WE HAVE A TIGHT SCHEDULE
TODAY SO THAT'S WHY WE'RE
STARTING RIGHT ON TIME.
AND I PROMISE TO BE VERY BRIEF.
MY NAME IS CHERI WIGGS THE
PROGRAM DIRECTOR OF THE LOW
VISION BLINDNESS REHABILITATION
AT THE NATIONAL EYE INSTITUTE
AND IT'S MY PLEASURE TO WELCOME
YOU TODAY WHO ARE GOING TO BE
ENGAGING IN IMPORTANT
DISCUSSIONS.
I THINK THE AIMS ARE CLEAR BUT
THEY'RE WORTH RESAYING RIGHT NOW
WE WANT TO EXPAND AWARENESS OF
CVI, BUILDING CENSUS IN THE
FIELD AND IDENTIFYING TECHNICAL
AND PRACTICAL AGENCY SPECTS OF
CREATING A CEREBRAL VISUAL
IMPAIRMENT REGISTRY.
THAT'S GOING TO INVOLVE
IDENTIFYING ISSUES ON
DIAGNOSTICS AND FOR IDENTIFYING
THE NEXT SCIENTIFIC STEPS THAT
WILL ADVANCE THE FIELD.
SO WE'VE INVITED ALL OF YOU HERE
TO TRULY INFORM THIS EFFORT.
SO IN OUR AUDIENCE AND IN OUR
PARTICIPANTS TODAY, WE HAVE
CLINICIANS, RESEARCHERS IN CVI
AND IN RELATED DEVELOPMENTAL
DISORDERS.
PATIENTS, CAREGIVERS,
OCCUPATIONAL THERAPISTS AND
TEACHERS CERTIFIED IN VISUAL
IMPAIRMENT.
THIS MEETING IS OPEN TO THE
PUBLIC SO IT'S BEING VIDEOCAST
IN REAL TIME AND FOR THOSE OF
YOU WHO ARE TUNED IN WE'RE HAPPY
TO HAVE YOUR ATTENTION.
A FEW QUICK PROCEDURALS.
IF YOU HAVEN'T ALREADY, PLEASE
SILENCE YOUR CELL PHONES.
USE THE MICROPHONES IN THE ROOM
WHEN YOU ARE ASKING QUESTIONS.
FOR THOSE HERE ON THE PODIUM,
YOU'LL HAVE A MICROPHONE
AVAILABLE TO YOU.
AND BECAUSE OF OUR VERY TIGHT
SCHEDULE WE MAY NEED TO REMIND
FOLKS ABOUT TIME KEEPING, PLEASE
DON'T KEEP IT PERSONALLY BUT
WE'RE KEEPING AN EYE ON THE
CLOCK TO MAKE SURE WE HEAR FROM
EVERYONE TODAY.
MANY INDIVIDUALS HAVE PUT QUITE
A BIT OF HEART AND I'D SAY BRAIN
INTO THIS EFFORT AND I WOULD
LIKE TO SHOUT OUT TO DR. GORDON
AND CURVE OF THE NATIONAL EYE
INSTITUTE WHO HAVE BEEN
TIRELESS -- AND OUR CO-CHAIRS,
DR. CHANG AND MERABET AND HAVE
BEEN INSTRUMENTAL AND PERHAPS
MORE TIRELESS IN BRINGING
TOGETHER THIS EFFORT.
THIS MEETING IS A TRANS-NIH
EVENT AND INVOLVED THE NATIONAL
EYE INSTITUTE AND THE NATIONAL
INSTITUTE ON NEUROLOGICAL
DISORDERS AND STROKE AND THE
EUNICE KENNEDY SHRIVER INSTITUTE
OF CHILD HEALTH AND HUMAN
DEVELOPMENT.
I ENDED WITH THE LAST ONE
BECAUSE IT'S AN EXCELLENT SEGUE
FOR ME TO INTRODUCE DR. CRUZ
FROM NIH WHO HAS INTRODUCTORY
REMARKS TO SHARE.
>> WELCOME TO THE CEREBRAL
VISUAL IMPAIRMENT ROAD MAP TO
CONSENSUS AND BUILDING
AWARENESS.
YOUR HOST TODAY ARE THE NATIONAL
EYE INSTITUTE, THE NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT AND THE
NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDERS AND
STROKE.
I ALSO WANT TO WELCOME YOU ON WE
HALF OF CO-CHAIRS, DR. MERABET
OF MASSACHUSETTS, EYE, HERE
MEDICAL SCHOOL AND MELINDA CHANG
OF CHILDREN'S HOSPITAL OF LOS
ANGELES.
I HAVE TO START BY
CONGRATULATING YOU ALL FOR
FINDING THIS ROOM, GETTING
THROUGH SECURITY AND PAST THE
DOGS AND ALL THAT.
SO FIRST, THUMBS UP FOR YOUR
FIRST TRIAL OF THE DAY.
I WANT TO WELCOME ALL THE PEOPLE
ON VIDEOCAST.
PARTICULARLY ANYONE WHO HAS CVI
AND THEIR CAREGIVERS OR CARE
PARTNERS.
I HOPE THEY ARE INCLUDED IN
TODAY'S DISCUSSION.
MY NAME IS THERESA CRUZ.
MY VISUAL DESCRIPTION IS I'M A
MIDDLE AGED WHITE WOMAN WITH
SHOULDER LENGTH BROWN HAIR, BLUE
EYES.
I'M WEARING A DOVE COLORED GRAY
JACKET OVER A POLKA DOT PURPLE
AND WHITE TOP.
I HAVE THE HONOR OF DIRECTING
THE NATIONAL CENTER FOR MEDICAL
REHABILITATION RESEARCH AND I
WANT TO THANK NEI FOR INVITING
US AND PLANNING THE WORKSHOP.
WE HAVE A FULL SCHEDULE SO I'LL
KEEP MY REMARKS BRIEF.
I HAVE HAD MY OWN AWARENESS
BUILDING PROCESS WHEN IT COMES
TO CVI.
I DIDN'T KNOW MUCH ABOUT IT
ABOUT FIVE YEARS AGO CHERI
BROUGHT IT TO MY ATTENTION AND
THERE WAS A WHOLE YEAR OF SIM
POSE UPAND ONE WAS FOCUSSED ON
REHAP AND SHE SAID YOU NEED TO
COME AND I LISTEN TO CHERI.
THAT'S SOMETHING YOU SHOULD ALL
KNOW, YOU SHOULD LISTEN TO CHERI
AND I WAS BLOWN AWAY BY THE
GREAT RESEARCH IN SUPPORTING
VISUAL REHAB AND SHE RECOMMENDED
LOTFI AND THAT WAS MY SECOND
OPPORTUNITY TO LISTEN TO CHERI.
HE WAS WONDERFUL AT OUR
CONFERENCE AND WHEN NICHD AND
NINDS WERE WORKING ON A REBOOT
OF OUR CEREBRAL PALSY RESEARCH
PLAN THE FEEDBACK WE GOT FROM
PARENTS SAYING THAT CVI IS UNDER
DIAGNOSED IN THIS POPULATION AND
WE NEED TO BE DOING MORE.
THAT WAS LOUD AND CLEAR.
AND THEN YOU'RE GOING TO HEAR
ABOUT HOW NEI HAS TAKEN THAT UP
IN THEIR STRATEGIC PLAN NEXT.
SO IT'S BEEN A PLEASURE WORKING
WITH LOTFI AND MELINDA AND TOOK
ME A WHILE TO REALIZE MELINDA
WAS IN CALIFORNIA AND WE WERE
HAVING ALL THESE EARLY MORNING
MEETINGS AND I SAID ISN'T IT
DARK OUT AND SHE'S BEEN
WONDERFUL AS WELL I WANT TO
THANK YOU ALL FOR BEING HERE.
THE OTHER GOALS OF THE WORKSHOP,
BUILDING CENSUS AND SETTING UP
REGISTRIES ARE REALLY HARD
THINGS.
I COMMEND YOU FOR COMING HERE
AND BEING WILLING TO ROLL.
UP YOUR SLEEVES AND DOING ALL IS
THE HARD THINGS AND I APPRECIATE
WHAT YOU'LL BE DOING TO HELP US
MOVE THAT FORWARD.
I WANT TO CLOSE BY ACKNOWLEDGING
THE WORK THAT'S BEEN DONE BEHIND
THE SCENES.
WE HEARD OF SOME KEY PLAYERS BUT
I ALSO WANT TO SAY THE
LEADERSHIP OF NEI, THE
LEADERSHIP OF CHILD HEALTH AND
THE LEADERSHIP OF NINDS ARE VERY
INVESTED.
WITH THAT, I WILL TURN IT OVER
TO MAKE THE DIRECTOR OF NEI,
MICHAEL CHIANG TO COME UP.
>> CHERI AND THERESA TO WELCOME
YOU TO THE SECOND DAY --
TRANS-NIH CVI WORKSHOP.
I'M EXCITED ABOUT THIS AND I
WANT TO SAY A FEW WORDS ABOUT
HOW WE GOT HERE TO BE HERE
TODAY.
SO WHEN I STARTED THIS POSITION
ALMOST EXACTLY THREE YEARS AGO.
ONE OF THE FIRST THINGS WE DID
WAS WE DID THE NEI'S MISSION
STATEMENT.
THIS IS WHAT WE CAME UP WITH.
OUR MISSION AT THE NEI IS TO
ELIMINATE VISION LOSS AND
IMPROVE QUALITY OF LIFE THROUGH
VISION RESEARCH.
AND HOW DO WE DO THAT?
WE PROVIDE LEADERSHIP IN FOUR
AREAS.
NUMBER ONE, WE DRIVE INNOVATIVE
RESEARCH.
TWO, WE FOSTER COLLABORATIONS,
THREE, WE RECRUIT AND INSPIRE
AND
ELIMINATE VISION LOSS IMPROVE
QUALITY OF LIFE.
IN NOVEMBER, 2021 WE PUBLISHED
AN NEI STRATEGIC PLAN ALONG WITH
THE MISSION STATEMENT.
THAT LAYS OUT WHAT OUR
PRIORITIES ARE OVER THE NEXT
FIVE YEARS.
AND WE STARTED TO DEVELOP A
NUMBER OF TARGETED INITIATIVES
TO TRY TO ACCOMPLISH GOALS OF
THIS STRATEGIC PLAN AND IF YOU
WANT TO TAKE A LOOK AT THE
DETAILS IT WAS QR CODE LINKS YOU
TO THAT. GOT A LOT OF COMMUNITY
IT BEGAN WITH THE COMMUNITY AND
WE ASSEMBLED EXPERT PANELS TO
GIVE US AN OVERVIEW OF THE
LANDSCAPE AND LOOKED CAREFULLY
AT THIS AND CAME UP WITH A
STRATEGIC DRAFT AND THIS TOOK
EFFORT AND GOT PUBLIC FEEDBACK
OND THE DRAFT AND REVISED.
WE GOT INPUT FROM OUR NATIONAL
ADVISORY EYE COUNCIL AND
PUBLISHED THE PLAN IN NOVEMBER
2021.
WHEN WE LOOK AT THE REQUEST FOR
INFORMATION 65% OF THE PUBLIC
COMMENTS ADDRESSED CVI.
THAT STRUCK US.
THERE'S REAL GAPS IN KNOWLEDGE
HERE AND SOME OF THOSE GAPS ARE
SUMMARIZED ON THE SLIDE.
NUMBER ONE, WE LACK
EVIDENCE-BASED TOOLS AND
GUIDELINES FOR DIAGNOSTIC OF
DISEASE, CLASSIFICATION OF
DISEASE.
THERE'S A WELL THERE'S NO BIO
MARKERS FOR TEST ASSESSMENT AND
EVALUATION AND WE NEED
STRATEGIES TO MEDE
REHABILITATION NEEDS.
WE NEED GUIDELINES FOR
EVIDENCE-BASED REHABILITATION OF
BRAIN-BASED VISUAL IMPAIRMENTS
BASED ON STANDARDIZED OUTCOME
MEASURES.
THIS IS GOING TO REQUIRE
INTERDISCIPLINARY APPROACHES.
OPHTHALMOLOGISTS AND
PEDIATRICIANS AND PEOPLE WITH
EXPERTISE IN IMAGING,
OCCUPATIONAL THERAPIES AND
EDUCATORS.
AND OVER ALL WE NEED A MUCH
BETTER UNDERSTANDING OF THE
NEURAL BASIS OF CVI.
THAT'S GOING TO LEAD US TOWARDS
A FOUNDATION FOR NEURAL
PLASTICITY BASED THERAPIES.
A LOT OF GAPS IB KNOWLEDGE AND
UP PLANNING THIS WORKSHOP IT'S
TAKEN ALMOST TWO YEARS FOR US TO
GET HERE.
AND THE GOALS OVER THESE TWO
DAYS ARE NUMBER ONE TO BUILD
AWARENESS.
THE GOAL OF THE RESEARCH BY
ENGAGING ADJACENT FIELDS,
SHARING INSIGHTS AND FORGING NEW
COLLABORATIONS IN THE SPIRIT OF
THE NEI MISSION STATEMENT AND DO
WE WANT TO PROMOTE CONSENSUS.
THAT'S BEEN LACKING TO DATE.
WE NEED TO ESTABLISH WHAT
CRITERIA AND DIAGNOSTICS AND
METRICS AND PARAMETERS AROUND
DEFINITIONS TO LEAD US TOWARDS
BEING ABLE TO DEVELOP AND
VALIDATE EVIDENCE-BASED TEST
BATTERIES AND INTERVENTION
PROTOCOLS AND ONE OF THE THINGS
WE WANT AS A TANGIBLE OUTCOME IS
TO DEVELOP A REGISTRY THAT CAN
BE USED TO SUPPORT RETROSPECTIVE
AS WELL AS PROSPECTIVE RESEARCH
STUDIES.
SO WHAT DO WE NEED FOR THAT OVER
THE FEW DAYS?
WE NEED TO DETERMINE REGISTRY
REQUIREMENTS, DATA ELEMENTS,
INCLUSION CRITERIA, STANDARDS
AND ALSO RESEARCH QUESTIONS THAT
WE WANT TO ASK SO WE CAN MAKE
SURE THE REGISTRY IS ABLE TO
SATISFY THOSE NEEDS.
NOW, A LOT OF PEOPLE LED US TO
BE HERE OVER THESE FEW DAYS.
I WANT TO THANK THE EXTERNAL
CO-CHAIRS, DR. CHANG FROM USC
AND DR. MERABET AND NICHD, AND
NINDS.
IT TAKES A TEAM AND I HAVE LOVED
BEING ABLE TO COLLABORATE WITH
THIS GROUP OF PEOPLE.
FINALLY, IF YOU HAVE QUESTION WE
WE HAVE A MAILBOX AND LOOKING
FORWARD TO FOLLOW-UP ON WHAT WE
ESTABLISH.
THANK YOU VERY MUCH.
>> GOOD MORNING.
I'M LOTFI MERABET AND I'M I TALL
MALE, CLEANLY SHAVEN AND WEARING
A JACKET.
I WANT TO THANK EVERYONE FOR
BEING HERE I ALSO HAVE THE
PLEASURE TO CO-CHAIR THIS
WONDERFUL EVENT.
I WANT TO THANK ALL THE MEMBERS
OF THE NEI AND HAVE
REPRESENTATION FROM THE EYE,
BRAIN AND DEVELOPMENT AND
UNDERSTAND HOW COMPLICATED CVI
IS.
THERE'S A SAYING IF YOU GIVE
PEOPLE A VOICE EVENTUALLY
THEY'LL BE HEARD AND THAT'S HOW
CHANGE HAPPENS.
TODAY IS PROOF THAT'S A TRUE
STATEMENT.
IT'S BEEN A LONG JOURNEY AND
HAVE MORE TO DO BUT I THINK IT'S
FANTASTIC.
THANK YOU ALL FOR COMING AND
BEING PART OF THIS.
I'LL PASS IT TO MY COLLEAGUE
DR. CHANG.
>> I'M MELINDA CHANG FROM
CHILDREN'S HOSPITAL LOS ANGELES.
I'LL MAKE THIS SHORT.
WELCOME EVERYONE.
THANK YOU FOR BEING HERE.
THIS IS A TEAM EFFORT AND WE
APPRECIATE EVERYONE'S
CONTRIBUTIONS AND ESPECIALLY
THANK YOU TO THE NIH FOR HOSTING
US.
I FORGOT TO SAY I'M A SHORT
ASIAN FEMALE WEARING A
CREAM-COLORED COAT AND WE'LL
SUMMARIZE YESTERDAY'S WORKSHOP
MEETING.
I DIDN'T HAVE TIME TO BEAUTIFY
THIS BECAUSE WE DID THIS AT
11:00 P.M. YESTERDAY AND MOST
THE SLIDES ARE FROM THE
PRESENTATION DECK FROM THE
PEOPLE OF YESTERDAY SO WE DIDN'T
ACTUALLY MAKE MOST THE SLIDES.
HERE'S SOME TAKE HOME MESSAGES
PRESENTATION BY PRESENTATION.
WE HAD A PRESENTATION BY
DR. SKIP REG AND CVI REQUIRES
MULTI-DISCIPLINARY CARE AND
THERE'S ALL THESE DIFFERENT
SPECIALTIES WHICH ARE INVOLVED
AND WE ALL SEE A PIECE OF THE
ELEPHANT AND GET A FULLER
CENTERING OF THE CVI ELEPHANT
AND USE THIS TO HELP US WITH THE
FAMILIES WHO ARE AFFECTED.
AND THERE WERE TALK ABOUT THE
IDEOLOGIES CAN CAUSE CVI AND
IT'S HETEROGENOUS AND THERE'S
FUNCTIONAL VISION AND AGE OF ON
SET AND WE WANT TO BE ABLE TO
CAPTURE THIS IN THE REGISTRY.
WE KNOW HOW WE MIGHT BE ABLE TO
DO INDIVIDUALIZED OR
PERSONALIZED MEDICINE FOR
PATIENTS IN THE FUTURE.
WE TALKED ABOUT MORE TECHNICAL
DETAILS AND DISORDERS OF OCULAR
MOTILITY ALONE ARE DISTINCT FROM
CVI THOUGH INDIVIDUALS WITH CVI
FREQUENTLY HAVE OCULAR
DYSMOTILITY AND IS CONSIDERED TO
HAVE CVI.
AND WE TALKED ABOUT SOMETHING
THAT HAS BEEN CONTROVERSIAL IN
THE PAST WE ALL AGREED CERTAIN
TYPES OF SEIZURES THOSE THAT
CAUSE ENCEPHALOPATHY MAY BE A
CAUSE CVI.
WE HAD A PRESENTATION ABOUT
TELULA ACUITY.
THERE'S A BLACK AND WHITE
GRADING WITH PRESENTED ON THE
BACKGROUND.
THIS THE CHILD IS ABLE TO
RESOLVE THE FREQUENCY OF THE
GRADING THEY'LL LOOK
PREFERENTIALLY TOWARDS THE SIDE
OF THE GRADING.
ON THE RIGHT THE EXAMINER
PRESENTS THE CARD AND INCREASES
FREQUENCIES UNTIL THEY NO LONGER
PREFERENTIALLY LOOK TO THE SIDE
OF THE GRADING.
ANOTHER WAY IS SOMETHING CALLED
VISUAL POTENTIAL.
SORRY IT'S A BIT BLURRY BUT THE
CHILD HAS THIS SIMILAR TO EEG
BUT FEWER ELECTRODES ON THE
OCCIPITAL LOBE AND LOOK AT THE
STIMULUS WHICH COULD BE A
CHECKER BOARD OR GRADING PATTERN
AND MEASURING THE BRAIN RESPONSE
TO THE VISUAL STIMULUS YOU CAN
GET AN ESTIMATE OF THEIR VISUAL
ACUITY.
WE TALKED HOW THE TELLER AND EC
WAN DETERMINE THIS AT CVI BUT
NOT SUITABLE TO ALL AFFECTED
INDIVIDUALS DEPENDING ON AGE AND
COOPERATION.
ONE THING WAS GRADING ACUITY
ASSESSED IS CONSISTENTLY BETTER
THAN TELLER ACUITY AND THAT'S
WHAT THE GRAPH SHOWS ON THE X
AXIS IS THE PREFERENTIAL LOOKING
ACUITY AND ON THE Y AXIS THE
SWEEP ACUITY.
THIS IS THE LINE OF PERFECT
CORRELATION.
IF THEY WERE MEASURING THE SAME
THING ALL THE DOTS WOULD BE ON
THE LINE BUT ALL THE DOTS ARE
ABOVE THE LINE INDICATING FOR
THE SAME TELLER ACUITY THE SWEEP
ACUITY IS IS HIGHER TO THERE'S A
DISCREPANCY IN THE TYPICALLY
DEVELOPING CHILDREN AND THE
DIFFERENCE USUALLY NARROWS OVER
TIME AND THAT WAS NOT SEEN IN
KIDS WITH CVI.
THERE WAS A THOUGHT THIS IS
POTENTIALLY A BIOMARKER FOR CVI.
AND MY PRESENTATION WAS ON EYE
TRACKING AND FUNCTIONAL VISION
ASSESSMENT AND KIDS WITH CVI AND
HERE'S A SCHEMATIC OF THE THREE
DIFFERENT EYE TRACKING LABS IN
THE U.S.
WE'RE USING THIS TO STUDY LOWER
ORDER VISUAL AND HIGHER ORDER
PROCESSING AND OCULAR MOTILITY
AND ALL OF US ARE STUDYING ALL
THESE THINGS IN TERMS OF OUR
PUBLICATIONS WE PRIMARILY WE
PUBLISHED HOW WE'VE USED EYE
TRACKING TO ASSESS LOWER ORDER
VISUAL ACUITY SUCH AS WITH
CARDS.
WE'VE LOOKED AT EYE TRACKING TO
ASSESS VISUAL SEARCH OR
HIGH-ORDER VISUAL PROCESSING AND
YOU'LL HEAR MORE LATER ON TODAY.
AND THEY'RE LOOKING AT KIDS WHO
HAVE HAD BRAIN INJURY.
HERE'S JUST AN EXAMPLE OF HOW WE
USE EYE TRACKING TO ASSESS
ACUITY IN KIDS WITH CVI.
THIS IS SIMILAR TO A TELLER
ACUITY AND THE BLACK AND WHITE
BACKGROUND AND LOOK TO SEE IF
THE KIDS ARE LOOKING TOWARDS THE
GRADING AND THE RED IS WHERE THE
FIXATIONS ARE LONGER AND GREATER
THAN 50% WERE WITHIN THE AREA OF
THE GRADING THEN THAT GRADING
WAS CONSIDERED TO BE SEEN.
ON THE LEFT IS GRADING SEEN AND
ON THE RIGHT IS GRADING NOT SEEN
BECAUSE LESS THAN 50% OF THE
FIXATIONS WERE WITHIN THE AREA
OF THE GRADING.
HERE'S ANOTHER EYE TRACKING FOR
CLASSIFICATION OF CVI.
HERE WE LOOKED AT CHILDREN WITH
CVI AS WELL AS CONTROLS AND
LOOKED AT THE OCULAR PARAMETERS
WE CAN EXPORT FROM THE EYE
TRACKING SOFTWARE LIKE FIXATION
LATENCY AND FREQUENCY OF
VELOCITY AND AMPLITUDE AND FROM
THE PARAMETERS THE ONES MOST
DISCRIMINATIVE WERE FIXATION
LATENCY AND FREQUENCY.
SO IF WE LOOK ON THE GRAPH
LATENCY ON THE X AND FREQUENCY
ON THE Y AND YOU CAN SEE THERE'S
ALMOST NO OVERLAP BETWEEN THE
TWO GROUPS AND IF WE SET THE
THRESHOLD OF LATENCY AND
FIXATION AT 5.3 FIXATIONS PER
TRIAL WE'RE ABLE TO CLASSIFY
WITH HIGH ACCURACY OF 94%.
I DIDN'T TALK TOO MUCH ABOUT
FUNCTIONAL VISUAL ASSESSMENTS
BECAUSE WE'LL HEAR ABOUT IT
TODAY AND WE'RE DOING A STUDY
VALIDATING THE CVI RANGE CR OR
FOR CLINICAL RESEARCH PERFORMED
IN PERSON BY A NEURAL
PSYCHOLOGIST AND GRADED AND
WE'RE LOOKING AT THE RELIABILITY
AND LONGITUDINAL CHANGE OVER ONE
YEAR.
NEXT WE HEARD ABOUT FUNCTIONAL
QUESTIONNAIRES AND INVENTORIES
AND THE ADAPTATION OF THE DUTTON
INVENTORY AND HE'S PUT THESE QR
CODES IF ANYONE WANTS TO TAKE A
LOOK AT THE DEMOS THEY'RE
WELCOME TO DO SO.
IT'S A VERSION OF THE HVFQI ON
THE WEB-PLACED PLATFORMS TO LET
THE EXAMINER KNOW WHETHER THEY
HAVE QUESTION.
THERE'S INVENTORY FOR 0 TO 3 AND
4 TO 18 AND ADULTS AND WORKING
ON SHORTER ONES.
A REPORT IS PROVIDED INCLUDING
PERSONALIZED STRATEGIIES BASED N
RESPONSES FROM PARENTS AND
SELF-ADMINISTRATION LINK AND YOU
CAN SEND AN E-MAIL TO THE FAMILY
AND THEY'LL BE WORK ON THAT AT
HOME AND THERE'S A SCREENING
INVENTORY.
THERE'S A BUILT ANALYTICS
PLATFORM AND IT'S USED IN
LONGITUDINAL STUDIES AND
MULTI-CENTER STUDIES AND
CLINICAL AND DIAGNOSTIC AND
SCREENING TOOL.
>> SOME MAY KNOW WE HAD A PAPER
BACK IN 2021 SHOWING THE HFQI
WITH CHILDREN WITH GOOD VISUAL
ACUITY AND SHOWED US CHILDREN
WHO HAD BOTH GOOD AND LOWER
VISUAL ACUITY.
IN THE GRAPH IN BLUE ON THE LEFT
IS THE NEURO TYPICAL OR TYPICAL
DEVELOPING CONTROL AND THE
SPECTRUM INDEX IS LOWER THAN ALL
THE OTHER CVI GROUPS.
THE CVI GROUPS ARE IN ORANGE.
THE DARK ORANGE SHOWS ALL THE
CVI PATIENTS GROUPED TOGETHER.
THE LIGHTER ORANGE IS THE
PATIENTS WITH NEAR NORMAL ACUITY
THE 2021 PAPER AND THE MIDDLE
ORANGE IS THE CVI WITH LOW
VISUAL ACUITY AND INTERESTING NO
DIFFERENCE IN THE HVFD SCORES.
AND THEN WE WERE TOLD ABOUT CVI
AND THE OPTIC NERVE.
WE TALKED ABOUT THE VARIOUS
OPTIC NERVE COMORBIDITIES THAT
CAN OCCUR IN PATIENTS WITH CVI.
THESE ARE TWO OF THE EXAMPLES.
ON THE LEFT IS A PATIENT WITH
HYPOPLASIA WHERE THE NERVE IS
SMALLER AND THE OTHER HAS OPTIC
NERVE CUPPING AND THEY HAVE CP.
HERE THE OPTIC NERVE IS A LITTLE
BIT MORE PALE AND THE OPTIC
NERVE CUP IS ENLARGED.
THERE ARE NO OCULAR
COMORBIDITIES BUT WE FOUND 40%
OF PATIENT HAVE OCULAR
COMORBIDITIES SO IN OUR
DIAGNOSTIC CRITERIA WE NEED TO
ACCOUNT FOR THESE OCULAR COS
ESPECIALLY OPTIC NERVE PROBLEMS.
WE TALKED ABOUT HOW THEY
DIAGNOSE CVI AND IT'S
INSUFFICIENT TO CAUSE THE
SEVERITY OF THE IMPAIRMENT AND
WE HAVE TO LOOK AT THE OPTIC
NERVE AND DETERMINE HOW SEVERE
THE OPTIC ATROPHY IS AND IF IT'S
WORSE WE CONSIDER THERE MAY BE
CVI ON TOP OF THE OPTIC ATROPHY.
.
AS AN EXAMPLE OPTIC ATROPHY WITH
NORMALLY ACTIVE PUPILS WERE NOT
DESCRIBED BECAUSE IF IT'S SEVERE
ENOUGH TO CAUSE LIGHT PERCEPTION
THE INDIVIDUALS WOULD NOT BE
EXPECTED TO REACT WELL AND THOSE
WHO HAVE THIS ALSO HAVE OPTIC
ATROPHY.
NEXT WE TALKED ABOUT CVI AND
RETINAL DISORDERS.
WE TALKED ABOUT THE DISTINCTION
BETWEEN RETINAL AND VISION LOSS
IS AN ARTIFICIAL DICHOTOMY
BECAUSE THE RETINAL IS RARELY
THE VISUAL PORTION WE CAN SEE
BUT WE TALKED ABOUT HAVING THE
TWO TOGETHER COULD HELP OR
HINDER ACCURATE DIAGNOSIS.
SOMETIMES THE CONSTELLATION OF
FEATURES WHERE YOU HAVE THE R
RETR
RETINOPATHY AND IT CAN BE
DIFFICULT TO DISTINGUISH FROM
THE CVI AND CAN BE DIFFICULT TO
DIFFERENTIATE THE TWO DIAGNOSES.
WE TALKED HOW IT'S IMPORTANT TO
ACCOUNT FOR SECONDARY EFFECTS OF
TREATMENT SUFFICIENT AS
RADIATION OR MEDICATION OR
DECREASED COGNATION MAKING IT
DIFFICULT TO PARTICIPATE.
AND NEXT WE TALKED ABOUT
REFLECTIVE ERROR LIKE A GLASSES
PRESCRIPTION.
WE TALKED ABOUT HOW THE
PREVALENCE OF REFRACTIVE ERROR
ARE HIGHER IN CHILDREN WITH CVI.
THE AMERICAN ACADEMY OF
OPHTHALMOLOGY HAVE GUIDELINES
FOR WHEN REFRACTIVE ERRORS ARE
CONSIDERED SIGNIFICANT AND
THERE'S NO SPECIFIC GUIDELINES
FOR CHILDREN WITH CVI AND THINK
THEY MAY HAVE DIFFERENCES
REQUIREMENTS BECAUSE THEY MAY
HAVE DIFFERENT ABILITIES TO
ACCOMMODATE OR TO SEE NEAR
VISION.
THIS IS IMPORTANT BECAUSE
INCORRECTED REFRACTIVE ERROR
DIMINISHES THE QUALITY OF VISION
AND CORRECTION IN REFRACTIVE
ERROR AND VISUAL REHABILITATION
AND DENYING OR DELAYING
CORRECTION MAY CAUSE
OVERDEVELOPMENT.
I'LL TURN IT OVER TO MY
CO-CHAIR.
>> THANK YOU.
WAIT, THERE'S MORE.
WE KNOW CVI IS COMPLEX AND WE
HAVE OTHER CONSIDERATIONS TO
THINK ABOUT.
WE HAD DR. SHAH SPEAKING TO US
ABOUT THE NEUROLOGICAL
COMORBIDITIES ASSOCIATED WITH
CVI.
HUMAN VISUAL DEVELOPMENT SHOWS
US HOW TIMING IS VERY IMPORTANT.
THE EARLY STAGES WE THINK OF
POSTURE CONTROL AND DIFFERENT
ASPECTS OF VISION AND HOW THAT
INFLUENCES OTHER HIGHER FORMS OF
PROCESSING AS WELL.
THIS DRIVES HOME THE IMPORTANCE
OF TIMING AND UNDERSTANDING
WHERE THAT INSULT OR INJURY OR
MALDEVELOPMENT OCCURS HAS AFTER
THAT SEQUELAE WE SHOULD
CONSIDER.
TIMING IS AN IMPORTANT ASPECT.
WE TALKED ABOUT THE DIAGNOSTIC
DILEMMA THERE'S A PRESENTATION
OFTEN OF CVI WITH OTHER NEURO
DEVELOPMENTS LIKE AUTISM
DISORDER AND WE SAW THEM AS
INDEPENDENT BUT POTENTIAL
OVERLAP.
THERE'S BOUNDARIES WE NEED TO BE
ABLE TO QUANTIFY AND SEE WHAT IT
IS AND PRIORITIZE THE PRIMARY
DRIVERS FOR THAT PARTICULAR
INDIVIDUAL WHICH IS A BIG
CHALLENGE WE RECOGNIZE.
WITH DISCUSSED ADULTS WITH CVI
AND THE IMPORTANCE OF
MULTI-DISCIPLINARY CARE.
SHARED WITH US THE STATISTIC
MOST CHILDREN DO NOT RECEIVE
ADEQUATE TRANSITION PLANNING AND
AGE OUT AND WHAT CAN WE DO FOR
THEM AS THEY BECOME ADULTS AND
CHILDREN WITH DEVELOPMENT DELAY
ARE 20% LESS LIKELY TO RECEIVE
TRANSITION PLANNING AND HAVE TO
MAKE SURE THEY DON'T FALL
THROUGH THE GAP.
THERE'S LITTLE RESEARCH IN TERMS
OF SUPPLYING THE TRANSITION AND
THE GREAT RECOMMENDATION IS TO
BEGIN EARLY AND ESTABLISH CARE
FROM THE ADULT PROVIDER PRIOR TO
STOPPING CARE FROM THE PEDIATRIC
DRIVER.
DRIVING HOME THE IDEA THE
COMMUNICATION AND HANDOFF HAS TO
STAY SALIENT AND ROBUST.
MEDICAL NECESSITY IS IMPORTANT.
IT TAKES A DEFINITION WHICH IS
WHY WE WERE IN THE ROOM
YESTERDAY.
SECOND IS DEMONSTRATION OF THE
IMPACT OF CORTICAL VISUAL
IMPAIRMENT AND WE HAVE TO
UNDERSTAND THE DEFINITION AND
ESTABLISH IT AND HAVE TO
QUANTIFY AND DEMONSTRATE THE
IMPACT AS WELL.
THERE WAS AN ASSESSMENT OF CVI
AND A POINT SHARED WITH US THAT
WERE TELLING AND TRAVELED ACROSS
THE WORLD, SOUTH AMERICA AND
MIDDLE EAST AND IN COUNTRIES OF
CONFLICT GETTING CVI DIAGNOSIS
MAY NOT BE THE BIGGEST PRIORITY
IT'S ABOUT SURVIVAL.
IT'S INCREDIBLE THERE'S THE
POSSIBILITY OF STILL BEING ABLE
TO TAKE CARE OF THESE
INDIVIDUALS AND WORKING WITH THE
TOOLS YOU HAVE THERE AND BEING
RESOURCEFUL, ALWAYS LEVERAGING
THE RESOURCES THAT EXIST AND
CREATING SOME FORM OF
SUSTAINABLE INFRASTRUCTURE.
SHE SHARED WITH US IMPORTANT
PUBLICATIONS IN TERMS OF HOW DO
WE BUILD THESE SKILLS AND
INFRASTRUCTURE AND AT THE SAME
TIME THE 10 STEP PROCESS IN THE
INTEREST OF TIME IT'S VERY MUCH
A NEEDS ASSESSMENT.
HOW YOU GO INTO ANY DIFFICULT
SITUATION.
YOU NEED TO ASSESS WHAT'S THERE
AND WHAT YOU HAVE AND WHAT YOU
NEED AND WHAT YOU DON'T HAVE AND
HOW DO YOU BUILD FOR SUCCESS AND
DEMONSTRATE SUCCESS AND BUILD
FOR LONGEVITY AS WELL AND THE
IMPORTANCE OF TEAM WORK.
AND WE LOOKED AT THE IMPACT OF
DIAGNOSTIC TESTING ON
ACCOMMODATION AND TESTING.
HE HAS A WONDERFUL QUOTE IN A
CHAPTER AND I QUOTE THIS A LOT
BECAUSE I THINK IT'S WONDERFUL,
NO PATIENT IS CONSIDERED
UNTESTABLE OR UNCOOPERATIVE.
IT'S THE DOCTOR'S
RESPONSIBILITY.
IT'S ALL ABOUT US HELPING THEM
SET THEM UP FOR SUCCESS.
DR. KRAN TALKED ABOUT THE
IMPORTANCE OF MAKING THE
DIAGNOSE.
IT'S THE FIRST DOMINO THAT HAS
TO FALL AND SUPPORTING THE
FAMILIES IS ULTIMATELY WHAT
WE'RE IN THIS FOR.
VERY OFTEN THE CAREGIVER START
FROM ZERO AND MAY NEED A LOT OF
SUPPORT.
OUR RESPONSIBILITY AS EYE CARE
PROVIDERS OR CLINICIANS OR
PHYSICIANS IS NOT JUST TO MAKE
THE DIAGNOSIS BUT THAT'S THE
BEGINNING.
WE HAVE TO FINISH OUR JOB WELL
AFTER THEY LEAVE OUR CLINIC AS
WELL.
A COUPLE IMPORTANT RECEIVES AND
PROVISIONS SHARED FROM THE
DEPARTMENT OF EDUCATION
PARTICULARLY FOR INDIVIDUAL
WHO'S HAVE NORMAL OR NEAR NORMAL
VISUAL ACUITY BUT ARE AL -- THT
ARE FUNCTIONALLY IMPAIRED AND
SHARED LINK.
AND MYSELF I DISCUSSED THE ROLE
OF NEURAL IMAGING.
ONE IMPORTANT TAKEAWAY IS IT CAN
BE HELPFUL BUT AT THE SAME TIME
I THINK I CAN SPEAK AND SAY IT
SHOULDN'T BE A REQUIRE AND I
SHARED THIS IDEA OF THE NEURO
RADIOLOGY PARADOX AND WHEN WE
SEE STRUCTURAL CHANGES IT'S
DIFFICULT TO CORRELATE THEM WITH
FUNCTIONAL OUTCOMES AS WELL AND
THERE'S A NUMBER OF REASONS TO
GET INTO THAT.
FIRST, ALL THE IMAGES LOOK
DIFFERENT.
HOW DO YOU QUANTIFY THAT, WHAT
ARE YOU MEASURING AND WHAT HAS
CHANGE AND WHAT ISN'T.
THE TECHNIQUE TO DEMONSTRATE THE
CHANGES COULD BE VARIABLE AS
WELL.
THE OUTCOMES THAT YOU WANT TO
CORRELATE WITH, THE FUNCTIONAL
OUTCOMES AND ACUITY ARE VARIOUS.
AND THAT CREATES THIS
MULTI-DIMENSIONAL DATA SET
THAT'S HARD TO WORK WITH.
WE'RE WORKING WITH 25 OR 30 OR
50 PATIENTS DO YOU HAVE THE
STATISTICAL POWER TO SEE
SIGNIFICANT CHANGE?
SOMETHING WE NEED TO CHOOSE
WISELY THE OUTCOMES WE WANT TO
WORK WITH.
THERE'S EXAMPLES WHERE THIS
WORKED OUT.
I DRAW YOUR ATTENTION TO THE
RESULT ON THE RIGHT SIDE.
THIS IS WORK FROM THE UNIVERSITY
OF PIZ AAND IT ALLOWS YOU TO
LOOK AT STRUCTURAL IMAGES AND
COME UP WITH A QUANTIFICATION OF
LESION LOAD AND THE GLOBAL LEVEL
AND LEVEL OF HEMISPHERIC AND USE
THAT AS AN INDEX TO CORRELATE
AGAINST A PARTICULAR FUNCTIONAL
VISION AND YOU CAN DEMONSTRATE
OCULAR MOTOR WITH THE THALAMUS.
THERE'S THE POSSIBILITY OF
CREATING THE BRAIN STRUCTURE AND
FUNCTIONAL RELATIONSHIP.
LASTLY WANT TO SHARE ALMOST OF
ELEMENTS OF THE WORKING
DEFINITION.
THIS SIN PROGRESS AND I WANT TO
HIGHLIGHT HERE SOME TAKEAWAYS
AND THINGS THAT WE THOUGHT WERE
IMPORTANT.
IN TERMS OF A DIAGNOSIS.
WE CONSIDER A SPECTRUM OF VISUAL
IMPAIRMENT CAUSED BY FUNCTIONAL
BRAIN ABNORMALITY AND THINKING
OF FUNCTIONAL VISION ANYTHING
UNDERLYING NEUROLOGICALLY AND
THE DEVELOPMENTAL ASPECT.
DYSFUNCTION IN CVI IS GREATER
THAN EXPECTED WITH COMORBID
CONDITIONS AND VISUAL
ABNORMALITIES MAY MEASURE IN
HIGHER OR LOWER ORDER WITHOUT
EFFERENT OCULAR DISTURBANCES AND
NEED TO UNDERSTAND HOW THE
INFORMATION COMES IN AND ACT ON
IT.
AND WITH OTHER NEURODEVELOPMENT
DISORDER IT'S NOT TO MEAN THE
ISSUES CAN'T BE THERE BUT WE
NEED TO UNDERSTAND THESE ARE
SEPARATE ENTITIES AND NEED TO
UNDERSTAND WHAT THE OVERLAP IS
AND QUANTIFY IT.
AND FINALLY THOUGH THE
NEUROLOGICAL INSULT RESULTING IN
CVI OCCURS IN THE DEVELOPING
BRAIN INDIVIDUALS MAY REQUIRE
LONG TERM SUPPORT EXTENDING TO
ADULTHOOD.
WE THINK OF CVI AS LARGELY A
CHILD OR PEDIATRIC OR INFANT
CONDITION AND THESE KIDS GROW UP
AND HAVE LIVES AND WE HAVE TO BE
THERE AS WELL.
AND THAT WORK IS JUST AS
IMPORTANT.
WITH THAT YOU THANK YOU.
-- WITH THAT I THANK YOU.
>> SO NEXT WE HAVE DR. LANTZY
GIVING US A SUMMARY AND THESE
FROM THE LEMIEUX FAMILY CENTER
IN PITTSBURGH.
>> CROSS OUR FINGERS AND HOPE
THIS PLUGS IN AND IS SEAMLESS.
I WANT TO THANK THE NEI AND THE
CO-CHAIRS FOR INCLUDING ME IN
THE MEETING.
IT'S AN HONOR TO BE HERE AND
WILL BE MORE WONDERFUL IF THE
IMAGES APPEAR.
THIS IS FUN BECAUSE I GET TO
TALK ABOUT THE CONFERENCE WE HAD
TWO WEEKS AGO AND WE INVITED TO
SUBMIT THEIR IDEAS AN OLD
FASHIONED IDEA.
WHAT WOULD YOU LIKE TO PRESENT
AND TO HAVE A COMMITTEE OF
PEOPLE LOOKING AT A DIVERSION
POINT OF VIEW.
WE DID NOT REPRESENT ANY SINGLE
VIEW OF CVI AND TRIED TO REALLY
RESPOND TO WHAT WE FELT PEOPLE
WERE ASKING.
WE REALLY EMBRACED A
MULTI-DISCIPLINARY APPROACH TO
BOTH PRESENTERS AND TO THE
PARTICIPANTS.
PEOPLE CAME WITH THE FIRST OF
WHAT WE HOPE TO HAVE AS A YEARLY
CONFERENCE.
AND ALL THAT DEAL WITH SPECIAL
NEEDS ADOPTION TO THERAPY AND
FOUR HOSPITAL UNITS.
IT'S AN UNUSUAL PLACE IN WHICH
CHILDREN WHO MIGHT OTHERWISE
FALL THROUGH THE CRACKS LAND.
AND PEDIATRIC WAS THERE AS WELL.
PEOPLE CAME FROM A NUMBER OF
PLACES INCLUDING CANADA AND
THAT'S A PARENT'S PICTURE AND AN
OLD LADY BY THE WAY I'M AN
AVERAGE HEIGHT WHITE WOMAN
WEARING A FLORAL DRESS.
IT HAD INDIVIDUALS WITH CVIs
PRESENT AND PROFESSORS, FACULTY,
EDUCATORS, THERAPIST AND OT/PT
SPEECH AND PEOPLE FROM NEI AND
PROGRAM ADMINISTRATORS AND
AGENCY REPRESENTATIVES.
A DIVERSE GROUP.
TOPICS WERE RESEARCH, PRACTICE,
COMMUNITY, INSIGHT.
THERE WAS A KEY NOTE ADDRESS AND
I THINK IT WAS INSIGHTFUL,
POLICY AND ADVOCACY.
SO IF YOUR INTERESTED IN MORE
DETAILS I CAN PROVIDE THEM BUT
WE TRIED TO TOUCH ON NOT HAVING
IT JUST ON ONE THREAD BUT TO
PROVIDE THINGS FOR PEOPLE FROM
DIFFERENT PLACES ALONG THEIR
INTEREST IN CVI CONTINUUM.
MESSAGES FROM ATTENDEES ARE THE
FOLLOWING AND SHARED WITH US.
THEY SAID THERE WERE MORE
PRESENTATIONS THAT HAD DATA THAN
EVER BEFORE.
WHEN WE STARTED THIS PROCESS I
DON'T THINK WE COULD SPELL DATA
BUT PEOPLE ARE COMING TOGETHER
FROM JAGS IT'S NICE TO SEE
EXAMPLES OF PROGRAMS EFFECTIVE
AND WHY ARE THEY SO SCARCE WAS A
COMMENT.
SOME PARENTS LEFT THE MEETING
BUMMED OUT THEIR CHILDREN
WEREN'T HAVING ACCESS TO THE
KINDS OF PROGRAMS PRESENTED.
HOW DO WE CHANGE POLICY SO THAT
ALL STATES RECOGNIZE AND SERVE
STUDENTS WITH CVI AND WHEN
APPROPRIATE IDENTIFY IT AS
EDUCATIONAL AND VISUALLY
IMPAIRED.
HOW DO WE MAKE SURE WE DON'T
MISS ANYONE AND ANYONE WHO HAS A
BRAIN-BASED VISUAL IMPAIRMENT
GETS WHAT THEY NEED?
ANOTHER COMMENT WAS IT WAS
INTERESTING TO HEAR CVI FROM THE
PERSPECTIVE OF PROVIDERS ACROSS
MEDICINE AND THERAPY AND A MAJOR
STEP WE HAD GOVERNMENT
REPRESENTATIVES AS WELL.
TOPICS REQUEST FOR FUTURE
MEETINGS IS HOW TO SUPPORT
INDIVIDUALS AS THEY TRANSITION
TO ADULTHOOD.
WE HEARD THIS A FEW TIMES TODAY.
I THINK WE ALL KNOW THIS IS A
NEED THAT IS -- WE HAVE TO CROSS
THIS THRESHOLD.
RESEARCH AND DATA DRIVEN
OUTCOMES AREN'T NECESSARY.
TO SHOW EXAMPLES IT WAS
INTERESTING THE PICTURE AT THE
BOTTOM LEFT THIS SHOWS A GIRL
LOOKING AT AN iPAD AND IN THAT
PICTURE THIS REPRESENTS
SOMETHING WE'VE DONE WITH ONE OF
THE PRESENTATIONS IN WHICH
THEY'RE COLLECTING WAYS AND DATA
AND SHOWING INTERESTING THINGS
THAT SUBSTANTIATE OR NEGATE WHAT
WE THINK WE'RE SEEING WHEN
STUDENTS LOOK AT SOMETHING
VERSUS WHAT THEY'RE ACTUALLY
ATTENDING TO.
THESE ARE DATA TEACHERS CAN
COLLECT IN THEIR PRACTICE?
OTHER QUESTIONS PEOPLE ASKED FOR
BETTER METHODS TO SORT CVI AND I
DON'T THINK THE AUDIO WILL PLAY
BUT THE PANEL ON THE LEFT SHOWS
A PERSON PARTICIPATING IN AN
ACTIVITY THEY'RE ASKED TO
FIND -- CAN YOU HEAR IT?
>> YELLOW.
>> THIS IS A BOY WITH ASD.
HE'S DOING A TASK IN WHICH HE
LOOKS FOR COLORED BALLS AGAINST
INCREASINGLY COMPLEX
BACKGROUNDS.
HE FINDS THEM NO PROBLEM.
LISTEN TO WHAT HAPPENS WHEN HE'S
ASKED A QUESTION.
THINK ABOUT HIS RECEPTIVE
LANGUAGE.
>> CAN I HAVE THE YELLOW ONE?
MAY I HAVE THE YELLOW ONE?
>> WHERE'S THE YELLOW ONE?
>> NOT SO MUCH.
NOT SO MUCH.
SO IT'S IMPORTANT.
THERE ARE SIGNALS, THERE ARE
WAYS WE CAN BEGIN TO SORT AND
THAT'S WHAT SOME PEOPLE ARE
INTERESTED IN.
THE PANEL ON THE FAR RIGHT SHOWS
A BOY DOING THE SAME TASK WITH
THE DIAGNOSIS OF CVI AND CANNOT
ONLY NOT FIND THE BALLS BUT
THROWS IT OVERBOARD AND WANTS NO
PART OF IT.
THE ONE ON THE PANEL SHOWS THE
BOY ON THE LEFT HOW HE ARRANGED
THE BALL REGARDLESS OF HOW
COMPLEX THE BACKGROUND PATTERN
WAS.
THAT WAS NOT ON OBSTACLE FOR
HIM.
COLOR SORTING THEM BECAUSE HE
WANTED TO.
THAT WAS ONE OF THE THINGS
PEOPLE SAID WE NEED TO LOOK AT
THIS MORE CAREFULLY AND I HEARD
THAT ALREADY THIS MORNING AS
WELL.
ADDITIONAL TOPICS WERE ADVOCACY
FOR LEGAL AND EDUCATIONAL RIGHTS
OF INDIVIDUALS WITH CVI.
TECHNOLOGY RESEARCH FOR
INDIVIDUALS WITH CVI, ACCESS TO
ORIENTATION AND MOBILITY
SERVICES FOR STUDENTS WITH CVI.
IT'S PRETTY SCARCE.
IT SHOULDN'T BE BUT SADLY IT IS.
SUPPORTING THE ADVOCACY OF
INTERVENTIONS AND ACO KCCOMMODAS
AND NEED TO PROVE WHAT WORKS OR
DOESN'T AND CLARIFICATION OF THE
DEFINITIONS OF CVI.
YOU GOT THAT NAILED DOWN
YESTERDAY, RIGHT?
GOOD.
ALSO NEXT YEAR I PRESENT THE
DATA BANK OF ABOUT 1,008
PATIENTS AND I JUST RECEIVED THE
INFORMATION THIS WEEK.
IT'S VERY PRELIMINARY BUT WE'RE
LOOKING AT THINGS ACROSS THE
SPECTRUM OF INFORMATION AND HOPE
TO BE ABLE TO PRESENT NEXT YEAR
BUT RIGHT NOW THE AVERAGE AGE OF
DIAGNOSIS THE MEAN WAS ABOUT 3.2
YEARS OF AGE.
THE MEAN GESTATIONAL AGE WAS 36
WEEKS.
THE MEAN BIRTH WEIGHT WAS 2643
GRAMS.
THE TIME THE CHILD SPENT IN THE
NICU OR PICU WAS SIX WEEKS.
57% WERE MALE AND 43% FEMALE AND
ONGOING SEIZURES AND THE MEDIAN
RANGE SCORE IS 3.
I'LL LOOK FORWARD TO GETTING THE
REST OF THE DATA ANALYZED.
PRIMARY NEUROLOGIC CONDITIONS
WERE NIE AND ALL THE RARE
GENETIC CONDITIONS WHEN CLUMPED
TOGETHER.
ADDITIONAL VISION CONSIDERATIONS
WAS BY FAR THE NUMBER ONE THING
WAS OPTIC NERVE DISORDERS IT'S
NOT FINAL ANALYSIS OF THE DATA.
THE NEXT CONFERENCE -- THIS IS
INCORRECT BECAUSE I GOT A TEXT
THIS MORNING SAYING THEY'RE NOW
LOOKING AT THE FIRST THURSDAY
AND FRIDAY IN OCTOBER 2024 BUT
STAY TUNED.
THANK YOU.
>> THANK YOU VERY MUCH
DR. ROMAN.
OUR NEXT SPEAKER IS NAI DAMATO
AN ACCESS TECHNOLOGY SPECIALIST
DEF BLIND TUTOR, VICTORY AND
CVIER AND WORK AT THE LIGHTHOUSE
FOR THE BLIND IN SAN FRANCISCO
AND WILL SHARE THEIR PERSONAL
PERSPECTIVE OF CVI.
>> GOOD MORNING, EVERYONE.
THIS IS NAI.
IT'S WONDERFUL TO BE HERE AND
GRATEFUL THE NEI IS FUNDING ALL
THE RESEARCH AND UNDERSTANDING.
I WANTED TO SHARE A BIT ABOUT
CVI FROM A PERSONAL PERSPECTIVE.
AS WE ALL KNOW ONE OF THE
IMPORTANT THINGS WITH CVI
DIAGNOSIS IS GETTING THE MEDICAL
HISTORY SO I WANTED TO SHARE A
BIT ABOUT THAT.
I WAS BORN THREE MONTHS
PREMATURE IN SOVIET RUSSIA AND
SPENT MY FIRST YEAR IN AN
INCUBATOR AND TRANSFERRED TO
ORPHANAGE AND HAD UNDIAGNOSED
OCULAR CONDITIONS UNTIL AGE 12
WHEN I FAILED A VISION SCREENING
AND WAS THEN IDENTIFIED AS
HAVING FUNCTION AT THE LEVEL OF
LEGAL BLINDNESS.
BUT MY OCULAR CONDITIONS WERE
RESOLVED LEAVING ME WITH A BRAIN
THAT HAD WIRED ITSELF AROUND 12
YEARS OF A SOUP OF COLORS.
I COULD UNDERSTAND COLORS VERY
WELL BUT HAD ALL THE VISUAL
ILLUSION AND THAT'S WHEN I
STARTED GOING TO VISION THERAPY
FOR TIMES A WEEK.
VISION THERAPY ADDRESSED A LOT
OF THE OCULAR MOTOR ISSUES BUT
WHAT THE TEAM WHO WERE GREAT AT
WHAT THEY KNEW DIDN'T KNOW WAS
THAT MY OCULAR MOTOR ISSUES WERE
THE FINGER POINTING WITH THE
MOON WITH THE MOON BEING CVI.
I WAS ABLE TO IMPROVE SOME
OCULAR MOTOR STUFF THROUGH
CONSCIOUS CONTROL BUT WHEN IT
CAME TO EXERCISES THAT REQUIRED
MULTITASKING THAT'S WHEN THE
WHEELS REALLY STARTED TO FALL
OFF.
SO FOR EXAMPLE I WOULD HAVE TO
LEARN HOW TO CONTROL MY EYE
MUSCLES CONSCIOUSLY BUT I
COULDN'T DO THAT AND WALK AROUND
OR IN FACT I COULDN'T VEEP DO
THAT OR ANYTHING ELSE.
I WOULD HAVE TO FOCUS SO HARD
THAT MANY TIMES DURING VISION
THERAPY MY HEART WOULD START
PALPITATIING BECAUSE I COULDN'T
REMEMBER TO BREATHE.
DURING THAT PERIOD I HAD NEAR
NORMAL ACUITY -- I HAD HEAD
TRAUMA AND I WAS ABLE FOR BLIND
SERVICES BECAUSE I PET THE
DEFINITION OF LEGAL BLINDNESS
AND OPENED UP TO A NEW WORLD OF
BRAILLE, ACCESS TO TECHNOLOGY
AND NAVIGATION SKILLS AND SO ON
AND SO FORTH.
IN RETROSPECT I WISH I HAD HAD
ACCESS TO ALL THOSE SERVICES
WHEN I HAD TYPICAL ACUITY
BECAUSE THE WORLD WAS A
CACOPHONY OF COLOR AND THINGS
LIKE VISUAL MOTION EXPERIENCED
TO LIKE TACTILE SENSATION.
AS I WOULD WALK TOWARD IN SPACE
I FELT I WAS BEING CONSTANTLY
PUNCHED IN THE FACE.
I THINK ONE OF THE TAKEAWAYS --
SORRY, I WANT TO MAKE SURE THE
MIC IS ACCESSIBLE.
ONE OF THE TAKEAWAYS FROM THE
EXPERIENCES I'D LIKE TO SHARE AS
WE MOVE FORWARD IN THIS
WONDERFUL RESEARCH UNDERWAY AND
THAT'S BEEN STARTED BY SO MANY
GREAT PEOPLE MANY OF YOU IN THIS
ROOM IS TO CONSIDER THE
INTERVIEW PROCESS WHENEVER
POSSIBLE FOR CVIs WHO ARE VERBAL
AND WHO HAVE THE ABILITY TO
ARTICULATE OUR INTERNAL
EXPERIENCES.
THIS IS SUCH AN IMPORTANT PART
OF THE PROCESS OF UNDERSTANDING
CVI.
WE NEED EVALUATION OF BEHAVIOR
AND DATA AND SO ON AND ALL THOSE
ARE VERY IMPORTANT BUT WE ALSO
NEED EXPLANATION AND DESCRIPTION
FROM THE INSIDE-OUT SO THAT WE
CAN BE GUIDED ACCURATELY IN HOW
WE INTERPRET THAT DATA.
SO MANY TIMES THROUGHOUT MY LIFE
PEOPLE WOULD LOSE THEIR
OBSERVATIONS AND DRAW INCORRECT
CONCLUSIONS.
INSTEAD OF SAYING -- SORRY, SUCH
AS SAYING YOU MUST HAVE SEEN ME
BECAUSE YOU'RE EYES WERE
POINTING AT ME OR OR ASSUMING --
>> WE'LL THE MICROPHONE.
>> THANK YOU.
SORRY ABOUT THAT.
I HAD MUSCLE MEMORY AND SO ON
AND THE CVI SXUNT THOSE
EXPERIENCING IT CAN BRING WISDOM
TO THE RESEARCH ON TECHNIQUES WE
CAN USE NOT ONLY TO IMPROVE
VISION FOR THOSE WHO WANT IT BUT
TO IMPROVE QUALITY OF LIFE FOR
THOSE OF US WHO DON'T NEED
VISION IN ORDER TO ENJOY THEIR
LIVES.
FOR EXAMPLE, SEMANTIC BUT
BUTTRESSING USING AUDITORY
MEMORY AND TRANSLATION IN MY
HEADS AWAY TO MAKE UP FOR THE
ABILITY TO HOLD ON TO VISUAL
CONCEPTS.
FOR EXAMPLE WHEN I WAS TESTED ON
VISUAL MEMORY I COULDN'T
REMEMBER A TRIANGLE BUT COULD
REMEMBER THE GREEK LETTER DELTA.
I COULDN'T REMEMBER A SQUARE BUT
COULD REMEMBER THE CHINESE
CHARACTER WHICH IS SQUARE SHAPED
AND SO ON.
SO MANY OF US CVIERS BECAUSE OF
OUR EXPERIENCES OF NOT HAVING
BEEN IDENTIFIED SO LONG
ESTABLISHED THESE PROCESSES FOR
MAKING DUE AND THIS CAN BECOME
WISDOM WE BRING INTO THE
RESEARCH AND INTO REHAB
TECHNIQUES FOR CVI MOVING
FORWARD.
MY ULTIMATE DREAM IS IS TO SEE A
NEURAL PROCESSING BASED INCLUDED
IN THE DEFINITION OF LEGAL
BLINDNESS WHICH WILL START WITH
A LOT OF THESE ASSESSMENTS THAT
ARE BEING CREATED NOW AND BEING
REFINED.
SO THAT REGARDLESS OF VISION
FIELD AND ACUITY SERVICES AND
MEDICAL SUPPORT WILL ALSO BE
AVAILABLE TO ALL INDIVIDUALS OF
CVI.
I ALSO WANT TO POINT OUT THIS IS
BENEFICIAL NOT ONLY TO PROVIDE
SS BUT ALSO BECAUSE WHEN WE'RE
UNDIAGNOSED THAT LACK OF SERVICE
ALSO INCREASES ON THE
OPPORTUNITY FOR BEING
SUSCEPTIBLE TO ABUSE AND OTHER
FORMS OF TRAUMA.
THIS IS NOT JUST ABOUT MAKING
SURE THAT BRAILLE LITERACY AND
SO ON ARE AVAILABLE BUT MAKING
SURE THAT CHILDREN WHO ALSO THEN
BECOME ADULTS CAN HAVE SAFER
EXPERIENCES FROM THE VERY
BEGINNING WHERE MEDICAL,
EDUCATIONAL AND COMMUNITY
MEMBERS ARE ALL ON THE SAME TEAM
WITH THOSE INDIVIDUALS WITH CVI.
I'D ALSO LOVE TO SEE US CONTINUE
TO REFINE HOW WE SCALE CVI
ACROSS MULTIPLE DIMENSIONS.
FOR EXAMPLE, AS SOON WHO'S ALSO
AUTISTIC I HAVE SEEN IN THE
AUTISTIC COMMUNITY WE'VE MOVED
BEYOND THE IDEA OF A
ONE-DIMENSIONAL SPECTRUM TO
UNDERSTANDING IT AS DIAL OF A
MIXER WHEREAS BEING LIKE A RADIO
DIAGRAM WHERE DIFFERENT
COMPONENTS ARE ASSESSED AT
DIFFERENT DEGREES.
I'D LIKE TO SEE THAT BE A MODEL
IN HOW WE DEVELOP ASSESSMENT
CRITERIA WHERE IT'S NOT JUST YOU
REACH THIS LEVEL ON CVI BUT YOU
RATE WITO TRULY CAPTURE THE
CHECKERED AND NON-LINEAR
EXPERIENCE AND RESPECT AND HONOR
THE COMPLEXITY OF THIS
NEUROLOGICAL DISABILITY.
I'D ALSO LOVE TO SEE US INCLUDE
NON-VISUAL CRITERIA IN OUR
MEASUREMENT BECAUSE NOT ONLY DO
WE -- DOES OUR BRAIN CHANGE IN
HOW WE PROCESS OR DON'T PROCESS
VISION BUT HOW WE PROCESS
TACTILE AND KINESTHETIC IF
SOMEONE SCORES HIGH AT THE SAME
LEVEL OR BEYOND WHAT IS NOTED IN
OCULAR BLIND POPULATIONS, FOR
EXAMPLE, THAT COULD BE A FLAG
THAT THERE'S A VISUAL PROCESSING
DEFICIT.
SO IT'S ABOUT A HOLISTIC VIEW, A
HEAD TO TOE APPROACH WHICH WILL
ALSO HELP US FIND THEORY
BOUNDARIES LIKE IN AUTISM OCCUR
AS SAID EARLIER.
I WANT TO REITERATE I'M SO
GRATEFUL THAT THIS RESEARCH IS
CONTINUING TO HAPPEN AND THAT WE
ARE AT A PLACE WHERE WE'RE GOING
TO BE CHANGING THE LIVES FOR SO
MANY FAMILIES AND AT THE SAME
TIME WE'RE AT THE CUTTING EDGE
AND THERE'S SO MUCH WORK AHEAD
OF US.
MY HOPE IS AS WE MOVE WITH THE
GOALS WE'LL BE ABLE TO GET THIS
INTO OPTOMETRY SCHOOLS,
OPHTHALMOLOGY SCHOOLS AND VISION
THERAPY SCHOOLS, NEURO OPTOMETRY
AND CVI WILL BE FOLDED IN THIS
CURRICULA AND AS WE BRIDGE THE
FIELDS WELL START TO BRIDGE THE
PARTS OF THE BODY THAT CREATE
THIGHS HOLISTIC AND
MULTI-DIMENSIONAL EXPERIENCES
LEADING US TO FORGET THE PUN, A
STEREO SCOPIC VIEW OF CVI.
>> THANK YOU, NAI.
OUR NEXT SPEAKER IS RACHEL
BENNETT DIRECTOR OF CVI NOW AND
PARENT ADVOCACY AND SUPPORT AT
THE CVI CENTER PERKINS SCHOOL
FOR TE -- THE BLIND AND IS ALSO
A CVI MOM AND WILL SHARE HER
PERSPECTIVE.
>> THANK YOU, NAI.
I'M SO GRATEFUL TO YOU AND WHAT
YOU'RE DOING TO CENTER THE LIVED
EXPERIENCES OF PEOPLE WITH CVI.
I APPRECIATE YOU.
I AM RACHEL BENNET.
I'M A TALL WHITE WOMAN WITH DARK
BROWN HAIR, I BLOW DRIED IT THIS
MORNING AND A DARK GREEN TOP.
I'M HUMBLED AND HONORED TO BE
HERE TODAY TO BE PART OF THIS
WATERSHED MOMENT FOR THE CVI
COMMUNITY.
I'M A CVI PARENT AND DIRECTOR OF
CVI PARENT ADVOCACY SUPPORT AT
THE PERKINS SCHOOL FOR THE
BLIND.
I'LL SHARE MY SON DIAGNOSIS
JOURNEY AND CONSIDERATIONS FOR
THE WORK.
ONE OF THE REASONS WE'RE HERE
TODAY IS BECAUSE OF ALL THE CVI
CAREGIVERS ON THE FRONT LINES
SPEAKING UP, NEVER GIVING UP AND
FIGHTING FOR OUR KID'S RIGHT FOR
LIFE-CHANGING ACCESS.
AND BEFORE I SHARE MY SON'S
MEDICAL EXPERIENCE I WANT TO
INTRODUCE YOU TO HENRY.
HE'S 11 YEARS OLD AND SOMEHOW
FIGURES OUT HOW TO WORK HIS WAY
INTO EVERYBODY'S HEART HE MEETS
AND LOVE RIDING THE
TRANSPORTATION SYSTEM IN BOSTON
AND MY HUSBAND AND I TAKE TURNS
RIDING WITH HIM EVERY WEEKEND
AND KNOWS ALL THE STOPS ON
MULTIPLE LINES AND OUR FAVORITE
THING TO DO WITH THEM BECAUSE WE
GET TO SEE HIM LIVE IN HIS FULL
JOY AND PURPOSE AND PASSION TO
FLEX HIS SKILLS AND TALENTS.
IT'S A CHALLENGE OF A LIFE TIME
TO RAISE A CHILD WITH DISABILITY
IN A SOCIETY THAT CHOOSES NOT TO
BE FULLY ACTIVE AND ABLISM IS
INSIDIOUS.
AT THE CORE OF THE CAREGIVER
EXPERIENCE AT EVERY MOMENT AND
INTERACTION ON EVERY TURN THIS
UNCERTAIN AND SCARY JOURNEY IS
WE HAVE TO PROVE OUR CHILD IS
WORTHY AND ENOUGH.
AND FOR ME AS A DISABILITY
PARENT IT'S THE MOST
HEARTBREAKING THING I HAVE TO DO
WHAT I WANT IT SHARE IS MY SON'S
DIAGNOSIS JOURNEY.
I WON'T TALK ABOUT EVERY DETAIL
BECAUSE THERE'S A LOT OF THEM.
HE WAS MISSED UNTIL HE WAS FIVE
AND A HALF.
HERE'S A TIME LINE OF HIS
DIAGNOSIS JOURNEY.
FOR THE FIRST THREE YEARS OF HIS
LIFE HE WAS NOT MEETING
MILESTONES.
AT THREE MONTHS WE NOTICED HIS
EYES WERE SHAKING AND THIS
STARTED THE YEARS OF NAVIGATING
ALL THE MEDICAL PROVIDERS AND
SPECIALISTS AND MRIs AND NEW
DIAGNOSES ALONG WITH SOME REALLY
DIFFICULT HOSPITAL STAYS AND
E.R. VISITS.
WE WERE LIVING IN MARYLAND CLEZ
TO WHERE WE ARE NOW AT THE TIME
CLOSE TO WHERE WE ARE NOW AND
HENRY CAME TO THE NATIONAL EYE
INSTITUTE AT ONE AND A HALF TO
BE HERE IN THE ROOM 10 YEARS
LATER IS A FULL CIRCLE MOMENT.
HE WAS DIAGNOSED WITH OPTIC
NERVE HYPOPLASIA AND HAS PALE
SMALL OPTIC NERVES AND DELAYED
THE MATURATION AND THE GENE
RESPONSIBLE FOR SENDING NEURONS
TO THEIR FINAL POSITION DURING
FETAL BRAIN DEVELOPMENT.
BETWEEN NEI AND THE REGULAR
OPHTHALMOLOGISTS HE HAD VISITS
TWO TO THREE TIMES PER YEAR.
WE KNEW HE WASN'T USING HIS
VISION NORMALLY.
SOMETHING WASN'T RIGHT.
HE WASN'T VISUALLY CURIOUS OR
INTERESTED IN TOYS, BOOKS AND
STRUGGLED AT THE PLAYGROUND.
HE WAS ALWAYS UPSET AND HAVING
ME
MELTDOWNS AND WE COULDN'T BRING
HIM ANYWHERE AND WE COULDN'T
FIGURE HIM OUT.
HIS REGULAR OPHTHALMOLOGIST SAID
IT'S IN THE HIS VISION.
HE HAS SERIOUS ATTENTION
PROBLEMS.
TO THIS DAY I HAVE NOT FORGIVEN
MYSELF FOR BELIEVING HER.
FOR LETTING HER DISMISS HENRY'S
WORTH TO BE BELIEVED AND WORTH
TO DESERVE CURIOSITY AND FURTHER
EVALUATION.
LUCKILY A SPECIAL EDUCATOR IN
HIS PRESCHOOL PROGRAM NOTICED HE
WASN'T USING HIS VISUAL NORMALLY
AND BROUGHT IN A TBI TO OBSERVE
HIM AND HENRY GOT A BRIEF
ASSESSMENT FROM THE MARYLAND
DEAF/BLIND PROJECT WHERE WE WERE
ENCOURAGED TO TAKE THE REPORT
FOR ASSESSMENT AND I TOOK TIME
TO PROCESS AND THEN DOVE HEAD
FIRST IN THE LITERATURE,
RESEARCH AND ONLINE LEARNING AND
FOUND AN INCREDIBLE CVI PARENT
COMMUNITY AND WAS FINALLY ON THE
PATH TO KNOWING MY SON.
TO KNOWING WHAT ALL THE
BEHAVIORS WERE COMMUNICATING,
HOW HARD IT WAS TO EXIST IN A
WORLD NOT ACCESSIBLE FOR HIM AND
A WORLD WHERE NO ONE KNEW HE WAS
TRULY ON THE BLINDNESS SPECTRUM
AND COULD FINALLY BE THE PARENT
AND ADVOCATE THAT HE NEEDED.
SINCE THEN RECEIVED CHRONIC
HEALTH CONDITIONS.
HE IS JUST ONE PATIENT'S JOURNEY
AND I SHARED A FEW SNIPPET S OF
OTHER DIAGNOSIS JOURNEYS.
MEET LOGAN AND LG.
BOTH HAVE CEREBRAL PALSY AND ONE
MISSED THE OPPORTUNITY TO GET EI
VISION SERVICES AND LG IS A
MIDDLE SCHOOLER AND INCREDIBLE
ADVOCATE.
WE HAVE TO BE AT THE POINT WITH
THE CP DIAGNOSIS WE CAN HAVE A
SCREENER.
JUST PUTTING IT OUT THERE.
EMMA HAS DOWN SYNDROME AND WAS
NOT DIAGNOSED WITH CVI UNTIL 15
1/2 MAINLY DUE TO DIAGNOSTIC
OVERSHADOWING.
I HEARD FROM SO MANY PARENTS
ACROSS THE COUNTRY WHERE THEIR
TRAITS WERE ATTRIBUTED TO OTHER
CONDITIONS AND MANY DIDN'T GET
DIAGNOSIS UNTIL THEIR TEEN AGE
YEARS.
MEET ZEKE HE STRUGGLED WITH
VISUAL ACCESS AND DOCTORS
CONTINUED TO DISMISS HIS MOM'S
CONCERNS.
AND SAVANNAH GOT A DIAGNOSIS AT
SIX MONTHS AND NO OTHER
INFORMATION FROM ANOTHER
PROVIDER AND THIS CHILD HAD CVI
PUT BACK ON THE RADAR AT 4 AND
WE KNOW THERE'S SO MUCH WE CAN
DO TO PROVIDE ACCESS TO LEARNING
AND THE WORLD FOR THE KIDS WITH
CVI.
THE TRUE OF THE STATE OF THE
CAREGIVER EXPERIENCE IS THE
MAJORITY OF CVI CAREGIVERS DON'T
KNOW THEIR CHILD HAS CVI.
ACCORDING TO NEW RESEARCH BY THE
CENTER OF PERKINS USING MEDICAL
CLAIMS DATA WE FOUND LESS THAN
25% OF KIDS WITH CVI IN THE
U.S. ARE DIAGNOSED.
CAREGIVERS HAVE TO TRAVEL LONG
DISTANCES TO FIND MEDICAL
PROVIDERS WHO CAN EVALUATE CVI
AND IT'S HARD FOR CAREGIVERS TO
KNOW WHAT TO DO NEXT.
FOR MANY OF US THIS IS THE FIRST
TIME RAISING A CHILD WITH
DISABILITIES AND OUR KID IS THE
FIRST PERSON WE'RE CLOSE WITH
BLINDNESS AND LOW VISION.
WE NEED HELP.
I WANT TO SHARE WHAT IS WORKING
FOR HENRY NOW.
WE MOVED TO THE BOSTON AREA
SEVERAL YEARS AGO BECAUSE I
LEARNED A HARD WAY THE
EDUCATIONAL SYSTEM HAS A LONG
WAY TO GO TO SUPPORT KIDS WITH
CVI.
I'VE HAD TIME TO DEVELOP MY
KNOWLEDGE AND ADVOCACY AND IT'S
WHAT SO MANY OF US HAVE TO DO.
WE HAVE TO BUILD AN ENTIRE SKILL
SET TO FIGHT FOR OUR KIDS.
HENRY IS CONSISTENT AND THEY
HAVE THE BEST POSSIBLE
ENVIRONMENT FOR HIM AND HE IS
ABLE TO ACCESS HIS LEARNING HE
HAS A STRONG TBI AND USES
BRAILLE AND PRINT AND ON HIS OWN
PATH TO BECOME A READER, WRITER
AND PROBLEM SOLVER.
IT'S NOT EASY BUT HE'S DOING IT.
TO CLOSE, I WANT TO CONSIDER HOW
TO EMPOWER FAMILY.
THE MEDICAL COMMUNITY HOLDS
WEIGHT AND CAN HELP FAMILIES
TAKE THE RIGHT NEXT STEP FOR
THEIR KID.
INCLUDING REFERRAL TO EARLY
INVENTION AND LEGAL BLINDNESS
DETERMINATION AND EVALUATION AND
CVI ASSESSMENTS AND LEARNING THE
ASSESSMENTS BY TEACHING THE
VISUALLY IMPAIRED AND MOBILITY
AND PROVIDING KEY OBSERVATIONS
FROM THE EXAM, SUPPORTS AND
RESOURCE TO LEARN MORE.
PATIENT CARE IS EMPOWERING
CAREGIVERS.
PATIENT CARE IS EMPOWERING
CAREGIVERS.
AS WE CONSIDER THIS CRITICAL
WORK WE HAVE TO INCLUDE THE
EXPERIENCES AND PATIENT
PROFILES.
SO ALL PEOPLE WITH CVI BELIEVED
THE DIAGNOSIS IS A BIG DEAL AND
CAN HAVE A DIRECT IMPACT ON THE
ABILITY OF THE PATIENT TO ACCESS
SERVICES, TOOLS, ADAPTIVE
MATERIALS AND SPECIAL
INTERVENTIONS AND INSTRUCTION
ALL TOO IMPROVE QUALITY OF LIFE.
A QUOTE FROM A CVI PATIENT WHAT
THE DIAGNOSIS MEANT I'LL READ A
BIT.
ON THAT DAY I REALIZED MY CHILD
HAS A LIFE LONG DISABILITY
FOREVER IMPACTING EVERYTHING SHE
DID IN HER DAILY LIFE.
THE DIAGNOSIS CHANGED EVERYTHING
ABOUT OUR ACCESS TO THE WORLD,
EDUCATION AND FUTURE EMPLOYMENT.
EVERY PERSON WITH CVI HAS A
RIGHT TO DIAGNOSIS AND
PROGRAMMING.
IN A FUTURE WHERE THEY DEFINE
THEIR OWN SUCCESS AND LIVE WITH
AGENCY, JOY AND BELONG.
THANK YOU.
THANK YOU ALL IN THE ROOM AND TO
THE NIH FOR STEPPING UP AND
SHOWING THE WORLD OUR KIDS AND
PEOPLE WITH CVI MATTER AND ARE WORTHY.
THANK YOU.
WE CAN HAVE A FIVE-MINUTE BREAK AND COME BACK AT 10:45.
WE'RE SHIFTING GEARS TALKING
ABOUT BUILDING A REGISTRY.
THE NEXT SPEAKER IS DR. STACY
PINELES A PROFESSOR OF
OPHTHALMOLOGY OF UNIVERSITY OF
LOS ANGELES AND SHE IS ONE OF MY
MENTORS AND FAVORITE PEOPLE IN
THE WORLD.
>> THANK YOU.
THANK YOU SO MUCH.
I HAVE ANOTHER SHORT BROWN
HAIRED WOMAN HERE.
I WAS ASKED TO TALK ABOUT THE
IMPACT OF DIAGNOSTIC CRITERIA ON
FUTURE CLINICAL TRIAL.
I DON'T KNOW I CAN FILL 10
MINUTES ON THAT BECAUSE I THINK
WE ALL KNOW THAT WE NEED
DIAGNOSTIC CRITERIA FOR CVI AND
A WANT TO TELL YOU ABOUT PEDIC
DR. CHANG MENTIONED IT HAS A
SPECIAL INTEREST IN CVI TOO.
I WANT EVERYBODY IN THE
COMMUNITY TO BE AWARE OF THE
GROUP AND WORK WE'RE GOING TO BE
DOING WITH CVI AS WELL.
MANY OF YOU IN THE AUDIENCE ARE
FAMILIAR WITH PEDIC.
IT'S A NEI FUNDED GROUP THAT
RUNS CLINICAL TRIALS IN PETE
TRICK OPHTHALMOLOGY IN OPTOMETRY
AND MADE OF OPTOMETRISTS AND
OPHTHALMOLOGISTS WORKING
TOGETHER AND THERE'S ABOUT 180
SITES IN NEW YORK -- NORTH
AMERICA AND WITH OUR RECENT
FUNDING CYCLE WE DECIDED WE
WANTED TO FOCUS ON SOME RARER
DISEASES.
AND WE CREATED GROUPS WITHIN
PEDIG WITH EXPERTS INSIDE AND
OUTSIDE OF PEDIG AND THESE ARE
GROUPS WE CREATED AND I
HIGHLIGHTED NUMBER 6 BECAUSE WE
HAVE A SPECIAL GROUP WORK ON
NEUROOPTO METRIC CONDITIONS SUCH
AS CVI.
I WANT TO SHOW YOU THE LIST OF
PEOPLE WORKING ON PEDIG
NEURO-OPHTHALMOLOGY AND OUR
PLANS FOR CVI ARE GOING TO BE
PARALLEL AND HOPEFULLY
COMPLEMENTARY WITH THE NEI IN
THAT WE'D LIKE TO DO A
PROSPECTIVE STUDY.
A LITTLE DIFFERENT THAN A STUDY
COLLECTING STANDARDIZED DATA
RELATED TO SILVER ACUITY AND
OUTCOMES.
WE'RE WORKING ON DEFINITIONS AND
WE'LL BE SURE TO REPORT BACK AND
COME TO ALL OF YOU FOR IDEAS.
AND JUST TO GET BACK TO THE
ORIGINAL POINT OF THIS TALK
WHICH IS WHY WE NEED
STANDARDIZED DEFINITIONS, WE
KNOW EVIDENCE-BASED HEALTH CARE
IS INFORMED BY RESULT OF OUR CTs
AND WHEN TRIAL OUTCOMES AREN'T
MEASURED CLEARLY IN
PUBLICATIONS, OUR DECISION
MAKING AS DOCTORS AND THERAPISTS
AND PARENTS CAN BE IMPEDED.
SO STANDARDS CAN HELP FACILITATE
THE POOLING OF DATA FROM
DIFFERENT SOURCES.
IF WE HAVE ONE CVI STUDY HERE
AND THERE AND IF WE ALL USE
STANDARDIZED DEFINITIONS AND
OUTCOMES WE CAN POOL OUR DATA
AND CAPITALIZE ON THE SIZE OF
OUR INTEREST GROUPS WORKING
TOGETHER.
AND ALSO BY HARMONIZING
VOCABULARIES AND STANDARDS IT
CAN HELP US ALL SPEAK THE SAME
LANGUAGE.
THESE ARE OBVIOUS THINGS BUT
WANTED TO ANSWER THE QUESTION
ASKED.
STANDARDIZATION CAN IMPROVE
RESEARCH THROUGH IMPROVING
QUALITY AND GIVING US BETTER
INTEGRATION AND REUSABILITY AND
FACILITATION WITH PARTNERS AND
USE SOFTWARE TOOLS WITH
DEFINITIONS IN OUR ELECTRONIC
MEDICAL RECORDS FOR EXAMPLE THEN
WE CAN START TO USE SOFTWARE TO
ANALYZE WHAT WE'RE DOING.
COLLECTION OF CLINICAL RESEARCH
DATA USING PRE-DETERMINED
STANDARDS IS PREFERABLE TO
CONVERTING THINGS POST-HOC IF
YOU WANT TO COLLABORATE IT'S
BETTER TO PREDEFINE WHAT YOU'RE
DOING.
ALL THIS DEVELOPMENT REQUIRES A
COLLABORATIVE EFFORT WHICH WE'RE
DOING HERE TODAY.
AND I'D LIKE TO END JUST BY
SHOWING YOU, I TYPED CVI INTO
PUB MED AND LOOKED AT THE
DEFINITION IN SEVERAL PAPERS.
YOU CAN SEE SOME SIMILARITIES.
THESE ARE BIG WELL ARE RESPECTED
GROUPS BUT ALL ARE DIFFERENT.
SOME HAVE MEDICAL HISTORY.
SOME HAVE SPECIFIC PARTS OF THE
BRAIN.
SOME OF THEM TALK ABOUT SYMPTOMS
LIKE PHOTO PHOBIA.
EVEN FOR THE FIRST FOUR PAPERS I
PULLED UP ABOUT CVI YOU CAN SEE
THERE'S REALLY NO CONSENSUS.
I'M GRATEFUL TO THE NEI AND ALL
OF YOU AND DR. CHANG AND MERABET
AND ALL THE SPEAKERS TODAY WE
CAN TRY TO WORK TOGETHER TO GET
STANDARDIZATION WHICH WILL HELP
ALL THE PATIENTS AND ALL THE
RESEARCHERS WHO ARE INTERESTED
IN THIS DISEASE SO THANK YOU
VERY MUCH.
>> OUR NEXT SPEAKER IS
DR. RAVENSCROFT CHAIR OF THE
CHILDHOOD VISUAL IMPAIRMENT THE
SCOTTISH SENSORY CENTER MORAY
HOUSE SCHOOL OF EDUCATION AND
SPORT UNIVERSITY OF EDINBURGH.
>> I'M TYPICALLY A SHORT FAT
BALD BLOKE IT FROM THE U.K. WITH
A STRANGE BEARD.
I'M TALKING ABOUT A NOTIFICATION
SYSTEM IN SCOTLAND AND I'M
SPEAKING ON BEHALF OF IT BECAUSE
I'M CHAIR OF THE DATA GROUP.
I HAVE ALL THE DATA.
SO TO INTRODUCE THIS AND ITS
RELEVANCY TO REGISTER I'M GOING
TO TALK ABOUT -- OKAY.
I'VE GOT A LOUD VOICE ANYWAY.
WHAT IT TELLS US ABOUT VINCYP
AND WE LOOK AT STUDIES AND 48%
OF THE CHILDREN OF 784 HAD A
DISORDER OF THE BRAIN AND VISUAL
PATHWAYS AND ENERGY PAPER IS
FROM A COLLEAGUE DR. WILLIAMS
WHO LOOKED AT A LARGER STUDY OF
CHILDREN IN PRIMARY SCHOOL AGE
AND HER RESULTS SUGGESTED THAT
ON AVERAGE THERE WOULD BE AT
LEAST ONE AFFECTED CHILD WITH
CVI IN EVERY CLASS OF 30.
SO THESE ARE VARIABLE STUDIES.
THESE ARE DIFFERENT DEFINITIONS
USED ACROSS THE BOARD.
WE NEED ACCURATE DATA.
IF WE'RE GOING TO HELP SUPPORT
AND TARGET ALL THE RESOURCES WE
HAVE WE NEED ACCURATE DATA.
SO IN SCOTLAND WE SET UP A
SYSTEM CALLED VINCYP AND IT'S A
NATIONAL MANAGED CLINICAL
NETWORK.
THERE'S 25 OF THEM IN SCOTLAND.
THEY ARE NHS BASED.
THEY'RE BASED IN MEDICINE AND
REQUIRE WHERE THERE'S A FULL
RANGE OF SPECIALIST CARE NEEDED
AND NOT AVAILABLE IN ALL REGIONS
TO MAKE SURE EVERYONE HAS
EQUITABLE SERVICES ACROSS ALL OF
SCOTLAND.
THE USE FOR VEHICLE FOR CHANGE
AND IMPROVEMENT AND WORKED
ACROSS GROUPS AND WHERE HE
TALKED ABOUT COLLABORATION
NEEDED AND BASICALLY TO HAVE
SPECIFIC TAILORED HEALTH CARE TO
THE NEEDS OF PARENTS, CHILDREN
AND THEIR FAMILIES.
IS THE VINCYP PATHWAY IN CARE.
THEY'RE PDs, OPTOMETRISTS, EARLY
INTERVENTION SERVICES AN
INTERVENTIONS GO TO THE HOSPITAL
CARE TEAM AND DOWN TO
MULTI-AGENCY SYSTEMS AND FROM
THERE THE DATA FROM IT GETS SENT
TO PEDIATRIC SERVICES AND
REHABILITATION SUPPORT AND
PRACTICAL SUPPORT AND THE
AGENCIES ARE THERE TOGETHER AT
THE REVIEW FOR THE CHILD.
WE WOULD EXPECT THE
PEDIATRICIAN, OPHTHALMOLOGIST
AND MULTI-AGENCY REVIEWER TO BE
THERE IN SCOTLAND ALL THERE
PRESENT SPEAKING THE SAME
LANGUAGE COORDINATING TOGETHER.
WE TALKED ABOUT DEFINITIONS.
I THOUGHT OF THE VINCYP
DEFINITION.
BEST CORRECTED VISUAL ACUITY AND
HAVE TO GET THIS RIGHT, 20 OVER
60.
WE'RE NOT USED TO THIS KIND OF
NOTATION IN THE U.K.
SWITCH TO LOGMAR.
IT'S MORE ACCURATE AND PROPER.
JUST SWITCH.
REQUIRES N18 PRINT AND EYE
MOVEMENT DISORDER AND/OR ANY
FORM OF COGNITIVE VISUAL
DYSFUNCTION DUE TO DISORDERS OF
THE BRAIN DEMONSTRATED TO AFFECT
FUNCTION.
THAT'S HOW OUR CVI DEFINITION.
WE DEVELOPED A SPECIFIC CVI
GUIDE IN SCOTLAND IN 2015 TO
IMPROVE THE IDENTIFICATION OF
CVI, TO REDUCE MISSED DIAGNOSIS
AND DEMYSTIFY WHAT CVI IS AND TO
GIVE PROFESSIONALS AND PARENTS
CONFIDENCE SINCE WE KNOW WHAT
WE'RE TALKING ABOUT.
THAT'S A GOOD THING.
THIS IS A COMPLICATED FLOW
DIAGRAM OF THE CVI DIAGNOSTIC
GAP.
I WON'T SPEND TOO LONG ON IT BUT
CAN ENTER OUR HOSPITAL SERVICES
FROM A NEURODEVELOPMENTAL
ASSESSMENT TEAM.
IT'S REALLY IMPORTANT WE INCLUDE
THE PEDIATRICIANS AND
NEUROPEDIATRICIANS AND
NEUROPSYCHOLOGISTS WITH AN
INTERESTING IN VISION IN
ASSESSING OUR CHILDREN WHO REMAY
SUCCESS FROM CVI.
I'M NOT EVEN TRYING TO REDUCE
THAT INTERSECT AT THE BEGINNING
BETWEEN AUTISM, BETWEEN THOSE
WITH OTHER NEURODEVELOPMENT
DISORDERS.
SO WE ARE CLEAR YOU CANNOT GET
THIS AND WE HAVE BE A FOR LOWER
VISUAL FIELD AND LOWER CVI AND
HIGHER ORDER CVI AS WELL.
I PUT THE LINK THERE IF YOU WANT
TO GO INTO DETAIL FROM THAT
CHART.
THIS IS DATA.
WE RELEASE PUBLIC DATA ONCE A
YEAR.
OUR POPULATION IS TINY 6 MILLION
PEOPLE.
SO WE HAVE IN OUR DATA SET 4,022
BUT ON BY PEDIATRICIANS.
THE TOP PRIMARY CONDITION IS
BRAIN BASED VISION IMPAIRMENT BY
FAR THE NUMBER ONE CONDITION
VERIFIED BY YOU IS BRAIN-BASED
CHILDHOOD VISION IMPAIRMENT AND
THE ASSOCIATED COMORBIDITIES
THAT GO WITH THAT.
WE'RE ABLE TO IDENTIFY ALL THE
CHILDREN AND TRACK THEM
THROUGHOUT SCOTLAND AND REFER TO
THE APPROPRIATE SERVICES AND WE
HAVE GENETIC AND DRUG USE AND
THERE'S MANY WAYS WE CAN SLICE
UP OUR DATA.
THE DIFFICULT PART OF GETTING
THE TALK WHICH WAY TO SLICE IT
AND DOING IT QUICKLY FOR THE
GRAPHS THERE.
WE CAN SLICE IT BY GENDER WE
HAVE 58% OF OUR NOTIFIED
CHILDREN AND THEY'RE CALLED
NOTIFIED BECAUSE THE PARENTS
HAVE TO CONCEPT.
-- CONSENT WE ASK FOR CONSENT TO
REGISTRY AND THAT'S AN IMPORTANT
DIFFERENCE.
WE HAVE 1,042 NEVER RECEIVED
CONSENT AND 58% IN THE NEXT
GROUP AND 15% IS WHOLE GLOBE.
SO HUGE.
IT'S HUGE.
SO IF YOU GO BACK TO KATHY'S
PAPER, IF 58% OF ALL CHILDREN
WERE VISION IMPAIRMENT IN
SCOTLAND HAVE BRAIN-BASED VI
THAT MEANS THERE'S AT LEAST 50
WHO REMAIN UNDIAGNOSED JUST BY
DOING DOING THAT.
FOR EVERYONE THERE'S ANOTHER 50.
SO WHILE WE MAY BE OKAY AT
IDENTIFYING THE PER SENT
THERE'LL BE ANOTHER 50 WHO
REMAIN UNDIAGNOSED.
SO HAVING A REGISTER OR
NOTIFICATION SYSTEM IS GREAT
BECAUSE YOU CAN MAP THEM, RIGHT.
YOU CAN MAP THEM AND WHERE ALL
THE CHILDREN ARE IN SCOTT LAND
WITH VISION IMPAIRMENT.
I KNOW WHERE THEY ALL ARE AND
LIVE AND MAKE SURE THAT SERVICES
ARE TARGETED AND DIRECTED TO
THESE CHILDREN.
WE CAN MAP THEM.
WE CAN MAP ALL THE FIELDS WITH
CVI AND BY THE WAY, WE CAN DO
THIS WITH ANY PRIMARY DIAGNOSIS.
WE CAN MAP ANY OF THESE CHILDREN
IN THE PRIMARY DIAGNOSES.
I'M SHOWING THE CVI MAP.
THEY'RE ALL CHILDREN THERE WITH
CVI AND IF WE KNOW WHERE THEY
LIVE THEN THIS GIVES US A
SPECIAL THING WE HAVE IN
SCOTLAND.
THIS GIVES US ACCESS TO SIMD AND
THAT'S MAGIC.
AS THE SCOTTISH INDEX OF
MULTIPLE DEPRIVATION A
SCIENTIFIC METHODOLOGY BY D
DECILES OR SEX AND WE SEE CVI
AND SIMD AND CHILDREN ARE MORE
LIKELY TO COME FROM THE MORE
DEPRIVED AREAS OF SCOTLAND.
THIS IS A STATISTICAL FINDING
HERE.
IF YOU LIVE IN THE MOST DEPRIVED
AREAS OF SCOTLAND, YOU'RE MORE
LIKELY TO FIND CHILDREN WITH
CVI.
FOR THE NERDS WHO LIKE THEIR
GRAPHS, THIS IS A CORRELATION
GRAPH AND SEE ALL THE POINTS
THERE AND IF WE DO A STRONG
CORRELATION, THE CORRELATION IS
24.
CVI IS FOUND MORE IN THE MOST
DEPRIVED AREAS OF SCOTLAND BASED
ON THE PERCENTAGE OF QUINTILES.
WE'RE FINDING THIS ALL OVER THE
PLACE.
WE'RE ASKING ALL OF OUR
COLLEAGUES TO DO THIS SIMILAR
KIND OF ANALYSIS AND FINDING
THIS REPLICATED QUITE A LOT.
AND ANOTHER THING WE CAN DO
AGAIN IS SLIEFG UP THE DATA WE
WANTED TO LOOK AT ALL OF OUR
CHILDREN WITH BRAIN-BASED CVI
AND LOOK AT ACUITY SCORES.
THIS IS A CHART OF CHILDREN
BASED ON THE ETIOLOGY AND ACUITY
AND IF YOU LOOK AT PREMATURITY
YOU CAN SEE MOST CHILDREN HAVE
PREMATURITY AND CVI THESE ARE
THE WORLD HEALTH DEFINITIONS OF
ACUITY AND HAVE VISUAL
IMPAIRMENT.
THERE'S FEW CHILDREN WITH TOTAL
OR NEAR TOTAL BLINDNESS.
THERE ARE FEW BUT NOT SO MUCH
AND MANY MANY OF THE CHILDREN
WITH TERM BIRTH HYPOXIA HAVE FEW
VISUAL ACUITY LOSS AT ALL.
WE'RE ABLE TO COLLECT THE DATA
IN THE STANDARDIZED WAY ACROSS
SCOTLAND AND TRAIN PEDIATRICIANS
AND OPHTHALMOLOGISTS ON THE
ASSESSMENTS AND TESTS WE USE.
QUICK SUMMARY.
AND MORE COMMON IN BOYS.
MANY CHILDREN ARE FROM THE
POORER AREAS OF SCOTLAND, HAVE
HEALTH ISSUES AND SIGNIFICANT
VISION IMPAIRMENT IS RARE AND
ROP IS UNCOMMON IN SCOTLAND.
IT'S USEFUL AND SECURE.
IT'S CENTRALLY HELD AND PART OF
THE NHS SYSTEM AND NOT PART OF A
RESEARCH TEAM AND NOT HELD IN MY
LAB OR ANYTHING LIKE THAT.
IT'S HELD ON THE NIH SYSTEMS AND
THINK WE NOW HAVE REGISTERED OR
NOTIFIED 65% OF ALL THE CHILDREN
WITH VISION IMPAIRMENT IN
SCOTLAND.
THANK YOU VERY MUCH.
>> THANK YOU FOR SHARING YOUR
EXPERTISE.
WE HAVE A LOT TO LEARN.
WE HAVE A JOINT PRESENTATION IF
I'M NOT MISTAKEN FROM ASSOCIATE
DIRECTOR OFFICE OF DATA SCIENCES
AND HEALTH INFORMATICS WITH THE
NATIONAL EYE INSTITUTE AND ERICA
NELSON WILL START US OFF FROM
THE NATIONAL EYE INSTITUTE.
KERRY AND ERIKA PLEASE.
.
>> I'M ERIKA NELSON WITHIN THE
NATIONAL EYE INSTITUTE OFFICE OF
DATA SCIENCE AND HEALTH
INFORMATICS.
I'M PLEASED TO BE HERE TO SHARE
THE GOAL OF THE REGISTRY.
I'M GOING TO BE HELPING TO GET
THE CVI REGISTRY UP AND RUNNING
AND THEN MANAGING THE DAY IT DAY
OPERATIONS OF THE CVI REGISTRY.
AND WE PROVIDE A HUB FOR NEW
PROGRAMS IN DATA COLLECTION,
DATA SHARING AND DATA
INTEROPERABILITY.
AND OUR GOALS AS AN OFFICE ARE
TO ACCELERATE SCIENTIFIC
DISCOVERY, FOSTER COLLABORATIVE
RESEARCH AND ULTIMATELY IMPROVE
PUBLIC HEALTH THROUGH THE
APPLICATION OF SCIENTIFIC DATA
AND KNOWLEDGE MANAGEMENT IN THE
EYE HEALTH SCIENCES.
SO WHAT IS A REGISTRY.
IT COULD BE MANY DIFFERENT
THINGS.
I PROVIDED A DEFINITION HERE.
AN ORGANIZED SYSTEM FOR THE
COLLECTION, STORAGE, RETRIEVAL,
ANALYSIS AND DISSEMINATION OF
INFORMATION ON PERSONS WHO HAVE
A PARTICULAR DISEASE OR
CONDITION.
AND A REGISTRY CAN BE AS SIMPLE
AS A LIST OF PEOPLE TO CONTACT
IN THE FUTURE.
IT CAN BE A SYSTEM FOR TRACKING
NATURAL HISTORY.
IT CAN STUDY SAFETY OR HARM AND
DRUGS OR CAN BE ANY COMBINATION
OF THESE THINGS I'VE LISTED AS
WELL AS SOME OTHER THINGS THAT
AREN'T LISTED THERE.
SO AS FAR AS WHY A REGISTRY MAY
BE IMPORTANT AND WHAT A REGISTRY
CAN ACCOMPLISH, AGAIN IT CAN BE
USED FOR A WIDE VARIETY OF
THINGS.
WE MIGHT BE USING IT TO COLLECT
SOME BASELINE DATA ABOUT A
DISEASE OR CONDITION, DETERMINE
PREVALENCE.
IT MIGHT BE USED FOR
FACILITATING RESEARCH AND
COLLABORATION.
AND I INCLUDED A FEW WELL-KNOWN
REGISTRIES IN THE EYE RESEARCH
SPACE UP THERE.
LOOK THE AMERICAN ACADEMY OF
OPHTHALMOLOGY IRIS REGISTRY AND
RETINA TRACKER REGISTRY AND
NATIONAL EYE INSTITUTE EYE GENE
REGISTRY FOR INHERITED RARE EYE
CONDITIONS.
AND I WANTED TO SHARE ABOUT THE
EXISTING NEI REGISTRY SO WE CAN
LOOK AT IT THE SUCCESSES AND
TAKE LESSONS WITH US INTO THE
CVI REGISTRY BUILDING PROCESS.
SO THE NEI REGISTRY IS A
PARTICIPANT CONTACT REGISTRY
COUPLED TO A DATABASE WITH
INFORMATION, FAMILY HISTORY AND
GENETIC AND IMAGING DATA.
AND THE RESOURCES ALSO COUPLED
WITH A BIO BANK OF PARTICIPANT
DNA SAMPLES AND RESEARCHERS CAN
ACCESS IT VIA A SMALLER REVIEW
COMMITTEE AND RESEARCHERS CAN
REQUEST THE DATA COORDINATING
CENTER REACH OUT TO PARTICIPANTS
AGAIN AND LET THEM KNOW ABOUT
ADDITIONAL STUDIES THEY MAY BE
ELIGIBLE FOR.
AGAIN, WANTED TO SHARE SOME
SUCCESSES TO SEE WHY A REGISTRY
IS GOING TO BE VERY HELPFUL FOR
THE CVI COMMUNITY.
SO EYE GENE IS A RARE DISEASE
REGISTRY BUT WE FOUND STRENGTH
IN NUMBERS BY INCLUDING 38
DIAGNOSES AND CATEGORIES WITHIN
THE DATABASE.
THE MODEL HAS BEEN SUCCESSFUL
RESULTING IN ALMOST 200
PUBLICATIONS OVER 30 SECONDARY
RESEARCH STUDIES AND SUCCESSFUL
RECRUITMENT FOR A HANDFUL OF
OTHER NATURAL HISTORY AND
THERAPEUTIC TRIALS.
HOPEFULLY THOSE ARE SOME OF THE
THINGS WE CAN LOOK FORWARD TO
WITH OUR CVI REGISTRY.
I'M GOING TO HAND IT OVER TO
KERRY NOW TO TALK ABOUT OUR DATA
COLLECTION AND SHARING SYSTEM.
>> THANK YOU, EVERYONE.
JUST TO SET THE STAGE.
I'M GOING TO BE DOING A LITTLE
BIT OF A DEEPER DIVE TO THE
TECHNICAL COMPONENTS OF THE
REGISTRY.
I'M A WHITE FEMALE WITH BLONDISH
BROWNISH HAIR.
IT'S ALWAYS A DEBATE AND EIGHT
OF GRAY SEEPING IN.
I'M A GOOD FOOT SHORTER THAN
ERIKA SO IT'S FITTING I TAKE YOU
ON A LOWER LEVEL DEEPER DIVE.
A COUPLE PERSONAL WORDS FIRST,
REFLECTIONS I'VE HAD AND I'VE
HAD THE GREAT PLEASURE OF
MEETING A LOT OF FOLKS IN THE
COMMUNITY IN PITTSBURGH A FEW
WEEKS AGO AND THIS HAS BEEN A
CRASH COURSE FOR ME IN CVI.
AS YOU CAN SEE, I'VE BEEN
RUNNING THE EYE GENE PROGRAM
SINCE 2008 WHEN I JOINED NEI AND
HAVE BEEN STEEPED IN RARE
DISEASE RESEARCH.
A LOT OF THAT RETINA DISEASE
RESEARCH AND I CAN JUST SAY IT'S
BEEN AN AMAZING EXPERIENCE.
I LOVE WORKING FOR THE NEI SO
MUCH AND THE EYE GENE PROJECT
BECAUSE I GOT TO HEAR THE
PERSONAL STORIES.
I ENJOY ALL THOSE INTERACTIONS
AND HEARING ABOUT YOUR
EXPERIENCES AND THAT'S AN
IMPORTANT PART FOR US WHEN WE'RE
THINKING ABOUT THE REGISTRY.
I WANT TO SAY THANK YOU FOR
BEING OPEN AND SHARING THAT.
I ALSO WANT -- A COUPLE THINGS
OVER THE PAST OR YESTERDAY AND
TODAY.
I LOVE THIS QUOTE THAT WE'VE
SAID A DIAGNOSIS CAN BE LIFE
AFFIRMING.
THE OPEN DOOR TO RESOURCES.
IT WAS GRASSROOTS AND
PARTICIPANTS OF THE REGISTRY
SHOWING WITH OTHER FAMILIES.
OTHER PEOPLE HAVING THAT SAME
LIVED EXPERIENCE ABOUT WHY THEY
WANTED TO BE PART OF THAT
REGISTRY.
AND I HOPE TO SEE THAT SAME
INITIATIVE TAKE HOLD WITH THIS
PROJECT AND SO JUST WANTED TO
SAY WE ARE SUPER EXCITED.
I'M HAPPY TO HAVE ERIKA ON MY
TEAM.
SHE'S AN AMAZING SUPER STAR AND
THE TWO OF US ARE DEDICATED TO
SEEING THIS BE A SUCCESS.
THE NITTY-GRITTY.
THE REGISTRY PLATFORM IS WHAT
I'LL SHARE ABOUT.
WE AT THE NEI USED THE BIO
MEDICAL RESEARCH BIO INFORMATICS
SYSTEM AN END TO END BIOMEDICAL
WHERE WE CAN COLLECT THE DATA
USING CONTROLLED STANDARD DATA
DICTIONARIES, ELECTRONIC CASE
REPORT FORMS AND THAT DATA IS
VALIDATED WITHIN THE SYSTEM TO
MAKE SURE THINGS MAKE SENSE.
AND ALSO IS AVAILABLE FOR
RESEARCH USE AT LIKE 24 HOURS
LATER AS SOON AS IT HITS THE
DATABASE IT CAN BE AVAILABLE FOR
RESEARCH USE.
THIS IS A SYSTEM THAT WAS
UNUSUA
INITIALLY FUNDED BY THE NATIONAL
EYE INSTITUTE TO STUDY TRAUMATIC
BRAIN INJURY.
WE HAVE A NICE COLLABORATION
WITH THOSE FOLKS AND HOPEFULLY
WE CAN HAVE MORE COLLABORATIVE
EFFORTS THERE.
THERE'S A LOT OF INFORMATION IN
THE TBI REGISTRY AND INFORMATIC
SYSTEM.
I THINK YOU'LL SEE HOW THAT HAS
CHANGED THE LANDSCAPE OF DOING
TBI RESEARCH.
IT'S ALSO USED BY PARKINSON'S,
EYE GENE AT THE NEI NURSING AND
CENTER FOR NEUROSCIENCE AND
REGENERATIVE MEDICINE.
SO GOING EVEN FURTHER IN, YOU
COULD SEE THE PLATFORM ITSELF
HAS A REALLY NICE USER
INTERFACE.
SO, THERE'S A COUPLE THINGS.
THE BRICKS.
AND ONE IS WHERE WE COLLECTOR
CREATE THE DATA COLLECTION
FORUMS AND PARTICIPANTS,
CLINICIANS, ANYONE CAN ENTER
DATA.
I'M SURE A LOT OF US RESEARCHERS
ARE FAMILIAR WITH RED CAP.
IT'S ESSENTIALLY RED CAP BUT
FEEDS IN OUR DATABASE WITHOUT
HAVING TO EXPORT AND IMPORT IN
THE SYSTEM.
IT'S A MORE CONCISE LESS STEPS
INVOLVED.
I CAN CONTROL THE DATA REGISTRY
AND CONTROL ACCESS TO WHO GETS
WHAT DATA AND WHICH PROJECTS ARE
APPROVED.
ON THE CONSENT BY CONSENT LEVEL
AND PARTICIPANT LEVEL.
THERE'S A LOT OF CONTROLS HERE
WHERE WE CAN MAKE SURE THE
CONSENT REQUIREMENTS AND THE
PARTICIPANT GIVES EFFICIENTLY
MANAGED AND PEOPLE DON'T SEE
WHAT THEY DON'T WANT THEM TO
SEE.
THERE'S A QUERY TOOL THE MEAT
AND POTATOES OF THE ASPECT AND
MEDICINE WHICH IS A WAY FOR US
TO CAPTURE THAT SECONDARY
RESEARCH AND FEED THAT BACK IN
THE SYSTEM.
WE'RE USING THIS PLATFORM FOR
THE DATA CAPTURE, FOR THE DATA
STORAGE AND LATER FOR OTHER
PEOPLE TO DO ANALYSIS.
THE NEI INTENTION WITH ALL OF
OUR STUDIES THROUGH OUR OFFICE
I'M AN EVANGELIST OF DATA
SHARING.
EVERYTHING YOU DO IS MEANT TO
HAVE RESEARCH USE TO THE
BROADEST AUDIENCE POSSIBLE.
WITHIN THOSE CONFINES AND
GOVERNANCE PROCESS PEOPLE WHO
USE THE TOOL TO CREATE SECONDARY
RESEARCH USE AND WILL BE ASKED
TO FEED THAT BACK INTO THE
SYSTEM INTO THE NETWORK SO WE
CAN CONTINUE TO BUILD KNOWLEDGE
AND THERE'S STRENGTH IN NUMBERS.
THERE'S SO MANY RESEARCH
QUESTIONS FLOATED IN THE LAST
TWO DAYS.
WE NEED AS MANY HANDS ON DECK AS
POSSIBLE TO LOOK THROUGH THE
DATA AND TELL US WHAT WE FIND.
THAT'S THE INTENTION HERE FOR
BRICS.
AND A LOT OF THE REGISTRY IS
YESTERDAY TO BE DETERMINED.
MAYBE WE WANT MORE
ELECTROPHYSIOLOGIC DATA.
WE CAN COLLECT THAT AND MAYBE
FROM TEACHERS.
WE HEARD A LOT IN PITTSBURGH
FROM THE SPEECH LANGUAGE
PATHOLOGISTS AND THAT'S A
COMPONENT WE CAN ADD AS WELL.
WE CREATE DATA DICTIONARIES.
THESE ARE CONTROLLED
TERMINOLOGIES AND LANGUAGES.
WE TRY TO MAP THEM TO THINGS
THAT EXIST IN THE WORLD AND WE'D
LOVE IT HEAR FROM ALL THE
RESEARCHERS WHO ARE ALREADY
DOING THIS WORK.
WE WANT TO MAKE SURE WHATEVER
QUESTION WE'RE ASKING PEOPLE OR
VALUE THEY ENTER, IT'S
STANDARDIZED AND MACHINE
READABLE BECAUSE IN THE END
WE'LL BE COMPARING ACROSS A
LARGE COHORT OF PEOPLE AND
PERHAPS EVEN COMBINING THIS WITH
OTHER RESOURCES LIKE THE TBI
REGISTRY.
WE WANT TO MAKE SURE THE DATA IS
STRUCTURED AND ANALYZED BY
COMPUTERS EFFECTIVELY.
THE DATA REPOSITORY -- THIS IS
SHOWING THE PROJECTS CAN BE
COMBINED.
IN THE SCREEN SHOT WHICH IS
SMALL AND HARD TO READ, I
APOLOGIZE FOR THAT.
WE HAVE FOUR STUDIES.
THE EYE GENE PROJECT, A LASIK
EYE SURGERY PATIENT REPORTED
OUTCOMES PROJECT AND A STUDY FOR
AGE-RELATED MACULAR
DEGENERATION.
THEY ALL LIVE IN THE SAME ECO
SYSTEM.
IF SOMEONE HAD A QUESTION THAT
COULD BE APPLIED TO ALL THE
PROJECT THEY COULD POTENTIALLY
ACCESS THEM ACROSS THE PROJECTS.
IT SHOWS HOW BY USING A
CONSISTENT FRAMEWORK THEY CAN DO
POWERFUL RESEARCH.
IF ANYONE IS TECHNICALLY SAVORY
WE HAVE THE QUERY TOOL.
IT'S NICE AND USER FRIENDLY.
ANYONE CAN LOOK AT THE DATA.
THERE'S EASY DRAG AND DROP TOOLS
YOU DON'T NEED TO KNOW HOW TO
CODE IN PYTHON OR E.R.
WE DEVELOPED APIs TO PEOPLE CAN
CONNECT TO NET BOOKS AND DO HIGH
THROUGHPUT PROCESSING ON A MORE
TECHNICAL LEVEL BUT YOU DON'T
NEED TO.
SO THIS IS A VERY POWERFUL
FLEXIBLE TOOL FOR ALL USERS.
WE'LL BE SUMMARIZING AND WE HAVE
LIVE DASH BOARDSES.
IT'S PROBABLY ACCESSIBLE ON A
SUMMARY LEVEL TO THE PUBLIC
WITHIN 24 HOURS OF DATA
COLLECTION.
I'LL TURN IT BACK TO ERIKA AND
TAKE QUESTIONS AT THE END.
THANK YOU, KERRY.
WE'VE DISCUSSED THE IMPORTANCE
AND USES OF REGISTRY KERRY
TALKED ABOUT BRICS AND AFTER THE
LIED WE'LL JUMP INTO A
DISCUSSION WITH EVERYONE HERE TO
SEE WHERE WE HAVE GAP IN
KNOWLEDGE AND I'LL WORK WITH
FOLKS TO PUT TOGETHER A STEERING
COMMITTEE FOR THE CVI REGISTRY.
IT'S GOING TO INCLUDE SUBJECT
MATTER EXPERTS TO INCLUDE
RESEARCHERS, PATIENT ADVOCATES,
EDUCATORS WOULD WORK WITH PEOPLE
WITH CVI AND CLINICIANS AND
PATIENTS WITH CVI AND THEN THIS
GROUP OF PEOPLE IS GOING TO
PROVIDE US WITH EXPERTISE AND
INPUT ON THE PROJECT SO THAT WE
CAN MOVE FORWARD WITH MANY
DIFFERENT PERSPECTIVES AND
IDEAS.
THEN WITH THE STEERING COMMITTEE
AND WORKING GROUP AT THE
NATIONAL EYE INSTITUTE WE'RE
GOING TO IDENTIFY HOW WE'RE
GOING TO ENROLL PATIENTS INTO
THE TRIAL AND RECRUIT THEM AND
WE'RE GOING TO WRITE AND SUBMIT
RESEARCH PROTOCOL TO THE
INSTITUTIONAL REVIEW BOARD AND
THAT BOARD REVIEWS ALL RESEARCH
PROJECTS AND APPROVES THEM.
SO ONCE WE HAVE APPROVAL FROM
THE IRB, WE'LL BE ABLE TO BEGIN
ENROLLING PARTICIPANTS.
SO WITH THAT I WANTED TO GET
INTO SOME DISCUSSION.
THE COMMON QUESTION IS THE
COMMON CONDITIONS AND DIAGNOSES
WANT TO HEAR FROM YOU ALL WHAT'S
IMPORTANT LIKE BIG PICTURE
QUESTI
QUESTIONS AND WHAT THE REGISTRY
SHOULD EXPLORE SO FEEL FREE TO
COME TO THE MICROPHONE AND COME
ONLINE AND I'LL BE TAKING NOTES.
>> THANK YOU, ERIKA AND KERRY.
IT'S WONDERFUL WE'RE ON TIME TO
HAVE TIME FOR THE DISCUSSION
BECAUSE THE REGISTRY IS THE BIG
DELIVERABLE OF THE EFFORT.
>> THANK YOU.
I'M RALPH NITKEN FROM THE NIH
COMING FROM THE LARGER
REHABILITATIONEST EFFORT --
REHABILITATION EFFORT WITH LISA
CREWS AND ONE THING THAT MADE AN
INTERPRETATION IS HOW LARGELY
UNDIAGNOSED SYSTEMS GO.
IF MEETINGS LIKE THIS THAT TRY
TO RAISE AWARENESS ARE GOING TO
BE EFFECTIVE HOPEFULLY THESE
KIDS THAT GET DIAGNOSED EARLIER
AND CHANGE THE RECRUITMENT
STRATEGIES INSTEAD OF HAVING
SOME KID HAVING PROBLEMS IN
SCHOOL AND ADOLESCENT WILL BE
GETTING KIDS AT THE CEREBRAL
PALSY END OF THINGS AND
HELPFULLY KIDS HAVE TREATMENTS
AND SUPPORT EARLIER WHICH WOULD
CHANGE THE THERAPEUTIC
TRAJECTORY.
THAT MIGHT BE A BIG CHANGE AND
THIRD OF ALL IT SOUNDS LIKE
THERE'S AN OVERLAP IN OTHER
CONDITIONS SO THAT SOME OF THESE
KIDS OR FAMILIES MAY BE IN OTHER
FAMILIES.
IF YOU CAN CROSS CONNECT THAT
MAY HELP TOO SO I WANTED TO
THROW OUT THOSE IDEAS.
>> CONNECTING IS AN IMPORTANT
POINT AND I CAN GOOD ON FOR
HOURS ABOUT THE TECHNICAL
CAPABILITIES AND NO ONE WANTS TO
HEAR THAT BUT WE HAVE IN THE
SYSTEM A GLOBAL UNIQUE
IDENTIFICATION SYSTEM AND
ESSENTIA
ESSENTIALLY WE CAN UTILIZE IT
FOR THE PURPOSE OF CONNECTING.
IT USES LIKE A DISCONNECTED
SERVER TO COLLECT HIGH-LEVEL
PATIENT IDENTIFICATION
INFORMATION SUCH AS YOUR FULL
NAME, LIKE WHERE YOUR PARENTS
ARE BORN AND CREATE A HASH
RESEARCH I.D. IF SOMEONE IS
USING THE SAME SERVER WE CAN USE
THAT AND RECORD LINKAGE THAT IS
GOING TO BE INCORPORATED INTO
THE PROCESS.
>> I'M FROM SEATTLE AND
REPRESENTING CEREBRAL PALSY
RESEARCH NETWORK AND AS SOMEONE
INVOLVED WITH INSTITUTION
INVOLVED WITH CYSTIC FIBROSIS TO
SPINA BIFIDA AND TO DOVETAIL TO
WHAT RALPH SAID IF YOU WANT TO
START EARLY DETECTION OF CVI AND
AWARENESS AND THIS MAY BE
BROADER THAN THE REGISTRY
QUESTIONS WE NEED TO BE IN THE
TRENCHES WITH WHO COULD
POTENTIALLY BE GETTING THE KIDS
TO A CVI DIAGNOSIS OR INFANTS
AFTER TALKING TO HI MI COLLEAGUE
IN THE STATE OF WASHINGTON AND
THE PEDIATRICIANS.
HOW ARE THEY BEING TRAINED TO
SEPARATE OUT IN CVI.
IS THIS GETTING THE INFORMATION
INTO THE RIGHT PART OF THE
BRAIN?
MY APPOINTMENT'S IN P.T. BUT IN
DEVELOPMENT MEDICINE.
WHEN I THINK ABOUT COMORBID
CHALLENGES THE DEVELOPMENT
PEDIATRICIANS ARE SCREENING FOR
I THINK OF THAT SUB SPECIALTY OR
GETTING THEM TO AN
OPHTHALMOLOGIST OR WHATEVER.
ANOTHER CAVEAT THE CP REGISTRY
THE CEREBRAL PALSY RESEARCH
NETWORK AND OTHER REGISTRIES, WE
DO UNCONSENTED DATA COLLECTION
OF CLINICAL CARE.
WE DON'T HAVE THAT STEP OF
CONSENT IN THERE BECAUSE IT'S A
LARGE RETROSPECTIVE CHART
REVIEW.
WE COLLECTED WHAT'S ALWAYS BEING
COLLECTED IN CLINICAL CARE BUT
THAT'S DEPENDENT ON HAVING A
CLASSIFICATION SYSTEM FOR THE
DIAGNOSIS.
WE'RE FORTUNATE ENOUGH IN
CEREBRAL PALSY.
WE HAVE MULTIPLE CLASSIFICATIONS
SYSTEMS THAT ARE ALREADY
VALIDATED GROSS MOTOR, FINE
MOTOR, FEEDING COMMUNICATION AND
HOW DO WE KNOW WHAT CLASS AND
WHAT ALSO DO THEY HAVE THAT'S
THE COMORBIDITY OF THE
FUNCTIONAL OUTCOME OF THE FAMILY
WITH CVI IS EXPERIENCE.
THANK YOU.
THIS IS AMAZING.
YOU GUYS ARE AWESOME.
>> I THINK WE HAVE A LOT OF
LESSONS LEARNED FROM THE CVI
COMMUNITY AND WILL BE
COLLABORATING AND GETTING INPUT
FROM THE COMMUNITY.
AS FAR AS EARLY DIAGNOSIS I'M
HOPEFUL THERE WERE DEFINITION
DISSEMINATED AND WILL HELP TO
BRING AWARENESS TO PROVIDERS SO
THE EARLY DIAGNOSIS CAN BE
ADDRESSED.
>> THIS GOES BACK TO WHAT JOHN
PRESENTED.
I'M AFRAID FOR UNDER REPRESENTED
GROUPS MOST THE FAMILY ADVOCACY
THAT HAS GONE ON IS NOT
REPRESENTATIVE OF A LOT OF
CHILDREN WITH CVI AND THE
SCOTLAND AND BRITISH LITERATURE
WE QUOTED ABOUT CVI.
AND I DON'T THINK THAT JUST
HAPPENS IN SCOTLAND AND ENGLAND.
I THINK IT HAPPENS EVERYWHERE.
I KNOW YOU'RE GOING TO DO THAT
BECAUSE YOU WILL.
YOU'RE GOOD.
YOU'RE GOING TO DO THAT BUT I
WANT US TO ALL BE THINKING ABOUT
THAT AND CAPTURE.
>> THE BIGGEST CHALLENGE I SEE
FOR THE REGISTRY IS CAPTURING
THE RIGHT POPULATION.
THAT NOT ONLY IS MEETING THEM
WHERE THEY ARE BUT WHAT IS
INCLUSION, EXCLUSION AND WHO
DEFINES IT.
THAT PART ERIKA WILL SEEK INPUT
AND HAVE A STEERING COMMITTEE TO
HELP INFORM THAT BECAUSE WE
COULD MAKE THE WRONG DECISION IF
WE DON'T TAKE IN EVERYONE'S
OPINION.
I'M EXCITED ABOUT THE BECAUSE IT
DOES MIMIC EYE GENES AND PEOPLE
OFTEN MISDIAGNOSED.
WE LOOKED AT HOW FAR PEOPLE WENT
TO ENROLL IN OUR STUDY AND THE
AVERAGE WAS 400 MILES.
SO I DON'T KNOW CONVERSION TO
KILOMETERS -- IT WAS A
TESTAMENT.
JUST TO SAY WE CREATED THE
RESOURCE TO MEET PEOPLE WHERE
THEY WERE BUT PEOPLE STILL HAD
TO GO FAR TO FIND SPECIALIST.
WE LOOKED AT THE AVAILABILITY OF
EYE CARE PROVIDERS FOR THAT
GROUP TOO AND YOU SAW THE PEOPLE
WOULD TRAVELED THE FURTHEST CAME
FROM PLACES WITHOUT PROVIDERS.
SO THERE'S A LOT OF WORK TO
THERE AND WE CAN'T FIX THE
PROBLEM BUT WE AT LEAST SHOW
IT'S A PROBLEM.
I'M LOOKING FORWARD TO THAT AND
WE PLAN TO CAPTURE LOCATION OF
RESIDENTS KIND OF INFORMATION,
SOCIAL DETERMINATES OF HEALTH.
WE HAVE THE ADI, AREA
DEPRIVATION INDEX SO LOOKING
ACROSS THAT AND LOOKING AT
PROVIDER SHORTAGES AND GETTING
YOU MORE INFORMATION TO ADVOCATE
ON.
>> I'M STEPHANIE DUCING TO SPEAK
FOR 1 IN 30 STUDENTS WHO HAVE
CVI AND NOT DIAGNOSED.
MY SON WAS REPEATEDLY
MISDIAGNOSED UNTIL 15 YEARS OLD.
HIS FORM OF CVI IS AN ENTIRELY
INVISIBLE DISABILITY AND CAN'T
TELL HE'S ALMOST BLIND
PHYSICALLY OR ACADEMICALLY OR
SOCIALLY.
WE WENT THROUGH A NIGHTMARE
GETTING HIS DIAGNOSED FOR
$150,000 IN MEDICAL BILLS AND A
TRIP TO PARIS FOR A SPECIALIST.
IT WAS A NIGHTMARE.
IT'S UNACCEPTABLE AND HAS TO
CHANGE.
WE CANNOT CONTINUE TO USE
OUTDATED STEREOTYPES OF WHAT
PEOPLE WITH CVI SUPPOSEDLY LOOK
LIKE.
WE CANNOT TREAT PEOPLE WITH CVI
ADDS UNBELIEVABLE LIARS WHICH IS
THE WAY OUR FAMILY WAS TREATED.
I'M HERE TO SAY I'M GLAD TO SEE
EVERYONE WORKING TOGETHER
FINALLY ON THIS.
I WORK ROUTINELY WITH FAMILIES
LIKE MYSELF WHO HAVE CHILDREN
TEENAGERS WHO ARE DENIED A
DIAGNOSIS AND DENIED ACCESS TO
EDUCATION AND BRAILLE.
THEY ARE DENIED ACCESS TO
MOBILITY MY SON WOULD BE DEAD
NOW IF WE HAD LISTENED TO WHAT
SOME OF THE BEST IN THE UNITED
STATES TOLD US THAT WE SHOULDN'T
ENROLL OUR SON AND PUT HIM ON
ANTIDEPRESSANTS TO CURE HIS
BLINDNESS.
IT'S UNACCEPTABLE AND WE HAVE TO
CHANGE AND WITH 1 IN 30 CHILDREN
HAVING SYMPTOMS BUT THE MAST
MAJORITY LOOK LIKE MY SON AND
NOT SOME OUTDATED STEREOTYPE.
WE HAVE TO START BELIEVING THE
EXPERIENCES OF PEOPLE WHO HAVE
CVI.
AND LISTEN TO WHAT THEY SAY.
WHEN WE SAY WHY DO DIAGNOSTIC
PRACTICES VARY?
WE HAVE A SUBSET OF DOCTORS WHO
BELIEVE PEOPLE WITH CVI AND THEN
AS THE EVERYBODY ELSE.
THANK YOU.
I WANT TO MAKE A PITCH FOR TWO
THINGS.
THE ADAGE IF YOU CAN'T MEASURE
IT, YOU CAN'T STUDY IS AT THE
HEART OF WHAT I'M GOING TO SAY
AND FOLLOWS UP ON WHAT WE JUST
HEARD.
IT'S NOT JUST PEOPLE AREN'T BE
LIST SKENED TO BUT DON'T BRING
BEAR THE BEST TOOLS TO QUANTIFY.
I'LL MAKE A PITCH FOR TWO
THINGS.
ONE IS WE THE BEST
QUANTIFICATION POSSIBLE TO DO
THIS.
IF NOT IT GOES TO WHO WANTS TO
BRING THIS AND NEED TO MEASURE
AND USING THE BEST MEASURES
POSSIBLE AND TO UPDATE KNOWS AS
NEW ONES EMERGE.
SECOND IS WE HAVE TO DO IT
REPEATEDLY.
SINGLE MEASURES WON'T DO
ANYTHING HERE.
BECAUSE ANY MEASURE ANYWHERE CAN
BE USED FOR SOMETHING OR NOTHING
DEPENDING ON THE CIRCUMSTANCES.
THE REPEATED MEASURE IS
IMPORTANT PARTICULARLY FOR
SOMEONE WITH CVI BECAUSE IT'S
NOT JUST A VISUAL PROBLEM BUT A
DEVELOPMENT ANGLE TO IT.
ONE OF THE THINGS IS ABOUT
CHILDREN THEY DEVELOP AND CHANGE
A LOT OF EVEN THOSE WITH BRAIN
INJURIES.
IF WE CAN'T DISTINGUISH THE
NORMAL CHANGE FROM WHAT CVI IS
AND HOW IT'S MANIFESTING THE
TREATMENT WILL END UP MIRED IN A
LOT OF VARIABILITY.
IT'S IMPORTANT WE USE REALLY
OBJECTIVE QUANTIFICATIONS OF THE
THINGS WE'RE MEASURES GOING INTO
THIS
>> I'M FULLY ON BOARD WITH
STANDARDIZATION AND QUALITY AND
REDUCING MAKING THINGS OF OUR
OWN.
YOU SEE WE'RE CONSISTENT AND
TRYING TO WORK GLOBELY.
THIS IS A PROFIT THAT WILL
INVOLVE MANY INSTITUTES AND
CENTERS AND GLOBAL
COLLABORATORS.
I HEAR YOU LOUD AND CLEAR.
>> I'M FROM WASHINGTON STATE AND
EXCITED TO BE HERE TODAY.
I WOULD LOOK TO US TO HAVE SOME
SPECIFIC QUESTIONS ABOUT
EDUCATIONAL PLACEMENT AND AGAIN
SELFISHLY THINGS THAT CAN DERIVE
FUNDING TO DRIVE OUR TEACHER
TRAINING AND EDUCATIONAL
PLACEMENT AND ALSO SERVICES,
CONSIDERATION AND WHAT SERVICES
HAVE YOUR CHILD RECEIVE WHAT IS
THEIR SCHOOL SETTING LIKE
BECAUSE THOSE ARE IMPORTANT
THINGS AND IF WE CAN FIT THOSE
IN THERE SOMEHOW THAT'S
INFORMATION THAT WILL BE
BENEFICIAL FOR US AS WELL.
THANK YOU.
>> SKIP LIGE HERE.
HOW DOES A REGISTRY LIKE THIS
EVOLVE AND CHANGE OVER TIME?
AS TIME GOES ON OUR QUESTIONS
ARE GOING TO CHANGE AND DATA
POINTS MAY CHANGE.
WHAT'S THE PROCESS FOR ACHIEVING
CHANGE OVER TIME.
>> WE HEARD HOW WE WANT TO
UPDATE OUR DATA COLLECTION
POINTS AS WE LEARN NEW THINGS
HEAR LEARNING WHAT IS USEFUL AND
WHAT MEASURES ARE LEADING US TO
BETTER OUTCOME AND WE'LL BE ABLE
TO UPDATE QUESTIONS AND I THINK
OUR SYSTEM WILL ALLOW ARE US TO
INCLUDE OLDER DATA DATA AND MAP
IT TO PEOPLE CAN QUERY IN A WAY
THAT MAKES SENSE
>> WE CAN AND DO PLAN TO
COLLECTION INFORMATION OVER TIME
AND FROM DIFFERENT USERS.
THE PEOPLE ENTERING INFORMATION
IN THE SYSTEM IT'S PEOPLE LIKE
YOU AND THE BEAUTY OF FOLLOWING
A SIMILAR PROCESS TO WHAT WE
HAVE IN EYE GENE IS WE CREATED A
NICE WAY TO RECONNECT WITH
PEOPLE.
IF WE SEE SOME PATTERN IN A
GROUP OF PEOPLE WITH A CERTAIN
CONSTELLATION OF EXPERIENCES OR
COMORBIDITIES WE CAN TARGET THEM
FOR MORE SPECIFIC DATA
COLLECTION OR INFORMATION AND
INTERVIEWS AND SO --
>> SO WE ALSO WANTED TO TALK
ABOUT WHAT FUTURE USE CASES
MIGHT RESEARCHERS PROPOSE
BECAUSE THIS IS GOING TO HELP
GUIDE US AND AN IMPORTANT
FEATURE OF THE REGISTRY IS THAT
PEOPLE WILL USE IT FOR SECONDARY
RESEARCH.
SO IF THERE'S ANY IMPORTANT
QUESTIONS PEOPLE HAVE THEY WANT
RESEARCHERS TO EXPLORE COME UP
TO THE MICROPHONES FOR COMMENTS
OR QUESTIONS.
>> I JUST PUT UP A FEW OF
SOMEONE JUST LEARNING ABOUT CVI
OVER THE COURSE OF PLANNING FOR
THIS WORKSHOP ASKED AND I PUT
EXPLORE AGE OF DIAGNOSIS IN
RELATION TO OUTCOME OF INTEREST.
MAYBE THAT'S EDUCATIONAL LEVEL
OR OUTCOMES AND ASSOCIATION OF
MRI FINDINGS AND CVI PHASE.
THERE'S NOT A LOT OF EVIDENCE
THERE SO WE'LL SCRATCH THAT AND
I SAID PREVALENCE OF IMPAIRMENTS
AND COMORBIDITIES.
>> I ALWAYS LIKE TO THINK HOW WE
CAN GET EARLY WINS.
IF WE CAN PHRASE FIVE REALLY
INTERESTING QUESTIONS THE
REGISTRY OF THIS WORK CAN
ANSWER.
CAN WE DO THAT AS A START
LEADING TO FIVE MORE QUESTIONS
AND HEAR WHAT ARE THE FIVE
QUESTIONS AND I PROPOSE AT THIS
STAGE BECAUSE THERE'S SO MUCH
UNCERTAINTY THEIR SIMPLE LIKE
AGE OF ONSET VERSUS DIAGNOSIS.
WE CAN ANSWER THAT IN A YEAR'S
TIME.
WHAT ARE FIVE SIMPLE QUESTIONS
WE CAN ANSWER TO GET US GOING?
>> I DON'T KNOW ABOUT FIVE BUT I
CAN GIVE YOU ONE.
I THINK INTERVENTIONS AND
UNDERSTAND WHO IS GETTING IT IS
AN IMPORTANT THING TO ADD TO THE
REGISTRY.
>> FOR ALL THE PANEL MEMBERS,
WHO SHOULD BE CONTRIBUTING AND
CAN YOU THINK ABOUT A
CONTRIBUTIONS AND WHERE IT COMES
FROM?
>> THE MORE I HEAR ABOUT WE
DON'T EVEN HAVE A REAL GOOD
DEFINITION I'D LIKE TO HAVE
INPUTS FROM DIFFERENT PEOPLE AND
PROVIDERS AS WELL AS FAMILY
MEMBERS AND EDUCATORS.
THOSE ARE THREE BIG AREAS AND I
THINK EVERYONE HAS A DIFFERENT
PERSPECTIVE WE SHOULD BE
COLLECTING.
>> THANK YOU.
>> I THINK IT'S IMPORTANT TO GET
INFORMATION OUT TO WHAT
STRATEGIES WORK AND DON'T WORK
AND WHICH WORK FOR WHICH
PATIENTS IS A BROAD
CLASSIFICATION.
I ALSO WANT TO ECHO THE ROLE OF
INTERVENTION AND NEUROPLASTICITY
AND THROW IN A CAUTIONARY NOTE
ABOUT THE REGISTRIES ALWAYS
COLLECT GENETIC INFORMATION AND
INFORMATION ABOUT MRI OF THE
OPTIC NERVE AND WITH THE
STRATEGY YOU'LL GET CHEAP
POSITIVE RESULTS BUT IT'S NOT
REALLY HELPING THE FAMILIES.
I DON'T KNOW HOW YOU CAN KEEP IT
FOCUSSED ON WHAT MATTERS TO THE
FAMILIES AND KEEP FOCUSSED ON
WHAT WORKS AND WHAT PROGRESS YOU
HAVE.
>> WHEN YOU SAY STRATEGIES
DIAGNOSTIC STRATEGIES OR BOTH?
>> AVAILABLE FOR RESEARCHERS SO
I THINK KEEP YOU'RE EYES ON THE
PRIZE.
WHAT'S THE IMPACT OF EARLY
INTERVENTION IS POSITIVE YOU CAN
GO TO GENETICS.
I THINK YOU MAY GET FALSE
POSITIVES AND EVEN WITH IMAGING
YOU'LL GET CORRELATIONS BUT ONLY
IN THE FACT THEY HAVE CVI.
>> IN THE LIST OF PEOPLE
INVOLVED IN INPUT I THINK IT'S
PROBABLY IMPLIED BUT TO BE SURE
THOSE WHO HAD PARTICULARLY THE
EXPERIENCE OF CVI THAT WON'T FIT
INTO WHAT THOSE HAVE LANGUAGE
FOR AND IT SEEMS LIKE A
DIFFICULTY IN PUBLICIZING AS
WELL AS BRINGING PEOPLE TOGETHER
IN A MORE UNIFIED FASHION IS SO
MANY -- THAT ELEPHANT PICTURE,
SO MANY WAYS AND OF NAMING
THINGS.
WE WANT TO HAVE THE EXPERIENTIAL
INPUT AS WELL.
ONE OTHER THOUGHT A COMPLETELY
DIFFERENT THING AND OTHER
THOUGHT OF GOING PUBLIC, IF YOU
WILL, IS MAYBE NOT REALLY FOR
NOW BUT THINKING AHEAD ABOUT THE
CAMPAIGNS SUCH AS FOR STROKE AS
A BRAIN HEART ATTACK AND SO
FORTH.
MORE BROAD PUBLIC AWARENESS AT
LEAST ONCE YOU GOT THINGS WELL
ENOUGH DEFINED SAYING THIS IS
WHAT WE'RE TALKING ABOUT.
BRINGING IN THE INPUT.
>> JOHN AND THEN KAREN.
IF THE CHILDREN ON OUR SYSTEM
HAVEN'T BEEN SEEN BY A
REHABILITATION OR WHATEVER AND
WE MONITOR HOW QUICKLY IT TAKES
THE TEAMER TO SEE THE CHILD WITH
CVI AND HAVE TWO WEEKS.
SO WE REFER FROM THE REGISTER TO
THE EDUCATION SERVICE OUR
STANDARD IS THAT CHILD MUST BE
SEEN WITHIN TWO WEEKS.
WE MONITORED THE STANDARDS.
WE HAVE A WHOLE RANGE OF
STANDARD BASED ON THE REGISTER
WE PUBLISHED AND KPI IS ON THAT.
THAT'S A REALLY USEFUL TOOL TO
HAVE.
I DON'T SEE THAT HERE TO BE
HONEST.
I DON'T THINK IT'S NIH'S ROLE
BUT MAYBE IT IS.
AS AN OBSERVER OF IT, THOSE
STANDARDS AND MAPPING THEM ON TO
HOW MANY CHILDREN HAVE BEEN
NOTIFIED AND SEEN INTO THE
EDUCATIONAL SYSTEM AND
REHABILITATION SERVICES IS
REALLY KEY.
THAT'S A KEY FEATURE OF THE
SCOTTISH SYSTEM BUT I DON'T SEE
THAT AND MAY BE A ROLE THING.
>> I'M FROM CINCINNATI.
FROM MY OT PERSPECTIVE THINKING
ABOUT FUNCTIONAL PERFORMANCE ADD
MEASURING HOW MUCH HELP A CHILD
NEEDS AND ARE THEY DOING WHAT
THEY LOVE AND PLAYING SPORTS OR
DRAWING A PICTURE FOR THEIR
PARENTS.
THINKING ABOUT THE CHILD'S GOALS
AND PARENT'S GOALS AND I MESSED
THE BOAT ON THE LAST QUESTION
BUT MAKING SURE WE HAVE SOME
INDIVIDUALIZED STANDARDIZED
METRIC TO MEASURE FUNCTION.
>> I'M FROM PERKINS SCHOOL FOR
THE BLIND AND THE NEXT QUESTION
IS ABOUT DIFFERENT DATA BEING
COLLECTED AND QUESTIONS COMING
FROM IT.
COMING AT CVI FROM BEING A LOW
VISION OPTOMETRIST I THINK WHILE
IT'S IMPORTANT TO STANDARDIZE
OUR DATA THERE'S VALUE IN ALSO
REPORTING THE PARTICULARLY THE
VISION ASSESSMENTS BECAUSE WE
HAVE A VERY HETEROGENOUS
POPULATION AND HAVE TO ADAPT OUR
TESTING STRATEGIES TO THE
PATIENT AND SOMETHING WOULD BE
LOST IF WE DIDN'T CAPTURE WHAT
NEEDED TO BE DONE TO COLLECT THE
DATA FOR THAT CHILD.
I ALSO THINK FROM A QUALITY OF
LIFE QUESTIONNAIRE, I THINK WE
CAN LEARN A LOT FROM THE LOW
VISION FIELD IN TERMS OF MAKING
THOSE QUESTIONNAIRES ADAPTIVE
AND TRAP WHAT'S IMPORTANT NOT
ONLY WHAT CAN YOU DO AND YOUR
VISIBLE ABILITY AND TRACK IF THE
INTERVENTIONS ARE IMPROVING THE
THINGS IMPORTANT TO THE PATIENT
AND FAMILY.
>> I WOULD LIKE TO LOBBY FOR AN
ET -- ETIOLOGY OR CAUSE AND
WHEN WE SEE AND THAT MAY TIE
INTO THE DISASSOCIATION OF
RADIOLOGY.
I WANTED TO SAY I THINK IT'S
IMPORTANT AND MAKE AN EFFORT TO
TRY TO CAPTURE THAT DATA.
>> FOR THE WHOLE ROOM, DON'T
ASSUME WE KNOW ANYTHING.
I APPRECIATE OBVIOUS -- STATE
THE OBVIOUS BECAUSE WE'RE JUST
LEARNING ABOUT THIS OURSELVES.
>> I'M FROM THE CEREBRAL PALSY
NETWORK AND SET UP A TAXONOMY
AND WHAT IS REQUIRED FOR A CORE
DATA ELEMENTS AND OTHER THINGS
THAT ARE OPTIONAL SO YOU CAN
KEEP IT THE MOST CLINICAL AS
POSSIBLE.
BECAUSE IF YOU GET TOO DIFFERENT
FROM BEING CLINICAL YOU'RE GOING
TO LOSE PEOPLE IN THEIR
CONSISTENCY OF DATA COLLECTION
SO THE MORE YOU CAN INTEGRATE IT
INTO THE CLINIC, KEEP IT
EFFICIENT WITH THE FLOW IT WILL
REALLY HELP.
AND THEN SECOND THING IS JUST TO
CONSIDER THE CLINICAL DATABASE
AND THE COMMUNITY OR THE
EXPERIENCE TO INCLUDE EITHER
BOTH OF THEM IN ONE OR HAVE THEM
BE ABLE TO TALK TO EACH OTHER.
>> VERY GOOD.
THE SYSTEMS WE'RE USING THE
FORUMS ALLOW US TO CREATE CORE
ELEMENTS AND SUPPLEMENTAL ONES
TO MAKE REQUIREMENTS AND IT HAS
THOSE TOP GAP THINGS AND IT'S
NICE FOR DATA MANAGERS.
START SMALL.
WE NEED TO RECOGNIZE THIS TAKES
PEOPLE TIME TO DO AND TRACKING
THAT OUT AND BEING AS -- LIKE
THESE ARE THE CORE THINGS AND I
LIKE FIVE QUESTIONS.
LET'S NOT HAVE 25 QUESTIONS.
LET'S START WITH FIVE AND GO FOR
ANOTHER FIVE LATER BECAUSE WE
NEED TO VALUE PEOPLE'S TIME AND
ENERGY.
WE'LL HAVE DIFFERENT FORMS BASED
ON DIFFERENT USERS AND BASED ON
THE CONTENT AND COMBINE THEM THE
PROVIDER ENTERED INFORMATION
VERSUS THE LIVED EXPERIENCE AND
THAT KIND OF THINK BUT THANK
YOU.
IT'S GOOD TO HEAR WE'RE ON THE
RIGHT TRACK.
>> I HAVE A QUESTION FOR JOHN
AND A COMMENT.
I'M CURIOUS, SOMEONE BROUGHT UP
OUTCOMES.
I'M WONDERING IF YOU'RE TRACKING
OUTCOMES AT ALL IN YOUR TOOL IN
SCOTLAND AND SECONDLY IF WE'RE
THINKING ABOUT QUALITY OF LIFE,
EDUCATIONAL OUTCOMES, ETCETERA,
I'M WONDERING IF THERE'S THE
OPPORTUNITY TO PARTNER WITH THE
DEPARTMENT OF SPECIAL EDUCATION
OFFICE AND FIGURE OUT WAYS AND
THERE'S PROBABLY LESSONS WE CAN
LEARN FROM THAT AND GET
INTEGRATE AND GET BETTER
INFORMATION SOONER.
THANK YOU.
WE'RE NOT TRACKING THE
EDUCATIONAL OUTCOMES BUT WE WITH
DOUGH HAVE THE CAPABILITY
BECAUSE EVERY CHILD ON THE SET
HAS ITS UNIQUE CODE AND THAT'S
ACROSS EDUCATION FROM HEALTH AND
SOCIAL WORK.
WE'RE ABLE TO COMBINE THOSE DATA
SETS FROM THE SCOTTISH
GOVERNMENT.
SO WE ARE ABLE TO CORRELATE THE
CHILDREN WITH THE EDUCATION
OUTCOME BUT DON'T SPECIFICALLY
ON OUR REGISTER TRACK THOSE AT
ALL.
I'D LIKE TO BUT THERE'S A LIMIT
ON WHAT I CAN PUSH.
>> I'LL POSE THAT BACK TO YOU.
DO YOU HAVE EXPERIENCE WITH WHAT
YOU WORKED ON OR SOMETHING
SIMILAR AND BROUGHT IN
EDUCATIONAL INFORMATION?
>> I DID HEAR THIS MESSAGE IN
PITTSBURGH THE DEPARTMENT OF
EDUCATION AND SOMEONE ADVOCATED
FOR INCLUDING THEM IN THE
PROJECT AND I HAPPEN TO RUN INTO
SOMEONE AND SENT THEM THE LINK
TO THE WORKSHOP TO SHARE WITH
THEIR EDUCATORS BUT I ANTICIPATE
FOLLOWING UP.
I CAN'T MAKE PROMISES AT THIS
POINT BUT IT'S AN AREA OF
INTEREST TO US AND HOPEFULLY WE
CAN MAKE THE CONNECTION.
>> MIKE KAVANAUGH OF RODCHESTER.
I WANTED TO ADVOCATE FOR VISUAL
PEREMETRY AND IT HAS A
VARIABILITY IN THE TYPES OF
TESTS YOU CAN PERFORM AND NONE
ARE IDEAL FOR THE PATIENT
POPULATION EITHER SO FUTURE
DEVELOPMENT OF BETTER DIAGNOSTIC
GAPS SPECIFIC FOR THIS CONDITION
WILL ALSO BE POTENTIAL OUTCOME
FROM THE REGISTRY.
>> THE INCLUSION OF DATA ACROSS
THE LIFE SPAN AND THE TRANSITION
TO ADULTHOOD AND NOT JUST THE
PERIOD BUT EXTENDING INTO
ADULTHOOD TO BETTER UNDERSTAND
HOW THE MANIFESTATIONS CHANGE
AND THEIR CAREGIVERS.
AND HOW THAT IMPACTS AND QUALITY
OF LIFE QUESTIONNAIRE NOT JUST
FOR THE INDIVIDUAL BUT THEIR
FAMILY MEMBERS AS WELL AND
IMAGING FOR THE SCREENING.
>> I WAS HAPPY IT HEAR THE
DATABASE WAS GOING TO HAVE LIVED
EXPERIENCES FROM PEOPLE.
WHEN WE STARTED WORKING WITH
CVI, WE HAD TO INFER WHAT THE
EXPERIENCES WERE WITH THE
CHILDREN WITH CVI BECAUSE THEY
COULDN'T TALK.
THEY COULDN'T WALK.
THEY COULDN'T TELL US AND WE'RE
LEARNING SO MUCH MORE NOW AND
EXPANDING AND THE DEFINITION IS
EXPANDING BECAUSE OF THAT.
MY CONCERN IS THE DATABASE IS
RUNNING FROM A DEFICIT MODEL
SAYING WHAT PEOPLE DON'T HAVE
RATHER THAN WHAT THEY DO HAVE.
THEY DON'T HAVE THIS -- THEY
DON'T HAVE THAT.
THEY DON'T HAVE THAT.
THE PROBLEM IS WHEN YOU DO
INTERVENTIONS YOU HAVE TO LOOK
AT THE STRENGTHS AND WEAKNESSES
BECAUSE IF YOU JUST LOOK AT THE
WEAKNESSES YOU CAN TOTALLY MISS
THE APPROPRIATE INTERVENTIONS
FOR THE PERSON.
WHAT WORKS FOR ONE PERSON CAN
TURN SOMEBODY TOTALLY OFF.
THERE HAS TO BE SOME WAY OF
COLLECTING DATA FOR INVENTIONS
AND MATCHING IT AND LOOKING AT
THE CHILDREN'S STRENGTHS BECAUSE
OTHERWISE THEY'LL BE COOKIE
CUTTER APPROACHES AND I CAN'T
TELL YOU HOW MUCH TIMES I'VE
READ ALL THE MEDICAL DATA POINTS
AND GONE INTO LOOK AT CHILDREN
AND FOUND THEM TO BE COMPLETELY
DIFFERENT FROM WHAT I ENVISIONED
IN MY MIND AND WOULD HAVE DONE
SOMETHING COMPLETELY WRONG FOR
THEM AND NOT HELP THEM.
SO THAT WOULD BE MY CONCERN AND
THE OTHER IS TO BE CAREFUL ABOUT
USING THE TERMS NEURO TYPICAL
AND NEURAL ATYPICAL.
I LIKED IT WHEN THEY TALKED
ABOUT NEURODIVERSITY.
THERE'S NOT AN EITHER/OR.
IT'S A WHOLE RANGE OF PEOPLE.
THERE WOULD BE A WHOLE RANGE OF
NEURODIVERSITY IN THIS ROOM I
MEAN, WHO IS NORMAL, REALLY.
WE HAVE TO BE CAREFUL ABOUT THAT
BECAUSE IT'S GOING TO TYPE
PEOPLE AND TYPE PEOPLE LIKE
SEBASTIAN AND LIKE THE CHILDREN
THAT RACHEL WORKED WITH AND IT'S
GOING TO PUSH THEM OUT.
WE NEED TO INCLUDE THEM.
THANK YOU.
>> THANK YOU.
I'LL LEAVE THE LAST WORD WITH
KERRY AND ERIKA.
>> ALL RIGHT.
I JUST WANTED TO SAY THANK YOU
SO MUCH EVERYONE FOR YOUR
ATTENTION AND FOR YOUR
PARTICIPATION IN THIS DISCUSSION
AND SHARING YOUR IDEAS.
PLEASE CONNECT WITH ME IF YOU
WANT TO TALK ABOUT THE REGISTRY
FURTHER.
MY E-MAIL IS ERIKA.NELSON AT
NIH.gov AND IT'S ERIKA WITH A
"K".
AND I INCLUDED OUR NEI CVI
MAILBOX ON THERE AS WELL.
THANK YOU SO MUCH.
TWO MINUTES AFTER THE TOP OF
THE HOUR.
LUNCH IS HERE AND WE'RE ON LUNCH
BREAK NOW AND RECONVENE AT
12:40 -- IS THERE A CHANGE?
GROUP PHOTO.
WHILE PEOPLE ARE HUNGRY, GREAT
IDEA IF WE CAN CONVENE AT THE
FRONT AND GET A SLIDE AND TAKE A
GROUP PHOTO.
PLEASE JOIN US FOR THAT BEFORE
YOU GRAB YOUR LUNCH.
THANK YOU.
ALSO AN INDICATION THIS IS
PRETTY TYPICAL WE GET KIDS FROM
DEPRIVED HOUSEHOLDS AND
COMMUNITIES LIKE EVERYBODY ELSE.
WE HAD POOR FIXATION WITH EITHER
EYE WE COULD NOT ELIST IT
FIXATION PREFERENCE AND HAD FULL
EYE MOVEMENTS AN AND HAS HE HAD
A LOW REFLECTIVE AREA.
HIS OPTIC NERVES LOOKED PALE AND
TYPICALLY WHAT WE SEE WITH
TEMPORAL POWER AND WE SEE
LOW-FUNCTIONING CVI HERE.
THEY HAVE TO MAKE THEY CAN MOVE
THEIR EYES BECAUSE WE ASSESS
BABIES BASED ON THEIR EYE
MOVEMENT.
DO THEY FOLLOW AN OBJECT OR
REDIRECT THEIR GAZE TOWARDS
SOMETHING AND REQUIRES IT BE
INTACT.
WE HAVE TO ASSESS AN EYE-VISION
PROBLEM AND NORMAL RESPONSES TO
LIGHT AND IB GENERAL THEY HAVE
TO HAVE NISTAGMUS AND THE HAVE
OPTIC ATROPHY WE ASSESS VISUAL
WE BEHAVIORAL TO NORMAL VISUAL
BEHAVIOR FOR AN INFANT WHICH IS
RELIABLE FIXATION IN PURSUIT OF
A ONE-INCH TOY AT TWO FEET OR
ACUITY BETTER AT 20/50.
YOU CAN SEE THE RANGE AND THIS
CHILD WOULD BE CLASSIFIED AS A
TYPE 2 AND FIXATE ON LARGE
OBJECTS AND THAT'S ABOUT IT.
HIS VISION IS POOR SO HE
QUALIFIES ON THAT BASIS AND NOT
USING HIS VISION TO INTERACT
WITH THE ENVIRONMENT AND WOULD
BE LOW PHASE 1 AND FROM THAT
POINT OF VIEW HE QUALIFIES.
AND THIS CHILD HAD NUMEROUS
COMORBIDITIES.
OPT
OPTIC ATROPHY AND NYSTAGMUS AND
HOW REFLECTIVE ERROR.
OUR MANAGEMENT STRATEGY WAS IN
ESOTROPIA AND WE DO NOT GIVE A
LOW REFRACTIVE TREATMENT WITH
SOMEONE THIS BAD OF VISION AND
HE DIDN'T GET IT.
OVER THE NEXT YEAR HE IMPROVED
AND THAT PUT HIM AT A LEVEL 4 ON
THE VISUAL BEHAVIOR SCALE AND
HAD A PREFERENCE FOR THE LEFT
EYE AND DIAGNOSED HIM OF
STABISMIC AMBLYOPIA AND AND THE
FACTORS ASSOCIATED WITH POOR
IMPROVEMENT THAT WAS DONE
INCLUDES OLDER AGE AT
PRESENTATION SEIZURES THAT WERE
HARD TO CONTROL, CEREBRAL PALSY
AND OPTIC ATROPHY WE SEE IN THIS
CASE, NONETHELESS, IN SPITE OF
HAVING MANY OF THESE THINGS,
THIS CHILD HAD IMPROVEMENT IN
HIS VISION.
WE STARTED PATCHING HIS LEFT EYE
IN GOOD COMPLIANCE WITH HIS
FOSTER MOTHER AND HIS STABISMUS
WAS THE SAME FINDING AND WHAT
WOULD BE THE FINDING FOR
STRABISMUS SURGERY AND TAKE A
COHORT OF 70 CHILDREN FOLLOWED
FOR A LONG PERIOD OF TIME ALL OF
WHOM HAD CVI AND STRABISMUS, AND
TURNED OUT INTERESTINGLY ENOUGH
RESOLUTION OF THE STRABISMUS
OCCURRED IN 16% AND STRABISMUS
AND THE REMAINDER OF THE GROUP
WOE DID A SUBSEQUENT STUDY LOOK
AT THINGS WITH IMPROVEMENT AND
THIS IS A RETROSPECTIVE STUDY
LIKE THE PREVIOUS ONE AND ONCE
AGAIN ON THIS CASE OUR CRITERIA
FOR SURGERY WAS THE STRABISMUS
WAS STABLE, THEY HAD GOOD
CONTROL AND THE UNDERLYING
NEUROLOGIC CONDITION WAS STABLE
AND THE VISUAL ACUITY WAS 3 OF 6
AND IDENTIFIED GOOD OUTCOME AND
HALF HAD GOOD ALIGNMENT AFTER
AND ONES WHO HAD ONES WHO HAD
CEREBRAL PALSY IN BLUE HAD A
SLIGHTLY LESS FAVORABLE OUTCOME
WHICH CAN'T JUST REACH
STATISTICAL SIGNIFICANCE AND IF
YOU LOOK AT HOW THEY GROW OVER
TIME YOU CAN SEE THOSE WITH
CEREBRAL PALSY FAIL WITH TIME OF
FOLLOW-UP AFTER ABOUT 12 YEARS
OR SO THE VAST MAJORITY OF THEM
HAVE FAILED WHERE IS THOSE
WITHOUT CEREBRAL PALSY REMAINS
AT ABOUT 50% SUCCESS RATE.
THIS CHILD UNDERWENT STRABISMUS
SURGERY AND WAS STRAIGHT POST
OPERATION AND THERE WAS SOME
OCULARITY AND WE CONSIDER THAT
AN EXCELLENT OUTCOME.
IN SUMMARY, ONCE AGAIN WE
DIAGNOSED WITH CVI VISION LOST
WORSE THAN EXPECTED WITH DEGREE
OF PATHOLOGY AND THIS IS SUCH A
CASE.
IF YOU'RE DEALING WITH
HIGH-FUNCTIONING CVI, WHICH THIS
IS NOT AND MAY REQUIRE OTHER
MEASURES WE ASSESS THE VISION
FUNCTION AND MOST IMPROVE OVER
TIME IN OUR EXPERIENCE AND IN
OTHER REPORTS IT IMPROVES ABOUT
50% OF THE TIME AND SURGERY IS
AN OPTION IN KIDS WITH CVI
THOUGH THOSE WITH COMORBID
CEREBRAL PALSY ARE THOUGHT TO
HAVE WORSE OUTCOMES AND THIS IS
A CHILD WHO HAD AT LEAST OVER
ONE YEAR HAD GOOD OUTCOMES AND
DID HAVE CEREBRAL PALSY SO IT'S
NOT AN EXCLUSION THING FOR SURE.
THANK YOU VERY MUCH.
>> OUR NEXT TOPIC IS DR. ARVIND
CHANDNA HE'S A SENIOR CLINICIAN
SCIENTIST AND LEADS THE SEELAB
AT THE SMITH KETTLEWELL EYE
RESEARCH INSTITUTE.
>> THANK YOU VERY MUCH.
I'M PRIVILEGED TO BE HERE.
I STAND HERE ALONE BUT REPRESENT
A TEAM OF PEOPLE CARRYING ON THE
CVI RESEARCH PROGRAM AND ALSO
MORE IMPORTANTLY THE PARENTS AND
THE OLDER CHILDREN AND ADULTS
WHO PARTICIPATED IN OUR STUDY.
AND I WANT TO TALK ABOUT THE
UNSPOKEN CHILDREN OR CHILDREN WE
DON'T ASSESS BECAUSE THEY HAVE
GOOD VISUAL ACUITY AND DON'T
THINK THEY HAVE CVI AND THE
CHALLENGES ARE IN CONCERT WITH
THE STANDARD OF VISUAL ACUITY
AND VISION IS MORE THAN VISUAL
ACU
ACUITY.
1 IN 30 CHILDREN MAYBE
UNDIAGNOSED AND WE'RE BEGINNING
TO TALK ABOUT IT AND REMEMBER
THERE'S NO MENTION OF VISUAL
ACUITY IN THE DEFINITION.
SO VISUAL FUNCTION VISUAL
ACUITY.
HERE WE ARE.
THE CHARACTERISTIC FIGURE IN
VISUAL IMPAIRMENT AND DORSAL
STREAM WITH THE PATHWAY AND THE
ACTION PATHWAY ALSO CALLED THE
NON-CONSCIOUS PATHWAY WE USE ALL
THE TIME WITHOUT KNOWING IT AND
THE VISUAL FUNCTIONS ASSIGNED
WHICH ARE ALL HIGHER VISUAL
PERCEPTUAL FUNCTIONS AND ALSO
NOW WE HAVE THIS IS THE
CONSCIOUS VISION AND WE HAVE
INFORMATION ABOUT THE
INTERCONNECTED PATHWAYS THE
VERTICAL OCCIPITAL KONGS AND IT
INTEGRATES THE FUNCTIONS IN THE
VISUALLY GUIDED BEHAVIORS.
AND THEREFORE THE FUNCTIONS
ASCRIBED ARE NOT TOTALLY KNOWN
YET BUT HAVE VISUAL REACHING.
THERE'S A PROBLEM IN CVI AND
WHAT GOES ON?
HERE ARE SOME OF THE VISUAL
PERCEPTUAL DEFICITS THAT OCCUR
IN THE DORSAL PATHWAY COMMONLY
SUSCEPTIBLE BUT IT DOESN'T
EXPLAIN IT ALL.
THERE'S AN INFINITE VISUAL
PERCEPTUAL GUIDED CHALLENGES
FACE DESPITE HAVING NORMAL
VISION ACUITY AND NONE OF THIS
HAS TO DO WITH VISUAL ACUITY AND
THEY PRODUCED THE QUESTION WHICH
COVERS A LARGE POPULATION OF
THIS MULTI-LAYERED,
MULTI-DIMENSIONAL CONDITION AND
HIGH VISUAL QUESTION CAN WHICH
WE STARTED USING IN 2019 AND
USED IN CVI CHILDREN WITH NORMAL
VISUAL ACUITY AND REFERRED TO
THE EYE DEPARTMENT BY MULTIPLE
REFERRALS AND HAD AN INDEPENDENT
DIAGNOSIS OF IMPAIRMENT BEFORE
WE APPLIED THE QUESTION AND IT
WAS APPLIED BY NAIVE TESTERS.
THE HIGH VISION FUNCTION
INVENTORY IS BASED ON A PAPER
WITH A SCORING SYSTEM FROM 0 TO
4 NOW 1 TO 5 AND GOES FROM DOES
YOUR CHILD HAVE THIS DIFFICULTY,
NEVER, RARELY, SOMETIMES, ALWAYS
AND PICK UP THINGS THE CHILD OR
PARENT OBSERVES CAN DO CANNOT
CAN DO WHICH NEVER OR CAN DO
THROUGH THEIR OBSERVATIONS.
WE USE THIS IN THE FIRST STUDY
THEN AFTER A PILOT STUDY WE
FOUND THAT IT IS BEST TO CONVERT
THAT TO AN APPLICATION AND
ESPECIALLY PROFESSOR DUTTON
MODIFIED AND PRODUCED AN APP AND
I CAN SHOW YOU A SHORT
DEMONSTRA
DEMONSTRATION, I HOPE I CAN BUT
THE QR CODE WILL GIVE A
DEMONSTRATION AND PLEASE SHARE
WITH OTHER PEOPLE.
THANK YOU.
I'LL MOVE ON.
HERE I'LL MOVE STRAIGHT TO THE
RESULTS AND YOU CAN SEE THE
SCORE 0-5 ON THE VERTICAL AXIS
AND EVERY QUESTION SCORE FOR THE
WHOLE GROUP OF THESE 33 CHILDREN
WITH NORMAL VISUAL ACUITY AND
112 NEUROTYPICAL CHILDREN AND
EACH OF THOSE SCORES WILL COME
UP FOR THE 51 QUESTIONS AT THE
TIME.
YOU CAN SEE THE CLEAR DIFFERENCE
IN THEIR SCORES.
YOU CAN ALSO SEE FURTHER DOWN ON
THE CHART THERE ARE SOME
OVERLAPPING.
AND THESE QUESTIONS ARE
CLUSTERED ACCORDING TO THE
VISUAL PERCEPTUAL DEFICIT HAVING
TO DO WITH DORSAL STREAM AND
THESE WITH THE RENTAL STREAM AND
THERE WERE DORSAL STREAM
DEFICITS DESPITE NORMAL ACUITY
AND DIDN'T HAVE SA SEVERE
DEFICIT AND WE SEE YOU THE EEG
TESTS.
HERE RED AND THE MEDIAN SCORE IS
AROUND TWO WHEREAS FOR THE
NEUROTYPICALS IS ABOUT ZERO AND
THE CLEAR DIFFERENCE OF THE
QUARTILES THE 75% OF DIFFERENCES
ARE HUGELY DIFFERENT AND
STATISTICALLY SIGNIFICANT.
WE CAN'T ASK ALL 51 QUESTIONS.
WE WANTED TO KNOW WHETHER SOME
QUESTIONS WERE MORE
DISCRIMINATORY THAN ANOTHER AND
COMPARED THE SCORE BY DIVIDING
IT INTO DIFFERENT SECTORS AND
RATHER THAN GOING IN THE DETAIL
I CAN SHOW YOU THAT WHENEVER WAY
YOU SLICE THIS WE FOUND
SIGNIFICANT DIFFERENCES A PART
FROM THE ALWAYS QUESTION.
AND A SHORT STORY, THIS IS
PUBLISHED.
YOU CAN LOOK AT THE DETAILS BUT
WE FOUND 11 QUESTIONS YOU CAN
SEE THEM IN RED.
THEY'RE THE TOP SCORERS.
FROM THIS ANALYSIS AND THE TOP
11 DISTINGUISHED FROM THE
NEUROTYPICAL AND THIS WAS FROM
THE CHILDREN WITH NORMAL VISUAL
ACUTE.
-- ACUITY AND WE WENT FROM 21 TO
23.
WE HAVE THE SAME QUESTIONNAIRE
AND THESE ARE DIFFERENT LEVELS
OF VISUAL ACUITY AND HOW THEY
COMPARE THE CHILDREN WITH NORMAL
VISUAL ACUITY AND YOU CAN SEE
THE PICTURE IS EXACTLY THE SAME.
IT'S EMBARRASS TO SHOW THE
MIRROR IMAGE OF THE PREVIOUS
STUDY IN YELLOW DOWN BELOW.
COMBINED DATA.
WE KNOW THERE'S NO DIFFERENCE AT
ANY LEVEL.
WE COMBINE THE DATA IN FIGURE 1
AND IT LOOKS NO DIFFERENT THAN
THE OVER ALL DATA BETWEEN CVI
AND THE VALUES ARE LESS AND THE
FIGURE 2 LOOKS AT WHETHER WE CAN
FIND THE DIFFERENCE AND THESE 10
QUESTIONS ARE PRODUCED BY
MACHINE LEARNING.
MOVING ON, THE SCORE AND WHAT
WE'RE INTERESTED IN THE HIGH
VISUAL DEFICITS AND LOOK AT
VISUAL ACUITY.
SHOWING THIS ASSESSMENT IS AS
IMPORTANT IN CHILDREN WITH LOWER
VISUAL ACUITY AS WITH CHILDREN
WITH LOWER VISUAL ACUITY AND
INDEPENDENT CORROBORATION OF
THIS.
THIS IS THE PART I NEED TO
EXPLAIN A LITTLE BIT BEFORE WE
MOVE ON.
THE SKEPTICS INCLUDING MYSELF
INITIALLY AND ALL OF US IN THE
AUDIENCE WHY SHOULD WE BELIEVE
THE PARENT OBSERVATIONS?
PARENTS WOULD LIKE TO SAY THEIR
CHILD IS VERY EFFECTIVE, IN MY
OPINION HIGH AND WHAT IS THE
CORROBORATION OF THE DEFICIT?
THE ANSWER MAY LAY IN A
TECHNIQUE WE WERE USING CALLED
THE EEG AND USED ELECTRODES AND
IN RESPONSE TO VISUAL STIMULUS
CALLED STEADY STATE AND IF YOU
AT THE RIGHT THE STIMULUS GOES
FROM EASY THINGS TO SEE TO
SOMETIMES DIFFICULT THINGS TO
SEE AND THERE WE CAN PRODUCE
STIMULUS FROM VARIOUS KINDS OF
VISUAL FUNCTION THAT HAVE
NOTHING TO DO WITH VISUAL ACUITY
WHICH IS PRODUCING COMPLEX
MOTION AND FACE PROCESSING BUT
NOT RECOGNITION YET.
THESE ARE SOME OF THE STIMULI.
I CAN SHOW YOU RESULTS OF THESE
CHILDREN WITH NORMAL VISUAL
ACUITY THE SAME CHILDREN
INDEPENDENTLY IN THE STEADY
SPACE VEP.
HERE WE STUDIED 35 CHILDREN,
SAME, 27 NEUROTYPICAL CHILDREN
AND THIS IS A CARTOON OF THE
FIVE ELECTRODES AND THE CHILD
AND IT SPANS THE AREA OF THE
VISUAL CORTEX AND SURROUNDING
AREAS, REAR, VENTRAL AND DORSAL.
WHEN YOU SHOW A STIMULUS AND
STARTS OFF SWEEPING AND YOU GET
A RISE IN AMPLITUDE SHOWED IN
THE BLACK LINE VERTICAL AXIS AS
THE STIMULUS BECOMES MORE VISUAL
AND AT WHAT POINT DID THE CHILD
SEE THE STIMULUS AND HOW DID
THEY RESPOND TO THE STIMULUS
SWEEPING ACROSS AND BECOMING
MORE AND MORE VISUAL CALLED
VISUAL PROCESSING.
THAT'S THE RESPONSE.
WE CAN ANALYZE BOTH THINGS.
WE GET TWO ANSWERS IN ONE.
I'M GOING TO SHOW YOU THIS.
I'M GOING TO SHOW YOU THE
ELECTRODES LEFT TO RIGHT.
YOU SEE THE STATISTICAL
SIGNIFICANCE IF IT DIPS BELOW
THE DOTTED LINE IT'S HIGHLY
SIGNIFICANT.
NOW, IT IS THE TOP ROW, AGAIN,
NEUROTYPICAL, 33 AND 35 CVI AND
BLUE FOR NEUROTYPICAL AND I'LL
SPEND TIME ON THIS AND
EVERYTHING IS THE SAME.
THE VERTICAL AXIS SHOWS THE
AMPLITUDE OR HOW HIGH DID THE
RESPONSE GO AND LITTLE SQUARES
ON THE BOTTOM IS THE NOISE LEVEL
WHICH IS LOW AND THE SIGNAL
RISES AND GOES UP AS THE
STIMULUS BECOMES MORE VISIBLE.
THIS IS A RESPONSE AND VISUAL
ACUITY.
YOU CAN SEE IT IS ONLY SHIITELY
SIGNIFICANT IN THE THRESHOLD OR
FINAL RESPONSE AND THAT DIPS
DOWN THE REST IS EXACTLY THE
SAME, NOT STATISTICALLY
SIGNIFICANT BETWEEN THE
NEUROTYPICALS AND CVI THOUGH
THERE IS SOME DIFFERENCE.
THEY HAD NORMAL VISUAL ACUITY.
WE EXPECT IT TO BE NORMAL.
YOU CAN SEE THIS IS A DISPLACE
MANY.
WHAT OTHER ACUITIES CAN YOU SEE
IN THE STRAIGHT LINE?
THE NEXT ONE IS ABSOLUTE MOTION
AND THE SIDE ELECTRODES DON'T
RECORD BECAUSE IT'S PROCESSED IN
THE BACK IN THE VISUAL CORTEX.
THERE'S NO DIFFERENCE IN THE TWO
GROUPS OF CHILDREN.
IF YOU LOOK AT THE QUESTION THIS
WAS HIGH SCORING.
MOTION DEFICITS WAS HIGH SCORING
IN THE INVENTORY.
AND HERE YOU CAN SEE THE
COMMONIST PROBLEM THE 33
CHILDREN HAD WAS TO FIND
SOMETHING UP A CROWDED PLACE AND
THE CVI CHILDREN ARE NOT
RESPONDING.
AND THIS IS NOT ABOVE IT REPEATS
ITSELF AND WE DON'T HAVE THE
DIFFERENCE BETWEEN THE TWO EYES.
AND THE HIGH VISUAL AND THE
CORROBORATION OF THOSE AFFECTED
AND PRESERVED.
AND FOR THE DIAGNOSIS OF HIGH
VISUAL FUNCTION DEFICITS NOT
CVI.
THE CALL IN THE DIAGNOSIS OF
CVI.
HOPEFULLY WE CAN PRESENT IN THE
NEXT FEW MONTHS AND MULTIPLE
FEATURES WE HAVE IN THE APP IS
IDEAL FOR RESEARCH STUDIES AND
AS ONE SHOWN EARLIER IN THE
MODEL.
THANK YOU VERY MUCH.
THERE'S BEEN A TEAM INVOLVED IN
THE WORK AND THE STIMULI WAS
DONE AS A TEAM AND PARTICIPANTS
WERE CHILDREN AND WE HAVE AN
ACTIVE PARENT DISCUSSION GROUP
RUN BY A PARENT AND CVI AND THEY
WERE HELP ED THANK YOU VERY MUC.
>> THANK YOU.
NEXT WE'LL HAVE DR. SHAH TALKING
ABOUT CVI WITH OCULAR
COMORBIDITIES.
HE'S ASSISTANT PROFESSOR IN THE
DIVISION OF OPHTHALMOLOGY AND
PRACTICES AT CINCINNATI
CHILDREN'S HOSPITAL MEDICAL
CENTER.
>> HELLO.
GOOD AFTERNOON, EVERYBODY.
I HOPE NOBODY'S IN A FOOD COMA
AT THE MOMENT.
I AM A GIANT BRONZE MAN WITH A
BOW TIE AND A BLUE SUIT AND I'M
ACTUALLY SMALL, BROWNISH AND BOW
TIE WEARER, BLUE SUIT.
SO THIS IS -- IT'S FUNNY.
I JUST LISTENED TO THE PREVIOUS
TWO TALKS WHICH ARE EXCELLENT
AND TALK ABOUT CVI AND OCULAR
COMORBIDITIES.
HERE'S MY FINANCIAL DISCLOSURES
NOT RELEVANT TO THIS TALK.
I'VE BEEN TASKED TO DESCRIBE
COMMON OCULAR COMORBIDITIES THAT
PRESENT IN CHILDREN WITH CVI.
I BROUGHT THIS UP IN FOUR
SECTIONS.
I KNOW WE HAVE PEOPLE FROM SO
MANY DIFFERENT LEVEL AND TAKE
CARE OF OUR CHILDREN WITH CVI.
MY GOAL FOR THIS WAS TO BRIDGE
THAT DIVIDE AND TALK ABOUT THE
OCULAR COMORBIDITIES.
ONE IS AFFERENT SYSTEM OUT TO
THE RETINA AND OPTIC NERVE AND
EFFERENT SYSTEM AND OCULAR
DYSMOTILITY AND STA BIS MUSS AND
REFRACTIVE ERROR AND
ACCOMMODATION OF DYSFUNCTION AND
A FOURTH IS CONGENITAL OCULAR
ABNORMALITIES ASSOCIATED WITH
MALDEVELOPMENT OR GENETIC
ETIOLOGIES.
STARTING WITH THE RETINA AND
OPTIC NERVE DISORDERS OF THE
AFFERENT VISUAL PATHWAY.
AND TALKING ABOUT ANTERIOR
PATHWAY DYSFUNCTION AND WHEN YOU
TALK ABOUT SEQUELAE PREMATURITY
AND VISUAL IMPAIRMENT WE SEE
WITH PREMATURITY POSTERIOR
PATHWAYS AND THESE ARE
ASSOCIATED WITH CVI.
AND I WANT TO TAKE A MOMENT TO
TALK ABOUT ROP RETINOPATHY
PREMATURITY AND THE VESSELS.
IT'S REALLY AN ISSUE WITH
ABNORMAL NEOVASCULARIZATION AND
THERE'S ENOUGH NUANCES FOR THE
PUBLIC TO KNOW AND THERE'S WAYS
TO CLASSIFY THIS IN TERMS OF THE
SEVERITY OF RETINOPATHY OR
PREMATURITY BASED ON THE
LOCATION OF WHAT WE CALL THE
AVASCULAR AND VASCULAR ZONE.
WE HAVE TO THE OPTIC NERVE AND
THIS RETINA AND WHERE THE IMAGES
FALL ON THERE AND THEY ARE
SENDING LITTLE WIRES AND THE
OPTIC NERVE GOES TO THE BRAIN
AND OCCIPITAL LOBE.
YOU CAN SEE WHERE THE HIGH REAL
ESTATE VISION AND IF YOU HAVE
ABNORMAL VESSELS CLOSER TO THIS
LOCATION IT'S MORE CONCERNING
AND SOME OF THECAL COMPLICATIONS
MACULAR DRAGGING IF THEY DRAG
THE HIGH REAL ESTATE AREA AND
HIGH MYOPIA AND STRABISMUS WHICH
IS OCULAR MISALIGNMENT.
SO THERE'S A LOT OF DESCRIPTION
FOR ROP.
LESS WHEN YOU TALK ABOUT CVI.
AND ONE STUDY WAS EARLY
TREATMENT OF ROP STUDY WHICH HAD
342 ROP CHILDREN.
THANE SUBSET THEY LOOKED AT
CHILDREN WHO HAD SEVERE VISUAL
IMPAIRMENT AND SUBSET INCLUDES
64 IN THE GROUP AND HAD SIX
YEARS OF FOLLOW-UP TO SAY THEY
HAD SEVERE VISUAL IMPAIRMENT AND
HOW MANY WERE ASSOCIATED WITH
THE CVI DIAGNOSIS.
THERE'S ISSUES WITH THE STUDY IN
TERMS OF WHAT WOULD WERE THE
DIAGNOSTIC CRITERIA BUT IN THAT
GROUP THEY ONLY NOTICED 7% AT
CVI IN TERMS OF THE ROP
PATIENTS.
SO OTHER FINDINGS IN THE RETINA
WE WANTED TO TALK ABOUT
NEURODEGENERATIVE FINDINGS.
AND THESE ARE MY PATIENTS,
INHERITED GENETIC DYSTROPHIES
CAN OCCUR IN THIS GROUP AND
MACULAR DYSTROPHY.
THIS IS TOXICITY.
IN UTERO DRUG EXPOSURE AND WHERE
THE MACULAR WOULD BE AND WE CALL
THAT MACULAR COLOBOMA AND THIS
IS RETINITIS PIGMENTOSA AND YOU
CAN SEE THERE'S AND WE CAN
IMABLE THE RETINA AND SEE THIS
RING WHICH TELLS US THERE'S
DAMAGE MORE SO ON THE PERIPHERY
OF THE RETINA VERSUS WHAT'S
BEING SPARED AT THE MACULA.
.
AND WE TALKED ABOUT THE
CHILDREN, 50% TO 70% DEPENDING
ON THE STUDIES HAVE SESURE
HISTORY.
MANY ARE ON MEDICATIONS FOR
MULTIPLE MEDICATIONS AND THIS IS
A PICTURE OF A CHILD ON MULTIPLE
SEIZURE MEDICATIONS AND IN
PARTICULAR YOU CAN SEE THERE'S A
SIGNIFICANT AMOUNT OF PERIPHERAL
RETINAL DEGENERATION.
SOMETIMES WE CAN SEE THE RETINAL
FINDINGS IN OUR CHILDREN.
I'LL TALK A LITTLE BIT ABOUT
RETINA AND OPTIC NERVE
DEVELOPMENT.
THIS IS A PICTURE SHOWING EARLY
AND FIRST TRIMESTER TALKING
ABOUT THE DEVELOPMENT OF THE
VISUAL SYSTEM.
YOU HAVE THIS OPTIC VESSEL AND
THERE'S A CLOSURE OF THE FISSURE
RIGHT HERE.
THIS IS THE OPTIC STALK AND THIS
WOULD BE THE EYE DEVELOPING AND
THIS FISSURE WHICH CLOSES AND
WHEN IT CLOSES IT CLOSES
INTRANASALLY AND GET DEFICITS
WITHIN THE OPTIC NERVE AND CAN
MOVE TO THE FRONT PART AND EYES
DIVING IN THE ANTERIOR AND
POSTERIOR SEGMENT.
THIS COULD HAPPEN WITH ISSUES OF
MALDEVELOPMENT AND TALKED ABOUT
A COUPLE IN TERMS OF IN UTERO
DRUG EXPOSURE AND ANY GENETIC OR
CHROMOSOME ABNORMALITIES WHICH
MAY CAUSE ABNORMALITY OF THE EYE
AND THIS IS AN OPTIC NERVE.
THE INFERIOR NASAL ASPECT
INCOMPLETE CALENDAR AND
SOMETIMES IT INVOLVES THE OPTIC
NERVE AS IN THIS CASE DOWN HERE
AND YOU HAVE THE COLOMBOMA AND
YOU CAN LEAD TO RETINAL DET
DETACH
DETACHMENTS.
THE MOST COMMON OPTIC NERVE
FINDING ABNORMALITY FINDING IS
OPTIC NERVE HYPOPLASIA.
IT'S THOUGHT TO HAPPEN IN THE
FIRST TRIMESTER.
THE PICTURE I SHOWED BEFORE
THEY'RE SENDING AXONS AND IF
THERE'S AN ISSUE IN THEIR
MIGRATION AND A LACK OF RETINAL
GANGLION CELLS THE NERVE IS
SMALLER.
YOU HAVE THIS SMALLER OPTIC
NERVE, YOU CAN SEE THAT HERE AND
YOU CAN MAKE OUT THE YOIT LINE
THE RING AROUND THIS IN TERMS OF
THE SCLERA WHERE THE OPTIC NERVE
WOULD HAVE BEEN IF IT MADE THE
MIGRATION.
THIS IS ASSOCIATED WITH IN UTERO
DRUG EXPOSURE AND OTHER ISSUES
AS WELL.
ONE WE TALKED ABOUT.
THE STUDIES HAVE SHOWN 16% TO
42% HAVE AN OPTIC NERVE POWER
ATROPHY.
I'LL MAKE SEVERAL POINTS USING
THE SAME FOUR PICTURES.
IT'S THE MORPHOLOGICAL SEQUELAE
OF INSULTS THAT IMPACT THE BASAL
GANGLION CELLS AND AXONS AND
THINNING OF THE NEURAL TISSUE
AND ARCHITECTURE.
THE CHANGE IN WHAT IS NOTED IN
THE TISSUE.
PALLOR CAN BE SEEN IN LOCATION
OR THE DEGREE YOU SEE AND YOU
MAY HEAR PEOPLE SAY ONE POWER
AND FOUR POWER AND THE MORE
POWER THE THOUGHT OF LESS
GANGLION CELLS AND YOU CAN SEE
THIS IS JUST FROM THE LEFT EYE
AND AND YOU SEE THE AND YOU SEE
THE DIFFUSED POWER AROUND THE
OPTIC NERVE.
GREATER LOSS OF AXONS IN THIS
DIFFUSED VERSUS THE PALLOR POWER
AND THIS IS AN EXAMPLE HERE.
THIS IS THIS NERVE.
SOMETHING HAPPENED TO THIS NERVE
THAT CAUSED IT TO BE
HEMORRHAGING AND INFLAMED AND
DEVELOPED INTO THE LOSS.
CONGENITAL SOMETHING ALONG THE
DEVELOPMENT CAUSED THE CELLS TO
BE SYMMETRIC.
AND INTERESTINGLY WE FIND OUT
THE COLOR VISION IS SPARED SO
OUT OF PROPORTION WITH THE
DEGREE OF POWER.
ANOTHER WAY TO THINK OF IT THAT
COMES UP COMMONLY IN CVI IN
TERMS OF WHERE THE ETIOLOGY
AFFECTED THE LOSS OF THE RETINAL
GANGLION CELLS AND SOMETHING
MORE ANTERIOR OR POST ANTERIOR
AND TRANSSYNAPTIC DEGENERATION
AND TRAUMA THAT HAPPENED IN
FRONT OF THE EYE AND WE SEE
DEGENERATION AND AFFECTING AND
WHERE WE GET THE OPTIC NERVE
POWER.
IN CVI THERE'S POSTERIOR
INVOLVEMENT AND IT'S THE LACK OF
INFORMATION THAT COMES BACK TO
THE RETINAL GANGLION CELLS THAT
IS THE CAUSE OF THE POWER.
>> ONE MINUTE.
>> OKAY.
THAT'S FAST.
I CAN'T DO THAT IN ONE MINUTE.
I'LL NEED TWO.
OPTIC NERVE HYPOPLASIA LEADS TO
OPTIC FIELD IMPACT AND CAN
IMPACT THE OVER ALL VISUAL
FUNCTION ASSESSMENT AND CAN
ELUCIDATE VISUAL PREFERENCES AND
UNDERSTANDING THE VISUAL FIELDS
CAN BE A KEY.
I WANT TO TALK ABOUT THE OCULAR
DYSMOTILITY STRABISMUS.
I'LL MOVE FAST.
THIS -- I LOVE THIS VIDEO
BECAUSE IT SHOWS ASPECTS-WE KNOW
IN CVI PATIENTS IT'S FROM 11% TO
22% DEPENDING ON YOUR STUDY THIS
CHILD HAS VERTICAL NYSTAGMUS AND
THERE'S QUICK PSYCHOTIC
INTRUSIONS AND THERE'S NIS AND
LOOKING AT PROXIMAL DEVIATIONS
AND ALSO SHOWN IN THE EXAMPLE.
I'LL PASS THIS SLIDE BUT THIS IS
STALKING ABOUT DIFFERENT EYE
HOMES INTRUSIONS AND WE SEE THIS
IN TWO TO FOUR MONTHS IN
CHILDREN AND COULD BE IDIOPATHIC
AND THE THOUGHT IS THERE'S OPTIC
NERVE FINDINGS OR DUE TO RETINA
AND OPTIC NERVE ISSUES.
IT'S HORIZONTAL AND YOU CAN SEE
THERE WAS A HEAD POSITION.
THAT'S IMPORTANT WHEN YOU THINK
OF HEAD PREFERENCES AND WHERE
THEY'RE FIXATING.
THIS OCULAR MOTOR APRAXIA AND
THOUGHT TO BE DUE TO PERFORMANCE
OF UNABLE TO FIXATE ON TARGET
YOU SEE THE HEAD THRUST AND
THOUGHT TO IMPROVE WITH
DEVELOPMENT.
STRABISMUS WAS TO HEAR THE
DISCUSSION AND EYE CROSSING IN
AND OUT AND STRABISMUS IS
COMMON.
YOU CAN HAVE DISKINETIC
MOVEMENTS AND ESOTROPIA AND EYES
CROSSING IN AND INSTANTANEOUSLY
THE EYE GOES OUT AND BACK IN.
IT'S A COMPLICATED WHEN YOU
THINK OF FIXING THE MISALIGN
MANY.
WE WANT TO FOLLOW THE CHILDREN
CLOSELY AND ONCE YOU HAVE A
STABLE DEVIATION THE TIME TO
MAKE SURGICAL CORRECTION.
>> YOU NEED TO WRAP UP.
>> I HAVE THREE MORE SLIDES.
REFRACTIVE ERROR EXISTS AND IS
SIGNIFICANT WITHIN OUR CVI
POPULATION 79% IN SOME OF THE
STUDIES.
THE MOST COMMON IS COMPOUND
MYOPIC ASTIGMATISM AND TREAT THE
RETRACTOR.
A STUDY SHOWED PEOPLE WITH
SEVERE CVI LOW VISION FUNCTION
AND SIGNIFICANT REFRACTORY ERROR
WERE COMMONLY NOT PRESCRIBED
GLASSES SO PLEASE PRESCRIBE YOUR
GLASSES.
SO THIS LAST SECTION IS
CONGENITAL OCULAR ABNORMALITIES.
TWO STUDIES I'D LIKE TO POINT.
A STUDY OF GREAT REVIEW DONE BY
DR. CHANG AND THEY LOOKED AT
WHAT SYNDROMES WERE ASSOCIATED
WITH CVI AND THIS IS A GREAT
LIST.
THIS IS A STUDY WE DID IN WHICH
WE LOOKED RETROSPECTIVELY AT 265
KIDS AND WHAT THEIR
NEUROGENETICS WAS IN THEIR
ASSESSMENT AND WERE ABLE TO
IDENTIFY GENES THAT WERE NOT
KNOWN.
THIS MIGHT BE A STEPPING STONE
FOR THINKING ABOUT GENES AND
THEIR ASSOCIATED OCULAR FINDINGS
IN OUR CLINICS.
THIS LAST SLIDE IS CVI WITH
METABOLIC AND GENETIC DISORDERS
THAT ALSO HAD OCULAR
COMORBIDITIES.
YOU CAN HAVE INTERIOR SEGMENT
ISSUES AND DYSGENESIS AND I HAD
THE OPPORTUNITY TO TAKE CARE OF
A GROUP OF KIDS WITH THE FNR21
KIDS AN ATROPHY SYNDROME.
THEY HAD IC NERVE ISSUES AND DID
A STUDY AND LOOKED AT THEIR MRIs
AND 18 OF 21 FOUND MESSIAL
TEMPORAL DYS-GYRIA.
AND MOST OF THE CVI AND OCULAR
ABNORMALITIES ARE TREATABLE
REFRACTIVE ERROR AND
ACCOMMODATIVE DEFICIENCY AND
NYSTAGMUS AND STRABISMUS.
I APPRECIATE THE EXTRA TIME.
>> THERE'S NO TIME FOR PANEL
QUESTIONS BUT FEEL FREE TO ASK
THE PREVIOUS THREE SPEAKERS
QUESTIONS DURING THE BREAK.
>> THANK YOU.
WE'RE IN SECTION 2, VISUAL
FUNCTION AND FUNCTIONAL VISION.
THE NEXT SPEAKER IS DR. BAUER AT
THE GORDON CENTER FOR MEDICAL
IMAGING DEPARTMENT OF RADIOLOGY
AND THE DEPARTMENT OF
OPHTHALMOLOGY AT HARVARD MEDICAL
SCHOOL AND MASSACHUSETTS GENERAL
HOSPITAL.
SHE WAS A FORMER FELLOW AND
HAPPY AND PROUD SHE NOW LEADS
HER OWN INDEPENDENT LINE OF
RESEARCH.
>> FIRST, THANK YOU FOR THE
INVITE.
IT'S A HUGE HONOR TO BE HERE
AMONGST ALL OF YOU EXPERTS.
SO THANKS ALSO TO THE OTHERS
SUMMARIZING MY SLIDES.
MY FIRST THREE SLIDES HAVE BEEN
TALKED ABOUT BUT NOT JUST
CHALLENGING WITH VISUAL FUNCTION
AND FUNCTIONAL VISION WHICH CAN
BE HETEROGENOUS WITH OTHER
VISUAL PROCESSES STARTING TO BE
MORE RECOGNIZED.
SO WE HAVE HETEROGENOUS
PRESENTATIONS IN MATERIALS OF
THE LEVEL OF VISUAL ABILITIES.
AS WELL AS HETEROGENEITY IN
TERMS OF WHAT THE BRAINS LOOK
LIKE CLINICALLY.
BEFORE I FORGET I'M A TALL
SKINNY CAUCASIAN FEMALE WITH
MEDIUM LENGTH BROWN HAIR.
SO HERE WE HAVE BRAIN SLICES
FROM FIVE INDIVIDUALS FROM CVI
AND THEY SHOW A RANGE OF OBVIOUS
BRAIN ABNORMALITIES.
THE ONE ON THE -- HOW DO I DO
THIS?
THE ONE ON THE LEFT AND RIGHT
ARE OBVIOUSLY DAMAGED AND HAVE
OBJECTION INJURY WHERE THE
OTHERS ARE MORE SUBTLE.
I THINK THAT'S IMPORTANT TO
RECOGNIZE THAT NOT ONLY IS A NUL
MRI NOT EXCLUSIVE OF A DIAGNOSIS
OF CVI BUT IT'S AN IMPORTANT
POINT.
SO ONE THING I MENTIONED EARLIER
WAS THE GRADING SCALE.
THIS IS AN EXAMPLE FROM OUR LAB.
IT HAPPENS TO BE ON THE RIGHT WE
HAVE QUANTITATIVE LESION
MAPPING.
WE CAN GO THROUGH AN MINIMALLY
TRACE DELETIONS OR USE AUTOMATED
APPROACHES.
FROM THAT, WE CAN THEN LOOK AT
THE DISTRIBUTION OF THE LESION
OF VOLUMES OF OUR PARTICIPANTS
WITH CVI AND SEE SOME HAVE LIKE
PRETTY LARGE AND EXTENSIVE WHITE
MATTER INJURIES AND OTHERS DO
NOT HAVE ANY OBVIOUS WHITE
MATTER DAMAGE.
NOT HAVING WHITE MATTER DAMAGE
MEANS YOU DON'T HAVE VISIBLE
WHITE MATTER DAMAGE WITH THE
FLARE SCAN IT DOESN'T MEAN IT'S
NOT IMPACTED BY DIFFUSION OR
SOMETHING LIKE THAT.
WHAT'S THE RELATIONSHIP THEN
BETWEEN THE SCANS AND VISUAL
PERCEPTION AND ABILITIES?
SO THERE'S BEEN A COUPLE OF
STUDIES OVER THE YEARS THAT HAVE
DONE THIS.
ONE WAS BACK IN 96 AND RECENTLY
WITH COLLEAGUES.
WE WANTED TO BE MORE
QUANTITATIVE AS GLEN MENTIONED
JUST SCIENTISTS AND MEASURE
THINGS.
WE DECIDED TO LOOK AT VOLUME OF
SPECIFIC AREAS IN THE CORTEX THE
OUTER SHEATH OF GRAY MATTER
AROUND THE BRAIN AND RELATED
THAT TO MEASURES OF CVI
QUESTION.
SO WE LOOKED GLOBALLY AT THE
TOTAL NUMBER OF REPORTED
DIFFICULTIES ON THAT CVI
QUESTIONNAIRE AND THE INTERIOR
SINGULAR CAME OUT AS BEING
SIGNIFICANTLY CORRELATED.
THESE ARE ALL THE CORRELATIONS
ARE PARTIAL CORRELATIONS SXRFTED
FOR AGE AND VISUAL.
AND WHEN WE GO THROUGH AND LOOK
AT THE SPECIFIC FACTOR BREAKDOWN
WITHIN THE QUESTIONNAIRE WE SEE
THREE OF THE FACTORS WERE
SIGNIFICANTLY CORRELATED WITH
SPECIFIC VOLUMES AND OBJECT AND
FACE PROCESSING IMPAIRMENTS
ASSOCIATED WITH THE GUI GYRUS
AND RELATED TO THE INTERIOR
SINGULAR CORTEX WHICH IS
INVOLVED IN NETWORKS AND
ANXIETY-RELATED BEHAVIORS WERE
RELATED TO PRIMARY VISUAL CORE
VOLUME .
I'M INTERESTED IN THE THALAMUS
IT'S IMPORTANT FOR MODULATING
THE VISUAL INFORMATION THAT
COMES INTO THE BRAIN SO WE CAN
ACT ON IT.
FOR THOSE WHO DON'T KNOW WHAT
THE THALAMUS IS IT'S SMACK IN
THE MIDDLE OF THE BRAIN.
ON THE LEFT IS EXCITED AND TWO
INDIVIDUALS WITH CVI IN THE
MIDDLE AND I'VE HIGHLIGHTED THE
THALAMUS IN YELLOW.
WHEN WE QUANTIFY THE THALAMUS AS
A WHOLE AND COMPARE THAT BETWEEN
CVI AND CONTROL GROUPS ADJUSTING
FOR HEAD SIZE THERE'S A
SIGNIFICANT REDUCTION IN THE
GLOBAL VOLUME OF THE THALAMUS IN
CVI COMPARED TO CONTROLS AND
NOTICE THE HETEROGENEITY.
IT'S NOT ALL INDIVIDUALS WITH
CVI BUT SOME ARE MORE IMPACTED
THAN OTHERS.
THERE WERE TWO SIGNIFICANT
RELATIONS I PICKED AT RANDOM.
OBJECT AND FACE RELATED TO THE
CENTRAL LATERAL THIS WILL MUSS
AND THE CENTRAL HUB WAS
ASSOCIATED WITH ATTENTION AND
THE MID LEVEL VISUAL PROCESSES.
FOR THIS REASON THERE'S AN
ONLINE TEST FOR LIKE A SCREEN
TEST FOR MID LEVEL VISION.
THE PERFORMANCE ON THAT TASK WAS
RELATED TO ANTERIOR THALAMIC
VOLUMES AND REDUCED VOLUMES WERE
ASSOCIATED WITH CHALLENGE WITH
MID LEVEL PROCESSES.
I'LL TALK ABOUT DORSAL STREAM
AND THEN VISUAL ATTENTION IN
CVI.
I'LL FOCUS ON PERCEPTION FOR THE
DORSAL STREAM AND IT'S VERY
COMMONLY REPORTED IN THE
LITERATURE TO BE CHALLENGING FOR
INDIVIDUALS AT RISK FOR CVI.
I THINK IT'S ALSO IMPORTANT TO
RECOGNIZE THERE ARE MULTIPLE
TYPES OF VISUAL MOTION
PERCEPTION.IT'S NOT JUST ONE
THING.
IN 2009 COLLEAGUES IN ITALY
LOOKED AT THREE DIFFERENT TYPE
OF MOTION PERCEPTION.
TRANSLATIONAL LEFT-RIGHT
CIRCULAR MOTION, AND THEN THE
FOURTH CATEGORY IS STATIC FORM.
THEY DID THIS IN KIDS WITH PBL
AND PRE TERMS AND BIG RISK
FACTORS FOR CVI AND IN CHILDREN
BORN AT FULL TERM.
THEY FOUND FOR EACH OF THE FOUR
DIFFERENT OUTCOME THE
SIGNIFICANT GROUP WITH PDL DID
SIGNIFICANTLY MORE POORLY ON THE
TASKS ON ALL OF THEM THAN
CONTROLS.
SO IN 2012 WEINSTEIN AND
COLLEAGUES LOOKED AT THE IMPACT
OF THE SPEED OF THE MOTION IN
INDIVIDUALS WITH CVI COMPARED TO
BOTH CONTROLS AND THOSE WITH
STRABISMUS AND SPECIFICALLY FOR
SLOW MOTION THE CVI GROUP WAS
IMPACTED AND LOOKING AT THAT
RADIAL MOTION.
SO OPTIC FLOW.
AS WE MOVE THROUGH SPACE GETTING
AT LIKE HOW THE VISUAL FIELD
MOVES AS WE MOVE AROUND.
AND WE FOUND THERE WAS A
SIGNIFICANT IMPAIRMENT IN CVI
COMPARED TO CONTROLS.
AND THIS FIGURE ALSO SHOWS
NICELY THE SPREAD IN BEHAVES.
AGAIN, IT'S NOT ALL KIDS WITH
CVI WERE IMPACTED BUT AS A WHOLE
THE GROUP HAD A HIGHER THRESHOLD
THAN CONTROL.
THE BEST CVIs PERFORMED BETTER
THAN THE WORSE CONTROLS IF THAT
MAKES SENSE.
THE FINAL ASPECT OF MOTION IS
BIOLOGICAL MOTION.
THIS IS ALSO SOMETHING KNOWN TO
BE IMPACTED IN INDIVIDUALS AT
RISK FOR CVI.
THERE'S BEEN A FEW STUDIES
LOOKING AT THIS IN KIDS WITH
PBL.
THE EXTENT OF THE IMPAIRMENT
RELATED TO THE SEVERITY OF THE
PBL.
WHY IS THIS HAPPENING?
THE TOP IMAGE FIRST.
THIS IS AN INFLATED BRAIN.
IMAGINE YOU BLEW UP YOUR LEFT
HEMISPHERE LIKE A BALLOON.
THE COLORED BLOCKS REPRESENT
DIFFERENT BRAIN REGIONS.
THE TOP IS THE MIDDLE OF THE
BRAIN FROM THE INSIDE AND
REPRESENT EARLY VISUAL AREAS V1
AND V2 AND V3 AND THE LATERAL
SURFACE OF THE LEFT HEMISPHERE
AND THE GREENS AREAS ARE M2
IMPORTANT FOR MOTION AND THE
OTHER THREE ARE IN THE PARIETAL.
THE STUDY WANTED TO LOOK AT IS
IT CHANGES IN EARLY VISUAL AREAS
WITH THE PERFORMANCES?
THEY LOOKED AT CORTICAL
THICKNESS AND FOUND IT WAS
EARLIER VISUAL AREAS DRIVING THE
RESPONSE.
WE LOOKED AT THE VOLUME
PATHWAYS.
AND LOOKING AT THE FUNCTIONAL
RESPONSE WITHIN THESE AREAS IT
WAS AREA MT AT LOW THRESHOLDS
WHERE THE BRAIN ACTIVATION
PATTERS WERE REDUCED COMPARED TO
COULD BE CONTROLS AND DUE TO
FACILITATION EFFECT IN THE
RECEPTIVE FIELDS RESPONSE
OPPOSED TO THE TYPICAL
EXPRESSION EFFECT YOU WOULD
EXPECT.
SWITCHING GEARS TO THE VENTRAL
STREAM.
IN THE STUDY THEY DIDN'T SEE
MANY FACE AND RECOGNITION
CHALLENGES WHICH I FIND OF
INTEREST.
IN OUR OLDER INDIVIDUALS WE
FOUND THE OPPOSITE WHERE WE
SPECIFICALLY TARGET THE FOUR
FACE QUESTIONS IN THE INVENTORY
AND FOUND THAT A LARGE
PROPORTION OF THOSE WITH CVI
SOMETIMES OR ALWAYS HAD
DIFFICULTY WITH ALL FOUR OF THE
FACE-RELATED QUESTIONS AND ALL
THOSE WITH CVI IN THE STUDY
ALMOST ALWAYS HAD DIFFICULTY
WITH AT LEAST ONE I'D ENCOURAGE
YOU TO DEFINITELY TEST THIS OR
THINK ABOUT IT IN WERE KIDS.
THE LEFT IS CONTROL AND THE
RIGHT IS SOMEONE WITH CVI.
WHAT ARE CORRELATIONS THEN?
WE LOOKED AT AXIAL DIFFUSIVITY
AND THIS MARKER HAS BEEN RELATED
TO AXIAL ENTRY AND THEY WERE
ASSOCIATED WITH WORSE FACIAL
RECOGNITION TASK WITH
INDIVIDUALS WIN CVI AND FOR
OBJECT RECOGNITION IT WAS
ASSOCIATED WITH PERFORMANCE ON
THE BATTERY IT'S REPORTED LOTS
OF TIMES BY PARENTS AND
INDIVIDUALS WITH CVI AND
CONSISTENTLY BEEN REPORTED NOT
JUST ACROSS DIFFERENT TASKS BUT
AGE RANGES AND RESPONSE TYPES.
THERE'S THREE EXAMPLE STUDIES
FROM LOT V WE DID TOGETHER AND
THE ONE IN THE MIDDLE IS
COURTESY OF A GROUP KIND ENOUGH
TO SHARE THESE PICTURES WITH ME.
THIS IS A MOTOR RESPONSE FOR
THAT VERSION.
THEY USE EYE TRACKING AND THIS
IS IN YOUNGER CHILDREN.
OURS WAS IN OLDER CHILDREN AND
YOUNG ADULTS.
THERE'S A TRACKING AND NOT ALL
THE KIDS KNOW THEIR LETTERS.
IT'S BLUE AND RED CIRCLES AND
SQUARES AND THEN OTHER VIRTUAL
ENVIRONMENTS.
VIRTUAL TOY BOX AND THERE'S A
VIRTUAL TASK AND WHEREBY THOSE
WITH CVI SHOWED IMPAIRMENTS ON
RESPONSE TIME, ACCURACY AND SO
ON AND SO FORTH.
SO FAR AS THE EYE GAZE WAS
RELATIVELY CONSISTENT ACROSS THE
TASKS.
AND ONE THING TO POINT OUT IS
THAT THE DATA FROM THE DUTCH
GROUP ALSO SHOWS THIS WAS IN THE
CVI GROUP NOT ONLY COMPARED TO
CONTROLS BUT CLINICAL CONTROLS
AND ADHD AND DYSLEXIA.
WHY THIS?
AND AND THERE ARE TWO ATTENTION
NETWORKS IN THE BRAIN, THE
DORSAL ATTENTION NETWORK
TOP-DOWN CONTROL OF ATTENTION
AND THE NETWORK MORE LIKE A
SUBCONSCIOUS BOTTOM UP AND
THEY'RE IMPORTANT FOR FINDING AN
OBJECT AND DISENGAGING TO FIND A
NEW STIMULUS.
WE NEED THEM BOTH TO NOT JUST
HAVE GOOD CONNECTIVITY WITHIN
THE NETWORKS AND TALK TO EACH
OTHER WHICH THEY DO.
AND THESE ARE CONNECTED THROUGH
SUBDIVISIONS OF THE SLF AND
PREVIOUS DATA AND THIS IS RECENT
DATA WE'RE STILL WORK ON BUT
WANTED TO SHARE IT WITH YOU GUYS
AND THINK IT HAS IMPLICATIONS
POTENTIALLY WITH THE MECHANISMS
BEHIND THIS.
AND WITHIN VISUAL AREAS FOR
CONTROLS IN BLUE AND INDIVIDUALS
WITH CVI IN ORANGE.
THIS IS THE CORRELATION
COEFFICIENT WITHIN NETWORK
CONNECTIVITY AND ACCURACY ON THE
CONJUNCTION SEARCH PARADIGM AND
IN CONTROLS ONLY.
IT WAS SIGNIFICANTLY CORRELATED
AFTER ADJUSTING FOR VERBAL I.Q.
AND AGE WITH NETWORK OF THE
DORSAL AND VENTRAL NETWORKS BUT
NOT CVIs.
WHEN WE LOOK BETWEEN NETWORK
CORRELATIONS WE HAVE TO HAVE
BOTH WITHIN AND BETWEEN
CONNECTIVITY AND COMMUNICATION
TO DO THE TASK.
AGAIN WE SEE THERE'S A DIFFERENT
STORY GOING ON WHERE THE
CONTROLS IS MORE OF THE CORTICAL
CONNECTIONS AND COMMUNICATION
WHEREAS IN THE CVI GROUP IT
TENDED TO BE MORE CORTICAL
CONNECTIVITY ASSOCIATED WITH
ACTIVITY AND WE'RE LOOKING AT
WHAT IS TE BRAIN ACTIVITY AND
PARS THAT OUT.
THANK YOU FOR LETTING ME SHARE
AND THANKS TO THE PARTICIPANTS
AND FAMILIES AND COLLABORATORS.
THANKS.
>> THANK YOU, CORINNA.
WE HAVE DR. PRUSKY IS OUR NEXT
SPEAKER AND WE HAVE A BIT OF A
TECHNICAL CHANGE.
HE'S A PROFESSOR AND LAB
DIRECTOR PHYSIOLOGY AND
BIOPHYSICS BURKE NEUROLOGICAL
INSTITUTE WEILL CORNELL MEDICINE
TALKING ABOUT EYE TRACKING.
>> THIS IS A QUESTION FOR
CORINNA FOR LATER, ONE OF MY
ANSWERS TO WHAT KERRY WOULD LIKE
TO SEE IN A REGISTRY IS WOULD
LOVE TO SEE SOME MAPPING OF
STRUCTURE TO FUNCTION.
WE KNOW THE MRI CAN'T BE MAPPED
DIRECTLY.
TWO QUESTIONS.
ONE, WHAT TYPES OF IMAGING CAN
WE INCLUDE IN A REGISTRY AND
SHARE DATA AND I GUESS IF WE
WERE TO PUT -- IF DIFFERENT
PEOPLE WERE TO PUT IMAGES IN THE
DATABASE COULD YOU CARE ACROSS
MACHINES OR IS THERE SOME
METRICS YOU CAN PULL OUT IN
COMPARING FROM A REGISTRY AND
ANYTHING YOU CAB USE FROM A
DATABASE?
THROW IT OUT FOR DISCUSSION
LATER.
>> THANK YOU.
I'M PLEASED TO BE HERE.
I'M GRATEFUL TO THE ORGANIZER
FOR AN INVITATION AND CHERI.
SHE'S BEEN WITH US A LONG TIME.
THANKS VERY MUCH.
I'M GOING TO TALK ABOUT
OBJECTIVE MEASURES OF VISUAL
FUNCTION IN CHILDREN WITH BRAIN
INJURY.
SO IT PROBABLY COMES AS NO
SURPRISE THAT IN CHILDREN WITH
LIVER FUNCTION RELIES ON
SUBJECTIVE NEURO OPHTHALMALGIC
APPROACH AND THINK THERE'S A WAY
OF APPROVING THE APPROACH.
THE PREMISE IS THERE'S A NEED TO
OBJECTIFY AND QUANTIFY VISUAL
FUNCTION IN BRAIN INJURED
CHILDREN CAN AND CHARACTERIZE
HOW IT CHANGES OVER TIME.
IT'S IMPORTANT WE DO THAT
BECAUSE AS I SAID EARLIER WITH
DEVELOPMENT ISSUES.
IN ORDER TO BETTER DEFINE AND
DIAGNOSIS AND TREAT CVI.
OUR HYPOTHESIS IS THAT THE
OBJECTIVE MEASURES OF VISUAL
FUNCTION CAN BE MADE IN CHILDREN
WITH BRAIN INJURY TO THE
QUANTITATIVE ANALYSIS.
WE LESSLY EVERY DAY LOOK AROUND
AND USING OR EYES AND WE
SOMETIMES THINK OF THE EYE
MOVEMENT SYSTEM AND IT'S BAKED
UP AND DOESN'T MAKE SENSE THE
VISUAL SYSTEM IF YOU DON'T THINK
OF MOVEMENT AND INFORMATION'S
MOVING IN THE WORLD AND RUNS
FROM THE TOP TO THE BOTTOM AND
FRONT AND BACK OF THE BRAIN.
THAT'S WHY VISION IS SO OFTEN
AFFECTED IN BRAIN INJURY.
WE TAKE AN APPROACH FROM LOW
LEVEL INFORMATION UP TO HIGHER
LEVEL AND WE THINK THE EYE
TRACKING CAN ADDRESS THIS.
WE'RE WORKING ON THINGS BELOW
AND ABOVE BUT TODAY I'M GOING TO
SHARE WITH YOU OUR AND AND WE
HAVE A VARIETY OF EYE HOMES THAT
ARE EFFORTLESS.
WE DON'T THINK ABOUT THEM ON A
DAY TO DAY BASIS BUT WE HAVE
SACCADIC MOVEMENTS AND THERE'S
PERIODIC FIXATIONS AND FAST
MOVEMENTS TO GET TO THOSE LACES
AND EYE MOVEMENTS THAT ALLOW US
TO TAKE INFORMATION THAT APPEARS
AND AS IT MOVES WE FOLLOW THAT
TO MAINTAIN THE INFORMATION.
USING THESE SACCADIC EYE
MOVEMENTS WE DEVELOPED VISUAL
FIELD FIXATION MAPPING.
WE PUT INFORMATION INTO KNOWN
PLACES IN THE VISUAL FIELD AND
SINCE WE KNOW WHERE IT IS WE CAN
MOVE IT TO LOCATIONS AND BUILD A
FIELD MAP OF AN INDIVIDUAL
BASICALLY I'LL SHOW IN A SECOND
BASICALLY MAPPING WHERE THEY'RE
ABLE TO SEE AND HOW QUICKLY THEY
CAN MOVE TO THOSE A MOVEMENT SO
FORTH.
WE ALSO HAVE A SPATIAL VISION
TASK OF VISUAL ACUITY AND
SENSITIVITY.
AND IT'S STANDARD AS ANY IS IB
VISION BUT HAS WEAKNESSES.
IT'S A MUCH BETTER APPROACH TO
THIS AND SO WE HAVE DEVELOPED A
TASK ABLE TO MEASURE CONTRAST
SENSITIVITY EVEN IN
BRAIN-INJURED INDIVIDUALS AND IT
INVOLVES WE HAVE A PATCH OF
KNOWN VISUAL FREQUENCY AND
CONTRAST AND JUDGE HOW WELL YOU
FOLLOW THAT.
YOU'RE FOLLOWING MAKES IT
DISAPPEAR IN FRONT OF YOU.
IT CAN HAPPEN QUICKLY AND
ACCESSIBLE TO MANY INDIVIDUALS.
THIS IS CHILDREN'S HOSPITAL.
THIS IS A TYPICAL TESTING
CENTER.
HERE'S OUR COMPUTER.
THERE'S A SUBJECT IN THEIR BED
AND WE HAVE DONE THIS OVER THE
PAST THREE AND A HALF TO FOUR
YEARS.
HERE'S A QUICK EXAMPLE OF WHAT
THIS LOOKS LIKE.
THIS IS A TASK.
YOU ZAP OBJECTS ON THE SCREEN.
KIDS LOVE THIS BECAUSE MANY ARE
BED RIDDEN SO IT'S A REAL FORM
OF ACTIVITY THEY CAN PARTICIPATE
IN.
THIS IS SACCADIC INDUCING TASK
AND THE VISUAL FIELD TASK THAT
COMES UP.
THE SMOOTH TRACKING TASK.
WE HAVE CUSTOMIZATION AND CAN
MOTIVATE INDIVIDUALS OF VARYING
CAPACITIES.
THIS IS RAW DATA FOR SACCADE AND
VISUAL FIELD AND THE TASK FOR
SPATIAL VISION COMES IN THREE
FORMS.
THERE'S A FULL FIELD OF THOSE
WHO CAN'T FOLLOW I CHANGES IN
FRONT OF YOU.
HERE'S THE SINGLE BALL TASK
COMING UP HERE.
SAME IDEA.
YOU HAVE TO PROCESS AND THERE'S
A MULTI-GOAL TASK AND KIDS LIKE
THIS BECAUSE IT'S VERY FUN.
YOU TAKE ONE BALL AT A TIME.
YOU GO UNTIL YOU MAKE IT
DISAPPEAR.
THAT'S THE GOAL.
AGAIN, THE SCORING SYSTEM ALLOWS
KIDS DO THIS REGULARLY.
THERE'S GREAT MOTIVATION.
IT'S FUN.
BROTHERS AND SISTERS GET
INVOLVED OFTEN.
THIS IS THE CONTRAST SPECIFICITY
YOU'LL SEE HERE.
SO WHAT DO THE DATA LOOK LIKE
THAT COME OFF THIS?
THIS IS AN EXAMPLE OF SACCADIC
DISTRIBUTION AND A TYPICAL BOW
TIE LIKE OR MORE SA SACCADE AD
MANY WHO ARE NON-COMMUNICATIVE
HAVE NORMAL DISTRIBUTION OF
SACCADES AND YOU CAN HAVE
INDIVIDUALS THAT HAVE ANYSTAGMUS
AND THE DEGREE AND SO FORTH.
THERE'S VISUAL MAPPING.
IN WHITE IS GOOD AND YOU SEE
INDIVIDUALS WITH HOLE IN THAT
FIELD AND ALL THIS IS
QUANTITATIVE AND THIS IS A FULL
FIELD TASK I TOLD YOU AND THE
BALL TASK.
WE CAN GENERATE EVEN IN CHILDREN
MANY PEOPLE WILL HAVE THEIR
CONTRAST MEASURED BUT WE CAN DO
THAT REGULARLY IB CHILDREN.
-- IN CHILDREN.
SO, HOW DO WE EXTRACT DATA FROM
THIS THAT'S MEANINGFUL AND
USEFUL?
WE NEED TO REDUCE THE
HIGH-DIMENSIONAL DATA TO
IMAGINABLE FORM.
WE START WITH AN ANALYSIS AND
FROM MANY EYE HOMES THERE'S
MOVEMENTS ALONG THE HORIZON AND
UP AND DOWN AND DIAGONAL AND SO
FORTH AND CONFIRMED THE
PRELIMINARY PCA AND I WON'T SHOW
THE DATA RIGHT NOW.
WE HAVE BIAS SCORES AND THIS IS
THE SORT OF THING WE GET.
I'VE ALWAYS HATED SLIDES LIKE
THIS BUT WOW THERE'S A LOT OF
DATA HERE.
I ZOOMED IN TO SHOW YOU WHAT
SOME OF IT LOOKS LIKE.
SACCADES, PURSUITS, FIELD,
CONTRAST SENSITIVITY AND SO
FORTH.
YOU CAN SEE THE WEALTH OF DATA
HERE AND WE CAN ANALYZE AMONG A
HUGE AMOUNT OF DIMENSIONS.
FOR EXAMPLE, THE BLUE BAR
REPRES
REPRESENTS H CONTROLS AND THE
YELLOW REPRESENT THE POSITION
AND 98 HERE AND 72 IN HERE AND
FAR A VARIETY OF REASONS THERE'S
DIFFERENT LEVELS.
AND FOR EXAMPLE, SACCADES YOU
CAN SEE THERE'S GREAT
DISTRIBUTION.
THESE INDIVIDUALS HERE ARE
HIGHLY IMPAIRED.
YOU CAN SEE THEY CLUMP AROUND
AND YOU CAN SEE THE LATENCY ARE
SHORT HERE BUT FOR CONTRAST AND
SENSITIVITY MOST HAD SOME
CONTRAST DEFICITS.
THIS IS A METRIC OF NYSTAGMUS
AND SOME HAD A FORM OF THAT.
THE SUMMARY OF THOSE METRICS
WERE WE WERE ABLE IT QUANTIFY
THIS IN THIS POPULATION FROM 3
TO 18 THAT ARE ON THE ACUTE
BRAIN INJURY AWARD.
WE TOOK ALL AND SO WE WERE ABLE
TO DO THAT.
OUTLIERS IN THIS CASE REPRESENT
OBJECTIVE EVIDENCE OF
ABNORMALITY AND THE DEGREE.
NOT JUST YES OR NO.
WE CAN OBJECTIVELY DETERMINED
WHAT IT IS AND TO WHAT DEGREE
IT'S ABNORMAL.
THERE'S HETEROGENEITY AMONG MANY
DIMENSION.
WHAT DO WE DO WITH THE DATA NOW?
HOW DO WE LOOK AT THIS?
WE LOOK AT THE OPAQUENESS AND IT
ALLOWS US TO GET OUR TEETH IN
THE DATA TO UNDERSTAND THE
DIVERSITY AND INTERACTIONS AMONG
SUBJECTS.
THERE'S METRICS ON HERE AND PUT
THEM INTO THE CORRELATION TABLE.
AND SO THERE'S EXPECTED
CORRELATION.
THIS IS IN PURSUITS.
CHILDREN WITH SACCADE DISTANCE
BIAS ALSO HAVE CORRESPONDING
DIRECTION SPEED BOXES.
YOU MOVE OUR EYES OVER A GREATER
DISTANCE -- WHEN YOU MOVE YOUR
EYES FROM HERE TO HERE AND TAKE
THE SAME AMOUNT OF TIME JUST
MOVE THEM FASTER.
THERE'S GREAT CORRELATION
BETWEEN THOSE AND THERE'S HIGH
CORRELATIONS.
AND WHEN YOU LOOK AT THIS OVER
HERE IT'S VERY UNEXPECTED.
PEOPLE WITH BETTER VISUAL FIELDS
MOVING TO THAT POSITION THEY HAD
BETTER SPATIAL VISION.
WE NEVER IMAGINED THIS WOULD
COME OUT OF THE DATA SET.
IN FACT AT THE PCA THIS FACTOR
RIGHT HERE ACCOUNTS FOR 35% OF
TOTAL.
HERE'S THE SORT OF THING WE'RE
NOW ABLE TO DO.
NOW WE'RE ABLE TO EXTRACT FROM
THE LARGE DATA SETS ON MULTIPLE
DIMENSIONS QUANTITATIVE
INFORMATION WITHOUT PRESET
POSITIONS ABOUT THEIR FUNCTION
WHATSOEVER.
AND HOW DO WE DO THIS
LONGITUDINALLY.
HERE'S AN EXAMPLE OF A CHILDHOOD
MEASURE FOR 10 MONTHS.
SOMETIMES EVERY WEEK AND OFTEN
DAI
DAILY.
LOOK AT THE MASSIVE IMPROVEMENT
IN THEIR CONTRAST SENSITIVITY
FUNCTION?
AND THERE'S THIS BEAUTIFUL CURVE
AT THAT TIME.
THIS CHILD AS MANY WE HEARD OF
AND WILL TALK ABOUT AGAIN HAD
INCREDIBLE SUCCESS.
LATENCY, THERE'S A CORRELATION
BETWEEN THE TWO.
AND SO FORTH IT DECREASED.
YOU CAN JUST SEE WHY THESE TWO
INTERACT SO WELL.
AND THERE'S OTHER CHANGES THAT
OCCUR OVER TIME AS WELL.
AGAIN, WE CAN MEASURE NOT JUST
ONCE BUT WE CAN MEASURE
REPEATEDLY.
AND DO IT QUANTITATIVELY.
CONCLUSIONS ON THIS ARE AS
FOLLOWS.
BETTER MEASURES CAN NOW BE
OBTAINED FROM TRAUMATIC BRAIN
INJURY.
IT'S NOT A PANACEA.
SOME WE CANNOT MEASURE BUT ON A
BROADER RANGE WE CAN MEASURE AND
ALLOWS US TO PUT THEM AND US ALL
IN THE SAME SCALE.
NOW WE OFTEN MEASURE ONE WAY FOR
BRAIN INJURY POPULATION AND
ANOTHER FOR INDIVIDUALS.
FUNCTION CAN BE MEASURED
LONGITUDINALLY.
THERE'S NO UPPER LIMIT TO THIS.
WE CAN NOW THE LARGE SCALE DATA
SETS WHERE WE COULDN'T BEFORE OR
AT LEAST WE'RE TRYING TO SQUEEZE
TOO MUCH INFORMATION OUT OF TOO
SMALL OF A DATA SET AND NOW WE
CAN HAVE LARGER DATA SETS AND
HOW THEY INTERACT WITH
INFORMATION AND WE HEARD A GREAT
TALK ON AND WE'RE DOING THE
ANALYSIS.
THIS IS THE SORT OF THING NOT
ABLE TO BE DONE BEFORE AND NOW
WE CAN DO.
IT HIT SEEMS QUIRKY AND KIND OF
PERIOD BUT THE KIDS LOVE IT.
THE KIDS LOVE IT.
THEY'RE ALL DOING THIS AND IT
ALSO FACILITATES ENGAGE THE.
THEY CAN'T DO MACHINE SO JUST IN
TERMED OF THEIR INVOLVEMENT
THEY'RE ABLE TO DO ALL KINDS OF
THINGS.
PARENTS BEG US FOR THEM TO HAVE
A WAY TO DO THIS AND THE
ENGAGEMENT AND REPETITION ARE
THE INGREDIENTS OF THERAPY AND
WE CAN LOOK AT REPUTATION AS
THERAPEUTIC INTERVENTIONS AND WE
CAN LOOK AT THIS OVER TIME AND
NOT JUST CHAPERONE RECOVERY ALSO
FOLLOW IT OVER TIME AND THINK
IT'S READY FOR DEPLOYMENT AND
WOULD LOVE TO PARTNER WEDGE
WITH PEOPLE.
WE NEED MUCH LARGER DATA SETS
AND CANNOT ONLY MEASURE VISION
BUT IF VISION IN CVI WE NEED TO
MEASURE THIS TO KNOW WHAT WE'RE
UP AGAINST AND BY CORRELATING
THE VISUAL DEFICITS OR FUNCTIONS
WE'LL FIGURE THIS OUT AND
DICTATE WHAT FORMS IT COMES IN
AND TRY TO IMPROVE IT.
THANK YOU VERY MUCH FOR YOUR
ATTENTION.
I HAVE A TEAM OF PEOPLE THAT ARE
FANTASTIC TO DO THIS.
AND SHE IS UNBELIEVABLY GOOD AT
GENERATING THE INFORMATION I'VE
SHOWN YOU IS MY CLINICIAN AND I
HAVE A FANTASTIC COMPUTER
SCIENTIST AND SO GRATEFUL FOR
THE FUNDING WE'VE HAD FOR THIS
WORK.
IT WAS A CHANCE TO DO THIS SORT
OF THING BUT HOPE YOU CAN SEE WE
HAVE A SYSTEM THAT ALLOWS US TO
MEASURE FUNCTION IN ACCURACY IN
WAYS WE COULDN'T HAVE IMAGINED
BEFORE.
THANK YOU AGAIN NOR OPPORTUNITY.
>> THANK YOU, GLEN.
OUR NEXT SPEAKER IS
DR. CHRISTINE ROMAN LANTZY
PROGRAM DIRECTOR AT PEDIATRIC
VIEW PROGRAM AND CHILDREN'S HOME
AT LEMIEUX FAMILY CENTER.
I WAS A PENGUINS FANS AT ONE
POINT SO MARIEL LEMIEUX,
DEFINITELY.
>> THANK YOU.
IT LOOKS LIKE I'M AT MY ENDING
TIME AND TELL ME WHEN YOU WANT
ME DONE AND HONESTLY.
OKAY.
ONE THING ABOUT TEACHING
GRADUATES STUDENT IS YOU LEARN
TO GO OVER TIME.
I WILL FINISH ON TIME.
SO THE CVI RANGE IN 15 MINUTES.
THIS IS GOING TO WORK.
IT IS A FUNCTIONAL VISION
ASSESSMENT FOR INDIVIDUALS WIN
CVI AND THE BACK STORY TO THE
CVI RANGE WAS DEVELOPED BASED ON
PARENTS INPUT TO ME ABOUT WHAT
THEY NEEDED.
I WOULD TALK ABOUT THE CVI BEING
ON A CONTINUUM AND DESCRIBE
ARBITRARILY WHAT I THOUGHT OF
DEGREE OF FUNCTIONAL VISION AND
PARENTS SAID TO ME WHAT DOES
THAT MEAN AND A SAID I SAID SO.
IT'S USED FOR INDIVIDUALS 9
MONTHS OF AGE TO SCHOOL AGE NOT
ON THE PRESENCE OR ABSENCE OF
ADDITIONAL DISABILITIES.
I CAN USE IT WITH GIFTED
ABILITIES TO THOSE STRUGGLING TO
LEARN.
IT'S NOT ASSOCIATED WITH
COGNITIVE COMPETENCE BECAUSE WE
CAN'T REALLY GET AN ACCURATE
I.Q. SCORE IN MOST INDIVIDUALS
WITH CVI DUE TO THE INHERENT
TESTING AND ASSOCIATED WITH THE
ABILITY TO TALK OR WALK AND
DRIVEN BY A SERIES OF THINGS WE
DO AND WITH ALWAYS THE GOAL IN
MIND OF COMPLYING WITH THE
STRUCTURE.
AND HE CAN SOLVE THE RUBIK'S
CUBE IN ABOUT TWO MINUTES.
AND AS YOU SEE HERE IT PLACES
THE CHILD'S VISUAL FUNCTION AND
WE'RE TALKING ABOUT THE DEGREE
OF FUNCTIONAL VISION -- WE'RE
NOT QUALIFYING THE CHILD AS
SOMETHING.
IN PHASE 1 THE CHILD IS
PRIMARILY USING DORSAL STREAM
VISION.
THEY PRIMARILY NOTICE THINGS
THAT MOVE.
THINGS THAT HAVE COLOR.
THINGS THAT MAY BE FORM WHITE
SOMETIMES BUT NOT CONSISTENT USE
OF VISION AND IT'S COMPLETELY
SEPARATE FROM HOW THIS CHILD
THINKS, WHAT THEIR ABILITIES ARE
ACADEMICALLY AND LANGUAGE WISE.
THESE CERTAIN REQUIRE
SIGNIFICANT CONTROL OF THEIR
ENVIRONMENT.
IT'S IMPORTANT TO KNOW THIS
BECAUSE ULTIMATELY THIS SCORE IS
USED FOR THE MAJOR PURPOSE OF
DRIVING INSTRUCTION.
IF THE INTERVENTIONS DON'T MATCH
THAT CHILD'S LEVEL OF FUNCTIONAL
VISION HE DID NOTHING MORE THAT
BE ACT RANDOMLY AND RANDOM I
DON'T THINK WORKS.
LOOKING IS NOT INTERPRETING.
AND THEY HAVE 7 TO 10 AND I HAVE
NOT MET THE INDIVIDUAL WHO
SCORED 10.
THIS PERSON PROBABLY REQUIRES
THE MOST SUPPORT BECAUSE THEIR
VISION IS ON ALL DAY AND HAVE TO
ACCOMMODATE THEIR NEED FOR
ADAPTATION AND SPECIAL USE OF
LANGUAGE AND SO FORTHAL FOURTH
ALL DAY LONG AND THEY LOOK AT
INTERVIEW DIRECT ASSESSMENT.
THE PAPER DOESN'T MATTER UNTIL
YOU GET EVERYTHING GATHERED AND
THAT IS GATHERED THROUGH THE
INTERVIEW AND OBSERVATION AND
DIRECT ASSESSMENT PROCESSES.
IT'S IMPORTANT FIRST OF ALL TO
MENTION THE INTERVIEW WAS MY
DOCTORAL RESEARCH IN WHICH 25
QUESTIONS ARE ASKED AND THERE'S
A SCORING GUIDE TO SHOW WHETHER
THE SCORE -- THE APPARENT
RESPONSE IS A YES OR NO FOR CVI.
IT'S ALSO IMPORTANT TO SAY IT'S
NOT A WRITTEN INVENTORY BECAUSE
PEOPLE ANSWER DIFFERENTLY WHEN
YOU ASK THEM FACE TO FACE WHEN
WHEN YOU ASK THEM TO WRITE
SOMETHING.
I WANT TO SEE WHAT HAPPENS IN
YOUR CLASSROOM OR AS YOU WALK
THROUGH THE HALLS OF OUR
HOSPITAL AND WHEN WE DON'T PUT
CONTROLS IN AND DIRECT
ASSESSMENT IS IN THE CONTROLLED
ENVIRONMENT.
FIRST THE ACROSS CHARACTERISTIC
MENL ODDS AND THERE'S STATEMENTS
AND BEHAVIORS THAT INCORPORATE
ONE OR MORE OF THE
CHARACTERISTIC REPRESENTATIONS.
THIS SHOWS A SCHEMATIC OF WHAT
THE SCORING MATRIX LOOKS IN THE
ACROSS CHARACTERISTICS METHOD
AFTER OBSERVATION AND ASSESSMENT
AND WHAT DID I USE TO SCORE THIS
AND SCORE KWL THAT STATEMENT IS
RESOLVED OR TRUE OR PARTIALLY
TRUE OR THE CHILD'S NOT THERE
YET.
IT CONTINUES TO ADVANCE.
THIS IS NOT BASED ON A
DEVELOPMENTAL SEQUENCE OF THAT
CHILD'S OVER ALL DEVELOPMENT BUT
BASED ON FUNCTIONAL, VISUAL
SKILLS.
YOU'LL SEE HAS A FAVORITE COLOR
OR VISUALLY FIXATES IN THE
ENVIRONMENT CONTROL.
ALTHOUGH STATEMENTS MEANS WE
SCORE THOSE AFTER WE GATHER THE
DATA AND GOES FROM FIVE TO SIX
AND SEVEN TO EIGHT AND NINE TO
TEN THE HIGHEST LEVEL OF VISUAL
FUNCTION AND LOOK FOR A CEILING
AFFECT AND DRIVE THE SCORE FOR
RATING ONE.
RATING TWO IS WITHIN
CHARACTERISTICS.
TO STRENGTHEN THE TEST WE HAVE
TO ASK THE SAME QUESTION IN
ANOTHER WAY AND USING THE
OBSERVATION IN A DIRECT
ASSESSMENT AND BASED ON WEATHER
THE CHARACTERISTIC WITHIN EACH
CHARACTERISTIC AND THERE'S 10
LISTED HERE WITH CHARACTERISTICS
AND WE LOOK AT THE EXTENT OF THE
AFFECT OF CHARACTERISTIC AND THE
CHILD RESPONDS TO THIS
CHARACTERISTIC AND NOT THEIR AGE
MATES.
THOSE VALUES ARE THEN ADDED AND
SOME BECOMES THE SECOND SCORE.
I PLOTTED ON THE NUMBER LINE AND
RANGE.
IT'S NOT A POINT IN TIME BUT THE
SCORES ARE USED TO DESCRIBE THE
IMPACT OF CVI.
THE SCORES CAN ALSO THEN BE USED
EDUCATIONALLY TO DESCRIBE THE
CHILD'S FUNCTION OR CURRENT
LEVEL OF VISUAL FUNCTION.
ANYTHING SCORED IS A PLUS IS
DESCRIBING HOW THE CHILD IS
USING THEIR VISION NOW AND SCORE
RATING 2 THE SECOND ONE WITHIN
THE CHARACTERISTICS ARE USED TO
DESCRIBE ACCOMMODATIONS.
ANYTHING THAT IS STILL ACTIVELY
AFFECTING THE STUDENT SHOULD BE
IN THEIR IEP AS AN
ACCOMMODATION.
THERE'S A TRANSLATION DIRECTLY
INTO SERVICES.
AND TO SHOW YOU WITHOUT ANY
DETAIL THERE'S CONSIDERATION
WHEN THE CHILD WITH CVI HAS AN
OKLAHOMA -- OCULAR CONDITION
BECAUSE THE WAY YOU SCORE THE
STATEMENTS TO LOOK AT WHEN
THERE'S A CO-EXISTING OCULAR
CONCERN AND DON'T KNOW EXACTLY
IF THE CHILD IS IN PHASE 1
WHETHER IT'S DUE TO CVI OR
OCULAR ISSUE.
WE HAVE TO GO ON WHAT WE SEE BUT
CAN'T DECLARE THEY CAN'T
IDENTIFY THE IMAGE BECAUSE OF
THE OPTIC NERVE OR CVI AND AS
THE CHILD IMPROVE WE GET A
PICTURE OF WHAT IS MOST
IMPACTFUL AND PROGRAM
ACCORDINGLY.
THERE'S INDIVIDUALS WHO SCORE 7
TO 10 AND WHAT HAPPENS WEN WHEN
THE VISION IS ON ALL DAY AND
THIS BREAKS THEM INTO MANY MANY
MORE COMPONENTS.
55 ITEMS TO TAKE THINGS INTO
SMALLER COMPONENTS.
THE USE OF RANGE AND SORTED
MATERIALS DRIVE INSTRUCTION AND
ACCESS TO MATERIALS,
ENVIRONMENTS, METHODS AND
PARTNERS.
THIS IS THE QUALITY OF THE
SERVICE AND HOW WELL IS THAT
SERVICE BEING DRIVEN BY ACCURATE
DESCRIPTIONS AND THAT'S
CRITICAL.
THE RANGE SCORES ARE CRITICAL TO
DESIGN INSTRUCTION TO MEASURE
IMPROVEMENTS IN FUNCTIONAL
VISION AND SEE IF THERE'S
CHANGES BECAUSE THERE'S AN
EXPECTATION OF IMPROVING VISION
IN INDIVIDUALS WITH CVI AND ALSO
TELLS US WHETHER OUR
INTERVENTIONS ARE EFFECTIVE.
THE CHILD SCORES 5 AND NO OTHER
REASON CAN EXPLAIN THIS, THEN I
MAY WANT TO TAKE A LOOK AT MY
INSTRUCTION AND SAY IS THERE
SOMETHING I CAN DO BETTER THAT
KILL HELP THIS CHILD ACCESS
THEIR VISUAL WORLD MORE.
IT CAN BE USED FOR RESEARCH AND
SEALS TO BE MEANINGFUL FOR
PARENTS AND WHEN IT'S NOT
CONDUCTED WITH FIDELITY ALL I
CAN DO IS SAY I'M SO SORRY IF
YOU OR SOMEONE YOU KNOW HAD
ARRANGE CONDUCTED AND IT WASN'T
DONE CORRECTLY.
AND IT PROVIDES A COMMON
LANGUAGE AND THE INDIVIDUAL
SEEMS TO BE IN PHASE 2 CVI AND
WE GET THE SENSE THEY'RE USING
THEIR VISION AND PROBABLY USING
EYE TO EYE OBJECT AND IF I SAY
WHAT MATERIALS ARE YOU USING
WITH THE STUDENT AND THEY SAY I
HAVE PICTURE CARDS AND DOESN'T
SEEM TO BEHAVE DURING SPEECH
THERAPY.
HE'S AT THE END OF PHASE 1 AND
AT THIS POINT HE'S NOT ACCESSING
THE INFORMATION.
PARENT DEPEND ON THE SCORES TO
MONITOR THEIR CHILD'S FUNCTIONAL
VISION STATUS AND USE THEM TO
CONSIDER THE APPROPRIATENESS OF
ACCOMMODATION THAT PERMIT
ACCESS.
PARENTS LIKE TO SEEK A METHOD
THAT VALIDATES THEIR OWN
PERCEPTIONS OF THEIR CHILD.
PARENTS HAVE TOLD ME THEY'VE HAD
EMOTIONAL MOMENTS AFTER THEIR
FIRST CVI RANGE BECAUSE THEY
FELT LIKE SOMEONE KNEW THEIR
CHILD THOUGH THEY NEVER MET THEM
BEFORE IT WAS BECAUSE THEY KNEW
THE CHARACTERISTICS.
WE EXPECT THE CVI SCORES TO BE A
SUPPORT IN OTHER TYPE OF
EVALUATION.
IT HELPS GUIDE WHAT OTHER KINDS
OF TESTING MAY BE CONDUCTED WITH
THIS CHILD AND WHETHER THOSE
THINGS ARE TRULY ACCESSIBLE FOR
THE CHILD BEING TESTED.
AS MENTIONED A FEW TIMES TODAY,
THOUGH THERE WAS A STUDY
PUBLISHED IN 2010.
THERE WAS A CERTAIN INDIVIDUAL
WHO THOUGHT A MORE RIGOROUS
APPROACH TO VALIDATING THE CVI
RANGE WOULD BE A GOOD THING AND
THAT'S HAPPENING AND I'M HONORED
TO BE PART OF THAT STUDY.
DON'T KNOW WHAT THE DATA LOOKS
LIKE BECAUSE THEY'RE NOT TELLING
ME.
I WANTED TO SHARE DATA FROM THE
BRIDGE SCHOOL AND MY
MISREPRESENT THIS SPEAK UP, BUT
THEY LOOKED RETROSPECTIVELY AT
12 CHILDREN WHO WEREN'T REALLY
BEING TESTED USING THE CVI RANGE
AND HAD RANDOM APPROACH.
NOT TO EDUCATION BUT TO THEIR
FUNCTIONAL VISION AND BEGAN
KEEPING DATA AND KEEPING TRACK
OF THE ACCOMMODATIONS AND BEING
PRECISE ABOUT WHAT THEY DID AND
FOUND ALL THE CHILDREN IN THE
GROUP THEIR LEVEL OF FUNCTIONAL
VISION IMPROVED AS MEASURED BY
THE CVI RANGE.
APPROVED AT DIFFERENT RATES.
THE MOST DRAMATIC RANGE WERE FOR
INDIVIDUALS IN PHASE 1 AND SO
FORTH.
FURTHER ANALYSIS OF COURSE DOWN
THE ROAD.
AND ALSO THERE WERE CHANGES IN
FUNCTIONAL VISION OVER TIME THAT
WERE ASSOCIATED WITH
COMMUNICATION AND LANGUAGE WHICH
IS HUGE.
AND IF WE KNOW ANYTHING ABOUT
THE CVI RANGE OR WORKING WITH
INDIVIDUALS AT CVI I'LL SAY IT
AGAIN, THINGS CAN BE SEEN BUT
NOT NECESSARILY INTERPRETED.
LANGUAGE IS EVERYTHING AND IF
YOU DON'T HAVE LANGUAGE, YOU
CAN'T SEE.
LANGUAGE IS THE DOOR OPENS UP
THE WORLD FOR PEOPLE WITH CVI
AND THEN THE ACCOMMODATIONS WE
PROVIDE THEM TO HELP THEM
VISUALLY ACTUALLY PERCEIVE THE
THING WE'RE TALKING TO THEM
ABOUT IS THE PARTNER.
THIS IS HUGE THAT LANGUAGE AND
COMMUNICATION IMPROVING OVER
TIME IN MATERIALS OF SOCIAL
LINGUISTIC AND OPERATIONAL
FREQUENCIES AND THOSE ARE
PUBLISHED DATA.
I DID IT.
THANK YOU SO MUCH.
>> OUR LAST TWO PRESENTATIONS
PERF
ARE RECORDED AND THE NEXT
PRESENTER IS DIRECTOR OF
DEVELOPMENT AND RESEARCH AT THE
CVI CENTER PERKINS SCHOOL NOR
BLIND SPEAKING THE FUNCTIONAL
VISION ASSESSMENT, MR. MAZE YLL
WAS KIND ENOUGH TO RECORD HER
PRESENTATION AFTER FALLING ILL
WHICH WE'LL WATCH TOGETHER NOW.
>> I COULDN'T BE IN THERE PERSON
BUT WANTED TO SHARE A LITTLE BIT
ABOUT OUR CVI PROTOCOL PLATFORM.
SO FIRST, I'LL JUST DISCUSS
ABOUT THE DEVELOPMENT OF THE
VISUAL BEHAVIORS, HOW THAT
CREATED A PERKINS PROTOCOL ON
CAMPUS AND HOW IT HAS NOW BECOME
A DIGITAL PLATFORM TO BE
RELEASED IN JANUARY.
SO AT PERKINS WE ARE VERY LUCKY
BECAUSE WE HAVE A LEARNING LAB
OF CHILDREN WIN WITH CVI AND
OUR INFORMATION GROWN WITH YOU
AND OUR FAMILIES AND STUDENTS
OURSELVES.
AND PEOPLE WITH CVI DISPLAY MANY
MANY VISUAL BEHAVIORS AND
TRAITS.
EACH BRAIN IS REALLY EXPRESSED
DIFFERENTLY AND IT'S THROUGH
COLLABORATION AND INDIVIDUALS
WITH CVI ON CAMPUS THAT'S THE
KEY TO OUR INFORMATION OF THE
VISUAL BEHAVIORS OF THE
FUNCTIONAL VISION OF THE CHILD
AND CO-EXISTING OCULAR
CONDITIONS AND VERY IMPORTANTLY
THEIR COMPENSATORY SKILLS.
WE KNOW CVI IS LIFE LONG.
MOST PEOPLE WITH CVI WE'VE COME
TO HAVE CO-EXISTING OCULAR
CONDITIONS.
WE'VE HAD A WONDERFUL
PARTNERSHIP WITH THE LOW-VISION
CLINIC AND BARRY AND NICOLE ARE
THERE WITH YOU TODAY AND AND
PULLED AMLIOPIA AND DISSTAGMUS
AND REFLECTIVE ERRORS THAT NEED
TO BE ADDRESSED.
QUE KNOW ENVIRONMENTS THE
CHILDREN ARE IN OR THE ALERT
STATES OF THE CHILD THE FATIGUE
LEVEL OF THE CHILD CAN REALLY
IMPACT THEIR USE OF VISION AND
THAT BECOMES A STRONG RELIANCE
ON COMPENSATORY SKILLS WHEN THE
VISION IS UNLIABLE FOR ANY
REASON.
WHEN WE THINK OF ASSESSING
CHILDREN WITH CVI WE WANTED TO
MAKE SURE IT ADDRESSED VISUAL
ATTENTION AND THE CHILD ABILITY
TO LOOK AND TO RECOGNIZE.
AND BECAUSE RECOGNITION SIS A
HUGE ISSUE THERE HAS TO BE
ONGOING ASSESSMENT WITH THE TEAM
TO CAPTURE THE DETAILS OF THE
VISUAL RECOGNITION.
SO IN DECEMBER 2019, WE CREATED
THIS HIGH-TECH VISUAL BEHAVIOR
WHILE IN HER OFFICE.
WE JUST TRIED TO MAKE EVERYTHING
THAT WE CURRENTLY KNEW ABOUT
CVI, EVERYTHING THAT WAS TALKED
ABOUT IN DIFFERENT TOOLS WE WERE
USING, ALL THE RESEARCH THAT WE
COULD PUT OUR HANDS ON AND AGAIN
MORE IMPORTANTLY EVERYTHING WE
WERE LEARNING FROM OUR STUDENTS
AND FAMILIES AND WE BEGAN TO
DOCUMENT THESE AND TRY TO PUT
THEM INTO CATEGORIES, TRY TO PUT
THEM INTO THESE UMBRELLA
CATEGORIES SO WE COULD CAPTURE
DIFFERENT VISUAL BEHAVIORS AND
CLASSIFY THEM.
AND WHAT WE CAME UP WITH VISUAL
ATTENTION AND VISUAL RECOGNITION
AND IMPACT OF CLUTTER AND
CROWDING AND INCREASED SPACING.
VISUAL FIELD ABILITIES, IMPACT
OF COLOR, FORM ACCESSIBILITY
THAT COMES FROM PEOPLE AND
SENSORY INTEGRATION WHILE THE
CHILD IS TRYING TO USE THEIR
VISUAL.
VISUAL CURIOSITY.
THE APPEARANCE OF THE EYE AND
MOVEMENT OF THE EYE AND OF
COURSE THE REAL UNDERLYING
SUPPORT HERE IS THOSE VERY
IMPORTANT COMPENSATORY SKILLS.
I'M NOT GOING TO HAVE TIME TO GO
INTO EACH AREA TO SHOW YOU THE
REAL UMBRELLA NATURE OF THE
VISUAL BEHAVIORS BUT WANTED TO
TAKE AN EXAMPLE OF MOTION.
SO WHAT WE'VE LEARNED IS THAT
SOME CHILDREN CAN'T PERCEIVE
MOTION AT ALL.
SOME CHILDREN NEED MOTION OR
AWARENESS OF PEOPLE AND THEIR
VISUAL ONLY TO MOVEMENT AND WANT
TO CAPTURE THAT.
WE KNOW SOME CHILDREN USE MOTION
FOR RECOGNITION.
THE WAY A PERSON MOVES MAY HELP
THEM UNDERSTAND THAT'S THE
THAT'S HOW THEY IDENTIFY THAT
PERSON.
SOME CHILDREN NEED TO MOVE THEIR
BODIES OR HEADS TO USE THEIR
VISION DIFFICULTY AND SOME HAVE
TROUBLE WITH THE SPEED AND
DIRECTION OF MOVEMENT AND WE SEE
THAT WITH OUR CHILDREN WHERE YOU
COME UP TO A CHILD AND THEY
PULLBACK.
THEY DON'T REALLY UNDERSTAND
WHERE YOU ARE IN SPACE AND
AROUND SAFETY AND CROSSING
STREETS.
WE KNOW MOTION CAN BE
DISTRACTING AND WE KNOW THAT
CHILDREN ARE SOMETIMES UNABLE TO
DISENGAGE FROM THIS MOTION.
WE KNOW CHILDREN ARE DISTURBED
BY BUSY ENVIRONMENT.
WE'VE COME TO THINK IT IN
MULTIPLE WAYS AND AROUND MOTION
WE WANT TO MAKE SURE WE
UNDERSTAND WHAT KIND OF MOTION
IS TOLERATED IN THESE BUSY
ENVIRONMENTS.
THIS COMES FROM OUR FAMILIES.
SOME FAMILIES THE CHILD CAN'T
HANDLE BEING IN A MALL WHERE
THERE'S RANDOM MOTION BUT IF
THEY'RE IN A ROLLER SKATING RINK
OR HALLWAY WHERE EVERYONE'S
WALKING IN THE SAME DIRECTION OR
IN CHURCH WHERE EVERYONE'S
WALKING IN THE SAME DIRECTION
THEY'RE NOT BOTHERED BY THOSE
BUSY ENVIRONMENTS.
WE KNOW WE MUST CAPTURE THE
COMPENSATORY SKILLS BEYOND SMELL
AND TACTILE WHERE KIDS QUESTION
AND LABEL THINGS.
THESE ARE COMPENSATORY SKILLS
BUT WE BROADENED IT AGAIN TO
THINK ABOUT COPING SKILLS.
HOW MUCH A CHILD RELIES ON
CONTACT.
MAYBE THEY UNDERSTAND THEIR
SPOON WHEN THEY'RE IN THE
KITCHEN WITH THE CONTEXT OF
SMELL AND TOUCH AND PREDICTION
BUT THEN THEY DON'T UNDERSTAND
THAT SPOON OUTSIDE OF THAT
CONTEXT.
THEY MAY RELY ON MEMORY AND
PREDICTION.
SO MANY CHILDREN ARE HIGHLY
ORGANIZED.
THEY WANT THINGS BACK IN THE
SAME PLACE AND RELY ON THEIR
MEMORY IN ORDER TO FIND THOSE
THINGS.
IF THOSE THINGS ARE NOT IN THE
PLACE THEY EXPECT THEY HAVE
DIFFICULT TIME FINDING IT.
WE KNOW THEY VERY MUCH RELY ON
COLOR CODING WHERE THEY DON'T
REALLY PAY ATTENTION TO THE
SHAPES OF OBJECTS BUT CODE BY
COLOR.
THEY MAY MIX THINGS UP BASED ON
COLOR WE WANT TO BE AWARE TO
CREATE PROGRAMMING THAT RESPECTS
THIS.
IT'S A GREAT SKILL TO CODE BY
COLOR.
WE WANT TO CAPTURE THAT ALL
THESE GIFTS THE CHILD BRINGS TO
UNDERSTANDING THEIR VISUAL WORLD
AND AGAIN RELYING ON MOTION TO
UNDERSTAND WHAT'S GOING ON
AROUND THEM.
WE HAVE TO MAKE SURE WE CONSIDER
THE DIFFERENT ABILITIES AND
DIFFERENT LANGUAGE ABILITIES AND
VULNERABILITIES AND MEMORY
ABILITIES.
WE DEVELOPED A PROTOCOL WE USED
ON CAMPUS AND SWITCHED TO A
PLAY-BASED ASSESSMENT.
WE'VE AND THIS IS BASED ON
THINGS WE KNOW THE CHILD LIKED
AND THIS CAME FROM THE PARENT.
AND THIS REALLY HELP US TO
UNDERSTAND THE DEFICITS AND
STRENGTHS OF THE CHILD AND GAVE
US FUNCTIONAL VISION BEHAVIORS
WE CAN REPORT BACK TO THE TEAM
TO THE PARENTS AND TO THE
MEDICAL COMMUNITY IN SOME CASES
THAT WOULD SUPPORT A DIAGNOSIS.
WE WANTED TO PROVIDE THIS
VALUABLE INFORMATION ABOUT THE
COMPENSATORY SKILL USE AND
ESTABLISH A REAL COLLABORATION
AND PARTNERSHIP WITH THE
FAMILIES AND MEDICAL AND
EDUCATION AL PROVIDERS WE NEED
WHOLE TEAM APPROACH WE GO IN
THEIR EDUCATIONAL HISTORY AND
PART
PARTNER WITH TEAMS AND WE GET
VALUABLE INFORMATION THROUGH A
PARENT INTERVIEW AND THAT HELPS
US DECIDE WHAT THE CHILD'S BEST
QUALITIES ARE AND FAVORITE
THINGS ARE AND WHAT THEIR
RELIABLE RESPONSES AND DO THEY
RECOGNIZE THROUGH FACIAL
EXPRESSIONS AND HELPS IN DESIGN
AND ASSESSMENT ON THE RELIABLE
RESPONSES.
WE HAVE THE MEDICAL ENGAGEMENT
AND TEAM ENGAGEMENT.
WE HAVE DIRECT OBSERVATION AND
ASSESSMENT AND ALSO GENERATE A
REPORT AND EXECUTIVE SUMMARY
WHICH IS JUST A SMALL SYNOPSIS
OF WHAT THE CHILD CAN DO FOR THE
CLASSROOM TEACHER.
THE HIGHLIGHTED AND IMPORTANT
ELEMENTS ARE ALWAYS UNDERSTOOD
LIKE THE BEST VISUAL FIELD, FOR
INSTANCE.
AND WE DECIDED TO DEVELOP A
DIGITAL VERSION AND WE WANT THIS
TO BE FREE RESEARCH BASED
EDUCATIONAL AND COLLABORATIVE.
VERY MUCH LIKE OUR ON CAMPUS
STARTS WITH THE REVIEW AND WHERE
WE SET UP THE COLLABORATION WITH
THE MEDICAL COMMUNITY.
WE WANT TO KNOW THOSE OCULAR
CONDITIONS, THE LEGAL BLINDNESS
STATUS AND DIAGNOSIS STATUS AND
WHO DIAGNOSED THEM?
WE WANT TO MAKE SURE IT'S A
MEDICAL DIAGNOSIS NOBODY JUST
MENTIONS CVI THAT DOESN'T HAVE A
MEDICAL BACKGROUND AND THE
EDUCATIONAL REVIEW INCLUDES ALL
THE REPORTS FROM OTHER TEAM
MEMBERS AND THE IEP WITH SO MANY
GREAT INCLUDE ABOUT A CHILD'S
FUNCTIONING AROUND THEIR VISION.
THE STUDENT PORTRAIT WAS
DEVELOPED AT AN INITIAL LOOK AT
THE CHILD.
THE PARENT WILL TELL US WHAT
OTHER DIAGNOSES THE CHILD HAS
WHETHER DOWN SYNDROME OR CP OR
SOMETHING ELSE.
STRENGTHS AND WEAKNESSES AND
FAVORITE OBJECTS AND ACTIVITIES
AND RELIABLE RESPONSES WE WERE
ABLE TO EMBED SOME RESEARCH
QUESTIONS.
WE HAD TALKED TO SOME MEDICAL
ERS AND RESEARCHERS AND ASKED
THEM WHAT KINDS OF QUESTIONS
WOULD BE HELPFUL AROUND CVI.
HERE'S A COUPLE THAT WERE
SHARED.
THEY WANTED TO KNOW WHAT LEVEL
OF PREMATURELY THE CHILDREN WITH
CVI HAD.
THE LEVELS OF PREMATURELY
REFLECT THE INFORMATION.
WANTED TO KNOW IF THERE'S
EVIDENCE OF BRAIN INJURY AND THE
TIMING OF THAT INJURY AND THE
MRI RESULTS IF THEY WERE
AVAILABLE.
WHETHER THE CHILD SPENT AN
EXTENDED TIME IN THE NICU AND
WHETHER BREENLING SUPPORT WAS
NEED THESE ARE ALL QUESTIONS
MEDICAL PROVIDERS AND
RESEARCHERS ASKED US TO PUT IN
THE PORTRAIT.
WE THEN DO A PARENT INTERVIEW IN
PERSON.
WE HAVE 42 PLUS.
DEPENDING ON WHAT IS ANSWERED IN
THE STUDENT PORTRAIT, CERTAIN
QUESTIONS WILL DROP AWAY.
IF THE PARENT ANSWERS THE CHILD
DOESN'T HAVE USE OF THEIR LOWER
LIMBS, WE'RE NOT ASKING ANY
LOWER LIMB FUNCTIONING
QUESTIONS.
THAT'S WHY A PARENT INTERVIEW
CAN BE DIFFERENT.
THE PARENT INTERVIEW NOW HAS IN
THE DIGITAL PLATFORM A SCALE AND
WE HAVE A TEAM INTERVIEW TO GET
AT THE TEAM.
FROM THE REVIEW AND PORTRAIT AND
INTERVIEWS THE TOOL WILL CREATE
A STUDENT EXEC A SMALL SYNOPSIS
OF THE CHILD FUNCTIONING NOT A
FULL ASSESSMENT OF THE SYNOPSIS
OF WHAT WE LEARNED SO FAR AND
GENERATE A DOCTOR'S LETTER WHICH
WILL BASICALLY SAY HERE'S SOME
OF THE FUNCTIONAL INFORMATION
THAT WE'VE GAINED FROM THE
PARENTS AND TEAM AND OWN
OBSERVATIONS THAT MIGHT SUPPORT
A DIAGNOSIS.
THAT IS GENERATED BY THE TOOL.
THE INTERVIEW AND STUDENT
PORTRAIT ALLOWS THE TVI TO
DEVELOP THEIR PROTOCOLS.
BASED ON WHAT THE CHILD LIKES.
AND THEN FINALLY FROM THE
OBSERVATION AND DIRECT
ASSESSMENT PROTOCOLS AT ALL THE
OTHER INFORMATION, A FINAL
REPORT IS GENERATED WHICH
DISCUSSES THE FUNCTIONAL VISION
OF THE CHILD, THE COMPENSATORY
SKILLS AND RECOMMENDATIONS AND
THE RECOMMENDATIONS ARE GROUPED
ACCORDING TO ENVIRONMENTAL
REQUIREMENTS, LEARNING MATERIAL
REQUIREMENTS, PRESENTATION,
PHYSICAL REQUIREMENTS AND SOCIAL
SUPPORTS OR NAVIGATION
REQUIREMENTS.
WE ALSO HAVE SOME OTHER EMBEDDED
RESOURCES WESTBOUND THE -- WITH
THE TOOL.
WE HAVE AN ASSESSMENT AND
ONGOING MONITOR SHEET BECAUSE
ANY ASSESSMENT IS A MOMENT IN
TIME FOR A CHILD WITH CVI.
WE NEED TO MONITOR THE PROGRESS
ACROSS TIME AND ENVIRONMENTS AND
A RECOGNITION TEMPLATE WHICH IS
SHARED WITH THE PARENT SO WE GET
THE DETAILS OF WHAT THINGS ARE
RECOGNIZED IN THEIR VISUAL
WORLD.
WE WERE LUCKY ENOUGH TO TO USE
THE COMPANY CALLED ED COUNT.
THEY HELP US TO ESTABLISH PARENT
INTERVIEW RELIABILITY AND
VALIDITY AND DEVELOPED OUR
TECHNICAL MANUAL AND HELPED
GATHER VISUAL BEHAVIORS.
IF WE COULD NOT FIND A BODY OF
RESEARCH ABOUT VISUAL BEHAVIOR
IT COULD NOT APPEAR ON THE
PROTOCOL.
THEY ALSO HELP US CONDUCT
MULTIPLE TRIALS THAT CULMINATED
IN A NATIONAL TRIAL WITH PARENT
INTERVIEW THAT GAVE US 114
DIFFERENT INTERVIEWS.
IT TOLD US WE HAD A HIGH DEGREE
OF RELIABILITY THE THEY WERE
ANSWERING THE SCALE IN THE SAME
WAY REGARDLESS OF THEIR PRIOR
KNOWLEDGE OF CVI.
CURRENTLY WE'RE WORK WITH
BRILLIANT ASSESSMENTS DEVELOPING
OUR DIGITAL PLATFORM.
WE'RE DOING THAT WITH BRILLIANT
ASSESSMENTS AT THIS POINT.
AND WE'RE PROVIDING LOGIC MAP
FOR THE TOOL WHICH WILL BE HIPAA
COMPLIANT AND FREE AND ONLINE
AND ACCESSIBLE AND EASY TO USE
AND HAVE EMBEDDED VIDEOS BECAUSE
WE FEEL LICK THE WORLD OF CVI
NEEDS MORE EDUCATION AROUND CVI
AND VISUAL BEHAVIORS IT WILL
PROVIDE PDF AND WORD OUTPUTS AND
CUSTOMIZE INFORMATION TO ALL THE
DOCUMENTS AVAILABLE AND PROVIDE
THE DATA AGGREGATION.
THE RELEASE DATE IS JANUARY,
2024.
ONE OF THE REASONS WE DECIDED TO
PUT THIS UP DIGITALLY IS WE
NEEDED IT FLEXIBLE.
IN THE WORLD OF CVI IT'S
CHANGING WITH NEW INFORMATION
ALL THE TIME.
WE WANTED TO UPTAKE AND EXPAND
THE INFORMATION AS MUCH AS WE
COULD.
WE WANTED TO ALLOW MEDICAL
PROVIDERS AND RESEARCH
EDUCATIONAL TO USE THE TOOLS AN
ANSWER QUESTIONS IN CVI.
WE WANTED TO BECOME FOCUSSED ON
CAUSES AND SYNDROMES AND WHAT
ARE WE SEEING FROM THE CHILDREN
ASSESSED FROM THE TOOL IF THEY
HAVE DOWN SYNDROME WHAT ARE WE
SEEING IN THEIR ANSWERS AND
PROFILES.
IS THAT SOMETHING WE CAN HONE IN
AND ADDRESS IN A CAUSE OR A
CO-EXISTING CONDITION AND NEED
TO DEVELOP ON THE 0 TO
3-YEAR-OLD POPULATION AND HAVE
ENGAGED EXPORTS TRYING TO
INFORMATION THESE AGE GROUP AND
WHAT CLUSTERS OF AGE GROUPS DOES
IT MAKE SENSE TO PUT TOGETHER
BETWEEN THE AGE OF 0 TO 3 MONTHS
OR SHOULD THEY BE BROADER.
SO THAT'S IN PROCESS.
ALSO THANK YOU FOR YOUR TIME .
>> I HOPE YOU'RE FEELING BETTER.
OUR LAST PRESENTATION IN THE
SECTION IS DR. NICOLA McDOWELL
SENIOR LECTURE YOU ARE INSTITUTE
OF EDUCATION MASSEY UNIVERSITY
AND FOUNDER AND CREATOR OF
AUSTIN ASSESSMENT AND I KNOW
YOU'RE IN NEW ZEALAND.
THANK YOU FOR JOINING US TODAY.
>> THANK YOU FOR THE OPPORTUNITY
TO PRESENT ON THE VALIDATION OF
THE ASSESSMENT AND PROVIDING
WHERE WE ARE.
A QUICK OVERVIEW THE AUSTIN
ASSESSMENT IS FOR VISUAL ISSUES.
IT HELPS IDENTIFY ISSUES WITH
HIGH VISUAL FUNCTION AND ALSO
HELPS TO PICK UP VISUAL FIELD
ISSUES.
WE HAVE CARDS OVER FIVE LEVELS.
THE FIRST STARS WITH FOUR CARDS
AND ONE PEER AND UP TO 12 YARDS
AND FIVE PAIRS AT LEVEL FIVE.
THE COMPLETE ASSESSMENT INCLUDES
A MULTI-COLORED ROUND AND SOME
FIND IT TO HELP AND OTHERS FIND
COLOR DISTRACTING.
CHILDREN NEED TO HAVE THE
COGNITIVE ABILITY TO BE ABLE TO
MATCH TO COMPLETE THE
ASSESSMENT.
THERE'S FOUR VARIABLES INCLUDING
TIME TO COMPLETE THE ASSESSMENT,
MATCHING THE PEERS, THE TIME IT
TAKES TO MATCH THE FIRST PEER
AND THESE VARIABLES ELECT WITH
THE INDICATORS OF ISSUES WITH
THE HIGH VISUAL FUNCTION NOW
CONFIRMED BY THE TEAM AT THE CVI
NEUROPLASTICITY LAB AT HARVARD.
AND THEY HAVE SMALLER SEARCH
TIMES AND LEAST ACCURATE AND
HAVE A SLOWER RESPONSE TIME TO
VISUAL STIMULI DATA AND WHEN THE
LEVEL ARE INDICATED THEY DISPLAY
THE THRESHOLDS FOR EACH ROUND
AND FOR THE MULTI-COLORED AND
SINGLE COLORED ROUND AND THEY
DEVELOP A
[TECHNICAL DIFFICULTIES]
NOR VARIABLE.
WHEN A THRESHOLD IS MET THEY MAY
HAVE A VISUAL ISSUE AND FURTHER
ASSESSMENT IS NEEDED TO CON
FIRM.
A REPORT IS GENERATED IN THE END
TO BE DOWNLOADED AND SHARED AS
NEEDED.
THE HAS BEEN DONE IN THREE
PHASES.
ONE WAS 364 CHILDREN BETWEEN 5
AND 18 TO ESTABLISH A DATABASE.
AND LOOK AT THE ASSESSMENT AS
THE SCREENING TOOL AND INCLUDED
SCREENING 2 72 CHILDREN BETWEEN
5 AND 18.
PHASE 3 INCLUDED VALIDATION
RESEARCH WITH THE AUSTIN
ASSESSMENT SO AN ALREADY
VALIDATED VIDEO RESEARCH TOOL
AND 149 CHILDREN.
THE MAJORITY WHOM DID NOT HAVE
VISUAL SEARCH ISSUES.
ALTOGETHER OVER 900 CHILDREN
HAVE BEEN ASSISTED.
CONGRESSION ANALYSIS WAS DONE TO
LOOK AT TIME FOR EACH AUSTIN
ASSESSMENT.
FROM THIS IT WAS CLEAR AGE WAS A
SIGNIFICANT FACTOR IN THE OVER
ALL TIME WITH THE OVER ALL TIME
IN THE SINGLE COLOR FOR EACH
YEAR OF AGE AND 2.2 FOR THE
MULTI-COLORED ROUND.
AND SCATTER PLOT GRAPH ALSO
SHOWED THE NATURAL AGE RANK
RANGES IN LINE WITH VISUAL
MATURATION AND THEY DRLED THE
THRESHOLDS FOR THE THREE AGE
GROUPS.
NOR YOUNGER CHILDREN THE 85
PERCENTILE WAS USED TO ENSURE
THE NET WAS CAST WIDE ENOUGH AND
SHOWED THE BIGGEST RANGE OF
PERFORMANCE.
FOR THE EQUITY VARIABLE IT WAS
SET TO FOUR OUT OF FIVE.
FOR THE EFFECTIVENESS OF THE
SCREENING TOOL, 270 CHILDREN
BETWEEN 5 AND 13 FROM THIS 26
WERE FOUND TO BE OUTSIDE THE
NORMATIVE RANGE FOR AT LEAST ONE
MET THE THRESHOLD AND OTHERS
WERE FOUND TO HAVE A REASONABLE
FOR CLINICAL FINDING FOR
ASSESSMENT RESULT.
FIVE CHILDREN WERE IDENTIFIED AS
CVI HIGHLY LIKELY AND FIVE WERE
IDENTIFIED ADDS MAYBE HAVING CVI
AND SEVEN CHILDREN IDENTIFIED AS
HAVING A VISUAL ISSUE WITH
FURTHER ASSESSMENT NEEDED TO
DETERMINE THE NATURE OF THE
ISSUE.
TO CONFIRM THE DIAGNOSES
ASSESSMENT WAS DONE IN A
CLINICAL SETTING.
THIS ISN'T ANYTHING LIKE THE
ASSESSMENT FOR DATA AGE 5 TO 18.
THIS MEANT WE DIDN'T HAVE A GOOD
STARTING POINT BUT KNOWING HOW
IMPORTANT IT IS FOR THE FIELD TO
HAVE AN EFFECTIVE SCREENING TOOL
WE PERSISTED.
AFTER CAREFUL CONSIDERATION IT
WAS THOUGHT THE TESTS WOULD BE
USED AND THIS WASN'T A PERFECT
COMPARISON.
THE ONLY ONES WITH DATA FOR THE
AGE GROUP FOR THE CHILDREN AGE 5
TO 8 AND SEPARATE FOR THE OLDER
CHILDREN.
THE DIFFERENCE BETWEEN THE TEST
AND THE AUSTIN SYSTEM WAS THERE
NO TRIAL COMPONENT.
I'LL TALK ABOUT WHY IT'S
IMPORTANT IN THE NEXT TWO
SLIDES.
THE NEXT CHARGE IS WE'VE BEEN
UNABLE TO FIND CHILDREN
DIAGNOSED WITH CVI AND THE
COHORT OF CHILDREN HAS NOT BEEN
IDENTIFIED OR DIAGNOSED.
IRONICALLY THE VERY REASON THE
ASSESSMENT WAS NEEDED MADE IT
CHALLENGING.
TO OVERCOME THIS CHILDREN HAD
VISUAL SEARCH ISSUES.
IN THE END WE ASSESSED 149
CHILDREN AND THE REST HAD A
RANGE INCLUDING CVI,
NEURODIVERSITY, BORN PREMATURE
AND CEREBRAL PALSY.
I'M NOT GOING TO GO INTO TOO
MUCH DETAIL ABOUT THIS TABLE.
IT CAN WESTBOUND REVIEWED IN THE
ARTICLE BUT BASICALLY YOU CAN
SEE THE ASSESSMENT WAS MORE
SENSITIVE AT PICKING UP CHILDREN
WHO POTENTIALLY HAD VISUAL
ISSUES COMPARED TO THE
CANCELLATION TESTS AND THEY'RE
NOT THE SAME AS AN ASSESSMENT.
WE COMPARED INDIVIDUAL IN EACH
AGE GROUP THAT WERE IDENTIFIED
AS HAVING A POTENTIAL ISSUE WITH
A NUMBER OF INDIVIDUALS OUTSIDE
THE NORMATIVE RANGE FOR THE TIB
CONSOLATION.
THE RESULT WAS SHOWN HERE.
THE BIGGEST TAKEAWAY WAS ONLY
SLIGHT AGREEMENT BETWEEN THE
CANCELLATION AND ASSESSMENT AND
THIS WASN'T STATISTICALLY
SIGNIFICANT.
HOWEVER, AS WE KNOW FROM THE
RESEARCH OUT OF THE HABITS A KEY
INDICATOR ARE SLOWER RESEARCH
TIMES, BEING LESS ACCURATE AND
SLOW RESPONSE TIME TO VISUAL
STIMULI.
THERE WAS NO TIME COMPONENT
WHATSOEVER.
CHILDREN COULD TAKE AS LONG AS
THEY WANTED TO COMPLETE THE
ACTIVITY AND THE DIFFERENCE
WOULD BE TO ASK OF HAVE
SIGNIFICANTLY DIFFERENT.
THE DIAGNOSTIC VALUES WAS ALSO
EXAMINED.
THE GROUP INCLUDED INDIVIDUALS
WITH CONDITIONS KNOWN TO HAVE
VISUAL ISSUES AS WELL AS
INDIVIDUALS WITH NO NOBODY
CONDITIONS.
YOU CAN SEE THIS PROVIDES
INTERESTING DATA TO HELP THE
AUSTIN ASSESSMENT.
THE TABLE CAN BE REVIEWED ON
THE SHEET SLIDES OR PUBLISHED
ARTICLE.
THE AGREEMENT WAS USED WITH THE
FOLLOWING RESULTS ALL
SIGNIFICANT SIGNIFICANT.
FOR THE AGE GROUP IT WAS A
MODERATE DIAGNOSTIC VALUE AND
SENSITIVITY OF 0.85 AND OR THE 9
TO 12 THE SENSITIVE WAS 0.533
AND SPECIFICITY OF 1.0.
FOR THE 13 TO 18 THERE WAS A
VALUE SENSITIVITY OF 0.7.7 TO
SPECIFICITY OF 0.8-0.
AND IT PROVIDED INITIAL
VALIDATION ABBE A EFFECTIVE
SCREENING TOOL SBISHING BETWEEN
CHILDREN WITH PHYSICAL VISION
AND MENTAL ISSUES HOWEVER, FEAR
AND VALIDATION IS NEEDED BY
DOING THIS BE A LARGE COHORT TO
CHILDREN.
40 DIAGNOSED WITH CVI.
WHAT'S NEXT?
WE HAVE A TRUST CALLED THE
AUSTIN McDOWELL FOUNDATION AND
COMPARING A PRE-ORDER OPTION AND
RELEASED A VIDEO IN THE NEXT
COUPLE WEEKS.
THE PERSONAL AD WILL HAVE ACCESS
TO THE TRAINING OR PRACTICE
VERSIONS WHICH HAVE DIFFERENT
THINGS TO ENCOURAGE CHILDREN TO
PLAY THE GAME.
THOUGH THIS WILL NEED FURTHER
RESEARCH, WE CAN BEING PLAYING
THE ASSESSMENT TO IMPROVE VISUAL
FUNCTIONS FOR THOSE WHO HAVE HAD
THE OPPORTUNITY TO DO THIS SO
FAR.
WE HAVE DINOSAURS, SPACE AND NEW
ZEALAND NATURE.
WE'D LOVE TO GET THE CHILDREN'S
IDEAS ON WHAT THINGS THEY'D LIKE
TO PLAY.
THE PROVISIONAL FEATURE IS FOR
TEACHERS AND YOU'LL GET ACCESS
TO THE AP THAT DISPLAYED ALL THE
SCREENING RESULTS.
FOR THOSE WHO WANT TO ANALYZE IT
FURTHER, THERE'S THE ABILITY TO
DOWNLOAD IT FROM THE DASHBOARD.
IT WILL HAVE AN ORGANIZATION
JOBBING DOWN AND THE ABILITY TO
INVITE USERS.
I LOG IB WITH THE ORGANIZATION
LOGIN DATA.
THANK YOU AGAIN FOR THE
OPPORTUNITY TO SHARE AN UPDATE
ON THE AUSTIN ASSESSMENT.
I'M HOPEFUL IT WILL HELP WITH
THE IDENTIFICATION LESS THAN 3%
4% IN MAINSTREAM INDIVIDUAL
POTENTIALLY IS STUMBLING DUE TO
UNIDENTIFIED VISUAL ISSUES.
FOR MORE GO TO OUR WEBSITE OR
CON ACT ME THROUGH THE E-MAIL
ADDRESS.
YOU CAN SLIDE UP TO THE AXIS
PROVIDE AND DEVELOPED
INFORMATION AND HERE'S A LINK TO
THIS AS WELL.
THANK YOU AGAIN FOR THE
OPPORTUNITY.
I'M SEWERER EXCITED ABOUT THE
AUSTIN ASSESSMENT ACT.
I'M ALL EXCITED TO HAVE YOU ALL
HAVE A GO AT IT.
MANY THANKS.
>> WE'LL MOVE ON TO THE NEXT
SECTION, MOOUFLT DISCIP --
MULTI-DIAGNOSTIC CRITERIA.
THE FIRST SPEAKER IS RACHEL
HAWE.
UNIVERSITY OF MINNESOTA, SCHOOL
OF INNESIOLOGY.
-- KINESIOLOGY.
THANK YOU EVERYONE FOR HAVING
ME.
I'LL TALK ABOUT THE CHALLENGES
AND HOW TO START DISENTANGLING
OVERLAPPING DIAGNOSES IN
CHILDREN.
FIRST THE DEFINITION OF CEREBRAL
PALSY IS THE GROUP OF DISORDERS
OF DEVELOPMENT AND MOVEMENT AND
THERE'S THE IMPAIRMENT IN
MOVEMENT AND PASTURE CAUSING
LIMITATIONS TO NON-PROGRESSIVE
DISTURBANCES IN THE DEVELOPING
FETAL OR INSTANT BRAIN.
THE MOTOR DISORDERS ARE OFTEN
ACCOMPANIED BY DISTURBANCES IN
SENSATION, COGNITION,
COMMUNICATION, PERCEPTION,
AND/OR BEHAVIOR AND SEIZURE AND
OVERLAPS AND SENSATION AND
PERCEPTION.
WITHIN PERCEPTION THE CAPACITY
TO INCORPORATE AND DETERMINE
SENSORY AND/OR COGNITIVE
INFORMATION.
THIS MAY BE DUE TO THE SAME
PRIMARY DISTURBANCE IN THE BRAIN
THE SAME LESION THAT CAUSED THE
MOTOR DISORDERS IN CP OFTEN
OVERLAP ONE THE STRUCTURES IN
OTHER TALKS OF THE VISUAL SYSTEM
AND MAY DUE IT THE INITIAL
DISRUPTION TO THE BRAIN.
THE OTHER THING THOUGH IS THIS
COULD COME FROM A SECONDARY
CONSEQUENCE.
IF WE HAD MOTOR LIMITATIONS
CAUSING ACTIVITY LIMITATIONS IN
A YOUNG CHILD, THAT IS GOING TO
INTERRUPT THE TYPICAL
DEVELOPMENT OF OUR PERCEPTION
AND PERCEPTUAL AWARENESS.
IF YOU HAVE LIMITED ABILITY TO
MOVE AND INTERACT WITH THE WORLD
IN MY RESEARCH SPECIFICALLY WE
LOOK AT CHILDREN WITH UNILATERAL
IMPROVEMENT AND MAY CHANGE THEIR
PERCEPTION OF ONE SIDE OF THE
WORLD VERSUS THE OTHER.
THEY MAY BE SECONDARY ISSUES
WITH PERCEPTION.
SO I WANT TO START WITH WHAT I
THOUGHT WAS A SIMPLE MOTOR TASK.
THIS IS A CENTER-OUT REACHING
TASK AND HAVE THE WORD VISUAL
AND INDIVIDUALS START WITH THEIR
HAND IN A CENTRAL TARGET AND THE
TARGETS COME ON AND THEY TRY TO
REACH FOR THAT AS QUICKLY AND
ACCURATELY AS POSSIBLE.
WE SEE THE TRAJECTORY THE HAND
IS GOING.
WE EMPHASIZE THE COMPONENT.
WE CAN SEE FOR A TYPICALLY
DEVELOPING CHILD THEY MAKE NICE
STRAIGHT LINES AND SMOOTH
TRAJECTORIES.
WE ALSO SEE THE RESPONSE TIME IS
VERY QUICK AND THEY'RE MOVING
QUICKLY AND SMOOTHLY.
WE CAN CONTRAST THAT WITH
CEREBRAL PALSY AND THEY DON'T
LOOK THE SAME.
THEY'RE NOT AS SMOOTH AND HAVE
TROUBLE STABILIZING AND CAN
BLAME THE MOTOR ABILITY BUT CAN
ALSO THINK HOW IS THE VISUAL
SYSTEM CONTRIBUTING TO THIS?
MAYBE THERE'S ISSUES ORIENTING
TO THE TARGET WHEN IT FIRST
COMES ON.
IT MAY BE SLOWER OR NOT HAPPEN
TO CERTAIN TARGETS IN SPACE.
THEY MAY BE ABLE TO LOOK AT THE
TARGET BUT NOT GET THE
PERCEPTUAL INFORMATION AND HOW
FAR I HAVE TO REACH.
THEY MAY NOT BE ABLE TO KEEP IN
IN VISION OR DOING COMPENSATORY
THINGS TO CONTROLLER THEIR ARM
MOVEMENT AND WHAT DOES THIS LOOK
LIKE IN REAL LIFE TASK?
THINK OF A CHILD FOR A TOY IN A
TOY BOX AND I CAN COME UP WITH
REASONS BUT THERE'S A VISUAL
SEARCH COMPONENT AND HOW THEY
FIND THE TOY AND KEEP THE VISUAL
ATTENTION OUT IN.
MAYBE A MORE COMPLEX TASK IS IN
A SPORTS DOMAIN A MOTOR TASK OF
BATTING A BALL AND NOW HAVE A
MOVING OBJECT WE ARE TRYING TO
INTERCEPT WITH THE BAT.
HOW DO WE START DISENTANGLING
WHAT'S MOVEMENT AND WHAT'S
VISION?
WE HAVE TO THINK WHAT THE ROLE
IS IN VISION AND THINKING
SPECIFICALLY FOR THE TASKS.
WE FIRST USED VISION FOR ACTION
SELECTION.
WHAT TOYS ARE THERE AND WHAT
HAND DO I REACH WITH, DO I SWING
THE BAT OR HOLD IT STILL?
HOW DO WE USE THAT FOR MOVEMENT
PLANNING AND HOW BIG IS THE TOY
AND WHERE'S IT LOCATED AN HOW
FAST IS THE BALL COMING?
WE USE THE VISION TO GET THE
ACCURACY OF OUR HAND WHILE
MOVING TOWARDS SOMETHING OR STAY
ON THE STRAIGHT PATH.
AM I MOVING TO THE TARGET?
IS MY HAND MOVING IN THE RIGHT
POSITION?
WITH A MOVING OBJECT WE HAVE
ADAPT WHILE IN PROGRESS.
WE HAVE TO CONTINUE MONITORING
THINGS VISUALLY.
WE HAVE COMMON VISUAL
IMPAIRMENTS AND OCULAR-MOTOR
CONTROL AND SPATIAL ATTENTION,
DECREASED ANTICIPATORY GAZE.
OUR EYES ARE TYPICALLY A STEP
AHEAD OF OUR HANDS.
IF YEAR ALREADY REACHING FOR
SOMETHING OUR EYES ARE AHEAD AND
HELPS WITH MOVEMENT PLANNING AND
DECREASED IN CEREBRAL PALSY AND
SOMETIMES THEY USE VISION AS A
COMPENSATORY STRATEGY.
THEY DON'T KNOW WHERE THEIR ARM
IS IN SPACE AND HAVE TO LOOK AT
IT MORE WHICH MEANS THEY CAN'T
MONITOR
JUST TO TALK A LITTLE BIT MORE
ABOUT VISUAL AND ATTENTION AND
NEGLECT, THIS IS GAINING SOME
AWARENESS THAT WE MIGHT HAVE
ISSUES IN HOW WE'RE ABLE TO
DIRECT OUR ATTENTION TO WHERE WE
NEED TO IN THE ENVIRONMENT.
A SOMEWHAT RECENT PAPER FOUND
ABOUT 60% OF CHILDREN WITH
HEMIPARETIC CEREBRAL PALSY HAD
VISUOSPATIAL IMPAIRTS.
WE CAN SEE THIS REGARDLESS OF
WHERE THE LESION IS AND WE SEE
CHILDREN MIGHT HAVE MORE ISSUES
IN MOVEMENT AND MORE COMPLEX
ENVIRONMENTS DUE TO THIS.
WE ALSO HAVE AN ISSUE WITH
LEARNED DISUSE AND AGAIN SINCE
WE HAVE THESE DEVELOPMENTAL
PATTERNS, IF I'VE LEARNED EARLY
ON I'M NOT GOING TO MOVE SO MUCH
WITH THIS LIMB, THAT'S GOING TO
INFLUENCE HOW I DIRECT MY
ATTENTION TO MY SPACE.
THIS IS A CLOCK DRAWN BY AN
11-YEAR-OLD WITH CEREBRAL PALSY
WHO NO ONE THOUGHT THEY HAD ANY
ISSUES AND YET THEY DRAW THE
CLOCK MISSING HALF OF THE
NUMBERS ON IT.
THIS IS NOT A CHILD THAT'S GOING
TO BE ABLE TO INTERACT WITH THE
ENVIRONMENT REGARDLESS OF WHAT
THEIR MOTOR IMPAIRMENTS ARE.
SO HOW CAN WE START TRYING TO
DISTINGUISH THESE?
FIRST ANY CHILD WHO HAS CEREBRAL
PALSY REALLY NEEDS TO BE HAVING
A COMPREHENSIVE VISUAL
ASSESSMENT.
ALSO WHEN WE LOOK AT OUR
MOVEMENT ABILITIES, THIS IS
THINGS THAT PTs AND OTs CAN
BE DOING, I WAS TRAINED WE NEED
TO HAVE THEM REACHING FOR
SOMETHING WITH NO OTHER
DISTRACTIONS OUT THERE BECAUSE
WE WANT TO SEE THE BEST POSSIBLE
REACH AND GRASP.
THAT'S NOT REAL LIFE AND WE
MIGHT SEE DUE TO THESE VISUAL
CHALLENGES THEY'RE GOING TO HAVE
A LOT MORE CHALLENGES WHEN WE
MAKE THIS VISUAL XENOMORE
COMPLEX.
SCENE MORE
COMPLEX.
WE CAN MANIPULATE VISUAL
INFORMATION AND FEEDBACK.
CAN YOU SEE WHAT YOU'RE REACHING
TO,ES CAN YOU SEE YOUR LIMB.
WE CAN START MANIPULATING THOSE
TO GET AN ASSESSMENT OF HOW ARE
THEY USING VISION, WHAT HAPPENS
WHEN WE MIGHT MANIPULATE THAT.
THEN WHAT I'M GOING TO TALK
ABOUT A LITTLE BIT MORE IS HOW
WE CAN USE GAZE TRACKING DURING
MOTOR TASKS.
SO WE CAN HAVE INDIVIDUALS
WEARING GLASSES BASED GAZE
TRACKERS AND WE CAN EVEN SEE
THIS HAS BEEN DONE IN VERY YOUNG
CHILDREN AS WELL.
WHAT MY LAB IS DOING IS WE'RE
COMBINING A LOT OF ROBOTICS WITH
GAZE TRACKING SO THAT WE CAN
MEASURE THE MOVEMENTS IN VERY
SPECIFIC VISUAL ENVIRONMENTS
WITH THE LIMBS BEING SUPPORTED,
AND SEEING WHERE THEY'RE LOOKING
WHILE THEY'RE DOING THIS.
THIS IS GOING TO SHOW THEM
HITTING BALLS THAT ARE FALLING,
SO IT'S A PRETTY HIGHLY
DEMANDING VISUOSPATIAL TASK AND
THE GREEN CROSSHAIR IS GOING TO
SHOW WHERE THEY'RE LOOKING.
IF WE LOOK AT A TYPICALLY
DEVELOPING CHILD, THEY'RE EVEN
TO -- EVEN AS IT GETS FAST, THEY
TRACK THE OBJECT AND THEY'RE
ABLE TO HIT THEM, WE SEE THEY
MOVE BOTH THEIR ARMS.
OVER HERE IS A CHILD WITH RATE
HEMIPRE TICK CEREBRAL PALSY.
IF YOU LOOK THEY'RE JUST NOT
QUITE AS ORGANIZED IN THEIR
VISUAL BEHAVIOR.
THEY'RE STILL MOVING THEIR ARMS,
THEY'RE GOING TO HIT SOME OF THE
OBJECTS BUT WE'RE NOT SEEING THE
SAME ABILITY TO TRACK THEM AND
THEN HAVE THE ACCURATE HITS.
WE'VE ALSO DEVELOPED THIS MAZE
PARADIGM AND IDEA OF THIS IS WE
WANT TO SEE HOW ARE THEY GOING
TO INTERPRET THIS VISUAL SCENE
TO DECIDE HOW TO GUIDE THEIR ARM
THROUGH IT.
WHEN I TALK TO ANTICIPATORY
MOVEMENT, THEY'RE GOING TO START
AT A START TARGET, THIS IS A
SLOWED DOWN VIDEO, AND WE'RE
GOING TO SEE THEIR VISION IS
AHEAD OF THEIR HAND AND THIS IS
A TYPICALLY DEVELOPING CHILD,
THEY DIRECT THEIR ATTENTION
RIGHT TO WHERE THEY NEED THAT
EDGE AND THEN THEIR EYES ARE ON
BEFORE THEIR HAND HAS EVEN
CROSSED THROUGH THAT, THEY'RE ON
TO THE NEXT THING.
WE HAVE TO MORE MONITOR THIS
POSITION STRATEGY, SO YOU'RE
GOING TO SEE HERE WE HAVE THIS
DIFFERENT BEHAVIOR WHERE THEY'RE
GOING TO LOOK A LIT AHEAD BUT
THEY'RE GOING TO NEED TO BE
LOOKING BACK AT THEIR HAND A LOT
MORE.
A LITTLE SLOWER MOVEMENT HERE.
SO THEY LOOK, IT WASN'T QUITE AS
ORGANIZED, NOW THEY HAVE TO KIND
OF TRACK THEIR HAND AS THEY'RE
MOVING THROUGH IT.
SO A VERY DIFFERENT VISUAL
BEHAVIOR AND WE'RE NOT SEEING
THAT REALLY EFFICIENT
ANTICIPATORY SACCADE STRATEGY.
SO THIS IS ONE OF THE WAYS WE
CAN START TO MEASURE WHAT IS
VISION DOING DURING MOVEMENT AND
HOW IS THAT VISUAL BEHAVE YR
DIFFEREBEHAVIORDIFFERENT EVEN BO
WHAT THE MOTOR BEHAVIOR MIGHT
BE.
IT AN EXCITING AREA TO BE
GETTING INTO TO TRY TO
DISENTANGLE THESE TWO IN VERY
COMMON OVERLAPPING DISORDERS.
I'D LIKE TO ACKNOWLEDGE OUR
RESEARCH PARTICIPANTS AND
FAMILIES, MY LAB AT THE
UNIVERSITY OF MINNESOTA, SOME
HELP WE'VE GOTTEN AT PENN STATE
AND WE'VE BEEN FUNDED BY THE
APTA SECTION OF PEDIATRIC.
THANK YOU.
[APPLAUSE]
>> THANK YOU.
OUR NEXT SPEAKER IS
DR. CATHERINE LORD,
DISTINGUISHED PROFESSOR OF
PSYCHIATRY AT THE UNIVERSITY OF
CALIFORNIA LOS ANGELES.
WE'RE SO FORTUNATE TO HAVE HER
HERE WITH US TODAY.
SHE IS REALLY ONE OF THE WORLD
EXPERTS IN DIAGNOSED AUTISM.
ANY OF YOU GUYS KNOW ABOUT
AUTISM, THOSE ARE THE GOLD
STANDARD DIAGNOSTIC TESTS FOR
AUTISM SO WE'RE EXCITED TO HEAR
WHAT SHE HAS TO TELL US ABOUT
THE OVERLAP OF AUTISM AND CVI.
>> I AM A VERY AVERAGE-LOOKING
72-YEAR-OLD WOMAN.
ALSO I THINK I KNOW LESS ABOUT
CVI THAN ANYONE ELSE IN THIS
ROOM.
AND DESPITE MY SEARCHES, I COULD
FIND ALMOST NOTHING ABOUT CVI
AND AUTISM, EVEN THOUGH MANY OF
THE THINGS I'VE HEARD ALL DAY
REMIND ME OF AUTISM.
SO WHAT I'M GOING TO DO IS TALK
TO YOU ABOUT TWO THINGS.
ONE IS JUST SOME OF THE ISSUES
IN DIAGNOSING AUTISM, BECAUSE I
CERTAINLY HEAR REFRAINS ABOUT
THE DECISIONS THAT YOU ALL HAVE
TO MAKE ABOUT HAVING A STANDARD
DIAGNOSIS OR DEFINITION, I
SHOULD SAY.
THAT SOUND VERY FAMILIAR.
ALTHOUGH BROAD ANALOGIES.
AND SECOND, I DO HAVE A LITTLE
BIT OF KNOWLEDGE ABOUT THE
RELATIONSHIP BETWEEN AUTISM AND
VISUAL DIFFICULTIES, BUT IT'S
VERY GROSS, I'M JUST WARNING.
I DO HAVE TO TELL YOU, I GET
ROYALTIES FROM DIAGNOSTIC
INSTRUMENTS.
I'M NOT TRYING TO SELL YOU
ANYTHING, I PROMISE.
AND HAVE FUNDING FROM DIFFERENT
RESOURCES.
SO WHAT I'M GOING TO DO IS TALK
ABOUT GENERAL ISSUES IN AUTISM
DIAGNOSIS, OVERLAP BETWEEN
AUTISM AND WHAT I CALL
BLINDNESS, WHICH PROBABLY I
SHOULDN'T HAVE, BUT JUST -- I
BEG YOUR PARD3 PARDON FOR WRONS
AND THEN DIAGNOSTIC ISSUES THAT
MIGHT BE RELEVANT.
I THINK ONE OF THE INTERESTING
THINGS IS THAT AUTISM IS A VERY
WIDE SPECTRUM, AND MY
UNDERSTANDING FROM LOOKING AT
VISUAL -- CHILDREN WITH VISUAL
DEFICITS AND ADULTS IS THERE'S
ALSO A HUGE SPECTRUM, AND I
THINK EVEN WITHIN CVI, THERE IS
A BROAD SPECTRUM.
WE HAVE -- IN AUTISM, WE HAVE
VARIABILITY IN CASES FROM PEOPLE
WHO HAVE AUTISM AND SEVERE
INTELLECTUAL DISABILITY AND
CANNOT SPEAK FOR THEMSELVES, ALL
THE WAY UP TO HIGHLY ARTICULATE
PEOPLE WHO ARE VERY FINANCIALLY
SUCCESSFUL, THOUGH STILL MAY
STRUGGLE WITH SOCIAL DEFICITS,
AND EVERYTHING IN BETWEEN.
AND WE HAVE GENETIC VARIABILITY
WHERE WE THOUGHT WE WERE GOING
TO HAVE THESE MIRACLE THREE
GENES, NOW WE'VE GOT 400 GENETIC
PATTERNS, NONE OF WHICH ARE
SPECIFIC TO AUTISM, IN FACT, AND
SO WE HAVE TO MAKE SENSE OUT OF
THAT.
CLEARLY IT IS A GENETIC
CONDITION, OR IT IS A GENETIC
CONDITION IN MANY OF THE PEOPLE
THAT HAVE IT, MAYBE NOT ALL.
BUT SOMETHING ELSE IS GOING ON
AS WELL.
I HOPE THAT COMES BACK TO CVI.
WE'RE HOPEFUL THERE ARE GOING TO
BE FINAL COMMON PATHWAYS IN THE
BRAIN.
MAYBE NOT ONE, MAYBE NOT THREE,
MAYBE UNDER 21, THAT WILL HELP
US EXPLAIN WHY TWO KIDS -- YOU
KNOW, ONE IN GUATEMALA AND ONE
IN, YOU KNOW, NORTHERN
MASSACHUSETTS WHO LOOK SO
SIMILAR, YET YOU CAN HAVE TWO
AUTISTIC PEOPLE FROM THE SAME
TOWN AND THE SAME FAMILY LOOK SO
DIFFERENT.
SO AUTISM, WE'VE NOW REDUCED
AUTISM TO TWO DOMAINS, AND
AGAIN, I DON'T KNOW -- IT DID
SEEM LIKE THIS MAY BE RELEVANT
TO CVI IN THE SENSE OF TRYING TO
SORT OUT WHAT'S IN WHAT DOMAIN,
WHAT DO YOU REALLY NEED, WHAT
DON'T YOU REALLY NEED.
I THINK ONE OF THE MOST
IMPORTANT THINGS ABOUT DSM-V WAS
THAT WE TOOK LANGUAGE LEVEL OUT
OF THE DIAGNOSIS OF AUTISM.
AND THAT WAS FOR TWO REASONS.
ONE, THE RANGE OF LANGUAGE
LEVEL, WHICH ACTUALLY OVERLAPS
GREATLY WITH EXPRESSIVE LANGUAGE
AND RECEPTIVE LANGUAGE, AND
BASICALLY INTELLECTUAL
DISABILITY, ALTHOUGH THEY'RE NOT
THE SAME, IS HUGE WITHIN AUTISM.
SO WE SHOULDN'T BE MIXING THAT
UP.
SECONDLY, THOUGH, WE WANTED TO
REALLY PUSH -- AND THIS IS
PARTICULARLY PHYSICIANS -- TO
PAY ATTENTION TO LANGUAGE LEVEL.
BECAUSE IF YOU HAVE SOMEBODY WHO
CAN'T TALK OR CANNOT UNDERSTAND
WHAT YOU'RE SAYING, THEY ARE IN
A VERY DIFFERENT POSITION IN
LIFE.
AND WE NEED TO FIGURE OUT WHY IS
IT THAT THEY CAN'T -- IS IT THAT
THEY CAN CAN UNDERSTAND WHAT YOE
SAYING BUT THEY CAN'T TALK?
WE NEED TO UNDERSTAND WHAT IS
GOING ON HERE AND THAT SHOULD
NOT BE LUMPED WITH AUTISM.
AND THAT DOES BECOME IMPORTANT
WITH CVI.
I DON'T HAVE A SENSE OF HOW -- I
MEAN -- WELL, I HAVE A VERY GOOD
SENSE OF HOW LIMITED STANDARD IQ
TESTS ARE WITH KIDS WHO HAVE
VISUAL IMPAIRMENTS.
SO THE TROUBLE IS, YOU CAN'T
JUST COUNT ON THAT FOR ANSWERING
YOUR QUESTIONS.
WITBUT I THINK BACK TO
DR. RAVENSCROFT, YOU'VE GOT TO
HAVE A WAY OF ELIMINATING
CERTAIN HYPOTHESES ABOUT WHAT'S
GOING ON OR AT LEAST ATTENDING
TO IS THIS CHILD BEHIND IN
ABSOLUTELY EVERY WAY, OR IS THIS
CHILD BEHIND IN FOUR THINGS OR
SIX THINGS, AS WELL AS THE CVI.
AND SOMEHOW, THAT'S GOT TO BE --
I THINK IF YOU'RE SETTING UP
REGISTRY, YOU'VE GOT TO FIGURE
OUT A WAY TO GET THAT
INFORMATION.
THIS IS NOT SAYING THAT CVI
DOESN'T EXIST.
JUST LIKE I WOULDN'T SAY AUTISM
DOESN'T EXIST.
BUT WE HAVE YEARS OF RESEARCH
THAT IS PRETTY WORTHLESS BECAUSE
WE WERE COMPARING SEVERELY
INTELLECTUALLY DISABLED AUTISTIC
KIDS TO WHATEVER NORMALLY
DEVELOPING TYPICAL KIDS ARE, AND
THAT DOESN'T TELL US ABOUT
AUTISM.
SO WE NEED TO KNOW THAT.
SECONDLY, WE HAVE THESE TWO
RELATIVELY SEPARATE DOMAINS, AND
I DON'T HAVE A SENSE OF CVI
ENOUGH TO KNOW IF THAT'S TRUE,
BUT THEY ARE NOT ACCOUNTED FOR
BY EACH OTHER.
THEY ARE CORRELATED, BUT ONE IS
HAVING TO DO WITH SOCIAL
COMMUNICATION, AND THAT, WE
BASICALLY BROKE DOWN INTO THREE
PART.
NON-VERBAL COMMUNICATION, SO IT
MEANS FACIAL EXPRESSION, ALL THE
KINDS OF THINGS THAT I THINK
YOUR KIDS HAVE TROUBLE WITH.
FACIAL EXPRESSIONS, I CONTACT,
HOW YOU HOLD YOUR BODY,
GESTURES, RECIPROCAL
INTERACTIONS, WHICH IS JUST THE
IDEA THAT IF I DROP SOMETHING
RIGHT AT YOUR FEET, DO YOU PICK
IT UP?
IF I START LOOKING OVER THERE,
DO YOU START LOOKING OVER THERE?
AN INTERACTION WITH SOMEBODY ON
A MOMENTARY BASIS.
AND THEN THE THIRD THING REALLY
HAS TO DO WITH RELATIONSHIPS.
FORMING RELATIONSHIPS OVER TIME,
WHICH ALSO INCLUDES SOME SENSE
OF CONTEXT.
DO YOU HAVE ANY IDEA OF WHAT IT
IS TO BE A WORKER, TO HAVE A
JOB, YOU KNOW, TO HAVE SOMETHING
THAT YOU NEED TO DO OR A HOST,
VARIOUS ROLES THAT WE HAVE.
THAT'S ONE CATEGORY.
ANOTHER CATEGORY IS THIS REAL
GRAB BAG.
I'M WAITING FOR SLEEFER BIOLOGY
TO ANSWER IT FOR US, BUT WHY ARE
REPETITIVE BEHAVIORS YOU SEE
LIKE FLAPPING, YOU CERTAINLY SEE
IN KIDS WITH VISUAL IMPAIRMENTS,
PEERING OUT OF THE CORNER OF
YOUR EYE, BEING BOTHERED BY
TAGS, SMELLING THINGS AS FAR AS
WE CAN TELL HAVE NO ODOR, WHY
ARE THOSE THINGS RELATED TO
GETTING STUCK ON CERTAIN TOPICS,
LIKE SCOTTISH CLANS, YOU KNOW,
OR EDITORS OF NEWSPAPERS, OR
SUBWAYS.
SO WE HAVE THIS GROUP OF THINGS
THAT REALLY DON'T HAVE MUCH IN
COMMON EXCEPT SOMETHING ABOUT
REPETITION THAT APPEAR IN THE
SAME PEOPLE WHO HAVE THE MOST
SEVERE SOCIAL DEFICITS.
AND SOMEHOW AS MUCH AS WE TRY TO
ACCOUNT FOR ONE OR THE OTHER,
THE TRAJECTORIES ARE DIFFERENT
OF THESE THINGS.
THEY STILL KEEP COMING UP
TOGETHER.
SO THAT'S SOMETHING TO THINK
ABOUT FOR CVI AND I DON'T EVEN
KNOW WHERE TO START.
I THINK ANOTHER THING PEOPLE
HAVE ALREADY SAID IS AUTISM IS A
DEVELOPMENTAL DISORDER, AND
HAVING IT CHANGES THE INPUT THAT
KIDS GET, BECAUSE THEY DON'T
LOOK RIGHT AWAY.
IF SOMEBODY MAKES A NOISE.
THEY DON'T SMILE AS EASILY, AND
SO PEOPLE DON'T SMILE AT THEM AS
MUCH.
SO AT BOTH EFFECTS WHAT THEY
ATTEND TO BUT ALSO WHAT OTHER
PEOPLE GET FROM THEM.
AND THAT IS LIKELY TO HAVE AN
EFFECT.
I PUT THIS SLIDE UP BECAUSE THE
LITTLE GIRL ON THE RIGHT IS A
VERY AUTISTIC YOUNG GIRL WHO
HAPPENED TO HAVE THREE WONDERFUL
SISTERS, AND A GREAT SET OF
PARENTS, AND THEY GOT HER INTO
THIS VERY ROCKY AWFUL SENSORY
BOAT, HAPPILY, BECAUSE THEY DID
IT VERY SYSTEMATICALLY, AND SHE
HAS THOSE SISTERS.
SO MY POINT HERE IS, THIS IS
WHERE WE CAN INTERVENE W, WE CAN
GIVE KIDS BETTER OPPORTUNITIES,
WE CAN -- THAT DOES GIVE US HOPE
BECAUSE I THINK WE CAN DO A MUCH
BETTER JOB OF HELPING KIDS USE
THEIR STRENGTHS.
I THINK ANOTHER THING TO THINK
ABOUT FOR CVI IS THAT AUTISM IS
DEFINED BOTH BY THE PRESENCE OF
CERTAIN BEHAVIORS, AND THOSE ARE
THE THINGS WE THINK ABOUT THAT
ARE MOST OBSERVABLE, LIKE
FLAPPING OR LOOKING OUT OF THE
CORNER OF YOUR EYE.
BUT PROBABLY IN THE LONG RUN
WHAT MAKES A BIGGER DIFFERENCE
IS THE ABSENCE OR DIMINUTION OF
OTHER BEHAVIORS LIKE QUICK
ATTENTION TO PEOPLE.
AND WE NEED TO REMEMBER BOTH OF
THOSE THINGS, BECAUSE IT'S
REALLY -- WHEN YOU START MAKING
LISTS, IT'S FAR EASIER TO MAKE
LISTS AND GET RELIABLE FOR THE
PREBSPRESENCE OF THINGS, BUT THE
THINGS CHANGE MORE
DEVELOPMENTALLY, AND THEY HAVE A
MUCH MORE MINOR IMPACT ON
PEOPLE'S LIVES.
EVEN IF YOU REALLY HAVE TO FLAP
WHEN YOU'RE 30, YOU CAN GO IN
THE BATHROOM AND FLAP.
YOU CAN LEARN THAT.
SO IT ALSO MEANS THAT WHEN WE
MEASURE THINGS, WE HAVE TO HAVE
CONTEXT.
I THINK THAT'S BEEN A THEME
TODAY TOO.
THE IDEA THAT YOU CAN'T -- YOU
WANT TO GET INFORMATION OVER
LOTS OF DIFFERENT SOURCES.
THIS IS THE CVI -- I'M GOING TO
FORGET THE NAME OF THE
INTERVIEW, BUT THE INTERVIEW,
THE OBSERVATION, BUT IT CAN'T BE
INDEPENDENT OF CONTEXT.
BECAUSE I CAN CREATE A CONTEXT
THAT ALL OF YOU WOULD LOOK
AUTISTIC IN.
I COULD ALSO CREATE A CONTEXT,
EVERY KID I SEE WHO LOOKS NORMAL
FOR 20 SECONDS SOMEWHERE IN
THERE.
SO WE HAVE TO BE THINKING ABOUT
CONTEXT, AND I THINK FOR THE
PHYSICIAN, YOU CREATE CONTEXT
ALL THE TIME.
AND THAT'S WHAT A LOT OF OUR
BLOOD TESTS ARE ADD THINGS.
AND THINGS.
BUT OFTEN WHEN WE GET TO MORE
SOCIAL THINGS, WE FORGET THAT
AND WE THINK ABOUT THE CONTEXT
OF LIKE AN OFFICE VISIT.
>> WE HAVE ONE MINUTE.
>> OKAY.
SO I THINK WE GET INDIVIDUAL
DIFFERENCES AND WE'VE TALKED
ABOUT THIS ALREADY, IN SEVERITY
OF SYMPTOMS, IN FAMILIES'
PRIORITY AND RESOURCES, WE
HAVEN'T TALKED ABOUT THAT SO
MUCH TODAY, BUT CERTAINLY IN
AUTISM.
THERE ARE FAMILIES THAT WANT TO
PROTECT THEIR KIDS, FAMILIES
THAT WANT TO PUSH THEIR KIDS,
THERE'S FAMILIES THAT HAVE NO
TIME AND ARE DESPERATE.
AND IN OTHER ASPECTS OF
DEVELOPMENT, BECAUSE YOU'RE
GOING TO HAVE KIDS WHO, AS I
SAID, HAVE CP OR ARE VERY SMART
OR NOT VERY SMART.
AND AT LEAST IN AUTISM, THE
AVAILABILITY OF MEDICAL
TREATMENTS, MEDICINES, CAN MAKE
A REAL DIFFERENCE, BUT THEY
DON'T TREAT THE AUTISM.
SO BURNING ISSUES, HOW BROAD
SHOULD THE DIAGNOSIS BE?
DO YOU WANT TO HAVE SOMETHING
THAT'S VERY SENSITIVE BUT MAYBE
NOT VERY SPECIFIC?
CAN YOU DO SYMPTOM COUNTS?
IN AUTISM, MOSTLY NOT, BECAUSE
THEN WHAT YOU GET ARE
DEVELOPMENTAL LEVELS.
CAN NEUROBIOLOGICAL MARKERS
HELP?
WE HOPE SO.
BUT SO FAR, THEY HAVEN'T, WITH
MILLIONS OF DOLLARS IN THERE,
NOT ONE NEUROBIOLOGICAL MARKER
HAS REALLY MADE A DIFFERENCE.
WHERE DOES IMPAIRMENT FIT?
I THINK SOME OF THE SPEAKERS
HAVE TALKED ABOUT THAT.
AND THEN THE SOCIAL JUSTICE OF
WHO ARE WE TALKING ABOUT, WHITE
UPPER MIDDLE CLASS KIDS?
ALL RIGHT.
I'M JUST GOING TO SAY AND THEN
I'LL STOP THAT, I MEAN, THE
OVERLAP BETWEEN AUTISM AND
VISUAL IMPAIRMENTS IS VERY
INTERESTING.
FOR YEARS, PEOPLE HAVE SAID THAT
KIDS -- AND MAYBE THESE AREN'T
THE KIDS WITH CVI, BUT THAT KIDS
WHO -- PARTICULARLY KID WHO ARE
TRULY BLIND OR REALLY CAN'T SEE
DO A LOT OF THINGS THAT LOOK
LIKE AUTISTIC KIDS.
MANY OF THOSE DECREASED OVER
TIME.
MANY OF THOSE KIDS GET CALLED
AUTISTIC, AS FAR AS I CAN
UNDERSTAND, IF KIDS TRULY CANNOT
SEE AT ALL AND HAVE SEVERE
INTELLECTUAL DISABILITY, THE
CHANCES OF THEM GETTING CALLED
AUTISTIC ARE SO HIGH.
ONCE THEY CAN TALK, IT
BECOMES -- IT'S A DEVELOPMENTAL
PHENOMENON WHERE YOU MAY HAVE
KIDS WHO, FOR EXAMPLE, REFER TO
THEMSELVES AS YOU OR BY NAME,
WHEN THEIR 5, BUT GROW OUT OF
IT.
SO WE HAVE TO BE VERY CAREFUL.
AND WE ALSO HAVE THINGS THAT ARE
PROBABLY JUST LEARNED, BECAUSE,
AGAIN, SORT OF RELATED TO CVI,
IF YOU PICK UP SOCIAL CUES, NO
WONDER YOU'RE MISSING THE POINT
SOMETIMES.
SO LET ME STOP THERE SO I'M NOT
USING UP OTHER PEOPLE'S TIME.
AND I CAN'T EACH E EVEN GET -- .
AND JUST TO SAY, I THINK IN CVI
AS WELL AS AUTISM THAT DIAGNOSIS
IS THE FIRST STEP.
I MEAN, WE'VE HEARD A LOT OF
SCHOOLS TALKING ABOUT WHAT DO
THEY ACTUALLY DO, BUT PEOPLE GET
VERY CAUGHT UP IN WHO IS
DIAGNOSING AUTISM.
IT IS A TICKET IN THE U.S. TO
INSURANCE, BUT IT NOT A TICKET
TO A PARTICULAR TREATMENT
BECAUSE THERE IS NO ONE
TREATMENT.
ANYWAY, LET ME STOP THERE AND
THANK YOU VERY MUCH FOR INVITING
ME.
[APPLAUSE]
>> OUR NEXT PRESENTATION IS ALSO
A RECORDING.
OUR NEXT PRESENTER IS DR. ELISA
FAZZI, SOMEONE I CONSIDER NOT
ONLY A FRIEND AND A COLLEAGUE
BUT ALSO A MENTOR.
PROFESSOR OF CHILD
NEUROPSYCHIATRY AND DIRECTOR OF
THE CHILD AND ADOLESCENT
NEUROPSYCHIATRY UNIT AT THE
UNIVERSITY OF BRESCIA, CIVIL
HOSPITAL BRESCIA, ITALY AS WELL.
I WANT TO MAKE A COMMENT.
YOU'LL NOTICE HER TITLE.
SHE IS A CHILD NEUROPSYCH
TERRORIST, AND ITALY IS ACTUALLY
QUITE UNIQUE, BECAUSE IT'S ONE
OF THE FEW COUNTRIES IN THE
WORLD WHERE THEY DID NOT
SEPARATE NEUROLOGY FROM
PSYCHIATRY AT CHILDREN'S LEVEL
SO THEY'RE QUITE UNIQUE IN THE
IDEA THAT IF YOU WANT TO
UNDERSTAND DEVELOPMENT, YOU HAVE
TO UNDERSTAND THE STRUCTURE AND
THE FUNCTION.
SO I THINK SHE COMES WITH A
VERY, VERY INTERESTING
PERSPECTIVE WHICH SHE WILL SHARE
WITH US.
QUICK SHOUT OUT TO ALL MY
FRIENDS BACK IN BRESCIA.
THANK YOU.
>> THIS IS OUR CENTER IN ITALY,
LOCATED WITHIN THE CHILD
NEUROLOGY DEPARTMENT IN BRESCIA
HOSPITAL.
THERE AN INTERDISCIPLINARY TEA
TEAM -- PEDIATRIC NEUROLOGISTS,
PSYCHOLOGISTS, AND DEVELOPMENTAL
THERAPISTS ASSESSES EACH CHILD
WITH THE PROTOCOL BASED ON A
CAREFUL EVALUATION OF ASPECTS
USING TESTS APPROPRIATE FOR
FUNCTION, EVALUATION APPROACH MO
KEL IS INTERDISCIPLINARY, AND
ALLOWS TO DEFINE THE OPERATION
PROFILE OF EVERY CHILD WITH
VISUAL PROBLEMS EVEN ASSOCIATED
WITH THE COMPLEX
NEURODEVELOPMENTAL DISABILITY
IN -- AREAS OF DEVELOPMENT.
THE VISUAL FUNCTION CONSISTS OF
SEVERAL FUNCTIONS.
IT ALLOWS -- TO SEE WITH THEIR
EYE TO PERCEIVE AND EXPLORE WITH
THE PRIMARY VISUAL PATHWAY AND
OCULAR MOTOR GAZE AND THUS KNOW
OUR ENVIRONMENT, LOCATING AND
RECOGNIZING OBJECTS.
THESE COMPONENTS ARE LINKED TO
FUNCTION OF DIFFERENT STRUCTURES
OVER THE VISUAL PATHWAYS.
ACCORDING TO THIS MODEL, THIS IS
THE SPECTRUM OF VISUAL
IMPAIRMENT WHICH CONSIDERS OUR
EVALUATION IS COMPLETED BY A
NEUROLOGICAL EXAM, AND THEN
ASSESSMENT OF OTHER
NEURODEVELOPMENTAL SKILLS SUCH
AS NEUROMOTOR COGNITIVE
COMMUNICATIVE AND BEHAVIORAL
PERFORMANCES TO TEST --
VALIDATED.
THIS IS AN EXAMPLE OF OUR
PROTOCOL.
WE PERFORM A COMBINATION OF
BEHAVIORAL VISUAL TESTS SUCH A
AS -- GENETIC NARROW
PHYSIOLOGICAL EXAMS COMPLETE OUR
PROTOCOL ACCORDING TO THE
CLINICAL NEEDS OF EVERY CHILD.
FOR A MORE DETAILED ACCOUNT OF
THE PROTOCOL, HERE ARE TWO
SLIDES THAT TELL THE STORY IF
YOU ARE INTERESTED TO GO DEEPLY
IN OUR -- THIS IS EVALUATION --
STARTING FROM OUR CONCEPTUAL
MOTOR -- VISUAL IMPAIRMENT FROM
STUDIES WE DEVELOPED A YOUR
LOGICAL ASSESSMENT OF VISUAL
FUNCTION.
IT IS MADE UP OF THREE MAIN
SECTIONS.
OCULAR VISUAL COMPONENT, MOTOR
VISUAL COMPONENT AND BASIC
VISUAL FUNCTIONS, WHICH ALLOW TO
OBTAIN A DETAILED COMPLETE
ANALYSIS OF VISUAL FUNCTION.
IT COULD BE RELATED TO DIFFERENT
LABELS OF INVOLVEMENT OF THE
VISUAL PATHWAY.
THIS IS AN EXAMPLE, A PRETERM
LITTLE NEWBORN, YOU CAN SEE HE
CAN FIX, FOLLOW, HE IS VERY
ATTRACTED BY HUMAN FACE.
AND HE FIXES -- VERY INTERESTED.
THIS EVALUATION IS EASY TO
PERFORM, NOT DISTURBING THE
INFANT, YOU CAN SEE ALSO IS IS A
SACCADE OF ATTRACTION.
ACCORDING TO OUR STATISTICAL
ANALYSIS, WE DEMONSTRATED THAT
THIS PARTICULAR -- THESE
ITEMS -- THE POTENTIAL --
DISCRIMINATES NEWBORN WITH AND
WITHOUT BRAIN LESION
DEMONSTRATED BY ULTRASOUND SCAN.
SO WE CONCLUDED THAT VISUAL
FUNCTION OF NEWBORNS IS
IMPORTANT, SENSITIVE --
NEUROLOGICAL IMPAIRMENT PROVIDES
INFORMATION ON THE EARLY
FUNCTIONING OF THE VISUAL SYSTEM
IS ABLE TO DISCRIMINATE THE
MARKERS -- AND COULD INTEGRATE
OPT THAT WILL MO LOGIC AND
NEUROLOGIC EVALUATION OF
NEWBORNS.
OUR EVALUATION PROTOCOL ALSO
FACILITATED THE DEVELOPMENT OF
AN EARLY INTERVENTION BASED ON A
VISUAL TRAINING TO PROMOTE NOT
ONLY VISUAL FUNCTION AND -- BUT
ALSO ALL ASPECTS OF
NEURODEVELOPMENT.
THE EFFECTIVENESS OF THIS
EARLY -- IS PRESENTED IN THIS
STUDY.
EARLY VISUAL TRAINING AND
ENVIRONMENTAL ADAMTION ARE
ASSOCIATED WITH ENHANCED VISUAL
ACUITY AND SMOOTH PR SUIT --
SKILLS.
OUR TRAINING PROGRAM AIMS TO
ADAPT MICRO AND MACRO
ENVIRONMENT USING LIGHTING,
OPTIMAL DISTANCE, MOTOR SENSORY
TARGET TO ANNOUNCE VISUAL
POTENTIAL, TO TRAIN OCULAR MOTOR
FUNCTION SUCH AS FIXATION,
SMOOTH PURSUIT AND SACCADES.
TO PROMOTE RESEARCH STRATEGY AND
ENVIRONMENTAL EXPLORATION.
SUPPORTING THE INTEGRATION OF
THE OTHER SENSORY CHANNELS SUCH
AS -- WITH GLOBAL AIM TO PROMOTE
OVERALL INFANT NEURODEVELOPMENT.
IN A COMMUNICATIVE CONTEXT.
THIS IS AN EXAMPLE OF A CASE
THAT WE FOLLOW WITH THE TRAINING
FOR SIX MONTHS, THREE TIMES A
WEEK.
THIS IS A -- ONE, PRETERM BABY
AT THREE MONTHS, ULTRASOUND
POSTERIOR -- YOU CAN SEE SEVERE
VISUAL DEFICIT.
-- POSITION, VISUAL ACUITY IS
NOT MEASURABLE.
HE IS NOT INTERESTED ALSO IN THE
BRIGHT LIGHT, PARTICULARLY THE
INTERESTING OBJECT, AND HE'S NOT
ABLE TO FIXATE.
THIS IS A LITTLE EXAMPLE OF OUR
TRAINING.
YOU SEE THAT YOU USE A CHESS
BOARD FOR IMPROVED VISUAL
ATTENTION TO IMPROVE YOUR VISUAL
FIELD.
YOU CAN USE MOTOR SENSORY TARGET
AND YOU CAN ALSO PRO POPES
OBJECT TO THE OTHER SIDE TO
FACILITATE THE -- OF THAT.
AND YOU CAN SEE ALSO IMPROVEMENT
OF FIXATION WITH THE UTILIZATION
OF UMA PHASE.
AND THIS IS -- THIS IS THE
CHILD, INFANT, 9 MONTHS AFTER
SIX MONTH OF TRAINING, YOU CAN
SEE A LOT OF FUNCTIONAL IMPROVE.
YOU CAN SEE HE'S MORE INTERESTED
AND IS ABLE ALSO TO GRASP THE
OBJECT.
AND HE'S VERY IMPROVED ALSO I
IN -- SO OUR MULTIDISCIPLINARY
APPROACH HAS LED TO -- VISUAL
ASSESSMENT THAT CAN BE EXTENDED
EVEN TO NEWBORNS FROM THE FIRST
SPACE OF LIFE.
-- TO DETECT -- THIS CAN SERVE
AS A MARKER NOT ONLY FOR VISUAL
DYSFUNCTION BUT ALSO FOR NEURAL
DEVELOPMENT ISSUES.
IT CAN BE USEFUL TO IMPLEMENT
AND INDIVIDUALIZE INTENSIVE
INTERVENTION AS EARLY AS
POSSIBLE.
-- AND FOR THE EMPOWERMENT OF
PARENT-CHILD INTERACTION.
I CONCLUDE THANKING ALL THE
COLLABORATORS AND TEAMS WHICH
ARE VERY SUPPORTIVE AND
INTERESTING IN THE FIELD OF
VISUAL IMPAIRMENT, AND I THANK
YOU FOR YOUR KIND ATTENTION.
[APPLAUSE]
>> NEXT WE HAVE KAREN HARPSTER,
ASSISTANT PROFESSOR OF
OCCUPATIONAL THERAPY AND
PHYSICAL THERAPY AT CINCINNATI
CHILDREN'S HOSPITAL, AND SHE'LL
BE SPEAKING ABOUT THE IMPACT OF
MULTIPLE DISABILITIES ON
INTERVENTIONS IN CHILDREN WITH
CVI.
>> JUST TO LET YOU GUYS KNOW
BECAUSE WE'RE RUNNING A LITTLE
BEHIND WE'RE GOING TO CUT OUR
DISCUSSION DOWN TO 10 MINUTES
AND THEN WE'LL SKIP OUR BREAK,
BUT IF YOU NEED TO GO TO THE
RESTROOM, YOU CAN DO THAT AS WE
START THE FOCUS GROUP.
>> SORRY FOR THE DELAY.
I'M KAREN HARPS TER.
I'M GOING TO TALK ABOUT THE
IMPACT OF MULTIPLE DISABILITIES
ON INTERVENTIONS IN CHILDREN
WITH CVI.
I'M A MIDDLE AGED WOMAN WITH A
BLACK JACKET AND BLACK SHIRT
WITH SPOTS.
CHILDREN WITH MULTIPLE
DISABILITIES OFTEN ENCOUNTER
DIFFICULTIES ACCESSING AND
PARTICIPATING IN EVERYDAY
ACTIVITIES SUCH AS SELF-CARE,
PLAY, SCHOOL ACTIVITIES, SPORTS,
OTHER LEISURE ACTIVITIES, AND
THESE ARE THINGS THAT
OCCUPATIONAL THERAPISTS CALL
OCCUPATIONS.
CHILDREN WITH MULTIPLE
DISABILITIES ARE AT HIGHER RISK
FOR FUNCTIONAL VISION IMPAIRMENT
SUCH AS CVI, AND AS WE KNOW, IF
YOU HAVE A FUNCTIONAL VISION
IMPAIRMENT, IT IS GOING TO
AFFECT ALL ASPECTS OF YOUR
LEARNING AND DEVELOPMENT.
THEREFORE, THE EARLIER WE CAN
FIGURE OUT THAT THE CHILD HAS A
FUNCTIONAL VISION IMPAIRMENT,
THE BETTER OUTCOME.
SO THIS IS AN EXAMPLE -- THIS IS
A GIRL WITH CP AND CVI.
SHE WAS REFERRED TO OCCUPATION
MALL THERAPY BECAUSE SHE WASN'T
REACHING FOR A TOY LIKE HER MOM
THOUGHT SHE SHOULD.
WITH THE DIAGNOSIS OF CVI, HER
THERAPIST KNEW TO ADAPT THE
ENVIRONMENT IN A WAY TO SUPPORT
HER TO BE ABLE TO REACH FOR THE
TOYS AND WITHIN A SESSION, SHE
WAS REACHING FOR THE TOY.
SO IT JUST GOES TO SHOW US HOW
IMPORTANT UNDERSTANDING THAT A
CHILD HAS A CVI DIAGNOSIS OR A
FUNCTIONAL VISION IMPAIRMENT HOW
WE NEED TO ADAPT THE ENVIRONMENT
TO SUPPORT THE CHILD'S VISION.
THE GOALS OF AN OCCUPATIONAL
THERAPIST ARE FIRST TO MAXIMIZE
INDEPENDENCE OF THE FUNCTIONAL
SKILLS FOR A CHILD WITH MULTIPLE
DISABILITY.
INCREASE PARTICIPATION IN DAILY
ACTIVITY THAT ARE IMPORTANT TO
THE CHILD AND THE FAMILY.
WHILE MAKING SURE THEY HAVE
ACCESS TO THE ENVIRONMENTS, BOTH
VISUALLY AN COGNITIVELY.
BEING ABLE TO PURSUE MEANINGFUL
OCCUPATIONS ENHANCES A CHILD'S
PHYSICAL, MENTAL AND EMOTIONAL
WELL-BEING.
THIS IS A FRAMEWORK THAT OTs
USE WITH CHILDREN WITH MULTIPLE
DISABILITIES BOTH WITH AND
WITHOUT CVI.
IT'S CALLED A PERSON ENVIRONMENT
OCCUPATION OR PEO MODEL.
THIS MODEL FOCUSES ON THE
INTERACTION BETWEEN THE PERSON,
THE ENVIRONMENT AND
PARTICIPATION IN ACTIVITIES THAT
ARE VALUED TO THE CHILD AND TO
FAMILY.
WHEN WE'RE THINKING ABOUT THE
PERSON, THE OT UTILIZES A
HOLISTIC APPROACH CONSIDERING
BOTH THE PHYSICAL, COGNITIVE,
EMOTIONAL AND SOCIAL ASPECTS OF
THE CHILD'S DEVELOPMENT.
THIS COMPREHENSIVE PERSPECTIVE
IS ESSENTIAL ESPECIALLY DEALING
WITH CHILDREN WHO HAVE COMPLEX
NEEDS.
ADDITIONALLY WE CONSIDER THE
CHILD'S CHRONOLOGICAL DEVELOP
MEDEVELOPMENTAL AGE, AND OTs GET
TO KNOW THE CHILD AND THE FAMILY
TO UNDERSTAND WHAT THEIR GOALS
ARE AND WHAT OCCUPATIONS IT IS
THAT THEY WANT TO IMPROVE.
THE ENVIRONMENT INCLUDES BOTH
THE EXTERNAL FACTORS THAT
INFLUENCE A CHILD'S ABILITY TO
COMPLETE THEIR VALUED
ACTIVITIES.
IT'S IMPORTANT TO ANALYZE HOW
THE CHILD'S ABILITIES AND
LIMITATIONS AFFECT THE
INTERACTIONS WITH THE
ENVIRONMENT AND WHETHER THEY
FACILITATE OR HINDER ENGAGEMENT
IN THE ACTIVITY.
WE SHOULD THINK ABOUT ALL THE
ENVIRONMENTS THAT THE CHILD WILL
NEED TO PARTICIPATE IN THEIR
VALUED ACTIVITY.
WE WANT TO MAKE SURE THAT THEY
CAN GENERALIZE THE SKILL INTO
ALL ENVIRONMENTS THEY'RE GOING
TO BE IN.
FOR EXAMPLE, IF A CHILD HAS A
GOAL TO SOCIALIZE WITH THEIR
FRIENDS, WE NEED TO CONSIDER ALL
THE ENVIRONMENTS IN WHICH THIS
WOULD HAPPEN.
IN ADDITION TO THINKING ABOUT
THE LOCATION OF THE ENVIRONMENT,
WE ALSO WANT TO THINK ABOUT THE
COMPONENTS OF THE ENVIRONMENT,
AND HOW THEY SUPPORT OR
INTERFERE WITH COMPLETING THE
ACTIVITY.
THE COMPONENTS MIGHT INCLUDE
THINGS LIKE THE LIGHTING, THE
NUMBER OF CHILDREN PRESENT, THE
COMPLEXITY OR NOVELTY OF THE
ENVIRONMENT.
IT MIGHT ALSO BE THAT -- IT
MIGHT ALSO BE POSSIBLE THAT A
CHILD HAS NO DIFFICULTY
SOCIALIZING WITH A FRIEND AT HER
HOUSE BUT THEN HAS DIFFICULTY
SOCIALIZING WITH THAT SAME
FRIEND IN SCHOOL, IN A BUSY
LUNCHROOM.
THE FACTORS THAT MIGHT INFLUENCE
HER ABILITY TO SOCIALIZE IN
SCHOOL COULD BE THE NOISE LEVEL
AND BUSYNESS OF THE LUNCHROOM.
AS A TEAM, THE CHILD, THE FAMILY
AND ALL THE PEOPLE INVOLVED --
ALL THE PROFESSIONALS INVOLVED
WITH THE CHILD NEED TO IDENTIFY
MODIFICATIONS IN THE ENVIRONMENT
OR THE ACTIVITY TO PROMOTE
SUCCESS.
OTs DISCUSS WITH THE CHILD AND
THE FAMILY THEIR PRIORITIES AND
WHAT OCCUPATIONS THEY WANT TO
WORK ON IN TREATMENT.
THE TREATMENT PLAN IS BASED ON
THESE VALUED ACTIVITIES AND IS
DEVELOPED IN PARTNERSHIP WITH
THE CHILD AND THE FAMILY.
ALSO UTILIZING MULTIDISCIPLINARY
COLLABORATIVE APPROACH IS KEY.
OTs PARTNER WITH THE
INDIVIDUALS WHO WORK WITH THE
CHILD ON THE IDENTIFIED GOALS.
FOR EXAMPLE, IF THE GOAL WAS TO
IMPROVE THE CHILD'S PERFORMANCE,
THE OT WOULD PARTNER WITH THE
CHILD'S TEACHER, AND THE
PARAPROFESSIONALS, TO DEVELOP A
PLAN TO ACHIEVE THE GOAL.
INTERVENTIONS SHOULD BE TAILORED
TO THE SPECIFIC ABILITIES OF THE
CHILD.
A PERSONALIZED APPROACH IS
IMPORTANT TO CHILDREN WITH
MULTIPLE DISABILITIES AS IT
ALLOWS FOR FLEXIBILITY AND
ADAPTABILITY OF THE TREATMENT
PLAN.
THE INTERVENTION PLAN IS
TAILORED AROUND THE CHILD'S
GOALS USING A STRENGTH-BASED
APROA. I KNOW WE'VE HEARD THAT
ALREADY TODAY, FOCUSING ON THE
CHILD'S STRENGTH IN ORDER TO
ENHANCE THEIR PERFORMANCE IN AN
ACTIVITY.
THEN WE FOCUS ON A TASK ANALYSIS
TO BREAK DOWN THE COMPONENTS OF
THE ACTIVITY AND IDENTIFY THE
CHILD'S STRENGTH AND HOW THEY
CAN BE USED TO ACHIEVE A GOAL.
AND THEN WHAT ARE THEIR DEFICITS
THAT WE SHOULD WORK ON IN
THERAPY?
MEASURING INTERVENTION
SUCCESS -- WE SHOULD INCLUDE A
FUNCTIONAL OUTCOME MEASURE.
THERE ARE A COUPLE EXAMPLES
HERE, FOR EXAMPLE, THE CANADIAN
OCCUPATIONAL PERFORMANCE
MEASURE, IMPLEMENTING
EVIDENCE-BASED INTERVENTION
SHOULD BE OUR PRIORITY.
HOWEVER, WE ALL KNOW THAT FOR
CHILDREN WITH CVI, THERE ARE
ONLY A FEW RANDOMIZED CONTROL
TRIALS AND SEVERAL LOWER LEVEL
STUDIES TO GUIDE INTERVENTION.
THEREFORE WE UTILIZE IN THOSE
THAT -- I'LL TALK ABOUT SOME OF
THE APPROACHES WE CAN USE IN
MORE DETAIL.
THE FIRST BEING ADAPTATIONS TO
THE CHILD'S ENVIRONMENT OR THEIR
ACTIVITY.
SPECIFICALLY FOR CHILDREN WITH
CVI, WE MAKE ENVIRONMENTAL AND
ACTIVITY ADAPTATIONS TO SUPPORT
THE CHILD'S VISION.
ACTIVITY ANALYSIS CAN BE USED TO
ADAPT THE ACTIVITY TO MATCH THE
CHILD'S VISUAL, MOTOR AND
COGNITIVE NEEDS.
WE THEN GRADE THE ACTIVITY TO
WORK TOWARDS INDEPENDENCE IN
SMALL STEPS.
AS CHILDREN PROGRESS, WE
EVALUATE PROGRESS, REA ASSESS
THEIR GOALS, REVISE THE
TREATMENT PLAN, INTERVENE AND
RE-EVALUATE, USUALLY A
CONTINUOUS LOOP.
EDUCATION MIGHT INCLUDE THINGS
LIKE BEHAVIORAL CHARACTERISTICS
OF CVI, HOW TO ENHANCE VISUAL
ATTENTION DURING FUNCTIONAL
ACTIVITY.
THIS MIGHT INVOLVE MAKING SURE
THE CHILD'S CAREGIVER
UNDERSTANDS HOW TO MATCH THE
ACTIVITY DEMANDS TO THE CHILD'S
FUNCTIONAL VISION, AND ACTIVITY
ENVIRONMENTAL MODIFICATIONS AND
HOW THEY MIGHT VARY THROUGHOUT
THE DAY.
WE'VE ALREADY HEARD A LOT ABOUT
FATIGUE AND HOW THAT'S GOING TO
AFFECT THE CHILD'S ABILITY TO
CARRY OUT THE ACTIVITY.
AND ADAPTATIONS THAT MIGHT
CHANGE DEPENDING ON THE
ENVIRONMENT, SO SENSORY
ENVIRONMENT MIGHT BE DIFFERENT,
IT MIGHT BE A NEW ENVIRONMENT,
THERE COULD BE HIGH LEVELS OF
DISTRACTION, SO WE NEED TO THINK
ABOUT THOSE THINGS AND EDUCATE
EVERYBODY ON THE CHILD'S TEAM.
USING EQUIPMENT AND TECHNOLOGY
CAN ENHANCE FUNCTIONAL
PERFORMANCE.
THERE ARE VARIETY OF POSITIONERS
AND SEATING AT THE VICES TO
SUPPORT PROPER SEATING FOR THE
CHILD WITH MULTIPLE DISABILITIES
AND CVI.
ADDITIONALLY, WE CAN USE
ASSISTIVE TECHNOLOGY TO SUPPORT
FUNCTIONAL PERFORMANCE.
SOME TECHNOLOGY IS LOW TECH THAT
MIGHT JUST BE AN ADAPTIVE
UTENSIL OR SOMETHING HIGH-TECH
LIKE A COMMUNICATION DEVICE.
>> WE HAVE ONE MINUTE.
>> OKAY.
OTs USE TASK ANALYSIS AND
TASK-SPECIFIC TRAINING TO
PROMOTE MOTOR SKILLS AND VISUAL
SKILLS, LEADING TO IMPROVEMENT
IN MEANINGFUL OCCUPATION.
SETTING UP THE ENVIRONMENT TO
PROMOTE SELF-INITIATED ACTIVE
MOVEMENTS IS A GREAT WAY TO
PROMOTE MOTOR SKILLS.
RECENT EVIDENCE SHOWS THAT
ENRICHING THE ENVIRONMENT TO
PROMOTE ACTIVE MOVEMENTS LEADS
TO SELF-DISCOVERY FOR CHILDREN
AND ENHANCEMENT OF SKILLS.
OTs ENCOURAGE CAREGIVERS TO
INCORPORATE INTERVENTIONS INTO
THEIR DAILY ROUTINES TO MAKE
THEM MO MORE MANAGEABLE AND PROE
DAILY PRACTICE.
WE UTILIZE THESE INTERVENTION
PRINCIPLES TOGETHER WITH
CHILDREN WITH MULTIPLE
DISABILITIES AND CVI TO MAXIMIZE
THEIR FUNCTIONAL IND PENSION.
THANKS FOR -- FUNCTIONAL INDEP.
THANKS FOR YOUR TIE.
[APPLAUSE]
>> THANK YOU.
NEXT WE HAVE DR. RICHARD BOWMAN,
CONSULTANT AND ASSOCIATE
PROFESSOR IN DEPARTMENT OF
OPHTHALMOLOGY AT THE GREAT
ORMOND STREET HOSPITAL, HE'LL BE
SPEAKING ABOUT THE EUROPEAN
CONSORTIUM FOR CVI.
>> THANKS VERY MUCH, GOOD
AFTERNOON.
LAST PRESENTATION OF THE DAY, I
THINK.
MY APPEARANCE IS BRITISH,
NEITHER ME NOR MY FELLOW BRIT
JOHN ARE WEARING A TIE, I'M
AFRAID.
APOLOGIES FOR DRAGGING THE
SARTORIAL TONE DOWN ON BEHALF OF
THE BRITS.
I'M REPRESENTING THE EUROPEAN
CONSENSUS -- OH, YEAH.
SORRY.
I'LL TRY TO RESTRAIN MYSELF.
SO WE'RE TRYING TO DO THE SAME
SORT OF THING IN EUROPE.
AND THIS IS OUR GROUP LED BY
NAOMI DALE WHO'S A PSYCHOLOGIST
AND A NEUROLOGIST.
THAT IMMEDIATELY SUGGESTS A
SLIGHT DIFFERENCE IN THE
PROFESSIONAL BRE BREAKDOWN OF TE
PEOPLE HERE VERSUS IN EUROPE.
SO DEVELOPMENTAL PEDIATRICIANS,
PEDIATRIC NEUROLOGISTS AND
PSYCHOLOGISTS AS WELL AS
OPHTHALMOLOGISTS AND KORINA,
WHO'S OUR HONORARY EUROPEAN AND
HONORARY BRAIN SCIENTIST AS
WELL.
SO THE OVERALL BIG QUESTIONS ARE
THE SAME, WHAT'S THE CORE
FUNCTIONAL DEFICIT WITH CVI,
DOES THE REGION OF THE BRAIN
AFFECTED MAKE A DIFFERENCE.
AND WHAT ARE THE BEST ASSESSMENT
AND DIAGNOSTIC TOOLS?
JUST THIS AFTERNOON, WITHIN THIS
ROOM, WE'VE SEEN EIGHT DIFFERENT
PEOPLE PRESENT EIGHT DIFFERENT
DIAGNOSTIC TOOLS, ALL OF WHICH
LOOK GOOD.
BUT HOW DO WE DECIDE WHAT IS THE
BEST ONE TO MOVE FORWARD WITH.
CAN WE REACH A CONSENSUS ON IT?
WHICH STAWE STARTED WITH A DEFIF
CVI, WE PUBLISHED IT SIX YEARS
AGO.
IT DOESN'T REALLY SAY MUCH MORE
CVI, VEER RAL VI CEREBRAL IMPAI.
THE QUESTION IS HOW CAN WE DYING
KNOWS IT AND MATCH INTERVENTIONS
TO THEM.
SO WE'RE TRYING TO TAKE IT A BIT
FURTHER THAN WHAT THE DEFINITION
IS, AND THE STRUCTURE OF THE
EUROPEAN CONSENSUS GROUP IS A
GROUP OF EXPERTS, SO KIND OF
TALKING SHOP TO START WITH.
THEN TO TRY AND BASE IT ON
EVIDENCE, A SYSTEMATIC REVIEW,
WHICH WE GOT A BIT OF MONEY FOR.
KARINA HAS LED ON THAT AND WAS
GOING TO TALK ABOUT IT BUT WE'VE
RUN OUT OF TIME SO YOU CAN ASK
HER ABOUT THAT AFTERWARDS.
AND THEN WE'RE GOING TO CONSULT
PATIENT, FAMILIES AS WELL, SO
THOSE THREE DIMENSIONS WILL
HOPEFULLY LEAD US TO SOME
EVIDENCE-BASED GUIDELINES FOR
PRACTICE AROUND ASSESSMENT, IT
SAYS INTERVENTION BUT ASSESSMENT
AND DIAGNOSIS AT THIS STAGE.
INTERVENTION WILL COME LATER.
THE GENERAL PRINCIPLES BY WHICH
THE GROUPS REPRESENTED IN THE
EUROPEAN CONSENSUS GROUP OPERATE
BY IMPORTANCE ON
MULTIDISCIPLINARY APPROACH USING
SCIENTIFICALLY VALIDATED
STANDARD ASSESSMENTS, AND TAKING
INTO CONSIDERATION THE
DEVELOPMENTAL TRAJECTORY OF
CHILDREN SO THAT WE COME UP WITH
AN INDIVIDUALIZED COMPREHENSIVE
ASSESSMENT FOR EACH CHILD.
OF COURSE MANY OF YOU HAVE
TOUCHED ON THOSE DIMENSIONS IN
YOUR TALKS THIS AFTERNOON.
SO I'M JUST GOING TO GIVE YOU
SOME EXAMPLES OF SOME OF THE
QUESTIONS THAT WE CAME UP WITH
IN REGARDS TO SCREENING.
I MEAN, THE SCREENING QUESTIONS
ARE OBVIOUS, DO WE HAVE A TOOL
FOR SCREENING?
WHICH GROUPS SHOULD BE -- SHOULD
WE BE DOING TARGETED SCREENING
FOR PARTICULAR GROUPS OR SHOULD
ALL CHILDREN BE SCREENED IF
THERE'S ONE IN EVERY PRIMARY
SCHOOL CLASSROOM.
WE DID A STUDY YEARS AGO ON 8 TO
12-YEAR-OLDS, THEY'VE ALL GONE
THROUGH NEURODEVELOPMENTAL
SCREENING AND PASSED AS NORMAL,
AND THEY ALL HAD NORMAL ACUITY
AND NORMAL IQ, BUT A THIRD OF
THEM SCORED REALLY HIGHLY ON THE
QUESTIONNAIRES WE WERE TALKING
ABOUT EARLIER.
WHEN WE TESTED THEM WITH
PSYCHOPHYSICAL TESTS OF VISUAL
PERCEPTION, THEY DID BADLY ON
THOSE AS WELL, SO IT REALLY WAS
A VISUAL IMPAIRMENT THAT HAD
BEEN MISSED, THEY HAD NORMAL
ACUITY, THAT'S WHY JOHN SAID
EARLIER PROBABLY ONLY ONE IN 50
HAVE BEEN DIAGNOSED.
SO SCREENING IS AN IMPORTANT
TOPIC, AND NEURODEVELOPMENTAL
PEDIATRICIANS, THEY KNOW, THEY
FEEL GUILTY THAT VISION IS NOT
PAID ENOUGH ATTENTION TO IN THE
SCREENING THAT DOES EXIST.
DIAGNOSIS, WHAT ARE THE CORE
TESTS THAT WE SHOULD BE DOING.
AGAIN, WE'VE BEEN TOUCHING ON
THIS WITH ALL OUR PRESENTATIONS.
THE ONE AGAIN THING THAT
PROBABLY HASN'T BEEN MENTIONED
THIS AFTERNOON THAT WE PERHAPS
LOOK MORE AT IN EUROPE IS THESE
FORMAL NEUROPSYCHOLOGICAL TESTS,
THE VISUAL PERCEPTION,
PARTICULARLY IN CHILDREN WHO
HAVE GOOD VISUAL ACUITY WHO TEND
TO PASS ALL THE TESTS WE DEND TO
DTEND TODO IN THE EYE CLINIC.
AS I SAID, WE'VE DONE A COUPLE
OF STUDIES ON THAT QUESTIONN
QUESTIONNAIRE.
I WAS PLEASED TO SEE HE SHOWED
THE CORRELATION WITH THE VP
PARAMETERS, AND WE HAVE ALSO
SHOWN CORRELATION WITH
NEUROPSYCHOLOGICAL TESTS.
THAT IS SOME VALIDATION.
OF COURSE ELECTROPHYSIOLOGY AND
NEUROPSYCHOLOGICAL TESTS CAN BE
DIFFICULT TO ACCESS FOR OUR
CHILDREN, SO THE FACT THAT THAT
SIMPLE QUESTIONNAIRE CAME IN AND
CORRELATES WITH BOTH THOSE
THINGS IS USEFUL.
WHAT ABOUT CLASSIFICATION?
IS IT USEFUL TO CLASSIFY
CHILDREN INTO DIFFERENT TYPES OF
CVI?
WE'VE PROBABLY ALL COME ACROSS
THE CLASSIC DORSAL AND VENTRAL
STREAM CLASSIFICATION.
SHOULD WE BE TRYING TO COME UP
WITH SOMETHING LIKE THE GROSS
MOTOR FUNCTION SCALE FOR
CEREBRAL PALSY?
SHOULD WE NOT COME WITH
PRECONCEPTIONS BUT DO DATA
ANALYSIS AND DO CLUSTER ANALYSIS
AND SEE IF THERE REALLY ARE
DIFFERENT GROUPS THERE.
ONE OF OUR PH.D. STUDENTS TRIED
TO DO THAT, SO SHE HAD A GROUP
OF 40 OR SO ALL CAUSE CVI MILD
TO MODERATE AND ENTERED THOSE
DATA.
SO ACUITY, STEREO, CONTRAST, AND
TWO TESTS OF VISUAL PERCEPTION,
AND JUST LET THE DATA FALL INTO
CLUSTERS, AND SURE ENOUGH, THERE
DID SEEM TO BE TWO CLUSTERS,
BASICALLY MILD AND MODERATE, BUT
IF YOU THEN PLOT THEM, YOU SEE
THERE'S NO GAP BETWEEN THOSE
CLUSTERS.
SO ARE THEY SUBTYPES OR ARE WE
DEALING WITH A SPECTRUM OF
SEVERITY?
WHAT WAS INTERESTING TO ME IS
PROBABLY TOO SMALL TO SEE ON
THAT SLIDE, BUT THE DIFFERENCE
BETWEEN THE MILD AND MODERATE
GROUP WAS VERY SIGNIFICANT
DIFFERENCE IN THE PREVALENCES OF
OCULAR DISORDERS THAT WE WOULD
PICK UP AS OPHTHALMOLOGISTS.
NYSTAGMUS, OPERATIVE NERVE
PROBLEMS.
SO AGAIN WE HAVE TO BE CAREFUL
WITH THAT THOUGHT THAT THERE'S
NO EYE PROBLEM.
WE'VE SAID REPEATEDLY THIS
AFTERNOON, THERE ARE OFTEN
OCULAR ABNORMALITIES, AND IT
SEEMS LIKE THE WORST, THE CVI,
THE WORSE THE OP OPT M OPHTHALMY
QUESTIONS AS WELL.
SHOULD WE BE SCREENING ALL
CHILDREN WITH INTELLECTUAL
DISABILITY, IS ONE DYSFUNCTION
ENOUGH TO TALK ABOUT CVI.
SO IF YOU GO TO A CHILD WHO JUST
STRUGGLES IN CROWDED
ENVIRONMENTS, ARE WE GOING TO
CALL THAT CVI?
IF THEY'VE GOT A PEER -- BUT NO
OTHER PROBLEMS, IS THAT CVI?
TO ME THAT'S A CLEAR YES AS
OPPOSED TO AREA OF VISUAL
PATHWAY, SOME PEOPLE THINK
THERE'S GOT TO BE A BIT MORE
GENERALIZED VISUAL PROCESSING
PROBLEM FOR A DIAGNOSIS OF CVI.
DO YOU NEED ANYTHING OF NOTE IN
THE CLINICAL HISTORY,
PREMATURITY, THE ANSWER TO THAT
IS PROBABLY NO AS WE GAIN MORE
KNOWLEDGE ABOUT GENETIC CAUSES
OF CVI WHERE THERE'S NO APPARENT
HISTORY.
OCULOMOTOR PROBLEMS, I LOVE TO
TALK ABOUT THE EYE MOVEMENTS TO
MEASURE VISION, EMPHASIZING THAT
VISION HAS A MOTOR COMPONENT AS
WELL AS A SENSORY COMPONENT.
BUT I'M PICKING THOSE TWO CAN BE
DIFFICULT.
AND DO WE NEED SYMPTOMS?
SO IF WE START SCREENING PRIMARY
SCHOOL KIDS AND WE FIND THAT
SOMEONE HAS A VISUAL PROBLEM BUT
THEY HAVE NO SYMPTOMS IN
EVERYDAY LIFE, ARE WE GOING TO
GIVE THEM A LABEL OF CVI?
SO THAT'S A GOOD QUESTION AS
WELL.
SO IN FACT --
>> ONE MINUTE.
>> I'M GOING TO INVITE -- I'M
GOING TO MISS OUT THE SYSTEMATIC
REVIEW, BUT I WILL INVITE YOU
ALL TO BECOME HONORARY EUROPEANS
BY CONTRIBUTING.
WHAT WE WANT TO POLL AS MANY
EXPERTS AS WE CAN ABOUT WHETHER
THOSE KIND OF QUESTIONS, AND OF
COURSE THERE ARE MORE QUESTIONS,
I ONLY PRESENTED A FEW, ARE THEY
THE RIGHT QUESTIONS, ARE THEY
MOIMPORTANT QUESTIONS OR HOW WOD
YOU REPHRASE THEM?
AND I'VE GOT A POLLING LINK THAT
JUST TAKES YOU THROUGH THOSE
QUESTIONS AND SAYS DO YOU THINK
THIS IS IMPORTANT, HAVE YOU GOT
ANY COMMENTS.
IF THE ORGANIZERS AGREE, I'LL
SEND THAT OUT FOR ANYONE WHO
WOULD LIKE TO, TO PARTICIPATE.
THANK YOU VERY MUCH.
[APPLAUSE]
>> THANK YOU.
NEXT WE'RE GOING TO MOVE INTO A
DISCUSSION SECTION FOR 10
MINUTES, SO IF ANY OF YOU HAVE
ANY QUESTIONS FOR ANY OF THE
PRIOR SPEAKERS SINCE THE LAST
DISCUSSION, PLEASE FEEL FREE TO
ASK THEM NOW AND OF COURSE YOU
CAN ASK THEM DURING THE FOCUS
GROUPS AFTER THAT OR AT ANY
POINT AFTER BECAUSE WE ONLY HAVE
10 MINUTES.
PLEASE COME UP TO THE MICROPHONE
AND ADDRESS YOUR SPEAKER
DIRECTLY.
>> DR. BOWMAN, YOU'RE NOT OFF
THE HOOK YET.
NO, THAT'S ALL RIGHT.
YOU TALKED ABOUT THE POTENTIAL
CONFOUND OF OCULAR ISSUES AND
HOW THAT IMPACTED SCORES AND
EVALUATION.
IS IT POSSIBLE TO TAKE THOSE
INDIVIDUALS OUT AND DARE I USE
THIS TERM, THINK OF PEURL CVI,
AND WHAT WOULD THOSE OUTCOMES
LOOK LIKE?
>> I SUPPOSE I WOULD MAYBE
CHALLENGE THE PREMISE OF THAT
QUESTION.
I THINK THAT CVI OFTEN DOES HAVE
OCULAR MOTOR PROBLEMS, OPTIC
NERVE PROBLEMS, WE KNOW THE
OPTIC NERVE IS ANATOMICALLY PART
OF THE BRAIN, SO I THINK IT
WOULD ACTUALLY BE A FALSE IDEA
TO REMOVE THOSE.
I THINK WE JUST NEED TO ALLOW
FOR THEM IN ALL OUR ANALYSIS.
THAT'S MY PERSONAL VIEW.
I'M SURE SOME PEOPLE MIGHT
DISAGDISAGREE, BUT --
>> ANY OTHER QUESTIONS?
>> I HAVE AN ANSWER TO THE
PREVIOUS QUESTION.
>.SO YOU ASKED ABOUT MRI AND MRI
IN THE REGISTRY.
SO THERE ARE DEFINITELY A BUNCH
OF EXAMPLES AND MANY OF THEM ARE
NIH-FUNDED SPECIFICALLY FOR
LARGE SCALE DATABASES THAT HAVE
MULTI-SITES THAT USE MR IN
DIFFERENT IMAGING MODALITIES
LIKE PET, THE ALZHEIMER'S
DISEASE INITIATIVE, ALISON BRAIN
COGNITIVE DEVELOPMENT STUDY,
IBIS, YOU KNOW, THERE'S MANY OF
THEM.
AND TO GO ALONG WITH THAT,
BECAUSE THERE ARE MULTIPLE SITE,
THERE ARE ALSO, ON THE COMPUTER
SCIENCE DEVELOPMENT SIDE OF
THINGS, DIFFERENT TOOLS THAT ARE
BEING MADE AVAILABLE AND
DIFFERENT SOFTWARE PACKAGES TO
HELP OVERCOME SOME OF THE
DIFFERENCES IN SCANNER
PROTOCOLS, THINGS LIKE THAT.
PEOPLE ARE ALSO INCLUDING THEM
AS LIKE VARIABLES IN YOUR STATS,
SO THERE ARE DIFFERENT WAYS THAT
YOU CAN HELP SORT OF MITIGATE
AND OR/OR MINIMIZE OR ACCOUNT
FOR THOSE POTENTIAL DIFFERENCES.
THERE'S ALSO A PUSH IN THE
IMAGING FIELD TOO TO ALSO HAVE A
STANDARD DATA FORMAT.
IT CALLED BIDS.
I FORGET WHAT BIDS STANDS FOR
BUT YOU HAVE A NIFTI FILE AND
ALONG WITH THAT A JSON FILE,
IT'S LIKE A HUGE TEXT FILE THAT
GIVES YOUR MR PARAMETERS AS WELL
AS DETAILS RELATED TO LIKE THE
SCANNER ITSELF, YOUR ETR, ECHO,
EVERYTHING, SO YOU CAN THEN GO
IN AND LACK AT SOME OF THE
SPECIFIC VARIABLES.
SO IF YOU DO INCLUDE MR DATA IN
YOUR DATABASE, I WOULD ENCOURAGE
YOU TO HAVE PEOPLE UPLOAD IT IN
BIDS FORMAT SO IT CAN BE MORE
READILY, I THINK, USED.
IT'S LIKE A STANDARD DATA
STRUCTURE IN TERMS OF LIKE THE
FILE PATHS.
>> [INAUDIBLE]
>> SO DICOM IS GOOD, BUT THERE
ARE A COUPLE LIMITATIONS.
THERE ARE DIFFERENT TYPES OF
DICOMS, THERE ARE ENHANCED AND
CLASSIC.
CLASSIC DICOMS FOR RESTING STATE
SCAN, IN A CLASSIC YOU'RE GOING
TO HAVE THOUSANDS OF IMAGES
WHEREAS WITH THE BIDS, YOU'RE
GOING TO HAVE YOUR NIFTI AND
YOUR TEXT FILE.
SHE SAID THEY CAN ACCOMMODATE
FOR THAT.
YOU CAN USE EITHER BUT THERE'S A
PUSH IN THE FIELD FOR JUST USING
BIDS.
>> BECAUSE IT'S BUILT ON THE
TRAUMATIC BRAIN INJURY, THEY DO
HAVE LOTS OF MRIs AS AN
EXAMPLE SO THEY PROBABLY ALREADY
INCORPORATED THAT.
WE'LL MAKE SURE WE TAKE THAT
INTO ACCOUNT.
THANK YOU.
>> THANK YOU.
I HAVE A QUESTION FOR DR. HOFF.
SO THANK YOU SO MUCH FOR SHOWING
THOSE VIDEOS, THEY WERE REALLY
INTERESTING IN TERMS OF HOW THE
VISUOMOTOR TASK FOR KIDS WITH
CVI.
I'M SORRY WITH CP.
DO THEY HAVE AN EYE EXAMPLE,
WOULD IT BE DIFFERENT IN KIDS
WITH CVI VERSUS IN KIDS WITH CP
ALONE?
>> AT THIS POINT, WE'VE JUST
BEEN DOING -- WE'VE BEEN DOING
VISUAL ACUITY AND WE'VE BEEN
DOING JUST A GENERAL FIELD
TESTING.
I THINK WE ARE LOOKING TO EXPAND
TO DO A MORE COMPREHENSIVE EYE
EXAM WITH MORE MONEY, BUT I
THINK IT'S ALSO HARD BECAUSE
I'VE GOTTEN COMMENTS BEFORE,
WELL, YOU'RE EXCLUDING EVERY KID
WITH CVI, RIGHT?
AND I THINK THAT'S HARD BECAUSE
I DON'T THINK WE NECESSARILY
WANT TO DO THAT.
I THINK WE HAVE TOO MUCH
OVERLAP.
I DON'T THINK WE HAVE CLEAR
ENOUGH CRITERIA TO REALLY BE
ABLE TO DO THAT, SO I THINK WE
NEED TO REALLY THINK HARD ABOUT
WHAT ARE THERE MAYBE SPECIFIC
IMPAIRMENTS PARTS OF CVI THAT WE
WOULD WANT TO EXCLUDE, BECAUSE
THEY WOULD IMPACT OUR DATA
COLLECTION, BUT I THINK
OTHERWISE WE PROBABLY NEED TO
LOOK MORE HOLISTICALLY AND JUST
WORK ON BETTER ASSESSMENTS TO
TOK EUMENTDOCUMENT THE VISUAL I.
>> I THINK IT WILL BE GREAT TO
HAVE A DOCUMENTED STUDY.
>> HOW DIVERSE IS YOUR HIGH
FUNCTIONING CVI GROUP, AND WHAT
KIND OF TESTS DO YOU DO TO
DIAGNOSE AND TO QUALIFY FOR YOUR
STUDIES?
>> SO THIS STUDY, THIS
PARTICULAR STUDY FOR HIGH
FUNCTION CVI WERE REFERRALS TO
OUR EYE DEPARTMENT, REFERRALS
FROM THE NEUROLOGIST, REFERRALS
FROM PEDIATRICIANS WHO HAD --
THEY CAME IN WITH MRI SCANS AND
ALL THE DETAILS AND THEY SAY
THEY SUSPECTED CVI.
SO WHEN WE DID THE PARENT
INTERVIEW, WE FOUND THAT, YES,
THEY HAD THE PERCEPTUAL DEFICIT,
AND THEY HAD INDEPENDENT
NEUROLOGICAL DIAGNOSIS, AND MRI
DIAGNOSIS, 31 HAD MRI SCANS.
ONE OF THEM WAS MISSING BECAUSE
THEY CAME FROM A DIFFERENT
CENTER AND ONE OF THEM HADN'T
HAD ONE.
ALL THE OTHER 31 HAD AN
IDENTIFIABLE LESION IN THE
BRAIN.
BUT WE SINCE HAVE ADDED 59
CHILDREN, OUT OF WHICH ANOTHER
20 IS NORMAL VISUAL ACUITY, AND
SOME OF THEM HAVE COMPLETELY
NORMAL MRI SCANS, BUT THEY HAVE
A WHOLE SPECTRUM OF VISUAL
PERCEPTUAL DEFICITS AND DEFINITE
DIAGNOSIS OF CVI.
BUT THAT STUDY, THE OLDEST
DIAGNOSIS IS MADE INDEPENDENTLY,
AND WE DID HAVE THE VISUAL
QUESTION -- THE TESTER DID NOT
KNOW WHAT THE DIAGNOSIS WAS, AND
THE PARENT DID NOT KNOW THAT
THIS WAS THE PURPOSE OF THIS.
>> I'M GOING TO ASSUME THAT BY
DIVERSITY, YOU'RE REFERRING TO
LIKE DIVERSITY OF THE CLINICAL
PROFILE?
OKAY.
>> I GUESS IT IMPACT THEIR DAILY
LIFE IN A VARIETY OF DIFFERENT
WAYS.
AS YOU CAN IMAGINE.
SO WE DON'T ACTUALLY DO THE
DIAGNOSES OURSELVES.
YOU KNOW, I'M A SCIENTIST, I
CAN'T DO THAT.
BUT THEY ARE SEEN BY A NUMBER OF
DIFFERENT CLINICIANS, MANY OF
THEM IN THE BOSTON AREA WHO USE
A VARIETY OF DIFFERENT
TECHNIQUES TO DIAGNOSE.
KEEPING IN CONTEXT HOW THE
VISION IMPACTS THEIR DAILY
FUNCTIONS.
BUT YEAH, I WOULD SAY HALF OR SO
HAVE PRETTY VISIBLE LESIONS.
THERE IS A RANGE OF DIFFERENT
CAUSES.
I THINK THE LEADING CAUSE SO FAR
HAS BEEN PVL, BUT NOT ALL OF
THEM.
SOME HAVE GENETIC DISORDERS,
SOME HAVE, YOU KNOW, BIRTH
EVENTS -- YEAH, A MIX.
AND LIKE MAYBE A THIRD HAVE
CEREBRAL PALSY.
SO IT'S PRETTY DIVERSE.
>> THIS IS A QUESTION FOR
DR. BOWMAN AND ALSO FOR THE TEAM
AT NEI AND THAT IS, IS YOUR
GROUP CONSIDERING A REGISTRY
LIKE WE ARE HERE, AND IF SO,
WHAT'S THE POTENTIAL FOR LINKING
IT WITH WHAT WE'RE DOING?
>> NO, WE'RE NOT CONSIDERING A
REGISTRY.
[LAUGHTER]
I MEAN, IN THE UK, WE HAVE AN
EXISTING REGISTRATION FOR VISUAL
IMPAIRMENT IN CHILDREN AND
ADULTS, AND ON THAT FORM, WE PUT
THE CAUSE, AND THE LEVEL OF
VISION, WHETHER IT'S SEVERE OR
PARTIALLY SIGHTED.
SO THAT ENABLES US TO JUST TRACK
DIFFERENT CAUSES.
BUT NO, WE'RE NOT SPECIFICALLY
LOOKING AT CVI REGISTRY.
>> THANK YOU.
WE'LL GO AHEAD AND MOVE NEXT TO
THE FOCUS GROUPS.
IF YOU LOOK ON THE BACK OF YOUR
NAME TAG, YOU SHOULD HAVE THE
NAME OF WHICH FOCUS GROUP YOU'VE
BEEN ASSIGNED TO AS WELL AS THE
LOCATION AND THEN DO WE HAVE A
SLIDE?
>> ARE WE COMING BACK HERE?
>> SO, YES, AFTERWARDS, SO THE
FOCUS GROUPS WILL BE FOR HALF AN
HOUR AND THEN WE'LL COME BACK
HERE AT 4:30 TO DISCUSS OUR
FINDINGS.
IN THE FOLDER, THERE ARE
DISCUSSION QUESTIONS FOR YOU TO
CONSIDER.
AND IF YOU WERE HERE YESTERDAY
AND YOU DID NOT GET A NEW NAME
TAG, YOU DON'T HAVE YOUR GROUP
ASSIGNMENT SO YOU NEED TO GET A
NEW NAME TAG.
LET'S TAKE OUR SEATS SO WE CAN
GET STARTED.
IF YOU ARE REPORTING OUT FOR
YOUR GROUP -- [INAUDIBLE]
>> LET'S JUST GO ONE BY ONE.
DO WE HAVE A REPRESENTATIVE FOR
THE ACCOMMODATIONS AND EDUCATION
GROUP HERE?
ALL RIGHT, CHRISTINE.
GO AHEAD.
>> OKAY.
WE SOLVED THIS PROBLEM
COMPLETELY, WE WANT YOU TO KNOW.
ACTUALLY -- CHRISTINE ROMAN.
DO YOU WANT TO START BY TALKING
ABOUT WHAT YOU --
>> SURE.
>> DO YOU WANT TO USE THE MIC?
THERE WE GO.
>> I'M KRISTIE, I MET SOME OF
YOU YESTERDAY, PROGRAM DIRECTOR
AT NINDS BUT I ALSO WAS A
RESEARCHER FOR A LONG TIME.
AND ONE OF THE METRICS THAT I
THOUGHT WOULD BE HELPFUL IN OUR
GROUP WHICH WAS ACCOMMODATIONS
IN EDUCATION THAT WAS A GOOD, I
THOUGHT, SIMPLE IB INDICATOR THT
WOULD SPEAK TO SOCIAL
DETERMINANTS OF HEALTH IS THE
CHILD OPPORTUNITY INDEX.
AND THIS IS AN ALTERNATE OR IN
ADDITION TO THE ADI, WHICH IS
THE AREA DEPRIVATION INDEX?
YES, OKAY, GREAT.
AND IT'S SPECIFIC TO CHILD --
THINGS THAT ARE RELEVANT TO
CHILDREN.
AND SO WHAT THIS IS IS A 29
INDICATORS OF SOCIAL
DETERMINANTS OF HEALTH WHICH
MAKES THE COMPOSITE AND ITS AT
THE LEVEL OF THE UNITED STATES
CENSUS TRACT.
AND SO IT REALLY IS A SINGLE
EASY INDICATOR THAT IF YOU ARE
SOMEONE WHO'S ENTERING THIS DATA
CAN BE DONE WITH SIMPLY THE
CHILD'S ADDRESS, WHICH YOU DO
NOT NEED TO INPUT INDIRECTLY,
YOU CAN PUT THE ADDRESS INTO A
SITE WHICH WILL TELL YOU WHAT
THE CHILD OPPORTUNITY INDEX IS
FOR THAT SPECIFIC ADDRESS AND
THAT'S WHAT CAN BE INPUT.
BUT WHAT IT WILL HELP US DO IS
IT A VERY EASY METRIC THAT HAS
BEEN VALIDATED IN MANY, MANY,
MANY DIFFERENT KINDS OF STUDIES
THAT TELLS US ABOUT THE
OPPORTUNITIES IN EDUCATION, IN
FOOD, HEALTH, PLAYGROUNDS,
LIBRARIES, WHAT ARE THE
AGGREGATED OPPORTUNITIES THAT
CHILDREN HAVE AT THEIR LEVEL,
WHICH CAN HELP US INFORM MANY
QUESTIONS, CERTAINLY SOMETHING
ABOUT WHAT MIGHT THAT CHILD'S
ACCESS BE TO EDUCATIONAL SUPPORT
AND ACCOMMODATIONS.
>> THANK YOU.
WE ALSO TALKED ABOUT CREATING A
LIST OF WHAT ACCOMMODATIONS
REALLY SORT OF A COMPARE AND
CONTRAST, WHAT A CHILD -- JUST A
WHOLE LIST OF THINGS A CHILD
COULD POTENTIALLY RECEIVE IN
SCHOOL, AND WHAT THEY ARE
RECEIVING AND WHAT THE PARENTS
PERCEIVE THE NEEDS ARE.
SO WHAT IS THE CHILD GETTING,
WHAT DOES THE PARENT FEEL THE
CHILD NEEDS.
LOOKING AT THOSE TWO THINGS
TOGETHER COULD BE REALLY VERY
INTERESTING TO SEE, BECAUSE IT
COULD JUST BE A LIST AND THE
LIST COULD BE DUPLICATED AND
RESPONDED TO DIFFERENTLY.
WE TALKED ABOUT A WAY FOR A
PARENT TO ONCE THEIR CHILD IS
IDENTIFIED AS HAVING CVI, BEING
ABLE TO CLICK ON SOMETHING THAT
DIRECTS THEM TO THE RESOURCES IN
THEIR COMMUNITY, TO BE ABLE TO
FIND OUT MORE ABOUT PARENT
GROUPS AND EDUCATION.
WE TALKED ABOUT UNIVERSITY
PROGRAMS BUT THEN THAT KIND OF
DOVETAILED INTO NOT JUST
UNIVERSITY PROGRAMS FOR
EDUCATORS BUT REALLY ALL
PRE-SERVICE TRAINING IN ALL
THINGS, FROM MEDICINE TO THERAPY
SERVICES, PT/OT/SPEECH, VISION,
EVERYBODY NEEDS MORE PRE-SERVICE
TRAINING THAT WOULD ACTUALLY
HOPEFULLY TRICKLE DOWN TO
EDUCATION AND ACCOMMODATIONS.
WE TALKED BRIEFLY ABOUT TESTING,
THAT IT'S IMPORTANT TO THINK
ABOUT FAIR CONSIDERATIONS FOR
TESTING, SO THAT A CHILD DOESN'T
GET PIGEONHOLED AND STAY IN THAT
SPOT THEIR WHOLE EDUCATIONAL
LIFE.
COORDINATED CARE, THAT WAS AN
ISSUE THAT WE TALKED ABOUT
SOMEBODY HAS TO BE A TEAM
LEADER.
IT MAY OR MAY NOT BE A TEACHER
OF THE VISUALLY IMPAIRED, MAY OR
MAY NOT BE AN O & M PERSON,
SOMEBODY HAS TO COORDINATE THIS,
BECAUSE IF WE STAY IN OUR SILOS,
THAT'S PRETTY DEADLY.
THEN ON THE WAY OUT THE DOOR, WE
SAID WHAT ABOUT AUTISM?
SO IN 30 MINUTES, WE COULDN'T
SOLVE THAT PROBLEM, BUT WHAT DID
I MISS?
ANYTHING?
>> [INAUDIBLE]
>> WHO'S GETTING COORDINATED
CARE, WHO'S NOT, AND THEN TO
ADDRESS THAT AS WELL, YES.
AND WHO HAS LIKE A CASE MANAGER
THAT TAKES CARE OF -- BRINGS
EVERYBODY TO THE TABLE, WHETHER
IT'S AT SCHOOL, MEDICAL, ACROSS
ALL THOSE SERVICES.
IF I MISSED ANYTHING, PLEASE
FEEL FREE.
>> PERFECT TIMING.
LET'S MOVE ON TO
TEENAGERS/ADULTS WITH CVI.
>> HELLO.
SHARON LEHMAN.
WE HAD A LIVELY DISCUSSION ABOUT
THIS TOPIC.
THE FIRST REPORT OUT IS THAT WE
FEEL THAT OUTCOMES ARE DIFFERENT
FOR TEENS AND ADULTS THAN
CHILDREN, AND WE WOULD WANT TO
CAPTURE THINGS LIKE SECONDARY
EDUCATION, EMPLOYMENT, THE
ABILITY TO HAVE INDEPENDENT
TRAVEL, THE ABILITY TO DRIVE,
WHAT THEIR HOUSING IS, BECAUSE
THAT WILL REALLY SHOW THEIR
INDEPENDENCE, AND THEN SOMEHOW
MEASURE SOCIAL RELATIONSHIPS.
AND THAT WOULD BE FOR THE
REGISTRY.
AND WHAT WAS ALSO FELT TO BE
VERY IMPORTANT WAS SOMEHOW
BREAKING OUT AGE OF INJURY, AGE
OF ONSET OF SYMPTOMS AND AGE OF
DIAGNOSIS.
AND SOMEHOW CAPTURING THOSE
THREE THINGS.
AN INJURY MEANING, YOU KNOW, NOT
EVERYBODY WILL HAVE AN INJURY.
WE'RE TRYING TO, YOU KNOW, CAST
A WIDE NET HERE.
INJURY OR INSULT OR KNOWN
DISEASE PROCESS.
AND THEN IT WAS THOUGHT VERY
IMPORTANT THAT CVI SUSPECT BE
BROUGHT UP, AND WE TALKED ABOUT
THAT A LOT YESTERDAY.
TO INCLUDE THAT, AND THAT WOULD
BE REALLY HELPFUL.
AND THEN THE LAST THING IN OUR
GROUP, THERE WAS A STRONG
FEELING THAT WE SHOULD INCLU
INCLUDE -- WHO HAVE DISEASE THAT
COMES ON IN THEIR ADULT YEARS,
NOT JUST FOLLOWING CHILDREN WHO
GROW UP, BUT ALSO LOOKING AT
ADULT ONSET CVI.
ANY OTHER -- ANYBODY?
>> GREAT.
I AM THE REPRESENTATIVE FOR OUR
GROUP ON CVI WITH MULTIPLE
DISABILITIES.
SORRY YOU HAVE TO HEAR ME AGAIN.
WE TALKED ABOUT WHAT WAS
IMPORTANT TO THIS GROUP INCLUDES
DISENTATANGLING SYMPTOMS RELATED
TO VISUAL OR OTHER DISABILITIES,
TRYING TO FIND TESTS THAT CAN BE
APPLIED ACROSS THE DEVELOPMENTAL
AGE SPECTRUM AS WELL AS
ABILITIES AND THERE WAS A LOT OF
TALK ABOUT HOW DR. PRESKE'S WORK
WAS VERY PROMISING AND WHAT
INTERVENTIONS MAY BE
APPROPRIATE.
AND PEOPLE -- AS WELL AS WHAT
OUTCOMES ARE APPROPRIATE TO
MEASURE.
ALSO ONE THING THAT'S VERY
IMPORTANT I THINK FOR THIS GROUP
IS HOW THEY COMMUNICATE, ACCESS
TO COMMUNICATION AND AC DEVICES,
CAN THEY USE VISION TO
COMMUNICATE, CAN THEY USE EYE
TRACKERS, WHAT CHANGES TO EYE
TRACKERS NEED TO BE MADE SO THEY
CAN USE THEM, AN ALSO WE WANTED
TO ACKNOWLEDGE NAI'S POINT
EARLIER IN THE DAY THAT WE
SHOULDN'T TALK ABOUT CVI JUST AS
A DEFICIT, BUT THEY MAY HAVE
OTHER SENSES THAT ARE ACTUALLY
SUPER NORMAL IN A WAY THAT HELP
THEM TO ENGAGE AND MAXIMIZE
THEIR FUNCTION AND WE SHOULD TRY
TO CAPTURE THAT IN THE REGISTRY
AS WELL.
AND WE TALKED ABOUT SOME OF THAT
DIAGNOSTIC ASSESSMENTS MAY NOT
BE ABLE TO BE PERFORMED BY
CHILDREN WHO HAVE MULTIPLE
DISABILITIES, SO WE SHOULDN'T
REQUIRE LIKE ONE SINGLE
ASSESSMENT FOR DIAGNOSIS OR TO
BE INCLUDED IN THE REGISTRY.
WE REALLY NEED TO MAKE IT
FLEXIBLE IN TERMS OF INCLUSION
CRITERIA.
AND THEN WE TALKED A LOT ABOUT
AWARENESS THAT REALLY AWARENESS
NEEDS TO INCREASE IN ALL GROUPS,
PCPs, NEONATOLOGIST,
DEVELOPMENTAL PEDIATRICIAN,
EARLY INTERVENTION, PMR, NEWER
OL JIS AND OPHTHALMOLOGISTS.
WE SPECIFICALLY POINTED OUT
RETINA SPECIALISTS BECAUSE WE
TALKED ABOUT HOW SOME PATIENTS
WHO GRADUATE FROM ROP ARE TOLD
THEIR VISION IS NOW FINE BECAUSE
THEIR ROP HAS RESOLVED THAT, IN
FACT, THEIR VISION IS NOT FINE
BECAUSE THEY HAVE CVI.
AND THEN LASTLY, WE TALKED ABOUT
HOW SOME OF THESE FAMILIES --
THEY FEEL VISION IS THE LEAST OF
THEIR PROBLEMS, THE FAMILIES
THEMSELVES NEED TO BE EDUCATED
BECAUSE IF THEY CAN USE THEIR
VISION IN A WAY TO ACCESS THEIR
EDUCATIONAL MATERIAL, IT CAN
REALLY BE LIFE CHANGING FOR
THEM.
ANYONE ELSE FROM MY GROUP HAVE
ANYTHING TO ADD?
NO?
OKAY.
LET'S MOVE ON TO GLOBAL
PERSPECTIVE ON CVI.
>> HI.
I'M LINDA LAWRENCE.
WE HAD A GREAT DISCUSSION.
FIRST OF ALL, THE WHOLE WORLD
OUT THERE IS LOOKING AT WHAT
WE'RE DOING HERE, BECAUSE EVERY
COUNTRY I WORK IN WANT TO DO A
REGISTRY TOO.
THE BIG THING, YOU KNOW, IN THE
LOW RESOURCE COUNTRIES, THEY
DON'T HAVE AS MANY RESOURCES TO
TAKE CARE OF THE KIDS ONCE
THEY'RE DIAGNOSED WITH CVI, SO
THEY'RE INTERESTED IN
ETIOLOGIES, SO THERE CAN BE MORE
PRIMARY PREVENTION.
TRYING TO FIGURE OUT, FOR
EXAMPLE, IN INDIA, THEY HAVE A
LOT MORE NEONATAL HYPOGLYCEMIA
THAT LEAD TO CVI AND THAT'S
SOMETHING THAT IF WE KNEW HOW
DOES THAT HAPPEN, WE COULD
POSSIBLY PREVENT THAT AND SAVE
KIDS FROM GETTING CVI.
WE ALSO FELT THAT THERE SHOULD
BE TARGETED SCREENING LIKE IN
SPECIAL SCHOOLS WHICH IS ALREADY
BEING DONE IN A LOT OF
COUNTRIES.
AND WE NEED TO HAVE THE TOOLS
THAT ARE LOW COST, EASY TO
TRANSPORT, AND NOT ONLY JUST FOR
THE DEVELOPING WORLD, BUT WE
EVEN TALKED ABOUT FOR SOME OF
OUR PEDIATRIC OPHTHALMOLOGISTS
HERE WHO DON'T HAVE TELLER CARDS
OR IF WE PUT TELLER CARDS AS THE
SCREEN FOR VISUAL ACUITY, THAT'S
GOING TO TAKE A LOT OF KID OUT
OF THE MIX.
SO THERE ARE SOME LOW COST --
GRADING PADDLES AND THINGS LIKE
THAT THAT ARE PRETTY AVAILABLE.
ALSO TO TRY AND FIGURE OUT A LOW
COST -- ANOTHER LOW COST WAY,
JUST A QUESTION HERE AND THAT
MIGHT BE A WAY THAT ESPECIALLY
IN A DEVELOPING WORLD WHERE
RESOURCES ARE LOW THAT THEY CAN
FIND KIDS THAT HAVE FALLEN
THROUGH THE CRACKS LIKE WE HEARD
ABOUT TODAY.
THEY WOULD HAVE A TOOL THAT'S
INEXPENSIVE, PEOPLE CAN BE
TRAINED, THERE'S A LOT OF SMART
PEOPLE WHO ARE VERY DEDICATED
OUT THERE.
I JUST WANT TO RE-EMPHASIZE
THEY'RE WAITING FOR US.
>> THANK YOU.
ANYBODY ELSE?
FROM MY TEAM?
>> THANKS, LINDA.
NEXT WE HAVE THE CAREGIVER
PERSPECTIVE.
>> HI, EVERYONE.
KERRY, REPORTING OUT FOR A GROUP
LED BARRE CHEL BENNETT, A BUNCH
OF OTHER FOLKS AROUND THE TABLE
PROVIDED SOME REALLY GREAT INPUT
FROM THE CAREGIVER PERSPECTIVE,
WHICH I THINK WE SHOULD DEFINE A
LITTLE BIT BETTER.
SO ONE OF OUR PROVIDERS ACTUALLY
FEELS HE IS A CAREGIVER TOO, AND
I THINK THAT IS GREAT.
THAT'S WHAT WE NEED, EVERYONE IS
ON A TEAM.
SO CAREGIVER CAN BE A LOT OF
THINGS TO A LOT OF PEOPLE.
BUT I THINK FOR OUR PURPOSES WE
WERE TRYING TO LOOK AT THIS FROM
THE CAREGIVER IN TERMS OF THE
PARENTS AND OTHER PEOPLE IN THE
CLOSE PROXIMITY OF SOMEONE'S
24/7 DAILY LIVING.
SO WE COVERED SOME TOPICS IN
QUESTIONS 1, 3 AND 5, SO
FOCUSING ON WHAT THE REGISTRY IS
GOING TO ADDRESS.
WE HAD SOME OF THE SAME CONCEPTS
AS BEFORE, LIKE WHEN WERE THE
INITIAL ONSET OF SYMPTOMS, WHEN
DID THE PROVIDER -- OR THE CARE
PROVIDER FIRST RECOGNIZE THAT
SOMETHING WAS DIFFERENT ABOUT
THEIR CHILD AND WHAT WAS IT,
WHAT TOOLS WERE USED FOR THAT
DIAGNOSIS, WHAT KIND OF
PROVIDERS AND HOW MANY DL THEY
DID THEYSEE BEFORE THEY RECEIVEI
DIAGNOSIS, WERE THERE OTHER
THINGS PRESENTED, WHO FIRST
SUGGESTED THAT SIEVE CO CVI COUA
POTENTIAL DIAGNOSIS.
WHAT TOOLS DID THEY USE?
THERE WAS A LOT OF REALLY GREAT
DISCUSSION ABOUT REAL WORLD
FUNCTIONING, AND WE TALKED ABOUT
THE NEED TO ENGAGE WITH THOSE
COMMUNITIES AND I MENTIONED THAT
FOR ANOTHER PROJECT, WE ARE
WORKING DIRECTLY WITH PEOPLE
WITH LIVED EXPERIENCE TO DEVELOP
THOSE TOOLS.
ERIKA HAS BEEN MEETING WITH THEM
OFTEN AND I THINK THAT IS A GOOD
WAY.
WE ALSO TALKED ABOUT EVEN THOUGH
WE WANT TO TRY TO GET STRUCTURED
DATA LEAVING AN OPPORTUNITY FOR
A FREE TEXT FIELD FOR PEOPLE TO
PROVIDE NARRATIVES AND OBVIOUSLY
WE'RE NOT GOING TO CAPTURE
EVERYTHING TA EVERYONE
EXPERIENCES, SO MAKING SURE WE
DO ALLOW FOR THAT OPTION AS
WELL.
LET'S SEE.
OH, ONE REALLY SALIENT POINT WAS
ABOUT COMPENSATORY SKILLS, AND
SOME OF THE FOLKS WITH CVI HAVE
LEARNED REALLY AMAZING SKILLS,
LIKE I HEARD THE STORY ABOUT A
TODDLER WHO TAUGHT HIMSELF TO
SEE WITH WORDS THROUGH ART AS A
TODDLER, AND PASSES AS FULLY
SIGHTED, SO THAT'S REALLY
AMAZING, AND JUST WHAT SKILLS
THESE KIDS HAVE VELLED ON THEIRN
THEIR OWN CAPTURING THAT IN A
DATA-DRIVEN WAY.
WHAT KINDS OF THINGS ARE
FATIGUING AND HOW DO FOLKS
COMPENSATE FOR THAT, ALSO A BIG
AREA OF INTEREST FOR THIS
COMMUNITY.
SO THAT WAS SOME OF THE THINGS I
THINK WE COVERED A LOT OF GROUND
IN THE WHAT DATA TO CAPTURE, AND
WE JUST SCRATCHED THE SURFACE.
BUT THERE WAS A REALLY GREAT
CONVERSATION TOO ABOUT WHO
INITIATES THE PROCESS OF
CONNECTING WITH A REGISTRY, SO
WE WERE DISCUSSING THAT THIS
SHOULD REALLY BE OPEN-ENDED AND
THERE SHOULD BE MANY AVENUES TO
CONNECTING WITH THE REGISTRY.
SO THIS COULD BE THAT A PARENT
OR A PERSON WITH CVI FIRST
CONNECTS WITH A REGISTRY
THEMSELVES AND I THINK WE HAD
TALKED ABOUT THIS THROUGHOUT THE
MEETING THAT WE WANT DATA
COLLECTED FROM DIFFERENT ASPECTS
OF THE DIAGNOSIS, AND SO WE WANT
INFORMATION FROM PROVIDERS,
CAREGIVERS, DVIs ON ALL OF
THAT, BUT WE SHOULD BE OPEN TO
WHO INITIATES THAT CONVERSATION
WITH OUR COORDINATING CENTER,
BECAUSE THERE'S A COUPLE THINGS
AT PLAY.
SO IT COULD BE THAT A FAMILY IS
VERY DRIVEN TO BE PART OF THIS
RESEARCH, IT MIGHT LEAD THE
CLINICIAN TO ENTER INFORMATION.
WE FOUND WITH IG ACTUALLY IT
TOOK SOMETIMES THE PERSON, THE
FAMILY, TO PUSH THEIR DOCTOR TO
ENTER DATA ONLINE BECAUSE LET'S
BE REAL, THEY ARE KINDA BUSY, SO
HAVING THAT AS ONE AVENUE CAN BE
REALLY POWERFUL.
BUT THERE COULD ALSO BE
PROVIDERS, CLINICAL PROVIDERS
WHO REALIZE THAT THE PARTICIPANT
IS GOING TO HAVE -- AND SORRY
I'M AT THE NIH AND WE ALWAYS
REFER TO PEOPLE AT PARTICIPANTS
INSTEAD OF PATIENTS SO IF YOU
HEAR THAT, THAT'S KIND OF --
I'VE BEEN TRAINED TO SAY THAT.
SO THAT'S WHAT I MEAN, IS THE
PATIENT, SO THE PROVIDER'S
PATIENT MIGHT BE IDENTIFIED AS
SOMEONE WHO HAS NO INTERNET OR
NO EMAIL AND SO IT MIGHT BE
BETTER IN THOSE INSTANCES THAT
THAT PROVIDER INITIATES THE
ENTRY INTO THE REGISTRATION.
IT COULD EVEN BE THAT TBIs ARE
INITIATING THAT, THEY IDENTIFY
SOMETHING AND THEY WANT TO
CONNECT THE FAMILIES AND THE
PROVIDERS TO ENTERING, SO JUST
KEEPING IN MIND THAT WE WANT TO
BE REALLY OPEN-ENDED ON
DIFFERENT AVENUES TO CONNECT.
AND THEN THERE WAS A GOOD BIT OF
DISCUSSION ABOUT PROMOTING
AWARENESS, AND JUST ON A
PERSONAL LEVEL, I FEEL LIKE
THAT'S WHAT I HOPE THE REGISTRY
ENABLES MORE, BUT PROMOTING HOW
CVI -- ALL THE STUFF, HOW CVI IS
DIAGNOSED, PROMOTING EARLY
INTERVENTION, TEACHING PARENTS
HOW BABIES USE THEIR VISION
BECAUSE A LOT OF THE PARENTS,
THIS COULD BE THEIR FIRST KID,
THEY DON'T REALLY UNDERSTAND
THAT THEY'RE SEEING RAPID EYE
MOVEMENTS AND THAT MIGHT BE AN
INDICATION TO LOOK FOR AN
OPHTHALMOLOGY VISIT.
SO TEACHING NEW FAMILIES ABOUT
THAT.
THEN PROMOTING THIS THROUGH
APOS, AO, FOR US IT'S RVO, THE
VISION RESEARCH ORGANIZATION, SO
JUST KEEP PROMOTING WHAT WE'RE
DOING WITH THOSE COMMUNITIES.
AND THEN IF I LEFT ANYTHING OUT,
PLEASE.
>> THANK YOU.
LAST ONE.
>> GOOD AFTERNOON.
I'M SHEFFA GORDON FROM THE
NATIONAL EYE INSTITUTE.
MIGHT BE THE LAST SPEAKER OF THE
DAY.
IT'S BEEN A LONG DAY.
THANK YOU, EVERYONE, FOR BEARING
WITH US.
I AM PARTLY RESPONSIBLE FOR THE
VERY AMBITIOUS AGENDA.
WE'VE HAD SOME GREAT SPEAKERS,
GREAT TALKS.
I KNOW WE BLEW THROUGH A BUNCH
OF BREAKS, SO THANKS, EVERYONE,
HERE, FOR BEARING WITH US AND
FOR THOSE OF THE 400 PEOPLE WHO
REGISTERED FOR THE WEBCAST,
THANK YOU FOR JOINING US, AND IT
IS RECORDED SO YOU CAN CATCH UP
WHAT YOU MAY HAVE MISSED
AFTER -- IT SHOULD BE OUT IN
ABOUT A WEEK IF YOU CHECK THE
NIH WEBSITE.
OUR FOCUS GROUP WAS FOCUS ON
BUILDING AWARENESS AND ADVOCACY.
KRISTIE HAD TO RUN TO CATCH AN
AIRPLANE SO I'M REPORTING OUT.
WE START OUT BY TALKING ABOUT
THE ELEPHANT IN THE ROOM,
LITERALLY THE ELEPHANT WE SAW IN
THE VERY FIRST SLIDE TODAY THAT
SKIP SHOWED US THAT SHOWED ALL
THE DIFFERENT PROVIDERS WITH
SEEING DIFFERENT FACETS OF AN
ELEPHANT, THE TAIL AND THE
TRUNK, YOU GET DIFFERENT
PERSPECTIVES ON CVI.
ALL THOSE PROVIDERS, THE OT, THE
TEACHERS, THE DIFFERENT EYE CARE
PROVIDERS, PEDIATRICIANS, WE
NEED TO BUILD AWARENESS IN THOSE
GROUPS, WE THOUGHT ABOUT MAYBE
HAVING INCREASING CONTINUING
EDUCATION OPTIONS AND REACHING
PEOPLE AT THEIR PROFESSIONAL
SOCIETIES AND CONFERENCES, AND
ULTIMATELY FOLDING CVI INTO THE
CURRICULA FOR TV I, TEACHERS OF
THE VISUALLY IMPAIRED, INTO TO
PEDIATRICIANS, TO OPTOMETRY AND
OPHTHALMOLOGY.
WE'VE HEARD FROM MANY PEOPLE
THAT IT'S NOT ACTUALLY PART OF
THE TRAINING THAT YOU RECEIVE
PROFESSIONALLY.
SO TO ADVOCATE FOR SOCIETIES TO
MAKE THAT A PRIORITY.
AND THEN WHO ELSE NEEDS TO RAISE
AWARENESS ARE THE FAMILIES AND
PATIENTS.
THIS WOULD COME FROM SCREENING.
IDEALLY WOULD YOU SCREEN -- WE
DON'T HAVE -- WE IDENTIFIED THAT
IT'S EASY TO SAY THAT, BUT WE
DON'T HAVE A VALIDATED SCREEN
FOR THE APPROPRIATE AGE.
WE HEARD ABOUT THE AUSTIN
ASSESSMENT, I THINK THAT STARTED
AT AGE 8, AND EVEN WAITING UNTIL
PRE-SCHOOL A LITTLE TOO LATE FOR
MANY TO PROVIDE THESE KIDS
ACCESS.
SO THERE IS A NEED FOR SCREENING
TOOLS.
WE DON'T WANT TO LET THE PERFECT
GET IN THE WAY OF SUCCESS, SO
THERE'S -- PEOPLE BROUGHT UP
SCREENING, NICU AND INDIVIDUALS
DIAGNOSED WITH CEREBRAL PALSY
FOR COMPLETE VISUAL ASSESSMENTS,
THESE THINGS HAVE BEEN BROUGHT
UP TODAY, BUT TO KEEP THAT AS A
GOAL TO REALLY REACH REACH AS MY
PEOPLE AS POSSIBLE.
ANOTHER WAY TO EDUCATE THE -- TO
BRING AWARENESS AND EDUCATE
INDIVIDUALS IN THE -- THE
PROFESSIONALS IN THE COMMUNITY
IS THROUGH PUBLIC AWARENESS.
I DO REPRESENT NIH BUT SOMEONE
ELSE IN OUR GROUP SAID NEI HAS
GREAT RESOURCES THAT WE PROVIDE
FOR LOW VISION, LOW VISION
RESOURCES, AND WE HAVE HEALTHY
VISION MONTH TO RAISE AWARENESS
AND THEY SUGGESTED HAVING A
HEALTHY VISION MONTH FOCUSING ON
CVI OR A CVI WEEK OR SOMETHING
TO PROVIDE RESOURCES TO BUILD
PUBLIC EDUCATION CAMPAIGNS OR
PSAs, BECAUSE THIS -- WE HEARD
A LOT TODAY ABOUT FAMILIES NOT
BEING BELIEVED, AND IT HARD
TO -- YOU KNOW, IF YOU GET THE
MESSAGE OUT THERE, THAT WILL
HELP PROVIDERS START TO BELIEVE
FAMILIES.
SO THAT WAS SOMETHING THAT CAME
ACROSS IN OUR FOCUS GROUP.
WE DID TALK ABOUT HOW TO USE THE
REGISTRY, BUT THE LAST THING I
JUST WANT TO MENTION IS THAT WE
WOULD LIKE -- ONCE WE PUT UP A
REGISTRY, WE LIKE FAMILIES TO
PARTICIPATE AND HOW TO ADVERTISE
TO DIFFERENT PROVIDERS TO THE
PROFESSIONAL SOCIETIES AND HOW
TO GET FAMILIES, WE TRIED TO
THINK OF WOULD THERE BE BARRIERS
FOR FAMILIES TO CONSENT TO
PARTICIPATE, PARTICULARLY TO
MAKE SURE WE GET DIVERSE SETS
OF -- DIVERSE PARTICIPANTS IN
THE REGISTRY.
SO WE DIDN'T IDENTIFY -- WE
RECOGNIZE THAT THERE ARE
STANDARD -- THINKING OF -- THERE
ARE BARRIERS FOR CERTAIN
POPULATIONS, BUT WE DIDN'T
IDENTIFY ANY SOLUTIONS TO THAT
POINT.
WHILE I HAVE THE MIC, I WANT TO
LET YOU KNOW IN THE ROOM THAT WE
TALKED ABOUT CVI IN THE NEI
STRATEGIC PLAN, AND I HAVE
BROUGHT SOME COPIES, THEY'RE ON
THE TABLE BACK HERE, FOR THOSE
OF YOU AT HOME, YOU CAN JUST
GOOGLE NATIONAL EYE INSTITUTE
STRATEGIC PLAN.
YOU'LL FIND A LINK TO AN ONLINE
VERSION OF THIS.
FOR THOSE OF YOU THAT WANT, YOU
CAN TAKE HOME THE FULL 157-PAGE
VERSION.
IF YOU'RE OVER THE WEIGHT LIMIT,
THERE'S ALSO AN EXECUTIVE
SUMMARY.
[LAUGHTER]
>> SORRY, SHEFA, WAS THERE
ANYTHING ELSE YOU WANTED TO SAY?
>> THIS IS CHERI.
>> THIS IS CHERI, AND I DIDN'T
HAVE THE CHANCE TO TELL YOU THAT
I'M WEARING A GREEN JACKET.
SOME CALL ME PETITE, AND THE
ARGUMENT IS ABOUT MY HAIR.
FOLKS WHO CUT MY HAIR SAY THAT
IT'S ASH BLOND.
MY KIDS VACILLATE BETWEEN GREY,
SILVER, AND WHITE.
SO I THINK YOU'RE ALL ASH BLOND
FOLKS.
I JUST WANT TO THANK YOU FOR AN
EXHAUSTING BUT TREMENDOUS DAY.
WE ARE SORRY THAT THERE WAS SO
MUCH TO DISCUSS AND YOU ALL WERE
SO IMPASSIONED AND INVOLVED THAT
WE MAYBE SHOULD HAVE HAD MORE
BREAKS, BUT THERE WAS JUST TOO
MUCH TO SAY, AND I THINK WE'RE
STILL FEELING LIKE WE WANT TO
HEAR MORE.
I HOPE YOU ALL HAVE SAFE TRAVELS
HOME.
I HOPE YOU MET SOMEONE NEW HERE
THAT YOU WILL STAY IN TOUCH WI
WITH.
THIS WAS JUST A WEALTH OF
INFORMATION, BUT ALSO JUST
REALLY HEARTENING TO SEE HOW
IMPASSIONED YOU ALL ARE.
AND ACTUALLY MELINDA, I'D LOVE
FOR YOU TO BE ABLE TO CLICK THE
GAVEL OR WHATEVER TO END THE
MEETING.
>> ALL RIGHT, I HAVE ONE MINUTE,
WE'RE ACTUALLY ENDING ON TIME.
THANK YOU SO MUCH FOR BEARING
WITH US.
I KNOW IT'S A LITTLE GRUELING,
THIS IS THE END OF THE WORKSHOP
BUT JUST THE BEGINNING OF ALL
OUR WORK.
WE'RE GOING TO NEED A LOT OF
INPUT FROM ALL OF YOU, AND ALSO
JUST DEVELOPING OUR DIAGNOSTIC
CRITERIA AND DEFINITION.
SO THANK YOU AGAIN FOR COMING
OUT HERE.
WE REALLY APPRECIATE IT.
[APPLAUSE]