TO ARK
ASSESSES PLACENTAL HEALTH.
THIS GOAL IS ALSO FOCUSED ON
DEVELOPING PREVENTION STRATEGIES
FOR LABOR AND DELIVERY
COMPLICATIONS THAT CONTRIBUTE TO
MATERNAL MORBIDITY AND
MORTALITY.
LASTLY WE PLAN TO FOCUSED ON NEW
OPROACHS TO MITIGATING MATERNAL
AND PATTEDERNAL RISK FACTORS FR
PREGPRANCEY THAT EXTEND THROUGH
THE POSTPARTUM PERIOD AND
BEYOND.
THE NEXT SLIDE.
THE FOLLOWING ARE DRAFT
OBJECTIVES FOR GOAL 4 WHICH
FOCUSES ON IMPROVING CHILD AND
ADOLESCENT HEALTH AND A
TRANSITION TO ARK DULT HOOD.
OUR FIRST--HERE WE ALSO HOPE TO
LEARN HOW SOCIAL AND
ENVIRONMENTAL FACTORS AFFECT
CHILD AND ADOLESCENT HEALTH AND
TO APPLY IN KNOWLEDGE AND
DEVELOPING NEW EARLY
INTERVENTION APPROACHES AND
IMPROVED EFFECTIVENESS OF
EXISTING 1S.
THIS GOAL ALSO FOCUSESS ON
PREVENTION, TREATMENT,
IMPLEMENTATION STRATEGIES TO
ADDRESS TRAUMA INJURY AND
VIOLENCE ALONG WITH DISASTER
PREPAREDNESS AND RESPONSE.
ADDITIONAL THIS WILL SUPPORT OUR
BEDDING OF PHYSICAL COGNITIVE,
SOCIAL AND EMOTIONAL DEVELOPMENT
ACROSS THE LIFE SPAN TO OPTIMIZE
TIMING OF INTERVENTIONS FOR
HEALTHY DEVELOPMENT.
FURTHER WE PLAN TO SUPPORT
RESEARCH THAT WILL ENHANCE THE
INTERNATIONAL CLASSIFICATION
IMRAIGZ OF PEDIATRIC AND ADULT
SYSTEMS OF CARE, ESPECIALLY FOR
YOUTH TRANSITIONING TO ADUMENT
HEALTHCARE.
THIS GOAL ALSO AIMS TO DEVELOP
MEASURES THAT WILL HELP
DETERMINE SUCCESSFUL TRANSITION
ACROSS MULTIPLE LEVELS AND
ULTIMATELY IMPROVE CARE FOR
ADOLESCENCES IN THE EMERGING
ADULLS AND LASTLY FOR GOAL 4, WE
AIM TO ADVANCE, TO ENHANCE THE
EVIDENT BASE FOR PEDIATRIC AND
ADOLESCENT PRIMARY CARE.
BY IDENTIFYING PRACTICES AND
FEATURES OF HEALTHCARE DLRY,
ASSOCIATED WITH POSITIVE CHILD
HEALTH OUTCOME.
NEXT SLIDE, PLEASE.
THE FOLLOWING OR OBJECTIVES FOR
GOAL 5 WHICH ADVANCES
THERAPEUTICS AND DEVICES FOR
PREGNANT AND LACTATING PEOPLE,
PREGNANT AND PEOPLE WITH
DISABILITYINGS.
THIS GOAL FOCUSES ON CONTUCTING
AND SUPPORTING FOUNDATIONAL
RESEARCH ON THE DEVELOPMENT AND
INTERVENTIONS TARGETED TO THE
NEEDS OF PREGNANT OR LACTATING
PEOPLE, CHILDREN OR PEOPLE WITH
DISABILITIES, INFORMED BY PK,
APPROXIMATE, D, PG, DOSING AND
FORMULATION STUDIES.
THIS GOAL ALSO FOCUSES ON
IDENTIFY XG VALIDATING
BIOMARKERS, MODELING APPROACHES
AND OUTCOME MEASURES THAT CAN BE
UTILIZED TO SUPPORT RIGOROUS
TESTING AND OR REGULATORY
APPROVAL OF PHARMACOTHERAPY ANDS
DEVICES IN THESE POPULATIONS.
FURTHER WE PLAN TO SUPPORT
CLINICAL RESEARCH AND
DISSEMINATION AND EVALUATE
SCALABLE, ACCESSIBLE
THERAPEUTICS, DIAGNOSTICS AND
MEDICAL DEVICES FOR PREGNANT AND
LACTATING PEOPLE AND MORE PEOPLE
WITH DISABLES AND LASTLY CAN
GOAL CALLS FOR THE USE OF
ADVANCED DATA SCIENCE
TECHNIQUES, TO ASSESS HOW
OUTCOMES, THEOR PUTTIC SAFETY, -
OR EFFECTIVENESS, HEALTHCARE
MANAGEMENT AND HELT CARE
DELIVERY AND DATA SETS THAT
INCLUDE THESE POP RULINGS.
NEXT SLIDE, PLEASE.
WE WILL NOW CONSIDER THE RFI
WHICH DESCRIBES THE OBJECTIVES
WE JUST REVIEWED.
NEXT SLIDE EMPLOY YOU SHOULD
HAVE ACCESS TO THE RFI LINK IN
YOUR PACKETS.
PLEASE FEEL FREE TO USE THE
THROINK REVIEW THE RFI FOR THIS
PORTION OF THE MEETING.
AT THIS TIME WE WOULD LIKE TO
HEAR FROM YOU.
PLEASE RAISE YOUR HAND OR USE
THE RAISE HAND FEATURE IF YOU
ARE ON ONLINE THAT, THAT I MAY
CALL ON YOU FOR YOUR FEEDBACK.
PLEASE NOTE THAT WE ARE--IF WE
ARE UNABLE TO GET THROUGH
EVERYONE'S FEEDBACK IN THE
ALLOTTED TIME, YOU WILL BE ABLE
TO SHARE ADDITIONAL FEEDBACK VIA
THE RFI.
ON THE CURRENT SLIDE WE NOTED
QUIET WE ASK YOU TO NOW
CONSIDER, WHAT FEEDBACK TO YOU
CO HAVE YOU HAVE ON THE
SCIENTIFIC RESEARCH PRIORITIES
LISTED IN THE RFI.
WE HAVE SEVERAL KEY TEAM MEMBERS
HERE TO CAPTURE YOUR FEEDBACK IN
REALTIME.
I WILL NOW TURN TO YOU.
[ APPLAUSE ]
SPHRKS FIRST OF ALL I WANT TO
SAY SORRY MY BACK IS TURNED DUE
TO MICROPHONE PLACEMENT.
BUT IT DOES SET A VISION FOR
WOMEN AND CHILDREN'S HEGHT AND I
THINK THERE IS VERY LITTLE I
HAVE TO ADD BUT THERE WAS 1 GAP
THAT I DID WANT TO POINT OUT AND
THAT WOULD BE IN THE REALM OF
CHILDREN AND YOUNG PEOPLE WITH
MENTAL HEALTH.
SO WE'RE AWARE OF THE RISING
RATES OF THESE PROBLEMS THAT CAN
AFFECT REAL WORLD OUTCOMES LIKE
SCHOOL, ATTENDANCE, CAN RESULT
IN SUICIDE IN ADOLESCENTS,
EATING DISORDERS ON THE RISE
BECAUSE I THINK THIS IS A VISION
AT THE SAME TIME FOR CHILDREN,
AND YOUNG PEOPLE IT WOULD BE
USEFUL TO INCLUDE THAT AS
ANOTHER OBJECTIVES.
I REALIZE IT MAY NOT BE A
FUNDING ENVELOPE OF NICHD BUT
JUST TO CAPTURE THAT PRIORITY
WOULD BE USEFUL.
>> THANK YOU.
NREMEMBER THAT 1 OF THE ORIGINAL
GOALS WAS WHERE SHOULD WE LEAVE,
WHERE SHOULD WE PARTNER SO
THIS--WE HAVE IN THE PAST
PARTNERING WITH NATIONAL
INSTITUTE OF MENTAL HEALTH IN
TERMS OF THE MENTAL HEALTH
ABEES, NOW THEY ARE CURRENTLY
UNDERGOING A SYRUP FOR A NEW
DIRECTOR, SO WE KNOW THAT FOR
EXAMPLE, SUICIDE WAS A BIG
PRIORITY FOR DR. JOSH GORDON.
WE DON'T KNOW WHO THE NEXT
DIRECTOR WILL BE, BUT I THINK,
YOU KNOW YOUR COMMENTS ARE WELL
NOTED AND WE CAN USE THAT AS AN
OPPORTUNITY TO COLLABORATE WITH
OTHER INNSITUTES.
THANK YOU.
>> THIS WAS REALLY A LOT TO
THINK ABOUT SO I DON'T KNOW THAT
I HAVE ALL MY QUESTIONS BUT ON
GOAL 4, I TOOK NOTE AS 1 OF THE
POINTS YOU MENTIONED TO RESPOND
AND PREPAREDNESS AND SO THAT
MADE ME THINK ABOUT THE
QUESTIONS OF CLIMATE AND THE
EFFECTS ON HEALTH IN GENERAL
WITHOUT THE IT NECESSARILY BEING
A DAOF THER SO IS THAT SOMETHING
THAT'S LINKED TO A DISASTER, A
SIGNIFICANT THROUGH THIS, THAT'S
SOMETHING THAT CAN BE CONSIDERED
IN THIS AS WELL?
>> I CAN SEE THE CORRELATION BUT
I'M NOT SURE WHETHER THAT FITS
WITHIN, SO THE NIH REVIEW.
SO THERE ACTUALLY IS AN NIH WIDE
INITIATIVE ON CLIMATE CHANGE AND
HEALTH AND I REPRESENT AND
NICHDOT EXECUTIVE COMMITTEE AND
THEN WE HAVE 2 PROGRAM OFFICS
THAT ARE WITH NIKRRK HD ON THE
STEERING COMMITTEE AND THEY
REALLY DO THE LION'S SHARE OF
THE WORK BUT OUR POPULATIONS AND
OUR SCIENCE ARE VERY WELL,
CONSIDERED AND INYOU CLUEDED IN
THAT--INCLUDED IN THAT NIESH H
WIDE INITIATIVE.
COMPREHEND.
NTHANK YOU FOR THAT
PRESENTATION.
I THOUGHT IT WAS NOT ONLY
WONDERFUL BUT BEING PART OF THE
STRATEGIC PLAN THAT YOU LED
DR. BIANCHI IN 2019.
SO THAT'S GREAT.
I ALSO LOVE THE WAY MATERNAL
MORTALITY IS CALLED OUT.
I WONDER IF IT'S CALLED OUT EVEN
MORE, LIVING IN THE MATERNAL
FETAL MEDICINE PHASE, I READ
THIS WHEN IT CAME OUT LAST WEEK
XI REMEMBER BEING SURPRISED.
I THOUGHT IT WOULD BE CALLED OUT
A LITTLE BIT BETTER, THE WAY
IT'S WRITTEN, IT ALMOST IMPLYING
THAT MORTALITY AND MORBIDITY ARE
RELATED TO LABOR AND DELIVERY
EEIVETS AND TAKEN--THEY'S MAYBE
PARTIALLY THE CASE BUT I CAN
TELL YOU THAT IN THE MORTALITY
RIEF BEEN SOCKED WITH, NONE OF
THEM WERE RELATED TO LABOR AND
DELIVERY COMPLICATION, USUALLY
CARDIOVASCULAR COMPLICATION, SO
I FEEL LIKE IT CAN BE EXPANDED A
BIT MORE.
ONE THING I WANT TO KNOW IS THAT
THE--IT'S CALLED OUT IN THE
OBJECTIVES, BUT THE--AS WE MOVE
INTO THE SORT OF THE
IMPLEMENTATION PHASE OF THE
PROCESS, GAUGE THE EXTENT THAT'S
BEING ADDRESSED, YOU CAN'T
REALLY TELL JUST FROM THE
ABJECTIVE LEVELS, SO MAYBE
PLENTY OF IPT
GREATERRISHIAATIVES THAT WILL BE
TARGETED TOWARDS THAT.
>> YEAH, DR. BARKIN?
>> THANK YOU.
JUST WANT TO YOU KNOW I'M 1 OF
THE FEW PEOPLE ON ZOOM, YOU ALL
LOOK GOOD ON NIESH H TELEVISION,
YOU'RE LOOKING GOOD.
I DID I HAVE COUPLE OF
OVERARCHING QUESTIONS FOR US TO
CONSIDER 1 IS WHEN WE LOOK AT
THE CROSS CUTTING THEMES, I
WONDER IF WE NEED TO INCLUDE
SOMETHING LIKE JUDICIOUS USE OF
AI, WHEN WE LOOK AT WHERE WE ARE
RIGHT NOW TODAY, AND THEN WE TRY
TO UNDERSTAND WHERE WILL WE BE
IN 5 YEARS, WE KNOW THAT THAT
TOOL KIT IS EXPLODING, AND SOIME
WONDERING IF WE SHOULD ACTUALLY
CALL IT OUT.
LET ME PAUSE THERE AND HEAR YOUR
THOUGHTS ABOUT THAT.
>> SO IT'S INTERESTING YOU
MENTION THAT.
WE HAD A CALL WITH OUR DIRECTOR
FOR THE OFFICE OF DATA SCIENCE
AND ACTUALLY WE TALKED ABOUT
THAT.
AND I THINK YOU'RE RIGHT.
I THINK SHE INTENDS TO INCLUDE
THAT AS PART OF THESE CROSS
STUDYING, PART OF THE TUE
ARDSHIP SECTION OF THE STRATEGIC
PLAN SO THERE'S STEWARDSHIP
ASPECT OF THE 1 OF THE 3 DOMAINS
I MENTIONED, WHERE THE OFFICER
DID OF DATA SCIENCE WILL HAVE
ASPECTS OF AI, RESPONSIBLE AI AS
IT APPLIES TO OUR WORK AND THE
INSTITUTE.
GREAT.
THANK YOU.
MY SECOND COMMENT, WHEN WE TALK
ABOUT IT AND YOU SPECIFICALLY
CALL OUT IN GOAL 1 UNDERSTANDING
MOLECULAR, CELLULAR AND
STRUCTURAL BASIS OF DEVELOPMENT
AND YOU CALL OUT SINGLE CELL
PROAM I DON'T MEANICS METRICS
TAB O LOAMICS, I WOULD ENCOURAGE
US TO ADD EXPOETIC NATIONAL
LIBRARY OF MEDICINICS BECAUSE WE
KNOW IT'S SO HARD TO WRAP OHANDS
AROUND SO MANY EMERGING DEC
SYSTEM THAT IT'S A COMPLEXITY
SCIENCE INTERACTIVE COMPONENT
THAT THEN IS DRIVING A LOT OF
THE THINGS WE'RE SEEING.
SO THAT'S A RECOMMENDATION AND I
ALSO JUST WANTED TO BUILD ON THE
PRIOR COMMENT, IN GOLD 2,
LOOKING AT PROMOTING GYNECOLOGIC
AND ANDROGENROLOGGIC AND
REPRODUCTIVE HEALTH.
I KNOW YOU ALL CALL OUT
GENERALIZED AND PUBLIC PAIN.
IN MY YEARS ON COUNCIL WE REALLY
HAVE BEEN PRETTY SPECIFIC ABOUT
ENDOMETRIOSIS AND WE'RE BECAUSE
IT'S BEEN SO UNDERSTUDIED AND
WE'RE 1 OF THE FEW PLACES THAT
STUDIES IT, IT MIGHT BE UNDER
THE UMBRELLA OF PELV INCREASE IN
BODY PAIN BUT SHOULD WE
ARTICULATE THAT MORE CLEARLY.
>> YEAH, SURE, THANK YOU IF ARE
THAT AND I ALSO THINK THE
ENDOMETRIOSIS WAS PART OF THE
ASPIRATIONAL GOALS.
WE HAVEN'T GOTTEN TO THE FACE OF
THE TWEPPING THE ASPIRATIONAL
GOALS AS OF YET SO THAT'S SORT
OF OPEN.
I'M SURE WE'RE OPEN TO THAT.
THANK YOU.
>> I CAN TELL YOU HAVE BEEN
LISTENING.
>> THANK YOU VERY MUCH.
I JUST WANT TO SPEAK TO GOAL
NUMBER HOUR XI WANT TO CALL OUT
AND CONGRATULATE NICHD BECAUSE
THIS IS A VERY IMPORTANT MOVE IN
THE RIGHT DIRECTION, THE ONLY
THINK THIS I WOULD SAY THAT WE
MAY NEED TO CONSIDER AROUND IT
IS BROADER SOCIALIZATION OF THE
ROLE OF MODELING QUANTITATIVE
METHODOLOGIES, THE ROLE OF
LEVERAGING DATA TO HAVE SMARTER,
SMALLER PRAGMATIC TRIALS OF
GENERATION OF PK DATA, PD DAT
DATA SO THAT WE CAN MOVE MORE
EFFICIENTLY WITH THERAPEUTICS WE
HAVE BUT DON'T NECESSARILY
UNDERSTAND FULLY HOW THEY SHOULD
BE APPLIED IN THE DIFFERENT
PHASES OF PREGNANCY.
SO MAYBE THERE NEEDS TO BE SOME
MORE COMPONENT OF INDIVIDUALS
UNDERSTAND IN THE CLINICAL
SPECTRUM THAT THERE IS A ROLE TO
PLAY FOR THESE SMART TARGETED
STUDIES INSTEAD OF ALWAYS
THINKING THERE NEEDS TO BE
DEFINITIVE CLINICAL TRIALS TO
HELP US RESOLVE AND GET ANSWERS.
I WANTED TO SAY THANK YOU VERY
MUCH FOR MOVE NOTHING THAT
DIRECTION BUT PERHAPS THERE'S A
COMPONENT OVERLAY WE NEED TO
CONSIDER AS WELL.
>> THANK YOU CRISTAINA, I THINK
YOU MEANT THEME 5 NOT 4.
>> YES, THANK YOU NCAN WE GET TO
DR. AZER, BECAUSE SHE'S BEEN
PATIENTLY WAITING AND THEN
DR. NEAL PERRY AFTER THAT.
NTHANK YOU SO MUCH FOR THE
PRESENTATION, IT WILL REALLY
FANTASTIC.
CLEELLY A TREMENDOUS AMOUNT OF
WORK WENT INTO ALL OF THIS.
THERE ARE SO MANY THINGS THAT
ARE COVER THAT AT SOME POINT
WIEW WILL HAVE TO PRIORITIZE,
YOU CAN'T FUND ALL OF THAT, WE
WISH YOU COULD, SO THAT WILL BE
NEED TO BE PART OF THIS EFFORT,
I THINK.
MORE SPECIFIC POINTS, I THINK
THAT YOU DID A REALLY NICE JOB
LINKING SORT OF TALKING ABOUT
THE ECONOMIC AND SOCIAL
TETERMINANTS OF HEALTH.
I THINK IT'S ALSO VERY IMPORTANT
FOR THE NIH TO ALSO PROMOTE
RESEARCH LINKING MATERNAL AND
CHILD HEALTH WITH FUTURE
IMPORTANT ECONOMIC AND SOCIAL
OUTCOMES.
RIGHT IN HEALTH IS REALLY AN
INCREDIBLY IMPORTANT PREDICTER
OF ECONOMIC GROWTH AND SOMETHING
THAT ALL POLICY MAKERS CARE
ABOUT SO I THINK THAT SHOULD BE
PART OF WHAT THE NIH DOES WHICH
IS PROMOTE RESEARCH, MAKING MORE
CLEAR AND EXPLICIT THAT LINK
BECAUSE IT HELPS TO SORT OF
PROVIDE ADDITIONAL EVIDENCE FOR
WHY IT IS SO IMPORTANT FOR THE
NATION TO INVEST IN THE HELT OF
MOTHERS AND CHILDREN.
SO THAT'S JUST SORT OF A BIG
GENERAL POINT ABOUT THIS.
SORT OF RELATED TO THAT, THERE
WAS A MENTION OF DATA SCIENCE
TECHNIQUES, I WASN'T SURE WHAT
THAT MEANT.
THERE WAS REFERENCE NOW TO AI
BUT I GUESS MY QUESTION IS
WHETHER THAT ALSO INCLUDES
QUEPING NEW LARGE DATA SETS
WHICH ARE THE KINDS OF DATA SETS
AND DEVELOPED AROUND MACHINE
LEARNING AND OTHER THINGS ARE
MOST EFFECTIVE WITH THESE REALLY
LARGE DATA CELTS, I CAN'T KNOW
IF THAT WAS PART OF WHAT YOU
MEANT WHEN YOU WERE TALK DAILY
BASIS THEA SCIENCE TECHNIQUES
AND ANOTHER JUST KIND OF SMALLER
POINT, I WANT TO EMPHASIZE SOME
SORT OF LOW TECH INTERVENTIONS.
THERE'S A LOT OF LOW HANGING
FRUIT OUT THERE.
SO THERE A LOT OF EFFECTIVE
THERAPEUTICS FOR MOMS AND
CHILDREN THAT THEY'RE NOT
GETTING.
SO I THINK IN TERMS OF
INTERESTING FEEDBACK PROMOTING
MATERNAL AND CHILD HEALTH, YES
IT'S ABOUT DEVELOPING NEW TOOLS
AND WAYS OF TREATING THEM BUT
SOMETIMES WE HAVE EFFECTIVE
TREATMENT IT IS AND THERE'S JUST
LOTS OF FAMILIES, TENDING TO
MORE DISADVANTAGED FAMILY THAT
ARE RECEIVING THEM.
SO WORK IN THAT SPACE CAN ALSO
BE VERY EFFECTIVE AND IMPROVING
OVERALL CHILD HEALTH AND WELL
BEING.
I WILL LEAVE IT AT THAT.
I THOUGHT IT WAS GREAT.
MGREAT.
THANK YOU.
>> DR. PERRY.
>> THANK YOU FOR THAT
PRESENTATION, IT WAS VERY
COMPREHENSIVE AND REALLY QUITE
THOUGHTFUL.
I HAD A COUPLE COMMENTS, 1 THAT
WAS SIMILAR TO ANETWORK NA, BUT
IN THE CONTEXT OF FUTURE
FERTILITY HOW FUTURE SOCIAL
DETERMINANTS OF HEALTH MAY
AFFECT FUTURE FERTILITY AS
SOMETHING TO CONSIDER.
I WASN'T SURE WHERE YOUR GUIN
COALING FELL WITHIN THIS,
STRATEGY, IN PARTICULAR PELVIC
HELT AND YOU KNOW THAT'S AN
IMPORTANT PART OF WOMEN'S HEALTH
FWE THINK ABOUT THE QUALITY OF
CARE AND QUALITY OF LIFE AND
MODEL CITIZEN BI BILITY AND IT
WASN'T CLEAR TO ME WHERE, I
WOULD LIKE TO RECOMMEND WE ARE A
BIT BROADER WITH THE PAIN AND
PELVIC PAIN BECAUSE 1 THING THAT
IS ALSO REALLY UNDERSTUDIED IS
THAT IS SIGNIFICANT SOURCE FOR
THIS FUNCTION, LOSS OF WAGE AND
ALL THAT AND THAT'S NOT
NECESSARILY RELATED TO--IT'S NOT
RELATED TO FIBROIDS AND IT'S NOT
PARTICULARLY RELATED TO
ENDOMETRIOSIS, I WOULD WORRY
ABOUT BEING TOO PRESCRIPTIVE AND
FOCUSED ON ENDOMETRIOSIS SO THAT
WE LEFT OUT OTHER AREAS THAT ARE
ALSO UNDER STUDIES AND JUST, YOU
KNOW, JAM PACKED IN TERMS OF THE
MEDICAL IMPACT.
NRIGHT.
THOSE ARE GREAT FEEDBACK TO TAKE
BACK TO THE TEAM.
AS I MENTIONED WE'RE JUST
GETTING START WIDE THE
DEVELOPMENT OF THE
IMPLEMENTATION PLAN WHERE WE'RE
GOING TO SORT OF MORE
SPECIFICITY IN EXACTLY WHAT THE
INSTITUTINGS WILL DO TO ACHIEVE
THESE OBJECTIVES.
SO THANK YOU NTHIS IS CANDAS,
CAN I CHIME IN REAL QUICK BEFORE
I HAVE TO LEAVE, I WANT TO
RESPOND THIS IS ACTUALLY THE
FIRST TIME IN THIS REFRESH THAT
WE'VE BEEN ABLE TO--START MY
VIDEO THAT WE'VE BEEN ABLE TO
INCLUDE OUR PRIORITY OF PELVIC
FLOOR HEALTH SERIES POINTS
PELVIC FLOOR DISORDERS AND
NETWORK JUST BECAME START OF OUR
STRATEGIC PLAN FOR THIS REFRESH
O HIGHLIGHTING OUR EXISTING
PRIORITY THERE IS SOMETHING WE
WANT TO MAKE SURE THE COMMUNITY
KNOWS ABOUT, SO YOU'RE EXACTLY
RIGHT.
- IT ISA I PRIORITY FOR US AND
NOW IT IS LISTED IN THE
STRATEGIC PLAN, SO 1 OF OUR
OBLIGATIONS YECTIVES IN OUR
REFERENCE DOES REFERENCE THAT
PELVIC FLOOR DISORDERS AND
PELVIC FLOOR HEALTH IN GENERAL.
>> THANK YOU.
NTHANK YOU.
>> CAN I ASK'S QUESTION.
>> YES.
>> AS SOMEBODY MENTIONED,
THERE'S A LOT OF DIFFERENT
OPTIONINGS ON THE PLAN.
OUR GOALS ON THE PLAN WITH A LOT
OF SUBCOMPONENTS UNDER EACH
GOAL.
ARE YOU ENVISIONS YOU WILL HAVE
OUTCOME METRICS ON ETCH - OF THE
SUBDIVISIONS OF EACH OF THE
GOALS OR A SMALLER NUMBER OF
OUTCOME METRICS TO SEE HOW WELL
YOU'RE DOING ON THE PLAN.
>> WE'RE ESTABLISHED METRICS FOR
ALL THE ACTIVITIES AND AT THE
ACTIVITY LEVEL, THAT WAS DONE AS
THE PERFORMANCE ANALYSIS AND
SHARED WITH THE WORKING MEMBER
FROM THE FIRST 3 YEARS OF THE
PLAN NFOR THE NEW PLAN?
>> YEAH, WE WILL BE DOING THAT,
THAT'S PART OF THE
IMPLEMENTATION PLAN PROCESS.
YES.
>> OKAY, THANK YOU FOR YOUR
PRESENTATION.
IN TERMS OF PROMOTE BEING BRAIN
HEALTH AND BACKBONE LEARNING,
THAT EFFORT FROM NIH, IN TERMS
OF FOR EXAMPLE, THE
[INDISCERNIBLE] NOW, BUT THE
HAS
BEEN IN THE [INDISCERNIBLE] AND
IT'S BEEN A UNIQUE WAY TO BRING
THAT TO THE PEDIATRIC SITE TO
THE CHILDREN, NOT ONLY FOR THAT
BUT FOR SPECIFIC DEVELOPMENT,
MAYBE THROUGH A DIFFERENT LENS,
RIGHT IN BUT MAYBE WE CAN BE
MORE SPECIFIC ON THE OPPORTUNITY
OF THE ARCH AND THE OTHER IS
TERMS OF THE NEW TERM I HEARD IS
RESPONSIBLE AI, SO THAT WILL BE
CERTAINLY PART OF WHAT WEIGH
THINK ABOUT GOING BACK.
NYEAH, 1 AREA THAT MAYBE I
MISSED THAT I THOUGHT SHOULD BE
MENTIONED WAS GENE THERAPY.
I THINK THERAPEUTIC IS THE VERY
IMPORTANT AREA THAT WE NEED TO
INCLUDE.
CAN YOU HEAR ME.
>> SHE SAID GENE THERAPY.
>> OKAY, I COULD NOT HEAR YOU.
>> YEAH, YEAH.
>> I MEAN, I DON'T SEE HERE.
>> OKAY.
>> I THINK THAT'S A BIG AREA OF
GROWTH THAT WILL HAPPEN IN THE
COMING YEARS.
>> OKAY.
>> IT COULD BE BROADENED THOUGH
TO THERAPY.
>> YEAH, AND I THINK THAT NIH
AND INTRAMURAL COULD PLAY A BIG
ROLE AS WE'VE SEEN EARLIER THIS
MORNING.
BECAUSE WE HAVE THE RESOURCES TO
DEAL WITH ULTRA RARE DISEASES.
ANOTHER THING IS IF THE
ORGANIZATION OF THE NIH--IF
THERE'S GOING TO BE
REORGANIZATION OF THE NIH
INSTITUTES WHETHER OR NOT THERE
SHOULD BE SOMETHING SAID ABOUT
DISPARITY IN THESE CALLS AS
WELL.
WAS THERE AN OVERARCHING?
OKAY, OKAY?
AND ALSO I THINK THERE WAS SOME
MENTION ABOUT IDENTIFYING
FEATURES FOR HEALTHCARE DELIVERY
SOCKED WITH OUTCOMES AND I MEAN,
I THINK THERE'S ALSO PUSH FOR
OPPORTUNITY OUTREACH.
I'M SORRY CAN YOU HEAR ME NOW?
OKAY, I WASN'T CLOSE ENOUGH IN
TERMS OF TRYING TO DEVELOP
COMMUNITY OUTREACH.
FTHERE ARE NO MORE COMMENT, I
JUST WANT TO THANK YOU FOR YOUR
ATTENTION AND FEEDBACKOT DRAFT
PRIORITIES, WE WILL TAKE THOSE
FEEDBACK AND SHARE THEM AND PLAN
TO UPDATE THE PLAN GOING FORWARD
EMPLOY AS A REMINDER, IF YOU ARE
UNABLE TO SHARE FEEDBACK TODAY
OR HAVE ADDITIONAL FEEDBACK, YOU
WOULD AND YOU WOULD LIKE TO
SHARE PLEASE FEEL FREE TO
RESPOND TO THE RFI WHICH WILL
REMAIN OPEN ON SEPTEMBER 27th.
CAN I HAVE THE NEXT SLEED.
BEFORE WE CONCLUDE OUR
PRESENTATION, WE HAVE MANY
PEOPLE WE WOULD LIKE TO THANK
FOR THEIR EFFORTS IN THE
TRANSLATIONAL RESEARCH STIGIC
PLANLE REFLESH.
FIRST THANK FUR THE LYNCHING
SESSION FOR PARTICIPANTS WHO
TOOK AN HOUR AND A HALF OF THEIR
DAY TO PROVIDE US WITH HELPFUL
FEEDBACKOT PRIORITIES.
THEIR FEEDBACK WAS CAREFULLY
CONSIDERED BY SCIENTIFIC
RESEARCH WORKING GROUPS.
AND THANK THEM FOR GUIDING US
OVER THE LAST SEVERAL MONTHS
AND, NEXT SLIDE, AND THANK FOR
ALLOWING US TO SHARE OUR UPDATES
APPROXIMATE TODAY AND PROVIDING
FEEDBACK ON THIS PROCESS.
I WILL NOW PASS THE FLOOR TO
DR. BIANCHI, AND WHO WILL
FACILITATE OUR NEXT AGENDA ITEM.
>> THANK YOU FOR AN EXCELLENT
PRESENTATION AND ALL THOSE WHO
KRIEWBED THEIR TIME AND NICHD
MEMBERS, YOU SAW SO MANY OF THEM
AND THOSE LISTS INCLUDED BOTH
INTRAMURAL AND EXTRAMURAL AS
WELL AS ADMINISTRATIVE STAFF.
SO THERE'S BEEN A LOT OF INPUT
AND OF COURSE AS NOW THAT YOU
HAD A CHANCE TO WITH THE DRAFT
AND OBJECTIVE AND GOALS, YOU
HAVE A CHANCE TO THINK ABOUT IT,
PLEASE FEEL FREE TO WRITE MORE
AND ENCOURAGE YOUR COLLEAGUES TO
WEIGH IN AS WELL.
SO, NOW WE HAVE A BITTER SUITE
PART OF OUR COUNCIL MEMBER.
WE WILL HEAR FROM OUR RETIRING
MEMBERS AND LET ME JUST SAY THAT
WE ARE ENORMOUSLY GRATEFUL TO
ALL OF YOUR SERVICE YOU KNOW
WHAT YOU GIVE US IS PRICELESS,
YOU REALLY GIVE US YOUR
EXPERTISE, YOU DONATE YOUR TIME.
IT'S NOT EASY TO TRAVEL AND TAKE
TIME AWAY FROM YOUR DAY JOB AND
WE LISTENED TO YOU AND WE TRULY
APPRECIATE ALL OF YOUR COMMENTS.
SO WE'RE GOING TO START
VIRTUALLY SHARI, YOU WILL
RECEIVE IN THE MAIL A LOVELY
SUITABLE FOR FRAMING DOCUMENT
THAT FORTUNATELY I COULD NOT
FIND DR. TABAK, WHO SIGN THIS
IS, THIS IS AT SUCH A HIGH
LEVEL, IT GOES TO THE PRINCIPAL
DEPUTY DIRECTOR OF NIH BUT IF I
COULD SIGN IT, I CERTAINLY WOULD
TO THANK YOU.
SO YOU HAVE SLIGHTLY LESS THAN 5
MINUTES TO TELL US YOUR EXIT
COMMENTS.
>> WELL, I'M DPLAD, 5 MINUTES
FEELS LIKE A LUXURY, I FEEL TOO
YOUNG TO RETIRE BUT I WOULD LIKE
TO SAY THAT THOSE MOMENTS IN
YOUR LIFE WHERE YOU'RE IN THE
RIGHT PLACE AT THE RIGHT TIME
WITH THE RIGHT PEOPLE AND YOU
DON'T KNOW WHEN THOSE MOMENTS
HAPPEN.
THERE'S SORT OF AN X-FACTOR
SOMETHING THAT'S TRULY INAFFABLE
WHEN THE RIGHT TEAM COMES
TOGETHER AND I HAVE FELT THAT
WAY ON COUNCIL.
WE WERE EMERGING TOGETHER FROM
COVID, AND WE GOT TO SEE THAT
TRAJECTORY, THAT MOVEMENT FROM
FROM HOW TO HANDLE THINGS AND
MAKE GOOD DECISIONS IN DIFFERENT
CONTEXT TOGETHER.
I AM SO GRATEFUL FOR MY COHORT,
THERE ARE A LOT OF US THAT ARE
RETIRING TOGETHER AND I HOPE
QUEE HAVE REUNIONS BECAUSE THIS
IS A SPECIAL GROUP OF PEOPLE
I'VE BEEN HONORED TO SERVE WITH.
IT TOOK ME THE FIRST YEAR TO
UNDERSTAND WHAT SECOND REVIEW IS
BECAUSE I'M SO TRAINED TO THINK
ABOUT FIRST REVIEW AND ONCE THAT
CLICKS AND YOU REALIZE, HOW
INKRE TINSIBLELY SYSTEMATIC AND
THOUGHTFUL AND THOROUGH THIS
PROCESS IS, IT'S REALLY AN
INSPIRING THING TO BE PART OF C
BI AOOH NETWORK CHI, IS
INSPIRATIONAL TO US, I KNOW
YOU'RA A HUMBLE PERSON BUT IT
MAY BE HARD FOR YOU TO HEAR TOO
MANY ACCOLADES BUT YOUR STYLE OF
LEADERSHIP IS SO ENGAGING, IT'S
SO THOUGHTFUL, YOU'RE HOPE TO
IDEAS AND IN A WAY THAT A LOT OF
LEADERS AREN'T, AND IT'S REALLY
MADE NICHD BETTER FOR IT.
SO I APPRECIATE THAT IN ADDITION
TO THE VOICE OF THE PATIENT, YOU
GET THE VOICE OF THE COUNCIL
PERSON.
AND THE KEY THING IS 1 SCIENCE,
LEARNING THE LATEST AND GREATEST
SCIENCE, I TAKE NOTES, I WAS
JUST REVIEWING MOO I NOS BAH I
LEARN THINGS I WOULDN'T KNOW
OTHERWISE, I'M AN OBESITY
RESEARCHER LOOKS THROUGH
SCIENCE, I GET TO HEAR ABOUT
MUSK LO SKELETAL ISSUES AND THE
LATEST GENETICS BEHIND IT, SO
EXPABDING MY MIND PERSONALLY AS
WELL AS SECOND WHICH IS
UNDERSTANDING HOW WE CAN LEND
OUR VOICE TO HOPEFULLY
CONTRIBUTE TEA LARGER IMPACT
BECAUSE WHAT NICHD DOES IS
REALLY REMARKABLE AND TO BE ABLE
TO BE A PART OF IT, IS A TRUE
HONOR.
SO, AND LASTLY I WOULD LIKE TO
SAY THAT NADDITION TO SCIENCE
AND LEARNING, WE BUILT THIS
COMMUNITY TOGETHER, THAT REALLY
MATTERS.
IT CHANGES HOW I THINK AS A
SCIENTIST AS WELL AS HOW I THINK
AS A LEADER AND A CHAIR.
SO THROUGH NICHD THIS, IS THE
LAST PART OF MY COMMENT.
YOU SHOULDN'T HAVE TOLD ME I HAD
5 MINUTES, DIANA, IS THAT I HAD
A CHANCE TO MEET MULTIPLE
COUNCIL MEMBERS MANY OF WHOM
HAVE ALREADY GRADUATED AND 1 OF
THEM WAS DR. LUCKY JANE AND HE
HAS TOUT ME SOY MUCH ABOUT
LEADERSHIP THAT AS OF TODAY I
HAVE JUST ANNOUNCED THAT I'M
GOING TO SUCCEED HIM AS THE
PEDIATRICIAN AND CHIEF AND THE
CHAIR AT CHILDREN'S HOSPITAL OF
ATLANTA.
AND I DON'T THINK THAT WOULD
HAVE HAPPENED IF I HADN'T KNOWN
HIM THROUGH THE LENS OF SCIENCE,
COMRADELY AND COMMUNITY.
THANK YOU MANY TIMES OVER.
KD--SALLY ARK PLAWZ NTHANK IF
YOU FOR YOUR COMMENTS AND
CONGRATULATIONS ON YOUR NEW
POSITION.
SO NEXT IS DR. CHRISTINA
BUCCI-RECHTWEG, WE WERE SO BLOWN
AWAY BY HER EXPERTISE AND UNIQUE
PERSPECTIVE THAT WE WANTED TO
HAVE HER AS A COUNCIL MEMBER.
SO CHRISTINA I WILL GIVE YOU A
SUITABLE FOR FRAMING ALTHOUGH,
CAN YOU USE IT AS SOMETHING TO
WRITE ON, CERTIFICATE.
SO ONCE YOU'RE DONE, I WILL HAND
YOU YOUR SURTEFICATE.
I.
>> THANK YOU.
I LOVED RECEIVING THE CALL TO
SAY IS THIS SOMETHING YOU WOULD
BE INTERESTED IN AND SOMEBODY IN
THIS COMMITTEE WOULD BE A
PRIVATE SECTOR, EMPLOYEE FOR TOP
10 RESEARCH AND DEVELOPMENT, AND
WORK LIMITATION GLOBALLY, IT'S
BEEN REALLY AN IMPORTANT
EXPERIENCE TO HAVE, FRANKLY
BECAUSE WE CANNOT DO WHAT WE DO
WITHOUT THE INCREDIBLE PEOPLE IN
THE ROOM AND THE ABSOLUTELY
INCREDIBLE CLINICAL RESEARCHERS
OUT THERE.
SO WE ENTIRELY RELY ON
COLLABORATION TO BE SUCCESSFUL
IN THE WORK THAT WE DO.
AND SINCE MY AREA OF THERAPEUTIC
DEVELOPMENT, IT'S JUST BEEN MY
LUCK, AND THE PLAN TO BE BUDDIED
UP WITH DR. [INDISCERNIBLE] IN
THE BACK ROW, IT'S BEEN SUCH AN
INSPIRATION, WHAT DO YOU WITH
HOW LITTLE FUNDING HAVE YOU AND
HOW DRIVEN YOU AND YOUR PEOPLE
ARE IS SO INSPIRING, AND THE
THING I WANT TO DO IS BECAUSE
JERRY SAID THIS FROM EARLIER
TODAY, NIH IS AN AMAZINGLY
RESEARCH RESOURCE, SO, I WANT
EVERYONE IN THIS ROOM TO
UNDERSTAND THAT WHEN YOU TRAINED
SO DEFINITELY THE INDIVIDUALS
WHO 10 COME TO WORK WITH US
EITHER IN OUR NONCLINICAL
RESEARCH LABS OR IN OUR CLINICAL
AND OUR CLINICAL PORTION OF OUR
ORGANIZATIONS, WE CAN SEE THE
CARE AND THE ATTENTION THAT YOU
PUT INTO THEIR TRAINING, AND
LIKE I SAID, WE CAN'T DO
ANYTHING THAT WE DO WITHOUT YOUR
COLLABORATIONS, I THINK IF
THERE'S A 1 THING I WANT YOU TO
WALK AWAY WITH IS THAT THERE ARE
SORTS OF US THIS IS HOW WE
IMPROVE THE HEALTH OF THE NGZ,
THIS IS HOW WE IMPROVE THE
HEALTH OF THE GLOBE AND I JUST
WANT TO AGAIN GO BACK TO THAT
COMMENT FROM JERRY BECAUSE I
WORK FOR A GLOBAL DRUG
DEVELOPMENT COMPANY.
IT'S NOT JUST PEOPLE WHO LOOK AT
THE WORK AND THE RESEARCH AND
RESOURCE, WE HEAR FROM PEOPLE
ALL THE TIME ALL OVER THE GLOBE
HOW ENVIOUS THEY ARE OF THE
STRUCTURE WE HAVE HERE IN THE
UNITED STATES, SO, I SIT ON THE
POLICY SIDE OF MY ORGANIZATION,
I NEED YOU ALL TO KNOW YOU HAVE
A RESOURCE AND ME AND THE
ORGANIZATION I WORK WITH TO
INSURE THAT WE CONTINUE TO GET
YOU FUNDED, CONTINUE TO DO THE
THINGS YOU DO SO EXPERTISE AND
SO ADEPTLY.
IT'S ABSOLUTELY APPALLING TO ME
THAT THE NIH BBCA PROGRAM HAS
BEEN FLATLY FUNDED FOR 20 YEARS.
THIS CANNOT CONTINUE TO HAPPEN
THIS WAY EMPLOY WE NEED TO
INVEST IN CHILDREN, WE NEED TO
INVEST IN PREGNANT WOMEN, WOE
NEED TO INVEST IN LACTATING
WOMEN, THIS IS OUR FUTURE AND I
THINK THERE'S 1 THING I CAN TAKE
AWAY FROM HERE, THAT I SEE WITH
VERY WIDE EYES JUST HOW
INCREDIBLE THIS NETWORK IS, AND
CONGRATULATIONS TO YOU.
BECAUSE IT'S WITH YOUR
LEADERSHIP.
NTHANK YOU.
WE ARE SO PLESESSED TO HAVE AN
AMAZING TEAM BOTH INTRAMURAL,
EXTRAMURAL AND ADMIN STRAIOF
THIVE FOLKS.
[ APPLAUSE ]
>> NEXT PERSON IS KATHRYN LANG,
NTHANK YOU, I WILL BE BRIEF.
I AM THANK WILL FOR THE
OPPORTUNITY TO SERVE, I OFTEN
GET REFERRED TO BY THERESA CRUZ
AND HER TEAM, AND I AM
APPRECIATIVE OF THAT BUT THIS 1
IS THE BEST 1 SO FAR, THIS HAS
BEEN A REALLY VALUABLE
EXPERIENCE FOR SOMEONE WHO COMES
FROM THE REHABILITATION SPACE
AND WORKS WITH ADULTS WE HAVE
RESEARCH, AND IT FITS INTO NICHD
AND DEVELOP A NEW APPRECIATION
FOR SHARED VALUES AND SHARED
APPROACHES BETWEEN THESE
DIFFERENT AREAS OF SCIENCE.
THERE'S A LOT MORE SIMILARITIES
THAN DIFFERENCES, SO, WE--I FELT
VERY VALUED BY THE NICHD
LEADERSHIP AND I FEEL LIKE THIS
IS A LEADERSHIP THAT GENERALLY
VALUES OR LEADERSHIP, WE'RE NOT
HERE FOR SHOW, THAT'S BEEN
WONDERFUL AND I LEAVE THE
SERVICE I HAVE WITH YOU WITH
MAKING NEW FRIENDS, SO I ECHO
SHARI'S COMMENTS, SAD YOU'RE NOT
HERE, BUT SHARING A BETTER
PERSPECTIVE ON LIFE AND SCIENCE.
THANK YOU.
KD--SALLY ARK PLAWZ DR. NEAL-
PERRY.
NIT'S HARD FOLLOWING UP AFTER
THESE WONDERFUL COMMENTS OF
PEOPLE WHO SAID THINGS THAT
REALLY RESONATE WITH ME BUT I'M
GLAD I'M NOT THE LAST PERSON.
YOU KNOW IT HAS RULE BEEN AN
HONOR ON THIS PROCESS AND IT HAS
BEEN A LITTLE BIT LIKE THE
WIZARD OF OZ, YOU KNOW YOU'RE ON
THE YELLOW BRICK ROAD AND YOU'RE
TRYING TO GET THERE AND FIGURE
OUT THINGS AND ONCE YOU GET
THERE, WE HAVE, YOU KNOW THE OZ,
DIANA, AND WE LEARN ABOUT ALL
THE THINGS BEHIND THE CURTAIN
AND IT HAS TRULY BEEN A
REWARDING AND UPLIFTING
EXPERIENCE.
IT'S JUST BEEN AMAZING TO LEARN
ABOUT ALL THE RESEARCH AND TO BE
A PART OF REALLY MAKING A
DIFFERENCE AND I TRULY HAVE FELT
THAT WAY, THAT THE WORK THAT WE
DO MATTERS AND AS KATHRYN SAID,
FELT VALUED AND FELT HEARD
BECAUSE THAT'S ALSO REALLY,
REALLY IMPORTANT.
I WANT TO SAY THANK TO YOU
DIANA, REBECCA AND JOHAN, AND
MAKING THIS LOOK SIMPLE, AND
IT'S A SKILL, IT'S A TALENT.
BEING ABLE TO DO AND HAVING US
ALL FEEL LIKE WE'RE CONNECTED
AND WE'RE VALUED.
I DO HAVE 1 COMPLAINT AND IT'S
NOT YOUR FAULT, IT WAS COVID
BECAUSE I FELT LIKE COVID TOOK
ARK WAY FROM OUR EXPERIENCE OF
BEING TOGETHER AND WHILE ZOOM
WORKS IT IS NOTHING LIKE BEING
HERE IN PERSON AND HAVING THAT
OPPORTUNITY TO TALK TO EACH 1 OF
YOU ASK LEARN FROM YOU AND TO BE
ABLE TO SHARE.
SO THANK YOU FOR THE EXPERIENCE,
YOU KNOW I'M HAPPY TO HAVE BEEN
HERE AND WILL ALWAYS BE A FAN OF
THIS PROCESS, AND CAN REALLY
SPEAK OUTSIDE OF HERE LIKE
ACTUALLY IT'S QUITE FAIR, BUZZ
YOU KNOW THAT THERE ALSO THOSE
THOSE PEOPLE, NO IT'S NOT,
THERE'S REALLY A LOT OF THOUGHT
THAT GOES INTO IT SO THANK YOU
FOR THE OPPORTUNITY.
NTHANK YOU SO MUCH GENEVIEVE.
[ APPLAUSE ]
OKAY AND BEFORE WE GET TO DAVID
I WOULD LOVE TO GET A PICTURE
WITH THE RETIRING COUNCIL
MEMBERS SO THAT WE HAVE IT FOR
PERPETUITY BUT ALSO FOR 1 OF OUR
NEWS LETTERS.
>> WILL YOU PHOTO SHOP ME IN.
>> PHOTO SHOP.
DR. DAVID ROWITCH.
NTHANK YOU DIANA, SO I WOULD
LIKE TO ECHO A LOT OF COMMENTS
OF THE PREVIOUS COMMENTS, I
WOULD LIKE TO EXPRESS MY
APPRECIATION FIRST TO COLLEAGUES
ON THE PANEL BECAUSE IT'S A RARE
PLEASURE TO BE ON A PLULTY
DISCIPLINARY PANEL WHERE WE GET
TO DEBATE AND DISCUSS THE TOPICS
IN OUR FIELD AND I AGREEN CELLS
WITH YOU IMRKS ENEVIEVE, MORE
FACE TIME WOULD HAVE BEEN GREAT
BUT I VALUE THE TIME WE HAD WITH
THE COUNCIL MEMBERS AND LOOK
FORWARD TO CONTINUING THAT.
TO PROGRAM AND STAFF, ALSO SAID
BEFORE THESE MEETINGS ARE REALLY
FUN TO COME TO, THEY'RE WELL
ORGANIZED, WE HAVE INTERESTING
SCIENTIFIC PRESENTATIONS, THE
VOICE OF THE PATIENT REALLY
DRIVES HOME THE MESSAGE OF NICHD
AND I LEAVE FEELING ENERGIZED
AND ALSO WITH THE FUTURE
CONCEPTS THAT WILL BE ASKED TO
APPROVE, THEY SHOW THE
THOUGHTFUL LOOK FORWARD THE
FEATURE AND WHERE IT SHOULD ANY,
YOU BRING US RECOMMEND EGGS THAT
IT USUALLY JUST REQUIRES SIMPLE
[INDISCERNIBLE].
SO I APPRECIATE THE WORK AND
PROGRAM AND STAFF, AND I GUESS
ALL OF THIS REQUIRES A CONDUCTOR
SO TO DIANA FOR YOUR LEADERSHIP
AT NICHD AND ALSO JUST EXCITING
TO SEE HOW THE INSTITUTE AND
DEVELOPING STRATEGY GOING
FORWARD AND REALLY BEING THE
CHAMPION FOR WOMEN AND
CHILDREN'S HEALTH AND YOU WILL
ASK SUCH AN IMPORTANT TOPIC AND
SHOW THE DETERMINE NATION AND
COMMITMENT TO THAT GOAL, WHICH
WILL BE ABLE TO SHARE IN THIS
ROOM.
ALSO, I GUESS I'M IMPRESSED WITH
YOUR SKILL SET.
KNOW THE SCIENCE, CELL FREE DNA
AND THEN ALSO A DOCTOR OF GREAT
BEDSIDE MANNER AS WE SAW WITH
NATALIE TODAY AND OF COURSE I'M
CHIEF TEAPPEDDING AT BRIGHAM
WOMEN'S HOSPITAL IN THE
NONATOLOGY AND I WAS FORTUNATE
TO HAVE HER AS MY CAREER MENTOR
AND SO IT'S BEEN GREAT TO
RECONNECT AND IT'S 1 OF THE
REASONS WHY I WILL MISS COMING
TO THE MEETINGS, I ALSO WANT TO
SAY IT'S BEEN A PRIVILEGE AND
I'M GRATEFUL FOR THE OPPORTUNITY
TO PARTICIPATE NTHANK YOU VERY
MUCH, DAVID.
[ APPLAUSE ]
>> I KNOW THAT PEOPLE SINGLED ME
OUT BUT THIS IS A TEAM GAME AND
I'M SO FORTUNATE TO BE SUPPORTED
BY AN INCREDIBLE LEADERSHIP
TEAM, SOME OF WHOM ARE HERE
TODAY IN THIS ROW, THE
EXTRAMURAL BRANCH CHIEFS THE
INTRAMURAL PROGRAM, THE
ADMINISTRATIVE MANAGEMENT
BRANCH, THE GRANTS MANAGEMENT
BRANCH, SCIENTIFIC REVIEW, I
MEAN IT IS AN ENORMOUS
ORGANIZATION AND YOU KNOW IF DO
MAKE IT LOOK EASY BUT THERE IS A
LOT OF WORK BEHIND THE SCENES IN
PARTICULAR FOR THE SEPTEMBER
COUNCIL BECAUSE THERE'S A SHORT
INTERVAL BETWEEN JUNE EXPW
SEPTEMBER, AND WE ALSO HAVE THE
RUSH TO THE END OF THE FISCAL
YEAR, SO WE'RE TRYING TO SPEND
ALL OF OUR APPROPRIATED MONEY,
AND GET IT OUT TO ALL OF YOU AND
THAT IS ALSO AN ENORMOUS JOB, SO
I WOULD LIKE TO HAVE A ROUND OF
ARK PLAWZ FOR JUST THE--APPLAUSE
FOR JUST THE INCREDIBLE NICHD
TEAM.
[ APPLAUSE ]
>> DIANA, I MEANT TO SAY THIS
WHEN I WAS GIVING MY COMMENTS
CAN I ADD TO THAT, TOO, JUST 1
SMALL THING IF YOU DON'T KNOW, I
KNOW IT'S A STRANGE CALL OUT BUT
TO THE ETHIC AND COMPLIANCE
FOLKS HERE, FOR THE LAST 4
YEARS, I HAVE GIVEN YOU SUCH
HEADACHES AND HEART ATTACKS AND
AND YOU ARE JUST ABSOLUTELY
INCREDIBLE AND PATIENT AND WHEN
YOU'RE DEALING WITH SOMEONE WHO
IS IN THE PRIVATE SECTOR IS HAS
A LOT OF THINGS CHANGING
CONSTANTLY, AND I KNOW THAT HAS
BEEN A HEADACHE AND YOU DESERVE
SO MANY KUDOS AND TO THE PEOPLE
WHO ORGANIZE THE MEETINGS LIKE
SHOULD SHE GOING TO GET CLEARED
ANYTIME, EVER.
THANK YOU VERY MUCH.
HOAF HOPEFULLY YOUR HEADACHES
ARE NOT GOWN.
>> YES, AN IMPORTANT POINT.
THERE ARE A NUMBER OF OFFICES
THAT WE'VE MENTIONED TODAY.
THE OFFICE OF HEALTH EQUITY FOR
EXAMPLE, OFFICE OF DATA SCIENCE,
SHARING, IT'S GOING TO BE HARD
TO GO THROUGH THE WHOLE LIST BUT
THE OFFICE OF LEGISLATION,
PUBLIC POLICY AND ETHICS,
COMMITTEE MANAGEMENT, IT'S AN,
NORMOUS ORGANIZATION, BUT
GENEVIEVE, TELL REFLECT BACK TO
SOMETHING THAT CHRIS SAID
EARLIER AND HE TALKED ABOUT
ENTHUSIASM AND I FELT THE
EPITIRE TIME THAT THAT'S A
REQUIREMENT FOR HIRE.
BECAUSE THAT'S WHAT YOU GET FROM
EVERYONE YOU INTERACT WITH, AND
IT'S HARD TO PROJECT THROUGH AN
E-MAIL BUT IT'S ACTUALLY
ACHIEVED.
SO I THINK THAT SPEAKS A LOT
ABOUT CULTURE AND WHAT YOU MODEL
IS MEN WHAT YOU IMET BACK.
I WANT TO SAY THANK YOU.
>> THANK YOU AND I'M SURE THE
SAME IS TRUE THERE YOUR
DEPARTMENT.
SO WE ARE MORE OR LESS ON TIME
AGAIN, AND SO, WE APPRECIATIVE
OF EVERYONE'S SERVICE ON THE
COUNCIL, IT'S BEEN ABSOLUTE JOY
HAVING YOU HERE.
I KNOW ALAN SAID TO ME WHEN I
RETIRED FROM COUNCIL AND I HAD
NO IDEA HOW PRESCIENT HIS WORDS
WOULD BE BUT HE SAID THANK YOU
FOR ALL YOU'VE DONE AND ALL
YOU'RE GOING TO DO.
AND LITTLE DID I KNOW WHAT THAT
WAS GOING TO MEAN BUT NOW WE DO
HAVE A BIT OF BUSINESS THAT WE
HAVE TO CONDUCT, SO WE HAVE OUR
CONCEPT CLEARANCINGS AND I'M
GOING TO TURN THE MICROPHONE
OVER TO DR. REBECCA RIZZULI,
NTHANK YOU VERY MUCH.
I WILL ASK STAFF IF THEY'RE
PRESENTING TO COME UP TO THE
LECTERN TO RESENT YOUR CONCEPTS.
SO THE FIRST--WE ARE PRESENTING
9 CONSENTS TODAY FOR YOUR
CONSIDERATION.
FOR EACH CONCEPT, THE STAFF WILL
RESENT THE CONCEPT AND THEN ASK
FOR FOR DISCUSSION AND AT THE
CONCLUSION OF THE DISCUSSION, WE
WILL ASK COUNCIL FOR CONCURRENCE
OR NOT.
FIRST WE'RE ANYTHING TO HEAR
FROM MIN LEE FROM THE DIVISION
OF POPULATION HEALTH RESEARCH,
DIPHR, PRESENTING THE BIOLOGICAL
TESTING FACILITY.
MIN IN.
>> GOOD AFTERNOON.
I HOPE EVERYONE CAN HEAR ME.
SO PROGRAM SEEKS COUNCIL APPROVE
FOR A RECOMPETE OF A INITIATIVE
BIOLOGICAL TESTING FACILITY.
THIS INITIATIVINGS SPANS BOTH
DIR AND DER IN RESEARCH AND
DEVELOPMENT OF SAFE AND
EFFECTIVE CONTRACEPTIVES IN FOR
WOMEN AND MEN.
THE BTF PROVIDES AN IMPORTANT
ROLE IN THE FACILITY PROD UBTS,
IT PROVIDES PRECLINICAL DATA
PACKAGE NECESSARY FOR FILING
NIND.
THE BTF STUDIES NEEDED AS PART
OF CRITICAL DATA PROVIDE
CRITICAL DATA FOR PHASE 1 AND 2
FOR CLINICAL STUDIES IN AN
APPROVED DRUG.
THIS FACILITY IS CRITICAL IN
MANUFACTURING THE PRODUCT
RELEASE, AND TAIBILITY TESTING
UNDER THE GMP PROTOCOL FOR
CLINICAL STUDIES PROVIED BY THE
CLINICAL TRIALS NETWORK, CCTN.
THIS CONCEPT CLEARANCE IS AN
ALIGNMENT WITH NICHD'S STRATEGIC
PLAN AND CONCEPT WITH
DEPRIVATIONMENT PROGRAMS
PRIORITY, AND THANK YOU.
ANY QUESTIONS?
COMPREHEND.
>> THANK YOU IF THERE ARE ANY
DISCUSSION OR COMMENTS ABOUT
THIS CONCEPT?
ALL RIGHT, SEEING AS THERE
AREN'T, CAN I HAVE A MEGZ FOR
APPROVAL?
>> I MOVE TO APPROVE.
>> DR. NEAL- PERRY, SECOND!
>> SECOND.
>> ALL RIGHT.
AND ALL IN FAVOR EITHER RAISE
YOUR HANDS IN THE ROOM OR IF YOU
CAN USE YOUR REACTION BUTTONS TO
VOTE ONLINE.
EXCEL EPT THAICHG YOU SO MUCH.
NEXT IS DR. TRAVIS KENT FROM THE
CONTRACEPTION RESEARCH BRANCH
WHO WILL PRESENT DEVELOPMENT OF
NOVEL OR IMPROVED INFERTILITY
TECHNOLOGIES.
>> THANK YOU REBECCA CAN
EVERYBODY HEAR ME?
I'M ACTUALLY FROM THE
PERFILLITY AND INFERTILITY
BRARCH SO THIS IS FOR THE FIB
BRANCH.
BUT GO AHEAD AND GET STARRED
PROGRAM SEEKS COUNCIL APPROVE
FOR INITIATIVE TITLED
DEVELOPMENT OF MOFLE OR IMPROVED
INFERTILITY TECHNOLOGIES.
IM PERFILLITY IMPACT15% OF ALL
COUPLES, ACCORDING TO THE CDC,
THE USE OF TECHNOLOGIES OR ART,
HAS DOUBLED OVER THE LAST
DECADE, BUT IT IS STILL
SIGNIFICANTLY BELOW DEMAND.
DESPITE THIS INCREASE THIS USAGE
ART STILL HAS A SUCCESS RATE OF
35%.
ADDITIONALLY ART IS
PROHIBITIVELY EXPENSIVE TO MANY
FAMILIES DEALING WITH
INFERTILITY.
FOR THIS, WE NEED NOW COSTS FOR
WOMEN AND MEN FOR ENFIRTILITY.
THE GOAL OF THIS INITIATIVE IS
TO ESTABLISH AN APPROACH FOCUSED
ON DEVELOPMENT AND IMPROVEMENT
DRUGS, PRODUCTS, DEVICES OR
CHANGE NOTHING CLINICAL PRACTICE
TO IMPROVE REPRODO YOU
RECOLLECTIVE OUTCOMES FOR THOSE
STRUGGLING WITH INFERTILITY.
THE USE OF THE MECHANISM WILL
GENERATE HIGH RISK, HIGH REWARD
PROGECS THAT UPON COMPLETION OF
THEIR MILESTONES WILL BE WELL
POSITIONED FOR FURTHER PRODUCT
DEVELOPMENT.
THIS PROPOSED CONCEPT ALINES
WITH 3 BRANCH PRIORITIES AND I
HOPE THAT AFTER DR. YEEP'S
PRESENTATION, IT WILL SEE IT
ALINES WELL WITH THE STRATEGIC
PLAN PROMOTING IMIEN OICOLOGGIC,
AND REPRODUCTIVE HEALTH.
GIVEN LOWERING INFERTILITY COSTS
AS A GOAL OF THIS INITIATIVE, WE
ANTICIPATE THE CROSS CUTTING
TEAMS OF HEALTH DISPARITY ANDS
WITH THAT I WILL BE HAPPY TO
FIELD ANY QUESTIONS YOU MIGHT
HAVE.
NQUESTIONS OR COMEBTS.
>> I HAVE?
>> GO AHEAD.
>> SO I JUST HAD A QUESTION
BECAUSE YOU TALK ABOUT IN THIS
ABOUT REALLOCATING EXPENSE FROM
3 OF THE [INDISCERNIBLE], HOW
MANY ARE THERE CURRENTLY?
THIS, THERE ARE 6 FUNDED SITES
WE'RE CONGRESSALLY MANDATED TO
HAVE 2 SITES FOCUSED ON
INFERTILITY.
>> SO THE NIC TREE SITES WILL GO
FROM 6 TO 3, SO YOU'RE CUTTING
BY 50%,.
>> YEAH, SO THE SHORT-TERM THE
GOAL IS TORY ALLOCATE THAT MONEY
TOWARD PRODUCT DEVELOPMENT.
THE NIC TREE WAS FOCUSED ON
TRANSLATIONAL RESEARCH BUT THOSE
HAVE FROM WHAT WE'VE SEEN, WELL
WHILE THEY'VE BEEN VERY
SUCCESSFUL IN A VARIETY OF
DIFFERENT METRICS AND I CAN ANY
INTO, THEY HAVEN'T LEGALLY
DEVELOPED CHANGES IN PRACTICE OR
TECHNOLOGIES AND TAKE THEM TO
PLAY PLACE WHERE THEY CAN
PREPARE BETTER PRODUCTS IF ARE A
LARGE TYPE OF--I HESITATE TO GO
TOO FAR INTO THE FUTURE IF
THINGS THAT HAVEN'T GONE THROUGH
OPERATIONAL PLANS AS OF YET,
BUT, THE PLAN IS FOR THIS TO BE
A 1 TIME BULLET FOR FUNDS, GET
PRODUCT DEVELOPMENT INTO A PLACE
WHERE IT CAN PROVE FORWARD AND
HOPEFULLY HAVE MORE SUCCESSFUL
PRODUCT DEVELOPMENT IN THE
FUTURE.
>> AND I GUESS IS THERE A MODEL
FOR THIS KIND OF SORT OF THE
CONTRACEPTIVE THINGS WE WERE
REVIEWING IS THERE A MODEL FOR
THE HIGH RISK, HIGH REWARD IN
TERMS OF PRODUCTIVITY BECAUSE
I'M A LITTLE CONCERNED WITH THIS
BEING SORT OF WITH THE DECREASE
OF THE REPRODUCTIVE MEDICINE
NETWORK, GIVEN NETWORKS ACROSS
THE NICH D AND NOW DECREASING
THE NICTREE AND I'M JUST A
LITTLE BIT CONCERNED ABOUT WHERE
OUR PIPELINES FOR THINGS GOING
TO COME FROM?
>> YEAH, SO, I THINK THIS--IRB
HOPE I MADE IT CLEAR THAT THIS
INVESTMENT IS TO REALLY IMPROVE
THAT PIPELINE AND MAKE IT MORE
ROBUST SO THAT WE HAVE A
PIPELINE THAT IS DIRECTLY GOING
INTO PRODUCT DEVELOPMENT SO
THINGS CAN GET TO THE MARKET AND
IMPROVE IT FOR PATIENTS OF THE
FUTURE.
THAT'S THE OVERARCHING GOAL.
AS FAR AS MODEL OF THINGS OF THE
FUTURE, I THINK YOU POINTED TO
IT, THE WAYS OF THE
CONTRACEPTIVE DEVELOPMENT
PROGRAM HAS UTILIZED THE PHASE
MECHANISM AS A WAY TORTHEM TO
GET THEM INTO THEIR COMPETITIVE
STATE FOR THE LODGERRER PROJECT,
THAT'S REALLY SORT OF A GOOD
MODEL FOR WHAT WE'RE LOOKING FOR
HERE.
I WOULD LIKE TO CALL ON DAN
JOHNSON THE HEAD OF THE FIB?
DID YOU WANT TO MAKE COMMENT IN.
>> I THINK TRAVIS STATE TODAY
PRETTY WELL, IN CONTRACEPTION, A
MOVE AWAY FROM OTHER MECHANISMS,
TOWARDS AN R61/R33 MECHANISM HAS
BEEN ENKRID EBLLY VALUABLE IN
PUTTING UP A PHASE MECHANISM
WHICH IS MILESTONE BASED WHICH
HAS REALLY DRIVEN A LOT OF
INNOVATION TOWARD THE DEVELOP
XMENT WHICH WHERE THE PROGRAM
OFFICER IN THIS CASE WANTS TO
TAKE THIS FIELD.
>> DO YOU HAVE A QUESTION.
>> I ECHO FROM THE SAME CONCERNS
AS DR. FEEDER BECAUSE IN EFFECT
YOUR CUTTING OFF OTHER AREAS OF
WERE.
I WILL GIVE AN EXAMPLE.
WHAT WE NOW UNDERSTAND ABOUT THE
HOT FLASH, ACTUALLY BEGAN WITH
THE NIC TREE.
AND SO I WOULD HAVE SOME
CONCERNS AS WELL.
THIS IS JUST A RECOMMENDATION, I
WOULD SAY IMPROVE FERTILITY
TECHNIQUES RATHER THAN
INFERTILITY TECHNIQUES, THAT'S A
SMALL THING BUT AN IMPORTANT
THING.
>> YOU'RE RIGHT.
YEAH, WELL STATED.
>> ALL RIGHT.
>> I KIND OFA WANT TO TALK
ABOUT--WITHOUT TAKING UP TOO
MUCH TIME, I REALIZE WE HAVE
THINGS TO DO HERE, BUT I'M
REALLY HOPING THIS ISN'T SEEN AS
TAKING A WAY FROM REPRODID DUKS,
THIS IS TAKING THE LIMITED POT
OF MONEY THAT WE HAVE YOU KNOW
FOR SET ASIDE MONEY, TO REALLY
IMPROVE PRODUCT DEVELOPMENT
WHICH IS AN AREA OF PERTILITY
AND INFERTILITY PORTFOLIO THAT
IS LOOKING.
OUR BASIC SCIENCE PORTFOLIO IS
ROBUST BUT THE PRODUCT
DEVELOPMENT SIDE OF THE
FERTILITY AND INFERTILITY BRANCH
IS SOMETHING WE FELT WE NEEDED
TO IMPROVE ON, AND SO THIS IS
WHAT--
>> IS THIS WITH THE SBRT BECAUSE
OFTEN TIME ITS COSTS SO MUCH
MONEY TO DO THIS KIND OF WORK
THAT PEOPLE DON'T MAKE PROGRESS.
SO, JUST KIND OF UNDERSTANDING
THAT.
HELP US UNDERSTAND A LITTLE BIT
MORE ABOUT HOW OR WHAT YOU
ENVISION THESE PROJECTS WILL
LOOK LIKE?
>> YEAH, I MEAN SOMEBODY
MENTIONED UTILIZING AI AND
MACHINE LEARNING HELP IMPROVE
VARIOUS ASSPEBTS WITHIN THE ART
PIPELINE, THAT IS A PERFECT
EXAMPLE OF SOMETHING THAT I
THINK A LITTLE BIT MORE MONEY
AND SET ASIDE DEPARTMENT COULD
HELP AND THAT'S JUST 1 EXAMPLE,
BUT THERE'S PLENTY OF OTHER
AREAS WITHIN THE WHOLE PIPELINE,
CHOOSING DIFFERENT SPERM,
CHOOSING EGGS, ALL THESE AREAS
CAN HELP IN MAKING THINGS
CHEAPER FOR PATIENTS IN THE LONG
RUN AND FOR IMPROVING THE
PIPELINE OVER ALL.
>> IS THIS KIND OF A CROSS
FERTILIZATION WITH THIS AND IS,
BRT, I'VE BEEN ON THAT CHAIR OF
THE IS ITS ACTUALLY I CAN'T
THINK OF IT INITIALLY.
>> BECAUSE A LOT OF THE PIPELINE
PROD UBTS COMING FROM THERE.
>> I ASSUME YOU'RE TAWGING ABOUT
THE SBIRs AND THE STTRs.
>> YEAH.
>> WE'RE NOT PLANNING ON
UTILIZING THOSE PARTICULAR
MECHANISMS BUT SMALL BUSINESS
BUSINESS WOULD BE MORE THAN
WELCOME TO APPLY FOR AN
INITIATIVE SUCH AS THIS,
ACTUALLY SMALL BUSINESSES ARE
WELCOME TO APPLY FOR THIS AS
WELL, BUT WE PLAN ON UTILIZING A
PHASE MECHANISM, THE SBIR AND
STTR IS NOT A PHASE MECHANISM SO
WE'RE USING A PHASE MECHANISM SO
THERE IS A POTENTIAL STOPPING
POINT IN THE MIDDLE FOR THE
PROJECTS THAT HAVE NOT MET THE
MILESTONE.
>> LET ME JUST INTERJECT HERE,
WHEN YOU APPROVE A CONCEPT,
YOU'RE NOT APPROVING A CONCEPT,
THIS CONCEPT WILL BE IN
EXISTENCE FOR 5 YEARS, AND IT
DEFINES THE AREA OF SCIENCE FOR
WHICH COUNCIL ENCORS'RE DOFERSS
OUR PROPOSAL THAT THIS IS AN
AREA OF SCIENCE THAT MERITS
DEVELOPMENT AND SO ALTHOUGH THE
PLAN SAY PHASED AWARD IN THE
CONCEPT A PHASED AWARD COMES IN
MANY DIFFERENT KINDS OF FORMS,
YOU CAN HAVE IT IN THE CONTRACT,
YOU CAN HAVE IT IN AN SBIR, CAN
YOU HAVE IT IN A REGULAR GRANT.
THERE ARE MANY DIFFERENT WAYS TO
OPPOSE MILESTONES IN THE
COOPERATIVE AGREEMENT TO GUIDE A
PRODUCT DEVELOPMENT FOR EXAMPLE,
PROPOSAL DOWN IN A VERY TIGHTLY
OVERSEEN WAY, SO I DON'T THINK
WE NEED TO BE AS SPECIFIC AS
WHAT WE ARE GOING TO DO BUT TO
HEAR YOUR INPUT ABOUT WHATY
MIGHT DO TOWARDS A FURTHERING OF
THIS RESEARCH GOAL.
>> I GUESS IN SOME WAYS THAT WAS
KIND OF AINGS A--A LITTLE BIT T
MIGHT WE DO.
BECAUSE I'M CONCERN EXCLUDE I'M
SURE DOCTOR PETERS AND CONCERNED
KNOWING THERE HAVE BEEN STUDIES
USING AI TO TRY TO COLLECT
OOCYTES AND HOW THOSE STUDIES
HAVE GONE EXACTLY NOWHERE.
AND JUST, KNOWING HOW MUCH--HOW
FRAGILE THAT POPULATION IS AND
KNOWING THAT OFTEN TIMES THEY'RE
NOT WILLING TO ENGAGE IN SOME OF
THESE, WHAT WE MIGHT CONSIDER A
HIGH RISK STUDY, AND JUST THE
AMOUNT OF MONEY THAT'S NEEDED TO
DO SOMETHING LIKE THIS, AND THE
CONCERN, THE OTHER CONCERN IS
ACTUALLY THE FACT THAT MONEY IS
BEING REDIRECTED FROM SOME
PROGRAMS THAT ARE ACTUALLY
HELPED US MOVE FORWARD IN
WOMEN'S HEALTHCARE.
AND MAYBE NOT QUITE, IN THIS
AREA, BUT MAYBE SOME OF THAT IS
ALSO REDIRECTION AND IN TERMS OF
WHAT SOME OF THE GOALS ARE AND
DIRECTIONS.
>> YEAH, SO SPEAKING TO AI
SPECIFICALLY, I THINK THAT MIGHT
FALL UNDER THE PERVIEW OF MORE
BROADLY SPEAKING LIKE I SAID,
THE KNOLL --GOAL IS TO TRY TO GT
THESE CENTERS INTO MORE OF A
PRODUCT DEVELOPMENT DIRECTION.
LIKE I SAID, WE DON'T HAVE VERY
MUCH OF THAT GOING ON IN THE
BRANCH RIGHT NOW, AND SO, THAT'S
SORT OF THE GOAL IS TO TAKE OUR
LIMITED FUNDS AND TRY AND GROW
THAT PORTION OF THE BRANCH.
YOU'RE ABNORMALITIES SLIGHTLY
RIGHT, THE NIC TREE CENTERS HAVE
BEEN AMAZING AND WE HAVE METRICS
TO SHOW THAT BUT WE ONLY HAVE A
CERTAIN AMOUNT OF MONEY SET
ASIDE THAT WE CAN TRY AND USE
TO--WITHOUT IMPACTING
INVESTIGATOR INITIATIVE AWARDS
SO WE'RE TRYING TO TAKE OUR
LIMITED RESOURCES AND EXPLORE A
DIRECTION THAT FIB FEELS NEEDS
TO BE EXPLORED.
>> CAN I STEP IN FOR A SECOND
BECAUSE I WANT TO PUT A HIGH
LEVEL ON THIS, THAT THE FEELING
HERE IS NOT TO DAMAGE AND
EXISTING PROGRAM, IT'S TO
STRENGTHEN THE PROGRAMS THAT
REMAIN, AND WITH WHAT WE'RE
SEEING IN CONTRACEPTION THERE'S
NO DOUBT THAT WIDENING THE EARLY
PROCESS,A LOWING MORE
RESEARCHERS IN, LOOKING FOR
INNOVATION, CALLING FOR
INNOVATION HAS DRAMATICALLY
HELPED THE LATER STAGE PROGRAM
IN CONTRACEPTION WITH OUR 3
CENTERS, NO DOUBT ABOUT IT WE
SEE IT COMING DOWN THE LINE AND
AS DR. KENT'S FEELING THAT THIS
SAME TIME OF MECHANISM COULD
GREATLY ENHANCE THE LARGE NIC
TREE CENTERS, THAT'S THE KEY
THING, IT'S--AFTER 30 YEARS, OR
HOWEVER ALONG IT'S BEG YOUR
PARDON GOING, IT'S A CHANGE TO
TRY TO MAKE A LONG-TERM IMPROVED
IMPACT IN THE REMAINING
PROGRAMS.
ANY FURTHER QUESTIONS IN.
>> THANK YOU.
THANK YOU ALL FOR A REALLY
TERRIFIC CONVERSATION THAT I'M
SURE WILL CONTINUE.
NEXT WE HAVE--LET'S HAVE A
MOTION FOR APPROVAL.
>> I MAKE A MOTION TO APPROVE.
>> DR. LANG.
>> SECOND.
>> DR. BUC CI-RECHTWEG.
ANYONE OPPOSED?
THANK YOU VERY MUCH.
SO NEXT WE HAVE DR. DENISE RUSSO
FROM THE MATERNAL AND PEDIATRIC
INFECTIOUS DISEASE BRARVE WHO
WILL BE PRESENTING NICHD PROGRAM
PROJECT GRANTS FOR HIV RESEARCH.
NTHANK YOU.
PROGRAM CANNED COUNCIL APPROVAL
FOR RENEWAL OF THE PROGRAM
ENTITLED PROGRAMS FOR HIV
RESEARCH, WE WANT TO STRENGTHEN
EXISTING COLLABORATION ANDS
FOSTER NEW 1S AND SEVERAL
IMPORTANT AREAS OF NICHD FOCUS,
HIV RESEARCH, THAT WILL BENEFIT
FROM ENHANCED MULTIDISCIPLINARY
APPROACHES.
THE GOAL OF THIS INITIATIVE IS
TO ENCOURAGE COLLABORATION AND
STIMULATE COLLABORATORS FOR THE
COMBINATION OF SKILLS, IDEAS AND
RESOURCES, TO USE MULTIPROJECT
RESEARCH PROGRAMS, THAT ADDRESS
NICHD, HIV, SCIENTIFIC AREAS AS
THE CENTRAL RESEARCH FOCUS.
AND THROUGH SYNERGY AMONGST
PROJECTS, YEAR-OLD MORE ROBUST
OUTCOMES THAN WOULD BE EXPECT
FRIDAY A SINGLE STUDY FOR
MULTIPLE ISOLATED STUDIES.
WE INTEND TO ENCOURAGE PARTIC
PAITIONZ IN AN EARLY CAREER HIV
INVESTIGATORS, THOSE WHO HAVE
NOT TRADITIONALLY ENGAGE INDEED
HIV RESEARCH AND MORE
ESTABLISHED HIV RESEARCHERS,
WITH LEADERSHIPS BARELY
DRIEWBTED AMONG THE GROUP.
THIS INITIATIVE HAS THE
POTENTIAL TO ADDRESS ALL NICHD
TRANSLATIONAL RESEARCHY
STRATEGIC PLANNED THEMES AND
CROSS CUTTING AREAS AND IT WILL
ALSO ALINE WIDE NIH'S OFFICE OF
MATERNAL RESEARCH AND THE
MATERNAL INFECIOUS DISEASE
BRANCHES HIV/AIDS PRIORITY.
THANK YOU.
>> THANK YOU DENISE, QUESTIONS
OR COMMENTS.
>> I HAVE JUST HAVE 1 COMMENT.
>> DR. LANG NI WANT TO THANK YOU
AND THE SPEAK ARE FOR NUMBER 1
BY PROVIDING THE PRIOR RESULTS,
THAT WAS NOT THE CASE, WHEN I
FIRST STARTED ON COUNCIL AND
IT'S REALLY HELPFUL TO SEE HOW
WHEN YOU'RE TRYING TO RENEW
SOMETHING WHAT YOU'VE DONE
BEFORE.
>> THANK YOU DR. BARKIN.
OTHER QUESTIONS OR COMMENTS?
CAN I HAVE A MOTION TO APPROVE?
>> I MOVE TO APPROVE.
>> OKAY, DR. NEAL- PERRY,
DR. CEDARS SECOND, ALL IN FAVOR
PLEASE VOTE.
NDR. [INDISCERNIBLE] SAID TO
RAISE MY HAND FOR HER.
>> DR. PERRY IS AMBI DEXTRAN
SULFATE TROWSE, SO THE NEXT
CONCEPT IS DR. SONIA LEE, CHIEF
OF INFECT YOURCANDIDATES DISEASE
BRARVE PRESENTING NAVIGATING
PEDIATRIC ADULT HEALTHCARE:
LOST IN TRANSITION.
>> THANK YOU AND GOOD EARCH WITH
IMPROVED RATES OF SURVIVAL IN
CHILDHOOD ILLNESSES, INDIVIDUALS
ARE LIVING LONGER WITH 1 OR MORE
CHRONIC CONDITIONS.
TO MEET THE NEEDS FOR CHRONIC
CONDITIONS OR DEVELOPMENTAL
MENTAL DISABILITIES AS THEY
TRANSITION FROM PEDIATRIC TO
ADULT SEBT RICK SERVICES,
BARRIERS TO SUCCESSFUL
TRANSITION, METHOD AND IT IS
MEASURES FOR DEFINING HEALTHCARE
TRANSITION, AND THE
IDENTIFICATION OF
PROMULGATEITING PRACTICES AND
THEIR IMPLEMENTATION MUST BE
BETTER UNDERSTOOD.
THE ULTIMATE GOAL OF THIS
INITIATIVE IS TO IMPROVE CARE
QUALITY AND PATIENT AND FAMILY
OUTCOMES DURING AND AN
HEALTHCARE TRANSITION.
THIS PROPOSED INITIATIVES BUILT
UPON PEDIATRIC SCIENTIFIC
RESEARCH PRIORITIES THAT WERE
IDENTIFIED BY THE NIH PEDIATRIC
RESEARCH CONSORTIUM OR NPERK,
AND A NOTICE OF SPECIAL INTEREST
ON THIS INITIATIVE.
THE NOSI HAS EXPEER I.
NINE INSTITUTES CENTERS AND
OFFICES COLLABORATES ON THE
NOTICE OF SPECIAL INTEREST, WE
HAD MULTIPLE APPLICATIONS
RECEIVE COVERING A VARIETY OF
CONDITIONS.
THIS CURRENT INIT WHYATIVE
CONCEPT ALINES WITH THE NICHD
STRATEGIC PLAN TOW INFORM AND
IVPROVE ADOLESCENT HEGHT AND THE
TRANITION TO ADULTHOOD.
>> THANK YOU SO MUCH.
ARE THERE ANY QUESTIONS OR
COMMENTS?
DR. CEDARS?
>> SORRY YOU SPOKE A BIT FAST
FOR ME, I WAS TRYING TO FOLLOW
THE PROTOCOL.
SO THERE HAVE BEEN OTHER
PROGRAMS ALMOST LIKE A
ANDMINISTRATIVE PROCESS
DEVELOPMENT SO IT SOUNDS LIKE
YOU'VE HAD OTHER GRANTS
PROPOSALS THAT HAVE DONE SIMILAR
THINGS.
NTHAT IS CORRECT.
THIS HAS DEMONSTRATED THE
INITIATIVE OF HEALTHCARE
TRANSITION, THIS 1 FOCUSED ON
HIV/AIDS IN TRANSITION FOR
HEALTHCARE FROM PEDIATRICS OR
ADULT CENTERS, AND WE DECIDED
THAT THAT WAS QUITE SUCCESSFUL,
WE GOT SEVERAL APPLICATIONS THAT
WERE FUNDED THROUGH THAT AND
THEY DEMON TRAIT THAD THERE ARE
MODELS OF TRANSITION THAT ARE
APPLICABLE ACROSS OTHER
CONDITIONS AND THERE HAVE BEEN
OTHER EN--STRATEGIESITUTES
WITHIN NIH WHO HAVE ALSO HAD
TRANSITIONINNISHIAATIVE
DEVELOPMENT AS WELL AND WE ARE
TRYING TO GET EVERYBODY TO WORK
TOGETHER ACROSS NIH ON AN
INITIATIVE THAT WILL REALLY
BENEFIT FROM DIFFERENT
CONDITIONS AND DIFFERENT GUIDE
LINES DIFFERENT PRACTICES AND
REALLY THINK ABOUT WHAT ARE THE
CORE ELEMENTS OF HEALTHCARE
TRANSITION THAT CAN BE USED MORE
BROADLY.
>> YEAH, NO, I THINK THE NEED TO
DEVELOP THAT TRANSITION, LEADING
ON THE RECEIVING END FREQUENTLY,
OF CHILDREN, YOU HAVE CHRONIC
CONDITIONS, THEY BECOME TEEN
AGENTERS AND ASLESSENTS AND
TEENAGERS AND ADULLS THAT COME
TO HAVE A BETTER TRANSITION WILL
BE EXCELLENT, I THINK WASN'T
SURE AS A CONCEPT MODALITY HOW
WORKABLE, AND JUST KNOW IT HAS
BEEN SO THANK YOU FOR CLARIFYING
THAT.
>> SHERYL?
>> THANK YOU.
I AM WILDLY ENTHUSIASTIC ABOUT
THIS BECAUSE WE SEE THAT THE
PREVALENCE OF CHILDREN WHO SCR
CHRONIC COMPLEX CONKIGZS
INCREASING DEDRAMATIC LOAMACYY
SO DEPENDING WHERE YOU ARE, IT'S
10-20%, WE DEFINE IT AS 5 OR
MORE CONDITIONS IS WE HAVE 17%
OF KIDS WE SERVE THAT WOULD MEET
THAT CRITERIA AND IN THE NEXT
5-SERVE YEARS THAT'S EXPECTED TO
GO WAY UP.
SO I'M WILDLY SUPPORTIVE OF
THIS.
SO HERE'S MY COMMENT JUST FOR
YOU ALL TO CONSIDER, WE KNOW 1
OF THE CRITICAL THINGS THAT MAKE
ITS DIFFICULT TO TRANSITION IS
OUR POLICY, HEALTH POLICIES, AND
SO I WOULD JUST ENCOURAGE
PROGRAM TO CONSIDER INCLUDING A
HEALTH SERVICES RESEARCH
PERSPECTIVE ABOUT UNDERSTANDING
EITHER SOMETHING LIKE WHAT THAT
MIGHT MEAN IN AN ECONOMIC PAY
FOR OUR PAYORS TO SUPPORT THIS,
BECAUSE THAT CONTINUINGS TO BE
SO MUCH OF THE MAIN BARRIER.
THANK YOU.
>> ALL RIGHT, OTHER QUESTIONS OR
COMMENTS.
DR. LEE.
>> I JUST WANT TO MAKE COMMENT
BECAUSE AT HRSA WE HAVE AUTISM
TRANSLATIONAL FOCUS NETWORK AND
WE FOCUS ON AUTISM BUT WE DURING
DISCUSSIONS WE THOUGHT IT WOULD
BE GREAT TO HAVE IT FOR ALL
TRANSITION FOR CHILDREN, BECAUSE
THEY NEED IT SO NOT ONLY
HEALTHCARE SYSTEM, LIKE THE
AUTISM, AND ALSO
[INDISCERNIBLE], SO I THINK FOR
THIS, ESPECIALLY FOR THE
CHILDREN ADOLESCENCE WITH LOW
SOCIAL ECONOMIC STATUS YOU
PROBABLY NEED A MULTIFACTORIAL
APPROACH IN ADDITION TO THE
SECTOR.
>> THANK YOU.
>> ALL RIGHT F. THERE'S NO OTHER
DISCUSSION OR COMMENT, DO WE
HAVE A MOTION TO APPROVE?
>> SO MOVED.
>> CEDARS AND BIANCHI,.
>> ALL RIGHT, THANK YOU NOW WE
TURN TO KATHLEEN HUN
SECURITIZATION.ER WHO WILL
PRESENT NATURAL HISTORY OF
DISORDERS SCREENABLE AND NEW
BORN CARRIERS.
>> PROGRAM SEEKS COUNCIL APPROVE
WILL TO RENEW AN INITIATIVE OF
NATURAL HISTORY DISORDERS
SCREENABLE IN THE NEW BORN
PERIOD.
STATE PROGRAMS SCREEN NEARLY
4 MILLION NEWBORNS EACH YEAR TO
RIERKS DENTIFY THOSE AT RISK FOR
THE 64 CONGENITAL CONDITIONS FOR
THE RISK SCREENING PANEL.
ADDING A CONDITION TO THE RUSK
INVOLVES A RIGOROUS PROCESS
WHICH ENCLOUDS ASSESSMENT OF HOW
WELL TREATMENTS AND ARE
AVAILABLE HISTORY OF THE
CONDITION, HOWEVER IT'S
DIFFICULT TO RECEIVE NIH FUNDING
FOR NEVERL HISTORY STUDIES TO
SUPPORT THIS BASE AS THESE
STUDIES ARE OFTEN NOT HYPOTHESIS
KRIVEN.
NATURAL HISTORY STUDIES ARE
IMPORTANT FOR DEVELOPING
TARGETED AGE APPROACHERATE AND
STAGE RELEVANT TREATMENTS THAT
ARE CURRENTLY ARE ARE MAY BECOME
PART OF RISK.
SIGNIFICANTLY A PREVIOUS VERSION
OF THE PIR FOLLOW UP INFANTS AS
FINAL FOR SMA, LAYING GROWNTD
WORK FOR SMA TO THE RUSK IN
2018.
THIS CONCEPT ALINES WITH BOTH
THE NICHD STRATEGIC PLAN AND IDB
RESEARCH PRIORITIES AND SUPPORTS
THE HUNTER KELLY NEW PORT
SCREENING RESEARCH PROGRAM.
THANK YOU.
>> THANK YOU.
ANY QUESTIONS ABOUT THIS.
>> I THINK WE SAW TODAY THAT
UNDERSTANDING NATURAL HISTORY IS
AN INCREDIBLY IMPORTANT EFFORT.
SO I FULLY SUPPORT THIS.
NA COMMENT JUST BECAUSE OF THE
EMPHASIS ON THE INTELLECTUAL
DISABILITY IN GENES, IN OF THESE
WON'T SHOW UP IN CHILDREN, IT'S
IMPORTANT TO DELIVER THAT
INFORMATION TO THAT FAMILY EVEN
THOUGH THEY MAY HAVE A GENE OF
CONCERN, SO I THINK HIGHLIGHTING
THE IMPACT ON FAMILY ANDS BEING
SENSITIVE TO THE POTENTIAL DOWN
SIDE OF THE ENROLLMENT BASED ON
THE GENETIC ASCERTAINMENT TYPE.
I SHOULD MENTION DIANEA'S VIEWS
ON THAT, TOO.
>> THANK YOU.
>> I WANT TO ASK A QUESTION
BECAUSE IT'S LIMITED TO THE
CONDITIONS ON THE RUSK, SO I'M
NOT FAMILIAR ENOUGH WITH HOW
QUICKLY THOSE GET UPDATED.
SO, THIS SHOULD BE APPLICABLE TO
A BROADER SET OF CONDITIONS.
>> WELL JUST TO CLARIFY, THE
FUNDING STUDENT OPEN TO STUDY
CONDITIONS BOTH ON THE RISK AND
NOT ON THE RUSK.
SO CONDITIONS THAT ARE CURRENTLY
BEING KREENED FOR THAT MAY 1 BAY
BE SCREENED FOR.
>> ALL RIGHT, DO I HAVE A MOTION
TO APPROVE.
>> SO MOVED.
>> DR. VANNEDDER VIEFER,
DR. ROWITCH, ALL IN FAVOR?
OKAY, THE NEXT CONCEPT WILL BE
FROM DR. CINNAMON DIXON OF THE
PEDIATRIC TRAUM AND CRITICAL
ILLNESS BRANCH FOR RESEARCH ON
DROWNING PREVENTION.
CINNAMON?
>> CAN YOU HEAR ME OKAY?
>> GOOD AFTERNOON.
PROGRAM SEEKS COUNCIL APPROVAL
FOR AN INITIATIVE TITLED
RESEARCH ON DROWNING PREVENTION.
DROWNING IS A LEADING CAUSE OF
CHILD MORTALITY, AND A GRARRING
HEALTH EQUITY ISSUE WITH
SIGNIFICANTLY HIGHER RATES OF
DROWNING DEATH AND MORBIDITY
FOUND AMONG 1-4 YEAR-OLDS
ADOLESCENTS AND OTHER
POPULATIONS.
TWO YEARS AGO, THE NICHD LED THE
FIRST EVER NIH CALL FOR DROWNING
RESEARCH WHICH IGNITED AND
FUELED THIS SCIENTIFIC FIELD
RESULT NOTHING SIGNIFICANT
INCREASES AND APPLICATION
SUBMITTED AND AWARDED, THIS
CURRENT INITIATIVE CONTINUES
MOMENTUM AND FURTHER
STRENGTHENING THE NICHD'S FOCUS
AND FISCAL COMMITMENT TO
DROWNING SCIENCE.
IT WILL CALL FOR TRANSFORMATIVE
WERE TO ADDRESS DROWNING
DISPARITIES, CONTINUED DISCOVERY
OF EVIDENT BASED INTERVENTIONS
AND IMPLEMENTATION SCIENCE TO
OVERCOME PREVENTION GAPS, AND
INEQUITYINGS IN HARM.
THIS CONCEPT ALIGNED WITH THE
NICHD'S STRATEGIC PLAN THEME 4,
AND THE PEDIATRIC TRAUMA AND
CRITICAL ILLNESS BRANCH PRIORITY
TO ADDRESS THE LEADING CAUSES OF
TRAUMATIC INJURY IN CHILDREN.
THANK YOU.
>> THANK YOU, QUESTIONS OR
COMMENTS ABOUT THIS?
>> I SHOULD JUST HAD A QUICK
QUESTION ABOUT THERE BECAUSE
WHILE IN SOME STATES WE ACTUALLY
HAVE SOME GOOD INTERVENTIONS
THAT SEEM TO BE USEFUL, THE 1
ELEMENT OF DROWNING THAT HASN'T
SHIFTED AT ALL IS DROWNING IN
BATH TUB SYSTEM THAT INCLUDED IN
THIS PROPOSAL NALL TYPES OF
DROWNING WHETHER OPEN WATER,
POOLS, OR IN BATH TUBS ARE
INCLUDED.
AND THANK YOU FOR THE QUESTION,
IT'S A GREAT 1.
>> THANK YOU.
>> ALL RIGHT, THANK YOU VERY
MUCH.
DO I HAVE A MOTION TO APPROVE.
>> MOTION TO APPROVE.
DR. BANNER MAN.
>> DR. LANG.
>> ALL IN FAVOR?
OKAY, KEEP YOUR HANDS UP FOR A
MOMENT.
WOO WE'RE DOING THIS AS LOW TECH
AS POSSIBLE.
THANK YOU VERY MUCH.
AND NOW WE'LL HEAR FROM
DR. KAREN WEINER, THE ACTING
CHIEF OF THE PEDIATRIC GROWTH
AND NUTRITION BRANCH WITH CHILD
HEALTH RESEARCH CAREER TWEPMENT
AWARD K12 MENTORING FOR
PEDIATRICIAN SCIENTISTS.
>> THANK YOU REBEC APROGRAM
SEEKS COUNCIL APPROVAL TO
REISSUE INITIATIVE ENTITLED
CHILD HEALTH DEVELOPMENT CAREER
AWARD.
THE GOAL IS TO SUPPORT THE
TRAINING MENTORING AND CAREER
DEVELOPMENT OF PEDIATRICIANS WHO
HAVE RECENTLY COMPLETED
SUBSPECIALTY FELLOWSHIP TRAINING
AND COMMENCING CAREERS IN
RESEARCH.
THIS INITIATIVE ADDRESSES THE
ONGOING NEED TO SUPPORT THE
ACQUISITION OF TECHNICAL
RESEARCH SKILLS AND TO PROVIDE A
BRIDGE BETWEEN FORMAL RESEARCH
TRAINING AND THE RESEEP OF NIH
GRANTS.
APPLICANTS MUST PROPOSE A CAREER
DEVELOPMENT PROGRAM THAT WILL
MAXIMIZE THE USE OF THEIR
EDUCATIONAL RESOURCES WHERE THE
MENTORING AND PROFESSIONAL
DEVELOPMENT OF THEIR SCHOLARS.
MANY PAST SCHOL OARS FUNDED BY
THIS PROGRAM HAVE ADVANCED TO
THE HIGH ELF LEVELS OF THE
ACADEMIC LEADER AND HAVE BEEN
REMARKABLY SUCCESSFUL IN
SECURING FUNDING.
MAJORITY OF PAST SCHOLARS REMAIN
IN ACADEMICS AND HAVE DEDICATED
THEIR PROFESSIONAL LIVES TO
ADVANCING SCIENCE AND
DISCOVERING NEW THERAPIES FOR
CHILDHOOD ILLNESSES.
THANK YOU.
THANK YOU SO MUCH.
ARE THERE QUESTIONS OR COMEBTS
ABOUT THIS CONTENT?
IS THERE A MOTION TO APPROVE IN.
>> DR. MALDONADO.
>> SECOND.
>> DR. VABDER VIEFER, ALL IN
FAVOR?
>> NOKAY, THANK YOU VERY MUCH.
AND NOW DR. LEE ALAN FROM THE
CONTRACEPTIVE RESEARCH BRANCH,
WILL PRESENT EFFECTS OF
CONTRACEPTION AS TREATMENT FOR
GUIN OICOLOGGIC DISORDERS.
>> PROGRAM SEEKS COUNCIL
APPROVAL FOR INITIATIVE TITLED
EFFECTS OF CONTRACEPTION FOR
GUIN ON COG LOGIC DISORDERS, THE
ROUGHLY 100 MARKETS OF IS MOVED
BY PEOPLE OF CONTRACEPTION,
HOWEVER MANY HORMONAL
CONTRACEPTIONS ARE USED
LONG-TERM TO USE GUIN OICOLOGGIC
CONDITIONS SUCH AS POLYCYSTIC
INDROAM, ENDOMETRIOSIS AND
FIBROID WHICH EFFECT MILLIONS OF
U.S. WOMEN, THE COMMON THEME
ACROSS THESE IS THE LACK OF
SPECIFIC TREATMENT, THOUGH
HORMONAL CONTRACEPTS OF
TYPICALLY USED BI THERE'S DAT ON
THE REGIMEN, THE GOALS OF THIS
INITIATIVE ARE TO SUGGEST
TREATMENT GUIDELINES TO PATIENT
OUTCOMES AND SATISFACTION WHILE
GENERATING DATA TO DRIVE BEST
PRACTICES AS WELL AS ATTAIN
INSIGHT INTO DRIVERS OF
CONTRACEPTIVE CHOICE AND GUIN
ONICOLOGGIC CONCISIONS THIS, IS
NICHDTO NICHD ASPIRATIONAL
GOALS, CROSS CUTTING THAT WILL
HELP DISPARITY ANDS 1 OF THE
CONTRACEPTION RESEARCH BRANCHES
PROGRAMMATIC PRIORITIES.
THANK YOU.
NTHANK YOU VERY MUCH.
ANY COMMENTS OR DISCUSSION ABOUT
THIS INITIATIVE.
>> DR. CEDARS.
SO I AGREE COMPLETELY THERE ARE
LOTS OF CONDITIONS THAT
CONTRACEPTIVE PARTICULARLY
COMBINE HORMONAL CONTRACEPTIVE
ARE USED WHICH IS PARTICULARLY
IMPORTANT IN OUR CURRENT
ENVIRONMENT WHERE THEY WANT TO
STOP PRESCRIBING CONTRACEPTIVE
BECAUSE THEY ASSUME THEY'RE ALL
FOR CONTROL BUT I'M A LITTLE
CONCERNED OR MAYBE I JUST DON'T
UNDERSTAND WOULD BE THE--BECAUSE
THERE'S NO DATA OR LACK OF DATA
ON LONG-TERM MUTES SO IT WOULD
BE IN THE LONG-TERM COMPARATIVE
TRIAL.
I'M NOT TRYING TO MICROMANAGE
WHAT WOULD HAPPEN BUT I'M TRYING
TO UNDERSTAND WHAT THE GOAL IS
BECAUSE A LOT OF THESE ARE GOING
TO BE DRUG OFF THESE AND OFF,
TRYING TO THINK OF HOW YOU'RE
GOING TO WHAT YOU'RE GOING TO BE
LOOKING AT AND WHAT YOU'RE END
POINTS ARE IF YOU'RE REALLY
LOOKING AT WHAT THE LONG-TERM
EFFECT IS.
SO 2 OF THE PRIORITIES FOR
RESEARCH BRANCH ARE DISCIPLINE
AND ALSO THE LONG-TERM HEALTH
EFFECTS OF CONTRACEPTION, SO
THAT KIND OF BRIDGES BOTH OF
THOSE.
THE SCOPE OF THIS WOULD BE MORE
SHORT-TERM, IT WOULD BE SMALLER
SCALE, CLINICAL TRIALS COMPARING
PROJESTIN OR CONTINUOUS
HAVEERCEUS CYCLIC USE FOR SOME
OF THE SCOPE IDEAS FOR THIS BUT
THE HOPE IS THAT THIS WOULD
KICKOFF THE RESEARCH PROGRAM TO
APPLY TO MAYBE LONGER TERM
AWARDS OR LARGER AWARDS.
>> I MEAN I GUESS AS SOMEBODY
WHO STUDIES PC OS FOR INSTANCE,
I WOULD RATHER SORT OF
UNDERSTAND THE FAGHT O
PHYSIOLOGY OF THE DEC THAN
WHETHER TAKING A BIRTH CONTROL
PILE CONTINUOUSLY OR CYCLICALLY
IS THE BEST WAY TO DO IT UNLESS
I'M MISSING SOMETHING, IT JUST
DOESN'T SOUND QUITE LIKE A KIND
OF BIG ENOUGH QUESTION THAT I
WOULD EXPECT NIH TO BE ANSWERING
FOR AN ENDOMEET RIOSEIS
POPULATION.
>> I WILL CERTAINLY TAKE THAT IN
MIND WHEN WRITING UP
THE--WHATEVER COMES OUT OF THIS
INITIATIVE.
I SEE SOMEONE COMING TO THE MIC.
>> DR.?
>> YES, CAN I ASK ANOTHER
QUESTION RELATED TO THIS BECAUSE
THE GOALS OF THE INITIATIVE ARE
TO SUGGEST TREATMENT GUIDELINES
AND I WASN'T SURE IF THAT'S--IF
THAT'S THE IDEA TO GENERATE TO
DO RESEARCH TO GENERATE THE
EVIDENT TO SUPPORT THE
GUIDELINES OR, YEAH, OKAY,
BECAUSE MAKING THE GUIDELINES
ARE NOT NECESSARILY THE PRIMARY
RESEARCH.
CAN I STEP IN FOR A SECOND AND
SAY THAT SOME OF THE QUESTION
SYSTEM FOCUSED ON WHETHER IT'S A
FOCUS ON GYNECOLOGIC PAIN WHICH
HAS BECOME A STRONG AND
IMPORTANT PART OF THE FOCUS ALSO
OF THE GYNECOLOGIC HEALTH AND
DISEASE BRANCH SO THIS IS REALLY
MEANT AS AN INITIATIVE THAT
WOULD WORK BETWEEN THE
CONTRACEPTIVE RESEARCH BRANCH
AND FOCUS ON GUIN ONICOLOGGIC
PAIN AND MAKE SURE THAT WAS
THERE.
>> THAT WAS MISSED IN THE
DISKRIPGZ FOR AT LEAST FOR ME
AND I WAS TRYING TO UNDERSTAND
IF WE'RE TALKING ABOUT OFF
TARGET EFFECTS, USING
CONTRACEPTIVES TO TREAT
SOMETHING ELSE FOR SOMETHING
ELSE HAPPENING THAT WERE NOT
RECOGNIZED BUT IT WAS FOCUSED
AROUND PAIN WAS LOST ON THOSE.
>> YEAH, IT LOOKS LIKE IT'S MORE
GUIN OICOLOGGIC DISEASE
TREATMENTS USED OFFLABEL TO
TREAT GUIN OICOLOGGIC CONDITIONS
SUCH AS PC OS AND--
>> FOCUS ON PAIN.
>> TREATMENT.
>> YEAH THAT'S NOT WHAT'S COMING
ACROSS.
>> I THINK IT WOULD BE IF YOU'RE
CORRECT, THE FOCUS WAS NOT IN
THE WRITE UP, BUT THOSE
OFFTARGET EFFECTS THAT YOU'RE
TALKING ABOUT, IT'S MORE THE
NONCONTRACEPTIVE RELATED
BENEFITS THAT 1 CAN OBTAIN FROM
CONTRACEPTS IS WHAT THIS WOULD
BE FOCUSED ON AND OPTIMIZING
THOSE FOR EXAMPLE, I THINK
SOMETIMES IT TAKES BETWEEN 3 AND
10 DIFFERENT ORAL CONTRACEPTIVE
PILLS TREATING ENDOMETRIOSIS FOR
FOLKS TO ACHIEVE THE EFFECTS THE
RESULTS THEY WOULD LIKE AND I
THINK 40% OF THE PATIENTS ARE
PRESCRIBED BETWEEN 3 AND 10
PILLS CROSS LINKING IT WOULD BE
POTENTIA WILY WAYS TO ACHIEVE
THAT.
--POTENTIALLY WAYS TO ACHIEVE
THAT, WHAT WORKS FOR THEM
FASTER.
>> YEAH, JUST, I WANTED TO ADD
AS SOMEONE WHO HAS DONE AND BEEN
INVOLVED WITH CLINICAL TRIALS, I
THINK IT'S IMPORTANT TO BE ABLE
TO DO, FOR LARGE CLINICAL TRIALS
AND ANSWER THESE FOR THE
PATHOPHYSIOLOGY, I THINK THAT
WOULD BE ECONOMY OF SCALE SO
THAT YOU COULD DO BOTH.
>> THANK YOU.
>> ALL RIGHT, ARE THERE ANY
OTHER QUESTIONS OR COMMENTS?
IF NOT IS THERE A MOTION TO
APPROVE?
>> MOTION TO APPROVE.
>> DR. BANNER MAN, SECOND?
>> DR. VANNEDDER VIEFER ALL IN
FAVOR?
>> I JUST THINK IT NEEDS TO BE
CLEARER IN TERMS WHAT HAVE IS
HERE, I WOULD NOT HAVE THOWF
PAIN WAS PART OF IT OR THAT
YOU'RE LOOKING OR MAYBE JUST
MORE CONCRETE, SAY, YOU KNOW
NONCONTRACEPTIVE BENEFITS.
ALL RIGHT SO WE HAVE THOSE 2
APPROVED ANYONE OPPOSED?
>> THIS IS SHARK RI, BARKIN,
WHAT I HEAR IS THAT THE CONCEPT
FROM THE CONVERSATION OF MY
COLLEAGUES WHO ARE EXPERTS IN IN
AREA IS THAT THE CONCEPT MIGHT
NEED A BIT MORE REVISION AND
WORD SMITHING BEFORE IT MIGHT BE
READY FOR A CALL FOR APPROVAL IS
THAT RIGHT DR. NEAL- PERRY?
WHAT WOULD YOU RECOMMEND HERE?
>> YEAH, I DO, I MADE
RECOMMENDATIONS IN TERMS
OF--MAKE SURE IT'S CLEAR BECAUSE
THE THINGS WE'RE KIND OF TALKING
ABOUT WHICH ARE IMPORTANT DID
NOT COME THROUGH WHEN I READ IT.
WELL AND I FOCUS ON PAIN IS
DIFFERENT THAN A FOCUS ON HOW
THE KONTY TECH ROUGH ATOM
CEPTIVE TREATS NONCONTRACEPTIVE
INDICATIONS.
SO, WHAT YOU'RE ASKING ARE 2
DIFFERENT THINGS SO IESM JUST
NOT CLEAR WHAT THEY'RE ASKING TO
LOOK AT SO IT'S HARD FOR ME TO
KNOW HOW TO VOTE.
>> IT COULD BE THAT PAIN IS
INCLUDED BUT THAT'S NOT CLEAR.
>> WELL YOU WOULD THINK--YOU USE
CONTRACEPTIVES TO TREAT PAIN IN
THE ENDOMEET RIOSEIS PATIENT BUT
THAT'S NOT WHY YOU'RE USING IT
FOR THE PC OS PATIENT, SO IF
THERE'S A BROAD--YEAH, I THINK
WE NEED TO HAVE A LITTLE
CLARIFYING LOOK.
>> LET'S DO THIS AGAIN IN
JANUARY.
>> AND LET'S GIVE A FULL
DISCUSSION AND WE'LL TAKE IT
FROM THERE.
>> I THINK THAT'S THE BEST
COURSE AT THIS POINT.
>> DOES THAT SOUND LIKE A
REASONABLE?
>> YES.
>> WHEN WE PUT THESE CONCEPTS
FORWARD, WE'RE ALL IN ON THEM SO
LET'S MAKE SURE THAT WE'RE ALL
IN.
>> ALL RIGHT, TO CLOSE THIS
PORTION OF THE MEETING DR. BRETT
MILLER WITH THE CHILD DEVELOP
EXPMENT BEHAVIOR BRANCH WILL
PRESENT THE FINAL CONCEPT ON
LEARNING DISABILITIES HUBS.
>> THANKS EVERYBODY PROGRAM
SEEKS COUNCIL APPROVAL FOR AN
INITIATIVE TITLED LEARNING AND
INNOVATION HUBS SO DESPITE
PROGRESS IN THE FIELD AND
UNDERSTANDING AND LEARNING
DISABILITIES IT NEEDS LONGER
STUDYING FOR BROADER INDIVIDUAL
OUTCOME FOR THOSE EXPERIENCING
POVERTY OR RESIDING IN LOW
SETTINGS, AND THOSE MARGINALIZED
GROUPS THAT SHOW PERFORMANCE
DIFFERENCES AND KEY LEARNING
DOMAINS, AND PROPOSE LDL HUBS
AND GARNERING UNDERREPRESENTED
TOPICS AND UNDER RESEARCH POP
EULOGIES AS WELL AS TRAINING
ANOTHER GENERATION OF SCHOLARS
OW HOW TO TACKLE THESE TIME GAP
IN A KEY COMMENT MANNER.
SO IN THIS CASE HOW CHILDREN
UTILIZE AI TO ADVANCE LEARNING
AND SOCIAL DEVELOPMENT AND THE
AFFORDANCES THAT THESE TOOLS CAN
OR SHOULD PROVIDE FOR THE
LEARNER PARTICULARLY THOSE WHO
STRUGGLE OR HAVE A SPECIFIC
LEARNING DISABILITY.
AND WITH THAT KNOWING THAT I'M
BETWEEN YOU AND DINNER, I WILL
TOP THERE.
THANK YOU.
>> THANK YOU.
COMMENTS OR QUESTIONS ON THIS
CONCEPT?
HEARING NONE, MOTION TO APPROVE.
>> SO MOVED.
>> DOCTOR IN.
>> C LANG, ALL IN FAVOR?
>> ALL RIGHT.
OKAY.
>> THANK YOU.
NTHANK YOU.
>> OKAY DR. BIANCHI, NTHANK YOU
DR. RIZZULI, THANK YOU COUNCIL
MEMBERS AND PRESENTING STAFF.
THIS CONCLUDES THE FIRST DAY OF
OUR 2 DAY NICH D ADVICERY
COUNCIL MEETING, I THANK YOU YOU
ALL FOR TEAPPEDDING AND LOOK
FORWARD TO SEEING EVERYONE AT 9
AM.
REMEMBER TODAY WE STARTED AT
9:30, TOMORROW WE START AT 9 AT
5710 B ROCKVILLE KRIEF, VERY
WHICH WEE WILL HEAR A VERY
IMPORTANT REPORT FROM A NEW
COUNCIL GROUP ON NECK ROUGH
ATOMITIZING ENTHUSIASMER O
COLITIS ON PREMATURE INFANTS.
AND THEN WE WILL START AGAIN IN
A DIFFERENT LOCATION, PLEASE
HAVE A GREAT EVENING EVERYONE
AND THANKS FOR THE RICH
DISCUSSION.
THANK YOU.
>> THANK YOU.
IN, HAVE A GOOD DINNER.
[ APPLAUSE ]