I WOULD LIKE TO WELCOME YOU ALL
TO THIS VIRTUAL WORKSHOP CALLED
BUILDING A DIVERSE COMMUNITY FOR
THE DOWN SYNDROME RESEARCH.
BEFORE WE GET STARTED ON THIS
EXCITING LINE UP OF FABULOUS
SPEAKERS I WOULD LIKE TO GET THE
IMPORTANT TASKS OF SHARING
IMPORTANT LOGISTICS FOR THIS
WORKSHOP.
WE HAVE SCHEDULED THREE SESSIONS
FOR EACH DAYS START WITH A
WELCOME REMARKS FROM NIH'S
LEADERSHIP TEAM DR. COURTNEY
AKLIN.
SESSION TWO WILL BE A FAMILY
DISCUSSION.
AND THE LAST SESSION WILL BE
DISCUSSING HEALTH DISPARITIES IN
DOWN SYNDROME ACROSS THE
LIFE-SPAN WITH A FOCUS ON
POLICIES, CONDITIONS AND CONSENT
ISSUES.
EACH SESSION MODERATOR WILL
INTRODUCE THE SPEAKERS AND WE'LL
HAVE A DISCUSSION AT THE END OF
THE SESSION.
WE HAVE BUILT IN 15 MINUTES OF
COFFEE BREAKS IN BETWEEN THE
SESSIONS AS WELL.
THE SECOND DAY WILL START
TOMORROW AGAIN AT NOON EASTERN
TIME.
WE'VE PLANNED ANOTHER EXCITING
HALF OF A DAY FOCUSED ON
LEARNING, HOW TO DIVERSIFY THE
RESEARCH TEAMS AND NOT TO ALIEN
YET THERE WILL BE BREAKS.
SOME GENERAL REMINDERS.
THIS MEETING IS BEING RECORDED
AND A SUMMARY WILL BE POSTED ON
THE WEBSITE.
THE ZOOM SESSION FEATURES
HOPEFULLY AFTER TWO YEARS OF
LIVING IN THIS VIRTUAL WORLD WE
HAVE BECOME EXPERT IN MUTING AND
UNMUTING BUT JUST A REMINDER
PLEASE UNMUTE WHEN YOU'RE READY
TO ASK A QUESTION AND ALSO FOR
THE SPEAKERS WHEN PRESENTING
PLEASE TURN ON YOUR VIDEOS AND
ALL OTHERS CAN USE THE CHAT
FUNCTION TO ASK QUESTIONS AS
WELL.
AND VERY IMPORTANT FOR THIS
SESSION WE ARE FORTUNATE TO BE
PROVIDING LIVE SIMULTANEOUS
SPANISH INTERPRETATION.
SO FOR THE SPEAKERS PLEASE SPEAK
A LITTLE SLOWER THAN USUAL.
IF YOU WISH TO LISTEN TO THE
AUDIO IN ENGLISH PLEASE SELECT
THE GLOBE AT THE BOTTOM OF YOUR
ZOOM WINDOW WHERE IT SAYS
INTERPRETATION AND SELECT
ENGLISH.
THERE IS ALSO LIFE TRANSCRIPT
FOR NONSPANISH REQUESTS.
[ SPEAKING SPANISH ]
>> THANK YOU.
AND SO HERE IS THE WEBSITE WHICH
WILL HAVE THE RECORDINGS POSTED
OF THE LISTENING SESSIONS THAT
WE CONDUCTED IN MAY OF THIS YEAR
WHICH HAS INFORMED OUR WORKSHOP
AND THE EXECUTIVE SUMMARY OF
THIS MEETING AS WELL, THE VIDEO
CAST RECORDINGS WILL BE POSTED
ON THAT WEBSITE.
AND JUST FOR EVERYONE'S
POSITIONS THE DS CONNECT WEBSITE
IS ALSO LISTED HERE.
SO THE DOWN SYNDROME WORKING
GROUP COULD NOT HAVE
ACCOMPLISHED WHAT WE'VE BEEN
DOUG FOR SEVEN YEARS WITHOUT THE
HELP AND SUPPORT OF THE PARTNERS
INCLUDING 14 NIH INSTITUTE
PARTNERS.
ALSO A SHOUT OUT TO THE INCLUDE
LEADERSHIP TEAMS OF DR. TABAK,
BIANCHI AND GIBBONS WHO KEEP US
MOTIVATED AND INSPIRED.
AND A HUGE SHOUT OUT TO THE
PLANNING COMMITTEE ESPECIALLY
MS. LINDA GARCIA.
AND DR. LAURA LONG -- AND ALL OF
THE SPEAKERS WHO WERE PATIENT
WITH ALL OF OUR E-MAILS AND
REQUESTS.
SO WITHOUT FURTHER ADO LET ME
INTRODUCE DR. COURTNEY AKLIN WHO
IS THE ACTING ASSOCIATE DEPUTY
DIRECTOR.
DR. AKLIN SERVES AS THE SENIOR
ADVISOR WITHIN THE IMMEDIATE
OFFICE OF THE DIRECTOR WHERE SHE
IS RESPONSIBLE FOR ADVISING ON A
BROAD AREA OF CONFLICTS AND
SENSITIVE ISSUES.
PRIOR TO HER CURRENT POSITION
DR. AKLIN SERVED IN A KEY
LEADERSHIP ROLE AS THE CHIEF OF
STAFF AT THE NATIONAL INSTITUTE
ON MINORITY HEALTH AND HEALTH
DISPARITY.
WELCOME, DR. AKLIN.
>> THANK YOU SO MUCH SUJATA FOR
THAT INTRODUCTION AND WELCOME TO
THE NIH INCLUDE WORKSHOP.
BUILDING A DIVERSE COMMUNITY FOR
DOWN SYNDROME RESEARCH.
AS SUJATA MENTION SAID I'M
DR. COURTNEY AKLIN AND A COCHAIR
FOR THE INVESTIGATION OF
CONDITIONS ACROSS THE LIFE-SPAN
TO UNDERSTAND THE SYNDROME.
BUT ON BEHALF OF MY COCHAIRS
DR. BIANCHI AND DR. GARY GIBBONS
AND MYSELF WE ARE THRILLED TO BE
OPENING THIS TWO-DAY WORKSHOP ON
A VERY IMPORTANT TOPIC.
AS YOU MAY HAVE RECOGNIZED AS
YOU WERE REGISTERING WE HAVE
OVER 200 REGISTERED PARTICIPANTS
INCLUDING SELF-ADVOCATES
FAMILIES, RESEARCHERS, TRAINEES,
MEMBERS OF DOWN SYNDROME
ORGANIZATIONS, HEALTH CARE AND
SERVICE PROVIDERS, EXPERTS IN
DIVERSITY AND INCLUSION AND
PROGRAM STAFF FROM ACROSS ALL OF
NIH.
INCLUDE WAS LAUNCHED IN 2018 IN
RESPONSE TO A CONGRESSIONAL
DIRECTIVE CALLING FOR A NEW
TRANS RESEARCH INITIATIVE FOR
PEOPLE WITH DOWN SYNDROME.
NIH HAS INVESTED MORE THAN
$183 MILLION IN OVER 200
PROJECTS AND A WIDE VARIETY OF
BASIC SCIENCE AND CLINICAL
TOPICS.
INCLUDE IS NOW COMPLETING ITS
FIFTH YEAR AND FOCUSING ON
EXPANDING THE INCLUSION OF
INDIVIDUALS WITH DOWN SYNDROME.
FROM DIVERSE BACKGROUNDS AND IN
ORDER TO UNDERSTAND AND
ELIMINATE HEALTH DISPARITIES AND
ADVANCE HEALTH.
TO ACHIEVE THESE GOALS WE NEED
TO THINK BROADLY AND ENCOURAGE
EVERYONE TO BE INNOVATIVE ABOUT
THE WAYS TO INCLUDE UNDERSERVED
POPULATIONS IN OUR RESEARCH
ACTIVITIES.
WE AIM TO ENGAGED THE VOICES OF
SELF-ADVOCATES AND FAMILY
MEMBERS AND WITH THE COMMUNITY
TO STRENGTHEN OUR DIVERSITY AND
INCLUSION AND ACCESSIBILITY
PLANS.
THIS WORKSHOP WHICH IS BUILDING
OFF OF OUR LISTENING SESSIONS
FROM MAY IS AN EXAMPLE OF OUR
EFFORTS TO ENGAGED THE COMMUNITY
TO LISTEN.
TO LEARN AND TO TAKE ACTION.
OVER THE NEXT TWO DAYS WE WILL
LISTEN AND LEARN FROM
SELF-ADVOCATES, FAMILIES AND
RESEARCHERS ABOUT HOW TO
EFFECTIVELY ENGAGE UNDERSERVED
COMMUNITIES AND THE ACTIVITIES
AND WHY THIS IS SO CRITICAL TO
OUR RESEARCH MOVING FORWARD.
ON BEHALF OF THE NIH AND INCLUDE
LEADERSHIP THANK YOU TO ALL OF
OUR ATTE ATTENDEES AND TO ADVAG
THE SCIENCE IN THIS SPACE.
YOUR DEDICATION TO INCLUDE IS
MAKING A DIFFERENCE IN THE LIVES
OF PEOPLE WITH DOWN SYNDROME AND
THEIR FAMILIES.
AND WITH THAT I WILL HAND IT
BACK OVER TO DR. SUJATA OUR
PROGRAM DIRECTOR AT NICHD AND
THANK YOU ALL FOR BEING HERE.
>> THANK YOU SO MUCH DR. AKLIN.
APPRECIATE THE WELCOMING REMARKS
AND YOU MENTIONED A LOT OF
THINGS THAT IN MY SLIDES SO I
WILL BE ABLE TO UTILIZE THAT TO
GIVE BACK SOME OF THE TIME TO
OTHER SPEAKERS.
SO I ALREADY DISCUSSED THE
SESSIONS SO TODAY'S SESSION
FOLLOWING MY OVERVIEW WE WILL
HAVE THREE SPEAKERS FOR THIS
SESSION ONE WHERE MS. GARCIA
WILL PROVIDE SOME READ OF THE
LISTENING SESSION, DR. ARUNA
NATARAJAN AND DR. MALIHA ILIAS
WILL BE TELLING US ABOUT THE
COMMUNITY ENGAGEMENT.
THIS IS JUST THE OUTLINE OF MY
TALK.
SO I WILL BE DISCUSSING WHY
WE'RE GATHERED HERE IN THIS
VIRTUAL WORLD TO LEARN ABOUT
BUILDING A DIVERSE DOWN SYNDROME
RESEARCH COMMUNITY.
FOR THOSE OF US WHO LIVE AND
BREATHE AT NIH WE'RE PROUD TO BE
PART OF THE WORLD'S LARGEST
FUNDER OF BIOMEDICAL RESEARCH.
NIH IS BASED IN BETHESDA,
MARYLAND AND 90% OF THE FUNDS
GOES BACK TO THE UNIVERSITY
RESEARCH INSTITUTIONS.
I DO NOT NEED TO DEFINE DOWN
SYNDROME FOR THIS AUDIENCE' EACH
YEAR 6,000 BABIES ARE BORN IN
THE UNITED STATES WITH DOWN
SYNDROME AND THEY AND THEIR
FAMILIES FACE SIGNIFICANT HEALTH
CHALLENGES THAT CAN BE OVERCOME
WITH APPROPRIATE SUPPORT AND
TREATMENT.
NIH INVEST IN RESEARCH THAT WILL
ADVANCE OUR UNDERSTANDING OF THE
NATURAL HISTORY OF DOWN SYNDROME
AND TREATMENTS THAT MAY IMPROVE
THE QUALITY OF LIFE FOR THE
PERSON WITH DOWN SYNDROME AND
THEIR FAMILIES.
INVESTMENT IN MEDICAL RESEARCH
HAS LED TO DRAMATIC INCREASE OF
THE LIFE-SPAN OF INDIVIDUALS
LIVING WITH DOWN SYNDROME.
FROM NINE YEARS BACK IN THE
1950s TO PEOPLE NOW LIVING
OVER 50-60 YEARS OF AGE.
THIS INCREASE IN LIFE-SPAN AND
WE FOCUS ON THE GRAPH ON THE
LEFT OF THE SCREEN REALLY
FOLLOWED THE AMERICANA ACADEMY
OF PEDIATRICS RECOMMENDATION OF
CARDIAC SCREENING FOR ALL
INFANTS WITH DOWN SYNDROME IN
THE EARLY 1990s.
TODAY MORE INDIVIDUALS ARE
THRIVING AND LIVING LONGER WHICH
IS GREAT AND THE GRAPH ON THE
RIGHT SHOWS THE AGE
DISTRIBUTIONS SO WE CAN SEE A
LOT OF INDIVIDUALS OVER THE AGE
OF 30 BUT WITH AGING COMES
HEALTH RELATED ISSUES AND DID I
-- DEMINT YA CAN BE A LEADING
CAUSE OF DEATH.
* WHEN WE SEE THE DATA FOR OTHER
RACES THE MEDIAN AGE OF LIFE
EXPECTANCY FOR PEOPLE WITH DOWN
SYNDROME FROM OTHER RACES ARE
MUCH LOWER THAN THEIR WIDE
COUNTERPARTS.
ONE OF THE THINGS THAT WE NEED
TO UNDERSTAND IS WHETHER THERE
ARE HEALTH DISPARITIES FOR THE
CONDITIONS THAT MIGHT EFFECT THE
OVER-ALL HEALTH OF THE PERSON
WITH DOWN SYNDROME.
WE WILL LEARN TODAY AND HEAR
MORE FROM DR. MARISHKA BROWN IN
THE THIRD SESSION.
WE KNOW THAT SLEEP HEALTH IS NOT
EQUITABLY DISTRIBUTED.
ADVERSE SLEEP HEALTH IS HEALTH
IS ASSOCIATED WITH POOR HEALTH
OUTCOMES AND PREMATURE
MORTALITY.
SLEEP RESEARCH HAS SHOWN THAT
PEOPLE FROM RACIAL AND ETHNIC
MINORITIES REPORT SHORTER SLEEP
DURATION WHICH INFLUENCES MANY
DOMAINS INCLUDING OVER-ALL
HEALTH OF THE PERSON.
I WILL SWITCH GEARS AND DISCUSS
INCLUDE IT STANDS FOR
INVESTIGATION OF CO-AUTHORING
CONDITIONS ACROSS THE LIFE-SPAN.
SO AS DR. AKLIN MENTIONED THIS
WAS LAUNCHED IN 2018 AND ONE OF
THE THINGS THAT CONGRESS HAS
GIVEN US DIRECTIVES FOR IS TO
ENGAGE WITH THOSE WITH DOWN
SYNDROME AND THEIR FAMILIES OF
DIVERSE BACKGROUNDS AND INCREASE
THE NUMBER OF INVESTIGATORS AND
TRAINEES STUDYING DOWN SYNDROME.
JUST TO SET THE MEETING NIH
DEFINES HEALTH DESPA DISPARITY
DEFINITION -- UNDERSERVED RURAL
COMMUNITIES AND SEXUAL AND
GENDER MINORITIES.
THE INCLUDE PROJECT HAS BEEN
DIVIDED INTO THREE.
AND BUILDING A DIVERSE DOWN
SYNDROME RESEARCH COMMUNITY
ADDRESSES ALL THREE.
BUILD DIVERSE RESEARCH TEAMS,
RESEARCHERS STUDYING BASIC
SCIENCE.
ASSEMBLING A DIVERSE A INCLUSIVE
TRIALS.
AS DR. AKLIN MENTIONED THAT NIH
HAS SPENT OVER $100 MILLION
WHICH HAS ALLOWED US TO FUND
SOME NEW PROJECTS FROM NEW EARLY
AND ESTABLISHED INVESTIGATORS.
IT IS IMPRESSIVE INCLUDING
SEVERAL CLINICAL TRIALS.
THIS IS THE GOOD NEWS.
THE NOT SO GOOD NEWS IS LOOKING
AT THE PRELIMINARY DEMOGRAPHIC
DATA SHOWN HERE FOR THREE
CLINICAL TRIALS.
WE HAVE LOTS TO ACHIEVE AND
INCLUDING DIVERSE PARTICIPATION.
THE STATUS QUO NEEDS TO CHANGE.
THE CALL TO ACTION FOR YOU IS TO
TAKE PART IN DS CONNECT.
DIRECTLY FROM FAMILIES.
IT IS ALSO AVAILABLE IN SPANISH
AND HELPS FAMILY CONNECT WITH
APPROVED RESEARCHERS AND TAKE
PART IN STUDIES.
THE MAP SHOWS THAT WE HAVE
PARTICIPANTS FROM ALL OVER THE
U.S. ALTHOUGH OUTREACH IS STILL
NEEDED IN RURAL COMMUNITIES.
WE HAVE SEVERAL HUNDRED
PARTICIPANTS FROM OUTSIDE THE
U.S.
OUR GOAL IS TO CONNECT BROADLY
TO MAKE THIS RESOURCE HELPFUL
FOR FAMILIES AND PARTNER WITH
LOCAL AND NATIONAL CHAPTERS TO
LISTEN AND LEARN FROM
UNDERSERVED GROUPS.
WE ARE ABLE TO HELP INCLUDE
FUNDED RESEARCH RECRUIT FOR THE
STUDIES USING DS CONNECT.
THE REGISTRY HELPS IN RECRUITING
STUDIES THAT WE ARE FUNDING.
THAT IS THE GOOD NEWS THAT WE
CAN LEVERAGE TO NIH PROGRAMS.
THE NOT SO GOOD NEWS, THE
DEMOGRAPHIC DATA.
IT IS IMPORTANT THAT WE INCREASE
DIVERSE PARTICIPATION SINCE
RESEARCHERS ARE USING THIS TO
RECRUIT FOR THEIR STUDIES.
IT IS IMPORTANT TO INCLUDE A
LARGE SAMPLE POPULATION AND THIS
IS A SLIDE FROM THE INCLUDE DATA
COORDINATING CENTER WHICH SHOWS
NOT INCLUDING THE LARGER
POPULATION MAY LEAD TO THE MYTH
THAT THERE ARE NO FIGURES IN THE
POPULATION.
OUR GOAL IS TO UNDERSTAND THE
NATURAL HISTORY OF DOWN SYNDROME
AND HOW CONDITIONS MIGHT AFFECT
THE HEALTH AND LIFE-SPAN OF
INDIVIDUALS BY BEING INCLUSIVE
WE WILL BE ABLE TO UNDERSTAND
MORE ABOUT DOWN SYNDROME FOR ALL
UNDER REPRESENTED GROUPS.
I WOULD LIKE TO END MY
PRESENTATION BY SHARING -- THE
DIVERSITY, EQUITY, INCLUSION AND
ACCESS.
OUR GOAL -- WHERE PROPS ARE
TAKEN OFF AND BARRIERS ARE
KNOCKED DOWN AND EVERYONE IS
INCLUDED IN THE GAME.
WE AT NIH LOVE OUR ACRONYMS AND
UNITE IS ANOTHER ONE.
TOMORROW YOU WILL HEAR FROM
DR. CHRISTIE LAY ABOUT THE
ACTIVITIES FROM THE OFFICE WHICH
IS THE CHIEF OFFICER OF
SCIENTIFIC WORK ON DIVERSITY AND
HOW THEY ARE ADDRESSING THE E IN
UNITE INITIATIVE.
IF THERE IS ONE TAKE AWAY FROM
MY PRESENTATION IT IS TO GET
MORE PEOPLE AWARE OF THE ON-LINE
REGISTRY DS CONNECT SO WE CAN
REACH OUR GOAL OF 10,000
PARTICIPANTS AND IMPROVE THE
DEMOGRAPHIC PIE CHART ALONG THE
WAY.
NOW I WOULD LIKE TO INTRODUCE
THE NEXT SPEAKER MS. LINDA
GARCIA WHO IS THE COMMUNICATIONS
AND OUTREACH COORDINATOR FOR THE
INCLUDE PROJECT AND THE DS
CONNECT REGISTRY AT NIH.
SHE IS AN ACCOMPLISHED
COMMUNICATION PROFESSIONAL WITH
OVER 20 YEARS OF EXPERIENCE IN
MARKETING.
BUT HER TRUE PASSION LIES IN
WORKING WITH MINORITY
POPULATION.
SHE ALSO IS THE CO-LEAD FOR THIS
WORKSHOP AND I'M FORTUNATE TO
HAVE HER ON OUR TEAM.
>> GOOD AFTERNOON AND WELCOME
EVERYONE.
LET ME WAIT FOR MY SLIDES TO BE
ON.
I WILL PRESENT TO YOU THE
SUMMARY OF THE LISTENING SESSION
FOR FAMILIES THAT WAS HELD ON
MAY 18, 2022.
THE INCLUDE TEAM ORGANIZED A
LISTENING SESSION WITH PARENTS
WHO HAVE A SON OR DAUGHTER WITH
DOWN SYNDROME AND THE PARENTS
WHO PARTICIPATED REPRESENTED
DIVERSE BACKGROUNDS.
WE PRESENTED SEVERAL QUESTIONS
TO THEM FOR OPEN DISCUSSION.
WE WERE INTERESTED IN LEARNING
ABOUT THEIR POSITIVE EXPERIENCES
AS WELL AS SOME OF THE BARRIERS
THEY'VE ENCOUNTERED IN THEIR
PARTICIPATION IN DOWN SYNDROME
RESEARCH.
AND WHAT IS OUR MISSION?
OUR MISSION IS TO ENGAGE AND
LISTEN TO THE DOWN SYNDROME
COMMUNITY, INVOLVE MORE PEOPLE
WITH DOWN SYNDROME AND THEIR
FAMILIES ESPECIALLY THOSE FROM
DIFFERENT BACKGROUNDS IN
RESEARCH AND THIRD, TO
UNDERSTAND THE NEEDS OF THE
COMMUNITY IN ORDER TO ENGAGED
THEM IN DOWN SYNDROME RESEARCH
THAT BENEFITS THEM.
-- -- ONE OF THE MOST IMPORTANT
ONES THAT FAMILIES HAVE
EXPRESSED IS SPEAK THE LANGUAGE
OF THE PARTICIPANT.
SO THEY FEEL AT EASE WHEN THEY
PARTICIPATE IN RESEARCH.
EDUCATE THE COMMUNITY ON THE
IMPORTANCE OF PARTICIPATING IN
RESEARCH.
BUILD TRUST.
MAKE SAFETY PARAMOUNT AND
PROVIDE COMPENSATION AND SHARE
RESEARCH PROGRESS IN ORDER TO
DEVELOP TRUST.
WE CAN FACILITATE DIVERSE
PARTICIPATION BY PROVIDING
EDUCATIONAL RESOURCES.
WE CAN ENSURE THE UNDERSTANDING
OF THE PROCESS WITH CLEAR
COMMUNICATION.
BUILDING THE RELATIONSHIPS
WITHIN THE COMMUNITY.
SUCH AS PARTICIPATING IN LOCAL
DOWN SYNDROME PARENT
ORGANIZATIONS OR OTHER
ORGANIZATIONS THAT THE PARENTS
MIGHT TRUST.
MAKE RESEARCH ACCESSIBLE TO
FAMILIES.
ONE FAMILY OR ONE PARENT
SUGGESTED ORGANIZING EVENTS IN
DIFFERENT MARGINALIZED
COMMUNITIES AND OFFER SOME KIND
OF COMPENSATION.
THE FAMILIES ARE ALREADY
RECEIVING THEIR NEWSLETTERS.
THEY ARE FOLLOWING THE SOCIAL
MEDIA SO WHY NOT WORK CLOSELY
WITH THEM AND THEN YOU MIGHT BE
ABLE TO REACH SOME OF THE
FAMILIES.
PROMOTE CULTURAL COME PEN SEE
TRAINING TO THE TEAM.
*.
SO IMPORTANT.
THAT IS ANOTHER GOOD SUGGESTION.
WE ALSO PRESENTED TO THE
FAMILIES AN OPPORTUNITY TO
PROVIDE TWO WORDS THAT THEY
COULD DESCRIBE AS SOME OF THE
BARRIERS THAT THEY FEEL WHEN
PARTICIPATING IN DOWN SYNDROME
RESEARCH AND THIS ILLUSTRATION
IS WHAT RESULTED FROM THE WORK
CLOUD THAT WAS GENERATED AS A
RESULT.
AS YOU CAN SEE THE MOST
PROMINENT ONE WAS TIME.
PARENTS EXPRESSED A CONCERN THAT
THEY DON'T HAVE TIME TO
PARTICIPATE IN RESEARCH P. MAYBE
THERE HAS TO BE ANOTHER *
STRATEGY OR A WAY TO HELP THOSE
FAMILIES BY CREATING ANOTHER
ALTERNATIVE.
LANGUAGE IS ANOTHER BARRIER.
TRUST.
EDUCATION.
LOCATION.
FEAR.
TRANSPORTATION IS ANOTHER COMMON
ONE.
HOW CAN WE RESOLVE THESE AND
BUILD TRUST?
WE CAN ENGAGE AND BUILD
RELATIONSHIPS WITH COMMUNITY AND
PARTNER ORGANIZATIONS.
USE SOCIAL MEDIA EFFECTIVELY.
THAT IS ONE OF THE THINGS THAT
ONE OF THE PARENTS MENTIONED.
THEY WILL FEEL COMFORTABLE
RECEIVING INFORMATION VIA SOCIAL
MEDIA.
AND ALSO TO WORK CLOSELY WITH
NATIONAL DOWN SYNDROME
ORGANIZATIONS TO DISSEMINATE
INFORMATION.
LISTEN TO THE FAMILIES AND
PROVIDE EDUCATION IN PLAIN
LANGUAGE EXPLANATION IN ORDER
FOR FAMILIES TO UNDERSTAND.
HOW CAN THE NIH HELP?
WE CAN ENSURE THAT RESEARCH IS
RELEVANT.
HOW CAN THE NIH HELP?
WE CAN ENSURE THAT THE RESEARCH
IS RELEVANT AND THE FAMILIES TO
UNDERSTAND HOW IT WILL HELP
THEIR LOVED ONES.
AND CONDUCT OUTREACH TO FAMILIES
AND PROVIDE INFORMATION IN THEIR
LANGUAGE.
WE RECENTLY LIKE THIS PAST
WEEKEND WE ATTENDED THE NATIONAL
SOCIETY BODY WALK IN NEW YORK.
WE PARTICIPATED IN THE EVENT
WITH THE MOMS AND ALSO WE
PARTICIPATED AT THE NATIONAL
DOWN SYNDROME CONVENTION IN NEW
ORLEANS.
WE'RE PROVIDING INFORMATION TO
FAMILIES AND CONNECTING WITH
THEM TO HELP THEM UNDERSTAND AND
ANSWER ANY QUESTIONS THAT THEY
MAY HAVE.
THIS CONCLUDES MY PRESENTATION.
AND I WOULD LIKE TO INVITE YOU
TO VISIT THE INCLUDE WEBSITE AND
LEARN MORE ABOUT THE INCLUDE
PROJECTS AS WELL AS DOWNLOAD THE
EXECUTIVE SUMMARIES THAT WE WILL
HAVE AVAILABLE IN THE NEXT FEW
WEEKS.
MY E-MAIL IS HERE ON THE SCREEN
AND YOU'RE WELCOMED TO CONTACT
ME ANY TIME AND I WILL BE HAPPY
TO HEAR FROM YOU AND LEARN MORE
FROM WHAT YOU'RE HEARING.
I WOULD LIKE TO INTRODUCE
DR. ARUNA NATARAJAN.
A PROGRAM DIRECTOR AT THE
PEDIATRIC AND NEONATAL DISEASE
AND CRITICAL CARE AT THE
NATIONAL HEART LUNG INTENSIVE
CARE.
DR. NATARAJAN HAS WORKED FOR
OVER 35 YEARS AS A CLINICIAN AND
HAS TAKEN CARE OF MANY CHILDREN
WITH DOWN SYNDROME.
DR. NATARAJAN, YOU'RE NEXT.
>> CAN YOU SEE ME OR HEAR ME?
>> YES.
WE CAN.
>> THANK YOU.
GOOD AFTERNOON, EVERYBODY.
TODAY I WILL BE SHARING WITH YOU
THE PRECEDINGS OF THE LISTENING
SESSION FOR RESEARCHERS IN DOWN
SYNDROME.
AND WHAT THE NIH STAFF DID IS WE
LISTENED AND WE LEARNED A LOT
AND I WILL SHARE THAT WITH YOU.
OUR MISSION AS SUJATA AND LINDA
HAVE ELOQUENTLY TOLD YOU IS TO
ENHANCE PARTICIPATION OF
MINORITY POPULATIONS IN
REGISTRIES, IN RESEARCH
PROTOCOLS AND IN RESEARCH TEAMS.
SO I'LL -- OUR GOAL IS TO ENGAGE
COMMUNITIES AND THE REASON WAS
TO LISTEN AND TO LEARN NOT ONLY
ABOUT THE POSITIVE EFFECTS OR
THE POSITIVE EXPERIENCES THAT
RESEARCHERS HAVE IN THIS KIND OF
RESEARCH BUT ALSO TO IDENTIFY
BARRIERS AND CHALLENGES THAT
THEY HAD PERCEIVED.
SO THAT WE COULD THEN DEVELOP
ACTIONS AND INITIATIVES TO
INCREASE DIVERSE PARTICIPATION.
SPEAKING A LITTLE SLOWLY TO GIVE
THE SPANISH INTERPRETERS TIME TO
INTERPRET.
SO THE FIRST QUESTION WE ASKED
OUR RESEARCH COMMUNITY WAS WHAT
STRATEGIES HAVE IMPROVED DIVERSE
PARTICIPATION IN THEIR
EXPERIENCE AND IT BOILED DOWN TO
TRUST, TRUST AND TRUST.
FOLKS FELT THAT IF THEY ENGAGED
AND PARTICIPATED IN COMMUNITIES
IN ALL CONTEXT, HEALTH AND
EDUCATION AS EXAMPLES NOT
NECESSARILY ONLY IN RESEARCH IT
HELPED.
THEY FELT BY LISTENING TO AND
ENGAGING THE COMMUNITY IN
RESEARCH DESIGN HELPED TO BUILD
TRUST.
IN OTHER WORDS THEY WOULD SHARE
THEIR IDEAS WITH THE COMMUNITY
AND THE THE COMMUNITY WOULD HELP
THEM DESIGN THEIR STUDY.
INVESTIGATORS FELT THAT BUILDING
A CULTURE WHERE WE EMPHASIZED
MUTUAL BENEFIT BOTH TO THE
RESEARCHER AND THE PARTICIPANT
WOULD SORT OF CONVEY -- THAT
WOULD HELP.
THE FACT OF PHYSICAL FEATURES IN
THE RESEARCH DESIGN HELPED SOME
INVESTIGATORS, FOR EXAMPLE
HAVING EEGs WHICH ARE LEADS OR
ELECTRICAL WIRES THAT YOU PUT ON
THE SCALP OF THE CHILD.
AND IF YOU USED SOMETHING THAT
HAD WAS DESIGNED FOR DIFFERENT
TYPES OF HAIR THAT HELPED BUILD
TRUST.
TO SPEAK THE LANGUAGE OF THE
PARTICIPANT AS YOU'VE HEARD
BEFORE.
CONVENIENCE.
TO TRY TO MEET THEM WHERE THEY
ARE LOCATED.
TO MAKE THE CONSENT PROCESS,
TRANSPORTATION TO CLINICAL
TRIALS AND LOGISTICS EASIER.
ALL OF THESE HELPED.
HAVING STUDENTS FROM MAJORITY
COMMUNITIES LEADING RESEARCH
PROJECTS WAS FOUND TO BE
BENEFICIAL AS ALSO TRYING VERY
HARD TO SEAMLESSLY MELD BOTH THE
RESEARCH ACTIVITIES AND THE
CLINICAL SUPPORT.
AND SO HOW CAN WE FACILITATE
DIVERSE PARTICIPATION?
COMMUNICATION, COMMUNICATION AND
COMMUNICATION.
AND LANGUAGE IS NOT ENOUGH.
WE NEED CULTURAL COMPETENCE AND
BEHAVIORS THAT WOULD NOT ONLY
INSPIRE TRUST BUT ALSO IMPROVE
COLLABORATION.
SOME TOPICS LIKE DEVELOPMENTAL
DISABILITIES REALLY NEED
RESEARCH TEAMS WHO HAVE SUPERIOR
LANGUAGE SKILLS IN THE
PARTICIPANTS NATIVE LANGUAGE.
TO BUILD DIVERSITY IN THE
RESEARCH TEAM IS VERY IMPORTANT
AND LASTLY ACTUALLY ENTERING
COMMUNITIES IS SOMETHING THAT WE
NEED TO DO MUCH MORE OF IN
ADDITION TO MOBILE AND ON-LINE
TECHNOLOGIES TO ENHANCE
PARTICIPATION IN REGISTRIES.
AND WE ALWAYS HAVE TO BALANCE
THE VALUE VERSUS THE BURDEN.
BUT THE BURDEN REALLY IS MORE
IMPORTANT BECAUSE IT -- THERE IS
A BURDEN TO THE PARTICIPATION
AND WE HAVE TO BE AWARE OF THAT
AND TO BUILD BRIDGES BETWEEN
ACADEMIC CENTERS AND COMMUNITY
PRACTICES.
THE LATTER BEING WHERE MORE
MINORITY POPULATIONS WILL GO FOR
THEIR CARE.
TO IMPROVE CARE WITH FUNDING FOR
BOTH.
TO REPORT THE RESEARCH OUTCOMES
BACK TO COMMUNITIES.
AND TO RETURN NEW RESEARCH
RESULTS TO PARTICIPANTS SO THAT
WOULD THEN INCENTIVIZE FUTURE
PARTICIPATION.
TO LOGISTICALLY COORDINATE BOTH
RESEARCH AND CLINICAL CARE.
SOMETIMES FAMILIES ON A DAILY
WAGE MAY NOT BE ABLE TO COME TWO
DAYS TO A HOSPITAL.
SO TO HAVE THE RESEARCH STUDY AT
THE SAME TIME WHEN THEY HAVE
THEIR CLINICAL CARE.
TO LEARN WITH OTHERS THAT WORK
WITH DIVERSE POPULATION GROUPS
AND IMPROVE THE SKILL SETS OF
OUR RESEARCH TEAMS.
AND TO USE ON-LINE MESSAGING AND
CONSENT FORMS WHERE WE CAN BUT
ALWAYS MAKE SURE WE HAVE
APPROPRIATE TRANSLATION.
AND SO WHEN WE ASKED OUR
RESEARCHERS TO PROVIDE SOME
WORDS THAT REPRESENTED THEIR
BARRIERS AND CHALLENGES TO
INCLUDING DIVERSE COMMUNITY WITH
DOWN SYNDROME THESE ARE THE
WORDS THAT CAME OUT.
TRUST, LANGUAGE, CONVEYING
BENEFIT AND LOGISTICS.
THESE ARE AREAS THAT WE CAN ALL
WORK ON TOGETHER BUT HOW
SPECIFICALLY CAN NIH HELP?
THIS IS WHAT WE FELT.
WE MUST COLLABORATE WITH
NATIONAL ORGANIZATIONS IN DOWN
SYNDROME RESEARCH.
CLINICIANS NEED TO BE ENCOURAGED
TO IMPROVE FLEXIBILITY AND
SCHEDULING.
ADDRESS THE NEED FOR STUDY
PARTNERS TO ACTUALLY ACCOMPANY
PARTICIPANTS THROUGHOUT STUDIES.
IMPROVE COMPENSATION.
IMPROVE LOGISTICS.
SHARE EXPERIENCES AMONG
RESEARCHERS.
BUILD RELATIONSHIPS IN THE
COMMUNITY SUCH AS ADVOCATES IN
FAITH-BASED GROUPS.
AND ALSO ENCOURAGE STUDENTS AND
RESEARCHERS FROM LESS
REPRESENTED GROUPS.
SO WHAT DID WE TAKE HOME WITH
US?
HOW CAN WE HELP AND THIS IS WHAT
THE RESEARCHERS SUGGESTED.
SUPPORTING EFFORTS TO INCREASE
DIVERSITY BY MELDING CLINICAL
CARE WITH RESEARCH AND FUNDING
THOSE SORTS OF PROJECTS.
INCLUDING COMMUNITY SUPPORT IN
SOME OF OUR FUNDING MAKE I WILLS
SO RESEARCHERS CAN * MAINTAIN
THEIR CONNECTION TO THE
COMMUNITY.
ADDRESS THE ROLE OF MEDICAL
DEVICES THAT MAY HAVE A
PARTICULAR MATCH WITH A
PARTICULAR RACIAL GROUP OR
PHYSICAL CHARACTERISTIC.
CONSIDER DIVERSITY, COMMUNITY
BUILDING AND TECHNOLOGY
SOLUTIONS IN TERMS OF EVALUATION
OF HOW WE DECIDE WHO GETS
FUNDED.
AND MOST IMPORTANTLY BUILD
COHORTS AS WAS MENTIONED THAT
TRULY INCLUDE PEOPLE ALL PEOPLE
WITH DOWN SYNDROME.
AND SO THAT GAVE US A LOT OF
HOMEWORK TO DO.
WE THANK RESEARCHERS FOR
PROVIDING INFORMATION ON THIS
LISTENING SESSION TO US.
THAT ENDS MY PORTION OF THE
TALK.
I'D LIKE TO INTRODUCE TO YOU
DR. MALIHA ILIAS.
WE'RE FORTUNATE TO HAVE HER.
A PROGRAM DIRECTOR AT THE HEALTH
INEQUITIES AND GLOBAL HEALTH
BRANCH AT THE CENTER OF
TRANSLATIONAL RESEARCH AND
IMPLEMENTATION SCIENCES AT THE
NATIONAL HEART, LUNG BLOOD
INSTITUTE.
SHE LEADS THE COMMUNITY
ENGAGEMENT ALLIANCE -- RESOURCE.
INCLUDING GRANTS, COMPETITIVE
AGREEMENTS RELATED TO GLOBAL AND
DOMESTIC HEALTH EQUITY RESEARCH.
AND SHE IS AN EXPERT IN HEALTH
COMMUNICATION RESEARCH
ESPECIALLY IN LOW AND MIDDLE
INCOME COUNTRIES.
OVER TO YOU DR. ILIAS
>> THANK YOU SO MUCH, ARUNA.
SO I'M GOING TO PACE MYSELF AS
ARUNA DID FOR OUR TRANSLATORS.
COULD THE ORGANIZERS PLEASE
CONFIRM THAT I HAVE 15 MINUTES
FOR THIS PRESENTATION.
PERFECT.
THANK YOU SO MUCH.
THANKS SO MUCH FOR THE
INTRODUCTION.
I'M HERE TODAY TO TALK TO YOU
ABOUT THE COMMUNITY ENGAGEMENT
ALLIANCE.
SO FOR THOSE OF YOU WHO ARE NOT
FAMILIAR WITH CEAL THIS WAS A
PROGRAM THAT NIH STARTED IN
RESPONSE TO THE HEALTH
DISPARITIES AND HEALTH
INEQUITIES THAT WERE UNEARTHED
DURING THE PANDEMIC AND THAT
ESSENTIALLY DISPROPORTIONATELY
AFFECTED PEOPLE FROM SPECIFIC
COMMUNITIES.
SO AS PART OF THE CEAL ALLIANCE
AS THE RESOURCES WHICH INCLUDES
21 TEAMS ACROSS THE UNITED
STATES AND THESE INCLUDE
ACADEMIC AND COMMUNITY PARTNERS
AS THOSE RESOURCES GREW THERE
WAS A NEED TO REALIZE THAT WE
COULD POTENTIALLY SHARE
RESOURCES WITH OTHER CLINICAL
RESEARCHERS WHO ARE TRYING TO
IMPROVE THEIR COMMUNITY
ENGAGEMENT AND INCLUSIVE
PARTICIPATION EFFORTS.
WHICH IS WHY THIS PARTICULAR
PROGRAM WAS LAUNCHED IN 2021
THROUGH A RESEARCH OPPORTUNITY
ANNOUNCEMENT.
SO HERE I WANT TO HIGHLIGHT THAT
WE AWARDED THIS PROGRAM TO THE
UNIVERSITY OF PITTSBURGH
CLINICAL AND TRANSLATIONAL
SCIENCES INSTITUTE.
DR. LIZ MILLER AND DR. MELINDA
-- ARE THE PIs AND ARE LEADING
THIS PARTICULAR EFFORT.
BUT THEY ARE JOINED WITH DR. AL
RICHMOND AND THE PARTNERSHIPS
FOR HELP.
IT HELPS FACILITATE THE WORK
BETWEEN ACADEMIC AND NONACADEMIC
AND ESPECIALLY COMMUNITY
PARTNERS IN RESEARCH AND YOU CAN
SEE THERE ARE OTHER COMMUNITY
PARTNERS THAT ROUND OUT THE
TEAM.
SO AGAIN THE MAIN PURPOSE OF THE
RESOURCE --
>> WE'RE TRYING TO HELP CLINICAL
RESEARCHERS THAT ARE FUNDED BY
NIH AND IMPROVE THEIR COMMUNITY
ENGAGEMENT AND INCLUDE
PARTICIPATION EFFORTS BY
LEVERAGING THE RESOURCES THAT WE
HAVE ACCESS TO.
BEFORE THE MIDDLE BOX WAS
POPULATED I WANTED YOU TO FOCUS
ON THE FIRST AND THE LAST PART
OF THE PROCESS.
THE CEACR HAS SET UP STANDARD
OPERATING PROCEDURES OF THE
EXPERTISE AND RESOURCES
AVAILABLE WITH REGARDS TO
COMMUNITY ENGAGEMENT.
I ENCOURAGE YOU TO VISIT THE
CEAL ALLIANCE AND THE CEACR WEB
PAGE.
BUT THERE ARE MANY, MANY
RESOURCES THAT ALL OF THESE 21
TEAMS ACROSS THE U.S. ARE ABLE
TO PROVIDE NOW HAVING WORKED TO
FIGHT AGAINST COVID-19
DISPARITIES INCLUDING
INFORMATION ON VACCINATING
CHILDREN, COMMUNICATION
MATERIALS ETC.
SO THE SEEKER TEAM HAS PUT
TOGETHER A MAP.
-- FOR EXAMPLE SOMEBODY PART OF
THE INCLUDE NETWORK -- WHO ARE
LOOKING TO IMPROVE THEIR
COMMUNITY EARN GAUGEMENT AND
INCLUSIVE PARTICIPATION THEY
APPROACH THE CEACR TEAM WITH A
CONSULT REQUEST.
ONCE WE ASSESS THE SCOPE OF THE
CONSULTATION THE CEACR TEAM THEN
USES THE ASSET MAP TO CURATE A
PANEL OF CUSTOMIZED COMMUNITY
ENGAGEMENT EXPERTS ALONG WITH
EXPERTS FROM THE COMMUNITIES
THAT THE USERS ARE ACTIVELY
TRYING TO ENGAGE WITH AND THESE
PANELISTS COME TOGETHER TO
PROVIDE THE CONSULTATION WHICH
IS STEP THREE HERE TO EVALUATE
THE NEEDS AND DEVELOP TAILORED
RECOMMENDATIONS FOR THAT
PARTICULAR CONSULLING.
A LOT OF WHAT I'M SAYING SEEMS
ABSTRACT BUT THERE ARE SLIDES
WHICH WILL SHOWCASE SOME OF THE
ACTIVE CONSULTS THAT WE'RE
ENGAGED IN AND THAT WILL HELP
EXPLAIN HOW THE PROCESS WORKS.
ONCE THE CONSULTATION TAKES
PLACE THE CEACR TEAM PUTS
TOGETHER THE RECOMMENDATIONS
THAT HAVE BEEN MADE BY THIS
SPECIAL CURATED PANEL OF EXPERTS
FOR THE PARTICULAR CONSUL TEE
AND WE * TRY TO PROVIDE THIS IN
A QUICK TURN AROUND FASHION.
CONSULTS NEED TO BE QUICK.
NOT TO SLOW IT DOWN.
SO WE TRY TO DO THESE CONSULTS
WITHIN 30 DAYS.
OF COURSE SCHEDULING SOMETIMES
MEANS THERE IS A 30 DAYTIME LINE
THAT IS EXTENDED.
BUT OUR TARGET IS TO PROVIDE
CONSULTS IN A QUICK FASHION AS
TO NOT TO HINDER CLINICAL
RESEARCH.
AT THE END WE GO BACK TO OUR
CONSULTEES -- 60 DAYS AFTER THE
CONSULT -- 180 DAYS AFTER TO GET
THE FEEDBACK THAT HELPS US AND
CONTINUE TO REFINE OUR PROCESS.
THAT IS WHAT I WAS TRYING TO
SHOWCASE INITIALLY -- WE'RE
CONSTANTLY TRYING TO LEARN TO
PROVIDE MUCH MORE TARGETED
TAILORED CONSULTS TO EACH OF THE
PEOPLE WHO COME IN.
SO THESE ARE SOME OF THE TOPIC
THAT'S THE CEACR TEAM CAN
PROVIDE CONSULTS ON.
THIS WILL AGAIN BECOME A LITTLE
BIT MORE EASIER TO UNDERSTAND
FOR MANY OF OUR AUDIENCE MEMBERS
WHEN I GO THROUGH SOME OF THE
EXAMPLES.
BUT THESE INCLUDE THINGS LIKE
DEVELOPING COMMUNITY COMPETENT
OUTREACH AND COMMUNICATION
STRATEGIES AND INTERVENTIONS.
UNDERSTANDING THE BARRIERS TO
INCLUSIVE PARTICIPATION AND
RESEARCH AND MANY WERE BROUGHT
UP BY LINDA AND ARUNA AS WELL
SUCH AS TRANSPORTATION ISSUES,
LANGUAGE BARRIERS ETC.
BUILDING AN INCLUSIVE RESEARCH
WORKFORCE.
ADDRESSING VACCINE HESITANCY IN
MINORITY COMMUNITIES AS WELL AS
IMPROVING COMMUNITY ENGAGED
RESEARCH STUDY DESIGNS.
SO THIS IS A QUICK SNAPSHOT OF
WHERE WE ARE WITH CEACR.
IT WAS AWARDED IN 2021.
THE TEAM ACTIVELY STARTED
WORKING IN NOVEMBER OF 2021.
SO IT HAS NOT YET BEEN A YEAR
BUT IN THIS TIME CEACR HAS DONE
A PILOT CONSULT WITH THE ACTIVE
TEAM AND THEY'VE DONE 11 OTHER
CONSULTS.
WITH MANY OCCURRING OVER THE
SUMMER SO ONCE WE WERE ABLE TO
DO THE PILOT AND REFINE OUR
PROCESS AND DO THE PROMOTION AND
HELP INFORM PEOPLE THAT CEACR
EXIST AS A RESOURCE FOR NIH
FUNDED RESEARCHERS AS I'M DOING
HERE TODAY FOR THE INCLUDE
COMMUNITY OUR CONSULT NUMBERS
ARE INCREASING.
I SEE THE CHAT.
I NEED TO SLOW DOWN A LITTLE BIT
MORE.
FORGIVE ME.
I'M GOING TO BE A LITTLE BIT
SLOWER IN MY SPEECH.
SO IN THESE 11 CONSULTS WE'VE
WORKED WITH MULTIPLE RESEARCH
PROGRAM USERS AND INCLUDING SOME
MAJOR NIH FUNDED CLINICAL
TRIALS.
SUCH AS ACTIVE 6 WHICH IS
ACTIVELY TRYING TO REPURPOSE
TREATMENTS FOR THE TREATMENT OF
COVID AS WELL AS RECOVER WHICH
IS CLINICAL TRIAL NETWORKS THAT
ARE FOCUSED OFF LONG COVID
RESEARCH.
WE'VE ALSO WORKED WITH OTHER
CEAL TEAMS THAT WANT TO IMPROVE
CERTAIN ASPECTS OF THEIR
COMMUNITY ENGAGEMENT.
THROUGH THESE CONSULTS WE'RE
ALSO ACTIVELY WORKING WITH
VARIOUS COMMUNITY GROUPS
INCLUDING SPANISH SPEAKERS,
RURAL POPULATIONS, AMERICAN
INDIANSERS OLDER ADULTS * TO
MAKE A FEW AND THIS HIGHLIGHTS
WHAT OUR CONSULTS ENTAIL.
THE INTAKE AND THE MEETING WITH
THE EXPERT PANEL THAT AND THEN
THE DEVELOPMENT OF TAILORED
RECOMMENDATIONS BASED ON WHAT
THE INITIAL ASK WAS.
SO AS I MENTIONED EARLIER I
WANTED TO SHOWCASE WHAT A
CONSULT COULD ENTAIL BY USING
SOME EXAMPLES OF ACTIVE
CONSULTATION THAT'S WE'VE JUST
DONE.
SO ONE CONSULT THAT WE DID WAS
ACTUALLY WITH THE ACTIVE 6
PITTSBURGH SITE AND THEY WERE
TRYING TO IMPROVE THEIR
ENROLLMENT OF POPULATIONS THAT
ARE GENERALLY UNDER REPRESENTED
IN BIOMEDICAL RESEARCH THAT.
IS WHAT THE ACRONYM UBR STANDS
FOR UNDER REPRESENTED BIOMEDICAL
RESEARCH.
BECAUSE WE KNOW GROUPS ARE NOT
WELL REPRESENTED IN BIOMEDICAL
RESEARCH.
SO THE ACTIVE 6 PIT TEAM WAS
TRYING TO IMPROVE THEIR
ENROLLMENT WITHIN THESE GROUPS
AND THEY CONTACTED US.
WE DID THE INITIAL INTAKE.
WE PUT TOGETHER A PANEL OF
EXPERTS WHICH INCLUDED COMMUNITY
MEMBERS FROM THE RACIAL GROUPS
THAT THEY WERE TRYING TO IMPROVE
THEIR NUMBERS IN THE CLINICAL
PARTICIPATION AND WHERE THIS
PARTICULAR PANEL WAS ABLE TO
PROVIDE THEM WITH VARIOUS
STRATEGIES ON HOW TO IMPROVE
ENROLLMENT BY FOCUSING ON THINGS
LIKE LANGUAGE INCLUSIVITY.
I THINK LINDA MENTIONED THAT IT
MATTERS WHAT LANGUAGE THE
RECRUITERS ARE SPEAKING OR WHAT
LANGUAGE THE MATERIAL IS
PROVIDED TO THEM AND COMMUNITY
MEMBERS.
ALSO BRIDGING THE DIGITAL
DIVIDE.
WE CANNOT ASSUME THAT EVERYONE
HAS ACCESS TO DIGITAL RESOURCES
AND HAS THE SAME LEVEL OF
DIGITAL LITERACY.
THOSE THINGS NEED TO BE
ADDRESSED BY THE CLINICAL
RESEARCHERS WHO WANT THE
COMMUNITY MEMBERS TO PARTICIPATE
IN THEIR RESEARCH.
AND WE NEED TO REMOVE THE BUR
BURDENS OF ENGAGEMENT.
PEOPLE HAVE DAY JOBS.
PEOPLE HAVE OTHER BURDENS
BECAUSE OF THOSE JOBS.
THEY ARE UNABLE TO ATTEND
MULTIPLE DAYS IN ORDER TO
PARTICIPATE IN CLINICAL
RESEARCH.
AND ALSO THE TEAM HELPED THEM
STRATEGIZE ABOUT REACHING OUT
AND IDENTIFYING TO TRUSTED
COMMUNITY PARTNERS.
SO FOLKS WITH FAITH-BASED
NETWORKS THAT CAN PROVIDE
ACCURATE INFORMATION TO THE
COMMUNITY MEMBERS AND IT'S
COMING FROM THE MOUTHS OF THE
COMMUNITY MEMBERS THAT THEY
TRUST.
FOR EXAMPLE, THE FAITH-BASED
LEADERS.
WE PROVIDED THESE RECOMM --
RECOMMENDATIONS AND THEY WERE
SPEAKER.
THE CEACR TEAM WAS APPROACHED BY
THE STAKEHOLDER ADVISORY OF
COMMITTEE WHO ASKED HOW DO WE
DISSEMINATE THESE BEST PRACTICES
FOR COMMUNITY ENGAGEMENT TO ALL
OF OUR VARIOUS SITES?
AND THE CEACR TEAM WAS ABLE TO
THE ACTIVE 6 PITTSBURGH CONSULT
TO SHOWCASE WHAT THEY LEARNED
FROM THAT CONSULT A HOW THAT
COULD BE SHARED ACROSS MULTIPLE
SITES WITHIN THE ACTIVE 6
NETWORK.
ONE THING THAT I WANT TO MENTION
IS THAT WE'RE LEARNINGS THAT
CONSULTS HAVE TO BE SPECIFIC TO
THE RESEARCH SPACE WHERE THE
RESEARCH IS TAKING PLACE BECAUSE
THE COMMUNITIES -- THE NEEDS ARE
GOING TO BE DIFFERENT WHICH IS
WHY WE ENCOURAGE FOLKS TO REACH
OUT TO US IF THEY HAVE A
QUESTION ABOUT IMPROVING THEIR
COMMUNITY ENGAGEMENT EFFORTS
PLEASE REACH OUT AND WE COULD
POTENTIALLY HELP THE CEACR TEAM
COULD HELP ANSWER QUESTIONS AND
MAKE THEM SPECIFIC TO THE AREAS
THAT YOU'RE WORKING IN OR THE
POPULATIONS THAT YOU'RE HOPING
TO WORK WITH.
SO I'M NOT GOING TO GO INTO MUCH
DETAIL HERE.
THIS IS REALLY SHOWCASING IN THE
INTEREST OF TIME I WANT TO
SHOWCASE THAT CEACR CAN PROVIDE
A RANGE OF CONSULTS.
THE ONE THAT I MENTIONED BEFORE
WITH ACTIVE 6 THAT IS THE FULL
30 DAY CONSULT THAT I SHOWED THE
PROCESS FOR.
BUT THERE ARE QUICKER CONSULTS
THAT WE'VE ALSO PROVIDED.
FOR EXAMPLE, FOLKS ARE SOMETIMES
LOOKING FOR SPEAKERS TO INCLUDE
IN THEIR WORK SHOPS AND
CONFERENCES THAT BRING IN THE
PERSPECTIVE OF THE PATIENTS AND
THE CAREGIVERS AND WE CAN
LEVERAGE THE CEAL RESOURCES TO
FIND THOSE PEOPLE AND PUT THEM
IN CONTACT WITH THE WORKSHOP
ORGANIZERS SO THEY CAN BRING IN
THE UNIQUE PERSPECTIVES.
WE HAVE ALSO PROVIDED CONSULTS
TO CEAL TEAMS.
THE TEXAS CEAL TEAM WANTED TO
CONSIDER ALTERNATE PAYMENT
METHODS.
7 -- AND THE CEACR TEAM MADE A
FEW RECOMMENDATIONS WHICH THEY
WERE ABLE TO USE RIGHT AWAY.
CREATE AN OMBUDSMAN POSITION.
AND THEY WERE ALSO ABLE TO
DEVELOP AN ESCROW FUND SO THAT
PAYMENTS TO COMMUNITY PARTNERS
CAN HAPPEN IN A QUICK AND
APPROPRIATE AND RESPECTFUL
MANNER.
SO I JUST WANT TO LEAVE YOU ALL
WITH A COUPLE OF OTHER THINGS.
I MENTIONED THAT CEACR NOW HAS A
DEDICATED WEB PAGE.
THE ADDRESS IS LISTED THERE BUT
REALLY IF YOU GOOGLE CEAL
CONSULTATIVE RESOURCE IT SHOULD
POP-UP AND YOU SHOULD GET ALL OF
THE INFORMATION IF YOU WANT TO
PUT IN A REQUEST FOR A CONSULT.
AND THEN ALSO CEACR HAS BEEN
PUTTING TOGETHER SPEAKER SERIES
THAT FOCUS ON COMMUNITY
ENGAGEMENT AND INCLUSIVE
PARTICIPATION TOPICS.
WE'VE DONE TWO SO FAR THAT
FOCUSED ON INCLUSIVE
PARTICIPATION AS WELL AS --
OFFERING COMMUNITY PARTNER
COMPENSATION.
THOSE ARE AVAILABLE ON OUR WEB
PAGE.
WE RECORD THEM AND THEY ARE
AVAILABLE ON OUR WEB PAGE.
WE HAVE AND I ANOTHER ONE
HAPPENING ON THE 23rd OF
THIS MONTH WHICH WILL BE FOCUSED
ON LANGUAGE EQUITY.
I WOULD ENCOURAGE FOLKS TO LOOK
UP ON OUR WEB PAGE AND REGISTER.
AND HOPEFULLY AS CEACR DOES MORE
AND MORE OF THESE SPEAKER SERIES
WE WILL BUILD A VIRTUAL TOOLKIT
THAT RESEARCHERS CAN ACCESS IF
THEY ARE INTERESTED IN A
SPECIFIC TOPIC WITH REGARDS TO
INCLUSIVE PARTICIPATION AND
COMMUNITY ENGAGEMENT.
THEY CAN GO TO OUR WEB PAGE AND
LISTEN TO THAT DEDICATED SPEAKER
SERIES.
THANK YOU FOR INVITING ME HERE
TODAY AND I HOPE MY PRESENTATION
WAS CLEAR AND MY APOLOGIES TO
THE INTERPRETERS IF I WAS STILL
FAST IN MY SPEECH.
THANK YOU.
>> THANK YOU SO MUCH DR. ILIAS
FOR THAT PRESENTATION.
I THINK WE CAN GO -- WELL WE
STARTED A FEW MINUTES LATE SO
LET'S SEE IF WE HAVE A FEW
QUESTIONS.
OTHERWISE WE'LL TAKE A 10 MINUTE
BREAK POST Q&A.
IF YOU HAVE A QUESTION PLEASE
RAISE YOUR HAND.
UNMUTE AND PLEASE TURN ON YOUR
VIDEO OR YOU CAN ALSO PUT YOUR
QUESTIONS IN THE CHAT FOR THE
SPEAKERS OF THIS SESSION ONE.
MYSELF, MS. GARCIA AND
DR. ILIAS.
DR. NATARAJAN HAD TO LEAVE FOR
ANOTHER MEETING.
SO DR. ILIAS HAD A QUESTION.
THANK YOU FOR THIS 101 ON THIS
RESOURCE.
IS IT AVAILABLE FOR NIH PROGRAMS
AS WELL?
OR IS IT ONLY FOR RESEARCH
COMMUNITY OUTSIDE OF NIH?
>> THAT IS A GREAT QUESTION.
THIS RESOURCE IS AVAILABLE TO
ONLY NIH FUNDED RESEARCHERS.
SO USUALLY THAT ENTAILS ACADEMIC
INSTITUTIONS, HOWEVER WE
ENCOURAGE ACADEMIC INSTITUTIONS
TO HAVE COMMUNITY PARTNERS SO
THEY CAN COME IN THROUGH THEIR
ACADEMIC PARTNERS.
BUT THIS IS AVAILABLE TO ALL NIH
FUNDED RESEARCHERS.
>> THANK YOU AND I SEE THERE IS
A QUESTION FROM DOLORES HARDEN.
WHERE DID YOU MEET WITH NATIVE
AMERICAN FAMILIES?
>> THANK YOU, DELORES.
I ASSUME YOUR QUESTION RELATES
TO WHEN WE WERE TALKING ABOUT
ENGAGING THROUGH OUR CONSULTS
WITH NATIVE AMERICAN
POPULATIONS.
WHAT I MEANT TO SAY WAS THAT
WE'VE GOTTEN REQUESTS FROM
CLINICAL RESEARCHERS WHO WANT TO
IMPROVE THEIR COMMUNICATION WITH
OR ENGAGEMENT WITH NATIVE
AMERICAN POPULATIONS SO WE HAVE
BEEN ABLE TO ACCESS EXPERTS WHO
WORK WITHIN NATIVE AMERICAN
POPULATIONS WITHIN CEAL AND WHO
HAVE ACCESS TO THOSE COMMUNITIES
TO THOSE PATIENTS AND WHO CAN
BRING IN THOSE PERSPECTIVES TO
THE PANEL DISCUSSION AND SO THAT
WE'RE ABLE TO PROVIDE
RECOMMENDATIONS WITH REGARDS TO
COMMUNITY ENGAGEMENT THAT ARE
MORE TARGETED FROM THE
PERSPECTIVE OF THESE NATIVE
AMERICAN COMMUNITIES.
SEALE.
>> I DON'T SEE ANY RAISED HANDS.
WE WILL GO FOR A 10 MINUTE
BREAK.
AND WE WILL RETURN AT
1:10:00 P.M. EASTERN TIME.
>>WELCOME BACK, EVERYONE.
SO MY NAME IS ERIKA TARVER.
A SENIOR PROJECT MANAGER WITHIN
THE DIVISION OF NEURAL SCIENCE
AND I'M EXCITED TODAY TO
MODERATE THIS SESSION.
I'LL GIVE A BRIEF INTRODUCTION
AND BIO.
STARTING WITH THE FAMILIES AND
SELF-ADVOCATES.
WE HAVE JOINING US TODAY
MS. NORA BAHAMONDE.
7 AN EMPLOYEE WITH THE FEDERAL
GOVERNMENT.
THE PROUD MOTHER OF TWO.
HER SON 34 YEARS OLD AND HER
DRAY 16 YEARS OLD AND WAS
DIAGNOSED WITH DOWN SYNDROME A
FEW DAYS AFTER HER BIRTH.
NORA'S MISSION HAS BEEN TO HELP
CONNECT DIFFERENT DOWN SYNDROME
ORGANIZATIONS NATURALLY AND
INTERNATIONAL WITH THE SPANISH
SPEAKING COMMUNITY.
*.
SHE HAS HELPED TO ENSURE THAT
SERVICES ARE AVAILABLE FOR
HISPANIC FAMILIES AND CONTINUES
TO WORK WITH NONPROFIT
ORGANIZATIONS.
IF YOU DON'T MIND TURNING ON
YOUR CAMERA AND ALSO SO THAT WE
CAN SEE YOU JOIN THE PANELISTS.
OUR OTHER PANELISTS TODAY IS MS.
SHE IS AN ENTREPRENEUR AND RUNS
HER OWN ON-LINE BUSINESS.
SHE ENJOYS SINGING AND TRAVELING
AND IS PROUD TO BE A
SELF-ADVOCATE SPEAKER IN
ADDITION TO BEING A MODEL FOR
THE BE BEAUTIFUL BE YOURSELF
FASHION SHOW.
SHE HOPES TO INSPIRE OTHERS
SHOWING THAT INDIVIDUALS WITH
DOWN SYNDROME CAN DO.
OUR OTHER PANELISTS IS MS. KATE
DOUGHERTY.
THE CURRENT PRESIDENT OF THE
BOARD OF DIRECTORS -- SHE IS THE
PRESIDENT AND FOUNDER OF DOWN
COUNTRY OPERATING UNDER THE
FUNDAMENTAL PRINCIPLES THAT
EVERY CHILD IS A GIFT.
EVERY CHILD CAN LEARN AND EVERY
CHILD LEARNS DIFFERENTLY.
SHE IS A NATIONAL SPEAKER.
A CONSULTANT AND IS PASSIONATE
ABOUT TECHNOLOGY AND EDUCATION
AND POSSIBILITIES FOR #EVERY
CHILD.
ANOTHER PANELISTS IS MR. DOLORES
HARDEN.
AN EARLY CHILDHOOD DIRECTOR AT
THE NEW MEXICO PARENT'S REACHING
OUT PROGRAM AND A MEMBER OF THE
NAVAJO NATION ADVISORY COUNCIL
ON DISABILITIES.
SHE IS THE MOTHER OF FOUR
WONDERFUL CHILDREN.
THREE SONS AND ONE DAUGHTER AND
TWO OF HER SONS HAVE
DISABILITIES.
JUSTIN HAS CEREBRAL PALSY AND
SEAN WHO HAS DOWN SYNDROME IS 28
YEARS OLD.
ORGANIZING PARENT SUPPORT
GROUPS, CONFERENCES AND
WORKSHOPS.
SHE HAS COLLABORATED WITH
EDUCATORS, SERVICE PROVIDERS AND
NONPROFIT AGENCIES IN VARIOUS
COMMUNITIES.
WE'RE ALSO HAPPY TO WELCOME
MS. TAYLOR MURPHY.
AN ACTIVE HIGH SCHOOL STUDENT
AND A GLOBAL SELF-ADVOCATE
SPEAKER FROM ARKANSAS.
SHE SERVES ON STUDENT COUNCIL,
DRAMA CLUB AND FAMILY CAREER AND
COMMUNITY LEADERS OF AMERICA.
TAYLOR LIKES GIVING BACK TO HER
COMMUNITY WHICH INCLUDES
SPEAKING AS WELL AS BEING A
MODEL FOR THE BE BEAUTIFUL BE
YOURSELF FASHION SHOW.
SHE ENJOYS BAKING AND EDUCATING
CHILDREN WITH SPECIAL NEEDS.
SHE PLANS TO BE A VETERINARIAN'S
ASSISTANT.
WE HAVE MS. CHANTEL NEAL-HOWE.
AN ACTIVE MEMBER OF THE
AFRICAN-AMERICAN BLACK PEOPLE
WHO HAVE DOWN SYNDROME.
SHE GREW UP IN INDIANA AND
LEARNED EARLY ON THE IMPORTANCE
OF SUPPORTING ORGANIZATIONS AND
EFFORTS THAT CHARTER THEMSELVES
TO SERVE THE UNDERSERVED.
THEY ENGAGE FAMILIES AND
EDUCATORS AND CHURCH MINISTRIES
IN ESTABLISHING DISABILITY
INCLUSION PROGRAMS.
PROFESSIONALLY SHE IS A
FINANCIAL PLANNING AND ANALYSIS
CONSULTANT FOCUSING ON CORPORATE
FINANCE AND PLANNING AND PROCESS
IMPROVEMENT.
SHE RESIDES IN SPRING, TEXAS
WITH HER HUSBAND ZACHERY AND HER
DAUGHTER ZOE WHO HAS DOWN
SYNDROME.
ANOTHER PANELISTS TODAY IS MR
MR. CHIDANAND RAJGHATTA.
HE IS A FOREIGN EDITOR AND U.S.
CORRESPONDENT AT THE TIMES OF
INDIA.
HE HAS BEEN A WRITER AND
PROFESSIONAL JOURNALIST FOR 40
YEARS AND HAS TRAVELED
EXTENSIVELY REPORTING FROM
HOTSPOTS ACROSS THE WORLD
INCLUDING WAR ZONES AND PEACE
EFFORTS.
HE SPECIALIZES IN ISSUES RELATED
TO WHOLE SITUATION, MIGRATION,
TECHNOLOGY AND FOOD AND
AGRICULTURE, ECONOMIC TRENDS.
THEIR YOUNGEST SON WAS BORN WITH
DOWN SYNDROME IN 2018.
THEY ARE ACTIVE IN THE NETWORK
IN MONTGOMERY, MARYLAND.
NEXT UP WE HAVE MR. JOSE TORRES
RODRIGUEZ.
HE IS THE PRESIDENT AT THE PORE
DOWN SYNDROME FOUNDATION AND A
PARTNER AT THE CMA ARCHITECTS
AND ENGINEERS *.
MR. RODRIGUEZ GANNON ACTIVE ROLE
IN THE PUERTO RICO FOUNDATION IN
2004 WHEN HIS YOUNGEST DAUGHTER
WAS BORN WITH DOWN SYNDROME AND
STARTED RECEIVING THERAPIES AND
EDUCATIONAL SERVICES.
HE BECAME A MEMBER OF THE BOARD
OF DIRECTORS AND IN 2012 HE
JOINED THE COMMITTEE -- --
PLAYING AN ACTIVE ROLE
COORDINATING FUND-RAISING
ACTIVITIES AND SERVING AS A
LIAISON BETWEEN THE FOUNDATION
AND CONTRIBUTORS.
HE BECAME PRESIDENT OF THE BOARD
OF DIRECTORS AND REINFORCES THE
EXHIBITING PROGRAMS AS WELL AS
SCHEDULING FUND-RAISING EARTH
AND PLAYING A ROLE IN THE
ADMINISTRATION OF PRD SF.
FROM OUR RESEARCH COMMUNITY WE
HAVE DR. JOAQUIN ESPINOZA.
HE DIRECTS A DIVERSE RESEARCH
PROGRAM WITH EMPHASIS ON DOWN
SYNDROME THAT IS SUPPORTED BY
THE NIH, THE NATIONAL SCIENCE
FOUNDATION AND GLOBAL.
HE DIRECTS THE HUMAN TRY ZONE
PROJECT, A STUDY OF THE
POPULATION WITH DOWN SYNDROME.
WHICH IS ENABLED THE DESIGN OF
CLINICAL TRIALS TO IMPROVE
HEALTH OUTCOMES IN DOWN
SYNDROME.
IN ADDITION HE CURRENTLY SERVES
AS THE LEADER OF THE
ADMINISTRATIVE AND OUTREACH CORE
OF THE NIH INCLUDE PROJECT DATA
COORDINATING CENTER WHICH IS A
NEW DATA RESOURCE THAT AIMS TO
ACCELERATE DISCOVERIES INTO THE
MECHANISMS UNDERLYING THE
INCREASED RISK OF CO-OCCURRING
MEDICAL CONDITIONS FOR PEOPLE
WITH DOWN SYNDROME.
OUR NEXT IS DR. ANDREW
McCORMICK.
AN ASSOCIATE PROFESSOR OF
PEDIATRICS.
HE WORKS WITHIN THE DOWN
SYNDROME CENTER OF WESTERN PA AT
THE UNIVERSITY OF PITTSBURGH
MEDICAL CENTER CHILDREN'S
HOSPITAL OF PITTSBURGH AS THE
TEAM DOCTOR.
HE IS THE DIRECTOR OF THE
HEALTHY TRANSITION PROGRAM.
A HOLISTIC AND LONGITUDINAL
APPROACH OF PREPARING TEENS AND
YOUNG ADULTS FOR ADULTHOOD.
HE IS A CORE TEACHING FACULTY AT
THE UNIVERSITY OF PITTSBURGH
SCHOOL OF MEDICINE.
WE ALSO HAVE DR. ESTHER SON WHO
IS JOINING US.
AN ASSOCIATE PROFESSOR AT THE
DEPARTMENT OF SOCIAL WORK.
AT THE COLLEGE OF STATON ISLAND
IN THE CITY UNIVERSITY OF NEW
YORK.
HER INTEREST IS THE ENHANCEMENT
OF THE PHYSICAL AND MENTAL
HEALTH AND EMOTIONAL WELL-BEING
OF CHILDREN AND ADULTS WITH
FAMILIES WITH DISABILITIES.
AND IN PARTICULAR SHE FOCUSED
OFF ACCESS TO CARE, SERVICE
UTILIZATION, QUALITY OF CARE
AMONG MINORITY CHILDREN WITH
AUTISM AND WOMEN WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES AND VIOLENCE
AGAINST PEOPLE WITH
DISABILITIES.
HER WORK HAS BEEN SUPPORTED BY
THE RESEARCH FUND.
THE HEALTH RESOURCES AND
SERVICES ADMINISTRATION, THE
U.S. DEPARTMENT OF HEALTH AND
HUMAN SERVICES AND THE CITY
UNIVERSITY OF NEW YORK AMONG
OTHERS.
NEXT WE HAVE DR. NOEMI SPINAZZI.
AT THE UNIVERSITY OF CALIFORNIA
SAN FRANCISCO -- CHILDREN'S
HOSPITAL IN OAKLAND.
SHE HAS A SPECIAL INTEREST IN
CHILDREN WITH COMPLEX CARE NEEDS
AND DEVELOPMENTAL DISABILITIES.
AND SHE FOUNDED A SPECIALIZED
CLINIC SERVING PATIENTS.
DR. SPINAZZI WAS AWARDED THE
DIVERSITY AWARD IN TO 22.
HER WORK WITH CHILDREN AND
FAMILIES FROM ALL OVER THE WORLD
MOTIVATES HER TO BE ADVOCATE FOR
IMMIGRANT RIGHTS AND HEALTH.
AND * WE HAVE DR. IGNACIO TAPIA.
HIS MAIN RESEARCH INTEREST ARE
THE PATHOPHYSIOLOGY OF THE
OBSTRUCTIVE SLEEP APNEA AND THE
CONSEQUENCES FOR INDIVIDUALS
WITH DOWN SYNDROME.
HIS RESEARCH HAS BEEN FUNDED BY
THE AMERICAN HEART ASSOCIATION,
THE UNIVERSITY OF PENNSYLVANIA,
THE AMERICAN SLEEP MEDICINE
FOUNDATION AND THE NATIONAL
INSTITUTES OF HEALTH.
WE WELCOME YOU ALL.
IF YOU'RE ABLE TO TURN ON YOUR
VIDEOS THAT WOULD BE WONDERFUL.
AND IF WE CAN GO TO THE NEXT
SLIDE PLEASE ... THAT IS A
CORRECTION.
MS. NEAL-HOWE NOW LIVES IN
GEORGIA.
THIS IS OPEN TO ANYONE.
WOULD ANYONE LIKE TO SHARE WITH
US ANY POSITIVE EXPERIENCES THAT
THEY'VE HAD WHEN TAKING PART IN
RESEARCH STUDIES AND WE ASK THAT
YOU RAISE YOUR HAND OR FEEL FREE
TO UNMUTE AND BEGIN TALKING.
>> HI, THIS IS KATE DOUGHERTY.
I BELIEVE IN RURAL COMMUNITIES.
SO I LIVE IN WHAT WOULD BE
TERMED IN THE MIDDLE OF NOWHERE.
SO AND THAT IS ON THE BEST DAY.
ST. LOUIS IS ABOUT TWO AND A
HALF HOURS AWAY.
CHICAGO SIX.
KANSAS CITY THREE AND A HALF.
7 THANKS TO THE ANNUAL
CONVENTION PUT ON THE NBSC WE
FOUND OUT ABOUT THE TRIAL AND MY
SON WAS ABLE TO BE THE 21st
CHILD IN THE COUNTRY.
WE WOULD NOT HAVE HAD ACCESS TO
THIS INFORMATION ON ANY LEVEL
HAD IT NOT BEEN BEING BLESSED
AND ABLE TO TRAVEL AND ACCESS
INFORMATION ON THE STIMULATOR.
IT FOR ELLIOT WHO IS AN
INDIVIDUAL WITH DOWN SYNDROME
HAS BEEN LIFE CHANGING ON EVERY
LEVEL.
IT'S IMPROVED COGNITION, SPEECH
AND LANGUAGE.
IT'S IMPROVED BEHAVIOR, HIS
QUALITY OF LIFE AND QUITE
FRANKLY TO THE MAYO CLINIC HAS
PROLONGED AN OPEN HEART SURGERY
THAT WE THOUGHT HE WOULD HAVE TO
HAVE BEFORE HE EXITED HIGH
SCHOOL.
PARTICIPATING IN THIS RESEARCH
STUDY HAS BEEN MONUMENTAL BOTH
TO OUR FAMILY AND A POSITIVE
EXPERIENCE.
HOWEVER U JUST SO EVERYONE KNOWS
* THERE IS ABSOLUTELY AN INGROWN
FEAR OF HOW ANY INFORMATION
GAINED OR USED WILL BE USED AND
GATHERED.
SO I TRY AND TELL AS MANY PEOPLE
AS SHAUNTEL COULD TELL YOU ABOUT
THE BENEFITS OF PARTICIPATING IN
RESEARCH STUDIES FOR BOTH
QUALITY OF LIFE AND JUST QUITE
FRANKLY FOR THE INFORMATION
GATHERING PURPOSES BUT I
UNDERSTAND PEOPLE ARE EXTREMELY
PROTECTIVE OF THEIR ADULTS AND
CHILDREN WITH DOWN SYNDROME.
HOWEVER, WHEN YOU HAVE DIFFERENT
RESEARCH STUDIES THAT ARE TRULY
VETTED AND ARE POTENTIALLY LIFE
CHANGING BOTH FROM AN ABILITY TO
GATHER MORE INFORMATION FOR
PEOPLE IT IS TRULY A BEAUTIFUL
THING SO, THAT IS MY POSITIVE
EXPERIENCE FROM THE STICKS WITH
PARTICIPATING IN A RESEARCH
STUDY.
>> THANK YOU SO MUCH,
MS. DOUGHERTY.
ARE THERE OTHERS?
AND AS YOU UNMUTE YOURSELVES TO
SPEAK OR RAISE YOUR HAND WE ASK
THAT YOU TAKE INTO CONSIDERATION
OUR INTERPRETERS SO AS YOU'RE
SPEAKING WITH YOUR CADENCE
PLEASE SLOW DOWN A LITTLE BIT.
BUT YOURS WAS GREAT.
YOU WERE FINE.
ARE THERE OTHERS?
>> YEAH.
THEY'VE RAISED THEIR HANDS.
I CAN'T SEE THAT.
THANK YOU SO MUCH.
UNMUTE YOURSELF.
>> HI.
>> WE NEED TO UNMUTE YOU.
JUST A SECOND.
GIVE US A SECOND TO SEE IF WE
CAN UNMUTE.
[ SPEAKING SPANISH ]
>> GREAT.
THANK YOU SO MUCH.
PLEASE YADIRA.
WOULD YOU LIKE TO SHARE WITH US
YOUR POSITIVE EXPERIENCE THAT
YOU'VE HAD WITH TAKING PART IN A
RESEARCH STUDY?
>> YES.
OKAY.
I HAVE BEEN A PART OF THE HUMAN
-- -- HAD TO WORK WITH PEOPLE
WITH DOWN SYNDROME AND MAKE ME
FEEL WELCOME.
>> THAT IS PERFECT.
THANK YOU SO MUCH FOR SHARING
ABOUT YOUR EXPERIENCE.
IT REALLY MAKES A DIFFERENCE
WHEN YOU HAVE STAFF THAT KNOW
HOW TO WORK WITH INDIVIDUALS
WITH DOWN SYNDROME AS WELL AS
MAKING YOU FEEL WELCOME.
THANK YOU SO MUCH.
MS. DOLORES HARDEN.
I THINK SHE MAY HAVE LOWERED THE
HAND.
MS. TAYLOR MURPHY, WOULD YOU
LIKE TO SHARE YOUR EXPERIENCE?
>> MY FAMILY PARTICIPATED IN
FOCUS GROUP FOR THE GLOBAL ADULT
GATHERING.
IT WAS -- WE COULD COMPLETE IT
IN OUR OWN TIME.
>> THAT IS WONDERFUL.
THANK YOU SO MUCH.
THERE IS SOMETHING TO BE SAID
ABOUT HAVING YOUR OWN TIME AND
THE PACE IN WHICH TO SUBMIT THAT
WORKS WELL FOR YOU.
>> EXCUSE ME -- ERIKA, DOLORES
MAY HAVE HAD AN ISSUE WITH HER
AUDIO IF YOU WOULD LIKE TO CALL
ON HER AGAIN.
SHE WAS MUTED
>> ABSOLUTELY.
MS. HARDEN WOULD YOU LIKE TO
SHARE YOUR EXPERIENCE?
DOLORES.
>> WE'LL COME BACK TO HER,
ERIKA.
>> NOT A PROBLEM.
>> THANK YOU.
THANK YOU ALL AGAIN.
GOOD AFTERNOON.
I WAS HAPPY TO SEE THE RECAP
FROM THE EARLIER LISTENING
SESSIONS AND EVERYTHING THAT WAS
LEARNED SO THANKS FOR SHARING
THOSE EARLIER.
AND TO KATE'S POINT RURAL AND
THEN JUST ALL OF OUR COMMUNITIES
FOR THOSE OF US WHO ARE THERE.
WE HAVE REHASHED A LOT SOME OF
THE CHALLENGES AND BARRIERS FOR
THE AFRICAN-AMERICAN COMMUNITY
AND SOME OF THE WORD CHARTS OR
PUZZLES THAT WE SAW HIT HEAD ON.
I THINK ME IT'S GETTING INTO THE
COMMUNITIES.
WE KNOW ABOUT ACCESS AND TIME
BUT GETTING INTO THE COMMUNITIES
AND WORKING WITH THOSE WHO ARE
ALREADY TRUSTED I WAS HAPPY TO
SEE THAT AND I THINK WE CAN MAKE
HUGE LEAPS AND BOUNDS IF WE
START TO BUILD UPON THAT.
AND BUILD THOSE RELATIONSHIPS.
WITHIN THE COMMUNITY AND FOR MY
DAUGHTER ZOE WHO'S 16 AND A
WILLING PARTICIPANT IN RESEARCH
SHE AS WELL HAS DONE -- A COUPLE
IN THE HUMAN TR ICU M * PROJECT.
SHE IS WILLING TO GIVE BLOOD OR
WHATEVER SAMPLES.
AND THE THING THAT WORKS FOR HER
IS THE FACT THAT THE INDIVIDUALS
WHO ARE RUNNING THE STUDIES SO
WHO ARE TOUCHING HER AND POKING
AT HER AND PRODDING THEY TALK TO
HER.
THEY GET DOWN AT HER LEVEL AND
TALK TO HER.
THEY ARE NOT LOOKING AT ME MOM
OR HER DAD AND THIS LAST TIME AT
THE CONFERENCE SHE PREFERRED
THAT I SIT OUTSIDE THE ROOM SO I
WAS HAPPY TO SEE THAT AND THE
INDIVIDUALS THAT WERE RUNNING
THE PARTICULAR STUDY AND GOING
TO DO THE BLOOD DRAW AND TAKE
HER INFORMATION AGAIN THEY
DIRECTLY TALKED OR SPOKE TO HER.
SO I WOULD SAY KEEP THAT IN MIND
AS WELL.
>> THANK YOU SO MUCH.
I DON'T KNOW IF THERE WAS ANYONE
ELSE WHO HAD INPUT.
>> GOOD AFTERNOON.
MY NAME IS JOSE TORRES.
I WOULD LIKE TO SAY THANK YOU
FOR THE OPPORTUNITY TO
PARTICIPATE IN THIS PANEL.
PARTICIPATION OF RESEARCH HAS
BEEN LIMITED FOR ME.
THEY IN WHICH WE PARTICIPATE
THEY MAKE US WAIT ON HOW WE'RE
DEALING WITH OUR CHILD WITH THE
EDUCATION.
WE THINK SOMETIMES -- WE ARE
DOING A GOOD JOB OR WE'RE DOING
THE RIGHT THINGS FOR THE
EDUCATION OF OUR SON AND OUR
CHILD -- THE SHORT-TERM GOALS.
WE'RE DOING A GOOD PARTICIPATION
AND THE CORRECT THINGS AND ALSO
LONG-TERM, WE ARE VERY BUSY
DAILY THINGS -- TRYING TO GIVE
ALL THAT THEY NEED RIGHT NOW BUT
WE ARE NOT THINKING IN DETAIL
WHAT CAN WE DO?
PARTICIPATING IN RESEARCH
SOMETIMES -- YOU START TO THINK
ARE WE DOING THE RIGHT THINGS?
WHAT CAN WE IMPROVE?
BASICALLY THE EXPERIENCE IN
RESEARCH.
WE HAVE TO PROVIDE THE
OPPORTUNITY TO OTHER PERSONS --
LOW-INCOME FAMILIES TO
PARTICIPATE IN PANELS AND SOME
OTHER RESEARCH.
THANK YOU.
>> THANK YOU.
THAT'S AN EXCELLENT POINT ABOUT
REPRESENTATION AND REACHING TO
ALL PARTS OF THE COMMUNITY.
CHIDANAND.
>> HI.
WE HAVE LIMITED EXPERIENCE.
WE WELCOME MORE OPPORTUNITIES.
I THINK IT WAS ONE OR TWO
OCCASIONS --
>> I THINK WE GET CALLS FOR
RESEARCH STUDIES BUT NONE OF
THEM HAVE MATCHED OUR SON.
SO WE HAVE NOT HAD THE
OPPORTUNITY TO ENGAGE.
AND I THINK TO THE POINT OF
ENGAGEMENT IN PRESCHOOL
ACTIVITIES AND DEALING WITH
COUNTY LEVEL ASSESSMENT OF
SKILLS I FEEL THAT WE OFTEN TO
THAT EXTENT FEEL SOMETIMES LIKE
RESEARCH SUBJECTS.
IN THE SENSE THAT WE ARE -- OUR
SON'S KNOWLEDGE AND TEST SCORES
ARE BEING BENCHMARKED AGAINST
EARLY CHILDHOOD TEST SCORES THAT
ARE NOT DRIVEN TOWARDS SPECIAL
NEEDS CHILDREN OFTEN TIMES.
SO I FEEL IN THAT SENSE WE OFTEN
SOMETIMES FEEL LIKE RESEARCH
SUBJECTS IN TERMS OF WHAT THE
INPUT IS AND THE FEEDBACK THAT
WE GET.
I'LL STOP THERE.
>> NO.
I THINK ALL OF THAT IS VERY
IMPORTANT.
THANK YOU ALL FOR SHARING.
I APPRECIATE THAT.
MS. DOLORES HARDEN.
WE'LL TRY AGAIN.
CAN YOU HEAR US?
>> CAN YOU HEAR ME NOW?
>> WE CAN.
PERFECT.
>> OKAY.
FINALLY.
THANK YOU FOR ALLOWING ME TO
PARTICIPATE IN THIS PANEL
DISCUSSION.
IT'S VERY INTERESTING TO HEAR
ALL VIEWPOINTS AND AS A PARENT
AS WELL.
FOR ME AND AS A NAVAJO FAMILY IN
THE NORTHWEST REGION OF NEW
MEXICO IN THE FOUR CORNERS AREA
I HAVE NOT HEARD OF ANY FAMILIES
PARTICIPATING IN ANY RESEARCH
STUDIES OR OPPORTUNITIES THAT
THEY MIGHT BE ABLE TO
PARTICIPATE.
BUT THIS IS SOMETHING THAT I DO
WHEN I GET WITH FAMILIES I SHARE
UPDATED INFORMATION AND
POSSIBILITY OF SHARING WITH THE
FAMILIES WHETHER IT'S IN NEW
MEXICO, ARIZONA OR UTAH.
WITH THE FAMILIES THAT RESIDES
WITHIN NAVAJO NATION.
AS WELL AS I'M PART OF THE
NAVAJO NATION ADVISORY COUNCIL
ON DISABILITIES AND WE CERTAINLY
TALK ABOUT ALL OF THE
INFORMATION FOR FAMILIES THAT
HAVE FAMILY MEMBERS WITH
DISABILITIES THAT RESIDE WITHIN
NAVAJO NATION AS WELL AS OFF THE
RESERVATION BECAUSE THEN THERE
ARE BORDER TOWNS TO THOSE
RESERVATION OR FAMILIES AS WELL
AS THE PUEBLO FAMILIES IN NEW
MEXICO.
THERE ARE 19 PUEBLOS IN NEW
MEXICO THAT I DON'T THINK ANY OF
THOSE FAMILIES HAVE PARTICIPATED
IN ANY OPPORTUNITIES OR RESEARCH
STUDIES AS WELL.
JUST WANTED TO SHARE THAT
INFORMATION.
>> WE APPRECIATE THAT.
I THINK IT'S HELPFUL FOR US TO
UNDERSTAND THE POSITIVE
EXPERIENCES AS WELL AS THE
OPPORTUNITIES FOR CONTINUED
OUTREACH AND ENGAGEMENT.
SO ONE LAST COMMENT BY
MS. DOUGHERTY BEFORE WE MOVE TO
THE NEXT SLIDE
>> THANK YOU.
I DIDN'T, I CAN'T SEE THE
FAMILY'S NAME WHO SAID THE QUOTE
PARTICIPATING IN BENCHMARKS THAT
ARE NOT APPROPRIATE.
YOU TOUCHED MY HEART BECAUSE ONE
OF THE BIGGEST ISSUES THAT YOU
SEE IN RURAL AREAS IS THE
EDUCATION AND MEDICAL SILOS AND
I THINK YOU SEE THOSE CULTURALLY
AS WELL WHERE OUR KIDDOS ARE
EXTREMELY MEDICAL IN NATURE AND
YET THERE IS NOT -- A GOOD
PIPELINE FOR LACK OF A BETTER
WORD TO HELP EXPLAIN THEIR
MEDICAL DIAGNOSIS TO AN
EDUCATIONAL SYSTEM THAT IS
LOOKING AT THINGS FROM AN
ACADEMIC STANDPOINT THAT MANY
OFTEN TIMES IS NOT MEDICALLY
DEVELOPMENTALLY APPROPRIATE.
SO I WANT YOU TO KNOW THAT I
FEEL YOU EXPONENTIALLY ON THAT.
ALSO THESE ARE POSITIVE
EXPERIENCES WHICH MIGHT HAVE
BEEN POSITIVE IN THE RESEARCH
THAT I PARTICIPATED IN BUT I
WILL SAY THAT I AM EXTREMELY
PICKY ABOUT WHAT RESEARCH
OPPORTUNITIES I SHARE OUT
ORGANIZATIONALLY.
IF I DON'T KNOW, I PROBABLY GET
5-10 E-MAILS A WEEK FROM
DIFFERENT PEOPLE WANTING AND
THAT MAY BE A LOW BALL -- FROM
PEOPLE WANTING ME TO HAVE MY
ORGANIZATION SEND OUT RESEARCH
OPPORTUNITIES TO DIFFERENT
PEOPLE.
HOWEVER, THAT IS NOT SOMETHING
THAT I DO UNLESS I KNOW WHERE
IT'S COMING FROM.
IF JOAQUIN SEND SOMETHING IT ARE
OUT I WILL SEND IT ON.
IF IT COMES FROM THE NIH I WILL
SEND IT ON.
IF I'M NOT FAMILIAR WITH THE
RESEARCH OPPORTUNITY I WILL NOT
SEND IT ON BECAUSE IN THIS DAY
AND AGE IF YOU DON'T KNOW WHO
YOU'RE DEALING WITH I NEVER WANT
ANY INFORMATION TO BE USED
ERRONEOUSLY OR NOT PROPERLY
QUANTITATIVELY AND QUALITATIVELY
EXAMINED.
>> THANK YOU FOR SHARING THAT.
SO IN THE INTEREST OF TIME WE
WILL GO TO THE NEXT SLIDE IF WE
MAY.
NOW WE HAVE TO DO TWO SIDES OF
THE COIN.
IF WE COULD ASK OUR RESEARCHERS
IF THEY COULD SHARE WITH US WHAT
EXAMPLES HEARING THE POSITIVE
EXPERIENCES AS WELL AS THE
OPPORTUNITIES FOR FUTURE
DEVELOPMENT AND ENGAGEMENT IF
ANY OF THE RESEARCHERS COULD
SHARE WITH US THEIR EXAMPLE.
-- EXPERIENCES.
DR. McCORMICK.
>> I JUST WANTED TO START WITH I
THINK ONE OF BIG TAKE AWAYS THAT
I COME FROM IS KATE HIT ON THIS,
THE EFFECTIVE SILOING AND I
THINK THAT IS REALLY IMPORTANT
WHEN YOU THINK ABOUT ACADEMICS
AND HOW WE'RE SILOED JUST AWAY
FROM THE GREATER COMMUNITY.
THERE WAS A GREAT PAPER THAT WAS
WRITTEN BY ONE OF MY COLLEAGUES
AT PIT WHERE THEY FOCUSED ON
THIS CONSENT OF WORKING WITH
COMMUNITIES RATHER THAN ON
COMMUNITIES.
BECAUSE OFTEN AS RESEARCHERS ARE
DELIVERING THESE OPPORTUNITIES
TO COMMUNITIES WHERE THEY WANT
TO RECRUIT PEOPLE AND HAVE THEM
PART OF THEIR STUDY BUT THEY ARE
WORKING ON COMMUNITIES RATHER
THAN WORKING WITH COMMUNITIES.
I'M GOING TO TAKE 30 SECONDS TO
EXPLAIN A QUICK STORY THAT HELPS
UNDERSTAND THIS.
IN PITTSBURGH WE HAVE AN IN
EQUALITY REPORT THAT LOOKS AT
HOW HAS RACIAL DISPARITY AND
GENDER DISPARITY IMPACTED OUR
COMMUNITY.
PITTSBURGH WAS DOING AN HORRIFIC
JOB.
IT WAS LABELED AS ONE OF THE
MOST UNLIVABLE CITIES FOR BLACK
WOMEN.
FOR THE RESEARCHERS THEY WERE
ALL ACADEMICS.
AND THE OUT POUR FROM THAT
REPORT IS THIS IS NOTHING NEW.
THIS IS SOMETHING WE'VE BEEN
WORKING ON AND WE'RE VERY ANGRY
THAT YOU DEVELOPED THIS REPORT
WITHOUT ACTUALLY COMING TO US
AND GETTING FEEDBACK.
SO OUT OF THAT GREW THIS
RESEARCH CALLED THE PITTSBURGH
STUDY THAT HAS COME OUT IN WHICH
RESEARCHERS AND COMMUNITY
PARTNERS ARE FUNDED.
WE HAVE COMMUNITY SCIENTISTS AND
ACADEMICS WORKING ON THESE
DIFFERENT DOMAINS AND NOT SAYING
WE'RE COMING FROM AN ACADEMIC
PERSPECTIVE AND THEN APPLY IT
BUT HOW CAN WE TOGETHER THINK
ABOUT BOTH COMMUNITY CENTERED
FOCUSED ON WHAT THE COMMUNITY
NEEDS ARE AND WORKING WITH
RESOURCES.
WE NEED TO CHANGE THE PARADIGM.
FUNDING COMES TO ACADEMICS AND
RESEARCHERS AND WE'RE NOT
INCLUDING OUR COMMUNITY PARTNERS
IN THE PROCESS.
ONE WAY TO INCREASE RECRUITMENT
AND HAVING A MORE INCLUSIVE
PERSPECTIVE IS WE NEED TO FUND
COMMUNITY SCIENTISTS.
AND THAT WILL INCLUDE AN
INCREASE NOT ONLY IN RECRUITMENT
BUT THINKING ABOUT THE PROBLEMS
THAT ARE AFFECTING FROM A
COMMUNITY-BASED APPROACH.
AND SO THAT IS ONE OF THE
THINGS.
YOU GUYS TALKING ABOUT THE WAYS
IN WHICH WE NEED TO REFRAME HOW
WE FUND AND DO RESEARCH.
COMING FROM A DIFFERENT
PERSPECTIVE.
>> THANK YOU SO MUCH.
I APPRECIATE IT.
DR. ESPINOZA.
>> THANK YOU, ERIKA.
AN EXAMPLE THAT I WOULD LIKE TO
GIVE IS OUR COLLABORATION FOR US
TO BE ABLE TO COLLABORATE WITH A
LARGE ADD ADVOCACY IS INSTRUMEN.
WHAT WE WITH OBTAINED IS WE
GENERATE TRUST IN THE COMMUNITY.
THE FOUNDATION VOUCHES FOR US.
THE SCIENTIST VOUCHES FOR THE
STUDIES THAT WE'RE PERFORMING
AND THEY GET US IN FRONT OF THE
COMMUNITY.
THANKS TO THE FOUNDATION --
ORGANIZATIONS GET TO TRAVEL TO
THE FAMILIES -- WE WERE IN NEW
ORLEANS EARLIER THIS YEAR AND I
WANT TO SAY TO "GUYS TO DOLORESN
MEET LATE NOVEMBER AT THE NAVAJO
FOUNDATION.
AND LASTLY COMMUNICATION.
WE THINK WE'RE SPEAKING CLEARLY
AND IT TURNS OUT THAT WE'RE NOT.
SO BY PLANNING WITH THE
ORGANIZATION WE GET A LOT OF
CANDID FEEDBACK ABOUT OUR
LANGUAGE AND PRINTED MATERIALS
AND POWER POINTS.
AND WE'RE EDUCATED AND MAKE SURE
THAT WE COMMUNICATE CLEARLY TO
THE FAMILIES.
SO FOR ALL OF THE RESEARCHERS
FINDING A PARTNER ADVOCACY
ORGANIZATION COULD BE VERY
BENEFICIAL.
>> EXCELLENT POINT.
THANK YOU AS WELL.
DR. SPINAZZI.
>> I WANTED TO SHARE WE HAVE I
WAS THE CO-PI ON A STUDY
RECENTLY CALLED CONFIRM THAT IS
MEANT TO DEVELOP ASSESSMENT TOOL
FOR SELF-MANAGEMENT SKILLS FOR
FAMILIES WITH COMPLEX CARE
NEEDS.
ONE OF THE THINGS IS THAT WE HAD
STRICT ENROLLMENT GOALS FOR
DIFFERENT POPULATIONS.
WE HAD A BIG PROBLEM.
WE HAD ENROLLED TOO MANY
AFRICAN-AMERICAN PATIENTS AND
SPANISH SPEAKING LATINO X
PATIENTS AND I FEEL PROUD OF
THIS PROBLEM THAT WE WERE
STRUGGLING TO ENROLL WHITE
PATIENTS.
WE KNEW THAT OUR FAMILIES OF
CHILDREN WITH COMPLEX HEALTH
CARE NEEDS ARE REALLY BUSY AND
THEY ARE REALLY BUSY WITH CARING
FOR THE KID AND THE SIBLINGS AND
MANAGING SCHOOL AND WORK AND
TRYING TO SURVIVE IN THE BAY
AREA THAT IS SO EXPENSIVE SO WE
MADE SURE THAT RECRUITMENT WOULD
HAPPEN AT THE TIME OF A VISIT
AND THAT RECRUITMENT WOULD
HAPPEN WHEN THEY WERE WAITING
FOR ME TO SHOW UP.
SO IF I WAS SEEING THEM THE CARE
COORDINATOR KNEW TO BUZZ AROUND
ME AND SEE IS THE PATIENT
WAITING?
I SHOULD USE THEIR TIMEWISELY.
OR ARE THEY WAITING FOR SHOTS OR
BLOOD WORK.
* IT WAS OBVIOU OBVIOUS.
WE SAW QUICKLY THAT THOSE
PATIENTS THAT WE COULD NOT
RECRUIT IN THE MOMENT WE WERE
HAVING A TOUGH TIME REACHING
AFTERWARDS.
SO KNOWING THESE THINGS AND
USING THEM AS LESSONS LEARNED.
ALSO IT'S VERY IMPORTANT TO NOTE
THAT OUR PATIENTS FEEL REALLY
CARED FOR.
AND SO, IT'S NOT SURPRISING FOR
THEM TO BE APPROACHED REGARDING
RESEARCH.
AND THAT THE SAME STAFF WHO ARE
OUR CLINICAL RESEARCH
COORDINATORS ARE ALSO SKILLED IN
USING COMMUNITY NAVIGATION
SERVICE CALLED FIND CONNECT.
SO IN THE SAME BREATH THEY ARE
ALSO DOING A NEEDS ASSESSMENT
AND CONNECTING THEM WITH
COMMUNITY RESOURCE THAT'S CAN
BENEFIT THEM AND SOLVE PROBLEMS.
I SAY IF WE WANT TO RECRUIT A
DIVERSE PATIENT POPULATION
REALLY, REALLY AND NOT JUST
LITHE NIDALLY BUT SOCIO
ECONOMICALLY DIVERSE.
BECAUSE THERE IS LOTS OF BIGGER
PROBLEMS LIKE A ROOF OVER YOUR
HEAD.
BUT IF WE REALLY HAVE THIS GOAL
THEN WE NEED TO SUPPORT THE
CLINICAL PROGRAMS THAT ARE
SERVING THESE PATIENTS.
THAT WE CANNOT HAVE THE SILO OF
RESEARCH BEING DISCONNECTED TO
THE WAY WE FUND DOWN SYNDROME
PROGRAMS.
BECAUSE THEN WE'RE GOING TO
ARTIFICIALLY SEPARATE THE
PROCESSES AND MISS OUT ON THIS
PROCESS OF TRUST BUILDING THAT
IS SO CRUCIAL FOR RECRUITING THE
DIVERSE COMMUNITY THAT WE'RE
AIMING FOR.
>> THANK YOU SO MUCH.
I APPRECIATE IT.
DR. TAPIA.
>> THANK YOU.
IN ORDER TO IMPROVE
ACCESSIBILITY AND EQUITY WE WERE
FORTUNATE TO HAVE A QUALITATIVE
STUDY WHERE WE PLAN FROM THE
GET-GO THE INTERVIEWS WOULD BE
VIA PHONE AT ANY TIME OF THE
DAY.
SO IT WOULD BE EASIER FOR THEM.
SO OUR RECRUITMENT WAS NOT
AFFECTED BY THE PANDEMIC AND
THEN WHEN WE MOVED TO THE
CLINICAL TRIAL PART OF THE STUDY
WE HAVE A DECREASED THE BURDEN
SUCH AS OFFERING DIFFERENT SITES
WHERE THEY NEED TO GO.
LIKE A TEST BY ONE OF THE
COORDINATORS AND THIS MAY SEEM Y
BUT THERE IS A LOT OF WORK.
AND ALSO THE RESEARCH
COORDINATOR NEEDS TO DRIVE ONE
HOUR TO BE WITH THE FAMILY THAT
CAN BE MAYBE 30 MINUTES FOR THE
FAMILY.
BUT THE FAMILIES APPRECIATE.
WE'VE MOVED ANY POSSIBLE
CLINICAL INTERACTION IF POSSIBLE
BY VIDEO VISITS AND WE ARE ABLE
TO AFTER HOURS.
>> SO BEING FLEXIBLE.
THAT'S AN AMAZING POINT.
>> FLEXIBLE AND MEETING THE
FAMILIES WHERE THEY ARE AT.
>> THANK YOU SO MUCH.
DR. SON.
>> HELLO.
-- -- ECCO FROM OTHER
RESEARCHERS BUT I WANT TO FOCUS
ON INCLUSION AND ACCESSIBILITY
IN MY RESEARCH.
SO WHEN I RECRUITED IMMIGRANTS,
ASIAN POPULATION BECAUSE I GO
THREE OUT OF FOUR IMMIGRANT
POPULATION -- ASIAN POPULATIONS
ARE IMMIGRANT SO FOR THEM ALSO
FOR THEM THE TRANSLATION
SERVICES ARE CRITICAL.
SO EVEN THOUGH THEY HAVE --
INTERESTED IN PARTICIPATING IN
MY RESEARCH BUT IF THE
INTERVIEWS OR FOCUS GROUP
INTERVIEWS ARE NOT PROVIDED BY
THEIR OWN LANGUAGE WE CANNOT GET
THEIR VOICES.
SO ONE OF MY PROJECTS I WORKED
ON I WORKED WITH FIRST OF ALL I
WORKED WITH COMMUNITY PARTNERS
SO THEY CAN SPEAK MORE TYPICAL
LANGUAGES SO WE CAN EXPLAIN THE
PURPOSE OF OUR STUDY AND
RESEARCH METHODS AND LOD --
LOGISTICS.
AND ALSO THEY WERE LOW-INCOME
FAMILIES.
SO WE WERE TRYING TO RECRUIT AND
INTERVIEW THOSE FAMILIES AT THE
AGENCY.
BECAUSE LIKE ONCE OR TWICE A
WEEK THEY COME INTO THE AGENCY.
SO THEY DON'T NEED TO TRAVEL OR
DON'T NEED TO MAKE ANOTHER TIME
TO DO INTERVIEWS AND WE PROVIDED
A STIPEND BUT THE CRITICAL THING
WAS WE HIRED BILINGUAL RESEARCH
ASSISTANT WHO HAS A SIMILAR --
BACKGROUND LIKE OUR PARTICIPANTS
AND WE TRAINED THEM AND THEN WE
SENT THEM TO THOSE FAMILIES SO
THEY WERE MORE WILLING TO
PROVIDE THEIR STORIES TO THE
PEOPLE WHO LOOK SIMILAR WHO CAN
SPEAK THEIR OWN LANGUAGES.
SO THERE THAT WAS ONE OF THE
STRATEGIES.
ANOTHER THING THAT I LEARNED
FROM ANOTHER RESEARCH FOCUSING
-- ON -- THE POPULATION -- THE
ON-LINE SURVEYS AT THE AGENCY
THE DIRECTOR -- THOUGHT THIS IS
-- AND I WANT TO INTRODUCE YOUR
STUDY TO OTHER PEOPLE.
HE DIRECTED THE DIRECTORS OF
OTHER AGENCIES IN NEW YORK CITY.
THE BUILDING IN STRONG IN THE
TRUST RELATIONSHIP AND LEADING
TO FUTURE STUDY AND THEN IT
MAKES ME MORE -- MAKES ME EASY
TO RECRUIT NEW PARTICIPANTS AND
I HAVE LOTS OF CHANGES TO
INTRODUCE -- THE SOCIAL WORKER
AND RESEARCHERS.
WITH THOSE TWO THINGS PROVIDING
SERVICES TO THOSE IMMIGRANT
POPULATIONS AND THEN WE ARE
BUILDING A STRONG AND GOOD
POSITIVE RELATIONSHIP WITH
COMMUNITY PARTNERS IS NOT JUST
SHORT-TERM BUT BASED ON THE
LONG-TERM RELATIONSHIP CAN HELP
THOSE RESEARCH.
>> THANK YOU SO MUCH DR. SON.
A LOT OF THIS SEEMS TO ECCO THE
POINTS THAT WERE HIGHLIGHTED
FROM THE LISTENING SESSIONS.
SO IT'S IMPORTANT TO KNOW AND I
THINK WE'RE HEARING IT MORE THAN
ONCE.
SO, IT'S IMPORTANT TO DRIVE THIS
POINT HOME.
SO IF WE CAN GO TO THE NEXT
SLIDE BECAUSE I WANT TO BE
RESPECTFUL OF TIME AND I KNOW WE
HAVE LOTS OF QUESTIONS AND WE
WANT TO HAVE MORE ENGAGEMENT
FROM THE PANELISTS AS WELL.
SO IF YOU CAN GO TO THE NEXT
SLIDE FOR ME, PLEASE.
THANK YOU SO MUCH.
SO THIS IS A TWO PART QUESTION.
WE HAVE FOR OUR FAMILIES.
COULD YOU DESCRIBE SOME OF THE
CHALLENGES THAT YOU FACE.
SOME OF YOU HAVE SHARED THAT
ALREADY WITH TAKING PART IN DOWN
SYNDROME RESEARCH?
AND HOW EXACTLY DID YOU ADDRESS
THOSE CHALLENGES?
THAT IS THE PART THAT WE'RE
INTERESTED IN.
AND I'LL SEE IF TAYLOR OR --
THANK YOU, TAYLOR
>> I AM A SOPHOMORE IN HIGH
SCHOOL AND I HAVE A VERY ACTIVE
SCHEDULE.
IT'S HARD TO PARTICIPATE IN
RESEARCH.
MY FAMILY TRIES TO PLAN RESEARCH
TIME AROUND MY BREAKS.
>> THANK YOU SO MUCH, TAYLOR.
SO TAKING INTO CONSIDERATION
YOUR BUSY SCHEDULE AND BEING
WILLING TO ACCOMMODATE YOU.
THAT'S AN EXCELLENT POINT.
KATE.
OR KATE IF YOU DON'T MIND I'LL
SEE IF I CAN ASK YADIRA FIRST.
>> I KNOW ABOUT BUSINESS AND --
I LIKE WHEN I RECEIVE A GIFT
CARD FOR MY PARTICIPATION.
>> THAT IS A GREAT POINT.
THANK YOU.
SO IT'S IMPORTANT THAT YOUR TIME
IS VALUED AND APPRECIATED AND
THEN NOT ONLY JUST THE GIVING
BACK TO RESEARCH BUT A NICE GIFT
CARD IS NICE FOR YOUR
PARTICIPATION AS WELL AND
CONGRATULATIONS ON YOUR
BOUTIQUE.
7
>> THANK YOU.
>> ABSOLUTELY.
KATE.
>> THANK YOU.
TAYLOR I WANT TO THANK YOU FOR
BRINGING UP THE ATTENDANCE
POLICY ISSUES.
FOR MANY OF OUR SELF-ADVOCATES
AT LEAST THOSE THAT ARE
SCHOOL-AGE AND/OR EMPLOYMENT AGE
-- THE ATTENDANCE POLICIES THAT
DON'T DIFFERENTIATE FOR
MEDICALLY KIDS WHO NEED TO
PARTICIPATE IN MEDICAL RESEARCH
TRIALS AS WELL AS INSURANCE FOR
MANY.
I'M GOING TO ADDRESS SOME THAT I
KNOW OF THAT HAVE RECENTLY COME
UP.
INSURANCE CAN BE A BARRIER TO
PARTICIPATING IN SOME OF THE
TRIALS DEPENDING.
EVEN THOSE TRIALS THAT ARE CLOSE
TO RESOLUTION THAT WOULD APPEAR
TO MOST OF US SITTING ON THE
OUTSIDE IT WOULD BE A SIMPLE
INSURANCE BUT ATTENDANCE
POLICIES WITHIN THE SCHOOLS --
THAT CAN PRESENT BARRIERS.
TRAVEL AND TRAVEL COSTS FOR MANY
OF THE FAMILIES AND NOT TO
MENTION ONCE YOU IF YOU HAVE TO
PHYSICALLY BE ON LOCATION
PERHAPS FOR MEDICAL TESTS MANY
OF THE HOUSING -- SUCH AS HOTELS
AND AIRFARE AND TRAVEL COSTS CAN
BE SOCIOECONIMICALLY
PROHIBITIVE.
>> THANK YOU, KATE.
AND I KNOW THAT DOLL RAISED
EARLIER SOME OF THE CHALLENGES
WITHIN THE NAVAJO NATION IN THAT
THERE ARE COMMUNITIES THAT HAVE
NOT HEARD ABOUT ANY OF THE
RESEARCH.
SO I KNOW THAT THE EFFORTS, WE
THANK HER AND THE NAVAJO NATION
COUNCIL FOR SHARING THAT
INFORMATION WITH THE COMMUNITY.
AND ALSO HIGHLIGHTS ONE OF THE
THINGS THAT NOT TO PUT IT ON
JOAQUIN ON YOUR TO-DO LIST --
>> DOLORES SHARED HER CONTACT
INFORMATION AND WE'RE ON IT
>> NO PRESSURE.
>> AND I WAS NOT SURE IF THERE
WERE OTHER FAMILY MEMBERS WHO
WANTED TO SHARE SOME OF THEIR
EXPERIENCE.
I KNOW DR. TORRES OR MR. TORRES
MENTIONED THAT THOSE WITH LOWER
SOCIOECONOMIC POPULATIONS WERE
NOT REPRESENTED
>> THANK YOU.
I HAVE TO SAY THAT THE PRINCIPLE
INSTITUTION OR ORGANIZATION DOWN
HERE IN PUERTO RICO TO PERFORM
RESEARCH -- THE ENVIRONMENT OF
HEALTH AND WHEN THEY DO OR
PERFORM A STUDY THEY INCLUDE ALL
OF THE PERSONS WITH
DISABILITIES.
NOT NECESSARILY FOR DOWN
SYNDROME.
THAT MEANS THAT THE RESULTS ARE
A GROUP OF CONDITIONS.
AND THE RESULT USED BY OTHER
INSTITUTIONS SUCH AS THE
DEPARTMENT OF EDUCATION IN WHICH
THEY APPLY OKAY DATES BASED ON
GENERAL DISABILITY.
AS A WHOLE.
NOT NECESSARILY AS A DOWN
SYNDROME POSITION.
7 AND WHEN WE GO TO SCHOOLS --
WE RECEIVE SOME TREATMENT, WE
RECEIVE SOME EDUCATION.
HIGHLIGHTS THAT ARE NOT
NECESSARILY DIRECTOR OUR
POPULATION.
HOW CAN WE DEAL WITH THAT?
SOME INSTITUTION OR GROUP LIKE
US LOOK FOR OTHERS STATISTICS
THAT COME FROM THE MAINLAND THAT
IS NOT REPRESENTING OUR LATINO
COMMUNITY OUR ISLAND CONDITION.
THAT MEANS THAT WE NEED TO FOCUS
ON DOWN SYNDROME RESEARCH PER
SAY.
NOT AS A WHOLE DISABILITY.
GROUP.
>> IF YOU DON'T MIND I WOULD
LIKE TO SHARE THAT THE INCLUDED
COORDINATING CENTER WILL BE IN
SAN JUAN ON OCTOBER 25th.
THE CONFERENCE THAT YOU MAY BE
FAMILIAR WITH.
WILL BE THERE AND MAYBE WE CAN
CONNECT THERE AS WELL AND SHARE
MORE ABOUT THE RESEARCH
>> I RECEIVED THIS NOTIFICATION
AND I WILL BE THERE.
I WILL MAKE ALL OF THE
ARRANGEMENTS TO ATTEND THIS.
THANK YOU.
>> THAT IS EXCELLENT.
I DON'T KNOW IF ANY OF THE OTHER
FAMILY MEMBERS HAVE INPUT?
BUT IF NOT WE CAN GO TO THE NEXT
QUESTION AND THIS IS FOR THE
RESEARCHERS.
>> I HAVE A QUESTION.
I HAVE A QUESTION.
>> ABSOLUTELY.
>> THAT I HAVE BEEN PUTTING IN
THE CHAT.
I WOULD LIKE TO KNOW MY NAME IS
-- RAMOS AND I AM FROM PUERTO
RICO.
I HAVEI HAVE DAUGHTER WITH DOWN
SYNDROME AND THE QUESTION IS HOW
MANY FAMILIES OR PEOPLE WITH
DOWN SYNDROME IN TERMS OF
PERCENTAGE ARE IMPACTING IN THE
U.S. AND SPECIFICALLY IN PUERTO
RICO?
IF THERE IS A NUMBER.
>> THE POPULATION.
I BELIEVE THAT INFORMATION MAY
BE AVAILABLE ON DS CONNECT BUT
WE ARE MORE THAN HAPPY TO
FOLLOW-UP WITH YOU.
US PERSONALLY DON'T KNOW THE
NUMBER OFFHAND HOWEVER WE'RE
MORE THAN HAPPY TO FOLLOW-UP AND
SHARE THAT INFORMATION WITH YOU
IF YOU WOULD LIKE.
>> THANK YOU.
>> ABSOLUTELY.
I SEE THAT YADIRA HAS HER HAND
RAISED.
DO YOU HAVE ANY FEEDBACK FOR
THIS QUESTION?
MAYBE IT WAS AN EXCELLENT.
SO THEN WE'LL GO TO THE NEXT
SLIDE IF WE MAY.
FOR THE RESEARCHERS.
SO THIS QUESTION: AND I'LL OPEN
IT UP TO THE GROUP.
WHAT CAN HELP, WHAT DO YOU THINK
CAN HELP FACILITATE
PARTICIPATION IN CLINICAL
RESEARCH BY PEOPLE IN UNDER
REPRESENTED AND UNDERSERVED
COMMUNITIES?
DR. TAPIA.
>> THANK YOU.
IT'S THE FLEXIBILITY BECAUSE
FAMILIES ARE CHILDREN WITH DOWN
SYNDROME THEY HAVE SO MANY
COMPETING ACTIVITIES TO DO.
WITH DIFFERENT THERAPIES FOR
EXAMPLE.
IF COMMUNITIES THAT ARE
UNDERSERVED THAT ADDS AN
ADDITIONAL LAYER OF COMMITMENTS.
THEY MAY HAVE TWO OR THREE JOBS
AND IT MAY BE ONEROUS TO TAKE A
DAY OFF.
SO I WOULD GO ALONG THOSE LINES.
REIMBURSEMENT NEEDS TO BE
REALISTIC TO COMPENSATE AND
MAYBE THAT THEY NEED TO PAY
SOMEONE ELSE TO LOOK TO THEIR
OTHER KIDS AT HOME WHILE THEY
ARE WITH US COMPLETING A TASK.
SO THAT IS SOMETHING THAT WE
NEED TO BE COGNIZANT ABOUT.
>> TAKING IN THE WHOLE FAMILY
AND NOT JUST THE INDIVIDUAL AND
THE CARE GIVER.
DR. ESPINOZA.
>> FLEXIBILITY AT EVERY STEP OF
THE PROCESS.
ARRANGING FOR PARKING.
CLEAN INSTRUCTIONS ON HOW TO
FIND THE BUILDING.
FLEXIBILITY WITH THE SCHEDULING.
I WOULD LIKE TO ADD TO THAT
INCREASING DIVERSITY IN WHAT I
CALL THE FRONT END OF THE
RESEARCH ENTERPRISE.
THE COORDINATION TEAM.
AT THE END OF THE DAY IT IS THE
CLINICAL COORDINATORS TALKING TO
THE FAMILIES AND COMPARING
CALENDARS AND ARRANGING TRAVEL.
IF THE APPOINTMENT CANNOT BE MET
RESCHEDULING.
IT'S IMPORTANT THAT WE THE
SCIENTISTS DO OUR BEST EFFORT TO
MAKE SURE THAT THAT TEAM THE
TEAM THAT WILL BE INTERACTING
WITH THE FAMILIES AND COMMUNITY
IS DIVERSE.
BY LINGUAL IF POSSIBLE OR OTHER
FORMS OF DIVERSITY TO FACILITATE
THAT REPORT WITH THE RESEARCH
PARTICIPANTS.
>> GREAT POINT.
PARTICIPANT --
>> I THERE ARE SAID THIS EARLIER
BUT I WANT TO REPEAT IT.
I WANT TO AGREE WITH DR. TAPIA
AND DR. ESPINOZA.
AND THEN I WANT TO SAY AS A
CLINICIAN RESEARCHER MY HEAD IS
UNDERWATER TRYING TO SOLVE REAL
PROBLEMS FOR FAMILIES EVERY DAY.
REALLY TRYING TO * REMOVE
BARRIERS THAT OUR UNDERSERVED
COMMUNITIES ARE FACING EVERY DAY
WHETHER IT'S ACCESS TO
APPROPRIATE EDUCATIONAL
SERVICES, DISABILITY BENEFITS.
WHATEVER ELSE.
SO, ITS HARD FOR ME TO LIFT MY
HEAD ABOVE WATER TO LOOK FOR THE
RIGHT RESEARCH GRANT TO FIND THE
RIGHT CLINICAL COORDINATOR TYPE
POSITION TO PUT IN PLACE MY
GRAND RESEARCH IDEA AND YET I
KNOW THAT MY PATIENTS WITH DOWN
SYNDROME WHO ARE BLACK WHO ARE
SPANISH SPEAKING, WHO ARE ASIAN
AND SPEAK ALL KINDS OF DIFFERENT
LANGUAGES I DON'T HAVE NATIVE
AMERICAN PATIENTS WITH DOWN
SYNDROME AT THIS TIME.
YOU I HAVE ARABIC SPEAKING
PATIENTS.
THIS HUGELY DIVERSE -- PATIENTLY
POPULATION THAT WOULD BE ENGAGED
IN RESEARCH WERE I HAVE TO
SUPPORT.
YES INCLUDE.
THE HUMAN TRIZOME PROJECT.
IF YOU WANT TO REACH * THOSE
FAMILIES FROM THOSE UNDERSERVED
BACKGROUNDS YOU MUST SUPPORT THE
CLINICAL PROGRAMS THAT SUPPORT
THEM.
THAT IS WHAT I THINK IS REALLY
GOING TO FACILITATE DIVERSE
PARTICIPATION IN CLINICAL
RESEARCH.
SUPPORTING THE PROGRAMS THAT
HELP THOSE FAMILIES DAY IN AND
DAY OUT SO THAT WE CAN THEN
FACILITATE THAT KIND OF
PARTICIPATION.
>> THAT'S AN EXCELLENT POINT.
DR. McCORMICK.
>> AND I'LL ADD ANOTHER
PERSPECTIVE TO JUST THINKING
ABOUT OFTEN WHEN WE AS
CLINICIANS ARE THINKING ABOUT
RESEARCH IDEAS WE'RE BASING IT
ON OUR EXPERIENCE.
WHAT ARE THE THINGS THAT WE'RE
SEEING THAT SEEM TO BE IMPORTANT
FROM OUR PERSPECTIVE?
AND IF WE FLIP IT WE START
ASKING COMMUNITIES IN OUR
UNDERSERVED COMMUNITY.
WHAT ARE THE IMPORTANT PROBLEMS
TO THEM AND HOW CAN WE
COLLABORATE AND PROVIDE
SOLUTIONS.
THE FIRST THING THEY DID IN THE
PITTSBURGH STUDY IS THEY GOT
COMMUNITY PARTNERS TOGETHER AND
CREATED A CONSENT MAP OF WHAT
DOES THRIVING MEAN TO THE
COMMUNITY.
WE NEED TO FLIP THE SCRIPT ON
HOW WE DEVELOP RESEARCH IDEAS
AND DEVELOP RESEARCH NEEDS AND
ASK OUR COMMUNITIES WHAT ARE THE
THINGS THAT ARE IMPORTANT TO
THEM BEFORE WE START THINKING
FROM OUR AGENDA OF WHAT MAKES
SENSE TO US?
THOSE ARE IMPORTANT THINGS TOO
T. WE HAVE EXPERTISE BUT WE'RE
NOT THE ONES LIVING IN THE
COMMUNITIES *.
NOEMI SAID IT MAY BE ABOUT
ACCESS TO EDUCATION.
MAYBE ABOUT ACCESS TO FINANCIAL
SOURCES AND HOW CAN WE
COLLABORATE.
WE NEED TO THINK DIFFERENTLY
ABOUT WHAT ARE THE GOALS OF
RESEARCH AND WHAT ARE THE
PROBLEMS AND QUESTIONS WE'RE
TRYING TO SOLVE?
>> THANK YOU SO MUCH.
DR. SON.
>> I THINK AS A RESEARCHER WE
NEED TO PROVIDE SUBSTANTIAL
OUTCOMES TO THE PARTICIPANTS.
BECAUSE THE PARTICIPANTS THEY
ARE SPENDING LOTS OF TIME AND
EFFORTS TO PARTICIPATE IN
CLINICAL RESEARCH.
THEY DO NOT SEE THE CLEAR
OUTCOMES IT WILL REDUCE THEIR
MOTIVATIONS FOR PARTICIPATING
IN FUTURE STUDIES.
I KNOW THAT MANY RESEARCHERS ARE
TRYING THEIR BEST TO PROVIDE THE
BEST POSSIBLE OUTCOMES TOWARD
THE POPULATION BUT SOMETIMES THE
COMMUNICATION IS NOT CLEAR AND
THEN THE PARTICIPANTS ARE STILL
THINKING THEY ARE JUST DOING IT
FOR THEIR RESEARCH.
IF THEY HAVE THAT KIND OF
MIND-SET BASED ON REPEATED
EXPERIENCES WORKING WITH THE
RESEARCHERS IT'S NOT GOING TO
WORK WITH FUTURE PARTICIPATION.
SO I THINK USING THEIR OWN
LANGUAGE IT'S NOT USING MEDICAL
TERMS BUT MAKE IT MORE
ACCESSIBLE TO UNDERSTAND THE
CONCEPTS OF THE OUTCOME BASED ON
THE RESEARCH PARTICIPATION AND
HOW IT WILL BE EFFECTING THEIR
WHOLE COMMUNITY NOT JUST FOR
INDIVIDUALS.
IT WILL CREATE A SENSE OF
COMMUNITY SO I THINK IN THAT WAY
THEY WOULD BE MORE WILLING TO
PARTICIPATE IN THE CLINICAL
RESEARCH.
>> THAT IS A GREAT POINT
ENVELOPE TERMS OF IDENTIFYING
WITH THE FAMILIES AND THE
INDIVIDUALS WHO ARE THE BENEFITS
NOT ONLY FOR THEY THEMSELVES BUT
PERHAPS LONG-TERM FOR THE
SCIENTIFIC AND RESEARCH
COMMUNITY.
IF WE CAN GO TO THE NEXT SLIDE
BECAUSE I WANT TO MAKE SURE WE
HAVE ENOUGH TIME FOR THIS
QUESTION.
AND I BELIEVE IT'S ONE MORE
SLIDE.
SO THIS IS THE CRUX OF WHY WE'RE
HERE.
AND THIS IS A QUESTION FOR OUR
FAMILIES IN TERMS OF HOW IS IT
THAT YOU THINK WE CAN BUILD
TRUST WITHIN YOUR COMMUNITY?
WE'VE HEARD A LOT OF FEEDBACK SO
FAR BUT I WILL TURN IT TO YADIRA
TO START US OFF WITH THIS
QUESTION.
>> YOU'RE MUTED.
>> OKAY.
MAKE SURE -- INCLUDING -- SO
THAT --
>> I THINK THAT IS SUCH A
CRITICAL POINT.
IT IS IMPORTANT THAT OUR
WEBSITES AND WHATEVER
INFORMATION THAT WE MAKE
AVAILABLE IS TRANSLATED INTO
DIFFERENT LANGUAGES.
THAT IT'S ABOUT REACHING THE
FAMILIES AND ALSO THE
INDIVIDUALS THAT THEY ARE ABLE
TO EDUCATE THEMSELVES.
THAT IS A GREAT POINT.
TAYLOR.
>> FIRST THING THAT MATTERS,
MAKE SURE THAT THE -- DOWN
SYNDROME COMMUNITY THAT IS USING
IN RESEARCH LIKE GLOBAL AND ONLY
THE RESEARCH TEAM --
>> THANK YOU, TAYLOR.
THAT IS A GREAT POINT AND I
THINK THAT JOAQUIN ALSO
MENTIONED THAT IS THE IMPORTANCE
OF REPRESENTATION IN THE
COORDINATORS AND THE TEAM THAT
IS INVOLVED IN OUTREACH.
DOLORES.
>> YES.
I BELIEVE AND THE RURAL AREAS
BECAUSE AGAIN BUILDING THAT
TRUST AND RELATIONSHIP WITH
FAMILIES BECAUSE WHEN YOU BRING
IN NEW INFORMATION THEY ARE NOT
REALLY QUITE SURE WHAT IS GOING
TO BE HAPPENING, WHAT IS GOING
ON.
AND I WANT TO MAKE A COMMENT --
WITH THE PREVIOUS PERSON THAT
MADE THE COMMENT ABOUT TRYING TO
SOLVE REAL PROBLEMS AND THAT IS
TRUE BECAUSE IN RURAL AREAS IT'S
LIMITED SERVICES WHETHER IT'S IN
THE SCHOOL SYSTEM OR ADULT
SERVICES AND FAMILIES ARE JUST
TRYING TO GET THROUGH THE DAY
WITH THEIR FAMILY MEMBER WHO HAS
DOWN SYNDROME OR OTHER
DISABILITIES.
AND WANTING TO KNOW WHO, WHAT,
WHERE AND HOW AND WHY.
AND THE MAJORITY OF THE
INDIVIDUALS WITH DOWN SYNDROME
WITHIN NAVAJO NATION THAT I KNOW
PERSONALLY THEY ARE NONVERBAL.
IF THEY DO TALK IT'S VERY FEW
WORDS.
AND IT'S DUE TO SPEECH THERAPY.
LIMITED SERVICES.
AND GETTING THAT SUPPORT EARLY
ON FROM EARLY CHILDHOOD THROUGH
THE SYSTEM.
AND MY SON GOT SOME SERVICES
WHEN WAS AN INFANT AND TODDLER
BUT HE SPOKE A LITTLE BIT BUT AS
HE GOT OLDER HE WAS VERY
NONVERBAL.
HE WAS MORE FACIAL EXPRESSION,
POINTING.
AND DOING THINGS FOR HIMSELF.
AND AGAIN IT'S REACHING OUT TO
FAMILIES AND BUILDING THAT TRUST
THAT CONNECTION THAT ONE-ON-ONE
AND LETTING THEM KNOW WHAT IS
COMING UP AND WHAT IS HAPPENING.
I KNOW THAT WHAT I HAD DONE WITH
THE FAMILIES --
>> THANK YOU AND WE APOLOGIZE
FOR THAT SLIGHT INTERRUPTION.
I DIDN'T WANT TO CUT YOU OFF IF
YOU WERE NOT DONE.
THANK YOU SO MUCH.
I APPRECIATE THAT.
MS. NEAL-HOWE.
>> HI, EVERYONE
SO YEAH AND I'M GOING TO USE
SOME EXISTING COMMUNITY MODELS.
THERE IS SOME EFFORTS OUT THERE
ALREADY THAT ARE DOING SOME
THINGS GOOD AND I'M GOING TO
POINT OUT BREAST CANCER.
WE SEE A LOT OF ACTIVITY AROUND
BREAST CANCER IN VARIOUS
COMMUNITIES AND THEY WORK.
THEY WORK.
I SEE THESE BREAST CANCER WALKS
BEING VERY DIVERSE.
OF COURSE IT'S GOING TO BE
SKEWED ONE WAY OR ANOTHER
DEPENDING ON WHERE THE WALK IS.
RIGHT?
BUT FROM WHAT I'VE SEEN AND WHAT
I'VE EXPERIENCED THEY SEEM TO BE
VERY DIVERSE AND WHAT THEY'VE
DONE IS THEY'VE DEVELOPED
CHAMPIONS WITHIN THE
COMMUNITIES.
THESE ARE VOLUNTEERS A LOT OF
THEM.
THEY ARE NOT PAID BUT I THINK
THERE IS A SENSE OF WHAT IS IN
IT FOR ME?
AND THEY ARE GETTING THAT
PERSONAL SATISFACTION.
WE'VE GOT TO MEET PEOPLE THERE
AS WELL AS WHAT OTHERS SAY
BEFORE ME.
MEET THE BASIC NEEDS FIRST.
IF FOLKS ARE NOT GETTING THE
SPEECH THERAPY SERVICES -- THAT
IS A BASIC NEED I THINK.
ESPECIALLY WHEN THERE ARE SOME
OF US THAT HAVE BEEN FORTUNATE
ENOUGH IN THAT WE HAVE ACCESS TO
SERVICES.
I WOULD LIKE TO SEE THE
RESEARCHERS SUPPORT SOME OF THE
EFFORTS THAT ARE ALREADY IN THE
COMMUNITY WHETHER IT'S
PEDIATRICIANS, THE DOWN SYNDROME
CLINICS, THE CHURCHES.
WHATEVER IS IN THE COMMUNITY
THAT PEOPLE ALREADY TRUST,
PARTNER WITH THEM.
I'M BIG ON COLLABORATION.
HUGE ON PARTNERSHIP AND I THINK
YOU COULD GET A LOT OUT OF DOING
THAT AND GETTING SOME QUICK --
AND SPEED UP THE TRUST:
>> ABSOLUTELY PARTNERSHIP AND
CONTINUED ENGAGEMENT.
IT DOESN'T STOP AT THAT ONE.
CHIDANAND.
>> THANK YOU.
7 I THINK IT'S ALSO IMPORTANT TO
GET BACK TO CIRCLE BACK TO US
WITH THE OUTCOMES THAT ARE
EASILY UNDERSTANDABLE TO MAKE
SURE THAT OUR TIME IS WELL
SPENT.
WE JUGGLE SO MANY THINGS.
SO PRESSED FOR TIME AND DEVOTE
ONE OR TWO OR THREE HOURS FOR
SUCH INDIVIDUALS.
I ALSO HOPE THE PROGRAM COVER
ALL LEGAL RESIDENTS.
BECAUSE THE SENSE THAT I GOT IS
THAT ANY LEGAL RESIDENT WHO'S A
TAXPAYER SHOULD BE COVERED UNDER
THESE PROGRAMS.
BUT MOST OF ALL IT'S KNOWING
THAT YOUR TIME WAS WELL SPENT
AND THAT IT WAS A GOOD OUTCOME.
GETTING BACK TO US WITH THAT --
WOULD BE GREATLY APPRECIATED.
>> SO DEFINITELY COMMUNICATING
NEEDS AND NOT TO CUT YOU OFF
PLEASE, SORRY
>> I WAS GOING TO ADD TO THAT --
I THINK THE POINT MADE ABOUT
MEETING DIFFERENT SOCIOECONOMIC
NEEDS AS WELL AS LANGUAGE BASED
NEEDS THOSE ARE REALLY CRITICAL.
I SEE WE BELONG TO THE NETWORK
OF MONTGOMERY COUNTY HERE IN
MARYLAND.
AND WE ARE FORTUNATE ENOUGH THAT
IS A VERY DIVERSE GROUP AND IT
HAS A DUAL LANGUAGE PROGRAM SO
THAT IT MEETS HISPANIC NEEDS AND
THE EVENTS ARE COVERING BOTH
SPANISH AND ENGLISH WITH
TRANSLATION HAPPENING
FREQUENTLY.
BUT THAT IS A UNIQUE COMMUNITY
RELATIVE TO WHAT WE SEE AMONG
OTHERS.
NATIONALLY BUT ALSO I THINK THAT
WE SEE EVEN WITHIN OUR VERY --
WELL RESOURCED COMMUNITY -- HIGH
LEVELS OF INEQUALITY AND ACCESS
EVEN IN THE SCHOOL THAT OUR SON
ATTENDS.
AVENUE IF YOU'RE NOT A WELL
RESOURCED SELF-ADVOCATE GETTING
THE LEVELS IN ACCESS THAT YOU
NEED ARE REALLY CHALLENGING.
SO WE SEE IT AT CLINICS WITH OUR
SON.
WE SEE IT WHEN HE GOES TO
SCHOOL.
WHEN PEOPLE ARE ABLE TO ADVOCATE
FOR THEMSELVES THEY GET THE
RESOURCES THEY NEED BUT WITHOUT
PROVISION AND EXTRA SUPPORT
SUPPLIED TO SCHOOLS AS WELL AS
TO CLINICS TO HELP REACH UNDER
SERVED POPULATIONS I THINK THEY
GET LEFT OUT.
I'M ALSO A SENIOR EDUCATION
SPECIALIST WITH THE WORLD BANK
AND WE STRUGGLE WITH SOME OF THE
SAME ISSUES.
WE HAVE DISABILITY AND INCLUSION
PRACTICE.
AND AS OF THIS YEAR WE'RE IN LOW
AND MIDDLE INCOME COUNTRIES ARE
REQUIRED TO HAVE A SPECIAL
MANDATE OR SPECIAL COMPONENT
FOCUSED ON DISABILITY AND
INCLUSION.
AS INDIVIDUALS WHO DESIGN THESE
OPERATIONS WE OFTEN DON'T KNOW
WHAT WE'RE DOING AND WE HAVE TO
PULL ON RESEARCH FROM VARIOUS
COMMUNITIES.
I THINK THERE IS A LOT OUT THERE
ON SERVICING COMMUNITIES IN
SOCIOLOGY AND IN THE PSYCHOLOGY
LITERATURE AND IN TERMS OF
GETTING ACCESS TO SERVICES AND I
THINK THERE IS A LOT OF CROSS
DISCIPLINARY RESEARCH THAT CAN
BE DONE THERE.
>> THAT IS A GREAT POINT AND I
THINK IT REINFORCES WHAT
SHAUNTEL MENTIONED.
WHERE WE SEE IT SUCCESSFULLY
APPLIED.
KATE.
>> THANK YOU.
I THINK ONE OF THE THINGS THAT
WHEN WE LOOK AT BUILDING TRUST
WITHIN COMMUNITY AND I'M GOING
TO TRY TO SPEAK SLOW FOR THE
INTERPRETERS IS UNDERSTANDING
MANY OF OUR PEOPLE IN RURAL AND
UNDERSERVED COMMUNITIES ARE
DEALING WITH I WOULD CALL A
COLLECTIVE TRAUMA BECAUSE OF
BASED ON THEIR EXPERIENCES THAT
THEY ARE GETTING AT AN EDUCATION
LEVEL AND MEDICAL LEVEL THROUGH
CLINICIANS AND EDUCATORS
ESSENTIALLY LACK OF EXPOSURE AND
WHEN YOU ASK WHAT I MEAN BY
THAT?
WHEN YOU HAVE AS A PARENT PEOPLE
SAY TO YOU THINGS LIKE FROM A
MEDICAL PROFESSIONAL IT'S JUST
DOWN SYNDROME.
7 OR WHEN YOU HAVE AN EDUCATOR
SAY TO ME AND TALKING UNIVERSAL
DESIGN OF LEARNING OR
ACCOMMODATIONS AND THEY SAY YOU
EXPECT ME TO DO THIS FOR JUST
ONE CHILD.
NO.
I EXPECT YOU TO DO THIS FOR
EVERY CHILD: OR WHEN THEY SAY
WHAT WAS BEST PRACTICE ANY WAY?
THESE ARE THINGS THAT PEOPLE IN
YOUR RURAL AND UNDERSERVED
COMMUNITIES ARE SEEING ON A
DAILY BASES SO WHEN WE COME IN
PROFESSIONALLY WHETHER IT'S
ACADEMIC OR MEDICAL RESEARCH
OPPORTUNITY AND WE SUDDENLY WANT
THEM TO PARTICIPATE WE FIRST
HAVE TO AGAIN BUILD THAT TRUST
AND ONE OF THE THINGS THAT I
WILL SAY AND THANK YOU
DR. McCORMICK FOR COMING TO MY
COMMUNITY.
THANK YOU SHAUNTEL FOR COMING TO
MY COMMUNITY.
THANK YOU JOAQUIN FOR COMING TO
THE NAVAJO NATION BECAUSE ONE OF
THE FIRST THINGS, I UNDERSTAND
IT'S IMPOSSIBLE TO VISIT EVERY
UNDERSERVED COMMUNITY BUT WE
COMMUNICATE AMONG EACH OTHER AND
WE DO BEGIN TO SHARE THAT OUT
AND ONE OF THE BEST WAYS SINCE
WE'RE DEALING WITH THAT
COLLECTIVE TRAUMAS WHEN WE GET
AN OPPORTUNITY TO MEET A
DR. ANDY McCORMICK OR A
JOAQUIN ESPINOZA.
IT DOES MAKE A DIFFERENCE
BECAUSE WHEN YOU'RE LIVING IN AN
UNDERSERVED AREA OR RURAL
POPULATION AND THE DIE AT
NARRATIVE IS SO LIMITED *
BECAUSE OF LACK OF AWARENESS OF
POSSIBILITIES FOR INDIVIDUALS
WITH DOWN SYNDROME IT CAN BECOME
OVERWHELMING FOR MANY, MANY
PEOPLE AND THAT HINDERS THEIR
ABILITY BUT IT IS POSSIBLE TO
REBUILD THAT BRIDGE OF TRUST BY
HELPING THEM KNOW THERE IS A
LARGER COMMUNITY OUT THERE THAT
TRULY DOES UNDERSTAND WHAT BEST
PRACTICE.
THAT UNDERSTANDS EACH MEDICAL
COMPONENT OF DOWN SYNDROME IS
UNIQUE TO EACH INDIVIDUAL WITH
DOWN SYNDROME.
AND I THINK THOSE THINGS TRULY
BEGIN TO HELP EXPONENTIALLY.
AVENUE ACTUALLY I KNOW IT DOES
BECAUSE FOR THE LAST 12 YEARS
I'VE SEEN THE DIFFERENCE THAT
MANY PEOPLE HAVE MADE BECAUSE
WE'VE MANAGED TO GET THEM INTO
OUR RURAL COMMUNITY AND BEGAN TO
ALTER THE DIALOGUE.
>> THANK YOU SO MUCH.
AND I SEE DR. CHAPLAIN HAS MADE
A COUPLE OF COMMENTS.
BEFORE I GO ON TO THE
RESEARCHERS -- THE QUESTION IS
SIMILAR.
DR. CHAPLIN IF YOU WOULD LIKE TO
SAY SOMETHING OUT LOUD
>> I WOULD LIKE TO MAKE THE
POINT THAT WHAT IS CRUCIAL IS
NOT TO EXPECT THAT YOU CAN GO TO
A COMMUNITY AND SAY WE WANT YOUR
TRUST.
AND WE CAN BE TRUSTED.
IT TAKES YEARS TO DEVELOP TRUST.
YOU HAVE TO HAVE PERSEVERANCE
AND PATIENCE AND YOUR NEED TO
ENSURE THAT EARLY ON YOU ADDRESS
QUESTIONS THAT THE COMMUNITY
THINKS ARE IMPORTANT TO ADDRESS.
LET THEM DRIVE SOME OF THE EARLY
PARTS OF THE RESEARCH PROGRAM.
SPEND LOTS OF TIME AND GET TO
KNOW MEMBERS OF THE COMMUNITY SO
THEY CAN DEVELOP TRUST IN YOU
AND BE SURE TO INCLUDE MEMBERS
OF THE COMMUNITY IN THE CORE OF
YOUR RESEARCH TEAM SO THAT THEY
ARE IN FACT PART OF THE PROGRAM.
THIS COMES FROM MY YEARS ON THE
FACULTY AT THE UNIVERSITY OF
ALABAMA AT BIRMINGHAM WHICH HAS
HAD A SUCCESSFUL MINORITY HEALTH
RESEARCH PROGRAM.
BUT A SUCCESSFUL ONE THAT IS
BASED ON YEARS OF WORKING WITH
THE COMMUNITY AND INVOLVING
PEOPLE FROM THE COMMUNITY.
AND THE RESEARCH PROCESS AND
BEING SURE THAT THE RESEARCH
TEAMS REALLY HAVE A SUBSTANTIAL
NUMBER OF PEOPLE THAT LOOK LIKE
AND SPOKE LIKE THE PEOPLE THAT
ARE THE RESEARCH SUBJECTS
>> GREAT POINT.
MAKING SURE THAT REPRESENTATION
IS NOT ONLY AND I THINK THIS IS
THROUGHOUT TODAY'S WORKSHOP AND
SOMETHING THAT WE'VE HEARD MANY
TIMES IS THE STUDY PARTICIPANTS
SHOULD LOOK LIKE THE STUDY
RESEARCH TEAM AS WELL.
AND VICE VERSA.
DO WE HAVE ANY OTHER?
>> YES.
HOW CAN WE BUILD TRUST?
EVERYONE HERE AGREED THAT SHOULD
BE CONDUCTED ANY RESEARCH SHOULD
BE CONDUCTED IN THEIR NATIVE
LANGUAGE.
IN OUR CASE SHOULD BE CONDUCTED
IN SPANISH.
ALSO SHOULD BE CLEAR.
THE OBJECTIVE SHOULD BE CLEAR
AND THE RESULTS SHOULD BE
AVAILABLE FOR THE COMMUNITY.
AND ALSO WITH RESPECT TO THE
AUDIENCE AND ALL OF THE PEOPLE
ON THE PANEL AND I WOULD LIKE TO
COMMENT THAT PUERTO RICO HAS
BEEN USED IN THE PAST FOR
TESTING AND IT'S EMBEDDED IN THE
MIND OF SOME PERSON AND WHEN A
RESEARCH STARTED ON OUR ISLAND
THE OBJECTIVES SHOULD BE CLEAR.
AND THE PURPLES SHOULD BE CLEAR
AND EVERYONE UNDERSTANDS THAT WE
WILL HAVE SOME BENEFIT FOR OUR
COMMUNITY.
AND IT'S NOT ONLY HERE, THE
STUDY SHOULD BE CONDUCTED IN
OTHER PLACES IN THE SAME WAY.
THAT WILL BE CONDUCTED RIGHT
HERE.
AND AS A FINAL COMMENT I WILL
SAY THAT AS A LATINO MOTHERS ARE
VERY IMPORTANT PERSON IN THE
EDUCATION OF HAVE OUR CHILD IN
THE HEALTH AND IN THE FEELINGS.
THIS IS A MESSAGE FOR THE
RESEARCHERS THAT YOU SHOULD TAKE
CARE OF MOTHERS IN EVERY
RESEARCH IN THE LATINO
COMMUNITY.
THEY ARE THE PRINCIPLE AND THE
MOST IMPORTANT PERSON IN ONE
DOWN SYNDROME PERSON.
THANK YOU.
>> THANK YOU.
I APPRECIATE IT.
SO WE'LL GO TO THE NEXT SLIDE.
AND THIS WILL BE THE QUESTION
AND I BELIEVE THE FINAL QUESTION
FOR THE RESEARCHERS.
AND THEN WE'LL DEFINITELY OPEN
IT UP TO THE LARGER GROUP IF
THERE ARE OTHER COMMENTS OR
FEEDBACK OR POINTS THEY WOULD
LIKE TO SHARE.
>> HEY, ERIKA --
>> WAS THAT THE LAST SLIDE.
>> NO WORRIES.
I'LL ASK THE SAME QUESTION.
WE'LL USE THE SAME QUESTION TO
OUR RESEARCHERS.
AND I KNOW A LOT OF THIS HAS
BEEN SAID ALREADY.
SO IF THERE IS ANYTHING NEW THAT
YOU WOULD LIKE TO ADD THAT YOU
THINK THERE ARE WAYS THAT WE CAN
BUILD TRUST WITHIN THE COMMUNITY
AND THE COMMUNITY IN THIS CASE
MAY ALSO EXTEND TO THE RESEARCH
COMMUNITY.
DR. SPINAZZI.
>> SHOW UP TO YOUR COMMUNITY
JUST LIKE YOU'RE INVITING THEM
TO SHOW UP FOR OUR RESEARCH
EFFORTS.
TAKE TIME TO HOLD EDUCATIONAL
OPPORTUNITIES.
WHETHER IT'S Q&A ON HEALTH
ISSUES OR EDUCATIONAL ISSUES.
I GO TO MY PATIENT'S IP MEETINGS
AND THAT MEANS SO MUCH BECAUSE
THEY KNOW I'M IN THEIR CORNER
NOT JUST FROM A MEDICAL
STANDPOINT.
I NEVER FILL OUT A FORM THAT HAS
TO DO WITH VISIBILITY BENEFITS
WITHOUT ATTACHING A LONG LETTER
THAT INCREASES THEIR CHANCES OF
GETTING THE BENEFIT.
SHOWING UP FOR THEM IN THESE
WAYS MEANS THAT THEY ARE MORE
LIKELY TO TRUST THAT WE'RE NOT
THERE TO USE THEM.
RIGHT?
YOU'RE NOT THERE TO USE THEM AND
ABUSE THEM THE WAY THAT
UNDERSERVED COMMUNITIES HAVE
BEEN USED AND ABUSED BY RESEARCH
IN THE PAST.
WHEN IT FEELS APPROPRIATE I TALK
ABOUT SYSTEMATIC RACISM IN MY
VISITS AND I ASK QUESTIONS ABOUT
HOW THEIR EXPERIENCE IS AROUND
INTERFACING WITH THE HEALTH
SYSTEM, THE EDUCATIONAL SYSTEM
AND I THINK THAT IS SO NECESSARY
TO EVEN BROACH CONVERSATIONS
AROUND RESEARCH.
BECAUSE NOT EVEN TOUCHING THAT
POINT WHEN THIS IS SUCH A HUGE
REASON FOR NOT HAVING TRUST IN
THE RESEARCH PROCESS IS KIND OF
NOT ADDRESSING THE ELEPHANT IN
THE ROOM.
AND ONE THING THAT HAS BEEN SAID
OVER AND OVER IS THAT
LONGITUDINAL RELATIONSHIP.
THIS IS NOT A ONE AND DONE.
MOST OF US DON'T TRUST SOMEONE
WE'VE JUST MET.
WE TRUST PEOPLE BECAUSE OF THOSE
ONGOING RELATIONSHIPS THAT BUILD
THAT KIND OF TRUST.
SO ANYTHING THAT IS A TOUCH AND
GO, LET ME USE YOU FOR DATA AND
THEN LEAVE IS NOT AS SUCCESSFUL.
AND LAST, LAST, IF ANY RESEARCH
HAS TO DO WITH ANY SORT OF
INTERVENTION, SERVICE, WE NEED
TO NOT ONLY SHARE BACK THE
RESULTS BUT THEN ADVOCATE HARD
FOR WHATEVER THAT SERVICES THAT
HAS BEEN PROVEN TO WORK TO BE
THEN AVAILABLE TO THE PATIENT
THROUGH INSURANCE COVERAGE AS
OPPOSED TO BEING SOME MAGICAL
UNICORN THING THAT THEY CAN ONLY
GET THROUGH RESEARCH.
IF I PROVE THAT ACCESS TO AUGUST
MEN STATE I HAVE COMMUNICATION
FOR SOMEONE WITH DOWN SYNDROME
INCREASES THEIR EXPRESSIVE
ABILITIES AND THEIR BEHAVIOR AND
WHATEVER ELSE AND THEIR
WELL-BEING IF I PROVE THAT THEN
I BETTER SHOW UP AND GO TO BAT
FOR MY PATIENTS TO MAKE SURE
THAT THIS IS SOMETHING THAT THEY
CAN ACTUALLY GET.
WHETHER IT'S THROUGH INSURANCE
OR THROUGH THE SCHOOL.
AS OPPOSED TO RIGHT NOW THE
NERVE STIMULATOR IF IT'S NOT
THROUGH INSURANCE IF YOU HAVE
MEDICAID YOU'RE NOT GOING TO GET
IT AND THAT IS SO DISAPPOINTING.
SO BALANCING THE RESEARCH
FINDINGS WITH THE ADVOCACY TO
MAKE SURE THAT WE DON'T JUST
KNOW ABOUT SOMETHING THAT IS
HELPFUL, WE HAVE ACCESS TO IT,
TOO.
>> GREAT POINT.
LOOKING AT ALL TIERS AND ALL OF
THE PLAYERS INVOLVED.
NOT JUST THE RESEARCH COMMUNITY.
DR. ESPINOZA.
>> I SECONDED EVERYTHING THAT
NOEMI JUST SAID.
EFFECTIVE COMMUNICATION.
7 SO DIFFICULT FOR A SCIENTIST
TO BREAK DOWN THE CONCEPTS TO A
LEVEL THAT IS UNDERSTANDABLE.
WE WANT TO -- HAVE ENTHUSIASM
AND EXCITEMENT BUT WE SHOULD BE
CAUTIOUS NOT TO OVER PROMISE OR
EXAGGERATE.
SO VERY DIFFICULT TO FIND
MATERIAL THAT MEETS ALL OF THIS.
WE NEED TO HAVE LANGUAGE WITH
THUMB AND BE CAUTIOUS THAT WE'RE
NOT OVER PROMISING OR GENERATING
FALSE EXPECTATIONS.
SO I THINK ALL COULD TAKE HOURS
OF OUR BUSY SCHEDULE TO PRACTICE
AND THINK DEEPLY ABOUT OUR
COMMUNICATION MATERIAL
>> GREAT POINT.
THANK YOU.
DR. SON.
>> BEING A GENUINE FRIEND IS THE
KEY TO BUILD THE TRUST WITH THE
COMMUNITY.
BECAUSE PERSONALLY I DON'T --
HAVE A CHILD WITH -- SYNDROME SO
WHEN I GO TO THE COMMUNITY THEY
ASK ABOUT WHY ARE YOU INTERESTED
IN THIS TOPIC AND DO YOU HAVE
ANY CHILD WITH DEVELOPMENTAL
DISABILITIES.
SO I THINK THEY ARE EVALUATING
ME BASED ON MY BACKGROUND.
SO I'M SHARING MY EXPERIENCES AS
A SOCIAL WORKER IN SOUTH KOREA
BECAUSE I WORKED WITH MANY
FAMILIES WHO HAVE CHILDREN WITH
DOWN SYNDROME AND OTHER
DEVELOPMENT DISABILITIES AND I'M
A--SHARING MY EXPERIENCES BECAUI
ENJOY MY TIME WITH THEM AND THAT
IS WHY I BECAME A RESEARCHER.
SO WHEN I SHARE MY PERSONAL
STORIES WITH THEM THEY ARE MORE
OPEN, THEY ARE MORE WILLING TO
OPEN THEIR OWN STORIES.
SO I THINK BEING A GENUINE
FRIEND AND SHOWING YOUR PASSION
ABOUT THE POPULATION, THE
COMMUNITY IS REALLY THE KEY TO
OPEN THEIR MINDS AND SO IN THAT
WAY THEY ARE THEY SAW ME AS A
HUMAN NOT AS A SCIENTISTS OR
JUST A RESEARCHER.
HAVING A GOOD RELATIONSHIP IS --
THE SAME FOR THE COMMUNITY.
THE PROCESS IS THE SAME.
THINK ABOUT THAT IN THE SAME
FRAMEWORK.
NOT JUST FOR RELATIONSHIPS AS A
RESEARCHER AND PATIENTS.
SO IN THAT WAY WE CAN BUILD
STRONG TRUST WITH THE COMMUNITY.
>> EXCELLENT POINT.
THANK YOU SO MUCH.
DR. McCORMICK.
>> YEAH AND I WOULD AGREE WITH
ALL OF THE POINTS THAT HAVE BEEN
SAID BUT ONE THING THAT I WOULD
HIGHLIGHT IS THAT WE ALSO NEED
TO DO WORK ON OURSELVES AS
RESEARCHERS.
AND WHAT I MEAN BY THAT IS THERE
IS DEFINITIVE TRUTH OUT THERE
THAT HISTORICALLY HAS BEEN
ABUSES THAT HAVE BEEN DONE
THROUGH RESEARCH.
IT'S DIFFERENT COMMUNITIES AND
THINKING ABOUT THE STRUCTURAL
DISCRIMINATION AND STRUCTURAL
RACISM.
HE SAID I'M SO TIRED OF WAITING.
AREN'T YOU FOR THE WORLD TO
BECOME GOOD AND BEAUTIFUL AND
KIND.
LET US TAKE A KNIFE AND CUT THE
WORLD IN TWO AND SEE THE WORMS
THAT ARE EATING AT THE RIND.
IN RESEARCH WE OFTEN TRY TO
WE'RE INNOVATIVE AND FINDING NEW
THINGS OUT.
WE'RE OPTIMISTIC BUT IF WE DON'T
REMEMBER THE HISTORY THAT GOT US
HERE WE'RE DOOMED TO REPEAT SOME
OF THESE THINGS.
JUST AS RESEARCHERS WE HAVE TO
DO ALL OF THESE TRAININGS TO
MAKE SURE THAT WE'RE BEING
HUMANE IN OUR RESEARCH.
WE HAVE SHOULD ALSO BE THINKING
ABOUT HOW HAVE WE HISTORICALLY
NOT BEEN HUMANE.
WE CANNOT JUST MOVE PAST THE
PAST.
WE HAVE TO REMEMBER THOSE THINGS
SO WE DON'T KEEP DOING THIS.
WE NEED TO TRAIN TO BE
CULTURALLY HUMBLE.
WE NEED TO TREAT OUR RESEARCHERS
TO SAY HOW DO WE WORK IN
COMMUNITIES?
IT'S IMPORTANT FOR US NOT TO
FORGET THERE IS STILL WORK THAT
WE NEED TO DO ON OURSELVES TO
RECOGNIZE THESE EMBEDDED
PORTIONS.
RACISM AND DISCRIMINATION THAT
EXIST SO WE DON'T REPEAT THEM
>> GREAT POINT AND IT TOUCHES ON
WHAT MR. TORRES MENTIONED AS
WELL WITH REGARDS TO HOW
INDIVIDUALS WITHIN PUERTO RICO
HAVE BEEN TREATED.
SO VERY I KEEP SAYING EXCELLENT
POINT BUT THEY ARE ALL EXCELLENT
POINTS.
AND SO I DON'T KNOW IF THERE
WERE OTHER QUESTIONS?
BUT IF NOT I WANTED TO TAKE THIS
TIME.
I KNOW WE'RE A LITTLE AHEAD OF
SCHEDULE WHICH IS ALWAYS A GREAT
THING TO THANK OUR PANELISTS FOR
AN AMAZING AND VERY ENGAGING
CONVERSATION.
THANK YOU ALL AGAIN FOR YOUR
TIME AND ALSO THANK YOU SUJATA
FOR PARTICIPATING.
WE'RE A FEW MINUTES AHEAD WHICH
I THINK IS OKAY.
SO WE CAN BEGIN TO TAKE OUR
BREAK.
AND IF WE WOULD LIKE TO
RECONVENE SUJATA PLEASE CORRECT
ME IF I'M WRONG AT 2:50.
>> WE'LL TAKE OUR BREAK AND COME
BACK AT 3:00 P.M. EASTERN.
SO PEOPLE CAN HAVE A LITTLE MORE
TIME.
THE PREVIOUS SESSION HAD A SHORT
BREAK.
SO HAVE YOUR COFFEE, TEA, LUNCH
AND WE'LL SEE EVERYONE BACK AT
3:00 P.M. EASTERN TIME.
>> THANK YOU ALL SO MUCH.
WE WOULD LIKE TO INVITE YOU TO OUR
LAST SESSION OF THE DAY
>> FOR THIS SESSION --
>> I CAN START.
IT'S FINE.
>> I THOUGHT YOU WERE GOING TO
INTRODUCE YOURSELF?
>> I AM DR. MARISHKA BROWN.
AND I AM VERY, VERY HAPPY TO BE
MODERATING THIS LAST SESSION.
PARTICULARLY FOCUSED ON THE
RESEARCH ASPECT FOR PERSONS
LIVING WITH DOWN SYNDROME.
BEFORE STARTING I WANT TO THANK
ALL OF THE PANELISTS AND THE
PATIENCE AND PARTICIPANTS AND
THE PATIENT ADVOCATES AND DR.
DR. TARVER DID A GREAT JOB WITH
THE MODERATION.
FIRST WE HAVE DAWN CORBETT.
SHE PROVIDES LEADERSHIP AND
COORDINATION FOR NIH WIDE
EFFORTS TO ENSURE THE INCLUSION
OF WOMEN, RACIAL AND ETHNIC
MINORITIES AND INDIVIDUALS
ACROSS THE LIFE-SPAN IN NIH
DEFINED CLINICAL RESEARCH.
NEXT WE HAVE DR. TRACY ROSSER,
AN ASSISTANT PROFESSOR AT THE
DEPARTMENT OF HUMAN GENETICS AT
EMORY UNIVERSITY WHO LEADS THE
DS360 PROGRAM.
DR. ROSSER RECEIVED HER BS
DEGREE FRAT UNIVERSITY OF
GEORGIA WITH A DOUBLE MAJOR IN
BIOCHEMISTRY AND GENETICS.
SHE COMPLETED HER PhD AT DUKE
AND WAS SUPPORTED AS AN NSF
GRADUATE FELLOW.
CURRENTLY DR. ROSSER IS THE
EMORY PI FOR THE RESEARCH
PROGRAM AND SHE STRIVES TO
ENSURE THAT PARTICIPANT
CONTRIBUTIONS TO RESEARCH ARE
MAXIMIZED TO THE FULLEST
POSSIBLE USE AND WORKS
DILIGENTLY TO SHARE RESULTS WITH
THE LARGER RESEARCH COMMUNITY AS
WELL AS PROVIDE RETURN OF VALUE
TO PARTICIPANTS.
NEXT, WE WILL HAVE BOTH DOCTORS
ANDREA KELLY AND DR. VICTORIA
MILLER.
DR. KELLY IS THE ATTENDING
PHYSICIAN AT THE DIVISION OF
ENDO C NOT GEE AND DIABETES AT
THE CHILDREN'S HOSPITAL.
* SHE HAS LONG-STANDING CLINICAL
RESEARCH AND MORE RECENTLY
ADOLESCENTS OF SOUTH ASIAN
ANCESTRY.
DR. MILLER IS A DIRECTOR OF
RESEARCH AT THE DIVISION OF
ADOLESCENT METH AT THE
CHILDREN'S HOSPITAL OF
PHILADELPHIA AND AN ASSOCIATE
PROFESSOR OF PEDIATRICS MEDICAL
HEALTHICS AND HEALTH POLICY AT
THE UNIVERSITY OF PENNSYLVANIA.
SHE EARNED HER DOCTORATE AND
CLINICAL PSYCHOLOGY IN CASE
WESTERN AND COMPLETED HER
FELLOWSHIP AT CHOP.
SHE IS CURRENTLY THE ETHIC'S
SPECIALIST AND PEDIATRIC
PSYCHOLOGY AND SHE WAS AN
ASSOCIATE EDITOR FOR THE JOURNAL
OF A JOB -.
I KNOW I ABBREVIATED THE BIOS.
ALL CAN BE FOUND ON THE WEBSITE
BUT WE WANT TO BE ABLE TO
DEDICATE TIME TO THE
PRESENTATIONS AS WELL AS THE
DISCUSSION AT THE END.
SO WITH THAT WE WILL START WITH
MS. CORBETT.
>> THANK YOU VERY MUCH.
WILL YOU BE SHARING MY SLIDES?
GREAT.
SO THANKS VERY MUCH FOR THE
INTRODUCTION.
I'M GOING TO BE TALKING A LITTLE
BIT ABOUT ENSURING INCLUSION AND
CLINICAL RESEARCH FROM AN NIH
PERSPECTIVE.
SO I WANT TO START BY SAYING NIH
HAS A LONG-STANDING COMMITMENT
TO INCLUSION IN CLINICAL
RESEARCH.
WE HAVE HAD POLICIES ABOUT THE
INCLUSION OF OUR PARTICIPANTS ON
THE BOOKS SINCE 1986 WHEN NIH
ENCOURAGED INCLUSION OF WOMEN IN
CLINICAL RESEARCH.
CONGRESS PASSED THE
REVITALIZATION ACT IN 1993 SO IT
BECAME PUBLIC LAW THAT NIH
INCLUDE WOMEN AND MEMBERS OF
RACIAL AND ETHNIC MINORITY
GROUPS IN RESEARCH.
IT WAS MADE POLICY 1994 AND THEN
IN 1998 NIH REALIZED THAT
CHILDREN WERE OFTEN EXCLUDED
FROM CLINICAL RESEARCH.
SO THEY ISSUED THE INCLUSION OF
CHILDREN POLICY.
THINGS STAYED STEADY FOR SEVERAL
YEARS.
IN 2015 WE CHANGED THE
DEFINITION OF A CHILD.
PREVIOUSLY DEFINED AS
INDIVIDUALS UNDER 21 AND WE
CHANGE EDIT TO CHILDREN UNDER 18
TO BETTER ALIGN WITH THE AGE TO
CONSENT FOR RESEARCH IN MOST
STATES.
AND THEN IN LATE 2016 THE
21st CENTURY'S CURE ACT WAS
PASSED BY CONGRESS.
NEW REPORTING REQUIREMENTS FOR
NIH DEFINED BASED PRECLINICAL
TRIALS, TO REPORT THE RESULTS BY
SEX OR GENDER, RACE OR ETHNICITY
AND THEN RECENTLY IN 2019 NIH
BEGAN REQUIRING INCLUSION OF
INDIVIDUALS OF ALL AGES.
AS PART OF OUR INCLUSION ACROSS
THE LIFE-SPAN POLICY.
SO I MENTIONED THE 21st
CENTURY CURES ACT WHICH WAS
PASSED IN 2016 AND INCLUDED A
NUMBER OF NEW REQUIREMENTS.
AMONG THOSE WERE THAT NIH
CONVENE A WORKSHOP ON AGE
GROUPINGS AND AGE EXCLUSIONS OF
CLINICAL RESEARCH AND POSE THE
FINDINGS ON THE NIH WEBSITE.
IT ALSO REQUIRED THAT NIH
PUBLISH GUIDELINES ADDRESSING
CONSIDERS OF AGE AND PUBLISH THE
NUMBER OF CHILDREN INCLUDED IN
NIH RESEARCH INCLUDING PEDIATRIC
SUBGROUPS BY RESEARCH CONDITION
OR DISEASE CATEGORY.
SO WE STARTED IMPLEMENTING THE
COUGS ACT IN 2017 -- AND YOU CAN
SEE THAT WE STARTED TO IMPLEMENT
THIS WITH A WORKSHOP TO GET
EXPERTS IN THE FIELD TOGETHER TO
TALK ABOUT CONSIDERATIONS FOR
INCLUSION OF INDIVIDUALS ACROSS
THE LIFE-SPAN.
SO WE HELD A MEETING JUNE
1st AND 2nd, 2017 IN
BETHESDA AND GATHERED A NUMBER
OF PEDIATRICIANS AND RESEARCHERS
AND PATIENT ADVOCATES AND
FEDERAL OFFICIALS AND OTHERS TO
DISCUSS THE CHALLENGES AND
BARRIERS TO INCLUDING CHILDREN
AND OLDER ADULTS IN CLINICAL
TRIALS AND IDENTIFY STRATEGIES
THAT WOULD PRODUCE MORE AGE
INCLUSIVE FOR CLINICAL TRIALS.
WE DID NOT HAVE A LOT OF DATA
ABOUT THE PARTICIPATION BASED ON
AGE.
AND THE OTHER THING THAT BECAME
CLEAR IS THAT OLDER ADULTS
FACEED MANY CHALLENGES TO
INCLUSION IN CLINICAL RESEARCH
SIMILAR TO THE BARRIERS FACED BY
CHILDREN.
ON THE NEXT SLIDE PLEASE YOU'LL
SEE THAT WE ALSO ISSUED A
REQUEST FOR INFORMATION WHERE WE
RECEIVED INFORMATION FROM THE
GENERAL PUBLIC ABOUT INVITING
THEM TO COMMENT ON
CONSIDERATIONS FOR INCLUSION IN
CLINICAL RESEARCH ACROSS THE
LIFE-SPAN.
AND ON THE NEXT SLIDE YOU CAN
SEE WE CONSIDERED ALL OF THE
FEEDBACK THAT WE RECEIVED AND IN
2017 NIH ANNOUNCED THE INCLUSION
ACROSS THE LIFE-SPAN POLICY
WHICH BECAME EFFECTIVE FOR
APPLICATIONS.
IN THIS POLICY IT REQUIRES THAT
INDIVIDUALS OF ALL AGES MUST BE
INCLUDED IN NIH SUBJECT HUMAN
RESEARCH UNLESS THERE IS IS
SCIENTIFIC OR ETHICAL REASONS
NOT TO DO SO.
IT REQUIRES SUBMISSION OF
INDIVIDUAL LEVEL DATA IN
PROGRESS REPORTS BASED ON
SECONDS OR GENDER, RACE,
ETHNICITY AND AGE AT ENROLLMENT.
ONE QUESTION IS DO WE NEED THE
INCLUSION OF THE
[ INDISCERNIBLE ]
BASED ON THE DISCUSSION AND THE
DATA WE SAW THERE WAS A LOT OF
EVIDENCE THAT OUR RESEARCH WAS
NOT REPRESENT I HAVE OF ALL AGE
GROUPS.
FOR EXAMPLE THE MEAN AGE OF
PARTICIPANTS IN CLINICAL TRIALS
WAS LOWER THAN THE AGE OF
INDIVIDUALS WITH THE CONDITION.
SO THE HOPE IS THAT THE
INCLUSION WILL HELP TO ADDRESS
SOME OF THE GAPS.
YOU CAN SEE OUR CURRENT
REQUIREMENTS FOR THE INCLUSION
OF WOMEN AND RACIAL AND ETHNIC
MINORITIES.
I MENTIONED WHEN WE TALKED ABOUT
THE TIME LINE THAT NIH HAS HAD
POLICIES ON THE INCLUSION OF
WOMEN AND MEMBERS OF RACIAL AND
ETHNIC MINORITIES GROUPS SINCE
1994.
SO THE CURRENT POLICY IS THAT
WOMEN AND MEMBERS OF RACIAL AND
ETHNIC MINORITY GROUPS MUST BE
INCLUDED IN ALL STUDIES UNLESS
THERE IS A COMPELLING RATIONAL
FOR EXCLUSION.
>> I'M SORRY TO INTERRUPT BULB
THE INTERPRETER WOULD LIKE YOU
TO PACE A LITTLE BIT SLOWER
>> OKAY.
THANK YOU VERY MUCH.
APPRECIATE THAT.
I TEND TO SPEAK QUICKLY.
I WILL TRY TO SLOW DOWN.
SO THE INCLUSION OF WOMEN AND
MEMBERS OF RACIAL AND ETHNIC
MINORITY GROUPS IS REQUIRED FOR
ANY RESEARCH STUDIES UNLESS
THERE IS A COMPELLING RATIONAL
FOR EXCLUSION SO WHAT MIGHT BE A
COMPELLING RATIONAL FOR EXAMPLE
IF YOU'RE DOING A STUDY ON
PROSTATE CANCER AND YOU MAY
INCLUDE SUBJECTS THAT AT BIRTH
THEY ARE ASSIGNED FEMALE.
IT'S NOT A COMPELLING RATIONAL
RATIONALFOR EXCLUSION.
FOR STUDIES THAT ARE DOING AN
NIH DEFINED PHASE III CLINICAL
TRIAL THEY HAVE ADDITIONAL
REQUIREMENTS TO REPORT THEIR
ANALYSIS.
BY SEX OR GENDER, RACE AND
ETHNICITY.
JUST TO SUMMARIZE THE CURRENT
REQUIREMENTS FOR APPLICANTS WE
REQUIRE THAT ALL APPLICANTS
PROVIDE PLANS FOR INCLUSION OF
WOMEN AND RACIAL AND ETHNIC
MINORITY GROUPS AND A PLAN FOR
INDIVIDUALS ACROSS THE
LIFE-SPAN.
SO THESE PLANS SHOULD INCLUDE
OUTREACH STRATEGIES TO THESE
GROUPS.
AND EXPLAIN THE RECRUITMENT AND
RETENTION OF THESE POPULATIONS.
APPLICANTS ARE ALSO REQUIRED TO
PROVIDE MINIMUM AND MAXIMUM AGE
LIMITS AND INCLUSION ENROLLMENT
REPORT WHICH IS A FORM THAT YOU
SEE HERE THAT SHOWS THE
DEMOGRAPHICS OF THE PARTICIPANTS
THEY WILL BE RECRUITING.
YOU CAN SEE OUR REQUIREMENTS FOR
PROGRESS REPORTS.
AND IN EACH PROGRESS REPORT
INVESTIGATORS ARE REQUIRED TO
SUBMIT INDIVIDUAL LEVEL DATA ON
THE RACE, ETHNICITY, SEX OR
GENDER, AGE OF EVERY PARTICIPANT
IN THEIR RESEARCH AND THIS
ALLOWS US TO NOT ONLY GATHER AGE
DATA FOR THE FIRST TIME BUT ALSO
HELPS US TO BE ABLE TO LOOK AT
THE INTERSECTION OF THESE
VARIABLES.
SO THE RESULT OF ALL OF THIS IS
THAT NIH HAS BEEN ABLE TO
IMPLEMENT THE 21st CENTURY
CURES ACT REQUIREMENTS.
WEST NOW HAVE DATA AVAILABLE ON
OUR WEBSITE WHICH SHOW THE
DEMOGRAPHICS OF PARTICIPANTS IN
OUR RESEARCH.
BY SEX, GENDER, RACE OR
ETHNICITY.
AND NOW WE HAVE THE FIRST
SNAPSHOT OF DATA BY AGE WHICH
JUST BECAME AVAILABLE MORE
RECENTLY THIS YEAR.
THE DATA ARE AVAILABLE FOR ALL
OF OUR RESEARCH CONDITION AND
DISEASE CATEGORIES.
THIS INCLUDES A CATEGORY FOR
DOWN SYNDROME.
YOU CAN GO TO OUR WEBSITE AND
LOOK AT PARTICIPANTS IN ANY
GIVEN YEAR ON WHAT THE
DEMOGRAPHICS LOOK LIKE.
TO SHOW YOU A SNAPSHOT I HAVE
DATA AVAILABLE BY A BROAD AGE
GROUPS.
AND THIS SHOWS FOR THE FIRST
TIME WE WERE ABLE TO LOOK AT AGE
OF PARTICIPANTS IN OUR RESEARCH.
SO WHILE THIS IS JUST A SNAPSHOT
OF DATA I THINK THIS IS REALLY
EXCITING.
YOU CAN SEE BASED ON THIS GRAPH
THIS SHOWS FOR THE DATA THAT WE
HAVE THE YEAR 2021 ABOUT 20% OF
RESEARCH PARTICIPANTS WERE
CHILDREN.
7 ABOUT 58% ADULTS 18-64.
BEFORE 19% OLDER ADULTS 65 AND
OVER AND A SMALL PERCENTAGE OF
UNKNOWN AT ABOUT 3%.
YOU CAN SEE SOME ADDITIONAL
BREAK DOWN BY NARROW GROUPS.
WE DID RECEIVE A LOT OF FEEDBACK
FROM THE COMMUNITY ABOUT THE AGE
GROUPS THAT WERE MOST IMPORTANT
TO CONSIDER AS WE THOUGHT ABOUT
REPORTING FOR THIS POLICY.
SO, WE TOOK THE FEEDBACK THAT WE
RECEIVED TO HEART.
THIS GENERALLY REFLECTS THE
FEEDBACK WE RECEIVED ON AGE
GROUP REPORTING.
AND SO YOU CAN SEE FOR EXAMPLE
IN THIS ONE A LITTLE MORE
GRANULAR DATA. WE HAVE A LOT OF
PARTICIPANT FOR EXAMPLE BETWEEN
THE AGES OF 55-64.
THERE IS A DROP OFF AFTER THAT
AND SOME OF OUR CATEGORIES ARE
QUITE SMALL.
IF WE LOOK AT PARTICIPATION OF
ADOLESCENTS IT'S SMALLER THAN WE
WOULD EXPECT.
AND THE NEXT SLIDE WE CAN SEE
ENROLLMENT BY SEX OR GENDER,
RACE OR ETHNICITY.
OVER HALF WERE FEMALE.
ABOUT 59%.
AND IF WE LOOK AT RACIAL
CATEGORIES WE CAN SEE ABOUT 1%
IDENTIFIED AS AMERICAN INDIAN OR
ALASKAN NATIVE.
ABOUT 5% IDENTIFIED AS ASIAN.
13% IDENTIFIED AS BLACK OR
AFRICAN-AMERICAN.
LESS THAN 1% IDENTIFIED AS
NATIVE HAWAIIAN OR OTHER PACIFIC
ISLANDER.
AND THE LARGEST RACIAL GROUP WAS
WHITE.
ABOUT 2% IDENTIFIED AS MORE THAN
ONE RACE AND WE HAD A FAIRLY
HIGH OF UNKNOWN OR NOT REPORTED.
ABOUT 14%.
IF WE LOOK AT ETHNICITY WE CAN
SEE ABOUT 10.5% IDENTIFIED AS
HISPANIC OR LATINO.
THE NEXT SLIDE PLEASE.
>> ANOTHER REMINDER ABOUT
PACING.
THE INTERPRETERS ARE HAVING A
CHALLENGE KEEPING UP.
7
>> OKAY.
OKAY.
I APOLOGIZE.
WE'LL GIVE THEM A MOMENT TO
CATCH UP.
7 -- SO I WANTED TO TELL YOU ALL
SINCE WE'VE IMPLEMENTED THE
INCLUSION ACROSS THE LIFE-SPAN
POLICY ONE OF THE THINGS THAT
WE'VE DONE IS WE HAD A MEETING
IN SEPTEMBER 2020 TO SEE HOW WE
WERE DOING IN IMPLEMENTATION OF
THE POLICIES AND WHAT WERE THE
ONGOING CHALLENGES?
INCLUDING INDIVIDUALS ACROSS ALL
AGE GROUPS AND ACROSS VARIOUS
DEMOGRAPHICS.
AVENUE THE FULL REPORT FROM THAT
MEETING IS AVAILABLE ON OUR
WEBSITE.
BUT I DID WANT TO SHARE WITH YOU
SOME OF THE RECURRENT THEMES.
AND A LOT OF THESE WE'VE
DISCUSSED TODAY.
THESE INCLUDE THINGS LIKE
LIMITING INCLUSION AND EXCLUSION
CRITERIA.
SO WE WANT TO MAKE SURE THAT OUR
INCLUSION AND EXCLUSION CRITERIA
ARE ALL NECESSARY AND THAT WE'RE
NOT PUTTING IN INCLUSION AND
EXCLUSION CRITERIA THAT MAY BE
ARBITRARY AND MAY
DISPROPORTIONATELY EXCLUDE
CERTAIN GROUPS UNNECESSARILY.
ALSO WEIGHING THE RISK OF
EXCLUSION VERSUS PARTICIPATION.
CERTAIN GROUPS ARE MORE LIKELY
TO BE EXCLUDED INCLUDING
CHILDREN ALSO INCLUDING
INDIVIDUALS WITH FOR EXAMPLE
PREGNANT WOMEN.
8 WHO MAY BE CONSIDERED
POPULATIONS WITH SPECIAL
PROTECTIONS BY THE REGULATION.
HOWEVER, I THINK AS WE'VE SEEN
FOR EXAMPLE IN OUR RESEARCH IN
COVID-19 THAT IF GROUPS ARE NOT
INCLUDED WE DON'T HAVE THE
INFORMATION THAT WE NEED TO BE
ABLE TO APPROPRIATELY TREAT
THEM.
SO IT IS IMPORTANT THAT WE
CONSIDER NOT ONLY THE RISK OF
PARTICIPATING IN RESEARCH BUT
THE RISK OF NOT PARTICIPATING IN
RESEARCH AND WHAT THAT MEANS FOR
VARIOUS GROUPS.
MINIMIZING PARTICIPANT AND CARE
GIVER BURDEN IS ANOTHER BIG
ISSUE.
THIS HAS COME UP A LOT TODAY.
AND I REALLY APPRECIATE YOUR
COMMENTS THAT YOU ALL HAVE LIVES
AND YOU ALL HAVE
RESPONSIBILITIES AND IT'S
CHALLENGING TO GET TO MULTIPLE
STUDY VISITS.
UNDERGO MULTIPLE IT WILL STUDY
PROCEDURES.
THIS IS SOMETHING THAT WE NEED
TO KEEP AT THE FOREFRONT IN OUR
RESEARCH.
THE BURDEN ON THE PARTICIPANT
AND THE CARE GIVER AND THE WAYS
THAT WE CAN MINIMIZE THAT BURDEN
AS WE'RE DESIGNING OUR STUDIES.
ANOTHER POINT IS ABOUT
CONSIDERING THE DIVERSITY WITHIN
POPULATIONS.
SO POPULATIONS ARE NOT A
MONOLITH -- PEOPLE ARE VERY
DIFFERENT.
THEY DIFFER IN SIZE, DIET,
COGNITIVE STATUS.
DISABILITY ETC. AND SO WE NEED
TO MAKE SURE THAT WE'RE
CONSIDERING THAT DIVERSITY IN
STUDY DESIGN.
AND THEN SOME ADDITIONAL POINTS
INCLUDE MAKING SURE THAT WE'RE
CONTINUALLY ASSESSING AND
ADJUSTING OUR RECRUITMENT AND
RETENTION.
THIS IS NOT JUST A PLAN THAT WE
CREATE AND WE'RE DONE.
WE NEED TO MAKE SURE IT'S BEING
IMPLEMENTEDDED AND EXECUTED
APPROPRIATELY.
AND MAKING ADJUSTMENTS WHEN WE
NEED TO.
AND THEN FINALLY RESEARCHER
TRAINING AND RESOURCES.
I'LL TALK A LITTLE BIT ABOUT
SOME MORE RECENT EFFORTS.
7 NIH RECENTLY FUNDED A CONTRACT
WITH THE NATIONAL ACADEMY OF
SCIENCE ENGINEERING AND MEDICINE
WHICH PRODUCED A REPORT ON
IMPROVING REPRESENTATION IN
CLINICAL TRIALS AND RESEARCH.
SO THE FULL REPORT IS AVAILABLE
ON THE ACADEMY'S WEBSITE.
IT INCLUDED A NUMBER OF
RECOMMENDATIONS FOR NIH FOR
FEDERAL AGENCIES AND FOR THE
SCIENTIFIC COMMUNITY.
THAT OUTLINE SOME POTENTIAL NEXT
STEPS FOR INCLUSION.
SO THIS GIVES US A LOT TO THINK
ABOUT.
IT INCLUDES THINGS FOR EXAMPLE
LOOKING AT REIMBURSEMENT FOR
STUDIES.
LOOKING AT PARTICIPANT
COMPENSATION.
LOOKING AT NIH'S PROCESSES AND
REVIEW CRITERIA TO ENSURE
INCLUSION.
AND ALSO SUPPORTING COMMUNITY
ENGAGEMENT EFFORTS WHICH WE'VE
HEARD A LOT ABOUT TODAY AND
MAKING SURE THAT THOSE ARE
ADEQUATELY SUPPORTED AND FUNDED
BY THOSE INVOLVED IN RESEARCH.
I WANT TO ALSO LET YOU KNOW
ABOUT SOME COMMUNICATIONS IN
TRAINING.
MY OFFICE -- THE OFFICE OF
EXTRAMURAL RESEARCH PUTS
TOGETHER A NUMBER OF RESOURCES
FOR INVESTIGATORS AND FOR THE
SCIENTIFIC COMMUNITY.
MIKE LAUER OUR DEPUTY DIRECTOR
HAS WRITTEN A NUMBER OF BLOGS.
I ENCOURAGE YOU TO CHECK THEM
OUT.
WE HAVE TRAINING FOR
INVESTIGATORS AVAILABLE ON OUR
WEBSITE.
WE PRESENT THIS EVERY YEAR AT
OUR VIRTUAL SEMINAR.
WE HAD IT FOR 14,000 ATTENDEES
LAST YEAR.
SO IT REALLY ALLOWS US TO GET A
BROAD REACH OUT THERE IN THE
SCIENTIFIC COMMUNITY TO LET THEM
KNOW ABOUT INCLUSION ISSUES AND
REQUIREMENTS.
SO WE WILL BE DOING THAT AGAIN
THIS YEAR.
ALSO HAVE THAT AVAILABLE ON OUR
WEBSITE.
AND FINALLY I JUST WANTED TO
POINT YOU TO SOME ADDITIONAL
RESOURCES THAT WE HAVE AVAILABLE
ON OUR WEBSITE.
OUR INCLUSION WEBSITE, I
ENCOURAGE YOU TO CHECK THEM OUT.
THANK YOU VERY MUCH.
I APPRECIATE THE OPPORTUNITY TO
TALK TO YOU TODAY.
>> THANK YOU SO MUCH AND THAT
FANTASTIC OVERVIEW OF THE
INCLUSION POLICY.
NOT ONLY THE LIFE-SPAN OF
MINIMUM AS WELL AS MINORITY
POPULATIONS.
IF WE CAN GET DR. ROSSER TEED
UP.
>> GOOD AFTERNOON.
THANK YOU SO MUCH.
>> AND JUST A DISCLAIMER PLEASE
TRY TO PACE YOURSELF AS THEY ARE
TRAVELING ABOUT TWO TO THREE
SENTENCES BEHIND US AND THEY
NEED EXTRA TIME FOR GRAPHICS.
TO REMIND YOU BUT TO REMIND
MYSELF.
>> THANK YOU.
THANK YOU FOR THE INVITATION TO
BE HERE AND I WILL SAY I'M A
FAST TALKER.
SO THIS WILL BE VERY DIFFICULT
FOR ME TO SLOW DOWN BUT I WILL
TRY MY BEST.
AGAIN, THANK YOU FOR HAVING ME
JOIN YOU THIS AFTERNOON TO TALK
A LITTLE BIT ABOUT THE DOWN
SYNDROME 360 PROJECT AND
DIVERSITY IN DOWN SYNDROME.
SO WHY IS DIVERSITY IN RESEARCH
SO IMPORTANT?
I THINK WE'VE ALREADY HEARD MANY
OF THESE ITEMS PRESENTED ON THE
SLIDE HERE IN EARLIER TALKS
TODAY.
CERTAINLY THE HISTORICAL
EXCLUSION OF SOME COMMUNITIES.
THE NEED TO HAVE ALL THE PIECES
OF A PUZZLE TO BE ABLE TO DRAW
ANY ADEQUATE CONCLUSIONS FROM
YOUR DATA.
INDIVIDUAL DIFFERENCES REALLY DO
MATTER AND THEY ARE VERY
IMPORTANT WHEN YOU START
ANALYZING THAT DATA. AND I
THINK AS WE MOVE MORE TOWARDS AN
AREA OF PERSONALIZED MEDICINE IN
TRYING TO EXPLAIN WHAT THAT
MIGHT MEAN TO A PARTICIPANT I
ALWAYS LIKE TO USE THE EXAMPLE
OF EYEGLASSES.
THAT IS SOMETHING THAT HAS BEEN
PERSONALIZED TO PARTICIPANTS AND
PATIENTS FOR MANY, MANY YEARS
SO, THAT IS NOT A NEW CONSENT TO
THEM.
AND THEN OF COURSE AS WE'VE
MENTIONED EARLIER TODAY HEALTH
DISPARITIES.
WHY IS IT SO IMPORTANT TO HAVE
EVERYONE INCLUDED TO BE ABLE TO
TEASE OUT THOSE DIFFERENCES
WHETHER IT BE RELATED TO RACE OR
ETHNICITY OR RELATED TO SOCIAL
DETERMINANTS OF HEALTH OR
ENVIRONMENTAL EXPOSURES.
SO, I'M GOING TO TELL YOU A
LITTLE HOW RACE AND ETHNICITY
DOES PLAY A ROLE IN MEDICAL
OUTCOMES IN DOWN SYNDROME.
AND WE'LL TALK ABOUT THAT AND
SOME OF THE DIVERSITY THAT WE
SEE IN OUR DS360 PROJECTS.
I FLANK THE DNA STRAND FROM THE
INCIDENTS OF BIRTH AND TO THE
LIFE EXPECTANCY.
IF YOU LOOK AT BIRTH THERE IS A
HIGHER BIRTH RATE OF DOWN
SYNDROME IF THE FAMILY IS OF
HISPANIC ETHNICITY.
THAT MAY NOT BE RELATED TO
GENETICS BUT MORE RELATED TO
ACCESS TO HEALTH CARE.
OR THOSE SOCIAL DETERMINANTS OF
HEALTH THAT I MENTIONED EARLIER.
IF WE'RE THINKING ALONG THE
LINES OF HOW GENES AND
ENVIRONMENT CAN IMPACT THEN RACE
AND ETHNICITY CERTAINLY PLAY A
ROLE IN CERTAIN MEDICAL
CONDITIONS.
SUCH AS LEUKEMIA WHERE THERE IS
A HIGHER RISK OF AMKL IF YOU'RE
HISPANIC.
-- SHOWS A HIGHER RISK IF YOU'RE
HISPANIC.
IN CONGENITAL HEART DISEASE --
YOU HAVE A HIGHER RISK OF CHD IF
YOU COME FROM BLACK ANCESTRY BUT
LESS IF YOU COME FROM HISPANIC
ETHNICITY.
AND WITH GI WITH CERTAIN TYPES
OF GI DEFECTS IT CAN VARY AND
YOU CAN HAVE A HIGHER RISK IF
YOU'RE HISPANIC OR ASIAN.
AND THEN AS WAS SHOWN EARLIER
TODAY LIFE EXPECTANCY IS
CERTAINLY IMPACTED.
IF YOU COME FROM A BLACK
ANCESTRY AND AGAIN THAT IS NOT
NECESSARILY ALL GENETICS RELATED
BUT COULD BE RELATED TO OTHER
HEALTH DISPARITIES.
7 THIS SLIDE WAS PULLED FROM THE
SAME NIH REPORT THAT DAWN JUST
MENTIONED EARLIER.
I'M JUST DISPLAYING IT
DIFFERENTLY.
AND I TOOK THE NUMBERS BASED ON
PARTICIPANTS THAT DID REPORT
RACE AND ETHNICITY.
SO YOU CAN SEE THE RACIAL BREAK
DOWN HERE WHERE CURRENTLY IN THE
NIH CLINICAL RESEARCH PROJECTS
FOR 2021 WE DEFINITELY SEE A
HIGHER INCLUSION OF WHITE
PARTICIPANTS AND THESE ARE
SELF-IDENTIFYING.
THAN WE DO OF THE OTHER RACIAL
GROUPS.
AND THEN FOR HISPANIC WE SEE
ABOUT A 16% REPRESENTATION OF
THOSE THAT ARE REPORTING
HISPANIC ETHNICITY COMPARED WITH
NONHISPANIC OF 81%.
SO I WANTED TO SHOW YOU THIS
SAME GRAPHIC COMPARING OUR
RESEARCH GROUP HERE IN BASED ON
EMORY WITH THE DS360 WORK.
SO THIS JUST SHOWS US WHERE OUR
DS STUDIES FALL INTO THAT.
AGAIN WE SEE ABOUT THE SAME
NUMBERS.
WE'RE NOT FAR OFF FROM WHAT
WE'RE SEEING IN CLINICAL TRIALS
AND CLINICAL RESEARCH OVER-ALL.
IS THAT A GOOD THING?
I'M NOT SO SURE.
WE CAN SAY YES WE'RE RIGHT THERE
WITH EVERYONE ELSE BUT THERE IS
STILL A LOT OF ROOM FOR
IMPROVEMENT. AND JUST TO GIVE
YOU AN IDEA OF WHAT THIS LOOKS
LIKE FOR THE CENSUS DATA -- THIS
SHOWS THE DIVERSITY IN THE U.S.
BASED ON CENSUS DATA FROM 2010
AND FROM 2020.
AND AS YOU CAN SEE WE HAVE
INCREASED ACROSS THE U.S. IN
DIVERSITY A BIT.
AND THESE NUMBERS ARE STILL VERY
REFLECTIVE OF THE SAME NUMBERS
WE JUST SAW IN THE CLINICAL
RESEARCH PROJECTS.
BUT I ALSO WANT TO CHALLENGE
EVERYONE THAT THAT IS NOT GOOD
ENOUGH.
WE NEED TO INCREASE THESE
PERCENTAGES IN OUR RESEARCH
STUDIES.
SO JUST TO GIVE YOU A LITTLE
MORE INFORMATION ABOUT THE DOWN
SYNDROME RESEARCH STUDIES AT
EMORY.
WE HAVE BEEN CONDUCTING RESEARCH
HERE FOR QUITE SOME TIME.
STARTED BACK IN THE EARLY
1990s WITH THE ATLANTA DOWN
SYNDROME PROJECT.
WE JUST COVERED THE FIVE COUNTY
METRO AREA IN ATLANTA.
THAT WAS EXPANDED AROUND 2000 TO
THE NATIONAL DOWN SYNDROME
PROJECT WHICH ENCOMPASSES 6
STATES ACROSS THE UNITED STATES
AND WAS A POPULATION BASED
PROJECT.
AND AFTER THAT PROJECT CONCLUDED
WE CONTINUED WITH THE SAME GOALS
IN MIND BUT RETREATED BACK TO
BEING BASED AT EMORY WITH THE
EMORY DOWN SYNDROME PROJECT.
BUT ALSO SINCE WE WERE ABLE TO
DO MANY THINGS ON-LINE AT THAT
POINT ALTHOUGH IT WAS ATLANTA
BASED WE DID OVEN ROLEMENT
NATIONWIDE.
A COUPLE OF THE SUB STUDIES THAT
WE HAVE COMPLETED OVER THE YEAR
* WERE THE DOWN SYNDROME CHC
STUDY WHICH LOOKED AT CONGENITAL
HEART DEFECTS.
AS WELL AS THE DOWN SYNDROME
COGNITION PROJECT WHICH ALSO
INVOLVED MULTIPLE SITES ACROSS
THE U.S.
SO I WANT TO DO A SIDE MENTION
OF THE DIVERSITY IN INCLUDING
PARTICIPANTS IN RESEARCH IS
EXTREMELY IMPORTANT AND THAT IS
WHY WE'RE HERE.
BUT IT'S ALSO IMPORTANT TO HAVE
DIVERSITY IN THE DATA TYPES THAT
WE ARE COLLECTING AS
RESEARCHERS.
TO BE ABLE TO IDENTIFY THOSE
RISK FACTORS.
SO THIS SLIDE GIVES YOU AN IDEA
OF THE TOTAL PARTICIPANTS WE
HAVE IN OUR STUDIES AND THE
TYPES OF DATA THAT WE HAVE
COLLECTED FROM THOSE
PARTICIPANTS.
THERE IS SURVEY DATA.
WE HAVE TRANSITIONED OVER TIME
TO AN ON-LINE SURVEY WHICH
ALLOWS US TO REACH MORE
PARTICIPANTS ACROSS THE U.S. AS
WELL AS RURAL PARTICIPANTS.
WE COLLECT SAMPLES, BLOOD
SAMPLES AND SAY LIVE AFTER
SAMPLES WHICH ALSO ALLOWED US TO
MOVE TOWARD A COLLECTION AT
HOME.
SO YOU DIDN'T HAVE TO GO IN TO A
DOCTOR'S OFFICE TO GET BLOOD
DRAWN.
YOU CAN HAVE THE SALIVA KIT SENT
TO YOUR HOME ADDRESS AND
COMPLETE IT AND MAIL IT BACK US
TO.
WE HAVE SEQUENCING DATE AND
MEDICAL DATA. IT'S IMPORTANT TO
HAVE THOSE PHENOTYPES THAT WE
CAN USE TO CONNECT WITH THE
GENETIC DATA. AND THEN WE HAVE
COGNITIVE TESTING ON ABOUT 338
OF OUR PARTICIPANTS.
SO OUT OF THE WORK WITH THE
NATIONAL DOWN SYNDROME PROJECT I
WANTED TO DRAW YOUR ATTENTION TO
TWO THINGS THAT WE NOTICED THERE
IN RELATION TO THE CONGENITAL
HEART DEFECTS AND THIS GOES BACK
TO THE DIFFERENCES IN GENETIC
BACKGROUNDS.
THAT CAN CAUSE INCREASED RISK
FOR A MEDICAL CONDITION.
AND IN THIS CASE WE LOOKED AT
GENDER AND MALE AND FEMALE --
SEX AND WE NOTICED THAT THERE
WAS A HIGHER RISK IF YOU WERE
FEMALE.
TO HAVE A CONGENITAL HEART
DEFECT.
SPECIFICALLY AN AVSD.
WE ALSO LOOKED ACROSS RACES
BLACK, HISPANIC AND ASIAN AND
HERE IS WHERE WE SAW THERE WAS
AN INCREASED RISK IF YOU HAVE
BLACK ANCESTRY BUT DECREASED IF
YOU WERE HISPANIC ETHNICITY.
WE ALSO LOOKED AT SPECIFIC TYPES
OF GI DEFECTS.
HOWEVER, OUR SAMPLE SIZES WERE
TOO SMALL TO BE ABLE TO SHOW ANY
STATISTICAL SIGNIFICANCE IN
THESE.
BUT AS YOU CAN SEE JUST WITH
THESE THREE TYPES OF GI DEFECTS
WE WERE ABLE TO SHOW THAT AGE
MATTERED WITH THE AGE OF THE MOM
WHEN SHE HAD THE CHILD WITH DOWN
SYNDROME.
SEX MATTERED WHETHER THE CHILD
WAS FEMALE OR MALE.
DEPENDING ON THE DISEASE AND
THEN ANCESTRY ALSO PLAYED A ROLE
IN ALL THREE OF THESE IN
INCREASING RISK FOR THESE TYPES
OF GI EFFECTS.
WE WOULD LIKE TO EXTEND THIS
RESEARCH AND COLLECT ADDITIONAL
FAMILIES TO SEE IF THOSE RISK
CHANGES THAT WE SAW ARE ACTUALLY
STATISTICALLY SIGNIFICANT.
SO, THAT IS WHERE WE HIT THE
BARRIERS TO PARTICIPATION IN
RESEARCH.
AND AGAIN I THINK MOST OF THESE
WE HAVE HEARD ABOUT ALREADY
TODAY.
BUT WE SEE THOSE TIME AND TIME
AGAIN.
FAMILY INVOLVEMENT, HOW MUCH
TIME IS INVOLVED.
WHO'S GOING TO HAVE TO BE THERE
HAVING THE ADDITIONAL SUPPORT AT
A VISIT.
INCENTIVES.
WE CANNOT SPEAK TO THAT ENOUGH
AND I NOTICED IN THE CHAT THAT
IT WAS MENTIONED THAT INCENTIVE
IS NOT JUST -- AN INCENTIVE AS
COMPLETION AT THE END OF THE
STUDY.
HERE IS YOUR GIFT CARD OR MONEY
FOR DOING THE STUDY BUT ALSO DO
YOU PROVIDE RIDE SHARE TO YOUR
FACILITY SO A FAMILY CAN
COMPLETE THE STUDY?
DO YOU PROVIDE LUNCH?
DO YOU PROVIDE THOSE OTHER
THINGS THAT MIGHT BE NEEDED IF
THEY ARE THERE ALL DAY AND
INVOLVED IN YOUR STUDY?
THE THIRD THING INFORMATION
LEARNED.
IS THIS GOING TO BE SOMETHING
THAT THE FAMILIES ARE GOING TO
GET RESULTS BACK THAT THEY CAN
USE.
AND IF NOT JUST ARE THEY GOING
TO GET ANY INFORMATION BACK
ABOUT THE STUDY AND ABOUT THE
RESULTS?
AND I MENTIONED THE TIME
INVOLVED AND IT'S NOT JUST FOR
THE SPECIFIC VISIT BUT ARE THEY
GOING TO BE INVOLVED IN THE
STUDY FOR YEARS?
WILL THEY NEED TO COME IN
MULTIPLE TIMES?
ALL OF THOSE WE HAVE SEEN ARE
BARRIERS BUT I DO THINK A NUMBER
OF THESE CAN BE ADDRESSED AND
CAN BE OVERCOME.
I'M GOING TO SWITCH HATS AND
TALK TO YOU ABOUT MY OTHER ROLE
AS THE EMORY PI FOR THE ALL OF
US RESEARCH STUDY.
SO IF YOU HAVE NOT HEARD OF ALL
OF US -- THE PROGRAM IS ALSO
FUNDED BY THE NIH AND ITS GOAL
IS TO ENROLL ONE MILLION OR MORE
PEOPLE TO HAVE ONE OF THE
LARGEST, RICHEST AND MOST
DIVERSE BIOMEDICAL DATASETS OF
ITS KIND.
ONE OF OUR GOALS IN THIS PROGRAM
IS TO BRING IN THOSE UNDER
REPRESENTED COMMUNITIES THAT
HAVE NOT BEEN ENGAGED IN
RESEARCH PREVIOUSLY AND
CURRENTLY WE'RE DOING A FAIRLY
GOOD JOB.
SO WE HAVE ABOUT 80% OF OUR
PARTICIPANTS THAT ARE IDENTIFIED
AS COMING FROM AN UNDER
REPRESENTED COMMUNITY.
AND ABOUT 50% OF THOSE
SELF-IDENTIFY AS SOMETHING OTHER
THAN CAUCASIAN.
SO THEY ARE A RACIAL AND ETHNIC
MINORITY.
SO ALL OF US -- HOPING TO ENABLE
RESEARCH DISCOVERIES THAT DRIVE
MORE PRECISE APPROACHES TO CARE.
HAVING THOSE SPECIFIC
PRESCRIPTION AND EYEGLASSES FOR
EVERYONE FOR THE DIFFERENT
DISEASES AND DISORDERS.
SO WE ENGAGE WITH PEOPLE AND
COMMUNITIES WHO HAVE OFTEN BEEN
LEFT OUT OF RESEARCH.
WE'RE COMBINING BOTH NOT JUST
THEIR SAMPLES AND THE DATA BUT
THE SOCIAL DETERMINANTS ON A
LARGE AND INCLUSIVE SCALE.
WE'RE PUSHING ALL OF THIS DATA
BACK SO THAT RESEARCHERS CAN
HAVE IT AND PARTICIPANTS CAN
HAVE IT.
THEY HAVE A PORTAL THAT THEY CAN
ACCESS AND SEE THEIR OWN
INDIVIDUAL DATA.
SOMETIMES IN REALTIME.
AND WE PLAN TO FOLLOW THESE
PARTICIPANTS.
THEY ARE EXPECTED TO HOPEFULLY
BE ENROLLED IN THE PROGRAM FOR
10 YEARS OR MORE.
AND THEY KNOW THAT GOING IN.
AND THEY EXPECT THAT THEY WILL
HAVE CONTINUED ASK FROM OUR
GROUPS OVER THE NEXT YEARS.
7 SO ALTHOUGH MY FIRST SLIDES
DID FOCUS ONth RACIAL AND
ETHNIC IDENTITIES * I WANTED TO
HIGHLIGHT THAT THERE ARE OTHERS
AS WELL AND I KNOW WE'VE HEARD
DEFINITELY TODAY ABOUT THE
ACCESS TO CARE.
WE'VE HEARD ABOUT GEOGRAPHY
RELATED TO RURAL POPULATIONS
VERSUS BEING NEXT DOOR TO A
HEALTH CARE FACILITY OR RESEARCH
UNIVERSITY.
THAT IT'S EASY TO ATTEND THOSE
VISITS.
INCOME AND EDUCATION, WE'VE
TALKED ABOUT PARTICIPANTS CANNOT
TAKE OFF DURING THE WEEK OFTEN
TO COME IN FOR APPOINTMENTS SO
SCHEDULING THOSE OUTSIDE OF WORK
HOURS.
EDUCATION, MEETING THE
PARTICIPANT WHERE THEY ARE ON A
LEVEL THAT THEY CAN UNDERSTAND.
NOT ONLY WHAT WE'RE ASKING OF
THEM IN THAT CONFORM CONSENT
FORM BUT ALSO IN THOSE RESULTS
THAT WE RETURN.
WE PUBLISH THESE PAPERS ALL THE
TIME BUT WE NEED TO MAKE SURE
THAT WE GIVE THOSE RESULTS BACK
TO THE PARTICIPANTS.
IN SUMMARIES THAT THEY CAN
UNDERSTAND.
SO, I JUST WANTED TO TALK A
LITTLE BIT ABOUT HOW ALL THE ALL
OF US PROGRAM IS ACCOMPLISHING
THIS.
HOW DO WE HAVE THE 80%
REPRESENTATION AND THE 50%
RACIAL AND ETHNIC PARTICIPATION?
WE TRY TO EMPOWER THE
PARTICIPANT.
IT IS IN OUR CORE VALUES THAT
PARTICIPATION IS OPEN TO ALL AND
THAT PARTICIPANTS ARE PARTNERS.
THAT WE ARE NOT GOING INTO THE
COMMUNITIES AND USING THEM FOR
OUR RESEARCH.
THEY REALLY ARE PARTNERS IN THIS
RESEARCH.
THE PARTICIPANTS HAVE ACCESS TO
THEIR INFORMATION.
I KNOW SOMETIMES DEPENDING ON
THE RESEARCH STUDY AND THE
MEASURES BEING TESTED OR BEING
USED THAT HERE NOT VALIDATED
THAT YOU CANNOT ALWAYS RETURN
SPECIFIC RESULTS TO EACH
PARTICIPANTS BUT THERE HAS TO BE
SOME TYPE OF SUMMARY RESULTS SO
THAT THEY GET SOMETHING BACK AND
TRANSPARENCY EARNS TRUST.
WE'VE HEARD THAT SO MANY TIMES
TODAYS BUT IT IS TRUE.
YOU NEED TO BE TRANSPARENT ABOUT
WHAT YOU'RE DOING AND IN
RETURNING THAT INFORMATION BACK
AND TRANSPARENT ABOUT THE
PROBLEMS THAT HAVE BEEN IN
RESEARCH BEFORE AND WHY THAT
MIGHT MAKE SOMEONE HESITANT TO
BE INVOLVED IN YOUR STUDY.
THE PROGRAM PROVIDES EDUCATION
FOR PARTICIPANTS AND I DON'T
EXPECT YOU TO BE ABLE TO READ
THIS BECAUSE I KNOW IT'S SMALL
FONT.
IT WAS TO GIVE YOU AN EXAMPLE OF
SOME OF THE MATERIALS THAT WE
HAVE.
BUT IT'S NOT JUST ABOUT THE
STUDY THEY ARE IN.
BUT IT'S ACTUALLY JUST GENERAL
INFORMATION.
WE HAVE ALL TALKED ABOUT THAT WE
GIVE INFORMATION BACK ON DOWN
SYNDROME TO NEW FAMILIES.
WE GIVE INFORMATION ON GENOMICS.
WHAT IS DNA?
WHY ARE YOU GETTING THIS BLOOD
SAMPLE FROM ME.
WHAT TYPE OF RESULTS CAN WE
EXPECT TO SEE?
WE GIVE BACK SOME BASIC ANCESTRY
RESULTS SO WE WANT TO EXPLAIN
WHAT DOES THAT MEAN?
WHY IS IT IMPORTANT TO
UNDERSTAND WHERE YOUR ANCESTORS
HAVE COME FROM?
AND HOW WOULD YOU INTERPRET THAT
REPORT?
WHAT WOULD IT MEAN FOR YOU?
THIS GENERAL INFORMATION I THINK
IS AGAIN VERY IMPORTANT TO JUST
PROVIDE TO THE PARTICIPANTS AN
EXTRA LAYER OF HELPING THEM
UNDERSTAND NOT ONLY ABOUT YOUR
STUDY BUT WHY RESEARCH IS
IMPORTANT OVER-ALL.
SO UNDERSTAND THE TRANSPARENCY
EARNS TRUST AND AGAIN NOT
EXPECTING YOU TO BE ABLE TO READ
THE SMALL PRINT BUT WE TALK
ABOUT HOW WE'RE GOING TO PROTECT
THEIR DATA.
HOW ARE WE GOING TO PROTECT
THEIR INFORMATION?
AND IN THIS DAY AND AGE WHERE
THERE IS SO MUCH HACKING
INVOLVED AND ESPECIALLY IF
YOU'RE COLLECTING DNA SAMPLES
WHAT DOES THAT MEAN?
WHEN WE SAY IT'S GOING TO BE
SHARED WITH A DATABASE THAT
RESEARCHERS WILL HAVE ACCESS TO
OR IT'S GOING TO BE SHARED WITH
THE NATIONAL DATABASE WHAT DOES
THAT MEAN AND WHAT ARE THE RISK
THAT MIGHT POTENTIALLY BE
INVOLVED.
JUST BE UP FRONT AND HONEST
ABOUT ALL OF THOSE QUESTIONS.
ALL OF US ALSO RETURNS CERTAIN
MEDICAL GENETIC INFORMATION.
SO WE HAVE TO ADDRESS WHAT DOES
THAT MEAN?
HOW COULD THAT IMPACT YOUR
HEALTH INSURANCE, YOUR
DISABILITY INSURANCE, LIFE
INSURANCE.
LONG-TERM CARE INSURANCE.
ALTHOUGH GENOME DOES A VERY GOOD
JOB OF PROTECTING PARTICIPANTS
WITH HEALTH INSURANCE ISSUES IT
DOES NOT COVER EVERYONE OR OTHER
TYPES OF INSURANCE.
SO DEPENDING ON WHAT TYPE OF
RESULTS THAT YOU MIGHT BE
RETURNING JUST MAKE SURE THEY
UNDERSTAND THAT IN ADVANCE AND
HOW THAT MIGHT AFFECT THEIR CARE
AS WELL AS THEIR FAMILY'S CARE.
WE HAVE CUSTOM CAMPAIGNS.
AND THIS I THINK IS VERY
IMPORTANT TO BE ABLE TO REACH
THOSE COMMUNITIES THAT YOU'RE
PLANNING TO ASK TO BE IN YOUR
STUDIES.
THEY NEED TO LOOK LIKE THE
COMMUNITY THAT YOU'RE GOING
INTO.
THEY NEED TO BE SIMPLE.
STRAIGHT FORWARD.
THEY NEED TO EXPLAIN WHY THEY
WANT TO AND NEED TO DO THIS
RESEARCH.
IT IS REALLY IMPORTANT FOR YOU
TO MEET THE COMMUNITY WHERE THEY
ARE AND TRY TO UNDERSTAND WHAT
WOULD BE IMPORTANT FOR THEM TO
ENGAGE WITH THEM TO BE IN YOUR
RESEARCH.
SO I THINK THIS IS JUST THE
SUMMARY THAT AGAIN WE'VE HIT OFF
MANY OF THESE TOPICS BEFORE OF
WAYS THAT WE CAN INCREASE
PARTICIPATION AND DIVERSITY.
WE TALKED ABOUT HAVING THOSE
PARTICIPANT ADVISORY BOARDS.
YOUR RESEARCH PLAN AND SPECIFIC
AIMS MAY BE SUPER EXCITING TO
YOU BUT WHEN YOU TALK TO
PARTICIPANTS THEY MAY BE LIKE
THAT DOESN'T SEEM LIKE SOMETHING
I'M INTERESTED IN DOING BUT IF
YOU SWITCHED IT AROUND AND YOU
ASK THIS QUESTION.
NOW THAT WE CAN GET ON-BOARD
WITH.
SO, ITS VERY IMPORTANT TO GET
THE FEEDBACK EARLY ON TO KNOW
HOW YOU MIGHT NEED TO ADJUST
SOME OF THE QUESTIONS THAT
YOU'RE EVEN ASKING.
IT'S IMPORTANT AGAIN TO HAVE
THOSE TAILORED RECRUITMENT
MATERIALS.
WE'VE TALKED NUMEROUS TIMES
ABOUT INCREASING INCENTIVES.
MAKING IT WORTH THE TIME THAT
YOU'RE ASKING THE PARTICIPANTS
TO PUT NCATS RETURN OF
INFORMATION.
GIVING THEM BACK SOMETHING FOR
BEING IN THIS STUDY.
ESTABLISHING THOSE COMMUNITY
PARTNERSHIPS AND MAKING SURE
THAT IT IS AN EXTENDED
PARTNERSHIP.
YOU CANNOT GO INTO A COMMUNITY
AND ASK THEM TO BE IN YOUR
RESEARCH STUDY AND THEN NOT GIVE
THEM ANYTHING BACK.
7 AND THEN EXPECT TO GO BACK TO
THE SAME COMMUNITY SIX MONTHS, A
YEAR LATER, TWO YEARS LATER
GUESS WHAT?
I'VE GOT ANOTHER STUDY.
LET'S DO IT AGAIN.
THAT IS NOT GOING TO WORK.
THESE PARTNERSHIPS, YOU HAVE TO
BE PART OF THE COMMUNITY AND
PROVIDING THE OTHER RESOURCE
THAT'S EXTEND BEYOND YOUR
RESEARCH.
AND THEN REAL EVENT.
JUST MAKING SURE THAT THIS IS
SOMETHING RELEVANT TO THE
POPULATIONS THAT YOU'RE ASKING
TO BE INVOLVED.
MAKING SURE THAT THEY ARE TEAM
MEMBERS IN THOSE DECISIONS AND
GETTING THEIR INPUT.
AND THEN MY LAST SLIDE -- IS
JUST MY THANK YOU SLIDE TO
EVERYONE.
ALL OF THE PARTICIPANTS AND
FAMILIES THAT MAKE THIS
POSSIBLE.
WITHOUT THEM WE WOULD NOT BE
ABLE TO DO WHAT WE DO.
OUR TEAM THAT WAS FORMERLY
HEADED BY -- WHO'S RETIRED.
THE GROUPS THAT ARE INVOLVED
WITH THE PROJECTS AND THEN
FUNDING.
SO THANK YOU FOR THIS.
I THINK WE'RE DOING QUESTIONS AT
THE END.
>> YES AND THANK YOU SO MUCH
DR. ROSSER FOR THAT FANTASTIC
PRESENTATION AND EMPHASIZING
AGAIN PATIENT ENGAGEMENT AND
THAT IT TAKES ALL OF US
PARTICULARLY WITH A TAILORED
APPROACH TO ANSWER SOME OF THE
RESEARCH QUESTIONS AND TO HELP
WITH CARE.
SO NEXT WE HAVE DR. KELLY AND
DR. MILLER AND SO I WANT TO
GENTLY REMIND YOU TO PLEASE BE
AWARE OF PACING FOR THE
INTERPRETATION.
SO DR. KELLY.
>> THANK YOU, DR. BROWN.
FIRST I WANTED TO THANK THE NIH
INCLUDE PROGRAM FOR HAVING US
HERE TODAY TO SHARE OUR JOURNEY
TOWARDS ADDRESSING WHAT WE
CONSIDER A CRITICAL MYTHOLOGICAL
GAP.
AND OUR EFFORTS TO OPTIMIZE THE
INFORMED CONSENT PROCESS FOR
PEOPLE WITH DOWN SYNDROME.
AND THAT THIS PROCESS LEVERAGES
THE DIVERSE VOICE OF OUR
COMMUNITIES.
AND THE GREAT FORTUNE OF
CO-PRESENTING WITH MY COLLEAGUE
DR. VICTORIA MILLER WHO HAS
GRACIOUSLY AGREED TO JOIN OUR
TEAM IN THIS MISSION.
SO FIRST, I THINK IT'S WORTH
MENTIONING THAT YOU'RE PROBABLY
ALL WONDERING WHY A PEDIATRIC
DIABETES DOCTOR IS PRESENTING
DURING A SLEEP FOCUS SECTION AND
YOU CAN BLAME SUJATA FOR THAT.
THIS JOURNEY FOR ME BEGAN IN THE
EARLY 2000s WHEN I WAS
STUDYING THE INTERSECTION OF
SLEEP APNEA AND HEART HEALTH IN
OTHERWISE HEALTHY INDIVIDUALS.
AND MY MENTOR WAS AN EXPERT IN
SLEEP DR. CAROL MARCUS AND WAS
DOING WORK IN DOWN SYNDROME.
FAST-FORWARD A FEW YEARS AND
ANOTHER MENTOR OF MINE -- WAS
DEVELOPING GROWTH CURVES FOR
CHILDREN WITH DOWN SYNDROME.
AND SHE KNEW THAT I WAS AT THAT
TIME PREGNANT WITH A CHILD WITH
DOWN SYNDROME AND INVITED ME TO
WORK WITH HER TO DO SOME WORK IN
DOWN SYNDROME.
AND AS A RESULT MY RESEARCH
PIVOTED AND WE WERE INTERESTED
IN LOOKING AT BO BODY COMPOSITI.
AND WHILE WE RECOGNIZE THE
IMPORTANCE OF SLEEP APNEA
INCLUDING STUDIES OF OBSTRUCTIVE
SLEEP APNEA WERE COSTLY AND
BEYOND THE SCOPE OF OUR WORK.
BUT THE IMPORTANCE OF
OBSTRUCTIVE SLEEP APNEA WAS
FURTHER HIGHLIGHTED FOR ME WHEN
I WANT TO SEE ONE OF MY
PARTICIPANTS WHO IS ENGAGED IN
OUR RESEARCH TO DO A PHYSICAL
EXAM AND SHE WAS SITTING NEXT TO
HER MOTHER AND SHE WAS SOUND
ASLEEP SNORING AND I WAS QUITE
CONCERNED THAT SHE WAS
OBSTRUCTING.
WE QUICKLY A -- ARRANGED FOR HER
TO HAVE A SLEEP STUDY.
SHE HAD TO HAVE URGENT CARE FOR
HER OBSTRUCTIVE SLEEP APNEA.
THIS HIGHLIGHTED THE IMPORTANCE
OF SCREENING AND MAKING IT MORE
CONVENIENT FOR OUR FAMILIES.
FAST-FORWARD AND I AM A CO-PI
WITH DR. TAPIA ON AN NIH FUNDED
STUDY OF SLEEP APNEA TESTING.
OUR OBJECTIVES ARE CAN WE MAKE
SLEEP TESTING EASIER FOR
FAMILIES IN THE CLINIC SETTING
AND IN THE RESEARCH SETTING AND
WE HAVE WANTED TO LOOK AT THE
ASK ACCEPTABILITY AND
FEASIBILITY.
7 WE ALSO WANTED TO CONFIRM THAT
THIS WAS -- THAT THE PERFORMANCE
WAS GOOD SO WE'RE COMPARING
HOMELY APNEA TESTING TO THE LAB.
AND AS PART OF THIS STUDY WE
WERE ENGAGING CAREGIVERS AND
PEOPLE WITH DOWN SYNDROME
THROUGH QUESTIONNAIRES AND
DISCUSSIONS REGARDING THE USE OF
HOME SLEEP APNEA TESTING AS WELL
AS IN LAB -- TO DISCUSS FACTORS
THAT FACILITATED OR IMPAIRED
ABILITY TO COMPLETE THE STUDIES.
AND -- A RESEARCHER COORDINATOR
BEGAN TO CONFER WITH ME
REGARDING SOME OF THE COMMENTS
THAT THE FAMILY MEMBERS WERE
PROVIDING TO HIM THAT WERE
OUTSIDE OF THE STANDARD
QUESTIONS THAT WE WERE HOPING TO
ADDRESS AS PART OF THE STUDY.
AND WHEN THE FIRST COMMENT WAS A
PARENT OF A 19-YEAR-OLD SAID THE
PREVIOUS STUDY WAS A TRAUMATIC
EXPERIENCE FOR BOTH OF US.
THIS RESONATED WITH OUR TEAM AND
HIGHLIGHTED THE IMPORTANCE OF
HAVING -- RESEARCH TEAM MEMBERS
WHO WERE SENSITIVE TO THE
LEARNING DISABILITIES AND
SENSORY ISSUES FOR OUR CHILDREN.
AND THEN A SECOND COMMENT WAS
QUITE ALARMING TO US AND THAT
WAS THAT MY CHILD'S PRIMARY CARE
PHYSICIAN TOLD ME IT WAS NOT
POSSIBLE DUE TO HIS SENSORY
ISSUES AND HE NEEDS TO DEAL WITH
THE SLEEP APNEA FOR THE REST OF
HIS LIFE.
THIS IS WHAT MOM REPORTED AND WE
DON'T KNOW WHAT WAS SAID BUT IT
HIGHLIGHTED US TO THAT WE NEED
TO RECALIBRATE EXPECTATIONS FOR
OUR MEDICAL COMMUNITY AND THAT
WE REALLY NEED TO EDUCATE THE
MEDICAL COMMUNITY BETTER ABOUT
SERVING THE NEEDS OF OUR
CHILDREN AND ADULTS WITH DOWN
SYNDROME.
IN PURSUIT OF OUR WORK WE HAVE A
MULTI-DISCIPLINARY TEAM WITH
EXPERTISE IN DOWN SYNDROME AND
PEDIATRIC SLEEP RESEARCH.
AS YOU KNOW DR. TAPIA HAS A MADE
A FIRM COMMITMENT TO DIVERSITY.
CHRIS CELLO IS COMMITTED TO
ADVANCING THE HOME TESTING IN
YOUTH AND DR. MELISSA -- HAS
WORKED WITH ME SINCE 2010 AND
SHE INTRODUCED US TO SOCIAL
STORIES OR STORY BOARDS WHICH I
WILL HIGHLIGHT LATER IN HELPING
TO ALLAY THE ANXIETY THAT MAY
OCCUR IN PEOPLE WITH DOWN
SYNDROME AS THEY ENGAGE IN
RESEARCH.
DR. MARY PIPPEN DIRECTS OUR TROY
ZOOM CLINIC.
AND MARY IS A HUGE CONTRIBUTOR.
SHE HAS THE FINGER ON THE PULSE
OF INDIVIDUALS OF THE DOWN
SYNDROME COMMUNITY AND ALWAYS
ASKED THAT CRITICAL QUESTION.
HOW IS THIS GOING TO ADVANCE THE
CARE OF OUR PATIENTS WITH DOWN
SYNDROME?
OUR SLEEP STAFF AND RESEARCH
TEAM AND WE HAVE ONGOING
PARTNERSHIPS WITH PARENT
ADVOCATES WHO AGAIN ADVISE US IN
WHAT IS IMPORTANT FOR OUR
COMMUNITY AND HOW CAN WE ENGAGE
THEM WELL.
AND I WANT TO ACKNOWLEDGE THAT I
THINK AS A PARENT AND RESEARCH
ERAS A PARENT A CHILD WITH DOWN
SYNDROME THAT I FORMED SOME
TRUST WITH BOTH MY CLINIC
PATIENTS AND IN THE RESEARCH
ARENA AND THAT HAS HELPED WITH
OUR PARTNERSHIPS.
SO ONE OF OUR PRIORITIES -- THIS
HAS BEEN TO FOCUS ON
COMMUNICATION DURING THE CONSENT
AND ASCENT PROCESS.
AND WE'VE BEEN DOING THAT
THROUGH THESE SOCIAL STORIES
WHICH I'LL SHOWCASE ON THE NEXT
SLIDE.
8 AS WELL AS THROUGH VIDEOS.
CAN YOU HIT IT AGAIN PLEASE.
I THINK THAT WE'RE GOING TO SHOW
A CLIP OF ONE OF THE -- VIDEOS.
PERHAPS AFTER THIS.
SO WITH THE VIDEOS AND SOCIAL
STORIES IT IS NICE THERE ARE NO
SURPRISES FROM MY CHILD.
SOME FEEDBACK FROM A PARENT' A
19-YEAR-OLD FROM PENNSYLVANIA.
WE THOUGHT THIS WAS A WIN.
THREE PEOPLE HOWEVER DECLINED
PARTICIPATION AFTER WATCHING THE
VIDEO AS PARENTS DID NOT THINK
THEIR CHILDREN COULD UNDERGO THE
SLEEP STUDY AND WHILE WE WERE
DISAPPOINTED BY THIS LOSS AND WE
WOULD NOT BE ABLE TO REPORT BACK
THAT WE ENROLLED THESE
INDIVIDUALS WE FELT LIKE IT WAS
A WIN BECAUSE WE FELT LIKE WE
HAD PROVIDED AN INFORMED STUDY.
SO HERE IS A CLIP OF THE VIDEO.
>> YOUR CHILD WILL ARRIVE HOME
FROM THE LAB WITH THE
ELECTRODES, DEVICE AND CHEST AND
BELLY BANDS ALREADY IN PLACE.
HIS OR HER HEAD WILL BE WRAPPED
IN GAUZE.
IF YOUR CHILD COMPLAINS OF IT
BEING ITCHY ENCOURAGE YOUR CHILD
TO TAP IT BUT NOT RUB.
IF YOUR CHILD COMPLAINS OF BEING
HOT OR OBSERVE YOUR CHILD TRYING
TO TOUCH THE ELECTRODES WIRES OR
GUATANAMO DISTRACTION WILL BE
THE BEST SOLUTION.
>> THANKS.
>> AND AS YOU CAN SEE THAT WAS
REALLY GEARED TOWARDS THE CARE
GIVER AS PART OF THE EDUCATION
BUT THAT I THINK WAS USEFUL FOR
THE FAMILY MEMBER TO HAVE A
BETTER SENSE OF WOULD THEIR
CHILD BE ABLE TO PARTICIPATE IN
THIS RESEARCH STUDY.
AND THERE IS MICHELLE WHO WORKS
NICELY WITH OUR POPULATION AND
OUR VIDEOS FEATURE PEOPLE WITH
DOWN SYNDROME.
SO THAT HOPEFULLY OUR COMMUNITY
FEELS MORE ENGAGED WE HAD
FEATURING SOMEONE WITH DOWN
SYNDROME.
I THINK WE JUST NEED TO KEY BACK
UP TO MY SLIDES.
>> YOU I'M SORRY DR. KELLY YOU
CAN'T SEE THE SCREEN?
>> I SEE A BLUE SCREEN.
>> OKAY.
ONE SECOND.
>> GREAT.
THANK YOU.
DOES MOVE ON TO THE NEXT SLIDE,
PLEASE.
SO HERE IS WHAT A SOCIAL STORY
MIGHT LOOK LIKE.
WE HAVE INDIVIDUAL PLACARDS
SHOWCASING VARIOUS COMPONENTS OF
THE STUDY PROCEDURES.
AND WE HAVE A STORY THAT GOES
ALONG WITH IT AND WE PERSONALIZE
IT BY INCLUDING THE CHILD'S NAME
AND WE'LL ALSO INCLUDE MICHELE'S
NAME WHO'S OUR SLEEP TECH HERE
AS WELL AS OUR RESEARCH
COORDINATOR'S NAME TO MAKE THE
PROCESS AS SEAMLESS AS POSSIBLE.
WHAT A TESH WILL DO IS LINE UP
THE CARDS AND IF POSSIBLE AND IF
IT'S POSSIBLE FOR THE STUDY FOR
THE CHILD TO LINE UP THE CARDS
SO THAT WE HAVE SOME OF SENSE OF
DO THEY UNDERSTAND WHAT THE
PURPOSE OF THE STUDY IS AND HOW
THE PROCEDURES ARE GOING TO
PROCEED.
AND THEN ALSO ASK QUESTIONS
ABOUT THE VARIOUS PLACARDS THAT
ARE INCLUDED IN THE STUDY.
I JUST WANT TO BRIEFLY REVIEW
THE SUPPLEMENT WHICH IS LOOKING
AT THE RELATIONSHIP OF
OBSTRUCTIVE SLEEP APNEA TO
POTENTIAL OUTCOMES AND THE POINT
HERE -- IS THAT WE WANT TO
ENGAGE AN OLDER POPULATION BUT
BECAUSE I WORK AT A CHILDREN'S
HOSPITAL WE DIDN'T HAVE ACCESS
TO SOMEONE WHO HAD EXPERTISE IN
ADULT NEURO COGNITIVE TESTING AT
THE CHILDREN'S HOSPITAL IN
PHILADELPHIA AND OUR PARTNERS
DIDN'T FEEL COMFORTABLE
ADMINISTERING TO ADULTS SO WE
SOUGHT OUT HELP.
SHE HAS BEEN WORKING TO TRAIN MY
RESEARCH COORDINATOR TO PERFORM
NEURO COGNITIVE TESTING IN
EMERGING ADULTS AND YOUNG ADULTS
WITH DOWN SYNDROME.
SO HERE ARE RECRUITMENT
DEMOGRAPHICS THUS FAR AND I
THINK THEY ARE REFLECTIVE OF THE
GENERAL RECRUITMENT EFFORTS.
WE HAD INITIALLY PLANNED TO
RECRUIT 35 INDIVIDUALS FOR 30
COMPLETERS BUT ENTHUSIASM AMONG
THE DOWN SYNDROME COMMUNITY WAS
SO GREAT THAT WE NOT ONLY
EXPANDED THE SAMPLE SIZE BUT
ALSO EXPANDED THE AGE ONCE WE
HAD CONFIDENCE THAT WE COULD USE
AT HOME SLEEP APNEA TESTING IN
OUR OLDER INDIVIDUALS.
RACE IS REFLECTIVE I THINK OF
WHAT OTHERS DEMONSTRATED EARLIER
AND AS IS ETHNICITY.
THESE WERE RECRUITED THROUGH
NONDOWN SYNDROME CONNECT
RESOURCES THAT WE TYPICALLY USE.
AND IN CONDUCTING THIS STUDY WE
BEGAN TO WORK WITH DR. BARTON TO
USE DOWN SYNDROME CONNECT.
AND HE SAID THAT WE WOULD FOCUS
ON THE PHILADELPHIA AREA.
THE TRI-STATE AREA BUT LOW AND
BE HOLD AS DEMONSTRATED BY THIS
MAP OF THE U.S. WE HAD PEOPLE
REACH OUT TO US FROM ACROSS THE
COUNTRY.
THIS INDIVIDUAL FROM SAN JUAN,
PUERTO RICO HAS AGREED TO JOIN
OUR STUDY AND WILL BE FLYING UP
IN I THINK LATE OCTOBER.
WE DID HAVE SOMEONE REACH OUT
FROM DUBLIN TO PARTICIPATE.
UNFORTUNATELY OUR RESOURCES
LIMITED THAT ACCOMMODATION.
REASONS PEOPLE HAVE DECLINED
PARTICIPATION HAVE INFORMED THE
NEXT STEPS.
WE'VE HEARD THIS BEFORE.
WE HAVE HAD SIX INDIVIDUALS WITH
LIMITED ENGLISH PROFICIENCY AND
WHILE WE HAVE AN INTERPRETER WE
DID NOT HAVE AN INTERPRETER WHO
COULD PERFORM NEURO COGNITIVE
TESTING IN SPANISH AND MANY OF
THE QUESTIONNAIRES THAT ARE
AVAILABLE IN ENGLISH ARE NOT
AVAILABLE IN SPANISH.
8 THOSE THAT HAVE REACHED OUT TO
US ARE PROHIBITIVE -- COST AND
TRAVEL -- A SINGLE MOTHER WHO
CARES FOR HER MOTHER WHO HAS
ALZHEIMER'S DISEASE AS WELL.
INCLUSION WAS GOING TO BE
PROHIBITIVE FOR HER.
AND THEN I'M GOING TO HIGHLIGHT
ONE OTHER COMMENT WHICH HAS
REALLY DRIVEN THE NEXT STEPS IN
OUR WORK.
AND THAT IS TO OPTIMIZE THE
CONSENT AND ASCENT PROCESS.
THIS WAS -- A PARENT OF AN
18-YEAR-OLD LIVING IN TEXAS SAID
NO ONE HAS EVER SPOKEN DIRECTLY
TO MY CHILD BEFORE.
EITHER IN THE CLINIC SETTING OR
RESEARCH SETTING.
THIS IS DISTURBING.
HOW CAN WE BETTER FORM A
STANDARD FOR ENGAGING
INDIVIDUALS WITH DOWN SYNDROME
AND THEIR FAMILIES IN OUR
RESEARCH.
AND THAT HAS BROUGHT ME TO
VICTORIA MILLER WHO'S NOW GOING
TO PRESENT.
>> THANK YOU, ANDY.
WE ALL AT LEAST IN THIS GROUP
CAN AGREE THAT CHILDREN AND
ADOLESCENTS AND INDIVIDUALS WITH
DOWN SYNDROME SHOULD HAVE A
VOICE IN DECISION MAKING ABOUT
RESEARCH PARTICIPATION AND
CLINICAL CARE BUT I WOULD LIKE
TO DIG IN A LITTLE BIT MORE TO
WHAT THAT MIGHT LOOK LIKE.
SO ASCENT REFERS TO THE
AGREEMENT TO PARTICIPATE AND
IT'S BASED ON THE MORALE
OBLIGATION TO NURTURE CHILDREN'S
MORALE GROWTH AND THEIR
DEVELOPING AUTONOMY.
KEY WORK FOCUS ON AUTONOMY.
IT IS NOT EQUIVALENT TO
AUTONOMOUS DECISION MAKING.
7 INSTEAD I THINK THE ASCENT
PROCESS PROVIDES THE OPPORTUNITY
FOR AN INDIVIDUAL A CHILD TO
CHOOSE OR BE INVOLVED TO THE
EXTENT THAT THAT CHILD IS ABLE.
AND WE CAN THINK ABOUT THE
ASCENT PROCESS CHANGING BASED ON
* DEVELOPMENT AND THE CHILD'S
CHARACTERISTICS AND ACROSS
DEVELOPMENT AS THE CHILD'S
CAPACITIES MATURE.
SO ASSENT IS REQUIRED FOR
RESEARCH PARTICIPATION BUT IT
CAN BE WAVED IF THERE IS THE
POSSIBILITY OF DIRECT BENEFIT
THAT IS ONLY AVAILABLE IN THE
RESEARCH CONTEXT OR IF THE CHILD
IS JUDGED IN CAPABLE OF ASSENT.
LOCAL IRBs ARE LEFT TO
DETERMINE WHEN AND HOW TO OBTAIN
AND ASSENT.
THERE IS A LOT OF VARIABILITY
OUT THERE AND WHAT IT LOOKS
LIKE.
THE NATIONAL COMMISSION FOR THE
PROTECTION OF HUMAN SUBJECTS DID
RECOMMEND THESE FOUR ELEMENTS.
THEY WERE RECOMMENDED NOT
REQUIRED.
ONE IS THE KNOWLEDGE THAT
PROCEDURES WILL BE PERFORMED.
TWO IS THE CHOICE TO FREELY
UNDER GO THOSE PROCEDURES.
THREE IS AN UNAMBIGUOUS
COMMUNICATION OF THE CHOICE AND
FOUR IS THE AWARENESS OF THE
OPTION TO WITHDRAW FROM THE
RESEARCH ONCE ENROLLED.
SO I THINK PARTIALLY BASED ON
THOSE ELEMENTS A LOT OF THE
RESEARCH IN THIS AREA OF CHILD
ASSENT IN THE CONTEXT OF
RESEARCH HAS FOCUSED ON
KNOWLEDGE OR WHAT I THINK OF AS
A COGNITIVE MODEL.
SO THIS PAST RESEARCH HAS
FOCUSED ON HOW MUCH CHILDREN
UNDERSTAND ABOUT THE DIFFERENT
LIMITS OF RESEARCH.
OTHER ASPECTS OF THEIR
CONFIDENCE OR DECISION MAKING
SKILL AND STUDIES THAT COMPARE
YOUTH CAPABILITIES TO THAT OF
ADULTS.
WHEN ARE CHILDREN COMPETENT TO
ASSENT?
THERE HAS BEEN LESS ATTENTION TO
WHAT I THINK OF AS THE
RELATIONAL ASPECTS OF ASSENT AND
DECISION MAKING IN GENERAL.
HOW DO PARENTS AND CHILDREN AND
RESEARCHERS INTERACT AND
COMMUNICATE ABOUT RESEARCH?
AND THINKING ABOUT THE
IMPORTANCE OF VOICE OF THE
CHILD.
I THINK THAT CHILDREN CAN BE
INVOLVED IN THE DECISION WITHOUT
NECESSARILY HAVING THE FINAL
SAY.
AND SO TO ME THE IMPORTANT
QUESTION IS HOW CAN WE INVOLVE
CHILDREN IN DECISIONS ABOUT
RESEARCH PARTICIPATION.
AND THEIR CLINICAL CARE IN
GENERAL IN WAYS THAT BENEFIT
THEM.
SO I LIKE TO THINK ABOUT THE
CONSENT OF DECISION MAKING
INVOLVEMENT AS BEING AN
APPROPRIATE CONSENT WHEN WE
THINK ABOUT ASSENT TO RESEARCH
PARTICIPATION.
THE GENERAL DEFINITIONS THE WAY
IN WHICH ADULTS AND CHILDREN OR
ADOLESCENTS ENGAGE IN EACH OTHER
IN DECISION MAKING AND PROBLEM
SOLVING.
SO YOU CAN SEE THIS DEFINITION
FOCUSES ON THE PROCESS AND NOT
NECESSARILY WHO HAS THE FINAL
SAY OR WHO MAKES THE DECISION.
THE CONSENT ALSO EMPHASIZES
PARENT AND CHILD AND PROVIDER
RESEARCH BEHAVIORS THAT ARE
HAPPENING AROUND DECISION
MAKING.
THE PARENT OR RESEARCHER CAN
TALK DIRECTLY TO YOUTH.
THEY CAN ASK THE YOUTH WHAT
QUESTIONS OR CONCERNS THEY HAVE.
ABOUT THE RESEARCH.
OR THE PROCEDURES.
77 THEY CAN CHECK THAT THE CHILD
* UNDERSTANDS WHAT WILL HAPPEN
IN THE RESEARCH STUDY.
AND ALSO THE CHILD CAN CERTAINLY
SPEAK UP BY SHARING AN OPINION,
ASKING QUESTIONS, SHARING
CONCERNS ABOUT THE RESEARCH.
AND SO FORTH.
7 SO THE CONSENT RECOGNIZES THAT
7 CHILDREN CAN BE MEANINGFULLY
INVOLVED IN DECISION MAKING IN
MULTIPLE WAYS REGARDLESS OF WHAT
WE DEFINE AS CAPACITY.
IT ALSO RECOGNIZES THAT PARENTS
AND PROVIDERS TYPICALLY RETAIN A
CRITICAL ROLE OF SOURCES OF
ADVICE FOR DECISION MAKING.
MULTIPLE STUDIES HAVE SHOWN THAT
MANY OR MOST CHILDREN AND
ADOLESCENTS WANT INPUT ABOUT
HEALTH RELATED DECISIONS FROM
THEIR PARENTS INCLUDING RESEARCH
DECISIONS.
YOUTH HAVE ALSO SAID THAT BEING
GIVEN A CHOICE WITHOUT THE
NECESSARY SUPPORT AND GUIDANCE
THAT THEY NEED CAN BE
BURDENSOME.
AND I JUST WANT TO TAKE A MOMENT
TO DIFFERENTIATE THE CONSENT OF
DECISION MAKING INVOLVEMENT FROM
SHARED DECISION MAKING.
I DO SEE THEM AS QUITE
DIFFERENT.
SDM DEVELOPED WITH RESPECT TO
THE ADULT PATIENT AND PROVIDER
RELATIONSHIP.
AND IT REQUIRES MUTUALITY
BETWEEN THE INDIVIDUALS.
SHARED INFORMATION GIVING AND
DECISION MAKING AND AGREEMENT
ABOUT THE DECISION.
AND THIS IS NOT NECESSARILY
APPLICABLE TO CHILD AND PROVIDER
RELATIONSHIPS.
OF COURSE, PARENTS PLAY A
SIGNIFICANT ROLE BOTH LEGALLY
AND PRACTICALLY IN DECISION
MAKING AND CHILDREN ARE STILL IN
THE MIDST OF DEVELOPING THEIR
DECISION MAKING AND
COMMUNICATION CAPABILITIES.
THEY ARE NOT EQUAL PARTNERS IN
DECISION MAKING SO I THINK
DECISION MAKING INVOLVEMENT IS
THE MORE APPROPRIATE CONSENT TO
BE THINKING B. -- ABOUT.
*.
SO DECISION MAKING -- RECOGNIZES
THAT CHILDREN STILL NEED TO
LEARN AND PRACTICE DECISION
MAKING IN MULTIPLE SETTINGS.
THERE ARE MULTIPLE POTENTIAL
BENEFITS OF INVOLVING YOUTH.
THESE INCLUDE THAT IT GIVES THEM
THE OPPORTUNITY TO OBSERVE AND
PRACTICE DECISION MAKING.
IT MAY ENHANCE THEIR OWN
SELF-EFFICACY RELATED TO
DECISION MAKING SPECIFICALLY OR
THEIR HEALTH CARE IN GENERAL.
IT MAY FACILITATE A POSITIVE
VIEW OF THE DECISION MAKING
PROCESS AND ALSO OF RESEARCH
PARTICIPATION MORE GENERALLY.
AND IT MAY ALSO FACILITATE TRUST
AND OPEN COMMUNICATION BETWEEN
YOUTH AND RESEARCHERS AND THE
MEDICAL TEAM.
AND IN FACT IN A PRIOR RESEARCH
STUDY THAT I DID WHEN YOUTH
PERCEIVED THAT RESEARCHERS
INVOLVED THEM MORE IN THE
DISCUSSION ABOUT RESEARCH
PARTICIPATION.
CHILDREN PERCEIVED MORE
FAIRNESS.
MORE SATISFACTION WITH THE
PROCESS.
THEY PERCEIVED THEY HAD A
GREATER VOICE IN DECISION MAKING
AS WELL AS REPORTING HIGHER
LEVELS OF HEALTH RELATED
DECISIONS SELF-EFFICACY.
AND I THINK ON THE FLIP SIDE WE
SHOULD CONTINUE TO RECOGNIZE THE
POTENTIAL BENEFITS OF CONTINUED
PARENTAL INVOLVEMENT IN DECISION
MAKING.
PARENTS UNDERSTAND THE BROADER
CONTEXT AND THE CHILD OR
ADOLESCENT'S VALUES AND GOALS.
PARENTS CAN PROVIDE INFORMATION
AND SUPPORT AND FACILITATING AND
IMPLEMENTATION OF THE DECISION.
AND IN TERMS OF DISPARITIES NOT
A LOT OF WORK HAS BEEN DONE IN
THIS AREA IN TERMS OF YOUTH AND
DECISION MAKING INVOLVEMENT.
BUT CERTAINLY WE KNOW AS HAS
BEEN REFERENCED BEFORE THAT FROM
RACIAL AND ETHNIC MINORITY
GROUPS EXPERIENCE DISPARITIES IN
INTERACTIONS WITH HEALTH CARE
PROVIDERS AND THIS LIKELY
INCLUDES THE RESEARCH CONTEXT AS
WELL.
THEY ARE UNDER REPRESENTED IN
RESEARCH.
I THINK THE ASSENT AND CONSENT
PROCESS MAY BE DIFFICULT FOR
INDIVIDUALS FROM ABLE ETHNIC
MINORITY GROUPS FOR A NUMBER OF
REASONS.
ONE, NEGATIVE PAST EXPERIENCES
WITH THE HEALTH CARE SYSTEM.
CERTAINLY RACISM, THE BIAS OF
PROVIDERS AND THE HEALTH CARE
SYSTEM.
A HISTORY OF RESEARCH MISCONDUCT
IN MARGINALIZED COMMUNITIES
ETC., ETC.
THE LIST COULD MOVE ON.
THE CONSTRUCT OF DECISION MAKING
INVOLVEMENT MAY HELP IN SOME
RESPECT WITH SOME OF THESE
CHALLENGES.
SO JUST WHAT ARE SOME OF THE
IMPLICATIONS OF WHAT I'VE TALKED
ABOUT IN TERMS OF DECISION
MAKING INVOLVEMENT.
ONE, I THINK WE NEED TO RESPECT
PARENT'S ROLE IN GUIDING
DEVELOPMENT AND SUPPORTING YOUTH
IN DECISION MAKING.
I THINK WE CAN THINK ABOUT
INVOLVING YOUTH IN MULTIPLE WAYS
IN DECISION MAKING ABOUT
RESEARCH PARTICIPATION SUCH AS
PROVIDING DEVELOPMENTALLY
APPROPRIATE AND TAILORED
INFORMATION.
SOLICITING THEIR OPINIONS,
CONCERNS AND QUESTIONS.
AND CHECKING THAT THEY
UNDERSTAND WHAT IS GOING TO
HAPPEN.
I THINK WE SHOULD ALSO
APPRECIATE THE WAYS IN WHICH THE
ASSENT PROCESS CAN SUPPORT YOUTH
DEVELOPMENT AND FOCUS ON THAT AS
THE GOAL AS OPPOSED TO GETTING
THE SIGNATURE AND CHECKING OFF A
BOX.
THIS PROCESS SHOWS RESPECT FOR
THEM AS DEVELOPING PERSONS.
IT MAY ENHANCE THEIR
SELF-EFFICACY AND REDUCE THEIR
STRESS ABOUT RESEARCH.
I THINK WE CAN ALSO RECOGNIZE
THE UNIQUE BARRIERS FOR YOUTH
AND FAMILIES FROM RACIAL AND
ETHNIC MINORITY GROUPS.
FOCUSING ON THE RELATIONAL
ASPECTS OF DECISION MAKING AND
ASSENT MAY INCREASE TRUST,
ENHANCE INTERACTIONS AND
INCREASE DIVERSE REPRESENTATION
IN RESEARCH.
BUT THERE HAS NOT BEEN A LOT OF
WORK LOOKING AT THAT.
AND FINALLY, WHAT ARE THE
IMPLICATIONS FOR RESEARCH IN
INDIVIDUALS WITH DOWN SYNDROME.
I DO THINK DECISION MAKING
INVOLVEMENT IS A REALLY HELPFUL
AND APPROPRIATE CONSTRUCT IN
THIS GROUP.
BECAUSE CARE GIVER INVOLVEMENT
MAY ALWAYS BE RELEVANT AND THERE
MAY BE THE NEED FOR ADDITIONAL
ADVOCACY OR INVOLVEMENT OF A
LEGALLY AUTHORIZED
REPRESENTATIVE LATER IN
ADULTHOOD.
SO WE REALLY DO NEED MORE
RESEARCH TO OPTIMIZE THE ASSENT
AND DECISION MAKING PROCESS AND
TO ENSURE INCLUSIVITY AND EQUITY
IN RESEARCH.
SO I THINK THIS IS WHERE I TURN
IT BACK TO ANDY TO TALK MORE
ABOUT HOW WE'RE HOPING TO DO
THIS.
ASCEND.
ASCENT.
-- WE SPECIFICALLY UNFORTUNATELY
HAVE NOT SOLICITED THE COMMUNITY
INPUT IN ORDER TO OPTIMIZE THESE
VIDEOS.
THESE STORY BOARDS AND CERTAINLY
HAVE NOT OFFICIALLY OBTAINED
INFORMATION REGARDING THIS
DECISION MAKING INVOLVED.
SO AS PART OF OUR ATTEMPTS TO
SORT OF IMPROVE THIS PROCESS
WE'RE NOW ENGAGING IN SOME
APPEAR ADDITIONAL WORK.
SO WE HAVE WE'RE BEGINNING TO
GATHER A FAMILY ADVISORY BOARD
WHO WILL GET SOME OFFICIAL
TRAINING LAY TRAINING IN WHAT IT
MEANS TO PURSUE CLINICAL
RESEARCH.
AND THEN WE WILL WITH VICTORIA'S
HELP SOLICIT PATIENT AND CARE
GIVE ERIN PUT USING INTERVIEWS
AND ONE OF THE FIRST CONCEPTS IS
BARRIERS TO RESEARCH.
WE'VE HEARD ABOUT THAT A FAIR
AMOUNT TODAY.
WE WILL ASK ABOUT EXPERIENCE
WITH CONSENT AND ASSENT EITHER
IN THE CLINICAL SETTI SET -- SEG
OR THE RESEARCH SETTING.
AND THE UTILITY OF USING A
DIGITAL PLATFORM FOR ASSESSING
AND UNDERSTANDING OF STUDY
PROCEDURES AND PURPOSE AND RISK
AND BENEFITS GETTING TO THE
COGNITIVE ASPECT OF THE ASSENT
PROCESS.
WE HAVE SOME GLOBAL DECISION
MAKING INVOLVEMENT TOOLS FOR
WHICH WE WOULD SEEK FEEDBACK SO
THAT WE ASK QUESTIONS
APPROPRIATELY OF OUR INDIVIDUALS
WITH DOWN SYNDROME.
AND CAPITALIZE ON THEIR LEARNING
STRENGTHS AND THIS IS ALL IN AN
EFFORT TO GET FEEDBACK ON THE
UTILITY OF THESE IN PROMOTING
SELF-EFFICACY AMONG OUR DOWN
SYNDROME COMMUNITY.
SO HOW ARE WE GOING TO DO THIS
AND ADDRESS DIVERSITY?
WE'LL RECRUIT BOTH LOCALLY AND
NATIONALLY.
WE HAVE A PLAN TO TARGET
SPECIFIC GEOGRAPHIC REGIONS SO
THAT WE ARE INCLUDING
INDIVIDUALS FROM THE SOUTH FROM
THE WEST, MIDWEST AS WELL AS THE
NORTHEAST -- HERE IN
PHILADELPHIA.
WE'LL RECRUIT FROM RURAL AND
URBAN POPULATIONS.
WE WILL SET LOWER LIMITS FOR
INDIVIDUALS OF VARIOUS RACES AND
ETHNICITIES.
WE WILL LARGELY FOCUS ON SPANISH
FOR OUR LIMITED ENGLISH LANGUAGE
PROFICIENCY BECAUSE AS I'VE
SHOWN YOU EARLIER THE VAST
NUMBER OF PEOPLE WHO COULD NOT
PARTICIPATE IN OUR STUDIES SPOKE
SPANISH.
WE'LL INCLUDE THE DS CONNECT IN
ORDER TO OPTIMIZE THIS
RECRUITMENT STRATEGY.
AND IF WE ARE UNSUCCESSFUL THAT
WAY WE'LL WORK WITH AN ON-LINE
MARKETING RECRUITMENT GROUP TO
RECRUIT ADOLESCENTS AND YOUNG
ADULTS OF SOUTH ASIAN ANCESTRY.
PLANNING TO PERFORM OUR SEMI
STRUCTURED INTERVIEWS IN PERSON
AND THROUGH VIRTUAL PLATFORMS SO
WE CAN INCLUDE INDIVIDUALS FROM
ACROSS THE COUNTRY.
THOSE INDIVIDUALS THAT LIVE IN
THE PHILADELPHIA AREA WE'LL
CONSIDER IN HOME ASSESSMENT.
BECAUSE FOR A NUMBER OF OUR
INDIVIDUALS WITH DOWN SYNDROME
THAT THE CLINIC ENVIRONMENT CAN
BE QUITE STRESSFUL AND WE MAY
NOT GET THE BEST FEEDBACK.
I WANT TO FOLLOW-UP ON THIS
TRAVEL AND LODGING AND
REIMBURSEMENT AND COMPENSATION.
FOR MANY INDIVIDUALS OF LOWER
SOCIOECONOMIC STATUS PUTTING OUT
THAT MONEY AHEAD OF TIME FOR GAS
OR THE TRAIN OR LODGING IS QUITE
PROHIBITIVE.
SO WE PREFER PREREIMBURSEMENT
AND FOR BABY-SITTING AND WAGES.
I THINK SOMETHING THAT HAS NOT
BEEN ADDRESSED OR THE TAX
IMPLICATIONS OF COMPENSATION.
7 AND WHAT I LEARNED TODAY IS
THAT WHEN THIS HAPPENED IS IF
SOMEONE IS COMPENSATED MORE THAN
$600 THAT IS A TAX LIABILITY AND
THE IRS WILL TAX ON THAT AND
THAT IS BASED UPON AN IRS
DECISION FROM 1990.
30 YEARS LATER THE CAP IS STILL
$600.
AND WE CAN ALL APPRECIATE OVER
THE PAST TWO YEARS INFLATION.
AND SO I THINK WE REALLY NEED TO
HAVE THE NIH WORKING WITH YOUS
UPDATE THIS CAP.
IN ADDITION IF INDIVIDUALS ARE
COMPENSATED MORE THAN $1200 THEY
ARE AT RISK FOR LOSING SOCIAL
SECURITY.
AND WE HAD ONE FAMILY WHO HAD
TWO SIBLINGS WITH DOWN SYNDROME
WHO HAD DECLINED PARTICIPATION
BECAUSE THEY WOULD BE ABOVE THIS
CAP.
IN ADDITION WE'VE HAD A NUMBER
OF INDIVIDUALS WHO HAVE NOT
WANTED TO GIVE THEIR SOCIAL
SECURITY NUMBERS BECAUSE THAT
WOULD LINK THEM TO THE IRS.
WE HAVE NOT INQUIRED AS TO WHY
BUT THAT HAS BEEN AN ISSUE
AND THEN ANOTHER WAY THAT WE'RE
ATTEMPTING TO ADDRESS DIVERSITY
IS THAT WE'RE -- WE ARE
CONVERTING -- WE ARE TRANSLATING
ALL OF OUR MATERIALS INTO
SPANISH.
WE WILL INCLUDE THE VOICE OF
INDIVIDUALS WITH LIMITED ENGLISH
PROFICIENCY SO THEY CAN GIVE US
FEEDBACK ON THE VIDEOS AS WELL
AS THE QUESTIONNAIRES IN SPANISH
THAT WE'RE BEING CULTURALLY
SENSITIVE AND INCLUDING VERBIAGE
THAT IS APPROPRIATE FOR WHAT
WE'RE TRYING TO COMMUNICATE.
WE ALWAYS HAVE A SPANISH
INTERPRETER BUT I WANT TO
ACKNOWLEDGE AGAIN MY RESEARCH
COORDINATOR WHO'S OBTAINING HIS
CERTIFICATE IN SPANISH
INTERPRETATION THROUGH THE
CHILDREN'S HOSPITAL OF
PHILADELPHIA.
AND THEN WE ALSO WANT TO MAKE
THIS WORK MORE GENERALIZABLE.
ALLOW THEM TO BE EASILY UPDATED
FOR USE IN ANOTHER STUDY.
WE WOULD LIKE FOR THIS TO BE THE
STANDARD FOR THE CONSENT AND
ASSENT PROCESS FOR RESEARCH
STUDIES ACROSS THE COUNTRY.
7 SO I WANT TO HIGHLIGHT -- I
DON'T WANT TO REPEAT BUT
CERTAINLY OFFSETTING THE
ECONOMIC -- BURDEN.
AND EDUCATING ABOUT TAX
LIABILITY.
BETTER TRAINING IN THE CONSENT
AND ASSENT PROCESS THAT IS
SENSITIVE TO THE DEVELOPMENTAL
NEEDS OF OUR COMMUNITY MEMBERS.
AND HAVE SOME BEST PRACTICES.
7 I WOULD LOVE TO SEE THAT
STANDARD QUESTIONNAIRES ARE
CENTRALLY -- THERE IS A
MECHANISM FOR TRANSLATION AND A
REPOSITORY FOR RESEARCHERS TO
ACCESS.
BECAUSE WE FEEL LIKE WE'RE
REPEATING THIS PROCESS OVER AND
OVER AGAIN.
I ALSO WANT US TO CONSIDER COST
TO THE STUDY TEAM THAT MAY NOT
HAVE BEEN APPARENT AS WE
PREPARED THE BUDGET AND WE'RE
BEING ASKED TO DO MORE AND MORE.
IN HOME VISITS, WITH GAS PRICES
CAN BE QUITE EXPENSIVE AND WHAT
YOU CANNOT SEE ON THE BOTTOM OF
THIS SLIDE IS THAT AS PART OF
THE TESTING STUDY IN ORDER TO
MINIMIZE THE BURDEN TO OUR STUDY
PARTICIPANTS IN HAVING TO RETURN
THAT DEVICE WE HAD PLANNED TO
USE A SHIPPING COMPANY BUT
BECAUSE THE DEVICE IS $20,000 IT
WAS GOING TO COST US $120 IN
SERVICE.
SO WE'VE BEEN USING A CARRIER
SERVICE TO PICK IT UP AND BRING
IT BACK AND THESE ARE OFTEN
COSTS THAT WE DON'T CONSIDER AS
WE'RE HOPING TO ENGAGE A DIVERSE
POPULATION AND GETTING TO NOT
JUST THE PHILADELPHIA AREA BUT
TO MORE RURAL ENVIRONMENTS.
SO I WANTED TO THANK YOU FOR
ALLOWING ME TO PARTICIPATE AND
FOR ALLOWING ME TO DRAG VICTORIA
ALONG FOR THIS.
MARISHKA, I'LL END NOW
>> ANDY AND VICTORIA THAT WAS
AMAZING AND WE WANT TO LEAVE
SOME TIME FOR Q&A.
THE LAST PRESENTATION WILL BE ME
AND I WILL ACTUALLY TRUNCATE IT
A LITTLE BIT BECAUSE I THINK WE
WANT TO HEAR MORE FROM YOU ALL
IN THE Q&A SESSION.
-- SO, THAT IS MY BEAUTIFUL SON
WHO'S THE INSPIRATION FOR MUCH
OF MY WORK.
>> DR. BROWN, ONE SECOND.
>> I'M GOING TO BE ABLE TO
SHARE.
TELL ME WHEN YOU SEE MY
PRESENTATION.
7 AND IN PRESENTATION MODE.
>> WE CAN SEE IT.
YES.
>> IF YOU WOULD LIKE -- ARE YOU
SHARING YOUR SCREEN OR ARE YOU
SHARING THE ACTUAL PowerPoint?
>> I'M TRYING TO SHARE THE
PowerPoint.
>> SO IF YOU CLICK THE SHARE
SCREEN OPTION -- THERE IS AN
OPTION TO SHARE
>> SO CAN YOU SEE THE
PRESENTATION?
>> WE CAN, YES.
>> IS IT IN PRESENTATION MODE OR
NOTES MODE?
>> IT'S IN PRESENTATION MODE.
>> OKAY.
WE'LL GO FROM HERE.
SO THANK YOU, EVERYONE.
AS MENTIONED I'M MAY WISH CAR -A
BROWN.
THERE HAS BEEN A LOT OF GOOD
INFORMATION.
WE HOPE TO HAVE A FULLER
DISCUSSION AFTER I WRAP IT UP.
7 SO I WANT TO STEP BACK -- WITH
MY PRESENTATION TO TALK ABOUT
THE BIGGER SPACE IN SLEEP HEALTH
DISPARITIES.
AND PERSONS LIVING WITH DOWN
SYNDROME.
FOR THE OVERVIEW I'LL GIVE YOU A
LITTLE BIT OF WHAT IS KNOWN OR
THE CURRENTLY AVAILABLE SPACE IN
SLEEP NDS.
I WANT TO TALK ABOUT THE
DISPARITIES.
IT'S SLEEP AS IT IS REQUIRED FOR
OPTIMAL HEALTH AND WELL-BEING.
SO I WANT TO HIGHLIGHT SOME OF
THAT.
THEN TO AN EMERGING AREA OF
SLEEP HEALTH DISPARITIES AND
THEN TALK A BIT ABOUT THE SLEEP
RESEARCH AT NIH.
AND PERSONS LIVING WITH DS.
SO SLEEP IS REALLY REQUIRED AS I
SAID FOR OPTIMAL HEALTH AND
WELL-BEING FOR ALL OF YOUR
SYSTEMS.
IT'S CONNECTED TO SO MANY
THINGS.
IT CANNOT BE DISTINGUISHED FROM
YOUR HEALTH.
SO SLEEP IS REQUIRED FOR YOUR
DEVELOPMENT AND COGNITIVE
PROCESSES.
IT'S ALSO REQUIRED FOR
MAINTAINING A HEALTHY WEIGHT.
AS WELL AS OPTIMAL HEALTH AND
PERFORMANCE.
DEEPER STAGES OF SLEEP PLAY AN
IMPORTANT ROLE IN LEARNING BY
PROMOTING CONSOLIDATION AND
INTEGRATION AND THESE
SIGNIFICANTLY AFFECT BEHAVIOR.
SO NOT HAVING GOOD SLEEP
UNDERMINES DEVELOPMENT AND COULD
BE A BURDEN FOR LIFE.
AND SO SLEEP IN PERSONS WITH
DOWN SYNDROME LOOKING ACROSS THE
LIFE-SPAN AND IN PEDIATRICS
RESEARCHERS HAVE FOUND THAT
SLEEP PROBLEMS WERE
SIGNIFICANTLY GREATER IN
CHILDREN WITH DS.
7 I'M NOT TELLING YOU ANYTHING
NEW.
BUT THOSE SLEEP PROBLEMS INCLUDE
SEVERAL THINGS SUCH AS
DIFFICULTY SETTLING IN AT
BEDTIME.
RESISTANCE TO BEDTIME.
ALSO INCLUDES SLEEP DISORDERS
SUCH AS INSOMNIA.
ADULTS LIVING WITH DOWN SYNDROME
HAVE A HIGH PREVALENCE OF
BEHAVIOR SLEEP DISTURBANCES.
RANGING FROM 13-86%.
ADULTS WITH DS HAVE LESS REM
SLEEP THAT IS NECESSARY FOR
LEARNING AND MEMORY AND ABOUT A
THIRD OF ADULTS EXPERIENCE
DIFFICULTIES INITIATING SLEEP.
THEY HAVE FREQUENT NIGHTTIME
AWAKENINGS.
TALKING IN SLEEP AS WELL AS
RESTLESS SLEEP.
SLEEP DISORDERED BREATHING OR
SLEEP APNEA IS ONE -- THE MOST
REPORTED SLEEP DISORDER IN
PEOPLE LIVING WITH DS.
SO WE'VE BEEN TALKING ABOUT
APNEA BUT WHAT EXACTLY IS IT.
SLEEP DISORDER BREATHING IS A
SPECTRUM FROM PRIMARY SNORING
ALL THE WAY TO O -- OBSTRUCTIVE
SLEEP APNEA.
IT COULD BE PARTIAL OBSTRUCTION
OR A COMPLETE OBSTRUCTION
BLOCKAGE DURING SLEEP.
IT'S PREVALENT -- LIFE-IN
PERSONS WITH DS * RANGING FROM
54-90%.
THE DIFFICULTY IN DIAGNOSIS --
THIS ARE EARLY SIGNS THAT ARE
MISSED AND SLEEP STUDIES CAN BE
CHALLENGING.
AND PRIMARY TREATMENTS SUCH AS
TONSILLECTOMIES AND C PAPS CAN
BE HELPFUL BUT ARE NOT CURES.
SLEEP DISORDERS INCREASE MEDICAL
RISKS SO IN ADDITION TO THE
NEURAL COGNITIVE CHALLENGES
THEY'VE BEEN LINKED TO INCREASE
IN HYPERTENSION.
YOU HAVE INCREASES IN OBESITY.
RISK TO OBESITY.
INCREASED RISK OF DIABETES,
STROKE AND DEMENTIA.
A LOT OF THE STUDIES THAT ARE
CURRENTLY LOOKING AT SLEEP IN
OLDER POPULATIONS ARE LIVING
WITH DS ARE FOCUSED ON DEMENTIA
OR ALZHEIMER'S DISEASE.
SO SHOWING LANGUAGE FROM WHAT
SUJATA PRESENTED EARLIER SLEEP
IS A CHALLENGE AND IN
MINORITIZED POPULATION.
RACIAL AND ETHNIC MINORITIES AS
WELL AS SOCIO ECONOMICALLY
DISADVANTAGED INDIVIDUALS.
AND COMPARISON TO THE WHITE
COUNTERPARTS.
THEY HAVE SHORTER SLEEP
DURATION, POOR QUALITY AS WELL
AS HIGH PERSISTENT AND SEVERE
AND UNDER DIAGNOSED SLEEP
DISORDERS.
AND SO I WANT TO TALK A LITTLE
BIT ABOUT THE AREA OR THIS
EMERGING SPACE OF SLEEP HEALTH
DISPARITIES.
THERE HAS BEEN A LOT OF
CONVERSATION TODAY ABOUT THIS
TOPIC.
THAT IS WHY WE'RE COMING
TOGETHER ABOUT INCLUSIVENESS
DEIA IN THE SPACE OF DOWN
SYNDROME RESEARCH.
SO THERE WAS A WORKSHOP PUT
TOGETHER BY NIH FROM 2018 TRYING
TO HAMMER HOME AND DEFINE WHAT A
SLEEP DISPARITY -- WAS.
SO THAT BEING THE DEFINITION IS
A DIFFERENCE IN ONE OR MORE
DIMENSIONS OF SLEEP HEALTH
INCLUDING REGULARITY, QUALITY,
ALERTNESS, TIMING, I WON'T HAVE
ENOUGH TIME TO GET INTO THAT,
BIOLOGICALLY APPROPRIATE TIME TO
SLEEP.
BUT GETTING AND HAVING THESE ON
A CONSISTENT BASES THAT
ADVERSELY AFFECT THE
DISADVANTAGED POPULATIONS.
WHICH ARE NOT ONLY RACIAL AND
ETHNIC MINORITIES BUT ALSO
SEXUAL AND GENDER MINORITIES,
DISADVANTAGED POPULATIONS AND
THERE WAS A LOT OF CONVERSATION
AT THE BEGINNING ABOUT
UNDERSERVED RURAL POPULATIONS.
HOWEVER, WHEN IT COMES TO SLEEP
HEALTH DISPARITIES AND PERSONS
LIVING WITH DS THERE IS VERY,
VERY LITTLE TO ALMOST NOTHING
THAT IS GOING ON IN THE RESEARCH
BASE SO IT'S A HUGE GAP.
SO I WANT TO GIVE YOU A LITTLE
BIT OF THE LANDSCAPE OF FUNDING
FOR SLEEP AND DS RESEARCH OVER
THE PAST 10 YEARS.
THERE IS AN ASTERISK BY 2022
BECAUSE WE HAVE NOT CLOSED OUT.
SO THE RESEARCH BETWEEN 2012 AND
2018 WAS LIMITED AND THEN FOR
ALL OF YOU WHO DON'T KNOW THERE
WAS SOMETHING SPECIAL THAT
HAPPENED IN 2018 WITH THE
FUNDING AND WITH THE SUPPORT
FROM THE INCLUDE PROJECT WE ARE
SEEING GROWTH IN THIS SPACE OF
SLEEP AND DOWN SYNDROME
RESEARCH.
HOWEVER, THERE IS REALLY A
CHALLENGE WHEN WE TALK ABOUT A
GEOGRAPHIC LOCATION AND
DISTRIBUTION OF WHERE THE
FUNDING IS HAPPENING.
IT'S NOT MUCH IN THE DATA THAT
WE'RE BASING IT ON.
IT WAS PUBLICLY AVAILABLE.
WAS CURRENTLY FUNDED SO WE SEE
THAT THERE IS ABOUT 62% THAT IS
HAPPENING IN THE PHILADELPHIA
SORRY -- IN THE PENNSYLVANIA AND
NEW YORK AREA AND TO BE FAIR A
LOT OF THAT FUNDING IS
CHILDREN'S HOSPITAL OF
PHILADELPHIA WHICH HAS BEEN
DOING AN AMAZING JOB.
BUT I WANT TO POINT YOU TO THE
FACT THAT THERE IS VERY LITTLE
GOING ON IN THE SOUTHEAST AND
THE SOUTH UNITED STATES WHERE WE
KNOW DISPARITIES AND HEALTH
PARTICULARLY FOR UNDER
REPRESENTED POPULATIONS ARE
HAPPENING.
SO THERE IS A LOT OF OPPORTUNITY
FOR GROWTHS IN THAT AREA.
WHEN WE LOOK AT THE AWARDS THAT
WERE FUNDED THERE ARE CERTAINLY
SEVERAL AREAS THAT POP OUT FOR
WHAT WE ARE THE APPLICATIONS
AGAIN THAT HAVE BEEN FUNDED IN
THE PEDIATRIC SPACE.
IN AGING THERE.
ARE APPLICATIONS LOOKING AT
DEMENTIA AS WELL AS LONG
RESEARCH.
COVERING THE SLEEP APNEA AND
SLEEP DISORDER BREATHING SPACE
AS WELL AS A STUDY LOOKING AT
EPIDEMIOLOGY AND LONGITUDINAL
STUDIES WHICH WE KNOW IS
CRITICAL IN THE STUDY OF PERSONS
LIVING WITH DOWN SYNDROME.
SO THERE IS AN EVOLUTION BUT
WHAT YOU DON'T SEE IS
DISPARITIES.
BUT THERE IS AN EVOLUTION OF
SLEEP RESEARCH THAT HAS OCCURRED
OVER THE PAST 10 YEARS WHERE
WE'RE SEEING MORE APPLICATIONS
FOCUSING ON SLEEP AND HEALTH
DISPARITIES BUT FOR RECENT
APPLICATIONS WE'RE SEEING SOME
OF THE OVERLAPPING SPACES AND
RESEARCH IN PERSONS WITH DOWN
SYNDROME.
BUT AGAIN, THERE COULD ALWAYS BE
MORE.
THAT IS WHY WE'RE HAVING THIS
CONVERSATION TODAY.
AND THERE ARE PARTICULAR
RESEARCH GAPS IN AREAS OF FOCUS
THAT WE WOULD LIKE THE COMMUNITY
-- THAT WE FOUND THAT THE
COMMUNITY COULD BE PAYING
ATTENTION TO.
AND SO AGAIN WITH THE
OPPORTUNITIES WE ARE NOW SEEING
AN INCREASE IN THE NUMBER OF
PUBLICATIONS AND THE NUMBER OF
AREAS AND THE SPACE BUT ONE OF
THE THINGS THAT WE NOTICED AGAIN
WHEN WE LOOKED THROUGH THE
RESEARCH AND HAVE CONVERSATIONS
LIKE THIS WHEN WE ATTEND
WORKSHOPS AND TALK TO THE
INVESTIGATORS WE SEE CLEAR GAPS
IN THAT SPACE AND I WANTED TO
OUTLINE A FEW SELECTED GAPS OR
FUTURE RESEARCH OPPORTUNITIES IN
THE SPACE OF SLEEP HEALTH
DISPARITIES AS IT RELATES TO
PERSONS LIVING WITH DOWN
SYNDROME.
SO, AGAIN FIRST OF ALL THERE IS
RESEARCH IN THE SPACE OF SLEEP
AND HEALTH DISPARITIES AND
PERSONS LIVING WITH DS ACROSS
THE LIFE-SPAN.
THERE WAS LIMITED DATA AND FEW
STUDIES THAT WERE GOING ON IN
ADULTS WITH DS OUTSIDE OF OSA.
ALSO WE ARE NOT REALLY SEEING
ANY APPLICATIONS JUST YET
LOOKING AT SEX AND GENDER
DIFFERENCES IN SLEEP DISORDERS
IN THIS POPULATION.
7 AND THERE ARE ONLY A LIMITED
NUMBER OF PUBLICATIONS AND WE
ARE -- EXCITED TO SEE RESEARCH
IN THE SPACE IN THE STUDY OF
CIRCADIAN RHYTHMS IN PERSONS
LIVING WITH DS.
THE REASON WE'RE HAVING THIS
WORKSHOP AND THIS CONVERSATION
IS BECAUSE NOT FACTORING IN DI
MEANS THAT YOU HAVE INCOMPLETE
DATA. I WOULD ARGUE THAT IT'S
POOR SCIENCE AND THAT IT COULD
TRULY IMPACT MEDICINE AND
CLINICAL CARE.
SO WITH THAT I WILL STOP AND
THEN WE WILL OPEN UP THE PANEL
FOR Q&A.
SO THANK YOU.
SO IF ALL OF THE PANELISTS COULD
TURN ON THEIR CAMERAS.
7 AND BE PREPARED FOR QUESTIONS
AND SO DO WE HAVE ANY QUESTIONS
IN THE CHAT?
I ALWAYS HAVE LOTS OF QUESTIONS
AND SO I'M NOT SEEING ANYTHING
JUST YET.
I ALSO DON'T SEE ANY HANDS BUT
THAT IS OKAY.
I ALWAYS HAVE LOTS AND LOTS OF
QUESTIONS.
OKAY CHIDANAND.
I'LL HOLD MY QUESTION.
>> THANK YOU FOR THE FANTASTIC
SESSION AND REALLY WE'RE ALL
PASSIONATE *.
SO MY QUESTION IS FOR DR. MILLER
AND DR. KELLY.
DO YOU SEE ANY DIFFERENCES IN
THE ASSENT PROCESS WHEN YOU ARE
TRYING TO RECRUIT UNDER
REPRESENTED GROUPS.
MEANING ARE THE CHILDREN FIRST
OF ALL BECAUSE THEY HAVE NOT
BEEN PARTICIPATING IN A LOT OF
RESEARCH DO YOU HAVE TO BE AWARE
OF THAT AND GIVE MORE
INFORMATION TO THE FAMILIES AND
THE CHILD FOR THE ASSENT
PROCESS.
SO DIFFERENCES IN ASSENT
DEPENDING ON WHO YOU'RE TRYING
TO RECRUIT AND THEIR BACKGROUND.
>> VICTORIA DO YOU WANT TO START
>> SURE.
I HAVE FACED MORE CHALLENGES OF
HOW I THINK ABOUT DESIGNING THE
RESEARCH TO BEGIN WITH.
I HAVE NOT WORKED WITH
INDIVIDUALS WITH DOWN SYNDROME
BUT IN MY OTHER WORK LOOKING AT
CHRONIC MEDICAL CONDITIONS FOR
EXAMPLE I'VE JUST STARTED TO DO
SOME WORK WITH SICKLE-CELL
DISEASE AND ONE OF THE
REQUIREMENTS OF MY STUDY WAS
THAT TEENS AND THEIR PARENTS
ENROLLED AND PARTICIPATED
TOGETHER.
WELL A LOT OF THOSE OF THE
FAMILIES THE YOUTH ARE ATTENDING
THE VISIT WITH AN OLDER SIBLING
OR ANOTHER FAMILY MEMBER OR EVEN
ON THEIR OWN SO THE WHOLE BASES
OF MY STUDY IS LOOKING AT THE
DIOB AND THAT IS NOT RELEVANT TO
THAT GROUP * SO I HAVE TO TAKE A
STEP BACK AND THINK ABOUT
DESIGNING THE RESEARCH STUDY AND
THE INCLUSION AND CRITERIA
DIFFERENTLY BASED ON MORE
DIVERSE GROUPS THAN I'VE LOOKED
AT IN THE PAST.
IT'S HUMBLING.
THAT IS JUST ONE EXAMPLE THAT IS
BROADER THAN THE ASSENT PROCESS
BUT I THINK RELEVANT AS WELL.
>> I WOULD JUST -- I WAS COMING
FROM MY PERSPECTIVE OF TALKING
WITH FAMILIES WHERE WE'RE TRYING
TO RECRUIT THEM TO DS CONNECT
AND TALKING ABOUT THE REGISTRY.
WHAT I'VE FOUND IS THE
CONVERSATION IS VERY DIFFERENT
WHEN I'M TALKING TO FAMILIES WHO
HAVE TRADITIONALLY NOT
PARTICIPATED IN RESEARCH AND THE
WHOLE CONSENT OF ON-LINE
REGISTRY IT SOUNDS SCARY.
TO MODIFY -- MY -- THE
INFORMATION I'M SHARING WITH THE
FAMILIES DEPENDING ON WHO I'M
CONVERSING W AND THERE ARE SOME
QUESTIONS IN THE CHAT COMING IN.
>> THERE ARE SEVERAL COMING INTO
THE CHAT SO FIRST WE WOULD LIKE
TO ASK DR. CORBETT, CAN YOU GIVE
US AN UPDATE --
>> SURE.
THANK YOU FOR THE QUESTION.
THE INCLUSION OF INDIVIDUALS
WITH DISABILITIES HAS BEEN AT
THE FOREFRONT OF THE DISCUSSIONS
AT NIH.
I THINK THERE ARE A NUMBER OF
DRIVERS FOR THIS.
IT'S ALWAYS BEEN IMPORTANT BUT I
THINK A COUPLE OF THINGS THAT
ARE MOVI MOVING THAT CONVERSATIN
FORWARD WE FOUND THAT INCLUSION
OF INDIVIDUALS OF CO-MORBIDITIES
IS A BIG REASON WHY WE DON'T
HAVE OLDER INDIVIDUALS IN
RESEARCH.
AS WE DRILL DOWN LOOKING AT
INDIVIDUALS WITH DISABILITIES
WHO ARE OFTEN EXCLUDED FROM
RESEARCH BECAUSE OF INCLUSION
AND EXCLUSION CRITERIA THAT ARE
QUITE NARROW.
WE ALSO HAVE BEEN LOOKING AT
THIS IN LIGHT OF THE COVID-19
PANDEMIC IN WHICH WE SAW THE
DEVASTATE IS IMPACT OF COVID-19
ON INDIVIDUALS WITH DISABILITIES
PARTICULARLY INDIVIDUALS WITH
INTELLECTUAL DISABILITIES.
IF WE DON'T HAVE PEOPLE WITH
DISABILITIES IN OUR RESEARCH WE
DON'T UNDERSTAND WHY THINGS WHY
CONDITIONS AFFECT PEOPLE
DIFFERENTLY.
HOW TREATMENTS MAY WORK
DIFFERENTLY.
IT'S IMPORTANT IN TERMS OF
MOVING FORWARD.
I THINK THAT OUR FOCUS HAS BEEN
ON LOOKING AT THE BARRIERS AND
HOW TO OVERCOME THEM.
WE FIND THAT WHAT WORKS BEST FOR
ONE GROUP MAY BE A BEST PRACTICE
FOR EVERYONE BUT THAT'S NOT
ALWAYS THE CASE.
I APPRECIATE THE INPUT AND THE
OPPORTUNITY TO BE HERE AS WE
CONTINUE TO THINK ABOUT THIS.
AND REALLY ENCOURAGE YOU TO KEEP
THIS CONVERSATION GOING.
BECAUSE THIS IS A REALLY
CRITICAL POINT THAT WE NEED TO
ADDRESS AND THAT WE JUST AREN'T
I THINK WE'RE NOT QUITE WHERE WE
NEED TO BE IN TERMS OF THE
INCLUSION OF INDIVIDUALS WITH
DISABILITY IN RESEARCH.
IT'S A PARADIGM SHIFT AND WE
NEED TO KEEP THE CONVERSATION
GOING.
>> THANK YOU SO MUCH,
DR. CORBETT.
AGREED.
THERE IS A QUESTION -- DIRECTED
TO DR. ROSSER.
DOES ALL OF US INCLUDE UNDER 18
AND INDIVIDUALS WITH ID?
I THOUGHT THESE GROUPS WERE
EXCLUDED.
HAS THIS CHANGED?
>> CURRENTLY IT HAS NOT.
WE'RE NOT ENROLLING ANYONE UNDER
THE AGE OF 18 RIGHT NOW BUT THE
HOPES ARE TO START ENROLLING
CHILDREN INITIALLY FROM THE AGES
OF BIRTH TO SIX.
BY THE END OF 2023.
POSSIBLY END OF 24.
THE PROGRAM IS LOOKING TO HIRE
AN EXECUTIVE DIRECTOR FOR
PEDIATRIC ENROLLMENT.
THERE IS NOT AN A SENT PROCESS
IN PLACE YET.
SO HOPEFULLY WE'LL SEE THAT
COMING IN THE NEXT FEW YEARS AS
WELL.
>> THANK YOU.
ALSO DIRECTED TO YOU.
YOU SHOWED SOME PIE CHARTS
REGARDING PARTICIPANT
DEMOGRAPHICS AND DOWN SYNDROME
AND THEN I LOST THE QUESTION
BECAUSE THERE ARE LOTS OF
COMMENTS.
7 -- MY COMPUTER I -- IS ACTING-
>> IF I'M NOT ABLE TO GRAB IT
QUICKLY AND PUT IT IN THE CHAT
I'LL MAKE SURE WE HAVE IT TO
SEND OUT
>> THE THANK YOU FOR THAT.
SO I DID HAVE A COUPLE OF
QUESTIONS.
WE'RE WAITING FOR MORE QUESTIONS
TO COME THROUGH THE CHAT.
AND IT WAS THE FIRST ONE WAS FOR
DR. ROSSER.
SO THERE WAS THIS WAS FOR DR. --
KELLY.
ONE OF THE THINGS THAT WAS
REALLY INTERESTING THAT YOU SAID
WAS ABOUT THE NEURO COGNITIVE
QUESTIONNAIRES AND WHO CAN
ADMINISTER THE TEST PARTICULARLY
AROUND LANGUAGES.
THERE WAS A CONVERSATION EARLIER
IN THE DAY ABOUT THE TEST GOING
TO DIFFERENT LANGUAGES WHETHER
IT WAS SPANISH OR OTHERS.
IS THERE A GROUP OF PEOPLE THAT
CAN ADMINISTER THE TEST.
DO WE NEED TO RAISE AWARENESS OR
TRAIN MORE PEOPLE TO BE ABLE TO
ADMINISTER THESE TESTS IN
POPULATIONS WITH DIFFERENT
LANGUAGES?
I WANT TO GET MORE FROM YOU ON
THAT TOPIC.
>> ABSOLUTELY.
SO WE OBVIOUSLY WANTED TO
INCLUDE A DIVERSE POPULATION.
AND TYPICALLY AT CHOP WHEN WE'RE
GOING TO DO NEURO DEVELOPMENTAL
WORK WE WORK WITH ONE OF THE CTA
FUNDING COURSE WHERE THERE ARE
NEURO PSYCHOLOGISTEST AND
DEVELOPMENTAL SPECIALIST WHO
WORK WITH OUR YOUTH.
WE WERE LOOKING AT
QUESTIONNAIRES AND DOING SOME IN
PERSON INTERACTIONS WITH
INDIVIDUALS WITH DOWN SYNDROME
WHO ARE LARGELY ADULTS.
OUR PEDIATRIC TEAM DID NOT FEEL
COMFORTABLE ADMINISTERING
QUESTIONNAIRES AND TEST A
BATTERY THAT WAS GEARED TOWARD
DEMENTIA.
BECAUSE THEY DON'T HAVE OFFICIAL
TRAINING.
SO, THAT IS WHY WE IDENTIFIED
DR. -- LYDIA -- AT HOPKINS WHO
DOES THIS HYBRID BETWEEN
PEDIATRIC AND ADULT AND SHE WAS
ABLE TO TRAIN OUR TEAM MEMBER.
OUR TEAM MEMBER IS NOT CURRENTLY
FLUID IN SPANISH SO COULD NOT
ADMINISTER THESE BATTERIES NOT
ONLY BECAUSE SOME OF THE
QUESTIONNAIRES ARE IN SPANISH
BUT THERE IS INTERACTION THAT
HAPPENS.
CAN YOU SMELL THIS?
DOES IT SMELL LIKE CLOVES.
ALTHOUGH I DON'T THINK WE SHOULD
BE USING CLOVES.
WE HAVE SHOULD USE CINNAMON.
I DON'T THINK MANY PEOPLE WOULD
BE ABLE TO IDENTIFY CLOVES.
THERE IS SOME CULTURAL
SENSITIVITY.
SO WE TRAINED ATEESH TO CONDUCT
THIS TESTING IN OUR YOUNG ADULTS
WITH DOWN SYNDROME.
I DO THINK THERE IS A REAL NEED
TO BE ABLE TO EXTEND THIS TO
OTHER PEOPLE WHO DO HAVE
LANGUAGES OTHER THAN ENGLISH SO
WE CAN DO A BETTER JOB SERVING.
I IMAGINE PEOPLE ACROSS THE
COUNTRY WHO HAVE VARIOUS FORMS
OF PERHAPS DEMENTIA OR NEURO
COGNITIVE ISSUES.
I DON'T KNOW IF I ANSWERED THE
QUESTION BUT WE DO NEED TO MAKE
THIS MORE AVAILABLE TO PEOPLE.
>> THANK YOU FOR THAT.
THERE IS ANOTHER QUESTION FOR
BOTH YOU AND DR. MILLER.
IS THERE CONCERN THAT DURING THE
ASSENT PROCESS DISCUSSION
CHILDREN OR THOSE WITH DOWN
SYNDROME MAY SAY NO AND SHUT
DOWN AN OPPORTUNITY TO
PARTICIPATE BEFORE THEY CAN BE
ENGAGED IN THE PROCESS?
ALSO HOW AGAIN MY COMPUTER IS --
HOW ARE YOU PLANNING ON HAVING
THE CHILD OR PERSON WITH DS
PARTICIPATE?
>> I CAN JUMP IN ON THIS.
THAT IS AN OPPORTUNITY TO PAUSE
AND TAKE SOME TIME AND EXPLORE
THE INDIVIDUAL CONCERNS.
AND POTENTIAL REASONS FOR SAYING
NO.
AND TO ENGAGED IN A
CONVERSATION.
I THINK YOUTH IN PARTICULAR NEED
MORE TIME IN THIS PROCESS OF
DECISION MAKING THAN WE OFTEN
HAVE OR HAVE AVAILABLE US TO IN
A RESEARCHER BUSY CLINICAL
SETTING.
AND I THINK IT POINTS TO CONSENT
AND ASSENT AS A PROCESS OVER
TIME SO THERE MIGHT BE AN
INITIAL NO WITH AN OPPORTUNITY
TO HAVE A CONVERSATION OR
REENGAGE AT ANOTHER TIME TO SEE
IF THINGS HAVE CHANGED.
ULTIMATELY I BELIEVE THAT EVEN
IF ASSENT IS WAIVED WE HAVE TO
RESPECT IT AND IF SOMEONE DOES
NOT WANT TO PARTICIPATE WE
RESPECT THAT.
ANDY, DO YOU HAVE THOUGHTS
>> I WOULD ECCO THAT AND THE WAY
THAT WE'VE * APPROACHED THIS IS
TO HAVE A DISCUSSION WITH THE
CARE GIVER WHO CAN ALERT US AS
TO IF THERE WILL BE CHALLENGES
SO THAT WE'RE PREPARED FOR THE
CONVERSATION.
IF AN INDIVIDUAL WITH DOWN
SYNDROME IS NOT READY TO
PARTICIPATE WE ALWAYS SAY YOU
ARE WELCOMED TO COME BACK AND IN
OUR CURRENT RESEARCH STUDIES
WE'VE ACKNOWLEDGED THAT THERE
MAY BE SOME CHALLENGES FOR
INDIVIDUALS WITH DOWN SYNDROME
TO BE INCLUDED BUT WE STILL
THINK THAT CARE GIVER VOICE IS
REALLY IMPORTANT.
BECAUSE SOME OF THE THINGS THAT
WE'RE ADDRESSING ARE FEASIBILITY
AND ACCEPTABILITY.
SO THE CARE GIVER CAN PROVIDE
THAT FEEDBACK FOR WHAT WERE THE
CHALLENGES.
HOW COULD WE HAVE DONE THIS
PERHAPS BETTER?
WAS THERE SOME WORD CHOICES THAT
WOULD HAVE HELPED.
I WILL ALSO ACKNOWLEDGE THAT FOR
SOME OF OUR STUDY PARTICIPANTS
THEY HAD MORE ANXIETY AFTER
VIEWING THE VIDEO.
AND SO THIS IS ONE OF THE
REASONS THAT WE'RE PURSUING THIS
STUDY TO LOOK TO GET FEEDBACK
BECAUSE OF THAT ANXIETY THAT WAS
PROVOKED.
IN ADDITION, PARENTS HAVE
SUGGESTED THAT THE YOUNGER
CHILDREN PROBABLY WILL DO BETTER
WITH STORY BOARDS AND THE SOCIAL
STORIES WHEREAS THE OLDER TEENS
AND YOUNG ADULTS DO BETTER WITH
VIDEOS.
BUT WE HAVE NOT COLLECTED THAT
DATA SYSTEMATICALLY.
>> THERE IS A GREAT COMMENT IN
THE CHAT.
IT SAYS NOT ONLY ADMINISTERING
IN OTHER LANGUAGES BUT ALSO
ENSURING THAT INSTRUMENTS ARE
DEVELOPED IN DIVERSE POPULATION
THAT'S IS THAT LANGUAGE APPLIES.
7 SLANG.
7 REGARDING CONSENT ASSENT
SHOULD WE ALSO BE TAKING AS
RESEARCH PROGRESSES AS DIFFERENT
PROCEDURES AS PART OF THE
PROTOCOL.
THAT IS MORE OF A COMMENT
>> I WAS COMMENTING THAT I FEEL
THAT PROTOCOLS THAT HAVE
DIFFERENT PROCEDURES BECAUSE I
LOVE THE IDEA OF YOU'RE USING
STORY BOARDS BUT ALSO MAKING
SURE THAT WHEN A CHILD OR A CARE
GIVE ERA SENT AND CONSENT -- A
CARE GIVER -- ASSENT CONSENT --
WHAT HAPPENS IF THE PROCEDURE
CHANGES.
WHEN WE'RE * HAVING THE
CONVERSATION IT'S NOT A ONE TIME
ASK OF THE FAMILIES.
I ALSO WANTED TO TOUCH ON WHAT
DR. KELLY YOU SAID ABOUT ANXIETY
AND I WONDER IF AS WE SEE MORE
AND MORE STORY BOARDS ARE USING
VIDEOS TO SHOW PROCEDURES TO
FAMILY AS THAT BECOMES THE NORM
IF THAT WOULD HELP LATER IN
REDUCING ANXIETY BECAUSE I DON'T
THINK FAMILIES ARE USED TO
SEEING THEY ARE USED TO HEARING
ABOUT THE PROCEDURE BUT I'M NOT
SURE IF THEY ARE USED TO SEEING
THE WHOLE PROCEDURE AND MAYBE
THEN THIS BECOMES A MORE OF A
NORM, THE ANXIETY MIGHT BE
ADDRESSED.
THAT WAS JUST WHAT I THOUGHT.
IT'S JUST A COMMENT.
NOT A QUESTION.
>> CAN I DO A FOLLOW-UP ON THAT?
THE CONSENT AND ASSENT SPACE
RESEARCH HAS FOCUSED ON ETHICAL
ISSUES WHICH VICTORIA IS THERE.
THERE IS ONLY RECENTLY EMERGING
WORK IN THE MULTI-MEDIA.
AND ONLY ONE STUDY THAT I COULD
FIND IN YOUTH WITH INTELLECTUAL
DISABILITIES.
AND A HANDFUL OF STUDIES JUST IN
CHILDREN USING VIDEO.
THERE IS A REAL OPPORTUNITY TO
EXPAND THIS FIELD.
AND I THINK IT HAS IMPLICATIONS
NOT ONLY FOR DOWN SYNDROME BUT
INDIVIDUALS WITH INTELLECTUAL
DISABILITIES BUT CHILDREN IN
GENERAL.
I CANNOT IMAGINE A 10-YEAR-OLD
WOULD UNDERSTAND.
>> I WOULD ECCO THAT.
*.
PROTOCOL ELSEWHERE LANGUAGE IS
AN ISSUE AND CULTURAL BARRIERS
OUR RESEARCHERS DO USE SOME
VIDEOS TO EXPLAIN THE PROCESS.
SO WE HAVE WE CAN LOOK TO
RESEARCHERS WHO HAVE BEEN
OPERATING IN THOSE AREAS AND
WORKING AROUND THE CHALLENGES
AND BARRIERS TO MAKE THE PROCESS
EASIER FOR THE FAMILIES.
7
>> WELL NOW THAT WE'RE AT THE
TOP OF THE HOUR I WANT TO THANK
OUR PANELISTS FOR SESSION THREE.
DR. CORBETT, DR. ROSSER AND
KELLY AND MILLER AND SUJATA.
>> THANK YOU TO ALL OF THE
SPEAKERS.
WE CAN HAVE AN OPEN DISCUSSION
FOR ALL OF THE SESSIONS TODAY
STARTING FROM SESSION ONE.
THE EXCELLENT PANEL PRESENTATION
-- BY MS. TARVER AND ALSO
SESSION 3.
WERE THERE ANY QUESTIONS OR
COMMENTS.
WE CAN GO THROUGH SESSION ONE
FIRST.
ANY QUESTIONS REGARDING SESSION
ONE?
SUMMARIES THAT WE DID FOR THE
FAMILIES AND THE RESEARCHERS.
AND THE EXCELLENT PRESENTATION
AND THE COMMUNITY ENGAGEMENT.
I DO NOT SEE ANY RAISED HANDS.
ARE THERE -- DR. ESPINOZA YOU
CAME OFF OF MUTE.
DO YOU HAVE ANYTHING TO ADD?
>> THANK YOU, SUJATA.
A LITTLE GRATITUDE FOR YOUR HARD
WORK AND PUTTING THIS TOGETHER.
THERE IS CLEARLY A LOT OF WORK
THAT NEEDS TO BE DONE BUT WE'RE
ON THE RIGHT TRACK AND HAVING
NOT ONLY THE -- FINDINGS BUT THE
AWARENESS.
IT'S GOING TO BE VERY HELPFUL.
AVENUE I ALREADY HAVE A DATE
WITH DOLORES IN NOVEMBER.
SO THE WORK IS HAPPENING IN
REALTIME.
7
>> YES.
I'M RE -- REALLY GRATEFUL TO HAE
REPRESENTATION FROM THE RURAL
COMMUNITIES.
AS I SHOWED YOU THE GRAPH THE
PIE CHART OF DS CONNECT.
DS CONNECT HAS BEEN -- NEXT YEAR
IS OUR 10thth
ANNIVERSARY.
AND NOW WITH WE ARE FORTUNATE TO
HAVE FUNDING -- WE CAN ADDRESS
THE GAPS.
SO OUR REGISTRY WE CONSTANTLY
TRY TO OUTREACH TO UNDERSERVED
POPULATIONS INCLUDING RURAL
COMMUNITIES AND WE WOULD LOVE TO
JOIN THE PARTY -- DR. ESPINOZA
IF YOU'RE ABLE TO.
SEVERAL OF OUR MEMBERS WERE ALSO
DOING THIS IS PRECOVID, THEY HAD
RESEARCH AWARENESS WEEKENDS
LOOKING AT THE MAP THE GAPS IN
THE MAP AND WHERE WE NEED TO DO
MORE OUTREACH.
AND OUTREACH IS A CONSTANT A
CONSTANT PROCESS.
AVENUE AS WE HEARD IN PANEL 2
THAT BUILDING THE TRUST TO THE
COMMUNITY HAPPENS OVER TIME.
IT'S NOT A ONE STOP OR JUST ONE
TIME ACTIVITY.
SO I THINK THIS WORKSHOP IS AS
YOU SAID IS ONE OF THE STEPS IN
THE RIGHT DIRECTION.
WE WILL BE FOLLOWING UP THIS
WORKSHOP WITH MORE MAYBE WEBINAR
OR SOMETHING FOLLOWING THIS
WORKSHOP TO KEEP THE DIALOGUE
GOING TO KEEP THE MOMENTUM
GOING.
BECAUSE AS I HAVE PRESENTED THE
STATUS QUO NEEDS TO CHANGE AND
IT'S ALL HANDS ON DECKING AND
RIGHT NOW WITH THE UNITE
INITIATIVE I KNOW ALL OF THE
OTHER ICs HAVE THEIR OWN THING
AND WE HAVE OUR STRIVE
INITIATIVE.
INCLUDE IS ALSO FOCUSING ON THE
DEIA ASPECTS AND TOMORROW THE
FIRST SESSION -- FOR TOMORROW WE
WILL BE SHOWING SOME OF THE
ACTIVITIES THAT WE HAVE BEEN
DOING AS PART OF INCLUDE TO
REALLY ENGAGE THE COMMUNITY,
INCREASE THE DIVERSE
PARTICIPATION.
SORRY.
DID SOMEBODY HAVE A COMMENT?
AND JUST TO MAKE SURE WHEN WE
SAID PARTICIPATION IT'S LOOKING
AT I DON'T WANT TO USE THE WORD
ECOSYSTEM BUT THE WHOLE
COMMUNITY THAT SUPPORTS DOWN
SYNDROME.
THE RESEARCH TEAM,
INVESTIGATORS, TRAINEES,
COORDINATORS.
SO REALLY APPROACHING THIS FROM
MULTIPLE DIRECTIONS.
7 AND WHAT I THOUGHT WAS VERY
INTERESTING SINCE WE DID THE
LISTENING SESSION FOR THE
FAMILIES AND RESEARCHERS THAT
WORK CLOUD BROUGHT UP A LOT OF
SIMILAR TOPICS THAT FAMILIES AS
WELL AS RESEARCHERS MENTIONED.
TRUST, TRANSPORTATION, FEAR.
UNDERSTANDING THE FEAR OF THE
PARTICIPANTS THAT WE'RE TRYING
TO ENGAGE.
IT MAY BE DIFFERENT FOR
DIFFERENT COMMUNITIES SO IT WAS
INTERESTING TO SEE THE
SIMILARITY OF THE BARRIERS AND
CHALLENGES THAT WE TRIED TO
COLLECT FROM THE LISTENING
SESSION.
-- ANY RAISED HANDS?I CANNOT SES
ON MY SCREEN.
WE CAN MOVE ON TO SESSION TWO IF
THERE ARE ANY ADDITIONAL
THOUGHTS AND FEEDBACK OR INPUT.
IF THERE ARE ANY THOUGHTS OR
FEEDBACK YOU MAY ALSO PUT IT
INTO THE CHAT.
THIS IS GOING TO BE SAVED AND
WILL BE PART OF THE SUMMARY.
I WOULD REALLY LIKE TO GIVE A
SHOUT OUT TO OUR FABULOUS
SELF-ADVOCATES.
THEY ARE VERY BUSY INDIVIDUALS
AND I APPRECIATE THEIR TAKING
TIME OUT OF THEIR SCHOOL AND
YADIRA IS VERY BUSY AND SHE IS
AN ENTREPRENEUR AND
PARTICIPATING IN OUR PANEL.
AND THEIR FEEDBACK WAS REALLY
SOMETHING THAT WE WILL BE TAKING
INTO ACCOUNT.
7 AND OF COURSE ALL OF THE
FAMILIES THAT PARTICIPATED AND
THE RESEARCHERS FOR THAT PANEL.
AND MA -- MARISHKA THANK YOU.
WE WILL HAVE A CHANCE TO
PARTICIPATE AGAIN TOMORROW AND
IF THERE IS ANY ADDITIONAL
THOUGHT IF YOU HAVE PLEASE PUT
IT IN THE CHAT AND LET US KNOW.
SEND US AN E-MAIL.
LINDA AND I ARE AVAILABLE TO
AGAIN USE YOUR FEEDBACK AND PUT
IT IN AN EXECUTIVE SUMMARY SO
THAT IT IS PART OF THE RECORD
AND WE CAN LOOK AT ACTIONS THAT
WE CAN TAKE.
SO IF I DON'T SEE ANYTHING IN
THE CHAT.
THANK YOU, MELISSA FOR THE
COMMENT.
AND WE ARE AGAIN GIVING A CHANCE
FOR THE FANTASTIC SESSION 3.
ANY ADDITIONAL QUESTIONS FOR
SESSION 3 SPEAKERS?
>> SUJATA I CANNOT FIGURE OUT
HOW --TO RAISE MY HAND.
I BROUGHT UP THIS ISSUE
REGARDING SOCIAL SECURITY AND
TAX LIABILITY.
IT HASH IN PLACE SINCE 1990.
IS THIS A CONVERSATION AT THE
NIH LEVEL TO BEGIN TO ADDRESS
THIS ISSUE AND TO RAISE THE
THRESHOLD?
>> THAT IS A VERY GOOD QUESTION.
YO-- EVEN IF NIH CANNOT FOLLOW-P
WHAT WE CAN DO IS NIH LEADS THE
DOWN SYNDROME CONSORTIUM.
108 WE HAVE A LOT OF NATIONAL
ORGANIZATIONS AND INTERNATIONAL
ORGANIZATIONS AS PART OF THE
CONSORTIUM.
SO IF THERE IS A TOPIC THAT WE
KNOW NEEDS TO BE ADDRESSED AND
IF THERE ARE POLICIES THAT WE AT
NIH MAY NOT BE ABLE TO FOLLOW --
MS. CORBETT HAS HER HAND RAISED.
SO MAYBE SHE HAS MORE
INFORMATION ON THIS.
WE'RE TRYING TO ADDRESS THE
DISPARITIES AND WE MAY HAVE TO
THINK OUTSIDE THE BOX.
7 IF WE HAVE NOT DONE SOMETHING
BECAUSE OF POLICIES MAYBE WE
HAVE TO ADHERE TO THE POLICIES
BUT MAYBE WE NEED TO EXPAND THE
CONVERSATION AND SEE IF THERE
ARE OTHER PARTNERS THAT WE COULD
COLLABORATE WITH TO ADDRESS
THESE ISSUES.
DAWN, DO YOU WANT TO ADD TO
THIS?
>> A LITTLE BIT.
I WOULD SAY THAT -- NIH DOESN'T
HAVE ANY DIRECT CONTROL OVER THE
IRS INCOME THRESHOLDS AND WHAT
IS CONSIDERED TO BE TAXABLE
INCOME.
BUT IT HASH UNDER A LOT OF
DISCUSSION BECAUSE AS I
MENTIONED THAT THEY CAN ALSO
LOSE THEIR BENEFITS FOR
PARTICIPATING.
7 THIS WAS DISCUSSED.
THERE WAS A MEETING ON THE
15th ON PARTICIPANT
COMPENSATION AND IT WAS
DISCUSSED IN THAT FORUM AS WELL.
ORHP IS LOOKING INTO -- A LOT OF
ISSUES REGARDING PARTICIPANT
COMPENSATION.
AND THIS IS ONE.
THE SECRETARY HAS BEEN VERY
ENGAGED IN THESE ISSUES.
SO THERE ARE CONVERSATIONS AT
THE HIGHEST LEVEL.
WHAT NIH CAN DO ITSELF PROBABLY
NOT A LOT BUT WE CAN AND WE ARE
TRYING TO ELEVATE THESE ISSUES
TO MAKE SURE THAT PEOPLE ARE
AWARE.
>> THANK YOU.
>> GREAT FEEDBACK, ANDY.
THIS IS -- WHAT WE GET AT THE
END OF THE WORKSHOP ARE SOME OF
THE ISSUE THAT'S WE HAVE NOT
HEARD BEFORE.
SO WHEN WE HEAR ABOUT THE ISSUES
AT LEAST WE CAN FOLLOW-UP AND
SEE -- WHAT CAN BE DONE.
IF NIH CANNOT TACKLE IT MAYBE
THE CONSIDERATION NEEDS TO
HAPPEN WITH SOMEONE ELSE.
APPRECIATE BRINGING THIS TOPIC
UP.
AND THANK YOU FOR THE REMINDER.
I MIDST FORGOT THAT I NEED TO
SPEAK SLOWLY.
ANY MORE QUESTIONS FOR SESSION
THREE?
AND I HAVE TO GIVE A SHOUT OUT
TO YOUR RESEARCH COORDINATOR,
ANDY -- WHEN YOU SAID HE IS ALSO
GETTING HIS CERTIFICATE SPANISH
LANGUAGE CERTIFICATE, THAT SHOWS
DEDICATION.
AND PASSION AND REALLY
EMPATHIZING WITH THE FAMILIES
THAT YOU REACH OUT TO.
SO I HAVE BEEN FORTUNATE TO WORK
WITH HIM ON TRYING TO CONNECT
THROUGH DS CONNECT.
YOU HAVE A GREAT TEAM THERE.
>> THANK YOU.
>> ANY MORE QUESTIONS ON SESSION
3?
I'M TRYING TO SEE IF ANYONE HAS
THEIR RAISED HANDS.
IF NOT TIME IS A BIG GIFT SO WE
WILL NOT GO ALL THE WAY UNTIL
5:30 -- BUT I NEED TO GIVE A BIG
SHOUT OUT TO AND I DON'T WANT TO
BUTCHER THE NAME -- MR. -- JOSE
AND MS. LAURA CASTRO WHO CAME TO
US THROUGH THE TRANSLATION
SERVICES AND WHO HAVE ACTUALLY
DONE LIVE SIMULTANEOUS SPANISH
INTERPRETATION AND I LEARNED
THAT WORD.
IT'S INTERPRETATION.
THEY ARE FOLLOWING WHAT WE'RE
SAYING AND INTERPRETING IT FOR
ABOUT 12 FAMILIES THAT NEEDED
THAT SERVICE.
SO REALLY GRATEFUL FOR THE NIH
OFFICE OF THE DIRECTOR -- TO
HELP US GET THIS SERVICE.
AND THANK YOU TO ALL OF THE
PARTICIPANTS FOR OF DAY 1.
SHOUT OUT TO THE SESSION CHAIRS.
MODERATOR.
MY PARTNER IN CRIME MS. LINDA
GARCIA WHO IS THE CO-LEAD OF
THIS WORKSHOP.
COULDN'T HAVE PULLED THIS OFF
WITHOUT HER INVOLVEMENT.
SO ALL GOOD THINGS COME TO AN
END BUT THERE IS ANOTHER HALF A
DAY TOMORROW.
SO AS A REMINDER TO THE SPEAKERS
IF YOU'RE ON TODAY PLEASE TRY TO
LOG IN 10-15 MINUTES BEFORE THE
TOP OF THE HOUR.
IT'S 12:00 P.M. EASTERN TIME SO
THE SPEAKERS PLEASE TRY TO JOIN
IN A LITTLE EARLY SO WE CAN HELP
YOU IF YOU NEED HELP WITH THE
SLIDES OR ANY TECHNICAL ISSUES.
THANK YOU SO MUCH AND WITH THAT
I WILL CLOSE DAY ONE AND SEE YOU
ALL TOMORROW -- NOON EASTERN.