>> WE'LL GET STARTED.
WELCOME, EVERYONE, TO THE 152ND
NATIONAL ADVISORY COUNCIL ON
AGING.
BEFORE I TURN IT OVER TO DR.
RICHARD HODES, OUR DIRECTOR, I'D
LIKE TO DO A QUICK ROLL CALL.
WHEN I READ YOUR NAME IF YOU
COULD PLEASE GIVE YOUR NAME AND
INSTITUTION AND WE'LL GO AROUND.
DR. ESTHANA, DR. BAKER.
>> PRESENT, MAYO CLINIC.
>> DR. CASE.
>> PRESENT, PRINCETON
UNIVERSITY.
>> DR. SILIBERTO.
>> I'M HERE, AND I REPRESENT
FAMILIES LIVING WITH
ALZHEIMER'S.
>> AND DR. CRUZ.
DR. GREENSPAN.
>> I'M HERE, UNIVERSITY OF
PITTSBURGH.
>> DR. HUANG.
>> I'M HERE, UCSF GLADSTONE.
>> REVEREND DR. H O.U.MO.
>> I'M HERE, REPRESENTING THOSE
LIVING WITH ALZHEIMER'S AND
OTHER DEMENTIA.
>> DR. ANUIG.
>> I'M HERE, HARVARD MEDICAL
SCHOOL.
>> DR. KAHN.
DR. LONGO.
>> I'M HERE, STANFORD
UNIVERSITY.
>> DR. .
>> PRESENT, AMERICAN GERIATRICS
STOAT.
>> DR. MANLY.
>> HERE, ACADEMY COLUMBIA
UNIVERSITY.
>> DR. PETERSON.
>> HERE, UNIVERSITY OF KENTUCKY.
>> DR. RUBEN.
DR. SNYDER.
>> HERE, RUSH UNIVERSITY MEDICAL
CENTER.
>> DR. VANELDICK.
>> HELLO, UNIVERSITY OF
KENTUCKY.
>> AND DR. WEIR.
>> PRESENT, UNIVERSITY OF
MICHIGAN.
>> WE DO HAVE A FEW EX OFFICIO
MEMBERS.
IS MR. WESTIN HERE?
NO, OKAY.
HE WAS HERE YESTERDAY.
WE ALSO HAVE ATTENDING VIRTUALLY
DR. APPEL.
HASN'T JOINED YET, OKAY.
AND OKAY, I THINK THAT WILL BE
IT.
I'M KEN SANTORA, EXECUTIVE
SECRETARY FOR THE COUNCIL ON
AGING, AND THE DIRECTOR OF THE
DIVISION OF EXTRAMURAL
ACTIVITIES HERE AT THE AGING
INSTITUTE.
SO WITH THAT, I'LL TURN IT OVER
TO OUR DIRECTOR, DR. RICHARD
HODES.
RICHARD?
>> THANK YOU, AND WELCOME TO THE
152nd.
I CAN DO IT.
I'D LIKE TO SHARE SOME BRIEF
EVENTS OVER THE TIME SINCE WE
LAST MET AND EXPRESS PUBLICLY
DELIGHTED WE'RE MEETING IN
PERSON WITH ALL OF YOU.
THE STATUS REPORT, SAD NEWS TO
SHARE.
THIS IS NEWS OF A FORMER COUNCIL
MEMBER NORMAN ANDERSON WHO
RECENTLY PASSED.
HE WAS KNOWN TO MANY OF US AS A
TRUE LEADER IN BEHAVIORAL AND
SOCIAL SCIENCES, DISTINGUISHED
YEAR, SUPPORTIVE MENTOR, MEMBER
OF NATIONAL ACADEMIES.
WE PAY SPECIAL TRIBUTE AS A
FORMER COUNCIL MEMBER, FIRST
FOUNDING DIRECTOR OF THE OFFICE
OF BEHAVIOR AND SOCIAL SCIENCES
RESEARCH AT NIH, WHO WAS REALLY
A TURNING POINT IN THE
RECOGNITION, STATURE, VISIBILITY
OF SOCIAL SCIENCES, BEHAVIORAL
AND SOCIAL SCIENCES AT NIH.
HE REALLY MADE A DIFFERENCE, ONE
OF THE CO-AUTHORS OF NIA'S
HEALTH DISPARITIES RESEARCH
FRAMEWORK AND WANTED TO TAKE A
MOMENT THEREFORE TO PAUSE IN
RECOGNITION, ALSO TO ASK IN LIZ
NEILSEN WANTED TO ADD COMMENTS,
REFLECTIONS.
>> YES, THANK YOU, RICHARD.
REALLY A TRUE LOSS TO THE FIELD.
NORM ANDERSON WAS A
PSYCHOPHYSIOLOGIST, EARLY WORK
BROKE SOME NEW GROUND IN THE
STUDY OF RACISM AND STRESS, AND
LINKING THAT TO HYPERTENSION IN
AFRICAN AMERICANS, CONTRIBUTED
TO ONE OF THE FIRST MODELS, LED
THE FRAMEWORK CHARACTERIZING THE
RESEARCH CONDUCTED ACROSS THE
NOTIFY WHICH INFORMED THE
FRAMEWORK AND WHICH WE PURSUE
RIGOROUSLY IN BSR ON THIS DAY.
RICHARD MENTIONED A COMMITMENT
TO MENTORING THE NEXT GENERATION
OF SCIENTISTS.
HE WAS AN ACTIVE CONTRIBUTOR IN
THE ANNUAL EARLY INVESTIGATORS
PROGRAM AT ACADEMY OF BEHAVIORAL
MEDICINE RESEARCH, HELD A LOT OF
OTHER LEADERSHIP AND SERVICE
ROLES IN THE FIELD INCLUDING CEO
OF AMERICAN PSYCHOLOGICAL
ASSOCIATION AND AT THE TIME OF
HIS DEATH HE WAS PRESIDENT ELECT
OF THE FEDERATION OF
ASSOCIATIONS IN BEHAVIORAL AND
SOCIAL SCIENCES AND WAS SET TO
STEP INTO THAT POSITION IN 2026.
HE WAS ALSO AN EXCEPTIONALLY
WARM, KIND, THOUGHTFUL PERSON, A
GENUINE PLEASURE TO BE AROUND,
AND HIS EARLY AND UNEXPECTED
DEATH IS REALLY A SHOCK TO THE
FIELD, A PLEASURE TO BE ABLE TO
HONOR HIM TODAY.
>> THANK YOU, LIZ.
WE REINFORCE ALL THOSE WONDERFUL
DESCRIPTIVE ADJECTIVES, COULDN'T
BE MORE PRECISE.
FOR THOSE WHO HAD THE
OPPORTUNITY TO KNOW HIM, HE WAS
AN EXCEPTIONAL PERSON.
AND WILL BE MISSED.
THIS IS THE ANNUAL OPPORTUNITY
TO TALK TO YOU ABOUT OUR BUDGET,
ONCE WE HAVE A BUDGET, WHICH
TYPICALLY HAPPENS AROUND THIS
LATE POINT OF THE FISCAL YEAR.
FOR FY 24, THE NIH OVERALL
BUDGET WAS $48.6 BILLION,
INCLUDING $4.5 BILLION FOR NIA,
INCLUDING $100 MILLION DIRECTED
$90 MILLION TO NIA, $10 MILLION
TO NINDS FOR ADRD, AND 12.5 FOR
PALLIATIVE CARE.
IT DOESN'T ADD TO HUNDRED, WE
SHARE THAT UNDERSTANDING.
WE'RE THANKFUL, DOING
EXCEPTIONALLY WELL IN A
CHALLENGING TIME, GRATEFUL TO
APPROPRIATORS AGE TO SUPPORT NIA
AND NIH AND OUR RESEARCHERS.
THIS IS JUST A VISUAL TO GIVE
THE SUMMARY OF WHAT'S BEEN
HAPPENING TO THE NIA
APPROPRIATIONS YEAR UPON YEAR
STARTING IN 2014.
YOU CAN SEE THE EXCEPTIONAL
GROWTH, TRULY EXCEPTIONAL AND
HISTORIC SENSE.
YOU NOTE THE COMPONENT, UPPER
PORTION OF THE BAR, WHICH IS THE
TARGET ADRD FUNDS, FASTEST
GROWING COMPONENT, IN ADDITION
GENERAL BASE HAS GROWN TOO.
NOT MANY PRECEDENTS FOR THIS
LEVEL OF GROWTH REFLECTING
COMMITMENT OF HOUSE, SENATE,
BIPARTISAN OVER MULTIPLE
ADMINISTRATIONS I SHOULD ADD,
SUPPORTING OUR RESEARCH AND ALL
OF YOU.
THE PAYLINES ARE SUBJECT, SOME
POTENTIAL MODIFICATION AS THE
YEAR CLOSES, BUT ARE SHOWN HERE.
GENERAL PAYLINE FOR THE MOST
COMMON APPLICATIONS UNDER
$500,000 DIRECT COST, 16th
PERCENTILE WITH COMMITMENT TO
NEW INVESTIGATORS, AND
EARLY-STAGE INVESTIGATORS, ESI,
19th AND 21st.
GENERAL PAYLINE FOR MORE
EXPENSIVE APPLICATIONS, THE
HIGHER BAR.
AND THIS YEAR FOR AD AND ADRD
THE PAYLINE FOR THOSE
APPLICATIONS UNDER $5 MILLION,
17th PERCENTILE, AGAIN, 20 AND
22.
WE'VE NOTED SUBSTANTIALLY
REDUCED FROM PRIOR YEARS,
REFLECTION OF THE FACT THAT
WE'RE GETTING MORE APPLICATIONS,
MORE MERITORIOUS APPLICATIONS,
MORE EXPENSIVE APPLICATIONS, AND
THAT WE HAD AN INCREASE IN
APPROPRIATION THIS YEAR THE
MAGNITUDE OF THAT INCREASE IS
SIGNIFICANTLY THAN PRIOR YEARS.
FOR THE NIA REVIEWED
APPLICATIONS, PRIORITY SCORES
NOT PERCENTILES, GENERAL PAYLINE
PROGRAM PROJECTS 25, OTHER 25,
CAREER DEVELOPMENT 22,
FELLOWSHIPS 30, AND FOR ADRD PAY
LINES, SAME FOR PROGRAM PROJECTS
AND NIA REVIEWED RESEARCH,
SLIGHTLY HIGHER PAYLINES FOR
CAREER DEVELOPMENT AND
FELLOWSHIPS.
IN TERMS OF UPDATES, THE NUMBER
OF ACTIVE CLINICAL TRIALS IN AD
AND ADRD IS OVER 500, INCLUDING
22 8 IN DEMENTIA CARE AND
CAREGIVING, FOR THOSE WHICH ARE
TREATMENT AND PREVENT, 73 IN
PHARMACOLOGIC, 177
NON-PHARMACOLOGIC.
AND IMPORTANT AND GRATIFYING
DIVERSITY OF TARGETS IN
INTERVENTIONS.
FOR EXAMPLE, OF THE 73
PHARMACOLOGIC INTERVENTIONS, 60
TRIALS AT EARLY PHASE AMYLOID,
ALTHOUGH PRESENT IN 7,
CONSTITUTES ABOUT 12% OF THE
EARLY STAGE TRIALS, WITH A
VARIETY OF OTHER TARGETS,
INFLAMMATION, MULTI-TARGETS,
OXIDATIVE STRESS AND SO ON,
RECOGNIZING THE PROGRESS IN
UNDERSTANDING WHAT CONTRIBUTES
TO ALZHEIMER'S DISEASE AND
RELATED DEMENTIAS, AND NOW
MOVING THAT BASIC TRANSLATIONAL
INFORMATION INTO CLINICAL
TRIALS.
SIMILARLY IN THE PHASE 2/3 AND
PHASE 3, AMYLOID 40%, AND
NON-PHARM ALSO MULTIPLE TARGETS
LOOKING AT TREATMENT IN MANY
CASES PREVENTIVE STRATEGIES.
DEMENTIA CARE AND CAREGIVING, I
POINT OUT AS A RESULT OF THE
NATIONAL ACADEMIES REPORT THAT
WE SAW REPORT OUT IN 2021, AND
THE SUMMITS WHICH POINTED OUT
GAPS AND OPPORTUNITIES, EXPAND A
NUMBER OF CLINICAL TRIALS IN
THIS AREA, NO LESS IMPORTANT, NO
LESS RIGOROUS THAT WE CONDUCT
THESE TRIALS FOR CARE AND
CAREGIVING AS WE DO FOR
TREATMENT AND PREVENTION.
AND THEN NUMBERS FOR DIAGNOSTIC
AND IMAGING STUDIES, AND
NEUROPSYCHIATRIC SYMPTOMS.
SO VERY LARGE NUMBER TARGETED
AND INFORMED WAY BY RESEARCH
HAPPENING PRE-CLINICALLY TO
INCREASINGLY DIVERSE TARGETS AS
WE RECOGNIZE THE INDIVIDUAL
DIFFERENCES AMONG -- IN THOSE
PROCESSES CONTRIBUTING TO
DEMENTIA, WHETHER DIAGNOSED AS
ALZHEIMER'S OR RELATED
DEMENTIAS, NEED TO ULTIMATELY
INDIVIDUALIZE TREATMENT TO THOSE
TARGETS INFORMED BY BIOMARKERS
AND UNDERSTANDING OF UNDERRING
PROCESSES.
LAST YEAR FY 23 APPROPRIATIONS
LANGUAGE INCLUDED A DIRECTION
THAT WE CONDUCT FOR THE NATIONAL
ACADEMIES ANALYSIS OF GAPS AND
OPPORTUNITIES FOR PREVENTING AND
TREATING ALZHEIMER'S DISEASE,
VERY MUCH IN PROGRESS, MARCH OF
2023 TASK ORDER ESTABLISHED,
COMMITTEE IN SEPTEMBER LAST
YEAR, PUBLIC MEETINGS OPEN AND
CLOSED SESSIONS WITH FINAL
REPORT ANTICIPATED ABOUT A YEAR
FROM NOW, IN THE JANUARY TO
MARCH 2025, YET ANOTHER INPUT TO
INFORM OUR UNDERSTANDING OF
OPPORTUNITIES AND PRIORITIES FOR
RESEARCH.
GRANT MECHANISMS POINT OUT AGAIN
USE OF PRIZES, THE EUREKA
CHALLENGE NOT LOOKING FOR
APPLICATIONS FOR GRANT TO BE
FUNDED BUT FOR PROPOSALS TO
CARRY OUT RESEARCH, SUCCESSFUL
COMPLETION OF WHICH EARNS A
PRIZE IN THIS COMPETITION, IN
THIS CASE THE CHALLENGE TO
DISCOVER BEST DATA SOURCES,
METHODS FOR APPLYING, STRATEGIES
FOR EARLY PREDICTION OF
ALZHEIMER'S RELATED DEMENTIAS,
TOTAL CASH PRIZE $650,000 ACROSS
THREE PRAISES, 40 FOR PHASE 1,
PRIZES FOR FIRST PHASE AWARDED
LATER THIS YEAR, SECOND AND
THIRD PHASES TO FOLLOW.
A 2023 SIMILAR PRIZE CHALLENGE
ILLUSTRATED HERE WAS FOR HEALTHY
AGING START-UP, AND IT WAS
REMARKABLY SUCCESSFUL IN THE
DIVERSITY OF PROPOSALS THAT WERE
PUT FORWARD AND FUNDED.
YOU CAN SEE THEY RANGE FROM
ASSISTED WALKING DEVICES THROUGH
IMPLANTATION OF MEDICAL DEVICES,
ACROSS THE BOARD IN TERMS OF
INGENUITY, BUT BRINGING INTO THE
FOLD OF NIA-SUPPORTED RESEARCH A
GROUP OF INVESTIGATORS WHO WOULD
NOT NECESSARILY HAVE TURNED TO
NIH FOR SUPPORT.
WE HOPE WILL ADD TO THE FUTURE
BREADTH OF INGENUITY AND
INNOVATION IN THE FIELD.
IN TERMS OF DISSEMINATING
PROGRESS, SINCE JANUARY WE LAST
MET, THERE HAVE BEEN PUBLISHED
RESEARCH HIGHLIGHTS, BLOG POSTS,
NEWS OPPORTUNITIES, WHICH I HOPE
YOU ALL HAVE TAKEN ADVANTAGE OF,
AND HAD ACCESS TO.
OVER THAT SAME PERIOD, AMY KELLY
AND I ALONG WITH SENIOR STAFF
PARTICIPATED IN A NUMBER OF
MEETINGS WITH INTEREST GROUPS
AND ADVOCACY GROUPS ALONG WITH
EIGHT CONGRESSIONAL BRIEFINGS
AND HEARINGS.
AND I SHOULD NOTE THAT TOMORROW
ABOUT THIS TIME THERE WILL BE
THE SENATE APPROPRIATION HEARING
FOR NIH, MONICA BERTAGNOLLI AND
FIVE OF US AS INSTITUTE
DIRECTORS WILL BE PARTICIPATING
IN THAT.
ANNOUNCEMENTS?
THE 50th ANNIVERSARY, IN CASE
ANYBODY MISSED THAT.
IF YOU DO THE ARITHMETIC,
152nd, THREE PER YEAR,
INVITING TO CELEBRATE WHAT WE'VE
ACCOMPLISHED OVER THESE YEARS.
AS A PART OF THAT SPECIAL
ARTICLE PUBLISHED IN JAGS, AND
WE LOOK TO THAT AS A COLLECTION
OF ARTICLES REFLECTING BACK ON
THE ACCOMPLISHMENTS OF NIA AND
NIH-REPORTED RESEARCH.
NOT TO FORGET, THE SCHOLARS
PROGRAM, A MAIN STAY AT JUNIOR
FACULTY AND RESEARCHERS NEW TO
THE AGING FIELD.
WE'RE BACK, IN PERSON, THIS
YEAR.
IN AUGUST WE'LL BE HOLDING THE
MEETING ON THE NIH CAMPUS BACK
THE WAY IT WAS, AFTER SOME VERY
SUCCESSFUL INTERIM YEARS WHEN OF
NECESSITY THIS WAS REMOTE.
AND WE LOOK FORWARD TO
PARTICIPATION, HOPEFULLY FOR
MANY OF YOUR CONTACTS AND
COLLEAGUES.
IF IT'S TOO LATE FOR THIS YEAR'S
APPLICATION, IT'S NOT TOO LATE
TO THINK ABOUT NEXT YEARS.
THE DOWN SIDE IS WE CAN'T SAY
YES TO EVERYONE, AND SUCCESS THE
SECOND TIME AROUND IS AN
IMPORTANT SUCCESS CRITERION AND
COMPONENT OF OUR GROUP AS WELL.
SO PLEASE, WE'LL KEEP REMINDING
YOU.
WE WON'T LET YOU FORGET.
THE NEXT SUMMIT IN ALZHEIMER'S
DISEASE RESEARCH, PRECISION
MEDICINE, HELD IN SEPTEMBER,
THESE ARE THE DATES.
WE'LL SEND OUT THE REMINDER BUT
INVITE REGISTRATION IN
ATTENDANCE IN PERSON OR REMOTE.
ONE OF THE CYCLES IS IS THE
RESEARCH SUMMIT, ALZHEIMER'S AND
RELATED DISEASE SUMMIT, THEY
ROTATE ONE EACH YEAR AND PART OF
THE OVERALL PLANNING PROCESS.
NIH-WIDE UPDATES. THERE'S A NEW
COMMON FUND PROGRAM, I HOPE ALL
OF YOU UNDERSTAND THE COMMON
FUND.
ACTUALLY OUR SPEAKER TODAY MAY
GIVE YOU A LITTLE MORE INSIGHT.
THIS IS A FUND THAT SUPPORTS
RESEARCH THAT'S OF INTEREST AND
RELEVANCE ACROSS NIH WHICH
CANNOT EASILY BE ACCOMPLISHED BY
A SINGLE INSTITUTE, WHICH FUNDS
BASED ON PROPOSAL, A VERY
COMPETITIVE WAY, THE MOST
MERITORIOUS, FIVE YEARS, TEN
YEARS MAXIMUM, TO INITIATE
RESEARCH AREAS, BUILD FIELDS
WHICH THEN TAKE OVER IN THE
MAINSTREAM OF NIH SUPPORT.
THIS NEW ONE IS ONE OF THE
PRIORITIES OF OUR NIH DIRECTOR,
MONICA BERTAGNOLLI.
THAT'S ESTABLISHMENT OF CLINICAL
RESEARCH PRIMARY CARE NETWORK.
THE NOTION BEING THAT OUR
EFFORTS TO BRING CLINICAL
RESEARCH IN GENERAL, CLINICAL
TRIALS, MORE GENERALLY ALL
CLINICAL RESEARCH, HAS BEEN LESS
THAN IT COULD BE IN REACHING ALL
OF OUR COMMUNITIES AND
UNDERSTANDING A WAY TO CARRY OUT
RESEARCH REACHES COMMUNITIES TO
DO RESEARCH IN AND PARTICIPATION
OF THOSE COMMUNITIES.
AND THE USE OF PRIMARY CARE
SETTINGS IN THIS NETWORK IS PART
OF THAT GOAL SO A GROUP OF US,
INSTITUTE DIRECTORS SERVING ON
THE OVERSIGHT GROUP, ANOTHER
GROUP, SO-CALLED SCIENCE
COMMITTEE WHICH AMY KELLEY WILL
SERVE, GIVING NIA AN IMPORTANT
PARTICIPATORY ROLE IN THIS.
WE CAN REPORT BACK AS THIS
DEVELOPS.
STAFF UPDATES, YOU MET IN
BREAKOUT SESSIONS YESTERDAY
WE'VE SEEN GREAT GROWTH OF
NECESSITY GIVEN THE EXPANSION OF
THE RESEARCH WE SUPPORT, SO WE'D
LIKE TO GO THROUGH AND HAVE EACH
OF OUR DIVISION DIRECTORS
INTRODUCE RESPECTIVELY NEW STAFF
IN THEIR DIVISION.
>> I'LL START.
FOR DIVISION OF BEHAVIORAL AND
SOCIAL RESEARCH, I'D LIKE TO
INTRODUCE MS. LESLEY GORED, A
CLINICAL TRIALS SPECIALIST.
CONDUCTING STEWARDSHIP AND
OVERSIGHT FOR BSR'S CLINICAL
TRIALS PORTFOLIO, PRE AND POST
AWARD POLICY COMPLIANCE, RISK
ASSESSMENTS, CONFLICT OF
INTEREST REVIEWS FOR SAFETY,
OVERSIGHT.
PRIOR TO JOINING BSR LESLIE
MANAGED A CONTRACT THAT PROVIDED
CLINICAL TRIALS STUDIES
MANAGEMENT SUPPORT AT NIAMS, AND
HOLDS A B.A. IN PSYCHOLOGY FROM
EMORY.
NEXT MS. CATHONY REID, AD/ADRD
STRATEGY COORDINATION, HEALTH
SPECIALIST.
SHE COMES TO US FROM THE CDC IN
ATLANTA, WAS A PROJECT OFFICER
OVERSEEING PORTFOLIOS FOR
NON-GOVERNMENTAL AGENCIES.
SHIELDS MPH FROM GEORGIA
SOUTHERN UNIVERSITY, WORKING ON
DOCTOR IN PUBLIC HEALTH AT
MERCER UNIVERSITY, DIVERSE
POPULATIONS AND HEALTH EQUALITY.
IN THE OFFICE OF DATA RESOURCES
AND ANALYTICS
WAS PROMOTED TO SUPERVISORY
POSITION, DR. ALI HOLDS A
Ph.D. FROM STONY BROOK, COMES
AFTER 12 YEARS IN THE DEPARTMENT
OF HEALTH AND HUMAN SERVICES,
MOST RECENTLY OFFICE OF THE
ASSISTANT SECRETARY FOR PLANNING
AND EVALUATION, SENIOR HEALTH
ECONOMIST.
PRIOR TO JOINING HHS MIR WAS
ASSISTANT PROFESSOR OF
ECONOMICS, UNIVERSITY OF TOLEDO.
MS.TAYLOR CUSHRER JOINED IN MAY,
SHE'S WORKING ON INITIATIVES
RELATED TO REAL WORLD DATA, DATA
SCIENCE, ARTIFICIAL
INTELLIGENCE.
SHE JOINS FROM BIOGEN DIGITAL
HEALTH, MANAGED A NETWORK FOR
MULTIPLE SCLEROSIS AND
EXPERIENCE IS REAL WORLD STUDIES
IN CANCER AND PATIENT
ENGAGEMENT, MASTER'S IN PUBLIC
HEALTH, BACHELOR'S IN
KINESIOLOGY.
LAST BUT NOT LEAST MS. MELISSA
STRIKER, A PROGRAM ANALYST,
FOURTH MELISSA IN BSR.
SHE'S SERVING AS CONTRACT
OFFICER FOR SCIENCE MANAGEMENT
AND RESEARCH ADMINISTRATION
CONTRACT AND SBIR CONTRACTS,
COORDINATING PROCESS FOR
DEVELOPING AND SUBMITTING
FUNDING OPPORTUNITIES TO THE
COMPLEX NIH FOAM SYSTEM, WE'RE
GRATEFUL.
SHE GAINED VALUABLE EXPERIENCE
FOR BOTH HER CONTRACTING AND
FUNDING OPPORTUNITY DEVELOPMENT
ROLES.
PRIOR TO WORKING INTEREST,
WORKED AT CSR.
>> THANK YOU.
>> PLEASE WELCOME FROM THE
UNIVERSITY OF KENTUCKY,
EPIDEMIOLOGIC RESEARCH ON BREAST
CANCER, CHUNYAN HE, FOCUSING ON
LONGITUDINAL AGENCY OF THE
LIFESPAN, WE PARTICULARLY
APPRECIATE BECAUSE OF THE
GROWING INTEREST IN THAT TOPIC
IN RELATIONSHIP TO AGING.
>> GOOD MORNING.
IS THIS ON?
YEAH.
ALL RIGHT.
FOR THE DIVISION OF
NEUROSCIENCE, I WOULD LIKE TO
INTRODUCE MEGAN DUFFY, JOINED
FROM THE POSTDOCTORAL POSITION
IN CELL BIOLOGY AND GENE
EXPRESSION FROM OUR NIA
INTRAMURAL PROGRAM AND PRIOR TO
THAT MEGAN GOT A Ph.D. DEGREE
NEUROSCIENCE FROM MICHIGAN STATE
UNIVERSITY WHERE SHE WAS WORKING
IN DEPARTMENT OF TRANSLATIONAL
NEUROSCIENCE, WORKING ON
PARKINSON'S DISEASE, DIVISION OF
NEUROSCIENCE SHE'S SUPPORTING
PROGRAMS IN BASIC BRAIN AGING
AND NETWORK DEGENERATIVE
PROCESSES IN THE NEUROBIOLOGY OF
AGING AND NEURODEGENERATION
BRANCH.
LAUREN KOMER, PROGRAM SPECIALIST
ALSO, IN THE NEUROBIOLOGY OF
AGING AND NEURODEGENERATION
BRANCH, SUPPORTING PROGRAMS IN
BRAIN AGING AND
NEURODEGENERATION.
SHE JOINED US FROM THE
NATIONAL -- THE NEW YORK ACADEMY
OF SCIENCE, WHERE SHE WAS
PREVIOUSLY WORKING, AND SHE
RECEIVED HER DEGREE, Ph.D.
DEGREE, FROM CORNELL UNIVERSITY
WHERE SHE WAS ALSO WORKING ON
PARKINSON'S DISEASE AND
SYNUCLEIN OPATHIES, DOING REALLY
EXCEPTIONAL BASIC SCIENCE WORK
AT THE TIME.
NEXT ONE PLEASE.
TIFFANY IS SUPPORTING PROGRAMS
IN FUNCTIONAL GENOMICS AND
GENETICS, SHE JOINED US FROM
CENTER FROM STRATEGIC
INITIATIVES AT THE MILKEN
INSTITUTE, AND SHE'S HEALTH
SPECIALIST WORKING ON THE
POPULATION AND GENETICS BRANCH
OF THE DIVISION.
TIFFANY HAS A DEGREE IN GENETICS
AND GENOMICS FROM BAYLOR
UNIVERSITY, AND FOLLOWING THAT
DEGREE SHE HAD A FELLOWSHIP AT
THE ASAG AND NHGRI, AND
SUBSEQUENTLY STUDIES MANAGE THE
PROGRAMS IN SCIENCE EDUCATION
AND STRATEGIC CONSULTING.
AND JANELLE FORET JOINED AS
HEALTH SPECIALIST, WITH THE
BRANCH OF POPULATION AND
GENETICS, AND SHE ALSO HAS
SIGNIFICANT EXPERIENCE ON
POPULATION STUDIES AND
EPIDEMIOLOGY.
SHE RECEIVED HER NEUROPSYCHOLOGY
DEGREE FROM UT AUSTIN, AND WENT
ON TO DO ADDITIONAL FELLOWSHIP
RESEARCH AT UC-SAN DIEGO,
INTERSECTION OF COGNITIVE AGING
AND WOMEN'S HEALTH AND
IDENTIFICATION OF CARDIOVASCULAR
NEUROCOGNITIVE CHANGES.
NEXT ONE PLEASE.
AND SARAH HELLMUND, DATA
SCIENTISTS PROVIDING SUPPORT,
PARTICULARLY AS RELATES NOW WITH
THE GROWTH ON APPLICATIONS
INVOLVING A.I. AND ML AND ALSO
INVOLVING ALL THE NEW DATA
MANAGEMENT AND SHARING
REQUIREMENTS AND ALL THE OTHER
DATA MANAGEMENT NEEDS WITHIN THE
DIVISION.
SHE JOINS FROM THE BOOZ ALLEN
HAMILTON, SUPPORTING NIH
PROGRAMS, A MASTER'S DEGREE FROM
HOPKINS UNIVERSITY AND B.S.
PUBLIC HEALTH DEGREE FROM OHIO
STATE UNIVERSITY.
AND FINALLY ANTOINETTE
PERCY-LAURRRY, PROGRAM DIRECTOR,
ALSO IN THE POPULATION AND
GENETICS BRANCH, SUPPORTING A
NUMBER OF PROGRAMS RELATED TO
EPIDEMIOLOGY AND HEALTH
DISPARITIES AND DIVERSITY.
AND SHE HAS A TREMENDOUS
EXPERIENCE IN THOSE AREAS, SHE
PREVIOUSLY WORKED AT NIMHD AND
NCI, AND SHE HAS MULTIPLE
DEGREES ON PUBLIC HEALTH
INCLUDING DR PH.
SO THANK YOU.
>> ALL RIGHT.
NEXT UP IS DIVISION OF
EXTRAMURAL ACTIVITIES, HAPPY TO
INTRODUCE FOUR NEW MEMBERS TO
OUR FAMILY.
FIRST OFF, SCIENTIFIC REVIEW
BRANCHI JAMES NUCCI.
HE'S GOING TO BE AN EXTRAMURAL
STAFF ASSISTANT, PROVIDING
ADMINISTRATIVE SUPPORT FOR
SCIENTIFIC REVIEW GROUP.
HE'S JOINING FROM THE CANCER
INSTITUTE, PREVIOUSLY WAS AT THE
AGING INSTITUTE AND HE
UNDERSTOOD THE ERROR OF HIS WAYS
AND CAME BACK AS HE KNOWS WE'RE
THE BETTER OF THE INSTITUTES.
NEXT UP IS DR. LISA WIGFALL, SHE
IS AN SRO, WILL BECOME AN SRO IN
THE SOCIAL AND BEHAVIORAL
SCIENCE SECTION.
WE'RE VERY FORTUNATE TO HAVE HER
AS SHE JOINS FROM CENTER FOR
SCIENTIFIC REVIEW WHICH SHE
SUPPORTED SIMILAR STUDY
CONNECTION IN CSR, AND NOW JOINS
OUR SCIENTIFIC REVIEW PROGRAM.
NEXT SLIDE.
NEXT IS A NEW MEMBER OF OUR
OFFICE OF CLINICAL RESEARCH.
WE HAVE MISS CLARISSA VINCENT,
CLINICAL OPERATIONS SPECIALIST,
IN CLINICAL OPERATIONS AND
SUPPORT BRANCH.
LET'S SEE.
MS.VINCENT WILL BE PARTICIPATING
IN THE DEVELOPMENT AND
IMPLEMENTATION OF OUR STRATEGIES
TO EVALUATE AND MONITOR CLINICAL
OPERATIONS AND ENROLLMENT
PROCESSES IN THE RESEARCH
SUPPORT OF NIA AND SHE JOINS US
FROM A CONTRACT POSITION AT
MENTAL HEALTH INSTITUTE AS A
CLINICAL RESEARCH ADVISER AND
MONITOR.
SO WE'RE HAPPY TO HAVE
MS. VINCENT JOIN US.
AND NEXT IS FINALLY WE HAVE A
NEW MEMBER OF OUR OFFICE OF
STRATEGIC EXTRAMURAL PROGRAM,
DR. VICKY CATTANI, JOINS US FROM
THE PARKINSON'S FOUNDATION, SHE
WAS ASSOCIATE DIRECTOR OF
RESEARCH PROGRAMS THERE AT THE
FOUNDATION.
AND HER ROLE WILL BE TO PROMOTE
AND SUPPORT SMALL BUSINESSES,
SEEKING SBIR/STTR FUNDING IN THE
AGE TECH SPACE.
SHE WILL BE HELPING SMALL BILLS
AWARDEES ADVANCE TOWARD THEIR
COMMERCIALIZATION.
WE WELCOME THESE FOUR NEW
MEMBERS TO DEA.
>> GOOD MORNING, IT'S MY
PLEASURE TO TWO NEW OFFICE OF
ADMINISTRATIVE MANAGEMENT STAFF,
FIRST IS JILL OLAND, NEW ETHICS
SPECIALIST IN OUR ETHICS BRANCH,
WHO WILL PROVIDE OVERSIGHT AND
REVIEW FROM NATIONAL
TRANSPORTATION SECURITY
ADMINISTRATION.
NEXT WE HAVE NED FREEMAN, I.T.
PROJECT MANAGER IN INFORMATION
TECHNOLOGY BRANCH, SERVING AS A
TECHNOLOGY PROJECT MANAGER FOR
NIA EFFORTS, JOINS US FROM MOSER
GOVERNMENT SERVICES WHERE HE WAS
A PRINCIPAL CONSULTANT.
THANK YOU.
>> GOOD MORNING, I'M PLEASED TO
INTRODUCE FOUR NEW MEMBERS OF
THE NIA OFFICE OF COMMUNICATIONS
AND PUBLIC LIAISON.
FIRST WE HAVE MARY HERON,
TECHNICAL WRITER/EDITOR, HEALTH
COMMUNICATIONS BRANCH, WORKING
ON OUR ONLINE CONSUMER HEALTH
INFORMATION AND PUBLICATIONS,
AIMED AT GENERAL PUBLIC.
THERE'S A FOCUS IN HER WORK ON
CAREGIVING, HEALTHCARE
PROFESSIONALS, CLINICAL
RESEARCH.
MARY JOINED NIA FROM THE NIH
NATIONAL LIBRARY OF MEDICINE
WHERE SHE WAS AN EDITOR.
WE ALSO HAVE TONY JARMUSZ, ALSO
A WRITER/EDITOR IN THE HEALTH
COMMUNICATIONS BRANCH, FOCUSING
ON TELLING STORIES OF NIA
RESEARCH THROUGH SCIENCE WRITING
AND FEATURE ARTICLES.
AND HE'S ALSO CREATING AND
UPDATING SOME OF OUR HEALTH
INFORMATION ONLINE AND IN PRINT.
TONY JOINED NIA FROM NIH
NATIONAL INSTITUTE ON MENTAL
HEALTH, WHERE HE WAS ALSO A
WRITER.
NEXT PLEASE.
MORGAN MOORE IS A SOCIAL MEDIA
SPECIALIST, NEW TO OUR OUTREACH
AND DIGITAL ENGAGEMENT BRANCH.
AND SHE'S HELPING TO COORDINATE
OUR E-MAIL MARKETING EFFORTS,
MANAGING OUR SOCIAL MEDIA
CHANNELS, AND SUPPORTING OTHER
OUTREACH EFFORTS.
SHE'S ALSO DEVELOPING AND
UPDATING WEBSITE CONTENT.
MORGAN JOINED FROM TUXCARE, I.T.
RELATED, A SENIOR SOCIAL MEDIA
MANAGER.
AND EMMA MONTGOMERY IS IN OUR
DIGITAL COMMUNICATIONS -- I'M
SORRY, WEB AND DESIGN SERVICES
BRANCH, DIGITAL COMMUNICATIONS
SPECIALIST, LEADING OUR WEBSITE
DEVELOPMENT, MAINTENANCE, AND
COMPLIANCE EFFORTS.
SHE'S GUIDING STRATEGIC
COORDINATION WITH WEBSITE
STAKEHOLDERS, AND OVERSEEING WEB
USABILITY, USER EXPERIENCE
EFFORTS, AND SEARCH ENGINE
OPTIMIZATION PROJECTS.
EMMA JOINED FROM THE NATIONAL
CRIMINAL JUSTICE ASSOCIATION,
WHERE SHE WAS A DIGITAL CONTENT
MANAGER.
THANK YOU.
>> HELLO.
OKAY, GREAT.
HELLO, I'M PLEASED TO WELCOME
DR. KELLY PRINCE TO OFFICE OF
LEGISLATION POLICY.
IN THIS NEW ROLE SHE'S
SUPPORTING COORDINATION AND
EXPANSION OF OUR COMMUNITY OF
EXTERNAL PARTNERS, AS WELL AS
DEVELOPING PRESENTATIONS FOR NIA
LEADERSHIP AND SERVING AS OUR
OFFICES LIAISON WITH DIVISION OF
AGING BIOLOGY.
SHE JOINS FROM AMERICAN
ASSOCIATION FOR CANCER RESEARCH
WHERE SHE WAS ASSOCIATE DIRECTOR
FOR SCIENCE AND HEALTH POLICY
AND ALSO COMPLETED POSTDOC IN
NIA'S VERY OWN INTRAMURAL
PROGRAM IN DR. MICHELLE EVANS'
LAB.
WE'RE THRILLED FOR HER TO BE
HERE.
>> I'D LIKE TO INTRODUCE TO THE
OFFICE OF PLANNING AND
EVALUATION A SOCIAL SCIENCE
POLICY ANALYST, DR. AARON
OGLETREE, SUPPORTING PORTFOLIO
ANALYSIS.
PRIOR TO JOINING NIA AARON WAS A
SCIENTIFIC PROGRAM MANAGER
WITHIN NIMHD OFFICE OF SCIENCE
POLICY, PLANNING AND REPORTING,
HE MANAGED THE ONLINE DATA
RESOURCE, CO-LED NIMHD ANNUAL
PORTFOLIO ANALYSES, AND
DEVELOPED METRICS FOR EVALUATING
NIH-WIDE STRATEGIC PLAN, Ph.D.
IN HUMAN DEVELOPMENT AND FAMILY
SCIENCE FROM VIRGINIA TECH.
THANK YOU.
>> GOOD MORNING, I'M HAPPY TO
WELCOME A NEW MEMBER OF OUR
INTRAMURAL RESEARCH COMMUNITY AT
NIA, AND MONIQUE WALTERS,
INTRAMURAL SUPPORT ASSISTANT,
PREPARE TRAVEL AND SERVE AS TIME
KEEPER, JOIN FROM DIVISION OF
TECHNOLOGY AND RESOURCES AT NIH.
KENDALL VAN KUEREN-JENSEN,
SENIOR SCIENTIST FOR CARD,
BRINGS EXPERTISE IN TECHNOLOGY,
ESPECIALLY GENETIC TECHNOLOGY
AND SINGLE CELL TECHNOLOGY, NEW
GENOMIC APPROACH, AND WILL
IMPLEMENT SOME OF THESE
TECHNOLOGY CARDS TO JOIN US FROM
PROFESSOR POSITION, T-GEN,
COLLABORATOR WITH CITY OF HOPE
MEDICAL CENTER IN CALIFORNIA.
NEXT SLIDE PLEASE.
A BIOLOGIST, ALSO THROUGH THE
CENTER FOR RELATED DEMENTIA,
MOHAMMED EL ALLAM
AREA OF CNS CELL TYPE, WAS
CONTRACTING POSITION IN THE SAME
GROUP AND WAS HIRED AS
BIOLOGIST, HE WILL CONTINUE TO
DO THE EXCEPTIONAL WORK THAT HE
WAS ALREADY DOING.
NEXT SLIDE, SHANNON BLACK,
MEDICAL TECHNICIAN, JOINS US IN
CLINICAL CORE, WAS IN THE
HEALTHY AGING IN NEIGHBORHOODS
OF DIVERSITY ACROSS THE LIFESPAN
STUDY, WILL PROVIDE SUPPORT AS A
TECHNICIAN IN THE SAME STUDY.
THE NEXT SLIDE.
NEW INTRAMURAL SUPPORT ASSISTANT
IN THE LIBRARY OF EPIDEMIOLOGY,
JOINS FROM AMERICAN RED CROSS.
NEXT SLIDE.
A LAB MANAGER FROM LAB GENETIC
AND GENOMIC, WILL OVERSEE
PROCESS MANAGE A NUMBER OF
ADMINISTRATIVE NEEDS OF STAFF,
SHE JOINS FROM THE PROGRAM
MANAGER II POSITION WITHIN NIH
OFFICE OF THE DIRECTOR.
NEXT SLIDE, AN INTRAMURAL
SUPPORT ASSISTANT IN THE
LABORATORY OF NEUROGENETIC, SHE
WILL BE REALLY HANDLING A NUMBER
OF TASKS INCLUDING TRAVEL BUT
ALSO SOME RESPONSIBILITY THAT
DERIVES FROM NEEDS FROM SENIOR
MANAGEMENT.
SHE WAS PREVIOUSLY A DENTAL
HYGIENIST WITH THE VIRGINIA/DC
AREA.
NEXT SLIDE.
AND THE PROJECT SPECIALIST,
COMPUTER TECHNOLOGY SECTION, WAS
PREVIOUSLY A PROGRAM SPECIALIST
AT OFFICE OF UNITED STATES
COURTS, BRINGS NEW IDEAS, NEW
TECHNOLOGY IN I.T. AND SHE WILL
BE ALSO WORKENING ON THE
DEVELOPMENT A.I. TECHNOLOGY.
NEXT SLIDE.
GERONTOLOGY BRANCH, JOINS FROM
THE TEXAS SOUTHWESTERN MEDICAL
CENTER, VICTORIA IS BECOMING A
WORLD EXPERT IN CIRCADIAN
BIOLOGY, EMERGING IN AGING
BIOLOGY.
I CAN TELL YOU YESTERDAY WAS
NOMINATED DISTINGUISHED SCHOLAR,
BIG HONOR AT NIH, ALSO COMES
WITH, YOU KNOW, FUNDING THAT
WILL BE, YOU KNOW, CONSIDERABLE
FUNDING IN THE FIRST FIVE YEARS,
WILL HELP HER IN REALLY BUILDING
HER LAB AND STRENGTHENING THE
SCIENCE SHE'S DOING.
I THINK THIS WAS MY LAST SLIDE
FROM THAT ROUND.
YES.
>> THANK YOU, I HOPE YOU WERE
INFORMED AND IMPRESSED BY THE
SCOPE AND TALENT THAT WE ARE
BRINGING TO THE INSTITUTE, MUCH
NEEDED AS WE GROW AND OUR
MISSION EXPANDS.
FINALLY, EMPHASIZING OUR HOPE
YOU'LL STAY ENGAGED WITH US
BETWEEN COUNCIL MEETINGS.
THESE ARE SOME OF THE MANY SITES
AND OPPORTUNITIES.
IF YOU'RE NOT ON PRO-ACTIVE
MAILING LISTS, LET US KNOW AND
WE'LL MAKE SURE YOU ARE.
THANK YOU.
KEN, BACK TO YOU.
>> ALL RIGHT.
WE CAN OPEN UP FOR QUESTIONS FOR
DR. HODES.
FOR ALL THE UPDATES AND BUDGET
AND ANY OTHER ISSUES YOU MAY
HAVE.
>> THAT'S REALLY IMPRESSIVE TO
SEE THIS GROUP OF PEOPLE
JOINING.
THANK YOU FOR THE UPDATE.
THIS IS -- THIS REMINDED ME I'VE
BEEN MEANING TO ASK YOU THIS
QUESTION.
WITH COMMUNICATIONS, SOMETHING
AS LARGE AS A $4 BILLION
OPERATION, ARE THERE METRICS YOU
KEEP TRACK OF, OF HOW MANY
PEOPLE ARE ACTUALLY LOOKING AT
THE BLOGS OR LOOKING AT JOINING?
BECAUSE IT SEEMS THAT WOULD BE
PRETTY IMPORTANT WHETHER OR NOT
IT'S REACHING PEOPLE AT A LEVEL
THAT YOU THINK WOULD BE
SUCCESSFUL.
>> GREAT POINT.
GREAT QUESTION.
THE ANSWER IS YES.
WE CAN IN THE FUTURE PROVIDE
THOSE.
IN FACT WE CAN FOLLOW UP IN THE
SHORT TERM.
I KNOW CINDY IS ON.
>> YES, I AM.
YES, WE ABSOLUTELY VERY
CAREFULLY MONITOR ANALYTICS,
MONITORING THOSE AND ANALYZING
THOSE ARE A BIG PART OF HOW WE
CONDUCT OUR STRATEGIC
COMMUNICATIONS PLANNING.
AND I WOULD BE MORE THAN HAPPY
IN THE FUTURE TO PROVIDE SOME OF
THOSE ANALYTICS.
>> THANK YOU, CINDY.
WE DON'T NEED TO WAIT TILL NEXT
COUNCIL.
WE CAN PUT SOMETHING TOGETHER
AND SEND IT OUT TO COUNCIL
MEMBERS.
>> ABSOLUTELY.
>> THANKS, CINDY.
>> [OFF MICROPHONE]
(INAUDIBLE ]
THAT INFORMATION THAT COMES FROM
NIA --
>> THANK YOU SO MUCH FOR THE
COMMENT AND SUGGESTION.
MAYBE WE CAN ASK YOUR HELP IN
UNDERSTANDING WHICH IF NOT ALL
OF THE COMMUNICATIONS WE PUT
FORWARD CAN BE DISTRIBUTED AND
YOUR HELP IN SHARING WHAT YOU
THINK ARE THE BEST E-MAIL
RECIPIENT LISTS.
>> ABSOLUTELY.
>> AMERICAN ASSOCIATION OF
PHYSICIAN, NATIONAL INDIAN
HEALTH BOARD, I WOULD START WITH
INDIAN HEALTH SERVICE, SO THERE
ARE A NUMBER OF PLACES.
CARINA WALTER IS A GREAT
RESOURCE, CAN TELL YOU MORE.
IN ADDITION TO SENDING
INFORMATION TO ACADEMIA, YOU
KNOW, TRAVEL CONSUMER I THINK
WOULD BE A GREAT PLACE TO GO.
INFORMATION IS REALLY AWESOME.
>> GREAT SUGGESTION.
THANK YOU.
WE'LL FOLLOW UP.
>> THANKS.
>> THANKS FOR THE REPORT.
YOU MENTIONED A CAPITOL HILL
BRIEFING TOMORROW.
IS IT TOMORROW?
>> YES.
IT'S A HEARING, NOT BRIEFING.
DISTINCTION IS MAYBE LOST ON YOU
BUT NOT ON US.
>> WHAT TIME?
>> I BELIEVE IT STARTS AT 10:00.
>> IS IT OPEN TO THE PUBLIC?
>> IT IS.
IN FACT, WE CAN SEND YOU ALL
INFORMATION.
THE HEARING, A GROUP OF US WILL
BE LEAVING FROM NIH AT 7:55 TO
MAKE SURE WE'RE THERE IN TIME.
>> RICHARD, A COUPLE POINTS.
IN TERMS OF THE MONEY THAT YOU
GOT FOR PALLIATIVE CARE, I
ASSUME A LOT -- IS IT FOR MOST
OF THE MAJOR DISEASES OR IS IT
FOCUSED TOWARD ADRD?
>> GREAT QUESTION.
IT'S BROAD SPECIFICALLY IN THE
LANGUAGE THAT COMES WITH THIS
FUNDING, IN THIS FISCAL YEAR FOR
PALLIATIVE CARE, TARGETED AT THE
ESTABLISHMENT OF PALLIATIVE CARE
CONSORTIUM OF AT LEASE THREE
SITES TO COORDINATE EFFORTS
ACROSS NIH.
NIA HAS BEEN DESIGNATED TO LEAD,
AMY KELLEY HAS BEEN A LEADER
ACROSS INSTITUTES AND DISEASE
ORIENTATION AS WELL AS LIFE
COURSE ORIENTATION, MAKE THIS A
VERY BROAD EFFORT WITH NIA
TAKING A LEAD, BY NO MEANS THE
WHOLE PARTICIPANT.
>> THE OTHER THING WAS IN THE
AREA OF REAL WORLD DATA, REAL
WORLD EVIDENCE RESEARCH, I SAW
SOME INFORMATION THERE THAT
PERHAPS YOU RECRUITED SOME
PEOPLE IN THAT AREA TO DEAL WITH
THAT DATA.
AND OF COURSE WE HEARD FROM THE
FDA COMMISSIONER, THE MOST
RECENT MEETING, FOCUSED IN THAT
AREA, WONDER IF YOU COULD SHARE
SOME PLANS ABOUT EXPANSION OF
WORK IN THAT AREA AND WHETHER
THERE COULD BE COLLABORATION
WITH FDA ON THAT SIDE.
>> ABSOLUTELY.
REAL WORLD DATA AND RESEARCH
USING REAL WORLD DATA CRITICAL
TO OUR EFFORTS TO UNDERSTAND AN
INCLIVE INCLUSIVE AND
COMPREHENSIVE, TO WORK TOWARD
THE AIM OF THE OPTIMIZING
HEALTH.
THERE HAVE BEEN A NUMBER OF REAL
WORLD DATA INITIATIVES THAT NIA
SUPPORTED ALREADY, REMARKABLY
EFFECTIVE, INCLUDED THINGS LIKE
THE IMPACT COLLABORATORY,
WORKING THROUGH THE NIH HEALTH
SERVICES COLLABORATORY, AND
INTENT CERTAINLY TO CONTINUE
THESE EFFORTS BUT IMPORTANTLY TO
BE DOING THESE IN THE CONTEXT OF
THE INCREASED NUMBER OF
EXTENSIVE LARGE DATA EFFORTS
THAT ARE NOW NIH-WIDE AND
DEPARTMENT-WIDE.
SO PART OF THE ANSWER TO THE
SPECIFIC QUESTION, WE INTEND TO
CONTINUE THESE AREAS CLOSE
CONSULTATION WITH LEADERSHIP FOR
OFFICE OF DATA SCIENCE AND NIH
AND WITH MONICA BERTAGNOLLI
HERSELF BECAUSE THIS IS AN AREA
OF INTEREST TO HER.
WE'RE GOING FORWARD IN THIS
AREA, HOPE TO DO OUR BEST TO
OPTIMIZE WHAT WE'RE DOING AND
CONTRIBUTING IN PART TO THE NIH,
HHS, FEDERAL GOVERNMENT-WIDE
EFFORTS IN THIS IMPORTANT AREA.
>> THANK YOU.
>> ANY OTHER QUESTIONS?
>> THIS IS BIG PICTURE QUESTION.
IN TERMS OF -- I DON'T KNOW MUCH
ABOUT THE AREA, BUT I KNOW SOME
ASPECT, THERAPEUTIC AREA --
(INAUDIBLE).
NOW IT'S ON.
THANK YOU.
WONDERING ABOUT ENGAGEMENT WITH
FDA AND THERAPEUTIC CONTEXT OF
AGING, WHAT'S AMENABLE TO
THERAPEUTICS, WHAT'S NOT, MAYBE
EVERYTHING IS.
YOU KNOW, IS THERE A SPECTRUM
LIKE SARCOPENIA I GUESS COULD BE
THERAPEUTICALLY TREATED, DRUGS
COULD BE DEVELOPED FOR THAT IF
THAT'S POSSIBLE AS MECHANISMS
ARE ELUCIDATED.
AGE-ASSOCIATED COGNITIVE CHANGES
IS NOT A DISEASE SO THERE'S NO
TREATMENT STRATEGY, I DON'T KNOW
IF THAT'S TRUE, DO YOU GET
INVOLVED IN THAT BIG PICTURE
THERAPEUTICS AND AGING?
>> THANKS FOR THAT QUESTION.
OVER THE YEARS WE'VE HAD
MULTIPLE MEETINGS WITH STAFF
FROM FDA, TO DISCUSS THESE KINDS
OF QUESTIONS.
MY OWN SENSE IS OVERALL THEY
HAVE BEEN VERY RECEPTIVE AND
UNDERSTANDING FOR OUTCOMES
CLINICALLY MEANINGFUL, WHETHER
DISEASE SPECIFIC OR BROADER IN
THEIR DETERMINATION, THEY ARE
OPEN AND RECEPTIVE AND THEY
PUBLISHED THEIR GUIDELINES WHICH
WE'VE SHARED.
HAPPY TO SHARE FURTHER WITH YOU
THE CONVERSATIONS WE'VE HAD.
THERE HAVE BEEN THOSE THAT FOUND
IT DIFFICULT TO FIND A HOME AT
FDA BECAUSE WHAT WE DEAL WITH IS
SO BROAD.
WE'VE HAD GROUPS REPRESENTING
DISCIPLINES, ENDOCRINOLOGY,
MUSCULOSKELETAL, AS A WHOLE,
RECEPTIVE TO PROPOSALS WITH
MEANINGFUL OUTCOMES TO THEY ARE
MUTICS WITHOUT BEING BOUND BY
LABELS, PER SE.
IT'S FRUSTRATING, HASN'T BEEN
EASY BUT YES WE'VE BEEN AND WILL
CONTINUE TO BE ENGAGED WITH
THEM.
>> THERAPEUTIC DOESN'T HAVE TO
BE ANCHORED BY A DISEASE PER SE.
IT'S CLINICAL MEANINGFULNESS, I
IMAGINE WITH THAT IS QUALITY OF
LIFE.
>> YES, AGAIN, THESE ARE
ANECDOTAL CONVERSATIONS WE'VE
HAD.
BUT THAT'S BEEN VERY MUCH THE
EMPHASIS.
CLINICALLY MEANINGFUL OUTCOMES
THAT CAN BE MEASURED,
QUANTIFIED, IN SUCH A WAY THAT
PROVIDES EVIDENCE BASE FOR
APPROVAL OF INTERVENTIONS.
THEY ARE OPEN TO THIS.
>> THAT'S GOOD TO KNOW.
THANK YOU.
>> I DON'T KNOW IF -- EVAN
HADLEY, IF YOU'RE ON, HE'S BEEN
PART OF THE CONVERSATIONS.
DID YOU WANT TO AMPLIFY ON THAT
AT ALL?
SORRY TO PUT YOU ON THE SPOT,
NOT SURE EVAN WAS ABLE TO STAY
ON.
>> I THINK IT'S GREAT YOU HAVE
THAT ONGOING ENGAGEMENT WITH THE
FDA.
I THINK THE NIA IS A KEY
IMPORTANT PART OF THAT.
>> RICHARD, ANY PROGNOSIS
WHETHER FDA IS GOING TO ADOPT
ANY OF THE ACROSS-THE-LIFESPAN
APPROACHES TO RESEARCH THAT NI A
AND NIH HAVE ADOPTED?
I HAVEN'T SEEN ANYTHING ON THAT
FRONT, I WATCH CLOSELY.
THEY REALLY HAVE SORT OF BEEN
DRAGGING THEIR HEELS ON THE IDEA
THAT RESEARCH SHOULD REPRESENT
THE SPECTRUM OF OUR LIFESPAN AND
NOT SORT OF HAVE THESE CUTOFFS,
AGE-BASED CUTOFFS.
>> I THINK THE QUESTION ABOUT
CUTOFFS ACTIVITY, AGE
SPECIFICITY IN RESEARCH IS
REALLY -- IS NOT FDA PURSUE SO
MUCH AS NIH.
IF THE QUESTION IS DIRECTED TO
WHETHER FDA SHOULD INSIST ON AGE
INCLUSION, I THINK, YOU KNOW,
THE SEPARATE AGENCY, I DON'T
HAVE ANY FURTHER INSIGHTS WHAT
THEY ARE DOING BUT I THINK I
WANT TO EMPHASIZE RESPONSIBILITY
WE ARE IN THIS REGARD, AND
THERE'S A LONG HISTORY OF
EXCLUSION BY AIMING WITHOUT
JUSTIFICATION OR PURPOSE, AND
IT'S CLEARLY INTOLERABLE.
I CAN SHARE CONVERSATIONS I'VE
HAD WITH LEADERS OF OTHER
INSTITUTES, FOR EXAMPLE, ABOUT
SOME OF THE SUBTLETIES.
SO INCLUSION ACROSS THE AGE
RANGE WITHOUT LIMITS IN EVERY
STUDY IS ONE SUGGESTION.
BUT THERE ARE SUBTLETIES OR
SPECIFICATIONS RAISED, FOR
EXAMPLE IN CONDUCT FOR
CROSS-SECTIONAL STUDY MAYBE
NOTABLE BUT FOR LONGITUDINAL
STUDIES THERE ARE THOSE CASES
WHICH THE ARGUMENT HAS BEEN MADE
THAT BEGINNING AT EARLIER AGE
BEFORE OVERT PATHOLOGY AND BEING
COMMITTED TO LONGITUDINAL STUDY
INTO OLDER AGE IS THE MOST
EFFECTIVE COST EFFICIENT AS WELL
RESEARCH STRATEGY TO ENGAGE OVER
LIFESPAN.
OUR HACKLES GO UP TOO, AGE
CUTOFF AT X.
BUT LOOKING RIGOROUSLY AT WHAT
THE JUSTIFICATION MAY BE, WE'RE
OPEN TO WHAT OPTIMIZES IN THE
END RESEARCH THAT WILL INFORM
WHAT THE BEST APPROACHES,
CONDITIONS TO AFFECT PEOPLE IN
OLDER AGE.
YOUR QUESTION WAS WITH RESPECT
TO FDA AND THEIR APPROVAL.
WHETHER FOR INDICATIONS OF A
THERAPY AT A GIVEN AGE RANGE,
THEY ARE WILLING TO APPROVE IF
THAT'S WHERE THE RESEARCH LIES,
I DON'T KNOW IF IT'S SO MUCH
REGULATORY ROLE TO SAY WE WON'T
ACCEPT AS FOR US TO PROVIDE
SUPPORT, THE RESEARCH, WHICH
WILL LEAD THEM IN THE FDA
APPROVALS SPECIFYING ELIGIBILITY
TO HAVE THE AGE BASIS FOR THEIR
RECOMMENDATIONS.
>> I RECOGNIZE THERE DIFFERENT
AGENCY AND APPRECIATE WHAT NIH
HAS DONE WITH THE LEADERSHIP OF
NIA AND THE FOLKS, INSTITUTES
AND POLICIES THAT PLACE EMPHASIS
ON THE LIFESPAN, AGE SPAN, AS
YOU WERE.
WHAT I WORRY ABOUT WITH THE FDA
IS THAT WAS SORT OF -- THAT WAS
AN AGENCY-WIDE DIRECTIVE FROM
CONGRESS THAT EVERY AGENCY
SHOULD BE THINKING ABOUT
LIFESPAN POLICIES.
AND FDA AS FAR AS I CAN TELL TO
DATE DOES NOT PAY MUCH ATTENTION
TO INCLUSION OF OLDER ADULTS
WHEN IT'S GOING THROUGH ITS
APPROVAL PROCESS.
SO I THINK THE HACKLES GOING UP,
I APPRECIATE THAT BECAUSE I
THINK THAT'S WHAT HAPPENS WITH
AGS AND OUR LEADERS IS THAT
DRUGS GET APPROVED AND THEN THEY
GET ROLLED OUT IN A POPULATION
THAT THEY HAVE NEVER BEEN TESTED
IN AND THAT POPULATION IS THE
BIGGEST USER OF THOSE DRUGS.
SO I THINK REALLY IF THERE'S
ANYTHING IN THE INTERAGENCY
DELIBERATIONS AND CONVERSATIONS
THAT YOU HAVE THAT COULD HELP TO
CONVEY TO FDA HOW IMPORTANT THAT
IS TO THE COMMUNITY, THAT WE
START TO SEE THAT INCLUSION IN
THESE APPROVALS THAT WOULD BE
GREAT FROM MY PERSPECTIVE.
I RECOGNIZE I'M THINKING ABOUT
THE TIME TOGETHER AS AGENCY HAS
WHERE THESE CONVERSATIONS MIGHT
BE HAD AND JUST AS SOMEBODY
QUIPPED ABOUT ME, I HAVE TALKING
POINTS, THIS IS ONE OF THEM, I
WILL SAY AT ANY TIME.
>> THANK YOU FOR THE PROMPT.
WHEN THERE ARE OPPORTUNITIES OF
INTERACTION WE'LL PURSUE.
WE HAVE OUR RESPONSIBILITY IN
RESEARCH WE SUPPORT BUT THAT'S
NOT THE ONLY RESEARCH THAT
SUPPORTS FDA DECISIONS.
SO THE INFLUENCE OF THEIR
POLICY ON NOT JUST FEDERALLY
FUNDED RESEARCH BUT BROADER
RESEARCH WOULD HAVE UNIQUE
SIGNIFICANCE, AGREED.
>> ALL RIGHT.
THANK YOU VERY MUCH FOR THE
DISCUSSION.
WE'LL MOVE ON.
NEXT UP IS JUST ANNOUNCEMENT OF
FUTURE MEETING DATES.
YOU'LL SEE AGAIN WE'LL BE
MEETING IN PERSON ON WEDNESDAY,
SEPTEMBER 18, AND THURSDAY,
SEPTEMBER 19.
THIS TIME IT WILL BE IN BUILDING
31, THE CONFERENCE ROOM, A
DIFFERENT VENUE THAN HERE AT
NATCHER, BETTER CAFETERIA, THANK
GOD.
AND WE'LL WORK SOMETHING OUT TOO
BECAUSE SEPTEMBER IS USUALLY OUR
BUSY COUNCIL MEETING WITH LOTS
OF NEW INITIATIVES THAT WILL BE
PRESENTED.
SO WE'LL WORK WITH YOU ON THAT.
AND THEN IN 2025, OF COURSE,
JANUARY 28 AND 29 IS OUR JANUARY
COUNCIL MEETING, WHICH IS
VIRTUAL AS ALWAYS.
WHICH THEN WE'LL BE MOVING TO
MAY 13 AND 14 OF 2025, AND
SEPTEMBER 17 AND 18.
SO PLEASE MARK YOUR CALENDARS
FOR THOSE.
WE HAVE NATCHER BOOKED FOR THOSE
MEETINGS RIGHT NOW BUT AS
RICHARD MENTIONED EARLIER OUR
EXTRAMURAL STAFF AND PROGRAMS
WILL BE ALL MOVING TO A NEW
BUILDING IN THE SUMMER TO
FISHERS LANES IN CONJUNCTION
WITH NIAID WHO IS HOUSED IN THE
SAME BUILDING.
IT'S A PRETTY BRAND NEW
BUILDING, HAS A COMPLETELY
RENOVATED AND NEW CONFERENCE
CENTER IN THOSE BUILDINGS SO
WE'RE HOPING TO BE ABLE TO USE
THAT BUILDING FOR OUR MEETINGS
IN THE FUTURE.
IT WILL BE A GREAT SPOT FOR
EVERYONE.
IN YOUR ELECTRONIC COUNCIL BOOK
MINUTES FROM MEETING OF JANUARY
2024
I'LL MAKE A MOTION TO APPROVE
THOSE MEETING MINUTES FROM THE
LAST TIME, UNLESS ANYONE HAS
CORRECTIONS OR COMMENTS ON THOSE
MINUTES.
MOVE TO APPROVE.
SECOND.
ALL IN FAVOR.
ANY OPPOSED.
WE HAVE APPROVAL OF OUR MINUTES
FROM THE JANUARY 2024 COUNCIL.
THANK YOU VERY MUCH.
NEXT WE ARE RESURRECTING
SOMETHING THAT WE HAVEN'T DONE
IN A LONG TIME, CERTIFICATES OF
APPRECIATION FOR RETIRING
MEMBERS OF COUNCIL, SO A SMALL
PRESENTATION FOR PEOPLE
RETIRING.
WE HAVE THREE GOING OFF COUNCIL
THIS ROUND, DOCTORS MANLEY AND
WEIR, CHARLOTTE, DR. PETERSON
WILL ALSO BE RETIRING THIS
ROUND.
RICHARD, IF YOU WANT TO HAVE
THOSE.
OKAY.
>> OLD SCHOOL, REAL CERTIFICATES
AND PRESENTED IN PERSON.
CAN YOU SAY A FEW WORDS IF YOU'D
LIKE.
WELL, COME OVER, HOW ABOUT IT?
JENNIFER MANLY SERVED ON COUNCIL
MOST ABLY, PREVIOUSLY BOARD OF
SCIENTIFIC COUNSELORS, ALMOST OF
COURSE WE DO WITH ENERGY, WITH
PERSPECTIVE THAT KEPT US ON OUR
TOES AROUND HER, IN THE MOST
POSITIVE WAY.
WE'LL MISS YOU AND MOST
CERTAINLY WILL NOT ALLOW YOU TO
ESCAPE, WE'LL INVOLVE YOU IN
FUTURE EFFORTS.
HERE IS A WONDERFUL REAL PRINTED
...
>> I'M GOING TO MISS ALL OF YOU
TOO.
IT'S BEEN A PLEASURE AND I'VE
LEARNED SO MUCH.
I REALLY HAVE LOVED MY TIME ON
COUNCIL.
IT'S WONDERFUL WHEN YOU CAN SAY
THAT, YOU KNOW, SERVICE LIKE
THIS TO NIA HAS BROUGHT SO MUCH
MORE KNOWLEDGE AND NEW FRIENDS,
NEW RELATIONSHIPS WITH PEOPLE
WHOSE WORK I HAVE A WHOLE NEW
APPRECIATION FOR.
SO, THANK YOU SO MUCH.
>> NEXT DAVID WEIR.
DAVID HAS HAD ALSO, AS FOR EACH
OF YOU, ENORMOUSLY IMPACTFUL
CAREER, LEADERSHIP IN AREAS OF
POPULATION SCIENCE, COGNITION
AND OTHER AREAS, HRS, MODEL FOR
POPULATION-BASED RESEARCH,
SERVED US WELL, GENEROUS WITH
TIME, SO MANY NIH-SUPPORTED
FUNCTIONS INCLUDING COUNCIL.
WE'LL MISS YOU AND ASK YOU TO
SAY A FEW WORDS TO US.
>> THANK YOU, IT'S BEEN A
TREMENDOUS EXPERIENCE TO GET TO
KNOW PEOPLE ON COUNCIL BUT ALSO
PEOPLE AT NIA, GAINED A BETTER
APPRECIATION OF DEPTH AND
BREADTH OF WORK, DEEPER AND
BROADER EVERY DAY IT SEEMS.
PROJECT I WORK ON MAINLY IS
COOPERATIVE AGREEMENT.
IT'S BEEN A WONDERFUL LEARNING
EXPERIENCE AND I'M JUST GLAD TO
BE PART OF AN ORGANIZATION
THAT'S SO FORWARD LOOKING AND
JUST A TERRIFIC SCIENTIFIC ENTI.
THANK YOU.
>> AND CHARLOTTE.
RESEARCH SPANNED BASIC MECHANISM
THROUGH FUNCTION, WORKING WITH
COMMON FUND AROUND MoTrPAC,
SPANS OUR DIVISION AND RESEARCH
DISCIPLINES, ALL OF THAT AND
MORE, WE THANK YOU AND ASK YOU
TO SAY A FEW WORDS TO US.
>> THANKS.
THIS HAS BEEN A PLEASURE.
I'M SORRY I'M LEAVING AFTER ONLY
THREE YEARS BUT IT HAS BEEN SO
CLOSELY INVOLVED WITH BAB, ALSO
WITH CLINICAL GERONTOLOGY
PROGRAM OFFICERS, SO SUPPORTIVE
THROUGH THE YEARS BUT NOW THEY
GET TO SEE THE BIG PICTURE AND
HOW HARD EVERYBODY WORKS IN THE
WONDERFUL WORK THAT NIA DOES,
ENLIGHTENING, APPRECIATE HOW
HARD AND WHAT A WONDERFUL JOB
NIA IS DOING.
I HOPE I'LL BE ABLE TO COME BACK
IN THE FUTURE.
I DO THANK YOU.
IT'S BEEN WONDERFUL.
>> THANKS TO EACH.
YOU'LL BE MISSED.
YOU SAID STANDARDS, HIGH BARS.
YOU CAN CONTINUE AND I HOPE WILL
BE AMBASSADORS AND EDUCATORS TO
THE COMMUNITY, WHAT GOES ON AT
COUNCIL, IMPORTANT THAT YOU
SERVED, AND INSIGHTS YOU SHOULD
BE MORE THAN FREE TO SHARE.
WE'RE HERE TO WORK WITH AND
SERVE THE COMMUNITY.
THAT PLUS ANY OF THE WORKS YOU
MAY FIND ON THE SYSTEM, PLEASE
DO SHARE WITH US AND THE
RESEARCH COMMUNITY AS WELL.
YOU'LL BE MISSED.
WE'VE GOT YOU FOR A FEW MORE
HOURS.
>> ALL RIGHT.
I ALSO WANT TO EXTEND MY
GRATITUDE AND THANKS TO THE
RETIRING MEMBERS.
YOU'LL BE SORELY MISSED.
WE GREATLY APPRECIATE YOUR
EXPERTISE AND HONESTY THAT YOU
BRING TO THE COUNCIL AND
ADVISORY, TO OUR INSTITUTE, IT'S
BEEN A PLEASURE WORKING WITH YOU
ALL.
OKAY.
SO NEXT UP, OKAY.
WE'LL JUST -- WELL, THE FIRST
UP, WE'LL BE DOING OUR REPORT ON
THE TASK FORCE FOR MINORITY
AGING.
I'LL TURN IT OVER TO PATRICIA
AND THE CHAIRS.
>> THANK YOU AND GOOD MORNING.
I'LL QUICKLY PIVOT TO OUR
CO-CHAIRS, YESTERDAY'S
CONVERSATION WAS THOUGHT
PROVOKING AND THEY WILL DO A
FANTASTIC JOB SUMMARIZING KEY
POINTS AND TAKEAWAYS.
I WANT TO ACKNOWLEDGE KEN FOR
GIVING ADDITIONAL FEW MINUTES TO
ENGAGE IN FURTHER CONVERSATION.
THAT'S A GIFT AND WE APPRECIATE
IT.
THANK YOU.
>> THANK YOU, DR. JONES.
THANK YOU, KEN.
DO YOU HEAR ME?
OKAY.
ALL RIGHT.
THANK YOU FOR THE EXTRA MINUTES
YESTERDAY.
IT WAS INDEED A TERRIFIC
SESSION.
I WAS INSPIRED, LEFT THINKING
ABOUT WHAT WE HEARD DURING
YESTERDAY'S SESSION.
AND AS YOU WILL RECALL WE
STARTED WITH DR. JONES OPENING
REMARKS, MADE ANNOUNCEMENTS
WORTH REPEATING.
THERE'S THE 2024 BUTLER-WILLIAMS
SCHOLAR PROGRAM, WILL BE
CONVENING IN AUGUST, COMING UP.
SHE ALSO REMINDED US ABOUT THE
STRUCTURAL RACISM WORKSHOP
THAT'S HAPPENING IN JULY, AND
REGISTRATION IS COMING UP.
SHE ALSO REMINDED US ABOUT THE
DOMAIN OF THE TASK FORCE.
AND THAT WE HAD DRIVEN BY THREE
DOMAINS, SCIENCE OF INCLUSION
FIRST, THE SCIENCE OF
ELIMINATING HEALTH DISPARITIES
SECOND.
AND THIRDLY, METHODS USED TO
EXAMINE THE HEALTH OF
MINORITIZED POPULATIONS.
I THOUGHT THAT WAS AN IMPORTANT
REMINDER THAT WAS GIVEN TO US BY
DR. JONES.
WE HEARD FROM DR. TURNER, DR.
ROBERT TURNER, AND HE IS
CONDUCTING ADRD AND AGING
RESEARCH WITH BLACK MEN FROM A
LIFE COURSE PERSPECTIVE.
HE'S AN ASSISTANT PROFESSOR
WITHIN THE DEPARTMENT OF
NEUROLOGY AT GEORGE WASHINGTON
UNIVERSITY, MY ALMA MATER.
HE TALKED TO US ABOUT HOW SPORT
PARTICIPATION INFLUENCED BRAIN
HEALTH.
HE DESCRIBED SELF-IDENTIFIED
BLACK MEN'S EXPERIENCE WITH
BRAIN HEALTH IN AGING RESEARCH.
HE TALKED TO US ABOUT STRATEGIES
TO FACILITATE SELF-IDENTIFIED
BLACK MEN PARTICIPATION IN BRAIN
HEALTH AND AGING.
HE ALSO TALKED ABOUT RECRUITMENT
AND ENGAGEMENT ELEMENTS THAT
FACILITATE RETENTION OF
SELF-IDENTIFIED BLACK MEN AND
SPECIFICALLY IN BRAIN HEALTH AND
AGING RESEARCH.
HE TALKED TO US ABOUT THE BLACK
MEN'S EXPERIENCE IN AGING
RESEARCH.
HE SHARED BLACK MEN ARE
UNDERREPRESENTED IN ADRD
RESEARCH, BUT THAT THEY ARE
WILLING TO PARTICIPATE IN
RESEARCH.
AND THAT THE FACTORS INFLUENCING
THEIR LACK OF PARTICIPATION IS
PARTIALLY DUE TO THE FACT THAT
BLACK MALE PLAYERS IN THIS CASE
SAID THEY HAVE NEVER BEEN ASKED,
THEY THINK NOBODY CARES ABOUT
THEM.
HE REMINDED US THAT IT IS
CRITICALLY IMPORTANT TO CREATE
AN ENVIRONMENT WHERE THEY FEEL
THEY ARE BEING LISTENED TO.
BLACK MEN FEEL MORE COMFORTABLE
PARTICIPATING IN RESEARCH WITH
INVESTIGATORS WHO LOOK LIKE
THEM.
TO HELP THEM IMPROVE PARTICIPANT
INVOLVEMENT AMONG AFRICAN
AMERICANS, AND BLACK MEN IN
PARTICULAR, IT IS IMPORTANT TO
EXPRESS A GENUINE INTEREST AND
RESPECT FOR THE POPULATION.
WHEN ASKED WHAT CAN INSTITUTIONS
DO TO ENGAGE MORE BLACK MEN IN
RESEARCH, DR. TURNER RESPONDED
AND HIGHLIGHTED THE IMPORTANCE
OF HAVING COMMUNITY PERSPECTIVE
INFORM THE SCIENCE.
I THOUGHT THAT WAS VERY
INTERESTING AND IMPORTANT.
HE URGED US TO GO INTO THE
COMMUNITY WHERE BLACK MEN ARE
AND ASK MEMBERS OF THE COMMUNITY
TO GET INVOLVED.
GET TO KNOW THEIR CULTURE, TO
UNDERSTAND WHAT IS IMPORTANT TO
THEM.
IT'S IMPORTANT TO LET BLACK
PARTICIPANTS SEE THEY ARE MAKING
THEIR COMMUNITIES BETTER AND
STRONGER.
THOSE ARE SOME HIGHLIGHTS OF HIS
PRESENTATION.
WE THEN MOVED TO -- I CAN
CONTINUE OR DO YOU WANT TO GO?
>> I CAN TALK ABOUT JAIME, WHO
DISCOVERED THE THE COMMUNITY
ENGAGED RESEARCH EXPERIENCES
WITH LATINOS IN ADRD RESEARCH.
HE'S ASSISTANT PROFESSOR AT
KANSAS, A DIRECTOR OF LATINO
HEALTH, BRAIN HEALTH LAB,
CO-DIRECTOR FOR BRAIN HEALTH,
ASSISTANT DIRECTOR OF INCLUSIVE
AT KU RESEARCH CENTER.
DISCUSSED THREE THINGS FOR HIS
PRESENTATION, DISCUSSED
DISPARITIES IN ADRD AMONG
LATINOS, HE DISCUSSED MODELS
EMPLOYING COMMUNITY ENGAGEMENT
AND LESSONS LEARN.
FOR THE MODELS HE LOOKED AT HIS
ENGAGEMENT MODELS WHICH CENTER
AROUND PARTICIPANT AND
RELATIONSHIP CENTERED RESEARCH,
CULTURAL ACCOMMODATION MODEL,
AND TEXT USER DESIGNED MODEL.
WITH DISPARITIES, HE TALKED
ABOUT FOUR DIFFERENT THINGS,
KNOWLEDGE, RISK, DETECTION AND
CARE, RESEARCH PARTICIPATION,
EACH BEING IMPORTANT IN ADRD AND
LATINOS.
EACH OF THOSE HE DISCUSSED A
LITTLE BIT FIRST ABOUT LOW
LEVELS OF KNOWLEDGE FOR INSTANCE
MANY THINK THAT MEMORY LOSS IS
NORMAL IN AGING, BOTH IN WHITES
AND LATINOS, BUT MORE SO IN
LATINOS, SIGNIFICANTLY MORE.
AND THEN HE SHOWED THERE WAS LOW
RESEARCH PARTICIPATION IN DRUG
TRIALS IN LATINOS COMPARED TO
WHITES.
HE ALSO SHOWED THAT LATINO ADRD
CAREGIVERS HAVE LOW ACCESS TO
SUPPORT AND MORE DEPRESSION THAN
WHITES.
AND HE SHOWED LATINOS HAVE
HIGHER UNINSURED LESSER ACCESS
AND ATTAINMENT OF EDUCATION,
LOWER HOUSEHOLD INCOME AND
HIGHER POVERTY RATES.
HE SHOWED THEIR FEAR OF
DEPORTATION BEING QUITE HIGH.
HE SHOWED HIGH LEVELS OF
INTERPERSONAL DISCRIMINATION,
AND A LARGE LANGUAGE BARRIER,
ALL REALLY CONTRIBUTING TO THIS
DISPARITY IN RESEARCH AND IN
HEALTH.
HE SHARED SOME CULTURAL ELEMENTS
ALSO SUCH AS THE NEED OF THE
WARM INTERACTION AND DEMENTIA
MAYBE BEING CONSIDERED A
WEAKNESS IN MALES.
HE SHOWED COMMUNITY ENGAGED
RESEARCH FRAMEWORKS USING HIS
RESEARCH INCLUDING THE
PARTICIPANT RELATIONSHIP
RESEARCH, STRESSED BIDIRECTIONAL
RESEARCH AND CULTURAL
ACCOMMODATION MODEL, EXAMPLE
WOULD BE NOT REQUIRING SOCIAL
SECURITY NUMBER FOR INSTANCE
BECAUSE OF FEAR OF DEPORTATION.
STRESSED USER DESIGNED --
USER-CENTERED DESIGN,
INTERACTION IN USER FRIENDLY
ACCESSIBLE WAY GOING TO THEIR
SPACES, TAILORING OUR LANGUAGE
TO THEIR CULTURE.
FINALLY HE SHOWED US HIS WORK ON
THE TEST MESSAGING INTERVENTION,
AND HE USES THIS TEXT METHOD,
HAS AN R21 TO LOOK AT THE
DEVELOPMENT OF THIS TEXT
MESSAGING TO SUPPORT LATINO
DEMENTIA FAMILY CAREGIVERS.
HE'S NOTED LIMITATIONS
ASSOCIATED WITH USING THIS TEXT,
SHOWED GREAT PARTICIPATION IN
GREAT RESPONSE TO TEXTS HE WAS
SENDING, AND THE PEOPLE IN THIS,
PART OF HIS STUDY, ENJOYED
GETTING THESE TESTS AND FELT
MUCH BETTER IN MULTIPLE RESPECTS
BUT ALSO DID NOTE LIMITATIONS,
TURNOVER COMMUNITY LEADERS
AFFECTED SUSTAINABILITY OF THE
PROJECT, LACK OF BANDWIDTH
RESOURCES, LACK OF
SUSTAINABILITY OF FUNDING,
BECAUSE IT RELIES ON RESEARCH
GRANTS WHICH IS A CONTINUED
DIFFICULTY WHEN WE GO OUT TO
COMMUNITIES THAT ARE SPONSORED
BY GRANTS IF WE END SOMETHING.
HE TALKED ABOUT THAT.
LIMITED TIME BECAUSE OF
SCHEDULES, LIMITED DIVERSITY,
VOICES IN THE WORKING GROUP, A
LOT OF PEOPLE ARE AFRAID TO
SPEAK UP.
AND THEN HE DISCUSSED WHAT HE
WOULD DO DIFFERENTLY.
AND A COUPLE THINGS ALSO GO
ACROSS DIFFERENT RACIAL/ETHNIC
MINORITIES, CO-CREATING RESEARCH
QUESTIONS ASKING THE COMMUNITY
WHAT THEY WANT TO LEARN.
INTEGRATING ENGAGEMENT
ACTIVITIES WITHIN GRANT AFTER
INTERVENTION ENDS WHICH I
ALREADY DISCUSSED IS REALLY
IMPORTANT.
AND ENGAGING MORE OF THE
COMMUNITY ADVISORY BOARDS ON HOW
DO WE RETAIN AND HOW DO WE
DISSEMINATE FINDINGS, INTERPRET
FINDINGS, AND EXPLORING WAYS TO
CREATE SUSTAINABILITY IN
COMMUNITY PARTNERSHIPS BEYOND
THE GRANTS THAT WE HAVE.
AFTERWARDS WE DID DISCUSS AT BIT
GOING ON, DR. TURNER'S WORK,
ABOUT THE MALE PARTICIPATION
BECAUSE THERE'S VERY FEW MALE
CAREGIVERS IN THE LATINO WORLD
AND IT'S ALSO HARDER TO ENGAGE
IN RESEARCH.
>> WONDERFUL.
THANK YOU.
AND THEN WE HAD DR. BONNIE DURAN
PRESENT, TALKING ABOUT
COMMUNITY-BASED PARTICIPATORY
RESEARCH, AND SHE IS PROFESSOR
EMERITUS, UNIVERSITY OF
WASHINGTON SCHOOL OF SOCIAL WORK
AND PUBLIC HEALTH.
SHE GAVE US LOTS OF INFORMATION
BUT I WILL SUMMARIZE A COUPLE
POINTS, SHE HAS BOOKS, SHE HAS
WRITTEN AND INFORMED MANY OF US,
AS WE WENT THROUGH PUBLIC
HEALTH.
A COUPLE OF HER HIGHLIGHTS, SHE
DEFINED AND DESCRIBED
COMMUNITY-BASED PARTICIPATORY
RESEARCH WHICH SHE REFERS AS A
PARTNERSHIP APPROACH TO RESEARCH
THAT EQUITABLY INVOLVED
COMMUNITY MEMBERS, ORGANIZATIONS
REPRESENTATIVE AND RESEARCHERS
IN ALL ASPECTS OF THE RESEARCH
PROCESS.
DR. DURAN INDICATED COMMUNITY
BRACED PARTICIPATORY RESEARCH IS
THE WAY TO GO FOR COMMUNITY OF
COLOR AND HISTORICALLY
MARGINALIZED COMMUNITIES.
SHE EMPHASIZED THE IMPORTANCE OF
INTERVENTION RESEARCH, THIS
INVOLVES PROCESSES THAT HONOR
CULTURAL KNOWLEDGE AND COMMUNITY
VOICE, THAT LOCAL SETTINGS, AND
USED BOTH ACADEMIC AND COMMUNITY
LANGUAGE LEADING TO
STRENGTH-BASED CULTURE-CENTERED
INTERVENTIONS.
SHE EMPHASIZED THAT SEVERAL
TIMES DURING HER PRESENTATION.
SHE ALSO TALKED ABOUT THE
IMPORTANCE OF SHARING RESOURCES
AND PAYING PEOPLE FOR
PARTICIPATING IN RESEARCH.
AS I SAID, I WAS -- ALL OF US
WERE INSPIRED BY HER
PRESENTATION AND HER COMMITMENT
TO THE FIELD.
SO THAT'S A SUMMARY OF WHAT WE
TALKED ABOUT, WE HEARD
YESTERDAY.
I THINK A COUPLE OF DR. MANLY
MENTIONED THE ISSUE OF HEALTH
EQUITY TOURISM, AND THIS WAS --
THIS CAME UP IN DR. DURAN'S
PRESENTATION, IF DR. MANLY
WANTED TO EMPHASIZE ON THAT.
>> WELL, I THINK IF ANYONE HERE
OTHER OUT THERE HAS READ THE
PAPER, I FORGET WHICH YEAR,
MAYBE 2020, MAYBE 2021, FIRST
SHORE IS ELLE LETT, IN
PubMed, I HAVE IT -- EVERY
TIME I SEARCH FOR IT IN MY
GOOGLE IT SHOWS ME I'VE SEARCHED
FOR IT PROBABLY A MILLION TIMES
SO IT LEADS ME RIGHT THERE.
BUT IT SORT OF DESCRIBES WHAT
HAPPENS WHEN PEOPLE WHO ARE SORT
OF, YOU KNOW, NOT EXPERTS IN
HEALTH EQUITY RESEARCH FOR
WHATEVER REASON DECIDE TO OR
HAVE THE OPPORTUNITY TO DO
RESEARCH IN POPULATIONS THAT
EXPERIENCE HEALTH DISPARITIES.
THAT THERE IS -- THERE CAN BE A
PROCESS OF SORT OF BIAS THAT
OCCURS WITH THAT.
ALSO SORT OF A DISSOLUTION OF
PRINCIPLES OF HEALTH EQUITY THAT
MAINTAIN TRUSTING RELATIONSHIPS
WITH COMMUNITIES THAT EXPERIENCE
DISPARITIES IN HEALTH.
AND SO IN PART, I ENCOURAGE YOU
TO READ IT BECAUSE IT'S AN
EXCELLENT DEFINITION OF HEALTH
EQUITY TOUR ISM BUT FOUR OR FIVE
PRINCIPLES THAT HELP US
UNDERSTAND WHAT IS GOOD HEALTH
EQUITY RESEARCH.
PART OF THAT IS COMMUNITY
PARTNERSHIPS.
THAT IS WHAT DR. DURANTE -- THAT
WAS THE CORE MESSAGE OF HER TALK
AS WELL.
YOU KNOW, ESSENTIALLY SHE -- DR.
DURANT AND ELLE LETT ARE TALKING
ABOUT THE SAME PROCESS, WHICH IS
HOW DO WE CREATE A SUSTAINABLE
PARTNERSHIP WITH COMMUNITIES IN
ORDER TO CONDUCT THE VERY BEST
RESEARCH IN THESE COMMUNITIES,
THAT THAT IS INCLUSIVE, THAT
DOES ADDRESS HEALTH DISPARITIES.
AND SO I THOUGHT THAT EVEN
THOUGH SHE SAID SHE HASN'T READ
THE PAPER THERE REALLY, YOU
KNOW, A LOT OF COMMONALITIES
ACROSS THE TWO.
>> THANK YOU.
THANK YOU FOR THAT, DR. MANLY.
ARE THERE ANY QUESTIONS FROM THE
COUNCIL MEMBERS?
COMMENTS?
>> THERE WAS A LOT OF DISCUSSION
AFTER YOU MADE THAT.
I HAD NEVER HEARD OF THE TERM
HEALTH EQUITY TOURISM.
BUT ONE OF THE THINGS THAT WE
WERE DISCUSSING WAS HOW IN
SCIENCE WE ALL WANT TO GET
GRANTS, ALL WANT TO BE FUNDED,
ALL WANT TO WRITE PAPERS.
GRAPH STATE TO TO THINGS THAT
YOU CAN GET FUNDING ON.
IT DOESN'T MEAN THEY ARE ILL
INTENTIONED.
BUT IT MEANS YOU GET PEOPLE, AND
THIS HAS HAPPENED IN THE A.D.
WORLD IN GENERAL, PEOPLE IN
DIFFERENT AREAS COMING IN AND
THEY KNOW NOTHING, THEY HAVE
THEIR FAVORITE THING THEY DO AND
THEY THINK THEY CAN GET FUNDED
IN THE ALZHEIMER'S WORLD.
IT BEHOOVES US TO FIGURE OUT HOW
CAN WE EDUCATE PEOPLE WHO ARE
OPEN, I THINK OPEN, TO HELPING
OTHER AREAS.
YOU KNOW, HELPING IN DIFFERENT
DIRECTIONS.
AND I THINK MOST OF US DON'T
WANT TO HURT OR DO ANYTHING
WRONG BUT WE MIGHT NOT KNOW THE
BEST WAY OF DOING THINGS.
FOR PEOPLE FOR INSTANCE IN
RESEARCH FROM CARDIOLOGY, ASK
WHAT ALZHEIMER'S IS, WHAT THEY
WANT TO DO, I FEEL LIKE WE HAVE
TO AS A COMMUNITY, AS IT GROWS,
EDUCATE AND DIRECT PEOPLE.
WE DON'T HAVE A LOT OF TIME TO
DO THAT.
AND WE'RE NOT ALWAYS GOOD AT
DOING IT.
BUT HOW CAN WE MOVE PEOPLE WHO
ARE, QUOTE, TOURISTS WHO ARE --
THEIR INTENTION IS NOT NEGATIVE
BUT -- I DON'T THINK -- TO
UNDERSTAND WHAT THEY NEED TO DO
IN THE COMMUNITIES TO NOT BE
DETRIMENTAL.
>> I'VE THOUGHT ABOUT THAT A
LOT, AND I THINK THAT THERE'S
TWO THINGS THAT I -- JUST AS NIA
COUNCIL, WE CAN THINK ABOUT,
WHICH IS ONE IS WHEN WE HAVE
CONCEPT CLEARANCES THAT
ESPECIALLY IF THE CORE PART, AND
IT SHOULD BE A CORE PART OF MANY
OF THEM, IS TO ADDRESS
DISPARITIES IN WHATEVER THE --
YOU KNOW, OUTCOME IS, IT COULD
BE ADRD, YOU MENTIONED THAT
BEING FREQUENTLY MENTIONED IN
CONCEPT CLEARANCES, BUT IF
ADDRESSING DISPARITIES OR
INCLUDING POPULATIONS THAT
AREN'T TRADITIONALLY INVITED TO
BE IN RESEARCH IS PART OF THE
GOAL, THEN ANOTHER PART OF BEING
RESPONSIVE TO THAT APPLICATION
COULD BE EXPERTISE IN THE
LEADERSHIP OF THAT APPLICATION
IN HEALTH EQUITY.
PROVEN EXPERTISE IN HEALTH
EQUITY.
SO WHAT THAT MEANS IS NOT
NECESSARILY ALWAYS TRYING TO
RETOOL, YOU KNOW, THE NETWORK,
YOU KNOW, THE NETWORK OF PEOPLE
WHO TRADITIONALLY RESPOND TO
THESE APPLICATIONS.
ALTHOUGH THAT COULD BE CERTAINLY
A KEY PART OF WHAT NIA DOES IN
ITS TRAINING, TRAINING ACROSS
THE CAREER LEVEL, THAT IF WE'RE
GOING TO REALLY BE A MORE
INCLUSIVE SCIENCE OF AGING,
THAT, YOU KNOW, WE HAVE TO MAKE
SURE PEOPLE HAVE THE
RECOGNITION, YOU KNOW, RECOGNIZE
WHAT THAT MEANS, WHAT THE
PRINCIPLES ARE OF HEALTH EQUITY.
AND SO THAT'S ONE PIECE.
THE OTHER PIECE IS SOME OF US
ARE NEVER GOING TO REACH THE
LEVEL OF BEING AN EXPERT IN THE
SCIENCE OF INCLUSION.
IT'S JUST NOT THE CORE PART OF
WHAT WE DO.
AND SO WE NEED TO PARTNER WITH
EXPERTS AND THAT PARTNERSHIP HAS
TO BE AN EQUAL ONE.
AND THAT MEANS LEADERSHIP, NOT
JUST A -- YOU KNOW, SORT OF A
SUPERFICIAL PIECE OF THE, YOU
KNOW, LEADING THE EDUCATION
OUTREACH CORE.
YOU KNOW, THAT'S NOT THE ONLY
ROLE THAT WE HAVE.
AND SO WHAT I'M SAYING IS THAT,
YOU KNOW, I'M HOPING THAT MORE
IN THE FUTURE, I'VE LEARNED THIS
FROM PROGRAM OFFICERS HERE, THAT
THERE MAY BE ADDITIONAL WAYS TO
ENCOURAGE AND TO HARD CODE INTO
THE APPLICATIONS THAT ARE
RESPONSIVE THIS HEALTH EQUITY
EXPERTISE.
>> THANK YOU, GREAT POINT.
>> AS PART OF THE PARTNERSHIP
YOU ALLUDED TO, DR. MANLY, I
THINK FOR EXAMPLE THE TRAINING
PROGRAMS THAT WE HAVE LIKE THE
K22, THEY SHOULD BE LOOKING TO
THE NON-PROFIT SECTOR, FOR
EXAMPLE.
I ASKED THAT QUESTION YESTERDAY,
WHAT IS THE ROLE OF THE
NON-PROFIT SECTOR IN THIS.
THERE'S A HUGE ROLE THE
NON-PROFIT SECTOR CAN PLAY.
THERE'S TRUST WITHIN THIS
SECTOR.
THERE'S THE YOUNG POPULATION IS
CONNECTED, FAMILIES ARE
CONNECTED TO THESE SECTORS.
WE'RE LEAVING OUT A HUGE
OPPORTUNITY.
SO I INVITE ALL OF US TO THINK
ABOUT HOW CAN WE INCORPORATE THE
NON-PROFIT SECTOR IN ORDER TO,
YOU KNOW, TO BE MORE INCLUSIVE
OF POPULATIONS THAT ARE OFTEN
NOT INCLUDED.
SO WITH THAT, --
>> A COUPLE QUESTIONS.
>> I JUST WANTED TO FOLLOW UP ON
WHAT DR. MANLY JUST SAID.
REALLY AGREE WITH HER.
NOW, THE ISSUE FOR THE ADRCs
FOR CENTER PROGRAM, OF COURSE
IT'S A DECISION BY THE NIA AND
THE CENTER DIRECTORS ON THE
ADMINISTRATION SIDE, THERE ARE
SOME ADRCs THAT HAVE A FULL
CORE WHICH IS DEDICATED TO
RECRUITING PARTICIPANTS FROM
UNDERREPRESENTED GROUPS.
WE HAVE ONE IN WISCONSIN,
WashU AND OTHER ADRCs THAT
HAVE FULL CORES TO DO THAT.
IT'S BEEN VERY SUCCESSFUL, I CAN
TELL YOU, FROM OUR EXPERIENCE IN
WISCONSIN.
THE ISSUE HERE IS COULD THAT BE
A MANDATORY CORE AND IF SO THEN
THAT COURSE BUDGET HAS TO COME
FROM EXISTING BUDGET WHICH MAKES
IT DIFFICULT BECAUSE MOST OF THE
CENTERS HAVE MANY CORES WHICH
ARE MANDATORY.
I MEAN, FOR US IT'S VERY
IMPORTANT.
IT'S REALLY PROGRAM'S DECISION
WHETHER SUCH A CORE COULD BE
MADE MANDATORY OR IN THE RFA
THAT THEY HAVE TO AT MINIMUM
DEMONSTRATE THERE'S A PERSON
WITH ACKNOWLEDGED AND
DEMONSTRATED EXPERTISE IN THIS
AREA, WHO SHOULD BE IN THE
LEADERSHIP STRUCTURE OF THE
ADRC.
BUT I THINK IT'S A CRITICAL
POINT, WE REALLY HAVE INTERN --
BENEFITED, DR. GLEASON LEADS IT,
IT'S BEEN VERY SUCCESSFUL, THINK
ABOUT HOW IT COULD BE DONE
ACROSS THE CENTER'S PROGRAM.
>> THANK YOU.
>> NOW FOR SOMETHING COMPLETELY
DIFFERENT.
SO, IF WE WANT TO CREATE A TRUST
BETWEEN RESEARCH ENTERPRISE AND
UNDERSERVED MINORITY
COMMUNITIES, THERE'S ONE VERY
IMPORTANT ASPECT OF IT WHICH
ALMOST NEVER OCCURS.
I HAVE NIH GRANTS.
THE RPPR THAT I CREATE, THERE'S
A PLACE FOR PUBLIC
DISSEMINATION.
BUT WHAT THEY REALLY WANT TO
KNOW, PUBLICATION, HIGH-IMPACT
JOURNALS, WHAT KIND OF -- AND
PRESENTATION, THAT SORT OF
THING.
BUT THERE'S NO PLACE OR THE
RESEARCHERS ARE NEVER ENCOURAGED
TO ACTUALLY ASK THE SIMPLE
QUESTION, DID YOU DO ANY
PRESENTATION TO THE COMMUNITY
WHO CONTRIBUTED TO THE
DISCOVERY?
IF YOU ASK THAT, RESEARCHER WILL
DO IT.
BUT THAT NEVER HAPPENS.
I'VE NOT SEEN IT YET.
SO, IN MY OPINION, GIVING THE
FEEDBACK TO THE COMMUNITY WHO
CONTRIBUTED TO THE SCIENCE IS A
REALLY BIG DEAL.
AND I THINK IT COULD BE FOR OUR
CASE, THEY DO COMMUNITY
GATHERINGS.
YOU CAN GO THERE AND TALK ABOUT
IT.
HEY, WE DID THIS, THESE ARE THE
FINDINGS.
BEFORE SOMEBODY LISTENS TO THAT
IN IPHA MEETING WHICH HAS
OCCURRED.
EVEN BEFORE CHEROKEES KNEW WHAT
WAS FOUND IT WAS IN A PAPER,
SOME PRESENTATION IN NEW YORK.
I WAS IN THAT AUDIENCE.
SO COMMUNITY SUMMARY, THERE'S A
NUMBER OF WAYS YOU CAN
COMMUNICATE WITH, YOU KNOW,
UNDERSERVED MINORITIES, AND I
THINK THAT'S A PART BY AND LARGE
MY EXPERIENCE HAS BEEN MISSED.
IF WE START THERE, SOME OF THE
-- YOU KNOW, THE THINGS THAT WE
HEARD, ISSUES YESTERDAY, YOU
KNOW, LACK OF TRUST, ALL THAT
STUFF, PROBABLY WILL GO AWAY AT
SOME POINT.
>> VERY GOOD.
THANK YOU.
THANK YOU FOR THOSE COMMENTS.
I THINK WE'LL NEED TO MOVE ON.
THANK YOU, DOCTORS CRUZ AND
SCHNEIDER.
>> ONE POINT, THE MANUSCRIPT DR.
MANLY CITED, I SHARED THAT WITH
JASMINE AND SHE WILL POST IT IN
COUNCIL BOOKS TO SEE AND READ
THE DEFINITION.
>> YES.
THANK YOU.
NEXT UP WE HAD OUR WORKING GROUP
ON PROGRAM.
I'LL TURN IT OVER TO THE CHAIR,
DR. SUSAN GREENSPAN.
SUSAN?
>> THANK YOU, KEN.
WE HAD ONE CONTRACT THAT HAD
THREE PARTS.
MODELING AGING THROUGH
MICROPHYSIOLOGICAL SYSTEMS,
SECOND PART DIGITAL TECHNOLOGIES
AS TOOLS TO SCREEN AND MONITOR
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS, AND THE THIRD PART
LEVERAGING MULTI-MODAL AND
GENERATEIVE ARTIFICIAL
INTELLIGENCE TO ADVANCE THE
APPLICATION OF SOCIAL ROBOTICS
IN CAREGIVING.
THE PRIMARY REVIEWER WAS DR.
HUANG, SECOND WAS DR. REUBEN.
DR. HUANG, PLEASE BRIEFLY
COMMENT, GIVE US A SUMMARY OF
THE PROPOSAL AND COMMENTS.
>> YES, THANK YOU.
THIS CONTRACT CLEARANCE COVERS
THREE TOPICS.
ALL THREE TOPICS WERE DISCUSSED
AND APPROVED BY SMALL BUSINESS
COMMITTEE, PEOPLE COME, JUST
GIVE A BRIEF SUMMARY OF THE
DISCUSSION.
FIRST ONE IS THE MODELING
MICROPHYSIOLOGICAL SYSTEM.
MAJORITY OF RESEARCH
INVESTIGATING BIOLOGICAL
MECHANISM UNDERLYING NORMAL
AGING PROCESS AND AGING-RELATED
DISEASE HAS BEEN CONDUCTED USING
CULTURES AND MODELS, MANY YEARS,
THAT ONLY PARTIALLY RECAPITULATE
AGING IN HUMANS.
SO THIS SBRR CONTRACT SOLICITED
A NEW SYSTEM CALLED
MICROPHYSIOLOGICAL SYSTEM, WHICH
ARE THREE DIMENSIONAL HUMAN
TISSUE CULTURAL CONSTRUCTS, TO
MIMIC BETTER HUMAN TISSUE, COULD
PROVIDE MORE TRANSLATION ON
RELEVANT AND COST EFFECTIVE
MODELS TO SUPPLEMENT OR EVEN
REPLACE 2D CELL CULTURE AND IN
SOME CASES ANIMAL MODELS, IN AGE
AND RESEARCH AND DIRECTIVE ON
THAT.
SHORT-TERM GOAL IS CONTRACT TO
ESTABLISH MPS, SPECIAL TERM OF
THIS MICROPHYSIOLOGIC SYSTEM, AS
A STANDARDIZED TOOL FOR
DISCOVERY SCIENCE OR DRUG
DEVELOPMENT, AGING RESEARCH.
SO, THIS LONG-TERM GOAL IS
FURTHER IMPLEMENTATION OF MPS AS
FDA QUALIFIED DRUG DEVELOPMENT
TOOL, IN FUTURE.
THIS IS A FIRST.
THE SECOND TOPIC IS DIGITAL
TECHNOLOGIES AS TOOLS TO SCREEN
AND MONITOR ALZHEIMER'S DISEASE
AND RELATED DEMENTIA, LARGELY
MANAGED SYMPTOM, AND THE DISEASE
MODIFYING TREATMENT HAVE BECOME
AVAILABLE ONLY RECENTLY,
SIGNIFICANT HOW IDENTIFY
PREVENTED EFFECTIVE MANAGEMENT
AND TREATMENT OF AD OR ADRD,
RELATED TO THE SCREENINGS, EARLY
DETECTION, ENROLLMENT IN
CLINICAL TRIALS AND MANY OTHERS.
THERE'S UNMET NEED TO DEVELOP
NEW TOOLS THAT CAN FILL THESE
GAPS.
SO A REASON THAT'S BEEN
INTERESTING DEVELOPMENT OF
DEVICE AND DIGITAL TECHNOLOGIES
TO EVALUATE COGNITIVE
IMPAIRMENT, AND THOSE DEVICE AND
TECHNOLOGIES SUCH AS SOFTWARE
HAVE ADVANTAGE OF CONSISTENCY IN
ADMINISTERING TEST AND
REPRODUCIBILITY OF THOSE
RESULTS.
HOWEVER, TO BE UNIVERSALLY
ACCEPTED THOSE TOOLS NEED TO BE
STANDARDIZED, VALIDATED IN
DIVERSE POPULATIONS.
THIS CONTRACT SUPPORTS NEED FOR
DEVELOPMENT FOR THOSE TOOLS IN
USE.
SO THE GOAL OF THIS CONTRACT
TOPIC IS TO STIMULATE THE
PARTICIPATION OF SMALL BUSINESS
IN THE DEVELOPMENT TOOL PROGRAM.
AND THIS SECOND, THE LAST ONE IS
LEVERAGING MULTI-MODAL AND
GENERATIVE ARTIFICIAL
INTELLIGENCE TO ADVANCE THE
APPLICATION OF SOCIAL ROBOTICS
IN CAREGIVING.
THERE'S CLEAR BURDEN OF THE
CAREGIVING FOR A PERSON WITH
DEMENTIA, ARISING USUALLY FROM
BOTH PSYCHOLOGICAL AND
NON-PSYCHOLOGICAL STRESSORS THAT
IS OVERWHELMING.
ASSISTIVE TECHNOLOGIES THAT
ATTENUATE CAREGIVING BURDEN WILL
BE NEEDED.
HOWEVER MOST SOLUTIONS ARE
MOBILE OR WEBSITE-BASED THAT
HAVE MANY LIMITATIONS.
THOSE LIMITATIONS REDUCE MEANING
FOR THOSE PERSONS WITH DEMENTIA
ENGAGEMENT.
SO THAT'S WHY THIS MODEL AND
GENERATIVE A.I. CAN LIKELY
ADDRESS THE NEED OF TACKLING
LIMITATIONS, THE BROAD OBJECTIVE
OF THIS CONTRACT PROPOSAL IS TO
LEVERAGE MULTI-MODAL AND
GENERATIVE A.I. TO PROVIDE A NEW
TOOL TO REVOLUTIONIZE
APPLICATION OF SOCIAL ROBOTICS
IN CAREGIVING FOR THOSE PERSONS
WITH DEMENTIA.
ALL THREE SET ASIDE BECAUSE
THEY ALL REQUIRE SPECIFIC
EXPERTISE FOR THE REVIEWING AND
SUPPORTING.
AND THOSE TOPICS ALL ADDRESS
SEVERAL NIA PRIORITIES INCLUDING
GOALS ABCD AND F, AND IN
DISCUSSION COUNCIL AGREE THIS IS
A WELL DESIGNED AND TIMELY
IMPORTANT MULTI-TOPICS SBRR
CONTRACT PROPOSALS LOOKING FOR
SUPPORT.
>> THANK YOU.
THAT APPEARS TO BE ENTHUSIASM TO
MOVE THE PROPOSAL FORWARD.
CAN WE DO A FORMAL VOTE?
IS THERE A MOVE TO MOVE THIS
FORWARD?
>> SO MOVED.
>> IS THERE A SECOND?
ALL THOSE WHO APPROVE IT?
ANY OPPOSED?
SO THIS CONCEPT WILL FORMALLY
MOVE FORWARD.
THANK YOU.
>> THANK YOU, DR. GREENSPAN.
THAT CONCLUDES OUR REPORTS ON
THE TASK FORCE ON AGING AND
WORKING GROUP ON PROGRAM.
LET'S SEE.
SO I THINK AT THIS TIME LET'S
TAKE A QUICK FIVE OR TEN-MINUTE
BREAK AND WE'RE GOING TO HAVE
OUR FIRST SPEAKER, AND I'LL HAVE
LYNDON JOHNSON INTRODUCE HER
WHEN WE ALL COME BACK FROM
BREAK.
LET'S TAKE A 10-MINUTE BREAK.
10:50, PLEASE REPORT BACK AT 10:50. THANK YOU.
>> WE COULD ALL SIT DOWN WE'RE
GOING TO GET STARTED WITH OUR
FIRST SPEAKER.
THANK YOU.
LYNDON, DO YOU WANT TO INTRODUCE
OUR SPEAKER?
>> GOOD MORNING, EVERYONE.
IT'S MY PLEASURE TO INTRODUCE
DR. TUHINA NEOGI, THE DGCG
SPEAKER TODAY, PROFESSOR OF
MEDICINE AND EPIDEMIOLOGY,
BOSTON UNIVERSITY SCHOOL OF
MEDICINE, PUBLIC HEALTH, ALAN S
COHEN PROFESSOR OF RHEUMATOLOGY,
CHIEF OF RHEUMATOLOGY, BOSTON
MEDICAL CENTER, RESEARCH FOCUSES
ON OSTEOPOROSIS AND GOUT,
PARTICULARLY ON PAIN MECHANISM.
HAS BEEN FUNDED BY THE WAY
THROUGH NIH SINCE ABOUT 2003,
CONTINUOUSLY SINCE THEN, ALSO
BEEN PAST CHAIR OF FDA ADVISORY
COMMITTEE, NUMEROUS BOARDS
INCLUDING OSTEOARTHRITIS
RESEARCH, SOCIETY OF
INTERNATIONAL ORGANIZATION, AND
AMERICAN COLLEGE OF
RHEUMATOLOGY.
SHE'S ALSO PART OF THE
INTERNATIONAL ASSOCIATION FOR
STUDY OF PAIN.
DEPUTY EDITOR FOR OSTEOARTHRITIS
JOURNAL, AND WORK HAS BEEN
RECOGNIZED IN 2014 AS HENRY
KUNKEL YOUNG INVESTIGATOR AWARD
FOR INDEPENDENT CONTRIBUTIONS TO
RHEUMATOLOGY RESEARCH.
SHE'S ALSO HONORARY DOCTORATE
FROM SWEDEN, AND ENGAGED IN NEW
CLASSIFICATION FOR RHEUMATIC
DISEASES, LED THE NATIONAL ACR
TREATMENT GUIDELINES FOR ADULT
AND OSTEOARTHRITIS.
IN ADDITION TO RESEARCH, HAS
MENTORED QUITE A FEW POSTDOC AND
JUNIOR FACULTY, OVER 40 OF
THOSE, 18 HAVE RECEIVED NIH K
AWARDS.
OF PARTICULAR INTEREST TO THE
TALK TODAY, HAS BEEN ON THE
EXECUTIVE COMMITTEE, STEERING
COMMITTEE FOR THE STUDY FUNDED
BY NIA OVER 20 YEARS, ON THE
EXECUTIVE COMMITTEE FOR MORE
THAN 10 YEARS.
SHE HAS WORKED ON A LOT OF LARGE
COHORT STUDIES INCLUDING
FRAMINGHAM HEART STUDY AND
JACKSON HEART STUDY.
WITHOUT FURTHER ADO I PRESENT
DR. NEOGI, TALKING ON
OSTEOARTHRITIS AND CHRONIC PAIN
IN OLDER ADULTS, INSIGHTS FROM
THE MOST AND FRAMINGHAM STUDIES.
>> I'M HONORED TO HAVE BEEN
INVITED AS THE GUEST SPEAKER FOR
THE COUNCIL MEETING.
AND I'M HONORED TO BE ABLE TO
PRESENT SOME OF THE DATA THAT
WE'VE GATHERED AND ANALYZED OVER
THE YEARS WITH NIA'S GENEROUS
SUPPORT WITH OUR GRANTS.
I'M STANDING BETWEEN US AND
LUNCH AND DEPARTURE SO I'LL KEEP
ON TIME HERE.
FIRST, WHAT IS THE PURPOSE OF
PAIN?
ACUTE PAIN IS INTENDED TO
PROTECT OURSELVES FROM HARM.
TOUCH A HOT STUFF, YOU PULL
BACK, GO FOR A JOG AND TWIST
YOUR ANKLE AND LIMP TO ALLOW
INTERTISSUE TO NOT HAVE ONGOING
INJURY AND TO ALLOW ITSELF TO
HEAL.
ONCE THE TISSUE IS HEALED THE
PAIN GOES AWAY.
IN MANY INSTANCES OF CHRONIC
PAIN, WHEN THE INJURY IS HEALED
AND THERE'S STILL ONGOING PAIN
EXPERIENCED, THAT IS NO LONGER
HAVING A PROTECTIVE FUNCTION.
THAT'S CONSIDERED MALADAPTIVE.
ON THE OTHER HAND, THERE ARE
MANY DISEASES IN WHICH THAT
CONTINUES AND A DISEASE LIKE
OSTEOARTHRITIS.
ONE CAN HAVE CHRONIC PAIN THAT'S
MAL ADAPTIVE OR BECAUSE THE
NOXIOUS STIMULUS IS ONGOING.
CHRONIC PAIN IS MORE PREVALENT
AND COSTLY THAN OTHER COMMON
DISEASES.
IN THE U.S. 100 MILLION ADULTS
HAVE CHRONIC PAIN, WORLD WILD
OTHER 1.5 BILLION, 20%.
THAT PREVALENCE IS HIGHER THAN
CARDIOVASCULAR DISEASE,
DIABETES, CANCER ALL TOGETHER.
THE VAST MAJORITY OF CHRONIC
PAIN ARE MUSCULOSKELETAL
CONDITIONS CONDITIONS INCLUDING
OSTEOARTHRITIS AND CHRONIC LOW
BACK PAIN, AND THESE ARE MORE
COSTLY TO THE U.S. HEALTH CARE
SYSTEM AND SOCIETY MORE BROADLY
THAN CANCER, CARDIOVASCULAR
DISEASE, DIABETES.
THE MAJORITY OF CHRONIC PAIN IS
OSTEOARTHRITIS AND LOW BACK PAIN
AND OVER TO THE RIGHT OF THE
FIGURE YOU SEE THAT DIABETIC
PERIPHERAL NEUROPATHY,
MIGRAINES, DAILY HEADACHES ARE
MUCH LOWER PREVALENCE, YET WHEN
I GO TO BRAIN CONFERENCES THE IN
MAJORITY OF RESEARCH IS ON
THAT.
ALMOST 600-MILLION PEOPLE
WORLDWIDE REFLECT 10 TO 15% OF
ADULT POPULATIONS, THE KNEE IS
THE MOST COMMON SITE OF
SYMPTOMS, IN THE U.S. IN THE
PRIOR 30 DAYS APPROXIMATELY 30%
OF ADULTS WILL REPORT HAVING
EXPERIENCED KNEE PAIN.
LOOK AROUND YOUR COLLEAGUES,
ABOUT 30% OF YOU WILL HAVE HAD
KNEE PAIN IN THE PAST 30 DAYS.
INITIALLY IN KNEE OSTEOARTHRITIS
KNEE PAIN IS WEIGHT BEARING AND
ACTIVITY RELATED.
COULD BE JOGGING, WALKING,
TENNIS, SKIING, ET CETERA.
OVER TIME PAIN BECOMES MORE
PERSISTENT AND MORE SEVERE AND
CAN HAVE FLUCTUATIONS INCLUDING
FLARES THAT PEOPLE CAN'T FIGURE
OUT WHY THEIR KNEE ALL OF A
SUDDEN GOT MUCH WORSE.
JOINT PAIN IN THE U.S. IS THE
MOST COMMON REASON FOR VISITS,
THIS IS WHAT THEY ARE
PREDOMINANTLY SEEING.
WORLDWIDE MUSCULOSKELETAL
CONDITIONS ARE LEADING CAUSE OF
DISABILITY, MOST SHOCKINGLY
OSTEOARTHRITIS IS THE THIRD
LEADING HOSPITAL DISCHARGE
DIAGNOSIS IN THE U.S., THIRD
AFTER CHILD BIRTH RELATED
HOSPITALIZATIONS AND SEPSIS.
THIS IS MORE COMMON THAN ALL THE
CARDIOVASCULAR ADMISSIONS THAT
WE AS MEDICAL STUDENTS AND
TRAINEES HAD TAKEN CARE OF
BECAUSE OF JOINT REPLACEMENT
SURGERY, ONE OF THE MOST COMMON
ORTHOPEDIC SURGERIES, WITH A
PAUCITY OF EFFECTIVE AND SAFE
THERAPEUTIC OPTIONS FOR
OSTEOARTHRITIS THAT WE HAVE
MILLIONS OF PEOPLE IN THIS
COUNTRY WITH JOINT REPLACEMENT
AS THE DEFINITIVE BUT LAST
RESORT MANAGEMENT OPS.
A HUGE PUBLIC HEALTH BURDEN.
I'M GOING TO FRAME THE
DISCUSSIONS ABOUT OSTEOARTHRITIS
AND PAIN USING TWO NIA-FUNDED
STUDIES.
THE MULTI-CENTER OSTEOARTHRITIS
STUDY COMPRISES 3,000 OLDER
ADULTS WITH OR AT RISK OF KNEE
OSTEOARTHRITIS WHEN ENROLLED, 20
YEARS AGO NOW, 2003-2005.
AND MOST RECENTLY FOURTH CYCLE
FUNDED BY A U19, WE'RE ABOUT TO
START IN THE FIELD ANY DAY NOW
FOR THE 20th YEAR, FRAMINGHAM
STUDY YOU'RE FAMILIAR WITH, OVER
75 YEARS IN THE FIELD,
GROUNDBREAKING COHORT STUDY FOR
CARDIOVASCULAR DISEASE BUT ALSO
BRAIN HEALTH.
AND MANY OTHER CONDITIONS.
THE ORIGINAL COHORT, OFFSPRING,
GENERATION 2 AND 3.
BECAUSE OF LIMITED TIME I'M NOT
GOING TO SHARE THE JACKSON HEART
STUDY BUT WE ARE IN MIDDLE SO I
DON'T HAVE DATA TO SHOW YET.
FIRST I'M GOING TO FOCUS ON
OSTEOARTHRITIS.
ONE OF THE MAJOR CONUNDRUMS IS
THIS SO-CALLED STRUCTURE SYMPTOM
DISCORDANCE, THAT IS WHERE SOME
KNEES HAVE PAIN BUT VERY LITTLE
RADIOGRAPHIC CHANGES.
OTHER KNEES CAN LOOK TERRIBLE ON
X-RAY, MINIMAL OR NO PAIN.
OVERLAP BETWEEN HAVING KNEE PAIN
AND RADIOGRAPHIC FEATURES IS
INCOMPLETE.
THIS LED TO DISCUSSION ABOUT,
WELL, MAYBE WHAT'S GOING ON IN
THE KNEE, PATHOLOGY ISN'T REALLY
CONTRIBUTING TO PAIN.
BUT AS YOU LIKELY APPRECIATE,
EVERYONE EXPERIENCES PAIN
DIFFERENTLY.
IF I PUNCH ONE PERSON WITH THE
SAME FORCE AS ANOTHER PERSON,
THOSE TWO INDIVIDUALS WILL
EXPERIENCE IT DIFFERENTLY.
WHEN I WAS A POSTDOC AND WORKING
ON MY Ph.D. I TOOK AN
EPIDEMIOLOGIST PERSPECTIVE, HOW
DO WE GET RID OF BETWEEN-PERSON
FACTORS, CONFOUNDERS THAT CLOUD
THIS UNDERSTANDING OF HOW DOES
JOINT PATHOLOGY CONTRIBUTE TO
PAIN, AND THE APPROACH I TOOK
WAS LOOKING AT PEOPLE WITH PAIN
IN ONE KNEE, NOT THE OTHER.
THEN ALL OF THOSE BETWEEN-PERSON
DIFFERENCES, SEX, GENETICS, HOW
WELL YOU SLEPT, MOOD,
EXPECTATIONS, ALL INHERENTLY
CONTROLLED FOR IN THAT
INDIVIDUAL.
ONE KNEE HAS PAIN, OTHER KNEE
DOES NOT, THERE MUST BE
SOMETHING GOING ON IN THE KNEE.
IF YOU DO THAT ANALYSIS HERE ON
THE X-AXIS IS THE RADIOGRAPHIC
SEVERITY OF O.A., WITH GRADE 2
BEING DEFINITION OF DEFINITIVE
RADIOGRAPHIC O.A.
ON Y-AXIS ODDS RATIOS FOR HAVING
KNEE PAIN, I DID THIS IN BOTH
THE MOST STUDY AND FRAMINGHAM.
YOU CAN SEE DOSE-RESPONSE
RELATIONSHIP GOING UP TO ODD
RATIOS OF 100, VERY STRONG
RELATIONSHIP OF PATHOLOGY TO
PAIN.
WHY DON'T WE SEE THIS IN BROADER
GENERAL EPIDEMIOLOGIC STUDIES
THAT THAT'S BECAUSE THERE ARE
ALL THOSE OTHER FACTORS THAT
CONTRIBUTE TO THE PAIN
EXPERIENCE THAT WE RARELY
MEASURE AND CONTROL FOR IN OUR
STUDIES.
FOR ME AS A CLINICIAN ONE OF THE
MOST IMPORTANT THINGS I DO FOR
EVERYONE IS UNDERSTAND SLEEP,
MOOD, COPING SKILLS, WHETHER
THEY HAVE HAVING
CATASTROPHIZING.
NO MATTER WHAT I DO IF THOSE
THINGS ARE NOT ADDRESSED WE
WON'T GET OPTIMAL PAIN
MANAGEMENT.
I'M GOING TO SHOW WITH THE NIA
FUNDING WHAT WE'VE BEEN ABLE TO
DO TO FURTHER DISCERN
JOINT@OLOGY -- PATHOLOGY
CONTRIBUTORS NOT UNDERSTOOD TO
DATE, CCPD IS CALCIUM CRYSTALS,
CAUSING PSEUDOGOUT, NO LONGER
THE TERM USED.
ON X-RAY CAN BE SEEN AS
CHONDROCALCINOSIS, THOUGHT TO BE
ASYMPTOMATIC.
BECAUSE BOTH CPPD AND
OSTEOARTHRITIS INCREASE IN
PREVALENCE WITH AGE,
CO-OCCURRENCE WAS THOUGHT TO BE
TOO COMMON THINGS THAT OCCUR
WITH AGING AND THESE CALCIUM
CHRIS CRYSTALS WITH NOT DOING
ANYTHING.
THESE CAN CAUSE PSEUDOGOUT, WHY
DO WE THINK THEY DON'T HAVE
PATHOLOGIC EFFECT?
WE WANTED TO STUDY WHETHER THIS
COULD ACTUALLY HAVE A PATHOLOGIC
IMPLICATION TO OSTEOARTHRITIS.
IN THE LAST CYCLE OF MOST,
FUNDED THROUGH A SERIES OF U01
MECHANIC MECHANISM GRANTS WE
WERE THE FIRST TO OBTAIN KNEE
CTs, HOPEFULLY IT'S
PROJECTING, IT'S HARD TO SEE
WHETHER THERE'S ANY
CALCIUMIZATION IN THE KNEE BUT
ON CT YOU CAN CLEARLY SEE AREAS
OF MINERALIZATION.
WITH THE THREE DIMENSIONAL
NATURE OF THE IMAGING MUCH MORE
ABLE TO SEE THIS.
AND WHAT WE FOUND WITH THE CT
THE PREVALENCE OF MINERALIZATION
IN COHORT WAS OVER 13% YOU ABOUT
ON PAIRED RADIOGRAPHS UNDER 7%,
DOUBLE THE PREVALENCE.
SOMETHING MORE SENSITIVE AND
IDENTIFYING MORE, YOU HAVE LESS
MISCLASSIFICATION.
NOW WE SHOWED FOR FIRST TIME
THAT THIS CALCIUM DEPOSITION
INCREASES RISK FOR KNEE PAIN
DEVELOPMENT AND WORSENING OVER
TWO YEARS.
AND ALSO THAT IT INCREASES RISK
OF CARTILAGE DAMAGE IN THE SAME
LOCATION OVER TWO YEARS.
THIS MINERALIZATION THOUGHT TO
BE JUST AN INNOCENT BYSTANDER IS
NOT INNOCENT.
IT'S CAUSING INCREASE IN PAIN
AND INCREASE IN CARTILAGE DAMAGE
AND OSTEOARTHRITIS.
SO WHY IS THIS IMPORTANT?
THIS HAS TREMENDOUS TREATMENT
IMPLICATIONS FOR KNEE
OSTEOARTHRITIS.
WE HAVE A PAUCITY OF EFFECTIVE
TREATMENT OPTIONS FOR KNEE
OSTEOARTHRITIS.
IMPLICATION CAN BE GLEANED FROM
TWO CARDIOVASCULAR TRIALS,
CANTOS AND LODOCO2.
THESE TWO LARGE TRIALS, 10,000
FOR CANSOT, 5500 FOR LODOCO2,
FOUND IN A POST HOC ANALYSIS
PARTICIPANTS ON INTERVENTION HAD
40% LOWER CHANCE OF JOINT
REPLACEMENT.
90% OF KNEE REPLACEMENTS ARE FOR
KNEE OSTEOARTHRITIS.
THEY MUST BE PEOPLE WHO HAVE
OSTEOARTHRITIS, THEY MAYBE HAVE
OA CCPD PHENOTYPE BECAUSE
ANTI-IL-1 THERAPY AND COLCHICINE
IS WHAT WE USED TO TREAT.
THEY HAVE BEEN TESTED, TRIALS
HAVE BEEN SMALL AND SHORT
DURATION.
AND IT TOOK HUGE 10,000 AND 5500
PARTICIPANT TRIALS OVER LONGER
PERIODS OF TIME FOUR AND FIVE
YEARS TO FIND A SIGNAL.
WE IN OSTEOARTHRITIS MAY BE
MISSING PROMISING TREATMENTS
BECAUSE OUR TRIALS HAVE BEEN TOO
SMALL, TOO SHORT, TOO
HETEROGENEOUS.
NOW I'M GOING TO SHIFT GEARS AND
FOCUS ON NEUROBIOLOGICAL
MECHANISMS OF PAIN.
FOR THOSE CLINICIANS THAT HAVE
SEEN PEOPLE WITH OSTEOARTHRITIS
YOU WILL HAVE RECOGNIZED THAT
THERE DOES SEEM TO BE SOMETHING
GOING ON WHERE INITIALLY IN
EARLY STAGES OF DISEASE PAIN MAY
BE MORE LOCALIZED FOR EXAMPLE TO
THE MEDIAL ASPECT OF THE KNEE
BUT LATER ON DISEASE PROGRESSES,
PAIN CAN BECOME MORE DIFFUSE,
SPATIAL SPREADING OF THE
SYMPTOMS.
AND IN THE LAST TEN YEARS OR SO
GREATER APPRECIATION FOR PAIN
MECHANISMS THAT CONTRIBUTE TO OA
PAIN EXPERIENCE HAVE COME TO
LIGHT.
WE KNOW THAT PAIN IS NOT SIMPLY
A SIMPLE STRAIGHT TRANSMISSION
FROM A NOXIOUS STIMULUS STRAIGHT
TO THE BRAIN.
WE NOW UNDERSTAND THERE CAN BE
ALTERATIONS IN THE WAY THESE
NOCICEPTORS FUNCTION.
IT'S NOT A NERVE LESION.
IT'S NOT A NEUROPATHY.
BUT JUST THE WAY IN WHICH THE
SIGNALS ARE GOING FROM THE
PERIPHERY TO THE SPINAL CORD TO
THE BRAIN.
IF YOU HAVE NOXIOUS STIMULI,
THOSE NOCICEPTORS WILL TRANSMIT
SIGNALS.
IN THE SETTING OF CENTRAL
SENSITIZATION NOCICEPTORS MAY
FIRE AT SUBTHRESHOLD INPUTS, AND
MAY HAVE MORE ACTION POTENTIAL
LEADING TO HYPERALESIA, MORE
PAIN.
ALLODYNIA, PAIN WHERE THERE
SHOULDN'T BE PAIN.
ASCENDING FACILITATION AS WELL
AS DESCENDING PAIN MODULATION
ABNORMALITIES THAT CAN
CONTRIBUTE TO OVERALL PAIN
EXPERIENCE.
IN ANIMAL MODELS IT'S EASIER TO
STUDY THIS WITH
ELECTROPHYSIOLOGY WE CAN'T
REALLY INTERROGATE THE SPINAL
CORD IN HUMANS SO WE USE
INDIRECT ASSESSMENT INCLUDING
QUANTITATIVE SENSORY TESTING.
FORGIVE MY VERY CRUDE CARTOON OF
THE PERIPHERAL NOCICEPTOR GOING
TO THE SPINAL CORD, TO THE
BRAIN, DESCENDING MODULATORY
PATHWAY.
TO EVALUATE THESE VARIOUS
PATHWAYS WE USE A VARIETY OF
INSTRUMENTS.
TO ASSESS PRINCIPLE NOCICEPTORS,
A HAND HELD, THE PRESSURE FIRST
CHANGES AT SLIGHT PAIN.
LOWER THE THRESHOLD, MORE PAIN
SENSITIZATION, THIS CAN BE
INFERRED TO MEASURE CENTRAL
SENSITIZATION IF ASSESSED AT
NON-DISEASED SITE.
AND THEN TEMPORAL SUMMATION IS
REFLECTIVE OF ANIMAL PHENOMENON
OF WINDUP.
BY APPLYING PUNCTATE PROBE AT
REGULAR INTERVAL IF THERE'S NO
SENSITIZATION YOU EXPECT ACTION
POTENTIAL TO GENERATE THE SAME
LEVEL, YOU WOULD GET SAME LEVEL
OF PAIN.
IF SOMEONE HAS CENTRAL
SENSEIZATION WITH ASCENDING
STIMULATION STIMULI BUILD UP,
INCREASE IN PAIN RATING AFTER
THE TRAIN OF STIMULI.
FINALLY TO INTERROGATE
DESCENDING MODULATORY PATHWAY,
WE USE PARADIGM, A PROTOCOL,
CONDITIONED PAIN MODULATION.
HERE WE ASSESS PRESSURE PAIN
THRESHOLD, APPLY SECOND
CONDITIONING PAINFUL
CONDITIONING STIMULUS, AND IF
THAT ACTIVATES THE THEORY THAT
ACTIVATES DEDESCENDING
MODULATORY PATHWAY THE SECOND
TIME, THE PRESSURE PAIN
THRESHOLD SHOULD INCREASE, KIND
OF THE PAIN INHIBITS PAIN
PARADIGM.
THIS SLIDE IS GOING TO SUMMARIZE
ABOUT TEN YEARS WORTH OF STUDIES
WE'VE DONE.
FIRST FOCUSING ON ASCENDING
FACILITATION USING PRESSURE PAIN
THRESHOLD AND TEMPORAL SUMMATION
WE FOUND THESE MEASURES WERE
ASSOCIATED WITH PAIN SEVERITY,
ADJUSTING FOR POTENTIAL CON
FOUNDERS, BUT CONTRARY TO
HYPOTHESIS, THESE WERE NOT
ASSOCIATED WITH DEGREE OF
RADIOGRAPHIC SEVERITY.
WE HAD HYPOTHESIZED THE
PATHOLOGY, THE MORE SEVERE THE
PATHOLOGY, THE MORE LIKELY ONE
WOULD HAVE CENTRAL
SENSITIZATION, PERIPHERAL
SENSITIZATION.
WE DID NOT FIND THAT.
IN ADDITION WE HAD HYPOTHESIZED
LONGER ONE HAS DISEASE MORE
LIKELIHOOD OF DEVELOPING
SENSITIZATION, WE DID NOT FIND
THAT.
WE DELVED IN MORE.
RADIOGRAPHS ARE INSENSITIVE.
WHEN USING MRI DATA IN MOST, WE
HYPOTHESIZED THAT INFLAMMATORY
LESIONS AND MECHANICAL LESIONS
WHICH IN ANIMAL MODELS CAN LEAD
TO SENSITIZATION WOULD BE MOST
RELEVANT AND FOUND THAT
SYNOVITIS AND EFFUSIONS WERE
ASSOCIATED WITH SENSITIZATION
AND WORSENING SENSITIZATION BUT
BONE MARROW LESION WHICH
MECHANICALLY DRIVEN WERE NOT
ASSOCIATED WITH SENSITIZATION.
THEY CONTRIBUTE TO PAIN, THE
MECHANIC MILES MECHANIC
MECHANISM IS NOT THROUGH SEVEN
ADVERTISATION.
FINDINGS THAT WERE CONTRARY THEY
ARE NOT CONTRIBUTING TO
INCREASED RISK OF SENSITIZATION
RAISED THIS QUESTION WHETHER
THIS IS A STATE THAT'S INDUCED
OR A TRAIT INHERENT TO AN
INDIVIDUAL.
SO ONE OF MY MENTEES WHO IS NOW
ASSOCIATE PROFESSOR IN CANADA,
McMASTER UNIVERSITY, SHE AND I
WANTED TO PULL THIS BACK AND
LOOK AT PAIN SUSCEPTIBILITY
WITH PEOPLE FREE OF KNEE PAIN.
MOST STUDIES ARE IN PEOPLE WITH
PAIN.
CHICKEN AND EGG SESSION.
SITUATION.
WE WANTED TO UNDERSTAND WHAT
FACTORS MIGHT CONTRIBUTE TO
TRANSITION FROM BEING FREE OF
PERSISTENT KNEE PAIN TO
DEVELOPING CHRONIC PAIN.
WE OF COURSE LOOKED AT OUR QSC
MARKS AND FACTORS ASSOCIATED
WITH PAIN EXPERIENCE, I'M HAVING
WIDESPREAD PAIN ALREADY, MOOD
ISSUES, POOR SLEEP, ET CETERA.
AND SO WE STARTED WITH PEOPLE
FREE OF KNEE PAIN.
FOLLOWED THEM OVER TWO YEARS.
AND WHAT WE FOUND AT THE END OF
TWO YEARS, PEOPLE MOST
SENSITIZED BASED ON PRESSURE
PAIN THRESHOLD MEASURE HAD
TWO-FOLD INCREASED RISK OF
DEVELOPING PERSISTENT KNEE PAIN.
HOW WE DID THIS, USED LATENT
CLASS ANALYSIS.
AGNOSTIC APPROACH.
AND WE IDENTIFIED FOUR CLUSTERS
OF THESE FEATURES.
AND THE ONE GROUP THAT I
MENTIONED ALREADY WAS MOST
HIGHLY SENSITIZED BY PRESSURE
PAIN THRESHOLD.
ANOTHER GROUP HAD A LOT OF
TEMPORAL SUMMATION.
WHAT I THOUGHT WAS INTERESTING,
REASON I'M SHOWING THIS FIGURE,
OTHER FACTORS THAT WE KNOW
CONTRIBUTE TO THE PAIN
EXPERIENCE WERE NOT DIFFERENT
AMONG THESE FOUR CLUSTERS.
AND WHEN WE DID ANALYSES THESE
OTHER CLASSES HAD NULL
RELATIONSHIPS WITH DEVELOPING
PERSISTENT KNEE PAIN.
SO THIS STARTS TO GET A HINT
THAT WHATEVER WE'RE MEASURING
WITH PRESSURE PAIN THRESHOLD
SEEMS TO BE INHERENT TRAIT THAT
PRECEDES DEVELOPMENT OF
PERSISTENT KNEE PAIN.
WHEN THIS WAS PRESENTED TO NIH
PAIN MEETING IN 2019, THEY SAID
THIS WAS LIKE ONE OF THE MOST
IMPORTANT INSIGHTS FOR
UNDERSTANDING THE TRANSITION
FROM ACUTE TO CHRONIC PAIN.
IS THIS AN INHERENT TRAIT?
ANOTHER ADVANTAGE OF HAVING
LONGITUDINAL DATA FROM THE MOST
STUDY, HAVING THIS FUNDING
CONTINUE, IS THAT WE HAVE A RICH
LONGITUDINAL DATASET TO PULL
FROM, TO ASK IN THESE TYPES OF
QUESTIONS.
AND SO BECAUSE IT SEEMS THAT
PAIN SENSITIZATION PRECEDES
ONSET OF PERSISTENT KNEE PAIN,
ET CETERA, WE TOOK A LOOK AT OUR
DATA LONGITUDINALLY AND DID A
GROUP-BASED TRAJECTORY ANALYSIS.
AND WE FOUND THAT PEOPLE KIND OF
CLUSTERED IN HIGH PRESSURE PAIN
THRESHOLD MEANING LESS
SENSITIZED MODERATE AND LOW OVER
A NINE-YEAR PERIOD.
THIS WAS AN ENTIRE SAMPLE.
I LIMITED TO PEOPLE FREE OF KNEE
PAIN AT BASELINE.
THE FIGURES ARE VIRTUALLY
SUPERIMPOSABLE.
THESE GROUPS REMAINED STABLE
OVER A DECADE, MEANING PEOPLE
HIGH TO BEGIN WITH DON'T ALL OF
A SUDDEN TRANSITION TO BECOMING
MORE SENSITIZED OVER TIME.
EVEN AMONG PEOPLE WHO ARE FREE
OF PAIN AT BASELINE.
NOW WHAT WE'RE GOING TO DO WITH
THE NEXT GRANT APPLICATION, TRY
TO BETTER UNDERSTAND RISK
FACTORS FOR PAIN SENSITIZATION
ITSELF.
MOVING TO CONSEQUENCES OF PAIN
SENSITIZATION, WE FOUND IT WAS
ASSOCIATED WITH PAIN SEVERITY,
EXPECTED AND SEEN IN A LOT OF
OTHER DISEASES.
WHAT WE ALSO NEWLY LOOKED AT AND
IN OSTEOARTHRITIS WITH PAIN
SENSITIZATION HERE IS EFFECTS ON
PHYSICAL FUNCTION.
SO IF WE HAVE ALTERATIONS IN
ASCENDING FACILITATION
SIGNALING, DOES THAT SOMEHOW
IMPACT EFFECTOR MOTOR
FUNCTIONING?
AND SO TWO OF MY MENTEES, PAT
CORRIGAN AND JOSH STEFANICK, ONE
OF THE K AWARDEES THAT LYNDON
MENTIONED, LOOKED AT MEDIATION
ANALYSIS OF WHETHER ANY EFFECT
OF PAIN SENSITIZATION ON
PHYSICAL FUNCTION OCCURS
DIRECTLY NOT THROUGH PAIN
SEVERITY.
WE LOOKED AT A VARIETY OF
FUNCTION OUTCOMES, GAIT, SPEECH,
CHAIR STANCE, AND QUADRICEP
STRENGTH AND FOUND FOR EACH OF
THESE THAT, YES, SOME OF THE
EFFECTS ON PHYSICAL FUNCTION DUE
TO PAIN SENSITIZATION ARE
THROUGH PAIN SEVERITY WILL YOU
LARGE PROPORTION WAS UNEXPLAINED
BY PAIN SEVERITY, SO THERE MAY
BE SOMETHING ELSE, MAYBE
CORTICAL INTEGRATION OR OTHER
THINGS WE'RE NOW EXPLORING.
POST KNEE REPLACEMENT PAIN, SO
DESPITE THE HUGE MILLIONS OF
PEOPLE WHO HAVE JOINT
REPLACEMENTS AS DEFINITIVE BEST
TREATMENT 20 TO 30% STILL HAVE
PAIN AFTERWARDS, NOT UNDERSTOOD
WHY, A HUGE HEALTH BURDEN GIVEN
THE NUMBER OF PROCEDURES.
AOYAGI, NOW AT UNIVERSITY OF
TEXAS, EL PASO, SUBMITTING HIS
FIRST K GRANT, LOOKED AT THIS
WITH ME IN OUR MOST COHORT AND
WHAT WE FOUND IS THAT TEMPORAL
SUMMATION WHICH IS THE ASCENDING
FACILITATION AND INADEQUATE
DESCENDING MODULATION WERE
ASSOCIATED WITH HAVING MORE PAIN
POST KNEE REPLACEMENT.
SO CENTRAL PAIN MECHANISMS SEEM
TO BE AT PLAY IN EXPLAINING AT
LEAST IN PART WHY SOME PEOPLE
HAVE PERSISTENT PAIN POST KNEE
REPLACEMENT DESPITE REMOVING THE
NOXIOUS PATHOLOGIC TISSUE AT THE
PERIPHERY THAT IS SUPPOSEDLY
CONTRIBUTING TO THAT PAIN
EXPERIENCE.
SO NOW I'M GOING TO MOVE TO THE
FRAMINGHAM STUDY.
AND LOOKING AT CHRONIC PAIN IN
OLDER ADULTS IRRESPECTIVE OF
PAIN DIAGNOSES.
IN MEDICINE IF HAVE YOU KNEE
PAIN, YOU GO TO RHEUMATOLOGY,
ANATOMIC BASED MANAGEMENT.
WE TOOK THE PERSPECTIVE MAYBE
THESE ARE ALL PHENOTYPIC
EXPRESSIONS OF THE SAME
UNDERLYING MECHANISM.
AND SO THIS WAS THE FIRST
ANCILLARY STUDY IN FRAMINGHAM TO
LOOK SPECIFICALLY AT PAIN.
WE JUST FINISHED IN THE FIELD OF
EXAM 10 OF GENERATION 2, AND
WE'RE JUST STARTING TO ANALYZE
DATA.
I'LL SHOW A LITTLE BIT.
SO, THE OVERALL ARCHING THEME OF
THIS STUDY TO UNDERSTAND CHRONIC
PAIN BUT PARTICULARLY CHRONIC
OVERLAPPING PAIN SITES BECAUSE
IN OLDER ADULTS THEY DON'T HAVE
PAIN IN JUST ONE LOCATION.
THEY HAVE PAIN IN MANY
LOCATIONS.
SO WE HAD 1600 INDIVIDUALS IN
OUR STUDY, MEAN AGE 75.5, RANGE
52 TO 100.
IN THE WORLD THIS IS THE OLDEST
AGE OF A COHORT THAT EVER HAD
PAIN STUDIED, 55% WAS FEMALE,
OVER 50% REPORTED HAVING CHRONIC
PAIN.
ABOUT A THIRD REPORTED A PAIN
SEVERITY OF AT LEAST 4 TO 10.
THE REASON THAT'S IMPORTANT IS
THAT'S THE MINIMUM PAIN
THRESHOLD FOR ENROLLING IN PAIN
TRIALS.
A THIRD OF OLDER ADULTS HAVE
SUFFICIENT PAIN TO BE ENROLLED
IF THEY MET INCLUSIONS AND
INCLUDED PEOPLE OF THIS AGE
RANGE.
A THIRD HAVE CHRONIC OVERLAPPING
PAIN CONDITIONS, THREE OR MORE
PAIN CONDITIONS.
THE NEXT PART OF THE FIGURE IS
VERY BUSY.
I'M SHOWING ALL THE DIFFERENT
SITES OF PAIN, THEY HAVE ALL
OVER THEIR BODY, AND IN RED
HIGHLIGHTING LOW BACK, KNEE,
HAND, AS EXPECTED LOW BACK AND
KNEE, THE HAND BEING PREVALENT
IS A NOVEL FINDING.
I'LL REITERATE AGAIN I GO TO
PAIN MEETINGS THERE'S VIRTUALLY
NOTHING ON OSTEOARTHRITIS, HAND
AND KNEE IN OLDER ADULTS IS
PREDOMINANTLY OSTEOARTHRITIS,
VERY UNDERSTUDIED AREA OF PAIN
IN OLDER ADULTS.
HOT OFF THE PRESSES, I GOT THIS
A COUPLE DAYS AGO, IT'S A VERY
NOVEL FINDING, THAT BECAUSE OF
THE AGE RANGE OF OUR COHORT
WE'RE ABLE TO -- FOR THE FIRST
TIME ABLE TO SEE PRESSURE PAIN
THRESHOLD, PAIN SENSITIZATION,
WORSENS WITH AGE.
THIS APPEARS TO BE MORE SO IN
MEN THAN WOMEN, PERHAPS SEEING
THE TREND IN MEN BECAUSE WOMEN
HAVE A LOWER THRESHOLD TO BEGIN
WITH.
NOW WE'RE ABOUT TO EMBARK,
SUBMITTING A GRANT TO GET
FUNDING TO EMBARK ON
LONGITUDINAL ASSESSMENT OF PAIN
PHENOTYPES IN THIS FRAMINGHAM
COHORT, AND TO UNDERSTAND
UNDERLYING RISK FACTORS FOR NOT
ONLY CHRONIC PAIN IN OVERLAPPING
PAIN CONDITIONS BUT REALLY
DELVING INTO THE PAIN
SENSITIZATION AS INHERENT TRAIT,
WHAT ARE RISK FACTORS UNDERLYING
ALL OF THIS?
WE'LL LEVERAGE THE RICH DATA IN
FRAMINGHAM, INCLUDING COGNITIVE
FUNCTION MEASURES THAT ARE
THERE, GENETIC
PROTEOMIC, ET CETERA, IT'S BEEN
VERY UNDERSTUDIED AS TO WHAT ARE
THE TRUE RISK FACTORS FOR
CHRONIC PAIN.
AND SO IN SUMMARY, PAIN IS MULTI
FACTORIAL.
WE NEED TO CONSIDER OTHER
CONTRIBUTORS OTHER THAN WHAT WE
THINK THE DIAGNOSIS IS.
WE NEED MUCH MORE OPTIONS FOR
DISEASE MODIFICATION IN PAIN
MANAGEMENT.
I DID NOT HAVE TIME TO SHOW YOU
SOME DATA ABOUT HOW
ARTHRITIS-RELATED CONDITIONS
HAVE CONTRIBUTED TO A MARKED
RISE IN OPIOID PRESCRIPTIONS IN
THE U.S.
AND HAVE LIKELY CONTRIBUTED TO
THE OPIOID EPIDEMIC WITH
OSTEOARTHRITIS AND LOW PAIN
BEING THE BIGGEST CONTRIBUTORS.
WE NEED A MECHANISM-BASED
APPROACH.
ONE-SIZE-FITS-ALL APPROACH HAS
NOT BEEN EFFECTIVE.
WITH THAT I'D LIKE TO AGAIN
REALLY ACKNOWLEDGE IN RED ALL OF
THE NIA FUNDING THAT HAS FUNDED
THIS WORK, THE TOP BULLET IS OUR
CURRENT STUDIES, THE SECOND
BULLET IS U01 CONTRACT FOR THE
FIRST THREE CYCLES OF MOST.
I THANK ALL MY COLLABORATORS AS
WELL.
THANK YOU.
>> THANK YOU VERY MUCH.
QUESTIONS FROM OUR COUNCIL
MEMBERS?
>> I'LL ASK THE FIRST QUESTION
BECAUSE IT CAME EARLY IN THE
TALK.
I WAS STRUCK BY THE DIFFERENCE
IN OSTEOARTHRITIS AND LOWER BACK
PAIN INDICES BETWEEN JAPAN AND
EUROPE AND THE UNITED STATES.
AND WHAT IS KIND OF THE THINKING
BEHIND THAT, SOME OF THE
EXPLANATION FOR WHY WE SEE SUCH
A DISCREPANCY BETWEEN THE
MEASURES THERE?
>> SO THANK YOU FOR THAT
QUESTION.
THAT HAS BEEN AN AREA OF ACTIVE
RESEARCH.
THE TWO MAIN HYPOTHESES ARE
OBESITY AND PHYSICAL ACTIVITY.
AND THE COHORTS FROM JAPAN THAT
CONTRIBUTED TO THROWS TYPES OF
STUDIES HAVE BEEN IN PARTS OF
JAPAN WHERE PEOPLE ARE
PHYSICALLY ACTIVE IN DAILY
LIVES, EVEN INTO OLDER AGES.
SO THOSE ARE THE TWO PREVAILING
HYPOTHESES.
SOME ABOUT DIET AS WELL BUT I
THINK THAT ALL CONTRIBUTES TO
METABOLIC HEALTH AND OBESITY.
>> VERY NICE TALK.
THANK YOU.
TWO QUESTIONS.
ONE WAS RELATED TO EXERCISE.
WONDERING HOW EXERCISE AFFECTS
THE PAIN THRESHOLDS AND PAIN
MECHANISMS, I GUESS YOU COULD
ASK ABOUT HOW EXERCISE AFFECTS
OSTEOARTHRITIS, I'VE BEEN SEEING
ARTICLES IN THE LAST FEW YEARS
HOW EXERCISE IS ACTUALLY GOOD
FOR THAT, PEOPLE USED TO THINK I
CAN'T EXERCISE, I DON'T KNOW
WHAT YOUR THOUGHTS ARE ON THAT.
YEAH, HOW IT AFFECTS THE PAIN
THRESHOLD AS WELL.
>> SURE, THANK YOU FOR THAT
QUESTION.
YES, ABSOLUTELY, THERE'S LOTS OF
VERY GOOD DATA THAT EXERCISE IS
BENEFICIAL FOR OSTEOARTHRITIS.
THAT HEALTHY EXERCISE MEANS
AVOIDING INJURY TO THE JOINTS,
BENEFITS THE JOINT.
THE JOINT NEEDS SOME DEGREE OF
LOADING, UNDERLOADING FOSTERS
ARTHRITIS, LOTS OF GOOD EVIDENCE
FOR EXERCISE.
WITH REGARDS TO HOW EXERCISE
AFFECTS PAIN THRESHOLDS, THAT IS
ONE OF OUR PROJECTS FROM THE U19
NOW THAT WE'RE STUDYING.
THERE'S A CONCEPT OF RUNNER'S
HIGH.
SO FOR MANY PEOPLE WHEN THEY RUN
THEY FEEL BETTER, THEY HAVE LESS
PAIN, THEY FEEL EUPHORIA.
PROBABLY FROM RELEASE OF
ENDOGENOUS OPIOID PATHWAYS.
SOME PEOPLE DON'T FEEL THAT.
AND SO THERE IS A PARADIGM OF
EXERCISE-INDUCED HYPO ALGESIA,
YOU FEEL LESS PAIN, PAIN RELIEF
WITH EXERCISE.
BUT SOME PEOPLE HAVE NO
IMPROVEMENT OR WORSENING.
SO WE'RE STUDYING THAT RIGHT NOW
TO TRY TO UNDERSTAND.
THAT'S REALLY IMPORTANT
THERAPEUTICALLY BECAUSE THE
FIRST LINE MANAGEMENT FOR
OSTEOARTHRITIS IS EXERCISE AND
PHYSICAL THERAPY.
BUT WE MAY BE SETTING UP A
NUMBER OF PATIENTS FOR FAILURE
BY SENDING THEM FOR FAILURE THAT
NEURONAL MECHANISMS ARE NOT SET
UP TO TAKE ADVANTAGE OF.
SO UNDERSTUDIED AREA, MOST
STUDIES HAVE BEEN HANDFUL OF
PEOPLE, THEY SHORT PROTOCOLS.
WE'VE DELVING INTO THE IMPORTANT
QUESTION.
>> ONE AREA MORE ON BIOMARKERS,
IF YOU HAD SYNOVIAL FLUID AND
COULD DO PROTEOMICS, IF THE KNEE
HAS AN EFFUSION IT CAN BE
HAPPENED, I DON'T KNOW WHAT THE
ETHICS ARE FOR TAPPING A KNEE
WITHOUT EFFUSION BUT YOU'VE GOT
PHYSIOLOGY NOW.
CAN YOU BRING FLUID-BASED
BIOMARKERS INTO THESE STUDIES?
>> SO THE FIRST QUESTION, ONE OF
THE U19, SECOND IS PROJECT TWO.
LET'S SEE IF YOU GET THE
JACKPOT, ALL THREE.
>> NOT A RHEUMATOLOGIST.
>> PROJECT 2 IN THE U19 IS
EXACTLY THAT.
ON ULTRASOUND EVEN IN A HEALTHY
KNEE THERE'S SMALL VOLUME.
BUT WHAT WE'RE DOING IS
SCREENING ALL KNEES WITH BEDSIDE
ULTRASOUND.
THOSE WITH SUFFICIENT VOLUME
EVEN TO GET ONE C.C. THEY WILL
UNDERGO ULTRASOUND-GUIDED
ULTRASOUND AND WE'LL HAVE
PROTEOMICS DONE, PART OF A
LARGER WORLDWIDE EFFORT WHERE
MANY COHORTS AROUND THE WORLD
ARE ATTEMPTING TO DO THIS.
OURS WILL BE VERY UNIQUE BECAUSE
MOST OTHER COHORTS HAVE LATE
STABLED ESTABLISHED
OSTEOARTHRITIS.
WE HAVE A BROAD RANGE FROM NO
O.A., EARLY O.A., TO LATE O.A.
>> THANK YOU.
>> THIS IS ALL REALLY EXCITING.
I WAS WONDERING IF YOU HAD AN
OPINION ON THE WORK BY LIKE
NAOMI EISSENBERGER AND TEAMS
THAT LOOK AT THE MIND-BODY
CONNECTION AND WHEN SHE PUTS
PEOPLE IN fMRIs, PLAYS
PASS-THE-BALL, YOU STOP, THE
SAME PART OF THE BRAIN LIGHTS UP
WHEN THE PERSON IS IN PAIN, HOW
THAT CONTRIBUTES OR DOESN'T OR
IF YOU DISMISS THAT WORK OR JUST
GREAT TO HAVE YOUR OPINION ON
THAT.
>> FULL DISCLOSURE I DON'T DO
fMRI STUDIES SO I WON'T SEEK
SCIENTIFICALLY ABOUT IT BUT
THERE'S DEFINITELY GOOD DATA.
BASIS FOR COGNITIVE BEHAVIORAL
THERAPY, SO THERE'S GOOD DATA
ABOUT LEVERAGING THOSE MIND-BODY
CONNECTIONs FOR PAIN
MANAGEMENT.
AND THE AREAS IN THE BRAIN THAT
LIGHT UP WITH RESPECT TO NOXIOUS
STIMULUS AND/OR JUST MOVING A
PAINFUL JOINT, THOSE SAME AREAS
CAN BE LIT UP BY SHOWING SOMEONE
AN IMAGE OF SOMETHING PAINFUL.
WHETHER IT'S EXPECTATION OR
ACTUAL NOCICEPTIVE INPUT I THINK
HAS BEEN MORE DIFFICULT TO
DISENTANGLE BUT NONETHELESS I
RECOMMEND MINDFULNESS BASED
STRESS REDUCTION FOR ALL MY
PATIENTS WHO HAVE PAIN.
EVEN IF WE DON'T REALLY
UNDERSTAND THE MECHANISM BUT
THERE'S ENOUGH DATA TO SUGGEST
IN A VARIETY OF CHRONIC PAIN
SETTINGS THAT ALTERING ONE'S
APPROACH AND WHETHER IT'S
ACHIEVABLE BY DIFFERENT FORMS OF
MEDITATION, THERE HAVE BEEN NICE
SMALL STUDIES SHOWING CHANGES IN
WHAT'S LIGHTING UP AFTER
SOMEONE'S DONE A STABLE
PROLONGED MEDITATION PRACTICE,
AND THEY ARE EXPERIENCING LESS
PAIN.
SINCE IT'S FREE AND HAS NO HARM,
WHY NOT?
>> I WONDER IF YOU CAN MAKE A
COMMENT ON SOME RECENT EVIDENCE
THAT ENDORSED SIGNALING IS
INVOLVED IN OSTEOARTHRITIS,
PHYSIOLOGY, INHIBITORS COULD BE
POTENTIAL TREATMENTS FOR THIS
DISEASE, WHETHER YOU CAN MAKE
COMMENT.
>> I'M NOT A BASIC SCIENTIST,
CANNOT COMMENT ON WHICH
INTRACELLULAR SIGNALING PATHWAYS
ARE MOST PROMISING.
THERE HAVE BEEN MANY PROMISING
TARGETS FOR OSTEOARTHRITIS AND
PAIN INCLUDING INTRACELLULAR
SIGNALING PATHWAYS, RECEPTORS ON
CELL SURFACE, ET CETERA.
A MAIN CHALLENGE FOR ANY OF
THESE PROMISING PATHWAYS DESPITE
HAVING PROMISE IN ANIMAL MODEL
STUDIES WHEN WE TRANSLATE TO
CLINICAL HUMAN TRIALS WE HAVE
MULTIPLE PROBLEMS.
ONE IS THE STANDARD INCLUSION
CRITERIA FOR TRIALS IS GRADE 2
OR 3 WITH PAIN LEVEL OF AT LEAST
4, THAT'S A VERY HETEROGENEOUS
POOL OF INDIVIDUALS.
WE NEED A BETTER WAY OF
PHENOTYPING INDIVIDUALS SO IF A
PARTICULAR PATHWAY IS OF
RELEVANCE THEN THE TRIALS
ENRICHED WITH THOSE INDIVIDUALS
GETTING THE RIGHT TREATMENT TO
THE RIGHT PATHWAY.
THE OTHER IS IF WE'RE STARTING
TRIALS AT KL2 OR 3 THAT'S WHEN
THE HORSE IS AT THE BARN.
ISN'T REALISTIC TO THINK
TARGETING A SINGLE MOLECULE OUT
OF ALL GOING ON IN THE JOINT AND
THAT INDIVIDUAL'S BODY HABITUS,
OBESITY, IS GOING TO BE SUCCESS.
WHAT WE'RE TRYING TO DO IS
DEVELOP CLASSIFICATION CRITERIA
FOR EARLIER STAGE O.A. SO
PROMISING BIOLOGIC TARGETS MAY
HAVE A BETTER CHANCE OF SHOWING
SUCCESS THAN AT LATER STAGE,
ALMOST END STAGE DISEASE.
I CANNOT SPECIFICALLY COMMENT ON
YOUR mTOR QUESTION BUT I CAN
SAY BROADLY THERE ARE MANY
DEVELOPMENT PROGRAMS FOR
BIOLOGIC TARGETS BUT I THINK
WE'RE MISSENING THE SIGNAL FOR
THE NOISE AND THE WAY IN WHICH
WE RUN THE TRIALS CLINICALLY.
>> DID YOU DO ANY ANALYSIS BASED
ON DIFFERENT RACIAL GROUPS, MORE
INTERESTED AND CURIOUS THERE'S
SOME STUFF DR. JAMIE RUDY HAS
DONE, DR. POLLACK, SHOWING THE
PAIN PROCESSING AMONG NATIVE
AMERICANS IS SOMEWHAT DAMPENED,
DETRIMENTAL BECAUSE THEY DON'T
SEEK CARE WHEN THEY SHOULD AND
IT DELAYS AND CAUSES
COMPLICATIONS.
>> YES, THANK YOU FOR THAT
QUESTION.
MULTI-CENTRAL OSTEOARTHRITIS
STUDY, A QUARTER TO A THIRD OF
PARTICIPANTS ARE OF AFRICAN
AMERICAN BACKGROUND, LAST CYCLE
WE ATTEMPTED TO INCREASE
ENROLLMENT OF HISPANIC
PARTICIPANTS, HISPANIC
BACKGROUND, CURRENTLY IN THIS
CYCLE WE'RE GOING TO EXPAND
FURTHER.
I DIDN'T GO INTO THAT JUST
BECAUSE I'M HESITANT, WE START
TALKING ABOUT HEALTH EQUITY
TOURISM AND HELICOPTER RESEARCH.
I'M VERY HESITANT ABOUT JUST
DOING ANALYSES BASED ON
SELF-REPORTED RACIAL/ETHNIC
BACKGROUND BECAUSE WE NEED TO
ALSO TAKE INTO ACCOUNT
STRUCTURAL RACISM AND ALL THOSE
OTHER FACTORS THAT CAN
CONTRIBUTE.
SO HAVING SAID THAT, THERE ARE
DIFFERENCES BETWEEN WHITE
PARTICIPANTS AND BLACK
PARTICIPANTS, BUT I DON'T
PRESENT THOSE YET BECAUSE I
REALLY WANT TO GET THIS OTHER
BROADER CONTEXT FOR THAT STORY,
FOR THAT MESSAGE, BECAUSE I
THINK IT'S VERY EASY TO JUST
DICHOTOMIZE AND DO THAT KIND OF
ANALYSES.
YOUR POINT ABOUT PEOPLE WHO HAVE
INADEQUATE PAIN RECEPTION -- I'M
TRYING TO THINK OF THE RIGHT
WORD.
>> MODULATION.
>> YES, WE KNOW CHARCOT JOINT
AND THINGS LIKE THAT, BOTH ENDS
ARE PROBLEMATIC, BUT INADEQUATE
SENSATION CAN LEAD TO
OVERLOADING THE JOINT, ET
CETERA.
>> THIS WAS A REALLY INFORMATIVE
PRESENTATION.
A FEW TIMES YOU SPOKE ABOUT THE
LIMITATIONS OF THE TRIALS, AND
SO I WONDER IF YOU COULD, YOU
KNOW, GIVE US AN OUTLINE JUST
FROM THE PERSPECTIVE OF COUNCIL
OF WHAT THESE TRIALS SHOULD LOOK
LIKE, WHAT ARE THE ELEMENTS, YOU
KNOW, THE SAMPLE SIZE HAS BEEN
TOO SMALL, YOU SAID, IN MANY,
MANY CASES.
IF YOU'VE, YOU KNOW, SEEN TRIALS
THAT HAVE, YOU KNOW, ENOUGH
PEOPLE, ENOUGH TO DO COMPARISONS
ACROSS SUBGROUPS, ACROSS VARIOUS
DIFFERENT CLUSTERS YOU'VE
DEVELOPED, JUST WONDERING IF
YOU'VE COME UP WITH A
COMPREHENSIVE DESCRIPTION OF
WHAT THESE TRIALS SHOULD BE?
>> THANK YOU FOR THAT QUESTION.
I DO WANT TO MAKE ONE COMMENT
FOR THE PRIOR QUESTION THAT I
FORGOT TO MENTION, ANOTHER
REASON I HAVEN'T DONE TOO MUCH
WITH UNDERSTANDING THESE PAIN
MECHANISMS, IN OUR BLACK
PARTICIPANTS, HISPANIC, ET
CETERA, WE'RE IN THE FIELD
PRESENTLY IN JACKSON HEART,
WHICH IS CARDIOVASCULAR COHORT
OF AFRICAN AMERICANS, OLDER
ADULTS, SO ONCE WE HAVE THOSE
DATA WE'LL HAVE MUCH MORE TO BE
ABLE TO BASE OUR ANALYSES AND
DISCUSSIONS ON.
>> AND JACKSON HEART ACTUALLY
COLLECTS A LOT OF THE CONTEXTUAL
DATA THAT YOU WERE JUST
MENTIONING FROM THE GET-GO
INCLUDING EXPERIENCES OF
DISCRIMINATION AND STRUCTURAL
RACISM MEASURES AT THE
NEIGHBORHOOD LEVEL.
THAT WILL BE GREAT FOR YOUR --
>> AND THOSE ARE EXACTLY WHAT
ARE SOME OF OUR FUNDED AIMS,
RELATED TO LOOKING AT THOSE.
AS FOR CLINICAL TRIALS THIS HAS
BEEN AN ONGOING ISSUE THAT THE
OSTEOARTHRITIS WORLD HAS BEEN
TRYING TO TACKLE.
EACH YEAR AT INTERNATIONAL
CONFERENCE WHERE WE TRY TO
TACKLE THIS ISSUE, WE DON'T HAVE
EASY ANSWERS YET.
PART OF IT IS THE WORK THAT
WE'RE JUST STARTING NOW IS ON
DEVELOPING EARLIER STAGE
OSTEOARTHRITIS CLASSIFICATION
CRITERIA BECAUSE WE'VE
RECOGNIZED THAT OUR STANDARD
INCLUSION CRITERIA OF GRADE 2
AND 3 IS TOO LATE IN THE PROCESS
FOR MANY OF THE PHARMACEUTICAL
TARGETS.
HOWEVER, WHO TO INCLUDE, IF
WE'RE NOT USING GRADE 2 AND 3,
IS AN UNANSWERED QUESTION.
SO AN AREA THAT WILL HELP
CLINICAL TRIALS IS ONCE WE
DEVELOP THOSE CRITERIA.
AND THEN THE OTHER IS THAT
OSTEOARTHRITIS IS NOT A
MONOLITHTIC ONE DISEASE.
THERE ARE MANY PATHWAYS THAT
CONTRIBUTE TO THIS END PHENOTYPE
OF WHAT WE SEE ON X-RAY.
AND SO A LOT MORE EFFORT NEEDS
TO BE DONE IN UNDERSTANDING
THESE PHENOTYPES SO, FOR
EXAMPLE, TEN TRIALS OF
COLTRACENE, FOUR OR FIVE HIGH
ENOUGH QUALITY TO DO A
META-ANALYSIS.
EFFECT SIZE IS .3.
AND BUT IT JUST MISSES
STATISTICAL SIGNIFICANCE.
SO THE POOLED EFFECT SIZE.
TO PUT THAT EFFECT SIZE IN
CONTEXT NON-STEROIDAL AL
ANTI-INFLAMMATORY DRUGS HAVE
EFFECT OF .3, WHEN POOLED IT'S
JUST BARELY MISSING STATISTICAL
SIGNIFICANCE.
YOU GET LOCODANE 2, BETWEEN 35
TO 100 PARTICIPANTS, 3 TO 6
MONTHS IN DURATION.
5500 PEOPLE OVER I THINK FIVE
YEARS OF FOLLOW-UP, THEY FINALLY
FOUND A STATISTICALLY
SIGNIFICANT SIGNAL.
I THINK THAT'S JUST ILLUSTRATING
THE PROBLEM THAT -- AND I THINK
MANY PROBLEMS AND TREATMENTS
HAVE UNFORTUNATELY BEEN
DISCARTED AT PHASE 2 LEVEL, IL-1
BETA SAMPLE SIZES OF BETWEEN 130
TO I THINK THE LARGEST WAS 300,
THE SAMPLE SIZE THAT HAD 300 GOT
A P OF .05 BUT WAS ABANDONED.
KANSAS, FOUR OR FIVE YEARS OF
FOLLOW-UP, YOU SEE THE SIGNAL.
>> CAN I ASK ABOUT YOUR COMMENTS
ON HETEROGENEITY, YOU FOCUS ON
KNEE, BUT FROM JOINT TO JOINT,
OSTEOARTHRITIS THOUGHT TO HAVE
SIMILAR UPSTREAM INPUTS AND
THEREFORE ARE REMISSING
SOMETHING BY NOT RECOGNIZING
HETEROGENEITY ACROSS JOINTS OR
RIGHT NOW WE HAVE ENOUGH TO DO
JUST BY FOCUSING ON KNEE?
>> RIGHT, YEAH, SO, YES, I THINK
WHEN SOMEONE HAS KNEE
OSTEOARTHRITIS THEY RARELY ONLY
HAVE KNEE OSTEOARTHRITIS.
THEY WILL TYPICALLY DEVELOP
OSTEOARTHRITIS ELSEWHERE.
AND THAT'S AN AREA OF ACTIVE
RESEARCH BECAUSE IT'S NOT REALLY
UNDERSTOOD IF O.A. ISOLATED, THE
KNEE OR HIP, IF THAT PHENOTYPE
IS DIFFERENT AND MECHANISMS THAT
MIGHT BE DIFFERENT ARE NOT
UNDERSTOOD.
AND WHILE I THINK THE
OSTEOARTHRITIS COMMUNITY DOES
WANT TO TACKLE HIP AND HAND,
THERE'S -- YOU NEED A WIN
SOMEWHERE, THE NEED IS THE MOST
STUDIES TO DATE.
I'M ALSO WORKING WITH A HAND
O.A. COHORT IN NORWAY, WHERE
WE'RE FINDING ALMOST EXACTLY THE
SAME FINDINGS FOR PAIN
SENSITIZATION MEASURES IN HAND
OSTEOARTHRITIS, AT LEAST FROM A
PAIN MECHANISM PERSPECTIVE IT'S
MANY OF THE SAME THINGS.
AND SO THE NICE THING WITH THESE
COLLABORATIONS, WHAT WE DO IN
ONE CO- COHORT WE TRY TO
REPLICATE IN ANOTHER.
VERY GOOD.
THANK YOU SO MUCH, DR. NEOGI.
>> THANK YOU.
>> NOW WE'RE GOING TO TAKE A
LUNCH BREAK BEFORE OUR NEXT
SPEAKER, DR. TARA SCHWETZ,
COMING AT 12:15 SO WE'LL HAVE A
BREAK.
IF EVERYONE COULD COME BACK BY
AROUND 12:10 THAT WOULD BE GREAT
AND WE'LL BE READY FOR OUR FINAL
SPEAKER.
WE'LL DO A LUNCH BREAK, AGAIN
THE CAFETERIA IS OPEN UPSTAIRS, AND WE'LL BE BACK BY 12:10.
>> THANK YOU, WELCOME BACK FROM
LUNCH.
IT'S A PLEASURE TO INTRODUCE
TARA SCHWETZ, UNDERGRADUATE FROM
FLORIDA STATE, BIOPHYSICS,
PERFECT PREPARATION FOR THE ROLE
SHE'S IN NOW, FROM UNIVERSITY OF
SOUTH FLORIDA, POSTDOCTORAL AT
VANDERBILT, NIH IN 2012.
SHE'S BEEN INVOLVED IN AN
EXTRAORDINARY NUMBER TRULY OF
LEADERSHIP POSITIONS ACROSS ALL
OF NIH, ACTING DIRECTOR OF
NURSING INSTITUTE, ACTING
PRINCIPAL DEPUTY DIRECTOR FOR
ALL OF NIH, TOOK A YEAR OFF,
WORKING ON DETAIL FOR THE WHITE
HOUSE, PRINCIPAL ADVISER IN
FORMATION OF ARPA-H AND IT GOES
ON AND ON.
I'VE HAD THE GREAT PLEASURE OF
DEALING WITH HER, ADVANTAGE OF
HER LEADERSHIP IN A NUMBER OF
NIH-WIDE EFFORTS, SO I'M GLAD WE
CAN SHARE HER AND HER KNOWLEDGE
WITH ALL OF YOU.
SHE WILL BE TALKING ABOUT
DPCPSI, I WON'T EVEN TRY EXPLAIN
WHAT IT IS BECAUSE THAT'S WHAT
SHE WILL BE TELLING US ABOUT.
THANK YOU FOR BEING WITH US AND
WE LOOK FORWARD TO HEARING ABOUT
DPCPSI.
>> THANKS, RICHARD.
I'VE HAD THE PLEASURE OF WORKING
WITH RICHARD ON A NUMBER OF
INITIATIVES OVER THE YEARS, SO
REALLY GLAD TO BE HERE AND I
RECOGNIZE THAT THIS IS NOT ONLY
POST LUNCH BUT THE LAST THING
THAT YOU HAVE BEFORE YOU ALL
HEAD OFF TO THE AIRPORT, SO I
WILL TRY TO BE THOROUGH BUT
BRIEF AS MUCH AS I CAN.
AS RICHARD SAID, I'M THE NIH
DEPUTY DIRECTOR FOR PROGRAM
COORDINATION, PLANNING, AND
STRATEGIC INITIATIVES.
AS PART OF THAT ROLE, I'M ALSO
THE DIRECTOR OF DPCPSI, WHICH
STANDS FOR DIVISION OF PROGRAM
COORDINATION PLANNING AND
STRATEGIC INITIATIVE.
SO A LITTLE BIT OF A MOUTHFUL.
I THOUGHT I WOULD GIVE AN
OVERVIEW OF SOME THINGS THAT
WE'RE WORKING ON AT DPCPSI AND
WHERE WE SIT ORGANIZATIONALLY
AND WHAT OUR FOCUS AND MISSION
AREAS ARE.
SO, YOU ALL KNOW THE STRUCTURE
OF NIH, OBVIOUSLY, NIA IS ONE OF
27 INSTITUTES AND CENTERS,
DPCPSI SITS IN THE OFFICE OF THE
DIRECTOR, THE HIGHLIGHTED BOX
HERE.
WITHIN DPCPSI, WE'RE ACTUALLY
COMPOSED OF 14 OFFICES, IN THE
PROCESS OF MOVING TO DIFFERENT
OFFICES TO DPCPSI, SO THOSE ARE
PROPOSALS IN THE GRAY BOXES YOU
SEE HERE.
WE ALSO COORDINATE ONE
ADDITIONAL PROGRAM.
SO ESSENTIALLY, WHAT WE DO IN
DPCPSI IS COORDINATE ALL OF THE
CROSS-CUTTING TOPICS FOR ALL OF
NIH.
SO THINGS THAT TOUCH ON MULTIPLE
OR EVERY SINGLE INSTITUTE AND
CENTER.
SO, I KIND OF LOOK AT OUR OFFICE
STRUCTURE IN A FEW WAYS.
WE'VE GOT A NUMBER OF
PROGRAMMATIC COORDINATION
OFFICES.
THINGS THAT HIT ON, AGAIN, THOSE
REALLY CROSS-CUTTING AREAS LIKE
OUR OFFICE OF DATA SCIENCE
STRATEGY, OFFICE OF RESEARCH ON
WOMEN'S HEALTH, OUR OFFICE OF
BEHAVIORAL AND SOCIAL SCIENCES,
TRIBAL HEALTH RESEARCH OFFICE,
EXAMPLES, AND I COULD GO ON
OBVIOUSLY, MANY MORE TIMES
BECAUSE THERE ARE 16 OFFICES.
BUT THOSE ARE EXAMPLES OF SORT
OF THE PROGRAMMATIC COORDINATION
OFFICES.
WE HAVE A FEW THAT ARE FOCUSED
ON PARTICULAR AREAS, SO THOSE
INCLUDE THINGS LIKE OUR OFFICE
OF RESEARCH INFRASTRUCTURE
PROGRAM THAT HELPS US SUPPORT
ANIMAL MODEL FACILITIES, AND
SORT OF CONSTRUCTION AND
INFRASTRUCTURE PROGRAMS.
WE ALSO HAVE THE COMMON FUND
WITHIN DPCPSI, WITHIN OUR OFFICE
OF STRATEGIC COORDINATION.
AND THEN THE TWO PROPOSED TO
MOVE TO DPCPSI AND WE'RE IN THE
PROCESS OF DOING THAT, IT'S JUST
NOT FINAL YET, ARE THE "ALL OF
US" RESEARCH PROGRAM AND THE
ENVIRONMENTAL INFLUENCES ON
CHILD HEALTH OUTCOMES, ECHO
PROGRAM.
AND WE ALSO HAVE THE "INCLUDE"
PROGRAM, WHICH DOESN'T HAVE AN
OFFICE ASSOCIATED WITH IT BUT
IT'S AN EFFORT THAT RICHARD AND
I CO-CHAIR WITH DOCTORS DIANA
BIANCHI AND GARY GIBBONS.
WE HAVE ANOTHER BUCKET OF
OFFICES THAT ARE FOCUSED ON
DEVELOPING RESOURCES AND TOOLS
FOR NIH COMMUNITY, SO MOST OF
THAT IS SORT OF OUR
INTERNAL-FACING WORK THAT WE DO
ACROSS NIH.
BUT THINGS THAT HELP US BETTER
UNDERSTAND AND ASSESS OUR
PORTFOLIO, OUR OFFICE PORTFOLIO
ANALYSIS, AND OFFICES THAT HELP
US MONITOR AND TRACK OUR
PERFORMANCE METRICS, HELP
EVALUATE DIFFERENT PROGRAMS WE
DO.
THAT'S OUR OFFICE OF EVALUATION
PERFORMANCE AND REPORTING.
IN A HIGHER LEVEL WAY WHAT DO WE
DO?
THE FIRST ITEM THAT YOU'RE
LOOKING AT ON YOUR LEFT IS
REALLY THE MAIN THING WE DO, BUT
THEY ARE ALL OF THE THINGS THAT
ARE KIND OF IN DPCPSI IN SUPPORT
OF TRYING TO ALIGN AND CATALYZE
SCIENCE.
WE DO THAT BROADLY AGAIN ACROSS
NIH.
WE DO THAT THROUGH RESOURCE
DEVELOPMENT AND FACILITATING
STRATEGIC COORDINATION ACROSS
THE BOARD.
SO, WHEN WE GET INTO THE NEXT
LEVEL DOWN, THE DETAILS OF HOW
WE DO THAT, YOU CAN SEE THAT AT
THE BOTTOM THROUGH SYNERGISTIC
COORDINATION BY BUILDING UP
PARTNERSHIPS IN KEY AREAS WE
CHARGED WITH ACROSS OUR
DIFFERENT OFFICES.
WE DO THAT THROUGH IDENTIFYING
AND CATALYZING RESEARCH
OPPORTUNITIES AND GAPS THAT WE
IDENTIFY AND SEE AND FOSTER
COLLABORATION TO BE ABLE TO
ADDRESS THOSE.
WE THINK ABOUT DEVELOPING NEW
METHODS TO ENABLE THE DIFFERENT
RESEARCH GOALS ACROSS THE BOARD.
THIS IS A NEW WAY OF DESCRIBING
KIND OF ONE OF THE THINGS WE DO,
A THING I THINK IS MOST
EXCITING, WE SERVE AS
EXPERIMENTAL TEST BED FOR NIH
ACTIVITIES, THE PLACE THAT'S
FORWARD THINKING, THINKING ABOUT
HOW WE CAN DO OUR SCIENCE BETTER
AND DIFFERENTLY, MORE
EFFECTIVELY ACROSS THE BOARD AT
NIH, CARRIED OUT IN A SMALL
SCALE THING TO SEE HOW IT WORKS.
WE'VE PIONEERED IN A BIG WAY THE
USE OF OTHER TRANSACTION
AUTHORITIES TO FUND AWARDS, WE
ALSO MANAGE ALL OF THE CHALLENGE
PRIZES THAT COME THROUGH NIH.
OKAY.
SO, OUR VISION ACROSS DPCPSI, WE
CALL THIS OUR RECIPE FOR
SUCCESS, AND YOU'LL UNDERSTAND
WHY IN A SECOND.
BUT IT'S REALLY TO ADVANCE
BIOMEDICAL AND BEHAVIORAL
SCIENCE COORDINATING
CROSS-CUTTING INNOVATIVE
SOLUTIONS THAT FOSTER INSTITUTES
COLLABORATION AND HELP IMPROVE
THE HEALTH OF THE NATION.
THAT'S KIND OF AT THE END OF THE
DAY WHAT WE'RE STRIVING TO
ACHIEVE.
SO OUR VALUES, THESE ARE
PROPOSED VALUES, THIS IS
SOMETHING NEW FOR DPCPSI THAT
WE'RE STILL WORKING ON.
BUT THE TEAMS ACROSS THE
DIVISION ARE GOING THROUGH AND
REFINING THESE A LITTLE BIT MORE
SO THAT'S WHY WE SAY THEY ARE
PROPOSED BECAUSE WE WANT THEM TO
BE OUR COLLECTIVE VALUES ACROSS
THE WHOLE DIVISION AND NOT JUST
FROM LEADERSHIP DOWN OR FROM A
FEW KEY PLACES.
THIS IS WHERE YOU GET THE
RECIPE, YOU CAN SEE THAT THERE,
THINKING ABOUT HOW WE CAN
CONTINUE TO FOSTER AND BUILD
RESPECT AND CELEBRATING
DIVERSITY OF THE CONTRIBUTIONS
OF EVERYONE ON THE TEAM, AGAIN
COORDINATION IS A MAJOR
COMPONENT OF WHAT WE DO AT
DPCPSI.
WE'RE CALLING THAT OUT AS WELL
AS STIMULATING INNOVATION.
THINKING ABOUT, YOU KNOW, DOING
THOSE THINGS THROUGH
PARTNERSHIPS, AND HELPING TO DO
THAT IN A REALLY THOUGHTFUL WAY
WHERE WE'RE PRIORITIZING
EXCELLENCE BUT EXCELLENCE IN ALL
ASPECTS OF WHAT WE DO INCLUDING
BEING INCLUSIVE OF ALL
POPULATIONS.
OKAY.
SO, OUR GOALS IN ORDER TO BE
ABLE TO DO THAT INCLUDE THE
THREE THINGS YOU SEE HERE.
REALLY FOCUSING ON THE RESEARCH
ADVANCEMENT AND HOW WE CAN ALIGN
AND CATALYZE RESOURCES ACROSS
THE BOARD TO STIMULATE
TRANSFORMATIONAL SCIENCE.
WE NEED TO HAVE A STRONG WORK
FORCE TO DO THAT, TO SUPPORT THE
WORKFORCE WITHIN OUR
ORGANIZATION EFFICIENTLY AND
EFFECTIVELY AND MAKE SURE WE'RE
MINIMIZING BURDEN ON THEM.
AND THEN ENGAGING EXTERNALLY,
WE'RE USING THIS WORD PRETTY
BROADLY IN TERMS OF EXTERNAL,
THAT'S BOTH ACROSS THE BOARD
WITHIN NIH AS WELL AS OTHER
FEDERAL AGENCIES, BUT ALSO WITH
THE COMMUNITY, WITH THE RESEARCH
COMMUNITY.
TO HELP PROMOTE AND ENHANCE WHAT
WE DO NOT ONLY AT DPCPSI BUT
ACROSS ALL OF NIH.
AGAIN, WHAT WE SUPPORT ACROSS
DPCPSI IS REALLY AGENCY WIDE.
SO, I JUST WANTED TO GIVE A FEW
EXAMPLES OF SOME OF THE SELECT
PROGRAMS THAT WE'RE WORKING ON,
SOME EXCITING THINGS COMING
THROUGH AS OF LATE.
THE WHITE HOUSE RECENTLY
ESTABLISHED WOMEN'S HEALTH
RESEARCH INITIATIVE.
AND BACK IN MARCH THE PRESIDENT
SIGNED A NEW EXECUTIVE ORDER
THAT HELPED TO SPUR INNOVATION
AND UNLEASH TRANSFORMATIVE
INVESTMENT TO HELP CLOSE
RESEARCH GAPS AND IMPROVE
WOMEN'S HEALTH.
WHEN THEY PUT THIS OUT THEY
LAUNCHED 20 NEW ACTIONS
INCLUDING MANY BY NIH.
AND WE'RE SORT OF A LEADER IN
THIS EFFORT, AS YOU MIGHT
IMAGINE, JUST GIVEN THE TOPIC
AND SOME OF THE THINGS THAT WE
HAVE SO FAR DONE AND LAST WEEK
WAS NATIONAL WOMEN'S HEALTH
WEEK, WE HAD A LOT OF VARIOUS
ACTIVITIES GOING ON.
WE HAD THE PINN SYMPOSIUM, PUT
OUT RECORDS, BIENNIAL REPORT ON
STRATEGIC HEALTH AND NEW PLAN ON
WOMEN'S HEALTH, THERE WAS A LOT
GOING ON, AN EXCITING WEEK FOR
US LAST WEEK.
THINKING MORE SPECIFICALLY ABOUT
THE EXECUTIVE ORDER, WE PUT OUT
A NEW NIH-WIDE WOMEN'S HEALTH
RESEARCH NOSI, THAT HELPED TO
LINK ALL OF THE PARENT FUNDING
OPPORTUNITIES ACROSS NIH AND IT
WAS ALSO A GREAT OPPORTUNITY
WHERE ALL THE INSTITUTES AND
CENTERS INCLUDING NIA PUT
EMPHASIZE ANDS ECHO AND
HIGHLIGHT PRIORITIES IN WOMEN'S
HEALTH AND WHAT THEY ARE
INTERESTED IN SEEING COME
FORWARD THROUGH ALL THOSE PARENT
FUNDING OPPORTUNITY
ANNOUNCEMENTS.
WE ALSO LAUNCHED OUR FIRST EVER
PATHWAYS TO PREVENTION SERIES ON
MENOPAUSE, MANAGING
MENOPAUSE-RELATED ISSUES KICKING
OFF.
WE WORKED WITH AHRQ AND ACROSS
INTERAGENCY TO DO THESE PATHWAYS
TO PREVENTIONS, ULTIMATELY AFTER
THE END OF A YEAR AND A
HALF-LONG PROCESS WE'LL HAVE A
REPORT THAT WE'LL PUT FORWARD
WITH RECOMMENDATIONS AND ACTION
PLAN FOR NEXT STEPS.
AND THEN THERE WAS A COMMITMENT
TO CONTINUING TO IMPROVE UPON
AND ACCELERATE WORK WE'RE DOING
IN THE SBIR/STTR SPACE WHEN IT
COMES TO WOMEN'S HEALTH.
AND NIH-WIDE COMMITTED TO
INCREASING THAT BY 50% OVER THE
NEXT SEVERAL YEARS.
ALL RIGHT.
TOTALLY SWITCHING GEARS, I'M
GOING TO HIGHLIGHT A FEW THINGS
THAT WE'RE WORKING ON HERE.
BUT I WANT TO HIGHLIGHT THE NEXT
TWO SLIDES, TWO OF THE THINGS
THAT MONICA, DR. BERTAGNOLLI IS
EXCITED ABOUT, VERY MUCH HER
PRIORITIES AS SHE STEPPED INTO
HER NEW ROLE AS NIH DIRECTOR.
THE FIRST ONE IS THINKING ABOUT
HOW WE CAN HELP TO ADDRESS THIS
PROBLEM THAT'S ON HERE THAT WE
ALL CAN APPRECIATE, WHICH IS THE
DECLINING HEALTH OF THE U.S.
POPULATION AND IN PARTICULAR
THAT DECLINE BEING STEEPEST
AMONGST THOSE UNDERSERVED AND
UNDERREPRESENTED.
BECAUSE THOSE PEOPLE TEND TO
HAVE THE GREATEST, YOU KNOW,
HEALTH DISPARITIES, SO WE WANT
TO MAKE SURE THE WORK WE'RE
DOING AT NIH IS BEING ACCESSIBLE
TO EVERYONE.
AND THAT WE'RE GIVING EVERYONE
ACCESS TO THE OPPORTUNITY TO
PARTICIPATE IN CLINICAL RESEARCH
AND CLINICAL TRIALS.
SO, WE WANT TO MAKE SURE WE'RE
GOING TO BE ADDRESSING THE
CONCERNS OF THE COMMUNITY.
SO THIS IS SOMETHING THAT WE'RE
BUILDING OUT, A CLINICAL
RESEARCH NETWORK IN PRIMARY CARE
SETTINGS, TO REALLY HELP BUILD
UP THIS NETWORK THAT WILL BE
DISEASE AGNOSTIC.
IT WILL BE REALLY FOCUSING ON
IMPROVING HEALTH AND NOT ON
NECESSARILY TACKLING A
PARTICULAR DISEASE.
AGAIN, TRYING TO ADDRESS THE
QUESTIONS AND THE CONCERNS THE
COMMUNITIES THEMSELVES HAVE.
WE'LL CREATE A SUITE OF OPTIONS
SO THE SITES THAT ARE INVOLVED
CAN CHOOSE TO PARTICIPATE IN
PARTICULAR STUDIES, OR NOT, AND
FOCUS IN ON THOSE ONES THAT BEST
MEET NEEDS OF THEIR COMMUNITY.
WE'RE ALSO THINKING ABOUT HOW WE
CAN INTEGRATE INNOVATIVE
RESEARCH DESIGNS INTO THIS AND
HELP TO THINK THAT NEW WAYS THAT
WE CAN IMPROVE CLINICAL RESEARCH
AND CLINICAL CARE IN REAL WORLD
SETTINGS.
CREATING FOUNDATION FOR
SUSTAINED AND SUSTAINABLE
ENGAGEMENT WITH COMMUNITIES.
SO, WE WANT TO MAKE SURE WE'RE
NOT GOING TO POP IN, POP OUT.
ONE THING WE HEAR OVER AND OVER
AGAIN FROM COMMUNITIES IS THAT
WE NEED TO MAKE SURE THAT WE CAN
BUILD RELATIONSHIPS AND CONTINUE
TO BUILD TRUST AND SO WANT TO
MAKE SURE THIS EFFORT IS GOING
TO BE DURABLE, THAT IT ISN'T
GOING COME IN AND DISAPPEAR WHEN
THE STUDY ENDS, FOR INSTANCE.
IT WILL BE A LONG-TERM EFFORT
AND COMMITMENT THAT WE'RE
PUTTING FORWARD.
SO, WE'RE STARTING SMALL, OR AS
WE LIKE TO SAY, NARROW.
AND MAKING SURE THAT WE CAN DO
THIS EFFICIENTLY AND
EFFECTIVELY, AND PROVE SUCCESS
IN OUR FIRST FISCAL YEAR.
SO WE ALREADY HAVE A ROA ON THE
STREET, APPLICATIONS ARE DUE
JOAN 14, TO FUND A FEW SITES, A
HANDFUL OF SITES THIS YEAR.
FISCAL YEAR 2024.
SO THAT'S WHY THE DOLLAR AMOUNT
IS STILL FAIRLY SMALL.
THIS IS KIND OF THE BUILDING
YEAR WITH THIS EFFORT, AND THEN
WE'LL CONTINUE TO EXPAND IN 25
AND HOPEFULLY RAMP IT UP IN THE
COMING FISCAL YEARS.
ALL RIGHT.
AND THEN ONE OF THE OTHER THINGS
THAT I THINK IS REALLY SALIENT
AND DOES RELATE IN SOME WAYS TO
THE PRIMARY CARE NET BECAUSE WE
HAVE ALL THESE DATA THAT ARE IN
CLINICAL CARE SETTINGS AND WE
NEED TO PULL THOSE OUT AND ALLOW
ACCESS TO THAT VERY EFFICIENTLY.
AND EASILY.
AND SO ONE OF THE THINGS THAT
WE'RE WORKING ON IS TO HELP TO
PROVIDE AN EASIER MECHANISM FOR
THAT TO BE AVAILABLE.
AND WE'RE WORKING ACROSS ALL OF
HHS ON THIS, SO WORKING WITH
OTHER FEDERAL AGENCIES TO HELP
FACILITATE THIS EFFORT WHERE
WE'LL HELP TO INCREASE DATA
QUALITY AND ACCESSES DATA,
HOPEFULLY ELIMINATE COSTLY DATA
FORMATTING AND COLLECTION
REDUNDANCIES THAT WE'VE HEARD A
LOT ABOUT, JUST MAKE IT EASIER
TO ACCESS.
AND THERE ARE RIGHT NOW, WE'RE
SORT OF USING THE MOTTO SELECT
ONCE, USE NUMEROUS TIMES, WITHIN
THE DATA OPPORTUNITY SOMETHING
THEY SAY, TRYING TO FIGURE OUT A
WAY WE CAN LEVERAGE ONE PATHWAY
TO COLLECT DATA AND HAVE IT BE
ACCESSIBLE TO MANY PEOPLE FOR
MANY USES.
AND ELIMINATE SOME REDUNDANCIES.
YOU CAN SEE HERE ON THE RIGHT
SIDE OF THE SCREEN SOME OF THE
THINGS WE'RE THINKING ABOUT IN
TERMS OF LAUNCHING
PROOF-OF-CONCEPT EFFORTS TO
DEMONSTRATE SUCCESS IN THIS
SPACE AND WE'RE WORKING WITH CDC
AND FDA ON A FEW THINGS TO TRY
TO HELP US MODERNIZE DATA
COLLECTION FOR ONE OF THE NCI
PROGRAMS, THE SEER REGISTRY,
THINKING ABOUT HOW WE DO THIS
FORK POST-MARKET DATA
COLLECTION, IN PARTICULAR THE
MODEL THAT WE'RE KIND OF
NARROWING IN ON IS USING GLP-1
RIGHT NOW.
SO HOT AND SO BIG.
AS SOMEONE WHO STUDIED GLP-1 IN
MY POSTDOC, SIDE NOTE, YOU CAN
HAVE THAT TALK AT THE DINNER
TABLE WITH GRANDMA AND THEY
HEARD OF GLP-1.
WE'RE EXCITED ABOUT THIS EFFORT,
TRYING TO STREAMLINE DATA ACCESS
AND ACCESSIBILITY TO
RESEARCHERS.
AND THEN ONE OF THE OTHER THINGS
I WANT TO MAKE SURE TO HIGHLIGHT
IS THE INCLUDE PROJECT,
SOMETHING THAT WAS MENTIONED
EARLY THAT RICHARD AND I
CO-CHAIR WITH DIANA BIANCHI AND
GARY GIBBONS.
IT'S FOCUSED ON HELPING TO
INVESTIGATE CONDITIONS THAT
AFFECT INDIVIDUALS WITH DOWN
SYNDROME.
AND OF COURSE THERE'S LOTS OF
APPLICABILITY TO THAT WITH THE
GENERAL POPULATION.
THIS PROGRAM LAUNCHED IN 2018,
AND SO FAR HAS FUNDED OVER 330
AWARDS.
AND WE'RE REALLY TRYING TO BUILD
UP THE COHORT THAT WE HAVE
WITHIN THIS PROGRAM TO INCREASE
THE FOCUS ON BEING ABLE TO
ANSWER SOME OF THOSE CLINICAL
QUESTIONS AND BEING ABLE TO
UNDERSTAND, YOU KNOW, NOT JUST
-- AND ADDRESS NOT JUST ISSUES
THAT IMPACT THOSE WITH DOWN
SYNDROME BUT TO UNDERSTAND WHY
THERE ARE SORT OF PREVENTIVE
ASPECTS OF THE DISEASE,
DEVELOPING CERTAIN CANCERS, LOTS
OF APPLICABILITY BEYOND JUST
DOWN SYNDROME BUT IT'S REALLY A
GREAT PROGRAM THAT I THINK WE'RE
REALLY PROUD OF SOME OF THE WORK
THAT IT'S BEEN DOING OVER THE
LAST SEVERAL YEARS.
OKAY.
AND THEN I WANT TO GIVE A COUPLE
LITTLE EXAMPLES OF SOME OTHER
THINGS THAT WE'RE WORKING ON
WITHIN DPCPSI.
WE ARE -- WE'VE HEARD THAT
THERE'S BEEN A LOT OF INTEREST
ACROSS THE AGENCY AND HELPING TO
FIGURE OUT WAYS TO WORK WITH
TRIBAL COMMUNITIES, AND RESPECT
THEIR LAWS AND REGULATIONS AND
IN PARTICULAR THE SOVEREIGNTY
THAT THEY HAVE.
SO WE'RE DEVELOPING AN
INDIGENOUS DATA SOVEREIGNTY
POLICY THAT WILL HELP US MANAGE
THIS ACROSS THE BOARD.
ONE OF THE OTHER THINGS THAT
WE'RE WORKING ON IS ADDRESSING
SOME CONCERNS FROM THE COMMUNITY
WRIT LARGE ABOUT NON-HUMAN
PRIMATE, AND SO WE'RE WORKING
RIGHT NOW ON AN ANALYSIS STUDY
WE HOPE WILL BE OUT PRETTY SOON.
THAT HELPS US KIND OF JUST -- IT
SETS THE STAGE FOR WHERE WE ARE
ACROSS THE BOARD FOR MEDICAL
RESEARCH COMMUNITY UTILIZING NHP
MODELS, THINKING ABOUT WAYS THIS
WILL INFORM STRATEGIC MANAGEMENT
PLANNING THAT WE'RE DOING ACROSS
NIH.
AND THEN FINALLY NEW APPROACH
METHODS, WE'RE LEADING
IMPLEMENTATION PLAN FOR THE
DIRECTORS WORKING GROUP THAT PUT
FORWARD GREAT AND SPECIFIC
RECOMMENDATIONS FOR HOW WE CAN
THINK ABOUT USING IN SILICO AND
CHEMICO, AND IN VITRO TECHNIQUES
TO BE ABLE TO EITHER VALIDATE
OR, YOU KNOW, BE COMPLEMENTARY
TO THE EXISTING ANIMAL MODELS
THAT WE HAVE.
AND WITHIN THE COMMON FUND WE'VE
ACTUALLY LAUNCHED A PROGRAM
CALLED COMPLEMENTARY, THAT'S
TRYING TO PUSH FORWARD THIS AREA
OF SCIENCE.
SO EXCITED TO SEE THAT BECAUSE
THAT'S STILL VERY NASCENT BUT
EXCITED TO SEE THE WORK THAT'S
GOING TO COME OUT OF THAT
PROGRAM AND MANY OTHER PROGRAMS
ACROSS NIH ALSO WORKING ON THIS.
AND MY VERY LAST SLIDE, I HATE
TO END ON THE CHALLENGES, BUT
I'LL FRAME THIS AS A CHALLENGE
IS US A AN OPPORTUNITY.
WE'RE ALWAYS THINKING ABOUT WAYS
IN WHICH WE CAN STREAMLINE AND I
THINK SOME OF THE THINGS THAT
WE'RE THINKING ABOUT IN TERMS OF
THE BUDGET CUT WE HAVE HAD FOR
FISCAL YEAR 24, ARE GREAT
OPPORTUNITIES FOR US TO TAKE
ANOTHER LOOK AT WHAT WE'RE
DOING.
BUT OUR "ALL OF US" RESEARCH
PROGRAM RECEIVES A 34% CUT,
COMMON FUND TOOK ABOUT A 7% CUT
FOR $50 MILLION.
THIS IS JUST SOMETHING THAT
AGAIN WE'RE NAVIGATING THIS YEAR
AND WE'RE ALSO COUPLING THAT
WITH A TIME OF GREAT TRANSITION
WITHIN THE DIVISION BUT ALSO
AGAIN A GREAT OPPORTUNITY IN THE
LAST YEAR, YEAR-AND-A-HALF,
WE'VE HAD FIVE NEW OFFICE
DIRECTORS COME ON BOARD, AND WE
CURRENTLY HAVE TWO VACANCIES
THAT WE'RE IN THE VARIOUS STAGES
OF THE SEARCH PROCESS TO BE ABLE
TO FILL.
AND SO THAT COUPLED WITH THE TWO
NEW OFFICES AND ONE NEW PROGRAM
THAT JOINED DPCPSI EXCITED TO
THINK ABOUT THE NEXT PHASE OF
THE WORK THAT WE'RE DOING AND
OPPORTUNITY AGAIN TO RETHINK AND
REFRESH AND GET FEEDBACK FROM
EVERYONE ON WHERE WE SHOULD
FOCUS SOME OF OUR EFFORTS AND
ATTENTION AND HOW WE CAN
STRENGTHEN WHAT WE'RE DOING.
WITH THAT, I WILL MAYBE OPEN UP
FOR QUESTIONS, OR TURN IT BACK
TO RICHARD TO FACILITATE.
>> I JUST WANT TO THANK YOU FOR
DESCRIBING WHAT I THINK YOU CAN
ALL SEE IS A HUGE, SOME MIGHT
SAY VAST AND EXTREMELY RELEVANT,
PART OF NIH THAT AFFECTS ALL OF
US.
SHARING THAT, WE'LL OPEN THAT TO
QUESTIONS, COMMENTS, PEOPLE
MIGHT HAVE FROM THE COUNCIL.
YES?
>> I'M REALLY EXCITED.
>> SPEAK IN THE MICROPHONE.
>> SORRY.
CAN YOU TALK ABOUT THE
INDIGENOUS DATA SOVEREIGNTY
POLICY, STATE LINE, WHAT'S THE
ADVANTAGE.
>> MAYBE INTRODUCE YOURSELF TOO
A LITTLE BIT OF YOUR BACKGROUND
BRIEFLY.
IN THIS CASE THE PARTICULARS.
>> CHAIR OF IRB FOR (INAUDIBLE)
NATION, WORKED WITH THEM FOR
ALMOST 30 YEARS.
SO YES.
I STARTED WHEN I WAS 10 YEARS
OLD.
[LAUGHTER]
>> I WAS GOING TO SAY 5, SO
YEAH, OKAY.
NO, THAT'S A GREAT QUESTION.
BECAUSE THIS IS SOMETHING -- SO
OUR TRIBAL HEALTH RESEARCH
OFFICE IS ONE OF OUR NEWER
OFFICES WITHIN DPCPSI, AND THAT
IS ALSO ONE OF THE OFFICES THAT
JUST HIRED A NEW OFFICE DIRECTOR
WITHIN THE LAST YEAR OR SO.
SHE STARTED I THINK LAST APRIL.
SO SHE IS ON BOARD DOING
LISTENING SESSIONS TRYING TO
UNDERSTAND FROM DIFFERENT
COMMUNITIES BOTH WITHIN NIH AND
WITHIN TRIBAL COMMUNITIES TO
FIGURE OUT KIND OF WHERE SOME OF
THE CHALLENGES ARE AND WHAT
KEEPS COMING UP IS HOW TO
NAVIGATE AND MANAGE TRIBAL DATA.
AND ESPECIALLY WHEN YOU THINK
ABOUT SOVEREIGNTY OF OWNERSHIP,
OF THOSE DATA, BY THE TRIBES BUT
ALSO OF THE INDIVIDUALS AND THEN
I KNOW IT GETS EVEN MORE
COMPLICATED WHEN WE TALK ABOUT
URBAN INDIANS AND WHEN DATA IS
NOT COLLECTED ON THE
RESERVATION.
SO THERE'S A LOT OF ISSUES THAT
ARE GOING INTO THE CONSIDERATION
OF TRYING TO DEVELOP A POLICY
FOR HOW WE ACROSS THE BOARD AT
NIH CAN, YOU KNOW, ADDRESS THAT
IN A UNIFORM WAY SO WITH EVERY
PROGRAM WE CREATE WE DON'T HAVE
TO DO A CONSULTATION FOR HOW
WE'RE SETTING SOMETHING UP.
WE CAN THINK ABOUT WAYS TO
STREAMLINE THE PROCESS AND
IMPROVE ACROSS THE BOARD WHAT
WE'RE DOING.
BUT ALSO MAKING SURE THAT WE'RE
CONSULTING WITH IT AND ENGAGING
WITH TRIBAL NATIONS AS RELEVANT.
>> I'VE SHARED THIS WITH FOLKS
IN OTHER FORUM.
CHEROKEE NATION IS THE ONLY
TRIBE IN THE NATION, A SEER
REGISTRY FUNDED BY NCI.
WE HAVE BEEN CONTRIBUTING OUR
CANCER DATA SINCE 1997.
I WAS THE FIRST P.I. ON THE
PROJECT.
AND THE MODEL THAT I PERSONALLY
LIKE IS THAT OUR DATA GOES TO
NCI AND SITS ON A DATA ISLAND.
JUST CHEROKEE DATA.
WE CONTROL AND HAVE OWNERSHIP OF
ACCESS TO DATA.
SO WHEN A RESEARCHER APPROACHES
US AND THERE'S A MUTUAL INTEREST
IN ALLOWING ACCESS TO RESEARCH
BECAUSE THEY HAVE SOMETHING
REALLY VALUABLE TO OFFER, WE
SIGN OFF AND THEY GET ACCESS TO
THE MATERIAL.
I DON'T KNOW IF THAT'S SOMETHING
THAT'S A MODEL YOU CAN USE AT
THE NATIONAL LEVEL, BUT IN A --
THAT HAS WORKED SO FAR SO THE
OWNERSHIP RESTS WITH THE
CHEROKEE NATION.
>> WITH THE TRIBE.
THAT'S GREAT.
THAT'S A MODEL I THINK THAT'S
BEEN I THINK UTILIZED FOR OTHER
PROGRAMS AS WELL.
>> OTHER QUESTIONS?
SANJAY?
>> THANK YOU.
GREAT PRESENTATION.
THANK YOU SO MUCH.
REALLY APPRECIATE THE
INFORMATION.
I THINK THE NEW INITIATIVE YOU
TALKED ABOUT DOING CLINICAL
RESEARCH AND PRIMARY CARE
SETTINGS IS REALLY NEEDED IN
MEDICAL FIELD.
WASN'T TO KNOW FROM YOU, THE
REAL WORLD DATA THAT YOU'RE
ATTEMPTING TO COLLECT
ELECTRONIC HEALTH RECORD BASED
DATA, CLAIMS DATA AND OTHER DATA
ALSO LINKED WITH THAT.
WOULD THE DATA COLLECTION MOVING
FORWARD, COULD THERE BE
DISEASE-SPECIFIC DATA
COLLECTION?
I KNOW SEERs IS FOR CANCER,
COULD THERE BE SOMETHING FOR
DEMENTIA, CARDIOVASCULAR
DISEASE, OR GENERAL DATA
COLLECTION AS RELATED TO HEALTH
CARE UTILIZATION AND SOME CARE
QUALITY OUTCOMES?
>> YEAH, SO LET ME ANSWER FROM
TWO PERSPECTIVES BECAUSE SOME OF
THE DATA WORK THAT WE'RE DOING
IS A DISTRICT PROGRAM FROM THE
PRIMARY CARE NETWORK.
WE SEE THEM CONVERGING BECAUSE
THE DATA WE'RE GENERATING FROM
THE PRIMARY CARE NETWORK IS
GOING TO BE DATA THAT IS
RELEVANT TO OUR DATA INITIATIVE.
THOUGH WE'LL HAVE THAT
INTERSECTION, THESE ARE BOTH
VERY NASCENT PROGRAMS.
LET ME ECHO THAT.
NO, I THINK ABSOLUTELY YOU HIT
ON KIND OF THAT EXACT IDEA FOR
THE PRIMARY CARE NETWORK AND
THAT WHAT WE WANT TO DO IS HAVE
THE COMMUNITY BE ABLE TO HAVE A
SUITE OF OPTIONS, ABLE TO
PARTICIPATE IN CERTAIN TRIALS OR
RESEARCH STUDIES, THAT THEY THEN
ARE ABLE TO SELECT BASED ON WHAT
THEY THINK THEY CAN DO IN THEIR
COMMUNITY, BASED ON WHAT THEY
ARE HEARING ARE NEEDED,
QUESTIONS TO ANSWER WITHIN THEIR
COMMUNITY.
THOSE COULD BE SPECIFIC
QUESTIONS AROUND ALZHEIMER'S
DISEASE, OR, YOU KNOW, CANCER
OR, YOU KNOW, ANY NUMBER OF
DISEASES OR CONDITIONS, WHEN WE
SAY DISEASE AGNOSTIC,
CROSS-CUTTING ACROSS MISSION
AREAS OF THE INSTITUTES AND
CENTERS, NOT NECESSARILY FOCUSED
ON ONE OR TWO OR A NUMBER OF
DIFFERENT DISEASE AREAS.
>> YOU PLAN TO CREATE A NATIONAL
NETWORK OF SITES?
>> YEAH, EVENTUALLY.
THAT'S THE ULTIMATE GOAL.
WE'RE GOING TO SMART SMALL BUT
YES, THE IDEA WOULD BE
EVENTUALLY WE WOULD BE ABLE TO
EXPAND THIS OUT SO WE'RE HITTING
NATIONAL.
I WILL SAY ONE OF THINGS I
DIDN'T NECESSARILY EMPHASIZE BUT
SHOULD HAVE IN THE PRESENTATION
WE'RE FOCUSING ESPECIALLY AT
FIRST ON RURAL POPULATION,
COMMUNITIES WHO REALLY NEED
ACCESS TO THESE STUDIES THE MOST
WE THINK.
>> AND I ASSUME THE FINAL THING
THERE WILL BE MONITORING OF DATA
COLLECTION AT THE SITES DONE
CENTRALLY BY NIH.
>> YEAH, WE'RE LEVERAGING AT
LEAST AGAIN TO START, WE'RE
LEVERAGING EXISTING NETWORKS AT
NIH.
SO NIGMS FUNDS ARE IDEA STATES,
CLINICAL AND TRANSLATIONAL
RESEARCH NETWORKS, WE HAVE THE
CTSAs, CLINICAL AND
TRANSLATIONAL SCIENCE AWARDS OUT
OF NCATS, AND THEN ONE OF THE
OTHER ELEMENTS THAT WE'RE
FOCUSING YOU ON IS PARTNERING
WITH PCORI, PCORnet, AND
REALLY KIND OF LEVERAGING THAT
INFRASTRUCTURE THAT ALREADY
EXISTS AND THE COMMITMENTS THAT
WE ALREADY HAVE IN THOSE
DIFFERENT AREAS, AND BEING ABLE
TO THEN KIND OF -- I DON'T WANT
TO SAY SUPPLEMENT, THAT IMPLIES
AN APPROACH FOR FUNDING, BUT
IT'S A WAY TO ADD ON AND
LEVERAGE THE WORK WE ALREADY
HAVE ONGOING IN THOSE AREAS.
MANY OF THOSE PROGRAMS HAVE BEEN
HELPING TO BUILD UP THE EHR
INFRASTRUCTURE IN A LOT OF
THOSE EFFORTS.
>> BEFORE WE -- ONE QUESTION
FROM THE CHAT, I'D LIKE TO ASK
FIRST AND WE'LL GO TO YOU.
THE QUESTION IS, OLDER PEOPLE
ARE ESPECIALLY VULNERABLE TO
EFFECTS OF CLIMATE CHANGE, DOES
DPCPSI ALSO STRATEGIZE ABOUT
CLIMATE CHANGE, BOTH RESEARCH ON
IT AND ALSO HOW RESEARCH
PROCESSES MIGHT BE PREPARED FOR
DISRUPTIONS TO RESEARCH STUDIES
AND CLINICAL TRIALS, SIMILAR TO
PREPARING FOR THE NEXT PANDEMIC
NIH RESEARCHERS COULD EVEN USE
THOSE DISRUPTIONS AS
OPPORTUNITIES TO LEARN ABOUT
RESILIENCE AND VULNERABILITY.
>> YEAH, NO, I THINK THAT'S A
GREAT QUESTION.
SO ONE OF OUR PROGRAMS WE HAVE
RUN OUT OF THE COMMON FUND,
AGAIN STILL A FAIRLY NEW STUDY,
CALLED COMPASS.
I'M BAD ABOUT REMEMBERING
ACRONYMS, A COMMUNITY-BASED
PROGRAM TO HELP THINK ABOUT
STRUCTURAL APPROACHES TO HOW WE
SUPPORT THE WORK THAT WE DO HERE
AT NIH AND ADDRESS SOME
HEALTH-RELATED QUESTIONS.
AND THINKING ABOUT THINGS LIKE
TRANSPORTATION AND HOUSING AND
ALL THOSE ISSUES THAT ARE TIED
TO, IN A WAY, AND THAT
DEFINITELY IMPACT PEOPLE'S
HEALTH BUT ARE NOT NECESSARILY
THINGS THAT WE ULTIMATELY
NECESSARILY FOCUS ON.
AND I THINK IN THE COMPASS
PROGRAM WE'LL SEE THINGS
RELEVANT TO THAT QUESTION, ASKED
ABOUT CLIMATE CHANGE AND THE
ENVIRONMENT.
>> THANK YOU FOR YOUR
PRESENTATION.
I'M THE PRESIDENT AND CEO,
NATIONAL HISPANIC COUNCIL ON
AGING.
YOU MENTIONED THE "ALL OF US"
PROJECT.
AND ITS CUTS.
WHAT MODIFICATIONS WILL YOU BE
MAKING AS A RESULT OF THOSE
CUTS?
>> YEAH, SO THE BUDGET CUT WE
TOOK THIS YEAR, FIRST LET ME
BACK UP AND SAY THIS WAS -- WE
KNEW THIS WAS COMING BECAUSE
THIS IS MONEY THAT IS FROM 21ST
CENTURY CURES SO WE KNEW IT WAS
ON A 10-YEAR HORIZON.
SO THIS YEAR THE CUT IS -- WELL,
YOU HEARD, IT'S THIRTY-SOMETHING
PERCENT, SIGNIFICANT, BUT WE'RE
ABLE TO NAVIGATE.
NEXT YEAR THE CUT IS MUCH, MUCH
STEEPER AND THE YEAR AFTER THAT
IT GOES JUST A LITTLE BIT
FURTHER AND GETS US BASICALLY AT
OUR BASE, WHICH IS BY THE TIME
WE THINK ABOUT GETTING TO THAT
PERIOD OF TIME WE'RE REALLY
GOING TO BE IN SORT OF
SUSTAINING THE WORK THAT WE'RE
CURRENTLY DOING AND SUSTAINING
THE PLATFORM THAT WE HAVE.
WHAT ULTIMATELY IS THE REALITY,
IT'S GOING TO SLOW DOWN,
TIMELINE TO ACHIEVING GOAL OF
RECRUITING A MILLION OR MORE
AMERICANS TO THE STUDY, SO RIGHT
NOW I THINK WE'RE AT ABOUT -- I
GOT AN UPDATE FROM JOSH THE
OTHER DAY, AROUND 800,000
PEOPLE.
WE'RE REALLY CLOSE CLOSE TO THE
ONE MILLION MARK, BUT IT'S GOING
TO SLOW DOWN THE WORK WE HAVE
PLANNED TO DO AND MAY HAVE AN
IMPACT ON LAUNCHING THE NEXT
INITIATIVE THAT WAS PLANNED,
FOCUSING ON PEDIATRICS.
>> I WOULD ADD "ALL OF US" IS AN
OPPORTUNITY FOR COLLABORATION
WITH INSTITUTES AND CENTERS TO
LEVERAGE "ALL OF US,"
COLLABORATE IN THEIR OWN EFFORTS
WHICH REPRESENT ANOTHER SOURCE
POTENTIALLY OF FUNDING FOR AREAS
OF JOINT AND COME AN INTEREST
ACROSS NIH.
>> YEAH, AND WE CALL THEM
ANCILLARY STUDIES THAT WE'RE
WORKING WITH INSTITUTES AND
CENTERS ON, THOSE HAVE ONLY BEEN
KIND OF RAMPING UP OVER THE LAST
MAYBE TWO OR SO YEARS.
AND I THINK WE'RE OPTIMISTIC
WE'LL CONTINUE TO SEE A LOT MORE
ANCILLARY STUDIES BEING INVOLVED
IN THE NETWORK GOING FORWARD.
>> ONE OVERARCHING QUESTIONS,
IT'S MORE ON THE LINES OF
PRIORITIZATION AND
SUSTAINABILITY FOR COMPLEXITY OF
OFFICE OF DPCPSI, 16 DIFFERENT
OFFICES, ALL WITH DIFFERENT
AGENDAS.
HOW DO YOU NAVIGATE WITH SUCH A
COMPLEX GROUP ALL THOSE
DIFFERENT PRIORITIES,
LIMITATIONS ON THE BUDGET, HOW
TO SUSTAIN EXISTING PROGRAMS OR
THOSE PROGRAMS THAT ARE JUST
PILOTS AND THINGS LIKE THAT AND
HOW TO FURTHER THEM ALONG.
>> I SHOULD MAKE SURE TO
EMPHASIZE STRUCTURE WITHIN
DPCPSI, MOST OFFICES ARE
CONGRESSIONALLY MANDATED AND
PLACED WITHIN DPCPSI.
SO LET ME JUST SAY THAT
OUTRIGHT.
ALIGNMENT WITH STRUCTURE ACROSS
NIH, 27 INSTITUTES AND CENTERS
BEING CONGRESSIONALLY MANDATED.
THEY EACH HAVE THEIR OWN, FOR
THE MOST PART, THERE ARE A FEW
EXCEPTIONS, BUT THEY EACH HAVE
THEIR OWN LINE ITEM
APPROPRIATION.
SOME HAVE SPECIFIC THINGS THEY
ARE TASKED WITH DOING, OTHERS
HAVE MORE FLEXIBILITY.
ONE THING WE'VE BEEN TALKING
ABOUT A LOT SINCE I STARTED OVER
THE LAST SIX MONTHS HERE AT
DPCPSI IS TO THINK ABOUT WAYS
THAT WE CAN WORK TOGETHER AND
LEVERAGE THE SCIENCE THAT WE'RE
DOING ACROSS THE BOARD BECAUSE
AS I SAID ALL OF THE AREAS WE'RE
WORKING ON ARE SUPPOSED TO BE
CROSS-CUTTING SUPPORTING WORK
WHAT CENTERS DO, AS WE'RE
THINKING ABOUT WOMEN'S HEALTH
ALSO ASKING QUESTIONS RELATED TO
BEHAVIORAL AND SOCIAL SCIENCES
RESEARCH, THINKING ABOUT THOSE
QUESTIONS AS WELL AS QUESTIONS
AROUND DISEASE PREVENTION AND
WHERE THOSE INTERSECTION POINTS
ARE SO WE CAN MAXIMIZE THE SORT
OF IMPACT THAT WE HAVE NOT JUST
WITHIN DPCPSI BUT WORKING WITH
I.C.s AND ACROSS THE BOARD FOR
THE COMMUNITY.
>> NANCY FROM AMERICAN GERIATRIC
SOCIETY.
I'M REALLY INTERESTED IN THE
PRIMARY CARE NETWORK BUT ALSO
THE DATA INFRASTRUCTURE AND I
KNOW THEY ARE NOT COMPLETELY
INTERTWINED.
BUT SPECIFICALLY, WE COORDINATE
GERIATRIC ENHANCEMENT PROGRAM,
WE HAVE A COORDINATING CENTER
FOR THAT.
ONE OF THE THINGS WE HEAR, THE
DIFFICULTY THEY HAVE IN
STRUCTURING EHRs TO REPORT
DATA INTO A CENTRAL REPOSITORY
OF ANY SORT OR EVEN JUST TO BE
ABLE TO PULL DATA.
I'M WONDERING WITHIN THE CONTEXT
OF SETTING UP SUCH A BIG DATA
INFRASTRUCTURE IS THERE GOING TO
BE FUNDING FOR PRIMARY CARE
PRACTICES AND FQHCs TO BE ABLE
TO SET THEMSELVES UP TO SUBMIT
DATA?
>> YEAH, THAT'S A GREAT POINT.
THAT'S SOMETHING, THIS IS ONE OF
THOSE AREAS WHERE THOSE TWO
DEFINITELY INTERSECT.
WE'VE BEEN THINKING ABOUT THAT A
LOT.
AND ONE OF THE MANY REASONS WHY
WE'RE FOCUSING OUR IDeA
STATES, CLINICAL AND
TRANSLATIONAL NETWORK, THEY
PARTNERED WITH OFFICE OF DATA
STRATEGY TO BUILD CAPABILITIES
IN SOME SETTINGS SO WE'RE
STARTING TO SEE A LITTLE BIT
ABOUT WHY HAS WORKED AND WHAT
HASN'T WORKED AND WE'RE KIND OF
LOOKING AT THIS WHOLE EFFORT,
ACTUALLY BOTH REALLY, AS SORT OF
TRYING TO FIGURE OUT WHAT WORKS
AND WHAT WORKS BEST AND WE'RE
TRYING TO BUILD IN PARTICULAR
THE PRIMARY CARE NETWORK TO BE
AS NIMBLE AND FLEXIBLE AS
POSSIBLE SO WE CAN ADAPT TO
THINGS THAT COME UP LIKE IF THAT
BECOMES A MAJOR, MAJOR ISSUE,
HOW CAN WE THEN KIND OF SHIFT
OUR FOCUS, AT LEAST PART OF THE
FOCUS, TO SUPPORT THOSE SITES
DIFFERENTLY OR TO BE ABLE TO PUT
MORE EFFORT ON BEING ABLE TO
SUPPORT THE TRANSITION FROM
PAPER WHICH WE'VE HEARD FROM
SOME OF THE SITES THAT WE'VE
BEEN TALKING TO THAT SOME ARE
STILL ON PAPER.
TO BE ABLE TO GET IT DIGITAL,
MUCH LESS ANYTHING FURTHER DOWN
THE ROAD AND MORE COMPLICATED.
SO WE'RE GOING TO BE LEARNING A
LOT AS WE GO ALONG, AND I SHOULD
MENTION TO YOU ALL THAT WE'RE
HAVING A LISTENING SESSION FOR
THE ROA, FOR THE PRIMARY CARE
NETWORK, HAPPENING TODAY BUT
WE'RE PLANNING FOR A BIG KIND OF
WORKSHOP TYPE LISTENING SESSION.
I DON'T KNOW WHAT WE'RE GOING TO
CALL IT.
BUT A BIG EVENT ON JUNE 7 WHERE
WE'RE GOING TO TALK A LOT MORE
ABOUT THE WORK THAT WE'RE DOING
AND ABOUT WHAT WE'VE BEEN
HEARING FROM THE COMMUNITIES AND
HAVE AN OPPORTUNITY TO BE ABLE
TO HAVE SOME REALLY OPEN PUBLIC
DISCUSSIONS ABOUT THIS.
I WOULD ENCOURAGE YOU TO SHARE
THAT WITH YOUR COLLEAGUES AND
TUNE IN AND LET US KNOW, WE
WOULD APPRECIATE YOUR FEEDBACK
ON ANYTHING BECAUSE THOSE
ISSUES, YOU'RE NOT ALONE.
WE'VE HEARD THEM MANY TIMES.
>> TARA, AS WE GET ANNOUNCEMENTS
OF THEM WE'LL CIRCULATE
SPECIFICALLY TO AUDIENCES,
INCLUDING YOU, OUR COUNCIL
MEMBERS.
>> ALL RIGHT.
IF THERE'S NO FURTHER QUESTIONS,
TARA, WE THANK YOU VERY MUCH.
VERY INFORMATIVE.
>> THANK YOU ALL.
I APPRECIATE THE OPPORTUNITY.
THANK YOU.
>> ALL RIGHT.
AND THEN THAT CONCLUDES OUR
COUNCIL MEETING FOR THIS ROUND.
AGAIN, I WANT TO THANK OUR
COUNCIL MEMBERS, ESPECIALLY, FOR
THE WORK THEY PUT IN, THEIR
ADVICE AND CONDUCT FOR THIS
MEETING.
WE GREATLY APPRECIATE IT.
SAFE TRAVELS BACK.
>> THANKS, ALL OF YOU, FOR AN
EXTRAORDINARILY INTERACTIVE
MEETING, AND TARA, FOR A GREAT
FINISH.
ONE LAST TIME, SESSION'S CLOSED.
[END OF PROGRAM]