WELCOME TO THE OPEN SESSION OF
THE NIDCD ADVISORY COUNCIL AND
THE OPEN SESSION IS BEING
VIDEOCAST LIVE AND WILL BE
ARCHIVED FOR VIEWING BY MEMBERS
OF THE PUBLIC AND THE NIH STAFF
FOR ONE YEAR.
NEXT, I WANTED TO TAKE A FEW
MINUTES SENSE MEMBERS OF THE
PUBLIC ARE PRESENT TO INTRODUCE
THE COUNCIL MEMBERS.
I'LL CALL ON EACH MEMBER.
EMILY BUS.
>> I'M AT THE UNIVERSITY OF
NORTH CAROLINA CHAPEL HILL AND
STUDY HUMAN HEARING WITH A FOCUS
ON SPECIAL HEARING AND
PERCEPTION IN CHILDREN AND
ADULTS WITHOUT HEARING LOSS.
>> LARL CARNEY FROM THE
DEPARTMENT OF ENGINEERING AND
NEUROSCIENCE AT THE UNIVERSITY
OF RODCHESTER.
MY WORK IS ON AUDITORY
NEUROSCIENCE AND IN PARTICULAR
WE COMBINE PHYSIOLOGICAL
COMPUTATIONAL AND BEHAVIORAL
MEASURES OF HEARING COMPLEX
SOUNDS AND ESPECIALLY DETECTING
SIGNALS AND NOISE.
>> THANK YOU.
>> HELLO, I'M NARUPA CHUWDRY.
I STUDY THE TASTE SYSTEM FROM
THE RECEPTORS IN THE ORAL CAVITY
FROM THE MOLECULAR AND
ANATOMICAL PERSPECTIVES.
VERY INTERESTED IN A VARIETY OF
CHEMO SENSORY EFFECTS IN PEOPLE
AS WELL.
>> THANK YOU.
>> I'M VICKY WILLIAMS.
I'M IN A NEW ROLE AT THE
AMERICAN SPEECH LANGUAGE HEARING
ASSOCIATION.
MY FORMER ROLE GETS AT MY
SUBJECT MATTER EXPERTISE WHICH
IS IN CULTURAL LINGUISTIC
DIVERSITY.
I WAS FORMERLY THE CHIEF STAFF
OFFICER OF AFFAIRS AND THREE
WEEKS IN THE ROLE OF THE CEO OF
THAT ASSOCIATION.
I HAVE SOME PROFESSIONAL
MEMBERSHIP ASSOCIATION COMPRISED
OF SPEECH LANGUAGE PATHOLOGISTS
AUDIOLOGISTS.
>> THANK YOU.
>> HI, I'M IN THE DEPARTMENT OF
NEURAL BIOLOGY AT THE UNIVERSITY
OF CHICAGO.
THE WORK IN MY LAB IS FOCUSSED
ON THE SENSORY RECEPTORS CELLS
OF THE INNER YEAR AND LOOKING AT
THE -- INNER HERE AND THE
VESTIBULAR NEURONS THAT SERVE A
SENSE OF BALANCE.
>> MR. RICHARD EINHORN.
>> HI, EVERYONE.
I HAVE A CONSULTING COMPANY
CALLED EINHORN CONSULTING AND WE
DO WORK FOR VARIOUS COMPANIES
HEARING HEALTH TECHNOLOGY AND
I'M ALSO A HEARING HEALTH
ADVOCATE AND PUBLISHED MANY
ARTICLES AND GIVE MANY TALKS ON
VARIOUS HEARING TECHNOLOGY THAT
CAN BE USEFUL FOR PEOPLE.
>> THANK YOU.
>> DR. WILSON.
>> I'M PROFESSOR IN THE
ELECTRICAL AND COMPUTER
ENGINEERING DEPARTMENT AND THE
INSTITUTE FOR SYSTEMS RESEARCH
AT THE UNIVERSITY OF MARYLAND
COLLEGE PARK.
I DO FUNDAMENTAL RESEARCH IN
SPEECH PRODUCTION, ACOUSTICS AND
ALSO LOOK AT THE RESEARCH IN
OTHER AREAS AND RECENTLY LOOKING
AT HOW WE CAN USE SPEECH AS A
BEHAVIORAL SIGNAL FOR
UNDERSTANDING NEURAL MOTOR
COORDINATION.
LOOKING SPECIFICALLY AT MENTAL
HEALTH ISSUES SUCH AS
DEPRESSION, SCHIZOPHRENIA AND
BIPOLARISM.
>> DR. GOFFMAN.
>> I'M AT CALIER CENTER AT THE
UNIVERSITY OF TEXAS AT DALLAS.
I STUDY LANGUAGE, SPEECH AND
MOTOR DEVELOPMENT IN BOTH CHIP
CAL AND ATYPICAL LEARNERS WITH A
FOCUS ON CHILDREN WITH
DEVELOPMENT LANGUAGE DISORDER.
.
>> THANK YOU.
DR. ANDY GROVES.
>> I'M IN THE DEPARTMENT OF
NEUROSCIENCE AND MOLECULAR HUMAN
GENETICS AT BAYLOR COLLEGE OF
MEDICINE IN HOUSTON, TEXAS.
MY RESEARCH FOR MANY YEARS HAS
BEEN INVOLVED IN THE DEVELOPMENT
AND REGENERATION OF THE INNER
EAR BUT RECENTLY MY LAB HAS
STARTED TO LOOK AT THE
DEVELOPMENT AND HUMAN DISEASES
INVOLVED IN THE MIDDLE AND
EXTERNAL EARS AS WELL.
>> THANK YOU.
DR. HILLIS.
>> HI, I'M RG HILLIS A PROFESSOR
OF NEUROLOGY AT JOHNS HOPKINS
AND LANGUAGE RECOVERY AFTER
STROKE AND STUDY A PHASIA AND
DONE SOME CLINICAL TRIALS AND
TREATMENT OF APHASIA.
>> DR. HILLMAN.
>> I'M THE RESEARCH DIRECTOR AND
CO-DIRECTOR OF THE CENTER FOR
LARYNGEAL VIRGINIA -- SURGERY
AND I DIAGNOSE, TREAT AND STUDY
LARYNGEAL VOICE DISORDERS.
>> THANK YOU.
MS. BARBARA KELLY.
>> I'M EXECUTIVE DIRECTOR OF THE
HEARING LOSS ASSOCIATION OF
AMERICA.
WE'RE A CONSUMER ORGANIZATION
AND OUR COMMUNITY IS PEOPLE WHO
WANT TO STAY IN THE HEARING
WORLD WITH TECHNOLOGY.
WE'RE VERY INTERESTED IN
RESEARCH THAT CURES OR ANYTHING
TO MITIGATE HEARING LOSS SO
PEOPLE CAN LIVE WELL WITH HAIR
HEARING LOSS AND WE OPEN THE
WORLD OF COMMUNICATION THROUGH
INFORMATION, EDUCATION SUPPORT
AND ADVOCACY AND HAVE A PUBLIC
POLICY AGENDA AT THE NATIONAL
LEVEL AND HAVE CHAPTERS ACROSS
THE COUNTRY.
>> GREAT, THANK YOU.
>> DR. LALWANI.
>> GOOD AFTERNOON, EVERYBODY.
I'M AT COLOMBIA UNIVERSITY IN
NEW YORK CITY.
MY RESEARCH PREVIOUSLY FOCUSSED
ON DEAFNESS AND GENE THERAPY FOR
HEARING LOSS.
MORE RECENTLY WE FOCUSSED ON
CREATING THE TOOLS LIKE
MICRONEEDLES TO MAKE IT POSSIBLE
TO OPEN UP TO PRECISION MEDICINE
OF THE INNER EAR.
>> VERY GOOD, THANK YOU.
DR. MORTON.
>> HI, GOOD AFTERNOON.
I'M A MEDICAL GENETICIST AT
BRIGHAM AND WOMEN'S HOSPITAL AND
AT HARVARD MEDICAL SCHOOL.
AS A GENETICIST I'VE HAD A LONG
STANDING INTEREST IN THE GENES
AND VARIANTS THAT UNDER LIE
DEAFNESS AND HARD OF HEARING AND
WE'RE INTERESTED IN TRYING TO DO
SOME THERAPY TO GENE THERAPY TO
ACTUALLY MITIGATE THE HEARING
LOSS.
ALSO I'M VERY INTERESTED IN
IMPLEMENTING GENETICS INTO
NEWBORN HEARING SCREENING.
>> THANK YOU.
MS. GREENE.
>> GOOD AFTERNOON.
I AM AN ATTORNEY BY TRADE AND
WORK AS AN UNDER WRITING COUNSEL
FOR A NATIONAL TITLE COMPANY AND
LUCKY TO BE A MEMBER OF THIS
COUNCIL AND MY PARTICULAR
INTEREST AS A PARENT OF A YOUNG
CHILD IS ADVOCACY AND WORKING
FOR THE COMMUNITY OF THE PEOPLE
WITH MY CHILD'S SYNDROME AND FOR
CHILDREN IN EARLY INTERVENTION
FOR HEARING LOSS.
THANK YOU.
>> THANK YOU.
NEXT DR. DAN SINGS.
>> I'M A PROFESSOR AT THE CENTER
FOR NEUROSCIENCE AT NEW YORK
CITY UNIVERSITY AND BASIC
RESEARCH SCIENTIST AND MY WORK
CENTERS ON HOW
[AUDIO DIGITIZING]
WHICH IS THE LOSS AND EFFECTS OF
THE CENTRAL INFORMATION SYSTEM
AND THE AFFECTS OF EARLY
LEARNING.
>> THANK YOU, DAN.
>> DR. STURBRIDGE.
>> I'M PROFESSOR OF NEUROSCIENCE
AT CASE WESTERN RESERVE
UNIVERSITY IN SNOWY CLEVELAND
AND WORK ON SYNAPTIC INNER
CONNECTIONS AND TRACING THROUGH
HOW INFORMATION IS PROCESSED
THROUGH CHAIN OF NEURONS AND WE
WORK IN A VARIETY OF SYSTEMS.
THE AREA THAT'S RELEVANT TO THIS
COMMITTEE IS WE WORK A LOT ON
THE OLFACTORY AND TRYING TO
UNDERSTAND WHAT THE LOCAL
CIRCUIT IS DOING AND THE
COMPUTATION IS.
>> THANK YOU.
DR. WALLHAGGEN.
>> I'M A PROFESSOR IN THE
DEPARTMENT OF NURSING AT THE OF
CALIFORNIA SAN FRANCISCO.
I'M IN GERONTOLOGY AND
INTERESTED IN HEARING LOSS AND
THE EXPERIENCE OF HEARING LOSS
IN OLDER ADULTS AND FROM A
PRACTITIONER PERSPECTIVE I'M
EXTREMELY INTERESTED IN THE
IMPACT HEARING LOSS ON
COMMUNICATION WITHIN THE HEALTH
CARE SYSTEM AND WORKING A LOT ON
COMMUNICATION ACCESS TRYING TO
ASSURE THAT THE COMMUNICATION
WITH PRACTITIONERS IS UNDERSTOOD
AND SO PEOPLE GET THEIR WISHES
ADDRESSED AND HEARING LOSS IS
PAID ATTENTION TO AND THAT
INCLUDES THE FACT I DO A LOT OF
TEACHING FOR PRACTITIONERS TO
HELP THEM UNDERSTAND BETTER THE
IMPACT OF HEARING LOSS ON OLDER
ADULTS.
>> THANK YOU, MEG.
>> AND WE HAVE THREE EX-OFFICIO
MEMBERS.
DR. BECK FROM THE DEPARTMENT OF
VETERAN AFFAIRS.
IS DR. BECK HERE?
OR DR. SCHAEFER FOR DR. BECK?
>> I'M HERE.
>> I'M A REHAB SPECIALIST FOR
THE DEPARTMENT OF VETERANS
AFFAIRS IN WASHINGTON, D.C. AND
WORK IN POLICY AND PLANNING AND
SEVERAL AREAS WITH THE PROGRAM
OFFICE INCLUDING HEARING
CONSERVATION, TELEHEALTH, RURAL
HEALTH AND EDUCATION,
COMPENSATION AND HEARING AND
HEARING AIDS AND SPECIAL
DISABILITIES.
>> THANK YOU.
DR. NELSON FROM THE DEPARTMENT
OF DEFENSE.
>> I SERVE AT THE HEARING CENTER
OF EXCELLENCE AND FOCUS ON
HEALTH IN SERVICE MEMBERS AND
BENEFICIARIES AND VETERANS AND
RECENTLY BEEN TASKED WITH
GUIDING THE PROGRAM.
>> LAST, MS. FREEMAN.
>> I'M FROM THE NATIONAL
INSTITUTE FOR OCCUPATIONAL
SAFETY AND HEALTH AND
AUDIOLOGIST THAT WORKS ON THE
NOISE AND ACOUSTIC TEAM AND WORK
ON PREVENTING HEARING LOSS ON
WORKERS FROM EXPOSURE AND LOOK
AT EPI STUDIES OF HEARING LOSS.
>>.
THANK YOU FOR THE INTRODUCTIONS.
NEXT WE'LL MOVE ON TO
CONSIDERATION OF THE MINUTES AND
THE MINUTES OF THE COUNCIL
RECENTLY POSTED ON THE ADVISORY
COUNCIL WEBSITE AND I'M
WONDERING IF ANYONE HAS
ADDITIONS OR CORRECTIONS TO
THESE MINUTES.
HEARING NONE, IS THERE A MOTION
THEY BE APPROVED AS WRITTEN.
THANK YOU.
IS ANYONE IN FAVOR?
WE'RE GOOD WITH THE VOTE.
>> AND THE LAST ADMINISTRATIVE
ISSUE IS DATES OF FUTURE
MEETINGS OF THIS COUNCIL.
COUNCIL MEETING DATES ARE POSTED
THROUGH 2023 AND THESE ARE
LISTED ON THE SLIDE AND IN YOUR
WORKBOOK.
THE NEXT MEETING OF THIS COUNCIL
WILL BE MAY 19 AND 20 AND SADLY
WE WERE HOPING FOR AN IN PERSON
MEETING BUT THE NIH CAME OUT
THIS WEEK SAYING WE'D CONTINUE
WITH VIRTUAL MEETINGS AT LEAST
THROUGH THE SUMMER.
SO ONE MORE VIRTUAL MEETING AND
HOPEFULLY THAT'S IT.
I WAS GOING TO TRY TO PROVIDE
UPDATES AND I WAS GOING TO
TRUNCATE THE REPORT BECAUSE I
THINK DR. HODES IS PROBABLY
HERE.
LET'S GO TO THE NEXT SLIDE.
I WANTED TO BEGIN BY THANKING
DR. COLLINS AND ACKNOWLEDGING
HIS 12 YEARS OF SERVICE AS
DIRECTOR OF THE NIH.
I THINK MOST OF YOU KNOW THIS IS
A PRESIDENTIAL APPOINTMENT AND
HE'S THE ONLY NIH DIRECTOR TO
HAVE SERVED UNDER MORE THAN ONE
ADMINISTRATION.
HE WAS APPOINTED BY PRESIDENT
OBAMA AND THEN SERVED IN THE
ADMINISTRATIONS OF PRESIDENT
TRUMP AND NOW PRESIDENT BIDEN.
THE NIH HELD A VIRTUAL FAREWELL
TO CELEBRATE DR. COLLINS'
REMARKABLE TENURE AND MANY
PEOPLE GAVE TRIBUTES INCLUDING
JANE GOODALL AND HENRY LEWIS
BATES JUNIOR AND INVITE TO YOU
LOOK AT THAT POST ON THE NIH
WEBSITE AS WELL AS THE JOYED
CAST YOUTUBE CHANNEL.
ON DECEMBER 20, DR. LARRY TABAK
ASSUMED THE ROLE OF ACTING
DIRECTOR OF THE NIH TO LEAD THE
ADMINISTRATION AND HAS SERVED AS
DEPUTY DIRECTOR SINCE AUGUST
2010 AND FOR 10 YEARS WAS THE
DIRECTOR OF INSTITUTE OF
CRANIOFACIAL RESEARCH AND WILL
SUSTAIN DR. COLLINS' LEGACY
DURING THIS TIME OF RESEARCH.
I'D LIKE TO RECOGNIZE THE RECENT
APPOINTMENT OF MS. KARIMBAKAS.
SHE CAME TO US FROM THE NIDDK IN
2015 AND SHE LED THE TEAM THAT
PRODUCED THE VIDEO JOURNEY OF
SOUND TO THE BRAIN WHICH HAS
RECEIVED MILLIONS OF VIEWS ON
YOUTUBE AND FORMALLY ASSUMED HER
ROLE OF CHIEF OF THIS OFFICE
JANUARY 3 THIS YEAR AND I LOOK
FORWARD TO CONTINUING TO WORK
WITH JOANNE IN THIS ROLE.
I'LL SKIP THE NEXT SLIDE BECAUSE
BEFORE BERNARD WILL BE HERE TO
TALK ABOUT IT IN MORE DETAIL
LATER TODAY.
I WANTED TO MENTION A COUPLE
VIDEOCASTS WE HAVE DEVELOPED.
THE FIRST WAS TO DISCUSS OUR
PROGRAMS AND TRAINING OF
CLINICIAN SCIENTISTS AND SURGEON
SCIENTISTS WITH THREE NEW
PROGRAMS DEVELOPED WITH OUR
NIDCD EXTRAMURAL TRAINING
OFFICER.
HE AND I HOSTED A WEBINAR THIS
PAST OCTOBER TO FURTHER DISCUSS
THE PROGRAMS WHICH SUPPORT
RESEARCH EXPERIENCES AND
MENTORING NETWORKS AND RESEARCH
TRAINING FOR THIS GROUP AND THEN
NEXT IS SHOWING ADDITIONAL
PROGRAMS THAT WE HOPE WILL
PROMOTE OUR EFFORTS TO TRAINING
A DIVERSE WORKFORCE.
SO THESE PROGRAMS ARE TARGETING
INDIVIDUALS FROM UNDER
REPRESENTED GROUPS AND
INDIVIDUALS WITH HEARING LOSS
AND THOSE FROM DISADVANTAGED
BACKGROUNDS AND WOMEN.
THESE PROGRAMS ARE FOCUSSED ON
THE GRADUATE AND FACULTY LEVEL
AND FOCUSSED AGAIN ON VENTURING
AND RESEARCH EXPERIENCES.
WE PLAN TO PRESENT A WEBINAR TO
FURTHER DISCUSS THESE PROGRAMS
ON FEBRUARY 25.
LAST, OUR STRATEGIC PLAN IS WELL
UNDERWAY.
WE HAVE COMPLETE THE FIRST TWO
MAJOR COMPONENTS OF THIS PROGRAM
IN JULY AND THEN THIS PAST
DECEMBER.
AND DR. LARA COLE ALONG WITH OUR
LIAISONS WILL BE GIVING A MORE
DETAILED UPDATE LATER TODAY.
THAT IS A VERY QUICK UPDATE AND
I WANTED TO GO AHEAD AND PROCEED
TO WELCOME DR. RICHARD HODES.
DR. HODES IS THE DIRECTOR OF THE
NATIONAL INSTITUTE ON AGING OR
THE NIA, WHERE HE'S BEEN
DIRECTOR SINCE 1993.
IT LEADS THE GOVERNMENT'S
SUPPORT AND RESEARCH ON THE
BIOLOGICAL, CLINICAL AND
BEHAVIORAL AND SOCIAL ASPECTS OF
AGING AND LEADING THE FROM
EFFORT TO FIND EFFECTIVE WAYS TO
TREAT OR PREVENT ALZHEIMER'S
DISEASE.
IN ADDITION TO HIS LEADERSHIP AT
NIA, HE MAINTAINS A RESEARCH
LABORATORY AT THE NATIONAL
CANCER INSTITUTE WHICH IS
FOCUSSED ON THE CELLULAR AND
MOLECULAR MECHANISMS THAT
REGULATE THE IMMUNE RESPONSE.
RICHARD, WE LOOK FORWARD TO
HEARING WHAT YOU HAVE TO SHARE
AND TO CONTINUING TO FIND WAYS
THAT WE CAN PARTNER WITH THE
NIA.
WELCOME.
>> THANK YOU, I APPRECIATE THE
CHANCE TO SPEAK WITH YOU AND
COUNCIL AS YOU SAY TO LET PEOPLE
KNOW OF THE GREAT HISTORY AND
CURRENT INTEREST IN FUTURE WITH
OUR INSTITUTES WORKING CLOSELY
TOGETHER.
THIS IS JUST AN ILLUSTRATE OF
NIA'S ORGANIZATIONAL STRUCTURE.
MAYBE MOST RELEVANT IS TO NOTE
AS THE CASE FOR NIDDK WE HAVE A
RANGE OF BIOLOGY OF AGING,
GERIATRICS AND NEUROSCIENCE AND
BEHAVIORAL RESEARCH.
WE SHARE OPPORTUNITIES AND
INTERACTIONS WITH YOU ACROSS
THESE MANY DIMENSIONS OF
BIOMEDICAL BEHAVIORAL RESEARCH.
SO PROENGS
APPROPRIATIONS AND SPENDING.
NIA HAS GONE UNDER AN
UNPRECEDENTED FUNDING.
AS RECENTLY AS 20 AND
APPROPRIATION LEVEL WAS $1
BILLION AND NOW IN 2021
APPROACHING $4 BILLION.
SINCE 2015 AND THIS WAS AN
INCREASE IN WHAT WE CAN SUPPORT
AND FOR INTERACTIONS WITH NIDDK
AND OTHER INSTITUTES AN
OPPORTUNITY TO COLLABORATE TO
MAKE BEST USE OF THE KIND OF
RESEARCH THAT IS BEING SUPPORTED
BY OUR DOLLARS AND THE CHARGE
THAT COMES FROM CONGRESSIONAL
APPROPRIATIONS AND PRIORITIES.
SO EVEN AS WE EXPAND OUR
RESEARCH, IF YOU LOOK AT THE NIH
WIDE RESEARCH PORTFOLIO IN
COMPETING AWARDS, THESE ARE NEW
AWARDS GIVEN OUT EACH HERE.
IF YOU LOOK AT 2011 THERE'S
ABOUT $100 MILLION OF COMPETING
AWARDS FOR NIH AND ALZHEIMERS
RELATED DEMENTIA AND THIS
ILLUSTRATE THE APPROPRIATION.
A LOT OF THIS HAS BEEN TARGETED
FUNDING FOR ALZHEIMER'S FUNDING
RELATED RESEARCH AND THE COLORED
BARS SHOWS THE SPECTRUM FROM THE
BASIC MOLECULAR PATHOGENESIS
THROUGH DIAGNOSIS, MONITORING
AND TRIALS AND PARALLELING THE
INTERVENTION AND BASIC SCIENCE
WHICH IS PART OF THE PORTFOLIO.
AS WE SPEND OF COURSE WE HAVE
BEGUN WITH PEOPLE ALREADY
WORKING IN ALZHEIMERS RELATED
RESEARCH AND IT'S IMPORTANT TO
TRACK AND MAKE EFFORTS TO BRING
NEW PEOPLE INTO THE FIELD OF
ALZHEIMER'S RELATED DEMENTIA
RESEARCH AND AS WE LOOK FROM
2015 TO 2020 A THIRD OF THE
RELATED DEMENTIA AWARDEE NEW OR
EARLY STAGE INVESTIGATORS AND WE
LOOKED AT ANOTHER CATEGORY NEW
TO THE FIELD.
THIS WAS DEFINED BY INDIVIDUAL
WHO'S HAD NEVER EVEN APPLIED FOR
RESEARCH IN ALZHEIMER'S DISEASE
BEFORE AND ABOUT A FOURTH OVER
THIS PERIOD WERE TO THESE
INVESTIGATORS.
I POINT THIS OUT BECAUSE IT'S
RELEVANT FOR THE OPPORTUNITIES
TO NIDDK FUNDED INVESTIGATORS
AND PEOPLE WORKING IN THE AREAS
OF RESEARCH AND INSTITUTES WE
SUPPORT PART OF THIS EFFORT AS
WELL.
SO AMONG THE WAYS IN WHICH WE
WANTED TO MAXIMIZE THE
INVOLVEMENT OF RESEARCHERS
ACROSS ALL THE INSTITUTES OF NIH
WAS THIS PROGRAM IN WHICH WE
OFFERED TO FUND ADMINISTRATIVE
SUPPLEMENTS TO THE GRANTS OF ANY
INSTITUTE AND CENTER WERE
THEMSELVES NOT ALZHEIMER'S
RELATED DEMENTIAS SPECIFIC BUT
WITHIN THE SCOPE OF THE ORIGINAL
GRANT THERE WAS THE OPPORTUNITY
TO EXPAND RESEARCH AND MAKE IT
RELEVANT EXPLICITLY ALZHEIMER'S
DISEASE.
FOR EXAMPLE, THIS LAST YEAR IN
2021 WE FUNDED 267 SUPPLEMENTS
ACROSS ALL THE INSTITUTES AND
NIA AND TOTAL ABOUT $89 MILLION.
YOU SEE NIDDK, FOR EXAMPLE,
THERE WERE 12 SUPPLEMENTS
FUNDED.
NEXT SLIDE LOOKS AT THE WAYS IN
WHICH INCLUDING THIS WE HAVE
FUNDED RESEARCH OF OTHER
INSTITUTE SINCE 2016 WHEN THE
INCREASE IN TARGETED RESEARCH TO
ALZHEIMER'S DISEASE CAME TO NIA
AND EACH YEAR THERE'S BEEN
SUBSTANTIAL FUNDING OF RESEARCH
SOME BY SUPPLEMENTS OTHER BY
CO-FUNDING AND OTHERS BY FUNDING
APPLICATIONS THAT ARE BEYOND THE
PAY LINE FOR NIDDK WHICH ARE
RELEVANT TO ALZHEIMER'S RELATED
DEMENTIA AND THIS TO ENCOURAGE
OPPORTUNITIES TO WORK TOGETHER
IN THIS DOMAIN.
THEN THE THEME OF HEALTH EQUITY
MENTIONED.
OUR PREVIOUS DEPUTY DIRECTOR
WILL BE SPEAKING WITH YOU TOO
AND THIS IS THE HEART OF OUR
MISSION ILLUSTRATING SOME ASPECT
OF IT.
ONE OF THE CHALLENGES WE FACE
AROUND DIVERSITY AND INCLUSION
HAS BEEN IN OUR CLINICAL
RESEARCH AND TRIALS.
A LOT OF EFFORT TO DO BETTER
THAN WE HAVE DONE IN THE AREAS
OF ALZHEIMER'S DISEASE RESEARCH
AND RECRUITING PEOPLE FROM
DIVERSE PARTS INTO STUDIES AND
RESOURCES SHOWN HERE AND
RECRUITMENT STRATEGY AND PRODUCT
OF PUBLIC PRIVATE PARTNERSHIPS
AND SEARCHABLE DATABASE FOR
ENHANCING ENGAGE
THE AND OUTREACH THEME AND
CUSTOMIZABLE RECRUITMENT
RELEVANT NOT JUST IN ALZHEIMER'S
OR NIA BUT RECRUITMENT IN
GENERAL WITH GREATER DIVERSITY.
I'D LIKE TO TALK ABOUT WHAT'S
BEEN HAPPENING IN THE PAST AND
CURRENT AND COLLABORATIONS
BETWEEN OUR TWO INSTITUTES AND
THERE'S MULTIPLE.
FOR EXAMPLE, IN 2013, THERE WAS
A JOINTLY SPONSORED WORKSHOP ON
CENTRAL MECHANISMS MUCH AGE AND
HEARING LOSS THAT LED TO AN RFA
IN 2018.
THERE WERE FOUR AWARDS FUNDED.
TWO FROM NIA AND TWO NIDCD AND
IT'S ONE IMPORTANT AREA OF THE
JOINT INTEREST.
NEXT SLIDE SIMILARLY FOR THE
VESTIBULAR SYSTEM IMBALANCE IN
2019 OUR TWO INSTITUTES
SPONSORED A JOINT WORKSHOP WITH
THE OUTCOMES REPORTED IN THE
PUBLICATION NOTED HERE.
AND THE NEXT SLIDE AGAIN LEADING
TO AN RFA THAT WAS JOINTLY
FUNDED AND YOU CAN SEE HERE
HIGHLY SUCCESSFUL FUNDED
APPLICATIONS BY NIA AND ONE BY
NIDCD TO CONTINUE THROUGH THE
CURRENT TAKING ADVANTAGE OF OUR
JOINT INTEREST IN LOOKING FOR
OPPORTUNITIES TO JOINTLY SPONSOR
RESEARCH.
THE ICELANDIC STUDY STARTED WITH
ONE NIA HAS BEEN SUPPORTING FOR
YEARS.
BECAUSE OF THE EXTENSIVE RECORD
KEEPING IN ICELAND, IT'S AN
ENORMOUS INFRASTRUCTURE FOR
LONGITUDINAL STUDIES AND NIDCD
PARTICIPATED BY ADDING MEASURES
TO THE STUDIES COMBINED WITH
MULTIPLE DIMENSIONS AND A REAL
RICHNESS OF DATA AND AUGMENTS
THE STUDY ITSELF AS WELL AS
INFORMING AREAS OF INTEREST TO
NIDCD.
SOME OUTCOMES FROM THAT STUDY
HAD THE MOST EFFECTIVE FACTORS
FOR HEARING LOSS THERE AND WAS
SOME GWAS IN THIS COUNTRY THAT
POINTED TO GENES OF POTENTIAL
INTEREST WITH HAIR LOSS AS ONE
OF THE GENE ASSOCIATION SHOWN.
CELL STUDIES WITH PARTICIPATION
COLLABORATIVE IN SOME CASES
NOTED IF YOU LOOK AT THE RISK
FACTORS FOR DECREASE IN PHYSICAL
ACTIVITY WITH TIME OVER AGE IT
COULD BE NOTED HEARING LOSS IS
SUBSTANTIAL.
THE FIGURE TO THE LEFT SHOWS
OVER TIME OF DAY THE AMOUNT OF
PHYSICAL ACTIVITY IS AND IF YOU
LOOK RELATIVE TO THE INDIVIDUALS
WITH NO HEARING LOSS AND
PROGRESSIVE INCREASES IN
DECREASING PHYSICAL ACTIVITY
OVER TIME OVER AGE AS ADULTS
AGE.
VISION AND HEARING IMPAIRMENT
HAVE BEEN INCREASED WITH
LONELILINESS AND AS WE LOOK AT
THE RISK FACTORS FOR THESE
ATTRIBUTES IN THE QUALITY OF
LIFE IN OLDER ADULTS.
AS WE LOOK AT COGNITIVE CHANGE
AND RELATIONSHIP TO DEMENTIA
ILLUSTRATED HERE AGAIN HEARING
LOSS IS ASSOCIATED WITH POOR
PERFORMANCE AND MEMORY TEST IN
PARTICULAR AND NOTABLE NOT
COMPLETELY UNDERSTOOD YET THOSE
WITH HIGH GLUCOSE LEVELS OR
THOSE IN WHOM THERE WAS A STRONG
ASSOCIATION WITH WORSE COGNITIVE
FUNCTION AMONG ONLY THOSE WITH
HEARING LOSS SUGGESTING HEARING
IMPAIRMENT INCREASES WITH
INDIVIDUALS WITH HIGH GLUCOSE ON
PERFORMING AND LEARNING AND
THESE ARE THE KINDS OF STUDIES
WITH INCLUSION OF THESE KINDS OF
FUNCTIONAL DIMENSIONS IN THE
LARGER LONGITUDINAL STUDIES IS
GOING TO BE CRITICAL.
AROUND THE THEME OF DEMENTIA IF
YOU FOLLOW INDIVIDUALS
LONGITUDINAL OVER TIME AND OVER
THE YEARS LOOK AT THE DECREASE
IN COGNITIVE FUNCTION, THOSE WHO
HAVE GOOD MIDDLE OR POOR
MULTI-SENSORY FUNCTION, SO THIS
IS CHARACTERIZED BY
MULTI-SENSORY IMPAIRMENT SHOW
PROGRESSIVE DECREASE IN FUNCTION
GREATER THAN THOSE WITH
IMPAIRMENT.
THOSE WHO WERE CALLED POOR IN
TERMS OF THEIR MULTI-SENSORY
FUNCTION, THERE WAS A TWOFOLD
GREATER DECREASE IN COGNITIVE
FUNCTION AND FOR THOSE EVEN WITH
THE INTERMEDIATE SCORES RISK OF
DEMENTIA.
ANOTHER INTERESTING ONE POINTS
TO THE POTENTIAL FOR A
DIFFERENCE AND AMONG INDIVIDUALS
WITH DEMENTIA ONE OF THE
GREATEST PROBLEMS AND LEADS TO
THE INSTITUTIONALIZATION AND
INABILITY TO STAY AT HOME ARE
IMPAIRMENT AND IT'S ILLUSTRATED
HERE IN THE FIGURE IS AS YOU
MOVE TOWARDS GREATER HEARING
LOSS FROM LEFT TO RIGHT, THE
NUMBER OF NEURO PSYCHIATRIC
SYMPTOMS INCREASES AND NOTABLY
SHIFTED UP FOR THOSE NOT HEARING
AID USERS VERSUS THOSE USING A
HEARING AID AND THERE'S AN
ASSOCIATION WITH USE OF HEARING
AIDS AND FEWER NEURO PSYCHIATRIC
IMPAIRMENT AND DEMENTIA.
THIS IS LEADING TO STUDIES AND
THOSE COLLABORATING IN THE
RANDOMIZED CONTROL STUDIES TO
LOOK AT DEMONSTRATION OF
CAUSALITY AND INTERVENTION THAT
CAN MAKE A GREAT DIFFERENCE IN
QUALITY OF LIFE FOR OLDER
ADULTS.
I'LL CLOSE WITH A SERIES OF
LINKS TO WHAT GOES ON AT NIA
INCLUDING A BLOG WHERE IF YOU
WANT TO SCRIBE WE'D INVITE A
GUEST PRESENTATION FROM NIDCD.
SO LET ME THANK YOU FOR A CHANCE
TO REINFORCE AND FOR THE
COLLABORATION BETWEEN INSTITUTES
AND HAVE A CONVERSATION WITH YOU
ABOUT THAT.
>> THANK YOU SO MUCH, RICHARD.
THAT'S SO INTERESTING.
I LEARN SOMETHING EVERY TIME I
TALK TO YOU SO I DIDN'T EVEN
KNOW ABOUT THE EARLY EFFORTS
THAT PREDATED ME.
BEFORE WE OPEN THIS UP FOR
QUESTIONS, ASK DR. AMY PAREMBA
THE PROGRAM OFFICER TO SAY WORDS
ABOUT AN UPCOMING WEBINAR THAT'S
RELATED TO OUR COLLABORATION
BETWEEN INSTITUTES.
>> THANK YOU.
THANK YOU FOR THE WORK OVER THE
YEARS AND TO ALL THE PROGRAM
OFFICERS WE REGULAR COMMUNICATE
WITH AT THE NATIONAL INSTITUTE
OF AGING AND JOINT EFFORTS YOU
SEE UNDERWAY.
WE HAVE DIRECT COSTS THAT WERE
ACCEPTED AND OVER THE SIX YEARS
AS DR. HODES SHOWED ON THE SLIDE
IF YOU ADD THAT UP FOR
ALZHEIMER'S DISEASE RELATED
GRANTS AND SUPPLEMENTS IT'S
ABOUT $32 MILLION.
WE'RE EXCITED WITH THE
SUPPLEMENTS AWARD AND FOUND
THERE'S INTERESTING OUTCOMES
THAT ARE ON THEIR WAY OR ALREADY
BEING PUBLISHED AND GRANTS BEING
GENERATED.
WE WERE EXCITED TO INFORM THE
COMMUNITY AND SHARE THE RESULTS
AND PERHAPS FORM MORE
COLLABORATIONS AND FOR US TO
INTERACT TO SEE IF THERE'S OTHER
WAYS TO SUPPORT THIS TYPE OF
RESEARCH.
IN APRIL WE'LL HOLD A WEBINAR
CALLED SHARING OUR SCIENCE ON
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS AND BROADCASTING IT
LIVE TO THE PUBLIC AND MORE
UPCOMING IN THE NEWSLETTER.
THERE'LL BE SCIENCE
PRESENTATIONS AND PANEL
DISCUSSION AND A DISCUSSION AT
LARGE ABOUT HOI TO BETTER
SUPPORT THE AREA.
-- HOW TO BETTER SUPPORT THE
AREA.
THANK YOU.
>> NOW I'LL OPEN IT UP FOR
DISCUSSION AND QUESTIONS.
I'LL WELCOME COUNCIL MEMBERS TO
ASK QUESTIONS OR START A
DISCUSSION.
>> WHILE WE'RE WAITING I'D LIKE
TO THANK AMY FOR THE
PRESENTATION AND THE SLIDE
SHOWING A NUMBER OF PROGRAM
OFFICERS AT NIA INVOLVED.
IT'S ILLUSTRATIVE OF WHAT WE'VE
BEEN DISCUSSING AND THE BREADTH
OF INTEREST FROM CLINICAL
GERIATRICS AND NEURAL SCIENCE
AND BEHAVIORAL RESEARCH SPANNING
THE SPECTRUM OF WHAT WE DO AND
GREAT TO SEE WE'LL HAVE A CHANCE
TO BRING YOUR GRANTEES TOGETHER
AS YOU NOTE IN THE WEBINAR.
THANKS FOR ALL THAT INFORMATION.
>> I REALLY APPRECIATE THE
COLLABORATION AT NIA FOR SEVERAL
YEARS AND I'VE EXPERIENCED IT
PERSONALLY WITH DR. CLAIR FOR
EXTENDING THE REALM AND I KNOW
SEVERAL OF OUR MEMBERS HAVE
TAKEN ADVANTAGE OF THAT.
I THINK IT'S AN EXCELLENT
MECHANISM FOLKS ARE WORKING ON
SO THANK YOU FROM THE FIELD.
>> ANY OTHER COMMENTS OR
QUESTIONS?
RICHARD, I THINK YOU PROVIDED SO
MUCH FOOD FOR THOUGHT I'M SO
ENTHUSIASTIC ABOUT OUR CONTINUED
COLLABORATION WITH YOUR
INSTITUTE.
I CAN'T TELL YOU HOW
APPRECIATIVE WE ARE OF ALL YOU
DO WITH US.
>> THANK YOU FOR THE
PRESENTATION AND APPRECIATE OF
THE INITIATIVES AND IN
COLLABORATION AND I DID GET A
SUPPLEMENT TO EXTEND OUR WORK TO
ALZHEIMER'S DISEASE AND I THINK
THAT'S BEEN SOMETHING WE
WOULDN'T HAVE DONE OTHERWISE.
I REALLY APPRECIATE THAT AND I
HAVE ONE QUESTION FOUR AND THAT
IS CAN YOU ESTIMATE WHEN, IF
EVER, WE WILL HAVE A TRULY
EFFECTIVE DISEASE MODIFYING
MEDICATION FOR ANY OF THE
DEMENTIAS?
>> A HUGE QUESTION.
IN TERMS OF MODIFICATION OR
SLOWING OR REVERSESAL THERE'S ONE
DRUG NOW BEING STUDIED OR
CONSIDERED FOR CMS FOR COVERAGE
AND IT'S AN EXAMPLE OF THE
CHALLENGES WE FACE.
AS WE LEARNED SO MUCH IN THE
BASIC SCIENCE AND INCREASED THE
NUMBER OF CLINICAL TRIALS AND
TARGETS, WHAT HAUNTS ALL OF US
IS WE STILL HAVE NOT REACHED
THAT POINT OF HAVING YET
EFFECTIVE INTERVENTION THE KINDS
YOU DESCRIBE.
WHAT I THINK HAS BECOME CLEAR
OVER THE SPECTRUM OF DEMENTIAS
EVEN THOSE CALLED ALZHEIMER'S
DISEASE BY PLAQUE PATHOLOGIES
ACROSS INDIVIDUALS IF YOU LOOK
AT BRAINS THERE'S A HUGE
CONTRIBUTION IN VARIOUS
PATHOLOGY ONE IS IT'S UNLIKELY
THERE'LL BE A SINGLE
INTERVENTION AFFECTING ALL OF
THEM AND TAILORED WITH
INTERVENTIONS THAT ARE
NECESSARY.
IN TERMS OF WHERE WE STAND IN
HAVING SOMETHING THAT NEEDS THE
STANDARD, WE NOW HAVE A NUMBER
OF CLINICAL TRIALS INCLUDING
THOSE TARGETING AMYLOID AND RISK
FACTORS THAT INCLUDE DIET,
EXERCISE AND COGNITIVE TRAINING
WHICH OVER THE NEXT THREE AND
FOUR YEARS HAVE THE POTENTIAL
AND OUR POWER TO IDENTIFY
SIGNIFICANT IMPACT IF INDEED
THEY ARE SUCCESSFUL.
WE WANT IT KNOW HOW EFFECTIVE
THIS WILL BE UNTIL FURTHER DOWN
THE PIPELINE AND WAYS OF MACHINE
LEARNING AND NETWORK AND THERE'S
A COMBINATION OF HUGE ENTHUSIASM
AND EXCITEMENT AND POTENTIAL
CONTRIBUTING TO THE FRUSTRATION
THAT RIGHT NOW WE DON'T HAVE THE
KIND OF ANSWER YOU'D LIKE AND
HOW LONG IT WILL TAKE.
I CAN SAY OUR INTERVENTIONS THAT
ARE POWERED AND DIFFERENCES
PHARMACOLOGIC OVER THE NEXT TWO
AND THREE AND FOUR YEARS HAVE
THE POTENTIAL TO BE THE FIRST TO
REALLY SHOW SIGNIFICANT AFFECTS
ON PROGRESSION OF SYMPTOMS OR
RISK OF IMPACT AN OF COURSE I
WISH THERE WERE MORE DEFINITIVE
ANSWERS.
WE ALL DO.
>> THANK YOU VERY MUCH.
IT'S VERY HELPFUL.
>> RUTH ANNE.
>> THANK YOU FOR THE INTERESTING
PRESENTATION AND AS OTHERS HAVE
SAID I'M APPRECIATIVE OF THE
COLLABORATION YOU HAVE WITH US
AND WITH OTHER INSTITUTES.
ONE THING HIGHLIGHT FORD ME IN
YOUR TALK IS THE EXTENT AND I
THOUGHT ABOUT THIS OFF AND ON
JUST INCIDENTALLY BUT THE EXTENT
TO WHICH DETERIORATION OF EACH
SENSE SEEMS TO BE A REASONABLE
FORECASTER OF EVENTUAL ACUTE IT
DEMENTIA AND WONDER IF NIA IS
BRINGING TOGETHER THE DIFFERENT
PARTIES AND STAKEHOLDERS TO
COMBINE EFFORTS AND LOOK FOR
GENERAL VERSUS SPECIFIC EFFECTS?
>> I THINK THE ANSWER IS YES AND
I THINK YOU SAW EXAMPLES OF IT
FOR ONE THE RAIKVIC STUDY AND
FOR CENTURY DEFICITS AND
HISTORICALLY IN FACT I'D SAY NIA
HAS HAD RELATIVELY UNIQUE ROLE
IN THIS AREA.
IT'S BEEN IN MULTI-SENSORY
DEFICITS WHERE IF NIDDK OR NEI
ARE FOCUSSING ON THE SENSORY
SYSTEMS THERE WAS A UNIQUE ROLE
AS THEY ALL CHANGE WITH AGING AS
AN OPPORTUNITY TO THEREFORE
CATALYZE OR BE PART OF THE
COLLABORATION AND LOOK AT THE
IMPACT OF MULTI-SENSES.
WHEN WE LOOKED AT LONELINESS OR
ISOLATION AS TWO FACTORS, THE
IMPACTS OF HEARING LOSS AND
VISION LOSS DIFFER ACROSS THOSE.
SO THERE ARE INDIVIDUAL AND
OTHER EFFECTS WHEN YOU LOOK
ACROSS SENSES VERY MUCH NEEDED
AS YOU SUGGEST.
>> I SEE THAT YOU'RE DEFINITELY
WORKING ACROSS INSTITUTES BUT
ARE THERE OTHER INVESTIGATORS AT
THE BASE LEVEL WORK ACROSS
INSTITUTES.
NOT JUST COMING TOGETHER WITH
THE RESULT.
THERE'S A REAL VALUE IN HAVING
THE SAME INVESTIGATORS TRYING TO
INVESTIGATE DIFFERENCES.
>> WOE ISSUED A SOLICITATION FOR
RESPONSES THAT DEALT WITH
MULTI-SENSORY EFFECTS WITH AGING
AND IT WAS THE INTENT TO DO JUST
AS YOU SAID BRINGING TOGETHER
INVESTIGATORS AND TEAMS LOOKING
AT MULTI-SENSORY SYSTEMS FOR
IMPACTS OF AGING.
AS A SAID, SOME YEARS AGO THAT
INITIATIVE WAS LAST ACTIVE AND
PERHAPS WE OUGHT TO GET TOGETHER
TO THINK ABOUT IT ONCE AGAIN.
>> IT MAY BE A GOOD TIME.
THERE'S MORE BASIC SCIENCE
INTEREST.
THANK YOU VERY MUCH.
>> I'M NOT SURE IF THIS IS
POSSIBLE BUT I GOT ONE OF THESE
SUPPLEMENTS AND APPRECIATE IT.
IT WASN'T WONDERFUL WITH THE
PANDEMIC BUT IT SPARK A LOT OF
INTEREST IN OUR GROUP AND MANY
GROUPS AND THE NEXT STEP YOU'RE
GOING INTO AN AREA FOR US IN
CHEMO SENSORY GOING INTO AN AREA
WHERE THAT'S NOT WHAT WE DO
EVERY DAY AND WE'RE IN
COMPETITION WITH PEOPLE DOING
THIS FOR YEARS OR DECADES AND
ALL THE DETAILS OF WHICH MODEL
TO CHOOSE AND SO ON IS A LITTLE
BIT CONCERNING HOW THE OLFACTORY
SYSTEM AND TAO INTERACTS AND
WONDER IF THERE'S A WAY TO DO A
NEXT STAGE FROM THE SUPPLEMENTS
BUT NOT IN A WAY PROTECT US FROM
HAVING TO HAVE THE WHOLE THING
AS AN EXPERT WHO SPENT DECADES
OF THEIR LIFE DOING THIS.
SOME INTERMEDIATE BETWEEN THE
SUPPLEMENTS AND A FULL-BLOWN
RO1.
>> THANK YOU.
WE THOUGHT ABOUT THIS.
WHAT WE IDEALLY WOULD LIKE TO
SEE IS THESE MAY ENTREE TO
INDIVIDUALS BEING ABLE TO MOVE
TO FULL PLEDGED APPLICATIONS
RELEVANT TO ALZHEIMER'S DISEASE
AND TAKE WHAT YOU SAID AS AN
OUTSIDER IN THE FIELD THE
QUESTION IS HOW CAN YOU BE BEST
POSITIONED OR INFORMED OR
PARTNERED IN ORDER TO MAKE THE
MOST OF THAT AND A GREAT NUMBER
OF OUR NEW GRANTEES ARE NEW TO
THE FIELD AND MAYBE WE SHOULD
THINK TO USE OUR PROGRAM
OFFICERS TO HELP PARTNER
INVESTIGATORS WITH THOSE IN THE
FIELD OF ALZHEIMER'S RESEARCH TO
ADDRESS AS YOU'VE SEED WHETHER
IT'S THE RIGHT MODELS IN ANIMAL
MODEL DISEASE OR THE RIGHT
BIOMARKERS TO USE IN STUDIES OF
HUMANS.
I'LL TAKE YOUR COMMENTS AS A
SIGN TO DO MORE THAN JUST
ENCOURAGING PEOPLE TO FOLLOW-UP
AND MAYBE SEE IF WE CAN INFORM
MORE ORGANIZED CONSORTIUM OF OUR
PROGRAM OFFICERS TO HELP DIRECT
THE KIND OF PROGRAMMATIC EFFORTS
I THINK YOU RIGHTLY STRESS WOULD
HELP US TRANSLATE THE INITIAL
ENTREE INTO THE MOST PRODUCTIVE
RESEARCH TRAJECTORIES.
>> GREAT IDEAS.
I THINK WE'RE HOPING THIS
WEBINAR WE HAVE PLANNED FOR
APRIL ARE THE BEGINNING OF NEW
INITIATIVES TO WORK ON TOGETHER.
>> THANK YOU.
>> GREAT TO BE WITH YOU.
>> ALL RIGHT.
SO NEXT ON OUR PROGRAM I'M VERY
EXCITED TO WELCOME OUR OWN
DR. TOM FRIEDMAN ONE OF OUR
INTRAMURAL SCIENTIST AND CHIEF
OF THE LABORATORY OF MOLECULAR
GENETICS IN OUR INTRAMURAL
PROGRAM.
I ASKED TOM TO SHARE HIS
EXCITING RESEARCH ON USHER
SYNDROME AND NON-SYNDROME
DEAFNESS.
>> I'M GOING TELL YOU A STORY
THAT BEGAN IN BERLIN, GERMANY IN
1861.
AND THIS STORY REQUIRES SOME
BACKGROUND INFORMATION THAT'S
IMPORTANT TO UNDERSTAND THE
PAPER THAT WAS RECENTLY
PUBLISHED AND THAT DR. TUCCI
ASKED ME TO PRESENT BETWEEN THE
STAFF AND NIDDK AND PARTNERED
WITH THE UNIVERSITY OF MARYLAND
AND ITS TEAM LEADER ON THE STUDY
AND PROFESSORS ON THIS.
SO FIRST I'LL TELL YOU A LITTLE
BIT ABOUT MY LAB.
MY LAB'S INVOLVED IN STUDYING
HEREDITARY DEAFNESS AND DEAFNESS
SYNDROMES AND WE DO THIS BY
ASCERTAINING FAMILIES ALL OVER
THE WORLD.
AND WE ASCERTAINED FAMILIES IN
BALI AND INDIA AND STILL FOR THE
LAST 20 YEARS HAVE BEEN
ASCERTAINING FAMILIES IN
PAKISTAN AND IN NORTH AMERICA
AND MORE RECENTLY IN NIGERIA.
SO THIS IS A PAPER THAT WAS
RECENTLY PUBLISHED ABOUT THE
NIGERIAN STUDY ANDY GRIFFITH AND
I START ABOUT FOUR YEARS AGO
WITH AN MD IN NIGERIA.
AND A STAFF SCIENTIST FROM NIDCD
BECAME THE SENIOR AUTHOR ON THE
STUDY.
YOU CAN SEE FROM THIS SLIDE,
THESE ARE LITTLE FAMILIES AND
THEY'RE NONE CONSANGUINEOUS AND
IT'S HARD TO FIGURE OUT WHAT THE
POSITIVE VARIANTS ARE.
SO STARTING WITH ABOUT 60
FAMILIES BER ABLE TO IDENTIFY
WHAT WE BELIEVED ARE THE LIKELY
PATHOGENIC VARIANTS IN HALF THE
FAMILIES AND YOU'LL SEE NOVEL
VARIANTS IN PREVIOUSLY REPORTED
DEAFNESS GENES.
AND THERE'S A LOT OF DIFFERENT
GENES.
ONE MY FAVORITE GENE AND THESE
ARE GENES REPORTED ASSOCIATED
WITH DEAFNESS BUT IN THESE
FAMILIES, WE FOUND VARIANTS.
SO WE LOOKED AT THESE CHILDHOOD
DEAFNESS IN NIGERIA AND THAT
WILL MAKE IT SOMEWHAT DIFFICULT
AND EXPENSIVE TO DETERMINE A
MOLECULAR DIAGNOSIS FOR THE
HEARING LOSS IN YOUNG CHILDREN
BECAUSE OF THE LARGE VARIETY OF
GENES IDENTIFIED.
THAT'S GOING TO BE A REAL
CHALLENGE AND I JUST WANT TO ADD
THAT PRESENTLY THERE'S A DATA
DESERT ABOUT THE MUTATIONS AND
GENES ASSOCIATED WITH DEAFNESS
IN THE AFRICAN AMERICANS AND
EXPECT IT WILL SIMILARLY HIGHLY
HETEROGENEOUS.
AND WE'VE HAD THESE LARGE
CONSANGUINEOUS FAMILIES IN WHICH
THE PARENTS ARE FIRST COUSINS
AND BRING RECESSSIVE MUTATION
AND MAKES IT DIFFICULT TO MAP
THE GENE TO A CHROMOSOMAL LOCUS
AND BY EXOME SEQUENCING MAKES IT
EASIER TO IDENTIFY THE MUTANT
VARIANTS ASSOCIATED WITH THE
DEAFNESS WHICH WE THEN STUDY AT
VARIOUS LEVELS AS INDICATED ON
THE LEFT SIDE AND GENERATE
ANIMAL MODELS AND DISCOVER
MOLECULAR PARTNERS AND THINK OF
THERAPIES.
THESE ARE TWO ACTUAL FAMILIES
THAT WERE ASCERTAINED ABOUT 20
YEARS AGO AND THEY WERE PART OF
THE STUDY DONE IN MY LAB WITH A
POST-DOCTORAL FELLOW AND USED TO
MAP THE USHER SYNDROME TO A
NOVEL LOCUS ON CHROMOSOME 10.
AND THAT LOCUS WAS CLOSE TO ONE
ALSO IDENTIFIED ASSOCIATED WITH
USHER SYNDROME WHICH WAS USHER
1D AND THE GENE DFNB23
IDENTIFIED BY A GROUP IN
CLEVELAND.
WHAT'S MOST INTERESTING AND
IMPORTANT IN THIS STUDY WAS
THERE WERE VARIANTS OF THIS GENE
THAT IT CAUSED NOT JUST USHER
SYNDROME BUT CAN CAUSE
NON-SYNDROME OF DEAFNESS AND
THERE'S A VARIANTS AND VARIANTS
THAT CAUSE USHER SYNDROME AND
THIS MEANS A PARTIALLY
FUNCTIONING MUTANT PROTEIN IS
SUFFICIENT TO PRESERVE VISION
WHEN IT IS NOT SUFFICIENT TO
AWHETHER YOU FOR NORMAL HEARING.
-- TO ALLOW FOR NORMAL HEARING.
THAT MEANS THERE'S REASON TO BE
OPTIMISTIC YOU CAN DEVELOP A
THERAPY WHEN EVEN A DEFECTIVE
PROTEIN ARE SUFFICIENT TO
PRESERVE VISION.
SO IT'S ONE OF NINE GENES THAT
IS UNEQUIVOCALLY ASSOCIATED WITH
USHER SYNDROME AND THERE ARE
SERIES OF OTHER GENES SUGGESTED
TO BE ASSOCIATED WITH USHER
SYNDROME.
AND IT'S HETEROGENEOUS AND ALSO
CLINICALLY HETEROGENEOUS AND
DIVIDE BY CLINICIANS AND A
RECENT STUDY AT THE NIDCD INTO
TYPE 1, 2 AND 3 AND ATYPICAL
USHER SYNDROME INDIVIDUALS WHO
DON'T FALL NEATLY INTO THE
CATEGORIES.
AND TYPE 1 IS THE MOST SEVERE
FORM OF USHER SYNDROME.
THE INDIVIDUALS HAVE CONGENITAL
LATERAL PROFOUND DEAFNESS
OPPOSED TO TYPE 2 AND 3 MODERATE
TO SEVERE OR PROGRESSIVE
POST-LINGUAL AND THE VISION
PHENOTYPE HAS AN EARLY ON SET OR
EARLIER ONSET THAN TYPE 2 AND 3
AND CHARACTERIZED BY RETINITIS
PIGMENTOSA LOSS OF THE RETINA
PHOTO RECEPTORS AND RODS AND
CONES AND BLOOD VESSEL
ATTENUATION AND OPTIC DISC
PALLOR AND A LOSS OF THE
VESTIBULAR REFLEXES OPPOSED TO
MORE TYPICAL RESPONSES IN TYPE 2
AND 3.
SO IN 1861 THERE WAS A PAPER
PUBLISHED IN GERMANY AND IN
ENGLISH IT'S DISSENT FROM
MARRIAGES AS A REASON FOR
RETINITIS PIGMENTOSA A JEWISH
POPULATION IN BERLIN AND NOTICED
BY THIS AUTHOR THAT THERE WAS A
CONCENTRATION OF USHER SYNDROME
SEGREGATING THIS TYPE OF JEWISH
POPULATION AND I SUGGESTED TO
FIGURE OUT WHAT THE GENE OR
GENES ARE THAT ARE INVOLVED IN
USHER SYNDROME IN THE ASHKENAZI
JEWISH POPULATION AND DID JUST
THAT.
THE FIRST THING IS TO ASCERTAIN
FAMILIES SEGREGATING USHER
SYNDROME.
THERE ARE FOUR FAMILIES CLEARLY
SEGREGATING THE SYNDROME
FAMILIES 2, 3, 4 AND 5 AND
THERE'S NON-SYNDROMIC DEAFNESS
IN ANOTHER BRANCH AND THESE ARE
TWO YOUNG CHILDREN IN THE THIRD
GENERATION AND THE PARENTS WERE
CONVINCE THE TWO YOUNG CHILDREN
DID NOT HAVE WHAT THEIR
RELATIVES HAVE WAS NON-SYNDROMIC
DEAFNESS.
HOWEVER, THEY ARE ALL
SEGREGATING MUTATION, COMMON
MUTATION IN THIS CODON THAT
USUALLY CODES FOR ARGENINE AND
THE MUTANT ALLELE WOULD TRUNCATE
A LARGE PROTEIN EARLY ON AND
THERE'S PROBABLY NO PROTEIN MADE
AT ALL ESPECIALLY WHEN THEY'RE
HOMOZYGOUS AND THE MOUSE PROTEIN
AND THE HUMAN ARE VERY VERY
SIMILAR.
AND THE CARRIER FREQUENCY HAS A
VARIATION IN FREQUENCY AND THESE
ARE INDIVIDUALS WITH ONE MUTANT
ALL-LE
ALLELE AND ONE WILD TYPE BUT
CARRYING THE VARIANT AND THAT'S
A HIGH CARRIER FREQUENCY.
IT'S NOT FOUND IN OTHER JEWISH
POPULATIONS.
SO HOW DO YOU END UP WITH A HIGH
FREQUENCY OF A PARTICULAR
MUTATION A FOUNDER MUTATION?
A HIGH CARRIER RATE CAN RESULT
FROM SELECTIVE ADVANTAGE OF THAT
MUTATION BUT YOU CAN'T ADVANTAGE
THERE'S A SELECT ADVANTAGE TO
BEING DEAF AND LOSING YOUR
VISION OR A HIGH MUTATION RATE I
DOUBT THAT OR A POPULATION
BOTTLE NECK AND THERE'S BEEN
MIGRATION AND GREAT LOSS OF LIFE
AND IN A SCIENTIFIC AMERICAN
ARTICLE, MY FORMER COLLEAGUE
HERE SAID AND I'LL QUOTE IT
BECAUSE I LIKE THE PHRASE IN THE
PAPER, EVERYONE WITH A FOUNDER
MUTATION HAS A COMMON ANCESTOR,
THE FOUNDER, IN WHOM THE
MUTATION FIRST APPEARED.
THAT'S NOT THE ONLY MUTATION
THAT CAUSE THE FOUNDER TRAIT AND
MY LAB IDENTIFIED A VARIANT OF A
GENE CALLED GJB2 THAT ENCODES A
GAP JUNCTION AND BASICALLY
THAT'S A PORTAL BETWEEN TWO
CELLS FOR SMALL MOLECULES.
SO SMALL MOLECULES CAN MOVE BACK
AND FORTH BETWEEN CELLS AND PASS
THROUGH THE GAP JUNCTIONS AND
THE 167DELT AND THE CARRIER
FREQUENCY IS EVEN HIGHER FOR 4%
AND DIDN'T FIND IT IN ANY OTHER
POPULATIONS WE STUDIED.
SO ANOTHER STUDY WAS TO FIND
YOUNG CHILDREN UNDER AGE OF 10
DIAGNOSED WITH NON-SYNDROMIC
DEAFNESS AND ASSUMED TO BE
NON-SYNDROMIC DEAFNESS.
WE IDENTIFIED 20 SUCH
INDIVIDUALS, 20 CHILDREN LIKE
THAT AND PREDICTED SOME WOULD BE
HOMO ZYGOUS AND 2 OF THE 20 WERE
AND WOULD LOSE THEIR VISION OVER
TIME.
THAT BRINGS ME TO A BRIEF
DISCUSSION OF THIS PAPER THAT
APPEARED IN NOVEMBER 2021.
AND IN OUR INSTITUTE THERE WAS A
POST-DOC IN MY LAB ANDY GRIFFITH
AND CARMEN BREWER AND MYSELF AND
AT THE UNIVERSITY OF MARYLAND
THE LEAD AND THEIR POST-DOC.
YOU'LL SEE THE NEI HAD FOR
DECADES FOR OVER 30 YEARS HAD
BEEN STUDYING USHER PATIENTS.
AND MANY OF THEM A LARGE NUMBER.
AND WE WENT THROUGH THE
INDIVIDUALS AND TRIED TO
DETERMINE WHAT THE EXPLANATION
WAS FOR THE LOSS OF VISION AND
IDENTIFIED 13 INDIVIDUALS WITH A
MUTATION.
AND 11 OF THEM WERE HOMOZYGOUS
AND TWO HAD ANOTHER MUTANT
ALLELE SIMILARLY DISABLING AND
DAMAGING TO THE PROTEIN.
WE LOOKED AT THE VISUAL FIELD
THAT WOULD BE DETECTED BY THESE
INDIVIDUALS AND I'M SURE IF
YOU'VE GONE TO AN
OPHTHALMOLOGIST YOU'VE HAD A
VISUAL FIELD TEST WHERE THE
LIGHTS BLINK IN THE VISUAL FIELD
AND SOME ARE DIM AND LIGHT AND
YOU PRESS A BUTTON IF YOU SEE
IT.
WHAT IS NOTED HERE IS THAT
INDIVIDUALS WITH TWO MUTANT
ALLELES OF THIS THAT ARE
DAMAGING TO THE PROTEIN AND
AGAIN 11 ARE HOMEEE --
HOMOZYGOUS AND THE THERE'S
SIGNIFICANT VISION IN THE
BEGINNING BUT THEN A RAPID
DECLINE IN VISION.
THESE ARE THE RETINAS FROM SOME
OF THESE INDIVIDUALS A
19-YEAR-OLD AND 50-YEAR-OLD AND
YOU CAN SEE THE DAMAGE THAT'S
OCCURRED AND THE COMPARISON TO A
WILD TYPE RETINA.
THE PIGMENT AND THE ATTENUATED
VESSELS.
WE SET OUT TO LOOK AT THIS IN A
MOUSE AND THERE WERE THOUSANDS
OF ALLELES ALREADY STUDIED AND
THEY WERE CALLED AMES WALTZER
THAT WAS THE NAME GIVEN TO THEM
BEFORE WE KNEW THE MUTATION AND
IT WAS A GROUP AND MY GROUP THAT
REPORTED ON THE PHENOTYPE OF
THESE AVAILABLE MUTANT ALLELES
BUT WE WANTED EXACTLY THE SAME
MUTATION TO STUDY IN A MOUSE
MODEL.
SO WHAT'S SHOWN HERE IS A
SCHEMATIC OF AN ELECTRORETINO
ELECTRORETINOGRAM THAT'S A
RESPECTIVE RESPONSE OF THE RODS
AND CONES LIGHT RESPONSE AND
WHAT WE FOUND IN THIS HOMOZYGOUS
MOUSE THERE'S A DIMINUTION IN
THE SIGNAL.
IN THE FIRST COLUMN WE LOOKED AT
MICE ONE-MONTH-OLD HOMOZYGOUS
FOR THE MUTATION AND WILD TYPE
OR HETEROZYGOUS AND HAVE NORMAL
VISION AND NORMAL HEARING AND AT
2 AND 3 MONTHS AND IN RED ARE
THE HOMOZYGOUS MUTANTS AND IN
BLACK THE HOMOZYGOUS WILD TYPE
INDIVIDUALS WHO HAVE NORMAL
HEARING.
AND THERE'S PHOTOPIC AND THERE'S
A SIGNIFICANT DIMINUTION OF THE
AMPLITUDE IN MICROVOLTS IN THE
MOUSE EVEN AT ONE MONTH AND AT
TWO TO THREE MONTHS AND
ADDITIONAL DATA IN THE PAPER AT
SIX MONTHS AND SOME AT A YEAR.
SO, THAT MEANS A LOSS OF 15
PROTEIN DUE TO HOMO ZYGOCITY
LEADS TO DYSFUNCTION.
DR. AHMED LOOKED AT THE ROD
OUTER SEGMENT INVOLVED IN THE
VISUAL RETINOID CYCLE AND
TRANSDUCENT AND WHEN THE ANIMAL
ANIMAL'S LIGHT ADAPTED BUT IN
THE MUTANT MOUSE THE ARRESTED
AND TRANSDUCENT WERE IN THE
INNER SEGMENT AND OUTER SEGMENT.
TRANSDUCENT IS IN BOTH SEGMENTS
AND NOT SO IN THE WILD TYPE.
THAT MEANS THEY'RE MISLOCALIZED
WHEN THIS IS ACCEPT.
-- ABSENT.
WHAT I HAVEN'T SHOWN IS THE DATA
FROM MICHAEL REDMAN'S LAB THESE
MICE HAVE REDUCED LEVELS OF THE
ENDOGENOUS NATIONALLY OCCURRING
RETINALE TO FORM REDOXIN IN THE
PHOTO TRANSDUCTION CASCADE ON
THE TIME SCALE.
BECAUSE THERE WAS A DEFICIENCY
THE HYPOTHESIS WAS THAT PERHAPS
NINE CIS RETINAL ANALOG
AVAILABLE WILL IMPROVE THE ERG
MAGNITUDE OF THE HOMOZYGOUS
R250X MUTANT MOUSE AND IF SO
MAYBE IT WOULD WORK IN HUMANS.
YOU CAN SEE THE DIMINUTION AND
ONE WEEK LATER THERE WAS A
SINGLE INTERJECTION OF A
QUARTERLY OF A MILLIGRAM OF THE
RETINAL INJECTED INTO THE MOUSE
AND THEN 24 HOURS LATER THE ERGs
WERE MEASURES AND THEY'RE VERY
SIMILAR TO THE WILD TYPE AND
WHEN THAT'S QUANTIFIED, THE
HOMOZYGOUS MUTANT INJECTED IN
PURPLE IS VERY SIMILAR IN
MAGNITUDE TO THE WILD TYPE
INJECTED CONTROLS AND DIFFERENT
FROM THE BASELINE.
SO CLOSING THOUGHTS.
I HOPE THIS HAS SHOWED THE LONG
ARC OF SCIENCE WHICH I THAT'D
PRIVILEGE OF PURSUING IN THE
PROGRAM AND IT'S NOT BEEN LOST
ON ME IT'S GOING TO TAKE A LONG
TIME TO SEE IF THESE RETINOID
COMPOUNDS MAY BE EFFECTING.
THE IDENTIFICATION OF THE
GENETIC CAUSES AND WILD TYPE
MECHANISMS AND PATHOPHYSIOLOGY
OF INHERITED DISORDERS IN
COMBINATION WITH ANIMAL MODELS
MAY REVEAL BENEFICIAL
INTERVENTIONS.
WHAT I TOLD YOU ABOUT MAY BE
ONE.
IN THE R245X VARIANT IS
EQUIVALENT TO MOUSE R250X BUT A
MOUSE RETINA IS NOT A HUMAN
RETINA AND A TRIAL OF THE
COMPOUNDS TO REDUCE VISION LOSS
IN SUBJECTS AND MAYBE OTHER
USHER SUBJECTS MAY TAKE YEARS TO
DETERMINE THE PHARMACO
RESPONSIVENESS.
I HOPE I'VE GIVEN YOU A FLAVOR
FOR THAT PAPER AND FOR THE
RESEARCH IN MY LAB AND I'M HAPPY
TO ANSWER ANY QUESTIONS YOU
MIGHT HAVE.
THANK YOU, TOM 37 -- THANK YOU,
TOM.
>> CAN YOU ELABORATE HOW THE
MOLECULE AFFECTS -- I THINK
YOU'VE BEEN INSTRUMENTAL IN OUR
UNDERSTANDING OF WHAT IT DOES IN
THE COCHLEA BUT ELABORATE ON
COMMONALITIES WITH THE RETINA.
>> THERE'S' TERRIFIC QUESTION
AND IT'S ONE OF TWO PROTEINS
THAT MAKE UP THE CELLS THAT GATE
THE TRANSDUCTION CHANNEL.
WE KNOW WHAT IT DOES IN THE
AUDITORY SYSTEM.
WE STILL DON'T FULLY UNDERSTAND
THE FUNCTION IN THE RETINA AND
THERE'S PAPERS WE DON'T FULLY
UNDERSTAND THE FUNCTION.
IT'S A PROJECT ONGOING AND MANY
WORKING ON THIS INCLUDING
ANOTHER LAB.
I CAN'T GIVE YOU A GOOD ANSWER
TO THAT QUESTION.
THE OTHER THING THAT'S
PERPLEXING ABOUT THIS IS THAT IT
ALMOST EVERY SINGLE ONE OF ITS
MANY MANY AXONS ARE
ALTERNATIVELY SPLICED AND
THERE'S A HUGE NUMBER OF THE ISO
FORMS IN THE PROTEIN AND EACH
MAY BE DOING SOMETHING A LITTLE
DIFFERENT.
MOREOVER, THERE'S A -- SO IT'S A
TRANS MEMBRANE PROTEIN.
MOST IS OUTSIDE THE CELL AND
THERE'S SOME OF IT WHEN I SIDE
THE CELL AND THERE'S THREE
CYTOPLASMIC DOMAINS AND NO ONE
IS WORKING ON THIS THERE'S A
SECRETED FORM OF THE PROTEIN
WHICH WE REPORTED PROBABLY 10
YEARS AGO.
I THINK IT'S GOING TO BE A LONG
TIME BEFORE WE FULLY UNDERSTAND
THE FUNCTIONS OF THIS.
>> DO YOU THINK THAT EXPLAINS
THE PROGRESSIVE NATURE THAT
COULD BE DIFFERENT ISOFORMS AT
DIFFERENT TIMES AND AFFECTING
THE TWO SENSORY SYSTEMS?
>> IT'S A POSSIBILITY.
THE REASON WE MADE THE MOUSE IS
IT'S ONE AXON IN ALMOST EVERY
ONE OF THE ISOFORMS AND SO IT'S
REALLY AN ALLELE AND OTHERS
AREN'T PERHAPS NECESSARY IN THE
EYE.
IT'S A LITTLE MORE COMPLICATED
THAN SAYING A DAMAGED PROTEIN
THAT FUNCTIONS IN THE RETINA.
THAT'S AN OVER SIMPLIFICATION.
>> LIKE DYSTROPHIN.
>> THAT'S A WHOLE OTHER STORY
AND THANK YOU FOR BRINGING IT
UP.
>> THANK YOU.
>> I WOULD TAKE A GENETIC COURSE
AT MICHIGAN STATE AS A FRESHMAN.
40 YEARS BETWEEN THAT TIME AND
NOW.
YOUR LAST COMMENT ABOUT HOW
SEEING THE PHARMACO OR GENE
THERAPY.
I FEEL THE SAME THING MAY BE BE
APPLIED TO AGE RELATED HEARING
LOSS AND YOUR THOUGHTS OF THE
HEARING ASPECT AND INTERVENTION
FOR HEARING IMPAIRMENT.
COCHLEAR IMPLANTS WORK FOR
ALMOST ALL THE INDIVIDUALS WITH
SEARCH GENES AND WITH TYPE 1 YOU
HAVE TO INTERVENE EARLY BEFORE
THERE'S A LOSS OF HAIR CELLS.
IT'S A GOOD QUESTION AND I DON'T
HAVE GREAT ANSWERS BUT WE'RE
REFORMING THE USHER GROUP AT NIH
AND THE FIRST ISSUE'S GOING TO
BE HOW TO INITIATE A CLINICAL
TRIAL.
I SUPPOSE WE OUGHT TO BE
THINKING ABOUT SINCE IT'S AN
NIDC/NEI GROUP WE OUGHT TO BE
THINKING ABOUT THE HEARING AS
WELL AS THE VISION.
I HOPE I'M AROUND TO FIND
WHETHER ANY OF THE INTERVENTIONS
WORK AND SURELY COCHLEAR
IMPLANTS WORK AND THAT'S BEEN
AROUND MANY YEARS IN MANY
PATIENTS.
>> ALL RIGHT.
TOM, THANK YOU SO MUCH.
I REALLY APPRECIATE THE EXCITING
PRESENTATION.
SO WE'LL GO TO A SHORT BREAK.
DON'T GET OFF THE ZOOM LINK BUT
MUTE AND TURN OFF YOUR CAMERAS
AND SEE YOU AT 2:30.
>> HOPEFULLY EVERYBODY IS BACK
FROM THE SHORT BREAK AND WE'LL
AN UPDATE WITH OUR PLANNING
BRANCH AND COUNCIL MEMBERS
REPRESENTING COUNCIL IN THIS
EFFORT, DR. CHAUDHARI AND SANES.
>> CAN YOU HEAR ME ALL RIGHT?
>> YES.
>> THANK YOU.
I'M PLEASED TO BE WITH YOU TO
UPDATE YOU ON THE STRATEGIC
PLANNING PROCESS.
SPECIFICALLY ABOUT OUR IDEA
GENERATION MEETING AND WE'LL GET
THOUGHTS ON HOW THINGS WENT.
>> I WANT TO TALK GOOD THE
STRATEGIC PLAN AND THE PLANNED
NEXT STEPS.
SO THE PURPOSE OF THE NIDCD
STRATEGIC PLAN TO REMIND US ALL
SO WE'RE ON THE SAME PAGE, WHAT
IS THE PLAN AND IDENTIFY AREAS
OF OPPORTUNITIES AND GAPS WE
NEED TO FILL TO MOVE OUR MISSION
FORWARD AND NEED TO IDENTIFY TOP
PRIORITIES FOR THE FUTURE.
AS WITH YOU NOE WE'VE BEEN USING
A COLLABORATIVE APPROACH AND
BEGIN TO SYNTHESIZE THE CROWD
SOURCE AND LINK THEM TO THE
MISSION AND VISION ON THE SLIDE.
BEFORE I MOVE WITH THE TIME LINE
I WANT TO EMPHASIZE THE
STRATEGIC PLAN WILL ADDRESS
ADDITIONAL IMPORTANT EFFORTS
HAPPENING AT THE INSTITUTE
INCLUDING ON DIVERSITY, EQUITY
AND INCLUSION IN THE SCIENTIFIC
WORKFORCE WORKFORCE YOU'LL HEAR
ABOUT TOMORROW AND RESEARCH
TRAINING WE'LL TOUCH ON RESEARCH
TRAINING, WOMEN'S HEALTH,
MINORITY HEALTH AND HEALTH
DISPARITIES IN THE STRATEGIC
PLAN.
WE'LL BE SURE TO HIGHLIGHT WHAT
THE INSTITUTE IS DOING IN THOSE
AREAS.
YOU SAW THIS HIGH LEVEL TIME
LINE EARLIER.
WE'LL END WITH THE STRATEGIC
PLAN AND A WANT TO STOP AND
ACKNOWLEDGE HOW WE GOT HERE AND
THE PANDEMIC'S INFLUENCE ON THIS
STRATEGIC PLANNING PROCESS.
IT STARTED WITH A GENERATION OF
MEETINGS DISCUSSING IDEAS OVER
MEALS AND IN THE FORMAL PARTS OF
THE MEETING AND DELAYED AND
HOPED TO HOLD IN IT PERSON BUT
EVENTUALLY ENDED UP MOVING
FORWARD VIRTUALLY.
THE FORMAT OF THE IDEA
GENERATION IN DECEMBER WAS
DESIGNED FOR AN IN-PERSON
EXPERIENCE AND WE ADAPTED IT TO
USE TECHNOLOGY TO HANDLE IT
VIRTUALLY INSTEAD.
THOUGH WE HAD TO ADAPT WE GOT
GOOD IDEAS IN JULY AND IN
DECEMBER AND WE VALUE THEM.
I WANTED TO SHARE THAT WITH YOU
AND AFTER WE KICKED OFF THE
MEETING I WANT TO SHARE IDEAS
ABOUT THE IDEA MEETING PROCESS
AND TALK ABOUT NEXT STEPS.
THE APPROACH WE PUT EVERYONE
TOGETHER IN A VIRTUAL ROOM TO
HEAR THE OIFBJECTIVES AND RULES
FOR PARTICIPATING AND OPEN THE
QUEUE FOR SUBJECT MATTER EXPERTS
TO.
I PITCH THEIR IDEAS.
NEXT WE HAD THE MARKETPLACE
IDEAS OF IDEAS WHERE SUBJECT
MATTER EXPERTS SPOKE ABOUT IT IN
THE BREAKOUT SESSION.
IN THE AFTERNOON ON DAY ONE WE
PITCHED THE IDEAS INTO 30
BREAKOUT SESSIONS.
I'LL TALK MORE ABOUT DAY 2 IN A
BIT.
BEHIND THE SCENES ON DAY ONE,
NIDCD STAFF LOOKED AT ALL THE
IDEAS AND WORKED TO PROGRAM THEM
INTO BREAKOUT SESSIONS AROUND
SELECTED IDEAS FOR FURTHER
DISCUSSION AND IN SOL -- INPUT
SOME IN TWO SESSIONS.
WE ENCOURAGED THE SUBJECT MATTER
EXPERTS TO GO TO THE BREAKOUT
SESSIONS THAT INTERESTED THEM
AND HOPED TO GET BROAD EXPERTISE
FROM ACROSS THE MISSION AREAS
AND ADD NEW PERSPECTIVES.
WE FOCUSSED THOSE NOT ALREADY
ADDRESSED IN AN ONGOING EFFORT.
I WON'T READ EVERY ITEM BUT IT'S
JUST TO GIVE YOU AN I'D ANDSHARE
HOW WE CONDUCTED DAY DAY 2.
WE HAD FIVE BREAKOUT ROOMS, A,
B, C, D AND E AND HELD SIX
ROUNDS OF VIRTUAL BREAKOUT ROOM
DISCUSSIONS IN THOSE ROOMS THREE
IN THE MORNING AND THREE IN THE
AFTERNOON.
BASED ON THE FEEDBACK WE'VE
GOTTEN FROM PEOPLE WE HEARD FROM
WHO ATTENDED AND FROM OUR OWN
ATTENDANCE AT THE BREAKOUT
SESSIONS WE UNDERSTAND EACH OF
THESE ROOMS WERE THEIR OWN
UNIQUE EXPERIENCE.
NEXT WE'LL HEAR FROM NIRUPA AND
DAN SHARING THEIR IMPRESSIONS
ABOUT SELECT BREAKOUTS THEY
ATTENDED.
NIRUPA, I'LL ASK TO YOU SPEAK
NEXT.
THANK YOU.
>> THANK YOU, LAURA.
THIS WAS A UNIQUE EXPERIENCE, I
HAVE TO SAY.
I'LL GIVE YOU A FLAVOR OF TWO
SESSIONS.
I ATTENDED SIX.
ONE OF THESE WAS IN THE AREA OF
NIDCD.
THE QUESTION WAS WE TALKED ABOUT
HOW TASTE GUIDES EVERYTHING AND
BEHAVIOR BUT WE DON'T HAVE A
GOOD CONTINUOUS UNDERSTANDING OF
WHAT THAT MEANS.
THE NEURONAL TYPES AND BRAIN
CIRCUITS AND BEHAVIORS THE MET
-- THE METABOLIC OUTCOMES AND
HOW IT CHANGES WITH METABOLISM
OUTCOMES AND ACROSS THE NORMAL
LIFE SPAN AND NORMAL AGING.
THIS WAS A WONDERFUL FREE FOR
ALL WITH A LOT OF IDEAS HOW
NUTRITIONAL STATES INFLUENCE
THINGS AND PERHAPS HOW DOES THE
TASTE SYSTEM INFLUENCE
NUTRITIONAL DECISIONS.
WHICH OF COURSE, INTERN AFFECTS
METABOLISM BUT IN CONVERSE, HOW
DOES WHAT YOU EAT AFFECT YOUR
TASTE SENSITIVITIES,
PERCEPTIONS, ALL THESE THINGS.
THERE WAS HIGH ENTHUSIASM FOR
PEOPLE TO LOOK AT THE NEURAL
IMPACT AND NOT LOOKED AT IN ANY
INTEGRATED WAY AND THE OTHER WAS
ON THE SENSORY AREAS THE NIDCD
MISSION AREA OLFACTION WHICH HAS
RECEIVED ENTHUSIASTIC INTEREST
OF LATE WITH COVID-RELATED
SYMPTOMS TO LAY OUT WHAT THE
MATRIX OF SYMPTOMS ARE AND LOOK
AT THE VARIOUS ETIOLOGIES
WHETHER THEY'RE VIRAL OR AGING
OR TRAUMA OR IDIOPATHIC ALL
THOSE THINGS AND ALSO LOOK AT
THE TISSUE ORIGINS OF THESE
THINGS WHETHER THEY'RE
EPITHELIAL OR INFLAMMATORY OR
NEURODEGENERATIVE AND INTEGRATE
THESE INTO 10 POTENTIAL
THERAPIES WAS ONE OF THE HIGH
LEVEL GOALS AND TRAININGS AND
THERAPIES AND EXISTING COURSES.
THERE WAS A LOT OF ENTHUSIASM I
HEARD FROM P.I.s ABOUT SOME OF
THESE AREAS OF OPPORTUNITY
THAT -- I MEAN, THERE WAS
ENTHUSIASM FOR NIDCD PROMOTING
THE AREAS OF OPPORTUNITY AND
INITIATIVES BROUGHT IN LIKE THE
R25s TO SUPPORT ONGOING RESEARCH
BY PHYSICIAN SCIENTISTS.
THAT WAS VERY VERY
ENTHUSIASTICALLY RECEIVED.
AND ALSO THE CONFERENCES AND
WORKSHOPS AND I WAS EXCITED TO
HEAR THE DISCUSSION EARLIER
TODAY WORKSHOP TO BRING TOGETHER
GRANT RECIPIENTS IN
INTERSECTIONAL AREAS AND THINGS
PERHAPS NOT YET PUBLISHED AND
THINGS TO ENHANCE THOSE
INTERSECTIONAL INTERACTIONS.
SO THOSE WERE SOME OF THE MAIN
POINTS I TOOK FROM THE TWO
BREAKOUT SESSIONS.
>> THANK YOU.
NOW DAN WILL SHARE HIS THOUGHTS.
>> I HAD A GREAT TIME AT THIS.
I APPLAUD THE PROGRAM STAFF FOR
FIGURING OUT A WAY TO PUT
TOGETHER AN IMAGINATIVE
INTERACTION FROM PEOPLE ALL OVER
THE UNITED STATES.
THERE WERE REAL ADVANTAGES
PERHAPS SOME OVER A LIVE
MEETING.
ONE OF THEM WAS THE IDEA THAT WE
COULD LISTEN TO EACH OTHER
PRESENT INDIVIDUALLY BIG IDEAS
IN THE FIRST DAY AND THEN HAVE
OVERNIGHT TO CONSOLE DATE WHILE
THE PROGRAM STAFF PUT EVERYTHING
TOGETHER AND PROGRAMMED IT FOR
US, A MINOR MIRACLE TO TAKE 50
IDEAS AND PUT IT INTO DIFFERENT
BOX.
THAT WELL CAN BE AN AVERAGE EVEN
IF WE WERE ALLOWED TO MEET LIVE
TO HAVE ONE OF THESE THINGS.
THE NEXT DAY, UN LIKE NIRUPA I
ATTENDED ONE CALLED THE
DEVELOPMENT OF TREATMENT
STRATEGIES TO TARGET CENTRAL
VESTIBULAR SYSTEM.
I DON'T WORK IN THE VESTIBULAR
SYSTEM BUT AS SOMEONE WHO WORKS
ON THE CENTRAL AUDITORY SYSTEM I
WAS INTERESTED HOW THESE GUYS
WERE THINKING WHAT A TARGET
MEANS.
WHAT DO YOU MEAN BY A TARGET?
IS IT A SYNAPTIC AREA OR AREA OF
THE BRAIN AND SO FORTH AND HOW
MIGHT THESE THINGS IMPACT THE
BEHAVIORAL DEFICITS THAT OCCUR
WITH VESTIBULAR DISORDERS.
I PARTICIPATED AS SOMEBODY MORE
ASKING QUESTIONS THAN OFFERING
IDEAS AND IT WILL BE INTERESTING
HOW IT TURNS OUT IN THE LONG RUN
AND IN THE AFTERNOON I WENT TO
ONE THAT CONSIDERED ADDING
COMMUNICATION PHENOTYPES TO
LARGE SCALE EPIDEMIOLOGICAL
COHORTS INCLUDING LIKE ANOTHER N
HANES STUDY AND I WORK ON THE
DEFICITS THAT OCCUR AFTER
HEARING LOSS AND PUSHED WE HAVE
TO INCLUDE LONGITUDINAL STUDIES
WHEN WE TALK ABOUT THESE THINGS
THOSE PROVIDE THE LONGEST
LONG-TERM BENEFIT FOR THOSE
CONSTRUCTING ANIMAL MODELS AND
WANT TO KNOW WHAT WE'RE
MODELLING AND WHAT HAPPENS TO
HUMANS IN THE LONG HAUL.
IT WAS A VERY ENGAGING
DISCUSSION, ONCE AGAIN, AND
LOOKING FORWARD A FEW OTHER
ITERATIONS IN WHICH WE BROADLY,
THE COMMUNITY HAVE INPUT INTO
THIS PROCESS.
AND SO I WOULD THINK OF VALUE
ADD THE AREAS BEING WELL DEFINED
AND AS WE THINK ABOUT THEM IN
THE FUTURE WE WANT TO BROADEN
THEM AS MUCH AS POSSIBLE.
THAT'S MY TAKE.
I WAS WE PLEASED BY THE WHOLE
EFFORT.
CONGRATULATIONS, PROGRAM STAFF.
>> THANK YOU.
I'LL MOVE FORWARD TO WHERE WE'RE
GOING NEXT.
IN MARCH OUR STAFF IS GOING TO
BEGIN FINALIZING OUR LIST OF TOP
PRIORITIES BECAUSE EVEN THOUGH
WE HAVE GREAT IDEAS, WE CAN'T DO
EVERYTHING ALL AT ONCE TO MAKE
THE STRATEGIC PLAN ACTUALLY
STRATEGIC AND USEFUL FOR THE
INSTITUTE WE NEED TO IDENTIFY
OUR TOP PRIORITIES FOR NOW.
ONCE WE FINALIZE OUR TOP
PRIORITIES WE'LL DEVELOP THE
FIRST DRAFT OF OUR STRATEGIC
PLAN AND GET THAT READY TO POST
FOR PUBLIC COMMENT IN MAY OF
2021.
THAT WILL BE ANOTHER OPPORTUNITY
FOR THE PUBLIC AND OF COURSE
COUNCIL TO COMMENT ON THE DRAFT
PLAN TO GIVE US YOUR FEEDBACK.
TO GIVE YOU MORE DETAILS WE'LL
NARROW DOWN THE LIST OF TOP
IDEAS AND IDEAS ARE NOT ALWAYS
GREAT AS STRATEGIC GOALS SO
WE'RE GOING TAKE THOSE GREAT
IDEAS AND DEVELOP THEM INTO
STRATEGIC GOALS THAT ARE
APPROPRIATE FOR A STRATEGIC
PLAN.
THEN WE'RE GOING TO BE GROUPING
SIMILAR IDEAS INTO THEMES TO
HAVE A WAY TO TALK ABOUT WHAT
WE'RE DOING AND IDENTIFY THEMES
FOR MESSAGING ABOUT OUR
STRATEGIC PLAN.
AND WE'RE ALSO GOING TO BE THIS
WHOLE TIME LOOKING FOR GAP
AREAS.
AREAS WHERE WE BELIEVE THERE'S
AN OPPORTUNITY TO MOVE FORWARD.
SOMETHING THAT SHOULD BE
ADDRESSED WHERE WE DON'T HAVE
ANYTHING YET INCLUDED IN THE
PLAN AND IDENTIFY THE GAP AREAS.
AS I SAID, FINALLY, POST THE
DRAFT PLAN.
WE HOPE THE COUNCIL WILL REVIEW
THE DRAFT PLAN WHEN WE POST IT
AND WELCOME INPUT FROM THE
COUNCIL ON THE DRAFT PLAN AND
ABOUT GAP AREAS AS WELL.
FINALLY, WE WELCOME QUESTIONS.
WE WELCOME YOU TO ASK QUESTIONS
NOW AT THIS SESSION OR YOU CAN
SEND THEM TO ME OR TO DAN AND
NIRUPA.
OUR CONTACT INFORMATION IS ON
THE SLIDE AS WELL AS AN NIDCD
STRATEGIC PLAN MAILBOX.
WE MONITOR THAT AS WELL.
I GUESS NOW I'LL WELCOME ANY
COMMENTS PEOPLE HAVE ON THE
STRATEGIC PLAN.
>> I WANT TO CONNECTICGRATULATE YOU
AND THE STAFF AND WE WORRIED
WHEN IT WAS VIRTUAL IT WOULDN'T
BE AS DYNAMIC AND ENGAGING BUT
THE SESSIONS I LISTENED TO WERE
VERY ENGAGING AND EXCITING.
I THINK YOU ACHIEVED THE GOALS
WE WERE AFTER.
ANY DISCUSSION OR QUESTIONS?
WE'D LOVE TO HEAR YOUR THOUGHTS
ON THIS.
>> IT SOUNDS LIKE YOU'VE DONE A
GREAT JOB AT GETTING THE MOST
IMPACTFUL THOUGHTS ELICITED AND
CONGRATULATIONS ON PULLING OFF
IN A CHALLENGING ENVIRONMENT
LIKE THE REMOTE ENVIRONMENT.
>> THANK YOU FOR THAT.
THANKS ALSO, DR. TUCCI ABOUT THE
PROCESS.
WE'RE LOOKING FORWARD TO SEEING
WHAT WE CAN DO WITH THESE GREAT
IDEAS.
>> IN YOU SAY MORE ABOUT THE
TIME LINE AND WHEN WE'LL SEE THE
PRODUCT IN COUNCIL AND ISSUE FOR
?
>> OUR GOAL IS TO GET THINGS
NARROWED DOWN TO IDENTIFY THE
TOP PRIORITIES AND WORK ON A
DRAFT THAT WE CAN POSE FOR
PUBLIC COMMENT FOR A 30-DAY
PERIOD IN MAY AND WE HOPE THAT
WE WILL BE ABLE TO TELL YOU
WHERE WE ARE WITH THAT PROCESS
AT THE NEXT COUNCIL MEETING AND
SINCE WE'RE TRYING TO KEEP
COUNCIL INVOLVED IN THIS
PROCESS, WE WELCOME YOUR
FEEDBACK AT ANY TIME ABOUT WHAT
YOU HEARD AND ENCOURAGE FOR
COMMENT ON THE DRAFT PLAN.
WE'LL BE LISTING IT AND WE'LL
HAVE A REQUEST FOR INFORMATION.
WE WILL HAVE A WEBSITE AND WE
WILL WELCOME ALL THE FEEDBACK
FROM THE PUBLIC THAT WAY.
DID THAT ANSWER YOUR QUESTION?
>> YEP, VERY GOOD.
SO THE GOAL IS TO HAVE A FINAL
PRODUCT BY THE END OF THE YEAR.
>> THAT'S THE DEAL.
-- THE GOAL.
I'M NOT SEEING A LOT OF
QUESTIONS SO THANK YOU FOR THE
TIME TO PRESENT AND THANKS FOR
DAN AND NIRUPA FOR SHARING THEIR
PERSPECTIVE AND FEEL FREE TO
FOLLOW-UP WITH AN E-MAIL IF YOU
HAVE QUESTIONS.
THANK YOU.
>> THANK YOU, LAURA AND NIRUPA
AND DAN.
NEXT WE HAVE DR. MARIE BERNARD
AND WE'RE RUNNING A LITTLE BIT
OF AHEAD OF SCHEDULE.
DO YOU KNOW IF DR. BERNARD IS ON
>> SHE'S HERE.
>> OH, GOOD, FANTASTIC.
MARIE, I'LL GIVE A BRIEF
INTRODUCTION.
WE APPRECIATE YOU BEING HERE AND
SERVES AS THE CHIEF OFFICER FOR
SCIENTIFIC WORKFORCE DIFFERENCE
TI AND LEADS THE NIH'S EFFORTS
TO PROMOTE DIVERSITY,
INCLUSIVENESS AND EQUITY
THROUGHOUT THE BIOMEDICAL
RESEARCH ENTERPRISE.
DR. BERNARD WAS PREVIOUSLY AS
DR. HODES MENTIONED THE DEPUTY
DIRECTOR OF THE NATIONAL
INSTITUTE ON AGING FROM 2008 TO
2021 AND SHE'S BEEN INVOLVED IN
A WIDE VARIETY OF NIH ACTIVITIES
TO FURTHER DIVERSITY.
DR. BERNARD HAS BEEN RECOGNIZED
WITH MULTIPLE AWARDS FOR HER
LEADERSHIP INCLUDING THE 2020
NIH DIRECTOR'S AWARD FOR EQUITY,
DIVERSITY AND INCLUSION AND SHE
HAS AGREED TO PROVIDE AN UPDATE
ON THE NIH'S UNITE INITIATIVE
PARTICULARLY ON WHAT WILL BE
DONE IN THE NEXT YEAR.
YOU'VE HEARD ME TALK ABOUT THIS
FOR THE LAST COUPLE OF COUNCIL
MEETINGS AND DR. BERNARD IS ONE
OF THE LEADS ACROSS THE NIH FOR
THE PROGRAM.
I'M GRATEFUL TO YOU FOR COMING
AND TALKING ABOUT THIS TODAY.
>> I'M HAPPY TO TALK ABOUT THE
UNITE INITIATIVE APPROACHING THE
ONE-YEAR UNIVERSITY FOR BEING
PUBLICLY UNVEILED.
YOU HEARD ABOUT IT BUT TO RECAP,
IT WAS DRIVEN BY THE EVENTS OF
2020 WHERE WE SAW MORBIDITY AND
MORTALITY FOR ETHNIC AND RACIAL
MINORITIES IN OUR COUNTRY DUE TO
THE COVID PANDEMIC.
WE SAW ESCALATING VIOLENCE AND
BEFORE THE ACCENTUATION OF THE
KILLING OF SIX ASIAN WOMEN IN
ATLANTA.
THIS BROUGHT INTO LIGHT THE
RACIAL AND ETHNICIN JUSTICE IN
OUR COUNTRY AND THE
RESPONSIBILITY WE ALL HAVE TO
ADDRESS THE ISSUE.
THAT WAS A BROAD CONSENSUS AT
THE NIH WE WERE AT A TIPPING
POINT AND IT WAS TIME TO PAY
ATTENTION TO THIS UNDER
SUPPORTED AREA.
WE DEVELOPED A SHARED COMMITMENT
TO ADDRESS STRUCTURAL RACISM IN
THE BIOMEDICAL RESEARCH
ENTERPRISE AND AFTER LOTS OF
INTERNAL WORK WE WERE LAUNCHED
IN FEBRUARY 2020 AND ANNOUNCED
THE NIH UNITE INITIATIVE WITH
UNITE REPRESENTS FIVE
INTERACTING WORK STREAMS.
ONE TO UNDERSTAND STAKEHOLDER
EXPERIENCES THROUGH LISTENING
AND LEARNING.
YOU MAY RECALL AN RFI ISSUED.
THIS WAS ANNOUNCED FEBRUARY 26,
FRIDAY FEBRUARY 26 AND IT WAS
RELEASED MONDAY MARCH 1.
HOPEFULLY MANY HAD A CHANCE TO
RESPOND TO THAT.
WE SAID WE'D LOOK AT NEW ON
HEALTH DISPARITIES, MINORITY
HEALTH AND HEALTH EQUITY AND
LOOK AT IMPROVING THE INTERNAL
NIH CULTURE AND STRUCTURE FOR
EQUITY AND INCLUSION AND
EXCELLENCE WITH THE THEORY WE
NEEDED TO GET OUR OWN HOUSE IN
ORDER AND ROLE MODEL WE HOPE
WILL OCCUR IN THE ECO SYSTEM AND
HOLD OURSELVES TO BE TRANSPARENT
AND COMMUNICATE AND BE
ACCOUNTABLE AND GOING TO BE
LOOKING AT THE EXTRAMURAL
RESEARCH ECO SYSTEM AND WHAT
STRUCTURAL CHANGES ARE NEEDED TO
PROMOTE WORKFORCE DIVERSITY.
ANOTHER WAY OF LOOKING AT THE
LOCI OF UNITE ILLUSTRATED HERE
COMES FROM A NATURE MEDICINE
COMMENTARY THAT LARRY TABAK AND
I AND OTHERS PUBLISHED IN
RESEARCH FOCUSSING ON THE
INTERNAL WORKFORCE AND I'LL TALK
TO YOU ABOUT HIGHLIGHTS IN EACH
OF THE AREAS AND THINGS TO LOOK
FORWARD TO.
FROM THE STANDPOINT OF THE
HEALTH DISPARITIES RESEARCH
REALM WE SAID WE'D DO A COMMON
FUND INITIATIVE ON ADDRESSING
HEALTH DISPARITIES AND
MULTIMILLIONS OF DOLLARS AND THE
FOA WAS RELEASED AND 11 AWARDS
ANNOUNCED.
THERE ARE SIX LOOKING AT
RESEARCH TO ADDRESS HEALTH
DISPARITIES AND IMPROVE HEALTH
IN GENERAL AND LOOK AT MINORITY
SERVING INSTITUTIONS AND AN
ADDITIONAL COMPETITION FOR
MINORITY SERVING INSTITUTIONS.
WE'RE LOOKING AT DATA SHOWING
THAT LIFE EXPECTANCY HAS GONE
DOWN WITH THE COVID PANDEMIC.
THERE'S ALWAYS BEEN
DISCREPANCIES.
HERE'S THE TOTAL POSSIBLE LIFE
EXPECTANCY ON NON-HISPANIC
WHITES, BLACKS, LATINOS.
THIS IS KNOWN AS THE LATINO
PARADOX IN SPITE OF HIGH
PREVALENCE OF DIABETES LATINOS
HAVE A LONGER LIFE EXPECTANCY
AND YET EVERYONE HAD THEIR LIFE
EXPECTANCY GO DOWN WITH THE
PANDEMIC AND MORE DRAMATICALLY
WITH THE LATINOS WITH THE
PANDEMIC.
WE'RE VERY CONCERNED ABOUT THIS
AND SOME THINGS BEING DONE TO
ADDRESS IT IS WE'RE WORKING HARD
ON BEING MORE ACCOUNTABLE AND
TRANSPARENT AND ACCURATE AIN
CATALOGING WHAT WE SEE IN HEALTH
DISPARITY RESEARCH AND WORK ON A
COMMON FUND INITIATIVE FOR
FISCAL YEAR '23 TO TRY TO
ADDRESS SOME ISSUES.
IN TERMS OF WHAT WE'RE DOING AND
HAVE DONE WITH REGARDS TO
INTERNAL WORKFORCE, WE FOR THIS
FISCAL YEAR '22 BEGINNING
OCTOBER 1 NOW HAVE A PERFORMANCE
METRIC AND PERFORMANCE
EXPECTATION FOR DIRECTORS AS
THEY LEAD PEOPLE TAKE INTO
CONSIDERATION DIVERSITY, EQUITY
AND INCLUSION AND ACCESSIBILITY.
THERE ARE REQUIREMENTS FROM THE
DEPARTMENT OF HEALTH AND HUMAN
SERVICES AND THE NIH
REQUIREMENTS ARE MORE EXTENSIVE.
THERE'S AT LEAST FOUR COMPONENT
TO THAT AND EYE COMPONE -- A COMPONENT
IS THE RACIAL AND ETHNIC AND
EQUITY PLANS FOR THE 27
INSTITUTES AND CENTERS.
THIS IS MODELS AFTER WHAT WAS
DONE IN THE ANTI-HARASSMENT
EFFORTS IN 2018 WHERE THERE WAS
AN ANTI-HARASSMENT PLAN AND
THEY'LL BE CUSTOMIZED TO THE
I.C.s CULTURE AND CIRCUMSTANCES
SO THEY'LL BE FLEXIBLE AND
VARIABILITY AMONG INSTITUTES AND
CENTERS AND DESIGNED TO BE
ACCOUNTABLE WITH LONG TERM AND
SHORT TERM MEASURES AND THERE'LL
BE A LOT OF ANALYSIS AND SHARING
OF KNOWLEDGE AMONG THE I.C.s.
IT REQUIRED A LOT OF INVESTMENT,
INTELLECTUAL CAPITAL AND TIME
AND FUNDS.
PEOPLE WILL ASSESS, DESIGN,
IMPLEMENT, REPORT AND THEN GO
BACK FURTHER FOR CONTINUED
IMPROVEMENTS.
THIS WAS UNMAILED FOREVER
-- NOVEMBER 4 AND THEY WERE TO
DESIGN AND TURN IT INTO THE
REVIEWER DURING THE MONTH OF
APRIL AND ONCE APPROVED, EVERY
INSTITUTE AND CENTER IS EXPECTED
TO BEGIN THE IMPLEMENTATION WITH
THE EXPECTATION THEY'LL REPORT
ON WHAT THEY ACCOMPLISH AND
THINKING ABOUT WHAT THEY WANT TO
DO FOR THE COMING FISCAL YEAR
WITH REGARD.
ANOTHER THING WE'RE TRYING TO DO
INTERNALLY IS THE POWER OF THE
WORKFORCE RECOGNITION PROJECT.
THIS WAS LAUNCHED BY MEMBERS OF
THE UNIT COMMITTEE THAT MADE THE
POINT WHAT YOU SEE AROUND YOU
INFLUENCES YOUR SENSE OF
BELONGING AND THERE'S QUITE A
BIT OF DIVERSITY AROUND NIH BUT
PERHAPS NOT WELL REPRESENTED.
THESE ARE PICTURES AND YOU SEE
ALL PAST NIH DIRECTORS.
ONE WOMAN DIRECTOR AND THE REST
NON-HISPANIC WHITE MALES.
WHEN YOU GO TO THE CLINICAL
CENTER THERE'S LITTLE DIVERSITY
WITH THE EXCEPTION OF THIS
DISPLAY PUT UP RECENTLY DURING
THE COVID PANDEMIC.
THE INTENT IS TO CAPTURE THE
WIDE RANGE OF PEOPLE WHO
CONTRIBUTE TO THE SUCCESS OF THE
NIH RESEARCH ENTERPRISE.
YOU SEE WHAT IS REPRESENTED
HERE.
THIS IS A PICTURE SHOWING THE
WALK-THROUGH OF UNVEILING OF THE
INSTALLATION IN LATE NOVEMBER IN
THE CLINICAL CENTER BETWEEN THE
SOUTH ENTRANCE AND THE LIBRARY.
AT SOME POINT WE'LL ALL BE ABLE
TO GET BACK FIS PHYSICALLY AND
YOU SEE DR. TABAK AND
DR. JACKSON WHO LED THE TEAM TO
DEVELOP ALL OF THIS.
DR. COLLINS AND THERE'S MORE IN
THE CLINIC CENTER CAFETERIA AND
BUILDING 1 WHERE THE OFFICES ARE
LOCATED AND INSULATION SHOWING
THE CENTER DIRECTORS IN BUILDING
1 AND THEY'RE GREAT PLANS TO
INCLUDE THIS FOR MULTIPLE
CAMPUSES TRYING TO DEMONSTRATE
FOR PEOPLE EVERYONE IS INCLUDED
FOR PUSHING THE SCIENCE FORWARD.
YOU SEE FRANCIS COLLINS TAKING A
PICTURE TO SHARE WITH
COLLEAGUES.
WE HAVE A PROGRAM UNVEILED IN
DECEMBER 2020.
THE DISTINGUISHED SCHOLARS WAS
DESIGNED TO DEVELOP
SELF-REINFORCING COMMUNITIES OF
PRINCIPLE INVESTIGATORS BUILT ON
THE PROGRAMS TO DO WHAT'S CALLED
COHORT RECRUITMENT, PEOPLE ARE
BROUGHT IN AS GROUPS.
NOT JUST ONE-OFF SORTS OF HIRES.
THE THOUGHT WAS IF YOU CAN
SELECT PEOPLE WITH DEMONSTRATED
INTEREST AND TRACK RECORD IN
DIVERSITY YOU FOSTER MORE
DIVERSITY IN GENERAL AT
INSTITUTES AND CENTERS THEY
LEAD, ETCETERA.
IT'S BEEN IMPACTFUL.
WHAT WAS BEING SEEN PRIOR TO THE
START OF THE COHORT RECRUITMENT
IS THE PERCENTAGE OF TENURE
TRACK INVESTIGATORS WAS GOING
PROGRESSIVELY DOWN AND THE
PROGRAM WAS STARTED IN 2010 AND
THE PERCENTAGES STARTED GOING UP
AND YOU ADD THE DISTINGUISHED
SCHOLARS PROGRAM AND THERE'S AN
INCREASE OR ACCELERATION IN THE
RATE OF DIVERSIFICATION.
THE SCHOLARS AREN'T NECESSARILY
SOMEONE FROM AN UNDER
REPRESENTED GROUP AND LED TO
CHANGES IN NUMBERS AND
EVALUATING IN CHANGES AND IMPACT
AT THE INSTITUTES AND CENTERS.
THE DATA WERE SUFFICIENTLY
IMPRESSIVE THAT EXTRAMURAL
OPPORTUNITY WAS BASED ON WHAT'S
HAPPENING WITH THE DISTINGUISHED
SCHOLARS PROGRAM AND CREATE
CULTURES OF INCLUSIVE EXCELLENCE
AND GIVE FUNDS TO ACADEMIC
INSTITUTIONS TO DO FACULTY
COHORT HIRING AND DO MENTORING
AND DEVELOPMENT AND LOOK AT THE
INSTITUTION TO MAKE SURE THERE'S
NOT BIAS LOOK AT ENHANCING
EQUITY AND MENTORING OR
WORK/LIFE ISSUES AND OPPORTUNITY
FOR COMPETITION FOR A
COORDINATING CENTER IN FISCAL
YEAR '21.
OVERALL A COMMITMENT OF UP TO
$241 MILLION FROM THE NIH COMMON
FUND.
THE FIRST COMPETITION YIELDED
SIX COHORTS INVOLVING SEVEN
INSTITUTIONS.
THIS IS A COLLABORATION THERE'S
HIGH AND LOW RESOURCE
INSTITUTIONS.
WE'RE EXCITE ABOUT THE FIRST
COHORT.
THERE'S A COMPETITION FOR THE
FISCAL YEAR.
THE APPLICATIONS ARE ALREADY IN.
THERE'LL BE AT LEAST ANOTHER
FOUR OR MORE COHORTS ADDED AND
SOON BE THE RELEASE OF AN FOA
FOR A THIRD ROUND OF COMPETITION
WITH AT LEAST ANOTHER FOUR
COHORTS INVOLVED AND MOREHOUSE
SCHOOL OF MEDICINE WILL LOOK AT
THE OUTCOMES AND GENERALIZABLE
PRINCIPLES WE CAN CONSIDER FOR
OTHER FUNDING OPPORTUNITY
ANNOUNCEMENTS GOING FORWARD.
THERE'S A LOT OF THINGS THAT ARE
ON THE WAY THAT I WOULD
ENCOURAGE YOU TO KEEP ON AS
PUBLISHED AND THESE WERE
DISCUSSED AT THE COMMITTEE TO
THE DIRECTOR MEETING AND
APPROVED AND THINGS LIKE GOING
THROUGH THE PARTNERSHIP AWARDS
PROGRAM.
IT'S BEEN LED BY THE NATIONAL
INSTITUTE OF GENERAL MEDICAL
SCIENCES THAT SUPPORTS K-12
S.T.E.M. EDUCATION AND GIVEN WE
KNOW THAT SCIENCE IDENTITY AS
EARLY AS MIDDLE SCHOOL AND IT'S
ONGOING.
THERE'S PLANS TO STRENGTHEN
DIVERSITY AND MENTORING LANGUAGE
AND PARENT TRAINING GRANT AND
FELLOWSHIP FOAs.
AND INCREASE THE USE OF
DIVERSITY SUPPLEMENT FOR SMALL
BUSINESS AWARDS.
EARLY ON WITH UNITE WITHIN THE
FIRST MONTH WE WERE PUBLICLY
UNVEILED, THERE WAS AN
ANNOUNCEMENT OF SOMETHING CALLED
PEDP AS PART OF A FUNDING
OPPORTUNITY ANNOUNCEMENT FROM
THE NIH WIDE BRAIN INITIATIVE.
IT'S A FUNDING OPPORTUNITY
ANNOUNCEMENT CALLING FOR
CONSIDERATION OF PLANS TO
ENHANCE DIVERSE PERSPECTIVES AS
PART OF THE SCORING.
IT'S BROADLY DEFINED AND A
KEEPING WITH NIH INTEREST IN
DIVERSITY.
BY RACE, ETHNICITY, GENDER,
DISABILITY STARTS -- STATUS AND
THE GOAL IS TO HAVE THE LANGUAGE
PUT IN OTHER ANNOUNCEMENTS.
OTHER AREAS ARE PROMOTING
INSTITUTIONAL CULTURE CHANGE IN
SUPPORT OF INCLUSIVITY AND
EQUITY ABOVE AND BEYOND THE
FIRST INITIATIVE.
AND I ASK IF YOU AREN'T ALREADY
A SUBSCRIBER TO MY BLOG KEEP AN
EYE OUT.
WE MAY HAVE THINGS TO HELP
SUPPORT THAT IN THE NEAR
TEMPERATURE.
-- FUTURE.
THERE'S A LAUNCH TO CONDUCT
OBJECTIVE CLIMATE ASSESSMENTS
AND CRITICAL SELF-STUDIES AND
DEVELOP ACTION PLANS BASED ON
RESULTS.
FOR ADVANCEMENT IN EQUITY AND
INCLUSION AND BUILD RESEARCH
CAPACITY AT MINORITY SERVING
INSTITUTIONS.
THIS WOULD INCLUDE BUILDING UPON
A MECHANISM CALLED S10
INSTRUMENTATIONS.
INSTRUMENTATION GRANT AND THE
DEVELOPMENT GRANTS PROGRAM.
SPAD IS PART OF THE BUILD
INITIATIVE STARTED ALMOST A
DECADE AGO NOW AND FOUND TO BE
HELPFUL IN THE NETWORK OF
INSTITUTIONS SUPPORT ED BY THAT
INITIATIVE IN TERMS OF MAKING
SURE THERE'S OFFICE OF RESEARCH
ADMINISTRATION THAT CAN SUPPORT
RESEARCHERS.
THE INTENT IS TO EXPAND WHAT HAS
BEEN DONE THERE.
PLANS FOR ENTREPRENEURIAL
TRAINING AND POTENTIALLY HAVE A
YEARLY MEETING BETWEEN NIH
LEADERSHIP AND LEADERS OF
MINORITY SERVING INSTITUTIONS.
THEN LOOKING INWARDLY, SOME
PLANS TO IDENTIFY AND CHANGE NIH
PROCESSES AND POLICIES THAT
CONTRIBUTE TO INEQUITIES IN
FUNDING SUCH AS DEVELOPING AND
LAUNCHING A TRAINING PROGRAM FOR
SCIENTIFIC REVIEW AND PROGRAM
OFFICERS TO REDUCE IMPLICIT BIAS
AND INCREASE EQUITY AND
INCLUSIVITY AND INTERACTIONS
WITH INTRAMURAL COMMUNITY.
I'LL GIVE CSR CREDIT THEY'VE
ALREADY DONE A WONDERFUL JOB
TRAINING THEIR SROs AND
REVIEWERS ABOUT IMPLICIT BIAS.
PLANS TO DEVELOP GUIDANCE TO
HELP INSTITUTES AND CENTERS
ENHANCE THE DIVERSITY OF THEIR
PRINCIPLE INVESTIGATORS FUNDED
IN THEIR RESEARCH PORTFOLIO.
PLANS TO IMPROVE REVIEW CRITERIA
DESCRIPTIONS TO DECREASE
POSSIBLE SOURCES OF BIAS SUCH AS
INSTITUTION OR REPUTATIONAL
BIAS.
AGAIN, SET UP A SCIENTIFIC
REVIEW HAS BEEN IN THE VANGUARD
IN TERMS OF EXPERIMENTING AND
MEANS BY WHICH THAT CAN BE
ACCOMPLISHED AND THE INTENT HERE
IS FOR THE UNITE INITIATIVE TO
PARTNER WITH THEM AND HOPEFULLY
ACCELERATE THAT PROCESS.
THEN FINALLY I'D LIKE TO TURN
BACK TO THE RFI I'VE MENTIONED
AT THE BEGINNING.
AS I SAID, WE HAD A REALLY
ROBUST RESPONSE TO IT.
IT OPENED MARCH 1.
THE INTENT WAS TO HAVE IT CLOSE
APRIL 10 AND THERE WAS SO MUCH
INTEREST IN RESPONDING.
RESPONSE ALL ASPECTS OF THE
BIOMEDICAL WORKFORCE AND
POLICIES AND PARTNERSHIPS,
RESEARCH AREAS AND OTHER IDEAS
PEOPLE MIGHT HAVE.
WE ARE NOT DONE BUT AT A HIGH
LEVEL OF THE 1100 RESPONSES
ALMOST HALF WERE FROM ACADEMIA.
A LITTLE MORE THAN 10% FROM NIH
AND THERE WERE POST-DOCS AND
OTHERS AND THREE CROSS-CUTTING
FINDINGS FROM THE TOP LEVEL
ANALYSIS.
NUMBER 1, ACTION ARE MORE
IMPORTANT THAN WORDS AND PEOPLE
WERE NOT INTERESTED IN NIH DOING
POSTURING.
THIS IS MARCH THROUGH APRIL
2021.
I HOPE PEOPLE SEE WE ARE ABOUT
DOING THINGS.
SECOND WAS PEOPLE WERE LOOKING
TO ENHANCE PROGRAMS AND
ACTIVITIES.
I HOPE WE'LL ARE BEGINNING TO
SEE WHAT WE ARE ABOUT AND 3,
THERE'S NO EASY BUTTON.
AS A CO-LEAD OF THE INITIATIVE I
CAN'T AGREE MORE STRONGLY.
THERE'S NO ONE WAY OF GETTING
ALL THE THINGS DONE THAT WED
LIKE TO DO WE'RE TALKING ABOUT
OVERALL PROCESS AND EVERY STEP
TAKES YOU ALONG THE WAY.
THERE WERE A SMALL NUMBER OF
RESPONDENTS WHO WE PERCEIVED NO
PERCEPTION OF RACISM AND PEOPLE
COULD INTERPRET THAT IN WHATEVER
FASHION THEY WOULD LIKE TO
INTERPRET IT.
THE PLAN IS THERE'LL BE
CONTINUED ANALYSIS AND SYNTHESIS
AND HOPEFULLY FULL REPORTS NOT
TOO FAR INTO THE CALENDAR YEAR
AND PLANS TO TRIANGULATE THE
FINDINGS FROM THIS WITH
LISTENING SESSIONS AND MAYBE YOU
HEARD OF THOSE HELD LATELY.
WE HOPE TO HAVE THIS AVAILABLE
FOR EVERYONE TO LOOK AT IN THE
NOT TOO DISTANT FUTURE AND
APPRECIATE EVERYONE WHO HAS
PROVIDED FEEDBACK AND HOPEFULLY
AGAIN YOU HAVE BEGUN TO SEE THAT
WE'RE ADDRESSING A LOT OF THE
THINGS THAT HAVE BEEN IDENTIFIED
AS CONCERNS.
I AM -- I HAVE NOT GIVEN YOU A
FULL VIEW OF THE UNITE PROCESS.
PLEASE GO TO OUR WEBSITE.
YOU CAN GOOGLE NIH UNITE AND IT
WILL TAKE YOU THERE OR USE THE
URL TO GET TO THE MILESTONES AND
PERFECTING PAGE AND I WANT TO
THANK THE 85 PLUS INDIVIDUALS
WHO -- THERE'S ONLY TWO
FULL-TIME PAID PEOPLE ON THE
PROJECT AND THOSE WHO
VOLUNTEERED THEIR TIME AND I'M
HONORED TO CO-LEAD THIS WITH THE
PRINCIPLE DEPUTY DIRECTOR AND
THE DIRECTOR OF MANAGEMENT AND I
REALLY SHOULD HAVE ENDED WITH MY
FAVORITE SLIDE WHICH IS GREAT
MINDS THINK DIFFERENTLY BUT I'D
BE HAPPY TO ANSWER QUESTIONS AT
THIS POINT.
>> THANKS SO MUCH, MARIE.
THAT WAS INFORMATIVE AND
INSPIRATIONAL.
ARE THERE QUESTIONS?
DISCUSSION?
HOW ARE THESE ISSUSUES PLAYING OUT
IN YOUR INSTITUTION.
A GREAT OPPORTUNITY TO DISCUSS.
VICKY.
>> I WANTED TO CONGRATULATION
DR. BERNARD AS SOMEONE WHOSE
BEEN WORKING ON THESE ISSUES
WITHIN OUR PROFESSIONS IN
LANGUAGE AND THIS IS SEE CHANGE
WORK.
YOU'VE DONE A GREAT DEAL IN A
SHORT PERIOD OF TIME.
CONGRATULATIONS ON THE SURGE.
I WAS REALLY GLAD TO SEE THAT
THERE ARE PLANS FOR LOOKING
STRUCTURALL
STRUCTURALLY.
LOOKING AT THE POLICIES AND
PROCEDURES AND EXPECTATIONS OF
REVIEWERS SO THAT ONCE WE BRING
ALL THIS GREAT DIVERSITY IN,
THEY CAN STILL GET FUNDED AND
THEY'RE WILLING TO REMAIN A PART
OF THE SYSTEMS THAT NIH HAS.
THE QUESTION I HAVE IS RELATIVE
TO -- THEY WERE CALLED REAPS, I
THINK, BUT THEY WERE EQUITY
PLANS.
I'M WONDERING WHAT GUIDANCE YOUR
PROVIDING INDIVIDUALS AS THEY'RE
DEVELOPING THOSE PLANS.
>> THANK YOU FOR THE QUESTION.
>> YES, WE CALL THEM RACIAL AND
ETHNIC EQUITY PLANS OR REEP.
THERE'S BEEN A SMALL CADRE OF
SUBJECT MATTER EXPERTS HERE AT
NIH WHO KNOW ABOUT BEHAVIORAL
AND SOCIAL RESEARCH AND KNOW
ABOUT INSTITUTIONAL CULTURE
CHANGE AS WELL AS AN OUTSIDE
CONSULTANT WHOSE WORKED WITH US
DR. JAY BRUCE STEWART DURING THE
OBAMA WAS RESPONSE I AM FOR A
GOVERNMENT WIDE EQUITY AND
INCLUSION EXECUTIVE ORDER AND
WORKED WITH PERSONAL MANAGEMENT.
THIS CADRE OF FOLKS HAVE WORKED
HARD BETWEEN THE BEGINNING OF
ALL THIS AND BEGINNING OF
NOVEMBER TO DEVELOP GUIDANCE TO
HELP ALL THE INSTITUTES AND
CENTERS TO THINK THROUGH HOW
THEY SHOULD DO THIS.
IT'S A 24-PAGE DOCUMENT WITH THE
THEORY BEHIND IT EXAMPLES OF HOW
YOU MIGHT GO ABOUT IT AND
TEMPLATES TO USE AND NOW SINCE
NOVEMBER 4 THROUGH OCTOBER 1
THEY'RE AVAILABLE FOR
CONSULTATION TO HELP IN MOVING
THIS FORWARD.
THERE HAVE BEEN NIH CONSULTATION
AND CONTACTS WILL BEGIN
CONVENING ON A REGULAR BASIS SO
PEOPLE COMPARE AND CONTRAST
CHALLENGES THEY'RE FACING.
WE'RE DOING OUR BEST TO PROVIDE
A LOT OF SUPPORT BUT IT WILL
ULTIMATELY COME DOWN IT EACH
INSTITUTE AND CENTER BECAUSE
EACH HAS ITS OWN UNIQUE CULTURE
AN NEEDS.
IT WILL BE INTERESTING TO SEE
WHAT WE HAVE COME APRIL 1.
>> THANK YOU.
>> OTHER COMMENTS OR QUESTIONS.
>> I'D WLIK TO ASK A QUESTION,
IF I MAY.
YOU TALKED A LOT ABOUT COHORTS
AND I THINK THAT'S SOMETHING WE
THOUGHT ABOUT AND YOU WENT
THROUGH IT QUICKLY SO SORRY IF I
MISSED IT CAN YOU TALK ABOUT THE
CONSOLATION OF COHORTS BY CAREER
STAGE AND IT SEEMS LIKE A
CONSTRUCT WE'RE THINKING ABOUT
AT OUR UNIVERSITY.
TO TALK ABOUT THAT MORE WOULD BE
WONDERFUL.
>> I WAS HERE TO TALK ABOUT NIH
UNITE AND DIDN'T TAKE AN
ADVANTAGE ABOUT WHAT MY OFFICE
OF THE OFFICE OF SCIENTIFIC
WORKFORCE DIVERSITY IS DOING AND
I DON'T KNOW I'LL BE ABLE TO
PICK IT UP QUICKLY BUT WILL SEND
IT FOR DISSEMINATION WE'RE
HAVING A WORKSHOP FEBRUARY 23
AND 24 FOR THE IMPLEMENTATION
FOR COHORTS BECAUSE IT CAN BE
EFFECTIVE THROUGHOUT THE PATHWAY
OF BECOMING A SCIENTIST AND
PROGRAM FOR COHORTS AT THE
POST-DOC LEVEL AND EARLY CAREER
LEVEL PARTICULARLY SOMETHING
CALLED THE MOSAIC AWARD
SPONSORED BY THE INSTITUTE OF
SCIENCES AND THE KEY -- ONE OF
THE KEY COMPONENTS OF THAT IS
ALLOWING THOSE PEOPLE TO GET
TOGETHER AND BE SUPPORTIVE OF
EACH OTHER, MAKING SURE THEY'RE
GETTING EXTRA SUPPORT AND
MENTORING FROM PEOPLE WHO ARE
EXCELLENT MENTORS.
AND BEING SENSITIVE TO WHAT THE
ENVIRONMENT TRULY IS WHERE THEY
ARE AND WHAT SORTS OF CHANGES
MAY NEED TO BE MADE, ADJUSTMENTS
MAY NEED TO BE MADE TO THE
ENVIRONMENT.
WHEN I WAS TALKING ABOUT THE
THINGS COMING FORWARD IN THE
NEXT MANY MONTHS LOOKING AT
ENVIRONMENT AND AWARDS FOR
MENTORING, THOSE ARE ALL
COMPONENTS OF IT AND IT'S ALL
PUT TOGETHER IN AN INITIATIVE
AND IN THE NATIONAL INSTITUTE OF
GENERAL MEDICAL SCIENCES AND THE
MOSAIC K99R00 IN THE RECRUITMENT
OF ADVANCEMENT OF CAREER -- I'M
NOT GOING TO BE ABLE TO GIVE YOU
THE FULL BUT IRACDA IS ANOTHER
EXAMPLE.
THERE'S A LOT OUT THERE.
THERE'S THE ASSOCIATIONS OF THE
AMERICANS C CHANGE INITIATIVE.
WE'LL TALK ABOUT THAT FEBRUARY
23 THROUGH 24.
>> THANK YOU AND THANKS FOR A
GREAT TALK.
I REALLY ENJOYED IT.
>> THANK YOU.
>> I ENJOYED YOUR TALK.
I ASSUMED A NEW ROLE AS
ASSOCIATE DEAN FOR STUDENT
RESEARCH AND INCLUSIVELY I WANT
MY INSTITUTION TO THINK ABOUT
THE YEAR THAT STUDENTS TAKE OFF
TO DO RESEARCH.
I WANT THEM TO THINK BIT IN THE
SAME CONTEXT AS FINANCIAL AID
BECAUSE THERE'S UNEQUAL ACCESS
IN TAKING THE EXTRA YEAR OFF AND
IN THE CONTEXT OF RESEARCH BUT
NO I THINK WHAT WE NEED TO DO IS
TO THINK OF IT IN CONTEXT OF
BEING LEVELLING THE PLAYING
FIELD SO EVERYONE HAS THE
OPPORTUNITY TO TAKE THE YEAR OFF
AND THERE'S NOT A FINANCIAL
IMPEDIMENT TO DOING SO.
I'M NOT SURE HOW THE NIH CAN
PLAY A ROLE BUT WOULD BE
FANTASTIC IF THERE WAS NON-NIH
PROGRAM SUPPORT FOR PROGRAMS OUT
THERE BECAUSE THERE ISN'T ALWAYS
THE WEALTH AT MANY INSTITUTIONS
TO SUPPORT THE FIRST ACADEMIC
EXPERIENCE WITH A MENTOR WHO MAY
NOT BE FUND ORDER HAVE THAT
RESOURCE.
YOUR THOUGHTS ABOUT THAT.
>> THAT'S A GOOD QUESTION AND
SOMETHING WE'RE STRUGGLING WITH.
FOR INSTANCE, YOU CAN OFTEN
THINK ABOUT MAYBE WHAT YOU CAN
DO IS PROVIDE SUPPORT FOR
MENTORS AND THOSE MENTORS CAN
SUPPORT THOSE STUDENTS WHO COME
FROM UNDER REPRESENTED
BACKGROUNDS BUT IF THOSE MENTORS
DON'T HAVE NIH FUNDING WE'RE
KIND OF HARD PRESSED TO BUY THE
FUNDING.
BUT WHILE HAVE TO THINK ABOUT
ARE THERE CREATIVE WAYS MUCH
GETTING THERE.
I WOULD CERTAINLY SAY THAT THE
DIVERSITY SUPPLEMENT PROGRAM
THAT NIH HAS IS A GREAT MEANS OF
HELPING PEOPLE EARLY IN THEIR
CAREERS TO ADVANCE, AGAIN, IT
HAS TO BE A SUPPLEMENT TO
SOMEONE NIH FUNDED THOUGH THE
NUMBER HAVE GONE UP ONLY 4.3%
HAVE DIVERSITY SUPPLEMENTS
SORNTED SO THERE'S OPPORTUNITY
THERE.
WITH NEED TO CONTINUE TO FIGURE
OUT WAYS OF RECOGNIZING THE GAP
AND IT'S SOMETHING THAT PEOPLE
ARE THINKING ABOUT.
>> THANK YOU.
>> WE HAVE A ROBUST DIVERSITY
SUPPLEMENT PROGRAM AT NIDCD AND
WE'LL BE GIVING MORE INFORMATION
ABOUT THAT TOMORROW.
>> THANK YOU FOR YOUR LOVELY
PRESENTATION AND FOR ALL THE
GREAT WORK YOU AND YOUR TEAM
HAVE BEEN DOING.
I WANTED TO MENTION THAT AT A
LOCAL LEVEL WE SEE THE INFLUENCE
OF FOR EXAMPLE THE COHORT AWARD.
I'M AT AN INSTITUTION THAT TAKES
A LOT OF PRIDE IN ITS
ESTABLISHED TRADITIONS.
IT WAS FUN TO SEE HOW NIH
BRINGING OUT THAT COHORT WARD
CAUSED A REAL CHANGE IN ATTITUDE
TOWARDS THE IDEA OF BRING INNING
GROUPS OF FACULTY RATHER THAN
HAVING THAT REAL FOCUS ON THE
INDIVIDUAL.
MAYBE YOU KNOW WHAT I'M TALKING
ABOUT.
GOING FURTHER THAN THAT, NIH
OBVIOUSLY HAS A LOT OF INFLUENCE
ON BIOMEDICAL PARTS OF
UNIVERSITIES BUT WE CAN STILL
RUN UP AGAINST RESISTANCE IN THE
NON-BIOMEDICAL PARTS OF THE
UNIVERSITIES WHICH CAN BE VERY
IMPORTANT IN SORT OF HIRING AND
RECRUITMENT.
SO AT THE PROVOST OFFICE, FOR
EXAMPLE.
IS NIH TEAMING UP -- YOU
MENTIONMENTION
ED AAAS, ARE THEY TEAMING UP TO
EXPAND THE INFLUENCE IN THE
BIOMEDICAL SPHERE?
>> THAT'S ANOTHER -- WE ARE
APPROACHING IT FROM THE
STANDPOINT OF WANTING TO TO TALK
WITH ACADEMIC LEADERS ABOUT FOR
INSTANCE, WHAT ARE THIS CRITERIA
USED FOR ADVANCEMENT?
THE PEOPLE WHO MAY BE INVOLVED
WITH HEALTH DISPARITIES
RESEARCH, WITH LOTS OF MENTORING
OF UNDER REPRESENTED GROUP
SCIENTISTS MAY NOT HAVE ALL THE
PUBLICATIONS AND CELL AND NEURON
NECESSARY OFTEN TIMES FOR
PROMOTION.
CAN'T THOSE OTHER IMPORTANT
THINGS BE CONSIDERED.
WE'RE INTERESTED IN HAVING
CONVERSATIONS ABOUT THAT AND AS
THEY GET LAUNCHED, THEY WON'T
NECESSARILY JUST BE IN THE
SCHOOL OF MEDICINE.
IT WILL BE AT A BROADER LEVEL,
ABSOLUTELY.
SO WE'RE JUST GETTING STARTED.
WE'RE THINKING ABOUT IT.
DR. TUCCI WILL HELP US QUITE A
BIT WITH THAT.
YES, THERE'S A LOT OF TO BE
DONE.
WHEN WE ANNOUNCED WE WANTED TO
END STRUCTURAL RACISM, I
PERSONAL THOUGHT, WOW, WE'RE
BITING OFF QUITE A BIT THERE.
WE DON'T HAVE CONTROL OF ALL THE
THINGS THAT CONTRIBUTE TO IT BUT
WE ARE BRANCHING OUT AND DOING
MORE AND INTERESTED HOW OUR
CONVERSATIONS GO.
DR. TUCCI, DO YOU WANT TO
ELABORATE AT ALL?
>> I THINK ONE OF THE THINGS WE
STRUGGLE WITH IS THERE'S ONLY SO
MUCH THAT'S IN THE NIH PURVIEW
AND A LOT IS IN THE PURVIEW OF
THE ACADEMIC INSTITUTIONS.
TRYING TO FIGURE OUT HOW WE CAN
PARTNER, HOW WE CAN PARTNER AND
INFLUENCE IS SOMETHING I THINK
ABOUT A LOT.
HOW DO YOU REWARD FACULTY FOR
ENGAGING IN EFFORTS THAT PROMOTE
DIVERSITY AND INCLUSION WHEN WE
HAVE A TENURE SYSTEM?
HOW DO YOU INFLUENCE SALARIES OF
UNDER REPRESENTED MINORITIES AND
WOMEN WHO ARE OFTEN HAVING LOWER
SALARIES THAN WHITE MALES?
HOW CAN WE USE THE BULLY PULPIT
AND PARTNER AND COLLABORATE WITH
OTHER INSTITUTIONS AND AGENCIES
TO DRIVE AND SEE CHANGE.
>> I HOPE YOU'LL BE ABLE TO HOOK
PEOPLE RESISTANT TO CHANGE
RATHER THE PEOPLE ON BOARD OF
COURSE YOU USE THE PEOPLE ON
BOARD TO BRING IN THE OTHERS.
I GUESS I DO THINK NIH HAS A LOT
OF LEVERAGE AND CAN REACH THE
MORE RESASSISTANT FOLKS OR
INSTITUTIONS.
>> I HAVE A DISRUPTOR ROW
PROPOSAL FOR ADDRESSING THE
QUESTION RAISED.
MARIE, IT'S A GREAT TALK AND
YOU MENTION SOME MAY NOT HAVE
ACCESS TO JOBS.
IT'S IMPORTANT TO RECOGNIZE
NATURE PRESS, CELL PRESS, THESE
ARE BUSINESSES.
THEY'RE NOT ACADEMIC.
THE RISE OF BIBLIOMETRICS HAS
CAPTIVATED SCHOOLS AND USE THIS
AS A METRIC FOR IMPORTANCE AND
USE IT FOR HIRING TENURE AND ALL
KINDS OF DECISIONS.
THE BULLY PULPIT I ALWAYS
THOUGHT SOCIETIES AND NIH CAN
USE IS TO DEE DEINCENTIVIZE THE
USE OF BIBLIOMETRICS AND NO
REASON THEY SHOULD HAVE POWER
OUR INSTITUTIONS AND I SUSPECT
THE METRICS WORKED AGAINST
D.E.I., THAT IS THEY ARE PROXIES
THAT TEND TO SUBVERT THE NORMAL
PROCESS AND ALLOW US TO MOVE
FORWARD MORE RAPIDLY.
I'D LOVE TO SEE NIH THINK ABOUT
[AUDIO DIGITIZING]
>> WE'RE LOSING YOU A BIT.
>> THE GENERAL STATEMENT IS WE
USE BIBLIOMETRICS AS A MEASURE
IN TIMES FOR HIRING AND
PROMOTION.
MEASURES COME FROM BUSINESSES
NOT ACADEMIA.
CELL PRESS AND NATURE PRESS ARE
BUSINESSES AND WE'VE HANDED OVER
TO THEM A PROXY THAT WE THEN USE
FOR HIRING AND MY SUSPICION IS
THIS PARTICULAR MEASUREMENT IS
USED TO SELECTIVELY DAMAGE THE
CHANCES OF THOSE THAT FALL IN
THE DEI SECTOR.
I DON'T HAVE EVIDENCE FOR THIS
BUT CERTAINLY THE LONGER YOU
LIVE, LIKE ME, THE BETTER YOUR H
FACTOR IS AND THE PEOPLE WHO
LIVED LONGEST SO FAR TEND TO BE
OLD WHITE MALES IN ACADEMIA.
SO MY PROPOSAL IS THAT NIH USE
ITS CONSIDERABLE POWER TO
DEINCENTIVIZING THE USE OF
BIBLIOMETRICS IN ALL FORMS OF
ACADEMIC HIRING AND ADVANCEMENT.
>> THANK YOU.
>> I LOVE HEARING FROM
DISRUPTORS.
THAT'S THE WHOLE INTENT.
WE WANTED TO HEAR FROM LOTS OF
VOICES AND VIEW POINTS.
I WILL SAY THAT THE IRISH THAT
YOU'RE RAISING ABOUT THE IMPACT
FACTORS, ETCETERA, POTENTIALLY
DISADVANTAGING CERTAIN GROUPS WE
DO HAVE DATA THAT WOULD SUGGEST
THAT'S TRUE.
FROM THE STANDPOINT OF OUR
EXTRAMURAL RESEARCH DID A
CAREFUL ANALYSIS OF AREAS OF
FOCUS AND APPLICANTS FOR RO1
GRANTS FOR RACE AND ETHNICITY
AND FOR INSTANCE FOR AFRICAN
AMERICAN BLACK SCIENTISTS.
ABOUT 50% OF THEIR SUBJECT AREAS
FOCUSSED IN 13 DIFFERENT TOPICS
THAT SKEWED TOWARDS PLACES LIKE
THE NATIONAL INSTITUTE OF
MINORITY HEALTH AND HEALTH
DISPARITY RESEARCH.
WE KNOW IT DOESN'T GET AS HIGH
IMPACT FACTOR AS A BASIC FOCUS
STUDY.
I WILL ALSO SAY SOME OF OUR
UNITE MEMBERS MADE OUTREACH TO
NATURE EDITORS TO TALK ABOUT THE
ISSUE AND WHO IS ON THEIR REVIEW
PANELS.
THEY LISTENED, AT LEAST.
THEY CAME, THEY TALKED AND
THEY'VE HAD OTHER INTERACTIONS
WITH US BUT AGAIN CULTURE CHANGE
IS SLOW.
WE HAVE TO KEEP WORK AT IT.
>> RG.
>> I THINK THIS IS A VERY
IMPORTANT POINT.
AND ALL OF THESE PUBLICATIONS
ARE -- AT LEAST MOST OF THEM AND
INCREASINGLY OWNED BY BIG
BUSINESSES AND I AGREE WITH
TRYING TO GET AWAY FROM THINGS
LIKE H FACTOR AND SO ON.
THERE'S OTHER METRICS LIKE
NUMBER OF DOWNLOADS AND NUMBER
OF TWEETS ABOUT AN ARTICLE AND
SO ON THAT MAY BE MUCH MORE FAIR
AND MAY ENCOURAGE A MUCH MORE
DIVERSE OR MORE EQUITY ACROSS
EVEN TOPICS, AS YOU MENTIONED,
THINGS LIKE HEALTH DISPARITIES
MAY NOT BE CITED AS MUCH BUT MAY
BE TWEETED MORE AND DOWNLOADED
QUITE A BIT AND MAINLY TO PUBLIC
POLICY ALL OF WHICH ARE PART OF
METRICS.
I DO THINK THAT ONE THING THAT
HAS REALLY HELPED IS NIH'S
INSISTENCE THAT PUBLICATIONS ARE
MADE PUBLICLY AVAILABLE THROUGH
PUB MED CENTRAL BECAUSE THAT
ALLOWS PEOPLE TO BE CITED AND
INTERESTING ARTICLES GET OUT
THERE AND ARE AVAILABLE TO THE
PUBLIC.
I THINK THAT'S HELPED A LOT.
I THINK ONE CONCERN IS THAT MANY
JOURNALS NOW ARE REQUESTING AN
ABSORBITANT COST TO PUT ARTICLES
IN PUB MED CENTRAL.
AND IT IS $3,000 AND $4,000 TO
HAVE YOUR ARTICLE MADE PUBLICLY
AVAILABLE AND OFTEN REQUIRE IT.
THEY DON'T ALLOW THE AUTHOR TO
PUT IT IN PUB MED CENTRAL
THEMSELVES.
SO THAT IS -- IT'S A HUGE COST
AND I THINK REVIEW COMMITTEES
HAVE FOUND FAULT FOR ASKING FOR
$8,000 TO $10,000 A YEAR FOR
PUBLICATION COST AND IT'S MORE
THAN THAT IF YOU'RE PAYING FOR
THE PUB MED CENTRAL FEES TO THE
JOURNAL.
I KNOW NATIONAL HEALTH -- I
CAN'T THINK OF THE NAME BUT IN
GREAT BRITAIN THEY ACTUALLY
COVER THESE COSTS FOR AUTHORS
AND MAY BE SOMETHING NIH MAY
WANT TO THINK ABOUT.
YOU CAN TAKE IT OUT OF YOUR
GRANT BUT MOST PEOPLE HAVE NOT
BEEN ABLE TO BUDGET ENOUGH TO
COVER PUBLICATION COST THE
PUBLIC ACCESS COST.
IT MAY BE SOMETHING THAT NIH
COULD CONSIDER THAT WOULD
IMPROVE ACCESS TO SCIENCE FROM
ALL AUTHORS.
>> THANK YOU.
I'LL TAKE IT BACK TO COLLEAGUES.
ALL RIGHT, ANY OTHER COMMENTS?
MARIE, THANK YOU SO MUCH.
OBVIOUSLY VERY STIMULATING AND A
LOT OF INTEREST.
I APPRECIATE ALL THE WORK THAT
YOU DO AND LOOK FORWARD TO WHAT
WE HAVE COMING AHEAD.
>> THANK YOU.
>> ALL RIGHT.
BYE-BYE.
>> ALL RIGHT.
SO WE'RE TO THE END OF OUR TIME.
WE'VE HAD A LOT OF FANTASTIC
PRESENTATIONS AND I APPRECIATE
ALL OF YOUR ENGAGEMENT AND
INTEREST IN YOUR COMMENTS.
DOES ANYONE HAVE ANYONE YOU'D
LIKE TO RAISE AS A FINAL POINT?
ALL RIGHT.
SO TOMORROW WE HAVE ANOTHER
GREAT PROGRAM FOR A COUPLE
HOURS.
WE'LL HEAR A REPORT ON OUR
INCLUSIVE AND DIVERSITY EFFORTS.
WE'LL SEE YOU THEN.
ANY LAST WORDS, BECKY?
>> SEE YOU ALL TOMORROW AT
10:00.
BYE.