>> THANK YOU FOR BEING HERE.
WE HAVE A NICE CROWD IN THE
ROOM FOR THIS CONCURRENT
SESSION.
ON THE MOBILE TOOLBOX.
WE HAVE FOUR SPEAKERS. THE
FORMAT WILL BE THAT EACH
SPEAKER HAS TEN MINUTES FOR
THEIR TALK.
THERE WILL NOT BE QUESTIONS AT
THE END OF EACH TALK.
BUT THEN AT THE END OF THE FOUR
TALKS THE SPEAKERS ARE GOING TO
ASSEMBLE ON STAGE HERE AND THEN
WE WILL HAVE SOME OPPORTUNITY
FOR QUESTIONS AND ANSWERS.
FOR THOSE WHO ARE HERE IN THE
ROOM, THERE'S A MICROPHONE.
AS YOU CAN SEE SORT OF HERE ON
THE STAGE LEVEL RIGHT AT THE
BOTTOM OF THE STEPS.
IF YOU WOULD, PLEASE COME TO
THE MICROPHONE TO ASK YOUR
QUESTION.
THE REASON IS BECAUSE WE DO
HAVE PEOPLE WHO ARE ATTENDING
VIRTUALLY, AS WELL AS THE FACT
THIS IS BEING VIDEOCAST BY NIH
AND WILL BE ARCHIVED FOR PEOPLE
TO BE ABLE TO ACCESS IN THE
FUTURE.
AND SO IT'S IMPORTANT THAT WE
ARE ABLE TO HEAR THE QUESTIONS
AND THEREFORE THE ANSWERS.
IF YOU WOULDN'T MIND DO THAT,
WE APPRECIATE IT.
ALL RIGHT, YOU ARE GETTING ME
AGAIN TODAY.
SUPPOSED TO BE MELISSA TREVINO,
SHE WAS UNABLE TO BE HERE SO I
WILL BE THE MODERATOR FOR THIS
SESSION.
JUST TO GO AHEAD AND GET
STARTED, OUR FIRST SPEAKER IS
LIHUA YAO.
HOW IN THE WORLD COULD I MESS
UP YOUR NAME?
LIHUA YAO FROM NORTHWESTERN
UNIVERSITY.
SHE WILL BE PRESENTING ON
MOBILE TOOLBOX, COGNITIVE
TESTS, VALIDITY AND RHODE
ISLAND -- RELIABILITY IN
THREE SAMPLES.
>> LIHUA YAO: THANK YOU FOR
COMING.
MY NAME IS LIHUA YAO FROM
NORTHWESTERN.
AND THIS MORNING YOU ALREADY
HAVE, I THINK, LARGER --
HOPEFULLY THIS SESSION IS --
YOU MET PROFESSOR DORIN ALREADY
TALKED TO YOU ABOUT MOBILE
TOOLBOX SO IT MAKES MY LIFE
MUCH EASIER.
I WILL TALK ABOUT MOBILE
TOOLBOX AND WHAT THE GROUP HAS
BEEN DOING REGARDING
RELIABILITY, VALIDITY AND
INTERNAL CONSISTENCY THROUGH
SEE SAMPLES.
MY PRESENTATION WILL HAVE
BACKGROUND MESSAGE, RESEARCH
DESIGN, RESULTS, INCLUSION,
DISCUSSION, AT THE END.
I THINK FROM YOUR MORNING
ATTENDING FROM DR. DORIN, THE
SCREEN SHOT MAY NOT BE
NECESSARY BUT I PREPARED THEM
JUST IN CASE BECAUSE WE ALREADY
SHOWED YOU WHAT EACH TEST IS
ABOUT.
SO MOBILE TOOLBOX IS APP-BASED
AND YOU CAN SELF-CONDUCT IT,
REMOTELY, THROUGH INDIVIDUAL
SMARTPHONE.
AND THERE ARE EIGHT ASSESSMENTS
THAT MEASURE LANGUAGE, WORKING
MEMORY, EPISODIC MEMORY,
EXECUTIVE FUNCTION AND
PROCESSING SPEED.
LISTEN TO THE AUDIO AND TYPE IN
THE WORD WHAT YOU DID HEAR.
FOR THE ASSESSMENT YOU GOT TO
SEE HOW IS THE TEST COMPARING
TO THE OTHER WITH SIMILAR
CONSTRUCT TESTS.
YOU GOT TO COMPARE WITH OTHER
STANDARD TESTS.
SO THE SAME THING HERE, WE USED
SAMPLE ONE WITH 92 ADULTS, AGE
20-84.
WE WILL LOOK AT THEIR VALIDITY
USING THIS TOOLBOX.
THE GOLD MEASURE WE HAVE IS
NIHTB V3, SO THE INDIVIDUALS
WERE GIVEN THIS TEST FIRST AND
ALSO OTHER GOLD STANDARD.
LATER WILL SEE THE TABLE, LOOK
AT THE RESULT AND YOU CAN SEE
WHAT OTHER MEASURES WERE USED.
AFTER THOSE STANDARD, THE
INDIVIDUALS WERE GIVEN MOBILE
TOOLBOX, MTB.
AND ALSO, THIS ONE, SAMPLE ONE,
IS LAB SETTING WITH IOS DEVICE.
WE WILL LOOK AT INTERNAL
CONSISTENCY.
WHEN YOU HAVE A TEST YOU HAVE
TO SEE HOW EACH INDIVIDUAL ITEM
THEY ARE BEHAVING.
THIS SHOULD BE CONSISTENT OR
MEASURED THE WHOLE THING THE
SAME WAY THE WHOLE TEST IS
MEASURED.
EACH TEST NEEDS TO GO THROUGH
THAT.
THE SAMPLE TWO COLLECT 1, 021
ADULTS AGE 18-90.
WE ARE GOING TO LOOK AT THEIR
INTERNAL CONSISTENCY.
AND ALSO FOR THE PERSON, EACH
INDIVIDUAL, THEY WERE GIVEN
NIHTB V3 COGNITIVE MEASURES
FOLLOWED BY SELF-ADMINISTERED
MTB.
THEN WE LOOK AT IMPACT, THIS IS
MOBILE TOOLBOX.
HOW IS THE SYSTEM IMPACT ON THE
ASSESSMENT, THE iPHONE AND THEN
ANDROID.
64% iPHONE.
AND TEST, RETEST, RELIABILITY.
YOU ARE GOING TO LOOK HOW THE
PRACTICE WILL IMPACT THE
INDIVIDUAL PERFORMANCE ON THE
ASSESSMENT.
SO THEREFORE STUDY 3 IS SAMPLE
3, COLLECT 168 PEOPLE FROM
BRAIN HEALTH REGISTRY, AGED
28-84.
AND THE PERSON WAS FIRST GIVEN
MTB REMOTELY, OF COURSE, AND
THEN AT THE STARTING IT'S
CALLED BASELINE.
AND AFTER TWO WEEKS THEY WERE
GIVEN THE SAME TEST.
AND THEN THIS IS ONLY COLLECTED
ON THE iPHONE DEVICE.
SO FOR VALIDITY, WE USED
PEARSON COEFFICIENT BETWEEN MTB
AND OTHER MEASURES.
IT'S KIND OF EXAMINING THE
LINEAR.
PEARSON/SPEARMAN.
AND ALSO THE DIFFERENCE BETWEEN
THE TEST SCORE AND THEIR AGE.
INTERNAL CONSISTENCY ALSO
THROUGH THE SAMPLE TWO, AND IN
SPLIT HALF, RELIABILITY --
ALPHA, ALL THOSE WERE USED.
AND THE TEST/RE-TEST
RELIABILITY, USING INTRA CLASS
CORRELATION.
ANY PACKAGE WILL GIVE YOU THE
VARIANCE FOR THE RANDOM EFFECT
AND TOTAL VARIANCE.
YOU TAKE THE RATIO, ICC, SO
IT'S QUITE EASY TO IMPLEMENT.
[CRONBACH'S ALPHA]
FOR SCORING, ANY ASSESSMENT YOU
WILL REPORT THE SCORE.
HOW DO I REPORT THEM?
WE HAVE THREE CATEGORY.
ERROR MATCHING AND SHAPE
COLORING USE RATE-BASED
RESPONSE TIME IS INVOLVED.
SHAPE COLORING YOU HAVE THE
RESPONSE AND ALSO HOW LONG IT
TAKES YOU TO RESPOND.
AND THESE TWO ASSESSMENTS. THE
NUMBER SYMBOL MATCHING AND ALSO
SEQUENCE, THEY USE NUMBER
CORRECT SCORE, BASICALLY TAKE
THE SUBMISSION OF THE SCORES.
AND ALSO ARRANGING PICTURES.
IT'S KIND OF NUMBER CORRECT
SCORE BUT NOT SUBMISSION OF
CORRECT SCORES, IT'S ADJACENT
PAIRS SCORE.
ALSO WE HAVE TWO TESTS WITH
COMPUTER ADAPTIVE TESTING.
WORD MEANING IS COMPUTED
ADAPTIVE TESTING BUT RASCH
MODEL.
AND THE SPELLING IS
TWO-PARAMETER MODEL.
IT'S A CAT.
FOR FACES AND NAMES, THE
SCORING IS USED
MULTI-DIMENSIONAL BIFACTOR
MODEL.
YOU HEAR ABOUT TOOLBOX, WE USE
RESPONSE MODEL.
THIS IS MULTI-DIMENSIONAL TWO
FACTOR MODEL.
THIS SLIDE AND THE NEXT TWO
GIVES YOU THE TABLES ABOUT THE
SUMMARY FINDINGS OF THE THREE
STUDIES.
THE FIRST COLUMN IS THE TEST
AND CONSTRUCT, SHAPE COLOR IS
MEASURING EXECUTIVE FUNCTIONING
AND CORRELATION WITH AGE FROM
STUDY ONE AND STUDY TWO.
ALSO IN THE MIDDLE THEY GIVE
YOU CONVERGENT VALIDITY, YOU
COULD SEE THE GOLD STANDARD
THERE.
IN TOOLBOX THREE, KEFS, SHAPE
COLOR IS '09 IT'S PRETTY GOOD.
YOU LOOK AT THIS SLIDE FOR ZIP
COLORING AND ERROR MATCHING.
THE LAST COLUMN GIVES YOU
TEST-RETEST RELIABILITY, ALLOWS
YOU TO LOOK AT THE IMPACT OF
PRACTICING.
THERE ARE A LOT OF TOOLS TO
LOOK.
BUT YOU HAVE AN IDEA WHAT'S IN
THERE.
IF YOU HAVE QUESTIONS YOU COULD
ASK.
AND LATER I WILL SUMMARIZE THE
FINDINGS. DON'T WORRY IF YOU
DON'T GET EACH NUMBER.
THIS IS NUMBER SYMBOL MATCHING
AND WORD MEANING.
YOU COULD SEE WORD MEANING AND
CORRELATION WITH AGE IS 0.35.
THE OTHERS ARE NEGATIVE, RIGHT?
SPELLING, NEGATIVE.
AND THEN THE TEST/RETEST
RELIABILITY.
SO THIS IS -- OKAY, I'M GOING
THE WRONG DIRECTION.
SORRY.
OKAY.
HOW COME IT'S CHANGING THE
WRONG DIRECTION?
WE HAVE THE OPERATING SYSTEM.
SO WHAT IS THE IMPACT OF
OPERATING SYSTEM?
SO COMPARING TO IOS AND ANDROID
FOR ARRANGING PICTURES, THE
SCORE IS TWO POINTS HIGHER ON
iPHONE.
BUT RELIABILITY AND VALIDITY
THERE'S NO DIFFERENCE.
FOR ARROW MATCHING AND SHAPE
COLOR SORTING iPHONE HAS
SLIGHTLY HIGHER.
RELIABILITY NOT MUCH DIFFERENCE.
AND ALSO LET'S LOOK AT THE
PRACTICE IMPACT.
AND ARRANGING PICTURES, YOU
KIND OF SEE SLIGHTLY PRACTICE
IMPACT.
SO I THINK THE CORRELATION, I
DON'T WANT TO GO THROUGH TO THE
FRONT PAGE, IN CASE I GET LOST
AGAIN.
SO THE NUMBER, THE CORRELATION
I THINK IS 0.49.
SO THERE ARE IMPACT FOR THE
TIME.
BECAUSE THE DIFFERENCE BETWEEN
TIME IS TWO WEEKS.
SO IT'S 0.42.
IT'S KIND OF POOR.
AND THE NUMBER-SYMBOL MATCHING,
THE CORRELATION IS 0.83 WITH
AGE.
BUT SLIGHTLY POSITIVE DIRECTION.
AND ARROW MATCHING KIND OF
DIFFERENT.
CORRELATION WITH AGE.
ALL THE ASSESSMENTS CORRELATED
WITH AGE IN A NEGATIVE
DIRECTION BUT ALSO THE WORD
MEANING IS POSITIVE.
SO THE CONCLUSION THROUGH THE
STUDY, WE LOOK AT VALIDITY AND
CONSISTENCY TEST/RETEST
RELIABILITY.
ALL THOSE CONCLUSION IN THE
TABLES HELP YOU TO SEE THIS IS
A SAFE PRODUCT TO USE.
YOU ARE WELCOME TO USE THIS
MOBILE TOOLBOX.
THANK YOU.
AND THE REST IS THE SCREEN SHOT.
YOU MAY NOT NEED THEM.
THANK YOU, THAT'S ALL FOR MY
TALK.
>> OUR NEXT SPEAKER IS ALEX
CHENG FROM VANDERBILT, HIS TALK
IS LEVERAGING THE REDCap AND
MyCap MOBILE APP TO ADMINISTER
THE MOBILE TOOLBOX.
>> ALEX CHENG: THANKS FOR THAT
INTRODUCTION.
I THINK MANY OF YOU ARE
FAMILIAR WITH MyCap AND REDCap,
A LOT THIS WILL BE REDUNDANT
FOR MANY OF YOU.
I WILL TALK ABOUT REDCap AND
MyCap IN GENERAL AND
SPECIFICALLY HOW WE ARE USING
IT WITH MOBILE TOOL BOOX.
I WANT YOU TO THINK OF
POTENTIALLY OTHER MEASURES THAT
MIGHT WORK WELL ON THIS
PLATFORM, IN ADDITION TO
POTENTIALLY USING MOBILE
TOOLBOX ITSELF WITH THIS
PLATFORM, THAT MANY OF YOU ARE
ALREADY USING FOR CLINICAL
RESEARCH.
SO, MY MENTOR AND THE INVENTOR
OF REDCap PAUL HARRIS USUALLY
REFERS TO IT AS SWISS ARMY
KNIFE.
THERE'S MANY WAYS TO GET YOUR
DATA IN REDCap AND GET IT OUT
THAT IS COMPLIANT ACROSS THE
ENTERPRISE.
MANY OF YOU ARE FAMILIAR WITH
THE RESEARCHER WORKFLOWS
GETTING DATA INTO REDCap.
WHETHER CREATING A FORM THROUGH
THE POINT AND CLICK INTERFACE.
IF YOU HAVE A LOT OF DATA THAT
GOES INTO REDCap.
THERE'S A PROGRAM APPLICATION
INTERFACE IF YOU HAVE
APPLICATION THAT'S INTERACT
WITH THE DATA IN REDCap OR IF
YOU JUST NEED TO USE IT FOR A
DASHBOARD OR WEBSITE OR SOME
OTHER FORM YOU NEED TO BE ABLE
TO POPULATE EXTERNALLY TO THE
REDCap SYSTEM.
THE REDCap MOBILE APP WHICH
ALLOWS FOR MOBILE APP DATA
COLLECTION FROM THE RESEARCHER
SIDE.
AND ALSO A MODULE I HAVE WORKED
PRETTY EXTENSIVELY ON WHICH IS
THE EHR INTERVENTION, ALLOWS
YOU TO EXTRACT DATA FROM THE
ELECTRONIC HEALTH RECORD EHR
INTO REDCap.
I'M PRETTY SURE EVERYONE IN
THIS ROOM HAS FILLED OUT A
REDCap SURVEY.
THOSE ARE LINKS THAT COULD BE
EMAIL TODAY PARTICIPANTS.
ALSO SMS, TEXT MESSAGING AS A
WAY TO CONTACT AND DIRECT
PATIENTS AND PARTICIPANTS
TOWARDS REDCap AND DATA ENTRY
INSTRUMENTS. AND THEN WHAT THE
FOCUS OF THIS TALK WILL BE,
WHICH IS MyCap, A
PARTICIPANT-FACING MOBILE
APPLICATION.
AND REALLY NOT JUST FOR
COLLECTING DATA AND COLLECTING
MEASURES, SUCH AS THE MOBILE
TOOLBOX, BUT ALSO AS A PLATFORM
FOR ENGAGING PARTICIPANTS IN
RESEARCH.
AND SO, I THINK ONE OF THE
THINGS THAT MAKES REDCap
PARTICULARLY RELEVANT FOR NTB
IN PARTICULAR IS IT'S WIDELY
USED ACROSS MANY INSTITUTIONS
ACROSS THE ENTIRE WORLD.
SO AS YOU MAY KNOW, REDCap IS
AVAILABLE AT NO COST FOR ANY
ACADEMIC, NONPROFIT OR
GOVERNMENT ORGANIZATIONS.
AND REALLY THE SECRET OF --
WHAT HAS REALLY CAUSED A LOT OF
SUCCESS FOR REDCap IS THE
REDCap CONSORTIUM.
WHEN YOUR INSTITUTION GETS
REDCap THEY JOIN THE REDCap
CONSORTIUM.
WHAT THAT ALLOWS US TO DO,
BECAUSE THAT SOFTWARE IS BEING
USED AT YOUR INSTITUTION, WE
ARE ABLE TO GET FEEDBACK FOR
WHAT IS WORKING WELL, WHAT'S
NOT WORKING WELL.
WHAT ARE ADDITIONAL FEATURES
THAT ARE REQUIRED AND THAT
FEEDS BACK TO THE REDCap TEAM
THAT THEN DEVELOPS THOSE
MEASURES AND WE ARE ABLE TO
RELEASE THOSE BACK OUT TO
REDCap'S CONSORTIUM, THIS CYCLE
FOR US TO CONTINUOUSLY BE ABLE
TO IMPROVE IT AND INCREASE
DISSEMINATION OF THE SOFTWARE.
AS YOU CAN SEE IT'S USED PRETTY
MUCH IN EVERY COUNTRY.
IN 156 DIFFERENT COUNTRIES,
OVER 7,000 INSTITUTIONS OVER 2
MILLION USING IT.
THE REDCap MARKER PAPER HAS
37,000 CITATIONS.
ACTUALLY IT'S PROBABLY MORE
THAN THAT, IF YOU CONSIDER
PAPERS IN RESEARCH THAT HAVE
USED REDCap WITHOUT ACTUALLY
STUDYING THAT PAPER.
THE OTHER REASON WE BELIEVE THE
REDCap ECOSYSTEM IN GENERAL,
NOT JUST THE SOFTWARE ITSELF
BUT THE COMMUNITY AND ECOSYSTEM
OF THE PLATFORM IS RELEVANT FOR
NTB IS BECAUSE OF THE DIFFERENT
MODES WE HAVE FOR DISSEMINATING
STANDARDS AND MEASURES WITHIN
THE REDCap ECOSYSTEM.
WE HAVE THE REDCap SHARED
INSTRUMENT LIBRARY.
YOU CAN POST VALIDATED
INSTRUMENTS ONTO A PLACE WHERE
PEOPLE CAN DOWNLOAD IT DIRECTLY
INTO THEIR REDCap PROJECTS.
WE ALSO HAVE REDCap EXTERNAL
MODULES REPOSITORY, IF THERE'S
A CUSTOM CODE YOU WANT TO BE
ABLE TO AUGMENT REDCap PROJECTS
WITH, MOSTLY BASE REDCap IS
ABLE TO ACCOMMODATE 95% OF USE
CASES BUT IF THERE'S ANY CUSTOM
CODE YOU COULD SHARE THAT
THROUGH COLLABORATORS THROUGH
REDCap REPOSITORY.
ALSO A LOT OF THESE NIH-FUNDED
GROUPS ARE POSTING REDCap DATA
DICTIONARIES AND INSTRUMENTS ON
THEIR PLATFORMS AS WELL.
YOU ALL KNOW THE PROMISED NIH
CDE REPOSITORY.
SEE BIO PORTAL, IMPORT DIRECTLY
INTO REDCap.
RAD X ALSO.
ALL SYSTEMS IF YOU ARE NOT
FAMILIAR WITH, ARE DESIGNED TO
INCREASE STANDARDS ADOPTION
ACROSS RESEARCH IN THE U.S. AND
ARE AVAILABLE FOR ANY
RESEARCHERS WHO WANT TO USE
THEM.
[AND PHEN-X]
IT'S A TOOL FOR RESEARCHERS AND
IT'S A CUSTOMIZABLE MOBILE
APPLICATION READILY AVAILABLE.
IF YOU HAVE REDCap AT YOUR
INSTITUTION YOU HAVE THE
ABILITY TO INTEGRATE WITH IT ON
ANY PARTICIPANT'S PHONE.
IT CAPTURES DATA AND IT'S ABLE
TO IMPORT ALL THAT DATA
DIRECTLY TO A REDCap PROJECT.
IT ALSO FACILITATES CONTINUOUS
ENGAGEMENT AND PARTICIPANT
RETENTION.
SO HERE ARE SOME OF THE MAIN
FEATURES OF MyCap.
THERE'S THE VERY FAMILIAR OF
TASK OF CREATING FORMS AND HAVE
THEM RESPOND TO QUESTIONNAIRES.
IT'S A VERY EASY INTERFACE FOR
THE PEOPLE TO BE ABLE TO SEE
THE TASK THEY HAVE TO DO ON A
SPECIFIC DAY, IN ADDITION TO
ADDITIONAL TASKS THEY MAY HAVE
TO COMPLETE OVER THE COURSE OF
THE STUDY.
THERE'S THE ABILITY TO HAVE
MULTIPLE PARTICIPANTS ON A
SINGLE DEVICE APPLICATION.
SO YOU CAN IMAGINE IF THERE'S
MULTIPLE FAMILY MEMBERS USING A
DEVICE PARTICULARLY FOR LOWER
RESEARCH INDIVIDUALS, THEY CAN
EACH USE THE APPLICATION AND
HAVE THEIR PRIVACY BE PROTECTED
FROM WITHIN THE APPLICATION.
THERE'S NOTIFICATIONS. SO
INSTEAD OF TYPICAL REDCap
WORKFLOW, WHICH YOU MAY HAVE
USED WHICH EMAILED OUT SURVEYS,
YOU COULD ACTUALLY HAVE IT SET
AND AN APPLICANT, A
NOTIFICATION DIRECTED TO THEIR
PHONE.
THIS IS SORT OF TRYING TO MEET
PARTICIPANTS WHERE THEY ARE.
ESPECIALLY FOR A LOT OF THESE
DIFFERENT STUDIES WHERE PEOPLE
MAY NOT HAVE REGULAR ACCESS TO
THE INTERNET, BUT MANY PEOPLE
DO HAVE ACCESS TO A MOBILE
APPLICATION OR A MOBILE DEVICE.
THEY ARE ABLE TO BE CONTACTED
THROUGH THE APPLICATION.
YOU COULD SEE FROM THE SECOND
TO LAST FROM THE RIGHT, THERE'S
THE MESSAGING PLATFORM AS WELL.
WITHOUT EVEN COLLECTING A PHONE
NUMBER OR EMAIL ADDRESS FROM A
PARTICIPANT, IF THEY HAVE THE
MOBILE APPLICATION INSTALLED ON
THEIR PHONE, AND HAVE ENROLLED
IN THE STUDY YOU COULD CONTACT
THEM THROUGH THE MOBILE DEVICE
AS WELL.
AND THEN THE ACTIVE TASKS, ARE
A MAJOR PART OF IT.
SO COULD SEE HERE, THE ONE IN
THE MIDDLE HERE, THE FITNESS
TASK, THIS IS A BUILT-IN ACTIVE
TASK THAT iPHONE IOS RELEASE
BUT ALSO ADDED AS ACTIVE TASKS
TO THAT.
SO THIS IS HOW IT LOOKS.
YOU WILL ADD AN NTB ACTIVE TASK
THE SAME WAY YOU WOULD ADD AN
ACTIVE TASK OF A DIFFERENT TYPE
OR REDCap INSTRUMENT.
YOU JUST CLICK ADD AND IT WILL
CREATE THE ADDITIONAL TASK FOR
THE PARTICIPANT TO COMPLETE.
AND THEN THE DIFFERENT SETTINGS
THAT ARE AVAILABLE.
YOU CAN TITLE THE TASK.
YOU COULD ALLOW FOR
RETROSPECTIVE COMPLETION IF
THEY MISSED THE DATE THEY WERE
SUPPOSED TO COMPLETE IT.
BASE THE DATE WHICH YOU SENSE
THE FUTURE TASK BASED ON A
INSTALL OR BASELINE DATE YOU
SPECIFY.
YOU COULD COMPLETE IT ONE TIME,
IT COULD BE INFINITELY
REPEATING OR REPEAT ON A
CERTAIN FREQUENCY.
YOU COULD CHOOSE TO DELAY THE
START BY A CERTAIN NUMBER OF
DAYS AND THEN YOU COULD SPECIFY
WHEN, DURING, OVER THE COURSE
OF THE STUDY YOU WANT THAT TASK
TO BE REPEATED.
A LOT CUSTOMIZABILITY.
ADDITIONAL CUSTOMIZATIONS IN
TERMS OF STUDY LOGOS, CONTACT
INFORMATION, COLOR SCHEMES,
DIFFERENT WAYS YOU CUSTOMIZE TO
FIT YOUR STUDY AND BRANDING FOR
YOUR INSTITUTION.
THIS IS ONE OF THE WAYS THE
MOBILE TOOLBOX APP LOOKS LIKE
ON MyCap.
IN TERMS OF LESSONS LEARNED, WE
HAVE ESTABLISHED A NEW WAY TO
ITERATE TASKS THROUGH FLUTTER.
FOR THE TECHNICAL FOLKS THAT'S
A WAY TO UPDATE THE CODE BASES
FOR THE ANDROID AND IOS APP AT
THE SAME TIME.
ALLOW PEOPLE TO ONBOARD THROUGH
REDCap THROUGH A SURVEY AND
E-CONSENT.
THAT'S BECOME PARTICULARLY
RELEVANT FOR REMOTE AND
DECENTRALIZED TRIALS AS WE TRY
TO LIMIT THE CONTACT THROUGH
THE PANDEMIC, WE TRY TO LIMIT
THE CONTACT WE HAVE WITH
PARTICIPANTS MANY TIMES.
AND AUTOMATING THE END TASK
REMINDERS. SIMPLIFYING THE
MONITORING, THE REPORTING AND
ALSO MAKING DATA AVAILABLE
IMMEDIATELY TO THE STUDY TEAM.
YOU ARE ABLE TO USE ALL OF THE
TECHNOLOGIES BUILT INTO REDCap
ALREADY TO BE ABLE TO GET DATA
OUT OF THAT SYSTEM AS NEEDED.
SO COMING SOON IS THAT WE WILL
BE RELEASING THE EMPTY FEED TO
THE REDCap CONSORTIUM, THAT'S
EXPECTED IN MAY IF EVERYTHING
GOES WELL WITH THE PILOT
TESTING.
ENFORCING THE TASK BORDER IF
YOU HAVE A SEQUENCE OF TASKS
THAT NEED TO BE COMPLETED AND
THE SPANISH TRANSLATION.
I WANT TO AK NONL TEAMS AT
NORTHWESTERN, VANDERBILT AND
OTHERS, THIS IS PEOPLE WE
WORKED WITH CLOSELY, THEY HAVE
GONE THROUGH THE HARD WORK
MAKING THE TRANSITION TO THIS
PLATFORM SO YOU DON'T HAVE TO.
SO DEFINITELY HAPPY TO TALK
LATER.
[MGH STUDY TEAM AND UCSF STUDY
TEAM]
>> MODERATOR: THANKS, SO TWO
TERRIFIC TALKS ALREADY.
OUR NEXT SPEAKER IS DR. DORENE
RENTZ FROM HARVARD MEDICAL
SCHOOL.
THE TITLE IS THE MOBILE TOOLBOX
FOR REMOTE COGNITIVE ASSESSMENT
IN PRECLINICAL ALZHEIMER'S
DISEASE.
DORENE?
>> DORENE RENTZ: THANK YOU,
MOLLY.
GOOD AFTERNOON, EVERYBODY.
SO WE WERE ONE OF THE SITES
WHEN MOBILE TOOLBOX WAS
DEVELOPED TO PROVIDE A CLINICAL
APPLICATION FOR THE MOBILE
TOOLBOX.
THIS IS REALLY WORK THAT DR.
ROSE JUTTEN MY POSTDOC DID, I
GET TO PIGGYBACK ON HER
FABULOUS WORK AND MENTOR HER.
PRECLINICAL ALZHEIMER'S
DISEASE IS THAT CONDITION WHERE
INDIVIDUALS PERFORM NORMALLY ON
COGNITIVE AND FUNCTIONAL
MEASURES BUT STILL CONTAIN A
BURDEN OF AMYLOID AND THAOL
PATHOLOGY CONSISTENT WITH
ALZHEIMER'S DISEASE.
IT'S USING TOOLS TO DETECT
EARLY EVIDENCE FOR EARLY
TREATMENT INTERVENTION.
SO THE AIMS OF THIS STUDY WAS
TO COMPARE THE MTB COGNITIVE
DOMAIN SCORES TO THE INCLINIC
COGNITIVE ASSESSMENTS. YOU HAVE
SEEN SOME OF THAT.
AND EXPLORE ASSOCIATIONS OF MTB
AND AMYLOID AND TAU BIOMARKERS.
YOU SAW THIS BEFORE WE HAD 88
INDIVIDUALS.
WE ARE STILL ENROLLING.
BECAUSE OF THE SWITCH OVER TO
MyCap, OUR STUDY GOT DELAYED
FOR QUITE A NUMBER OF MONTHS
BUT WE ARE HOPING TO GET TO THE
100 INDIVIDUALS WE HAD
ORIGINALLY PLANNED ON.
YOU HEARD THEY ALL GOT THE
IN-CLINIC TESTING, THE PACC-5.
BUT A SUBSET OF THESE
INDIVIDUALS HAD AMYLOID BETA
>> Steve McCarroll: ET WITH 11C
PITTSBURGH COMPOUND B, AND 62
ALSO HAD TAU-PET, AND MK-6240
DR. KEITH JOHNSON ALLOWED US TO
USE IN HIS SAMPLE.
YOU HAVE SEEN THIS WORK BEFORE.
WHAT WE DID WAS CONFIRMATORY
ANALYSIS TO SEE IF WE COULD
UNCOVER THE MAIN FACTORS
ASSOCIATED WITH THESE EIGHT
TESTS.
WHAT WE FOUND WAS SOMETHING
SIMILAR TO WHAT THE NIH TOOLBOX
BOUND.
THERE WERE TWO FACTORS, ONE
RELATED TO FLUID COGNITION AND
ANOTHER TO CRYSTALLIZE
COGNITION.
WE DID LINEAR REGRESSION
ANALYSIS WITH MTB FLUID
COMPOSITE SCORES. AND LINEAR
REGRESSION TO LOOK AT MTB FLUID
COMPOSITE WITH AMYLOID AND TAU
UP TAKE ON PET.
ALL WERE CONTROLLED FOR AGE,
SEX, YEARS OF EDUCATION AND TAU
PET TRACER.
SO IN OUR CONFIRMATORY GROUP
ANALYSIS WE FOUND A TWO-FACTOR
MODEL OF FLUID AND CRYSTALLIZED
COMPONENTS. IT HAD AN ADEQUATE
FIT.
AS HYPOTHESIZED THE MTB FLUID
SCORES WERE NEGATIVELY
CORRELATED WITH AGE.
THAT'S NOT A BAD THING, THE
OLDER YOU GET, THE LOWER THE
SCORES. IT'S IN LINE WITH OTHER
STANDARDIZED COGNITIVE TIFTS
TESTS BUT IT WAS NOT ASSOCIATED
WITH EDUCATION.
THE LOWER MTB SCORES WERE
ASSOCIATED WITH LOWER PACC-5
PERFORMANCE.
THE FLUID SCORES WITH THE
CRYSTALLIZED SCORES. YOU SAW A
LITTLE OF THAT THIS MORNING.
THEN, WHAT ABOUT ITS
ASSOCIATION WITH AMYLOID AND
TAU DEPOSITION?
WHAT'S INTERESTING HERE IS THAT
THE STANDARDIZED REGRESSION
COEFFICIENT IS PREDICTING THE
MTB FLUID COGNITION SCORE
SHOWED NO ASSOCIATION WITH
GLOBAL AMYLOID.
THAT'S NOT UNUSUAL, IN THE
STUDIES WE HAVE DONE, IT'S VERY
DIFFICULT, PARTICULARLY WITH
THE NIH TOOLBOX OR MOBILE
TOOLBOX WE DON'T SEE THAT
CORELATION WITH AMYLOID.
BUT WHAT'S INTERESTING IS WE DO
SEE IT WITH TAU.
BOTH ENTORHINAL TAO.
IN YOUR STATISTICAL MODELS IF
YOU DO THIS KIND OF WORK, YOU
SEE ONCE AMYLOID AND TAU ARE
TOGETHER IN THE MODEL, AMYLOID
DROPS OUT AND TAU REMAINS
SIGNIFICANT.
THE MTB IS OPERATING IN A VERY
SIMILAR WAY ACROSS ALL THE
STUDIES DONE OF THIS TYPE
AROUND THE WORLD.
SO THAT IS REALLY POSITIVE.
AND HERE IS THE CORRELATION
MATRIX.
WHAT YOU SEE IS THAT AGAIN,
THOSE INDIVIDUALS, THIS IS A
GRAPH THAT IS REALLY SEPARATED
OUT WITH THOSE WHO HAD AMYLOID
POSITIVITY ON PET.
AND AMYLOID NEGATIVE AND WHAT
YOU COULD SEE HERE IS EXACTLY
WHAT I SAID.
IT'S THE PEOPLE WHO HAVE BOTH
AMYLOID AND TAU ON PET THAT
SHOW THE STEEPEST DECLINE.
SO AGAIN, IT'S THE COMBINATION
OF AMYLOID AND TAU BIOMARKERS
THAT ARE GOING TO BE CRITICAL.
SO WHAT DID WE LEARN?
I THINK WE SHOWED THE REMOTE
MTB MEASURES BOTH FLUID AND
CRYSTALLIZED COGNITIVE
FUNCTIONS ARE ASSOCIATED WITH
STANDARDIZED IN-CLINIC
COGNITIVE ASSESSMENTS IN THESE
IMPAIRED OLDER ADULTS.
THIS IS CRITICAL.
BECAUSE WHAT WE WANT TO DO IS
TO DETECT PEOPLE WHO ARE AT
RISK FOR COGNITIVE DECLINE.
PARTICULARLY THE OLDER
INDIVIDUALS.
THAT'S WHY I'M SO EXCITED ABOUT
MyCog IN THE PRIMARY CARE
SETTING.
BECAUSE WE NEED TO DETECT THESE
INDIVIDUALS EARLY.
AND MTB IS SHOWING PROMISE FOR
BEING ABLE TO DO THAT.
FURTHER, THESE FIRST
ASSOCIATIONS WITH AB
BIOMARKERS SUGGEST THESE MTB
FLUID MEASURES CAN DETECT
COGNITIVE DIFFERENCES RELATED
TO EARLY AD-TAU PATHOLOGY.
WE WERE TALKING EARLIER, I'M
REALLY INTERESTED TO SEE IF
THESE FLUID MEASURES MAY ALSO
BE ASSOCIATED WITH VASCULAR
CHANGES, AND MAYBE EARLY
VASCULAR CHANGES FOR EARLY
INTERVENTION.
AND FINALLY, THESE FINDS
SUGGEST THAT LEVERAGING THE
NUANCED COGNITIVE INFORMATION,
CAPTURED BY THESE VARIOUS
MEASURES INCLUDED IN THE MTB
MAY ADD TO THE DETECTION OF
SUBTLE COGNITIVE DEFICITS IN
PRE-CLINICAL AD.
WHAT WE DIDN'T EXPLORE YET IS
THINGS LIKE REACTION TIME OR
PROCESSING SPEED AND HOW
PUTTING TOGETHER, YOU SAW
VARIOUS COMPOSITE THAT'S ARE
ALSO ASSOCIATED.
YOU MAY NOT HAVE TO DO
EVERYTHING ON THE MOBILE
TOOLBOX BUT YOU COULD BE
SELECTIVE IN YOUR RESEARCH
STUDIES ABOUT WHICH MEASURES
YOU THINK WILL BE ASSOCIATED
WITH NEURAL NETWORKS IN YOUR
DISEASE POPULATION.
SO THANK YOU VERY MUCH.
OH WAIT -- FUTURE DIRECTIONS.
SORRY, I HAVE TWO MINUTES.
LONGITUDINAL DATA COLLECTION IS
ONGOING TO DETERMINE THE
OPTIMAL MTB BASE COMPOSITE FOR
DETECTING AD RELATED CHANGE
OVER TIME.
WE WILL SEE PEOPLE AT SIX
MONTHS AND ONE YEAR OUT TO SEE
IF WE COULD DO THAT.
AND WE REALLY ARE INTERESTED IN
FURTHER VALIDATION IN DIVERSE
POPULATIONS WITH A FOCUS ON
ACCEPTABILITY, FEASIBILITY AND
RELIABILITY IN INDIVIDUALS WITH
LOWER DIGITAL LITERACY.
AND BY PROVIDING MORE
EFFICIENT, AS WELL AS
ACCESSIBLE ASSESSMENT OF
COGNITION.
I THINK THE MTB MAY FACILITATE
THE MONITORING OF INDIVIDUALS
AT RISK OF AD AND RESEARCH AS
WELL AS OTHER REAL WORLD
SETTINGS SUCH AS HEALTHCARE
SETTINGS. THAT'S IT.
THANK YOU VERY MUCH.
>> MODERATOR: VERY PROMISING
DATA, DORENE.
EXCITING TO HEAR.
SORRY I MISSED IT AT THE
ALZHEIMER'S ASSOCIATION
INTERNATIONAL CONFERENCE.
SO GLAD TO HEAR IT HERE.
THE FINAL SPEAKER FOR THIS
SESSION IS RACHEL NOSHENY FROM
UNIVERSITY OF CALIFORNIA, SAN
FRANCISCO.
HER TITLE IS MOBILE TOOLBOX
REMOTE UNSUPERVISED
LONGITUDINAL ASSESSMENT OF
COHORT IN THE UCSF BRAIN HEALTH
REGISTRY.
RACHEL?
>> RACHEL NOSHENY: THANK YOU SO
MUCH, MOLLY.
AND THANKS FOR THE OPPORTUNITY
TO SPEAK TODAY.
THESE ARE MY DISCLOSURES
RELATED TO THIS WORK.
THE GREAT THING TO GIVE THIS
TALK IN THE AFTERNOON, YOU HEAR
ALL THE GREAT TALKS.
I CAN PROBABLY JUST DIVE RIGHT
IN AND GIVE VERY LITTLE OF THIS
BACKGROUND BUT JUST TO HIT A
FEW HIGHLIGHTS THERE ARE VERY
MANY HIGH IMPACT APPLICATIONS
OF THE DEVELOPMENT AND
VALIDATION AS EFFICIENT,
SCALABLE ASSESSABLE ASSESSMENT.
RECRUITMENT AND SCREENING FOR
CLINICAL TRIALS FOR
OBSERVATIONAL STUDIS TO
FACILITATE LONGITUDE GNAT.
AND SCREENING IN ALL SORTS OF
SETTINGS.
YOU CAN'T HEAR ME?
I CAN SPEAK LOUDER.
A LITTLE BIT BETTER?
CAN EVERYONE HEAR ME?
ALL RIGHT, GREAT.
THE GOALS OF THE STUDY I WILL
TALK TO YOU ABOUT WERE TO
ASSESS FEASIBILITY, COMPLIANCE,
USABILITY, LONGITUDINAL
RETENTION AND VALIDITY OF THE
MOBILE TOOLBOX IN A COMPLETELY
REMOTE, UNSUPERVISED ONLINE
SETTING IN ETHNO CULTURALLY
COHORT.
WE USED THE UCSF BRAIN REGISTRY.
VERY FEW OF THE PARTICIPANTS IN
THE BRAIN HEALTH REGISTRY HAVE
ANY SORT OF IN-CLINIC, MOST
THINGS ARE DONE COMPLETELY
REMOTELY.
INCLUDES DIGITAL UNSUPERVISED
COGNITIVE TESTS ACROSS DOMAIN
AND LONGITUDINAL COGNITIVE DATA
IS COLLECTED SOEFL REPORT
QUESTIONNAIRES.
A NUMBER OF RECENT INITIATIVES
ARE AIMED AT IMPROVING
DIVERSITY, SPECIFICALLY
INCREASING REPRESENTATION OF
BLACK AND LATINO INDIVIDUALS.
AND ONE KIND OF UNIQUE FEATURE
OF THE BRAIN HEALTH REGISTRY, A
MAJOR GOAL IS TO FACILITATE
OTHER STUDIES.
ONE WAY WE DO SO IS BY
REFERRING BHR INTO OTHER
STUDIES.
WE HAVE DONE 259,000 REFERRALS.
ONE PERSON COULD BE REFERRED
MORE THAN ONCE INTO ABOUT 32
STUDIES WITH ABOUT 26,000
PARTICIPANTS ENROLLED.
AS WELL AS THIS ROBUST SYSTEM
IN INFRASTRUCTURE FOR REFERRING
PEOPLE TO STUDIES TO CONDUCT
THE STUDY I WILL TALK TO YOU
ABOUT, WHICH IS THE BHR MOBILE
TOOLBOX STUDY IN TERMS OF
RECRUITMENT AND STUDY DESIGN
ELIGIBLE PARTICIPANTS WERE SENT
A SERIES OF AUTOMATED REFERRAL
EMAILS. TO BE ELIGIBLE THEY HAD
TO BE OPTED IN TO LEARNING
ABOUT FUTURE RESEARCH
OPPORTUNITIES, ENGLISH SPEAKING
AND COMPATIBLE PHONE.
THOSE WHO INDICATED STUDY
INTEREST WERE PROVIDED
INSTRUCTIONS WITHIN THE BHR
ONLINE PORTAL.
A SUBSET OF THOSE WHO COMPLETED
THE BASELINE ASSESSMENT WITHIN
THREE DAYS WERE INVITED TO
CONTINUE INTO THE LONGITUDINAL
STUDY WHICH CONSISTED OF A
SINGLE LONGITUDINAL STUDY.
THE ORDER OF THE TESTING
RANDOMIZED WITH HALF THE PEOPLE
TAKING IT FORWARD, HALF IN
REVERSE.
AFTER THEY COMPLETED IN SIX
MONTH INTERVALS AND GIVEN $25
FOR TIME POINT FOR COMPLETION.
IN TERMS OF ENROLLMENT AND
DEMOGRAPHICS.
WE INVITED 48,000 PEOPLE.
OUT OF THOSE ABOUT 17% OR ABOUT
8200 RESPONDED.
AND ABOUT 15% OR A LITTLE OVER
7100 ENROLLED.
THIS WAS OVER ABOUT A
FOUR-MONTH PERIOD.
OUT OF THOSE ABOUT 3500
COMPLETED THE ASSESSMENTS AT
BASELINE.
OUT OF ALL THOSE ENROLLED, MOST
OF THEM A LITTLE OVER 6700 WENT
INTO THE BASELINE-ONLY COHORT
AND 1327 WERE SELECTED TO
ENROLL IN THE LONGITUDINAL
COHORT.
BASELINE GROUP, ABOUT 64 YEARS
OLD.
77% FEMALE, 16.5 YEARS OF
EDUCATION.
THERE'S STRATIFICATION BY ETHNO
CULTURAL GROUP WHICH I WILL
TALK ABOUT MORE IN A MINUTE.
THE LONGITUDINAL COHORT WAS
SIMILAR.
SLIGHTLY MORE REPRESENTATION OF
FEMALES AND MORE ETHNO CULTURAL
DIVERSITY.
WE LOOKED AT DIFFERENCES
BETWEEN THOSE INVITED AND
ENROLLED.
COMPARED TO THOSE INVITED AT
THE TOP OF THE FUNNEL THOSE
PARTICIPANTS WERE OLDER, HIGHER
EDUCATION LEVELS, MORE WERE
FEMALE AND IDENTIFIED AS NON
LATIN-X, WHITE.
THIS IS SOMETHING WE SEE IN
OTHER REFERRAL STUDIES BUT AN
IMPORTANT THING TO CONSIDER AS
FAR AS SELECTION BIASES WHEN
CONDUCTING THIS TYPE OF STUDY.
FOR THE LONGITUDINAL STUDY, I
WILL FOCUS ON THAT FOR THE NEXT
COUPLE MINUTES, WE AIMED FOR A
DIVERSE COHORT.
AND SPECIFICALLY WE AIMED FOR
DISTRIBUTION, EVEN DISTRIBUTION
ACROSS 7 10-YEAR AGE BANDS,
WHICH YOU COULD SEE ON THE LEFT.
THERE'S A SLIDE MISSING THERE.
THAT'S OKAY.
WE AIM FOR ETHNOCULTURAL
DIVERSITY.
SO AT LEAST 5% WHO IDENTIFY AS
BLACK, AT LEAST 15% LATINO.
LESS THAN 70% NON LATINO WHITE.
FOR EDUCATION IN EACH OF THOSE
AGE BANDS WE AIM FOR 60% WITH
LESS THAN 16 YEARS EDUCATION.
AND RECRUITMENT WAS COMPLETED
IN SMALL WAVES TO MAXIMIZE
DIVERSITY.
WHAT I MEAN IS WE STARTED BY
INVITING A FEW PEOPLE TO SEE
HOW THESE CELLS WERE FILLING.
AND THEN DEPENDING ON HOW WELL
WE FILLED CERTAIN CELLS WE
FOCUSED ON DIFFERENT GROUPS OF
INTEREST.
SO HOW DID WE DO IN TERMS OF
ACTUAL ENROLLMENT?
EACH CELL SHOWS THE NUMBER OF
PARTICIPANTS ENROLLED OVER THE
TARGET.
SO ALL THE GREEN CELLS ARE
WHERE ENROLLMENT EXCEEDED THE
TARGET BY OVER 10%.
UBER ENROLLMENT.
OVER REPRESENTATION.
YELLOW WE WERE CLOSE TO HITTING
THE TARGET.
AND PINK WAS WHERE THE
ENROLLMENT WAS LOWER THAN THE
TARGET BY OVER 10%.
I JUST WANT TO HIGHLIGHT SOME
THINGS IN TERMS OF ACTUAL
ENROLLMENT.
FIRST, IN TERMS OF THE TOTAL
NUMBER OF PEOPLE ENROLLED, WE
ENROLLED MORE THAN ANTICIPATED.
WE DIDN'T MEET THE ENROLLMENT
TARGETS FOR THOSE WHO IDENTIFY
AS BLACK AND LATIN-X.
SO AGAIN, THE GOAL WAS OVER 5%
BLACK AND OVER 15% LATIN-X.
WE DID THE BEST IN THE MIDDLE
AGE BANDS BETWEEN 40 AND 80
YEARS OLD.
AND WE HAD THE LEAST SUCCESS
ENROLLING THOSE WHO IDENTIFIED
AS BLACK OR AFRICAN AMERICAN,
ESPECIALLY THOSE WITH LOWER
EDUCATION LEVELS.
SO AGAIN, I THINK THIS IS
IMPORTANT YOU UNDERSTAND THIS
AS SELECTION BIAS IN THIS SORT
OF STUDY.
WE ALSO LOOKED AT COMPLETION
RATES.
LONGITUDINAL COMPLETION RATES
OF THE MOBILE TOOLBOX
ASSESSMENTS. AT BASELINE AND
DIFFERENT TIME POINTS, YOU
COULD SEE THOSE ALONG THE
HORIZONTAL ACCESS, LONGITUDINAL
TIME POINT.
MONTH, SIX, 12 OR 18.
AND YOU COULD SEE OVERALL THE
COMPLETION RATE, THE BLACK
BARS, THAT'S THE TOTAL COHORT
RANGE FROM 52% TO 59%.
THE NICE THING IS IF YOU LOOK
OVER TIME, THOUGH YOU HAVE KIND
OF A SIGNIFICANT DROP-OFF AS
FIRST, THE FIRST ASSESSMENT,
YOU KIND OF DON'T SEE THAT
ATTRITION OVER TIME.
COMPLETION RATES IMPORTANTLY
DID VARY BY ETHNOCULTURAL GROUP
WITH BOTH AT BASELINE AND
LONGITUDINALLY, LOWER
COMPLETION RATES FOR THOSE
IDENTIFYING AS BLACK, LATIN-X,
AND ANOTHER ETHNOCULTURAL GROUP
AS WELL.
AND SO AGAIN, GOING BACK TO
THOSE SAME ISSUE OF SELECTION
BIASES, NOT JUST IN THE INITIAL
ENROLLMENT BUT COMPLIANCE AND
RETENTION OVER TIME IS SIMILAR.
FINALLY, TO ADDRESS USABILITY
IN THIS COMPLETELY REMOTE
SETTING, WE WANTED TO QUANTITY
THE AMOUNT OF PARTICIPANT
SUPPORT REQUESTED.
SO OUT OF THE OVER 7100
PARTICIPANTS WHO WERE ENROLLED,
BOTH THE BASELINE AND
LONGITUDINAL COHORT, 1205
INDIVIDUAL ZENDESK TICKETS WERE
REPORTED.
WE BREAK DOWN BY THE TYPE OF
SUPPORT REQUESTS, 78% WERE
MOBILE TOOLBOX, PROCEDURAL
ASPECT.
16 PIRS PERCENT GENERAL BRAIN
HEALTH REGISTRY INQUIRIES, 5%
TECHNICAL ASSISTANCE REQUESTS
AND 1% FOR SUGGESTIONS OR
FEEDBACK.
SO JUST TO SUMMARIZE, EFFICIENT
ENROLLMENT AND TASK COMPLETION
OF A LARGE COHORT IN THE MOBILE
TOOLBOX STUDY IS FEASIBLE IN A
COMPLETELY REMOTE SETTING.
WE ENROLLED MANY IN A
FIVE-MONTH PERIOD WITH
COMPLETION RATES GREATER THAN
50%.
ACHIEVING ROBUST ETHNO CULTURAL
AND EDUCATIONAL DIVERSITY
ESPECIALLY LONGITUDINAL
FOLLOW-UP.
MOST WERE ABLE TO COMPLETE MTB
WITHOUT INDIVIDUAL SUPPORT.
WE DID GET A LOT OF REQUESTS
FOR SUPPORT WHICH IS IMPORTANT
TO CONSIDER FOR DEPLOYING IN A
COMPLETELY REMOTE SETTING.
AND IT COULD BE SCALED UP TO
EFFICIENTLY ASSESS COGNITION IN
MANY SETTINGS.
NOW WE WANT TO DIG INTO THE
DATA AND CATEGORIZE
PERFORMANCE, VALIDITY,
RESPONSIVENESS TO CHANGE OVER
TIME.
THE NEXT PHASE OF THE STUDY,
VERY EXCITEDLY, WE WILL BE
DEVELOPING AND EVALUATING
NOVEL, CULTURALLY INFORMED
INCLUSION AND ENGAGEMENT
STRATEGIES.
EVALUATE COMPLIANCE AND
RETENTION OVER LONGER TIME
PERIODS.
IDENTIFY PARTICIPANT
CHARACTERISTICS, DEMOGRAPHICS
COGNITIVE ASSOCIATED WITH
COMPLIANCE AND RETENTION AND
INVESTIGATE RELATIONSHIP
BETWEEN MTB MEASURE PERFORMANCE
AND ADDITIONAL BRAIN HEALTH
REGISTRY ASSESSMENTS. THANK YOU.
>> MODERATOR: I WAS SO
ENGROSSED IN YOUR TALK, RACHEL,
I SCARED MYSELF WHEN THE TIMER
WENT OFF.
BUT EVERYONE WAS RIGHT ON TIME,
SO THAT WAS TERRIFIC.
SO WE HAVE ABOUT 15 MINUTES, AS
SCHEDULED.
SO PERFECT TIMING FOR QUESTIONS
FROM THE AUDIENCE.
WOULD ANYONE, AND AGAIN,
PLEASE, IF YOU HAVE QUESTIONS I
WOULD APPRECIATE IT IF YOU
COULD COME DOWN AND USE THE
MICROPHONE SIMPLY SO THOSE WHO
ARE LISTENING IN VIRTUALLY CAN
HEAR THE QUESTION AND ALSO THAT
IT WOULD BE AUDIBLE FOR
VIDEOCAST.
ANY QUESTIONS TO START?
OKAY, WELL THEN, FINE.
I HAVE ONE.
AND ACTUALLY, YOU NO I, THIS IS
SORT OF THE RECENCY EFFECT.
RACHEL, I WANTED TO ASK YOU,
IT'S NOT SO MUCH THE MOBILE
TOOLBOX, ITSELF, BUT THE ISSUE
OF BEING ABLE TO RECRUIT AND
RETAIN A DIVERSE ENROLLMENT FOR
THE STUDY.
AND I BELIEVE YOU ALSO, SO IF
YOU HAVE ANYTHING TO SHARE
THERE, ANY SORT OF LESSONS
LEARNED FROM THAT EXPERIENCE,
AS TO WHAT, YOU KNOW, MIGHT BE
THINGS TO TRY OR THAT WOULD BE
BETTER FOR THE FUTURE, I
BELIEVE YOU WERE REMARKING
SOMETHING ABOUT UPTAKE OR
PEOPLE'S MAYBE LACK OF WANTING
TO CONTINUE LONGITUDINALLY,
THAT THERE WERE MAYBE SOME
BARRIERS, I DON'T KNOW WHETHER
THEY WERE PSYCHOLOGICAL
BARRIERS OR OTHER BARRIERS TO
MAYBE CONTINUING TO BE IN A
STUDY LONGITUDINALLY USING THE
MOBILE TOOLBOX?
>> RACHEL: I THINK THIS IS VERY
IMPORTANT AND NOT UNIQUE TO
THIS STUDY.
WHAT WE SEE IS EVERY STEP IN A
RECRUITMENT AND RETENTION, WE
SEE SELECTION BIAS AMPLIFIED.
TO BE USED HERE, THIS IS OUR
[INAUDIBLE]
BOTH WITH THE INCLUSION AND
ENGAGEMENT.
WE HAVE A NUMBER OF OTHER
INITIATIVES THAT ARE REALLY
LOOKING AT AGAIN
CULTURALLY-INFORMED BUT ALSO
INTENSIVE AND A MULTI-MODAL
ENGAGEMENT STRATEGY FOR DOING
BETTER.
SO IN GENERAL THE BRAIN HEALTH
REGISTRY IS HANDS-OFF.
AUTOMATED EMAILS, INVITATIONS.
TO COMPLETE TASKS.
[OFF MIC]
WE ARE LOOKING HOW WE COULD
GIVE BACK [ INDISCERNIBLE ]
MORE AND HOW WE COULD IMPROVE
THE USER EXPERIENCE.
>> MODERATOR: I HAPPEN TO KNOW
FOR THE BRAIN REGISTRY, THE
GROUP INITIATED A PRETTY
INTENSIVE OUTREACH TO THE
HISPANIC COMMUNITY, THE LATIN-X
COMMUNITY REALLY MULTI-PRONGED
AND DETAILED.
DO YOU FEEL THAT WAS WORTH THE
INVESTMENT?
THAT WAS A LOT OF TIME AND
EFFORT, I THINK, THAT WENT INTO
THAT FOR THE RETURN.
>> RACHEL: YEAH, I THINK SO.
[OFF MIC]
WE WERE ABLE TO ENROLL ABOUT
5,000 ADULTS THROUGH THAT STUDY.
AND WHEN WE FIRST LEARNED AGAIN
[ INDISCERNIBLE ]
[OFF MIC]
>> MODERATOR: DORENE?
>> DORENE: YEAH, I TOTALLY
AGREE WITH RACHEL THAT IT'S
DIFFICULT.
BUT ONE OF THE THINGS THAT
WE'RE DOING, AND YOU MAY WANT
TO THINK ABOUT THIS IN YOUR
STUDIES AS WELL, WE ARE
LITERALLY GOING TO SENIOR
HOUSING ENVIRONMENTS IN BOSTON.
AND WE ARE PRESENTING SOME OUR
RESEARCH, MOBILE TOOLBOX IS ONE
OF THEM.
AND WHEN YOU APPEAR IN PERSON,
EVEN THOUGH THE ASSESSMENT IS
REMOTE, THEY THEN BEGIN TO
TRUST YOU, THEY WANT SOMETHING
TO DO, THEY SIGN UP.
WE STAY IN TOUCH.
SO IT'S ONE OF THE THINGS.
BECAUSE WE TAKE RECRUITING
DIVERSE POPULATIONS VERY
SERIOUSLY IN BOSTON.
AND IT'S SOMETHING TO KEEP IN
MIND.
>> MODERATOR: DR. [
INDISCERNIBLE ]
>> THANK YOU, GREAT TALK.
ALEX YOU MIGHT HAVE MENTIONED
THIS BUT I COULD BE WRONG.
YOU MENTIONED THERE'S A BIAS OR
DIFFERENCE IN SCHOOLS BETWEEN
IOS SYSTEM AND ANDROID SYSTEM.
IS THERE SOMETHING -- OH,
SORRY.
SO IS THIS SOMETHING THAT IS
KNOWN TO BE A SIGNIFICANT
FACTOR?
AND IS THERE SOMETHING WE NEED
TO DO TO ADDRESS THAT?
>> ALEX: THAT'S A GOOD QUESTION.
YEAH, FOR SOME OF THE SCORES
iPHONE IS A LITTLE HIGHER.
BUT I THINK IT MIGHT BE SOME
EDUCATION OR SOME RELATED, WE
WERE LOOKING INTO THAT.
BUT YOU COULD SEE THROUGH THE
OTHER RELIABILITY OR THE OTHER
THINGS WE ARE FINDING NO IMPACT.
>> JUST REMIND ME EXACTLY WHERE
THE IMPACT WAS?
>> PARDON ME?
>> WHERE WAS THE IMPACT?
THE RELIABILITY WAS OKAY?
>> ALEX: RELIABILITY AND
INTERNAL CONSISTENCY, THOSE
KIND OF NUMBERS WE FIND THEY
ARE STABLE ACROSS THE SYSTEM.
BUT ONLY THE SCORES FOR iPHONE
IS, FOR ONE OF THEM, IS TWO
POINTS HIGHER.
BUT I THINK IT'S, YOU KNOW,
EDUCATION OR SOMETHING.
THE PERSON USING PHONE SYSTEM,
HAS AN IMPACT.
>> THANK YOU.
>> MODERATOR: EXCUSE ME, IF YOU
DON'T MIND, IF YOU COULD COME
TO THE MICROPHONE SO WE CAN ALL
HEAR YOUR QUESTION.
THANK YOU.
>> AUDIENC MEMBER: I WANT TO
SEE IF YOU HAVE AN OPPORTUNITY
TO COMPARE CURRENT CLINICAL
USE, DIAGNOSTIC [ INDISCERNIBLE
] AND THE OTHER BIOMARKERS LIKE
TAU 217, IF YOU HAVE ANY
INFORMATION ABOUT IT?
>> MODERATOR: DORENE.
IT'S A GREAT QUESTION, DO YOU
MIND REPEATING IT, SOMEONE WAS
EXITING AS YOU WERE ASKING.
IF YOU COULD REPEAT PARTIALLY.
>> IN PART I THINK YOU ARE
ASKING HOW GOOD IS IT
CLINICALLY FOR DIFFERENTIAL
DIAGNOSIS.
WE LOOKED AT BIOMARKERS.
>> YES, CLINICAL USE TOOLS.
MMIC?
(?) AND HOW YOU MOBILE TOOLS
COMPARED TO THAT.
DO YOU HAVE ANY DATA, SOME DATA
CORRELATION TO HAVE THAT?
>> YEAH, WHAT A GREAT QUESTION.
ACTUALLY RIGHT NOW, IT'S NOT
BEING USED CLINICALLY.
IT'S A RESEARCH PARADIGM.
I'M HOPING THAT IT WILL MOVE
THAT WAY IN THE FUTURE.
THERE IS WORK THAT LISA
THOMPSON HAS BEEN DOING IN THE
PRIMARY CARE SETTING.
NOT WITH MOBILE TOOLBOX BUT
WITH OTHER DIGITAL TOOLS AND
COMPARING IT TO THE MOCA, ALSO
BEING USED CLINICALLY.
THAT HASN'T BEEN WITH MOBILE
TOOLBOX YET.
HOPEFULLY WE WILL GET THERE.
I DON'T HAVE ACCESS TO
BLOOD-BASED BIOMARKERS YET.
WE ARE STILL WORKING ON IT.
SO I CAN'T SAY ANYTHING ABOUT
PT 217, BUT EVENTUALLY WHAT I'M
HOPING IN THE NEXT COUPLE YEARS
THAT WE COULD COMPARE,
PARTICULARLY FOR PEOPLE WHO ARE
AT RISK, IF THEY HAVE
BLOOD-BASED BIOMARKERS AND
LOOKING AT MOBILE TOOLBOX
MEASURES, WHAT'S THE
SENSITIVITY OF THAT TO
BLOOD-BASED BIOMARKERS. WE KNOW
NOW FROM THE RESEARCH, THE
BLOOD BASED BIOMARKERS HAVE A
GOOD-TO AMYLOID AND TAU-PET.
WE ARE AT THE PRECIPICE OF
KNOWING THE ANSWER TO YOUR
QUESTION.
BUT NOT RIGHT THERE YET.
>> AUDIENCE MEMBER: THANK YOU.
>> WE NEED MORE FUNDING, NIH.
[ CHUCKLES ]
>> THANK YOU, I HAVE ONE QUICK
FOLLOW-UP QUESTION TO THE
PANELISTS. HAVE YOU EVER
NOTICED THERE'S SO MANY FUNDED
PROJECTS FOR THE AI-BASED
DIAGNOSIS TOOL.
IT'S ONLY ONE YOU FIND OUT IS
VALUABLE, IN THE FUTURE WANT TO
INCLUDE IT IN THIS TOOLBOX.
>> ALEX CHENG: ACTUALLY FOR
MyCog, DR. WOLFE WAS TALKING
ABOUT MyCog THIS MORNING.
WE DID APPLY MACHINE LEARNING
AND AI TO PREDICT DEMENTIA.
>> DORENE: THERE WAS A NEW
STUDY, IT'S COMING OUT, IT WAS
ACCEPTED FOR PUBLICATION BY
LILY YU.
AND HIROKO DASH, WHERE THEY USE
MACHINE LEARNING IN THE HARMADA?
(?) STUDIES, EMOTIONAL,
COGNITION, MOTOR, SENSORY.
USING THE AI ALGORITHM TO
PREDICT AMYLOID DEPOSITION IN
ARMADA.
AND THEY FOUND TEN SALIENT
TESTS THAT WERE RELATED.
AND NOT ONLY JUST THE MEMORY
TEST AND COGNITION, BUT EVEN
OLFACTION AND GAIT.
I THINK IT WILL BE THE
COMBINATION OF VARIOUS TESTS IN
BOTH MOBILE TOOLBOX OR NIH
TOOLBOX THAT WILL GIVE YOU THE
GREATER SENSITIVITY AND
HOPEFULLY BE USED CLINICALLY AS
WELL.
>> AUDIENCE MEMBER: THANK YOU.
THANK YOU TO ALL.
>> MODERATOR: OTHER QUESTIONS
FROM THE AUDIENCE?
SO I'M JUST GOING TO GO AHEAD
-- OH, YES, PLEASE, COME DOWN.
>> AUDIENCE MEMBER: HI, GREAT
TALKS EVERYONE.
I HAD A QUESTION FOR YOU ABOUT
THE MOBILE TOOLBOX, OR ACTUALLY
THE REDCap ASPECT.
WE HAVE HAD A SURPRISING
EXPERIENCE HAVING SEVERAL
PARTICIPANTS WHO DO NOT HAVE A
SMARTPHONE.
ARE THERE OPTIONS FOR STILL
ENGAGING THOSE PARTICIPANTS IF
THEY DON'T HAVE A SMARTPHONE?
OR BALKING AT INSTALLING AN APP?
>> YEAH, LIKE MyCog, IT'S MEANT
TO BE DELIVERED IN A SETTING.
RIGHT NOW THE MyCap APP DOESN'T
HAVE A RESEARCHER MODE YOU
COULD HAVE IT ON ONE APP AND
HAVE MULTIPLE PARTICIPANTS IN
ONE APP.
THAT IS SOMETHING WE WILL TAKE
BACK AND POTENTIALLY WORK INTO
THE WORKFLOW SO YOU COULD HAVE
THE MAIN, WHICH IS
PARTICIPANT-FACING AND ALSO
HAVE A CLINIC MODE FOR IT, SO
PEOPLE WHO DON'T HAVE ACCESS TO
MOBILE APPLICATION WILL BE ABLE
TO DO THAT IN CLINIC WITH A
RESEARCHER THERE.
>> AUDIENCE MEMBER: WOULD THERE
ALSO BE CHANCE FOR WEBSITE OR
WEB INTERFACE THAT WOULD BE
LIKE AN EQUIVALENT TO THE APP?
I DON'T KNOW IF THEY COULD DO
SOMETHING LIKE THAT?
>> THAT'S A GOOD QUESTION.
I THINK THERE MIGHT BE
VALIDATION REQUIRED FOR
DIFFERENT INTERFACE.
BUT THAT'S SOMETHING ELSE TO
TAKE INTO CONSIDERATION, FOR
SURE.
I KNOW SOME OF THE OTHER
VENDORS WHO PROVIDE THAT KIND
OF THING DO HAVE A DESKTOP
VERSION OR A WEB VERSION OF
THAT AS WELL.
>> AUDIENCE MEMBER: THANK YOU.
>> MODERATOR: ALL RIGHT, I
THINK WE WILL WRAP UP THIS
SESSION.
IF THE SPEAKERS COULD STAY
THERE JUST A MOMENT.
I WANT TO MAKE A COUPLE OF
ANNOUNCEMENTS.
WE ARE GOING TO BE ON A BREAK
UNTIL 2:15, SO ABOUT A
15-MINUTE BREAK AND THE SECOND
SET OF CONCURRENT SESSIONS WILL
BEGIN AT 2:15.
THESE WILL BE IN THE SESSIONS
4, 5 AND 6 AND THEY WILL BE IN
THE SAME ROOMS, BALCONIES A,
WHICH WE ARE IN.
B AND THEN BACK IN THE MAIN
AUDITORIUM, ONE OF THOSE THREE
PLACES.
THE USE OF THE NIH TOOLBOX IN
DIVERSE POPULATIONS WILL BE
HERE, BALCONY A.
CLINICAL POPULATIONS WILL BE
BALCONY B NEXT DOOR.
AND NIH TOOLBOX ACROSS THE LIFE
SPAN IN CLINICAL POPULATIONS
WILL BE IN THE MAIN AUDITORIUM.
THE ONLY OTHER THING I WOULD
LIKE TO POINT OUT TO YOU IS
AGAIN THIS EMAIL ADDRESS THAT
YOU COULD SEE ON THE SCREEN.
NIHMEASURESCONF@MAIL.NIH.GOV
FOR THOSE HERE PRESENT AND
THOSE LISTENING AND WATCHING
VIRTUALLY, PLEASE SEND ANY
ADDITIONAL QUESTIONS OR
COMMENTS TO THAT EMAIL ADDRESS
AND WE WILL BE BACK TO YOU
AFTER THE CONFERENCE IS OVER,
HOPEFULLY WITHIN A MATTER OF
DAYS TO A COUPLE OF WEEKS.
THANK YOU FOR EVERYONE'S
ATTENDANCE AT THE SESSION.
I THOUGHT IT WAS GREAT. AND WE WILL SEE YOU AGAIN IN
ABOUT 15 MINUTES WITH ANOTHER SESSION.
AMY, I WANT YOU TO BE ABLE TO
SHOW YOUR SLIDES, BUT I MIGHT
GO AHEAD AND INTRODUCE YOU AND
ASK YOU TO COME UP AND
HOPEFULLY BY THAT TIME THEY
WILL HAVE THINGS IN WORKING
ORDER.
>> MODERATOR: THIS IS SESSION
ON USE OF THE NIH TOOLBOX IN
DIVERSE POPULATIONS SO IF THIS
IS NOT THE SESSION YOU INTENDED
TO BE IN, YOU MIGHT WANT TO
MOVE TO ANOTHER ROOM.
BUT I HOPE YOU ALL STAY, I
THINK IT WILL BE QUITE
INTERESTING.
THE SPEAKERS HAVE TEN MINUTES
EACH AND AT THE END OF THE
TALKS WE WON'T BE TAKING
QUESTIONS THEN BUT AT THE END
OF THE FOUR TALKS THE SPEAKERS
WILL ASSEMBLE HERE AT THE TABLE
ON THE STAGE AND TAKE SOME
QUESTIONS AND ANSWERS.
HAVING A PROBLEM ADVANCING THE
SLIDES.
I DIDN'T TRY THE MOUSE.
THIS HAD BEEN WORKING.
WE WILL WORK WITH THE MOUSE.
ALL RIGHT.
WE WILL MOVE AHEAD.
THE FIRST SPEAKER OF THIS
SESSION IS AMY THOMAS FROM
WASHINGTON STATE UNIVERSITY.
THE TITLE OF HER TALK IS
WORKING WITH FIELD CENTERS TO
IMPLEMENT THE NIH TOOLBOX AND
AMERICAN INDIAN COMMUNITIES,
THE STRONG HEART STUDY.
COME ON UP AMY, SO YOU WILL BE
USING THE MOUSE.
>> AMY THOMAS: THANK YOU SO
MUCH FOR SETTING THAT UP.
ALL RIGHT, HELLO AND WELCOME.
MY NAME, AGAIN IS AMY B. THOMAS.
I'M CO-PRESENTING THIS
PRESENTATION WITH MY COLLEAGUE
KYRA OZIEL WHO IS RIGHT THERE.
THIS PRESENTATION IS BASED OFF
DATA FROM THIS RF1 GRANT WITH
THE MPI TEAM HERE.
OUR STUDY IS VERY LARGE ACROSS
MULTIPLE STATES AT MULTIPLE
SITES.
WE ALSO HAVE OUR SITE PI'S, DR.
ALI IN THE OKLAHOMA SITE, MS.
WEST AT ARIZONA, MS. O' LEARY
IN THE DAKOTAS AS WELL AS OUR
GREAT SITE STAFF IN THE
DAKOTAS, ARIZONA AND OKLAHOMA.
THE STRONG HEART STUDY IS THE
LARGEST POPULATION COHORT STUDY
OF AMERICAN INDIAN RESULTS.
IT'S A LONG-RUNNING PROSPECTIVE
STUDY WHICH WAS STARTED IN 1989
OON GOING TO THIS DAY.
THERE ARE 12 TRIBES AND
COMMUNITIES.
WE ARE PART OF THE ANCILLARY
STUDY, THE RF1 IS, PART OF THE
STRONG HEART AND COLLECTING
PHASE 7 DATA RIGHT NOW.
WE WANT TO RECOGNIZE TRIBES ARE
SOVEREIGN ENTITIES WE HAVE 11
REVIEW BODIES.
WE SOUGHT AND GOT APPROVAL TO
GIVE THIS PRESENTATION TODAY.
SO THIS IS BASED OFF 34 YEARS
OF RELATIONSHIP BUILDING WITH
THESE TRIBES AND COMMUNITIES.
THIS IS THE RF1 OUR DATA COMES
FROM AND OUR SPECIFIC AIMSMENT
THEY ADDRESS ASSOCIATIONS THAT
MIGHT INFLUENCE COGNITIVE
PERFORMANCE.
BUT THE OVERALL OBJECTIVE IS TO
EVALUATE THE TOOLBOX AND
ESTABLISH NORMATIVE STANDARDS
IN AMERICAN INDIAN ADULTS.
AMERICAN INDIAN POPULATIONS
HAVE A GREATER BURDEN OF
ALZHEIMER'S-DISEASE RELATED
DEMENTIA CO MORBIDITIES
COMPARED TO NON HISPANIC WHITE
POPULATIONS. WE RECOGNIZE THE
TUMULTUOUS HISTORY THAT'S BEEN
FORCED UPON AMERICAN INDIAN
PEOPLES.
THEIR HISTORY CANNOT AND SHOULD
NOT BE EXPLAIND IN TWO SHORT
BULLET POINTS.
WE PROVIDE THESE REALLY
SUMMARIZED BUT BRIEF EXAMPLES
TO GIVE SOME CONTEXT ON THE
BACKGROUND OF EDUCATION QUALITY
AND HOW THESE IMPORTANT CO
FACTORS CAN AND DO STILL
INFLUENCE PEOPLE'S LIVES TO
THIS VERY DAY.
ESPECIALLY HOW OUR PARTICIPANT
WOULD INTERFACE WITH A
COGNITIVE TEST BATTERY.
BOARDING SCHOOLS, THEY REMAINED
OPEN UNTIL 1976.
WITHIN THESE SCHOOLS CULTURAL
ASSIMILATION WAS PRIORITIZED
OVER THE QUALITY AND CONTENT OF
EDUCATION.
THESE ARE JUST EXAMPLES OF A
MUCH LARGER HISTORICAL CONTEXT.
SO THE OVERALL OBJECTIVE IS TO
UNDERSTAND RISK FACTORS FOR
ALZHEIMER'S, DEMENTIA AND
VALIDATE MEASUREMENT OF
COGNITION USING STANDARDIZED
TESTS, NIH TOOLBOX.
VERSION 2 MANUAL TOOLBOX
SPECIFIC ADMINISTRATION GUIDE
VIDEOS, AS WELL AS
STUDY-SPECIFIC FACE-TO-FACE
ADMINISTRATION GUIDES.
THE PICTURE WITH THE HIGHLIGHT
CODES IS WITH THIS GUIDE THE
TEAM CREATED.
WE HAVE THIS MAPPED OUT WHEN
THEY NEED TO SPEAK OR TAKE AN
ACTION, ET CETERA.
STAFF ARE TRAINED OVER TWO LIVE
VIRTUAL SESSIONS.
AT THAT TIME THEY ARE TOLD THE
TOOLBOX USES COMPUTER-ADAPTIVE
INFORMATION AND ARE CHALLENGING.
THE NOTES ARE TO RECORD
COMMENTS FROM THE PARTICIPANTS
ON THE TOOLBOX AS WELL AS THEIR
OWN OBSERVATIONS DURING
ADMINISTRATION.
THINGS WE WILL COVER TODAY ARE
JUST PRELIMINARY THEMES FROM
STAFF NOTES.
THE DATA FROM OUR RF1 IS STILL
BEING COLLECTED AND ANALYZED
AND OFFICIAL TOOLBOX ITEMS WE
DO NOT HAVE READY TO DO AN
ANALYSIS ON.
BUT THIS IS A PREVIEW, OR
PRELIMINARY REVIEW OF
ADMINISTRATOR FEEDBACK ON THE
TOOLBOX.
FIRST WE ARE GOING TO DISCUSS
FEEDBACK IN RELATIONS TO
TOOLBOX-SPECIFIC TASKS.
PARTICIPANTS NOTED ISSUE WITH
BOTH THE PICTURE VOCAB AND ORAL
READING TASKS AND THE LEVEL OF
CHALLENGE THESE TASKS PRESENTED.
MANY FELT THE WORDS PRESENTED
TO THEM WERE UNFAMILIAR OR THEY
HAD ABSOLUTELY NO CONTEXT TO
DETERMINE THE MEANING OF THE
WORD.
MANY COMMENTS ABOUT THE PICTURE
VOCAB AND ORAL READING TASKS
RESONATED WITH OUR RESEARCH
TEAM BUT WE WOULD LIKE TO
HIGHLIGHT ONE IN PARTICULAR.
ONE MADE HER FEEL UNINTEL --
UNINTELLIGENT AND SHE KNOWS SHE
ISN'T.
SHE GAVE THE EXAMPLE OF BEING
HER GRANDPA'S HEALTH ADVOCATE
AND NEED THIS SCREENER BUT HE
COULDN'T DESCRIBE WHAT HE KNOWS
AND THERE WOULDN'T BE ACCURATE
DIAGNOSIS.
STAFF NOTED PARTICIPANTS
EXPRESSED CONCERNS HOW THE
PRACTICE DIDN'T PREPARE THEM
FOR THE CHALLENGE THE ACTUAL
TASK.
PRACTICE SHOWS FOUR PICTURES
BUT THE TASK REQUIRES MANY MORE
TO MEMORIZE.
A REALLY BIG TEAM WAS AMERICAN
INDIAN CULTURE, PROVIDING
CONTENT FOR FAMILIARITY OR
UNFAMILIARITY WITH TOOLBOX
ITEMS AND TASKS.
FOR EXAMPLE, PARTICIPANT
EXPLAIN WE DON'T OFTEN SEE OR
USE KITES OR ROW A BOAT OR HAVE
ACCESS TO PARKS. DEPENDING IF
WE GREW UP IN THE TOWN OR
COUNTRY.
ANOTHER COMMENT, IN THE SIZE
ORDER TASK PARTICIPANT ASKED
WHICH GROUP THE DUCK GOES IN,
FOOD OR ANIMALS. SHE ASKED THE
SAME OF RABBIT.
LAST WEEK WHEN STAFF MEMBER
NOTED WHEN HE FINISHED HE ASKED
WHY THEY WOULD SHOW HIM THINGS
HE DOESN'T KNOW, IF THEY ARE
WORRIED ABOUT THE STUFF HIS
BRAIN KNOWS OR USED TO KNOW.
I TOLD HIM I WOULD PASS THAT
ALONG, HE SAID YEAH LET ME KNOW
IF THEY KNOW WHAT A GELDING OR
HEIFER IS.
GIVEN OBSERVATIONS AND HOW
DISTRESSED AND HOW WORRIED THE
TOOLBOX MADE THEM.
HERE ARE STAFF NOTES ON
PARTICIPANT SENSORY AND
COGNITIVE IMPAIRMENTS WHICH
THEY WERE NOT MADE AWARE OF
PRIOR TO CONSENTING BUT BECAME
AWARE OF DURING TEST
ADMINISTRATION.
STAFF NOTED PARTICIPANTS WITH
SENSORY OR COGNITIVE
DISABILITIES EITHER FOUND
PARTICIPATION VERY, VERY
CHALLENGING OR NOT AT ALL
POSSIBLE.
ONE COMMENT THAT RESONATED WITH
OUR RESEARCHERS, SHE QUESTIONED
WHY THERE ARE NO ACCOMMODATIONS
IN RESEARCH.
SHE STATED HOW THE ENTIRE
PROCESS WASN'T SET UP PROPERLY
FOR HER.
SHE NEEDS VARIETY OF COLORING,
LARGER FONTS ON INSTRUCTIONS,
GUIDELINES, LED LIGHTS TO HELP
WITH COLOR, MAGNIFIERS INSTEAD
OF HIGH TECH OPTION THAT'S JUST
READ ALOUD.
IN SUMMARY SINCE THE TOOLBOX IS
YET TO BE ROBUSTLY STUDIED IN
AMERICAN INDIAN POPULATION,
FIELD STAFF WHO ADMINISTER IS
CRUCIAL.
DATA COLLECTION FROM SITES IS
STILL ONGOING.
NOTING CONCERNS WITH THE
SPECIFIC TASKS IN THE TOOLBOX.
CHALLENGES WITH THE TOOLBOX
SPECIFIC TESTS RELATED TO
PARTICIPANT'S'DCATIONAL
BACKGROUNDS. DIFFICULTIES WHEN
PARTICIPATING DUE TO VARIOUS
DISABILITIES AND CULTURAL
CONCERNS ESPECIALLY WHEN ASKING
AN ELDER TO CONTINUE WHEN
TESTING WHILE FRUSTRATED.
IN CONCLUSION, OUR FIELD SITE
STAFF CONVEY PARTICIPANTS
REQUEST FOR CONSIDERATIONS OF
ADAPTIONS FOR THE USE OF THE
TOOLBOX IN AMERICAN INDIAN
ADULTS AND COMMUNITIES.
SUGGESTIONS PROVIDED INCLUDE IF
HIGHER LEVEL WORDS NEED TO BE
USED THEY SHOULD BE DRAWN FROM
OFFICIAL DOCUMENTS USED
COMMONLY IN OUR INTERACTION
FROM THE FEDERAL GOVERNMENT.
EXAMPLES SHE PROVIDED,
FIDUCIARY, FEDERAL.
FROM ROUTINE INTERACTIONS WITH
COMMUNITIES WITH THE TRIBE AND
SOCIAL SERVICES THAT HAVE TO DO
WITH LAND, BENEFITS AND
HEALTHCARE.
PARTICIPANT PROVIDED THESE
EXAMPLES OF COMMON ACTIVITIES
EVERYONE DOES FOR THE PICTURE
SEQUENCE MEMORY TASK.
CLEANING HOUSE, DOING RANCH
CHORES, CHANGING A TIRE, GOING
TO A POWWOW OR HUNTING.
THEY CALL FOR DEVELOPMENT OF
STANDARDIZED NIHTB-CB
ACCOMMODATIONS FOR SENSORY
DISABILITIES.
WE WANT TO ACKNOWLEDGE,
VALIDATE AND THANK THE FIELD
STAFF FOR HIGHLIGHTING THESE
CONCERNS AND FOR THEIR ADVOCACY.
THANK YOU.
>> MODERATOR: THANK YOU, AMY.
OUR NEXT SPEAKER IS AMARA
EZEAMAMA.
MICHIGAN STATE UNIVERSITY.
THE TITLE IS HIV DIFFERENCES IN
PERFORMANCE ON NATIONAL
INSTITUTES OF HEALTH, TOOLBOX
COGNITION BATTERY AMONG
CHILDREN AND ADULTS FROM
KAMPALA, UGANDA.
>> AMARA EZEAMAMA: THANK YOU
FOR THE OPPORTUNITY TO SHARE
ONGOING RESULTS FROM OUR STUDY.
IT'S THE PRODUCT OF
COLLABORATION FROM SEVERAL IN
OUR TEAM, AND COLLABORATION
WITH MICHIGAN STATE SCHOOL OF
MEDICINE, KAMPALA CAPITAL CITY
AUTHORITY, AND UNIVERSITY OF
MICHIGAN.
WE HAVE AN AMAZING TEAM THAT'S
BEEN FOLLOWING THIS COHORT OF
CHILDREN FOR OVER ABOUT TEN
YEARS NOW.
IT IS A FIRST PERIOD WE ARE
ABLE TO DO THE NIH TOOLBOX, SO
REALLY EXCITED TO SHARE THIS
DATA.
SO AS SOME OF YOU MAY KNOW, WE
ARE DOING THIS WORK IN THE
CONTEXT OF HIV AND A LOT HAS
IMPROVED WITH HIV OVER THE
YEARS.
ESPECIALLY IN TERMS OF CLINICAL
MANAGEMENT.
PEOPLE ARE REALLY SURVIVING.
THE QUESTION THAT WE ARE REALLY
ASKING IS WHETHER THIS
POPULATION IS ALSO THRIVING.
AND ASKING THIS IN WAYS THAT
RELATE TO COGNITIVE AGING.
DESPITE VERY EFFECTIVE THERAPY
NOW WIDELY ACCESSIBLE AND
STARTING EARLIER AND EARLIER IN
THE COURSE OF DISEASE,
COGNITIVE ASSESSMENT, COGNITIVE
CHALLENGES REMAIN A BIG PROBLEM.
ALSO ISSUES OF ASSESSING
COGNITION IN WAY THAT'S IS
ACCURATE, RELEVANT,
REPRODUCIBLE AND CULTURALLY
APPROPRIATE.
MANY DIMENSIONS OF ISSUES WITH
COGNITION COME TO BEAR.
QUITE A BIT OF THEM COULD BE
LANGUAGE-DEPENDENT.
UNDERSTANDING THE PATTERNS AND
LONGITUDINAL CHANGE IN
COGNITIVE IS HIGHLY DEPENDENT
AND VALIDATION ASSESSMENT.
SO THIS IS ASSESSING COGNITION
IN CHILDREN AND ADULTS IN OUR
STUDY.
WE ARE DOING THIS IN A CONTEXT
OF A TEAM ASSESSING USING AN
UGANDA ADAPTED BATTERY TO TEST
COGNITION USING PENCIL TEST AND
OTHERS. DR. JORDANY WILL REPORT
THE WORK ON THE CORRELATION OF
THE TOOLBOX AND OTHER MEASURES
IN THE STUDY.
WHAT I'M GOING TO TALK TO YOU
ABOUT IS THE RELATIONSHIP OR
CORRESPONDENCE OF INFERENCE WE
GET WHEN WE COMPARE HIV
DIFFERENCES IN PERFORMANCE AND
TOOLBOX TO WHAT THE INFERENCE
WOULD MAKE WHEN WE DO THE SAME
COMPARISON USING THE UGANDA
ADAPTED COGNITIVE BATTERY THAT
WE HAVE BEEN IMPLEMENTING.
SO IN TERMS OF OUR APPROACH,
THIS WORK IS DONE IN THE
CONTEXT OF A PERSPECTIVE COHORT
STUDY.
WE ENROLLED IN THIS STUDY BASED
ON PERINATAL HIV STUDY.
FOCUS ON 6-18-YEAR-OLD CHILDREN.
BECAUSE WE OFTEN STUDY CHILDREN
IN THE CONTEXT OF THEIR
CAREGIVERS WE ALSO ENROLLED FOR
EACH CHILD A CAREGIVER SPEAKING
FOR THEM.
PLEASE IGNORE THE 300 THAT IS
THERE, THAT'S AN EDIT I FORGOT.
WE ENDED UP WITH ABOUT 750
CHILDREN IN THIS 12UDY.
THEY ARE GOING TO BE 250 THAT
ARE PERINATALLY EXPOSED
INFECTED AND 250 EXPOSED
UNINFECTED AND UNEXPOSED AND
UNINFECTED.
FUNCTIONAL OUT COMES MEASURE
COGNITION WHICH IS WHAT I WILL
SHOW YOU BUT WE ALSO MEASURE
RANGE OF PHYSICAL AND MENTAL
HEALTH OUTCOMES AS WELL AS
QUALITY OF LIFE IN THIS STUDY.
WE ARE ASSESSING THESE OUTCOMES
REPEATEDLY ON AN ANNUAL BASIS.
THIS IS JUST TO GIVE A SENSE OF
HOW WE RECRUITED IN THIS STUDY.
WE ENDED UP WITH 750 CHILDREN
BETWEEN 6-18 YEARS.
THIS IS THE FOURTH IN A SERIES
OF PRIOR STUDIES THAT HAVE GONE
BEFORE.
WE CALL THAT THE PHAPS4.
IT COMBINES THE COHORTS. WE
ENROLLED 300 CHILDREN THAT ARE
6-10 YEARS OLD.
WE FOLLOWED THEM PERSPECTIVELY
AS WELL AND ALSO FOR ENROLLED
CAREGIVERS. A CAREGIVER COULD
HAVE MULTIPLE CHILDREN IN THE
STUDY.
IN R21 COHORT WE ENROLLED 450
CHILDREN THAT BELONGED TO 268
CAREGIVERS. WE COMBINED THIS
COHORT BUT ALSO ENROLLED NEW
PARTICIPANTS AS PART OF ARROW 1.
SO ABOUT 58% OF THOSE IN THE
ARROW ONE ARE FROM OUR LEGACY
PHAPS COHORT AND THE REST OF
THEM ARE NEW FOR THIS PROJECT.
EVERYONE IN THIS STUDY IS
SEEING AN NIH TOOLBOX FOR THE
FIRST TIME.
I WILL SHOW YOU EVERYONE WHO
GOT TESTED FOR TOOLBOX AND
EVERYONE WHO GOT TESTED FOR THE
COGNITIVE BATTERY.
THIS IS JUST TO SUMMARIZE WHAT
I WAS TELLING YOU WITH MUCH
KEENER PICTURES FROM OUR
STUDIES.
WE BASICALLY ASSEMBLED BASED ON
NO NEW HIV STATUS, PERINATAL
EXPOSURES AND ULTIMATELY
STUDYING CHILDREN AND CAREGIVER
PAIRS.
SO THESE TWO INDIVIDUALS,
BELIEVE IT OR NOT, ARE ACTUALLY
IDENTICAL TWINS. ONE OF THEM
ENDED UP ACQUIRING HIV.
AND YOU COULD GUESS WHICH ONE.
BUT AT THE TIME WE ARE
INTERVIEWING THIS FAMILY, THE
BOYS WERE 16 YEARS OLD AT THAT
POINT.
IT JUST GIVES YOU ONE WAY TO
VISUALLY SEE THE DIFFERENCE
LIVING WITH HIV VERSUS BEING
HIV EXPOSED AND NOT INFECTED.
ONCE YOU HAVE THAT INFORMATION
YOU LOOK AND SEE THEY ARE
IDENTICAL TWINS.
WE USED THE NIH TOOLBOX
COGNITIVE BATTERY VERSION TWO
IMPLEMENTED AT INTAKE AND EVERY
12 MONTHS WE HAVE THREE
REPEATED CYCLES OF ASSESSMENT.
ON A TABLET COMPUTER.
WE TRANSLATE TO THE LOCAL
LANGUAGES AND READ THE
INSTRUCTIONS OUT AS THE
PARTICIPANTS PERFORMED THE TEST
ON THEIR TABLETS.
SO WE DEFINED FOUR DOMAINS OF
COGNITION ACCORDING TO WHAT WAS
MEASURED IN THE TOOLBOX.
WE HAVE EXECUTIVE FUNCTION.
AND THEN THAT IS USING THE
DIMENSIONAL CARD SORT TEST.
THE PROCESSING SPEED AND
ATTENTION USING FLANKER AND
EPISODIC MEMORY USING THE
CORRESPONDING TOOLS IN THE
TOOLBOX.
I DIDN'T BOTHER TO TELL YOU
ABOUT UGANDA-BASED COGNITIVE
BATTERY, WE HAVE A SUITE OF
EIGHT TEST THAT'S COVERS A
WHOLE RANGE OF DOMAINS. WE MAP
THEM IN TERMS OF SIMILARITY OF
COGNITIVE DOMAINS. JUST TO GIVE
COMPARISON OF OTHER THINGS WE
CONTROL FOR, BEFORE I SHOW YOU
OUR RESULTS, WE CONTROL FOR
EDUCATION, AGE, BIOLOGICAL SEX,
AND THEN ALL HIV STATUS IS
CONFIRMED IN THE LABORATORY
CONFIRMED AND THEN IN CHILDREN
WE HAVE THE THREE GROUPS
BECAUSE IT IS PERINATAL HIV
STATUS, YOU ARE EITHER EXPOSED
AND INFECTED OR EXPOSED
UNINFECTED.
THEN IN ADULTS WE DID NOT
DISTINGUISH BETWEEN MODE OF
ACQUISITION.
WE CONFIRMED YOU WERE HIV
NEGATIVE AT ENTRY.
IN TERMS OF DESCRIPTIVE
ANALYSIS WE SUMMARIZED TEST
MEASURES ACCORDING TO HIV
STATUS AND DEVELOPMENTAL STAGE.
WE DON'T LUMP THE CHILDREN AND
CAREGIVERS TOGETHER BECAUSE OF
THE VAST DIFFERENCES OF THEM.
WE ESTIMATE MEAN DIFFERENCES
AND VARIABLES. WE LOOK AT
CORRESPONDENCE BETWEEN HIV
STATUS AND RESPECTIVE
APPROACHES WE DID.
THIS GIVES A SENSE WHO WE
ENROLLED THAT HAD COMPLETE DATA.
THE INFECTED CHILDREN WERE A
LITTLE BIT OLDER THAN THEIR
PEERS. THERE WERE NO
DIFFERENCES BY AGE.
IF YOU LOOK AT TREND OF NIH
TOOLBOX 4 YOU ARE BASICALLY
SEEING WE HAVE THE LOWEST SCORE
IN THE INFECTED CHILDREN,
INTERMEDIATE IN THE EXPOSED
UNINFECTED AND CONTROL CHILDREN
HAVE THE HIGHEST SCORES ON
AVERAGE.
THOSE ARE JUST MEANS AND
STANDARD DEFENCE YIGS.
-- DEVIATION.
ADULTS WE HAVE 249 LIVING WITH
HIV, 147 WITHOUT HIV.
THE ADULTS WITH HIV ARE A
LITTLE OLDER, THEY LIVED WITH
HIV FOR AVERAGE OF 14.5 YEARS
BEFORE WE ENROLL THEM.
YOU SEE SIMILAR TRENDS, CONTROL
ADULTS OUTPERFORMING ON AVERAGE
THE ADULTS LIVING WITH HIV FOR
THIS MEASURE.
NOW I JUST WANT TO SHOW YOU THE
RESULTS BACK TO THE CHILDREN.
AND JUST SHOWING YOU HOW THE
CHILDREN LIVING WITH CPH IV AND
CHEU.
YOU SEE THE GREATEST DEFICIT
FOR THE AFFECTED CHILDREN, CHEU
IS AT A DISADVANTAGE, LESS SO
BUT CONSISTENTLY.
THAT'S REPLICATED IN ALL OF
THEM, EXCEPTION OF PARENT PAIR,
AVERAGE DEFICIT CHEU BUT THAT
WAS NOT EXCLUSIVELY SIGNIFICANT.
THIS GIVES A SENSE OF THE SAME
SOUTH -- ASSOCIATION FOR
CHILDREN TEST THAT'S CORRESPOND
TO THOSE MEASURES.
WE REPLICATE ASSOCIATION FOR A
INFECTED CHILDREN AND WE DON'T
SEE DIFFERENCE WHEN'S WE LOOK
AT EXPOSED UNINFECTED WHEN
COMPARED TO CONTROL KITS.
SHOWING ADULTS, WE SEE LARGELY
NO DIFFERENCE FOR HIV STATUS
FOR ADULTS WITH ONE EXCEPTION,
PARENT COMPARISON WAS SOMEWHAT
LOWER IN THE INFECTED
POPULATION COMPARED TO
UNINFECTED CONTROL.
THIS RESULT, IF YOU LOOK AT
THE, WHAT IS MY RIGHT-HAND
SIDE, YOU BASICALLY SEE THE
SAME RESULTS FOR UGANDA TEST
BATTERY.
YOU SEE THERE'S NO ASSOCIATION.
AND THE DEFICIT WE SEE IS NOT
REPLICATED.
OKAY, SO I AM OUT OF TIME.
MESSAGES REPLICATE ASSOCIATION
BETWEEN HIV AND DEFICIT IN THIS
PERFORMANCE FOR THE TWO BATTERY.
AND IN THE TEST TOOLS WE HAVE
BEEN USING IN THE PAST.
IN ADULTS WE DON'T SEE THAT
MESSAGE IS REPLICATED.
THE ONE WE SAW WHERE WE SAW A
DIFFERENCE WAS NOT CONFIRMED BY
OUR OLD TEST.
OUR DATA SUGGESTS OTHER MAY BE
IMPORTANT IN ADULTS WE DON'T
HAVE TIME TO TELL YOU ABOUT ALL
OF THOSE NOW BUT HAPPY TO
ANSWER THOSE THROUGH QUESTION
AND ANSWER.
I WANT TO THANK YOU FOR
LISTENING BUT ALSO THANK OUR
FIELD TEAM AND KIDS THAT KEEP
US GROUNDED IN TERMS OF WHAT WE
DO.
THANK YOU.
>> MODERATOR: THANK YOU VERY
MUCH.
OUR NEXT SPEAKER IS DR. BRUNO
GIORDANI FROM UNIVERSITY OF
MICHIGAN AS WELL-OH MY
GOODNESS, SORRY.
NIH TOOLBOX ASSESSMENT OF
COGNITION, CORRESPONDENCE WITH
PERFORMANCE-BASED
NEUROPSYCHOLOGICAL ASSESSMENT
OF ADULTS AND CHILDREN FROM
UGANDA.
>> BRUNO GIORDANI: I'M GOING TO
PRESENT SOME OF THE DATA
RELATED TO WHAT AMARA PRESENTED
BUT WE ARE GOING TO PRESENT
SOME MORE BASIC DATA ABOUT AGE
AND SEX DIFFERENCES AND SOME OF
THE CORRELATIONS WITH
NEUROPSYCH MEASURES.
THIS IS OUR TEAM ON THE LEFT.
YOU COULD SEE IT COMES FROM
MANY SITES.
AND WE HAVE TO ACKNOWLEDGE NIH
WHICH REALLY PAID FOR QUITE A
BIT OF THIS RESEARCH THAT'S
BEEN GOING ON FOR QUITE SOME
TIME.
ALTHOUGH WE JUST GOT THE DATA
LAST WEEK.
LET ME TALK ABOUT, IN TERMS OF
INTRODUCTION THERE ARE A COUPLE
OF EXAMPLES OF STUDIES THAT
HAVE USED CHILDREN IN AFRICA IN
TOOLBOX.
ONE IS A SAMPLE FROM ZAMBIA
THEY USED WHAT'S CALLED A
SCRIPTED VERSION.
THEY TRANSLATED THE MEASURES
AND THEN THEY OVER READ THEM
OVER THE TESTS.
DUFFEY IN KENYA HAS DONE A
FANTASTIC JOB.
TOOK QUITE A WHILE TO DO IT BUT
IT ALSO INCLUDED ALTERING SOME
MEASURES, AS WELL AS
SUBTRACTING AND ADDING SOME
TEST ITEMS.
WE ARE GOING TO PRESENT HERE
BECAUSE THAT VERSION,
UNFORTUNATELY, IS AVAILABLE
OUTSIDE OF TOOLBOX AND IS
RATHER COSTLY.
AND BECAUSE WE HAD STARTED THIS
IN THE MIDST OF OUR STUDY WE
COULDN'T USE IT.
SO I WILL PRESENT DATA FROM OUR
SCRIPTED MEASURES THAT LOOK AT
TOOLBOX AND THEY ARE COMPARED
TO THE SORT OF STANDARD HIV
BATTERY DEVELOPED BY DR.
NAKASUZIA YEARS AGO.
WE, LIKE ALL THE OTHER STUDIES
DROPPED THE CRYSTALLIZED
MEASURES.
DROPPED SORTING WORKING MEMORY.
WE FOUND IN PRE-TESTING IT
REALLY DIDN'T WORK WELL WITH
OUR POPULATION.
WE BACK TRANSLATED.
BOTHERED THE TOOLBOX STAFF
QUITE A BIT ABOUT ALL THIS,
GETTING THEM BACK AND FORTH AND
WE APPRECIATE THAT.
WE ALSO STARTED ALL TASKS
BECAUSE WE WEREN'T SURE ABOUT
EDUCATION.
OTHER EFFECTS WE STARTED ALL
TASKS AT THE LOWEST LEVEL
EXCEPT FOR FLANKER WHERE THE
CHILDREN BELOW 8 GOT THE FISHES
AND EVERYONE ELSE GOT THE
ARROWS. I'M PRESENTING
UNCORRECTED STANDARD SCORES
BASED ON THE OVERALL TOOLBOX
SAMPLE, BECAUSE FOR THESE
UNCORRECTED SCORES WE WANTED TO
GET AN IMAGE HOW EVERYTHING
LOOKED.
ALL THESE CHILDREN ARE TESTING
NAIVE, WE HAVEN'T USED KIDS
TESTED BEFORE TO TRY TO KEEP
THINGS AS CLEAR AS POSSIBLE.
THESE ARE THE STUDIES YOU HAVE
ALREADY SEEN.
THIS IS THE SOCIAL DEMOGRAPHIC
DATA RELATED TO THAT.
IN ADULTS YOU COULD SEE THE
AGES WERE IN THE LATE 30s.
EDUCATION WAS A SLIGHT
DIFFERENCE, WELL NOT A SLIGHT,
IT WAS A DIFFERENCE CLOSE TO
TWO YEARS BETWEEN ADULTS WITH
HIV AND THOSE WITHOUT, WHICH IS
NOT UNEXPECTED.
REMEMBER THESE ADULTS ARE
PREDOMINANTLY FEMALE, OR HEAVY
ON FEMALE BECAUSE THIS WAS A
SELECTED SAMPLE, ESSENTIALLY,
BECAUSE THESE ARE PARENTS OF
THE CHILDREN.
BUT WHEN LOOK TO THE CHILDREN
YOU SEE THERE ARE NO AGE AND
GENDER DIFFERENCES.
THIS IS OUR TOOLBOX BATTERY,
YOU HAVE SEEN THESE THINGS, I
WON'T BELABOR THIS.
IN TERMS OF TIME THIS IS OUR
UGANDA TEST BATTERY.
YOU COULD SEE THERE'S A LITTLE
BIT OF PROBLEMS MOVING FROM MAC
TO PC.
I START CERTAIN MEASURES HERE
BECAUSE THIEZ WERE THE TASKS
THAT MOST CONSISTENTLY
CORRELATED WITH THINGS.
I AM JUST GOING TO SHOW THOSE,
LIKE DIGITS SPAN BACKWARDS.
INTERESTINGLY, TRIAL 6 OF THE
AUDITORY VERBAL LEARNING TASK,
WHICH IS THE INTERFERENCE TRIAL
IS THE ONLY TRIAL THAT
CORRELATED WITH ANY OF OUR
MEASURES.
THE PROCESSING SPEED, EXECUTIVE
FUNCTION MEASURES, ALL OF THEM
CORRELATED EXCEPT VERBAL
FLUENCY WHICH IS INTERESTING AS
A VERBAL TASK.
FOR MOTOR COORDINATION WE ONLY
INCLUDE GAIT BECAUSE THAT WAS
THE ONLY MEASURE THAT SHOWED
ANY RELATIONSHIP AND WE WERE A
LITTLE SURPRISED THERE.
THESE ARE THE AGE DIFFERENCES
ACROSS CHILDREN.
YOU COULD SEE THERE ARE STRONG
DIFFERENCES ACROSS THESE
MEASURES, AS WE WOULD EXPECT,
WITH UNCORRECTED STANDARDS
SCORES INCREASING ACROSS THE
AGE RANGE FROM 10-16, ACROSS
ALL MEASURES I WOULD DRAW YOUR
ATTENTION TO THE INTERESTING
FACT, PICTURE MEMORY REALLY
SCORES IN THE LOW AVERAGE TO
AVERAGE RANGE CONSISTENTLY.
PATTERN COMPARISON, AS I SEE
SOMETIMES HERE IN THE U.S. ARE
THE LOWEST SCORES.
FOR ADULTS WE DON'T SEE
DIFFERENCES EXCEPT ON PICTURE
MEMORY WHICH IS INTERESTING.
WHERE WE BEGIN TO SEE A LITTLE
BIT OF A DROP OFF WITH AGE BUT
PARTICULARLY WITH THE OLDER
POPULATION.
SEX RELATED DIFFERENCES, THERE
ARE NONE IN THE CHILDREN.
AMONG THE MALES, THERE'S A
LITTLE BIT, YOU KNOW, IT'S
THOSE MALES DID A LITTLE BIT
BETTER THAN FEMALES ON PICTURE
MEMORY TESTS.
I'M JUST GOING TO PRESENT THE
CORRELATIONS THIS WAY OTHER
THAN PICTURES AND OTHER THINGS,
BECAUSE I WANTED YOU TO SEE THE
RELATIONSHIPS ACROSS THOSE ARE
THE GROUPS LIVING WITH HIV,
WITHOUT HIV, CHILDREN
PERINATALLY ACQUIRED HIV,
EXPOSED, UNINFECTED AND THE
CONTROL GROUP OF UNEXPOSED
UNINFECTED BUT THIS SHOWS YOU
SOME ISSUES THAT SHE UP.
ADULT LIVE FOR FLANKER, YOU
COULD SEE STRONG CORRELATIONS
ESPECIALLY IN THE CONTROL GROUP.
BUT FOR CHILDREN THERE'S A
LITTLE BIT LESS CLEAR PATTERN
WITH FLANKER.
AND ACTUALLY DIGITS SPAN SINGLE
DIGIT MODALITY IS MORE
CONSISTENT.
AGAIN THE CONTROL KIDS LOOKED A
LITTLE BIT -- IN PATTERN
COMPARISON YOU SEE A SIMILAR
THING.
AGAIN EMPHASIS BECAUSE OF
COGNITIVE TEST ON COLOR TRAILS
ONE AND TWO, SINGLE DIGIT
MODALITIES.
THE CONTROL CHILDREN LOOK QUITE
SIMILAR.
BUT WHAT IS INTERESTING HERE IS
WALKING SPEED FOR THE EXPOSED
UNINFECTED AND THE CONTROL
CHILDREN, ACTUALLY CORRELATED
PATTERN COMPARISON ACTUALLY
CORRELATED WITH WALKING SPEED.
FRANKLY WE HAVE SEEN THIS IN
SOME OF OUR DATA TOO HERE,
WHICH IS KIND OF AN INTERESTING
FEATURE WE WANT TO LOOK A
LITTLE MORE TIME AT.
IF YOU LOOK AT DIMENSIONAL
CHALLENGE CARD SORT, THE
EXECUTIVE MEASURE YOU COULD SEE
CONSISTENTLY FOR ADULTS YOU GET
STRONG CORRELATIONS ACROSS ALL
OF THESE MEASURES, AS WELL AS
IN CHILDREN, WITH THE EXCEPTION
IN THE PERINATALLY-HIV EXPOSED
UNINFECTED, ONLY ONE THEM, I
FORGOT THE DARK IN THERE IS
THERE, BUT YOU COULD SEE VERY
SIMILAR PATTERNS ACROSS THE
GROUPS.
PICTURE SEQUENCE MEMORY.
INTERESTINGLY ENOUGH, ALL HOLDS
THE COLOR TRAILS 1.
WHICH IS SIMILAR TO TRAILS A,
WHICH IS JUST FOLLOWING THE
SEQUENCE.
COLOR TRAILS 2 REALLY RELATED
TO SOME AS WELL.
BUT IF YOU NOTICE MOST OF THESE
CORRELATIONS ARE WITHIN THE
CHILDREN'S GROUP.
AND THAT'S THE ONLY TIME YOU
REALLY SEE CORRELATIONS WITH
WHO.
SO WE WANT TO SPEND MORE TIME
LOOKING AT THIS, NOW THAT WE
GOT THIS DATA BACK WE WILL
START PAYING A LITTLE CLOSER
ATTENTION.
TAKE-HOME MESSAGES LOW TO
MODERATE CORRELATIONS EVIDENT
ACROSS-THE-BOARD, SAME WITH
ZAMBIA, THEY WERE THE SAME
EXCEPT CLOSER IN MEMORY.
ADULT AND CHILD PATTERNS ARE A
LITTLE DIFFERENT.
PICTURE SEQUENCE MEMORY REALLY
DIDN'T CORRELATE STRONGLY WITH
THE ABLT, EVEN THE CHILD
VERSION WHICH WAS MUCH TO OUR
SURPRISE SO WE WANT TO LOOK AT
THAT A LITTLE MORE CAREFULLY.
IF YOU LOOK AT AMARA'S DATA
WHICH SHOWED BETTER
CORRESPONDENCE IN MANY WAYS TO
THE TOOLBOX MEASURES IT WILL BE
INTERESTING TO LOOK AT.
PICTURE SEQUENCE MEMORY ON AGE
AND SEX EMPHASIZES THE NEED TO
ADJUST THESE VARIABLES. THERE
IS THE CAKE FROM THE FIRST RO1.
DOWN BELOW IS DR. JOREM AND
SAHAR, AND DR. AMARA AND DR.
BRUNO.
BECAUSE I'M THE ONE IN FRONT OF
THE SCREEN THERE'S MORE CAKE ON
THE TABLE.
I HAVE A THING FOR UGANDAN CAKE.
THANK YOU VERY MUCH.
I MADE IT, RIGHT?
OKAY.
>> MODERATOR: YES, YOU NAILED
IT WITH TIME TO SPARE.
I MUST SAY THOSE CAKES WERE
BEAUTIFUL.
I HOPE THEY WERE AS TASTY AS
JUROR JUS.
GORGEOUS.
THE LAST SPEAKER IS DR. MARY
RODRIGUEZ-RABASSA, FROM PONCE
HEALTH SCIENCES UNIVERSITY.
DEVELOPING A SCHOOL READIYNESS
INDEX FOR POPZE COHORT STUDY IN
PUERTO RICO, ENHANCED
INTEGRATED TOOL UNIFYING MENTAL
AND PHYSICAL HEALTH.
>> MARY RODRIGUEZ-RABASSA: GOOD
AFTERNOON.
I'M HAPPY TO BE HERE AND SHARE
WITH YOU OUR WORK.
TODAY WE ARE PRESENTING THE
DEVELOPMENT OF SCHOOL
READIYNESS INDEX FOR THE POPZE
COHORT STUDY.
THESE STUDENTS ARE FROM PUERTO
RICO.
PROBABLY YOU ARE ASKING WHAT IS
POPZE.
POPZE STANDS FOR THE PEDIATRIC
OUTCOMES OF PRENATAL ZIKA
EXPOSURE STUDY.
WE CONDUCT LONGITUDINAL
NEURODEVELOPMENTAL ASSESSMENTS
OF CHILDREN THAT WERE EXPOSED
TO THE ZIKA VIRUS DURING
PREGNANCY.
WE CAN NO -- KNOW THERE ARE
DEVELOPMENTAL CONSEQUENCES OF
THIS EXPOSURE, CONTINUE TO
EVOLVE EVEN IN CHILDREN WITHOUT
MICROCEPHALY AT BIRTH.
JUST FOR EXAMPLE, I WANT TO
SHARE WITH YOU THAT THESE
CHILDREN HAD , AT LEAST ONE
THIRD OF THESE CHILDREN HAD AT
LEAST ONE DEVELOPMENTAL DELAY,
WHEN THEY REACHED 24 MONTHS.
AND ALSO DURING THE 36-MONTH
ASSESSMENT.
WITH HIGHER PREVALENCE DURING
THE 24 MONTH ASSESSMENT.
WE WANTED TO, THE MAIN OUTCOME
OF THIS STUDY WAS TO IDENTIFY
-- WELL, TO ASSESS THESE
CHILDREN SCHOOL READINESS
SKILLS WHEN THEY REACH 5 YEARS
OLD.
WE ENCOUNTERED DIFFICULTIES IN
IDENTIFYING VALID TOOLS THAT
INCORPORATES MULTI-DIMENSIONAL
ASSESSMENTS.
WE DECIDED TO DEVELOP THIS FULL
READINESS INDEX BASED ON THE
LITERATURE.
HERE WE INCORPORATE THIS
MULTI-DID --
MULTI-DIMENSIONAL ASPECTS OF
THE SCHOOL READINESS, INCLUDING
THE CLINICAL EXPERTISE OF
PSYCHOLOGISTS AND PEDIATRICIANS.
HOW DID WE CARRY OUT THIS
PROCESS?
WE COMPLETED ASSESSMENTS OF 119
CHILDREN, INCLUDING BOTH
EXPOSED AND UNEXPOSED CHILDREN.
THE ASSESSMENT INCLUDED
MULTIPLE PERSPECTIVES,
INCLUDING PEDIATRICIANS,
CLINICAL PSYCHOLOGISTS AND
PARENTS.
AND TO DEVELOP THIS INDEX WE
USE TEN VALID AND STANDARDIZED
INSTRUMENTS FROM WHICH WE
OBTAINED 25 SCHOOL READINESS
INDICATORS.
WITH THESE 25 INDICATORS WE
COMPUTED THEIR SCHOOL READINESS
IN THIS SCORE.
WE USE BINARY SCORING SYSTEM OF
0 AND 1 POINT.
AND THESE 25 INDICATORS ARE
DISTRIBUTED ACROSS FIVE
DOMAINS. WHICH ARE EARLY
LEARNING SKILLS.
PHYSICAL HEALTH.
SOCIAL EMOTIONAL DEVELOPMENT.
COGNITIVE SKILLS AND APPROACH
TO LEARNING.
THE ASSESSMENT OF EACH
INDICATOR IS DETERMINED BY
CUT-OFF POINTS IN THE TEST USED
TO EVALUATE WHETHER THE CHILD
POSSESSES THE SKILL AT THE
EXPECTED LEVEL.
WHICH IS CONSIDERED ON TRACK.
AND AWARDED ONE POINT.
IF THEY ARE BELOW, THEY ARE
CONSIDERED AT-RISK OR DELAYED,
AND ZERO POINTS ARE AWARDED.
WE USE DESCRIPTIVE ANALYSIS AND
LINEAR REGRESSION MODELS.
ADJUSTED FOR CHILD SEX AND
HOUSEHOLD INCOME.
HERE WE HAVE THE REPRESENTATION
THE FIVE DOMAINS AND MEASURES
USED TO ASSESS EACH OF THEM.
THEY ARE COLOR-CODED FOR
CLARITY.
LET'S DELVE INTO EACH ONE IN
MORE DETAIL.
THE EARLY LEARNING SKILLS
DOMAIN HAS MAXIMUM OF SIX
POINTS.
AND FOR THE COMPUTATION WE USE
THREE QUESTIONS THAT THE
PEDIATRICIAN ASKED TO THE
PARENT.
AND THESE QUESTIONS ARE IF
OTHERS CAN UNDERSTAND THE
CHILD, IF THE CHILD CAN EXPRESS
ORGANIZED IDEAS AND IF THE
CHILD COULD RETELL A STORY
LOGICALLY.
IF THE ANSWERS ARE AFFIRMATIVE,
WE AWARD ONE POINT FOR EACH ONE.
WE ALSO USE FINDINGS IN THE
PREACADEMIC SKILLS MEASURED
THROUGH THE BATTERY IV WHICH
LIKE WICA JOHNSON TEST.
HERE WE ASSESS LETTERS,
WRITING, ABILITY TO WRITE
LETTERS AND ACCOUNT AND POINTS
ARE AWARDED IF THE CHILD'S
PERFORMANCE IS AT LEAST ONE
YEAR BELOW THEIR CHRONOLOGICAL
AGE.
THE PHYSICAL HEALTH DOMAIN ALSO
HAS A MAXIMUM OF SIX POINTS.
THE COMPUTATION INCLUDES
PEDIATRICIAN EVALUATION,
DETERMINING IF THE CHILD IS
HEALTHY OR NOT.
AND IF SO, ONE POINT IS AWARDED.
THE FINDINGS FROM SENSORY
ASSESSMENT THROUGH THE
INSTRUMENT BASED VISION AND
HEARING SCREENING ASSESSMENTS,
ONE POINT IS AWARDED FOR EACH
IF PASSED.
FINALLY ONE POINT ADDED FOR
EACH OF THE FINE AND GROSS
MOTOR MEASUREMENTS FROM THE
QUESTIONNAIRE, CONSIDERING AGE
BASE CUT-OFF SCORE.
AND WE USE TOTAL QUOTIENT IN
THE PEABODY USING CUT-OFF SCORE
OF 90.
FOR SOCIAL EMOTIONAL
DEVELOPMENT DOMAIN, WE USE NIH
TOOLBOX PROXY, BATTERY AND AGES
AND STAGE SOCIAL EMOTIONAL
QUESTIONS.
WE USE STANDARD DEVIATION AS
THE CUT-OFF POINT FOR POINT
ALLOCATION.
CONSIDERING THE TYPE OF EMOTION
MEASURED.
FOR EXAMPLE, FOR POSITIVE
EMOTIONS ONE POINT WAS AWARDED
IF THE T-SCORE WAS 40 OR HIGHER.
BUT FOR NEGATIVE EMOTIONS, ONE
POINT WAS AWARDED IF THE
T-SCORE WAS LESS THAN 60.
FOR AGES AND STAGES OF SOCIAL
EMOTIONAL QUESTION WE USE
AGE-SPECIFIC CUT-OFF SCORE OR
ALLOW TO SCORE THIS ITEM.
FOR THE COGNITIVE SKILL DOMAIN
WE USE COGNITIVE SCHOOL TOOLBOX
BATTERY.
FOR EACH OF THE TOOLBOX
MEASURES ONE POINT WAS AWARDED
IF THE COMPOSITE SCORE WAS
GREATER THAN 86.
AND WE ALSO USED THE AGES AND
STAGE 3 LANGUAGE DEVELOPMENT
AND AGAIN BASED, IT WAS THE
SCORE DETERMINATION WAS BASED
ON THE AGE-SPECIFIC CUT OFF.
FOR THE APPROACH TO LEARNING
DOMAIN, SORRY, THIS HAS A
MAXIMUM OF TWO POINTS.
AND THESE ARE DERIVED FROM THE
SIMULATION, EMOTIONAL SUPPORT
MEASURES OF THE HOME, SHORT
FORM.
THIS IS A HOME OBSERVATION
MEASUREMENT OF THE ENVIRONMENT
TEST.
THIS HAS SIX AND FIVE QUESTIONS
RESPECTIVELY.
PRODUCING THE SAME NUMBER OF
POINTS.
AND SINCE THE TEST DOES NOT
HAVE A CUT-OFF SCORE, THE SCORE
WAS DISTRIBUTED INTO -- ONE
POINT WAS AWARDED IF THE SCORE
FELL BETWEEN THE SECOND AND
THIRD TOTAL.
SO WHAT WAS THE FINDING?
THE SEX DISTRIBUTION WAS ALMOST
50/50.
ONE THIRD OF THE CHILDREN WERE
ENROLLED IN SPECIAL EDUCATION
PROGRAMS.
[TERTILE]
HALF FAMILIES HAVE INCOME BELOW
$50,000.
AND MOST HAD PUBLIC HEALTH
INSURANCE.
-- BELOW $15,000.
WE OBSERVE THE STANDARD
DEVIATION IN EACH OF THE
DOMAINS AND INDEX, WITH THE
MAXIMUM SCORE ON THE RIGHT.
WE COULD SEE THERE APPEARS TO
BE GREATER DIFFICULTY WITH
EARLY LEARNING SKILLS.
WHICH ARE THE PRE-ACADEMIC
SKILLS.
ON AVERAGE, THE SCHOOL
READINESS INDEX WAS 18 POINTS,
WITH A MAXIMUM OF 25.
INDICATING ROOM FOR IMPROVEMENT.
IN A LINEAR REGRESSION MODEL,
ADJUSTED FOR HOUSEHOLD INCOME
AND CHILD SEX WE FOUND THAT
CHILDREN NOT ENROLLED IN
SPECIAL EDUCATION PROGRAMS HAD
SIGNIFICANTLY HIGHER SCORES
THAN ENROLLED CHILDREN.
THIS SUGGESTS THAT THE INDEX
HAS DISCRIMINANT VALIDITY.
THEREFORE WE CONCLUDE THAT THE
SCHOOL READINESS INDEX
ASSESSMENT IS A COMPREHENSIVE
MULTI-SOURCE AND VALUED TOOL
THAT COULD HELP EDUCATORS,
PARENTS AND CLINICAL PROVIDERS
IN UNDERSTANDING AND SUPPORTING
THE EARLY LEARNING READINESS
INTERVENTIONS FOR LIFE LONG
LEARNING AND ACADEMIC SUCCESS.
THANK YOU FOR YOUR ATTENTION.
AND I WANT TO ACKNOWLEDGE MY
TEAM.
EVERYONE THAT HELPED US, THAT
MADE THIS WORK POSSIBLE.
THANK YOU.
>> MODERATOR: I'M CONNECT WITH
SOMEONE IN THE BOOTH.
COULD YOU TAKE US TO THE
HOLDING SLIDES.
IT SAYS SCREEN SHARING HAS
STOPPED.
ALL RIGHT.
SO WE HAVE ABOUT 15 MINUTES FOR
QUESTION AND ANSWER.
I ASK THAT FOR THOSE OF YOU WHO
HAVE HERE IN THE AUDIENCE, IN
THE ROOM, IN PERSON, TO PLEASE
COME DOWN TO THE MICROPHONE AT
THE END OF THE STEPS ON THE
RIGHT-HAND SIDE.
AND FOR THOSE OF YOU WHO ARE
LISTENING VIRTUALLY, TO THE
BROADCAST, SORRY, AGAIN, CAN
YOU HEAR ME IN THE CONTROL ROOM?
IF YOU COULD GET BACK TO ONE OF
THE SLIDES.
THANK YOU.
>> SOMEONE IS ON THE WAY.
>> MODERATOR: SOMEONE IS ON THE
WAY.
THANK YOU.
SORRY FOR THAT INTERRUPTION.
AGAIN, IF YOU COULD COME DOWN
TO THE MICROPHONE IT WOULD BE
APPRECIATED SO ALL OF US
JOINING US VIRTUALLY CAN HEAR
THE QUESTION, AND ALSO THAT IT
COULD BE CAPTURED FOR THE
VIDEOCAST.
I BELIEVE WE HAVE A QUESTION.
>> I HAVE TWO FOR YOU, MOLLY.
I'M EMILY HO FROM NORTHWESTERN.
I ENJOYED THE TALKS.
I HAVE TWO QUESTIONS, ONE FOR
THE SECOND SPEAKER AND ONE FOR
THE LAST SPEAKER.
I NOTICED YOU SAID THE ONLY
TEST THAT HAD DIFFERENCES WERE
IN PATTERN COMPARISON AND THE
UGANDAN VERSION, WHICH WAS
ORAL, LIKE RECOGNITION?
WAS IT ORAL SINGLE DIGIT?
THAT WAS FOR YOU.
>> AMARA EZEAMAMA: IN PATTERN
COMPARISON FOR ADULTS WE DIDN'T
FIND IN THREE OUT OF FOR TESTS
EXCEPT PATTERN COMPARISON,
THERE WE FOUND SOMETHING LIKE 2
OF 6 IN ADULTS COMPARED TO
CONTROLS.
I BELIEVE THE CORRESPONDING
TEST IN UGANDA-BASED BATTERY
WAS THE SINGLE DIGIT, THERE WE
DIDN'T SEE ASSOCIATION BETWEEN
HIV STATUS AND PERFORMANCE ON
THE SDMT.
WHICH IS WHERE, WE EXPECTED
SIGNIFICANT BUT AT LEAST
DIRECTIONALLY, SOME WAY TO HAVE
US CONCLUDE THAT THE INFERENCE
WAS THE SAME, WAS SIMILAR.
IN THIS CASE IT WAS NOT SIMILAR.
>> I WANTED TO ASK WHETHER YOU
THOUGHT THERE WAS ANYTHING LIKE
MAYBE CULTURALLY SALIENT IN ONE
OR TWO OF THOSE, EITHER THE
PATTERN COMPARISON, OR THE
UGANDAN ORAL SIMULATED VERSION
THAT COULD HAVE CONTRIBUTED TO
THIS?
>> AMARA EZEAMAMA: WE THOUGHT
BECAUSE THE TOOLBOX MEASURES
WERE LANGUAGE INDEPENDENT AND
PEOPLE HAD A TABLET, THEY SORT
OF PLAYED GAMES, THAT THE
TOOLBOX WAS MORE SENSITIVE.
AND WE REALLY, I DIDN'T GET A
CHANCE TO TALK ABOUT IT, WAS
ABLE TO DISCRIMINATE BETWEEN
NOT JUST, WE BELIEVE THE
TOOLBOX AND BELIEVE IT WAS
PICKING UP A DIFFERENCE, WE
THOUGHT EXISTED BUT COULDN'T
TELL GIVEN THOSE TOOLS.
ESPECIALLY WHEN COMPARING
HEU'S, EXPOSED INFECTED
CHILDREN COMPARED TO CONTROL.
WHEN YOU HAVE A
LANGUAGE-DEPENDENT TEST IN THE
CONTROLS YOU SEE THAT MIDDLE
GROUP WAS DIFFERENT.
WE JUST WANTED TO -- YEAH.
>> WE SAW THE DIFFERENCE IN THE
MIDDLE, IN THE EXPOSED
UNINFECTED GROUP WHICH WE HAD
EXPECTED TO SEE WITH ALL OF THE
TEST, WHICH WE DIDN'T SEE WITH
THE STANDARD MEASURES.
THERE'S SOMETHING ABOUT GIVING
AN ADULT OR A CHILD A TABLET.
AND THEY ENJOY IT AND THEY WORK
ON IT.
AND THEY DO IT AND THEY DO IT
FAIRLY WELL AND HARD SO YOU GET
SOLID MOTIVATION OVER THAT.
WHICH IS A LITTLE BIT EASIER
SOMETIMES BETWEEN SOMEONE
STANDING IN FRONT OF AN
ADMINISTRATIVE TEST WITH A
WATCH.
WE WERE SURPRISED HOW CLEAR.
THERE WAS THE ISSUE WITH
PATTERN COMPARISON, IT SHOWS
THE LOWEST SCORES ACROSS THE
POPULATION.
AND IT IS A SPEEDED TASK.
SINGLE DIGIT MODALITY.
BUT THE FACT IT'S A SPEEDED
QUICK TEST MAY BE WHY IT'S A
LITTLE MORE SENSITIVE.
>> THANK YOU.
AND THE SECOND QUESTION IS, SOO
SO I NOTICED FOR THE SCHOOL
READINESS TEXT FOR EMOTION, YOU
USE PARENT REPORT.
I WONDER IF YOU THINK THE
RESULTS WOULD BE A LITTLE
DIFFERENT IF YOU USE
SELF-REPORT, LIKE CHILD REPORT
ASSESSMENTS. THIS IS RELATED TO
THE TOOLBOX EMOTION BATTERY.
>> MARY RODRIGUEZ-RABASSA:
BASED ON THE AGE OF THE
CHILDREN, IT DOESN'T HAVE --
>> MARY, I WILL ASK YOU TO
SPEAK UP A LITTLE BIT.
EVEN THOUGH, I KNOW IT'S ON.
THANKS.
>> MARY RODRIGUEZ-RABASSA:
OKAY, I WAS SAYING BASED ON THE
CHILDREN'S AGE THEY ARE LIKE 54
MONTHS OLD TO 66 MONTHS.
THE TOOLBOX DOES NOT HAVE
MEASURE, SELF REPORTING
MEASURES FOR THAT AGE GROUP.
WE NEEDED TO USE THE PARENT
REPORT.
THE RESULT MIGHT BE DIFFERENT.
>> AUDIENCE MEMBER: GREAT, I
WANT TO DRAW YOUR ATTENTION
THERE'S RECENT WORK WITH
PROMISE AND EXTENDING DOWNWARD
EXTENSIONS FOR TESTS THAT ARE
VERY SIMILAR, IF NOT IDENTICAL
TO WORDING TO THE EMOTION
BATTERY.
THANK YOU.
>> AUDIENCE MEMBER: I HAD A
QUESTION FOR DR. GIORDANI, I
WAS WONDERING TO WHAT EXTENT IT
WAS A REFLECTION OF AN OVERALL
MEASURE OF DIFFICULTY, OR
BASICALLY SEVERITY OF THE
PATIENT OR WHETHER THERE WERE
OTHER FACTORS YOU THINK WOULD
BASICALLY CAUSE THAT
CORELATION TO BE SEEMINGLY THE
MOST PREDOMINANT?
>> BRUNO GIORDANI: I SEE YOUR
POINT.
WITH TRAILS 2 AS WELL.
EVEN WHEN YOU USE TRAILS A AND
B THERE'S SUCH A HIGH
CORRELATION BETWEEN THE TWO,
IT'S SOMETIMES, I WONDER IF
SOMETIMES IT'S JUST THAT
RELATIONSHIP BETWEEN THE TWO
THAT DRIVES ONE OR THE OTHER TO
BE SIGNIFICANT.
BECAUSE WHEN WE LOOK AROUND YOU
SEE THAT, WELL, THE HEALTHY
CONTROL ADULTS ARE HIGHEST ON B.
THE HIV POSITIVE ARE HIGHEST ON
TRAILS 1, THAT IS.
AND YET ON THE NEXT ONE IT'S A
REVERSE PATTERN.
SO I THINK THERE'S A
RELATIONSHIP BETWEEN THOSE
TESTS THAT IS CLEAR.
BUT REALLY, OVERALL, THOSE KIND
OF MEASURES OF EXECUTIVE
FUNCTION ARE CORRELATED ACROSS
THE TOOLBOX MEASURES.
IT'S A LITTLE BIT OF A DRIFT
THAT SOME PEOPLE HAVE POINTED
OUT, THE TOOLBOX MEASURES
BECAUSE THEY WERE DESIGNED TO
BE EXECUTIVE AND
ATTENTION-BASED, REALLY
CORRELATE WITH A NUMBER OF
THOSE PAPER AND PENCIL MEASURES.
BUT I THINK IT'S INTERESTING TO
SEE, IT'S ALSO INTERESTING TO
SEE WHEN YOU LOOK AT THE ACTUAL
SORT OF VALIDATION BASED ON
DIFFERENCES OF DIAGNOSTIC
CHARACTER, TOOLBOX SEEMS TO
PUSH OUT THE MORE TRADITIONAL
PAPER AND PENCIL MEASURES TO
BEING SENSITIVE ESPECIALLY TO
THAT EXPOSED, UNINFECTED GROUP.
WHICH IS WHAT WE FOUND.
>> AUDIENCE MEMBER: THANKS.
>> MODERATOR: ANY OTHER
QUESTIONS FROM THE AUDIENCE?
I WOULD LIKE TO TAKE AN
OPPORTUNITY TO MAYBE GET AN
EXCHANGE GOING AT THE TABLE.
SO, AMY, YOU KNOW YOUR
PRESENTATION CERTAINLY POINTED
OUT A NUMBER OF THE ISSUES, BUT
JUST DIFFERENCES IN WORKING
WITH THE INDIAN POPULATIONS AND
THE MANY THINGS THAT COME UP,
I'M QUITE AWARE OF SOME OF THEM.
I DON'T REMEMBER HER LAST NAME
BUT SELESTINA?
YES, SO SHE ACTUALLY HAS A
GRANT AWARDED ALONG WITH DR.
SUKI DICEY, FOR STUDYING
BILINGUALISM IN OLDER ADULTS
AND WHETHER OR NOT THIS MAY
CONTRIBUTE TO RESILIENCE.
AT ANY RATE, I HAVE BEEN AWARE
OF SOME OF THE ISSUES AND FACED
BY THIS.
I'M ASSUMING YOUR GROUP STILL
IS INTERESTED IN USING THE NIH
TOOLBOX OR VERY SIMILAR
MEASURES?
BRUNO, I WONDERED IF YOU MIGHT
SPEAK TO, YOU KNOW, HOW YOU
APPROACH THIS IN TERMS OF
DEVELOPING OR MODIFYING,
ADAPTING THE NIH TOOLBOX TO USE
IN UGANDA.
I KNOW YOU SAID YOU TALKED WITH
THE STAFF MANY, MANY TIMES AND
THEY WERE VERY HELPFUL.
>> BRUNO GIORDANI: THEY WERE
HELPFUL BUT TIRED OF BRUNO.
>> MODERATOR: I DON'T THINK
THEY WOULD GET TIRED OF YOU.
>> BRUNO GIORDANI: I THINK
THAT'S A GOOD POINT, UGANDA,
NATIVE AMERICAN POPULATION IN
THE U.S., IT'S OUR EVEN AFRICAN
AMERICAN INDIVIDUALS IN DETROIT.
EACH CULTURAL ADAPTATION HAS TO
BE CONSIDERED.
SO YOU KNOW, I THINK THAT WHAT
WAS DONE IN KENYA WAS TRULY
MARVELOUS.
TOOK A GOOD WHILE.
IS EXPENSIVE AND IN THE END IT
ALWAYS COMES DOWN TO THE
ARGUMENT OF WILL WE ADAPT OUR
OWN TEST WITH THIS ENVIRONMENT
AND DEVELOP IT?
OR WILL WE REALLY START?
WE SEE THE SAME THING WITH
ABORIGINAL KIDS IN AUSTRALIA.
THOSE RAISED WITHIN THE WESTERN
SIDE, THOSE RAISED ABORIGINALLY.
IT'S ALWAYS HARD TO FIND THAT
EVEN MATCH.
WHAT WE FOUND IN UGANDA WE
CLEARLY COULD SEE LIST SORTING
WORKING MEMORY JUST WASN'T
GOING TO WORK.
IT'S INTERESTING THAT IN ZAMBIA
THEY GAVE UP ON PICTURE
SEQUENCE MEMORY THAT WE REALLY
HAD NO PROBLEM WITH IN OUR
PARTICIPANTS DID AMAZINGLY WELL
AT THAT ASK.
WHICH I WOULD CONSIDER SORT OF
THE HARDEST AT THE GROUP.
YET COMPARISON DID HAVE A TIME
EFFECT TO IT.
YOU HAD TO GO AS QUICKLY AS
POSSIBLE AND TEND TO FIND
DETAILS JUST WASN'T AS MUCH OF
A STRONG INTEREST IN THE
POPULATION.
SO YOU HAVE TO CONSIDER THAT
CENTURIES AGO WE LOOKED AT, I
THINK OF MYSELF IN CENTURIES
BUT WE LOOKED AT, YOU KNOW,
HUNTINGTON'S PATIENTS, AND
HUNTINGTON'S AT RISK IN SOUTH
AMERICA.
WE COULDN'T GET PEOPLE TO TAP
THEIR FINGER ON A FINGER BOARD
QUICKLY.
YOU REALLY HAVE TO LOOK AT EACH
CULTURE.
I REALLY WOULD TELL YOU, YOU
HAVE TO LOOK AT EACH OF THESE
MEASURES.
YOU NEED TO CONSIDER HOW TO
ADAPT OR CHANGE INSTRUCTIONS.
HOW TO REALLY POTENTIALLY EVEN
USE THEM IN LOCAL LANGUAGE
RATHER THAN IN ENGLISH.
I MEAN, THAT BECOMES A BIG
ISSUE.
AND IT'S ALL WHO APPROACHES
PERSON TOO, THAT MAKES A
DIFFERENCE.
SO IT'S A CHALLENGE.
>> CERTAINLY, WE JUST WANT TO
SAY THANK YOU FOR THAT.
WE THINK YOU HAVE DEFINITELY
LAID A GROUNDWORK OF HOW TO
APPROACH INDIVIDUALS WITH
DIVERSE BACKGROUNDS. RIGHT.
TO REALLY INTEGRATE THE
TOOLBOX, I THINK THAT'S WHERE
WE ARE KIND OF STARTING WITHIN
OUR OWN STUDY, IS REALLY MAKING
SURE THAT THOSE
COMMUNITY-FACING STAFF ARE
RECORDING THOSE PARTICIPANTS'
INITIAL REACTIONS TO THE
TOOLBOX.
THIS IS THEIR FIRST TIME
INTERFACING WITH THE TOOLBOX.
AND I THINK JUST LIKE YOU SAID,
RIGHT?
JUST MAKING SURE EVERY
INDIVIDUAL IS DIFFERENT.
EVERY COMMUNITY IS DIFFERENT
AND WHAT THEY MIGHT BE FAMILIAR
WITH AND NOT FAMILIAR WITH.
SO REALLY VALIDATING THEIR
CONCERNS BY YOU KNOW, CAPTURING
THOSE NOTES.
AND WE WILL BE THE FIRST TO
SAY, MYSELF AND KYRA THAT THE
STAFF ARE SUCH GREAT ADVOCATE,
I THINK, FOR THE COMMUNITY, IN
SAYING, EVEN DURING THE
TRAININGS, LIKE SAYING THIS IS
WHAT'S GOING TO WORK WITH OUR
COMMUNITY, THIS IS WHAT'S NOT
GOING TO WORK.
AND YOU KNOW, SAYING THAT'S
REALLY IMPORTANT FEEDBACK, WE
NEED TO MAKE SURE WE ARE
CAPTURING THESE NOTES.
BECAUSE THIS HAS NOT BEEN DONE
BEFORE.
IT GROUNDS US ALL IN MAKING
SURE THE COMMUNITY AT THE END
OF THE DAY IS AN ACTIVE
PARTICIPANT [OFF MIC] IS REALLY
IMPORTANT.
SO THANK YOU FOR THAT
PERSPECTIVE.
>> MODERATOR: A QUICK COMMENT?
YES.
WE ARE RUNNING OVER TIME.
>> AMARA EZEAMAMA: SHOWED DATA
IN THE COMMENT FIELD, WE ALSO
HAVE THE COMMENT FIELDS IN OUR
PROJECT.
IT STRUCK ME AS INTERESTING
WHEN SOMEONE SAID WELL I CAN'T
SEE, SO READING BACK WAS NOT
POSSIBLE FOR THEM TO DO.
NOT ALL THESE TESTS COULD BE
DONE.
BUT THE KIND OF COMMENTS I SAW,
LOOKING THROUGH, I'M SORRY WE
DIDN'T PRESENT THAT
INFORMATION, BUT IT WAS MORE
LIKE LIMITATIONS, THEY COULDN'T
TAP, OR SOME PEOPLE WHO
COULDN'T DO THOSE TESTS.
SO IF YOU NOTICE THE NUMBERS
CHANGED A LITTLE BIT.
BUT I THOUGHT, YOU ANALYZED IT
IN A WAY YOU COULD GET IT.
>> MODERATOR: ALL RIGHT, THANK
YOU.
THANKS AGAIN TO THE SPEAKERS.
WE ARE NOW GOING TO BE ON BREAK
FOR A HALF HOUR.
JUST TO LET YOU KNOW THAT THE
POSTER SESSION AND "ASK THE
EXPERT" SESSIONS WILL BEGIN AT
3:45 IN THE ATRIUM.
THIS IS THE LEVEL WE ARE ON.
WHEN YOU EXIT YOU WILL BE OUT
THERE WITH THE POSTERS. AND
THANK YOU FOR THOSE WHO ARE
ONLINE FOR ATTENDING.
WE REALLY APPRECIATE IT.
AND THE CONFERENCE VIDEOCAST
WILL RESUME TOMORROW.
THANK YOU.