THANKS, EVERYONE, FOR GETTING
TOGETHER FOR THE THIRD DAY OF
OUR SUMMIT.
AS WE'VE TALKED PREVIOUSLY, THIS
IS INCREDIBLY IMPORTANT ACTIVITY
FOR US AS IT GENERATES THE PLANS
THAT WE USE TO FUND RESEARCH ON
ALZHEIMER'S AND RELATED
DEMENTIAS AND HAS BLOSSOMED DUE
TO THE HELP OF THE SUMMIT AND
THERE'S BEEN CONSIDERABLE
FUNDING TO CAME TO NINDS AND
AGING INSTITUTE.
WE AT NINDS MANAGE ABOUT 10% OF
THOSE FUNDS FOR ALZHEIMER'S
DISEASE/RELATED DEMENTIAS, AND
IT'S CONSIDERABLE INVESTMENT
THAT HAS ALLOWED US TO DO
INNOVATIVE THINGS BUT WE REQUIRE
YOUR INPUT TO STAY INNOVATIVE AS
WE MOVE INTO THE FUTURE.
THE SESSION TODAY FOCUSES ON
HEALTH DISPARITIES IN
ALZHEIMER'S DISEASE-RELATED
DEMENTIAS WHICH INCLUDES MIXED
DEMENTIAS BUT CONTRIBUTORS.
THERE HAS BEEN CONSIDERABLE
CHANGES HERE AT NIH, BUT IT'S
BEEN UNDERLINED MULTIPLE TIMES
BY DR. BHATTACHARYA, OUR NIH
DIRECTOR, THAT TRYING TO SOLVE
THE PROBLEMS OF HEALTH
DISPARITIES IN THIS COUNTRY
REMAINS A VERY HIGH PRIORITY,
CERTAINLY FOR NINDS A VERY HIGH
PRIVATE IN THE ALZHEIMER'S
DISEASE-RELATED DEMENTIA SPACE.
I WANT TO THANK YOU FOR THE WORK
YOU'VE DONE, KATE, FOR OVERALL
CHAIRING THE SUMMIT AND MARIA
GLYMOUR AND KACIE DETERS FOR THE
SESSION 8 AND FARAH AND JONATHAN
FOR SESSION 9.
LET ME TURN IT OVER TO KATE WITH
THAT.
>> I'M REALLY EXCITED TO BE HERE
FOR THE THIRD AND FINAL DAY OF
THE 2025 SUMMIT.
WE HELD OUR FIRST TWO SESSIONS
ON APRIL 29th AND APRIL
30th.
AND TO REVIEW BRIEFLY THE TOPICS
WE COVERED, WE TALKED ABOUT
MULTIPLE DEMENTIAS, RESEARCH FOR
IMPLEMENT OF DISCOVERIES INTO
PRACTICE, FRONTOTEMPORAL
DEMENTIAS, POST-TRAUMATIC BRAIN
INJURY, WE TALKED ABOUT LATE OR
TDP-43 IN COMMON LATE-ONSET
DEMENTIA.
SECOND DAY WE COVERED MED BASIC
AND CLINICAL DISCOVERY RESEARCH,
LEWY BODYING DEMENTIA, VASCULAR
CONTRIBUTIONS AND COGNITIVE
IMPAIRMENTS AND HAD WONDERFUL
PUBLIC ENGAGEMENT ACROSS BOTH
DAYS, LISTENING AND
INCORPORATING INPUT WE'VE
RECEIVED SO FAR.
IF YOU MISSED THE FIRST TWO
DAYS, YOU CAN WATCH AT THE LINKS
PROVIDED.
TODAY WE HAVE OUR TWO FINAL
REALLY EXCITING AND
CROSS-CUTTING SESSIONS THAT
YOU'LL HEAR ABOUT AND THERE WILL
BE A CHANCE FOR PUBLIC INPUT
AFTER EACH OF THE SESSIONS, AS
WELL AS A FURTHER PUBLIC INPUT
SESSION AT THE END WHERE WE
ENCOURAGE AND WELCOME INPUT ON
ANY OF THE TOPICS DISCUSSED AT
THIS MEETING.
SO WITH THAT, I WILL TURN IT
OVER TO MARIA GLYMOUR AND KACIE
DETERS TO INTRODUCE OUR FIRST
SESSION TODAY.
>> THANK YOU, KATE, FOR THAT
HANDOFF.
IT'S A PLEASURE TO BE HERE.
THANK YOU, EVERYONE, FOR JOINING
THIS DISCUSSION.
WE'VE HAD AN AMAZING TEAM.
I WANT TO ACKNOWLEDGE IN
PARTICULAR MY CO-CHAIR, DR.
DIETERS, AND THE OTHER SPEAKERS
TODAY.
IT FALLS TO ME TO INTRODUCE
MOTIVATION AND OVERARCHING
MOTIVATION FOR THIS
RECOMMENDATION GROUP, RESEARCH
TO IMPROVE OUTCOMES FOR
REPRESENTATIVE POPULATIONS AT
RISK AND LIVING WITH ADRD.
NEXT SLIDE.
JUST DISCLOSURES, I RECEIVE
FUNDING FROM NIH, ROBERT WOOD
JOHNSON FOUNDATION, NO FUNDING
FROM INDUSTRY.
NEXT SLIDE.
REALLY THE IMPORTANT MOTIVATIONS
HERE ARE THAT SOME GROUPS OF
PEOPLE HAVE SYSTEMATICALLY
HIGHER RISK OF ALZHEIMER'S
DISEASE AND RELATED DEMENTIA OR
WORSE PROGNOSIS.
SOME GROUPS FOR WHOM THIS IS
DOCUMENTS, ALSO GROUP OF PEOPLE
WITH VERY LIMITED ACCESS AND
REPRESENTATION IN RESEARCH SO WE
DON'T KNOW IF THEY HAVE ELEVATED
RISK OR NOT.
WE WILL BE INCLUDING BOTH
INDIVIDUALS FROM GROUPS WITH
ESTABLISHED UNEQUAL BURDEN AND
FOR GROUPS WITH A GAP WE DON'T
KNOW IF IT IS SUBSTANTIAL.
RIGHT NOW THE EVIDENCE IS CLEAR
IT AFFECTS EVERYONE, NOBODY IS
LEFT UNSCATHED WHETHER DISEASE
AFFECTS YOU INDIVIDUALLY OR
PEOPLE YOU LOVE AND YOUR FAMILY,
IT'S ONE OF THE MOST PROFOUND
PUBLIC HEALTH CHALLENGES WE'RE
FACING.
ON TOP OF THIS, SOME GROUPS FACE
SPECIAL AND ELEVATED RISK AND
THOSE PATTERNS SUGGEST THOSE ARE
SOCIAL DETERMINANTS OF
ALZHEIMER'S DISEASE AND DEMENTIA
RISK.
WHETHER THOSE GROUPS ARE BASED
ON EDUCATION, GEOGRAPHY, SEX,
RACE AND ETHNICITY, AND OTHER
DIMENSIONS.
NEXT SLIDE PLEASE.
AMONG THE MANY POSSIBLE SLIDES
WE COULD HAVE SHOWN TO
ILLUSTRATE THESE DISPARITIES
ACROSS GROUPS, I LIKE THIS
SLIDE, WORK USING DATA FROM THE
KAISER PERMANENTE NORTHERN
CALIFORNIA MEMBERSHIP FROM DR.
MAYEDA.
THIS SHOWS STARK DIFFERENCES IN
INCIDENCE RATES OF DEMENTIA
ACROSS GROUPS.
I WANT TO DRAW YOUR ATTENTION TO
THE GROUP ON THE RIGHT WHERE YOU
SEE FOR ASIAN AMERICANS A
MARKEDLY LOWER INCIDENCE RATE
THAN FOR ANY OTHER RACIAL/ETHNIC
GROUP IN THE COUNTRY.
NEXT SLIDE.
AND WHEN WE ASK WHY THESE ARE
HAPPENING, WHY THESE
INEQUALITIES ARE HAPPENING, WHAT
IS DRIVING THESE DISPARITIES,
IT'S IMPORTANT TO UNDERSTAND
THAT MANY, MANY RISK FACTORS ARE
DIFFERENTLY DISTRIBUTED,
PROCESSES ARE DRIVING
DISTRIBUTION OF RISK FACTORS,
DIFFERENTIALLY, ACROSS GROUPS.
AND SO ON THE LEFT YOU SEE THE
VERY FAMOUS PICTURE FROM "THE
LANCET," THE LIVINGSTON REPORT
WITH ATTRIBUTING 45% ACROSS
KNOWN RISK FACTORS STARTING WITH
EDUCATION.
EDUCATION IS SOCIALLY
DISTRIBUTED RESOURCE BUT IF YOU
THINK ABOUT EVERY ONE OF THOSE
RISK FACTORS, WHETHER HEARING
LOSS, TRAUMATIC BRAIN INJURY,
DIABETES, HYPERTENSION, EVERY
ONE OF THOSE IS ALSO ITSELF
DIFFERENTIALLY DISTRIBUTED.
THIS PICTURE SHOWS WORK
EVALUATING RISK FACTORS ACROSS
ASIAN SUBGROUPS, AND COMPARING
TO EUROPEAN ANCESTRY
INDIVIDUALS, AND BUT WE COULD DO
THIS FOR ALMOST ANY PATTERN
WHERE EVERY SINGLE RISK FACTOR
IS DISTRIBUTED DIFFERENTIALLY
ACROSS GROUPS.
AND WHAT THAT REALLY MEANS IS
THAT SOME GROUPS ARE AT HIGHER
RISK SO WE CAN'T JUST START WITH
THE MOST PROXIMAL RISK.
WE HAVE TO ASK WHY THEY ARE
DIFFERENTIALLY DISTRIBUTED.
NEXT SLIDE PLEASE.
HEALTH DISPARITIES ARE
FRUSTRATING AND A CHALLENGE, I
ALSO FEEL VERY STRONGLY THESE
ARE AMONG OUR GREATEST
OPPORTUNITIES FOR PROGRESS
TOWARDS ELIMINATING DEMENTIA.
WHEN WE SEE DISPARITIES OBSERVED
BETWEEN GROUPS BASED ON SOCIALLY
CREATED VARIABLES WITH NO BASIS
IN BIOLOGY, IT MEANS WE CAN DO
BETTER AND THAT WE MAY ALREADY
HAVE THE SOLUTION WITHIN OUR
REACH.
IF EVERYONE IN THE UNITED STATES
HAD THE SAME DEMENTIA RISK AT
LOWEST RISK GROUP MAJORITY OF
CASES WOULD BE ELIMINATED OR
DELAYS.
FOR MANY HEALTH OUTCOMES WE HAVE
MADE TREMENDOUS PROGRESS
REDUCING HEALTH DISPARITIES AND
CAN DO THE SAME FOR DEMENTIA.
OUR WORKING GROUP HAS FOCUSED ON
THE TOP RESEARCH PRIORITIES TO
MOVE TOWARDS THAT GOAL.
NEXT SLIDE PLEASE.
I WANT TO ACKNOWLEDGE THE GROUP,
THIS HAS BEEN A LIVELY TIME TO
BE FOCUSED ON THIS TOPIC AND I
THINK THE GROUP DID A PHENOMENAL
JOB TALKING ABOUT HOW TO
PRIORITIZE IN AREAS AND
DIRECTIONS THAT WE HAD THE MOST
LIKELIHOOD OF MAKING PROGRESS
AND MAKING A DIFFERENCE, KEEPING
CORE VALUES CLOSE TO OUR HEARTS.
THANK YOU TO MY AMAZING
COLLEAGUES ESPECIALLY CO-CHAIR
KACIE DETERS.
NEXT SLIDE PLEASE.
WITH THAT I WANT TO INTRODUCE
THE FIRST TOP PRIORITY
RECOMMENDATION.
NEXT SLIDE.
THE WORDING OF WHICH, THIS IS
PRIORITY 1 RECOMMENDATION, IN
THE ACCESS CARE AND TREATMENT
DOMAIN, TO PRIORITIZE
INFRASTRUCTURE AND POLICY
RESEARCH TO UNDERSTAND
INDIVIDUAL, COMMUNITY, SOCIETAL
DRIVERS ACROSS CARE AND ACCESS
TO TREATMENT OF CARE TO OPTIMIZE
QUALITY OF LIFE AMONG AMONG
INDIVIDUALS.
HOW DO WE GO ABOUT THAT?
THE KEY STEPS, ONE IS TO REALLY
DEVELOP AND REVIEW NATIONAL
STANDARDS FOR HOW WE QUANTIFY
DEMENTIA COST AND OUTCOMES
RELEVANT FOR EVERYONE IN THE
UNITED STATES.
AS WELL AS FOR POPULATIONS
DISPROPORTIONATELY AFFECTED BY
DEMENTIA.
THE NEXT STEP IS AGREE ON COMMON
DATA ELEMENTS WE CAN INCLUDE
INTO A NATIONAL DATA REPOSITORY,
YOU'LL HEAR THIS EMPHASIS ON
DATA OVER AND OVER AGAIN TODAY
AS WE GO THROUGH THE DIFFERENT
RECOMMENDATIONS, SO KEY TO
MAKING PROGRESS WE HAVE GOOD
DATA INFRASTRUCTURE.
SO, THE THIRD STEP TOWARDS THIS
IS TO IDENTIFY DATA SOURCES, AND
DATA GAPS, ESTABLISH A NATIONAL
DATABASE ON SOCIAL, ECONOMIC,
HEALTH-RELATED FACTORS THAT
DRIVE ADRD TREATMENT AND HOW
FACTORS IMPACT HEALTH AND
NON-HEALTH OUTCOMES.
THE CHALLENGE OF DATA IS REALLY
MULTI-FACETED.
NEXT SLIDE.
WHEN WE THINK ABOUT THE DATA
INFRASTRUCTURE, THIS IS
ABSOLUTELY ESSENTIAL THAT WE
CREATE THIS INFRASTRUCTURE AND
INCLUDE MEASURES OF SOCIAL AND
BEHAVIORAL RISK FACTORS.
IF WE DON'T MEASURE IT, WE WON'T
STUDY IT AND LEARN HOW TO MAKE
PROGRESS.
WE NEED A STRONG INFRASTRUCTURE
THAT CAN SUPPORT THAT RESEARCH.
HOWEVER, ANYBODY WHO HAS BEEN IN
THE FIELD TRYING TO DO RESEARCH
UNDERSTANDS NO DATASET IS
PERFECT.
THERE ARE INEVITABLE TRADEOFFS
IN REAL DATA COLLECTION.
AND SO WHEN WE THINK ABOUT THE
GOALS OF CAUSAL INFERENCE,
HAVING STATISTICAL POWER,
EFFICIENT PRECISE ESTIMATES,
HAVING HIGH QUALITY MEASURES
WITH VERY CUTTING EDGE TOOLS,
AND REPRESENTATION AND
GENERALIZABILITY MAKING SURE
EVERYONE CAN BE INCLUDED IN
RESEARCH AND THE RESEARCH IS
RELEVANT TO THEM ALL, DIFFERENT
DATASETS WILL BE ADVANTAGEOUS
FOR THESE DIFFERENT GOALS.
NEXT SLIDE.
FOR EXAMPLE, FOR STATISTICAL
POWER, LARGE VOLUNTEER COHORTS
LIKE "ALL OF US," LARGE RECORDS
LIKE KAISER, MAY BE THE MOST
APPROPRIATE.
HOWEVER, WHEN WE THINK ABOUT TOP
TIER MEASUREMENT QUALITY
CLINIC-BASED STUDIES DEPLOYING
EMERGING AND NEW MODALITIES MAY
BE THE IDEAL SOURCE.
REPRESENTATION AND
GENERALIZABLE, WE'RE NEED TO
THINK ABOUT COHORTS THAT MAKE
SURE THEY INCLUDE COMMUNITIES
SOMETIMES OMITTED FROM RESEARCH
OR NOT REPRESENTED, LIKE HEALTH
AND RETIREMENT STUDY, THE REGARD
STUDY, AND FOR CAUSAL INFERENCE
THERE ARE OTHER PRIORITIES.
THE KEY IS THAT WE DEVELOP TOOLS
TO TRIANGULATE ACROSS THESE DATA
SOURCES, SO WE CAN WEAVE
TOGETHER THE STRENGTH OF EACH
TYPE OF DATA AND LEVERAGE THOSE
TO ADDRESS EACH OF THESE GOALS.
NEXT SLIDE.
MOVING BACK TO THE STEPS TOWARDS
THE OVERALL GOALS IN THE OVERALL
RECOMMENDATION, THE COMMITTEE
WANTED TO EMPHASIZE
PHARMACOLOGIC AND
NON-PHARMACOLOGIC APPROACHES
INCLUDING MEDICAL AND SOCIAL
SERVICE CARE INTERVENTIONS.
AND CONSIDER EFFECTS ON COST AND
HEALTH OUTCOMES, UNDERSTANDING
THERE ARE REAL TRADEOFFS AND SO
WE NEED TO THINK ABOUT COST AND
HEALTH.
WE DON'T THINK WE CAN DO THIS
WITHOUT PAYING ATTENTION TO
SUPPLY SIDE FACTORS, INCLUDING
OWNERSHIP OF PHYSICIAN
PRACTICES, LABOR MARKET
CONDITIONS, IF THERE'S NOBODY IN
THE LABOR MARKET TO PROVIDE CARE
IT'S GOING TO BE VERY HARD TO
DELIVER HIGH-QUALITY CARE.
MEDICARE BENEFIT PLAN, IMPACT,
ACCESS TO CARE AND TREATMENT.
WE WANT TO EMPHASIZE THE ROLE OF
SOCIOCULTURAL, ACCESS TO CARE
FOR BOTH COGNITIVE AND
BEHAVIORAL SYMPTOMS OF DEMENTIA.
AND AN IMPORTANT PIECE OF THIS
WHEN WE THINK ABOUT ACCESS TO
CARE IS ADDRESSING MODALITIES OF
DELIVERY, CARE DELIVERY, RURAL
AMERICA, WHAT ARE THE BEST WAYS
TO MEET THE NEEDS IN RURAL
AMERICA VERSUS OTHER
COMMUNITIES, WE NEED EVALUATE
HOW PEOPLE ARE USING AND WHAT
THEY PREFER WITH RESPECT TO
TELEMEDICINE OR MOBILE HEALTH
CARE AND ESPECIALLY
DISPROPORTIONATELY AFFECTED
POPULATIONS.
NEXT SLIDE.
AND I THINK THAT WRAPS IT UP AND
I CAN HAND OFF FOR THE NEXT TOP
PRIORITY RECOMMENDATION TO MY
COLLEAGUE DR. DIETERS.
TAKE IT AWAY, KACIE.
>> THANK YOU, DR. GLYMOUR.
I'D LIKE TO SAY THANK YOU TO
EVERYONE FOR BEING HERE AND MY
CO-CHAIR.
I HAVING TO DISCLOSE OR
DISCLAIM.
NEXT SLIDE PLEASE.
SO OUR FIRST AND TOP PRIORITY
RECOMMENDATION IS TO ADVANCE
COMMUNITY-DRIVEN ADRD RESEARCH
TO IMPROVE HOW WE SAMPLE AND
RETAIN POPULATIONS THAT ARE
DISPROPORTIONATELY AFFECTED BY
THESE DISEASES.
THIS MEANS A NUMBER OF THINGS
INCLUDING STANDARDIZE AND
RECRUITMENT PRACTICES ACROSS
RESEARCH GROUPS, RESEARCH
PROGRAMS, AND INVESTIGATING
CENTERS WITH A PROVEN TRACK
RECORD IN REACHING UNDERSERVED
COMMUNITIES.
WE NEED ACCOUNTABILITY SYSTEMS
THAT ENSURE WE'RE NOT RECRUITING
PARTICIPANTS BUT MEETING
MEANINGFUL BENCHMARKS.
THAT MEANS FINDING NEW AND
INNOVATIVE WAYS TO REMOVE
PARTICIPATION BARRIERS LIKE
TRANSPORTATION, MISTRUST, SIMPLY
LACK OF TIME.
WE NEED TO ENSURE TRUE
REPRESENTATION TO IMPROVE THE
SCIENCE ITSELF.
NEXT SLIDE PLEASE.
SO WHAT DO WE MEAN BY COMMUNITY
DRIVEN RESEARCH?
WE DEFINE IT AS RESEARCH THAT
INCLUDES THE VOICES OF THOSE
LIVING WITH OR AT RISK,
ESPECIALLY FROM GROUPS
DISPROPORTIONATELY IMPACTED, NOT
JUST PASSIVE PARTICIPANTS BUT
COLLABORATORS WHO SHAPE THE
RESEARCH QUESTIONS, GUIDING
IMPLEMENTATION, HELPING
INTERPRET THE FINDINGS.
WE'RE ESPECIALLY FOCUSED ON
GROUPS THAT EITHER BEAR HIGHER
BURDEN OF DISEASE OR ARE
UNDERREPRESENTED IN RESEARCH
THAT WE DON'T FULLY UNDERSTAND
HOW ADRD AFFECTS THESE GROUPS.
NEXT SLIDE PLEASE.
ONE OF THE CLEAREST MODELS OF
COMMUNITY DRIVEN RESEARCH IS
COMMUNITY BASED PARTICIPATORY
RESEARCH, AN EXAMPLE OF A
FRAMEWORK THAT EMPHASIZES
PARTNERSHIP BETWEEN RESEARCH AND
COMMUNITY MEMBERS AT EVERY STAGE
OF THE PROCESS.
I REALLY LIKE THAT THIS IMAGE
ILLUSTRATES HOW CBPR BRIDGES
SCIENTIFIC INQUIRY WITH
COMMUNITY RELEVANCE, MAKING THE
WORK ETHICAL, FROM THE TIME OF
INFORMING, EDUCATING AND WORKING
WITH THE PUBLIC TO CREATE THIS
IMPACTFUL RESEARCH.
NEXT SLIDE PLEASE.
STILL UNDER RECOMMENDATION 1 A
CRITICAL SHIFT TO FACILITATE
LIFE COURSE-FOCUSED RESEARCH,
LOOKING AT BRAIN HEALTH MUCH
EARLIER ESPECIALLY IN MID-LIFE
WHEN MANY RISK FACTORS BEGIN.
WE PROPOSE LOWERING AGE OF
INCLUSION FOR RESEARCH TO MIDDLE
AGE.
THIS IS AN EXAMPLE OF AN IMAGE
SHOWING DISPARITIES IN YEARS OF
EDUCATION FROM EARLY 1900s TO
1950.
EDUCATION IS A STRONG PREDICTOR
OF BRAIN HEALTH LATER IN LIFE
YET THESE EARLY DIFFERENCES CAN
HAVE LONG-TERM IMPLICATIONS AND
SO THIS GRAPH IS SHOWING US THAT
IF YOU WERE BLACK AND FROM THE
SOUTH YOU HAD LESS YEARS OF
EDUCATION RELATIVE TO WHITE
INDIVIDUALS WHO LIVED IN THE
NORTH.
SO WHEN WE STUDY AD/ADRD,
ESPECIALLY FOR POPULATIONS THAT
FACE SYSTEMIC BARRIERS WE'RE AT
RISK OF MISSING THE FULL
PICTURE.
NEXT SLIDE PLEASE.
TURNING TO BIOMARKERS, ANOTHER
AREA THAT HAS EVOLVED, WE
RECOMMEND EXPANDING BIOMARKER
DISCOVERY IN UNDERDESERVED
GROUPS, WITHOUT THAT WE CANNOT
BE CONFIDENT IN VALIDITY ACROSS
DIVERSE POPULATIONS.
WE ESPECIALLY EMPHASIZE SCALABLE
BIOMARKERS LIKE BLOOD-BASED
TESTS WHICH CAN REDUCE COST AND
COMPLEXITY AND ENABLE BROADER
INCLUSION.
WE MUST ALSO RECOGNIZE THAT
DISEASE PROGRESSION MAY VARY
BASED ON SOCIAL AND VASCULAR
FACTORS, FRAMEWORKS NEED TO
ADAPT TO INCLUDE THIS.
THIS INCLUDES COGNITIVE
ASSESSMENTS.
AND IMAGE HERE OF DR. BRICKMAN
AT COLUMBIA SHOWS PLASMA
BIOMARKERS CAN DIFFER OR BE THE
SAME ACROSS RACIAL AND ETHNIC
GROUPS, UNDERSCORING THE NEED
FOR TAILORED INTERPRETATION.
NEXT SLIDE PLEASE.
HOWEVER, EVEN WHEN WE DO SAMPLE
MORE INCLUSIVELY WE HAVE TO ASK
IS OUR SAMPLE ACTUALLY
REPRESENTATIVE?
AND SO THIS IS FOCUSED ON
SELECTION BIAS.
WE MUST DEVELOP BETTER METHODS
TO MEASURE AND REDUCE SELECTION
BIAS, WHICH IS HOW WE IMPROVE
GENERALIZABILITY OF FINDING AND
ENSURE OUR RESULTS APPLY TO REAL
WORLD, NOT JUST RESEARCH WORLD.
SO THIS IMAGE CAPTURES THIS
CONCEPT, TARGET POPULATION OF
THOSE WITH HIGHER EDUCATION, YET
STUDY SAMPLE IS MORE HIGHLY
EDUCATED -- IS NOT
REPRESENTATIVE OF THOSE THAT ARE
MORE HIGHLY EDUCATED, SORRY,
THOSE EDUCATED AROUND EDUCATION
DIMENSIONS.
SO HOW DOES THIS IMPACT THE
STUDY CONCLUSION ABOUT EFFECT OF
EDUCATION ON ALZHEIMER'S
BIOMARKER?
NEXT SLIDE PLEASE.
FINALLY WE NEED MAP THE FUTURE
OF BRAIN HEALTH WITH EXPANSIVE
VIEW FROM GENES TO MICROBES,
THAT MEANS EXPANDING MULTI-OMICS
RESEARCH, SUCH AS METABOLOMICS,
ESPECIALLY IN POPULATIONS THAT
ARE LEFT OUT.
PRIORITIZING EARLY MARKERS LIKE
THE MICROBIOME COULD ALLOW FOR
EARLIER MORE TAILORED
INTERVENTIONS.
WE ALSO NEED BETTER TOOLS TO
ANALYZE DIVERSE AND LARGE
DATASETS.
AND MORE SUPPORT FOR INTEGRATING
THEM.
THIS IMAGE HERE SHOWS ANCESTRY
REPRESENTATION IN GWAS STUDIES
ILLUSTRATES A STARK IMBALANCE
STILL GOING ON..
THEY ARE WORKING HARD TO CORRECT
THE IMBALANCE WE'VE SEEN NOT
ONLY IN SOCIAL FACTORS AND OUR
RECRUITMENT EFFORTS, BUT ALSO IN
OUR INCLUSION FOR THESE OMICS
RESEARCH.
ONLY BY EMBRACING COMPLEXITY AND
INCLUSION CAN WE CREATE TRULY
TRANSFORMATIVE BRAIN HEALTH
RESEARCH.
IN SUMMARY I WANT TO VOTE FOR
THIS ADVANCE IN ADRD RESEARCH
THAT'S REPRESENTATIVE OF ALL
POPULATIONS AND WE MUST MOVE
FROM INCLUSION AS AFTERTHOUGHT
TO INCLUSION.
CHANGE ARE KEY TO GETTING THERE.
THAT'S IT FOR ME.
NEXT SLIDE.
>> HELLO, EVERYBODY.
MY TURN, I'M EXCITED TO BE HERE.
LIKE MARIA AND KACIE MENTIONED,
IT WAS A PLEASURE TO WORK WITH
EVERYBODY IN THE COMMITTEE TO
WORK ON THESE RECOMMENDATIONS.
SO I'M DR. MIGUEL ARCE-RENTERIA,
COLUMBIA UNIVERSITY, MY WORK
FOCUSES ON HEALTH DISPARITIES IN
LATINOS AND ADVERSE POPULATIONS
AROUND THE WORLD.
AND SO EVERYBODY CAN SEE ME AND
HEAR ME FINE.
NEXT SLIDE.
I'LL BE GOING OVER MY
DISCLAIMERS AND DISCLOSURES,
NOTHING REALLY TO REPORT.
NEXT SLIDE.
AND SO I'LL BE GOING OVER TWO
RECOMMENDATIONS, PRIMARILY
FOCUSING ON RECOMMENDATION 3 ON
ENSURING STRONG WORK FORCE
INVOLVING BIOMEDICAL,
BEHAVIORAL, SOCIAL SCIENCE,
RESEARCH IN HIGHEST RISK
POPULATION, POPULATIONS THAT FOR
HEALTH DISPARITIES, OUR
RECOMMENDATIONS IN TERMS OF WHAT
IS NEEDED FOR HIGH-QUALITY,
HIGH-IMPACT HEALTH DISPARITIES
WORK AS WELL AS COMBINING
OVERLAPPING WITH RECOMMENDATION
7 WITH PRIORITY 4 ON ENHANCING
ACCESS TO RESEARCH TRAINING,
ESPECIALLY FOR INDIVIDUALS WHO
ENCOUNTER EDUCATIONAL BARRIERS
TO ENSURING OUTSTANDING ADRD
WORKFORCE.
IT BLENDS ITSELF EASILY INTO A
COMBINING THE SESSION OF THE TWO
RECOMMENDATIONS TOGETHER, GIVEN
THAT THOSE THAT WOULD BENEFIT
FROM ENHANCED TRAINING LIKE
INDIVIDUALS WHO ENCOUNTER
EDUCATIONAL BEARERS ARE ALSO
THOSE WITHIN THESE AT HIGH-RISK
POPULATIONS, AT RISK FOR HEALTH
DISPARITIES, AS MENTIONED BY MY
COLLEAGUES ON PREVIOUS
PRESENTATIONS, SO I'LL BE GOING
INTO DETAIL FOR TRAINING FOR
EARLY CAREER RESEARCHERS NEW TO
LEARNING ABOUT ADRD RESEARCH,
GRANTS PROPOSED IN TERMS OF
RESEARCHING FOR HEALTH
DISPARITIES WORK, AND AS WELL
THINKING ABOUT MORE PROBLEMATIC
STRUCTURAL CHANGES SUCH AS
PROMOTING MEETINGS, FOR OPEN
DIALOGUE, APPROACH TO ADRD
RESEARCH, AS WELL AS BRINGING IN
THE WORLD OF SCIENTISTS,
BRINGING IN EXTERNAL GROUPS TO
STRENGTHEN SUPPORT FOR
RESEARCHERS IN THIS FIELD.
SO NEXT SLIDE.
GREAT.
AND SO IN TERMS OF BROADLY
SPEAKING, TRAINING FOR EARLY
CAREER SCHOLARS IN ADRD, HEALTH
DISPARITIES WORK, WHY TRAINING
TO ADDRESS DISPARITIES, IT'S A
FUNDAMENTAL RESEARCH SKILL.
ULTIMATELY THE GOAL IS WITH THIS
ADDITIONAL TRAINING IT WILL LEAD
TO REDUCING, UNDOING HEALTH
DISPARITIES WORK, IN TERMS OF
COMBINING INCREASING ACCESS TO
INDIVIDUALS WITH EDUCATIONAL
BARRIERS, THEN ENHANCE TRAINING
IN HEALTH DISPARITIES RESEARCH,
WORK HAS SHOWN TEAMS WITH
MEMBERS THAT INCLUDE MEMBERS
FROM THE GROUP LEADS TO BETTER
SCIENCE, SUCH AS PROVIDING
MEANINGFUL CONTENT ON HEALTH
DISPARITIES PATIENT POPULATION,
BIOMEDICAL PROBLEMS, PUBLISH
MORE FREQUENTLY, CITED MORE,
INCREASES UNDERSTANDING AND
COMMITMENT TO HEALTH DISPARITIES
WORK.
AND AS WELL AS ENCOURAGES THEM
TO PUBLISH MORE, SECURE GRANTS,
INDICATING A POSITIVE TRAJECTORY
TOWARD INDEPENDENT GRANT
FUNDING.
ALL RIGHT.
I JUST WANTED TO HIGHLIGHT ON
THE RIGHT, IT'S IMPORTANT TO
PROVIDE THIS EARLY TRAINING FOR
CAREER SCHOLARS IN HEALTH
DISPARITIES BROADLY SPEAKING, IN
PARTICULAR INDIVIDUALS FROM
HEALTH DISPARITIES DISPARITIES,
MIGHT ENCOUNTER EDUCATIONAL
DIFFICULTS, THESE INDIVIDUALS
MIGHT PROVIDE INSIGHTS TO
BENEFIT COMMUNITIES WE'RE
INTERESTED IN WORKING WITH.
ON THE RIGHT I WANTED TO
HIGHLIGHT SOME PROGRAMS THAT
HAVE EXISTED THAT WE CAN USE
THIS TYPE OF FRAMEWORK THAT
PROMOTE EARLY CAREER TRAINING
BROADLY SPEAKING FOR INDIVIDUALS
WITH DIFFICULTIES TO PROVIDE
OPPORTUNITIES TO ENTER THE
RESEARCH FIELD, AS WELL AS
FOCUSING ON HEALTH DISPARITIES
WORK ACROSS THE CAREER TIMELINE.
FOR INSTANCE, AT THE TOP WE HAVE
SUMMER RESEARCH PROGRAMS FUNDED
BY THE NIH, SUCH AS THE ONE AT
COLUMBIA UNIVERSITY ON THE
SUMMER TRANSLATIONAL AGING
RESEARCH FOR UNDERGRADUATES, A
WONDERFUL SUMMER PROGRAM.
TRAINING PROGRAMS ALL OVER THE
COUNTRY, HIGHLIGHTING JUST ONE
FROM SAN DIEGO STATE, FOCUSING
ON ADVANCING DIVERSITY,
HIGHLIGHTING SAN DIEGO STATE, I
GRADUATED, SO I'M BIASED, I'VE
WORKED WITH INDIVIDUALS FROM
THAT PROGRAM, SUMMER PROGRAM AT
COLUMBIA, WONDERFUL TRAINEES,
AND THERE'S THAT LEVEL OF
POSTDOCTORAL CONTINUING
TRAININGS THAT HAVE BEEN A LOT
OF TYPES OF OPPORTUNITIES THAT
PROVIDE SUPPORT FOR INDIVIDUALS,
SUCH AS RECENTLY THERE'S NOTICES
EXPIRED ONLINE BUT HISTORICALLY
WE HAD SUPPLEMENTS TO PROMOTE
DIVERSITY AND HEALTH-RELATED
RESEARCH WITH HEAVY TRAINING
ELEMENTS FOR THESE INDIVIDUALS
AS WELL AS OUTSIDE OF THE NIA,
FELLOWSHIPS TO PROMOTE
DIVERSITY, PHO -- AS WELL AS
OTHER PROGRAMS FOR EARLY CAREER
NOT JUST POSTDOCS BUT FACULTY
SUCH AS WITH THE RCMARs.
AS A PERSONAL NOTE THESE
PROGRAMS ARE BENEFICIAL FOR
ENCOURAGING INDIVIDUALS WHO
DON'T HAVE USUAL ACCESS FOR
EDUCATIONAL OPPORTUNITIES AND
GET THEM ENGAGED IN RESEARCH
BECAUSE I'VE BENEFITED FROM EACH
OF THESE TYPES OF PROGRAMS, WHEN
I WAS AN UNDERGRAD AT SAN DIEGO
STATE, IN AN NIH PROGRAM FOR
GETTING EXPOSED TO RESEARCH, I
DID A SUMMER RESEARCH PROGRAM AT
BOSTON UNIVERSITY FUNDED THROUGH
THE NIH.
THEN AS A GRADUATE STUDENT I
RECEIVED A RESEARCH FELLOWSHIP
PROGRAM ON THESE TOPICS, AS A
POSTDOC AWARDED A DIVERSITY
SUPPLEMENT, ALZHEIMER'S
ASSOCIATION FELLOWSHIP AND
FUNDING THROUGH RCMAR, NOW MY
THIRD YEAR OF FACULTY TWO
R01s, WRAPPING UP A K99/R00.
I CAN'T STRESS ENOUGH HOW
INFLUENTIAL THESE TRAINING
OPPORTUNITIES HAVE BEEN FOR MY
CAREER IN TERMS OF WORKING INTO
HEALTH DISPARITIES WORK, WHICH I
THINK WE NEED TO CONTINUE
SUPPORTING THESE PROGRAMS IF WE
WANT TO HELP CHANGE THE FIELD OF
HEALTH DISPARITIES.
NEXT SLIDE.
ANOTHER RECOMMENDATION FOR US IS
INCLUSION, ENCOURAGE GRANTS TO
HAVE EXPERIENCED HEALTH
DISPARITIES EXPERT AS
NON-TRIVIAL COMPONENT AND
EMBRACE CLEAR TIME TO ASSESS HOW
PROPOSED RESEARCH WILL IMPACT
POPULATIONS.
THE IDEA BEHIND IT, INCLUSION OF
INVESTIGATORS WITHOUT PRIOR
EXPERIENCE OR COMMITMENT TO
HEALTH DISPARITIES RESEARCH
ATTEMPTING TO DO HEALTH
DISPARITIES RESEARCH HAS BEEN
SHOWN HAVE NEGATIVE CONSEQUENCES
SUCH AS STUDIES CAN
MISCHARACTERIZE ROOT CAUSES,
CREATE UNCLEAR POTENTIAL
SOLUTIONS FOR IMPORTANT ISSUES,
MEMBERS OF THE HEALTH
DISPARITIES SPACE AT RISK OF
BEING OUTNUMBERED.
AS WAS MENTIONED, IF WE CAN
REDUCE THE RISK FOR EVERYBODY TO
MATCH THE ONE WITH THE LOWEST
RISK IT BENEFITS EVERYBODY IN
THE POPULATION.
SO, ULTIMATELY AS WELL, IF WE DO
NOT INCLUDE HEALTH DISPARITIES,
CAN REDUCE COMMUNITIES ENGAGING
IN SCIENTIFIC EFFORT, WE SUGGEST
FOR GRANTS FOCUSED ON HEALTH
DISPARITIES THEY HAVE TO HAVE A
STRONG HEALTH DISPARITIES EXPERT
IN THE FIELD.
>> THREE MINUTES.
>> NEXT SLIDE PLEASE.
IN ADDITION WE WOULD BENEFIT
FROM ADDITIONAL PROMOTING ANNUAL
OR REGULAR MEETINGS TO DISCUSS
DISAGREEMENTS, AREAS OF
CONSENSUS, GUIDELINES ON BEST
PRACTICES FOR AD/ADRD HEALTH
DISPARITIES RESEARCH, DIALOGUE
FOR APPROACHES TO ADDRESS
POPULATIONS IN AD/ADRD.
THE GOAL IS THESE MEETINGS AND
SUMMITS CAN SUPPORT RESEARCH
COMMUNITIES INTRODUCING
FRAMEWORKS OF SCIENCE PRACTICE
AND POLICY TO SHAPE FUTURE
RESEARCH SUCH AS SUMMIT WE'RE
ATTENDING TODAY, PROVIDE
RECOMMENDATIONS THAT BRIDGE
SCIENCE PRACTICE AND POLICY
TOGETHER, OFFER COMMUNITY
ENGAGED STRATEGIES TO ENHANCE
RECRUIT, EVERYBODY CAN HELP GROW
FROM EACH OTHER AND LEARN FROM
EACH OTHER.
FACILITATE AND PROVIDE AREAS OF
CONSENSUS AND GUIDELINES FOR
BEST PRACTICES AND LEAD TO OPEN
DISCUSSIONS.
I'M HIGHLIGHTING ON THE RIGHT
THAT THERE HAVE BEEN SOME
MEETINGS THAT HAPPENED REGULARLY
OR ONE TIME, WHICH HAVE BEEN
WONDERFUL.
I THINK IT WOULD BE HELPFUL TO
ESTABLISH SOMETHING MORE OF A
REGULAR MEETING THAT CAN THEN
REALLY WE CAN ALL BE ON TOP OF
EVERYTHING THAT'S HAPPENING WITH
HEALTH DISPARITIES WORK, AND HOW
TO CONTINUE IMPROVING THE WORK
FORCE IN IMPROVING SCIENTISTS
ENGAGING IN THIS RESEARCH TO
OBVIOUSLY ULTIMATELY REDUCE
HEALTH DISPARITIES.
AND NEXT SLIDE.
ADDITIONAL TRAINING GOALS WE
HAVE, TO PROMOTE ONGOING
TRAINING AND PROFESSIONAL
DEVELOPMENT FOR RESEARCH STAFF,
INCREASING AS WELL AS TRAINING
ON PRACTICES FOR COMMUNITY
ENGAGED RESEARCH THAT HELPS
BUILDING COMMUNITY TRUST THROUGH
HANDS-ON OUTREACH AND EDUCATION,
I'M SHOWING HIGHLIGHT OF THE
WORK THAT MY TEAM AND MYSELF
HAVE DONE.
THIS PROVIDES OPPORTUNITIES FOR
CLINICIANS FOR FIELD EXPERTS TO
SHARE INSIGHTS, CREATE DIALOGUE,
START BUILDING TRUST, IN
ADDITION PROVIDING ANOTHER
OPPORTUNITY FOR EARLY CAREER
TRAINEES, TO ENGAGE IN
CULTURALLY RESPONSE TOOLS TO
ENGAGE AND DEVELOP PROFESSIONAL
WORKING WITH THE COMMUNITY AND
THERE'S BEEN SEVERAL WORK TO
SUPPORT BENEFITS OF COMMUNITY
ENGAGED RESEARCH THAT WILL
INCREASE RETENTION, RECRUITMENT
AND RETENTION OF THESE
INDIVIDUALS IN THESE STUDIES SO
MAKING ADRD RESEARCH MUCH MORE
GENERALIZABLE.
NEXT SLIDE.
AND THEN LASTLY, WE'RE ALSO
SUGGESTING THAT WE CONVENE AN
EXTERNAL WORKING GROUP WITH
PUBLIC STAKEHOLDERS MEANING
INDIVIDUALS FROM GROUPS THAT ARE
MOST IMPACTED FROM ADRD,
CAREGIVERS, INDIVIDUALS
THEMSELVES WITH ADRD, AFFECTED
BY ADRD TO SUPPORT
INFRASTRUCTURE.
THE GOAL IS LEVERAGING A WORKING
GROUP OF PUBLIC STAKEHOLDERS,
NOT NECESSARILY RELYING ON
KNOWLEDGE, HERE I'M THINKING
ABOUT THERE'S EFFORTS FROM
SEVERAL INVESTIGATORS, DIFFERENT
TYPES OF PROGRAMS, WHERE THEY
HAVE COMMUNITY BOARDS, THOSE
TYPES OF THINGS, THAT HAVE THAT
GOAL IN MIND WHERE ENGAGING WITH
STAKEHOLDERS CAN SUPPORT
COMMUNITY RESEARCH INITIATIVES
IN MUST BE WAYS SUCH AS HELPING
DEVELOP RESEARCH THAT'S
RESPONSIVE TO NEEDS OF THE
COMMUNITIES THEY SERVE, PROMOTE
AND FACILITATE ENGAGEMENT WITH
COMMUNITY MEMBERS, HELP DESIGN
RESEARCH PROJECTS, HELP WITH
COLLECTION OF DATA, INTERPRETING
DATA AS WELL, AND STAKEHOLDER
COLLABORATIONS, SHIFTS, DYNAMICS
OF EXPERTS, ACKNOWLEDGING THE
VALUE AND LIVED EXPERIENCES
VERSUS JUST FROM DIRECT FIELD
TRAINING AND INCREASING SOCIAL
AND CULTURAL RELEVANCE OF
RESEARCH TO PROMOTE CHANGE IN
LOCAL PRACTICES AND POLICY,
ANOTHER CRITICAL COMPONENT OR
RECOMMENDATION FOR WORKFORCE
THAT WE NEED TO BRING INTO OUR
WORKFORCE WITHIN THOSE OF US
WITH OUR GOAL FOR HEALTH
DISPARITIES WORK TO PARTNER WITH
COMMUNITIES OUTSIDE OF WHAT
WE'RE USED TO IN THE SCIENTIFIC
FIELD BRINGING IN OTHER
STAKEHOLDERS.
AND I BELIEVE THAT'S IT.
NEXT SLIDE.
I THINK THAT'S IT.
THANK YOU ALL VERY MUCH.
>> HELLO, THANKS, APPRECIATE
THOSE COMMENTS.
HAVE AN AMAZING OPPORTUNITY WITH
THIS GROUP, DISCUSSING
RECOMMENDATIONS LED BY DR.
GLYMOUR AND DR. DIETERS.
THANK YOU FOR YOUR LEADERSHIP.
I'LL SPEND A FEW MINUTES
DISCUSSING ASSESSMENT,
TREATMENT, AND CARE, AND HOW --
SOME RECOMMENDATIONS IN THESE
AREAS THAT CAN LEAD TO RESEARCH
TO IMPROVE OUTCOMES FOR
REPRESENTATIVE POPULATIONS AT
RISK AND LIVING WITH ADRD.
NEXT SLIDE PLEASE.
NOTHING TO DISCLOSE AND
DISCLAIM.
A KEY RECOMMENDATION, ROAM DAYS
4, SOCIAL ASSESS SOCIAL,
ECONOMIC, STRUCTURAL IMPEDIMENTS
TO ACCESS TO AD/ADRD ASSESSMENT,
DIAGNOSIS, AND REFERRALS, CARE,
IMPACTS ON HEALTH AND ECONOMIC
OUTCOMES, SO MY WORK WITH THE
ALZHEIMER'S ASSOCIATION WHERE I
LEAD DIVERSITY, EQUITY,
INCLUSION THINKING STRATEGICALLY
LEADING TO ACCESS, OUTCOMES, ALL
TYPES OF THINGS THAT CAN REALLY
ACT AS IMPEDIMENTS TO RECEIVING
QUALITY CARE.
SPECIFIC DISCUSSIONS, SPECIFIC
RECOMMENDATIONS TO DEVELOP A
TOOLBOX OF TAILORED INFORMATION
FOR PARENTS -- PATIENTS, TO BE
AFFECTED BY VARIABLES,
EDUCATION, GEOGRAPHY, INCOME,
RACIAL AND/OR ETHNIC IDENTITY.
INFORMATION HERE WOULD INCLUDE
VALIDITY OF TYPICAL DIAGNOSTIC
TOOLS AND EVIDENCE ON MEDICATION
EFFICACY, MAYBE EVEN SAFETY
ACROSS GROUPS.
WE ALSO TALKED ABOUT EXPANDING
RESEARCH INTO KNOWN AND EMERGING
SOCIOCULTURAL, BEHAVIORAL,
PHYSICAL, BUILT ENVIRONMENTAL
FACTORS.
AND FACTORS RELATED TO ECONOMIC
AND HEALTHCARE SYSTEMS ACROSS
ALL LEVELS FROM THE COMMUNITY,
VERY IMPORTANT COMMUNITY FACTORS
THAT DR. DETERS MENTION TO
SOCIETAL FACTORS THAT IMPEDE
ASSESSMENT, DETECTION,
DIAGNOSIS, REFERRALS, BARRIERS
TO ASSESSMENT AND DIAGNOSIS.
REALLY, YOU KNOW, SPENT A LOT OF
TIME TALKING ABOUT STIGMA AND
HOW TO ADDRESS STIGMA THROUGHOUT
THESE PATHWAYS OF ACCESS TO
CARE.
AND THEN THIRD, NEW RESEARCH.
YOU KNOW, MORE SUPPORT AND
TRAINING LIKE DR. RENTERIA
MENTIONED, FUNDING FOR NEW
RESEARCH ON EFFECTS OF
ASSESSMENT, DETECTION,
DIAGNOSIS, REFERRALS ON HEALTH,
SOCIAL AND ECONOMIC OUTCOMES,
AND THIS DIAGRAM REALLY PROVIDES
A VISUAL OF HOW DIVERSE NEEDS
ACROSS COMMUNITIES, ACROSS
POPULATIONS, THEY ARE ALL
CONTEXTUALIZED BY ACCESS TO
EDUCATION, HEALTH CARE, AND
QUALITY, NEIGHBORHOOD FACTORS,
COMMUNITY CONTEXT, AND OF COURSE
ECONOMIC STABILITY.
SO REALLY THINKING ABOUT A RANGE
OF FACTORS THAT MAY BE ACROSS A
NUMBER OF LEVELS OF ANALYSIS
THAT ARE IMPORTANT FOR GETTING
PEOPLE THE CARE AND TREATMENT
THEY NEED IN WAYS THAT CAN BE
EFFECTIVE, WHICH IS THE POINT
HERE.
NEXT SLIDE.
HERE'S A FRAMEWORK THAT I WAS A
PART OF, HELPED TO DEVELOP,
WHILE AT THE NATIONAL INSTITUTE
ON AGING.
AND MAYBE A CONSIDERATION OF
THIS TYPE OF FRAMEWORK, THIS
FRAMEWORK SPECIFICALLY, OR
EXTENDING THIS FRAMEWORK TO 2.0
GIVEN WHAT WE'VE KNOWN, HOW IT'S
BEEN USED SINCE 2015.
BUT THINKING ABOUT LEVELS OF
ANALYSIS THAT I JUST MENTIONED,
YOU KNOW, THAT ARE
ENVIRONMENTAL, SOCIOCULTURAL,
BEHAVIORAL, BIOLOGICAL, SPECIFIC
DETERMINANTS OF FACTORS WITHIN
THOSE LEVELS.
AND REAL INNOVATION HERE AS IT
PERTAINS TO THIS DISCUSSION IS
PATHWAYS.
WE KNOW THERE ARE BIOLOGICAL AND
GENETIC FACTORS, HOW DOES THAT
RELATE TO BEHAVIOR, HOW IS
BEHAVIOR SHAPED BY SOCIOCULTURAL
NORMS AND BELIEFS, SOCIAL
FACTORS LIKE INSTITUTIONAL
RACISM, HEALTH-SEEKING
BEHAVIORS, SHAPING THAT WAY,
THEN HOW THE ENVIRONMENT
PROVIDES A CONTEXT FOR THAT
PATH.
SO THAT PATHWAY THROUGH THESE
LEVELS OF ANALYSIS, KNOWING ALL
OF THESE FACTORS PLAY A ROLE,
AND CONSIDERING THE BEST WAYS TO
INTERVENE SO THAT PEOPLE CAN
HAVE ACCESS TO QUALITY CARE AND
TREATMENT, WAYS THAT ARE
EFFECTIVE, AND UNDERSTANDING
CONTEXT.
NEXT SLIDE.
SO, TO SUMMARIZE, AGAIN, OUR
RECOMMENDATION 4 WAS TO ASSESS
THE SOCIAL, ECONOMIC, AND
STRUCTURAL IMPEDIMENTS TO
ACCESS, TO AD/ADRD ASSESSMENT,
DIAGNOSIS, REFERRALS, CARE,
IMPACTS ON HEALTH AND ECONOMIC
OUTCOMES AND TO TARGET 2031 BUT
REALLY UNDERSTANDING THAT THAT'S
A LONG PROCESS TO UNDERSTAND THE
MULTI-LEVEL DETERMINANTS OF
LIKELIHOOD, QUALITY OF VALIDITY
OF ASSESSMENT AND DIAGNOSIS,
ESPECIALLY IN THOSE POPULATIONS
THAT ARE UNDERRESOURCED, AND
DISPROPORTIONATELY AFFECTED BY
AD/ADRD.
TO EVALUATE ACCESS TO SOURCES OF
SUPPORT AND CARE TO OPTIMIZE
QUALITY OF LIFE AFTER THE
DIAGNOSIS.
SO MANY SOCIOCULTURAL FACTORS,
YOU KNOW, PLAY A ROLE, CRITICAL
ROLE, IN ACCESS TO SOURCES OF
SUPPORT AND CARE.
YOU KNOW, TRUST, STIGMA, ALL THE
THINGS THAT CAN SERVE AS
BARRIERS WE WANT TO REALLY
UNDERSTAND AND WRAP UP THE
TRUST, IN COMMUNITY-DRIVEN
COMMUNITY-BASED PARTICIPATORY
RESEARCH LIKE DR. DETERS
MENTIONED.
THE HEART OF THAT BEING IN
COMMUNITY AND ASSESSING IT AND
ELEVATING TRUST SO THAT PEOPLE
CAN ACCESS IN WAYS THAT AGAIN
ARE EFFECTIVE.
NEXT SLIDE.
AND I WILL TURN IT OVER TO DR.
TURNEY.
GOOD TO BE WITH YOU TODAY.
>> THANKS, DR. HILL.
ALL RIGHT.
THANKS FOR STICKING IT OUT FOR
DAY 3.
I KNOW IT MEANS A LOT TO PAUSE
AND COME BACK, BUT THANKS FOR
SHOWING UP.
WE'LL START WITH THE NEXT SLIDE.
NO DISCLAIMERS.
NEXT SLIDE PLEASE.
ALL RIGHT.
SO, THIS RECOMMENDATION,
RECOMMENDATION 6, PRIORITY 3, TO
IDENTIFY LIFE COURSE AND
MULTI-LEVEL MECHANISMS AND
PATHWAYS TO A.D. AND A.D. R D
AND USE DISCOVERED TO REDUCE
DISPARITIES WHICH IS A REALLY
NICE SEGUE FROM DR. HILL.
I'VE DEDICATED MY WORK TO
UNDERSTAND HOW STRESS,
ENVIRONMENT, SOCIAL CONTEXT,
BIOLOGICALLY EMBEDDED OVER THE
LIFE COURSE AND FEEL LIKE THAT'S
IMPORTANT IN THE DIRECTION THAT
WE'RE GOING WITH THIS FIELD TO
SEE HOW PRACTICES SHAPE BRAIN
HEALTH AND A.D. AND ADRD RISK,
WHY SOME POPULATIONS ARE MORE
LIKELY EXPERIENCING EARLIER
AGING OR MORE SEVERE, LESS
TREATED FORMS OF DEMENTIA, OR
EVEN BETTER UNDERSTAND HOW SOME
PEOPLE ARE STILL RESISTANT OR
RESILIENT OR LESS SUSCEPTIBLE.
THIS RECOMMENDATION URGES US TO
MOVE UPSTREAM SO YOU CAN SEE
LIKE BEFORE THE SYMPTOMS EMERGE,
WE KNOW SOME THINGS HAPPEN 20
YEARS BEFORE WE SEE BRAIN
CHANGES, AMYLOID OR WHATEVER YOU
USE AS YOUR OUTCOME VARIABLE BUT
REALLY TO UNDERSTAND WHEN AND
HOW THESE RISK FACTORS BUILD UP
ACROSS THE LIFE COURSE.
AND SO WE MUST ASK WHERE DO
THESE RISKS BEGIN, WHO BEARS THE
BURDEN, AND TRY TO SEE HOW CAN
WE INTERVENE BEFORE THE DECLINE
ACTUALLY BEGINS.
NEXT SLIDE PLEASE.
ANOTHER CONCEPT TO HIGHLIGHT WAS
REALLY TOO OFTEN WE JUMP INTO
THE MEASUREMENT SIDE WITHOUT
UNDERSTANDING THE SYSTEMS THAT
WE'RE TRYING TO UNDERSTAND HERE.
AND THIS RECOMMENDATION CALLS
FOR CLEAR CONCEPTUAL MOD MODELT
ROOT OUT ROOT CAUSES, PATTERNED
AND PREDICTABLE.
WE MUST MAP OUT SOCIAL,
STRUCTURAL, BIOLOGICAL FACTORS
DRIVING OUTCOMES, INCLUDING
THINGS LIKE EARLY LIFE
EXPOSURES, PSYCHOSOCIAL TRAUMA,
ACCESS TO CARE, AND QUITE A FEW
OTHERS.
SO THESE MODELS GUIDE OUR DESIGN
FROM THE BEGINNING, HYPOTHESES,
ANALYSES, HOW WE ANALYZE DATA,
WE MENTIONED OVER AND OVER SO
FAR, AND DO THIS FROM THE
BEGINNING AND SHOULD LET THAT BE
THE RULE.
NEXT SLIDE PLEASE.
>> TWO MINUTES LEFT.
>> OKAY.
WE MUST MEASURE LIKE DR. HILL
SAID BROADEN WHAT WE MEASURE AND
FOR WHOM.
THIS INCLUDES POLICY LEVEL
FACTORS, LIKE EDUCATION,
ENVIRONMENTAL TOXINS,
NEIGHBORHOOD SAFETY, AND AS
WE'VE MENTIONED OVER AND OVER A
LOT ARE MODIFIABLE, 45% AT LEAST
ARE MODIFIABLE FACTORS,
INCLUDING CLINICAL MODIFIABLE
FACTORS, BEHAVIORAL RISK
FACTORS, EVEN MORE CRITICALLY
STARTING EARLIER WITH SOME EARLY
LIFE EXPERIENCES.
AND SO I DO BELIEVE THAT WE'RE
TRYING TO EMPHASIZE WE MUST
MEASURE NOT ONLY WHAT HAPPENS TO
PEOPLE BUT WHEN, WHERE, UNDER
WHAT CONDITIONS, ALL THESE
THINGS GIVE UNIQUE PERSPECTIVE
IF WE'RE LEADING TO PRECISION
MEDICINE.
SO THIS MEANS CAPTURING OUTCOMES
BEYOND TYPICAL COGNITION OR
AMYLOID TAU BUT GETTING
BEHAVIORAL, FUNCTIONAL CHANGES,
DOING THIS ACROSS DIFFERENT
POPULATIONS THAT ACTUALLY
REPRESENT THE PEOPLE AND
COMMUNITIES THAT ARE AFFECTED.
NEXT SLIDE PLEASE.
AND WHEN WE THINK OF THESE RISK
FACTORS, I WANT TO EMPHASIZE
THIS IS NOT JUST ONE RISK
FACTOR.
YOU CAN SEE IT'S MULTIPLE,
LAYERED EXPOSURES THAT INTERACT
OVER TIME.
SO WE FEEL LIKE IF WE FAIL TO
EVALUATE SOME INTERACTIONS OR
INTERSECTIONS YOU'LL MISS THE
OPPORTUNITY TO IDENTIFY WHERE
THE PREVENTIONS CAN BE IMPACTFUL
AND SO THE PSYCHOSOCIAL STRESS,
ENVIRONMENTAL TOXINS, STRUCTURAL
BARRIERS, THEY DON'T JUST
COEXIST BUT OFTEN SOMETIMES
AMPLIFY EACH OTHER.
THIS RECOMMENDATION CHALLENGES
US TO DESIGN THE STUDIES AND
ANALYSIS THAT REFLECT HOW PEOPLE
ACTUALLY LIVE.
NEXT SLIDE PLEASE.
AND WRAPPING UP HERE,
EMPHASIZING USE OF METHODS BUT
TO STUDY LIFE COURSE AND
MULTI-LEVEL PATHWAYS WE NEED THE
RIGHT DATA SO THAT STARTS WITH
STARTING AND LINKING EXISTING
COHORT DATA, WE HAVE AMAZING
COHORTS WITH BEAUTIFUL DATA,
LET'S LINK THEM, FIGURE OUT
WHICH COHORTS ARE MISSING WHAT,
COME TOGETHER, EXPAND TO REFLECT
ACTUAL TRUE POPULATION AND
COMMUNITIES AFFECTED.
HARMONIZING THE DATASETS TO
INCREASE POWER ESPECIALLY FOR
UNDERREPRESENTED POPULATIONS,
DEEPER DIVE INTO THE DATA, GET
DATA ABOUT LIFESTYLE, LIVED
EXPERIENCE, OMICS, BIOMARKERS,
AND I THINK IS ESSENTIAL FOR
WHAT WE WANT TO UNDERSTAND AND
ACT ON THESE DISPARITIES.
MY LAST SLIDE, I THINK.
OH, OKAY.
WE ALSO NEED TO POWER UP THE
METHODS, USE METHODS
APPROPRIATE, STUDY RIGHT METHODS
FOR GENE-ENVIRONMENT
INTERACTION, CAUSAL EFFECTS,
TRANSLATING.
WE DON'T HAVE LIMITATIONS, THESE
HAVE A LOT OF DATA, WE SHOULD
ALSO DEVELOP METHODS TO ANSWER
THE QUESTIONS THAT WE HAVE
BECAUSE WITHOUT THESE WE RISK
DRAWING CONCLUSIONS THAT DON'T
APPLY TO EVERY GROUP.
THEY ARE THE ONES THAT ARE MOST
AFFECTED BY AD/ADRD.
WHY ARE WE DOING OUR SCIENCE IF
IT'S NOT GOING TO INCLUDE PEOPLE
MOST AFFECTED?
AND LAST SLIDE.
NEXT SLIDE PLEASE.
AND SO LASTLY FOR ME JUST A CALL
TO ACTION TO RETHINK PREVENTION,
REMINDS US THAT PREVENTION IS
NOT ABOUT TIMING, IT'S ACCESS,
INCLUSION, TAKING ACTION, SO
RESULTS SHOULD BE TANGIBLE
ACTIONS.
IF WE DON'T HAVE THE RIGHT DATA,
THE RIGHT PEOPLE, THE RESULTS
ARE -- SCIENCE IS NOT MUTUAL
IF YOU WANT TO REDUCE
DISPARITIES RESEARCH MUST BE
DESIGNED WITH EQUITY IN MIND
FROM WHO WE STUDY, QUESTIONS WE
ANSWER, QUESTIONS WE ASK, THE
WAY WE MEASURE CERTAIN
CONSTRUCTS, HOW WE APPLY
FINDINGS.
I ENCOURAGE US TO MOVE FROM
DISCOVERY TO COMMUNITY-DRIVEN
PREVENTION STRATEGIES THAT ARE
INFORMED BY REAL DRIVERS OF THE
DISEASE BY ACTUALLY MAKING BOLD
EQUITY-INFORMED PREVENTION AND
AS A STANDARD AND NOT, YOU KNOW,
THE EXCEPTION ONLY A FEW PEOPLE
ARE DOING IT.
I LOOK FORWARD TO SEEING HOW WE
TACKLE THAT.
THANK YOU.
>> I'M PLEASED TO PRESENT OUR
FINAL RECOMMENDATION, MONITORING
PROGRESS.
NEXT SLIDE.
I HAVE NOTHING TO DISCLAIM OR
DISCLOSE.
NEXT SLIDE PLEASE.
THIS RECOMMENDATION IS TO
MONITOR PROGRESS IN ALZHEIMER'S
DISEASE RELATED DEMENTIAS AND IN
DISPARITIES WITH RESPECT TO
PREVALENCE, INCIDENCE,
DIAGNOSIS, TREATMENT AND CARE BY
APPLYING EXISTING METHODS AS
WELL AS INNOVATING AND NOVEL
SURVEILLANCE METHODS.
I KNOW SURVEILLANCE DOESN'T
SOUND LIKE THE MOST EXCITING
AREA BUT HOPEFULLY I CAN MAKE
THE CASE THIS IS KEY FOR
UNDERSTANDING THE EXTENT TO
WHICH THERE ARE DISPARITIES
BECAUSE WE CAN'T ELIMINATE
DISPARITIES IF WE DON'T KNOW TO
WHAT EXTENT THEY EXIST AND WE
ALSO NEED TO TRACK THEM OVER
TIME TO UNDERSTAND WHETHER WE'RE
MAKING PROGRESS OR EVEN
POTENTIALLY LOSING GROUND.
OUR RECOMMENDATION IS TO
PERIODICALLY FIELD NATIONALLY
REPRESENTATIVE SAMPLES, HIGH
QUALITY COGNITIVE
CHARACTERIZATION AND
OVERREPRESENTATION OF
DISPROPORTIONATELY AFFECTED
POPULATIONS TO MONITOR TRENDS IN
DISPARITIES OVER TIME.
SO, POTENTIALLY EMBED THIS,
THESE SAMPLES, WITHIN ONGOING
REPRESENTATIVE COHORTS.
AND WHAT I WANT TO DRAW YOUR
ATTENTION TO IS THIS POINT WE
NEED TO OVERREPRESENT
DISPROPORTIONATELY AFFECTED
POPULATIONS BECAUSE IF WE DON'T
CONSCIOUSLY DO THIS, MANY OF
THESE POPULATIONS WILL BE
REPRESENTED IN NUMBERS JUST TOO
SMALL TO FACILITATE PRECISE
ESTIMATES WHICH MEANS
ESSENTIALLY WON'T BE
REPRESENTED.
TO HAVE TRUE REPRESENTATION OF
MANY DISPROPORTIONATELY AFFECTED
GROUPS IN OUR SCIENCE WE NEED TO
OVERSAMPLE THOSE GROUPS TO HAVE
THEM BE FULLY REPRESENTED.
FOR EXAMPLE, ASIAN AMERICANS
REPRESENT ABOUT 5% OF THE OLDER
ADULT POPULATION IN THE UNITED
STATES, SO PROBABLY NEED MORE
THAN 5% OF OUR SAMPLE FOR THEM
TO BE REPRESENTED IN OUR
ESTIMATES OF THE PREVALENCE AND
INCIDENCE OF ALZHEIMER'S DISEASE
AND RELATED DEMENTIAS.
WE NEED TO INNOVATE AND
POTENTIALLY BORROW METHODS FROM
OTHER FIELDS TO TRY AND CAPTURE
OR TRY TO ESTIMATE POPULATION
AND SUBPOPULATION ESTIMATES OF
THESE RARE DEMENTIAS THAT ARE
NOT GOING TO BE REPRESENTED IN
THESE NATIONAL REPRESENTATIVE
SAMPLES SO WE MIGHT THINK ABOUT
METHODS LIKE MULTI-SYSTEM
ESTIMATION, WHICH IS DEVELOPED
IN THE FIELD OF ECOLOGY FOR
POPULATION ESTIMATES.
NEXT SLIDE PLEASE.
SO WHEN WE THINK ABOUT
ESTIMATING POPULATION AND
SUBPOPULATION ESTIMATES FOR
ALZHEIMER'S DISEASE AND RELATED
DEMENTIAS WE NEED TO THINK ABOUT
CAREFUL PLANNING, IN TERMS OF
WHEN WE'RE DESIGNING THE SAMPLE
AND HOW WE PROCESS THE DATA ONCE
WE HAVE IT.
>> TWO MINUTES.
>> THANK YOU.
THE VERY FIRST STEP IS CLEARLY
DEFINING TARGET POPULATION OR
TARGET POPULATIONS THAT WE WANT
TO CAPTURE SO OVERALL
POPULATION, U.S. POPULATION OF
OLDER ADULTS, SUBPOPULATIONS WE
WANT TO CAPTURE.
SO OUR SAMPLE REPRESENTS THE
TARGET POPULATION TO THE EXTENT
WE CAN POSSIBLY CAPTURE THAT.
AND WE WANT TO MEASURE
CHARACTERISTICS OF THE STUDY
SAMPLE SO WE CAN COMPARE
SYSTEMATICALLY HOW THE SAMPLE
DIFFERS FROM TARGET POPULATION
AND APPLY STATISTICAL METHODS TO
EXTEND FROM STUDY SAMPLE TO
TARGET POPULATION WE WANT TO
ESTIMATE THE PREVALENCE AND
INCIDENCE.
NEXT SLIDE PLEASE.
SO HERE IS NICE WORK BY DR.
LARSON AT UNIVERSITY OF SOUTHERN
CALIFORNIA, WHERE SHE ESTIMATED
PREVALENCE OF COGNITIVE
IMPAIRMENT IN THE U.S., OR
CALIFORNIA POPULATION OF OLDER
ADULTS USING DATA FROM THE
KAISER HEALTHY AGING AND DIVERSE
LIFE EXPERIENCES STUDY.
YOU SEE IN GRAY ESTIMATES, AND
IN BLUE AFTER DR. LARSON APPLIED
WEIGHT TO EXTEND THE ESTIMATES
TO THE CALIFORNIA POPULATION OF
OLDER ADULTS.
NEXT SLIDE PLEASE.
SO, IN CLOSING HEALTH
DISPARITIES ARE PERSISTENT BUT
THEY ARE NOT INEVITABLE.
WE'VE OBSERVED REDUCTIONS IN
DISPARITY OVER TIME IN CERTAIN
DOMAINS AS WELL AS LOST GROUND
AND SEEING WIDENING OF
DISPARITIES IN CERTAIN DOMAINS
OVER TIME.
IF WE'RE SERIOUS ABOUT REDUCING
DISPARITIES AND DEMENTIA WE HE
TO TRACK OVER TIME TO UNDERSTAND
WHETHER WE'RE MAKING PROGRESS OR
POSSIBLY LOSING GROUND.
THANK YOU VERY MUCH.
>> OKAY.
IS THERE AN ECHO?
THANK YOU.
SO WE'RE GOING TO GO TO PUBLIC
COMMENTS IN THE PANEL
DISCUSSION, 15 MINUTES FOR
QUESTIONS FROM EVERYBODY.
I WANT TO TAKE A MINUTE TO
ORIENT YOU FOR THE PUBLIC
COMMENT TIMES.
YOU'RE GOING TO -- IF YOU WANT
TO ASK A QUESTION, RAISE YOUR
HAND USING THE "RAISE HAND"
FEATURE, ALONG THE TOP OF THE
TEAMS, WEBSITE IF YOU'RE ON THE
BROWSER, OR APP.
WE'LL TAKE THE QUESTIONS IN
IN THE
ORDER THEY COME.
ONCE YOUR HAND IS RAISED, WE
WILL ENABLE YOUR MICROPHONE AND
CAMERA.
PLEASE WATCH FOR THAT.
WATCH FOR THE PROMPT.
AGREE AND THEN GO AHEAD AND TURN
ON USUAL CAMERA -- YOUR CAMERA
TO ASK THE QUESTION.
IF THERE'S A PROBLEM, WE'LL JUST
GO TO THE NEXT QUESTION AND COME
BACK.
THERE'S ALSO ANOTHER WAY TO
SUBMIT QUESTIONS TO US, IF
YOU'RE WATCHING ON VIDEOCAST,
THERE'S A SEND LIVE FEEDBACK
BUTTON.
I WILL RECEIVE AN E-MAIL WITH
THAT QUESTION SO I CAN ASK THE
QUESTION ON YOUR BEHALF.
LET'S GIVE IT A TRY.
AND MARIA, WE HAVE THE FIRST
QUESTION FROM DALE.
AND THEN ANYONE ELSE WHO WANTS
TO JOIN THE -- THINK OF IT AS A
VIRTUAL MICROPHONE LINE TO JOIN.
OKAY.
I'LL HAND OFF TO YOU GUYS.
DALE, ARE YOU ABLE TO UNMUTE AND
TURN ON YOUR CAMERA?
>> IS IT WORKING?
>> WE GOT YOU.
>> OKAY, GOOD.
THANK YOU VERY MUCH.
THIS HAS BEEN FASCINATING.
ALL OF THE THINGS THAT NEED TO
BE CONSIDERED, I WOULD LIKE TO
ASK A QUESTION, AFTER YOU APPLY
ALL THIS WHAT HAVE YOU FOUND
OUT?
WHAT'S BEEN THE OUTCOME?
YOU HAVE ALL THESE THINGS THAT
YOU DO, BUT THE END PRODUCT IS
HOW DID THE VARIOUS VARIABLES
YOU'RE LOOKING AT AFFECT THE
PERCENTAGE OF PEOPLE THAT WILL
GET THE VARIOUS DIMENSIONS AND
ATTENDANCE TO ALZHEIMER'S,
THAT'S MY QUESTION.
>> I CAN TAKE AN INITIAL
RESPONSE AND PEOPLE CAN CHIME
IN.
I THINK ONE OF THE BEST NEW
STORIES WE SHOULD REALLY BE
TALKING ABOUT MORE IS THE CHANGE
IN AGE-SPECIFIC INCIDENCE RATES
OF DEMENTIA.
AND WHAT WE'VE SEEN IN TRENDS
OVER THE LAST RECENT DECADES.
ALTHOUGH OUR POPULATION IS
GROWING OLDER, AND SO THERE'S AN
ECHO.
I WONDER IF SOMEBODY COULD MUTE.
SO OVER THE LAST FEW DECADES WE
HAVE SEEN TRENDS THAT THERE ARE
MORE AND MORE DEMENTIA CASES
BECAUSE THERE ARE MORE AND MORE
OLDER ADULTS, BUT IF YOU LOOK AT
ANY GIVEN AGE GROUP THE
INCIDENCE OF DEMENTIA IS
DECLINING.
NOW, THERE'S SOME DISCUSSION
ABOUT EXACTLY WHY THAT IS.
I THINK ONE OF THE BEST
EXPLANATIONS FOR THAT IS HUGE
INCREASES IN EDUCATIONAL
ATTAINMENT THAT HAS BEEN
ACHIEVED IN THE LAST 30 YEARS.
I THINK THAT'S A REALLY GOOD
NEWS STORY THAT HAS PAID OFF
THAT WE WOULD BE IN A WORSE
SITUATION WITH RESPECT TO BURDEN
OF DEMENTIA HAD IT NOT BEEN FOR
INVESTMENTS.
THOSE INVESTMENTS, KACIE SHOWED
A PICTURE SLOWING DIFFERENCE IN
TERM LENGTH IN THE COUNTRY, IN
THE TIME WHEN THERE WERE
RACIALLY SEGREGATED SCHOOLS.
INVESTMENTS TO GET EVERYBODY
ACCESS TO EDUCATION WERE
CHALLENGING, HUGE ACHIEVEMENT OF
OUR PARENTS, GRANDPARENTS, TO
GIVE PEOPLE EDUCATIONAL ACCESS.
THAT IS STILL PAYING OFF FOR US
IN TERMS OF DEMENTIA RISK.
I'LL HAND IT TO ANYBODY ELSE
THAT HAS ANYTHING TO ADD.
>> THANK YOU, MARIA.
THAT'S VERY HELPFUL.
AS AGE IS GOING ON, WE WOULD
EXPECT MORE DEMENTIA BUT WHAT
WE'RE GETTING IS LESS.
>> THAT'S RIGHT.
>> DUE TO EDUCATIONAL LEVEL.
>> THAT'S RIGHT.
THERE'S MORE DEMENTIA BUT IN ANY
GIVEN AGE GROUP THERE'S LESS,
IT'S GOING DOWN.
THEREFORE THE DEMENTIA BURDEN
WOULD BE MORE SUBSTANTIAL IF WE
DIDN'T HAVE THOSE INVESTMENTS.
THANKS FOR THE QUESTION ALSO.
>> NEXT PERSON, OR YOU CAN GO
THROUGH ONE BY ONE.
>> TRY TO USE YOUR MICROPHONE
AND CAMERA.
>> CAN YOU SEE OR HEAR ME?
>> YEP.
>> ALL RIGHT.
THANK YOU FOR THIS OPPORTUNITY.
THERE ARE SEVERAL THINGS.
ONE OF MY QUESTIONS IS THE
FOCUS -- DOES THE FOCUS STILL
REMAIN ON THE MEDICAL MODEL OF
CARE?
THE WORDS OR TERMINOLOGY I'VE
HEARD IN THE RECOMMENDATIONS ARE
ACCESS TO CARE, TREATMENT,
DIAGNOSIS, AND THEN THERE WAS A
FOCUS ON PREVENTION BUT IT
WASN'T CLEAR TO ME HOW MUCH
EMPHASIS STILL REMAINS ON
PREVENTION VERSUS TREATMENT
WHICH OCCURS DOWNSTREAM SO FROM
A PUBLIC HEALTH PERSPECTIVE I
WAS WANTING TO KIND OF LEARN
MORE ABOUT HOW MUCH IS THE FOCUS
ON PREVENTION IN TERMS OF
PERCENTAGE, VERSUS THE
DOWNSTREAM FACTORS OR OUTCOMES,
AND THEN IN THE WORKFORCE, I
LIVE IN RURAL AREA, THERE'S NO
UNIVERSITY CLOSE TO ME.
I WORK IN HYBRID MODEL.
I'VE DONE THAT FOR THE LAST
SEVEN YEARS.
I'VE PUBLISHED, DONE MORE
RESEARCH IN MY LIFETIME DOING
THAT THAN SPENDING THREE HOURS
COMMUTING IN TEXAS WHICH I DID
FOR 23 YEARS OF MY LIFE.
AND IN REALITY SUCH POSITIONS
ARE PART TIME, IT'S BEEN
CHALLENGING TO FIND A FULL-TIME
POSITION.
NIH CAREER AWARDS REQUIRE
FULL-TIME POSITION, ALZHEIMER'S
ASSOCIATION REQUIRES FULL-TIME
POSITION, EVEN SOME OF THE
DIVERSITY PROGRAM REQUIRES YOU
TO BE NOT ASIAN, BLACK AND
HISPANIC COLLEAGUES I'M HAPPY
FOR HAD BETTER SUCCESS IN
WORKFORCE DEVELOPMENT
OPPORTUNITIES SO IT'S BEEN A
CHALLENGE, SOMEONE LIKE ME,
LIVING IN RURAL AMERICA, AND
SUBGROUP OF ASIAN AMERICANS THAT
JUST CANNOT FIND A PLACE TO
SUSTAIN.
I WAS HOPING TO LEARN HOW --
WHAT ARE SOME MECHANISMS IN THE
WORKFORCE DEVELOPMENT PLAN THAT
WILL ALLOW FOR ME TO REMAIN
ENGAGED IN THIS WORK I'M SO
PASSIONATE ABOUT SO THANK YOU
FOR LISTENING.
>> THANK YOU FOR THAT QUESTION.
WHY DON'T WE START WITH THE
PREVENTION PART OF THE QUESTION.
I CAN START, OTHER PEOPLE --
I'LL START, I HOPE THE REST OF
THE TEAM WILL CHIME IN.
I THINK WE ALL FEEL STRONGLY
THAT WE NEED A COMBINATION OF
BOTH WHAT ARE CLASSICALLY UNDER
THE REPERTOIRE OF MEDICAL CARE
AND NON-MEDICAL CARE RESOURCES
AND APPROACHES.
I THINK THE ISSUE OF PREVENTION
WITH DEMENTIA IS ACTUALLY REALLY
FUZZY BECAUSE THE PERIOD WHERE
BETWEEN WHEN THE VERY EARLY
KINDS OF DISEASE AND WHEN PEOPLE
GET DIAGNOSED IS SO LONG.
I THINK THERE'S REALLY A
DECADE-LONG PERIOD WHEN PEOPLE
ARE DEVELOPING UNDERLYING
DISEASE PROCESSES AND THERE IS A
MOMENT WHEN WE CAN INTERVENE ON
THOSE THINGS WE CONSIDER RISK
FACTORS, BUT ARE EXACERBATING
PROGRESSION, EXTREMELY
IMPORTANT.
WE DIDN'T SAY 40% THIS, 50%
THAT, THERE'S NO QUESTION THE
COMMITTEE FEELS WE REALLY NEED
TO HOLD ATTENTION TO BOTH SIDES
OF THAT EQUATION, PREVENTING AND
DELAYING DEMENTIA BUT ALSO
MAKING SURE PEOPLE WHO ARE ON
THE DEMENTIA SPECTRUM ARE
GETTING CARE AND RESEARCH THEY
NEED TO LIVE FULFILLING LIVES AT
THE MAXIMUM POSSIBLE LEVEL OF
SOCIAL ENGAGEMENT.
DOES ANYBODY WANT TO ADD
ANYTHING?
>> YEAH, THANK YOU SO MUCH, DR.
GLYMOUR.
IT MAY NOT BE AS APPARENT BUT I
WOULD SAY MAJORITY OF OUR
RECOMMENDATIONS ACTUALLY ARE FOR
PREVENTION AND CARE, FOR
EXAMPLE, WE DON'T ADEQUATELY
TRAIN INDIVIDUALS, WE MAY BE
MISSING SOME OF THESE THINGS
THAT ARE LEADING TO DEMENTIA.
AS DR. GLYMOUR STATED, THERE'S
THIS EARLY DEVELOPMENT THAT
WE'RE NOT ACCOUNTING FOR,
BECAUSE WE'RE UNSURE WHEN TO
ACTUALLY START TARGETING AND
MEASURE, WHERE THE MID-LIFE
RECOMMENDATION CAME IN AS WELL.
THE FACTORS THAT LEAD TO
DEMENTIA OCCUR OVER A LIFE
COURSE AND THAT'S WHY A LOT OF
THIS HAS TO DO WITH LIFE COURSE
PERSPECTIVE RATHER THAN JUST THE
ADDRESSING 65 AND OLDER FOR THE
GROUP.
>> DOES ANYBODY WANT TO RESPOND
ABOUT THE CAREER DEVELOPMENT
MECHANISMS?
>> YEAH, I'M HAPPY TO START THE
CONVERSATION.
I WANT TO SAY FIRST, THANK YOU
SO MUCH FOR BRINGING THAT TO OUR
ATTENTION, FOR SHARING YOUR
EXPERIENCE.
YEAH, I THINK, YOU KNOW, YOU
BRING UP VERY GOOD POINTS WHICH
HIGHLIGHT SOME -- LIKE THE
OVERALL BROAD THEME ABOUT
PROVIDING ADDITIONAL TRAINING
OPPORTUNITIES FOR EARLY CAREER
INDIVIDUALS AND AS WELL AS
PEOPLE ENGAGED IN THIS KIND OF
WORK THAT WE MEAN BROAD ASPECTS
NOT NECESSARILY BASED ON
SOMEONE'S RACE OR ETHNICITY, YOU
MENTIONED YOU'RE WORKING IN A
RURAL SETTING THAT COMES WITH
ITS OWN LIMITATIONS.
I THINK WE WILL WORK ON I THINK
AS MUCH AS WE CAN TO DOUBLECHECK
RECOMMENDATIONS THAT MIGHT BE
MORE APPLICABLE TO THAT.
SOME OF THE THINGS WE WERE
THINKING ABOUT FOR THE ENHANCING
TRAINING, WE'RE TRYING TO PUSH
THAT TO SUPPORT PROGRAMMATIC
INFRASTRUCTURE AND RESOURCES TO
PROMOTE HIGHLY SKILLED
WORKFORCE, CREATING STRUCTURES
FOR BRIDGE FUNDING, GRANTS,
INVESTING IN RESOURCES TO
OVERCOME BARRIERS, PROMISING
SCHOLARS FROM SUCCEEDING IN
RESEARCH CAREERS WHICH YOU
HIGHLIGHTED A FEW, ESPECIALLY
WITH MENTIONING HOW BACKGROUNDS
FROM SOUTH ASIAN DESCENT WHICH I
THINK THANK YOU FOR SHARING, WE
WOULD WORK TO MAKE SURE THAT
SOME OF THESE RECOMMENDATIONS
CAN BE BE A ACCOUNTABLE -- CAN
BE APPLICABLE TO WHAT YOU'RE
BRINGING UP.
>> A LOT OF MECHANISMS RELATED
TO PROMOTING DIVERSITY IN
SCIENCE HAVE BEEN RECENTLY
CANCELED, AND IT IS ON THE ONE
HAND BREAKING MY HEART BECAUSE I
THINK THOSE HAVE BEEN REALLY
VALUABLE FOR ALLOWING FANTASTIC
SCIENTISTS TO LAUNCH CAREERS AND
BE SUCCESSFUL.
ON THE OTHER HAND, THINK ALL OF
US CAN LOOK AT THOSE MECHANISMS
AND IDENTIFY WAYS THEY COULD BE
IMPROVED.
I REALLY HOPE THAT THIS IS A
MOMENT WHEN WE CAN TRY TO TACKLE
SOME VERY CHALLENGES THAT YOU
RAISE, AND COME BACK WITH BETTER
STRUCTURES AND MECHANISMS TO
SUPPORT EVERYONE WHO WANTS TO DO
GREAT SCIENCE TO REDUCE
DEMENTIA, TO JOIN THE FIELD AND
CONTRIBUTE.
>> THANK YOU VERY MUCH.
THANK YOU.
BEST WISHES.
>> THANK YOU.
LET'S TRY TO BE CONCISE IN THE
QUESTIONS AND ANSWERS SO WE CAN
GET THROUGH EVERYBODY.
WE'RE GOING TO END -- WE'RE
GOING OVER TIME BUT WE'RE GOING
TO GO INTO THE BREAK.
AND WE'LL END THE MICROPHONE
TIME AT 2:15.
WE HAVE FIVE MORE MINUTES.
AND WE'LL TAKE THE NEXT QUESTION
FROM MITCHELL.
>> THESE ARE ALL VERY IMPORTANT
POINTS IN TERMS OF IDENTIFYING
DIFFERENT POPULATIONS AND
OVERREPRESENTING AND SO ON.
I WANTED TO RAISE THE ISSUE THAT
DIFFERENT POPULATIONS MAY
HAVE -- BECAUSE WE KNOW NOW
INCREASINGLY WE'RE AWARE THAT IN
ANY GIVEN PATIENT WITH A
COGNITIVE IMPAIRMENT OR
DEMENTIAS THERE ARE LIKELY
MULTIPLE ETIOLOGIES IN ANY GIVEN
PERSON AND THAT MAY VARY, THAT
MIX OF POSSIBLE ETIOLOGIES,
LIKELIHOOD OF THOSE MAY VARIABLE
ACROSS DIFFERENT POPULATIONS SO
I WANTED TO MAKE SURE THOSE
THOSE POSSIBLE DIFFERENCES, MIX
OF HETEROGENEITY IN PATHOLOGY IS
TAKEN INTO ACCOUNT WHEN STUDYING
DIFFERENT POPULATIONS.
THANK YOU.
>> THANK YOU.
GREAT POINT.
WE AGREE.
>> SOMEBODY ELSE?
>> CLIFF?
>> HI, EVERYONE.
THANK YOU TO THE COMMITTEE.
FANTASTIC PRESENTATION.
I HAVE A QUESTION WHICH IS ON
THE PRACTICAL SIDE ABOUT DATA
HARMONIZATION, POTENTIALLY
DEVELOPING SYNTHETIC LIFE COURSE
DATA.
WHEN WE WORK WITH DISAGGREGATED
RACIAL AND ETHNIC DATA IN THESE
NATIONAL LEVEL DATASETS THOSE
OFTEN COME WITH ADDITIONAL
PROTECTIONS AS THEY SHOULD AND
RESTRICTIONS TO DATA ACCESS AND
ALSO HAVE THEIR OWN ENVIRONMENTS
WE CAN CONNECT WITH RESTRICTED
DATA, A HUB DOESN'T HAVE
CONNECTION TO EARLY LIFE COURSE
DATA, FOR EXAMPLE.
I WONDER IF THE COMMITTEE
THOUGHT THROUGH PRACTICALITIES
OR A PROJECT TO DEVELOP
INFRASTRUCTURE TO FACILITATE
HARMONIZATION PROCESS?
THANK YOU VERY MUCH.
>> JUST LAUGHING BECAUSE THAT'S
LIKE IT WOULD TAKE A COUPLE
YEARS OF RESPONSE.
GREAT POINT.
WE'RE WORKING ON MULTIPLE
EFFORTS TO SOLVE THIS CHALLENGE
AND WITHOUT GOING INTO THE
TECHNICAL DETAILS THEY RELY
VARIOUSLY ON STRATEGIES LIKE
SYNTHETIC DATASETS, IMPUTATION,
MOVING SUMMARY DATA ACROSS
BARRIERS, AND FINDING PATHWAYS
TO COMBINE DATA, AND WHILE
PRESERVING PRIVACY.
I AGREE, THERE ARE BIG TECHNICAL
CHALLENGES BUT ALSO THESE ARE
SOLVABLE PROBLEMS IF WE HAVE THE
RESOURCES TO DO IT.
ANYBODY WANT TO ADD TO THAT?
THANK YOU FOR RAISING THAT SUPER
IMPORTANT ISSUE, PRETTY
IMPORTANT WORK TO BE DONE THERE.
I'M HAPPY TO TALK MORE ABOUT IT.
I'M AWARE OF OTHER PEOPLE.
>> THANK YOU.
PENNY, YOU'RE NEXT.
>> I WANTED TO ACKNOWLEDGE, I
THOUGHT THE BIOMARKERS
RECOMMENDATION WAS ON POINT,
CREATING SCALABLE BIOMARKERS
THAT COULD DETECT ACCESS OR
DETECT DEMENTIA, EXCUSE ME.
WE TALKED ABOUT DIFFERENT KINDS
OF DEMENTIA.
AND WE KNOW AT THE END OF THE
DAY DISPARITIES ARE OFTEN CAUSED
BY COST, COST OF HEALTH CARE.
NOT TO MENTION AVAILABILITY OF
SPECIALIZED NEUROLOGY CLINICS
THAT CAN OFTEN HAVE LONG
WAITLISTS SO ONE THING TO
SUGGEST IS SIMILAR TO THAT
SCALABLE BIOMARKERS
RECOMMENDATION, SOMETHING THAT'S
A NON-SPECIFIC SCREENING
BIOMARKER, BECAUSE RESEARCHERS
ALMOST INEVITABLY WANT TO GO AT
SPECIFIC RESEARCHERS, WE WANT TO
UNDERSTAND, TO DOCUMENT WHAT
THESE PEOPLE HAVE SO WE CAN
FIGURE OUT HOW TO CARE.
WE HAVE TO IDENTIFY WITH LOW
COST TOOLS WHO NEEDS TO BE SEEN
BY A NEUROLOGIST AND FOR SOME
THEY ARE NOT GETTING THERE.
AND I THINK THERE ARE POTENTIAL
FOR THOSE TYPES OF BIOMARKERS TO
BE DEVELOPED.
SO THANK YOU FOR YOUR WORK.
IT'S REALLY EXCITING TO SEE
THESE RECOMMENDATIONS MOVE
FORWARD.
>> THANK YOU FOR YOUR COMMENT.
EVERYONE HERE, YOU SAW
EVERYONE'S HEAD SHAKING UP AND
DOWN.
WE FULLY AGREE AND UNDERSTAND
THAT'S A NECESSARY DIRECTION.
THANK YOU FOR YOUR COMMENT.
WE APPRECIATE IT.
>> WE HAVE TIME FOR ONE MORE
QUESTION, PROBABLY.
DALE, WOULD YOU MIND IF WE GO TO
BERNARD SO WE CAN GIVE HIM A
CHANCE TO ASK A QUESTION?
>> YES, I WOULD, THANK YOU.
THIS HAS TO DO WITH THE
DEMENTIAS GOING ON WITHOUT US
BEING ABLE TO DETECT IT.
YOU HAD MENTIONED THAT EARLIER.
MY QUESTION IS THIS.
WITH THE BLOOD TEST YOU CAN DO
BLOOD TESTS TO CHECK BETA
AMYLOID AND MAYBE TAU
PERCENTAGES.
IF YOU DO THAT BLOOD TEST ON A
REGULAR CHECKUP, ANNUAL CHECKUP,
FOR EXAMPLE, WOULD IT BE -- IS
THAT TEST SENSITIVE ENOUGH TO
SAY, UH-OH, YOU GOT POTENTIAL
HERE OF BEING AT HIGH RISK WITH
THE DATA WE READ AND CATCH IT
SOONER AND GET IT INTO YOUR
SYSTEM TO BE ABLE TO FOLLOW
THOSE INDIVIDUALS, YOUR RESPONSE
PLEASE?
>> I CAN START.
I THINK THERE MIGHT BE A
CONFLICT ON THIS ANSWER
ACTUALLY, BETWEEN SCIENTISTS.
MY PERSPECTIVE, YES AND NO.
UNFORTUNATELY, JUST BECAUSE YOU
HAVE HIGHER LEVELS OF AMYLOID
DOES NOT MEAN THAT YOU ARE GOING
TO GET DEMENTIA.
IN FACT, WE SEE THAT LIKE AROUND
30-ISH PER CENT OF THOSE
COMPLETELY HEALTHY COGNITIVELY
NORMAL AND OVER THE AGE OF 65
HAVE AMYLOID.
WE AGE AND THINGS GO WRONG IN
OUR BRAIN, RIGHT?
SO JUST BECAUSE YOU HAVE THAT
DOES NOT MEAN THAT YOU ARE GOING
TO GET DEMENTIA.
BUT IT CAN BE A SIGN, RIGHT
OBVIOUSLY THIS IS WHAT WE HAVE
AS AN ALZHEIMER'S DISEASE MARKER
SO IT'S HARD TO DIRECTLY INPUT
THIS I THINK INTO CLINICAL
PRACTICE FOR THAT REASON
BECAUSE, YES, IT CAN BE A SIGN
AND MIGHT BE A GOOD IDEA TO
FOLLOW PEOPLE FOR A LENGTH OF
TIME TO SEE.
AND IT CAN BE DEFINED AS
PRE-CLINICAL MARKER BUT YOU'RE
GOING TO GET A VARIABLE ANSWER.
DOES ANYONE ELSE WANT TO SPEAK
TO THAT?
>> I WANT TO ADD JUST THE THEME
FOR SECTION IN GENERAL THAT I
GUESS PREVENTION, TO GET AT
PREVENTION WE'RE RECOMMENDING
THINGS NOT CURRENTLY BEING DONE
OR NOT ENOUGH ACROSS THE FIELD
WHICH IS WHY WE DON'T HAVE A
CURE, DON'T ANSWER AS BECAUSE
WE'RE NOT STUDYING THE RIGHT
PEOPLE, NOT ASKING THE RIGHT
QUESTION, LOOKING AT ONE
VARIABLE AT A TIME, NOT
MULTI-LEVEL FACTORS.
UNLESS WE HAVE ANSWERS TO
RECOMMENDATIONS THAT WE'RE
GIVING TODAY WE WON'T HAVE
PREVENTION, WE WON'T HAVE CURE.
BUT I THINK IN THE PROCESS IT'S
WHAT WE'RE WORKING TOWARDS.
>> THANK YOU.
WE'RE GOING TO TAKE A
THREE-MINUTE BREAK AND, BERNARD,
BRING YOUR QUESTION TO THE INPUT
SESSION AT 3:05.
>> LET ME WRITE IT DOWN.
>> THANK YOU.
>> OR TYPE IT IN, THAT WOULD BE
SUPER HELPFUL.
AMBER, THEY HAVE ACCESS TO CHAT?
>> THEY DO NOT.
WE'LL LET EVERYBODY GO ON BREAK
AT START AGAIN AT 2:20.
>> GREAT, I'LL COME BACK.
>> THANK YOU.
>> WE'LL TRY TO GET STARTED AT
2:20 WITH THE NEXT SESSION.
>> READY TO GO?
>> IF YOU ARE.
I CAN'T SEE.
>> I'M FARAH LUBIN, PROFESSOR AT
UAB, AND I AM ONE OF THE CHAIRS
FOR THE EXPOSOME COMMITTEE,
INTRODUCING THE OVERALL CONCEPT
OF THE NEURAL EXPOSOME.
AND THEN INTRODUCE THE FIRST
RECOMMENDATION.
IT'S BEEN A PLEASURE TO WORK
WITH EVERYONE ON THE
SUBCOMMITTEE AND WE HOPE TO HAVE
VIGOROUS RESPONSE TO OUR
RECOMMENDATIONS.
NEXT SLIDE PLEASE.
OKAY, NEXT SLIDE PLEASE.
I HAVE NO DISCLAIMERS OR
DISCLOSURES.
NEXT SLIDE PLEASE.
WHILE THE ROLE OF HUMAN GENETIC
PREDISPOSITION SUCH AS APOE4
PROVIDED UNPRECEDENTED INSIGHT
INTO THE ETIOLOGIES OF
ALZHEIMER'S DISEASE WE CAN AGREE
THE MAJORITY OF RISK FACTORS
CANNOT BE EXPLAINED BY GENETICS
ALONE.
IT'S IMPORTANT TO UNDERSTAND
INTERACTION BETWEEN GENES AND
OUR ENVIRONMENT PLAYS A ROLE IN
ONSET.
OUR ENVIRONMENT FROM THE AIR WE
BREATHE, FOOD WE EAT, AND WATER
WE DRINK TO CHEMICALS WE INGEST,
STRESS WE EXPERIENCE, INDEED
INFLUENCE OUR HEALTH.
SCIENTISTS STRIVE TO MEASURE THE
EXPOSOME WHICH COMPRISES ALL
NON-HERITABLE FACTORS THAT
AFFECT GENE EXPRESSION ACROSS
THE LIFESPAN.
IMPORTANTLY, MOST OF THESE
EXPOSOME FACTORS THAT INFLUENCES
OUR BODY'S RESPONSE ARE
MODIFIABLE.
SO INDEED STUDY OF EXPOSOME,
KNOWN AS EXPOSOMICS, HAS
POTENTIAL TO PERHAPS UNLOCK A
MORE HOLISTIC APPROACH TO
DISEASE PREVENTION AND MORE
EFFECTIVE AND PERSONALIZED
INTERVENTION.
NEXT SLIDE PLEASE.
RESEARCH INDICATES ENVIRONMENTAL
FACTORS SUCH AS AIR POLLUTION,
AND OTHER TOXINS, IMPACT
A.D.-RELATED COGNITIVE DECLINE.
ON THE OTHER HAND, A BALANCED
DIET AND PROPER NUTRITION AND
REGULAR PHYSICAL ACTIVITY HAVE
BEEN SHOWN TO BE BENEFICIAL FOR
BRAIN HEALTH.
AND CAN REDUCE THE RISK OF
COGNITIVE DECLINE ASSOCIATED
WITH A.D. THUS A GROWING BODY
OF EVIDENCE SUPPORTS THAT
MODIFIABLE RISK FACTORS FOR
DEMENTIA ACCOUNT FOR AROUND 40%
OF CASES, WHICH COULD BE
PREVENTED OR DELAYED.
NEXT SLIDE PLEASE.
IN REGARDS TO LIFESTYLE FACTORS
AND IMPACT ON RISK, RESEARCH
SUGGEST SMOKING AND/OR ALCOHOL
CONSUMPTION CAN INCREASE RISK OF
DEMENTIA WITH A.D., SOCIAL
ENGAGEMENT AND MENTAL
STIMULATION CAN ALSO -- ARE
CRUCIAL FOR MAINTAINING BRAIN
HEALTH AND MAY HELP SLOW
PROGRESSION OF A.D. SLEEP
QUALITY IS CRITICAL FOR BRAIN
HEALTH AND CHANGES IN SLEEP
PATTERNS AND NEURONAL ACTIVITY
CAN PERHAPS SERVE AS BIOMARKERS
FOR A.D. AND INDEED ALL OF
THESE FACTORS WHEN DISRUPTED CAN
ACCELERATE COGNITIVE DECLINE AND
MAY BE ASSOCIATED WITH FASTER
MEMORY LOSS WITH A.D. NEXT
SLIDE PLEASE.
SO WE'RE PRESENTED WITH A GREAT
NUMBER OF CHALLENGES WHEN IT
COMES TO MEASURING THE EXPOSOME,
AND ITS IMPLICATIONS FOR
PREVENTION AND INTERVENTION IN
A.D. OUR METHODS THAT WE USE
ARE -- NEED TO BE REVISED AND
CONSIDERED IN REGARDS TO
LIFETIME EXPOSURES.
THE NEED FOR INTEGRATED
APPROACHES, POTENTIAL FOR
PERSONALIZED AND PREVENTION
STRATEGIES BY STUDYING THE
EXPOSOMES IS POSSIBLE.
IT'S IMPORTANT FOR US TO
UNDERSTAND EARLY LIFE
INTERVENTIONS, WAYS WE CAN
INTERVENE AND REDUCE AND MODIFY
ENVIRONMENTAL RISK FACTORS.
AND PUBLIC HEALTH POLICIES
TARGETING MODIFIABLE RISK
FACTORS NEED TO BE CONSIDERED.
THE SUBCOMMITTEE HAS PROVIDED A
SERIES OF RECOMMENDATIONS THAT
WE'LL PRESENT.
I'LL PRESENT THE FIRST
RECOMMENDATION AND PASS IT OVER
FOR THE NEXT.
NEXT SLIDE PLEASE.
FIRST RECOMMENDATION, NEXT SLIDE
PLEASE, INVOLVES EXPLORING THE
IDEA OF INVESTIGATING HOW
EXPOSOME AND HUMAN BODY INTERACT
TO INFLUENCE A.D. THE IDEA OF
THE MAIN HALLMARKS OF FEATURES
OF A.D. INVOLVE AMYLOID BAIT
PLAQUES AND NEUROINFLAMMATION
AND SO FORT, HOWEVER MECHANISMS
HYPED FORMATION REMAINS UNCLEAR.
IT IS SUGGESTED PERHAPS
BACTERIAL POPULATIONS IN THE
BODY MAY CONTRIBUTE TO THESE
FEATURES BY PROMOTING
NEUROINFLAMMATION AND PLAQUE
FORMATION.
NEXT SLIDE PLEASE.
FOCUSING ON THE MICROBIOME AND
INFECTIOUS DISEASES, HOW PERHAPS
BY MANIPULATING THESE FACTORS WE
MIGHT ALTER RISK OR PROGRESSION
OF A.D. NEXT SLIDE PLEASE.
ANIMAL MODELS ARE VALUABLE FOR
STUDYING IMPACT OF INFECTIOUS
DISEASES ON LIFESPAN AND A.D.
PROGRESSION.
THESE ANIMAL MODELS ALLOW
RESEARCHERS TO EXPLORE THE
COMPLEX INTERPLAY BETWEEN
INFECTIOUS AGENTS AND
PATHOLOGIES.
ANIMAL MODELS SHOULD BE
UTILIZED, AND TECHNOLOGIES THAT
ENABLE MEASUREMENTS TO
INVESTIGATE HOW INFECTIOUS
DISEASES INFLUENCE ONSET AND
PROGRESSION OF AD/ADRD.
IN CONSIDERATION OF MICROBIOME,
FOR EXAMPLE, THE GUT MICROBIOME,
IT PLAYS A SIGNIFICANT ROLE IN
A.D. WITH ALTERED COMPOSITION.
CHANGES IN THE GUT MICROBIOME
MAY OCCUR BEFORE CLINICAL
SYMPTOMS OF A.D.
>> TWO MINUTES.
>> OF A.D. APPEARANCE.
NEXT.
INFECTIOUS AGENTS MAY PLAY A
ROLE POTENTIALLY CONTRIBUTING TO
NEUROINFLAMMATION ACCELERATING
AMYLOID DEPOSITION.
NEXT SLIDE PLEASE.
SO IN DYSREGULATION WITH
CIRCULATING CELLS, INFLUENCING
DISEASE PATHOLOGY IT'S IMPORTANT
TO DETERMINE WHETHER THERE ARE
DIFFERENCES IN IMMUNE RESPONSES
BETWEEN DIFFERENT STAGES OF A.D.
AND ADRD CLINICALLY AND
PATHOLOGICALLY.
NEXT SLIDE PLEASE.
IT'S IMPORTANT TO CONSIDER THAT
DISRUPTED SLEEP AND CIRCADIAN
RHYTHMS CAN WORSEN WHILE GUT
MICROBIOME IMBALANCES MAY HAVE
DIRECT EFFECT ON BRAIN FUNCTION.
NEXT SLIDE PLEASE.
FINALLY THE IDEA THAT A.D. MIGHT
HAVE AN INFECTIOUS ORIGIN IS A
GROWING AREA OF RESEARCH, THOUGH
NOT YET WIDELY ACCEPTED.
SO IT'S IMPORTANT TO INVESTIGATE
INFECTIOUS ETIOLOGY TO EXPLORE
NEUROPATHOLOGICAL INTERACTIONS
WITH COGNITIVE DEFICITS
ASSOCIATED WITH INFECTIOUS
DISEASES AND ADRD.
I'LL TURN IT OVER TO DR. LAMAR
TO INTRODUCE OUR SECOND
PRIORITY, RECOMMENDATION 2.
DR. LAMAR?
>> THANK YOU FOR THE OPPORTUNITY
TO REPRESENT THE SUBCOMMITTEE ON
THE NEXT RECOMMENDATION.
NEXT SLIDE PLEASE.
I DON'T HAVE DISCLAIMERS.
NO REAL DISCLOSURES.
I'M FUNDED TO DO EXPOSOME WORK.
NEXT SLIDE PLEASE.
SO FOR OUR SUBCOMMITTEE
RECOMMENDATION 2, REALLY TO
ADVANCE MECHANISTIC STUDIES ON
INTERACTION BETWEEN EXPOSOME AND
AD/ADRD NEUROPATHOLOGY EXPLORING
MECHANISMS BROKEN DOWN INTO FOUR
SUBCOMPONENTS THAT I'LL EXPLAIN
FURTHER.
2.1 IS INVESTIGATE THE ROLE OF
ENVIRONMENTAL EXPOSURES.
YOU CAN SEE IN THIS FIGURE
ADAPTED FROM ERICKSON 2016 PAPER
AND ALSO OUR CURRENT NIH
DIRECTOR'S 2022 PAPER, THERE ARE
EPIDEMIOLOGIC STUDIES IN HUMANS
AND ANIMALS THAT REINFORCED
ORIGINALS INSURE THAT ADVERSE
PERINATAL ENVIRONMENTS MAY LEAD
TO CHRONIC DISEASES IN
ADULTHOOD, SOME OF WHICH IN
TERMS OF ENDS ORGAN DAMAGE AND
RESULTING DIAGNOSES ARE SHOWN IN
THE FIGURE.
LESS WORK, NEXT SLIDE PLEASE,
HAS BEEN DONE EXAMINING HOW
EARLY LIFE INCLUDING IN UTERO
AND LATER LIFE EXPOSURES ON THE
LEFT WITH THE NINDS NEURAL
EXPOSOME IMPACTS PATHOLOGY,
COGNITIVE DECLINE, AGING PROCESS
MORE GENERALLY.
FURTHERMORE LESS WORK HAS BEEN
DONE IN IDENTIFYING SENSITIVE
PERIODS LIKE THOSE EXAMPLES ON
THE RIGHT-HAND SIDE OF YOUR
SCREEN WHEN INTERVENTIONS MIGHT
BE MOST EFFECTIVE TO MITIGATE
NEURODEGENERATION.
THERE IS AN EXAMPLE OF WORK WITH
THE HELIX PROJECT, CAPTURING
EXPOSOMIC INFORMATION ACROSS THE
PERINATAL PERIOD AND CHILDHOOD
IN SIX EUROPEAN COUNTRIES.
NEXT SLIDE PLEASE.
THAT SAME PROJECT CAN HELP
ILLUSTRATE THE SECONDS BULLET
POINT WHICH IS TO ELUCIDATE
SYNERGISTIC EFFECTS OF
ENVIRONMENTAL FACTORS ON
NEURODEGENERATION.
WE CAN AGREE ENVIRONMENTAL
FACTORS LIKE THOSE SHOWN IN THE
BLUE RECTANGLE ON THE LEFT
RARELY OCCUR IN ISOLATION.
ALTHOUGH THAT'S OFTEN HOW THEY
HAVE BEEN INVESTIGATED.
MEASURING MULTIPLE EXPOSURES
IDEALLY AT MULTIPLE TIME POINTS
IN THE LIFESPAN, ACTUALLY AN
EXAMPLE OF WHICH IS SHOWN HERE
WITH THE HELIX PROJECT, WHERE
THERE'S SAMPLING, MULTIPLE
EXPOSURES, THAT CAN ALLOW FOR
UNDERSTANDING OF HOW EXPOSURES
MAY BE GROUPED TOGETHER, BASED
ON COMMON INFLUENCES AS
REPRESENTED ON THE RIGHT-HAND
SIDE OF THE SCREEN.
NEXT SLIDE PLEASE.
OUR SUBCOMMITTEE IS ADVOCATING
FOR EXPLORATION NOT JUST IN
UTERO OR CHILDHOOD BUT REALLY
HOW COMBINATIONS OF EXPOSURES
INTERACT TO ACCELERATE AGING AND
ADRD PROGRESSION USING MULTIPLE
EXPOSURE MODELS TO CAPTURE
COMPLEX REAL WORLD RISK FACTORS
AND ASSESS THEIR IMPACT ACROSS
THE ENTIRE LIFESPAN.
NEXT SLIDE PLEASE.
WE CALL FOR RESEARCHERS TO
ADVANCE DYNAMIC TECHNOLOGIES TO
STUDY ENVIRONMENTAL IMPACTS,
APPLYING REALTIME MONITORING
TOOLS, TO LEVERAGE THESE TOOLS
TO IDENTIFY BIOMARKERS ARE EARLY
PATHOLOGY AND TRACK DISEASE
PROGRESSION.
NEXT SLIDE PLEASE.
LASTLY, RECOMMENDATION 2, WE'RE
ALSO HIGHLIGHTING NEED TO TARGET
EPIGENETIC FOR THERAPEUTIC
INTERVENTIONS, SPECIFICALLY HOW
THE EXPOSOME AS REPRESENTED AT
THE TOP OF THE INTEGRATION OF
MULTI-OMICS DATA ON THE LEFT
AFFECTS NOT JUST EPIGENETIC
CLOCK BUT KEY PATHOGENIC
PATHWAYS SUCH AS AMYLOID-BETA
DEPOSITION AND WHEN INTEGRATED
BY THE FIGURE FROM THE 2024
PAPER MAY FACILITATE
UNDERSTANDING OF DISEASE
TRAJECTORIES AS REPRESENTED ON
THE RIGHT-HAND SIDE OF THE
SCREEN SO ULTIMATELY WE CAN
ASSESS WHETHER MANIPULATING
SPECIFIC EPIGENETIC FACTORS
ENHANCE ADRD RESILIENCE OR ALTER
DISEASE PROGRESSION.
NEXT SLIDE PLEASE.
NOW I'D LIKE TO HAND THINGS OVER
TO MY COLLEAGUE, AISHA
DICKERSON, TO TALK ABOUT
RECOMMENDATION 3.
>> THANK YOU FOR THE OPPORTUNITY
TO TELL YOU ABOUT OUR LAST
RECOMMENDATIONS, FOCUSING ON
BUILDING RESEARCH INFRASTRUCTURE
FOR THE STUDIES THAT WE'VE BEEN
DISCUSSING.
NEXT PLEASE.
NEXT SLIDE.
I HAVE NOTHING TO DISCLOSE.
NEXT SLIDE.
SO WE HAVE RECOMMENDATION 3 HERE
WHICH IS TO ESTABLISH RESEARCH
INFRASTRUCTURE TO FACILITATE
CLINICAL AND EPIDEMIOLOGICAL
STUDIES ON HOW EXPOSOME INTACTS
ADRD RISK AND COGNITIVE DECLINE
OUTCOMES.
NEXT SLIDE PLEASE.
NEXT SLIDE.
WE HAVE FOUR SUBBULLET POINTS
FOR THIS PARTICULAR
RECOMMENDATION.
I'LL GO THROUGH EACH ONE BY ONE.
SO FOR THE FIRST BULLET WE LIKE
TO FOCUS ON IDENTIFYING
ENVIRONMENTAL RISK SUCH AS
TOXICANT EXPOSURES AS WELL AS
IDENTIFY RESILIENCE FACTORS LIKE
NUTRITION, SLEEP, AND THINGS
LIKE THAT TO DETERMINE THE
PATHOGENIC CAUSALITY OF
ENVIRONMENTAL RISK FACTORS WITH
ADRD.
NEXT SLIDE.
AND SO FOR SUBBULLET 2 WE'D LIKE
TO IMPROVE CHARACTERIZATION OF
THE ENVIRONMENTAL EXPOSURES AND
CREATE NECESSARY TOOLS TO
PROPERLY IDENTIFY MOST HAZARDOUS
ENVIRONMENTAL EXPOSURES.
AS WELL AS MOST RESILIENT
FACTORS IN THE EXPOSOME FOR RISK
AND PROGRESSION.
NEXT SLIDE.
SO WE HAVE A SUB-SUBBULLET, WE
THINK THE BEST WAY TO
POTENTIALLY DO THIS WAS ALIGNED
WITH ONE OF THE QUESTIONS FROM
THE PREVIOUS SESSION TO
POTENTIALLY INITIATE CONSORTIUM
OF EXISTING AGING COHORTS TO
LEVERAGE ONGOING RESEARCH BOTH
IN AGING COHORTS BUT IN ADDITION
MIDDLE AGE COHORTS.
NEXT SLIDE.
SO THIS IS ALREADY BEING
IMPLEMENTED FOR CHILD HEALTH
THROUGH THE ENVIRONMENTAL
INFLUENCES ON CHILD HEALTH
OUTCOMES CONSORTIUM BUT WE THINK
WE COULD POTENTIALLY IMPLEMENT
THIS THROUGH BOTH AGING COHORTS
LIKE N-HATS, ALSO THROUGH MIDDLE
AGED COHORTS TO TRY TO GET MORE
IN LINE WITH THE LIFE COURSE
EXPOSURES.
NEXT SLIDE.
ON TOP OF USING COLLECTION OF
DATA WE ALSO WOULD LIKE TO
PROVIDE A NEW INFRASTRUCTURE AS
WELL AS BETTER TECHNOLOGY AND
EQUIPMENT FOR IMPROVING THE
EVALUATION OF THE EXPOSOME.
PRIMARILY THROUGH A PATHOLOGICAL
SUITE OF SAMPLES, NOT TYPICAL
BIOLOGICAL MARKERS LIKE BLOOD,
URINE, SALIVA AND TEETH, BUT
THIS IS DATA TO COLLECT BRAIN
SAMPLES DURING AUTOPSIES AS WELL
AS ORGAN SYSTEMS.
NEXT SLIDE.
WE BELIEVE THAT COLLECTING THESE
BIOLOGICAL SAMPLES IN REAL TIME
WOULD ALLOW US TO BETTER
HARMONIZE DATA FOR THESE AGING
AND MIDDLE-AGED COHORTS AND
BETTER HARMONIZE OR COME TO
CONSENSUS ON THE PROPER
PHENOTYPES FOR ADRD AND NEURO
COGNITIVE IMPAIRMENT.
NEXT SLIDE.
SO WE RECOGNIZE THAT WITH THESE
ONGOING COHORTS THERE HAVE BEEN
A VARIETY OF ASSESSMENTS USED
AND ABLE TO HARMONIZE THE DATA
FOR A COLLECTIVE POOLED
ANALYSIS, TO HAVE THIS
ENVIRONMENTAL EXPOSURE THAT
PEOPLE COULD COME IN CONTACT
WITH.
NEXT SLIDE.
IN ADDITION TO CHARACTERIZING
THE PRIORITY EXPOSURES WE ALSO
NEED TO ESTABLISH A CODE OF
EXPERTS TO IDENTIFY THE MOST
APPROPRIATE METHODS FOR
ASSESSMENT OF ADRD AND COGNITIVE
DECLINE.
I HAVE THESE PICTURES HERE TO
DEMONSTRATE VARIETY OF EXAMPLES
MUCH CURRENT ASSESSMENTS IN THE
ONGOING AGING AND MIDDLE AGE
COHORTS BUT NEED TO COME TO
CONSENSUS SO WE CAN ANALYZE DATA
COLLECTIVELY.
NEXT SLIDE.
OUR LAST SUBBULLET, 4, TO
PRIORITIZE RESEARCH AND TRIALS
IN POPULATIONS
DISPROPORTIONATELY EXPOSED TO
ENVIRONMENTAL AND SOCIAL
LIFESTYLE FACTORS THAT ADVERSELY
IMPACT RISK OF ADRD.
THIS WILL BE --
>> TWO MINUTES.
>> THANK YOU.
THIS WILL BE THROUGH
ESTABLISHING A NEW AGING AND
DISABILITY RESOURCE CENTER.
WE HAVE SOME ONGOING CENTERS BUT
ESTABLISHING ONE THAT HAS A HIGH
EXPOSOME RISK AREAS WE BELIEVE
WILL BE BENEFICIAL.
WE ALSO WANT TO ENCOURAGE
STUDIES THAT USE STRESS EXPOSURE
TO THESE FRAMEWORKS TO
INVESTIGATE BOTH ENVIRONMENTAL
EXPOSURES AND PSYCHOSOCIAL
STRESSORS TO SEE HOW THEY CAN
COMPOUND ACROSS LIFE COURSE.
LAST SLIDE.
THE REASON WE WANT TO FOCUS ON
THIS IS WE KNOW THAT AREAS THAT
OFT HAVEN HIGH CONCENTRATION OF
LOWER INCOME RISK ALSO THE SAME
AREAS THAT HAVE A HIGHER
CONCENTRATION OF TOXICANTS, AIR
POLLUTION, LEAD-BASED PAINT,
INDUSTRIAL FACILITIES, ALSO
LARGE PROPORTION OF PSYCHOSOCIAL
STRESSORS, SUCH AS CRIME LEVEL,
NOISE POLLUTION, OFTEN THE AREAS
THAT ARE FOOD DESERTS.
KNOWING THAT THESE AREAS OFTEN
HAVE THESE CONCENTRATED
POTENTIAL RISK FACTORS FOR ADRD
WE WOULD LIKE TO PRIORITIZE
FOCUSING ON THESE COMMUNITIES
WHEN WE EVENTUALLY GET THE
INFRASTRUCTURE HOPEFULLY TO
IMPLEMENT THESE STUDIES.
NEXT SLIDE.
I'M GOING TO PASS IT OFF TO THE
NEXT SPEAKER.
>> MEG SMITH TALKING ABOUT THE
FOURTH RECOMMENDATION.
NEXT SLIDE PLEASE.
I WANT TO THANK EVERYBODY FOR
YOUR ATTENTION TODAY, TO THE
NINDS, MY FELLOW COMMITTEE
MEMBERS, I'M WITH AN
ORGANIZATION THAT FUNDS RESEARCH
WITH HIGHEST POTENTIAL FOR
ENDING ALZHEIMER'S, NO CONFLICTS
TO DISCLOSE.
NEXT SLIDE PLEASE.
RECOMMENDATION 4, ALSO PRIORITY
4, DEVELOP COUNTERMEASURES AND
THERAPEUTICS INFORMED BY
MECHANIC KNITS -- MECHANISTIC
UNDERSTANDING FOCUSING ON EARLY
TRIALS FOR BENEFICIAL EFFECTS,
INDIVIDUAL AND COMMUNITY LEVELS.
THANKS TO EPIDEMIOLOGICAL AND
LONGITUDINAL OBSERVATIONAL
STUDIES WE KNOW OF POSITIVE
EXPOSURES THAT CAN REDUCE RISK
AT POPULATION LEVEL.
THE COMMITTEE WAS FOCUSED ON
THAT IN THIS RECOMMENDATION.
NEXT SLIDE PLEASE.
HOWEVER WE DON'T KNOW AS MUCH AS
WE NEED TO ABOUT THESE EXPOSURES
TO OPTIMIZE HOW WE ACT ON THEM
IN TERMS OF OF OBSERVATIONS AND
ASSOCIATIONS.
TO MAKE EVIDENCE FROM
EPIDEMIOLOGICAL STUDIES MORE
ACTIONABLE WE NEED TO MOVE
TOWARDS SPECIFIC UNDERSTANDING.
CONTINUING AND EXPANDING
LONGITUDINAL COHORTS AS WAS
DISCUSSED IN THE PREVIOUS
PRESENTATION, EXTENDING
EPIDEMIOLOGICAL TRIALS IS VITAL
TO THIS KIND OF UNDERSTANDING
BUT SO WILL DESIGNING RIGOROUS
TRIALS THAT COMBINE EXPOSOME
VARIABLES WITH PROFILING.
USE OF DIGITAL TRACKING AND
COMPUTATIONAL AND A.I. TOOLS CAN
HELP UNCOVER ATTRIBUTES AND
MECHANISMS OF BENEFITS.
NEXT SLIDE PLEASE.
SO THIS PICTURE IS GOING TO BE
VERY FAMILIAR TO EVERYBODY WHO
HAS BEEN WATCHING "THE LANCET"
COMMISSION RECORD SHOWED A
NUMBER OF EXPOSURES WHAT WE
ALREADY KNOW ENOUGH TO RECOMMEND
INDIVIDUAL ACTIONS INDIVIDUALS
CAN ADOPT AND INTERVENTION
TRIALS.
COMMUNICATIONS AND STRATEGIES
MUST RECOGNIZE EACH PERSON FACES
DIFFERENT CONSTRAINTS AND ACCESS
TO EXPOSURES DEPENDING ON HEALTH
CONTEXT.
EXISTING DATA SUGGESTS DIFFERENT
INDIVIDUALS WILL SEE DIFFERENT
BENEFITS FROM INTERVENTIONS
DEPENDING ON GENETICS AND HEALTH
STATUS.
IDENTIFYINGWHICH WILL SEE THE
MOST WILL BE IMPORTANT FOR
OPTIMIZING IMPACT.
DRILLING DOWN DETAILS CAN HELP
PUBLIC HEALTH CAMPAIGNS BECOME
EFFICIENT AND EFFECTIVE.
SO, STRONG DATA SUPPORTS POWER
OF HUMAN INTERACTION ONE ON ONE
AND WITHIN COMMUNITIES, FOR
BENEFITS REDUCING RISK,
IMPROVING LIFE EXPERIENCE OF
THOSE EXPERIENCING COGNITIVE
DECLINE.
OUR COMMITTEE DECIDED TO FOCUS
ON THESE TWO FOR THE NEXT
RECOMMENDATIONS,
SUBRECOMMENDATIONS.
LONELINESS, ISOLATION, LOSS OF
SENSE OF PURPOSE, NOT UNIQUE TO
INDIVIDUALS AT RISK OF AND WITH
COGNITIVE DECLINE BUT WORSEN
PROGNOSIS AND MANY COMMUNITIES
MAY LOSE PARTICIPATION EARLIER
THAN OTHERWISE.
UNDERSTANDING BIOLOGICAL IMPACT
OF HUMAN RELATIONSHIPS IS
CHALLENGING BUT UNDERSTANDING
THAT IS IMPORTANT TO
STRENGTHENING RELATIONSHIPS AND
COMMUNITIES.
INTERVENTIONS WILL BE GOOD FOR
ALL OF US, NOT JUST FACING
COGNITIVE DECLINE.
REMOVING BARRIERS SHOULD HAVE
DEEPER STUDY.
NEXT SLIDE PLEASE.
SO WE TOUCHED ON INDIVIDUAL
ACTIONS AND SOCIAL INTERACTIONS
ON THE PREVIOUS SLIDES AND MOVE
TO UNDERSTANDING OF EXPOSURES
AND INDIVIDUAL EXPERIENCES IN
THE WORLD.
GROWING EVIDENCE SUPPORTS ROLE
FOR AIR POLLUTION, HEAT AND
PROCESSED FOODS BUT WE NEED
RESEARCH TO VALIDATE
ASSOCIATIONS, IDENTIFY
BIOLOGICAL MECHANISMS AND
POTENTIAL INTERVENTIONS.
EFFECTIVE POLICIES TO REDUCE
EXPOSURES WOULD STRENGTHEN ALL
OUR HEALTH BUT WE NEED TO MAKE
THEM SPECIFIC.
STRESS ACROSS THE LIFESPAN FROM
POVERTY, VIOLENCE AND SOCIAL
DETERMINANTS OF HEALTH IS
ASSOCIATED WITH HIGHER RISK OF
DEMENTIA AND EARLIER AGE OF
ONSET BUT THE MECHANISMS AND HOW
WE REDRESS NEED FURTHER STUDIES.
OUR COMMITTEE WANTED TO
REITERATE IMPORTANCE OF RISK
FACTORS OUTSIDE AN INDIVIDUAL'S
CONTROL AND RECOMMEND
IDENTIFYING AND TESTING
COMPENSATORY INTERVENTIONS TO
ADDRESS IMPACT OF RISK AND
EXPOSURES.
>> TWO MINUTES.
>> AS DISCUSSED TODAY ONE OF THE
BEST SUPPORTED POSITIVE
EXPOSURES FOR RISK REDUCTION IS
GREATER ACCESS TO EDUCATION,
PARTICULARLY IN EARLY LIFE.
AS SUCH AS A SOCIETY WE SHOULD
CONTINUE TO PRIORITIZE AND
EXPAND ACCESS FOR EVERYONE.
HOWEVER, WE KNOW LITTLE ABOUT
WHAT SPECIFIC ATTRIBUTES MATTER
MOST.
DEEPER ANALYSIS ALONG WITH
DECONVOLUTION WITH WHICH IT IS
ACCESSED CAN HELP GET TO
SPECIFICS.
WE CAN USE RESEARCH MODELS TO
DETERMINE WHAT ALTERATIONS TO
THE BRAIN AND FUNCTIONS ARE
DURABLY ACHIEVED WITH
ENRICHMENT.
TRANSLATION OF LEARNINGS TO
HUMANS WILL BE CHALLENGING BUT
IMPORTANT AS WE TRY TO OPTIMIZE
EDUCATION INTERVENTIONS.
WHILE WE PRIORITIZE IMPROVING
HIGH QUALITY EDUCATION FOR
EVERYONE WE SHOULD INITIATE
INTERVENTION STUDIES TO EVALUATE
IMPACT OF DIFFERENT EDUCATIONAL
MODELS AND TOOLS AT DIFFERENT
POINTS IN THE LIFESPAN ON
DEMENTIA RISK AND PROGRESSION.
AND THAT IS MY LAST SLIDE.
NOW IF WE COULD GET THE FULL
LIST PLEASE.
>> ALL THE RECOMMENDATIONS ARE
TOGETHER ON THE NEXT SLIDE.
>> THERE THEY ARE.
THANK YOU.
GROUP DISCUSSION?
>> I THANK THE PRESENTERS FOR
PRESENTING THESE
RECOMMENDATIONS.
I'LL INVITE THE MEMBERS OF THE
SUBCOMMITTEE TO FEEL FREE TO
COME ON CAMERA AND AS WE DISCUSS
THE -- OR TAKE QUESTIONS FROM
THE AUDIENCE.
IT'S FAIR TO START WITH BERNARD.
>> GREAT.
>> I'LL BE RIGHT WITH YOU.
>> OKAY.
LET ME START WITH THE QUESTION I
HAD AT THE END OF THE FIRST
SESSION, A LOT IS GOING TO APPLY
TO THE SECOND SESSION AS WELL.
THE FIRST QUESTION I HAVE, I
HAVE TWO IF I MAY, TWO STREAMS.
THE FIRST ONE IS I'M INTERESTED
IN WHAT OUTREACH STEPS ARE BEING
TAKEN TO DISSEMINATE THIS WORK
AND THESE RECOMMENDATIONS TO THE
LAY RESEARCH AND PATIENT VOICE
ADVOCATE COMMUNITY, SINCE WE'RE
ADVOCATING FOR MANY STUDIES,
BETTER RESEARCH, REPRESENTED
COMMUNITY VOICE WHAT STEPS
BEYOND PUBLICATION ON THE NIH
WEBSITE ARE BEING TAKEN TO MEET
ADVOCATE COMMUNITIES WHERE THEY
ARE?
>> I'M NOT SURE IN TERMS OF HOW
WIDESPREAD DISTRIBUTION OF THIS
VIDEO, FOR EXAMPLE, OR ANY OTHER
PUBLICATIONS BEYOND NIH THAT
CURRENTLY EXIST.
úBUE
WILLING TO OUTREACH TO OUR
COMMUNITIES AND HAPPY TO TALK TO
ANY GROUPS.
I DON'T KNOW, NEIL, IF YOU WOULD
LIKE TO JUMP IN AND EXPLAIN MORE
ABOUT HOW WE SPREAD THE WORD
ABOUT THE WORK AND OUR
RECOMMENDATIONS?
>> YEAH, WELL, I THINK I'LL PASS
THAT TO AMBER.
>> RECOMMENDATIONS ARE BEING
PRESENTED TODAY AS DRAFT
RECOMMENDATIONS.
AND THEY ARE RECEIVING PUBLIC
INPUT FROM EVERYONE HERE.
AND RECOMMENDATIONS WILL BE THEN
FINALIZED AFTER INTEGRATING THE
PUBLIC INPUT.
THIS WILL LEAD TO A REPORT THAT
THE SCIENTIFIC CHAIR OF THE
SUMMIT WILL PRESENT TO THE NINDS
ADVISORY COUNCIL AND THEY WILL
VOTE TO ACCEPT IT.
ONCE IT'S APPROVED, IT WILL
BECOME PART OF THE NATIONAL PLAN
IF APPROVED BY THE NAPA COUNCIL
AS WELL.
RECOMMENDATIONS BECOME INTEGRAL
INTO THE NATIONAL PLAN, THE
REPORT WILL BE AVAILABLE ON THE
WEBSITE AND THE RECOMMENDATIONS
WILL BE INTEGRATED INTO THE NIA
DATABASE FOR MILESTONE
IMPLEMENTATION UNDER THE
ALZHEIMER'S DISEASE AND RELATED
DEMENTIA.
WHAT ABOUT BEYOND THE WEBSITE?
>> RIGHT.
>> WE NEED HELP WITH THAT FOR
SURE, AND ALL OF YOU ARE THE
CHAMPIONS OF THE INFORMATION.
>> I THINK I COULD JUST ADD,
BERNARD, YOU MENTIONED
PUBLICATIONS.
I CAN'T SPEAK FOR EVERY STUDY
SPOKEN ABOUT TODAY BUT MANY
INCLUDING SOME OUR OWN HERE AT
RUSH IN ADDITION TO PUBLICATIONS
WE GO OUT IN THE COMMUNITIES AND
SHARE THE RESULTS OF WHAT WE'RE
DOING, NOT JUST THE STUDIES
THEMSELVES BUT ALL OF THE WEALTH
OF INFORMATION THAT OUR
PARTICIPANTS GIVE, THEIR TIME,
TREASURE, FEEDBACK, HOW WE'RE
DOING, AND THOSE ARE EVERYDAY
WAYS THAT HAPPENS BUT I THINK
AMBER'S ALSO TELLING YOU A BIT
ABOUT HOW THE NEXT SET OF
RECOMMENDATIONS MAY BE
DISSEMINATED.
HOPEFULLY THAT ANSWERS YOUR
QUESTION.
>> THERE'S BEEN SUCH VALUABLE
WORK HERE, I'D HATE TO SEE IT,
YOU KNOW, RESISTANCE, LACK OF
TRACTION, ET CETERA.
HAVE THIS FAIL TO GET OUT IN THE
COMMUNITY WHERE THIS CAN BECOME
PART OF THE DAY TO DAY AS
OPPOSED TO TRAPPED IN ACADEMIA
OR IN THE AGENCY.
I THINK THAT'S AN IMPORTANT
PIECE I'D LIKE TO TOSS FROM THE
ADVOCATE WORLD THAT WE COULD USE
MORE OF THIS, MORE INSIGHT, MORE
UNDERSTANDING.
I'D ALSO LIKE TO SEE IT
DISSEMINATED TO PATIENT
ACADEMIES, ET CETERA, WHERE THE
VOICES ARE BEING TRAINED BECAUSE
THEY ARE NOT LIKELY TO SEE THIS
UNLESS ONE OF YOU ENDS UP ON THE
BOARD WHERE THE CURRICULUM IS
BEING DEVELOPED.
I THINK THAT'S A BIG LOSS.
LET ME SWITCH TO THE LAST
QUESTION.
OH, I'M SORRY.
>> BERNARD, I'M WRITING IT DOWN.
SOMETHING THAT WE CAN CONTINUE
TO DISCUSS.
>> YOU CAN GET BACK AND I CAN
GIVE YOU A WEALTH ON THAT.
ALL RIGHT.
THE LAST ONE, OKAY.
THE LAST QUESTION WAS A NUMBER
OF TIMES I HEARD MENTIONED IN
THESE STUDIES OVERSAMPLING AND
I'D LIKE TO SUGGEST SOMETHING.
AND THAT IS THAT THE VOCABULARY
SWITCH AND THINK TIME BE PUT
INTO AS OPPOSED TO STRICTLY
REFERRING TO SOMETHING THAT'S
NOW TABOO, DIVERSITY AND
INCLUSION, WHAT STEPS ARE BEING
TAKEN TO ESTABLISH THRESHOLDS
FOR SCIENTIFIC ACCURACY AND
EFFICACY?
SO LOOKING AT THIS INSTEAD OF
SAYING OVERSAMPLING, LOOKING AT
WHAT TERMINOLOGY SHIFTS THE
THRESHOLD FOR GREATER ACCESS ON
SUBPOPULATIONS, I.E. YOUR STUDY
IS NOT ADEQUATE UNLESS YOU HAVE
MADE SURE YOU HAVE TAKEN HIGHLY
IMPACTED POPULATION AND INCLUDED
THAT IN YOUR ANALYSIS AND YOUR
RESULTS, AND DON'T TAKE THIS
COMMENT AS STRICTLY ACCOUNT,
IT'S OF MY COMMENT GOES BEYOND
THAT TO -- BEYOND QUANTITATE I
QUANTITATIVE
MEASURES BUT REQUIRES INCLUSION
OF THE TYPES OF STUDIES YOU'RE
CALLING FOR IN THESE
RECOMMENDATIONS TO BE A SUBSET
OR A PART OF THE ANALYSIS OF
FUTURE APPROVED GRANTS, REPORTS,
STUDIES, ET CETERA, SO IN OTHER
WORDS THEY HAVE DONE THE JOB OF
INCLUDING, YOU KNOW, VARIOUS
OTHER RESEARCH THAT WE'RE ASKING
FOR IN THEIR STUFF IN ORDER FOR
IT TO GET, YOU KNOW, MORE
RECOGNITION, MORE SCIENTIFIC
CERTIFICATION.
>> I THINK IT'S A GREAT QUESTION
BUT I DON'T DO THAT TYPE OF WORK
SO AISHA, MEG, MELISSA, ANY ONE
OF YOU?
>> I WASN'T SURE IF IT WAS A
QUESTION SO MUCH AS A
SUGGESTION.
I THOUGHT IT WAS AN EXCELLENT
SUGGESTION.
IS THAT WHAT IT WAS?
>> YEAH, I CHEATED.
[LAUGHTER]
>> I THINK YOU POSED IT AT A
QUESTION.
>> I SAID WHAT STEPS, BUT
OBVIOUSLY WHAT I MEANT WAS HOW
DO WE MAKE THIS WHAT YOU'RE
CALLING FOR EFFECTIVE?
>> RIGHT.
>> HOW DO WE GET PRACTICAL
IMPLEMENTATION?
AND THAT NEEDS TO BE THOUGHT
THROUGH OTHERWISE IT'S ON THE
SHELF.
WE NEED TO GET BEYOND NICE TO
HAVE, TO, HEY, THIS IS WHAT OUR
BEST MINDS ARE TELLING YOU, THIS
IS WHAT WE NEED.
>> OKAY.
TO ANSWER THAT QUESTION, I THINK
PART OF WHAT WE SUGGESTED STOP
LOOKING AT ONE-TO-ONE EXPOSURES
TO OUTCOME DISEASE ASSOCIATION
KNOWING THERE ARE JOINT
EXPOSURES PEOPLE EXPERIENCE ON A
REGULAR BASIS.
WHAT WE'RE SUGGESTING IS AMONGST
JOINT EXPOSURES WE NEED TO
IDENTIFY PRIORITY AREAS, ONCE WE
IDENTIFY THAT PRIORITY WE CAN
BETTER IMPLEMENT SOME KIND OF
MITIGATING STRATEGY BECAUSE YOU
CAN'T JUST GO A POLITICIAN AND
SAY EVERYTHING'S KILLING US.
YOU HAVE TO SAY THIS IS WHAT WE
NEED TO FOCUS ON FIRST AND THEN
WE NEED TO FOCUS, A STEP-WISE
PROCESS, I HOPE THROUGH THE
SUGGESTIONS THAT WE PROVIDED
TODAY WE'LL BE ABLE TO GET TO
THAT POINT.
I HOPE THAT ANSWERS YOUR
QUESTION.
>> IT DOES.
I APPLAUD ALL THE WORK YOU'VE
DOING.
I WANT TO SEE IT COME TO
FRUITION.
>> I WANT TO SEE IT COME TO
FRUITION TOO.
>> WE ALL WANT TO SEE IT COME TO
FRUITION.
DEFINITELY.
GREAT SUGGESTION, BERNARD.
THANK YOU SO MUCH.
>> THANKS VERY MUCH.
NEXT WE CAN GO TO PENNY DAX.
>> THANK YOU ALL.
THE WHOLE AREA OF THE EXPOSOME
IS JUST SO FOUNDATIONALLY
IMPORTANT FOR PUBLIC INVESTMENT
BECAUSE IT IS THE KIND OF THING
THAT CAN BE TRANSFORMATIONAL,
YET VERY DIFFICULT TO GET PUBLIC
OR RATHER PRIVATE INVESTMENT FOR
THESE TYPES OF INTERVENTIONS.
MY QUESTION FOR ALL OF YOU IS
ABOUT PARTICULARLY ON THE
INFRASTRUCTURE SIDE HOW ARE YOU
CONSIDERING DIFFERENCES OF
DIFFERENT TYPES OF DEMENTIA?
BECAUSE WHAT CAUSES OR WHAT
MIGHT BE A RISK FOR THE TAU
PATHOLOGY VERSUS TDP-43 OR
ALPHA-SYNUCLEIN, SOME PSP CASES
HAVE BEEN ASSOCIATED WITH
AGRICULTURAL PESTICIDES BUT
THAT'S NOT GLOBAL FOR ALL TYPES
OF DEMENTIA.
AND PARTICULARLY ON THE
INFRASTRUCTURE SIDE, IF YOU WANT
TO BE ABLE TO ASSESS THESE YOU
NEED VERY LARGE NUMBERS WHICH
MEANS YOU'RE PROBABLY GOING TO
GO TO THE MEDICAL RECORDS AND
CLAIMS DATABASES AND THEN YOU'RE
GOING TO BE HAVING MANY, MANY
TYPES OF DEMENTIA, PRETTY MUCH
ANYTHING THAT'S NOT ALZHEIMER'S,
IT'S INCONSISTENTLY DIAGNOSED.
MAYBE DEMENTIA NOT OTHERWISE
SPECIFIED, MAYBE IT'S CALLED
ALZHEIMER'S AND THERE'S A
CO-PATHOLOGY AND NOBODY KNOWS OR
MAYBE CALLED ALZHEIMER'S BECAUSE
IT'S MISDIAGNOSED.
WE LOOKED HEAVILY AND TALKED
ABOUT INFRASTRUCTURE NEEDED AND
RELIED HEAVILY ON WHAT'S KNOWN
ABOUT ALZHEIMER'S AND ALS,
BECAUSE PARTOLOGICALLY WE'RE AT
THOSE TWO INTERSECTIONS.
STEPPING BACK, THE QUESTION FOR
INFRASTRUCTURE IN PARTICULAR,
HOW ARE YOU THINKING NOT JUST
AD/ADRD COMBINED BUT HOW ARE YOU
THINKING ABOUT RESOLVING THE
INFRASTRUCTURE TO ANSWER THESE
QUESTIONS FOR THE DIFFERENT
PATHOLOGICAL CAUSES OF DEMENTIA?
>> I'M REMINDS OF MANY THINGS
THAT DR. DICKERSON TALKED ABOUT
IN RECOMMENDATION 3 IN TERMS OF
HARMONIZATION OF THE DATASETS TO
GET THOSE BIG NUMBERS THAT I
THINK ARE REQUIRED.
I'M ALSO REMINDED IN
RECOMMENDATION 2 THE IDEA OF
ACTUALLY TAPPING INTO MULTIPLE
EXPOSURES AND DOING A REALLY
KIND OF MULTIPLE EXPOSOME
MODELING SO THAT YOU CAN GET
GROUPS OF THESE TYPES OF FACTORS
THAT MAY BE INDICATIVE AND
THERE'S A WEALTH OF WORK WITH
MED CARB DATA TO UNDERSTAND IF
AND HOW YOU CAN TRUST DIAGNOSES
SO I THINK THAT PULLING IN THOSE
EXPERTS AS WELL CERTAINLY WOULD
BE NEEDED.
I WELCOME ADDITIONAL COMMENTS
FROM THE REST OF THE
SUBCOMMITTEE ON THIS GREAT
QUESTION.
THANK YOU.
>> I'M HOPING AS PART OF
RECOMMENDATION 3, SUBBULLET 3,
WE'LL BE ABLE TO DEVELOP
CONSENSUS ON THE PROPER
PROTOCOLS FOR IDENTIFYING
SUBTYPES OF DEMENTIAS SO THAT WE
CAN GET PAST, AS YOU SAID, ICD
CODES.
BUT ACTUALLY DO SOME ABSTRACTION
MEDICAL RECORD ABSTRACTION TO
SEE WHAT ARE SYMPTOMS SOMEONE
WAS DISPLAYING, WHAT BIOMARKERS
DO WE HAVE STORED THAT WE CAN
TEST TO DRILL DOWN ON THE
SPECIFIC SUBTYPES.
I HOPE ONCE WE DO THAT AND GET
SOME EXPOSURE DATA THEN WE CAN
PINPOINT THESE EXPOSURES MORE
ASSOCIATED WITH THESE TYPE OF
DEMENTIAS AND HOPEFULLY WE CAN
ANSWER THE QUESTION THAT YOU
POSED.
I BELIEVE THAT WOULD TAKE TIME
BUT MORE IMPORTANTLY WOULD
REQUIRE THE INFRASTRUCTURE THAT
WE'RE PROPOSING.
>> I'M ALSO GOING TO BE AN
OPTIMIST THAT WE WILL GET BETTER
DATA THAT SUGGESTS COGNITIVE
RESEARCH APPLIES ACROSS
DEMENTIAS.
AND TO THE DEGREE THAT WE CAN
FIND PROTECTIVE ELEMENTS LIKE
EDUCATION THEY ARE GOING TO
ACTUALLY PROMOTE COGNITIVE
RESEARCH THAT'S BENEFICIAL
REGARDLESS OF UNDERLYING
DIAGNOSIS, THAT'S NOT TO SAY WE
SHOULDN'T DRIVE BIOMARKERS AND
ANIMAL MODELS TO REALLY, REALLY
UNDERSTAND EACH SPECIFIC
BIOLOGICAL DRIVER OF DEMENTIA.
BUT THERE MAY BE SOME THINGS
THAT WE CAN DO THAT ARE GOING TO
BE HELPFUL ACROSS DEMENTIAS, AND
IN SOME WAYS PRIORITIZING THOSE
FIRST AND FOREMOST MIGHT BE THE
BEST AND EARLIER USE OF FUNDING
>> I THINK WE HAVE ADRIAN NEXT
WITH YOUR QUESTION PLEASE.
>> A MEMBER OF THE STEERING
COMMITTEE, CHAIR OF THE NAPA
COUNCIL.
GOING BACK TO BERNARD'S
QUESTION, HOW IS THIS GOING TO
BE DISSEMINATED, EVERY SUMMER
THE NAPA COUNCIL MAKES
RECOMMENDATIONS TO CONGRESS AND
FEDERAL AGENCIES, AND THAT WILL
BE A REPORT THAT IS GOING TO BE
PRESENTED ONLINE ALSO AND HAS A
VERY WIDE DISSEMINATION.
AND MANY OF US WHO ARE ON THERE
ALSO HIGHLIGHT THAT INFORMATION,
SO THE RECOMMENDATIONS THAT
YOU'RE HEARING FROM THE WHOLE
SUMMIT WILL BE LISTED IN A
PRESENTATION, NOT AS DETAILED AS
DURING THE SUMMIT BUT AT LEAST
LISTING ALL OF THE
RECOMMENDATIONS SO JUST TO
ASSURE YOU IT DOESN'T -- IT'S
NOT ONLY JUST THE ACADEMICS THAT
WILL BE AWARE OF IT.
THANK YOU.
>> THANK YOU FOR MAKING THAT
COMMENT.
REALLY APPRECIATE IT.
DO WE HAVE ANY OTHER QUESTIONS?
>> YES, I HAVE A QUESTION.
>> DALE, WE LOST YOUR AUDIO.
TRY TO UNMUTE AGAIN.
>> MY QUESTION HAS TO DO WITH
THE RELATIONSHIP NOW TO THE
TITLE OF ALL OF WHAT WE'VE BEEN
DOING THESE LAST THREE, FOUR
SESSIONS, PHASE, ALZHEIMER'S
DISEASE AND RELATED DEMENTIAS.
I'D LIKE TO ASK A QUESTION ABOUT
HOW ARE THEY RELATED NOW FROM
THE RESEARCH THAT WE'RE DOING?
I UNDERSTAND THAT THEY ARE
INVOLVED WITH RENEGADE PROTEINS
THAT ARE KIND OF CAUSING THE
PROBLEM.
OTHER THAN THAT, IF WE TAKE
ALZHEIMER'S AS THE BIGGIE, SO TO
SPEAK, AND UNDER THAT WE'VE GOT
LEWY BODY AND PARKINSON'S,
TEMPORAL AND SO FORTH, VASCULAR,
SO IT SAYS RELATED.
IS THAT KIND OF LIKE AN ANALOGY
OF RELATED IN A FAMILY LIKE WE
GOT COUSINS AND SO FORTH?
AND IF THAT'S THE CASE, THEY ARE
ALL DEALING WITH A PROTEIN
PROBLEM OF SOME SORT, AND ARE
THOSE PROTEINS AND THIS DISEASE
CONCENTRATED IN PARTICULAR AREAS
LIKE, FOR EXAMPLE, IN THE
HYPOTHALAMUS, YOU GOT ALSO THIS
NEWER ONE, I LEARNED ABOUT,
BEING LATE DEMENTIA WHICH COMES
ON, ROUND NUMBERS, AROUND 75?
ALL OF THOSE ARE RELATED.
WHAT IS IT ABOUT IT THAT MAKES
THEM RELATED?
>> DALE, THAT'S AN EXCELLENT
QUESTION.
I'LL JUMP IN HERE.
YOU HAVE HELPED US TO UNDERSTAND
THAT WHEN WE USE THE TERM
"RELATED DEMENTIAS" THAT CAN BE
MISPERCEIVED THAT THEY HAVE THE
SAME ETIOLOGY OR CAUSE.
THAT'S NOT HOW WE MEAN RELATED.
WHAT WE MEAN BY RELATED
DEMENTIAS IS THAT AS THOSE
DISEASES PROGRESS, TOWARD THEIR
END STAGE, HOW THEY IMPACT THE
HEALTH CARE SYSTEM, THAT
PERSON'S LIFE, THEIR ABILITY TO
FUNCTION INDEPENDENTLY, THEY ARE
WORKING WITH THEIR CAREGIVERS,
IS VERY SIMILAR.
SO WHEN WE'RE SAYING RELATED
DEMENTIAS WE'RE TALKING ABOUT
THE COGNITIVE -- PEOPLE WILL
HAVE DECLINE IN BRAIN FUNCTION.
WE'RE NOT SAYING THEY HAVE THE
SAME REASON FOR IT.
THANK YOU FOR BRINGING THAT UP.
>> OKAY.
THAT HELPS ME.
>> ONE MORE, DR. KOROSHETZ WOULD
LIKE TO COMMENT TOO.
ARE YOU ABLE TO USE YOUR AUDIO?
WE'RE HAVING A TECH -- GOT IT.
>> GAIL, CAN YOU HEAR ME?
>> YES, I CAN HEAR YOU.
>> THANKS, ADRIAN.
I WOULD THROW ON TOP OF THAT,
MAYBE WHEN THE LIST WAS FIRST
DETERMINED, PEOPLE DIDN'T
REALIZE THAT, YOU KNOW, AS YOU
MENTIONED ALZHEIMER'S IS THE BIG
ONE IN TERMS OF DIAGNOSES, BUT
IN FACT ALL THE
ALZHEIMER'S-RELATED DEMENTIA
PATHOLOGIES ARE INCLUDED IN MANY
PEOPLE WITH ALZHEIMER'S.
SO 30% OF PEOPLE HAVE DEFINITION
OF ALZHEIMER'S HAVE SYNUCLEIN,
40 OR 50% HAVE TDB 43, AND AS
GET OLDER 80 OR 90 ADVISORY HAVE
VASCULAR CHANGES.
THEY ARE RELATED, OCCUR IN
CONCERT WITH EACH OTHER, LARGE
PROPORTION OF PEOPLE WHO HAVE
DEMENTIA.
>> WELL, I LIKE TO LOOK AT
ANALOGIES TO HELP ME.
THINK OF AN ORCHESTRA, THEY ALL
PLAY, YOU GOT VIOLINS, CELLOS,
THE BRASS, BUT ALL DIFFERENT.
BUT THEY FALL TOGETHER, YOU GOT
A HARMONIZING PLEASURE TO LISTEN
TO.
THIS IS NOT A PLEASURE.
THIS IS A KICK IN THE HEAD
REALLY.
AND THERE IS NO CURE.
SO, WHEN WE'RE LOOKING AT THE
MEDICATIONS FOR THE PERSON ON
THE STREET WHICH I CONSIDER
MYSELF, YOU HEAR THIS DEMENTIA,
SO FORTH, IS PREDOMINANTLY WHAT
IT DOES IS DELAYS IT SOME.
AND THAT'S IT.
WHEN YOU GET A DIAGNOSIS OF
DEMENTIA, IT'S A DEATH SENTENCE.
YOU'RE GOING TO DIE FROM IT.
THAT'S ALL THERE IS TO IT.
NOW, WHEN YOU LOOK AT THE
RELATIONSHIP THEN OF THESE
DIFFERENT DEMENTIAS, THEY PRETTY
MUCH HAVE THE SAME EFFECT IN THE
LONG RUN, AS FAR AS THE
LONGEVITY OF THE AFFECTED
PERSON.
IS THAT CORRECT?
>> NOT EXACTLY.
I THINK THEY ARE A LITTLE
DIFFERENT.
IT DEPENDS.
>> I WOULDN'T SAY THAT IT GOES
FASTER OR SLOWER.
THE END RESULT IS THE SAME.
IT TAKES A DIFFERENT AMOUNT OF
TIME.
SOME PEOPLE EIGHT YEARS, SOME
PEOPLE 15 AND 20.
THAT'S RARE BUT NEVERTHELESS IT
DOES HAPPEN.
I'M JUST TRYING TO EXPLORE WHAT
YOU KNOW AND WHAT YOU HAVE FOUND
OUT AND WHAT YOU CAN HELP ME
WHEN I'M TALKING WITH FRIENDS
AND SO FORTH.
WE HAVE LUNCH.
WE TALK ABOUT THIS KIND OF
THING.
I CAN SAY, WELL, I JUST WAS AT
NIH, ZOOM MEETING AND SO FORTH,
WE TALKED ABOUT THIS.
HERE IS YOUR RESULT.
AND THAT'S IT IN A NUTSHELL
REALLY.
>> THANK YOU FOR THOSE COMMENTS,
DALE.
I THINK THIS CONVERSATION TODAY
IS CERTAINLY ABOUT WHERE THE
NEXT FIVE TO TEN YEARS SHOULD
GO.
AND THE TYPES OF RESEARCH THAT
SHOULD BE DONE TO MAYBE HELP FIX
MORE PARTS OF THAT ORCHESTRA SO
THAT IT WILL ULTIMATELY PLAY
TOGETHER SO ALL OF THESE
SUGGESTIONS AND ALL OF THESE
THOUGHTS ABOUT WHERE WE ARE AND
WHERE WE NEED TO BE INCLUDING
YOUR OWN ARE APPRECIATED.
SO THANK YOU.
>> I REALLY APPRECIATE YOU.
AND ALL YOUR COLLEAGUES.
WHAT YOU'RE DOING IS ABSOLUTELY
WONDERFUL.
AND TO HAVE SOMEBODY THAT IS
DWHEEG YOU DO IS A FOUNDATION OF
WHICH I FIND A LOT OF COMFORT
IN.
JUST KNOWING THERE ARE FOLKS
LIKE YOU DOING YOUR PIECES AND
PART TRYING TO FIGURE OUT WHAT
IN THE WORLD IS GOING ON HERE
AND HOW WE CAN BEST DEAL WITH
IT.
THANK YOU.
A GREAT BIG THANK YOU.
>> THANK YOU FOR YOUR QUESTIONS
AND YOUR PARTICIPATION AS WELL.
>> VERY WELL PUT, DALE.
>> IT MIGHT BE TIME TO OPEN IT
UP REALLY FOR INPUT ON ANYTHING
THAT YOU HEARD, SAW, THOUGHT
ABOUT FROM THESE THREE DAYS OF
THE SUMMIT.
IF AMBER AGREES, I WOULD
ENCOURAGE ANY OF THE COMMITTEE
MEMBERS WHO ARE PRESENT TODAY,
PLEASE DO TURN ON YOUR CAMERA
AND HELP FIELD WHAT I HOPE WILL
BE SOME ONGOING REALLY IMPORTANT
INPUT AND DISCUSSION.
SO IF YOU HAVE A COMMENT, AGAIN
IT CAN BE ON ANYTHING FROM THE
ENTIRE SUMMIT, ANY
RECOMMENDATIONS TODAY OR APRIL,
RAISE YOUR HAND.
>> THANK YOU, KATE.
I'M GOING TO GO FIRST TO RICHARD
BENSON, THE LEAD FOR THE
SESSION, THE FIRST SESSION OF
TODAY.
AND HE'S GOING TO SHARE A COUPLE
QUESTIONS WE RECEIVED ON THE
VIDEOCAST E-MAIL.
>> THANK YOU, AM BERG.
REALLY GREAT DISCUSSION FROM
BOTH PANELS TODAY.
THERE WERE TWO QUESTIONS PUT IN
THE VIDEOCAST FOR THE PREVIOUS
PANEL.
I'M GOING ASK IF YOU CAN TURN
YOUR CAMERAS ON AGAIN.
THE FIRST QUESTION, ACTUALLY IN
MULTIPLE PARTS, I'M GOING TO TRY
TO READ IT SLOWLY.
WHAT SPECIFICALLY IS BEING DONE
TO ENCOURAGE THE USE OF
BIOMARKER TESTING AS A LOW COST
NON-INVASIVE SCREENING TOOL, FOR
EXAMPLE IS GUIDANCE GIVEN TO
PRIMARY CARE PROVIDERS ON
APPROPRIATE USE OF TEST
INCLUDING AGE GUIDELINES AND WHO
IS GIVEN GUIDANCE VIA WHAT
CHANNELS, AND IS THE ALZHEIMER'S
ASSOCIATION TAKE AC -- TAKING A
LEAD, ENCOURAGING PARTICIPATION
AS APPROPRIATE?
I DON'T KNOW IF ANYONE FROM THE
PREVIOUS PANEL, IF YOU ALL ARE
STILL ON.
>> I'M HERE.
I'M NOT SURE HOW TO ANSWER THE
QUESTION.
THIS IS SUCH AN IMPORTANT
QUESTION.
BLOOD TESTS ARE GETTING TO
BECOME AVAILABLE, EVEN FDA
APPROVED.
AND SO WE NEED TO PROVIDE
ETHICAL, RESPONSIBLE, SOUND
GUIDANCE FOR PRIMARY CARE
PROVIDERS.
THIS IS ACTUALLY SOMETHING THAT
ONE OF THE SESSIONS FROM THE
FIRST DAY, MED TRANSLATIONS
DISCOVERIES INTO PRACTICE, THIS
IS PART OF ONE OF OUR
RECOMMENDATIONS TO THINK ABOUT
HOW TO -- RESEARCH THAT NEEDS TO
HAPPEN SO USE OF THESE
BIOMARKERS IN EVERYDAY CLINICAL
SETTINGS IS APPROPRIATE AND
ETHICAL.
AND SO I'M MAKING NOTE OF YOUR
COMMENT TO MAKE SURE WE'RE FULLY
ADDRESSING IT IN THAT SESSION.
>> FROM THE ALZHEIMER'S
ASSOCIATION, BY ALL MEANS, YES,
THE ALZHEIMER'S IS TAKING A LEAD
ON ENGAGING HEALTH SYSTEMS TO
EDUCATE PRIMARY CARE AND OTHER
PHYSICIANS AND DEVELOPING DR.
MARIA CARILLO AND HER TEAM
WORKING TO DEVELOP GUIDELINES
FOR BIOMARKER APPROPRIATE USE,
SO MORE TO COME BUT THE
ALZHEIMER'S ASSOCIATION
CERTAINLY IS COMMITTED TO THESE
AVENUES.
>> AMERICAN GERIATRIC SOCIETY
ALSO PROVIDED COMMENT ON CURRENT
USE OF BIOMARKERS, WE'RE EARLY
IN THE FIELD SO THERE'S CAUTION
THAT NEEDS TO OCCUR
REQUEST ARE CAN RESPECT TO
PRIMARY CARE.
THANK YOU.
>> THANK YOU.
THAT CREATED A THOROUGH RESPONSE
TO THE QUESTION.
THE NEXT QUESTION IS WHAT ARE
TOP PRIORITIES IN GENOMIC
RESEARCH, HEALTH DISPARITIES AND
POPULATION-SPECIFIC KNOWLEDGE,
IS IT JUST MORE DATA OR ARE
THERE PARTICULAR METHODOLOGIES
OR APPROACHES TO ACCELERATE
CLOSURE OF GAP IN TERMS OF
STATISTICAL POWER BETWEEN
WESTERN EUROPEAN WHITES AND
OTHER GENETIC ANCESTRY GROUPS
AND THIS AREA OF RESEARCH FOR
THE PREVIOUS PANEL.
>> I CAN ANSWER THE QUESTION.
I'M NOT A GENETICS EXPERT BUT
PASSIONATE ABOUT MY RESEARCH
GOES INTO THIS, THE AREAS OF
QUESTION.
AND SO FIRST OF ALL, SOMETHING I
SPOKE ABOUT WE DEFINITELY NEED
MORE REPRESENTATION OF THESE
GROUPS WITH GENETIC DATA.
THE COMMENT ABOUT POWER WAS
CRUCIAL AND IMPORTANT, SOMETHING
THAT IS DEFINITELY LACKING IF
YOU COMPARE, FOR EXAMPLE,
STUDIES OF EUROPEAN DESCENT
VERSUS OTHER GROUPS.
THERE'S THOUSANDS AND THOUSANDS
VERSUS ONLY A FEW THOUSAND WHEN
IT COMES TO UNDERREPRESENTED
GROUPS.
SO I THINK THIS GOES BACK TO
SOMETHING I SPOKE TO AND THAT
WAS MAKING SURE THAT WE'RE
INCLUDING THE COMMUNITY FROM THE
BEGINNING, RIGHT?
I THINK PEOPLE WILL BE MORE
LIKELY TO WANT TO PARTICIPATE IN
OUR RESEARCH IF WE'RE INVOLVING
THEM FROM THE BEGINNING AND
THAT'S WHERE A BIG PIECE OF
EDUCATION COMES IN TOO,
INFORMING WHY WE NEED YOUR HELP.
AND WHY WE NEED THEIR HELP.
YEAH, I'LL KEEP GOING.
A SHORT ANSWER.
>> I THINK THERE ARE SOME
TECHNICAL CHALLENGES,
STATISTICAL CHALLENGES ABOUT HOW
WE APPROPRIATELY DEAL WITH
SITUATIONS WHERE WE HAVE
UNBALANCED DATA AND TAKE
ADVANTAGE, BORROW INFORMATION
ACROSS GROUPS.
WHEN IT'S APPROPRIATE TO BORROW
INFORMATION AND NOT APPROPRIATE
TO BORROW INFORMATION SO I THINK
THERE ARE IN ADDITION TO GETTING
DATA THERE'S ALSO SOME
STATISTICAL QUESTIONS ABOUT HOW
WE BEST USE IT.
>> THANK YOU FOR THOSE
RESPONSES, THOSE ARE TWO
VIDEOCAST QUESTIONS SO I'LL HAND
IT BACK TO AMBER.
>> THANK YOU.
ONE HAND RAISED.
JOSEPH, ARE YOU ABLE TO UNMUTE
YOURSELF?
IF YOU ARE ABLE TO, LET US KNOW.
WE'LL TRY AGAIN.
LET'S GO TO ANN.
CAN YOU TRY TO USE YOUR
MICROPHONE AND CAMERA?
>> THANKS.
I'M ANNE MURRAY, IN MINNESOTA, A
MEMBER OF -- [ LOW AUDIO ]
,
>> YOUR AUDIO IS LOW, GET CLOSER
TO THE MICROPHONE OR SPEAK
LOUDER, IT'S HARD TO UNDERSTAND
YOU.
SORRY FOR THAT.
WE'LL TRY AGAIN.
>> I WANTED TO RAISE ALERT TO
THE ALZHEIMER'S -- [ LOW AUDIO ]
I DON'T KNOW IF IT'S BEEN
BROUGHT UP ALREADY BUT I'M A
MEMBER OF THAT LED BY JEFF
WILLIAMSON, WAKE FOREST,
MICHELLE NULTY, 15 OTHERS
MENTIONED BIOMARKER DATA TO THE
ADCC TO ESTIMATE EFFECTS OF
MORBIDITY AND ETHNICITY ON THE
DEMENTIA BIOMARKER LEVELS.
SO WE'RE HOPING THAT WILL HELP
PRIMARY CARE PHYSICIANS
INTERPRET, ONCE WE'VE ANALYZED
RESULTS AND DISTRIBUTED THEM.
>> THANK YOU SO MUCH, THAT'S
SUCH AN IMPORTANT INITIATIVE.
I'M GLAD THAT YOU HIGHLIGHTED
IT.
I DON'T THINK IT HAD BEEN
MENTIONED TODAY.
AGREED, AN IMPORTANT RESOURCE AS
WE TRY TO GUIDE BETTER CARE.
THAT'S NOTED.
SHOULD WE TRY JOSEPH THOMAS
AGAIN?
ANYONE LISTENING WHO HAS A
COMMENT OR QUESTION ABOUT
ANYTHING THAT YOU HEARD AT THE
SUMMIT, THIS IS YOUR CHANCE.
WE REALLY DO LISTEN VERY
CAREFULLY TO EVERY COMMENT
THAT'S GIVEN AND THINK ABOUT HOW
WE CAN USE THAT TO IMPROVE THE
RECOMMENDATIONS SO THIS IS YOUR
CHANCE FOR YOUR VOICE TO BE
HEARD.
>> WHILE THE MICROPHONE AND
CAMERA ARE ENABLED -- OKAY.
GIVE IT A TRY.
I BELIEVE IT'S ELLIS?
>> OKAY.
PERFECT.
THANK YOU SO MUCH.
A CALL FROM MGH.
I'M SO SORRY, I MISSED SOME OF
THE PARTS, MAYBE MY QUESTION HAS
BEEN ANSWERED ALREADY.
BUT I HAVE LISTENED FIRST TWO
DAYS WELL.
THERE ARE SOME DISCUSSIONS ABOUT
INTERACTIONS ESPECIALLY FOR
EXAMPLE THINGS ABOUT BLOOD
PRESSURE CONTROL, SLEEP HEALTH,
INTERVENTIONS ON THAT.
BUT I AM HAVING TROUBLE TO PUT
THIS IN EXPOSOME, SO HOW DO YOU
SAY THAT WHEN YOU SAY EXPOSOME,
ARE YOU GUYS ONLY TALKING ABOUT
GUT MICROBES OR ENVIRONMENTAL
TOXINS OR ARE YOU ALSO PUTTING
THIS FOR EXAMPLE SLEEP OR
EXERCISE BECAUSE THESE ARE KIND
OF MORE LIKE FEASIBLE TO DO
INTERVENTIONS, YOU KNOW,
MODIFIABLE, CAN YOU GUYS MAKE A
COMMENT ON THAT?
THANK YOU SO MUCH.
>> I'LL TAKE A SHOT AT THAT.
THANK YOU FOR YOUR QUESTION.
SO WHILE WE THINK ABOUT THE
EXPOSOME IT'S ALL COMPREHENSIVE.
IT'S MORE THAN JUST
ENVIRONMENTAL TOXINS OR AIR
POLLUTION.
WE'RE ALSO OF COURSE CONSIDERING
SLEEP AND CIRCADIAN RHYTHM
BECAUSE WHEN THESE FACTORS ARE
ALTERED, OR DISRUPTED, THEY HAVE
BEEN SHOWN TO CONTRIBUTE TO
COGNITIVE DECLINE.
SO, THE IDEA IS TO LOOK AT THE
OVERALL EXPOSOME, THROUGHOUT THE
LIFESPAN, AND TO ALSO LOOK AT
HOW SOME ACTIVITIES, PHYSICAL
ACTIVITIES, CHANGE IN DIET, CAN
HELP TO MAYBE SLOW THE
PROGRESSION OF A.D. AND RELATED
DEMENTIAS OR OTHER FACTORS THAT
MIGHT ACCELERATE COGNITIVE
DECLINE IN THE CONTEXT OF A.D.
SO ALL OF -- EVERYTHING THAT YOU
EXPERIENCE THAT CAN INFLUENCE
YOUR RESPONSE, IN REGARDS TO
MICROBIOME I GAVE EXAMPLE OF GUT
MICROBIOME BUT IT'S IMPORTANT TO
CONSIDER YOUR ENTIRE MICROBIOME
FLORA WHICH WOULD BE YOUR SKIN,
IN YOUR RESPIRATORY TRACT,
ANYTHING THAT MIGHT ASSOCIATE
WITH ACCELERATED PROGNOSIS OF
A.D. AND RELATED DEMENTIAS.
SO EVERYTHING THAT YOU'RE
EXPERIENCING THAT YOU'RE EXPOSED
TO CAN IMPACT YOUR GENETICS,
RIGHT?
BRING ABOUT MORE OF YOUR GENETIC
PREDISPOSITION.
I HOPE THAT HELPS CLARIFY WHAT
WE WERE TALKING ABOUT.
AND IT'S DIFFICULT TO MEASURE
THE EXPOSOME.
ESPECIALLY WHEN WE'RE NOT
EXACTLY SURE HOW TO --
ESPECIALLY IN THE CASE OF THE
HUMAN, HOW TO MEASURE THE
EXPOSOME.
WHAT FACTORS TO CONSIDER.
AND WHAT IS CORRELATED OR
ASSOCIATED OR BRINGS ABOUT
ALZHEIMER'S DISEASE.
>> LOOKS LIKE WE HAVE A COUPLE
HANDS RAISED.
WE'LL GO DALE AND THEN MOLLY
RICHARDS.
>> THIS QUESTION IS FOR WALTER.
DO YOU PLAN TO DO THIS
CONTINUATION OF WHAT WE'VE BEEN
THE LAST THREE DAYS, I'VE BEEN
IN ALL FIVE THAT YOU'VE HAD SO
FAR.
AND THE CONTINUATION, HOW THEY
BUILD ON ONE ANOTHER, IS REALLY
HELPFUL TO ME.
DO YOU HAVE THE FUNDING GOING
FORWARD IN ORDER TO DO IT AGAIN?
MAYBE THAT'S NOT A QUESTION YOU
CAN ANSWER RIGHT NOW BUT I'M
CURIOUS AND I SURE WOULD HOPE
THAT YOU CAN CONTINUE THIS INTO
THE FUTURE.
NEXT YEAR IS THE FUTURE I'M
TALKING ABOUT, THEN THE YEAR
AFTER THAT AND SO FORTH.
AS YOU FOLKS LEARN, AND PEOPLE
LIKE MYSELF LEARN FROM YOU.
>> HEY, DALE.
SO ADRIENNE MENTIONED WE REPORT
OUT TO THE ALZHEIMER'S ON THE
REGULAR BASIS.
THIS SUMMIT OCCURS EVERY THREE
YEARS, INTERSPERSED IS ANOTHER
SUMMIT.
I THINK THE NEXT IS ON
CAREGIVING WITH DEMENTIA,
PATIENTS WITH DEMENTIA, AND THEN
THE ONE AFTER THAT IS ON
ALZHEIMER'S DISEASE.
AND THEN WE WOULD COME BACK
AGAIN THREE YEARS LATER.
SO THAT'S HOW IT'S BEEN GOING ON
FOR -- WHAT NUMBER IS THIS?
THIS IS THE FIFTH, SO 15 YEARS.
ABOUT 15 YEARS.
WHETHER WE HAVE MONEY TO DO THE
RESEARCH IS NOT UP TO US.
IT'S UP TO YOUR REPRESENTATIVES
THAT YOU VOTED FOR.
>> I'LL DO MY PART ON THAT END.
AND MY MEMBERS OF THE SENATE AND
HOUSE ARE VERY SYMPATHETIC AND
SUPPORTIVE OF THIS.
I WISH IT WAS THE SAME ALL UP
AND DOWN, THE CATEGORY THAT
WE'RE DEALING WITH.
IT WOULD BE REALLY UNFORTUNATE
IF YOU LOST THE FUNDS FOR THIS.
WE WON'T GET INTO THE POLITICS.
ANYWAY, THANK YOU.
I WOULD HOPE THAT WE CAN
CONTINUE IT BECAUSE I'D LIKE TO
LEARN SOME MORE.
AS LONG AS I'M AROUND I WANT TO
BE ABLE TO LISTEN TO YOU GUYS
AND LEARN.
THANK YOU, WALTER.
>> YOU TOO, DALE.
WELCOME TO THE CLUB.
>> YES, THANK YOU, DALE.
MOLLY RICHARDS AND PENNY DACKS
PLEASE.
CAN YOU UNMUTE AND TURN YOUR
CAMERA ON?
>> OKAY, YES.
THIS IS A GREAT CONFERENCE.
I THANK YOU ALL FOR ALL THE HARD
WORK.
THIS IS MY FIRST TIME
PARTICIPATING AND ATTENDING
THIS.
MY HUSBAND BROUGHT SOMETHING TO
MY ATTENTION THIS MORNING THAT'S
AN EXECUTIVE ORDER 13950, I
DON'T KNOW IF YOU ALL LISTEN OR
HEARD ANYTHING ABOUT THIS.
AND IT'S A BILL, EXECUTIVE ORDER
THAT'S PUT OUT THERE TO
ELIMINATE ANYTHING, ANY
EDUCATION, ANYTHING THAT HAS TO
DO WITH DIVERSITY, ELIMINATED
FROM SCHOOLS, ELIMINATED IT FROM
FEDERAL ORGANIZATIONS, ET
CETERA, ET CETERA, ET CETERA.
I DON'T KNOW IF YOU ALL HEARD
ANYTHING ABOUT THIS.
WE'RE WRITING TO OUR CONGRESSMAN
AND DOING EVERYTHING WE CAN BUT
I DON'T KNOW IF YOU ALL HEARD
ABOUT IT.
>> OH, YEAH, ABSOLUTELY, YEAH, I
WOULD SAY A NUMBER OF OUR GRANTS
WERE CANCELED BECAUSE OF THAT
EXECUTIVE ORDER.
>> OKAY.
>> MOLLY, THANKS FOR YOUR HELP
ON THE COMMITTEE.
IT'S GREAT TO HEAR YOUR VOICE.
I WILL SAY I THINK, YOU KNOW, AS
SOMEBODY WHO HAS BEEN DOING
DISPARITIES RESEARCH FOR A LONG
TIME, I THINK IT'S A CHALLENGE
TO US TO BE CLEAR ABOUT EXACTLY
WHAT THE BARRIERS ARE AND WHY WE
NEED TO WORK TO OVERCOME THOSE
BARRIERS, AND REALLY EXPLAIN HOW
THOSE BARRIERS HARM EVERYONE IN
AMERICA.
THAT'S A -- PEOPLE IN THE
DISPARITIES COMMUNITY, WE HAVE A
TENDENCY TO USE SHORT HAND, SOME
IDEAS ARE FAMILIAR, WE DON'T
HAVE TO EXPLAIN ALL THE TIME,
BUT I THINK IT'S A MOMENT WE
NEED TO BE MORE CLEAR ABOUT WHAT
THE CHALLENGES ARE IN ORDER TO
MAKE SURE THAT FIRST OF ALL
WE'RE CONSISTENT, OBVIOUSLY WITH
LEGAL GUIDELINES, ALSO TO MAKE
SURE EVERYONE WHO IS WATCHING
OUR RESEARCH UNDERSTANDS WHY
IT'S SO IMPORTANT.
>> OKAY, THANK YOU.
>> WE'LL TAKE A MOMENT AND JUST
CELEBRATE, CELEBRATE ALL OF THE
RESEARCHERS, ALL OF THE NIH
STAFF, ALL OF THE ADVOCATES,
BECAUSE I THINK IF YOU STEP BACK
AND THINK ABOUT WHERE WERE WE 15
YEARS AGO, WHEN NAPA FIRST
LAUNCHED, THOSE OF US WITH
DEMENTIA IN OUR FAMILIES, IS IT
WHERE WE WANT IT TO BE?
NO.
BUT THOSE INVOLVED WITH THE
RESEARCH FACED A BIG BLACK BOX
NOBODY UNDERSTOOD.
WE'VE MADE LIGHT YEARS IN
PROGRESS UNDERSTANDING WHAT IS
CAUSING AND HOW WE CAN
INTERVENE.
THE FAMILIES HAVE MORE HOPE.
DO THEY HAVE THE TREATMENT THEY
NEED?
NO.
IS EVERYBODY GETTING DIAGNOSED?
NOT EVEN A LITTLE BIT.
BUT WE'RE SO MUCH CLOSER TO
THOSE TYPES OF TOOLS THAT CAN
IMPROVE PEOPLE'S LIVES AND IT'S
THANKS TO THE BIPARTISAN SUPPORT
FOR NAPA THAT WAS VISIONARY,
THANKS TO THE ADVOCATES, THANKS
TO THE RESEARCHERS WHO PUT SWEAT
EQUITY INTO MAKING PROGRESS.
THERE'S STRESS.
WE WANT SOLUTIONS BUT I WANTED
TO SAY THANK YOU.
>> THANK YOU SO MUCH FOR THOSE
REALLY KIND COMMENTS.
COULD NOT AGREE MORE.
>> THANK YOU TO THE NIH AND
NINDS FOR SUPPORTING THIS
RESEARCH.
THANK YOU SO MUCH.
>> WE HAVE ABOUT TEN MORE
MINUTES, IS THAT RIGHT?
NINE MORE MINUTES FOR OPEN
MICROPHONE TIME BEFORE WE WILL
MOVE TO THE SCIENTIFIC CHAIR'S
HIGHLIGHTS, KATE POSSIN, AND
SUMMARIES.
I'LL JUST WAIT.
IF NO ONE ELSE RAISES A HAND
WE'LL GO AHEAD WITH YOUR
SESSION, YOUR SLIDES.
>> VERY GOOD, I AGREE.
>> OKAY.
I'LL GIVE THE TEAM A MINUTE TO
GET THE SLIDES UP.
AWESOME.
>> GREAT.
SO, IT'S BEEN A REAL HONOR FOR
ME TO WORK ON THIS SUMMIT, AND
RIGHT NOW I'M GOING TO GIVE YOU
A SUMMARY OF SOME OF THE
CROSS-CUTTING THEMES FROM THE
THREE DAYS THAT WE'VE SPENT
TOGETHER.
NEXT SLIDE.
GREAT.
THANK YOU SO MUCH TO THOSE WHO
PARTICIPATED IN CREATING
RECOMMENDATIONS, GIVING INPUT
BEING USED TO SHAPE THESE
RECOMMENDATIONS.
RECOMMENDATIONS WE'VE PRESENTED
WERE DRAFTED BY NINE COMMITTEES
WITH 135 MEMBERS, MOSTLY
SCIENTISTS BUT ALSO EVERY
COMMITTEE INCLUDING PEOPLE WITH
LIVED EXPERIENCE AS WELL AS
PEOPLE WHO WORK IN GOVERNMENT
AND POLICY.
WE'VE PRESENTED THESE
RECOMMENDATIONS.
DRAFT RECOMMENDATIONS FOR YOUR
INPUT, HAD 11 LIVE PUBLIC INPUT
SESSIONS.
OVERALL THERE'S BEEN A HIGH
LEVEL OF PARTICIPATION AT THIS
SUMMIT.
WE HAD 2500 PEOPLE REGISTER FOR
THE SUMMIT.
AT THE APRIL MEETINGS, ACROSS
BOTH THE TEAMS MEETINGS AND
VIDEOCAST, WE HAD ABOUT A
THOUSAND PEOPLE AT ANY ONE TIME.
TODAY PARTICIPATION WAS A LITTLE
BIT LOWER, QUITE A BIT LOWER,
BUT I THINK STILL REALLY GOOD
INPUT TODAY.
TODAY WE HAD ABOUT 360 PEOPLE
ACROSS PLATFORMS.
IF WE INCLUDE OPPORTUNITY TO
VIEW ON DEMAND A LOT MORE PEOPLE
WILL VIEW THE SUMMIT.
FOR EXAMPLE, INCLUDING ON-DEMAND
VIEWS SO FAR ABOUT 1200 PEOPLE
HAVE SEEN DAY 1.
NEXT SLIDE.
I'LL GET TO SUMMARIZE SOME OF
THE THEMES NOW THAT WE HEARD
ABOUT ACROSS ALL OF THE
DIFFERENT SESSIONS.
SO ONE WE HEARD TALKED ABOUT BY
PENNY DACKS, THANK YOU, AND
THROUGHOUT, TREMENDOUS PROGRESS
IN ADRD SCIENCE, SINCE EVEN JUST
THE LAST SUMMIT THREE YEARS AGO.
THERE IS STRONG APPRECIATION
WE'VE HEARD FOR NIH'S INVESTMENT
AND FOR THE SCIENTIFIC PROGRESS
IN THE NASEM REPORT ON DAY 2,
SIGNIFICANT CONTINUED INVESTMENT
IN PRIORITY RESEARCH AREAS MUST
ADDRESS THE KNOWLEDGE GAPS.
SO THERE'S BEEN INCREDIBLE
PROGRESS BUT ALSO URGENCY TO
KEEP MOVING.
WE ARE SO MUCH, AS PENNY SAID,
SO MUCH CLOSER TO THE TOOLS THAT
WE NEED TO IMPROVE PEOPLE'S
LIVES.
WHEN CHOOSING RESEARCH
PRIORITIES PLEASE KEEP THE
POTENTIAL IMPACT ON PATIENTS AND
FAMILIES AT THE TOP OF MIND.
IN OTHER WORDS, WE NEED
PRIORITIZE DIAGNOSIS AND
TREATMENTS BUT ALSO PREVENTION.
DEMENTIA IS NOT POLITICAL.
ADVANCING RESEARCH HELPS ALL
AMERICANS.
NEXT SLIDE.
EMBRACE COMPLEXITY.
SEARCH THIS IS SOMETHING THAT
WAS MENTIONED IN BOTH OF THE
SESSIONS TODAY, AS WELL AS FIRST
TWO DAYS.
DIAGNOSIS OF ADRD IS NOT A
YES/NO SITUATION.
ADRD HAS MANY CAUSES.
AND MIXED DEMENTIA IS IN FACT
MORE COMMON THAN SINGLE ETIOLOGY
DEMENTIA.
ADRD IS CAUSED BY MULTI-FACETED
INTERPLAY OF BIOLOGICAL,
GENETIC, ENVIRONMENTAL, SOCIAL,
BEHAVIORAL ELEMENTS.
UNDERSTANDING THESE DISEASES WE
NEED TO INTEGRATE DIVERSE DATA
SOURCES, PROSPECTIVES AND
METHODS.
MOST PATIENTS HAVE MIX THE
ETIOLOGIES.
POST TBI SESSION HIGHLIGHTED
THIS AS POST TBI IS AN MED.
WE NEED TO IMPROVE MED CODING IN
ELECTRONIC HEALTH RECORD TO
IMPROVE CARE AND DATA
HARMONIZATION, ADVANCE AND APPLY
ARTIFICIAL INTELLIGENCE METHODS
TO EMBRACE THIS COMPLEXITY.
NEXT SLIDE.
WE NEED COLLABORATIVE APPROACHES
AT MULTIPLE LEVELS, MOVE TO
BROAD DATA SHARING, MENTIONED IN
EVERY SESSION OF THE SUMMIT.
WE NEED INEXPENSIVE BIOMARKERS
THAT CAN BE WIDELY COLLECTED.
LEVERAGE PRIVATE/PUBLIC
PARTNERSHIPS IN DATA
REPOSITORIES AND MOVE TO COMMON
DEFINITIONS AND NOMENCLATURE.
WE NEED TO ENGAGE A VARIETY OF
STAKEHOLDERS IN ALL STAGES OF
RESEARCH INCLUDING PEOPLE WITH
LIVED EXPERIENCE.
WE NEED TO CONTINUE VALUED
PARTNERSHIPS ACROSS FEDERAL
AGENCIES, PUBLIC/PRIVATE
PARTNERSHIPS HAVE BEEN CRUCIAL
FOR ADVANCING SCIENCE AND MUST
CONTINUE, AND NIH SUPPORT IS
CRITICAL.
MULL DISCIPLINARY RESEARCH TO
TACKLE COMPLEX PROBLEMS IS
NEEDED, AND IMPORTANCE OF
COLLABORATION AND CARE PATHWAYS
IN IMPROVING ACCESS TO CARE IS
ALSO ESSENTIAL.
NEXT SLIDE.
BIOMARKERS IS A HUGE THEME, AN
AREA WITH TREMENDOUS PROGRESS IN
THE LAST FEW YEARS.
THEY ARE KEY TO DISENTANGLING
HETEROGENEITY FOR EVERYTHING
FROM DISEASE MECHANISMS TO
CLINICAL TRIALS.
THEY ARE CRITICAL FOR DIAGNOSIS.
AN IMPORTANT EXAMPLE IS THAT
LATE IS ONLY DIAGNOSED AT
AUTOPSY.
WE NEED BETTER BIOMARKERS SO WE
CAN DIAGNOSE PEOPLE IN LIFE TO
MAKE FASTER PROGRESS IN OUR
RESEARCH.
AND PEOPLE WITH POST-TBI,
ANOTHER AREA WE NEED BETTER
BIOMARKERS TO DISENTANGLE WHAT'S
GOING ON FOR EACH PATIENT.
BIOMARKERS ARE CRITICAL FOR
MONITORING, ESPECIALLY FOR
THERAPEUTIC AGENTS, AND ACCESS
TO BIOMARKERS IS PART OF
SCALABLE DIAGNOSTIC PATHWAYS IS
NEEDED.
WE HEARD TODAY ABOUT A COMMENT A
NEED FOR NON-SPECIFIC BIOMARKES
AND LOW COST TOOLS TO DETERMINE
WHO NEEDS TO BE SEEN BY A
SPECIAL IST.
THE FIFTH THEME IS THE LAST
THEME I'M HIGHLIGHTING NOW,
FOSTER INCLUSIVE RESEARCH AND
ACCESS TO CARE.
DISPARITIES RESEARCH HAS BEEN
AND CONTINUES TO BE A HIGH
PRIORITY FOR NIH.
WE NEED TO STUDY THE POPULATIONS
MOST AT RISK FOR ADRD.
DISPARITIES ARE AN OPPORTUNITY
FOR PROGRESS.
AND SOLUTIONS ARE WITHIN OUR
REACH, WE HEARD FROM DR. GLYMOUR
TODAY.
WE NEED REQUIRE INCLUSION OF
POPULATIONS MOST AT RISK.
THANK YOU FOR THAT COMMENT
DURING AN OPEN SESSION.
WE NEED TO ADVANCE RESEARCH TO
HELP THE MOST VULNERABLE ACCESS
THE CARE THEY NEED, WE NEED GENE
OILIC AND MULTI-OMIC DATA THAT
ARE REPRESENTATIVE AND THINK
ABOUT HOW WE DISSEMINATE WORK TO
THE COMMUNITIES AFFECTED
INCLUDING ADVOCACY GROUPS.
DISSEMINATION OF THE
RECOMMENDATIONS FROM THE SUMMIT
AS WELL AS OUR SCIENTIFIC
PROGRESS.
NEXT SLIDE.
WE HAD TWO FINAL SESSIONS TODAY,
I'M GOING TO SUMMARIZE SOME
COMMENTS THAT I HEARD THAT I
KNOW THAT THE COMMITTEES ARE
ALREADY THINKING ABOUT HOW WE
CAN MAKE SURE THESE COMMENTS ARE
ADDRESSED IN OUR
RECOMMENDATIONS.
SO, ONE OVERARCHING SET OF
COMMENTS WAS THAT THE RESEARCH
IN THIS AREA NEEDS TO EMPHASIZE
BOTH PREVENTION AND TREATMENT,
AS WELL AS MEDICAL AND
NON-MEDICAL RESOURCES AND
APPROACHES.
WE NEED BETTER STRUCTURES AND
MECHANISMS TO SUPPORT EVERYONE
WHO WANTS TO DO GOOD SCIENCE ON
DEMENTIA.
WE HEARD AN IMPORTANT EXPERIENCE
OF SOMEBODY WHO IS TRYING TO
ADVANCE RESEARCH BUT LIVING IN A
RURAL AREA, IDENTIFIES AS BEING
ASIAN AND DON'T FEEL LIKE PRIOR
STRUCTURES AND MECHANISMS WERE
ADEQUATE TO SUPPORT SOMEONE LIKE
HER.
WE WANT TO SUPPORT EVERYONE
INTERESTED IN DOING GOOD SCIENCE
ON ADRD.
UNDERSTAND MULTIPLE ETIOLOGIES
AND HOW THEY VARY ACROSS
DIFFERENT POPULATIONS WAS
ANOTHER COMMENT.
AND THEN AGAIN DATA
HARMONIZATION IS CRUCIAL.
WE NEED TO ADDRESS TECHNICAL BUT
SOLVABLE PROBLEMS ON DATA
HARMONIZATION, AND SESSION 9, ON
THE EXPOSOME, WE GOT A GOOD
COMMENT ABOUT HOW WE NEED TO
MAKE SURE THAT OUR
RECOMMENDATIONS ON THE EXPOSOME
CONSIDER DIFFERENT CAUSES OF
DEMENTIA BECAUSE THERE'S
DIFFERENT RISK FACTORS FOR
DIFFERENT CAUSES OF DEMENTIA SO
THERE ARE SOME RESEARCH
QUESTIONS WHERE IT'S APPROPRIATE
TO LUMP DEMENTIAS TOGETHER AND
OTHERS WHERE WE NEED TO TEASE
THEM APART BUT IN ORDER TO
UNDERSTAND THESE RELATIONSHIPS
WE NEED LARGE NUMBERS, A LOT OF
POWER, AND SO THAT DRIVES
SCIENTISTS TO USE DATASETS LIKE
CLAIMS WHICH UNFORTUNATELY ARE
AFFECTED BY INACCURACIES IN
DIAGNOSIS.
SO REALLY SOLUTIONS DISCUSSED
THAT WE NEED TO ADVANCE INCLUDE
DATASET HARMONIZATION, MULTIPLE
EXPOSOME MODELING THAT MAY BE
MORE INDICATIVE FOR CERTAIN
CAUSES OF DEMENTIA, AND ALSO OF
COURSE AGAIN WE NEED TO ALSO DO
RESEARCH THAT PRIORITIZE FACTORS
COMMON ACROSS DEMENTIAS WHERE
THERE MAY BE OPPORTUNITY FOR
HIGH IMPACT.
AND LAST SLIDE, I WANT TO THANK
EVERYBODY IN CLOSING WHO
PARTICIPATED IN DRAFTING THESE
RECOMMENDATIONS AND WHO TOOK THE
TIME TO LISTEN TO PART OR ALL OF
THE SUMMIT AND PROVIDE USUAL
INPUT.
THIS IS WHY WE ARE HERE.
I'M SO HONORED TO THINK ABOUT
ALL OF THE INPUT FROM MEMBERS OF
OUR COMMUNITY HERE TODAY AND AT
THE PRIOR TWO DAYS, AND TO WORK
WITH THE REST OF THE COMMITTEE
LEADS TO NOW REALLY BE
THOUGHTFUL ABOUT INCORPORATING
THAT INPUT AS WE FINALIZE
RECOMMENDATIONS THAT WILL BE
PRESENTED TO NIH COUNCIL.
I WANT TO THANK AGAIN OUR
AMAZING COLLEAGUES AT NIH,
NINDS, AND NIA WHO HAVE LED THIS
PROCESS TO DRAFT RECOMMENDATIONS
AND THAT CONTINUE TO WORK SO
HARD TO HELP SCIENTISTS TO KEEP
THIS WORK MOVING FORWARD.
SO THANK YOU ALL.
AND WITH THIS I WILL CLOSE THE
SUMMIT TODAY.
[END OF PROGRAM]