>>WHEN IT WAS CREATED IN 1962,
NICHD WAS THE FIRST TO FOCUS
ON THE ENTIRE LIFE PROCESS.
WHETHER A SPECIFIC DISEASE OR
BODY SYSTEM.
SINCE THEN, NICHD HAS REMAINED
DEDICATED TO UNDERSTANDING ALL
ASPECTS OF HUMAN DEVELOPMENT,
INCLUDING EVENTS AND CONDITIONS
THAT WE ALTER ITS COURSE.
>>INNOVATION IS CENTRAL TO OUR
MISSION FROM THE VERY BEGINNING.
IN 1965, NICHD FUNDED RESEARCH
SHOWED THAT A BLOOD SPOT TEST
SAFELY AND EFFECTIVELY
IDENTIFIED NEWBORNS WITH PKU,
ALLOWING TREATMENT TO BEGIN SOON
AFTER BIRTH, AND PREVENTING
INTELLECTUAL DISABILITY.
TODAY NEWBORN SCREENING PUTS
MILLIONS OF BABIES ON THE PATH
TO GOOD HEALTH RIGHT FROM THE
START.
WE STEPPED INTO THE
INTERNATIONAL SPOT LINE IN 1972,
WHEN A GRANDY SHARED A NOBEL
PRIZE FOR DISCOVERY ON
ANTIBODIES.
RESEARCHERS HAVE SINCE RECEIVED
20 NOBEL PRIZES FOR THINGS THAT
IMPROVE LIVES EVERY DAY.
INNOVATION FROM NICHD INTRAMURAL
SCIENTIST AND HER COLLEAGUES LED
TO FDA APPROVAL OF THE FIRST
HOME PREGNANCY TEST IN 1978.
THESE TESTS NOW PROVIDE PRIVATE,
SPEEDY AND ACCURATE RESULTS WELL
BEFORE THE FIRST PHYSICAL SIGNS
OF PREGNANCY AND HAVE INSPIRED
OTHER AT-HOME TESTING METHODS
LIKE THOSE FOR COVID-19.
IN 1987, INNOVATIONS IN VACCINE
TECHNOLOGY LED BY INTRAMURAL
SCIENTISTS JOHN ROBBINS RESULTED
IN THE FDA APPROVAL OF A SAC
SEEN FOR HIB.
THE VACCINE HAS VIRTUALLY
ELIMINATED HIB AS A GLOBAL CAUSE
OF DEATH OR INTELLECTUAL
DISABILITY AND THE NICHD
DEVELOPED TECHNOLOGY HAS MADE
OTHER LIFE-SAVING VACCINES
POSSIBLE, SUCH AS THOSE AGAINST
KNEW MAPNEUMOCOCCAL DISEASE.
INNOVATIONS IN CLONING AND
CHROMOSOME MAPPING EXCITED A
REVOLUTION IN GENETIC
ENGINEERING.
IN 1991, GRANTEE STEVEN WARREN
AND COLLEAGUES DISCOVERED THE
CAUSE OF FRAGILE X SYNDROME.
WE CONTINUE TO INNOVATE DURING
THE HIV/AIDS CRISIS IN THE
1980s AND 90s, AND LEADING
AND PARTNERING ON RESEARCH TO
UNDERSTAND HOW HIV AFFECTED
PREGNANCY IN NEWBORNS.
1994, A STUDY WE COFUNDED SHOWED
TAKING A REGIMEN OF AZT DURING
PREGNANCY SAFELY AND EFFECTIVELY
REDUCED THE RISK OF HIV
TRANSMISSION TO THE FETUS.
THE RATE OF PERINATAL HIV
TRANSMISSION IS NOW LESS THAN 1%
IN THE UNITED STATES.
INNOVATION ALSO HELPED US TO
ELIMINATE NEW ASPECTS OF HUMAN
DEVELOPMENT.
IN 2004, RESEARCH WE FUNDED
DEMONSTRATED THAT EFFECTIVE --
INSTRUCTION CHANGED THE
STRUCTURE OF THE BRAIN.
AFTER DECADES OF OUR WORK ON
WOMEN'S HEALTH, IN 2014, THE
FDA-APPROVED THE FIRST TREATMENT
FOR ENDOMETRIOSIS-RELATED PAIN.
THIS PILL IMPROVES QUALITY OF
LIFE AMONG PEOPLE WITH THIS
COMMON CONDITION AND MAY DELAY
OR ELIMINATE THE NEED FOR
SURGERY.
IN 2019, NICHD FUNDED
RESEARCHERS USED 3D PRINTING TO
CREATE IMPLANTS THAT PARTIALLY
RESTORED FUNCTION IN ANIMALS
WITH SPINAL CORD INJURIES.
THE IMPLANTS MAY SOMEDAY HELP
PEOPLE RECOVER COMPLETELY FROM
SPINAL INJURIES.
MOST RECENTLY, WE MET THE
CHALLENGES OF THE COVID-19
PANDEMIC THROUGH ESSENTIAL
RESEARCH ON POPULATIONS WITH
UNIQUE HEALTH NEEDS, INCLUDING
PREGNANT PEOPLE, CHILDREN, AND
PEOPLE WITH DISABILITIES.
AMONG THE MANY COVID-RELATED
INNOVATION IS MACHINE
INTELLIGENCE AND MACHINE
LEARNING TO BETTER UNDERSTAND
INFLAMMATORY SYNDROME IN
CHILDREN.
>>EUNICE KENNEDY SHRIVER ONCE
SAID, IF YOU DON'T HAVE AN IDEA
THAT MATERIALIZES AND CHANGES A
PERSON'S LIFE, THEN WHAT HAVE
YOU GOT?
FOR 60 YEARS, NICHD HAS BEEN
CHANGING LIVES THROUGH RESEARCH.
BY BUILDING AND FOSTERING A
COMMUNITY OF SCIENCE FOCUSED ON
THOSE WITH THE GREATEST HEALTH
NEEDS.
NICHD CONTINUES TO IMPROVE
HEALTH ACROSS THE TRAJECTORY OF
HUMAN DEVELOPMENT.
WE LOOK FORWARD TO 60 MORE YEARS
OF INNOVATION TO PROMOTE HEALTHY
PREGNANCIES, HEALTHY CHILDREN,
AND HEALTHY AND OPTIMAL LIVES.
>>AND NOW, PLEASE WELCOME NICHD
DIRECTOR, DR. DIANA BIANCHI.
>>GOOD MORNING, EVERYONE.
AND WELCOME TO NICHD'S 60TH
ANNIVERSARY SYMPOSIUM.
WE'RE DELIGHTED THAT YOU'RE
HERE, AND HOPE THAT YOU ENJOY
TODAY'S PROGRAM.
ON THIS DAY, THIS EXACT DAY IN
1962, CONGRESS ESTABLISHED NICHD
AS THE FIRST NIH INSTITUTE TO
FOCUS ON THE ENTIRE LIFE COURSE.
RATHER THAN A SPECIFIC DISEASE
OR ORGAN.
THERE HAVE BEEN SEVERAL OTHER
FIRSTS SINCE THEN, WHICH WE'LL
HIGHLIGHT DURING TODAY'S
PROCEEDINGS.
WHILE IT IS INSPIRING TO REFLECT
ON WHAT WE'VE ACCOMPLISHED IN
THE PAST 60 YEARS, MUCH OF OUR
AGENDA TODAY WILL FOCUS ON THE
FUTURE.
WE WILL EXPLORE POTENTIAL
PATHWAYS THAT OFFER NEW
OPPORTUNITIES FOR SCIENTIFIC
DISCOVERY AND ADVANCES IN
MEDICAL PRACTICE.
WE'LL DISCUSS HOW HARNESSING
EMERGING TECHNOLOGIES CAN HELP
US TO BETTER UNDERSTAND HUMAN
DEVELOPMENT, IMPROVE
REPRODUCTIVE HEALTH, ENHANCE THE
LIVES OF CHILDREN AND
ADOLESCENTS, AND OPTIMIZE
ABILITIES FOR ALL.
THE THEME FOR TODAY'S SYMPOSIUM
IS: HEALTHY PREGNANCY, HEALTHY
CHILDREN, AND HEALTHY AND
OPTIMAL LIVES.
THIS MAY SOUND FAMILIAR PLAN.
LIKE OUR 60TH ANNIVERSARY
COMMEMORATION, THE VISION
STATEMENT IS DESIGNED TO LOOK
FORWARD AND CREATE A MENTAL
IMAGE OF THE IDEAL STATE WE WISH
TO ACHIEVE.
WE HOPE THAT THIS THEME
RESONATES WITH YOU THROUGHOUT
TODAY.
OVER THE PAST 60 YEARS, NICHD'S
ACCOMPLISHMENTS HAVE TOUCHED
EVERY FACET OF OUR EVERYDAY
LIVES, AS YOU HEARD IN THE
PREVIOUS VIDEO.
OUR CONTRIBUTIONS TO SOCIETY
INCLUDE PIONEERING AND EXPANDING
NEWBORN SCREENING FOR GENETIC
AND METABOLIC DISORDERS.
, INVENTING VACCINES FOR
CHILDHOOD BACTERIAL DISEASES,
DEVELOPING TECHNOLOGY THAT LED
TO THE FIRST HOME PREGNANCY
TEST, AND NEARLY ELIMINATING
PERINATAL TRANSMISSION OF HIV IN
THE UNITED STATES.
NICHD ALSO CONTRIBUTED THE
EMERGENCE AND ELEVATION OF
SCIENTIFIC DISCIPLINES.
FOR EXAMPLE, BY FUNDING RESEARCH
ON BIRTH DEFECTS AND
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES, OR IDDs, NICHD
ESTABLISHED IDDs A AS A
RECOGNIZED FIELD OF RESEARCH AND
CREATED A NEW DEVELOPMENTAL
PEDIATRIC SUBSPECIALTY.
OVER THE YEARS, NICHD HAS
CONTINUED TO FOCUS ON OVERLOOKED
TOPICS, INCLUDING MATERNAL
HEALTH, CONTRACEPTION, THE
INCLUSION OF PREGNANT AND
LACTATING INDIVIDUALS IN
RESEARCH, RARE DISORDERS,
GYNECOLOGIC HEALTH, AND MEDICAL
REHABILITATION.
I'M EXCITED TO BE JOINED TODAY
BY SEVERAL ESTEEMED SCIENTISTS,
ADVOCATES AND POLICY
PROFESSIONALS, WHO WILL OFFER
THEIR VISION AND INSIGHTS.
I'M TRULY GRATEFUL FOR THEIR
CONTRIBUTIONS TO WHAT PROMISES
TO BE AN ILLUMINATING AND
ENGAGING DISCUSSION.
OUR FIRST SUCH ESTEEMED SPEAKER
IS DR. LARRY TABAK.
LARRY IS CURRENTLY PERFORMING
THE DUTIES OF THE DIRECTOR OF
THE NATIONAL INSTITUTES OF
HEALTH, OFFICIALLY TAKING OFFICE
ON DECEMBER 20TH, 2021.
HE HAS PREVIOUSLY SERVED AS
PRINCIPAL DEPUTY DIRECTOR AND
THE DEPUTY ETHICS COUNSELOR OF
NIH SINCE AUGUST 2010, AND
BEFORE THAT, AS THE DIRECTOR OF
THE NATIONAL INSTITUTE OF DENTAL
AND CRANIOFACIAL RESEARCH.
ELECTED TO THE NATIONAL ACADEMY
OF MEDICINE IN 2002, LARRY'S
MAJOR RESEARCH FOCUS HAS BEEN ON
THE STRUCTURE, BIOSYNTHESIS AND
FUNCTION OF GLYCOPROTEINS.
HE CONTINUES HIS RESEARCH WORK
IN THIS AREA, MAINTAINING AN
ACTIVE LABORATORY WITHIN THE NIH
INTRAMURAL PROGRAM, IN ADDITION
TO HIS ADMINISTRATIVE DUTIES.
HE RECEIVED HIS
UNDERGRADUATE DEGREE FROM THE
CITY COLLEGE OF NEW YORK, HIS
DDS DEGREE FROM COLUMBIA
UNIVERSITY, AND A PH.D. DEGREE
FROM THE UNIVERSITY OF BUFFALO.
WITHOUT FURTHER ADO, PLEASE
WELCOME DR. LARRY TABAK.
>>WELL, THANK YOU, DIANA, FOR
THAT KIND INTRODUCTION.
AND FOR INVITING ME TO TODAY'S
SYMPOSIUM.
I'M TRULY HONORED TO BE HERE,
AND WISH NICHD A VERY HAPPY 60TH
BIRTHDAY.
FOR OVER 100 YEARS, NIH
SCIENTISTS HAVE PAVED THE WAY
FOR IMPORTANT DISCOVERIES THAT
HAVE IMPROVED HEALTH AND SAVED
LIVES.
THEIR STUDIES HAVE LED TO THE
DEVELOPMENT OF MRI, THE CREATION
OF VACCINES AND TREATMENTS
AGAINST INFECTIOUS DISEASES, AND
TO THE CONCEPTION, IF YOU WILL,
OF THE HOME PREGNANCY TEST.
AMONG DOZENS OF OTHER ADVANCES.
NIH-FUNDED RESEARCHERS ARE
PIONEERS OF SCIENCE.
THEIR DETERMINATION AND
INVENTIVE SPIRIT HELP US
CONFRONT AND OVERCOME THE HEALTH
CHALLENGES THAT FACE OUR WORLD.
NICHD IS AN IMPORTANT MEMBER OF
THE NIH COMMUNITY.
FROM ITS INCEPTION, NICHD HAS
FOCUSED ON BIOBEHAVIORAL AND
SOCIAL SCIENCE, AS WELL AS ON
BIOMEDICAL RESEARCH.
THE INSTITUTE HAS PRIORITIZED
POPULATIONS THAT WERE OFTEN
OVERLOOKED BY RESEARCHERS, AND
EVEN SOCIETY.
WOMEN, CHILDREN, AND PEOPLE WITH
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES.
THE FOUNDING MISSION AND FOCUS
OF THE INSTITUTE SEEM PRESCIENT
SIX DECADES LATER.
SCIENCE IS NOW MORE
MULTIDISCIPLINARY, AND WE HAVE A
GREATER UNDERSTANDING OF THE
LIFE-LONG CONSEQUENCES OF
ENVIRONMENTAL PROCESSES AND
EXPOSURES.
THE COVID-19 PANDEMIC CAST A
SPOTLIGHT ON HEALTH INEQUITIES
AND THE IMPORTANCE OF
BIOBEHAVIORAL AND SOCIAL SCIENCE
RESEARCH AND THE IMPORTANCE OF
INVOLVING COMMUNITIES IN THE
ISSUES THAT AFFECT THEIR HEALTH.
SOCIETY IS NOW MORE AWARE OF THE
NEED TO ENSURE THAT ALL OF ITS
MEMBERS ARE RESPECTED, VALUED,
AND GIVEN THE BEST OPPORTUNITIES
FOR A HEALTHY LIFE.
TODAY'S YOU WILL HEAR HIGHLIGHTS
FROM THE LAST 60 YEARS, BUT I
WOULD LIKE TO FOCUS FOR A MOMENT
ON NICHD'S RECENT HISTORY IN
FACING PUBLIC HEALTH CRISES.
THE INSTITUTE HAS BEEN A LEADER
IN UNDERSTANDING THE EFFECTS OF
COVID-19 ON PREGNANT AND
POSTPARTUM WOMEN, CHILDREN AND
ADOLESCENTS, AND PEOPLE WITH
DISABILITIES.
NIH CO-LEADS THE INITIATIVE TO
REDUCE AND ADDRESS MATERNAL
MORBIDITY AND MORTALITY,
PARTICULARLY AMONG UNDERSERVED
POPULATIONS.
THE INSTITUTE ALSO LEADS EFFORTS
TO STUDY THE PLACENTA
NON-INVASIVELY DURING PREGNANCY,
WHICH PROMISES TO YIELD NEW
INSIGHTS INTO HOW THIS ORGAN
INFLUENCES HEALTH AND DISEASE.
THANK YOU ALL FOR ATTENDING THIS
SYMPOSIUM TODAY TO CELEBRATE
NICHD'S SIX DECADES OF PROMOTING
HEALTHY PREGNANCIES, CHILDREN,
AND LIVES.
BEFORE I PASS THE MICROPHONE
BACK TO DR. BE BIANCHI, I WANT O
THANK HER SINCERELY FOR HER
CONTINUING SUPPORT OF THE NICHD
MISSION AND FOR HER STEADY
LEADERSHIP IN THE FACE OF A
CHANGING, CHALLENGING
CIRCUMSTANCES.
>>THANK YOU FOR THOSE KIND
WORDS, LARRY.
ONE OF NICHD'S MANY FIRSTS IS
THAT WE WERE THE FIRST INSTITUTE
TO BE NAMED AFTER A PERSON.
ON DECEMBER 21ST, 2007, BY AN
ACT OF CONGRESS, NICHD WAS
RENAMED THE EUNICE KENNEDY
SHRIVER NATIONAL INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT, IN HONOR OF
MRS. SHRIVER'S VISION AND
DEDICATION FOR HER CONTRIBUTIONS
TO THE FOUNDING OF THE
INSTITUTE.
MRS. SHRIVER WAS A LIFELONG
ADVOCATE FOR CHILDREN, MATERNAL
HEALTH, AND ESPECIALLY PEOPLE
WITH INTELLECTUAL AND A
DEVELOPMENTAL DISABILITIES.
SHE WAS AN ARDENT VOICE FOR THE
VOICELESS AND AS A SENIOR
ADVISOR TO HER BROTHER,
PRESIDENT JOHN F. KENNEDY,
HELPED TO MAKE NICHD A REALITY.
WITHOUT HER, THE INSTITUTE WOULD
NOT BE WHAT IT IS TODAY.
WE'RE EXTREMELY HONORED TODAY TO
HAVE REMARKS FROM EUNICE'S SON,
DR. TIMOTHY SHRIVER.
TIM IS THE CHAIRMAN OF THE
SPECIAL OLYMPICS INTERNATIONAL
AND A FORMER MEMBER OF NICHD'S
ADVISORY COUNCIL.
HE BEGAN HIS CAREER AS AN
EDUCATOR AND SUBSEQUENTLY
COFOUNDED AND CURRENTLY CHAIRS
THE COLLABORATIVE FOR ACADEMIC,
SOCIAL AND EMOTIONAL LEARNING, A
LEADING SCHOOL REFORM
ORGANIZATION IN THE FIELD OF
SOCIAL AND EMOTIONAL LEARNING.
TIM EARNED HIS
UNDERGRADUATE DEGREE FROM YALE
UNIVERSITY, A MASTER'S DEGREE
FROM CATHOLIC UNIVERSITY, AND A
DOCTORATE IN EDUCATION FROM THE
UNIVERSITY OF CONNECTICUT.
HE HAS PRODUCED SIX FILMS, AND
IS THE AUTHOR OF "THE NEW YORK
TIMES" BEST SELLING BOOK, "FULLY
ALIVE, DISCOVERING WHAT MATTERS
MOST."
AND COED TOR CO-EDITOR OF A NEWE
BASIS OF HOPE AND AWAKENING.
PLEASE WELCOME TIM SHRIVER.
THANK YOU, TIM, FOR BEING HERE
WITH US.
>>THANK YOU.
THANK YOU SO MUCH, DR. BIANCHI.
THANK YOU SO MUCH FOR WELCOMING
ME AND FOR ALLOWING ME TO JOIN.
THANK YOU, DR. TABAK, FOR BEING
HERE AND FOR REPRESENTING THE
ENTIRE NATIONAL INSTITUTES OF
HEALTH ON THIS HAPPY OCCASION,
THIS BIRTHDAY.
I NOTICE YOUR TITLE, DR. TABAK,
IS PERFORMING THE DUTIES.
I WAS THINKING MYSELF, WHAT AM I
PERFORMING THE DUTIES OF CHAIR
OF THE SPECIAL LIMENTS MOVEMENT,
I'M PERFORMING THE DUTIES OF A
CITIZEN, BUT REALLY I'M
PERFORMING THE DUTIES OF A SON
TODAY AND I'M VERY PROUD OF
PERFORMING THOSE DUTIES IN HONOR
OF MY MOTHER, BUT ALSO IN HONOR
OF THE WORK OF EVERYONE AT THE
NICHD OVER THESE 60 YEARS WHO
HAS DONE SUCH EXTRAORDINARY WORK
OF DISCOVERY, OF CLINICAL
TRANSLATION, OF ADVOCACY.
I'VE TALKED TO DR. BIANCHI MANY
TIMES ABOUT THE IMPORTANT WORK
THE INSTITUTE CAN DO, INFORMING
CONGRESS AND DECISION MANGERS
AROUND THE COUNTRY AND AROUND
THE WORLD ABOUT THE EMERGING
ISSUES OF WOMEN AND CHILDREN,
CHILDREN ESPECIALLY WITH
DEVELOPMENTAL AND INTELLECTUAL
CHALLENGES.
I'M HERE TO CELEBRATE MY MOM'S
ROLE AS A PARTNER TO EACH AND
EVERY ONE OF YOU WHO HAVE PLAYED
SUCH AN IMPORTANT ROLE IN
SCIENCE AND MEDICINE AND IN THE
CHANGING OF LIVES I HOPE WITH
THIS QUOTE HERE, "ONE PERSON
WITH A BELIEF IS EQUAL TO A
FORCE OF 99 WHO HAVE ONLY
INTERESTS."
SO MY MOM, PICTURED HERE TOWARDS
THE END OF HER LIFE BUT STILL
VIBRANT, AS I HOPE YOU CAN TELL,
REALLY HAD ONE BELIEF, AND IT
WAS THE BELIEF IN THE DIGNITY OF
EVERY HUMAN BEING.
THAT DIGNITY WAS NOT APPORTIONED
ACCORDING TO A FORMULA, DIGNITY
WAS NOT ACCORDED, ACCORDING TO
SOME HIERARCHY, SOME ACHIEVEMENT
RATIO, SOME WEALTH OR FAME OR
POWER INDICATOR.
IT WAS EQUAL IN EVERYONE, AND
THAT SINGULAR BELIEF ANIMATED
HER GOAL.
HER WHOLE LIFE'S WORK, WHICH WAS
TO PROVE WHAT SHE SO OFTEN FELT
WAS THE MISTAKE THAT CULTURES
AND SOCIETIES AND POLITICAL
INSTITUTIONS MAKE IN NOT SEEING
THE DIGNITY OF THOSE WHO SEEM TO
BE IN SOME WAYS VULNERABLE
AROUND THE MARGINS OF SOCIETY.
ON THE NEXT SLIDE, I'M NOT
SURE -- I CAN'T REMEMBER WHETHER
I'M OPERATING THESE SLIDES OR
NOT BUT MAYBE I AM, I CAN'T
REMEMBER.
LET'S SEE.
NO, I GUESS I'M NOT.
MAYBE SOMEONE -- THERE WE GO.
THE NEXT SLIDE IS A PICTURE OF
MY MOM AND HER BROTHERS AND
SISTERS AND PARENTS.
THIS IS A PICTURE THAT'S
UNREMARKABLE IN MANY WAYS,
REMARKABLE IN A FEW.
FOR THOSE OF YOU WHO GRAVITATE
THEIR EYE LINE WILL GO TO THE
MEN IN THIS PICTURE, PRINCIPALLY
TO PRESIDENT KENNEDY, FUTURE
PRESIDENT KENNEDY IS THE SECOND
FROM THE LEFT.
TO MY UNCLE ROBERT FRANCIS
KENNEDY, WHO'S THE SECOND FROM
THE RIGHT, TO SENATOR EDWARD M.
KENNEDY, THE LITTLE FELLA IN THE
MIDDLE BETWEEN HIS MOM AND HIS
DAD.
A FEW WILL NOTICE THE WOMEN,
SADLY.
AND STILL FEWER WILL NOTICE THE
WOMAN WHO IS STANDING TO THE
LEFT OF PRESIDENT KENNEDY.
THAT'S MY AUNT ROSEMARY KENNEDY,
AND THROUGHOUT HER LIFE, WAS
DIAGNOSED WITH AND LIVED WITH AN
INTELLECTUAL DISABILITY.
I CALL IT AN UNREMARKABLE
PICTURE IN SOME WAYS BUT A
REMARKABLE PICTURE IN OTHERS.
THE NUMBER OF AMERICAN FAMILIES
WHO WHEN THIS PICTURE WAS TAKEN
WHO WOULD HAVE THEIR PICTURE
TAKEN WITH A CHILD WITH AN
INTELLECTUAL DISABILITY IS
SMALL.
THE NUMBER OF FAMILIES WHO WERE
TOLD AT BIRTH, AS MY
GRANDPARENTS WERE TOLD, TO GIVE
UP THEIR CHILD WITH AN
INTELLECTUAL DISABILITY AND
PLACE THAT CHILD IN AN
INSTITUTION, TO FORGET THAT
CHILD, TO LEAVE THE LABOR AND
DELIVERY ROOM AS THOUGH NOTHING
HAD HAPPENED AND RESUME THEIR
LIVES WITHOUT CAUSE OR PAUSE TO
THE CHILD WHO HAD JUST BEEN
BORN, THE NUMBER OF FAMILIES
SKYROCKETED THROUGHOUT THE 20TH
CENTURY.
YOU'LL SEE IN THE NEXT FO
PHOTOGRAPH, IF WE CAN CONTINUE
HERE, A PICTURE OF MY MOTHER AND
HER SISTER.
THIS RELATIONSHIP SHAPED MY
MOTHER THROUGHOUT HER LIFE.
SHE SAW IN HER SISTER A FRIEND,
AN ALLY, A PERSON WHO LIKED TO
GO OUT, A PERSON WHO LIKED TO
TELL JOKES, A PERSON WHO, YES,
SOMETIMES STRUGGLED, WAS
FREQUENTLY DENIED ACCESS TO
SCHOOL, ALMOST NEVER FOUND A
PLACE IN LIFE OUTSIDE OF HER OWN
FAMILY, BUT TO MY MOM, SHE WAS
HER SISTER.
AND MY MOM'S LIFE WAS DEDICATED
TO PROVING THE WORLD WAS WRONG
ABOUT HER SISTER.
THAT WHAT SHE SAW IN HER SISTER
AND WHAT THE WORLD SAW IN HER
SISTER WERE WILDLY DIVERGENT,
AND THAT HER VISION, THE VISION
SHE SAW OF A GIFTED, IMPORTANT,
POWERFUL, LOVEABLE, LOVING
SISTER WAS THE VISION THE WORLD
OUGHT TO SEE.
IT'S NOT THE VISION THE WORLD
SAW.
IN THE NEXT SLIDE, YOU'LL SEE
WHAT SO MANY OF YOU WILL KNOW
ABOUT, THAT YOU'LL SEE A QUOTE
FROM MY MOTHER UPON VISITING THE
INSTITUTIONS, THAT WERE I'M
SORRY TO SAY WERE LARGELY THE
RESULT OF CONSENSUS BETWEEN
MEDICINE AND CULTURE THAT
DISMISSED THESE FOLKS WHO HAVE
AN INTELLECTUAL AND
DEVELOPMENTAL DISABILITY AND
RELEGATED THEM TO A LIFETIME OF
IMPRISONMENT.
HOWEVER THE DECISION BROUGHT THE
LEGAL -- THE POLITICAL AND
MEDICAL APPARATUS FORCING THE
STERILIZATION OF TENS OF
THOUSANDS OF WOMEN
INSTITUTIONALIZED IN THESE
CENTERS AND MY MOTHER LATER IN
HER LIFE, IN THE 40s AND
50s, RECALLED THESE XEN SCENES S
BLEAK AND OVERCROWDED, UNLOVED,
UNWANTED DEAD-END STREETS.
FOR HUMAN BEINGS.
AND I'M SORRY TO SAY, IT WAS
EXACTLY THIS CONTEXT IN WHICH
OUR INSTITUTE, THE INSTITUTE WE
CELEBRATE TODAY WAS BORN.
ON THE NEXT SLIDE, YOU'LL SEE
THE STATUS OF POLITICAL AND
SOCIAL WILL IN THE 1950s,
ELIZABETH BOGGS WROTE, THEY
PRIVATELY DOUBTED AT THE
NATIONAL INSTITUTE OF MENTAL
HEALTH WHETHER $250,000 COULD BE
SPENT.
AND THE FEDERAL GOVERNMENT'S
ROLE IN INTELLECTUAL DISABILITY
WAS SO SMALL THAT THE QUITE
SMALL KENNEDY FOUNDATION
ESTABLISHED BY MY GRANDFATHER
SURPASSED HIGHER INFRASTRUCTURE
OF THE FEDERAL GOVERNMENT IN A
SINGLE GIFT.
SO THERE WAS NEXT TO NOTHING,
IMAGINE BEING A MOM OR A DAD,
KNOCKING ON THE DOOR.
IS THERE SOMEONE, IS THERE
ANYONE?
THAT GLORIOUS HISTORY WE JUST
HEARD OF THIS INSTITUTE WOULD
HAVE BEEN COMPLETELY
UNIMAGINABLE TO A MOM OR A DAD
IN THE 1940s OR 50s, OR EVEN
60s.
ON THE NEXT SLIDE, YOU'LL SEE A
BRIEF MENTION OF DR. JAMES
SHANNON.
I DON'T PUT HIM HERE TO STICK
HIM OUT AT DR. TABAK'S
PREDECESSOR BUT TO REMIND HIM OF
WHAT WE SAW, THIS IS ALL OF US,
THERE AREN'T ANY MAJOR PROBLEMS
IN CHILDREN.
NEXT SLIDE.
SO WHEN PRESIDENT KENNEDY WAS
ELECTED ABOUT THREE MILES FROM
WHERE THE NATIONAL INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT SITS TODAY, MY MOM
STARTED A SUMMER CAMP, AND IN
THESE PICTURES, YOU CAN SEE MY
MOM'S FAVORITE ROLE IN LIFE,
WHICH WAS TO TEACH SWIMMING.
1962, CHILDREN FROM INSTITUTIONS
CAME UP ROCKVILLE PIKE, PAST THE
NIH AND PULLED THEM TO EDSON
LANE WHERE WE WERE VERY BLESSED
TO HAVE SEVERAL ACRE, MY MOM
CONVERTED IT INTO A SUMMER CAMP.
NOT TO BE VAIN, BUT WHERE THE
FLAG IS BEING RAISED THERE,
YOURS TRULY, JUST TO PROVE I
WASN'T COMPLETELY MISSING FROM
THE NARRATIVE.
BUT IT'S IMPORTANT TO NOTE THAT
MY MOM MADE ME INTO A CAMPER AT
THE AGE OF 4.
SO THAT I WOULD GROW UP LEARNING
TO PLAY WITH MY PEERS WITH
INTELLECTUAL OR DEVELOPMENTAL
CHALLENGE, SEAMLESSLY, HAPPILY U
KNOW, EXCITEDLY.
I LOOKED FORWARD TO CAMP.
THERE WAS NO STIGMA, YET, IN
THAT TIME.
AND THERE WAS THIS GREAT
EXPERIMENT, I WOULD SAY, ALMOST
AN EXPERIMENT IN HUMAN
POSSIBILITY GOING ON, RIGHT
THERE, A STONE'S THROW FROM THE
INSTITUTES TODAY.
ON THE NEXT SLIDE, YOU'LL SEE
WHAT THAT EXPERIMENT MEANT WHEN
IT CAME TO MY MOM'S DEALING WITH
THE PRESIDENT OF THE UNITED
STATES.
SO YOU CAN SEE THAT THE
PRESIDENT'S PANEL CONVENED IN
1962, REPORTED IN ONE SHORT
MONTH, DR. BIANCHI -- EXCUSE ME,
ONE SHORT YEAR, IT TOOK, FOR THE
REPORT, SCANNING THE LANDSCAPE
OF WORK BEING DONE AROUND THE
WORLD, THE URGENCY OF A FEDERAL
PROGRAM OF ACTION IN THE FIELD
OF INTELLECTUAL DEVELOPMENTAL
DISABILITY.
NICHD'S CREATION WAS PART OF
THAT ACTION, THE MATERNAL AND
CHILD HEALTH ACT, THE MENTAL
RETARDATION FACILITIES AND
COMMUNITY MENTAL HEALTH CENTERS
CONSTRUCTION ACT, THE MENTAL
RETARDATION RESEARCH CENTERS,
THE UNIVERSITY AFFILIATED
CENTERS, NOW THE UCEDDs TODAY,
THERE'S 67, STILL FUNDED, STILL
SUPPORTED BY THE ENTERPRISE AT
BOTH THE INSTITUTES AND OTHER
PARTS OF THE FEDERAL GOVERNMENT,
CREATING A NATIONWIDE COMMITMENT
TO HUMAN POSSIBILITY.
NOT JUST TO CURES, NOT JUST TO
THE ADVANCEMENT OF SCIENCE BUT
TO THE ADVANCEMENT OF SCIENCE
AND SERVICE, TO THE DIGNITY AND
POSSIBILITY OF EVERY CHILD.
NO EXCEPTIONS, NO HIERARCHIES,
NOBODY EXCLUDED.
I DON'T MEAN TO CLAIM ALL THIS
FOR MY MOM BUT I DO MEAN TO
SUGGEST THAT ONE PERSON'S BELIEF
CAN START TO TRIGGER AND
CATALYZE ACTION ACROSS A WHOLE
RANGE OF POSSIBILITIES.
WE'LL CONTINUE HERE AND ALLOW ME
JUST TO GO THROUGH A LITTLE BIT
THE EXCITEMENT THAT MY MOM
GENERATED OUTSIDE THE WALLS ON
THE NEXT SLIDE OF NICHD.
YOU'LL SEE A PICTURE OF THE 1968
CHICAGO SOLDIER FIELD.
THIS IS THE FIRST OLYMPICS GAMES
WHERE MY MOM IS READING THE OATH
OF THE SPECIAL OLYMPICS
MOVEMENT: LET ME WIN BUT IF I
CANNOT WIN, LET ME BE BRAVE IN
THE ATTEMPT.
ON THE NEXT SLIDE, YOU'LL SEE
WHAT BRAVERY LOOKS LIKE.
IF WE CAN GO TO THE NEXT SLIDE,
YOU'LL SEE ONE SINGULAR SCENE
HERE, 100,000 SEATS, 99,000
EMPTY ONES.
YOU GO FOR IT, REGARDLESS,
REGARDLESS.
PEOPLE DIDN'T PAY ATTENTION, YOU
GO FOR IT.
PEOPLE DON'T SEE WHAT YOU SEE,
THEY DON'T SEE MOST OF THE
COMPETITORS ON THIS FIELD WERE
LICENSED AND AUTHORIZED TO LEAVE
STATE INSTITUTIONS BY FEDERAL
AUTHORITY, STATE AUTHORITIES AND
LEGAL AUTHORITIES.
NEEDING PERMISSION TO GO TO
CHICAGO'S SOLDIER FIELD TO RUN
100 METERS, BECAUSE THEY WERE
COMING AS WARDS OF THE STATE.
ON THE BOTTOM LEFT, I WON'T GO
INTO A LOT OF DETAIL, YOU'LL SEE
A LOT OF PEOPLE SITTING ON THE
SIDE OF A MAKESHIFT POOL.
THAT'S BECAUSE THE POOL HAD
LIFEGUARDS, THINKING CHILDREN
WOULD DROWN IF THERE WEREN'T
LIFEGUARD EVERY 3 TO 4 FEET.
I KNOW I'M ABOUT TO RUN OUT OF
TIME BUT THIS IS PHOTOGRAPHS
FROM THE HISTORY OF THE SPECIAL
OLYMPICS MOVEMENT.
THIS IS AJAR ACILLA ON THE
WINNER'S STAND.
IN THIS POSE THAT JUST, TO ME,
SUGGESTS A CERTAIN SENSE OF
DIGNITY, TRIUMPH, BELIEF,
HAPPINESS MAYBE EVEN, PRIDE, AND
SHE CAME IN SEVENTH.
MOST OF US DON'T HAVE THIS KIND
OF PICTURE IN OUR HOUSE.
WE DON'T CELEBRATE OUR SEVENTH
PLACE FINISHES, BUT AJARA,
TOGETHER WITH THE SIX OR SO
MILLION ATHLETES AROUND THE
WORLD OF SPECIAL OLYMPICS
SOMEHOW IS REMINDING US OF THIS
FUNDAMENTAL BELIEF, THAT WHEN
YOU DO YOUR BEST, YOU HAVE WON.
THE SPECIAL OLYMPICS MOVEMENT IS
ESTABLISHED NOT TO FIND THE
BEST, BUT TO ENABLE EVERYONE TO
DO THEIR BEST.
AND IN THE COMPETITION TO DO
YOUR BEST, EVERYONE CAN WIN.
AND WHEN THOSE OF US AMONG US
WHO STRUGGLED WITH THE GREATEST
ODDS DO THEIR BEST, IT IS AN
ICONIC MOMENT IN HUMAN
EXPERIENCE, IN MY VIEW.
WE'LL CONTINUE ON HERE AND I'LL
START TO WRAP UP WITH A FEW
STATEMENTS THAT REMIND US
THAT -- DR. BIANCHI ALLUDED TO
SOME OF THE STRUGGLES STILL IN
FRONT OF US.
CHILDREN DO SUFFER FROM THE
HEALTH INEQUITIES, DR. TABAK
SAID THE SAME, SEVEN TIMES
HIGHER MORTALITY RATE, SIX TIMES
MORE LIKELY -- THE DATA ON LIFE
EXPECTANCY SHOULD SHOCK US.
NOT AS A FUNCTION OF A PRIMARY
DIAGNOSIS, BUT AS A FUNCTION OF
NEGLECT WITHIN OUR SOCIAL AND
CULTURAL AND POLITICAL SYSTEMS.
THIS IS THE MANDATE OF THIS
INSTITUTE.
I KNOW ITS LIFECYCLE AND I KNOW,
MY GOODNESS, I'VE HEARD ON
KOWRNTION I WAS R -- ONCOUNCIL,E
INSTITUTE OF INTELLECTUAL
DISABILITIES BUT IT HAS TO BE AT
LEAST IN PART THAT.
IT MUST BE IF IT WILL REPRESENT
THE FULL CYCLE OF HUMAN
EXPERIENCE.
NO OTHER INSTITUTE OWNS THIS
MANDATE.
IT WAS A SACRED TRUST THAT THE
COUNTRY HAS PLACED IN THE
SCIENTISTS IN NICHD TO DO
RESEARCH ON BEHALF OF AND DO
CLINICAL TRANSLATION SUPPORT
SERVICE ON BEHALF OF THIS
POPULATION.
WE'LL GO TO THE NEXT SLIDE.
WE ARE STILL RECOGNIZING THE
LACK OF PREVENTIVE CARE.
I'M GOING TO RUN OUT OF TIME SO
I'M GOING TO GO TO THE NEXT
SLIDE.
THIS IS DATA ESPECIALLY
DR. TABAK YOU WILL KNOW ON
DENTAL PROBLEMS IN THIS
POPULATION.
THEY'RE ENORMOUS, SCANDALOUS, I
DARE SAY.
THE NEGLECT THAT OUR BROTHERS
AND SISTERS WITH INTELLECTUAL
AND DEVELOPMENTAL DISABILITIES
FACE IN THE SYSTEM.
BUT WE DON'T HAVE THE CARE, WE
DON'T HAVE THE DATA, WE DON'T
HAVE THE CAPACITY TO UNDERSTAND
THE LIFE COURSE OF SO MANY OF
THESE CHILDREN.
I KNOW WE'RE MAKING PROGRESS ON
THESE THINGS.
THE NATIONAL CHILDREN'S STUDY --
BUT THE WORK IS URGENT.
IT LIFE AND DEATH FOR THIS
POPULATION.
UNSEEN OFTEN, UNNOTICED MANY
TIMES, BUT LIFE AND DEATH AND
THEREFORE A MANDATE TO ALL OF
US.
ON THE NEXT SLIDE, WE'LL START
TO WRAP UP, WITH JUST A LITTLE
BIT OF INSPIRATION, I THINK WE
HAVE A NEW GENERATION IN FRONT
OF US.
THIS IS THE WORK THAT SPECIAL
OLYMPICS DOES TO EDUCATE YOUNG
PEOPLE.
WITHOUT INTELLECTUAL
DISABILITIES.
WITH EMPATHY AND
PERSPECTIVE-TAKING AND
COURAGEOUS ACTION AND UNIVERSAL
DIGNITY TO PROMOTE A CULTURE OF
INCLUSION.
ON THE NEXT SLIDE, YOU'LL SEE
THE WORDS THESE YOUNG PEOPLE
WRITE WHEN THEY ARE ASKED TO SAY
WHAT SHOULD OUR SCHOOL MESSAGE
BE, AND THIS IS THE YOUNG PEOPLE
OF A SCHOOL IN RHODE ISLAND.
"I PLEDGE TO LOOK FOR THE
LONELY, THE ISOLATED, THE LEFT
OUT, AND THE CHALLENGED AND THE
BULLIED.
HOW PROUD MY MOTHER WOULD BE OF
THIS NEXT GENERATION AND I HOPE
ALL OF US WOULD BE.
ON THE LAST SLIDE, LET ME JUST
THANK ALL OF YOU.
THIS IS A PICTURE ON THE RIGHT
OF DONAL PAIGE, AN ATHLETE IN
IRELAND WITH WHAT WE MIGHT CALL
SEVERE OR EVEN PROFOUND
INTELLECTUAL DISABILITY AFTER HE
WON HIS MEDAL IN THE BEANBAG
LIFT.
A CHAMPION FOR HIS FAMILY, HIS
COMMUNITY, HIS COUNTRY.
EVERYONE CAN HAVE THIS SAME, I
HOPE, BELIEF.
NOT JUST INTERESTS, BUT BELIEFS.
AND WITH THESE BELIEFS, THE
CENTER, THE INSTITUTE ITSELF AND
THE RELATED INSTITUTES WILL
CONTINUE TO MAKE A LIFE CHANGING
DIFFERENCE.
THANK YOU ALL VERY MUCH.
>>PLEASE ENJOY THE FOLLOWING
VIDEOS HIGHLIGHTING NICHD'S
MISSION STATEMENT AND THE WORK
OF THE HUMAN PLACENTA PROJECT.
WE ALSO HAVE A SPECIAL MESSAGE
FROM CONGRESSWOMAN LAUREN
UNDERWOOD.
>>THE MISSION OF THE NICHD --
>>OUR REAL MISSION IS RESEARCH
AND TRAINING.
>>THE MISSION OF NICHD IS TO --
I FORGOT.
>>I KNOW THERE'S A PART IN
THERE ABOUT WOMEN.
>>THE MISSION OF NICHD IS THAT
A PRN IS B PERSON IS BORN HEALTD
WANTED.
>>THAT WOMEN ARE FREE FROM THE
ILL EFFECTS OF REPRODUCTIVE
PROCESSES.
>>HARMFUL EFFECTS OF THE
REPRODUCTIVE PROCESSES.
>>ANY ADVERSE CONSEQUENCES OF
REPRODUCTIVE PROCESSES.
>>NO NEGATIVE REPERCUSSIONS OF
REPRODUCTION?
>>THAT EVERYONE ACHIEVES THEIR
FULL POTENTIAL.
>>AND THAT ALL CHILDREN WILL
HAVE AN EQUAL OPPORTUNITY.
>>THAT ALL CHILDREN ARE GIVEN
THE POTENTIAL TO LIVE HEALTHY,
PRODUCTIVE, INDEPENDENT LIVES.
>>FREE FROM --
>>FREE OF DISEASES AND
DISABILITY.
>>AND THERE WAS MORE -- THE
THIRD PART HAS SOMETHING TO DO
WITH REHABILITATION.
>>SOMETHING ABOUT OPTIMAL
REHABILITATION.
>>REHABILITATION IS PRETTY MUCH
THE MOST IMPORTANT THING HERE.
>>WE ARE VERY COMMITTED TO
REHABILITATION, BUT I CAN NEVER
REMEMBER THAT PART.
>>IN ADDITION, THE MISSION IS
TO MAKE SURE THAT EVERY PERSON
LIVES PRODUCTIVELY, HEALTHY
THROUGH OPTIMAL REHABILITATION.
>>THROUGH OPTIMAL
REHABILITATION.
>>THROUGH OPTIMAL
REHABILITATION.
>>THAT'S IT!
>>THE PLACENTA IS THE RODNEY
DANGERFIELD OF ORGANS.
IT REALLY GETS NO RESPECT.
MOST PEOPLE DON'T KNOW WHAT THE
PLACENTA IS UNLESS THEY HAVE
ACTUALLY SEEN ONE.
AND THEY REALLY DON'T APPRECIATE
ITS MANY, MANY FUNCTIONS.
AND ITS ESSENTIAL NATURE TO A
HEALTHY LONG-TERM LIFE.
>>WHEN YOU STUDY MAGIC, WHEN
YOU LEARN HOW A TRICK IS DONE
YOU'RE LIKE THAT'S COOL, CLEVER.
THE PLACENTA, THE MORE YOU LEARN
ABOUT IT, THE MORE INCREDIBLE IT
IS.
IT'S LIKE EACH LAYER OF INSIGHT
THAT WE GET MAKES IT AN EVEN
MORE REMARKABLE STRUCTURE TO
STUDY.
RIGHT NOW, UNFORTUNATELY, THE
WAY WE CAN TELL WHEN THERE'S A
PROBLEM WITH A PREGNANCY IS WHEN
YOU SEE LATE-STAGE DAMAGE.
>>WHAT YOU WANT IS THE
INFORMATION WHEN YOU CAN
INTERVENE, AND IF YOU HAVE A
SIGN THAT THE PLACENTA IS NOT
HEALTHY, PERHAPS YOU CAN CHANGE
MANAGEMENT OR CHANGE TREATMENT
TO IMPROVE OUTCOME.
>>SO WE TAKE MR IMAGES, SEGMENT
THEM BY HAND AND PRINT ON A 3D
PRINTER ALL THE DIFFERENT PARTS
AND WE FILL UP DIFFERENT
CAVITIES WITH DIFFERENT
MATERIALS TO MIMIC THOSE OF THE
BODY.
>>I HOPE WE'LL BE ABLE TO HAVE
METRICS OF PLACENTA HEALTH TO
ASSESS HOW WELL IT SERVING THE
FETUS.
>>I THINK THIS COULD REALLY
TRANSFORM HOW WE MONITOR
PREGNANCIES.
WHEN YOU HAVE THE LEADERSHIP
SAYING THIS IS OUR PRIORITY, IT
MOBILIZES PEOPLE, IT UNITES
THEM, IT CAUSES PEOPLE TO START
WORKING TOGETHER AS A TEAM.
THERE'S NO QUESTION YOU
GET DEGREES OF SYNERGY THAT ARE
JUST OTHERWISE IMPOSSIBLE.
>>HI, EVERYBODY.
I'M CONGRESSWOMAN LAUREN
UNDERWOOD, AND I HAVE THE HONOR
OF REPRESENTING ILLINOIS' 14TH
CONGRESSIONAL DISTRICT.
I WOULD LIKE TO THANK DR. DIANA
BIANCHI FOR THE INVITATION TO
JOIN TODAY'S SYMPOSIUM AND FOR
HER TREMENDOUS LEADERSHIP AT THE
EUNICE KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
DEVELOPMENT AND TO ALL THE
RESEARCHERS, SCIENTISTS AND
STAFF AT NICHD.
CONGRATULATIONS ON 60 YEARS OF
EXCELLENCE IN SCIENTIFIC
ENDEAVORS TO UNDERSTAND HUMAN
DEVELOPMENT, IMPROVE
REPRODUCTIVE HEALTH, ENHANCE THE
LIVES OF CHILDREN AND
ADOLESCENTS AND OPTIMIZE
ABILITIES FOR ALL.
YOUR WORK HAS SAVED LIVES,
SUPPORTED FAMILIES AND
STRENGTHENED OPPORTUNITIES
ACROSS THE COUNTRY AND AROUND
THE WORLD.
TO EVERYONE WHO HAS CONTRIBUTED
TO THIS RICH HISTORY, I WANT TO
SAY THANK YOU.
I AM SO PROUD TO BE A CHAMPION
IN CONGRESS TO SUPPORT YOUR
CRITICAL MISSION.
AS A MEMBER OF THE HOUSE
COMMITTEE ON APPROPRIATIONS, ONE
OF MY HIGHEST PRIORITIES HAS
BEEN TO SECURE ROBUST AND
SUSTAINED FUNDING FOR OUR
NATION'S BIOMEDICAL RESEARCH
INFRASTRUCTURE AT NIH,
PARTICULARLY TO SUPPORT YOUR
WORK AT NICHD.
AND AS A CO-FOUNDER AND CO-CHAIR
OF THE BLACK MATERNAL HEALTH
CAUCUS IN CONGRESS, I HAVE SEEN
JUST HOW IMPORTANT THAT WORK IS.
AS YOU KNOW, THE UNITED STATES
HAS THE HIGHEST MATERNAL
MORTALITY RATE OF ANY HIGH
INCOME COUNTRY OF THE WORLD AND
THE MAJORITY OF THESE DEATHS ARE
PREVENTABLE.
WE ALSO SEE SIGNIFICANT RACIAL
AND ETHNIC DISPARITIES AND
MATERNAL HEALTH OUTCOMES AND
UNACCEPTABLE REALITY THAT
DEMANDS A BOLD, DATA-DRIVEN,
EVIDENCE-BASED POLICY RESPONSE.
TO DO THAT, WE NEED DATA TO
UNDERSTAND THE CAUSES OF ADVERSE
OUTCOMES, AND WE NEED EVIDENCE
ON THE EFFECTIVENESS OF
INTERVENTIONS TO SAVE LIVES AND
ADVANCE BIRTH EQUITY.
NOW THAT'S WHERE YOU COME IN.
THE RESEARCH THAT NICHD HAS LED
FOR THE PAST SIX DECADES HAS
INFORMED THE INITIATIVES THAT WE
HAVE LED WITH THE BLACK MATERNAL
HEALTH CAUCUS TO TACKLE THIS
CRISIS.
WHEN NIH LAUNCHED THE IMPROVE
INITIATIVE SPEARHEADED BY NICHD,
IT SUPPORTS RESEARCH FOCUS ON
ROW DUESING PREVENTABLE CAUSES
OF PREGNANCY-RELATED DEATHS,
IMPROVING PERINATAL HEALTH AND
ELIMINATING DISPARITIES IN
MATERNAL HEALTH OUTCOMES FOR
BLACK, NATIVE, HISPANIC AND AAPI
PEOPLE AS WELL AS THOSE WITH
ELEVATED RATES OF MATERNAL
MORTALITY.
IT WAS BORN OUT OF A
CONVERSATION THAT DR. BIANCHI
AND I HAD SHORTLY AFTER I WAS
FIRST SWORN INTO CONGRESS.
AND THE IDEA CONTINUED TO GROW
AFTER DR. BIANCHI JOINED OTHER
NIH DIRECTORS AND DR. FRANCIS
COLLINS AT A BIPARTISAN MEETING
WITH THE BLACK MATERNAL HEALTH
CAUCUS IN 2019.
FROM THERE, THE IMPROVE
INITIATIVES RESEARCH AGENDA WAS
DEVELOPED AND IMPLEMENTED AND IN
THE YEARS SINCE, THIS RESEARCH
HAS EXPANDED SIGNIFICANTLY,
ACCELERATED IN THE CURRENT
FISCAL YEAR BY THE FIRST EVER
DIRECT APPROPRIATION FOR
IMPROVED AN UNPRECEDENTED
$30 MILLION INVESTMENT IN
MATERNAL HEALTH RESEARCH.
IN APRIL 2022, I INTRODUCED THE
BIPARTISAN NIH IMPROVE ACT TO
MAINTAIN THE STRONG FUNDING
LEVEL YEAR AFTER YEAR ENSURING
THAT YOUR TEAM HAS THE RESOURCES
YOU NEED TO CONTINUE TO CARRY
OUT THIS URGENT WORK.
THE NIH IMPROVE ACT COMPLEMENTS
THE BLACK MATERNAL HEALTH ACT, A
SWEEPING SET OF BILLS THAT I
INTRODUCED TO BUILD ON EXISTING
LEGISLATION AND COMPREHENSIVELY
ADDRESS EVERY DRIVER OF MATERNAL
MORTALITY, MORBIDITY AND
DISPARITIES.
THE INVESTMENTS WILL GROW AND
DIVERSIFY THE PERINATAL
WORKFORCE, ADDRESS
COMMUNITY-BASED ORGANIZATIONS,
EXPAND ACCESS TO DIGITAL TOOLS
AND IMPROVE CARE FOR PEOPLE WITH
MATERNAL MENTAL HEALTH
CONDITIONS AND SUBSTANCE USE
DISORDERS.
THESE EVIDENCE-BASED PROGRAMS
AND OTHERS THROUGHOUT ARE BASED
ON FINDINGS FROM THE RESEARCH
THAT YOU CARRY OUT AND FUND AT
NICHD.
TOGETHER, WE ARE DOING THE WORK
THAT IS REQUIRED TO PREVENT
MATERNAL DEATH AND DISPARITIES,
AND TO MAKE THE UNITED STATES
THE SAFEST COUNTRY IN THE WORLD
TO GIVE BIRTH.
THANK YOU FOR YOUR COMMITMENT TO
THIS CAUSE.
AND FOR THE HONOR OF JOINING YOU
AT TODAY'S SYMPOSIUM.
HERE'S TO 60 YEARS OF INSPIRING,
IMPACTFUL, LIFE-SAVING WORK, AND
MANY YEARS TO COME.
I LOOK FORWARD TO SEEING YOU
AGAIN SOON, BUT UNTIL THEN, TAKE
GOOD CARE OF YOURSELVES.
>>LET'S MOVE INTO OUR FIRST
SESSION OF THE DAY.
PROMOTING HEALTHY PREGNANCIES,
MODERATED BY DR. CAROLINE
SIGNORE.
DEPUTY DIRECTOR OF THE NICHD
DIVISION OF EXTRAMURAL RESEARCH.
>>GOOD MORNING, ALL, AND
WELCOME!
I'M SO EXCITED TO KICK OFF THIS
SYMPOSIUM WITH THE PROMOTING
HEALTHY PREGNANCIES SYMPOSIUM.
LET'S JUST GET RIGHT INTO IT.
OUR FIRST SPEAKER TODAY IS
DR. ALFRED ABUHAMAD.
HE CURRENTLY SERVES AS INTERIM
PRESIDENT, PROVOST AND DEAN AND
PROFESSOR OF OBSTETRICS AND
GYNECOLOGY AND RADIOLOGY AT
EASTERN PERDUE MEDICAL SCHOOL,
WHERE HE HAS BEEN ON FACULTY FOR
29 YEARS.
HE IS PAST PRESIDENT OF THE
SOCIETY FOR MATERNAL FETAL
MEDICINE, THE PERINATAL QUALITY
FORUM AND THE AMERICAN INSTITUTE
OF ULTRASOUND IN MEDICINE.
HE IS WELL-KNOWN FOR HIS WORK IN
ULTRASOUND, PRENATAL DIAGNOSIS,
FETAL EPICARDIOGRAPHY, GLOBAL
OUTREACH AND PATIENT SAFETY.
PLEASE JOIN ME IN WELCOMING
DR. ABUHAMAD.
>>THANK YOU, CAROLINE, FOR THIS
KIND INTRODUCTION.
I WOULD LIKE TO TAKE THIS
OPPORTUNITY TO THANK DR. BIANCHI
FOR IB VITALLING ME TO SPEAK AND
SHARE SOME OF OUR RESEARCH, AND
CERTAINLY FOR THE NICHD FOR
THEIR SUPPORT OVER TIME.
MY TALK IS ON ULTRASOUND
INNOVATION AND PLACENTAL
EVALUATION.
AS DISCLOSURES, I'M RECIPIENT OF
THE NICHD GRANT FOR THE STUDY OF
THE HUMAN PLACENTA USING
ULTRASOUND.
I'M ALSO ON THE ADVISORY BOARD
OF SONOSIM, TRICE IMAGING AND
MORE.
THERE'S A LOT OF EVIDENCE
ACCUMULATING TO SUGGEST THAT
ALTERATIONS IN PLACENTAL
MICROVASCULAR DEVELOPMENT EARLY
ON IN PREGNANCY LEADS TO -- AT
LEAST IN PART TO SOME PREGNANCY
COMPLICATIONS THAT HAPPENS LATER
ON, SUCH AS PREECLAMPSIA, FETAL
GROWTH RESTRICTION, PRETERM
LABOR, STILLBIRTH AND NEONATAL
MORBIDITY.
AND THIS LACK OF ADAPTATION IS
RESULTANT FROM THE LOSS OF THE
INNOVATION OF THE
CYTOTROPHOBLASTS STARTING FROM
THE FIRST TRIMESTER INTO THE
SECOND TRIMESTER THAT MAKES THE
SPIRAL ARTERY VESSELS MAXIMALLY
DILATED TO REDUCE IMPEDANCE OF
FLOW AND, AS IMPORTANT, REDUCING
THE PEAK VELOCITY OF FLOW TO
PROTECT THE MICRO ARCHITECTURE
OF THE DEVELOPING PLACENTA EARLY
ON.
WE ALSO KNOW THAT IN COMPLICATED
PREGNANCIES, LOOKING AT THE
SPECIMEN, TYPICALLY YOU SEE
INCREASE IN PLACENTAL
INFARCTION, VILLUS DENSITY
ARRANGEMENTS, AND CALCIUM
CONTENT AND FIBROSIS THAT LEADS
TO THE ALTERATIONS IN PLACENTAL
TISSUE STRUCTURE ITSELF.
AND WE KNOW THAT ALTERATIONS IN
PLACENTAL TISSUE STRUCTURE CAN
POTENTIALLY LEAD TO CHANGES IN
ACOUSTIC PROPERTIES OF PLACENTAL
TISSUE THAT COULD BE --
ULTRASOUND TECHNIQUES.
SO -- AND ALSO THERE'S
ACCUMULATING EVIDENCE THAT SHOWS
THAT PLACENTAL DYSFUNCTION THAT
LEADS TO THESE LONG-TERM
COMPLICATIONS, AT LEAST IN PART
HAVE ITS ORIGIN IN EARLY
GESTATION.
NOW, ULTRASOUND, AT LEAST WE
BELIEVE, IS ONE OF THE MOST
OPTIMAL IMAGING MODALITIES FOR
PLACENTAL EVALUATION, ESPECIALLY
IN EARLY GESTATION, AND IT IS
WELL ADAPTED TO BE USED FOR THAT
CAUSE.
IT IS NONINVASIVE, IT'S DONE IN
REALTIME AND WE HAVE THE ABILITY
TO QUANTITATE THE FLOW.
IT'S WIDELY AVAILABLE AND
PORTABLE TO THE PATIENT,
RELATIVELY LOW COST, RELATIVELY
SAFE WITH NO IONIZING RADIATION,
AND YOU CAN START EYE PLIED FROM
EARLY PREG SOOND' IT'S ALREADY
INCORPORATED IN CLINICAL CARE.
NOW ULTRASOUND IS CONTINUOUSLY
EVOLVING OVER TIME, AND THERE
ARE NOVEL TOOLS THAT ARE
AVAILABLE TODAY ON A LOT OF
HIGH-END ULTRASOUND SYSTEMS THAT
COULD BE ADAPTED TO PLACENTAL
EVALUATION EARLY IN PREGNANCY.
NOW, JUST LOOKING AT WHERE IS
ULTRASOUND TODAY, YOU CAN SEE
THAT IT HAS CHANGED
SUBSTANTIALLY, EVEN OVER THE
PAST 10 TO 15 YEARS.
WE CAN SEE AT 26 WEEKS LOOKING
AT BRAIN ANATOMY IN GREAT
DETAILS, LOOKING AT THE MICRO
VASCULATURE, AT 18 WEEKS LOOKING
AT THE VENOUS SYSTEM COMING TO
THE LEFT ATRIUM FROM THE
PULMONARY VENOUS SYSTEM, AND YOU
CAN SEE AT 23 WEEKS HERE A
DILATED KIDNEY SHOWING THE RENAL
PELVIS AND DILATED URETER.
VASCULATURE IN THE FETAL BRAIN
AT 20 WEEKS AND 13 WEEKS.
AND ALSO WE HAD THE ABILITY TO
ACQUIRE VOLUME.
THIS IS AT 13 WEEKS PLACENTA AND
3D ACQUIRED FROM ONE OF OUR
STUDY SUBJECTS OF PREGNANCY.
SO THE NOVEL ULTRASOUND TOOLS
NOW ALLOW US TO LOOK AT THE
PLACENTAL MICRO VASCULATURE
LOOKING AT THE MATERNAL SIDE OF
THE PLA 16 TA PLACENTA AND WE CN
QUANTITATE THE FLOW USING SEC
PRAL DOPPLER TECHNIQUES.
WE CAN ALSO ASSESS THE TISSUE
DENSITY BY USING SHEER WAVE,
THAT PULSE AS IT TRAVERSES THE
TISSUE CAN INCREASE IN SPEED
BASED ON THE DENSITY OF THE
TISSUE.
AND USING THE VELOCITY OF THE
SPEED OF THE PULSE, YOU CAN
ACTUALLY DETERMINE THE SHEER
WEIGHT OR DENSITY OF PLACENTAL
TISSUE, MATERNAL LIVER AND ADULT
LIVER IN CASES OF FIBROSIS.
HERE YOU SEE ON THE LEFT SIDE
ANTERIOR PLACENTA AT 13 WEEKS
AND ON THE RIGHT SIDE THE POST
TORE PLACENTA ALSO.
WE CAN ALSO USE SOPHISTICATED
TECHNIQUES TO ALLOW US TO
IDENTIFY MICRO CALCIFICATIONS IN
THE PLACENTA STARTING EARLY ON
IN GESTATION.
THIS TECHNOLOGY WAS ALSO ADAPTED
FROM LOOKING AT THE BREAST
CANCER SMALL TUMORS AND
ASSESSING THE MICRO VASCULATURE
IN THEM WITH REGARDS TO THE
PRESENCE OR ABSENCE OF CANCER.
THERE ARE MORE MODERN AND NOVEL
TECHNIQUES ALSO AVAILABLE TO US
HERE.
THIS IS DENSITY ANALYSIS OF THE
ULTRASOUND BEAM THAT ALLOWS YOU
TO ASSESS THE HOMOGENEITY OF THE
SPECKLE PATTERN OF THE PLACENTA.
THIS IS A HOMOGENEOUS PLACENTA
AT 37 WEEKS, AND YOU CAN
QUANTITATE THIS BY DESIGNATING
THE AREA OF INTEREST AND GETTING
NUMERICAL VALUES THAT YOU CAN
COMPARE HOMOGENEITY FROM ONE
PLACENTA TO THE OTHER.
ALSO WE CAN ASSESS THE LOSS OF
ENERGY OF THE ULTRASOUND BEAM
THAT COMES THROUGH WITH SOME
MODERN SOPHISTICATED SEC NEEK TE
CALLED ATTENUATION IMAGING.
IT LOSES DUE TO ABSORPTION OF
THE HEAT OR SCATTERING OF THE
WAVE ITSELF AND YOU CAN
NORMALIZE THESE VALUES THAT
GIVES YOU SOME -- I CAN SEE THIS
AS AN ABNORMAL PLACENTA AND YOU
CAN SEE THE VARIATIONS IN THE
COLOR AND THE QUANTIFICATION OF
THAT.
NOW WE HAVE USED THESE
ULTRASOUND TECHNIQUES TO STUDY
THE PLACENTA STARTING IN 2015
ONWARD, AND THIS STUDY WAS A
COLLABORATION BETWEEN EDMS AND
UTMD WITH MY CO-PI, DR. GEORGE
SAADE.
SO WHAT WE'VE DONE IS, THIS WAS
ALSO DONE ON THE CANON MEDICAL
COLLABORATION.
THIS WAS A PROSPECTIVE
LONGITUDINAL COHORT STUDY WHERE
WE RECRUITED 610 PREGNANCIES
OVER FIVE YEARS.
WE DID LONGITUDINAL EVALUATION
FROM 13 WEEKS TO TERM, WE DID A
TOTAL OF EIGHT ULTRASOUND
EXAMINATIONS PER PREGNANCY.
OUR PRIMARY OUT COME WAS ANY
PRETERM DELIVERY AT LESS THAN 37
WEEKS AND THE GOAL WAS TO
DEVELOP A MULTIVARIATE MODEL TO
PREDICT A PRETERM DELIVERY LESS
THAN 37 WEEKS LOOKING AT THE
ULTRASOUNDS IN EARLY GESTATION.
THIS SLIDE SHOWS EVERY TWO WEEKS
FROM 12 TO 13 WEEKS, THEN EVERY
FOUR WEEKS UNTIL DELIVERY.
WE LOOKED AT FETAL BIOMETRY, WE
LOOKED AT 3D VOLUMES OF FETAL
ORGANS AND THE PLACENTA.
WE LOOKED AT THE SPIRAL
ARTERIES, THE INTERVILLOUS
ARTERIOLES, UTERINE ARTERY,
FETAL CARDIAC FUNCTION.
WE ALSO ASSESSED PLACENTAL
TISSUE DENSITY BY LOOKING AT
SHEAR-WAVE, PRESENCE OF MICRO
VASCULATURE, PLACENTAL INTENSITY
ANALYSIS AND ATTENUATION
IMAGING, MATERNAL BLOOD FOR
STORAGE AND ALSO COLLABORATED
WITH THE ENVIRONMENTAL DIVISION
OF THE NIH TO REALLY ASSESS THE
PRESENCE O -- OTHERS ARE BEING
STUDIES AS WE'RE SPEAKING.
SO WHAT WE'VE DONE WITH SPIRAL
ARTERIES USING SMI, SUPERB MICRO
MICROVASCULAR IMAGING, WE
IDENTIFIED PLACENTAL SPIRAL
ARTERIES, AND WE AVERAGED SIX
SPIRAL ARTERIES PER ULTRASOUND
TO ASSESS FOR THE PEAK SYSTOLIC
VELOCITY AND THE P.I.
ON THE FETAL SIDE, WE USED AGAIN
SUPERB MICROVASCULAR IMAGING TO
IDENTIFY THE FETAL PLACENTAL
ARTERIOLES, WE MEASURED THEIR
NUMBER, THE AND WE AVERAGE WOULD
FOR THE MEASUREMENT OF THE PEAK
VELOCITY.
WE ALSO MEASURE THE UTERINE
ARTERY USING COLOR DOPPLER TO
IDENTIFY THEM, AND WE AVERAGED
THE RIGHT AND LEFT URINE ARTERY
FOR THE MEASUREMENT FOR THE
PREGNANCY, AND WE NOTED THE
PRESENCE OR ABSENCE OF A NOTCH
ALSO.
SO SHEAR WAVE ELASTOGRAPHY,
STANDARDIZED AND HAS GOOD
VARIABILITY.
WE MEASURED IT FROM THE CIRCULAR
SHAPED REGION OF INTEREST AS YOU
SEE ON THE SLIDE.
WE OBTAINED THAT BETWEEN
MATERNAL RESPIRATORY EFFORTS AND
THE ABSENCE OF FETAL MOVEMENTS
AND WITHOUT ANY COMPRESSION FROM
THE TRANSDUCER.
THE PRESENCE OR ABSENCE OF
CALCIUM IN THE PLACENTA WAS ALSO
DETERMINED, AND THAT WAS NOTED,
THE PRESENCE OR ABSENCE AND ALSO
THE QUANTITY OF THAT.
NOW LET ME SHARE WITH YOU SOME
OF THE RESULTS IN THE REMAINING
TIME.
OF THE 610 PREGNANCIES, 511 OR
84% DELIVERED AT OR AFTER 34
WEEKS AND CONSTITUTED OUR
CONTROL POPULATION, AND
99 PREGNANCIES DELIVERED AT LESS
THAN 37 WEEKS AND THERE ARE THE
CASES.
WHEN WE LOOKED AT THE SPIRAL
ARTERY PULSATILITY INDEX, THESE
ARE THE NORMAL PREGNANCIES, THE
CONTROLS THAT ARE DESIGNATED IN
THE GREY CIRCLES, AND YOU CAN
SEE THAT STARTING EARLY IN
GESTATION, THE PULSATILITY INDEX
DECREASES INDICATING THAT
PLACENTAL ADAPTATION IS ONGOING
INTO THE SECOND TRIMESTER.
AND THE DECREASE IN P.I. IMPLIES
IMPEDANCE OF THE PLACENTA IS
DECREASING ALSO, CONFIRMING THE
ADAPTATION OF THESE VESSELS FROM
EARLY PREGNANCY ONWARD.
AND WHEN YOU LOOK AT THE CHANGES
HERE IN THE PLACENTA, APOLOGIZE
FOR THIS SLIDE, IT'S NOT SHOWING
THE SCHEMATIC DRAWING, BUT YOU
CAN SEE THE CHANGE IN THE P.I.,
IN THE WAVEFORM ITSELF FROM THE
FIRST TRIMESTER ON THE LEFT SIDE
OF YOUR SCREEN INTO THE THIRD
TRIMESTER ON THE RIGHT SIDE OF
YOUR SCREEN.
THEN THE SLIDES I'LL BE SHOWING
YOU MOVING FORWARD, THE CONTROLS
ARE IN GREY AND THE CASES ARE IN
RED.
YOU SEE FOR THE NUMBER OF SPIRAL
ARTERIES, THROUGHOUT GESTATION,
WE SAW MORE IN THE CONTROLS
NUMERICALLY AND REACHED
STATISTICAL SIGNIFICANCE IN THE
SECOND, FOURTH, FIFTH AND SIXTH
ULTRASOUND EXAMINATION AS YOU
SEE HERE.
WHEN WE LOOKED AT THE PEAK
SYSTOLIC VELOCITY BETWEEN CASES
AND CONTROLS, THE PEAK SYSTOLIC
VELOCITY WAS A BIT HIGHER IN THE
CONTROLS IN THE SECOND AND THIRD
ULTRASOUND BUT DID NOT REACH
STATISTICAL SIGNIFICANCE BEYOND
THAT.
WHEN WE LOOKED AT THE
PULSATILITY INDEX OF THE SPIRAL
ARTERIES, THERE WAS NO --
ALTHOUGH THE CASES HAD HIGHER
NUMERICALLY PULSATILITY INDEX
IMPLYING A SLIGHTLY HIGHER
IMPEDANCE IN THE PLACENTA, THIS
DID NOT REACH ANY STATISTICAL
SIGNIFICANCE.
NOW WHEN WE LOOK ON THE FETAL
SIDE OF THE PLACENTA, AGAIN
YOU'LL SEE SIGNIFICANT CHANGES
IN THE SPECTRAL DOPPLER OF THESE
INDICES AS YOU MOVE IN
PREGNANCY.
THAT IS RELATED TO LOWER
IMPEDANCE IN THE PLACENTA ON THE
FETAL SIDE PROBABLY ALSO
ASSOCIATED WITH INCREASING
CARDIAC OUTPUT IN THE FETUS.
AND WHEN YOU LOOK AT THE FETAL
PLACENTAL ARTERY, AGAIN WE SAW
NO SIGNIFICANT DIFFERENCES
BETWEEN THE CASES AND THE
CONTROLS WITH REGARDS TO THE
P.I..
WITH REGARDS TO THE NUMBERS,
AGAIN REALLY NO SIGNIFICANT
DIFFERENCE THROUGHOUT GESTATION.
AND THE PEAK CYST S SYSTOLIC WAT
STATISTICALLY DIFFERENT IN THE
COHORT.
WHETHER WE LOOK AT SHEAR WAVE EE
LASING TOGRAPHY, THERE WAS NO
CHANGE DURING PREGNANCY AND WE
SHOWED NO DIFFERENCE BETWEEN
CASES AND CONTROLS IN OUR
COHORT.
NOW, WHEN WE LOOK AT THE UTERINE
ARTERY, YOU CAN SEE EARLY ON IN
PREGNANCY, CASES HAD HIGHER
URINE ARTERIES THAN CONTROL, BUT
THEN THROUGHOUT PREGNANCY WITH
EXCEPTION OF 24, 25 WEEKS THERE
WAS REALLY NO DIFFERENCE BETWEEN
THE TWO.
AS WE START LOOKING AT RATIOS
TRYING TO IDENTIFY, COULD WE
IDENTIFY A PLACENTAL INDEX, OVER
THE SPIRAL ARTERIES NUMBER WAS
SIGNIFICANTLY DIFFERENT
THROUGHOUT MOST OF GESTATION
BETWEEN CASES AND CONTROLS, AND
WHEN WE LOOKED AT THE UTERINE
ARTERY PI OVER THE NUMBER OF
ARTERIOLES YOU COULD ALSO SEE
SOME SIGNIFICANT DIFFERENCES
BETWEEN CASES AND CONTROLS.
LOOKING AT THAT PRESENCE OF
MICRO CALCIFICATIONS IN THE
PLACENTA, THIS WAS HIGHLY
SIGNIFICANT IN THE FIRST
TRIMESTER ULTRASOUND WITH ABOUT
A THREE FOLD INCREASE IN THE
PRESENCE OF MICROCALCIFICATIONS
IN PREGNANCIES IN THE FIRST
TRIMESTER, AND THAT ALSO WAS
PRESENT AT THE ULTRASOUND AT 16
TO 17 WEEKS AND 28 AND 29 WEEKS.
WHEN WE LOOKED AT THE
MULTIVARIATE ANALYSIS USING
THESE VARIABLES AND THE
REGRESSION MODEL TO DETERMINE
SIGNIFICANCE IN OUR MODEL, WE
SHOW THAT MATERNAL AGE, THE
RATIO OF THE UTERINE ARTERY PI
OVER PLA SEE TALL 15 TALL
ARTERIOLES AND THE PRESENCE OF
MICROCALCIFICATIONS REMAIN
SIGNIFICANT ASSOCIATIONS BETWEEN
CASES AND CONTROLS.
SO HOPEFULLY WHAT I HAVE SHOWN
YOU IN MY PRESENTATION, THAT WE
CONFIRMED OUR ABILITY TO
INVESTIGATE PLACENTAL MICRO
VASCULATURE AND TISSUE
CHARACTERISTICS IN VIVO STARTING
IN EARLY GESTATION.
WE DEMONSTRATED THAT PLACENTAL
ADAPTATION STARTS IN THE FIRST
TRIMESTER AND EXTENDS INTO THE
MID SECOND TRIMESTER.
WE ALSO SHOWED PLACENTAL CHANGES
THAT PREDISPOSES TO ADVERSE
PREGNANCY OUTCOME ARE EVIDENT IN
THE FIRST TRIMESTER, AND WE'RE
HOPING THAT THIS EARLY PREGNANCY
RISK USING THESE ULTRASOUND
TOOLS MAY ALLOW BETTER TARGETING
OF PREVENTIVE STRATEGIES OR
APPROACHES INTO THE FUTURE.
I WOULD LIKE TO TAKE A MOMENT TO
THANK BOTH THE EVMS AND THE UTMB
RESEARCH TEAMS FOR WORKING
REALLY HARD TO STUDY THIS LARGE
PROSPECTIVE COHORT.
I WOULD LIKE ALSO TO THANK
DR. WEINBERG FOR HIS VISION AND
LEADING THE HUMAN PLACENTA
PROJECT, DR. KELLEY FERGUSON
FRFORHER RESEARCH TEAM FULLY
ENIMAIJED LOOKING AT FETAL ORGAN
VOLUMES AND MEASUREMENTS IN
CORRELATION WITH ENVIRONMENTAL
EXPOSURE, AND TODD FROM CANON
AND GW FOR THEIR SUPPORT IN THE
STUDY.
LAST I WOULD LIKE TO ALSO THANK
OUR PREGNANT INDIVIDUALS WHO
HAVE REALLY GIVEN THEIR TIME AND
EFFORT TOWARDS US UNDERSTANDING
CHANGES IN THE PLACENTA STARTING
FROM EARLY GESTATION.
THANK YOU VERY MUCH FOR YOUR
ATTENTION.
>>THANK YOU SO MUCH.
NEXT WE'LL HAVE THE PLEASURE OF
HEARING FROM DR. RACHEL
HARDEMAN.
SHE IS TENURED PROFESSOR AT THE
UNIVERSITY OF MINNESOTA SCHOOL
OF PUBLIC HEALTH.
SHE IS THE BLUE CROSS ENDOWED
PROFESSOR IN HEALTH AND RACIAL
EQUITY AND FOUNDING DIRECTOR OF
THE CENTER FOR ANTI-RACISM
RESEARCH FOR HEALTH EQUITY.
SHE IS A REPRODUCTIVE HEALTH
RESEARCHER FOCUSING ON WAYS
BETWEEN STRUCTURAL RACISM AND
HEALTH.
SHE HAS RECEIVED MULTIPLE AWARDS
FOR HER WORK AND IS ACTIVE WITH
ORGANIZATIONS THAT SEEK TO
ACHIEVE HEALTH EQUITY.
DR. HARDEMAN, THANK YOU FOR
BEING HERE.
WELCOME.
WE LOOK FORWARD TO YOUR TALK.
>>THANK YOU VERY MUCH FOR
HAVING ME.
GOOD MORNING, EVERYONE.
I WANT TO START BY THANKING
DR. BIANCHI FOR THE INVITATION
AND ALSO THANKING NICHD FOR
THEIR SUPPORT OF MY RESEARCH
OVER THE YEARS.
I HAD A SLIDE DECK PREPARED FOR
YOU, IT WAS BEAUTIFUL, BUT THE
FILE BECAME CORRUPTED SO I WON'T
BE SHARING THAT WITH YOU ALL
TODAY SO BEAR WITH ME.
I'M GOING TO GO WITHOUT SLIDES.
AND JUST -- I WANT TO START BY,
YOU KNOW, SHARING THAT -- MY
THOUGHTS TODAY, THE THOUGHTS ARE
BOBOTH ABOUT MY WORK AND RESEARH
AND THE FIGHT FOR REPRODUCTIVE
HEALTH EQUITY BUT ARE ALSO VERY
ASPIRATIONAL AS WE THINK ABOUT
WHAT'S NEXT IN THIS SPACE AND
WHERE WE SHOULD BE HEADED.
IT'S NOT GOING TO BE SOLELY SORT
OF A RESEARCH/DATABASE
PRESENTATION BUT REALLY IT'S
MEANT TO BE THOUGHT PROVOKING AS
WE CONSIDER THE PATH FORWARD
TOWARDS EQUITY.
SO A FUTURE I WANT TO SEE IS ONE
THAT STARTS WITH LOVE.
LOVE IS NOT NECESSARILY A
SCIENTIFIC TERM, ALTHOUGH MAYBE
IT SHOULD BE, BUT I THINK IT'S
CRITICAL TO HOW WE APPROACH THE
SCIENCE AND WHY I PERSONALLY DO
THE SCIENCE.
AND AN ARTICLE I'VE PUBLISHED IN
THE NEW ENGLAND JOURNAL OF
MEDICINE WITH TWO OF MY
INCREDIBLE COLLEAGUES IN THE
MIDST OF A GLOBAL PANDEMIC THAT
WAS DISPROPORTIONATELY AND
CONTINUES TO DISPROPORTIONATELY
IMPACT BLACK AND BROWN EXEUNTS
COMMUNITIES, ONE OF THE THINGS
WE STATED VERY CLEARLY AND
INTENTIONALLY IN THAT ARTICLE
WAS THAT GEORGE FLOYD WAS LOVED.
AND THE FACT THAT WE
CONTINUOUSLY NEED TO REMIND ONE
ANOTHER THAT GEORGE FLOYD WAS
LOVED, THAT BLACK PEOPLE ARE
LOVED, HAS EVERYTHING TO DO WITH
THE RACIAL INEQUITIES THAT I
TACKLE IN MY RESEARCH EVERY
SINGLE DAY.
BECAUSE LOVE IS NOT OUR DEFAULT.
WE'RE CONSTANTLY HAVING TO
DEMONSTRATE AND PROVE THE
HUMANITY OF PEOPLE IN OUR
SOCIETY, IN OUR COMMUNITIES
EVERY SINGLE DAY.
SO THESE ARE WORDS THAT I WROTE
FOR A COMMUNITY EVENT RIGHT HERE
IN THE TWIN CITIES, IN
MINNEAPOLIS, AS OUR COMMUNITY
WAS DEALING AND GRAPPLING WITH
THE PAINFUL TRAUMA OF GEORGE
FLOYD'S MURDER AT THE HAND OF
POLICE.
SO WHAT I WROTE WAS, BLACK
PEOPLE ARE LOVED.
WE REMAIN OUT OF LOVE, WE SHOW
OVER AND OVER AGAIN THAT LOVE IS
THE MOST POWERFUL FORCE ON THE
PLANET.
WE ARE AN EMBODIMENT OF THE
POWER OF LOVE TO PERSEVERE AND
TO FLOURISH, WE'VE USED LOVE TO
HEAL AND FIND STRENGTH WHEN WE
THOUGHT THERE WAS NONE.
IT IS A LOVE FROM AND OF OUR
ANCESTORS THAT WILL CONTINUE TO
NURTURE US IN OUR TIME OF NEED,
AND THIS LOVE OF OURSELVES AND
OUR COMMUNITY WILL HOLD US AS WE
STAND STRONG IN THE FACE OF
TODAY'S CHALLENGES AND
TOMORROW'S TRIUMPHS.
SO A GOAL OF MY RESEARCH IS TO
MANIFEST RACIAL JUSTISE SO THAT
BLACK WOMEN AND GIRLS CAN LIVE
TO THEIR FULL GREATNESS AND
GLORY.
RIGHT NOW BASED ON THE
INEQUITIES WE SEE IN MATERNAL
AND INFANT HEALTH AND
REPRODUCTIVE HEALTH, WE KNOW
THAT'S NOT HAPPENING.
I ARGUE THAT TO GET THERE, WE
HAVE TO BE WILLING TO FIRST AND
FOREMOST LOVE BLACK PEOPLE, WE
HAVE TO BE WILLING AND ABLE TO
PROTECT WOMEN AND GIRLS, AND
PRIORITIZE OUR SAFETY AND
BELIEVE IN OUR HUMANITY.
WE HAVE A LOT OF EXAMPLES RIGHT
NOW, BOTH HISTORICALLY AS WELL
AS RIGHT NOW THIS VERY MOMENT
THAT RUN COUNCIL 1 COUNTER TO AE
VALUES WHICH IS WHY I THINK IT'S
IMPORTANT TO UNDERSTAND WHAT
WE'RE UP AGAINST, IT'S GOING TO
ALLOW US TO ENVISION WHAT'S
POSSIBLE IN A MUCH MORE CLEAR
WAY.
SO I COME TO YOU AS A MOM, AS A
DAUGHTER, AS A SISTER, AND AS A
SCHOLAR WHO WORKS EVERY SINGLE
DAY TO MANIFEST CHANGE FOR BLACK
WOMEN AND GIRLS IN OUR COUNTRY.
AS A RESEARCHER, I USE THE TOOLS
OF SCIENCE AND INQUIRY TO CREATE
THE EVIDENCE BASE TO ENACT AND
INSIGHT CHANGE, AND I'M ALWAYS
THINKING ABOUT THE POWER OF
DATA, THE NUMBERS, ALLOW US THE
STORIES AND HUMANITIES BEHIND
THOSE NUMBERS IN ORDER TO
IMPROVE REPRODUCTIVE HEALTH
OUTCOMES.
SO TODAY I'LL SHARE A LITTLE BIT
OF SOME OF THAT DATA AND SOME OF
THE STORIES AS WE BEGIN TO SORT
OF IMAGINE AND REIMAGINE WHAT'S
POSSIBLE.
AND AS I DO THAT, AGAIN, I ASK
YOU TO HOLD IN YOUR MINDS THAT
IDEA OF LOVE AND EMBODYING WHAT
AND WHO WE LOVE AS WE MOVE THIS
WORK FORWARD.
SO AS I SAID, I THINK THERE'S A
LOT OF THINGS IN OUR SOCIETY
THAT CURRENTLY RUN COUNTER TO
THE HUMANITY OF BIRTHING PEOPLE,
GENERALLY SPEAKING, AND
CERTAINLY PEOPLE FROM RACIALIZED
COMMUNITIES, FROM BLACK AND
BROWN COMMUNITIES IN
PARTICULARLY.
SO STARTING OUR SCIENCE FROM A
PLACE OF LOVE OFFERS A SORT OF
CRITICALLY IMPORTANT FRAMEWORK
FOR US TO THINK ABOUT HOW WE DO
THIS WORK, HOW WE SEE THE NEXT
FIVE TO 10 YEARS UNFOLDING.
AND SO WE KNOW AND WE HEARD IN
THE OPENING REMARKS SOME OF THE
INEQUITIES WE'RE GRAPPLING WITH.
WE KNOW THEY'VE PERSISTED FOR A
VERY, VERY LONG TIME.
FOR INSTANCE, INFANT MORTALITY
RATES, WE'VE SEEN RACIAL
INEQUITIES BETWEEN BLACK AND
WHITE INFANTS AND FOR MORTALITY
FOR AS LONG AS THOSE DATA HAVE
BEEN COLLECTED, WHICH IS A VERY
LONG TIME.
WE HAVE IN THE PAST FEW YEARS
REALLY TURNED OUR ATTENTION TO
THE FACT THAT WE ARE THE ONLY
INDUSTRIALIZED COUNTRY WITH A
RISING MATERNAL MORTALITY RATE
AND WHAT WE'RE SEEING IS THAT
BLACK AND INDIGENOUS BIRTHING
PEOPLE ARE DRIVING THAT RATE
SUCH THAT BLACK BIRTHING PEOPLE
ARE FOUR TIMES MORE LIKELY TO
EXPERIENCE MATERNAL DEATH.
SO I THINK WE'VE DONE AN
INCREDIBLE JOB AS RESEARCHERS OF
DOCUMENTING THE INEQUITIES THAT
ARE PLAGUING OUR SOCIETY THAT
ARE IMPACTING POPULATION HEALTH.
AND WE'VE MOVED INTO THE SPACE
OF STUDYING THE MECHANISMS THAT
CONTRIBUTE TO THESE INEQUITIES,
AND REALLY THINKING ABOUT WHAT
THOSE MECHANISMS ARE AND THEN
WHAT ARE THE LEVERS, WHAT'S THE
SOLUTION, HOW DO WE CHANGE THAT,
HOW DO WE INFLUENCE OUTCOMES.
AND I'M GOING TO TALK A LITTLE
ABOUT SOME OF THE RESEARCH I'M
DOING IN THIS SPACE SORT OF
THINKING ABOUT THE MECHANISMS.
ONE OF THE MECHANISMS THAT MY
TEAM AND I ARE THINKING ABOUT
WHEN WE THINK ABOUT THE ADVERSE
OUTCOMES IN MATERNAL AND INFANT
HEALTH FOR BLACK BIRTHING PEOPLE
AND THEIR INFANTS IS AROUND
POLICING.
WHICH I THINK FOR A LOT OF FOLKS
MAY NOT BE THIS SORT OF OBVIOUS
CONNECTION, RIGHT, TO
REPRODUCTIVE HEALTH OUTCOMES,
BUT I WOULD ARGUE THAT THE
INTERSECTIONS OF POLICE AND
REPRODUCTIVE HEALTH ARE
INEXTRICABLY LINKED.
TO UNDERSTAND THAT, WE HAVE TO
UNDERSTAND THE NOTION OR
FRAMEWORK OF REPRODUCTIVE
JUSTICE, WHICH REFERS TO NOT
JUST THE HUMAN RIGHT TO MAINTAIN
PERSONAL BODILY AUTONOMY AND THE
RIGHT TO HAVE CHILDREN OR NOT
HAVE CHILDREN.
IT ALSO REFERS TO THE RIGHT TO
PARENT THE CHILDREN THAT WE HAVE
IN SAFE COMMUNITIES, COMMUNITIES
THAT ARE FREE FROM VIOLENCE THAT
HAVE ALL OF THE RESOURCES THAT
WE NEED THAT WHEN WE NEED TO
THRIVE.
SO THE CONNECTION BETWEEN THE
PRINCIPLES OF REPRO DUGTIVE
JUSTICE TEARS APART EXISTING
FAMILIES AND COMMUNITIES, STEALS
CHILDREN THAT BLACK PARENTS
ALREADY HAVE, AND ULTIMATELY
CREATES A SOCIAL ENVIRONMENT
WHERE BLACK CHILDREN, BLACK
INFANTS, BLACK MOTHERS ARE
UNABLE TO THRIVE.
I'M GOING TO SHARE A LITTLE BIT
OF THE RESEARCH THAT'S SORT OF
BORNE OUT IN THIS SPACE THAT MY
TEAM HAS LED, AND FIRST -- THE
FIRST THING I'LL SHARE IS A
RESEARCH STUDY WE PUBLISHED LAST
YEAR IN JANA WHERE I AND MY
COLLEAGUES THOUGHT TO EXPLORE
THE LINK BETWEEN POLICING AND
SPECIFICALLY POLICE CONTACT OR
POLICE SURVEILLANCE AND PRETERM
BIRTH.
SO BIRTH BEFORE 37 WEEKS
GESTATION.
SO WE POSED THE QUESTION, IS
LIVING IN A NEIGHBORHOOD WITH
HIGH POLICE PRESENCE ASSOCIATED
WITH AN INCREASED RISK OF
PRETERM BIRTH?
THIS STUDY WAS LOOKING AT -- IN
MINNEAPOLIS AND WE FOUND
STATISTICALLY NEIGHBORHOODS IN
MINNEAPOLIS ARE RACIALLY
SEGREGATED DUE TO RED LINES
RACIAL SEPARATION AND THAT BLACK
NEIGHBORHOODS ARE PREDOMINANTLY
BLACK NEIGHBORHOODS ARE MORE
LIKELY TO BE OVERPOLICED AND
OVERSURVEILED IN COMPARISON TO
PREDOMINANTLY WHITE
NEIGHBORHOODS.
OUR ANALYSIS FURTHER FOUND THAT
OVERPOLICING, SO A
DISPROPORTIONATE AMOUNT OF
POLICE CONTACT AND POLICE
SURVEILLANCE WAS ASSOCIATED WITH
HIGHER ODDS OF PRETERM BIRTH,
PARTICULARLY FOR U.S.-BORN BLACK
BIRTHING PEOPLE IN MINNEAPOLIS.
WE'VE ALSO CONDUCTED SOME
QUALITATIVE ANALYSIS AROUND THE
INTERSECTIONS OF BLACK
MOTHERHOOD AND POLICING THAT
ELUCIDATES THIS -- SORT OF BEARS
OUT IN THESE FINDINGS AS WELL
AND WE'VE LEARNED A LOT ABOUT
THE STRESS THAT BLACK PEOPLE OF
REPRODUCTIVE AGE EXPERIENCE
LIVING IN COMMUNITIES THAT ARE
HEAVILY SURVEIL BID POLICE.
SO MY RESEARCH AND, YOU KNOW,
THIS STUDY ARE -- THE STUDY I
JUST SHARED WITH YOU ARE STEEPED
IN WHAT I WOULD ARGUE AS
HISTORIC KNOWLEDGE OF STRUCTURAL
RACISM AND HOW IT'S MANIFESTED
IN POLICING AND BLACK MOI NORTHS
AND I'LL TALK ABOUT THAT IN JUST
A SECOND BUT I THINK IT'S
IMPORTANT TO SAY WE COULDN'T
HAVE DEVELOPED A WELL INFORMED
STUDY AND ANALYSIS WITHOUT
MAKING THE CONNECTION TO AND
NAMING STRUCTURAL RACISM.
SO WHEN I'M REFERRING TO
STRUCTURAL RACISM, I'M TALKING
ABOUT THE TOTALITY OF WAYS IN
WHICH SOCIETIES FOSTER RACIAL
DISCRIMINATION THROUGH
REINFORCING SYSTEMS OF HOUSING,
EDUCATION, EMPLOYMENT, CREDIT,
MEDIA, HEALTHCARE, POLICING,
CRIMINAL JUSTICE AND MUCH MORE.
AND IN THESE PATTERNS AND
PRACTICES REINFORCE BELIEFS,
VALUES AND DISTRIBUTION OF
RESOURCES AND ULTIMATELY MAKE US
SICK.
AND THAT DEFINITION IS THANKS TO
BAILEY AND COLLEAGUES FROM THEIR
INCREDIBLE PIECE IN THE LANCET A
COUPLE YEARS AGO.
SO I FOCUS ON STRUCTURAL RACISM
IN MY WORK BECAUSE I THINK THAT
IT OFFERS A CONCRETE AND
FEASIBLE APPROACH, IMPROVING
POPULATION HEALTH, WHEREAS WHEN
WE FOCUS ON IMPLICIT BIAS, I
THINK WE GET CAUGHT UP IN
TALKING ABOUT INDIVIDUAL BAD
ACTORS, WE GET CAUGHT UP IN
BEING VERY SORT OF MICROSCOPIC
IN THE WAY WE'RE EXAMINING THESE
ISSUES AND WE FAIL TO UNDERSTAND
THAT WE'RE DEALING WITH SORT OF
A DEEP HISTORY, THAT IT'S GOING
TO TAKE A LOT OF EFFORT AND A
LOT OF DIFFERENT SPACES TO UNDO
IT.
WE ALSO CAN CREATE AN IMPACTFUL
STUDY PROPOSAL, THE ANALYSIS
THAT I JUST SHARED WITH YOU
WITHOUT A KNOWLEDGE OF THE
HISTORY OF POLICING IN THE
UNITED STATES.
I WOULD ARGUE THAT POLICING IS
ONE OF THE OLDEST IF NOT THE
OLDEST FORM OF STRUCTURAL
RACISM.
IT'S DEEPLY EMBEDDED IN A
HISTORY OF CHATTEL SLAVERY AND
THE NOTIONS AROUND POLICING OF
BLACK BODIES.
SO BRIEFLY, DATING BACK TO THE
16 HUNDREDS, THE UNITED STATES
WHICH WAS THEN A BRITISH COLONY,
TOWNS AND CITIES WOULD CONTROL
THEIR COMMUNITIES PO PREVENT
BURGLARIES, ARSON AND OVERALL TO
MAINTAIN ORDER.
THEN AS THE POPULATION INCREASED
IN THE UNITED STATES,
SATURDAYING IN SOUTH C SOUTH CAA
AND EXPANDING TO OTHER SOUTHERN
STATES, LAYING ROOTS FOR THE
NATION'S LAW ENFORCEMENT AS WE
SEE IT AND KNOW IT TODAY.
SO CONTEMPORARY ISSUES
SURROUNDING POLICING AND RACIAL
INJUSTICE HAVE THIS DEEP --
HAVE -- NICHD SINCE EXAMINED
HOW -- REPRODUCTIVE HEALTH.
SO LEVERAGING OUR UNDERSTANDING
OF THIS HISTORY, LEVERAGING OUR
UNDERSTANDING OF WORK AROUND
HYPOTHESIS AND WEAR AND TEAR
BLACK BODIES, THAT CHRONIC
EXPOSURE TO POLICE VIOLENCE AND
ACUTE INSTANCES OF POLICE
VIOLENCE LIKE LIVING IN CLOSE
PROXIMITY TO A HIGH PROFILE
EVENT OF POLICE VIOLENCE MAY
IMPACT THINGS LIKE PRETERM
BIRTH, LOW BIRTH WEIGHT, SMALL
FOR GESTATIONAL AGE BIRTHS, AND
EVEN MATERNAL MORBIDITY AND
MORTALITY IN SOME CASES.
WE'RE IN YEAR TWO OF THAT STUDY
AND I LOOK FORWARD TO BEING ABLE
TO COME BACK AND SHARE SOME OF
THOSE FINDINGS WITH YOU ON A
FUTURE -- AT A FUTURE DATE.
I NOW WOULD SHARE SORT OF THE
CONCEPTUAL MODEL OR THE
CONCEPTUAL FRAMEWORK THAT WE USE
TO INFORM THIS WORK.
BUT SINCE I CAN'T DO THAT, I'LL
TRY TO DESCRIBE IT REALLY
BRIEFLY.
THIS IS A MODEL THAT I DEVELOPED
IN COLLABORATION WITH MY
COLLEAGUE, DR. WALLACE AND
TULANE, WHERE WE THINK ABOUT HOW
STRUCTURAL RACISM IS -- ACROSS
THE LIFE FORCE.
SO EVEN PRE-CONCEPTION, BEFORE
SOMEONE BECOMES PREGNANT,
THEY'RE BEING EXPOSED TO
DIFFERENT VIOLENCE, POLICE
VIOLENCE IN PARTICULAR IN THEIR
COMMUNITIES AND THEIR SOCIAL
ENVIRONMENTS, AND THEN -- AND
AGAIN SO THAT IS BRINGING THEM
INTO PREGNANCY SORT OF ALREADY
UNWELL DUE TO THAT STRESS
PATHWAY, THEN YOU HAVE THESE
ACUTE EXPOSURES LIKE LIVING
THROUGH THE CIVIL UNREST THAT
ENSUED AFTER GEORGE FLOYD'S
MURDER HERE IN MY HOMETOWN, JUST
ABOUT FIVE MINUTES FROM WHERE I
CURRENTLY SIT.
SO I THINK WE HAVE A LOT OF WORK
TO DO TO SORT OF THINK ABOUT
WHAT THAT MEANS FOR -- AND WHAT
IT MEANS FOR THE SOCIAL
ENVIRONMENTS THAT PREGNANT
PEOPLE ARE LIVING IN.
AND I'M REAL IED REALIZING I'M N
TIME SO I'M GOING TO JUMP TO
SOMETHING ELSE REALLY QUICKLY
AND THEN I'LL CLOSE OUT.
THE OTHER THING I THINK IS
IMPORTANT AS WE THINK ABOUT THE
PATH FORWARD, WE HAVE TO THINK
ABOUT THE INEXTRICABLE LINK OF
INFANT MORTALITY AND MORBIDITY
AND REPRODUCTIVE JUSTICE.
AS IT SITS WITH THE THE CURRENT
RESTRICTIONS ON REPRODUCTIVE
BODILY AUTONOMY.
THE FREEDOM TO DECIDE WHETHER
AND WHEN TO HAVE A CHILD HAS
BEEN STRIPPED FROM PEOPLE AND WE
HAVE IMPORTANT WORK AS
RESEARCHERS TO CONTRIBUTE TO THE
EVIDENCE BASE THAT RESTRICT
CHOICE ON BLACK AND BROWN
BODIES.
I'LL BRIEFLY CLOSE WITH JUST
SAYING THAT -- I HAD SO MUCH
MORE TO SAY, I APOLOGIZE.
THIS IS WHY SLIDES KEEP ME MORE
ON TRACK.
BUT RECENTLY A PAPER WAS
PUBLISHED IN THE AMERICAN
JOURNAL OF PUBLIC HEALTH,
STRUCTURAL RACISM THROUGH THE
LENS OF ANTI-ABORTION POLICY,
MEANING THAT I THINK WE HAVE A
LOT OF WORK TO DO TO THINK ABOUT
HOW WE DO RESEARCH THROUGH THIS
LENS AND PARTICULARLY THROUGH
THE MEASUREMENT OF STRUCTURAL
RACISM.
I WAS GOING TO TALK A LOT
ABOUT -- O OR A LITTLE BIT ABOUT
THE MEASUREMENT OF STRUCTURAL
RACISM AS A PATH FORWARD, AS
THAT'S A CORNERSTONE TO THE WORK
THAT I'M LEADING, BUT PERHAPS WE
CAN TACKLE THAT IN THE Q & A
BECAUSE I DO NOT WANT TO TAKE
AWAY FROM MY CO-PANELISTS' TIME.
SO WITH THAT, I'M GOING TO THANK
YOU FOR YOUR TIME AND I LOOK
FORWARD TO YOUR QUESTIONS.
>>DR. HARDEMAN, THANK YOU.
BEFORE WE GET TO OUR NEXT
SPEAKER I'D JUST LIKE TO REMIND
FOLKS THAT YOU CAN EMAIL YOUR
QUESTIONS TO
NICHDPRESS@MAIL.NIH.GOV, SO THAT
WE CAN READ THEM AND HAVE THE
PANEL RESPOND TO THEM AT THE
CONCLUSION OF THE PRESENTATIONS.
AGAIN THAT EMAIL ADDRESS IS
NICHDPRESS@MAIL.NIH.GOV.
NOW I'M PLEASED TO INTRODUCE OUR
NEXT SPEAKER, DR. TORI METZ, WHO
IS A PRACTICING MATERNAL-FETAL
MEDICINE SUBSPECIALIST AT
UNIVERSITY OF UTAH HEALTH.
WHERE SHE IS VICE CHAIR FOR
RESEARCH AND ASSOCIATE PROFESSOR
OF OBSTETRICS AND GYNECOLOGY.
DR. METZ IS A MEMBER OF THE ACOG
COMMITTEE ON OBSTETRIC CLINICAL
PRACTICE GUIDELINES, AND THE
CLINICAL DOCUMENTARY VIEW PANEL.
SHE ALSO SERVES AS THE ASSOCIATE
REVIEW EDITOR FOR OBSTETRICS,
OBSTETRICS AND GYNECOLOGY,
COMMONLY KNOWN AS THE GREEN
JOURNAL.
SHE IS PRINCIPAL INVESTIGATOR IN
NICHD'S MATERNAL-FETAL MEDICINE
UNIT'S CLINICAL TRIAL NETWORK.
THANK YOU SO MUCH, DR. METZ.
THE FLOOR IS YOURS.
>>EXCELLENT.
THANK YOU SO MUCH FOR THE
INTRODUCTION.
IT'S REALLY A PLEASURE TO BE
HERE.
AND TRULY AN HONOR TO HAVE THE
OPPORTUNITY TO PRESENT TODAY
ABOUT THE NICHD MATERNAL-FETAL
MEDICINE UNITS NETWORK.
I HAVE TITLED THIS TALK
PROVIDING EVIDENCE TO IMPROVE
OUTCOMES BECAUSE I THINK THAT'S
REALLY WHAT THE MFMU DOES AND
HOPEFULLY I CAN CONVINCE ALL OF
YOU OF THAT TODAY.
SO FOR THOSE WHO AREN'T
FAMILIAR, THE EUNICE KENNEDY
SHRIVER NICHD MATERNAL-FETAL
MEDICINE UNITS NETWORK WAS
ESTABLISHED IN 1986.
THE PRIMARY OBJECTIVE IS TO
IMPROVE OBSTETRIC CARE,
PREGNANCY HEALTH AND OUTCOMES
FOR PREGNANT PEOPLE AND THEIR
BABIES.
AND WE REALLY DO THIS THROUGH
THE CONDUCT OF WELL DESIGNED
MULTICENTER TRIALS AND PERINATAL
MEDICINE.
THIS DEMONSTRATES THE CURRENT
CENTERS.
THE BLUE STARS ARE STARS OF ALL
THE EXISTING CENTERS, AND YOU
CAN SEE THE LIST OF PIs OVER
THERE ON THE RIGHT.
AND THE GREEN STAR IS THE DATA
COORDINATING CENTER CURRENTLY AT
GEORGE WASHINGTON UNIVERSITY.
SO I'M GOING TO TALK A LITTLE
BIT ABOUT WHERE WE'VE BEEN AND
WHERE WE'RE GOING.
SO I'M GOING TO START WITH WHERE
WE HAVE BEEN.
AND THESE ARE MFMU STUDIES OVER
THE PAST 20 YEARS.
I RECOGNIZE MANY OF YOU WILL NOT
KNOW ALL OF THESE ACRONYMS OF
THESE STUDIES, BUT WHAT I REALLY
WANT TO EMPHASIZE HERE IS THAT
THE MFMU NETWORK HAS COMPLETED
STUDIES THAT HAVE BROUGHT
INTERVENTIONS TO LI CLINICAL
PRACTICE AND DEMONSTRATED THAT
TREATMENTS ARE NOT EFFECTIVE AND
STOPPED THEM FROM BEING USED IN
CLINICAL PRACTICE.
I'M NOT GOING TO GO THROUGH ALL
OF THESE BECAUSE OF TIME, BUT
JUST FOR A COUPLE OF EXAMPLES.
WAY BACK AT THE BEGINNING THERE,
20 YEARS A YOU SEE THE HUAM
STUDY.
THIS WAS HOME UTERINE ACTIVITY
MONITORING.
FOR THOSE OBSTETRICIANS OUT
THERE, WE OBVIOUSLY DON'T DO
THAT ANYMORE.
THAT'S SOMETHING THAT WAS
STOPPED.
FOX, UNFORTUNATELY THAT DIDN'T
PAN OUT FOR BEING ABLE TO
PREDICT BABIES THAT WERE
ACIDOTIC.
SCAN ON THE MIDDLE BOTTOM THERE
WAS A STUDY LOOKING AT
INJECTABLE PROGESTERONE TO
PREVENT PRETERM BIRTH IN PEOPLE
WITH A SHORT CERVIX.
THAT DIDN'T WORK, WE'RE NOT
DOING IT.
THE LIST GOES ON FROM THERE IN
TERMS OF THINGS THE MFMU HAS
DEMONSTRATED ARE NOT EFFECTIVE
AND HAVE NOT ENTERED CLINICAL
PRACTICE.
IN CONTRAST, THERE HAVE BEEN A
NUMBER OF STUDIES THAT HAVE
BROUGHT TREATMENTS TO PRACTICE.
BEAM, YOU CAN SEE THERE, THIS IS
THE MFMU TRIAL THAT DEMONSTRATED
THE EFFICACY OF MAGNESIUM
SULPHATE T.
ALSO ARRIVE AND ALPS ARE MORE
RECENT AND I THINK REALLY HAVE
INFLUENCED CLINICAL PRACTICE.
SO MY CLICKER IS RECONNECTING.
OKAY.
SO THESE ARE A NUMBER OF MFMU
STUDIES BY YEAR STARTED.
WHAT YOU CAN SEE IS BACK IN
1987, WE STARTED OUR FIRST
CLINICAL TRIAL, AND THESE ARE
CLINICAL TRIALS IN ORANGE AND
OBSERVATIONAL STUDIES IN BROWN
AND YOU CAN SEE OVER TIME WE'RE
VERY ACTIVE IN CLINICAL TRIALS
AND OBSERVATIONAL STUDIES
THROUGHOUT THE TIME THE NETWORK
HAS EXISTED.
SO WHERE HAVE WE BEEN?
HOPEFULLY I'VE CONVINCED YOU EVE
DONE LARGE MULTICENTER
RANDOMIZED TRIALS AND RIGOROUS
OBSERVATIONAL STUDIES.
WE'VE LEVERAGED ESTABLISHED
RESEARCH INFRASTRUCTURE AND
EXISTING COLLABORATIONS AND
HOPEFULLY HAVE EXAMINED
MEANINGFUL END POINT FOR
CLINICAL CARE, AND I THINK HAVE
PROVIDED TRUSTWORTHY RESULTS TO
THE SCIENTIFIC AND CLINICAL
COMMUNITY THAT WE CAN THEN
INTEGRATE CLINICAL PRACTICE.
I'M GOING TO TAKE A FEW MOMENTS
TO HIGHLIGHT A COUPLE OF RECENT
MFMU STUDIES BECAUSE I THINK
THEY REALLY EXEMPLIFY WHAT THE
NETWORK CAN DO FOR CLINICAL
OBSTETRICS.
THE FIRST IS THE ANTENATAL LATE
PRETERM STUDIES TRIAL PUBLISHED
IN THE NEW ENGLAND JOURNAL OF
MEDICINE.
THIS IS AN EXAMPLE OF HOW THE
MFMU IS CHANGING OBSTETRIC
PRACTICE.
THIS WAS AN RCT OF PLACEBO OR
STEROIDS IN LATE PRETERM
NEONATES, 34 WEEKS ZERO DAYS TO
36 WEEKS FIVE DAYS.
THE PRIMARY OUTCOME WAS A
NEONATAL COMPOSITE RESPIRATORY
OUT COME OR PERINATAL DEATH
WITHIN 72 HOURS OF DELIVERY.
WHAT WE FOUND IS THAT 11.6% OF
THOSE WHO WERE EXPOSED TO THE
BETAMETHASONE AND 14.4% OF PLA
PLACEBO GROUP HAD PRIMARY
OUTCOME, DEMONSTRATING GIVING
STEROIDS IN THE LATE PRETERM
REDUCED RISK OF THIS OUT COME.
SINCE ALPS WAS PUBLISHED, IT'S
HAD 403 CITATIONS.
IT'S BEEN INCORPORATED INTO
OFFICIAL GHIE DANCE FROM THE
AMERICAN COLLEGE OF OB-GYNEDs
AND THE SOCIETY FOR MATERNAL
FETAL MEDICINE AND NOW WE GIVE
CONSIDERATION TO BIOMETHASONE.
WE JUST RECENTLY COMPLEATED
ENROLLMENT AND HOPEFULLY RESULTS
WILL BE FORTHCOMING AS I KNOW
MANY PEOPLE ARE INTERESTED IN --
WE SEE SHORT TERM BENEFIT BUT
WHAT ARE THE LONG TERM
RAMIFICATIONS? ANOTHER STUDY
THAT I JUST WANTED TO HIGHLIGHT
BRIEFLY BECAUSE IT'S RECENT OVER
THE PAST DECADE, IS THE MFMU
ARRIVE TRIAL.
THIS STUDY WAS PUBLISHED ALSO IN
THE NEW ENGLAND JOURNAL OF
MEDICINE, AND AGAIN THIS IS
ANOTHER EXAMPLE OF THE MFMU
CHANGING OBSTETRIC PRACTICE.
THIS WAS AN RCT OF ELECTIVE
INDUCTION OF LABOR AT 39 WEEKS
GESTATION VERSUS EXPECTANT
MANAGEMENT AMONG NULLIPAROUS
RISK PATIENTS.
THIS REALLY CHALLENGED O OBSTETC
DOGMA, ARE WE'VE BEEN TELLING
PEOPLE YOU SHOULDN'T BE INDUCED
IT INCREASES RISK OF CESAREAN
DELIVERY, AND IS THAT TRUE AND
CAN WE BENEFIT NEONATES WITH
EARLIER INDUCTION?
THE PRIMARY OUTCOME OF THE
ARRIVE TRIAL WAS PERINATAL DEATH
OR SEVERE NEONATAL
COMPLICATIONS.
THIS WAS FOUND IN 4.3% OF THE
INDUCTION GROUP AND 5.4% OF THE
EXPECTANT MANAGEMENT GROUP,
DEMONSTRATING THERE WAS NO
DIFFERENCE IN NEONATAL OUTCOME.
WE ALSO LOOKED AT THE MAIN
SECONDARY OUTCOME IN CESAREAN
DELIVERY, PRESENT IN 18.6% OF
THE INDUCTION GROUP AND 22.2% OF
THE EXPECTANT MANAGEMENT
DEMONSTRATING CESAREAN DELIVERY
WAS ACTUALLY REDUCED WHEN THEY
UNDERWENT INDUCTION AT -- WEEKS.
THIS WAS A VERY IMPORTANT
FINDING.
SINCE THE ARRIVE TRIAL WAS
PUBLISHED IT'S HAD
484 CITATIONS, AND HAS ALSO BEEN
INCORPORATED INTO OFFICIAL
GUIDANCE FROM ACOG AND SMFM.
REALLY WHAT WE'VE SEEN IS
IMPLEMENTATION OF ELECTIVE
INDUCTION OF LABOR AT 39 WEEKS
ACROSS THE UNITED STATES, AND
GLOBALLY.
AND REALLY THIS RESULTS IN
EXPANSION OF OPTIONS FOR
PREGNANT INDIVIDUALS REGARDING
THEIR DELIVERY TIMING
PREFERENCES.
THIS ALLOWS PEOPLE TO SAY, YOU
KNOW, YES, I DO WANT TO BE
INDUCED AND FOR US NOT TO SAY,
WELL, THAT'S GOING TO INCREASE
YOUR RATE OF C-SECTION.
IN FACT, IT'S PROBABLY QUITE THE
OPPOSITE.
DR. BIANCHI, WHEN SHE ASKED ME
TO SPEAK TODAY, ASKED ME ALSO TO
PLEASE ADDRESS THE MFMU GRAVID
STUDY.
THIS IS THE GESTATIONAL RESEARCH
ASSESSMENTS OF COVID-19 IN
PREGNANCY.
AND THIS IS AN EXAMPLE OF THE
MFMU BEING ABLE TO RESPOND
RAPIDLY TO THE SCIENTIFIC
COMMUNITY'S NEEDS.
SO IN IN CASE WE'RE RESPONDING
TO THE COVID-19 PANDEMIC.
GRAVID OVERALL INCLUDED 35
HOSPITAL SITES AMONG THE 12 MFMU
CENTERS.
IN TOTAL, OUR PERINATAL RESEARCH
TEAM ABSTRACTED OVER 25,000
MEDICAL RECORDS, IN ORDER TO GET
THE DATA FOR THE STUDY.
WE LOOKED AT BOTH DELIVERIES IN
2020 AND 2019.
IN 2020, THE DELIVERIES WERE
CASES OF CONFIRMED COVID OR
POSITIVE SARS-COV-2 TESTING IN
OVER 4,000 INDIVIDUALS, AND
THEY'RE COMPARED TO RANDOM
DELIVERY, 11,752 OF THEM.
WE ALSO ABSTRACTED DATA FOR 2019
RANDOM DELIVERIES, AND THAT WAS
ANOTHER 9,709 INDIVIDUALS, AND
THAT WAS ULTIMATELY TO BE ABLE
TO COMPARE PEOPLE WHO DELIVERED
IN THE PANDEMIC TO THOSE WHO
DELIVERED PRIOR TO THE PANDEMIC.
THE FIRST AIM OF GRAVID WAS TO
LOOK AT THE ASSOCIATION BETWEEN
SARS-COV-2 INFECTION AND SERIOUS
MATERNAL MORBIDITY AND MORTALITY
FROM OBSTETRIC COMPLICATIONS.
THIS PAPER WAS PUBLISHED IN
JAMA.
THAT PAPER WAS A RETROSPECTIVE
COHORT STUDY OF 17 HOSPITALS
PARTICIPATING IN THE NICHD
MATERNAL-FETAL NETWORK AND THIS
IS ONLY 17 OF THE TOTAL SITES
BECAUSE WE WERE ONLY COMPARING
THOSE WHO ALSO PARTICIPATED IN
THE RANDOM DELIVERY PORTION OF
THIS PROTOCOL.
SO WE WANTED TO COMPARE PEOPLE
WHO DELIVERED AT HOSPITALS -- AT
THE SAME HOSPITALLING RATHER
THAN INCHOSPITALS RATHER THANIN.
THIS INCLUDED 14,100 FOR
PATIENTS WHO DELIVERED FROM
DECEMBER TO MARCH OF 2020.
2,352 OF THEM HAD SARS-COV-2
INFECTION.
OUR PRIMARY OUTCOME WAS MATERNAL
DEATH OR SERIOUS MORBIDITY FROM
COMMON PREGNANCY COMPLICATIONS
INCLUDING HYPERTENSIVE DISORDERS
OF PREGNANCY, POSTPARTUM
HEMORRHAGE, AND INFECTIONS OVER
SARS-COV-2, AND I THINK
IMPORTANTLY, THESE AREN'T JUST
HAVING A HYPERTENSIVE DISORDER
OF PREGNANCY.
IT MEANS HAVING REALLY
SIGNIFICANT MORBIDITY FROM A
HYPERTENSIVE DISORDER OF
PREGNANCY, SO PROGRESSION TO
ECLAMPSIA, NEEDING I.V.
HYPERTENSIVES.
OUR HYPOTHESIS IS THESE STATES
WOULD PROGRESS FURTHER BECAUSE
THEY WOULDN'T GET TO THE
HOSPITAL OR THERE WERE DELAYS IN
THEIR CARE.
WHAT WE FOUND IS THAT PEOPLE WHO
HAD SARS-COV-2 DID HAVE A HIGHER
RISK OF COMPOSITE DEATH OR
SERIOUS MORBIDITY.
WITH AN ADJUSTED RELATIVE RISK
OF 1.41 OR 40% HIGHER RISK AMONG
THOSE WITH SARS-COV-2 INFECTION.
WHAT WE ALSO FOUND WAS THAT THIS
WAS REALLY DRIVEN BY THE
HYPERTENSIVE DISORDERS OF
PREGNANCY AND INFECTIONS OTHER
THAN SARS-COV-2, NOT REALLY THE
POSTPARTUM HEMORRHAGE COMPONENT
OF THE EXOS SIT.
COMPOSITE.
BUT I THINK PERHAPS MOST
IMPORTANTLY IS THAT WE STRATIFY
BY SEVERITY OF INFECTION.
AND THIS WAS PLANNED AND IT WAS
SOMETHING THAT WE WERE ABLE TO
DO BECAUSE WE WERE ACTUALLY
ABSTRACTING THESE MEDICAL
RECORDS BY HAND AND GOING IN AND
REALLY UNDERSTANDING THE DETAILS
OF THESE SARS-COV-2 INFECTIONS
AND COVID-19 PROCESSES.
AND WHEN WE DID THAT, WHAT WE
FOUND IS THAT ADVERSE OUTCOMES
WERE REALLY AMONG THOSE WITH
MODERATE OR HIGHER DISEASE
SEVERITY, EXCEPT HYPERTENSIVE
DISORDERS OF PREGNANCY, WHICH WE
ALSO SAW WAS INCREASED EVEN WITH
THOSE WHO HAD MORE MILD DISEASE.
BUT WHAT WE COULD SAY FROM THIS
IS THAT WE NEED TO PREVENT
PROGRESSION OF HIGHER DISEASE
SEVERITY THROUGH VACCINATION,
AND TREATMENTS FOR COVID-19.
AND THIS HAS BEEN SOMETHING
THAT'S BEEN REALLY IMPORTANT TO
PREGNANT INDIVIDUALS.
IN HTHIS HAS BEEN A PRESSING ISE
THROUGHOUT THE PANDEMIC, IS THAT
PREGNANT INDIVIDUALS HAVE NOT
BEEN IN TRIALS AND HAVEN'T
RECEIVED THE TREATMENTS
INDICATED FOR THEM SO BEING ABLE
TO SAY THAT WE CAN PREVENT THIS
PROGRESSION TO HIGHER DISEASE
SEVERITY, WITH HE CAN PREVENT
THESE OTHER COMP COMPLICATIONS R
MOMS AND NEONATES WAS REALLY
CRITICAL AND ALLOWED US TO MOVE
FORWARD ON THAT MESSAGING DURING
THE PANDEMIC TO PREGNANT PEOPLE
AND HEALTHCARE PRACTITIONERS.
THIS CLICKER IS RECONNECTING
AGAIN.
SORRY.
IT'S A SEPARATE SYSTEM.
OKAY.
SO WHERE ARE WE GOING?
I THINK THAT I'VE COVERED SOME
OF WHERE WE'RE GOING.
WE NEED TO PUBLISH SOME OF OUR
OTHER RECENTLY COMPLETED
STUDIES, THOUGH.
WE HAVE TRANEXAMIW ACID FOR
PREVENTION OF OBSTETRICAL
HEMORRHAGE, PUBLICATION PENDING.
WE HAVE AN OBSERVATIONAL STUDY
OF HEPATITIS C VIRUS IN
PREGNANCY, AND A PRESCRIPTION
AFTER CESAREAN TRIAL OR PACT
STUDY WHICH LOOKED AT SHARED KE
SITION MAKING AT THE TIME OF
HOSPITAL DISCHARGE.
THE ANTENATAL LATE PRETERM
STEROIDS I MENTIONED AND THE
CYTOMEGLOVIRUS TRIAL FOLLOW-UP.
NOW THAT WASN'T FOUND TO BE
EFFECTIVE BUT WE'RE STILL
INTERESTED IN WHAT HAPPENED LONG
TERM TO THOSE KIDS WHO RECEIVED
EXPOSURE DURING PREGNANCY.
WE ALSO NEED TO COMPLETE OUR
ONGOING TRIALS.
SO IN THE EXISTING NETWORK,
WE'RE STILL ENROLLING IN THREE
TRIALS.
ONE IS THE RANDOMIZED TRIAL OF
PESSARY AND PROGESTERONE FOR
PRETERM PREVENTION IN TWIN
GESTATION WITH A SHORT CERVIX,
SO LOOKING AT THESE
INTERVENTIONS FOR PREVENTING
PRETERM BIRTH.
WE'RE LOOKING AT A RANDOMIZED
TRIAL OF CONTINUOUS POSITIVE
AIRWAY PRESSURE FOR SLEEP APNEA
IN PREGNANCY.
AND WE'RE DOING A POST-ACUTE
SEQUELAE OF SARS-COV-2 STUDY IN
PREGNANT PATIENTS AND THEIR
OFFSPRING.
I'M GOING TO COVER THAT IN SOME
MORE DETAIL.
SO BECAUSE WE WERE ABLE TO DO
THE GRAVID STUDY, WE WERE ALSO
ABLE TO BE FUNDED TO BE PART OF
THE TRANS-NIH RECOVER
INITIATIVE.
THE RECOVER INITIATIVE IS
RESEARCHING COVID TO ENHANCE
RECOVERY.
AND THE MFMU IS PARTICIPATING IN
THIS AS PART OF THE PREGNANCY
COHORT OF RECOVER.
AND FOR THAT STUDY, WE'RE TRYING
TO ENROLL 15 HYUNDAI ADDS 1500W
THEM LONGITUDINALLY, SO LOOKING
AT LONG COVID SIGNS, SYMPTOMS
AND REALLY END OF PHENOTYPING
FOR LONG COVID AMONG THE MOTHERS
WHO HAD SARS-COV-2 IN PREGNANCY.
FOR THE OFFSPRING, WE'RE
FOLLOWING THEM AND EVALUATING A
VARIETY OF NEURODEVELOPMENTAL
MEASURES AND CARDIAC METABOLIC
MEASURES TO SEE IF EXPOSURE TO
SARS-COV-2 IN UTERO RESULTS IN
ADVERSE OUTCOMES IN CHILDHOOD.
THERE'S ALSO COLLABORATIONS THAT
THE MFMU IS BUILDING WITHTH IF
NICHD NETWORK.
WE JUST HAD A STEERING COMMITTEE
MEETING LAST WEEK ACTUALLY, I
WAS IN D.C. FOR THAT, AND THE
IMPRINT INVESTIGATES CAME AND
SPOKE TO US ABOUT HOW WE CAN
COLLABORATE MOVING FORWARD AND
REALLY LEVERAGE ALL OF THESE
RESOURCES TO MOVE THE FIELD.
WE'VE ALREADY BEEN COLLABORATING
WITH THE NIH HELPING TO END
ADDICTION LONG TERM OR HEAL
INITIATIVE.
THAT IS HOW WE DID THE PATCH
STUDY OR THE CESAREAN TRIAL I
JUST DISCUSSED, AND WITH THIS
NEW RFA, THERE'S A FOCUS ON
ALLOWING INVESTIGATORS OUTSIDE
OF MFMU CENTERS TO BRING TRIALS
TO THE MFMU THAT CAN THEN BE
PERFORMED USING OUR
INFRASTRUCTURE.
SO THE IDEA IS REALLY THAT THE
MFMU IS WORKING COOPERATIVELY
WITH NICHD IN ORDER TO PROVIDE A
RESEARCH INFRASTRUCTURE THAT
WILL ALLOW FOR THE MOST
INNOVATIVE AND EXCITING CLINICAL
TRIALS TO MOST HIGHLY IMPACT
OBSTETRIC PRACTICE.
OF COURSE WE NEED TO CONTINUE TO
WORK WITH COMMUNITIES AND
PATIENTS TO MAKE SURE THE
SCIENCE IS ALIGNING WITH WHAT IS
NEEDED BY PREGNANT INDIVIDUALS
IN THE COMMUNITY.
SO WHERE ARE WE GOING?
WE'RE GOING TO CONTINUE TO
FUNCTION WITH A COOPERATIVE
AGREEMENT MOVING FORWARD WITH
NICHD.
WE'RE GOING TO MAINTAIN RESEARCH
INFRASTRUCTURE TO CONDUCT
MULTICENTER, GENERALIZABLE
PERINATAL TRIALS WITH CLINICALLY
IMPORTANT OUTCOMES.
WE'RE GOING TO CONTINUE TO
PROVIDE RIGOROUS EVIDENCE TO
GUIDE OBSTETRIC PRACTICE AND
RESPOND TO THE NEEDS OF THE
HEALTHCARE COMMUNITY.
WE REALLY WANT TO ULTIMATELY
IMPROVE PERINATAL OUTCOMES.
THIS COMES WITH A HUGE, HUGE
THANK YOU TO NICHD FOR FUNDING
THE MFMU NETWORK SINCE 1986.
HOPEFULLY I'VE CONVINCED YOU
THAT'S A WISE INVESTMENT AND
WE'VE BEEN ABLE TO REALLY IMPACT
CLINICAL PRACTICE.
OF COURSE IT'S AN HONOR TO BE
HERE PRESENTING ON BEHALF OF ALL
P.I.s IN THE NETWORK.
THE NURSE COORDINATORS REALLY
HELP THE PROGRAM RUN AND THEIR
RESEARCH TEAMS.
GEORGE WASHINGTON UNIVERSITY
DATA ANAL CIRCLES AND OF COURSE
PATIENTS WHO PARTICIPATE IN
RESEARCH TO IMPROVE OUTCOMES FOR
PREGNANT PEOPLE AND THEIR
CHILDREN.
THANK YOU SO MUCH FOR THE
OPPORTUNITY TO PRESENT TODAY.
IT WAS TRULY AN HONOR.
>>
>>DR. METZ, LET ME THANK YOU IN
RETURN.
OUR FINAL SPEAKER FOR THIS PANEL
IS DR. FASIL TEKOLA-AYELE,
EPIDEMIOLOGY BRANCH, DIVISION OF
POPULATION HEALTH RESEARCH AT
NICHD.
HE LEADS A RESEARCH PROGRAM
FOCUSED ON GENETIC AND
EPIGENETIC AND TRANSCRIPTOMIC
MECHANISMS OF LINKS BETWEEN
FETAL GROWTH AND CARDIOMETABOLIC
DISEASE RISK IN DIVERSE
ANCESTRAL POPULATIONS.
HIS INTERESTS ALSO INCLUDE
OXIDATIVE DNA DAMAGE MARKERS AND
EPIGENETIC AGENT OF THE
PLACENTA, CHILDHOOD OBESITY
RATES.
PLEASE JOIN ME IN WELCOMING
DR. TEKOLA-AYELE.
>>THANK YOU SO MUCH, CAR LINE,
FOR THE KIND INTRODUCTION.
I WOULD LIKE TO SAY THANK YOU TO
DR. BIANCHI FOR INVITING ME TO
BE PART OF THIS EXCITING
SESSION.
SO I'LL GO AHEAD WITH MY
PRESENTATION.
SO MY TALK TODAY WILL FOCUS ON
WHAT WE LEARNED SO FAR ABOUT
FETAL GROWTH, BY LEVERAGING
GENETIC INFORMATION FROM
POPULATIONS WITH DIVERSE
ANCESTRAL BACKGROUND AND ALSO
FROM THE PLACENTA.
WHY DIVERSE ANCESTRAL POPULATION
IN RE?ECH I'D LIKE TO
DEMONSTRATE THAT DIVERSE
ANCESTRY POPULATIONS CAN
GENERATE SCIENTIFIC DISCOVERY,
CAUSE OF MECHANISMS AND ENSURING
THAT INSIGHT -- AND WHY THE
PLACENTA GENOME IN THIS CONTEXT,
THE PLACENTA AS YOU KNOW BRIDGES
THE MATERNAL AND FETAL SYSTEM,
AND ITS FUNCTIONS ARE CRITICAL
FOR FETAL GROWTH AND MAINTENANCE
OF HEALTHY PREGNANCY.
I WILL HIGHLIGHT THAT THE MR. 16
TAPLACENTA HAS VALUABLE GENOMIC
INFORMATION TO ALLOW US TO LEARN
MORE ABOUT GROWTH VARIATION,
BIOMARKERS OF METABOLIC HEALTH
WHICH MAY HAVE EFFECT ON
CHILDREN AND ADOLESCENTS AS
WELL.
NON-EUROPEANS ARE UNDER STUDIED
IN GENOMIC RESEARCH.
DESPITE THE MILLIONS OF STUDY
PARTICIPANTS IN GENOMIC RESEARCH
SO FAR.
FOR EXAMPLE, ONLY 2% OF AFRICAN
AND 1% OF HISPANIC POPULATIONS
WERE INCLUDED IN PREVIOUS
GENOMIC STUDIES.
THE PLACENTA IS ALSO NOT
INCLUDED IN LARGE SCALE
FUNCTIONAL GENOMICS DATABASE.
HERE YOU SEE MORE THAN 50
TISSUES INCLUDED IN THE GTEX,
BUT THE PLACENTA IS STILL
MISSING.
OKAY.
FETAL GROWTH IS CRITICAL FOR
HEALTH ACROSS THE LIFESPAN.
STUDIES HAVE FOUND CONSISTENT
ASSOCIATIONS BETWEEN FETAL
GROWTH AND CONDITIONS THAT
CONTRIBUTE TO DISEASE AND DEATH.
THEREFORE UNDERSTANDING THE
MECHANISMS OF EARLY GROWTH
RECOGNITION CAN HAVE
TRANSLATIONAL VALUES FOR HEALTHY
PREGNANCY AND EVEN BEYOND THAT
FOR SUBSEQUENT HEALTH OF
CHILDREN AND MOTHERS.
AS A POPULATION LABEL FETAL
GROWTH SHOWS VARIATIONS AMONG
GEOGRAPHIC REGIONS AND
INDIVIDUALS AND THIS HAS BEEN
DEMONSTRATED BY TWO STUDIES LED
BY THE -- AND THE NICHD FETAL
GROWTH STUDIES IN THE U.S.
WHEN IT COMES TO GENETICS, THE
CONTRIBUTION OF GENETICS ON
FETAL GROWTH IS SUBSTANTIAL.
IT ALSO VARIES THROUGHOUT
GESTATION.
THIS FIGURE IS FROM ONE OF OUR
STUDIES IN WHICH WE ESTIMATED
THE GENETIC CONTRIBUTION TO
FETAL GROWTH.
ON THE HORIZONTAL AXIS, YOU SEE
GESTATIONAL WEEK, AND ON THE
VERTICAL AXIS IS THE PERCENTAGE
OF VARIATION IN FETAL GROWTH
EXPLAINED BY GENETIC FACTORS.
AS YOU CAN CLEARLY SEE, GENETIC
CONTRIBUTIONS STEADILY RISE,
PEAKING AROUND LATE SECOND
TRIMESTER OF PREGNANCY.
THE IMPLICATION IS THAT GENETIC
STUDIES -- AT BIRTH HAVE AT
LEAST SOME -- FACTORS THAT HAVE
GESTATIONAL -- AND IT SPEAKS TO
THE NEED FOR GENETIC STUDIES --
FETAL GROWTH TRAJECTORY.
NOW THE QUESTION IS HOW DO WE
CONDUCT GENETIC EPIDEMIOLOGY
STUDIES TO IDENTIFY THESE
GENETIC VARIANTS -- GESTATION
AND VARIABLE TO DIVERSE
POPULATIONS.
OBVIOUSLY WE NEED GENOMIC DATA
FROM HUMAN POPULATIONS, BUT THIS
IS COMPLEX.
AT LEAST TWO ANCESTRAL
COMPONENTS.
THIS HAS IMPORTANT IMPLICATIONS.
ONE, BECAUSE HUMAN POPULATION
GENETIC VARIATION IS COMPLEX AND
HETEROGENEOUS RACE/ETHNICITY,
RESIDENCE CANNOT ADEQUATELY
CAPTURE VARIATIONS WE SEE IN
GENETIC ANCESTRY.
SECOND, I MENTIONED EARLIER THAT
A HUGE MAJORITY OF LARGE SCALE
GENOMIC STUDIES SO FAR -- WE --N
YOU USE GENETIC RISK VARIANTS
DISCOVERED IN RESEARCH
PARTICIPANTS WITH EUROPEAN AN
SES PREBACKGROUND ONLY, THIS CAN
LIMIT CLINICAL AND POPULATION
HEALTH BENEFITS OF GENOMIC
RESEARCH.
IN TERMS OF STUDIES, IT HAS
IMPORTANT IMPLICATIONS IN
PREDICTING THE LINK BETWEEN
GENETIC FACTORS AND FETAL GROWTH
ACROSS POPULATIONS.
NEXT I'LL GIVE ONE EXAMPLE FROM
OUR WORK TO ILLUSTRATE THIS LAST
POINT.
HERE OUR GOAL WAS TO ASSESS
WHETHER MATERNAL DIABETES
POLYGENIC RISK IN EUROPEANS
PREDICT FETAL WEIGHT ACROSS
ANCESTRAL GROUPS.
THESE WERE OBTAINED FROM
PREVIOUS GENOME-WIDE ASSOCIATION
STUDIES INVOLVING EUROPEAN
ANCESTRY POPULATIONS
PREDOMINANTLY ONLY.
WHAT WE FOUND AMERICANS IN THE
COHORT FIRST FROM OTHER GROUPS.
IN NEW YORK AND AMERICA, WE
FOUND THERE IS A DIFFERENCE
BETWEEN WOMEN WITH HIGH AND LOW
DIABETES GENETIC RISK.
THIS DIFFERENCE BEGINS AS EARLY
AS 23 WEEKS OF GESTATION, AND
INDEPENDENT OF MATERNAL GLYCEMIC
STATUS.
HOWEVER -- AFRICAN AMERICAN AND
HISPANIC AMERICANS IN THE SAME
COHORT.
GENETIC RISK MARKERS OBTAINED
FROM STUDIES THAT INCLUDE
EUROPEAN ANCESTRY PEOPLE ONLY
INCLUDING THEIR STANDING IN
PREDICTING FETAL GROWTH IN OTHER
ANCESTRAL POPULATIONS.
SO IS IT POSSIBLE THAT SOME
GENETIC VARIANTS THAT UNDERLIE
FETAL GROWTH ALSO -- WITH
ANCESTRY.
AS I MENTIONED EARLIER MOST
POPULATIONS HAVE A MIX OF
ANCESTRAL BACKGROUND SO WE
WANTED TO TEST WHETHER THERE ARE
FETAL GROWTH -- WOMEN BELONGING
TO THE SAME RISK -- COMPOSITION.
WE DID THESE IN THE NICHD FETAL
GROWTH STUDIES COURT.
THE PERSON WITH -- AND HISPANIC
ETHNICITY IN THE COHORT, EACH
VERTICAL LINE REPRESENTS ONE
SAMPLE.
AND THE DIFFERENT COLORS
REPRESENT ANCESTRY DERIVED USING
GENETIC MARKERS.
AFRICAN AMERICANS ARE BLUE AND
GREEN COLORS REPRESENTING
DIFFERENT PERCENTAGE OF AFRICAN
AND EUROPEAN ANCESTRIES.
HISPANICS HAVE THREE COLORS
REPRESENTING THE POPULATION THAT
ARE INDIGENOUS -- WE FOUND THE
TRAJECTORY OF OVERALL GOALS AS
WELL AS GROWTH -- SPECIFIC
GESTATIONAL AGE VARIED ON THE
PERSON AND GENOME.
ALL WOMEN TO THE SAME -- BY RACE
AND ETHNICITY.
AS AN EXAMPLE, THE LONGER THE
LENGTH OF THE FEMUR BONE, THE
LOWER THE WEIGHT OF THE FETUS --
WEIGHT WAS HIGHER AND FEMUR
LENGTH WAS SHORTER.
THESE HIGHLIGHT GENETIC FACTORS
THAT IMPACT GROWTH RELATED WITH
GENETIC ANCESTRY.
RECENTLY A MIX OF POPULATIONS
HAVE GENOME STRUCTURES THAT ALSO
FACILITATE IDENTIFICATION OF
NOVEL GENOMIC RIDGES THAT ARE
ASSOCIATE WITH AN OUTCOME.
WHEN THAT SPECIFIC GENOMIC -- IN
OUR STUDIES THE MIX OF ANCESTRY
COMPOSITION OF -- WE WERE ABLE
TO SUCCESSFULLY MAP SOMETHING
PREVIOUSLY UNKNOWN ANCESTRY OF
LOCI ASSOCIATED WITH FETAL
GROWTH MEASURES.
10 -- AND THREE WERE
AMERINDIGENOUS ANCESTRY.
SOME OF THEM OVERLAP WITH -- IN
TRANSCRIPTION FACTORS INDICATED
IN POSTNATAL DEVELOPMENT IN
MICE.
OVERALL, FINDINGS SUGGEST THAT
GENETIC REGULATION OF --
PATHWAYS THAT ARE RELEVANT FOR
GROWTH AND DEVELOPMENT OF THE
FETUS ARE VERY
ANCESTRY-DEPENDENT MANNER.
ANOTHER IMPORTANT -- IN DRIVING
RESEARCH, BY HELPING US
REFINE -- THE GROUP OF VARIANTS
AS A BLOCK FROM A SINGLE
ANCESTRAL PARENT USUALLY VARY
AMONG POPULATIONS.
SO IF YOU STUDY EUROPEAN GENOME
IT'S DIFFICULT TO DETERMINE
BECAUSE THE LENGTH IS BIGGER.
THE LENGTH OF THESE BLOCKS --
AFRICAN -- CREATING MORE
CROSSOVER ADVANCE OVER
GENERATIONS AND THIS SMALLER
BLOCK OF AFEBLOCK OF AFRICAN GEO
THE STUDY.
SO I GIVE YOU ONE EXAMPLE, FIRST
WE IDENTIFIED MATERNAL GENETIC
VARIANT IN THE ITPR1 ASSOCIATED
WITH LOWER FETAL WEIGHT IN THE
LATE SECOND TRIMESTER/EARLY
THIRD TRIMESTER OF PREGNANCY.
SO THE INTERESTING PART IS, THIS
VARIANT IS ASSOCIATED WITH
WEIGHT ACROSS ALL ANCESTRIES BUT
WE KNOW THAT THE VARIANT IS
PRESENT IN A LONGER GENOMIC
SEGMENT OF LONGER BASE PAIRS BUT
AFRICAN -- 69 BASE PAIRS THAT
HELP US FOCUS ON THE REGION BY
MORE THAN 90% COMPARED TO THE
EUROPEAN GENOME.
THIS IS VERY USEFUL FOR
TRANSLATIONAL STUDIES --
EVIDENCE.
AS I SHOWED IN THE LAST EXAMPLE,
IN GENERAL WE SEE SIMPLE GENETIC
ASSOCIATIONS FROM PATHWAYS.
THIS IS A MAJOR GAP IN
UNDERSTANDING THE FUNCTIONAL
CONSEQUENCE OF MOST GWAS
VARIANCES LINKED WITH BIRTH
WEIGHT.
FOR MOST OF THEM, THEIR
FUNCTIONAL MECHANISMS ARE KNOWN
AND THE TARGET CAUSE OF THE GENE
IS UNCLEAR.
SO WE NEED ADDITIONAL
INFORMATION AND WE HAVE THE
PLACENTA.
THE PLACENTA CONTAINS POWERFUL
INFORMATION IN THE GENOME AND
TRANSCRIPTOME THAT CAN BE
HARNESSED TO PRIORITIZE CAUSAL
GENETIC MECHANISMS AND TO
IDENTIFY GENES UNDERLYING BIRTH
WEIGHT VARIATION.
IDENTIFYING THESE TARGET GENES
IS IMPORTANT FOR STUDIES WHICH
CAN HAVE CLINICAL AND POPULATION
HEALTH BENEFITS IN THE FUTURE.
IN A RECENT COLLABORATIVE EFFORT
WE PUT TOGETHER DIFFERENT OMICS
INFORMATION TO IDENTIFY
POTENTIAL FUNCTIONAL -- FOR
BIRTH WEIGHT.
WE INTEGRATED FETAL GENOME PLUS
EPIGENOME AND TRANSCRIPTOME.
OUR GOAL WAS TO PRIORITIZE GENES
WITH EFFECTS MEDIATED FOR THE
PLACENTAL GENOME AND
TRANSCRIPTOME.
WE FOUND AN OVERWHELMING
PROPORTION OF BIRTH WEIGHTS ALSO
CONTROLLED PLACENTAL METHYLATION
AND GENETIC EXPRESSION IN
REGIONS.
58% OF VARIANTS SHOWS
ASSOCIATION WITH METHYLATION AND
10% GENE EXPRESSION IN THE
PLACENTA.
BIRTH WEIGHT LOCI COMPARED TO
GENOME WIDE, SUGGESTING EFFECT
ON BIRTH WEIGHT ARE LIKELY TO BE
MEDIATED -- ON THE PLACENTAL
GENOME.
AND THE GENES -- BROADLY
ENRICHED IN SIGNALING PATHWAYS
WHICH ARE CONSISTENT WITH THE
VARIOUS FUNCTIONS OF THE
PLACENTA DURING FETAL
DEVELOPMENT.
NEXT WE IMPLEMENTED -- THAT
MODULATE THE EFFECT OF THE
GENETIC VARIANTS ON BIRTH
WEIGHTS WITH THE PLACENTA.
IT'S LIKELY THAT TRANSCRIPTION
IN PLACENTA MAY BE A MECHANISM
OF PROTECT CONSISTENT WITH
CAUSALITY AND THE GENES ARE
IMPLEM KATEED IN EARLY
DEVELOPMENT OF THE PLACENTA AND
EMBRYO.
OVERALL, THIS IS AN IMPORTANT
ADVANCE DEMONSTRATING THE
SIGNIFICANCE OF THE PLACENTA IN
THESE TYPES OF RESEARCH, IN
PARTICULAR IN FILL AGO MAJOR GAP
IN INTERPRETING LOCI IN
TRANSLATIONAL STUDIES.
AGAIN THE PLACENTA IS ON -- BOTH
GROWTH AND PHYSIOLOGICAL --
PROCESSES AND STUDIES HAVE SHOWN
NORMAL AND PREMATURE AGING OF
THE PLACENTA COME TO LOSS OF
TISSUE GENERATING CAPACITY AND
THE PREGNANCY COULD END UP WITH
VARIOUS COMPLICATIONS.
THE EPIGENETIC CLOCK IS A MAJOR
ADVANCE.
THIS CLOCK IS COMPUTED USING
SELECTED METHYLATION SITES AND
EPIGENETIC AGE ACCELERATION --
PLACENTA IS THE GESTATIONAL --
AND STUDIES HAVE SHOWN IN
PLACENTA, EPIGENETIC
ACCELERATION IS ASSOCIATED WITH
FETAL GROWTH IN ONE OF OUR
STUDIES AND WITH EARLY ONSET
PREECLAMPSIA IN A PREVIOUS
STUDY.
SO THERE IS A POTENTIAL THAT
PLACENTA CLOCKS CAN TRACK
ANTECEDENTS OF AGING EARLY IN
THE LIFE COURSE AND METHYLATION
AGE HAS BECOME USEFUL IN
IDENTIFYING MOLECULAR MARKS --
SOME OF WHICH MAY HAVE
IMPLICATIONS FOR -- CHILD IN
LATER LIFE.
OUR STUDIES INCLUDING -- FOUND
OUT MATERNAL CARDIOMETABOLIC --
INCLUDING AND BLOOD PRESSURE
DURING PREGNANCY AND
PSYCHOSOCIAL FACTORS INCLUDING
DEPRESSIVE SYMPTOMS IN THE
PLACENTA.
THESE INCLUDE CHANGES IN THE
PLACENTAL AGE CLOCK, METHYLATION
CHANGES AS WELL AS GENE
EXPRESSION CHANGES AT SPECIFIC
LOCI.
WHAT WE FOUND MUCH OF THE
CHANGES WE IDENTIFIED ARE
LOCATED IN -- AND FETAL
DEVELOPMENT.
INTERESTINGLY, WE ALSO OBSERVE
THE OVERLAP WITH LOCI KNOWN FOR
OTHER CHRONIC DISEASES SUCH AS
DIABETES, FETAL HEART
DEVELOPMENT AND CARDIOVASCULAR
DISEASE, AND -- SUGGESTS THAT
EPIGENETIC MECHANISMS OF THE
PLACENTA MAY UNDERLIE -- BUT
POTENTIALLY MARK LATER ONSET OF
DISEASE.
IT DEFINITELY REQUIRES FURTHER
STUDIES TO BRING THE PLACENTAL
AS A VALUABLE DYING NOS TIS
SOURCE OF INFORMATION, ALSO FOR
PREDICTING LONG TERM HEALTH
OUTCOMES, POSSIBLY OFFERING US
SOME PICTURE OF WHAT CAN BE DONE
ABOUT PREVENTION.
I WOULD LIKE TO END MY TALK WITH
SOME DIRECTIONS MOVING FORWARD.
ONE, THERE IS A NEED TO ADDRESS
THE DIVERSITY GAP IN PERINATAL
GENOMICS, WHICH IS CRITICAL TO
ADDRESS HEALTH AND DISPARITIES
ESPECIALLY WHEN GENOMICS BECOMES
PART OF THE FUTURE.
WITH ADDITIONAL OMICS, CLINICAL
DATA.
AND SECOND, CONTEXT SHOULD BE
CONSIDERED WITH GENETIC VARIANTS
IN THE ENVIRONMENT.
AND THIRD, IT VERY IMPORTANT
TO -- DISCOVER POPULATION --
COLLABORATION BETWEEN
POPULATION-BASED RESEARCH --
WITH BASIC SCIENCE RESEARCH.
AND FINALLY I'D LIKE TO SAY --
OF RESEARCH ON THE PLACENTA,
LONGITUDINAL FOLLOW-UP AND BY
INTEGRATING APPROACH WITH OMICS
SUCH AS AGING -- AND OTHER
PLACENTAL FUNCTION WITH OMICS.
THAT'S THE END OF MY
PRESENTATION BUT I'D LIKE TO
TAKE THIS OPPORTUNITY TO THANK
THE WONDERFUL TRAINEES THAT I'M
WORKING WITH.
I ALSO THANK THE NICHD TEAM AND
COLLABORATORS OF NIH OUTSIDE.
AND WITH THAT, I WOULD THANK YOU
FOR YOUR ATTENTION AND HOPE TO
TAKE QUESTIONS LATER IN THE
SESSION.
THANK YOU.
>>THANK YOU SO MUCH,
DR. TEKOLA-AYELE, AND TO ALL OF
OUR SPEAKERS FOR THIS EXCELLENT
SESSION.
WE CAN OPEN IT UP NOW FOR A Q &
A SESSION.
I WOULD ENCOURAGE ALL OF YOU TO
EMAIL YOUR QUESTIONS FOR ANY OF
OUR PANEL MEMBERS TO
NICHDPRESS@MAIL.NIH.GOV.
WE'LL GET TO AS MANY OF THEM AS
WE CAN DURING THE REMAINDER OF
OUR SESSION.
SO ONE QUESTION STARTING OUT IS
FOR DR. HARDEMAN.
CAN YOU CHARACTERIZE RECEIPT
SEPTION OF YOUR RESEARCH BY THE
RECEPTION, HAS THERE BEEN ANY
PUSHBACK ON YOUR WORK GIVEN THE
CURRENT POLARIZATION WE SEE IN
SOCIETY?
>>THAT'S AN EXCELLENT QUESTION,
AND ONE I OFTEN RECEIVE.
SO I WOULD SAY YES, THERE IS
ALWAYS, ALWAYS GOING TO BE
PUSHBACK IN THIS WORK.
I THINK IT'S THE NATURE OF THE
WORK AND THE SORT OF POLITICAL
AND POLARIZED SOCIETY WE LIVE
IN.
IT'S SORT OF THE REALITY.
THE WAY I THINK ABOUT IT AND THE
WAY I APPROACH THE WORK IS I
OFTEN LEAD WITH THE DATA AND THE
EMPIRICAL EVIDENCE THAT SUPPORTS
SORT OF WHAT THE PATH FORWARD
SHOULD LOOK LIKE.
SO I TRULY BELIEVE THAT AN
EVIDENCE-BASED APPROACH TO
INFORMING POLICY IS INCREDIBLY
IMPORTANT, AND I THINK HAVING
THAT ROBUST SPACE AND BEING ABLE
TO SAY THIS WORK, THIS RESEARCH
HAS BEEN VETTED IN A VARIETY OF
DIFFERENT WAYS AND PEER REVIEWED
CERTAINLY SORT OF HELPS TO MOVE
THE CONVERSATION ALONG.
I THINK WE ALSO HAVE TO BE
INCREDIBLY THOUGHTFUL AND
STRATEGIC ABOUT HOW -- I'M
ALWAYS THINKING ABOUT THE
AUDIENCE I'M PRESENTING WITHIN.
YESTERDAY I HAD THE PLEASURE OF
PRESENTING AT THE SIDM, WHICH
I'M MISREMEMBERING THE ACRONYM
NOW, BUT IT'S FOLKS DOING WORK
IN THE DIAGNOSTIC SPACE AND
THINKING ABOUT THE INTERSECTIONS
OF OUR DIAGNOSTIC ERROR
CONTRIBUTES TO MATERNAL DEATHS
AND MATERNAL MORBIDITY AND THEY
ASKED THE SAME QUESTION, HOW DO
YOU APPROACH THIS WORK I AND THE
PRESENTATIONS OF THIS WORK IN
AUDIENCES THAT ARE SORT OF LESS
RECEPTIVE.
AND WE TALKED A LOT ABOUT HOW TO
USE LANGUAGE AND NARRATIVE AND
STORIES AND DATA TO LIFT UP THE
FINDINGS.
THERE'S ALWAYS GOING TO BE
PUSHBACK, AND I ALSO AM VERY
INTENTIONAL ABOUT SORT OF
FRAMING WHO MY AUDIENCE IS AND
THE FACT THAT I CAN'T BRING
EVERYBODY ALONG BUT THERE'S
FOLKS THAT ARE SORT OF SITTING
IN THE MIDDLE THAT WE CAN BRING
ALONG AND THINKING ABOUT THIS
WORK AND REALLY TAILORING
MESSAGING TO THAT GROUP AS WE
WORK TO BUILD SORT OF A CRITICAL
MASS IN THE SPACE OF
REPRODUCTIVE HEALTH EQUITY.
>>THANK YOU.
THANK YOU SO MUCH.
ONE OTHER QUESTION FOR DR. METZ.
YOU'VE ALLUDED TO THIS.
INCLUDING PREGNANT WOMEN IN
CLINICAL RESEARCH, IS RECEIVING
MORE ATTENTION, BUT HOW FAR ARE
YOU SEEING THIS GO IN YOUR OWN
WORK, AND WHAT MORE DO YOU THINK
NEEDS TO BE DONE TO SORT OF
BREAK DOWN THIS BARRIER TO
EVIDENCE-BASED PRACTICE IN
OBSTETRICS?
>>THANK YOU FOR THAT QUESTION.
IT'S A BIG QUESTION, RIGHT, HOW
CAN WE CONTINUE TO REALLY
PROMOTE THE IDEA THAT PREGNANT
INDIVIDUALS NEED TO BE INCLUDED
IN CLINICAL TRIALS AND THE
IMPORTANCE OF THAT MESSAGE.
I'M HOPING WE CAN REALLY
LEVERAGE WHAT WHAT'S HAPPENED IE
PANDEMIC TO REALLY DRAW MORE
ATTENTION TO THIS IMPORTANT
ISSUE.
I MEAN, WE KNOW THAT BECAUSE
PREGNANT PEOPLE WEREN'T INCLUDED
IN TRIALS EARLY ON IN THE
PANDEMIC, WE REALLY WEREN'T ABLE
TO THEN SAY TO THEM THAT THESE
VACCINES OR THESE TREATMENTS ARE
SAFE AND EFFECTIVE FOR THEM TO
USE DURING PREGNANCY.
THAT, I THINK, REALLY SET US
BACK AND I THINK WE'RE GOING TO
SEE THE RAMIFICATIONS OF THAT
DOWN THE ROAD AS WE START TO
LOOK MORE AT MATERNAL MORBIDITY
AND MATERNAL MORTALITY RELATED
TO THE PANDEMIC, AND SO REALLY
PUSHING THAT MESSAGE THAT WE'RE
NOT PROTECTING ANYONE BY NOT
INCLUDING PREGNANT PEOPLE IN
THESE TRIALS AND THAT IT REALLY
NEEDS TO BE A POPULATION THAT IS
INCLUDED EARLY ON, AND I THINK
WE CERTAINLY HAVE A LARGE
INVESTIGATOR BASE WHO REALLY
BELIEVES IN THAT, AND WE HAVE
SEEN SOME OF THAT START TO
SHIFT.
WE DO HAVE TRIALS THAT OF COURSE
THE NICHD MFMU IS ENROLLING
PREGNANT PEOPLE IN TRIALS,
THAT'S WHAT WE DO.
SO I THINK IT'S AN OPPORTUNITY
FOR THE MFMU, OTHER
INVESTIGATORS WHO DO CLINICAL
TRIALS AND PREGNANT PEOPLE TO
REALLY CONTINUE TO PUSH OUT THIS
MESSAGE ABOUT THE IMPORTANCE OF
THIS.
AND I THINK REALISTICALLY IT'S
GOING TO TAKE SOME TIME TO MOVE
THAT NEEDLE, BUT I THINK PEOPLE
ARE REALLY COMMIT TODAY THAT AND
I THINK IF WE CAN LOOK AT THE
SHINING LIGHT OF THE PANDEMIC,
THERE'S NOT A LOT OF THEM BUT
PERHAPS THIS CAN BE ONE OF THEM
THAT WE CAN REALLY USE WHAT WE
FOUND DURING THIS TIME TO REALLY
PUSH THAT MESSAGE AND THE
IMPORTANCE OF THE MESSAGE THAT
PREGNANT PEOPLE NEED TO BE
ENROLLED IN TRIALS.
>>YEAH, YEAH, SO IMPORTANT.
THANK YOU.
WE HAVE ANOTHER QUESTION FOR DR.
VIEWERS THANK YOU AND ESPECIALLY
FOR YOUR ADAPTATION TO NOT
HAVING SLIDES FOR YOUR
PRESENTATION AT THE LAST MINUTE.
A VIEWER WANTED TO ASK IF YOU
CAN EXPAND ON YOUR BRIEF
COMMENTS ON THE MEASUREMENT OF
STRUCTURAL RACISM.
BEYOND JUST ASKING PARTICIPANTS
FOR THEIR RACE OR GENDER OR
ETHNICITY OR EVEN GEOCODING, HOW
CAN WE DO BETTER TO IDENTIFY
THESE STRUCTURES IN THE RESEARCH
THAT WILL ULTIMATELY HELP
PROMOTE POSITIVE CHANGE?
>>THANK YOU SO MUCH FOR ASKING
THAT QUESTION BECAUSE IT'S
EXACTLY SORT OF THE CRUX OF WHAT
I WANTED TO DIG INTO.
SO I DO WANT TO POINT FOLKS TO A
HEALTH AFFAIRS ARTICLE THAT MY
TEAM PUBLISHED EARLIER THIS
YEAR, THAT SORT OF HELPS WALK
THROUGH HOW WE SHOULD BE
THINKING ABOUT THE MEASUREMENT
OF STRUCTURAL RACISM.
SO I'M NOT PUTTING THAT OUT
THERE FOR SELF-PROMOTION BUT
BECAUSE I THINK THAT IT'S A NICE
SORT OF GUIDE OR FRAMEWORK
APPROACHING THE WORK.
SO WE HIGHLIGHT THE HISTORY OF
RACISM IN THE UNITED STATES THAT
AFFECTS WAYS OUR COUNTRY SHOULD
BE APPROACHING AND THE RESEARCH
COMMUNITY SHOULD BE APPROACHING
MET SURE OF STRUCTURAL RACISM,
SO THAT HISTORICAL PIECE AND
COLLECTING AND CREATING A
REPOSITORY OF HISTORICAL DATA.
SO THINGS LIKE LYNCHING, RIGHTS,
AND OLDER FORMS OF POLICING AND
POLICE VIOLENCE ARE INCREDIBLY
IMPORTANT DATA POINTS AND
VARIABLES.
WE ALSO HIGHLIGHT THE ROLE THAT
GEOGRAPHICAL CONTEXT PLAYS WE
NEED TO BE THINKING REALLY
CREATIVELY ABOUT BOUNDARIES AND
WHAT THAT MEANS.
AND NOT ALL QUESTIONS CAN HAVE
THE SAME SORT OF GEOGRAPHIC
CONTEXT OR GEOGRAPHIC
BOUNDARIES, RIGHT?
SOME OF MY WORK WILL LOOK AT
NEIGHBORHOOD LEVEL, SOME IS
COUNTY, SOME IS CENSUS TRACTS,
SOME IS COMMUTING ZONES AND
OTHER ANALYSIS AROUND THE STATE
AND NATIONAL LEVEL, AND I THINK
THAT'S IMPORTANT BOTH FROM AN
ANALYTICAL STANDPOINT BUT ALSO
AS WE THINK ABOUT THE
IMPLICATIONS FOR FINDINGS AND
WHERE THOSE LEVERS FOR CHANGE
ARE.
WE KNOW THAT DIFFERENT LEVERS
FOR CHANGE AND POLICY ENGAGEMENT
ARE GOING TO LOOK DIFFERENT AT A
NEIGHBORHOOD OR COMMUNITY LEVEL
VERSUS AT A STATE OR FEDERAL
LEVEL.
WE ALSO TALK ABOUT PROMISING
DIRECTIONS FOR INNOVATIVE
METHODOLOGICAL APPROACHES IN THE
MEASUREMENT OF STRUCTURAL RACISM
AND PARTICULARLY THINKING ABOUT
THE FACT THAT STRUCTURAL RACISM
IS THIS -- YOU KNOW, I OFFER
THAT DEFINITION OF SORT OF THE
TOTALITY OF WAYS IN WHICH ALL
THESE DIFFERENT SYSTEMS ARE
INTERACTING TO MANIFEST
INEQUITY.
SO AS A RESULT, WE'RE TALKING
ABOUT SUPER COMPLEX SYSTEMS, AND
SO OUR TEAM IS ACTUALLY LEADING
SOME REALLY, I THINK, EXCITING
WORK TO THINK ABOUT THE
MULTIDIMENSIONALITY ABOUT
STRUCTURAL RACISM, SO WE CREATED
THE MMSR WITH THE GOAL OF -- I
WON'T GET INTO ALL THE TECHNICAL
DETAILS BUT BASICALLY USING
ANALYSIS TO DEVELOP THIS MEASURE
THAT WILL HELP TO INFORM HOW SIX
DOMAINS OF STRUCTURAL RACISM ARE
INTERACTING AND CONTRIBUTING
PARTICULARLY TO PRETERM BIRTH
AND LOW BIRTH WEIGHT SO WE'RE
PILOTING THAT WITH REPRODUCTIVE
HEALTH OUTCOMES RIGHT NOW.
I ALSO THINK WE NEED TO DO A LOT
MORE WORK TO THINK ABOUT HOW TO
MAKE THE CURRENT DATA WE HAVE
MORE ACCESSIBLE TO BOTH
RESEARCHERS AND THE PUBLIC.
WE SHOULD ALL BE ABLE TO ASK THE
QUESTION HOW IS RACISM OPERATING
HERE AND THEN LEVERAGE THE DATA
TO BE ABLE TO DIG INTO THAT
QUESTION AND RIGHT NOW WE'RE NOT
THERE YET.
SO THAT'S ALSO WORK THAT WE'RE
DOING WITHIN THE CENTER FOR
RESEARCH HEALTH EQUITY.
>>THANK YOU SO MUCH.
THE NEXT QUESTION, WHAT DO YOU
SEE AS THE IMPORTANT NEXT STEP
TO EXPLORE THE POTENTIAL FOR USE
OF THESE NOVEL IMAGING
TECHNIQUES IN CLINICAL CARE?
AND IF I MAY TAKE THE LIBERTY TO
ADD TO THAT QUESTION, BECAUSE
I'M WONDERING IF
DR. TEKOLA-AYELE COULD ALSO
CHIME IN ABOUT ANY POSSIBLE
COMBINATION OF TRANS OMIC AND
IMAGING EVALUATIONS OF THE
PLACENTA IN CLINICAL CARE.
SO TO DR. ABUHAMAD FIRST.
>>THANK YOU, CAROLINE.
SO THE PURPOSE OF OUR RESEARCH
WAS FIRST TO TRY TO VALIDATE THE
CONCEPT THAT NOVEL ULTRASOUND
TOOLS COULD BE USED STARTING IN
THE FIRST TRIMESTER, IN EARLY
GESTATION AND WE HAVE DONE THAT.
WE HAVE SHOWN THAT WE CAN STUDY
THE HUMAN PLACENTA QUITE
EXTENSIVELY EARLY IN GESTATION
AND HAD VALIDATED THE KNOWN
CONCEPTS OF PLACENTAL ADAPTATION
THAT EXIST IN PREGNANCY MOVING
FORWARD.
WE HAVE ALSO FOUND SOME ELEMENTS
OF PLACENTAL ABNORMALITIES
PRESENT IN THE FIRST TRIMESTER
THAT CAN PREDICT LONG TERM
COMPLICATIONS.
BY DESIGN WHICH SHOWS A PRIMARY
OUT COME WHICH ENCOMPASSES --
THAT END OF DELIVERING AT LESS
THAN 37 WEEKS AS THE INITIAL
TRIAL, INITIAL STUDY TO PROVE
THE CONCEPT INITIALLY.
WHAT THIS HAS TRANSPIRED SINCE
WE STARTED THIS RESEARCH IN 2015
IS THAT A LOT OF THESE
INNOVATIVE ULTRASOUND TOOLS ARE
NOW AVAILABLE ON A LOT OF HIGH
END ULTRASOUND SYSTEMS.
SO THEY'RE WIDELY AVAILABLE
ACROSS.
I THINK WHAT IS NEEDED NEXT IS
THE VALIDATION OF WHAT WE FOUND
IN DIFFERENT LABORATORIES AND
DIFFERENT PERSPECTIVES AND MAYBE
MULTICENTER TRIAL DESIGN TO SEE
FOR THOSE VARIABLES THAT WE
FOUND THAT EXIST, THERE IS AN
ASSOCIATION, COULD WE VALIDATE
THAT BY USING THIS TECHNOLOGY IN
OTHER CENTERS.
WHAT THE APPLICATION OF THIS
WILL BE, IT REALLY OPENS THE
DOOR TO IDENTIFYING PREGNANCIES
EARLY ON, AND ABOUT RISK
STRATIFYING OF PREGNANCIES IN
EARLY GESTATION WITH REGARDS TO
POSSIBLY SOME INTERVENTIONS,
WHETHER IT'S INCREASED
SURVEILLANCE OR WITH OTHER FORMS
OF INTERVENTION THAT CAN REALLY
HELP TO IMPROVE OUTCOME LATER ON
IN PREGNANCY.
>>THANK YOU.
AND DR. TEKOLA-AYELE, ANY
THOUGHTS ABOUT A FUTURE WHERE
THERE WILL BE SOME SORT OF OMIC
EVALUATIONS IN PREGNANCY
COMBINED WITH IMAGING, PERHAPS,
TOO ENABLE PREDICTION OF ADVERSE
OUTCOMES?
>>YES.
I THINK THAT'S A VERY IMPORTANT
POINT AND QUESTION.
MOVING FORWARD, THE LAST PART OF
MY CONCLUSION WAS MAKING SURE
CLINICAL -- CENTER -- SO WHAT WE
HAVE DONE SO FAR, MOST GROUPS IN
STUDIES IN THE PLACENTA IN TERMS
OF GENOMICS AND OTHER OMICS
ESTABLISHING SOME OF THE
FOUNDATIONAL KNOWLEDGE SHOWING
THAT, YES, WHEN THERE IS A
COMPLICATION, WE SEE MARKER
THERE, OR SOME MARKERS AND --
THAT WE SEE IN THE PLACENTA IN
TERMS OF OMICS WILL HAVE FUTURE
SIGNIFICANCE.
SO I THINK WE NEED A POSSIBLE
WAY OF REACHING MEASUREMENTS
DURING PREGNANCY, BOTH BY
COMBINING EMERGING DATA WITH
SOME OF THE OMICS INFORMATION
THAT WE COULD HARNESS USING THE
MATERNAL CIRCULATING BLOOD
DURING PREGNANCY, SO -- TOGETHER
WITH IMAGING.
I THINK BOTH DATASET ARE BIG
DATA THAT REQUIRE NEW APPROACHES
TO LOOKING UP AND INTEGRATING
DIFFERENT -- MACHINE LEARNING,
MULTI-OMICS WITH IMAGING, SO WE
COULD HAVE INFORMATION THAT'S
USEFUL FOR PREGNANCY ENREACHING
SOME OMICS IN THE IN VITRO.
I THINK THE CHALLENGE IN TERMS
OF GENOMICS IS WE HAVE THE
CIRCULATING -- SOME CIRCULATING
BIOMARKER IN MATERNAL PLASMA OR
SERUM, BUT ALSO WE COULD HARNESS
THE MATERNAL CIRCULATING
BLOOD -- BUT NOW WE NEED WAYS TO
ENRICH THE FETAL -- WE WOULD
HAVE LARGE SCALE MEASUREMENT OF
MARKERS OF THE FETAL GENOME
DURING PREGNANCY.
I THINK ONCE THAT'S ACHIEVED --
THANK YOU.
>>THANK YOU.
WE HAVE JUST A FEW MINUTES LEFT.
THE NEXT QUESTION IS FOR
DR. METZ.
YOU ARE ALSO THANKED FROM THE
AUDIENCE, AS ALL OF YOU ARE, FOR
YOUR PRESENTATION.
TODAY, THE FDA IS DISCUSSING THE
POTENTIAL DISCIPLINE ROLE OF --
FOR PRETERM BIRTH.
WHAT IS THE NETWORK'S POSITION
ON THIS, AND MORE BROADLY, HOW
DOES THE NETWORK NAVIGATE THE
INTERSECTION OF SCIENCE AND
POLICY?
>>THAT IS A LOADED QUESTION.
I SAW THAT NEWS BULLET TODAY AND
WAS WONDERING IF IT WOULD COME
UP.
I MEAN, I THINK THERE'S BEEN A
LOT OF DISCUSSION ABOUT THIS.
I THINK, YOU KNOW, THIS IS THE
REASON THAT WE LOOK AT SORT OF
ALL OF THE EVIDENCE.
I MEAN, I DON'T KNOW THAT THE
NETWORK HAS A POSITION PER SE.
THE NETWORK IS A RESEARCH
INFRASTRUCTURE TO CONDUCT
CLINICAL TRIALS.
THE NETWORK CAN SAY THEY STAND
BY A TRIAL THEY PERFORMED.
I THINK PEOPLE THINK THAT WAS
NOT DONE RIGOROUSLY.
I THINK THE QUESTION THAT'S COME
UP MORE WITH THE PROGESTERONE
DEBATE IS, IS THERE A
SUBPOPULATION THAT PROGESTERONE
BENEFITS, IS IT TRULY THAT
PROGESTERONE SHOULD BE
COMPLETELY REMOVED FROM
PRACTICE, AND I DON'T KNOW
THAT -- I CAN'T SAY THAT THE
NETWORK HAS A POSITION ON THAT.
I MEAN, I THINK THAT THAT'S NOT
WHAT THE FDA IS CONTEMPLATING
NOW, TAKING ALL THE AVAILABLE
EVIDENCE.
BUT I THINK IT SPEAKS TO THE
IMPORTANCE OF TESTING THESE
INTERVENTIONS AT PRACTICE AND
THE CAPACITY TO DO THESE LARGE
TRIALS THAT LOOK AT DIFFERENT
INTERVENTIONS AND DETERMINE
WHETHER THEY ARE EFFICACIOUS FOR
PREGNANT PEOPLE AND IMPROVING
OUTCOMES.
CERTAINLY PROGESTERONE HAS BEEN
IN PRACTICE FOR A LONG TIME AND
I UNDERSTAND THAT'S LARGELY
BECAUSE OF THE MFMU TRIAL THAT
CAME OUT A LONG TIME AGO, BUT I
THINK OBVIOUSLY NOW IT'S
IMPORTANT TO TAKE THE BULK OF
THE EVIDENCE TOGETHER AND MOVE
FORWARD FROM THERE.
BUT I DON'T KNOW THAT THE
NETWORK IS IN THE BUSINESS OF
SORT OF BECOMING INVOLVED IN
POLICY BEYOND OF FACT OF SAYING
WE'VE DONE THIS TRIAL, WE THINK
THIS TRIAL WAS DONE RIGOROUSLY,
AND STAND BEHIND THE WORK THAT
WAS DONE BY THE MFMU, BUT
CERTAINLY, YOU KNOW,
UNDERSTANDING THAT THERE'S A
LARGER BODY OF EVIDENCE OUT
THERE THAT NEEDS TO BE
CONSIDERED.
>>THANK YOU.
VERY WELL SAID INDEED.
THAT BRINGS US, I BELIEVE, TO
THE END OF OUR TIME, UNLESS I
GET A SIGNAL THAT WE CAN KEEP
GOING.
PLUSH OR WE CAN HAVE THE NEXT QN
FOR DR. TEKOLA-AYELE, WHICH IS
THE ABILITY TO ADJUST FOR
GENOTYPE BASED -- DOES IT HELP
THE GENERALIZE THE RESEARCH TO
OTHER STUDIES CONSIDERING THE
SAMPLE STUDY PERTAINED TO ONE
POPULATION AND THIS WOULD
USUALLY BE CONSIDERED A
LIMITATION.
SPECIFIC SPECIFIC -- IN SPECIFIC
GROUPS OR POPULATIONS?
>>YES, I THINK THAT'S A CERTAIN
POINT.
-- ANCESTRY, USUALLY THE
ESTIMATE DEPENDS ON WHICH
SAMPLES WE USE.
BECAUSE VARIOUS -- NOT IN THE
U.S. WHERE WE SAMPLE THE
DIFFERENT GROUPS.
WE GET DIFFERENT POPULATIONS --
IT'S VERY CRITICAL ABOUT THAT,
AND THERE ARE -- GENETIC
ANCESTRY -- HAS ALSO LIMITATION
IN TERMS OF WHAT ANCESTRIES WE
USE AS A REFERENCE.
SO THE ARE MO POPULATIONS WE CAN
SEQUENCE, WE FIND SLOWLY THE
ESTIMATE.
AND ONE THING I WOULD LIKE TO
NOTE IS, SOMETIMES THE GENETIC
ANCESTRY ESTIMATES CAN BE
CORRELATED WITH OTHER
SOCIODEMOGRAPHIC OR CULTURAL OR
DIETARY OR OTHER LIFESTYLE
FACTOR, AND WE SHOULD BE CAREFUL
TO SAY GENETIC ANCESTRY, THE
GLOBAL -- ASSOCIATED WITH AN
OUTCOME, IT COULD JUST BE
BECAUSE OF THE CORRELATION OF
GENETIC ANCESTRY OF
ENVIRONMENTAL FACTORS, NOT
DIRECTLY SHOW GENETIC -- IT'S
VERY IMPORTANT TO PAY ATTENTION
TO THAT.
>>THANK YOU.
AND WITH THAT, I THINK WE WILL
CLOSE.
AGAIN, PLEASE JOIN ME IN
THANKING THIS ESTEEMED PANEL FOR
EXCELLENT TALKS.
THANK YOU FOR YOUR TIME AND
SHARING YOUR EXPERTISE WITH US
AS WE CELEBRATE OUR 60TH
ANNIVERSARY.
>>HELLO, NICHD RESEARCHERS.
KIM SCHRIER HERE.
I'M THE FIRST EVER PEDIATRICIAN
IN CONGRESS.
I REPRESENT WASHINGTON'S 8TH
CONGRESSIONAL DISTRICT, AND I'M
SO EXCITED TO TALK WITH YOU
BECAUSE I THINK THAT YOU AND I
SHARE THE SAME VALUES ABOUT
GIVING OUR CHILDREN THE BEST
POSSIBLE START IN LIFE,
UNDERSTANDING THE IMPORTANCE OF
RESEARCH TO HELP FIGURE OUT HOW
WE GET THEM THEIR BEST OUTCOMES
IN LIFE, AND ALSO DOING THE
CUTTING EDGE RESEARCH INTO
DISEASES THAT PLAGUE OUR
CHILDREN AND THAT WE ARE ALL
DESPERATE TO FIND CURES FOR.
SO I WANT TO THANK YOU FOR YOUR
WORK AND LET YOU KNOW HOW MUCH I
SHARE YOUR VALUES.
YOU KNOW, IT'S INTERESTING,
THERE WAS A LONG TIME WHEN I
THOUGHT, IT'S GOING TO BE REALLY
IMPORTANT TO HAVE A WOMAN DOCTOR
IN CONGRESS AND IT'S GOING TO BE
REALLY IMPORTANT TO I HAVE A
PEDIATRICIAN IN CONGRESS BUT I
DIDN'T REALLY VISCERALLY
UNDERSTAND IT UNTIL I WAS SWORN
IN, AND WITHIN WEEKS, THERE WERE
MEASLES OUTBREAKS ACROSS THE
COUNTRY, AND AS A PEDIATRICIAN
WHO HAS WORKED WITH FAMILIES FOR
20 YEARS, SEEING VACCINE
HESITANCY UP CLOSE AND PERSONAL,
AND THEN BROUGHT FAMILIES ALONG,
YOU KNOW, WITH ANSWERING
QUESTIONS IN A GENTLE VOICE, AND
GETTING HIGH VACCINATION RATES
THAT I KNEW IT WAS IMPORTANT TO
COMBAT ONLINE VACCINE
MISINFORMATION.
SO THE FIRST BILL I INTRODUCED
AND THAT WAS PASSED THROUGH THE
HOUSE AND SENATE AND SIGNED INTO
LAW WAS THE VACCINES ACT.
AND THE IDEA THERE WAS TO LOOK
FOR POCKETS WHERE THERE ISN'T
ENOUGH IMMUNIZATION OF CHILDREN,
FIGURE OUT WHY AND ADDRESS IT,
GET IMMUNIZATION RATES UP AND
MISINFORMATION DOWN, AND BOY,
HAS THAT GOTTEN A WHOLE NEW LIFE
IN THE AGE OF COVID.
ON THAT SAME TOPIC, I'VE BEEN AN
ADVOCATE FOR MAKING SURE KIDS
GET THEIR ROUTINE VACCINATION.
WE'VE SEEN A DROPOFF DURING THE
PANDEMIC, SO I HAVE WORKED TO
EXPAND THE VACCINES FOR CHILDREN
PROGRAM TO MAKE IT EASIER TO
ACCESS VACCINE AND I'VE BEEN A
BIG PROPONENT OF THE HPV VACCINE
WHICH IS FINALLY A VACCINE THAT
CAN PREVENT CANCER.
SO I WANT TO THANK YOU FOR YOUR
RESEARCH AND WANT YOU TO KNOW
HOW I'M CARRYING THAT BATON TO
MAKE SURE KIDS GET GOOD CARE.
I HAVE ALSO WORKED ON GETTING
LEGISLATION TO SUPPORT MORE
PEDIATRICS-SPECIFIC RESEARCH.
THERE ISN'T ENOUGH.
MOST OF THE RESEARCH IS FOCUSED
ON ADULTS.
SO I HAVE PUT FORTH LEGISLATION,
THE PACT ACT OF 2021, THAT WOULD
SPECIFICALLY FUND MORE PEDIATRIC
RESEARCH.
AND THEN I WANTED TO TALK ABOUT
ONE MORE THING BEFORE I
CONCLUDE, WHICH IS JUST THE ROLE
OF NUTRITION AND THE ROLE OF
SOCIAL MEDIA AND SCREEN TIME,
AND HOW THOSE IMPACT OUR
CHILDREN'S HEALTH.
THEIR BRAINS, THEIR DEVELOPMENT,
THEIR ATTENTION, THEIR FOCUS,
THEIR WEIGHT AND THEIR HEALTH.
IT'S THIS IMPACT OF EVERYDAY
LIFE DECISIONS AND LIFE CHOICES
THAT CAN HAVE LONG TERM IMPACT.
SO I'M WORKING ON SHORING UP THE
WIC PROGRAM AND THE SNAP PROGRAM
TO ENCOURAGE MORE FRUITS AND
VEGETABLES BECAUSE IT WILL HAVE
LONG TIME PAYOFF BUT ALSO THE
EFFECT OF SCREEN TIME AND SOCIAL
MEDIA ON CHILDREN'S BRAINS.
I WANT TO THANK YOU FOR THE WORK
YOU DO TO KEEP KIDS HEALTHIER
AND I AM EXCITED TO PARTNER WITH
YOU ON THAT JOURNEY.
THANK YOU AGAIN.
>>OUR NEXT SESSION, RAISING
HEALTHY CHILDREN, IS MODERATED
BY DR. VALERIE MAHOLMES, CHIEF
OF THE PEDIATRIC TRAUMA AND
CRITICAL ILLNESS BRANCH IN THE
NICHD DIVISION OF EXTRAMURAL
RESEARCH.
>>GOOD MORNING.
I'M DR. VALERIE MAHOLMES, AND
I'M DELIGHTED TO SERVE AS YOUR
MODERATOR FOR THIS SESSION
TITLED "RAISING HEALTHY
CHILDREN."
WE HAVE AN EXCITING PANEL
PLANNED FOR TODAY, AND I'M
LOOKING FORWARD TO HEARING THE
EXCITING PRESENTATIONS.
THERE WILL BE AN OPPORTUNITY FOR
QUESTIONS AND ANSWERS AT THE END
OF THE PANEL, SO HOLD YOUR
QUESTIONS.
YOU CAN SUBMIT ANY QUESTION TO
THE NICHD PRESS AT
MAIL.NICHD.GOV.
SO WITHOUT FURTHER ADO, IT IS MY
PLEASURE TO INTRODUCE OUR FIRST
SPEAKER, DR. ROSEM ROSEMARY TRU,
WHO WILL BE JOINING US THROW A
PRERECORDED PRESENTATION.
SHE PREVIOUSLY SERVED ON THE
NICHD ADVISORY COUNCIL IN HER
CAPACITY AS VICE PRESIDENT AT
SESAME WORKSHOP, SHE'S
RESPONSIBLE FOR THE DEVELOPMENT
OF THE INTERDISCIPLINARY
CURRICULUM ON WHICH "SESAME
STREET" IS BASED AND OVERSEES
CONTENT DEVELOPMENT ACROSS
PLATFORMS, INCLUDING TELEVISION,
PUBLISHING, TOYS, HOME VIDEO,
AND THEME PARK ACTIVITIES.
SHE RECEIVED A PH.D. IN
DEVELOPMENTAL AND CHILD
PSYCHOLOGY FROM THE UNIVERSITY
OF KANSAS AND A B.A. IN
PSYCHOLOGY AT RUTGERS
UNIVERSITY.
PLEASE NOW TURN YOUR ATTENTION
TO THE VIDEO.
>>HELLO.
I'M DR. ROSEMARIE TRUGLIO,
SESAME WORKSHOP.
I'D LIKE TO START TODAY BY
CONGRATULATING NICHD ON THEIR
60TH ANNIVERSARY.
IT SUCH A SIGNIFICANT MILESTONE.
AND THANK YOU FOR INVITING ME TO
DELIVER THIS VISION ANY TRAWK TK
TODAY.
SO WHAT IS SESAME WORKSHOP'S
VISION FOR HEALTHY CHILDREN?
LIKE EVERYTHING WE DO, IT STARTS
WITH AN INTEGRATED APPROACH.
WHILE "SESAME STREET" IS BEST
KNOWN FOR THE GROUNDBREAKING
TELEVISION SHOW THAT HAS BEEN
EDUCATING CHILDREN FOR OVER 50
YEARS, OFTEN FOLKS ARE NOT AWARE
OF THE DEPTH AND THE BREADTH OF
SESAME WORKSHOP, A GLOBAL
NON-PROFIT ORGANIZATION WITH A
MISSION TO HELP CHILDREN GROW
SMARTER, STRONGER, AND KINDER.
AND HERE'S HOW WE DEFINE
SMARTER, STRONGER AND KINDER.
TODAY I WANT TO FOCUS ON
STRONGER AND I'D LIKE YOU ALL TO
THINK ABOUT WHAT DOES IT TRULY
MEAN TO RAISE A HEALTHY CHILD
TODAY?
AT SESAME, WE KNOW THAT THE
PHYSICAL HEALTH AND THE MENTAL
HEALTH WELL-BEING ARE EQUALLY
IMPORTANT.
BUT OUR VISION FOR STRONGER
CHILDREN LIES IN HOW THE TWO ARE
INTERCONNECTED.
AND THE CONNECTIVE TISSUE IS IN
CHILDREN'S DEVELOPING SKILLS,
THE COGNITIVE SKILLS TO DEVELOP
SELF CONTROL, FOCUSED ATTENTION,
AND FLEXIBLE THINKING, ALL WHICH
SUPPORT SELF-REGULATION,
PERSEVERANCE AND
SELF-CONFIDENCE.
EXECUTIVE FUNCTION SKILLS ARE
KEY TO DEVELOPING HABITS FOR
PHYSICAL HEALTH LIKE USING
SELF-CONTROL TO CHOOSE HEALTHY
FOODS, OR USE STRATEGIES TO
SUPPORT MENTAL HEALTH WELL-BEING
AND BUILD RESILIENCY SKILLS.
AS WE ALL KNOW, PHYSICAL HEALTH
AND MENTAL HEALTH WELL-BEING DO
NOT EXIST IN ISOLATION IN A
CHILD.
THEY ARE NATURALLY INTEGRATED.
FOR INSTANCE, WHEN A CHILD USES
MOVEMENT OR EXERCISE TO COPE
WITH BIG FEELINGS, IT NOT ONLY
HELPS THEM CALM DOWN, BUT IT
ALSO HELPS THEM KEEP THEIR
PHYSICAL BODY STRONGER.
BUT WHAT WE KNOW AT SESAME IS
THAT TALKING DIRECTLY TO
CHILDREN IS NOT ENOUGH.
SO WE REACH CHILDREN AND
CAREGIVERS TO WHAT WE LIKE TO
CALL THE CHILD'S CIRCLE OF CARE.
AND THAT INCLUDES PARENTS AND
GRANDPARENTS, NEIGHBORS,
EDUCATORS, HEALTHCARE
PROFESSIONALS, LIBRARIANS.
ANY PERSON OR INSTITUTION THAT
HAS A CAREGIVING ROLE TO PLAY.
WE HAVE HUNDREDS OF HOURS OF
FREE CONTENT, VIDEOS, STORY
BOOKS, RESOURCES FOR CAREGIVERS
AND PRACTITIONERS, WHERE
CHILDREN CAN PRACTICE THESE
STRATEGIES AND BUILD THEIR
SELF-REGULATION SKILLS.
SO LET'S TAKE THIS OPPORTUNITY
TO PRACTICE A SELF-REGULATION
STRATEGY WITH ABBY.
>>OH, HI!
IF YOU WANT TO FEEL THIS WAY, I
FEEL KIND OF WORRIED AND YOU BE
SET AND --
>>AND I HAVE MY OWN GLUE JAR
TOO.
AS ADULTS, WE NEED EMOTIONAL
REGULATION STRATEGIES AS WELL TO
HELP US CALM DOWN OUR ADULT-SIZE
BIG FEELINGS.
WE ALL NEED A TOOLBOX OF
STRATEGIES, AS THERE'S NO ONE
STWRAT STRATEGY THAT WILL ALWAYK
TO HELP US MANAGE AND REGULATE
OUR EMOTIONS.
WE ALSO NEED ROLE MODELS WHO
AREN'T PERFECT BUT WHO PERSEVERE
AND KEEP TRYING IN THE FACE OF
CHALLENGES.
SO WHO BETTER TO TALK ABOUT
SELF-REGULATION AND SELF-CONTROL
THAN OUR FRIEND, COOKIE MONSTER.
>>HELLO.
ME COOKIE MONSTER!
HERE TODAY TO TALK TO YOU ABOUT
HOW IMPORTANT IT IS TO EAT
HEALTHY FOODS.
YEAH!
NOW, ME KNOW WHAT YOU THINKING.
THIS GUY G GONNA TALK ABOUT EATG
HEALTHY?
THIS GUY WHO EAT COOKIES LIKE
THEY'RE GOING OUT OF STYLE?
WELL, YOU KNOW ME NOT EXACTLY
HEALTHY-EATING ROLE MODEL, BUT
ME LEARNING.
YEAH.
AND ME FOUND OUT THAT EVEN
THOUGH COOKIES OKAY AS SPECIAL
TREAT SOMETIMES, THERE ARE ALL
KINDS OF HEALTHY FOODS THAT YOU
CAN EAT ANY TIME!
LIKE THESE COLORFUL FRUITS AND
VEGETABLES.
NUM-NUM.
THEY LOOK SO DELICIOUS.
THESE KINDS OF FOODS MAKE YOU
HEALTHY AND STRONG AND BECAUSE
THEY SO GOOD FOR YOU, YOU CAN
HAVE THEM ANY TIME!
AND YOU KNOW WHAT?
THIS SEEMS LIKE GOOD TIME TO ME.
COME TO PAPA!
OH, OH, OH, APPLE, MMM.
>>OUR RESEARCH SHOWS IT'S SO
APPEALING TO YOUNG CHILDREN AND
IT MAKES THE MESSAGES THEY
DELIVER MORE POWERFUL AND
EDUCATIONALLY EFFECTIVE.
AND THAT GOES FOR ADULTS AS
WELL.
WE NEVER TALK DOWN TO CHILDREN
OR ADULTS.
WHICH IS WHY ADULTS LOVE
WATCHING AND LEARNING ALONG WITH
THEIR CHILDREN.
AND THAT IS BY DESIGN.
SESAME WORKSHOP CANNOT DO THIS
ALONE.
WE NEED PROFESSIONALS LIKE YOU
TO USE OUR CONTENT WITH YOUNG
CHILDREN.
AND TO THINK ABOUT THE YOUNGEST
CHILDREN WHEN MAKING POLICY
DECISIONS.
OUR RESOURCES ARE FREE AND
BILINGUAL IN ENGLISH AND IN
SPANISH.
PLEASE USE OUR QR CODE, VISIT
OUR WEBSITE, READ OUR BOOKS AND
SHARE OUR RESOURCES WITH OTHERS.
AND WHETHER YOU'RE A HEALTHCARE
WORKER, RESEARCHER AND EDUCATOR,
A POLICY MAKER, OR A PARENT AND
GRANDPARENT YOU SELF, JUST LIKE
SESAME WORKSHOP'S VISION FOR
HEALTHY CHILDREN IS AN
INTEGRATED APPROACH, WE, TOO,
MUST TAKE AN INTEGRATED APPROACH
TO CARING FOR AND RAISING
HEALTHY CHILDREN.
THANK YOU TO NICHD AND YOUR 60
YEARS OF INCREDIBLE LEADERSHIP
AND PUBLIC SERVICE, AND THANK
YOU FOR ALL YOUR TIME TODAY.
>>THAT WAS WONDERFUL.
WE WERE DELIGHTED TO HAVE THAT
PRESENTATION FROM DR. TRUGLIO.
NOW OUR NEXT PANELIST IS
DR. WENDY CHUNG, WHO IS THE
CLINICAL AND MOLECULAR
GENETICIST AT THE KENNEDY
FAMILY -- AND KENNEDY FAMILY
PROFESSOR OF PEDIATRICS AND
MEDICINE AND DIRECTOR OF
CLINICAL GENETICS AT COLUMBIA
UNIVERSITY.
SHE LEADS THE PRECISION MEDICINE
RESOURCE IN THE URBAN INSTITUTE
AND NATIONAL ORGANIZATION OF
RARE DISEASES CENTER OF
EXCELLENCE AT COLUMBIA
UNIVERSITY.
DR. CHUNG DIRECTS NIH-FUNDED
RESEARCH PROGRAMS IN HUMAN
GENETICS, OF PULMONARY
HYPERTENSION, BREAST CANCER,
OBESITY, DIABETES, AUTISM AND
BIRTH DEFECTS.
DR. CHUNG RECEIVED HER B.A. IN
BIOCHEMISTRY FROM CORNELL
UNIVERSITY, HER M.D. FROM
CORNELL UNIVERSITY MEDICAL
COLLEGE, AND HER PH.D. FROM THE
ROCKEFELLER UNIVERSITY IN
GENETICS.
PLEASE JOIN ME IN WELCOMING
DR. CHUNG TO THE VIRTUAL PODIUM.
DR. CHUNG?
>>THANK YOU, VALERIE.
I DON'T KNOW ABOUT FOLLOWING
CHAO COOKIE MONSTER THERE, BUT L
FOLLOW UP BY TALKING ABOUT
CONGENITAL DIAPHRAGMATIC HERNIA.
I THINK OF THIS AS I DO FOR MANY
CONDITIONS IN CHILDREN, WHICH IS
THAT THEY'RE COMPLICATED, BUT BY
UNDERSTANDING THE COMPLEXITY AND
THE ETIOLOGY OF THE WHY, WHY
CERTAIN THINGS EXIST IN OUR
BODIES, WE CAN COME UP WITH
BETTER TREATMENTS, BETTER
STRATEGIES THAT HELP US TO HAVE
HEALTHIER CHILDREN.
CONGENITAL DIAPHRAGMATIC HERNIA,
AS IS TRUE FOR MANY OTHER
CONDITIONS, WHETHER IT BE
AUTISM, CONGENITAL HEART
DISEASE, OR MANY OTHER THINGS,
ARE OFTEN NOT ISOLATED BUT CAN
BE ASSOCIATED WITH OTHER
MANIFESTATIONS OVER THE LIFE
COURSE, AND UNDERSTANDING WHO
WILL HAVE WHICH MANIFESTATIONS
CAN HELP US TO BE ABLE TO
PREPARE OUR CHILDREN FOR HEALTH.
ONE OF THE QUESTIONS IS WHAT
CAUSES THESE, AND I'M GOING TO
FOCUS ON GENETICS THIS MORNING
BUT TO SAY THAT THESE ARE NOT
THE ONLY CAUSES AND WE ARE STILL
AT THE BEGINNING OF OUR
UNDERSTANDING.
WHEN WE THINK ABOUT THE JE AT GC
CAUSES THEY CAN COME IN LARGE OR
SMALL PACKAGES.
IN SOME CHANGES, LARGE
CHROMOSOMAL CHANGES OR
DIFFERENCES AND IN SOME CASES
SOMETHING THAT AFFECTS ONE GENE
THAT CAN CAUSE THESE MYRIAD
MANIFESTATION.
ONE STUDY WE'VE DONE IS
SOMETHING CALLED DHREAMS.
WE'VE DONE THIS AS A CONSORTIA
AT MANY SITES.
NUMBERS MATTER, THAT IS TO
UNDERSTAND THE COMPLEXITY, IT
REQUIRES OFTENTIMES TENS IF NOT
HUNDREDS OF THOUSANDS OF
INDIVIDUALS WORKING TOGETHER TO
UNDERSTAND WHAT MAKES US
DIFFERENT.
ONE OF THE THINGS WE'VE REALIZED
WITH SOME VERY SIGNIFICANT
CONDITIONS IN CHILDREN IS THAT
THEY'RE GENETIC BUT THEY DON'T
NECESSARILY RUN IN FAMILIES, AND
ONE OF THE REASONS FOR THAT IS
BECAUSE THEY CAN BE DUE TO DE
NOVO OR NEW GENETIC VARIANTS IN
THE CHILD.
FOR THOSE WHO MAY BE PARENTS TO
REALIZE THERE'S NOTHING THAT
YOU'VE DONE TO CAUSE SUCH DE
NOVO GENETIC VARIANTS, AND WE
ALL HAVE THEM, ALL OF OUR
CHILDREN HAVE THEM.
BUT IN SOME CASES DEPENDING ON
WHERE THEY FALL THEY CAN BE
ASSOCIATED WITH VERY SIGNIFICANT
HEALTH RISKS.
I WON'T GO INTO THE COMPLEXITY
BUT IT IS COMPLEX.
THAT IS THAT EACH OF US HAVE
3 BILLION, WITH A B, GENETIC
ALPHABET LETTERS AND DEFINE THAT
ONE NEEDLE IN THE HAYSTACK CAN
BE CHALLENGING.
WITHIN THIS, WE HAVE 20,000
GENES, AND WE'RE STARTING TO
REALIZE THAT SOME GENES DON'T
TOLERATE OR DON'T LIKE TO BE
DITTLED.
THAT IS WHEN MOTHER NATURE
DIDDLES THOSE GENES, THEY CAN
RESULT SOMETIMES IN VERY BIG
CHANGES IN HOW THE BODY
DEVELOPS.
AND JUST TO SIMPLISTICALLY SAY
THAT WE'RE UNDERSTANDING THAT
THOSE PATTERNS BY UNDERSTANDING
THE COMPLEXITY AND THOSE
PATTERNS THAT WE SEE.
IN SOME CASES, ONE GENE CAN BE
DISRUPTED BY SIMPLY DELETING IT,
AND THAT CAN BE SEEN IN A
DIFFERENCE AT THE CHROMOSOME
LEVEL.
IN OTHER CIRCUMSTANCES, THAT
SAME GENE CAN BE CHANGED OR
THERE CAN BE VARIATION WITH ONE
SINGLE BUILDING BLOCK, ONE
SINGLE AMINO ACID.
NOW THE CHALLENGE BECOMES THAT
ALL OF US HAVE THESE TYPES OF
GENETIC VARIATIONS, AND
DIFFERENTIATING WHICH ONES ARE
BENIGN OR NORMAL AND WHICH ONES
ARE DISEASE-CAUSING OR CONDITION
CAUSING CAN BE CHALLENGING.
BUT AGAIN, STUDYING MANY
INDIVIDUALS CAN START TO
UNDERSTAND THIS.
WE ALSO UNDERSTAND THAT THERE
CAN BE CONDUCTORS AND
ORCHESTRAS, THAT IS, GENES THAT
ARE RESPONSIBLE FOR OUR PATTERNS
OF DEVELOPMENT VERY EARLY IN
EMBRYONIC AND FETAL DEVELOPMENT,
AND SUCH CHANGES CAN HAVE A
LIFELONG OF IMPACT ON PARTS OF
THE BODY THAT ARE AFFECTED.
IN SOME CASES, THEY DO REALIZE
THAT THEY CAN RUN IN FAMILIES,
SO BESIDES THESE BEING DE NOVO
OR NEW GENETIC VARIANTS,
SOMETIMES THEY CAN BE PASSED
DOWN FROM GENERATION TO
GENERATION.
BUT IN THOSE GENERATIONS, THERE
MAY BE DIFFERENCES IN TERMS OF
HOW THEY MANIFEST AND HOW
THEY'RE SEEN, AND THAT MAY BE
BECAUSE IT'S NOT JUST THE GENE,
BUT OTHER ENVIRONMENTAL
NUTRITIONAL, OTHER FACTORS AS
WELL.
AS WE'RE LOOKING AT THIS,
SOMETIMES WE CAN SEE THAT THE
DIFFERENCES THAT ARE MANIFEST IN
THE BODY CAN BE QUITE SUBTLE.
I'M SHOWING HERE CONGENITAL
DIAPHRAGMATIC HERNIA THAT'S SEEN
IN A FATHER AND GRANDFATHER THAT
CAN BE VERY TEENY TINY.
VERY SMALL, AS OPPOSED TO A VERY
LARGE DIAPHRAGMATIC DEFECT THAT
WE CAN SEE IN A CHILD THAT HAS
MUCH GREATER IMPLICATION.
AS WE'RE SEEING THIS, WE STARTED
TO REALIZE THAT CHILDREN WHO
HAVE CONGENITAL DIAPHRAGMATIC
HERNIAS AND HAVE THESE GENETIC
VARIANTS IN FACT UNFORTUNATELY
DO WORSE.
THEY HAVE HIGHER RATES OF
MORTALITY, THEY HAVE HIGHER
RATES OF SEVERE COMPLICATION
CALLED PULMONARY HYPERTENSION
AND THEY HAVE MORE SEVERE
PROBLEMS IN TERMS OF
DEVELOPMENT, GROWTH AND BRAIN
DEVELOPMENT OVER TIME.
AS WE'VE DONE THIS, WE'VE
REALIZED THAT ANY ONE GENE IS
RELATIVELY UNCOMMON, BUT
COLLECTIVELY THEY OFTEN ACCOUNT
FOR ABOUT 20% OF THE CASES THAT
WE SEE, AND THAT AS WE SEE
THESE, WE CAN REALIZE THAT EVEN
IN THIS CASE IDENTICAL TWINS
THAT HAVE THE SAME EXACT GENE
AND THE SAME EXACT GENETIC
VARIANT MAY HAVE DIFFERENT
MANIFESTATIONS.
AGAIN, SHOWING US THAT IT'S NOT
ALL IN THE GENES.
THERE ARE OTHER FACTORS AS WELL.
FACTORS WE DON'T ALWAYS
UNDERSTAND.
I'LL SIMPLY SAY THAT IN GOING
FORWARD, WE CAN ALSO BE ABLE TO
VET NOT ONLY IN HUMANS BUT BE
ABLE TO USE ANIMAL MODELS TO
UNDERSTAND THE VERY COMPLEX
BIOLOGY.
WE'VE BEEN ABLE TO DO THIS BY
STUDYING, FOR INSTANCE, MOUSE
MODELS AND EVEN FROG MODELS, FLY
MODELS TO BE ABLE TO MODEL THIS,
AND UNDERSTAND WHAT THINGS ARE
PRIMARY AND AFFECTED BY THE
GENES AND WHAT THINGS MAY BE
SECONDARY TO THE WAY THE BODY IS
DEVELOPING.
IN DOING THIS, SOME OF THIS CAN
BE QUITE ELEGANT AND HAS REALLY
CHANGED OUR IDEAS OF
UNDERSTANDING WHAT IS FIRST AND
WHAT IS SECOND.
FOR CONGENITAL DIAPHRAGMATIC
HERNIA OR HAVING A HOLE IN THE
DIAPHRAGM THAT SEPARATES THE
CHEST FROM THE ABDOMEN, WE
THOUGHT MANY OF THE PROBLEMS
WITH BREATHING OR SECONDARY TO
COMPRESSION OF THE LUMPS AS THEY
WERE DEVELOPING.
COMPRESSION OF THE LUNGS BECAUSE
THE INTESTINES WERE PUSHED UP
INTO THE CHEST AND COMPRESSING
THE DEVELOPING LUNG.
WE NOW, HOWEVER, KNOW THAT MANY
OF THE GENES CAUSING CONGENITAL
DIAPHRAGMATIC HERNIA ARE ALSO
SIMULTANEOUSLY CAUSING PROBLEMS
IN DEVELOPMENT AS A PRIMARY
EFFECT, AND THOSE PRIMARY
EFFECTS ON LUNG DEVELOPMENT, IN
FACT, CANNOT BE FIXED BY SIMPLY
SURGICALLY FIXING THE DIAPHRAGM.
AND THIS NOW HAS IMPLICATIONS
FOR SOMETHING CALLED
FETOESOPHAGEAL OCCLUSION
TREATMENT, WHERE FETAL SURGERY
WE'RE SOMETIMES CHOOSING TO DO
IN THE RIGHT CANDIDATES TO HELP
LUNG DEVELOPMENT.
SO THIS INFORMATION IS HELPING
US TO PREPARE OUR CHILDREN EVEN
PRENATALLY, BEFORE THEY'RE BORN.
WE SEE THE SAME PATTERN NOT JUST
WITH THIS ONE CONGENITAL ANOMALY
BUT ALSO WITH ANOTHER ONE,
ESOPHAGEAL ATRESIA, SIMILAR
LEVELS OF COMPLEXITY, AND
SIMILARLY, BEING ABLE TO REALIZE
THAT THEY AFFECT NOT JUST THE
DEVELOPMENT OF THE AERO DIE
JEFFTIVE SYSTEM BUT ALSO OTHER
THINGS LIKE THE HEART, THE BRAIN
AND OTHER PARTS OF THE BODY.
AGAIN, ANIMAL MODELS CAN BE
HELPFUL, BEING SURE OF THESE
RESULTS WHEN WE DON'T SEE VERY
MANY PEOPLE WITH THESE SAME
CONDITIONS, AND IN FACT WE'VE
BEEN ABLE TO DO THIS IN VERY
HIGH THROUGHPUT BY USING ANIMALS
LIKE FROGS TO BE ABLE TO
RECAPITULATE THE SAME BIOLOGY
THAT WE SEE IN HUMANS AND OTHER
MODEL ORGANISMS.
AS WE'RE DOING THIS, WE REALIZE
THAT THERE IS EXTREME
COMPLEXITY.
THAT IS THERE CAN BE CHANGES OR
ALTERATIONS IN MANY, MANY, MANY
DIFFERENT GENES THAT CAN AFFECT
NOT JUST THE ARR AERODIGESTIVE
SYSTEM BUT IN FACT OTHER AREAS
OF THE BODY AS WELL.
AS WE DO THIS, WE'RE ABLE TO SEE
THAT SOME OF THESE DIFFERENCES
ALSO HAVE EFFECTS NOT JUST IN
THE PART OF THE BODY, BUT
IMPORTANTLY, THE PART OF THE
BRAIN THAT WE OFTENTIMES VERY
MUCH CARE ABOUT IN TERMS OF THE
ULTIMATE OUTCOME.
AND IN FACT, ALL OF THESE ARE
CONNECTED IN THE SHORT AND THE
LONG TERM.
I'M JUST GOING TO SKIP THROUGH.
WE'VE REALIZED THAT MANY OF
THESE STUDIES REQUIRE VERY LARGE
NUMBER, AND ONE STUDY THAT WE'VE
DONE, FOR INSTANCE, OF AUTISM
NOW HAS OVER 100,000 INDIVIDUALS
WITH AUTISM PARTICIPATING, AS
WELL AS OVER 200 THOW 200,000 OR
FAMILY MEMBERS.
WE APPRECIATE THAT TO UNDERSTAND
THE COMPLEXITY OF THE SPECTRUM
OF AWFUL, WE AUTISM, WE HAVE TO
HAVE EVERYONE REPRESENTED, AND
WE DON'T WANT TO LEAVE ANYONE
BEHIND.
AS WE'RE DOING THIS, WE REALIZE
WE'RE JUST BEGINNING TO
UNDERSTAND THIS COMPLEXITY.
FOR THESE DE NOVO GENETIC
VARIANTS, WE REALIZE WE
UNDERSTAND ABOUT TWO THIRDS OF
THOSE GENES INVOLVED, BUT WHEN
IT COMES TO ALSO INHERITED
VARIANTS THAT ARE PASSED DOWN
WITHIN THE FAMILIES, WE ACTUALLY
ONLY UNDERSTAND A SMALL
FRACTION, ABOUT 15% OF THOSE
GENETIC VARIANTS.
AND IN THOSE CASE, WE USE THESE
TO UNDERSTAND BIOLOGY.
WE USE THESE TO UNDERSTAND THE
COMPLEXITY OF THE WAY OUR BRAINS
WORK, ABOUT WHAT UND UNDERLIES
BEHAVIOR SO WE CAN HELP EACH
INDIVIDUAL BE THE BEST VERSION
OF THEMSELVES, BY UNDERSTANDING
THIS COMPLEX NEUROBIOLOGY, WE
SHOULD BE ABLE TO UNDERSTAND
BETTER WAYS OF SUPPORTING
INDIVIDUALS, HELP TO EDUCATE
THEM BETTER, AND TO HELP WITH
SOME OF THOSE THINGS THAT WE'VE
LEARNED FROM "SESAME STREET."
THAT EMOTIONAL REGULATION AND
EXECUTIVE FUNCTION.
AS WE DO THIS, WE THOUGHT IT WAS
QUITE IMPORTANT TO ENGAGE OUR
PARTICIPANTS IN OUR RESEARCH
STUDY AND AS WE'VE DONE THAT,
WE'VE RETURNED THAT INFORMATION
BACK TO PARTICIPANTS.
RETURNING, FOR INSTANCE, RESULTS
OF GENETIC INFORMATION SO THAT
WE COULD LEARN TOGETHER ON THIS
JOURNEY.
AS WE'VE DONE THIS, WE'VE SET UP
INDIVIDUAL COMMUNITIES AROUND
EACH OF THESE GENETIC CONDITIONS
SO THAT WE CAN LEARN TOGETHER.
THESE HAVE NOW SPAWNED
INDIVIDUAL GENETIC CONDITIONS IN
A PROGRAM CALLED SIMON
SEARCHLIGHT IN NOW OVER 170
INDIVIDUAL CONDITIONS WHERE WE
ARE LEARNING TOGETHER.
EACH OF THESE CONDITIONS HAS ITS
OWN PROFILE, ITS OWN UNIQUE
CHARACTERISTICS, AND WITHIN
THIS, WE FORMED INTERNATIONAL
COMMUNITIES WITH FAMILIES
HELPING FAMILIES, AND SUPPORTED
BY INDIVIDUALS LIKE DOCTORS,
PSYCHOLOGISTS, THERAPISTS,
EDUCATORS, INDIVIDUALS IN PUBLIC
POLICY SO THAT WE'RE WORKING
TOGETHER TO ENRICH THE LIVES OF
THOSE CHILDREN.
IT'S NOT EASY, BUT WE'RE MAKING
PROGRESS.
AS WE'RE DOING THIS, WE REALIZE
THAT WE OFTENTIMES NEED TO LEARN
THIS INFORMATION EARLIER.
THAT IS THAT ALONG THIS
DIAGNOSTIC JOURNEY, IT MAY TAKE
PARENTS OTHERWISE SOMETIMES
YEARS OR EVEN DECADES TO COME TO
AN ANSWER, AND BY DOING THIS
MORE EFFICIENTLY AND FASTER,
HELPS WITH THE FRUSTRATION THAT
CAN COME FROM WANDERING IN THE
WILDERNESS, NOT HAVING A CLEAR
GUIDEBOOK OF HOW TO BE ABLE TO
NAVIGATE THIS COMPLEX SPACE.
FAMILIES HAVE APPRECIATED THAT
AAN EARLIER DIAGNOSE HELPS THEM
TO GET TO SOME OF THE ANSWERS
AND FIND PROVIDERS AND OTHER
FAMILIES THAT CAN HELP THEM IN
THIS JOURNEY.
THERE ARE NOW IN PLACE WAYS OF
BEING ABLE TO HELP FROM A
GENETIC POINT OF VIEW AND DO
THIS ON SCALE, TO BE ABLE TO
COME TO THE INFORMATION, IN SOME
CASES PRENATALLY, TO HELP AFTER
DELIVERY, AND IN SOME CASES,
NEONATALLY TO BE ABLE TO GET
THIS INFORMATION IN DAYS RATHER
THAN POTENTIALLY YEARS OR EVEN
DECADES.
AS WE'VE DONE THIS, WE'VE
STARTED AN IMPORTANT NEW
INITIATIVE FOR EQUITY.
IT'S A PROGRAM WE CALL GUARDIAN,
THE GENOMIC UNIFORM SCREENING
AGAINST RARE DISEASES IN ALL
NEWBORNS, LET ME UNDERSCORE
"ALL."
WITH THIS, THIS IS TAKING THE
SAME PRINCIPLES THAT WE'VE
PREVIOUSLY USED AS PEDIATRICIANS
FOR NEWBORN SCREENING, BUT
EXPANDED THIS BEYOND THE USUAL
40 OR 50 CONDITIONS THAT MOST
STATES PERFORM.
WE'VE DONE THIS BY USING A NEW
METHOD OF EARLY DIAGNOSIS, THAT
OF DNA SEQUENCING.
BY DOING SO, WE USE THE SAME
NEWBORN SCREENING BLOOD SPOT
THAT WE USE FOR CONDITIONS LIKE
FENYLKETONURIA, CONDITIONS
TREATABLE SO THEY CAN START
THEIR TREATMENT AS EARLY AS
POSSIBLE.
GIVEN THE COMPLEXITY OF THIS,
WE'VE STARTED EDUCATING FAMILIES
ABOUT THESE OPTIONS PRENATALLY
IN THE THIRD TRIMESTER, AND AS
WE'RE ROLLING THIS OUT, WE HOPE
TO BE ABLE TO EVENTUALLY
ACCOMMODATE 100,000 BABIES WHO
ARE BORN IN NEW YORK CITY AS
PART OF THIS PROJECT CALLED
GUARDIAN.
AS WE'RE DOING THIS, IT IS NOT
SIMPLY ABOUT A DIAGNOSIS.
IT IS NOW USING THAT INFORMATION
TO BE ABLE TO MEET STANDARDS OF
CARE AND ALLOW INDIVIDUALS TO
HAVE ACCESS TO THE SAME
INFORMATION AND TO THE SAME
SURFACES.
SO THE DIAGNOSIS IS BUT THE
BEGINNING OF THIS STRATEGY.
AS WE'RE DOING THIS, WE REALIZE
THAT WE'RE STILL LEARNING.
WE DON'T UNDERSTAND HUMAN
GENETIC VARIATION, ESPECIALLY
NOT FOR INDIVIDUALS WHO ARE NOT
OF EUROPEAN ANCESTRY.
SO AS WE'RE DOING THIS, WE'RE
CONTINUING TO LEARN AND
CONTINUING TO APPLY THIS NEW
INFORMATION TO ALL BABIES GOING
FORWARD.
WE'RE ALSO USING THE SUPER
HIGHWAYS OF INFORMATION WE HAVE
IN MEDICINE, THE ELECTRONIC
HEALTH RECORD.
WE'RE USING THIS TO POPULATE
THESE SO THAT PEDIATRICIANS, NO
MATTER WHERE THEY'RE LOCATED,
CAN ACCESS THE STANDARDS OF CARE
THAT WE NEED TO TAKE CARE OF
CHILDREN WITH RARE CONDITIONS.
EVEN THOUGH THESE RARE
CONDITIONS ARE INDIVIDUALLY RARE
AND MIGHT BE ONE IN 10,000 OR
ONE IN 100,000 CHILDREN,
COLLECTIVELY THEY ARE EXTREMELY
COMMON AND SEEN IN APPROXIMATELY
10% OF THE POPULATION.
SO DOING THIS SOLVES THESE
PROBLEMS NOT JUST FOR ONE CHILD
AT A TIME, BUT REALLY PROVIDES
SYSTEMS OF CARE THAT WE CAN USE
AND DISSEMINATE QUITE BROADLY TO
MAKE SURE ALL CHILDREN ARE ABLE
TO BENEFIT AND LIVE THE
HEALTHIEST VERSIONS OF
THEMSELVES.
AS WE'RE DOING THIS, WE ALSO
BELIEVE THAT FAMILIES THEMSELVES
ARE INCREDIBLY IMPORTANT
PARTNERS ON THIS JOURNEY, SO
SUPPLYING THIS INFORMATION TO
THEM AS WELL IN USER-FRIENDLY
WAYS, IN INFORMATION USING PLAIN
LANGUAGE, ALLOWS THEM TO ACCESS
THIS IN MANY DIFFERENT LANGUAGES
AND WAYS THAT THEY CAN DIGEST
AND BE ABLE TO USE
COLLABORATIVELY WITH THEIR
PROVIDERS AND WITH THEIR
THERAPISTS AND TEACHERS TO AGAIN
SUPPORT THEIR CHILDREN TO BE
THEIR BEST SELVES.
AS WE'RE DOING THIS, WE REALIZE
THAT THERE ARE MANY THINGS TO
LEARN BUT WE'RE LEARNING
TOGETHER.
WE'RE LEARNING ACROSS THE
DIVERSITY OF OUR COMMUNITIES AND
AS WE'RE DOING THIS, WE'RE
PROTECTING PRIVACY, BUT BEING
ABLE TO SHARE DATA IN WAYS THAT
ARE RESPONSIBLE SO WE CAN ALL
LEARN FASTER THROUGH THE BENEFIT
OF THE NEXT GENERATION OF OUR
CHILDREN.
I'D LIKE TO THANK THE MANY
PEOPLE THAT MAKE THIS POSSIBLE
AND THAT WORKED HARD EVERY
SINGLE DAY FOR THE CARE OF OUR
CHILDREN.
THANK YOU.
>>THANK YOU, DR. CHUNG.
NOW REMEMBER, IF YOU HAVE
QUESTIONS FOR DR. CHUNG, PLEASE
SUBMIT THEM TO
NICHDPRESS@MAIL.NIH.GOV.
AND NOW OUR NEXT SPEAKER,
DR. AUDREY ODOM JOHN, WILL JOIN
US AT THE VIRTUAL PODIUM.
SHE IS THE STANLEY PLOTKIN
ENDOWED CHAIR, CHIEF OF THE
DIVISION OF PEDIATRIC DISEASES
AT THE CHILDREN'S HOSPITAL OF
PHILADELPHIA.
DR. JOHN IS AN INVESTIGATOR IN
THE PATHOGENESIS OF INFECTIOUS
DISEASES OF THE WELCOME FUND AND
HAS BEEN RECOGNIZED WITH SEVERAL
HONORS INCLUDING THE EMERGING
LEADER AWARD AT DUKE UNIVERSITY
SCHOOL OF MEDICINE, A YOUNG
INVESTIGATOR AWARD OF THE
AMERICAN CHEAMERICAN CHEMICAL S,
INFECTIOUS DISEASE, AND WAS THE
INAUGURAL IDEA INCUBATOR GRAND
PRIZE WINNER OF THE INFECTIOUS
DISEASES SOCIETY OF AMERICA.
PLEASE JOIN ME IN WELCOMING
DR. AUDREY ODOM JOHN.
>>HELLO, EVERYONE, AND THANK
YOU, VALERIE, FOR THE KIND
INTRODUCTION.
IT'S A PLEASURE TO GET A CHANCE
TO INTRODUCE SOME OF OUR MORE
RECENT WORK ON IMPROVING THE
DIAGNOSIS OF PEDIATRIC
INFECTIONS.
THERE WE GO.
SO I'D LIKE TO START WITH A
CLINICAL CASE, WHICH IS
SOMETHING WE SAW VERY EARLY ON
IN THE PANDEMIC.
THIS WAS A 5-YEAR-OLD CHILD,
PREVIOUSLY HEALTHY, WHO
PRESENTED TO OUR HOSPITAL
EMERGENCY ROOM WITH FEVER AND
SHOCK.
SHE WAS ADMITTED TO THE
INTENSIVE CARE UNIT, AND SHE HAD
HAD PRECEDING FOUR DAYS OF HIGH
FEVER FOLLOWED BY RASH AND RED
EYES, VOMITING AND DIARRHEA.
AND SHE AT THE TIME -- THIS WAS
DURING OUR VERY FIRST WAVE OF
COVID-19 IN OUR COMMUNITY, HIGH
LEVELS OF TRANSMISSION WITH
SARS-COV-2.
THIS QHIELD GO ON TO BE
DIAGNOSED WITH A CONDITION
CALLED MISC, MULTISYSTEM
INFLAMMATORY DIN DROME IN
CHILDREN, WHICH IS ASSOCIATED
WITH PRECEDING SARS-COV-2
INFECTION ABOUT FOUR TO SIX
WEEKS PRIOR TO THIS ONSET OF
THIS CONDITION.
IT'S A CONDITION THAT'S
CHARACTERIZED BY SYSTEMIC
INFLAMMATION IN A WIDE
CONSTELLATION OF SYMPTOMS
INCLUDING RASH AND G.I.
SYMPTOMS, BUT FEW CHILDREN HAVE
ALL THE SYMPTOMS AND THEY CAN BE
TRULY LIFE-THREATENING.
MOST CHILDREN END UP IN THE ICU
BUT RESPOND VERY WELL TO
TREATMENT.
AND THE KEY FOR THIS
PRESENTATION IS IT'S VERY HARD
TO DIAGNOSE, AND THIS WAS A
PROBLEM EARLY ON IN THE PANDEMIC
AND CONTINUES TO BE SO TO THIS
DAY.
THE CLINICAL CHALLENGE REALLY
THAT WE SOUGHT TO ADDRESS WAS
WHICH CHILD OR TEEN WHO PRESENTS
WITH FEVER AND VOMITING HAS
MIS-C?
AS YOU IMAGINE, THIS WAS A
DISEASE THAT REALLY HAD A VERY
HIGH LEVEL OF CONCERN BY FRONT
LINE EMERGENCY ROOM PHYSICIANS
EARLY ON IN THE PANDEMIC, WHERE
WE WERE ALL LEARNING ABOUT THIS
DISEASE IN THE FIRST PLACE.
THERE WERE A NUMBER OF CASES
THAT HAD BEEN SEEN IN THE
EMERGENCY ROOM, SENT HOME
BECAUSE THEY WERE THOUGHT TO
HAVE VIRAL GASTROENTERITIS, BUT
RETURNED IN SHOCK.
AND THEN, OF COURSE, WHEN YOU'RE
IN THE MIDDLE OF A WAVE AND
YOU'RE SEEING CASE AFTER CASE OF
MIS-C, THERE WAS ANCHORING BIAS.
SO A NUMBER OF CHILDREN WERE
ADMITTED, THOUGHT TO HAVE MISS
BEING AND HAD DELAYED TREATMENTS
BECAUSE THEY ACTUALLY HAD
NON-MISS BEING CONDITI
NON-MIS-C.
OUR SOLUTIONS REALLY RELIED ON
THIS FUNDAMENTAL SORT OF
BIOLOGICAL PRINCIPLE, WHICH IS
THAT PEOPLE STINK.
WHAT DO WE MEAN BY THAT?
WE MEAN PEOPLE GAVE OFF A WIDE
VARIETY OF VOLATILE ORGANIC
COMPOUNDS WITH OUR RECEPTORS
RECOGNIZE AS AS WELL SMELLS BUTN
ALSO PICK UP BY SPECTROMETRY.
WE'VE BEEN PARTICULARLY
INTERESTED IN BREAD BREATH VOLAS
BECAUSE BREATH IS A VERY RICH
SUBSTANCE IN HYDROCARBONS THAT
HAVE THE SPECIFICITY WHICH MEANS
THEY CAN BE DETECTED BY OLDER
TECHNOLOGIES LIKE BREATHALYZERS
JUST LIKE THE BOMB SNIFFERS USED
IN THE AIRPORT, FOR INSTANCE.
SO THEY'VE BEEN REALLY,
INTERESTED IN BREATH AS A SOURCE
OF INFORMATION ABOUT WHAT'S
GOING ON IN THE REST OF THE
BODY.
AND OF COURSE THAT'S BECAUSE
BREATH ITSELF IS REALLY A WINDOW
TO THE BLOOD.
WE KNOW THE ALVEOLI IN THE LUNGS
ARE REALLY EXACTLY WHERE GAS
CHANGE OCCURS IN THE BODY AND SO
THE COMPOUNDS THAT ARE PRESENT
IN THE GUT ARE REALLY REFLECTIVE
OF WHAT'S GOING ON IN THE BODY
AT LARGE.
AND OUR WORK HAS REALLY RELIED
ON A VERY STRAIGHTFORWARD
PIPELINE OF BIOMARKER DISCOVERY,
WHICH IS OF COURSE WE COMPARE
PATIENTS WITH AND WITHOUT A
PARTICULAR CONDITION.
WE USE A VARIETY OF SAMPLES
PARTICULARLY INTERESTED IN
BREATH BUT OTHER NONINVASIVE
SAMPLES LIKE URINE AND SALIVA
ARE ALSO IMPORTANT.
WE USE HIGH DIMENSIONAL MASS
SPECTROMETRY TO UNDERSTAND THE
DIFFERENCES BETWEEN PATIENTS
WITH AND WITHOUT THE DISEASE TO
IDENTIFY BIOMARKERS THAT THEN
MIGHT BE ABLE TO USE FOR
NONINVASIVE DIAGNOSTICS.
AND OUR WORK IN SARS-COV-2 AND
MIS-C ARE REALLY BUILT ON
LONG-STANDING WORK IN OUR GROUP
ON A DIFFERENT DISEASE, WHICH IS
MALARIA.
PARTICULARLY IMPORTANT FOR
GLOBAL CHILD HEALTH.
MALARIA KILLS ON AVERAGE ABOUT
AS MANY PEOPLE EVERY YEAR AS
COVID-19 DID IN 2020.
AND MOST OF THE DEATHS DUE TO
MALARIA ARE IN CHILDREN UNDER
THE AGE OF 5 OR IN PREGNANT
WOMEN.
AND WE HAD PREVIOUSLY BEEN
INTERESTED IN UNDERSTANDING
WHETHER WE COULD USE BREATH AS A
DIAGNOSTIC TOOL FOR MALARIA BY
COMPARING FEBRILE CHILDREN WITH
AND WITHOUT MALARIA AND TO
INTERVIEW AN INDEPENDENT COHORT
TO NOT ONLY VALIDATE THAT THESE
BREATH BIOMARKERS ARE PLENTY IN
CHILDREN, SPECIFICALLY, MALARIA,
BUT THAT THEY, IN FACT, RESPOND
TO TREATMENT BY ANALYZING
CHILDREN AFTER THEY'VE UNDERGONE
MALARIAL TREATMENT.
OBVIOUSLY WHEN THE PANDEMIC HIT,
MY LAB WAS ABLE TO UNDERSTAND
WHETHER WE COULD USE NONINVASIVE
CLINICAL SAMPLES FOR CLINICAL
DIAGNOSIS OF SARS-COV-2.
WE STOOD UP THIS STUDY WHICH WE
CALL THE BUS STUDY FOR BREATH,
URINE AND SALIV V SALIVA.
THAT STUDY ALSO TOOK ADVANTAGE
OF THE VETERINARY SCHOOL AT THE
UNIVERSITY OF PENNSYLVANIA AND
WE COLLABORATED WITH THE
DIRECTOR OF THE PENNVET WORKING
DOG GROUP WHO ACTUALLY TEACH
DOGS TO SNIFF OUT DISEASE FROM
DIFFERENT NONINVASIVE SAMPLES,
AND THEY'VE HAD SOME INCREDIBLE
SUCCESSES INCLUDING THINGS LIKE
OVARIAN CANCER.
AND TO CUT RIGHT TO THE CHASE,
THE DOGS DO GREAT.
SO THIS IS AN EXAMPLE OF THE
DATA FROM THE DOGS, BUT THIS IS
I THINK EIGHT DIFFERENT DOGS
THAT WERE TRAINED OP URINE
SAMPLES FOR CHILDREN WITH OR
WITHOUT SARS-COV-2.
THE AVERAGE SENSITIVITY IS OVER
85%, AND THE AVERAGE SPECIFICITY
IS ABOUT 92%.
AND THERE'S SOME DOG TO DOG
VARIABILITY, BUT YOU CAN SEE
THERE DIXIE NEVER MISSED A BEAT.
SHE LITERALLY HAD 100% OF
SENSITIVITY AND SPECIFICITY IN
HER ABILITY TO DETECT SARS-COV-2
IN CHILDREN AND TEENS.
SO EVEN BEFORE WE DID THE MASS
SPEC WE KNEW THERE WOULD BE A
DIFFERENCE IN CHILDREN WITH
SARS-COV-2 DUE TO INFECTION.
AND IN FACT THAT'S WHAT WE SAW
WAS THE CASE.
YOU CAN SEE HERE THE VOLCANO
PLOT SHOWING THERE ARE SOME
SPECIFIC BIOMARKER, IN THIS
CASE, SIX DIFFERENT BIOMARKERS
THAT CHARACTERIZED THE BREATH OF
CHILDREN WITH SARS-COV-2, AND BY
CLUSTERING ANALYSIS, YOU COULD
REALLY SEE THAT THESE BIOMARKERS
WERE DIAGNOSTICS FOR SARS-COV-2.
WE ENROLLED A GROUP OF CHILDREN
TO EVALUATE THESE BIOMARKERS.
THE NUMBERS HAVEN'T SHOWED UP
VERY WELL BUT OUR OVERALL
ACCURACY WAS ON THIS 90% WITH
SENSITIVITY OF ABOUT 9 #%.
9 -- ABOUT
91% SO WE DID REALLY EXCELLENT
WITH THE BREATH BIOMARKERS IN
TERMS OF OUR ABILITY TO DIAGNOSE
SARS-COV-2 INFECTION IN
CHILDREN.
SO BACK TO OUR ORIGINAL PROBLEM.
WE HAD BIOMARKERS OF SARS-COV-2
BUT WE WERE REALLY PARTICULARLY
INTERESTED IN DIAGNOSIS OF
MIS-C.
WE WERE FORTUNATE TO OBTAIN
FUNDING THROUGH THE PREVAIL KIDS
PROGRAM TO SET UP A PIPELINE OF
PROSPECTIVE STUDY TO COLLECT
SAMPLES FROM CHILDREN WHO WERE
UNDERGOING EVALUATION FOR MIS-C
IN OUR EMERGENCY ROOM, AND WE
REALLY TRIED TO INTEGRATE ALL
THE INFORMATION WE COULD GET
FROM THESE CHILDREN, INCLUDING
DATA FROM THE ELECTRONIC MEDICAL
RECORD, BUT OUR PERSPECTIVE
METABOLOMICS, BREATH, EURNG AND
SALIVA, AND COMPREHENSIVE YOU MU
KNOW PROFILE AS THEY PRESENT
QUITE AN INFLAMMATORY SYNDROME
AND WE THOUGHT SOME OF THEIR
INFLAMMATORY BIOMARKERS MIGHT BE
AS DIAGNOSTIC OR BETTER THAN OUR
METABOLOMICS BIOMARKERS AND WE
USED MACHINE LEARNING TO REALLY
NARROW DOWN AND IDENTIFY THE
MOST DIAGNOSTIC OF THESE
FEATURES IN THESE CHILDREN.
WHAT WE FOUND IS THAT CHILDREN
WITH MIS-C HAVE MARKED CHANGES
IN BREATH METABOLITES.
THOSE THAT WERE BEING EVALUATED
IN THE EMERGENCY ROOM, THIS IS
JUST A HEAT MAP OF DIFFERENT
BREATH FEATURES, AND YOU CAN SEE
WHICH CHILDREN HAVE MIS-C AND
WHICH CHILDREN HAVE NON-MIS-C
BUT FEVER.
THE CHILDREN WITH MIS-C REALLY
STAND OUT DRAMATICALLY FROM
CHILDREN WHO HAVE OTHER
INFLAMMATORY OR INFECTIOUS
CONDITIONS BUT DON'T HAVE MIS-C.
YOU MIGHT THINK THAT MAYBE ALL
WE'RE SEEING IS THAT RESIDUAL
COVID-19 BUT THAT TURNS OUT TO
NOT BE THE CASE, SO COMPARE
CHILDREN WITH MIS-C TO CHILDREN
WHO HAVE ACUTE COVID-19, THEY'RE
VERY, VERY DIFFERENT.
SO MIS-C IS REALLY A VERY
CHARACTERISTIC AND VERY
DIFFERENT SYNDROME IN TERMS OF
THE BREATH PROFI PROFILE THAT W.
IT TURNS OUT THE BREATH
BIOMARKERS, ALTHOUGH THEY WERE
AMAZING, WERE, IN FACT, NOT OUR
MOST DIAGNOSTIC BIOMARKERS.
SO AGAIN USING MACHINE LEARNING
TO INTEGRATE OUR DATA WE WERE
ABLE TO IDENTIFY IMMUNE CELL POM
POPP LAITIONS THAT WERE EVEN
MORE DIAGNOSTIC FOR MIS-C THAN
BREATH MYOMARKERS YIELDING THE
SPECIFICITY FOR OVER 90% FOR
EACH AND THE AREA UNDER THE
OPERATING CURVE OF ABOUT .99.
WE HAVE PUT IN OUR TRANSITION
PACKAGE AND HOPE TO CONTINUE TO
VALIDATE THESE IN ANOTHER
PROSPECTIVE COHORT IN
MULTICENTERS.
SO OUR GOAL IS REALLY RAPID,
EASY, SIMPLE DIAGNOSTICS FOR
PEDIATRIC INFECTION AND WE'RE
PARTICULARLY INTERESTED IN
BREATH VOLATILE TOOLS AS A
RELIABLE AND NONINVASIVE WINDOW
TO HELP A DISEASE WHEN VALIDATED
BIOMARKERS ARE ALREADY IN HAND
FOR MALARIA AND SARS-COV-2 BUT
THERE ARE A LOT OF REMAINING
QUESTIONS AND WE'RE EAGER TO
REALLY EXPAND ON THIS WORK BOTH
TO IMPROVE DIAGNOSTICS FOR OTHER
CONDITIONS WHICH ARE
PARTICULARLY CHALLENGING, SO
MANY OF YOU WILL BE FAMILIAR
WITH THE CHALLENGE OF DIAGNOSING
WHICH CHILD UNDER THE AGE OF 30
DAYS OF AGE WITH A FEVER
ACTUALLY HAS A SERIOUS BACTERIAL
INFECTION, AND WE DO A LOT OF
LUMBAR PUNCTURES FOR CHILDREN
WHO ACTUALLY DON'T HAVE SERIOUS
BACTERIAL INFECTION AT ALL.
EVERYBODY WOULD LIKE TO GET RID
OF THE DIAGNOSTIC CHALLENGE
WHICH IS STREP THROAT, AND WE'VE
ALSO HAD PROMISING WORK ON
NON-ALCOHOL FATTY LIVER DISEASE
WHERE DIAGNOSTICS IS LIVER
BIOPSY AND OBVIOUSLY MANY OF US
WOULD LIKE TO GET RID OF THAT AS
WELL.
AND IN PARTICULAR, AS WE THINK
ABOUT ROLLING OUT THESE
DIAGNOSTICS, TO ME IT'S VERY
IMPORTANT TO BEGIN TO ASK THE
QUESTION OF WHERE THESE
VOLATILES COME FROM IN THE FIRST
PLACE.
SO SOME OF THE VOLATILES WE SEE
IN MALARIA WE THINK ACTUALLY
COMES FROM THE PARASITE BUT
SARS-COV-2 DOESN'T MAKE ITS OWN
VOLATILES, IT'S CLEARLY HOST
RESPONSE WE'RE SEEING.
AND I ALSO THINK SOME OF THE
BREATH BIOMARKERS THAT ARE
PRESENT IN THE BREATH OF NORMAL
HEALTHY CHILD IS ACTUALLY COMING
FROM THE MICROBIOME.
AND SO WE RECENTLY RECEIVED
FUNDING AND ARE JUST BEGINNING
TO STAND UP A NEW STUDY TO
REALLY LOOK AT WHETHER OR NOT
THE BREATH IS TELLING US MORE
ABOUT WHAT'S GOING ON IN TERMS
OF THE COMPOSITION AND
METABOLITE PROFILE OF THE BIOME.
BEFORE AND AFTER THEY RECEIVE
ANTIBIOTICS FOR FEVER TO SEE IF
WE CAN SEE HOW CHANGES IN THE
FECAL MICROBIOME ARE REFLECTED
IN CHANGES IN BREATH VOCs.
SO THANK YOU SO MUCH FOR YOUR
TIME AND ATTENTION.
AND I LOOK FORWARD TO HEARING
QUESTIONS.
>>THANK YOU, DR. JOHN.
AND NOW WE WILL HAVE OUR FINAL
PRESENTATION FROM DR. KENNETH
DODGE.
IT IS MY DELIGHT TO WELCOME
DR. DODGE TO THIS VIRTUAL
PODIUM.
HE IS THE DISTINGUISHED
PROFESSOR OF PUBLIC POLICY AND
PROFESSOR OF PSYCHOLOGY AND
NEUROSCIENCE AT DUKE UNIVERSITY.
HE STUDIES EARLY CHILDHOOD
DEVELOPMENT, THE PREVENTION OF
VIOLENT BEHAVIOR IN CHILDREN AND
THE FAMILY, AND PUBLIC POLICIES
TO IMPROVE POPULATION OUTCOMES
FOR COMMUNITIES.
HE'S TRAINED AS A CLINICAL AND
DEVELOPMENTAL PSYCHOLOGIST.
HE EARNED HIS PH.D. IN
PSYCHOLOGY AT DUKE UNIVERSITY.
HE IS THE FOUNDING EMERITUS
DIRECTOR FOR THE DUKE CENTER FOR
CHILD AND FAMILY POLICY.
HE HAS PUBLISHED MORE THAN 500
SCIENTIFIC ARTICLES THAT HAVE
BEEN CITED MORE THAN 150,000
TIMES.
HE WAS ELECTED TO THE NATIONAL
ACADEMY OF MEDICINE IN 2015.
AND AGAIN, PLEASE JOIN ME IN
WELCOMING DR. DODGE TO THE
PODIUM.
>>THANK YOU, VALERIE, FOR THAT
VERY KIND INTRODUCTION.
AND THANK YOU, I WANT TO
PERSONALLY THANK YOU, VALERIE,
FOR YOUR GUIDANCE AND SUPPORT OF
MY WORK OVER MANY YEARS.
IT HAS MEANT A LOT TO ME.
I WOULD LIKE TO TALK WITH YOU
ALL TODAY ABOUT ACHIEVING
POPULATION IMPACT AS DISPARITY
ELIMINATION IN EARLY CHILD
DEVELOPMENT AND SUCCESS THROUGH
A CONCEPT OF UNIVERSAL FAMILY
PRIMARY CARE.
AS I DESCRIBE THIS WORK, I WANT
TO CONGRATULATE NICHD ON THIS
ANNIVERSARY AND GIVE THANKS TO
NICHD FOR ITS YEARS OF REPORT
THROUGH SEVERAL R01 GRANTS THAT
HAVE PROVIDED SUPPORT FOR THE
WORK I WILL DESCRIBE TO YOU.
I WANT TO START WITH A SOBERING
FACT.
FAMILIES AND YOUNG CHILDREN IN
THE UNITED STATES ARE IN GREAT
PERIL.
IN SPITE OF OUR COLLECTIVE
WEALTH, UNITED STATES STANDS
AMONG THE WORST AMONG DEVELOPED
COUNTRIES IN MATERNAL MORTALITY
AND EARLY CHILDHOOD MORTALITY.
IT GOES BEYOND MORTALITY.
OUR RATES OF CHILD ABUSE ARE
EXTRAORDINARILY HI.
22% WILL BE REPORTED TO CHILD
PROTECTIVE SERVICES FOR NEGLECT
BEFORE THEIR FOURTH BIRTHDAY,
AND KINDERGARTEN READINESS IS A
MAJOR PROBLEM IN THAT MORE THAN
A THIRD OF CHILDREN COME TO
SCHOOL UNPREPARED FOR
KINDERGARTEN.
WORSE ARE DISPARITIES IN FAMILY
WELL-BEING.
THIS GRAPH HERE, YOU CAN SEE
THAT EARLY CHILDHOOD MORTALITY
IS OFFER TWICE AS HIGH AMONG
BLACK CHILDREN AS IT IS AMONG
NON-HISPANIC WHITE CHILDREN.
IN THE MIDDLE GRAPH, YOU SEE
LACK OF KINDERGARTEN
PREPAREDNESS IS A MAJOR PROBLEM
WITH LOW INCOME CHILDREN, HAVING
OVER TWICE AS HIGH RATES OF LACK
OF READINESS AT KINDERGARTEN TRI
KINDERGARTENENTRY, AND ON THE RE
CHILD ABUSE STATISTICS WITH
RATES BEING THREE TIMES AS HIGH
AMONG BLACK CHILDREN OVER WHITE
CHILDREN.
SO HOW IS IT THAT SOME FAMILIES
SUCCEED AND SOME FAMILIES FAIL,
BEGINNING AT THE MOMENT OF
BIRTH?
FOR THOSE WHO ARE PARENTS IN THE
AUDIENCE, YOU MIGHT REMEMBER THE
DAY YOUR FIRST CHILD WAS BORN.
I REMEMBER WHEN MY SON GRAHAM
WAS BORN.
IT WAS THE MOST EXHILARATING DAY
OF MY LIFE.
IT WAS ALSO THE MOST FRIGHTENING
DAY OF MY LIFE BECAUSE MY WIFE
AND I DID NOT HAVE A CLUE FOR
HOW WE WOULD SUCCEED.
IN SPITE OF OUR EDUCATION, IN
SPITE OF OUR COMPARATIVE WEALTH,
WE WERE ALONE AND LOST AT SEA.
AT LEAST THAT'S WHAT I REMEMBER.
SO WE BEGAN OUR FIRST STUDY OF
PREDICTION OF CHILD ABUSE IN
FAMILIES BY FOLLOWING 500
PREGNANT WOMEN FROM THE TIME OF
PREGNANCY THROUGH AGE 24 MONTHS,
IN ORDER TO IDENTIFY PROCESSES
AND PREDICTORS OF EARLY CHILD
ABUSE IN THE FIRST SEVERAL
YEARS.
WE COLLECTED A LOT OF
INFORMATION ABOUT DEMOGRAPHIC
INDICATORS, POVERTY, PARENTAL
EDUCATION, ET CETERA, AND INDEED
THOSE ARE PREDICTORS OF CHILD
ABUSE, BUT WHAT STRUCK US EVEN
MORE SO WAS THAT CHILD ABUSE
OCCURS ACROSS INCOME SPANS AND
ACROSS EVERY GROUP THAT WE
STUDY.
FURTHERMORE, OUR ASSESSMENTS OF
CLINICAL INDICATORS WERE MUCH
STRONGER PREDICTORS TO ACCOUNT
FOR THE DEMOGRAPHIC FACTORS, BUT
ALSO TO PREDICT CHILD ABUSE TO A
MUCH STRONGER DEGREE THAN DID
THE DEMOGRAPHIC FACTORS.
94% OF FAMILIES AT BIRTH
REPORTED TO US A RISK FACTOR, A
NEED IN THEIR LIVES THAT MIGHT
DISPOSE THEM TO BE AT RISK FOR
CHILD ABUSE, NOT ALL DID, BUT
THE RISK FACTORS THAT OCCUR
ACROSS DEMOGRAPHIC GROUPS ARE
DIVERSE.
SOME FAMILIES CAME TO THE RISK
THROUGH MATERNAL DEPRESSION,
POSTPARTUM, OR ANXIETY, OR
PERHAPS A SUBSTANCE ABUSE
PROBLEM.
OTHER FAMILIES CAME TO THAT RISK
THROUGH DIFFICULTIES IN
PARENTING SKILLS AND
ATTRIBUTIONS THEY MAKE ABOUT
THEIR INFERENCE.
SOME COME TO THIS PROBLEM
THROUGH LACK OF SOCIAL SUPPORT.
AND FINALLY, SOME COME TO RISK
THROUGH LACK OF ACCESS TO GOOD
QUALITY HEALTHCARE OR COMMUNITY
RESOURCES TO SUPPORT THEM.
SO WHAT IS THE SOLUTION?
IF RISK IS DIVERSELY DISTRIBUTED
ACROSS GROUPS, AND YET THE
PRECISE PSYCHOSOCIAL FAMILY
PROBLEM THAT LENDS RISK IS
VARIABLE ACROSS FAMILIES, HOW DO
WE DEVELOP A PREVENTIVE
INTERVENTION SYSTEM TO LOWER THE
POPULATION RATE OF CHILD ABUSE
OUTCOMES?
THE SOLUTION THAT WE CAME UPON
AFTER MANY YEARS OF TRYING OTHER
SOLUTIONS IS A COMPREHENSIVE
SYSTEM OF WHAT WE CALL FAMILY
PRIMARY -- PRIMARY FAMILY CARE.
WE CAN LEARN LE SOBS FROM OTHER
SYSTEMS OF CARE THAT I BRIEFLY
WANT TO MENTION.
FIRST, WE IN THIS UNITED STATES,
200 YEARS AGO, DEVELOPED THE
FIRST K-12 EDUCATION AND THEN AS
A SYSTEM IT HAS SEVERAL
COMPONENTS.
IT'S UNIVERSAL, EVERY CHILD IS
OFFERED PUBLIC EDUCATION.
BUT IT'S NOT DELIVERED IN THE
PRECISE SAME WAY.
THERE IS DESCREEN SCREENING
GOING ON TO INDIVIDUALIZE FAMILY
CARE AND CARE WITHIN THE
EDUCATIONAL SYSTEM.
THEY'RE SCREENING FOR LEARNING
DISABILITIES, FOR DIFFERENT
KINDS OF EMOTIONAL NEEDS AND
SUPPORT.
THERE'S EVEN SCREENING FOR
NUTRITION PROBLEMS AND SOLUTIONS
AND SUPPORTED BREAKFAST AND
LUNCH PROGRAMS.
THIS IS ALL BASED IN AN
INFRASTRUCTURE THAT INCLUDES
SPECIAL EDUCATION, COUNSELORS,
NURSES, NUTRITIONISTS SO THERE'S
AN INFRASTRUCTURE OF SUPPORT.
THE SECOND EXAMPLE OF A SYSTEM
OF CARE IS WHAT WE DO IN
HEALTHCARE IN THIS UNITED
STATES.
WE HAVE UNIVERSAL ACCESS
HOPEFULLY, CERTAINLY ONE DOESN'T
NEED TO BE SICK TO GO SEE A
PEDIATRICIAN.
WE HAVE WELL-BABY CARE.
BUT THAT PRIMARY CARE PHYSICIAN
DOES IS TO SCREEN FOR A VARIETY
OF PROBLEMS AND TO CONNECT THAT
MAYBE AS NEEDED WITH AN
INFRASTRUCTURE OF SUPPORTS.
IT MAY BE A NEUROSURGEON, IT MAY
BE A NUTRITIONIST, IT MAY BE A
PHYSICAL THERAPIST.
SO THERE ARE THESE THREE
COMPONENTS TO A UNIVERSAL SYSTEM
OF CARE OF UNIVERSAL ACCESS,
SCREENING FOR INDIVIDUAL NEEDS,
AND CONNECTION TO AN
INFRASTRUCTURE OF COMMUNITY
SUPPORTS.
SO WE THOUGHT ABOUT WHY IS THERE
NOT A SYSTEM OF CARE FOR
FAMILIES OF YOUNG CHILDREN IN
THESE UNITED STATES?
AND RESEARCHERS SUGGESTED THREE
DIFFERENT SOURCES.
FIRST IS A CULTURAL MYTH OF THIS
STAY-AT-HOME MOM WHO CAN DO IT
ALL.
DON'T KNOW IF THAT WAS EVER TRUE
BUT IT'S CERTAINLY NOT TRUE
TODAY AND MOST MOTHERS -- MOST
ADULTS LIVING IN HOMES OF YOUNG
CHILDREN ARE TRYING TO BE
EMPLOYED OUTSIDE HOME OR NEED TO
BE EMPLOYED OUTSIDE THE HOME.
THE SECOND SOURCE OF THIS LACK
OF SYSTEM OF CARE WAS WITH
DEVELOPMENTAL SCIENTISTS AND
PROFESSIONALS WERE SIMPLY WRONG.
AMERICAN MEDICAL ASSOCIATION FOR
YEARS OPPOSED HOME VISITING OF
FAMILIES, EDUCATORS OPPOSED
EARLY EDUCATION AS UNNECESSARY
UNTIL CHILDREN ACHIEVED THE AGE
OF REASON, AND DEVELOPMENTAL
SCIENTISTS DID NOT UNDERSTAND
NEURAL DEVELOPMENT.
OF COURSE WE'VE CHANGED WITH ALL
OF THE ADD VOON ADVANCES SUPPORY
NICHD IN UNDERSTANDING OF EARLY
BRAIN DEVELOPMENT, EARLY -- WHAT
I CALL INSIDIOUS RACISM, IF
WHITE FAMILIES ARE ABLE TO FIND
THEIR NEEDS WITHOUT A SYSTEM,
THEN THEY WOULD NOT SUPPORT THE
CREATION OF A SYSTEM AND THOSE
WHO ARE DISADVANTAGED THEN ARE
LEFT OUT IN THE COLD.
SO WE WORKED FOR YEARS TO
DEVELOP UNIVERSAL PRIMARY FAMILY
CARE THAT WE NOW CALL FAMILY
CONNECTS.
WE BEGAN FAMILY CONNECTS IN 2001
THROUGH A COMMITMENT BY THE DUKE
ENDOWMENT THAT HAD THREE
COMPONENTS.
FIRST IS TO SET OUR TARGET ON
THE ACHIEVING POPULATION OUTCOME
OF CHILD ABUSE, AND COST
REDUCTION AND DISPARITY
REDUCTION.
SECOND, THROUGH AN INTERVENTION
THAT'S PROTOCOL, THAT'S RELIABLE
AND REPLICABLE MODEL BASED ON
DEVELOPMENTAL SCIENCE AND THIRD
RANDOMIZED CONTROL TRIALS.
SO UNIVERSAL FAMILY CONNECTS IS
A PARADIGMATIC SHIFT THAT HAS
THREE PILLARS.
FIRST UNIVERSAL, TO INVITE
THEMSELVES INTO THE HOME FOR ONE
TO THREE VISITS.
80% OF FAMILIES AND COMMUNITY
ACCEPT THAT OFFER.
DURING THOSE VISITS, THE NURSE
CONNECTS WITH THE FAMILIES TO
SCREEN FOR NEEDS AND MATCH WITH
COMMUNITY RESOURCES.
AND THE THIRD IS COMMUNITY
RESOURCE INFRASTRUCTURE IN
DURHAM, NORTH CAROLINA.
WE HAVE AN INFRASTRUCTURE OF
OVER 400 AGENCIES THAT SUPPORT
FAMILIES AT BIRTH, AT MODEST
COST.
THIS SLIDE GIVES YOU AN EXAMPLE
OF SOME OF THE KINDS OF NEEDS
THAT OUR NURSES IDENTIFY WITH
FAMILIES.
ON THE LEFT ARE THE RISK DOMAINS
FOR EXAMPLE, ONE FAMILY MIGHT
HAVE A NEED FOR A HOUSING LOAN,
HOUSING SUPPORT.
AND ON THE RIGHT SIDE IS THE
POSSIBLE COMMUNITY CONNECTION
THAT THE NURSES TRAIN TO MATCH
TO THE IDENTIFICATION OF THAT
NEED.
AND THAT MIGHT BE CONNECTING THE
FAMILY WITH THE HOUSING
AUTHORITY OR SOCIAL SERVICES OR
THE NEED MIGHT BE FOR POSTPARTUM
DEPRESSION INTERVENTION AND THE
CONNECTION IS THROUGH MATERNAL
MENTAL HEALTH SERVICES.
IN ADDITION TO THIS BEING A
MANUALIZED PROTOCOL, OUR NURSES
ATTEND TO SPECIFIC NEEDS IN
DIFFERENT COMMUNITIES, AND THIS
GRAPH IS TO REMIND ME TO REMIND
YOU THAT OUR NURSES ARE TRAINED
TO DO THAT, SO FOR EXAMPLE, IN
DURHAM, NORTH CAROLINA, OUR
NURSES REACH FAMILIES TO SUPPORT
THEM IN RESPONDING TO COMMUNITY
RACIAL INJUSTICE TO HELP MOTHERS
IDENTIFY THAT THEY'RE THE OBJECT
OF INJUSTICE AND HOW TO RESPOND
TO NAVIGATE THEIR WAY THROUGH A
SYSTEM.
ON THE RIGHT SIDE, THE QUOTE IS
TO REMIND ME THAT NURSES ADAPTED
DURING COVID.
INSTEAD OF IN-PERSON HOME
VISITS, WE HAD TO ADAPT A
VIRTUAL VISITATION AND
SUCCESSFULLY DID THAT AND
THANKFULLY WE'RE NOW RETURNING
TO HOME VISITS NOW.
WANT TO MOVE TO EVALUATION.
SO FIRST RANDOMIZED CONTROL
TRIAL.
WE RANDOMLY ASSIGNED EVERY
DURHAM RESIDENT BIRTH OVER AN
18-MONTH PERIOD INTERVENTION OR
CONTROL CONDITION, ALMOST 5,000
FAMILIES.
WE IMPLEMENTED THE INTERVENTION
OF THOSE ASSIGNED TO THAT WITH
STRONG PARTICIPATION AS I SAID
80% PARTICIPATED IN 86% OF
PARTICIPATING INDIVIDUALS
ACTUALLY COMPLETED THE PROGRAM.
THEY IDENTIFIED A WIDE VARIETY
OF NEEDS.
AND THEY THEN -- LET'S SEE.
IMPLEMENTED AN EVALUATION TRIAL
IN WHICH WE CAME ALONG AT AGE
SIX MONTHS THROUGH
CONDITION-BLINDED INTERVIEWS AND
FOLLOWED UP FAMILY THERE'S
5 YEARS OF AGE WITH REVIEW OF
ADMINISTRATIVE RECORDS.
OUR DATA ANALYTIC MODEL IS AN
INTENT TO TREAT REGRESSION MODEL
WITH COVARIATES.
SEVERAL FINDINGS.
FIRST OF ALL, OUR PROXIMAL GOAL
WAS TO CONNECT FAMILIES WITH
COMMUNITY AGENCIES.
YOU CAN SEE HERE COMPARING THE
CONTROL CONDITION FAMILIES ON
THE LEFT TO FAMILIES RANDOMLY
ASSIGNED INTENT TO TREAT ON THE
RIGHT, YOU CAN SEE THAT THOSE
ASSIGNED TO INTERVENTION OF
HIGHER COMMUNITY CONNECTION
RATES AT AGE 6 MONTHS, AMONG
BOTH BLACK AND WHITE FAMILIES.
SECOND GOAL OF INTERVENTION IS
TO IMPROVE MATERNAL
SELF-EFFICACY, REDUCE ANXIETY,
REDUCE DEPRESSION.
AND RANDOM ASSIGNMENT TO
INTERVENTION DID DEGREECE
MATERNAL ANXIETY AND CLOSES
RACIAL DISPARITY IN MATERNAL
ANXIETY SO THIS IS WONDERFUL
NEWS FOR US THAT WE'RE HAVING
IMPACT BUT THAT WE'RE ALSO
REDUCING DISPARITIES IN THIS
IMPORTANT OUTCOME.
REDUCING MATERNAL ANXIETY,
IMPROVING PARENTAL SELF-EFFICACY
THEN IS RELATED IN DECREASES TO
EMERGENCY MEDICAL CARE THAT WE
WERE ABLE TO IDENTIFY, ABOUT A
THIRD LOWER RATE OF EMERGENCY
MEDICAL CARE EPISODES AND COSTS
COMPARED TO THOSE ASSIGNED TO
CONTROL, AND WE WERE ABLE TO
CLOSE THE RACE DISPARITY IN
EMERGENCY MEDICAL CARE BY A
MODEST AMOUNT.
THIS PUTS US IN THE RIGHT
DIRECTION BUT NOWHERE NEAR WHERE
WE NEED TO BE AND WILL
ULTIMATELY WANT TO BE.
ASSIGNMENT TO FAMILY CONNECTS
INTERVENTION, CHILD ABUSE
INVESTIGATIONS BY 39%, AND WE'RE
ABLE TO CLOSE THE RACE DISPARITY
IN CHILD ABUSE INVESTIGATIONS BY
28%.
SO WE'RE GRATIFIED BY THESE
FINDINGS.
WE WANTED TO TURN THOSE INTO A
BENEFIT COST RATIO, AND YOU CAN
SEE HERE THAT FOR EVERY DOLLAR
OF INVESTMENT IN FAMILY CONNECT
INTERVENTION, WE WERE ABLE TO
REDUCE EMERGENCY MEDICAL CARE
COSTS BY OVER $3.
WE'RE VERY GRATIFIED BY THIS.
WE NEEDED TO REPLICATE THIS TO
BE SURE, SO WE CONDUCTED A
SECOND RANDOMIZED CONTROL TRIAL
VERY SIMILAR TO THE FIRST, BUT
WITH A SMALLER NUMBER OF
FAMILIES.
WE IMPLEMENTED THE INTERVENTION.
AGAIN WITH STRONG PARTICIPATION
RATES AND A HIGH RATE OF
IDENTIFYING FAMILY NEEDS.
SAME KINDS OF OUTCOME MEASURES
AND THE SAME KINDS OF DATA
ANALYTIC INTENT TO TREAT MODEL.
WE FOUND AGAIN, I'LL JUST HAVE A
FEW SLIDES HERE, THAT RANDOM
ASSIGNMENT TO THE FAMILY
CONNECTS INTERVENTION DECREASED
THE NEED FOR EMERGENCY MEDICAL
CARE BY 32% AND CLOSES THE RACE
DISPARITY BY A QUARTER.
AGAIN MOVING IN THE RIGHT
DIRECTION.
FINALLY, FAMILY CONNECTS ALSO
DECREASED CHILD ABUSE
INVESTIGATIONS IN THIS TRIAL BY
44%, AND WE WERE ABLE TO REDUCE
THE RACE DISPARITY IN CHILD
ABUSE INVESTIGATIONS BY 57%.
SO WHERE DOES THIS LEAD US?
IN TWO TREXES.
DIRECTIONS.
ONE IS WE ARE NOW DISSEMINATING
THE INTERVEN INTERVENTION COMMUE
AROUND THE NATION AS WE CONTINUE
TO LEARN.
AND FINALLY, WE'RE CONTINUING
OUR RESEARCH AND INNOVATION AND
DEVELOPMENT OF INTERVENTIONS.
ONE OF THE STRONGEST MESSAGES
THAT FAMILIES GAVE US AS WE DID
THESE INTERVENTIONS IS THAT THEY
WANTED US TO START EARLIER,
BEFORE BIRTH.
AND SO WE HAVE DEVELOPED AN
INTERVENTION NOW THAT BEGINS
WHEN A WOMAN COMES IN TO
PRENATAL CARE, OB-GYN CLINICS,
WHICH WE DO THE SAME KINDS OF
THINGS, TO CONNECT WITH THE
FAMILY, IDENTIFY NEEDS AT THAT
TIME AND CONNECT THEM TO
COMMUNITY RESOURCES TO ADDRESS
THOSE NEEDS.
FAMILIES ALSO WANT US TO EX-TEND
BEYOND BIRTH AND SO WE ARE
IMPLEMENTING AN INTERVENTION
WHICH LIKE PRIMARY CARE COME
BACK EVERY YEAR AT THE CHILD'S
BIRTHDAY AS 12 MONTHS, 24
MONTHS, 36 MONTHS, T TO DO THE
SAME KIND OF THING, CONNECTING
WITH THE FAMILY, IDENTIFYING
NEEDS AT THAT AGE-SPECIFICALLY
PERIOD AND CONNECTING FAMILIES
WITH COMMUNITY RESOURCES TO
ADDRESS THOSE NEEDS.
WE'RE NOW IN THE PROCESS OF
EVALUATION FOR A RANDOMIZED
CONTROL TRIAL THAT SUNDAYWAY
NOW.
IS UNDERWAYNOW.
WE HOPE FOR CONTINUED SUCCESS
AND FOR NIH SUPPORT OF THIS WORK
AND WE'RE STILL AT IT.
THANK YOU VERY MUCH.
>>AND THANK YOU, DR. DODGE, AND
PLEASE JOIN ME IN THANKING ALL
OF OUR PANELISTS FOR SUCH
PROVOCATIVE AND COMPELLING
DISCUSSIONINGS.
NOW IT'S TIME FOR THE AUDIENCE
TO PARTICIPATE TO BRING ALL OF
YOU INTO THE MIX.
WE HAVE SEVERAL QUESTIONS THAT
HAVE COME UP DURING THE TALKS,
AND I'M GOING TO START FIRST
WITH A QUESTION FOR DR. CHUNG.
AN AUDIENCE MEMBER ASKS THAT THE
RELATIONSHIPS AMONG RESEARCHERS
IN THE ASD COMMUNITY HAS EVOLVED
OVER THE LAST FEW DECADES.
HOW CAN RESEARCHERS AND FAMILIES
CONTINUE TO WORK TOGETHER TO
ADVANCE RESEARCH ON ASD?
HAVE THERE BEEN DISCUSSIONS OR
CONSIDERATIONS ABOUT APPLYING
THE EHR DASHBOARD AND -- TO
OTHER CONDITIONS?
DR. CHUNG.
>>THAT'S A GREAT QUESTION.
SO AUTISM IS COMPLICATED BECAUSE
MUCH OF THE -- MANY OF THE
MANIFESTATIONS AND WHAT'S
IMPORTANT IS NOT PART OF THE
MEDICAL SYSTEM.
SO IT'S IMPORTANT TO BE ABLE TO
GET THE FULL PICTURE OF
INDIVIDUALS AND THAT INCLUDES
BEHAVIORS THAT MIGHT NOT BE
DOCUMENTED BUT ARE PART OF THE
SCHOOL DAY, PART OF THE HOME
DAY, SO WE'RE ALSO STARTING TO
EXPLORE NOW OTHER MORE GRANULAR
WAYS OF COLLECTING DATA.
LET ME SAY, THOUGH, THAT IT
STARTS FIRST WITH THE COMMUNITY,
SO THE FIRST THING WE DO IS
LISTEN TO MEMBERS OF THE
COMMUNITY, WHETHER THEY BE
PARENTS OR INDIVIDUALS ON THE
SPECTRUM, TO UNDERSTAND THEIR
PRIORITIES AND THEIR NEEDS, AND
THEN THINK OF THE RESEARCH
QUESTIONS AND HOW TO DESIGN THE
RESEARCH BASED ON THAT.
IT COMPLICATED BECAUSE THE
SPECTRUM IS TO WIDE AND THE
NEEDS ARE SO DIVERSE.
INDIVIDUALS THAT HAVE WHAT SOME
CALL PROFOUND AUTISM WHO ARE
NON-VERBAL, SELF-INJURIOUS, HAVE
A DIFFERENT SET OF NEEDS THAN
OTHER INDIVIDUALS WHO MIGHT BE
ANXIOUS BUT REALLY QUITE GIFTED,
AND NOT HAVE ANY MEDICAL ISSUES.
SO WITH THAT, THERE ARE NEW WAYS
TO BE ABLE TO USE DIGITAL DATA
AS WELL, SO INDIVIDUALS, FOR
INSTANCE, HAVE WEARABLE DEVICES,
CAN REPORT IN TERMS OF OTHER
SYMPTOM TRACKERS OR OTHER WAYS
OF BEING ABLE TO PROVIDE DATA,
BUT ALL OF THOSE, OF COURSE,
VOLUNTARY IN TERMS OF DOING
THIS.
THERE ARE OTHER WAYS TO COLLECT
EEG DATA AS ANOTHER EXAMPLE IN
TERMS OF INDIVIDUALS WHO MAY
HAVE CO-OCCURRING EPILEPSY AS A
PORTION OF THIS.
SO THE BASIC ANSWER IS SUFFICE
TO SAY IT'S COMPLICATED AND
THERE ARE MULTIPLE DIMENSIONS
AND SORT OF SUBSTUDIES WITHIN
STUDIES TO MEET THE NEEDS OF
THOSE PARTICULAR COMMUNITIES.
BUT WITHIN DOING THIS, I THINK
OUR PRIMARY RESPONSIBILITY IS TO
KEEP DATA PRIVATE AND TO ADDRESS
THE NEEDS OF INDIVIDUALS AS THEY
REPRESENT THEM TO US.
>>WONDERFUL, THANK YOU.
DR. JOHN, A QUESTION HAS COME IN
FOR YOU.
AND I WOULD IMAGINE THAT THERE
ARE GOING TO BE LOTS OF
QUESTIONS ABOUT THE DOGS THAT
YOU SHOWED ON ONE OF YOUR
SLIDES.
SO THIS IS THE START IN LEADING
TOWARD THAT.
DOES THE PRESENCE OF MIS-C
BIOMARKERS IN THE BREATH OFFER
ANY INCLUDES ABOUT WHY A CERTAIN
CHILD'S COVID INFECTION
PROGRESSES TO MIS-C IN THE FIRST
PLACE?
>>THANKS, THAT'S A GREAT
QUESTION.
AND THAT IS REALLY SOMETHING
THAT WE'RE WORKING ON HARD
BECAUSE WE REALLY DO
>>WE THINK THE KINDS OF THINGS
WE'RE SEEING IN THE BREATH GIVE
A CLUE TO WHAT THE UNDERLYING
BIOLOGY IS.
RIGHT NOW IT'S NOT CLEAR HOW ONE
CHILD SO GETS SARS COV2 NEVER
GOES ON TO HAVE MISC AND SOME
CHILDREN GO MISSED.
AND WHAT WE SEE WITH SOME OF OUR
BREATH BIOMARKERS IS REFLECTIVE
OF THE INTESTINAL INFLAMMATION
WHICH CHARACTERIZES THE
CONDITION WITH VOMITING AND
DIARRHEA.
IT OVERLAPS WITH OUR INTEREST
WITH WHETHER OR NOT BREATH AND
MICROBIAL PRODUCTS REFLECTIVE OF
GUT INFLAMMATION AND I THINK
THAT MIGHT BE PART OF WHAT WE'RE
SEEING IN TERMS OF THE
UNDERLYING BIOLOGY.
>>THANK YOU.
AND NOW, DR. DODGE, AN AUDIENCE
MEMBER IS POSING THIS QUESTION
TO YOU, IT CAN BE DIFFICULT TO
ENGAGE CERTAIN FAMILIES AND
COMMUNITIES IN EARLY AND
CONTINUING CARE.
HAS YOUR RESEARCH FOUND ANY BEST
PRACTICES FOR REACHING OUT TO
THESE FAMILIES AND COMMUNITIES
TO KEEP THEM COMING BACK?
THAT'S A REALLY IMPORTANT
QUESTION.
>>IT IS A VERY IMPORTANT
QUESTION AND TERRIFIC QUESTION.
WE ARE LEARNING -- WE STILL HAVE
A LONG WAY TO GO AS A DESCRIBED
ABOUT 81% OF ALL BIRTHS IN A
COMMUNITY TYPICALLY ACCEPT OUR
INVITATION TO COME INTO THEIR
HOME FOR HOME VISITS AND BEGIN
TO ENGAGE WITH US.
IN ORDER TO HAVE THAT SUCCESS OR
TO DO EVEN BETTER, WE NEED TO BE
HUMBLE IN OUR APPROACH AND NOT
COME IN AS ARROGANT EXPERTS BUT
INTERESTED NEIGHBORS WE DRY TO
UNDERSTAND OUR FAMILIES AND OUR
COMMUNITIES.
WE EMPLOY TALENTED REGISTERED
NURSES WHO ARE TRAINED TO
UNDERSTAND FAMILIES.
IT TAKES A CERTAIN TYPE OF
PERSON TO DO THAT AND TRY TO
MATCH THE CHARACTERISTICS OF OUR
NURSES WITH THE CHARACTERISTICS
OF OUR FAMILIES IN TERMS OF
GEOGRAPHICALLY WHERE THEY COME
FROM AND AGE AND ETHNICITY AS
BEST WE CAN.
THOSE ARE SOME OF THE BEST
PRACTICES.
BUT IT REALLY COMES DOWN TO A
HUMAN RELATIONSHIP WE TRY TO
CONNECT AND CREATE WITH THEM
RIGHT AWAY.
THERE'S AN AWFUL LOT MORE TO
LEARN THERE.
WE TRY TO BE COLLABORATIVE WITH
COMMUNITY AGENCIES AND
PEDIATRI
PEDIATRICIANS, MENTAL HEALTH
UNDERSTANDS AS WELL AND THEY CAN
PROVIDE A LOT OF SUPPORT FOR THE
WORK WE DO.
>>AND I'M GOING OFF SCRIPT A
LITTLE BIT HERE, DR. CHUNG YOU
MENTIONED ABOUT COMMUNITY
ENGAGEMENT WITH YOUR WORK.
HOW DO YOU KEEP THAT GOING?
>>SO AS I THINK ALL OF US IF
YOU LISTEN TO US AND WE ALL WORK
WITH OUR COMMUNITIES.
WE LEARN TOGETHER.
IT'S A COLLABORATIVE PROCESS AND
ITERATIVE PROCESS.
I DON'T THINK WE WOULD KNOW ALL
THE ANSWERS AS WE START THIS.
I LIKE THE USE OF THE TERM
HUMBLE, I THINK THAT'S EXACTLY
WHAT IT IS AND WE'RE LEARNING
TOGETHER AS WE DO THIS AND
TOGETHER WE'RE STRONGER.
I THINK OF OURSELVES -- MYSELF
AT LEAST AS ONE OF THEM AS A
PARENT AND AS A PARENT I CARE
ABOUT CHILDREN AND SHARE THE
TRAINING AND PARENTS SHARE JUST
AS MUCH AS THEIR ON THE JOB
TRAINING WITH ME AND WE ALL
DEVELOP BEST PRACTICES AND
TECHNOLOGIES CHANGE AS VIRUSES
CHANGE WE HAVE TO ADAPT AND WE
HAVE TO BE ABLE TO PIVOT AS
WE'RE DOING THIS.
I JUST THINK WE'RE ALL BASICALLY
JUST PEOPLE AND ALL TRYING TO
HELP EACH OTHER OUT.
>>YES, INDEED.
YES, INDEED.
AND BACK TO YOU, DR. CHUNG, HAVE
YOU LOOKED AT POTENTIAL USE OF
BREATH MARKERS IN PREGNANCY FOR
EARLY IDENTIFICATION OF SOME
PREGNANCY CONDITIONS?
>>WE HAVE JUST BEGUN HAVING
CONVERSATIONS ABOUT THIS.
THIS IS SOMETHING WE'RE
INTERESTED IN DOING.
OUR BACKGROUND AND INTERESTS
STARTED OUT WITH MALARIA AND
PEDIATRIC-BASED DIAGNOSTICS.
AS WE BEGIN TO UNDERSTAND THE
BIOLOGICAL ORIGIN OF THE BREATH
BIOMARKERS AND WHAT THEY CAN
TELL US ABOUT THE UNDERLYING
BIOLOGY OF A PERSON, I THINK
INVESTIGATING PREGNANCY IS
PARTICULARLY GOING TO BE
INTERESTING.
>>INDEED.
AND I HAVE A FOLLOW-UP QUESTION
FOR YOU DR. JOHN.
HAVE YOU IDENTIFIED NON POOCH
DEVICES ON PAR WITH POOCH'S
SENSITIVITY OR EFFECTIVENESS AT
DETECTING BREATH MARKERS?
>>YES, AS MUCH AS I'D LIKE TO
HAVE A DOG IN MY CLINIC IT'S
PROBABLY NOT THE LONG-TERM POINT
OF CARE DEVICE WE'RE LOOKING
FOR.
SO THERE IS ACTUALLY AN FDA
APPROVED BREATH DIAGNOSTIC
DEVICE FOR SARS COV2 ALREADY
WHICH IS A MINI MASS
SPECTROMETER AND WE'RE LOOKING
FOR A SENSOR ARRAY.
YOU CAN IMAGINE THESE AS METAL
MATERIALS THAT BIND VOLATILES
AND SO YOU BLOW OVER THEM AND
THE VOLATILES BIND TO THE SENSOR
AND CHANGE THE RESISTANCE AND
THE COMPUTER CAN TELL WHAT HAS
BEEN FOUND.
SO THOSE KIND OF TECHNOLOGIES I
THINK ARE MUCH MORE AMENABLE TO
THE POINT OF CARE USE WE
ENVISION FOR THE LONG-TERM USE
OF THIS KIND OF TECHNOLOGY.
>>WONDERFUL.
THANK YOU.
DR. DODGE, THIS NEXT QUESTION
THAT HAS COME IN IS FOR YOU.
THANK YOU SO MUCH FOR THE
SPECTACULAR WORK AND
PRESENTATION ON IMPLEMENTING
EVIDENCE-BASED SUPPORT OF YOUNG
FAMILIES.
APPRECIATING THE POWER AND
IMPACT OF HOME VISITATION AND
WONDERING ABOUT THE UNMET MENTAL
HEALTH NEEDS AND GET ADVERSE
EARLY CHILDHOOD EXPERIENCE COULD
BE PART OF A PREVENTION MODEL.
SO WHETHER UNMET MENTAL HEALTH
NEEDS SHOULD BE OR COULD BE PART
OF A PREVENTION MODEL.
>>THANK YOU, ABSOLUTELY.
THEY'RE A CORE PART OF THE
MODEL.
EVIDENCE-BASED INTERVENTIONS FOR
POSTPARTUM DEPRESSION, FOR
MATERNAL ANXIETY, FOR SUBSTANCE
ABUSE, FOR DOMESTIC VIOLENCE,
FOR SKILL DEFICITS IN PARENTING
ARE ALL IMPORTANT PART.
WHAT'S IMPORTANT TO KNOW WITH
THE SYSTEM OF CARE IS THAT IT IS
NOT AN EITHER/OR CONDITION.
IT'S NOT EITHER DOING HOME
VISITATION WITH REGISTERED
NURSES OR PROVIDING PROFESSIONAL
SERVICES IT'S BOTH.
IT'S NOT SUBSTITUTE FOR
EVIDENCE-BASED MENTAL HEALTH
INTERVENTIONS FOR PARENTS.
IN FACT, THE OPPOSITE.
IT'S MEANT TO CONNECT FAMILIES
TO THOSE RESOURCES IN THE
COMMUNITY AND IT MUST BE A PART
OF A PROCESS OF GROWING THOSE
RESOURCES.
HERE'S AN EXAMPLE, EARLY ON IN
DURHAM IN NORTH CAROLINA WHEN WE
BEGAN WE REALIZED THROUGH OUR
INTERVIEWS WITH FAMILIES 11% OF
MOTHERS POST-BIRTH REPORTED TO
US AT THAT TIME THEY HAD A
SUBSTANCE ABUSE PROBLEM FOR
WHICH THEY WERE READY TO RECEIVE
INTERVENTIONS FOR.
THEY COULD STAY IN THEIR HOMES
WITH THEIR BABY.
WE TURNED TO THE COMMUNITY
INFRASTRUCTURE AND REALIZED
COMMUNITY RESOURCES WERE ONLY --
COULD ONLY SERVE 2% OR 3% OF THE
COMMUNITY NEED.
WE'RE ABLE TO MATCH UP THIS
DISPARITY BY GOING TO THE COUNTY
COMMISSIONERS AND POINTING OUT
TO THEM THE PROBLEM AND THEY
RESPONDED WITH NOT FULLY BUT AT
LEAST A MOVE IN THE RIGHT
DIRECTION OF INCREASED FINANCIAL
RESOURCES FOR EVIDENCE-BASED
INTERVENTIONS FOR PARENTS IN
THIS MENTAL HEALTH REALM AFTER
BIRTH.
IT'S NOT AN EITHER/OR BUT BOTH
AND IT'S ABOUT GROWING THE
EVIDENCE-BASED MENTAL HEALTH
INTERVENTIONS.
>>YES, AND IT'S SORELY NEEDED
AND THANK YOU FOR POINTING THAT
OUT.
SOMETIMES WE LIKE TO THINK ABOUT
THE EITHER/OR AND IT'S AN
IMPORTANT TO RECOGNIZE WE NEED
IT BOTH/AND.
THE NEXT QUESTION IS FOR
DR. JOHN, AN AUDIENCE MEMBERS
COMMENTS, THANK YOU FOR A VERY
NICE PRESENTATION, AND INDICATES
YOU MENTIONED YOU WILL BE
EVALUATING THE GUT MICROBIOME
AND WILL YOU EXPLORE THE ORAL
MICROBIOME AND SHORT CHAIN FATTY
ACIDS.
>>GREAT QUESTION.
WE'RE INTERESTED IN ALL OF THIS.
THERE'S A SO MANY QUESTIONS.
TO ME THE KEY ABOUT
UNDERSTANDING WHETHER BREATH IS
A USEFUL LONG-TERM TOOL FOR
DIAGNOSIS HINGES ON
UNDERSTANDING THE BIOLOGICAL ORE
GIN OF A BREATH VOLATILES
UNDERSTANDING THE BREATH IN THE
FIRST PLACE AND WHY THINGS ARE
THERE FOR A CERTAIN CONDITION.
WE'RE INTERESTED IN NOT JUST THE
GUT MICROBIOTA WHICH IS WHAT WE
HAVE FUNDING TO LOOK AT BUT
INTERESTED IN OTHER ORAL SOURCES
AND ORAL MICROBIOTA IS ONE OF
THOSE AND WE'RE HOPING TO TAG ON
TO SOME EXISTING STUDIES TO BE
ABLE TO CAPTURE THAT INFORMATION
AND SHORT CHAIN FATTY ACIDS ARE
ALSO OF INTEREST.
NOT ALL WIND UP IN THE BREATH
COMPLETELY UNMODIFIED BUT
THERE'S SOME PRODUCTS WE'RE
INTERESTED IN AND WE'RE
INTERESTED AS WELL IN HOST
MITOCHONDRIA METABOLISM WE
BELIEVE IS A COMPONENT IN THE
BREATH WE'RE SEEING.
>>THANK YOU FOR THAT RESPONSE.
THIS SAY QUESTION FOR ALL OF YOU
AND I'LL ASK EACH OF TO YOU
COMMENT ON THE QUESTION AS IT
RELATES TO YOUR RESPECTED AREAS
OF RESEARCH.
AN AUDIENCE MEMBER POSES THIS
CONTEXT AND QUESTION, GIVEN THE
POWERFUL SOCIAL AND ECONOMIC
INFLUENCES ON CHILDREN'S
DEVELOPMENT THAT PUSH AGAINST
OUR BEST EVIDENCE-BASED
GUIDANCE, EAT VEN -- VEGETABLES
AND DON'T BE VIOLENT HOW CAN WE
COMMUNICATE MESSAGES THAT MAY
HAVE SOCIAL, BEHAVIORAL,
POLITICAL, ETCETERA UNDER TONES?
THIS IS ABOUT COMMUNICATING THE
SCIENCE.
HOW CAN PROVIDERS AND
RESEARCHERS EFFECTIVELY
COMMUNICATE MESSAGES AND HOW DO
WE MAKE SURE OUR RESEARCH IS
BEING DISSEMINATED AND
COMMUNICATED IN THE WAY THAT THE
INTENDED BENEFICIARIES ARE
TAKING ADVANTAGE AND CAN RECEIVE
THE MESSAGES?
WE'LL START WITH YOU, DR. CHUNG
AND THEN DR. JOHN AND THEN
DR. DODGE.
EACH OF YOU TAKE IT.
>>THIS IS COMPLICATE AND SINCE
COVID I'VE APPRECIATED HOW MUCH
MORE COMPLICATED IT IS FOR
COMMUNICATION.
WHO THE MESSENGER IS IS
IMPORTANT.
IT'S NOT JUST IS THE MESSAGE BUT
MESSENGER AND SOMEONE TRUSTED
AND FOR THAT I THINK WE NEED NOT
ONE PERSON I THINK THERE'S MANY
PEOPLE WHO CAN BE TRUSTED OR
UNDERSTOOD BY THE COMMUNITY AND
TRUSTED TO BE COMMUNICATORS.
SO WITHIN THAT I WON'T SAY
THERE'S ANY ONE PERSON OR
PROTOTYPE IN TERMS OF DOING THAT
BUT DO THINK IT STARTS WITH
SOMEONE LIKE THAT.
I THINK BEYOND THAT I THINK TOO
MANY SCIENTISTS AND PHYSICIANS
OR HEALTH CARE INDIVIDUALS GET
TOO QUICKLY SPEAKING JARGON AND
SPEAKING ABOUT THINGS AT LEVELS
THAT ARE NOT READILY
UNDERSTANDABLE AND THEY DON'T
NEED TO BE.
IT IS IMPORTANT TO BE ABLE TO
USE LANGUAGE THAT'S PLAIN
LANGUAGE AND UNDERSTOOD AND
DOESN'T SPEAK DOWN ON ANYONE BUT
SIMPLY DOESN'T USE THE TECHNICAL
LANGUAGE THAT PEOPLE HIDE
BEHIND, I THINK UNFORTUNATELY WE
GET LAZY SOMETIMES AND USE THEM
AS SHORTCUTS.
THERE'S SOME FAMOUS PEOPLE WHO
SAID IF YOU REALLY UNDERSTAND
SOMETHING YOU OUGHT TO BE ABLE
TO EXPLAIN IT TO SOMEONE IN
ELEMENTARY SCHOOL AND I THINK
THERE'S TIMES WHEN IT TAKES A
WHILE TO ABSORB SOMETHING OR LET
IT MARINATE IN YOUR HEAD AND
THINK ABOUT IT THOUGHTFULLY AND
SOMETIMES FAMILIES UNDERSTAND IT
FROM ANOTHER FAMILY IN A
PRACTICAL CONTEXT AND THEY CAN
UNDERSTAND THE VALUE OR
IMPORTANCE OF WHAT THAT MEANS
AND IT BECOMES NOT SIMPLY AN
EXTRACT SCIENTIFIC DISCOVERY BUT
BECOMES VERY APPROACHABLE, VERY
PERSONABLE AND THAT'S HAPPENED
WHEN TIMES WHEN I THINK OF JUST
PEOPLE WHO ARE VERY GENEROUS AND
SHARED THEIR STORIES WHETHER IT
BE ON SOCIAL MEDIA OR TELEVISION
SHOWS OR IN NOVELS OR OTHER
THINGS.
I THINK IN TERMS OF DOING THAT
PEOPLE CAN UNDERSTAND THE
SCIENCE IN A PERSONAL CONTEXT.
>>DR. JOHN.
>>YEAH, I THINK DR. CHUNG
RAISES SOME CRITICAL POINTS.
I THINK THE DIVERSITY OF
MESSENGERS IS VERY IMPORTANT AND
I THINK ALSO BRINGING ALL OF
YOURSELF TO THE MESSAGE I THINK
THE INTERPERSONAL MESSAGE IS
KEY.
THERE'S SOME EVIDENCE THAT
FAMILIES, ESPECIALLY FAMILIES
WHO HAVE HAD PROBLEMS WITH
MISINFORMATION OR STRUGGLING
WITH VACCINE HESITANCY REALLY
FIND THEIR PRIMARY CARE
PHYSICIAN TO BE THEIR TRUSTED
MESSENGER AND THIS IS SOMEONE WE
TRUSTED TO RECEIVE HEALTH
INFORMATION FROM AND THAT'S A
PARTICULAR RELATIONSHIP WHERE
THAT INTERACTION IS A PLACE
WHERE MISINFORMATION CAN BE MORE
READILY COMBATTED AND MY OWN
EXPERIENCE SPENDING TIME
LISTENING AS MUCH AS TALKING TO
MEET FOLKS WHO ARE VACCINE
HESITANT OR HAVING TROUBLE WITH
OTHER MEDICAL MISINFORMATION
TRYING TO UNDERSTAND THEIR
PERSPECTIVE WHERE THEY'RE COMING
FROM IN A NON-JUDGMENTAL WAY AND
UNDERSTANDING THEIR BACKGROUND
AND HOW IT'S CONTRIBUTING TO THE
DECISIONS THEY'RE MAKING WHAT
YOU MIGHT OTHERWISE RECOMMEND IS
A CRITICAL PLACE TO BEGIN TO
COUNTER ACT THOSE MESSAGE.
-- MESSAGE.
>>THANK YOU.
AND KEN.
>>I'LL GO NEXT, THANK YOU.
WHAT TERRIFIC MESSAGES FROM
DR. CHUNG AND DR. JOHN.
I'M WRITING DOWN NOTES AS I'M
LEARNING.
MAYBE I CAN ADD TWO POINTS.
ONE ABOUT THE FRAMING OF THE
MESSAGE AND ONE ABOUT THE
DELIVERY.
WE LEARNED EARLY THAT FAMILIES
PARTICULARLY MOTHERS IN THE
UNITED STATES FEEL THEY MUST DO
IT ALONE.
THEY MUST BE COMPETENT SOMEHOW
ON THEIR OWN WITHOUT COMMUNITY
SUPPORT.
WHAT WE DEVELOPED WAS A FRAMING
OF IT THAT'S A LITTLE BIT OF A
PARADOX AND THE IDEA IS WHAT WE
TRY TO COMMUNICATE TO MOTHERS IS
WE WANT THEM TO BE COMPETENT AND
THE WAY TO BE COMPETENT IS TO
LEARN HOW TO ASK FOR HELP WHEN
YOU NEED IT.
RATHER THAN DO IT ALONE.
THAT IS A MARK OF COMPETENCE
RATHER THAN WEAKNESS IF YOU CAN
UNDERSTAND WHEN YOUR FAMILY AND
WHEN YOU'RE CHILD AND WHEN YOU
NEED SUPPORT AND HELP.
WE TRY TO DELIVER THAT MESSAGE.
THE SECOND PART IS TO DO IT
TOGETHER.
THAT IS RATHER THAN US BE SOME
EXPERT THAT SAYS, HERE'S A
REFERRAL, YOU MUST GO TO THE
MENTAL HEALTH CENTER OR YOU MUST
DO X, Y OR Z, WE CO-DEVELOP A
PLAN AND TRY TO BE COLLABORATIVE
WITH THE FAMILY.
HERE ARE THE NEEDS YOU ARE
TELLING ME YOU HAVE AT THIS
TIME.
I FEEL FOR YOU, I'VE BEEN THERE,
I KNOW THAT, I UNDERSTAND THAT.
WHICH OF THESE DO YOU WANT TO
WORK ON NOW?
YOU CAN'T DO IT ALL AT ONCE.
WHAT DO YOU WANT TO DO?
OKAY, YOU WANT TO DO THAT, I'LL
GET ON THE PHONE, LET'S MAKE AN
APPOINTMENT FOR NEXT TUESDAY
AFTERNOON FOR YOU TO GO SEE THIS
MENTAL HEALTH PRACTITIONER, I
HOPE IT GOES WELL BUT I'LL CALL
YOU AT 4:00 OR EVEN DRIVE YOU
OVER THERE TO GET THERE AND IF
IT'S NOT WHAT YOU WANT WE'LL
FIGURE OUT ANOTHER SOLUTION SO
WE'LL DO IT TOGETHER TO NOT FEEL
SO MUCH ALONE.
>>ABSOLUTELY.
I THINK THAT'S A MESSAGE THAT
OFTEN I THINK WE NEED TO DO A
BETTER JOB OF COMMUNICATING
THAT'S IT'S BETTER TOGETHER THAN
TO DO ALONE.
SO I'M GOING TO ASK YOU ALL TO
COMMENT -- THIS IS THE 60th
ANNIVERSARY OF NICHD AND CLEARLY
WE HAVE DONE TREMENDOUS THINGS
OVER THE 60 YEARS AND I'M GOING
TO ASK YOU FROM YOUR OWN
PERSPECTIVES AND THE PARTICULAR
RESEARCH LENS THROUGH WHICH YOU
DO YOUR WORK WHAT DO YOU SEE ARE
OPPORTUNITIES FOR THE NEXT FIVE
OR 10 YEARS FROM YOUR SCIENTIFIC
PERSPECTIVE?
WHERE ARE SOME AREAS THAT HAVE
BEEN UNDER STUDIED THAT ARE NOW
PRIMED TO EXPLORE INQUIRY?
DR. JOHN, WE'LL START WITH YOU,
WHAT MIGHT BE SOME NEXT STEPS IN
AREAS OF RESEARCH THAT YOU'RE
WORKING ON?
>>I'M SUPER EXCITED ABOUT THE
PROMISE OF VACCINATION AND WHERE
THAT'S GOING TO GO.
IF YOU HAD TOLD ME FIVE YEARS
AGO WE'D PUT mRNA MANO
PARTICLES IN PREGNANT WOMEN FOR
A VIRUS JUST STARTED I WOULD
THINK THAT'S CRAZY AND IT'S A
REAL OPPORTUNITY FOR
INTERVENTION FOR BOTH EPIDEMIC
INFECTIOUS DISEASES AND NEW
INFECTIOUS DISEASES AND CAN WE
MAKE INROADS INTO NEONATAL HSB
AND THERE'S A NEED TO PROTECT
PEOPLE AND VACCINE AGAINST
ROUTINE CHILDHOOD ILLNESSES AND
I THINK THERE'LL BE INCREDIBLE
MOVEMENT IN THE REALM IN THE
NEXT FIVE TO 10 YEARS.
I'M HAPPY TO BE PUT OUT OF
BUSINESS.
>>THIS HAS BEEN AN EXCITING
TIME TO SEE THE PROLIFERATION OF
SCIENCE.
THINGS WE'VE BEEN WORKING ON TO
REALLY EXPLODE ON THE SCIENTIFIC
SCENE, IF YOU WILL, FOR US TO
TAKE ADVANTAGE OF AND LEARN
FROM.
YES, I'M LOOKING FORWARD TO
SEEING HOW THIS ALL UNFOLDS.
DR. CHUNG, WHAT SAY YOU?
ARE THERE OPPORTUNITIES THE NEXT
5, 10 YEARS FROM THE PERSPECTIVE
FROM WHICH YOU WORK?
>>I BRIEFLY ALLUDED THIS AT THE
END BUT NEWBORN SCREENING
STARTED OUT BY PARENTS WHO HAD
CHILDREN AFFECTED BIG NEURAL
DEVELOPMENTAL DISORDERS AND THEY
WORKED TO PREVENT THE NEXT
GENERATION FROM HAVING THE
PROBLEMS THEIR CHILDREN HAD.
AGAIN, WE'RE IN THIS TOGETHER.
I ALLUDED TO ABOUT IT BUT WITH
GENOMIC MEDICINE THERE'S
INCREDIBLE OPPORTUNITIES FOR
VERY CONDITIONS VERY TREATABLE
AND VERY PREVENTIBLE TO BE ADDED
TO SCREENING AND DO IT QUICKLY
WITH NEW TECHNOLOGIES AVAILABLE.
IT DOESN'T JUST STOP WITH THE
CURRENT THINGS WE CAN CURRENTLY
TREAT.
I ALSO OFTEN SAY I HOPE I CAN
PUT MYSELF OUT OF BUSINESS AND
RETIRE BUT THERE'S A TREMENDOUS
SUITE OF NEW TECHNOLOGIES FOR
GENETIC TECHNOLOGIES AT LEAST TO
BE ABLE TO DO THINGS THAT WILL
BE LIFE-ALTERING, TRULY
LIFE-SAVING AND LIFE-ALTERING.
IT WILL TAKE STEPS TO GO BUT I
THINK WE'LL PROGRESS IN A STEP
FUNCTION AS ENABLING
TECHNOLOGIES ALLOW US TO GET TO
THE RIGHT TIME IN LIFE, THE
RIGHT PART OF THE BODY AND IN
THE RIGHT WAY THAT'S SAFE,
THERE'S THREE KEY ISSUES THAT
EACH HAVE TO BE SOLVED BUT AS WE
CAN DO THAT, WE WILL NOW BE ABLE
TO TREAT HUNDREDS OF DISORDERS
AT A TIME WITH THOSE ENABLING
TECHNOLOGIES.
WE'RE STARTING THE PROCESS IN
TERMS OF BEING ABLE TO GET
INDIVIDUALS TO A DIAGNOSIS AND
THERE'S THINGS WE CAN DO WITH
OUR CURRENT CARE UNTIL WE GET TO
THE POINT OF A CURE AND WE WANT
TO MAKE SURE WE LEAVE NO ONE
BEHIND AND EVERY CHILD THE EQUAL
CHANCE TO A HEALTHY START TO
LIFE.
>>THAT'S EXCITING.
THAT'S A WORLD I WANT TO LIVE
IN.
LOOKING FORWARD TO SEEING THOSE
IDEAS COME TO FRUITION.
DR. DODGE, WHAT SAY YOU?
>>THANK YOU.
THESE ARE TERRIFIC IDEAS.
TWO IDEAS COME TO MY MIND ABOUT
WHAT WILL HAPPEN IN THE NEXT
FIVE TO 10 YEARS.
THE FIRST IS I BELIEVE, I HOPE,
WE LEVERAGE IN BOTH ASSESSMENT
AND DELIVERY OF INTERVENTIONS.
SO THE WORLD IS OPEN FOR
WEARABLES, APPS, REMOTE KINDS OF
ASSESSMENTS, DIAGNOSES THAT WILL
CONNECT FAMILIES TO PROFESSIONAL
RESOURCES JUST RIGHT WAY I'M
IMAGINING THE MOTHER I
INTERACTED WITH IS FRANTICALLY
WORRIED BECAUSE HER BABY HAS A
RASH AND DOESN'T KNOW WHETHER
SHE SHOULD GO TO THE EMERGENCY
ROOM OR DO TEXTING VIDEO
CONFERENCE WITH A NURSE OR HAVE
SOME KIND OF REMOTE WAY OF
IMMEDIATELY UNDERSTANDING WHAT'S
GOING ON?
THIS WILL HELP RURAL MENTAL
HEALTH CARE AS MUCH AND THE
SECOND IS IN THE DELIVERY OF
INTERVENTIONS.
WE CAN NUDGE FAMILIES WITH APPS,
DAILY TEXTS, WHATEVER KINDS OF
INTERVENTIONS.
SO MUCH WILL HAPPEN THAT WAY
THAT WILL BRING PROFESSIONALS
AND FAMILIES TOGETHER.
THE SECOND DEVELOPMENT IS WHAT
MY COLLEAGUES HAVE BEEN DOING
AND YOU'VE BEEN DESCRIBING HERE
WHICH IS USING BIG DATA AND
MACHINE LEARNING TO DEVELOP WHAT
I CALL PRE VISION PRECISION
PREVENTION.
WE CAN UNDERSTAND WHAT'S GOING
ON WITH A FAMILY, IDENTIFY RISK
EARLY AND INTERVENE EARLY BEFORE
THE PROBLEMS GROW TOO BIG.
>>YEAH, THAT'S EXCITING AND
THERE ARE SO MANY NEW
TECHNOLOGIES ON THE RISE THAT
CAN HELP US GET THERE.
AND FOLLOWING ALONG THE SAME
LINE, ONE OF THE ASPIRATIONAL
GOALS OF THE NICHD STRATEGIC
PLAN IS TO TRAIN THE NEXT
GENERATION OF SCIENTISTS AND
RESEARCHERS WHO YOU'LL BE
PASSING THE BATON ON TO AND WHO
WILL BE TAKING THE WORK THAT
YOU'VE DONE AND EXPLORING THESE
LINES OF INQUIRY AND COMING UP
WITH NEW DISCOVERIES AND NEW
IDEAS.
WHAT DO WE NEED TO DO FROM YOUR
PERSPECTIVES TO TRAIN THE NEXT
GEN ARE RATION OF RESEARCHERS IN
THE AREAS WHERE YOU CURRENTLY
ARE LEADING IN THE SCIENCE?
SO DR. DODGE, SINCE WE ENDED
WITH YOU WE'LL START WITH YOU
AND THEN DR. JOHN AND THEN
DR. CHUNG.
>>SUCH AN IMPORTANT QUESTION
AND A HOPE WE EXPAND OUR
PROFESSIONAL RESOURCE POOL BOTH
PRACTITIONERS AND SCIENTISTS AND
DIVERSIFY IT.
WE HAVE TO DIVERSIFY.
THE VISION I HAVE IN THE WORLD I
WORK IN WHICH IS COMMUNITY OF
COMMUNITY PUBLIC HEALTH
PREVENTION IS TO CREATE
SOMETHING LIKE WE HAVE IN OUR
MAJOR ACADEMIC CENTERS FOR
MEDICAL CARE.
THAT IS THOSE ARE
UNDERSTAND-BASED ACADEMIC
CENTERS ALSO PROVIDING THE BEST
CLINICAL CARE AT THE SAME TIME.
HOW CAN WE CREATE COMMUNITY
CENTERS IN MENTAL HEALTH,
PREVENTION, BEHAVIORAL HEALTH,
BEHAVIORAL CARE, FAMILY CARE
THAT ARE OUT THERE IN THE
COMMUNITY AT THE SAME TIME
DELIVERING THE BEST CLINICAL
CARE WHILE ALSO BEING THE BEST
ACADEMIC CENTERS WHERE WE'RE
LEARNING.
I DON'T HAVE A LOT OF GOOD
EXAMPLES OF THAT BUT I WOULD
HOPE WE CAN DO THAT AND THEN
THAT BECOMES A PLACE FOR
TRAINING.
TRAINING PRACTITIONERS AND
TRAINING SCIENTISTS.
>>ABSOLUTELY.
WONDERFUL VISION.
DR. JOHN.
>>YES, I'VE BEEN WATCHING LIKE
MANY HAVE THE CHALLENGES THAT
WE'VE BEEN HAVING IN THE
PEDIATRIC PHYSICIAN SCIENTISTS
WORKFORCE WITH FEWER AND FEWER
TRAINEES WANTING TO FOLLOW THE
PATH.
THERE'S A LOT OF THINGS THAT CAN
BE DONE TO SOLVE THE CRISIS I
THINK IMPROVE FUNDING AND
STABILITY IS OBVIOUSLY GOING TO
BE KEY.
ONE OF THE THINGS I SEE AS BE A
REAL POTENTIAL SUCCESS STORY ARE
THE PIPELINE PROGRAMS THAT TRY
TO GET VERY JUNIOR TRAINEES INTO
LABS OR RESEARCH SETTINGS VERY
EARLY ON.
I'D SIT ON OUR ADMISSIONS
COMMITTEE AND WHAT'S OBVIOUS IS
STUDENTS COME IN WITH AN IDEA
AND THESE ARE SOME OF THE BEST
STUDENTS AND HAVE AN IDEA OF
WHAT THEY WANT TO DO AND WHAT
THEY'RE INTERESTED IN AND MOST
TENDS TO COME FROM THEIR MENTOR
IN THEIR UNDERGRADUATE
EXPERIENCE.
I THINK THESE KIND OF PIPELINE
PROGRAMS PARTICULARLY THOSE THAT
ARE WORKING TO INCREASE THE
AMOUNT OF RACIAL AND ETHNIC
DIVERSITY WE HAVE IN OUR
WORKFORCE IS CRITICAL BECAUSE WE
HAVE A REAL CHALLENGE IN
RECRUITING AND RETAINING
PHYSICIAN SCIENTIST WHO'S LOOK
LIKE THE PATIENTS WE TREAT AND
STUDYING THE DISEASES OUR
COMMUNITIES HAVE.
I THINK THOSE ARE CRITICAL
ASPECTS IN ORDER TO IMPROVE THAT
WORKFORCE.
>>WONDERFUL, THANK YOU.
AND DR. CHUNG.
WELL, ALL THESE ARE FANTASTIC
POINTS SO I DON'T HAVE TOO MUCH
TO ADD EXCEPT WHAT I'M NOTICING
IS NUMBER ONE, SOMETHING HAS TO
DRIVE INDIVIDUAL TO DO THIS AND
OFTEN TIMES I'M SEEING A
PERSONAL MOTIVATION AND A
PASSION INDIVIDUALS HAVE FOR A
REASON SOMETIMES IT'S CURIOSITY
BUT OFTEN TIMES IT'S MOTIVATED
BY A PERSONAL COMMUNITY OR
FAMILY CIRCUMSTANCE AND THOSE
INDIVIDUALS I FIND TO BE
INCREDIBLY RESOURCEFUL, KIND,
DEDICATED INDIVIDUALS WHO REALLY
HAVE A SENSE THAT'S JUST
DIFFERENT THAN ANYONE ELSE SO I
HAVE GREAT RESPECT FOR THEM AND
THE OTHER ONE WILL SEEM LIKE
ORTHOGONAL THINGS TO TEACH BUT
DATA IS INCREASINGLY AVAILABLE
AND IMPORTANT AND MAKING
DATA-DRIVEN DECISIONS AND
LEARNING HOW TO THINK
ANALYTICALLY IS SO INCREDIBLY
IMPORTANT BECAUSE WE'LL NEED TO
CONTINUE TO LEARN HOW TO LEARN.
THE RULES ARE CHANGING VERY
RAPIDLY AND THE TOOLS AND THE
ABILITY SO WE NEED TO BE ABLE TO
CONSTANTLY ADAPT.
YET, ON THE OTHER HAND THERE
NEEDS TO BE COMPASSION AND THE
HUMANISTIC PORTION OF THINGS
WITH EMOTIONAL INTELLIGENCE AND
BEING ABLE TO CONNECT WITH
INDIVIDUALS AS PROVIDERS AND
MEMBERS OF THE COMMUNITY AND
BEING ABLE TO WRAP THAT INTO ONE
PERSON IS NOT ALWAYS EASY BUT I
FIND THOSE ARE THE MOST
EFFECTIVE PEOPLE IN COMING UP
WITH THE RIGHT QUESTIONS AND
WORK TOGETHER TO COME UP WITH
THE RIGHT ANSWER.
>>WITH THAT, WE'RE AT TIME.
I WANT TO THANK YOU ALL FOR AN
ENGAGING AND PROVOCATIVE
DISCUSSION.
THANK YOU FOR JOINING US.
>>ONE OF THE MOST LIMITING
EXACTS IS GETTING AROUND.
THE NATIONAL CENTER FOR MEDICAL
REHABILITATION RESEARCH FOCUSES
ON MOBILITY BECAUSE PART OF OUR
MISSION IS TO ADDRESS PHYSICAL
DISABILITY.
ONE OF THE EXCITING CHALLENGES
WE SUPPORT IS CALLED ZERO G
WHICH STANDS FOR ZERO GRAVITY.
>>WE CAN LITERALLY GIVE PEOPLE
A ZERO G EXPERIENCE.
I CAN MAKE A PERSON WEIGHTLESS
OR WE CAN REQUIRE THE PATIENT TO
SUPPORT THEIR FULL BODY WEIGHT.
>>WHAT THE ZERO G SYSTEM DOES
IS ALLOW SOMEBODY TO MOVE
NORMALLY AND NATURALLY AND TASTE
THEIR BALANCE AND TEST THEIR
ABILITY TO WALK.
>>A PATIENT WHO HAS HAD A
STROKE IS THINKING WHAT IS LIFE
GOING TO BE LIKE.
I'M IN THIS BED, I CAN HARDLY
MOVE BUT WHEN YOU ATTACH THEM TO
ZERO G AND IT HELPS THEM STAND
UP FOR THE FIRST TIME AND TAKE
THE FIRST STEP AND SAY IT WAS
HARD BUT I FEEL LIKE I'M ON THE
ROAD TO RECOVERY.
THEY'RE PRACTICING EVERY DAY AT
HIGH INTENSITY LEVEL AND BECAUSE
WHEN YOU'RE IN ZERO G YOU DON'T
HAVE TO WORRY ABOUT FALLING AND
THEY CAN PUSH THEIR LIMITS.
WHEN THEY GET DISCHARGED AND GET
HOME AND SEE A SET OF STAIRS AND
SAY I GOT THIS.
I PRACTICED SO MANY TIMES.
>>THE RESEARCH WE SUPPORT THAT
IS BEING DONE BY CONNOR WALSH
ALLOWS US TO DO THE FOUNDATIONAL
SCIENCE TO HELP US UNDERSTAND
HOW THE SUIT IS GOING TO BEHAVE
WITH A PERSON WHO HAS A STROKE.
>>OUR TEAM AT HARVARD AND
BOSTON UNIVERSITY ARE STUDYING
THE BIO MECHANICS AND PHYSIOLOGY
OF HUMAN WALKING AND UNDERSTAND
HOW IT'S EFFICIENT AND HOW TO
HELP SOMEONE WALK.
>>AND IT'S MORE NATURAL GAIT
FOR THE LEG.
IT'S EASIER TO PUT ON AND BE
USED IN THE COMMUNITY.
>>WE'RE EXCITED TO PROVIDE A
UNIQUE TOOL THAT CAN ENABLE A
NEW PARADIGM IN REHABILITATION
THAT EXTENDS FROM THE CLINIC TO
THE COMMUNITY.
>>YOU HAVE CARS THAT DRIVE
THEMSELVES AND IT'S INEXCUSABLE
WE CANNOT HAVE A TECHNOLOGY THAT
CAN GIVE THESE PATIENT THE
OPPORTUNITY TO MAKE JUST A FULL
RECOVERY.
>>THOSE THE TYPES OF
ADAPTATIONS AND NOVEL RESEARCH
WE CAN FUND TO HELP PEOPLE'S
DAY-TO-DAY MOBILITY.
>>WE QUICK OFF THE AFTERNOON
WITH OUR NEXT SESSION, ENSURING
HEALTHY AND OPTIMAL LIVES,
MODERATE DR. THERESA HAYES CREWS
THE DIRECTOR OF NICHD'S NATIONAL
CENTER FOR MEDICAL
REHABILITATION RESEARCH.
>>WELCOME BACK FROM THE BREAK,
EVERYONE.
I'M THERESA CRUZ AND I WILL
MODERATE THE SESSION ON
IMPROVING THE QUALITY OF LIVES
AND FUNCTION OF PEOPLE WITH
DISABILITIES.
PLEASE SUBMIT YOUR QUESTIONS FOR
THIS SESSION'S SPEAKERS TO
NICHDPRESS ONE WORD AT
MAIL.NIH.GOV.
AND WE WILL HAVE A QUESTION AND
ANSWER SESSION AT THE END.
SO NOW IT'S MY LOW PRESSURE TO
HAVE A CONVERSATION WITH JUDY
HEUMANN.
SHE'S A LIFE LONG ADVOCATE FOR
THE RIGHTS OF PEOPLE WITH
DISABILITIES OR DISABLES PEOPLE.
WE'LL USE BOTH TERMS IN THIS
SESSION.
SHE WAS INSTRUMENTAL IN IN THE
DEVELOPMENT AND IMPLEMENTATION
OF LEGISLATION TO PROTECT THE
CIVIL RIGHTS OF PEOPLE WITH
DISABILITIES SUCH AS THE
AMERICANS WITH DISABILITIES ACT
AND THE REHABILITATION ACT AND
SERVED IN THE CLINTON AND OBAMA
ADMINISTRATIONS.
JUDY IS AN ACCOMPLISHED AUTHOR
AND I WOULD ENCOURAGE YOU TO
CHECK OUT HER BOOK, BEING HUMAN
WHICH WAS PUBLISHED IN 2020 AND
HER CONNECTION TO NICHD IS
THROUGH THE NATIONAL CENTER FOR
MEDICAL REHABILITATION RESEARCH
WHERE SHE SERVED ON OUR
INAUGURAL ADVISORY BOARD.
AND RATHER THAN HAVING A
TRADITIONAL TALK, JUDY AND I ARE
GOING HAVE A FIRESIDE CHAT.
PLEASE WELCOME JUDY TO THE STAGE
WITH ME.
>>GREAT TO BE WITH YOU,
THERESA, THANK YOU.
>>THANK YOU.
I'M A LONG-TIME ADMIRER MUCH
YOUR ADVOCACY AND LEGISLATION
WORK ON ACCESSIBILITY AND THE
INCLUSION OF PEOPLE WITH
DISABILITIES IN ALL ASPECTS OF
SOCIETY.
CAN YOU TELL THE AUDIENCE WHO
MAY NOT BE FAMILIAR WITH YOUR
STORY, A LITTLE BIT ABOUT
YOURSELF AND THE IMPETUS FOR
YOUR ADVOCACY WORK.
>>YEAH, THANK YOU.
SO I'LL ALSO GIVE A VISUAL
DESCRIPTION OF MYSELF.
I'M A 74 IN DECEMBER, DISABLED
WOMAN.
I WAS BORN IN 1947 AND HAD POLIO
IN 1949.
I'M IN THE APARTMENT OF MY
HUSBAND AND MYSELF AND ALSO OUR
OFFICE AND I AM BROWN HAIR,
SHOULDER LENGTH, RED GLASS AND
HAVE ON A BLUE BLOUSE WITH SOME
FISH ON THEM AND PHOTOS OF
FAMILY AND FRIENDS AND PLANT IN
THE BACKGROUND.
SO MY LIFE I THINK WAS VERY
TYPICAL OF DISABLED PEOPLE IN
THE UNITED STATES BORN IN THE
LATE '40s AND '50s, WE HAD NO
LAWS AT THAT TIME WITH THE
RIGHTS OF DISABLED PEOPLE.
NICHD CAME ABOUT WHEN PRESIDENT
KENNEDY WAS PRESIDENT, I BELIEVE
IN 1962 OR 1963.
AT THAT POINT WHEN THE CIVIL
RIGHTS ACT WAS PASSED IN '64,
DISABILITY WAS NOT A PART OF
THAT LAW AND I THINK MUCH OF THE
WORK THAT NICHD AND OTHER
AGENCIES ARE DOING WOULD NOT
HAVE THE BENEFIT THAT IT HAS IF
IN FACT LAWS PROHIBITING
DISCRIMINATION IN EDUCATION, FOR
EXAMPLE, HAD PASSED.
SO WHEN MY MOTHER TOOK ME TO
SCHOOL IN THE 1950s, I HAD
NEUROCOGNITIVE AND PHYSICAL
DISABILITY AND PULLED MY
WHEELCHAIR UP THE STEPS AND THE
PRINCIPAL SAID I WOULDN'T GO TO
THE SCHOOL BECAUSE WAS A FIRE
HAZARD.
THIS WAS NOT AN UNUSUAL
SITUATION.
I LIVED IN BROOKLYN AND THE
BOARD OF EDUCATION AT THAT TIME
PROVIDED A TEACHER TWICE A WEEK
FOR A TOTAL OF TWO AND A HALF
HOURS AI WEEK.
SO AND I JOKE THAT FOR GOOD
BEHAVIOR THEY THREW IN AN
OCCUPATIONAL THERAPIST WHO
TAUGHT ME NEEDLE POINT.
THERE WAS NOT A PRESUMPTION
DISABLED INDIVIDUALS,
PARTICULARLY THOSE OF US WITH
CERTAIN TYPES OF DISABILITIES
THE ABILITY TO WALK UP AND DOWN
STORES AND AN INTELLECTUAL
DISABILITY, CEREBRAL PALSY,
OTHER DISABILITIES WHERE ONE'S
INABILITY TO BE ABLE TO AMBULATE
WOULD RESULT YOU NOT GOING TO
SCHOOL AND IF YOU WERE LUCKY
GETTING HOME INSTRUCTION.
MY PARENTS BECAME ADVOCATES LIKE
MOST PARENTS THEY WEREN'T
ADVOCATES BEFORE CERTAINLY IN
THE AREA OF DISABILITY BUT THEY
LEARNED AND OVER THE YEARS WHAT
WE HAVE SEEN IS THE COMING
TOGETHER OF MANY DIFFERENT TYPES
OF GROUPS IN THE AREA OF MENTAL
DISABILITIES, CLEARLY, AND
GROUPS LIKE CEREBRAL PALSY AND
ARC AND OTHERS STARTING IN THE
'40s AND '50s AND AGAIN THE ROLE
OF PARENTS BEGIN TO FIGHT FOR
THEIR CHILDREN AND AS THEIR KIDS
WERE GROWING UP BECAUSE IT WAS A
WHOLE OTHER ISSUE WHEN I STARTED
GOING TO SCHOOL IN THE FOURTH
GRADE I JOKE I WAS THE FIRST TO
INTEGRATE THE CLASSES WITH
CEREBRAL PALSY AND MY LATE
FRIEND WAS THE FIRST TO
INTEGRATE INTO A KIDS WITH
CEREBRAL PALSY.
AT THAT POINT IT WAS 9 BUT KIDS
WOULD STAY IN SCHOOL UNTIL THEY
WERE 21 IF THEY HAD C.P. AND
THEN GO TO WORKSHOP.
SO ANY OF YOU DOING WORK IN THIS
AREA, WHETHER YOU'RE FOCUSSING
ON PARTICULAR THINGS LIKE
WALKING LIKE WE JUST SAW, IT'S
IMPORTANT TO UNDERSTAND THE
HISTORICAL CHANGES THAT HAVE
GONE ON DURING THE COURSE OF THE
LIFE OF NICHD, 60 YEARS.
MANY REALLY IMPORTANT THINGS
HAVE HAPPENED.
BUT I THINK AND WE'LL GET INTO
THIS IN DISCUSSION, IT'S
IMPORTANT TO SEE THOUGH WE'VE
HAD INDIVIDUALS WITH
DISABILITIES EDUCATION ACTION,
SECTION 504 AND OTHER LAWS WITH
DEVELOPMENT DISABILITY AND
SOCIAL SECURITY, ETCETERA, WE
STILL DON'T SEE THE LEVEL OF
QUALITY AND INCLUSION OF
DISABLED INDIVIDUALS.
>>AND THERE'S REHABILITATION
AND ASSISTIVE TECHNOLOGIES.
DON'T THINK EVERYONE APPRECIATED
HOW CRUCIAL A.T. CAN BE.
CAN YOU TALK A LITTLE BIT HOW
YOU USED ASSISTIVE TECHNOLOGIES
AND THEIR ROLE IN YOUR LIFE?
>>YES, AND TO START BY SAYING
MANY PEOPLE DON'T EVEN KNOW WHAT
A.T. MEANS.
SO WHEN YOU'RE WORKING WITH A
FAMILY AND A CHILD OR SOMEONE
NEWLY DISABLED FROM A STROKE OR
WHATEVER IT MAY BE, THE WORD
ASSISTIVE TECHNOLOGY IS REALLY A
REHAB WORD OR IN THE FIELD OF
DISABILITY BUT I THINK IT'S A
GOOD QUESTION BECAUSE ASSISTIVE
TECHNOLOGY IS AS IT SOUNDS IS
SOMETHING THAT SHOULD ENABLE
YOU, CAN INVERT THE WORD
UNIVERSAL DESIGN BECAUSE WHEN WE
LOOK AT THINGS LIKE A SINK
THAT'S TOO HIGH.
SO SOMEONE IN A WHEELCHAIR CAN'T
WASH THEIR DISHES BUT IF YOU
LOWER THE SINK, YOU COULD WASH
YOUR DISHES OR IF THE CABINET IS
LOWER YOU COULD PUT THINGS AWAY.
THAT COULD BE FOR SOMEONE OF
SHORT STATURE AND COULD BE ANY
NUMBER OF PEOPLE WHO ARE NOT
TALL ENOUGH OR TOO TALL TO DO
CERTAIN THINGS.
FOR ME, ASSISTIVE TECHNOLOGY
COVERS MY ENTIRE LIFE.
I HAD POLIO AS I MENTIONED, I'M
A QUADRIPLEGIC AND DON'T WALK OR
STAND AND HAVE LIMITED USE OF MY
HANDS AND ARMS AND USE MOTORIZED
WHEELCHAIR AND HAVE PERSONAL
ASS
ASSISTANTS I NEED HELP GETTING
UP, DRESSED, SHOWERED, ALL THOSE
THINGS.
FREQUENTLY WHAT IS NOT HAPPENING
IS LOOKING AT A CONTINUUM OF
SOMEBODY'S NEEDS.
SO FOR ME, THE ASSISTIVE
TECHNOLOGY, IE A WHEELCHAIR NOT
SUFFICIENT BECAUSE I NEED TO GET
IN AND OUT OF BED, OFF THE
TOILET, SINKS HAVE TO BE CERTAIN
HEIGHTS.
I WAS TALKING TO THERESA ABOUT
THIS EARLIER BECAUSE I USE
PERSONAL ASSISTANTS I HAVE
PEOPLE SHORT AND TALL TO HELP ME
BUT YOU CAN'T GET OUT OF A BED
READILY THAT GOES UP AND DOWN.
HAVE BEDS SOLD EVERYWHERE WHERE
THEY SIT UP AND DOWN AND FEET
ELEVATE AND GO DOWN BUT I HAVE
NO IDEA WHY THERE IS NOT A
COMMON FEATURE WHERE BEDS CAN GO
UP AND DOWN.
WALK AROUND PLACES OR ROLL
AROUND PLACES AND HONESTLY, WHEN
I SEE VERY TALL PEOPLE, I REALLY
START WORRYING.
I DON'T KNOW THESE PEOPLE.
WHAT AM I WORRYING ABOUT?
I'M WORRYING WHEN THEY GET OLDER
IT'S GOING TO BE MORE DIFFICULT
FOR THEM TO GET IN AND OUT OF
BET AND MORE DIFFICULT TO GET
OFF A CHAIR.
AND THINGS THAT HAVE BEEN DONE
FOR CHAIRS BUT NOT FOR BED.
AND SOME WORK NICHD DOES AND
OTHERS LIKE NIDELER, BEING ABLE
TO GET SOME SIMPLE THINGS LIKE
BEDS SOLD OVER THE MARKET THAT
ALLOW THE BED TO GO UP AND DOWN
WOULD BE SO HELPFUL FOR SO MANY
PEOPLE AND ACTUALLY FROM A
UNIVERSAL DESIGN PERSPECTIVE
WHAT YOU WOULD LIKE IN THE NEXT
10, 20 YEARS IS JUST LIKE PEOPLE
EXPECT TO BE ABLE TO GO INTO A
STORE AND BUY A BED WHERE THE
BACK ELEVATES, ETCETERA, THEY
SHOULD BE ABLE TO EXPECT THE BED
WILL GO UP AND DOWN.
BUT ASSISTIVE IN OUR COMPUTERS
AND SOFTWARE AND MAKING SURE
THINGS ARE BEING DESIGNED
ACCESSIBLY FROM THE BEGINNING
THE MORE WE CAN GET AWAY FROM
THINGS SO SPECIALIZED THE BETTER
WE ARE.
I HAVE UNIQUE NEEDS.
IT'S REALLY IMPORTANT ALSO WHEN
WE LOOK AT ASSISTIVE TECHNOLOGY
THAT WE'RE LOOKING AT THE PEOPLE
NOT JUST DESIGNING BUT THE
PEOPLE DOING REPAIR.
AND PEOPLE ARE ORDERING
TECHNOLOGY BECAUSE YOU REALLY
NEED TO BE ABLE TO UNDERSTAND
THE PERSON YOU'RE WORKING WITH.
AND I WANT TO SAY THAT ONE THING
ABOUT THE WAY WE GETS TECHNOLOGY
THERE'S A PRESUMPTION YOU THE
WHAT YOU NEED AND IN SOME CASES
WE DON'T.
IN PART IF THE TECHNOLOGY IS
REALLY OPENING NEW OPPORTUNITIES
WE DON'T KNOW WHAT TO ASK FOR OR
DON'T KNOW TOTALITY OF WHAT TO
DISCUSS.
THINGS LIKE MYSELF AND OTHER
PEOPLE I KNOW WHO HAD VANS.
WE'VE BEEN GETTING WHEELCHAIRS
WHERE NO ONE ASKED THERE WE USED
ANY TRANSPORTATION.
SO NO ONE WAS MEASURING HOW TALL
WE WERE FROM THE GROUND TO THE
TOP OF OUR HEAD AND I HAD A
FRIEND TO HAD TO GET RID OF THE
VEHICLE BECAUSE AFTER THEY
CHANGED HIS WHEELCHAIR HE
COULDN'T GET IN AND OUT OF HIS
VEHICLE.
WHEN LOOKING AT ASSISTIVE
TECHNOLOGY IT'S IMPORTANT WE
LOOK AT IT AS SOMETHING WHICH
REALLY WILL ENABLE SOME PEOPLE
TO EITHER RE-ENTER A WORLD THEY
WERE IN BEFORE AND YOU CLEARLY
SAW THAT IN THE THINKING ABOUT
THE WALKING TECHNOLOGY BEING
USED AND TRAINING PEOPLE TO DO
THINGS THEY WERE DO BEFORE BUT
IN MANY CASES PEOPLE WERE NOT
DOING THESE THINGS BEFORE.
LIKE MYSELF BORN WITH DISABILITY
AND ASSISTIVE TECHNOLOGY IS
CRITICAL AND NEED TO LOOK AT IT
WAY BEYOND THE TOOL ITSELF AND
HOW TO ENSURE THE TOOLS BEING
DESIGNED ARE ABLE TO BE AS
FLEXIBLE AS POSSIBLE, BENEFIT
PEOPLE AND LOOK AT THE TOTALITY
OF THE PERSON'S LIFE.
>>THANK YOU.
THAT'S A GOOD PERSPECTIVE ON
WHAT DESIGNERS NEED TO THINK
ABOUT WHEN THEY'RE INTERACTING
WITH THEIR CLIENTS.
>>AND PEOPLE BEING TRAINED.
YOU HAVE THE DESIGNERS THAT MAKE
THE PRODUCT BUT ALL TOO
FREQUENTLY THE PEOPLE THAT ARE
DOING THE ORDERING DON'T HAVE
TRE SAME TRAINING AND -- THE
SAME TRAINING AND IT'S EQUALLY
IMPORTANT THE O.T.s, P.T.s,
SPEECH THERAPIST AND THE
FAMILIES AND INDIVIDUAL USER GET
A BETTER UNDERSTANDING FROM THE
VERY BEGINNING WHEN LOOKING AT
A.T.
AND IT SHOULD BE LIKE AN
INTRODUCTORY VIDEO WHICH ALLOWS
PEOPLE TO START THINKING ABOUT
WHAT DO YOU WANT TO DO IN YOUR
LIFE AND WHAT WERE YOU DOING IN
YOUR LIFE AND HOW CAN THE
TECHNOLOGY WE HAVE NOW BUT IT'S
ALSO THINKING ABOUT THE
TECHNOLOGY FOR THE FUTURE.
>>SO YOU HAVE BEEN FEATURED IN
A DOCUMENTARY ABOUT THE
DISABILITY RIGHTS MOVEMENT ON
NETFLIX CALLED KIRK CAMP AND
EXECUTIVE PRODUCED BY PRESIDENT
OBAMA AND PORTRAYED BY AN A TONY
AWARD WINNING ACTOR WHO ALSO
USES A WHEELCHAIR FOR MOBILITY
AND THAT WAS ON A TELEVISION
SHOW ABOUT CIVIL RIGHTS.
HOW DO YOU THINK --
>>JUNK HISTORY.
>>I WASN'T GOING TO SAY THE
NAME.
HOW DO YOU THINK THESE NEW MEDIA
REPRESENTATIONS WILL IMPACT THE
REPRESENTATION OF PEOPLE WITH
DISABILITIES?
OPPOSED TO THE WAY TRADITIONALLY
THEY'VE BEEN SHOWN?
>>THE WHOLE ISSUE OF
REPRESENTATION IS SO VERY
IMPORTANT.
AND IT'S SOMETHING THAT WE NEED
TO DO MEANINGFUL RESEARCH ON
PARTICULARLY ON THE AREA OF
DISABILITY.
I THINK THERE'S APPROPRIATE
PRESUMPTION AND WHICH IS THAT
WHEN ONE DOESN'T SEE ONE'S SELF
THAT IS GIVING A PROFOUND
MESSAGE, THE ABSENCE OF.
WHEN WE LOOK AT PEOPLE OF COLOR,
BLACK PEOPLE, LATINOS, ASIANS,
PEOPLE WITH DIFFERENT GENDER
ORIENTATIONS, DIFFERENT
RELIGIOUS BACKGROUNDS, IN MY
LIFE TIME THERE'S BEEN DRAMATIC
CHANGES IN TELEVISION, IN
DOCUMENTARIES, ON THE NEWS, IN
MOVIES, IN NEWSPAPERS.
MUCH MORE CONSCIOUSNESS ABOUT
THIS BUT YOU STILL ARE
INFREQUENTLY SEEING DISABLED
PEOPLE WITH MANY FORMS OF
DISABILITIES WHO ARE WHITE OR
BLACK OR ASIAN OR LATINO OR GAY
OR STRAIGHT OR WHATEVER IT MAY
BE.
IT'S NOT THAT WE'RE NOT SEEING
IT AT ALL AND I CAN TELL YOU
WHEN I'M WATCHING TV I PICK UP
IMMEDIATELY WHEN I SEE SOMETHING
AND ADVERTISEMENTS NOW ARE
SEEING A NUMBER OF PLACES LATELY
WHERE IF YOU KNOW THAT PERSON IS
IN A WHEELCHAIR BECAUSE I USE A
WHEELCHAIR AND I KNOW WHAT IT
LOOKS LIKE, YOU MAY SEE A COUPLE
PEOPLE IN A BANK AD OR SOME
OTHER THINGS BUT LIKE QUICKLY.
DISABLED PEOPLE ARE NOT GIVEN
THE SAME LENGTH OF TIME
FREQUENTLY EVEN WHEN WE ARE
BEING SHOWN IN THINGS LIKE ADS.
I WANT TO REALLY UNDER SCORE THE
FACT THAT IT IS OUR
RESPONSIBILITY WORKING IN THE
FIELD OF REHAB OR DISABILITY IN
GENERAL THAT WE BE MUCH MORE
DAMNING OF REPRESENTATION OF
DISABLED PEOPLE BY DISABLED
PEOPLE AND WE RECOGNIZE THE
IMPORTANCE OF THE DIVERSITY.
AND WHILE I DON'T WORK IN
GOVERNMENT ANY MORE I STRONGLY
BELIEVE WE NEED TO BE MORE
PERSISTENT AND CONSISTENT ON
MAKING SURE THAT WHEN WE LOOK AT
ISSUES LIKE ASSISTIVE TECHNOLOGY
THAT PEOPLE ARE WE USE ASSISTIVE
TECHNOLOGY ARE BEING SEEN.
AND MORE BROAD REPRESENTATION.
COMMUNICATION TECHNOLOGY IS
ANOTHER REALLY IMPORTANT AREA
THAT'S BEEN EMERGING OVER THE
LAST FEW DECADES AND BLIND
PEOPLE AND PEOPLE WHO AREN'T
ABLE TO TYPICALLY ARTICULATE AND
I THINK ONE OF THE REASONS WHY
IT'S SO VERY IMPORTANT THAT WE
ARE NOT ONLY SEEING OURSELVES
BUT IT'S AS IMPORTANT AS THE NON
DISABLED COMMUNITY OR PEOPLE
WITH INVISIBLE DISABILITIES AS
WE ALL KNOW THE MAJORITY OF
PEOPLE WHO HAVE INVISIBLE
DISABILITIES.
YOU CAN'T SHOW SOMEONE LIKE WHO
HAS DEPRESSION OR CANCER BUT YOU
DO NEED TO BE ABLE TO MAKE SURE
IN THE DIALOGUES AND
REPRESENTATION WE'RE TALKING
WITH THIS.
THE REASON WHY I THINK IT'S
IMPORTANT IS WE NEED TO BE
NORMALIZING ALL THESE THINGS.
WE NEED TO NORMALIZE SOME
TECHNOLOGIES AND THE MAN RUNNING
FOR A SENATE SEAT WHO HAD A
STROKE AND IS USING CAPTIONING
AND THE FACT THAT THEY'RE
DISCUSSING WHETHER OR NOT HE'S
CAPABLE OF BEING A SENATOR
BECAUSE HE'S CAPTIONING, THAT'S
IN MY VIEW IS THE RESULT OF THE
FACT THAT WE DON'T DISCUSS THE
ISSUE OF WHAT IS CAPTIONING AND
WHAT IT HAS BENEFIT AND NOW WE
HAVE CAPTION IN MANY PLACES.
PEOPLE FREQUENTLY DON'T TURN IT
ON BUT I THINK IF PEOPLE
UNDERSTOOD THE VALUE OF
CAPTIONING, I TURN CAPTIONING ON
SO OFTEN BECAUSE I MAY NOT
UNDERSTAND SOMEBODY.
THE MICROPHONE -- THEY MAY HAVE
AN ACCENT WHATEVER IT MAY BE BUT
IF CAPTIONING WAS NORMALIZED ONE
WOULD NOT QUESTION ONE'S NEED TO
USE CAPTIONING.
>>THANK YOU, I'M A BIG FAN OF
CAPTIONING FOR MY BBC WATCHING,
I NEED IT.
>>GREAT EXAMPLE.
>>I THINK WE'RE OUT OF TIME.
BUT I WANT THE TO JUST SAY THANK
YOU SO MUCH.
IT'S HANDS DOWN THE HIGHLIGHT OF
MY WEEK.
THANK YOU SO MUCH TAKING THE
TIME TO TALK WITH ME TODAY AND
WE'LL SEE YOU AT THE END FOR
Q&A.
THANK YOU.
>>THANK YOU FOR INVITING ME.
IT'S GREAT.
>>OUR NEXT SPEAKER IS CLAIRE LE
PICHON.
SHE IS AN INVESTIGATOR IN THE
DIVISION OF INTRAMURAL RESEARCH
AND BEGAN IN 2016 AND SHE
STUDIES THE CELLULAR MECHANISMS
UNDERLYING THE ONSET AND
PROGRESSION OF NEURODEGENERATIVE
DISEASE.
EXCUSE MY, I SHOULD HAVE SAID
INTRAMURAL AT NICHD.
ONE OF OUR OWN.
SHE WORKED AT A CUP MAY HAVE
HEARD OF, GENNENTECH AND WORKED
ON THE PRECLINICAL DRUG
DEVELOPMENT FOR MULTIPLE
NEURODEGENERATIVE DISEASE
PIPELINES USING A MOUSE MODEL OF
THE DISEASE.
SHE EARNED HER B.A. DEGREE FROM
CAMBRIDGE UNIVERSITY, U.K. AND
EARNED HER Ph.D. IN BIOLOGICAL
SCIENCES FROM COLUMBIA
UNIVERSITY.
WITHOUT FURTHER DELAY, I WILL
TURN THE FLOOR OVER TO CLAIRE.
THANK YOU.
>>THANK YOU, TERESA.
I'D LIKE TO SHARE THE WORK WE DO
IN MY LAB AND HIGHLIGHT AND
HOPEFULLY I'LL CONVINCE YOU IS
THAT THE TYPE OF BASIC RESEARCH
THAT WE DO IS REALLY IMPORTANT.
SO WE'RE VERY INTERESTED IN HOW
NEURONS RESPOND TO INJURY AND I
THINK THIS WORK CAN HELP US
BETTER UNDERSTAND THE PHYSIOLOGY
OF NEURODEGENERATION DISEASE
WHETHER IT'S DISEASE OR
ENVIRONMENTALLY CAUSED.
WE MODEL NEURODEGENERATION
USING MICE AND DO VARIOUS FORMS
AND STUDY TRAUMATIC INJURY TO
THE BRAIN AND THE SPINAL CORD
AND WE'RE INTERESTED IN
UNDERSTANDING WHAT HAPPENS AT
THE CELLULAR LEVEL.
AND RECENTLY, I'LL SHARE THIS
TOWARDS THE END OF MY TALK, WE
HAVE STARTED STUDYING HUMAN
NEURONS IN A DISH USING IPSC
TECHNOLOGY.
I'LL BRIEFLY INTRODUCE ONE OF
THE SIGNALLING PATHWAYS WE WORK
ON.
AND SHARE VIGNETTES OF WORK
WE'VE DONE AT NICHD.
IN SIMPLE TERMS,
NEURODEGENERATION CAN BE CAUSED
BY ENVIRONMENTAL FACTORS IN THE
DEVELOPMENT AND LIFE SPAN.
IN MY LAB WE STUDY DOWN STREAM
PATHWAYS THAT ARE COMMON TO MANY
DIFFERENT SCENARIOS IN WHICH ONE
CAN OBSERVE NEURODEGENERATION
AND WE'RE INTERESTED IN
MODELLING THIS IN MICE AND ALSO
UNDERSTANDING WHETHER WHAT WE
LEARNED FROM THE MICE TRUE IN
HUMAN NEURONS.
WE'RE INTERESTED IN TYPES AND
INTERESTED IN THE DOWN STREAM
MECHANISMS AND I'LL TELL YOU
ABOUT ONE OF THESE TODAY.
AND THIS IS WORK THAT I STARTED
THINKING ABOUT AT GENENTECH
BECAUSE WE WERE TRYING TO
DEVELOP DRUGS TO TREAT
NEURODEGENERATION AND ONE WAY IS
TO TARGET A DOWN STREAM PATHWAY
WHERE YOU DON'T HAVE TO
UNDERSTAND ALL THE DIFFERENT
CAUSES THAT LED TO THE
NEURODEGENERATION AND THE
EXAMPLE IS USING KINASE.
SO DUAL LEUCINE ZIPPER KINASE IS
ESSENTIAL FOR PROPER DEVELOPMENT
WITHIN AN ORGANISM.
I'M SHOWING AN EXAMPLE WHERE THE
APPROPRIATE NUMBER OF NEURONS IN
A MATURE ORGANISM IS DETERMINED
ACT
ACTUALLY BY AN OVERPRODUCTION OF
NEURONS AND A WAVE OF CELL DEATH
OF THE EXTRA NEURONS THAT DIDN'T
MAKE APPROPRIATE CONNECTIONS AND
THIS IS ESSENTIAL FOR THAT
NORMAL HEALTHY DEVELOPMENTAL
PROCESS.
WE WONDERED WHETHER IT CAN BE
ACTIVATED AGAIN IN THE CONTEXT
OF DISEASE.
THIS IS WORK I DID AT GENENTECH
WHERE WE LOOKED AT A MOUSE MODEL
OF DEGENERATION.
IT TURNS OUT THERE ARE LINKS
BETWEEN PATHWAYS THAT CONTROL
PROPER NEURONAL DEVELOPMENT AND
ALSO DEGENERATION LATER IN LIFE.
AND ONE OF THE BEST WAYS TO
STUDY THIS IN A CONTROLS WAY IS
TO INJURY THE AXON.
SO WITH NERVE INJURY THAT'S A
GOOD WAY OF ACTIVATING THIS
PATHWAY AND I'M GOING TO
SUMMARIZE A LOT OF WORK THAT HAS
BEEN DONE OVER THE PAST COUPLE
DECADE IN MANY MODEL ORGANISMS
AND ESSENTIALLY THE DUAL LEUCINE
KINASE DRIVES THE PATHWAY WHERE
YOU GET PHOSPHORYLATION OF DROWN
STREAM PATHWAYS AND SENDS A
SIGNAL TO THE CELL BODY.
SOMETIMES THE AXON INJURY IS FAR
FROM THE CELL BODY.
THIS IS A KIND OF RETRO GRADE
SIGNALLING.
GET THE AXON INJURY AND THE
RETRO GRADE SIGNALLING TELLS THE
NEURON THAT THIS INJURY HAS
HAPPENED SOMETIMES VERY FAR AWAY
AND THE CELL IS ABLE TO TURN ON
DIFFERENT GENES THAT ALLOW IT TO
RESPOND TO THE INJURY.
AND THIS ACTUALLY ALLOWS THE
NEURON TO DO MANY THINGS IN
RESPONSE TO THIS INJURY.
SO THE AXON CAN DEGENERATE AND
LOTS OF OTHER PLAYERS ARE
INVOLVED IN THAT PROCESS AND THE
AXON CAN SOMETIMES REGENERATE.
THAT'S REALLY IMPORTANT IN TERMS
OF BEING ABLE TO REPAIR AND
PROTECT THE NERVOUS SYSTEM BUT
THIS PATHWAY CAN ALSO DRIVE
NEURONAL DEATH AS WELL AS
SURVIVAL AND THE EXACT OUTCOME
DEPENDS ON THE CONTEXT AND THAT
CAN BE DIFFERENT NEURON TYPES, A
DIFFERENT ORGANISM, WHERE THE
NEURON IS WHETHER IT'S IN THE
BRAIN OR IN THE PERIPHERAL
NERVOUS SYSTEM.
ONE OF THE THINGS MY LAB
DISCOVERED IS THAT THIS PATHWAY
CAN ALSO SIGNAL TO THE OUTSIDE
OF THE CELL.
ALL THE THINGS I DESCRIBED THE
REPAIR AND DEGENERATION ARE
INTRINSIC TO THE CELL THAT WAS
INJURED.
WE DISCOVERED THE PATHWAY CAN
ALSO LEAD TO NEURAL INFLAMMATION
BY TALKING TO THE CELLS ON THE
OUTSIDE AND THIS IS WORK DONE BY
THIS GREAT TEAM IN MY LAB.
A GREAT NEUROANATOMY LESSON.
THIS IS A DIAGRAM OF THE SPINAL
COLUMN AND YOU CAN SEE THERE ARE
THESE DRGs OR DORSAL ROOT
GANGLIA THAT LINE THE SPINAL
CORD AND THOSE ARE DRGs SENSORY
NEURONS EXTEND ONE INTO THE
DORSAL END AND THE OTHER END
CONNECTS TO THE PERIPHERY LIKE
THE SKIN.
IN ORANGE YOU CAN SEE THE MOTOR
NEURONS.
THOSE RESIDE IN THE SEN VENTRAL
OF THE SPINAL CORD AND ALLOW
MOVEMENT AND PROJECT OUT OF THE
SPINAL CORD AND IN THE MOUSE WE
DO THIS INJURY PARADIGM IN WHICH
WE'LL INJURY THE NERVE BOTH
SENSORY AND MOTOR AXONS AND WHAT
YOU'RE SEEING HERE IS A VIEW OF
THE MOUSE SPINAL CORD THAT WE
HAVE STAINED AND CLEARED AND
VISUALIZING HERE MICROGLIA THE
INFLAMMATORY CELL THAT LIVE IN
THE SPINAL CORD IN THE BRAIN AND
THERE ARE TWO CLOUD OF THEM.
ONE OF THEM IS IN THE PLACE THAT
RECEIVES INPUT FROM THE SENSORY
NEURONS AND ONE IS SURROUNDING
WHERE THE MOTOR NEURONS LIVE.
WE LOOKED AT -- WHAT I FORGOT TO
MENTION, SORRY, ON THE SIDE OF
THE SPINAL CORD WHERE YOU SEE
THE TWO CLOUD OF MICROGLIA IS
WHERE WE PERFORMED THE INJURY.
THE OTHER SIDE WAS UNINJURED.
GET THIS NEURAL INFLAMMATION AND
WHEN WE LOOKED IN A KNOCKOUT
ANIMAL THIS WAS PREVENTED AND IN
THE SENSORY AND MOTOR NEURONS
AFTER WE CUT THEM, THAT
ACTIVATED THE DLK PATHWAY IN THE
AXONS AND IT SWITCHES ON A GENE
CALLED CSF1 AND THAT GENE GETS
EXPRESSED IN BOTH THE NEURON
TYPES AND IT IS A SIGNAL TO THE
MICROGLIA IN THE SURROUNDING
TISSUE TO PROLIFERATE.
AND THAT'S WHAT YOU WERE SEEING
WITH THE WHITE CLOUD.
IN THE SPINAL CORD.
I'M GOING SWITCH GEARS NOW.
THIS WAS REALLY INTERESTING
BECAUSE THIS WAS AN EXAMPLE OF A
GENE THAT GETS TURNED ON IN
RESPONSE TO THE INJURY AND WE
WERE REALLY INTERESTED OR ARE
INTERESTED IN KNOWING WHAT WOULD
THE WHOLE ENSEMBLE OF THE GENES
WITH INJURY LOOK LIKE AND ONE
WAY IS TO YOU SINGLE CELL
SEQUENCING AND WERE INTERESTED
IN DOING THIS IN SPINAL MOTOR
NEURONS.
THIS IS TWO GRADUATE STUDENTS
WHO DID THE WORK AND PUBLISHED
LAST YEAR AND SHOW A COUPLE
HIGHLIGHTS FROM THE STUDY.
WHAT WE IN THE WORK WAS NOT
STUDY IN THE CONTEXT OF INJURY
BUT GENERATE AN ATLAS OF THE
DIFFERENT KINDS OF SPINAL MOTOR
NEURONS THAT EXIST IN A HEALTHY
MOUSE AND USE IT FOR THE
BASELINE ATLAS FOR WHAT HAPPENS
IN AN INJURY OR DISEASE CONTEXT.
WHAT WE DID WAS ABLE TO LABEL
THE SPINAL MOTOR NEURONS YOU SAW
IN GREEN AND ISOLATE THEM FROM
THE SPINAL CORD OF MICE AND THEN
INDIVIDUALLY SEQUENCE THE WHOLE
ENSEMBLE OF GENES EXPRESSED IN
EACH INDIVIDUAL NEURON.
AND WHAT YOU END UP WITH IS AN
ATLAS THAT LOOKS LIKE THIS WHERE
EACH DOT REPRESENTS ONE CELL AND
WE HAVE AND THE LOCATION OF THE
DOT REFLECTS HOW SIMILAR AND
PROXIMITY TO ANOTHER DOT
REFLECTS HOW SIMILAR THE
TRANSCRIPTOME MEANING ALL THE
GENES EXPRESSED FROM THAT CELL
ARE TO EACH OTHER.
TWO GREEN CELLS WILL RESEMBLE
EACH OTHER VERY CLOSELY OPPOSED
TO TWO CELLS OF ANOTHER COLOR IN
THIS CASE.
WE HAVE SKELETAL MOTOR NEURONS
THAT CONNECT TO MUSCLE AND
OTHERS THAT CONNECT TO GLANDS
AND CONTROL ORGANS AND
INTERNEURON CONTROL HOW NEURONS
TALK TO EACH OTHER IN THE SPINAL
CORD.
I'M JUST GOING TO FOCUS ON THIS
SUB TYPE OF ALPHA MOTOR NEURON
THAT CONNECT TO SKELETAL MUSCLE
AND CONTROL MOVEMENT.
IF WE TAKE A CLOSER LOOK AND DO
SUBCLUSTERING LOOKING WHETHER
THERE ARE SUB TYPES BETWEEN
THEM, WHAT WE NOTICE WAS
SOMETHING VERY INTERESTING.
WE WERE ABLE TO -- WE WERE ABLE
TO LOOK AT THIS BY LEVEL.
WHETHER THE CELL CAME FROM A
PART OF THE SPINAL CORD THAT'S
INNERVATING THE FOUR LIMBS OR
HIND LIMBS OR BODY WALL AND YOU
CAN SEE FOR EXAMPLE IN THIS RED
BOX THERE'S A GROUP OF NEURONS
THAT ARE ONLY PRESENT IN LIMB
INNERVATING LEVELS BUT ABSENT
FROM THE THORACIC REGION.
WE HYPOTHESIZED THESE WERE
SPECIALIZED TO DO WITH
INNERVATING A LIMB AND THEN ONE
OF THE PIECES OF INFORMATION WE
GET FROM THE SEQUENCING IS THE
BEST GENE FOR THAT POPULATION.
IT WAS A GENE CALLED CTNE4.
AND SO WHAT WE DID WAS TO INJECT
A TRACER INTO MUSCLES OF THE
LIMB AND LOOK AT THE SPINAL CORD
AT LABELLED CELLS AND USING THE
SEQUENCING, FOR EXAMPLE, THIS
GENE CPNE4 WE CAN THEN SEE
WHETHER THE BLUE SELL THAT WAS
LABELLED WE INJECTION IN THE
MUSCLE REGION CORRESPONDED TO
THE POPULATION WE DEFINED IN THE
SINGLE CELL DATA SET AND WE
FOUND THAT SO THERE ARE TWO
EXAMPLES OF TWO BLUE CELLS THAT
ARE ALPHA MOTOR NEURONS AS SHOWN
BY THE RED MACKER AND EXPRESSED
THE CPNE4 REGION AND WE FOUND
THAT THESE ARE THE EQUIVALENT OF
A DIGIT INNERVATING MOTOR
NEURON.
WE ADVANCED OUR BASIC BASELINE
KNOWLEDGE OF WHAT MOTOR NEURONS
EXIST AND DID AN ANALOGOUS THING
AND DISCOVERED MARKERS FOR THE
SUB TYPE THAT CONTROL BREATHING.
I JUST WANT TO SHOW YOU THESE
DATA SETS ARE ACCESSIBLE.
THEY'VE BEEN DEPOSITED IN THESE
TWO PLACES AND WE'RE CURRENTLY
MAKING NEW GENETIC TOOLS, FOR
EXAMPLE, WE CAN MAKE MICE
LABELLED IN SPECIFIC SUB
POPULATIONS OF NEURONS AND CAN
STUDY WHAT HAPPENS TO THEM WHEN
THEY GET INJURED OR WHETHER WE
CAN PROMOTE REGENERATION AND
REPAIR, FOR EXAMPLE.
NOW I'LL SWITCH GEARS FOR THE
LAST VIGNETTE WHICH IS I SHOWED
YOU THIS -- I INTRODUCED THE
WHOLE PATHWAY AROUND DLK AND
THIS IS ALL WELL AND GOOD BUT
MOST OF WHAT WE KNOW HAS BEEN
GENERATED FROM FINDINGS IN IN
THE MOUSE.
AND WHAT WE'D REALLY LIKE KNOW
IS HOW VALID IS THIS IN THE
HUMAN CONTEXT?
AND VERY LITTLE WAS KNOWN ABOUT
THE BIOLOGY OF DLK IN HUMAN
NEURONS.
SO WHAT WE'VE STARTED TO DO IS
STUDY THIS IN HUMAN NEURONS AND
THE WAY WE DO THIS IS BY USING
IPSC DERIVED NEURONS.
IT'S ESSENTIALLY TAKING FOR
EXAMPLE SKIN CELLS FROM A PERSON
AND REPROGRAMMING THEM IN THE
DISH SO WE CAN PRODUCE NEURONS
AND WE HAVE A COLLABORATOR IN
NINDS WHO HAS SPEARHEADED
DEVELOPING THIS TECHNOLOGY AND
STARTED USING IT TO ASK
QUESTIONS ABOUT DLK, FOR
EXAMPLE.
THIS IS JUST A METHOD TO
GENERATE THE NEURONS.
SO THIS IS WORK DONE BY THIS
TEAM IN MY LAB AND WHAT WE'VE
DOING ESSENTIALLY IS DOING
ANALOGOUS EXPERIMENTS TO WHAT
WE'VE BEEN DOING IN THE MOUSE IN
TERMS OF CAUSING AN AXON INJURY
AND WE'RE LOOKING AT THE NEURONS
UNDER A MICROSCOPE AND USING A
LASER BEAM TO INJURY INDIVIDUAL
AXONS AND THEN WE CAN IMAGE
THESE AXONS AND THE CELL BODIES
OF THE NEURON UNDER THE
MICROSCOPE AND SEE WHAT HAPPENS.
SO IN THIS VIDEO, I HOPE YOU CAN
SEE WE START WITH A RED AXON
JUST LIKE IN THE DIAGRAM AND
THEN AS THE MOVIE GOES ON THERE
IS A PROGRESSIVE LOSS OF THE RED
FLUORESCENCE AND MAY BE
DIFFICULT TO SEE BUT THE AXONS
ARE UNDERGOING A RETRO GRADE
WAVE OF DEGENERATION TOWARDS THE
CELL BODY AFTER THE LASER.
WE'RE PRETTY EXCITED ABOUT THIS
BECAUSE IT MEANS WE CAN STUDY
THIS PHENOMENON IN THE DISH.
IF WE IMAGE THE CELL BODY AND
HERE IN THE VIDEO YOU'LL SEE
WHAT HAPPENS IN THE CELL BODY OF
AN AXON OF A NEURON THAT'S UNDER
GONE THE AXON INJURY.
THAT'S THIS ONE HERE.
THIS NEURON HERE ON THE TOP IS
NOT INJURED.
AND I'M STARTING THE VIDEO NOW.
WE CAN SEE THE CELL THAT WAS
INJURED EVENTUALLY DIES.
THE AXON DEGENERATING AND THE
CELL BODY DIES.
WE'RE EXCITE ABOUT THIS MODEL
BECAUSE WHEN DO YOU THIS SAY
CULTURED MOUSE MODELS THAT'S NOT
WHAT HAPPENS.
THE AXONS ACTUALLY THEY MIGHT
UNDER GO A LITTLE BIT OF
DEGENERATION BUT THE CELLS
SURVIVE.
YOU CAN SEE BIG DIFFERENCES
BETWEEN THIS TYPE OF NEURON AND
MOUSE NEURON IN A DISH.
I DON'T HAVE TIME TO GO INTO THE
DETAILS BUT THE POSTDOC IN MY
LAB DISCOVERED A NEW PATHWAY
DOWN STREAM OF DLK MEDIATING
THIS AXON DEGENERATION AND CELL
DEATH OF THE NEURONS VERY YA DLK
AND THIS SAY NEW -- VIA DLK AND
THIS IS A NEW PATHWAY AND TO
CONCLUDE TODAY I'VE SHOWN YOU
THATS THERE'S A LINK BETWEEN THE
AXON INJURY RESPONSE AND
NEUROINFLAMMATION AND THE
SIGNALLING CAN BE WIDE RANGING
AND CAN IMPACT THE NEURON ITSELF
AND SURROUNDING CELLS.
I'VE SHOWN YOU WE CAN USE SINGLE
CELL TRANSCRIPTOMICS TO IDENTIFY
CELL TYPES AND WE'RE EXCITED TO
INVESTIGATE HOW THE TYPES MAY
DIFFERENTIATE VULNERABILITY TO
DISEASE AND LASTLY I'VE SHOWN
YOU WITH -- WE CAN ELUCIDATE
RELEVANT PATHWAYS USING A NEW
MODEL OF AXON DEGENERATION
LEADING TO NEURON DEATH IN HUMAN
NEURONS.
I HOPE I'VE CONVINCED YOU THAT
THIS TYPE OF FUNDAMENTAL
KNOWLEDGE IS ESSENTIAL
NEURODEVELOPMENT DISORDER AND
DEVELOP CLINICAL THERAPIES AND
NEURAL REPAIR AND HOPE I'VE
HIGHLIGHTED HOW COMPLEMENTING
WORK IN MODEL ORGANISMS WITH
STUDIES IN HUMAN NEURONS CAN
ACCELERATE TRANSLATION OF BASIC
RESEARCH TO CLINICALLY USEFUL
KNOWLEDGE.
SO WITH THAT I'D LIKE TO THANK
THE MEMBERS OF MY LAB AND OUR
COLLABORATORS AND FOR THE
OPPORTUNITY TO SPEAK TO YOU
TODAY.
THANK YOU VERY MUCH.
>>THANK YOU, CLAIRE, THAT WAS
FABULOUS.
OUR THIRD SPEAKER IS THIRD
SPEAKER IS JOHN CONSTANTINO FROM
CHILDREN'S HEALTH CARE ATLANTA
AND EMORY UNIVERSITY AND CHILD
PSYCHIATRIST AND PEDIATRICIAN
WHO WORKS ON UNDERSTANDING
GENETIC AND ENVIRONMENTAL
AFFECTS ON SOCIAL DISORDER OF
CHILDHOOD PARTICULARLY AUTISM.
EVEN IF YOU DON'T KNOW JOHN YOU
MAY BE FAMILIAR WITH HIS
SIGNATURE QUANTITATIVE RATING
SCALE, THE SOCIAL RESPONSIVENESS
SCALE THAT'S BEEN TRANSLATED TO
MORE THAN 60 FOREIGN LANGUAGES
AND USED IN OVER 2 MILLION TEST
ADMINISTRATIONS PER YEAR IN
RESEARCH AND CLINICAL SETTINGS.
IN ADDITION TO HIS WORK IN THE
AUTISM SPECTRUM, HE AND HIS TEAM
WORK TO UNDERSTAND AND OFFSET
THE INFLUENCE OF MALTREATMENT ON
SOCIAL TREATMENT IN CHILDHOOD.
HE IS CURRENTLY LEADING EFFORTS
TO ADDRESS THE GROWING EPIDEMIC
OF BEHAVIORAL AND MENTAL HEALTH
ISSUES IN CHILDREN AND
ADOLESCENTS IN GEORGIA.
JOIN ME IN WELCOMING, JOHN.
THANK YOU.
>>THANK YOU SO MUCH FOR THE
INTRODUCTION AND IT'S GREAT TO
BE WITH EVERYONE.
I WANT TO OFFER MY
CONGRATULATIONS TO NICHD ON THIS
VERY IMPORTANT 60th.
I'M DLAT ED DELIGHTED TO BE PAT
OF THE SYMPOSIUM AND THANK
DR. BIANCHI AND I WANT TO POINT
OUT THAT DIANA ASKED ME TO TALK
ABOUT SCREENING DISABILITIES IN
CHILDREN AND FOR CHILDREN WITH
AUTISM AND SO THAT WILL BE THE
TOPIC MIFF TALK AND I'M ALSO
VERY HAPPY TO BE REPRESENTING IN
A CERTAIN WAY THE INDIVIDUALS
WHO HAVE LED SOME OF THE
INTELLECTUAL DEVELOPMENTAL
DISABILITIES RESEARCH CENTERS
NICHD HAS FUNDED OVER THE YEARS.
I WAS PROUD TO BE A MEMBER OF
THE NETWORK AND THE WORK I'LL
SHOW TODAY REPRESENTS WORK DONE
AT WASHINGTON UNIVERSITY IN THAT
CENTER WHICH IS FLOURISHING
TODAY.
SO FIRST, SOME DISCLOSURES, NO
STOCK EQUITIES TO REPORT BUT
CONSULTING RELATIONSHIP WITH
SCREENING TECHNOLOGIES.
DO I RECEIVE ROYALTIES FOR THE
SPECIAL DISTRIBUTION OF THE
INSTRUMENT THAT WAS MEASURED
SOCIAL RESPONSIVENESS SCALE AND
I ALSO WANT TO POINT OUT MY
RESEARCH SUPPORT FROM NICHD OVER
THE YEARS OF COURSE THE CENTERS
FOR DISEASE CONTROL AND NATIONAL
INSTITUTE OF MENTAL HEALTH.
I WAS 6 WEEKS OLD WHEN NICHD WAS
FOUND AND GREW UP IN THE ALBERT
EINSTEIN COLLEGE OF MEDICINE AND
MY LAB WAS FUNDED BY NICHD OVER
THE YEARS AND AS I SAID I'VE
BEEN A MEMBER OF THE IEDRC
NETWORK UNTIL MY VERY RECENT
MOVE THAT WAS ALLUDED TO.
THIS PIVOT IN MY OWN CAREER
FOLLOWS SOMETHING THAT ISSUES
DIRECTLY FROM THE KENNEDY
FOUNDATIONS OF NICHD AND THIS IS
FROM AN ARTICLE THAT WAS IN THE
NEW YORK TIMES A COUPLE WEEKS
AGO.
I'M A PSYCHIATRIST BY TRAINING
AND THIS ARTICLE TALKED ABOUT
THE SOLUTION TO AMERICA'S MENTAL
HEALTH CRISIS WHICH VERY MUCH
RELATES TO ALL ASPECTS OF HUMAN
BRAIN AND MIND DEVELOPMENT
THAT'S BEEN ADDRESSED IN THIS
CONFERENCE AND IS PIVOTAL TO
NICHD'S MISSION.
WHAT THIS ARTICLE POINTED OUT
WAS PRESIDENT KENNEDY ENVISIONED
A METHOD FOR THE EVIDENCE-BASED
OF THE FIELD THAT TIM SHRIVER
POINTED OUT NOT ONLY THINGS WE
STILL DON'T KNOW BUT THINGS
WE'RE DELIVERING THAT WE DO
KNOW.
THIS PIVOT IN MY CAREER IS BASED
ON SOME OF AN UNFULFILLED
PROMISE OF PRESIDENT KENNEDY TO
GET BACK TO THE DELIVERY AND
BALANCE OF SCIENCE AND SERVICE.
I MADE THIS RECENT MOVE TO
CHILDREN'S HEALTH CARE ATLANTA
IN EMORY BASED ON A FORTUNATE
OPPORTUNITY TO REALLY IMPLEMENT
THE EVIDENCE BASE FOR SUPPORT OF
CHILD MIND, BRAIN AND
DEVELOPMENT WITH A HEALTH CARE
MAKING A TRULY HISTORIC
COMMITMENT AND INVESTMENT IN
CHILDREN'S MENTAL HEALTH AND I
FEEL FORTUNATE TO MOVE IN THAT
DIRECTION IN MY CAREER AND LOSS
TO POINT OUT THAT I WILL
ABSOLUTELY BE FOLLOWING THE
LEADS WE'VE DEVELOPED I'LL TELL
YOU ABOUT TODAY.
THE LEADS ARE IN VERY GOOD HANDS
AND I THINK THAT EVIDENCE BASE
IS GOING TO CONTINUE TO
FLOURISH.
WELL, OUR WORK STARTED WITH THE
VERY DIFFICULT PROBLEM THAT WE
WERE NOT CERTAIN ABOUT THE
STRUCTURE OF AUTISM SYMPTOMS AS
THEY MANIFEST THEMSELVES IN
NATURE.
AND WHEN WE TOOK A QUANTITATIVE
APPROACH TO THE MEASUREMENT OF
AUTISM AS A CLUSTER OF SYMPTOMS
AND TRAITS, ONE OF THE EARLIEST
THINGS WE FOUND IN THE SOCIAL
RESPONSIVENESS SCALE AND
IMPLEMENTING THAT IN THE
POPULATION IS THAT THOSE TRAITS
AND SYMPTOMS THAT CHARACTERIZE
AUTISM ARE FULLY DISTRIBUTED IN
NATURE.
YOU CAN SEE THE QUOTE, UNQUOTE,
BELL CURVE ON THE LEFT AND ONE
OF THE INTERESTING THINGS WE
LEARNED EARLY ON IN OUR WORK AND
THE INHERITED FACTORS THAT
DETERMINE INDIVIDUAL VARIATION
IN THE TRAITS ARE INFLUENTIAL AS
FOR AUTISM AND THE HERITABILITY
ARE THE SAME ORDER ON THE
HERITABILITY OF AUTISM ITSELF.
AND THESE TRAITS ARE EXTREMELY
STABLE OVER TIME IN THE UPPER
RIGHT HAND QUADRANT IS A SCATTER
PLOT OF THE REPEATED
MEASUREMENTS OVER THE YEARS OF
LIVES OF INDIVIDUALS FOLLOWED
OVER THE COURSE OF CHILDHOOD AND
SHOWING HOW STABLE THE TRAITS
ARE ACROSS THE WIDE DISTRIBUTION
AND THE X AXIS BEING TIME 1 AND
Y AXIS BEING TIME 2.
THESE TRAITS ALSO ARE FAITHFULLY
TRANSMITTED IN FAMILIES.
THIS IS A STUDY EMBEDDED WITH
THE STUDY SHOWING THE NORMATIVE
VASION IN TRAITS ARE SOCIALED
WITH THE TRAITS OF CHILDREN AND
WHEN PARENTS HAVE BOTH HAVE
SOMEWHAT OF AN ACCESS TO THE
TRAITS RELATIVE TO THE
POPULATION WHEN THEY'RE THEY'RE
WITHIN THE NORMAL RANGE OF
DEVELOPMENT THIS STARTS TO
INCREASE THE LIABILITY FOR
AUTISM AMONGST THEIR CHILDREN
AND THE LIKELIHOOD OF THOSE
MATINGS OCCURRING DOES NOT
HAPPEN BY CHANCE BECAUSE THESE
TRAITS ARE ALSO VERY POWERFUL
INFLUENCERS ON MATE SELECTION
AND PEOPLE WITH HIGHER OR LOWER
LEVELS OF THE CHARACTERIZING
VARIANTS OF THE FEATURES OF
SOCIAL VARIATION WILL FIND EACH
OTHER AND THESE ARE IMPORTANT
ASPECTS ON MATE SELECTION AND
INTERGENERATIONAL TRANSMISSION
OF AUTISM IN THE POPULATION.
AND THIS WAS TO THINK ABOUT THE
SPACE BETWEEN AUTISM WHEN IT'S
INHERITED AND AUTISM WHEN IT
ARISES AS A FUNCTION OF A DE
NOVO CHANGE IN THE GERM LINE
THAT RESULTS IN A NEW OR
SPORADIC CASE OF AUTISM.
AS SHE APPROPRIATELY POINTED OUT
IN CASES OF AUTISM, WHEN AUTISM
IS TRANSMITTED IN FAMILIES, WE
KNOW VERY LITTLE ABOUT THE
BACKGROUND OF GENETIC VARIATION
RELATES TO THE ACTUAL SYSTEM
STRUCTURE AND MORE ABOUT THE
DEMOVE -- DE NOVO CASES FROM
THE DELETERIOUS CASES.
AND THEY'RE NOT ALWAYS THE SAME
AS WHAT IS MOST COMMONLY OCCURS
IN THE POPULATION AND THOSE WITH
SINGLE GENES ARE ASSOCIATED WITH
DEVELOPMENT AND THERE'S MORE
COMMON CASES OF AUTISM AND
THERE'S THE DISTINCT LACK OF AN
EFFECT OF SEX ON THE PREVALENCE
FOR THESE CONDITIONS WHEREAS
POPULATION WIDE SEX IS A MAJOR
PLAYER THREE AND FOUR TIMES MORE
COMMON IN BOYS THAN GIRLS
WORLDWIDE.
THE FACT WITH AUTISM IS MOST THE
CASES THAT OCCUR IN THE
POPULATION ARE OF THE INHERITED
KIND.
SO A LOT OF OUR WORK HAS MOVED
TOWARDS UNDERSTANDING HOW DOES
GENETIC VARIATION RELATE TO THE
MORE COMMON FORMS OF AUTISM AND
WHEN THEY'RE COMMON AND BEING
INHERITED, THE NECESSITY OF
DEALING WITH THAT IS THAT WE'RE
DEALING WITH POLY GENIC RISK AND
HOW THAT GETS TRANSMITTED IN
FAMILIES.
AND AS AN EXAMPLE OF HOW
POWERFUL THIS IS I SHOWED THE
TRANSMISSION FROM PARENTS TO
THEIR CHILDREN, THIS IS AN
EXAMPLE BY COLLEAGUES WHO LOOK
AT THE 22Q.2 DELETION AS A MODEL
OF INTENSITY GENETIC VARYING AND
CHROMOSOMAL VARIATION IN A VERY
WIDE OUTCOME DEPICTED AND THIS Y
DISTRIBUTION AND OUTCOMES THAT'S
MANIFESTED WITH CHILDREN WITH DE
NOVO REARRANGEMENTS AT THAT
CHROMOSOMAL REGION AND WHERE
THEY WIND UP IN THE BROAD CURVE
OF INTELLECTUAL OUTCOME ON THE
BASIS OF THAT DEPENDS ON WHERE
THEIR PARENTS FELL WITHIN THE
FULLY NORMAL RANGE.
SO THESE ARE PARENTS THAT DID
NOT HAVE THIS PARTICULAR
MUTATION.
THEIR CHILDREN HAVE THE MUTATION
AND THE CHILDREN'S OUTCOMES
DEPENDS ESSENTIALLY ON THE
GENETIC BACKGROUND OF THE
PARENTS AS IT RELATES TO THE
PHENOTYPE OF INTEREST, IN THIS
CASE I.Q. AND THE EXACT SAME
THING TRUE IS FOR AUTISTIC
TRAITS AND FEATURES OF LIABILITY
THAT ARE INFLUENCED BY THIS
CHROMOSOMAL REARRANGEMENT AND
THAT'S BEEN SHOWN FOR OTHER
CHROMESOMAL REARRANGEMENTS AND
STARTED THINKING WHAT MAY
COLLIDE WITH PARENTAL LIABILITY
FOR TRAITS AND THIS INFLUENCE ON
OUTCOME, NOT A COMPLETE
INFLUENCE ON OUTCOME BUT IS IT
POSSIBLE TO IDENTIFY OTHER
INHERITED FACTOR COLLIDE WITH
THAT PARENTAL LIABILITY TO
FURTHER RAMP UP RISK FOR THESE
MORE INHERITED KINDS OF AUTISM.
ONE OF THE CLUES THAT WE HAD
IDENTIFIED FROM STUDYING TWINS
IN FAMILIES WAS IDENTIFYING
WITHIN BABIES WHAT PREDICTED
SOCIAL VARIATION AND OUTCOME AS
MEASURED BY THAT SAME
QUANTITATIVE TRAIT.
THE SOCIAL RESPONSIVENESS SCALE
AND WHAT WE LEARNED IN STUDIES
BABIES IS THAT NOT ONLY THEIR
PARENTS AUTISTIC LIKE TRAITS BUT
TIRE -- THEY'RE BABIES
VARIATION IN TRAITS RELATED TO
ADHD AND THINKING OF THESE
TRAITS AND MOTOR DEVELOPMENT
TRAITS THAT CAN INFLUENCE SOCIAL
OUTCOMES IS SOMETHING WHERE THE
PROSPECT OF SCREENING MAY
INVOLVE LOOKING FOR THE THINGS
FOR THE DIAGNOSIS YOU'RE
INTERESTED IN AND OTHER THINGS
CONTRIBUTE BEING TO IT.
IN THIS CASE ONE OF THE PROFOUND
LESSONS LEARNED FROM THIS
PARTICULAR STUDY IS THAT EACH OF
THOSE FACTORS AND THE PARENTS'
AUTISTIC TRAITS AND THE MOTOR
VARIATION OF THE PARENTS AND THE
ADHD SYMPTOMATOLOGY AND THINK
ABOUT THAT.
THESE PARTICULAR QUANTITATIVE
TRAITS ALL OF WHICH ARE
CONTINUOUSLY DISTRIBUTED IN
HUMAN POPULATION S AND INHERITED
AND DIFFERENT GENETICALLY AND
HOW THEY MAY COMBINED OR COLLIDE
TO PRODUCE THE OUTCOMES ON THE
EXTREME END REPRESENT A
DIAGNOSIS OF AUTISM.
ANOTHER AND COLLABORATING WITH A
METHOD FOR MEASURING ONE OF THE
PATHOMNEMONIC TREATS OF THE
AUTISTIC SYNDROME WHICH IS EYE
CONTACT.
AND IN A STUDY PUBLISHED IN
NATURE SHOWED WHEN YOUNG
CHILDREN ARE MANIFESTING LOW
LEVELS OF SOCIAL ORIENTATION TO
FACES, TO THE SOCIAL FEATURES OF
THE ENVIRONMENT THESE CHILDREN
REALLY ARE MUCH HIGHER RISK FOR
AUTISTIC SYNDROMES THAT IS IN
THE RED DOTS IN THESE PARTICULAR
SCATTER PLOTS AND THE WHITE DOTS
IN THE SCATTER PLOTS ARE
TYPICALLY DEVELOPING CHILDREN.
ONE OF THE THINGS TO NOTICE IS
THERE ARE SOME TYPICALLY
DEVELOPING CHILDREN WHO HAVE LOW
LEVELS OF HIGH AND MOUTH AND
FACE LOOKING BUT NEVERTHELESS DO
OKAY.
DEMONSTRATING THE IDEA THERE MAY
BE ASPECTS OF EARLY QUANTITATIVE
DEVELOPMENTAL LIABILITY THAT
MUST COMPOUND WITH OTHER ONES TO
PRODUCE A SIN DROLL OF CLINICAL
IMPAIRMENT.
AND WA WE FOUND IN STUDYING THE
RECURRENCE OF AUTISM SO WHEN A
BABE E -- BABY IS BORN INTO A
FAMILY AND ASKING IF THE BABY
WILL DEVELOP AUTISM NOT ONLY CAN
THE PREDICTION OF WHICH BABY
WILL BE PREDICTED IMPROVED BY
EYE TRACK AND MOTOR DEFICITS
JUST LIKE WE FOUND REGARDING
SOCIAL VARIATION IN THE
POPULATION THESE REPRESENT
OCCURRENCE PREDICTORS AND IN THE
GENERAL POPULATION ARE ALL
CONTINUOUSLY INHERITABLE AND
GENETIC AND LED US TO BELIEVE
THE STUDY OF AUTISM AT LEAST THE
INHERITED VERSIONS OF AUTISM MAY
RESOLVE TO RELATING SETS OF POLY
GENIC RISK TO INDIVIDUAL
DEVELOPMENT LIABILITIES.
THIS REPRESENTS AN INFANCY
DECONSTRUCTION OF THE AUTISTIC
SYNDROME WHERE WE MAY BE ABLE
NOW TO FOCUS OUR SCREENING
EFFORTS NOT ON THE DEVELOPMENT
OF THE CONDITION ITSELF OR THE
CHARACTERIZING TRAITS AND
FEATURES OF THE CONDITION BUT ON
WHAT COMES BEFORE THAT
DEVELOPMENTALLY AND ENGENDERED
BY POLY GENIC FACTORS AND THE
FOUR FACTORS MAY IN COMBINATIONS
RELATE TO THE AUTISTIC SYNDROME
AND AN IMPORTANT COROLLARY IS
CHILDREN WHO ARE STUDYING IN
CONTRAST TO KIDS WITH AUTISM FOR
BIOMARKER STUDIES AND BRAIN
IMAGING STUDIES AND SO FORTH MAY
CARRY SOME OF THESE LIABILITIES
THEMSELVES IN MILDER FORM OR IN
COMBINATIONS NOT GOING TO PUSH
CHILDREN TOWARDS THE FULL
DIAGNOSIS.
AND THIS KIND OF SYSTEM OF
THINKING ABOUT AN INHERITED
CONDITION IS AN AMALGAM OF MORE
FUNDAMENTAL TRAITS IS AKIN TO
THINKING ABOUT WHAT IS DEPICTED
ON THE LOWER LEFT HAND OF THE
SCREEN THE DIAGRAM OF WHAT
CAUSES HYPERTENSION AND BLOOD
PRESSURE CAN BE MEASURED AND
THOUGHT OF AS A SINGLE
QUANTITATIVE TRAIT BUT WHEN YOU
THINK ABOUT IT IS AN AMALGAM OF
A NUMBER OF TRAITS THAT ARE
DYNAMICALLY OPERATING WITH ONE
ANOTHER.
AND ELECTROLYTE BALANCE AND
CORTICOID VARIATION AND EACH HAS
ITS OWN STRUCTURE AND
UNDERSTANDING THE EVOLUTION OF
BLOOD PRESSURE ARE TREATMENT
RESOLVED TO WHAT THE FACTORS
ARE.
A COUPLE LAST POINTS TO MAKE AND
THEN WE'LL WRAP UP.
FIRST, THAT ONE OF THESE
PREDISPOSING FACTORS ADHD LIKE
TRAITS IS INTERESTING NOT LONG
OKAY WE CONSIDERED INDEPENDENT
FROM AUTISM AND NOW WE KNOW SOME
OF THE THINGS WE THINK OF AS
NUISANCE COMORBIDITIES OF AUTISM
OR CO-OCCURRING CONDITIONS CAN
BE PART OF THE CAUSE OF THE
CONDITION ITSELF.
AND THINKING ABOUT HOW TO SCREEN
FOR THAT AND HOW TO LOOK FOR
THAT EARLY WILL BE A VERY
IMPORTANT PART OF THE NEXT
GENERATION OF SCREENING.
ANOTHER VERY IMPORTANT PRINCIPLE
WE LEARNED FROM STUDYING IN A
QUANTITATIVE WAY THOUGH 85% OF
AUTISM IS INHERITED, THE
DIAGNOSIS ITSELF IS INHERITED
BUT THE SEVERITY OF THE
CONDITION CAN VARY GREATLY EVEN
BETWEEN TWO INDIVIDUALS WHO ARE
CLONES OF ONE ANOTHER.
SO IN STUDYING IDENTICAL TWINS
WHO MOST THE TIME IF ONE'S
AFFECTED THE OTHER ONE'S GOING
TO BE AFFECT AUTISM, THERE'S
SYMPTOMS CAN DIFFER PROFOUNDLY
AND NA IS NOT TRUE FOR CHILDREN
IN THE POPULATION WHO ARE
IDENTICAL TWINS WHO GENERALLY
SHARE THE EXACT SAME LEVEL OF
QUANTITATIVE AUTISTIC BURDEN AND
YOU START TO SEE VARIATION THAT
MAY RELATE TO STOCHASTIC
INFLUENCES OVER THE COURSE OF
DEVELOPMENT AND HAVE TO BE
THOUGHT ABOUT AS FAR AS PLAYERS
IN THE SYNDROME.
AND THERE'S A PLOT THAT SHOWS
THE COMORBIDITY OF AUTISM
LONG-TERM AND THE LIKELY CAUSE
IS THE INABILITY TO DELIVER TO
THOSE CHILDREN THE EVIDENCE BASE
FOR EDUCATION AND EARLY
DEVELOPMENT THERAPIES THAT WOULD
ALLOW THEM TO REACH A BETTER
LEVEL OF FUNCTIONING GIVEN THE
CONDITION OF AUTISM OF BEING A
PART OF THEIR DEVELOPMENTAL MAKE
UP.
SO CONCLUSIONS, WHAT SHOULD WE
BE SCREENING FOR?
NOT JUST DIAGNOSIS, A AN
AMALGAM OF PHENOTYPES THERE'S
COMPOUNDING FACTORS WE NEED TO
SCREEN FOR AND ADDRESS
PARTICULARLY THE ONES WE HAVE
THE POWER TO CHANGE.
I WANT TO ACKNOWLEDGE OUR
EXCELLENT CONTRIBUTORS TOO THE
WORK AS I MENTIONED OVER THE
COURSE OF THE TALK AND THANK
EVERYBODY FOR THE OPPORTUNITY
AGAIN TO JOIN THIS WONDERFUL
SYMPOSIUM.
THANK YOU.
>>THANK YOU, JOHN.
OUR FINAL SPEAKER TODAY IS
MICHELLE JOHNSON FROM THE
UNIVERSITY OF PENNSYLVANIA
UNFORTUNATELY, SHE HAS BEEN
PULLED AWAY TO JURY DUTY.
SHE IS DOING HER CIVIC DUTY
RIGHT NOW BUT WAS ABLE TO PRE
RECORD HER PRESENTATION.
AND DR. JOHNSON DIRECTS THE
REHABILITATION ROBOTIC RESEARCH
AND DESIGN LABORATORY WHERE SHE
SPECIALIZES IN THE DESIGN
DEVELOPMENT AND THERAPEUTIC USE
OF NOVEL, AFFORDABLE INTELLIGENT
ROBOTIC ASSISTANCE FOR
REHABILITATION IN HIGH AND LOW
RESOURCED ENVIRONMENT.
SHE HAS A BACHELOR'S OF SCIENCE
IN MECHANICAL ENGINEERING AND A
FULL BRIGHT SCHOLAR TO BOTSWANA
AND A DISTINGUISHED LECTURER.
I'LL TURN IT OVER TO MICHELLE'S
VIDEO.
>>HI.
THANK YOU FOR INVITING ME.
TODAY I'M GOING TO APPROACH THIS
TOPIC OF ENSURING HEALTHY AND
OPTIMAL LIVES FROM THE
PERSPECTIVE OF ACCESSIBLE AND
AFFORDABLE ROBOTIC TECHNOLOGIES
THAT I BELIEVE SHOULD BE OUR
GOAL IN THE FUTURE.
I JUST HAVE A FEW FINANCIAL
DISCLOSURES.
ONE I MAY BE TALKING ABOUT SOME
PATENT HAVE BEEN FILED ON REHAB
CARE AND A HAVE EQUITY IN A
SPINOFF COMPANY CALLED COOPERAL
ROBOTICS.
WE THINK ABOUT WHAT'S HAPPENING
IN HIGH-INCOME COUNTRIES AND IN
LOW AND MIDDLE-INCOME COUNTRIES
AND THE CAUSES OF DEATH AND
IMPAIRMENT ARE DIFFERENT.
IN HIGH-INCOME COUNTRIES
COMMUNICABLE DISEASES AND OUR
STRATEGIES IN TERMS OF THINKING
ABOUT WHAT IS CAUSING THIS WE
SHOULD REALIZE BOTH ARE CAUSING
PEOPLE TO LIVE WITH MORE MOTOR
IMPAIRMENT AND COGNITIVE
IMPAIRMENT.
THERE'S A GROUP OF PEOPLE THAT'S
GROWING AND LIVING WITH THESE
IMPAIRMENTS BUT AT THE SAME TIME
WE HAVE A SHORTAGE OF
CAREGIVERS.
WE HAVE A SHORTAGE OF
CLINICIANS, THERAPISTS AND WHAT
WE'RE RUNNING INTO IS A GAP IN
HEALTH CARE.
THIS GAP IS ONLY GOING TO
INCREASE.
IN MY OPINION I BELIEVE
TECHNOLOGY CAN HELP BRIDGE THIS
GAP.
AND THE TYPE OF TECHNOLOGIES I'M
TALKING ABOUT I'M TALKING ABOUT
THERAPY AND ASSISTIVE
TECHNOLOGIES.
THE THERAPY ROBOTS ARE AS YOU
CAN SEE FROM THE IMAGES ARE
ROBOTS THAT WE'RE GOING TO
DESIGN TO HELP TREAT
NEUROLOGICAL DISORDERS SUCH AS
STROKE AND CEREBRAL PALSY AND
WHATEVER ELSE IS HAPPENING.
WE CAN TARGET THEM FOR DIFFERENT
DISEASE STRUCTURES.
THE GOAL IS THEY'RE GOING TO
AUTOMATE AND DELIVER A
AUTONOMOUS THERAPY AND ASSESS
THE LEVEL OF IMPAIRMENT
HAPPENING WITH THE PERSON.
WHEN I TALK ABOUT ASSISTIVE
ROBOTS I'M TALK THIS IS
REPLACING OTHER FUNCTIONS OR
SERVING PEOPLE WITH
DISABILITIES.
NOW, THE CURRENT SYSTEMS YOU SEE
ARE MAINLY AVAILABLE IN
SUPERVISED SETTING AND IN
HOSPITAL PATIENTS IN PATIENT OR
OUT PATIENT.
ONE THING I WANT TO DO IS
CLARIFY.
WHEN I THINK OF ROBOTS IN THE
SETTING I'M THINKING THEY'RE
SHARING THE SPACE WITH THE
CAREGIVER.
IN THIS PICTURE YOU SEE THE IF
THE THERAPIST IS DEMONSTRATING
SOMETHING HOW DOES THE THERAPIST
USING THE ROBOT TO BE A
DEMONSTRATOR.
THE THERAPIST IS HELPING THE
PATIENT AND HOW TO USE THE ROBOT
TO SUPPORT THE PATIENT.
I ALWAYS WANT TO VERY MUCH
EMPHASIZE THAT MY THINKING IS
THE ROBOT IS CO-LOCATING WITH
THE CAREGIVER.
HERE'S AN ACTIVITY AND HERE WE
WERE AUTOMATING THE ROBOT TO
SUPPORT THE UPPER EXTREMITY OF A
STROKE SURVIVOR TO PRACTICE
DRINKING ACTIVITIES.
HERE'S AN EXAMPLE OF
DEMONSTRATING IN ASSISTIVE ROBOT
HERE WITH MY COLLEAGUES WE WERE
LOOKING AT USING HUMANOID ROBOTS
TO SUPPORT PLAY OF OLDER ADULTS
MAYBE IN A COMMUNITY HEALTH
SETTING,ETS ARE RA -- ETCETERA.
AND WE'VE BEEN DOING THIS OVER
20 YEARS AND PEOPLE HAVE THOUGHT
OF USING THE ROBOTICS IN THE
CLIMATE.
WHAT DID WE LEARN?
WE LEARNED THEY'RE EFFECTIVE FOR
THE MOST PART IN THE UPPER
EXTREMITY, PHYSICAL THERAPY HAS
BEEN ABLE TO DELIVER.
IT'S REPEATABLE AND ADAPTIVE.
WE CAN ACTUALLY ENABLE SEMI
AUTONOMOUS TRAINING.
WE CAN SEE WE CAN PROVIDE
REPEATABLE MEASURES AND REDUCE
RECOVERY AND IMPAIRMENT.
THIS IS NOT WITHOUT CONTROVERSY
DEPENDING ON WHERE WE'RE
THINKING WHICH ROBOTS WE ARE
USING THERE MAY BE SOME DISPUTE
IN THAT.
I WANT TO BRING OUR ATTENTION TO
ANOTHER POINT IS THAT A RECENT
PAPER OR SYSTEMATIC REVIEW
LOOKED AT WHETHER IT WAS COST
EFFECTIVE TO DO THESE ROBOTS AND
TO USE THE ROBOTS AND THEY WERE
PRIMARILY LOOKING AT TO THE
STUDIES THAT SHOWED WHETHER WE
SHOULD KEEP GOING AND ONE THING
THEY SHOWED THERE WERE ONLY FIVE
STUDIES INCLUDE ONE MY COLLEAGUE
LOOKED AT THAT LOOKED AT WHETHER
THE EASE OF THE ROBOTS COULD
SUPPORT PEOPLE GOING FORWARD AND
THE UPTAKE IS, YES.
THE STUDIES FAVOR THE USE OF
ROBOTS IN TERMS OF INTERVENTION
WITH ACUTE AND CHRONIC PATIENTS
AND SOME SEVERE AND THAT IS
ENCOURAGING.
THAT TELLS US WE MIGHT BE ABLE
TO REALLY SERIOUSLY THINK ABOUT
HOW WE USING IT BUT MY CHALLENGE
WITH THIS IS WHERE ARE THESE
ROBOTS NOW?
THEY'RE GLOBALLY MAINLY IN HIGH
INCOME COUNTRIES.
BUT THE BURDEN OF THE DISEASES
THAT WE'RE SEEING ARE IN LOW AND
MIDDLE-INCOME COUNTRIES AND IN
THINKING HOW WE MOVE FORWARD IN
THE FUTURE, I THINK WE NEED TO
MOVE FORWARD GLOBALLY SO WHEN
WE'RE THINKING ABOUT THE USE OF
THESE TECHNOLOGIES, HOW DO WE
GET THEM INTO LOW-RESOURCE
SETTINGS AND INTO DEVELOPING
COUNTRIES.
MAIN PROBLEM IS WITH THE CURRENT
SYSTEMS THEY'RE MECHANICALLY
HUGE AND HIGH COST AND HOW DO WE
BRIDGE THIS GAP AND MY VIEW IS
IS WITH AFFORDABLE TECHNOLOGY
AND LET'S STEP BACK AND THINK
WHAT THE FUTURE IS LIKE.
WHAT WE SEE HAPPENING IN
HIGH-INCOME COUNTRIES INCLUDING
THE U.S. WE SEE THERAPY AND
REHAB IS MOVING OUT OF THE ACUTE
AND SUB-ACUTE SETTINGS INTO THE
COMMUNITY-BASED SETTINGS.
A RECENT STUDY SHOWED 75% OF
PATIENTS THAT ARE DISCHARGED AND
I'M SPEAKING SPECIFICALLY AT
STROKE WILL BE GOING HOME AND
STILL HAVE VISUAL IMPAIRMENT.
40% GO HOME WITHOUT POST-ACUTE
CARE.
THAT MEANS REHAB IT TAKING PLACE
IN THE COMMUNITY AT HOME IN
NURSING HOMES IN DAYCARE
SETTINGS IN ASSISTED LIVING
SETTINGS AND THESE ARE OFTEN LOW
RESOURCE SETTINGS.
IN LOW AND MIDDLE INCOME
COUNTRIES THE ISSUE IS MORE
COMPOUNDING.
WHY?
WE SEE IT'S NOT UP THERE WITH
CURATIVE MEDICINE OR PREVENTIVE
BUT MAY NOT IN AS CENTRALIZED.
SO PEOPLE WITH DISABILITIES ARE
NOT GETTING THE TYPE OF CARE
THEY NEED.
THE ACCESS TO REHAB IS LOW AND
WITH THE CHART YOU CAN SEE
AFRICA AND SOME OF THE REGIONS
THAT THE NUMBER OF FOR EXAMPLE
OF PHYSIO THERAPISTS OR MEDICAL
DOCTORS ARE QUITE LOW SO SKILLED
THERAPIST AND LOW DOCTOR RATIOS
MAKE THIS MORE IMPORTANT WE
REALLY THINK HOW WE CAN MAKE
THIS TECHNOLOGY AVAILABLE
ESPECIALLY SINCE IT'S PROMISING.
THE WORLD HEALTH ORGANIZATION
PUT OUT THIS REHABILITATION 2030
CALL FOR ACTION AND THEY SAY
THERE'S A CLEAR MISMATCH BETWEEN
THE GLOBAL NEED FOR REHAB AND
THE AVAILABILITY OF SERVICES.
ESSENTIALLY MORE NEEDS TO BE
DONE.
OUR ASPIRATION IS WE'VE BECOME A
PART OF STRATEGY OF CARE FROM A
PUBLIC HEALTH PERSPECTIVE IT
SHOULD BE UP THERE WITH
PREVENTATIVE AND CURATIVE CARE.
ANOTHER POINT IS THAT ANOTHER
STUDY DONE FROM SOME COLLEAGUES
IN NIGERIA LOOKED AT SOLUTIONS
FOR STROKE RECOVERY, IMPROVED
QUALITY OF LIFE IN LOW AND
MIDDLE-INCOME COUNTRIES AND SAID
ROBOTS ARE NOT AFFORDABLE
DESPITE THEIR HIGH COST BUT THE
LIKELY ADVANTAGE IS THEY WOULD
AUTOMATE INTERVENTIONS FOR ROBOT
THERAPY AND THEREFORE BRIDGE THE
GAP IN SHORTAGE OF REHAB
PROFESSIONALS IN TERMS OF TIMES
AND EFFORT.
SO HOW DO WE BUILD AFFORDABLE
ROBOTS THAT WOULD MAKE
REHABILITATION MORE ACCESSIBLE
BUT ALSO SERVE THE PEOPLE ON THE
GROUND, THE CLINICIANS ON THE
GROUND?
SO MY POINT IS HOW DO WE MAKE
THEM MORE AFFORDABLE?
AND WHAT DO WE MEAN BY
AFFORDABLE TO THE EXTENT TO
WHICH WHEN YOU'RE IN THAT
ENVIRONMENT YOU CAN AFFORD A
TECHNOLOGY THAT IS ABLE TO BE
THAT IS COST EFFECTIVE WITHIN
THAT ENVIRONMENT.
WHAT DO I MEAN?
ONE OF THE WORLD HEALTH
ORGANIZATION TALKED ABOUT COST
EFFECTIVE IN TERMS OF
REHABILITATION STRATEGIES AND
THEY SAY SOMETHING IS COST
EFFECTIVE IF IT IS LESS THAN
HIGHLY COST EFFECTIVE IF IT'S
LESS THAN ONE GDP PER CAPITA AND
VERY COST EFFECTIVE IS BETWEEN 1
AND 3 GDP AND WE LOOK AT THE GDP
AND WE CAN SUPPORT MORE
EXPENSIVE SYSTEMS BUT WHEN WE
LOOK AT BOTSWANA AND I DO GLOBAL
WORK AND ALSO IN JAMAICA AND
MEXICO, THE GDP IS MUCH LESS
THAN WHAT WE SEE IN THE U.S.
SO WHEN WE THINK ABOUT
AFFORDABLE TECHNOLOGIES APPLIED
IN THAT PARTICULAR ENVIRONMENT
WE NEED TO BE A LOT MORE -- WE
NEED TO THINK HOW CAN WE BE
CHEAPER AND DELIVER GOOD CARE AT
MUCH LESS OF A PRICE.
MYSELF AND COLLEAGUES DID A
REVIEW ABOUT AFFORDABLE ROBOTS
FOR UPPER EXTREMITY REHAB IN
DEVELOPING COUNTRIES AND WE SAW
THEY WERE OUT THERE AND THERE
WERE SOME POTENTIAL STRATEGIES
THAT COULD BE USED AND ONE IS
MORE LOW-COST ROBOTICS AND
MEGATRONIC SYSTEMS AND USE
ROBOTS WITH 3-D PRINTING, SOFT
ROBOTS, FOUND MATERIALS SO WE
CAN UTILIZE WHAT'S IN COUNTRY.
ANOTHER IDEA MIGHT BE TO USE
MULTIPLE ROBOTS THAT ARE LOWER
DEGREES OF FREEDOM BUT COMING
TOGETHER TO DO CARE AND
CAPITALIZE ON LOCAL
MANUFACTURING AND RESOURCES.
THIS IS AN EXAMPLE OF SOMETHING
WE DID WITH MEXICO WHERE WE USED
A MEGATRONIC SYSTEM THAT WAS A
FORCE FEEDBACK REEL AND WHAT WE
DID THAT WAS INTERESTING IN
TERMS EF THE IDEA OF MULTI
PURPOSE USE AND SEVERAL DEVICES
OR TECHNOLOGY SYSTEMS USED
TOGETHER AND THE CARE ALMOST
LIKE A CIRCUIT TRAINING WHERE WE
HAVE THE STROKE SURVIVORS GOING
FROM ONE TO ANOTHER STATION IN
ORDER TO GET THE TYPE OF
COMPREHENSIVE CARE THAT IS
NEEDED.
THAT LED TO THINKING ABOUT THE
REHAB GYM IDEA AND USING SIMPLE
ROBOTS TOGETHER IN A GROUP THEY
CAN THEN LEAD TO MORE
COMPREHENSIVE SERVICE.
WE ACTUALLY ENDED UP LEARNING
FROM OUR EXPERIENCE IN MEXICO
AND THIS LED US TO THE ROBOT WE
BUILT THAT IS ABLE TO TRAIN
PEOPLE WITH MODERATE AND LOW
IMPAIRMENT IN TERMS OF MOTOR IN
A GAMING ENVIRONMENT SO PEOPLE
ARE ABLE TO TRAINING THE UPPER
EXTREMITY.
IT'S ONE DEGREE OF FREEDOM BUT
YOU CAN RECONFIGURE THE ROBOT IN
DIFFERENT POSITION TO GET MORE
OF A COMPREHENSIVE WORKOUT OF
THE UPPER EXTREMITY.
ANOTHER CASE STUDY OF HOW WE'RE
THINKING OF USING AFFORDABLE
ROBOTS WE ARE LOOKING AT THE USE
FOR ASSESSMENT PURPOSES
ASSESSING MOTOR AND COGNITIVE
IMPAIRMENT IS NOT BEING DONE
OFTEN ESPECIALLY IN LOW RESOURCE
SETTINGS IT'S VERY DIFFICULT TO
DO.
SO HOW DO WE LOOK TO USING
AFFORDABLE ROBOTS TO SUPPORT
THAT.
THIS IS A CASE STUDY OF
DEVELOPING INTERESTING AND NOVEL
COGNITIVE AND MOTOR ASSESSMENTS
THAT CAN BE DONE WITH ROBOTS TO
BE ABLE TO PROVIDE FEEDBACK TO
CLINICIANS IN WHERE THEY SHOULD
START IN TERMS OF TREATMENT OF A
STROKE SURVIVOR OR SOMEONE WITH
HIV FOR EXAMPLE.
THIS IS ANOTHER REALLY NOVEL USE
OF ROBOTIC SYSTEMS.
IN TERMS OF TAKING IT FURTHER,
WE'VE DONE SOME WORK IN BOTSWANA
WHERE WE HAVE THE ONE-DEGREE OF
FREEDOM SYSTEMS AND PUT THEM
TOGETHER FOR INSTANCE TWO ROBOTS
AND TWO WORKING TOGETHER ONE TO
BE ASSESSED AND ONE IN THERAPY
WITH ONE PATIENT OR ONE
CLINICIAN SEEING THE OPERATION.
IE, OUR GOAL IS HOW CAN WE USE
THE AFFORDABLE ROBOTS TO DO ONE
CLINICIAN TO DO MORE WORK WITH
THE POPULATION THEY'RE SEEING.
SO SOME OF THE THINGS WE LEARNED
TO REINFORCE FROM IN TERMS OF
THE AFFORDABILITY STRATEGIES
USING IN-COUNTRY LABOR, USING
MATERIALS AND SUPPLIES THAT ARE
AVAILABLE IN COUNTRY.
THINKING ABOUT THE SIMPLEST
ROBOTS AND LAYERING THEM ON TO
THE SYSTEM FOR RECONFIGURABILITY
FOR THEM TO DO THE JOB OF THE
MORE COMPLEX ROBOTIC SYSTEMS
THAT ARE IN HIGHER INCOME
COUNTRIES.
WE'VE ALSO LOOKED AT THIS ISSUE
IN TERMS OF SOCIAL ROBOTS
THINKING ABOUT USING ROBOTS AND
MORE AFFORDABLE ROBOTS IN TERMS
OF REMOTE AND TELEPRESENCE AND
BEING ABLE TO PROVIDE THIS
ROBOT, FOR EXAMPLE, IN A LOW
RESOURCE SETTING WHILE THE
CLINICIAN MIGHT NOT BE
CO-LOCATED WITH THE ROBOT SO THE
CLINICIAN IS IN THE RURAL OR
YOU'RE -- URBAN SPACE AND THE
ROBOTS ARE SUPPLEMENTING IN THE
PRIMARY CARE SPACES.
WE'RE ALSO THINKING ABOUT THIS
IN TERMS OF INFANTS.
THINKING ABOUT AFFORDABLE
MEGATRONIC TOYS THAT CAN BE USED
OUTSIDE THE HOSPITAL SETTINGS BY
CLINICIANS AND PARENTS AND THAT
INFORMATION GETS FEDBACK.
HOW DO WE USE MOBILE HEALTH
TECHNOLOGY AND THESE TYPE OF
TECHNOLOGY TO CAPTURE
INFORMATION ABOUT WHAT PEOPLE
ARE DOING AND THEN PROVIDE THIS
INFORMATION TO THE CLINICIAN SO
THEY CAN ASSESS AND TREAT
WITHOUT NEEDING AS MANY
CLINICIANS THAT ARE OBVIOUSLY
NOT AVAILABLE IN THE
LOW-RESOURCE SETTING.
SO I WANT TO STOP BY SAYING
HERE'S SOME OF THE GUIDELINES
WE'VE ESSENTIALLY THINK THAT IN
THE FUTURE WE NEED TO BE
THINKING ABOUT.
THAT WE WANT TO GET THESE ROBOTS
INTO LOW-RESOURCE SETTINGS,
LOW-MIDDLE INCOME COUNTRY AND
SHOULD BE AFFORDABLE AND SHOULD
NOT COMPROMISE ON EFFECTIVENESS
AND SHOULD BE COMMUNITY BASED.
WE SHOULDN'T ALWAYS THINK OF
ONE-ON-ONE STRATEGIES BUT CAN WE
GET MORE GROUP TYPE THERAPY
HAPPENING?
THEY SHOULD BE APPROPRIATE TO
THE SETTING AND WE SHOULD BE
THINKING HOW TO BUILD CAPACITY
IN WHATEVER SETTINGS WE ARE
ESPECIALLY IN RURAL RESOURCED
SETTINGS WHERE MAYBE THE ACCESS
OF FULL EXPERTS ARE NOT ALWAYS
AVAILABLE.
I WANT TO THANK THE SPONSORS AND
NIH, ETCETERA AND I'LL STOP
THERE.
>>THANK YOU.
WE HAVE EIGHT MINUTES BY MY
CLOCK.
SO I'M GOING TO TRY TO GET ONE
QUESTION TO EACH OF OUR
SPEAKERS.
SINCE I'M THE MODERATOR, I
GUESS TO PICK THE QUESTION.
JUDY, I THINK WE'RE FAMILIAR
WITH RACISM AND SEXISM BUT I
DON'T THINK WE'RE FAMILIAR WITH
ABLISM.
CAN YOU TALK A LITTLE BIT ABOUT
WHAT NICHD CAN DO TO DRAW MORE
ATTENTION TO ABLISM?
>>WELL, THINK THE WORD NEEDS TO
BE USED.
I THINK WE NEED TO HAVE
DISCUSSIONS ABOUT WHAT ABLISM IS
IN A MORE SPECIFIC WAY.
THOSE PEOPLE LIKE MYSELF AND
OTHERS WHO EXPERIENCE IT NEED ON
THE ONES LEADING THE DISCUSSION.
AND I FEEL LIKE IT'S VERY
INTERESTING BECAUSE TERMINOLOGY
AND DISABILITY IS SOMETHING
WE'RE GRAPPLING WITH AND I
APPRECIATED WHEN YOU SAID WE'LL
USE THE TERM PEOPLE WITH
DISABILITIES AND DISABLED PEOPLE
INTERCHANGEABLY AND A RESPECT
THAT A LOT BECAUSE I AM A
DISABLED PERSON LANGUAGE USER
BUT I RESPECT PEOPLE WHO USE
PEOPLE WITH DISABILITIES.
THE REASON I SAY IT'S IMPORTANT
IS BECAUSE WE'RE MORE ACCEPTING
AS A SOCIETY THAT RACISM EXISTS,
THAT HOMOPHOBIA EXISTS AND
SEXISM EXISTS BUT WE'RE NOT
REALLY ACCEPTING OF THE FACT
THAT DISCRIMINATION EXISTS
AGAINST DISABLED PEOPLE.
MANY PEOPLE STILL FEEL LIKE, OH,
THEY DIDN'T MEAN IT, THEY DIDN'T
KNOW IT, THEY DIDN'T UNDERSTAND
IT.
AND THEY SOFT PEDAL IT.
A DISCUSSION AROUND ABLISM WHICH
WAS HANDICAPISM WHEN I WAS
YOUNGER IS HOW I BELIEVE ENABLES
PEOPLE WITH THE BREADTH OF
DISABILITIES THAT EXIST TO ALSO
BE ABLE TO DISCUSS IN A MORE IN
DEPTH WAY THE TYPES OF
EXPERIENCES THEY HAVE AND HOW
PEOPLE EXPERIENCE MANY OF THESE
SITUATIONS IN A WAY WHICH IS
DEMEANING AND REPRESSES PEOPLE'S
ABILITY TO BRING THEIR WHOLE
SELF TO THE TABLE.
>>THANK YOU.
OKAY, CLAIRE.
SO I'M TRYING TO THINK OF THE
IMPLICATIONS FOR TREATMENT FOR
YOUR DISCOVERIES ABOUT
INFLAMMATORY RESPONSES TO NERVE
AXON INJURY.
SO ARE THERE SYSTEMIC
TREATMENTS, ANTI-INFLAMMATORIES
WE COULD BE USING MORE GENERALLY
OR DOES IT NEED TO BE TARGETED
TO THE SPECIFIC NEURONS?
>>THAT'S A GREAT QUESTION.
I THINK THE ANSWER IS WE NEED TO
FIGURE OUT WHAT THOSE
INFLAMMATORY CELLS ARE DOING
FIRST BEFORE I CAN REALLY ANSWER
THE QUESTION.
IT'S INTERESTING TO SEE THIS
HAPPENS IN A VERY STEREOTYPICAL
WAY BUT WE ACTUALLY DON'T REALLY
KNOW EXACTLY WHAT THE
CONSEQUENCES ARE IN TERMS OF
WHAT THE MICROGLIA ARE DOING.
WE KNOW THEY COME IN A WAVE AND
THEN GO AWAY.
MY SENSE IS THEY'RE DOING
SOMETHING ACUTELY AND WOULD BE
USEFUL TO TARGET IN THAT WINDOW
BUT YOU HAVE TO KNOW -- I GUESS
IN TERMS OF APPLICATIONS, THE
WAY I THINK ABOUT THE POTENTIAL
USE FOR THIS IT WOULD DEFINITELY
BE IN THE CONTEXT OF A TRAUMATIC
INJURY OR SOMETHING WHERE YOU
KNOW WHEN THE INJURY HAPPENED
AND LESS SO IN THE CONTEXT OF A
CHRONIC CONDITION.
I HOPE THAT ADDRESSES YOUR
QUESTION.
>>THANK YOU.
AND JOHN, THIS IS A QUESTION
FROM THE AUDIENCE, YOUR WORK
SEEMS TO HAVE IMPLICATIONS FOR
THE VERY DEFINITION OF A
PSYCHIATRIC DISORDER DO YOU
THINK DFM SHOULD BE REORGANIZED?
DON'T THEY DO THAT EVERY SO
OFTEN AND IF SO HOW DO YOU
RECOMMEND GOING ABOUT IT?
>>I LOVE THIS QUESTION BECAUSE
ONE OF THE THINGS THAT HAS BEEN
LEARNED ABOUT MOST PSYCHIATRIC
CONDITIONS OF ALL PEOPLE IS THAT
THERE ARE A RELATIVELY FINITE
NUMBER OF DEVELOPMENT
PSYCHIATRIC LIABILITIES THAT
CONFER RISK FOR MULTIPLE
DISORDERS AND CONFER A LOT OF
RISK.
FOR EXAMPLE, FUNDAMENTAL TRAITS
THAT HAVE BEEN REFERRED TO IN A
NUMBER OF THE PRIOR TALKS SUCH
AS THE DIFFICULTY WITH
REGULATING EMOTION, THE
PRONENESS TO IMPULSIVITY OR
ANXIETY-RELATED TRAITS, THESE
CROSS OVER ALMOST ALL THE
DIFFERENT NEUROPSYCH PSYCHPSYCH
NEUROPSYCHIATRIC CHARACTERISTICS
OF PEOPLE AND THE SAME WILL BE
POSSIBLE FOR MOST
NEUROPSYCHIATRIC DISORDERS OF
PEOPLE WITH THE OTHER POINT TO
MAKE WITH THE PROTOTYPIBLE
SCHIZOPHRENIA HAS SHOWN AT THE
FAR END OF THAT SYNDROME YOU
START TO SEE THE EMERGENCE OF
WHAT ARE VERY PRONOUNCED
STOCHASTIC AFFECTS ON
DEVELOPMENT WHICH IN
SCHIZOPHRENIA TRANSLATES TO THE
CONCORDANCE RATE ONLY BE 45%.
THINK ABOUT THAT.
HOW ON EARTH WITH THE CAUSATION
OF A CONDITION IN ONE IDENTICAL
TWIN REARED TOGETHER ONLY CAUSE
IT 45% OF THE TIME?
I THINK WHEN WE START TO THINK
ABOUT NEUROPSYCHIATRIC
CONDITIONS AS ENGENDERED BY
DEVELOPMENT A SHORTER LIST OF
DEVELOPMENT LIABILITIES THAN THE
THOUSAND DS DIAGNOSES AVAILABLE
AND THE SIGNATURE IN HUMAN
BEHAVIORAL TRAITS THAT ARE
ASSOCIATED WITH IMPAIRMENT FOR A
HIGH LEVEL OF BURDEN IS THIS
INFLUENCE OF STOCHASTIC EFFECTS,
WE CAN START TO UNDERSTAND IN A
DIFFERENT WAY HOW TO DRAW THE
LINES AND UNDERSTAND WHEN DOES A
VARIATION OF HUMAN BEHAVIOR
THAT'S BEEN INHERITED TURN INTO
WHAT WE WOULD CALL SOMETHING
THAT IS IMPAIRING ENOUGH OR
DIFFICULT ENOUGH FOR ADAPTATION
TO BE CALLED A DIAGNOSED
CONDITION.
>>THANK YOU SO MUCH TO OUR
PANEL.
>>RESEARCHERS WHO STUDY HUMAN
DEVELOPMENT RELY ON ANIMAL
MODELS LIKE ZEBRAFISH TO GAIN
INSIGHT IN GROWTH AND HOME.
THEY HAVE AN ADVANTAGE OVER
OTHER ANIMAL MODELS BECAUSE THEY
DEVELOP QUICKLY WITHIN A FEW
DAYS.
THEY'RE ALSO TRANSPARENT
ENABLING RESEARCHERS TO
VISUALIZE DEVELOPMENT IN REAL
TIME.
A FERTILIZED ZEBRAFISH EGG HAS
THE SINGLE CELL, YOKE AND THE
PROTECTIVE MEMBRANE.
AFTER THE FIRST CELL DIVISION
CELLS CONTINUE TO DIVIDE SIM ET
LIKELY AND AFTER THE EMBRYO'S
GENETIC INSTRUCTION TAKES OVER
AND THE NEXT STEP IS WHERE THE
EMBRYO FORMS THREE DISTINCT
LAYERS TO DEVELOP INTO DIFFERENT
TYPES OF TISSUE.
THEN THE EYE DEVELOPS.
LATER THE EMBRYO MOVES FOR THE
FIRST TIME.
PIGMENT CELLS PROVIDE COLOR FORM
IN THE EYES AND TRUNK OF THE
BODY.
THE HEART BEATS AND BLOOD CELLS
MOVE THROUGH BLOOD VESSELS.
NOW THE EMBRYO IS READY TO HATCH
IN THREE MORE DAYS AFTER THE
YOKE IS ABSORBED THE LARVAE WILL
BEGIN TO EAT.
HI, THIS IS CONGRESSWOMAN JAMIE
HERRERA BUTLER.
THANK YOU FOR INVITING MANY TO
SPEAK FOR THE EUNICE KENNEDY
SHRIVER INSTITUTE OF HEALTH AND
HUMAN DEVELOPMENT.
I'VE WORKED TO PRIORITIZE ISSUES
IMPORTANT TO THE NATIONAL
INSTITUTE OF CHILD HEALTH AND
CHILD DEVELOPMENT.
IMPROVING MATERNAL AND CHILD
HEALTH IS IMPORTANT TO ME.
ONE AREA WITHIN MATERNAL HEALTH
THAT'S BEEN A MAJOR FOCUS IS
COMBATTING THE GROWING MATERNAL
MORTALITY CRISIS.
IN 2018 I WAS ABLE TO GET
LANDMARK LEGISLATION SIGNED INTO
LAW CALLED THE PREVENTING
MATERNAL DEATHS ACT.
THIS WAS A CRUCIAL FIRST STEP IN
HELPING BEGIN TO UNDERSTAND THE
EPIDEMIC OF MATERNAL MORTALITY
THAT'S PLAGUING OUR NATION.
OUR WORK IN THE MATERNITY CARE
CAUCUS LED TO OTHER ADVANCES TO
PROMOTE WOMEN'S HEALTH.
ONE ISSUE IS RELATED TO
MATERNITY RELATED MENTAL HEALTH
CHALLENGES.
PARTICULARLY MOMS WITH
POSTPARTUM DEPRESSION TO HELP
COMBAT THE ISSUE THE CAUCUS WAS
ABLE TO ADVANCE THE FORMATION OF
THE FIRST EVER MATERNAL MENTAL
HEALTH HOT LIGHT -- HOT LINE.
THERE'S VOICE AND TECH SUPPORT
TO THOSE IN MENTAL HEALTH
CRISIS.
AND ON THE CHILDREN'S HEALTH
SIDE OF THE COIN I'VE WORKED TO
ENSURE HIGH QUALITY AFFORDABLE
HEALTH CARE IS AVAILABLE TO
CHILDREN ACROSS THE NATION.
IN 2019, MY BILL THE ADVANCING
CARE FOR EXCEPTIONAL KIDS ACT AS
A WAY TO HELP CHILDREN SUFFERING
FROM CANCER AND HEART TREATMENTS
AND THE ACE KIDS ACT HELPED
IMPROVE ACCESS TO FACILITIES.
I'M ALSO ADVANCING PRIORITIES
RELATE TO HISPANIC HEALTH.
I WAS PROUD WHEN OUR MATERNAL
CARE CAUCUS WAS ABLE TO SOLVE A
LARGE ISSUE FOR HISPANIC
MATERNAL CARE.
FOR CENTURIYIES CORN MASA STAPL
LACKED FOLIC ACID.
WE FOUGHT TO HAVE IT ADDED TO
PREVENT LIFE-THREATENING BIRTH
DEFECT.
I KNOW THERE'S SO MUCH MORE WORK
TO BE DONE AND VALUE THE WORK
YOU'RE DOING TO MAKE HEALTH CARE
MORE ACCESSIBLE TO MORE
AMERICANS.
THANK YOU FOR INVITING KNOW
SPEAK WITH YOU TODAY.
I HOPE YOU ALL HAVE A SUCCESSFUL
AND WONDERFUL EVENING.
>>OUR FINAL SESSION ADDRESS
HOW'S WE'RE CULTIVATING THE NEXT
GENERATION OF RESEARCHERS.
OUR MODERATOR IS DR. UNA GREWAL
OF POPULATION HEALTH RESEARCH IN
THE NICHD DIVISION OF INTRAMURAL
RESEARCH.
>>GOOD AFTERNOON, EVERYONE.
AND WELCOME TO THE FINAL PANEL
OF THE DAY.
I'M UNA GREWAL AND I WILL HAVE
PRESENTATIONS UNDERTAKING THE
ACADEMIC TRANSITION AND THERE'LL
BE AN OPPORTUNITY TO ASK
QUESTIONS.
DURING THE PANEL, PLEASE SUBMIT
ANY QUESTIONS TO THE E-MAIL
ADDRESS NICHDPRESS@MAIL.NIH DOT
-GOV.
THE FIRST SPEAKER IS AISHA
BURTON IN THE DIVISION OF
INTRAMURAL RESEARCH.
DR. BURTON WAS RECENTLY AWARD
THE NINDS POST-DOCTORAL RESEARCH
TRAINING AWARD AND LISTED IN
CELL MENTOR'S LIST OF 1,000
INSPIRING BLACK SCIENTISTS IN
AMERICA.
IN ADDITION TO HER RESEARCH, SHE
MENTOR AS A POST-BAC FELLOW AND
TEACHES AS AN ADJUNCT INSTRUCTOR
AT RECEIVED HER B.A. IN CHICAGO
AND COMPLETED HER DOCTORAL WORK
ON BACTERIAL TRANSCRIPTION
FACTOR AT INDIANA UNIVERSITY SO
WITHOUT FURTHER DO JOIN ME IN
WELCOMING DR. AISHA BURTON.
>>THANK YOU SO MUCH FOR THAT
INTRODUCTION AND GOOD AFTERNOON,
EVERYONE.
IT'S GREAT THAT YOU ARE HERE
WITH US TODAY.
AND SO HOPEFULLY YOU CAN SEE MY
PRESENTATION THAT WE HAVE FOR
YOU ALL.
SO WE'LL GET INTO MY RESEARCH
JOURNEY.
I START AT NORTHWESTERN
UNIVERSITY WHERE I GOT MY FIRST
OPPORTUNITY.
I WAS FRESHLY OUT OF HIGH SCHOOL
AND DIDN'T KNOW WHAT RESEARCH
WAS AND YOU SAID RESEARCH LAB I
THOUGHT OF MAINLY OLDER WHITE
MEN IN LAB COATS DOING SCIENCE.
SO I HAD THIS UNIQUE OPPORTUNITY
TO GO INTO THIS LAB AND
COMMUNICATE FROM THE SOUTH SIDE
OF THE CITY INTO DOWNTOWN
CHICAGO.
AND I CALLED MY MOM ONE DAY AND
SAID I WORKED AND SHE TOLD ME
NOT TO BRING IT HOME AND IT'S
ONE POINT WHERE I CAN EDUCATE
PARENTS ABOUT E. COLI THAT'S A
TOOL ON RESEARCH AND NOT JUST
WHAT YOU HEAR ONLINE OR ON TV.
WITH THAT I STILL WAS INTERESTED
IN RESEARCH AND A WENT TO
UNIVERSITY OF ILLINOIS AT
CHICAGO AND I MAJORED IN
CHEMISTRY AND MINERED --
MINORED IN BIOLOGY.
I HAD EXPERIENCE IN A LAB AND I
SMELLED LIKE BREAD EVERY DAY AND
AN APPLIED TO GRADUATE SCHOOL MY
FIRST TIME AS A SENIOR IN
COLLEGE AND I DIDN'T GET IT AND
WAS DEVASTATED BUT APPLIED TO DO
THE PROGRAM FUNDED BY NINDS
ACROSS THE NATION AND SO THERE
ARE POST-BACS HERE AS THE NIH
CAMPUS BUT ALSO AROUND THE
UNITED STATES.
SO I MENTIONED I DID A SHORT
STINT AT THE UNIVERSITY OF
CHICAGO AS WELL FOR RESEARCH.
SO MY QUESTION I TOOK WITH ME
FROM MY UNDERGRADUATE EDUCATION
WAS HOW DO BACTERIA INTERACT
WITH THEIR ENVIRONMENT.
I WAS INTERESTED IN THAT AND
WHEN I WENT AND DID MY POST-BAC
LAUREATE RESEARCH I WENT TO THE
LAB OF JUDY WONG WHERE I WAS
ABLE TO STUDY A TYPE OF
BACTERIA.
IT'S COOL TO WORK WITH.
YOU HAVE TO WORK WITH ANAEROBIC
CHAMBERS TO KEEP OXYGEN AWAY.
AND FROM THEIR LAB I HAD THE
QUESTION OF HOW BACTERIA
INTERACT WITH THEIR ENVIRONMENT.
THE WALL LAB REALLY SOLIDIFY MY
INTEREST FOR RESEARCH AND SO
WITH THAT I APPLIED TO GRADUATE
SCHOOL AND STAYED IN THE MIDWEST
AS YOU CAN SEE FROM MY GRAPH AND
WENT TO INDIANA UNIVERSITY.
I DID MY DISSERTATION WORK IN
THE LAB OF DR. KEARNS AND WAS
NOT MY ORIGINAL LAB SO SOME
TRAINEES MAY BE SAYING WHAT
HAPPENED?
I LEFT LAB AND I KNOW IT'S TABOO
TO LEFT LAB BUT I'M HERE TO SAY
IT DOES HAPPEN AND PROBABLY MORE
COMMON THAN YOU KNOW.
IN HIS LAB I WAS WORKING ON AN
ANCESTRAL STRAIN AND YOU MAY
WONDER WHAT IS THAT?
I DON'T HAVE THE SLIDE, I'M
SORRY, BUT THIS ORGANISM CAN
TAKE UP DNA USUALLY INTEREST THE
ENVIRONMENT BUT THE ANCESTRAL
STRAIN WHICH I'M SHOWING HAS A
LARGE PLASMID THAT PREVENTS IT
FROM BEING ABLE TO TAKE UP DNA
FROM THE ENVIRONMENT.
SINCE I DID MY DISSERTATION WORK
ON THE PLASMID I WAS ABLE TO
FIND THE SIGMA FACTOR CAN CAUSE
THE CELL TO DIE WHEN IT'S
ACTIVATED.
AND THEN I MOVED ALL THE WAY TO
THE EAST COAST TO DO MY
POST-DOCTORAL WORK IN THE LAB OF
DR. STEWART.
AND IN HER LAB I STUDIED A
PROTEIN AND THEY MAY BE PART OF
OTHER LARGER PROTEINS AND
RESEARCH RECENTLY HAS BEEN
SHOWING THEY'RE ASSOCIATED WITH
AMINO ACIDS AND THERE'S 59 AMINO
ACIDS AND AFFECTS HOW ATRB
BEHAVES IN THE CELLS AND MAKES
THE BACTERIA MORE RESISTANT TO
OTHER ANTIBIOTICS.
AND THE EUKARYOTIC CELLS CAN BE
INVOLVED IN OTHER DISEASE.
MY QUESTION IN THE LAB IS WHAT
OTHER SMALL PROTEINS ARE PRESENT
IN BACTERIA AND WHAT ROLE DO
THEY PLAY IN THE CELL.
SO THIS IS MY LAB I'M DOING MY
RESEARCH IN BUT I DID WANT TO
TOUCH ON BRIEFLY ABOUT MY
MENTORS.
I DIDN'T TALK ABOUT THE
MENTORSHIP.
IT WAS INSTRUMENTAL IN GETTING
MY DEGREE.
HE TRANSITIONED FROM THE LAB AND
SUPPORTED ME AS A MINORITY
STUDENT WHEN THERE WERE THINGS
HAPPENING IN THE WORLD THAT
AFFECTED BLACK STUDENTS.
IF YOU ALL REMEMBER MANY BLACK
PEOPLE WERE GETTING KILLED HE
WOULD TAKE ME IN HIS OFFICE AND
TALK TO ME ABOUT WHAT'S GOING ON
IN THE WORLD AND SIT FOR AN HOUR
AND TWO JUST TALKING AND HE SAID
IF YOU NEED TO LEAVE, THAT'S
FINE.
IF YOU WANT TO STAY, THAT'S
FINE.
HE WAS SENSITIVE TO MY NEEDS AS
A STUDENT BECAUSE IF I'M NOT
OKAY, MY SCIENCE IS NOT GOING TO
BE OKAY.
AND THEN WITH DR. STEWART, SHE
IS A CHAMPION FOR ALL OF HER
STUDENTS.
SHE WANTS US TO DO WELL AND THE
SIX MONTHS I STARTED MY POSTDOC
DR. STORZ ALLOWED KNOW EXPLORE
THE DIFFERENT AREAS I COULD TAKE
MY CAREER AND HAD THE UNIQUE
OPPORTUNITY TO TEACH AT THE
LOCAL COMMUNITY COLLEGE.
SO DR. STORZ DIDN'T SHY AWAY
FROM SAYING YES.
SHE COULD HAVE SAID NO, FOCUS ON
YOUR RESEARCH BUT SHE KNEW
TEACHING WAS VERY IMPORTANT TO
ME AND SHE WAS FLEXIBLE IN HER
MENTORSHIP TO ALLOW ME TO TAKE
THE OPPORTUNITY THAT WAS ALSO
FURTHER MY OWN CAREER.
THANK YOU ALL FOR LISTENING.
>>THANK YOU SO MUCH FOR THAT
DR. BURTON.
OUR NEXT SPEAKER IS DR. SOUTIK
GHOSAL.
AN ASSISTANT PROFESSOR IN BIO
STATISTICS AT THE UNIVERSITY OF
VIRGINIA.
HE IS APPLYING THE RESEARCH IN
PEDIATRICS, OBSTETRICS AND
GYNECOLOGY THAT WAS A FOCUS
DURING HIS POST-DOCTORAL
FELLOWSHIP IN THE BIO STATISTICS
AND BIOINFORMATICS BRANCH IN THE
DIVISION OF POPULATION HEALTH AT
NICHD.
HE RECEIVED HIS BACHELOR'S AND
MASTER'S DEGREE IN STATISTICS IN
INDIA AND BIO STATISTICS FROM
THE UNIVERSITY OF LOUISVILLE.
PLEASE WELCOME MY FORMER
COLLEAGUE, DR. SOUTIK GHOSAL.
>>THANK YOU SO MUCH.
THANK YOU, EVERYONE.
THANK YOU FOR BEING PRESENT
VIRTUALLY TO CELEBRATE THE 60th
ANNIVERSARY OF THE NICHD.
I'M BEYOND DELIGHTED AND HONORED
TO BE PART OF THE PANEL ALONG
WITH THE WONDERFUL PANELISTS AND
SHARE MY STORY WITH ALL OF YOU.
AND A SPECIAL THANKS TO DR
DR. GREWAL FOR MODERATING THE
SESSION.
I HAVE A BRIEF ROAD MAP OF THE
LAST 30 YEARS OF MY CAREER WITH
THE STOPS AT DIFFERENT
BUILDINGS, IF YOU WILL.
A LITTLE DISCLAIMER I DON'T HAVE
A STRONG UNDERSTANDING RELATED
TO THE DESIGNS OF THIS BUILDING
SO PLEASE DONE GET CONFUSED BY
THE STRANGE TITLE.
I JUST HOPE TO SHARE SOME OF MY
MEMORIES WITH TODAY WHICH
HAPPENED AT ALL THESE DIFFERENT
BUILDINGS AND SHAPED MY CAREER
AND MY LIFE AND THE PRESENT THAT
IS HAPPENING WITH ME RIGHT NOW.
IN THE SINGLE PAGE YOU CAN SEE
THE ROLES I'VE TAKEN IN THE
DIFFERENT PHASES OF MY LIFE AND
MORE IMPORTANTLY I HOPE YOU CAN
CLEARLY SEE ALL THE IMAGES OF
THE INSTITUTIONS I'VE BEEN AT IN
THE SINGLE SLIDE WHICH WAS MY
INTENTION AND NOT LACK OF
PRESENTATION SKILLS, I ASSURE
YOU.
I PUT UP THE IMAGES OF THE
BUILDINGS WITH THE HOPE AT LEAST
SOME OF YOU CAN IDENTIFY ONE
BUILDING IN THIS SLIDE WHICH IS
THE THIRD AND FOURTH BUILDING
AND YES I'M TALKING ABOUT THE
NICHD BUILDING AT 6710B
ROCKVILLE DRIVE AND IT'S BEEN A
COMMON FACTOR AMONG US AND I OWE
A LOT TO THIS BUILDING.
I MET THE PEOPLE IN IT AND I
HOPE YOU UNDERSTAND THE
SYMBOLISM.
I'M CURRENTLY ASSISTANT
PROFESSOR IN THE PUBLIC HEALTH
SCIENCES DEPARTMENT AT THE
UNIVERSITY OF VIRGINIA.
I HAVE A BACKGROUND IN BIO
STATISTICS AND AT THE CURRENT
PHASE OF MY CAREER I THINK HOW
GRATEFUL I AM TO ALL THE PEOPLE
WHO I HAVE MET IN ALL THE
BUILDINGS AND HOW ALL TOOK A
PART IN SHAPING MY CAREER.
STRANGELY, I DON'T KNOW WHERE I
WOULD HAVE BEEN WITHOUT THEM BUT
LET'S KEEP THAT OTHER SIDE FOR A
DIFFERENT OCCASION.
THE PHASES OF MY LIFE THAT I'VE
LISTED HERE AND ALSO THE ONES I
COULDN'T FIT HERE HAVE VALUABLE
LESSONS WHICH I WANT TO SHARE
WITH YOU.
SO MY VERY FIRST INTRODUCTION TO
STATISTICS WAS VERY STRANGE.
WHICH HAPPENED DURING MY HIGH
SCHOOL AT INDIA AND MY SCHOOL WE
HAD TO TAKE AN ELECTED COURSE AS
PART OF OUR CRICK COLUMN AND THE
MOST POPULAR COURSES WERE
BIOLOGY AND COMPUTER SCIENCES,
WHICH MOST THE STUDENTS, MY
FRIENDS TOOK.
A LOT OF US WERE NOT VERY FOND
OF BIOLOGY AT THAT POINT IN
TIME.
POSSIBLY MAYBE WE DIDN'T LIKE
THE WAY IT WAS TAUGHT BUT WHAT
WE WANTED AS AN ELECTIVE IS
SOMETHING WE DON'T HAVE TO STUDY
A LOT.
SO ONE OF MY FRIENDS MENTIONED
STATISTICS WHICH A NEW SUBJECT
TO US WAS OFFERED AND POSSIBLY
COULD BE AN EASY ALTERNATIVE TO
PICK UP BECAUSE IT MAY BE NOT A
LOT OF WORK A TYPICAL TEENAGER
MENTALITY THAT THE POINT IN
TIME.
WE DECIDED TO TAKE THAT AND FOR
SEVERAL WEEKS THERE WERE
MATHEMATICS AND I'M PRETTY SURE
WHERE WE TOOK STATISTICS AND ANY
COURSE OF STATISTICS WILL KNOW
AT FIRST THEY TALK ABOUT DATA,
TYPES OF DATA, HISTOGRAMS AND
STUFF LIKE THAT.
SO THAT WAS NOT A PROBLEM BUT
THE PROBLEM WAS THE STRESS THAT
WE HAD TO TAKE TO ILLUSTRATE TO
OTHERS WHAT IS STATISTICS AND
WHAT DO WE DO IN CLASS.
DO WE GO OUT AND COLLECT DATA?
WHAT'S HAPPENING IN THE CLASS?
AND IT WAS QUITE CHALLENGING AT
FIRST NEVERTHELESS I LIKED IT
AND DECIDED TO CONTINUE WITH
THAT AS MY MAJOR IN COLLEGE,
EVEN NOW MANY OF MY DEAREST
FRIENDS JOKE AROUND AND SAY I
MAKE GRAPHS WITH SOFTWARE FOR A
LIVING BUT JOKES ASIDE, THAT
TASK OF TALKING ABOUT MY WORK
HAD BEEN A LESSON I HAD TO ADAPT
AND I WORK WITH PEOPLE OF
VARIOUS BACKGROUNDS AND THE TASK
OF ILLUSTRATING THE FINDINGS IN
A WAY MY COLLABORATOR CAN
UNDERSTAND IS SOMETHING I GOT TO
PRACTICE FOR A LONG TIME.
THE BIGGEST CHANGE IN DIRECTION
OF MY CAREER WAS WHEN I DECIDED
TO GIVE RESEARCH A GO.
DURING MY UNDERGRADUATE STUDIES
OR UNTIL THE END OF MY MASTER'S
I HAD NO INTENTION OF TAKING THE
Ph.D. OUT.
THAT THE POINT IN TIME JOBS
BASED ON ANALYTICS ESPECIALLY IN
THE BANKING OR ANY OTHER
BUSINESS DOMAIN WERE BOOMING IN
INDIA AND MANY PEOPLE WITH
DIFFERENT BACKGROUNDS WERE
ENROLLING TO LEARN ABOUT
STATISTICAL MODELS TO LAND ONE
OF THOSE ANALYTICS JOBS.
I REMEMBER I WAS GOING ON
BOASTING ALONG THE CORRIDORS OF
THE SECOND BUILDING IN THE SLIDE
AMONG MY FRIENDS BOASTING ABOUT
MY MAJOR AND BACKGROUND AND SAY
IT MAY OR MAY NOT BE ROCKET
SCIENCE BUT WE'RE NOT ONLY
MAKING GRAPHS.
THOUGH THAT WAS ONE OF THE
IMPORTANT ASPECTS FOR A JOB.
MOST MY PEERS WERE TAKING THE
JOBS AND I WAS ALSO PLANNING TO
DO THE SAME TO BE HONEST.
IT WAS WHEN BIO STATISTICS
COURSE WAS OFFERED DURING MY
MASTER'S BY POSSIBLY ONE OF THE
BEST TEACHERS I EVER HAD AND
THAT CHANGED MY PERSPECTIVE.
PREVIOUS TO MY EXPERIENCE WITH
STATISTICS WAS MOSTLY ASSOCIATED
WITH MATHEMATICS AND DEVELOPING
STRONG BACKGROUND STATISTICAL
MODELS A MATHEMATIC FLAVOR OF
THE MODEL AND PROOFS ETCETERA.
POSSIBLY THAT THE FIRST TIME
EVER ASSOCIATED WITH THE REALITY
AND COULD UNDERSTAND HOW I COULD
USE MY KNOWLEDGE TO BE A PART OF
CHANGING SOCIETY OR SOMETHING OF
THAT SORT.
I LEARNED AND REALIZED HOW TO
USE MY KNOWLEDGE TO UNDERSTAND
PREDICT AND POSSIBLY CURE
DISEASES WHICH WAS FASCINATING
AT THAT MOMENT AND I TOOK AN
Ph.D. IN OCTOBER 2013 WHICH
FINA
FINALLY BROUGHT ME TO THE
U.S. AND MY PARENTS WERE SHOCKED
AND NOT SURE THAT WAS THE RIGHT
PATH FOR ME BECAUSE THE DECISION
WAS TAKEN IN A SHORT SPAN OF
TIME.
THEN CAME THE RESEARCH PHASE OF
MY LIFE AND THERE WERE LOTS OF
UPS AND DOWNS AS WELL.
WHEN I STARTED MY Ph.D. I HAD
HOPED TO WORK IN CANCER
RESEARCH.
IT WAS MY ADVISER AND MY
DEPARTMENT CHAIR FROM THE
UNIVERSITY OF LOUISVILLE WHO
SUGGESTED AND REQUESTED IF I'M
INTERESTED TO WORK AS A RESEARCH
ASSISTANT IN THE DEPARTMENT OF
PEDIATRICS.
TO BE HONEST I WAS SKEPTICAL AND
THINKING I WAS MOVING -- LIKE
THIS IS NOT ALIGNED TO MY GOAL.
LATER I THOUGHT I'D GIVE IT A
TRY AND ONCE I AGREED AND
STARTED WORKING WITH THEM AS
PART OF THE TEAM, WHAT HAPPENED
WAS MEDICAL DOCTORS WERE POURING
IN ON A DAILY BASIS WITH LOADS
OF RESEARCH QUESTIONS AND THAT'S
THE FIRST TIME I TOOK PART IN
INTERDISCIPLINARY COLLABORATIVE
WORK.
IT WAS A NEW EXPERIENCE FOR ME
AS I GOT TO KNOW SOME OF THE
AREAS AND SOME OF THE EVERYDAY
PROBLEMS THE DOCTORS ARE GAUGED
IN.
UNDOUBTEDLY IT WAS OVERWHELMING
AT FIRST.
IT WAS EXTREMELY FASCINATING AS
WELL.
AND I FEEL THE EXPOSURE HELP ME
IN MY POST-DOCTORAL POSITION AT
NICHD AND THE EXPERIENCE CAME IN
HANDY IN THE ROLE I'M IN NOW.
MY POST-DOCTORAL RESEARCH
EXPERIENCE AT NICHD WAS EVEN
MORE FASCINATING COMPARED TO MY
DOCTORAL RESEARCH.
I HEARD SO MANY GOOD THINGS
BEFORE JOINING NICHD
SPECIFICALLY FROM ONE OF THE
SENIORS AT THE UNIVERSITY OF
LOUISVILLE WHO JOINED HITCHED
BEFORE ME AND HAD AN AMAZING
EXPERIENCE.
FOR ME IT WAS CHALLENGING AND
SLIGHTLY DIFFERENT AT FIRST
BECAUSE I HAD TO PICK A NEW
RESEARCH AREA RELATED TO THE
DIAGNOSIS OF DISEASES AND
OUTCOMES TO BIOMARKERS.
IT WAS VERY DIFFERENT FROM THE
RESEARCH I DID DURING MY PH.D.
LITTLE DID I KNOW ABOUT THE
FIRST APPLICATION OF THE AREA
BUT GRADUALLY I GOT TO
UNDERSTAND THE POTENTIAL AS IT
WAS RELATED TO NOVEL COVID AND
TO THE SCOPE TO EFFICIENTLY
DIAGNOSE THEM AND I CANNOT THANK
ENOUGH MY POST-DOCTORAL FELLOW
FOR CONSIDERING ME FOR THIS
AREA.
I RECALL GOING FOR A FEW WALKS
WITH HIM AROUND THE POND IN
FRONT OF THE 6710B WHEN WE WERE
DISCUSSING MY POTENTIAL
DIRECTION AND PIT FALLS AND I
CAN'T IMAGINE HOW HELPFUL
THEY'VE BEEN AS THEY HELPED
SHAPE MY INTEREST.
I WAS AT NICHD FOR MORE THAN
THREE YEARS AND DUE TO COVID WAS
ONLY THE ABLE TO BE PHYSICALLY
PRESENT LESS THAN HALF A MONTH
AT MY TIME AT NICHD BUT DURING
MY STAY AT NICHD I LEARNED A
LOT.
I MADE A LOT OF MEMORIES AND I
HAD CONSTANT SUPPORT FROM ALL
THE INVESTIGATORS ACROSS ALL THE
BRANCHES.
I FEEL SO HAPPY TO THINK I SAID
YES TO SO MANY CHALLENGES ON
DIFFERENT OCCASIONS.
ALL THOSE CHOICES CUMULATIVELY
PUT ME IN MY ROLE AT UVA WHERE I
GOT TO COLLABORATE WITH DOCTORS
ON THEIR RESEARCH WHICH BLOWS MY
MIND.
I GET TO LEARN ABOUT RIVETING
DIRECTIONS MEDICAL SCIENCE IS
TAKING ON A DAILY BASIS AND FEEL
FORTUNATE TO BE PART OF THE
PROGRESS THE TEAMS ARE MAKING.
I GET TO MEET WITH NEXT
GENERATION OF RESEARCHERS AND
DOCTORS AND SHARE MY KNOWLEDGE
WITH THEM.
I COULDN'T THINK OF A WAY TO
HIGHLIGHT THE FAILURES DURING
THE JOURNEY SO FAR.
IF I DID THE SLIDE WOULD HAVE
BEEN FILLED UP BUT OF COURSE IT
WAS NOT ALL GLORY DURING THE
JOURNEY.
IT'S NEVER LIKE THAT THERE WERE
A LOT OF FAILURES, A LOT MORE
THAN I HAD EVER HOPED BUT FACED
REJECTION FROM JOURNALS AND NOT
ALWAYS SUCCESS IN DIFFERENT
RESEARCH ENDEAVORS AND NOW I
FEEL DIFFERENT CORNERS OF THESE
BUILDING SHARE TRIUMPHS AND
FAILURES WITH ME BUT WHAT WAS
MOST IMPORTANT WAS MY MENTORS
AND AT ALL CORNERS WITH ME AND
HELPED ME LEARN TO HANDLE THE
FAILURES AND TO ACCEPT THEM AS
PARTS OF MY LIFE.
THEY ASSURED ME THIS HAPPENED TO
EVERYONE EVEN THE BEST ONES AND
HAVE FACED WORSE.
I'M SURE THEY WERE EXAGGERATING
A LOT IT WAS COMFORTING TO HEAR.
I THINK THE MOST IMPORTANT WAS
HOW TO HANDLE FAILURES AND MORE
IMPORTANTLY HOW TO LEARN FROM
THEM.
WHAT I'M TRYING TO SAY IS
THERE'LL BE SURPRISES AT EVERY
CORNER.
OFTEN MANY OF THOSE SURPRISES
WILL NOT BE THE GOOD ONES BUT
EITHER WAY TLA THERE WILL ALWAYS
BE PEOPLE AROUND WITH MORE
EXPERIENCES AND WAY MORE
EXPERIENCES THAN YOU SO YOU CAN
LEARN FROM THEM AND HANDLE THE
FAILURES AND MOVE ON WITH YOUR
LIFE.
OF COUR THERE'S LOTS OF LESSONS
WE GET TO LEARN ON THE JOB WHICH
ARE HARDLY EVER TAUGHT IN THE
SCHOOLS AS PART OF OUR
CURRICULUM.
MANY ARE LIKE ORGANIZE SKILLS
AND TIME MANAGEMENT, DISCIPLINE,
PERSEVERANCE AND I CAN GO ON AND
ON.
WE ALL GET TO LEARN THAT
THROUGHOUT OUR LIFE WITH OUR
PEERS AND WE CAN TRY TO ADAPT IN
OUR LIVES AS WELL.
WHAT I REALIZED WE HAVE SO MUCH
TO LEARN FROM AND I GET INSPIRED
FROM EVERYONE AND A BELIEVE
THERE'S SO MUCH FOR ME TO LEARN,
ADAPT AND APPLY.
I REALLY WISH THERE WAS A
FORMULA TO BE MORE PRODUCTIVE.
I WISH I HAD SOMETHING I COULD
SHARE WITH ALL OF YOU THAT ARE
UNIQUE, DIFFERENT AND EFFECTIVE
BUT AT THIS MOMENT I HAVE TO
LEARN SO MUCH MORE AND WHAT I
HAVE RIGHT NOW ARE THE BUILDINGS
FULL OF MEMORIES.
ALL OF YOU, ESPECIALLY THE
POSTDOCS, PRE DOCS, POST-BACS, I
WISH YOU WELL IN YOUR FUTURE,
HOPEFULLY YOU'LL GATHER A LOT OF
MEMORIES LIKE I DID.
HOPEFULLY WE'LL MEET IN THE
FUTURE IN PERSON ON SOME OTHER
OCCASION IN ANOTHER MOMENT.
I CAN THANK ALL MY PEERS AND
FELLOW INVESTIGATORS AND MANY
THANKS TO ALL OF YOU.
THANK YOU.
>>THANK YOU FOR SHARING YOUR
FASCINATING JOURNEY WITH US.
NEXT WE'LL HAVE THE PLEASURE OF
HEARING FROM DR. SONYA TANG
GIRDWOOD.
SHE IS CURRENTLY AN ASSISTANT
PROFESSOR IN THE DIVISION OF
HOSPITAL MEDICINE AND CLINICAL
PHARMACOLOGY AT CINCINNATI
CHILDREN'S HOSPITAL MEDICAL
CENTER.
IN HER FIRST YEAR ON THE
FACULTY, SHE RECEIVED A K12
NICHD CAREER DEVELOPMENT AWARD
TO STUDY THE RELATIONSHIP
BETWEEN THE DEVELOPMENT OF ACUTE
KIDNEY INJURY USING NOVEL
BIOMARKERS.
SHE RECEIVED HER M.D. AND Ph.D.
AT JOHNS HOPKINS UNIVERSITY
SCHOOL OF MEDICINE AND COMPLETED
HER CHIEF RESIDENCY AT THE SAME
HOSPITAL WHERE SHE IS NOW BASED.
AFTER RESIDENCY SHE STAYED IN
CINCINNATI FOR HER FELLOWSHIP
AND T32 NICHD PEDIATRIC CLINICAL
PHARMACOLOGY FELLOWSHIP.
WELCOME DR. TANG GIRDWOOD.
>>THANK YOU TO DR. BIANCHI AND
NICHD FOR GIVING ME THIS
OPPORTUNITY TO BE ON THIS
WONDERFUL PANEL.
AS DR. GREWAL SAID I'M AN
ASSISTANT PROFESSOR AT
CINCINNATI CHILDREN'S HOME AND A
PHYSICIAN AND RESEARCHER
PRIMARILY STUDYING ANTIBIOTICS
IN CRITICALLY ILL CHILDREN.
YOU'LL SEE MY TWITTER CON INFO
ON THE SLIDE AND FEEL FREE TO
CONTACT ME THROUGH TWITTER.
I WANT TO TALK ABOUT MY CAREER
PATH IN HIGH SCHOOL I THOUGHT I
WANTED TO BE A MEDICAL DOCTOR.
I'D APPLIED TO THE PROGRAMS AND
FORTUNATE TO NOT HAVE BEEN
ACCEPTED BECAUSE I DON'T THINK I
WANTED TO GO INTO MEDICINE FOR
THE RIGHT REASONS AT THAT TIME.
INSTEAD I WENT TO M.I.T. WHERE
THE MAJORITY OF STUDENTS PURSUE
RESEARCH AND GIVEN FUNDING TO DO
SO.
I MOVED IN A BIO AND ORGANIC
CHEMISTRY LAB AND THOUGHT I'D
APPLY TO GRAD SCHOOL FOR A PH.D.
FORTUNATELY TOWARDS THE END OF
MY JUNIOR YEAR I LEARNED ABOUT
THE MD Ph.D. PROGRAM AND I
REALIZED I WANTED MY RESEARCH TO
MAKE A DIRECT IMPACT ON PEOPLE
AND FOR ME IT WAS IMPORTANT TO
HAVE MEDICAL TRAINING SO MY CARE
COULD INFORM MY RESEARCH
QUESTIONS.
I WENT TO JOHNS HOPKINS SCHOOL
OF MEDICINE AND OBTAINED MY
Ph.D. IN BASIC SCIENCE
PHARMACOLOGY.
I LOVE PHARMACOLOGY.
IT COMBINES MY INTERESTS IN
CHEMISTRY AND BIOLOGY AND I
LEARNED A LOT DURING MY BASIC
SCIENCE RESEARCH AND I ALSO
REALIZED UNDER MY UNDERSTAND
THAT MAYBE BASIC SCIENCE WAS
QUITE MY PASSION.
BUT I WAS VERY UNFORTUNATE THAT
I DID LEARN ABOUT CLINICAL
PHARMACOLOGY WHICH IS A
TRANSLATIONAL RESEARCH
DISCIPLINE AND THOUGHT PERHAPS
THAT COULD BE A POTENTIAL
RESEARCH AREA FOR ME IN THE
FUTURE BUT BY THE TIME I
GRADUATED MEDICAL SCHOOL I STILL
HADN'T HAD ANY EXPERIENCE WITH
CLINICAL PHARMACOLOGY.
I WENT ON TO CINCINNATI
CHILDREN'S MEDICAL CENTER AND I
DID A FULL THREE YEARS OF
CLINICAL TIME.
THIS MEANS I DIDN'T DO ANY OF
THE ACCELERATED OR INTEGRATIVE
RESEARCH PATHS, I DIDN'T KNOW
WHAT I WANTED TO SPECIALIZE IN
AND UNFORTUNATELY I DID HAVE
OPPORTUNITY TO ENGAGE IN
CLINICAL PHARMACOLOGY RESEARCH
AND ABLE TO STUDY DIFFERENT
DRUGS IN CLINICALLY ILL CHILDREN
AND SEEING MY RESEARCH HAVE AN
IMPACT AND I DECIDED I WOULD DO
A CLINICAL PHARMACOLOGY
FELLOWSHIP WITH A CLINICAL
FELLOWSHIP.
BEFORE GOING ON TO THE
FELLOWSHIP I A YEAR OF CHIEF
RESIDENCY WHICH IS NOT A TYPICAL
PATH.
I CHOSE TO DO THE CHIEF
RESIDENCY BECAUSE I WANTED TO
DEVELOP MY SKILLS IN TEACHING
LEARNERS AND LEARN ABOUT THE
ADMINISTRATION AND OPERATIONS OF
A HOSPITAL.
I WAS FORTUNATE IN THAT YEAR OF
CHIEF RESIDENCY I WAS EXPOSED TO
MANY TYPES OF RESEARCH INCLUDING
QUALITY IMPROVEMENT, MEDICAL
EDUCATION AND CLINICAL RESEARCH
ALL OF WHICH I HAD NEVER
EXPERIENCED BEFORE AND IT
ALLOWED ME TO BE A WELL-ROUNDED
REASONER TO WORK IN DIFFERENT
DISCIPLINES.
I THOSE MY FELLOWSHIP TO BE IN
MEDICINE WHERE WE TAKE CARE OF
CHILDREN WITH PEDIATRIC ISSUES
AND ALSO WITH HIGH MEDICAL
COMPLEXITY WHO HAVE INVOLVEMENT
ON MULTIPLE DISCIPLINES AND
SPECIAL AND I COMBINED MY
FELLOWSHIP WITH ANOTHER
FELLOWSHIP THROUGH A T32 PROGRAM
AND FOUND THE FOUNDATION IN MY
RESEARCH PROGRAM IN PHARMACO
DYNAMICS IN CRITICALLY ILL
CHILDREN.
I WAS ABLE TO STAY ON FOR A
FACULTY AND MY FIRST TWO YEARS
WERE FUNDED BY AN NICHD K-12
DEVELOPMENT AWARD TO BEGIN
BUILDING MY PROGRAM.
AND I'M PROUD TO SAY I
TRANSITIONED FROM A K TO AN R
AND FUNDED THROUGH THE R35.
I SHOW YOU THIS TIME LINE SO YOU
KNOW MY CREDENTIALS OR WHERE I
TRAIN BUT TO SEE THE AMOUNT OF
TIME IT TOOK FOR ME BETWEEN
KNOWING THAT I WANTED TO SUR SUE
KIENTS AND MED SIP -- OF
AND DURING THE 20 YEARS I
CONSTANTLY QUESTION WHAT I
WANTED TO DO WITH ANY CAREER AS
YOU HEARD, TRYING OUT DIFFERENT
PATHS AND ULTIMATELY REFINING MY
CAREER MISSION.
ONE OF THE MAIN TAKEAWAYS FROM
THE TALK IS WHEREVER YOU ARE IN
TRAINING, FINDING YOUR CAREER
PATH STARTS NOW BY FIGURING OUT
YOUR MISSION STATEMENT.
FOR ME, WHEN I STARTED
FELLOWSHIP I KNEW I WANTED
RESEARCH TO BE PART OF MY CLEAR.
I JUST HAD NO IDEA HOW MUCH.
I HAD DONE 100% RESEARCH TIME
AND DID CLINICAL TIME DURING MY
RESIDENCY.
THE FELLOWSHIP WAS A TIME FOR
KNOW FIGURE OUT IF I LIKED THE
75% RESEARCH, 25% CLINICAL SMITH
WHETHER I LIKED GRANT WRITING OR
DINING AND STUDYING AND MY
MISSION STATEMENT INVOLVED OVER
MY TIME DURING MY FELLOWSHIP
TIME AND AS I CHANGED MY CAREER.
SO WHEN I FIRST STARTED
FELLOWSHIP, MY MISSION STATEMENT
WAS PRETTY SAYING SAYING I
WANTED TO BE A PEDIATRIC
HOSPITALIST AND EDUCATOR AND
LOVED TEACHING AND WANTED TO BE
AN NIH FUNDED RESEARCH IN A
PEDIATRIC PHARMACOLOGY FIELD.
I SHARED THING WITH MENTORS IN
WHAT I MEND IN LOVED TEACHING
AND WHETHER I WANTED TO PURSUE
MED ED RESEARCH AND I SAID
PROBABLY NOT AND KEEP THE
REFINING MY MISSION STATEMENT
AND I WANTED TO BE AN AM I
WANTED TO PROVIDE PERSONALIZED
MODELS OF THERAPEUTIC
HOSPITALIZED CHILDREN.
I USE THIS LONGER MISSION
STATEMENT TO WRITE MY RESEARCH
MISSION WHICH I SHARE DURING MY
SEARCH OF FACULTY POSITION
SAYING I WANTED TO OPTIMIZE THE
DELIVERY OF SAFE AND EFFECTIVE
MEDICATION TO IMPROVE CLINICAL
OUTCOMES.
I TRULY BELIEVE BY HAVING THIS
MISSION STATEMENT I SHARED WITH
OTHERS LED ME TO BE ABLE TO FIND
MY IDEAL FACULTY CHILDREN AT
CINCINNATI CHILDREN.
SO MY ADVICE TO LEARNERS AND
TRAINEES ARE TO WRITE OUT OUR
MISSION STATEMENT AND SHARE IT
WITH MENTORS, PEER MENTOR AND
FRIENDS AND FAMILIES AND REFINE
IT AS YOU GET MORE CLARITY ABOUT
WHAT YOU WANT.
I WOULD BE HIGHLY NEGLECT IF I
DIDN'T ACKNOWLEDGE IT TOOK A
VILLAGE TO GET ME TO WHERE I AM
NOW.
I DIDN'T FIGURE OUT MY MISSION
STATEMENT OR CAREER PATH ON MY
OWN.
SO I WANT TO SHARE WITH YOU THE
TYPES OF MENTORS IN MY LIFE THAT
HELP ME GET ON THE SPEAR.
FOR ALL OF US IN RESEARCH WE
KNOW WE NEED RESEARCH MENTORS IN
THE AREA OF STUDY WE WANT TO
PURSUE.
FOR ME, DR. TERI SHAPIRO WAS
INSTRUMENTAL IN HELPING ME FALL
IN LOVE WITH KARM PHARMACOLOGY
AND INTRODUCED ME TO CLINICALS
PHARMACOLOGY.
DR. SHAPIRO HELPS ME STUDY
MEDICATIONS IN CRITICALLY IL
CHILDREN.
DR. DONG AND MIZUNO TEACH ABOUT
METRICS AND AS MY RESEARCH HAS
CONTINUED TO GROW AND I'VE
EXPANDED TO THE FIELD OF KIDNEY
INJURY THEY'VE BEEN CONTACT
MENTORS IN THIS AREA.
IT WASN'T UNTIL FELLOWSHIP I
REALIZED I NEEDED MORE THAN JUST
SCHOLARLY CONTENT MACHINE BUT
CAREER MENTORS AND CAREER
SPONSORS.
FORECASTLY, PART OF FELLOWSHIP
WE ALSO AN FELLOWSHIP OVERSIGHT
COMMITTEE WHICH HAS DEVELOPED IN
THE CAREER DEVELOPMENT.
DR. SHAH AND BRADY HELP WITH
PRECIPITATION OUTSIDE THE
DIVISION AND I HAD A FEMALE
PHYSICIAN SCIENTIST WHO WAS A
FULL PROFESSOR WHO DOES CLINICAL
AND TRANSLATIONAL RESEARCH AND A
ROLE MODEL I COULD LOOK UP TOE.
I HAVE REPRESENTATION OUT SIDE
OF MY INSTITUTION.
DR. DRIEST IS A PHARMACOLOGIST
AT VANDERBILT WHO CAN GIVE
ADVICE ON RESEARCH AND THIS
GROUP OF INDIVIDUALS HELPED
PROVIDE DIFFERENT PERSPECTIVES
AND HELPED ME WHEN I NEEDED TO
MAKE DIFFICULT DECISIONS WRONG
MY CAREER PATH.
FOR EXAMPLE, WHETHER I SHOULD
TAKE ON A CERTAIN LEADERSHIP
POSITION.
I THINK IT'S ALSO IMPORTANT TO
HAVE LIFE MENTORS AND ROLE
MODELS WHO ARE PEOPLE YOU AS
SPIRE TO BE IN ACADEMEA OR LIFE
>>THAT'S IMPORTANT TO HAVE A
FAMILY THAT IS SUPPORTIVE AND
UNDERSTAN
UNDERSTANDING SUCH AS WHEN A
GRANT IS DUE AND TO GROUND YOU
AND REMIND YOU THERE'S LIFE
OUTSIDE OF WORK.
WORK ON YOUR MISSION STATEMENT
AND USE THAT AS YOUR CAMPUS TO
GUIDE YOUR WAY FORWARD AND BUILD
A NETWORK OF MENTORS NOT JUST IN
YOUR CONTENT AREA BUT HAVING
PEOPLE SHOW YOU DIFFERENT CAREER
PATHS.
THANK YOU.
>>THANK YOU FOR YOUR PATIENCE
WITH THE TECHNICAL GLITCHES
ALONG THE WAY.
OUR FINAL SPEAKER THIS AFTERNOON
IS DR. CRYSTAL ROGERS.
DR. ROGERS IS CURRENTLY AN
ASSIST AND THE PROFESSOR IN THE
DEPARTMENT OF ANATOMY,
PHYSIOLOGY AND CELL BIOLOGY AT
THE U.C. DAVIS SCHOOL OF V
VETERINARY MEDICINE AND WAS AT
THE CALIFORNIA STATE UNIVERSITY
NORTHRIDGE WHERE SHE CREATED A
THRIVING UNDERGRADUATE RESEARCH
PROGRAM IN DEVELOPMENTAL
BIOLOGY.
DR. ROGERS OBTAINED A BACHELOR
OF SCIENCE FROM UCLA AND Ph.D.
IN DEVELOPMENT BIOLOGY FROM
GEORGETOWN UNIVERSITY.
SHE DID HER POST-DOCTORAL
TRAINING AT THE CALIFORNIA
INSTITUTE OF TECHNOLOGY.
DR. ROGERS, WELCOME AND THANK
YOU FOR BEING HERE.
>>THANK YOU SO MUCH FOR HAVING
ME.
THAT WAS A PHENOMENAL
INTRODUCTION AND NOW I DON'T
FEEL I NEED TO SHOW ANY OF MY
SLIDES BUT I'LL SHOW THEM ANYWAY
BECAUSE THERE'S FUN PICTURES.
THANK YOU TO DR. BIANCHI FOR
PLANNING THIS AND FOR GIVING THE
ME OPPORTUNITY TO TALK ABOUT MY
JOURNEY.
I STOLE THE TITLE AS SOMEONE
SUGGESTED I SHOULD USE THE TITLE
AND I THOUGHT IT WAS A
PHENOMENAL.
I'M CRYSTAL ROGERS AND I'LL TELL
YOU ABOUT A CRYSTAL CLEAR VIEW
OF MY DEVELOPMENT OF BIOLOGY.
I'M ORIGINALLY FROM A TOWN IN
CALIFORNIA CALLED SANTA ROSA AND
GROWING UP I THOUGHT IT WAS A
SMALL TOWN BUT I WAS CORRECTED
AS A TRAVELED ACROSS THE
U.S. AND REALIZED IT'S A
MODERATELY SIZED CITY.
THIS IS ONE OF THE HUBS IN
NORTHERN CALIFORNIA WINE COUNTRY
AND SANTA ROSA IS A BEAUTIFUL
TOWN BUT FOR THE MOST PART MOST
OF THE PEOPLE I KNEW THAT WERE
IN MY CIRCLE HAD NEVER BEEN TO
COLLEGE AND THERE ARE
WORKING-CLASS FAMILIES
SURVIVING.
MY MOTHER WORKED AT THE UNITED
STATES POST OFFICE AND DID NOT
ATTEND COLLEGE AND MY DAD DID
NOT GROW UP FROM COLLEGE AND
GREW UP IN A SINGLE PARENT
HOUSEHOLD WITH THE IDEA THAT
WORKING HARD IS IMPORTANT AND
YOU WORK HARD TO GET WHAT YOU
NEED AND WORKING IS ALL YOU DID
AND YOU DID IT BECAUSE YOU HAD
TO UNTIL YOU DIED WHICH IS A
LITTLE BIT OF A BUMMER.
AND I DIDN'T KNOW ANYBODY WITH A
WHITE COLLAR JOB WHERE IT'S A
CAREER AND YOU CHOSE THE PATH.
EVERYONE I KNEW WAS WORKING
THEMSELVES TO THE BONE TO
ADVISER.
I DIDN'T HAVE A LOT OF GUIDANCE
ON MY JOURNEY.
I DID WELL IN HIGH SCHOOL AND
GOT STRAIGHT As AND LOVED SCHOOL
AND LOVED THE STRUCTURE OF
SCHOOL BECAUSE I WAS COMING FROM
A HOME IN DISARRAY, WE'LL SAY.
AND SO WHEN I APPLIED TO
COLLEGES AN APPLIED TO THREE
UNIVERSITIES BECAUSE THAT WAS
ALL THAT I KNEW.
I THOUGHT THAT'S WHAT YOU DID.
UNIVERSITY OF CALIFORNIA SAN
DIEGO AND BERKELEY UNIVERSITY
AND UCLA AND I GOT INTO ALL
THREE AND I WAS EXCITED.
NOT KNOWING ANYTHING ABOUT
COLLEGE RANKINGS OR TOWNS
BECAUSE I HAD NOT BEEN OUT OF
SANTA ROSA I CHOSE UCLA BECAUSE
AT THE TIME THEY HAD THIS
AMAZING BASKETBALL TEAM IN THE
'90s.
THEY WERE PHENOMENAL THE BANDON
BROTHERS AND I WAS A BASKETBALL
PLAYER IN HIGH SCHOOL AND I WAS
ENAMORED WITH THIS TEAM AND KNEW
IT WAS A GOOD SCHOOL SO I WENT
THERE AND I GOT THERE WITHOUT
THE IDEA OF HAVING ANY IDEA WHAT
I WAS DOING.
I DIDN'T HAVE A TON OF GUIDANCE
AND MY MOM WANTED THE BEST FOR
ME AND WHAT I WAS TAKING WITH ME
WAS GRIT AND STUBBORNNESS AND
DETERMINATION AND AMBITION.
WHEN I GOT TO UCLA IT WAS A
SHOCK, A CULTURE SHOCK.
LOS ANGELES WAS VERY DIFFERENT
FROM NORTHERN CALIFORNIA AND
[NO AUDIO]
AND IT TURNS OUT I DIDN'T KNOW
HOW TO LEARN.
I DIDN'T KNOW HOW TO STUDY.
I DIDN'T KNOW HOW TO COMPETE AT
THE COLLEGE LEVEL ACADEMICALLY.
AND MY MAJOR WAS ORGANISMAL
BIOLOGY AND I LOVED SCIENCE
GROWING UP AND AT THE TIME I
THOUGHT IF YOU LOVE SCIENCE YOU
BECOME A MEDICAL DOCTOR SO I WAS
ORIGINALLY PRE MED AT UCLA BUT
IT TURNS OUT I LIKED ANIMAL
BEHAVIOR AND ECOLOGY AND
EVOLUTION CLASSES AND THOSE ARE
THE CLASSES IN WHICH I THRIVED
AND THOSE DON'T PREP YOU FOR
MEDICAL SCHOOL AND I WAS IN
SCHOOL WITH STUDENTS THAT WERE
PRE MED AND THEY WERE PRETTY
MISERABLE.
THEY WERE KILLING THEMSELVES FOR
THE GRADES AND ALL THEY DID WAS
STUDY AND KNOWN OF THAT WAS
ANYTHING THAT SOUNDED LIKE MY
PATH.
SO I STARTED FOCUSSING ON
ECOLOGY, EVOLUTION AND BIOLOGY
AND ENJOYED THE CLASSES AND I
HAD A GPA NOT COMPETITIVE FOR
VOLUNTEER SPOTS IN LABS AND
DIDN'T DO RESEARCH AS AN NEW
JERSEY OF UNDERGRADUATE AND TO
VOLUNTEER IN A LAB THEY EXPECTED
A 3.5 OR ABOVE AND IN ADDITION I
DIDN'T HAVE ABILITY TO
VOLUNTEER.
I NEEDED MONEY.
I NEEDED A JOB.
I WORKED TWO PART-TIME JOBS.
I WORKED AS A CLERICAL ASSISTANT
FOR A NEUROSURGEON FOR THE
MEDICAL CENTER AND WORKED AS A
VET TECH FOR A VETERINARIAN AND
THAT WAS THE POINT AT WHICH I
THOUGHT MAYBE I'LL BECOME A
VETERINARIAN.
IT'S COOL AND IT'S CLINICAL AND
LOVED ANIMALS BUT I WAS INFORMED
MY 3.0 WOULDN'T GET IT SO I HAD
TO RETHINK MY PATH AND DIDN'T
KNOW WHAT I WANTED TO DO.
I WAS IN COLLEGE AND I WAS
ENJOYING MY TIME.
YOU SEE THE PICTURE OF ME BEING
YOUNG AND HAVING FUN IN MY TINY
KID SIZED UCLA T-SHIRT, GO
FIGURE, I DIDN'T HAVE A FOCUS.
I GRADUATED AND I DID OKAY AND I
STILL LOVED BIOLOGY BUT I DIDN'T
KNOW WHAT TO DO AFTER THAT SO
WHEN I GRADUATED WHAT I DECIDED
TO DO WAS GET A JOB.
I WORKED FOR THE SAME
NEUROSURGEON BUT NOW HE WAS AT
CEDAR SINAI AND I DIDN'T FEEL MY
CAREER WAS TAKING ME ANYWHERE
BECAUSE I WAS BASICALLY AN
ADMINISTRATIVE ASSISTANT AND/OR
PERSONAL ASSISTANT AND WHAT DID
YOU DO IF YOU'RE NOT IN SCIENCE
AND SINCE I DIDN'T HAVE ANYBODY
TO GUIDE ME I FLOATED AND HOPED
SOMETHING WOULD HELP ME MAKE A
DECISION AND THIS WAS THE POINT
AT WHICH I DECIDED I WOULD APPLY
TO GRADUATE SCHOOL.
AT THE TIME I DIDN'T KNOW THE
DIFFERENCE BETWEEN A MASTER'S
DEGREE OR A Ph.D. AND I
WASN'T -- I THINK I DIDN'T WANT
TO ADMIT THESE THINGS SO I
DIDN'T ASK ANYBODY AND APPLIED
TO THREE GRADUATE SCHOOL, U.C.
SAN DIEGO AND UCLA AND THEY
WEREN'T INTERESTED IN MY ME
WHICH IS THEIR LOSS IN MY
PERSONAL OPINION AND GOT AN
INTERVIEW AT GEORGETOWN
UNIVERSITY AND I GOT IN AND IT
WAS AMAZING BECAUSE LOOKING BACK
ON MY APPLICATION AND PROFILE I
DON'T KNOW IF I COULD COMPETE
FOR A SPOT TODAY.
THE STUDENTS COMING IN TODAY ARE
HEAD AND SHOULDERS AND ABOVE
WHERE I WAS AND THEY HAVE A TON
OF RESEARCH EXPERIENCE AND SOME
HAVE PAPERS AND I LOOK AT MY
STUDENTS AND I'M SO GRATEFUL I
WAS GIVEN THE OPPORTUNITY TO GO
TO GRADUATE SCHOOL BECAUSE IT
CHANGED MY LIFE AND CHANGED THE
LIFE OF EVERYBODY AROUND ME.
SO WHEN I GOT GEORGETOWN I
ROTATED IN AN ANIMAL BEHAVIOR
LAB AND TURNS OUT THAT WASN'T MY
PASSION.
I DON'T LIKE INSECTS.
I DIDN'T WANT TO SIT AND OBSERVE
ANIMALS.
NONE OF THAT WAS REALLY MY
THING.
WHEN I ROTATED IN A DEVELOPMENT
BIOLOGY LAB IT HAD ME.
FOR THOSE WHO KNOW ME, IF YOU DO
OR IF YOU'VE SEEN ME ON TWITTER,
YOU'LL KNOW I'M HASHTAG -- THIS
IS THE THING I DO AND WHAT I'M
PASSIONATE ABOUT.
I LEARNED THE LAB OF A
DEVELOPMENTAL BIOLOGIST NEW AT
THE UNIVERSITY AND CURRENTLY BE
FUNDED BY AN NICHD R01 HER FIRST
R01 AND THE FOCUS IN THE LAB WAS
TO TRYING TO UNDERSTAND HOW FROG
EMBRYOS DEVELOP AND TO
UNDERSTAND HOW THE NERVOUS
SYSTEMS WERE FORMED AND THE
EARLY STEPS.
MY DISSERTATION FOCUS WAS TRYING
TO UNDERSTAND THE MECHANISMS
THAT REGULATE THE INDUCTION AND
MAINTENANCE OF THE CELLS THAT
MAKE THE NERVOUS SYSTEM AND FROG
EMBRYOS WERE OUR MODEL.
IF YOU WATCH AT THE BEGINNING
THERE WAS A BEAUTIFUL ZEBRAFISH
DEVELOPING.
I PUBLISHED A FEW PAPERS.
I ALSO ENJOYED HAVING A GOOD
TIME AND INTRODUCED TO A TYPE OF
PROTEINS.
IT COMES FULL CIRCLE BECAUSE I
STILL STUDY THESE PROTEINS TO
THIS DAY, DIFFERENT KINDS.
ALL THESE FANTASTIC MOLECULE
CONSERVED ACROSS SPECIES AND
SOME INVERTEBRATES AS WELL.
YOU CAN SEE A PICTURE OF ME.
I HAD JUST JOINED THE LAB AND
VERY GREEN AND SUPER EXCITED
ABOUT RESEARCH.
I WAS SO YOUNG.
AS A LAB WE DID SOCIAL THINGS
AND WORKED HARD AND I WAS IN THE
LAB -- I STARTED GRADUATE SCHOOL
IN 2003 AND GRADUATED WITH MY
Ph.D. IN.
2009.
WHAT I CAN SAY ABOUT GRADUATE
SCHOOL BEING A FIRST-GEN PERSON
BEING ACROSS THE COUNTRY FROM MY
FAMILY WAS CHALLENGING.
THERE WERE MANY TIMES I FELT
LIKE I WANTED TO QUIT AND DIDN'T
BELONG AND IT WAS THROUGH GRIT
AND ALSO COMMUNITY THAT HELPED
ME STAY.
THAT MIXED WITH MY LOVE AND
PASSION FOR THE SCIENCE AND IT
CRAFTED MY DIRECTION.
AT THE TIME WHEN I STARTED
GRADUATE SCHOOL I THOUGHT I
WANTED TO GO INTO BIO TECH AND
THEN I STARTING MENTORING
STUDENTS AND I REALIZED I REALLY
ENJOYED MENTORING AND WORKING
WITH STUDENTS.
IN NATIONAL SOCIETY FOR
DEVELOPMENTAL BIOLOGY I MET MY
POSTD-DOCTORAL MENTOR AND SHE HS
BEEN FUNDED THROUGH NICHD FOR A
LONG A LONG LONG TIME AND WAS
LUCKY SHE AGREED TO WRITE A
DIVERSITY SUPPLEMENT AND THIS
BROUGHT KNOW HER LAB AS A
POST-DOCTORAL FELLOW TRYING TO
IDENTIFY THE TRANSCRIPTIONAL
DEVELOPMENTS FOR NEURAL CREST
CELL DEVELOPMENT.
IT'S A COMPLEX SUBJECT AND
NEURAL CREST CELLS ARE STEM LIKE
CELLS THAT MAKE THE PIGMENT
CELLS, SMOOTH MUSCLE CELLS AND
THERE'S CLEARLY VERY IMPORTANT
AND IF ANYTHING GOES WRONG IN
THE EARLY INVOLVEMENT YOU CAN
HAVE DEVELOPMENTAL ANOMALIES IN
ALL TISSUES.
SHE IS ONE OF THE LEADERS OF THE
FIELD OF DEVELOPMENT BIOLOGY AND
ONE OF THE MOST FAMOUS PEOPLE
WHO STUDIES NEURAL CREST CELLS
SO THIS OPPORTUNITY WAS
UNPARALLELED FOR MY CAREER
PROGRESSION.
WHILE I WAS IN HER LAB, I DID A
LOT OF SCIENCE AND LEARNED A LOT
OF NEW TECHNIQUES AND BEGAN
MENTORING STUDENTS ON MY OWN SO
SHE WOULD RECRUIT STUDENTS AND
GAVE POSTDOCS THE OPPORTUNITY TO
CRAFT THE PROJECTS AND THE
DIRECTION FOR THE STUDENTS AND
SO IT WAS VERY INDEPENDENT AND
THAT WAS WHEN I KNEW I WANTED TO
STAY IN ACADEMIA.
WHILE I WAS THERE, I GAINED A
LIKING FOR CELL ADHESION
MOLECULES AND GOT MY FIRST BIG
PAPER.
A BLACK WOMAN AND HAD A SEVERE
PREGNANCY WHERE I WOULD HAVE
DIED AND WAS LUCKY ENOUGH TO
HAVE SUPPORT FROM MY MENTOR SO I
WAS ABLE TO GO ON BED REST AND
SUPPORTIVE FUNDING SO I DIDN'T
HAVE TO LOSE HEALTH INSURANCE
AND A SUPPORTIVE DOCTOR TO CATCH
THESE THINGS AND I HAD MY KID
AND HE'S GREAT.
ALSO HE'S BEEN DIAGNOSED WITH
AUTISM AND ADHD WHICH ARE OTHER
THINGS NICHD FUNDS AND WATCHING
THE TALKS MAKES IT PERSONAL AND
I'M A PERSONAL AND MECHANISTIC
SCIENTIST BUT WHAT I DO HELPS
ANSWER QUESTIONS THE CLINICAL
SCIENTIST HAVE AND WE CAN WORK
TOGETHER TO FIND EFFECTIVE
TREATMENT FOR SOME OF THESE
THINGS.
SO IF YOU LOOK AT THE PICTURE OF
THE LAB, THIS IS THE LAB ONE OF
THE YEARS I WAS THERE AND OF THE
PEOPLE HALF HAVE THEIR OWN LABS
NOW AND SHE IS A FORCE IN
DEVELOPMENTAL BIOLOGY WHO HAS
MENTORED 40 PEOPLE WHO ARE
PROFESSORS.
MAKING THE CHOICE FOR YOUR
MENTORS IS IMPORTANT BECAUSE
SOME PEOPLE KNOW REALLY WELL
KNOW HOW TO GUIDE OTHERS AND
PROVIDE OPPORTUNITIES AND HAVING
THE ABILITY TO NETWORK WITH
PEOPLE AND HELP GET YOU TO THE
NEXT SPOT IS CRUCIAL.
SO I INTERVIEWED FOR A POSITION
AS AN ASSISTANT PROFESSOR AT
CALIFORNIA STATE UNIVERSITY
NORTHRIDGE AND HERE I WAS HIRED
AND THIS IS A PRIMARILY
UNDERGRADUATE AND
HISPANIC-SERVING INSTITUTION IN
SOUTHERN CALIFORNIA IN THE
NORTHERN REGION OF LOS ANGELES
COUNTY AND CSUN IS A FANTASTIC
UNIVERSITY WITH A NUMBER OF
STUDENTS WHO ARE FIRST
GENERATION AND PEL ELIGIBLE AND
YOU'RE WORKING WITH STUDENTS WHO
PROVIDE THE MENTORSHIP AND
PROVIDING THE OPPORTUNITY FOR
THOSE STUDENTS TO GET TO THE
NEXT STEP AND CHANGE THEIR LIVES
AND THE LIVES OF THEIR FAMILIES.
I WAS PASSIONATE ABOUT
UNDERGRADUATE RESEARCH AND I HAD
A TEAM AND WE STUDIED NEURAL
CREST DEVELOPMENT USING CHICKEN
AND AXOLOTL EMBRYOS AND IN THREE
AND A HALF YEARS I MENTORED
STUDENTS AND THEY'RE ALL MOVING
ON TO THE THE NEXT STEP AND FOR
ME MY GOAL WAS TO LEARN HOW TO
BE A BETTER MENTOR AND TEACHER A
I THINK I'M A BETTER P.I. AND
MENTOR FOR MY TIME THERE.
ONE OF MY BICK PUSHES AS A
PROFESSOR THERE WAS TO BRING MY
STUDENTS TO CONFERENCES AND LET
THEM GAIN OWNERSHIP OF THEIR
PROJECTS AND FOR ME SINCE ONE OF
THE THINGS THAT KEPT ME --
[NO AUDIO]
AND ENSURED EVERY YEAR AT CSUN I
BROUGHT MY STUDENTS TO DIFFERENT
CONFERENCES SO THEY CAN FEEL
WHAT IT'S LIKE TO PRESENT YOUR
WORK AND DEFEND THE WORK AND BE
EXCITED ABOUT SHOWING PEOPLE
WHAT YOU ACCOMPLISHED BECAUSE
THEY'VE ACCOMPLISHED SO MUCH
STUFF.
ALSO MOVING THERE WAS A BIG
TRANSITION BECAUSE I WAS
TEACHING A LOT AND TRYING TO
RETURN A RESEARCH LAB AND I WAS
STILL A MOM.
MY SON IS GROWING IN EACH OF
THESE PICTURES.
IT WAS HARD TO FIND BALANCE AND
SO WHEN I WAS OFFERED THE
OPPORTUNITY OR WHEN I APPLIED TO
U.C. DAVIS AND OFFERED THE
POSITION I TOOK IT AND FOR ME
THE BIG PUSH WAS BEING ABLE TO
GROW MY LAB AT A RESEARCH
INSTITUTION AND BEING ABLE TO
TAKE ON Ph.D. STUDENTS AND HAVE
STUDENTS WITH ME LONGER.
THAT'S WHY I THEN MOVED TO U.C.
DAVIS.
SO NOW I'M IN U.C. DAVIS IN
NORTHERN CALIFORNIA, A FANTASTIC
SCHOOL AND WE HAVE ROAMING COWS
AND ANIMALS TO LOOK AT AND
THERE'S A PHENOMENAL COLLEGIAL
ATMOSPHERE AND ALSO WE HAVE COOL
STUFF TO WORK WITH.
IT'S A BIG AG SCHOOL AND WE HAVE
A VETERINARY SCHOOL AND THERE'S
ROOM FOR COLLABORATION.
SINCE I GOT TO U.C. DAVIS I'VE
GOTTEN MY OWN EXTERNAL FUND IIN.
MY LAB FOCUSES ON IDENTIFYING
CONSERVED MECHANISMS AND NEURAL
CREST CELLS AND HOW VARIETAL
EXPOSURES CAN AFFECT THE
DEVELOPMENT PROGRAMS.
HERE IT HAS ALSO BEEN VERY
IMPORTANT AND I'LL SHOW YOU I
WORKED HERE NOW SO I'VE EXPANDED
MY RESEARCH MODELS TO QUAIL
CHICKEN AND AXOLOTL AND IT'S
IMPORTANT TO ANSWER QUESTIONS
USING THE APPROPRIATE MODEL
OPPOSED TO FITTING THEM INTO
YOUR RESEARCH MODEL.
IF ANYONE WANTS TO COLLABORATE
USING THESE ORGANISMS I'M HERE
AND IT'S BEEN VERY AMAZING TO
SEE HOW SIMILAR AND DIFFERENT
THINGS CAN HAPPEN IN THE
DIFFERENT VERTEBRATE ORGANISMS.
AGAIN, HERE ONE OF MY MAIN
FOCUSES IS MENTORING.
PART OF MY CAREER HAS BEEN TO
CREATE A SUMMER PROGRAM CALLED
FUNCTIONAL ANALYSIS OF CREST
DEFECTORS OR FACES WHERE WE
BRING SUMMER STUDENTS AHERE AND
THEY DO FULL-TIME RESEARCH AND I
MENTOR FOR A PREP PROGRAM AT
U.C. DAVIS AND I HAVE A MENTOR
FOR BIO GAP AND A PROGRAM CALLED
STAR AN THESE ARE UNDERGRADUATE
AND PROFESSIONAL SCHOOL PROGRAMS
FOR STUDENTS TO GAIN RESEARCH.
FOR ME,
[NO AUDIO]
AND SO JUST TO QUICKLY TOUCH ON
THE MAJOR QUESTIONS IN MY LAB,
THIS IS ROXY MY BULLDOG AND
NOTING THE DIFFERENCES IN THE
FORMATION OF THE CRANIAL FACIAL
STRUCTURES IN THE SAME ORGANISMS
ALLOW FOR VARIETY AND KNOWING
SOMETIMES WHEN THE PROCESSES GO
WRONG YOU CAN GET CLEFT PALATE
AND IT'S IMPORTANT TO UNDERSTAND
WHAT ALLOWS THE CELLS TO FORM
NORMALLY SO WE CAN UNDERSTAND
WHAT'S GOING WRONG IN THE
DEVELOPMENT DISORDER AND CRUCIAL
TO UNDERSTAND WHETHER THE
MECHANISM CONSERVED ACROSS
SPECIES.
DO CHICKEN AND AXOLTLS CONTROL
OTHER ORGANISMS?
AND ONE OF THE QUESTIONS I ASKED
IS WHETHER OR NOT EXPOSURES TO
THINGS LIKE ENVIRONMENTAL TOXINS
AND/OR MEDICATIONS IF EXPOSURES
DURING DEVELOPMENT CAN AFFECT
THE FORMATION OF NEURAL CREST
CELLS WHICH WOULD AFFECT NEURAL
CREST DERIVATIVES.
MY JOURNEY HAS BEEN VERY DIRECT
HONESTLY THOUGH I DIDN'T KNOW
WHERE I WAS GOING I WAS LUCKY
ENOUGH TO HAVE OPPORTUNITIES AND
I TOOK THEM AND FOLLOWED THROUGH
WITH THEM
[NO AUDIO]
AND YOU MAY NOT BE SURE ABOUT IT
BUT MANY TIMES IF YOU FOLLOW
THROUGH WITH THAT IT WILL GET
YOU WHERE YOU WANT TO GO AND
THAT'S BEEN SUCH A BIG DEAL FOR
ME AND ALL THE OTHER PRESENTERS
HAVE DONE SUCH A GOOD JOB OF
GIVING YOU THE BEST ADVICE TO
GET TO WHERE YOU'D WANT TO GO
AND SO WITH THAT I WOULD LIKE TO
THANK FOR THE INVITATION TO
SPEAK AND HAPPY TO TAKE ANY
QUESTION ANY JOURNEY.
QUESTIONS ABOUT MY JOURNEY.
AS A HIGH SCHOOL STUDENTS I WAS
INTERESTED IN PHARMACY AND I
WENT TO PHARMACY SCHOOL AND
DROPPED THAT RESEARCH AND SO I
CHANGED MY CAREER PATH BASED ON
THE OPPORTUNITY TO HAVE
RESEARCH.
JUST BEING EXPOSED TO DIFFERENT
OPPORTUNITIES, DIFFERENT
QUESTIONS MY MOM WOULD TAKE ME
TO THE NATURE CENTER AND HOW TO
THOSE EXPERIENCES OPENED MY EYES
TO DIFFERENT THINGS.
DEFINITELY OPPORTUNITIES.
>>AS A MENTIONED IN HIGH SCHOOL
I THOUGHT THAT I WANTED TO BE A
MEDICAL DOCTOR BUT IT WAS FOR
THE WRONG REASONS.
AT THAT TIME MY FAMILY WAS A BIG
INFLUENCE IN WANTING ME TO GO TO
MEDICAL SCHOOL BUT I WAS
UNFORTUNATE THAT I DIDN'T GET
ACCEPTED TO THOSE PROGRAMS AND I
WAS AS DR. BURTON TALKED ABOUT
OPPORTUNITIES.
I HAD EXPOSURE TO DOING RESEARCH
AND WE HAD A RESEARCH SCIENCE
CLASS IN MY HIGH SCHOOL AND THEN
I WENT ON TO M.I.T. WHERE 70% TO
80% OF UNDERGRADS DO RESEARCH
BECAUSE THEY HAVE FUNDING
OPPORTUNITIES.
SO JUST NOT BEING AFRAID TO TRY
NEW THINGS AND TAKING VRCHB OF
ADVANTAGE OF THE OPPORTUNITIES
AND ADVANTAGE OF NETWORKING
OPPORTUNITIES.
I'M AN INTROVERT.
I DON'T REALLY LOVE CHITCHATS
BUT THE CONVERSATIONS YOU HAVE
WHERE SOMEBODY BRINGS UP
SOMETHING THAT CAN CHANGE YOUR
DIRECTION IN LIFE I THOUGHT I'D
APPLY TO A Ph.D. BECAUSE MANY
PEOPLE WENT TO DO STRAIGHT
[NO AUDIO]
TALKING TO PEOPLE FROM ALL KINDS
OF CAREER PATHS.
THERE'S NO WRONG ANSWER.
I ALSO THINK THAT GOING WITH
YOUR GUT FEELING IS SOMETHING
THAT WAS TOLD TO ME WHEN I
GAINED RESIDENCY AND A SAID NO,
I NEED AN EXCEL SPREAD SHEET AND
NEED TO BE CHECKING OFF WHY I'M
DOING SOMETHING BUT GUT FEELINGS
ARE PRETTY STRONG AND GOING WITH
WHERE YOUR HEART LEADS YOU AND
FIGURING OUT YOUR PASSION.
>>DR. ROGERS?
>>I WOULD AGREE.
I AGREE WITH EVERYTHING THE
OTHERS SAID.
HONESTLY, IN HIGH SCHOOL THERE'S
SO MUCH TIME AND I THINK YOUR
CHILD WILL FIND OUT IN COLLEGE,
TAKE THE OPPORTUNITIES, DO A
RESEARCH VOLUNTEER IF THEY
CONDITION OR SEE IF THEY CAN GET
A JOB BECAUSE LET'S BE HONEST,
RESEARCH IS HARD AND IT ISN'T
FOR EVERYBODY.
IT CAN BE AMAZING AND IT CAN BE
HEARTBREAKING BUT IF YOU HAVE A
CHILD REALLY INTERESTED IN
SCIENCE I WOULD SAY TRY
DIFFERENT TYPES OF SCIENCE
BECAUSE IT'S NOT ALL THE SAME.
DOING MICROBIOLOGY IS VERY
DIFFERENT THAN CELL BIOLOGY OR
USING CELL ORGANISMS.
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AND TAKE TIME TO SEE IF THAT'S
WHAT THEY WANT TO DO.
>>THANK YOU.
DR. GHOSAL.
>>CAN YOU HEAR ME NOW?
>>YES, I CAN.
>>THE POSITION I'M AT RIGHT NOW
AND A CANNOT THINK LIKE DURING
MY HIGH SCHOOL IT WAS WAY
DIFFERENT AIMS THAT I HAD 12, 30
YEARS BACK.
I WOULD SAY FOCUS ON THE SHORT
TERM GOALS.
I KNOW
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-- AND BASED ON MY CURRENT
PREFERENCES LIKINGS AS ALL THE
OTHER CO-PANELISTS MENTIONED.
RESEARCH IS NOT FOR SOMEONE EVEN
IF SOMEONE IS THINKING THEY
MIGHT BE ABLE TO -- THEY MAY BE
CONFIDENT GOING FOR RESEARCH AT
HIGH SCHOOL IT MIGHT CHANGE DOWN
THE LINE OR CAN HAPPEN THE OTHER
WAY AROUND.
I WOULD SAY DON'T THINK FOR THE
LONG-TERM GOAL AT THE MOMENT.
>>GREAT.
THANK YOU SO MUCH.
THE NEXT QUESTION IS REGARDING
UNDER REPRESENTED STUDENTS IN
S.T.E.M.
THE QUESTION RELATES TO WHAT
ADVICE WOULD YOU HAVE FOR THOSE
STUDENTS WHO ARE REALLY CAUTIOUS
ABOUT STEPPING OUTSIDE OF THEIR
COMFORT ZONES.
WHAT ADVICE WOULD YOU GIVE THEM?
DR. BURTON?
>>THIS IS A GREAT QUESTION.
TO STEP OUT OF YOUR COMFORT
ZONE, DO IT A LITTLELY -- DO IT
LITTLE BY LITTLE.
AT THE END OF THE DAY I'M AN
EXTROVERTED INTROVERT.
I WAS THE ONLY BLACK PERSON IN
MY CLASSES IN COLLEGE I DIDN'T
HAVE ANYONE WHO LOOKED LIKE ME.
NO ONE WAS SAY DO YOU NEED HELP?
I HAD TO GO GET HELP.
IT'S THE SAME THING WITH A PH.D.
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MADE YOU UNCOMFORTABLE BUT YOU
HAVE TO PUT YOURSELF OUT THERE
SO THAT YOU CAN SUCCEED.
YOU HAVE TO MAKE A COMMUNITY OF
PEOPLE.
I WOULD CALL MY MOM ALMOST EVERY
DAY AT GRAD SCHOOL SAYING I
WANTED TO QUIT.
SHE WAS PART OF MY COMMUNITY.
WE WERE GOING THROUGH GRAD
SCHOOL TOGETHER AND WE WOULD CRY
ON EACH OTHER'S SHOULDER AND YOU
BUILD THAT COMMUNITY TO HELP YOU
LEAN ON SO YOU CAN START TO GET
THE CONFIDENCE SO THAT YOU CAN
GO OUT AND MEET PEOPLE AND GET
THE INFORMATION AND/OR WHATEVER
YOU MAY NEED FROM THE
INSTITUTION, YOUR MENTOR, YOUR
COLLABORATORS, JUST PUT YOURSELF
OUT THERE BUT DO IT LITTLE BY
LITTLE.
>>I'LL SUPPORT THAT.
GOING OUT OF YOUR COMFORT ZONE
COULD BE HARD FOR SOME SPECIFIC
PEOPLE AND I REALLY WANT TO ECHO
WHAT DR. BURTON MENTIONED SMALL
STEPS AT A TIME.
BUT
I THINK ONE OF THE THINGS THAT A
LOT OF US
-- SO I THINK LOOKING OUT FOR A
ROLE MODEL IS USEFUL BUT WHETHER
WE SHOULD FIND SOMEONE FOR THEM
THAT COULD BE A VERY SUBJECTIVE
THING, I GUESS.
>>THANK YOU.
DR. TANG GIRDWOOD.
>>
[NO AUDIO]
THE MENTORSHIP GROUP WE'RE
CURRENTLY WRITING A PAPER ON THE
IMPORTANCE OF PEER MENTORSHIP.
NOT EVERYONE IS GOING TO LOOK
LIKE YOU IF YOU'RE FROM AN UNDER
REPRESENTED GROUP BUT TRYING TO
FIND PEER MENTORS WHO HAVE A
MORE SHARED EXPERIENCE AND
SHARING WHAT IT'S BEEN LIKE IS
LIKELY PRETTY USEFUL.
>>I AGREE WITH EVERYBODY AND I
WOULD ADD TO THAT THAT FOR
HISTORICALLY EXCLUDED AND
MINORITIZED GROUPS, ACADEMIA
DOES NOT LOOK LIKE YOU RIGHT NOW
SO IT'S IMPORTANT TO FIND ALLIES
AND SUPPORTERS WHEREVER YOU CAN
AND SO KNOW THAT YOU WILL FIND
THERE ARE PEOPLE WHO ARE SAFE
AND PEOPLE WHO YOU CAN BE
YOURSELF WITH AND PEOPLE WHO
WILL ACCEPT YOU FOR ALL OF YOU
AND THEY DON'T HAVE TO LOOK LIKE
YOU SO YOU CAN FIND A COMMUNITY
RIGHT NOW AND WE CAN CONTINUE
BUILDING OUR COMMUNITY AS TIME
GOES ON.
>>GREAT, THANK YOU SO MUCH.
DR. GHOSAL I THINK YOU TOUCHED
ON THIS, ON FAILURES AND
SELF-DOUBT IN YOUR TALK.
SO ONE OF THE QUESTIONS FROM THE
AUDIENCE MEMBERS IS DURING YOUR
CAREER JOURNEY, HAVE YOU EVER
FELT THAT YOU WERE NOT ON THE
RIGHT PATH OR LIKE YOU DID NOT
BELONG IN YOUR FIELD?
AND IF SO HOW DID YOU OVERCOME
THAT FEELING?
>>I'M FIND IF DR. BURTON SPEAKS
FIRST.
I CAN FOLLOW.
>>GO AHEAD.
>>I FELT LIKE I DIDN'T BELONG
SEVERAL TIMES.
YOU JUST HAVE TO DIG IN AND GO
TO YOUR WHY.
SO WRITING THAT STATEMENT LIKE
YOUR MISSION STATEMENT AND
GETTING BACK TO THAT AND
REMEMBERING THAT YOU HAVE THE
SKILLS JUST LIKE EVERYONE ELSE.
YOU HAVE TO BELIEVE IN YOURSELF
AND THAT HELPS YOU OVERCOME SOME
OF THAT.
SOMETIMES YOU HAVE TO CRY IT
OUT, TALK TO SOMEONE, GET SOME
REASSURANCE AND JUST KEEP IT
MOVING.
BUT IT DOES CREEP IN.
IT DOES CREEP IN.
>>DR. GHOSAL DO YOU HAVE MORE
ADVICE TO ADD TO WHAT YOU SAID
PREVIOUSLY?
>>MENTORS HELP A LOT IN THIS
REGARD.
I'M NOT IN THE POSITION FIVE
YEARS BACK I DIDN'T THINK OF IT.
I ALWAYS PLANNED NOT TO BE IN A
TEACHING POSITION AND STILL I
HAVE TO TEACH.
I WAS FRIGHTENED TO MEET A BIG
ROOM FULL OF STUDENTS.
I THOUGHT I'D BE WASTING THEIR
HARD SPENT MONEY.
WHAT IF I FAIL TO DELIVER OR
PROVIDE KNOWLEDGE THEY NEED.
I WAS ALWAYS IN THAT DOUBT.
MY MENTORS HELPED ME.
[NO AUDIO]
THEY ALL SAID YOU SHOULD NOT
WORRY ABOUT THAT AT THIS MOMENT.
JUST TRY THIS.
I GOT AN OPPORTUNITY TO TEACH.
IT CHANGED MY PERSPECTIVE.
IT'S SO REWARDING TO CONNECT
WITH A STUDENT AND CONVEY THE
KNOWLEDGE YOU HAVE AND WHAT THEY
ARE SEEKING.
I HAD THE SELF-DOUBT.
I WAS LACKING CONFIDENCE.
MY MENTORS PROVIDED THAT AND
THEN I GOT THE COURAGE TO TRY IT
OUT AND NOW I AM WAY MORE
COMFORTABLE IN REACHING OUT TO
NEW STUDENTS.
GOOD MENTORSHIP CAN HELP THAT.
>>YES, IT COMES DOWN TO GOOD
MENTORING.
DR. TANG GIRDWOOD.
>>I WOULD SAY THERE MANY TIMES
EVER SINCE I SINCE I BECAME PART
OF THE PROGRAM WHERE THEY JUDGE
THE SUCCESS OF THE PROGRAM INTO
HOW MANY GRADUATES GET R01 I
QUESTIONED DID I PICK THIS PATH
BECAUSE I FELT AN OBLIGATION TO
DO WHAT IS CONSIDERED A
SUCCESSFUL APPLICANT AND ALSO
WHY I TOOK AN EXTRA YEAR TO DO
[NO AUDIO]
ALL THE DIFFERENT PATHWAYS AND
WASN'T DOING SOMETHING JUST
BECAUSE I FELT OBLIGATED.
WE SHARE CONCERNS WITH MENTORS
AND I THINK IT'S HELPFUL TO KNOW
OTHER PEOPLE HAVE -- IF YOU
THINK YOU'RE THE ONLY ONE HAVING
IT YOU ARE NOT AND FINDING A
GROUP OF PEOPLE YOU CAN WHETHER
IT'S TRADITIONAL MENTORS OR PEER
MENTORS TO SHARE YOUR CONCERNS.
>>THANK YOU FOR THAT.
DR. ROGERS?
>>I HAVE FELT THIS CONSTANTLY
IN MY CAREER.
I HAVE HAD IMPOSTER SYNDROME AND
FELT LIKE I DON'T BELONG.
RECENTLY WHEN I TRANSITIONED
FROM A PRIMARILY UNDERGRADUATE
INSTITUTION TO THIS PLACE, THIS
RESEARCH INSTITUTION I WAS READY
TO QUIT BECAUSE I FELT LIKE I
CAN'T HACK IT.
I DONT BELONG HERE.
HONESTLY IT WAS MY PEERS THAT
REACHED OUT TO ME AND UNKNOWN
SPONSORED AND MENTORS FROM
TWITTER.
ONE TWITTER COMPLAINT ABOUT HOW
I FELT IT WITH A BIT WORKING HAD
PEOPLE REACHING OUT TO ME I
DIDN'T KNOW PERSONALLY BECAUSE
THEY FELT I WAS VALUABLE ENOUGH
TO STAY AND THAT CHANGED MY
PERSPECTIVE ON EVERYTHING.
[NO AUDIO]
AND TRYING TO MAKE A HUGE
DIFFERENCE IN THE LIVES OF
STUDENTS OR DOING THE EXTRA WORK
AND I THINK I CAN MAKE A
DIFFERENCE THERE SO IT'S WORTH
IT FOR ME TO IMPROVE AND HELP
OTHERS TO HELP GET BETTER AT THE
THINGS THAT MAYBE I'M NOT SO
GREAT AT.
>>WELL, THANK YOU.
I BELIEVE WITH THAT WE HAVE COME
TO THE END OF OUR TIME.
I WANT TO THANK THE PANELISTS
FOR A VERY ENGAGING AND
INFORMATIVE DISCUSSION AND THANK
YOU EVERYBODY FOR JOINING US AT
OUR 60th ANNIVERSARY
CELEBRATIONS.
-- THANK YOU FOR SHARING YOUR
STORIES AND NOW TO QUOTE EUNICE
KENNEDY SHRIVER IT'S MY JOB TO
MOVE ON AND I'D LIKE TO THANK
OUR PANELISTS AND MODERATORS AND
ORGANIZERS.
PAUL WILLIAMS, CHRISTINA STYLE,
MARIA YOUNG AND THE REST OF THE
TEAM IN NICHD'S OFFICE OF
COMMUNICATIONS.
I'D ALSO LIKE TO THANK YOU, THE
AUDIENCE, FOR PARTICIPATING AND
FOR YOUR INSIGHTFUL QUESTIONS TO
OUR PRESENTERS.
I HOPE THAT WE'VE GIVEN YOU A
SENSE OF THE DEPTH AND BREADTH
OF OUR RESEARCH PORTFOLIO AND
THAT WE'VE SPARK YOUR
IMAGINATION AND HELPED YOU
ENVISION WHAT THE NEXT FIVE TO
10 YEARS OF OUR SCIENCE MAY LOOK
LIKE.
NICHD'S INDEED A PLACE WHERE THE
FUTURE IS BRIGHT AND WHERE OUR
RESEARCH CAN HAVE
[NO AUDIO]
THANK YOU ALL AGAIN AND HERE'S
TO ANOTHER 60 YEARS OF
INNOVATION.
HAVE A GREAT EVENING, EVERYBODY.