WELCOME TO DAY TWO OF THE NIH
WORKSHOP ON CEREBRAL PALSY
RESEARCH. WE WILL WAIT A FEW
MINUTES AS PEOPLE JOIN ON TO US
THROUGH THE VIDEOCAST SITE.
PLEASE BE PATIENT, WE'LL START
IN A FEW MINUTES. GLAD YOU ARE
BACK FOR DAY TWO. AGAIN THIS IS
DAY TWO OF THE NIH WORKSHOP ON
CEREBRAL PALSY RESEARCH. WE WILL
START IN A FEW MORE MINUTES AS
MORE PEOPLE JOIN US FROM THE NIH
VIDEOCAST SITE. WE HAVE A GREAT
MORNING PRESENTATIONS AHEAD OF
US. AND WE WILL BE STARTING
SHORTLY. LET'S GET STARTED.
GOOD MORNING. I AM RALPH NITKIN,
THE DEPUTY DIRECTOR OF THE
NATIONAL CENTER FOR MEDICAL
REHABILITATION RESEARCH LOCATED
WITHIN THE EUNICE KENNEDY
SHRIVER NATIONAL INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT. ALONG WITH MY
COLLEAGUES FROM THE NATIONAL
INSTITUTE OF NEUROLOGICAL
DISORDERS AND STROKE I WOULD
LIKE TO WELCOME YOU BACK TO DAY
TWO OF OUR WORKSHOP ON CEREBRAL
PALSY RESEARCH. TO REITERATE THE
PURPOSE OF THE TWO DAY WORKSHOP,
PROVIDE UPDATE ON CURRENT
RESEARCH IN CEREBRAL PALSY AND
ESPECIALLY HOW IT RELATES TO THE
NIH TENURE STRATEGIC PLAN ON
CEREBRAL PALSY RESEARCH
PUBLISHED IN 2017 YESTERDAY DAY
ONE WE HEARD BACKGROUND ON
INCREASING SCOPE OF CEREBRAL
PALSY RESEARCH AROUND THE NIH
AND IN THE CONTEXT OF THIS
RESEARCH PLAN. THEN WE START
WITH THE VOICE OF THE
PARTICIPANT, TWO ENTHUSIASTIC
TALKS FROM THE AS VOW CHASSI AND
PERSONAL SIDE AND THEN SIX
OUTSTANDING PRESENTATIONS THAT
HIGHLIGHTED RESEARCH ADVANCES IN
STRATEGIC AREA ONE BASIC
TRANSLATIONAL RESEARCH FOLLOWED
BY A LIVELY DISCUSSION OF YOUR
AUDIENCE QUESTIONS THEN BRIEF
WRAP UP OF DAY ONE. THE WHOLE
SESSION AND TODAY'S SESSION AS
WELL WILL BE ARCHIVED ON THE NIH
VIDEOCAST SITE AVAILABLE IN A
FEW DAYS. THIS MORNING SESSION
WILL FOCUS ON STRATEGIC PRIORITY
AREA TWO, CLINICAL RESEARCH
ADVANCES. PRIORITIES IN THIS
AREA INCLUDE CONSIDER THE WHOLE
LIFE SPAN. ENHANCE THE TREATMENT
OPTIONS, REVISIT AND UPDATE
STUDY DESIGNS IN THE FIELD. AND
DEVELOP BETTER DATA METRICS.
THIS WILL BE FOLLOWED BY AN
AFTERNOON FINAL SESSION ON
STRATEGIC PRIORITY AREA THREE
WORK FORCE AND RESOURCE
DEVELOPMENT. SO THE SCHEDULE FOR
THIS MORNING SESSION ON CLINICAL
RESEARCH IS AS FOLLOWS: STACEY
DUSING FROM THE UNIVERSITY OF
SOUTHERN CALIFORNIA WILL START
OUT WITH A PRESENTATION ON
PHYSICAL THERAPY INTERVENTIONS
FOR YOUNG CHILDREN. KATHERINE
HOUSTON FROM THE UNIVERSITY OF
WISCONSIN WILL DISCUSS THE ISSUE
OF COMMUNICATION DEVELOPMENT IN
CHILDREN WITH CEREBRAL PALSY.
DIANE DAMIANO FROM OUR OWN NIH
CLINICAL CENTER WILL DISCUSS
TECHNOLOGIES FOR ASSESSMENT AND
FUNCTIONAL RESTORATION.
MARKETEER PERSON UNIVERSITY OF
MICHIGAN WILL DISCUSS
UNDERSTANDING THE HEALTHCARE
NEEDS FOR ADULTS WITH CEREBRAL
PALSY. AND ZACH VESOULIS FROM
THE WASHINGTON UNIVERSITY ST.
LOUIS WILL FINISH THE SESSION
WITH A DISCUSSION ON RACIAL
DISPARITIES IN CEREBRAL PALSY.
I'M SURE EACH OF THESE TWO
MINUTE PRESENTATIONS WILL
STIMULATE MUCH DISCUSSION AND WE
DISCOURAGE YOU TO TYPE YOUR
QUESTIONS UNDER THE QUESTION AND
ANSWER TAB AT THE BOTTOM OF THE
SCREEN OR IF YOU ARE WATCHING ON
THE NIH VIDEOCAST SITE PLEASE
TYPE QUESTIONS INTO THE LIVE
FEEDBACK BUTTON. FOLLOWING THESE
FIVE PRESENTATIONS THE SPEAKERS
WILL ADDRESS YOUR QUESTIONS
DURING THE DISCUSSION PERIOD
THAT FOLLOWS ALL FIVE TALKS. SEW
WITH THAT LET'S GETS STARTED.
>> GOOD MORNING. THANK YOU FOR
HAVING ME HERE TODAY. I'M STACEY
DUSING, FAMILY CHAIR PEDIATRIC
PHYSICAL THERAPY HEALTH AND
DEVELOPMENT, UNIVERSITY OF
SOUTHERN CALIFORNIA. I'M EXCITED
TO BE HERE TO TALK THERAPY
INTERVENTIONS FOR INFANTS AND
YOUNG CHILDREN WITH CEREBRAL
PALSY. I'M GOING FOCUS ON THREE
AREAS TODAY, AS I HIGHLIGHT THE
PROGRESS WE HAVE MADE IN THIS
FIELD. FIRST IS THINK ABOUT
EFFECTIVENESS OF INTERVENTION
AND WHAT IS A NEW ERA OF EARLY
DETECTION IN CEREBRAL PALSY. WE
WILL TALK POLICY RELATED ISSUES
AND HOW THIS IMPACTS THE
UTILIZATION OF OUR EVIDENCE, AS
WELL AS THE INTERVENTION HEARSAY
PRIOR TO DIAGNOSIS, BUT YOU MAY
WANT TO CONSIDER IF WE ARE
TRYING TO LOOK FOR BEST PRACTICE
FOR SUPPORTING POPULATIONS OF
CHILDREN. OR HIGH RISK FOR
CEREBRAL PALSY. SO I ALWAYS WANT
TO TAKE INTO CONSIDERATION WHEN
MAKING MY DECISIONS FROM A
RESEARCH PERSPECTIVE AS WELL AS
CLINICAL PERSPECTIVE PUT THE
NEEDS OF PARENTS AND FAMILIES
ARE. FOR 25 YEARS I WORK WITH
INFANTS HIGH RISK OF CEREBRAL
PALSY AND HAVE SEEN SOME COMMON
QUESTIONS COME ACROSS. FIRST
WHEN SHOULD I START THERAPY, HOW
CAN I AS A PARENT HELP MY BABY
NOW AS EARLY AS THE NEONATAL
INTENSIVE CARE UNIT PARENTS WANT
TO HELP AND SUPPORT THEIR BABY.
AS CHILDREN GET OLDER
PARTICULARLY NOW WHEN WE HAVE
THE EARLY DIAGNOSIS OF CEREBRAL
PALSY, PARENTS ARE LOOKING FOR
GUIDANCE ON WHICH INTERVENTION
IS BEST FOR THEIR CHILD. WE KNOW
THERE ARE PLETHORA OF
INTERVENTIONS OUT THERE
PARTICULARLY WHEN WE LOOK AT THE
INTERNET AND SEE SOMEONE A WIDE
VARIETY OFFER LACK OF EVIDENCE
BASED INTERVENTIONS THAT ARE
PRESENT M. PARENTS NEED
GUIDANCE. LAST, PARENTS ARE ALSO
INTERESTED IN WHAT HAPPENS IF
THEY DELAY. SOMETIMES IT IS NOT
THE RIGHT TIME FOR OUR FAMILY TO
START INTERVENTION AND SOMETIMES
THEY NEED TO KNOW WHAT THE
CONSEQUENCES COULD BE IF THEY
DIDN'T DISCERN THE INTERVENTION
NOW AND DELETE IT. SO WE NEED
SOLID INTERVENTION WHEN IS THE
BEST TIME AND WHAT THE
CONSEQUENCES ARE IF THEY DON'T
START INTERVENTION NOW. WE THINK
ABOUT EARLY DETECTION THE MOST
COMMON THING WE LOOK AT IS THE
NEWBORN SCREENING PROCESS IN THE
UNITED STATES. THE NEWBORN
SCREENING PROCESS STARTS OUT BY
IDENTIFYING INFANTS AT HIGH RISK
OF METABOLIC DISORDERS AND
SIMILAR DISORDERS THAT CAN BE
DETECTED AT BIRTH. HOWEVER, IF
YOU LOOK AT THE EVOLUTION OF
EARLY DETECTION PROGRAM, OVER
THE LAST 30 TO 40 YEARS,
INFORMATION IS NOT ADDED TO THE
EARLY DETECTION GUIDELINES UNTIL
INTERVENTION IS AVAILABLE. WE
ARE IN THE SAME PLACE WHEN WE
LOOK AT CEREBRAL PALSY. THE
UTILIZATION OF THIS EARLY
DETECTION GUIDELINE HAS BEEN
VERY SLOW TO UPTAKE IN THE
UNITED STATES. AND PIECE OF THIS
I HEAR FROM CLINICIANS AND AND
RESEARCHERS AROUND THE COUNTRY
DOES IT MATTER? IF YOU IDENTIFY
THE CP EARLY IS IT GOING TO
CHANGE YOUR COURSE OF TREATMENT?
FOR THOSE UNDER FIVE MONTHS OR
THOSE OVER FIVE MONTHS. I'M HERE
TO SUGGEST IT SHOULD CHANGE FOR
THE COURSE OF TREATMENT FOR THAT
CHILD BUT WE NEED MORE
INFORMATION. WHEN WE LOOK AT
THIS GRAPHIC, ON THE LEFT IS THE
REPRESENTATION OF THE ARTICLE
PUBLISHED BY (INAUDIBLE) IN
2013. I WANT TO HIGHLIGHT HERE
EARLY INTERVENTION WAS RATED AS
YELLOW OR A PROBABLY DO IT BUT
WE DIDN'T HAVE SOLID EVIDENCE
FOR THE FIELD. LOOKING AT 2020
AT THE UPDATE OF THIS ARTICLE WE
STILL SEE THAT EARLY
INTERVENTION CUP ALL IN YELLOW,
WITHOUT SOLID EVIDENCE FOR
INTERVENTION TO SUPPORT MOTOR
FUNCTION IN AN EARLY
INTERVENTION SETTING. ONE OF THE
CHAT LENGS OF INFANT RESEARCH IS
MANY RESEARCH IDEAS AND
INTERVENTIONS COME FROM ADULT
LITERATURE AND PASS DOWN TO
OLDER CHILDREN, PRIOR TO
IMPLEMENTATION AND YOUNG
INFANTS. THEY MAY NOT BENEFIT
FROM THE SAME INTERVENTIONS
SCALED DOWN. THAT WE SEE IN
ADULT POPULATIONS. WE NEED
INTERVENTIONS THAT ARE
SPECIFICALLY DESIGNED FOR THESE
YOUNG INFANTS. MANY READ THE
PAPERS AND SEEN INFORMATION ON
USE OF NDT IN NEURODEVELOPMENTAL
TREATMENT IN CHILDREN WITH
CEREBRAL PALSY. I WANT TO POINT
OUT THIS ANALYSIS PUBLISHED THIS
YEAR IN 2022, REITERATING THE
FINDINGS FROM PAST META ANALYSES
SUGGESTING NDT IS NOT EFFECTIVE,
NOT COMPARED AGAINST ANY THERAPY
THEY LOOKED AT INCLUDING
ACTIVITY BASED INTERVENTIONS AND
BODY STRUCTURE AND FUNCTION
WHICH WILL GO BETTER THAN NDT
AND NDT COMPARED AGAINST NO
THERAPY OR HIGH OR LOW DOSE,
SHOW NO DIFFERENCE. THIS
SUGGESTS NEURODEVELOPMENTAL
TREATMENT IS NOT AN APPROPRIATE
INTERVENTION FOR CHILDREN WITH
CEREBRAL PALSY. NEXT LOOK AT THE
SYSTEMATIC REVIEW AND CLINICAL
PRACTICE GUIDELINES PUBLISHED IN
2021, BY CATHY MORGAN AND
COLLEAGUES. MOST OF YOU ARE
PROBABLY FAMILIAR WITH THIS
ARTICLE, IT IS A LARGE AMOUNT OF
INFORMATION TO CONSUME. ONE
PRIMARY FINDING IS WHEN YOU LOOK
AT CHILDREN WITH MOTOR
IMPAIRMENTS AND GOALS OF
IMPROVING MOTOR FUNCTION THE TWO
PRIMARY INTERVENTIONS FOUND
EFFECTIVE WERE CP SPECIFIC EARLY
INTERVENTION INCLUDING TASK
SPECIFIC MOTOR TRAINING AND THEN
CIMT OR CONSTRAINT INDUCED
MOVEMENT THERAPY. TODAY WE LOOK
AT THOSE TWO AREAS EXTENDING
BEYOND WHAT WAS DONE THIS IN
THIS CLINICAL PRACTICE GUIDELINE
TO THE NEWER EVIDENCE OUT THERE
OR BEING COMPLETED RIGHT NOW.
THIS IS A GRAPHIC YOU WILL SEE
SEVERAL TIMES THROUGHOUT THE
REST OF MY TALK SO I WILL ORIENT
YOU TO WHAT IT LOOK LIKE THE
GRAY BAR ACROSS THE TOP
REPRESENTS AGE AND MONTHS AND
MIDDLE SECTION REPRESENTING THE
TIME PERIOD CHILDREN ARE
ELIGIBLE FOR EARLY INTERVENTION
MANDATED UNDER IDEA. EACH ROW
UNDERNEATH THAT REPRESENTS A
SPECIFIC STUDY, IT IS A SUB
ANALYSIS OF DIFFERENT GROUPS
WHEN THE STUDY IS COMPLETED
MAYBE REPRESENTING TWO SEPARATE
ROWS. ANYTHING IN BLUE
REPRESENTS AN INTERVENTION THAT
IS STARTED AT THE TIME OR AFTER
EARLY DIAGNOSIS IS POSSIBLE
BETWEEN THREE AND SIX MONTHS OF
AGE WHILE GREEN REPRESENTS
INTERVENTIONS THAT CAN START AT
THE VERY BEGINNING OF THE EARLY
DIAGNOSTIC PROSIS OR START PRIOR
TO IT. ALL STUDIES LABEL WITH
HASH MARKS ON THEM TO REPRESENT
THE LENGTH OF TIME INTERVENTION
IS DONE. INTERVENTION COULD
START ANYWHERE IN THE COLOR BAR,
BUT LENGTH OF TIME REPRESENTED
BY THE HASH MARKS THE STAR
REPRESENTS STUDIES I WILL
SPECIFICALLY TALK ABOUT AND ALL
STUDIES ARE COMPLETED UNLESS
LABELED AS ONGOING STUDY. SO I
WILL START TALKING ABOUT THE THE
REACH TRIAL AND THANK ROSS BOYD
FOR SHARING HER SLIDES. THIS IS
AMAZING STUDY DESIGNED TO LOOK
AT THE COMPARISON BETWEEN
BIMANUAL THERAPY AND CONSTRAIN
INDUCED THERAPY IN YOUNG
CHILDREN. THEY WERE ENROLLED
BETWEEN THREE AND NINE MONTHS OF
AGE AND HAD A DOSE MATCH
INTERVENTION THAT WAS PROVIDED
UP UNTIL 12 TO 15 MONTHS OF AGE
DEPENDING WHEN THE CHILD WAS
ENROLLED. THE DOSE OF
INTERVENTION WAS THE SAME SO THE
ACTIVE INGREDIENT COMPARING IS
UNILATERAL VERSUS BIMANUAL
THERAPY. WHILE NO SIGNIFICANT
DIFFERENCES BETWEEN THE TWO
GROUPS WHICH IS WILL BE IN
PUBLICATION SOON, ADDITIONAL
FINDING WAS VERY IMPORTANT. THIS
IS THE IDEA THAT EARLY IS
IMPORTANT. SO WHEN THEY LOOK AT
THE DATA ON CHILDREN WHO STARTED
THE INTERVENTIONS BETWEEN THREE
AND SIX MONTHS OF AGE SO VERY
EARLY WINDOW FOR EARLY DETECTION
COMPARED TO THOSE CHILDREN WHO
STARTED AFTER SIX MONTHS OF AGE
THEY IDENTIFY THERE WAS A
DIFFERENCE BETWEEN GROUPS AT THE
POST INTERVENTION TIME POINT. SO
IN BOTH METRICS THEY COMPAREDD
ON HAND ASSESSMENT OF INFANTS,
INFANTS WHO STARTED EARLY HAD A
BETTER OUTCOME THAN THOSE WHO
STARTED AT SIX TO NINE MONTHS.
THIS IS NOT CONSIDERED LATE TO
START INTERVENTION AT SIX TO
NINE MONTHS BUT IF NEW
INTERVENTION WOULD BE MORE
EFFECTIVE BETWEEN THREE AND SIX
MONTHS OF AGE THEY MAY BE MORE
LIKELY TO START THAT
INTERVENTION. LET'S SWITCH GEARS
TO TALK TASK SPECIFIC TRAINING.
SPECIFICALLY LOOK AT SPECIFIC
TRAINING AFTER DIAGNOSIS CAN
HAPPEN. BETWEEN THREE AND SIX
MONTHS FOR THE MOST PAR PART. SE
WILL TALK SPECIFICALLY ABOUT
THESE INTERVENTIONS ALL WHICH
ARE AS YOU CAN SEE ONGOING WITH
THE EXCEPTION OF ONE, THE START
PLAY TRIAL. THIS IS VERY
DIFFERENT FROM WHAT WE SAW IN
THE BIMANUAL CIM LITERATURE AND
LARGE PIECE OF THAT IS BIMANUAL
INTERVENTION AND CIMT HAVE BEEN
AROUND LONG IRAND RESEARCHED
WITH EXTENSIVE FUNDING FOR
LOOKING AT THE IMPLEMENTATION IN
BOTH ADULT AND PEDIATRIC
POPULATION. THE INTERVENTIONS
REPRESENTED HERE ARE ALSO FAIRLY
NEW, THEY HAVE SOME COMMON
PRINCIPLES ACROSS THEM, BUT THEY
EXCHANGE HAPPENS INDEPENDENTLY
AND IN DIFFERENT TRIALS. THEY
ALSO WERE FUNDED MUCH MORE
RECENTLY WHICH IS -- MEANS THEY
ARE STILL ONGOING IN MANY CASES
THE START PLAY TRIAL SITTING
TOGETHER AND REACHING TO PLAY,
WAS COMPLETED TO LOOK AT THE
EFFICACY OF THIS INTERVENTION
SPECIFICALLY IN CHILDREN WITH
NEUROMOTOR DISORDERS. THAT MEANS
CHILDREN DIDN'T HAVE TO HAVE A
DIAGNOSIS OF CEREBRAL PALSY, BUT
THEY COULD HAVE HAD A DIAGNOSIS
OF CEREBRAL PALSY. THIS CLINICAL
TRIAL WAS FUNDED BY THE
DEPARTMENT OF EDUCATION THROUGH
IES AND LED BAREGE YES AND WAS
PROD TO BE PART OF THE SITE AT
VIRGINIA COMMONWEALTH
UNIVERSITY. THE MAIN PIECE I
WANT YOU TO TAKE HOME FROM THIS
DISCUSSION IS THAT THE
INTERVENTION FROM START PLAY IS
DIFFERENT. IT BUILDS AND
SCAFFOLDS MOTOR COGNITIVE SKILLS
TOGETHER. THIS IS QUITE
DIFFERENT THAN TRADITIONAL
PHYSICAL THERAPY WHICH IS
PRIMARILY FOCUSED ON MOTOR
FUNCTION AND IMPROVING MOTOR
ACTIONS. PARENTS WERE ALWAYS
ENGAGED IN THE INTERVENTION AND
ENCOURAGED TO LEARN HOW TO SET
THE ENVIRONMENT UP, IN ORDER TO
HELP THE CHILD CONTINUE TO
PRACTICE THIS MOTOR BASE PROBLEM
SOLVING THROUGHOUT THEIR DAY TO
DAY ACTIVITIES. THE OUTCOMES FOR
THIS STUDY WERE DIVIDED TO
COMPARISONS BY GROUP FOR THOSE
WITH MILD MOTOR IMPAIRMENT AND
WILL IS A SIGNIFICANT MOTOR
IMPAIRMENT BECAUSE MAJORITY OF
CHILDREN WITH CEREBRAL PALSY
WERE IN SIGNIFICANT MOTOR
IMPAIRMENT GROUP AND
REPRESENTATIVE OF THAT
POPULATION I'M ONLY PRESENTING
THOSE RESULTS TODAY. THIS
INTERVENTION WAS EFFECTIVE AND
IMPROVING LONG TERM OUTCOMES IN
SOME AREAS AS WELL AS SHORT TERM
OUTCOMES. THE GREEN REPRESENTS
THE AREAS STATISTICALLYSIS CAN'T
AND THE YELLOW REPRESENTS THOSE
THAT HAD LARGE EFFECT SIZE BUT
NOT STATISTICALLYSIS CAN'T. AS
YOU CAN SEE THE INTERVENTION
THAT TARGETED MOTOR SKILLS
SITTING REACHING AND THEN
PROBLEM SOLVING ACHIEVE THIS
GOAL OF IMPROVING REACHING
SITTING AND SHORT TERM PROBLEM
SOLVING LIKE TO IMPROVEMENTS IN
SHORT TERM COGNITION, SOME
IMPROVEMENTS IN MOTOR SKILLS AS
WELL AS IN FINE MOTOR SKILLS.
THESE ARE SUBSTANTIAL
IMPROVEMENTS AFTER 24 VISITS
PROVIDED OVER 12 WEEKS OR TWICE
WEEKLY THERAPY FOR 123 WEEKS.
THIS LED TO THE SECOND TRIAL OF
THE PT WE CALL SIT PT. THIS IS
AN INTERVENTION TRIAL THAT IS
DESIGNED TO SPECIFICALLY COMPARE
TWO DOSE MATCH INTERVENTIONS.
BECAUSE THE PREVIOUS TRIAL WAS
NOT DOSE MATCHED. HOWEVER IN
THE PREVIOUS TRIAL WE WERE ABLE
TO VIDEOTAPE THERAPY SESSIONS IN
THE USUAL CARE GROUP WHICH ALLOW
US TO FIGURE OUT WHAT IS USUAL
CARE ACROSS THE COUNTRY, AND
FIVE ASSESSMENT SITES, AS A
RESULT MORE PT INTERVENTION IS
VERY SPECIFICALLY DESIGNED TO
REPRESENT INTERVENTION CURRENTLY
BEING DONE IN EARLY INTERVENTION
AND THAT ALLOWS A SOLID
COMPARISON. THE MORE PT START
PLAY GROUP GET 24 VISITS OVER 12
WEEKS OR TWICE WEEKLY
INTERVENTION AND CONTINUING
THEIR USUAL CARE. WE ARE
CURRENTLY ENROLLING THIS STUDY
LOS ANGELES SEATTLE AND OMAHA
AND HOPE TO CLOSE ENROLLMENT IN
TWO YEARS. THE I MOVE TRIAL IS
SPECIFICALLY DESIGNED TO LOOK AT
MOTOR ABILITY AND MOBILITY
TRAINING BUT WITH AN ADVERSE --
EMPHASIS ON VARIABILITY AND
ERROR. THE I MOVE GROUP SPENDS
TIME IN ZERO G DESIGNED FOR
YOUNG INSTANCE TO PROVIDE BODY
WEIGHT SUPPORT BUT ALLOW
CHILDREN TO MOVE FLUIDLY BETWEEN
POSITIONS. THEY COME IN TO
CLINIC TWICE A WEEK FOR 24 WEEKS
AND COMPARISON GROUP ARE
CHILDREN OF CHILDREN GETTING
CONVENTIONAL INTERVENTION IN THE
SAME LOCATION. WHILE THIS TRIAL
CLOSED DATA COLLECTION AND
PRIMARY OUTCOME SHOULD BE
PUBLISHED BY JUNE, ONE OF THE
PRIMARY FINDINGS INTERESTING IS
TO LOOK AT THE DEVELOPMENT OF
VARIABILITY IN CHILDREN WHO HAVE
CEREBRAL PALSY. MEAN AGE OF
ENROLLMENT WAS 24 MONTHS WITH
RANGE OF ONE TO THREE YEARS OF
AGE, THIS IS A THE OLDER WINDOW
OF CHILDREN WHO ARE IN THE EARLY
INTERVENTION SYSTEM. THE DRIVE
STUDY RUN BY -- AT THE OHIO
STATE UNIVERSITY IS ONE OF THE
FEW CLINICAL TRIALS SPECIFICALLY
DESIGNED TO SUPPORT AND EVALUATE
THE EFFICACY OF INTERVENTION IN
IN CHILDREN WITH LEVELS OF THREE
TO FIVE TO SO MORE SIGNIFICANTLY
INVOLVED. THIS TRIAL IS
SPECIFICALLY DESIGNED TO COMPARE
DIFFERENT WAYS OF DELIVERING
INTERVENTION BUT WITH THE SAME
DOSE OF 40 HOURS. THIS SHOULD
HELP CLINICIANS IDENTIFY DOESN'T
MATTER WHICH PATTERN OF
INTERVENTION WHERE WE SCHEDULING
SYSTEM YOU UTILIZE. WHICH HELP
PARENTS UNDERSTAND THE OPTIONS
THAT THEY HAVE AND WHAT MIGHT BE
BEST FOR THEIR INDIVIDUAL TRIAL.
THE TRIAL RUN BY CATHY MORGAN IS
CONTINUING TO COLLECT DATA IN
AUSTRALIA. THIS TRIAL IS
SPECIFICALLY DESIGNED AND
ENROLLED CHILDREN FROM THREE TO
NINE MONTHS OF AGE AND
PRINCIPLES OF THE INTERVENTION
LOOK AT MOTOR BASED ACTIVITY AND
MOTOR TRAINING BUT ALSO HELPING
TO ENRICH ENVIRONMENT FOR
INFANTS AT HIGH RISK FOR CP. THE
PRIMARY FOCUS IS AROUND THE IDEA
OF MOTOR FUNCTION AND IMPROVING
MOTOR BASE SKILLS IN CHILDREN
HOWEVER THEY ARE MEASURING
COGNITIVE AND MOTOR OUTCOMES SO
THIS WILL BE GREAT INFORMATION
TO HAVE WHEN DATA COLLECTION
CLOSES AND ANALYSIS COMMENCES IN
2023. SO COMING BACK TO OUR
GRAPHIC ABOUT TASKS SPECIFIC
TRAINING AFTER INTERVENTION, YOU
CAN SEE THAT THERE IS THIS GAP
WE DON'T HAVE A LOT OF
INTERVENTIONS THAT START RIGHT
AT THE TIME OF DIAGNOSIS
PARTICULARLY IF THE CHILD IS
DIAGNOSED AT THREE MONTHS OF
AGE. IN ADDITION WE DON'T HAVE
INTERVENTIONS REPRESENTED HERE
THAT START PRIOR TO ONSET OF
DIAGNOSIS. MANY LOOK AT THIS
AND SAY OKAY, THAT IS ALL RIGHT,
LET'S DO THE EARLY DETECTION,
IDENTIFY KIDS AT THE HIGHEST
RISK AND THEN START THEM EARLY
INTERVENTION SERVICES AT THAT
POINT. HOWEVER, WHEN WE LOOK AT
THE ACCESS TO EARLY INTERVENTION
SERVICES ACROSS THE COUNTRY ONLY
ABOUT FIVE PERCENT OF CHILDREN
WHO ARE ELIGIBLE FOR EARLY
INTERVENTION SERVICES ARE ABLE
TO SUCCESSFULLY NAVIGATE THE
SYSTEM AND GET INTO EARLY
INTERVENTION. THAT MEANS OUT OF
14,000 CHILDREN CONFERRED OR
CONSIDERED ELIGIBLE FOR EARLY
INTERVENTION BASED ON CONDITION
OR DEVELOPMENTAL DELAY ONLY
3,000 WERE REFERRED AND THEN
WITHIN THAT GROUP ONLY 500
ACTUALLY COMPLETED THEIR
FUNCTIONAL OUTCOME DATA
COMPLETED INTERVENTION AND
STARTED THE EARLY INTERVENTION
PROCESS. THAT MEANS WE HAD OVER
14,000 CHILDREN WHO DIDN'T GET
THE SERVICES THEY NEEDED. THERE
ARE MANY BARRIERS TO ENTRY TO
EARLY INTERVENTION, AS YOU CAN
SEE ALREADY LOOKING AT THESE
TIERS ALONG WITH THIS GRAPHIC
THERE'S MULTIPLE STEPS BEING
EVALUATED, PLANNING YOUR
SERVICES AND THEN ACTUALLY
STARTING SERVICES. IN ADDITION
WE KNOW THERE'S SUBSTANTIAL
RACIAL ETHNIC DIVERSITY,
CHALLENGES AROUND ACCESS TO
SERVICES. PEOPLE WHO COME FROM
UNDER-REPRESENTED GROUPS, OR
MINORITIZED GROUPS DON'T GET
REFERRED TO EARLY INTERVENTION
SERVICES AT THE SAME RATE. AND
THEY HAVE DIFFICULTY ACCESSING
THOSE SERVICES EVEN IF THEY
SERVE. WE DON'T SPECIFICALLY
IDENTIFY CHILDREN BORN PRE-TERM
HAVING CEREBRAL PALSY. WE DO
KNOW THERE'S CERTAIN GROUPS
HIGHER RISK. WHEN WE LOOK AT THE
GROUP OF CHILDREN BORN BETWEEN
22 AND 26 WEEKS GESTATION, THE
RECENT PUBLICATION SUGGESTED
THAT 78% WILL SURVIVE. HOWEVER
IF YOU LOOK AT THE SUPPLEMENTAL
DATA, 18% CHILDREN HAD CEREBRAL
PALSY. INTERESTINGLY WHEN YOU
LOOK AT THE GRAPHICS ON THE RATE
OF SEVERE NEURODEVELOPMENTAL
IMPAIRMENT, MODERATE AND MILD,
IT IS SOMEWHAT DECEIVING AND
CONFUSING BECAUSE CHILDREN WITH
GNS CS LEVEL 1 MEANING HAVE
CEREBRAL PALSY BUT AMBULATORY
WITHOUT ASSISTIVE DEVICE, THOSE
CHILDREN ARE IN THE MILD TO NO
IMPAIRMENT CATEGORY. BUT I WOULD
HAZARD TO SAY IF YOU ASK THE
PARENT OF A CHILD WITH CS LEVEL
OF 1 IF THEY WERE ANY
DISABILITYSTHEY LIKELY SAY YES.
SO THIS NEEDS TO BE CONSIDERED
IN THE INTERPRETATION OF ALL
DATA TO WHAT PEOPLE ARE RATING
IN TERMS OF SEVERITY OF
IMPAIRMENT. I WOULD SUGGEST IF
WE LOOK AT THE RATE OF
IMPAIRMENT IN THESE YOUNG
CHILDREN WE WOULDN'T BE HARMING
THESE CHILDREN TO START
INTERVENTION EARLY, PRIOR TO
DIAGNOSIS OF CEREBRAL PALSY.
BASED ON THEIR EARLY RISK
FACTORS AND THE HIGH LIKELIHOOD
THEY MAY HAVE CEREBRAL PALSY. IN
ADDITION IF WE LOOK AT THAT
PRE-TERM POPULATION AGAIN AND
ONLY LOOK AT THOSE KIDS WITHOUT
CEREBRAL PALSY, UP TO 50% OF
THEM WILL HAVE SOME MOTOR
IMPAIRMENT ON (INAUDIBLE). THIS
IS SUBSTANTIAL DEFICIT THAT
CHILDREN ARE DEMONSTRATING AS
SCHOOL AGE WHICH MAY IMPACT
THEIRANT TO KEEP UP WITH PEERS,
IMPACT THEIR SELF-ESTEEM AS WELL
AS MR.INGNESS TO PARTICIPATE. SO
LET'S GO BACK TO THIS IDEA OF
TASK SPECIFIC TRAINING. FROM THE
BEFORE DIAGNOSIS WE CAN LOOK AT
TASK SPECIFIC TRAINING AND THINK
ABOUT INTERVENTIONS THAT MAYBE
APPROPRIATE TO START EITHER VERY
EARLY PHASE OF OR BEFORE THAT. I
WILL HIGHLIGHT THE SPEEDY TRIAL
OR INTERVENTION TRIAL
SPECIFICALLY LOOKING AT DOES
TINY MATTER WHEN WE START
INTERVENTION WITH ADVANCE. THIS
IS A CHILD BEING LED BY MYSELF
AND THE COLLABORATION WITH THE
UNIVERSITY OF VIRGINIA, AND
VIRGINIA COMMONWEALTH
UNIVERSITY. THIS INTERVENTION IS
SPECIFICALLY DESIGNED TO SCALL
FOLD PARENTS ABILITY TO SUPPORT
INFANTS. FROM THE NICU TO THREE
MONTHS OF AGE, WE SPENT THE
MAJORITY OF THE TIME HELPING
PARENTS DECIDE HOW AND WHEN TO
INTERACT WITH THEIR BABY IN A
WAY TO SUPPORT DEVELOPMENT. THE
GOAL IS NOT TO PROVIDE THERAPY
SERVICES WHERE THERAPIST IS
DOING THE WORK BUT RATHER
SCAFFOLD PARENTS ABILITIES AND
PREPARE THEM TO SUPPORT THEIR
INFANT OVER THEIR LIFETIME.
INTERVENTION CAN BE PROVIDED IN
PERSON, THROUGH TELEMEDICINE
USING A COMBINATION OF VIDEOS,
AND INFORMATION THAT IS PROVIDED
ON A WEB-BASED PLATFORM OR IN A
WRITTEN FORMAT. YOU WILL SEE
HERE THAT TWO BOXES REPRESENT
THE TIME PERIODS WHICH
INTERVENTION IS DELIVERED WITH
THE SPEEDY EARLY PERIOD ENDING
ABOUT FOUR MONTHS OF AGE AND THE
SPEEDY LATE GROUP STARTING THE
SAME TIME POINT WHICH IS FAIRLY
CONSISTENT WHEN INTERVENTION
STARTS IN MOST PLACES. THIS
ENTERRECOLLECTION IS ALSO
BLENDED WITH MENTAL HEALTH
OUTCOMES INTERVENTION THAT
SPECIFICALLY IS DESIGNED IN IN
AUSTRALIA WITH COLLABORATION
WITH LISA TO LOOK AT THE
OUTCOMES FOR BOTH PARENTS AND
CHILDREN WHO PARTICIPATE IN THIS
TYPE OF -- SO PREVENTION IS A
KEY TO MEDICAL CARE IN MANY
AREAS BUT HERE WE ARE TALKING
ABOUT THE FACT THAT WE ARE
WAITING UNTIL CHILDREN ARE
DIAGNOSED. BEFORE WE START
INTERVENTION. WE COULD BE
STARTING INTERVENTION EARLIER.
WHAT MIGHT THAT LOOK LIKE? THERE
IS OTHER CHALLENGES WE SEE
ENROLLING YOUNG CHILDREN IN
CLINICAL TRIALS THAT MAY ALSO BE
IMPACTING OUR OUTCOMES. FIRST
IS THIS IDEA FAMILY MIGHT BE
INTRODUCED TO THIS CLINICAL
TRIAL FOR A TRIAL FOR CHILDREN
WITH CEREBRAL PALSY. HOWEVER
MANY YOUNG CHILDREN ARE NOW
DIAGNOSED WITH ENCEPHALOPATHY OR
WHITE MATTER INJURY OR
INTERVENTIONAL HEMORRHAGE.
PARENTS ARE TOLD THOSE TERMS AND
NOT NECESSARILY THE TERMS
CEREBRAL PALSY. AS A RESULT THEY
MAY NOT THINK THEIR CHILD IS
ELIGIBLE. ON TOP OF THAT THE
INCREASING NUMBER OF GENETIC
DIAGNOSES YOU HEARD ABOUT
YESTERDAY AND YOU HAVE TO THINK
ABOUT PARENTS TO IDENTIFY DOES
MY CHILD MEET ELIGIBILITY
CRITERIA, SHOULD I CALL THIS
FAMILY. WE OFTEN FIND FAMILIES
SAYING MY CHILD HAS HYDRO
SYPHILOUS, MY CHILD HAS BRAIN
INJURY, THEY DON'T HAVE CEREBRAL
PALSY, THEY CAN'T PARTICIPATE.
OTHER FAMILIES SAY NO MY BABY IS
A PRIMEIE SO THEY WILL GROW OUT
OF THEIR PROBLEMS AS THEY GET
BIGGER SO NOT ELIGIBLE NOR STUDY
ON CEREBRAL PALSY. THIS
DRASTICALLY REDUCES RATE OF
ENROLLMENT AND INTERVENTION
STUDIES FOR YOUNG INFANTS SO WE
NEED CLARITY IN DIAGNOSIS THAT
WHILE ETIOLOGY MAYBE RELATED TO
A BRAIN INJURY, OR GENETIC
CONDITIONS MANY KIDS ARE
ELIGIBLE FOR INTERVENTION
STUDIES THAT ARE DESIGNED FOR
KIDS WITH CEREBRAL PALSY. SO
WHERE DO WE GO WITH THIS
INFORMATION? SO EVIDENCE INFORMS
CARE PLANNING IS NEEDED. WE NEED
TO TAKE THE INFORMATION WE HAVE
AND START WITH NEONATAL
INTENSIVE CARE UNIT AND CONTINUE
TO EARLY INTERVENTION AND EARLY
DIAGNOSIS. ULTIMATELY WE WANT
PARENTS TO GET TO THE POINT OF
DIAGNOSIS, ALL READY FEELING
LIKE THEY ARE INDEPENDENT AND
CAPABLE OF SUPPORTING INFANT
DEVELOPMENT. THAT DOESN'T MEAN
WE ARE NOT LOOKING AT EARLY
DETECTION, IT MEANS IT IS JUST
IMPORTANT TO SUPPORT PARENTS
UNTIL THEY GET THERE. SO WHEN WE
THINK ABOUT WHAT THE NEXT STEP
ISIS. WE THINK PARENTS ASKING
WHICH INTERVENTION IS BEST FOR
THEIR CHILD. ALL THESE CHILDREN
SHOULD BE GOING THROUGH THE
EARLY DETECTION GUIDELINES AND
BEING IDENTIFIED AS HIGH RISK OR
NOT BUT THE TREATMENT SHOULD BE
DIFFERENT DEPENDING ON WHICH OF
THESE CATEGORIZATIONS THEY FALL
INTO. SO A CHILD WHO HAS
UNILATERAL INJURY IS LIKELY TO
BENEFIT FROM CIFT OR BIMANUAL
THERAPY THAT SHOULD BE STARTED
AS SOON AS POSSIBLE. WHY WOULD
CHILDREN WHO HAVE BILATERAL
INJURY MAY BENEFIT FROM GAME OR
EYE MOVE TO LOOK AT MOTOR
FUNCTION OR START PLAY TO LOOK
AT MOTOR COGNITIVE FUNCTION. IN
MANY CONTRAST IF WE CAN IDENTIFY
THE KIDS WHO ARE NOT AT HIGH
RISK WE CAN DELAY THE REDUCE
AMOUNT OF INTERVENTION THOSE
CHILDREN ARE GETTING AND TRULY
EXPLAIN TO FAMILIES WHY, TO BE
ABLE TO SAY YOUR CHILD HAS A
DELAY BUT DOESN'T HAVE CEREBRAL
PALSY MAY WARRANT PARENT
COACHING AND PROGRESS MONITORING
ENCOURAGING PARENTS TO CONTINUE
TO SUPPORT THEIR CHILD
DEVELOPMENT. WHILE HAVING NO
DELAY AND NO RISK, MAY WARRANT
ANTICIPATORY GUIDANCE AND
REASSESSMENT OF REGULAR
INTERVALS BUT THESE CHILDREN
DON'T NECESSARILY NEED INTENSITY
OF INTERVENTION WHICH SOMETIMES
THEY ARE PROVIDED BECAUSE
PARENTS ARE VERY GOOD ADVOCATES
BUT DON'T NEED AS MUCH SERVICE
AS CHILD WITH CEREBRAL PALSY. SO
ARE WE NOW? WE A NEED FOR
RESEARCH AND INTERVENTION.
ENCOURAGE EARLY DIAGNOSES AND
THE CONVERSATIONS ABOUT CEREBRAL
PALSY AND PARTICIPATION IN CP
SPECIFIC RESEARCH. BUILDING IN
THAT WORK SOMETHING LIKE CP NET
OR STROKE NET FOR CP. WOULD BE
AN EXCELLENT WAY TO INCREASE THE
NUMBER OF CLINICAL TRIALS THAT
ARE BEING DONE ACROSS THE
COUNTRY SO ALL FAMILIES WHO WANT
TO PARTICIPATE IN RESEARCH CAN
AND CAN FIND A JO APPROPRIATE FR
THEIR CHILD. WE NEED RESEARCH ON
BILATERAL CP OR INJURIES THAT
OCCUR AFFECTING BOTH SIDES OF
THE BODY. WE NEED TO CATCH UP
WHERE UNILATERAL RESEARCH IS. WE
NEED STUDY ON IMPACT OF
PROVIDING INTERVENTION PRIOR TO
DIAGNOSIS AND CONSIDERING DOES
THIS PRIME PARENTS AND INFANTS
TO PROVIDE MORE APPROPRIATE
SERVICES, TO THEIR CHILD WHEN
THEY ARE DIAGNOSED WITH CP. WE
HAVE TO CONSIDER THE NEEDS OF
PARENTS AT EACH AND EVERY STAGE
AROUND THIS. I WILL CLOSE TODAY
WITH A QUOTE FROM A PARENT WHO
PARTICIPATED IN ONE OF OUR
INTERVENTION TRIALS AROUND
SPEED. HIS FATHER SAID AT FIRST
IT WAS HARD UNTIL WE GOT INTO A
ROUTINE. BUT AT FIRST SPEEDY
ACTIVITIES WERE HARD BUT NOW IT
IS LIKE PART OF THE DAY. LIKE
BREATHING. IT IS JUST SOMETHING
WE DO. IF WE CAN EMPOWER
FAMILIES TO DO INTERVENTION WITH
THEIR BABY IN A WAY THAT IS
PLAYFUL AND PART OF THEIR DAILY
ROUTINE, IN THE FIRST MONTHS OF
LIFE THEY WILL BE PREPARED TO
SUPPORT THEIR INFANT WITH AN
EARLY DIAGNOSIS OF CP IN A WAY
TO ADVANCE OUR FIELD AS WELL AS
DEVELOPMENT OF THAT INDIVIDUAL
TRIAL CHILD. I THANK YOU FOR
YOUR ATTENTION TODAY AND THANK
THE SIDES AND COLLABORATORS AND
THERAPISTS PARTICIPATING IN THIS
RESEARCH AND OUR FUNDING SOURCES
AND THE NIH NOR ALLOWING US TO
BE HERE TODAY. THANK YOU. FOR
ALLOWING US TO BE HERE.
>> MY NAME IS KATIE HOUSTON, I'M
HERE TO TALK ABOUT A
LONGITUDINAL PROJECT I CAN
WORKING ON FOR 15 YEARS, SPEECH
AND LANGUAGE DEVELOPMENT IN
CHILDREN WITH CEREBRAL PALSY. I
WILL GIVE A FEW HIGHLIGHTS OF
OUR LONGITUDINAL FINDINGS
FOCUSED SPECIFICALLY ON SPEECH
IN CHILDREN AND YOUNG ADULTS
WITH CEREBRAL PALSY. SO I'M
GOING TO CUT TO THE CHASE HERE
CINESEISMOGRAPHY PSALM OUR
AUDIENCE IS LARGELY FAMILIAR
WITH CEREBRAL PALSY. AND GENERAL
CHARACTERISTICS AS MEDICAL
CONDITION. AND FOCUS RIGHT IN
HON COMMUNICATION IN THIS
POPULATION FOR MANY MANY YEARS
COMMUNICATION WAS GROSSLY
UNDERSTUDY AND OVERLOOK AND I'M
HAPPY TO SAY THAT THERE'S BEEN
MORE RESEARCH ATTENTION FOCUS ON
THE FEATURES OF COMMUNICATION IN
INDIVIDUALS WITH CP AND
POPULATION CHARACTERISTICS AS
WELL AS INTERVENTIONS FOR THIS
POPULATION. SO AS WE KNOW
CHILDREN WITH CP ARE AT
CONSIDERABLE RISK FOR SPEECH
LANGUAGE AND COMMUNICATION
PROBLEMS. THERE ARE WIDE RANGE
OF POTENTIAL CO-OCCURRING
DEFICITS AND SPEECH ROBS ARE
VERY COMMON IN THIS POPULATION
SO OUR FOCUS TODAY IS GOING TO
BE ON INDIVIDUALS WITH SPEECH
PROBLEMS PARTICULARLY THE MOTOR
SPEECH DISORDER KNOWN AS
DISARTHEROIA. I WILL TALK ABOUT
WHAT THAT IS IN JUST A MOMENT.
SO DISART THREEIA IS THE
PHYSICAL MANIFESTATION IN IF
SPEECH MUSCULATURE OF THE MOTOR
PROBLEMS THAT WE SEE IN THE REST
OF THE BODY FOR INDIVIDUALS WITH
CP. IT DOES NOT ALWAYS CO-OCCUR
IN CP, WE CAN'T HAVE INDIVIDUAL
-- WE CAN HAVE INDIVIDUALS WITH
CP WITH NO SPEECH INVOLVEMENT IN
SPEECH MUSCULATURE AND WE CAN
HAVE INDIVIDUALS WITH CP WITH
SIGNIFICANT DISART THREEIA AND
HAVE VERY LIMITED INVOLVEMENT IN
THE REST OF THEIR BODY IN TERMS
OF MOTOR CONTROL CHALLENGES SO
IT IS NOT A ONE TO ONE
RELATIONSHIP, THOUGH GENERALLY
THE MORE SEVERE AN INDIVIDUAL'S
MOTOR IMPAIRMENT IS WITH REGARD
TO GROSS MOTOR FUNCTION THE MORE
LIKELY WE ARE TO SEE A SEVERE
DISARTHEROIA. SO THERE ARE
CORRELATIONS BUT NOT ALWAYS THE
CASE THAT SPEECH MOTOR PROBLEMS
ARE DISARTHEROIA CO-OCCURS WITH
OTHER PROBLEMS. ONE CHALLENGE WE
FACE WITH IT THAT OCCURS IN 50
TO 80% OF CHILDREN WITH CEREBRAL
PALSY, IS EARLY IDENTIFICATION.
SO THE BIG CHALLENGE IS THAT
THERE IS SIGNIFICANT OVERLAP
BETWEEN EARLY DEVELOPMENTAL
FEATURES OF SPEECH THAT EMERGE
IN TYPICAL CHILDREN AND FEATURES
OF DISARTHEROIA. OR EXAMPLE
REDUCED RATE OF SPEECH,
DISTORTIONS IN THE PRODUCTION OF
SPEECH SOUNDS, AND VOICE QUALITY
KINDS OF ISSUES, AND THINGS LIKE
THAT SO CAN BE VERY HARD TO DO
DIFFERENTIAL DIAGNOSIS ON NORMAL
SPEECH MOTOR DEVELOPMENT AND
SPEECH ACQUISITION AND
DISARTHEROIA FEATURES OF SPEECH
IN YOUNG CHILDREN. AS WE KNOW,
EARLY IDENTIFICATION IS ALWAYS
BETTER BECAUSE WE CAN GET TO
EARLIER TREATMENT AND HOPEFULLY
WE CAN GET BETTER OUTCOMES FOR
OUR INDIVIDUALS WITH CP. BY
BETTER OUTCOMES HERE I'M TALKING
ABOUT IMPROVED QUALITY OF LIFE
BECAUSE OF IMPROVED ABILITY TO
COMMUNICATE FUNCTIONALLY AND
MEANINGFULLY. WE ARE ALWAYS
TRYING TO CAPITALIZE ON
NEUROPLASTICITY SO EARLY
INTERVENTION GETS US THE ABILITY
TO LEVERAGE NEUROPLASTICITY,
MORE SO THAN INTERVENTION OF
LATER AGENTS. SO IN MY
LABORATORY UNIVERSITY OF
WISCONSIN MADISON, THE WIS LAB
WE ARE INTEREST IN TWO GENERAL
GOALS FOCUSED ON INDIVIDUALS
WITH CEREBRAL PALSY. FIRST WE
ARE INTERESTED IN GENERATING
PROSPECTIVE DATABASED
LONGITUDINAL MODELS OF SPEECH
AND LANGUAGE DEVELOPMENT SO WHAT
WE ARE DOING IS FOLLOWING
CHILDREN LONGITUDESNALLY AND I
WILL TALK MORE ABOUT THAT IN A
MOMENT. IN ORDER TO RIDE WITH
THE NATURAL COURSE OF
DEVELOPMENT FOR INDIVIDUALS FROM
EARLY CHILDHOOD TO ADULTHOOD SO
WE CAN SEE HOW SPEECH AND
LANGUAGE AND COMMUNICATION
BEHAVIOR DEVELOP AND CHANGE OVER
TIME AND USE THIS OBSERVATIONAL
DATA TO PREDICT OUTCOMES AND
GUIDE TREATMENT DECISION MAKING
SO DEVELOPING STATISTIC ALVING
MODELS BASED ON OBSERVED DATA TO
PREDICT WHERE KIDS END UP. WE
ARE INTERESTED IN DEVELOPING AND
TESTING ASSESSMENTS AND
INTERVENTIONS FOR SPEECH
LANGUAGE AND COMMUNICATION
PROBLEMS IN THIS POPULATION. SO
AGAIN, THE EARLIER WE CAN
IDENTIFY CHILDREN THE EARLIER TO
TREATMENT AND BETTER TREATMENT
WE CAN DEVELOP AND USE THE WITH
BETTER OUTCOMES WE HAVE THIS
THIS POPULATION IN TERMS OF
QUALITY OF LIFE AND FUNCTIONAL
COMMUNICATION ABILITIES. SO IN
THE LAST SINCE 2005 WE HAVE
STUDYING A POPULATION OF ABOUT
SO 125 DIFFERENT CHILDREN WITH
CP. WE CAST A BROAD NET IN
RECRUITMENT OF THESE CHILDREN
FROM UPPER MIDWEST REGION OF THE
UNITED STATES, WITHIN DRIVING
DISTANCE OF MADISON, WISCONSIN
WHERE WE ARE LOCATED. WE HAVE NO
CRITERIA RELATED TO ANYTHING
EXCEPT CHILDREN HAVE DIAGNOSIS
OF CP OR SOMETHING RELATED TO
CP. PERIVENTRICULAR
LEUKOMALAYSIA OR NEONATAL
STROKE. FOR EXAMPLE. SO THE ONLY
THING WE REQUIRE OF CHILDREN IS
THEY DON'T HAVE EVIDENCE OF
HEARING IMPAIRMENT BECAUSE WE
KNOW THAT HEARING IMPAIRMENT
RESULTS IN VERY DIFFERENT GROWTH
STRAY VECTOR TORRYS AND
DEVELOPMENTAL ISSUES THAN FOR
INDIVIDUALS WHO DON'T HAVE
HEARING IMPAIRMENT WITH REGARD
TO SPEECH AND LANGUAGE
DEVELOPMENT. SO AT THIS POINT IN
TIME WE HAVE SEEN OUR CHILDREN
ABOUT 20 TIMES OVER THE COURSE
OF THE LAST 17 YEARS. AND
RECENTLY WE HAVE ADDED BABIES
WHO ARE AT RISK FOR CP BECAUSE
OF EXTENDED STAY IN THE NEONATAL
INTENSIVE CARE UNIT. THIS IS
RIGHT BEFORE THE PANDEMIC THAT
WE BEGAN SEEING THESE CHILDREN
SO WE HAVE HAD SOME DATA
COLLECTION CHALLENGES ASSOCIATED
WITH THE PANDEMIC BUT WE ARE
FOLLOWING 38 OF THESE CHILDREN
TO TRY TO UNDERSTAND THE
EARLIEST PRECURSORS FOR THE
ONSET OF SPEECH DEVELOPMENT. SO
THIS IS ALL A PROSPECT ACTIVE
BEHAVIORAL SPEECH AND LANGUAGE
STUDY WHICH MAKES IT VERY
DIFFERENT FROM OTHER RESEARCH
THAT IS PUBLISHED RECENTLY THAT
HAS INVOLVED MORE INDIRECT
METHODS, CHARACTERIZING CHILDREN
AND THEIR COMMUNICATION
ABILITIES WHERE CHART REVIEWS
AND EPIDEMIOLOGICAL STUDIES HAVE
LOOKED MORE INDIRECTLY AND MORE
HOLISTICALLY AT ABILITIES IN
THESE CHILDREN. SO WE ARE
LOOKING AT WHAT WE SEE IN TERMS
OF SPEECH PRODUCTION, LANGUAGE
RECEPTIVE AND EXPRESSIVE
ABILITIES, COGNITIVE DEVELOPMENT
AND MULTI-MODAL COMMUNICATION.
WE BRING THE CHILDREN IN TO THE
LAB AT THE UNIVERSITY OF
WISCONSIN, WE RECORD THEM WITH
AUDIO AND VIDE VIDEO. WE SPEND T
OF TIME TALKING WITH THE PARENTS
AND HAVING THEM COMPLETE
QUESTIONNAIRES ABOUT THEIR
OBSERVATIONS OF THEIR CHILD'S
DEVELOPMENT AND GATHER
SUPPORTING DOCUMENTATION
INCLUDING MEDICAL RECORDS,
THERAPY REPORTS, SCHOOL IEPs,
ET CETERA, SO WE ARE GATHERING
LOTS OF SOURCES OF DATA TO
UNDERSTAND THE COURSE OF
DEVELOPMENT FOR THESE CHILDREN
IN OUR STUDY. SO TODAY I WILL
TALK TO YOU ABOUT THREE OF OUR
KEY VARIABLES OF INTEREST FOR
THIS STUDY. FIRST AND FOREMOST
IS SPEECH INTELLIGIBILITY. EVEN
BEFORE THAT WE ARE INTERESTED IN
A PERSON'S ABILITY TO PRODUCE
WORDS. WE HAVE CHILDREN WITH CP
NOT ABLE TO PRODUCE SPEECH. SO
THOSE CHILDREN, I'M NO NOT GOING
TO TALK SPECIFICALLY TODAY,
BECAUSE WE ARE FOCUSING IN ON
SPEECH VARIABLES AND SPEECH
DATA. WE LOOK AT HOW
UNDERSTANDABLE A CHILD SPEECH
IS. BY MEASURING THE NUMBER OF
WORDS THAT UNFAMILIAR LISTENERS
ARE ABLE TO LISTEN TO AND
TRANSCRIBE CORRECTLY WHEN
PRESENTED WITH CHILD SPEECH. WE
ARE LOOKING FOR THE PRESENCE OF
DISARTHEROIA WHICH I MENTIONED
IS THAT MANIFESTATION, MOTOR COB
PROBLEMS IN THE SPEECH
MUSCULATURE SO WE ARE LOOKING
FOR EVIDENCE OF SPEECH MOTOR
CONTROL ISSUES AND THINK ABOUT
SEVERITY OF THOSE SPEECH MOTOR
CONTROL ISSUES. FINALLY
LANGUAGE COMPREHENSION ABILITY.
AS I WON'T SHOW YOU THE LANGUAGE
DATA BUT WE USE LANGUAGE
ABILITIES AS A PROXY MORE OR
LESS FOR COGNITIVE DEVELOPMENT
AND WE ARE LOOKING AT PROFILES
OF CHILDREN BASED ON THEIR
OBSERVED BEHAVIORAL DATA TO HELP
UNDERSTAND WHAT THE VARIABLES
ARE THAT MAY INFLUENCE
DEVELOPMENTAL OUTCOMES WITH
REGARD THE SPEECH. USING THOSE
MEASURES WE CREATED SPEECH AND
LANGUAGE PROFILE GROUPS. THERE
ARE FOUR GROUPS AND THEY ARE
FAIRLY CRUDE IN NATURE. THERE IS
MORE TO THIS. BUT AGAIN TODAY WE
WILL FOCUS ON FOUR GROUPS
ESSENTIALLY CATEGORICAL. THESE
GROUPS ARE BASED ON PRESENCE OR
ABSENCE OF SPEECH MOTOR
INVOLVEMENT OR DISARTHEROIA AND
PRESENCE OR ABSENCE OF LANGUAGE
INVOLVEMENT. OUR FIRST GROUP OF
CHILDREN WITH A DIAGNOSIS OF
CEREBRAL PALSY SHOWS US NO
EVIDENCE OF SPEECH MOTOR
INVOLVEMENT. THESE ARE CHILDREN
WE CALL NO SPEECH MOTOR
INVOLVEMENT OR NSMI. THESE ARE
CHILDREN WITH TYPICAL SPEECH AND
TYPICAL LANGUAGE ABILITIES AND
YOU CAN SEE HERE IN THIS FIGURE
THAT THESE CHILDREN COMPRISE 24%
OF OUR POPULATION. WE ALSO HAVE
CHILDREN WHO DO HAVE SPEECH
MOTOR INVOLVEMENT SO THEY HAVE
EVIDENCE OF DISARTHEROIA AND
THEY HAVE TYPICAL LANGUAGE
ABILITIES SO THEY ARE ABLE TO
UNDERSTAND LANGUAGE JUST AS WELL
AS YOU OR I. THEY COMPRISE 26%
OF THEIR POPULATION SO A GOOD
CHUNK OF CHILDREN WHO HAVE MOTOR
CONTROL APPROXIMATE AND HAVE
VERY STRONG LANGUAGE SKILLS.
SIMILARLY WE HAVE ANOTHER SUBSET
OF CHILDREN WITH SPEECH MOTOR
INVOLVEMENT BUT THEY HAVE
LANGUAGE IMPAIRMENTS SO THEY
ALSO VERY LIKELY HAVE A
CO-MORBID INTELLECTUAL
DISABILITY AND THEY HAVE TROUBLE
UNDERSTANDING ADD AT AN AGE
APPROPRIATE LEVEL SO CHILDREN
HAVE FOR SEVERE COMMUNICATION
CHALLENGE IN THE TWO DIFFERENT
FACETS OF COMMUNICATION ARE
IMPAIRED, THAT IS SPEECH,
PRODUCTION ABILITY, AND LANGUAGE
COMPREHENSION ABILITY. FINALLY
WE HAVE OUR CHILDREN WHO HAVE
INERTLYIA. SO CHILDREN UNABLE TO
PRODUCE SPEECH. SOME OF THEM ARE
UNABLE TO PRODUCE SPEECH BECAUSE
MOTOR IMPAIRMENT IS SO SEVERE,
THEY ARE NOT ABLE TO MOVE THE
MUSCLES IN THE SPEECH SYSTEM.
SOME OF THESE CHILDREN ARE NOT
ABLE TO PRODUCE SPEECH BECAUSE
THEY HAVE VERY SEVERE
INTELLECTUAL DISABILITY AND FOR
MANY OF THESE CHILDREN IT IS
VERY DIFFICULT TO DIFFERENTIATE
BETWEEN WHETHER OR NOT THE
DRIVING FEATURE OF THE INABILITY
TO PRODUCE SPEECH IS COGNITIVE
IMPAIRMENT OR MOTOR IMPAIRMENT.
SO THIS IS VERY CHALLENGING
POPULATION OF INDIVIDUALS TO
LOOK AT, THEY USUALLY HAVE GMS
--FCS LEVELS FOUR OR FIVE SO
CO-MORBID SEVERE MOTOR
IMPAIRMENT ACROSS THE WHOLE BODY
AS WELL. WE ARE NOT GOING TO BE
TALKING ABOUT THIS SUBSET OF THE
POPULATION RIGHT NOW, IT IS
ABOUT 30ISH PERCENT OF CHILDREN
WITH CEREBRAL PALSY THAT WE HAVE
BEEN SEEING. SO TODAY I WILL
TALK TO YOU ABOUT SUMMARY OF OUR
RESEARCH FINDINGS RELATED TO
SPEECH DEVELOPMENT. SO THE
QUESTIONS WE ARE LOOKING AT ARE
WHAT ARE THE RATES AND LIMITS OF
SPEECH DEVELOPMENT IN CHILDREN
WITH CP WHO ARE ABLE TO PRODUCE
SPEECH. WHEN ARE THEY GROWING
MOST RAPIDLY, HOW WELL DO EARLY
SPEECH MILESTONES PREDICT LATER
OUTCOMES, SO REALLY INTERESTING
QUESTION IS WHICH CHILDREN WILL
DEVELOP FUNCTIONAL SPEAKING
ABILITIES AND WHICH WILL NOT.
THAT IS A KEY QUESTION BECAUSE
IT WILL HELP US TO SELECT THE
BEST INTERVENTION PARTICULARLY
TO TRACK CHILDREN TO AUGUST
MENTIVE ALTERNATIVE
COMMUNICATION INTERVENTIONS WHO
WE KNOW ARE NOT FUNCTIONAL
SPEAKERS LATER ON. WE ARE ALSO
INTERESTED IN THE QUESTION OF
HOW WELL SPEECH INTELLIGIBILITY
MEASURES DIFFERENTIATE AMONG
GROUPS OF CHILDREN WITH CP. SO
CAN WE IDENTIFY SPEECH PROBLEMS
EARLIER IN CHILDREN WITH CP SO
WE CAN GET TO THESE
INTERVENTIONS MORE QUICKLY AND
EARLIER AGES. SO THERE IS A LOT
GOING ON IN THIS FIGURE HERE BUT
ESSENTIALLY TOWARD THE ANSWER TO
THE QUESTION WHAT ARE THE RATES
AN LIMITS OF SPEECH DEVELOPMENT
AND HOW DOES SPEECH
INTELLIGIBILITY DEVELOP IN
CHILDREN WITH CP? WHAT WE HAVE
FOUND OVER TIME WHEN YOU LOOK AT
THIS FIGURE, WHAT YOU CAN SEE IS
EACH LINE REPRESENTS AN
INDIVIDUAL CHILD. ON THE X AXIS
WE HAVE THEIR AGE IN MONTHS
STARTING AT 24 MONTHS AND GOING
UP TO ABOUT 96 MONTHS. ON THE Y
AXIS WE HAVE SPEECH
INTELLIGIBILITY AS MEASURED BY
UNFAMILIAR LISTENERS SO HOW MANY
WORDS UNFAMILIAR LISTENERS BE
ABLE TO UNDERSTAND AT EACH TIME
POINT FOR EACH CHILD RANGING
FROM 0 TO 100%. THESE SCATTER
PLOTS ARE SOME OF OUR MODEL DATA
RESULTS. THIS IS ALL OUR
CHILDREN ACROSS ALL THOSE
PROFILE GROUPS EXCEPT FOR THE
CHILDREN WITH ANARTHR ANARTHRIAE
CAN SEE IS THERE IS MAJOR
VARIABILITY AMONG CHILDREN WITH
CP WITH REGARD TO THEIR GROWTH
TRAJECTORIES AND THEIR OUTCOMES.
BUT ONE OF THE THINGS WE CAN SEE
VERY CLEARLY IS THAT CHILDREN
WHO REACH 50% INTELLIGIBILITY
RIGHT HERE AT EARLIER AGES HAVE
HIGHER INTELLIGIBILITY LATER ON
WHEN THEY ARE OLDER. SO THE
SOONER YOU CROSS THESE EARLY
THRESHOLDS LIKE 50%
UNDERSTANDABLE THE BETTER YOUR
OUTCOMES ARE GOING TO BE. WE
ALSO HAVE LOOKED AT WHEN
CHILDREN ARE GROWING MOST
RAPIDLY. AND WHAT WE FOUND HERE,
AGAIN, IN THIS FIGURE, THIS IS
THE PERCENTAGE OF CHILDREN ON
THE Y AXIS AND ON THE Y AXIS IS
THE AGE THEY ARE GROWING MOST
RAPIDLY. SO THIS IS ACROSS ALL
CHILDREN WITH CP. WHAT WE CAN
SEE IS THAT 36 TO 60 MONTHS IS A
CRITICAL TIME FOR GROWTH. MOST
CHILDREN WITH CP ARE GROWING
MOST RAPIDLY IN THEIR SPEECH
INTELLIGIBILITY DEVELOPMENT
BETWEEN 30 AND 60 MONTHS OF AGE.
WHAT WE KNOW ABOUT TYPICALLY
DEVELOPING CHILDREN IS THEY HIT
THIS MAXIMUM GROWTH AT MUCH
EARLIER AGES. WELL BEFORE 30
MONTHS OF AGE, LIKELY RIGHT
AROUND 24 MONTHS OF AGE SO OUR
KIDS WITH CP ARE HITTING THEIR
GROWTH, THEIR MAKE GROWTH LATER
THAN TYPICALLY DEVELOPING PEERS
LET'S PULL APART THE DATA WE
LOOK AT AND LOOK AT CHILDREN BY
PROFILE GROUPS. ON THE LEFT SIDE
WE HAVE CHILDREN WITH NO SPEECH
MOTOR IMPAIRMENT AND THIS IS
THEIR LONGITUDINAL DATA OVER
TIME. WHAT WE CAN SEE IS THE
AVERAGE INTELLIGIBILITY AT EIGHT
YEARS OF AGE IS 82% FOR THESE
KIDS WHO DON'T HAVE ANY EVIDENCE
OF SPEECH MOTOR IMPAIRMENT. WE
HAVE ALSO CONDUCTED A PARALLEL
STUDY ON TYPICALLY DEVELOPING
CHILDREN AND NOT SHOWING YOU
THOSE DATA TODAY. BUT WHAT WE
FIND IS THAT TYPICALLY
DEVELOPING CHILDREN HIT THIS
THRESHOLD AT 8 YEARS OF AGE,
THEY ARE 92% ELIGIBLE AT 8. THE
HITS, 50% INTELLIGIBILITY
THRESHOLD AT 40 MONTHS, CHILDREN
WITHOUT SPEECH MOTOR IMPAIRMENT
WHEREAS TYPICAL CHILDREN HIT AT
30 MONTHS. WE HAVE SEEN DELAYS
BUT THOSE KIDS LOOK GOOD WHO
DON'T HAVE SPEECH MOTOR
IMPAIRMENT. THOSE WHO HAVE
SPEECH MOTOR IMPAIRMENT WITH
TYPICAL LANGUAGE COMPREHENSION
ARE STRUGGLING MORE. . SO THERE
IS A LOT OF VARIABILITY AMONG
THESE CHILDREN. THEY ARE ONLY
REACHING ABOUT 71%
INTELLIGIBILITY BY EIGHT YEARS
AS A GROUP. THEY ARE 50%
INTELLIGIBILITY THRESHOLD IS
COMING QUITE A BIT LATER AT 55
MONTHS. FINALLY THOSE CHILDREN
WITH MORE IMPAIRMENT AND
LANGUAGE COMPREHENSION
INVOLVEMENT AS WELL AS SPEECH
MOTOR IMPAIRMENT ARE ONLY
REACHING INTELLIGIBILITY OF
ABOUT 42% BY EIGHT YEARS OF AGE
AND MOST OF THESE CHILDREN ARE
NEVER REACHING 50%
INTELLIGIBILITY. SO IF YOU HAVE
A CHILD WITH SPEECH MOTOR
IMPAIRMENT AND LANGUAGE
COMPREHENSION IMPAIRMENT OR
INTELLECTUAL DISABILITY IN MANY
CASES THE PROGNOSIS IS NOT
LOOKING GREAT FOR FUNCTIONAL
SPEECH DEVELOPMENT. WHAT WE KNOW
FROM THIS WORK IS
INTELLIGIBILITY AT THREE IS
HIGHLY PREDICTIVE OF
INTELLIGIBILITY AT EIGHT YEARS
OF AGE SO WHEN WE POOL ALL
CHILDREN WITH CP WE CAN SEE
PREDICTION WITH R SQUARE VALUE
OF .78. THAT IS REALLY GOOD.
WHEN WE SEPARATE INTO PROFILE
GROUPS TO FURTHER REFINE
PREDICTIONS AND ADD THE PROFILE
GROUP TO PREDICTION MODEL WHAT
WE SEE IS THAT CHILDREN,
PREDICTION MODEL IS IMPROVED AND
THREE-YEAR-OLD DATA PREDICT WITH
84%. ACCURACY, HOW WELL
CHILDREN WILL BE PERFORMING IN
TERMS OF INTELLIGIBILITY AT
EIGHT YEARS OF AGE SO PROFILE
GROUP MEMBERSHIP IMPROVES
PREDICTION. SO OUR NEXT QUESTION
IS HOW WELL DOES SPEECH
INTELLIGIBILITY MEASURES
DIFFERENTIATE AMONG GROUPS OF
CHILDREN WITH CP. SO WHAT YOU
CAN SEE HERE THESE ARE GROWTH
CURVES AND DISTRIBUTION SPEECH
INTELLIGIBILITY OF FIRST
TYPICALLY DEVELOPING FOLLOWED BY
DATA THAT I JUST SHOWED YOU ON
CHILDREN WITH CP. WHERE WE HAVE
THE CHILDREN WITHOUT SPEECH
MOTOR IMPAIRMENT IN THE MIDDLE.
AND CHILDREN WHO DO HAVE SPEECH
MOTOR IMPAIRMENT IN CHILDREN
WITH LANGUAGE IMPAIRMENT INTO
ONE GROUP TO SHOW YOU THESE
DISTRIBUTIONS. THESE ARE
PERCENTILES ON THE VERY BOTTOM,
YOU SEE THE FIFTH PERCENTILE AND
GREEN DOTTED LINE IS 50TH
PERCENTILE. SO WE LOOKED AT ROC
CURVES AND WE ARE INTERESTED IN
THE QUESTION OF HOW DIFFERENT
OUR CHILDREN NO SPEECH MOTOR
IMPAIRMENT ARE FROM CHILDREN WHO
HAVE TYPICAL DEVELOPMENT AND NO
DIAGNOSIS OF CP. WHAT WE
ESSENTIALLY FOUND WHEN WE LOOK
AT VERY BOTTOM OF TYPICAL
DEVELOPMENT AND THE VERY BOTTOM
OF CHILDREN WITH NO SPEECH MOTOR
IMPAIRMENT, THE 10TH PERCENTILE
OF EACH. THESE CHILDREN ARE
QUITE SIMILAR. SO THERE IS ABOUT
SIX MONTH LAG IN TERMS OF
INTELLIGIBILITY DEVELOPMENT FOR
THE CHILDREN WITH CP. UP THROUGH
EIGHT YEARS OF AGE BUT YOU CAN
SEE THAT THE DISTANCE IS GETTING
A LITTLE BIT SMALLER WITH TIME
SO WE DO NEED MORE DEVELOPMENTAL
DATA BEYOND AGE 8 TO FURTHER
UNDERSTAND HOW OUR CHILDREN WITH
NO SPEECH MOTOR IMPAIRMENT MAY
NORMALIZE. WHEN WE LOOK AT HOW
CHILDREN WITH NO SPEECH MOTOR
IMPAIRMENT HERE ON THE LEFT SIDE
COMPARE WITH CHILDREN WHO HAVE
SPEECH MOTOR IMPAIRMENT RELATIVE
TO EARLY DIFFERENTIATION JUICING
ROC CURVES WHAT WE SEE IS THAT
THESE DENSITY ROC CURVES SHOW US
THERE IS VERY STRONG
DIFFERENTIATION, BETWEEN THE TWO
GROUPS OF CHILDREN. SO IF ALL WE
KNOW IS A CHILD HAS A DIAGNOSIS
OF CP, WE CAN TAKE THEIR SPEECH
INTELLIGIBILITY SCORES AND BE
ABLE TO DIFFERENTIATE THEM BASED
ON THESE INTELLIGIBILITY SCORES
INTO THOSE WITH SPEECH MOTOR
IMPAIRMENT AND THOSE WITHOUT
SPEECH MOTOR IMPAIRMENT. THAT'S
VERY, VERY POWERFUL FOR
INTERVENTION. THIS
DIFFERENTIATION GETS BETTER AT
FOUR YEARS OF AGE WITH AREA
UNDER THE CURVE OF .94 BUT IT IS
VERY GOOD AT THREE YEARS OF AGE
SO THIS IS VERY POWERFUL FOR
INTERVENTION FOR THESE CHILDREN
WHAT WE KNOW ABOUT
INTELLIGIBILITY THRESHOLDS IN
TERMS OF DIFFERENTIATING
CHILDREN WITH CP WITH SPEECH
MOTOR IMPAIRMENT FROM THOSE
WITHOUT SPEECH MOTOR IMPAIRMENT
IS WE CAN CORRECTLY DETECT 90%
OF CHILDREN WITH DISARTHEROIA OR
SPEECH MOTOR IMPAIRMENT USING
THE FOLLOWING CUT POINTS. IF
YOUR INTELLIGIBILITY IS LOWER
THAN 39 PERCENT AT THREE YEARS
OF AGE YOU HAVE ABOUT 80 TO 90%
CHANCE OF DISARTHEROIAIA. IF
INTELLIGIBILITY IS LOWER THAN
59% AT 4 YEARS, 80 TO 90%
DISARTHEROIA. 76% OR LOWER AT
FIVE YEARS OF AGE, 87% OR LOWER
AT SIX YEARS OF AGE, ALL THESE
THRESHOLDS TELL US THAT A CHILD
HAS AN 80 TO 90% CHANCE OF
HAVING DISAIRILYIA. THIS BECOMES
EASY TO DIFFERENTIATE ONCE
CHILDREN ARE OLDER, I WOULD SAY
ABOVE FOUR AND A HALF YEARS OF
AGE. BUT THIS THRESHOLD FOR
YOUNGER CHILDREN IS VERY
IMPORTANT FOR BEGINNING TO GET
TO EARLY IDENTIFICATION OF
SPEECH MOTOR IMPAIRMENT AND
SEPARATING TYPICAL DEVELOPMENT
FROM ATYPICAL DEVELOPMENT. SO WE
HAVE LEARNED SOME THINGS ABOUT
SPEECH DEVELOPMENT IN CHILDREN
WITH CP, WE KNOW THAT THERE IS A
WIDE RANGE OF VARIABILITY IN
SPEECH GROWTH AND THAT GROWTH
PROFILES OF CHILDREN WITH CP
ABSOLUTELY VARY BASED ON THEIR
PROFILE GROUP MEMBERSHIP. AGO
YEAR OUTCOMES FOR CHILDREN WITH
CP ARE LOWER THAN TYPICAL PEERS
BUT HOW MUCH LOWER DEPENDS WHICH
GROUP YOU ARE IN. CHILDREN WITH
CP AS POPULATION ARE GROWING IN
THEIR SPEECH INTELLIGIBILITY
BETWEEN THREE YEARS OF AGE AND
FIVE YEARS OF AGE. EARLY SPEECH
OUTCOMES ARE PREDICTIVE OF
OUTCOME. SO CHILDREN WHO REACH
INTELLIGIBILITY EARLIER HAVE
HIGHER INTELLIGIBILITY LATER AND
INTELLIGIBILITY SCORES AT THREE
YEARS ARE HIGHLY PREDICTIVE OF
EIGHT YEARS H. SPEECH
INTELLIGIBILITY MEASURES
DIFFERENTIATE NICELY BETWEEN
GROUPS OF CHILDREN. OUR
CHILDREN WITH CP WHO HAVE NO
SPEECH MOTOR IMPAIRMENT DO LAG
BEHIND THEIR TYPICALLY
DEVELOPING PEERS. CHILDREN WITH
SPEECH MOTOR IMPAIRMENT ARE
READILY DIFFERENTIATABLE FROM
THOSE WITHOUT WHO ALSO HAVE A CP
DIAGNOSIS BY THREE YEARS OF AGE
A CUT POINT IF A CHILD WITH
DIAGNOSIS OF CP HAS
INTELLIGIBILITY BELOW 3% YEARS
OF AGE LIKELY THEY WERE SPEECH
MOTOR IMPAIRMENT AND WE SHOULD
BE THINKING SERIOUSLY ABOUT
AUGUST MENTIVETIVE AND
ALTERNATIVE COMMUNICATION
INTERVENTIONS FOR THAT CHILD. IF
A CHILD ISN'T TALKING BY FLEE
YEARS, SPEECH OUTCOMES ARE
LIKELY TO BE QUITE PRESTRICTED.
THERE'S MANY DETECTIONS
INCLUDING UNDERSTANDING
INTELLIGIBILITY DEVELOPMENT,
FOLLOWING BEYOND THAT AGE POINT
AND WE ARE WORKING ON PROCESSING
THAT DATA. EXAMINING TREATMENTS
FOR IMPROVING INTELLIGIBILITY
OUTCOMES, AND ALSO LOOKING ON
THE LOWER END TO UNDERSTAND IF
PRE-VERBAL INDICATORS OF SPEECH
IMPAIRMENT GET US TO DIAGNOSIS
SOONER AND STREAMLINING
INTERVENTIONS SOONER. BEGINNING
TO UNDERSTAND OPTIMAL TIMING FOR
INTERVENTION, WHEN CHILDREN ARE
PRIMED TO GET THE BIGGEST BOOST
FROM SPEECH THERAPY. I HAVE
WONDERFUL COLLABORATORS WHO MADE
THE WORK POSSIBLE, PARTICULARLY
PAUL RAT HOUSE INDRIS TAN MAR,
STATISTICIANS BEHIND THESE
MODELS AND DOCTORAL STUDENT
SORIANO AND HELEN LONG AND
MARIANNA AS WELL AS MANY OTHER
COLLABORATORS, IN THE WIS LAB
AND THE WESTON CENTER AND OF
COURSE WE THANK THE CHILDREN AND
FAMILIES WHO PARTICIPATED IN
THIS RESEARCH AS WELL AS TWO
GRANTS FROM THE NATIONAL
INSTITUTES OF HEALTH IN THE
NATIONAL INSTITUTE OF -- ON
DEAFNESS AND COMMUNICATION
DISORDERS AND A U 54 GRANT
AWARDED TO THE WASTEMAN CENTER
FROM NIDCD. THANK YOU FOR YOUR
FILE.
>> HELLO EVERYONE, MY NAME IS
DIANE DAMIANO, I WILL BE TALKING
TO YOU TODAY ABOUT TECHNOLOGIES
FOR ASSESSMENT AND FUNCTIONAL
RESTORATION IN CEREBRAL PALSY.
SO AS A BACKGROUND THIS RESEARCH
IS ALSO FUNDED BY NIH BUT IT IS
ACTUALLY DONE HERE IN MY
LABORATORY AT NIH. WHERE WE
COMBINE BIOMECHANICS
NEUROSCIENCE AN NEUROENGINEERING
PRINCIPLES WITH PRY PLAYER GOAL
IMPROVING MOBILITY IN CHILDREN
WITH CEREBRAL PALSY. MUCH PRIOR
RESEARCH PHYSICAL THERAPIST BY
BACKGROUND HAS BEEN ON MUSCLE
STRENGTHENING AND ACTIVITY BASED
TRAINING IN CP BUT MORE RECENT
WILL I INTERESTED IN DOING
RESEARCH IN EMERGING
TECHNOLOGIES SUCH AS MOBILE
BRAIN IMAGING AND FEEDBACK AND
REHABILITATION ROBOTICS. THE
RATIONALE FOR USE OF
TECHNOLOGIES IN CP IS THAT CP IS
A GROUP OF MANY DISORDERS FROM
FROM EARLY BRAIN INSULTS THAT
VARY IN TYPE LOCATION EXTENT AND
TIMING OF INJURY. AS YOU KNOW
THE BRAIN MECHANISMS UNDERLINE
MOVEMENT DISORDERS IN CP REMAIN
POORLY UNDERSTOOD DESPITE MRI
DTI ADVANCES. WE KNOW THE
TREATMENT OUTCOMES EVEN FROM
BEST INTERVENTIONS ARE MODEST SO
WE NEED BETTER INTERVENTIONS AND
WE BELIEVE TECHNOLOGY CAN
GREATLY ENHANCE UNDERSTANDING
AND OUTCOMES. SO THE TWO BRAIN
IMAGING TECHNOLOGIES TALKING
ABOUT ARE ELECTROENCEPHALOGRAPHY
AND EEG AND FUNCTIONAL
SPECTROSCOPY. THESE ARE PART OF
NEW FIELD CALLED MOBILE BRAIN
BODY IMAGING MEASURING THE BRAIN
AND BODY AND SECOND EEG IS
OLDEST, FUNCTIONAL IMMANAGING
TECHNIQUE, AND THE IMPORTANCE IS
WE HAVE FOUND 50% OF THOSE WITH
CP CANNOT DO F -- MANY CHILDREN
CAN'T BE STUDIED. ALSO THE MRI
YOU CAN ONLY DO SIMPLE MOVEMENTS
AND THESE TECHNOLOGIES ALLOW THE
STUDY OF WHOLE BODY MOVEMENTS IN
NATURALISTIC BUT EACH HAS ITS
OWN UNIQUE STRENGTH AND
WEAKNESSES, THIS PICTURE SHOWS
SOMEONE ON TREADMILL WITH
NEAREST DATA ENTERLAP. IF YOU
COMPARE EEG THEY STACK UP WELL
AS FAR AS FACIAL AND TEMPORAL
RESOLUTION. THEY CERTAINLY DON'T
HOLD UP AS WELL AS IMPLANTED
ELECTRODES BUT COMPARE TO FMRI
THEY DO WELL WITH EEG HAVING
EXQUISITE TEMPORAL RESOLUTION.
WHAT IS F MERE?
IT IS LASER LIKE SHOWN THROUGH
SCAFFOLD SEEN IN THIS MODEL HERE
WE MADE IN OUR LAB. AND THEN
RECEIVED BY DETECTORS, AND MOST
PEOPLE ONLY LEADS TO CORTICAL
CIRCUS THAT FOR EXAMPLE SMALLER
HEADS OR THINNER SCALPS LIKE
BABIES YOU CAN GO DEEPER. THIS
IS POSSIBLE BECAUSE THERE IS
OPTICAL WINDOW FROM SCAN TISSUE
AND BONE ARE TRANSPARENT IN
INFRARED LIGHT. THIS IS A
SPECTRUM WE USE IN MERES WHILE
HEMOGLOBIN AND DEOXIHEMOGLOBIN
ARE ABSORBERS DIFFERENT
WAVELENGTH SO WE CAN DISTINGUISH
THE TWO. OPTICAL INTENSITY IS
COMPARED TO HEMOGLOBIN
CONCENTRATION. THE GOOD THING
ABOUT MERES FOR FMRIS BASED ON
THE SAME PRINCIPLE AS
NEUROVASCULAR COUPLING WITH A
BOLD RESPONSE AND THE SIGNAL OR
THE HBO ABSORPTION IS MORE
INTENSE WHEN BRAIN IS ACTIVATED
YOU CAN SO E THIS IS THE PATH
THAT THAT LIGHT WILL TAKE CALLED
A BANANA SHAPE PATH THAT GOES
WITH CORTICAL SURFACE. WE USE A
SYSTEM CALLED THE INTERNATIONAL
1020 SYSTEM SHOWN ON THE LEFT,
BOTH EEG AND MERE MS. BASED ON
ANATOMIC LAND MARKS WHERE YOU
PLACE THE CAP CENTER ON TOP OF
THE HEAD. THIS IS WHAT WE USE
FOR F MERE IT IS HOLD HEAD OR
EEG. IF YOU ARE LOOKING AT ONE
SOURCE WHAT YOU WOULD SEE DURING
TASK IS PICTURE ON THE RIGHT
WHERE THIS IS THE SHADED PART
WHERE THE TASK IS OCCURRING
WITHIN A SECOND OR TWO AFTER THE
TASK START YOU SEE INCREASE IN
HEMOGLOBIN SHOWN IN RED,
DECREASE IN DEOXIHEMOGLOBIN AND
ADD THESE TWO YOU GET IN THE
GREEN TOTAL HEMOGLOBIN. AS
THINGS ARE MORE SOPHISTICATED
OVER THE YEARS YOU CAN GET NICE
RESOLUTION MAPS AND WHERE THEY
ARE LOCATED ON THE CORTICAL
SURFACE. SO JUST TO SHOW YOU ONE
OF OUR EXPERIENCE --
EXPERIMENTS, THIS IS LOOKING AT
DORSAL FLEXION AND THE PERSON
HERE WITH ANKLE EXTENDED SO YOU
CAN SEE THIS HANDICAP ON THEIR
HEAD, THE REASON FOR THAT IS WE
HAVE INFRARED CAMERAS IN OUR LAB
AND THESE INTERFERE WITH MERES
SO WE HAVE TO COVER THE ED HEAD
WE USE A BLOCK DESIGN AND HERE
THIS PERSON WOULD BE DOING EIGHT
WALKS AT ONE HERTZ PACE SO THEY
20 SECONDS MOVE REPETITIVELY
THEN REST FOR VARIABLE REST
PERIOD SO THEY DO NOT ANTICIPATE
THE NEXT BLOCK. THIS SHOWS OUR
RED LIGHTS ARE THE LIGHT
SOURCES, DETECTORS, THIS IS OUR
PROBE DESIGN AND THIS IS HOW IT
LOOKS PLACED ON THE HEAD. SO
THESE ARE DATA THAT WE COLLECTED
IN GROUP WITH CHILDREN WITH
CEREBRAL PALSY BY (INAUDIBLE)
POST DOC IN MY LAB. THIS IS
LOOKING AT DORSAL FLEXION IN
CHILDREN WITH AND WITHOUT
BILATERAL CP. WHAT YOU SEE HERE,
WE ARE LOOKING AT LEFT
DORSOFLEXION SO YOU ACT VISION
ON RIGHT SIDE SHOWN HERE, RED
WOULD BE SIGNIFICANT ACTIVATION,
BLUE WOULD BE SIGNIFICANT
INHIBITION. WITH WE ARE
STARTING CHILDREN WITH TYPICAL
DEVELOPMENT ON FAR LEFT. WHAT
YOU CAN SEE HERE YOU DON'T SEE
ANYTHING ON THE RIGHT BUT YOU
SEE SOME INHIBITION ON THE
OPPOSITE SIDE. AND WHAT WE ARE
SEEING IN A LOT OF HEALTHY
INDIVIDUALS IS A LOT MORE
INHIBITION FOR MORE SIGNAL. IF
YOU LOOK AT CHILDREN WITH CP AND
GF -- YOU SEE SOMEK ACTIVATION
ON THE RIGHT SIDE OF THE BRAIN,
BOTH SIMILAR. BUT CHANGES
DRAMATICALLY WHEN YOU GET GMSCS
LEVEL 3 YOU SEE NOT JUST
ACTIVATION ON THE RIGHT BUT
ACTIVATION IN THE WHOLE SENSORY
MOTOR AREA, AT A VERY HIGH LEVEL
DOING THE TASK. THESE RESULTS
WE LOOK AT MULTIPLE TESTS IN
THESE CHILDREN AND SEE SIMILAR
DATA. THIS MEANS WHAT WE KNOW
HERE IS THIS ORGANIZATION IN
CHILDREN WITH GMFCS 3 IS
DRAMATICALLY DISTURBED. WE ALSO
LOOK AT THE NUMBER OF MUSCLES
ACTIVE WHEN TRYING TO DO A TASK
BUT ONLY BE LIMITED MUSCLE SET.
RIGHT? BUT YOU SEE HERE SOMEONE
WITH CP TRYING TO DO IT MOVING
KNEE ON THAT SIDE AND OTHER
SIDE. WE CORRELATED THAT WITH
IN GRAY F NEARS CHANNEL, WHAT
YOU CAN SEE HERE IS THE NUMBER
OF MUSCLES CORRELATES WITH
NUMBER OF CHANNELS ACTIVE AS YOU
GO UP GMFCS LEVEL. THIS SHOWS
MUSCLE EFFORT IS RELATED TO
BRAIN EFFORT AND FUNCTION.
SWITCHING TO EEG, LOOKING AT
ELECTRICAL CHEMICAL ACTIVITY, IT
IT HAS TO HAVE TENS OF THOUSANDS
OF NEURONS AT SURFACE OF SCALP
TO SHOW ACTIVITY. WHAT WE THINK
IS THESE ORIGINATE ELECTRICAL
ACTIVITY DENDRITES IN THE CORTEX
AND AS I SAID HAS SKI EXQUISITE
TEMPORAL RESOLUTION. SO LOOK FOR
SPATIAL RESOLUTION. THESE ARE
VERY NOISY SIGNALS. SO WE REALLY
NEED MANY TRIALS OR SUBJECTS TO
EXTRACT WHAT WE ARE LOOKING AT
AS A VENT RELATED POTENTIAL
ERPs. SO THIS IS A CHILD THAT
HAS OF THAT HAS EEG TAG LINE
WHAT YOU SEE HERE IS SEIZURE
ACTIVITY WHICH IS EASILY
DISTINGUISHABLE FOR EEG BUT
THESE ARE DATA WAY SEE DURING
THE TASK AND YOU CAN APPRECIATE.
THE INTERESTING THING ABOUT EEG
IS IT RECORDS ACTIVITY IN
DIFFERENT FREQUENCIES EACH
FREQUENCY BAND MEANS SOMETHING
DIFFERENT. THE BRAIN IS
OSCILLATING IN ALL THESE --
PEOPLE CALL THIS BRAIN MUSIC
THAT IS LIKE A SIMILAR PHONY
THAT TAKE IT IS FREQUENCIES AN
PUTS THEM TOGETHER INA BEAUTIFUL
MOVEMENT REPERTOI REPERTOIRE. WE
KNOW IS AMPLITUDE IS HIGHER AND
FREQUENCY LOWER. WHEN THE BRAIN
IS LESS ACTIVE. THESE ARE DELTA
WAVES LESS THAN 4 HERTZ, SLOW
WAVE SLEEP DATA WAVE WHENCE YOU
ARE I WAKE BUT DROWSY. ONE MOST
INTERESTED IN, OR TWO TWO IS THE
ALPHA, WHICH IS THE FIRST ONE
RECOGNIZED AND THE MOTOR REGION
IT IS CALLED THE MU RHYTHM
AROUND 8 TO 12 HERTZ. THIS
INTERESTINGLY WILL DECREASE IF
YOU GO TO MOVE SO THE BASICALLY
THAT OSCILLATION BECOMES
DECOUPLED. THE DATA TENDS TO
REPRESENT MORE ACTIVE THINKING
OR SENSORY MOTOR INTEGRATION
THAT IS AT HIGHER FREQUENCY.
THE DATA ADVANCE AND EEG USED
FOR FUNCTIONAL IMAGING WAS
INDEPENDENT COMPONENT ANALYSIS
DEVELOPED BY EEG LAB PEOPLE, IN
SAN DIEGO. SO THEY TOOK THIS
NOISY SIGNAL AND LOOK AT THE
COMPONENTS HERE, SOME OF THESE
ARE BRAIN COMPONENTS, THESE
RELATIVE WHERE IT WOULD BE. BUT
LIKE THIS ONE WOULD BE AN EYE
BLINK SO YOU CAN START STATE
SEPARATING OUT WHAT YOUR BRAIN
SOURCES AND WHICH ARE WE ARE E
MANYMG OR SOMETHING DIFFERE DIF.
SO IF YOU LOOK AT THIS WE GET A
POWER SPECTRAL ANALYSIS AND HERE
IS FREQUENCY ON ONE SIDE OVER
TIME. THE FIRST LINE YOU SEE
DOTTED LINE WHEN THE REACH
BEGINS. WHAT YOU SEE IN MANY THE
MU BAND IN THIS REGION HERE IS A
VERY STRONG DESYNCHRONIZATION,
STARTS JUST BEFORE THE TASK
PERSON ANTICIPATING OR
PERFORMING PLANNING THE TASK YOU
ALSO SEE A NICE SIMILAR BAND IN
THE BETA. WE DID STUDY ON
HEALTHY ADULTS FIRST WITH EEG TO
LOOK AT ACTIVATION DURING THE
TREADMILL WALKING. WHAT WE FOUND
HERE IS IN TEN ADULTS WE FOUND
FOUR BRAIN REGIONS PRIMARILY
ACTIVATED IN THE SCREEN, ON THIS
MAP YOU CAN REGISTER THESE DATA
TO THAT LIST, WHAT YOU SEE HERE
ARE THE DIFFERENT BRAIN REGIONS.
SO RED WOULD BE PREFRONTAL
CORTEX, THIS WOULD BE THE PEOPLE
THAT WILL HAD ACTIVATION IN
ANTERIOR CINGULATE. THIS IS
SENSORY MOTOR AREAS AND
POSTERIOR PARIETAL. WHAT WE WERE
ABLE TO DO WITH DATA IS LOOK AT
REAL TIME ACTIVATION WITH
SENSORY MOTOR AREAS. SO EACH
CIRCUMSTANCE SYSTEM WOULD BE AT
LEAST NEURONS THE BIGGER THE
CIRCLE THE MORE ACTIVATION. AND
THEN WE ARE SEEING REAL TIME
CONNECTIVITY, IN THOSE REGIONS.
SYNCHRONIZE PRECISELY WITH THE
CYCLE. WE HAVE ALSO NOW LOOKED
AT THE EEG DURING TREADMILL
WALKING IN CEREBRAL PALSY. IN
THIS STUDY WE HAD NINE WITH CP
TEN WITH TYPICAL DEVELOPING,
TYPICAL DEVELOPMENT, AND THEY
WERE APPROXIMATELY 15 YEARS OF
AGE. WE FOUND CHILDREN WITH CP
HAD LOWER RESTING POWER BUT THEY
HAD SIMILAR TASKS RELATED
CHANGES BUT WE THINK THIS MAY
DIFFER WITH CHILDREN WITH
GREATER INVOLVEMENT. WHAT WE DID
SEE IS THEY HAD A LOWER PEAK MU
FREQUENCY. THE REASON THIS IS
INTERESTING IS THAT A MU
FREQUENCY IS VERY SLOW IN BABIES
AROUND 4 TO 8 HERTZ BUT
INCREASING RAPIDLY IN FIRST
YEARS AND THEN MORE SLOWLY, THIS
IS ON CORTICAL MATURATION. SO
WHAT WE SAW HERE IN THE GROUP
WITH CP, THEIR FREQUENCY WAS
LOWER IN DOMINANT AND
NON-DOMINANT HEM FEAR SUGGESTING
ABOUT ABNORMALITY OR IMMATURE
CLINICAL MATURATION. WE CAN DO
SAME THING WITH HEALTHY ADULTS
IN CHILDREN WITH CP. YOU SEE
PATTERNS OF TWO DIFFERENT
CHILDREN WHERE THIS CHILD IS
STILL VERY MUCH BILATERAL
ACTIVATION, THIS CHILD HAS
UNILATERAL ACTIVATION FOR
WALKING WHICH IS LATERAL TASK.
THESE WERE VIRTUALLY
INDISTINGUISHABLE FROM GMSCS 1
AND WHAT WE LEARN FROM THIS,
THIS IS AN ARTICLE LOOKING AT
THESE DIFFERENT MODALITIES IS
THAT EACH CHILD WITH CP HAS
THEIR OWN UNIQUE NEUROANATOMICAL
AND PHYSIOLOGICAL PROFILE AND
MORE WITH BRAIN INJURY. WE ARE
STARTING OUR STUDY THAT WE
STARTED BEFORE THE PANDEMIC
LOOKING AT EARLY MOTOR
DEVELOPMENT LOOKING AT INFANTS,
AS YOUNG AS THREE TO FIVE
MONTHS. LOOKING AT REACHING AND
WALKING. WE HAVE GOTTEN SOME
REALLY EXCITING DATA IN YOUNG
INFANTS, THIS IS A 12 MONTHS OLD
INFANT. WHILE THEY ARE TAKING A
STEP. YOU SEE HERE MU TESSIE
IONIZATION BETA
DESYNCHRONIZATION. THE FREQUENCY
IS LOW LIKE LOW IN THE 4 TO 10
HERTZ RANGE. WE ARE LOOKING AT
EEG NEUROFEEDBACK NOW TO
STRENGTHEN MOTOR PATHWAYS. THIS
EVOLVEED FROM THE BRAIN COMPUTER
INTERFACE FIELD, WHERE YOU
HARNESS BRAIN SIGNALS TO
ACTIVATE DEVICES MOSTLY USING
MOTOR IMAGERY, IF YOU GO TO
REHAB ROOM MOST STUDIES PUBLISH
REDIRECT EXAMINATION IN STROKE,
ONLY HANDFUL CP AND RESULTS ARE
INCONSISTENT BUT SOME VERY
PROMISING. WE FROM OUR READ OF
THE LITERATURE EFFECTIVE
PARADIGMS OR DETECT BRAIN
SIGNATURE SIGNAL REAL TIME
DURING MOTOR EVENT USE SIGNAL TO
ACTIVATE ASSISTIVE DEVICE WHILE
MOVING FES OR ROBOT. AND THEN
THE PERSON GETS FEEDBACK ON
PERFORMANCE AND WE ARE STARTING
THIS TRIAL LOOKING AT DORSAL
FLEXION IN CHILDREN WITH CP.
THIS IS OUR SET UP HERE, THIS IS
LOOKING AT TRYING TO IDENTIFY
WHICH IC IS MOST ACTIVE TO USE.
WHEN THE PERSON GOES TO MOVE TO
ACTIVATE FES AND THE PERSON GETS
TO SEE ANKLE MOTION TO GIVE
FEEDBACK ON PERFORMANCE. QUICKLY
I WANT TO TALK ABOUT THE OTHER
TECHNOLOGIES. THIS IS THE
ROBOTS WE DESIGNED IN OUR LAB
FIRST PROUD TO GATE CALLED THE
PREX. IT IS A MOTOR HERE AT THE
KNEE JOINT YOU CAN SWAP THIS OUT
OR USE TOGETHER WITH FES AND
CUSTOM OR NOTTIC. THE BIG
DIFFERENCE ANT THIS DEVOICE IS
IT IS CONTROL, VERY DIFFERENT
THAN IF YOU THINK ABOUT MOST OF
THE OTHER ROBOTS OUT THERE WHERE
THEY ARE ACTUALLY CONTROLLING
THE KNEE TRAJECTORY OR JOINT
TRAJECTORY. I WILL EXPLAIN WHY
THIS IS SO UNIQUE. SO USE
POSITION CONTROLLED DEVICE LIKE
LOCOMAT YOU ARE GETTING SOME
FORM OF CONTINUOUS ASSISTANCE,
FOR CHILDREN WITH CP THE KNEE
ALIGNMENT CAN BE DIFFICULT
BECAUSE IT IS VELOCITY AND
POSITION DEPENDENT, CAN LEAD TO
SLACKING WHERE THE DESIZE VICE
TAKES OVER, IT CONTROLS
TRAJECTORY, IT CAN ENFORCE THE
CERTAIN -- IT DOESN'T ENS FOR
THE TRAJECTORY, IT DOESN'T LET
THE PERSON DECIDE THIS
THEMSELVES. THE VALUE, FOR
EXAMPLE SPINAL CORD OR PATIENTS
WITH CEP WHO DON'T HAVE THE
STRENGTH TO BE ABLE THE REHAB
AND GET BETTER AT WALKING
PERFORMANCE. IN CONTRAST
INTERMITTENT ASSISTANCE AND ONLY
HELPS SOMEONE NEEDED. NO KNEE
ALIGNMENT ISSUES, IT IS LESS
LIKELY THOUGH IT CAN CAUSE A
RESPONSE WE CAN CONTROL
VELOCITY, THE PERSON HAS TO
EXERT MORE FORCE TO REMAIN
UPRIGHT AND INTEGRATE WITH
VOLUNTARY CONTROLLING. IT
DOESN'T ENCODE DIFFERENT CONTROL
THERE. THIS REQUIRES ABILITY TO
STAND AND MAINTAIN SUPPORT. THIS
IS A YOUNG CHILD WITH MILD --
ONE OF THE FIRST TO USE OUR
FIRST PROTOTYPE, THIS IS HIM
BEFORE CROUCHED MORE ON THE
LEFT, DRAGGINGSING HIS TOES AN
NOW YOU WILL SEE HIM WITH THE
DEVICE AND HE IS MORE UPRIGHT
GETTING STRAIGHT MOST OF THE
TIME. THIS IS THE PREVIOUS
DEVICE THAT WAS COUPLE BEARSOME
NOW EVERYTHING IS EMBEDDED
SEAMLESSLY ON THE DEVICE ITSELF
SO FINAL THOUGHTS WE ARE ALL
AWARE WE HAVE OUTCOMES, STILL
MODEST AND ENGINEERING
TECHNOLOGY HAS THE CAPACITY TO
ALER THIS PROGRESS KNOWSIS. WE
BELIEVE REAL TIME BRAIN IMAGING
HELP DESIGN BETTER PERSONALIZED
INTERVENTIONS AND MAY ALSO BE
INTERVENTIONS IN AND OF
THEMSELVES. ROBOTICS ARE
ASSISTIVE REHABILITATIVE CAN
TRANSFORM CAPABILITIES
PARTICIPATION EVERY DAY LIFE,
AND WE NEED TO DEVELOP MORE
PERSONALIZED PROBOTS THAT
INTEGRATE SEAMLESSLY WITH
VOLUNTARY CONTROL.
>> MY NAME IS MARK PETERSON ON
FACULTY UNIVERSITY OF MICHIGAN
MEDICINE DEPARTMENT OF MEDICAL
MEDICINE AND REHABILITATION. I
WILL TALK ABOUT UNDERSTANDING
THE HEALTHCARE NEEDS OF FOR
ADULTS WITH CEREBRAL PALSY. SO
WE ARE EXPERIENCING TWO MAJOR
DEMOGRAPHICS TRENDS IN THE
UNITED STATES, AS WELL AS
SOCIETY WHICH NUMBER OF ADULTS
GROW OVER 65 YEARS OF AGE IS
GROWING SIGNIFICANTLY. OBVIOUSLY
WITH KNOW WITH AGE THERE IS
INCREASE RISK FOR FRAILTY
PHYSICAL DYSFUNCTION, MOBILITY
DISABILITY CHRONIC DISEASE RISK
CARDIOVASCULAR DISEASE RISK
MORTALITY AND ALL CAUSE MORT.
TODAY WE ARE TALKING CEREBRAL
PALSY, IT IS RARE THAT WE HAVE
THE LUXURY TO BE ABLE THE TALK
ESPECIALLY NATIONAL FORUM ABOUT
AGING WITH CEREBRAL PALSY. BUT
AS EVERYBODY HERE KNOWS CP IS
THE MOST COMMON PEDIATRIC ONSET
OF PHYSICAL DISABILITY WITH
ESTIMATED PREF RENNES RANGING
FROM AROUND 2 B. CXFC 6 TO 3.1
CASES PER 1,000 LIVE BIRTHS.
MANY INDIVIDUALS WITH CP EXPECT
NORMAL LIFE EXPECTANCY BUT THERE
IS GENERALLY LACK OF FOLLOW-UP
ESPECIALLY CLINICALLY WITH
REGARD TO COORDINATION OF CARE,
ESPECIALLY AS TRANSITION FROM
PEDIATRIC TO ADULT PRIMARY CARE
SOS THE LAST DECADE OR SO CORPUS
OF MY WORK HAS BEEN TO TRY TO
UNDERSTAND THE NATURAL HISTORY
OF CEREBRAL PALSY. ORIGIN FAMILY
STARTED TO STUDY GO TO THE
INTERSECTION BETWEEN AGING AND
OBESITY IN THIS POPULATION. THE
DUAL PATHOLOGY THAT HAPPENS AT
THE MUSCULOSKELETAL SYSTEM BUT
ALSO CARDIOVASCULAR METABOLIC
SYSTEM AND OBVIOUSLY THERE'S
SIGNIFICANT GROWTH WORLDWIDE
ACROSS ORGAN SYSTEMS. I WILL BE
TALKING MORE ABOUT THE WORK THAT
WE HAVE DONE HERE AT THE
UNIVERSITY OF MICHIGAN. SO WHAT
HAPPENS TO CHILDREN ADOLESCENTS
AND YOUNG ADULTS WITH CP
TRANSITION FROM, BURNING
QUESTION THAT I HAVE THAT IS
FRAMED MY CAREER. OF NOTE THERE
ARE MORE ADULTS LIVING WITH
CEREBRAL PALSY IN THE UNITED
STATES THAN THERE ARE CHILDREN
WITH CP. SO I THINK IT IS
IMPORTANT THAT WE ACKNOWLEDGE
THE FACT THAT LIFE SPAN IS THE
MAJOR ISSUE, MAJOR IMPORTANT FOR
RESEARCH POPULATION. SOME OF THE
TARGET especially clinically is
folks with CP experience
accelerated aging, premature
frailty, they have normal weight
obesity so risk for being normal
weight but high fat stores. They
have consume extremely high
sedentary volumes of behavior.
One first study we did here
trying to understand the
morphological risk factors
associated with being adult with
CP with -- to take a look at
muscle and fat density and
volumes in adults with CP.
Without going to details but
using computer tomography we
look at imaging from the
abdominal region of adults with
CP matched to adults without CP.
You can see here the L 4 level
lumbar 4 level in adults with --
without cerebral palsy masked to
adults with CP. These are not
overweight individuals but
40-year-old male CP with 6
kilograms of body mask, all
adults, significantly greater
adiposity not just in the
subcutaneous but and back but
subcutaneous depot but
interabdominal or visceral depot
as seen in the darker shaded
area. What is obvious density of
the muscle as well as
(inaudible) was significantly
lower in the adult with CP than
matched controls. That was the
case also for bone but for the
first time we have shown that
adipose tissue within muscle
even in the trunk musculature is
significantly worse and
certainly there's risk
associated with having visceral
adiposity at this level. So that
lid us to follow-up in try to
ask the question, given loss of
absence in lean muscle mass,
muscle and bone, increase
storage of visceral adiposity,
as well as muscular adipose
tissue, is increase risk of
chronic disease in CP, at this
time there were no studies to
look at health outcomes and
non-communicable disease, in
this population. So I was very
committed to trying to
understand that and we published
in 2015 a paper in JAMA which
used medical expenditure panel
survey and very descriptive
study, very much cross sectional
prevalence study look at fairly
large 2000 adults with CP. Using
diagnostic to identify cohort
with and without CP. You can see
in blue versus yellow, adults
with CP had between two and five
fold increase risk of are having
chronic disease across organ
systems look at diabetes,
asthma, hypertension, heart
problems, stroke emphysema and
joint pain arthritis. We wanted
to explore more context of
longitudesnal outcomes so able
to put together a cohort of
individuals with CP who are
ensured and look a age related
he will effects of CP on
cardiometabolic disease. In
three years of continuous
enrollment in a fairly large
cohort of 2600 adults with CP,
found cumulative events of
cardiometabolic range from
64.4%, and you can see the range
across different conditions but
importantly we found the three
plus year cumulative incidence,
hypercholesterolemia, were
similar to lifetime risks in
otherwise healthy non-CP general
population. So for the first
time it starts to become obvious
that adults with CP have risk
for chronic disease but
especially for things that may
lead to cardiovascular disease
risk. The term early aging
seems to be around but describe
phenotype of CP, so we did a
study by Dr. Daniel to look at
non-communicable diseases and
multi-morbidity in young adults
with CP, was we thought if we
can look at we can't exactly
study age acceleration in this
population but not at this point
but look at non-communicable
disease in young adults we may
have some assertiveness and
definitive evidence that adults
with CP maybe at risk for
chronic disease early where
life. Using a fairly large
cohort of adults here at the
University of Michigan, clinical
cohort, we looked at 18 to
30-year-olds. Examined evidence
basically of having perfectly
healthy, which is a morbidity
score of zero, and then out to
having some disease, these are
chronic diseases across host of
non-communicable disease and
organ systems so morbidity score
of one, two, three and four or
more. What we found was that
young adults without CP high
prevalence of being healthy into
much less extend 68% versus 35%
adults with CP young adults with
CP less likely to be healthy
this the clinical cohort we
assembled. Many the light shaded
gray bar are adults with CP
ambulatory or higher function,
1, 2, 3s AND LOWER FUNCTIONING
4 AND 5s. SO WHAT YOU CAN SEE
IS VERY OBVIOUS BY THE BAR CHART
AND THE MORBIDITY SCORE GOES UP
AND FOR FOLKS WITH CP THEY HAVE
HIGHER RISK OF HAVING ONE, TWO,
THREE OR FOUR AND MORE MORBIDITY
AMONG 18-30-YEAR-OLDS. SO SINCE
THEN WE HAVE STUDIED VIRTUALLY
EVERY ORGAN SEASONAL SPANNING
MUSCULOSKELETAL TO MENTAL HEALTH
KIDNEY DISEASE DONE TREMENDOUS
WORK ON THAT, CIRCULATORY
DISEASE AND BASICALLY WHAT WE
HAVE FOUND IS THAT TO IT SOUNDS
BAD, THERE SEEMS TO BE ROBUST
EVIDENCE THAT ADULTS WITH CP
EXPERIENCE EARLY AND
SIGNIFICANTLY GREATER RISK FOR
NON-COMMUNICABLE DISEASE.
THE GOOD NEWS IS IS THAT E WE
DON'T HAVE TIME TO TALK ABOUT
THE THIS TODAY BUT THERE IS A
SIGNIFICANT EFFECT FOR EXERCISE
AND REDUCING SEDENTARY BEHAVIOR
ACROSS POPULATIONS NOT JUST CP.
SO LOTS OF POPULATIONS
IDENTIFYING HEALTHY BEHAVIORAL
STRATEGIES TO INTERVENE, IMPROVE
PHYSICAL ACTIVITY, SLEEP,
IMPROVE HEALTHY EATING AND
NUTRITIONAL HABITS AND REDUCE
STRESS, TO COMBAT OR FORE STALL
A LOT OF CONDITIONS. IN ADULT
CHILDREN: AND SO BASICALLY WHAT
WE STARTED TO ASK IS IS THERE
INCREASE RISK FOR MENTAL HEALTH
DISORDERS IN ADULTS WITH CP AND
WHAT EXTENT PAIN A CONTRIBUTING
FACTOR TO THOSE. SO HIGHLIGHT
SOME OF MORE RECENT PAPERS. ONE
STUDY WAS IN COLLABORATION WITH
DR. JENNIFER RYAN AND KIMBERLY
SMITH IN UK USING UK GP DATA
EXAMINE RISK OF DEVELOPING
DEPRESSION AN ANXIETY IN ADULTS
WITH CP IN THE UK. SO IN FAIRLY
LARGE COHORT CP MATCHED TO
ADULTS WITHOUT CP IN UK, WE LOOK
AT COMPARING INCIDENCE OF
DEPRESSION ANXIETY, WITH AGE SEX
AND PRACTICE MATCH REFERENCE
GROUP. WE FOUND FOR BOTH ANXIETY
DEPRESSION HAVING CEREBRAL PALSY
INNED THE RISK FOR DEVELOPING
DEPRESSION AND ANXIETY EVEN
AFTER ADJUSTING FOR
PRE-AGGRESSION, ANXIETY,
DIAGNOSIS OF DIABETES, LUNG
DISEASE, OSTEOARTHRITIS,
EPILEPSY AND PAIN. WHAT WE THEN
SAID SECONDARY FINDING WHICH IS
IMPORTANT AS FIRST STUDY TO LOOK
AT DEPRESSION ANXIETY IN CP IN
ADULTS WE FOUND HAVING CEREBRAL
PALSY IN IN NO CO-MORBID
INTELLECTUAL DISABILITY SO FOLKS
WITH CP WHO HAD NO CO-OCCURRING
INTELLECTUAL DISABILITY AT
HIGHER RISK OF INCIDENT
DEPRESSION ANXIETY AND MATCHED
CONTROLS. LED BY DAN WHITNEY WE
RECOLLATED THIS STUDY HERE IN
THE UNITED STATES PUBLISHED
COUPLE OF YEARS AGO IN A FAIRLY
LARGE COHORT BUT WANTED TO
EXPAND SELECTION OF VARIABLES SO
PREVALENCE OF MENTAL HEALTH
DISORDERS COMPARED WITH CP
COPIED TO ADULTS WITHOUT C, P.
YOU CAN SEE THE DIFFERENT
CATEGORIES OF PSYCHIATRIC
DISORDERS THAT WE LOOKED AT.
WHAT WE FOUND WAS THAT ADULT FOR
MEN AND WOMEN ADULTS WITH CP
ALONE HAD MUCH HIGHER RISK OF
DEVELOPING ALL OF THE
PREVALENCE, ALL THE PSYCHIATRIC
AN PSYCHOLOGICAL DISORDERS, BUT
INTERESTINGLY AND DISPARATE FROM
THE PREVIOUS STUDY WE FOUND
ADULTS WITH CP FOR MEN AND WOMEN
WHO HAD CO-OCCURRING
NEURODEVELOPMENTAL CONDITIONS,
WHICH COULD HAVE INCLUDED AUT
AUTISM, EPILEPSY OR OTHER
INTELLECTUAL DISORDERS HAD
INCREASE RISK FOR COMING
PSYCHIATRIC MORBIDITIES SO HERE
IN THE UNITED STATES FOLKS WITH
CP AND OKAY CO-OCCURRING
CONDITIONS AT RISK FOR
DEVELOPING MENTAL HEALTH
DISORDERS SIGNIFICANTLY GREATER
THAN ADULTS WITHOUT CP. THIRD
STUDY WE COMBINED COHORT OF
ADULTS WITH CP AND SPINA BIFIDA
LOOK AT INCIDENCE, PSYCHOLOGICAL
MORBIDITY AND FOUND THAT ACROSS
A GREAT NUMBER OF PSYCHOLOGICAL
DISORDERS ADULTS WITH CP OR
SPINA BIFIDA AFTER ADJUSTING
BASICALLY ADJUST FOR HAD HIGHER
RISK TO DEVELOPING THESE ARE
DISEASE FREE SURVIVAL OR
INCIDENCE OF THESE OUTCOMES.
AFTER ANYBODY WITH THE
CONDITIONS AT BASELINE ON
INSURED BENEFICIARY CLAIM. SO
INTERESTING FINDINGS AND ARE
EXTREMELY IMPORTANT IN THE
CONTEXT OF TRYING TO EARLY
SCREEN FOR MENTAL HEALTH
DISORDERS. AND PROBABLY EVEN IN
CHILDHOOD FOR THIS POPULATION.
SO GIVEN PAIN IS ASSOCIATED WITH
CHRONIC DISEASE, INCLUDING
MUSCULOSKELETAL DISORDERS AND
PSYCHOLOGIC MORBIDITY WE WANTED
TO UNDERSTAND WHAT THE PHENOTYPE
WAS IN CP AND ALSO WITH NATIONAL
PRESCRIBING PATTERN FOR OPIOIDS
ARE. SO WE DID STUDY AT PAIN
TAXONOMY FOR THOSE IN THE
AUDIENCE NOT STUDY PAIN, THIS
WAS AN EXTENSION OF MY AREA OF
EXPERTISE TOO. PREVIOUS STUDIES
RELY ON IN SPECIFICALLY DEVOTED
TIME TO UNDERSTANDING
NOCICEPTIVE PAIN IN THIS
POPULATION SO THAT IS PERIPHERAL
PAIN OR MUSCULOSKELETAL PAIN
THAT ARISE FROM FISCAL DAMAGE OR
OVERVIEWS. BUT IT MAY BE WELL
THAT FOLKS WITH CP HAVE RISK FOR
NEUROPA THICK AND NOSEY PLASTIC
PAIN, THE LAST BEING NEWER
DESIGNATION CENTRAL NERVOUS
SYSTEM THAT MANIFESTS AS
UNPLEASANT SENSORY OR EMOTIONAL
EXPERIENCE ASSOCIATED WITH
ACTUAL POTENTIAL TISSUE DAMAGE
DESCRIBING TERMS OF SUCH. SO
THIS IS RECENTLY DESIGNATED FROM
INTERNATIONAL ASSOCIATION FOR
STUDY OF PAIN TASK FORCE. SO
STUDY WE TRIED TO UNCTION
PHENOTYPE PAIN IN CP AND SO WHAT
WE DID IS WE AGAIN USED A LARGE
COYOU ARE THE WHO OF ADULTS WITH
CP AND COMBINE WITH SPINA BIFIDA
COMPARED TO ADULTS WITHOUT CP
AND FOUND THAT ADULTS WITH CP
HAD HIGHER PREVALENCE OF ANY
PAIN DISORDERS AND PAIN
MULTI-MORBIDITY COMPARED TO
ADULTS WITHOUT CP OR SPINA
BIFIDA. WHAT WE FOUND FOR
MS. PREVATTE: LENS FOR
NOCICEPTIVE PAIN, PERIPHERAL
PAIN MUCH HIGHER BUT ALSO FOR
CENTRALIZE OR NOSEY PLASTIC
PAIN, AND NEUROPATHIC PAIN. THE
PHENOTYPE IS IMPORTANT AND
SOMETHING THAT I THINK THAT WE
SHOULD TRY TO UNDERSTAND BETTER
IN THIS POPULATION SO THAT
TREATMENTS CAN BE TAILORED
SPECIFIC PAIN PHENOTYPES. AND
EVEN AFTER ADJUSTED FOR VARIOUS
THINGS WE BECOME ADULTS WITH CPR
SPINA THE BIFIDA AT RISK OF
DEVELOPING NOCICEPTIVE AND
NEUROPATHIC PAIN. WE THEN DID
DEEPER DIVE PAIN PHENOTYPING
STUDY AT MICHIGAN TO IDENTIFY
PAIN TYPE AMONG PEOPLE WITH CP.
WE SELECTED DATA FROM 71 ADULTS
HERE, AND FOUND THAT FOR LARGE
PERCENTAGE OF PEOPLE WHO HAD CP
THEY HAD 39% HAVE ONLY
NOCICEPTIVE OR PERIPHERAL PAIN
MECHANISMS FOR 34% THERE WAS
EVIDENCE NORMOSHY PLASTIC BUT
JUST NOSEY PLASTIC PAIN. 11% HAD
NEUROPATHIC PAIN ONLY AND 16%
HAD EVIDENCE OF NEUROPATHIC AND
NOSEY PLASTIC PAIN. SO LARGE
PERCENTAGE OF ADULTS WITH CP WHO
HAD PAIN ARE COMING FROM OTHER
MECHANISMS THAN JUST PERIPHERAL
WHAT WE CONSIDER TO BE THE
CLASSIC PAIN IN CP WHICH IS
MUSCULOSKELETAL ORDER. SOME OF
THE SECONDARY FINDINGS OF THIS
PARTICULAR STUDY WHICH IS
IMPORTANT IS SCORING POSITIVE
FOR NOSEY PALACIC PAIN PREDICTED
SIGNIFICANTLY WORSE
SELF-REPORTED DEPRESSION
PERCEIVED STRESS INVOLVING THE
EFFECTS OF ACTUAL PAIN
INTENSITY. BASICALLY SUGGESTS
THAT TYPE OF PAIN IS HIGHLY
VARIABLE AMONG CP MAY ARISE
MULTIPLE MECHANISMS BUT ALSO
NOCICEPTIVE PAIN THOUGH COMMON
IN CP PAIN ARISING FROM
NEUROPATHIC OR NOSEY PLASTIC
MECHANISM CORRELATES WITH PEER
HEALTH RELATED QUALITY OF LIFE
OUTCOME. REALLY CONSIDERING WHAT
IS AFFECTING QUALITY OF LIFE, IT
IS IMPORTANT TO UNDERSTAND THE
MECHANISM OF PAIN. BECAUSE IT
IS SO RELEVANT AT THIS POINT IN
TIME ESPECIALLY THE UNITED
STATES, ONE WHAT ARE THE OPIOID
PRESCRIBING PATTERNS IN THE
U.S.? USING A LARGE COHORT OF
ADULTS WITH CP OR SPINA BIFIDA
WE LOOK AT ORAL MORPHINE
EQUIVALENT PRESCRIPTION PATTERNS
AND DID MULTI-VARIABLE LOGISTIC
REGRESSION MODELING AND ANALYST
ASSOCIATION BETWEEN HAVING CP OR
SPINA BIFIDA AND HAVING NO PAIN
ISOLATED PAIN AND CHRONIC
OVERLAPPING PAI PAIN. WE FOUND S
WITH CP OR SPINA BIFIDA
REGARDLESS OF PAIN HAD HIGHER
PAIN PATTERNS OF THEIR ORAL
MORPHINE E Q I LENT ACROSS PAIN
ISOLATED PAIN AND CHRONIC
OVERLAPPING PAIN. YOU CAN SEE
THE GRAPH LOWEST MORPHINE
EQUIVALENT PRESCRIPTION PATTERNS
WERE NO PAIN AND HIGHEST NO
SURPISE AMONG CASES OF PEOPLE
WITH CP OR SPINA BIFIDA WITH
MULTIPLE PAIN UP HERE. CLEARLY
PRECEDENT FOR USING ORAL TIGHT
MEDICATION FOR PAIN MANAGEMENT
ESPECIALLY POST SURGERY BUT HAVE
A BETTER UNDERSTANDING OF THE
EFFECT OF ESPECIALLY OPIATES IN
THE CONTEXT OF MENTAL HEALTH IN
THIS POPULATION. SO WE HAVE TO
EXTEND OUR WORK TO UNDERSTAND
LONG TERM CONSEQUENCE OF OPIOID
USE IN CP AS WELL AS
EFFECTIVENESS OF ALTERNATIVE
THERAPIES SUCH AS SLEEP
INTERVENTION, COGNITIVE BEHAVIOR
THERAPY, OTHER THINGS BUT
PREVENTABLE SCREENING TO REDUCE
PREVENTSABLE MORTALITY
MORTALITY, REDUCE HEALTHCARE
DISPARITIES ACROSS THE LIFE
SPAN, DEVELOPING TELEHEALTH
STRATEGIES TO REACH PATIENTS
ESPECIALLY WITH POOR ACCESS BUT
ESPECIALLY MENTAL HEALTH. THE
GOOD NEWS IS IS THAT THE
LANDSCAPE OF LITERATURE
PERTAINING TO LIFE SPAN IN CP IS
GROWN UP, LANDSCAPE OF
LITERATURE FROM WAY BACK IN 1953
UP TO END OF LAST YEAR, NUMBER
OF PAPERS PUBLISHED HAS REALLY
INCREASED AND CONTINUES TO
INCREASE IN 2022. BEFORE I
FINISH UP I WANT TO SHOW THE
CURRENT FUNDING SCHEME FOR CP.
THIS IS JUST SOME UNPUBLISHED
WORK THAT MEDICAL STUDENTS IS
HELPING ME WITH, SO THE HIGHEST
FUNDING PERCENTAGE IN CP IS
PERTAINING TO TREATMENTS AND
EARLY INTERVENTIONS, AND THEN
LASTLY NUMBER 6 YOU CAN SEE IN
GREEN LIFE SPANISH SHOES. THESE
ARE JUST PERCENT OF FUNDING TO
OVERALL FUNDING IN CP FROM 2014
TO 2021. RANGING ANYWHERE FROM
LESS THAN 1% TO 3%.%. FROM THAK
YOU VERY MUCH. HAPPY TO TAKE
QUESTIONS BY EMAIL AND THEN ALSO
LIKE TO ACKNOWLEDGE MY
COLLEAGUES ESPECIALLY DR.
WHITNEY ALONG WITH THE OTHER
MEMBERS OF THE ADULT PEDIATRIC
ONSET FACILITY GROUP AND MANY
OTHER PEOPLE I AM NOT ABLE TO
HIGHLIGHT VERBALLY TODAY. THANK
YOU VERY MUCH. ALSO LIKE TO
ACKNOWLEDGE MY FUNDERS AND THANK
YOU VERY MUCH. LOOK FORWARD TO
INTERACTING WITH Y'ALL.
>> HI. THANK YOU FOR WATCHING
THIS TALK TODAY. MAY NAME IS
ZACH VESOULIS, NEODAY TOLL GIST
AT WASHINGTON UNIVERSITY ST.
LOUIS. WE WILL DISCUSS RARE
RACIAL DISPARITIES IN CEREBRAL
PALSY. I HAVE NO FINANCIAL
DISCLOSURES NO DEVICES OR DRUGS
AND THIS IS A LIST OF SUPPORTERS
FOR MY VERGE. NO MYSTERY O THE
AUDIENCE PREMATURE BIRTH IS
INCREASING PROBLEM IN THE UNITED
STATES. AND HAS BEEN INCREASING
OVER THE PAST DECADES CURRENTLY
AFFECTS ONE AND TEN BIRTHS. IT
ALSO IS COMMON CAUSE OF
MORTALITY AND IS SECOND MOST TO
CONGENITAL ANOMALIES.
COMPOUNDING THIS IS UNEVEN
DISTRIBUTION OF PREMATURITY,
AFRICAN AMERICAN WOMEN HAVE 50%
HIGHER INCIDENCE OF PRE-TERM
BIRTH COMPARED TO WHITE WEAPON
WOMEN. THIS IS IMPORTANT BECAUSE
PREMATURITY COMES WITH A LOT OF
COMPLICATIONS. THE ONE THAT I'M
GOING TO FOCUS ON TODAY IS BRAIN
INJURY. THERE ARE THREE FORMS OF
BRAIN INJURY THAT ARE
CLASSICALLY WITH HOE HEMORRHAGE
INTO THE VENTRICULAR SPACE IN
FIRST THREE DAYS, THERE'S
PERIVENTRICULAR WHITE MATTER
INJURY WHICH OCCURS OVER LONGER
PERIODS OF TIME. MORE AS CHRONIC
DISEASE. CEREBRAL HEMORRHAGE
ANOTHER FORM OF HEMORRHAGE WHICH
OCCURS EARLY IN ACUTE COURSE.
THERE HAS BEEN A LOT OF STUDY IN
RESEARCH OF ALL THESE BRAIN
INJURY AND WHILE EACH HAS ITS
OWN NUANCES IN TERMS OF
MECHANISM, HYPOXIA IS A COMMON
FACTOR THAT OCCURS ACROSS ALL
FORMS OF PRE-TERM BRAIN INJURY
U. INTRAVENTRICULAR HEMORRHAGE
IS SHORT TERM OR ACUTE HYPOXIA.
YOU CAN SEE BOTTOM HERE FIGURE P
FROM PAPER A FEW YEARS AGO LOOK
AT HYPOXIA BURDEN WHAT
PERCENTAGE OF TIME WITH PULSE
OKAY SIMILAR TEAR AND BABIES
WITH SEVERE INTRAVENTRICULAR
HEMORRHAGE WITH OXYGEN
SATURATION BELOW -- WHITE MATTER
IS ASSOCIATE WITH CHRONIC
HYPOXIA. ON THE LEFT IS A FIGURE
FROM A PAPER LAST YEAR WHERE WE
LOOK AT OXYGEN EXTRACTION BY THE
BRAIN. THIS IS HOW MUCH OXYGEN
IS DELIVERED EXTRACTD BY THE
BRAIN WITH CONSIDER BEING OVERE
TRACTION PUTS BRAIN AT RISK FOR
ISCHEMIA. YOU CAN SEE HERE THIS
IS THE FIRST TWO MONTHS OF PAY
BYES LIVES WITH DOT REPRESENTING
INDIVIDUAL RECORDING ON
INDIVIDUAL DAY, BABY WHOSE ARE
ULTIMATELY DIAGNOSE WITH WHITE
MATTER HAD HIGHER OXYGEN
EXTRACTION FOR MONTHS AFTER
BIRTH OUT PRESIDENTING THEM AT
RISK OF CRITICALs SCHEMEIA.
CEREBELLAR HEMORRHAGE IS NOT AS
WELL STUDIED AS WHITE MATTER
INJURY AND BUT ALSO HAS WELL
KNOWN ASSOCIATION WITH SEVERE
LUNG DISEASE AND INCREASING
DEGREES OF PREMATURITY H AGAIN
WHICH COME BACK TO HYPOXIA. AS
PRE-TERM BIRTH IS NOT EVENLY
DISTRIBUTED ACROSS DEMOGRAPHIC
GROUPS CEREBRAL PALSY NOT
EITHER. A PAPER PUBLISHED
AFRICAN AMERICAN ARE 29% MORE
LIKELY TO BE DIAGNOSED WITH
CEREBRAL PALSY THAN WHITE
INFANTS. 50% MORE LIKELY TO HAVE
SPASTIC CEREBRAL PALSY. ALL
FOUND SIMILAR DIFFERENCE, USING
GROSS MOTOR FUNCTION
CLASSIFICATION SYSTEM THAT
AFRICAN AMERICAN INFANTS MORE
OFTEN HAVE STAGE 4 OR 5 WHEN
MOTOR OUTCOMES ARE EXAMINED.
THE EXACT MECHANISM OF
DIFFERENCE IS NOT ENTIRELY
CLEAR, AND IS COMPLICATED. BUT
CAN BE DIVIDED TO TWO AREAS.
FIRST INTRINSIC FACTORS. ON SOME
LEVEL MATHEMATICAL. AFRICAN
AMERICAN WOMEN HAVE MORE
PRE-TERM BABIES SO THERE WILL BE
MORE AFRICAN AMERICAN WOMEN
INFANTS WITH CEREBRAL PALSY.
WILL IS ALSO A CONCERN ABOUT
TOXIC STRESS DURING PREGNANCY.
FACTORS RELATED TO HOUSING
QUALITY, NUTRITION, POLLUTION,
AND OTHER FORMS OF STRESS
INCREASE RISK OF PRE-TERM BIRTH
AND NEURODEVELOPMENTAL OUTCOMES
AND THAT IS NOT EVENLY
DISTRIBUTED IN THE THE UNITED
STATES. THERE ARE EXTRINSIC
FACTORS MODIFIED IN THE NICU
ITSELF, DIFFERENCES IN NICU CARE
BY RACE OR POORLY CALIBRATED
MEDICAL DEVICES OR STANDARDIZED
RISK SCORES THAT DON'T TAKE RACE
INTO ACCOUNT WHICH POTENTIALLY
CONTRIBUTE TO BRAIN INJURY AS
WELL AS CEREBRAL PALSY OUTCOMES
SO THERE ARE HAVE BEEN LARGE
EPIDEMIOLOGIC OR POPULATION
LEVEL STUDIES, THAT HAVE
SUGGESTED THAT AFRICAN AMERICAN
PRE-TERM INFANTS HAVE SURVIVAL
ADVANTAGES OVER WHITE AND
HISPANIC INFANTS. TAKEN AS A
LARGE GROUP THIS IS TRUE.
DEPENDING ON SEX AND DEGREE OF
PREMATURITY, 25 TO 50% LESS
MORTALITY. HOWEVER THIS IS NOT
UNIVERSALLY TRUE. NOT TRUE ON
INDIVIDUAL LEVEL OF COURSE NOT
EVEN TRUE WITHIN THE OVERALL
PRE-TERM POPULATION. UNDER 28
WEEKS HAVE HIGHER MORTALITY RATE
COMPARED TO WHITE INFANTS.
HOWEVER THIS CONCEPTS HAS SEEPED
INTO A LOT OF THE UNCONSCIOUS
BIASES OF THE NICU CARE AND YOU
CAN SEE THINGS LIKE STUDY THAT
SHOW QUALITY OF CARE DEFICIT FOR
AFRICAN AMERICAN HISPANIC IN THE
NICU ACROSS EIGHT QUALITY OF
CARE METRICS. THERE WAS A
DEFICIT FOR THAT POPULATION.
THERE IS ALSO THIS PERVASIVE
TERM USED FREQUENTLY IN NICU OF
WHITE BOY SYNDROME, ANECDOTAL SO
BASED ON POPULATION STUDIES BUT
EXCUSE TO EXPLAIN AWAY
PARTICULAR MORBIDITIES OF WHITE
MALE INFANTS. BOTH FACTORS
CONTRIBUTE TO DECREASE QUALITY
OF CARE FOR ALL INFANTS IN IF
NICU. A HIGH QUALITY --
QUALITATIVE STUDY TALKING TO
PARENTS OF INFANTS IN THE
NICU,AFRICAN AMERICAN PARENT
REPORT FREQUENTLY LACK OF
ATTENTION TO INFANTS PERHAPS
INFANTS ARE PERCEIVED MORE
ROBUST AND DON'T NEED AS MUCH
CARE WHICH IS INCORRECT BUT
PERCEPTION AND FOR WHITE PARENTS
THEY REPORT LACK OF DIAGNOSTIC
INTEREST THAT MANY PROBLEMS ARE
CAST AWAY AS BEING PART OF THIS
WHIMPY WHITE BOY SYNDROME AND
THAT MIGHT DELAY TREATMENT OR
PERHAPS DIAGNOSEsSIS OR
SOMETHING ELSE, ANOTHER FACTOR
THAT CONTRIBUTES IS COMPETING
OUTCOMES. I AM SURE YOU KNOW,S
OUR TREATMENT OPTIONS IN NICU
ARE BASED GENERALLY VERY LIMITED
CLINICAL DATA AND THERE IS A LOT
OF HETEROGENEITY BETWEEN
PROVIDERS IN TERMS OF
VENTILATION STRATEGIES,
MEDICATION STRATEGIES, AND
SCREENING TOOLS. THERE ARE NICE
RISK STRATIFICATION TOOLS INTO
EXISTENCE MORE RECENTLY THAT
HELP TO STANDARDIZE CARE, TWO
MOST COMMONLY USED ONES ARE BPD
CALCULATOR FOR POST NASAL
STEROIDS ANDCA CALCULATOR FOR TM
INFANTS THAT PROVIDE OBJECTIVE
DECISION MAKING THAT CAN BE
INCORPORATED WITH CLINICAL
GUIDELINES. HOWEVER, IF RAISE OR
SEX OR SOCIOECONOMIC STATUS IS
NOT INTEGRATED IN TO THESE
CALCULATORS, IF THE POPULATION
IN WHICH THEY ARE DEVELOPED IS
NOT SUFFICIENTLY DIVERSE,
INTRINSIC BIAS IS INTRODUCED
INTO THIS ANALYTIC ALGORITHM AND
THE RESULTS OF THE OUTCOME ARE
UNPREDICTABLE. SOME CASES YOU
HAVE A COMPETING, THINGS LIKE
DEATH, IF BABIES DIE THEY ARE
LESS LIKELY TO HAVE THAT
OUTCOME. IF THIS THAT IS
UNEVENLY DISTRIBUTED BY RACE IT
WILL PRODUCE INACCURATE
PREDICTIONS. SO LET'S TAKE THE
BPD CALCULATOR, PUBLISH TWO
PAPERS USING THIS BPD CALCULATOR
AND THRESHOLD 60% RISK FOR BPD
AS TARGETED POINT FOR POSTNATAL
STEROID TREATMENT. IT WAS
EFFECTIVE, REDUCE BPD AND
CEREBRAL PALSY IN THE PATIENTS
WHO HAVE THIS APPROACH TAKEN.
THERE IS CONFOUNDING FACTORS
HERE, THOUGH AS I MENTIONED
EARLIER MORTALITY OVERALL IS
LOWER IN PRE-TERM AFRICAN
AMERICAN INFANTS, THOSE BORN
MOST PRAY METURELY IS TWO TO
FOUR TIMES HIGHER THAN AFRICAN
AMERICAN INFANTS, MOST MORTALITY
OCCURS IN SEVEN DAYS BEFORE
CALCULATOR POINT IS USED. WHICH
MEANS BLACK INFANTS POTENTIALLY
MORE LIKELY TO DEVELOP BPG
BECAUSE THEY ARE SICKER ARE
INCLUDED IN THE DATA SET, THEY
PASSED AWAY. THEY FALL OUT
PREACH REACH THAT PRIMARY
OUTCOME, BABIES BEHIND ARE NO
LONGER REPRESENTATIVE OF ALL
INFANTS. SO THIS LEADS TO
UNPREDICTABLE RESULTS. IF YOU
TAKE THE BPD OUTCOME ESCAMBIA
MAY TORR, RISK OF MODERATE OR
SEVERE DECREASES WITH INCREASE
FIO 2 BECAUSE BABIES WHO DIED
ARE DROPPING OUT. BUT BECAUSE
OF UNEVEN DISTRIBUTION OF
MORTALITY AND PREMATURITY, THAT
POTENTIALLY MEANS SOME INFANTS
ACCORDING TO THE CALCULATOR ARE
NEVER PRESCRIBED STEROIDS.
WHICH MEANS THEY MISS OUT ON
THIS REDUCTION IN BPD AND
CEREBRAL PALSY. THIS ARE SOME
FIGURES FROM PAPER FROM ONE OF
OUR JUNIOR FACULTY MEMBERS IN
THE LAB WHO LOOKED A T THIS
CALCULATOR WITH SYNTHETIC
INFANTS AND SHE PLOTTED O OUT
WHETHER THE RISK PREDICTION IS.
ON THE RIGHT IS MORTALITY AND
YOU CAN SEE THAT AS FIO 2
INCREASES RISK OF MORTALITY
INCREASES WHICH IS EXPECTED AND
THE BLACK INFANTS HAVE HIGHER
RISK OF MORTALITY. ACROSS THE
BOARD WHICH IS ALSO WHAT WE
EXPECT FOR BABY BORN AT 24 WEEKS
AS AN EXAMPLE HERE. ON THE LEFT
YOU SEE PREDICTED RISK OF BPD
WHICH DECREASES AS FEO 2
INCREASES WHICH DOESN'T MAKE
SENSE, THOSE BABIES MORE SEVERE
DISEASE. YOU CAN SEE AGAIN THIS
CONSISTENT GAP BETWEEN THE WHITE
AND BLACK INFANTS IN TERMS OF
PREDICTED RISK AN THRESHOLD FOR
TREATMENT WHICH IS SHOWN BY
GREEN LINE 60%, DEMONSTRATE THAT
BLACK INFANTS MANY THIS EXAMPLE
HERE ARE MALE TOP AND FEMALE
BOTTOM NEVER REACH THAT 60%
THRESHOLD FOR INTERVENTION WHICH
MEANS THEY NEVER BE PRESCRIBED
STEROIDS NO MATTER WHAT FIH 2
WAS AND MISSING OUT ON
BENEFICIAL TREATMENT BECAUSE OF
THE WAY THAT THE ALGORITHM IS
WORKING IN CALCULATOR. THERE'S
ANOTHER LAYER OF BIAS. PULSE
OKAY SIMILAR TEARS ONE STANDARD
OF CARE DEVICE EVERY BABY IN
NICU HAS ONE ON AND THEY UNDER A
SIMPLE PRINCIPLE OF LIGHT
ABSORPTION, RED LIGHT INTO
TISSUE HAND OR FOOT ON THIS
EXAMPLE HERE BOUNCES AROUND AND
COMES BACK TO RECEIVER. THERE
ARE TABLES INSIDE THE PULSE OKAY
SIMILAR TEAR THAT MEASURE HOW
MUCH LIGHT RETURNS BACK WITH
IDEA THAT SOMETHING ABSORBS MORE
RED LIGHT IS INDICATIVE OFOXI
HEMOGLOBIN, IT ABOUTSORS MORE
RED LIGHT THAN DEOXI, SO THE
MORE ABSORPTION THE HIGHER THE
OXYGEN SATURATION. THE PROBLEM
IS MEL NIH ABSORBS NEAR INFRARED
LIGHT SO SECONDARY FACTOR
ABSORBING THAT LIGHT WHICH IT
DOESN'T RECOGNIZE AND REPORTS
HIGHER OXYGEN SATURATION IN
PATIENTS WITH MORE MELANIE THAN
IS ACTUALLY TRUE. BEFORE
DEVICES ON THE MARKET THERE'S
INTERNAL VALIDATION TESTING OF
COURSE BUT THERE IS CONCERN THAT
THE PATIENT POOL IN THE ORIGINAL
VALIDATION STUDIES WAS NOT
RACIALLY DIVERSE. THIS CAME OUT
AND HAS BEEN WIDELY DISCUSSED
AFTER PAPER BY (INAUDIBLE) IN
2020 LOOKING AT PATIENTS
ADMITTED TO THE HOSPITAL WITH
COVID-19 IN 2020 WITH THEY
COMPARED OXYGEN SATURATION
MEASURED BY ARTERIOL BLOOD GAS,
GOLD STANDARD TO THE
SIMULTANEOUS MEASURE ON PULSE
OKAY SIMILAR TEAR AND PATIENTS
DIVIDED BY RACIAL STATUS. AND IN
PARTICULAR CONCERN CAME UP WITH
A CULT HIGH POX SEEMIA THIS IS
HYPOXEMIA OCCUR WHEN PULSE IS
READING NORMAL OR EXPECTED VALUE
BUT THE GOAL STANDARD
MEASUREMENT IS TRULY HIGH
POXEMIC. AND STUDY BLACK PARTES
HAD THREE TIMES FREQUENCY OF
THIS OCCURRENCE SO THIS IS
ARTERIAL OXYGEN SATURATION LESS
THAN 88% WHEN PULSE OX GREATER
THAN 92% WE DID SIMILAR STUDY
WHICH IS PUBLISHED EARLIER THIS
YEAR BUT IN A PRE-TERM PATIENT
POPULATION OPPOSED TO ADULT ICU
PATIENTS WE DID THE SAME
APPROACH WITH ARTERIAL OXYGEN
SAMPLES AND SIMULTANEOUS PULSE
OKAY SIMILAR TEAR SAMPLES AND
FOUND SIMILAR RESULTS, 2.4 RISK
OF OKAY CULT HYPOXEMIA. WE
CHANGE THE RANKS TO CHANGE FOR
PRE-TERM INFANTS, ARTIER WHERE
WILLIAL OXYGEN SATURATION LESS
THAN 85% BUT READING IS GREATER
THAN 90% MORE COMMON IN AFRICAN
AMERICAN INFANTS. YOU CAN SEE IN
THE PLOT ON THE LEFT THE DEGREE
OF MEASUREMENT BIAS THERE IS A
DIFFERENCE, THERE IS A BIAS GAP
BETWEEN WHITE AND BLACK INFANTS,
SOLID VERSUS DOTTED LINE
REGARDLESS OF THE SPO 2
MEASUREMENT, BRIDGES ACROSS THE
ENTIRE SPAN OF PULSE OXIMETRY
MEASUREMENT AND POSITIVE BIASEST
MAYING OXYGEN SATURATION. THIS
IS IMPORTANT BECAUSE PIE POXIA
IS LEADING PARTICULARLY ONES
THAT MAKE US THINK THAT THE BABY
HAS HIGHER SATURATION THAN DO
INCREASES THE INCREASE THE RISK
OF HYPOXEMIA. THE FDA IS
STUDYING THIS AND THERE IS A
MEETING OF MEDICAL DEVICE
ADVISORY COMMITTEE SCHEDULED
LATER THIS YEAR. TO WRAP UP IN
CONCLUSION, THERE IS AN UNEVEN
RISK, ALL PRE-TERM INFANTS RISK
FOR BRAIN INJURY CEREBRAL PALSY
THE DISTRIBUTION OF THAT RISK IS
NOT EVEN, AFRICAN AMERICAN WOMEN
HAVE PRE-TERM INFANTS AND
INFANTS HAVE MORE SEVERE
CEREBRAL PALSY. TOOLS WE USE TO
TAKE CARE OF INFANTS IN THE NICU
HAVE BIAS. THE
UNDERREPRESENTATION OF AFRICAN
AMERICANS WHEN THESE TOOLS
DEVICES ARE DEVELOPED LEADS TO
PERFORMANCE BIAS. AND MANY OR
MOST CASES THAT IS UNRECOGNIZED
SO CARE IS PROCEEDING WITHOUT
THIS GAP BEING RECOGNIZED OR
ADDRESSED. THIS LEADS TO
INCREASE RISK OF PULMONARY
DISEASE, INCREASE HYPOXIA, ALL
PRECIPITATING FACTORS OF BRAIN
INJURY AND SET STAGE FOR LONG
TERM NEURAL IMPAIRMENT INCLUDING
CEREBRAL PALSY. SO WHAT IS
NEEDED TO MOVE FORWARD TO CLOSE
THIS GAP? THE I PRIMARY THING IS
FOR DEVELOPMENT OF ANY NEW MODEL
WHETHER MEDICAL DEVICE OR
PREDICTION MODEL, CLINICAL TOOL
FOR INTERVENTION. THERE NEEDS TO
BE INTENTIONAL USAGE OF DIVERSE
PATIENT POPULATIONS THAT INCLUDE
ADEQUATE OR EVEN
OVERRECOMMENDATION MINORITY
GROUP MEMBERS SO THAT THE
DEVICES HAVE EQUAL PERFORMANCE
REGARDLESS OF THE PATIENTS
RACIAL OR ETHNIC BACKGROUND.
ALSO TO ACCOUNT FOR COMPETING
OUTCOMES ESPECIALLY WHEN THEY
ARE UNEVENLY DISTRIBUTED ACROSS
THE POPULATION. THEN ADDITIONAL
RESEARCH THAT NEEDS TO OCCUR
PARTICULARLY FROM CEREBRAL PALSY
STANDPOINT LOOK ACT THE
ENTERRECOMMENDATION BETWEEN RACE
AND SOCIAL ECONOMIC STATUS. TO
UNDERSTAND THE PROGRESSION OF
CEREBRAL PALSY AND THE TREATMENT
OF IT. PARTICULARLY WHY THE
DISTRIBUTION OF CEREBRAL PALSY
IS SO DIFFERENT POSTNATALLY WITH
MUCH MORE SPASTIC SEVERE
CEREBRAL PALSY IN AFRICAN
AMERICAN PATIENT POPULATION.
WITH THAT I WOULD LIKE TO
ACKNOWLEDGE ALL THE MEMBERS OF
RESEARCH LAB THAT MAKE THIS WORK
POSSIBLE AND ALL THE DIFFERENT
SOURCES OF OUR FUNDING. THANK
YOU FOR LISTENING.
>> WHAT A SERIES OF TALKS.
APPRECIATE PERSPECTIVES ON
CLINICAL RESEARCH AND I
APPRECIATE THE AUDIENCE. WE HAVE
ALMOST 200 VIEWERS TO THIS
WORKSHOP. SO LET ME REMIND YOU
THAT THE WHOLE MEETING TODAY'S
SESSION AS WELL AS YETS WILL BE
ARCHIVED ON THE NIH VIDEOCAST
SITE. SHOULD BE AVAILABLE IN A
COUPLE OF DAYS. AND WE HAVE SOME
GREAT QUESTIONS AND COMMENTS
THAT HAVE BEEN ENTERED IN THE
LIVE FEEDBACK BUTTON. AND AS WE
GO THROUGH THIS, WE WELCOME ANY
ADDITIONAL SUBMISSIONS THAT.
COIN. SO BEFORE WE START THAT
DISCUSSION SESSION WE SHOULD
HAVE ABOUT 35, 40 MINUTES OF
DISCUSSION, LET ME JUST BRIEFLY
REVIEW WHAT WE WENT THROUGH THIS
MORNING. STACEY DUSING STARTED
US OUT WITH A DISCUSSION THE
IMPORTANCE OF EARLY
INTERVENTION, AND SHE RELIED A
LOT ON CLINICAL CONTEXT HOW CP
IS DIAGNOSED AND DIFFERENT
THERAPIES THAT ARE OUT THERE.
BROAD CHALLENGE TO OUR COMMUNITY
AND TO TWO PARENTS, KATHERINE
HUSTAD FOLLOWED UP WITH SPEECH
AND LANGUAGE DISARTHEROIA, AND
INTERVENTIONS TO SUPPORT
LANGUAGE AND INTELLIGIBILITY,
PROMOTE COMMUNICATIONS WHICH IS
VERY IMPORTANT FOR SOCIALIZATION
OF KIDS. DIANE DAMIANO DISCUSSED
POLICIES FOR CEREBRAL PALSY
INCLUDING MOBILE NON-INVASIVE
APPROACHES TO GIVE INTERESTING
INSIGHTS A T THE BRAIN FUNCTION
AND THESE CAN BE USED IN MORE
NATURALISTIC SETTINGS. MARK
PETERSON REMINDED US OF SOME OF
THE SECONDARY ISSUES THAT ARISE
IN CP AND TRANSITION TO
ADULTHOOD. ESPECIALLY METABOLIC
AND MUSCULOSKELETAL ISSUES, ALSO
PAIN AND EVEN MENTAL HEALTH
ISSUES, AND PERHAPS NEED FOR
CONTINUED VIGILANCE AND CLINICAL
SUPPORT. AND FINALLY ZACHARY
VESOULIS PROVIDED INSIGHTS TO
RACIAL DISPARITIES WITH A BRIEF
DISCUSSION OF SOME OF THE
EXTRINSIC INFLUENCES THAT AFFECT
INCIDENCE ACCESS AND EQUITABLE
THERAPEUTICS SUPPORT AND
CLINICAL OUTCOMES AND VALIDITY,
ACROSS RACIALIZED GROUPS. SO
LET'S SHIFT OVER INTO SOME OF
THE DISCUSSION AND WE LOOK
FORWARD TO THE SPEAKERS UNMUTING
THEMSELVES AND RESPONDING.
LET'S GET ALL THE SPEAKERS ON
THE SCREEN HERE. IF WE CAN. WE
ARE ALL SET AND LET ME START
WITH STACEY, YOU PROVIDED SOME
GREAT DISCUSSION OF WHAT IS OUT
THERE. IT IS EXCITING BUT ALSO
PUTS A TREMENDOUS BURDEN AND
ANXIETY ON THE PARENTS. CAN YOU
SAY A LITTLE BIT ABOUT HOW
PARENTS CAN COPE WITH THIS
TREMENDOUS RUSH OF INFORMATION
IN DECIDING WHAT IS RIGHT FOR
THEIR KIDS AND TO NOT FEEL
OVERLY GUILTY BY BUT USE THESE
INTERVENTIONS. THANK YOU, RALPH
THIS IS A GREAT QUESTION. I
THINK ONE OF THE BIGGEST THINGS
FOR US TO KEEP IN MIND IS THAT
IF WE ARE SUPPORTING PARENTS
FROM THE NICU TO HOME, OR FROM
THOSE EARLY RISK MARKERS, UP
UNTIL THEY ARE GOING THROUGH THE
PROCESS OF EARLY INTENTION THEN
WE ARE RIGHT THERE WITH THEM. WE
ARE WALKING THIS PATH WITH THEM
VERSUS SAYING YOU CAME IN FOR
FOLLOW-UP VISIT OR SAW
NEUROLOGIST, AND ALL OF A SUDDEN
SOMEONE SAYS CEREBRAL PALSY AND
THEY ARE NOT PREPARED. WHEN WE
HELP PARENTS FROM THE BEGINNING,
SEE HOW TO BOND WITH THEIR BABY
AND HOW TO RELATE TO THEM, WE
THINK IT IMPROVES COMPLIANCE
WITH PARTICIPATING IN THIS EARLY
DETECTION PROCESS BUT ALSO
PREPARATION FOR HANDLING THE
NEWS AND THE DECISION TO
INCREASE OR DECREASE THEIR
SERVICES. SO IT BODES FOR WHY IT
IS SO IMPORTANT TO SUPPORT THEM
EVEN PRIOR TO DIAGNOSIS OF CP.
>> IF IT IS THEIR FIRST TRIAL OR
THEY HAVE OTHER TRIALS AND HOW
DOES THIS SUPPORT TRAINING
AFFECT LARGER FAMILY?
>> IF YOU HAVE OTHER CHILDREN
AND IF THEIR OTHER CHILD HAD
DISABILITY SOMETIMES WE HAVE
FAMILIES WHOSE FIRST CHILD HAD A
DISABILITY AND THEY ASSUME THE
OTHERS ARE TOTALLY FINE. THEY
MAY OR MAY NOT BE. THE BIG PIECE
IS WE HAVE TO LOOK IN THE FAMILY
STRUCTURE. AND THAT IS THE ROLE
OF INTERVENTIONISTS OR THERAPIST
WHOSE ARE USED TO WORKING WITH
YOUNG FAMILIES. IT IS ONE OF THE
REALLY IMPORTANT MARKERS OF WHY
WE NEED TO HAVE PEOPLE WHO
SPECIALIZE IN THE FIRST YEAR OF
LIFE. SEEING THESE KIDS, NOT THE
SAME THING TO SEE A BABY AS THEY
LEAVE THE NICU AS TO SEE A
THREE-YEAR-OLD. A TWO,
THREE-YEAR-OLD IS A DIFFERENT
CHILD THAN A NEWBORN COMING ON
AND WE NEED TO SUPPORT THE
ENTIRE FAMILY UNIT IN A
DIFFERENT WAY.
>> KATHERINE SHIFT TO TOPICS YOU
RAISE, FOR KIDS THAT HAVE MORE
SERIOUS COMMUNICATION ISSUES, WE
WERE TALKING OPTIONS FOR
THERAPY, AUGUST MENTIVE AND
SUPPORTS, STILL A GOOD BALANCE
BETWEEN PROMOTING THAT ARE OWN
SPEECH AND THERAPY VERSUS WHEN
THEY HAND OFF TO OTHER METHODS
AND YOU DISCUSS WITH HAND OFF
WHAT YOU MEAN?
>> MOST IMPORTANTLY IT DOESN'T
HAVE TO BE A HANDS OFF USING
ASSISTIVE TECHNOLOGIES CAN
HAPPEN ALONG WITH USE OF SPEECH.
SO FOR ME I THINK INTRODUCING
COMMUNICATION TECHNOLOGIES RIGHT
AWAY FOR CHILDREN WHO NOT
MEETING THOSE EARLY MILESTONES
OR ARE LATE ON CROSSING
THRESHOLDS TOWARD 50%
INTELLIGIBILITY, IT IS NOT
EITHER/OR, IT IS BOTH AND.
ASSISTIVE TECHNOLOGIES CAN BE
USEFUL FOR SUPPORTING SPEECH
DEVELOPMENT AND ALSO ARE VERY
IMPORTANT FOR SUPPORTING
PLAINING DEVELOPMENT AND THE
UNDERSTANDING OF LANGUAGE AND
ENGAGEMENT SOCIAL PARTICIPATION
I THINK IT IS IMPORTANT WE
EMPHASIZE TO FAMILIES THAT THESE
TOOLS ALL WORK TOGETHER KIND OF
LIKE A WALKER. TO SUPPORT
COMMUNICATION.
>> I THINK ALSO IT IS IMPORTANT
TO REALIZE HOW IMPORTANT
COMMUNICATION IS, FOR A KID IN
TERMS OF CONTEXT SO CAN YOU
SPEAK HOW THAT CONNECTS TO
SOCIAL DEVELOPMENT AND
ISOLATION?
>> ABSOLUTELY. SO IT IS
CRITICAL, EVEN IN VERY EARLIEST
INTERACTIONS I HAVE A COUPLE OF
POST DOCS IN MY LABORATORY WHO
ARE INTERESTED IN EARLY PARENT
CHILD INTERACTION AND WHEN YOU
LOOK AT CHILDREN WHO HAVE SEVERE
MOTOR IMPAIRMENT THE WAYS THEY
INTERACT WITH PARENTS ARE
DIFFERENT PARENTS DOING MORE
CARES, HOEDING HEADS UP WIPING
MOUTHS, THEY ARE SITTING IN THE
BABY IN FRONT OF THEM RATHER
THAN FACING THEM WHEN SITTING ON
THE FLOOR. AND SO WE ARE VERY,
VERY DIFFERENT DYNAMICS IN
PARENT CHILD INTERACTION, IT
HASN'T BEEN STUDIED. IT IS NOT
WELL UNDERSTOOD HOW THAT
INFLUENCES COGNITIVE DEVELOPMENT
LANGUAGE DEVELOPMENT SOCIAL
DEVELOPMENT SO THAT IS A REALLY
IMPORTANT AREA FOR FUTURE
RESEARCH TO DEVELOP
INTERVENTIONS THAT HELP PARENTS
ENGAGE WITH CHILDREN WITH MOTOR
IMPAIRMENT TO MAXIMIZE THESE
FACE TO FACE INTERACTIONS TO
SUPPORT SPEECH AND SUPPORT
LANGUAGE DEVELOPMENT.
>> ONE THING MORE AWARE OF IS
ABLEISM IS HOW SUPERFICIAL
THINGS ABOUT PEOPLE WITH
DISABILITIES INHIBITS OR AFFECT
HOW PEOPLE RELATE TO THEM AND
VERY NEGATIVE WAY, ARE YOU
SEEING THAT IN TERMS OF SPEECH
OR LANGUAGE BRIGHTLY ENGAGING
BECAUSE OF THE SUPERFISHIALITY
OF SPEECH GETTING TREATED IN
INFERIOR WAY? ARE YOU SEEING
ABLEISM --
>> YES, THIS IS WHERE
NEURODIVERSITY MOVEMENT COMES
INTO PLAY WITH THIS POPULATION
IS THINKING ABOUT HOW WE CAN DO
PARTNER TRAINING PARTNER
SUPPORTS FOR PARENTS AND ALSO
FOR PEERS, AND TEACHERS, OTHER
DARE PROVIDERS PEOPLE IN
COMMUNITY TO SUPPORT
COMMUNICATION AND NOT SPEAK FOR
SOMEONE NOT TRY MAKE IT EASY
ASKING YES NO QUESTION BUT TO
OFFER OPPORTUNITIES FOR FULL
COMMUNICATION PARTICIPATION
UNDERSTANDING IT WILL TAKE
LONGER WHEN SOMEONE HAS
DISARTHEROIA OR SOMEONE IS USING
A COMMUNICATION DEVICE OR THE
TWO OF THESE MODALITIES BLENDED
TOGETHER RATE OF COMMUNICATION
WILL TAKE LONGER AND WE HAVE TO
BE TOLERANT OF THAT, THAT IS
COMMUNICATION GETTING THE WORD
TO SUPPORT INDEPENDENCE Z
SELF-DETERMINATION FOR
INDIVIDUALS TO CP ACROSS THE
LIFE SPAN.
>> TIIAN YOU HAVE GREAT
INTRODUCTION TO SOME OF THE
TECHNOLOGIES AND OPPORTUNITIES
AVAILABLE FOR KIDS WITH CEREBRAL
PALSY. I WANTED TO THINK BETWEEN
THERAPIES AND -- THAT ARE
THERAPEUTIC TRYING TO PROMOTE
VERSUS THINGS MORE SUPPORTIVE.
HOW DO YOU INTEGRATE THOSE AND
HOW PARENTS SHOULD DEAL WITH
THEM?
>> FIRST, NICE TO SEE YOU. I
WANT TO THANK ALL THE
ORGANIZERS, THIS HAS BEEN A
GREAT CONFERENCE. MANY YEARS AGO
MORE THAN FIVE YEARS AGO TO SEE
THE GROWTH IN FUNDING AND TALENT
IS REMARKABLE AND EXCITING. SO
THANKS FOR LETTING ME BE PART OF
THIS. LET ME UNDERSTAND YOUR
QUESTION. YOU ARE TRYING TO
DIFFERENTIATE ARE YOU SAYING
THAT THE THINGS I'M PROPOSING
AROUND THERAPIES OR WHAT ARE YOU
TRYING TO --
>> I'M SAYING BOTH BUT IN THE
PARENTS MINDS THAT HE ARE
THINKING HOW I -- WHAT THERAPIES
AND SUPPORTS MY KIDS NEED AND ON
THE OTHER HAND THEY ARE THINKING
INDEPENDENTLY ABOUT WHAT CAN
HELP MY KID FUNCTION IN THIS
SCHOOL IN THE HOME AND SO ON.
YET INTEGRATED. CAN YOU HELP
WAYS PARENTS THINK ABOUT THERAPY
VERSUS SUPPORTS.
>> I THINK REALLY GOOD EXAMPLE
ARE ROBOTIC FOR EXAMPLE. IN MY
LAB WE ARE WORKING FOR DEVICES
THAT ARE EXERCISE DEVICES, THAT
KIDS BECAUSE WHAT I TRY TO DO IN
OUR RESEARCH IS TO GET THINGS
INTO THE HOME BECAUSE BECAUSE
THEY NEED MORE INTENSE
INTERVENTION THAN CAN BE
PROVIDED IN PHYSICAL THERA THERF
IT IS SOMETHING DONE WITH A MART
DEVICE, THOUGH EXPENSIVE NOW
EVENTUALLY WON'T BE THAT
EXPENSIVE BUT NEED MORE
DEVELOPMENT. ANOTHER GREAT --
SOME OF THE ROBOTIC JUST AN
EXAMPLE THE ROBOT OUT THERE THAT
A LOT OF FAMILIES ARE STARTING
TO USE, IT IS (INAUDIBLE) 4'S
AND 5s, IT IS WONDERFUL
BECAUSE YOU SEE CHILDREN WALKING
IN THE PARK WITH THEIR FAMILIES
FOR THE FIRST TIME, IT IS ABOUT
PARTICIPATION EVEN THOUGH WE
WILL HAVE ADDED HEALTH BENEFITS
LIKELY, IT IS REALLY ABOUT
PARTICIPATION SO I THINK THAT
YOU ARE RIGHT, SOME ARE
THERAPIES AND SOME TO IMPROVE
IMINTERACTION AND INDEPENDENT IN
EVERY DAY LIFE.
>> THESE TECHNOLOGIES ARE
EXCITING BUT HOW TO PROMOTE
EQUITABLE ACCESS SO THAT THESE
DEVELOPED BROADER AUDIENCES AND
HOW SUPPORTIVE IS THE CURRENT
HEALTHCARE SYSTEM? IN TERMS OF
PROVIDING ACCESS?
>> ALL BIG QUESTIONS. I WANT TO
MAKE SURE EVERYBODY REALIZE
THESE ARE YOUNG FIELDS ARE HIGH
POTENTIAL. SO IT WAS HARD TO DO
THAT STUFF EVEN SOME OF THE
DEVICES STACEY AND I USING FOR
BABIES THEY ARE IN THE CLINIC
PEOPLE CAN'T GET THEM, THESE
AREN'T ACCESSIBLE YET. SO THESE
WILL BE COMING IT DOESN'T HELP
FAMILIES SO MUCH NOW BUT THE
MORE INFO WE GET FOR FAMILIES TO
MAKE THE -- THAT WILL BE HELPFUL
IS KEY TO DEVELOPING THE BEST
MORE QUICKLY.
>> SOME OF THE THINGS YOU ARE
SHOWING WITH THE TECHNOLOGY
LOOKING AT BRAIN FUNCTION BRAIN
WAVES, IT IS REALLY INTERESTING
AND REVEALS ABOUT HOW CEREBRAL
PALSY ALTERS BRAIN FUNCTION OR
BRAIN TRIES TO WORK AROUND THOSE
THINGTHINGS. YOU CAN GET TREMENS
INSIGHT. HOW DO YOU DEAL WITH
HETEROGENEITY OF CEREBRAL PALSY
CAUSES AN FUNCTION?
>> WE JUST BECOME CONVINCED EACH
CHILD IS THEIR OWN -- BRAIN IS
THEIR OWN PUZZLE TO SOLVE. WHEN
MICHAEL WAS TALKING ABOUT N OF 1
STUDIES, GENETIC PROFILE HOW A
THEY WOULD CHOOSES TO REORGANIZE
BRAIN THROUGH DEVELOPMENT IS
TOTALLY DIFFERENT ACROSS KIDS.
I GET NERVOUS WE DO THINGS,
PRESCRIBE TREATMENTS, AIMING TO
DO ONE THING BECAUSE THEY ASSUME
THAT IS THE PROBLEM ALL KIDS
HAVE AND WE COULD BE WRONG.
CHILDREN WITH UNILATERAL C, P,
ONE IS ONE SIDE OF THE BRAIN IS
CONTROLLING BOTH SIDES AND WILL
IS NO PATHW PATHWAYS VERSUS THED
THAT HAS PATHWAYS THAT YOU
SHOULD BE TARGETING THEY NEED TO
UNDERSTAND WHAT IS CAPABILITIES
OF EACH CHILD CHILD IS BEFORE WE
PRESCRIBE THESE THINGS. THESE
ARE THINGS THAT WILL COME.
>> I APPRECIATE THE PERSPECTIVE
GIVEN ABOUT LONGITUDINAL FACTOR,
GOOD NEWS WE ARE CONSIDERING
DEALING WITH ADULTS WITH CP AN
KEEPING SUPPORT. ONE RESEARCH
QUESTION, YOU TALK ABOUT
SECONDARY ISSUES AND ARE THEY --
YOU CAN SEE THAT BEING
MARGINALLY CONSEQUENCE OF THE
MOTOR IMPAIRMENTS THE CONSTRAIN
ABNORMAL MOVEMENTS AND
INACTIVITY OR IS IT POSSIBLE
THAT CAUSES THE INSULTS IMPACTS
LEADS TO SUS L PATHOPHYSIOLOGY
THAT LEADS TO CARDIOVASCULAR
SYSTEMS?
>> GOOD QUESTION. YES IS THE
ANSWER. I THINK IT IS BOTH AND
AND WHAT WE HEAR IS MY PHYSICIAN
SAID CP IS GETTING WORSE BUT I
KNOW CP IS A NON-PROGRESSIVE
CONDITION, WE ALL PROGRESS. WITH
AGE AND IT GIST ALONG WITH LEVEL
OF IMPAIRMENT, TYPE OF CP,
EXTENT SOMEBODY IS SEDENTARY MAY
HAVE FASTER OR ACCELERATED
PROGRESSION. THE MECHANISMS
LINKING PREMATURE AGING ARE TO
BE DETERMINED BUT THAT IS
SOMETHING THAT WE ARE ACTIVELY
TRYING TO UNDERSTAND WANDS
PURSUE BUT THERE IS SOMETHING
ABOUT THE INITIAL INSULT THAT
HAS TO DO WITH SOME OF THESE
DOWNSTREAM LATER ONSET EVENTSs
SPECIALRY RELATED TO COGNITIVE
HEALTH AND MENTAL HEALTH
DISORDERS. THAT IS TO BE
DETERMINED BUT MAKES SENSE
SOMETHING ASSOCIATED WITH
NEUROLOGIC INSULT CHRONIC
DISEASE PRESENCE LATER IN LIF L.
THIS PREMAMATURE AGING COMES UP
IN DOWN'S SYNDROME BUT THERE,
THERE'S PROBABLY GENETIC CAUSE
BECAUSE SOME OF THE THINGS ON
CHROMOSOME 21 RELATED TO SOME
AGING CONDITION. NOT SURE THAT
-- IF WE SHOULD USE THAT ANALOGY
OR NOT. BY THE WAY THESE THINGS
ABOUT SECONDARY ISSUES HOW DOES
IT CONNECT BACK TO SOME OF THE
THINGS MIGHT OCCUR SPONTANEOUS
GENES COULD THAT CONNECT WITH
YOUR FINDINGS ON SECONDARY
ISSUES?
>> I NEED TO TALK WITH MICHAEL,
I THINK SOME OF THE THINGS WE
SEE AS FUTURE MECHANISMS
UNDERLINE SOME OF THE DISEASE WE
ARE FINDING LIKE INFLAMMATION,
HYPERINFLAMMATION, OXIDATIVE
STRESS, THINGS THAT UNDERWRITE
THESE DISEASES CAN BE MECHANISMS
WE MINDS EVEN IN YOUNG ADULTS
WITH CP WITH THESE DISEASES WITH
CHRONIC CONDITIONS.
>> YET TO BE DETERMINED BUT I
DEFINITELY THINK THAT IS THE
RIPE AREA FOR STUDY THAT EFFECT
CONNECTS BACK TO OUR PLAN, THAT
SHOWS A LONGITUDESNAL LIFE SPAN
APPROACH TO NOT ONLY CEREBRAL
PALSY BUT THE OTHER CHRONIC
CONDITIONS THAT WE DEAL WITH.
YOU GAVE US SOME VERY GOOD
PERSPECTIVES THERE, WE HAVE TO
HEAR THOSE MESSAGES. HOW MUCH OF
THAT HAS TO DO WITH THE WAY
CLINICIANINGS ARE TAUGHT IN PAIN
AND RACIAL CHILDRENS SO HOW MUCH
IS THAT CAN BE TAUGHT IN CONTEXT
OF CLINICAL EDUCATION?
>> ABSOLUTELY. AT THE
APPRENTICESHIP MODEL OF MEDICAL
EDUCATION EXACERBATES THIS. IF
IRELATIVELY SMALL SUBSET OF
PEOPLE PROVIDING THE TRAINING TO
PEOPLE WHO GO OUT INTO CLINICAL
PRACTICE ON THEIR OWN, THAT ALSO
MEANS SMALLER NUMBER OF PEOPLE
THAT NEED TO BE RETHINK THEIR
APPROACH OR ATTITUDE THIS GOES
BEYOND JUST MEDICAL TRAINING AND
SOMETHING THAT IS PERVASIVE
ACROSS THE ENTIRE NICU, THAT
REALLY EXCELLENT STUDY
HIGHLIGHTED EARLIER, THAT THE
PARENTS DESCRIBED DIFFERENCE NOT
JUST IN THE PHYSICIANS TAKING
CARE OF PATIENTS BUT EVERY
SINGLE PERSON WHO INTERACTED
WITH THEM INCLUDING PHYSICIAN,
NURSES RESPIRATORY THERAPIST,
PHYSICAL OCCUPATIONAL THERAPISTS
ACROSS THE ENTIRE CARE SPECTRUM
THAT THEY EXPERIENCE WHILE IN
THE NICU. FOR YOU THINKING OUR
APPROACH, TO CARE IS ESSENTIAL
TO TRY TO ADDRESS THIS MOVING
FORWARD.
>> RAISE SENSITIVITY. AT THE
OTHER END HOW MUCH CAN WE HELP
IN TERMS OF HOW WE EVALUATE
RESEARCH FINDINGS AND THE PEER
REVIEW PROCESS TO MAKE SURE THAT
PEOPLE HAVEN'T FALLEN DOWN TO
THESE MADE FALSE ASSUMPTION?
A LOT OF ICU CARE IN GENERAL IS
USING GREATER DEGREES OF MACHINE
LEARNING EXCUSE ANALYSIS TO
MANAGE HUGE AMOUNTS OF DATA THAT
WE RECEIVE ABOUT OUR PATIENTS.
MACHINE LEARNING ALGORITHMS, IT
REQUIRES THIS INTENTIONALITY
THAT IN RESEARCH PLAN OR PROJECT
IDEA, THAT THERE HAS BEEN
INTENTIONAL EFFORT TO IDENTIFY
SOURCES OF BIAS AND INCORPORATE
INTO THE MODEL. DURING THE TALK
ONE AREA IS OVERREPRESENTATION.
IN THE PAST TARGET PATIENT
ENROLLMENT TO MATCH POPULATION
PERCENTAGES IF THE POPULATION AT
YOUR INSTITUTION HOSPITAL OR
REGION IS 15% AFRICAN AMERICAN
POPULATION, HAVING 15% AFRICAN
AMERICAN IS OPTIMAL TARGET BUT
IT ISN'T BUT NUMBERS ARE TOO
SMALL TO TRY TO POTENTIALLY
DOUBLE THAT ENROLLMENT.
INTENTIONAL RECRUITMENT, OR
INCLUSION OF THESE VARIABLES AND
MODELS TO MAKE SURE THEY ARE NOT
MISSED.
>> IT IS IMPORTANT, VALIDITY AND
GENERALIZABILITY OF OUR MODELS
THAT WE ARE INCLUDING DIVERSE
GROUPS AND, NOT JUST SUPERFICIAL
MATCHING BY THE SES WHICH WE CAN
GET, NOT REALLY -- AND YOU THINK
THAT SOME OF THESE DISPARITIES
FEED INTO THE ISSUES OF HOW
PEOPLE CAN -- HOW FAMILIES
CONTRIBUTE OR DECIDE TO GO INTO
SUPPORTING CLINICAL TRIALS. DOES
THAT FEED INTO THIS?
>> ABSOLUTELY. THERE ARE FACTORS
THAT CONTRIBUTE TO WHETHER
FAMILIES ARE INTERESTED IN EVEN
HEARING ABOUT RESEARCH, IT IS
NOT UNCOMMON FOR OUR RESEARCH
COORDINATORS MERELY GO INTO THE
ROOM TO TALK TO A FAMILY ABOUT
PARTICIPATING IN ONE OF OUR
STUDIES. AND IMMEDIATELY BE SENT
AWAY. IT DOESN'T MATTER WHAT THE
CONTENT OF THE STUDY OR
OBJECTIVES OR AIMS ARE, JUST A
CONCEPT OF RESEARCH IN GENERAL
IS SOMETHING THEY ARE NOT
INTERESTED IN. THERE ARE MANY
FACTOR, RACE IS CERTAINLY A COME
PENT OF THAT. WE DISCUSSED THIS
IDEA THAT CAME UNIVERSITY OF
WISCONSIN AREA DEPRIVATION AND
WHICH IS NUMBER QUANTIFIES A LOT
OF FACTORS THAT GO INTO THE
ENVIRONMENT WHICH FAMILY COMES
FROM, ALL WHICH INFLUENCE ACCESS
TO MEDICAL CARE LOCALLY
PARTICULARLY WHO ARE DEALING
WITH CENTERS LIKE ALL OF OURS
THAT ARE TERTIARY REFERRAL
CENTERS WHICH MAYBE HOURS AWAY
FROM WHERE PEOPLE LIVE AND
FREQUENTLY NICUs THAT PARENTS
ARE NOT PRESENT, BECAUSE THEY
CAN'T BE, THEY LIVE TOO FAR
AWAY, THEY CAN'T BE THERE, THEY
HAVE CHILDREN, JOBS AND CAN'T BE
THERE THE WAY THEY WANT TO BE.
THAT PRESENCE OR ABSENCE IS
ANOTHER FACTOR WHICH INFLUENCES
THE WAY THAT MEDICAL STAFF
PERCEIVE THE FAMILY OR THE
PARENTS AND GUIDE THEIR E
DECISION MAKE MAKING.
>> LOOKING FOR INTERNAL
POTENTIALLY GENETIC OR
PHYSIOLOGIC DIFFERENCES IN SOME
OF THE ANSWERS EXTRAIN SICK
FACTORS AND SOCIO POLITICAL
ISSUES. CIRCLING BACK TO SOME
OF THE EARLIER TALKS THERE'S
COMMENTS VARIOUS COMMENTS OF
PEOPLE ABOUT EARLY
INTERVENTIONS, IS AN AREA A LOOF
STUDIES OUT THERE, STACEY HOW DO
YOU REALLY TRY TO PROMOTE EARLY
AGGRESSIVE ENTERVENGES BORDERING
ON FIRST DIAGNOSE, BECOME
PARENTS FIRST BECOME AWARE SO
HOW DO YOU DEAL WITH RECRUITMENT
ISSUES AND NOTIFYING GETTING
THESE PEOPLE IN TOUCH WITH EARLY
STUDIES WHEN IT IS FAIRLY AT
EDGE OF DIAGNOSIS.
>> ONE OF THE IMPORTANT PIECES
IS SETTING THE STAGE FOR WHY WE
TREAT DEVELOPMENT DIFFERENTLY
THAN WE TREAT OTHER CONDITIONS
THAT WE TRYING TO PREVENT. WE
TRY TO PREVENT DIABETES, WE
TREAT CEREBRAL PALSY WE DON'T
TRY TO PREVENT KIDS FROM HAVING
SOME OF THESE DEFICITS OR DELAYS
MOST WHAT WE DO IS TWITE SEE IF
THEY HAVE IT AND DEAL WITH IT.
IF I CAN SUPPORT A FAMILY, AND
YET THE FAMILIES ARE TO A POINT
THEY CAN SUPPORT THE CHILD MORE
EFFECTIVELY IN THE FIRST THREE
MONTHS OF LIFE, THEN THE FAMILY
CAN RUN WITH IT. AND REALLY
KEEP SUPPORTING THE CHILD
DEVELOPMENT AND THAT IS A HUGE
COST SAVINGS. IF THAT CHILD
NEVER NEEDS INTERVENTION OR
NEEDS LESS INTERVENTION. OVER
TIME. SO IT IS NOT THE
SUGGESTION THAT WE SHOULD PUT
EVERY CHILD IN CIMT IN THE NECU
THEY ARE GOING TO HAVE SIX HOURS
OF THERAPY A DAY, IT IS MAYBE
FIVE TO TEN VISITS OVER THE
FIRST THREE TO SIX MONTHS OF
LIFE, TO REALLY SUPPORT A
FAMILY. THE OTHER THING WE NEED
TO CONSIDER IS ALTERNATIVE
OPTIONS HOW TO PROVIDE THOSE
INTERVENTIONS. WE NEED EVIDENCE
FOR TELEMEDICINE WORK THE SAME
WAY, PROVIDE SERVICES IN PERSON.
THAT WILL HELP US DEAL WITH THE
HEALTH DISPARITY ISSUES,
POSSIBLY THOUGH WE KNOW
TELEMEDICINE HAS ALSO ISSUES
PANDERS HEALTH DISPARITIES BUT
IF YOU HAVE ACCESS TO SOME OF
THESE APPROACHES, WHERE YOU CAN
OFFER THE PARENTS EITHER OR, OR
SOME COMBINATION OF THE TWO,
THAT MAYBE YOU CAN PROVIDE BEST
ACT TEASES POSSIBLE. FOR THAT.
THE OTHER THING I WANTED TO
POINT OUT, THAT RELATED TO THIS
IDEA OF RACEETH NITTY IS THAT WE
DON'T HAVE ENOUGH PEOPLE --
ETHNICITY WE DON'T HAVE ENOUGH
PEEP OF COLOR IN THE RESEARCH
TEAMS. WE NEED PEOPLE WHO SPEAK
THE NATIVE LANGUAGE OF
PARTICIPANTS, AND WHO LOOK LIKE
THEM TO DO THE RECRUITMENT. AND
TO BE THE FRONT LINE INTERACTING
WITH FAMILIES, BECAUSE THAT IS
HOW YOU GET PEOPLE TO ENGAGE. IS
TO SAY WE HAVE PEOPLE WHO HELP
YOU AND SUPPORT THE QUESTIONS
YOU HAVE THAT RELATE TO YOU. WE
SEE ENROLLMENT DRASTICALLY
INCREASE WHEN WE MADE SURE
RESEARCH TEAM IS ADEQUATELY
DIVERSE.
>> GREAT POINT LOT OF LEVELS
SOMEBODY IN THERE THAT BUILDS
TRUST EVEN IN TERMS OF MENT
MENTORING, RESEARCHERS HAVING
THE ROLE MODELS OUT THERE. THANK
YOU FOR BRINGING THAT UP.
KATHERINE IN YOU ARE YOU STUDY
OF COMMUNICATION, OUT OF YOUR
FOCUSING MORE ON SPEECH AND
LANGUAGE, BUT SOME BROUGHT UP
THE IDEA OF HEARING LOSS, HOW
MUCH DOES THAT TRUMP IN CP? AND
FIGURE INTO YOUR STUDY? YOU
DON'T WANT TO EXCLUDE THEM, YOU
WANT TO SUPPORT THEM.
>> ABSOLUTELY. SO PARENTS PLAY A
CRITICAL ROLE IN SUPPORTING
SPEECH AND LANGUAGE DEVELOPMENT
FOR CHILDREN. EARLY INTERVENTION
BIRTH TO THREE WE ARE WORKING TO
SUPPORT PARENTS AND TEACH HOW TO
FOSTER ENTERA AND ENGAGEMENT,
HERBAL SPEECH PRODUCTION,
BABBLING PRE-VERBAL LINGUISTIC
FORMS OF COMMUNICATION AS WELL.
SO AGAIN, IT IS SUPPORTING
DEVELOPMENT ALL ALONG THE
CONTINUUM AS STACEY SAID. I
COMPLETELY AGREE WITH EVERYTHING
SHE SAID IN COMMUNICATION
MODALIMODALITY. IN TERMS OF SECY
ISSUES DISARTHEROIA MOTORRISH
ISSUES IS THERE A CORRELATION
BETWEEN FEEDING? THAT INVOLVES
THE SAME MOTOR SO USING
CONNECTIONS?
>> FOR SURE. WHEN WE THINK ABOUT
SPEECH MECHANISM IT IS USING THE
SAME MUSCLES AND STRUCTURES FOR
DIFFERENT FUNCTIONS SO WE DO
SOMETIMES SEE DIFFERENCES.
BETWEEN SPEECH AND FEED DOMAIN
BUT WILL IS OVERLAP, AN AREA WE
NEED MORE RESEARCH. SO YOU CAN
HAVE FEEDING PROBLEMS AND NOT
HAVE SPEECH MOTOR DIFFICULTIES
SO WE HAVE WHOLE POPULATION OF
KIDS THAT HAVE FEEDING ISSUES
THAT ARE NOT NEUROLOGICAL IN
ORIGIN OR MOTOR IN ORIGIN. AND
WE HAVE KIDS WITH FEEDING
PROBLEMS VERY MUCH DUE TO ORAL
MOTOR DIFFICULTIES SO THAT
DIFFERENTIATION IS REALLY TRICKY
AN AGAIN THE OVERLAP BETWEEN
MATURATION AND DEVELOPMENT
VERSUS THE NEUROLOGICAL DAMAGE
TO THE SYSTEM WE HAVE A LOT OF
TROUBLE SEPARATING IN EARLY
EARLY DEVELOPMENT. THERE IS A
GREAT NEED FOR WORK THAT LOOKS
AT THESE INTERSECTION SPEECH
DEVELOPMENT AND FEEDING
DEVELOPMENT PARTICULARLY ORAL
PHASE FEEDING ISSUES.
>> I'M SHIFTING TO DIANE'S TALK,
THERE WAS A QUESTION ABOUT THE
APPLICATION OF SOME OF YOUR
APPROACHES TO LOWER EXTREMITY
TESTS. MOTOR CORTEX AND HOW YOU
LOOK AT LOW EARLY EXTREMITY
TESTS AND BECAUSE THEY GO DEEPER
IN THE BRAIN. HOW YOU DEAL WITH
THAT?
>> GREAT QUESTION. ANGLE
REPRESENTATIONS BREAK DOWN
CENTER SO EEG AND YOURS ARE BEST
CORTICAL SURFACE. EEG SOURCE --
WHAT WE CAN SHOW IS THE DO ANKLE
AS WELL AS RISK. WE DON'T KNOW
IF RIGHT HEMISPHERE OR LEFT
HEMISPHERE. DATA FOR THOSE IT IS
MORE CHALLENGING TO PROCESS
BECAUSE WE ALSO HAD VERY LARGE
ARTERY IN MIDDLE OF THE HEAD
WHICH IS A PROBLEM WE HAVE TO DO
TECHNIQUES ENGINEERING
COLLEAGUES BE ABLE TO HELP US
WITH THESE THINGS TO GET THROUGH
CHALLENGES TO STUDY IF WE WANTS
-- WHAT WE WANT TO STUDY.
>> INTERESTING QUESTION POSTED
ABOUT USING ROBOTS IN TRAINING
MODE AND TEAL WITH CP
PLASTICITY, VERSUS CP DYSTONIA,
DIFFERENT GOALS THERE.
>> THAT WAS A GREAT QUESTION.
THINK ABOUT DYSTONIA WHERE THESE
CHILDREN HAVE SUDDEN CHANGE IN
POSTURE, MAKES A FIXED POSTURE
WHEN YOU TALK ABOUT POSITION
CONTROL THOSE ARE DISASTERS
BECAUSE THEY ARE TRYING TO
ENFORCE A TRAJECTORY AND THOUGH
THEY HAVE THE SAFETY, THEY WON'T
PUSH PAST CERTAIN LIMIT IT WON'T
WORK WELL WHEREAS THE MORE
INTEGRATED APPROACHES WHERE YOU
INJECTING TOUR OR EVEN MORE
IMPORTANTLY TRYING TO USE FES
CERTAIN TIES IF YOU HAVE A
STRONG DYSTONIC RESPONSE, FES IF
YOU HAVE SPINAL CORD BIG
ASSUMPTION CP YOU CAN INHIBIT
THAT ANTAGONISTIC MUSCLE
DYSTONIA SO FES SOLUTIONS WORK
BEST FOR THESE KIDS BUT THAT IS
ANOTHER CHALLENGE, I DON'T THINK
ANYBODY IS DEALING WITH YET.
>> SOMEBODY ELSE POST AD
QUESTION ABOUT SOME OF YOUR
BRAIN WAVE FREQUENCY LOOKING AT
TOTAL GROSS POPULATIONS OF
FIRING RATES AND THE CHANGE YOU
SEE BETWEEN INFANTS AND OLDER
KIDS IN TERMS OF THE EVOLUTION
OR MOVEMENT OF THE POWER OF THE
WAVES. HOW DO YOU INTERPRET
THAT? WHAT DOES THAT MEAN TO YOU
AS CLINICIAN SEEING THE CHANGES
OR NOT SEEING IN SOME KIDS?
>> SO WHAT WE ARE FINDING IS
THERE ARE NORMAL PATTERNS OFFER
CLINICAL MATURATION. WE DO ALL
OF OUR STUDIES IS AGE MATCH OR
IN THE BABIES WE MATCH THEM BY
THEIR MOTOR ABILITIES IN SOME
CASE LIKE HAVE THEY STARTED
WALKING OR NOT, THOUGH THEY CAN
BE DIFFERENT AGES SO A LOT OF
CHALLENGES TRYING TO STUDY KIDS
AND UNDERSTAND WHAT ARE THE
DIFFERENT FACTORS THAT ARE
DIFFERENTIATING THOSE BUT WE DO
SEE WE DO SHOW IS THERE IS A
MATURATION IN THESE MOTOR
FREQUENCYPS, THEY TEND TO BE
DELAYS IN KIDS WITH CP AND TEND
TO BE LOWER NOT PROCEEDING AS
QUICKLY. WHICH IS REALLY
INTERESTING BECAUSE I THINK
OTHERS KATHERINE TALKED ABOUT
THIS, THERE IS A HOE DEVELOPMENT
TRAJECTORIES ARE DIFFERENT IN
DIFFERENT POPULATIONS BUT YOU
DON'T -- FIRST YOU HAVE TO
UNDERSTAND WHAT THE NORMAL
TRAJECTORY IS AND NORMAL
RESPONSES YOU SEE.
>> ANOTHER QUESTION POSTED WHICH
MAYBE WE COULD STEP BACK AND
HAVE OTHER PANELISTS, THE
QUESTION ABOUT WHETHER WE COVER
WOMEN'S HEALTH ISSUES
ADEQUATELY. WONDER IF OUR OTHER
OCHER IS A OR SOMEBODY ELSE JUMP
IN TO PROVIDE CONTEXT ABOUT
WOMEN'S HEALTH INTERSECTING WITH
CEREBRAL PALSY RESEARCH?
>> SURE. I DON'T KNOW IF I CAN
GET ON THE MAIN SCREEN.
>> WE HEAR YOU. THAT'S FINE.
>> I WANTED TO POINT OUT THAT
NICHD HAS A LONG HISTORY OF
SUPPORTING RESEARCH IN PREGNANCY
AND REPRODUCTIVE HEALTH TARGETED
FOR WOMEN AND PEOPLE WHO HAVE
UTERUSES AND EXPERIENCE
PREGNANCY. LAST NOVEMBER WE HAD
A WORK SHOP ON PROMOTING
RESOURCES, FOR THE DEVELOPMENT
OR THE PROCESS OF TRANSITIONING
LIEU ADOLESCENCE AN RESOURCES
TARGETING AREA. REPRODUCTIVE
HEALTHCARE FOR PEOPLE WITH
DISABILITIES AS THEY TRANSITION
FROM ADOLESCENCE TO ADULTHOOD.
SO YOU CAN GO BACK AND WATCH
THAT WORKSHOP WHICH WE HELD IN
NOVEMBER IN COORDINATION WITH
NIDLER OUR SISTER AGENCY AT HHS.
WE FOLLOWED THAT UP WITH A
REQUEST FOR APPLICATIONS IN
MARCH. WE DO HAVE A SERIES OF
AWARDS THAT WE HOPE TO MAKE IN
FISCAL YEAR 23. WE ARE TALKING
ABOUT DISABILITY BROADLY BUT
CEREBRAL PALSY IS INCLUDED IN
THAT AND IS HIGHLIGHTED. I WANT
TO -- RACHEL FROM CEF WILL BE
PUTTING SOME RESOURCES THEY HAVE
DONE INCREDIBLE JOB OF PUTTING
RESOURCES OUT THERE FOR WOMEN AS
THEY TRANSITION.
>> RACHEL, DO YOU WANT TO ADD OR
YOU WANT TO POST IT FOR THE
GROUP TO SEE?
>> HAPPY TO ADD ANYTHING. WE DID
A WOMEN'S HEALTH STUDY FROM 2016
TO 2019. AND LOTS OF RESOURCES
WERE DEVELOPED ACROSS THE LIFE
SPAN. SO IT WAS FOR ADOLESCENCE
THINKING SEXUAL HEALTH
GYNECOLOGICAL HEALTH,
PREPRODUCTIVE HEALTH, BREAST
HEALTHCARE. IN PARTNERSHIP WITH
SHELLEY (INAUDIBLE) LAB, BOSTON
CHILDREN'S HOSPITAL, COLUMBIA
UNIVERSITY AND UCLA MEDICAL
CENTER. ALL THOSE PIECES CAN BE
FOUND ON CP RESOURCE.ORG, I WILL
MAKE SURE THAT I POST AND ANSWER
IN THE Q&A SECTION FOR ANYBODY
INTERESTED. THERE HAS BEEN
SUBSTANTIAL WORK DONE ON THIS,
BUT AS THERESA SAID WILL IS
EXCITING WORK ABOUT TO BE DONE
AS WELL. SO GREAT QUESTION.
SOMETHING THAT NOT JUST WOMEN'S
HEALTH ROUTE WE NEED TO MAKE
SURE MEN'S HEALTH AS WELL IS
PRIORITY HERE TOO. EXCITINGLY WE
HAVE GOT A PROJECT WITH MARK
PETERSON LOOKING AT PREVENTIVE
HEALTHCARE FOR ADULTS. VERY
THRILLED THAT QUESTION WAS ASKED
BECAUSE WE NEED TO MAKE SURE
THOSE ELEMENTS ARE FOCUSED ON
TOO.
>> NATELY YOU WANTED TO ASK A
QUESTION TO DIANE ABOUT SOME OF
THE ALPHA BAND WAVES? AND
EVOLUTION?
>> YES SHE ANSWERED. THANK YOU
SO MUCH.
>> OKAY. THESE
>> THANK YOU. I APPRECIATE IT.
IT HAD TO DO WITH MATURATION OF
ALPHA OVER TIME. AND HOW YOU CAN
TELL THIS IS ACTUALLY A
SOMATOSENSORY OSCILLATION RATHER
THAN SOMETHING ELSE. SHE
ACTUALLY ANSWERED IT IN THE BEST
POSSIBLE WAY WHICH IS --
>> VERY GOOD. PART OF THIS
WORKSHOP IS NOT ONLY TO INSPIRE
PEOPLE OUT THERE LOOKING FOR
RESEARCH VERY IMPORTANT.
EXCITING RESEARCH QUESTION BUT
ALSO TO SHOW SUPPORT FOR THE
FAMILIES THAT ARE -- HAVE
CHILDREN WITH CP SO WE ARE
TRYING TO TALK ABOUT PARTICULARS
AND BROADLY AT THE SAME TIME.
LET ME GO BACK TO OTHER
QUESTIONS WE HAD THE QUESTION --
THERE WAS A QUESTION - FOR
ZACHARY ABOUT UNDERDIAGNOSIS OF
CP ESPECIALLY CERTAIN SUB TYPES
OF CP AND -- IN BLACK
POPULATIONS.
>> I CAN DEFINITELY SPEAK TO THE
EARLY STAGES OF THAT. ONE OF THE
MAJOR CHALLENGES THAT WE DEAL
WITH MANY THE NICU IS OUR LACK
OF PREDICTIVE ABILITY. WE IN
GENERAL ARE FAIRLY GOOD WITH
NEGATIVE PREDICTIVE VALUE, WE
CAN PUT MRIs AND PIECES OF
INFORMATION ABOUT A CLINICAL
COURSE TOGETHER TO SUGGEST THAT
THERE WON'T BE OUTCOME. BUT THE
REVERSE IS REALLY PROBLEMATIC OR
PREDICTIVE VALUE FOR MRI SCORING
SYSTEMS OUT THERE, INCLUDING
SOME OF THE QUANTITATIVE ONES
ARE REALLY CHALLENGING. ONE
POTENTIAL STRATEGY IS SOMETHING
THAT INCLUDES DATA FROM MANY
TYPES OF SOURCE, SOMETHING THAT
IS NOT JUST IMAGING ONLY OR
CLINICAL ONLY BUT INCLUDES ALL
SCALES OF DATA OF THOSE PLUS
SOCIOECONOMIC AND RACIAL
COMPONENTS TO TRY TO GIVE THE
BEST PREDICTION. IT IS STILL
SOMETHING THAT IS GOING TO BE A
CHALLENGE FOR A LONG TIME AND
REQUIRE A LOT OF THE EXPERTISE
OF MANY OTHER FOLKS TALKED TODAY
PICKING THAT UP FROM THERE
TAKING FORWARD INTO CHILDHOOD.
>> MARK THERE ARE COUPLE OF
QUESTIONS PEOPLE POTED ABOUT THE
DIAGNOSIS OF PAIN AND -- POSTED
ABOUT PAIN AND SUPPORTIVE MENTAL
HEALTH ISSUES SO LET ME ASK THE
QUESTION OF -- FOR THE
CLINICIANS OUT THERE SUPPORTING
KIDS AND FAMILIES AND ADULTS
WITH CP, DO THEY UNDERSTAND,
HEAR THE NEEDS FOR PAIN
TREATMENT OR DO THEY KIND OF ON
FEW SKATE IN TERMS OF YOU HAVE A
BROADER CONDITION AND DOESN'T
GET AD -- OBFUSCATED. DOESN'T
GET ADEQUATE SUPPORT?
>> ARE YOU SAYING THIS PAIN
ADEQUATELY ADDRESS IN CLINIC
ESPECIALLY ADULTS WITH CEREBRAL
PALSY?
>> THAT IS SOMEWHERE I'M GOING.
SOME OF THE GERIATRICIANS GET
CRITICIZED THAT THEY ARE NOT
REALLY HEARING THE NEEDS OF
OLDER PEOPLE IN THEIR PRACTICE
AND I'M ASKING WHETHER HOW WE
SUPPORT PEOPLE THAT HAVE VARIOUS
CLINICAL ISSUES WITH CP WHEN
THEY HAVE SPECIFIC PAIN ISSUES
ARE THEY HEARD AND TREATD?
>> YEAH. I THINK BECAUSE PEOPLE
WITH CP INHERENTLY HAVE HAD PAIN
PROBABLY THEIR ENTIRE LIVES IT
BECOMES NORMALIZED BUT IT ALSO
SEEMS AS THOUGH WHEN THEY BRING
PAIN UP IT IS ALMOST BRUSHED
UNDER THE RUG IN MANY CASES. SO
I DEFINITELY WOULD LIKE FOR
PEOPLE TO ADVOCATE FOR
THEMSELVES. THERE WAS EVEN ONE
COMMENT IN THE CHAT THAT SAID
YES, I HAVE PAIN. THIS IS A
NORMAL THING FOR ADULTS LIVING
WITH CP. IF YOU ASK A LOT OF
INDIVIDUALS THEY WILL SAY NO MY
PAIN IS FINE, I DON'T HAVE PAIN.
BUT IT IS BECAUSE THEY HAVE HAD
PAIN THEIR ENTIRE LIVES IT IS
IMPORTANT WE START TO UNDERSTAND
THE MECHANISMS OF PAIN ARE NOT
SO SIMPLE AS IT COMES FROM
SPASTIC MUSCLE OR JOINTS OR
CONTRACTIONS BUT OTHER TYPES OF
PAIN THAT HAVE BEEN HISTORICALLY
JUST NOT STUDIED A T ALL IN THIS
POPULATIPOPULATION. SO WE CAN LM
OTHER POPULATIONS THAT
EXPERIENCE WIDESPREAD PAIN. I
THINK THAT SHOULD HELP TO INFORM
TREATMENTS THAT ALIGNED WITH THE
PHENOTYPE OF PAIN. RATHER THAN
JUST SORT OF THE COPY PASTE PAIN
AS PAIN AND WILL TREAT THE WAY
WE TREATED IT. THERE ARE
CERTAINLY STREAMLINED TAILORED
INTERVENTIONS OF PAIN THAT ARE
SPECIFIC TO THE MECHANISM OF
PAIN.
>> I THINK THAT IS AN ISSUE A
LOT OF CHRONIC PHYSICAL
DISABILITIES. ACKNOWLEDGMENT AND
SUPPORT AND HOW PAIN CHANGES
PEOPLE'S FUNCTION. LEADS TO
SECONDARY ISSUES ISOLATION.
OKAY. STILL MORE DISCUSSION. I
HOPE THAT PEOPLE CAN ANSWER THE
QUESTIONS THAT ARE STILL WE
DIDN'T GET TO. ANSWER THEM
DIRECTLY. WE HAVE COME TO THE
BREAK. SO TAKE A BREAK FOR 20
MINUTES COME BACK AT 1:50.
EASTERN STANDARD TIME TO GET TO
OUR FINAL SESSION ON WORK FORCE
AND RESEARCH DEVELOPMENT. WITH
THAT, THANK YOU, IT WAS A GREAT
MORNING SESSION. LOOK FORWARD TO
THE FINAL PART OF OUR DISCUSSION
WE ARE READY FOR THE FINAL
SESSION. THE ANCHOR LEG OF IF
YOU WILL. IT'S A FANTASTIC
CONFERENCE UP TO THIS POINT AND
WE WILL FINISH WITH STREAM PLAN
PRIORITY AREA 3 WHICH IS WORK
FORCE AND RESOURCE DEVELOPMENT.
THIS IS AN AREAS OF PARTICULAR
INTEREST TO NIH NINDS AND NICHD
AS WELL. OUR FIRST TALK IS GOING
TO BE BY DR. SHARON RHAMEY WHO
WILL TALK TO US ABOUT CLINICAL
TRIALS CEREBRAL PALSY AND
TRAINING CEREBRAL PALSY
RESEARCHERS. OUR NEXT IS GOING
TO BE DR. KAT STEELE FROM
UNIVERSITY OF WASHINGTON WHO IS
GOING TO BE TALKING ABOUT
MOBILIZING FOR CEREBRAL PALSY
THE SCIENCE TEAM AND TECH TO
MOVE FORWARD. THAT IS FOLLOWED
BY DOCTORED THERESA MOULTON,
NORTHWESTERN COMMON DATA
ELEMENTS AND PAUL GROSS,
CEREBRAL PALSY RESEARCH POLICY
NETWORK WHO WILL TALK REGISTRIES
IN CEREBRAL PALSY RESEARCH
PRESENTING BOTH INVESTIGATOR
PERSPECTIVE AS WELL AS THE
PATIENT ADVOCACY FAMILY AND
RESEARCH PARTICIPANT
PERSPECTIVES. SO WITH THAT, WHY
DON'T WE START THE VIDEOS
PLEASE.
>> IT IS AN HONOR TO BE HERE
TODAY. I WANT TO TALK ABOUT
FACILITATING CLINICAL TRIALS
RESEARCH AND TRAINING FUTURE
INVESTIGATORS. I WOULD LIKE TO
BEGIN ACKNOWLEDGING WHAT I
CONSIDER THE CRITICAL ROLE ON
NIH CENTERS AND
MULTI-DISCIPLINARY TRAINING
PROGRAMS. THE CENTERS HAVE HAD A
PHENOMENAL TRACK RECORD, THEY
SUPPORT PILOT STUDIES, NEW
INSTRUMENT DEVELOPMENT,
TECHNOLOGY AND IT ADVANCES, THEY
ASSIST IN DATA ANALYSIS, AND
ABOVE ALL THEY BRING TOGETHER
CREATIVE COLLABORATIVE
INDIVIDUALS, CLINICIANS AND
SCIENTISTS WHO CREATE OUR TEAM
SCIENCE. THE TRAINING PROGRAMS
AND INDIVIDUAL RESEARCH CAREER
AWARDS ALSO HELP ADVANCE OUR
FIELD. RECIPIENTS OF THESE
AWARDS BENEFIT FROM NIH SUPPORT
AND CONNECTIONS TO OTHERS AND
REALIZE THE HONOR OF THOSE
SUPPORTS AND I THINK IT
ENCOURAGES EXPIRATION INNOVATION
AND PRODUCTIVITY. AS EPI PAIR
FOR THIS I REALIZE SINCE 1972, A
50 YEAR WINDOW I HAVE
CONTINUOUSLY SUPPORTED BY NIH
AND MANY OF THOSE YEARS I HAVE
BEEN IN A MULTI-DISCIPLINARY
CENTER AND I RECEIVED A CAREER
AWARD. WHAT HAVE I LEARNED FROM
THE RESEARCH THAT I AND MANY
OTHERS HAVE DONE? IN TWO THEMES
EMERGED AS I WAS THINKING ABOUT
THIS AND PREPARING FOR THE TALK,
AND THE FIRST IS WE HAVE VASTLY
UNDERESTIMATED HUMAN POTENTIAL
TO CHANG CHANGE. THERE ARE TOO Y
CHILDREN WE THOUGHT COULDN'T
BENEFIT OR COULDN'T BENEFIT MUCH
FROM TREATMENT. WE HAVE BEEN
WRONG. SECONDLY WE NAIVELY,
NAIVELY HAVE OVERESTIMATED HOW
RECEPTIVE AND WILLING THE
TRADITIONAL HEALTHCARE SYSTEMS
WOULD BE TO TAKE OUR RESEARCH
FINDINGS AND IMMEDIATELY AND
EFFECTIVELY PUT THEM IN TO
ACTION. SO WHAT I WOULD LIKE TO
DO TODAY IS SHARE A SCIENTIFIC
CASE HISTORY OF A TEAM THAT
STARTED OFF AS A VERY SMALL TEAM
HAS GROWN OUT TO BE A BIG TEAM
ENGAGED IN PEDIATRIC CONSTRAINT
INDUCED MOVEMENT THERAPY. IT
BEGINS MORE THAN 20 YEARS AGO
WHEN SOMEONE DR. STEPHANIE NOW
DECIDED TO GO TO GRADUATE SCHOOL
AFTER 11 YEARS OF WORKING WITH
CHRONIC ADULT STROKE PATIENTS IN
ONE OF THE EARLIEST EXPLORATIONS
OF CONSTRAINT INDUCED MOVEMENT
FOR ADULTS. SHE WANTED TO ADAPT
PROCEDURES FOR CHILDREN AND SHE
AND I AND ANOTHER Ph.D.
STUDENT BEGAN TO WORK TOGETHER
AND FOR STEPHANIE'S MASTERS
THESIS OUR FIRST CASE HISTORY
THEY TREATED AN INFANT THEN GAVE
HER A SECOND TREATMENT, THIS GOT
PUBLISHED AND THIS CHILD, LIBBE
WE USED HER NAME WITH HER
PERMISSION AND HER FAMILY, WAS
TRANSFORMED IN P A MATTER OF 15
DAYS, SIX HOURS OF TREATMENT A
DAY FROM SCARCELY USING ONE SIDE
OF HER BODY, THE SIDE THAT WAS
HELPPURITIC TO USING IT TO REACH
GRASS RELEASE, SHE BEGAN WEIGHT
BARING, SHE BEGAN TO COME MORE
SOCIAL, SHE WAS AT FIRST A
CHALLENGING CHILD TO WORK WITH.
BY SECOND TREATMENT SHE WAS ABLE
TOWSACK WITH WALKER TO TRY TO
MOVE UPSTAIRS SHE WAS TALKING,
BECAME MUCH MORE ENGAGED IN SO
WE SAW A RAPID BIG CHANGES AND
WE SAW WHAT WE LABELED BACK THEN
SPILL OVER EFFECTS AND WE MOW
CALL THEM MULTI-DOMAIN. YOU
OFTEN SEEK TO CHANGE ONE THING
AND YOU CHANGE MORE THAN THAT
ONE THING YOU ARE FOCUSED ON.
WE HEN DID THE FIRST RANDOMIZE
CONTROL TRIAL OF PEDIATRIC
CONSTRAINT INDUCED MOVEMENT
THERAPY WITH 18 CHILDREN. AND
AFTER WE FOUND OUT THAT NINE
CHILDREN RESPONDED VERY WELL WE
TOOK THE CONTROL GROUP AND
CROSSED THEM OVER TO RECEIVE
TREATMENT AND HAD A BUILT IN
REPLICATION AND FOUND THE SAME
AFFECT WITH THE CROSS OVER. WE
THEN WENT TO MULTI-SITE TRIALS
INITIALLY FUNDED WITH FOUNDATION
PARENT FOUNDATION MONEY AND
FOUND WE COULD TEACH PEOPLE
ELSEWHERE TO REPLICATE THE
TREATMENT, WE MANUALIZED IT WE
WROTE A BOOK OF THE TREATMENT
PROTOCOL TO TRAIN OTHER PEOPLE,
WE DEMONSTRATED TO OBTAIN THE
SAME AFFECTS AGAIN AND AGAIN
WHAT WE KNEW AT THAT TIME
BECAUSE PEOPLE THROUGHOUT THE
WORLD WERE TESTING THEIR OWN
VARIATIONS OF CONSTRAINT INDUCED
MOVEMENT THERAPY IS WE HAVE TO
FIGURE OUT WHAT ARE THE MOST
IMPORTANT COMPONENTS OF THE
TREATMENT PROTOCOL COMPARE TO
EFFICACY TRIALS DO THESE LIKE
TESTS IS ONE DOSAGE
SIGNIFICANTLY BETTER THAN
ANOTHER DOSAGE. WE DEVELOPED
USING A CAST FOR THE CHILD'S
MORE FUNCTIONAL UPPER EXTREMITY,
SOME PEOPLE ONLY USED AMIT TEN
OR A SPLINT WHICH IS BETTER. ARE
THEY ALL GOOD? WHAT WE LEARNED
FROM THOSE IS THAT THE HIGHER
DOSAGE REALLY MATTERS A MINIMUM
OF THREE HOURS A DAY FOR FIVE
DAYS A WEEK FOR FOUR WEEKS
COMPARED TO EVEN THREE TWO AND A
HALF HOUR SESSIONS OVER THAT
SAME DURATION. WE FOUND THAT
DIFFERENT FORMS OF CONSTRAINING
THE NON-HELPPERETIC ARM COULD
RESULT IN VERY GOOD GAINS FOR
THE CHILDREN. BUT WE DID DO SOME
LONG TERM FOLLOW-UP AND WE FOUND
OUT THAT SOME OF THE FULL
ADVANTAGES OR SEQUELAE DON'T
APPEAR UNTIL ABOUT 12 MONTHS
AFTER TREATMENT WE ALSO HAT THE
OPPORTUNITY TO LOOK AT RESEARCH
CLINICS THAT SET UP WITH A
PROTOCOL THAT FAMILIES AGREE TO
WE HAVE DATA FROM MANY CHILDREN
MORE HETEROGENOUS REAL WORLD
SAMPLE, TO SHOW THAT WE COULD
REPLICATE MAGNITUDE AND DURATION
OF AFFECTS IN A CLINIC SETTING
AS WELL AS UNDER IDEAL
CONTROLLED OR RESEARCH TRIAL
CONDITIONS. FINALLY WE NOW
LEADING HONORED CHALLENGED EVERY
DAY TO LEAD THE FIRST PHASE 3
MULTI-SITE TRIAL OF OUR FORM OF
CONSTRAINT INDUCED MOVEMENT
THERAPY FOR INFANTS WHO HAD
PERINATAL ARTERIAL ISCHEMIC
STROKE, CALLED I ACQUIRE AND YOU
CAN FIND US ON
CLINICALTRIALS.GOV AND WE HAVE
ADDED INTO THAT BOTH
LONGITUDINAL COMPONENTS WE HAVE
ADDED BIOMARKERS AND WE HAVE
APPARENT COUNCIL AS PARTNERS
HAVE THE VERY BEGINNING OF
DESIGNING THE STEADY TO WORKING
WITH US ON A MONTHLY BASIS TO BE
SURE WE CAN RECRUIT AND RETAIN
AND BE AWARE OF AND SENSITIVE TO
THE NEEDS OF THE CHILDREN AND
THEIR FAMILIES. FOR THE FUTURE
WE WANT TO CONTINUE AND
ENCOURAGE EVERYONE TO ENGAGE
PATIENTS AND FAMILIES AND
CLINICIANS IN YOUR RESEARCH. WE
HOPE THAT WE RECRUIT A MORE
MIXED SAMPLE THAT REFLECTS THE
TRUE VARIATION, WE FIND IN
CLINIC POPULATIONS, WE WOULD
LIKE TO MEASURE MORE THAN JUST
ONE OR TWO OUTCOMES BUT
ACKNOWLEDGE THAT THERE ARE MORE
AREAS OF THE CHILD'S LIFE THAT
COULD BE AFFECTED AND TO INCLUDE
THOSE MEASURES FROM ARE THE VERY
BEGINNING. WE ENCOURAGE PEOPLE
TO EXPLORE AND TRY BIOMARKERS
SUCH AS GENETIC INDICATORS OF
DOPAMINE OR NEUROPLASTICITY
MEASURES, SOME OF THE MORE
SUCCESSFUL WAYS OF IMAGING YOUNG
CHILDREN'S BRAINS BEFORE DURING
AND AFTER TREATMENT. WE ALSO
WOULD LIKE TO PLACE TREATMENT IN
CONTEXT OF CHILD'S ENTIRE LIFE
COURSE AND INCLUDE LONG TERM
FOLLOW-UP SOMETHING WE HASN'T
DONE SUFFICIENTLY AND WE
RECOMMEND FOR THE FUTURE IS THAT
WE WORK WITH HEALTHCARE
PROVIDERS AND SYSTEMS AND
NATIONAL ORGANIZATIONS, VERY
EARLY ON IN OUR CLINICAL TRIALS
SO THAT THEY WILL BE
KNOWLEDGEABLE ABOUT OUR WORK AND
BETTER PREPARED TO PUT RESEARCH
FINDINGS INTO ACTION. IN TERMS
OF IMPLEMENTATION SCIENCE WE
NEED TO ACTUALLY CONDUCT
SYSTEMATIC RESEARCH ON WHAT
TECHNIQUES WORK BEST SO THE
FINDINGS GET PUT INTO ACTION
IMPLEMENTATION SCIENCE NOW HAS
VERY STRONG AND ACTUALLY VERY
PRODUCTIVE CONCEPTUAL FRAME
WORKS TO INFORM STUDY DESIGN
DATA COLLECTION AND DATA
ANALYSIS, THE SHAME SCIENTIFIC
STANDARDS FOR RIGOR, IF YOU DO A
TRIAL OF TWO DIFFERENT
TECHNIQUES TO PROMOTE THE
IMPLEMENTATION YOU COMPARE THEIR
EFFICACY. WE NEED MULTIPLE
DISCIPLINES INCLUDING
ECONOMISTS, HEALTHCARE
ADMINISTRATORS, AND ADVOCACY
ORGANIZATIONS TON PARTNERS IN
OUR IMPLEMENTATION SCIENCE
RESEARCH. I WANT TO BE SURE WE
KNOW THIS IS NOT A SYNONYM OR
THE SAME AS CONTINUOUS QUALITY
IMPROVEMENT. THIS IS SCIENCE TO
DISCOVER WHICH STRATEGIES ARE
THE BEST TO HAVE EFFECTIVE
IMPLEMENTATION OF NEW TREATMENT
STRATEGIES. FINALLY WE WANT TO
LET Y'ALL KNOW ABOUT THE CENTER
THAT SIX OF US LEAD I'M DIRECTOR
BUT STEPHANIE DELUCA, LAUREN
LOW, AMY ARE MY FULL CO-LEADERS
IN THIS INITIATIVE. IT IS FUNDED
BY NICHD AS ONE OF SIX
INFRASTRUCTURE RESOURCE
REHABILITATION CENTERS, WE WANT
TO LEARN FROM YOU, WE WANT TO
HELP YOU AND DO EVERYTHING WE
CAN TO PROMOTE HIGH IMPACT
CLINICAL TRIALS RESEARCH AND TO
RECRUIT A MORE HETEROGENOUS
GROUP OF PEDIATRIC
REHABILITATION INVESTIGATORS AND
HERE IS OUR WEBSITE, PLEASE COME
TO US WE WELCOME YOU JOINING US
FINALLY MY DREAM IS SOON I WILL
NOT HAVE TO SAY WE UNDERESTIMATE
HUMAN POTENTIAL AND OVERESTIMATE
THE RECEPTIVITY OF THE
HEALTHCARE SYSTEM TO CHANGE. I
WOULD LOVE IT AT THE END OF OUR
TEN YEAR STRATEGIC PLAN FOR CP
RESEARCH WE CAN SEE THAT MOST
PEOPLE RECOGNIZE REMARKABLE
ABILITY OF CHILDREN TO CHANGE
AND THE HEALTHCARE SYSTEMS TO BE
WELL PREPARED TO IMPLEMENT
RESEARCH FINDINGS INTO CLINICAL
PRACTICE. THANK YOU AND IT'S
BEEN AN HONOR TO JOIN YOU TODAY
>> HI EARN I'M KAT STEELE
UNIVERSITY OF WASHINGTON AND I'M
EXCITED TO BE JOINING THIS
CONFERENCE. THIS WEEK FOR NIH.
I'M JOINING TODAY FROM
UNIVERSITY OF WASHINGTON SEATTLE
WASHINGTON WHERE WE HAVE A GREAT
MULTI-DISCIPLINARY TEAM
INVESTIGATING DIFFERENT TOOLS
AND TECHNOLOGIES TO SUPPORT
INDIVIDUALS WITH CEREBRAL PALSY.
THE TITLE OF THE TALK MOBILIZING
CEREBRAL PALSY BECAUSE
ORGANIZERS ASKED ME TO TALK A
LITTLE BIT ABOUT MY OWN CAREER
PATH AND OUR TEAMS APPROACH TO
MULTI-DISCIPLINARY SCIENCE FOR
ADVANCING OUR UNDERSTANDING OF
CEREBRAL PALSY. SO I WILL GIVE
YOU A LITTLE BIT OF AN EXAMPLE
FROM OUR OWN PROJECT AND GIVE
YOU GUY AS FEW TOOLS AND
PRODUCTS OR SIZES FOR YOUR OWN
RESEARCH.
FIRST A LITTLE BACKGROUND ABOUT
MYSELF. I AM A MECHANICAL
ENGINEER AND I WAS AN ENGINEER
TRAINED IN THE CLINIC WHILE MY
DEGREES ARE MECHANICAL
ENGINEERING I HAVE BEEN LUCKY
ENOUGH TO WORK WITH A FANTASTIC
COMMUNITY OF DOCTORS AND
THERAPISTS THROUGHOUT MY CAREER
AS WELL AS CEREBRAL PALSY
COMMUNITY. AMAZING FAMILIES. I
STARTED BY WORKING AT
(INAUDIBLE) CHILDREN'S HOSPITAL
BEFORE I WENT TO GRADUATE SCHOOL
WHICH REALLY MOTIVATED ME AS AN
ENGINEER TO GO DEEPER INTO OUR
UNDERSTANDING WALKING AND HUMAN
MOVEMENT AND ESPECIALLY OUR
UNDERSTANDING OF MOBILITY AND
CEREBRAL PALSY. DURING THE MY
TIME AT STANFORD I WAS ALSO
LUCKY ENOUGH TO CONTINUE TO WORK
AT UC PACKARD CHILDREN'S
HOSPITAL PART TIME RUNNING THEIR
ANALYSIS AND WHERE I STARTED MY
COLLABORATION WITH CHILDREN'S
SPECIALTY HEALTHCARE, ONE OF THE
OTHER EXCELLENT HOSPITALS WE
WORK WITH. AFTER GRADUATING FROM
STANFORD I WENT TO THE REHAB
INSTITUTE OF CHICAGO H AND NOW
AT UNIVERSITY OF WASHINGTON
WHERE I HAVE BEEN THE LAST --
YEARS AND CONTINUE TO
COLLABORATE AGAIN WITH MANY OF
YOU IN THIS EXCELLENT COMMUNITY
OF CHILDREN'S HOSPITALS AND
LOCAL COMMUNITIES. SO I MENTION
THAT BECAUSE AGAIN, I AM
ENGINEER BY TRAINING AND AS SUCH
I OFTEN WILL GET EXCITED ABOUT
ALL THE NEW TOOLS AND
TECHNOLOGY, I'M A HAMMER LOOKING
FOR NAIL: THERE'S COOL TOOLS
AND TECHNOLOGIES COMING OUT THAT
I FEEL LIKE A KID IN A CANDY
SHOP. WHILE THEY OFFER PROMESS
AND OPTIONS FOR INDIVIDUALS WITH
CEREBRAL PALSY, WHAT IT COMES
DOWN TO RESEARCH AND ADVANCING
UNDERSTANDING AND OPTIONS FOR
KIDS WITH CEREBRAL PALSY IN
ADULTS WITH CEREBRAL PALSY IN
OUR COMMUNITY, I WANTED TO STEP
BACK AND THINK DEEPER WHAT THE
UNDERLYING SCIENCE IS. THIS IS A
LESSON THAT I HAVE LEARNED FROM
ONE OF OUR PROGRAM DIRECTORS AT
NINDS. ESPECIALLY YOUNG
ASSISTANT PROFESSOR I COME TO
THEM WITH A BRAND NEW IDEA THAT
IS SO EXCITED ABOUT TECHNOLOGY
NEW TOOL THAT I PROMISE, NINDS
PAUSE AND SAY IT ISOR IT SOUNDS
INTERESTING BUT WHAT IF WHICH
ARE WRONG? I STOP AND SAY MAYBE
THIS TOOL TECHNIQUE DOESN'T WORK
BUT PERHAPS WORKING ISN'T THAT
EXCITING ENOUGH? AND HE REALLY
CHALLENGED ME OVER THE YEARS TO
THINK CAREFULLY ABOUT DESIGNING
SCIENCE TO LEARN SOMETHING
VALUABLE AND IMPACTFUL EVEN WHEN
YOU ARE WRONG. AND HI PUSHES THE
PIECE OF LOOK AT INVESTING THE
TOOLS AN TECHNOLOGY BUT PUT THE
FOREFRONT THE IMPORTANCE TO
UNDERSTAND THE SCIENCE AND
MECHANISMS BEHIND CEREBRAL PALSY
AND OTHER DEVELOPMENTAL
DISABILITIES TO ADVANCE NEW
TECHNOLOGY AND TOOLS AND
TRANSLATION TO THE CLINIC AND A
WAY OF LIFE. SO TODAY I HOPE TO
GIVE YOU ONE EXAMPLE OF THAT AND
APPLY TO ONE OF THE AREAS THAT
WE HAVE BEEN RESEARCHING FOR THE
LAST DECADE. NEUROMUSCULAR
CONTROL IN CEREBRAL PALSY. I
MUST HAVE BEEN HUNGRY WHEN I WAS
PUTTING TOGETHER THIS
PRESENTATION, BUT THINKING ABOUT
CORE ELEMENTS TO BUILD STUDY AND
PROPOSAL FOR OUR TEAM, I THINK
ABOUT A SANDWICH. FIRST YOU NEED
YOUR PLATE. YOU NEED FUNDAMENTAL
LEAD DRIVEN BY COMMUNITY, DRIP
BY CLINIC, THE PEOPLE WITH
CEREBRAL PALSY. WHEN IT COMES TO
THE SCIENCE YOU NEED THESE TWO
CORE PIECES, YOUR BIG PIECES OF
BREAD AND THOSE ARE THE SCIENCE
OF THE TEAM AND WITHOUT THOSE
WHATEVER YOUR COOL TECHNOLOGY OR
TECHNIQUE A STUDY AND PROTOCOL
WON'T REALLY WORK. AND IT ISEN
UNTIL YOU GET TO MIDDLE WHETHER
PEANUT BUTTER AND JELLY OR MEAT
THAT YOU GET TO THAT SPECIAL
SAUCE. FOR ME THAT SPECIAL SAUCE
IS TECHNOLOGY AND TOOLS MODDING
AND SIMULATION AND MACHINE
LEARNING BUT THAT SPECIAL SAUCE
CAN BE WHATEVER FITS YOUR
EXPERTISE AND BACKGROUND AND
KNOWLEDGE AND YOUR TEAM. THAT IS
THIS CORE SCIENCE AND TEAM WE
NEED, IN ORDER TO MOBILIZE
CEREBRAL PALSY AND PUSH FORWARD
OUR UNDERSTANDING. SO U WILL
GIVE YOU ONE EXAMPLE OF THIS FOR
OUR TEAM AND HOW WE THOUGHT
ABOUT IT. IN PARTICULAR, I WILL
GO AND START WITH WHERE MANY
NEEDS IN OUR COMMUNITY START IN
CLINICAL ANALYSIS LAB. AS A
YOUNG ENGINEER LOOKING IN THE
THE CLINICAL LAB WE HAVE KIDS
COME IN EACH DAY, ANALYZE AND
THEN SIT Z A TEAM TO TRY TO
UNDERSTAND THE BEST TREATMENT
OPTION FOR EACH CHILD. YOUR
COMMENTS LIKE SHE HAS POOR
CONTROL, HESITANT TO RECOMMEND
SURGERY OR HE HAS A REALLY GREAT
MOTOR CONTROL, GREAT AT WHATEVER
WE DO. THEN WE LOOK AT THE DATA,
WE HAVE A LOT OF DATA. WE HAVE
OUR EMG, WHICH MOST OF THE TIME
WAS IGNORED. OF BUT WHEN IT
CAME TO UNDERSTANDING THE
STRATEGY THAT WE USE TO RECRUIT
AND COORDINATE OUR MUSCLES MOTOR
DROLL, WE DIDN'T HAVE GOOD TOOLS
HOW TO QUANTIFY MOTOR CONTROL.
SO ONE BIG AREA I WOULD BE
INTERESTED IN THE LAST DECADE IS
UNDERSTANDING THE HOW WE
QUANTIFY THAT MOTOR CONTROL. GO
FROM THAT DATA IN THE LAB TO
ACTIONABLE INSIGHT THAT SUPPORT
BOTH FUNCTION IN DAILY LIFE AND
TREATMENT DECISIONS. THAT'S
WHERE WE TURN TO THE SCIENCE. IN
THIS CASE YOU HAVE A GREAT
HISTORY OF CLINICAL NEUROSCIENCE
WORK TO BUILD ON. IN PARTICULAR
WE HAVE SPOKEN TO MUSCLE
SYNERGIES BECAUSE WE HAVE AN
ACTIONABLE TOOL, FROM
NON-INVASIVE EMG, HARD TO BE
INFLECTIVE MANY THE CLINIC. AND
HIGHER WORK IN STROKE STEPPING
INFANTS, INCOMPLETE SPINAL CORD
INJURY HAVE SHOWN COMMON
PATTERNS OF SYNERGIES USED TO
CONTROL WALKING SO WE HAVE
HYPOTHESIZE THAT PEOPLE WITH
CEREBRAL PALSY USE SIMILAR
SIMPLIFIED CONTROL DONE DYNAMIC
MOVEMENT AND ACTIVITIES OF DAILY
LIVING. FURTHERMORE HYPOTHESIZE
THIS LEVEL OF CONTROL WAS
PERSONALIZED TO EACH INDIVIDUAL
AND RELATED TO WALKING FUNCTION
AND TREATMENT OUTCOME. WE HAVE A
SCIENCE THAT FUNDAMENTAL, OFTEN
TO THINK ABOUT WE ARE RIGHT,
WHAT IF THIS HYPOTHESIS IS TRUE,
THIS IS WHAT IS EXCITED ABOUT
THE SCIENCE. IF HE HYPOTHESES
WERE TRUE IT OFFERS PERSONALIZED
NEGATIVE CONTROL, USED TO ASSESS
FUNCTION INFORM TREATMENT
DECISIONS AND PERSONALIZE
MUSCULOSKELETAL MODELS AND REHAB
INTERVENTIONS. HOWEVER, ALWAYS
HAS ON MY SHOULDER RESIDING WHAT
IF YOU ARE WRONG? THAT WAS WHERE
WE HAD TO CHALLENGE OURSELVES,
DESIGNING THE PROSPECTIVE AND
RETROSPECTIVE STUDIES TO SAY
WHAT WE LEARN IF WE WERE WRONG,
HOW WOULD CUP QUANTIFY AND
CONTROL AND UNDERSTANDING HOW
SIMILAR DIFFERENT FROM STROKE
AND SPINAL CORD INJURY ADVANCE
OUR UNDERSTANDING OF THE SCIENCE
AND INFORM TOOLS SUCH AS HOW WE
USE MUSCULOSKELETAL MODELING SO
I HOUND THIS AS A USEFUL TOOL
FOR CHALLENGING ASSUMPTIONS AND
BUILDING OUR EXPERIMENTAL
DESIGN. SO IN THIS CASE WE
DISCUSS NOW OUR SCIENCE. WE ARE
BUILDING ON THE FUNDAMENTALS OF
NEUROSIGN SCIENCE USING TOOLS
WIDELY AVAILABLE WITHIN THE
CLINIC AND USED OFTEN. NOW COME
TO OTHER HEARTY PIECES OF BREAD,
THE TEAM. THIS IS WHERE -- WE
HAVE BEEN AMAZING COLLABORATIVE
TEAM, SURGEONS, THERAPISTS,
CLINICIANS. AT BOTH SPECIALTY
HEALTHCARE THAT WE HAVE BEEN
LUCKY TO WORK WITH ON THIS
PROJECT. ALSO LIKE TO SAY THE
OTHER PIECE IS TRAINING. YOU
HAVE TO MAKE SURE YOUR TEAM HAS
THE EXPERTISE TO ADDRESS THE
SCIENCE YOU ARE INTERESTED IN H.
IN MY CASE AFTER MY Ph.D. I
HAVE BACKGROUND IN
MUSCULOSKELETAL BIOMECHANICS BUT
DIDN'T KNOW AS MUCH ABOUT
NEUROMUSCULAR CONTROL SO I
DECIDED TO GO TO NORTHWESTERN TO
WORK WITH GNARL (INAUDIBLE)
SPECIFICALLY WITH THIS THOUGHT
IN MIND TO DEEPEN MY
UNDERSTANDING IT IS IMPORTANT TO
UNDERSTAND YOU CAN'T PAUSE THE
PURSUIT IF YOU CAN FIND IT FROM
OTHER PLACES TO MAKE SURE YOU
HAVE THE EXPERTISE PUSH FORWARD
WITH TEAM AND THE SCIENCE SO
FROM THIS EXCELLENT SCIENCE
TEAM, WHAT IT LOOKS LIKE FOR
KIDS WITH CEREBRAL PALSY. WHAT
THEY FOUND IN STROKE AND SPINAL
CORD INJURY YOU DID A REPRO
SPECKTIVE AND PROSPECTIVE
ANALYSES THE SYNERGIES WERE
SIMILAR WHAT WE HAVE SEEN IN
OTHER DISORDERS AND (INAUDIBLE)
TWO SYNERGIES DRIVING THE MOTION
BUT THEN WE LOOKED DEEPER TO
UNDERSTAND THE PATTERNS AND HOW
TO PERSONALIZE FOR TREATMENT.
HERE IS A MEASURE THE TOTAL
VARIANTS BY GIVEN NUMBER OF
SYNERGIES AND COMPARED TO
NON-DISABLED PEERS, IMPAIRMENT
LEVEL INCREASED, WE SAW IN
CEREBRAL PALSY CHILDREN WITH IT
HAD MORE SIMPLIFIED CONTROL,
WHEREAS SMALLISH MANY AEGISES
AND CHARACTERIZE MUSCLE
COORDINATION. WE WANT TO
TRANSLATE TO CLINIC AND FOCUS ON
FINDING MEASURES WHICH ARE
ACCOUNTEDDED FOR ONE SYNERGY AND
TRANSLATED BACK TO A SURE THAT
MATCHED CURRENT NORMS AND WE SEE
METRICS WHERE LIKE THE DEVIATION
INDEX WERE HUNDRED IS SIMILAR TO
NON-DISABLED PEERS AND TIME
POINTS ONE STANDARD DEVIATION
FROM THAT, THAT MAKE
INTERPRETATION EASIER. SIMILAR
MEASURES OF CONTROL WHICH IS
NORMALIZED. SO NOW THIS ABLE TO
HAVE EXTRA KEY IN THE LAB FOR
EXAMPLE I TAKE THE -- FOR THESE
TWO KIDS, THE GATE DEVIATION
INDEX IS MATCHED AT 74. DATA TWO
AND A HALF STANDARD DEVIATIONS
THAN PEERS. THE DYNAMIC MOTOR
CONTROL WE CAN SEE THIS LADY IS
TWO STANDARD DEVIATIONS FROM
TYPICALLY DEVELOPING CASE WHILE
YOUNG MAN IS WITHIN RANGE OF
PEERS AS WELL. SO THIS GAVE US
TOOLS TO USE IN THE CLINIC. WE
ALSO LOOKED AT TREATMENT
OUTCOMES. TO TEST THAT SECOND
HYPOTHESIS SO WHETHER TOXIN --
BOTULINUM TOXIN INJECTION OR --
WE TESTED THE RETROSPECTIVE DATA
SETS TO UNDERSTAND WHETHER OR
NOT DYNAMIC MOTOR CONTROL WAS
ASSOCIATED WITH OUTCOMES AND
ACROSS HOSPITALS DIFFERENT
SYNERGY WE FOUND THAT DYNAMIC
CONTROL WAS RELATED TO WALKING
SPEED DEVIATION DEFECTS AND
OTHER OUTCOME MEASURES BUT IT IS
IMPORTANT TO HAVE THIS BREADTH
OF TESTING IN CEREBRAL PALSY
BECAUSE WE DO KNOW CLINICAL
PRACTICE VARY SOS SO MUCH
BETWEEN DIFFERENT LOCATIONS. SO
THIS WAS OUR CORE HEARTY BREAD
PIECES THE SCIENCE TEAM, WE HAD
A SPECIAL SAUCE IN TERMS OF
ANALYZING THE EMG DATA BUT
ESPECIALLY OUR SPECIAL SAUCE TO
DIVE A LITTLE DEEPER WHERE USE
MULTIPLE APPROACHES TO TRY TO
PROVE YOURSELF WRONG. IN OUR
CASE ONE AREA WAS TURNING THE
MUSCULOSKELETAL SIMULATION WHERE
WE COULD SAY WELL, WE CAN ASK
THOSE WHAT IF QUESTIONS BUT WE
CAN'T DO EXPERIMENTALLY. SUCH AS
CAN SYNERGIES CONTROL
NON-DISABLED PATTERN? ONE OF OUR
POST DOCS ABLE TO SHOW NICELY
WHILE NON-DISABLED SYNERGIES
LIKE IN PEERS, EVEN FOUR TIMES
THREE SHY NEAR WHETHER IS YOU
COULD CONTROL NON-DISABLED GATE
PATTERN BUT WHEN WE GOT TO THE
LEVEL OF TWO SYNERGIES WHEN THAT
WAS INPUT TO THE MODEL,
DIFFERENT GATE PATTERNS EMERGE
AND WE CAN NO LONGER ATTRACT
THAT NON-DISABLED GATE PA FERN
PROVIDING SUPPORT FOR HYPOTHESIS
THAT SIMPLIFIED (INAUDIBLE)
IMPAIRS WALKING FUNCTION.
FURTHER LATELY EXCITED TO DIVE
DEEPER AND LOOKING AT NEW
METHODS NEW SPECIAL SAUCES FOR
ADDITIONAL SANDWICHES. AND
ESPECIALLY TRYING TO MOVE BEYOND
CORRELATION, AND LINEAR
REGRESSION IN ANALYSES. WHERE WE
FOUND CAUSAL MODELING AND
MACHINE LEARNING TO BE USEFUL
TOOLS FOR UNDERSTANDING THE
COMPLEXITIES OF HUMAN MOVEMENT
AND NEUROLOGIC INJURIES. WE USE
DIRECTED GRAPHSEN CAUSAL MODEL
TO FORCE US TO STATE ASSUMPTIONS
UNDERSTANDING THE RELATIONSHIPS
BETWEEN IMPAIRMENT SUCH AS
IMPAIRED MOTOR CONTROL AND
OUTCOMES AFTER TREATMENT LIKE
MULTI-LEVEL ORTHOPEDIC SURGERY.
ALSO USING MACHINE LEARNING
METHODS SUCH AS (INAUDIBLE)
REGRESSION TREES WE CAN GET AT
THOSE NON-LINEAR INTERACTING
EFFECTS THAT CAN BE CHALLENGING
TO CAPTURE. AS ONE EXAMPLE USING
THAT DATA AND ADD ATIVE
REGRESSION TREE ANALYSIS
PROSPECTIVE DATA BEFORE AND
AFTER SURGERY THEY LOOK AT AT
ROLES OF DIFFERENT IMPAIRMENT
WHETHER MOTOR CONTROL, STRENGTH
PLASTICITY, RANGE OF MOTION AND
MORPHOLOGY ON DEVIATION INDEX.
THESE POTTS AFTER THESE ANALYSES
YOU CAN SEE BOTH NON-LINEAR SO
DON'T ASSUME MANY THINGS IN THE
TREATMENT SYSTEM ARE LINEAR --
WOULD BE REPRESENTED BY THE
LINEAR REGRESSION BUT ALSO
SHOWING THE EFFECT ACCOUNTING
FOR OTHER FACTORS IN THE MODEL.
SO WE SAW DYNAMIC MOTOR CONTROL
WE MEASURE EMG WHILE WALKING BUT
SELECTIVE MOTOR CONTROL. TAKEN
DURING PHYSICAL EXAM ASKING WHY
WOULDOR CHILD TO ISOLATE
MOVEMENT AT ONE JOINT, TWO
LARGEST EFFECTS ON A CHILD
DEVIATION INDEX. STRENGTH HAD
LARGE EFFECT BUT OTHER FACTORS
LIKE PALACE PALACE AT THIS,
RANGE OF MOTION, BONE MORPHOLOGY
TIBIA AND FEMME MORAL PORTION
HAD LIFT EFFECT SO WE ARE
EXCITED ABOUT THESE NEW SPECIAL
SAUCES TO HELP DIVE DEEPER AND
UNDERSTAND INTERACTING AFFECT OF
IMPAIRMENT IN CEREBRAL PALSY. SO
THROUGH ALL THIS, NEXT QUICK
EXAMPLE OF ONE OUR SANDWICHES
AND HOW WE HAVE GONE FROM TEAM,
SCIENCE TO HOPING TRANSLATE TO
THE NEED WHICH IS A DEVELOPING
PERSONALIZED MEASURES OF MOTOR
CONTROL AND UNDERSTANDING OF
THOSE RELATED TO FUNCTION AND
TREATMENT OUTCOMES. FROM THIS
WE HAVE SEEN MOTOR CONTROL IS
SIMPLIFIED IN CEREBRAL PALSY. IT
DOES IMPAIR WALKING FUNCTION.
AND UNFORTUNATELY HAS MINIMAL
CHANGE AFTER TREATMENT. WE HAVE
SEEN CONSISTENTLY THAT SYNERGIES
ARE VERY DIFFICULT TO CHANGE.
THE GREAT THING ABOUT THESE
SANDWICHES IS THEY OFTEN LEAD TO
MORE SANDWICHES. A LOFT UNKNOWNS
CURIOUS AND EXCITED ABOUT IS
UNDERSTANDING HOW DO THESE
INFLUENCE TREATMENT OUTCOMES AND
HOW THEY SHOULD BE USED IN
TREATMENT DECISION PROCESS.
FROM THE MORE BASIC NEUROSCIENCE
PERSPECTIVE, WE THINK THEY MAY
HAVE REFLECT SPINAL CIRCUIT BUS
DO THEY REALLY REFLECT THAT
SUPER SPINAL CORTICAL SPINAL
CONTROL? CHANGED WITH TARGETED
TRAINING? AND HAVING ALTERED
CONTROL DOES THAT MAKE CERTAIN
ADAPTATIONS WE SEE IN CEREBRAL
PALSY ADVANTAGEOUS SO I GET
EXCITED BY THIS BUFFET OF
SANDWICHES AND A FEW EXAMPLES,
HOW THESE CAN THEN BUILD ZACH
AND BEN CONNER NORTHERN ARIZONA
UNIVERSITY ADDED THEIR SPECIAL
SAUCE IN THIS CASE
BIOEXOSKELETON PROVIDE
ASSISTANCE OR RESISTANCE
TRAINING. WE SUBMIT SYNERGIES
ARE HARD TO CHANGE EVEN AFTER
MULTI-LEVEL ORTHOPEDIC SURGERY,
WHICH HAVE EXTENSIVE REHAB
AFTERWARDS BUT IN THEIR PILOT,
WE SAW ALL CHILDREN INCREASE
MOTOR CONTROL AFTER TREATMENT.
THEY NOW ARE INVESTIGATING THAT
PART OF IT BUT THE HYPOTHESIS
HAS BEEN THAT TARGETED TRAINING
AND IMPROVED CONTROL. AGAIN LOOK
AT WHAT THEY WERE FROM WHAT
COMES FROM THE EXPERIENCE WE
WILL RUN FUNDAMENTAL SCIENCE HOW
CEREBRAL PALSY ADAPT CONTROL AND
RESPONSE TO EXO SKELETON AND
INTERPLAY BETWEEN CONTROL VERSUS
FUNCTION. SIMILARLY ANOTHER
SANDWICH THAT OUR TEAM IS
EXCITED ABOUT, WE ARE INTERESTED
IN NEUROPLASTICITY AND
UNDERSTANDING HOW WE CAN MODIFY
AND SUPPORT CONTROL IN
INDIVIDUALS WITH CEREBRAL PALSY.
AND LUCKY TO HAVE AN EXCELLENT
TEAM COLLABORATING WITH CHRISTY
-- FROM PHYSICAL THERAPY AND
CHUCK FROM ELECTRICAL
ENGINEERING REHAB MEDICINE WE
CAN DIVE DEEPER INTO NEW
OPTIONS. WE THINK SYNERGIES
REFLECT GREATER SPINAL CIRCUITS
VERSUS THE FLEXIBLE CONTROL WE
GET WITH FLEXIBLE MOVEMENT AND
CONTROL FROM CORTICAL SPINAL
CONTROL. WE HYPOTHESIS HAS
DEFECT IN IMPAIRED MOVEMENT AND
USING CP. THESE HAVE SEEN
STIMULATION CAN INDUCE
NEUROPLASTICITY ACTING ALMOST
LIKE A HEARING AID FOR THE
SPINAL CORD AND AMPLIFYING
DEFECT WITH NON-INVASIVE SPINAL
STIMULATION SERVE AS TOOL TO
REDUCE PLASTICITY AND IMPROVE
MOVEMENT. BUT THEN AGAIN WITHOUT
THAT ON OUR SHOULDER WE THINK
HOW TO DESIGN THESE EXPERIMENTS
WE LEARN SOMETHING EVEN IF WE
ARE WRONG, CONDUCTING THE BASIC
NEUROMECHANICS MAKING SURE WE
ARE GETTING REFLECT AND MEASURES
OF CONTROL TO UNDERSTAND SPINAL
STIMULATION AND GATE TRAINING
CEREBRAL PALSY AT DEEPER LEVEL.
CASE STUDIES SHOW PROMISING
RESULTS VERSUS STRAINING ALONE
AND TRAINING STIMULATION THE
FIRST TWO HAVE SHOW DECREASES IN
ELASTICITY.MENT SO WE CAN KEEP
BUILDING THESE SANDWICHES WITH
OUR EXCELLENT SCIENCE TEAM AND
SPECIAL SAUCES. BEFORE I CLOSE
I WANT TO MENTION ONE MORE
ASPECT OF THE TEAM, EMPHASIZED
IN THE PRIOR TALK BUT IT IS
REALLY IMPORTANT TO MAKE SURE
THESE TEAMS ARE
MULTI-DISCIPLINARY, COMMUNITY
DRIVEN, WITH PEOPLE WITH CT AS
PARTNERS AND RESEARCH
ENVIRONMENTS AND TEAMS ARE
ACCESSIBLE AND INCLUSIVE. ON OUR
SIDE ONE AREA WE HAVE BEEN
WORKING ON ESPECIALLY ADVANCING
STEM CAREERS FOR INDIVIDUALS
WITH DISABILITIES SPORED BY NSF
ACCESS ENGINEERING PROGRAM TO
SUPPORT INDIVIDUALS WITH
DISABILITIES TO PURSUE CAREERS
IN ENGINEERING AND TRAINING ALL
ENGINEERS AND PRINCIPLES
INCLUSIVE DESIGN. SIMPLY THERE
IS ACCESS TO COMPUTER STYLES BUT
WITH THESE GROUPS WE DEVELOP
KNOWLEDGE BASES FOR HOW TO
ANALYZE LAB OR YOUR DEPARTMENT
ACCESSIBLE FOR INDIVIDUALS WITH
DISABILITIES, AS WELL AS WIDE
VARIETY OF OTHER RESOURCES IN
OUR KNOWLEDGE BASE. WE HAVE
COMMUNITY OF PRACTICE FOR
PROFESSIONALS FACULTY AND
STUDENTS WITH DISABLES. YOU CAN
FINDS ALL OF THAT INFORMATION
AND MORE WANT WEBSITE. I KNOW
YOU HAVE EXCITING FASCINATING
RESEARCH YOU ARE PURSUING SO
HOPEFULLY THIS ANALOGY IS USEFUL
IF YOU HAVE THOSE KEY ELEMENTS
OF YOUR TEAM, YOUR SCIENCE AND
YOUR SPECIAL SAUCE. BUILT UPON
THAT FUNDAMENTAL LEAD. I
CHALLENGE YOU TO ASK YOURSELF
WHAT IF WE ARE WRONG AND CAN WE
DESIGN SCIENCE AND PROPERTY CAN
BELIEVE AND MAKE TWEAKS O TO IT
SO WE LEARN SOMETHING IMPORTANT
AND VALUABLE ABOUT UNDERLYING
MECHANISMS OF CEREBRAL PALSY
ADVANCE MOBILIZED FOR THE NEURO.
WITH THAT, I WANT TO THANK OUR
TEAM BOTH HERE AT UNIVERSITY OF
WASHINGTON AS WELL AS ALL OUR
AMAZING CLINICAL RESEARCH
PARTNERS AND I LOOK FORWARD TO
ANSWERING ANY QUESTIONS DURING
THE PANEL. THANK YOU.
>> HI THANK YOU FOR THE
OPPORTUNITY TO BE HERE TODAY TO
PRESENT ON BEHALF OF THE
OVERSIGHT COMMITTEE ABOUT THE
NINDS COMMON DATA ELEMENTS FOR
CEREBRAL PALSY. WE WILL TALK A
LITTLE BIT ABOUT THEIR CURRENT
STATUS, FUTURE MODIFICATIONS
COMING AND WAYS RESEARCHERS AND
CLINICIANS CAN USE THEM. WHAT
ARE COMMON DATA ELEMENTS AND
WHERE DID MY INVOLVEMENT
PARTICULARLY START WITH THIS AND
NUMBER OF OTHER MEMBERS OF
OVERSIGHT COMMITTEE? IN THE 2013
TO 2017 STRATEGIC PLAN OF THE
AMERICAN ACADEMY OF CEREBRAL
PALSY AND DEVELOPMENTAL
MEDICINE, PRIORITY AREA WAS
IDENTIFIED TO DEVELOP A COMMON
DATA SET OF MEANINGFUL MEASURES
FOR CEREBRAL PALSY TO TRY TO
IMPROVE OUR ABILITY TO MOVE
FORWARD WITH COLLECTING DATA IN
A CONSISTENT WAY AND TO PROMOTE
COLLABORATION ACROSS
INSTITUTIONS AND RESEARCHERS. IT
IS IMPORTANT TO ACKNOWLEDGE CDE
PROJECT ITSELF IS NOT REALLY A
DATABASE OF DATA BUT IT IS A
COLLECTION OF METADATA AND DATA
STANDARDS THAT CAN HELP US TO
IDENTIFY THE WAYS IN WHICH WE
COLLECT DATA AND HOW WE MEASURE
CERTAIN CONSTRUCTS SO THAT WE
ARE DOING CONSISTENTLY ACROSS
STUDIES AND QUESTIONS. WE ARE
NOT THE FIRST, THIS WAS PART OF
THE STRATEGIC PLAN IN 2013 BUT
THE NINDS WAS WORKING AHEAD AT
COMMON DATA ELEMENTS FOR OTHER
DISEASE AREAS. IN 2009 THE NINDS
DATA COMMON DATA ELEMENTS
PROJECT STARTED WITH EACH
DISEASE AREAS. AND THIS BEGAN
INITIALLY MORE FOCALLY AND HAS
EXPANDED QUITE A BIT OVER TIME
TO INCLUDE OTHER AREAS OF NIH,
FEDERAL AGENCIES, NON-PROFIT
ORGANIZATIONS, ACADEMIC
INSTITUTIONS. LIKE THE ONE I
WAS AFFILIATED WITH AND NATIONAL
ORGANIZATIONS LIKE THE AACM SO
THIS COLLABORATIVE EFFORT COMES
TOGETHER IN ORDER TO DEVELOP
THESE COMMON DATA ELEMENT
STRUCTURE FOR FOLKS TO USE AS
RELATES TO PARTICULAR DIAGNOSES
SUCH AS CEREBRAL PALSY. IF YOU
GO TO THE HOME PAGE RECENTLY
REDESIGN YOU WILL SEE 24
DIFFERENT DIAGNOSES REPRESENTED
HERE. SO IT HAS GROWN A LOT.
THROUGH THE EFFORTS OF A LOT OF
FOLKS AT THE DIFFERENT
INSTITUTIONS THAT I MENTIONED
EARLIER. SO WHAT IS THE GOALS OF
THE PROJECT OVERALL? THIS IS
THINKING ABOUT NINDS PERSPECTIVE
ON THE GOALS AND WHY THEY WANT
TO DO IT, IT IS ABOUT
STREAMLINING AND HARMONIZING AND
IMPROVING THE EFFICIENCY WHICH
WE LEARN THINGS AND DO SCIENCE.
IN THE UNITED STATES AND AT NIH
FUNDS. SO HARMONIZATION, THE
FIRST GOAL TALKS ABOUT THINKING
COMMON DEFINITIONS OF COMMON
LANGUAGE BEING CONSISTENT HOW
WITH E MEASURE THINGS AND ACROSS
CLINICAL SETTINGS. THIS ENHANCES
COLLABORATICOLLABORATION. IF WE
SYSTEMATICALLY COLLECTING DATA
IN SIMILAR WAYS YOU CAN COMBINE
DATA SETS AND DO THINGS TO
IMPROVE THE POWER OF THE WORK WE
ARE DOING WITHOUT EFFORT IN
TERMS OF DATA COLLECTION SIDE OF
THINGS. IT IS MORE EFFICIENT. WE
CAN START A STUDY MUCH QUICKER
BECAUSE THERE IS ALREADY BEEN
CASE REPORT FORMS DEVELOPED,
THERE IS INFORMATION AVAILABLE
ABOUT WAYS IN WHICH TO EVALUATE
DIFFERENT CONSTRUCTS THAT ARE
CONSISTENT ACROSS STUDIES AND
DISEASE GROUPS, NOT JUST
CEREBRAL PALSY, SOMETHING YOU
ARE INTERESTED IN. IN THE DATA
COLLECTION SIDE I REFERENCE CASE
REPORT FORMS. IF THE CERTAIN
CONTRACT IS REPRESENTED WITHIN
THE CDE PROJECT YOU CAN PULL
THAT WORD DOCUMENT OUT AND BEGIN
COLLECTING DATA AWAY, WHICH IS
NICE, ESPECIALLY FOR EARLY
FACULTY MEMBERS THAT ARE IN THAT
INITIAL PHASES OF TRYING TO GET
THE BALL ROLLING. BECAUSE THINGS
ARE COLLECTED IN A SIMILAR WAY
BECAUSE YOU DON'T HAVE TO THINK
ABOUT IT, WE ARE COLLECTING IN A
PARTICULAR FORMAT QUALITY AND
INTEGRITY OF THE DATA IS
IMPROVED, JUST BY STRUCTURE AND
INFRASTRUCTURE AND FRAMEWORK IN
PLACE IN WHICH TO DO THAT. SO
THAT IMPROVES DATA WE REFLECT
AND BURDEN OF HAVING TO GO BACK
AND CLEAN SOME OF THAT IN THE
WAYS THAT WE HAVE IN THE PAST.
AS RELATES SPECIFICALLY TO
CEREBRAL PALSY COMMON DATA
ELEMENT SO THE PROJECT BEGAN IN
2015 WHERE AAC BEGAN LEADERSHIP
CREATED A STEERING COMMITTEE WHO
WORKED WITH RESEARCH COMMITTEE
OF THE AACM AND HOW TO APPROACH
THIS PROBLEM, THIS IS A REALLY
BIG UNDERTAKING AND WHAT WAS THE
BEST WAY TO GET COLLECTIVELY A
BUNCH OF EXPERTS IN CEREBRAL
PALSY TO START THINKING ABOUT
THIS PROCESS AND THIS PROBLEM.
SO WE DIVIDED THE WORK INTO A
COUPLE OF WORKING GROUPS AND
EACH OF THOSE WORKING GROUPS
COMPRISE BETWEEN 5 AND 7
INDIVIDUALS THAT HAD SPECIFIC
KNOWLEDGE AND EXPERIENCE DOMAIN
BEING COVERED. IMPORTANTLY HERE
THIS INCLUDED A
MULTI-DISCIPLINARY TEAM, WE HAD
EPIDEMIOLOGISTS, CLINICIANS,
CLINICAL RESEARCHERS, EDUCATORS
AND CLINICAL TRIAL EXPERTS THAT
WERE ALL COLLABORATING TO BRING
THEIR OWN PERSPECTIVE TO THE
TABLE TO MAKE SURE THAT WHAT WE
WERE DOING RELEVANT TO THE
DIAGNOSIS AND RELEVANT TO
RESEARCH TO ADVANCE THE FRAMING
UTILIZED DURING THIS PROCESS FOR
THE FIRST VERSION OF CDE WAS THE
SELECTION CRITERIA WAS THE SAME
ACROSS GROUPS, FIRST IS THAT IT
WAS APPLICABLE TO CHILDREN AND
YOUNG PEOPLE 0 TO 18, BECAUSE IT
WAS FIRST ITERATION WE THOUGHT
IT WAS IMPORTANT TO NOT TRY TO
BITE TOO MUCH APPLE BUT KEEP
THINGS A LITTLE NARROWER TO
LOOKING AT PRE-ADULT YEARS
THOUGH THAT IS SOMETHING THAT
CAN CHANGE IN THE FUTURE AS WE
WILL TALK ABOUT LATER. THAT
REPRESENTED RELEVANT AREA OF
STUDY FOR CEREBRAL PALSY, IF IT
WAS RELATED TO THE KIND OF WORK
DONE TO ELEMENTS OF THE DATA
PROCESS, ANY DOCUMENTED VALIDITY
AND RELIABILITY SO WE WANTED TO
BE EVIDENCE FOCUSED IN TERMS OF
TOOLS, PROVEN USEFUL FOR THE
DIAGNOSIS IN THIS AGE RANGE.
HERE IS SCHEMATIC FROM PAPER WE
PUB ESTABLISHED EXPLAINING A
RILLET BIT ABOUT THE PROCESS FOR
THIS FIRST SET OF CDEs SO THE
ITEM LISTED IN THESE SIX BUBBLES
ACROSS HERE REPRESENT THE TITLES
OF WORKING GROUPS AND THE FOCUS
OF EACH WORKING GROUPS. FOR
EXAMPLE WE HAD REGISTERS AROUND
THE WORLD CONTRIBUTING TO THIS
PARTICIPANT CHARACTERISTICS
SECTION. WHICH WENT TO DETAILS
HOW TO CLASSIFY THE DIAGNOSIS
HOW DO WE UNDERSTAND MORE ABOUT
THE FAMILY STRUCTURE, GEOGRAPHIC
LOCATION OF INDIVIDUALS PART OF
THE RESEARCH STUDIES FROM DATA
ELEMENTS PERSPECTIVE. WE HAD A
GROUP THAT FOCUSED ON HEALTH,
GROWTH, GENETICS, CO-MORBIDITIES
AND LAB VALUES, A NUMBER OF
MDs A GROUP LOOKING AT
NEUROIMAGING DIAGNOSTICS,
ANOTHER TOOK A ON A HEAVY LIFT
AT NEURAL MOTOR SKILLS AND
FUNCTIONAL ASSESSMENT WHICH
THERE ARE MANY. NEUROCOGNITIVE
SOCIAL EMOTIONAL ASSESSMENTS
GROUP. ENGAGEMENT AND QUALITY OF
LIFE ASSESSMENTS GROUP. SO THE
PROCESS EACH OF THESE GROUPS
TOOK ON WAS INTERESTINGLY A A
LITTLE BIT DIFFERENT THEY
APPROACH THE QUESTION FROM A
DIFFERENT POINT OF VIEW. THE
CONSISTENCY WAS CRITERIA APPLIED
TO EVERY DATA ELEMENT OR TOOL,
THAT WAS EVALUATED. AND THE FACT
THEY ARE REFERENCING BACK TO
DATA ELEMENTS ALREADY IN
EXISTENCE. SOME GROUPS STARTED
THERE AND SAID WE WILL LOOK AT
DATA ELEMENTS THAT EXIST, AND
CATEGORIZE BETWEEN ONES RELEVANT
AND NOT RELEVANT THEN LOOK FOR
GAPS. AND OURS APPROACH FROM
OPPOSITE VIEWPOINT, WHAT IS
IMPORTANT AND ALREADY COVERED SO
THERE WAS VARIABILITY THERE
BASED ON PREFERENCES AND WORKING
STYLES OF DIFFERENT GROUPS.
THESE WORKING GROUPS WERE
OVERSEEN BY GROUP THAT THOUGHT
ABOUT THE INTEGRATIVE APPROACH
THAT NONE OF OF THEM WERE
WORKING IN SILOS BUT HAD
OPPORTUNITIES TO CROSS POLLINATE
AND THINK ABOUT GAPS MISSING.
WE CONSOLIDATED ALL THIS ACROSS
WORKING GROUPS AND MADE INITIAL
PROPOSAL THEN THERE WAS INTERNAL
REVIEW PERIOD AS WELL AS PUBLIC
FEEDBACK PERIOD. WE WILL TALK
ABOUT THAT PUBLIC FEEDBACK
PORTION IN A BIT,NA IS A
CRITICAL COMPONENT OF THIS WHOLE
PROCESS, THESE ARE NOT CREATED
IN ISOLATION NOSH NOR STATIC.
THE COMMON DATA ELEMENTS ARE A
LIVING DOCUMENT, THEY SHOULD BE
CHANGING BASED ON THE INPUT FROM
DIFFERENT STAKEHOLDERS. FROM
THE COMMUNITY BOTH SCIENTIFIC
COMMUNITY AS WELL AS COMMUNITY
OF INDIVIDUALS AND FAMILIES WHO
ARE AFFECTED BY CEREBRAL PALSY.
ANOTHER IMPORTANT THING TO POINT
OUT IS THE BAR ACROSS THE SIDE
THAT WE WERE ALSO GUIDED BY
INTERNATIONAL CLASSIFICATION
FUNCTION THINKING HOLISTICALLY
ABOUT THE POPULATION AND TYPES
OF STUDIES THAT UTILIZE THIS
PROJECT. SO WHY WOULD ANYBODY
USE THESE? WHAT IS THE PURPOSE,
WHAT IS THE UTILITY OF THIS
PROJECT OF WHICH NO DENYING TON
OF WORK THAT'S GONE INTO IT BUT
HOW DOES THAT MINIMIZE WORK AS
CLINICIAN OR RESEARCHER. THE
REASON TO PROPOSE OR THINK ABOUT
WHY YOU MIGHT USE THEM IS
BECAUSE IT SAVES YOU TIME. HERE
IS A ONE STOP SHOP REPOSITORY OF
VALIDATED INSTRUMENTS FOR THIS
DIAGNOSIS GROUP. AS MENTIONED
BEFORE IN SOME CASES THE CASE
REPORT FORM IS THAT YOU MIGHT
USE FOR YOUR STUDY ARE READILY
AVAILABLE OR FOR YOUR CLINICAL
PRACTICE. MAKE BE DEPARTMENT
AND ADOPTED, BY YOUR STUDY IN A
SHORT PERIOD OF TIME, ALL CASE
REPORT FORMINGS ARE DOWNLOADABLE
WORD DOCUMENTS, THAT CAN BE
ADDED TO IF THERE IS ELEMENTS
THAT ARE NOT YOUR STUDY FINDS
IMPORTANT NOT NECESSARILY
REFLECTED AS A COMMON DATA
ELEMENT. THOSE CAN BE ADDED IN.
IF THERE IS ELEMENTS REDUNDANT
THAT HAVE NOT BE OR ARE NOT CORE
ELEMENTS YOU CAN REMOVE THEM,
YOU DON'T HAVE TO COLLECT DATA
YOU DON'T NEED FOR YOUR STUDY.
THE IDEA IS ANY DATA YOU COLLECT
IS COLLECTED IN MANY A WAY THAT
IS CONSISTENT WITH OTHERS IN THE
AREA. ONE THING I DISCOVERED
RECENTLY THAT I FEEL HAS THE
POTENTIAL TO IMPROVE MY ABILITY
TO GET STARTED QUICKLY AND
STREAMLINE THE DATA COLLECTION
PROCESS IS THE DATA DICTIONARIES
THAT ARE AVAILABLE WITHIN THE
COMMON DATA ELEMENTS WEBSITE CAN
BE DOWNLOADED AND IMPORTED
DIRECTLY TO TOOLS SUCH AS RED
CAP THAT CAN FACILITATE YOUR
ELECTRONIC DATA CAPTURE IN A WAY
THAT CAN STREAMLINE THE PROCESS
AND DATA QUALITY BECAUSE HOW IT
IS COLLECT SOD THAT IS AN
EXAMPLE OF AN EXCITING WAY IN H
WHICH THIS PROJECT AND THE
RESOURCES THAT ARE AVAILABLE
FACILITATE QUICK ACCURATE DATA
COLLECTION FOR CEREBRAL PALSY.
I MENTIONED CORE ELEMENTS IN THE
LAST SLIDE AND I WANT TO REVIEW
WHAT THE DIFFERENT
CLASSIFICATIONS ARE. FOR EVERY
TOOL AND DATA ELEMENT, THE
WORKING GROUPS, AND/OR OVER SITE
STEERING COMMITTEE LOOK TO
DETERMINE HOW CONFIDENT WE ARE
IN THESE AREAS AND HOW IMPORTANT
ARE THEY ESSENTIALLY SO
SOMETHING THAT ARE SUPER
CONFIDENT AND CORE ACROSS THE
ENTIRETY OF THE NIH OR NINDS
SOMETHING THAT IS A GENERAL CORE
VARIABLE, EVERYBODY REGARDING
WHAT YOU STUDY, THIS IS AN
IMPORTANT DATA ELEMENT THAT
SHOULD BE INK COLLUDED.
ENCOMPASSED WITHIN THAT ARE
BIGGER THAN THAT WOULD BE ANY
ELEMENTSNA ARE DISEASE CORE
SPECIFIC SO ANYTHING FROM
CEREBRAL PALSY THAT IS -- THAT
SHOULD CONSISTENTLY BE RECORDED
REGARDLESS OF WHAT TYPE OF STUDY
YOU ARE DOING. SO THERE IS VERY
FEW OF THESE ACTUALLY THAT ARE
INCLUDED WITHIN CP FROM
APOLOGETIC. THERE IS MORE
FLEXIBLIBILITY FOR CLINICIANS
AND RESEARCHERS BECAUSE THERE'S
NOT A LOT OF THINGS THAT ARE
CORE. THAT IS REFLECTED IN THE
HETEROGENEITY OF THE DISORDER
THERE IS NOT MANY THINGS
CONSISTENT AND CRIT CAN BELIEVE
AEVERY INDIVIDUAL AT ALL AGES
MENTIONED. WE DO HOWEVER HAVE A
NUMBER OF ITEMS SUPPLEMENTAL IE
NOT REQUIRED BUT WE HIGHLY
RECOMMEND THEM. THEY REALLY GIVE
US SOME GOOD INFORMATION ABOUT
THE COHORT OF INDIVIDUALS PART
OF STUDY OR PARTICIPATING IN
INTERVENTION TO UNDERSTAND WHERE
THEY ARE SITUATED WITHIN THE
ENTIRE POPULATION OF CEREBRAL
PALSY. THERE IS ADDITIONAL
SUPPLEMENTAL WHICH IS A LARGE
NUMBER OF ELEMENTS AND TOOLS
THAT ARE RECOMMENDED IN THIS
PROJECT GENERAL AND THAT
ESSENTIALLY MEANS THEY ARE GOOD
THESE ARE GOOD CHOICES TO USE
FOR THAT. BUT THEY ARE NOT
REQUIRE AND IF YOUR STUDY IS NOT
INTERESTED IN MEASURING THAT,
YOU DON'T NEED TO INCLUDE THOSE
ELEMENTS. WE HAVE ASSESSMENTS
THAT HAVE POTENTIAL REASON TO
BELIEVE IMPORTANT DOMAIN TO LOOK
AT OR WELL VALIDATED IN OTHER
GROUPS BUT WE DON'T HAVE THE
DATA YET FOR CEREBRAL PALSY.
THERE IS AREA OF OPPORTUNITY TO
WANT TO UNDERSTAND IS IT A VALID
MEASURE, RELIABLE, GOOD
REPEATABILITY, THOSE SORTS OF
QUESTIONS, BUT NOT THERE YET, WE
INCLUDED THOSE BECAUSE THEY HAVE
POTENTIAL BUT LESSER CONFIDENCE
IN QUALITY AT THIS POINT. SO
WHEN YOU LOOK AT THE TOOLS
ESPECIALLY, THERE ARE COUPLE OF
-- THERE IS ONE PARTICULAR FORM
QUITE USEFUL. AND IT RELATES A
LITTLE BIT TO SOME OF THE
CLASSIFICATIONS WE JUST TALKED
ABOUT. SO THAT THE NOTICE OF
COPYRIGHT FORMS YOU FIND LINKS
IN TOOLS OR OUTCOME MEASURES
WITHIN THE CBE PROJECT. THESE
FORMS ARE GOLDMINES OF
INFORMATION PARTICULARLY ABOUT
DOMAIN YOU WANT TO LOOK AT BUT
NOT BACKGROUND RONES IF A CLIFF
NOTES VERSION OF HOW THIS TOOL
IS RELEVANT. YOU CAN ASSESS IS
THIS SOMETHING THAT COULD BE
INTERESTING USEFUL TO ME AND
LEARN MORE PERHAPS OR THIS IS
NOT WHAT I THOUGHT IT WAS AND
NOT THE RIGHT TOOL. SO THINGS
ON NOTICE OF COPYRIGHT FORMS
THOUGH NOT ALL NOTICE ARE
COPYRIGHTED INSTRUMENTS, THAT IS
AN IMPORTANT POINT TO MAKE. BUT
YOU CAN FIND ON THAT FORM FOR
ALL OF THEM, WHERE IS IT
AVAILABLE. IS IT PUBLICLY
ACCESSIBLE, DO YOU HAVE TO PAY
FOR IT? WHAT CLASSIFICATION? IS
THIS A CORE ELEMENT,
EXPLORATORY, HIGHLY RECOMMENDED?
FOR EXAMPLE, DESCRIPTION OF THE
TOOL. SO BASIC INFORMATION ABOUT
WHAT IS IT MEASURE, HOW LONG
DOES IT TAKE, THOSE TYPES OF
THING, WHO IS IT FOR? ANY
PARTICULARLY SPECIAL
INSTRUCTIONS OR OTHER IMPORTANT
INFORMATION SOMEONE NEEDS TO
CONSIDER, WHAT MIGHT BE INCLUDED
IN HERE IS WHAT ICF DOMAIN DOES
IT COVER. IN CLASSIFICATION.
THERE IS A SECTION ABOUT PSYCHO
METRIC PROPERTIES THAT REPORT
VALIDITY OR RELIABILITY
DOCUMENTED IN THE LITERATURE.
THERE IS A JUSTIFICATION FOR
INCLUSION IN THE CP CDE SO THAT
IS NICE INSIGHT TO WHAT THE
WORKING GROUP OR COMMITTEE WAS
THINKING. AND FINALLY A NICE
RESOURCE IS SOME PRIMARY
REFERENCES. PRIMARY REFERENCES
FROM WHAT A TOOL WAS FIRST
DEVELOPED, WHEN VALIDATED IN
CEREBRAL PALSY, SOMETIMES BOTH
AND SOMETIMES HIGH QUALITY
STUDIES THAT UTILIZE THEM OR
SYSTEMATIC REVIEWS THAT MENTION
THEM. SO THESE NOTICE OF
COPYRIGHT FORMS ARE REALLY
BENEFICIAL AND USEFUL AS YOU ARE
GETTING TO LEARN A BUILT MORE
ABOUT MUTUALS. SO I MENTION WE
INCLUDE AD RELEASE AND PUBLIC
FEEDBACK ABOUT VERSION 1.0 OF
THE CPCDE AND THIS IS A LIVING
AND BREATHING AND CONSTANTLY
EVOLVING PROJECT SO THAT ONE IS
JUST A STARTING POINT. WE EXPECT
ELEMENTS ARE GOING TO EVOLVE
OVER TIME AS WE LEARN MORE AND
AS TOOLS BECOME NEWLY AVAILABLE
FOR DIFFERENT DOMAINS. AS A
RESULT OF THIS PUBLIC COMMENT
PHASE WE UNDERSTAND GAPS. SOME
THAT NEEDED TO BE FILLED
URGENTLY SO SURGICAL
INTERVENTIONS AND SURGICAL
OUTCOMES ASK AN AREA WITHOUT
REPRESENTATION IN VERSION 1.0 SO
INTERDISCIPLINARY SURGICAL
WORKING GROUP CREATED AFTER THAT
FEEDBACK PORTION AND THEY HAVE
BEEN WORKING ON SURGICAL CDEs.
IN ADDITION IT WAS NOTED SOME
AREAS OF THE ICF THAT WERE NOT
ADEQUATELY REPRESENTED.
SPECIFICALLY CHRONIC PAIN AN
SLEEP DISTURBANCES RELATE TO DAY
TO DAY FUNCTION WAS AN AREA
OVERALL NOTED SO PAIN WORKING
GROUP WAS ALSO FORMED IN
RESPONSE TO THESE GAPS NOTED
AFTER INITIAL VERSION. AFTER THE
INITIAL 1.0 VERSION CDE WAS
RELEASED THE WORKING GROUP
DISSOLVED IN AN OVERSIGHT ANY
WAS FORMED SO THIS IS A GROUP OF
DEDICATED INDIVIDUALS LED BY DR.
BRANDONBURG, CHAIR OF THE
COMMITTEE TO CARRY THE PROJECT
FORWARD AND THERE IS A NUMBER OF
PEOPLE ON THIS COMMITTEE AND
ROTATED OFF, THIS REPRESENTS THE
CURRENT OVERSIGHT COMMITTEE IT
IS A COMBINATION OF INDIVIDUALS
FROM THE ORIGINAL WORKING GROUPS
IN MOST CASES, WHO HAVE
KNOWLEDGE OF HISTORY AND PROCESS
IN PLACE BEFORE AND REPRESENT
DIFFERENT AREAS OF SPECIALTY,
AND IMMUNITY IN COLLABORATION
WITH REPRESENTATIVES FROM NINDS
AS WELL AS ENNIS, A CORPORATION
CONTRACTOR THAT HELPS US WITH
ALL THE ORGANIZATIONS BEHIND THE
SCENES PIECES. SO THEY DO
WONDERFUL WORK IN TERMS OF
KEEPING ALL THE DATA STRAIGHT,
PEOPLE THE HOE KEEPING STANDARDS
STRAIGHT AND PUSHING THEM OUT TO
THE WEBSITE FOR ALL OF OUR
USAGE. THIS SHAH THE TEAM MOVING
OUR PROJECT FORWARD AND STEWARDS
OF COMMON DATA ELEMENTS PROJECT
WITH NOD TO FUTURE MODIFICATIONS
I REFERENCE GROUPS WORKING HERE,
SINCE THE VERSION 1.0 THERE WAS
ALSO AN ASSISTIVE DEVICES CRF
PUT OUT. AND VERY SOON IN
SEPTEMBER OF 2022 WE WILL BE
LAUNCHING THE NEW PAIN
INSTRUMENTS AND ORTHOPEDIC
SURGICAL CDE SO IN SEPTEMBER
THOSE RELEASE FINAL VERSION,
DATES HAVE BEEN THROUGH A PUBLIC
RESPONSE PERIOD. SO WE HAD A
CHANCE TO PUBLISH AND GET
FEEDBACK FROM FOLKS IN THE
COMMUNITY THAT HAD PERSPECTIVES
ON HOW WE APPROACH CERTAIN
THINGS AND AN OPPORTUNITY FOR
DIALOGUE AND MAKE MODIFICATIONS
TO ENCOURAGE FEEDBACK SO WHEN
YOU SEE ANNOUNCEMENTS AND TRY TO
CAST A WIDE NET TO LOOK WHAT IS
CHANGING IN THE CDE BECAUSE WE
DO CARE ABOUT AND TAKE INTO
CONSIDERATION THE FEEDBACK OF
THOSE TAKE THE TIME TO LOOK.
THAT IS A CRITICAL COMPONENT OF
THE PROCESS, WE DO OUR BEST TO
BE DILIGENT ABOUT GOALS AND
VERGE INTO CREATING NEW
COMPONENTS TO CDE BUT WE ARE
HELPED BY COLLEAGUES. THIS IS A
OVERVIEW, THE PAIN GROUP AT
TABLE OF THE NEW OR REVISED
TOOLS THAT HAVE BEEN INCLUDED IN
THAT NEW RELEASE. THAT IS COMING
SOON. THE LAST THING TO
EMPHASIZE HERE IS THERE IS
CONTINUED FOCUS IN THINKING
ABOUT HOW TO BEST INTEGRATION
THIS INTO OTHER TOOLS USE.ED. I
GIVE THAT EXAMPLE OF RED CAP,ING
THISOR SOMETHING WE HAVE BEEN
PROVIDING TRAINING ON AT THE
AACPM MEETING. IN WORKSHOP
FORMAT. OUR PARTNERS AT NINDS
HAVE BEEN ENCOURAGING AND
COLLABORATING TO CONTINUE TO
PUSH THAT TRAINING OUT SO FOLKS
HAVE ACCESS TO IT. THAT IS
EVERYTHING I HAVE TO GIVE SOME
BRIEF UPDATES THERE, ENCOURAGE
QUESTIONS OR THOUGHTS YOU MIGHT
HAVE AND TO INVITE YOU TO
CONTINUE TO BE PART OF THIS
EVOLVING PROCESS OVERTIME. THANK
YOU.
>> GOOD AFTERNOON, HELLO MY NAME
IS PAUL CROSS GROSS PRESIDENT
AND CEO CO-POUNDER OF THE
CEREBRAL PALSY RESEARCH NETWORK
AND APPRECIATIVE OF THE NIH
STAFF INVITING ME TO TALK ABOUT
THE USE OF REGISTRIES IN CP
RESEARCH. TO GIVE AN IDEAL HOW
TO PRESENT THIS INFORMATION I
WILL START WITH GOING BACK TO
THE 2014 MEETING WHERE WE
DISCUSSED REGISTRIES
SUBSTANTIALLY AND TALK ABOUT THE
WORK THAT CAME OUT OF THAT TO
CREATE A NATIONAL REGISTRY AND
THE CP RESEARCH NETWORK. I WILL
DESCRIBE HOW IT IS BUILT AND
USED IN RESEARCH AND TOUCH OTHER
REG REASON INDUSTRIES USED IN
THE UNITED STATES FOR CPE
RESEARCH. THROUGHOUT THE
PRESENTATION I HAVE USED THIS
LITTLE TABLET TO INDICATE WHERE
WHAT I AM TALKING HAS OTHER
IMPACT ON THE STRATEGIC PLAN
BEYOND JUST THE CHALLENGE
REGISTRIES SET OF PRIORITIES AND
RECOMMENDATIONS SO YOU WILL SEE
I WILL REFERENCE THOSE. AS I
SAID THIS STARTED WITH THE FIRST
NINDS NICHD WORKSHOP IN 2014,
TWO MEETINGS THAT CONTRIBUTED TO
THE STRATEGIC PLAN. THE 2014
MEETING HAD A SPECIFIC
DISCUSSION AROUND REGISTRIES IN
SURVEILLANCE AS A KEY TOPIC. DR.
SHEVELLE SPOKE CANADIAN
REGISTRY, DR. GAY LORD SPOKE
ABOUT STATE OF REGISTRIES IN THE
U.S. AND SPECIFICALLY THE CP
RESEARCH REGISTRY SHE IS
AFFILIATED WITH, AND DR.
(INAUDIBLE) SPOKE ABOUT THE ADAM
NETWORK AND THE CP SURVEILLANCE
PART OF THAT. SO THIS MEETING
WAS QUITE UNIQUE FROM THE
PERSPECTIVE AT THE END, WE
ASSIGNED TASK FORCE GROUPS TO
CARRY FORWARD DELIVERABLES TO
DRIVE TO A PLAN TO THE PLAN. SO
SOME OF THE FINDINGS FROM THE
MEETING WERE WE HAD DIFFERENT
USES, COLLIELY FOR DIFFERENT
TYPES OF REGISTRIES OR
SURVEILLANCE, SO THERE WERE
THINGS THAT WERE FOCUSED ON
POPULATION LIKE EPIDEMIOLOGY AND
RISK FACTORS AND TRACKING
INCIDENCE AND PREVALENCE, AND
THEN INTERVENTION BASED
REGISTRIES THAT WERE OFTEN
CENTER BASED USED FOR STUDY
PLANNING OR RECRUITMENT FOR
RESEARCH. THERE WERE A FEW
SINGLE CENTER REGISTRIES IN THE
U.S. AT THE TIME AND THEN REALLY
MOST FUNDED AFTER THE CDC
EFFORTS TO DRIVE SURVEILLANCE
THROUGH THE ADAM NETWORK
HAPPENING IN THREE OR FOUR
LOCALITIES FUNDING TIME FRAME.
ONE IDENTIFIED WAS FUNDING
SUSTAINABILITY OF INFRASTRUCTURE
IS CHALLENGING FOR NATIONAL
REGISTRY. ALL SUCCESSFUL
REGISTERED AS OUTSIDE THE U.S.
RUNNING IN COUNTRIES WITH
SOCIALIZED MEDICINE. AT THE END
OF THAT DR. (INAUDIBLE) ASSIGNED
TO THE REGISTRY TASK FORCE AND
PEOPLE SIGNED UP TO MOVE THOSE
TOPICS FORWARD. SO THE GROUP
STARTED MEETING MULTIPLE TIMES A
MONTH AND VERY QUICKLY DR.
(INAUDIBLE) AND I DECIDED TO
HAVE TWO DIFFERENT TOPICS
BETWEEN POPULATION BASED
REGISTRIES WHICH DR. GAY LORD
LED THE EFFORT ON AND CENTER
BASED INTERVENTION REGISTRIES
WHICH I LED THE EFFORT ON. SO WE
DEVICED THE FIRST SEARCH AFTER
THE MEETING. AFTER SEVERAL
MEETINGS WE CAME TO THE
CONCLUSION THAT THE POPULATION
GROUP CONCLUDED THAT THE BEST
THING FOR POPULATION OBSERVATION
WAS TO ADVOCATE TO INCREASE
FUNDING FOR ATOM SURVEILLANCE
AND ADVOCATING IS NOT WHAT NIH
DOES AND THEY WERE NOT PART OF
THOSE DISCUSSIONS. THE CENTER
BASED GROUP DECIDED TO FORM A
NETWORK WITH A REGISTRY AT ITS
CORE. FOR OTHER RECOMMENDATIONS
AND TASK FORCES THAT CAME OUT OF
THAT MEETING INCLUDING MORE
COMPARATIVE EFFECTIVENESS
RESEARCH. WHICH WAS DRIVEN BY
DR.S STEVENSON INCREASING THE
STUDY OF ADULTS WHICH DR.
(INAUDIBLE) AND OTHERS LEADING
AND BRING MORE YOUNG SCIENTISTS
INTO THE FIELD WHICH JONATHAN
LED THE EFFORT ON. SO AS I SAID
OUR GROUP DECIDED TO FORM A
NETWORK AND THAT WAS THE START
OF THE CP RESEARCH NETWORK IN
APRIL 2014.MENT THE FIRST THING
IS SET OUT TO DEFINE
MULTI-DISCIPLINE REGISTRY, YOU
CAN SEE I'M REFERRING TO THE
DIFFERENT ASPECTS OF THESE
DECISIONS AND IMPACT ON THE
PLAN. WE ESTABLISHED FOUR
DISCIPLINE GROUPS NEUROSURGERY
GROUP, ORTHOPEDICS GROUP, PT
GROUP, NON-SURGICAL INCLUDING
DEVELOPING PEDIATRICIANS,
NEUROLOGISTS PHYSICAL MEDICINE
DOCS, THIS WORK ENDED UP
ENGAGING AND CONSOLIDATING SOME
OF THOSE ACTIVE SINGLE CENTER
REGISTRIES INCLUDING NATIONWIDE
AND WE BASED OUR DATA COLLECTION
OFF THE MODEL WE SAW NATIONWIDE
CHILDREN'S LEARN FROM EVERY
PATIENT REGISTRY, WHERE DOCTOR
ASKS FOR USUAL CARE AND EMR
FORMS. WE WORKED WITH THE ADULT
TASK FORCE TO HAVE THEM VALIDATE
OUR REGISTRY ELEMENTS FOR USE
WITH ADULTS. THE DESIGN POINT
FOR THE REGISTRY OF QUESTION WAS
A PRACTICE BASED EVIDENCE
METHODOLOGY, SUSAN HORN
PRESENTED AT THE 2014 MEETING
LED OUR EFFORTS TO ANSWER THE
QUESTION OR WHAT DATA TO COLLECT
TO ANSWER THE QUESTION WHAT
PATIENT CHARACTERISTICS AND
INTERVENTIONS MAKE A DIFFERENCE
IN OUTCOME. WE WENT TO SECURE
SUFFICIENT PHILANTHROPIC
FUNDING, FOR FIVE YEARS OF THE
NETWORK AND LATER WE ESTABLISHED
A LONG TERM SUSTAINABILITY
MODEL. SO AS I SAID WE DECIDED
WE NEED TO WRAP A NETWORK AROUND
THE REGISTRY SO THE INITIAL
SITES THAT WERE INVOLVED IN
PLANNING THE REGISTRY WHERE
CHILDREN'S ALABAMA, CINCINNATI
CHILDREN'S, NETWORK, NATIONWIDE
CHILDREN'S HOSPITAL, SICK KIDS.
AND UNIVERSITY OF UTAH AS OUR
DATA COORDINATING CENTER. WE SET
A STRATEGY, WE IMPLEMENTED THE
REGISTRY AND THEN IN JANUARY OF
2016 WE INVITED 16 OTHER SITES
TO JOIN US AS SITES TO ADD DATA
TO THAT REGISTRY AND PART PAID
IN COLLABORATIVE RESEARCH. WE
CREATE A SET OF STANDARD
OPERATING PROCEDURES FOR
COLLABORATIVE RESEARCH, FOR DATA
ACCESS AND PUBLICATIONS, FOR THE
CLINICAL REGISTRY ON CPRN.ORG.
WE ESTABLISH A SET OF MONTHLY
VIRTUAL AND ANNUAL IN PERSON
MEETINGS. AND WE IMMEDIATELY
PARTNERED WITH DR.S DAMIANO AND
STEVENSON ON MULTI-CENTER
COMPARATIVE EFFECTIVENESS
GRANTS. APPLY IN 2014, 2015 TO
PCORI AND SINCE MOVED THAT
FORWARD IN GRANTS PURSUING NIH.
SO WHAT WE FORMED WAS A LEARNING
HEALTH NETWORK FOR CEREBRAL
PALSY ACROSS THE US. PARTS OF
CANADA, WITH MORE THAN -- SITES,
GREEN PINS REPRESENT SITES
ACTIVELY COLLECTING DATA, THE
YELLOW PINS ARE WORKING ON THE
TECHNOLOGY PORTION RED PIN ON
SCIENCE AND BLUE KIP PINS RAISE
THEIR HAND SAID THEY ARE
INTERESTED IN PARTICIPATING BUT
NOT GONE THROUGH THE
PARTICIPATION AND AGREEMENT AS
OF YET. SO ONE OF THE FIRST
THING WE DID, REALLY ADDRESSES A
KEY ELEMENT OF THE STRATEGIC
PLAN IN TERMS OF ENGAGING THE
COMMUNITY, SO WE WENT OUT AND
GOT PCORI FUNDED ENGAGEMENT
AWARD IN 2017 AND RAN A PROCESS
PUBLISHED RESULTS UP IN 2018, WE
RAN A SET OF INFORMATION PAL
WEBINARS THAT INVOLVE MORE THAN
200 PEOPLE, WE DID A
COLLABORATIVE RESEARCH QUESTION
GENERATION PROCESS GENERATED
PRIORITIZE ALONG WITH SOME
IDEAS. AND THEN WE CAME TOGETHER
WORKSHOP AND FINALIZED 16
RESEARCH IDEAS, THAT GROUPED
INTO THREE MAIN THEMES INCLUDING
ADULT ISSUE AROUND AGING PAIN
AND FATIGUE. COMPARATIVE
EFFECTIVENESS OF INTERVENTIONS
AND QUALITY OF LIFE. THAT WAS
PUBLISHED IN DEVELOPMENTAL
MEDICINE, CHILD NEUROLOGY IN
AUGUST OF 2018 AND DRIVES
RESEARCH AGENDA. ONE OF THE
THINGS WE LEARNED FROM THAT
PROCESS WAS THE IMPORTANCE OF
LONGITUDINAL STUDIES, AND THE
IMPORTANCE OF THE ADULT
COMMUNITY EMPHASIZED BY
COMMUNITY INVOLVEMENT IN THAT
WHICH IS FAIRLY BALANCED SLICE
OF THE COMMUNITY SO YOU CAN SEE
ADDRESSING MORE STRATEGIC PLAN
SO WE SET OUT HOW TO DO THIS AND
WE BELIEVE PATIENT REPORTED
OUTCOMES REGISTRY PATIENT
POWERED WOULD BE CRITICAL SO WE
ENGAGED BROAD SET OF COMMUNITY
ADVISORS AND WITH THEM, DR.
(INAUDIBLE) AND THORP LED AN
EFFORT TO PRODUCE ADULT STUDY OF
WELL BEING AND PAIN, CO-PRODUCE
WITH THE COMMUNITY. TO MAKE IT
AVAILABLE TO PEOPLE WE WRAP THAT
IN A PLATFORM WITHIN CPRN CALLED
MY CP WHICH ALLOWS THE COMMUNITY
AT LARGE TO PARTICIPATE IN CPRN
COMMUNITY REGISTRY. THEN
PROVIDED ADDITIONAL THINGS
WRAPPED AROUND THAT PLATFORM
INCLUDING PRIVATE FORM FOR
DISCUSSION OF RESEARCH
PRIORITIES ON EVIDENCE AND LIVED
EXPERIENCE FOR THE EXTENDED
COMMUNITY. SO NOT ONLY PEOPLE
WITH CP CAREGIVERS BUT ALSO
CLINICIANS. THEN WE OFFER
PERSONALIZED WEB CONTENT BASED
ON WHAT PEOPLE SHARED WITH US
ABOUT CP. SO IN TERMS OF THE
USES OF REGISTRY IN RESEARCH, IT
IS DIFFERENT BETWEEN CLINICAL
REGISTRY AND COMMUNITY REGISTRY.
THE CLINICAL REGISTRY HAS
LONGITUDINAL CORE REGISTRY
QUESTION OF WHAT PATIENT
CHARACTERISTICS AND WHAT
INTERVENTIONS LEAD TO BEST
OUTCOME. BUT AS YOU HEARD FROM
DR. CREWER YESTERDAY, WE
PARTNERED ON THE GENOMEI INSIGHT
STUDY NIH FUNDED STUDY TO LOOK
AT INSIGHT TO CEREBRAL PALSY. WE
GOT FUNDING FROM PEDIATRIC
EPILEPSY RESEARCH TO ADD
EPILEPSY RESEARCH FOR KIDS WITH
CP AND EPILEPSY, WE HAVE USED IT
TO DO LOTS OF STUDY OF SURGICAL
SPASTICITY AND OTHER TREATMENTS
AND RECENTLY FUNDED AGAIN BY --
TO PLAN A STANDARDIZED MOTOR SAM
VIDEO REGISTRY TO ADD ON TO THE
REGISTRY. ALSO GET TO USE FOR
PRELIMINARY STUDY ON GRANTS MOST
RECENTLY TO PROVIDE PRELIMINARY
GRANTS FOR SCR EFFECTIVENESS
STUDY, WHILE NOT RESEARCH WE
EMBED QUALITY IMPROVEMENT EFFORT
ON PUMP INFECTIONS IN THE
REGISTRY, SO THE REGISTRY WITHIN
USED TO -- CAN BE USED TO
SUPPORT QUALITY IMPROVEMENT. ON
THE COMMUNITY REGISTRY SIDE WE
USE IT FOR ON BOARDING INITIAL
CHARACTERISTICS USED TO RECRUIT
FOR SPECIFIC STUDIES LIKE ADULT
STUDIES OFFING WITH BEING AND
PAIN. ALL THE OTHER STUDIES ARE
BUILT AS RED CAP SURVEYS THAT
CAN BE INTEGRATED INTO THE
COMMUNITY REGISTRY AND
AUTOMATICALLY REACHED OUT TO
PEOPLE IN THE MY CP TO
PARTICIPATE. ONE SCENARIO HOW IT
IS USED FOR VERGE IS EXPANDED BY
PARTNERSHIP, I WON'T TAKE YOU
THROUGH AN EXAMPLE. THESE ARE
SITES THAT CONTRIBUTE DATA TO
PHENOTYPIC DATA TO REGISTRY AND
ALSO PARTICIPATING IN THE
GENETICS STUDY. SO THE DATA THAT
IS COLLECTED IS UNWAIVER OF COP
SENT, A LIMITED DATA SET WHERE
PHI ITEMS ARE DATE OF BIRTH AND
COUNTER DATE. BEYOND THAT THERE
ARE UP TO 500 UNIQUE TO CP
REGISTRY ELEMENTS AS WELL AS
EXTRACTION FROM EMR FOR PCORNET.
LABS PHARMACY, DEMOGRAPHICS AND
VITALS COME IN AS PART OF THAT.
THE LAST THING ARE SET OF
PRIVACY PRESERVING TOKENS WHICH
CAN BE USED FOR LINKING DATA
SETS. NOT PHI BUT GENERATED IN A
HASH, THIS IS THROUGH OUR
PARTNERSHIP SO THE WAY THEY ARE
CONTACTED THE PARTICIPANTS SEND
EMAIL OR SNAIL MAIL OR WEBINAR
TO CONTACT LAB AND RECEIVE A
URL, A LINK FOR THE I CONSENT,
THAT DR. CURE TALKED ABOUT.
THROUGH THAT WE GET A SPIT KIT
WHICH ALLOWS THEM TO SEQUENCE
DNA BUT ALSO CONSENT TO GENERATE
THE SAKE SAME TOKENS AND THE
CREW CAN SEND TO RDCC A REQUEST
FOR PHENE TIP ANALYSIS FOR THE
MATCHING TOKENS THEY HAVE
COLLECTED GENETIC SAMPLES FROM.
SO REALLY POWERFUL MODEL. SO THE
WAY THE DATA GOES IN THE PRIMARY
IS THROUGH EMR FORMS SO
CLINICIANS INTERACT WITH A POP
UP FORM CP ELEMENTS THAT INJECT
INTO NOTES. ALL THE DATA IS
USUAL CARE DATA BUT THE FOR
FORMAT IS SAME THAN SENT TO THE
COORDINATING CENTER SO THE
SECOND METHOD IS USING CHART
EXTRACTION. THIS IS EXPENSIVE
AND SLOWER DUPLICATE RERESOURCES
OR ENTRY, BUT IT IS TARGET DATA
POPULATION, CENTRALIZE RED CAP
AND THAT DATA IS EXTRACTED AND
FROM RED CAP OVER TO REGISTRY.
IN THE COMMUNITY REGISTRY IT IS
DONE BY PEOPLE ON BOARDED TO OUR
WEBSITE FOR MY CP, THEY GET
PRESENTED THE SURVEYS THAT MAKES
SENSE FOR WHO THEY ARE AND GO
THROUGH INFORMED CONSENT PROCESS
AND CAN KICK OFF FROM WEBSITE,
AND RECEIVE EMAIL REMINDERS
ABOUT NEW SURVEY LONGITUDINAL
FOLLOW-UPS TO SURVEYS AND THEN
CONNECTED TO A SURVEY THAT IS
BUILT IN RED CAP. TWO QUICK SNAP
SHOTS NOVEMBER 21, 250 PATIENTS
YOU CAN SEE THE THE U SHAPED
CURVE OF GMSES WHICH IS
DIFFERENT THAN POPULATION BASED
VIEW BECAUSE NOT SURPRISINGLY
MORE INVOLVED POPULATIONS OF 4
RAND 5 ARE SEEN IN CLINIC AND
YOU SEE AGE DISTRIBUTION OR HERE
IS SIGNIFICANT NUMBER OF ADULTS
BUT IT IS DOMINATED BY THE MORE
PEDIATRIC DATA CONTRIBUTORS AT
THIS TIME. IF I COMPARE FROM THE
COMMUNITY REGISTRY A FEW DAYS
AGO THIS IS THE DISTRIBUTION OF
GMFCS SO MORE BALANCED MORE
HEAVILY LIENS TO GMFCS 2, A
LITTLE BIASED TOWARDS WHITE
MIDDLE CLASS AND YOU SCIAMACHY
BROADER AGE RANGE IN ADULTS
INVOLVED IN THE COMMUNITY
REGISTRIES. I WANT TO TOUCH ON
THE NETWORKS WRAPPED AROUND IT
AND HOW RELATES TO STRATEGIC
PLAN. WE PRODUCE 2015 CP TOOL
KIT, A GREAT WAY FOR PARENTS NEW
DIAGNOSIS TO GET HELP
UNDERSTANDING, THIS WAS A CORE
THING RECOMMENDED IN THE
STRATEGIC PLAN SO WE DEVELOPED
THAT COMING OUT OF THAT MEETING.
IT IS TRANSLATED INTO SPANISH
AND PORTUGUESE. DEVELOPED A WELL
BEING GUIDE. SECONDLY WE ARE
PARTICIPANTS IN THE COMMON DATA
ELEMENTS EFFORT WE CONTRIBUTED
OUR DATA ELEMENTS AND WORKING TO
HARMONIZE THE OTHER ONES WITH
CPC. AND LASTLY ON DEVELOPMENT
WE TOUCH ALL RECOMMENDATIONS BUT
THIS IS A PARTIAL LIST OF NAMES
OF CLINICIANS AND RESEARCHERS
THAT HAVE BECOME CP RESEARCHERS
AS FUNCTION OF INVOLVEMENT AND
INTEREST IN THE NETWORK AND
REGISTRY, SO TO CONCLUDE CP
RESEARCH NETWORK BOTH ARE YOUNG
IN DEVELOPMENT, WE HAVE SOME
CHALLENGES, WITH DIVERSITY
EQUITY AND INCLUSION IN
COMMUNITY REGISTRY BECAUSE OF
COLLECTION MODEL BUT OVERALL OUR
LEARNING HEALTH NETWORK IS AN
IDEAL MODEL HOW TO DO CLINICAL
RESEARCH ON COMMUNITY
PRIORITIES, QUALITY IMPROVEMENT
HOW WE CAN IMPLEMENT DISSEMINATE
EVIDENCE, PROVIDE A
COLLABORATIVE TRAINING
ENVIRONMENT AND ENGAGE THE WHOLE
COMMUNITY. AS I SAID WE HAVE
DETERMINED SUSTAINABILITY MODEL
TO OVERCOME THAT CORE CONCERN.
SO FINALLY, TO TAKE A LOOK
OUTSIDE THE CPRN NUMEROUS CPs
USED IN THE UNITED STATES
LARGEST WHICH CP REGISTRY AT
NORTHERN UNIVERSITY, 2019 NEARLY
1400 PARTICIPANTS IN ILLINOIS.
LOOK AT DEMOGRAPHICS THEY ARE
PRETTY BALANCED ON GMFCS THOUGH
THEY LEAD TO 4 AND 5 YOU EXPECT
TO SEE POPULATION BASED
REGISTRY. AND RECRUIT FOR
INTERVENTIONAL STUDIES BASIC AND
CLINICAL AS WELL AS FOR SURVEYS
TO GIVE AN IDEA OF THEIR LEVEL
OF ACTIVITY 23 STUDIES BETWEEN
2019 AND 2021. COLUMBIA
UNIVERSITY ACTIVE WITH A
RECRUITMENT CONTACT REGISTRY OF
ABOUT A THOUSAND PARTICIPANTS IN
YOUNGER AGE GROUP AND THEY
RECRUITED 13 STUDIES IN THE LAST
FIVE YEARS THERE IS REGISTRY CP
CHILDREN'S HOSPITAL H GATHERING
INFORMATION ABOUT USAGE IN TIME
FOR THIS PRESENTATION. IN
CONCLUSION, CONCLUSION FOR
FUTURE DIRECTIONS SEEKING TO
EXPAND NUMBER OF SITES
CONTRIBUTING PATIENT DATA TO
REGISTRY. WE ARE EXCITED TO BE
DEVELOPING A DEIDENTIFIED
VERSION USED FOR DECENTRALIZED
RURAL LEVEL ANALYSIS OF THE
DATA. DR. (INAUDIBLE) HAS
RECENTLY RECEIVED A PLANNING
GRANT FOR A VIDEO REGISTRY FOR
DIAGNOSIS OF CP THAT IS VERY
EXCITING AND WE ARE WORKING IN
CONJUNCTION WITH HOPE FOR HIE TO
INCORPORATE EARLY FINDINGS
INCLUDING IMAGING TO REGISTRY.
THE IMMORTAL WORDS OF WAYNE
GRETSKI AND REITERATED BY DR.
KOROSHETZ 2018 WE NEED TO TAKE
MORE SHOTS ON GOAL. WE ARE
REALLY HOPING TO BRING MORE
CLINICAL TRANSLATIONAL
RESEARCHERS TO THE NEED
COLLABORATION WITH THIS WHOLE
PROOF GATHERED HERE TODAY SO
THANKS TO THE ORGANIZERS FOR
INVITING ME TO SPEAK ON THIS
TOPIC AND EVERYONE THAT HAS
CONTRIBUTED TO MAKING CP NETWORK
REGISTRY A SUCCESS.
>> THANK YOU TO OUR SPEAKERS,
THAT WAS A WONDERFUL SESSION, I
WANT TO THANK EACH REALLY
INDIVIDUALLY, IT'S BEEN
WONDERFUL SESSION, AGAIN MY NAME
IS ADAM HARTMAN, PROGRAM
DIRECTORS IN THE DIVISION OF
CLINICAL RESEARCH AT NINDS AND
CHILD NEUROLOGIST. WHAT I WANT
TO DO IS APPEARING IN TO THE
HOLLYWOOD SQUARES SCHEME HERE,
WE WILL START BY DOING A ROUND
ROBIN OF QUESTIONS INDIVIDUALS
AND THEN HAVE A GROUPED
DISCUSSION FOR FEW QUESTIONS
TOO. WE ARE GOING TO START WITH
DR. RAMEY, THE QUESTION WE HAVE
FOR YOU, IN ADDITION TO YOUR
PARENT PANEL, ARE YOU ALSO
ENGAGING ADULTS WITH CEREBRAL
PALSY PARTICULARLY THOSE
RECEIVED CONSTRAIN INDUCED
THERAPY?
>> ONE I MENTION WE FORMALLY
EMBEDDED IN RULES CHILDREN ONLY
AFTER 36 MONTHS OF AGE, WE DON'T
HAVE ADULTS THERE BUT IN OUR
HONE CLINIC AT VIRGINIA TECH WE
DO FREQUENTLY HEAR FROM ENGAGE
ADULTS AND THIS YEAR WE ARE
PROUD, SHE ALLOWS US TO SHARE
SOMEONE WHO RECEIVED REPEATED
TREATMENT HERSELF ENTERED BAMD
PROGRAM, UNIVERSITY OF
MINNESOTA. AND HIS -- HAS DONE
FUND RAIDING FOR RESEARCH IN
THIS FIELD AND HERSELF PLANS TO
BECOME A PHYSICIAN AND INNOVATOR
IN TREATMENT SO WE ARE FORMING
OUR OWN FRIENDS GROUP BUT THE
IDEA WE HEAR FROM CHILDREN WHO
HAVE GROWN UP AND SHARE THEIR
EXPERIENCES WONDERFUL AND YEARS
AGO WE DID A HANDBOOK ON
PEDIATRIC CIMT IN HISTORY, WE
INTERVIEW YOUNG MAN WHO HAD ONE
OF THE FIRST FORMS OF THIS YEARS
AGO FROM STEVE WOLF'S WIFE. HE
DESCRIBE HOW MISERABLE HE WAS
GETTING THAT HORRIBLE TREATMENT
FROM THAT MEAN LADY. AND
WONDERFUL THING IT WAS IN HIS
LIFE. LIVED EXPERIENCES, WHEN
CHILDREN ARE REALLY LITTLE THEIR
PARENTS SPEAK FOR THEM BUT ONCE
7 OR 8 THEY WANT TO SPEAK FOR
THEMSELVES AND WHOEVER MADE THAT
SUGGESTION I THINK WE SHOULD
WORK ON THAT AND I THINK THAT IS
SOMETHING THAT NIH IS
INCREASINGLY RECEPTIVE TO. IT IS
VERY IMPORTANT POINT.
>> IF YOU WOULD LIKE AS REMINDER
PUT YOUR QUESTIONS IN THE Q&A
BOX, PLEASE TELL WHICH SPEAKER
YOU WANT IT DIRECTED TO OR
MODERATOR PREROGATIVE AND SHOOT
IT TO EVERYBODY. SO NEXT
QUESTION IS FOR DR. STEELE.
QUESTION IS WHAT DO YOU THINK OF
IMMERSION COURSES TO GET
ENGINEERS TO APPRECIATE THE
LIVED EXPERIENCE CLINICAL NEEDS
OF PEOPLE WITH CEREBRAL PALSY
AND DISABILITIES IN GENERAL?
>> GREAT QUESTION. THERE WAS ONE
EASIER PRE-PANDEMIC. WHEN WE
THINK ABOUT IMMERSION IT IS NOT
JUST IN THE CLINIC, THAT'S WHERE
ESPECIALLY LATELY WE FOCUSED ON
COMMUNITY ORGANIZATIONS WHETHER
FOR ALL OR COVALENT OR CEREBRAL
PALSY ORGANIZATION, WITHIN THOSE
COMMUNITY ORGANIZATIONS CAN
PROVIDE OFTEN BOOK MORE
ACCESSIBLE AND MORE INCLUSIVE
THAN NECESSARILY FIZZ AL THERAPY
EARLY INTERVENTION OR CLINIC.
TRY TO GET ENGINEERS INTO CLINIC
OFTEN AS EARLY AS WE CAN BUT
EMPHASIZE THOSE COMMUNITY
ORGANIZATIONS AS WELL.
>> FANTASTIC. THANK YOU. THE
NEXT QUESTION IS FOR DR.
MOULTON. HOW DO WE ENSURE THAT
THE CDEs HAVE A VALIDITY THAT
CARRIES OVER INTO DIVERSE
POPULATIONS BECAUSE MANY WERE
DERIVED FROM NON-DIVERSE
POPULATIONS?
>> GREAT POINT. I THISSING THIS
SOMETHING WE NEED TO CONTINUE TO
LOOK AT AS THEY ARE UPDATED AND
I WOULD ENCOURAGE MEMBERS OF THE
COMMUNITY LISTENING IN TODAY AND
YOUR FRIENDS AND COLLEAGUES, IF
YOU SEE AREAS THAT YOU THINK ARE
PROBLEMATIC OR THERE ARE GAPS WE
WANT THAT CONVERSAT CONVERSATIOT
AS STEERING COMMITTEE REGULARLY
BUT NOT TWICE A YEAR AND TAKE
SERIOUSLY EVERY COMMENT WE GET
IN. AND HAVE OUR OWN AGENDA
THINKING ABOUT AREAS WE
SYSTEMATICALLY LOOK AT NEXT. SO
I WOULD ENCOURAGE THE FEEDBACK
ON AREAS WE CAN DO BETTER WE
WANT TO CONTINUE TO GROW AND
RESPOND TO NEEDS OF COMMUNITY.
>> FANTASTIC. NEXT QUESTION FOR
YOU. WHAT LESSONS WERE LEARNED
FROM OTHER REGISTRIES BEFORE
CEREBRAL PALSY REGISTRIES WERE
CREATED?
>> I THINK THE ADVICE OF DR.
SHABEL IN TERMS OF
IMPLEMENTATION CANADA WAS REALLY
IMPORTANT. HE EMPHASIZED THE
FUNDING MODEL AND COST OF
RECRUITMENT MODEL, THAT IN
ADDITION TO MY PRIOR EXPERIENCE
WITH A HYDRO SYPHILOUS REGISTRY,
WHERE WE WERE USING CLINICAL
RESEARCH ASSISTANCE TO COLLECT
ALL DATA, THOSE TWO THINGS
INFORMED OUR EXPERIENCE THE
MOST. MOST OF OUR REG -- OUR
REGISTRIES QUITE DIFFERENT FROM
MORE POPULATION BASED SOCIALIZED
MEDICINE REGISTRIES CAPTURING
EPIDEMIOLOGICAL DATA SO THERE
WAS LEARNING FROM THOSE
EXPERIENCES OTHER THAN THE COST
INFRASTRUCTURE AND BURDEN OF
DATA COLLECTION.
>> FANTASTIC. THANK YOU. GOING
BACK TO DR. RAMEY. COULD YOU
DISCUSS DOING RESEARCH WITH
RAPIDLY DEVELOPING CHILDREN AS
WE ALL KNOW THEY ARE
DEVELOPMENTS MOVING TARGET.
WHERE YOU NEED MORE
UNDERSTANDING OF CHANGE IN
BASELINE.
>> IT IS FINAL. YOU CAN'T STUDY
CHILDREN AND HAVE IT NOT
INFLUENCE DEVELOPMENT BUT THERE
IS NO DEVELOPMENT THAT OCCURS
WITHOUT A CONTEXT. I WONDER
ABOUT WHEN PEOPLE SAY WE ARE NOT
DOING A GOOD ENOUGH CHOUGH JOB
PREDICTING WHO IS GOING TO
DEVELOP OR SHOW CEREBRAL PALSY
IT MAY BE BECAUSE OF WHAT
HAPPENS AFTER THEY ARE IN MSCU.
MAY NOT BE WE ARE NOT PRECISE
ENOUGH, IT IS THIS DYNAMIC
INTERACTION CONSTANTLY CHANGES
THE CHILD. I DON'T THINK WE CAN
COMPLETELY SEPARATE IT. IT IS
IMPORTANT TO COMPARE TYPICALLY
DEVELOPING CHILDREN, CHILDREN
WITH DIAGNOSIS, THAT IS ONLY ONE
PERSPECTIVE. I WANT TO GO BACK,
IT IS CONTROVERSIAL BUT IN OUR
CLINICAL TRIALS, WE DO NOT
BELIEVE AND WE DO NOT ACCEPT THE
LIVED EXPERIENCE OR THE REPORT
OF PARENTS WE TREAT IT LIKE
ISN'T THAT NICE? I CAN TELL YOU
LEVEL OF REVIEWING GRANTS WE
DON'T GIVE IT THE KIND OF
IMPORTANCE. . SO I THINK WE NEED
TO BETTER LOOK AT WHAT ARE
EXPECTED TRAJECTORIES AND WHAT
IS TRANSFORMATIVE AND THERE MAY
BE AREAS IF WE KEEP TALKING
ABOUT THE IMPORTANCE OF OF
LOOKING AT FUNCTIONING
ENGAGEMENT PARTICIPATION, THERE
ARE GOING TO BE SUBJECTIVE
ASPECTS. WE HAVE TO SEE HOW DO
WE WEIGH THAT IN. THAT IS A
CHALLENGE FOR ALL OF MEDICINE.
IT IS NOT UNIQUE TO THE
POPULATION OF INDIVIDUALS WHO
RECEIVE A LABEL AND THEY CHOOSE
TO USE THAT LABEL OR NOT OF
CEREBRAL PALSY. IT IS VERY
COMPLICATED TO MEASURE BECAUSE
YOU DON'T HAVE THE SAME TWO
TOOLS AVAILABLE AT DIFFERENT
AGES TO SAY ARE THEY -- HOW MUCH
BETTER, WE CAN'T QUANTIFY SOME
OF THE IMPORTANT GAINS UNLESS WE
ARE WILLING TO RECOGNIZE THIS
SUBJECTIVE INTERPRETATION OF
SOME OF OUR OBJECTIVE NUMERICAL
DATA. FASCINATING.
>> SO DR. MOULTON, A QUESTION
FOR YOU, HOW DO WE ADAPT CD
COMMON DATA ELEMENTS TO THE
VIRTUAL REMOTE ENVIRONMENT IN AN
EFFICIENT MANNER? THIS IS A
PANDEMIC
>> I WOULD SAY THAT FOR A LOT OF
THEM THERE IS NO ADAPTATION
REQUIRED AS SUCH IN THE SENSE
THAT YOU CAN PRETTY EASILY LOOK
IN THE NOTICE OF COPYRIGHTS
WHICH ARE NOT NECESSARILY
RELATED TO COPYRIGHT I HAVE
LEARNED BUT GOLD MINES OF
INFORMATION, THE CLIFF NOTES OF
THESE DIFFERENT ASSESSMENTS. YOU
CAN USE THAT AS AN OPPORTUNITY
TO SEE HAS IT BEEN VALIDATED OR
IS THAT AN OPPORTUNITY FOR US.
SO CERTAINLY THIS IDEA OF MORE
REMOTE ASSESSMENT NOT ONLY IS
PANDEMIC PROOF AND HELPS IN
THESE TIMES OF GLOBAL
UNCERTAINTY BUT ALSO A GOOD
STRATEGY FOR IMPROVING THE
DIVERSITY OF OUR SAMPLE SET AS
NOTED BY SEVERAL OTHER SPEAKERS
DURING THE THIS WORKSHOP. BY
DIVERSIFYING THE WAY WE COLLECT
DATA IT PROBABLY WILL HELP US
MORE LONG RUN. THE KEY THOUGH IS
IF THERE ARE NEW TOOLS DEVELOPED
SPECIFICALLY WITH THIS IN MIND
WE KEEP UP WITH THAT ONCE
VALIDATED THEY CAN BE INTEGRATED
INTO THE COMMON DATA ELEMENTS.
WE HAVE A LOT OF ELEMENTS THAT
ARE EXPLORATORY IN NATURE
BECAUSE THEY ARE MAYBE NOT SO
WELL VALIDATED, IN THIS SPECIFIC
POPULATION OR NEED A LITTLE BIT
MORE EVIDENCE BEHIND THEM AND
NEW TOOLS COULD BE INTEGRATED IN
A SIMILAR WAY.
>> FANTASTIC. THERE IS A NEW
EFFORT AFOOT FROM FDAN AND
NUMBER OF OUR ORGANIZATIONS FOR
THESE CENTRALIZED CLINICAL
TRIALS WHICH HAS ONE OF THE
GOALS IS TO HAVE GREATER DEGREE
OF EQUITY IN TERMS OF
REPRESENTATION FROM ALL
DIFFERENT SEGMENTS OF THE
POPULATION IN THE U.S. AND THE
WORLD AS WELL. ONE MORE
INDIVIDUAL QUESTION, WE HAVE
GOOD NUMBER OF QUESTIONS ONE
MORE QUESTION FROM INDIVIDUAL
THEN DOING PANEL AND BACK
INDIVIDUALS COGNITIVE REST H.
ADAPTING TO THE NEW NIH DATA
SHARING REQUIREMENTS?
>> WE ARE DOING NUMBER OF THINGS
TO BE ABLE TO ENABLE THAT BUT IN
GENERAL WHEN WE PLAN FOR STUDY
WE RECENTLY SUBMITTED STUDY
DIDN'T GET FUNDED BUT GOT
FEEDBACK. WE BUILT INTO THE PLAN
DATA SHARING AMPLE TIME FOR
THAT. WE WORK ON THE CPCDE
COMMITTEE WE HAVE TO SHARE LARGE
NUMBER OF REGISTRY ELEMENTS, WE
ARE ALSO ADAPTING OURS TO MAKE
IT SO THAT WE ARE CONSISTENT
WITH THAT. LASTLY TALK
DEIDENTIFIED DATABASE WHICH IS
NOT OPEN TO PUBLIC BUT TO SITES
MEMBERS OF THE NETWORK. WE ARE
DOING A LOT ON DATA SHARING
BECAUSE WE FEEL DATA CREATED
THROUGH TAXPAYER DOLLARS OR GOOD
WILL OF PHILANTHROPY SHOULD BE
USED TO ACCELERATE DISCOVERY.
>> GREAT. THANKS. THIS IS GOING
TO BE A QUESTION FOR EVERYONE.
AND WE WILL START WITH YOU, DR.
RAMEY. BUILDING A TEAM THAT CAN
PRODUCE IMPACTFUL CLINICALLY
MEANINGFUL RESULTS. THIS IS ALSO
IMPORTANT TO OUR FAMILIES OUR
PATIENTS OUR RESEARCH
PARTICIPANTS HOW CAN WE MAKE IT
HOW DO YOU BUILD A TEAM THAT
WILL DO THAT? THIS IS FOR
EVERYONE.
>> I WOULD LOVE IT WOULD BE A
DREAM IF WE HAVE A CP RESEARCH
NETWORK AKIN TO WONDERFUL ONES
WE HAVE SEEN IN NINDS AND EUNICE
KENNEDY SHRIVER NICHD. WHETHER
IT SHOULD BE BROADENED OR AGAIN
BECAUSE OF THE WAY WE DEFINE CPE
BUT IF WE DO THAT WE CAN BEGIN
TO LOOK AT THINGS, THOSE THAT
ARE IN THE CDEs FOR CP BUT WE
HAVE A NEW EFFORT THAT IS NOW
ENTERING THE PUBLIC DISCUSSION
PHASE, NEW SET OF CDEs FOR
REHABILITATION, I WORKED ON BOTH
OF THOSE ENDEAVORS AND THAT
TAKES CARE OR BEGINS TO TAKE
CARE OF THE ADULT WHICH WAS WE
WERE TORMENTED AT AACPDM WHEN WE
COULDN'T DEAL WITH ADULTS BUT
ONLY DEAL WITH ONE AGE RANGE AT
A TIME BUT THE NEW ONE ON REHALF
ADDRESSES IT BUT TO GET WHAT
REALLY MATTERS, I THINK WE NEED
WORKING GROUPS ON THAT. AND WE
NEED LOTS MORE PARTICIPANTS. IF
I SAY NOT JUST FROM MAINSTREAM
WONDERFUL TRADITIONAL ADVOCACY
GROUPS BUT WE NEED THAT FULL
DIVERSITY IN TERMS OF
GEOGRAPHIC, IN TERMS OF ALL THE
OTHER DIMENSIONS OF RACE AND
ETHNICITY AND HISTORICAL
OPPORTUNITIES FROM PEOPLE WHO
HAVEN'T BEEN AT OUR TABLES. BUT
MEANINGFUL OUTCOMES ARE NOT THE
SAME FOR EVERYBODY. WE HAVE TO
THINK ABOUT THAT. BUT THE
QUESTION YOU JUST ASKED ADAM
ABOUT HAVING EVERYTHING BECOME
PUBLICLY AVAILABLE, IF WE REPORT
OUT ALL THE OUTCOME, ONE CAN
BEGIN TO LOOK AT THEM IN
DIFFERENT DIMENSIONS AND WHAT
YOU DO WITH DIVERSION RESULTS
TREATMENT EFFECT SOME THINGS BUT
NOT OTHER THINGS THEN BECOMES A
MATTER FOR COLLECTIVE ACTION
THAT TAKES IT BEYOND ONLY THE
IMPORTANCE OF SCIENCE AND
RIGOROUS DATA FROM WHICH WE THEN
WE MAKE COLLECTIVE DECISION
ABOUT ACTION.
>> THANK YOU, DR. STEELE.
>> A MILLION THINGS COME TO
MIND, SO ONE I THINK IS
SHORTENING OUR FEEDBACK LOOP ON
OUTCOMES, RIGHT NOW THESE
PROCESSES THAT YOU HAVE SEEN ARE
LONG AN MULTI-YEAR, IT MAKES
HARD TO INTEGRATE NEW IDEAS AND
TEST THEM OUT IN CLINIC AND IN
PRACTICE. AND GIVEN
HETEROGENEITY OF INDIVIDUALS
WITH CP BUT ALSO INDIVIDUALIZED
RESPONSES THAT WE SEE. NEW
ADVANCES IN MACHINE LEARNING AND
OTHER METHODS MAKE IT EASIER FOR
US DEVIATE FROM PROTOCOLS TO TRY
NEW THINGS QUICKER AND FASTER.
ANOTHER WE THINK ABOUT ENGINEERS
SPENDING MUCH TIME LOOKING AT
ENVIRONMENTAL AND SILOED
BARRIERS TO DISABILITY WITHIN
OUR PRACTICE AND HOW WE CAN
LIKEWISE WITH BE LEARNING FROM
AND INTEGRATING INNOVATIONS THAT
DISMANTLE ENVIRONMENTAL
BARRIERS: AND I WOULD LOVE TO
SEE LIKE NIH AND NSF PARTNER
TOGETHER FOR INITIATIVES LIKE
SMART CONNECTED HEALTH, AND LOVE
TO SEE SIMILAR BETWEEN HIPPOAND
NIDLER TO GET AT THESE
ENVIRONMENTAL PARTICIPATION
BARRIERS FASTER.
>> THANK YOU, DR. MOULTON YOUR
THOUGHTS.
>> I HAD COUPLE OF THINGS COME
TO MIND DEPENDING WHAT HAT
WEARING IN THE MOMENT, COMMON
DATA HE WILL ELEMENTS OR OTHERS
I LIKED HERS AN SHARONS. THE
THINGS THAT COME TO MIND FOR ME
WOULD BE WHEN YOU ASKED BUILDING
A TEAM ENSURING THAT THE TEAM
HAS A MULTI-DISCIPLINARY NATURE.
I THINK THERE IS REALLY A LOT OF
VALUE TO BE GAINED HAVING
PERSPECTIVES WHETHER
PROFESSIONAL TRAINING, LIVED
EXPERIENCE AND CREATIVE SKILL
SETS, BEST THINGS COME OUT WITH
A LOT OF DIFFERENT FOLKS AROUND
THE TABLE TALKING OR PLANNING OR
TRYING THINGS, EXPERIMENTING
REALLY. AND THE OTHER THING THAT
CAME TO MIND REFLECTING ON THIS
WAS THE IDEA OF MENTORSHIP AND
SOME GRATITUDE TOWARDS ALL THOSE
THAT ARE ON THE CALL MENTORS TO
ME OVER TIME AND JUST REALLY
FINDING ENCOURAGING AND
ENTHUSIASM IN PEOPLE THAT ARE
MAYBE JUST GETTING INTO THE
FIELD. AND THINKING ABOUT WAYS
TO LEVERAGE THAT ENERGY. AND
THOSE NEW IDEAS AND NEW WAYS OF
THINKING ABOUT THINGS. IF I WERE
TO PUT ON THE COMMON DATA
ELEMENTS HAT FOR THIS ONE AN
EXAMPLE WE SOMETIMES USE IN THE
COURSES WHEN TEACHING PEOPLE
ABOUT THESE IS IF YOU HAVE A
MEDICAL STUDENT YOU ARE WORKING
WITH THAT MAYBE GETTING TO LEARN
ABOUT CEREBRAL PALSY INITIALLY
AND WONDERS GOOD OUTCOME
MEASURES TO USE. KNOWING AND
SHARING THESE TOOLS, ACCELERATES
OUR ABILITY TO LEARN ABOUT THEM.
SO THAT WOULD BE ONE EXAMPLE IN
THE CDE WORLD.
>> THANK YOU, REPEAT THE
QUESTION QUICKLY. TIPS ON
BUILDING A TEAM THAT PRODUCE
IMPACTFUL AND CLINICALLY
MEANINGFUL RESULTS. MR. GROSS.
>> WHEN WE POLL THE NETWORK WE
FIND ONE OF THE MOST VALUED AS%
IS HOW TRULY MULTI-DISCIPLINE IT
IS THE GROUP IS. SO I THINK
FINDING A GROUP OF CLINICIAN
RESEARCHERS AND PARTNERING WE
ARE MOVING OUR DATA COORDINATING
CENTER TO PIT, WE HAD GREAT
SUPPORT AT THE UNIVERSITY OF
UTAH, I THINK OUR SUPPORTED PIT
FOR PROVIDING SOME OF THAT
METHOD LOGICAL GUIDANCE REALLY
YOU GET THE RIGHT COMBINATION OF
METHODOLOGY AND REAL WORLD
CLINICAL EXPERIENCE ACROSS
MULTIPLE DISCIPLINES. FINDING
YOUR PEOPLE WITHIN SOMETHING
LIKE OUR NETWORK OR WITHIN
AACPDM IS REALLY KEY. RELATED
QUESTION IS WHAT ROLE IF ANY HAS
INDUSTRY OR COMPANIES PLAYED IN
YOUR HOW YOU FORMULATE YOUR
TEAMS, PUT YOUR TEAMS TOGETHER?
COMPANIES AN INDUSTRY ROLE IN
YOUR TEAM?
WE WILL START WITH SHARON DO YOU
WANT TO GO FIRST?
>> I DON'T HAVE A LOT OF
EXPERIENCE OR REALLY PRETTY
GROUNDED IN MULTI-DISCIPLINARY
RESEARCH CENTERS. FUNDED BY NIH
AND A LOT OF WONDERFUL TRAINING
PROGRAMS. THAT ARE
TRANSDISCIPLINARY FROM NIH WHERE
WE GET OUR STUDENTS AND
COLLEAGUES. WE HAVEN'T WORKED
CLOSELY WITH INDUSTRY MUCH.
>> KAT?
>> -- OBVIOUSLY AS WELL. JUST --
I WOULD LOVE TO SEE THERE BEING
A MORE VIBRANT DIVERSE SET OF
INDUSTRIES THAT FOCUS AROUND
CEREBRAL PALSY. THERE IS
STARTING TO BE MORE OF THOSE
OFTEN SMALL COMPANIES BUBBLING
UP PROVIDING GREAT NEW
INNOVATIONS SO AS AN RESEARCHER
I CAN SEE ONE ROLE I PLAY IS TO
SUPPORT THOSE COMPANIES AND
PROVIDING UNBIASED AND
EXPERIENCES THAT NOT ONLY HELP
WITH REIMBURSEMENT BUT OTHER KEY
ISSUES. WE HAVE ALSO SEEN A
GREAT ENGAGEMENT FROM A LOT OF
THE LARGE TECH COMPANIES THAT
REALLY HAVE A STRONG FOCUS ON
NOT ONLY EDUCATION DISABILITY
STUDIES AND INCLUSIVE DESIGN
WHICH ARE JUST OUTSTANDING AND
BE GREAT MODELS FOR A LOT OF
GREATER RESEARCH COMMUNITY.
>> THANK YOU, THERESA.
>> UNIVERSAL DESIGN IS WHAT CAME
TO MIND, WE CAN COLLABORATE
EARLY INCLUDE COMPANIES IN OUR
THINKING ABOUT GAPS AND AREAS TO
ATHAT IT NOT ONLY SERVE IT IS
FOLKS WE KEEN TO MAKE IMPACT ON
THAT ARE LIVING WITH CEREBRAL
PALSY BUT EVERYBODY ALL OF US
CAN BENEFIT BY MAKING OUR WORLD
A LITTLE EASIER TO NAVIGATE WHAT
KAT WAS SAYING ABOUT
ENVIRONMENTAL INFLUENCES AND THE
ROLE THEY PLAY IN OUR CAPACITY
TO LIVE OUR GREATEST LIVES.
THAT IS SOMETHING WE DON'T
NECESSARILY DO WELL IN ACADEMIA
IS HARVEST LOWER AND MAYBE
METHODICAL IN THE WAY WE DO
THINGS IT MIGHT BE A BARRIER TO
EARLY ADAPTATION OR ADOPTION OF
GREAT IDEAS THAT COULD MAKE A
REAL IMPACT. SO IT IS A BALANCE
OF COURSE. THAT WOULD BE AN AREA
WE LEARN A LOT FROM INDUSTRY.
>> PAUL ROW INDUSTRIES AND
REGISTRIES.
>> WE SPENT FIRST FIVE YEARS
STIFF ARMING INDUSTRY BECAUSE WE
WANTED TO BUILD INDEPENDENT
BRAND SO WE WERE CAUTIOUS BUT WE
BELIEVE PARTNERSHIP IS CRITICAL
GOING FORWARD FROM
INFRASTRUCTURE PARTNERSHIPS LIKE
DATA VAN BOTH FUNDING OR
SCIENTIFIC CLAN RATION
PARTNERSHIPS WITH PHARMA AND WE
SEE EXTENDING THAT. WE HAVE HAD
JUST INDEPENDENT FUNDING SUPPORT
FROM DEVICE COMPANIES, AND SO WE
SEE A RANGE OF OPPORTUNITIES AND
WE ARE DEVELOPING THEM,
DEVELOPING STANDARD OPERATING
PROCEDURE HOW WE PARTNER WITH
INDUSTRY TO FIT WITH OUR VALUES
DO THINGS THAT ARE VALUABLE FOR
THE COMMUNITY.
>> GREAT. THANK YOU. SHARON DO
YOU WANT TO ADD SOMETHING?
>> ONE THING I THINK THIS COULD
BRING INDUSTRY IN AND HELP US
WITH THE ADULT RANGE OF OUTCOMES
AND QUALITY OF LIFE. DO WE ALL
REMEMBER WHEN NIH DIDN'T REQUIRE
WOMEN IN TRIALS? YOU NOW HAVE TO
DO IT AND ADDRESS THE RACIAL AND
ETHNIC DIVERSITY WHAT IF NIH
REQUIRED ANYONE WHO EXCLUDES
PEOPLE WITH DISABILITIES HAS TO
JUSTIFY WHY YOU ARE NOT
RECRUITING THEM IN TO YOUR
TRIALS OF EVERYTHING ELSE
RELATED TO HEALTH AND DISEASE,
SO ALL THE NEW TREATMENTS
DEVELOP YOU NAME THE TOPIC FROM
DIABETES AND CANCER ALL THE
THINGS THAT AFFECT THE
POPULATION GATHERED ABOUT THESE
TWO DAYS, THOSE INDIVIDUALS
AREN'T IN THE TRIALS. CAN WE GET
NIH TO REQUIRE ADEQUATE
REPRESENTATION, MIGHT BE
OVERSAMPLING OF CHILDREN AND
ADULTS WITH CP AND OTHER
DISABILITIES IN ALL OF OUR
STUDIES, THAT WILL BEGIN TO GROW
DATABASE FOR THINGS LIKE COMMON
DATA ELEMENTS AND WORK THAT PAUL
HAS DONE WITH REGISTRIES. WOULD
REALLY ACCELERATE HOW QUICKLY WE
CAN LEARN RATHER THAN SAYING IT
WILL TAKE US EXTRA TIME AND
MONEY TO INCLUDE A PERSON WHO
CANNOT DO A B C. THAT IS WHY IN
OTHER WORDS EXPEDIENCE SHOULDN'T
BE A REASON FOR HUMAN BEINGS OUT
OF ALL OF O YOU ARE RESEARCH AND
WE EXCLUDE INDIVIDUALS WITH
DISABILITY SYSTEMATICALLY AND IT
IS WRONG.
>> GREAT. THANK YOU FOR THE
THOUGHTS. SO ONE MORE GROUP
QUESTION THEN WE WILL GO BACK TO
ASKING INDIVIDUALS. SO THE
QUESTION IS WHAT ADVICE WOULD
YOU GIVE TO JUNIOR RESEARCHERS
WHO ARE COMING INTO THIS FIELD?
CEREBRAL PALSY? SHARON YOU CAN
GO FIRST AGAIN.
>> IT IS THE MOST EXCITING AND
-- IF THE PERSON LIKES REALLY
DIFFICULT TO SOLVE PROBLEMS AND
HOE AREN'T DIFFICULT AT ALL YOU
WANT TO SOLVE AMAZINGLY
COMPLICATED PROBLEM, AND BE
INTELLECTUALLY TURNED ON AND
ALSO GET UNBELIEVABLE THANKS
FROM INDIVIDUALS WITH LIVED
EXPERIENCE OVER TIME AND I JUST
LOVE CREATIVE WAY KAT FORWARD
WHEN BEST IDEAS DON'T WORK AND
BELIEVE ME SOME OF THEM DON'T,
WE LEARN ANYONE WHO LIKES TO
LEARN YOU CANNOT FIND ANYTHING
MORE STIMULATING THAN COMING
INTO THE FIELD OF WORKING WITH
INDIVIDUALS WHO DON'T FIT
TYPICALLY DEVELOPING. IT IS SO
THRILLING AND I SEE A LOT OF
PEOPLE SHY AWAY BECAUSE THEY
HEAR HOW COMPETITIVE FUNDING IS,
EVERYTHING GETS REJECTED, THEY
ARE CRITICIZED AND IF WE CAN
HELP THEM SAY IT IS WORTH
DEVELOPING A VERY THICK SKIN TO
LISTEN TO AND LEARN FROM ALL
POST CHRIS SCHISMS NOT ALL WHICH
ARE CORRECT BUT SOME WHICH ARE.
AND STAY WITH IT, IT IS -- AND
THE COMMUNITY OF PEOPLE
REPRESENTED BY PEOPLE YESTERDAY
AND TODAY IN THE AUDIENCE, ARE
JUST SUCH WONDERFUL HUMAN
BEINGS, I CAN'T THINK OF HAVING
HAD A MORE REWARDING CAREER. SO
IT IS THAT EXCITEMENT AND WE
HAVE TO NOT SCARE THEM AWAY AND
I THINK WE HAVE TO BE WILLING TO
TOLERATE MORE MISTAKES. OUR
FUNDING SITUATION IS A CONCERN
AND WE ARE GOING TO GET MORE
MONEY TO DO THIS ONLY IF THEY
COLLABORATE AND WORK WITH ONE
ANOTHER. INSTEAD OF COMPETE
WITHIN OUR OWN FIELD.
>> KAT. SHOULD I -- WHAT ADVISE
--
>> ONE IS JUST THE COMMUNITY IS
WONDERFUL AND THAT MY ADVICE
WOULD BE TO EMBED YOURSELF
WITHIN THE COMMUNITY. TO BROADEN
IT TO MANY OF THE OTHER
PEDIATRIC DISABILITIES AS WELL.
PEDIATRIC AND ADULT DISABILITIES
ACROSS THE LIFE SPAN FROM THE
BEGINNING, THE DEEPER YOU ARE
EMBEDDED THE EASIER TO TRANSLATE
EASIER TO IT RATE AND
FUNDAMENTALLY BE UNDERSTANDING
THE PROBLEM AND THE SCIENCE
BETTER. MORE FUN TO WORK WITH
EVERYONE.
>> THERESA.
>> I WOULD LIKE TO SAY I'M THE
YOUNG RESEARCHER NO LONGER
ACCURATE. MY TWO THINGS THAT I
WOULD BE THINKING ABOUT HERE
WOULD BE ALONG THE LINES OF WHAT
SHARING KAT AND SHARON MADE
FRIENDS BECAUSE IT IS MORE FUN
TO DO THIS WITH OTHER PEOPLE.
AND WE CAN ACHIEVE MORE WORKING
TOGETHER. THE OTHER THING WOULD
BE TO REMAIN CURIOUS, ONE OF THE
MOST CHALLENGING THINGS YOU CAN
DO IS IS FIND YOURSELF IN A
POSITION WHERE YOU KNOW
SOMETHING. IT TAKES CURIOSITY
OUT OF SITUATION, WE ARE BLINDED
TO POTENTIAL OF OTHER SOLUTIONS,
OTHER IDEAS AND THINGS THAT
MIGHT MEAN WE ARE WRONG. I AM
WRONG ABOUT A LOT OF THINGS, SO
I TRY TO REMAIN CURIOUS WHAT
MORE IS OUT THERE AND I THINK
THAT IS A GOOD IDEA FOR ALL
RESEARCHERS BUT YOUNG
RESEARCHERS TO KEEP IN MIND TO
ANSWER YOUR QUESTION.
>> WHAT ADVICE WOULD YOU GIVE?
>> ENCOURAGE PEOPLE TO START
WITH FINDING A PROBLEM IMPORTANT
TO COMMUNITY, THE RESEARCH
PAPER, OVERLAP THAT WITH
SYSTEMATIC REVIEW AND LOOK FOR
THINGS MORE EVIDENCE NEEDS TO BE
GENERATED FOR. I FIND COMMUNITY
PARTNERS IN ADDITION TO LOOKING
AT WHAT THE COMMUNITY HAS
DERIVED. , I SEEK TO FIND A
MENTOR IF BASIC TRANSLATIONAL OR
CLINICAL RESEARCH THROUGH AACPN
OR CPRN, IF YOU CAN STEER YOUR
CAREER, LAND AT CPRN CENTER YOU
ACCESS LOT OF DATA TO HELP YOU
AND PARTNERS TO HELP YOU IN
GRANT OPPORTUNITIES. AND
MENTORSHIPS.
>> THANK YOU. NOW INDIVIDUAL
QUESTIONS, FIRST QUESTION IS
GOING TO BE FOR KAT. DO YOU DO
RESEARCH ON ACCESSIBLE
PLAYGROUNDS?
>> NOT YET. FUN TOPIC AND
THERESA'S QUOTE WILL BE -- HER
LAST RESPONSE ER MINED ME OF THE
POST IT NOTE FROM ONE OF THE
CLINICAL PARTNERS WHO IT RATES
REMEMBER NO ONE INCLUDING US
KNOWS ANYTHING WHEN WE TALK
ABOUT CEREBRAL PALSY. I ALWAYS
KEEP THAT AS REMINDER. YOU MAY
SEE IT DECEMBER COURAGE -- AT
THIS COURAGING BUT IT IS
ENCOURAGING HOW MUCH BRAIN POWER
AND AWESOME COLLABORATION. SO
SHE REMIND MED OF THAT. THEN AS
FOR PLAYGROUNDS WE ARE LUCKY
HERE IN SEATTLE WE NOT ONLY HAVE
GREAT NETWORK OF PLAYGROUNDS BUT
WE HAVE CHILDREN'S PLAYGROUND
GARDEN AND VARIETY OF OTHERS AND
ONE OTHER CONSTRUCTED HERE,
SEATTLE CHILDREN'S HOSPITAL. IN
TERMS OF RESEARCH WE HAVE NOT
DONE ANY YET, WE HAVE AN
ORGANIZATION ACCESSIBLE DESIGN
AND PLAY TECHNOLOGY THAT ACCEPTS
DESIGN CHALLENGES AND WE HAVE
GROUPS OF ENGINEERS WORK ON
PROJECTS ALL YEAR. SO ANYONE CAN
SUBMIT A PROJECT ON THERE. I SAW
IN THE Q&A LINK TO YOUR
ORGANIZATION YOU WORK WITH AND
DEFINITELY CHECK THAT OUT. IT
IS DEFINITELY THE MORE WE TRY TO
GET OUT TO THE ENVIRONMENT AND
THINKING MORE ABOUT THE
PARTICIPATION AND ENVIRONMENTAL
BARRIERS INCLUDING INITIATIVES
LIKE ACCESS MAPS AND PROJECT
SIDE WALK, TO UNDERSTAND
ACCESSIBILITY, FOR EXAMPLE WITH
OUR GO BABY GO YOU GET GREATER
ACTIVITY IF YOU ARE CLOSER TO A
PLAYGROUND OR PARK WITH
ACCESSIBLE SIDE WALKS TO GET TO,
ALL REALLY FITS TOGETHER. NEXT
FUZZOR PUZZLE.
>> FASCINATING. THIS QUESTION IS
FOR ANYONE WHO WANTS TO TAKE IT,
DO YOU SEE DEVELOPMENTAL
COORDINATION DISORDER BEING
INCLUDED WITH CEREBRAL PALSY
RESEARCH IN THE FUTURE, THIS
POPULATION RARELY GETS DIAGNOSED
OR TREATED IN THE U.S. BUT
STUDIES SHOW IT MAYBE THREE
TIMES MORE COMMON IN CEREBRAL
PALSY IN THE PRETERM POPULATION
>> ONE THING WE HAVE BEEN DOING
ESPECIALLY WITH OUR EARLY STUDY,
MAKE THE INCLUSION CRITERIA AS
BROAD AS POSSIBLE, THIS IS ONE
REASON WHERE SEE TBI AND STROKE.
FOR SOME INTERVENTIONS TAKING
THAT INCLUSIVE AND I FORGET ONE
MENTIONED WITH HIE AND OTHER
PREEMIE DIAGNOSIS WHEN WRITING
IRB AND DESIGNING STUDIES WE CAN
LEARN MORE AND PARSE DIFFERENCES
BETWEEN THESE GROUPS IF YOU
CREATE A MORE INCLUSIVE
UMBRELLA. . MAYBE TWEAK YOUR
PROTOCOL A BIT BUT WE HAVE THE
TOOLS AND TECHNIQUES NOW TO
PARSE APART DIFFERENT
DEVELOPMENTAL EFFECTS AND WE TRY
TO BE INCLUSIVE AS POSSIBLE.
>> GREAT. CAN ALL OF YOU COMMENT
ON SILO AN REHABILITATION. WE
TALK ABOUT MULTI-DISCIPLINARY
EFFORTS BUT ARE WE MAKING
HEADWAY? SHARON START THAT ONE?
>> I THINK BECAUSE WE HAVE LONG
TRADITION OF DIFFERENT
DISCIPLINES, ESPECIALLY BECAUSE
NOW I WORK GREAT DEAL IN THOSE
FIRST FIVE TO EIGHT YEARS OF
LIFE CHILDREN DON'T DEVELOP IN
THOSE SILOS, CLOSER HOW THE
BRAIN IS FUNCTIONING, IT IS NOT
NEAT AND CLEAN. EVERYONE WAS
SURPRISED, MOTOR DRIVES
COGNITION. CHILDREN AND ALL
THESE NEEDS, WE USED TO WATCH
CHILDREN GO IN A WEEK ONE OR TWO
PT SESSIONS OR OT, THEY SEE
NUTRITIONIST, THEY ARE SEEING A
SPEECH OR COMMUNITY EXPERT, THEY
MIGHT HAVE SOMETHING NO DEAL
WITH PROSTHETICS AND SOMEONE IS
LOOKING AT THE CHILD IS SHY SO
WE BRING AND YOU THINK MY
GOODNESS, LOT OF COOKS IN THE
KITCHEN AND FOR DECADES I WORKED
TO SEE CAN WE CREATE AT LEAST
EARLY YEARS WE BELIEVE
NEUROPLASTICITY IS OPTIMAL
PERIOD, CAN WE UNITE NEW
DISCIPLINE FOR SCIENCE AND
PRACTICE WORKING WITH CHILDREN
WE HEARD IN THE LAST TWO DAYS
SOMEONE WHO COMBINES COGNITIVE
AND MOTOR THERAPY WHEN WE DO SIX
HOURS THERAPY AND FIND CHILDREN
WHO GET SMARTER AND TALK MORE,
WE ARE NOT DOING THAT BUT MT.
PROCESS OF HELPING USE THEIR ARM
AND HAND WE ARE PROBABLY
TEACHING A BUNCH OF STUFF AND
DIDN'T REALIZE IT. SO I LOVE TO
GET OUT OF THESE SILOS IS
NATIONAL ORGANIZATIONS H AND
SOMEONE SOME POINT WILL NEED TO
SAY IF I WENT AND OBSERVED WHAT
A PEDIATRIC PT AND PEDIATRIC OT
DOES WHEN WORKING WITH 18 MONTH
OLD WHO NEEDS TO IMPROVE
DEVELOPMENT IN MULTIPLE AREAS
CAN I GUESS MR. THE PERSON IS A
OT OR PT? YOU MIGHT BE
CHALLENGED SO WE HAVE TO BE
WILLING TO SAY NOT ONLY DO WE
HAVE MULTI-DISCIPLINARY TEAMS,
BUT CAN WE LET GO DOING THIS.
MANY PLACES IN THE WORLD OTPT
AREN'T SEPARATE THEY COMBINE
THEM AND I THINK WE NEED TO
THINK ABOUT BREAKING DOWN
CLINICAL DISCIPLINES SO THAT WE
HAVE SOMETHING A LITTLE BROADER
AND APPROACH SCIENCE THAT WAY,
PEOPLE DON'T WANT TO SAY HEY I
VOLUNTEER MY DEPARTMENT
DEPARTMENT OF X GO AWAY OR BE
SUBMERGED. I LED THE SENTERS
WHERE WE HAVE 8 TO 14 PEOPLE
MEETING ON EACH TRIAL AND I
DON'T MEAN THAT EITHER. I MEAN
THINKING DIFFERENTLY ABOUT WHO
YOU HELP PEEP GROWL AND REMAIN
HEALTHY. IT HAS TO BREAK DOWN
DIFFERENT DISCIPLINES.
>> THANK YOU, KAT.
>> AS OUTSIDE ENGINEER IT MAKES
NO SENSE TO ME AND I FIND IT
FRUSTRATING WHEN I SEE
ESPECIALLY EARLY
INTERVENTIONICALLY MICKS IS A
BIG PART THE LAST FEW DAYS, WE
HAVE PTs, OTs, SLP E IF YOU
ARE LUCKY YOU WILL FIND -- CAN
GIVE YOU SOME SERVICE AND THEN
PMRs AND DEVELOPMENTAL DOCS
AND PARENTS HAVE TO MANAGE THE
NEUROSURGEON AND ORTHOPEDIC
SURGEON, IT IS THE PARENTS
MANAGING THIS, IT CAUSES ME
STRESS WHEN I SAY IT SESSIONS SO
FOR RESEARCH PERSPECTIVE WE ARE
LUCKY WE CAN HAVE THE FLP, THE
PT, AND OT, NEEDS ARE IN THE LAB
AND IT IS FANTASTIC BUT
CONFUSING FOR THE PARENTS AND
ESPECIALLY EARLY INTERVENTION
SETTINGS. MY UNDERSTANDING IS
THEY HAVE TO MAKE THE CHOICE
THIS CHILD NEEDS PT OR THIS
CHILD NEEDS OT SLT FROM A
FUNDING PERSPECTIVE AND REALITY
THEY NEED SOME COMBINATION.
EXCITED TO GIVE OUTSIDE ENGINEER
PERSPECTIVE OF MY OBSERVATIONS.
>> THERESA.
>> THE THING THAT CAME TO MY
MIND THINKING ABOUT THIS
QUESTION WAS THE FOLKS THAT
AREN'T IN THE ROOM AND AUDIENCE
I THINK WE PROBABLY ON AVERAGE
REPRESENT COMMUNITY OF
INDIVIDUALS PROBABLY WELL
CONNECTED WITHIN SYSTEMS, WHERE
YOU AT LEAST KNOW SOME OF THESE
OR PEOPLE ARE, YOU MENTIONED ALL
THOSE FOLKS AND YOU KNOW THEM
AND MAYBE FOR TIME YOU DON'T GET
TO TALK TO THEM BUT I'M THINKING
COMMUNITY PROVIDERS IN HOME OR
SCHOOL, WHERE THEY MAY BE DON'T
HAVE MENTORSHIP OPPORTUNITIES WE
WERE TALKING ABOUT WHERE TIME IS
REALLY THE BIGGEST CONCERN AND
DELIVERING NON-EVIDENCE BASED
CARE SO I THINK THAT THAT IS
SOMETHING IMPLEMENTATION SCIENCE
DOMAIN, MAYBE REACHING TO OUR
COLLEAGUES AND BREAKING DOWN
THAT COMMUNICATION GAP SO THERE
IS A LITTLE BIT MORE CARE
COORDINATION.
>> PAUL THE LAST ON THIS AND
THEN ONE QUICK FOLLOW-UP
QUESTION FOR PAUL AS WELL.
>>
>> WE START WITH REGISTRY AND
DEFINE FORMS THAT GO INTO THE
ELECTRONIC MEDICAL RECORD AND IT
IS DONE AS THIS COLLABORATIVE
PROCESS WE HAVE LOOKED AT
EVERYBODY'S NEEDS, BRING THEM
TOGETHER, DATA TO PULL FORWARD
FROM PT NOTE INTO PMNR NOTE. WE
ARE STARTING WITH COLLABORATIVE
IN TERMS OF CLINICAL CARE AND
THE WAY WE COLLECT DATA. WHEN
CONDUCTING RESEARCH THE NATURE
OF WHAT WE DO, ANNUAL RESEARCH
MEETING LIKE NOAH'S ARC LIKE
FOUR BY FOUR BY FOUR BY FOUR OF
EVERY DISCIPLINE WORKING
TOGETHER ON EVERY STUDY THE
PURPOSE PROOF IS IN THE PUDDING
AND WE HAVE TO DO MORE STUDIES
TO GET THAT COOPERATION
MULTI-CENTER STUDIES BUT WHICH
ARE WORKING HARD TO BREAK DOWN
BARRIERS AND GETTING POSITIVE
RESPONSE TO ENGAGED INTEREST OF
NEUROSURGEON IN PT OUTCOMES OR
PHYSICAL SELECTION INTERVENTION,
ALL LOOKING POSITIVE BUT IT WILL
TAKE TIME TO CONFIRM, IT IS
REALLY THERE.
>> PAUL LAST QUESTION FOR YOU.
WHAT IS THE BEST WAY FOR ADULTS
WITH CEREBRAL PALSY TO JOIN
RESEARCH NETWORK TO GET INTO
REGISTRY?
A. DID PEOPLE GO TO CPRN.ORG
IT'S MY CP IN THE UPPER RIGHT
HAND CORNE CORNER. THEY CAN CLIN
THAT AND FILL IN A SURVEY, FREE,
CONFIDENTIAL AND IF THEY SIGN
INFORMED CONSENT OR CLICK ON IT
STUDIES THAT ARE RELEVANT TO
THEM. AT FIVE O'CLOCK MOUNTAIN
TIME WE ARE PAUSING STUDIES
TRANSITIONING OUR INFRASTRUCTURE
FROM UTAH TO PIT. SO COUPLE OF
WEEKS THE STUDY IS NOT ACTIVE
BUT FORM IS ACTIVE, PERSONALIZED
WEB SERVICES ARE ACCURATE SO YOU
JOIN WHEN WE ARE BACK ONLINE OR
TAKE IT BETWEEN NOW, FIVE P.M.
MOUNTAIN.
>> I WANT TO THANK OUR
PANELISTS, THE TALKS WERE
WONDERFUL, DISCUSSION IS
PHENOMENAL AND DID NOT
DISAPPOINT AS ANCHOR LEG IN OUR
MARATHON RELAY. SO WANT TO THANK
YOU, DR. RAMEY STEELE MOULTON
AND GROSS, THANKS A MILLION
BEING PART OF THIS PANEL AND FOR
THINKING THROUGH THE CHALLENGING
COMING UP. IT IS A PLEASURE TO
INTRODUCE DIRECTOR OF THE
NATIONAL INSTITUTE OF
NEUROLOGICAL DISORDERS AND
STROKE, DR. WAHL TEAR KOROSHETZ.
WHO IS LISTENING IN AND IS GOING
TO PROVIDE US WITH SOME COMMENTS
FOR FEW MINUTES. DR. KOROSHETZ.
>> THANK YOU, ADAM. INCREDIBLY
IMPRESSED BY WHAT I HAVE BEEN
HEARING THE LAST TWO DAYS. THE
MOST IMPORTANT THING I HEARD WAS
THAT REALLY GREAT COMMUNITY TO
WORK IN. THAT IS THAT MEANS A
LOT AND WILL HELP YOU GROW AND
GET THE PEOPLE YOU NEED TO MAKE
PROGRESS. HEALTH PROBLEM NO
QUESTION ABOUT THE TOUGHNESS OF
THESE PROBLEMS. I WANT TO START
BY SAYING NINDS AND NICHD HAVE
TREMENDOUS PARTNERSHIP HERE WITH
REHAB SIDE AND NEUROSCIENCE SIDE
COMING TOGETHER. ALMOST BEST IN
THIS INSTANCE AN ANYTHING ELSE I
CAN THINK OF. COUPLE OF
REFLECTIONS REALLY PLEASED TO
HEAR ABOUT CP ACROSS THE LIFE
SPANISH SHOES THERE ARE AS MARK
MENTIONED MORE ADULTS WITH CP
THAN CHILDREN BECAUSE ADULTS
STARTS AT 18 AND GOES A LONG
TIME. AND THE ISSUES THAT NEED
TO BE TACKLED THERE, A LOT OF
INSTITUTES COULD BE ENGAGED IN
THAT. I COULD SAY I RUN THE HEEL
INITIATIVE, HELPING TO END
ADDICTION LONG TERM WHICH IS A
BIG PAIN COMPONENT AND ONE OF
OUR PROJECTS IS ACTUALLY TRYING
LOOKING AT ACUTE TO CHRONIC PAIN
AND HOW TO INTERVENE OR PREVENT
THAT TRANSITION IN ADOLESCENTS
WHO HAVE SPINAL SURGERY FOR
THEIR SCOLIOSIS. SO I THINK
PAIN SOMETHING THAT IS WELL
RESOURCED BECAUSE OF THESE NEW
FUNDS TO THE HEEL INITIATIVE AND
COULD BE OTHER OPPORTUNITIES TO
LOOK AT PAIN IN THE CP
COMMUNITY. I THINK PAUL PUT OUT
NICELY COUPLE OF OTHER PEOPLE,
THE COMMUNITY OF PEOPLE WITH CP
WANT TO BE PART OF RESEARCH AND
NOT JUST THE SUBJECT BUT PART OF
THE DESIGN STAGE, BE PARTNERS
RANKED THROUGH RESEARCH SO
ENCOURAGE PEOPLE TO DO THAT AS
-- I THINK IT PROBABLY MAKES
RESEARCH MORE FULFILLING TO THE
INVESTIGATORS TO HAVE GOOD
PARTNERS WHO HAVE LIVED
EXPERIENCE. IN TERMS OF THE
SCIENCE WE HAVE FOCUSED ON HOW
DO WE PREVENT HYPOXIC ISCHEMIC
INJURY IN UTERO OR AROUND
DELIVERY AND WE HAD INVESTMENT
ON LIPO POIETIN. ERYTHROPOIETIN
BUT IT DOESN'T LOOK LIKE IT WILL
BE HELPFUL SO EVE WITH TO
RETHINK HOW TO GET THERE, CAN'T
GIVE UP, HAVE TO BE MORE CLEVER
TO PROTECT THE BRAIN DURING THIS
VULNERABLE PERIOD THAT LEADS TO
CP. AFTER REHI THE ANIMAL
MODELS, THAT LOOKED GOOD BUT
DIDN'T WORK IN HUMANS. THAT IS
NOT -- UNFORTUNATELY NOT A
PROBLEM JUST WITH CP THAT
TRANSITION FROM THE RODENT TO
HUMAN IS PLAYING OUT IN OTHER
DISEASES AS WELL. WE DO HAVE
THIS POPULATION AT HIGH RISK
PREMATURE INFANTS AND SO
LEARNING HOW TO PROTECT THEM IS
GOT TO BE PREVENTION WHERE YOU
HAVE YOUR BIGGEST EFFECT SIZE.
THE OTHER INTERESTING THING
WHICH IS THE HOW GENOMICS IS
MAKING A BIG HEAD ROAD INTO
CEREBRAL PALSY WHERE BINDING
MUTATION SO AGAIN MENTAL
DISORDER IS NOT DUE TO SINGLE
EVENT LIKE HYPOXIC EPISODE OR
STROKE. BUT THAT IS A NEW AREA
OF UNDERSTANDING AND ALSO LEADS
TO THE IDEA IDENTIFY GENES
PEOPLE TALKED ABOUT N EQUAL 1
TRIALS BUT NOT ONLY THAT
POTENTIALLY TREATMENT THAT
EITHER REPLACE A GENE NOT
WORKING WELL OR GET RID OF GENE
THAT IS HARMFUL DUE TO MUTATION
WE ARE JUST BEGINNING THE
SCIENCE, WE HAVE A URGENT ULTRA
RARE NEUROGENETIC DISORDERS TO
DEVELOP GENE THERAPIES. SO
HOPEFULLY ONE OF THESE DAYS WE
CAN THERE WILL BE A STRONG
RATIONALE MOVING GENETIC
THERAPIES TO SOME OF THE PARSE
OUT WITH THE IDENTIFIED
MUTATIONS. IF YOU TRY TO MAKE A
DIFFERENCE, NEED TO KNOW WHAT IS
GOING ON IN T BRAIN AND HOW YOU
CAN MAKE THAT CHANGE COMPENSATE
FOR IT OR YOU CAN PREVENT CHANGE
FROM HAPPENING SO WHAT IS GOING
ON IN THE BRAIN. THERE IS
AMAZING TECHNOLOGIES LOOKING AT
CIRCUITS AND CLEARLY, CEREBRAL
PALSY IS A CLASSIC CIRCUIT
ABNORMALITY. IN THE MOTOR
CIRCUIT DOMAIN. SOME OF THOSE
ARE EASY TO STUDY. SO TRYING TO
USE TECHNOLOGIES TO UNDERSTAND
DEVELOPMENTAL PROCESS AND NORMAL
AND WHAT HAPPENS IN CP COULD
HAVE SOME REALLY INTERESTING
BENEFIT. RIGHT NOW WE HAVE
IMAGING TANTALIZING IN DIFFUSE
WHITE MATTER INTENSITY,
DIFFUSION TENSOR IMAGING THEN
HEARD ABOUT THE EEG INFRARED
SPECTROSCOPY IN MOVING PEOPLE,
KIDS, SO ADVANTAGE IS THERE
POTENTIALLY IDENTIFY BIOMARKERS
THAT CAN BE USED AS TARGETS FOR
TREATMETREATMENT. TRY TO DEVELOP
TREATMENT, THERE ARE TREATMENT
WE TALKED EARLY INTERVENTION
LIKE MANY DISORDERS, THE BRAIN
SEEMS TO RESPOND THE EARLIER THE
ENTERRECOMMENDATION IS. AND SOME
INTERESTING THINGS, SEE IF THEY
PAN OUT, TRANSCRANIAL
STIMULATION, VAGAL NERVE
STIMULATION. THANKS TO DR. RAMEY
AND LOWE WE HAVE THE I ACQUIRE
TRIAL THROUGH STROKE NETWORK.
CONSTRAINT BASED THERAPY.
INFANTS 8 TO 36 MONTHS OLD WHO
SUFFER A STROKE WE KNOW WHAT WE
ARE DOING WE HAVE TO BE MORE
CLEVER, IT IS A HARD PROBLEM, WE
WANT TO MAKE A DIFFERENCE FOR
PEOPLE EVEN IF A SMALL
DIFFERENCE BUT CLINICALLY
MEANINGFUL, WE ALSO WANT TO
DRIVE FOR TREATMENT THAT HAVE
BIG EFFECT SIZES AS WELL. I
THINK WITH THE COMMUNITY WORKING
TOGETHER BUILDING THE CDEs
WORKING ON THE REGISTRY, THAT --
PUT TOGETHER, AND THE ENERGY
PASSION WE HEARD ABOUT OVER THE
LAST TWO DAYS, I WOULD BE
OPTIMISTIC ABOUT FUTURE AND
CERTAINLY NINDS AND NICHD NCMRR
ARE HERE TO MAKE THAT HAPPEN FOR
YOU. WITH THAT I WANT TO END BY
THANKING PEOPLE THAT WORKED ON
THE SESSIONS, (LISTING NAMES)
FROM NICHD, RACHEL ANDERSON AND
CAROL WONG. THANKS AGAIN FOR ALL
THE GOOD THINKING THAT YOU
SHARED WITH US THE LAST TWO
DAYS. AND WITH THAT, I THINK WE
ARE DONE. I THINK THAT IS THE
END. THANK YOU SO MUCH,
EVERYBODY. HAVE A GREAT EVENING
DON'T FORGET TO SIGN UP BY FIVE
MOUNTAIN TIME.
>> THANK YOU WALTER FOR THE
WONDERFUL COMMENTS AND THANKS
EVERYBODY FOR PARTICIPATING FOR
THE LAST COUPLE OF DAYS. WE ARE
ADJOURNED AT THIS POINT AND HOPE
Y'ALL HAVE A WONDERFUL EVENING
AND ENJOY THE REST OF YOUR DAY.
THANK YOU.