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.