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WELCOME TO DAY TWO OF
THE NIH

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WORKSHOP ON CEREBRAL PALSY

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RESEARCH. WE WILL WAIT A FEW

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MINUTES AS PEOPLE JOIN ON TO US

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THROUGH THE VIDEOCAST SITE. 

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PLEASE BE PATIENT, WE'LL START

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IN A FEW MINUTES. GLAD YOU ARE

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BACK FOR DAY TWO. AGAIN THIS IS

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DAY TWO OF THE NIH WORKSHOP ON

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CEREBRAL PALSY RESEARCH. WE WILL

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START IN A FEW MORE MINUTES AS

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MORE PEOPLE JOIN US FROM THE NIH

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VIDEOCAST SITE. WE HAVE A GREAT

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MORNING PRESENTATIONS AHEAD OF

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US. AND WE WILL BE STARTING

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SHORTLY.  LET'S GET STARTED.

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GOOD MORNING. I AM RALPH NITKIN,

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THE DEPUTY DIRECTOR OF THE

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NATIONAL CENTER FOR MEDICAL

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REHABILITATION RESEARCH LOCATED

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WITHIN THE EUNICE KENNEDY

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SHRIVER NATIONAL INSTITUTE OF

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CHILD HEALTH AND HUMAN

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DEVELOPMENT. ALONG WITH MY

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COLLEAGUES FROM THE NATIONAL

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INSTITUTE OF NEUROLOGICAL

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DISORDERS AND STROKE I WOULD

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LIKE TO WELCOME YOU BACK TO DAY

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TWO OF OUR WORKSHOP ON CEREBRAL

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PALSY RESEARCH. TO REITERATE THE

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PURPOSE OF THE TWO DAY WORKSHOP,

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PROVIDE UPDATE ON CURRENT

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RESEARCH IN CEREBRAL PALSY AND

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ESPECIALLY HOW IT RELATES TO THE

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NIH TENURE STRATEGIC PLAN ON

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CEREBRAL PALSY RESEARCH

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PUBLISHED IN 2017 YESTERDAY DAY

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ONE WE HEARD BACKGROUND ON

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INCREASING SCOPE OF CEREBRAL

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PALSY RESEARCH AROUND THE NIH

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AND IN THE CONTEXT OF THIS

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RESEARCH PLAN. THEN WE START

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WITH THE VOICE OF THE

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PARTICIPANT, TWO ENTHUSIASTIC

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TALKS FROM THE AS VOW CHASSI AND

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PERSONAL SIDE AND THEN SIX

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OUTSTANDING PRESENTATIONS THAT

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HIGHLIGHTED RESEARCH ADVANCES IN

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STRATEGIC AREA ONE BASIC

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TRANSLATIONAL RESEARCH FOLLOWED

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BY A LIVELY DISCUSSION OF YOUR

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AUDIENCE QUESTIONS THEN BRIEF

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WRAP UP OF DAY ONE. THE WHOLE

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SESSION AND TODAY'S SESSION AS

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WELL WILL BE ARCHIVED ON THE NIH

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VIDEOCAST SITE AVAILABLE IN A

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FEW DAYS. THIS MORNING SESSION

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WILL FOCUS ON STRATEGIC PRIORITY

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AREA TWO, CLINICAL RESEARCH

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ADVANCES. PRIORITIES IN THIS

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AREA INCLUDE CONSIDER THE WHOLE

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LIFE SPAN. ENHANCE THE TREATMENT

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OPTIONS, REVISIT AND UPDATE

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STUDY DESIGNS IN THE FIELD. AND

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DEVELOP BETTER DATA METRICS.

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THIS WILL BE FOLLOWED BY AN

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AFTERNOON FINAL SESSION ON

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STRATEGIC PRIORITY AREA THREE

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WORK FORCE AND RESOURCE

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DEVELOPMENT. SO THE SCHEDULE FOR

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THIS MORNING SESSION ON CLINICAL

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RESEARCH IS AS FOLLOWS:  STACEY

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DUSING FROM THE UNIVERSITY OF

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SOUTHERN CALIFORNIA WILL START

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OUT WITH A PRESENTATION ON

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PHYSICAL THERAPY INTERVENTIONS

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FOR YOUNG CHILDREN. KATHERINE

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HOUSTON FROM THE UNIVERSITY OF

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WISCONSIN WILL DISCUSS THE ISSUE

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OF COMMUNICATION DEVELOPMENT IN

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CHILDREN WITH CEREBRAL PALSY.

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DIANE DAMIANO FROM OUR OWN NIH

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CLINICAL CENTER WILL DISCUSS

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TECHNOLOGIES FOR ASSESSMENT AND

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FUNCTIONAL RESTORATION.

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MARKETEER PERSON UNIVERSITY OF

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MICHIGAN WILL DISCUSS

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UNDERSTANDING THE HEALTHCARE

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NEEDS FOR ADULTS WITH CEREBRAL

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PALSY. AND ZACH VESOULIS FROM

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THE WASHINGTON UNIVERSITY ST.

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LOUIS WILL FINISH THE SESSION

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WITH A DISCUSSION ON RACIAL

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DISPARITIES IN CEREBRAL PALSY.

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I'M SURE EACH OF THESE TWO

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MINUTE PRESENTATIONS WILL

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STIMULATE MUCH DISCUSSION AND WE

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DISCOURAGE YOU TO TYPE YOUR

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QUESTIONS UNDER THE QUESTION AND

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ANSWER TAB AT THE BOTTOM OF THE

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SCREEN OR IF YOU ARE WATCHING ON

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THE NIH VIDEOCAST SITE PLEASE

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TYPE QUESTIONS INTO THE LIVE

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FEEDBACK BUTTON. FOLLOWING THESE

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FIVE PRESENTATIONS THE SPEAKERS

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WILL ADDRESS YOUR QUESTIONS

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DURING THE DISCUSSION PERIOD

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THAT FOLLOWS ALL FIVE TALKS. SEW

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WITH THAT LET'S GETS STARTED. 

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>> GOOD MORNING. THANK YOU
FOR

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HAVING ME HERE TODAY. I'M STACEY

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DUSING, FAMILY CHAIR PEDIATRIC

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PHYSICAL THERAPY HEALTH AND

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DEVELOPMENT, UNIVERSITY OF

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SOUTHERN CALIFORNIA. I'M EXCITED

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TO BE HERE TO TALK THERAPY

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INTERVENTIONS FOR INFANTS AND

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YOUNG CHILDREN WITH CEREBRAL

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PALSY. I'M GOING FOCUS ON THREE

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AREAS TODAY, AS I HIGHLIGHT THE

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PROGRESS WE HAVE MADE IN THIS

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FIELD.  FIRST IS THINK ABOUT

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EFFECTIVENESS OF INTERVENTION

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AND WHAT IS A NEW ERA OF EARLY

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DETECTION IN CEREBRAL PALSY. WE

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WILL TALK POLICY RELATED ISSUES

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AND HOW THIS IMPACTS THE

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UTILIZATION OF OUR EVIDENCE, AS

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WELL AS THE INTERVENTION HEARSAY

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PRIOR TO DIAGNOSIS, BUT YOU MAY

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WANT TO CONSIDER IF WE ARE

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TRYING TO LOOK FOR BEST PRACTICE

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FOR SUPPORTING POPULATIONS OF

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CHILDREN. OR HIGH RISK FOR

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CEREBRAL PALSY. SO I ALWAYS WANT

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TO TAKE INTO CONSIDERATION WHEN

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MAKING MY DECISIONS FROM A

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RESEARCH PERSPECTIVE AS WELL AS

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CLINICAL PERSPECTIVE PUT THE

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NEEDS OF PARENTS AND FAMILIES

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ARE. FOR 25 YEARS I WORK WITH

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INFANTS HIGH RISK OF CEREBRAL

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PALSY AND HAVE SEEN SOME COMMON

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QUESTIONS COME ACROSS. FIRST

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WHEN SHOULD I START THERAPY, HOW

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CAN I AS A PARENT HELP MY BABY

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NOW AS EARLY AS THE NEONATAL

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INTENSIVE CARE UNIT PARENTS WANT

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TO HELP AND SUPPORT THEIR BABY.

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AS CHILDREN GET OLDER

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PARTICULARLY NOW WHEN WE HAVE

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THE EARLY DIAGNOSIS OF CEREBRAL

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PALSY, PARENTS ARE LOOKING FOR

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GUIDANCE ON WHICH INTERVENTION

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IS BEST FOR THEIR CHILD. WE KNOW

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THERE ARE PLETHORA OF

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INTERVENTIONS OUT THERE

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PARTICULARLY WHEN WE LOOK AT THE

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INTERNET AND SEE SOMEONE A WIDE

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VARIETY OFFER LACK OF EVIDENCE

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BASED INTERVENTIONS THAT ARE

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PRESENT M. PARENTS NEED

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GUIDANCE. LAST, PARENTS ARE ALSO

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INTERESTED IN WHAT HAPPENS IF

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THEY DELAY. SOMETIMES IT IS NOT

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THE RIGHT TIME FOR OUR FAMILY TO

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START INTERVENTION AND SOMETIMES

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THEY NEED TO KNOW WHAT THE

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CONSEQUENCES COULD BE IF THEY

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DIDN'T DISCERN THE INTERVENTION

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NOW AND DELETE IT. SO WE NEED

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SOLID INTERVENTION WHEN IS THE

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BEST TIME AND WHAT THE

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CONSEQUENCES ARE IF THEY DON'T

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START INTERVENTION NOW. WE THINK

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ABOUT EARLY DETECTION THE MOST

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COMMON THING WE LOOK AT IS THE

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NEWBORN SCREENING PROCESS IN THE

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UNITED STATES. THE NEWBORN

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SCREENING PROCESS STARTS OUT BY

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IDENTIFYING INFANTS AT HIGH RISK

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OF METABOLIC DISORDERS AND

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SIMILAR DISORDERS THAT CAN BE

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DETECTED AT BIRTH. HOWEVER, IF

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YOU LOOK AT THE EVOLUTION OF

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EARLY DETECTION PROGRAM, OVER

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THE LAST 30 TO 40 YEARS,

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INFORMATION IS NOT ADDED TO THE

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EARLY DETECTION GUIDELINES UNTIL

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INTERVENTION IS AVAILABLE. WE

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ARE IN THE SAME PLACE WHEN WE

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LOOK AT CEREBRAL PALSY. THE

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UTILIZATION OF THIS EARLY

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DETECTION GUIDELINE HAS BEEN

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VERY SLOW TO UPTAKE IN THE

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UNITED STATES. AND PIECE OF THIS

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I HEAR FROM CLINICIANS AND AND

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RESEARCHERS AROUND THE COUNTRY

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DOES IT MATTER? IF YOU IDENTIFY

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THE CP EARLY IS IT GOING TO

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CHANGE YOUR COURSE OF TREATMENT?

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FOR THOSE UNDER FIVE MONTHS OR

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THOSE OVER FIVE MONTHS. I'M HERE

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TO SUGGEST IT SHOULD CHANGE FOR

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THE COURSE OF TREATMENT FOR THAT

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CHILD BUT WE NEED MORE

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INFORMATION. WHEN WE LOOK AT

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THIS GRAPHIC, ON THE LEFT IS THE

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REPRESENTATION OF THE ARTICLE

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PUBLISHED BY (INAUDIBLE) IN

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2013. I WANT TO HIGHLIGHT HERE

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EARLY INTERVENTION WAS RATED AS

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YELLOW OR A PROBABLY DO IT BUT

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WE DIDN'T HAVE SOLID EVIDENCE

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FOR THE FIELD. LOOKING AT 2020

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AT THE UPDATE OF THIS ARTICLE WE

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STILL SEE THAT EARLY

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INTERVENTION CUP ALL IN YELLOW,

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WITHOUT SOLID EVIDENCE FOR

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INTERVENTION TO SUPPORT MOTOR

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FUNCTION IN AN EARLY

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INTERVENTION SETTING. ONE OF THE

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CHAT LENGS OF INFANT RESEARCH IS

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MANY RESEARCH IDEAS AND

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INTERVENTIONS COME FROM ADULT

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LITERATURE AND PASS DOWN TO

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OLDER CHILDREN, PRIOR TO

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IMPLEMENTATION AND YOUNG

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INFANTS. THEY MAY NOT BENEFIT

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FROM THE SAME INTERVENTIONS

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SCALED DOWN. THAT WE SEE IN

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ADULT POPULATIONS. WE NEED

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INTERVENTIONS THAT ARE

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SPECIFICALLY DESIGNED FOR THESE

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YOUNG INFANTS.  MANY READ THE

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PAPERS AND SEEN INFORMATION ON

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USE OF NDT IN NEURODEVELOPMENTAL

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TREATMENT IN CHILDREN WITH

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CEREBRAL PALSY. I WANT TO POINT

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OUT THIS ANALYSIS PUBLISHED THIS

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YEAR IN 2022, REITERATING THE

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FINDINGS FROM PAST META ANALYSES

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SUGGESTING NDT IS NOT EFFECTIVE,

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NOT COMPARED AGAINST ANY THERAPY

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THEY LOOKED AT INCLUDING

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ACTIVITY BASED INTERVENTIONS AND

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BODY STRUCTURE AND FUNCTION

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WHICH WILL GO BETTER THAN NDT

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AND NDT COMPARED AGAINST NO

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THERAPY OR HIGH OR LOW DOSE,

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SHOW NO DIFFERENCE. THIS

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SUGGESTS NEURODEVELOPMENTAL

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TREATMENT IS NOT AN APPROPRIATE

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INTERVENTION FOR CHILDREN WITH

255
00:10:20,783 --> 00:10:23,052
CEREBRAL PALSY. NEXT LOOK AT THE

256
00:10:23,052 --> 00:10:24,286
SYSTEMATIC REVIEW AND CLINICAL

257
00:10:24,286 --> 00:10:26,655
PRACTICE GUIDELINES PUBLISHED IN

258
00:10:26,655 --> 00:10:28,891
2021, BY CATHY MORGAN AND

259
00:10:28,891 --> 00:10:30,192
COLLEAGUES. MOST OF YOU ARE

260
00:10:30,192 --> 00:10:33,596
PROBABLY FAMILIAR WITH THIS

261
00:10:33,596 --> 00:10:34,897
ARTICLE, IT IS A LARGE AMOUNT OF

262
00:10:34,897 --> 00:10:39,501
INFORMATION TO CONSUME. ONE

263
00:10:39,501 --> 00:10:40,869
PRIMARY FINDING IS WHEN YOU LOOK

264
00:10:40,869 --> 00:10:43,305
AT CHILDREN WITH MOTOR

265
00:10:43,305 --> 00:10:44,540
IMPAIRMENTS AND GOALS OF

266
00:10:44,540 --> 00:10:45,841
IMPROVING MOTOR FUNCTION THE TWO

267
00:10:45,841 --> 00:10:47,509
PRIMARY INTERVENTIONS FOUND

268
00:10:47,509 --> 00:10:49,979
EFFECTIVE WERE CP SPECIFIC EARLY

269
00:10:49,979 --> 00:10:52,681
INTERVENTION INCLUDING TASK

270
00:10:52,681 --> 00:10:57,553
SPECIFIC MOTOR TRAINING AND THEN

271
00:10:57,553 --> 00:10:59,521
CIMT OR CONSTRAINT INDUCED

272
00:10:59,521 --> 00:11:02,091
MOVEMENT THERAPY. TODAY WE LOOK

273
00:11:02,091 --> 00:11:03,626
AT THOSE TWO AREAS EXTENDING

274
00:11:03,626 --> 00:11:05,294
BEYOND WHAT WAS DONE THIS IN

275
00:11:05,294 --> 00:11:06,795
THIS CLINICAL PRACTICE GUIDELINE

276
00:11:06,795 --> 00:11:09,198
TO THE NEWER EVIDENCE OUT THERE

277
00:11:09,198 --> 00:11:10,899
OR BEING COMPLETED RIGHT NOW. 

278
00:11:10,899 --> 00:11:12,635
THIS IS A GRAPHIC YOU WILL SEE

279
00:11:12,635 --> 00:11:13,802
SEVERAL TIMES THROUGHOUT THE

280
00:11:13,802 --> 00:11:15,638
REST OF MY TALK SO I WILL ORIENT

281
00:11:15,638 --> 00:11:18,474
YOU TO WHAT IT LOOK LIKE THE

282
00:11:18,474 --> 00:11:19,742
GRAY BAR ACROSS THE TOP

283
00:11:19,742 --> 00:11:21,844
REPRESENTS AGE AND MONTHS AND

284
00:11:21,844 --> 00:11:22,811
MIDDLE SECTION REPRESENTING THE

285
00:11:22,811 --> 00:11:24,813
TIME PERIOD CHILDREN ARE

286
00:11:24,813 --> 00:11:26,348
ELIGIBLE FOR EARLY INTERVENTION

287
00:11:26,348 --> 00:11:29,852
MANDATED UNDER IDEA. EACH ROW

288
00:11:29,852 --> 00:11:31,620
UNDERNEATH THAT REPRESENTS A

289
00:11:31,620 --> 00:11:33,756
SPECIFIC STUDY, IT IS A SUB

290
00:11:33,756 --> 00:11:35,024
ANALYSIS OF DIFFERENT GROUPS

291
00:11:35,024 --> 00:11:36,892
WHEN THE STUDY IS COMPLETED

292
00:11:36,892 --> 00:11:38,360
MAYBE REPRESENTING TWO SEPARATE

293
00:11:38,360 --> 00:11:40,229
ROWS. ANYTHING IN BLUE

294
00:11:40,229 --> 00:11:41,330
REPRESENTS AN INTERVENTION THAT

295
00:11:41,330 --> 00:11:43,866
IS STARTED AT THE TIME OR AFTER

296
00:11:43,866 --> 00:11:46,201
EARLY DIAGNOSIS IS POSSIBLE

297
00:11:46,201 --> 00:11:48,470
BETWEEN THREE AND SIX MONTHS OF

298
00:11:48,470 --> 00:11:49,905
AGE WHILE GREEN REPRESENTS

299
00:11:49,905 --> 00:11:50,806
INTERVENTIONS THAT CAN START AT

300
00:11:50,806 --> 00:11:53,309
THE VERY BEGINNING OF THE EARLY

301
00:11:53,309 --> 00:11:56,478
DIAGNOSTIC PROSIS OR START PRIOR

302
00:11:56,478 --> 00:11:58,747
TO IT. ALL STUDIES LABEL WITH

303
00:11:58,747 --> 00:12:00,416
HASH MARKS ON THEM TO REPRESENT

304
00:12:00,416 --> 00:12:03,252
THE LENGTH OF TIME INTERVENTION

305
00:12:03,252 --> 00:12:04,887
IS DONE. INTERVENTION COULD

306
00:12:04,887 --> 00:12:06,855
START ANYWHERE IN THE COLOR BAR,

307
00:12:06,855 --> 00:12:08,424
BUT LENGTH OF TIME REPRESENTED

308
00:12:08,424 --> 00:12:12,795
BY THE HASH MARKS THE STAR

309
00:12:12,795 --> 00:12:14,396
REPRESENTS STUDIES I WILL

310
00:12:14,396 --> 00:12:15,964
SPECIFICALLY TALK ABOUT AND ALL

311
00:12:15,964 --> 00:12:18,100
STUDIES ARE COMPLETED UNLESS

312
00:12:18,100 --> 00:12:20,102
LABELED AS ONGOING STUDY. SO I

313
00:12:20,102 --> 00:12:21,437
WILL START TALKING ABOUT THE THE

314
00:12:21,437 --> 00:12:22,905
REACH TRIAL AND THANK ROSS BOYD

315
00:12:22,905 --> 00:12:24,273
FOR SHARING HER SLIDES.  THIS IS

316
00:12:24,273 --> 00:12:26,542
AMAZING STUDY DESIGNED TO LOOK

317
00:12:26,542 --> 00:12:29,278
AT THE COMPARISON BETWEEN

318
00:12:29,278 --> 00:12:31,447
BIMANUAL THERAPY AND CONSTRAIN

319
00:12:31,447 --> 00:12:32,715
INDUCED THERAPY IN YOUNG

320
00:12:32,715 --> 00:12:33,982
CHILDREN. THEY WERE ENROLLED

321
00:12:33,982 --> 00:12:36,185
BETWEEN THREE AND NINE MONTHS OF

322
00:12:36,185 --> 00:12:38,420
AGE AND HAD A DOSE MATCH

323
00:12:38,420 --> 00:12:41,056
INTERVENTION THAT WAS PROVIDED

324
00:12:41,056 --> 00:12:43,625
UP UNTIL 12 TO 15 MONTHS OF AGE

325
00:12:43,625 --> 00:12:44,693
DEPENDING WHEN THE CHILD WAS

326
00:12:44,693 --> 00:12:45,961
ENROLLED.  THE DOSE OF

327
00:12:45,961 --> 00:12:47,429
INTERVENTION WAS THE SAME SO THE

328
00:12:47,429 --> 00:12:51,433
ACTIVE INGREDIENT COMPARING IS

329
00:12:51,433 --> 00:12:52,434
UNILATERAL VERSUS BIMANUAL

330
00:12:52,434 --> 00:12:53,702
THERAPY. WHILE NO SIGNIFICANT

331
00:12:53,702 --> 00:12:55,537
DIFFERENCES BETWEEN THE TWO

332
00:12:55,537 --> 00:12:58,307
GROUPS WHICH IS WILL BE IN

333
00:12:58,307 --> 00:13:00,042
PUBLICATION SOON, ADDITIONAL

334
00:13:00,042 --> 00:13:01,810
FINDING WAS VERY IMPORTANT. THIS

335
00:13:01,810 --> 00:13:04,513
IS THE IDEA THAT EARLY IS

336
00:13:04,513 --> 00:13:06,148
IMPORTANT. SO WHEN THEY LOOK AT

337
00:13:06,148 --> 00:13:07,983
THE DATA ON CHILDREN WHO STARTED

338
00:13:07,983 --> 00:13:08,984
THE INTERVENTIONS BETWEEN THREE

339
00:13:08,984 --> 00:13:11,653
AND SIX MONTHS OF AGE SO VERY

340
00:13:11,653 --> 00:13:14,189
EARLY WINDOW FOR EARLY DETECTION

341
00:13:14,189 --> 00:13:15,991
COMPARED TO THOSE CHILDREN WHO

342
00:13:15,991 --> 00:13:18,794
STARTED AFTER SIX MONTHS OF AGE

343
00:13:18,794 --> 00:13:21,196
THEY IDENTIFY THERE WAS A

344
00:13:21,196 --> 00:13:22,331
DIFFERENCE BETWEEN GROUPS AT THE

345
00:13:22,331 --> 00:13:24,767
POST INTERVENTION TIME POINT. SO

346
00:13:24,767 --> 00:13:26,802
IN BOTH METRICS THEY COMPAREDD

347
00:13:26,802 --> 00:13:28,771
ON HAND ASSESSMENT OF INFANTS,

348
00:13:28,771 --> 00:13:31,140
INFANTS WHO STARTED EARLY HAD A

349
00:13:31,140 --> 00:13:32,374
BETTER OUTCOME THAN THOSE WHO

350
00:13:32,374 --> 00:13:35,043
STARTED AT SIX TO NINE MONTHS.

351
00:13:35,043 --> 00:13:36,945
THIS IS NOT CONSIDERED LATE TO

352
00:13:36,945 --> 00:13:38,814
START INTERVENTION AT SIX TO

353
00:13:38,814 --> 00:13:40,382
NINE MONTHS BUT IF NEW

354
00:13:40,382 --> 00:13:41,450
INTERVENTION WOULD BE MORE

355
00:13:41,450 --> 00:13:42,818
EFFECTIVE BETWEEN THREE AND SIX

356
00:13:42,818 --> 00:13:44,119
MONTHS OF AGE THEY MAY BE MORE

357
00:13:44,119 --> 00:13:46,188
LIKELY TO START THAT

358
00:13:46,188 --> 00:13:48,457
INTERVENTION. LET'S SWITCH GEARS

359
00:13:48,457 --> 00:13:52,361
TO TALK TASK SPECIFIC TRAINING.

360
00:13:52,361 --> 00:13:53,395
SPECIFICALLY LOOK AT SPECIFIC

361
00:13:53,395 --> 00:13:55,397
TRAINING AFTER DIAGNOSIS CAN

362
00:13:55,397 --> 00:13:56,765
HAPPEN. BETWEEN THREE AND SIX

363
00:13:56,765 --> 00:13:59,635
MONTHS FOR THE MOST PAR PART. SE

364
00:13:59,635 --> 00:14:00,636
WILL TALK SPECIFICALLY ABOUT

365
00:14:00,636 --> 00:14:01,937
THESE INTERVENTIONS ALL WHICH

366
00:14:01,937 --> 00:14:04,039
ARE AS YOU CAN SEE ONGOING WITH

367
00:14:04,039 --> 00:14:06,942
THE EXCEPTION OF ONE, THE START

368
00:14:06,942 --> 00:14:08,010
PLAY TRIAL. THIS IS VERY

369
00:14:08,010 --> 00:14:09,645
DIFFERENT FROM WHAT WE SAW IN

370
00:14:09,645 --> 00:14:12,014
THE BIMANUAL CIM LITERATURE AND

371
00:14:12,014 --> 00:14:15,851
LARGE PIECE OF THAT IS BIMANUAL

372
00:14:15,851 --> 00:14:18,053
INTERVENTION AND CIMT HAVE BEEN

373
00:14:18,053 --> 00:14:19,454
AROUND LONG IRAND RESEARCHED

374
00:14:19,454 --> 00:14:20,956
WITH EXTENSIVE FUNDING FOR

375
00:14:20,956 --> 00:14:22,457
LOOKING AT THE IMPLEMENTATION IN

376
00:14:22,457 --> 00:14:24,459
BOTH ADULT AND PEDIATRIC

377
00:14:24,459 --> 00:14:26,061
POPULATION. THE INTERVENTIONS

378
00:14:26,061 --> 00:14:28,363
REPRESENTED HERE ARE ALSO FAIRLY

379
00:14:28,363 --> 00:14:29,465
NEW, THEY HAVE SOME COMMON

380
00:14:29,465 --> 00:14:33,068
PRINCIPLES ACROSS THEM, BUT THEY

381
00:14:33,068 --> 00:14:34,536
EXCHANGE HAPPENS INDEPENDENTLY

382
00:14:34,536 --> 00:14:36,405
AND IN DIFFERENT TRIALS. THEY

383
00:14:36,405 --> 00:14:37,973
ALSO WERE FUNDED MUCH MORE

384
00:14:37,973 --> 00:14:39,107
RECENTLY WHICH IS -- MEANS THEY

385
00:14:39,107 --> 00:14:42,311
ARE STILL ONGOING IN MANY CASES 

386
00:14:42,311 --> 00:14:43,879
THE START PLAY TRIAL SITTING

387
00:14:43,879 --> 00:14:45,380
TOGETHER AND REACHING TO PLAY,

388
00:14:45,380 --> 00:14:46,682
WAS COMPLETED TO LOOK AT THE

389
00:14:46,682 --> 00:14:48,417
EFFICACY OF THIS INTERVENTION

390
00:14:48,417 --> 00:14:50,018
SPECIFICALLY IN CHILDREN WITH

391
00:14:50,018 --> 00:14:52,621
NEUROMOTOR DISORDERS. THAT MEANS

392
00:14:52,621 --> 00:14:54,389
CHILDREN DIDN'T HAVE TO HAVE A

393
00:14:54,389 --> 00:14:55,791
DIAGNOSIS OF CEREBRAL PALSY, BUT

394
00:14:55,791 --> 00:14:58,760
THEY COULD HAVE HAD A DIAGNOSIS

395
00:14:58,760 --> 00:15:00,729
OF CEREBRAL PALSY. THIS CLINICAL

396
00:15:00,729 --> 00:15:02,264
TRIAL WAS FUNDED BY THE

397
00:15:02,264 --> 00:15:03,732
DEPARTMENT OF EDUCATION THROUGH

398
00:15:03,732 --> 00:15:09,671
IES AND LED BAREGE YES AND WAS

399
00:15:09,671 --> 00:15:10,472
PROD TO BE PART OF THE SITE AT

400
00:15:10,472 --> 00:15:11,206
VIRGINIA COMMONWEALTH

401
00:15:11,206 --> 00:15:12,474
UNIVERSITY. THE MAIN PIECE I

402
00:15:12,474 --> 00:15:13,842
WANT YOU TO TAKE HOME FROM THIS

403
00:15:13,842 --> 00:15:15,244
DISCUSSION IS THAT THE

404
00:15:15,244 --> 00:15:16,845
INTERVENTION FROM START PLAY IS

405
00:15:16,845 --> 00:15:19,014
DIFFERENT. IT BUILDS AND

406
00:15:19,014 --> 00:15:20,816
SCAFFOLDS MOTOR COGNITIVE SKILLS

407
00:15:20,816 --> 00:15:21,884
TOGETHER.  THIS IS QUITE

408
00:15:21,884 --> 00:15:22,851
DIFFERENT THAN TRADITIONAL

409
00:15:22,851 --> 00:15:24,753
PHYSICAL THERAPY WHICH IS

410
00:15:24,753 --> 00:15:26,054
PRIMARILY FOCUSED ON MOTOR

411
00:15:26,054 --> 00:15:27,756
FUNCTION AND IMPROVING MOTOR

412
00:15:27,756 --> 00:15:30,025
ACTIONS.  PARENTS WERE ALWAYS

413
00:15:30,025 --> 00:15:32,394
ENGAGED IN THE INTERVENTION AND

414
00:15:32,394 --> 00:15:33,662
ENCOURAGED TO LEARN HOW TO SET

415
00:15:33,662 --> 00:15:35,097
THE ENVIRONMENT UP, IN ORDER TO

416
00:15:35,097 --> 00:15:36,431
HELP THE CHILD CONTINUE TO

417
00:15:36,431 --> 00:15:38,734
PRACTICE THIS MOTOR BASE PROBLEM

418
00:15:38,734 --> 00:15:40,235
SOLVING THROUGHOUT THEIR DAY TO

419
00:15:40,235 --> 00:15:43,505
DAY ACTIVITIES. THE OUTCOMES FOR

420
00:15:43,505 --> 00:15:46,375
THIS STUDY WERE DIVIDED TO

421
00:15:46,375 --> 00:15:47,643
COMPARISONS BY GROUP FOR THOSE

422
00:15:47,643 --> 00:15:49,311
WITH MILD MOTOR IMPAIRMENT AND

423
00:15:49,311 --> 00:15:51,446
WILL IS A SIGNIFICANT MOTOR

424
00:15:51,446 --> 00:15:52,881
IMPAIRMENT BECAUSE MAJORITY OF

425
00:15:52,881 --> 00:15:54,049
CHILDREN WITH CEREBRAL PALSY

426
00:15:54,049 --> 00:15:55,684
WERE IN SIGNIFICANT MOTOR

427
00:15:55,684 --> 00:15:56,451
IMPAIRMENT GROUP AND

428
00:15:56,451 --> 00:15:57,986
REPRESENTATIVE OF THAT

429
00:15:57,986 --> 00:15:59,054
POPULATION I'M ONLY PRESENTING

430
00:15:59,054 --> 00:16:00,756
THOSE RESULTS TODAY.  THIS

431
00:16:00,756 --> 00:16:02,991
INTERVENTION WAS EFFECTIVE AND

432
00:16:02,991 --> 00:16:04,393
IMPROVING LONG TERM OUTCOMES IN

433
00:16:04,393 --> 00:16:06,795
SOME AREAS AS WELL AS SHORT TERM

434
00:16:06,795 --> 00:16:08,030
OUTCOMES. THE GREEN REPRESENTS

435
00:16:08,030 --> 00:16:11,667
THE AREAS STATISTICALLYSIS CAN'T

436
00:16:11,667 --> 00:16:13,769
AND THE YELLOW REPRESENTS THOSE

437
00:16:13,769 --> 00:16:15,437
THAT HAD LARGE EFFECT SIZE BUT

438
00:16:15,437 --> 00:16:16,738
NOT STATISTICALLYSIS CAN'T. AS

439
00:16:16,738 --> 00:16:18,573
YOU CAN SEE THE INTERVENTION

440
00:16:18,573 --> 00:16:21,043
THAT TARGETED MOTOR SKILLS

441
00:16:21,043 --> 00:16:22,945
SITTING REACHING AND THEN

442
00:16:22,945 --> 00:16:24,613
PROBLEM SOLVING ACHIEVE THIS

443
00:16:24,613 --> 00:16:26,782
GOAL OF IMPROVING REACHING

444
00:16:26,782 --> 00:16:30,118
SITTING AND SHORT TERM PROBLEM

445
00:16:30,118 --> 00:16:31,286
SOLVING LIKE TO IMPROVEMENTS IN

446
00:16:31,286 --> 00:16:33,088
SHORT TERM COGNITION, SOME

447
00:16:33,088 --> 00:16:34,856
IMPROVEMENTS IN MOTOR SKILLS AS

448
00:16:34,856 --> 00:16:37,459
WELL AS IN FINE MOTOR SKILLS. 

449
00:16:37,459 --> 00:16:39,461
THESE ARE SUBSTANTIAL

450
00:16:39,461 --> 00:16:41,229
IMPROVEMENTS AFTER 24 VISITS

451
00:16:41,229 --> 00:16:44,099
PROVIDED OVER 12 WEEKS OR TWICE

452
00:16:44,099 --> 00:16:45,867
WEEKLY THERAPY FOR 123 WEEKS. 

453
00:16:45,867 --> 00:16:49,137
THIS LED TO THE SECOND TRIAL OF

454
00:16:49,137 --> 00:16:51,506
THE PT WE CALL SIT PT. THIS IS

455
00:16:51,506 --> 00:16:53,675
AN INTERVENTION TRIAL THAT IS

456
00:16:53,675 --> 00:16:55,410
DESIGNED TO SPECIFICALLY COMPARE

457
00:16:55,410 --> 00:16:56,878
TWO DOSE MATCH INTERVENTIONS.

458
00:16:56,878 --> 00:16:58,413
BECAUSE THE PREVIOUS TRIAL WAS

459
00:16:58,413 --> 00:17:00,582
NOT DOSE MATCHED.  HOWEVER IN

460
00:17:00,582 --> 00:17:02,684
THE PREVIOUS TRIAL WE WERE ABLE

461
00:17:02,684 --> 00:17:05,587
TO VIDEOTAPE THERAPY SESSIONS IN

462
00:17:05,587 --> 00:17:06,788
THE USUAL CARE GROUP WHICH ALLOW

463
00:17:06,788 --> 00:17:08,890
US TO FIGURE OUT WHAT IS USUAL

464
00:17:08,890 --> 00:17:12,361
CARE ACROSS THE COUNTRY, AND

465
00:17:12,361 --> 00:17:14,129
FIVE ASSESSMENT SITES, AS A

466
00:17:14,129 --> 00:17:16,031
RESULT MORE PT INTERVENTION IS

467
00:17:16,031 --> 00:17:17,866
VERY SPECIFICALLY DESIGNED TO

468
00:17:17,866 --> 00:17:20,702
REPRESENT INTERVENTION CURRENTLY

469
00:17:20,702 --> 00:17:23,438
BEING DONE IN EARLY INTERVENTION

470
00:17:23,438 --> 00:17:25,374
AND THAT ALLOWS A SOLID

471
00:17:25,374 --> 00:17:28,110
COMPARISON. THE MORE PT START

472
00:17:28,110 --> 00:17:30,645
PLAY GROUP GET 24 VISITS OVER 12

473
00:17:30,645 --> 00:17:31,813
WEEKS OR TWICE WEEKLY

474
00:17:31,813 --> 00:17:32,814
INTERVENTION AND CONTINUING

475
00:17:32,814 --> 00:17:34,983
THEIR USUAL CARE. WE ARE

476
00:17:34,983 --> 00:17:38,453
CURRENTLY ENROLLING THIS STUDY

477
00:17:38,453 --> 00:17:40,322
LOS ANGELES SEATTLE AND OMAHA

478
00:17:40,322 --> 00:17:42,557
AND HOPE TO CLOSE ENROLLMENT IN

479
00:17:42,557 --> 00:17:44,493
TWO YEARS. THE I MOVE TRIAL IS

480
00:17:44,493 --> 00:17:46,028
SPECIFICALLY DESIGNED TO LOOK AT

481
00:17:46,028 --> 00:17:47,929
MOTOR ABILITY AND MOBILITY

482
00:17:47,929 --> 00:17:51,099
TRAINING BUT WITH AN ADVERSE --

483
00:17:51,099 --> 00:17:52,768
EMPHASIS ON VARIABILITY AND

484
00:17:52,768 --> 00:17:54,102
ERROR. THE I MOVE GROUP SPENDS

485
00:17:54,102 --> 00:17:58,040
TIME IN ZERO G DESIGNED FOR

486
00:17:58,040 --> 00:17:58,707
YOUNG INSTANCE TO PROVIDE BODY

487
00:17:58,707 --> 00:18:00,442
WEIGHT SUPPORT BUT ALLOW

488
00:18:00,442 --> 00:18:05,247
CHILDREN TO MOVE FLUIDLY BETWEEN

489
00:18:05,247 --> 00:18:06,782
POSITIONS. THEY COME IN TO

490
00:18:06,782 --> 00:18:08,850
CLINIC TWICE A WEEK FOR 24 WEEKS

491
00:18:08,850 --> 00:18:10,252
AND COMPARISON GROUP ARE

492
00:18:10,252 --> 00:18:11,787
CHILDREN OF CHILDREN GETTING

493
00:18:11,787 --> 00:18:12,988
CONVENTIONAL INTERVENTION IN THE

494
00:18:12,988 --> 00:18:15,557
SAME LOCATION. WHILE THIS TRIAL

495
00:18:15,557 --> 00:18:16,892
CLOSED DATA COLLECTION AND

496
00:18:16,892 --> 00:18:18,794
PRIMARY OUTCOME SHOULD BE

497
00:18:18,794 --> 00:18:21,396
PUBLISHED BY JUNE, ONE OF THE

498
00:18:21,396 --> 00:18:22,531
PRIMARY FINDINGS INTERESTING IS

499
00:18:22,531 --> 00:18:23,999
TO LOOK AT THE DEVELOPMENT OF

500
00:18:23,999 --> 00:18:25,567
VARIABILITY IN CHILDREN WHO HAVE

501
00:18:25,567 --> 00:18:30,372
CEREBRAL PALSY. MEAN AGE OF

502
00:18:30,372 --> 00:18:31,573
ENROLLMENT WAS 24 MONTHS WITH

503
00:18:31,573 --> 00:18:33,075
RANGE OF ONE TO THREE YEARS OF

504
00:18:33,075 --> 00:18:35,644
AGE, THIS IS A THE OLDER WINDOW

505
00:18:35,644 --> 00:18:37,412
OF CHILDREN WHO ARE IN THE EARLY

506
00:18:37,412 --> 00:18:39,614
INTERVENTION SYSTEM. THE DRIVE

507
00:18:39,614 --> 00:18:41,283
STUDY RUN BY -- AT THE OHIO

508
00:18:41,283 --> 00:18:43,218
STATE UNIVERSITY IS ONE OF THE

509
00:18:43,218 --> 00:18:45,454
FEW CLINICAL TRIALS SPECIFICALLY

510
00:18:45,454 --> 00:18:46,788
DESIGNED TO SUPPORT AND EVALUATE

511
00:18:46,788 --> 00:18:49,458
THE EFFICACY OF INTERVENTION IN

512
00:18:49,458 --> 00:18:51,059
IN CHILDREN WITH LEVELS OF THREE

513
00:18:51,059 --> 00:18:53,428
TO FIVE TO SO MORE SIGNIFICANTLY

514
00:18:53,428 --> 00:18:54,796
INVOLVED. THIS TRIAL IS

515
00:18:54,796 --> 00:18:56,031
SPECIFICALLY DESIGNED TO COMPARE

516
00:18:56,031 --> 00:18:57,966
DIFFERENT WAYS OF DELIVERING

517
00:18:57,966 --> 00:19:00,302
INTERVENTION BUT WITH THE SAME

518
00:19:00,302 --> 00:19:01,970
DOSE OF 40 HOURS. THIS SHOULD

519
00:19:01,970 --> 00:19:04,639
HELP CLINICIANS IDENTIFY DOESN'T

520
00:19:04,639 --> 00:19:06,575
MATTER WHICH PATTERN OF

521
00:19:06,575 --> 00:19:08,810
INTERVENTION WHERE WE SCHEDULING

522
00:19:08,810 --> 00:19:10,579
SYSTEM YOU UTILIZE. WHICH HELP

523
00:19:10,579 --> 00:19:12,681
PARENTS UNDERSTAND THE OPTIONS

524
00:19:12,681 --> 00:19:14,416
THAT THEY HAVE AND WHAT MIGHT BE

525
00:19:14,416 --> 00:19:16,518
BEST FOR THEIR INDIVIDUAL TRIAL.

526
00:19:16,518 --> 00:19:20,622
THE TRIAL RUN BY CATHY MORGAN IS

527
00:19:20,622 --> 00:19:22,791
CONTINUING TO COLLECT DATA IN

528
00:19:22,791 --> 00:19:23,925
AUSTRALIA. THIS TRIAL IS

529
00:19:23,925 --> 00:19:25,227
SPECIFICALLY DESIGNED AND

530
00:19:25,227 --> 00:19:26,795
ENROLLED CHILDREN FROM THREE TO

531
00:19:26,795 --> 00:19:28,530
NINE MONTHS OF AGE AND

532
00:19:28,530 --> 00:19:29,865
PRINCIPLES OF THE INTERVENTION

533
00:19:29,865 --> 00:19:33,135
LOOK AT MOTOR BASED ACTIVITY AND

534
00:19:33,135 --> 00:19:35,070
MOTOR TRAINING BUT ALSO HELPING

535
00:19:35,070 --> 00:19:36,838
TO ENRICH ENVIRONMENT FOR

536
00:19:36,838 --> 00:19:39,207
INFANTS AT HIGH RISK FOR CP. THE

537
00:19:39,207 --> 00:19:40,442
PRIMARY FOCUS IS AROUND THE IDEA

538
00:19:40,442 --> 00:19:43,178
OF MOTOR FUNCTION AND IMPROVING

539
00:19:43,178 --> 00:19:44,913
MOTOR BASE SKILLS IN CHILDREN

540
00:19:44,913 --> 00:19:46,481
HOWEVER THEY ARE MEASURING

541
00:19:46,481 --> 00:19:48,450
COGNITIVE AND MOTOR OUTCOMES SO

542
00:19:48,450 --> 00:19:49,918
THIS WILL BE GREAT INFORMATION

543
00:19:49,918 --> 00:19:51,386
TO HAVE WHEN DATA COLLECTION

544
00:19:51,386 --> 00:19:53,421
CLOSES AND ANALYSIS COMMENCES IN

545
00:19:53,421 --> 00:19:55,924
2023. SO COMING BACK TO OUR

546
00:19:55,924 --> 00:19:58,160
GRAPHIC ABOUT TASKS SPECIFIC

547
00:19:58,160 --> 00:19:59,394
TRAINING AFTER INTERVENTION, YOU

548
00:19:59,394 --> 00:20:01,563
CAN SEE THAT THERE IS THIS GAP

549
00:20:01,563 --> 00:20:03,131
WE DON'T HAVE A LOT OF

550
00:20:03,131 --> 00:20:04,266
INTERVENTIONS THAT START RIGHT

551
00:20:04,266 --> 00:20:06,067
AT THE TIME OF DIAGNOSIS

552
00:20:06,067 --> 00:20:07,736
PARTICULARLY IF THE CHILD IS

553
00:20:07,736 --> 00:20:08,537
DIAGNOSED AT THREE MONTHS OF

554
00:20:08,537 --> 00:20:11,273
AGE. IN ADDITION WE DON'T HAVE

555
00:20:11,273 --> 00:20:13,208
INTERVENTIONS REPRESENTED HERE

556
00:20:13,208 --> 00:20:14,643
THAT START PRIOR TO ONSET OF

557
00:20:14,643 --> 00:20:17,646
DIAGNOSIS.  MANY LOOK AT THIS

558
00:20:17,646 --> 00:20:19,214
AND SAY OKAY, THAT IS ALL RIGHT,

559
00:20:19,214 --> 00:20:21,283
LET'S DO THE EARLY DETECTION,

560
00:20:21,283 --> 00:20:22,551
IDENTIFY KIDS AT THE HIGHEST

561
00:20:22,551 --> 00:20:25,620
RISK AND THEN START THEM EARLY

562
00:20:25,620 --> 00:20:26,321
INTERVENTION SERVICES AT THAT

563
00:20:26,321 --> 00:20:27,989
POINT. HOWEVER, WHEN WE LOOK AT

564
00:20:27,989 --> 00:20:29,891
THE ACCESS TO EARLY INTERVENTION

565
00:20:29,891 --> 00:20:31,993
SERVICES ACROSS THE COUNTRY ONLY

566
00:20:31,993 --> 00:20:32,894
ABOUT FIVE PERCENT OF CHILDREN

567
00:20:32,894 --> 00:20:34,896
WHO ARE ELIGIBLE FOR EARLY

568
00:20:34,896 --> 00:20:36,264
INTERVENTION SERVICES ARE ABLE

569
00:20:36,264 --> 00:20:38,166
TO SUCCESSFULLY NAVIGATE THE

570
00:20:38,166 --> 00:20:39,267
SYSTEM AND GET INTO EARLY

571
00:20:39,267 --> 00:20:44,806
INTERVENTION. THAT MEANS OUT OF

572
00:20:44,806 --> 00:20:47,909
14,000 CHILDREN CONFERRED OR

573
00:20:47,909 --> 00:20:50,045
CONSIDERED ELIGIBLE FOR EARLY

574
00:20:50,045 --> 00:20:52,447
INTERVENTION BASED ON CONDITION

575
00:20:52,447 --> 00:20:53,782
OR DEVELOPMENTAL DELAY ONLY

576
00:20:53,782 --> 00:20:56,952
3,000 WERE REFERRED AND THEN

577
00:20:56,952 --> 00:20:59,154
WITHIN THAT GROUP ONLY 500

578
00:20:59,154 --> 00:21:01,690
ACTUALLY COMPLETED THEIR

579
00:21:01,690 --> 00:21:03,658
FUNCTIONAL OUTCOME DATA

580
00:21:03,658 --> 00:21:04,726
COMPLETED INTERVENTION AND

581
00:21:04,726 --> 00:21:06,161
STARTED THE EARLY INTERVENTION

582
00:21:06,161 --> 00:21:08,863
PROCESS. THAT MEANS WE HAD OVER

583
00:21:08,863 --> 00:21:10,532
14,000 CHILDREN WHO DIDN'T GET

584
00:21:10,532 --> 00:21:12,200
THE SERVICES THEY NEEDED. THERE

585
00:21:12,200 --> 00:21:15,070
ARE MANY BARRIERS TO ENTRY TO

586
00:21:15,070 --> 00:21:16,872
EARLY INTERVENTION, AS YOU CAN

587
00:21:16,872 --> 00:21:18,373
SEE ALREADY LOOKING AT THESE

588
00:21:18,373 --> 00:21:19,875
TIERS ALONG WITH THIS GRAPHIC

589
00:21:19,875 --> 00:21:21,910
THERE'S MULTIPLE STEPS BEING

590
00:21:21,910 --> 00:21:22,811
EVALUATED, PLANNING YOUR

591
00:21:22,811 --> 00:21:24,813
SERVICES AND THEN ACTUALLY

592
00:21:24,813 --> 00:21:27,282
STARTING SERVICES.  IN ADDITION

593
00:21:27,282 --> 00:21:29,651
WE KNOW THERE'S SUBSTANTIAL

594
00:21:29,651 --> 00:21:30,752
RACIAL ETHNIC DIVERSITY,

595
00:21:30,752 --> 00:21:31,653
CHALLENGES AROUND ACCESS TO

596
00:21:31,653 --> 00:21:34,522
SERVICES. PEOPLE WHO COME FROM

597
00:21:34,522 --> 00:21:37,125
UNDER-REPRESENTED GROUPS, OR

598
00:21:37,125 --> 00:21:37,959
MINORITIZED GROUPS DON'T GET

599
00:21:37,959 --> 00:21:39,427
REFERRED TO EARLY INTERVENTION

600
00:21:39,427 --> 00:21:42,230
SERVICES AT THE SAME RATE. AND

601
00:21:42,230 --> 00:21:44,065
THEY HAVE DIFFICULTY ACCESSING

602
00:21:44,065 --> 00:21:45,634
THOSE SERVICES EVEN IF THEY

603
00:21:45,634 --> 00:21:47,269
SERVE. WE DON'T SPECIFICALLY

604
00:21:47,269 --> 00:21:48,803
IDENTIFY CHILDREN BORN PRE-TERM

605
00:21:48,803 --> 00:21:50,338
HAVING CEREBRAL PALSY. WE DO

606
00:21:50,338 --> 00:21:52,474
KNOW THERE'S CERTAIN GROUPS

607
00:21:52,474 --> 00:21:54,643
HIGHER RISK. WHEN WE LOOK AT THE

608
00:21:54,643 --> 00:21:56,444
GROUP OF CHILDREN BORN BETWEEN

609
00:21:56,444 --> 00:21:58,713
22 AND 26 WEEKS GESTATION, THE

610
00:21:58,713 --> 00:22:01,816
RECENT PUBLICATION SUGGESTED

611
00:22:01,816 --> 00:22:03,918
THAT 78% WILL SURVIVE. HOWEVER

612
00:22:03,918 --> 00:22:07,088
IF YOU LOOK AT THE SUPPLEMENTAL

613
00:22:07,088 --> 00:22:09,658
DATA, 18% CHILDREN HAD CEREBRAL

614
00:22:09,658 --> 00:22:11,660
PALSY. INTERESTINGLY WHEN YOU

615
00:22:11,660 --> 00:22:12,961
LOOK AT THE GRAPHICS ON THE RATE

616
00:22:12,961 --> 00:22:14,763
OF SEVERE NEURODEVELOPMENTAL

617
00:22:14,763 --> 00:22:17,499
IMPAIRMENT, MODERATE AND MILD,

618
00:22:17,499 --> 00:22:19,868
IT IS SOMEWHAT DECEIVING AND

619
00:22:19,868 --> 00:22:22,170
CONFUSING BECAUSE CHILDREN WITH

620
00:22:22,170 --> 00:22:25,607
GNS CS LEVEL 1 MEANING HAVE

621
00:22:25,607 --> 00:22:27,409
CEREBRAL PALSY BUT AMBULATORY

622
00:22:27,409 --> 00:22:29,978
WITHOUT ASSISTIVE DEVICE, THOSE

623
00:22:29,978 --> 00:22:31,947
CHILDREN ARE IN THE MILD TO NO

624
00:22:31,947 --> 00:22:33,048
IMPAIRMENT CATEGORY. BUT I WOULD

625
00:22:33,048 --> 00:22:34,883
HAZARD TO SAY IF YOU ASK THE

626
00:22:34,883 --> 00:22:37,052
PARENT OF A CHILD WITH CS LEVEL

627
00:22:37,052 --> 00:22:39,087
OF 1 IF THEY WERE ANY

628
00:22:39,087 --> 00:22:40,789
DISABILITYSTHEY LIKELY SAY YES.

629
00:22:40,789 --> 00:22:42,023
SO THIS NEEDS TO BE CONSIDERED

630
00:22:42,023 --> 00:22:44,326
IN THE INTERPRETATION OF ALL

631
00:22:44,326 --> 00:22:45,994
DATA TO WHAT PEOPLE ARE RATING

632
00:22:45,994 --> 00:22:49,164
IN TERMS OF SEVERITY OF

633
00:22:49,164 --> 00:22:50,565
IMPAIRMENT. I WOULD SUGGEST IF

634
00:22:50,565 --> 00:22:51,599
WE LOOK AT THE RATE OF

635
00:22:51,599 --> 00:22:53,601
IMPAIRMENT IN THESE YOUNG

636
00:22:53,601 --> 00:22:55,203
CHILDREN WE WOULDN'T BE HARMING

637
00:22:55,203 --> 00:22:57,138
THESE CHILDREN TO START

638
00:22:57,138 --> 00:22:58,773
INTERVENTION EARLY, PRIOR TO

639
00:22:58,773 --> 00:22:59,874
DIAGNOSIS OF CEREBRAL PALSY.

640
00:22:59,874 --> 00:23:01,443
BASED ON THEIR EARLY RISK

641
00:23:01,443 --> 00:23:04,346
FACTORS AND THE HIGH LIKELIHOOD

642
00:23:04,346 --> 00:23:07,082
THEY MAY HAVE CEREBRAL PALSY. IN

643
00:23:07,082 --> 00:23:09,584
ADDITION IF WE LOOK AT THAT

644
00:23:09,584 --> 00:23:10,985
PRE-TERM POPULATION AGAIN AND

645
00:23:10,985 --> 00:23:12,487
ONLY LOOK AT THOSE KIDS WITHOUT

646
00:23:12,487 --> 00:23:14,823
CEREBRAL PALSY, UP TO 50% OF

647
00:23:14,823 --> 00:23:18,126
THEM WILL HAVE SOME MOTOR

648
00:23:18,126 --> 00:23:19,461
IMPAIRMENT ON (INAUDIBLE). THIS

649
00:23:19,461 --> 00:23:20,895
IS SUBSTANTIAL DEFICIT THAT

650
00:23:20,895 --> 00:23:22,731
CHILDREN ARE DEMONSTRATING AS

651
00:23:22,731 --> 00:23:24,165
SCHOOL AGE WHICH MAY IMPACT

652
00:23:24,165 --> 00:23:27,402
THEIRANT TO KEEP UP WITH PEERS,

653
00:23:27,402 --> 00:23:30,071
IMPACT THEIR SELF-ESTEEM AS WELL

654
00:23:30,071 --> 00:23:32,841
AS MR.INGNESS TO PARTICIPATE. SO

655
00:23:32,841 --> 00:23:34,743
LET'S GO BACK TO THIS IDEA OF

656
00:23:34,743 --> 00:23:36,845
TASK SPECIFIC TRAINING. FROM THE

657
00:23:36,845 --> 00:23:38,213
BEFORE DIAGNOSIS WE CAN LOOK AT

658
00:23:38,213 --> 00:23:39,848
TASK SPECIFIC TRAINING AND THINK

659
00:23:39,848 --> 00:23:41,483
ABOUT INTERVENTIONS THAT MAYBE

660
00:23:41,483 --> 00:23:45,019
APPROPRIATE TO START EITHER VERY

661
00:23:45,019 --> 00:23:49,758
EARLY PHASE OF OR BEFORE THAT. I

662
00:23:49,758 --> 00:23:51,292
WILL HIGHLIGHT THE SPEEDY TRIAL

663
00:23:51,292 --> 00:23:51,893
OR INTERVENTION TRIAL

664
00:23:51,893 --> 00:23:53,962
SPECIFICALLY LOOKING AT DOES

665
00:23:53,962 --> 00:23:56,798
TINY MATTER WHEN WE START

666
00:23:56,798 --> 00:23:57,866
INTERVENTION WITH ADVANCE. THIS

667
00:23:57,866 --> 00:24:00,034
IS A CHILD BEING LED BY MYSELF

668
00:24:00,034 --> 00:24:01,302
AND THE COLLABORATION WITH THE

669
00:24:01,302 --> 00:24:02,904
UNIVERSITY OF VIRGINIA, AND

670
00:24:02,904 --> 00:24:03,671
VIRGINIA COMMONWEALTH

671
00:24:03,671 --> 00:24:08,943
UNIVERSITY. THIS INTERVENTION IS

672
00:24:08,943 --> 00:24:09,577
SPECIFICALLY DESIGNED TO SCALL

673
00:24:09,577 --> 00:24:11,346
FOLD PARENTS ABILITY TO SUPPORT

674
00:24:11,346 --> 00:24:13,314
INFANTS. FROM THE NICU TO THREE

675
00:24:13,314 --> 00:24:14,783
MONTHS OF AGE, WE SPENT THE

676
00:24:14,783 --> 00:24:19,621
MAJORITY OF THE TIME HELPING

677
00:24:19,621 --> 00:24:21,356
PARENTS DECIDE HOW AND WHEN TO

678
00:24:21,356 --> 00:24:22,657
INTERACT WITH THEIR BABY IN A

679
00:24:22,657 --> 00:24:24,092
WAY TO SUPPORT DEVELOPMENT. THE

680
00:24:24,092 --> 00:24:26,795
GOAL IS NOT TO PROVIDE THERAPY

681
00:24:26,795 --> 00:24:28,596
SERVICES WHERE THERAPIST IS

682
00:24:28,596 --> 00:24:30,832
DOING THE WORK BUT RATHER

683
00:24:30,832 --> 00:24:33,601
SCAFFOLD PARENTS ABILITIES AND

684
00:24:33,601 --> 00:24:34,803
PREPARE THEM TO SUPPORT THEIR

685
00:24:34,803 --> 00:24:38,006
INFANT OVER THEIR LIFETIME.

686
00:24:38,006 --> 00:24:39,174
INTERVENTION CAN BE PROVIDED IN

687
00:24:39,174 --> 00:24:40,074
PERSON, THROUGH TELEMEDICINE

688
00:24:40,074 --> 00:24:42,977
USING A COMBINATION OF VIDEOS,

689
00:24:42,977 --> 00:24:44,145
AND INFORMATION THAT IS PROVIDED

690
00:24:44,145 --> 00:24:46,614
ON A WEB-BASED PLATFORM OR IN A

691
00:24:46,614 --> 00:24:49,150
WRITTEN FORMAT. YOU WILL SEE

692
00:24:49,150 --> 00:24:50,385
HERE THAT TWO BOXES REPRESENT

693
00:24:50,385 --> 00:24:52,120
THE TIME PERIODS WHICH

694
00:24:52,120 --> 00:24:53,822
INTERVENTION IS DELIVERED WITH

695
00:24:53,822 --> 00:24:56,357
THE SPEEDY EARLY PERIOD ENDING

696
00:24:56,357 --> 00:24:59,127
ABOUT FOUR MONTHS OF AGE AND THE

697
00:24:59,127 --> 00:25:00,895
SPEEDY LATE GROUP STARTING THE

698
00:25:00,895 --> 00:25:03,331
SAME TIME POINT WHICH IS FAIRLY

699
00:25:03,331 --> 00:25:04,332
CONSISTENT WHEN INTERVENTION

700
00:25:04,332 --> 00:25:08,470
STARTS IN MOST PLACES. THIS

701
00:25:08,470 --> 00:25:09,304
ENTERRECOLLECTION IS ALSO

702
00:25:09,304 --> 00:25:09,838
BLENDED WITH MENTAL HEALTH

703
00:25:09,838 --> 00:25:11,105
OUTCOMES INTERVENTION THAT

704
00:25:11,105 --> 00:25:13,007
SPECIFICALLY IS DESIGNED IN IN

705
00:25:13,007 --> 00:25:13,908
AUSTRALIA WITH COLLABORATION

706
00:25:13,908 --> 00:25:16,110
WITH LISA TO LOOK AT THE

707
00:25:16,110 --> 00:25:17,712
OUTCOMES FOR BOTH PARENTS AND

708
00:25:17,712 --> 00:25:19,314
CHILDREN WHO PARTICIPATE IN THIS

709
00:25:19,314 --> 00:25:21,015
TYPE OF -- SO PREVENTION IS A

710
00:25:21,015 --> 00:25:23,351
KEY TO MEDICAL CARE IN MANY

711
00:25:23,351 --> 00:25:24,652
AREAS BUT HERE WE ARE TALKING

712
00:25:24,652 --> 00:25:25,887
ABOUT THE FACT THAT WE ARE

713
00:25:25,887 --> 00:25:27,722
WAITING UNTIL CHILDREN ARE

714
00:25:27,722 --> 00:25:28,756
DIAGNOSED. BEFORE WE START

715
00:25:28,756 --> 00:25:31,793
INTERVENTION. WE COULD BE

716
00:25:31,793 --> 00:25:33,127
STARTING INTERVENTION EARLIER.

717
00:25:33,127 --> 00:25:35,230
WHAT MIGHT THAT LOOK LIKE? THERE

718
00:25:35,230 --> 00:25:36,965
IS OTHER CHALLENGES WE SEE

719
00:25:36,965 --> 00:25:38,700
ENROLLING YOUNG CHILDREN IN

720
00:25:38,700 --> 00:25:40,034
CLINICAL TRIALS THAT MAY ALSO BE

721
00:25:40,034 --> 00:25:42,203
IMPACTING OUR OUTCOMES.  FIRST

722
00:25:42,203 --> 00:25:45,073
IS THIS IDEA FAMILY MIGHT BE

723
00:25:45,073 --> 00:25:45,840
INTRODUCED TO THIS CLINICAL

724
00:25:45,840 --> 00:25:48,676
TRIAL FOR A TRIAL FOR CHILDREN

725
00:25:48,676 --> 00:25:49,978
WITH CEREBRAL PALSY. HOWEVER

726
00:25:49,978 --> 00:25:52,981
MANY YOUNG CHILDREN ARE NOW

727
00:25:52,981 --> 00:25:56,518
DIAGNOSED WITH ENCEPHALOPATHY OR

728
00:25:56,518 --> 00:25:59,220
WHITE MATTER INJURY OR

729
00:25:59,220 --> 00:26:00,288
INTERVENTIONAL HEMORRHAGE.

730
00:26:00,288 --> 00:26:01,656
PARENTS ARE TOLD THOSE TERMS AND

731
00:26:01,656 --> 00:26:02,891
NOT NECESSARILY THE TERMS

732
00:26:02,891 --> 00:26:05,059
CEREBRAL PALSY. AS A RESULT THEY

733
00:26:05,059 --> 00:26:08,796
MAY NOT THINK THEIR CHILD IS

734
00:26:08,796 --> 00:26:10,298
ELIGIBLE. ON TOP OF THAT THE

735
00:26:10,298 --> 00:26:13,535
INCREASING NUMBER OF GENETIC

736
00:26:13,535 --> 00:26:14,569
DIAGNOSES YOU HEARD ABOUT

737
00:26:14,569 --> 00:26:16,304
YESTERDAY AND YOU HAVE TO THINK

738
00:26:16,304 --> 00:26:18,673
ABOUT PARENTS TO IDENTIFY DOES

739
00:26:18,673 --> 00:26:20,308
MY CHILD MEET ELIGIBILITY

740
00:26:20,308 --> 00:26:21,276
CRITERIA, SHOULD I CALL THIS

741
00:26:21,276 --> 00:26:23,912
FAMILY. WE OFTEN FIND FAMILIES

742
00:26:23,912 --> 00:26:27,115
SAYING MY CHILD HAS HYDRO

743
00:26:27,115 --> 00:26:28,249
SYPHILOUS, MY CHILD HAS BRAIN

744
00:26:28,249 --> 00:26:29,450
INJURY, THEY DON'T HAVE CEREBRAL

745
00:26:29,450 --> 00:26:31,786
PALSY, THEY CAN'T PARTICIPATE.

746
00:26:31,786 --> 00:26:35,623
OTHER FAMILIES SAY NO MY BABY IS

747
00:26:35,623 --> 00:26:37,392
A PRIMEIE SO THEY WILL GROW OUT

748
00:26:37,392 --> 00:26:38,826
OF THEIR PROBLEMS AS THEY GET

749
00:26:38,826 --> 00:26:40,562
BIGGER SO NOT ELIGIBLE NOR STUDY

750
00:26:40,562 --> 00:26:42,197
ON CEREBRAL PALSY. THIS

751
00:26:42,197 --> 00:26:44,165
DRASTICALLY REDUCES RATE OF

752
00:26:44,165 --> 00:26:45,567
ENROLLMENT AND INTERVENTION

753
00:26:45,567 --> 00:26:47,135
STUDIES FOR YOUNG INFANTS SO WE

754
00:26:47,135 --> 00:26:49,270
NEED CLARITY IN DIAGNOSIS THAT

755
00:26:49,270 --> 00:26:51,139
WHILE ETIOLOGY MAYBE RELATED TO

756
00:26:51,139 --> 00:26:54,342
A BRAIN INJURY, OR GENETIC

757
00:26:54,342 --> 00:26:55,543
CONDITIONS MANY KIDS ARE

758
00:26:55,543 --> 00:26:56,778
ELIGIBLE FOR INTERVENTION

759
00:26:56,778 --> 00:26:57,712
STUDIES THAT ARE DESIGNED FOR

760
00:26:57,712 --> 00:27:00,481
KIDS WITH CEREBRAL PALSY. SO

761
00:27:00,481 --> 00:27:01,382
WHERE DO WE GO WITH THIS

762
00:27:01,382 --> 00:27:04,686
INFORMATION? SO EVIDENCE INFORMS

763
00:27:04,686 --> 00:27:06,087
CARE PLANNING IS NEEDED. WE NEED

764
00:27:06,087 --> 00:27:08,122
TO TAKE THE INFORMATION WE HAVE

765
00:27:08,122 --> 00:27:10,391
AND START WITH NEONATAL

766
00:27:10,391 --> 00:27:11,859
INTENSIVE CARE UNIT AND CONTINUE

767
00:27:11,859 --> 00:27:13,294
TO EARLY INTERVENTION AND EARLY

768
00:27:13,294 --> 00:27:15,763
DIAGNOSIS. ULTIMATELY WE WANT

769
00:27:15,763 --> 00:27:18,633
PARENTS TO GET TO THE POINT OF

770
00:27:18,633 --> 00:27:20,001
DIAGNOSIS, ALL READY FEELING

771
00:27:20,001 --> 00:27:21,536
LIKE THEY ARE INDEPENDENT AND

772
00:27:21,536 --> 00:27:23,004
CAPABLE OF SUPPORTING INFANT

773
00:27:23,004 --> 00:27:24,572
DEVELOPMENT. THAT DOESN'T MEAN

774
00:27:24,572 --> 00:27:26,107
WE ARE NOT LOOKING AT EARLY

775
00:27:26,107 --> 00:27:27,742
DETECTION, IT MEANS IT IS JUST

776
00:27:27,742 --> 00:27:28,776
IMPORTANT TO SUPPORT PARENTS

777
00:27:28,776 --> 00:27:31,279
UNTIL THEY GET THERE. SO WHEN WE

778
00:27:31,279 --> 00:27:32,847
THINK ABOUT WHAT THE NEXT STEP

779
00:27:32,847 --> 00:27:35,283
ISIS. WE THINK PARENTS ASKING

780
00:27:35,283 --> 00:27:36,484
WHICH INTERVENTION IS BEST FOR

781
00:27:36,484 --> 00:27:38,019
THEIR CHILD. ALL THESE CHILDREN

782
00:27:38,019 --> 00:27:39,954
SHOULD BE GOING THROUGH THE

783
00:27:39,954 --> 00:27:40,888
EARLY DETECTION GUIDELINES AND

784
00:27:40,888 --> 00:27:43,157
BEING IDENTIFIED AS HIGH RISK OR

785
00:27:43,157 --> 00:27:44,225
NOT BUT THE TREATMENT SHOULD BE

786
00:27:44,225 --> 00:27:45,627
DIFFERENT DEPENDING ON WHICH OF

787
00:27:45,627 --> 00:27:46,961
THESE CATEGORIZATIONS THEY FALL

788
00:27:46,961 --> 00:27:50,098
INTO. SO A CHILD WHO HAS

789
00:27:50,098 --> 00:27:51,466
UNILATERAL INJURY IS LIKELY TO

790
00:27:51,466 --> 00:27:53,868
BENEFIT FROM CIFT OR BIMANUAL

791
00:27:53,868 --> 00:27:54,802
THERAPY THAT SHOULD BE STARTED

792
00:27:54,802 --> 00:27:58,473
AS SOON AS POSSIBLE. WHY WOULD

793
00:27:58,473 --> 00:27:59,807
CHILDREN WHO HAVE BILATERAL

794
00:27:59,807 --> 00:28:01,609
INJURY MAY BENEFIT FROM GAME OR

795
00:28:01,609 --> 00:28:03,544
EYE MOVE TO LOOK AT MOTOR

796
00:28:03,544 --> 00:28:04,712
FUNCTION OR START PLAY TO LOOK

797
00:28:04,712 --> 00:28:07,382
AT MOTOR COGNITIVE FUNCTION. IN

798
00:28:07,382 --> 00:28:08,483
MANY CONTRAST IF WE CAN IDENTIFY

799
00:28:08,483 --> 00:28:12,186
THE KIDS WHO ARE NOT AT HIGH

800
00:28:12,186 --> 00:28:13,454
RISK WE CAN DELAY THE REDUCE

801
00:28:13,454 --> 00:28:14,656
AMOUNT OF INTERVENTION THOSE

802
00:28:14,656 --> 00:28:17,125
CHILDREN ARE GETTING AND TRULY

803
00:28:17,125 --> 00:28:18,626
EXPLAIN TO FAMILIES WHY, TO BE

804
00:28:18,626 --> 00:28:20,561
ABLE TO SAY YOUR CHILD HAS A

805
00:28:20,561 --> 00:28:22,797
DELAY BUT DOESN'T HAVE CEREBRAL

806
00:28:22,797 --> 00:28:24,465
PALSY MAY WARRANT PARENT

807
00:28:24,465 --> 00:28:26,134
COACHING AND PROGRESS MONITORING

808
00:28:26,134 --> 00:28:27,268
ENCOURAGING PARENTS TO CONTINUE

809
00:28:27,268 --> 00:28:29,237
TO SUPPORT THEIR CHILD

810
00:28:29,237 --> 00:28:30,605
DEVELOPMENT. WHILE HAVING NO

811
00:28:30,605 --> 00:28:33,908
DELAY AND NO RISK, MAY WARRANT

812
00:28:33,908 --> 00:28:35,043
ANTICIPATORY GUIDANCE AND

813
00:28:35,043 --> 00:28:36,544
REASSESSMENT OF REGULAR

814
00:28:36,544 --> 00:28:37,812
INTERVALS BUT THESE CHILDREN

815
00:28:37,812 --> 00:28:39,314
DON'T NECESSARILY NEED INTENSITY

816
00:28:39,314 --> 00:28:40,948
OF INTERVENTION WHICH SOMETIMES

817
00:28:40,948 --> 00:28:42,884
THEY ARE PROVIDED BECAUSE

818
00:28:42,884 --> 00:28:46,120
PARENTS ARE VERY GOOD ADVOCATES

819
00:28:46,120 --> 00:28:47,722
BUT DON'T NEED AS MUCH SERVICE

820
00:28:47,722 --> 00:28:50,892
AS CHILD WITH CEREBRAL PALSY. SO

821
00:28:50,892 --> 00:28:52,727
ARE WE NOW? WE A NEED FOR

822
00:28:52,727 --> 00:28:53,928
RESEARCH AND INTERVENTION.

823
00:28:53,928 --> 00:28:55,363
ENCOURAGE EARLY DIAGNOSES AND

824
00:28:55,363 --> 00:28:57,098
THE CONVERSATIONS ABOUT CEREBRAL

825
00:28:57,098 --> 00:28:59,534
PALSY AND PARTICIPATION IN CP

826
00:28:59,534 --> 00:29:02,603
SPECIFIC RESEARCH. BUILDING IN

827
00:29:02,603 --> 00:29:04,439
THAT WORK SOMETHING LIKE CP NET

828
00:29:04,439 --> 00:29:06,741
OR STROKE NET FOR CP. WOULD BE

829
00:29:06,741 --> 00:29:09,844
AN EXCELLENT WAY TO INCREASE THE

830
00:29:09,844 --> 00:29:10,611
NUMBER OF CLINICAL TRIALS THAT

831
00:29:10,611 --> 00:29:12,313
ARE BEING DONE ACROSS THE

832
00:29:12,313 --> 00:29:14,482
COUNTRY SO ALL FAMILIES WHO WANT

833
00:29:14,482 --> 00:29:16,818
TO PARTICIPATE IN RESEARCH CAN

834
00:29:16,818 --> 00:29:22,423
AND CAN FIND A JO APPROPRIATE FR

835
00:29:22,423 --> 00:29:24,359
THEIR CHILD. WE NEED RESEARCH ON

836
00:29:24,359 --> 00:29:26,627
BILATERAL CP OR INJURIES THAT

837
00:29:26,627 --> 00:29:27,562
OCCUR AFFECTING BOTH SIDES OF

838
00:29:27,562 --> 00:29:30,998
THE BODY. WE NEED TO CATCH UP

839
00:29:30,998 --> 00:29:33,401
WHERE UNILATERAL RESEARCH IS. WE

840
00:29:33,401 --> 00:29:35,670
NEED STUDY ON IMPACT OF

841
00:29:35,670 --> 00:29:37,138
PROVIDING INTERVENTION PRIOR TO

842
00:29:37,138 --> 00:29:39,540
DIAGNOSIS AND CONSIDERING DOES

843
00:29:39,540 --> 00:29:41,342
THIS PRIME PARENTS AND INFANTS

844
00:29:41,342 --> 00:29:43,411
TO PROVIDE MORE APPROPRIATE

845
00:29:43,411 --> 00:29:45,246
SERVICES, TO THEIR CHILD WHEN

846
00:29:45,246 --> 00:29:47,348
THEY ARE DIAGNOSED WITH CP. WE

847
00:29:47,348 --> 00:29:48,616
HAVE TO CONSIDER THE NEEDS OF

848
00:29:48,616 --> 00:29:50,585
PARENTS AT EACH AND EVERY STAGE

849
00:29:50,585 --> 00:29:51,719
AROUND THIS. I WILL CLOSE TODAY

850
00:29:51,719 --> 00:29:53,454
WITH A QUOTE FROM A PARENT WHO

851
00:29:53,454 --> 00:29:55,890
PARTICIPATED IN ONE OF OUR

852
00:29:55,890 --> 00:29:57,091
INTERVENTION TRIALS AROUND

853
00:29:57,091 --> 00:29:59,127
SPEED. HIS FATHER SAID AT FIRST

854
00:29:59,127 --> 00:30:01,496
IT WAS HARD UNTIL WE GOT INTO A

855
00:30:01,496 --> 00:30:04,599
ROUTINE. BUT AT FIRST SPEEDY

856
00:30:04,599 --> 00:30:06,734
ACTIVITIES WERE HARD BUT NOW IT

857
00:30:06,734 --> 00:30:09,370
IS LIKE PART OF THE DAY. LIKE

858
00:30:09,370 --> 00:30:11,939
BREATHING. IT IS JUST SOMETHING

859
00:30:11,939 --> 00:30:13,574
WE DO. IF WE CAN EMPOWER

860
00:30:13,574 --> 00:30:15,543
FAMILIES TO DO INTERVENTION WITH

861
00:30:15,543 --> 00:30:17,812
THEIR BABY IN A WAY THAT IS

862
00:30:17,812 --> 00:30:20,214
PLAYFUL AND PART OF THEIR DAILY

863
00:30:20,214 --> 00:30:22,150
ROUTINE, IN THE FIRST MONTHS OF

864
00:30:22,150 --> 00:30:24,051
LIFE THEY WILL BE PREPARED TO

865
00:30:24,051 --> 00:30:25,253
SUPPORT THEIR INFANT WITH AN

866
00:30:25,253 --> 00:30:29,991
EARLY DIAGNOSIS OF CP IN A WAY

867
00:30:29,991 --> 00:30:31,793
TO ADVANCE OUR FIELD AS WELL AS

868
00:30:31,793 --> 00:30:35,463
DEVELOPMENT OF THAT INDIVIDUAL

869
00:30:35,463 --> 00:30:38,533
TRIAL CHILD. I THANK YOU FOR

870
00:30:38,533 --> 00:30:40,601
YOUR ATTENTION TODAY AND THANK

871
00:30:40,601 --> 00:30:42,170
THE SIDES AND COLLABORATORS AND

872
00:30:42,170 --> 00:30:42,970
THERAPISTS PARTICIPATING IN THIS

873
00:30:42,970 --> 00:30:44,305
RESEARCH AND OUR FUNDING SOURCES

874
00:30:44,305 --> 00:30:45,973
AND THE NIH NOR ALLOWING US TO

875
00:30:45,973 --> 00:30:49,510
BE HERE TODAY.  THANK YOU. FOR

876
00:30:49,510 --> 00:30:50,478
ALLOWING US TO BE HERE.

877
00:30:50,478 --> 00:30:55,249
>> MY NAME IS KATIE
HOUSTON, I'M

878
00:30:55,249 --> 00:30:58,286
HERE TO TALK ABOUT A

879
00:30:58,286 --> 00:31:00,822
LONGITUDINAL PROJECT I CAN

880
00:31:00,822 --> 00:31:02,757
WORKING ON FOR 15 YEARS, SPEECH

881
00:31:02,757 --> 00:31:03,724
AND LANGUAGE DEVELOPMENT IN

882
00:31:03,724 --> 00:31:04,926
CHILDREN WITH CEREBRAL PALSY. I

883
00:31:04,926 --> 00:31:06,294
WILL GIVE A FEW HIGHLIGHTS OF

884
00:31:06,294 --> 00:31:08,329
OUR LONGITUDINAL FINDINGS

885
00:31:08,329 --> 00:31:13,034
FOCUSED SPECIFICALLY ON SPEECH

886
00:31:13,034 --> 00:31:14,402
IN CHILDREN AND YOUNG ADULTS

887
00:31:14,402 --> 00:31:16,704
WITH CEREBRAL PALSY. SO I'M

888
00:31:16,704 --> 00:31:19,240
GOING TO CUT TO THE CHASE HERE

889
00:31:19,240 --> 00:31:19,774
CINESEISMOGRAPHY PSALM OUR

890
00:31:19,774 --> 00:31:21,542
AUDIENCE IS LARGELY FAMILIAR

891
00:31:21,542 --> 00:31:23,110
WITH CEREBRAL PALSY. AND GENERAL

892
00:31:23,110 --> 00:31:24,579
CHARACTERISTICS AS MEDICAL

893
00:31:24,579 --> 00:31:26,714
CONDITION. AND FOCUS RIGHT IN

894
00:31:26,714 --> 00:31:28,149
HON COMMUNICATION IN THIS

895
00:31:28,149 --> 00:31:30,952
POPULATION FOR MANY MANY YEARS

896
00:31:30,952 --> 00:31:32,887
COMMUNICATION WAS GROSSLY

897
00:31:32,887 --> 00:31:34,388
UNDERSTUDY AND OVERLOOK AND I'M

898
00:31:34,388 --> 00:31:37,158
HAPPY TO SAY THAT THERE'S BEEN

899
00:31:37,158 --> 00:31:38,893
MORE RESEARCH ATTENTION FOCUS ON

900
00:31:38,893 --> 00:31:41,329
THE FEATURES OF COMMUNICATION IN

901
00:31:41,329 --> 00:31:43,197
INDIVIDUALS WITH CP AND

902
00:31:43,197 --> 00:31:44,432
POPULATION CHARACTERISTICS AS

903
00:31:44,432 --> 00:31:45,633
WELL AS INTERVENTIONS FOR THIS

904
00:31:45,633 --> 00:31:48,903
POPULATION. SO AS WE KNOW

905
00:31:48,903 --> 00:31:50,605
CHILDREN WITH CP ARE AT

906
00:31:50,605 --> 00:31:51,806
CONSIDERABLE RISK FOR SPEECH

907
00:31:51,806 --> 00:31:53,407
LANGUAGE AND COMMUNICATION

908
00:31:53,407 --> 00:31:55,176
PROBLEMS. THERE ARE WIDE RANGE

909
00:31:55,176 --> 00:31:57,345
OF POTENTIAL CO-OCCURRING

910
00:31:57,345 --> 00:31:59,113
DEFICITS AND SPEECH ROBS ARE

911
00:31:59,113 --> 00:32:01,182
VERY COMMON IN THIS POPULATION

912
00:32:01,182 --> 00:32:04,085
SO OUR FOCUS TODAY IS GOING TO

913
00:32:04,085 --> 00:32:05,853
BE ON INDIVIDUALS WITH SPEECH

914
00:32:05,853 --> 00:32:07,588
PROBLEMS PARTICULARLY THE MOTOR

915
00:32:07,588 --> 00:32:10,424
SPEECH DISORDER KNOWN AS

916
00:32:10,424 --> 00:32:11,592
DISARTHEROIA. I WILL TALK ABOUT

917
00:32:11,592 --> 00:32:16,030
WHAT THAT IS IN JUST A MOMENT.

918
00:32:16,030 --> 00:32:18,165
SO DISART THREEIA IS THE

919
00:32:18,165 --> 00:32:20,001
PHYSICAL MANIFESTATION IN IF

920
00:32:20,001 --> 00:32:22,470
SPEECH MUSCULATURE OF THE MOTOR

921
00:32:22,470 --> 00:32:24,739
PROBLEMS THAT WE SEE IN THE REST

922
00:32:24,739 --> 00:32:28,042
OF THE BODY FOR INDIVIDUALS WITH

923
00:32:28,042 --> 00:32:30,711
CP. IT DOES NOT ALWAYS CO-OCCUR

924
00:32:30,711 --> 00:32:33,247
IN CP, WE CAN'T HAVE INDIVIDUAL

925
00:32:33,247 --> 00:32:35,483
-- WE CAN HAVE INDIVIDUALS WITH

926
00:32:35,483 --> 00:32:37,718
CP WITH NO SPEECH INVOLVEMENT IN

927
00:32:37,718 --> 00:32:39,387
SPEECH MUSCULATURE AND WE CAN

928
00:32:39,387 --> 00:32:41,789
HAVE INDIVIDUALS WITH CP WITH

929
00:32:41,789 --> 00:32:42,957
SIGNIFICANT DISART THREEIA AND

930
00:32:42,957 --> 00:32:45,760
HAVE VERY LIMITED INVOLVEMENT IN

931
00:32:45,760 --> 00:32:48,563
THE REST OF THEIR BODY IN TERMS

932
00:32:48,563 --> 00:32:50,364
OF MOTOR CONTROL CHALLENGES SO

933
00:32:50,364 --> 00:32:52,400
IT IS NOT A ONE TO ONE

934
00:32:52,400 --> 00:32:53,467
RELATIONSHIP, THOUGH GENERALLY

935
00:32:53,467 --> 00:32:56,837
THE MORE SEVERE AN INDIVIDUAL'S

936
00:32:56,837 --> 00:32:58,573
MOTOR IMPAIRMENT IS WITH REGARD

937
00:32:58,573 --> 00:33:00,574
TO GROSS MOTOR FUNCTION THE MORE

938
00:33:00,574 --> 00:33:03,778
LIKELY WE ARE TO SEE A SEVERE

939
00:33:03,778 --> 00:33:05,012
DISARTHEROIA. SO THERE ARE

940
00:33:05,012 --> 00:33:06,447
CORRELATIONS BUT NOT ALWAYS THE

941
00:33:06,447 --> 00:33:10,017
CASE THAT SPEECH MOTOR PROBLEMS

942
00:33:10,017 --> 00:33:12,753
ARE DISARTHEROIA CO-OCCURS WITH

943
00:33:12,753 --> 00:33:15,923
OTHER PROBLEMS. ONE CHALLENGE WE

944
00:33:15,923 --> 00:33:18,225
FACE WITH IT THAT OCCURS IN 50

945
00:33:18,225 --> 00:33:20,595
TO 80% OF CHILDREN WITH CEREBRAL

946
00:33:20,595 --> 00:33:22,930
PALSY, IS EARLY IDENTIFICATION.

947
00:33:22,930 --> 00:33:24,966
SO THE BIG CHALLENGE IS THAT

948
00:33:24,966 --> 00:33:26,968
THERE IS SIGNIFICANT OVERLAP

949
00:33:26,968 --> 00:33:28,970
BETWEEN EARLY DEVELOPMENTAL

950
00:33:28,970 --> 00:33:30,838
FEATURES OF SPEECH THAT EMERGE

951
00:33:30,838 --> 00:33:33,941
IN TYPICAL CHILDREN AND FEATURES

952
00:33:33,941 --> 00:33:36,010
OF DISARTHEROIA. OR EXAMPLE

953
00:33:36,010 --> 00:33:37,578
REDUCED RATE OF SPEECH,

954
00:33:37,578 --> 00:33:41,115
DISTORTIONS IN THE PRODUCTION OF

955
00:33:41,115 --> 00:33:42,249
SPEECH SOUNDS, AND VOICE QUALITY

956
00:33:42,249 --> 00:33:44,485
KINDS OF ISSUES, AND THINGS LIKE

957
00:33:44,485 --> 00:33:46,821
THAT SO CAN BE VERY HARD TO DO

958
00:33:46,821 --> 00:33:48,622
DIFFERENTIAL DIAGNOSIS ON NORMAL

959
00:33:48,622 --> 00:33:51,826
SPEECH MOTOR DEVELOPMENT AND

960
00:33:51,826 --> 00:33:54,328
SPEECH ACQUISITION AND

961
00:33:54,328 --> 00:33:55,663
DISARTHEROIA FEATURES OF SPEECH

962
00:33:55,663 --> 00:33:57,765
IN YOUNG CHILDREN. AS WE KNOW,

963
00:33:57,765 --> 00:34:00,167
EARLY IDENTIFICATION IS ALWAYS

964
00:34:00,167 --> 00:34:01,802
BETTER BECAUSE WE CAN GET TO

965
00:34:01,802 --> 00:34:03,771
EARLIER TREATMENT AND HOPEFULLY

966
00:34:03,771 --> 00:34:06,040
WE CAN GET BETTER OUTCOMES FOR

967
00:34:06,040 --> 00:34:08,409
OUR INDIVIDUALS WITH CP. BY

968
00:34:08,409 --> 00:34:10,444
BETTER OUTCOMES HERE I'M TALKING

969
00:34:10,444 --> 00:34:13,047
ABOUT IMPROVED QUALITY OF LIFE

970
00:34:13,047 --> 00:34:15,016
BECAUSE OF IMPROVED ABILITY TO

971
00:34:15,016 --> 00:34:16,717
COMMUNICATE FUNCTIONALLY AND

972
00:34:16,717 --> 00:34:17,918
MEANINGFULLY. WE ARE ALWAYS

973
00:34:17,918 --> 00:34:21,155
TRYING TO CAPITALIZE ON

974
00:34:21,155 --> 00:34:22,423
NEUROPLASTICITY SO EARLY

975
00:34:22,423 --> 00:34:24,191
INTERVENTION GETS US THE ABILITY

976
00:34:24,191 --> 00:34:26,727
TO LEVERAGE NEUROPLASTICITY,

977
00:34:26,727 --> 00:34:28,329
MORE SO THAN INTERVENTION OF

978
00:34:28,329 --> 00:34:32,366
LATER AGENTS. SO IN MY

979
00:34:32,366 --> 00:34:33,534
LABORATORY UNIVERSITY OF

980
00:34:33,534 --> 00:34:37,304
WISCONSIN MADISON, THE WIS LAB

981
00:34:37,304 --> 00:34:40,875
WE ARE INTEREST IN TWO GENERAL

982
00:34:40,875 --> 00:34:41,642
GOALS FOCUSED ON INDIVIDUALS

983
00:34:41,642 --> 00:34:44,845
WITH CEREBRAL PALSY. FIRST WE

984
00:34:44,845 --> 00:34:46,180
ARE INTERESTED IN GENERATING

985
00:34:46,180 --> 00:34:48,816
PROSPECTIVE DATABASED

986
00:34:48,816 --> 00:34:50,718
LONGITUDINAL MODELS OF SPEECH

987
00:34:50,718 --> 00:34:51,385
AND LANGUAGE DEVELOPMENT SO WHAT

988
00:34:51,385 --> 00:34:53,988
WE ARE DOING IS FOLLOWING

989
00:34:53,988 --> 00:34:54,588
CHILDREN LONGITUDESNALLY AND I

990
00:34:54,588 --> 00:34:57,091
WILL TALK MORE ABOUT THAT IN A

991
00:34:57,091 --> 00:34:58,893
MOMENT. IN ORDER TO RIDE WITH

992
00:34:58,893 --> 00:35:02,029
THE NATURAL COURSE OF

993
00:35:02,029 --> 00:35:03,097
DEVELOPMENT FOR INDIVIDUALS FROM

994
00:35:03,097 --> 00:35:04,732
EARLY CHILDHOOD TO ADULTHOOD SO

995
00:35:04,732 --> 00:35:06,701
WE CAN SEE HOW SPEECH AND

996
00:35:06,701 --> 00:35:08,903
LANGUAGE AND COMMUNICATION

997
00:35:08,903 --> 00:35:10,204
BEHAVIOR DEVELOP AND CHANGE OVER

998
00:35:10,204 --> 00:35:14,942
TIME AND USE THIS OBSERVATIONAL

999
00:35:14,942 --> 00:35:18,813
DATA TO PREDICT OUTCOMES AND

1000
00:35:18,813 --> 00:35:20,915
GUIDE TREATMENT DECISION MAKING

1001
00:35:20,915 --> 00:35:22,550
SO DEVELOPING STATISTIC ALVING

1002
00:35:22,550 --> 00:35:24,685
MODELS BASED ON OBSERVED DATA TO

1003
00:35:24,685 --> 00:35:27,688
PREDICT WHERE KIDS END UP. WE

1004
00:35:27,688 --> 00:35:29,123
ARE INTERESTED IN DEVELOPING AND

1005
00:35:29,123 --> 00:35:32,126
TESTING ASSESSMENTS AND

1006
00:35:32,126 --> 00:35:33,260
INTERVENTIONS FOR SPEECH

1007
00:35:33,260 --> 00:35:34,261
LANGUAGE AND COMMUNICATION

1008
00:35:34,261 --> 00:35:39,300
PROBLEMS IN THIS POPULATION. SO

1009
00:35:39,300 --> 00:35:41,068
AGAIN, THE EARLIER WE CAN

1010
00:35:41,068 --> 00:35:42,303
IDENTIFY CHILDREN THE EARLIER TO

1011
00:35:42,303 --> 00:35:43,204
TREATMENT AND BETTER TREATMENT

1012
00:35:43,204 --> 00:35:45,706
WE CAN DEVELOP AND USE THE WITH

1013
00:35:45,706 --> 00:35:47,041
BETTER OUTCOMES WE HAVE THIS

1014
00:35:47,041 --> 00:35:48,676
THIS POPULATION IN TERMS OF

1015
00:35:48,676 --> 00:35:50,010
QUALITY OF LIFE AND FUNCTIONAL

1016
00:35:50,010 --> 00:35:55,950
COMMUNICATION ABILITIES.  SO IN

1017
00:35:55,950 --> 00:35:56,784
THE LAST SINCE 2005 WE HAVE

1018
00:35:56,784 --> 00:35:59,687
STUDYING A POPULATION OF ABOUT

1019
00:35:59,687 --> 00:36:02,223
SO 125 DIFFERENT CHILDREN WITH

1020
00:36:02,223 --> 00:36:05,593
CP. WE CAST A BROAD NET IN

1021
00:36:05,593 --> 00:36:06,327
RECRUITMENT OF THESE CHILDREN

1022
00:36:06,327 --> 00:36:08,696
FROM UPPER MIDWEST REGION OF THE

1023
00:36:08,696 --> 00:36:09,597
UNITED STATES, WITHIN DRIVING

1024
00:36:09,597 --> 00:36:11,132
DISTANCE OF MADISON, WISCONSIN

1025
00:36:11,132 --> 00:36:15,136
WHERE WE ARE LOCATED. WE HAVE NO

1026
00:36:15,136 --> 00:36:18,572
CRITERIA RELATED TO ANYTHING

1027
00:36:18,572 --> 00:36:20,174
EXCEPT CHILDREN HAVE DIAGNOSIS

1028
00:36:20,174 --> 00:36:23,110
OF CP OR SOMETHING RELATED TO

1029
00:36:23,110 --> 00:36:25,446
CP. PERIVENTRICULAR

1030
00:36:25,446 --> 00:36:28,949
LEUKOMALAYSIA OR NEONATAL

1031
00:36:28,949 --> 00:36:31,719
STROKE. FOR EXAMPLE. SO THE ONLY

1032
00:36:31,719 --> 00:36:33,120
THING WE REQUIRE OF CHILDREN IS

1033
00:36:33,120 --> 00:36:34,889
THEY DON'T HAVE EVIDENCE OF

1034
00:36:34,889 --> 00:36:36,190
HEARING IMPAIRMENT BECAUSE WE

1035
00:36:36,190 --> 00:36:39,693
KNOW THAT HEARING IMPAIRMENT

1036
00:36:39,693 --> 00:36:42,429
RESULTS IN VERY DIFFERENT GROWTH

1037
00:36:42,429 --> 00:36:43,297
STRAY VECTOR TORRYS AND

1038
00:36:43,297 --> 00:36:45,232
DEVELOPMENTAL ISSUES THAN FOR

1039
00:36:45,232 --> 00:36:46,300
INDIVIDUALS WHO DON'T HAVE

1040
00:36:46,300 --> 00:36:47,201
HEARING IMPAIRMENT WITH REGARD

1041
00:36:47,201 --> 00:36:47,935
TO SPEECH AND LANGUAGE

1042
00:36:47,935 --> 00:36:50,171
DEVELOPMENT. SO AT THIS POINT IN

1043
00:36:50,171 --> 00:36:54,809
TIME WE HAVE SEEN OUR CHILDREN

1044
00:36:54,809 --> 00:36:57,011
ABOUT 20 TIMES OVER THE COURSE

1045
00:36:57,011 --> 00:37:00,047
OF THE LAST 17 YEARS. AND

1046
00:37:00,047 --> 00:37:01,882
RECENTLY WE HAVE ADDED BABIES

1047
00:37:01,882 --> 00:37:04,084
WHO ARE AT RISK FOR CP BECAUSE

1048
00:37:04,084 --> 00:37:06,153
OF EXTENDED STAY IN THE NEONATAL

1049
00:37:06,153 --> 00:37:07,755
INTENSIVE CARE UNIT. THIS IS

1050
00:37:07,755 --> 00:37:08,722
RIGHT BEFORE THE PANDEMIC THAT

1051
00:37:08,722 --> 00:37:10,457
WE BEGAN SEEING THESE CHILDREN

1052
00:37:10,457 --> 00:37:12,259
SO WE HAVE HAD SOME DATA

1053
00:37:12,259 --> 00:37:14,228
COLLECTION CHALLENGES ASSOCIATED

1054
00:37:14,228 --> 00:37:16,463
WITH THE PANDEMIC BUT WE ARE

1055
00:37:16,463 --> 00:37:19,033
FOLLOWING 38 OF THESE CHILDREN

1056
00:37:19,033 --> 00:37:20,367
TO TRY TO UNDERSTAND THE

1057
00:37:20,367 --> 00:37:22,403
EARLIEST PRECURSORS FOR THE

1058
00:37:22,403 --> 00:37:23,737
ONSET OF SPEECH DEVELOPMENT. SO

1059
00:37:23,737 --> 00:37:26,507
THIS IS ALL A PROSPECT ACTIVE

1060
00:37:26,507 --> 00:37:27,808
BEHAVIORAL SPEECH AND LANGUAGE

1061
00:37:27,808 --> 00:37:29,376
STUDY WHICH MAKES IT VERY

1062
00:37:29,376 --> 00:37:30,344
DIFFERENT FROM OTHER RESEARCH

1063
00:37:30,344 --> 00:37:32,580
THAT IS PUBLISHED RECENTLY THAT

1064
00:37:32,580 --> 00:37:34,915
HAS INVOLVED MORE INDIRECT

1065
00:37:34,915 --> 00:37:36,584
METHODS, CHARACTERIZING CHILDREN

1066
00:37:36,584 --> 00:37:39,854
AND THEIR COMMUNICATION

1067
00:37:39,854 --> 00:37:41,522
ABILITIES WHERE CHART REVIEWS

1068
00:37:41,522 --> 00:37:43,324
AND EPIDEMIOLOGICAL STUDIES HAVE

1069
00:37:43,324 --> 00:37:45,626
LOOKED MORE INDIRECTLY AND MORE

1070
00:37:45,626 --> 00:37:47,228
HOLISTICALLY AT ABILITIES IN

1071
00:37:47,228 --> 00:37:49,730
THESE CHILDREN. SO WE ARE

1072
00:37:49,730 --> 00:37:51,732
LOOKING AT WHAT WE SEE IN TERMS

1073
00:37:51,732 --> 00:37:54,335
OF SPEECH PRODUCTION, LANGUAGE

1074
00:37:54,335 --> 00:37:56,303
RECEPTIVE AND EXPRESSIVE

1075
00:37:56,303 --> 00:37:57,838
ABILITIES, COGNITIVE DEVELOPMENT

1076
00:37:57,838 --> 00:37:59,240
AND MULTI-MODAL COMMUNICATION.

1077
00:37:59,240 --> 00:38:00,875
WE BRING THE CHILDREN IN TO THE

1078
00:38:00,875 --> 00:38:03,377
LAB AT THE UNIVERSITY OF

1079
00:38:03,377 --> 00:38:05,012
WISCONSIN, WE RECORD THEM WITH

1080
00:38:05,012 --> 00:38:07,881
AUDIO AND VIDE VIDEO. WE SPEND T

1081
00:38:07,881 --> 00:38:09,316
OF TIME TALKING WITH THE PARENTS

1082
00:38:09,316 --> 00:38:10,618
AND HAVING THEM COMPLETE

1083
00:38:10,618 --> 00:38:11,986
QUESTIONNAIRES ABOUT THEIR

1084
00:38:11,986 --> 00:38:15,322
OBSERVATIONS OF THEIR CHILD'S

1085
00:38:15,322 --> 00:38:17,091
DEVELOPMENT AND GATHER

1086
00:38:17,091 --> 00:38:17,825
SUPPORTING DOCUMENTATION

1087
00:38:17,825 --> 00:38:20,327
INCLUDING MEDICAL RECORDS,

1088
00:38:20,327 --> 00:38:22,263
THERAPY REPORTS, SCHOOL IEPs,

1089
00:38:22,263 --> 00:38:23,731
ET CETERA, SO WE ARE GATHERING

1090
00:38:23,731 --> 00:38:25,733
LOTS OF SOURCES OF DATA TO

1091
00:38:25,733 --> 00:38:26,567
UNDERSTAND THE COURSE OF

1092
00:38:26,567 --> 00:38:27,501
DEVELOPMENT FOR THESE CHILDREN

1093
00:38:27,501 --> 00:38:31,672
IN OUR STUDY. SO TODAY I WILL

1094
00:38:31,672 --> 00:38:32,907
TALK TO YOU ABOUT THREE OF OUR

1095
00:38:32,907 --> 00:38:36,577
KEY VARIABLES OF INTEREST FOR

1096
00:38:36,577 --> 00:38:41,982
THIS STUDY. FIRST AND FOREMOST

1097
00:38:41,982 --> 00:38:42,650
IS SPEECH INTELLIGIBILITY. EVEN

1098
00:38:42,650 --> 00:38:44,184
BEFORE THAT WE ARE INTERESTED IN

1099
00:38:44,184 --> 00:38:46,520
A PERSON'S ABILITY TO PRODUCE

1100
00:38:46,520 --> 00:38:49,356
WORDS. WE HAVE CHILDREN WITH CP

1101
00:38:49,356 --> 00:38:51,292
NOT ABLE TO PRODUCE SPEECH. SO

1102
00:38:51,292 --> 00:38:53,127
THOSE CHILDREN, I'M NO NOT GOING

1103
00:38:53,127 --> 00:38:55,162
TO TALK SPECIFICALLY TODAY,

1104
00:38:55,162 --> 00:38:57,097
BECAUSE WE ARE FOCUSING IN ON

1105
00:38:57,097 --> 00:38:58,666
SPEECH VARIABLES AND SPEECH

1106
00:38:58,666 --> 00:39:00,567
DATA. WE LOOK AT HOW

1107
00:39:00,567 --> 00:39:02,536
UNDERSTANDABLE A CHILD SPEECH

1108
00:39:02,536 --> 00:39:04,805
IS. BY MEASURING THE NUMBER OF

1109
00:39:04,805 --> 00:39:06,707
WORDS THAT UNFAMILIAR LISTENERS

1110
00:39:06,707 --> 00:39:09,009
ARE ABLE TO LISTEN TO AND

1111
00:39:09,009 --> 00:39:10,444
TRANSCRIBE CORRECTLY WHEN

1112
00:39:10,444 --> 00:39:14,214
PRESENTED WITH CHILD SPEECH. WE

1113
00:39:14,214 --> 00:39:16,717
ARE LOOKING FOR THE PRESENCE OF

1114
00:39:16,717 --> 00:39:17,751
DISARTHEROIA WHICH I MENTIONED

1115
00:39:17,751 --> 00:39:21,755
IS THAT MANIFESTATION, MOTOR COB

1116
00:39:21,755 --> 00:39:23,324
PROBLEMS IN THE SPEECH

1117
00:39:23,324 --> 00:39:25,259
MUSCULATURE SO WE ARE LOOKING

1118
00:39:25,259 --> 00:39:26,727
FOR EVIDENCE OF SPEECH MOTOR

1119
00:39:26,727 --> 00:39:28,629
CONTROL ISSUES AND THINK ABOUT

1120
00:39:28,629 --> 00:39:30,531
SEVERITY OF THOSE SPEECH MOTOR

1121
00:39:30,531 --> 00:39:33,200
CONTROL ISSUES.  FINALLY

1122
00:39:33,200 --> 00:39:35,169
LANGUAGE COMPREHENSION ABILITY.

1123
00:39:35,169 --> 00:39:36,236
AS I WON'T SHOW YOU THE LANGUAGE

1124
00:39:36,236 --> 00:39:39,406
DATA BUT WE USE LANGUAGE

1125
00:39:39,406 --> 00:39:41,108
ABILITIES AS A PROXY MORE OR

1126
00:39:41,108 --> 00:39:43,544
LESS FOR COGNITIVE DEVELOPMENT

1127
00:39:43,544 --> 00:39:45,346
AND WE ARE LOOKING AT PROFILES

1128
00:39:45,346 --> 00:39:49,016
OF CHILDREN BASED ON THEIR

1129
00:39:49,016 --> 00:39:50,284
OBSERVED BEHAVIORAL DATA TO HELP

1130
00:39:50,284 --> 00:39:51,685
UNDERSTAND WHAT THE VARIABLES

1131
00:39:51,685 --> 00:39:53,320
ARE THAT MAY INFLUENCE

1132
00:39:53,320 --> 00:39:54,288
DEVELOPMENTAL OUTCOMES WITH

1133
00:39:54,288 --> 00:40:00,661
REGARD THE SPEECH. USING THOSE

1134
00:40:00,661 --> 00:40:02,096
MEASURES WE CREATED SPEECH AND

1135
00:40:02,096 --> 00:40:05,899
LANGUAGE PROFILE GROUPS. THERE

1136
00:40:05,899 --> 00:40:06,734
ARE FOUR GROUPS AND THEY ARE

1137
00:40:06,734 --> 00:40:08,135
FAIRLY CRUDE IN NATURE. THERE IS

1138
00:40:08,135 --> 00:40:11,105
MORE TO THIS. BUT AGAIN TODAY WE

1139
00:40:11,105 --> 00:40:14,441
WILL FOCUS ON FOUR GROUPS

1140
00:40:14,441 --> 00:40:16,076
ESSENTIALLY CATEGORICAL. THESE

1141
00:40:16,076 --> 00:40:17,578
GROUPS ARE BASED ON PRESENCE OR

1142
00:40:17,578 --> 00:40:21,248
ABSENCE OF SPEECH MOTOR

1143
00:40:21,248 --> 00:40:23,016
INVOLVEMENT OR DISARTHEROIA AND

1144
00:40:23,016 --> 00:40:26,253
PRESENCE OR ABSENCE OF LANGUAGE

1145
00:40:26,253 --> 00:40:28,489
INVOLVEMENT. OUR FIRST GROUP OF

1146
00:40:28,489 --> 00:40:30,224
CHILDREN WITH A DIAGNOSIS OF

1147
00:40:30,224 --> 00:40:32,359
CEREBRAL PALSY SHOWS US NO

1148
00:40:32,359 --> 00:40:33,927
EVIDENCE OF SPEECH MOTOR

1149
00:40:33,927 --> 00:40:36,196
INVOLVEMENT. THESE ARE CHILDREN

1150
00:40:36,196 --> 00:40:37,931
WE CALL NO SPEECH MOTOR

1151
00:40:37,931 --> 00:40:40,768
INVOLVEMENT OR NSMI. THESE ARE

1152
00:40:40,768 --> 00:40:42,936
CHILDREN WITH TYPICAL SPEECH AND

1153
00:40:42,936 --> 00:40:44,805
TYPICAL LANGUAGE ABILITIES AND

1154
00:40:44,805 --> 00:40:47,741
YOU CAN SEE HERE IN THIS FIGURE

1155
00:40:47,741 --> 00:40:50,310
THAT THESE CHILDREN COMPRISE 24%

1156
00:40:50,310 --> 00:40:53,647
OF OUR POPULATION. WE ALSO HAVE

1157
00:40:53,647 --> 00:40:56,016
CHILDREN WHO DO HAVE SPEECH

1158
00:40:56,016 --> 00:40:58,185
MOTOR INVOLVEMENT SO THEY HAVE

1159
00:40:58,185 --> 00:40:59,853
EVIDENCE OF DISARTHEROIA AND

1160
00:40:59,853 --> 00:41:00,954
THEY HAVE TYPICAL LANGUAGE

1161
00:41:00,954 --> 00:41:05,159
ABILITIES SO THEY ARE ABLE TO

1162
00:41:05,159 --> 00:41:06,827
UNDERSTAND LANGUAGE JUST AS WELL

1163
00:41:06,827 --> 00:41:13,600
AS YOU OR I. THEY COMPRISE 26%

1164
00:41:13,600 --> 00:41:14,735
OF THEIR POPULATION SO A GOOD

1165
00:41:14,735 --> 00:41:17,504
CHUNK OF CHILDREN WHO HAVE MOTOR

1166
00:41:17,504 --> 00:41:18,872
CONTROL APPROXIMATE AND HAVE

1167
00:41:18,872 --> 00:41:21,875
VERY STRONG LANGUAGE SKILLS.  

1168
00:41:21,875 --> 00:41:23,277
SIMILARLY WE HAVE ANOTHER SUBSET

1169
00:41:23,277 --> 00:41:25,612
OF CHILDREN WITH SPEECH MOTOR

1170
00:41:25,612 --> 00:41:26,647
INVOLVEMENT BUT THEY HAVE

1171
00:41:26,647 --> 00:41:28,949
LANGUAGE IMPAIRMENTS SO THEY

1172
00:41:28,949 --> 00:41:30,851
ALSO VERY LIKELY HAVE A

1173
00:41:30,851 --> 00:41:32,119
CO-MORBID INTELLECTUAL

1174
00:41:32,119 --> 00:41:34,688
DISABILITY AND THEY HAVE TROUBLE

1175
00:41:34,688 --> 00:41:36,723
UNDERSTANDING ADD AT AN AGE

1176
00:41:36,723 --> 00:41:37,591
APPROPRIATE LEVEL SO CHILDREN

1177
00:41:37,591 --> 00:41:39,026
HAVE FOR SEVERE COMMUNICATION

1178
00:41:39,026 --> 00:41:41,495
CHALLENGE IN THE TWO DIFFERENT

1179
00:41:41,495 --> 00:41:42,796
FACETS OF COMMUNICATION ARE

1180
00:41:42,796 --> 00:41:44,965
IMPAIRED, THAT IS SPEECH,

1181
00:41:44,965 --> 00:41:48,068
PRODUCTION ABILITY, AND LANGUAGE

1182
00:41:48,068 --> 00:41:49,703
COMPREHENSION ABILITY. FINALLY

1183
00:41:49,703 --> 00:41:52,339
WE HAVE OUR CHILDREN WHO HAVE

1184
00:41:52,339 --> 00:41:54,475
INERTLYIA. SO CHILDREN UNABLE TO

1185
00:41:54,475 --> 00:41:56,443
PRODUCE SPEECH. SOME OF THEM ARE

1186
00:41:56,443 --> 00:41:58,512
UNABLE TO PRODUCE SPEECH BECAUSE

1187
00:41:58,512 --> 00:42:01,582
MOTOR IMPAIRMENT IS SO SEVERE,

1188
00:42:01,582 --> 00:42:06,253
THEY ARE NOT ABLE TO MOVE THE

1189
00:42:06,253 --> 00:42:08,922
MUSCLES IN THE SPEECH SYSTEM.

1190
00:42:08,922 --> 00:42:10,123
SOME OF THESE CHILDREN ARE NOT

1191
00:42:10,123 --> 00:42:12,292
ABLE TO PRODUCE SPEECH BECAUSE

1192
00:42:12,292 --> 00:42:14,194
THEY HAVE VERY SEVERE

1193
00:42:14,194 --> 00:42:17,130
INTELLECTUAL DISABILITY AND FOR

1194
00:42:17,130 --> 00:42:18,165
MANY OF THESE CHILDREN IT IS

1195
00:42:18,165 --> 00:42:22,102
VERY DIFFICULT TO DIFFERENTIATE

1196
00:42:22,102 --> 00:42:23,971
BETWEEN WHETHER OR NOT THE

1197
00:42:23,971 --> 00:42:25,772
DRIVING FEATURE OF THE INABILITY

1198
00:42:25,772 --> 00:42:28,675
TO PRODUCE SPEECH IS COGNITIVE

1199
00:42:28,675 --> 00:42:30,878
IMPAIRMENT OR MOTOR IMPAIRMENT.

1200
00:42:30,878 --> 00:42:33,213
SO THIS IS VERY CHALLENGING

1201
00:42:33,213 --> 00:42:36,350
POPULATION OF INDIVIDUALS TO

1202
00:42:36,350 --> 00:42:41,989
LOOK AT, THEY USUALLY HAVE GMS

1203
00:42:41,989 --> 00:42:43,790
--FCS LEVELS FOUR OR FIVE SO

1204
00:42:43,790 --> 00:42:44,958
CO-MORBID SEVERE MOTOR

1205
00:42:44,958 --> 00:42:46,360
IMPAIRMENT ACROSS THE WHOLE BODY

1206
00:42:46,360 --> 00:42:48,228
AS WELL.  WE ARE NOT GOING TO BE

1207
00:42:48,228 --> 00:42:49,429
TALKING ABOUT THIS SUBSET OF THE

1208
00:42:49,429 --> 00:42:51,965
POPULATION RIGHT NOW, IT IS

1209
00:42:51,965 --> 00:42:54,835
ABOUT 30ISH PERCENT OF CHILDREN

1210
00:42:54,835 --> 00:42:56,703
WITH CEREBRAL PALSY THAT WE HAVE

1211
00:42:56,703 --> 00:42:59,139
BEEN SEEING. SO TODAY I WILL

1212
00:42:59,139 --> 00:43:02,276
TALK TO YOU ABOUT SUMMARY OF OUR

1213
00:43:02,276 --> 00:43:04,011
RESEARCH FINDINGS RELATED TO

1214
00:43:04,011 --> 00:43:05,179
SPEECH DEVELOPMENT. SO THE

1215
00:43:05,179 --> 00:43:06,747
QUESTIONS WE ARE LOOKING AT ARE

1216
00:43:06,747 --> 00:43:08,649
WHAT ARE THE RATES AND LIMITS OF

1217
00:43:08,649 --> 00:43:10,083
SPEECH DEVELOPMENT IN CHILDREN

1218
00:43:10,083 --> 00:43:12,786
WITH CP WHO ARE ABLE TO PRODUCE

1219
00:43:12,786 --> 00:43:14,288
SPEECH. WHEN ARE THEY GROWING

1220
00:43:14,288 --> 00:43:17,024
MOST RAPIDLY, HOW WELL DO EARLY

1221
00:43:17,024 --> 00:43:19,626
SPEECH MILESTONES PREDICT LATER

1222
00:43:19,626 --> 00:43:22,262
OUTCOMES, SO REALLY INTERESTING

1223
00:43:22,262 --> 00:43:24,765
QUESTION IS WHICH CHILDREN WILL

1224
00:43:24,765 --> 00:43:26,266
DEVELOP FUNCTIONAL SPEAKING

1225
00:43:26,266 --> 00:43:27,434
ABILITIES AND WHICH WILL NOT.

1226
00:43:27,434 --> 00:43:29,503
THAT IS A KEY QUESTION BECAUSE

1227
00:43:29,503 --> 00:43:32,573
IT WILL HELP US TO SELECT THE

1228
00:43:32,573 --> 00:43:34,775
BEST INTERVENTION PARTICULARLY

1229
00:43:34,775 --> 00:43:36,176
TO TRACK CHILDREN TO AUGUST

1230
00:43:36,176 --> 00:43:36,910
MENTIVE ALTERNATIVE

1231
00:43:36,910 --> 00:43:38,345
COMMUNICATION INTERVENTIONS WHO

1232
00:43:38,345 --> 00:43:39,980
WE KNOW ARE NOT FUNCTIONAL

1233
00:43:39,980 --> 00:43:42,516
SPEAKERS LATER ON. WE ARE ALSO

1234
00:43:42,516 --> 00:43:44,451
INTERESTED IN THE QUESTION OF

1235
00:43:44,451 --> 00:43:46,954
HOW WELL SPEECH INTELLIGIBILITY

1236
00:43:46,954 --> 00:43:47,654
MEASURES DIFFERENTIATE AMONG

1237
00:43:47,654 --> 00:43:49,990
GROUPS OF CHILDREN WITH CP. SO

1238
00:43:49,990 --> 00:43:52,960
CAN WE IDENTIFY SPEECH PROBLEMS

1239
00:43:52,960 --> 00:43:54,628
EARLIER IN CHILDREN WITH CP SO

1240
00:43:54,628 --> 00:43:57,197
WE CAN GET TO THESE

1241
00:43:57,197 --> 00:44:00,734
INTERVENTIONS MORE QUICKLY AND

1242
00:44:00,734 --> 00:44:02,436
EARLIER AGES. SO THERE IS A LOT

1243
00:44:02,436 --> 00:44:06,440
GOING ON IN THIS FIGURE HERE BUT

1244
00:44:06,440 --> 00:44:07,908
ESSENTIALLY TOWARD THE ANSWER TO

1245
00:44:07,908 --> 00:44:09,443
THE QUESTION WHAT ARE THE RATES

1246
00:44:09,443 --> 00:44:11,712
AN LIMITS OF SPEECH DEVELOPMENT

1247
00:44:11,712 --> 00:44:15,182
AND HOW DOES SPEECH

1248
00:44:15,182 --> 00:44:15,816
INTELLIGIBILITY DEVELOP IN

1249
00:44:15,816 --> 00:44:18,785
CHILDREN WITH CP? WHAT WE HAVE

1250
00:44:18,785 --> 00:44:20,354
FOUND OVER TIME WHEN YOU LOOK AT

1251
00:44:20,354 --> 00:44:22,389
THIS FIGURE, WHAT YOU CAN SEE IS

1252
00:44:22,389 --> 00:44:25,158
EACH LINE REPRESENTS AN

1253
00:44:25,158 --> 00:44:29,129
INDIVIDUAL CHILD. ON THE X AXIS

1254
00:44:29,129 --> 00:44:30,931
WE HAVE THEIR AGE IN MONTHS

1255
00:44:30,931 --> 00:44:32,366
STARTING AT 24 MONTHS AND GOING

1256
00:44:32,366 --> 00:44:37,204
UP TO ABOUT 96 MONTHS. ON THE Y

1257
00:44:37,204 --> 00:44:38,905
AXIS WE HAVE SPEECH

1258
00:44:38,905 --> 00:44:40,107
INTELLIGIBILITY AS MEASURED BY

1259
00:44:40,107 --> 00:44:42,943
UNFAMILIAR LISTENERS SO HOW MANY

1260
00:44:42,943 --> 00:44:45,045
WORDS UNFAMILIAR LISTENERS BE

1261
00:44:45,045 --> 00:44:47,514
ABLE TO UNDERSTAND AT EACH TIME

1262
00:44:47,514 --> 00:44:49,016
POINT FOR EACH CHILD RANGING

1263
00:44:49,016 --> 00:44:51,918
FROM 0 TO 100%. THESE SCATTER

1264
00:44:51,918 --> 00:44:54,454
PLOTS ARE SOME OF OUR MODEL DATA

1265
00:44:54,454 --> 00:44:56,390
RESULTS. THIS IS ALL OUR

1266
00:44:56,390 --> 00:44:58,525
CHILDREN ACROSS ALL THOSE

1267
00:44:58,525 --> 00:45:00,127
PROFILE GROUPS EXCEPT FOR THE

1268
00:45:00,127 --> 00:45:02,462
CHILDREN WITH ANARTHR ANARTHRIAE

1269
00:45:02,462 --> 00:45:04,598
CAN SEE IS THERE IS MAJOR

1270
00:45:04,598 --> 00:45:06,500
VARIABILITY AMONG CHILDREN WITH

1271
00:45:06,500 --> 00:45:09,269
CP WITH REGARD TO THEIR GROWTH

1272
00:45:09,269 --> 00:45:10,504
TRAJECTORIES AND THEIR OUTCOMES.

1273
00:45:10,504 --> 00:45:12,706
BUT ONE OF THE THINGS WE CAN SEE

1274
00:45:12,706 --> 00:45:15,108
VERY CLEARLY IS THAT CHILDREN

1275
00:45:15,108 --> 00:45:18,512
WHO REACH 50% INTELLIGIBILITY

1276
00:45:18,512 --> 00:45:23,150
RIGHT HERE AT EARLIER AGES HAVE

1277
00:45:23,150 --> 00:45:23,984
HIGHER INTELLIGIBILITY LATER ON

1278
00:45:23,984 --> 00:45:25,485
WHEN THEY ARE OLDER. SO THE

1279
00:45:25,485 --> 00:45:27,988
SOONER YOU CROSS THESE EARLY

1280
00:45:27,988 --> 00:45:29,389
THRESHOLDS LIKE 50%

1281
00:45:29,389 --> 00:45:30,757
UNDERSTANDABLE THE BETTER YOUR

1282
00:45:30,757 --> 00:45:32,059
OUTCOMES ARE GOING TO BE. WE

1283
00:45:32,059 --> 00:45:34,394
ALSO HAVE LOOKED AT WHEN

1284
00:45:34,394 --> 00:45:35,796
CHILDREN ARE GROWING MOST

1285
00:45:35,796 --> 00:45:38,532
RAPIDLY. AND WHAT WE FOUND HERE,

1286
00:45:38,532 --> 00:45:41,068
AGAIN, IN THIS FIGURE, THIS IS

1287
00:45:41,068 --> 00:45:43,036
THE PERCENTAGE OF CHILDREN ON

1288
00:45:43,036 --> 00:45:47,374
THE Y AXIS AND ON THE Y AXIS IS

1289
00:45:47,374 --> 00:45:49,342
THE AGE THEY ARE GROWING MOST

1290
00:45:49,342 --> 00:45:51,211
RAPIDLY. SO THIS IS ACROSS ALL

1291
00:45:51,211 --> 00:45:53,513
CHILDREN WITH CP. WHAT WE CAN

1292
00:45:53,513 --> 00:45:56,583
SEE IS THAT 36 TO 60 MONTHS IS A

1293
00:45:56,583 --> 00:45:58,685
CRITICAL TIME FOR GROWTH. MOST

1294
00:45:58,685 --> 00:46:00,120
CHILDREN WITH CP ARE GROWING

1295
00:46:00,120 --> 00:46:03,924
MOST RAPIDLY IN THEIR SPEECH

1296
00:46:03,924 --> 00:46:04,491
INTELLIGIBILITY DEVELOPMENT

1297
00:46:04,491 --> 00:46:06,526
BETWEEN 30 AND 60 MONTHS OF AGE.

1298
00:46:06,526 --> 00:46:07,561
WHAT WE KNOW ABOUT TYPICALLY

1299
00:46:07,561 --> 00:46:09,996
DEVELOPING CHILDREN IS THEY HIT

1300
00:46:09,996 --> 00:46:11,765
THIS MAXIMUM GROWTH AT MUCH

1301
00:46:11,765 --> 00:46:14,935
EARLIER AGES. WELL BEFORE 30

1302
00:46:14,935 --> 00:46:17,371
MONTHS OF AGE, LIKELY RIGHT

1303
00:46:17,371 --> 00:46:18,972
AROUND 24 MONTHS OF AGE SO OUR

1304
00:46:18,972 --> 00:46:22,609
KIDS WITH CP ARE HITTING THEIR

1305
00:46:22,609 --> 00:46:23,844
GROWTH, THEIR MAKE GROWTH LATER

1306
00:46:23,844 --> 00:46:27,948
THAN TYPICALLY DEVELOPING PEERS 

1307
00:46:27,948 --> 00:46:29,716
LET'S PULL APART THE DATA WE

1308
00:46:29,716 --> 00:46:31,284
LOOK AT AND LOOK AT CHILDREN BY

1309
00:46:31,284 --> 00:46:34,588
PROFILE GROUPS. ON THE LEFT SIDE

1310
00:46:34,588 --> 00:46:35,889
WE HAVE CHILDREN WITH NO SPEECH

1311
00:46:35,889 --> 00:46:37,257
MOTOR IMPAIRMENT AND THIS IS

1312
00:46:37,257 --> 00:46:39,893
THEIR LONGITUDINAL DATA OVER

1313
00:46:39,893 --> 00:46:43,196
TIME. WHAT WE CAN SEE IS THE

1314
00:46:43,196 --> 00:46:43,830
AVERAGE INTELLIGIBILITY AT EIGHT

1315
00:46:43,830 --> 00:46:45,732
YEARS OF AGE IS 82% FOR THESE

1316
00:46:45,732 --> 00:46:47,434
KIDS WHO DON'T HAVE ANY EVIDENCE

1317
00:46:47,434 --> 00:46:49,503
OF SPEECH MOTOR IMPAIRMENT. WE

1318
00:46:49,503 --> 00:46:51,238
HAVE ALSO CONDUCTED A PARALLEL

1319
00:46:51,238 --> 00:46:53,039
STUDY ON TYPICALLY DEVELOPING

1320
00:46:53,039 --> 00:46:54,141
CHILDREN AND NOT SHOWING YOU

1321
00:46:54,141 --> 00:46:57,944
THOSE DATA TODAY. BUT WHAT WE

1322
00:46:57,944 --> 00:47:00,347
FIND IS THAT TYPICALLY

1323
00:47:00,347 --> 00:47:01,581
DEVELOPING CHILDREN HIT THIS

1324
00:47:01,581 --> 00:47:03,250
THRESHOLD AT 8 YEARS OF AGE,

1325
00:47:03,250 --> 00:47:08,488
THEY ARE 92% ELIGIBLE AT 8. THE

1326
00:47:08,488 --> 00:47:10,624
HITS, 50% INTELLIGIBILITY

1327
00:47:10,624 --> 00:47:11,825
THRESHOLD AT 40 MONTHS, CHILDREN

1328
00:47:11,825 --> 00:47:14,761
WITHOUT SPEECH MOTOR IMPAIRMENT

1329
00:47:14,761 --> 00:47:16,129
WHEREAS TYPICAL CHILDREN HIT AT

1330
00:47:16,129 --> 00:47:17,564
30 MONTHS. WE HAVE SEEN DELAYS

1331
00:47:17,564 --> 00:47:19,433
BUT THOSE KIDS LOOK GOOD WHO

1332
00:47:19,433 --> 00:47:20,567
DON'T HAVE SPEECH MOTOR

1333
00:47:20,567 --> 00:47:22,002
IMPAIRMENT. THOSE WHO HAVE

1334
00:47:22,002 --> 00:47:25,205
SPEECH MOTOR IMPAIRMENT WITH

1335
00:47:25,205 --> 00:47:26,807
TYPICAL LANGUAGE COMPREHENSION

1336
00:47:26,807 --> 00:47:28,341
ARE STRUGGLING MORE. . SO THERE

1337
00:47:28,341 --> 00:47:31,878
IS A LOT OF VARIABILITY AMONG

1338
00:47:31,878 --> 00:47:33,280
THESE CHILDREN. THEY ARE ONLY

1339
00:47:33,280 --> 00:47:36,183
REACHING ABOUT 71%

1340
00:47:36,183 --> 00:47:36,817
INTELLIGIBILITY BY EIGHT YEARS

1341
00:47:36,817 --> 00:47:39,619
AS A GROUP. THEY ARE 50%

1342
00:47:39,619 --> 00:47:40,654
INTELLIGIBILITY THRESHOLD IS

1343
00:47:40,654 --> 00:47:42,522
COMING QUITE A BIT LATER AT 55

1344
00:47:42,522 --> 00:47:46,927
MONTHS. FINALLY THOSE CHILDREN

1345
00:47:46,927 --> 00:47:47,761
WITH MORE IMPAIRMENT AND

1346
00:47:47,761 --> 00:47:48,428
LANGUAGE COMPREHENSION

1347
00:47:48,428 --> 00:47:50,864
INVOLVEMENT AS WELL AS SPEECH

1348
00:47:50,864 --> 00:47:53,099
MOTOR IMPAIRMENT ARE ONLY

1349
00:47:53,099 --> 00:47:55,769
REACHING INTELLIGIBILITY OF

1350
00:47:55,769 --> 00:47:57,737
ABOUT 42% BY EIGHT YEARS OF AGE

1351
00:47:57,737 --> 00:47:59,473
AND MOST OF THESE CHILDREN ARE

1352
00:47:59,473 --> 00:48:02,209
NEVER REACHING 50%

1353
00:48:02,209 --> 00:48:03,643
INTELLIGIBILITY. SO IF YOU HAVE

1354
00:48:03,643 --> 00:48:05,879
A CHILD WITH SPEECH MOTOR

1355
00:48:05,879 --> 00:48:08,315
IMPAIRMENT AND LANGUAGE

1356
00:48:08,315 --> 00:48:10,383
COMPREHENSION IMPAIRMENT OR

1357
00:48:10,383 --> 00:48:11,151
INTELLECTUAL DISABILITY IN MANY

1358
00:48:11,151 --> 00:48:13,019
CASES THE PROGNOSIS IS NOT

1359
00:48:13,019 --> 00:48:14,654
LOOKING GREAT FOR FUNCTIONAL

1360
00:48:14,654 --> 00:48:18,225
SPEECH DEVELOPMENT. WHAT WE KNOW

1361
00:48:18,225 --> 00:48:20,227
FROM THIS WORK IS

1362
00:48:20,227 --> 00:48:21,862
INTELLIGIBILITY AT THREE IS

1363
00:48:21,862 --> 00:48:23,363
HIGHLY PREDICTIVE OF

1364
00:48:23,363 --> 00:48:24,097
INTELLIGIBILITY AT EIGHT YEARS

1365
00:48:24,097 --> 00:48:25,732
OF AGE SO WHEN WE POOL ALL

1366
00:48:25,732 --> 00:48:30,871
CHILDREN WITH CP WE CAN SEE

1367
00:48:30,871 --> 00:48:32,772
PREDICTION WITH R SQUARE VALUE

1368
00:48:32,772 --> 00:48:34,307
OF .78. THAT IS REALLY GOOD. 

1369
00:48:34,307 --> 00:48:36,810
WHEN WE SEPARATE INTO PROFILE

1370
00:48:36,810 --> 00:48:38,278
GROUPS TO FURTHER REFINE

1371
00:48:38,278 --> 00:48:40,480
PREDICTIONS AND ADD THE PROFILE

1372
00:48:40,480 --> 00:48:42,816
GROUP TO PREDICTION MODEL WHAT

1373
00:48:42,816 --> 00:48:45,652
WE SEE IS THAT CHILDREN,

1374
00:48:45,652 --> 00:48:48,989
PREDICTION MODEL IS IMPROVED AND

1375
00:48:48,989 --> 00:48:50,690
THREE-YEAR-OLD DATA PREDICT WITH

1376
00:48:50,690 --> 00:48:55,228
84%.  ACCURACY, HOW WELL

1377
00:48:55,228 --> 00:48:57,898
CHILDREN WILL BE PERFORMING IN

1378
00:48:57,898 --> 00:48:59,566
TERMS OF INTELLIGIBILITY AT

1379
00:48:59,566 --> 00:49:00,700
EIGHT YEARS OF AGE SO PROFILE

1380
00:49:00,700 --> 00:49:01,801
GROUP MEMBERSHIP IMPROVES

1381
00:49:01,801 --> 00:49:04,371
PREDICTION. SO OUR NEXT QUESTION

1382
00:49:04,371 --> 00:49:07,374
IS HOW WELL DOES SPEECH

1383
00:49:07,374 --> 00:49:07,874
INTELLIGIBILITY MEASURES

1384
00:49:07,874 --> 00:49:08,541
DIFFERENTIATE AMONG GROUPS OF

1385
00:49:08,541 --> 00:49:11,645
CHILDREN WITH CP. SO WHAT YOU

1386
00:49:11,645 --> 00:49:16,049
CAN SEE HERE THESE ARE GROWTH

1387
00:49:16,049 --> 00:49:17,984
CURVES AND DISTRIBUTION SPEECH

1388
00:49:17,984 --> 00:49:18,685
INTELLIGIBILITY OF FIRST

1389
00:49:18,685 --> 00:49:19,419
TYPICALLY DEVELOPING FOLLOWED BY

1390
00:49:19,419 --> 00:49:22,222
DATA THAT I JUST SHOWED YOU ON

1391
00:49:22,222 --> 00:49:24,157
CHILDREN WITH CP. WHERE WE HAVE

1392
00:49:24,157 --> 00:49:25,091
THE CHILDREN WITHOUT SPEECH

1393
00:49:25,091 --> 00:49:29,663
MOTOR IMPAIRMENT IN THE MIDDLE.

1394
00:49:29,663 --> 00:49:32,632
AND CHILDREN WHO DO HAVE SPEECH

1395
00:49:32,632 --> 00:49:34,234
MOTOR IMPAIRMENT IN CHILDREN

1396
00:49:34,234 --> 00:49:35,669
WITH LANGUAGE IMPAIRMENT INTO

1397
00:49:35,669 --> 00:49:38,271
ONE GROUP TO SHOW YOU THESE

1398
00:49:38,271 --> 00:49:40,473
DISTRIBUTIONS. THESE ARE

1399
00:49:40,473 --> 00:49:42,175
PERCENTILES ON THE VERY BOTTOM,

1400
00:49:42,175 --> 00:49:44,544
YOU SEE THE FIFTH PERCENTILE AND

1401
00:49:44,544 --> 00:49:46,346
GREEN DOTTED LINE IS 50TH

1402
00:49:46,346 --> 00:49:49,883
PERCENTILE. SO WE LOOKED AT ROC

1403
00:49:49,883 --> 00:49:52,319
CURVES AND WE ARE INTERESTED IN

1404
00:49:52,319 --> 00:49:54,921
THE QUESTION OF HOW DIFFERENT

1405
00:49:54,921 --> 00:49:57,190
OUR CHILDREN NO SPEECH MOTOR

1406
00:49:57,190 --> 00:49:59,159
IMPAIRMENT ARE FROM CHILDREN WHO

1407
00:49:59,159 --> 00:50:00,827
HAVE TYPICAL DEVELOPMENT AND NO

1408
00:50:00,827 --> 00:50:02,796
DIAGNOSIS OF CP. WHAT WE

1409
00:50:02,796 --> 00:50:04,364
ESSENTIALLY FOUND WHEN WE LOOK

1410
00:50:04,364 --> 00:50:05,966
AT VERY BOTTOM OF TYPICAL

1411
00:50:05,966 --> 00:50:07,767
DEVELOPMENT AND THE VERY BOTTOM

1412
00:50:07,767 --> 00:50:10,437
OF CHILDREN WITH NO SPEECH MOTOR

1413
00:50:10,437 --> 00:50:11,705
IMPAIRMENT, THE 10TH PERCENTILE

1414
00:50:11,705 --> 00:50:14,074
OF EACH. THESE CHILDREN ARE

1415
00:50:14,074 --> 00:50:16,476
QUITE SIMILAR. SO THERE IS ABOUT

1416
00:50:16,476 --> 00:50:18,144
SIX MONTH LAG IN TERMS OF

1417
00:50:18,144 --> 00:50:18,878
INTELLIGIBILITY DEVELOPMENT FOR

1418
00:50:18,878 --> 00:50:21,014
THE CHILDREN WITH CP. UP THROUGH

1419
00:50:21,014 --> 00:50:22,482
EIGHT YEARS OF AGE BUT YOU CAN

1420
00:50:22,482 --> 00:50:24,250
SEE THAT THE DISTANCE IS GETTING

1421
00:50:24,250 --> 00:50:25,785
A LITTLE BIT SMALLER WITH TIME

1422
00:50:25,785 --> 00:50:29,222
SO WE DO NEED MORE DEVELOPMENTAL

1423
00:50:29,222 --> 00:50:31,958
DATA BEYOND AGE 8 TO FURTHER

1424
00:50:31,958 --> 00:50:33,660
UNDERSTAND HOW OUR CHILDREN WITH

1425
00:50:33,660 --> 00:50:37,330
NO SPEECH MOTOR IMPAIRMENT MAY

1426
00:50:37,330 --> 00:50:39,265
NORMALIZE. WHEN WE LOOK AT HOW

1427
00:50:39,265 --> 00:50:41,368
CHILDREN WITH NO SPEECH MOTOR

1428
00:50:41,368 --> 00:50:42,836
IMPAIRMENT HERE ON THE LEFT SIDE

1429
00:50:42,836 --> 00:50:44,671
COMPARE WITH CHILDREN WHO HAVE

1430
00:50:44,671 --> 00:50:47,374
SPEECH MOTOR IMPAIRMENT RELATIVE

1431
00:50:47,374 --> 00:50:50,010
TO EARLY DIFFERENTIATION JUICING

1432
00:50:50,010 --> 00:50:52,612
ROC CURVES WHAT WE SEE IS THAT

1433
00:50:52,612 --> 00:50:55,448
THESE DENSITY ROC CURVES SHOW US

1434
00:50:55,448 --> 00:50:58,818
THERE IS VERY STRONG

1435
00:50:58,818 --> 00:51:00,620
DIFFERENTIATION, BETWEEN THE TWO

1436
00:51:00,620 --> 00:51:01,955
GROUPS OF CHILDREN. SO IF ALL WE

1437
00:51:01,955 --> 00:51:03,590
KNOW IS A CHILD HAS A DIAGNOSIS

1438
00:51:03,590 --> 00:51:06,960
OF CP, WE CAN TAKE THEIR SPEECH

1439
00:51:06,960 --> 00:51:07,560
INTELLIGIBILITY SCORES AND BE

1440
00:51:07,560 --> 00:51:10,497
ABLE TO DIFFERENTIATE THEM BASED

1441
00:51:10,497 --> 00:51:11,965
ON THESE INTELLIGIBILITY SCORES

1442
00:51:11,965 --> 00:51:14,067
INTO THOSE WITH SPEECH MOTOR

1443
00:51:14,067 --> 00:51:15,135
IMPAIRMENT AND THOSE WITHOUT

1444
00:51:15,135 --> 00:51:16,703
SPEECH MOTOR IMPAIRMENT. THAT'S

1445
00:51:16,703 --> 00:51:18,772
VERY, VERY POWERFUL FOR

1446
00:51:18,772 --> 00:51:20,473
INTERVENTION. THIS

1447
00:51:20,473 --> 00:51:21,975
DIFFERENTIATION GETS BETTER AT

1448
00:51:21,975 --> 00:51:23,877
FOUR YEARS OF AGE WITH AREA

1449
00:51:23,877 --> 00:51:25,979
UNDER THE CURVE OF .94 BUT IT IS

1450
00:51:25,979 --> 00:51:27,380
VERY GOOD AT THREE YEARS OF AGE

1451
00:51:27,380 --> 00:51:29,149
SO THIS IS VERY POWERFUL FOR

1452
00:51:29,149 --> 00:51:30,650
INTERVENTION FOR THESE CHILDREN 

1453
00:51:30,650 --> 00:51:33,253
WHAT WE KNOW ABOUT

1454
00:51:33,253 --> 00:51:34,187
INTELLIGIBILITY THRESHOLDS IN

1455
00:51:34,187 --> 00:51:36,222
TERMS OF DIFFERENTIATING

1456
00:51:36,222 --> 00:51:37,690
CHILDREN WITH CP WITH SPEECH

1457
00:51:37,690 --> 00:51:39,526
MOTOR IMPAIRMENT FROM THOSE

1458
00:51:39,526 --> 00:51:41,161
WITHOUT SPEECH MOTOR IMPAIRMENT

1459
00:51:41,161 --> 00:51:43,430
IS WE CAN CORRECTLY DETECT 90%

1460
00:51:43,430 --> 00:51:45,698
OF CHILDREN WITH DISARTHEROIA OR

1461
00:51:45,698 --> 00:51:47,400
SPEECH MOTOR IMPAIRMENT USING

1462
00:51:47,400 --> 00:51:51,771
THE FOLLOWING CUT POINTS. IF

1463
00:51:51,771 --> 00:51:52,972
YOUR INTELLIGIBILITY IS LOWER

1464
00:51:52,972 --> 00:51:54,274
THAN 39 PERCENT AT THREE YEARS

1465
00:51:54,274 --> 00:51:59,279
OF AGE YOU HAVE ABOUT 80 TO 90%

1466
00:51:59,279 --> 00:52:02,115
CHANCE OF DISARTHEROIAIA. IF

1467
00:52:02,115 --> 00:52:04,784
INTELLIGIBILITY IS LOWER THAN

1468
00:52:04,784 --> 00:52:09,622
59% AT 4 YEARS, 80 TO 90%

1469
00:52:09,622 --> 00:52:10,890
DISARTHEROIA. 76% OR LOWER AT

1470
00:52:10,890 --> 00:52:13,560
FIVE YEARS OF AGE, 87% OR LOWER

1471
00:52:13,560 --> 00:52:15,862
AT SIX YEARS OF AGE, ALL THESE

1472
00:52:15,862 --> 00:52:17,263
THRESHOLDS TELL US THAT A CHILD

1473
00:52:17,263 --> 00:52:20,867
HAS AN 80 TO 90% CHANCE OF

1474
00:52:20,867 --> 00:52:22,335
HAVING DISAIRILYIA. THIS BECOMES

1475
00:52:22,335 --> 00:52:24,571
EASY TO DIFFERENTIATE ONCE

1476
00:52:24,571 --> 00:52:26,606
CHILDREN ARE OLDER, I WOULD SAY

1477
00:52:26,606 --> 00:52:28,241
ABOVE FOUR AND A HALF YEARS OF

1478
00:52:28,241 --> 00:52:30,643
AGE. BUT THIS THRESHOLD FOR

1479
00:52:30,643 --> 00:52:31,644
YOUNGER CHILDREN IS VERY

1480
00:52:31,644 --> 00:52:33,079
IMPORTANT FOR BEGINNING TO GET

1481
00:52:33,079 --> 00:52:35,482
TO EARLY IDENTIFICATION OF

1482
00:52:35,482 --> 00:52:36,483
SPEECH MOTOR IMPAIRMENT AND

1483
00:52:36,483 --> 00:52:38,985
SEPARATING TYPICAL DEVELOPMENT

1484
00:52:38,985 --> 00:52:42,822
FROM ATYPICAL DEVELOPMENT. SO WE

1485
00:52:42,822 --> 00:52:43,890
HAVE LEARNED SOME THINGS ABOUT

1486
00:52:43,890 --> 00:52:44,891
SPEECH DEVELOPMENT IN CHILDREN

1487
00:52:44,891 --> 00:52:47,093
WITH CP, WE KNOW THAT THERE IS A

1488
00:52:47,093 --> 00:52:48,962
WIDE RANGE OF VARIABILITY IN

1489
00:52:48,962 --> 00:52:50,830
SPEECH GROWTH AND THAT GROWTH

1490
00:52:50,830 --> 00:52:53,032
PROFILES OF CHILDREN WITH CP

1491
00:52:53,032 --> 00:52:54,601
ABSOLUTELY VARY BASED ON THEIR

1492
00:52:54,601 --> 00:52:58,471
PROFILE GROUP MEMBERSHIP. AGO

1493
00:52:58,471 --> 00:52:59,506
YEAR OUTCOMES FOR CHILDREN WITH

1494
00:52:59,506 --> 00:53:01,474
CP ARE LOWER THAN TYPICAL PEERS

1495
00:53:01,474 --> 00:53:03,543
BUT HOW MUCH LOWER DEPENDS WHICH

1496
00:53:03,543 --> 00:53:08,815
GROUP YOU ARE IN. CHILDREN WITH

1497
00:53:08,815 --> 00:53:12,018
CP AS POPULATION ARE GROWING IN

1498
00:53:12,018 --> 00:53:12,619
THEIR SPEECH INTELLIGIBILITY

1499
00:53:12,619 --> 00:53:13,453
BETWEEN THREE YEARS OF AGE AND

1500
00:53:13,453 --> 00:53:21,127
FIVE YEARS OF AGE. EARLY SPEECH

1501
00:53:21,127 --> 00:53:23,096
OUTCOMES ARE PREDICTIVE OF

1502
00:53:23,096 --> 00:53:26,566
OUTCOME. SO CHILDREN WHO REACH

1503
00:53:26,566 --> 00:53:28,034
INTELLIGIBILITY EARLIER HAVE

1504
00:53:28,034 --> 00:53:30,270
HIGHER INTELLIGIBILITY LATER AND

1505
00:53:30,270 --> 00:53:30,904
INTELLIGIBILITY SCORES AT THREE

1506
00:53:30,904 --> 00:53:32,539
YEARS ARE HIGHLY PREDICTIVE OF

1507
00:53:32,539 --> 00:53:35,108
EIGHT YEARS H. SPEECH

1508
00:53:35,108 --> 00:53:35,608
INTELLIGIBILITY MEASURES

1509
00:53:35,608 --> 00:53:36,209
DIFFERENTIATE NICELY BETWEEN

1510
00:53:36,209 --> 00:53:37,810
GROUPS OF CHILDREN.  OUR

1511
00:53:37,810 --> 00:53:39,712
CHILDREN WITH CP WHO HAVE NO

1512
00:53:39,712 --> 00:53:42,815
SPEECH MOTOR IMPAIRMENT DO LAG

1513
00:53:42,815 --> 00:53:43,883
BEHIND THEIR TYPICALLY

1514
00:53:43,883 --> 00:53:45,585
DEVELOPING PEERS. CHILDREN WITH

1515
00:53:45,585 --> 00:53:49,689
SPEECH MOTOR IMPAIRMENT ARE

1516
00:53:49,689 --> 00:53:50,356
READILY DIFFERENTIATABLE FROM

1517
00:53:50,356 --> 00:53:52,725
THOSE WITHOUT WHO ALSO HAVE A CP

1518
00:53:52,725 --> 00:53:59,933
DIAGNOSIS BY THREE YEARS OF AGE 

1519
00:53:59,933 --> 00:54:01,201
A CUT POINT IF A CHILD WITH

1520
00:54:01,201 --> 00:54:03,770
DIAGNOSIS OF CP HAS

1521
00:54:03,770 --> 00:54:05,805
INTELLIGIBILITY BELOW 3% YEARS

1522
00:54:05,805 --> 00:54:07,340
OF AGE LIKELY THEY WERE SPEECH

1523
00:54:07,340 --> 00:54:08,841
MOTOR IMPAIRMENT AND WE SHOULD

1524
00:54:08,841 --> 00:54:11,644
BE THINKING SERIOUSLY ABOUT

1525
00:54:11,644 --> 00:54:12,178
AUGUST MENTIVETIVE AND

1526
00:54:12,178 --> 00:54:12,879
ALTERNATIVE COMMUNICATION

1527
00:54:12,879 --> 00:54:14,347
INTERVENTIONS FOR THAT CHILD. IF

1528
00:54:14,347 --> 00:54:16,783
A CHILD ISN'T TALKING BY FLEE

1529
00:54:16,783 --> 00:54:18,418
YEARS, SPEECH OUTCOMES ARE

1530
00:54:18,418 --> 00:54:26,726
LIKELY TO BE QUITE PRESTRICTED. 

1531
00:54:26,726 --> 00:54:30,063
THERE'S MANY DETECTIONS

1532
00:54:30,063 --> 00:54:30,563
INCLUDING UNDERSTANDING

1533
00:54:30,563 --> 00:54:31,464
INTELLIGIBILITY DEVELOPMENT,

1534
00:54:31,464 --> 00:54:32,465
FOLLOWING BEYOND THAT AGE POINT

1535
00:54:32,465 --> 00:54:34,267
AND WE ARE WORKING ON PROCESSING

1536
00:54:34,267 --> 00:54:36,069
THAT DATA. EXAMINING TREATMENTS

1537
00:54:36,069 --> 00:54:38,771
FOR IMPROVING INTELLIGIBILITY

1538
00:54:38,771 --> 00:54:40,873
OUTCOMES, AND ALSO LOOKING ON

1539
00:54:40,873 --> 00:54:43,409
THE LOWER END TO UNDERSTAND IF

1540
00:54:43,409 --> 00:54:46,045
PRE-VERBAL INDICATORS OF SPEECH

1541
00:54:46,045 --> 00:54:47,480
IMPAIRMENT GET US TO DIAGNOSIS

1542
00:54:47,480 --> 00:54:50,383
SOONER AND STREAMLINING

1543
00:54:50,383 --> 00:54:52,785
INTERVENTIONS SOONER. BEGINNING

1544
00:54:52,785 --> 00:54:54,654
TO UNDERSTAND OPTIMAL TIMING FOR

1545
00:54:54,654 --> 00:54:56,155
INTERVENTION, WHEN CHILDREN ARE

1546
00:54:56,155 --> 00:54:58,091
PRIMED TO GET THE BIGGEST BOOST

1547
00:54:58,091 --> 00:55:01,761
FROM SPEECH THERAPY. I HAVE

1548
00:55:01,761 --> 00:55:03,496
WONDERFUL COLLABORATORS WHO MADE

1549
00:55:03,496 --> 00:55:05,298
THE WORK POSSIBLE, PARTICULARLY

1550
00:55:05,298 --> 00:55:08,835
PAUL RAT HOUSE INDRIS TAN MAR,

1551
00:55:08,835 --> 00:55:09,836
STATISTICIANS BEHIND THESE

1552
00:55:09,836 --> 00:55:12,372
MODELS AND DOCTORAL STUDENT

1553
00:55:12,372 --> 00:55:15,375
SORIANO AND HELEN LONG AND

1554
00:55:15,375 --> 00:55:19,312
MARIANNA AS WELL AS MANY OTHER

1555
00:55:19,312 --> 00:55:21,147
COLLABORATORS, IN THE WIS LAB

1556
00:55:21,147 --> 00:55:22,282
AND THE WESTON CENTER AND OF

1557
00:55:22,282 --> 00:55:23,950
COURSE WE THANK THE CHILDREN AND

1558
00:55:23,950 --> 00:55:24,984
FAMILIES WHO PARTICIPATED IN

1559
00:55:24,984 --> 00:55:27,353
THIS RESEARCH AS WELL AS TWO

1560
00:55:27,353 --> 00:55:28,821
GRANTS FROM THE NATIONAL

1561
00:55:28,821 --> 00:55:30,790
INSTITUTES OF HEALTH IN THE

1562
00:55:30,790 --> 00:55:32,292
NATIONAL INSTITUTE OF -- ON

1563
00:55:32,292 --> 00:55:33,993
DEAFNESS AND COMMUNICATION

1564
00:55:33,993 --> 00:55:35,561
DISORDERS AND A U 54 GRANT

1565
00:55:35,561 --> 00:55:37,497
AWARDED TO THE WASTEMAN CENTER

1566
00:55:37,497 --> 00:55:39,966
FROM NIDCD. THANK YOU FOR YOUR

1567
00:55:39,966 --> 00:55:44,170
FILE. 

1568
00:55:44,170 --> 00:55:46,806
>> HELLO EVERYONE, MY NAME
IS

1569
00:55:46,806 --> 00:55:48,141
DIANE DAMIANO, I WILL BE TALKING

1570
00:55:48,141 --> 00:55:49,509
TO YOU TODAY ABOUT TECHNOLOGIES

1571
00:55:49,509 --> 00:55:51,711
FOR ASSESSMENT AND FUNCTIONAL

1572
00:55:51,711 --> 00:55:53,179
RESTORATION IN CEREBRAL PALSY. 

1573
00:55:53,179 --> 00:55:55,415
SO AS A BACKGROUND THIS RESEARCH

1574
00:55:55,415 --> 00:55:57,250
IS ALSO FUNDED BY NIH BUT IT IS

1575
00:55:57,250 --> 00:55:58,685
ACTUALLY DONE HERE IN MY

1576
00:55:58,685 --> 00:56:01,955
LABORATORY AT NIH. WHERE WE

1577
00:56:01,955 --> 00:56:03,323
COMBINE BIOMECHANICS

1578
00:56:03,323 --> 00:56:05,992
NEUROSCIENCE AN NEUROENGINEERING

1579
00:56:05,992 --> 00:56:07,493
PRINCIPLES WITH PRY PLAYER GOAL

1580
00:56:07,493 --> 00:56:08,594
IMPROVING MOBILITY IN CHILDREN

1581
00:56:08,594 --> 00:56:12,332
WITH CEREBRAL PALSY. MUCH PRIOR

1582
00:56:12,332 --> 00:56:14,634
RESEARCH PHYSICAL THERAPIST BY

1583
00:56:14,634 --> 00:56:16,302
BACKGROUND HAS BEEN ON MUSCLE

1584
00:56:16,302 --> 00:56:18,237
STRENGTHENING AND ACTIVITY BASED

1585
00:56:18,237 --> 00:56:20,206
TRAINING IN CP BUT MORE RECENT

1586
00:56:20,206 --> 00:56:21,374
WILL I INTERESTED IN DOING

1587
00:56:21,374 --> 00:56:22,475
RESEARCH IN EMERGING

1588
00:56:22,475 --> 00:56:24,077
TECHNOLOGIES SUCH AS MOBILE

1589
00:56:24,077 --> 00:56:26,212
BRAIN IMAGING AND FEEDBACK AND

1590
00:56:26,212 --> 00:56:27,914
REHABILITATION ROBOTICS. THE

1591
00:56:27,914 --> 00:56:30,083
RATIONALE FOR USE OF

1592
00:56:30,083 --> 00:56:32,151
TECHNOLOGIES IN CP IS THAT CP IS

1593
00:56:32,151 --> 00:56:34,354
A GROUP OF MANY DISORDERS FROM

1594
00:56:34,354 --> 00:56:36,189
FROM EARLY BRAIN INSULTS THAT

1595
00:56:36,189 --> 00:56:38,491
VARY IN TYPE LOCATION EXTENT AND

1596
00:56:38,491 --> 00:56:40,259
TIMING OF INJURY. AS YOU KNOW

1597
00:56:40,259 --> 00:56:42,628
THE BRAIN MECHANISMS UNDERLINE

1598
00:56:42,628 --> 00:56:45,331
MOVEMENT DISORDERS IN CP REMAIN

1599
00:56:45,331 --> 00:56:47,200
POORLY UNDERSTOOD DESPITE MRI

1600
00:56:47,200 --> 00:56:48,601
DTI ADVANCES. WE KNOW THE

1601
00:56:48,601 --> 00:56:50,536
TREATMENT OUTCOMES EVEN FROM

1602
00:56:50,536 --> 00:56:52,638
BEST INTERVENTIONS ARE MODEST SO

1603
00:56:52,638 --> 00:56:55,241
WE NEED BETTER INTERVENTIONS AND

1604
00:56:55,241 --> 00:56:57,243
WE BELIEVE TECHNOLOGY CAN

1605
00:56:57,243 --> 00:56:58,544
GREATLY ENHANCE UNDERSTANDING

1606
00:56:58,544 --> 00:57:03,549
AND OUTCOMES.  SO THE TWO BRAIN

1607
00:57:03,549 --> 00:57:05,618
IMAGING TECHNOLOGIES TALKING

1608
00:57:05,618 --> 00:57:07,620
ABOUT ARE ELECTROENCEPHALOGRAPHY

1609
00:57:07,620 --> 00:57:11,958
AND EEG AND FUNCTIONAL

1610
00:57:11,958 --> 00:57:13,726
SPECTROSCOPY. THESE ARE PART OF

1611
00:57:13,726 --> 00:57:15,128
NEW FIELD CALLED MOBILE BRAIN

1612
00:57:15,128 --> 00:57:18,064
BODY IMAGING MEASURING THE BRAIN

1613
00:57:18,064 --> 00:57:21,167
AND BODY AND SECOND EEG IS

1614
00:57:21,167 --> 00:57:24,670
OLDEST, FUNCTIONAL IMMANAGING

1615
00:57:24,670 --> 00:57:25,471
TECHNIQUE, AND THE IMPORTANCE IS

1616
00:57:25,471 --> 00:57:30,943
WE HAVE FOUND 50% OF THOSE WITH

1617
00:57:30,943 --> 00:57:32,945
CP CANNOT DO F -- MANY CHILDREN

1618
00:57:32,945 --> 00:57:35,681
CAN'T BE STUDIED.  ALSO THE MRI

1619
00:57:35,681 --> 00:57:37,717
YOU CAN ONLY DO SIMPLE MOVEMENTS

1620
00:57:37,717 --> 00:57:40,586
AND THESE TECHNOLOGIES ALLOW THE

1621
00:57:40,586 --> 00:57:43,890
STUDY OF WHOLE BODY MOVEMENTS IN

1622
00:57:43,890 --> 00:57:46,259
NATURALISTIC BUT EACH HAS ITS

1623
00:57:46,259 --> 00:57:49,429
OWN UNIQUE STRENGTH AND

1624
00:57:49,429 --> 00:57:50,730
WEAKNESSES, THIS PICTURE SHOWS

1625
00:57:50,730 --> 00:57:54,500
SOMEONE ON TREADMILL WITH

1626
00:57:54,500 --> 00:57:57,570
NEAREST DATA ENTERLAP. IF YOU

1627
00:57:57,570 --> 00:57:59,739
COMPARE EEG THEY STACK UP WELL

1628
00:57:59,739 --> 00:58:02,208
AS FAR AS FACIAL AND TEMPORAL

1629
00:58:02,208 --> 00:58:04,210
RESOLUTION. THEY CERTAINLY DON'T

1630
00:58:04,210 --> 00:58:06,179
HOLD UP AS WELL AS IMPLANTED

1631
00:58:06,179 --> 00:58:09,649
ELECTRODES BUT COMPARE TO FMRI

1632
00:58:09,649 --> 00:58:12,618
THEY DO WELL WITH EEG HAVING

1633
00:58:12,618 --> 00:58:14,020
EXQUISITE TEMPORAL RESOLUTION. 

1634
00:58:14,020 --> 00:58:15,221
WHAT IS F MERE?

1635
00:58:15,221 --> 00:58:17,990
IT IS LASER LIKE SHOWN THROUGH

1636
00:58:17,990 --> 00:58:19,425
SCAFFOLD SEEN IN THIS MODEL HERE

1637
00:58:19,425 --> 00:58:21,627
WE MADE IN OUR LAB. AND THEN

1638
00:58:21,627 --> 00:58:24,831
RECEIVED BY DETECTORS, AND MOST

1639
00:58:24,831 --> 00:58:26,899
PEOPLE ONLY LEADS TO CORTICAL

1640
00:58:26,899 --> 00:58:28,901
CIRCUS THAT FOR EXAMPLE SMALLER

1641
00:58:28,901 --> 00:58:31,037
HEADS OR THINNER SCALPS LIKE

1642
00:58:31,037 --> 00:58:32,171
BABIES YOU CAN GO DEEPER. THIS

1643
00:58:32,171 --> 00:58:33,673
IS POSSIBLE BECAUSE THERE IS

1644
00:58:33,673 --> 00:58:35,608
OPTICAL WINDOW FROM SCAN TISSUE

1645
00:58:35,608 --> 00:58:38,377
AND BONE ARE TRANSPARENT IN

1646
00:58:38,377 --> 00:58:39,979
INFRARED LIGHT.  THIS IS A

1647
00:58:39,979 --> 00:58:43,583
SPECTRUM WE USE IN MERES WHILE

1648
00:58:43,583 --> 00:58:46,786
HEMOGLOBIN AND DEOXIHEMOGLOBIN

1649
00:58:46,786 --> 00:58:47,653
ARE ABSORBERS DIFFERENT

1650
00:58:47,653 --> 00:58:48,454
WAVELENGTH SO WE CAN DISTINGUISH

1651
00:58:48,454 --> 00:58:54,327
THE TWO. OPTICAL INTENSITY IS

1652
00:58:54,327 --> 00:58:55,895
COMPARED TO HEMOGLOBIN

1653
00:58:55,895 --> 00:58:57,363
CONCENTRATION. THE GOOD THING

1654
00:58:57,363 --> 00:59:00,132
ABOUT MERES FOR FMRIS BASED ON

1655
00:59:00,132 --> 00:59:01,801
THE SAME PRINCIPLE AS

1656
00:59:01,801 --> 00:59:03,169
NEUROVASCULAR COUPLING WITH A

1657
00:59:03,169 --> 00:59:04,971
BOLD RESPONSE AND THE SIGNAL OR

1658
00:59:04,971 --> 00:59:07,073
THE HBO ABSORPTION IS MORE

1659
00:59:07,073 --> 00:59:09,275
INTENSE WHEN BRAIN IS ACTIVATED 

1660
00:59:09,275 --> 00:59:11,277
YOU CAN SO E THIS IS THE PATH

1661
00:59:11,277 --> 00:59:12,979
THAT THAT LIGHT WILL TAKE CALLED

1662
00:59:12,979 --> 00:59:15,548
A BANANA SHAPE PATH THAT GOES

1663
00:59:15,548 --> 00:59:17,583
WITH CORTICAL SURFACE. WE USE A

1664
00:59:17,583 --> 00:59:19,986
SYSTEM CALLED THE INTERNATIONAL

1665
00:59:19,986 --> 00:59:22,455
1020 SYSTEM SHOWN ON THE LEFT,

1666
00:59:22,455 --> 00:59:24,824
BOTH EEG AND MERE MS. BASED ON

1667
00:59:24,824 --> 00:59:26,692
ANATOMIC LAND MARKS WHERE YOU

1668
00:59:26,692 --> 00:59:27,860
PLACE THE CAP CENTER ON TOP OF

1669
00:59:27,860 --> 00:59:30,830
THE HEAD.  THIS IS WHAT WE USE

1670
00:59:30,830 --> 00:59:32,732
FOR F MERE IT IS HOLD HEAD OR

1671
00:59:32,732 --> 00:59:36,369
EEG.  IF YOU ARE LOOKING AT ONE

1672
00:59:36,369 --> 00:59:38,070
SOURCE WHAT YOU WOULD SEE DURING

1673
00:59:38,070 --> 00:59:40,573
TASK IS PICTURE ON THE RIGHT

1674
00:59:40,573 --> 00:59:42,308
WHERE THIS IS THE SHADED PART

1675
00:59:42,308 --> 00:59:43,809
WHERE THE TASK IS OCCURRING

1676
00:59:43,809 --> 00:59:45,378
WITHIN A SECOND OR TWO AFTER THE

1677
00:59:45,378 --> 00:59:48,848
TASK START YOU SEE INCREASE IN

1678
00:59:48,848 --> 00:59:50,016
HEMOGLOBIN SHOWN IN RED,

1679
00:59:50,016 --> 00:59:53,185
DECREASE IN DEOXIHEMOGLOBIN AND

1680
00:59:53,185 --> 00:59:56,355
ADD THESE TWO YOU GET IN THE

1681
00:59:56,355 --> 00:59:58,190
GREEN TOTAL HEMOGLOBIN. AS

1682
00:59:58,190 --> 00:59:59,325
THINGS ARE MORE SOPHISTICATED

1683
00:59:59,325 --> 01:00:03,129
OVER THE YEARS YOU CAN GET NICE

1684
01:00:03,129 --> 01:00:04,463
RESOLUTION MAPS AND WHERE THEY

1685
01:00:04,463 --> 01:00:05,865
ARE LOCATED ON THE CORTICAL

1686
01:00:05,865 --> 01:00:07,500
SURFACE. SO JUST TO SHOW YOU ONE

1687
01:00:07,500 --> 01:00:10,536
OF OUR EXPERIENCE --

1688
01:00:10,536 --> 01:00:12,205
EXPERIMENTS, THIS IS LOOKING AT

1689
01:00:12,205 --> 01:00:14,340
DORSAL FLEXION AND THE PERSON

1690
01:00:14,340 --> 01:00:19,278
HERE WITH ANKLE EXTENDED SO YOU

1691
01:00:19,278 --> 01:00:21,480
CAN SEE THIS HANDICAP ON THEIR

1692
01:00:21,480 --> 01:00:22,615
HEAD, THE REASON FOR THAT IS WE

1693
01:00:22,615 --> 01:00:26,319
HAVE INFRARED CAMERAS IN OUR LAB

1694
01:00:26,319 --> 01:00:27,820
AND THESE INTERFERE WITH MERES

1695
01:00:27,820 --> 01:00:30,089
SO WE HAVE TO COVER THE ED HEAD 

1696
01:00:30,089 --> 01:00:31,857
WE USE A BLOCK DESIGN AND HERE

1697
01:00:31,857 --> 01:00:35,027
THIS PERSON WOULD BE DOING EIGHT

1698
01:00:35,027 --> 01:00:38,331
WALKS AT ONE HERTZ PACE SO THEY

1699
01:00:38,331 --> 01:00:41,133
20 SECONDS MOVE REPETITIVELY

1700
01:00:41,133 --> 01:00:42,635
THEN REST FOR VARIABLE REST

1701
01:00:42,635 --> 01:00:46,505
PERIOD SO THEY DO NOT ANTICIPATE

1702
01:00:46,505 --> 01:00:48,941
THE NEXT BLOCK. THIS SHOWS OUR

1703
01:00:48,941 --> 01:00:52,345
RED LIGHTS ARE THE LIGHT

1704
01:00:52,345 --> 01:00:54,313
SOURCES, DETECTORS, THIS IS OUR

1705
01:00:54,313 --> 01:00:56,716
PROBE DESIGN AND THIS IS HOW IT

1706
01:00:56,716 --> 01:00:58,184
LOOKS PLACED ON THE HEAD. SO

1707
01:00:58,184 --> 01:00:59,885
THESE ARE DATA THAT WE COLLECTED

1708
01:00:59,885 --> 01:01:02,521
IN GROUP WITH CHILDREN WITH

1709
01:01:02,521 --> 01:01:04,123
CEREBRAL PALSY BY (INAUDIBLE)

1710
01:01:04,123 --> 01:01:06,525
POST DOC IN MY LAB. THIS IS

1711
01:01:06,525 --> 01:01:07,994
LOOKING AT DORSAL FLEXION IN

1712
01:01:07,994 --> 01:01:09,295
CHILDREN WITH AND WITHOUT

1713
01:01:09,295 --> 01:01:11,230
BILATERAL CP. WHAT YOU SEE HERE,

1714
01:01:11,230 --> 01:01:15,101
WE ARE LOOKING AT LEFT

1715
01:01:15,101 --> 01:01:16,902
DORSOFLEXION SO YOU ACT VISION

1716
01:01:16,902 --> 01:01:18,838
ON RIGHT SIDE SHOWN HERE, RED

1717
01:01:18,838 --> 01:01:21,040
WOULD BE SIGNIFICANT ACTIVATION,

1718
01:01:21,040 --> 01:01:22,508
BLUE WOULD BE SIGNIFICANT

1719
01:01:22,508 --> 01:01:25,811
INHIBITION.  WITH WE ARE

1720
01:01:25,811 --> 01:01:26,946
STARTING CHILDREN WITH TYPICAL

1721
01:01:26,946 --> 01:01:28,180
DEVELOPMENT ON FAR LEFT. WHAT

1722
01:01:28,180 --> 01:01:29,582
YOU CAN SEE HERE YOU DON'T SEE

1723
01:01:29,582 --> 01:01:30,916
ANYTHING ON THE RIGHT BUT YOU

1724
01:01:30,916 --> 01:01:33,185
SEE SOME INHIBITION ON THE

1725
01:01:33,185 --> 01:01:34,720
OPPOSITE SIDE. AND WHAT WE ARE

1726
01:01:34,720 --> 01:01:37,356
SEEING IN A LOT OF HEALTHY

1727
01:01:37,356 --> 01:01:40,726
INDIVIDUALS IS A LOT MORE

1728
01:01:40,726 --> 01:01:43,062
INHIBITION FOR MORE SIGNAL. IF

1729
01:01:43,062 --> 01:01:45,998
YOU LOOK AT CHILDREN WITH CP AND

1730
01:01:45,998 --> 01:01:47,967
GF -- YOU SEE SOMEK ACTIVATION

1731
01:01:47,967 --> 01:01:51,037
ON THE RIGHT SIDE OF THE BRAIN,

1732
01:01:51,037 --> 01:01:53,305
BOTH SIMILAR. BUT CHANGES

1733
01:01:53,305 --> 01:01:56,542
DRAMATICALLY WHEN YOU GET GMSCS

1734
01:01:56,542 --> 01:01:57,810
LEVEL 3 YOU SEE NOT JUST

1735
01:01:57,810 --> 01:01:58,944
ACTIVATION ON THE RIGHT BUT

1736
01:01:58,944 --> 01:02:01,747
ACTIVATION IN THE WHOLE SENSORY

1737
01:02:01,747 --> 01:02:03,649
MOTOR AREA, AT A VERY HIGH LEVEL

1738
01:02:03,649 --> 01:02:05,317
DOING THE TASK.  THESE RESULTS

1739
01:02:05,317 --> 01:02:08,554
WE LOOK AT MULTIPLE TESTS IN

1740
01:02:08,554 --> 01:02:09,455
THESE CHILDREN AND SEE SIMILAR

1741
01:02:09,455 --> 01:02:13,526
DATA.  THIS MEANS WHAT WE KNOW

1742
01:02:13,526 --> 01:02:14,860
HERE IS THIS ORGANIZATION IN

1743
01:02:14,860 --> 01:02:18,197
CHILDREN WITH GMFCS 3 IS

1744
01:02:18,197 --> 01:02:22,935
DRAMATICALLY DISTURBED.  WE ALSO

1745
01:02:22,935 --> 01:02:24,904
LOOK AT THE NUMBER OF MUSCLES

1746
01:02:24,904 --> 01:02:26,772
ACTIVE WHEN TRYING TO DO A TASK

1747
01:02:26,772 --> 01:02:28,741
BUT ONLY BE LIMITED MUSCLE SET.

1748
01:02:28,741 --> 01:02:30,376
RIGHT? BUT YOU SEE HERE SOMEONE

1749
01:02:30,376 --> 01:02:33,579
WITH CP TRYING TO DO IT MOVING

1750
01:02:33,579 --> 01:02:34,480
KNEE ON THAT SIDE AND OTHER

1751
01:02:34,480 --> 01:02:38,517
SIDE.  WE CORRELATED THAT WITH

1752
01:02:38,517 --> 01:02:39,919
IN GRAY F NEARS CHANNEL, WHAT

1753
01:02:39,919 --> 01:02:41,587
YOU CAN SEE HERE IS THE NUMBER

1754
01:02:41,587 --> 01:02:44,990
OF MUSCLES CORRELATES WITH

1755
01:02:44,990 --> 01:02:47,226
NUMBER OF CHANNELS ACTIVE AS YOU

1756
01:02:47,226 --> 01:02:50,730
GO UP GMFCS LEVEL. THIS SHOWS

1757
01:02:50,730 --> 01:02:51,997
MUSCLE EFFORT IS RELATED TO

1758
01:02:51,997 --> 01:02:54,567
BRAIN EFFORT AND FUNCTION. 

1759
01:02:54,567 --> 01:02:57,670
SWITCHING TO EEG, LOOKING AT

1760
01:02:57,670 --> 01:02:59,939
ELECTRICAL CHEMICAL ACTIVITY, IT

1761
01:02:59,939 --> 01:03:01,307
IT HAS TO HAVE TENS OF THOUSANDS

1762
01:03:01,307 --> 01:03:03,342
OF NEURONS AT SURFACE OF SCALP

1763
01:03:03,342 --> 01:03:05,911
TO SHOW ACTIVITY.  WHAT WE THINK

1764
01:03:05,911 --> 01:03:10,449
IS THESE ORIGINATE ELECTRICAL

1765
01:03:10,449 --> 01:03:11,550
ACTIVITY DENDRITES IN THE CORTEX

1766
01:03:11,550 --> 01:03:15,421
AND AS I SAID HAS SKI EXQUISITE

1767
01:03:15,421 --> 01:03:17,890
TEMPORAL RESOLUTION. SO LOOK FOR

1768
01:03:17,890 --> 01:03:19,925
SPATIAL RESOLUTION. THESE ARE

1769
01:03:19,925 --> 01:03:22,995
VERY NOISY SIGNALS. SO WE REALLY

1770
01:03:22,995 --> 01:03:24,463
NEED MANY TRIALS OR SUBJECTS TO

1771
01:03:24,463 --> 01:03:26,265
EXTRACT WHAT WE ARE LOOKING AT

1772
01:03:26,265 --> 01:03:28,100
AS A VENT RELATED POTENTIAL

1773
01:03:28,100 --> 01:03:30,770
ERPs. SO THIS IS A CHILD THAT

1774
01:03:30,770 --> 01:03:32,705
HAS OF THAT HAS EEG TAG LINE

1775
01:03:32,705 --> 01:03:34,740
WHAT YOU SEE HERE IS SEIZURE

1776
01:03:34,740 --> 01:03:35,941
ACTIVITY WHICH IS EASILY

1777
01:03:35,941 --> 01:03:38,644
DISTINGUISHABLE FOR EEG BUT

1778
01:03:38,644 --> 01:03:40,579
THESE ARE DATA WAY SEE DURING

1779
01:03:40,579 --> 01:03:44,150
THE TASK AND YOU CAN APPRECIATE.

1780
01:03:44,150 --> 01:03:46,452
THE INTERESTING THING ABOUT EEG

1781
01:03:46,452 --> 01:03:47,820
IS IT RECORDS ACTIVITY IN

1782
01:03:47,820 --> 01:03:51,257
DIFFERENT FREQUENCIES EACH

1783
01:03:51,257 --> 01:03:52,258
FREQUENCY BAND MEANS SOMETHING

1784
01:03:52,258 --> 01:03:53,359
DIFFERENT. THE BRAIN IS

1785
01:03:53,359 --> 01:03:55,895
OSCILLATING IN ALL THESE --

1786
01:03:55,895 --> 01:03:57,763
PEOPLE CALL THIS BRAIN MUSIC

1787
01:03:57,763 --> 01:04:00,132
THAT IS LIKE A SIMILAR PHONY

1788
01:04:00,132 --> 01:04:01,066
THAT TAKE IT IS FREQUENCIES AN

1789
01:04:01,066 --> 01:04:03,302
PUTS THEM TOGETHER INA BEAUTIFUL

1790
01:04:03,302 --> 01:04:05,704
MOVEMENT REPERTOI REPERTOIRE. WE

1791
01:04:05,704 --> 01:04:07,807
KNOW IS AMPLITUDE IS HIGHER AND

1792
01:04:07,807 --> 01:04:09,375
FREQUENCY LOWER. WHEN THE BRAIN

1793
01:04:09,375 --> 01:04:12,978
IS LESS ACTIVE. THESE ARE DELTA

1794
01:04:12,978 --> 01:04:17,216
WAVES LESS THAN 4 HERTZ, SLOW

1795
01:04:17,216 --> 01:04:18,317
WAVE SLEEP DATA WAVE WHENCE YOU

1796
01:04:18,317 --> 01:04:22,822
ARE I WAKE BUT DROWSY. ONE MOST

1797
01:04:22,822 --> 01:04:24,757
INTERESTED IN, OR TWO TWO IS THE

1798
01:04:24,757 --> 01:04:26,659
ALPHA, WHICH IS THE FIRST ONE

1799
01:04:26,659 --> 01:04:28,494
RECOGNIZED AND THE MOTOR REGION

1800
01:04:28,494 --> 01:04:31,297
IT IS CALLED THE MU RHYTHM

1801
01:04:31,297 --> 01:04:34,099
AROUND 8 TO 12 HERTZ. THIS

1802
01:04:34,099 --> 01:04:35,100
INTERESTINGLY WILL DECREASE IF

1803
01:04:35,100 --> 01:04:37,570
YOU GO TO MOVE SO THE BASICALLY

1804
01:04:37,570 --> 01:04:39,705
THAT OSCILLATION BECOMES

1805
01:04:39,705 --> 01:04:41,974
DECOUPLED. THE DATA TENDS TO

1806
01:04:41,974 --> 01:04:42,608
REPRESENT MORE ACTIVE THINKING

1807
01:04:42,608 --> 01:04:44,677
OR SENSORY MOTOR INTEGRATION

1808
01:04:44,677 --> 01:04:48,781
THAT IS AT HIGHER FREQUENCY.  

1809
01:04:48,781 --> 01:04:51,116
THE DATA ADVANCE AND EEG USED

1810
01:04:51,116 --> 01:04:52,918
FOR FUNCTIONAL IMAGING WAS

1811
01:04:52,918 --> 01:04:54,420
INDEPENDENT COMPONENT ANALYSIS

1812
01:04:54,420 --> 01:04:57,723
DEVELOPED BY EEG LAB PEOPLE, IN

1813
01:04:57,723 --> 01:05:00,359
SAN DIEGO. SO THEY TOOK THIS

1814
01:05:00,359 --> 01:05:02,127
NOISY SIGNAL AND LOOK AT THE

1815
01:05:02,127 --> 01:05:03,329
COMPONENTS HERE, SOME OF THESE

1816
01:05:03,329 --> 01:05:05,598
ARE BRAIN COMPONENTS, THESE

1817
01:05:05,598 --> 01:05:08,601
RELATIVE WHERE IT WOULD BE. BUT

1818
01:05:08,601 --> 01:05:10,402
LIKE THIS ONE WOULD BE AN EYE

1819
01:05:10,402 --> 01:05:12,905
BLINK SO YOU CAN START STATE

1820
01:05:12,905 --> 01:05:13,873
SEPARATING OUT WHAT YOUR BRAIN

1821
01:05:13,873 --> 01:05:20,212
SOURCES AND WHICH ARE WE ARE E

1822
01:05:20,212 --> 01:05:22,248
MANYMG OR SOMETHING DIFFERE DIF.

1823
01:05:22,248 --> 01:05:24,583
SO IF YOU LOOK AT THIS WE GET A

1824
01:05:24,583 --> 01:05:25,885
POWER SPECTRAL ANALYSIS AND HERE

1825
01:05:25,885 --> 01:05:28,754
IS FREQUENCY ON ONE SIDE OVER

1826
01:05:28,754 --> 01:05:31,624
TIME. THE FIRST LINE YOU SEE

1827
01:05:31,624 --> 01:05:32,825
DOTTED LINE WHEN THE REACH

1828
01:05:32,825 --> 01:05:35,160
BEGINS. WHAT YOU SEE IN MANY THE

1829
01:05:35,160 --> 01:05:40,199
MU BAND IN THIS REGION HERE IS A

1830
01:05:40,199 --> 01:05:42,234
VERY STRONG DESYNCHRONIZATION,

1831
01:05:42,234 --> 01:05:43,802
STARTS JUST BEFORE THE TASK

1832
01:05:43,802 --> 01:05:45,871
PERSON ANTICIPATING OR

1833
01:05:45,871 --> 01:05:47,806
PERFORMING PLANNING THE TASK YOU

1834
01:05:47,806 --> 01:05:50,142
ALSO SEE A NICE SIMILAR BAND IN

1835
01:05:50,142 --> 01:05:53,145
THE BETA. WE DID STUDY ON

1836
01:05:53,145 --> 01:05:55,147
HEALTHY ADULTS FIRST WITH EEG TO

1837
01:05:55,147 --> 01:05:57,950
LOOK AT ACTIVATION DURING THE

1838
01:05:57,950 --> 01:05:59,652
TREADMILL WALKING. WHAT WE FOUND

1839
01:05:59,652 --> 01:06:01,954
HERE IS IN TEN ADULTS WE FOUND

1840
01:06:01,954 --> 01:06:04,356
FOUR BRAIN REGIONS PRIMARILY

1841
01:06:04,356 --> 01:06:05,958
ACTIVATED IN THE SCREEN, ON THIS

1842
01:06:05,958 --> 01:06:09,328
MAP YOU CAN REGISTER THESE DATA

1843
01:06:09,328 --> 01:06:10,563
TO THAT LIST, WHAT YOU SEE HERE

1844
01:06:10,563 --> 01:06:13,599
ARE THE DIFFERENT BRAIN REGIONS.

1845
01:06:13,599 --> 01:06:15,567
SO RED WOULD BE PREFRONTAL

1846
01:06:15,567 --> 01:06:17,136
CORTEX, THIS WOULD BE THE PEOPLE

1847
01:06:17,136 --> 01:06:19,171
THAT WILL HAD ACTIVATION IN

1848
01:06:19,171 --> 01:06:20,506
ANTERIOR CINGULATE.  THIS IS

1849
01:06:20,506 --> 01:06:22,408
SENSORY MOTOR AREAS AND

1850
01:06:22,408 --> 01:06:23,742
POSTERIOR PARIETAL. WHAT WE WERE

1851
01:06:23,742 --> 01:06:27,212
ABLE TO DO WITH DATA IS LOOK AT

1852
01:06:27,212 --> 01:06:28,314
REAL TIME ACTIVATION WITH

1853
01:06:28,314 --> 01:06:32,217
SENSORY MOTOR AREAS. SO EACH

1854
01:06:32,217 --> 01:06:32,851
CIRCUMSTANCE SYSTEM WOULD BE AT

1855
01:06:32,851 --> 01:06:33,452
LEAST NEURONS THE BIGGER THE

1856
01:06:33,452 --> 01:06:34,653
CIRCLE THE MORE ACTIVATION. AND

1857
01:06:34,653 --> 01:06:37,256
THEN WE ARE SEEING REAL TIME

1858
01:06:37,256 --> 01:06:39,558
CONNECTIVITY, IN THOSE REGIONS.

1859
01:06:39,558 --> 01:06:41,226
SYNCHRONIZE PRECISELY WITH THE

1860
01:06:41,226 --> 01:06:43,028
CYCLE. WE HAVE ALSO NOW LOOKED

1861
01:06:43,028 --> 01:06:45,197
AT THE EEG DURING TREADMILL

1862
01:06:45,197 --> 01:06:46,699
WALKING IN CEREBRAL PALSY. IN

1863
01:06:46,699 --> 01:06:49,201
THIS STUDY WE HAD NINE WITH CP

1864
01:06:49,201 --> 01:06:51,136
TEN WITH TYPICAL DEVELOPING,

1865
01:06:51,136 --> 01:06:53,505
TYPICAL DEVELOPMENT, AND THEY

1866
01:06:53,505 --> 01:06:55,140
WERE APPROXIMATELY 15 YEARS OF

1867
01:06:55,140 --> 01:06:56,842
AGE. WE FOUND CHILDREN WITH CP

1868
01:06:56,842 --> 01:06:58,744
HAD LOWER RESTING POWER BUT THEY

1869
01:06:58,744 --> 01:07:01,413
HAD SIMILAR TASKS RELATED

1870
01:07:01,413 --> 01:07:03,849
CHANGES BUT WE THINK THIS MAY

1871
01:07:03,849 --> 01:07:04,817
DIFFER WITH CHILDREN WITH

1872
01:07:04,817 --> 01:07:06,285
GREATER INVOLVEMENT. WHAT WE DID

1873
01:07:06,285 --> 01:07:09,555
SEE IS THEY HAD A LOWER PEAK MU

1874
01:07:09,555 --> 01:07:12,224
FREQUENCY. THE REASON THIS IS

1875
01:07:12,224 --> 01:07:13,759
INTERESTING IS THAT A MU

1876
01:07:13,759 --> 01:07:17,997
FREQUENCY IS VERY SLOW IN BABIES

1877
01:07:17,997 --> 01:07:19,398
AROUND 4 TO 8 HERTZ BUT

1878
01:07:19,398 --> 01:07:21,367
INCREASING RAPIDLY IN FIRST

1879
01:07:21,367 --> 01:07:23,235
YEARS AND THEN MORE SLOWLY, THIS

1880
01:07:23,235 --> 01:07:25,170
IS ON CORTICAL MATURATION. SO

1881
01:07:25,170 --> 01:07:26,839
WHAT WE SAW HERE IN THE GROUP

1882
01:07:26,839 --> 01:07:28,640
WITH CP, THEIR FREQUENCY WAS

1883
01:07:28,640 --> 01:07:30,843
LOWER IN DOMINANT AND

1884
01:07:30,843 --> 01:07:33,779
NON-DOMINANT HEM FEAR SUGGESTING

1885
01:07:33,779 --> 01:07:35,547
ABOUT ABNORMALITY OR IMMATURE

1886
01:07:35,547 --> 01:07:37,883
CLINICAL MATURATION. WE CAN DO

1887
01:07:37,883 --> 01:07:39,318
SAME THING WITH HEALTHY ADULTS

1888
01:07:39,318 --> 01:07:41,487
IN CHILDREN WITH CP. YOU SEE

1889
01:07:41,487 --> 01:07:42,488
PATTERNS OF TWO DIFFERENT

1890
01:07:42,488 --> 01:07:44,790
CHILDREN WHERE THIS CHILD IS

1891
01:07:44,790 --> 01:07:48,994
STILL VERY MUCH BILATERAL

1892
01:07:48,994 --> 01:07:50,329
ACTIVATION, THIS CHILD HAS

1893
01:07:50,329 --> 01:07:51,096
UNILATERAL ACTIVATION FOR

1894
01:07:51,096 --> 01:07:54,466
WALKING WHICH IS LATERAL TASK. 

1895
01:07:54,466 --> 01:07:56,001
THESE WERE VIRTUALLY

1896
01:07:56,001 --> 01:07:58,037
INDISTINGUISHABLE FROM GMSCS 1

1897
01:07:58,037 --> 01:08:00,606
AND WHAT WE LEARN FROM THIS,

1898
01:08:00,606 --> 01:08:02,007
THIS IS AN ARTICLE LOOKING AT

1899
01:08:02,007 --> 01:08:03,809
THESE DIFFERENT MODALITIES IS

1900
01:08:03,809 --> 01:08:06,812
THAT EACH CHILD WITH CP HAS

1901
01:08:06,812 --> 01:08:09,848
THEIR OWN UNIQUE NEUROANATOMICAL

1902
01:08:09,848 --> 01:08:12,284
AND PHYSIOLOGICAL PROFILE AND

1903
01:08:12,284 --> 01:08:14,620
MORE WITH BRAIN INJURY. WE ARE

1904
01:08:14,620 --> 01:08:16,155
STARTING OUR STUDY THAT WE

1905
01:08:16,155 --> 01:08:17,556
STARTED BEFORE THE PANDEMIC

1906
01:08:17,556 --> 01:08:18,824
LOOKING AT EARLY MOTOR

1907
01:08:18,824 --> 01:08:20,626
DEVELOPMENT LOOKING AT INFANTS,

1908
01:08:20,626 --> 01:08:22,795
AS YOUNG AS THREE TO FIVE

1909
01:08:22,795 --> 01:08:26,031
MONTHS. LOOKING AT REACHING AND

1910
01:08:26,031 --> 01:08:27,266
WALKING. WE HAVE GOTTEN SOME

1911
01:08:27,266 --> 01:08:29,268
REALLY EXCITING DATA IN YOUNG

1912
01:08:29,268 --> 01:08:31,537
INFANTS, THIS IS A 12 MONTHS OLD

1913
01:08:31,537 --> 01:08:32,971
INFANT. WHILE THEY ARE TAKING A

1914
01:08:32,971 --> 01:08:38,777
STEP. YOU SEE HERE MU TESSIE

1915
01:08:38,777 --> 01:08:41,080
IONIZATION BETA

1916
01:08:41,080 --> 01:08:44,249
DESYNCHRONIZATION. THE FREQUENCY

1917
01:08:44,249 --> 01:08:47,886
IS LOW LIKE LOW IN THE 4 TO 10

1918
01:08:47,886 --> 01:08:49,888
HERTZ RANGE. WE ARE LOOKING AT

1919
01:08:49,888 --> 01:08:51,457
EEG NEUROFEEDBACK NOW TO

1920
01:08:51,457 --> 01:08:53,926
STRENGTHEN MOTOR PATHWAYS. THIS

1921
01:08:53,926 --> 01:08:55,327
EVOLVEED FROM THE BRAIN COMPUTER

1922
01:08:55,327 --> 01:08:57,129
INTERFACE FIELD, WHERE YOU

1923
01:08:57,129 --> 01:08:58,564
HARNESS BRAIN SIGNALS TO

1924
01:08:58,564 --> 01:09:00,399
ACTIVATE DEVICES MOSTLY USING

1925
01:09:00,399 --> 01:09:03,569
MOTOR IMAGERY, IF YOU GO TO

1926
01:09:03,569 --> 01:09:05,604
REHAB ROOM MOST STUDIES PUBLISH

1927
01:09:05,604 --> 01:09:07,039
REDIRECT EXAMINATION IN STROKE,

1928
01:09:07,039 --> 01:09:10,042
ONLY HANDFUL CP AND RESULTS ARE

1929
01:09:10,042 --> 01:09:10,876
INCONSISTENT BUT SOME VERY

1930
01:09:10,876 --> 01:09:14,413
PROMISING.  WE FROM OUR READ OF

1931
01:09:14,413 --> 01:09:16,648
THE LITERATURE EFFECTIVE

1932
01:09:16,648 --> 01:09:18,383
PARADIGMS OR DETECT BRAIN

1933
01:09:18,383 --> 01:09:19,685
SIGNATURE SIGNAL REAL TIME

1934
01:09:19,685 --> 01:09:21,553
DURING MOTOR EVENT USE SIGNAL TO

1935
01:09:21,553 --> 01:09:23,388
ACTIVATE ASSISTIVE DEVICE WHILE

1936
01:09:23,388 --> 01:09:25,491
MOVING FES OR ROBOT.  AND THEN

1937
01:09:25,491 --> 01:09:27,392
THE PERSON GETS FEEDBACK ON

1938
01:09:27,392 --> 01:09:29,595
PERFORMANCE AND WE ARE STARTING

1939
01:09:29,595 --> 01:09:32,197
THIS TRIAL LOOKING AT DORSAL

1940
01:09:32,197 --> 01:09:33,165
FLEXION IN CHILDREN WITH CP.

1941
01:09:33,165 --> 01:09:35,501
THIS IS OUR SET UP HERE, THIS IS

1942
01:09:35,501 --> 01:09:36,668
LOOKING AT TRYING TO IDENTIFY

1943
01:09:36,668 --> 01:09:43,976
WHICH IC IS MOST ACTIVE TO USE. 

1944
01:09:43,976 --> 01:09:46,044
WHEN THE PERSON GOES TO MOVE TO

1945
01:09:46,044 --> 01:09:49,448
ACTIVATE FES AND THE PERSON GETS

1946
01:09:49,448 --> 01:09:51,116
TO SEE ANKLE MOTION TO GIVE

1947
01:09:51,116 --> 01:09:53,218
FEEDBACK ON PERFORMANCE. QUICKLY

1948
01:09:53,218 --> 01:09:57,623
I WANT TO TALK ABOUT THE OTHER

1949
01:09:57,623 --> 01:09:59,224
TECHNOLOGIES.  THIS IS THE

1950
01:09:59,224 --> 01:10:00,959
ROBOTS WE DESIGNED IN OUR LAB

1951
01:10:00,959 --> 01:10:02,427
FIRST PROUD TO GATE CALLED THE

1952
01:10:02,427 --> 01:10:05,764
PREX. IT IS A MOTOR HERE AT THE

1953
01:10:05,764 --> 01:10:09,635
KNEE JOINT YOU CAN SWAP THIS OUT

1954
01:10:09,635 --> 01:10:13,672
OR USE TOGETHER WITH FES AND

1955
01:10:13,672 --> 01:10:14,940
CUSTOM OR NOTTIC. THE BIG

1956
01:10:14,940 --> 01:10:19,077
DIFFERENCE ANT THIS DEVOICE IS

1957
01:10:19,077 --> 01:10:21,013
IT IS CONTROL, VERY DIFFERENT

1958
01:10:21,013 --> 01:10:22,681
THAN IF YOU THINK ABOUT MOST OF

1959
01:10:22,681 --> 01:10:24,416
THE OTHER ROBOTS OUT THERE WHERE

1960
01:10:24,416 --> 01:10:26,151
THEY ARE ACTUALLY CONTROLLING

1961
01:10:26,151 --> 01:10:29,221
THE KNEE TRAJECTORY OR JOINT

1962
01:10:29,221 --> 01:10:30,189
TRAJECTORY. I WILL EXPLAIN WHY

1963
01:10:30,189 --> 01:10:33,425
THIS IS SO UNIQUE. SO USE

1964
01:10:33,425 --> 01:10:36,128
POSITION CONTROLLED DEVICE LIKE

1965
01:10:36,128 --> 01:10:37,963
LOCOMAT YOU ARE GETTING SOME

1966
01:10:37,963 --> 01:10:39,498
FORM OF CONTINUOUS ASSISTANCE,

1967
01:10:39,498 --> 01:10:42,401
FOR CHILDREN WITH CP THE KNEE

1968
01:10:42,401 --> 01:10:44,536
ALIGNMENT CAN BE DIFFICULT

1969
01:10:44,536 --> 01:10:47,639
BECAUSE IT IS VELOCITY AND

1970
01:10:47,639 --> 01:10:50,642
POSITION DEPENDENT, CAN LEAD TO

1971
01:10:50,642 --> 01:10:52,077
SLACKING WHERE THE DESIZE VICE

1972
01:10:52,077 --> 01:10:54,179
TAKES OVER, IT CONTROLS

1973
01:10:54,179 --> 01:10:56,415
TRAJECTORY, IT CAN ENFORCE THE

1974
01:10:56,415 --> 01:10:57,716
CERTAIN -- IT DOESN'T ENS FOR

1975
01:10:57,716 --> 01:10:59,351
THE TRAJECTORY, IT DOESN'T LET

1976
01:10:59,351 --> 01:11:00,552
THE PERSON DECIDE THIS

1977
01:11:00,552 --> 01:11:02,321
THEMSELVES. THE VALUE, FOR

1978
01:11:02,321 --> 01:11:03,388
EXAMPLE SPINAL CORD OR PATIENTS

1979
01:11:03,388 --> 01:11:05,157
WITH CEP WHO DON'T HAVE THE

1980
01:11:05,157 --> 01:11:07,025
STRENGTH TO BE ABLE THE REHAB

1981
01:11:07,025 --> 01:11:09,595
AND GET BETTER AT WALKING

1982
01:11:09,595 --> 01:11:11,930
PERFORMANCE. IN CONTRAST

1983
01:11:11,930 --> 01:11:13,232
INTERMITTENT ASSISTANCE AND ONLY

1984
01:11:13,232 --> 01:11:14,800
HELPS SOMEONE NEEDED.  NO KNEE

1985
01:11:14,800 --> 01:11:16,535
ALIGNMENT ISSUES, IT IS LESS

1986
01:11:16,535 --> 01:11:18,704
LIKELY THOUGH IT CAN CAUSE A

1987
01:11:18,704 --> 01:11:20,305
RESPONSE WE CAN CONTROL

1988
01:11:20,305 --> 01:11:22,040
VELOCITY, THE PERSON HAS TO

1989
01:11:22,040 --> 01:11:24,076
EXERT MORE FORCE TO REMAIN

1990
01:11:24,076 --> 01:11:27,079
UPRIGHT AND INTEGRATE WITH

1991
01:11:27,079 --> 01:11:29,681
VOLUNTARY CONTROLLING. IT

1992
01:11:29,681 --> 01:11:30,816
DOESN'T ENCODE DIFFERENT CONTROL

1993
01:11:30,816 --> 01:11:32,651
THERE. THIS REQUIRES ABILITY TO

1994
01:11:32,651 --> 01:11:34,319
STAND AND MAINTAIN SUPPORT. THIS

1995
01:11:34,319 --> 01:11:36,788
IS A YOUNG CHILD WITH MILD --

1996
01:11:36,788 --> 01:11:38,824
ONE OF THE FIRST TO USE OUR

1997
01:11:38,824 --> 01:11:42,828
FIRST PROTOTYPE, THIS IS HIM

1998
01:11:42,828 --> 01:11:45,097
BEFORE CROUCHED MORE ON THE

1999
01:11:45,097 --> 01:11:45,964
LEFT, DRAGGINGSING HIS TOES AN

2000
01:11:45,964 --> 01:11:49,067
NOW YOU WILL SEE HIM WITH THE

2001
01:11:49,067 --> 01:11:54,706
DEVICE AND HE IS MORE UPRIGHT

2002
01:11:54,706 --> 01:11:55,407
GETTING STRAIGHT MOST OF THE

2003
01:11:55,407 --> 01:11:56,675
TIME.  THIS IS THE PREVIOUS

2004
01:11:56,675 --> 01:11:58,911
DEVICE THAT WAS COUPLE BEARSOME

2005
01:11:58,911 --> 01:12:00,846
NOW EVERYTHING IS EMBEDDED

2006
01:12:00,846 --> 01:12:03,448
SEAMLESSLY ON THE DEVICE ITSELF 

2007
01:12:03,448 --> 01:12:07,052
SO FINAL THOUGHTS WE ARE ALL

2008
01:12:07,052 --> 01:12:09,588
AWARE WE HAVE OUTCOMES, STILL

2009
01:12:09,588 --> 01:12:10,422
MODEST AND ENGINEERING

2010
01:12:10,422 --> 01:12:13,325
TECHNOLOGY HAS THE CAPACITY TO

2011
01:12:13,325 --> 01:12:14,660
ALER THIS PROGRESS KNOWSIS.  WE

2012
01:12:14,660 --> 01:12:16,395
BELIEVE REAL TIME BRAIN IMAGING

2013
01:12:16,395 --> 01:12:19,865
HELP DESIGN BETTER PERSONALIZED

2014
01:12:19,865 --> 01:12:22,601
INTERVENTIONS AND MAY ALSO BE

2015
01:12:22,601 --> 01:12:23,268
INTERVENTIONS IN AND OF

2016
01:12:23,268 --> 01:12:25,637
THEMSELVES.  ROBOTICS ARE

2017
01:12:25,637 --> 01:12:27,172
ASSISTIVE REHABILITATIVE CAN

2018
01:12:27,172 --> 01:12:28,607
TRANSFORM CAPABILITIES

2019
01:12:28,607 --> 01:12:32,044
PARTICIPATION EVERY DAY LIFE,

2020
01:12:32,044 --> 01:12:34,880
AND WE NEED TO DEVELOP MORE

2021
01:12:34,880 --> 01:12:36,782
PERSONALIZED PROBOTS THAT

2022
01:12:36,782 --> 01:12:39,217
INTEGRATE SEAMLESSLY WITH

2023
01:12:39,217 --> 01:12:39,618
VOLUNTARY CONTROL.

2024
01:12:39,618 --> 01:12:42,587
>> MY NAME IS MARK
PETERSON ON

2025
01:12:42,587 --> 01:12:43,989
FACULTY UNIVERSITY OF MICHIGAN

2026
01:12:43,989 --> 01:12:45,957
MEDICINE DEPARTMENT OF MEDICAL

2027
01:12:45,957 --> 01:12:48,226
MEDICINE AND REHABILITATION. I

2028
01:12:48,226 --> 01:12:48,960
WILL TALK ABOUT UNDERSTANDING

2029
01:12:48,960 --> 01:12:50,262
THE HEALTHCARE NEEDS OF FOR

2030
01:12:50,262 --> 01:12:52,898
ADULTS WITH CEREBRAL PALSY. SO

2031
01:12:52,898 --> 01:12:56,335
WE ARE EXPERIENCING TWO MAJOR

2032
01:12:56,335 --> 01:12:59,304
DEMOGRAPHICS TRENDS IN THE

2033
01:12:59,304 --> 01:13:01,640
UNITED STATES, AS WELL AS

2034
01:13:01,640 --> 01:13:03,208
SOCIETY WHICH NUMBER OF ADULTS

2035
01:13:03,208 --> 01:13:05,010
GROW OVER 65 YEARS OF AGE IS

2036
01:13:05,010 --> 01:13:08,413
GROWING SIGNIFICANTLY. OBVIOUSLY

2037
01:13:08,413 --> 01:13:10,182
WITH KNOW WITH AGE THERE IS

2038
01:13:10,182 --> 01:13:13,819
INCREASE RISK FOR FRAILTY

2039
01:13:13,819 --> 01:13:15,053
PHYSICAL DYSFUNCTION, MOBILITY

2040
01:13:15,053 --> 01:13:18,390
DISABILITY CHRONIC DISEASE RISK

2041
01:13:18,390 --> 01:13:19,658
CARDIOVASCULAR DISEASE RISK

2042
01:13:19,658 --> 01:13:21,126
MORTALITY AND ALL CAUSE MORT.

2043
01:13:21,126 --> 01:13:23,495
TODAY WE ARE TALKING CEREBRAL

2044
01:13:23,495 --> 01:13:24,629
PALSY, IT IS RARE THAT WE HAVE

2045
01:13:24,629 --> 01:13:26,531
THE LUXURY TO BE ABLE THE TALK

2046
01:13:26,531 --> 01:13:29,000
ESPECIALLY NATIONAL FORUM ABOUT

2047
01:13:29,000 --> 01:13:31,336
AGING WITH CEREBRAL PALSY. BUT

2048
01:13:31,336 --> 01:13:32,571
AS EVERYBODY HERE KNOWS CP IS

2049
01:13:32,571 --> 01:13:34,239
THE MOST COMMON PEDIATRIC ONSET

2050
01:13:34,239 --> 01:13:37,109
OF PHYSICAL DISABILITY WITH

2051
01:13:37,109 --> 01:13:37,909
ESTIMATED PREF RENNES RANGING

2052
01:13:37,909 --> 01:13:40,112
FROM AROUND 2 B. CXFC 6 TO 3.1

2053
01:13:40,112 --> 01:13:43,081
CASES PER 1,000 LIVE BIRTHS.  

2054
01:13:43,081 --> 01:13:46,318
MANY INDIVIDUALS WITH CP EXPECT

2055
01:13:46,318 --> 01:13:47,652
NORMAL LIFE EXPECTANCY BUT THERE

2056
01:13:47,652 --> 01:13:49,988
IS GENERALLY LACK OF FOLLOW-UP

2057
01:13:49,988 --> 01:13:51,490
ESPECIALLY CLINICALLY WITH

2058
01:13:51,490 --> 01:13:54,059
REGARD TO COORDINATION OF CARE,

2059
01:13:54,059 --> 01:13:55,327
ESPECIALLY AS TRANSITION FROM

2060
01:13:55,327 --> 01:13:58,830
PEDIATRIC TO ADULT PRIMARY CARE

2061
01:13:58,830 --> 01:14:01,600
SOS THE LAST DECADE OR SO CORPUS

2062
01:14:01,600 --> 01:14:03,135
OF MY WORK HAS BEEN TO TRY TO

2063
01:14:03,135 --> 01:14:04,636
UNDERSTAND THE NATURAL HISTORY

2064
01:14:04,636 --> 01:14:07,272
OF CEREBRAL PALSY. ORIGIN FAMILY

2065
01:14:07,272 --> 01:14:09,908
STARTED TO STUDY GO TO THE

2066
01:14:09,908 --> 01:14:11,343
INTERSECTION BETWEEN AGING AND

2067
01:14:11,343 --> 01:14:14,446
OBESITY IN THIS POPULATION. THE

2068
01:14:14,446 --> 01:14:16,715
DUAL PATHOLOGY THAT HAPPENS AT

2069
01:14:16,715 --> 01:14:19,918
THE MUSCULOSKELETAL SYSTEM BUT

2070
01:14:19,918 --> 01:14:21,820
ALSO CARDIOVASCULAR METABOLIC

2071
01:14:21,820 --> 01:14:23,655
SYSTEM AND OBVIOUSLY THERE'S

2072
01:14:23,655 --> 01:14:25,924
SIGNIFICANT GROWTH WORLDWIDE

2073
01:14:25,924 --> 01:14:27,893
ACROSS ORGAN SYSTEMS. I WILL BE

2074
01:14:27,893 --> 01:14:29,194
TALKING MORE ABOUT THE WORK THAT

2075
01:14:29,194 --> 01:14:30,195
WE HAVE DONE HERE AT THE

2076
01:14:30,195 --> 01:14:35,067
UNIVERSITY OF MICHIGAN. SO WHAT

2077
01:14:35,067 --> 01:14:36,435
HAPPENS TO CHILDREN ADOLESCENTS

2078
01:14:36,435 --> 01:14:39,638
AND YOUNG ADULTS WITH CP

2079
01:14:39,638 --> 01:14:41,072
TRANSITION FROM, BURNING

2080
01:14:41,072 --> 01:14:42,674
QUESTION THAT I HAVE THAT IS

2081
01:14:42,674 --> 01:14:46,311
FRAMED MY CAREER. OF NOTE THERE

2082
01:14:46,311 --> 01:14:48,080
ARE MORE ADULTS LIVING WITH

2083
01:14:48,080 --> 01:14:48,680
CEREBRAL PALSY IN THE UNITED

2084
01:14:48,680 --> 01:14:49,581
STATES THAN THERE ARE CHILDREN

2085
01:14:49,581 --> 01:14:51,650
WITH CP. SO I THINK IT IS

2086
01:14:51,650 --> 01:14:52,651
IMPORTANT THAT WE ACKNOWLEDGE

2087
01:14:52,651 --> 01:14:55,253
THE FACT THAT LIFE SPAN IS THE

2088
01:14:55,253 --> 01:14:59,424
MAJOR ISSUE, MAJOR IMPORTANT FOR

2089
01:14:59,424 --> 01:15:02,994
RESEARCH POPULATION. SOME OF THE

2090
01:15:02,994 --> 01:15:05,097
TARGET especially clinically is

2091
01:15:05,097 --> 01:15:07,566
folks with CP experience

2092
01:15:07,566 --> 01:15:09,067
accelerated aging, premature

2093
01:15:09,067 --> 01:15:11,203
frailty, they have normal weight

2094
01:15:11,203 --> 01:15:14,005
obesity so risk for being normal

2095
01:15:14,005 --> 01:15:16,775
weight but high fat stores. They

2096
01:15:16,775 --> 01:15:19,311
have consume extremely high

2097
01:15:19,311 --> 01:15:22,781
sedentary volumes of behavior. 

2098
01:15:22,781 --> 01:15:24,783
One first study we did here

2099
01:15:24,783 --> 01:15:26,485
trying to understand the

2100
01:15:26,485 --> 01:15:28,053
morphological risk factors

2101
01:15:28,053 --> 01:15:29,688
associated with being adult with

2102
01:15:29,688 --> 01:15:32,424
CP with -- to take a look at

2103
01:15:32,424 --> 01:15:34,893
muscle and fat density and

2104
01:15:34,893 --> 01:15:38,897
volumes in adults with CP. 

2105
01:15:38,897 --> 01:15:40,031
Without going to details but

2106
01:15:40,031 --> 01:15:42,134
using computer tomography we

2107
01:15:42,134 --> 01:15:45,036
look at imaging from the

2108
01:15:45,036 --> 01:15:46,538
abdominal region of adults with

2109
01:15:46,538 --> 01:15:48,440
CP matched to adults without CP.

2110
01:15:48,440 --> 01:15:51,877
You can see here the L 4 level

2111
01:15:51,877 --> 01:15:55,881
lumbar 4 level in adults with --

2112
01:15:55,881 --> 01:15:56,648
without cerebral palsy masked to

2113
01:15:56,648 --> 01:15:58,750
adults with CP. These are not

2114
01:15:58,750 --> 01:16:03,788
overweight individuals but

2115
01:16:03,788 --> 01:16:06,791
40-year-old male CP with 6

2116
01:16:06,791 --> 01:16:09,561
kilograms of body mask, all

2117
01:16:09,561 --> 01:16:11,296
adults, significantly greater

2118
01:16:11,296 --> 01:16:14,699
adiposity not just in the

2119
01:16:14,699 --> 01:16:17,235
subcutaneous but and back but

2120
01:16:17,235 --> 01:16:19,371
subcutaneous depot but

2121
01:16:19,371 --> 01:16:21,106
interabdominal or visceral depot

2122
01:16:21,106 --> 01:16:24,042
as seen in the darker shaded

2123
01:16:24,042 --> 01:16:28,813
area. What is obvious density of

2124
01:16:28,813 --> 01:16:30,482
the muscle as well as

2125
01:16:30,482 --> 01:16:31,750
(inaudible) was significantly

2126
01:16:31,750 --> 01:16:35,353
lower in the adult with CP than

2127
01:16:35,353 --> 01:16:37,656
matched controls. That was the

2128
01:16:37,656 --> 01:16:39,824
case also for bone but for the

2129
01:16:39,824 --> 01:16:41,993
first time we have shown that

2130
01:16:41,993 --> 01:16:44,563
adipose tissue within muscle

2131
01:16:44,563 --> 01:16:46,765
even in the trunk musculature is

2132
01:16:46,765 --> 01:16:47,699
significantly worse and

2133
01:16:47,699 --> 01:16:49,234
certainly there's risk

2134
01:16:49,234 --> 01:16:51,269
associated with having visceral

2135
01:16:51,269 --> 01:16:53,338
adiposity at this level. So that

2136
01:16:53,338 --> 01:16:55,273
lid us to follow-up in try to

2137
01:16:55,273 --> 01:16:57,609
ask the question, given loss of

2138
01:16:57,609 --> 01:16:59,277
absence in lean muscle mass,

2139
01:16:59,277 --> 01:17:00,612
muscle and bone, increase

2140
01:17:00,612 --> 01:17:02,781
storage of visceral adiposity,

2141
01:17:02,781 --> 01:17:04,916
as well as muscular adipose

2142
01:17:04,916 --> 01:17:06,217
tissue, is increase risk of

2143
01:17:06,217 --> 01:17:08,987
chronic disease in CP, at this

2144
01:17:08,987 --> 01:17:11,823
time there were no studies to

2145
01:17:11,823 --> 01:17:15,794
look at health outcomes and

2146
01:17:15,794 --> 01:17:16,361
non-communicable disease, in

2147
01:17:16,361 --> 01:17:18,129
this population. So I was very

2148
01:17:18,129 --> 01:17:20,665
committed to trying to

2149
01:17:20,665 --> 01:17:23,034
understand that and we published

2150
01:17:23,034 --> 01:17:25,837
in 2015 a paper in JAMA which

2151
01:17:25,837 --> 01:17:27,639
used medical expenditure panel

2152
01:17:27,639 --> 01:17:31,243
survey and very descriptive

2153
01:17:31,243 --> 01:17:33,278
study, very much cross sectional

2154
01:17:33,278 --> 01:17:35,347
prevalence study look at fairly

2155
01:17:35,347 --> 01:17:38,350
large 2000 adults with CP. Using

2156
01:17:38,350 --> 01:17:40,151
diagnostic to identify cohort

2157
01:17:40,151 --> 01:17:44,189
with and without CP. You can see

2158
01:17:44,189 --> 01:17:47,058
in blue versus yellow, adults

2159
01:17:47,058 --> 01:17:49,294
with CP had between two and five

2160
01:17:49,294 --> 01:17:53,064
fold increase risk of are having

2161
01:17:53,064 --> 01:17:54,899
chronic disease across organ

2162
01:17:54,899 --> 01:17:56,234
systems look at diabetes,

2163
01:17:56,234 --> 01:18:01,339
asthma, hypertension, heart

2164
01:18:01,339 --> 01:18:03,441
problems, stroke emphysema and

2165
01:18:03,441 --> 01:18:06,378
joint pain arthritis.  We wanted

2166
01:18:06,378 --> 01:18:09,514
to explore more context of

2167
01:18:09,514 --> 01:18:10,715
longitudesnal outcomes so able

2168
01:18:10,715 --> 01:18:12,150
to put together a cohort of

2169
01:18:12,150 --> 01:18:17,922
individuals with CP who are

2170
01:18:17,922 --> 01:18:19,424
ensured and look a age related

2171
01:18:19,424 --> 01:18:23,361
he will effects of CP on

2172
01:18:23,361 --> 01:18:25,797
cardiometabolic disease. In

2173
01:18:25,797 --> 01:18:28,533
three years of continuous

2174
01:18:28,533 --> 01:18:31,503
enrollment in a fairly large

2175
01:18:31,503 --> 01:18:35,073
cohort of 2600 adults with CP,

2176
01:18:35,073 --> 01:18:38,376
found cumulative events of

2177
01:18:38,376 --> 01:18:40,178
cardiometabolic range from

2178
01:18:40,178 --> 01:18:44,082
64.4%, and you can see the range

2179
01:18:44,082 --> 01:18:45,316
across different conditions but

2180
01:18:45,316 --> 01:18:47,385
importantly we found the three

2181
01:18:47,385 --> 01:18:54,125
plus year cumulative incidence,

2182
01:18:54,125 --> 01:18:54,759
hypercholesterolemia, were

2183
01:18:54,759 --> 01:18:57,929
similar to lifetime risks in

2184
01:18:57,929 --> 01:18:59,564
otherwise healthy non-CP general

2185
01:18:59,564 --> 01:19:00,598
population. So for the first

2186
01:19:00,598 --> 01:19:03,601
time it starts to become obvious

2187
01:19:03,601 --> 01:19:05,236
that adults with CP have risk

2188
01:19:05,236 --> 01:19:06,905
for chronic disease but

2189
01:19:06,905 --> 01:19:08,573
especially for things that may

2190
01:19:08,573 --> 01:19:10,141
lead to cardiovascular disease

2191
01:19:10,141 --> 01:19:15,380
risk.  The term early aging

2192
01:19:15,380 --> 01:19:16,781
seems to be around but describe

2193
01:19:16,781 --> 01:19:20,218
phenotype of CP, so we did a

2194
01:19:20,218 --> 01:19:23,488
study by Dr. Daniel to look at

2195
01:19:23,488 --> 01:19:25,023
non-communicable diseases and

2196
01:19:25,023 --> 01:19:26,091
multi-morbidity in young adults

2197
01:19:26,091 --> 01:19:30,095
with CP, was we thought if we

2198
01:19:30,095 --> 01:19:32,263
can look at we can't exactly

2199
01:19:32,263 --> 01:19:35,133
study age acceleration in this

2200
01:19:35,133 --> 01:19:36,468
population but not at this point

2201
01:19:36,468 --> 01:19:38,103
but look at non-communicable

2202
01:19:38,103 --> 01:19:40,305
disease in young adults we may

2203
01:19:40,305 --> 01:19:42,107
have some assertiveness and

2204
01:19:42,107 --> 01:19:43,441
definitive evidence that adults

2205
01:19:43,441 --> 01:19:45,276
with CP maybe at risk for

2206
01:19:45,276 --> 01:19:47,779
chronic disease early where

2207
01:19:47,779 --> 01:19:49,514
life.  Using a fairly large

2208
01:19:49,514 --> 01:19:50,949
cohort of adults here at the

2209
01:19:50,949 --> 01:19:53,852
University of Michigan, clinical

2210
01:19:53,852 --> 01:19:56,755
cohort, we looked at 18 to

2211
01:19:56,755 --> 01:19:58,356
30-year-olds. Examined evidence

2212
01:19:58,356 --> 01:20:00,458
basically of having perfectly

2213
01:20:00,458 --> 01:20:02,026
healthy, which is a morbidity

2214
01:20:02,026 --> 01:20:05,930
score of zero, and then out to

2215
01:20:05,930 --> 01:20:07,298
having some disease, these are

2216
01:20:07,298 --> 01:20:10,869
chronic diseases across host of

2217
01:20:10,869 --> 01:20:12,203
non-communicable disease and

2218
01:20:12,203 --> 01:20:13,171
organ systems so morbidity score

2219
01:20:13,171 --> 01:20:16,040
of one, two, three and four or

2220
01:20:16,040 --> 01:20:18,510
more. What we found was that

2221
01:20:18,510 --> 01:20:19,611
young adults without CP high

2222
01:20:19,611 --> 01:20:22,013
prevalence of being healthy into

2223
01:20:22,013 --> 01:20:25,884
much less extend 68% versus 35%

2224
01:20:25,884 --> 01:20:29,020
adults with CP young adults with

2225
01:20:29,020 --> 01:20:32,090
CP less likely to be healthy

2226
01:20:32,090 --> 01:20:36,394
this the clinical cohort we

2227
01:20:36,394 --> 01:20:38,363
assembled. Many the light shaded

2228
01:20:38,363 --> 01:20:40,698
gray bar are adults with CP

2229
01:20:40,698 --> 01:20:43,535
ambulatory or higher function,

2230
01:20:43,535 --> 01:20:46,171
1, 2, 3s AND LOWER FUNCTIONING

2231
01:20:46,171 --> 01:20:48,306
4 AND 5s. SO WHAT YOU CAN SEE

2232
01:20:48,306 --> 01:20:50,441
IS VERY OBVIOUS BY THE BAR CHART

2233
01:20:50,441 --> 01:20:53,478
AND THE MORBIDITY SCORE GOES UP

2234
01:20:53,478 --> 01:20:54,746
AND FOR FOLKS WITH CP THEY HAVE

2235
01:20:54,746 --> 01:20:58,883
HIGHER RISK OF HAVING ONE, TWO,

2236
01:20:58,883 --> 01:21:01,953
THREE OR FOUR AND MORE MORBIDITY

2237
01:21:01,953 --> 01:21:05,924
AMONG 18-30-YEAR-OLDS. SO SINCE

2238
01:21:05,924 --> 01:21:08,593
THEN WE HAVE STUDIED VIRTUALLY

2239
01:21:08,593 --> 01:21:11,396
EVERY ORGAN SEASONAL SPANNING

2240
01:21:11,396 --> 01:21:14,632
MUSCULOSKELETAL TO MENTAL HEALTH

2241
01:21:14,632 --> 01:21:16,234
KIDNEY DISEASE DONE TREMENDOUS

2242
01:21:16,234 --> 01:21:18,236
WORK ON THAT, CIRCULATORY

2243
01:21:18,236 --> 01:21:19,003
DISEASE AND BASICALLY WHAT WE

2244
01:21:19,003 --> 01:21:23,842
HAVE FOUND IS THAT TO IT SOUNDS

2245
01:21:23,842 --> 01:21:25,210
BAD, THERE SEEMS TO BE ROBUST

2246
01:21:25,210 --> 01:21:29,047
EVIDENCE THAT ADULTS WITH CP

2247
01:21:29,047 --> 01:21:30,148
EXPERIENCE EARLY AND

2248
01:21:30,148 --> 01:21:31,783
SIGNIFICANTLY GREATER RISK FOR

2249
01:21:31,783 --> 01:21:32,750
NON-COMMUNICABLE DISEASE.

2250
01:21:32,750 --> 01:21:35,954
THE GOOD NEWS IS IS THAT E WE

2251
01:21:35,954 --> 01:21:36,955
DON'T HAVE TIME TO TALK ABOUT

2252
01:21:36,955 --> 01:21:39,924
THE THIS TODAY BUT THERE IS A

2253
01:21:39,924 --> 01:21:46,631
SIGNIFICANT EFFECT FOR EXERCISE

2254
01:21:46,631 --> 01:21:50,168
AND REDUCING SEDENTARY BEHAVIOR

2255
01:21:50,168 --> 01:21:52,337
ACROSS POPULATIONS NOT JUST CP.

2256
01:21:52,337 --> 01:21:53,605
SO LOTS OF POPULATIONS

2257
01:21:53,605 --> 01:21:55,707
IDENTIFYING HEALTHY BEHAVIORAL

2258
01:21:55,707 --> 01:21:57,842
STRATEGIES TO INTERVENE, IMPROVE

2259
01:21:57,842 --> 01:21:59,477
PHYSICAL ACTIVITY, SLEEP,

2260
01:21:59,477 --> 01:22:01,079
IMPROVE HEALTHY EATING AND

2261
01:22:01,079 --> 01:22:04,315
NUTRITIONAL HABITS AND REDUCE

2262
01:22:04,315 --> 01:22:06,551
STRESS, TO COMBAT OR FORE STALL

2263
01:22:06,551 --> 01:22:17,061
A LOT OF CONDITIONS. IN ADULT

2264
01:22:23,535 --> 01:22:25,603
CHILDREN:  AND SO BASICALLY WHAT

2265
01:22:25,603 --> 01:22:27,972
WE STARTED TO ASK IS IS THERE

2266
01:22:27,972 --> 01:22:31,142
INCREASE RISK FOR MENTAL HEALTH

2267
01:22:31,142 --> 01:22:32,844
DISORDERS IN ADULTS WITH CP AND

2268
01:22:32,844 --> 01:22:34,212
WHAT EXTENT PAIN A CONTRIBUTING

2269
01:22:34,212 --> 01:22:37,982
FACTOR TO THOSE.  SO HIGHLIGHT

2270
01:22:37,982 --> 01:22:41,486
SOME OF MORE RECENT PAPERS. ONE

2271
01:22:41,486 --> 01:22:43,254
STUDY WAS IN COLLABORATION WITH

2272
01:22:43,254 --> 01:22:45,823
DR. JENNIFER RYAN AND KIMBERLY

2273
01:22:45,823 --> 01:22:48,326
SMITH IN UK USING UK GP DATA

2274
01:22:48,326 --> 01:22:49,794
EXAMINE RISK OF DEVELOPING

2275
01:22:49,794 --> 01:22:51,529
DEPRESSION AN ANXIETY IN ADULTS

2276
01:22:51,529 --> 01:22:56,334
WITH CP IN THE UK. SO IN FAIRLY

2277
01:22:56,334 --> 01:22:57,835
LARGE COHORT CP MATCHED TO

2278
01:22:57,835 --> 01:22:59,704
ADULTS WITHOUT CP IN UK, WE LOOK

2279
01:22:59,704 --> 01:23:01,205
AT COMPARING INCIDENCE OF

2280
01:23:01,205 --> 01:23:06,311
DEPRESSION ANXIETY, WITH AGE SEX

2281
01:23:06,311 --> 01:23:07,045
AND PRACTICE MATCH REFERENCE

2282
01:23:07,045 --> 01:23:10,815
GROUP. WE FOUND FOR BOTH ANXIETY

2283
01:23:10,815 --> 01:23:12,951
DEPRESSION HAVING CEREBRAL PALSY

2284
01:23:12,951 --> 01:23:14,385
INNED THE RISK FOR DEVELOPING

2285
01:23:14,385 --> 01:23:16,621
DEPRESSION AND ANXIETY EVEN

2286
01:23:16,621 --> 01:23:19,757
AFTER ADJUSTING FOR

2287
01:23:19,757 --> 01:23:21,726
PRE-AGGRESSION, ANXIETY,

2288
01:23:21,726 --> 01:23:23,828
DIAGNOSIS OF DIABETES, LUNG

2289
01:23:23,828 --> 01:23:25,196
DISEASE, OSTEOARTHRITIS,

2290
01:23:25,196 --> 01:23:28,566
EPILEPSY AND PAIN. WHAT WE THEN

2291
01:23:28,566 --> 01:23:32,837
SAID SECONDARY FINDING WHICH IS

2292
01:23:32,837 --> 01:23:34,172
IMPORTANT AS FIRST STUDY TO LOOK

2293
01:23:34,172 --> 01:23:38,409
AT DEPRESSION ANXIETY IN CP IN

2294
01:23:38,409 --> 01:23:40,745
ADULTS WE FOUND HAVING CEREBRAL

2295
01:23:40,745 --> 01:23:43,815
PALSY IN IN NO CO-MORBID

2296
01:23:43,815 --> 01:23:45,049
INTELLECTUAL DISABILITY SO FOLKS

2297
01:23:45,049 --> 01:23:48,152
WITH CP WHO HAD NO CO-OCCURRING

2298
01:23:48,152 --> 01:23:49,787
INTELLECTUAL DISABILITY AT

2299
01:23:49,787 --> 01:23:52,757
HIGHER RISK OF INCIDENT

2300
01:23:52,757 --> 01:23:53,391
DEPRESSION ANXIETY AND MATCHED

2301
01:23:53,391 --> 01:23:58,329
CONTROLS.  LED BY DAN WHITNEY WE

2302
01:23:58,329 --> 01:23:59,897
RECOLLATED THIS STUDY HERE IN

2303
01:23:59,897 --> 01:24:00,698
THE UNITED STATES PUBLISHED

2304
01:24:00,698 --> 01:24:04,002
COUPLE OF YEARS AGO IN A FAIRLY

2305
01:24:04,002 --> 01:24:09,640
LARGE COHORT BUT WANTED TO

2306
01:24:09,640 --> 01:24:11,275
EXPAND SELECTION OF VARIABLES SO

2307
01:24:11,275 --> 01:24:12,677
PREVALENCE OF MENTAL HEALTH

2308
01:24:12,677 --> 01:24:14,312
DISORDERS COMPARED WITH CP

2309
01:24:14,312 --> 01:24:15,713
COPIED TO ADULTS WITHOUT C, P.

2310
01:24:15,713 --> 01:24:17,315
YOU CAN SEE THE DIFFERENT

2311
01:24:17,315 --> 01:24:18,583
CATEGORIES OF PSYCHIATRIC

2312
01:24:18,583 --> 01:24:20,184
DISORDERS THAT WE LOOKED AT. 

2313
01:24:20,184 --> 01:24:22,520
WHAT WE FOUND WAS THAT ADULT FOR

2314
01:24:22,520 --> 01:24:24,822
MEN AND WOMEN ADULTS WITH CP

2315
01:24:24,822 --> 01:24:27,525
ALONE HAD MUCH HIGHER RISK OF

2316
01:24:27,525 --> 01:24:29,794
DEVELOPING ALL OF THE

2317
01:24:29,794 --> 01:24:31,129
PREVALENCE, ALL THE PSYCHIATRIC

2318
01:24:31,129 --> 01:24:35,133
AN PSYCHOLOGICAL DISORDERS, BUT

2319
01:24:35,133 --> 01:24:36,100
INTERESTINGLY AND DISPARATE FROM

2320
01:24:36,100 --> 01:24:37,835
THE PREVIOUS STUDY WE FOUND

2321
01:24:37,835 --> 01:24:41,572
ADULTS WITH CP FOR MEN AND WOMEN

2322
01:24:41,572 --> 01:24:43,775
WHO HAD CO-OCCURRING

2323
01:24:43,775 --> 01:24:44,909
NEURODEVELOPMENTAL CONDITIONS,

2324
01:24:44,909 --> 01:24:48,012
WHICH COULD HAVE INCLUDED AUT 

2325
01:24:48,012 --> 01:24:49,213
AUTISM, EPILEPSY OR OTHER

2326
01:24:49,213 --> 01:24:50,782
INTELLECTUAL DISORDERS HAD

2327
01:24:50,782 --> 01:24:55,653
INCREASE RISK FOR COMING

2328
01:24:55,653 --> 01:24:56,821
PSYCHIATRIC MORBIDITIES SO HERE

2329
01:24:56,821 --> 01:24:59,390
IN THE UNITED STATES FOLKS WITH

2330
01:24:59,390 --> 01:25:01,692
CP AND OKAY CO-OCCURRING

2331
01:25:01,692 --> 01:25:03,361
CONDITIONS AT RISK FOR

2332
01:25:03,361 --> 01:25:04,529
DEVELOPING MENTAL HEALTH

2333
01:25:04,529 --> 01:25:05,630
DISORDERS SIGNIFICANTLY GREATER

2334
01:25:05,630 --> 01:25:08,266
THAN ADULTS WITHOUT CP. THIRD

2335
01:25:08,266 --> 01:25:09,667
STUDY WE COMBINED COHORT OF

2336
01:25:09,667 --> 01:25:13,404
ADULTS WITH CP AND SPINA BIFIDA

2337
01:25:13,404 --> 01:25:15,339
LOOK AT INCIDENCE, PSYCHOLOGICAL

2338
01:25:15,339 --> 01:25:17,241
MORBIDITY AND FOUND THAT ACROSS

2339
01:25:17,241 --> 01:25:19,811
A GREAT NUMBER OF PSYCHOLOGICAL

2340
01:25:19,811 --> 01:25:23,781
DISORDERS ADULTS WITH CP OR

2341
01:25:23,781 --> 01:25:26,117
SPINA BIFIDA AFTER ADJUSTING

2342
01:25:26,117 --> 01:25:27,018
BASICALLY ADJUST FOR HAD HIGHER

2343
01:25:27,018 --> 01:25:30,288
RISK TO DEVELOPING THESE ARE

2344
01:25:30,288 --> 01:25:31,422
DISEASE FREE SURVIVAL OR

2345
01:25:31,422 --> 01:25:35,960
INCIDENCE OF THESE OUTCOMES.

2346
01:25:35,960 --> 01:25:37,528
AFTER ANYBODY WITH THE

2347
01:25:37,528 --> 01:25:43,701
CONDITIONS AT BASELINE ON

2348
01:25:43,701 --> 01:25:44,836
INSURED BENEFICIARY CLAIM. SO

2349
01:25:44,836 --> 01:25:46,504
INTERESTING FINDINGS AND ARE

2350
01:25:46,504 --> 01:25:47,472
EXTREMELY IMPORTANT IN THE

2351
01:25:47,472 --> 01:25:48,773
CONTEXT OF TRYING TO EARLY

2352
01:25:48,773 --> 01:25:51,175
SCREEN FOR MENTAL HEALTH

2353
01:25:51,175 --> 01:25:52,877
DISORDERS. AND PROBABLY EVEN IN

2354
01:25:52,877 --> 01:25:55,847
CHILDHOOD FOR THIS POPULATION.  

2355
01:25:55,847 --> 01:25:59,083
SO GIVEN PAIN IS ASSOCIATED WITH

2356
01:25:59,083 --> 01:26:01,519
CHRONIC DISEASE, INCLUDING

2357
01:26:01,519 --> 01:26:02,487
MUSCULOSKELETAL DISORDERS AND

2358
01:26:02,487 --> 01:26:03,321
PSYCHOLOGIC MORBIDITY WE WANTED

2359
01:26:03,321 --> 01:26:05,756
TO UNDERSTAND WHAT THE PHENOTYPE

2360
01:26:05,756 --> 01:26:07,759
WAS IN CP AND ALSO WITH NATIONAL

2361
01:26:07,759 --> 01:26:09,060
PRESCRIBING PATTERN FOR OPIOIDS

2362
01:26:09,060 --> 01:26:15,133
ARE.  SO WE DID STUDY AT PAIN

2363
01:26:15,133 --> 01:26:16,534
TAXONOMY FOR THOSE IN THE

2364
01:26:16,534 --> 01:26:18,970
AUDIENCE NOT STUDY PAIN, THIS

2365
01:26:18,970 --> 01:26:22,507
WAS AN EXTENSION OF MY AREA OF

2366
01:26:22,507 --> 01:26:24,342
EXPERTISE TOO. PREVIOUS STUDIES

2367
01:26:24,342 --> 01:26:26,811
RELY ON IN SPECIFICALLY DEVOTED

2368
01:26:26,811 --> 01:26:28,179
TIME TO UNDERSTANDING

2369
01:26:28,179 --> 01:26:29,046
NOCICEPTIVE PAIN IN THIS

2370
01:26:29,046 --> 01:26:31,082
POPULATION SO THAT IS PERIPHERAL

2371
01:26:31,082 --> 01:26:34,552
PAIN OR MUSCULOSKELETAL PAIN

2372
01:26:34,552 --> 01:26:36,554
THAT ARISE FROM FISCAL DAMAGE OR

2373
01:26:36,554 --> 01:26:37,622
OVERVIEWS. BUT IT MAY BE WELL

2374
01:26:37,622 --> 01:26:41,893
THAT FOLKS WITH CP HAVE RISK FOR

2375
01:26:41,893 --> 01:26:43,895
NEUROPA THICK AND NOSEY PLASTIC

2376
01:26:43,895 --> 01:26:48,099
PAIN, THE LAST BEING NEWER

2377
01:26:48,099 --> 01:26:50,635
DESIGNATION CENTRAL NERVOUS

2378
01:26:50,635 --> 01:26:52,804
SYSTEM THAT MANIFESTS AS

2379
01:26:52,804 --> 01:26:54,372
UNPLEASANT SENSORY OR EMOTIONAL

2380
01:26:54,372 --> 01:26:55,673
EXPERIENCE ASSOCIATED WITH

2381
01:26:55,673 --> 01:26:57,241
ACTUAL POTENTIAL TISSUE DAMAGE

2382
01:26:57,241 --> 01:26:58,743
DESCRIBING TERMS OF SUCH. SO

2383
01:26:58,743 --> 01:27:00,678
THIS IS RECENTLY DESIGNATED FROM

2384
01:27:00,678 --> 01:27:01,746
INTERNATIONAL ASSOCIATION FOR

2385
01:27:01,746 --> 01:27:05,016
STUDY OF PAIN TASK FORCE. SO

2386
01:27:05,016 --> 01:27:07,652
STUDY WE TRIED TO UNCTION

2387
01:27:07,652 --> 01:27:09,220
PHENOTYPE PAIN IN CP AND SO WHAT

2388
01:27:09,220 --> 01:27:11,656
WE DID IS WE AGAIN USED A LARGE

2389
01:27:11,656 --> 01:27:14,625
COYOU ARE THE WHO OF ADULTS WITH

2390
01:27:14,625 --> 01:27:15,693
CP AND COMBINE WITH SPINA BIFIDA

2391
01:27:15,693 --> 01:27:17,428
COMPARED TO ADULTS WITHOUT CP

2392
01:27:17,428 --> 01:27:19,330
AND FOUND THAT ADULTS WITH CP

2393
01:27:19,330 --> 01:27:20,865
HAD HIGHER PREVALENCE OF ANY

2394
01:27:20,865 --> 01:27:23,568
PAIN DISORDERS AND PAIN

2395
01:27:23,568 --> 01:27:25,203
MULTI-MORBIDITY COMPARED TO

2396
01:27:25,203 --> 01:27:27,371
ADULTS WITHOUT CP OR SPINA

2397
01:27:27,371 --> 01:27:31,108
BIFIDA. WHAT WE FOUND FOR

2398
01:27:31,108 --> 01:27:31,776
MS. PREVATTE: LENS FOR

2399
01:27:31,776 --> 01:27:33,544
NOCICEPTIVE PAIN, PERIPHERAL

2400
01:27:33,544 --> 01:27:36,547
PAIN MUCH HIGHER BUT ALSO FOR

2401
01:27:36,547 --> 01:27:38,649
CENTRALIZE OR NOSEY PLASTIC

2402
01:27:38,649 --> 01:27:41,686
PAIN, AND NEUROPATHIC PAIN. THE

2403
01:27:41,686 --> 01:27:42,820
PHENOTYPE IS IMPORTANT AND

2404
01:27:42,820 --> 01:27:44,488
SOMETHING THAT I THINK THAT WE

2405
01:27:44,488 --> 01:27:45,423
SHOULD TRY TO UNDERSTAND BETTER

2406
01:27:45,423 --> 01:27:47,525
IN THIS POPULATION SO THAT

2407
01:27:47,525 --> 01:27:50,761
TREATMENTS CAN BE TAILORED

2408
01:27:50,761 --> 01:27:52,530
SPECIFIC PAIN PHENOTYPES. AND

2409
01:27:52,530 --> 01:27:55,666
EVEN AFTER ADJUSTED FOR VARIOUS

2410
01:27:55,666 --> 01:27:58,869
THINGS WE BECOME ADULTS WITH CPR

2411
01:27:58,869 --> 01:28:00,705
SPINA THE BIFIDA AT RISK OF

2412
01:28:00,705 --> 01:28:02,340
DEVELOPING NOCICEPTIVE AND

2413
01:28:02,340 --> 01:28:06,143
NEUROPATHIC PAIN. WE THEN DID

2414
01:28:06,143 --> 01:28:07,845
DEEPER DIVE PAIN PHENOTYPING

2415
01:28:07,845 --> 01:28:09,814
STUDY AT MICHIGAN TO IDENTIFY

2416
01:28:09,814 --> 01:28:13,317
PAIN TYPE AMONG PEOPLE WITH CP. 

2417
01:28:13,317 --> 01:28:16,387
WE SELECTED DATA FROM 71 ADULTS

2418
01:28:16,387 --> 01:28:19,257
HERE, AND FOUND THAT FOR LARGE

2419
01:28:19,257 --> 01:28:22,493
PERCENTAGE OF PEOPLE WHO HAD CP

2420
01:28:22,493 --> 01:28:24,729
THEY HAD 39% HAVE ONLY

2421
01:28:24,729 --> 01:28:29,233
NOCICEPTIVE OR PERIPHERAL PAIN

2422
01:28:29,233 --> 01:28:30,735
MECHANISMS FOR 34% THERE WAS

2423
01:28:30,735 --> 01:28:35,006
EVIDENCE NORMOSHY PLASTIC BUT

2424
01:28:35,006 --> 01:28:37,909
JUST NOSEY PLASTIC PAIN. 11% HAD

2425
01:28:37,909 --> 01:28:39,577
NEUROPATHIC PAIN ONLY AND 16%

2426
01:28:39,577 --> 01:28:41,646
HAD EVIDENCE OF NEUROPATHIC AND

2427
01:28:41,646 --> 01:28:43,681
NOSEY PLASTIC PAIN. SO LARGE

2428
01:28:43,681 --> 01:28:45,783
PERCENTAGE OF ADULTS WITH CP WHO

2429
01:28:45,783 --> 01:28:49,287
HAD PAIN ARE COMING FROM OTHER

2430
01:28:49,287 --> 01:28:50,688
MECHANISMS THAN JUST PERIPHERAL

2431
01:28:50,688 --> 01:28:52,356
WHAT WE CONSIDER TO BE THE

2432
01:28:52,356 --> 01:28:57,628
CLASSIC PAIN IN CP WHICH IS

2433
01:28:57,628 --> 01:28:58,963
MUSCULOSKELETAL ORDER. SOME OF

2434
01:28:58,963 --> 01:29:00,798
THE SECONDARY FINDINGS OF THIS

2435
01:29:00,798 --> 01:29:02,366
PARTICULAR STUDY WHICH IS

2436
01:29:02,366 --> 01:29:04,402
IMPORTANT IS SCORING POSITIVE

2437
01:29:04,402 --> 01:29:07,371
FOR NOSEY PALACIC PAIN PREDICTED

2438
01:29:07,371 --> 01:29:08,572
SIGNIFICANTLY WORSE

2439
01:29:08,572 --> 01:29:09,540
SELF-REPORTED DEPRESSION

2440
01:29:09,540 --> 01:29:11,042
PERCEIVED STRESS INVOLVING THE

2441
01:29:11,042 --> 01:29:11,742
EFFECTS OF ACTUAL PAIN

2442
01:29:11,742 --> 01:29:14,812
INTENSITY. BASICALLY SUGGESTS

2443
01:29:14,812 --> 01:29:17,448
THAT TYPE OF PAIN IS HIGHLY

2444
01:29:17,448 --> 01:29:20,051
VARIABLE AMONG CP MAY ARISE

2445
01:29:20,051 --> 01:29:22,386
MULTIPLE MECHANISMS BUT ALSO

2446
01:29:22,386 --> 01:29:23,554
NOCICEPTIVE PAIN THOUGH COMMON

2447
01:29:23,554 --> 01:29:25,489
IN CP PAIN ARISING FROM

2448
01:29:25,489 --> 01:29:27,391
NEUROPATHIC OR NOSEY PLASTIC

2449
01:29:27,391 --> 01:29:29,093
MECHANISM CORRELATES WITH PEER

2450
01:29:29,093 --> 01:29:30,227
HEALTH RELATED QUALITY OF LIFE

2451
01:29:30,227 --> 01:29:37,702
OUTCOME. REALLY CONSIDERING WHAT

2452
01:29:37,702 --> 01:29:39,770
IS AFFECTING QUALITY OF LIFE, IT

2453
01:29:39,770 --> 01:29:40,604
IS IMPORTANT TO UNDERSTAND THE

2454
01:29:40,604 --> 01:29:45,142
MECHANISM OF PAIN.  BECAUSE IT

2455
01:29:45,142 --> 01:29:46,544
IS SO RELEVANT AT THIS POINT IN

2456
01:29:46,544 --> 01:29:48,946
TIME ESPECIALLY THE UNITED

2457
01:29:48,946 --> 01:29:50,614
STATES, ONE WHAT ARE THE OPIOID

2458
01:29:50,614 --> 01:29:51,349
PRESCRIBING PATTERNS IN THE

2459
01:29:51,349 --> 01:29:52,950
U.S.? USING A LARGE COHORT OF

2460
01:29:52,950 --> 01:29:55,519
ADULTS WITH CP OR SPINA BIFIDA

2461
01:29:55,519 --> 01:29:57,655
WE LOOK AT ORAL MORPHINE

2462
01:29:57,655 --> 01:29:59,857
EQUIVALENT PRESCRIPTION PATTERNS

2463
01:29:59,857 --> 01:30:02,293
AND DID MULTI-VARIABLE LOGISTIC

2464
01:30:02,293 --> 01:30:05,329
REGRESSION MODELING AND ANALYST

2465
01:30:05,329 --> 01:30:08,466
ASSOCIATION BETWEEN HAVING CP OR

2466
01:30:08,466 --> 01:30:10,134
SPINA BIFIDA AND HAVING NO PAIN

2467
01:30:10,134 --> 01:30:13,571
ISOLATED PAIN AND CHRONIC

2468
01:30:13,571 --> 01:30:15,606
OVERLAPPING PAI PAIN. WE FOUND S

2469
01:30:15,606 --> 01:30:19,043
WITH CP OR SPINA BIFIDA

2470
01:30:19,043 --> 01:30:20,578
REGARDLESS OF PAIN HAD HIGHER

2471
01:30:20,578 --> 01:30:23,013
PAIN PATTERNS OF THEIR ORAL

2472
01:30:23,013 --> 01:30:24,448
MORPHINE E Q I LENT ACROSS PAIN

2473
01:30:24,448 --> 01:30:26,050
ISOLATED PAIN AND CHRONIC

2474
01:30:26,050 --> 01:30:29,387
OVERLAPPING PAIN. YOU CAN SEE

2475
01:30:29,387 --> 01:30:33,758
THE GRAPH LOWEST MORPHINE

2476
01:30:33,758 --> 01:30:35,693
EQUIVALENT PRESCRIPTION PATTERNS

2477
01:30:35,693 --> 01:30:37,928
WERE NO PAIN AND HIGHEST NO

2478
01:30:37,928 --> 01:30:38,629
SURPISE AMONG CASES OF PEOPLE

2479
01:30:38,629 --> 01:30:41,298
WITH CP OR SPINA BIFIDA WITH

2480
01:30:41,298 --> 01:30:47,638
MULTIPLE PAIN UP HERE.  CLEARLY

2481
01:30:47,638 --> 01:30:50,141
PRECEDENT FOR USING ORAL TIGHT

2482
01:30:50,141 --> 01:30:51,842
MEDICATION FOR PAIN MANAGEMENT

2483
01:30:51,842 --> 01:30:54,578
ESPECIALLY POST SURGERY BUT HAVE

2484
01:30:54,578 --> 01:30:57,815
A BETTER UNDERSTANDING OF THE

2485
01:30:57,815 --> 01:30:59,784
EFFECT OF ESPECIALLY OPIATES IN

2486
01:30:59,784 --> 01:31:01,419
THE CONTEXT OF MENTAL HEALTH IN

2487
01:31:01,419 --> 01:31:02,953
THIS POPULATION. SO WE HAVE TO

2488
01:31:02,953 --> 01:31:04,522
EXTEND OUR WORK TO UNDERSTAND

2489
01:31:04,522 --> 01:31:06,290
LONG TERM CONSEQUENCE OF OPIOID

2490
01:31:06,290 --> 01:31:08,058
USE IN CP AS WELL AS

2491
01:31:08,058 --> 01:31:09,527
EFFECTIVENESS OF ALTERNATIVE

2492
01:31:09,527 --> 01:31:12,196
THERAPIES SUCH AS SLEEP

2493
01:31:12,196 --> 01:31:13,931
INTERVENTION, COGNITIVE BEHAVIOR

2494
01:31:13,931 --> 01:31:15,199
THERAPY, OTHER THINGS BUT

2495
01:31:15,199 --> 01:31:18,302
PREVENTABLE SCREENING TO REDUCE

2496
01:31:18,302 --> 01:31:20,371
PREVENTSABLE MORTALITY

2497
01:31:20,371 --> 01:31:21,672
MORTALITY, REDUCE HEALTHCARE

2498
01:31:21,672 --> 01:31:25,276
DISPARITIES ACROSS THE LIFE

2499
01:31:25,276 --> 01:31:25,910
SPAN, DEVELOPING TELEHEALTH

2500
01:31:25,910 --> 01:31:26,644
STRATEGIES TO REACH PATIENTS

2501
01:31:26,644 --> 01:31:28,179
ESPECIALLY WITH POOR ACCESS BUT

2502
01:31:28,179 --> 01:31:31,348
ESPECIALLY MENTAL HEALTH. THE

2503
01:31:31,348 --> 01:31:32,616
GOOD NEWS IS IS THAT THE

2504
01:31:32,616 --> 01:31:34,752
LANDSCAPE OF LITERATURE

2505
01:31:34,752 --> 01:31:37,621
PERTAINING TO LIFE SPAN IN CP IS

2506
01:31:37,621 --> 01:31:40,324
GROWN UP, LANDSCAPE OF

2507
01:31:40,324 --> 01:31:42,660
LITERATURE FROM WAY BACK IN 1953

2508
01:31:42,660 --> 01:31:44,895
UP TO END OF LAST YEAR, NUMBER

2509
01:31:44,895 --> 01:31:48,132
OF PAPERS PUBLISHED HAS REALLY

2510
01:31:48,132 --> 01:31:51,168
INCREASED AND CONTINUES TO

2511
01:31:51,168 --> 01:31:52,503
INCREASE IN 2022. BEFORE I

2512
01:31:52,503 --> 01:31:54,839
FINISH UP I WANT TO SHOW THE

2513
01:31:54,839 --> 01:31:58,476
CURRENT FUNDING SCHEME FOR CP.

2514
01:31:58,476 --> 01:32:00,611
THIS IS JUST SOME UNPUBLISHED

2515
01:32:00,611 --> 01:32:02,079
WORK THAT MEDICAL STUDENTS IS

2516
01:32:02,079 --> 01:32:04,348
HELPING ME WITH, SO THE HIGHEST

2517
01:32:04,348 --> 01:32:06,183
FUNDING PERCENTAGE IN CP IS

2518
01:32:06,183 --> 01:32:08,319
PERTAINING TO TREATMENTS AND

2519
01:32:08,319 --> 01:32:10,087
EARLY INTERVENTIONS, AND THEN

2520
01:32:10,087 --> 01:32:12,823
LASTLY NUMBER 6 YOU CAN SEE IN

2521
01:32:12,823 --> 01:32:14,625
GREEN LIFE SPANISH SHOES. THESE

2522
01:32:14,625 --> 01:32:16,360
ARE JUST PERCENT OF FUNDING TO

2523
01:32:16,360 --> 01:32:19,029
OVERALL FUNDING IN CP FROM 2014

2524
01:32:19,029 --> 01:32:21,432
TO 2021. RANGING ANYWHERE FROM

2525
01:32:21,432 --> 01:32:24,802
LESS THAN 1% TO 3%.%.  FROM THAK

2526
01:32:24,802 --> 01:32:26,504
YOU VERY MUCH. HAPPY TO TAKE

2527
01:32:26,504 --> 01:32:28,739
QUESTIONS BY EMAIL AND THEN ALSO

2528
01:32:28,739 --> 01:32:30,274
LIKE TO ACKNOWLEDGE MY

2529
01:32:30,274 --> 01:32:34,178
COLLEAGUES ESPECIALLY DR.

2530
01:32:34,178 --> 01:32:36,480
WHITNEY ALONG WITH THE OTHER

2531
01:32:36,480 --> 01:32:38,682
MEMBERS OF THE ADULT PEDIATRIC

2532
01:32:38,682 --> 01:32:41,118
ONSET FACILITY GROUP AND MANY

2533
01:32:41,118 --> 01:32:42,920
OTHER PEOPLE I AM NOT ABLE TO

2534
01:32:42,920 --> 01:32:44,421
HIGHLIGHT VERBALLY TODAY. THANK

2535
01:32:44,421 --> 01:32:45,823
YOU VERY MUCH. ALSO LIKE TO

2536
01:32:45,823 --> 01:32:48,559
ACKNOWLEDGE MY FUNDERS AND THANK

2537
01:32:48,559 --> 01:32:50,194
YOU VERY MUCH. LOOK FORWARD TO

2538
01:32:50,194 --> 01:32:53,397
INTERACTING WITH Y'ALL.

2539
01:32:53,397 --> 01:32:55,866
>> HI. THANK YOU FOR
WATCHING

2540
01:32:55,866 --> 01:32:58,469
THIS TALK TODAY. MAY NAME IS

2541
01:32:58,469 --> 01:33:01,539
ZACH VESOULIS, NEODAY TOLL GIST

2542
01:33:01,539 --> 01:33:03,207
AT WASHINGTON UNIVERSITY ST.

2543
01:33:03,207 --> 01:33:07,645
LOUIS. WE WILL DISCUSS RARE

2544
01:33:07,645 --> 01:33:08,512
RACIAL DISPARITIES IN CEREBRAL

2545
01:33:08,512 --> 01:33:11,282
PALSY. I HAVE NO FINANCIAL

2546
01:33:11,282 --> 01:33:13,450
DISCLOSURES NO DEVICES OR DRUGS

2547
01:33:13,450 --> 01:33:15,653
AND THIS IS A LIST OF SUPPORTERS

2548
01:33:15,653 --> 01:33:17,888
FOR MY VERGE. NO MYSTERY O THE

2549
01:33:17,888 --> 01:33:19,757
AUDIENCE PREMATURE BIRTH IS

2550
01:33:19,757 --> 01:33:21,191
INCREASING PROBLEM IN THE UNITED

2551
01:33:21,191 --> 01:33:23,093
STATES. AND HAS BEEN INCREASING

2552
01:33:23,093 --> 01:33:25,629
OVER THE PAST DECADES CURRENTLY

2553
01:33:25,629 --> 01:33:28,599
AFFECTS ONE AND TEN BIRTHS. IT

2554
01:33:28,599 --> 01:33:31,468
ALSO IS COMMON CAUSE OF

2555
01:33:31,468 --> 01:33:34,872
MORTALITY AND IS SECOND MOST TO

2556
01:33:34,872 --> 01:33:36,807
CONGENITAL ANOMALIES.

2557
01:33:36,807 --> 01:33:38,509
COMPOUNDING THIS IS UNEVEN

2558
01:33:38,509 --> 01:33:40,811
DISTRIBUTION OF PREMATURITY,

2559
01:33:40,811 --> 01:33:42,746
AFRICAN AMERICAN WOMEN HAVE 50%

2560
01:33:42,746 --> 01:33:45,049
HIGHER INCIDENCE OF PRE-TERM

2561
01:33:45,049 --> 01:33:46,584
BIRTH COMPARED TO WHITE WEAPON

2562
01:33:46,584 --> 01:33:48,319
WOMEN. THIS IS IMPORTANT BECAUSE

2563
01:33:48,319 --> 01:33:52,523
PREMATURITY COMES WITH A LOT OF

2564
01:33:52,523 --> 01:33:53,457
COMPLICATIONS. THE ONE THAT I'M

2565
01:33:53,457 --> 01:33:56,293
GOING TO FOCUS ON TODAY IS BRAIN

2566
01:33:56,293 --> 01:33:57,294
INJURY. THERE ARE THREE FORMS OF

2567
01:33:57,294 --> 01:34:01,665
BRAIN INJURY THAT ARE

2568
01:34:01,665 --> 01:34:03,734
CLASSICALLY WITH HOE HEMORRHAGE

2569
01:34:03,734 --> 01:34:05,769
INTO THE VENTRICULAR SPACE IN

2570
01:34:05,769 --> 01:34:10,007
FIRST THREE DAYS, THERE'S

2571
01:34:10,007 --> 01:34:10,774
PERIVENTRICULAR WHITE MATTER

2572
01:34:10,774 --> 01:34:13,077
INJURY WHICH OCCURS OVER LONGER

2573
01:34:13,077 --> 01:34:17,314
PERIODS OF TIME. MORE AS CHRONIC

2574
01:34:17,314 --> 01:34:18,582
DISEASE.  CEREBRAL HEMORRHAGE

2575
01:34:18,582 --> 01:34:20,584
ANOTHER FORM OF HEMORRHAGE WHICH

2576
01:34:20,584 --> 01:34:22,386
OCCURS EARLY IN ACUTE COURSE.

2577
01:34:22,386 --> 01:34:24,321
THERE HAS BEEN A LOT OF STUDY IN

2578
01:34:24,321 --> 01:34:25,756
RESEARCH OF ALL THESE BRAIN

2579
01:34:25,756 --> 01:34:27,558
INJURY AND WHILE EACH HAS ITS

2580
01:34:27,558 --> 01:34:28,892
OWN NUANCES IN TERMS OF

2581
01:34:28,892 --> 01:34:30,494
MECHANISM, HYPOXIA IS A COMMON

2582
01:34:30,494 --> 01:34:34,431
FACTOR THAT OCCURS ACROSS ALL

2583
01:34:34,431 --> 01:34:36,734
FORMS OF PRE-TERM BRAIN INJURY

2584
01:34:36,734 --> 01:34:38,068
U. INTRAVENTRICULAR HEMORRHAGE

2585
01:34:38,068 --> 01:34:40,971
IS SHORT TERM OR ACUTE HYPOXIA.

2586
01:34:40,971 --> 01:34:43,307
YOU CAN SEE BOTTOM HERE FIGURE P

2587
01:34:43,307 --> 01:34:46,644
FROM PAPER A FEW YEARS AGO LOOK

2588
01:34:46,644 --> 01:34:49,413
AT HYPOXIA BURDEN WHAT

2589
01:34:49,413 --> 01:34:50,648
PERCENTAGE OF TIME WITH PULSE

2590
01:34:50,648 --> 01:34:52,349
OKAY SIMILAR TEAR AND BABIES

2591
01:34:52,349 --> 01:34:57,955
WITH SEVERE INTRAVENTRICULAR

2592
01:34:57,955 --> 01:35:00,791
HEMORRHAGE WITH OXYGEN

2593
01:35:00,791 --> 01:35:02,259
SATURATION BELOW -- WHITE MATTER

2594
01:35:02,259 --> 01:35:03,827
IS ASSOCIATE WITH CHRONIC

2595
01:35:03,827 --> 01:35:05,129
HYPOXIA. ON THE LEFT IS A FIGURE

2596
01:35:05,129 --> 01:35:06,997
FROM A PAPER LAST YEAR WHERE WE

2597
01:35:06,997 --> 01:35:10,034
LOOK AT OXYGEN EXTRACTION BY THE

2598
01:35:10,034 --> 01:35:12,069
BRAIN. THIS IS HOW MUCH OXYGEN

2599
01:35:12,069 --> 01:35:14,505
IS DELIVERED EXTRACTD BY THE

2600
01:35:14,505 --> 01:35:16,640
BRAIN WITH CONSIDER BEING OVERE

2601
01:35:16,640 --> 01:35:18,742
TRACTION PUTS BRAIN AT RISK FOR

2602
01:35:18,742 --> 01:35:20,444
ISCHEMIA. YOU CAN SEE HERE THIS

2603
01:35:20,444 --> 01:35:24,782
IS THE FIRST TWO MONTHS OF PAY

2604
01:35:24,782 --> 01:35:26,016
BYES LIVES WITH DOT REPRESENTING

2605
01:35:26,016 --> 01:35:26,917
INDIVIDUAL RECORDING ON

2606
01:35:26,917 --> 01:35:28,318
INDIVIDUAL DAY, BABY WHOSE ARE

2607
01:35:28,318 --> 01:35:30,654
ULTIMATELY DIAGNOSE WITH WHITE

2608
01:35:30,654 --> 01:35:34,091
MATTER HAD HIGHER OXYGEN

2609
01:35:34,091 --> 01:35:35,392
EXTRACTION FOR MONTHS AFTER

2610
01:35:35,392 --> 01:35:36,493
BIRTH OUT PRESIDENTING THEM AT

2611
01:35:36,493 --> 01:35:39,997
RISK OF CRITICALs SCHEMEIA.

2612
01:35:39,997 --> 01:35:41,598
CEREBELLAR HEMORRHAGE IS NOT AS

2613
01:35:41,598 --> 01:35:44,735
WELL STUDIED AS WHITE MATTER

2614
01:35:44,735 --> 01:35:46,103
INJURY AND BUT ALSO HAS WELL

2615
01:35:46,103 --> 01:35:47,571
KNOWN ASSOCIATION WITH SEVERE

2616
01:35:47,571 --> 01:35:48,806
LUNG DISEASE AND INCREASING

2617
01:35:48,806 --> 01:35:51,341
DEGREES OF PREMATURITY H AGAIN

2618
01:35:51,341 --> 01:35:54,445
WHICH COME BACK TO HYPOXIA. AS

2619
01:35:54,445 --> 01:35:57,848
PRE-TERM BIRTH IS NOT EVENLY

2620
01:35:57,848 --> 01:36:00,150
DISTRIBUTED ACROSS DEMOGRAPHIC

2621
01:36:00,150 --> 01:36:02,319
GROUPS CEREBRAL PALSY NOT

2622
01:36:02,319 --> 01:36:05,889
EITHER. A PAPER PUBLISHED

2623
01:36:05,889 --> 01:36:08,192
AFRICAN AMERICAN ARE 29% MORE

2624
01:36:08,192 --> 01:36:10,027
LIKELY TO BE DIAGNOSED WITH

2625
01:36:10,027 --> 01:36:10,627
CEREBRAL PALSY THAN WHITE

2626
01:36:10,627 --> 01:36:14,965
INFANTS. 50% MORE LIKELY TO HAVE

2627
01:36:14,965 --> 01:36:18,602
SPASTIC CEREBRAL PALSY.  ALL

2628
01:36:18,602 --> 01:36:20,637
FOUND SIMILAR DIFFERENCE, USING

2629
01:36:20,637 --> 01:36:22,272
GROSS MOTOR FUNCTION

2630
01:36:22,272 --> 01:36:23,107
CLASSIFICATION SYSTEM THAT

2631
01:36:23,107 --> 01:36:25,676
AFRICAN AMERICAN INFANTS MORE

2632
01:36:25,676 --> 01:36:29,680
OFTEN HAVE STAGE 4 OR 5 WHEN

2633
01:36:29,680 --> 01:36:33,217
MOTOR OUTCOMES ARE EXAMINED.  

2634
01:36:33,217 --> 01:36:34,084
THE EXACT MECHANISM OF

2635
01:36:34,084 --> 01:36:35,419
DIFFERENCE IS NOT ENTIRELY

2636
01:36:35,419 --> 01:36:37,221
CLEAR, AND IS COMPLICATED. BUT

2637
01:36:37,221 --> 01:36:39,957
CAN BE DIVIDED TO TWO AREAS.

2638
01:36:39,957 --> 01:36:43,894
FIRST INTRINSIC FACTORS. ON SOME

2639
01:36:43,894 --> 01:36:45,395
LEVEL MATHEMATICAL. AFRICAN

2640
01:36:45,395 --> 01:36:46,964
AMERICAN WOMEN HAVE MORE

2641
01:36:46,964 --> 01:36:48,999
PRE-TERM BABIES SO THERE WILL BE

2642
01:36:48,999 --> 01:36:51,335
MORE AFRICAN AMERICAN WOMEN

2643
01:36:51,335 --> 01:36:52,336
INFANTS WITH CEREBRAL PALSY.

2644
01:36:52,336 --> 01:36:54,037
WILL IS ALSO A CONCERN ABOUT

2645
01:36:54,037 --> 01:36:58,342
TOXIC STRESS DURING PREGNANCY.  

2646
01:36:58,342 --> 01:36:59,610
FACTORS RELATED TO HOUSING

2647
01:36:59,610 --> 01:37:02,346
QUALITY, NUTRITION, POLLUTION,

2648
01:37:02,346 --> 01:37:03,480
AND OTHER FORMS OF STRESS

2649
01:37:03,480 --> 01:37:05,616
INCREASE RISK OF PRE-TERM BIRTH

2650
01:37:05,616 --> 01:37:06,950
AND NEURODEVELOPMENTAL OUTCOMES

2651
01:37:06,950 --> 01:37:08,318
AND THAT IS NOT EVENLY

2652
01:37:08,318 --> 01:37:09,386
DISTRIBUTED IN THE THE UNITED

2653
01:37:09,386 --> 01:37:13,524
STATES. THERE ARE EXTRINSIC

2654
01:37:13,524 --> 01:37:15,526
FACTORS MODIFIED IN THE NICU

2655
01:37:15,526 --> 01:37:19,396
ITSELF, DIFFERENCES IN NICU CARE

2656
01:37:19,396 --> 01:37:20,664
BY RACE OR POORLY CALIBRATED

2657
01:37:20,664 --> 01:37:23,000
MEDICAL DEVICES OR STANDARDIZED

2658
01:37:23,000 --> 01:37:24,935
RISK SCORES THAT DON'T TAKE RACE

2659
01:37:24,935 --> 01:37:26,804
INTO ACCOUNT WHICH POTENTIALLY

2660
01:37:26,804 --> 01:37:29,273
CONTRIBUTE TO BRAIN INJURY AS

2661
01:37:29,273 --> 01:37:31,475
WELL AS CEREBRAL PALSY OUTCOMES 

2662
01:37:31,475 --> 01:37:34,711
SO THERE ARE HAVE BEEN LARGE

2663
01:37:34,711 --> 01:37:35,746
EPIDEMIOLOGIC OR POPULATION

2664
01:37:35,746 --> 01:37:37,981
LEVEL STUDIES, THAT HAVE

2665
01:37:37,981 --> 01:37:40,017
SUGGESTED THAT AFRICAN AMERICAN

2666
01:37:40,017 --> 01:37:41,418
PRE-TERM INFANTS HAVE SURVIVAL

2667
01:37:41,418 --> 01:37:43,020
ADVANTAGES OVER WHITE AND

2668
01:37:43,020 --> 01:37:44,955
HISPANIC INFANTS. TAKEN AS A

2669
01:37:44,955 --> 01:37:46,757
LARGE GROUP THIS IS TRUE.

2670
01:37:46,757 --> 01:37:48,759
DEPENDING ON SEX AND DEGREE OF

2671
01:37:48,759 --> 01:37:50,994
PREMATURITY, 25 TO 50% LESS

2672
01:37:50,994 --> 01:37:53,163
MORTALITY. HOWEVER THIS IS NOT

2673
01:37:53,163 --> 01:37:55,399
UNIVERSALLY TRUE. NOT TRUE ON

2674
01:37:55,399 --> 01:37:57,701
INDIVIDUAL LEVEL OF COURSE NOT

2675
01:37:57,701 --> 01:38:00,370
EVEN TRUE WITHIN THE OVERALL

2676
01:38:00,370 --> 01:38:03,040
PRE-TERM POPULATION. UNDER 28

2677
01:38:03,040 --> 01:38:05,375
WEEKS HAVE HIGHER MORTALITY RATE

2678
01:38:05,375 --> 01:38:08,512
COMPARED TO WHITE INFANTS.  

2679
01:38:08,512 --> 01:38:12,249
HOWEVER THIS CONCEPTS HAS SEEPED

2680
01:38:12,249 --> 01:38:14,451
INTO A LOT OF THE UNCONSCIOUS

2681
01:38:14,451 --> 01:38:17,721
BIASES OF THE NICU CARE AND YOU

2682
01:38:17,721 --> 01:38:22,292
CAN SEE THINGS LIKE STUDY THAT

2683
01:38:22,292 --> 01:38:23,727
SHOW QUALITY OF CARE DEFICIT FOR

2684
01:38:23,727 --> 01:38:26,063
AFRICAN AMERICAN HISPANIC IN THE

2685
01:38:26,063 --> 01:38:27,764
NICU ACROSS EIGHT QUALITY OF

2686
01:38:27,764 --> 01:38:29,099
CARE METRICS. THERE WAS A

2687
01:38:29,099 --> 01:38:31,802
DEFICIT FOR THAT POPULATION. 

2688
01:38:31,802 --> 01:38:33,737
THERE IS ALSO THIS PERVASIVE

2689
01:38:33,737 --> 01:38:39,076
TERM USED FREQUENTLY IN NICU OF

2690
01:38:39,076 --> 01:38:40,944
WHITE BOY SYNDROME, ANECDOTAL SO

2691
01:38:40,944 --> 01:38:42,546
BASED ON POPULATION STUDIES BUT

2692
01:38:42,546 --> 01:38:47,384
EXCUSE TO EXPLAIN AWAY

2693
01:38:47,384 --> 01:38:51,655
PARTICULAR MORBIDITIES OF WHITE

2694
01:38:51,655 --> 01:38:54,024
MALE INFANTS. BOTH FACTORS

2695
01:38:54,024 --> 01:38:55,192
CONTRIBUTE TO DECREASE QUALITY

2696
01:38:55,192 --> 01:38:57,961
OF CARE FOR ALL INFANTS IN IF

2697
01:38:57,961 --> 01:39:01,098
NICU. A HIGH QUALITY --

2698
01:39:01,098 --> 01:39:02,466
QUALITATIVE STUDY TALKING TO

2699
01:39:02,466 --> 01:39:05,802
PARENTS OF INFANTS IN THE

2700
01:39:05,802 --> 01:39:06,904
NICU,AFRICAN AMERICAN PARENT

2701
01:39:06,904 --> 01:39:08,972
REPORT FREQUENTLY LACK OF

2702
01:39:08,972 --> 01:39:11,508
ATTENTION TO INFANTS PERHAPS

2703
01:39:11,508 --> 01:39:14,278
INFANTS ARE PERCEIVED MORE

2704
01:39:14,278 --> 01:39:15,612
ROBUST AND DON'T NEED AS MUCH

2705
01:39:15,612 --> 01:39:18,882
CARE WHICH IS INCORRECT BUT

2706
01:39:18,882 --> 01:39:21,718
PERCEPTION AND FOR WHITE PARENTS

2707
01:39:21,718 --> 01:39:23,053
THEY REPORT LACK OF DIAGNOSTIC

2708
01:39:23,053 --> 01:39:24,621
INTEREST THAT MANY PROBLEMS ARE

2709
01:39:24,621 --> 01:39:28,926
CAST AWAY AS BEING PART OF THIS

2710
01:39:28,926 --> 01:39:30,427
WHIMPY WHITE BOY SYNDROME AND

2711
01:39:30,427 --> 01:39:31,962
THAT MIGHT DELAY TREATMENT OR

2712
01:39:31,962 --> 01:39:34,564
PERHAPS DIAGNOSEsSIS OR

2713
01:39:34,564 --> 01:39:35,632
SOMETHING ELSE, ANOTHER FACTOR

2714
01:39:35,632 --> 01:39:37,601
THAT CONTRIBUTES IS COMPETING

2715
01:39:37,601 --> 01:39:40,137
OUTCOMES. I AM SURE YOU KNOW,S

2716
01:39:40,137 --> 01:39:42,039
OUR TREATMENT OPTIONS IN NICU

2717
01:39:42,039 --> 01:39:44,207
ARE BASED GENERALLY VERY LIMITED

2718
01:39:44,207 --> 01:39:45,442
CLINICAL DATA AND THERE IS A LOT

2719
01:39:45,442 --> 01:39:46,777
OF HETEROGENEITY BETWEEN

2720
01:39:46,777 --> 01:39:50,414
PROVIDERS IN TERMS OF

2721
01:39:50,414 --> 01:39:50,914
VENTILATION STRATEGIES,

2722
01:39:50,914 --> 01:39:54,418
MEDICATION STRATEGIES, AND

2723
01:39:54,418 --> 01:39:55,886
SCREENING TOOLS. THERE ARE NICE

2724
01:39:55,886 --> 01:39:57,721
RISK STRATIFICATION TOOLS INTO

2725
01:39:57,721 --> 01:39:58,789
EXISTENCE MORE RECENTLY THAT

2726
01:39:58,789 --> 01:40:02,159
HELP TO STANDARDIZE CARE, TWO

2727
01:40:02,159 --> 01:40:06,730
MOST COMMONLY USED ONES ARE BPD

2728
01:40:06,730 --> 01:40:08,832
CALCULATOR FOR POST NASAL

2729
01:40:08,832 --> 01:40:12,736
STEROIDS ANDCA CALCULATOR FOR TM

2730
01:40:12,736 --> 01:40:14,338
INFANTS THAT PROVIDE OBJECTIVE

2731
01:40:14,338 --> 01:40:16,306
DECISION MAKING THAT CAN BE

2732
01:40:16,306 --> 01:40:18,809
INCORPORATED WITH CLINICAL

2733
01:40:18,809 --> 01:40:20,043
GUIDELINES. HOWEVER, IF RAISE OR

2734
01:40:20,043 --> 01:40:22,145
SEX OR SOCIOECONOMIC STATUS IS

2735
01:40:22,145 --> 01:40:24,615
NOT INTEGRATED IN TO THESE

2736
01:40:24,615 --> 01:40:25,983
CALCULATORS, IF THE POPULATION

2737
01:40:25,983 --> 01:40:29,386
IN WHICH THEY ARE DEVELOPED IS

2738
01:40:29,386 --> 01:40:31,755
NOT SUFFICIENTLY DIVERSE,

2739
01:40:31,755 --> 01:40:34,157
INTRINSIC BIAS IS INTRODUCED

2740
01:40:34,157 --> 01:40:36,827
INTO THIS ANALYTIC ALGORITHM AND

2741
01:40:36,827 --> 01:40:39,129
THE RESULTS OF THE OUTCOME ARE

2742
01:40:39,129 --> 01:40:40,564
UNPREDICTABLE. SOME CASES YOU

2743
01:40:40,564 --> 01:40:42,933
HAVE A COMPETING, THINGS LIKE

2744
01:40:42,933 --> 01:40:45,002
DEATH, IF BABIES DIE THEY ARE

2745
01:40:45,002 --> 01:40:45,969
LESS LIKELY TO HAVE THAT

2746
01:40:45,969 --> 01:40:48,171
OUTCOME. IF THIS THAT IS

2747
01:40:48,171 --> 01:40:49,506
UNEVENLY DISTRIBUTED BY RACE IT

2748
01:40:49,506 --> 01:40:50,640
WILL PRODUCE INACCURATE

2749
01:40:50,640 --> 01:40:55,312
PREDICTIONS. SO LET'S TAKE THE

2750
01:40:55,312 --> 01:40:57,014
BPD CALCULATOR, PUBLISH TWO

2751
01:40:57,014 --> 01:41:00,250
PAPERS USING THIS BPD CALCULATOR

2752
01:41:00,250 --> 01:41:04,254
AND THRESHOLD 60% RISK FOR BPD

2753
01:41:04,254 --> 01:41:07,057
AS TARGETED POINT FOR POSTNATAL

2754
01:41:07,057 --> 01:41:08,358
STEROID TREATMENT. IT WAS

2755
01:41:08,358 --> 01:41:11,395
EFFECTIVE, REDUCE BPD AND

2756
01:41:11,395 --> 01:41:14,164
CEREBRAL PALSY IN THE PATIENTS

2757
01:41:14,164 --> 01:41:17,634
WHO HAVE THIS APPROACH TAKEN.

2758
01:41:17,634 --> 01:41:19,836
THERE IS CONFOUNDING FACTORS

2759
01:41:19,836 --> 01:41:22,639
HERE, THOUGH AS I MENTIONED

2760
01:41:22,639 --> 01:41:23,940
EARLIER MORTALITY OVERALL IS

2761
01:41:23,940 --> 01:41:27,210
LOWER IN PRE-TERM AFRICAN

2762
01:41:27,210 --> 01:41:30,414
AMERICAN INFANTS, THOSE BORN

2763
01:41:30,414 --> 01:41:31,815
MOST PRAY METURELY IS TWO TO

2764
01:41:31,815 --> 01:41:33,383
FOUR TIMES HIGHER THAN AFRICAN

2765
01:41:33,383 --> 01:41:36,153
AMERICAN INFANTS, MOST MORTALITY

2766
01:41:36,153 --> 01:41:38,588
OCCURS IN SEVEN DAYS BEFORE

2767
01:41:38,588 --> 01:41:42,092
CALCULATOR POINT IS USED. WHICH

2768
01:41:42,092 --> 01:41:43,527
MEANS BLACK INFANTS POTENTIALLY

2769
01:41:43,527 --> 01:41:46,396
MORE LIKELY TO DEVELOP BPG

2770
01:41:46,396 --> 01:41:48,031
BECAUSE THEY ARE SICKER ARE

2771
01:41:48,031 --> 01:41:49,499
INCLUDED IN THE DATA SET, THEY

2772
01:41:49,499 --> 01:41:53,470
PASSED AWAY. THEY FALL OUT

2773
01:41:53,470 --> 01:41:55,806
PREACH REACH THAT PRIMARY

2774
01:41:55,806 --> 01:41:57,541
OUTCOME, BABIES BEHIND ARE NO

2775
01:41:57,541 --> 01:41:58,442
LONGER REPRESENTATIVE OF ALL

2776
01:41:58,442 --> 01:42:00,577
INFANTS. SO THIS LEADS TO

2777
01:42:00,577 --> 01:42:01,978
UNPREDICTABLE RESULTS. IF YOU

2778
01:42:01,978 --> 01:42:04,915
TAKE THE BPD OUTCOME ESCAMBIA

2779
01:42:04,915 --> 01:42:06,316
MAY TORR, RISK OF MODERATE OR

2780
01:42:06,316 --> 01:42:08,718
SEVERE DECREASES WITH INCREASE

2781
01:42:08,718 --> 01:42:10,687
FIO 2 BECAUSE BABIES WHO DIED

2782
01:42:10,687 --> 01:42:13,890
ARE DROPPING OUT.  BUT BECAUSE

2783
01:42:13,890 --> 01:42:15,492
OF UNEVEN DISTRIBUTION OF

2784
01:42:15,492 --> 01:42:17,894
MORTALITY AND PREMATURITY, THAT

2785
01:42:17,894 --> 01:42:20,197
POTENTIALLY MEANS SOME INFANTS

2786
01:42:20,197 --> 01:42:22,165
ACCORDING TO THE CALCULATOR ARE

2787
01:42:22,165 --> 01:42:24,401
NEVER PRESCRIBED STEROIDS.  

2788
01:42:24,401 --> 01:42:25,735
WHICH MEANS THEY MISS OUT ON

2789
01:42:25,735 --> 01:42:29,372
THIS REDUCTION IN BPD AND

2790
01:42:29,372 --> 01:42:30,474
CEREBRAL PALSY. THIS ARE SOME

2791
01:42:30,474 --> 01:42:32,242
FIGURES FROM PAPER FROM ONE OF

2792
01:42:32,242 --> 01:42:34,744
OUR JUNIOR FACULTY MEMBERS IN

2793
01:42:34,744 --> 01:42:36,413
THE LAB WHO LOOKED A T THIS

2794
01:42:36,413 --> 01:42:38,515
CALCULATOR WITH SYNTHETIC

2795
01:42:38,515 --> 01:42:39,616
INFANTS AND SHE PLOTTED O OUT

2796
01:42:39,616 --> 01:42:42,486
WHETHER THE RISK PREDICTION IS.

2797
01:42:42,486 --> 01:42:44,354
ON THE RIGHT IS MORTALITY AND

2798
01:42:44,354 --> 01:42:46,690
YOU CAN SEE THAT AS FIO 2

2799
01:42:46,690 --> 01:42:47,891
INCREASES RISK OF MORTALITY

2800
01:42:47,891 --> 01:42:49,359
INCREASES WHICH IS EXPECTED AND

2801
01:42:49,359 --> 01:42:50,393
THE BLACK INFANTS HAVE HIGHER

2802
01:42:50,393 --> 01:42:53,697
RISK OF MORTALITY. ACROSS THE

2803
01:42:53,697 --> 01:42:56,466
BOARD WHICH IS ALSO WHAT WE

2804
01:42:56,466 --> 01:42:59,436
EXPECT FOR BABY BORN AT 24 WEEKS

2805
01:42:59,436 --> 01:43:03,707
AS AN EXAMPLE HERE. ON THE LEFT

2806
01:43:03,707 --> 01:43:06,877
YOU SEE PREDICTED RISK OF BPD

2807
01:43:06,877 --> 01:43:09,412
WHICH DECREASES AS FEO 2

2808
01:43:09,412 --> 01:43:11,047
INCREASES WHICH DOESN'T MAKE

2809
01:43:11,047 --> 01:43:14,217
SENSE, THOSE BABIES MORE SEVERE

2810
01:43:14,217 --> 01:43:16,853
DISEASE. YOU CAN SEE AGAIN THIS

2811
01:43:16,853 --> 01:43:18,255
CONSISTENT GAP BETWEEN THE WHITE

2812
01:43:18,255 --> 01:43:21,291
AND BLACK INFANTS IN TERMS OF

2813
01:43:21,291 --> 01:43:23,326
PREDICTED RISK AN THRESHOLD FOR

2814
01:43:23,326 --> 01:43:26,496
TREATMENT WHICH IS SHOWN BY

2815
01:43:26,496 --> 01:43:29,699
GREEN LINE 60%, DEMONSTRATE THAT

2816
01:43:29,699 --> 01:43:31,034
BLACK INFANTS MANY THIS EXAMPLE

2817
01:43:31,034 --> 01:43:33,503
HERE ARE MALE TOP AND FEMALE

2818
01:43:33,503 --> 01:43:35,372
BOTTOM NEVER REACH THAT 60%

2819
01:43:35,372 --> 01:43:37,073
THRESHOLD FOR INTERVENTION WHICH

2820
01:43:37,073 --> 01:43:39,442
MEANS THEY NEVER BE PRESCRIBED

2821
01:43:39,442 --> 01:43:41,645
STEROIDS NO MATTER WHAT FIH 2

2822
01:43:41,645 --> 01:43:43,246
WAS AND MISSING OUT ON

2823
01:43:43,246 --> 01:43:45,515
BENEFICIAL TREATMENT BECAUSE OF

2824
01:43:45,515 --> 01:43:47,384
THE WAY THAT THE ALGORITHM IS

2825
01:43:47,384 --> 01:43:50,187
WORKING IN CALCULATOR. THERE'S

2826
01:43:50,187 --> 01:43:51,755
ANOTHER LAYER OF BIAS.  PULSE

2827
01:43:51,755 --> 01:43:52,923
OKAY SIMILAR TEARS ONE STANDARD

2828
01:43:52,923 --> 01:43:55,458
OF CARE DEVICE EVERY BABY IN

2829
01:43:55,458 --> 01:43:59,396
NICU HAS ONE ON AND THEY UNDER A

2830
01:43:59,396 --> 01:44:01,298
SIMPLE PRINCIPLE OF LIGHT

2831
01:44:01,298 --> 01:44:02,699
ABSORPTION, RED LIGHT INTO

2832
01:44:02,699 --> 01:44:04,668
TISSUE HAND OR FOOT ON THIS

2833
01:44:04,668 --> 01:44:06,469
EXAMPLE HERE BOUNCES AROUND AND

2834
01:44:06,469 --> 01:44:08,905
COMES BACK TO RECEIVER. THERE

2835
01:44:08,905 --> 01:44:10,807
ARE TABLES INSIDE THE PULSE OKAY

2836
01:44:10,807 --> 01:44:14,010
SIMILAR TEAR THAT MEASURE HOW

2837
01:44:14,010 --> 01:44:16,947
MUCH LIGHT RETURNS BACK WITH

2838
01:44:16,947 --> 01:44:19,049
IDEA THAT SOMETHING ABSORBS MORE

2839
01:44:19,049 --> 01:44:21,851
RED LIGHT IS INDICATIVE OFOXI

2840
01:44:21,851 --> 01:44:23,620
HEMOGLOBIN, IT ABOUTSORS MORE

2841
01:44:23,620 --> 01:44:26,089
RED LIGHT THAN DEOXI, SO THE

2842
01:44:26,089 --> 01:44:27,290
MORE ABSORPTION THE HIGHER THE

2843
01:44:27,290 --> 01:44:32,028
OXYGEN SATURATION. THE PROBLEM

2844
01:44:32,028 --> 01:44:35,332
IS MEL NIH ABSORBS NEAR INFRARED

2845
01:44:35,332 --> 01:44:36,800
LIGHT SO SECONDARY FACTOR

2846
01:44:36,800 --> 01:44:41,304
ABSORBING THAT LIGHT WHICH IT

2847
01:44:41,304 --> 01:44:42,138
DOESN'T RECOGNIZE AND REPORTS

2848
01:44:42,138 --> 01:44:44,074
HIGHER OXYGEN SATURATION IN

2849
01:44:44,074 --> 01:44:44,908
PATIENTS WITH MORE MELANIE THAN

2850
01:44:44,908 --> 01:44:49,079
IS ACTUALLY TRUE.  BEFORE

2851
01:44:49,079 --> 01:44:50,213
DEVICES ON THE MARKET THERE'S

2852
01:44:50,213 --> 01:44:51,114
INTERNAL VALIDATION TESTING OF

2853
01:44:51,114 --> 01:44:53,316
COURSE BUT THERE IS CONCERN THAT

2854
01:44:53,316 --> 01:44:55,352
THE PATIENT POOL IN THE ORIGINAL

2855
01:44:55,352 --> 01:44:56,519
VALIDATION STUDIES WAS NOT

2856
01:44:56,519 --> 01:45:00,790
RACIALLY DIVERSE.  THIS CAME OUT

2857
01:45:00,790 --> 01:45:02,392
AND HAS BEEN WIDELY DISCUSSED

2858
01:45:02,392 --> 01:45:05,061
AFTER PAPER BY (INAUDIBLE) IN

2859
01:45:05,061 --> 01:45:07,097
2020 LOOKING AT PATIENTS

2860
01:45:07,097 --> 01:45:10,433
ADMITTED TO THE HOSPITAL WITH

2861
01:45:10,433 --> 01:45:12,135
COVID-19 IN 2020 WITH THEY

2862
01:45:12,135 --> 01:45:13,169
COMPARED OXYGEN SATURATION

2863
01:45:13,169 --> 01:45:16,640
MEASURED BY ARTERIOL BLOOD GAS,

2864
01:45:16,640 --> 01:45:18,108
GOLD STANDARD TO THE

2865
01:45:18,108 --> 01:45:19,743
SIMULTANEOUS MEASURE ON PULSE

2866
01:45:19,743 --> 01:45:22,545
OKAY SIMILAR TEAR AND PATIENTS

2867
01:45:22,545 --> 01:45:25,448
DIVIDED BY RACIAL STATUS. AND IN

2868
01:45:25,448 --> 01:45:27,951
PARTICULAR CONCERN CAME UP WITH

2869
01:45:27,951 --> 01:45:32,088
A CULT HIGH POX SEEMIA THIS IS

2870
01:45:32,088 --> 01:45:33,423
HYPOXEMIA OCCUR WHEN PULSE IS

2871
01:45:33,423 --> 01:45:35,358
READING NORMAL OR EXPECTED VALUE

2872
01:45:35,358 --> 01:45:37,127
BUT THE GOAL STANDARD

2873
01:45:37,127 --> 01:45:39,496
MEASUREMENT IS TRULY HIGH

2874
01:45:39,496 --> 01:45:41,431
POXEMIC. AND STUDY BLACK PARTES

2875
01:45:41,431 --> 01:45:42,699
HAD THREE TIMES FREQUENCY OF

2876
01:45:42,699 --> 01:45:45,568
THIS OCCURRENCE SO THIS IS

2877
01:45:45,568 --> 01:45:48,038
ARTERIAL OXYGEN SATURATION LESS

2878
01:45:48,038 --> 01:45:50,307
THAN 88% WHEN PULSE OX GREATER

2879
01:45:50,307 --> 01:45:53,076
THAN 92% WE DID SIMILAR STUDY

2880
01:45:53,076 --> 01:45:54,411
WHICH IS PUBLISHED EARLIER THIS

2881
01:45:54,411 --> 01:45:57,147
YEAR BUT IN A PRE-TERM PATIENT

2882
01:45:57,147 --> 01:46:00,617
POPULATION OPPOSED TO ADULT ICU

2883
01:46:00,617 --> 01:46:02,819
PATIENTS WE DID THE SAME

2884
01:46:02,819 --> 01:46:05,088
APPROACH WITH ARTERIAL OXYGEN

2885
01:46:05,088 --> 01:46:07,357
SAMPLES AND SIMULTANEOUS PULSE

2886
01:46:07,357 --> 01:46:09,993
OKAY SIMILAR TEAR SAMPLES AND

2887
01:46:09,993 --> 01:46:13,129
FOUND SIMILAR RESULTS, 2.4 RISK

2888
01:46:13,129 --> 01:46:16,466
OF OKAY CULT HYPOXEMIA. WE

2889
01:46:16,466 --> 01:46:19,302
CHANGE THE RANKS TO CHANGE FOR

2890
01:46:19,302 --> 01:46:22,806
PRE-TERM INFANTS, ARTIER WHERE

2891
01:46:22,806 --> 01:46:24,307
WILLIAL OXYGEN SATURATION LESS

2892
01:46:24,307 --> 01:46:27,043
THAN 85% BUT READING IS GREATER

2893
01:46:27,043 --> 01:46:28,878
THAN 90% MORE COMMON IN AFRICAN

2894
01:46:28,878 --> 01:46:30,080
AMERICAN INFANTS. YOU CAN SEE IN

2895
01:46:30,080 --> 01:46:31,381
THE PLOT ON THE LEFT THE DEGREE

2896
01:46:31,381 --> 01:46:33,616
OF MEASUREMENT BIAS THERE IS A

2897
01:46:33,616 --> 01:46:36,553
DIFFERENCE, THERE IS A BIAS GAP

2898
01:46:36,553 --> 01:46:38,555
BETWEEN WHITE AND BLACK INFANTS,

2899
01:46:38,555 --> 01:46:39,556
SOLID VERSUS DOTTED LINE

2900
01:46:39,556 --> 01:46:43,259
REGARDLESS OF THE SPO 2

2901
01:46:43,259 --> 01:46:44,627
MEASUREMENT, BRIDGES ACROSS THE

2902
01:46:44,627 --> 01:46:47,630
ENTIRE SPAN OF PULSE OXIMETRY

2903
01:46:47,630 --> 01:46:51,134
MEASUREMENT AND POSITIVE BIASEST

2904
01:46:51,134 --> 01:46:54,170
MAYING OXYGEN SATURATION. THIS

2905
01:46:54,170 --> 01:47:00,710
IS IMPORTANT BECAUSE PIE POXIA

2906
01:47:00,710 --> 01:47:02,379
IS LEADING PARTICULARLY ONES

2907
01:47:02,379 --> 01:47:03,880
THAT MAKE US THINK THAT THE BABY

2908
01:47:03,880 --> 01:47:06,683
HAS HIGHER SATURATION THAN DO

2909
01:47:06,683 --> 01:47:08,885
INCREASES THE INCREASE THE RISK

2910
01:47:08,885 --> 01:47:11,454
OF HYPOXEMIA. THE FDA IS

2911
01:47:11,454 --> 01:47:12,288
STUDYING THIS AND THERE IS A

2912
01:47:12,288 --> 01:47:14,724
MEETING OF MEDICAL DEVICE

2913
01:47:14,724 --> 01:47:15,658
ADVISORY COMMITTEE SCHEDULED

2914
01:47:15,658 --> 01:47:19,529
LATER THIS YEAR. TO WRAP UP IN

2915
01:47:19,529 --> 01:47:22,031
CONCLUSION, THERE IS AN UNEVEN

2916
01:47:22,031 --> 01:47:24,234
RISK, ALL PRE-TERM INFANTS RISK

2917
01:47:24,234 --> 01:47:26,503
FOR BRAIN INJURY CEREBRAL PALSY

2918
01:47:26,503 --> 01:47:28,204
THE DISTRIBUTION OF THAT RISK IS

2919
01:47:28,204 --> 01:47:30,440
NOT EVEN, AFRICAN AMERICAN WOMEN

2920
01:47:30,440 --> 01:47:33,610
HAVE PRE-TERM INFANTS AND

2921
01:47:33,610 --> 01:47:35,979
INFANTS HAVE MORE SEVERE

2922
01:47:35,979 --> 01:47:37,514
CEREBRAL PALSY. TOOLS WE USE TO

2923
01:47:37,514 --> 01:47:40,383
TAKE CARE OF INFANTS IN THE NICU

2924
01:47:40,383 --> 01:47:43,987
HAVE BIAS. THE

2925
01:47:43,987 --> 01:47:45,555
UNDERREPRESENTATION OF AFRICAN

2926
01:47:45,555 --> 01:47:46,956
AMERICANS WHEN THESE TOOLS

2927
01:47:46,956 --> 01:47:48,892
DEVICES ARE DEVELOPED LEADS TO

2928
01:47:48,892 --> 01:47:51,728
PERFORMANCE BIAS. AND MANY OR

2929
01:47:51,728 --> 01:47:53,963
MOST CASES THAT IS UNRECOGNIZED

2930
01:47:53,963 --> 01:47:57,367
SO CARE IS PROCEEDING WITHOUT

2931
01:47:57,367 --> 01:47:59,269
THIS GAP BEING RECOGNIZED OR

2932
01:47:59,269 --> 01:48:01,438
ADDRESSED. THIS LEADS TO

2933
01:48:01,438 --> 01:48:02,906
INCREASE RISK OF PULMONARY

2934
01:48:02,906 --> 01:48:06,276
DISEASE, INCREASE HYPOXIA, ALL

2935
01:48:06,276 --> 01:48:08,044
PRECIPITATING FACTORS OF BRAIN

2936
01:48:08,044 --> 01:48:10,713
INJURY AND SET STAGE FOR LONG

2937
01:48:10,713 --> 01:48:12,115
TERM NEURAL IMPAIRMENT INCLUDING

2938
01:48:12,115 --> 01:48:13,316
CEREBRAL PALSY. SO WHAT IS

2939
01:48:13,316 --> 01:48:14,517
NEEDED TO MOVE FORWARD TO CLOSE

2940
01:48:14,517 --> 01:48:16,486
THIS GAP? THE I PRIMARY THING IS

2941
01:48:16,486 --> 01:48:19,155
FOR DEVELOPMENT OF ANY NEW MODEL

2942
01:48:19,155 --> 01:48:22,258
WHETHER MEDICAL DEVICE OR

2943
01:48:22,258 --> 01:48:25,829
PREDICTION MODEL, CLINICAL TOOL

2944
01:48:25,829 --> 01:48:27,831
FOR INTERVENTION. THERE NEEDS TO

2945
01:48:27,831 --> 01:48:30,066
BE INTENTIONAL USAGE OF DIVERSE

2946
01:48:30,066 --> 01:48:32,001
PATIENT POPULATIONS THAT INCLUDE

2947
01:48:32,001 --> 01:48:34,604
ADEQUATE OR EVEN

2948
01:48:34,604 --> 01:48:35,705
OVERRECOMMENDATION MINORITY

2949
01:48:35,705 --> 01:48:39,309
GROUP MEMBERS SO THAT THE

2950
01:48:39,309 --> 01:48:40,810
DEVICES HAVE EQUAL PERFORMANCE

2951
01:48:40,810 --> 01:48:42,846
REGARDLESS OF THE PATIENTS

2952
01:48:42,846 --> 01:48:45,648
RACIAL OR ETHNIC BACKGROUND.

2953
01:48:45,648 --> 01:48:47,784
ALSO TO ACCOUNT FOR COMPETING

2954
01:48:47,784 --> 01:48:50,420
OUTCOMES ESPECIALLY WHEN THEY

2955
01:48:50,420 --> 01:48:52,088
ARE UNEVENLY DISTRIBUTED ACROSS

2956
01:48:52,088 --> 01:48:54,657
THE POPULATION. THEN ADDITIONAL

2957
01:48:54,657 --> 01:48:56,726
RESEARCH THAT NEEDS TO OCCUR

2958
01:48:56,726 --> 01:48:57,694
PARTICULARLY FROM CEREBRAL PALSY

2959
01:48:57,694 --> 01:49:00,096
STANDPOINT LOOK ACT THE

2960
01:49:00,096 --> 01:49:00,730
ENTERRECOMMENDATION BETWEEN RACE

2961
01:49:00,730 --> 01:49:01,998
AND SOCIAL ECONOMIC STATUS.  TO

2962
01:49:01,998 --> 01:49:03,233
UNDERSTAND THE PROGRESSION OF

2963
01:49:03,233 --> 01:49:04,200
CEREBRAL PALSY AND THE TREATMENT

2964
01:49:04,200 --> 01:49:07,136
OF IT. PARTICULARLY WHY THE

2965
01:49:07,136 --> 01:49:09,005
DISTRIBUTION OF CEREBRAL PALSY

2966
01:49:09,005 --> 01:49:13,076
IS SO DIFFERENT POSTNATALLY WITH

2967
01:49:13,076 --> 01:49:14,644
MUCH MORE SPASTIC SEVERE

2968
01:49:14,644 --> 01:49:15,778
CEREBRAL PALSY IN AFRICAN

2969
01:49:15,778 --> 01:49:16,846
AMERICAN PATIENT POPULATION.

2970
01:49:16,846 --> 01:49:18,815
WITH THAT I WOULD LIKE TO

2971
01:49:18,815 --> 01:49:20,016
ACKNOWLEDGE ALL THE MEMBERS OF

2972
01:49:20,016 --> 01:49:21,451
RESEARCH LAB THAT MAKE THIS WORK

2973
01:49:21,451 --> 01:49:22,418
POSSIBLE AND ALL THE DIFFERENT

2974
01:49:22,418 --> 01:49:25,722
SOURCES OF OUR FUNDING. THANK

2975
01:49:25,722 --> 01:49:32,028
YOU FOR LISTENING. 

2976
01:49:32,028 --> 01:49:39,135
>> WHAT A SERIES OF TALKS.

2977
01:49:39,135 --> 01:49:41,638
APPRECIATE PERSPECTIVES ON

2978
01:49:41,638 --> 01:49:43,206
CLINICAL RESEARCH AND I

2979
01:49:43,206 --> 01:49:45,108
APPRECIATE THE AUDIENCE. WE HAVE

2980
01:49:45,108 --> 01:49:46,175
ALMOST 200 VIEWERS TO THIS

2981
01:49:46,175 --> 01:49:48,011
WORKSHOP. SO LET ME REMIND YOU

2982
01:49:48,011 --> 01:49:50,079
THAT THE WHOLE MEETING TODAY'S

2983
01:49:50,079 --> 01:49:53,116
SESSION AS WELL AS YETS WILL BE

2984
01:49:53,116 --> 01:49:55,785
ARCHIVED ON THE NIH VIDEOCAST

2985
01:49:55,785 --> 01:49:57,120
SITE. SHOULD BE AVAILABLE IN A

2986
01:49:57,120 --> 01:49:59,956
COUPLE OF DAYS. AND WE HAVE SOME

2987
01:49:59,956 --> 01:50:00,957
GREAT QUESTIONS AND COMMENTS

2988
01:50:00,957 --> 01:50:02,425
THAT HAVE BEEN ENTERED IN THE

2989
01:50:02,425 --> 01:50:04,894
LIVE FEEDBACK BUTTON. AND AS WE

2990
01:50:04,894 --> 01:50:11,401
GO THROUGH THIS, WE WELCOME ANY

2991
01:50:11,401 --> 01:50:11,968
ADDITIONAL SUBMISSIONS THAT.

2992
01:50:11,968 --> 01:50:18,207
COIN. SO BEFORE WE START THAT

2993
01:50:18,207 --> 01:50:19,642
DISCUSSION SESSION WE SHOULD

2994
01:50:19,642 --> 01:50:21,611
HAVE ABOUT 35, 40 MINUTES OF

2995
01:50:21,611 --> 01:50:23,246
DISCUSSION, LET ME JUST BRIEFLY

2996
01:50:23,246 --> 01:50:25,848
REVIEW WHAT WE WENT THROUGH THIS

2997
01:50:25,848 --> 01:50:28,084
MORNING. STACEY DUSING STARTED

2998
01:50:28,084 --> 01:50:29,652
US OUT WITH A DISCUSSION THE

2999
01:50:29,652 --> 01:50:33,456
IMPORTANCE OF EARLY

3000
01:50:33,456 --> 01:50:34,924
INTERVENTION, AND SHE RELIED A

3001
01:50:34,924 --> 01:50:36,893
LOT ON CLINICAL CONTEXT HOW CP

3002
01:50:36,893 --> 01:50:38,461
IS DIAGNOSED AND DIFFERENT

3003
01:50:38,461 --> 01:50:41,164
THERAPIES THAT ARE OUT THERE.

3004
01:50:41,164 --> 01:50:45,034
BROAD CHALLENGE TO OUR COMMUNITY

3005
01:50:45,034 --> 01:50:48,571
AND TO TWO PARENTS, KATHERINE

3006
01:50:48,571 --> 01:50:50,273
HUSTAD FOLLOWED UP WITH SPEECH

3007
01:50:50,273 --> 01:50:52,609
AND LANGUAGE DISARTHEROIA, AND

3008
01:50:52,609 --> 01:50:54,344
INTERVENTIONS TO SUPPORT

3009
01:50:54,344 --> 01:50:55,244
LANGUAGE AND INTELLIGIBILITY,

3010
01:50:55,244 --> 01:50:57,347
PROMOTE COMMUNICATIONS WHICH IS

3011
01:50:57,347 --> 01:51:02,118
VERY IMPORTANT FOR SOCIALIZATION

3012
01:51:02,118 --> 01:51:05,154
OF KIDS. DIANE DAMIANO DISCUSSED

3013
01:51:05,154 --> 01:51:06,456
POLICIES FOR CEREBRAL PALSY

3014
01:51:06,456 --> 01:51:09,259
INCLUDING MOBILE NON-INVASIVE

3015
01:51:09,259 --> 01:51:10,226
APPROACHES TO GIVE INTERESTING

3016
01:51:10,226 --> 01:51:11,728
INSIGHTS A T THE BRAIN FUNCTION

3017
01:51:11,728 --> 01:51:13,863
AND THESE CAN BE USED IN MORE

3018
01:51:13,863 --> 01:51:16,265
NATURALISTIC SETTINGS. MARK

3019
01:51:16,265 --> 01:51:18,101
PETERSON REMINDED US OF SOME OF

3020
01:51:18,101 --> 01:51:20,703
THE SECONDARY ISSUES THAT ARISE

3021
01:51:20,703 --> 01:51:23,006
IN CP AND TRANSITION TO

3022
01:51:23,006 --> 01:51:25,708
ADULTHOOD. ESPECIALLY METABOLIC

3023
01:51:25,708 --> 01:51:27,777
AND MUSCULOSKELETAL ISSUES, ALSO

3024
01:51:27,777 --> 01:51:30,446
PAIN AND EVEN MENTAL HEALTH

3025
01:51:30,446 --> 01:51:33,316
ISSUES, AND PERHAPS NEED FOR

3026
01:51:33,316 --> 01:51:34,117
CONTINUED VIGILANCE AND CLINICAL

3027
01:51:34,117 --> 01:51:38,621
SUPPORT. AND FINALLY ZACHARY

3028
01:51:38,621 --> 01:51:40,523
VESOULIS PROVIDED INSIGHTS TO

3029
01:51:40,523 --> 01:51:43,926
RACIAL DISPARITIES WITH A BRIEF

3030
01:51:43,926 --> 01:51:45,695
DISCUSSION OF SOME OF THE

3031
01:51:45,695 --> 01:51:47,730
EXTRINSIC INFLUENCES THAT AFFECT

3032
01:51:47,730 --> 01:51:50,466
INCIDENCE ACCESS AND EQUITABLE

3033
01:51:50,466 --> 01:51:51,300
THERAPEUTICS SUPPORT AND

3034
01:51:51,300 --> 01:51:54,203
CLINICAL OUTCOMES AND VALIDITY,

3035
01:51:54,203 --> 01:51:58,875
ACROSS RACIALIZED GROUPS. SO

3036
01:51:58,875 --> 01:52:02,211
LET'S SHIFT OVER INTO SOME OF

3037
01:52:02,211 --> 01:52:03,379
THE DISCUSSION AND WE LOOK

3038
01:52:03,379 --> 01:52:05,481
FORWARD TO THE SPEAKERS UNMUTING

3039
01:52:05,481 --> 01:52:06,516
THEMSELVES AND RESPONDING. 

3040
01:52:06,516 --> 01:52:08,217
LET'S GET ALL THE SPEAKERS ON

3041
01:52:08,217 --> 01:52:12,755
THE SCREEN HERE.  IF WE CAN. WE

3042
01:52:12,755 --> 01:52:14,824
ARE ALL SET AND LET ME START

3043
01:52:14,824 --> 01:52:18,628
WITH STACEY, YOU PROVIDED SOME

3044
01:52:18,628 --> 01:52:20,663
GREAT DISCUSSION OF WHAT IS OUT

3045
01:52:20,663 --> 01:52:22,365
THERE. IT IS EXCITING BUT ALSO

3046
01:52:22,365 --> 01:52:24,033
PUTS A TREMENDOUS BURDEN AND

3047
01:52:24,033 --> 01:52:26,402
ANXIETY ON THE PARENTS. CAN YOU

3048
01:52:26,402 --> 01:52:28,371
SAY A LITTLE BIT ABOUT HOW

3049
01:52:28,371 --> 01:52:30,440
PARENTS CAN COPE WITH THIS

3050
01:52:30,440 --> 01:52:32,008
TREMENDOUS RUSH OF INFORMATION

3051
01:52:32,008 --> 01:52:34,077
IN DECIDING WHAT IS RIGHT FOR

3052
01:52:34,077 --> 01:52:38,281
THEIR KIDS AND TO NOT FEEL

3053
01:52:38,281 --> 01:52:39,515
OVERLY GUILTY BY BUT USE THESE

3054
01:52:39,515 --> 01:52:40,950
INTERVENTIONS. THANK YOU, RALPH

3055
01:52:40,950 --> 01:52:43,319
THIS IS A GREAT QUESTION. I

3056
01:52:43,319 --> 01:52:44,587
THINK ONE OF THE BIGGEST THINGS

3057
01:52:44,587 --> 01:52:46,122
FOR US TO KEEP IN MIND IS THAT

3058
01:52:46,122 --> 01:52:48,124
IF WE ARE SUPPORTING PARENTS

3059
01:52:48,124 --> 01:52:50,727
FROM THE NICU TO HOME, OR FROM

3060
01:52:50,727 --> 01:52:53,529
THOSE EARLY RISK MARKERS, UP

3061
01:52:53,529 --> 01:52:55,398
UNTIL THEY ARE GOING THROUGH THE

3062
01:52:55,398 --> 01:52:57,233
PROCESS OF EARLY INTENTION THEN

3063
01:52:57,233 --> 01:52:58,868
WE ARE RIGHT THERE WITH THEM. WE

3064
01:52:58,868 --> 01:53:01,370
ARE WALKING THIS PATH WITH THEM 

3065
01:53:01,370 --> 01:53:03,506
VERSUS SAYING YOU CAME IN FOR

3066
01:53:03,506 --> 01:53:05,508
FOLLOW-UP VISIT OR SAW

3067
01:53:05,508 --> 01:53:07,944
NEUROLOGIST, AND ALL OF A SUDDEN

3068
01:53:07,944 --> 01:53:08,878
SOMEONE SAYS CEREBRAL PALSY AND

3069
01:53:08,878 --> 01:53:11,314
THEY ARE NOT PREPARED.  WHEN WE

3070
01:53:11,314 --> 01:53:13,249
HELP PARENTS FROM THE BEGINNING,

3071
01:53:13,249 --> 01:53:14,884
SEE HOW TO BOND WITH THEIR BABY

3072
01:53:14,884 --> 01:53:18,821
AND HOW TO RELATE TO THEM, WE

3073
01:53:18,821 --> 01:53:20,623
THINK IT IMPROVES COMPLIANCE

3074
01:53:20,623 --> 01:53:22,225
WITH PARTICIPATING IN THIS EARLY

3075
01:53:22,225 --> 01:53:24,327
DETECTION PROCESS BUT ALSO

3076
01:53:24,327 --> 01:53:26,462
PREPARATION FOR HANDLING THE

3077
01:53:26,462 --> 01:53:28,131
NEWS AND THE DECISION TO

3078
01:53:28,131 --> 01:53:29,132
INCREASE OR DECREASE THEIR

3079
01:53:29,132 --> 01:53:32,235
SERVICES. SO IT BODES FOR WHY IT

3080
01:53:32,235 --> 01:53:33,636
IS SO IMPORTANT TO SUPPORT THEM

3081
01:53:33,636 --> 01:53:41,277
EVEN PRIOR TO DIAGNOSIS OF CP.

3082
01:53:41,277 --> 01:53:43,379
>> IF IT IS THEIR FIRST
TRIAL OR

3083
01:53:43,379 --> 01:53:45,414
THEY HAVE OTHER TRIALS AND HOW

3084
01:53:45,414 --> 01:53:47,116
DOES THIS SUPPORT TRAINING

3085
01:53:47,116 --> 01:53:52,522
AFFECT LARGER FAMILY?

3086
01:53:52,522 --> 01:53:53,689
>> IF YOU HAVE OTHER
CHILDREN

3087
01:53:53,689 --> 01:53:55,458
AND IF THEIR OTHER CHILD HAD

3088
01:53:55,458 --> 01:53:56,592
DISABILITY SOMETIMES WE HAVE

3089
01:53:56,592 --> 01:53:57,894
FAMILIES WHOSE FIRST CHILD HAD A

3090
01:53:57,894 --> 01:53:59,262
DISABILITY AND THEY ASSUME THE

3091
01:53:59,262 --> 01:54:02,565
OTHERS ARE TOTALLY FINE. THEY

3092
01:54:02,565 --> 01:54:06,202
MAY OR MAY NOT BE. THE BIG PIECE

3093
01:54:06,202 --> 01:54:07,537
IS WE HAVE TO LOOK IN THE FAMILY

3094
01:54:07,537 --> 01:54:10,606
STRUCTURE. AND THAT IS THE ROLE

3095
01:54:10,606 --> 01:54:11,607
OF INTERVENTIONISTS OR THERAPIST

3096
01:54:11,607 --> 01:54:12,975
WHOSE ARE USED TO WORKING WITH

3097
01:54:12,975 --> 01:54:15,945
YOUNG FAMILIES. IT IS ONE OF THE

3098
01:54:15,945 --> 01:54:17,046
REALLY IMPORTANT MARKERS OF WHY

3099
01:54:17,046 --> 01:54:20,082
WE NEED TO HAVE PEOPLE WHO

3100
01:54:20,082 --> 01:54:21,517
SPECIALIZE IN THE FIRST YEAR OF

3101
01:54:21,517 --> 01:54:24,187
LIFE. SEEING THESE KIDS, NOT THE

3102
01:54:24,187 --> 01:54:25,788
SAME THING TO SEE A BABY AS THEY

3103
01:54:25,788 --> 01:54:30,059
LEAVE THE NICU AS TO SEE A

3104
01:54:30,059 --> 01:54:30,526
THREE-YEAR-OLD. A TWO,

3105
01:54:30,526 --> 01:54:31,861
THREE-YEAR-OLD IS A DIFFERENT

3106
01:54:31,861 --> 01:54:33,596
CHILD THAN A NEWBORN COMING ON

3107
01:54:33,596 --> 01:54:34,931
AND WE NEED TO SUPPORT THE

3108
01:54:34,931 --> 01:54:38,601
ENTIRE FAMILY UNIT IN A

3109
01:54:38,601 --> 01:54:39,402
DIFFERENT WAY.

3110
01:54:39,402 --> 01:54:42,872
>> KATHERINE SHIFT TO
TOPICS YOU

3111
01:54:42,872 --> 01:54:44,574
RAISE, FOR KIDS THAT HAVE MORE

3112
01:54:44,574 --> 01:54:48,911
SERIOUS COMMUNICATION ISSUES, WE

3113
01:54:48,911 --> 01:54:51,314
WERE TALKING OPTIONS FOR

3114
01:54:51,314 --> 01:54:54,650
THERAPY, AUGUST MENTIVE AND

3115
01:54:54,650 --> 01:54:57,753
SUPPORTS, STILL A GOOD BALANCE

3116
01:54:57,753 --> 01:54:59,322
BETWEEN PROMOTING THAT ARE OWN

3117
01:54:59,322 --> 01:55:00,857
SPEECH AND THERAPY VERSUS WHEN

3118
01:55:00,857 --> 01:55:05,761
THEY HAND OFF TO OTHER METHODS

3119
01:55:05,761 --> 01:55:08,164
AND YOU DISCUSS WITH HAND OFF

3120
01:55:08,164 --> 01:55:09,565
WHAT YOU MEAN?

3121
01:55:09,565 --> 01:55:11,901
>> MOST IMPORTANTLY IT
DOESN'T

3122
01:55:11,901 --> 01:55:13,402
HAVE TO BE A HANDS OFF USING

3123
01:55:13,402 --> 01:55:14,604
ASSISTIVE TECHNOLOGIES CAN

3124
01:55:14,604 --> 01:55:17,540
HAPPEN ALONG WITH USE OF SPEECH.

3125
01:55:17,540 --> 01:55:20,409
SO FOR ME I THINK INTRODUCING

3126
01:55:20,409 --> 01:55:24,747
COMMUNICATION TECHNOLOGIES RIGHT

3127
01:55:24,747 --> 01:55:26,549
AWAY FOR CHILDREN WHO NOT

3128
01:55:26,549 --> 01:55:29,752
MEETING THOSE EARLY MILESTONES

3129
01:55:29,752 --> 01:55:32,622
OR ARE LATE ON CROSSING

3130
01:55:32,622 --> 01:55:34,490
THRESHOLDS TOWARD 50%

3131
01:55:34,490 --> 01:55:35,625
INTELLIGIBILITY, IT IS NOT

3132
01:55:35,625 --> 01:55:37,326
EITHER/OR, IT IS BOTH AND.

3133
01:55:37,326 --> 01:55:39,362
ASSISTIVE TECHNOLOGIES CAN BE

3134
01:55:39,362 --> 01:55:40,630
USEFUL FOR SUPPORTING SPEECH

3135
01:55:40,630 --> 01:55:42,665
DEVELOPMENT AND ALSO ARE VERY

3136
01:55:42,665 --> 01:55:44,901
IMPORTANT FOR SUPPORTING

3137
01:55:44,901 --> 01:55:45,968
PLAINING DEVELOPMENT AND THE

3138
01:55:45,968 --> 01:55:47,436
UNDERSTANDING OF LANGUAGE AND

3139
01:55:47,436 --> 01:55:49,672
ENGAGEMENT SOCIAL PARTICIPATION 

3140
01:55:49,672 --> 01:55:50,373
I THINK IT IS IMPORTANT WE

3141
01:55:50,373 --> 01:55:52,408
EMPHASIZE TO FAMILIES THAT THESE

3142
01:55:52,408 --> 01:55:54,110
TOOLS ALL WORK TOGETHER KIND OF

3143
01:55:54,110 --> 01:55:59,215
LIKE A WALKER. TO SUPPORT

3144
01:55:59,215 --> 01:55:59,548
COMMUNICATION.

3145
01:55:59,548 --> 01:56:01,484
>> I THINK ALSO IT IS
IMPORTANT

3146
01:56:01,484 --> 01:56:03,686
TO REALIZE HOW IMPORTANT

3147
01:56:03,686 --> 01:56:05,521
COMMUNICATION IS, FOR A KID IN

3148
01:56:05,521 --> 01:56:08,157
TERMS OF CONTEXT SO CAN YOU

3149
01:56:08,157 --> 01:56:09,392
SPEAK HOW THAT CONNECTS TO

3150
01:56:09,392 --> 01:56:10,593
SOCIAL DEVELOPMENT AND

3151
01:56:10,593 --> 01:56:11,060
ISOLATION?

3152
01:56:11,060 --> 01:56:14,130
>> ABSOLUTELY. SO IT IS

3153
01:56:14,130 --> 01:56:16,732
CRITICAL, EVEN IN VERY EARLIEST

3154
01:56:16,732 --> 01:56:18,267
INTERACTIONS I HAVE A COUPLE OF

3155
01:56:18,267 --> 01:56:19,702
POST DOCS IN MY LABORATORY WHO

3156
01:56:19,702 --> 01:56:21,137
ARE INTERESTED IN EARLY PARENT

3157
01:56:21,137 --> 01:56:22,405
CHILD INTERACTION AND WHEN YOU

3158
01:56:22,405 --> 01:56:23,806
LOOK AT CHILDREN WHO HAVE SEVERE

3159
01:56:23,806 --> 01:56:27,576
MOTOR IMPAIRMENT THE WAYS THEY

3160
01:56:27,576 --> 01:56:29,145
INTERACT WITH PARENTS ARE

3161
01:56:29,145 --> 01:56:31,180
DIFFERENT PARENTS DOING MORE

3162
01:56:31,180 --> 01:56:33,382
CARES, HOEDING HEADS UP WIPING

3163
01:56:33,382 --> 01:56:34,917
MOUTHS, THEY ARE SITTING IN THE

3164
01:56:34,917 --> 01:56:36,686
BABY IN FRONT OF THEM RATHER

3165
01:56:36,686 --> 01:56:38,821
THAN FACING THEM WHEN SITTING ON

3166
01:56:38,821 --> 01:56:41,057
THE FLOOR. AND SO WE ARE VERY,

3167
01:56:41,057 --> 01:56:43,392
VERY DIFFERENT DYNAMICS IN

3168
01:56:43,392 --> 01:56:44,760
PARENT CHILD INTERACTION, IT

3169
01:56:44,760 --> 01:56:46,629
HASN'T BEEN STUDIED.  IT IS NOT

3170
01:56:46,629 --> 01:56:48,164
WELL UNDERSTOOD HOW THAT

3171
01:56:48,164 --> 01:56:50,099
INFLUENCES COGNITIVE DEVELOPMENT

3172
01:56:50,099 --> 01:56:51,267
LANGUAGE DEVELOPMENT SOCIAL

3173
01:56:51,267 --> 01:56:52,635
DEVELOPMENT SO THAT IS A REALLY

3174
01:56:52,635 --> 01:56:54,937
IMPORTANT AREA FOR FUTURE

3175
01:56:54,937 --> 01:56:56,405
RESEARCH TO DEVELOP

3176
01:56:56,405 --> 01:56:58,107
INTERVENTIONS THAT HELP PARENTS

3177
01:56:58,107 --> 01:57:00,343
ENGAGE WITH CHILDREN WITH MOTOR

3178
01:57:00,343 --> 01:57:02,311
IMPAIRMENT TO MAXIMIZE THESE

3179
01:57:02,311 --> 01:57:04,480
FACE TO FACE INTERACTIONS TO

3180
01:57:04,480 --> 01:57:05,581
SUPPORT SPEECH AND SUPPORT

3181
01:57:05,581 --> 01:57:09,819
LANGUAGE DEVELOPMENT.

3182
01:57:09,819 --> 01:57:14,357
>> ONE THING MORE AWARE OF
IS

3183
01:57:14,357 --> 01:57:15,825
ABLEISM IS HOW SUPERFICIAL

3184
01:57:15,825 --> 01:57:17,026
THINGS ABOUT PEOPLE WITH

3185
01:57:17,026 --> 01:57:18,928
DISABILITIES INHIBITS OR AFFECT

3186
01:57:18,928 --> 01:57:20,463
HOW PEOPLE RELATE TO THEM AND

3187
01:57:20,463 --> 01:57:23,265
VERY NEGATIVE WAY, ARE YOU

3188
01:57:23,265 --> 01:57:25,368
SEEING THAT IN TERMS OF SPEECH

3189
01:57:25,368 --> 01:57:27,470
OR LANGUAGE BRIGHTLY ENGAGING

3190
01:57:27,470 --> 01:57:29,205
BECAUSE OF THE SUPERFISHIALITY

3191
01:57:29,205 --> 01:57:32,141
OF SPEECH GETTING TREATED IN

3192
01:57:32,141 --> 01:57:35,111
INFERIOR WAY? ARE YOU SEEING

3193
01:57:35,111 --> 01:57:35,378
ABLEISM --

3194
01:57:35,378 --> 01:57:37,713
>> YES, THIS IS WHERE

3195
01:57:37,713 --> 01:57:39,115
NEURODIVERSITY MOVEMENT COMES

3196
01:57:39,115 --> 01:57:40,783
INTO PLAY WITH THIS POPULATION

3197
01:57:40,783 --> 01:57:43,285
IS THINKING ABOUT HOW WE CAN DO

3198
01:57:43,285 --> 01:57:44,787
PARTNER TRAINING PARTNER

3199
01:57:44,787 --> 01:57:46,822
SUPPORTS FOR PARENTS AND ALSO

3200
01:57:46,822 --> 01:57:49,558
FOR PEERS, AND TEACHERS, OTHER

3201
01:57:49,558 --> 01:57:52,561
DARE PROVIDERS PEOPLE IN

3202
01:57:52,561 --> 01:57:53,796
COMMUNITY TO SUPPORT

3203
01:57:53,796 --> 01:57:55,264
COMMUNICATION AND NOT SPEAK FOR

3204
01:57:55,264 --> 01:57:57,533
SOMEONE NOT TRY MAKE IT EASY

3205
01:57:57,533 --> 01:57:59,268
ASKING YES NO QUESTION BUT TO

3206
01:57:59,268 --> 01:58:02,171
OFFER OPPORTUNITIES FOR FULL

3207
01:58:02,171 --> 01:58:03,105
COMMUNICATION PARTICIPATION

3208
01:58:03,105 --> 01:58:04,540
UNDERSTANDING IT WILL TAKE

3209
01:58:04,540 --> 01:58:07,009
LONGER WHEN SOMEONE HAS

3210
01:58:07,009 --> 01:58:07,677
DISARTHEROIA OR SOMEONE IS USING

3211
01:58:07,677 --> 01:58:09,979
A COMMUNICATION DEVICE OR THE

3212
01:58:09,979 --> 01:58:12,882
TWO OF THESE MODALITIES BLENDED

3213
01:58:12,882 --> 01:58:14,850
TOGETHER RATE OF COMMUNICATION

3214
01:58:14,850 --> 01:58:17,453
WILL TAKE LONGER AND WE HAVE TO

3215
01:58:17,453 --> 01:58:18,888
BE TOLERANT OF THAT, THAT IS

3216
01:58:18,888 --> 01:58:21,190
COMMUNICATION GETTING THE WORD

3217
01:58:21,190 --> 01:58:24,760
TO SUPPORT INDEPENDENCE Z

3218
01:58:24,760 --> 01:58:25,661
SELF-DETERMINATION FOR

3219
01:58:25,661 --> 01:58:27,163
INDIVIDUALS TO CP ACROSS THE

3220
01:58:27,163 --> 01:58:31,467
LIFE SPAN. 

3221
01:58:31,467 --> 01:58:33,302
>> TIIAN YOU HAVE GREAT

3222
01:58:33,302 --> 01:58:34,603
INTRODUCTION TO SOME OF THE

3223
01:58:34,603 --> 01:58:36,038
TECHNOLOGIES AND OPPORTUNITIES

3224
01:58:36,038 --> 01:58:38,774
AVAILABLE FOR KIDS WITH CEREBRAL

3225
01:58:38,774 --> 01:58:42,411
PALSY. I WANTED TO THINK BETWEEN

3226
01:58:42,411 --> 01:58:43,746
THERAPIES AND -- THAT ARE

3227
01:58:43,746 --> 01:58:48,084
THERAPEUTIC TRYING TO PROMOTE

3228
01:58:48,084 --> 01:58:50,486
VERSUS THINGS MORE SUPPORTIVE.

3229
01:58:50,486 --> 01:58:52,054
HOW DO YOU INTEGRATE THOSE AND

3230
01:58:52,054 --> 01:58:53,122
HOW PARENTS SHOULD DEAL WITH

3231
01:58:53,122 --> 01:58:56,092
THEM?

3232
01:58:56,092 --> 01:58:58,427
>> FIRST, NICE TO SEE YOU.
I

3233
01:58:58,427 --> 01:59:00,496
WANT TO THANK ALL THE

3234
01:59:00,496 --> 01:59:03,432
ORGANIZERS, THIS HAS BEEN A

3235
01:59:03,432 --> 01:59:05,935
GREAT CONFERENCE. MANY YEARS AGO

3236
01:59:05,935 --> 01:59:08,971
MORE THAN FIVE YEARS AGO TO SEE

3237
01:59:08,971 --> 01:59:11,040
THE GROWTH IN FUNDING AND TALENT

3238
01:59:11,040 --> 01:59:14,043
IS REMARKABLE AND EXCITING. SO

3239
01:59:14,043 --> 01:59:15,611
THANKS FOR LETTING ME BE PART OF

3240
01:59:15,611 --> 01:59:16,712
THIS. LET ME UNDERSTAND YOUR

3241
01:59:16,712 --> 01:59:17,913
QUESTION. YOU ARE TRYING TO

3242
01:59:17,913 --> 01:59:20,616
DIFFERENTIATE ARE YOU SAYING

3243
01:59:20,616 --> 01:59:23,185
THAT THE THINGS I'M PROPOSING

3244
01:59:23,185 --> 01:59:25,988
AROUND THERAPIES OR WHAT ARE YOU

3245
01:59:25,988 --> 01:59:26,455
TRYING TO --

3246
01:59:26,455 --> 01:59:31,961
>> I'M SAYING BOTH BUT IN
THE

3247
01:59:31,961 --> 01:59:32,495
PARENTS MINDS THAT HE ARE

3248
01:59:32,495 --> 01:59:33,762
THINKING HOW I -- WHAT THERAPIES

3249
01:59:33,762 --> 01:59:37,600
AND SUPPORTS MY KIDS NEED AND ON

3250
01:59:37,600 --> 01:59:40,202
THE OTHER HAND THEY ARE THINKING

3251
01:59:40,202 --> 01:59:41,537
INDEPENDENTLY ABOUT WHAT CAN

3252
01:59:41,537 --> 01:59:42,872
HELP MY KID FUNCTION IN THIS

3253
01:59:42,872 --> 01:59:47,409
SCHOOL IN THE HOME AND SO ON.

3254
01:59:47,409 --> 01:59:49,879
YET INTEGRATED.  CAN YOU HELP

3255
01:59:49,879 --> 01:59:51,447
WAYS PARENTS THINK ABOUT THERAPY

3256
01:59:51,447 --> 01:59:52,381
VERSUS SUPPORTS. 

3257
01:59:52,381 --> 01:59:57,753
>> I THINK REALLY GOOD
EXAMPLE

3258
01:59:57,753 --> 01:59:59,488
ARE ROBOTIC FOR EXAMPLE. IN MY

3259
01:59:59,488 --> 02:00:00,789
LAB WE ARE WORKING FOR DEVICES

3260
02:00:00,789 --> 02:00:03,325
THAT ARE EXERCISE DEVICES, THAT

3261
02:00:03,325 --> 02:00:05,928
KIDS BECAUSE WHAT I TRY TO DO IN

3262
02:00:05,928 --> 02:00:07,830
OUR RESEARCH IS TO GET THINGS

3263
02:00:07,830 --> 02:00:09,298
INTO THE HOME BECAUSE BECAUSE

3264
02:00:09,298 --> 02:00:11,300
THEY NEED MORE INTENSE

3265
02:00:11,300 --> 02:00:12,067
INTERVENTION THAN CAN BE

3266
02:00:12,067 --> 02:00:14,370
PROVIDED IN PHYSICAL THERA THERF

3267
02:00:14,370 --> 02:00:18,374
IT IS SOMETHING DONE WITH A MART

3268
02:00:18,374 --> 02:00:20,342
DEVICE, THOUGH EXPENSIVE NOW

3269
02:00:20,342 --> 02:00:22,278
EVENTUALLY WON'T BE THAT

3270
02:00:22,278 --> 02:00:23,679
EXPENSIVE BUT NEED MORE

3271
02:00:23,679 --> 02:00:24,813
DEVELOPMENT. ANOTHER GREAT --

3272
02:00:24,813 --> 02:00:28,751
SOME OF THE ROBOTIC JUST AN

3273
02:00:28,751 --> 02:00:30,019
EXAMPLE THE ROBOT OUT THERE THAT

3274
02:00:30,019 --> 02:00:33,122
A LOT OF FAMILIES ARE STARTING

3275
02:00:33,122 --> 02:00:36,992
TO USE, IT IS (INAUDIBLE) 4'S

3276
02:00:36,992 --> 02:00:38,594
AND 5s, IT IS WONDERFUL

3277
02:00:38,594 --> 02:00:39,862
BECAUSE YOU SEE CHILDREN WALKING

3278
02:00:39,862 --> 02:00:41,130
IN THE PARK WITH THEIR FAMILIES

3279
02:00:41,130 --> 02:00:43,265
FOR THE FIRST TIME, IT IS ABOUT

3280
02:00:43,265 --> 02:00:44,433
PARTICIPATION EVEN THOUGH WE

3281
02:00:44,433 --> 02:00:46,268
WILL HAVE ADDED HEALTH BENEFITS

3282
02:00:46,268 --> 02:00:48,137
LIKELY, IT IS REALLY ABOUT

3283
02:00:48,137 --> 02:00:54,143
PARTICIPATION SO I THINK THAT

3284
02:00:54,143 --> 02:00:55,311
YOU ARE RIGHT, SOME ARE

3285
02:00:55,311 --> 02:00:57,680
THERAPIES AND SOME TO IMPROVE

3286
02:00:57,680 --> 02:00:58,747
IMINTERACTION AND INDEPENDENT IN

3287
02:00:58,747 --> 02:01:02,918
EVERY DAY LIFE.

3288
02:01:02,918 --> 02:01:04,153
>> THESE TECHNOLOGIES ARE

3289
02:01:04,153 --> 02:01:05,721
EXCITING BUT HOW TO PROMOTE

3290
02:01:05,721 --> 02:01:09,158
EQUITABLE ACCESS SO THAT THESE

3291
02:01:09,158 --> 02:01:12,661
DEVELOPED BROADER AUDIENCES AND

3292
02:01:12,661 --> 02:01:14,597
HOW SUPPORTIVE IS THE CURRENT

3293
02:01:14,597 --> 02:01:15,698
HEALTHCARE SYSTEM? IN TERMS OF

3294
02:01:15,698 --> 02:01:17,199
PROVIDING ACCESS?

3295
02:01:17,199 --> 02:01:20,035
>> ALL BIG QUESTIONS. I
WANT TO

3296
02:01:20,035 --> 02:01:21,036
MAKE SURE EVERYBODY REALIZE

3297
02:01:21,036 --> 02:01:22,605
THESE ARE YOUNG FIELDS ARE HIGH

3298
02:01:22,605 --> 02:01:27,276
POTENTIAL. SO IT WAS HARD TO DO

3299
02:01:27,276 --> 02:01:28,177
THAT STUFF EVEN SOME OF THE

3300
02:01:28,177 --> 02:01:30,446
DEVICES STACEY AND I USING FOR

3301
02:01:30,446 --> 02:01:33,482
BABIES THEY ARE IN THE CLINIC

3302
02:01:33,482 --> 02:01:35,050
PEOPLE CAN'T GET THEM, THESE

3303
02:01:35,050 --> 02:01:37,686
AREN'T ACCESSIBLE YET. SO THESE

3304
02:01:37,686 --> 02:01:39,321
WILL BE COMING IT DOESN'T HELP

3305
02:01:39,321 --> 02:01:42,324
FAMILIES SO MUCH NOW BUT THE

3306
02:01:42,324 --> 02:01:45,427
MORE INFO WE GET FOR FAMILIES TO

3307
02:01:45,427 --> 02:01:48,397
MAKE THE -- THAT WILL BE HELPFUL

3308
02:01:48,397 --> 02:01:50,466
IS KEY TO DEVELOPING THE BEST

3309
02:01:50,466 --> 02:01:52,968
MORE QUICKLY.

3310
02:01:52,968 --> 02:01:54,770
>> SOME OF THE THINGS YOU
ARE

3311
02:01:54,770 --> 02:01:56,538
SHOWING WITH THE TECHNOLOGY

3312
02:01:56,538 --> 02:01:58,173
LOOKING AT BRAIN FUNCTION BRAIN

3313
02:01:58,173 --> 02:02:03,178
WAVES, IT IS REALLY INTERESTING

3314
02:02:03,178 --> 02:02:07,549
AND REVEALS ABOUT HOW CEREBRAL

3315
02:02:07,549 --> 02:02:09,418
PALSY ALTERS BRAIN FUNCTION OR

3316
02:02:09,418 --> 02:02:11,153
BRAIN TRIES TO WORK AROUND THOSE

3317
02:02:11,153 --> 02:02:13,088
THINGTHINGS. YOU CAN GET TREMENS

3318
02:02:13,088 --> 02:02:18,427
INSIGHT. HOW DO YOU DEAL WITH

3319
02:02:18,427 --> 02:02:19,395
HETEROGENEITY OF CEREBRAL PALSY

3320
02:02:19,395 --> 02:02:20,596
CAUSES AN FUNCTION?

3321
02:02:20,596 --> 02:02:24,900
>> WE JUST BECOME
CONVINCED EACH

3322
02:02:24,900 --> 02:02:27,269
CHILD IS THEIR OWN -- BRAIN IS

3323
02:02:27,269 --> 02:02:29,672
THEIR OWN PUZZLE TO SOLVE. WHEN

3324
02:02:29,672 --> 02:02:32,808
MICHAEL WAS TALKING ABOUT N OF 1

3325
02:02:32,808 --> 02:02:37,212
STUDIES, GENETIC PROFILE HOW A

3326
02:02:37,212 --> 02:02:37,913
THEY WOULD CHOOSES TO REORGANIZE

3327
02:02:37,913 --> 02:02:39,281
BRAIN THROUGH DEVELOPMENT IS

3328
02:02:39,281 --> 02:02:42,651
TOTALLY DIFFERENT ACROSS KIDS.  

3329
02:02:42,651 --> 02:02:44,586
I GET NERVOUS WE DO THINGS,

3330
02:02:44,586 --> 02:02:47,122
PRESCRIBE TREATMENTS, AIMING TO

3331
02:02:47,122 --> 02:02:48,624
DO ONE THING BECAUSE THEY ASSUME

3332
02:02:48,624 --> 02:02:50,392
THAT IS THE PROBLEM ALL KIDS

3333
02:02:50,392 --> 02:02:54,229
HAVE AND WE COULD BE WRONG.

3334
02:02:54,229 --> 02:02:56,031
CHILDREN WITH UNILATERAL C, P,

3335
02:02:56,031 --> 02:02:57,800
ONE IS ONE SIDE OF THE BRAIN IS

3336
02:02:57,800 --> 02:02:58,734
CONTROLLING BOTH SIDES AND WILL

3337
02:02:58,734 --> 02:03:01,537
IS NO PATHW PATHWAYS VERSUS THED

3338
02:03:01,537 --> 02:03:02,905
THAT HAS PATHWAYS THAT YOU

3339
02:03:02,905 --> 02:03:04,573
SHOULD BE TARGETING THEY NEED TO

3340
02:03:04,573 --> 02:03:06,342
UNDERSTAND WHAT IS CAPABILITIES

3341
02:03:06,342 --> 02:03:07,943
OF EACH CHILD CHILD IS BEFORE WE

3342
02:03:07,943 --> 02:03:12,114
PRESCRIBE THESE THINGS. THESE

3343
02:03:12,114 --> 02:03:13,682
ARE THINGS THAT WILL COME.

3344
02:03:13,682 --> 02:03:19,188
>> I APPRECIATE THE
PERSPECTIVE

3345
02:03:19,188 --> 02:03:21,190
GIVEN ABOUT LONGITUDINAL FACTOR,

3346
02:03:21,190 --> 02:03:23,025
GOOD NEWS WE ARE CONSIDERING

3347
02:03:23,025 --> 02:03:29,965
DEALING WITH ADULTS WITH CP AN

3348
02:03:29,965 --> 02:03:32,401
KEEPING SUPPORT. ONE RESEARCH

3349
02:03:32,401 --> 02:03:33,268
QUESTION, YOU TALK ABOUT

3350
02:03:33,268 --> 02:03:36,705
SECONDARY ISSUES AND ARE THEY --

3351
02:03:36,705 --> 02:03:38,273
YOU CAN SEE THAT BEING

3352
02:03:38,273 --> 02:03:41,243
MARGINALLY CONSEQUENCE OF THE

3353
02:03:41,243 --> 02:03:43,512
MOTOR IMPAIRMENTS THE CONSTRAIN

3354
02:03:43,512 --> 02:03:45,948
ABNORMAL MOVEMENTS AND

3355
02:03:45,948 --> 02:03:50,352
INACTIVITY OR IS IT POSSIBLE

3356
02:03:50,352 --> 02:03:57,026
THAT CAUSES THE INSULTS IMPACTS

3357
02:03:57,026 --> 02:03:59,728
LEADS TO SUS L PATHOPHYSIOLOGY

3358
02:03:59,728 --> 02:04:05,100
THAT LEADS TO CARDIOVASCULAR

3359
02:04:05,100 --> 02:04:05,667
SYSTEMS?

3360
02:04:05,667 --> 02:04:06,769
>> GOOD QUESTION. YES IS
THE

3361
02:04:06,769 --> 02:04:08,771
ANSWER. I THINK IT IS BOTH AND

3362
02:04:08,771 --> 02:04:15,544
AND WHAT WE HEAR IS MY PHYSICIAN

3363
02:04:15,544 --> 02:04:17,379
SAID CP IS GETTING WORSE BUT I

3364
02:04:17,379 --> 02:04:19,448
KNOW CP IS A NON-PROGRESSIVE

3365
02:04:19,448 --> 02:04:21,984
CONDITION, WE ALL PROGRESS. WITH

3366
02:04:21,984 --> 02:04:23,685
AGE AND IT GIST ALONG WITH LEVEL

3367
02:04:23,685 --> 02:04:29,258
OF IMPAIRMENT, TYPE OF CP,

3368
02:04:29,258 --> 02:04:31,593
EXTENT SOMEBODY IS SEDENTARY MAY

3369
02:04:31,593 --> 02:04:33,095
HAVE FASTER OR ACCELERATED

3370
02:04:33,095 --> 02:04:34,797
PROGRESSION. THE MECHANISMS

3371
02:04:34,797 --> 02:04:36,799
LINKING PREMATURE AGING ARE TO

3372
02:04:36,799 --> 02:04:38,033
BE DETERMINED BUT THAT IS

3373
02:04:38,033 --> 02:04:40,002
SOMETHING THAT WE ARE ACTIVELY

3374
02:04:40,002 --> 02:04:45,507
TRYING TO UNDERSTAND WANDS

3375
02:04:45,507 --> 02:04:46,375
PURSUE BUT THERE IS SOMETHING

3376
02:04:46,375 --> 02:04:47,443
ABOUT THE INITIAL INSULT THAT

3377
02:04:47,443 --> 02:04:50,145
HAS TO DO WITH SOME OF THESE

3378
02:04:50,145 --> 02:04:52,681
DOWNSTREAM LATER ONSET EVENTSs

3379
02:04:52,681 --> 02:04:54,817
SPECIALRY RELATED TO COGNITIVE

3380
02:04:54,817 --> 02:04:56,084
HEALTH AND MENTAL HEALTH

3381
02:04:56,084 --> 02:04:58,987
DISORDERS. THAT IS TO BE

3382
02:04:58,987 --> 02:05:02,090
DETERMINED BUT MAKES SENSE

3383
02:05:02,090 --> 02:05:05,093
SOMETHING ASSOCIATED WITH

3384
02:05:05,093 --> 02:05:11,700
NEUROLOGIC INSULT CHRONIC

3385
02:05:11,700 --> 02:05:17,906
DISEASE PRESENCE LATER IN LIF L.

3386
02:05:17,906 --> 02:05:19,808
THIS PREMAMATURE AGING COMES UP

3387
02:05:19,808 --> 02:05:22,377
IN DOWN'S SYNDROME BUT THERE,

3388
02:05:22,377 --> 02:05:24,146
THERE'S PROBABLY GENETIC CAUSE

3389
02:05:24,146 --> 02:05:25,714
BECAUSE SOME OF THE THINGS ON

3390
02:05:25,714 --> 02:05:29,418
CHROMOSOME 21 RELATED TO SOME

3391
02:05:29,418 --> 02:05:30,919
AGING CONDITION. NOT SURE THAT

3392
02:05:30,919 --> 02:05:32,354
-- IF WE SHOULD USE THAT ANALOGY

3393
02:05:32,354 --> 02:05:36,391
OR NOT.  BY THE WAY THESE THINGS

3394
02:05:36,391 --> 02:05:37,793
ABOUT SECONDARY ISSUES HOW DOES

3395
02:05:37,793 --> 02:05:39,761
IT CONNECT BACK TO SOME OF THE

3396
02:05:39,761 --> 02:05:46,468
THINGS MIGHT OCCUR SPONTANEOUS

3397
02:05:46,468 --> 02:05:47,736
GENES COULD THAT CONNECT WITH

3398
02:05:47,736 --> 02:05:52,107
YOUR FINDINGS ON SECONDARY

3399
02:05:52,107 --> 02:05:52,341
ISSUES?

3400
02:05:52,341 --> 02:05:56,778
>> I NEED TO TALK WITH
MICHAEL,

3401
02:05:56,778 --> 02:05:58,780
I THINK SOME OF THE THINGS WE

3402
02:05:58,780 --> 02:06:01,183
SEE AS FUTURE MECHANISMS

3403
02:06:01,183 --> 02:06:06,088
UNDERLINE SOME OF THE DISEASE WE

3404
02:06:06,088 --> 02:06:08,323
ARE FINDING LIKE INFLAMMATION,

3405
02:06:08,323 --> 02:06:12,794
HYPERINFLAMMATION, OXIDATIVE

3406
02:06:12,794 --> 02:06:15,664
STRESS, THINGS THAT UNDERWRITE

3407
02:06:15,664 --> 02:06:17,399
THESE DISEASES CAN BE MECHANISMS

3408
02:06:17,399 --> 02:06:19,001
WE MINDS EVEN IN YOUNG ADULTS

3409
02:06:19,001 --> 02:06:21,370
WITH CP WITH THESE DISEASES WITH

3410
02:06:21,370 --> 02:06:22,304
CHRONIC CONDITIONS.

3411
02:06:22,304 --> 02:06:24,306
>> YET TO BE DETERMINED
BUT I

3412
02:06:24,306 --> 02:06:25,374
DEFINITELY THINK THAT IS THE

3413
02:06:25,374 --> 02:06:32,614
RIPE AREA FOR STUDY THAT EFFECT

3414
02:06:32,614 --> 02:06:34,416
CONNECTS BACK TO OUR PLAN, THAT

3415
02:06:34,416 --> 02:06:35,150
SHOWS A LONGITUDESNAL LIFE SPAN

3416
02:06:35,150 --> 02:06:37,152
APPROACH TO NOT ONLY CEREBRAL

3417
02:06:37,152 --> 02:06:38,487
PALSY BUT THE OTHER CHRONIC

3418
02:06:38,487 --> 02:06:43,825
CONDITIONS THAT WE DEAL WITH. 

3419
02:06:43,825 --> 02:06:45,561
YOU GAVE US SOME VERY GOOD

3420
02:06:45,561 --> 02:06:47,462
PERSPECTIVES THERE, WE HAVE TO

3421
02:06:47,462 --> 02:06:51,199
HEAR THOSE MESSAGES. HOW MUCH OF

3422
02:06:51,199 --> 02:06:54,503
THAT HAS TO DO WITH THE WAY

3423
02:06:54,503 --> 02:07:05,047
CLINICIANINGS ARE TAUGHT IN PAIN

3424
02:07:05,614 --> 02:07:06,315
AND RACIAL CHILDRENS SO HOW MUCH

3425
02:07:06,315 --> 02:07:07,583
IS THAT CAN BE TAUGHT IN CONTEXT

3426
02:07:07,583 --> 02:07:08,383
OF CLINICAL EDUCATION?

3427
02:07:08,383 --> 02:07:10,752
>> ABSOLUTELY. AT THE

3428
02:07:10,752 --> 02:07:12,154
APPRENTICESHIP MODEL OF MEDICAL

3429
02:07:12,154 --> 02:07:15,057
EDUCATION EXACERBATES THIS. IF

3430
02:07:15,057 --> 02:07:18,193
IRELATIVELY SMALL SUBSET OF

3431
02:07:18,193 --> 02:07:20,395
PEOPLE PROVIDING THE TRAINING TO

3432
02:07:20,395 --> 02:07:24,032
PEOPLE WHO GO OUT INTO CLINICAL

3433
02:07:24,032 --> 02:07:26,234
PRACTICE ON THEIR OWN, THAT ALSO

3434
02:07:26,234 --> 02:07:29,304
MEANS SMALLER NUMBER OF PEOPLE

3435
02:07:29,304 --> 02:07:30,639
THAT NEED TO BE RETHINK THEIR

3436
02:07:30,639 --> 02:07:36,845
APPROACH OR ATTITUDE THIS GOES

3437
02:07:36,845 --> 02:07:38,714
BEYOND JUST MEDICAL TRAINING AND

3438
02:07:38,714 --> 02:07:41,216
SOMETHING THAT IS PERVASIVE

3439
02:07:41,216 --> 02:07:43,185
ACROSS THE ENTIRE NICU, THAT

3440
02:07:43,185 --> 02:07:44,419
REALLY EXCELLENT STUDY

3441
02:07:44,419 --> 02:07:47,956
HIGHLIGHTED EARLIER, THAT THE

3442
02:07:47,956 --> 02:07:50,125
PARENTS DESCRIBED DIFFERENCE NOT

3443
02:07:50,125 --> 02:07:51,727
JUST IN THE PHYSICIANS TAKING

3444
02:07:51,727 --> 02:07:52,995
CARE OF PATIENTS BUT EVERY

3445
02:07:52,995 --> 02:07:55,364
SINGLE PERSON WHO INTERACTED

3446
02:07:55,364 --> 02:07:58,734
WITH THEM INCLUDING PHYSICIAN,

3447
02:07:58,734 --> 02:08:00,602
NURSES RESPIRATORY THERAPIST,

3448
02:08:00,602 --> 02:08:02,371
PHYSICAL OCCUPATIONAL THERAPISTS

3449
02:08:02,371 --> 02:08:04,673
ACROSS THE ENTIRE CARE SPECTRUM

3450
02:08:04,673 --> 02:08:06,341
THAT THEY EXPERIENCE WHILE IN

3451
02:08:06,341 --> 02:08:11,713
THE NICU. FOR YOU THINKING OUR

3452
02:08:11,713 --> 02:08:13,982
APPROACH, TO CARE IS ESSENTIAL

3453
02:08:13,982 --> 02:08:15,584
TO TRY TO ADDRESS THIS MOVING

3454
02:08:15,584 --> 02:08:18,787
FORWARD. 

3455
02:08:18,787 --> 02:08:22,257
>> RAISE SENSITIVITY. AT
THE

3456
02:08:22,257 --> 02:08:23,392
OTHER END HOW MUCH CAN WE HELP

3457
02:08:23,392 --> 02:08:26,194
IN TERMS OF HOW WE EVALUATE

3458
02:08:26,194 --> 02:08:27,462
RESEARCH FINDINGS AND THE PEER

3459
02:08:27,462 --> 02:08:29,598
REVIEW PROCESS TO MAKE SURE THAT

3460
02:08:29,598 --> 02:08:33,735
PEOPLE HAVEN'T FALLEN DOWN TO

3461
02:08:33,735 --> 02:08:42,644
THESE MADE FALSE ASSUMPTION?

3462
02:08:42,644 --> 02:08:44,946
A LOT OF ICU CARE IN GENERAL IS

3463
02:08:44,946 --> 02:08:48,216
USING GREATER DEGREES OF MACHINE

3464
02:08:48,216 --> 02:08:48,850
LEARNING EXCUSE ANALYSIS TO

3465
02:08:48,850 --> 02:08:50,152
MANAGE HUGE AMOUNTS OF DATA THAT

3466
02:08:50,152 --> 02:08:58,293
WE RECEIVE ABOUT OUR PATIENTS.  

3467
02:08:58,293 --> 02:09:00,729
MACHINE LEARNING ALGORITHMS, IT

3468
02:09:00,729 --> 02:09:03,098
REQUIRES THIS INTENTIONALITY

3469
02:09:03,098 --> 02:09:06,601
THAT IN RESEARCH PLAN OR PROJECT

3470
02:09:06,601 --> 02:09:09,871
IDEA, THAT THERE HAS BEEN

3471
02:09:09,871 --> 02:09:11,339
INTENTIONAL EFFORT TO IDENTIFY

3472
02:09:11,339 --> 02:09:15,677
SOURCES OF BIAS AND INCORPORATE

3473
02:09:15,677 --> 02:09:17,345
INTO THE MODEL. DURING THE TALK

3474
02:09:17,345 --> 02:09:22,651
ONE AREA IS OVERREPRESENTATION.

3475
02:09:22,651 --> 02:09:26,254
IN THE PAST TARGET PATIENT

3476
02:09:26,254 --> 02:09:29,558
ENROLLMENT TO MATCH POPULATION

3477
02:09:29,558 --> 02:09:34,529
PERCENTAGES IF THE POPULATION AT

3478
02:09:34,529 --> 02:09:36,331
YOUR INSTITUTION HOSPITAL OR

3479
02:09:36,331 --> 02:09:39,201
REGION IS 15% AFRICAN AMERICAN

3480
02:09:39,201 --> 02:09:41,870
POPULATION, HAVING 15% AFRICAN

3481
02:09:41,870 --> 02:09:43,271
AMERICAN IS OPTIMAL TARGET BUT

3482
02:09:43,271 --> 02:09:45,474
IT ISN'T BUT NUMBERS ARE TOO

3483
02:09:45,474 --> 02:09:48,009
SMALL TO TRY TO POTENTIALLY

3484
02:09:48,009 --> 02:09:51,947
DOUBLE THAT ENROLLMENT.

3485
02:09:51,947 --> 02:09:55,584
INTENTIONAL RECRUITMENT, OR

3486
02:09:55,584 --> 02:09:58,487
INCLUSION OF THESE VARIABLES AND

3487
02:09:58,487 --> 02:09:59,621
MODELS TO MAKE SURE THEY ARE NOT

3488
02:09:59,621 --> 02:10:00,255
MISSED.

3489
02:10:00,255 --> 02:10:05,494
>> IT IS IMPORTANT,
VALIDITY AND

3490
02:10:05,494 --> 02:10:06,428
GENERALIZABILITY OF OUR MODELS

3491
02:10:06,428 --> 02:10:08,430
THAT WE ARE INCLUDING DIVERSE

3492
02:10:08,430 --> 02:10:10,766
GROUPS AND, NOT JUST SUPERFICIAL

3493
02:10:10,766 --> 02:10:15,804
MATCHING BY THE SES WHICH WE CAN

3494
02:10:15,804 --> 02:10:18,206
GET, NOT REALLY -- AND YOU THINK

3495
02:10:18,206 --> 02:10:20,709
THAT SOME OF THESE DISPARITIES

3496
02:10:20,709 --> 02:10:22,144
FEED INTO THE ISSUES OF HOW

3497
02:10:22,144 --> 02:10:26,314
PEOPLE CAN -- HOW FAMILIES

3498
02:10:26,314 --> 02:10:31,086
CONTRIBUTE OR DECIDE TO GO INTO

3499
02:10:31,086 --> 02:10:33,989
SUPPORTING CLINICAL TRIALS. DOES

3500
02:10:33,989 --> 02:10:35,423
THAT FEED INTO THIS?

3501
02:10:35,423 --> 02:10:40,929
>> ABSOLUTELY. THERE ARE
FACTORS

3502
02:10:40,929 --> 02:10:42,197
THAT CONTRIBUTE TO WHETHER

3503
02:10:42,197 --> 02:10:45,367
FAMILIES ARE INTERESTED IN EVEN

3504
02:10:45,367 --> 02:10:47,302
HEARING ABOUT RESEARCH, IT IS

3505
02:10:47,302 --> 02:10:49,404
NOT UNCOMMON FOR OUR RESEARCH

3506
02:10:49,404 --> 02:10:50,772
COORDINATORS MERELY GO INTO THE

3507
02:10:50,772 --> 02:10:52,908
ROOM TO TALK TO A FAMILY ABOUT

3508
02:10:52,908 --> 02:10:54,442
PARTICIPATING IN ONE OF OUR

3509
02:10:54,442 --> 02:10:56,812
STUDIES. AND IMMEDIATELY BE SENT

3510
02:10:56,812 --> 02:10:58,613
AWAY. IT DOESN'T MATTER WHAT THE

3511
02:10:58,613 --> 02:10:59,848
CONTENT OF THE STUDY OR

3512
02:10:59,848 --> 02:11:01,883
OBJECTIVES OR AIMS ARE, JUST A

3513
02:11:01,883 --> 02:11:04,419
CONCEPT OF RESEARCH IN GENERAL

3514
02:11:04,419 --> 02:11:06,655
IS SOMETHING THEY ARE NOT

3515
02:11:06,655 --> 02:11:08,190
INTERESTED IN. THERE ARE MANY

3516
02:11:08,190 --> 02:11:09,524
FACTOR, RACE IS CERTAINLY A COME

3517
02:11:09,524 --> 02:11:15,330
PENT OF THAT. WE DISCUSSED THIS

3518
02:11:15,330 --> 02:11:17,132
IDEA THAT CAME UNIVERSITY OF

3519
02:11:17,132 --> 02:11:19,935
WISCONSIN AREA DEPRIVATION AND

3520
02:11:19,935 --> 02:11:22,571
WHICH IS NUMBER QUANTIFIES A LOT

3521
02:11:22,571 --> 02:11:26,341
OF FACTORS THAT GO INTO THE

3522
02:11:26,341 --> 02:11:27,776
ENVIRONMENT WHICH FAMILY COMES

3523
02:11:27,776 --> 02:11:30,879
FROM, ALL WHICH INFLUENCE ACCESS

3524
02:11:30,879 --> 02:11:33,181
TO MEDICAL CARE LOCALLY

3525
02:11:33,181 --> 02:11:35,550
PARTICULARLY WHO ARE DEALING

3526
02:11:35,550 --> 02:11:38,153
WITH CENTERS LIKE ALL OF OURS

3527
02:11:38,153 --> 02:11:39,521
THAT ARE TERTIARY REFERRAL

3528
02:11:39,521 --> 02:11:45,894
CENTERS WHICH MAYBE HOURS AWAY

3529
02:11:45,894 --> 02:11:48,930
FROM WHERE PEOPLE LIVE AND

3530
02:11:48,930 --> 02:11:50,465
FREQUENTLY NICUs THAT PARENTS

3531
02:11:50,465 --> 02:11:51,666
ARE NOT PRESENT, BECAUSE THEY

3532
02:11:51,666 --> 02:11:54,102
CAN'T BE, THEY LIVE TOO FAR

3533
02:11:54,102 --> 02:11:55,103
AWAY, THEY CAN'T BE THERE, THEY

3534
02:11:55,103 --> 02:11:56,705
HAVE CHILDREN, JOBS AND CAN'T BE

3535
02:11:56,705 --> 02:11:58,940
THERE THE WAY THEY WANT TO BE.

3536
02:11:58,940 --> 02:12:00,175
THAT PRESENCE OR ABSENCE IS

3537
02:12:00,175 --> 02:12:03,445
ANOTHER FACTOR WHICH INFLUENCES

3538
02:12:03,445 --> 02:12:05,146
THE WAY THAT MEDICAL STAFF

3539
02:12:05,146 --> 02:12:06,448
PERCEIVE THE FAMILY OR THE

3540
02:12:06,448 --> 02:12:09,618
PARENTS AND GUIDE THEIR E

3541
02:12:09,618 --> 02:12:10,085
DECISION MAKE MAKING.

3542
02:12:10,085 --> 02:12:11,987
>> LOOKING FOR INTERNAL

3543
02:12:11,987 --> 02:12:13,622
POTENTIALLY GENETIC OR

3544
02:12:13,622 --> 02:12:14,756
PHYSIOLOGIC DIFFERENCES IN SOME

3545
02:12:14,756 --> 02:12:19,694
OF THE ANSWERS EXTRAIN SICK

3546
02:12:19,694 --> 02:12:20,562
FACTORS AND SOCIO POLITICAL

3547
02:12:20,562 --> 02:12:24,866
ISSUES.  CIRCLING BACK TO SOME

3548
02:12:24,866 --> 02:12:28,136
OF THE EARLIER TALKS THERE'S

3549
02:12:28,136 --> 02:12:30,171
COMMENTS VARIOUS COMMENTS OF

3550
02:12:30,171 --> 02:12:32,974
PEOPLE ABOUT EARLY

3551
02:12:32,974 --> 02:12:36,244
INTERVENTIONS, IS AN AREA A LOOF

3552
02:12:36,244 --> 02:12:39,147
STUDIES OUT THERE, STACEY HOW DO

3553
02:12:39,147 --> 02:12:42,984
YOU REALLY TRY TO PROMOTE EARLY

3554
02:12:42,984 --> 02:12:46,021
AGGRESSIVE ENTERVENGES BORDERING

3555
02:12:46,021 --> 02:12:48,256
ON FIRST DIAGNOSE, BECOME

3556
02:12:48,256 --> 02:12:49,491
PARENTS FIRST BECOME AWARE SO

3557
02:12:49,491 --> 02:12:52,494
HOW DO YOU DEAL WITH RECRUITMENT

3558
02:12:52,494 --> 02:12:54,095
ISSUES AND NOTIFYING GETTING

3559
02:12:54,095 --> 02:12:56,097
THESE PEOPLE IN TOUCH WITH EARLY

3560
02:12:56,097 --> 02:12:57,365
STUDIES WHEN IT IS FAIRLY AT

3561
02:12:57,365 --> 02:13:00,869
EDGE OF DIAGNOSIS. 

3562
02:13:00,869 --> 02:13:02,604
>> ONE OF THE IMPORTANT
PIECES

3563
02:13:02,604 --> 02:13:05,173
IS SETTING THE STAGE FOR WHY WE

3564
02:13:05,173 --> 02:13:06,675
TREAT DEVELOPMENT DIFFERENTLY

3565
02:13:06,675 --> 02:13:08,143
THAN WE TREAT OTHER CONDITIONS

3566
02:13:08,143 --> 02:13:10,645
THAT WE TRYING TO PREVENT. WE

3567
02:13:10,645 --> 02:13:13,348
TRY TO PREVENT DIABETES, WE

3568
02:13:13,348 --> 02:13:14,449
TREAT CEREBRAL PALSY WE DON'T

3569
02:13:14,449 --> 02:13:16,718
TRY TO PREVENT KIDS FROM HAVING

3570
02:13:16,718 --> 02:13:19,554
SOME OF THESE DEFICITS OR DELAYS

3571
02:13:19,554 --> 02:13:20,956
MOST WHAT WE DO IS TWITE SEE IF

3572
02:13:20,956 --> 02:13:22,824
THEY HAVE IT AND DEAL WITH IT.  

3573
02:13:22,824 --> 02:13:24,526
IF I CAN SUPPORT A FAMILY, AND

3574
02:13:24,526 --> 02:13:27,262
YET THE FAMILIES ARE TO A POINT

3575
02:13:27,262 --> 02:13:28,763
THEY CAN SUPPORT THE CHILD MORE

3576
02:13:28,763 --> 02:13:30,198
EFFECTIVELY IN THE FIRST THREE

3577
02:13:30,198 --> 02:13:32,334
MONTHS OF LIFE, THEN THE FAMILY

3578
02:13:32,334 --> 02:13:34,269
CAN RUN WITH IT.  AND REALLY

3579
02:13:34,269 --> 02:13:35,136
KEEP SUPPORTING THE CHILD

3580
02:13:35,136 --> 02:13:36,805
DEVELOPMENT AND THAT IS A HUGE

3581
02:13:36,805 --> 02:13:39,441
COST SAVINGS. IF THAT CHILD

3582
02:13:39,441 --> 02:13:40,709
NEVER NEEDS INTERVENTION OR

3583
02:13:40,709 --> 02:13:42,177
NEEDS LESS INTERVENTION. OVER

3584
02:13:42,177 --> 02:13:44,446
TIME.  SO IT IS NOT THE

3585
02:13:44,446 --> 02:13:46,982
SUGGESTION THAT WE SHOULD PUT

3586
02:13:46,982 --> 02:13:49,551
EVERY CHILD IN CIMT IN THE NECU

3587
02:13:49,551 --> 02:13:51,119
THEY ARE GOING TO HAVE SIX HOURS

3588
02:13:51,119 --> 02:13:53,688
OF THERAPY A DAY, IT IS MAYBE

3589
02:13:53,688 --> 02:13:55,223
FIVE TO TEN VISITS OVER THE

3590
02:13:55,223 --> 02:13:56,491
FIRST THREE TO SIX MONTHS OF

3591
02:13:56,491 --> 02:13:57,392
LIFE, TO REALLY SUPPORT A

3592
02:13:57,392 --> 02:14:01,129
FAMILY.  THE OTHER THING WE NEED

3593
02:14:01,129 --> 02:14:02,497
TO CONSIDER IS ALTERNATIVE

3594
02:14:02,497 --> 02:14:03,932
OPTIONS HOW TO PROVIDE THOSE

3595
02:14:03,932 --> 02:14:08,870
INTERVENTIONS.  WE NEED EVIDENCE

3596
02:14:08,870 --> 02:14:10,138
FOR TELEMEDICINE WORK THE SAME

3597
02:14:10,138 --> 02:14:11,806
WAY, PROVIDE SERVICES IN PERSON.

3598
02:14:11,806 --> 02:14:13,975
THAT WILL HELP US DEAL WITH THE

3599
02:14:13,975 --> 02:14:16,778
HEALTH DISPARITY ISSUES,

3600
02:14:16,778 --> 02:14:17,679
POSSIBLY THOUGH WE KNOW

3601
02:14:17,679 --> 02:14:19,714
TELEMEDICINE HAS ALSO ISSUES

3602
02:14:19,714 --> 02:14:20,648
PANDERS HEALTH DISPARITIES BUT

3603
02:14:20,648 --> 02:14:22,083
IF YOU HAVE ACCESS TO SOME OF

3604
02:14:22,083 --> 02:14:24,519
THESE APPROACHES, WHERE YOU CAN

3605
02:14:24,519 --> 02:14:26,921
OFFER THE PARENTS EITHER OR, OR

3606
02:14:26,921 --> 02:14:28,990
SOME COMBINATION OF THE TWO,

3607
02:14:28,990 --> 02:14:31,026
THAT MAYBE YOU CAN PROVIDE BEST

3608
02:14:31,026 --> 02:14:33,695
ACT TEASES POSSIBLE.  FOR THAT.

3609
02:14:33,695 --> 02:14:34,696
THE OTHER THING I WANTED TO

3610
02:14:34,696 --> 02:14:36,331
POINT OUT, THAT RELATED TO THIS

3611
02:14:36,331 --> 02:14:38,900
IDEA OF RACEETH NITTY IS THAT WE

3612
02:14:38,900 --> 02:14:40,535
DON'T HAVE ENOUGH PEOPLE --

3613
02:14:40,535 --> 02:14:41,636
ETHNICITY WE DON'T HAVE ENOUGH

3614
02:14:41,636 --> 02:14:42,637
PEEP OF COLOR IN THE RESEARCH

3615
02:14:42,637 --> 02:14:45,206
TEAMS.  WE NEED PEOPLE WHO SPEAK

3616
02:14:45,206 --> 02:14:46,107
THE NATIVE LANGUAGE OF

3617
02:14:46,107 --> 02:14:47,409
PARTICIPANTS, AND WHO LOOK LIKE

3618
02:14:47,409 --> 02:14:48,877
THEM TO DO THE RECRUITMENT. AND

3619
02:14:48,877 --> 02:14:50,945
TO BE THE FRONT LINE INTERACTING

3620
02:14:50,945 --> 02:14:52,280
WITH FAMILIES, BECAUSE THAT IS

3621
02:14:52,280 --> 02:14:55,150
HOW YOU GET PEOPLE TO ENGAGE. IS

3622
02:14:55,150 --> 02:14:57,786
TO SAY WE HAVE PEOPLE WHO HELP

3623
02:14:57,786 --> 02:14:59,621
YOU AND SUPPORT THE QUESTIONS

3624
02:14:59,621 --> 02:15:01,389
YOU HAVE THAT RELATE TO YOU. WE

3625
02:15:01,389 --> 02:15:03,158
SEE ENROLLMENT DRASTICALLY

3626
02:15:03,158 --> 02:15:04,726
INCREASE WHEN WE MADE SURE

3627
02:15:04,726 --> 02:15:08,496
RESEARCH TEAM IS ADEQUATELY

3628
02:15:08,496 --> 02:15:10,799
DIVERSE.

3629
02:15:10,799 --> 02:15:12,200
>> GREAT POINT LOT OF
LEVELS

3630
02:15:12,200 --> 02:15:13,768
SOMEBODY IN THERE THAT BUILDS

3631
02:15:13,768 --> 02:15:17,505
TRUST EVEN IN TERMS OF MENT

3632
02:15:17,505 --> 02:15:18,206
MENTORING, RESEARCHERS HAVING

3633
02:15:18,206 --> 02:15:21,643
THE ROLE MODELS OUT THERE. THANK

3634
02:15:21,643 --> 02:15:23,011
YOU FOR BRINGING THAT UP.

3635
02:15:23,011 --> 02:15:24,412
KATHERINE IN YOU ARE YOU STUDY

3636
02:15:24,412 --> 02:15:26,714
OF COMMUNICATION, OUT OF YOUR

3637
02:15:26,714 --> 02:15:29,951
FOCUSING MORE ON SPEECH AND

3638
02:15:29,951 --> 02:15:31,352
LANGUAGE, BUT SOME BROUGHT UP

3639
02:15:31,352 --> 02:15:33,021
THE IDEA OF HEARING LOSS, HOW

3640
02:15:33,021 --> 02:15:34,756
MUCH DOES THAT TRUMP IN CP? AND

3641
02:15:34,756 --> 02:15:36,958
FIGURE INTO YOUR STUDY? YOU

3642
02:15:36,958 --> 02:15:38,426
DON'T WANT TO EXCLUDE THEM, YOU

3643
02:15:38,426 --> 02:15:39,561
WANT TO SUPPORT THEM.

3644
02:15:39,561 --> 02:15:43,531
>> ABSOLUTELY. SO PARENTS
PLAY A

3645
02:15:43,531 --> 02:15:45,366
CRITICAL ROLE IN SUPPORTING

3646
02:15:45,366 --> 02:15:48,336
SPEECH AND LANGUAGE DEVELOPMENT

3647
02:15:48,336 --> 02:15:52,407
FOR CHILDREN. EARLY INTERVENTION

3648
02:15:52,407 --> 02:15:54,042
BIRTH TO THREE WE ARE WORKING TO

3649
02:15:54,042 --> 02:15:57,078
SUPPORT PARENTS AND TEACH HOW TO

3650
02:15:57,078 --> 02:16:00,081
FOSTER ENTERA AND ENGAGEMENT,

3651
02:16:00,081 --> 02:16:02,784
HERBAL SPEECH PRODUCTION,

3652
02:16:02,784 --> 02:16:04,285
BABBLING PRE-VERBAL LINGUISTIC

3653
02:16:04,285 --> 02:16:05,920
FORMS OF COMMUNICATION AS WELL.

3654
02:16:05,920 --> 02:16:07,856
SO AGAIN, IT IS SUPPORTING

3655
02:16:07,856 --> 02:16:09,124
DEVELOPMENT ALL ALONG THE

3656
02:16:09,124 --> 02:16:13,461
CONTINUUM AS STACEY SAID. I

3657
02:16:13,461 --> 02:16:14,929
COMPLETELY AGREE WITH EVERYTHING

3658
02:16:14,929 --> 02:16:17,031
SHE SAID IN COMMUNICATION

3659
02:16:17,031 --> 02:16:19,901
MODALIMODALITY. IN TERMS OF SECY

3660
02:16:19,901 --> 02:16:22,370
ISSUES DISARTHEROIA MOTORRISH

3661
02:16:22,370 --> 02:16:24,205
ISSUES IS THERE A CORRELATION

3662
02:16:24,205 --> 02:16:26,741
BETWEEN FEEDING? THAT INVOLVES

3663
02:16:26,741 --> 02:16:28,443
THE SAME MOTOR SO USING

3664
02:16:28,443 --> 02:16:28,810
CONNECTIONS?

3665
02:16:28,810 --> 02:16:34,916
>> FOR SURE. WHEN WE THINK
ABOUT

3666
02:16:34,916 --> 02:16:36,618
SPEECH MECHANISM IT IS USING THE

3667
02:16:36,618 --> 02:16:37,619
SAME MUSCLES AND STRUCTURES FOR

3668
02:16:37,619 --> 02:16:39,487
DIFFERENT FUNCTIONS SO WE DO

3669
02:16:39,487 --> 02:16:44,259
SOMETIMES SEE DIFFERENCES.

3670
02:16:44,259 --> 02:16:46,227
BETWEEN SPEECH AND FEED DOMAIN

3671
02:16:46,227 --> 02:16:48,296
BUT WILL IS OVERLAP, AN AREA WE

3672
02:16:48,296 --> 02:16:50,532
NEED MORE RESEARCH. SO YOU CAN

3673
02:16:50,532 --> 02:16:54,569
HAVE FEEDING PROBLEMS AND NOT

3674
02:16:54,569 --> 02:16:56,337
HAVE SPEECH MOTOR DIFFICULTIES

3675
02:16:56,337 --> 02:16:57,572
SO WE HAVE WHOLE POPULATION OF

3676
02:16:57,572 --> 02:16:59,507
KIDS THAT HAVE FEEDING ISSUES

3677
02:16:59,507 --> 02:17:00,775
THAT ARE NOT NEUROLOGICAL IN

3678
02:17:00,775 --> 02:17:05,246
ORIGIN OR MOTOR IN ORIGIN. AND

3679
02:17:05,246 --> 02:17:06,247
WE HAVE KIDS WITH FEEDING

3680
02:17:06,247 --> 02:17:07,615
PROBLEMS VERY MUCH DUE TO ORAL

3681
02:17:07,615 --> 02:17:09,317
MOTOR DIFFICULTIES SO THAT

3682
02:17:09,317 --> 02:17:11,486
DIFFERENTIATION IS REALLY TRICKY

3683
02:17:11,486 --> 02:17:14,389
AN AGAIN THE OVERLAP BETWEEN

3684
02:17:14,389 --> 02:17:16,491
MATURATION AND DEVELOPMENT

3685
02:17:16,491 --> 02:17:19,561
VERSUS THE NEUROLOGICAL DAMAGE

3686
02:17:19,561 --> 02:17:21,596
TO THE SYSTEM WE HAVE A LOT OF

3687
02:17:21,596 --> 02:17:24,265
TROUBLE SEPARATING IN EARLY

3688
02:17:24,265 --> 02:17:27,202
EARLY DEVELOPMENT. THERE IS A

3689
02:17:27,202 --> 02:17:30,672
GREAT NEED FOR WORK THAT LOOKS

3690
02:17:30,672 --> 02:17:34,742
AT THESE INTERSECTION SPEECH

3691
02:17:34,742 --> 02:17:35,243
DEVELOPMENT AND FEEDING

3692
02:17:35,243 --> 02:17:36,544
DEVELOPMENT PARTICULARLY ORAL

3693
02:17:36,544 --> 02:17:39,547
PHASE FEEDING ISSUES. 

3694
02:17:39,547 --> 02:17:43,918
>> I'M SHIFTING TO DIANE'S
TALK,

3695
02:17:43,918 --> 02:17:45,720
THERE WAS A QUESTION ABOUT THE

3696
02:17:45,720 --> 02:17:46,888
APPLICATION OF SOME OF YOUR

3697
02:17:46,888 --> 02:17:50,491
APPROACHES TO LOWER EXTREMITY

3698
02:17:50,491 --> 02:17:54,696
TESTS. MOTOR CORTEX AND HOW YOU

3699
02:17:54,696 --> 02:17:58,466
LOOK AT LOW EARLY EXTREMITY

3700
02:17:58,466 --> 02:18:00,068
TESTS AND BECAUSE THEY GO DEEPER

3701
02:18:00,068 --> 02:18:08,209
IN THE BRAIN. HOW YOU DEAL WITH

3702
02:18:08,209 --> 02:18:08,676
THAT?

3703
02:18:08,676 --> 02:18:11,980
>> GREAT QUESTION. ANGLE

3704
02:18:11,980 --> 02:18:16,251
REPRESENTATIONS BREAK DOWN

3705
02:18:16,251 --> 02:18:22,190
CENTER SO EEG AND YOURS ARE BEST

3706
02:18:22,190 --> 02:18:29,764
CORTICAL SURFACE. EEG SOURCE --

3707
02:18:29,764 --> 02:18:34,302
WHAT WE CAN SHOW IS THE DO ANKLE

3708
02:18:34,302 --> 02:18:39,173
AS WELL AS RISK. WE DON'T KNOW

3709
02:18:39,173 --> 02:18:44,078
IF RIGHT HEMISPHERE OR LEFT

3710
02:18:44,078 --> 02:18:50,184
HEMISPHERE. DATA FOR THOSE IT IS

3711
02:18:50,184 --> 02:18:51,586
MORE CHALLENGING TO PROCESS

3712
02:18:51,586 --> 02:18:54,455
BECAUSE WE ALSO HAD VERY LARGE

3713
02:18:54,455 --> 02:18:56,758
ARTERY IN MIDDLE OF THE HEAD

3714
02:18:56,758 --> 02:19:00,628
WHICH IS A PROBLEM WE HAVE TO DO

3715
02:19:00,628 --> 02:19:02,630
TECHNIQUES ENGINEERING

3716
02:19:02,630 --> 02:19:03,665
COLLEAGUES BE ABLE TO HELP US

3717
02:19:03,665 --> 02:19:05,199
WITH THESE THINGS TO GET THROUGH

3718
02:19:05,199 --> 02:19:06,834
CHALLENGES TO STUDY IF WE WANTS

3719
02:19:06,834 --> 02:19:08,569
-- WHAT WE WANT TO STUDY. 

3720
02:19:08,569 --> 02:19:12,040
>> INTERESTING QUESTION
POSTED

3721
02:19:12,040 --> 02:19:14,876
ABOUT USING ROBOTS IN TRAINING

3722
02:19:14,876 --> 02:19:18,413
MODE AND TEAL WITH CP

3723
02:19:18,413 --> 02:19:24,319
PLASTICITY, VERSUS CP DYSTONIA,

3724
02:19:24,319 --> 02:19:25,119
DIFFERENT GOALS THERE.

3725
02:19:25,119 --> 02:19:27,422
>> THAT WAS A GREAT
QUESTION.

3726
02:19:27,422 --> 02:19:30,625
THINK ABOUT DYSTONIA WHERE THESE

3727
02:19:30,625 --> 02:19:32,226
CHILDREN HAVE SUDDEN CHANGE IN

3728
02:19:32,226 --> 02:19:35,630
POSTURE, MAKES A FIXED POSTURE

3729
02:19:35,630 --> 02:19:36,998
WHEN YOU TALK ABOUT POSITION

3730
02:19:36,998 --> 02:19:38,266
CONTROL THOSE ARE DISASTERS

3731
02:19:38,266 --> 02:19:39,701
BECAUSE THEY ARE TRYING TO

3732
02:19:39,701 --> 02:19:40,968
ENFORCE A TRAJECTORY AND THOUGH

3733
02:19:40,968 --> 02:19:45,373
THEY HAVE THE SAFETY, THEY WON'T

3734
02:19:45,373 --> 02:19:47,675
PUSH PAST CERTAIN LIMIT IT WON'T

3735
02:19:47,675 --> 02:19:48,910
WORK WELL WHEREAS THE MORE

3736
02:19:48,910 --> 02:19:52,013
INTEGRATED APPROACHES WHERE YOU

3737
02:19:52,013 --> 02:19:53,147
INJECTING TOUR OR EVEN MORE

3738
02:19:53,147 --> 02:19:56,551
IMPORTANTLY TRYING TO USE FES

3739
02:19:56,551 --> 02:19:58,319
CERTAIN TIES IF YOU HAVE A

3740
02:19:58,319 --> 02:20:01,923
STRONG DYSTONIC RESPONSE, FES IF

3741
02:20:01,923 --> 02:20:05,960
YOU HAVE SPINAL CORD BIG

3742
02:20:05,960 --> 02:20:08,262
ASSUMPTION CP YOU CAN INHIBIT

3743
02:20:08,262 --> 02:20:10,999
THAT ANTAGONISTIC MUSCLE

3744
02:20:10,999 --> 02:20:13,568
DYSTONIA SO FES SOLUTIONS WORK

3745
02:20:13,568 --> 02:20:16,738
BEST FOR THESE KIDS BUT THAT IS

3746
02:20:16,738 --> 02:20:18,639
ANOTHER CHALLENGE, I DON'T THINK

3747
02:20:18,639 --> 02:20:20,041
ANYBODY IS DEALING WITH YET.

3748
02:20:20,041 --> 02:20:21,976
>> SOMEBODY ELSE POST AD

3749
02:20:21,976 --> 02:20:23,945
QUESTION ABOUT SOME OF YOUR

3750
02:20:23,945 --> 02:20:26,881
BRAIN WAVE FREQUENCY LOOKING AT

3751
02:20:26,881 --> 02:20:32,053
TOTAL GROSS POPULATIONS OF

3752
02:20:32,053 --> 02:20:33,988
FIRING RATES AND THE CHANGE YOU

3753
02:20:33,988 --> 02:20:36,958
SEE BETWEEN INFANTS AND OLDER

3754
02:20:36,958 --> 02:20:38,493
KIDS IN TERMS OF THE EVOLUTION

3755
02:20:38,493 --> 02:20:41,929
OR MOVEMENT OF THE POWER OF THE

3756
02:20:41,929 --> 02:20:43,464
WAVES. HOW DO YOU INTERPRET

3757
02:20:43,464 --> 02:20:45,533
THAT? WHAT DOES THAT MEAN TO YOU

3758
02:20:45,533 --> 02:20:46,968
AS CLINICIAN SEEING THE CHANGES

3759
02:20:46,968 --> 02:20:50,805
OR NOT SEEING IN SOME KIDS?

3760
02:20:50,805 --> 02:20:52,340
>> SO WHAT WE ARE FINDING
IS

3761
02:20:52,340 --> 02:20:54,509
THERE ARE NORMAL PATTERNS OFFER

3762
02:20:54,509 --> 02:20:57,011
CLINICAL MATURATION.  WE DO ALL

3763
02:20:57,011 --> 02:20:59,380
OF OUR STUDIES IS AGE MATCH OR

3764
02:20:59,380 --> 02:21:02,950
IN THE BABIES WE MATCH THEM BY

3765
02:21:02,950 --> 02:21:04,485
THEIR MOTOR ABILITIES IN SOME

3766
02:21:04,485 --> 02:21:06,821
CASE LIKE HAVE THEY STARTED

3767
02:21:06,821 --> 02:21:08,456
WALKING OR NOT, THOUGH THEY CAN

3768
02:21:08,456 --> 02:21:10,258
BE DIFFERENT AGES SO A LOT OF

3769
02:21:10,258 --> 02:21:12,927
CHALLENGES TRYING TO STUDY KIDS

3770
02:21:12,927 --> 02:21:13,795
AND UNDERSTAND WHAT ARE THE

3771
02:21:13,795 --> 02:21:15,563
DIFFERENT FACTORS THAT ARE

3772
02:21:15,563 --> 02:21:17,465
DIFFERENTIATING THOSE BUT WE DO

3773
02:21:17,465 --> 02:21:20,468
SEE WE DO SHOW IS THERE IS A

3774
02:21:20,468 --> 02:21:23,838
MATURATION IN THESE MOTOR

3775
02:21:23,838 --> 02:21:25,139
FREQUENCYPS, THEY TEND TO BE

3776
02:21:25,139 --> 02:21:27,742
DELAYS IN KIDS WITH CP AND TEND

3777
02:21:27,742 --> 02:21:29,477
TO BE LOWER NOT PROCEEDING AS

3778
02:21:29,477 --> 02:21:30,878
QUICKLY. WHICH IS REALLY

3779
02:21:30,878 --> 02:21:33,114
INTERESTING BECAUSE I THINK

3780
02:21:33,114 --> 02:21:34,081
OTHERS KATHERINE TALKED ABOUT

3781
02:21:34,081 --> 02:21:37,885
THIS, THERE IS A HOE DEVELOPMENT

3782
02:21:37,885 --> 02:21:38,920
TRAJECTORIES ARE DIFFERENT IN

3783
02:21:38,920 --> 02:21:40,221
DIFFERENT POPULATIONS BUT YOU

3784
02:21:40,221 --> 02:21:41,022
DON'T -- FIRST YOU HAVE TO

3785
02:21:41,022 --> 02:21:43,057
UNDERSTAND WHAT THE NORMAL

3786
02:21:43,057 --> 02:21:44,158
TRAJECTORY IS AND NORMAL

3787
02:21:44,158 --> 02:21:47,862
RESPONSES YOU SEE. 

3788
02:21:47,862 --> 02:21:50,598
>> ANOTHER QUESTION POSTED
WHICH

3789
02:21:50,598 --> 02:21:52,099
MAYBE WE COULD STEP BACK AND

3790
02:21:52,099 --> 02:21:54,168
HAVE OTHER PANELISTS, THE

3791
02:21:54,168 --> 02:21:55,570
QUESTION ABOUT WHETHER WE COVER

3792
02:21:55,570 --> 02:21:58,039
WOMEN'S HEALTH ISSUES

3793
02:21:58,039 --> 02:22:03,678
ADEQUATELY. WONDER IF OUR OTHER

3794
02:22:03,678 --> 02:22:04,779
OCHER IS A OR SOMEBODY ELSE JUMP

3795
02:22:04,779 --> 02:22:07,849
IN TO PROVIDE CONTEXT ABOUT

3796
02:22:07,849 --> 02:22:11,285
WOMEN'S HEALTH INTERSECTING WITH

3797
02:22:11,285 --> 02:22:12,987
CEREBRAL PALSY RESEARCH?

3798
02:22:12,987 --> 02:22:14,622
>> SURE. I DON'T KNOW IF I
CAN

3799
02:22:14,622 --> 02:22:15,823
GET ON THE MAIN SCREEN.

3800
02:22:15,823 --> 02:22:18,559
>> WE HEAR YOU. THAT'S
FINE. 

3801
02:22:18,559 --> 02:22:22,063
>> I WANTED TO POINT OUT
THAT

3802
02:22:22,063 --> 02:22:24,699
NICHD HAS A LONG HISTORY OF

3803
02:22:24,699 --> 02:22:26,467
SUPPORTING RESEARCH IN PREGNANCY

3804
02:22:26,467 --> 02:22:29,770
AND REPRODUCTIVE HEALTH TARGETED

3805
02:22:29,770 --> 02:22:33,474
FOR WOMEN AND PEOPLE WHO HAVE

3806
02:22:33,474 --> 02:22:36,878
UTERUSES AND EXPERIENCE

3807
02:22:36,878 --> 02:22:40,615
PREGNANCY. LAST NOVEMBER WE HAD

3808
02:22:40,615 --> 02:22:48,523
A WORK SHOP ON PROMOTING

3809
02:22:48,523 --> 02:22:51,759
RESOURCES, FOR THE DEVELOPMENT

3810
02:22:51,759 --> 02:22:53,628
OR THE PROCESS OF TRANSITIONING

3811
02:22:53,628 --> 02:22:56,831
LIEU ADOLESCENCE AN RESOURCES

3812
02:22:56,831 --> 02:22:59,534
TARGETING AREA. REPRODUCTIVE

3813
02:22:59,534 --> 02:23:00,635
HEALTHCARE FOR PEOPLE WITH

3814
02:23:00,635 --> 02:23:03,237
DISABILITIES AS THEY TRANSITION

3815
02:23:03,237 --> 02:23:05,406
FROM ADOLESCENCE TO ADULTHOOD.

3816
02:23:05,406 --> 02:23:08,910
SO YOU CAN GO BACK AND WATCH

3817
02:23:08,910 --> 02:23:11,012
THAT WORKSHOP WHICH WE HELD IN

3818
02:23:11,012 --> 02:23:13,381
NOVEMBER IN COORDINATION WITH

3819
02:23:13,381 --> 02:23:15,716
NIDLER OUR SISTER AGENCY AT HHS.

3820
02:23:15,716 --> 02:23:18,119
WE FOLLOWED THAT UP WITH A

3821
02:23:18,119 --> 02:23:20,888
REQUEST FOR APPLICATIONS IN

3822
02:23:20,888 --> 02:23:23,190
MARCH. WE DO HAVE A SERIES OF

3823
02:23:23,190 --> 02:23:26,194
AWARDS THAT WE HOPE TO MAKE IN

3824
02:23:26,194 --> 02:23:28,396
FISCAL YEAR 23. WE ARE TALKING

3825
02:23:28,396 --> 02:23:31,065
ABOUT DISABILITY BROADLY BUT

3826
02:23:31,065 --> 02:23:33,701
CEREBRAL PALSY IS INCLUDED IN

3827
02:23:33,701 --> 02:23:37,371
THAT AND IS HIGHLIGHTED. I WANT

3828
02:23:37,371 --> 02:23:39,974
TO -- RACHEL FROM CEF WILL BE

3829
02:23:39,974 --> 02:23:41,342
PUTTING SOME RESOURCES THEY HAVE

3830
02:23:41,342 --> 02:23:43,211
DONE INCREDIBLE JOB OF PUTTING

3831
02:23:43,211 --> 02:23:46,881
RESOURCES OUT THERE FOR WOMEN AS

3832
02:23:46,881 --> 02:23:48,616
THEY TRANSITION. 

3833
02:23:48,616 --> 02:23:50,651
>> RACHEL, DO YOU WANT TO
ADD OR

3834
02:23:50,651 --> 02:23:51,552
YOU WANT TO POST IT FOR THE

3835
02:23:51,552 --> 02:23:54,822
GROUP TO SEE?

3836
02:23:54,822 --> 02:23:56,624
>> HAPPY TO ADD ANYTHING.
WE DID

3837
02:23:56,624 --> 02:24:00,795
A WOMEN'S HEALTH STUDY FROM 2016

3838
02:24:00,795 --> 02:24:02,930
TO 2019. AND LOTS OF RESOURCES

3839
02:24:02,930 --> 02:24:04,899
WERE DEVELOPED ACROSS THE LIFE

3840
02:24:04,899 --> 02:24:08,302
SPAN. SO IT WAS FOR ADOLESCENCE

3841
02:24:08,302 --> 02:24:09,437
THINKING SEXUAL HEALTH

3842
02:24:09,437 --> 02:24:11,038
GYNECOLOGICAL HEALTH,

3843
02:24:11,038 --> 02:24:12,073
PREPRODUCTIVE HEALTH, BREAST

3844
02:24:12,073 --> 02:24:15,876
HEALTHCARE. IN PARTNERSHIP WITH

3845
02:24:15,876 --> 02:24:17,745
SHELLEY (INAUDIBLE) LAB, BOSTON

3846
02:24:17,745 --> 02:24:19,380
CHILDREN'S HOSPITAL, COLUMBIA

3847
02:24:19,380 --> 02:24:22,316
UNIVERSITY AND UCLA MEDICAL

3848
02:24:22,316 --> 02:24:23,551
CENTER. ALL THOSE PIECES CAN BE

3849
02:24:23,551 --> 02:24:27,088
FOUND ON CP RESOURCE.ORG, I WILL

3850
02:24:27,088 --> 02:24:30,024
MAKE SURE THAT I POST AND ANSWER

3851
02:24:30,024 --> 02:24:31,492
IN THE Q&A SECTION FOR
ANYBODY

3852
02:24:31,492 --> 02:24:35,229
INTERESTED. THERE HAS BEEN

3853
02:24:35,229 --> 02:24:39,200
SUBSTANTIAL WORK DONE ON THIS,

3854
02:24:39,200 --> 02:24:40,868
BUT AS THERESA SAID WILL IS

3855
02:24:40,868 --> 02:24:42,336
EXCITING WORK ABOUT TO BE DONE

3856
02:24:42,336 --> 02:24:44,639
AS WELL. SO GREAT QUESTION.

3857
02:24:44,639 --> 02:24:46,073
SOMETHING THAT NOT JUST WOMEN'S

3858
02:24:46,073 --> 02:24:47,608
HEALTH ROUTE WE NEED TO MAKE

3859
02:24:47,608 --> 02:24:49,777
SURE MEN'S HEALTH AS WELL IS

3860
02:24:49,777 --> 02:24:53,648
PRIORITY HERE TOO. EXCITINGLY WE

3861
02:24:53,648 --> 02:24:56,350
HAVE GOT A PROJECT WITH MARK

3862
02:24:56,350 --> 02:24:58,419
PETERSON LOOKING AT PREVENTIVE

3863
02:24:58,419 --> 02:25:02,490
HEALTHCARE FOR ADULTS. VERY

3864
02:25:02,490 --> 02:25:03,491
THRILLED THAT QUESTION WAS ASKED

3865
02:25:03,491 --> 02:25:04,358
BECAUSE WE NEED TO MAKE SURE

3866
02:25:04,358 --> 02:25:05,593
THOSE ELEMENTS ARE FOCUSED ON

3867
02:25:05,593 --> 02:25:13,067
TOO.

3868
02:25:13,067 --> 02:25:17,238
>> NATELY YOU WANTED TO
ASK A

3869
02:25:17,238 --> 02:25:19,473
QUESTION TO DIANE ABOUT SOME OF

3870
02:25:19,473 --> 02:25:21,876
THE ALPHA BAND WAVES? AND

3871
02:25:21,876 --> 02:25:22,276
EVOLUTION?

3872
02:25:22,276 --> 02:25:23,577
>> YES SHE ANSWERED. THANK
YOU

3873
02:25:23,577 --> 02:25:24,145
SO MUCH.

3874
02:25:24,145 --> 02:25:27,214
>> OKAY. THESE

3875
02:25:27,214 --> 02:25:30,885
>> THANK YOU. I APPRECIATE
IT.

3876
02:25:30,885 --> 02:25:33,387
IT HAD TO DO WITH MATURATION OF

3877
02:25:33,387 --> 02:25:35,990
ALPHA OVER TIME. AND HOW YOU CAN

3878
02:25:35,990 --> 02:25:39,593
TELL THIS IS ACTUALLY A

3879
02:25:39,593 --> 02:25:40,761
SOMATOSENSORY OSCILLATION RATHER

3880
02:25:40,761 --> 02:25:41,896
THAN SOMETHING ELSE. SHE

3881
02:25:41,896 --> 02:25:44,598
ACTUALLY ANSWERED IT IN THE BEST

3882
02:25:44,598 --> 02:25:46,634
POSSIBLE WAY WHICH IS --

3883
02:25:46,634 --> 02:25:48,169
>> VERY GOOD. PART OF THIS

3884
02:25:48,169 --> 02:25:50,838
WORKSHOP IS NOT ONLY TO INSPIRE

3885
02:25:50,838 --> 02:25:54,642
PEOPLE OUT THERE LOOKING FOR

3886
02:25:54,642 --> 02:25:56,210
RESEARCH VERY IMPORTANT.

3887
02:25:56,210 --> 02:25:58,079
EXCITING RESEARCH QUESTION BUT

3888
02:25:58,079 --> 02:26:01,849
ALSO TO SHOW SUPPORT FOR THE

3889
02:26:01,849 --> 02:26:02,817
FAMILIES THAT ARE -- HAVE

3890
02:26:02,817 --> 02:26:05,586
CHILDREN WITH CP SO WE ARE

3891
02:26:05,586 --> 02:26:09,056
TRYING TO TALK ABOUT PARTICULARS

3892
02:26:09,056 --> 02:26:09,990
AND BROADLY AT THE SAME TIME.

3893
02:26:09,990 --> 02:26:13,861
LET ME GO BACK TO OTHER

3894
02:26:13,861 --> 02:26:22,503
QUESTIONS WE HAD THE QUESTION --

3895
02:26:22,503 --> 02:26:26,841
THERE WAS A QUESTION - FOR

3896
02:26:26,841 --> 02:26:27,508
ZACHARY ABOUT UNDERDIAGNOSIS OF

3897
02:26:27,508 --> 02:26:29,577
CP ESPECIALLY CERTAIN SUB TYPES

3898
02:26:29,577 --> 02:26:34,882
OF CP AND -- IN BLACK

3899
02:26:34,882 --> 02:26:36,550
POPULATIONS. 

3900
02:26:36,550 --> 02:26:39,286
>> I CAN DEFINITELY SPEAK
TO THE

3901
02:26:39,286 --> 02:26:42,823
EARLY STAGES OF THAT. ONE OF THE

3902
02:26:42,823 --> 02:26:43,858
MAJOR CHALLENGES THAT WE DEAL

3903
02:26:43,858 --> 02:26:47,895
WITH MANY THE NICU IS OUR LACK

3904
02:26:47,895 --> 02:26:49,997
OF PREDICTIVE ABILITY. WE IN

3905
02:26:49,997 --> 02:26:51,799
GENERAL ARE FAIRLY GOOD WITH

3906
02:26:51,799 --> 02:26:53,467
NEGATIVE PREDICTIVE VALUE, WE

3907
02:26:53,467 --> 02:26:56,403
CAN PUT MRIs AND PIECES OF

3908
02:26:56,403 --> 02:26:57,404
INFORMATION ABOUT A CLINICAL

3909
02:26:57,404 --> 02:26:59,206
COURSE TOGETHER TO SUGGEST THAT

3910
02:26:59,206 --> 02:27:01,509
THERE WON'T BE OUTCOME. BUT THE

3911
02:27:01,509 --> 02:27:04,478
REVERSE IS REALLY PROBLEMATIC OR

3912
02:27:04,478 --> 02:27:06,080
PREDICTIVE VALUE FOR MRI SCORING

3913
02:27:06,080 --> 02:27:08,215
SYSTEMS OUT THERE, INCLUDING

3914
02:27:08,215 --> 02:27:09,483
SOME OF THE QUANTITATIVE ONES

3915
02:27:09,483 --> 02:27:12,386
ARE REALLY CHALLENGING. ONE

3916
02:27:12,386 --> 02:27:14,255
POTENTIAL STRATEGY IS SOMETHING

3917
02:27:14,255 --> 02:27:16,657
THAT INCLUDES DATA FROM MANY

3918
02:27:16,657 --> 02:27:17,691
TYPES OF SOURCE, SOMETHING THAT

3919
02:27:17,691 --> 02:27:20,694
IS NOT JUST IMAGING ONLY OR

3920
02:27:20,694 --> 02:27:24,765
CLINICAL ONLY BUT INCLUDES ALL

3921
02:27:24,765 --> 02:27:29,603
SCALES OF DATA OF THOSE PLUS

3922
02:27:29,603 --> 02:27:30,638
SOCIOECONOMIC AND RACIAL

3923
02:27:30,638 --> 02:27:32,039
COMPONENTS TO TRY TO GIVE THE

3924
02:27:32,039 --> 02:27:37,111
BEST PREDICTION. IT IS STILL

3925
02:27:37,111 --> 02:27:38,212
SOMETHING THAT IS GOING TO BE A

3926
02:27:38,212 --> 02:27:39,980
CHALLENGE FOR A LONG TIME AND

3927
02:27:39,980 --> 02:27:42,283
REQUIRE A LOT OF THE EXPERTISE

3928
02:27:42,283 --> 02:27:45,753
OF MANY OTHER FOLKS TALKED TODAY

3929
02:27:45,753 --> 02:27:47,188
PICKING THAT UP FROM THERE

3930
02:27:47,188 --> 02:27:49,557
TAKING FORWARD INTO CHILDHOOD.

3931
02:27:49,557 --> 02:27:50,758
>> MARK THERE ARE COUPLE
OF

3932
02:27:50,758 --> 02:27:54,528
QUESTIONS PEOPLE POTED ABOUT THE

3933
02:27:54,528 --> 02:27:56,931
DIAGNOSIS OF PAIN AND -- POSTED

3934
02:27:56,931 --> 02:27:58,566
ABOUT PAIN AND SUPPORTIVE MENTAL

3935
02:27:58,566 --> 02:28:00,901
HEALTH ISSUES SO LET ME ASK THE

3936
02:28:00,901 --> 02:28:02,770
QUESTION OF -- FOR THE

3937
02:28:02,770 --> 02:28:04,271
CLINICIANS OUT THERE SUPPORTING

3938
02:28:04,271 --> 02:28:06,140
KIDS AND FAMILIES AND ADULTS

3939
02:28:06,140 --> 02:28:09,577
WITH CP, DO THEY UNDERSTAND,

3940
02:28:09,577 --> 02:28:11,545
HEAR THE NEEDS FOR PAIN

3941
02:28:11,545 --> 02:28:16,250
TREATMENT OR DO THEY KIND OF ON

3942
02:28:16,250 --> 02:28:17,518
FEW SKATE IN TERMS OF YOU HAVE A

3943
02:28:17,518 --> 02:28:19,854
BROADER CONDITION AND DOESN'T

3944
02:28:19,854 --> 02:28:23,290
GET AD -- OBFUSCATED. DOESN'T

3945
02:28:23,290 --> 02:28:24,425
GET ADEQUATE SUPPORT?

3946
02:28:24,425 --> 02:28:26,227
>> ARE YOU SAYING THIS
PAIN

3947
02:28:26,227 --> 02:28:28,128
ADEQUATELY ADDRESS IN CLINIC

3948
02:28:28,128 --> 02:28:30,764
ESPECIALLY ADULTS WITH CEREBRAL

3949
02:28:30,764 --> 02:28:30,965
PALSY?

3950
02:28:30,965 --> 02:28:32,399
>> THAT IS SOMEWHERE I'M
GOING.

3951
02:28:32,399 --> 02:28:34,101
SOME OF THE GERIATRICIANS GET

3952
02:28:34,101 --> 02:28:35,202
CRITICIZED THAT THEY ARE NOT

3953
02:28:35,202 --> 02:28:36,203
REALLY HEARING THE NEEDS OF

3954
02:28:36,203 --> 02:28:37,538
OLDER PEOPLE IN THEIR PRACTICE

3955
02:28:37,538 --> 02:28:40,908
AND I'M ASKING WHETHER HOW WE

3956
02:28:40,908 --> 02:28:41,976
SUPPORT PEOPLE THAT HAVE VARIOUS

3957
02:28:41,976 --> 02:28:44,078
CLINICAL ISSUES WITH CP WHEN

3958
02:28:44,078 --> 02:28:46,247
THEY HAVE SPECIFIC PAIN ISSUES

3959
02:28:46,247 --> 02:28:47,381
ARE THEY HEARD AND TREATD?

3960
02:28:47,381 --> 02:28:50,618
>> YEAH. I THINK BECAUSE
PEOPLE

3961
02:28:50,618 --> 02:28:53,554
WITH CP INHERENTLY HAVE HAD PAIN

3962
02:28:53,554 --> 02:28:54,855
PROBABLY THEIR ENTIRE LIVES IT

3963
02:28:54,855 --> 02:28:57,825
BECOMES NORMALIZED BUT IT ALSO

3964
02:28:57,825 --> 02:29:00,961
SEEMS AS THOUGH WHEN THEY BRING

3965
02:29:00,961 --> 02:29:02,529
PAIN UP IT IS ALMOST BRUSHED

3966
02:29:02,529 --> 02:29:04,365
UNDER THE RUG IN MANY CASES. SO

3967
02:29:04,365 --> 02:29:06,267
I DEFINITELY WOULD LIKE FOR

3968
02:29:06,267 --> 02:29:07,968
PEOPLE TO ADVOCATE FOR

3969
02:29:07,968 --> 02:29:09,236
THEMSELVES. THERE WAS EVEN ONE

3970
02:29:09,236 --> 02:29:10,671
COMMENT IN THE CHAT THAT SAID

3971
02:29:10,671 --> 02:29:12,206
YES, I HAVE PAIN. THIS IS A

3972
02:29:12,206 --> 02:29:13,641
NORMAL THING FOR ADULTS LIVING

3973
02:29:13,641 --> 02:29:17,745
WITH CP. IF YOU ASK A LOT OF

3974
02:29:17,745 --> 02:29:18,879
INDIVIDUALS THEY WILL SAY NO MY

3975
02:29:18,879 --> 02:29:20,915
PAIN IS FINE, I DON'T HAVE PAIN.

3976
02:29:20,915 --> 02:29:22,650
BUT IT IS BECAUSE THEY HAVE HAD

3977
02:29:22,650 --> 02:29:24,318
PAIN THEIR ENTIRE LIVES IT IS

3978
02:29:24,318 --> 02:29:25,753
IMPORTANT WE START TO UNDERSTAND

3979
02:29:25,753 --> 02:29:27,888
THE MECHANISMS OF PAIN ARE NOT

3980
02:29:27,888 --> 02:29:31,458
SO SIMPLE AS IT COMES FROM

3981
02:29:31,458 --> 02:29:34,061
SPASTIC MUSCLE OR JOINTS OR

3982
02:29:34,061 --> 02:29:36,263
CONTRACTIONS BUT OTHER TYPES OF

3983
02:29:36,263 --> 02:29:37,998
PAIN THAT HAVE BEEN HISTORICALLY

3984
02:29:37,998 --> 02:29:40,100
JUST NOT STUDIED A T ALL IN THIS

3985
02:29:40,100 --> 02:29:41,936
POPULATIPOPULATION. SO WE CAN LM

3986
02:29:41,936 --> 02:29:43,637
OTHER POPULATIONS THAT

3987
02:29:43,637 --> 02:29:46,273
EXPERIENCE WIDESPREAD PAIN. I

3988
02:29:46,273 --> 02:29:47,975
THINK THAT SHOULD HELP TO INFORM

3989
02:29:47,975 --> 02:29:49,143
TREATMENTS THAT ALIGNED WITH THE

3990
02:29:49,143 --> 02:29:51,378
PHENOTYPE OF PAIN. RATHER THAN

3991
02:29:51,378 --> 02:29:54,481
JUST SORT OF THE COPY PASTE PAIN

3992
02:29:54,481 --> 02:29:57,251
AS PAIN AND WILL TREAT THE WAY

3993
02:29:57,251 --> 02:29:58,819
WE TREATED IT. THERE ARE

3994
02:29:58,819 --> 02:30:00,654
CERTAINLY STREAMLINED TAILORED

3995
02:30:00,654 --> 02:30:01,789
INTERVENTIONS OF PAIN THAT ARE

3996
02:30:01,789 --> 02:30:02,823
SPECIFIC TO THE MECHANISM OF

3997
02:30:02,823 --> 02:30:04,992
PAIN. 

3998
02:30:04,992 --> 02:30:06,527
>> I THINK THAT IS AN
ISSUE A

3999
02:30:06,527 --> 02:30:10,030
LOT OF CHRONIC PHYSICAL

4000
02:30:10,030 --> 02:30:10,731
DISABILITIES. ACKNOWLEDGMENT AND

4001
02:30:10,731 --> 02:30:15,202
SUPPORT AND HOW PAIN CHANGES

4002
02:30:15,202 --> 02:30:16,904
PEOPLE'S FUNCTION. LEADS TO

4003
02:30:16,904 --> 02:30:18,973
SECONDARY ISSUES ISOLATION.

4004
02:30:18,973 --> 02:30:21,008
OKAY.  STILL MORE DISCUSSION. I

4005
02:30:21,008 --> 02:30:24,311
HOPE THAT PEOPLE CAN ANSWER THE

4006
02:30:24,311 --> 02:30:27,381
QUESTIONS THAT ARE STILL WE

4007
02:30:27,381 --> 02:30:29,183
DIDN'T GET TO. ANSWER THEM

4008
02:30:29,183 --> 02:30:30,651
DIRECTLY.  WE HAVE COME TO THE

4009
02:30:30,651 --> 02:30:32,286
BREAK. SO TAKE A BREAK FOR 20

4010
02:30:32,286 --> 02:30:37,224
MINUTES COME BACK AT 1:50. 

4011
02:30:37,224 --> 02:30:38,826
EASTERN STANDARD TIME TO GET TO

4012
02:30:38,826 --> 02:30:42,363
OUR FINAL SESSION ON WORK FORCE

4013
02:30:42,363 --> 02:30:45,733
AND RESEARCH DEVELOPMENT. WITH

4014
02:30:45,733 --> 02:30:46,834
THAT, THANK YOU, IT WAS A GREAT

4015
02:30:46,834 --> 02:30:49,136
MORNING SESSION. LOOK FORWARD TO

4016
02:30:49,136 --> 02:30:54,384
THE FINAL PART OF OUR DISCUSSION

4017
02:30:54,384 --> 02:30:55,519
WE ARE READY FOR THE
FINAL

4018
02:30:55,519 --> 02:31:03,026
SESSION.  THE ANCHOR LEG OF IF

4019
02:31:03,026 --> 02:31:04,661
YOU WILL. IT'S A FANTASTIC

4020
02:31:04,661 --> 02:31:06,596
CONFERENCE UP TO THIS POINT AND

4021
02:31:06,596 --> 02:31:08,632
WE WILL FINISH WITH STREAM PLAN

4022
02:31:08,632 --> 02:31:10,434
PRIORITY AREA 3 WHICH IS WORK

4023
02:31:10,434 --> 02:31:11,501
FORCE AND RESOURCE DEVELOPMENT.

4024
02:31:11,501 --> 02:31:16,740
THIS IS AN AREAS OF PARTICULAR

4025
02:31:16,740 --> 02:31:19,309
INTEREST TO NIH NINDS AND NICHD

4026
02:31:19,309 --> 02:31:22,379
AS WELL. OUR FIRST TALK IS GOING

4027
02:31:22,379 --> 02:31:24,314
TO BE BY DR. SHARON RHAMEY WHO

4028
02:31:24,314 --> 02:31:25,982
WILL TALK TO US ABOUT CLINICAL

4029
02:31:25,982 --> 02:31:29,019
TRIALS CEREBRAL PALSY AND

4030
02:31:29,019 --> 02:31:29,820
TRAINING CEREBRAL PALSY

4031
02:31:29,820 --> 02:31:31,922
RESEARCHERS. OUR NEXT IS GOING

4032
02:31:31,922 --> 02:31:33,290
TO BE DR. KAT STEELE FROM

4033
02:31:33,290 --> 02:31:34,725
UNIVERSITY OF WASHINGTON WHO IS

4034
02:31:34,725 --> 02:31:38,061
GOING TO BE TALKING ABOUT

4035
02:31:38,061 --> 02:31:39,196
MOBILIZING FOR CEREBRAL PALSY

4036
02:31:39,196 --> 02:31:40,430
THE SCIENCE TEAM AND TECH TO

4037
02:31:40,430 --> 02:31:45,869
MOVE FORWARD. THAT IS FOLLOWED

4038
02:31:45,869 --> 02:31:49,673
BY DOCTORED THERESA MOULTON,

4039
02:31:49,673 --> 02:31:51,875
NORTHWESTERN COMMON DATA

4040
02:31:51,875 --> 02:31:53,577
ELEMENTS AND PAUL GROSS,

4041
02:31:53,577 --> 02:31:55,011
CEREBRAL PALSY RESEARCH POLICY

4042
02:31:55,011 --> 02:31:57,280
NETWORK WHO WILL TALK REGISTRIES

4043
02:31:57,280 --> 02:31:58,515
IN CEREBRAL PALSY RESEARCH

4044
02:31:58,515 --> 02:32:00,017
PRESENTING BOTH INVESTIGATOR

4045
02:32:00,017 --> 02:32:01,685
PERSPECTIVE AS WELL AS THE

4046
02:32:01,685 --> 02:32:06,089
PATIENT ADVOCACY FAMILY AND

4047
02:32:06,089 --> 02:32:06,990
RESEARCH PARTICIPANT

4048
02:32:06,990 --> 02:32:09,659
PERSPECTIVES. SO WITH THAT, WHY

4049
02:32:09,659 --> 02:32:10,927
DON'T WE START THE VIDEOS

4050
02:32:10,927 --> 02:32:15,265
PLEASE. 

4051
02:32:15,265 --> 02:32:19,002
>> IT IS AN HONOR TO BE
HERE

4052
02:32:19,002 --> 02:32:22,506
TODAY. I WANT TO TALK ABOUT

4053
02:32:22,506 --> 02:32:23,407
FACILITATING CLINICAL TRIALS

4054
02:32:23,407 --> 02:32:25,142
RESEARCH AND TRAINING FUTURE

4055
02:32:25,142 --> 02:32:28,845
INVESTIGATORS.  I WOULD LIKE TO

4056
02:32:28,845 --> 02:32:30,046
BEGIN ACKNOWLEDGING WHAT I

4057
02:32:30,046 --> 02:32:35,118
CONSIDER THE CRITICAL ROLE ON

4058
02:32:35,118 --> 02:32:36,486
NIH CENTERS AND

4059
02:32:36,486 --> 02:32:37,220
MULTI-DISCIPLINARY TRAINING

4060
02:32:37,220 --> 02:32:40,424
PROGRAMS. THE CENTERS HAVE HAD A

4061
02:32:40,424 --> 02:32:41,491
PHENOMENAL TRACK RECORD, THEY

4062
02:32:41,491 --> 02:32:44,361
SUPPORT PILOT STUDIES, NEW

4063
02:32:44,361 --> 02:32:46,496
INSTRUMENT DEVELOPMENT,

4064
02:32:46,496 --> 02:32:49,065
TECHNOLOGY AND IT ADVANCES, THEY

4065
02:32:49,065 --> 02:32:52,302
ASSIST IN DATA ANALYSIS, AND

4066
02:32:52,302 --> 02:32:57,040
ABOVE ALL THEY BRING TOGETHER

4067
02:32:57,040 --> 02:33:01,044
CREATIVE COLLABORATIVE

4068
02:33:01,044 --> 02:33:03,280
INDIVIDUALS, CLINICIANS AND

4069
02:33:03,280 --> 02:33:07,751
SCIENTISTS WHO CREATE OUR TEAM

4070
02:33:07,751 --> 02:33:10,620
SCIENCE. THE TRAINING PROGRAMS

4071
02:33:10,620 --> 02:33:13,924
AND INDIVIDUAL RESEARCH CAREER

4072
02:33:13,924 --> 02:33:16,059
AWARDS ALSO HELP ADVANCE OUR

4073
02:33:16,059 --> 02:33:20,464
FIELD.  RECIPIENTS OF THESE

4074
02:33:20,464 --> 02:33:22,532
AWARDS BENEFIT FROM NIH SUPPORT

4075
02:33:22,532 --> 02:33:25,569
AND CONNECTIONS TO OTHERS AND

4076
02:33:25,569 --> 02:33:29,372
REALIZE THE HONOR OF THOSE

4077
02:33:29,372 --> 02:33:31,775
SUPPORTS AND I THINK IT

4078
02:33:31,775 --> 02:33:33,543
ENCOURAGES EXPIRATION INNOVATION

4079
02:33:33,543 --> 02:33:38,081
AND PRODUCTIVITY. AS EPI PAIR

4080
02:33:38,081 --> 02:33:45,055
FOR THIS I REALIZE SINCE 1972, A

4081
02:33:45,055 --> 02:33:48,391
50 YEAR WINDOW I HAVE

4082
02:33:48,391 --> 02:33:51,728
CONTINUOUSLY SUPPORTED BY NIH

4083
02:33:51,728 --> 02:33:53,763
AND MANY OF THOSE YEARS I HAVE

4084
02:33:53,763 --> 02:33:55,899
BEEN IN A MULTI-DISCIPLINARY

4085
02:33:55,899 --> 02:33:59,236
CENTER AND I RECEIVED A CAREER

4086
02:33:59,236 --> 02:34:01,204
AWARD. WHAT HAVE I LEARNED FROM

4087
02:34:01,204 --> 02:34:04,975
THE RESEARCH THAT I AND MANY

4088
02:34:04,975 --> 02:34:08,545
OTHERS HAVE DONE? IN TWO THEMES

4089
02:34:08,545 --> 02:34:09,679
EMERGED AS I WAS THINKING ABOUT

4090
02:34:09,679 --> 02:34:12,115
THIS AND PREPARING FOR THE TALK,

4091
02:34:12,115 --> 02:34:19,055
AND THE FIRST IS WE HAVE VASTLY

4092
02:34:19,055 --> 02:34:22,659
UNDERESTIMATED HUMAN POTENTIAL

4093
02:34:22,659 --> 02:34:24,995
TO CHANG CHANGE. THERE ARE TOO Y

4094
02:34:24,995 --> 02:34:26,463
CHILDREN WE THOUGHT COULDN'T

4095
02:34:26,463 --> 02:34:31,935
BENEFIT OR COULDN'T BENEFIT MUCH

4096
02:34:31,935 --> 02:34:34,170
FROM TREATMENT. WE HAVE BEEN

4097
02:34:34,170 --> 02:34:38,408
WRONG. SECONDLY WE NAIVELY,

4098
02:34:38,408 --> 02:34:40,844
NAIVELY HAVE OVERESTIMATED HOW

4099
02:34:40,844 --> 02:34:45,081
RECEPTIVE AND WILLING THE

4100
02:34:45,081 --> 02:34:46,249
TRADITIONAL HEALTHCARE SYSTEMS

4101
02:34:46,249 --> 02:34:49,019
WOULD BE TO TAKE OUR RESEARCH

4102
02:34:49,019 --> 02:34:51,388
FINDINGS AND IMMEDIATELY AND

4103
02:34:51,388 --> 02:34:53,423
EFFECTIVELY PUT THEM IN TO

4104
02:34:53,423 --> 02:34:57,060
ACTION. SO WHAT I WOULD LIKE TO

4105
02:34:57,060 --> 02:35:00,664
DO TODAY IS SHARE A SCIENTIFIC

4106
02:35:00,664 --> 02:35:04,434
CASE HISTORY OF A TEAM THAT

4107
02:35:04,434 --> 02:35:09,873
STARTED OFF AS A VERY SMALL TEAM

4108
02:35:09,873 --> 02:35:11,441
HAS GROWN OUT TO BE A BIG TEAM

4109
02:35:11,441 --> 02:35:13,310
ENGAGED IN PEDIATRIC CONSTRAINT

4110
02:35:13,310 --> 02:35:15,979
INDUCED MOVEMENT THERAPY.  IT

4111
02:35:15,979 --> 02:35:19,916
BEGINS MORE THAN 20 YEARS AGO

4112
02:35:19,916 --> 02:35:22,886
WHEN SOMEONE DR. STEPHANIE NOW

4113
02:35:22,886 --> 02:35:25,488
DECIDED TO GO TO GRADUATE SCHOOL

4114
02:35:25,488 --> 02:35:27,157
AFTER 11 YEARS OF WORKING WITH

4115
02:35:27,157 --> 02:35:29,726
CHRONIC ADULT STROKE PATIENTS IN

4116
02:35:29,726 --> 02:35:34,264
ONE OF THE EARLIEST EXPLORATIONS

4117
02:35:34,264 --> 02:35:36,466
OF CONSTRAINT INDUCED MOVEMENT

4118
02:35:36,466 --> 02:35:43,740
FOR ADULTS.  SHE WANTED TO ADAPT

4119
02:35:43,740 --> 02:35:45,241
PROCEDURES FOR CHILDREN AND SHE

4120
02:35:45,241 --> 02:35:48,445
AND I AND ANOTHER Ph.D.

4121
02:35:48,445 --> 02:35:49,579
STUDENT BEGAN TO WORK TOGETHER

4122
02:35:49,579 --> 02:35:52,282
AND FOR STEPHANIE'S MASTERS

4123
02:35:52,282 --> 02:35:57,387
THESIS OUR FIRST CASE HISTORY

4124
02:35:57,387 --> 02:35:59,889
THEY TREATED AN INFANT THEN GAVE

4125
02:35:59,889 --> 02:36:03,727
HER A SECOND TREATMENT, THIS GOT

4126
02:36:03,727 --> 02:36:06,463
PUBLISHED AND THIS CHILD, LIBBE

4127
02:36:06,463 --> 02:36:08,298
WE USED HER NAME WITH HER

4128
02:36:08,298 --> 02:36:12,068
PERMISSION AND HER FAMILY, WAS

4129
02:36:12,068 --> 02:36:15,605
TRANSFORMED IN P A MATTER OF 15

4130
02:36:15,605 --> 02:36:18,575
DAYS, SIX HOURS OF TREATMENT A

4131
02:36:18,575 --> 02:36:21,411
DAY FROM SCARCELY USING ONE SIDE

4132
02:36:21,411 --> 02:36:26,950
OF HER BODY, THE SIDE THAT WAS

4133
02:36:26,950 --> 02:36:30,253
HELPPURITIC TO USING IT TO REACH

4134
02:36:30,253 --> 02:36:33,757
GRASS RELEASE, SHE BEGAN WEIGHT

4135
02:36:33,757 --> 02:36:36,459
BARING, SHE BEGAN TO COME MORE

4136
02:36:36,459 --> 02:36:37,827
SOCIAL, SHE WAS AT FIRST A

4137
02:36:37,827 --> 02:36:43,433
CHALLENGING CHILD TO WORK WITH. 

4138
02:36:43,433 --> 02:36:45,302
BY SECOND TREATMENT SHE WAS ABLE

4139
02:36:45,302 --> 02:36:47,637
TOWSACK WITH WALKER TO TRY TO

4140
02:36:47,637 --> 02:36:52,809
MOVE UPSTAIRS SHE WAS TALKING,

4141
02:36:52,809 --> 02:36:55,245
BECAME MUCH MORE ENGAGED IN SO

4142
02:36:55,245 --> 02:36:58,248
WE SAW A RAPID BIG CHANGES AND

4143
02:36:58,248 --> 02:37:02,218
WE SAW WHAT WE LABELED BACK THEN

4144
02:37:02,218 --> 02:37:04,020
SPILL OVER EFFECTS AND WE MOW

4145
02:37:04,020 --> 02:37:07,290
CALL THEM MULTI-DOMAIN. YOU

4146
02:37:07,290 --> 02:37:10,660
OFTEN SEEK TO CHANGE ONE THING

4147
02:37:10,660 --> 02:37:12,762
AND YOU CHANGE MORE THAN THAT

4148
02:37:12,762 --> 02:37:14,497
ONE THING YOU ARE FOCUSED ON. 

4149
02:37:14,497 --> 02:37:17,167
WE HEN DID THE FIRST RANDOMIZE

4150
02:37:17,167 --> 02:37:18,935
CONTROL TRIAL OF PEDIATRIC

4151
02:37:18,935 --> 02:37:20,503
CONSTRAINT INDUCED MOVEMENT

4152
02:37:20,503 --> 02:37:22,138
THERAPY WITH 18 CHILDREN. AND

4153
02:37:22,138 --> 02:37:25,775
AFTER WE FOUND OUT THAT NINE

4154
02:37:25,775 --> 02:37:27,577
CHILDREN RESPONDED VERY WELL WE

4155
02:37:27,577 --> 02:37:28,712
TOOK THE CONTROL GROUP AND

4156
02:37:28,712 --> 02:37:30,847
CROSSED THEM OVER TO RECEIVE

4157
02:37:30,847 --> 02:37:34,150
TREATMENT AND HAD A BUILT IN

4158
02:37:34,150 --> 02:37:36,986
REPLICATION AND FOUND THE SAME

4159
02:37:36,986 --> 02:37:41,091
AFFECT WITH THE CROSS OVER.  WE

4160
02:37:41,091 --> 02:37:44,060
THEN WENT TO MULTI-SITE TRIALS

4161
02:37:44,060 --> 02:37:50,900
INITIALLY FUNDED WITH FOUNDATION

4162
02:37:50,900 --> 02:37:52,969
PARENT FOUNDATION MONEY AND

4163
02:37:52,969 --> 02:37:54,504
FOUND WE COULD TEACH PEOPLE

4164
02:37:54,504 --> 02:37:57,307
ELSEWHERE TO REPLICATE THE

4165
02:37:57,307 --> 02:37:59,843
TREATMENT, WE MANUALIZED IT WE

4166
02:37:59,843 --> 02:38:01,311
WROTE A BOOK OF THE TREATMENT

4167
02:38:01,311 --> 02:38:04,714
PROTOCOL TO TRAIN OTHER PEOPLE,

4168
02:38:04,714 --> 02:38:07,083
WE DEMONSTRATED TO OBTAIN THE

4169
02:38:07,083 --> 02:38:09,953
SAME AFFECTS AGAIN AND AGAIN

4170
02:38:09,953 --> 02:38:11,821
WHAT WE KNEW AT THAT TIME

4171
02:38:11,821 --> 02:38:13,656
BECAUSE PEOPLE THROUGHOUT THE

4172
02:38:13,656 --> 02:38:16,960
WORLD WERE TESTING THEIR OWN

4173
02:38:16,960 --> 02:38:18,228
VARIATIONS OF CONSTRAINT INDUCED

4174
02:38:18,228 --> 02:38:19,996
MOVEMENT THERAPY IS WE HAVE TO

4175
02:38:19,996 --> 02:38:23,133
FIGURE OUT WHAT ARE THE MOST

4176
02:38:23,133 --> 02:38:26,069
IMPORTANT COMPONENTS OF THE

4177
02:38:26,069 --> 02:38:29,172
TREATMENT PROTOCOL COMPARE TO

4178
02:38:29,172 --> 02:38:31,274
EFFICACY TRIALS DO THESE LIKE

4179
02:38:31,274 --> 02:38:33,143
TESTS IS ONE DOSAGE

4180
02:38:33,143 --> 02:38:33,676
SIGNIFICANTLY BETTER THAN

4181
02:38:33,676 --> 02:38:36,880
ANOTHER DOSAGE. WE DEVELOPED

4182
02:38:36,880 --> 02:38:39,215
USING A CAST FOR THE CHILD'S

4183
02:38:39,215 --> 02:38:41,851
MORE FUNCTIONAL UPPER EXTREMITY,

4184
02:38:41,851 --> 02:38:46,256
SOME PEOPLE ONLY USED AMIT TEN

4185
02:38:46,256 --> 02:38:47,757
OR A SPLINT WHICH IS BETTER. ARE

4186
02:38:47,757 --> 02:38:50,593
THEY ALL GOOD? WHAT WE LEARNED

4187
02:38:50,593 --> 02:38:53,763
FROM THOSE IS THAT THE HIGHER

4188
02:38:53,763 --> 02:38:55,999
DOSAGE REALLY MATTERS A MINIMUM

4189
02:38:55,999 --> 02:38:59,702
OF THREE HOURS A DAY FOR FIVE

4190
02:38:59,702 --> 02:39:02,739
DAYS A WEEK FOR FOUR WEEKS

4191
02:39:02,739 --> 02:39:04,207
COMPARED TO EVEN THREE TWO AND A

4192
02:39:04,207 --> 02:39:05,441
HALF HOUR SESSIONS OVER THAT

4193
02:39:05,441 --> 02:39:08,778
SAME DURATION. WE FOUND THAT

4194
02:39:08,778 --> 02:39:11,748
DIFFERENT FORMS OF CONSTRAINING

4195
02:39:11,748 --> 02:39:15,518
THE NON-HELPPERETIC ARM COULD

4196
02:39:15,518 --> 02:39:17,787
RESULT IN VERY GOOD GAINS FOR

4197
02:39:17,787 --> 02:39:21,591
THE CHILDREN. BUT WE DID DO SOME

4198
02:39:21,591 --> 02:39:25,562
LONG TERM FOLLOW-UP AND WE FOUND

4199
02:39:25,562 --> 02:39:29,065
OUT THAT SOME OF THE FULL

4200
02:39:29,065 --> 02:39:32,202
ADVANTAGES OR SEQUELAE DON'T

4201
02:39:32,202 --> 02:39:37,140
APPEAR UNTIL ABOUT 12 MONTHS

4202
02:39:37,140 --> 02:39:39,843
AFTER TREATMENT WE ALSO HAT THE

4203
02:39:39,843 --> 02:39:42,345
OPPORTUNITY TO LOOK AT RESEARCH

4204
02:39:42,345 --> 02:39:44,481
CLINICS THAT SET UP WITH A

4205
02:39:44,481 --> 02:39:48,117
PROTOCOL THAT FAMILIES AGREE TO

4206
02:39:48,117 --> 02:39:51,988
WE HAVE DATA FROM MANY CHILDREN

4207
02:39:51,988 --> 02:39:53,323
MORE HETEROGENOUS REAL WORLD

4208
02:39:53,323 --> 02:39:56,893
SAMPLE, TO SHOW THAT WE COULD

4209
02:39:56,893 --> 02:39:58,895
REPLICATE MAGNITUDE AND DURATION

4210
02:39:58,895 --> 02:40:02,599
OF AFFECTS IN A CLINIC SETTING

4211
02:40:02,599 --> 02:40:04,167
AS WELL AS UNDER IDEAL

4212
02:40:04,167 --> 02:40:07,370
CONTROLLED OR RESEARCH TRIAL

4213
02:40:07,370 --> 02:40:13,309
CONDITIONS. FINALLY WE NOW

4214
02:40:13,309 --> 02:40:15,712
LEADING HONORED CHALLENGED EVERY

4215
02:40:15,712 --> 02:40:18,648
DAY TO LEAD THE FIRST PHASE 3

4216
02:40:18,648 --> 02:40:20,650
MULTI-SITE TRIAL OF OUR FORM OF

4217
02:40:20,650 --> 02:40:22,785
CONSTRAINT INDUCED MOVEMENT

4218
02:40:22,785 --> 02:40:27,357
THERAPY FOR INFANTS WHO HAD

4219
02:40:27,357 --> 02:40:28,758
PERINATAL ARTERIAL ISCHEMIC

4220
02:40:28,758 --> 02:40:30,927
STROKE, CALLED I ACQUIRE AND YOU

4221
02:40:30,927 --> 02:40:32,495
CAN FIND US ON

4222
02:40:32,495 --> 02:40:33,162
CLINICALTRIALS.GOV AND WE HAVE

4223
02:40:33,162 --> 02:40:37,400
ADDED INTO THAT BOTH

4224
02:40:37,400 --> 02:40:38,234
LONGITUDINAL COMPONENTS WE HAVE

4225
02:40:38,234 --> 02:40:41,938
ADDED BIOMARKERS AND WE HAVE

4226
02:40:41,938 --> 02:40:44,007
APPARENT COUNCIL AS PARTNERS

4227
02:40:44,007 --> 02:40:46,409
HAVE THE VERY BEGINNING OF

4228
02:40:46,409 --> 02:40:47,610
DESIGNING THE STEADY TO WORKING

4229
02:40:47,610 --> 02:40:51,347
WITH US ON A MONTHLY BASIS TO BE

4230
02:40:51,347 --> 02:40:54,817
SURE WE CAN RECRUIT AND RETAIN

4231
02:40:54,817 --> 02:40:57,921
AND BE AWARE OF AND SENSITIVE TO

4232
02:40:57,921 --> 02:40:59,088
THE NEEDS OF THE CHILDREN AND

4233
02:40:59,088 --> 02:41:03,326
THEIR FAMILIES.  FOR THE FUTURE

4234
02:41:03,326 --> 02:41:06,696
WE WANT TO CONTINUE AND

4235
02:41:06,696 --> 02:41:07,997
ENCOURAGE EVERYONE TO ENGAGE

4236
02:41:07,997 --> 02:41:10,033
PATIENTS AND FAMILIES AND

4237
02:41:10,033 --> 02:41:13,603
CLINICIANS IN YOUR RESEARCH. WE

4238
02:41:13,603 --> 02:41:16,139
HOPE THAT WE RECRUIT A MORE

4239
02:41:16,139 --> 02:41:17,974
MIXED SAMPLE THAT REFLECTS THE

4240
02:41:17,974 --> 02:41:20,310
TRUE VARIATION, WE FIND IN

4241
02:41:20,310 --> 02:41:22,812
CLINIC POPULATIONS, WE WOULD

4242
02:41:22,812 --> 02:41:25,515
LIKE TO MEASURE MORE THAN JUST

4243
02:41:25,515 --> 02:41:29,752
ONE OR TWO OUTCOMES BUT

4244
02:41:29,752 --> 02:41:31,955
ACKNOWLEDGE THAT THERE ARE MORE

4245
02:41:31,955 --> 02:41:34,023
AREAS OF THE CHILD'S LIFE THAT

4246
02:41:34,023 --> 02:41:36,326
COULD BE AFFECTED AND TO INCLUDE

4247
02:41:36,326 --> 02:41:41,097
THOSE MEASURES FROM ARE THE VERY

4248
02:41:41,097 --> 02:41:43,800
BEGINNING. WE ENCOURAGE PEOPLE

4249
02:41:43,800 --> 02:41:46,803
TO EXPLORE AND TRY BIOMARKERS

4250
02:41:46,803 --> 02:41:50,340
SUCH AS GENETIC INDICATORS OF

4251
02:41:50,340 --> 02:41:53,009
DOPAMINE OR NEUROPLASTICITY

4252
02:41:53,009 --> 02:41:54,844
MEASURES, SOME OF THE MORE

4253
02:41:54,844 --> 02:41:58,081
SUCCESSFUL WAYS OF IMAGING YOUNG

4254
02:41:58,081 --> 02:41:59,482
CHILDREN'S BRAINS BEFORE DURING

4255
02:41:59,482 --> 02:42:04,120
AND AFTER TREATMENT. WE ALSO

4256
02:42:04,120 --> 02:42:06,122
WOULD LIKE TO PLACE TREATMENT IN

4257
02:42:06,122 --> 02:42:07,824
CONTEXT OF CHILD'S ENTIRE LIFE

4258
02:42:07,824 --> 02:42:14,297
COURSE AND INCLUDE LONG TERM

4259
02:42:14,297 --> 02:42:16,733
FOLLOW-UP SOMETHING WE HASN'T

4260
02:42:16,733 --> 02:42:17,633
DONE SUFFICIENTLY AND WE

4261
02:42:17,633 --> 02:42:19,936
RECOMMEND FOR THE FUTURE IS THAT

4262
02:42:19,936 --> 02:42:22,772
WE WORK WITH HEALTHCARE

4263
02:42:22,772 --> 02:42:24,007
PROVIDERS AND SYSTEMS AND

4264
02:42:24,007 --> 02:42:25,975
NATIONAL ORGANIZATIONS, VERY

4265
02:42:25,975 --> 02:42:29,545
EARLY ON IN OUR CLINICAL TRIALS

4266
02:42:29,545 --> 02:42:31,581
SO THAT THEY WILL BE

4267
02:42:31,581 --> 02:42:34,584
KNOWLEDGEABLE ABOUT OUR WORK AND

4268
02:42:34,584 --> 02:42:37,920
BETTER PREPARED TO PUT RESEARCH

4269
02:42:37,920 --> 02:42:41,958
FINDINGS INTO ACTION. IN TERMS

4270
02:42:41,958 --> 02:42:43,826
OF IMPLEMENTATION SCIENCE WE

4271
02:42:43,826 --> 02:42:47,263
NEED TO ACTUALLY CONDUCT

4272
02:42:47,263 --> 02:42:50,400
SYSTEMATIC RESEARCH ON WHAT

4273
02:42:50,400 --> 02:42:52,902
TECHNIQUES WORK BEST SO THE

4274
02:42:52,902 --> 02:42:59,542
FINDINGS GET PUT INTO ACTION

4275
02:42:59,542 --> 02:43:00,877
IMPLEMENTATION SCIENCE NOW HAS

4276
02:43:00,877 --> 02:43:02,678
VERY STRONG AND ACTUALLY VERY

4277
02:43:02,678 --> 02:43:04,781
PRODUCTIVE CONCEPTUAL FRAME

4278
02:43:04,781 --> 02:43:07,050
WORKS TO INFORM STUDY DESIGN

4279
02:43:07,050 --> 02:43:11,754
DATA COLLECTION AND DATA

4280
02:43:11,754 --> 02:43:13,289
ANALYSIS, THE SHAME SCIENTIFIC

4281
02:43:13,289 --> 02:43:15,691
STANDARDS FOR RIGOR, IF YOU DO A

4282
02:43:15,691 --> 02:43:18,561
TRIAL OF TWO DIFFERENT

4283
02:43:18,561 --> 02:43:20,496
TECHNIQUES TO PROMOTE THE

4284
02:43:20,496 --> 02:43:24,934
IMPLEMENTATION YOU COMPARE THEIR

4285
02:43:24,934 --> 02:43:26,636
EFFICACY. WE NEED MULTIPLE

4286
02:43:26,636 --> 02:43:29,772
DISCIPLINES INCLUDING

4287
02:43:29,772 --> 02:43:31,808
ECONOMISTS, HEALTHCARE

4288
02:43:31,808 --> 02:43:34,877
ADMINISTRATORS, AND ADVOCACY

4289
02:43:34,877 --> 02:43:37,180
ORGANIZATIONS TON PARTNERS IN

4290
02:43:37,180 --> 02:43:39,682
OUR IMPLEMENTATION SCIENCE

4291
02:43:39,682 --> 02:43:42,218
RESEARCH. I WANT TO BE SURE WE

4292
02:43:42,218 --> 02:43:45,988
KNOW THIS IS NOT A SYNONYM OR

4293
02:43:45,988 --> 02:43:48,391
THE SAME AS CONTINUOUS QUALITY

4294
02:43:48,391 --> 02:43:53,096
IMPROVEMENT. THIS IS SCIENCE TO

4295
02:43:53,096 --> 02:43:56,999
DISCOVER WHICH STRATEGIES ARE

4296
02:43:56,999 --> 02:44:01,671
THE BEST TO HAVE EFFECTIVE

4297
02:44:01,671 --> 02:44:04,807
IMPLEMENTATION OF NEW TREATMENT

4298
02:44:04,807 --> 02:44:07,777
STRATEGIES. FINALLY WE WANT TO

4299
02:44:07,777 --> 02:44:10,313
LET Y'ALL KNOW ABOUT THE CENTER

4300
02:44:10,313 --> 02:44:14,383
THAT SIX OF US LEAD I'M DIRECTOR

4301
02:44:14,383 --> 02:44:19,355
BUT STEPHANIE DELUCA, LAUREN

4302
02:44:19,355 --> 02:44:23,459
LOW, AMY ARE MY FULL CO-LEADERS

4303
02:44:23,459 --> 02:44:26,162
IN THIS INITIATIVE. IT IS FUNDED

4304
02:44:26,162 --> 02:44:29,832
BY NICHD AS ONE OF SIX

4305
02:44:29,832 --> 02:44:31,601
INFRASTRUCTURE RESOURCE

4306
02:44:31,601 --> 02:44:32,935
REHABILITATION CENTERS, WE WANT

4307
02:44:32,935 --> 02:44:34,937
TO LEARN FROM YOU, WE WANT TO

4308
02:44:34,937 --> 02:44:36,139
HELP YOU AND DO EVERYTHING WE

4309
02:44:36,139 --> 02:44:40,009
CAN TO PROMOTE HIGH IMPACT

4310
02:44:40,009 --> 02:44:42,712
CLINICAL TRIALS RESEARCH AND TO

4311
02:44:42,712 --> 02:44:47,216
RECRUIT A MORE HETEROGENOUS

4312
02:44:47,216 --> 02:44:47,917
GROUP OF PEDIATRIC

4313
02:44:47,917 --> 02:44:49,185
REHABILITATION INVESTIGATORS AND

4314
02:44:49,185 --> 02:44:51,954
HERE IS OUR WEBSITE, PLEASE COME

4315
02:44:51,954 --> 02:44:57,093
TO US WE WELCOME YOU JOINING US 

4316
02:44:57,093 --> 02:44:58,628
FINALLY MY DREAM IS SOON I WILL

4317
02:44:58,628 --> 02:45:02,131
NOT HAVE TO SAY WE UNDERESTIMATE

4318
02:45:02,131 --> 02:45:04,200
HUMAN POTENTIAL AND OVERESTIMATE

4319
02:45:04,200 --> 02:45:06,435
THE RECEPTIVITY OF THE

4320
02:45:06,435 --> 02:45:09,138
HEALTHCARE SYSTEM TO CHANGE. I

4321
02:45:09,138 --> 02:45:12,308
WOULD LOVE IT AT THE END OF OUR

4322
02:45:12,308 --> 02:45:14,577
TEN YEAR STRATEGIC PLAN FOR CP

4323
02:45:14,577 --> 02:45:17,914
RESEARCH WE CAN SEE THAT MOST

4324
02:45:17,914 --> 02:45:21,450
PEOPLE RECOGNIZE REMARKABLE

4325
02:45:21,450 --> 02:45:24,620
ABILITY OF CHILDREN TO CHANGE

4326
02:45:24,620 --> 02:45:27,456
AND THE HEALTHCARE SYSTEMS TO BE

4327
02:45:27,456 --> 02:45:29,192
WELL PREPARED TO IMPLEMENT

4328
02:45:29,192 --> 02:45:30,827
RESEARCH FINDINGS INTO CLINICAL

4329
02:45:30,827 --> 02:45:33,162
PRACTICE.  THANK YOU AND IT'S

4330
02:45:33,162 --> 02:45:37,967
BEEN AN HONOR TO JOIN YOU TODAY 

4331
02:45:37,967 --> 02:45:40,903
>> HI EARN I'M KAT STEELE

4332
02:45:40,903 --> 02:45:41,938
UNIVERSITY OF WASHINGTON AND I'M

4333
02:45:41,938 --> 02:45:43,739
EXCITED TO BE JOINING THIS

4334
02:45:43,739 --> 02:45:47,276
CONFERENCE. THIS WEEK FOR NIH.

4335
02:45:47,276 --> 02:45:48,077
I'M JOINING TODAY FROM

4336
02:45:48,077 --> 02:45:50,279
UNIVERSITY OF WASHINGTON SEATTLE

4337
02:45:50,279 --> 02:45:52,848
WASHINGTON WHERE WE HAVE A GREAT

4338
02:45:52,848 --> 02:45:53,516
MULTI-DISCIPLINARY TEAM

4339
02:45:53,516 --> 02:45:54,383
INVESTIGATING DIFFERENT TOOLS

4340
02:45:54,383 --> 02:45:58,387
AND TECHNOLOGIES TO SUPPORT

4341
02:45:58,387 --> 02:45:59,055
INDIVIDUALS WITH CEREBRAL PALSY.

4342
02:45:59,055 --> 02:46:00,923
THE TITLE OF THE TALK MOBILIZING

4343
02:46:00,923 --> 02:46:01,791
CEREBRAL PALSY BECAUSE

4344
02:46:01,791 --> 02:46:03,659
ORGANIZERS ASKED ME TO TALK A

4345
02:46:03,659 --> 02:46:06,829
LITTLE BIT ABOUT MY OWN CAREER

4346
02:46:06,829 --> 02:46:09,098
PATH AND OUR TEAMS APPROACH TO

4347
02:46:09,098 --> 02:46:10,166
MULTI-DISCIPLINARY SCIENCE FOR

4348
02:46:10,166 --> 02:46:11,434
ADVANCING OUR UNDERSTANDING OF

4349
02:46:11,434 --> 02:46:13,703
CEREBRAL PALSY.  SO I WILL GIVE

4350
02:46:13,703 --> 02:46:15,738
YOU A LITTLE BIT OF AN EXAMPLE

4351
02:46:15,738 --> 02:46:17,373
FROM OUR OWN PROJECT AND GIVE

4352
02:46:17,373 --> 02:46:18,941
YOU GUY AS FEW TOOLS AND

4353
02:46:18,941 --> 02:46:20,343
PRODUCTS OR SIZES FOR YOUR OWN

4354
02:46:20,343 --> 02:46:22,044
RESEARCH.

4355
02:46:22,044 --> 02:46:24,480
FIRST A LITTLE BACKGROUND ABOUT

4356
02:46:24,480 --> 02:46:26,616
MYSELF. I AM A MECHANICAL

4357
02:46:26,616 --> 02:46:28,251
ENGINEER AND I WAS AN ENGINEER

4358
02:46:28,251 --> 02:46:31,187
TRAINED IN THE CLINIC WHILE MY

4359
02:46:31,187 --> 02:46:34,957
DEGREES ARE MECHANICAL

4360
02:46:34,957 --> 02:46:36,158
ENGINEERING I HAVE BEEN LUCKY

4361
02:46:36,158 --> 02:46:37,226
ENOUGH TO WORK WITH A FANTASTIC

4362
02:46:37,226 --> 02:46:39,262
COMMUNITY OF DOCTORS AND

4363
02:46:39,262 --> 02:46:40,896
THERAPISTS THROUGHOUT MY CAREER

4364
02:46:40,896 --> 02:46:41,831
AS WELL AS CEREBRAL PALSY

4365
02:46:41,831 --> 02:46:45,134
COMMUNITY.  AMAZING FAMILIES. I

4366
02:46:45,134 --> 02:46:46,969
STARTED BY WORKING AT

4367
02:46:46,969 --> 02:46:47,770
(INAUDIBLE) CHILDREN'S HOSPITAL

4368
02:46:47,770 --> 02:46:49,138
BEFORE I WENT TO GRADUATE SCHOOL

4369
02:46:49,138 --> 02:46:51,274
WHICH REALLY MOTIVATED ME AS AN

4370
02:46:51,274 --> 02:46:55,278
ENGINEER TO GO DEEPER INTO OUR

4371
02:46:55,278 --> 02:46:56,045
UNDERSTANDING WALKING AND HUMAN

4372
02:46:56,045 --> 02:46:57,813
MOVEMENT AND ESPECIALLY OUR

4373
02:46:57,813 --> 02:46:58,614
UNDERSTANDING OF MOBILITY AND

4374
02:46:58,614 --> 02:47:00,416
CEREBRAL PALSY. DURING THE MY

4375
02:47:00,416 --> 02:47:02,685
TIME AT STANFORD I WAS ALSO

4376
02:47:02,685 --> 02:47:04,987
LUCKY ENOUGH TO CONTINUE TO WORK

4377
02:47:04,987 --> 02:47:07,523
AT UC PACKARD CHILDREN'S

4378
02:47:07,523 --> 02:47:09,525
HOSPITAL PART TIME RUNNING THEIR

4379
02:47:09,525 --> 02:47:11,761
ANALYSIS AND WHERE I STARTED MY

4380
02:47:11,761 --> 02:47:12,728
COLLABORATION WITH CHILDREN'S

4381
02:47:12,728 --> 02:47:14,463
SPECIALTY HEALTHCARE, ONE OF THE

4382
02:47:14,463 --> 02:47:16,198
OTHER EXCELLENT HOSPITALS WE

4383
02:47:16,198 --> 02:47:18,567
WORK WITH. AFTER GRADUATING FROM

4384
02:47:18,567 --> 02:47:21,904
STANFORD I WENT TO THE REHAB

4385
02:47:21,904 --> 02:47:24,040
INSTITUTE OF CHICAGO H AND NOW

4386
02:47:24,040 --> 02:47:25,775
AT UNIVERSITY OF WASHINGTON

4387
02:47:25,775 --> 02:47:27,143
WHERE I HAVE BEEN THE LAST --

4388
02:47:27,143 --> 02:47:28,077
YEARS AND CONTINUE TO

4389
02:47:28,077 --> 02:47:30,379
COLLABORATE AGAIN WITH MANY OF

4390
02:47:30,379 --> 02:47:32,515
YOU IN THIS EXCELLENT COMMUNITY

4391
02:47:32,515 --> 02:47:34,950
OF CHILDREN'S HOSPITALS AND

4392
02:47:34,950 --> 02:47:37,286
LOCAL COMMUNITIES.  SO I MENTION

4393
02:47:37,286 --> 02:47:39,121
THAT BECAUSE AGAIN, I AM

4394
02:47:39,121 --> 02:47:40,723
ENGINEER BY TRAINING AND AS SUCH

4395
02:47:40,723 --> 02:47:42,391
I OFTEN WILL GET EXCITED ABOUT

4396
02:47:42,391 --> 02:47:47,530
ALL THE NEW TOOLS AND

4397
02:47:47,530 --> 02:47:52,868
TECHNOLOGY, I'M A HAMMER LOOKING

4398
02:47:52,868 --> 02:47:55,137
FOR NAIL:  THERE'S COOL TOOLS

4399
02:47:55,137 --> 02:47:56,806
AND TECHNOLOGIES COMING OUT THAT

4400
02:47:56,806 --> 02:47:59,241
I FEEL LIKE A KID IN A CANDY

4401
02:47:59,241 --> 02:48:01,177
SHOP. WHILE THEY OFFER PROMESS

4402
02:48:01,177 --> 02:48:03,913
AND OPTIONS FOR INDIVIDUALS WITH

4403
02:48:03,913 --> 02:48:06,082
CEREBRAL PALSY, WHAT IT COMES

4404
02:48:06,082 --> 02:48:08,317
DOWN TO RESEARCH AND ADVANCING

4405
02:48:08,317 --> 02:48:10,086
UNDERSTANDING AND OPTIONS FOR

4406
02:48:10,086 --> 02:48:11,120
KIDS WITH CEREBRAL PALSY IN

4407
02:48:11,120 --> 02:48:11,954
ADULTS WITH CEREBRAL PALSY IN

4408
02:48:11,954 --> 02:48:17,760
OUR COMMUNITY, I WANTED TO STEP

4409
02:48:17,760 --> 02:48:19,362
BACK AND THINK DEEPER WHAT THE

4410
02:48:19,362 --> 02:48:20,663
UNDERLYING SCIENCE IS. THIS IS A

4411
02:48:20,663 --> 02:48:21,764
LESSON THAT I HAVE LEARNED FROM

4412
02:48:21,764 --> 02:48:23,766
ONE OF OUR PROGRAM DIRECTORS AT

4413
02:48:23,766 --> 02:48:27,903
NINDS. ESPECIALLY YOUNG

4414
02:48:27,903 --> 02:48:28,838
ASSISTANT PROFESSOR I COME TO

4415
02:48:28,838 --> 02:48:31,640
THEM WITH A BRAND NEW IDEA THAT

4416
02:48:31,640 --> 02:48:33,142
IS SO EXCITED ABOUT TECHNOLOGY

4417
02:48:33,142 --> 02:48:38,681
NEW TOOL THAT I PROMISE, NINDS

4418
02:48:38,681 --> 02:48:42,651
PAUSE AND SAY IT ISOR IT SOUNDS

4419
02:48:42,651 --> 02:48:45,521
INTERESTING BUT WHAT IF WHICH

4420
02:48:45,521 --> 02:48:47,156
ARE WRONG? I STOP AND SAY MAYBE

4421
02:48:47,156 --> 02:48:49,992
THIS TOOL TECHNIQUE DOESN'T WORK

4422
02:48:49,992 --> 02:48:52,661
BUT PERHAPS WORKING ISN'T THAT

4423
02:48:52,661 --> 02:48:54,463
EXCITING ENOUGH? AND HE REALLY

4424
02:48:54,463 --> 02:48:55,631
CHALLENGED ME OVER THE YEARS TO

4425
02:48:55,631 --> 02:48:58,601
THINK CAREFULLY ABOUT DESIGNING

4426
02:48:58,601 --> 02:49:00,002
SCIENCE TO LEARN SOMETHING

4427
02:49:00,002 --> 02:49:01,937
VALUABLE AND IMPACTFUL EVEN WHEN

4428
02:49:01,937 --> 02:49:07,043
YOU ARE WRONG. AND HI PUSHES THE

4429
02:49:07,043 --> 02:49:08,811
PIECE OF LOOK AT INVESTING THE

4430
02:49:08,811 --> 02:49:10,780
TOOLS AN TECHNOLOGY BUT PUT THE

4431
02:49:10,780 --> 02:49:13,449
FOREFRONT THE IMPORTANCE TO

4432
02:49:13,449 --> 02:49:15,851
UNDERSTAND THE SCIENCE AND

4433
02:49:15,851 --> 02:49:16,919
MECHANISMS BEHIND CEREBRAL PALSY

4434
02:49:16,919 --> 02:49:19,688
AND OTHER DEVELOPMENTAL

4435
02:49:19,688 --> 02:49:21,323
DISABILITIES TO ADVANCE NEW

4436
02:49:21,323 --> 02:49:22,825
TECHNOLOGY AND TOOLS AND

4437
02:49:22,825 --> 02:49:24,727
TRANSLATION TO THE CLINIC AND A

4438
02:49:24,727 --> 02:49:26,896
WAY OF LIFE. SO TODAY I HOPE TO

4439
02:49:26,896 --> 02:49:27,596
GIVE YOU ONE EXAMPLE OF THAT AND

4440
02:49:27,596 --> 02:49:29,532
APPLY TO ONE OF THE AREAS THAT

4441
02:49:29,532 --> 02:49:30,666
WE HAVE BEEN RESEARCHING FOR THE

4442
02:49:30,666 --> 02:49:34,170
LAST DECADE.  NEUROMUSCULAR

4443
02:49:34,170 --> 02:49:35,137
CONTROL IN CEREBRAL PALSY. I

4444
02:49:35,137 --> 02:49:37,039
MUST HAVE BEEN HUNGRY WHEN I WAS

4445
02:49:37,039 --> 02:49:39,642
PUTTING TOGETHER THIS

4446
02:49:39,642 --> 02:49:40,976
PRESENTATION, BUT THINKING ABOUT

4447
02:49:40,976 --> 02:49:43,913
CORE ELEMENTS TO BUILD STUDY AND

4448
02:49:43,913 --> 02:49:46,515
PROPOSAL FOR OUR TEAM, I THINK

4449
02:49:46,515 --> 02:49:49,618
ABOUT A SANDWICH. FIRST YOU NEED

4450
02:49:49,618 --> 02:49:51,720
YOUR PLATE. YOU NEED FUNDAMENTAL

4451
02:49:51,720 --> 02:49:54,790
LEAD DRIVEN BY COMMUNITY, DRIP

4452
02:49:54,790 --> 02:49:55,925
BY CLINIC, THE PEOPLE WITH

4453
02:49:55,925 --> 02:49:58,260
CEREBRAL PALSY. WHEN IT COMES TO

4454
02:49:58,260 --> 02:50:00,629
THE SCIENCE YOU NEED THESE TWO

4455
02:50:00,629 --> 02:50:03,432
CORE PIECES, YOUR BIG PIECES OF

4456
02:50:03,432 --> 02:50:05,401
BREAD AND THOSE ARE THE SCIENCE

4457
02:50:05,401 --> 02:50:07,770
OF THE TEAM AND WITHOUT THOSE

4458
02:50:07,770 --> 02:50:09,472
WHATEVER YOUR COOL TECHNOLOGY OR

4459
02:50:09,472 --> 02:50:11,507
TECHNIQUE A STUDY AND PROTOCOL

4460
02:50:11,507 --> 02:50:15,945
WON'T REALLY WORK. AND IT ISEN

4461
02:50:15,945 --> 02:50:17,713
UNTIL YOU GET TO MIDDLE WHETHER

4462
02:50:17,713 --> 02:50:19,348
PEANUT BUTTER AND JELLY OR MEAT

4463
02:50:19,348 --> 02:50:21,350
THAT YOU GET TO THAT SPECIAL

4464
02:50:21,350 --> 02:50:25,154
SAUCE. FOR ME THAT SPECIAL SAUCE

4465
02:50:25,154 --> 02:50:27,022
IS TECHNOLOGY AND TOOLS MODDING

4466
02:50:27,022 --> 02:50:28,891
AND SIMULATION AND MACHINE

4467
02:50:28,891 --> 02:50:31,026
LEARNING BUT THAT SPECIAL SAUCE

4468
02:50:31,026 --> 02:50:31,927
CAN BE WHATEVER FITS YOUR

4469
02:50:31,927 --> 02:50:33,162
EXPERTISE AND BACKGROUND AND

4470
02:50:33,162 --> 02:50:35,764
KNOWLEDGE AND YOUR TEAM. THAT IS

4471
02:50:35,764 --> 02:50:39,368
THIS CORE SCIENCE AND TEAM WE

4472
02:50:39,368 --> 02:50:41,036
NEED, IN ORDER TO MOBILIZE

4473
02:50:41,036 --> 02:50:42,204
CEREBRAL PALSY AND PUSH FORWARD

4474
02:50:42,204 --> 02:50:46,642
OUR UNDERSTANDING.  SO U WILL

4475
02:50:46,642 --> 02:50:48,244
GIVE YOU ONE EXAMPLE OF THIS FOR

4476
02:50:48,244 --> 02:50:49,378
OUR TEAM AND HOW WE THOUGHT

4477
02:50:49,378 --> 02:50:51,280
ABOUT IT. IN PARTICULAR, I WILL

4478
02:50:51,280 --> 02:50:55,217
GO AND START WITH WHERE MANY

4479
02:50:55,217 --> 02:50:57,152
NEEDS IN OUR COMMUNITY START IN

4480
02:50:57,152 --> 02:51:00,589
CLINICAL ANALYSIS LAB. AS A

4481
02:51:00,589 --> 02:51:02,491
YOUNG ENGINEER LOOKING IN THE

4482
02:51:02,491 --> 02:51:04,627
THE CLINICAL LAB WE HAVE KIDS

4483
02:51:04,627 --> 02:51:06,695
COME IN EACH DAY, ANALYZE AND

4484
02:51:06,695 --> 02:51:08,631
THEN SIT Z A TEAM TO TRY TO

4485
02:51:08,631 --> 02:51:09,832
UNDERSTAND THE BEST TREATMENT

4486
02:51:09,832 --> 02:51:12,935
OPTION FOR EACH CHILD. YOUR

4487
02:51:12,935 --> 02:51:15,037
COMMENTS LIKE SHE HAS POOR

4488
02:51:15,037 --> 02:51:17,506
CONTROL, HESITANT TO RECOMMEND

4489
02:51:17,506 --> 02:51:20,109
SURGERY OR HE HAS A REALLY GREAT

4490
02:51:20,109 --> 02:51:21,610
MOTOR CONTROL, GREAT AT WHATEVER

4491
02:51:21,610 --> 02:51:24,146
WE DO. THEN WE LOOK AT THE DATA,

4492
02:51:24,146 --> 02:51:29,084
WE HAVE A LOT OF DATA. WE HAVE

4493
02:51:29,084 --> 02:51:30,786
OUR EMG, WHICH MOST OF THE TIME

4494
02:51:30,786 --> 02:51:32,454
WAS IGNORED.  OF BUT WHEN IT

4495
02:51:32,454 --> 02:51:33,923
CAME TO UNDERSTANDING THE

4496
02:51:33,923 --> 02:51:35,624
STRATEGY THAT WE USE TO RECRUIT

4497
02:51:35,624 --> 02:51:38,961
AND COORDINATE OUR MUSCLES MOTOR

4498
02:51:38,961 --> 02:51:40,863
DROLL, WE DIDN'T HAVE GOOD TOOLS

4499
02:51:40,863 --> 02:51:42,731
HOW TO QUANTIFY MOTOR CONTROL.

4500
02:51:42,731 --> 02:51:44,266
SO ONE BIG AREA I WOULD BE

4501
02:51:44,266 --> 02:51:46,835
INTERESTED IN THE LAST DECADE IS

4502
02:51:46,835 --> 02:51:48,837
UNDERSTANDING THE HOW WE

4503
02:51:48,837 --> 02:51:50,172
QUANTIFY THAT MOTOR CONTROL. GO

4504
02:51:50,172 --> 02:51:52,241
FROM THAT DATA IN THE LAB TO

4505
02:51:52,241 --> 02:51:57,746
ACTIONABLE INSIGHT THAT SUPPORT

4506
02:51:57,746 --> 02:51:59,181
BOTH FUNCTION IN DAILY LIFE AND

4507
02:51:59,181 --> 02:52:00,482
TREATMENT DECISIONS. THAT'S

4508
02:52:00,482 --> 02:52:01,884
WHERE WE TURN TO THE SCIENCE. IN

4509
02:52:01,884 --> 02:52:03,786
THIS CASE YOU HAVE A GREAT

4510
02:52:03,786 --> 02:52:04,987
HISTORY OF CLINICAL NEUROSCIENCE

4511
02:52:04,987 --> 02:52:07,690
WORK TO BUILD ON. IN PARTICULAR

4512
02:52:07,690 --> 02:52:09,725
WE HAVE SPOKEN TO MUSCLE

4513
02:52:09,725 --> 02:52:10,826
SYNERGIES BECAUSE WE HAVE AN

4514
02:52:10,826 --> 02:52:12,261
ACTIONABLE TOOL, FROM

4515
02:52:12,261 --> 02:52:14,463
NON-INVASIVE EMG, HARD TO BE

4516
02:52:14,463 --> 02:52:17,700
INFLECTIVE MANY THE CLINIC.  AND

4517
02:52:17,700 --> 02:52:19,768
HIGHER WORK IN STROKE STEPPING

4518
02:52:19,768 --> 02:52:21,904
INFANTS, INCOMPLETE SPINAL CORD

4519
02:52:21,904 --> 02:52:24,607
INJURY HAVE SHOWN COMMON

4520
02:52:24,607 --> 02:52:26,775
PATTERNS OF SYNERGIES USED TO

4521
02:52:26,775 --> 02:52:28,510
CONTROL WALKING SO WE HAVE

4522
02:52:28,510 --> 02:52:30,412
HYPOTHESIZE THAT PEOPLE WITH

4523
02:52:30,412 --> 02:52:31,780
CEREBRAL PALSY USE SIMILAR

4524
02:52:31,780 --> 02:52:33,182
SIMPLIFIED CONTROL DONE DYNAMIC

4525
02:52:33,182 --> 02:52:35,351
MOVEMENT AND ACTIVITIES OF DAILY

4526
02:52:35,351 --> 02:52:38,387
LIVING. FURTHERMORE HYPOTHESIZE

4527
02:52:38,387 --> 02:52:41,924
THIS LEVEL OF CONTROL WAS

4528
02:52:41,924 --> 02:52:42,925
PERSONALIZED TO EACH INDIVIDUAL

4529
02:52:42,925 --> 02:52:44,493
AND RELATED TO WALKING FUNCTION

4530
02:52:44,493 --> 02:52:48,897
AND TREATMENT OUTCOME. WE HAVE A

4531
02:52:48,897 --> 02:52:50,232
SCIENCE THAT FUNDAMENTAL, OFTEN

4532
02:52:50,232 --> 02:52:52,301
TO THINK ABOUT WE ARE RIGHT,

4533
02:52:52,301 --> 02:52:55,270
WHAT IF THIS HYPOTHESIS IS TRUE,

4534
02:52:55,270 --> 02:52:56,939
THIS IS WHAT IS EXCITED ABOUT

4535
02:52:56,939 --> 02:52:59,341
THE SCIENCE. IF HE HYPOTHESES

4536
02:52:59,341 --> 02:53:01,677
WERE TRUE IT OFFERS PERSONALIZED

4537
02:53:01,677 --> 02:53:03,746
NEGATIVE CONTROL, USED TO ASSESS

4538
02:53:03,746 --> 02:53:04,913
FUNCTION INFORM TREATMENT

4539
02:53:04,913 --> 02:53:08,017
DECISIONS AND PERSONALIZE

4540
02:53:08,017 --> 02:53:09,451
MUSCULOSKELETAL MODELS AND REHAB

4541
02:53:09,451 --> 02:53:14,790
INTERVENTIONS.  HOWEVER, ALWAYS

4542
02:53:14,790 --> 02:53:17,960
HAS ON MY SHOULDER RESIDING WHAT

4543
02:53:17,960 --> 02:53:20,496
IF YOU ARE WRONG? THAT WAS WHERE

4544
02:53:20,496 --> 02:53:21,964
WE HAD TO CHALLENGE OURSELVES,

4545
02:53:21,964 --> 02:53:25,100
DESIGNING THE PROSPECTIVE AND

4546
02:53:25,100 --> 02:53:26,502
RETROSPECTIVE STUDIES TO SAY

4547
02:53:26,502 --> 02:53:28,771
WHAT WE LEARN IF WE WERE WRONG,

4548
02:53:28,771 --> 02:53:30,039
HOW WOULD CUP QUANTIFY AND

4549
02:53:30,039 --> 02:53:32,374
CONTROL AND UNDERSTANDING HOW

4550
02:53:32,374 --> 02:53:33,942
SIMILAR DIFFERENT FROM STROKE

4551
02:53:33,942 --> 02:53:35,511
AND SPINAL CORD INJURY ADVANCE

4552
02:53:35,511 --> 02:53:36,979
OUR UNDERSTANDING OF THE SCIENCE

4553
02:53:36,979 --> 02:53:40,115
AND INFORM TOOLS SUCH AS HOW WE

4554
02:53:40,115 --> 02:53:41,483
USE MUSCULOSKELETAL MODELING SO

4555
02:53:41,483 --> 02:53:42,651
I HOUND THIS AS A USEFUL TOOL

4556
02:53:42,651 --> 02:53:44,787
FOR CHALLENGING ASSUMPTIONS AND

4557
02:53:44,787 --> 02:53:45,788
BUILDING OUR EXPERIMENTAL

4558
02:53:45,788 --> 02:53:48,891
DESIGN. SO IN THIS CASE WE

4559
02:53:48,891 --> 02:53:50,059
DISCUSS NOW OUR SCIENCE. WE ARE

4560
02:53:50,059 --> 02:53:53,162
BUILDING ON THE FUNDAMENTALS OF

4561
02:53:53,162 --> 02:53:54,596
NEUROSIGN SCIENCE USING TOOLS

4562
02:53:54,596 --> 02:53:56,231
WIDELY AVAILABLE WITHIN THE

4563
02:53:56,231 --> 02:54:00,269
CLINIC AND USED OFTEN. NOW COME

4564
02:54:00,269 --> 02:54:02,271
TO OTHER HEARTY PIECES OF BREAD,

4565
02:54:02,271 --> 02:54:04,239
THE TEAM. THIS IS WHERE -- WE

4566
02:54:04,239 --> 02:54:05,908
HAVE BEEN AMAZING COLLABORATIVE

4567
02:54:05,908 --> 02:54:09,411
TEAM, SURGEONS, THERAPISTS,

4568
02:54:09,411 --> 02:54:11,847
CLINICIANS. AT BOTH SPECIALTY

4569
02:54:11,847 --> 02:54:12,548
HEALTHCARE THAT WE HAVE BEEN

4570
02:54:12,548 --> 02:54:14,016
LUCKY TO WORK WITH ON THIS

4571
02:54:14,016 --> 02:54:17,119
PROJECT.  ALSO LIKE TO SAY THE

4572
02:54:17,119 --> 02:54:18,153
OTHER PIECE IS TRAINING. YOU

4573
02:54:18,153 --> 02:54:18,987
HAVE TO MAKE SURE YOUR TEAM HAS

4574
02:54:18,987 --> 02:54:22,491
THE EXPERTISE TO ADDRESS THE

4575
02:54:22,491 --> 02:54:24,293
SCIENCE YOU ARE INTERESTED IN H.

4576
02:54:24,293 --> 02:54:25,961
IN MY CASE AFTER MY Ph.D. I

4577
02:54:25,961 --> 02:54:27,629
HAVE BACKGROUND IN

4578
02:54:27,629 --> 02:54:29,598
MUSCULOSKELETAL BIOMECHANICS BUT

4579
02:54:29,598 --> 02:54:31,233
DIDN'T KNOW AS MUCH ABOUT

4580
02:54:31,233 --> 02:54:32,234
NEUROMUSCULAR CONTROL SO I

4581
02:54:32,234 --> 02:54:38,741
DECIDED TO GO TO NORTHWESTERN TO

4582
02:54:38,741 --> 02:54:40,042
WORK WITH GNARL (INAUDIBLE)

4583
02:54:40,042 --> 02:54:40,642
SPECIFICALLY WITH THIS THOUGHT

4584
02:54:40,642 --> 02:54:44,980
IN MIND TO DEEPEN MY

4585
02:54:44,980 --> 02:54:48,283
UNDERSTANDING IT IS IMPORTANT TO

4586
02:54:48,283 --> 02:54:49,585
UNDERSTAND YOU CAN'T PAUSE THE

4587
02:54:49,585 --> 02:54:50,986
PURSUIT IF YOU CAN FIND IT FROM

4588
02:54:50,986 --> 02:54:51,854
OTHER PLACES TO MAKE SURE YOU

4589
02:54:51,854 --> 02:54:56,925
HAVE THE EXPERTISE PUSH FORWARD

4590
02:54:56,925 --> 02:54:58,827
WITH TEAM AND THE SCIENCE SO

4591
02:54:58,827 --> 02:55:03,399
FROM THIS EXCELLENT SCIENCE

4592
02:55:03,399 --> 02:55:06,635
TEAM, WHAT IT LOOKS LIKE FOR

4593
02:55:06,635 --> 02:55:08,437
KIDS WITH CEREBRAL PALSY. WHAT

4594
02:55:08,437 --> 02:55:10,739
THEY FOUND IN STROKE AND SPINAL

4595
02:55:10,739 --> 02:55:14,009
CORD INJURY YOU DID A REPRO

4596
02:55:14,009 --> 02:55:15,744
SPECKTIVE AND PROSPECTIVE

4597
02:55:15,744 --> 02:55:17,146
ANALYSES THE SYNERGIES WERE

4598
02:55:17,146 --> 02:55:18,447
SIMILAR WHAT WE HAVE SEEN IN

4599
02:55:18,447 --> 02:55:21,583
OTHER DISORDERS AND (INAUDIBLE)

4600
02:55:21,583 --> 02:55:26,755
TWO SYNERGIES DRIVING THE MOTION

4601
02:55:26,755 --> 02:55:27,923
BUT THEN WE LOOKED DEEPER TO

4602
02:55:27,923 --> 02:55:29,425
UNDERSTAND THE PATTERNS AND HOW

4603
02:55:29,425 --> 02:55:32,694
TO PERSONALIZE FOR TREATMENT.

4604
02:55:32,694 --> 02:55:34,997
HERE IS A MEASURE THE TOTAL

4605
02:55:34,997 --> 02:55:36,532
VARIANTS BY GIVEN NUMBER OF

4606
02:55:36,532 --> 02:55:37,833
SYNERGIES AND COMPARED TO

4607
02:55:37,833 --> 02:55:39,435
NON-DISABLED PEERS, IMPAIRMENT

4608
02:55:39,435 --> 02:55:44,807
LEVEL INCREASED, WE SAW IN

4609
02:55:44,807 --> 02:55:45,741
CEREBRAL PALSY CHILDREN WITH IT

4610
02:55:45,741 --> 02:55:49,077
HAD MORE SIMPLIFIED CONTROL,

4611
02:55:49,077 --> 02:55:50,879
WHEREAS SMALLISH MANY AEGISES

4612
02:55:50,879 --> 02:55:51,613
AND CHARACTERIZE MUSCLE

4613
02:55:51,613 --> 02:55:52,915
COORDINATION.  WE WANT TO

4614
02:55:52,915 --> 02:55:55,951
TRANSLATE TO CLINIC AND FOCUS ON

4615
02:55:55,951 --> 02:55:59,555
FINDING MEASURES WHICH ARE

4616
02:55:59,555 --> 02:56:01,657
ACCOUNTEDDED FOR ONE SYNERGY AND

4617
02:56:01,657 --> 02:56:05,994
TRANSLATED BACK TO A SURE THAT

4618
02:56:05,994 --> 02:56:08,163
MATCHED CURRENT NORMS AND WE SEE

4619
02:56:08,163 --> 02:56:10,465
METRICS WHERE LIKE THE DEVIATION

4620
02:56:10,465 --> 02:56:13,035
INDEX WERE HUNDRED IS SIMILAR TO

4621
02:56:13,035 --> 02:56:14,303
NON-DISABLED PEERS AND TIME

4622
02:56:14,303 --> 02:56:17,439
POINTS ONE STANDARD DEVIATION

4623
02:56:17,439 --> 02:56:20,676
FROM THAT, THAT MAKE

4624
02:56:20,676 --> 02:56:23,479
INTERPRETATION EASIER. SIMILAR

4625
02:56:23,479 --> 02:56:24,680
MEASURES OF CONTROL WHICH IS

4626
02:56:24,680 --> 02:56:28,717
NORMALIZED. SO NOW THIS ABLE TO

4627
02:56:28,717 --> 02:56:31,220
HAVE EXTRA KEY IN THE LAB FOR

4628
02:56:31,220 --> 02:56:33,555
EXAMPLE I TAKE THE -- FOR THESE

4629
02:56:33,555 --> 02:56:35,824
TWO KIDS, THE GATE DEVIATION

4630
02:56:35,824 --> 02:56:43,465
INDEX IS MATCHED AT 74. DATA TWO

4631
02:56:43,465 --> 02:56:44,733
AND A HALF STANDARD DEVIATIONS

4632
02:56:44,733 --> 02:56:46,768
THAN PEERS. THE DYNAMIC MOTOR

4633
02:56:46,768 --> 02:56:48,337
CONTROL WE CAN SEE THIS LADY IS

4634
02:56:48,337 --> 02:56:50,472
TWO STANDARD DEVIATIONS FROM

4635
02:56:50,472 --> 02:56:53,041
TYPICALLY DEVELOPING CASE WHILE

4636
02:56:53,041 --> 02:56:54,910
YOUNG MAN IS WITHIN RANGE OF

4637
02:56:54,910 --> 02:56:57,579
PEERS AS WELL. SO THIS GAVE US

4638
02:56:57,579 --> 02:57:01,183
TOOLS TO USE IN THE CLINIC. WE

4639
02:57:01,183 --> 02:57:03,051
ALSO LOOKED AT TREATMENT

4640
02:57:03,051 --> 02:57:06,288
OUTCOMES. TO TEST THAT SECOND

4641
02:57:06,288 --> 02:57:08,957
HYPOTHESIS SO WHETHER TOXIN --

4642
02:57:08,957 --> 02:57:14,062
BOTULINUM TOXIN INJECTION OR --

4643
02:57:14,062 --> 02:57:16,999
WE TESTED THE RETROSPECTIVE DATA

4644
02:57:16,999 --> 02:57:19,635
SETS TO UNDERSTAND WHETHER OR

4645
02:57:19,635 --> 02:57:21,336
NOT DYNAMIC MOTOR CONTROL WAS

4646
02:57:21,336 --> 02:57:23,705
ASSOCIATED WITH OUTCOMES AND

4647
02:57:23,705 --> 02:57:24,773
ACROSS HOSPITALS DIFFERENT

4648
02:57:24,773 --> 02:57:27,609
SYNERGY WE FOUND THAT DYNAMIC

4649
02:57:27,609 --> 02:57:30,412
CONTROL WAS RELATED TO WALKING

4650
02:57:30,412 --> 02:57:32,147
SPEED DEVIATION DEFECTS AND

4651
02:57:32,147 --> 02:57:33,548
OTHER OUTCOME MEASURES BUT IT IS

4652
02:57:33,548 --> 02:57:36,351
IMPORTANT TO HAVE THIS BREADTH

4653
02:57:36,351 --> 02:57:38,387
OF TESTING IN CEREBRAL PALSY

4654
02:57:38,387 --> 02:57:40,889
BECAUSE WE DO KNOW CLINICAL

4655
02:57:40,889 --> 02:57:43,025
PRACTICE VARY SOS SO MUCH

4656
02:57:43,025 --> 02:57:46,061
BETWEEN DIFFERENT LOCATIONS. SO

4657
02:57:46,061 --> 02:57:48,196
THIS WAS OUR CORE HEARTY BREAD

4658
02:57:48,196 --> 02:57:50,632
PIECES THE SCIENCE TEAM, WE HAD

4659
02:57:50,632 --> 02:57:51,767
A SPECIAL SAUCE IN TERMS OF

4660
02:57:51,767 --> 02:57:54,002
ANALYZING THE EMG DATA BUT

4661
02:57:54,002 --> 02:57:54,970
ESPECIALLY OUR SPECIAL SAUCE TO

4662
02:57:54,970 --> 02:57:58,907
DIVE A LITTLE DEEPER WHERE USE

4663
02:57:58,907 --> 02:58:00,409
MULTIPLE APPROACHES TO TRY TO

4664
02:58:00,409 --> 02:58:02,911
PROVE YOURSELF WRONG.  IN OUR

4665
02:58:02,911 --> 02:58:05,280
CASE ONE AREA WAS TURNING THE

4666
02:58:05,280 --> 02:58:06,615
MUSCULOSKELETAL SIMULATION WHERE

4667
02:58:06,615 --> 02:58:08,550
WE COULD SAY WELL, WE CAN ASK

4668
02:58:08,550 --> 02:58:09,584
THOSE WHAT IF QUESTIONS BUT WE

4669
02:58:09,584 --> 02:58:13,055
CAN'T DO EXPERIMENTALLY. SUCH AS

4670
02:58:13,055 --> 02:58:15,724
CAN SYNERGIES CONTROL

4671
02:58:15,724 --> 02:58:18,327
NON-DISABLED PATTERN? ONE OF OUR

4672
02:58:18,327 --> 02:58:21,496
POST DOCS ABLE TO SHOW NICELY

4673
02:58:21,496 --> 02:58:23,131
WHILE NON-DISABLED SYNERGIES

4674
02:58:23,131 --> 02:58:28,303
LIKE IN PEERS, EVEN FOUR TIMES

4675
02:58:28,303 --> 02:58:29,204
THREE SHY NEAR WHETHER IS YOU

4676
02:58:29,204 --> 02:58:30,939
COULD CONTROL NON-DISABLED GATE

4677
02:58:30,939 --> 02:58:32,207
PATTERN BUT WHEN WE GOT TO THE

4678
02:58:32,207 --> 02:58:34,142
LEVEL OF TWO SYNERGIES WHEN THAT

4679
02:58:34,142 --> 02:58:36,712
WAS INPUT TO THE MODEL,

4680
02:58:36,712 --> 02:58:38,614
DIFFERENT GATE PATTERNS EMERGE

4681
02:58:38,614 --> 02:58:40,849
AND WE CAN NO LONGER ATTRACT

4682
02:58:40,849 --> 02:58:42,851
THAT NON-DISABLED GATE PA FERN

4683
02:58:42,851 --> 02:58:44,286
PROVIDING SUPPORT FOR HYPOTHESIS

4684
02:58:44,286 --> 02:58:46,254
THAT SIMPLIFIED (INAUDIBLE)

4685
02:58:46,254 --> 02:58:49,057
IMPAIRS WALKING FUNCTION.

4686
02:58:49,057 --> 02:58:50,292
FURTHER LATELY EXCITED TO DIVE

4687
02:58:50,292 --> 02:58:52,761
DEEPER AND LOOKING AT NEW

4688
02:58:52,761 --> 02:58:54,262
METHODS NEW SPECIAL SAUCES FOR

4689
02:58:54,262 --> 02:58:55,731
ADDITIONAL SANDWICHES. AND

4690
02:58:55,731 --> 02:58:59,668
ESPECIALLY TRYING TO MOVE BEYOND

4691
02:58:59,668 --> 02:59:00,736
CORRELATION, AND LINEAR

4692
02:59:00,736 --> 02:59:02,671
REGRESSION IN ANALYSES. WHERE WE

4693
02:59:02,671 --> 02:59:04,606
FOUND CAUSAL MODELING AND

4694
02:59:04,606 --> 02:59:05,907
MACHINE LEARNING TO BE USEFUL

4695
02:59:05,907 --> 02:59:08,877
TOOLS FOR UNDERSTANDING THE

4696
02:59:08,877 --> 02:59:10,178
COMPLEXITIES OF HUMAN MOVEMENT

4697
02:59:10,178 --> 02:59:13,181
AND NEUROLOGIC INJURIES.  WE USE

4698
02:59:13,181 --> 02:59:15,884
DIRECTED GRAPHSEN CAUSAL MODEL

4699
02:59:15,884 --> 02:59:19,388
TO FORCE US TO STATE ASSUMPTIONS

4700
02:59:19,388 --> 02:59:20,756
UNDERSTANDING THE RELATIONSHIPS

4701
02:59:20,756 --> 02:59:21,857
BETWEEN IMPAIRMENT SUCH AS

4702
02:59:21,857 --> 02:59:23,358
IMPAIRED MOTOR CONTROL AND

4703
02:59:23,358 --> 02:59:25,293
OUTCOMES AFTER TREATMENT LIKE

4704
02:59:25,293 --> 02:59:26,895
MULTI-LEVEL ORTHOPEDIC SURGERY.

4705
02:59:26,895 --> 02:59:29,031
ALSO USING MACHINE LEARNING

4706
02:59:29,031 --> 02:59:30,532
METHODS SUCH AS (INAUDIBLE)

4707
02:59:30,532 --> 02:59:31,833
REGRESSION TREES WE CAN GET AT

4708
02:59:31,833 --> 02:59:34,636
THOSE NON-LINEAR INTERACTING

4709
02:59:34,636 --> 02:59:36,938
EFFECTS THAT CAN BE CHALLENGING

4710
02:59:36,938 --> 02:59:41,610
TO CAPTURE. AS ONE EXAMPLE USING

4711
02:59:41,610 --> 02:59:43,145
THAT DATA AND ADD ATIVE

4712
02:59:43,145 --> 02:59:47,349
REGRESSION TREE ANALYSIS

4713
02:59:47,349 --> 02:59:48,750
PROSPECTIVE DATA BEFORE AND

4714
02:59:48,750 --> 02:59:49,951
AFTER SURGERY THEY LOOK AT AT

4715
02:59:49,951 --> 02:59:51,987
ROLES OF DIFFERENT IMPAIRMENT

4716
02:59:51,987 --> 02:59:53,088
WHETHER MOTOR CONTROL, STRENGTH

4717
02:59:53,088 --> 02:59:56,324
PLASTICITY, RANGE OF MOTION AND

4718
02:59:56,324 --> 02:59:59,061
MORPHOLOGY ON DEVIATION INDEX.

4719
02:59:59,061 --> 03:00:01,163
THESE POTTS AFTER THESE ANALYSES

4720
03:00:01,163 --> 03:00:03,398
YOU CAN SEE BOTH NON-LINEAR SO

4721
03:00:03,398 --> 03:00:04,766
DON'T ASSUME MANY THINGS IN THE

4722
03:00:04,766 --> 03:00:05,934
TREATMENT SYSTEM ARE LINEAR --

4723
03:00:05,934 --> 03:00:07,703
WOULD BE REPRESENTED BY THE

4724
03:00:07,703 --> 03:00:10,572
LINEAR REGRESSION BUT ALSO

4725
03:00:10,572 --> 03:00:13,875
SHOWING THE EFFECT ACCOUNTING

4726
03:00:13,875 --> 03:00:17,279
FOR OTHER FACTORS IN THE MODEL.

4727
03:00:17,279 --> 03:00:19,114
SO WE SAW DYNAMIC MOTOR CONTROL

4728
03:00:19,114 --> 03:00:21,616
WE MEASURE EMG WHILE WALKING BUT

4729
03:00:21,616 --> 03:00:25,954
SELECTIVE MOTOR CONTROL. TAKEN

4730
03:00:25,954 --> 03:00:27,889
DURING PHYSICAL EXAM ASKING WHY

4731
03:00:27,889 --> 03:00:28,690
WOULDOR CHILD TO ISOLATE

4732
03:00:28,690 --> 03:00:30,559
MOVEMENT AT ONE JOINT, TWO

4733
03:00:30,559 --> 03:00:33,762
LARGEST EFFECTS ON A CHILD

4734
03:00:33,762 --> 03:00:35,564
DEVIATION INDEX. STRENGTH HAD

4735
03:00:35,564 --> 03:00:37,666
LARGE EFFECT BUT OTHER FACTORS

4736
03:00:37,666 --> 03:00:40,335
LIKE PALACE PALACE AT THIS,

4737
03:00:40,335 --> 03:00:44,439
RANGE OF MOTION, BONE MORPHOLOGY

4738
03:00:44,439 --> 03:00:45,173
TIBIA AND FEMME MORAL PORTION

4739
03:00:45,173 --> 03:00:45,974
HAD LIFT EFFECT SO WE ARE

4740
03:00:45,974 --> 03:00:47,943
EXCITED ABOUT THESE NEW SPECIAL

4741
03:00:47,943 --> 03:00:50,545
SAUCES TO HELP DIVE DEEPER AND

4742
03:00:50,545 --> 03:00:52,748
UNDERSTAND INTERACTING AFFECT OF

4743
03:00:52,748 --> 03:00:56,852
IMPAIRMENT IN CEREBRAL PALSY. SO

4744
03:00:56,852 --> 03:00:58,753
THROUGH ALL THIS, NEXT QUICK

4745
03:00:58,753 --> 03:01:00,288
EXAMPLE OF ONE OUR SANDWICHES

4746
03:01:00,288 --> 03:01:02,090
AND HOW WE HAVE GONE FROM TEAM,

4747
03:01:02,090 --> 03:01:05,694
SCIENCE TO HOPING TRANSLATE TO

4748
03:01:05,694 --> 03:01:08,330
THE NEED WHICH IS A DEVELOPING

4749
03:01:08,330 --> 03:01:09,631
PERSONALIZED MEASURES OF MOTOR

4750
03:01:09,631 --> 03:01:11,032
CONTROL AND UNDERSTANDING OF

4751
03:01:11,032 --> 03:01:11,967
THOSE RELATED TO FUNCTION AND

4752
03:01:11,967 --> 03:01:14,469
TREATMENT OUTCOMES.  FROM THIS

4753
03:01:14,469 --> 03:01:16,738
WE HAVE SEEN MOTOR CONTROL IS

4754
03:01:16,738 --> 03:01:17,439
SIMPLIFIED IN CEREBRAL PALSY. IT

4755
03:01:17,439 --> 03:01:19,341
DOES IMPAIR WALKING FUNCTION.

4756
03:01:19,341 --> 03:01:21,143
AND UNFORTUNATELY HAS MINIMAL

4757
03:01:21,143 --> 03:01:22,010
CHANGE AFTER TREATMENT. WE HAVE

4758
03:01:22,010 --> 03:01:23,912
SEEN CONSISTENTLY THAT SYNERGIES

4759
03:01:23,912 --> 03:01:26,248
ARE VERY DIFFICULT TO CHANGE. 

4760
03:01:26,248 --> 03:01:27,949
THE GREAT THING ABOUT THESE

4761
03:01:27,949 --> 03:01:30,685
SANDWICHES IS THEY OFTEN LEAD TO

4762
03:01:30,685 --> 03:01:33,121
MORE SANDWICHES. A LOFT UNKNOWNS

4763
03:01:33,121 --> 03:01:35,757
CURIOUS AND EXCITED ABOUT IS

4764
03:01:35,757 --> 03:01:36,758
UNDERSTANDING HOW DO THESE

4765
03:01:36,758 --> 03:01:38,260
INFLUENCE TREATMENT OUTCOMES AND

4766
03:01:38,260 --> 03:01:39,327
HOW THEY SHOULD BE USED IN

4767
03:01:39,327 --> 03:01:40,495
TREATMENT DECISION PROCESS. 

4768
03:01:40,495 --> 03:01:42,497
FROM THE MORE BASIC NEUROSCIENCE

4769
03:01:42,497 --> 03:01:44,633
PERSPECTIVE, WE THINK THEY MAY

4770
03:01:44,633 --> 03:01:46,001
HAVE REFLECT SPINAL CIRCUIT BUS

4771
03:01:46,001 --> 03:01:48,870
DO THEY REALLY REFLECT THAT

4772
03:01:48,870 --> 03:01:50,138
SUPER SPINAL CORTICAL SPINAL

4773
03:01:50,138 --> 03:01:52,774
CONTROL? CHANGED WITH TARGETED

4774
03:01:52,774 --> 03:01:55,043
TRAINING? AND HAVING ALTERED

4775
03:01:55,043 --> 03:01:57,445
CONTROL DOES THAT MAKE CERTAIN

4776
03:01:57,445 --> 03:01:59,814
ADAPTATIONS WE SEE IN CEREBRAL

4777
03:01:59,814 --> 03:02:02,384
PALSY ADVANTAGEOUS SO I GET

4778
03:02:02,384 --> 03:02:04,419
EXCITED BY THIS BUFFET OF

4779
03:02:04,419 --> 03:02:07,355
SANDWICHES AND A FEW EXAMPLES,

4780
03:02:07,355 --> 03:02:13,061
HOW THESE CAN THEN BUILD ZACH

4781
03:02:13,061 --> 03:02:14,996
AND BEN CONNER NORTHERN ARIZONA

4782
03:02:14,996 --> 03:02:17,732
UNIVERSITY ADDED THEIR SPECIAL

4783
03:02:17,732 --> 03:02:19,434
SAUCE IN THIS CASE

4784
03:02:19,434 --> 03:02:20,335
BIOEXOSKELETON PROVIDE

4785
03:02:20,335 --> 03:02:22,804
ASSISTANCE OR RESISTANCE

4786
03:02:22,804 --> 03:02:24,506
TRAINING. WE SUBMIT SYNERGIES

4787
03:02:24,506 --> 03:02:26,608
ARE HARD TO CHANGE EVEN AFTER

4788
03:02:26,608 --> 03:02:29,110
MULTI-LEVEL ORTHOPEDIC SURGERY,

4789
03:02:29,110 --> 03:02:31,079
WHICH HAVE EXTENSIVE REHAB

4790
03:02:31,079 --> 03:02:33,515
AFTERWARDS BUT IN THEIR PILOT,

4791
03:02:33,515 --> 03:02:38,286
WE SAW ALL CHILDREN INCREASE

4792
03:02:38,286 --> 03:02:39,821
MOTOR CONTROL AFTER TREATMENT.

4793
03:02:39,821 --> 03:02:41,790
THEY NOW ARE INVESTIGATING THAT

4794
03:02:41,790 --> 03:02:43,792
PART OF IT BUT THE HYPOTHESIS

4795
03:02:43,792 --> 03:02:45,727
HAS BEEN THAT TARGETED TRAINING

4796
03:02:45,727 --> 03:02:49,998
AND IMPROVED CONTROL. AGAIN LOOK

4797
03:02:49,998 --> 03:02:51,499
AT WHAT THEY WERE FROM WHAT

4798
03:02:51,499 --> 03:02:53,602
COMES FROM THE EXPERIENCE WE

4799
03:02:53,602 --> 03:02:55,871
WILL RUN FUNDAMENTAL SCIENCE HOW

4800
03:02:55,871 --> 03:02:57,205
CEREBRAL PALSY ADAPT CONTROL AND

4801
03:02:57,205 --> 03:03:01,576
RESPONSE TO EXO SKELETON AND

4802
03:03:01,576 --> 03:03:04,179
INTERPLAY BETWEEN CONTROL VERSUS

4803
03:03:04,179 --> 03:03:05,313
FUNCTION. SIMILARLY ANOTHER

4804
03:03:05,313 --> 03:03:07,449
SANDWICH THAT OUR TEAM IS

4805
03:03:07,449 --> 03:03:10,018
EXCITED ABOUT, WE ARE INTERESTED

4806
03:03:10,018 --> 03:03:11,987
IN NEUROPLASTICITY AND

4807
03:03:11,987 --> 03:03:14,322
UNDERSTANDING HOW WE CAN MODIFY

4808
03:03:14,322 --> 03:03:16,124
AND SUPPORT CONTROL IN

4809
03:03:16,124 --> 03:03:17,459
INDIVIDUALS WITH CEREBRAL PALSY.

4810
03:03:17,459 --> 03:03:19,594
AND LUCKY TO HAVE AN EXCELLENT

4811
03:03:19,594 --> 03:03:21,930
TEAM COLLABORATING WITH CHRISTY

4812
03:03:21,930 --> 03:03:24,432
-- FROM PHYSICAL THERAPY AND

4813
03:03:24,432 --> 03:03:25,500
CHUCK FROM ELECTRICAL

4814
03:03:25,500 --> 03:03:26,701
ENGINEERING REHAB MEDICINE WE

4815
03:03:26,701 --> 03:03:29,170
CAN DIVE DEEPER INTO NEW

4816
03:03:29,170 --> 03:03:32,641
OPTIONS. WE THINK SYNERGIES

4817
03:03:32,641 --> 03:03:34,576
REFLECT GREATER SPINAL CIRCUITS

4818
03:03:34,576 --> 03:03:36,177
VERSUS THE FLEXIBLE CONTROL WE

4819
03:03:36,177 --> 03:03:38,413
GET WITH FLEXIBLE MOVEMENT AND

4820
03:03:38,413 --> 03:03:41,049
CONTROL FROM CORTICAL SPINAL

4821
03:03:41,049 --> 03:03:44,119
CONTROL. WE HYPOTHESIS HAS

4822
03:03:44,119 --> 03:03:48,590
DEFECT IN IMPAIRED MOVEMENT AND

4823
03:03:48,590 --> 03:03:51,826
USING CP. THESE HAVE SEEN

4824
03:03:51,826 --> 03:03:53,428
STIMULATION CAN INDUCE

4825
03:03:53,428 --> 03:03:56,197
NEUROPLASTICITY ACTING ALMOST

4826
03:03:56,197 --> 03:03:58,199
LIKE A HEARING AID FOR THE

4827
03:03:58,199 --> 03:04:00,568
SPINAL CORD AND AMPLIFYING

4828
03:04:00,568 --> 03:04:02,671
DEFECT WITH NON-INVASIVE SPINAL

4829
03:04:02,671 --> 03:04:04,072
STIMULATION SERVE AS TOOL TO

4830
03:04:04,072 --> 03:04:07,075
REDUCE PLASTICITY AND IMPROVE

4831
03:04:07,075 --> 03:04:08,410
MOVEMENT. BUT THEN AGAIN WITHOUT

4832
03:04:08,410 --> 03:04:09,644
THAT ON OUR SHOULDER WE THINK

4833
03:04:09,644 --> 03:04:11,680
HOW TO DESIGN THESE EXPERIMENTS

4834
03:04:11,680 --> 03:04:12,647
WE LEARN SOMETHING EVEN IF WE

4835
03:04:12,647 --> 03:04:14,549
ARE WRONG, CONDUCTING THE BASIC

4836
03:04:14,549 --> 03:04:15,817
NEUROMECHANICS MAKING SURE WE

4837
03:04:15,817 --> 03:04:17,819
ARE GETTING REFLECT AND MEASURES

4838
03:04:17,819 --> 03:04:20,255
OF CONTROL TO UNDERSTAND SPINAL

4839
03:04:20,255 --> 03:04:21,523
STIMULATION AND GATE TRAINING

4840
03:04:21,523 --> 03:04:25,427
CEREBRAL PALSY AT DEEPER LEVEL. 

4841
03:04:25,427 --> 03:04:28,530
CASE STUDIES SHOW PROMISING

4842
03:04:28,530 --> 03:04:30,031
RESULTS VERSUS STRAINING ALONE

4843
03:04:30,031 --> 03:04:31,499
AND TRAINING STIMULATION THE

4844
03:04:31,499 --> 03:04:34,302
FIRST TWO HAVE SHOW DECREASES IN

4845
03:04:34,302 --> 03:04:35,971
ELASTICITY.MENT SO WE CAN KEEP

4846
03:04:35,971 --> 03:04:37,839
BUILDING THESE SANDWICHES WITH

4847
03:04:37,839 --> 03:04:40,308
OUR EXCELLENT SCIENCE TEAM AND

4848
03:04:40,308 --> 03:04:44,079
SPECIAL SAUCES.  BEFORE I CLOSE

4849
03:04:44,079 --> 03:04:45,080
I WANT TO MENTION ONE MORE

4850
03:04:45,080 --> 03:04:47,182
ASPECT OF THE TEAM, EMPHASIZED

4851
03:04:47,182 --> 03:04:49,117
IN THE PRIOR TALK BUT IT IS

4852
03:04:49,117 --> 03:04:50,352
REALLY IMPORTANT TO MAKE SURE

4853
03:04:50,352 --> 03:04:52,954
THESE TEAMS ARE

4854
03:04:52,954 --> 03:04:53,621
MULTI-DISCIPLINARY, COMMUNITY

4855
03:04:53,621 --> 03:04:55,824
DRIVEN, WITH PEOPLE WITH CT AS

4856
03:04:55,824 --> 03:04:57,258
PARTNERS AND RESEARCH

4857
03:04:57,258 --> 03:04:58,493
ENVIRONMENTS AND TEAMS ARE

4858
03:04:58,493 --> 03:05:01,196
ACCESSIBLE AND INCLUSIVE. ON OUR

4859
03:05:01,196 --> 03:05:02,564
SIDE ONE AREA WE HAVE BEEN

4860
03:05:02,564 --> 03:05:05,367
WORKING ON ESPECIALLY ADVANCING

4861
03:05:05,367 --> 03:05:06,901
STEM CAREERS FOR INDIVIDUALS

4862
03:05:06,901 --> 03:05:09,938
WITH DISABILITIES SPORED BY NSF

4863
03:05:09,938 --> 03:05:11,973
ACCESS ENGINEERING PROGRAM TO

4864
03:05:11,973 --> 03:05:12,874
SUPPORT INDIVIDUALS WITH

4865
03:05:12,874 --> 03:05:14,075
DISABILITIES TO PURSUE CAREERS

4866
03:05:14,075 --> 03:05:16,611
IN ENGINEERING AND TRAINING ALL

4867
03:05:16,611 --> 03:05:17,979
ENGINEERS AND PRINCIPLES

4868
03:05:17,979 --> 03:05:20,448
INCLUSIVE DESIGN. SIMPLY THERE

4869
03:05:20,448 --> 03:05:22,617
IS ACCESS TO COMPUTER STYLES BUT

4870
03:05:22,617 --> 03:05:23,818
WITH THESE GROUPS WE DEVELOP

4871
03:05:23,818 --> 03:05:25,720
KNOWLEDGE BASES FOR HOW TO

4872
03:05:25,720 --> 03:05:28,323
ANALYZE LAB OR YOUR DEPARTMENT

4873
03:05:28,323 --> 03:05:29,624
ACCESSIBLE FOR INDIVIDUALS WITH

4874
03:05:29,624 --> 03:05:31,960
DISABILITIES, AS WELL AS WIDE

4875
03:05:31,960 --> 03:05:33,495
VARIETY OF OTHER RESOURCES IN

4876
03:05:33,495 --> 03:05:34,429
OUR KNOWLEDGE BASE.  WE HAVE

4877
03:05:34,429 --> 03:05:37,065
COMMUNITY OF PRACTICE FOR

4878
03:05:37,065 --> 03:05:38,533
PROFESSIONALS FACULTY AND

4879
03:05:38,533 --> 03:05:40,835
STUDENTS WITH DISABLES.  YOU CAN

4880
03:05:40,835 --> 03:05:44,105
FINDS ALL OF THAT INFORMATION

4881
03:05:44,105 --> 03:05:48,643
AND MORE WANT WEBSITE.  I KNOW

4882
03:05:48,643 --> 03:05:50,545
YOU HAVE EXCITING FASCINATING

4883
03:05:50,545 --> 03:05:55,784
RESEARCH YOU ARE PURSUING SO

4884
03:05:55,784 --> 03:05:58,553
HOPEFULLY THIS ANALOGY IS USEFUL

4885
03:05:58,553 --> 03:05:59,387
IF YOU HAVE THOSE KEY ELEMENTS

4886
03:05:59,387 --> 03:06:01,790
OF YOUR TEAM, YOUR SCIENCE AND

4887
03:06:01,790 --> 03:06:04,125
YOUR SPECIAL SAUCE. BUILT UPON

4888
03:06:04,125 --> 03:06:08,129
THAT FUNDAMENTAL LEAD. I

4889
03:06:08,129 --> 03:06:09,364
CHALLENGE YOU TO ASK YOURSELF

4890
03:06:09,364 --> 03:06:11,499
WHAT IF WE ARE WRONG AND CAN WE

4891
03:06:11,499 --> 03:06:13,535
DESIGN SCIENCE AND PROPERTY CAN

4892
03:06:13,535 --> 03:06:14,569
BELIEVE AND MAKE TWEAKS O TO IT

4893
03:06:14,569 --> 03:06:16,438
SO WE LEARN SOMETHING IMPORTANT

4894
03:06:16,438 --> 03:06:20,074
AND VALUABLE ABOUT UNDERLYING

4895
03:06:20,074 --> 03:06:20,675
MECHANISMS OF CEREBRAL PALSY

4896
03:06:20,675 --> 03:06:23,678
ADVANCE MOBILIZED FOR THE NEURO.

4897
03:06:23,678 --> 03:06:25,814
WITH THAT, I WANT TO THANK OUR

4898
03:06:25,814 --> 03:06:27,282
TEAM BOTH HERE AT UNIVERSITY OF

4899
03:06:27,282 --> 03:06:29,551
WASHINGTON AS WELL AS ALL OUR

4900
03:06:29,551 --> 03:06:30,718
AMAZING CLINICAL RESEARCH

4901
03:06:30,718 --> 03:06:32,587
PARTNERS AND I LOOK FORWARD TO

4902
03:06:32,587 --> 03:06:33,455
ANSWERING ANY QUESTIONS DURING

4903
03:06:33,455 --> 03:06:37,725
THE PANEL. THANK YOU. 

4904
03:06:37,725 --> 03:06:39,761
>> HI THANK YOU FOR THE

4905
03:06:39,761 --> 03:06:41,362
OPPORTUNITY TO BE HERE TODAY TO

4906
03:06:41,362 --> 03:06:43,798
PRESENT ON BEHALF OF THE

4907
03:06:43,798 --> 03:06:46,334
OVERSIGHT COMMITTEE ABOUT THE

4908
03:06:46,334 --> 03:06:48,102
NINDS COMMON DATA ELEMENTS FOR

4909
03:06:48,102 --> 03:06:49,104
CEREBRAL PALSY. WE WILL TALK A

4910
03:06:49,104 --> 03:06:54,742
LITTLE BIT ABOUT THEIR CURRENT

4911
03:06:54,742 --> 03:06:55,810
STATUS, FUTURE MODIFICATIONS

4912
03:06:55,810 --> 03:06:57,278
COMING AND WAYS RESEARCHERS AND

4913
03:06:57,278 --> 03:07:01,282
CLINICIANS CAN USE THEM.  WHAT

4914
03:07:01,282 --> 03:07:03,051
ARE COMMON DATA ELEMENTS AND

4915
03:07:03,051 --> 03:07:05,420
WHERE DID MY INVOLVEMENT

4916
03:07:05,420 --> 03:07:06,654
PARTICULARLY START WITH THIS AND

4917
03:07:06,654 --> 03:07:08,790
NUMBER OF OTHER MEMBERS OF

4918
03:07:08,790 --> 03:07:13,161
OVERSIGHT COMMITTEE? IN THE 2013

4919
03:07:13,161 --> 03:07:14,429
TO 2017 STRATEGIC PLAN OF THE

4920
03:07:14,429 --> 03:07:16,331
AMERICAN ACADEMY OF CEREBRAL

4921
03:07:16,331 --> 03:07:17,899
PALSY AND DEVELOPMENTAL

4922
03:07:17,899 --> 03:07:20,401
MEDICINE, PRIORITY AREA WAS

4923
03:07:20,401 --> 03:07:22,370
IDENTIFIED TO DEVELOP A COMMON

4924
03:07:22,370 --> 03:07:25,206
DATA SET OF MEANINGFUL MEASURES

4925
03:07:25,206 --> 03:07:26,341
FOR CEREBRAL PALSY TO TRY TO

4926
03:07:26,341 --> 03:07:28,543
IMPROVE OUR ABILITY TO MOVE

4927
03:07:28,543 --> 03:07:30,845
FORWARD WITH COLLECTING DATA IN

4928
03:07:30,845 --> 03:07:35,817
A CONSISTENT WAY AND TO PROMOTE

4929
03:07:35,817 --> 03:07:37,986
COLLABORATION ACROSS

4930
03:07:37,986 --> 03:07:40,421
INSTITUTIONS AND RESEARCHERS. IT

4931
03:07:40,421 --> 03:07:42,524
IS IMPORTANT TO ACKNOWLEDGE CDE

4932
03:07:42,524 --> 03:07:45,460
PROJECT ITSELF IS NOT REALLY A

4933
03:07:45,460 --> 03:07:46,728
DATABASE OF DATA BUT IT IS A

4934
03:07:46,728 --> 03:07:48,196
COLLECTION OF METADATA AND DATA

4935
03:07:48,196 --> 03:07:49,764
STANDARDS THAT CAN HELP US TO

4936
03:07:49,764 --> 03:07:52,534
IDENTIFY THE WAYS IN WHICH WE

4937
03:07:52,534 --> 03:07:55,103
COLLECT DATA AND HOW WE MEASURE

4938
03:07:55,103 --> 03:07:56,804
CERTAIN CONSTRUCTS SO THAT WE

4939
03:07:56,804 --> 03:07:58,506
ARE DOING CONSISTENTLY ACROSS

4940
03:07:58,506 --> 03:08:05,413
STUDIES AND QUESTIONS.  WE ARE

4941
03:08:05,413 --> 03:08:09,617
NOT THE FIRST, THIS WAS PART OF

4942
03:08:09,617 --> 03:08:12,320
THE STRATEGIC PLAN IN 2013 BUT

4943
03:08:12,320 --> 03:08:14,522
THE NINDS WAS WORKING AHEAD AT

4944
03:08:14,522 --> 03:08:16,724
COMMON DATA ELEMENTS FOR OTHER

4945
03:08:16,724 --> 03:08:19,861
DISEASE AREAS. IN 2009 THE NINDS

4946
03:08:19,861 --> 03:08:21,462
DATA COMMON DATA ELEMENTS

4947
03:08:21,462 --> 03:08:24,465
PROJECT STARTED WITH EACH

4948
03:08:24,465 --> 03:08:26,801
DISEASE AREAS. AND THIS BEGAN

4949
03:08:26,801 --> 03:08:28,903
INITIALLY MORE FOCALLY AND HAS

4950
03:08:28,903 --> 03:08:30,605
EXPANDED QUITE A BIT OVER TIME

4951
03:08:30,605 --> 03:08:33,308
TO INCLUDE OTHER AREAS OF NIH,

4952
03:08:33,308 --> 03:08:36,110
FEDERAL AGENCIES, NON-PROFIT

4953
03:08:36,110 --> 03:08:38,813
ORGANIZATIONS, ACADEMIC

4954
03:08:38,813 --> 03:08:40,048
INSTITUTIONS.  LIKE THE ONE I

4955
03:08:40,048 --> 03:08:41,983
WAS AFFILIATED WITH AND NATIONAL

4956
03:08:41,983 --> 03:08:44,752
ORGANIZATIONS LIKE THE AACM SO

4957
03:08:44,752 --> 03:08:47,422
THIS COLLABORATIVE EFFORT COMES

4958
03:08:47,422 --> 03:08:48,690
TOGETHER IN ORDER TO DEVELOP

4959
03:08:48,690 --> 03:08:51,526
THESE COMMON DATA ELEMENT

4960
03:08:51,526 --> 03:08:53,227
STRUCTURE FOR FOLKS TO USE AS

4961
03:08:53,227 --> 03:08:56,598
RELATES TO PARTICULAR DIAGNOSES

4962
03:08:56,598 --> 03:09:00,134
SUCH AS CEREBRAL PALSY. IF YOU

4963
03:09:00,134 --> 03:09:02,036
GO TO THE HOME PAGE RECENTLY

4964
03:09:02,036 --> 03:09:04,105
REDESIGN YOU WILL SEE 24

4965
03:09:04,105 --> 03:09:06,007
DIFFERENT DIAGNOSES REPRESENTED

4966
03:09:06,007 --> 03:09:09,711
HERE. SO IT HAS GROWN A LOT.

4967
03:09:09,711 --> 03:09:12,180
THROUGH THE EFFORTS OF A LOT OF

4968
03:09:12,180 --> 03:09:13,514
FOLKS AT THE DIFFERENT

4969
03:09:13,514 --> 03:09:14,816
INSTITUTIONS THAT I MENTIONED

4970
03:09:14,816 --> 03:09:18,186
EARLIER. SO WHAT IS THE GOALS OF

4971
03:09:18,186 --> 03:09:21,356
THE PROJECT OVERALL? THIS IS

4972
03:09:21,356 --> 03:09:24,926
THINKING ABOUT NINDS PERSPECTIVE

4973
03:09:24,926 --> 03:09:25,927
ON THE GOALS AND WHY THEY WANT

4974
03:09:25,927 --> 03:09:27,562
TO DO IT, IT IS ABOUT

4975
03:09:27,562 --> 03:09:30,732
STREAMLINING AND HARMONIZING AND

4976
03:09:30,732 --> 03:09:32,266
IMPROVING THE EFFICIENCY WHICH

4977
03:09:32,266 --> 03:09:36,104
WE LEARN THINGS AND DO SCIENCE. 

4978
03:09:36,104 --> 03:09:37,372
IN THE UNITED STATES AND AT NIH

4979
03:09:37,372 --> 03:09:38,740
FUNDS. SO HARMONIZATION, THE

4980
03:09:38,740 --> 03:09:41,075
FIRST GOAL TALKS ABOUT THINKING

4981
03:09:41,075 --> 03:09:47,915
COMMON DEFINITIONS OF COMMON

4982
03:09:47,915 --> 03:09:49,250
LANGUAGE BEING CONSISTENT HOW

4983
03:09:49,250 --> 03:09:50,718
WITH E MEASURE THINGS AND ACROSS

4984
03:09:50,718 --> 03:09:52,420
CLINICAL SETTINGS. THIS ENHANCES

4985
03:09:52,420 --> 03:09:54,422
COLLABORATICOLLABORATION.  IF WE

4986
03:09:54,422 --> 03:09:55,723
SYSTEMATICALLY COLLECTING DATA

4987
03:09:55,723 --> 03:09:57,425
IN SIMILAR WAYS YOU CAN COMBINE

4988
03:09:57,425 --> 03:10:00,061
DATA SETS AND DO THINGS TO

4989
03:10:00,061 --> 03:10:02,096
IMPROVE THE POWER OF THE WORK WE

4990
03:10:02,096 --> 03:10:03,765
ARE DOING WITHOUT EFFORT IN

4991
03:10:03,765 --> 03:10:06,267
TERMS OF DATA COLLECTION SIDE OF

4992
03:10:06,267 --> 03:10:08,036
THINGS. IT IS MORE EFFICIENT. WE

4993
03:10:08,036 --> 03:10:10,571
CAN START A STUDY MUCH QUICKER

4994
03:10:10,571 --> 03:10:12,407
BECAUSE THERE IS ALREADY BEEN

4995
03:10:12,407 --> 03:10:13,741
CASE REPORT FORMS DEVELOPED,

4996
03:10:13,741 --> 03:10:15,843
THERE IS INFORMATION AVAILABLE

4997
03:10:15,843 --> 03:10:19,113
ABOUT WAYS IN WHICH TO EVALUATE

4998
03:10:19,113 --> 03:10:22,016
DIFFERENT CONSTRUCTS THAT ARE

4999
03:10:22,016 --> 03:10:25,186
CONSISTENT ACROSS STUDIES AND

5000
03:10:25,186 --> 03:10:26,287
DISEASE GROUPS, NOT JUST

5001
03:10:26,287 --> 03:10:27,422
CEREBRAL PALSY, SOMETHING YOU

5002
03:10:27,422 --> 03:10:32,560
ARE INTERESTED IN.  IN THE DATA

5003
03:10:32,560 --> 03:10:34,495
COLLECTION SIDE I REFERENCE CASE

5004
03:10:34,495 --> 03:10:36,330
REPORT FORMS. IF THE CERTAIN

5005
03:10:36,330 --> 03:10:37,198
CONTRACT IS REPRESENTED WITHIN

5006
03:10:37,198 --> 03:10:40,301
THE CDE PROJECT YOU CAN PULL

5007
03:10:40,301 --> 03:10:42,503
THAT WORD DOCUMENT OUT AND BEGIN

5008
03:10:42,503 --> 03:10:43,971
COLLECTING DATA AWAY, WHICH IS

5009
03:10:43,971 --> 03:10:46,841
NICE, ESPECIALLY FOR EARLY

5010
03:10:46,841 --> 03:10:49,410
FACULTY MEMBERS THAT ARE IN THAT

5011
03:10:49,410 --> 03:10:50,845
INITIAL PHASES OF TRYING TO GET

5012
03:10:50,845 --> 03:10:53,715
THE BALL ROLLING. BECAUSE THINGS

5013
03:10:53,715 --> 03:10:56,417
ARE COLLECTED IN A SIMILAR WAY

5014
03:10:56,417 --> 03:10:57,852
BECAUSE YOU DON'T HAVE TO THINK

5015
03:10:57,852 --> 03:11:01,055
ABOUT IT, WE ARE COLLECTING IN A

5016
03:11:01,055 --> 03:11:02,256
PARTICULAR FORMAT QUALITY AND

5017
03:11:02,256 --> 03:11:05,326
INTEGRITY OF THE DATA IS

5018
03:11:05,326 --> 03:11:06,861
IMPROVED, JUST BY STRUCTURE AND

5019
03:11:06,861 --> 03:11:08,129
INFRASTRUCTURE AND FRAMEWORK IN

5020
03:11:08,129 --> 03:11:11,999
PLACE IN WHICH TO DO THAT. SO

5021
03:11:11,999 --> 03:11:13,134
THAT IMPROVES DATA WE REFLECT

5022
03:11:13,134 --> 03:11:15,036
AND BURDEN OF HAVING TO GO BACK

5023
03:11:15,036 --> 03:11:16,637
AND CLEAN SOME OF THAT IN THE

5024
03:11:16,637 --> 03:11:20,641
WAYS THAT WE HAVE IN THE PAST.  

5025
03:11:20,641 --> 03:11:22,877
AS RELATES SPECIFICALLY TO

5026
03:11:22,877 --> 03:11:24,278
CEREBRAL PALSY COMMON DATA

5027
03:11:24,278 --> 03:11:28,649
ELEMENT SO THE PROJECT BEGAN IN

5028
03:11:28,649 --> 03:11:31,452
2015 WHERE AAC BEGAN LEADERSHIP

5029
03:11:31,452 --> 03:11:34,856
CREATED A STEERING COMMITTEE WHO

5030
03:11:34,856 --> 03:11:36,057
WORKED WITH RESEARCH COMMITTEE

5031
03:11:36,057 --> 03:11:38,126
OF THE AACM AND HOW TO APPROACH

5032
03:11:38,126 --> 03:11:39,861
THIS PROBLEM, THIS IS A REALLY

5033
03:11:39,861 --> 03:11:41,963
BIG UNDERTAKING AND WHAT WAS THE

5034
03:11:41,963 --> 03:11:44,332
BEST WAY TO GET COLLECTIVELY A

5035
03:11:44,332 --> 03:11:46,300
BUNCH OF EXPERTS IN CEREBRAL

5036
03:11:46,300 --> 03:11:47,468
PALSY TO START THINKING ABOUT

5037
03:11:47,468 --> 03:11:50,805
THIS PROCESS AND THIS PROBLEM.

5038
03:11:50,805 --> 03:11:52,640
SO WE DIVIDED THE WORK INTO A

5039
03:11:52,640 --> 03:11:53,908
COUPLE OF WORKING GROUPS AND

5040
03:11:53,908 --> 03:11:56,778
EACH OF THOSE WORKING GROUPS

5041
03:11:56,778 --> 03:11:59,147
COMPRISE BETWEEN 5 AND 7

5042
03:11:59,147 --> 03:12:02,016
INDIVIDUALS THAT HAD SPECIFIC

5043
03:12:02,016 --> 03:12:03,551
KNOWLEDGE AND EXPERIENCE DOMAIN

5044
03:12:03,551 --> 03:12:06,287
BEING COVERED.  IMPORTANTLY HERE

5045
03:12:06,287 --> 03:12:07,989
THIS INCLUDED A

5046
03:12:07,989 --> 03:12:10,191
MULTI-DISCIPLINARY TEAM, WE HAD

5047
03:12:10,191 --> 03:12:12,026
EPIDEMIOLOGISTS, CLINICIANS,

5048
03:12:12,026 --> 03:12:14,595
CLINICAL RESEARCHERS, EDUCATORS

5049
03:12:14,595 --> 03:12:16,464
AND CLINICAL TRIAL EXPERTS THAT

5050
03:12:16,464 --> 03:12:17,698
WERE ALL COLLABORATING TO BRING

5051
03:12:17,698 --> 03:12:19,567
THEIR OWN PERSPECTIVE TO THE

5052
03:12:19,567 --> 03:12:22,170
TABLE TO MAKE SURE THAT WHAT WE

5053
03:12:22,170 --> 03:12:26,107
WERE DOING RELEVANT TO THE

5054
03:12:26,107 --> 03:12:28,810
DIAGNOSIS AND RELEVANT TO

5055
03:12:28,810 --> 03:12:31,746
RESEARCH TO ADVANCE THE FRAMING

5056
03:12:31,746 --> 03:12:33,681
UTILIZED DURING THIS PROCESS FOR

5057
03:12:33,681 --> 03:12:37,685
THE FIRST VERSION OF CDE WAS THE

5058
03:12:37,685 --> 03:12:39,754
SELECTION CRITERIA WAS THE SAME

5059
03:12:39,754 --> 03:12:40,621
ACROSS GROUPS, FIRST IS THAT IT

5060
03:12:40,621 --> 03:12:42,757
WAS APPLICABLE TO CHILDREN AND

5061
03:12:42,757 --> 03:12:46,661
YOUNG PEOPLE 0 TO 18, BECAUSE IT

5062
03:12:46,661 --> 03:12:47,995
WAS FIRST ITERATION WE THOUGHT

5063
03:12:47,995 --> 03:12:50,665
IT WAS IMPORTANT TO NOT TRY TO

5064
03:12:50,665 --> 03:12:51,866
BITE TOO MUCH APPLE BUT KEEP

5065
03:12:51,866 --> 03:12:55,470
THINGS A LITTLE NARROWER TO

5066
03:12:55,470 --> 03:12:56,904
LOOKING AT PRE-ADULT YEARS

5067
03:12:56,904 --> 03:12:58,472
THOUGH THAT IS SOMETHING THAT

5068
03:12:58,472 --> 03:13:00,474
CAN CHANGE IN THE FUTURE AS WE

5069
03:13:00,474 --> 03:13:03,177
WILL TALK ABOUT LATER. THAT

5070
03:13:03,177 --> 03:13:04,879
REPRESENTED RELEVANT AREA OF

5071
03:13:04,879 --> 03:13:06,514
STUDY FOR CEREBRAL PALSY, IF IT

5072
03:13:06,514 --> 03:13:09,450
WAS RELATED TO THE KIND OF WORK

5073
03:13:09,450 --> 03:13:18,759
DONE TO ELEMENTS OF THE DATA

5074
03:13:18,759 --> 03:13:21,429
PROCESS, ANY DOCUMENTED VALIDITY

5075
03:13:21,429 --> 03:13:22,697
AND RELIABILITY SO WE WANTED TO

5076
03:13:22,697 --> 03:13:26,367
BE EVIDENCE FOCUSED IN TERMS OF

5077
03:13:26,367 --> 03:13:28,135
TOOLS, PROVEN USEFUL FOR THE

5078
03:13:28,135 --> 03:13:32,006
DIAGNOSIS IN THIS AGE RANGE. 

5079
03:13:32,006 --> 03:13:33,507
HERE IS SCHEMATIC FROM PAPER WE

5080
03:13:33,507 --> 03:13:35,576
PUB ESTABLISHED EXPLAINING A

5081
03:13:35,576 --> 03:13:37,111
RILLET BIT ABOUT THE PROCESS FOR

5082
03:13:37,111 --> 03:13:42,850
THIS FIRST SET OF CDEs SO THE

5083
03:13:42,850 --> 03:13:44,886
ITEM LISTED IN THESE SIX BUBBLES

5084
03:13:44,886 --> 03:13:46,387
ACROSS HERE REPRESENT THE TITLES

5085
03:13:46,387 --> 03:13:49,490
OF WORKING GROUPS AND THE FOCUS

5086
03:13:49,490 --> 03:13:51,526
OF EACH WORKING GROUPS. FOR

5087
03:13:51,526 --> 03:13:54,395
EXAMPLE WE HAD REGISTERS AROUND

5088
03:13:54,395 --> 03:13:56,364
THE WORLD CONTRIBUTING TO THIS

5089
03:13:56,364 --> 03:13:59,901
PARTICIPANT CHARACTERISTICS

5090
03:13:59,901 --> 03:14:01,602
SECTION. WHICH WENT TO DETAILS

5091
03:14:01,602 --> 03:14:03,571
HOW TO CLASSIFY THE DIAGNOSIS

5092
03:14:03,571 --> 03:14:05,840
HOW DO WE UNDERSTAND MORE ABOUT

5093
03:14:05,840 --> 03:14:11,045
THE FAMILY STRUCTURE, GEOGRAPHIC

5094
03:14:11,045 --> 03:14:12,246
LOCATION OF INDIVIDUALS PART OF

5095
03:14:12,246 --> 03:14:15,583
THE RESEARCH STUDIES FROM DATA

5096
03:14:15,583 --> 03:14:17,051
ELEMENTS PERSPECTIVE. WE HAD A

5097
03:14:17,051 --> 03:14:20,221
GROUP THAT FOCUSED ON HEALTH,

5098
03:14:20,221 --> 03:14:23,291
GROWTH, GENETICS, CO-MORBIDITIES

5099
03:14:23,291 --> 03:14:26,360
AND LAB VALUES, A NUMBER OF

5100
03:14:26,360 --> 03:14:28,229
MDs A GROUP LOOKING AT

5101
03:14:28,229 --> 03:14:30,097
NEUROIMAGING DIAGNOSTICS,

5102
03:14:30,097 --> 03:14:32,099
ANOTHER TOOK A ON A HEAVY LIFT

5103
03:14:32,099 --> 03:14:34,101
AT NEURAL MOTOR SKILLS AND

5104
03:14:34,101 --> 03:14:36,871
FUNCTIONAL ASSESSMENT WHICH

5105
03:14:36,871 --> 03:14:39,674
THERE ARE MANY. NEUROCOGNITIVE

5106
03:14:39,674 --> 03:14:42,510
SOCIAL EMOTIONAL ASSESSMENTS

5107
03:14:42,510 --> 03:14:44,478
GROUP. ENGAGEMENT AND QUALITY OF

5108
03:14:44,478 --> 03:14:46,881
LIFE ASSESSMENTS GROUP. SO THE

5109
03:14:46,881 --> 03:14:48,849
PROCESS EACH OF THESE GROUPS

5110
03:14:48,849 --> 03:14:50,918
TOOK ON WAS INTERESTINGLY A A

5111
03:14:50,918 --> 03:14:51,852
LITTLE BIT DIFFERENT THEY

5112
03:14:51,852 --> 03:14:52,954
APPROACH THE QUESTION FROM A

5113
03:14:52,954 --> 03:14:56,157
DIFFERENT POINT OF VIEW. THE

5114
03:14:56,157 --> 03:14:57,758
CONSISTENCY WAS CRITERIA APPLIED

5115
03:14:57,758 --> 03:15:00,528
TO EVERY DATA ELEMENT OR TOOL,

5116
03:15:00,528 --> 03:15:05,433
THAT WAS EVALUATED. AND THE FACT

5117
03:15:05,433 --> 03:15:06,801
THEY ARE REFERENCING BACK TO

5118
03:15:06,801 --> 03:15:09,070
DATA ELEMENTS ALREADY IN

5119
03:15:09,070 --> 03:15:11,505
EXISTENCE. SOME GROUPS STARTED

5120
03:15:11,505 --> 03:15:13,040
THERE AND SAID WE WILL LOOK AT

5121
03:15:13,040 --> 03:15:16,077
DATA ELEMENTS THAT EXIST, AND

5122
03:15:16,077 --> 03:15:17,745
CATEGORIZE BETWEEN ONES RELEVANT

5123
03:15:17,745 --> 03:15:21,082
AND NOT RELEVANT THEN LOOK FOR

5124
03:15:21,082 --> 03:15:22,416
GAPS. AND OURS APPROACH FROM

5125
03:15:22,416 --> 03:15:24,018
OPPOSITE VIEWPOINT, WHAT IS

5126
03:15:24,018 --> 03:15:25,553
IMPORTANT AND ALREADY COVERED SO

5127
03:15:25,553 --> 03:15:27,655
THERE WAS VARIABILITY THERE

5128
03:15:27,655 --> 03:15:31,158
BASED ON PREFERENCES AND WORKING

5129
03:15:31,158 --> 03:15:35,496
STYLES OF DIFFERENT GROUPS. 

5130
03:15:35,496 --> 03:15:37,031
THESE WORKING GROUPS WERE

5131
03:15:37,031 --> 03:15:38,299
OVERSEEN BY GROUP THAT THOUGHT

5132
03:15:38,299 --> 03:15:40,668
ABOUT THE INTEGRATIVE APPROACH

5133
03:15:40,668 --> 03:15:41,402
THAT NONE OF OF THEM WERE

5134
03:15:41,402 --> 03:15:45,006
WORKING IN SILOS BUT HAD

5135
03:15:45,006 --> 03:15:46,841
OPPORTUNITIES TO CROSS POLLINATE

5136
03:15:46,841 --> 03:15:49,577
AND THINK ABOUT GAPS MISSING.  

5137
03:15:49,577 --> 03:15:52,813
WE CONSOLIDATED ALL THIS ACROSS

5138
03:15:52,813 --> 03:15:54,949
WORKING GROUPS AND MADE INITIAL

5139
03:15:54,949 --> 03:15:56,851
PROPOSAL THEN THERE WAS INTERNAL

5140
03:15:56,851 --> 03:15:59,153
REVIEW PERIOD AS WELL AS PUBLIC

5141
03:15:59,153 --> 03:16:00,654
FEEDBACK PERIOD. WE WILL TALK

5142
03:16:00,654 --> 03:16:02,723
ABOUT THAT PUBLIC FEEDBACK

5143
03:16:02,723 --> 03:16:04,392
PORTION IN A BIT,NA IS A

5144
03:16:04,392 --> 03:16:07,128
CRITICAL COMPONENT OF THIS WHOLE

5145
03:16:07,128 --> 03:16:09,597
PROCESS, THESE ARE NOT CREATED

5146
03:16:09,597 --> 03:16:12,767
IN ISOLATION NOSH NOR STATIC.

5147
03:16:12,767 --> 03:16:14,602
THE COMMON DATA ELEMENTS ARE A

5148
03:16:14,602 --> 03:16:15,936
LIVING DOCUMENT, THEY SHOULD BE

5149
03:16:15,936 --> 03:16:18,105
CHANGING BASED ON THE INPUT FROM

5150
03:16:18,105 --> 03:16:20,508
DIFFERENT STAKEHOLDERS.  FROM

5151
03:16:20,508 --> 03:16:22,176
THE COMMUNITY BOTH SCIENTIFIC

5152
03:16:22,176 --> 03:16:23,511
COMMUNITY AS WELL AS COMMUNITY

5153
03:16:23,511 --> 03:16:26,047
OF INDIVIDUALS AND FAMILIES WHO

5154
03:16:26,047 --> 03:16:28,616
ARE AFFECTED BY CEREBRAL PALSY.

5155
03:16:28,616 --> 03:16:29,784
ANOTHER IMPORTANT THING TO POINT

5156
03:16:29,784 --> 03:16:32,453
OUT IS THE BAR ACROSS THE SIDE

5157
03:16:32,453 --> 03:16:33,654
THAT WE WERE ALSO GUIDED BY

5158
03:16:33,654 --> 03:16:36,157
INTERNATIONAL CLASSIFICATION

5159
03:16:36,157 --> 03:16:38,125
FUNCTION THINKING HOLISTICALLY

5160
03:16:38,125 --> 03:16:39,860
ABOUT THE POPULATION AND TYPES

5161
03:16:39,860 --> 03:16:42,129
OF STUDIES THAT UTILIZE THIS

5162
03:16:42,129 --> 03:16:46,700
PROJECT. SO WHY WOULD ANYBODY

5163
03:16:46,700 --> 03:16:49,870
USE THESE? WHAT IS THE PURPOSE,

5164
03:16:49,870 --> 03:16:53,541
WHAT IS THE UTILITY OF THIS

5165
03:16:53,541 --> 03:16:55,309
PROJECT OF WHICH NO DENYING TON

5166
03:16:55,309 --> 03:16:57,311
OF WORK THAT'S GONE INTO IT BUT

5167
03:16:57,311 --> 03:17:02,149
HOW DOES THAT MINIMIZE WORK AS

5168
03:17:02,149 --> 03:17:03,551
CLINICIAN OR RESEARCHER. THE

5169
03:17:03,551 --> 03:17:06,220
REASON TO PROPOSE OR THINK ABOUT

5170
03:17:06,220 --> 03:17:07,588
WHY YOU MIGHT USE THEM IS

5171
03:17:07,588 --> 03:17:10,725
BECAUSE IT SAVES YOU TIME. HERE

5172
03:17:10,725 --> 03:17:13,127
IS A ONE STOP SHOP REPOSITORY OF

5173
03:17:13,127 --> 03:17:16,397
VALIDATED INSTRUMENTS FOR THIS

5174
03:17:16,397 --> 03:17:18,032
DIAGNOSIS GROUP. AS MENTIONED

5175
03:17:18,032 --> 03:17:19,233
BEFORE IN SOME CASES THE CASE

5176
03:17:19,233 --> 03:17:21,001
REPORT FORM IS THAT YOU MIGHT

5177
03:17:21,001 --> 03:17:24,038
USE FOR YOUR STUDY ARE READILY

5178
03:17:24,038 --> 03:17:26,407
AVAILABLE OR FOR YOUR CLINICAL

5179
03:17:26,407 --> 03:17:27,508
PRACTICE.  MAKE BE DEPARTMENT

5180
03:17:27,508 --> 03:17:30,111
AND ADOPTED, BY YOUR STUDY IN A

5181
03:17:30,111 --> 03:17:32,813
SHORT PERIOD OF TIME, ALL CASE

5182
03:17:32,813 --> 03:17:34,281
REPORT FORMINGS ARE DOWNLOADABLE

5183
03:17:34,281 --> 03:17:37,151
WORD DOCUMENTS, THAT CAN BE

5184
03:17:37,151 --> 03:17:38,252
ADDED TO IF THERE IS ELEMENTS

5185
03:17:38,252 --> 03:17:41,989
THAT ARE NOT YOUR STUDY FINDS

5186
03:17:41,989 --> 03:17:43,023
IMPORTANT NOT NECESSARILY

5187
03:17:43,023 --> 03:17:45,192
REFLECTED AS A COMMON DATA

5188
03:17:45,192 --> 03:17:47,728
ELEMENT. THOSE CAN BE ADDED IN.

5189
03:17:47,728 --> 03:17:50,397
IF THERE IS ELEMENTS REDUNDANT

5190
03:17:50,397 --> 03:17:52,800
THAT HAVE NOT BE OR ARE NOT CORE

5191
03:17:52,800 --> 03:17:54,068
ELEMENTS YOU CAN REMOVE THEM,

5192
03:17:54,068 --> 03:17:55,903
YOU DON'T HAVE TO COLLECT DATA

5193
03:17:55,903 --> 03:17:58,405
YOU DON'T NEED FOR YOUR STUDY.

5194
03:17:58,405 --> 03:17:59,974
THE IDEA IS ANY DATA YOU COLLECT

5195
03:17:59,974 --> 03:18:01,709
IS COLLECTED IN MANY A WAY THAT

5196
03:18:01,709 --> 03:18:02,943
IS CONSISTENT WITH OTHERS IN THE

5197
03:18:02,943 --> 03:18:08,449
AREA. ONE THING I DISCOVERED

5198
03:18:08,449 --> 03:18:10,851
RECENTLY THAT I FEEL HAS THE

5199
03:18:10,851 --> 03:18:12,119
POTENTIAL TO IMPROVE MY ABILITY

5200
03:18:12,119 --> 03:18:16,557
TO GET STARTED QUICKLY AND

5201
03:18:16,557 --> 03:18:17,458
STREAMLINE THE DATA COLLECTION

5202
03:18:17,458 --> 03:18:21,228
PROCESS IS THE DATA DICTIONARIES

5203
03:18:21,228 --> 03:18:23,197
THAT ARE AVAILABLE WITHIN THE

5204
03:18:23,197 --> 03:18:24,732
COMMON DATA ELEMENTS WEBSITE CAN

5205
03:18:24,732 --> 03:18:26,567
BE DOWNLOADED AND IMPORTED

5206
03:18:26,567 --> 03:18:28,802
DIRECTLY TO TOOLS SUCH AS RED

5207
03:18:28,802 --> 03:18:32,206
CAP THAT CAN FACILITATE YOUR

5208
03:18:32,206 --> 03:18:33,941
ELECTRONIC DATA CAPTURE IN A WAY

5209
03:18:33,941 --> 03:18:39,180
THAT CAN STREAMLINE THE PROCESS

5210
03:18:39,180 --> 03:18:40,648
AND DATA QUALITY BECAUSE HOW IT

5211
03:18:40,648 --> 03:18:41,682
IS COLLECT SOD THAT IS AN

5212
03:18:41,682 --> 03:18:44,685
EXAMPLE OF AN EXCITING WAY IN H

5213
03:18:44,685 --> 03:18:46,987
WHICH THIS PROJECT AND THE

5214
03:18:46,987 --> 03:18:53,861
RESOURCES THAT ARE AVAILABLE

5215
03:18:53,861 --> 03:18:56,163
FACILITATE QUICK ACCURATE DATA

5216
03:18:56,163 --> 03:18:58,566
COLLECTION FOR CEREBRAL PALSY.  

5217
03:18:58,566 --> 03:19:02,036
I MENTIONED CORE ELEMENTS IN THE

5218
03:19:02,036 --> 03:19:04,838
LAST SLIDE AND I WANT TO REVIEW

5219
03:19:04,838 --> 03:19:05,506
WHAT THE DIFFERENT

5220
03:19:05,506 --> 03:19:06,740
CLASSIFICATIONS ARE. FOR EVERY

5221
03:19:06,740 --> 03:19:09,777
TOOL AND DATA ELEMENT, THE

5222
03:19:09,777 --> 03:19:12,112
WORKING GROUPS, AND/OR OVER SITE

5223
03:19:12,112 --> 03:19:15,716
STEERING COMMITTEE LOOK TO

5224
03:19:15,716 --> 03:19:16,750
DETERMINE HOW CONFIDENT WE ARE

5225
03:19:16,750 --> 03:19:18,485
IN THESE AREAS AND HOW IMPORTANT

5226
03:19:18,485 --> 03:19:21,055
ARE THEY ESSENTIALLY SO

5227
03:19:21,055 --> 03:19:22,890
SOMETHING THAT ARE SUPER

5228
03:19:22,890 --> 03:19:24,124
CONFIDENT AND CORE ACROSS THE

5229
03:19:24,124 --> 03:19:27,027
ENTIRETY OF THE NIH OR NINDS

5230
03:19:27,027 --> 03:19:30,297
SOMETHING THAT IS A GENERAL CORE

5231
03:19:30,297 --> 03:19:30,965
VARIABLE, EVERYBODY REGARDING

5232
03:19:30,965 --> 03:19:32,233
WHAT YOU STUDY, THIS IS AN

5233
03:19:32,233 --> 03:19:33,234
IMPORTANT DATA ELEMENT THAT

5234
03:19:33,234 --> 03:19:36,036
SHOULD BE INK COLLUDED.  

5235
03:19:36,036 --> 03:19:37,438
ENCOMPASSED WITHIN THAT ARE

5236
03:19:37,438 --> 03:19:41,342
BIGGER THAN THAT WOULD BE ANY

5237
03:19:41,342 --> 03:19:41,976
ELEMENTSNA ARE DISEASE CORE

5238
03:19:41,976 --> 03:19:43,344
SPECIFIC SO ANYTHING FROM

5239
03:19:43,344 --> 03:19:45,613
CEREBRAL PALSY THAT IS -- THAT

5240
03:19:45,613 --> 03:19:48,315
SHOULD CONSISTENTLY BE RECORDED

5241
03:19:48,315 --> 03:19:50,150
REGARDLESS OF WHAT TYPE OF STUDY

5242
03:19:50,150 --> 03:19:53,020
YOU ARE DOING.  SO THERE IS VERY

5243
03:19:53,020 --> 03:19:56,857
FEW OF THESE ACTUALLY THAT ARE

5244
03:19:56,857 --> 03:19:57,925
INCLUDED WITHIN CP FROM

5245
03:19:57,925 --> 03:20:00,694
APOLOGETIC. THERE IS MORE

5246
03:20:00,694 --> 03:20:01,729
FLEXIBLIBILITY FOR CLINICIANS

5247
03:20:01,729 --> 03:20:02,930
AND RESEARCHERS BECAUSE THERE'S

5248
03:20:02,930 --> 03:20:04,665
NOT A LOT OF THINGS THAT ARE

5249
03:20:04,665 --> 03:20:09,904
CORE. THAT IS REFLECTED IN THE

5250
03:20:09,904 --> 03:20:11,805
HETEROGENEITY OF THE DISORDER

5251
03:20:11,805 --> 03:20:13,274
THERE IS NOT MANY THINGS

5252
03:20:13,274 --> 03:20:15,009
CONSISTENT AND CRIT CAN BELIEVE

5253
03:20:15,009 --> 03:20:16,477
AEVERY INDIVIDUAL AT ALL AGES

5254
03:20:16,477 --> 03:20:18,612
MENTIONED. WE DO HOWEVER HAVE A

5255
03:20:18,612 --> 03:20:20,881
NUMBER OF ITEMS SUPPLEMENTAL IE

5256
03:20:20,881 --> 03:20:22,917
NOT REQUIRED BUT WE HIGHLY

5257
03:20:22,917 --> 03:20:24,685
RECOMMEND THEM. THEY REALLY GIVE

5258
03:20:24,685 --> 03:20:27,788
US SOME GOOD INFORMATION ABOUT

5259
03:20:27,788 --> 03:20:30,791
THE COHORT OF INDIVIDUALS PART

5260
03:20:30,791 --> 03:20:32,493
OF STUDY OR PARTICIPATING IN

5261
03:20:32,493 --> 03:20:33,761
INTERVENTION TO UNDERSTAND WHERE

5262
03:20:33,761 --> 03:20:35,095
THEY ARE SITUATED WITHIN THE

5263
03:20:35,095 --> 03:20:38,832
ENTIRE POPULATION OF CEREBRAL

5264
03:20:38,832 --> 03:20:41,268
PALSY. THERE IS ADDITIONAL

5265
03:20:41,268 --> 03:20:43,671
SUPPLEMENTAL WHICH IS A LARGE

5266
03:20:43,671 --> 03:20:45,673
NUMBER OF ELEMENTS AND TOOLS

5267
03:20:45,673 --> 03:20:47,875
THAT ARE RECOMMENDED IN THIS

5268
03:20:47,875 --> 03:20:48,642
PROJECT GENERAL AND THAT

5269
03:20:48,642 --> 03:20:55,316
ESSENTIALLY MEANS THEY ARE GOOD

5270
03:20:55,316 --> 03:20:56,450
THESE ARE GOOD CHOICES TO USE

5271
03:20:56,450 --> 03:20:58,719
FOR THAT. BUT THEY ARE NOT

5272
03:20:58,719 --> 03:21:00,421
REQUIRE AND IF YOUR STUDY IS NOT

5273
03:21:00,421 --> 03:21:01,488
INTERESTED IN MEASURING THAT,

5274
03:21:01,488 --> 03:21:02,790
YOU DON'T NEED TO INCLUDE THOSE

5275
03:21:02,790 --> 03:21:11,932
ELEMENTS.  WE HAVE ASSESSMENTS

5276
03:21:11,932 --> 03:21:15,069
THAT HAVE POTENTIAL REASON TO

5277
03:21:15,069 --> 03:21:17,471
BELIEVE IMPORTANT DOMAIN TO LOOK

5278
03:21:17,471 --> 03:21:21,642
AT OR WELL VALIDATED IN OTHER

5279
03:21:21,642 --> 03:21:24,211
GROUPS BUT WE DON'T HAVE THE

5280
03:21:24,211 --> 03:21:25,245
DATA YET FOR CEREBRAL PALSY.

5281
03:21:25,245 --> 03:21:27,848
THERE IS AREA OF OPPORTUNITY TO

5282
03:21:27,848 --> 03:21:30,884
WANT TO UNDERSTAND IS IT A VALID

5283
03:21:30,884 --> 03:21:32,386
MEASURE, RELIABLE, GOOD

5284
03:21:32,386 --> 03:21:37,091
REPEATABILITY, THOSE SORTS OF

5285
03:21:37,091 --> 03:21:39,860
QUESTIONS, BUT NOT THERE YET, WE

5286
03:21:39,860 --> 03:21:43,097
INCLUDED THOSE BECAUSE THEY HAVE

5287
03:21:43,097 --> 03:21:45,799
POTENTIAL BUT LESSER CONFIDENCE

5288
03:21:45,799 --> 03:21:48,669
IN QUALITY AT THIS POINT. SO

5289
03:21:48,669 --> 03:21:51,505
WHEN YOU LOOK AT THE TOOLS

5290
03:21:51,505 --> 03:21:53,841
ESPECIALLY, THERE ARE COUPLE OF

5291
03:21:53,841 --> 03:21:55,876
-- THERE IS ONE PARTICULAR FORM

5292
03:21:55,876 --> 03:21:57,611
QUITE USEFUL. AND IT RELATES A

5293
03:21:57,611 --> 03:21:59,947
LITTLE BIT TO SOME OF THE

5294
03:21:59,947 --> 03:22:00,981
CLASSIFICATIONS WE JUST TALKED

5295
03:22:00,981 --> 03:22:06,854
ABOUT. SO THAT THE NOTICE OF

5296
03:22:06,854 --> 03:22:08,822
COPYRIGHT FORMS YOU FIND LINKS

5297
03:22:08,822 --> 03:22:11,992
IN TOOLS OR OUTCOME MEASURES

5298
03:22:11,992 --> 03:22:17,765
WITHIN THE CBE PROJECT. THESE

5299
03:22:17,765 --> 03:22:21,335
FORMS ARE GOLDMINES OF

5300
03:22:21,335 --> 03:22:24,004
INFORMATION PARTICULARLY ABOUT

5301
03:22:24,004 --> 03:22:25,906
DOMAIN YOU WANT TO LOOK AT BUT

5302
03:22:25,906 --> 03:22:30,144
NOT BACKGROUND RONES IF A CLIFF

5303
03:22:30,144 --> 03:22:34,815
NOTES VERSION OF HOW THIS TOOL

5304
03:22:34,815 --> 03:22:36,683
IS RELEVANT. YOU CAN ASSESS IS

5305
03:22:36,683 --> 03:22:37,718
THIS SOMETHING THAT COULD BE

5306
03:22:37,718 --> 03:22:39,153
INTERESTING USEFUL TO ME AND

5307
03:22:39,153 --> 03:22:42,856
LEARN MORE PERHAPS OR THIS IS

5308
03:22:42,856 --> 03:22:43,824
NOT WHAT I THOUGHT IT WAS AND

5309
03:22:43,824 --> 03:22:46,860
NOT THE RIGHT TOOL.  SO THINGS

5310
03:22:46,860 --> 03:22:49,029
ON NOTICE OF COPYRIGHT FORMS

5311
03:22:49,029 --> 03:22:52,499
THOUGH NOT ALL NOTICE ARE

5312
03:22:52,499 --> 03:22:54,034
COPYRIGHTED INSTRUMENTS, THAT IS

5313
03:22:54,034 --> 03:22:55,169
AN IMPORTANT POINT TO MAKE. BUT

5314
03:22:55,169 --> 03:22:56,670
YOU CAN FIND ON THAT FORM FOR

5315
03:22:56,670 --> 03:22:57,905
ALL OF THEM, WHERE IS IT

5316
03:22:57,905 --> 03:22:59,973
AVAILABLE. IS IT PUBLICLY

5317
03:22:59,973 --> 03:23:00,741
ACCESSIBLE, DO YOU HAVE TO PAY

5318
03:23:00,741 --> 03:23:04,745
FOR IT? WHAT CLASSIFICATION? IS

5319
03:23:04,745 --> 03:23:06,346
THIS A CORE ELEMENT,

5320
03:23:06,346 --> 03:23:08,649
EXPLORATORY, HIGHLY RECOMMENDED?

5321
03:23:08,649 --> 03:23:11,318
FOR EXAMPLE, DESCRIPTION OF THE

5322
03:23:11,318 --> 03:23:13,120
TOOL. SO BASIC INFORMATION ABOUT

5323
03:23:13,120 --> 03:23:14,555
WHAT IS IT MEASURE, HOW LONG

5324
03:23:14,555 --> 03:23:18,926
DOES IT TAKE, THOSE TYPES OF

5325
03:23:18,926 --> 03:23:21,528
THING, WHO IS IT FOR? ANY

5326
03:23:21,528 --> 03:23:22,496
PARTICULARLY SPECIAL

5327
03:23:22,496 --> 03:23:24,998
INSTRUCTIONS OR OTHER IMPORTANT

5328
03:23:24,998 --> 03:23:27,734
INFORMATION SOMEONE NEEDS TO

5329
03:23:27,734 --> 03:23:28,936
CONSIDER, WHAT MIGHT BE INCLUDED

5330
03:23:28,936 --> 03:23:30,971
IN HERE IS WHAT ICF DOMAIN DOES

5331
03:23:30,971 --> 03:23:34,775
IT COVER. IN CLASSIFICATION.

5332
03:23:34,775 --> 03:23:37,511
THERE IS A SECTION ABOUT PSYCHO

5333
03:23:37,511 --> 03:23:39,179
METRIC PROPERTIES THAT REPORT

5334
03:23:39,179 --> 03:23:40,247
VALIDITY OR RELIABILITY

5335
03:23:40,247 --> 03:23:41,915
DOCUMENTED IN THE LITERATURE.

5336
03:23:41,915 --> 03:23:44,184
THERE IS A JUSTIFICATION FOR

5337
03:23:44,184 --> 03:23:47,421
INCLUSION IN THE CP CDE SO THAT

5338
03:23:47,421 --> 03:23:48,856
IS NICE INSIGHT TO WHAT THE

5339
03:23:48,856 --> 03:23:51,592
WORKING GROUP OR COMMITTEE WAS

5340
03:23:51,592 --> 03:23:54,261
THINKING. AND FINALLY A NICE

5341
03:23:54,261 --> 03:23:56,663
RESOURCE IS SOME PRIMARY

5342
03:23:56,663 --> 03:23:58,065
REFERENCES. PRIMARY REFERENCES

5343
03:23:58,065 --> 03:24:00,134
FROM WHAT A TOOL WAS FIRST

5344
03:24:00,134 --> 03:24:01,969
DEVELOPED, WHEN VALIDATED IN

5345
03:24:01,969 --> 03:24:03,537
CEREBRAL PALSY, SOMETIMES BOTH

5346
03:24:03,537 --> 03:24:04,438
AND SOMETIMES HIGH QUALITY

5347
03:24:04,438 --> 03:24:05,973
STUDIES THAT UTILIZE THEM OR

5348
03:24:05,973 --> 03:24:07,508
SYSTEMATIC REVIEWS THAT MENTION

5349
03:24:07,508 --> 03:24:09,676
THEM. SO THESE NOTICE OF

5350
03:24:09,676 --> 03:24:11,545
COPYRIGHT FORMS ARE REALLY

5351
03:24:11,545 --> 03:24:13,313
BENEFICIAL AND USEFUL AS YOU ARE

5352
03:24:13,313 --> 03:24:17,251
GETTING TO LEARN A BUILT MORE

5353
03:24:17,251 --> 03:24:21,154
ABOUT MUTUALS. SO I MENTION WE

5354
03:24:21,154 --> 03:24:23,957
INCLUDE AD RELEASE AND PUBLIC

5355
03:24:23,957 --> 03:24:25,726
FEEDBACK ABOUT VERSION 1.0 OF

5356
03:24:25,726 --> 03:24:29,062
THE CPCDE AND THIS IS A LIVING

5357
03:24:29,062 --> 03:24:32,833
AND BREATHING AND CONSTANTLY

5358
03:24:32,833 --> 03:24:33,700
EVOLVING PROJECT SO THAT ONE IS

5359
03:24:33,700 --> 03:24:37,037
JUST A STARTING POINT. WE EXPECT

5360
03:24:37,037 --> 03:24:38,672
ELEMENTS ARE GOING TO EVOLVE

5361
03:24:38,672 --> 03:24:42,709
OVER TIME AS WE LEARN MORE AND

5362
03:24:42,709 --> 03:24:44,144
AS TOOLS BECOME NEWLY AVAILABLE

5363
03:24:44,144 --> 03:24:50,484
FOR DIFFERENT DOMAINS.  AS A

5364
03:24:50,484 --> 03:24:51,218
RESULT OF THIS PUBLIC COMMENT

5365
03:24:51,218 --> 03:24:56,557
PHASE WE UNDERSTAND GAPS. SOME

5366
03:24:56,557 --> 03:24:58,058
THAT NEEDED TO BE FILLED

5367
03:24:58,058 --> 03:24:59,059
URGENTLY SO SURGICAL

5368
03:24:59,059 --> 03:25:03,864
INTERVENTIONS AND SURGICAL

5369
03:25:03,864 --> 03:25:06,133
OUTCOMES ASK AN AREA WITHOUT

5370
03:25:06,133 --> 03:25:09,269
REPRESENTATION IN VERSION 1.0 SO

5371
03:25:09,269 --> 03:25:10,270
INTERDISCIPLINARY SURGICAL

5372
03:25:10,270 --> 03:25:12,239
WORKING GROUP CREATED AFTER THAT

5373
03:25:12,239 --> 03:25:13,140
FEEDBACK PORTION AND THEY HAVE

5374
03:25:13,140 --> 03:25:19,146
BEEN WORKING ON SURGICAL CDEs. 

5375
03:25:19,146 --> 03:25:20,380
IN ADDITION IT WAS NOTED SOME

5376
03:25:20,380 --> 03:25:23,150
AREAS OF THE ICF THAT WERE NOT

5377
03:25:23,150 --> 03:25:27,588
ADEQUATELY REPRESENTED.  

5378
03:25:27,588 --> 03:25:28,188
SPECIFICALLY CHRONIC PAIN AN

5379
03:25:28,188 --> 03:25:29,823
SLEEP DISTURBANCES RELATE TO DAY

5380
03:25:29,823 --> 03:25:31,992
TO DAY FUNCTION WAS AN AREA

5381
03:25:31,992 --> 03:25:34,328
OVERALL NOTED SO PAIN WORKING

5382
03:25:34,328 --> 03:25:38,498
GROUP WAS ALSO FORMED IN

5383
03:25:38,498 --> 03:25:41,268
RESPONSE TO THESE GAPS NOTED

5384
03:25:41,268 --> 03:25:48,275
AFTER INITIAL VERSION. AFTER THE

5385
03:25:48,275 --> 03:25:49,910
INITIAL 1.0 VERSION CDE WAS

5386
03:25:49,910 --> 03:25:51,111
RELEASED THE WORKING GROUP

5387
03:25:51,111 --> 03:25:52,679
DISSOLVED IN AN OVERSIGHT ANY

5388
03:25:52,679 --> 03:25:55,682
WAS FORMED SO THIS IS A GROUP OF

5389
03:25:55,682 --> 03:26:01,154
DEDICATED INDIVIDUALS LED BY DR.

5390
03:26:01,154 --> 03:26:01,688
BRANDONBURG, CHAIR OF THE

5391
03:26:01,688 --> 03:26:03,056
COMMITTEE TO CARRY THE PROJECT

5392
03:26:03,056 --> 03:26:04,291
FORWARD AND THERE IS A NUMBER OF

5393
03:26:04,291 --> 03:26:05,525
PEOPLE ON THIS COMMITTEE AND

5394
03:26:05,525 --> 03:26:08,061
ROTATED OFF, THIS REPRESENTS THE

5395
03:26:08,061 --> 03:26:11,031
CURRENT OVERSIGHT COMMITTEE IT

5396
03:26:11,031 --> 03:26:12,099
IS A COMBINATION OF INDIVIDUALS

5397
03:26:12,099 --> 03:26:13,433
FROM THE ORIGINAL WORKING GROUPS

5398
03:26:13,433 --> 03:26:18,238
IN MOST CASES, WHO HAVE

5399
03:26:18,238 --> 03:26:19,439
KNOWLEDGE OF HISTORY AND PROCESS

5400
03:26:19,439 --> 03:26:20,741
IN PLACE BEFORE AND REPRESENT

5401
03:26:20,741 --> 03:26:25,445
DIFFERENT AREAS OF SPECIALTY,

5402
03:26:25,445 --> 03:26:27,214
AND IMMUNITY IN COLLABORATION

5403
03:26:27,214 --> 03:26:28,815
WITH REPRESENTATIVES FROM NINDS

5404
03:26:28,815 --> 03:26:31,852
AS WELL AS ENNIS, A CORPORATION

5405
03:26:31,852 --> 03:26:33,453
CONTRACTOR THAT HELPS US WITH

5406
03:26:33,453 --> 03:26:35,589
ALL THE ORGANIZATIONS BEHIND THE

5407
03:26:35,589 --> 03:26:37,057
SCENES PIECES. SO THEY DO

5408
03:26:37,057 --> 03:26:39,493
WONDERFUL WORK IN TERMS OF

5409
03:26:39,493 --> 03:26:42,696
KEEPING ALL THE DATA STRAIGHT,

5410
03:26:42,696 --> 03:26:44,197
PEOPLE THE HOE KEEPING STANDARDS

5411
03:26:44,197 --> 03:26:45,465
STRAIGHT AND PUSHING THEM OUT TO

5412
03:26:45,465 --> 03:26:46,767
THE WEBSITE FOR ALL OF OUR

5413
03:26:46,767 --> 03:26:52,606
USAGE. THIS SHAH THE TEAM MOVING

5414
03:26:52,606 --> 03:26:55,042
OUR PROJECT FORWARD AND STEWARDS

5415
03:26:55,042 --> 03:27:01,915
OF COMMON DATA ELEMENTS PROJECT 

5416
03:27:01,915 --> 03:27:04,051
WITH NOD TO FUTURE MODIFICATIONS

5417
03:27:04,051 --> 03:27:06,687
I REFERENCE GROUPS WORKING HERE,

5418
03:27:06,687 --> 03:27:08,388
SINCE THE VERSION 1.0 THERE WAS

5419
03:27:08,388 --> 03:27:11,525
ALSO AN ASSISTIVE DEVICES CRF

5420
03:27:11,525 --> 03:27:13,560
PUT OUT. AND VERY SOON IN

5421
03:27:13,560 --> 03:27:16,463
SEPTEMBER OF 2022 WE WILL BE

5422
03:27:16,463 --> 03:27:18,165
LAUNCHING THE NEW PAIN

5423
03:27:18,165 --> 03:27:19,866
INSTRUMENTS AND ORTHOPEDIC

5424
03:27:19,866 --> 03:27:22,869
SURGICAL CDE SO IN SEPTEMBER

5425
03:27:22,869 --> 03:27:24,705
THOSE RELEASE FINAL VERSION,

5426
03:27:24,705 --> 03:27:26,139
DATES HAVE BEEN THROUGH A PUBLIC

5427
03:27:26,139 --> 03:27:30,277
RESPONSE PERIOD. SO WE HAD A

5428
03:27:30,277 --> 03:27:32,012
CHANCE TO PUBLISH AND GET

5429
03:27:32,012 --> 03:27:34,314
FEEDBACK FROM FOLKS IN THE

5430
03:27:34,314 --> 03:27:35,816
COMMUNITY THAT HAD PERSPECTIVES

5431
03:27:35,816 --> 03:27:37,384
ON HOW WE APPROACH CERTAIN

5432
03:27:37,384 --> 03:27:42,823
THINGS AND AN OPPORTUNITY FOR

5433
03:27:42,823 --> 03:27:44,958
DIALOGUE AND MAKE MODIFICATIONS

5434
03:27:44,958 --> 03:27:46,159
TO ENCOURAGE FEEDBACK SO WHEN

5435
03:27:46,159 --> 03:27:48,962
YOU SEE ANNOUNCEMENTS AND TRY TO

5436
03:27:48,962 --> 03:27:50,664
CAST A WIDE NET TO LOOK WHAT IS

5437
03:27:50,664 --> 03:27:53,266
CHANGING IN THE CDE BECAUSE WE

5438
03:27:53,266 --> 03:27:55,569
DO CARE ABOUT AND TAKE INTO

5439
03:27:55,569 --> 03:27:57,270
CONSIDERATION THE FEEDBACK OF

5440
03:27:57,270 --> 03:28:01,274
THOSE TAKE THE TIME TO LOOK.

5441
03:28:01,274 --> 03:28:02,309
THAT IS A CRITICAL COMPONENT OF

5442
03:28:02,309 --> 03:28:04,111
THE PROCESS, WE DO OUR BEST TO

5443
03:28:04,111 --> 03:28:06,012
BE DILIGENT ABOUT GOALS AND

5444
03:28:06,012 --> 03:28:11,752
VERGE INTO CREATING NEW

5445
03:28:11,752 --> 03:28:13,286
COMPONENTS TO CDE BUT WE ARE

5446
03:28:13,286 --> 03:28:19,493
HELPED BY COLLEAGUES. THIS IS A

5447
03:28:19,493 --> 03:28:22,429
OVERVIEW, THE PAIN GROUP AT

5448
03:28:22,429 --> 03:28:24,931
TABLE OF THE NEW OR REVISED

5449
03:28:24,931 --> 03:28:26,600
TOOLS THAT HAVE BEEN INCLUDED IN

5450
03:28:26,600 --> 03:28:31,171
THAT NEW RELEASE. THAT IS COMING

5451
03:28:31,171 --> 03:28:33,940
SOON. THE LAST THING TO

5452
03:28:33,940 --> 03:28:35,408
EMPHASIZE HERE IS THERE IS

5453
03:28:35,408 --> 03:28:37,110
CONTINUED FOCUS IN THINKING

5454
03:28:37,110 --> 03:28:38,478
ABOUT HOW TO BEST INTEGRATION

5455
03:28:38,478 --> 03:28:42,015
THIS INTO OTHER TOOLS USE.ED. I

5456
03:28:42,015 --> 03:28:43,817
GIVE THAT EXAMPLE OF RED CAP,ING

5457
03:28:43,817 --> 03:28:44,518
THISOR SOMETHING WE HAVE BEEN

5458
03:28:44,518 --> 03:28:47,521
PROVIDING TRAINING ON AT THE

5459
03:28:47,521 --> 03:28:51,057
AACPM MEETING. IN WORKSHOP

5460
03:28:51,057 --> 03:28:53,760
FORMAT. OUR PARTNERS AT NINDS

5461
03:28:53,760 --> 03:28:56,663
HAVE BEEN ENCOURAGING AND

5462
03:28:56,663 --> 03:28:57,964
COLLABORATING TO CONTINUE TO

5463
03:28:57,964 --> 03:28:59,166
PUSH THAT TRAINING OUT SO FOLKS

5464
03:28:59,166 --> 03:29:03,336
HAVE ACCESS TO IT.  THAT IS

5465
03:29:03,336 --> 03:29:04,504
EVERYTHING I HAVE TO GIVE SOME

5466
03:29:04,504 --> 03:29:06,173
BRIEF UPDATES THERE, ENCOURAGE

5467
03:29:06,173 --> 03:29:07,841
QUESTIONS OR THOUGHTS YOU MIGHT

5468
03:29:07,841 --> 03:29:08,875
HAVE AND TO INVITE YOU TO

5469
03:29:08,875 --> 03:29:10,610
CONTINUE TO BE PART OF THIS

5470
03:29:10,610 --> 03:29:12,145
EVOLVING PROCESS OVERTIME. THANK

5471
03:29:12,145 --> 03:29:16,049
YOU.

5472
03:29:16,049 --> 03:29:17,884
>> GOOD AFTERNOON, HELLO
MY NAME

5473
03:29:17,884 --> 03:29:20,053
IS PAUL CROSS GROSS PRESIDENT

5474
03:29:20,053 --> 03:29:21,955
AND CEO CO-POUNDER OF THE

5475
03:29:21,955 --> 03:29:26,226
CEREBRAL PALSY RESEARCH NETWORK

5476
03:29:26,226 --> 03:29:26,793
AND APPRECIATIVE OF THE NIH

5477
03:29:26,793 --> 03:29:27,694
STAFF INVITING ME TO TALK ABOUT

5478
03:29:27,694 --> 03:29:32,899
THE USE OF REGISTRIES IN CP

5479
03:29:32,899 --> 03:29:34,434
RESEARCH. TO GIVE AN IDEAL HOW

5480
03:29:34,434 --> 03:29:35,402
TO PRESENT THIS INFORMATION I

5481
03:29:35,402 --> 03:29:38,405
WILL START WITH GOING BACK TO

5482
03:29:38,405 --> 03:29:40,006
THE 2014 MEETING WHERE WE

5483
03:29:40,006 --> 03:29:42,876
DISCUSSED REGISTRIES

5484
03:29:42,876 --> 03:29:43,777
SUBSTANTIALLY AND TALK ABOUT THE

5485
03:29:43,777 --> 03:29:45,812
WORK THAT CAME OUT OF THAT TO

5486
03:29:45,812 --> 03:29:47,647
CREATE A NATIONAL REGISTRY AND

5487
03:29:47,647 --> 03:29:52,385
THE CP RESEARCH NETWORK. I WILL

5488
03:29:52,385 --> 03:29:53,553
DESCRIBE HOW IT IS BUILT AND

5489
03:29:53,553 --> 03:29:56,356
USED IN RESEARCH AND TOUCH OTHER

5490
03:29:56,356 --> 03:29:57,190
REG REASON INDUSTRIES USED IN

5491
03:29:57,190 --> 03:29:58,959
THE UNITED STATES FOR CPE

5492
03:29:58,959 --> 03:30:00,327
RESEARCH. THROUGHOUT THE

5493
03:30:00,327 --> 03:30:04,331
PRESENTATION I HAVE USED THIS

5494
03:30:04,331 --> 03:30:06,466
LITTLE TABLET TO INDICATE WHERE

5495
03:30:06,466 --> 03:30:10,170
WHAT I AM TALKING HAS OTHER

5496
03:30:10,170 --> 03:30:11,538
IMPACT ON THE STRATEGIC PLAN

5497
03:30:11,538 --> 03:30:14,875
BEYOND JUST THE CHALLENGE

5498
03:30:14,875 --> 03:30:16,676
REGISTRIES SET OF PRIORITIES AND

5499
03:30:16,676 --> 03:30:18,211
RECOMMENDATIONS SO YOU WILL SEE

5500
03:30:18,211 --> 03:30:20,046
I WILL REFERENCE THOSE. AS I

5501
03:30:20,046 --> 03:30:23,817
SAID THIS STARTED WITH THE FIRST

5502
03:30:23,817 --> 03:30:26,453
NINDS NICHD WORKSHOP IN 2014,

5503
03:30:26,453 --> 03:30:29,923
TWO MEETINGS THAT CONTRIBUTED TO

5504
03:30:29,923 --> 03:30:32,859
THE STRATEGIC PLAN. THE 2014

5505
03:30:32,859 --> 03:30:34,094
MEETING HAD A SPECIFIC

5506
03:30:34,094 --> 03:30:35,795
DISCUSSION AROUND REGISTRIES IN

5507
03:30:35,795 --> 03:30:40,066
SURVEILLANCE AS A KEY TOPIC. DR.

5508
03:30:40,066 --> 03:30:41,668
SHEVELLE SPOKE CANADIAN

5509
03:30:41,668 --> 03:30:42,669
REGISTRY, DR. GAY LORD SPOKE

5510
03:30:42,669 --> 03:30:44,070
ABOUT STATE OF REGISTRIES IN THE

5511
03:30:44,070 --> 03:30:46,806
U.S. AND SPECIFICALLY THE CP

5512
03:30:46,806 --> 03:30:48,108
RESEARCH REGISTRY SHE IS

5513
03:30:48,108 --> 03:30:50,677
AFFILIATED WITH, AND DR.

5514
03:30:50,677 --> 03:30:52,212
(INAUDIBLE) SPOKE ABOUT THE ADAM

5515
03:30:52,212 --> 03:30:55,448
NETWORK AND THE CP SURVEILLANCE

5516
03:30:55,448 --> 03:30:58,151
PART OF THAT. SO THIS MEETING

5517
03:30:58,151 --> 03:31:00,086
WAS QUITE UNIQUE FROM THE

5518
03:31:00,086 --> 03:31:02,255
PERSPECTIVE AT THE END, WE

5519
03:31:02,255 --> 03:31:05,926
ASSIGNED TASK FORCE GROUPS TO

5520
03:31:05,926 --> 03:31:07,193
CARRY FORWARD DELIVERABLES TO

5521
03:31:07,193 --> 03:31:10,664
DRIVE TO A PLAN TO THE PLAN. SO

5522
03:31:10,664 --> 03:31:12,766
SOME OF THE FINDINGS FROM THE

5523
03:31:12,766 --> 03:31:16,102
MEETING WERE WE HAD DIFFERENT

5524
03:31:16,102 --> 03:31:16,836
USES, COLLIELY FOR DIFFERENT

5525
03:31:16,836 --> 03:31:18,972
TYPES OF REGISTRIES OR

5526
03:31:18,972 --> 03:31:20,006
SURVEILLANCE, SO THERE WERE

5527
03:31:20,006 --> 03:31:21,541
THINGS THAT WERE FOCUSED ON

5528
03:31:21,541 --> 03:31:22,842
POPULATION LIKE EPIDEMIOLOGY AND

5529
03:31:22,842 --> 03:31:25,045
RISK FACTORS AND TRACKING

5530
03:31:25,045 --> 03:31:27,047
INCIDENCE AND PREVALENCE, AND

5531
03:31:27,047 --> 03:31:29,015
THEN INTERVENTION BASED

5532
03:31:29,015 --> 03:31:29,582
REGISTRIES THAT WERE OFTEN

5533
03:31:29,582 --> 03:31:31,751
CENTER BASED USED FOR STUDY

5534
03:31:31,751 --> 03:31:33,219
PLANNING OR RECRUITMENT FOR

5535
03:31:33,219 --> 03:31:36,156
RESEARCH. THERE WERE A FEW

5536
03:31:36,156 --> 03:31:37,924
SINGLE CENTER REGISTRIES IN THE

5537
03:31:37,924 --> 03:31:41,561
U.S. AT THE TIME AND THEN REALLY

5538
03:31:41,561 --> 03:31:45,231
MOST FUNDED AFTER THE CDC

5539
03:31:45,231 --> 03:31:47,233
EFFORTS TO DRIVE SURVEILLANCE

5540
03:31:47,233 --> 03:31:50,303
THROUGH THE ADAM NETWORK

5541
03:31:50,303 --> 03:31:52,605
HAPPENING IN THREE OR FOUR

5542
03:31:52,605 --> 03:31:55,575
LOCALITIES FUNDING TIME FRAME. 

5543
03:31:55,575 --> 03:31:57,711
ONE IDENTIFIED WAS FUNDING

5544
03:31:57,711 --> 03:31:58,378
SUSTAINABILITY OF INFRASTRUCTURE

5545
03:31:58,378 --> 03:32:01,481
IS CHALLENGING FOR NATIONAL

5546
03:32:01,481 --> 03:32:05,151
REGISTRY. ALL SUCCESSFUL

5547
03:32:05,151 --> 03:32:06,886
REGISTERED AS OUTSIDE THE U.S.

5548
03:32:06,886 --> 03:32:08,188
RUNNING IN COUNTRIES WITH

5549
03:32:08,188 --> 03:32:11,157
SOCIALIZED MEDICINE. AT THE END

5550
03:32:11,157 --> 03:32:13,093
OF THAT DR. (INAUDIBLE) ASSIGNED

5551
03:32:13,093 --> 03:32:14,461
TO THE REGISTRY TASK FORCE AND

5552
03:32:14,461 --> 03:32:17,664
PEOPLE SIGNED UP TO MOVE THOSE

5553
03:32:17,664 --> 03:32:22,635
TOPICS FORWARD. SO THE GROUP

5554
03:32:22,635 --> 03:32:24,404
STARTED MEETING MULTIPLE TIMES A

5555
03:32:24,404 --> 03:32:26,806
MONTH AND VERY QUICKLY DR.

5556
03:32:26,806 --> 03:32:28,375
(INAUDIBLE) AND I DECIDED TO

5557
03:32:28,375 --> 03:32:30,176
HAVE TWO DIFFERENT TOPICS

5558
03:32:30,176 --> 03:32:32,812
BETWEEN POPULATION BASED

5559
03:32:32,812 --> 03:32:34,214
REGISTRIES WHICH DR. GAY LORD

5560
03:32:34,214 --> 03:32:37,083
LED THE EFFORT ON AND CENTER

5561
03:32:37,083 --> 03:32:38,385
BASED INTERVENTION REGISTRIES

5562
03:32:38,385 --> 03:32:41,488
WHICH I LED THE EFFORT ON. SO WE

5563
03:32:41,488 --> 03:32:42,455
DEVICED THE FIRST SEARCH AFTER

5564
03:32:42,455 --> 03:32:44,290
THE MEETING. AFTER SEVERAL

5565
03:32:44,290 --> 03:32:45,425
MEETINGS WE CAME TO THE

5566
03:32:45,425 --> 03:32:47,761
CONCLUSION THAT THE POPULATION

5567
03:32:47,761 --> 03:32:49,662
GROUP CONCLUDED THAT THE BEST

5568
03:32:49,662 --> 03:32:51,831
THING FOR POPULATION OBSERVATION

5569
03:32:51,831 --> 03:32:55,435
WAS TO ADVOCATE TO INCREASE

5570
03:32:55,435 --> 03:32:57,037
FUNDING FOR ATOM SURVEILLANCE

5571
03:32:57,037 --> 03:32:59,339
AND ADVOCATING IS NOT WHAT NIH

5572
03:32:59,339 --> 03:33:01,174
DOES AND THEY WERE NOT PART OF

5573
03:33:01,174 --> 03:33:03,009
THOSE DISCUSSIONS. THE CENTER

5574
03:33:03,009 --> 03:33:05,045
BASED GROUP DECIDED TO FORM A

5575
03:33:05,045 --> 03:33:07,680
NETWORK WITH A REGISTRY AT ITS

5576
03:33:07,680 --> 03:33:09,482
CORE. FOR OTHER RECOMMENDATIONS

5577
03:33:09,482 --> 03:33:11,317
AND TASK FORCES THAT CAME OUT OF

5578
03:33:11,317 --> 03:33:13,086
THAT MEETING INCLUDING MORE

5579
03:33:13,086 --> 03:33:15,221
COMPARATIVE EFFECTIVENESS

5580
03:33:15,221 --> 03:33:18,024
RESEARCH.  WHICH WAS DRIVEN BY

5581
03:33:18,024 --> 03:33:19,526
DR.S STEVENSON INCREASING THE

5582
03:33:19,526 --> 03:33:23,530
STUDY OF ADULTS WHICH DR.

5583
03:33:23,530 --> 03:33:25,131
(INAUDIBLE) AND OTHERS LEADING

5584
03:33:25,131 --> 03:33:26,399
AND BRING MORE YOUNG SCIENTISTS

5585
03:33:26,399 --> 03:33:29,769
INTO THE FIELD WHICH JONATHAN

5586
03:33:29,769 --> 03:33:33,106
LED THE EFFORT ON. SO AS I SAID

5587
03:33:33,106 --> 03:33:34,908
OUR GROUP DECIDED TO FORM A

5588
03:33:34,908 --> 03:33:35,809
NETWORK AND THAT WAS THE START

5589
03:33:35,809 --> 03:33:39,112
OF THE CP RESEARCH NETWORK IN

5590
03:33:39,112 --> 03:33:41,047
APRIL 2014.MENT THE FIRST THING

5591
03:33:41,047 --> 03:33:43,616
IS SET OUT TO DEFINE

5592
03:33:43,616 --> 03:33:44,918
MULTI-DISCIPLINE REGISTRY, YOU

5593
03:33:44,918 --> 03:33:46,186
CAN SEE I'M REFERRING TO THE

5594
03:33:46,186 --> 03:33:47,287
DIFFERENT ASPECTS OF THESE

5595
03:33:47,287 --> 03:33:49,255
DECISIONS AND IMPACT ON THE

5596
03:33:49,255 --> 03:33:51,624
PLAN. WE ESTABLISHED FOUR

5597
03:33:51,624 --> 03:33:52,926
DISCIPLINE GROUPS NEUROSURGERY

5598
03:33:52,926 --> 03:33:56,062
GROUP, ORTHOPEDICS GROUP, PT

5599
03:33:56,062 --> 03:33:58,932
GROUP, NON-SURGICAL INCLUDING

5600
03:33:58,932 --> 03:34:01,434
DEVELOPING PEDIATRICIANS,

5601
03:34:01,434 --> 03:34:02,969
NEUROLOGISTS PHYSICAL MEDICINE

5602
03:34:02,969 --> 03:34:05,405
DOCS, THIS WORK ENDED UP

5603
03:34:05,405 --> 03:34:06,940
ENGAGING AND CONSOLIDATING SOME

5604
03:34:06,940 --> 03:34:08,308
OF THOSE ACTIVE SINGLE CENTER

5605
03:34:08,308 --> 03:34:12,479
REGISTRIES INCLUDING NATIONWIDE

5606
03:34:12,479 --> 03:34:15,715
AND WE BASED OUR DATA COLLECTION

5607
03:34:15,715 --> 03:34:19,953
OFF THE MODEL WE SAW NATIONWIDE

5608
03:34:19,953 --> 03:34:22,021
CHILDREN'S LEARN FROM EVERY

5609
03:34:22,021 --> 03:34:25,024
PATIENT REGISTRY, WHERE DOCTOR

5610
03:34:25,024 --> 03:34:26,326
ASKS FOR USUAL CARE AND EMR

5611
03:34:26,326 --> 03:34:28,495
FORMS. WE WORKED WITH THE ADULT

5612
03:34:28,495 --> 03:34:30,563
TASK FORCE TO HAVE THEM VALIDATE

5613
03:34:30,563 --> 03:34:32,332
OUR REGISTRY ELEMENTS FOR USE

5614
03:34:32,332 --> 03:34:35,168
WITH ADULTS.  THE DESIGN POINT

5615
03:34:35,168 --> 03:34:36,769
FOR THE REGISTRY OF QUESTION WAS

5616
03:34:36,769 --> 03:34:39,205
A PRACTICE BASED EVIDENCE

5617
03:34:39,205 --> 03:34:40,406
METHODOLOGY, SUSAN HORN

5618
03:34:40,406 --> 03:34:43,176
PRESENTED AT THE 2014 MEETING

5619
03:34:43,176 --> 03:34:45,912
LED OUR EFFORTS TO ANSWER THE

5620
03:34:45,912 --> 03:34:47,046
QUESTION OR WHAT DATA TO COLLECT

5621
03:34:47,046 --> 03:34:49,015
TO ANSWER THE QUESTION WHAT

5622
03:34:49,015 --> 03:34:50,850
PATIENT CHARACTERISTICS AND

5623
03:34:50,850 --> 03:34:51,951
INTERVENTIONS MAKE A DIFFERENCE

5624
03:34:51,951 --> 03:34:54,354
IN OUTCOME. WE WENT TO SECURE

5625
03:34:54,354 --> 03:35:01,127
SUFFICIENT PHILANTHROPIC

5626
03:35:01,127 --> 03:35:02,061
FUNDING, FOR FIVE YEARS OF THE

5627
03:35:02,061 --> 03:35:03,163
NETWORK AND LATER WE ESTABLISHED

5628
03:35:03,163 --> 03:35:07,400
A LONG TERM SUSTAINABILITY

5629
03:35:07,400 --> 03:35:09,569
MODEL. SO AS I SAID WE DECIDED

5630
03:35:09,569 --> 03:35:12,238
WE NEED TO WRAP A NETWORK AROUND

5631
03:35:12,238 --> 03:35:13,640
THE REGISTRY SO THE INITIAL

5632
03:35:13,640 --> 03:35:14,541
SITES THAT WERE INVOLVED IN

5633
03:35:14,541 --> 03:35:16,609
PLANNING THE REGISTRY WHERE

5634
03:35:16,609 --> 03:35:18,478
CHILDREN'S ALABAMA, CINCINNATI

5635
03:35:18,478 --> 03:35:20,446
CHILDREN'S, NETWORK, NATIONWIDE

5636
03:35:20,446 --> 03:35:22,615
CHILDREN'S HOSPITAL, SICK KIDS.

5637
03:35:22,615 --> 03:35:24,517
AND UNIVERSITY OF UTAH AS OUR

5638
03:35:24,517 --> 03:35:27,320
DATA COORDINATING CENTER. WE SET

5639
03:35:27,320 --> 03:35:29,789
A STRATEGY, WE IMPLEMENTED THE

5640
03:35:29,789 --> 03:35:31,824
REGISTRY AND THEN IN JANUARY OF

5641
03:35:31,824 --> 03:35:33,860
2016 WE INVITED 16 OTHER SITES

5642
03:35:33,860 --> 03:35:37,063
TO JOIN US AS SITES TO ADD DATA

5643
03:35:37,063 --> 03:35:40,300
TO THAT REGISTRY AND PART PAID

5644
03:35:40,300 --> 03:35:41,968
IN COLLABORATIVE RESEARCH. WE

5645
03:35:41,968 --> 03:35:43,169
CREATE A SET OF STANDARD

5646
03:35:43,169 --> 03:35:44,504
OPERATING PROCEDURES FOR

5647
03:35:44,504 --> 03:35:47,307
COLLABORATIVE RESEARCH, FOR DATA

5648
03:35:47,307 --> 03:35:55,114
ACCESS AND PUBLICATIONS, FOR THE

5649
03:35:55,114 --> 03:35:57,417
CLINICAL REGISTRY ON CPRN.ORG. 

5650
03:35:57,417 --> 03:36:00,253
WE ESTABLISH A SET OF MONTHLY

5651
03:36:00,253 --> 03:36:02,889
VIRTUAL AND ANNUAL IN PERSON

5652
03:36:02,889 --> 03:36:04,958
MEETINGS. AND WE IMMEDIATELY

5653
03:36:04,958 --> 03:36:09,295
PARTNERED WITH DR.S DAMIANO AND

5654
03:36:09,295 --> 03:36:10,730
STEVENSON ON MULTI-CENTER

5655
03:36:10,730 --> 03:36:12,832
COMPARATIVE EFFECTIVENESS

5656
03:36:12,832 --> 03:36:17,070
GRANTS. APPLY IN 2014, 2015 TO

5657
03:36:17,070 --> 03:36:20,173
PCORI AND SINCE MOVED THAT

5658
03:36:20,173 --> 03:36:23,843
FORWARD IN GRANTS PURSUING NIH. 

5659
03:36:23,843 --> 03:36:26,646
SO WHAT WE FORMED WAS A LEARNING

5660
03:36:26,646 --> 03:36:29,148
HEALTH NETWORK FOR CEREBRAL

5661
03:36:29,148 --> 03:36:32,018
PALSY ACROSS THE US.  PARTS OF

5662
03:36:32,018 --> 03:36:34,087
CANADA, WITH MORE THAN -- SITES,

5663
03:36:34,087 --> 03:36:35,488
GREEN PINS REPRESENT SITES

5664
03:36:35,488 --> 03:36:37,457
ACTIVELY COLLECTING DATA, THE

5665
03:36:37,457 --> 03:36:41,594
YELLOW PINS ARE WORKING ON THE

5666
03:36:41,594 --> 03:36:44,430
TECHNOLOGY PORTION RED PIN ON

5667
03:36:44,430 --> 03:36:45,999
SCIENCE AND BLUE KIP PINS RAISE

5668
03:36:45,999 --> 03:36:47,967
THEIR HAND SAID THEY ARE

5669
03:36:47,967 --> 03:36:49,068
INTERESTED IN PARTICIPATING BUT

5670
03:36:49,068 --> 03:36:50,036
NOT GONE THROUGH THE

5671
03:36:50,036 --> 03:36:51,204
PARTICIPATION AND AGREEMENT AS

5672
03:36:51,204 --> 03:36:54,741
OF YET.  SO ONE OF THE FIRST

5673
03:36:54,741 --> 03:36:56,709
THING WE DID, REALLY ADDRESSES A

5674
03:36:56,709 --> 03:36:58,444
KEY ELEMENT OF THE STRATEGIC

5675
03:36:58,444 --> 03:37:00,380
PLAN IN TERMS OF ENGAGING THE

5676
03:37:00,380 --> 03:37:03,349
COMMUNITY, SO WE WENT OUT AND

5677
03:37:03,349 --> 03:37:04,384
GOT PCORI FUNDED ENGAGEMENT

5678
03:37:04,384 --> 03:37:07,687
AWARD IN 2017 AND RAN A PROCESS

5679
03:37:07,687 --> 03:37:09,355
PUBLISHED RESULTS UP IN 2018, WE

5680
03:37:09,355 --> 03:37:11,924
RAN A SET OF INFORMATION PAL

5681
03:37:11,924 --> 03:37:13,593
WEBINARS THAT INVOLVE MORE THAN

5682
03:37:13,593 --> 03:37:16,262
200 PEOPLE, WE DID A

5683
03:37:16,262 --> 03:37:18,631
COLLABORATIVE RESEARCH QUESTION

5684
03:37:18,631 --> 03:37:20,366
GENERATION PROCESS GENERATED

5685
03:37:20,366 --> 03:37:21,901
PRIORITIZE ALONG WITH SOME

5686
03:37:21,901 --> 03:37:26,306
IDEAS. AND THEN WE CAME TOGETHER

5687
03:37:26,306 --> 03:37:27,640
WORKSHOP AND FINALIZED 16

5688
03:37:27,640 --> 03:37:31,044
RESEARCH IDEAS, THAT GROUPED

5689
03:37:31,044 --> 03:37:33,846
INTO THREE MAIN THEMES INCLUDING

5690
03:37:33,846 --> 03:37:35,748
ADULT ISSUE AROUND AGING PAIN

5691
03:37:35,748 --> 03:37:37,784
AND FATIGUE. COMPARATIVE

5692
03:37:37,784 --> 03:37:38,685
EFFECTIVENESS OF INTERVENTIONS

5693
03:37:38,685 --> 03:37:40,486
AND QUALITY OF LIFE. THAT WAS

5694
03:37:40,486 --> 03:37:42,188
PUBLISHED IN DEVELOPMENTAL

5695
03:37:42,188 --> 03:37:45,558
MEDICINE, CHILD NEUROLOGY IN

5696
03:37:45,558 --> 03:37:47,927
AUGUST OF 2018 AND DRIVES

5697
03:37:47,927 --> 03:37:49,662
RESEARCH AGENDA. ONE OF THE

5698
03:37:49,662 --> 03:37:51,798
THINGS WE LEARNED FROM THAT

5699
03:37:51,798 --> 03:37:53,633
PROCESS WAS THE IMPORTANCE OF

5700
03:37:53,633 --> 03:37:56,369
LONGITUDINAL STUDIES, AND THE

5701
03:37:56,369 --> 03:37:59,672
IMPORTANCE OF THE ADULT

5702
03:37:59,672 --> 03:38:00,773
COMMUNITY EMPHASIZED BY

5703
03:38:00,773 --> 03:38:02,709
COMMUNITY INVOLVEMENT IN THAT

5704
03:38:02,709 --> 03:38:04,110
WHICH IS FAIRLY BALANCED SLICE

5705
03:38:04,110 --> 03:38:07,213
OF THE COMMUNITY SO YOU CAN SEE

5706
03:38:07,213 --> 03:38:10,817
ADDRESSING MORE STRATEGIC PLAN

5707
03:38:10,817 --> 03:38:13,086
SO WE SET OUT HOW TO DO THIS AND

5708
03:38:13,086 --> 03:38:14,687
WE BELIEVE PATIENT REPORTED

5709
03:38:14,687 --> 03:38:16,189
OUTCOMES REGISTRY PATIENT

5710
03:38:16,189 --> 03:38:17,857
POWERED WOULD BE CRITICAL SO WE

5711
03:38:17,857 --> 03:38:20,526
ENGAGED BROAD SET OF COMMUNITY

5712
03:38:20,526 --> 03:38:25,665
ADVISORS AND WITH THEM, DR.

5713
03:38:25,665 --> 03:38:26,265
(INAUDIBLE) AND THORP LED AN

5714
03:38:26,265 --> 03:38:30,837
EFFORT TO PRODUCE ADULT STUDY OF

5715
03:38:30,837 --> 03:38:33,639
WELL BEING AND PAIN, CO-PRODUCE

5716
03:38:33,639 --> 03:38:34,907
WITH THE COMMUNITY. TO MAKE IT

5717
03:38:34,907 --> 03:38:38,144
AVAILABLE TO PEOPLE WE WRAP THAT

5718
03:38:38,144 --> 03:38:41,381
IN A PLATFORM WITHIN CPRN CALLED

5719
03:38:41,381 --> 03:38:43,850
MY CP WHICH ALLOWS THE COMMUNITY

5720
03:38:43,850 --> 03:38:47,420
AT LARGE TO PARTICIPATE IN CPRN

5721
03:38:47,420 --> 03:38:49,122
COMMUNITY REGISTRY. THEN

5722
03:38:49,122 --> 03:38:50,456
PROVIDED ADDITIONAL THINGS

5723
03:38:50,456 --> 03:38:53,059
WRAPPED AROUND THAT PLATFORM

5724
03:38:53,059 --> 03:38:54,761
INCLUDING PRIVATE FORM FOR

5725
03:38:54,761 --> 03:38:55,661
DISCUSSION OF RESEARCH

5726
03:38:55,661 --> 03:38:56,963
PRIORITIES ON EVIDENCE AND LIVED

5727
03:38:56,963 --> 03:38:58,131
EXPERIENCE FOR THE EXTENDED

5728
03:38:58,131 --> 03:39:01,300
COMMUNITY. SO NOT ONLY PEOPLE

5729
03:39:01,300 --> 03:39:03,503
WITH CP CAREGIVERS BUT ALSO

5730
03:39:03,503 --> 03:39:05,738
CLINICIANS. THEN WE OFFER

5731
03:39:05,738 --> 03:39:07,073
PERSONALIZED WEB CONTENT BASED

5732
03:39:07,073 --> 03:39:08,474
ON WHAT PEOPLE SHARED WITH US

5733
03:39:08,474 --> 03:39:11,911
ABOUT CP. SO IN TERMS OF THE

5734
03:39:11,911 --> 03:39:15,181
USES OF REGISTRY IN RESEARCH, IT

5735
03:39:15,181 --> 03:39:16,816
IS DIFFERENT BETWEEN CLINICAL

5736
03:39:16,816 --> 03:39:18,651
REGISTRY AND COMMUNITY REGISTRY.

5737
03:39:18,651 --> 03:39:21,053
THE CLINICAL REGISTRY HAS

5738
03:39:21,053 --> 03:39:22,488
LONGITUDINAL CORE REGISTRY

5739
03:39:22,488 --> 03:39:24,123
QUESTION OF WHAT PATIENT

5740
03:39:24,123 --> 03:39:25,224
CHARACTERISTICS AND WHAT

5741
03:39:25,224 --> 03:39:26,559
INTERVENTIONS LEAD TO BEST

5742
03:39:26,559 --> 03:39:29,662
OUTCOME. BUT AS YOU HEARD FROM

5743
03:39:29,662 --> 03:39:34,834
DR. CREWER YESTERDAY, WE

5744
03:39:34,834 --> 03:39:36,402
PARTNERED ON THE GENOMEI INSIGHT

5745
03:39:36,402 --> 03:39:40,506
STUDY NIH FUNDED STUDY TO LOOK

5746
03:39:40,506 --> 03:39:43,543
AT INSIGHT TO CEREBRAL PALSY. WE

5747
03:39:43,543 --> 03:39:46,045
GOT FUNDING FROM PEDIATRIC

5748
03:39:46,045 --> 03:39:47,480
EPILEPSY RESEARCH TO ADD

5749
03:39:47,480 --> 03:39:50,450
EPILEPSY RESEARCH FOR KIDS WITH

5750
03:39:50,450 --> 03:39:54,053
CP AND EPILEPSY, WE HAVE USED IT

5751
03:39:54,053 --> 03:39:59,959
TO DO LOTS OF STUDY OF SURGICAL

5752
03:39:59,959 --> 03:40:01,160
SPASTICITY AND OTHER TREATMENTS

5753
03:40:01,160 --> 03:40:04,397
AND RECENTLY FUNDED AGAIN BY --

5754
03:40:04,397 --> 03:40:07,033
TO PLAN A STANDARDIZED MOTOR SAM

5755
03:40:07,033 --> 03:40:09,569
VIDEO REGISTRY TO ADD ON TO THE

5756
03:40:09,569 --> 03:40:13,306
REGISTRY. ALSO GET TO USE FOR

5757
03:40:13,306 --> 03:40:15,641
PRELIMINARY STUDY ON GRANTS MOST

5758
03:40:15,641 --> 03:40:19,579
RECENTLY TO PROVIDE PRELIMINARY

5759
03:40:19,579 --> 03:40:21,581
GRANTS FOR SCR EFFECTIVENESS

5760
03:40:21,581 --> 03:40:23,116
STUDY, WHILE NOT RESEARCH WE

5761
03:40:23,116 --> 03:40:25,151
EMBED QUALITY IMPROVEMENT EFFORT

5762
03:40:25,151 --> 03:40:26,452
ON PUMP INFECTIONS IN THE

5763
03:40:26,452 --> 03:40:28,621
REGISTRY, SO THE REGISTRY WITHIN

5764
03:40:28,621 --> 03:40:30,690
USED TO -- CAN BE USED TO

5765
03:40:30,690 --> 03:40:31,891
SUPPORT QUALITY IMPROVEMENT. ON

5766
03:40:31,891 --> 03:40:35,094
THE COMMUNITY REGISTRY SIDE WE

5767
03:40:35,094 --> 03:40:37,330
USE IT FOR ON BOARDING INITIAL

5768
03:40:37,330 --> 03:40:39,932
CHARACTERISTICS USED TO RECRUIT

5769
03:40:39,932 --> 03:40:42,034
FOR SPECIFIC STUDIES LIKE ADULT

5770
03:40:42,034 --> 03:40:44,203
STUDIES OFFING WITH BEING AND

5771
03:40:44,203 --> 03:40:45,738
PAIN. ALL THE OTHER STUDIES ARE

5772
03:40:45,738 --> 03:40:48,307
BUILT AS RED CAP SURVEYS THAT

5773
03:40:48,307 --> 03:40:50,042
CAN BE INTEGRATED INTO THE

5774
03:40:50,042 --> 03:40:51,344
COMMUNITY REGISTRY AND

5775
03:40:51,344 --> 03:40:53,746
AUTOMATICALLY REACHED OUT TO

5776
03:40:53,746 --> 03:40:55,848
PEOPLE IN THE MY CP TO

5777
03:40:55,848 --> 03:41:04,857
PARTICIPATE. ONE SCENARIO HOW IT

5778
03:41:04,857 --> 03:41:07,727
IS USED FOR VERGE IS EXPANDED BY

5779
03:41:07,727 --> 03:41:08,728
PARTNERSHIP, I WON'T TAKE YOU

5780
03:41:08,728 --> 03:41:11,964
THROUGH AN EXAMPLE. THESE ARE

5781
03:41:11,964 --> 03:41:16,536
SITES THAT CONTRIBUTE DATA TO

5782
03:41:16,536 --> 03:41:18,171
PHENOTYPIC DATA TO REGISTRY AND

5783
03:41:18,171 --> 03:41:21,073
ALSO PARTICIPATING IN THE

5784
03:41:21,073 --> 03:41:25,311
GENETICS STUDY. SO THE DATA THAT

5785
03:41:25,311 --> 03:41:27,813
IS COLLECTED IS UNWAIVER OF COP

5786
03:41:27,813 --> 03:41:29,448
SENT, A LIMITED DATA SET WHERE

5787
03:41:29,448 --> 03:41:31,851
PHI ITEMS ARE DATE OF BIRTH AND

5788
03:41:31,851 --> 03:41:36,155
COUNTER DATE.  BEYOND THAT THERE

5789
03:41:36,155 --> 03:41:42,328
ARE UP TO 500 UNIQUE TO CP

5790
03:41:42,328 --> 03:41:45,932
REGISTRY ELEMENTS AS WELL AS

5791
03:41:45,932 --> 03:41:51,938
EXTRACTION FROM EMR FOR PCORNET.

5792
03:41:51,938 --> 03:41:55,841
LABS PHARMACY, DEMOGRAPHICS AND

5793
03:41:55,841 --> 03:41:58,377
VITALS COME IN AS PART OF THAT.

5794
03:41:58,377 --> 03:41:59,278
THE LAST THING ARE SET OF

5795
03:41:59,278 --> 03:42:01,213
PRIVACY PRESERVING TOKENS WHICH

5796
03:42:01,213 --> 03:42:05,484
CAN BE USED FOR LINKING DATA

5797
03:42:05,484 --> 03:42:13,292
SETS. NOT PHI BUT GENERATED IN A

5798
03:42:13,292 --> 03:42:15,861
HASH, THIS IS THROUGH OUR

5799
03:42:15,861 --> 03:42:22,034
PARTNERSHIP SO THE WAY THEY ARE

5800
03:42:22,034 --> 03:42:24,270
CONTACTED THE PARTICIPANTS SEND

5801
03:42:24,270 --> 03:42:30,476
EMAIL OR SNAIL MAIL OR WEBINAR

5802
03:42:30,476 --> 03:42:32,211
TO CONTACT LAB AND RECEIVE A

5803
03:42:32,211 --> 03:42:36,582
URL, A LINK FOR THE I CONSENT,

5804
03:42:36,582 --> 03:42:38,618
THAT DR. CURE TALKED ABOUT.

5805
03:42:38,618 --> 03:42:39,952
THROUGH THAT WE GET A SPIT KIT

5806
03:42:39,952 --> 03:42:48,160
WHICH ALLOWS THEM TO SEQUENCE

5807
03:42:48,160 --> 03:42:50,496
DNA BUT ALSO CONSENT TO GENERATE

5808
03:42:50,496 --> 03:42:53,265
THE SAKE SAME TOKENS AND THE

5809
03:42:53,265 --> 03:42:56,202
CREW CAN SEND TO RDCC A REQUEST

5810
03:42:56,202 --> 03:42:58,337
FOR PHENE TIP ANALYSIS FOR THE

5811
03:42:58,337 --> 03:43:01,007
MATCHING TOKENS THEY HAVE

5812
03:43:01,007 --> 03:43:02,275
COLLECTED GENETIC SAMPLES FROM.

5813
03:43:02,275 --> 03:43:08,814
SO REALLY POWERFUL MODEL. SO THE

5814
03:43:08,814 --> 03:43:11,183
WAY THE DATA GOES IN THE PRIMARY

5815
03:43:11,183 --> 03:43:13,185
IS THROUGH EMR FORMS SO

5816
03:43:13,185 --> 03:43:16,956
CLINICIANS INTERACT WITH A POP

5817
03:43:16,956 --> 03:43:22,595
UP FORM CP ELEMENTS THAT INJECT

5818
03:43:22,595 --> 03:43:26,065
INTO NOTES.  ALL THE DATA IS

5819
03:43:26,065 --> 03:43:31,404
USUAL CARE DATA BUT THE FOR

5820
03:43:31,404 --> 03:43:39,278
FORMAT IS SAME THAN SENT TO THE

5821
03:43:39,278 --> 03:43:40,613
COORDINATING CENTER SO THE

5822
03:43:40,613 --> 03:43:41,714
SECOND METHOD IS USING CHART

5823
03:43:41,714 --> 03:43:46,452
EXTRACTION. THIS IS EXPENSIVE

5824
03:43:46,452 --> 03:43:50,956
AND SLOWER DUPLICATE RERESOURCES

5825
03:43:50,956 --> 03:43:53,426
OR ENTRY, BUT IT IS TARGET DATA

5826
03:43:53,426 --> 03:43:55,227
POPULATION, CENTRALIZE RED CAP

5827
03:43:55,227 --> 03:43:58,497
AND THAT DATA IS EXTRACTED AND

5828
03:43:58,497 --> 03:44:05,271
FROM RED CAP OVER TO REGISTRY.  

5829
03:44:05,271 --> 03:44:06,906
IN THE COMMUNITY REGISTRY IT IS

5830
03:44:06,906 --> 03:44:09,008
DONE BY PEOPLE ON BOARDED TO OUR

5831
03:44:09,008 --> 03:44:11,343
WEBSITE FOR MY CP, THEY GET

5832
03:44:11,343 --> 03:44:13,179
PRESENTED THE SURVEYS THAT MAKES

5833
03:44:13,179 --> 03:44:14,447
SENSE FOR WHO THEY ARE AND GO

5834
03:44:14,447 --> 03:44:20,619
THROUGH INFORMED CONSENT PROCESS

5835
03:44:20,619 --> 03:44:22,722
AND CAN KICK OFF FROM WEBSITE,

5836
03:44:22,722 --> 03:44:24,323
AND RECEIVE EMAIL REMINDERS

5837
03:44:24,323 --> 03:44:26,425
ABOUT NEW SURVEY LONGITUDINAL

5838
03:44:26,425 --> 03:44:28,127
FOLLOW-UPS TO SURVEYS AND THEN

5839
03:44:28,127 --> 03:44:30,429
CONNECTED TO A SURVEY THAT IS

5840
03:44:30,429 --> 03:44:40,973
BUILT IN RED CAP. TWO QUICK SNAP

5841
03:44:40,973 --> 03:44:42,708
SHOTS NOVEMBER 21, 250 PATIENTS

5842
03:44:42,708 --> 03:44:44,477
YOU CAN SEE THE THE U SHAPED

5843
03:44:44,477 --> 03:44:46,979
CURVE OF GMSES WHICH IS

5844
03:44:46,979 --> 03:44:48,180
DIFFERENT THAN POPULATION BASED

5845
03:44:48,180 --> 03:44:50,383
VIEW BECAUSE NOT SURPRISINGLY

5846
03:44:50,383 --> 03:44:53,052
MORE INVOLVED POPULATIONS OF 4

5847
03:44:53,052 --> 03:44:55,287
RAND 5 ARE SEEN IN CLINIC AND

5848
03:44:55,287 --> 03:44:57,189
YOU SEE AGE DISTRIBUTION OR HERE

5849
03:44:57,189 --> 03:44:59,391
IS SIGNIFICANT NUMBER OF ADULTS

5850
03:44:59,391 --> 03:45:02,628
BUT IT IS DOMINATED BY THE MORE

5851
03:45:02,628 --> 03:45:06,132
PEDIATRIC DATA CONTRIBUTORS AT

5852
03:45:06,132 --> 03:45:07,867
THIS TIME. IF I COMPARE FROM THE

5853
03:45:07,867 --> 03:45:09,668
COMMUNITY REGISTRY A FEW DAYS

5854
03:45:09,668 --> 03:45:13,005
AGO THIS IS THE DISTRIBUTION OF

5855
03:45:13,005 --> 03:45:14,874
GMFCS SO MORE BALANCED MORE

5856
03:45:14,874 --> 03:45:18,310
HEAVILY LIENS TO GMFCS 2, A

5857
03:45:18,310 --> 03:45:20,679
LITTLE BIASED TOWARDS WHITE

5858
03:45:20,679 --> 03:45:23,249
MIDDLE CLASS AND YOU SCIAMACHY

5859
03:45:23,249 --> 03:45:26,051
BROADER AGE RANGE IN ADULTS

5860
03:45:26,051 --> 03:45:33,626
INVOLVED IN THE COMMUNITY

5861
03:45:33,626 --> 03:45:34,794
REGISTRIES.  I WANT TO TOUCH ON

5862
03:45:34,794 --> 03:45:36,962
THE NETWORKS WRAPPED AROUND IT

5863
03:45:36,962 --> 03:45:41,066
AND HOW RELATES TO STRATEGIC

5864
03:45:41,066 --> 03:45:44,036
PLAN. WE PRODUCE 2015 CP TOOL

5865
03:45:44,036 --> 03:45:47,273
KIT, A GREAT WAY FOR PARENTS NEW

5866
03:45:47,273 --> 03:45:48,707
DIAGNOSIS TO GET HELP

5867
03:45:48,707 --> 03:45:49,942
UNDERSTANDING, THIS WAS A CORE

5868
03:45:49,942 --> 03:45:52,077
THING RECOMMENDED IN THE

5869
03:45:52,077 --> 03:45:54,380
STRATEGIC PLAN SO WE DEVELOPED

5870
03:45:54,380 --> 03:45:56,015
THAT COMING OUT OF THAT MEETING.

5871
03:45:56,015 --> 03:45:58,884
IT IS TRANSLATED INTO SPANISH

5872
03:45:58,884 --> 03:46:03,289
AND PORTUGUESE. DEVELOPED A WELL

5873
03:46:03,289 --> 03:46:05,925
BEING GUIDE. SECONDLY WE ARE

5874
03:46:05,925 --> 03:46:08,761
PARTICIPANTS IN THE COMMON DATA

5875
03:46:08,761 --> 03:46:10,729
ELEMENTS EFFORT WE CONTRIBUTED

5876
03:46:10,729 --> 03:46:12,698
OUR DATA ELEMENTS AND WORKING TO

5877
03:46:12,698 --> 03:46:22,041
HARMONIZE THE OTHER ONES WITH

5878
03:46:22,041 --> 03:46:23,475
CPC. AND LASTLY ON DEVELOPMENT

5879
03:46:23,475 --> 03:46:24,510
WE TOUCH ALL RECOMMENDATIONS BUT

5880
03:46:24,510 --> 03:46:26,278
THIS IS A PARTIAL LIST OF NAMES

5881
03:46:26,278 --> 03:46:28,113
OF CLINICIANS AND RESEARCHERS

5882
03:46:28,113 --> 03:46:31,016
THAT HAVE BECOME CP RESEARCHERS

5883
03:46:31,016 --> 03:46:32,451
AS FUNCTION OF INVOLVEMENT AND

5884
03:46:32,451 --> 03:46:37,556
INTEREST IN THE NETWORK AND

5885
03:46:37,556 --> 03:46:40,125
REGISTRY, SO TO CONCLUDE CP

5886
03:46:40,125 --> 03:46:41,627
RESEARCH NETWORK BOTH ARE YOUNG

5887
03:46:41,627 --> 03:46:44,797
IN DEVELOPMENT, WE HAVE SOME

5888
03:46:44,797 --> 03:46:45,464
CHALLENGES, WITH DIVERSITY

5889
03:46:45,464 --> 03:46:47,600
EQUITY AND INCLUSION IN

5890
03:46:47,600 --> 03:46:49,235
COMMUNITY REGISTRY BECAUSE OF

5891
03:46:49,235 --> 03:46:50,803
COLLECTION MODEL BUT OVERALL OUR

5892
03:46:50,803 --> 03:46:52,705
LEARNING HEALTH NETWORK IS AN

5893
03:46:52,705 --> 03:46:56,408
IDEAL MODEL HOW TO DO CLINICAL

5894
03:46:56,408 --> 03:46:58,277
RESEARCH ON COMMUNITY

5895
03:46:58,277 --> 03:46:59,945
PRIORITIES, QUALITY IMPROVEMENT

5896
03:46:59,945 --> 03:47:02,081
HOW WE CAN IMPLEMENT DISSEMINATE

5897
03:47:02,081 --> 03:47:03,282
EVIDENCE, PROVIDE A

5898
03:47:03,282 --> 03:47:04,149
COLLABORATIVE TRAINING

5899
03:47:04,149 --> 03:47:05,985
ENVIRONMENT AND ENGAGE THE WHOLE

5900
03:47:05,985 --> 03:47:08,087
COMMUNITY. AS I SAID WE HAVE

5901
03:47:08,087 --> 03:47:09,622
DETERMINED SUSTAINABILITY MODEL

5902
03:47:09,622 --> 03:47:11,156
TO OVERCOME THAT CORE CONCERN. 

5903
03:47:11,156 --> 03:47:13,692
SO FINALLY, TO TAKE A LOOK

5904
03:47:13,692 --> 03:47:19,164
OUTSIDE THE CPRN NUMEROUS CPs

5905
03:47:19,164 --> 03:47:22,134
USED IN THE UNITED STATES

5906
03:47:22,134 --> 03:47:25,304
LARGEST WHICH CP REGISTRY AT

5907
03:47:25,304 --> 03:47:29,475
NORTHERN UNIVERSITY, 2019 NEARLY

5908
03:47:29,475 --> 03:47:34,046
1400 PARTICIPANTS IN ILLINOIS. 

5909
03:47:34,046 --> 03:47:36,882
LOOK AT DEMOGRAPHICS THEY ARE

5910
03:47:36,882 --> 03:47:40,286
PRETTY BALANCED ON GMFCS THOUGH

5911
03:47:40,286 --> 03:47:42,121
THEY LEAD TO 4 AND 5 YOU EXPECT

5912
03:47:42,121 --> 03:47:43,989
TO SEE POPULATION BASED

5913
03:47:43,989 --> 03:47:45,758
REGISTRY. AND RECRUIT FOR

5914
03:47:45,758 --> 03:47:47,226
INTERVENTIONAL STUDIES BASIC AND

5915
03:47:47,226 --> 03:47:49,461
CLINICAL AS WELL AS FOR SURVEYS 

5916
03:47:49,461 --> 03:47:52,965
TO GIVE AN IDEA OF THEIR LEVEL

5917
03:47:52,965 --> 03:47:55,334
OF ACTIVITY 23 STUDIES BETWEEN

5918
03:47:55,334 --> 03:47:58,570
2019 AND 2021. COLUMBIA

5919
03:47:58,570 --> 03:48:00,572
UNIVERSITY ACTIVE WITH A

5920
03:48:00,572 --> 03:48:02,641
RECRUITMENT CONTACT REGISTRY OF

5921
03:48:02,641 --> 03:48:04,977
ABOUT A THOUSAND PARTICIPANTS IN

5922
03:48:04,977 --> 03:48:06,845
YOUNGER AGE GROUP AND THEY

5923
03:48:06,845 --> 03:48:10,749
RECRUITED 13 STUDIES IN THE LAST

5924
03:48:10,749 --> 03:48:16,956
FIVE YEARS THERE IS REGISTRY CP

5925
03:48:16,956 --> 03:48:18,090
CHILDREN'S HOSPITAL H GATHERING

5926
03:48:18,090 --> 03:48:19,925
INFORMATION ABOUT USAGE IN TIME

5927
03:48:19,925 --> 03:48:26,332
FOR THIS PRESENTATION.  IN

5928
03:48:26,332 --> 03:48:26,865
CONCLUSION, CONCLUSION FOR

5929
03:48:26,865 --> 03:48:27,466
FUTURE DIRECTIONS SEEKING TO

5930
03:48:27,466 --> 03:48:28,734
EXPAND NUMBER OF SITES

5931
03:48:28,734 --> 03:48:29,535
CONTRIBUTING PATIENT DATA TO

5932
03:48:29,535 --> 03:48:32,271
REGISTRY.  WE ARE EXCITED TO BE

5933
03:48:32,271 --> 03:48:36,275
DEVELOPING A DEIDENTIFIED

5934
03:48:36,275 --> 03:48:39,645
VERSION USED FOR DECENTRALIZED

5935
03:48:39,645 --> 03:48:41,213
RURAL LEVEL ANALYSIS OF THE

5936
03:48:41,213 --> 03:48:42,848
DATA. DR. (INAUDIBLE) HAS

5937
03:48:42,848 --> 03:48:44,550
RECENTLY RECEIVED A PLANNING

5938
03:48:44,550 --> 03:48:47,786
GRANT FOR A VIDEO REGISTRY FOR

5939
03:48:47,786 --> 03:48:52,291
DIAGNOSIS OF CP THAT IS VERY

5940
03:48:52,291 --> 03:48:53,792
EXCITING AND WE ARE WORKING IN

5941
03:48:53,792 --> 03:48:59,231
CONJUNCTION WITH HOPE FOR HIE TO

5942
03:48:59,231 --> 03:49:00,265
INCORPORATE EARLY FINDINGS

5943
03:49:00,265 --> 03:49:02,034
INCLUDING IMAGING TO REGISTRY.

5944
03:49:02,034 --> 03:49:06,405
THE IMMORTAL WORDS OF WAYNE

5945
03:49:06,405 --> 03:49:10,142
GRETSKI AND REITERATED BY DR.

5946
03:49:10,142 --> 03:49:11,744
KOROSHETZ 2018 WE NEED TO TAKE

5947
03:49:11,744 --> 03:49:13,812
MORE SHOTS ON GOAL. WE ARE

5948
03:49:13,812 --> 03:49:16,248
REALLY HOPING TO BRING MORE

5949
03:49:16,248 --> 03:49:19,852
CLINICAL TRANSLATIONAL

5950
03:49:19,852 --> 03:49:21,053
RESEARCHERS TO THE NEED

5951
03:49:21,053 --> 03:49:22,488
COLLABORATION WITH THIS WHOLE

5952
03:49:22,488 --> 03:49:24,823
PROOF GATHERED HERE TODAY SO

5953
03:49:24,823 --> 03:49:26,125
THANKS TO THE ORGANIZERS FOR

5954
03:49:26,125 --> 03:49:27,593
INVITING ME TO SPEAK ON THIS

5955
03:49:27,593 --> 03:49:28,660
TOPIC AND EVERYONE THAT HAS

5956
03:49:28,660 --> 03:49:35,067
CONTRIBUTED TO MAKING CP NETWORK

5957
03:49:35,067 --> 03:49:43,108
REGISTRY A SUCCESS. 

5958
03:49:43,108 --> 03:49:45,044
>> THANK YOU TO OUR
SPEAKERS,

5959
03:49:45,044 --> 03:49:47,246
THAT WAS A WONDERFUL SESSION, I

5960
03:49:47,246 --> 03:49:49,281
WANT TO THANK EACH REALLY

5961
03:49:49,281 --> 03:49:50,315
INDIVIDUALLY, IT'S BEEN

5962
03:49:50,315 --> 03:49:52,217
WONDERFUL SESSION, AGAIN MY NAME

5963
03:49:52,217 --> 03:49:53,686
IS ADAM HARTMAN, PROGRAM

5964
03:49:53,686 --> 03:49:55,087
DIRECTORS IN THE DIVISION OF

5965
03:49:55,087 --> 03:49:57,389
CLINICAL RESEARCH AT NINDS AND

5966
03:49:57,389 --> 03:50:01,860
CHILD NEUROLOGIST. WHAT I WANT

5967
03:50:01,860 --> 03:50:04,730
TO DO IS APPEARING IN TO THE

5968
03:50:04,730 --> 03:50:06,231
HOLLYWOOD SQUARES SCHEME HERE,

5969
03:50:06,231 --> 03:50:09,001
WE WILL START BY DOING A ROUND

5970
03:50:09,001 --> 03:50:10,469
ROBIN OF QUESTIONS INDIVIDUALS

5971
03:50:10,469 --> 03:50:13,138
AND THEN HAVE A GROUPED

5972
03:50:13,138 --> 03:50:15,441
DISCUSSION FOR FEW QUESTIONS

5973
03:50:15,441 --> 03:50:18,477
TOO. WE ARE GOING TO START WITH

5974
03:50:18,477 --> 03:50:22,214
DR. RAMEY, THE QUESTION WE HAVE

5975
03:50:22,214 --> 03:50:24,316
FOR YOU, IN ADDITION TO YOUR

5976
03:50:24,316 --> 03:50:26,118
PARENT PANEL, ARE YOU ALSO

5977
03:50:26,118 --> 03:50:28,987
ENGAGING ADULTS WITH CEREBRAL

5978
03:50:28,987 --> 03:50:30,222
PALSY PARTICULARLY THOSE

5979
03:50:30,222 --> 03:50:31,657
RECEIVED CONSTRAIN INDUCED

5980
03:50:31,657 --> 03:50:35,594
THERAPY?

5981
03:50:35,594 --> 03:50:38,063
>> ONE I MENTION WE
FORMALLY

5982
03:50:38,063 --> 03:50:40,699
EMBEDDED IN RULES CHILDREN ONLY

5983
03:50:40,699 --> 03:50:43,202
AFTER 36 MONTHS OF AGE, WE DON'T

5984
03:50:43,202 --> 03:50:47,039
HAVE ADULTS THERE BUT IN OUR

5985
03:50:47,039 --> 03:50:49,475
HONE CLINIC AT VIRGINIA TECH WE

5986
03:50:49,475 --> 03:50:53,145
DO FREQUENTLY HEAR FROM ENGAGE

5987
03:50:53,145 --> 03:50:55,214
ADULTS AND THIS YEAR WE ARE

5988
03:50:55,214 --> 03:50:58,117
PROUD, SHE ALLOWS US TO SHARE

5989
03:50:58,117 --> 03:51:01,587
SOMEONE WHO RECEIVED REPEATED

5990
03:51:01,587 --> 03:51:03,789
TREATMENT HERSELF ENTERED BAMD

5991
03:51:03,789 --> 03:51:04,923
PROGRAM, UNIVERSITY OF

5992
03:51:04,923 --> 03:51:08,660
MINNESOTA. AND HIS -- HAS DONE

5993
03:51:08,660 --> 03:51:11,063
FUND RAIDING FOR RESEARCH IN

5994
03:51:11,063 --> 03:51:12,764
THIS FIELD AND HERSELF PLANS TO

5995
03:51:12,764 --> 03:51:16,468
BECOME A PHYSICIAN AND INNOVATOR

5996
03:51:16,468 --> 03:51:21,673
IN TREATMENT SO WE ARE FORMING

5997
03:51:21,673 --> 03:51:23,075
OUR OWN FRIENDS GROUP BUT THE

5998
03:51:23,075 --> 03:51:28,280
IDEA WE HEAR FROM CHILDREN WHO

5999
03:51:28,280 --> 03:51:32,551
HAVE GROWN UP AND SHARE THEIR

6000
03:51:32,551 --> 03:51:33,685
EXPERIENCES WONDERFUL AND YEARS

6001
03:51:33,685 --> 03:51:35,654
AGO WE DID A HANDBOOK ON

6002
03:51:35,654 --> 03:51:40,759
PEDIATRIC CIMT IN HISTORY, WE

6003
03:51:40,759 --> 03:51:44,263
INTERVIEW YOUNG MAN WHO HAD ONE

6004
03:51:44,263 --> 03:51:46,999
OF THE FIRST FORMS OF THIS YEARS

6005
03:51:46,999 --> 03:51:49,535
AGO FROM STEVE WOLF'S WIFE. HE

6006
03:51:49,535 --> 03:51:51,036
DESCRIBE HOW MISERABLE HE WAS

6007
03:51:51,036 --> 03:51:52,704
GETTING THAT HORRIBLE TREATMENT

6008
03:51:52,704 --> 03:51:56,375
FROM THAT MEAN LADY. AND

6009
03:51:56,375 --> 03:51:58,677
WONDERFUL THING IT WAS IN HIS

6010
03:51:58,677 --> 03:52:02,347
LIFE. LIVED EXPERIENCES, WHEN

6011
03:52:02,347 --> 03:52:06,718
CHILDREN ARE REALLY LITTLE THEIR

6012
03:52:06,718 --> 03:52:07,786
PARENTS SPEAK FOR THEM BUT ONCE

6013
03:52:07,786 --> 03:52:09,888
7 OR 8 THEY WANT TO SPEAK FOR

6014
03:52:09,888 --> 03:52:11,190
THEMSELVES AND WHOEVER MADE THAT

6015
03:52:11,190 --> 03:52:12,791
SUGGESTION I THINK WE SHOULD

6016
03:52:12,791 --> 03:52:16,595
WORK ON THAT AND I THINK THAT IS

6017
03:52:16,595 --> 03:52:17,729
SOMETHING THAT NIH IS

6018
03:52:17,729 --> 03:52:19,531
INCREASINGLY RECEPTIVE TO. IT IS

6019
03:52:19,531 --> 03:52:23,502
VERY IMPORTANT POINT.

6020
03:52:23,502 --> 03:52:26,705
>> IF YOU WOULD LIKE AS
REMINDER

6021
03:52:26,705 --> 03:52:30,542
PUT YOUR QUESTIONS IN THE
Q&A

6022
03:52:30,542 --> 03:52:32,778
BOX, PLEASE TELL WHICH SPEAKER

6023
03:52:32,778 --> 03:52:34,980
YOU WANT IT DIRECTED TO OR

6024
03:52:34,980 --> 03:52:36,215
MODERATOR PREROGATIVE AND SHOOT

6025
03:52:36,215 --> 03:52:40,886
IT TO EVERYBODY. SO NEXT

6026
03:52:40,886 --> 03:52:42,454
QUESTION IS FOR DR. STEELE.

6027
03:52:42,454 --> 03:52:44,690
QUESTION IS WHAT DO YOU THINK OF

6028
03:52:44,690 --> 03:52:45,557
IMMERSION COURSES TO GET

6029
03:52:45,557 --> 03:52:48,260
ENGINEERS TO APPRECIATE THE

6030
03:52:48,260 --> 03:52:51,630
LIVED EXPERIENCE CLINICAL NEEDS

6031
03:52:51,630 --> 03:52:52,564
OF PEOPLE WITH CEREBRAL PALSY

6032
03:52:52,564 --> 03:52:56,401
AND DISABILITIES IN GENERAL?

6033
03:52:56,401 --> 03:52:58,070
>> GREAT QUESTION. THERE
WAS ONE

6034
03:52:58,070 --> 03:52:59,905
EASIER PRE-PANDEMIC. WHEN WE

6035
03:52:59,905 --> 03:53:00,939
THINK ABOUT IMMERSION IT IS NOT

6036
03:53:00,939 --> 03:53:03,742
JUST IN THE CLINIC, THAT'S WHERE

6037
03:53:03,742 --> 03:53:07,246
ESPECIALLY LATELY WE FOCUSED ON

6038
03:53:07,246 --> 03:53:08,280
COMMUNITY ORGANIZATIONS WHETHER

6039
03:53:08,280 --> 03:53:13,018
FOR ALL OR COVALENT OR CEREBRAL

6040
03:53:13,018 --> 03:53:14,720
PALSY ORGANIZATION, WITHIN THOSE

6041
03:53:14,720 --> 03:53:17,623
COMMUNITY ORGANIZATIONS CAN

6042
03:53:17,623 --> 03:53:20,859
PROVIDE OFTEN BOOK MORE

6043
03:53:20,859 --> 03:53:22,461
ACCESSIBLE AND MORE INCLUSIVE

6044
03:53:22,461 --> 03:53:26,265
THAN NECESSARILY FIZZ AL THERAPY

6045
03:53:26,265 --> 03:53:29,635
EARLY INTERVENTION OR CLINIC.

6046
03:53:29,635 --> 03:53:31,603
TRY TO GET ENGINEERS INTO CLINIC

6047
03:53:31,603 --> 03:53:33,038
OFTEN AS EARLY AS WE CAN BUT

6048
03:53:33,038 --> 03:53:35,807
EMPHASIZE THOSE COMMUNITY

6049
03:53:35,807 --> 03:53:39,711
ORGANIZATIONS AS WELL. 

6050
03:53:39,711 --> 03:53:41,280
>> FANTASTIC. THANK YOU.
THE

6051
03:53:41,280 --> 03:53:42,781
NEXT QUESTION IS FOR DR.

6052
03:53:42,781 --> 03:53:44,650
MOULTON. HOW DO WE ENSURE THAT

6053
03:53:44,650 --> 03:53:47,152
THE CDEs HAVE A VALIDITY THAT

6054
03:53:47,152 --> 03:53:49,054
CARRIES OVER INTO DIVERSE

6055
03:53:49,054 --> 03:53:50,756
POPULATIONS BECAUSE MANY WERE

6056
03:53:50,756 --> 03:53:51,923
DERIVED FROM NON-DIVERSE

6057
03:53:51,923 --> 03:53:54,860
POPULATIONS?

6058
03:53:54,860 --> 03:53:57,396
>> GREAT POINT. I THISSING
THIS

6059
03:53:57,396 --> 03:53:58,363
SOMETHING WE NEED TO CONTINUE TO

6060
03:53:58,363 --> 03:54:00,198
LOOK AT AS THEY ARE UPDATED AND

6061
03:54:00,198 --> 03:54:02,868
I WOULD ENCOURAGE MEMBERS OF THE

6062
03:54:02,868 --> 03:54:04,736
COMMUNITY LISTENING IN TODAY AND

6063
03:54:04,736 --> 03:54:06,638
YOUR FRIENDS AND COLLEAGUES, IF

6064
03:54:06,638 --> 03:54:09,941
YOU SEE AREAS THAT YOU THINK ARE

6065
03:54:09,941 --> 03:54:11,510
PROBLEMATIC OR THERE ARE GAPS WE

6066
03:54:11,510 --> 03:54:13,745
WANT THAT CONVERSAT CONVERSATIOT

6067
03:54:13,745 --> 03:54:17,449
AS STEERING COMMITTEE REGULARLY

6068
03:54:17,449 --> 03:54:19,718
BUT NOT TWICE A YEAR AND TAKE

6069
03:54:19,718 --> 03:54:21,486
SERIOUSLY EVERY COMMENT WE GET

6070
03:54:21,486 --> 03:54:25,424
IN. AND HAVE OUR OWN AGENDA

6071
03:54:25,424 --> 03:54:27,693
THINKING ABOUT AREAS WE

6072
03:54:27,693 --> 03:54:30,028
SYSTEMATICALLY LOOK AT NEXT. SO

6073
03:54:30,028 --> 03:54:31,663
I WOULD ENCOURAGE THE FEEDBACK

6074
03:54:31,663 --> 03:54:35,634
ON AREAS WE CAN DO BETTER WE

6075
03:54:35,634 --> 03:54:36,835
WANT TO CONTINUE TO GROW AND

6076
03:54:36,835 --> 03:54:41,073
RESPOND TO NEEDS OF COMMUNITY.

6077
03:54:41,073 --> 03:54:44,576
>> FANTASTIC. NEXT
QUESTION FOR

6078
03:54:44,576 --> 03:54:46,578
YOU. WHAT LESSONS WERE LEARNED

6079
03:54:46,578 --> 03:54:49,081
FROM OTHER REGISTRIES BEFORE

6080
03:54:49,081 --> 03:54:50,716
CEREBRAL PALSY REGISTRIES WERE

6081
03:54:50,716 --> 03:54:52,384
CREATED?

6082
03:54:52,384 --> 03:55:00,025
>> I THINK THE ADVICE OF
DR.

6083
03:55:00,025 --> 03:55:01,626
SHABEL IN TERMS OF

6084
03:55:01,626 --> 03:55:04,696
IMPLEMENTATION CANADA WAS REALLY

6085
03:55:04,696 --> 03:55:08,934
IMPORTANT. HE EMPHASIZED THE

6086
03:55:08,934 --> 03:55:10,669
FUNDING MODEL AND COST OF

6087
03:55:10,669 --> 03:55:13,038
RECRUITMENT MODEL, THAT IN

6088
03:55:13,038 --> 03:55:14,239
ADDITION TO MY PRIOR EXPERIENCE

6089
03:55:14,239 --> 03:55:16,508
WITH A HYDRO SYPHILOUS REGISTRY,

6090
03:55:16,508 --> 03:55:20,278
WHERE WE WERE USING CLINICAL

6091
03:55:20,278 --> 03:55:21,613
RESEARCH ASSISTANCE TO COLLECT

6092
03:55:21,613 --> 03:55:25,584
ALL DATA, THOSE TWO THINGS

6093
03:55:25,584 --> 03:55:27,419
INFORMED OUR EXPERIENCE THE

6094
03:55:27,419 --> 03:55:31,189
MOST. MOST OF OUR REG -- OUR

6095
03:55:31,189 --> 03:55:33,525
REGISTRIES QUITE DIFFERENT FROM

6096
03:55:33,525 --> 03:55:35,927
MORE POPULATION BASED SOCIALIZED

6097
03:55:35,927 --> 03:55:40,265
MEDICINE REGISTRIES CAPTURING

6098
03:55:40,265 --> 03:55:41,733
EPIDEMIOLOGICAL DATA SO THERE

6099
03:55:41,733 --> 03:55:42,701
WAS LEARNING FROM THOSE

6100
03:55:42,701 --> 03:55:45,270
EXPERIENCES OTHER THAN THE COST

6101
03:55:45,270 --> 03:55:46,171
INFRASTRUCTURE AND BURDEN OF

6102
03:55:46,171 --> 03:55:51,476
DATA COLLECTION.

6103
03:55:51,476 --> 03:55:54,346
>> FANTASTIC. THANK YOU.
GOING

6104
03:55:54,346 --> 03:55:57,282
BACK TO DR. RAMEY. COULD YOU

6105
03:55:57,282 --> 03:55:59,551
DISCUSS DOING RESEARCH WITH

6106
03:55:59,551 --> 03:56:01,119
RAPIDLY DEVELOPING CHILDREN AS

6107
03:56:01,119 --> 03:56:03,221
WE ALL KNOW THEY ARE

6108
03:56:03,221 --> 03:56:04,689
DEVELOPMENTS MOVING TARGET.

6109
03:56:04,689 --> 03:56:06,191
WHERE YOU NEED MORE

6110
03:56:06,191 --> 03:56:07,159
UNDERSTANDING OF CHANGE IN

6111
03:56:07,159 --> 03:56:10,095
BASELINE. 

6112
03:56:10,095 --> 03:56:12,197
>> IT IS FINAL. YOU CAN'T
STUDY

6113
03:56:12,197 --> 03:56:15,233
CHILDREN AND HAVE IT NOT

6114
03:56:15,233 --> 03:56:16,435
INFLUENCE DEVELOPMENT BUT THERE

6115
03:56:16,435 --> 03:56:20,038
IS NO DEVELOPMENT THAT OCCURS

6116
03:56:20,038 --> 03:56:21,740
WITHOUT A CONTEXT. I WONDER

6117
03:56:21,740 --> 03:56:23,408
ABOUT WHEN PEOPLE SAY WE ARE NOT

6118
03:56:23,408 --> 03:56:25,744
DOING A GOOD ENOUGH CHOUGH JOB

6119
03:56:25,744 --> 03:56:30,682
PREDICTING WHO IS GOING TO

6120
03:56:30,682 --> 03:56:32,350
DEVELOP OR SHOW CEREBRAL PALSY

6121
03:56:32,350 --> 03:56:34,586
IT MAY BE BECAUSE OF WHAT

6122
03:56:34,586 --> 03:56:41,493
HAPPENS AFTER THEY ARE IN MSCU.

6123
03:56:41,493 --> 03:56:43,495
MAY NOT BE WE ARE NOT PRECISE

6124
03:56:43,495 --> 03:56:47,032
ENOUGH, IT IS THIS DYNAMIC

6125
03:56:47,032 --> 03:56:52,871
INTERACTION CONSTANTLY CHANGES

6126
03:56:52,871 --> 03:56:54,306
THE CHILD. I DON'T THINK WE CAN

6127
03:56:54,306 --> 03:56:57,075
COMPLETELY SEPARATE IT. IT IS

6128
03:56:57,075 --> 03:56:59,444
IMPORTANT TO COMPARE TYPICALLY

6129
03:56:59,444 --> 03:57:01,146
DEVELOPING CHILDREN, CHILDREN

6130
03:57:01,146 --> 03:57:05,317
WITH DIAGNOSIS, THAT IS ONLY ONE

6131
03:57:05,317 --> 03:57:07,919
PERSPECTIVE. I WANT TO GO BACK,

6132
03:57:07,919 --> 03:57:11,356
IT IS CONTROVERSIAL BUT IN OUR

6133
03:57:11,356 --> 03:57:13,391
CLINICAL TRIALS, WE DO NOT

6134
03:57:13,391 --> 03:57:16,428
BELIEVE AND WE DO NOT ACCEPT THE

6135
03:57:16,428 --> 03:57:19,030
LIVED EXPERIENCE OR THE REPORT

6136
03:57:19,030 --> 03:57:20,699
OF PARENTS WE TREAT IT LIKE

6137
03:57:20,699 --> 03:57:24,536
ISN'T THAT NICE? I CAN TELL YOU

6138
03:57:24,536 --> 03:57:27,272
LEVEL OF REVIEWING GRANTS WE

6139
03:57:27,272 --> 03:57:28,874
DON'T GIVE IT THE KIND OF

6140
03:57:28,874 --> 03:57:30,842
IMPORTANCE. . SO I THINK WE NEED

6141
03:57:30,842 --> 03:57:34,212
TO BETTER LOOK AT WHAT ARE

6142
03:57:34,212 --> 03:57:36,848
EXPECTED TRAJECTORIES AND WHAT

6143
03:57:36,848 --> 03:57:39,551
IS TRANSFORMATIVE AND THERE MAY

6144
03:57:39,551 --> 03:57:41,753
BE AREAS IF WE KEEP TALKING

6145
03:57:41,753 --> 03:57:45,123
ABOUT THE IMPORTANCE OF OF

6146
03:57:45,123 --> 03:57:46,892
LOOKING AT FUNCTIONING

6147
03:57:46,892 --> 03:57:48,260
ENGAGEMENT PARTICIPATION, THERE

6148
03:57:48,260 --> 03:57:51,129
ARE GOING TO BE SUBJECTIVE

6149
03:57:51,129 --> 03:57:53,398
ASPECTS. WE HAVE TO SEE HOW DO

6150
03:57:53,398 --> 03:57:55,433
WE WEIGH THAT IN. THAT IS A

6151
03:57:55,433 --> 03:57:57,669
CHALLENGE FOR ALL OF MEDICINE. 

6152
03:57:57,669 --> 03:58:01,840
IT IS NOT UNIQUE TO THE

6153
03:58:01,840 --> 03:58:03,675
POPULATION OF INDIVIDUALS WHO

6154
03:58:03,675 --> 03:58:05,410
RECEIVE A LABEL AND THEY CHOOSE

6155
03:58:05,410 --> 03:58:09,481
TO USE THAT LABEL OR NOT OF

6156
03:58:09,481 --> 03:58:11,316
CEREBRAL PALSY. IT IS VERY

6157
03:58:11,316 --> 03:58:12,517
COMPLICATED TO MEASURE BECAUSE

6158
03:58:12,517 --> 03:58:16,188
YOU DON'T HAVE THE SAME TWO

6159
03:58:16,188 --> 03:58:17,656
TOOLS AVAILABLE AT DIFFERENT

6160
03:58:17,656 --> 03:58:19,925
AGES TO SAY ARE THEY -- HOW MUCH

6161
03:58:19,925 --> 03:58:23,228
BETTER, WE CAN'T QUANTIFY SOME

6162
03:58:23,228 --> 03:58:25,130
OF THE IMPORTANT GAINS UNLESS WE

6163
03:58:25,130 --> 03:58:28,800
ARE WILLING TO RECOGNIZE THIS

6164
03:58:28,800 --> 03:58:30,869
SUBJECTIVE INTERPRETATION OF

6165
03:58:30,869 --> 03:58:36,308
SOME OF OUR OBJECTIVE NUMERICAL

6166
03:58:36,308 --> 03:58:38,610
DATA. FASCINATING.

6167
03:58:38,610 --> 03:58:40,312
>> SO DR. MOULTON, A
QUESTION

6168
03:58:40,312 --> 03:58:43,548
FOR YOU, HOW DO WE ADAPT CD

6169
03:58:43,548 --> 03:58:44,616
COMMON DATA ELEMENTS TO THE

6170
03:58:44,616 --> 03:58:45,884
VIRTUAL REMOTE ENVIRONMENT IN AN

6171
03:58:45,884 --> 03:58:52,490
EFFICIENT MANNER? THIS IS A

6172
03:58:52,490 --> 03:58:53,158
PANDEMIC

6173
03:58:53,158 --> 03:58:54,893
>> I WOULD SAY THAT FOR A
LOT OF

6174
03:58:54,893 --> 03:58:56,628
THEM THERE IS NO ADAPTATION

6175
03:58:56,628 --> 03:58:58,296
REQUIRED AS SUCH IN THE SENSE

6176
03:58:58,296 --> 03:58:59,731
THAT YOU CAN PRETTY EASILY LOOK

6177
03:58:59,731 --> 03:59:02,000
IN THE NOTICE OF COPYRIGHTS

6178
03:59:02,000 --> 03:59:03,802
WHICH ARE NOT NECESSARILY

6179
03:59:03,802 --> 03:59:05,170
RELATED TO COPYRIGHT I HAVE

6180
03:59:05,170 --> 03:59:07,639
LEARNED BUT GOLD MINES OF

6181
03:59:07,639 --> 03:59:08,840
INFORMATION, THE CLIFF NOTES OF

6182
03:59:08,840 --> 03:59:10,575
THESE DIFFERENT ASSESSMENTS. YOU

6183
03:59:10,575 --> 03:59:12,744
CAN USE THAT AS AN OPPORTUNITY

6184
03:59:12,744 --> 03:59:14,846
TO SEE HAS IT BEEN VALIDATED OR

6185
03:59:14,846 --> 03:59:18,583
IS THAT AN OPPORTUNITY FOR US.  

6186
03:59:18,583 --> 03:59:20,352
SO CERTAINLY THIS IDEA OF MORE

6187
03:59:20,352 --> 03:59:23,855
REMOTE ASSESSMENT NOT ONLY IS

6188
03:59:23,855 --> 03:59:25,624
PANDEMIC PROOF AND HELPS IN

6189
03:59:25,624 --> 03:59:27,892
THESE TIMES OF GLOBAL

6190
03:59:27,892 --> 03:59:29,461
UNCERTAINTY BUT ALSO A GOOD

6191
03:59:29,461 --> 03:59:31,129
STRATEGY FOR IMPROVING THE

6192
03:59:31,129 --> 03:59:33,031
DIVERSITY OF OUR SAMPLE SET AS

6193
03:59:33,031 --> 03:59:35,266
NOTED BY SEVERAL OTHER SPEAKERS

6194
03:59:35,266 --> 03:59:38,770
DURING THE THIS WORKSHOP. BY

6195
03:59:38,770 --> 03:59:40,739
DIVERSIFYING THE WAY WE COLLECT

6196
03:59:40,739 --> 03:59:44,576
DATA IT PROBABLY WILL HELP US

6197
03:59:44,576 --> 03:59:47,512
MORE LONG RUN. THE KEY THOUGH IS

6198
03:59:47,512 --> 03:59:49,047
IF THERE ARE NEW TOOLS DEVELOPED

6199
03:59:49,047 --> 03:59:50,715
SPECIFICALLY WITH THIS IN MIND

6200
03:59:50,715 --> 03:59:53,618
WE KEEP UP WITH THAT ONCE

6201
03:59:53,618 --> 03:59:55,420
VALIDATED THEY CAN BE INTEGRATED

6202
03:59:55,420 --> 03:59:56,988
INTO THE COMMON DATA ELEMENTS. 

6203
03:59:56,988 --> 03:59:58,590
WE HAVE A LOT OF ELEMENTS THAT

6204
03:59:58,590 --> 04:00:02,560
ARE EXPLORATORY IN NATURE

6205
04:00:02,560 --> 04:00:04,062
BECAUSE THEY ARE MAYBE NOT SO

6206
04:00:04,062 --> 04:00:08,433
WELL VALIDATED, IN THIS SPECIFIC

6207
04:00:08,433 --> 04:00:11,302
POPULATION OR NEED A LITTLE BIT

6208
04:00:11,302 --> 04:00:13,238
MORE EVIDENCE BEHIND THEM AND

6209
04:00:13,238 --> 04:00:14,806
NEW TOOLS COULD BE INTEGRATED IN

6210
04:00:14,806 --> 04:00:18,677
A SIMILAR WAY.

6211
04:00:18,677 --> 04:00:21,713
>> FANTASTIC. THERE IS A
NEW

6212
04:00:21,713 --> 04:00:24,249
EFFORT AFOOT FROM FDAN AND

6213
04:00:24,249 --> 04:00:25,617
NUMBER OF OUR ORGANIZATIONS FOR

6214
04:00:25,617 --> 04:00:26,718
THESE CENTRALIZED CLINICAL

6215
04:00:26,718 --> 04:00:28,486
TRIALS WHICH HAS ONE OF THE

6216
04:00:28,486 --> 04:00:30,388
GOALS IS TO HAVE GREATER DEGREE

6217
04:00:30,388 --> 04:00:33,391
OF EQUITY IN TERMS OF

6218
04:00:33,391 --> 04:00:34,359
REPRESENTATION FROM ALL

6219
04:00:34,359 --> 04:00:35,727
DIFFERENT SEGMENTS OF THE

6220
04:00:35,727 --> 04:00:39,564
POPULATION IN THE U.S. AND THE

6221
04:00:39,564 --> 04:00:42,233
WORLD AS WELL. ONE MORE

6222
04:00:42,233 --> 04:00:43,802
INDIVIDUAL QUESTION, WE HAVE

6223
04:00:43,802 --> 04:00:47,138
GOOD NUMBER OF QUESTIONS ONE

6224
04:00:47,138 --> 04:00:47,939
MORE QUESTION FROM INDIVIDUAL

6225
04:00:47,939 --> 04:00:53,411
THEN DOING PANEL AND BACK

6226
04:00:53,411 --> 04:00:59,050
INDIVIDUALS COGNITIVE REST H.

6227
04:00:59,050 --> 04:01:01,119
ADAPTING TO THE NEW NIH DATA

6228
04:01:01,119 --> 04:01:04,322
SHARING REQUIREMENTS?

6229
04:01:04,322 --> 04:01:07,792
>> WE ARE DOING NUMBER OF
THINGS

6230
04:01:07,792 --> 04:01:11,363
TO BE ABLE TO ENABLE THAT BUT IN

6231
04:01:11,363 --> 04:01:14,265
GENERAL WHEN WE PLAN FOR STUDY

6232
04:01:14,265 --> 04:01:18,570
WE RECENTLY SUBMITTED STUDY

6233
04:01:18,570 --> 04:01:20,405
DIDN'T GET FUNDED BUT GOT

6234
04:01:20,405 --> 04:01:23,808
FEEDBACK. WE BUILT INTO THE PLAN

6235
04:01:23,808 --> 04:01:25,610
DATA SHARING AMPLE TIME FOR

6236
04:01:25,610 --> 04:01:29,347
THAT. WE WORK ON THE CPCDE

6237
04:01:29,347 --> 04:01:31,216
COMMITTEE WE HAVE TO SHARE LARGE

6238
04:01:31,216 --> 04:01:32,817
NUMBER OF REGISTRY ELEMENTS, WE

6239
04:01:32,817 --> 04:01:34,619
ARE ALSO ADAPTING OURS TO MAKE

6240
04:01:34,619 --> 04:01:38,423
IT SO THAT WE ARE CONSISTENT

6241
04:01:38,423 --> 04:01:41,025
WITH THAT. LASTLY TALK

6242
04:01:41,025 --> 04:01:42,427
DEIDENTIFIED DATABASE WHICH IS

6243
04:01:42,427 --> 04:01:44,829
NOT OPEN TO PUBLIC BUT TO SITES

6244
04:01:44,829 --> 04:01:46,598
MEMBERS OF THE NETWORK. WE ARE

6245
04:01:46,598 --> 04:01:49,601
DOING A LOT ON DATA SHARING

6246
04:01:49,601 --> 04:01:50,702
BECAUSE WE FEEL DATA CREATED

6247
04:01:50,702 --> 04:01:53,037
THROUGH TAXPAYER DOLLARS OR GOOD

6248
04:01:53,037 --> 04:01:55,573
WILL OF PHILANTHROPY SHOULD BE

6249
04:01:55,573 --> 04:01:59,577
USED TO ACCELERATE DISCOVERY.

6250
04:01:59,577 --> 04:02:01,179
>> GREAT. THANKS. THIS IS
GOING

6251
04:02:01,179 --> 04:02:03,882
TO BE A QUESTION FOR EVERYONE.

6252
04:02:03,882 --> 04:02:06,151
AND WE WILL START WITH YOU, DR.

6253
04:02:06,151 --> 04:02:08,219
RAMEY. BUILDING A TEAM THAT CAN

6254
04:02:08,219 --> 04:02:10,688
PRODUCE IMPACTFUL CLINICALLY

6255
04:02:10,688 --> 04:02:14,225
MEANINGFUL RESULTS. THIS IS ALSO

6256
04:02:14,225 --> 04:02:15,960
IMPORTANT TO OUR FAMILIES OUR

6257
04:02:15,960 --> 04:02:17,595
PATIENTS OUR RESEARCH

6258
04:02:17,595 --> 04:02:19,097
PARTICIPANTS HOW CAN WE MAKE IT

6259
04:02:19,097 --> 04:02:20,298
HOW DO YOU BUILD A TEAM THAT

6260
04:02:20,298 --> 04:02:24,369
WILL DO THAT? THIS IS FOR

6261
04:02:24,369 --> 04:02:25,270
EVERYONE.

6262
04:02:25,270 --> 04:02:26,671
>> I WOULD LOVE IT WOULD
BE A

6263
04:02:26,671 --> 04:02:30,341
DREAM IF WE HAVE A CP RESEARCH

6264
04:02:30,341 --> 04:02:33,077
NETWORK AKIN TO WONDERFUL ONES

6265
04:02:33,077 --> 04:02:37,816
WE HAVE SEEN IN NINDS AND EUNICE

6266
04:02:37,816 --> 04:02:39,684
KENNEDY SHRIVER NICHD. WHETHER

6267
04:02:39,684 --> 04:02:43,788
IT SHOULD BE BROADENED OR AGAIN

6268
04:02:43,788 --> 04:02:46,825
BECAUSE OF THE WAY WE DEFINE CPE

6269
04:02:46,825 --> 04:02:49,928
BUT IF WE DO THAT WE CAN BEGIN

6270
04:02:49,928 --> 04:02:51,496
TO LOOK AT THINGS, THOSE THAT

6271
04:02:51,496 --> 04:02:55,700
ARE IN THE CDEs FOR CP BUT WE

6272
04:02:55,700 --> 04:02:58,570
HAVE A NEW EFFORT THAT IS NOW

6273
04:02:58,570 --> 04:03:01,005
ENTERING THE PUBLIC DISCUSSION

6274
04:03:01,005 --> 04:03:03,842
PHASE, NEW SET OF CDEs FOR

6275
04:03:03,842 --> 04:03:05,143
REHABILITATION, I WORKED ON BOTH

6276
04:03:05,143 --> 04:03:07,045
OF THOSE ENDEAVORS AND THAT

6277
04:03:07,045 --> 04:03:08,379
TAKES CARE OR BEGINS TO TAKE

6278
04:03:08,379 --> 04:03:12,116
CARE OF THE ADULT WHICH WAS WE

6279
04:03:12,116 --> 04:03:15,920
WERE TORMENTED AT AACPDM WHEN WE

6280
04:03:15,920 --> 04:03:17,088
COULDN'T DEAL WITH ADULTS BUT

6281
04:03:17,088 --> 04:03:21,526
ONLY DEAL WITH ONE AGE RANGE AT

6282
04:03:21,526 --> 04:03:24,596
A TIME BUT THE NEW ONE ON REHALF

6283
04:03:24,596 --> 04:03:26,497
ADDRESSES IT BUT TO GET WHAT

6284
04:03:26,497 --> 04:03:29,234
REALLY MATTERS, I THINK WE NEED

6285
04:03:29,234 --> 04:03:34,539
WORKING GROUPS ON THAT. AND WE

6286
04:03:34,539 --> 04:03:36,774
NEED LOTS MORE PARTICIPANTS. IF

6287
04:03:36,774 --> 04:03:40,778
I SAY NOT JUST FROM MAINSTREAM

6288
04:03:40,778 --> 04:03:42,714
WONDERFUL TRADITIONAL ADVOCACY

6289
04:03:42,714 --> 04:03:46,050
GROUPS BUT WE NEED THAT FULL

6290
04:03:46,050 --> 04:03:48,786
DIVERSITY IN TERMS OF

6291
04:03:48,786 --> 04:03:50,688
GEOGRAPHIC, IN TERMS OF ALL THE

6292
04:03:50,688 --> 04:03:52,991
OTHER DIMENSIONS OF RACE AND

6293
04:03:52,991 --> 04:03:56,227
ETHNICITY AND HISTORICAL

6294
04:03:56,227 --> 04:03:59,063
OPPORTUNITIES FROM PEOPLE WHO

6295
04:03:59,063 --> 04:04:02,901
HAVEN'T BEEN AT OUR TABLES.  BUT

6296
04:04:02,901 --> 04:04:05,837
MEANINGFUL OUTCOMES ARE NOT THE

6297
04:04:05,837 --> 04:04:07,538
SAME FOR EVERYBODY. WE HAVE TO

6298
04:04:07,538 --> 04:04:09,974
THINK ABOUT THAT. BUT THE

6299
04:04:09,974 --> 04:04:14,746
QUESTION YOU JUST ASKED ADAM

6300
04:04:14,746 --> 04:04:16,314
ABOUT HAVING EVERYTHING BECOME

6301
04:04:16,314 --> 04:04:19,017
PUBLICLY AVAILABLE, IF WE REPORT

6302
04:04:19,017 --> 04:04:20,518
OUT ALL THE OUTCOME, ONE CAN

6303
04:04:20,518 --> 04:04:23,922
BEGIN TO LOOK AT THEM IN

6304
04:04:23,922 --> 04:04:25,556
DIFFERENT DIMENSIONS AND WHAT

6305
04:04:25,556 --> 04:04:29,394
YOU DO WITH DIVERSION RESULTS

6306
04:04:29,394 --> 04:04:32,196
TREATMENT EFFECT SOME THINGS BUT

6307
04:04:32,196 --> 04:04:33,765
NOT OTHER THINGS THEN BECOMES A

6308
04:04:33,765 --> 04:04:36,134
MATTER FOR COLLECTIVE ACTION

6309
04:04:36,134 --> 04:04:39,237
THAT TAKES IT BEYOND ONLY THE

6310
04:04:39,237 --> 04:04:41,005
IMPORTANCE OF SCIENCE AND

6311
04:04:41,005 --> 04:04:44,075
RIGOROUS DATA FROM WHICH WE THEN

6312
04:04:44,075 --> 04:04:45,410
WE MAKE COLLECTIVE DECISION

6313
04:04:45,410 --> 04:04:46,911
ABOUT ACTION.

6314
04:04:46,911 --> 04:04:51,816
>> THANK YOU, DR. STEELE. 

6315
04:04:51,816 --> 04:04:53,151
>> A MILLION THINGS COME
TO

6316
04:04:53,151 --> 04:04:55,787
MIND, SO ONE I THINK IS

6317
04:04:55,787 --> 04:04:57,689
SHORTENING OUR FEEDBACK LOOP ON

6318
04:04:57,689 --> 04:04:59,724
OUTCOMES, RIGHT NOW THESE

6319
04:04:59,724 --> 04:05:00,792
PROCESSES THAT YOU HAVE SEEN ARE

6320
04:05:00,792 --> 04:05:02,393
LONG AN MULTI-YEAR, IT MAKES

6321
04:05:02,393 --> 04:05:04,095
HARD TO INTEGRATE NEW IDEAS AND

6322
04:05:04,095 --> 04:05:07,131
TEST THEM OUT IN CLINIC AND IN

6323
04:05:07,131 --> 04:05:08,566
PRACTICE.  AND GIVEN

6324
04:05:08,566 --> 04:05:09,667
HETEROGENEITY OF INDIVIDUALS

6325
04:05:09,667 --> 04:05:12,737
WITH CP BUT ALSO INDIVIDUALIZED

6326
04:05:12,737 --> 04:05:16,107
RESPONSES THAT WE SEE. NEW

6327
04:05:16,107 --> 04:05:17,442
ADVANCES IN MACHINE LEARNING AND

6328
04:05:17,442 --> 04:05:20,044
OTHER METHODS MAKE IT EASIER FOR

6329
04:05:20,044 --> 04:05:22,280
US DEVIATE FROM PROTOCOLS TO TRY

6330
04:05:22,280 --> 04:05:27,051
NEW THINGS QUICKER AND FASTER. 

6331
04:05:27,051 --> 04:05:28,353
ANOTHER WE THINK ABOUT ENGINEERS

6332
04:05:28,353 --> 04:05:29,988
SPENDING MUCH TIME LOOKING AT

6333
04:05:29,988 --> 04:05:33,391
ENVIRONMENTAL AND SILOED

6334
04:05:33,391 --> 04:05:35,193
BARRIERS TO DISABILITY WITHIN

6335
04:05:35,193 --> 04:05:37,362
OUR PRACTICE AND HOW WE CAN

6336
04:05:37,362 --> 04:05:38,196
LIKEWISE WITH BE LEARNING FROM

6337
04:05:38,196 --> 04:05:40,698
AND INTEGRATING INNOVATIONS THAT

6338
04:05:40,698 --> 04:05:41,933
DISMANTLE ENVIRONMENTAL

6339
04:05:41,933 --> 04:05:44,068
BARRIERS:  AND I WOULD LOVE TO

6340
04:05:44,068 --> 04:05:48,006
SEE LIKE NIH AND NSF PARTNER

6341
04:05:48,006 --> 04:05:49,440
TOGETHER FOR INITIATIVES LIKE

6342
04:05:49,440 --> 04:05:52,176
SMART CONNECTED HEALTH, AND LOVE

6343
04:05:52,176 --> 04:05:54,779
TO SEE SIMILAR BETWEEN HIPPOAND

6344
04:05:54,779 --> 04:05:57,048
NIDLER TO GET AT THESE

6345
04:05:57,048 --> 04:05:57,982
ENVIRONMENTAL PARTICIPATION

6346
04:05:57,982 --> 04:06:00,485
BARRIERS FASTER.

6347
04:06:00,485 --> 04:06:02,186
>> THANK YOU, DR. MOULTON
YOUR

6348
04:06:02,186 --> 04:06:04,322
THOUGHTS. 

6349
04:06:04,322 --> 04:06:06,758
>> I HAD COUPLE OF THINGS
COME

6350
04:06:06,758 --> 04:06:09,761
TO MIND DEPENDING WHAT HAT

6351
04:06:09,761 --> 04:06:11,396
WEARING IN THE MOMENT, COMMON

6352
04:06:11,396 --> 04:06:12,964
DATA HE WILL ELEMENTS OR OTHERS

6353
04:06:12,964 --> 04:06:14,766
I LIKED HERS AN SHARONS.  THE

6354
04:06:14,766 --> 04:06:17,468
THINGS THAT COME TO MIND FOR ME

6355
04:06:17,468 --> 04:06:19,470
WOULD BE WHEN YOU ASKED BUILDING

6356
04:06:19,470 --> 04:06:21,272
A TEAM ENSURING THAT THE TEAM

6357
04:06:21,272 --> 04:06:23,307
HAS A MULTI-DISCIPLINARY NATURE.

6358
04:06:23,307 --> 04:06:26,310
I THINK THERE IS REALLY A LOT OF

6359
04:06:26,310 --> 04:06:28,646
VALUE TO BE GAINED HAVING

6360
04:06:28,646 --> 04:06:30,915
PERSPECTIVES WHETHER

6361
04:06:30,915 --> 04:06:32,917
PROFESSIONAL TRAINING, LIVED

6362
04:06:32,917 --> 04:06:35,486
EXPERIENCE AND CREATIVE SKILL

6363
04:06:35,486 --> 04:06:37,989
SETS, BEST THINGS COME OUT WITH

6364
04:06:37,989 --> 04:06:39,490
A LOT OF DIFFERENT FOLKS AROUND

6365
04:06:39,490 --> 04:06:41,726
THE TABLE TALKING OR PLANNING OR

6366
04:06:41,726 --> 04:06:43,394
TRYING THINGS, EXPERIMENTING

6367
04:06:43,394 --> 04:06:46,564
REALLY. AND THE OTHER THING THAT

6368
04:06:46,564 --> 04:06:47,999
CAME TO MIND REFLECTING ON THIS

6369
04:06:47,999 --> 04:06:50,301
WAS THE IDEA OF MENTORSHIP AND

6370
04:06:50,301 --> 04:06:52,303
SOME GRATITUDE TOWARDS ALL THOSE

6371
04:06:52,303 --> 04:06:53,871
THAT ARE ON THE CALL MENTORS TO

6372
04:06:53,871 --> 04:06:58,810
ME OVER TIME AND JUST REALLY

6373
04:06:58,810 --> 04:07:00,511
FINDING ENCOURAGING AND

6374
04:07:00,511 --> 04:07:01,646
ENTHUSIASM IN PEOPLE THAT ARE

6375
04:07:01,646 --> 04:07:03,481
MAYBE JUST GETTING INTO THE

6376
04:07:03,481 --> 04:07:07,018
FIELD. AND THINKING ABOUT WAYS

6377
04:07:07,018 --> 04:07:08,319
TO LEVERAGE THAT ENERGY. AND

6378
04:07:08,319 --> 04:07:12,557
THOSE NEW IDEAS AND NEW WAYS OF

6379
04:07:12,557 --> 04:07:13,591
THINKING ABOUT THINGS. IF I WERE

6380
04:07:13,591 --> 04:07:15,026
TO PUT ON THE COMMON DATA

6381
04:07:15,026 --> 04:07:16,494
ELEMENTS HAT FOR THIS ONE AN

6382
04:07:16,494 --> 04:07:17,962
EXAMPLE WE SOMETIMES USE IN THE

6383
04:07:17,962 --> 04:07:19,697
COURSES WHEN TEACHING PEOPLE

6384
04:07:19,697 --> 04:07:21,566
ABOUT THESE IS IF YOU HAVE A

6385
04:07:21,566 --> 04:07:24,268
MEDICAL STUDENT YOU ARE WORKING

6386
04:07:24,268 --> 04:07:25,837
WITH THAT MAYBE GETTING TO LEARN

6387
04:07:25,837 --> 04:07:27,872
ABOUT CEREBRAL PALSY INITIALLY

6388
04:07:27,872 --> 04:07:29,006
AND WONDERS GOOD OUTCOME

6389
04:07:29,006 --> 04:07:33,177
MEASURES TO USE.  KNOWING AND

6390
04:07:33,177 --> 04:07:35,446
SHARING THESE TOOLS, ACCELERATES

6391
04:07:35,446 --> 04:07:37,248
OUR ABILITY TO LEARN ABOUT THEM.

6392
04:07:37,248 --> 04:07:40,151
SO THAT WOULD BE ONE EXAMPLE IN

6393
04:07:40,151 --> 04:07:43,421
THE CDE WORLD.

6394
04:07:43,421 --> 04:07:44,956
>> THANK YOU, REPEAT THE

6395
04:07:44,956 --> 04:07:46,557
QUESTION QUICKLY. TIPS ON

6396
04:07:46,557 --> 04:07:48,259
BUILDING A TEAM THAT PRODUCE

6397
04:07:48,259 --> 04:07:50,061
IMPACTFUL AND CLINICALLY

6398
04:07:50,061 --> 04:07:56,267
MEANINGFUL RESULTS. MR. GROSS.

6399
04:07:56,267 --> 04:07:59,303
>> WHEN WE POLL THE
NETWORK WE

6400
04:07:59,303 --> 04:08:00,705
FIND ONE OF THE MOST VALUED AS%

6401
04:08:00,705 --> 04:08:04,509
IS HOW TRULY MULTI-DISCIPLINE IT

6402
04:08:04,509 --> 04:08:09,714
IS THE GROUP IS. SO I THINK

6403
04:08:09,714 --> 04:08:12,283
FINDING A GROUP OF CLINICIAN

6404
04:08:12,283 --> 04:08:13,518
RESEARCHERS AND PARTNERING WE

6405
04:08:13,518 --> 04:08:15,620
ARE MOVING OUR DATA COORDINATING

6406
04:08:15,620 --> 04:08:17,121
CENTER TO PIT, WE HAD GREAT

6407
04:08:17,121 --> 04:08:18,756
SUPPORT AT THE UNIVERSITY OF

6408
04:08:18,756 --> 04:08:20,725
UTAH, I THINK OUR SUPPORTED PIT

6409
04:08:20,725 --> 04:08:24,061
FOR PROVIDING SOME OF THAT

6410
04:08:24,061 --> 04:08:25,463
METHOD LOGICAL GUIDANCE REALLY

6411
04:08:25,463 --> 04:08:28,499
YOU GET THE RIGHT COMBINATION OF

6412
04:08:28,499 --> 04:08:29,667
METHODOLOGY AND REAL WORLD

6413
04:08:29,667 --> 04:08:31,369
CLINICAL EXPERIENCE ACROSS

6414
04:08:31,369 --> 04:08:35,406
MULTIPLE DISCIPLINES. FINDING

6415
04:08:35,406 --> 04:08:36,440
YOUR PEOPLE WITHIN SOMETHING

6416
04:08:36,440 --> 04:08:39,110
LIKE OUR NETWORK OR WITHIN

6417
04:08:39,110 --> 04:08:48,152
AACPDM IS REALLY KEY. RELATED

6418
04:08:48,152 --> 04:08:53,558
QUESTION IS WHAT ROLE IF ANY HAS

6419
04:08:53,558 --> 04:08:56,794
INDUSTRY OR COMPANIES PLAYED IN

6420
04:08:56,794 --> 04:08:58,229
YOUR HOW YOU FORMULATE YOUR

6421
04:08:58,229 --> 04:09:01,132
TEAMS, PUT YOUR TEAMS TOGETHER?

6422
04:09:01,132 --> 04:09:02,433
COMPANIES AN INDUSTRY ROLE IN

6423
04:09:02,433 --> 04:09:02,767
YOUR TEAM?

6424
04:09:02,767 --> 04:09:04,635
WE WILL START WITH SHARON DO YOU

6425
04:09:04,635 --> 04:09:07,905
WANT TO GO FIRST?

6426
04:09:07,905 --> 04:09:10,808
>> I DON'T HAVE A LOT OF

6427
04:09:10,808 --> 04:09:12,677
EXPERIENCE OR REALLY PRETTY

6428
04:09:12,677 --> 04:09:14,412
GROUNDED IN MULTI-DISCIPLINARY

6429
04:09:14,412 --> 04:09:17,481
RESEARCH CENTERS. FUNDED BY NIH

6430
04:09:17,481 --> 04:09:19,417
AND A LOT OF WONDERFUL TRAINING

6431
04:09:19,417 --> 04:09:22,920
PROGRAMS. THAT ARE

6432
04:09:22,920 --> 04:09:24,021
TRANSDISCIPLINARY FROM NIH WHERE

6433
04:09:24,021 --> 04:09:27,658
WE GET OUR STUDENTS AND

6434
04:09:27,658 --> 04:09:30,228
COLLEAGUES. WE HAVEN'T WORKED

6435
04:09:30,228 --> 04:09:34,765
CLOSELY WITH INDUSTRY MUCH.

6436
04:09:34,765 --> 04:09:36,234
>> KAT?

6437
04:09:36,234 --> 04:09:38,202
>> -- OBVIOUSLY AS WELL.
JUST --

6438
04:09:38,202 --> 04:09:41,405
I WOULD LOVE TO SEE THERE BEING

6439
04:09:41,405 --> 04:09:43,841
A MORE VIBRANT DIVERSE SET OF

6440
04:09:43,841 --> 04:09:45,443
INDUSTRIES THAT FOCUS AROUND

6441
04:09:45,443 --> 04:09:46,877
CEREBRAL PALSY. THERE IS

6442
04:09:46,877 --> 04:09:49,013
STARTING TO BE MORE OF THOSE

6443
04:09:49,013 --> 04:09:50,481
OFTEN SMALL COMPANIES BUBBLING

6444
04:09:50,481 --> 04:09:52,516
UP PROVIDING GREAT NEW

6445
04:09:52,516 --> 04:09:55,019
INNOVATIONS SO AS AN RESEARCHER

6446
04:09:55,019 --> 04:09:56,988
I CAN SEE ONE ROLE I PLAY IS TO

6447
04:09:56,988 --> 04:09:58,256
SUPPORT THOSE COMPANIES AND

6448
04:09:58,256 --> 04:09:59,890
PROVIDING UNBIASED AND

6449
04:09:59,890 --> 04:10:01,325
EXPERIENCES THAT NOT ONLY HELP

6450
04:10:01,325 --> 04:10:03,427
WITH REIMBURSEMENT BUT OTHER KEY

6451
04:10:03,427 --> 04:10:05,229
ISSUES. WE HAVE ALSO SEEN A

6452
04:10:05,229 --> 04:10:07,398
GREAT ENGAGEMENT FROM A LOT OF

6453
04:10:07,398 --> 04:10:08,432
THE LARGE TECH COMPANIES THAT

6454
04:10:08,432 --> 04:10:10,368
REALLY HAVE A STRONG FOCUS ON

6455
04:10:10,368 --> 04:10:12,303
NOT ONLY EDUCATION DISABILITY

6456
04:10:12,303 --> 04:10:13,704
STUDIES AND INCLUSIVE DESIGN

6457
04:10:13,704 --> 04:10:15,706
WHICH ARE JUST OUTSTANDING AND

6458
04:10:15,706 --> 04:10:18,142
BE GREAT MODELS FOR A LOT OF

6459
04:10:18,142 --> 04:10:21,045
GREATER RESEARCH COMMUNITY.

6460
04:10:21,045 --> 04:10:23,381
>> THANK YOU, THERESA.

6461
04:10:23,381 --> 04:10:26,884
>> UNIVERSAL DESIGN IS
WHAT CAME

6462
04:10:26,884 --> 04:10:30,421
TO MIND, WE CAN COLLABORATE

6463
04:10:30,421 --> 04:10:32,823
EARLY INCLUDE COMPANIES IN OUR

6464
04:10:32,823 --> 04:10:36,527
THINKING ABOUT GAPS AND AREAS TO

6465
04:10:36,527 --> 04:10:38,729
ATHAT IT NOT ONLY SERVE IT IS

6466
04:10:38,729 --> 04:10:41,565
FOLKS WE KEEN TO MAKE IMPACT ON

6467
04:10:41,565 --> 04:10:43,134
THAT ARE LIVING WITH CEREBRAL

6468
04:10:43,134 --> 04:10:46,637
PALSY BUT EVERYBODY ALL OF US

6469
04:10:46,637 --> 04:10:48,039
CAN BENEFIT BY MAKING OUR WORLD

6470
04:10:48,039 --> 04:10:51,809
A LITTLE EASIER TO NAVIGATE WHAT

6471
04:10:51,809 --> 04:10:53,044
KAT WAS SAYING ABOUT

6472
04:10:53,044 --> 04:10:55,913
ENVIRONMENTAL INFLUENCES AND THE

6473
04:10:55,913 --> 04:10:56,847
ROLE THEY PLAY IN OUR CAPACITY

6474
04:10:56,847 --> 04:11:01,018
TO LIVE OUR GREATEST LIVES.  

6475
04:11:01,018 --> 04:11:02,053
THAT IS SOMETHING WE DON'T

6476
04:11:02,053 --> 04:11:04,055
NECESSARILY DO WELL IN ACADEMIA

6477
04:11:04,055 --> 04:11:09,794
IS HARVEST LOWER AND MAYBE

6478
04:11:09,794 --> 04:11:10,394
METHODICAL IN THE WAY WE DO

6479
04:11:10,394 --> 04:11:11,929
THINGS IT MIGHT BE A BARRIER TO

6480
04:11:11,929 --> 04:11:14,365
EARLY ADAPTATION OR ADOPTION OF

6481
04:11:14,365 --> 04:11:16,634
GREAT IDEAS THAT COULD MAKE A

6482
04:11:16,634 --> 04:11:20,304
REAL IMPACT. SO IT IS A BALANCE

6483
04:11:20,304 --> 04:11:21,973
OF COURSE. THAT WOULD BE AN AREA

6484
04:11:21,973 --> 04:11:26,677
WE LEARN A LOT FROM INDUSTRY.

6485
04:11:26,677 --> 04:11:28,713
>> PAUL ROW INDUSTRIES AND

6486
04:11:28,713 --> 04:11:29,146
REGISTRIES.

6487
04:11:29,146 --> 04:11:31,549
>> WE SPENT FIRST FIVE
YEARS

6488
04:11:31,549 --> 04:11:33,684
STIFF ARMING INDUSTRY BECAUSE WE

6489
04:11:33,684 --> 04:11:37,154
WANTED TO BUILD INDEPENDENT

6490
04:11:37,154 --> 04:11:39,991
BRAND SO WE WERE CAUTIOUS BUT WE

6491
04:11:39,991 --> 04:11:41,992
BELIEVE PARTNERSHIP IS CRITICAL

6492
04:11:41,992 --> 04:11:44,295
GOING FORWARD FROM

6493
04:11:44,295 --> 04:11:45,796
INFRASTRUCTURE PARTNERSHIPS LIKE

6494
04:11:45,796 --> 04:11:50,000
DATA VAN BOTH FUNDING OR

6495
04:11:50,000 --> 04:11:51,669
SCIENTIFIC CLAN RATION

6496
04:11:51,669 --> 04:11:53,904
PARTNERSHIPS WITH PHARMA AND WE

6497
04:11:53,904 --> 04:11:55,873
SEE EXTENDING THAT. WE HAVE HAD

6498
04:11:55,873 --> 04:11:58,743
JUST INDEPENDENT FUNDING SUPPORT

6499
04:11:58,743 --> 04:12:05,082
FROM DEVICE COMPANIES, AND SO WE

6500
04:12:05,082 --> 04:12:06,183
SEE A RANGE OF OPPORTUNITIES AND

6501
04:12:06,183 --> 04:12:08,586
WE ARE DEVELOPING THEM,

6502
04:12:08,586 --> 04:12:09,754
DEVELOPING STANDARD OPERATING

6503
04:12:09,754 --> 04:12:11,655
PROCEDURE HOW WE PARTNER WITH

6504
04:12:11,655 --> 04:12:14,191
INDUSTRY TO FIT WITH OUR VALUES

6505
04:12:14,191 --> 04:12:16,327
DO THINGS THAT ARE VALUABLE FOR

6506
04:12:16,327 --> 04:12:18,062
THE COMMUNITY. 

6507
04:12:18,062 --> 04:12:20,030
>> GREAT. THANK YOU.
SHARON DO

6508
04:12:20,030 --> 04:12:22,366
YOU WANT TO ADD SOMETHING?

6509
04:12:22,366 --> 04:12:25,736
>> ONE THING I THINK THIS
COULD

6510
04:12:25,736 --> 04:12:27,538
BRING INDUSTRY IN AND HELP US

6511
04:12:27,538 --> 04:12:32,476
WITH THE ADULT RANGE OF OUTCOMES

6512
04:12:32,476 --> 04:12:36,747
AND QUALITY OF LIFE. DO WE ALL

6513
04:12:36,747 --> 04:12:39,617
REMEMBER WHEN NIH DIDN'T REQUIRE

6514
04:12:39,617 --> 04:12:41,819
WOMEN IN TRIALS? YOU NOW HAVE TO

6515
04:12:41,819 --> 04:12:45,489
DO IT AND ADDRESS THE RACIAL AND

6516
04:12:45,489 --> 04:12:48,359
ETHNIC DIVERSITY WHAT IF NIH

6517
04:12:48,359 --> 04:12:49,493
REQUIRED ANYONE WHO EXCLUDES

6518
04:12:49,493 --> 04:12:51,762
PEOPLE WITH DISABILITIES HAS TO

6519
04:12:51,762 --> 04:12:53,697
JUSTIFY WHY YOU ARE NOT

6520
04:12:53,697 --> 04:12:55,499
RECRUITING THEM IN TO YOUR

6521
04:12:55,499 --> 04:12:57,301
TRIALS OF EVERYTHING ELSE

6522
04:12:57,301 --> 04:12:59,236
RELATED TO HEALTH AND DISEASE,

6523
04:12:59,236 --> 04:13:01,672
SO ALL THE NEW TREATMENTS

6524
04:13:01,672 --> 04:13:04,241
DEVELOP YOU NAME THE TOPIC FROM

6525
04:13:04,241 --> 04:13:06,243
DIABETES AND CANCER ALL THE

6526
04:13:06,243 --> 04:13:08,746
THINGS THAT AFFECT THE

6527
04:13:08,746 --> 04:13:10,181
POPULATION GATHERED ABOUT THESE

6528
04:13:10,181 --> 04:13:12,082
TWO DAYS, THOSE INDIVIDUALS

6529
04:13:12,082 --> 04:13:15,653
AREN'T IN THE TRIALS. CAN WE GET

6530
04:13:15,653 --> 04:13:18,289
NIH TO REQUIRE ADEQUATE

6531
04:13:18,289 --> 04:13:19,924
REPRESENTATION, MIGHT BE

6532
04:13:19,924 --> 04:13:21,826
OVERSAMPLING OF CHILDREN AND

6533
04:13:21,826 --> 04:13:24,528
ADULTS WITH CP AND OTHER

6534
04:13:24,528 --> 04:13:26,897
DISABILITIES IN ALL OF OUR

6535
04:13:26,897 --> 04:13:29,600
STUDIES, THAT WILL BEGIN TO GROW

6536
04:13:29,600 --> 04:13:30,968
DATABASE FOR THINGS LIKE COMMON

6537
04:13:30,968 --> 04:13:33,137
DATA ELEMENTS AND WORK THAT PAUL

6538
04:13:33,137 --> 04:13:37,641
HAS DONE WITH REGISTRIES. WOULD

6539
04:13:37,641 --> 04:13:39,243
REALLY ACCELERATE HOW QUICKLY WE

6540
04:13:39,243 --> 04:13:41,011
CAN LEARN RATHER THAN SAYING IT

6541
04:13:41,011 --> 04:13:43,781
WILL TAKE US EXTRA TIME AND

6542
04:13:43,781 --> 04:13:46,584
MONEY TO INCLUDE A PERSON WHO

6543
04:13:46,584 --> 04:13:51,388
CANNOT DO A B C. THAT IS WHY IN

6544
04:13:51,388 --> 04:13:53,924
OTHER WORDS EXPEDIENCE SHOULDN'T

6545
04:13:53,924 --> 04:13:56,060
BE A REASON FOR HUMAN BEINGS OUT

6546
04:13:56,060 --> 04:13:58,496
OF ALL OF O YOU ARE RESEARCH AND

6547
04:13:58,496 --> 04:14:01,398
WE EXCLUDE INDIVIDUALS WITH

6548
04:14:01,398 --> 04:14:04,335
DISABILITY SYSTEMATICALLY AND IT

6549
04:14:04,335 --> 04:14:04,702
IS WRONG.

6550
04:14:04,702 --> 04:14:06,637
>> GREAT.  THANK YOU FOR
THE

6551
04:14:06,637 --> 04:14:10,774
THOUGHTS. SO ONE MORE GROUP

6552
04:14:10,774 --> 04:14:13,077
QUESTION THEN WE WILL GO BACK TO

6553
04:14:13,077 --> 04:14:14,845
ASKING INDIVIDUALS. SO THE

6554
04:14:14,845 --> 04:14:16,614
QUESTION IS WHAT ADVICE WOULD

6555
04:14:16,614 --> 04:14:18,249
YOU GIVE TO JUNIOR RESEARCHERS

6556
04:14:18,249 --> 04:14:24,688
WHO ARE COMING INTO THIS FIELD? 

6557
04:14:24,688 --> 04:14:26,724
CEREBRAL PALSY? SHARON YOU CAN

6558
04:14:26,724 --> 04:14:27,091
GO FIRST AGAIN.

6559
04:14:27,091 --> 04:14:28,826
>> IT IS THE MOST EXCITING
AND

6560
04:14:28,826 --> 04:14:33,130
-- IF THE PERSON LIKES REALLY

6561
04:14:33,130 --> 04:14:37,935
DIFFICULT TO SOLVE PROBLEMS AND

6562
04:14:37,935 --> 04:14:39,303
HOE AREN'T DIFFICULT AT ALL YOU

6563
04:14:39,303 --> 04:14:42,473
WANT TO SOLVE AMAZINGLY

6564
04:14:42,473 --> 04:14:45,075
COMPLICATED PROBLEM, AND BE

6565
04:14:45,075 --> 04:14:48,546
INTELLECTUALLY TURNED ON AND

6566
04:14:48,546 --> 04:14:54,051
ALSO GET UNBELIEVABLE THANKS

6567
04:14:54,051 --> 04:14:56,086
FROM INDIVIDUALS WITH LIVED

6568
04:14:56,086 --> 04:14:59,089
EXPERIENCE OVER TIME AND I JUST

6569
04:14:59,089 --> 04:15:05,296
LOVE CREATIVE WAY KAT FORWARD

6570
04:15:05,296 --> 04:15:06,664
WHEN BEST IDEAS DON'T WORK AND

6571
04:15:06,664 --> 04:15:08,732
BELIEVE ME SOME OF THEM DON'T,

6572
04:15:08,732 --> 04:15:11,001
WE LEARN ANYONE WHO LIKES TO

6573
04:15:11,001 --> 04:15:12,636
LEARN YOU CANNOT FIND ANYTHING

6574
04:15:12,636 --> 04:15:14,238
MORE STIMULATING THAN COMING

6575
04:15:14,238 --> 04:15:17,875
INTO THE FIELD OF WORKING WITH

6576
04:15:17,875 --> 04:15:20,644
INDIVIDUALS WHO DON'T FIT

6577
04:15:20,644 --> 04:15:22,746
TYPICALLY DEVELOPING. IT IS SO

6578
04:15:22,746 --> 04:15:25,549
THRILLING AND I SEE A LOT OF

6579
04:15:25,549 --> 04:15:27,651
PEOPLE SHY AWAY BECAUSE THEY

6580
04:15:27,651 --> 04:15:31,188
HEAR HOW COMPETITIVE FUNDING IS,

6581
04:15:31,188 --> 04:15:32,656
EVERYTHING GETS REJECTED, THEY

6582
04:15:32,656 --> 04:15:35,993
ARE CRITICIZED AND IF WE CAN

6583
04:15:35,993 --> 04:15:37,695
HELP THEM SAY IT IS WORTH

6584
04:15:37,695 --> 04:15:40,497
DEVELOPING A VERY THICK SKIN TO

6585
04:15:40,497 --> 04:15:43,033
LISTEN TO AND LEARN FROM ALL

6586
04:15:43,033 --> 04:15:44,401
POST CHRIS SCHISMS NOT ALL WHICH

6587
04:15:44,401 --> 04:15:46,804
ARE CORRECT BUT SOME WHICH ARE.

6588
04:15:46,804 --> 04:15:48,606
AND STAY WITH IT, IT IS -- AND

6589
04:15:48,606 --> 04:15:51,675
THE COMMUNITY OF PEOPLE

6590
04:15:51,675 --> 04:15:53,677
REPRESENTED BY PEOPLE YESTERDAY

6591
04:15:53,677 --> 04:15:55,846
AND TODAY IN THE AUDIENCE, ARE

6592
04:15:55,846 --> 04:15:57,414
JUST SUCH WONDERFUL HUMAN

6593
04:15:57,414 --> 04:15:59,450
BEINGS, I CAN'T THINK OF HAVING

6594
04:15:59,450 --> 04:16:03,554
HAD A MORE REWARDING CAREER. SO

6595
04:16:03,554 --> 04:16:05,255
IT IS THAT EXCITEMENT AND WE

6596
04:16:05,255 --> 04:16:06,857
HAVE TO NOT SCARE THEM AWAY AND

6597
04:16:06,857 --> 04:16:10,794
I THINK WE HAVE TO BE WILLING TO

6598
04:16:10,794 --> 04:16:13,230
TOLERATE MORE MISTAKES. OUR

6599
04:16:13,230 --> 04:16:14,264
FUNDING SITUATION IS A CONCERN

6600
04:16:14,264 --> 04:16:16,200
AND WE ARE GOING TO GET MORE

6601
04:16:16,200 --> 04:16:18,836
MONEY TO DO THIS ONLY IF THEY

6602
04:16:18,836 --> 04:16:19,470
COLLABORATE AND WORK WITH ONE

6603
04:16:19,470 --> 04:16:23,540
ANOTHER. INSTEAD OF COMPETE

6604
04:16:23,540 --> 04:16:25,776
WITHIN OUR OWN FIELD.

6605
04:16:25,776 --> 04:16:30,114
>> KAT. SHOULD I -- WHAT
ADVISE

6606
04:16:30,114 --> 04:16:30,247
--

6607
04:16:30,247 --> 04:16:32,583
>> ONE IS JUST THE
COMMUNITY IS

6608
04:16:32,583 --> 04:16:34,051
WONDERFUL AND THAT MY ADVICE

6609
04:16:34,051 --> 04:16:35,853
WOULD BE TO EMBED YOURSELF

6610
04:16:35,853 --> 04:16:39,289
WITHIN THE COMMUNITY. TO BROADEN

6611
04:16:39,289 --> 04:16:40,958
IT TO MANY OF THE OTHER

6612
04:16:40,958 --> 04:16:42,760
PEDIATRIC DISABILITIES AS WELL. 

6613
04:16:42,760 --> 04:16:44,194
PEDIATRIC AND ADULT DISABILITIES

6614
04:16:44,194 --> 04:16:45,529
ACROSS THE LIFE SPAN FROM THE

6615
04:16:45,529 --> 04:16:47,531
BEGINNING, THE DEEPER YOU ARE

6616
04:16:47,531 --> 04:16:49,767
EMBEDDED THE EASIER TO TRANSLATE

6617
04:16:49,767 --> 04:16:51,869
EASIER TO IT RATE AND

6618
04:16:51,869 --> 04:16:53,370
FUNDAMENTALLY BE UNDERSTANDING

6619
04:16:53,370 --> 04:16:55,973
THE PROBLEM AND THE SCIENCE

6620
04:16:55,973 --> 04:16:57,007
BETTER. MORE FUN TO WORK WITH

6621
04:16:57,007 --> 04:17:00,878
EVERYONE.

6622
04:17:00,878 --> 04:17:01,578
>> THERESA.

6623
04:17:01,578 --> 04:17:03,647
>> I WOULD LIKE TO SAY I'M
THE

6624
04:17:03,647 --> 04:17:08,285
YOUNG RESEARCHER NO LONGER

6625
04:17:08,285 --> 04:17:12,423
ACCURATE. MY TWO THINGS THAT I

6626
04:17:12,423 --> 04:17:13,991
WOULD BE THINKING ABOUT HERE

6627
04:17:13,991 --> 04:17:16,694
WOULD BE ALONG THE LINES OF WHAT

6628
04:17:16,694 --> 04:17:18,262
SHARING KAT AND SHARON MADE

6629
04:17:18,262 --> 04:17:19,530
FRIENDS BECAUSE IT IS MORE FUN

6630
04:17:19,530 --> 04:17:21,665
TO DO THIS WITH OTHER PEOPLE.

6631
04:17:21,665 --> 04:17:23,734
AND WE CAN ACHIEVE MORE WORKING

6632
04:17:23,734 --> 04:17:25,803
TOGETHER. THE OTHER THING WOULD

6633
04:17:25,803 --> 04:17:29,406
BE TO REMAIN CURIOUS, ONE OF THE

6634
04:17:29,406 --> 04:17:31,742
MOST CHALLENGING THINGS YOU CAN

6635
04:17:31,742 --> 04:17:33,043
DO IS IS FIND YOURSELF IN A

6636
04:17:33,043 --> 04:17:33,877
POSITION WHERE YOU KNOW

6637
04:17:33,877 --> 04:17:38,716
SOMETHING. IT TAKES CURIOSITY

6638
04:17:38,716 --> 04:17:41,085
OUT OF SITUATION, WE ARE BLINDED

6639
04:17:41,085 --> 04:17:43,620
TO POTENTIAL OF OTHER SOLUTIONS,

6640
04:17:43,620 --> 04:17:44,922
OTHER IDEAS AND THINGS THAT

6641
04:17:44,922 --> 04:17:48,192
MIGHT MEAN WE ARE WRONG. I AM

6642
04:17:48,192 --> 04:17:49,460
WRONG ABOUT A LOT OF THINGS, SO

6643
04:17:49,460 --> 04:17:52,296
I TRY TO REMAIN CURIOUS WHAT

6644
04:17:52,296 --> 04:17:55,966
MORE IS OUT THERE AND I THINK

6645
04:17:55,966 --> 04:17:58,469
THAT IS A GOOD IDEA FOR ALL

6646
04:17:58,469 --> 04:17:59,536
RESEARCHERS BUT YOUNG

6647
04:17:59,536 --> 04:18:00,671
RESEARCHERS TO KEEP IN MIND TO

6648
04:18:00,671 --> 04:18:03,507
ANSWER YOUR QUESTION. 

6649
04:18:03,507 --> 04:18:05,175
>> WHAT ADVICE WOULD YOU
GIVE?

6650
04:18:05,175 --> 04:18:07,544
>> ENCOURAGE PEOPLE TO
START

6651
04:18:07,544 --> 04:18:10,114
WITH FINDING A PROBLEM IMPORTANT

6652
04:18:10,114 --> 04:18:13,484
TO COMMUNITY, THE RESEARCH

6653
04:18:13,484 --> 04:18:16,620
PAPER, OVERLAP THAT WITH

6654
04:18:16,620 --> 04:18:18,989
SYSTEMATIC REVIEW AND LOOK FOR

6655
04:18:18,989 --> 04:18:22,159
THINGS MORE EVIDENCE NEEDS TO BE

6656
04:18:22,159 --> 04:18:24,161
GENERATED FOR. I FIND COMMUNITY

6657
04:18:24,161 --> 04:18:25,863
PARTNERS IN ADDITION TO LOOKING

6658
04:18:25,863 --> 04:18:30,434
AT WHAT THE COMMUNITY HAS

6659
04:18:30,434 --> 04:18:33,570
DERIVED. , I SEEK TO FIND A

6660
04:18:33,570 --> 04:18:36,640
MENTOR IF BASIC TRANSLATIONAL OR

6661
04:18:36,640 --> 04:18:39,343
CLINICAL RESEARCH THROUGH AACPN

6662
04:18:39,343 --> 04:18:43,747
OR CPRN, IF YOU CAN STEER YOUR

6663
04:18:43,747 --> 04:18:46,683
CAREER, LAND AT CPRN CENTER YOU

6664
04:18:46,683 --> 04:18:49,052
ACCESS LOT OF DATA TO HELP YOU

6665
04:18:49,052 --> 04:18:53,023
AND PARTNERS TO HELP YOU IN

6666
04:18:53,023 --> 04:18:53,957
GRANT OPPORTUNITIES. AND

6667
04:18:53,957 --> 04:18:55,125
MENTORSHIPS. 

6668
04:18:55,125 --> 04:18:58,295
>> THANK YOU. NOW
INDIVIDUAL

6669
04:18:58,295 --> 04:18:59,563
QUESTIONS, FIRST QUESTION IS

6670
04:18:59,563 --> 04:19:01,131
GOING TO BE FOR KAT. DO YOU DO

6671
04:19:01,131 --> 04:19:04,902
RESEARCH ON ACCESSIBLE

6672
04:19:04,902 --> 04:19:05,836
PLAYGROUNDS?

6673
04:19:05,836 --> 04:19:11,475
>> NOT YET. FUN TOPIC AND

6674
04:19:11,475 --> 04:19:13,744
THERESA'S QUOTE WILL BE -- HER

6675
04:19:13,744 --> 04:19:16,046
LAST RESPONSE ER MINED ME OF THE

6676
04:19:16,046 --> 04:19:17,581
POST IT NOTE FROM ONE OF THE

6677
04:19:17,581 --> 04:19:19,550
CLINICAL PARTNERS WHO IT RATES

6678
04:19:19,550 --> 04:19:21,051
REMEMBER NO ONE INCLUDING US

6679
04:19:21,051 --> 04:19:23,620
KNOWS ANYTHING WHEN WE TALK

6680
04:19:23,620 --> 04:19:24,655
ABOUT CEREBRAL PALSY. I ALWAYS

6681
04:19:24,655 --> 04:19:26,456
KEEP THAT AS REMINDER. YOU MAY

6682
04:19:26,456 --> 04:19:28,792
SEE IT DECEMBER COURAGE -- AT

6683
04:19:28,792 --> 04:19:32,262
THIS COURAGING BUT IT IS

6684
04:19:32,262 --> 04:19:33,831
ENCOURAGING HOW MUCH BRAIN POWER

6685
04:19:33,831 --> 04:19:36,233
AND AWESOME COLLABORATION. SO

6686
04:19:36,233 --> 04:19:39,436
SHE REMIND MED OF THAT. THEN AS

6687
04:19:39,436 --> 04:19:40,537
FOR PLAYGROUNDS WE ARE LUCKY

6688
04:19:40,537 --> 04:19:43,006
HERE IN SEATTLE WE NOT ONLY HAVE

6689
04:19:43,006 --> 04:19:45,242
GREAT NETWORK OF PLAYGROUNDS BUT

6690
04:19:45,242 --> 04:19:48,078
WE HAVE CHILDREN'S PLAYGROUND

6691
04:19:48,078 --> 04:19:50,247
GARDEN AND VARIETY OF OTHERS AND

6692
04:19:50,247 --> 04:19:51,248
ONE OTHER CONSTRUCTED HERE,

6693
04:19:51,248 --> 04:19:52,382
SEATTLE CHILDREN'S HOSPITAL. IN

6694
04:19:52,382 --> 04:19:53,917
TERMS OF RESEARCH WE HAVE NOT

6695
04:19:53,917 --> 04:19:56,620
DONE ANY YET, WE HAVE AN

6696
04:19:56,620 --> 04:19:58,889
ORGANIZATION ACCESSIBLE DESIGN

6697
04:19:58,889 --> 04:20:01,191
AND PLAY TECHNOLOGY THAT ACCEPTS

6698
04:20:01,191 --> 04:20:02,426
DESIGN CHALLENGES AND WE HAVE

6699
04:20:02,426 --> 04:20:03,694
GROUPS OF ENGINEERS WORK ON

6700
04:20:03,694 --> 04:20:05,963
PROJECTS ALL YEAR. SO ANYONE CAN

6701
04:20:05,963 --> 04:20:09,633
SUBMIT A PROJECT ON THERE. I SAW

6702
04:20:09,633 --> 04:20:12,202
IN THE Q&A LINK TO YOUR

6703
04:20:12,202 --> 04:20:13,103
ORGANIZATION YOU WORK WITH AND

6704
04:20:13,103 --> 04:20:14,805
DEFINITELY CHECK THAT OUT.  IT

6705
04:20:14,805 --> 04:20:18,041
IS DEFINITELY THE MORE WE TRY TO

6706
04:20:18,041 --> 04:20:19,710
GET OUT TO THE ENVIRONMENT AND

6707
04:20:19,710 --> 04:20:20,944
THINKING MORE ABOUT THE

6708
04:20:20,944 --> 04:20:22,045
PARTICIPATION AND ENVIRONMENTAL

6709
04:20:22,045 --> 04:20:24,081
BARRIERS INCLUDING INITIATIVES

6710
04:20:24,081 --> 04:20:26,149
LIKE ACCESS MAPS AND PROJECT

6711
04:20:26,149 --> 04:20:30,420
SIDE WALK, TO UNDERSTAND

6712
04:20:30,420 --> 04:20:32,089
ACCESSIBILITY, FOR EXAMPLE WITH

6713
04:20:32,089 --> 04:20:34,625
OUR GO BABY GO YOU GET GREATER

6714
04:20:34,625 --> 04:20:37,160
ACTIVITY IF YOU ARE CLOSER TO A

6715
04:20:37,160 --> 04:20:38,295
PLAYGROUND OR PARK WITH

6716
04:20:38,295 --> 04:20:40,397
ACCESSIBLE SIDE WALKS TO GET TO,

6717
04:20:40,397 --> 04:20:42,933
ALL REALLY FITS TOGETHER.  NEXT

6718
04:20:42,933 --> 04:20:44,034
FUZZOR PUZZLE. 

6719
04:20:44,034 --> 04:20:46,203
>> FASCINATING. THIS
QUESTION IS

6720
04:20:46,203 --> 04:20:47,304
FOR ANYONE WHO WANTS TO TAKE IT,

6721
04:20:47,304 --> 04:20:49,006
DO YOU SEE DEVELOPMENTAL

6722
04:20:49,006 --> 04:20:51,408
COORDINATION DISORDER BEING

6723
04:20:51,408 --> 04:20:52,409
INCLUDED WITH CEREBRAL PALSY

6724
04:20:52,409 --> 04:20:53,644
RESEARCH IN THE FUTURE, THIS

6725
04:20:53,644 --> 04:20:55,145
POPULATION RARELY GETS DIAGNOSED

6726
04:20:55,145 --> 04:20:56,513
OR TREATED IN THE U.S. BUT

6727
04:20:56,513 --> 04:20:58,415
STUDIES SHOW IT MAYBE THREE

6728
04:20:58,415 --> 04:21:01,084
TIMES MORE COMMON IN CEREBRAL

6729
04:21:01,084 --> 04:21:08,792
PALSY IN THE PRETERM POPULATION 

6730
04:21:08,792 --> 04:21:10,928
>> ONE THING WE HAVE BEEN
DOING

6731
04:21:10,928 --> 04:21:13,997
ESPECIALLY WITH OUR EARLY STUDY,

6732
04:21:13,997 --> 04:21:15,499
MAKE THE INCLUSION CRITERIA AS

6733
04:21:15,499 --> 04:21:18,368
BROAD AS POSSIBLE, THIS IS ONE

6734
04:21:18,368 --> 04:21:20,470
REASON WHERE SEE TBI AND STROKE.

6735
04:21:20,470 --> 04:21:23,540
FOR SOME INTERVENTIONS TAKING

6736
04:21:23,540 --> 04:21:25,208
THAT INCLUSIVE AND I FORGET ONE

6737
04:21:25,208 --> 04:21:29,546
MENTIONED WITH HIE AND OTHER

6738
04:21:29,546 --> 04:21:31,581
PREEMIE DIAGNOSIS WHEN WRITING

6739
04:21:31,581 --> 04:21:34,818
IRB AND DESIGNING STUDIES WE CAN

6740
04:21:34,818 --> 04:21:36,720
LEARN MORE AND PARSE DIFFERENCES

6741
04:21:36,720 --> 04:21:37,888
BETWEEN THESE GROUPS IF YOU

6742
04:21:37,888 --> 04:21:40,857
CREATE A MORE INCLUSIVE

6743
04:21:40,857 --> 04:21:41,792
UMBRELLA. . MAYBE TWEAK YOUR

6744
04:21:41,792 --> 04:21:43,760
PROTOCOL A BIT BUT WE HAVE THE

6745
04:21:43,760 --> 04:21:45,429
TOOLS AND TECHNIQUES NOW TO

6746
04:21:45,429 --> 04:21:47,831
PARSE APART DIFFERENT

6747
04:21:47,831 --> 04:21:50,734
DEVELOPMENTAL EFFECTS AND WE TRY

6748
04:21:50,734 --> 04:21:53,770
TO BE INCLUSIVE AS POSSIBLE. 

6749
04:21:53,770 --> 04:22:00,644
>> GREAT. CAN ALL OF YOU
COMMENT

6750
04:22:00,644 --> 04:22:02,512
ON SILO AN REHABILITATION. WE

6751
04:22:02,512 --> 04:22:04,214
TALK ABOUT MULTI-DISCIPLINARY

6752
04:22:04,214 --> 04:22:06,183
EFFORTS BUT ARE WE MAKING

6753
04:22:06,183 --> 04:22:11,188
HEADWAY? SHARON START THAT ONE? 

6754
04:22:11,188 --> 04:22:16,593
>> I THINK BECAUSE WE HAVE
LONG

6755
04:22:16,593 --> 04:22:17,894
TRADITION OF DIFFERENT

6756
04:22:17,894 --> 04:22:19,930
DISCIPLINES, ESPECIALLY BECAUSE

6757
04:22:19,930 --> 04:22:23,500
NOW I WORK GREAT DEAL IN THOSE

6758
04:22:23,500 --> 04:22:25,736
FIRST FIVE TO EIGHT YEARS OF

6759
04:22:25,736 --> 04:22:26,903
LIFE CHILDREN DON'T DEVELOP IN

6760
04:22:26,903 --> 04:22:34,211
THOSE SILOS, CLOSER HOW THE

6761
04:22:34,211 --> 04:22:38,715
BRAIN IS FUNCTIONING, IT IS NOT

6762
04:22:38,715 --> 04:22:40,917
NEAT AND CLEAN. EVERYONE WAS

6763
04:22:40,917 --> 04:22:43,854
SURPRISED, MOTOR DRIVES

6764
04:22:43,854 --> 04:22:46,790
COGNITION. CHILDREN AND ALL

6765
04:22:46,790 --> 04:22:48,625
THESE NEEDS, WE USED TO WATCH

6766
04:22:48,625 --> 04:22:52,195
CHILDREN GO IN A WEEK ONE OR TWO

6767
04:22:52,195 --> 04:22:54,965
PT SESSIONS OR OT, THEY SEE

6768
04:22:54,965 --> 04:22:56,666
NUTRITIONIST, THEY ARE SEEING A

6769
04:22:56,666 --> 04:22:58,468
SPEECH OR COMMUNITY EXPERT, THEY

6770
04:22:58,468 --> 04:23:00,037
MIGHT HAVE SOMETHING NO DEAL

6771
04:23:00,037 --> 04:23:02,105
WITH PROSTHETICS AND SOMEONE IS

6772
04:23:02,105 --> 04:23:05,675
LOOKING AT THE CHILD IS SHY SO

6773
04:23:05,675 --> 04:23:10,480
WE BRING AND YOU THINK MY

6774
04:23:10,480 --> 04:23:12,616
GOODNESS, LOT OF COOKS IN THE

6775
04:23:12,616 --> 04:23:14,284
KITCHEN AND FOR DECADES I WORKED

6776
04:23:14,284 --> 04:23:20,123
TO SEE CAN WE CREATE AT LEAST

6777
04:23:20,123 --> 04:23:22,526
EARLY YEARS WE BELIEVE

6778
04:23:22,526 --> 04:23:27,397
NEUROPLASTICITY IS OPTIMAL

6779
04:23:27,397 --> 04:23:31,401
PERIOD, CAN WE UNITE NEW

6780
04:23:31,401 --> 04:23:32,202
DISCIPLINE FOR SCIENCE AND

6781
04:23:32,202 --> 04:23:33,070
PRACTICE WORKING WITH CHILDREN

6782
04:23:33,070 --> 04:23:35,305
WE HEARD IN THE LAST TWO DAYS

6783
04:23:35,305 --> 04:23:37,374
SOMEONE WHO COMBINES COGNITIVE

6784
04:23:37,374 --> 04:23:41,478
AND MOTOR THERAPY WHEN WE DO SIX

6785
04:23:41,478 --> 04:23:43,246
HOURS THERAPY AND FIND CHILDREN

6786
04:23:43,246 --> 04:23:44,848
WHO GET SMARTER AND TALK MORE,

6787
04:23:44,848 --> 04:23:47,417
WE ARE NOT DOING THAT BUT MT.

6788
04:23:47,417 --> 04:23:49,386
PROCESS OF HELPING USE THEIR ARM

6789
04:23:49,386 --> 04:23:50,587
AND HAND WE ARE PROBABLY

6790
04:23:50,587 --> 04:23:52,322
TEACHING A BUNCH OF STUFF AND

6791
04:23:52,322 --> 04:23:59,162
DIDN'T REALIZE IT.  SO I LOVE TO

6792
04:23:59,162 --> 04:24:02,065
GET OUT OF THESE SILOS IS

6793
04:24:02,065 --> 04:24:04,968
NATIONAL ORGANIZATIONS H AND

6794
04:24:04,968 --> 04:24:09,072
SOMEONE SOME POINT WILL NEED TO

6795
04:24:09,072 --> 04:24:10,474
SAY IF I WENT AND OBSERVED WHAT

6796
04:24:10,474 --> 04:24:16,613
A PEDIATRIC PT AND PEDIATRIC OT

6797
04:24:16,613 --> 04:24:19,049
DOES WHEN WORKING WITH 18 MONTH

6798
04:24:19,049 --> 04:24:20,250
OLD WHO NEEDS TO IMPROVE

6799
04:24:20,250 --> 04:24:21,451
DEVELOPMENT IN MULTIPLE AREAS

6800
04:24:21,451 --> 04:24:23,253
CAN I GUESS MR. THE PERSON IS A

6801
04:24:23,253 --> 04:24:27,858
OT OR PT? YOU MIGHT BE

6802
04:24:27,858 --> 04:24:28,859
CHALLENGED SO WE HAVE TO BE

6803
04:24:28,859 --> 04:24:30,594
WILLING TO SAY NOT ONLY DO WE

6804
04:24:30,594 --> 04:24:35,031
HAVE MULTI-DISCIPLINARY TEAMS,

6805
04:24:35,031 --> 04:24:38,768
BUT CAN WE LET GO DOING THIS.

6806
04:24:38,768 --> 04:24:41,171
MANY PLACES IN THE WORLD OTPT

6807
04:24:41,171 --> 04:24:44,307
AREN'T SEPARATE THEY COMBINE

6808
04:24:44,307 --> 04:24:46,843
THEM AND I THINK WE NEED TO

6809
04:24:46,843 --> 04:24:50,847
THINK ABOUT BREAKING DOWN

6810
04:24:50,847 --> 04:24:53,083
CLINICAL DISCIPLINES SO THAT WE

6811
04:24:53,083 --> 04:24:57,053
HAVE SOMETHING A LITTLE BROADER 

6812
04:24:57,053 --> 04:24:59,623
AND APPROACH SCIENCE THAT WAY,

6813
04:24:59,623 --> 04:25:03,260
PEOPLE DON'T WANT TO SAY HEY I

6814
04:25:03,260 --> 04:25:04,361
VOLUNTEER MY DEPARTMENT

6815
04:25:04,361 --> 04:25:07,297
DEPARTMENT OF X GO AWAY OR BE

6816
04:25:07,297 --> 04:25:09,633
SUBMERGED.  I LED THE SENTERS

6817
04:25:09,633 --> 04:25:15,038
WHERE WE HAVE 8 TO 14 PEOPLE

6818
04:25:15,038 --> 04:25:16,206
MEETING ON EACH TRIAL AND I

6819
04:25:16,206 --> 04:25:19,776
DON'T MEAN THAT EITHER. I MEAN

6820
04:25:19,776 --> 04:25:24,080
THINKING DIFFERENTLY ABOUT WHO

6821
04:25:24,080 --> 04:25:24,981
YOU HELP PEEP GROWL AND REMAIN

6822
04:25:24,981 --> 04:25:31,688
HEALTHY. IT HAS TO BREAK DOWN

6823
04:25:31,688 --> 04:25:32,455
DIFFERENT DISCIPLINES.

6824
04:25:32,455 --> 04:25:36,226
>> THANK YOU, KAT. 

6825
04:25:36,226 --> 04:25:37,694
>> AS OUTSIDE ENGINEER IT
MAKES

6826
04:25:37,694 --> 04:25:40,230
NO SENSE TO ME AND I FIND IT

6827
04:25:40,230 --> 04:25:41,798
FRUSTRATING WHEN I SEE

6828
04:25:41,798 --> 04:25:42,599
ESPECIALLY EARLY

6829
04:25:42,599 --> 04:25:43,400
INTERVENTIONICALLY MICKS IS A

6830
04:25:43,400 --> 04:25:46,069
BIG PART THE LAST FEW DAYS, WE

6831
04:25:46,069 --> 04:25:48,838
HAVE PTs, OTs, SLP E IF YOU

6832
04:25:48,838 --> 04:25:52,175
ARE LUCKY YOU WILL FIND -- CAN

6833
04:25:52,175 --> 04:25:54,744
GIVE YOU SOME SERVICE AND THEN

6834
04:25:54,744 --> 04:25:56,313
PMRs AND DEVELOPMENTAL DOCS

6835
04:25:56,313 --> 04:25:58,048
AND PARENTS HAVE TO MANAGE THE

6836
04:25:58,048 --> 04:26:00,350
NEUROSURGEON AND ORTHOPEDIC

6837
04:26:00,350 --> 04:26:01,184
SURGEON, IT IS THE PARENTS

6838
04:26:01,184 --> 04:26:02,719
MANAGING THIS, IT CAUSES ME

6839
04:26:02,719 --> 04:26:06,056
STRESS WHEN I SAY IT SESSIONS SO

6840
04:26:06,056 --> 04:26:08,058
FOR RESEARCH PERSPECTIVE WE ARE

6841
04:26:08,058 --> 04:26:09,960
LUCKY WE CAN HAVE THE FLP, THE

6842
04:26:09,960 --> 04:26:15,465
PT, AND OT, NEEDS ARE IN THE LAB

6843
04:26:15,465 --> 04:26:16,199
AND IT IS FANTASTIC BUT

6844
04:26:16,199 --> 04:26:17,667
CONFUSING FOR THE PARENTS AND

6845
04:26:17,667 --> 04:26:18,702
ESPECIALLY EARLY INTERVENTION

6846
04:26:18,702 --> 04:26:22,172
SETTINGS.  MY UNDERSTANDING IS

6847
04:26:22,172 --> 04:26:23,773
THEY HAVE TO MAKE THE CHOICE

6848
04:26:23,773 --> 04:26:25,909
THIS CHILD NEEDS PT OR THIS

6849
04:26:25,909 --> 04:26:28,011
CHILD NEEDS OT SLT FROM A

6850
04:26:28,011 --> 04:26:30,046
FUNDING PERSPECTIVE AND REALITY

6851
04:26:30,046 --> 04:26:36,786
THEY NEED SOME COMBINATION. 

6852
04:26:36,786 --> 04:26:38,188
EXCITED TO GIVE OUTSIDE ENGINEER

6853
04:26:38,188 --> 04:26:42,058
PERSPECTIVE OF MY OBSERVATIONS.

6854
04:26:42,058 --> 04:26:42,726
>> THERESA.

6855
04:26:42,726 --> 04:26:44,427
>> THE THING THAT CAME TO
MY

6856
04:26:44,427 --> 04:26:46,263
MIND THINKING ABOUT THIS

6857
04:26:46,263 --> 04:26:48,164
QUESTION WAS THE FOLKS THAT

6858
04:26:48,164 --> 04:26:49,532
AREN'T IN THE ROOM AND AUDIENCE

6859
04:26:49,532 --> 04:26:53,970
I THINK WE PROBABLY ON AVERAGE

6860
04:26:53,970 --> 04:26:55,372
REPRESENT COMMUNITY OF

6861
04:26:55,372 --> 04:26:57,274
INDIVIDUALS PROBABLY WELL

6862
04:26:57,274 --> 04:26:59,609
CONNECTED WITHIN SYSTEMS, WHERE

6863
04:26:59,609 --> 04:27:00,443
YOU AT LEAST KNOW SOME OF THESE

6864
04:27:00,443 --> 04:27:02,579
OR PEOPLE ARE, YOU MENTIONED ALL

6865
04:27:02,579 --> 04:27:03,647
THOSE FOLKS AND YOU KNOW THEM

6866
04:27:03,647 --> 04:27:07,717
AND MAYBE FOR TIME YOU DON'T GET

6867
04:27:07,717 --> 04:27:09,719
TO TALK TO THEM BUT I'M THINKING

6868
04:27:09,719 --> 04:27:11,755
COMMUNITY PROVIDERS IN HOME OR

6869
04:27:11,755 --> 04:27:14,057
SCHOOL, WHERE THEY MAY BE DON'T

6870
04:27:14,057 --> 04:27:15,592
HAVE MENTORSHIP OPPORTUNITIES WE

6871
04:27:15,592 --> 04:27:19,162
WERE TALKING ABOUT WHERE TIME IS

6872
04:27:19,162 --> 04:27:23,533
REALLY THE BIGGEST CONCERN AND

6873
04:27:23,533 --> 04:27:24,768
DELIVERING NON-EVIDENCE BASED

6874
04:27:24,768 --> 04:27:30,373
CARE SO I THINK THAT THAT IS

6875
04:27:30,373 --> 04:27:31,875
SOMETHING IMPLEMENTATION SCIENCE

6876
04:27:31,875 --> 04:27:33,243
DOMAIN, MAYBE REACHING TO OUR

6877
04:27:33,243 --> 04:27:37,180
COLLEAGUES AND BREAKING DOWN

6878
04:27:37,180 --> 04:27:38,214
THAT COMMUNICATION GAP SO THERE

6879
04:27:38,214 --> 04:27:39,916
IS A LITTLE BIT MORE CARE

6880
04:27:39,916 --> 04:27:44,688
COORDINATION. 

6881
04:27:44,688 --> 04:27:46,956
>> PAUL THE LAST ON THIS
AND

6882
04:27:46,956 --> 04:27:48,625
THEN ONE QUICK FOLLOW-UP

6883
04:27:48,625 --> 04:27:51,494
QUESTION FOR PAUL AS WELL.

6884
04:27:51,494 --> 04:27:54,064
>>

6885
04:27:54,064 --> 04:27:56,900
>> WE START WITH REGISTRY
AND

6886
04:27:56,900 --> 04:27:58,301
DEFINE FORMS THAT GO INTO THE

6887
04:27:58,301 --> 04:28:00,203
ELECTRONIC MEDICAL RECORD AND IT

6888
04:28:00,203 --> 04:28:01,771
IS DONE AS THIS COLLABORATIVE

6889
04:28:01,771 --> 04:28:03,340
PROCESS WE HAVE LOOKED AT

6890
04:28:03,340 --> 04:28:05,942
EVERYBODY'S NEEDS, BRING THEM

6891
04:28:05,942 --> 04:28:08,044
TOGETHER, DATA TO PULL FORWARD

6892
04:28:08,044 --> 04:28:13,883
FROM PT NOTE INTO PMNR NOTE. WE

6893
04:28:13,883 --> 04:28:15,785
ARE STARTING WITH COLLABORATIVE

6894
04:28:15,785 --> 04:28:17,053
IN TERMS OF CLINICAL CARE AND

6895
04:28:17,053 --> 04:28:22,559
THE WAY WE COLLECT DATA. WHEN

6896
04:28:22,559 --> 04:28:24,160
CONDUCTING RESEARCH THE NATURE

6897
04:28:24,160 --> 04:28:26,596
OF WHAT WE DO, ANNUAL RESEARCH

6898
04:28:26,596 --> 04:28:29,232
MEETING LIKE NOAH'S ARC LIKE

6899
04:28:29,232 --> 04:28:31,301
FOUR BY FOUR BY FOUR BY FOUR OF

6900
04:28:31,301 --> 04:28:32,936
EVERY DISCIPLINE WORKING

6901
04:28:32,936 --> 04:28:36,473
TOGETHER ON EVERY STUDY THE

6902
04:28:36,473 --> 04:28:38,308
PURPOSE PROOF IS IN THE PUDDING

6903
04:28:38,308 --> 04:28:40,143
AND WE HAVE TO DO MORE STUDIES

6904
04:28:40,143 --> 04:28:42,011
TO GET THAT COOPERATION

6905
04:28:42,011 --> 04:28:44,314
MULTI-CENTER STUDIES BUT WHICH

6906
04:28:44,314 --> 04:28:45,715
ARE WORKING HARD TO BREAK DOWN

6907
04:28:45,715 --> 04:28:51,554
BARRIERS AND GETTING POSITIVE

6908
04:28:51,554 --> 04:28:55,425
RESPONSE TO ENGAGED INTEREST OF

6909
04:28:55,425 --> 04:29:04,267
NEUROSURGEON IN PT OUTCOMES OR

6910
04:29:04,267 --> 04:29:05,301
PHYSICAL SELECTION INTERVENTION,

6911
04:29:05,301 --> 04:29:06,770
ALL LOOKING POSITIVE BUT IT WILL

6912
04:29:06,770 --> 04:29:08,438
TAKE TIME TO CONFIRM, IT IS

6913
04:29:08,438 --> 04:29:12,041
REALLY THERE. 

6914
04:29:12,041 --> 04:29:13,443
>> PAUL LAST QUESTION FOR
YOU. 

6915
04:29:13,443 --> 04:29:15,612
WHAT IS THE BEST WAY FOR ADULTS

6916
04:29:15,612 --> 04:29:16,746
WITH CEREBRAL PALSY TO JOIN

6917
04:29:16,746 --> 04:29:20,016
RESEARCH NETWORK TO GET INTO

6918
04:29:20,016 --> 04:29:21,684
REGISTRY?

6919
04:29:21,684 --> 04:29:24,421
A. DID PEOPLE GO TO CPRN.ORG

6920
04:29:24,421 --> 04:29:27,290
IT'S MY CP IN THE UPPER RIGHT

6921
04:29:27,290 --> 04:29:29,392
HAND CORNE CORNER. THEY CAN CLIN

6922
04:29:29,392 --> 04:29:33,396
THAT AND FILL IN A SURVEY, FREE,

6923
04:29:33,396 --> 04:29:37,634
CONFIDENTIAL AND IF THEY SIGN

6924
04:29:37,634 --> 04:29:40,437
INFORMED CONSENT OR CLICK ON IT

6925
04:29:40,437 --> 04:29:42,138
STUDIES THAT ARE RELEVANT TO

6926
04:29:42,138 --> 04:29:47,977
THEM. AT FIVE O'CLOCK MOUNTAIN

6927
04:29:47,977 --> 04:29:51,281
TIME WE ARE PAUSING STUDIES

6928
04:29:51,281 --> 04:29:51,915
TRANSITIONING OUR INFRASTRUCTURE

6929
04:29:51,915 --> 04:29:56,186
FROM UTAH TO PIT. SO COUPLE OF

6930
04:29:56,186 --> 04:29:58,254
WEEKS THE STUDY IS NOT ACTIVE

6931
04:29:58,254 --> 04:30:00,723
BUT FORM IS ACTIVE, PERSONALIZED

6932
04:30:00,723 --> 04:30:02,592
WEB SERVICES ARE ACCURATE SO YOU

6933
04:30:02,592 --> 04:30:04,194
JOIN WHEN WE ARE BACK ONLINE OR

6934
04:30:04,194 --> 04:30:06,796
TAKE IT BETWEEN NOW, FIVE P.M.

6935
04:30:06,796 --> 04:30:08,665
MOUNTAIN.

6936
04:30:08,665 --> 04:30:12,202
>> I WANT TO THANK OUR

6937
04:30:12,202 --> 04:30:16,172
PANELISTS, THE TALKS WERE

6938
04:30:16,172 --> 04:30:17,407
WONDERFUL, DISCUSSION IS

6939
04:30:17,407 --> 04:30:18,842
PHENOMENAL AND DID NOT

6940
04:30:18,842 --> 04:30:21,111
DISAPPOINT AS ANCHOR LEG IN OUR

6941
04:30:21,111 --> 04:30:23,613
MARATHON RELAY. SO WANT TO THANK

6942
04:30:23,613 --> 04:30:26,182
YOU, DR. RAMEY STEELE MOULTON

6943
04:30:26,182 --> 04:30:27,584
AND GROSS, THANKS A MILLION

6944
04:30:27,584 --> 04:30:33,223
BEING PART OF THIS PANEL AND FOR

6945
04:30:33,223 --> 04:30:34,491
THINKING THROUGH THE CHALLENGING

6946
04:30:34,491 --> 04:30:38,361
COMING UP. IT IS A PLEASURE TO

6947
04:30:38,361 --> 04:30:39,562
INTRODUCE DIRECTOR OF THE

6948
04:30:39,562 --> 04:30:40,396
NATIONAL INSTITUTE OF

6949
04:30:40,396 --> 04:30:41,831
NEUROLOGICAL DISORDERS AND

6950
04:30:41,831 --> 04:30:44,300
STROKE, DR. WAHL TEAR KOROSHETZ.

6951
04:30:44,300 --> 04:30:45,735
WHO IS LISTENING IN AND IS GOING

6952
04:30:45,735 --> 04:30:48,872
TO PROVIDE US WITH SOME COMMENTS

6953
04:30:48,872 --> 04:30:54,110
FOR FEW MINUTES.  DR. KOROSHETZ.

6954
04:30:54,110 --> 04:30:57,147
>> THANK YOU, ADAM.
INCREDIBLY

6955
04:30:57,147 --> 04:31:02,752
IMPRESSED BY WHAT I HAVE BEEN

6956
04:31:02,752 --> 04:31:04,921
HEARING THE LAST TWO DAYS.  THE

6957
04:31:04,921 --> 04:31:07,223
MOST IMPORTANT THING I HEARD WAS

6958
04:31:07,223 --> 04:31:09,259
THAT REALLY GREAT COMMUNITY TO

6959
04:31:09,259 --> 04:31:14,397
WORK IN. THAT IS THAT MEANS A

6960
04:31:14,397 --> 04:31:17,433
LOT AND WILL HELP YOU GROW AND

6961
04:31:17,433 --> 04:31:21,538
GET THE PEOPLE YOU NEED TO MAKE

6962
04:31:21,538 --> 04:31:22,772
PROGRESS. HEALTH PROBLEM NO

6963
04:31:22,772 --> 04:31:24,073
QUESTION ABOUT THE TOUGHNESS OF

6964
04:31:24,073 --> 04:31:30,613
THESE PROBLEMS. I WANT TO START

6965
04:31:30,613 --> 04:31:33,249
BY SAYING NINDS AND NICHD HAVE

6966
04:31:33,249 --> 04:31:38,121
TREMENDOUS PARTNERSHIP HERE WITH

6967
04:31:38,121 --> 04:31:41,724
REHAB SIDE AND NEUROSCIENCE SIDE

6968
04:31:41,724 --> 04:31:44,294
COMING TOGETHER. ALMOST BEST IN

6969
04:31:44,294 --> 04:31:46,629
THIS INSTANCE AN ANYTHING ELSE I

6970
04:31:46,629 --> 04:31:50,633
CAN THINK OF. COUPLE OF

6971
04:31:50,633 --> 04:31:55,305
REFLECTIONS REALLY PLEASED TO

6972
04:31:55,305 --> 04:31:59,042
HEAR ABOUT CP ACROSS THE LIFE

6973
04:31:59,042 --> 04:32:02,812
SPANISH SHOES THERE ARE AS MARK

6974
04:32:02,812 --> 04:32:06,749
MENTIONED MORE ADULTS WITH CP

6975
04:32:06,749 --> 04:32:08,751
THAN CHILDREN BECAUSE ADULTS

6976
04:32:08,751 --> 04:32:10,520
STARTS AT 18 AND GOES A LONG

6977
04:32:10,520 --> 04:32:15,224
TIME.  AND THE ISSUES THAT NEED

6978
04:32:15,224 --> 04:32:20,163
TO BE TACKLED THERE, A LOT OF

6979
04:32:20,163 --> 04:32:20,997
INSTITUTES COULD BE ENGAGED IN

6980
04:32:20,997 --> 04:32:25,501
THAT. I COULD SAY I RUN THE HEEL

6981
04:32:25,501 --> 04:32:27,737
INITIATIVE, HELPING TO END

6982
04:32:27,737 --> 04:32:29,372
ADDICTION LONG TERM WHICH IS A

6983
04:32:29,372 --> 04:32:30,873
BIG PAIN COMPONENT AND ONE OF

6984
04:32:30,873 --> 04:32:33,176
OUR PROJECTS IS ACTUALLY TRYING

6985
04:32:33,176 --> 04:32:35,511
LOOKING AT ACUTE TO CHRONIC PAIN

6986
04:32:35,511 --> 04:32:37,847
AND HOW TO INTERVENE OR PREVENT

6987
04:32:37,847 --> 04:32:40,450
THAT TRANSITION IN ADOLESCENTS

6988
04:32:40,450 --> 04:32:43,319
WHO HAVE SPINAL SURGERY FOR

6989
04:32:43,319 --> 04:32:51,928
THEIR SCOLIOSIS.  SO I THINK

6990
04:32:51,928 --> 04:32:53,663
PAIN SOMETHING THAT IS WELL

6991
04:32:53,663 --> 04:32:56,199
RESOURCED BECAUSE OF THESE NEW

6992
04:32:56,199 --> 04:32:58,768
FUNDS TO THE HEEL INITIATIVE AND

6993
04:32:58,768 --> 04:33:01,270
COULD BE OTHER OPPORTUNITIES TO

6994
04:33:01,270 --> 04:33:05,208
LOOK AT PAIN IN THE CP

6995
04:33:05,208 --> 04:33:07,210
COMMUNITY. I THINK PAUL PUT OUT

6996
04:33:07,210 --> 04:33:09,712
NICELY COUPLE OF OTHER PEOPLE,

6997
04:33:09,712 --> 04:33:12,181
THE COMMUNITY OF PEOPLE WITH CP

6998
04:33:12,181 --> 04:33:14,951
WANT TO BE PART OF RESEARCH AND

6999
04:33:14,951 --> 04:33:17,754
NOT JUST THE SUBJECT BUT PART OF

7000
04:33:17,754 --> 04:33:22,458
THE DESIGN STAGE, BE PARTNERS

7001
04:33:22,458 --> 04:33:24,027
RANKED THROUGH RESEARCH SO

7002
04:33:24,027 --> 04:33:28,464
ENCOURAGE PEOPLE TO DO THAT AS

7003
04:33:28,464 --> 04:33:29,832
-- I THINK IT PROBABLY MAKES

7004
04:33:29,832 --> 04:33:31,567
RESEARCH MORE FULFILLING TO THE

7005
04:33:31,567 --> 04:33:33,269
INVESTIGATORS TO HAVE GOOD

7006
04:33:33,269 --> 04:33:36,372
PARTNERS WHO HAVE LIVED

7007
04:33:36,372 --> 04:33:41,744
EXPERIENCE. IN TERMS OF THE

7008
04:33:41,744 --> 04:33:43,780
SCIENCE WE HAVE FOCUSED ON HOW

7009
04:33:43,780 --> 04:33:47,350
DO WE PREVENT HYPOXIC ISCHEMIC

7010
04:33:47,350 --> 04:33:50,420
INJURY IN UTERO OR AROUND

7011
04:33:50,420 --> 04:33:51,821
DELIVERY AND WE HAD INVESTMENT

7012
04:33:51,821 --> 04:33:55,792
ON LIPO POIETIN. ERYTHROPOIETIN

7013
04:33:55,792 --> 04:33:58,227
BUT IT DOESN'T LOOK LIKE IT WILL

7014
04:33:58,227 --> 04:34:00,296
BE HELPFUL SO EVE WITH TO

7015
04:34:00,296 --> 04:34:02,532
RETHINK HOW TO GET THERE, CAN'T

7016
04:34:02,532 --> 04:34:07,904
GIVE UP, HAVE TO BE MORE CLEVER

7017
04:34:07,904 --> 04:34:11,107
TO PROTECT THE BRAIN DURING THIS

7018
04:34:11,107 --> 04:34:12,809
VULNERABLE PERIOD THAT LEADS TO

7019
04:34:12,809 --> 04:34:20,249
CP. AFTER REHI THE ANIMAL

7020
04:34:20,249 --> 04:34:21,818
MODELS, THAT LOOKED GOOD BUT

7021
04:34:21,818 --> 04:34:26,322
DIDN'T WORK IN HUMANS.  THAT IS

7022
04:34:26,322 --> 04:34:28,291
NOT -- UNFORTUNATELY NOT A

7023
04:34:28,291 --> 04:34:30,359
PROBLEM JUST WITH CP THAT

7024
04:34:30,359 --> 04:34:32,295
TRANSITION FROM THE RODENT TO

7025
04:34:32,295 --> 04:34:33,863
HUMAN IS PLAYING OUT IN OTHER

7026
04:34:33,863 --> 04:34:39,669
DISEASES AS WELL.  WE DO HAVE

7027
04:34:39,669 --> 04:34:41,404
THIS POPULATION AT HIGH RISK

7028
04:34:41,404 --> 04:34:42,872
PREMATURE INFANTS AND SO

7029
04:34:42,872 --> 04:34:46,609
LEARNING HOW TO PROTECT THEM IS

7030
04:34:46,609 --> 04:34:48,344
GOT TO BE PREVENTION WHERE YOU

7031
04:34:48,344 --> 04:34:51,714
HAVE YOUR BIGGEST EFFECT SIZE.

7032
04:34:51,714 --> 04:34:53,850
THE OTHER INTERESTING THING

7033
04:34:53,850 --> 04:34:58,187
WHICH IS THE HOW GENOMICS IS

7034
04:34:58,187 --> 04:35:04,527
MAKING A BIG HEAD ROAD INTO

7035
04:35:04,527 --> 04:35:09,332
CEREBRAL PALSY WHERE BINDING

7036
04:35:09,332 --> 04:35:12,435
MUTATION SO AGAIN MENTAL

7037
04:35:12,435 --> 04:35:14,237
DISORDER IS NOT DUE TO SINGLE

7038
04:35:14,237 --> 04:35:18,975
EVENT LIKE HYPOXIC EPISODE OR

7039
04:35:18,975 --> 04:35:22,111
STROKE. BUT THAT IS A NEW AREA

7040
04:35:22,111 --> 04:35:23,813
OF UNDERSTANDING AND ALSO LEADS

7041
04:35:23,813 --> 04:35:26,816
TO THE IDEA IDENTIFY GENES

7042
04:35:26,816 --> 04:35:30,286
PEOPLE TALKED ABOUT N EQUAL 1

7043
04:35:30,286 --> 04:35:33,523
TRIALS BUT NOT ONLY THAT

7044
04:35:33,523 --> 04:35:36,459
POTENTIALLY TREATMENT THAT

7045
04:35:36,459 --> 04:35:39,829
EITHER REPLACE A GENE NOT

7046
04:35:39,829 --> 04:35:41,931
WORKING WELL OR GET RID OF GENE

7047
04:35:41,931 --> 04:35:49,038
THAT IS HARMFUL DUE TO MUTATION 

7048
04:35:49,038 --> 04:35:51,307
WE ARE JUST BEGINNING THE

7049
04:35:51,307 --> 04:35:53,342
SCIENCE, WE HAVE A URGENT ULTRA

7050
04:35:53,342 --> 04:35:55,845
RARE NEUROGENETIC DISORDERS TO

7051
04:35:55,845 --> 04:35:57,947
DEVELOP GENE THERAPIES. SO

7052
04:35:57,947 --> 04:36:00,750
HOPEFULLY ONE OF THESE DAYS WE

7053
04:36:00,750 --> 04:36:03,853
CAN THERE WILL BE A STRONG

7054
04:36:03,853 --> 04:36:06,355
RATIONALE MOVING GENETIC

7055
04:36:06,355 --> 04:36:09,725
THERAPIES TO SOME OF THE PARSE

7056
04:36:09,725 --> 04:36:12,128
OUT WITH THE IDENTIFIED

7057
04:36:12,128 --> 04:36:15,231
MUTATIONS. IF YOU TRY TO MAKE A

7058
04:36:15,231 --> 04:36:16,332
DIFFERENCE, NEED TO KNOW WHAT IS

7059
04:36:16,332 --> 04:36:21,838
GOING ON IN T BRAIN AND HOW YOU

7060
04:36:21,838 --> 04:36:23,873
CAN MAKE THAT CHANGE COMPENSATE

7061
04:36:23,873 --> 04:36:26,809
FOR IT OR YOU CAN PREVENT CHANGE

7062
04:36:26,809 --> 04:36:29,779
FROM HAPPENING SO WHAT IS GOING

7063
04:36:29,779 --> 04:36:33,850
ON IN THE BRAIN. THERE IS

7064
04:36:33,850 --> 04:36:38,120
AMAZING TECHNOLOGIES LOOKING AT

7065
04:36:38,120 --> 04:36:40,289
CIRCUITS AND CLEARLY, CEREBRAL

7066
04:36:40,289 --> 04:36:45,127
PALSY IS A CLASSIC CIRCUIT

7067
04:36:45,127 --> 04:36:47,597
ABNORMALITY. IN THE MOTOR

7068
04:36:47,597 --> 04:36:48,931
CIRCUIT DOMAIN. SOME OF THOSE

7069
04:36:48,931 --> 04:36:52,935
ARE EASY TO STUDY. SO TRYING TO

7070
04:36:52,935 --> 04:36:57,173
USE TECHNOLOGIES TO UNDERSTAND

7071
04:36:57,173 --> 04:37:01,110
DEVELOPMENTAL PROCESS AND NORMAL

7072
04:37:01,110 --> 04:37:03,145
AND WHAT HAPPENS IN CP COULD

7073
04:37:03,145 --> 04:37:08,451
HAVE SOME REALLY INTERESTING

7074
04:37:08,451 --> 04:37:10,887
BENEFIT. RIGHT NOW WE HAVE

7075
04:37:10,887 --> 04:37:13,489
IMAGING TANTALIZING IN DIFFUSE

7076
04:37:13,489 --> 04:37:15,124
WHITE MATTER INTENSITY,

7077
04:37:15,124 --> 04:37:16,792
DIFFUSION TENSOR IMAGING THEN

7078
04:37:16,792 --> 04:37:21,497
HEARD ABOUT THE EEG INFRARED

7079
04:37:21,497 --> 04:37:24,433
SPECTROSCOPY IN MOVING PEOPLE,

7080
04:37:24,433 --> 04:37:26,636
KIDS, SO ADVANTAGE IS THERE

7081
04:37:26,636 --> 04:37:28,004
POTENTIALLY IDENTIFY BIOMARKERS

7082
04:37:28,004 --> 04:37:30,773
THAT CAN BE USED AS TARGETS FOR

7083
04:37:30,773 --> 04:37:33,910
TREATMETREATMENT. TRY TO DEVELOP

7084
04:37:33,910 --> 04:37:35,211
TREATMENT, THERE ARE TREATMENT

7085
04:37:35,211 --> 04:37:38,714
WE TALKED EARLY INTERVENTION

7086
04:37:38,714 --> 04:37:43,953
LIKE MANY DISORDERS, THE BRAIN

7087
04:37:43,953 --> 04:37:46,455
SEEMS TO RESPOND THE EARLIER THE

7088
04:37:46,455 --> 04:37:47,089
ENTERRECOMMENDATION IS. AND SOME

7089
04:37:47,089 --> 04:37:49,292
INTERESTING THINGS, SEE IF THEY

7090
04:37:49,292 --> 04:37:52,094
PAN OUT, TRANSCRANIAL

7091
04:37:52,094 --> 04:37:54,563
STIMULATION, VAGAL NERVE

7092
04:37:54,563 --> 04:37:57,667
STIMULATION. THANKS TO DR. RAMEY

7093
04:37:57,667 --> 04:38:00,937
AND LOWE WE HAVE THE I ACQUIRE

7094
04:38:00,937 --> 04:38:03,940
TRIAL THROUGH STROKE NETWORK.

7095
04:38:03,940 --> 04:38:11,347
CONSTRAINT BASED THERAPY. 

7096
04:38:11,347 --> 04:38:14,884
INFANTS 8 TO 36 MONTHS OLD WHO

7097
04:38:14,884 --> 04:38:20,289
SUFFER A STROKE WE KNOW WHAT WE

7098
04:38:20,289 --> 04:38:23,025
ARE DOING WE HAVE TO BE MORE

7099
04:38:23,025 --> 04:38:25,227
CLEVER, IT IS A HARD PROBLEM, WE

7100
04:38:25,227 --> 04:38:28,230
WANT TO MAKE A DIFFERENCE FOR

7101
04:38:28,230 --> 04:38:30,099
PEOPLE EVEN IF A SMALL

7102
04:38:30,099 --> 04:38:31,467
DIFFERENCE BUT CLINICALLY

7103
04:38:31,467 --> 04:38:33,603
MEANINGFUL, WE ALSO WANT TO

7104
04:38:33,603 --> 04:38:34,837
DRIVE FOR TREATMENT THAT HAVE

7105
04:38:34,837 --> 04:38:39,375
BIG EFFECT SIZES AS WELL. I

7106
04:38:39,375 --> 04:38:41,344
THINK WITH THE COMMUNITY WORKING

7107
04:38:41,344 --> 04:38:43,279
TOGETHER BUILDING THE CDEs

7108
04:38:43,279 --> 04:38:47,450
WORKING ON THE REGISTRY, THAT --

7109
04:38:47,450 --> 04:38:50,486
PUT TOGETHER, AND THE ENERGY

7110
04:38:50,486 --> 04:38:51,787
PASSION WE HEARD ABOUT OVER THE

7111
04:38:51,787 --> 04:38:55,958
LAST TWO DAYS, I WOULD BE

7112
04:38:55,958 --> 04:38:59,061
OPTIMISTIC ABOUT FUTURE AND

7113
04:38:59,061 --> 04:39:01,263
CERTAINLY NINDS AND NICHD NCMRR

7114
04:39:01,263 --> 04:39:02,465
ARE HERE TO MAKE THAT HAPPEN FOR

7115
04:39:02,465 --> 04:39:07,069
YOU. WITH THAT I WANT TO END BY

7116
04:39:07,069 --> 04:39:09,705
THANKING PEOPLE THAT WORKED ON

7117
04:39:09,705 --> 04:39:18,247
THE SESSIONS, (LISTING NAMES)

7118
04:39:18,247 --> 04:39:21,884
FROM NICHD, RACHEL ANDERSON AND

7119
04:39:21,884 --> 04:39:24,587
CAROL WONG. THANKS AGAIN FOR ALL

7120
04:39:24,587 --> 04:39:26,122
THE GOOD THINKING THAT YOU

7121
04:39:26,122 --> 04:39:29,225
SHARED WITH US THE LAST TWO

7122
04:39:29,225 --> 04:39:33,996
DAYS. AND WITH THAT, I THINK WE

7123
04:39:33,996 --> 04:39:35,297
ARE DONE. I THINK THAT IS THE

7124
04:39:35,297 --> 04:39:37,500
END. THANK YOU SO MUCH,

7125
04:39:37,500 --> 04:39:43,105
EVERYBODY. HAVE A GREAT EVENING 

7126
04:39:43,105 --> 04:39:44,907
DON'T FORGET TO SIGN UP BY FIVE

7127
04:39:44,907 --> 04:39:49,378
MOUNTAIN TIME.

7128
04:39:49,378 --> 04:39:52,314
>> THANK YOU WALTER FOR
THE

7129
04:39:52,314 --> 04:39:53,282
WONDERFUL COMMENTS AND THANKS

7130
04:39:53,282 --> 04:39:54,350
EVERYBODY FOR PARTICIPATING FOR

7131
04:39:54,350 --> 04:39:57,386
THE LAST COUPLE OF DAYS. WE ARE

7132
04:39:57,386 --> 04:40:00,056
ADJOURNED AT THIS POINT AND HOPE

7133
04:40:00,056 --> 04:40:02,291
Y'ALL HAVE A WONDERFUL EVENING

7134
04:40:02,291 --> 04:40:03,492
AND ENJOY THE REST OF YOUR DAY.

7135
04:40:03,492 --> 04:40:13,703
THANK YOU.