THANK YOU SO MUCH FOR JOINING US
TODAY.
I'M DR. DIANA BIANCHI, DIRECTOR
OF THE NICHD, CELEBRATING OUR
60TH ANNIVERSARY THIS YEAR.
THIS IS THE FIRST MEETING OF THE
STILLBIRTH WORKING GROUP OF
NICHD'S NATIONAL ADVISORY
COUNCIL.
I HAVE TO APOLOGIZE, I'M GETTING
OVER A COLD.
SO I MIGHT NEED TO CLEAR MY
THROAT OCCASIONALLY.
I'M JOINED TODAY BY THE TWO
WONDERFUL CO-CHAIRS OF THIS
WORKING GROUP.
THE PEDIATRICIAN IN CHIEF AND
THE CHAIR OF THE DEPARTMENT OF
PEDIATRICS AT EMORY UNIVERSITY,
AND AT CHILDREN'S HEALTHCARE
ATLANTA.
AND DR. UMA REDDY, VICE CHAIR OF
RESEARCH AND PROFESSOR OF
OBSTETRICS AND GYNECOLOGY IN THE
DEPARTMENT OF OBSTETRICS AND
GYNECOLOGY AT COLUMBIA
UNIVERSITY.
SINCE THE 1940s, IMPROVEMENTS
IN MATERNITY CARE HAVE LED TO
DRAMATIC REDUCTION IN THE
OCCURRENCE OF STILLBIRTH.
HOWEVER, MORE RECENTLY THAT
DECLINE HAS SLOWED OR HALTED.
IN 2020, APPROXIMATELY 21,000
STILLBIRTHS ARE REPORTED IN THE
UNITED STATES, AND EACH ONE OF
THEM REPRESENTS A DEVASTATING
LOSS FOR THE PARENT OR THE
FAMILY.
THE STILLBIRTH WORKING GROUP
WILL ADDRESS THESE CRITICAL
NEEDS BY FOCUSING ON THE CURRENT
BARRIERS TO COLLECTING DATA ON
STILLBIRTHS THROUGHOUT THE
UNITED STATES.
AS WELL AS COMMUNITIES AT HIGHER
RISK OF STILLBIRTH, THE
PSYCHOLOGICAL IMPACT AND
TREATMENT FOR MOTHERS FOLLOWING
STILLBIRTH, AND THE KNOWN RISK
FACTORS FOR STILLBIRTH.
WE'LL HEAR MORE ABOUT THE
CONTEXT AND DETAILS OF THE
GROUP'S CHARGE FROM DR. NATASHA
WILLIAMS LATER IN THE AGENDA.
STILLBIRTH RESEARCH FALLS WITHIN
NICHD'S MISSION TO LEAD RESEARCH
AND TRAINING TO UNDERSTAND HUMAN
DEVELOPMENT, IMPROVE
REPRODUCTIVE HEALTH, ENHANCE THE
LIVES OF CHILDREN AND
ADOLESCENTS, AND OPTIMIZE THE
ABILITIES FOR ALL.
IN PARTICULAR, RESEARCH TO
BETTER UNDERSTAND HUMAN
DEVELOPMENT AND TO PROMOTE
HEALTHY PREGNANCIES FALLS WITHIN
THE RESEARCH THEMES OF OUR MOST
RECENT 2020 STRATEGIC PLAN.
HOWEVER, UNDERSTANDING MORE
ABOUT STILLBIRTH REPRESENTS A
DIFFICULT CHALLENGE.
THE CAUSES OF STILLBIRTH ARE
VARIED AND COMPLEX, WHILE
UNIFORMLY TRAGIC, STILLBIRTH IS
A RARE EVENT, MAKING ANALYSIS
DIFFICULT IF A STUDY LACKS A
LARGE NUMBER OF PARTICIPANTS.
IN ADDITION, EACH STATE MAY
COLLECT DATA DIFFERENTLY, WHICH
CAN COMPLICATE COMPARISONS
ACROSS THE UNITED STATES.
NICHD HAS MADE SOME PROGRESS IN
STILLBIRTH RESEARCH, BUT MORE
CAN BE DONE.
FOR EXAMPLE, NICHD SUPPORTED THE
STILLBIRTH COLLABORATIVE
RESEARCH NETWORK.
THIS STUDY RECRUITED
PARTICIPANTS FROM 59 URBAN AND
RURAL HOSPITALS IN FIVE
GEOGRAPHIC AREAS IN THE U.S.,
AND THE RESULTS WERE ABLE TO
CONFIRM A NUMBER OF SUSPECTED
CAUSES OF STILLBIRTH, AND
SUGGEST AVENUES FOR FUTURE
FOCUSED PROJECTS.
ALTHOUGH FUNDING SUPPORT ENDED
SEVERAL YEARS AGO, DATA FROM THE
STILLBIRTH NETWORK HAVE BEEN
SHARED WITH THE SCIENTIFIC
COMMUNITY THROUGH NICHD'S DATA
AND SPECIMEN HUB, OTHERWISE
KNOWN AS DASH.
NETWORK DATA HAVE BEEN USED
FREQUENTLY OVER THE PAST DECADE
TO ANALYZE THE CAUSES OF
STILLBIRTH AND SPECIMENS FROM
THE STUDY HAVE BEEN ANALYZED
USING TECHNOLOGIES NOT AVAILABLE
PREVIOUSLY.
THE MOST RECENT PUBLICATION
USING THESE DATA APPEARED LAST
MONTH, AND AT LEAST FOUR
SCIENTIFIC ARTICLES USING THESE
DATA WERE PUBLISHED IN 2022
ALONE.
SIMILARLY, OTHER NICHD NETWORKS
AND COHORT STUDIES IN
OBSTETRICS, FOR EXAMPLE, THE
MATERNAL-FETAL MEDICINE UNIT'S
NETWORK AND THE GLOBAL NETWORK
FOR WOMEN'S AND CHILDREN'S
HEALTH HAVE SUPPORTED STILLBIRTH
RESEARCH ALONG WITH INVESTIGATOR
INITIATED STUDIES.
AND YOU'LL HEAR MORE ABOUT THE
ANALYSIS IN THE PORTFOLIO LATER
ON IN THE AGENDA.
NICHD HAS ALSO SUPPORTED THE
HUMAN PLACENTA PROJECT, WHICH
AIMED TO UNDERSTAND PLACENTAL
DEVELOPMENT, FUNCTION, AND
STRUCTURE THROUGHOUT ALL STAGES
OF PREGNANCY.
THE MAIN APPROACH WAS TO DEVELOP
SAFE, EFFECTIVE WAYS TO ASSESS
PLACENTAL HEALTH IN REALTIME.
RESEARCH TO BETTER DISCERN HOW
THE PLACENTA WORKS WILL HELP US
TO UNDERSTAND STILLBIRTH
PATHOPHYSIOLOGY AND MECHANISMS
AND SERVE AS THE FOUNDATION TO
INFORM FUTURE STILLBIRTH
RESEARCH.
WE AT NICHD APPRECIATE THIS
OPPORTUNITY TO LOOK MORE CLOSELY
AT THE LANDSCAPE OF STILLBIRTH
RESEARCH, AND WE APPRECIATE THE
PROFOUND, LONG-TERM CONSEQUENCES
ON THE HEALTH OF THE PARENT AND
THE FAMILY.
AND WE AIM TO COLLECT WISDOM
FROM THE GROUP TO INFORM A PATH
FORWARD.
I'D LIKE TO THANK THOSE WHO
HELPED TO ORGANIZE THIS MEETING
AND THOSE WHO ARE SUPPORTING
THIS WORKING GROUP, AS WELL AS
EACH ONE OF YOU, THE MEMBERS OF
THE WORKING GROUP, FOR DEVOTING
YOUR TIME TO THIS VERY IMPORTANT
ENDEAVOR.
AND NOW I'D LIKE TO TURN THINGS
OVER TO DR. LUCKY JAIN TO LEAD
THE INTRODUCTIONS.
LUCKY?
>>THANK YOU, DR. BIANCHI.
GOOD AFTERNOON, EVERYONE.
SO BEFORE I GET TO
INTRODUCTIONS, DIANA, LET ME
JUST SAY THAT THIS TOPIC OF
STILLBIRTH IS SO IMPORTANT.
AS A NEONATOLOGIST, I CAN TELL
YOU THAT FAMILIES WHO HAVE HAD
ONE STILLBIRTH, THE
PSYCHOLOGICAL IMPACT OF THAT
STILLBIRTH ON THAT MOTHER AND
THE FAMILY IS SO PROFOUND.
IT GOES BACK TO THE DAYS WHEN
MRS. JACKIE KENNEDY HAD A
STILLBIRTH, AND WE ALL KNOW FROM
THAT OCCURRENCE HOW THE
REPERCUSSIONS OR THE IMPACT OF
THAT ONE SINGLE STILLBIRTH
STAYED WITH MRS. KENNEDY FOR
SUCH A LONG TIME.
SONATA SHA OR MAHOGANY, CAN YOU
SHARE WITH ME THE ROSTER OF THE
MEMBERS WHO ARE ATTENDING?
>>YES, DR. JAIN, I EMAILED TO
YOU AND AN UPDATE, I DO SEE THAT
DR. SILVER IS ON THE CALL.
I REMOVED HIM BUT I DO SEE THAT
HE IS HERE AS WELL.
>>PERFECT.
OKAY.
SO LET ME INTRODUCE THE MEMBERS
OF THE WORKING GROUP THAT HAS
BEEN PUT TOGETHER IN CONJUNCTION
WITH THE NICHD.
DR. STEPHANIE LEONARD FROM
STANFORD UNIVERSITY.
STEPHANIE?
>>I'M HERE.
HI.
>>THANK YOU SO MUCH FOR JOINING
US.
DR. JENNA NOBLES FROM THE
UNIVERSITY OF WISCONSIN-MADISON.
>>I'M HERE.
HELLO.
>>GREAT.
THANK YOU SO MUCH, JENNA.
DR. WALLACE FROM TULANE
UNIVERSITY SCHOOL OF PUBLIC
HEALTH?
>>SORRY.
YES, I'M HERE, HELLO.
>>GREAT.
I DON'T NEED EVERYONE TO UNMUTE
AND RESPOND.
I JUST WANTED TO MAKE SURE THAT
YOU ALL ARE THERE AND VISIBLE TO
THE AUDIENCE.
THERE ARE ABOUT A HUNDRED PEOPLE
WHO HAVE LOGGED IN TO LISTEN TO
THIS IMPORTANT PROCEEDING.
DR. BIANCHI MENTIONED DR. REDDY
AS THE CO-CHAIR.
UMA IS FROM COLUMBIA UNIVERSITY,
AND I'M DELIGHTED TO HAVE HER AS
A PARTNER.
DR. DEB CONWAY FROM THE
UNIVERSITY OF TEXAS, THE
SAN ANTONIO HEALTH CENTER, IS
HERE WITH US.
THEN DR. DON DUDLEY, UNIVERSITY
OF VIRGINIA.
DR. MONICA WOU WOJCIK.
DR. SONIA RAS MUCIN FROM JOHN
HOPKINS SCHOOL OF MEDICINE.
DR. DENISE JAMISON FROM EMORY
UNIVERSITY.
DR. AMANDA COHEN FROM THE CDC,
SHE'S DIRECTOR OF THE DIVISION
OF BIRTH DEFECTS.
DR. CARLA DESISTO, ALSO FROM THE
CDC, THE NATIONAL CENTER FOR
CHRONIC DISEASE PREVENTION AND
HEALTH PROMOTION.
AND ITS DIVISION OF REPRODUCTIVE
HEALTH.
DR. ADA DEEK FROM THE CDC,
AGAIN, THE DIVISION OF
REPRODUCTIVE HEALTH.
DR. ISABELLE HORAN, BRANCH CHIEF
OF THE REPRODUCTIVE STATISTICS
BRANCH AND DIVISION OF -- IN THE
DIVISION OF VITAL STATISTICS.
DR. KENA LAU, IHS, MATERNAL
CHILD HEALTH CONSULTANT.
AND THEN WE HAVE MR. ANDREW
FULLERTON, THE DEPUTY FEDERAL
DIRECTOR REPRESENTATIVE FROM
MARCH OF DIMES.
AND FINALLY, DR. KATHRYN
LADISHAU FROM HRSA, THE MATERNAL
CHILD HEALTH BUREAU.
SO DIANA, I HOPE I COVERED
EVERYONE.
IS THERE ANYONE THAT I MISSED?
>>DR. JAIN, IF I MAY, DR. WANDA
BARFIELD AND DR. ROBERT SILVER.
I SENT THOSE TWO NAMES
SEPARATELY.
>>OH, MY GOODNESS.
HOW CAN I FORGET DR. BARFIELD?
WELCOME, DR. BARFIELD, AND
DR. BOB SILVER IS SUCH A
WELL-KNOWN NAME IN THIS FIELD OF
STILLBIRTH PREVENTION.
SO BOB, WE'RE DELIGHTED TO HAVE
YOU JOIN THIS WORKING GROUP AS
WELL.
SO WITH THAT, WITH THOSE
INTRODUCTIONS, I'LL INVITE
DR. NATASHA WILLIAMS TO START
THE PROCEEDINGS BY DISCUSSING
THE BACKGROUND, GOALS, THE
TIMELINE AND WHAT WE EXPECT OUT
OF THE REPORT COMING OUT OF THIS
WORKING GROUP.
NATASHA?
>>YES.
>>CAN YOU FIRST INTRODUCE
YOURSELF TO THE GROUP, AND THEN
IT WILL BE WONDERFUL AND YOU GET
US STARTED.
>>YES, THANK YOU, DR. JAIN.
MY NAME IS NATASHA WILLIAMS.
I'M THE CHIEF OF LEGISLATION AND
PUBLIC POLICY AT NICHD.
THANK YOU, I'M GLAD TO BE HERE
TODAY.
AND I WOULD LIKE TO GIVE YOU A
BACKGROUND REGARDING THIS
MEETING.
THE CREATION OF THE TASK FORCE
ON STILLBIRTH WAS DESCRIBED IN
THE FISCAL YEAR 2022, U.S. HOUSE
OF REPRESENTATIVES REPORT
LANGUAGE, AND FUNDED IN THE
CONSOLIDATED APPROPRIATIONS ACT
OF 2022, WHICH BECAME LAW ON
MARCH 15TH.
THIS IS PUBLIC LAW 117-103.
THE U.S. DEPARTMENT OF HEALTH
AND HUMAN SERVICES REQUESTED THE
NICHD TO LEAD THIS TASK FORCE.
THE GOALS OF THE TASK FORCE AS
PER THE FY 22 HOUSE REPORT
LANGUAGE ARE AS FOLLOWS.
THE TASK FORCE SHOULD INCLUDE
THE CDC, NIH, OUTSIDE SPECIALTY
ORGANIZATIONS, AND MATERNAL AND
FETAL MEDICINE SPECIALISTS.
THIS TASK FORCE SHOULD FOCUS ON
THE CURRENT BARRIERS TO
COLLECTING DATA ON STILLBIRTHS
THROUGHOUT THE U.S., COMMUNITIES
AT HIGHER RISK OF STILLBIRTH,
THE PSYCHOLOGICAL IMPACT AND
TREATMENT FOR MOTHERS FOLLOWING
STILLBIRTH, AND KNOWN RISK
FACTORS FOR STILLBIRTH.
TIMELINE.
THE TASK FORCE TO PROVIDE A
REPORT ON THESE ISSUES WITHIN A
YEAR OF ENACTMENT OF THIS ACT,
WHICH WAS ON MARCH 15TH, 2022.
FUTURE MEETINGS WILL BE HELD ON
NOVEMBER 22ND AND DECEMBER 9TH.
THE REPORT.
THE PRELIMINARY REPORT WILL BE
PRESENTED TO NICHD'S NATIONAL
ADVISORY COUNCIL IN
JANUARY 2023.
THE FINAL REPORT WILL BE
SUBMITTED TO HHS IN MARCH OF
2023.
THANK YOU, AND PLEASE LET ME
KNOW IF THERE ARE ANY QUESTIONS.
>>THANK YOU, DR. WSSMENTS ANY .
ANY QUESTIONS FOR DR. WILLIAMS?
THERE ARE TWO WAYS OF ASKING
QUESTIONS.
YOU CAN PUT THEM IN THE CHAT
BOX, AND FOR THE WORKING GROUP
MEMBERS, YOU'RE WELCOME TO
UNMUTE YOURSELF AND ASK
QUESTIONS AS WE PROCEED.
IF THERE ARE NO QUESTIONS FOR
DR. WILLIAMS, I WILL INVITE
DR. MONICA LONGO TO START THE
SESSION ON IDENTIFICATION OF
FEDERAL ACTIVITIES RELATED TO
THIS TOPIC OF STILLBIRTH.
DR. LONGO?
>>HI.
THANK YOU.
>>HI.
WILL YOU PLEASE INTRODUCE
YOURSELF AND THEN INVITE
SPEAKERS YOU'VE ASSEMBLED FOR
THIS PANEL.
>>OF COURSE.
THANK YOU, EVERYONE.
GOOD AFTERNOON, AND I AM MONICA
LONGO.
I AM CHIEF MEDICAL OFFICER AT
NICHD AND I'M A MATERNAL-FETAL
MEDICINE AS A BACKGROUND.
I WOULD LIKE TO THANK YOU FOR
ACCEPTING TO BE PART OF THIS
STILLBIRTH TASK FORCE.
VERY IMPORTANT ACTIVITY, AS
DR. JAIN, DR. BIANCHI AND
EVERYONE HAS SAID.
I WOULD LIKE TO INTRODUCE NOW
DR. -- OFFICE OF SCIENCE POLICY,
AND SHE WILL PRESENT ON THE
STILLBIRTH PUBLICATION.
I GIVE TO YOU.
THANK YOU.
>>THANK YOU.
AS MONICA JUST TOLD YOU, I'M
SARAH GLAVIN.
I'M PRESENTING TODAY ON BEHALF
OF OUR ANALYSIS TEAM IN THE
OFFICE OF SCIENCE POLICY,
PLANNING, AND EVALUATION AT THE
NICHD.
I AM GOING TO SHARE MY SCREEN AS
SOON AS I CAN CLICK THE CORRECT
BUTTON.
AND CAN YOU SEE THE SLIDES HERE?
>>YES, WE CAN.
BUT YOU'RE NOT IN PRESENTER
MODE.
>>YES, I'M TRYING TO -- FOR
SOME REASON MY MOUSE DOES NOT
SEEM TO COOPERATE.
WITH ME.
>>AS USUAL.
>>SO THAT SHOULD DO IT.
IS THAT RIGHT?
>>NO.
>>NO?
STILL NOT.
>>IS THAT RIGHT?
>>YES.
YOU GOT IT.
>>OKAY.
>>THANK YOU.
>>ALL RIGHT, THANK YOU VERY
MUCH.
NATASHA DID A GREAT JOB
DESCRIBING THE CONGRESSIONAL
MANDATE, SO I'M NOT GOING TO
SPEND A LOT OF TIME TALKING
ABOUT IT.
JUST TO LET YOU KNOW THAT THIS
WAS THE KEY SENTENCE IN THE
MANDATE, THAT WE LOOK AT
BARRIERS TO COLLECTING DATA,
COMMUNITIES AT HIGH RISK,
PSYCHOLOGICAL IMPACT AND
TREATMENT, AND KNOWN RISK
FACTORS.
AND THIS WAS THE SENTENCE THAT
WE USED TO GUIDE THE ANALYSIS
THAT WE'RE GOING TO PRESENT TO
YOU TODAY.
YOU ARE EXPERTS IN THIS FIELD,
SO I DON'T WANT TO SPEND A LOT
OF TIME ON INTRODUCTIONS, BUT
THERE ARE A COUPLE OF PIECES OF
INFORMATION THAT ARE REALLY
IMPORTANT FOR AND HAVE
IMPLICATIONS FOR THE ANALYSIS TO
FOLLOW.
SO JUST TO SET THE STAGE A BIT,
IT IS USEFUL FOR US TO REMEMBER
THAT STILLBIRTH IS AN OUTCOME AS
OPPOSED TO A DISEASE OR A
CONDITION, AND YOU'LL SEE LATER
ON THAT THAT INFLUENCES HOW WE
ARE ABLE TO TRACK STILLBIRTH
RESEARCH.
AND ANOTHER THING THAT'S VERY
IMPORTANT TO THINK ABOUT IS THAT
STILLBIRTH -- WE'LL SEE,
STILLBIRTH IS VERY OFTEN STUDIED
IN CONJUNCTION WITH OTHER
PREGNANCY OUTCOMES, RELATED
CONDITIONS ORIS BEING FACTORS.
SO STILLBIRTH RESEARCH IS OFTEN
MINGLED WITH RESEARCH ON OTHER
TOPICS.
SO THERE'S ALSO A VERY BROAD
INTERNATIONAL INTEREST IN
STILLBIRTH.
THIS IS A WORLDWIDE ISSUE, AND
YOU'LL SEE THAT IN THE
LITERATURE THAT WE'RE ABOUT TO
SHARE WITH YOU.
SO WHAT WERE WE LACKING AT?
SO THESE WERE THE KEY QUESTIONS.
WE WERE TRYING TO JUST GIVE YOU
A BROAD UNDERSTANDING OF SOME OF
THE CHARACTERISTICS OF THE
OVERALL RESEARCH LITERATURE,
REGARDLESS OF WHETHER IT WAS
FUNDED BY NIH OR NOT.
THEN WE TOOK A LITTLE BIT CLOSER
LOOK AT HOW NIH FUNDING HAS
CONTRIBUTED TO THAT LITERATURE
AND THE CHARACTERISTICS OF NIH'S
GRANT PORTFOLIO ON THE TOPIC.
AND WE'LL GO INTO MORE OF THE
METHODOLOGY AS WE GET TO EACH
INDIVIDUAL SECTION.
BUT BROADLY SPEAKING, FOR
PUBLICATIONS, WE LOOKED AT DATA
FROM SCOPUS AND PUBMED SEARCHES
FOR ANSWER TO THAT FIRST
QUESTION, WHAT ARE
CHARACTERISTICS OF THE OVERALL
RESEARCH LITERATURE.
FOR NIH GRANTS, WE HAD TWO
DISTINCT APPROACHES.
SO FIRST WE LOOKED AT GRANTS
THAT WERE LINKED TO THE
STILLBIRTH PUBLICATIONS IN THOSE
LITERATURE SEARCHES FROM
QUESTION ONE.
SO THIS REALLY HELPED US LOOK AT
WHICH NIH GRANTS AND WHAT NIH
GRANTS HAVE CONTRIBUTED.
WE ALSO THEN LOOKED AT EACH
PORTFOLIO FROM OUR OWN INTERNAL
NIH SYSTEMS, AND THESE ARE DATA
WHERE WE'RE LOOKING AT THE
CONTENT OF NIH GRANTS ON
STILLBIRTH WITHOUT RESPECT TO
PUBLICATIONS.
AND THAT WAS THE DATA WE USED TO
ANSWER THAT THIRD QUESTION, THE
CHARACTERISTICS OF THE
PORTFOLIO.
FOR MOST RESEARCH TOPICS AT NIH
THAT WE LOOK AT, THESE TWO DATA
SOURCES ARE PRETTY TIGHTLY
ALIGNED.
THEY'RE NEVER GOING TO BE
IDENTICAL, BUT MOST OF THE TIME,
MOST OF THE PUBLICATIONS THAT
YOU SEE COME FROM GRANTS THAT
YOU COULD TE TELL AP A PRIORI RE
TO THAT SPECIFIC RESEARCH TOPIC.
FOR STILLBIRTH, HOWEVER, WE
DISCOVERED THAT WAS NOT THE
CASE.
I'M GOING TO WALK YOU THROUGH
THIS ODD LOOKING VENN DIAGRAM
HERE.
THE RECTANGLE TO THE LEFT SIDE
OF THE SCREEN THAT IS BLUE,
GREEN, WITH A LITTLE GREY, THAT
IS THE UNIVERSE OF GRANTS YOU
WHICH YOU CAN IDENTIFY FROM THE
TEXT OF THE GRANT AS BEING
RELATED TO STILLBIRTH.
THE LAYER THAT IS PARTLY GREEN
AND PARTLY YELLOW AND BLACK
STRIPED WITH A LITTLE SLIVER OF
GREY IS THE NIH GRANTS THAT
CONTRIBUTED TO THE LITERATURE,
AND SO THE YELLOW WITH THE BLACK
STRIPES ARE THOSE GRANTS THAT
WERE NOT IDENTIFIED AS
STILLBIRTH, BUT WOUND UP
PRODUCING STILLBIRTH
PUBLICATIONS.
SO YOU SEE ON THE RIGHT PART OF
THE SLIDE EXACTLY HALF OF THE
GRANTS THAT WOULD BE IDENTIFIED
AS STILLBIRTH FROM THE SPECIFIC
AIMS, THE ABSTRACT, THE PUBLIC
HEALTH RES REL VA VANS, RELEVANE
GRANTS DID NOT PRODUCE ANY
PUBLICATIONS RELATED TO
STILLBIRTH.
THAT LITTLE GREY PART HERE,
THESE ARE GRANTS THAT BASICALLY
JUST STARTED AND YOU COULDN'T
REASONABLY EXPECT THEM TO YET
PRODUCE PUBLICATIONS.
BUT PRETTY MUCH ABOUT HALF DID
NOT.
THE YELLOW SQUARE WITH THE
STRIPES, THESE ARE ALL OF THE
GRANTS THAT PRODUCED
PUBLICATIONS, BUT WERE NOT
IDENTIFIED AS STILLBIRTH
RESEARCH.
THE GREEN IS BOTH, AND THE
LITTLE SLIVER OF GREY AGAIN IS
GRANTS THAT WERE OUTSIDE OF THE
TIME SCOPE.
SO A PUBLICATION, FOR EXAMPLE,
MAY CREDIT A GRANT THAT WAS NOT
FUNDED IN THE SAME TIME PERIOD
AS THIS RECTANGLE.
SO WE'LL TALK A LITTLE BIT ABOUT
WHY THIS IS THE WAY THAT THE
LITERATURE LOOKS.
BUT I WANTED TO DO THIS RIGHT
OFF THE HAND SO YOU COULD SEE.
THE FIRST SECTION OF ANALYSES
THAT WE'RE GOING TO SHARE WITH
YOU, THOSE DEAL WITH THIS BOX
THAT'S HIGHLIGHTED, WHICH IS THE
GRANTS THAT CONTRIBUTED TO
PUBLICATIONS.
THEN WE'RE GOING TO SWITCH
GEARS, AND THE SECOND SET OF
ANAL SEALS DEALANALYSES -- THEN,
YOU'LL SEE WHY THESE DIFFERENT
BOXES DON'T HAVE QUITE THE
OVERLAP THAT IS TYPICAL FOR AN
NIH PORTFOLIO.
SO I'M JUST GOING TO PAUSE THERE
FOR A SECOND AND MAKE SURE THAT
MADE SENSE TO YOU AND SEE IF YOU
HAVE ANY QUESTIONS ABOUT THAT
BEFORE WE GET MOVING ALONG.
>>SARAH, THANK YOU.
THIS FRAMEWORK IS VERY HELPFUL.
>>OKAY.
WELL, THANK YOU.
I APPRECIATE THAT.
SO NOW WE'RE GOING TO MOVE TO
THAT YELLOW BOX AND LOOK AT THE
RESEARCH LITERATURE ON
STILLBIRTH.
GOOD, MY COMPUTER IS NOW
COOPERATING.
SO AS WE SAID BEFORE, WE REALLY
LOOKED AT LITERATURE FROM TWO
DATABASES FROM SCOPUS AND
PUBMED, WHICH LARGELY OVERLAP.
WE SEARCHED THESE DATABASES
USING STILLBIRTH TERMS AND
CONCEPTS INCLUDEDED IN THE
THESAURUS FROM NIH'S INTERNAL
SYSTEM THAT GENERATES OUR
RESEARCH REPORTS.
AND WE DID THAT SO THAT WE COULD
BE CONSISTENT WITH HOW WE
SEARCHED THE LITERATURE VERSUS
HOW WE SEARCHED GRANTS.
AND THEN WE LINKED PUBLICATIONS
TO THOSE NIH GRANTS.
WE CHOSE A FAIRLY WIDE RANGE OF
YEARS.
WE WENT FROM 2005 TO 2022, AND
AS YOU'LL SEE FURTHER ON, WE
USED -- SCOPUS HAS ITS OWN
THESAURUS THAT HAS INDEXED TERMS
AND WE USE ALGORITHMS FROM THOSE
INDEX TERMS TO HELP IDENTIFY
ARTICLES RO RELATED TO SOME
SUBTOPICS.
NOW THIS HAS SEVERAL
LIMITATIONS, AND YOU'LL SEE THE
IMPACT OF THOSE LIMITATIONS AT
VARIOUS POINTS IN THE FOLLOWING
SLIDES.
A KEY LIMITATION IS THAT WE DID
NOT HAVE THE TIME OR RESOURCES
TO MANUALLY VALIDATE AND SCREEN
THE ENTIRE GROUP, AND THE
AUTOMATION TOOLS ARE SUBJECT TO
ERROR.
NOT ONLY THAT, BUT INTER THERE E
SOME TOPICS THAT WE REALLY WOULD
HAVE LIKED TO HAVE BEEN ABLE TO
TAKE A DEEPER DIVE INTO THAT WE
JUST WERE NOT WELL SUITED TO
USING THE AUTOMATED TOOLS AT OUR
DISPOSAL.
SO THE N, THE SAMPLE SIZE FOR
THE SLIDES YOU'RE ABOUT TO SEE,
IS THIS 19,916 APPLICATIONS THAT
WAS -- WE SCOPED OUT A BUNCH OF
THINGS AND YOU CAN SEE ON THE
RIGHT-HAND SIDE THE THINGS THAT
WE SCOPED OUT.
TO TRY TO GET A GROUP OF
PUBLICATIONS THAT, AS BEST WE
COULD WITHOUT, AGAIN, VALIDATING
20,000 BY HAND, REPRESENTED THE
RESEARCH LITERATURE ON
STILLBIRTH.
SO WE ELIMINATED THINGS LIKE --
WE ELIMINATED ARTICLES THAT HAD
BEEN RETRACTED, WE ELIMINATED
PUBLICATIONS THAT WERE IN PURELY
VETERINARY JOURNALS, EDITORIALS,
A NUMBER OF THINGS.
SO AS YOU GO ALONG, THE N FOR
THE NEXT SET OF SLIDES IS THAT
19,916.
SO THE FIRST THING WE DID IS TO
LOOK AT THIS BY YEAR OVER TIME.
SO A FEW THINGS ABOUT THIS
SLIDE.
THE FIRST THAT YOU SEE HOW THIS
NUMBER HAS BEEN GOING UP VERY
SIGNIFICANTLY OVER TIME, AND IT
HAS BEEN A VERY STEADY RISE.
THERE WAS A LARGE INCREASE AT
PRETTY MUCH EVERY STAGE.
FOR THE FIRST 10 YEARS, IT
SLOWED DOWN A LITTLE BIT
AFTER -- FOR THE NEXT BUT NOT
VERY MUCH.
A VERY SUBSTANTIAL INCREASE.
THE OTHER THING TO NOTICE ON
THIS SLIDE IS THAT THE NIH
FUNDED PUBLICATIONS ARE A SMALL
SHARE, 7%.
IT'S HARD TO SCALE BECAUSE THE
SCALE IS SO DIFFERENT.
THE NIH PUBLICATIONS DID ALSO
INCREASE OVER TIME.
IN FACT, OVER THAT 10-YEAR TIME
PERIOD, BUT THEIR SHARE HAS
FALLEN A LITTLE BIT IN THE PAST
FIVE YEARS.
AND THE INCREASE HAS NOT BEEN AS
RAPID SINCE 2015.
SO WHERE ARE ARTICLES PUBLISHED
IS A QUESTION THAT WE ALWAYS
GET.
AND THIS PARTICULAR CHART SHOWS
YOU THAT THE TOP 25 MOST
FREQUENT JOURNALS, AND IT ALSO
SHOWS YOU THAT OUT OF THOSE 25
MOST FREQUENT JOURNALS, ONE OF
THEM ARE ON STE FRICTION TRICKS
AND GYNECOLOGY AND
MATERNAL-FETAL MEDICINE-FOCUSED,
THERE WERE ONLY FOUR THAT WERE
NOT, THAT WERE GENERAL ARTICLES
OR IN SOME OTHER AREA.
SO I SAID, WE TOOK THE INDEXING
THAT SCOPUS PROVIDED AND CREATED
ALGORITHMS TO IDENTIFY
LITERATURE AND WE LOOKED AT
SUBTOPICS THAT WERE TYPICALLY
RELATED TO EITHER RISK FACTORS
OR TO OBSTETRIC COMPLICATIONS,
AND THESE SOP TOP ARE THE SUBTOD
HOW THEY CAME OUT.
YOU'LL SEE THAT, UNSURPRISING TO
YOU, I'M SURE, INFECTIOUS
DISEASES WAS THE MOST FREQUENT
RISK FACTOR THAT PEOPLE LOOKED
AT IN STILLBIRTH RESEARCH.
AND THEN THERE WERE A LARGE
NUMBER OF ARTICLES ON PREGNANCY
CONDITIONS AND PREGNANCY
COMPLICATIONS LIKE PREECLAMPSIA,
ET CETERA, ET CETERA.
NOTICE THERE ARE VERY FEW ON
GRIEF AFTER STILLBIRTH, AND
THERE ARE QUITE A BIT ON
SUBSTANCE USE BUT IT IS NOT AS
HIGH AS SOME OF THE OTHER BARS,
AND I'LL TELL NE TELL YOU IN A E
WHY I'M POINTING IT OUT.
SO TO SEE IF THIS PATTERN HELD
FOR THE MOST HIGHLY CITED
PUBLICATIONS, WE TOOK A LOOK AT
THAT AND THAT WAS PRETTY MUCH
THE CASE.
THAT INFECTIOUS DISEASES AND THE
PREGNANCY COMPLICATIONS WERE
ALSO MOST WELL REPRESENTED IN
THAT GROUP.
WHEN WE DECIDED TO LOOK AT NIH
AND NICHD-SUPPORTED
PUBLICATIONS, SO EARLIER AS I
TOLD YOU BEFORE, THE PERCENTAGE
IS FAIRLY LOW BUT WHEN YOU LOOK
AT IT BY SUBTOPIC, THERE'S A
PARTICULAR PATTERN.
SO THIS BROWN LINE HERE IN THE
MIDDLE OF THE SCREEN IS THE 7.2%
THAT'S NIH'S OVERALL SHARE OF
FUNDING.
SO IF THE TOTAL BAF IS ABOVE
BAR IS ABOVETHAT LINE, IT MEANSS
FUNDING MORE THAN ITS TYPICAL
SHARE OF AVERAGE ON ARTICLES FOR
THAT PARTICULAR SUBTOPIC.
AND SIMILARLY IF IT'S BELOW THE
LINE, THERE ARE FEWER.
AND THE BLACK LINE BELOW IT
REPRESENTS NICHD FUNDING, SO IT
IS IN A SIMILAR WAY.
AND YOU SEE HERE THAT PROBABLY
UNSURPRISINGLY -- PREGNANCY
COMPLICATION GROUPS ARE MORE
LIKELY TO BE SUPPORTED BY NIH,
BUT YOU ALSO SEE MATERNAL
SUBSTANCE USE BEING SOMETHING
THAT IS VERY -- IS MORE COMMONLY
SUPPORTED BY NIH THAN YOU WOULD
EXPECT BASED ON THE OVERALL
AVERAGE.
THEN WE DID THE SAME THING
LOOKING AT THOSE TOP CITED
PUBLICATIONS, AND A COUPLE OF
THINGS TO NOTE ABOUT THIS IS
THAT THE NUMBERS ARE VERY MUCH
HIGHER.
SO NIH HAS A LOW SHARE OF THE
TOTAL PUBLICATIONS BUT A MUCH
HIGHER SHARE, A DRAMATICALLY
HIGHER SHARE OF THOSE
PUBLICATIONS THAT ARE MOST
FREQUENTLY CITED.
THE PATTERN IS FAIRLY SIMILAR.
IF A LITTLE BIT LESS STRONG.
AND NOTICE THAT SUBSTANCE USE
NOW DROPS BELOW THAT LINE.
WHICH IS A LITTLE BIT DIFFERENT
THAN THE SLIDE -- SO THAT'S KIND
OF THE OVERALL AGGREGATE DATA
BUT JUST TO GIVE YOU A LITTLE
BIT OF A FEEL FOR WHAT THIS
LITERATURE LOOKS LIKE, WE PUT UP
SOME EXAMPLES HERE AND I'M NOT
GOING TO READ THEM TO YOU
BECAUSE YOU CAN READ SLIDES.
BUT I'LL TELL YOU A LITTLE BIT
ABOUT SOME OF THE INTERESTING
THINGS THAT YOU SEE WHEN YOU
JUST EYEBALL IT.
SO FIRST, THERE ARE FUNDERS ALL
OVER THE WORLD THAT HAVE AN
EXTENSIVE INTEREST IN
STILLBIRTH.
AND FOR INSTANCE THERE'S A LARGE
SLAIR OF PUBLICATIONS COMING OUT
OF THE U.K., AND NOT JUST OUT OF
THE U.K. BUT OUT OF A RANGE OF
DIFFERENT GROUPS AND AGENCIES
WITHIN THE U.K.
THE OTHER THING TO NOTICE IS --
THAT WE NOTICED IS THE WIDE
RANGE OF RISK FACTORS, ALL THE
HECK OVER THE PLACE, AND MANY,
MANY, MANY DIFFERENT TYPES OF
RISK FACTORS AND ASSOCIATIONS.
THE OTHER THING THAT WAS
INTERESTING AND USEFUL TO NOTE
IS THAT ESPECIALLY IN THE
LITERATURE ON PREGNANCY
COMPLICATIONS, THERE WAS A
SIGNIFICANT AMOUNT OF
PRE-CLINICAL WORK IN MICE AND IN
OTHER ANIMAL MODELS, IN
NON-HUMAN PRIMATES.
THERE WAS QUITE A BIT OF THAT.
AGAIN, THIS IS WHERE WE SHIFT
GEARS, AND SO NOW WHEN WE TALK
ABOUT GRANTS, WE'RE TALKING --
BY THE GRANT APPLICATION -- AND
WHEN WE THOUGHT ABOUT HOW WE
WERE GOING TO THINK ABOUT
STILLBIRTH FUNDING IN
CHARACTERIZING GRANTS, WE CAME
UP WITH THIS TIERED CONCEPT THAT
OUR TEAM USED TO TRY AND MAKE
THINGS CLEARER TO US, AND SO WE
DIVIDED STILLBIRTH RESEARCH INTO
THESE DIFFERENT TIERS, SO THE
SMALLEST GROUP, THAT DARK CIRCLE
IN THE MIDDLE OF THIS DIAGRAM,
ARE THOSE RESEARCH STUDIES WHERE
STILLBIRTH IS THE PRIMARY FOCUS,
REALLY INTENSELY FOCUSED ON
STILLBIRTH, AND THAT'S THE
INTENT OF THE STUDY.
THERE'S A LARGER GROUP IN THAT
SORT OF MIDDLE BLUE WHERE
STILLBIRTH IS BEING STUDIED IN
CONJUNCTION WITH OTHER OUTCOMES.
SO IT'S ONE OF THE OUTCOME
MEASURES.
IT'S NOT THE SOLE MEASURE, IT
MAY NOT EVEN BE THE PRIMARY
MEASURE, BUT IT IS BEING
MEASURED SEPARATELY, IT IS BEING
FOCUSED ON, IT'S JUST THAT THE
STUDY IS LOOKING AT A WIDE
RANGE.
SO THERE'S A LOT OF STUDIES IN
THIS GROUP THAT ARE LOOKING AT A
RANGE OF WHAT IS WHAT THEY CALL
ADVERSE OUTCOMES, SO THEY'RE
LOOKING AT STILLBIRTH AND
PREECLAMPSIA, STILLBIRTH AND
PLACENTAL ISSUES.
THEY'RE LOOKING AT STILLBIRTH
AND LOW BIRTH WEIGHT.
SO THERE'S A RANGE OF THINGS.
BUT THEY STILL ARE LOOKING AT
STILLBIRTH AS ITS OWN OUTCOME.
THE FINAL TIER, THAT OUTER
CIRCLE, IS WHAT WE FOR LACK OF A
BETTER TERM CALLED
STILLBIRTH-ADJACENT.
THESE ARE THINGS WHERE THE
RESEARCH CLEARLY HAS
IMPLICATIONS FOR STILLBIRTH.
BUT THEY'RE NOT MEASURING
STILLBIRTH AS A SEPARATE
OUTCOME.
IT MIGHT BE A COMPOSITE OUTCOME,
IT MIGHT BE SOMETHING WHERE
THERE'S IMPLICATIONS FOR
STILLBIRTH, IT MIGHT BE PART OF
THE MOTIVATION FOR DOING THE
RESEARCH, BUT IT'S NOT FOCUSED
ON STILLBIRTH AS AN -- AS A
DISTINCT OUTCOME.
AND SO IT'S A VERY HARD CIRCLE
TO TRY AND GET OUR ARMS AROUND
FOR US, BECAUSE IF THE TEXT --
SOMETHING MAY BE VERY IMPORTANT
FOR STILLBIRTH RESEARCH BUT IF
THE TEXT DOESN'T SAY IT, IT MAY
BE HARD TO -- SO THERE MAY BE
SOME RELEVANT STUDIES THAT DON'T
DIRECTLY MENTION IT, THAT YOU
MISS ALL TOGETHER.
SO THAT CIRCLE IS VERY HARD TO
KIND OF GRASP INITY ENTIRETY.
SO HOW DID WE DEAL WITH THIS?
NIH'S OFFICIAL CATEGORICAL
REPORT, STILLBIRTH IS INCLUDED
WITHIN THE PREGNANCY CATEGORY.
AND SO WE USED NATURAL LANGUAGE
PROCESSING TOOLS COMBINED WITH
MANUAL CODING, AND I'LL EXPLAIN
WHY, TO IDENTIFY THOSE GRANTS IN
TIER 1 AND TIER 2.
AND SO WE HAVE -- LUCKILY FOR
US, WE HAVE WITHIN NICHD A VERY
DETAILED CODING SYSTEM WHERE WE
COULD PULL OUT GRANTS RELATED TO
STILLBIRTH, BUT WE DON'T HAVE
THAT FOR ALL OF NIH.
SO WE USE THIS NATURAL LANGUAGE
PROCESSING TOOLS TO COME UP WITH
A SET OF GRANTS RELATED TO
STILLBIRTH, AND THEN WE COMPARED
THAT BACK TO OUR GOLD STANDARD
FOR THE NICHD GRANTS.
AND WHAT WE FOUND WAS THAT IN
ORDER TO GET THE PROCESS -- IN
ORDER TO GET THE AUTOMATED TOOL
TO PULL IN EVERYTHING THAT YOU
KNOW IS STILLBIRTH, YOU WIND UP
WITH A SET WITH A LOT OF FALSE
POSITIVES IN IT.
SO WE TOOK THAT SET AND USED
MANUAL CODING TO ELIMINATE THE
FALSE POSITIVES, TO VALIDATE THE
GRANTS AND DETERMINE WHAT TIER A
GRANT WAS.
AND SO I DO NEED TO POINT OUT
THESE DATA ARE UNOFFICIAL.
THEY DID NOT GO THROUGH THE
NIH-WIDE PROCESS THAT'S USED FOR
PUBLIC REPORTING FOR SCIENTIFIC
TOPICS, AND THEY WEREN'T
VALIDATED BY ALL THE OTHER ICs
THAT HAVE GRANTS INCLUDED IN
THIS SET.
SO THIS IS AN UNOFFICIAL
ANALYSIS IN THAT WAY.
ONCE WE DID THAT, WE LOOKED
WITHIN THE NIH-PROPERTIED
CATEGORY TO SEE WHAT WE COULD DO
TO IDENTIFY A SUBSET OF TIER 3.
AND WE COUNTED EACH PROJECT ONCE
FOR THE TOTAL SET AND FOR TRENDS
IN EVERY YEAR IN WHICH IT HAD
FUNDING.
WE ALSO EXCLUDED INSTITUTIONAL
TRAINING GRANTS.
WE INCLUDED INDIVIDUAL GRANTS SO
INDIVIDUAL Ks, K08s, K23s
ARE IN, BUT BROADLY CONSTRUCTED
T32 PROGRAMS, WE DID NOT
INCLUDE.
SO ONCE WE DID ALL THAT, THIS IS
WHERE WE ENDED UP, AND A COUPLE
OF KEY POINTS WITH THE SETS THAT
WE WOUND UP WITH.
THE FIRST THING THAT WE NOTICED
WAS THAT THE SET WAS
OVERWHELMINGLY TIER 2 PROJECTS.
SO STILLBIRTHS IN NIH'S
PORTFOLIO IS MOST OFTEN STUDIED
IN CONJUNCTION WITH OTHER
PREGNANCY OUTCOMES RATHER THAN
BY ITSELF.
ABOUT TWO THIRDS -- ABOUT THREE
QUARTERS OF THE GRANTS THAT WERE
IN THAT SET WERE FUNDED BY
NICHD, AND JUST FOR CONTEXT,
THAT'S A VERY HIGH NUMBER FOR AN
NIH-REPORTED TOPIC.
SO IT REALLY IS VERY
NICHD-CENTRIC WHEN WE GOT RID OF
THE FALSE POSITIVES.
AS WE SAID BEFORE ABOUT HALF OF
THOSE GRANTS RESULTED IN
STILLBIRTH PUBLICATIONS.
ABOUT A THIRD OF TIER
1 PUBLICATIONS, HOWEVER, DID
NOT.
SO THAT WAS ALSO INTERESTING.
THERE WAS A DIFFERENCE BETWEEN
THE TWO, BUT IT WAS NOT AS LARGE
AS MIGHT BE EXPECTED AT THE
BEGINNING.
AND THEN THE OTHER PIECE TO NOTE
WAS THAT THE CENTERS AND
NETWORKS PLAYED A MAJOR ROLE IN
THE ENTIRE SET.
THERE WAS A LOT OF PROJECTS THAT
WERE FROM CENTERS, NETWORKS,
LARGE COHORT STUDIES.
SO IN THE INTRODUCTION,
DR. BIANCHI MENTIONED THE
STILLBIRTH NETWORK.
THERE HAVE BEEN, IN THE TIME
PERIOD THAT WE STUDIED, TWO
MAJOR TIER 1 MEANING FOCUSED
EXCLUSIVELY OR NEARLY
EXCLUSIVELY ON STILLBIRTH CENTER
AND NETWORK PROGRAMS.
SO THERE WAS THE STILLBIRTH
COLLABORATIVE RESEARCH NETWORK
AND THE PRENATAL ALCOHOL SIDS
AND STILLBIRTH NETWORK.
AND THE INTERESTING THING ABOUT
THIS RESEARCH NETWORK WAS,
AGAIN, THAT I WAS VERY SURPRISED
WHEN I FOUND THAT BETWEEN A
THIRD AND 40% OF THE
PUBLICATIONS FROM THAT NETWORK
CAME MORE THAN 10 YEARS AFTER IT
WAS FUNDED.
SO ALTHOUGH THIS NETWORK ENDED
FUNDING OVER A DECADE AGO, OVER
A THIRD OF THE PUBLICATIONS FROM
THAT NETWORK HAVE COME OUT ONLY
IN THE LAST THREE YEARS.
SO THIS WAS REALLY A TESTAMENT
TO THE IMPORTANCE OF KEEPING
DATA AND SHARING DATA AND HAVING
IT AVAILABLE FOR ADDITIONAL WORK
IN, IN SOME CASE, MANY YEARS
LATER.
THE RESULTS OF THE STILLBIRTH
NETWORK FOCUSED PRIMARILY ON
CAUSES OF STILLBIRTH, AND IT WAS
ABLE TOLL CONFIRM A LOT OF WHAT
FOLKS HAD THOUGHT ABOUT
STILLBIRTH BUT HAD NOT REALLY
HAD THE EVIDENCE FOR.
THE NETWORK ALSO CAME OUT WITH A
IMPORTANT AND VERY HIGHLY CITED
PUBLICATION ABOUT CLASSIFICATION
FOR CAUSES OF STILLBIRTH.
THE PAST NETWORK WAS FOCUSED
PRIMARILY ON ALCOHOL USE, AND IT
HAD -- PRIMARY OUTCOMES, ONE
SIDS AND ONE ON STILLBIRTH.
AND AGAIN, THESE ARE JUST A
SMALL -- OF SOME OF THE FINDINGS
FROM THE NETWORKS TO NOTE FROM
THE STILLBIRTH RESEARCH NETWORK,
THE INCREASING EMPHASIS ON
GENETIC CAUSES, AND HOW TO
IDENTIFY NEW GENETIC CAUSES,
FROM THE PASS NETWORK, ONE OF
THE THINGS THE PASS NETWORK DID
WAS, THE RESULTS DEFINITELY
CONFIRMED THE ROLE OF SUBSTANCE
USE IN STILLBIRTH.
BUT IT ALSO, WHEN YOU LOOKED AT
SOME OF THE DESCRIPTIVE
FINDINGS, SOME OF THE
DESCRIPTIVE FINDINGS WERE REALLY
INTERESTING ABOUT THE PATTERNS
OF USE IN SUBSTANCE USE AMONGST
PREGNANT WOMEN.
THEN NICHD ALSO, SINCE THOSE TWO
NETWORKS, MANY OF THE STILLBIRTH
PUBLICATIONS AND STILLBIRTH
STUDIES HAVE BEEN FUNDED UNDER
BROADER RESEARCH NETWORKS LIKE
THE GLOBAL NETWORK.
THERE'S MORE EXAMPLES OF THAT.
THE NOLIPEROUS STUDY CALLED NEW
MOM TO BE HAS ALSO YIELDED SOME
NEW PUBLICATIONS ON STILLBIRTH.
THESE TWO NETWORKS AND IN
PARTICULAR THE GLOBAL NETWORK
HAVE HAD SEVERAL STUDIES THAT
HAVE FOCUSED ON STILLBIRTH OR
INCLUDED IT AS A MEASURE.
SO WHAT DO THE OTHER ICs DO,
WHAT'S IN THAT OTHER 24%?
THERE'S A SIGNIFICANT PORTFOLIO
IN NIEHS LOOKING AT
ENVIRONMENTAL FACTORS.
THE VAST MAJORITY OF THIS IS
GRANTS THAT LOOK AT A RANGE OF
OUT COME, NOT ENTIRELY
STILLBIRTH, BUT THERE ARE A
LARGE NUMBER OF THESE, THEY DO
MEASURE STILLBIRTH SEPARATELY
AND THEY DO ACCOUNT FOR IT.
IT'S NOT -- COMPOSITE.
COMPLICATED GRIEF IS STUDIED
LARGELY IN NIMH.
THERE ARE SEVERAL PROJECTS ON
THAT WITHIN THE NATIONAL
INSTITUTE OF MENTAL HEALTH, AND
THERE'S ALSO THIS INTERESTING
PROGRAM FROM COMPLEMENTARY
MEDICINE AND INTEGRATIVE HEALTH
ABOUT STILL LOOKING AT
COMPLICATIONED GRIEF, PTSD --
THAT'S FUNDED BY THE NATIONAL
INSTITUTE ON DRUG ABUSE.
OTHER INSTITUTES INCLUDING
ARTHRITIS MUSCULOSKELETAL,
HEART, LUNG AND BLOOD,
NEUROLOGY, THERE'S A NUMBER OF
PROJECTS THAT LOOK AT THE IMPACT
OF CHRONIC CONDITIONS THAT WOMEN
MAY HAVE BEFORE THEY BECOME
PREGNANT OR DURING PREGNANCY AND
HOW THAT AFFECTS THE RISK FOR
STILLBIRTH.
THERE'S A SIGNIFICANT NUMBER OF
THOSE.
THEY'RE SCATTERED ACROSS
DIFFERENT INSTITUTES, DEPENDING
ON EACH INSTITUTE'S SCIENTIFIC
FOCUS.
SO AS I SAID, WE FOUND IT HARD
TO GET OUR ARMS AROUND THIS
WHOLE IDEA OF THAT THIRD TIER OF
PROJECTS, SO WE LOOKED FOR SOME
EXAMPLES WITHIN THE PREGNANCY
CATEGORY, AND WE LOOKED AT
PROJECTS RELATED TO RISK FACTORS
FOR STILLBIRTH WITHIN THE
PREGNANCY CATEGORY.
AND TO GIVE YOU AN IDEA OF SOME
OF THESE PROJECT, WHICH AGAIN
ARE NOT FOCUSED DIRECTLY ON
STILLBIRTH, BUT YOU SEE THAT
THEY GROW OVER TIME.
AND YOU CAN SEE THE INCREASE IN
SUBSTANCE ABUSE LARGELY COMING
FROM OPIOID, RESEARCH ON OPIOID
ADDICTION/MISUSE AND ALSO
INFECTIOUS -- AND PRETERM
GROWTH.
SO THIS IS A SMALL PART OF WHAT
THAT TIER 3 CONSISTS OF, BUT
WHEN YOU ADD ALL THAT UP, EVEN
IN THOSE FOUR SUBCATEGORIES, YOU
CAN SEE HOW TIER 3 JUST TOTALLY
DWARFS TIER 1 AND TIER 2 IN
TERMS OF SIZE.
AND THAT EXPLAINS WHY THAT
YELLOW AND BLACK STRIPED BOX IS
SO BIG.
BECAUSE A LOT OF THESE GRANTS,
THEY DON'T START OUT FOCUSING ON
STILLBIRTH BUT THEY DO
CONTRIBUTE FINDINGS SPECIFICALLY
ON STILLBIRTH TO THE LITERATURE.
AND WHAT'S INTERESTING IS THAT
THAT SET OF GRANTS HAS REALLY
TAKEN OFF AND GROWN
SUBSTANTIALLY OVER TIME, WHEREAS
THE MORE FOCUSED GRANTS HAVE
REMAINED PRETTY STEADY.
SO ARE THESE PUBLICATIONS FROM
TIER 3 JUST THINGS THAT REALLY
AREN'T MAJOR CONTRIBUTORS, ARE
THEY JUST INCIDENTAL?
WELL, NO.
IF YOU LOOK AT THE TOP 300 CITED
PUBLICATIONS, A LOT OF THEM COME
FROM TIER 3 PROJECTS, AND SO
HERE ARE JUST A FEW EXAMPLES.
BUT YOU CAN SEE SOME OF THEM
DEAL WITH ENVIRONMENTAL
EXPOSURE, SOME OF THEM --
CONDITIONS, AND THERE'S A VERY
WIDE RANGE OF THINGS.
A GOOD EXAMPLE, I THINK THE LAST
ONE ON THIS SLIDE, WHICH IS
THERE'S A LARGE COHORT STUDY
THAT'S FUNDED LOOKING AT YOUNG
PEOPLE WHO ACQUIRE TYPE
2 DIABETES AT EARLY AGES.
THEY LOOKED AT STILLBIRTH RISK
IN THAT SUBPOPULATION, SO THAT
WAS A REALLY INTERESTING THING
WHERE YOU WOULDN'T NECESSARILY
HAVE ANTICIPATED THAT THAT WOULD
BE A SO-CALLED STILLBIRTH GRANT.
SO JUST TO SUMMARIZE HERE, THE
TOTAL PUBLICATIONS, REGARDLESS
OF FUNDING SOURCE, HAVE BEEN
GROWING QUITE A BIT, AND IT DOES
VARY BY SUBGROUP WITH THE
LARGEST SHARE BEING ON
INFECTIOUS DISEASES AS RISK
FACTORS.
THE NIH SHARE OF THE LITERATURE
IS SMALL BUT HIGHER WHEN YOU
LOOK AT HIGHLY CITED
PUBLICATIONS, AND OBSTETRICAL
CONDITIONS.
MOST OF THE LITERATURE SUPPORTED
BY NIH IS LINKED TO PROJECTS
THAT DO NOT -- YOU WOULD NOT
INITIALLY PICK OUT AS HAVING A
STILLBIRTH FOCUS.
THAT SET OF GRANTS THAT DOES NOT
NECESSARILY HAVE A STILLBIRTH
FOCUS HAS GROWN SUBSTANTIALLY
OVER TIME.
SO ITS SHARE HAS GROWN OVER
TIME.
THE OTHER THING TO REALLY NOTE
IS THAT MOST OF THESE STILLBIRTH
PROJECTS FOCUS ON A RANGE OF
PREGNANCY OUTCOMES RATHER THAN
EXCLUSIVELY STILLBIRTH.
SO WITH THAT, I'M JUST GOING TO
STOP AND SAY THANK YOU, AND I
REALLY NEED TO ACKNOWLEDGE THE
TEAM THAT PUT THIS DATA
TOGETHER.
I GET THE PLEASURE OF TELLING
YOU ABOUT IT, BUT THERE WERE A
LOT OF -- THERE'S A LOT OF
EFFORT THAT WENT THROUGH THIS
ANALYSIS.
SO WE APPRECIATE YOUR ATTENTION,
AND IF YOU HAVE QUESTIONS OR
COMMENTS, WE'D REALLY LIKE TO
LOOK AT THEM.
I'M GOING TO PULL UP THE CHAT
AND MAYBE MONICA CAN HELP ME
LOOK AT SOME OF THESE COMMENTS.
>>THERE'S A LONG CHAT, SARAH,
SO YOUR DATA INSPIRED A LOT OF
COMMENTS.
>>GOOD!
>>LET ME -- G DR. GLAVIN, BEFOE
WE GET TO QUESTIONS IN THE CHAT
BOX OR QUESTIONS FOR YOU, I JUST
WANTED TO ACKNOWLEDGE INPUT FROM
PARENTS AND PARENT GROUPS IN THE
CHAT BOX.
TO SAY IN MY LONG ASSOCIATION
WITH THE NICHD, INPUT FROM
PARENTS AND FAMILIES HAS ALWAYS
BEEN GIVEN VERY HIGH IMPORTANCE,
AND I CONTINUE TO SEE THAT AS
NOW A MEMBER OF THE NICHD
ADVISORY COUNCIL, WHERE
DR. BIANCHI ALWAYS INVITES
PARENTS AND FAMILIES TO SPEAK TO
THE ADVISORY COUNCIL.
SO WE WILL EXPLORE ANY AND ALL
OPPORTUNITIES FOR INCORPORATING
INPUT FROM PARENTS, AND I WILL
CONSULT WITH DR. BIANCHI AND THE
NICHD ON HOW BEST TO DO THAT.
SO I JUST WANTED TO MAKE SURE
THAT PARENTS ATTENDING THIS
MEETING KNOW THAT THEIR INPUT
HAS BEEN ACKNOWLEDGED.
ADD THEN MONICA, WOULD YOU LIKE
TO HANDLE THE QUESTIONS OR WOULD
YOU LIKE ME TO READ THEM OUT FOR
DR. GLAVIN?
>>I MEAN, I WOULD BE HAPPY TO
DO IT TOGETHER.
I PUT DOWN SOME OF THEM THAT
I'VE ALREADY SEEN IN THE CHAT.
I KNOW THERE WAS SOME INTEREST
IN UNIN UNDERSTANDING MORE ABOUT
THE -- TRYING TO UNDERSTAND MORE
ABOUT WHAT WAS YOUR TIER 1, HOW
MANY STUDIES WERE FOCUSING ON
STILLBIRTH PREVENTION VERSUS
SUPPORT, LIKE IN GRIEF AFTER
PREGNANCY, I'M NOT SURE I KNOW
HOW DIFFICULT IT IS TO LOOK AT
THIS, HAVING A STILLBIRTH, NOT
THE OUTCOME OR MORE INCLUDED IN
ADVERSE PREGNANCY INCOMES SO I
KNOW IT'S NOT EASY TO ADDRESS IT
BUT MAYBE YOU COULD DO
SOMETHING, TIER 1, TIER 2 AND
TIER 3.
THANK YOU.
>>GRIEF AND TREATMENT AFTER
STILLBIRTH IS ALMOST CERTAINLY
GOING TO WIND UP IN TIER 1.
BECAUSE THAT'S REALLY
STILLBIRTH-FOCUSED.
THERE WAS NOT AS MUCH OF -- AS
MANY OF THOSE PROJECTS AS WE
MIGHT LIKE.
MOST OF WHAT THERE WAS THERE WAS
FUNDED BY THE NATIONAL INSTITUTE
ON MENTAL HEALTH, BUT THAT'S
SOMETHING WE REALLY MIGHT WANT
TO CONSIDER LOOKING INTO MORE
DEEPLY, IS THAT PARTICULAR AREA.
THERE WAS NOT A LOT OF PUBLISHED
LITERATURE ON THAT EITHER
COMPARED TO OTHER TOPICS, AND
THAT'S -- SO THAT WAS SAYING
WHEN WE LOOKED, THAT SEEMED TO
BE SOMEWHAT OF A GAP THAT WE
OUGHT TO THINK ABOUT.
>>I BELIEVE ANOTHER QUESTION
WAS ABOUT IF YOU HAD A CHANCE TO
DIVIDE THEM BETWEEN -- IN THE
LITERATURE BETWEEN THE RESEARCH
OF PREVENTABLE AND NOT
PREVENTABLE?
>>NO, WE REALLY DIDN'T.
AND THAT WOULD BE REALLY HARD.
WE'D HAVE TO COME UP WITH A GOOD
WAY OF CLASSIFYING WHAT IS
PREVENTABLE AND WHAT ISN'T.
YOU CAN GET A HINT OF IF YOU
LOOK AT THE DIFFERENCE BETWEEN
SOME OF THE PREGNANCY
COMPLICATIONS AND INFECTIOUS
DISEASES AND GENETICS.
YOU CAN KIND OF GET A HINT AT
IT.
BUT WE WEREN'T REALLY ABLE TO
BREAK THAT DOWN QUITE AS MUCH AS
WE WOULD LIKE.
>>SARAH, THERE IS ALSO A
QUESTION FROM DR. BARFIELD
AROUND SOCIAL DETERMINANT OF
HEALTH, AND PARTICULARLY STRESS
DURING PREGNANCY AS A CAUSE OF
STILLBIRTH.
COULD YOU COMMENT ON WHETHER OR
NOT YOU MIGHT BE ABLE TO DIG A
LITTLE DEEPER INTO THAT?
>>YEAH.
THAT WAS ONE OF THOSE TOPICS
THAT WE REALLY WOULD HAVE LIKED
TO HAVE DIVED INTO MORE, AND IT
DID NOT PICK UP WELL WITH THE
AUTOMATED SYSTEM, SO DOWN TO
THAT MORE WOULD REQUIRE MORE
HAND CODING AND IDENTIFICATION
THAT WE JUST SIMPLY DID NOT HAVE
THE TIME TO DO.
I KNOW IT'S THERE.
I KNOW IT'S SOMETHING THAT
PEOPLE ARE REALLY LOOKING AT.
WE SAW IT WHEN WE EYEBALLED IT.
TO TRY AND QUANTIFY IT, WE DID
NOT GET THAT FAR.
BUT WE KNOW THAT'S AN IMPORTANT
TOPIC.
AND IT'S DISCUSSED FAIRLY
FREQUENTLY IN COMBINATION WITH
HEALTH DISPARITIES, BUT IT WAS
NOT ENTIRELY A HEALTH
DISPARITIES ICIAL EU, AND SO
THAT WOULD BE SOMETHING WE WOULD
HAVE TO TRY AND LOOK AT THOSE
TWO THINGS SEPARATELY.
AND LAST BUT NOT LEAST, ONE OF
THE STUDIES OUT OF THE GLOBAL
NETWORK LOOKED AT SOCIOECONOMIC
STATUS WITHIN LOW AND MIDDLE
INCOME COUNTRIES AND FOUND A
STRONG ASSOCIATION THERE.
I KNOW THAT'S AN IMPORTANT THING
TO LOOK AT.
>>ONE MORE QUESTION.
I'M TRYING TO GO THROUGH THE
CHAT, AND THANK YOU, DR. JAIN,
AND DR. REDDY, AND EVERYONE
ELSE.
I KNOW THERE IS SOMEONE WITH A
RAISED HAND.
LET ME LOOK AT THIS QUESTION.
WHICH OTHER INSTITUTE BESIDES
NICHD HAVE BEEN LEADING FUNDERS
FOR GRANT THAT YOU HAVE SHOWN
REGARDING THE TOPIC?
ARE YOU ABLE TO KNOW THAT?
PROBABLY NOT AT THIS TIME MAYBE?
>>SO THE EXAMPLES THAT WERE IN
THE SLIDES REALLY DO ILLUSTRATE
THAT.
THE NIEHS HAS A VERY -- HAS A
VERY SIGNIFICANT NUMBER.
THE OTHERS ARE MORE SCATTERED.
YOU HAVE A FEW GRANTS FROM A LOT
OF DIFFERENT INSTITUTES MAKING
UP THAT 24% WITH REALLY THE
EXCEPTION OF NIEHS.
WE CAN RUN THAT FAIRLY EASILY,
SO I'LL TRY AND PUT THAT
TOGETHER.
>>DR. EMILY PRICE, NOT SURE IF
SHE WANTS TO ASK A QUESTION,
SHE'S HAD HER HAND RAISED FOR
SOME TIME.
>>I'M WITH A NON-PROFIT
ORGANIZATION CALLED HEALTHY
BIRTHDAY INGE T INC THAT CREATEE
PUBLIC HEALTH CAMPAIGN.
I WANT TO THANK YOU FOR YOUR
TIME TODAY AND THE WORK YOU'RE
PUTTING INTO THIS.
AND I RESPECTFULLY WANTED TO
ASK, WHAT IS THE DEFINITION THAT
IS BEING USED FOR "RARE"?
WHEN I LOOK AT THE DEFINITION OF
RARE, IT SAYS AN EVENT,
SITUATION OR CONDITION THAT IS
NOT OCCURRING VERY OFTEN.
IT'S SPARSE, IT'S SCARCE.
AND I THINK STILLBIRTH
PREVENTION ORGANIZATIONS WOULD
RESPECTFULLY DISAGREE THAT
STILLBIRTH IS RARE, THAT 65
BABIES DYING OF STILLBIRTH EVERY
DAY DOESN'T FEEL RARE TO US, AND
SO I'M TRULY CURIOUS HOW YOU
DEFINE THE WORD "RARE."
>>SO WHEN I PUT THE SLIDES
TOGETHER I WAS TRYING TO BE
SENSITIVE TO THAT BECAUSE
OBVIOUSLY ONE STILLBIRTH IS TOO
MANY.
SO IT IS RARE ONLY IN THE SENSE
THAT DR. BIANCHI TALKED ABOUT IN
HER INTRODUCTORY REMARKS WHERE
FROM A STATISTICAL POINT OF
VIEW, WHAT IT MEANS IS THAT IF
YOU'RE DOING RESEARCH IN
STILLBIRTH, YOU HAVE TO BE
CAREFUL TO HAVE A LARGE ENOUGH
GROUP OF PARTICIPANTS THAT YOU
CAN REALLY SAY SOMETHING
STATISTICALLY.
SO IT IS NOT RARE -- UNIMPORTANT
BY ANY STRETCH OF THE
IMAGINATION AND I DON'T THINK
ANY OF US BELIEVE THAT.
WHAT WE WANTED TO MAKE THE
POINT, THOUGH, IS THAT FROM A
RESEARCH POINT OF VIEW, WE NEED
TO BE SURE THAT WHEN WE DO
RESEARCH ON THIS TOPIC, THAT WE
DO IT ON A LARGE ENOUGH SCALE
THAT WE CAN COME UP WITH RESULTS
THAT WILL BE USEFUL FOR
PREVENTION.
AND THAT'S THE REASON FOR
CONSIDERING THAT CONCEPT.
DOES THAT MAKE ACCEPTS?
MAKE SENSE?
>>SARAH, THANK YOU FOR
EXPLAINING THAT.
IT ACTUALLY IS A VERY IMPORTANT
POINT, BECAUSE WHEN YOU'RE
TALKING ABOUT AN INCIDENCE OF
LESS THAN 1%, IN THE SCIENTIFIC
APPROACH, IT MAY BE A SMALL
NUMBER, BUT FOR THE FAMILY
IMPACTED, THAT ONE IS A VERY BIG
NUMBER.
SO ONE MORE QUESTION FROM THE
PARENT GROUP, SARAH.
AND THAT STILLBIRTH AND
PREGNANCY OFTEN OCCURS WITH NO
KNOWN RISK FACTORS.
>>YES.
>>HOW MUCH DO WE KNOW ABOUT
THAT?
AND PARTICULARLY THE FACT THAT
SUBSTANCE ABUSE IS SELDOM A
CAUSATIVE FACTOR?
>>SO I'M GOING TO GO BACK TO
SOMETHING, HERE WE GO.
SO IF YOU DON'T MIND MY
RESHARING THE SCREEN FOR JUST A
SECOND.
I'M GOING TO PULL SOMETHING UP.
HERE.
SORRY.
I'LL HAVE TO SCROLL THROUGH TO
GET THERE.
BUT ONE OF THE RESULTS FROM THE
STILLBIRTH NETWORK, THAT THEY
WERE ABLE TO FIND A POSSIBLE OR
PROBABLE CAUSE OF DEATH IN 77%
OF CASES, BUT THAT LEAVES 23%
WHERE THERE WAS NO WAY OF
KNOWING.
SOME OF THOSE MAY BE FROM
GENETIC CAUSES THAT ARE JUST NOT
KNOWN YET.
SO THE ANSWER IS NOT ENOUGH.
WE DON'T KNOW ENOUGH.
AND I'LL DEFER TO YOU AND DR. R
EDR. REDDY WHO ARE THE REAL
EXPERTS ON THAT BUT CLEARLY THE
ANSWER IS WE DON'T KNOW ENOUGH.
>>I CAN HELP ANSWER THAT.
THE STILLBIRTH COLLABORATIVE
RESEARCH NETWORK, ONE OF THE
GOALS WAS TO REALLY UNDERSTAND
WHAT ARE THE RISK FACTORS FOR A
WOMAN HAVING A STILLBIRTH
COMPARED TO A CONTROL POPULATION
OF WOMEN HAVING LIVE BIRTHS.
SO WE IDENTIFIED RISK FACTORS
ASSOCIATED WITH STILLBIRTH, AND
YOU'RE RIGHT, SUBSTANCE USE WAS
NOT EVEN A COMMON FACTOR AT ALL.
IT WAS LOW PREVALENCE.
SO THEN THE GOAL WAS TO TAKE
THESE RISK FACTORS AND PUT THEM
ALL TOGETHER TO SEE IF WE COULD
FIGURE OUT WHICH WOMEN ARE AT
THE HIGHEST RISK FOR STILLBIRTH.
SO WE TOOK ALL THE RISK FACTORS
WE FOUND AND WE STUDIED OVER 500
FAMILIES THAT HAD SUFFERED A
STILLBIRTH.
UNFORTUNATELY, EVEN TAKING THOSE
FACTORS, SO TAKING MATERNAL AGE
AND PREGNANCY HISTORY AND ALL
THOSE FACTORS, EVEN BASELINE
DISEASES, WE COULD NOT -- WE
PREDICTED ONLY LIKE 19% OF THE
STILLBIRTHS.
SO REALLY, THAT'S A PROBLEM THAT
WE CANNOT IDENTIFY EARLY ON
WHO'S AT HIGHEST RISK.
SO THAT'S AN ISSUE PEOPLE HAVE
BEEN WORKING ON.
BY THE STILLBIRTH COLLABORATIVE
RESEARCH NETWORK PUBLISHED THAT
PAPER IN JAMA AND IT'S CORRECT
IN TERMS OF NOT BEING ABLE TO
PREDICT WHO'S AT RISK FOR
STILLBIRTH EARLY ON.
>>MONICA, THERE ARE MANY MORE
COMMENTS IN THE CHAT BOX RELATED
TO THE FACT THAT STILLBIRTH IS
NOT RARE.
AND I WANT TO RE-EMPHASIZE THE
POINT DR. BIANCHI MADE IN HER
INTRODUCTORY REMARKS, THAT
21,000 STILLBIRTHS IN THE UNITED
STATES EACH YEAR IS A HUGE
PROBLEM.
SOMETHING THAT WE, AS A
COMMUNITY, PERINATAL PEOPLE
INTERESTED IN THE HEALTH OF
MOTHERS AND CHILDREN ARE VERY
CONCERNED ABOUT.
SO PLEASE BE REASSURED THAT THAT
POINT HAS BEEN TAKEN INTO OUR
CONSIDERATION HERE.
>>I'VE BEEN READING ALL THE
CHAT AND I'VE ASKED THE PEOPLE
WHO ARE RUNNING THE TECHNICAL
ASPECTS OF THE MEETING TO KEEP A
COPY OF ALL THESE COMMENTS AND
QUESTIONS.
SOME OF THE MORE RECENT COMMENTS
SEEM TO HAVE TO DO WITH HOW
PREGNANT PEOPLE ARE ADVISED
DURING PREGNANCY AND WHAT THEY
ARE TOLD REGARDING RISK FACTORS,
AND WE HAVE A NUMBER OF OBVIOUS
TA TRIOBSTETRICIANS ON THE CALLO
MIGHT BE ABLE TO RESPOND TO
THAT.
WE'RE DEFINITELY TAKING NOTE OF
THESE COMMENTS.
I DON'T KNOW IF EVERYBODY ELSE
HAS ACCESS OR IS LOOKING AT THE
CHAT BOX, BUT THERE'S A LOT OF
TALK ABOUT CONCERNS OVER
TOXOPLASMOSIS, PEOPLE BEING
ADVISED HOW TO CHANGE THEIR CAT
LITTER BUT THEY'RE NOT WARNED
ABOUT THE RISKS OF STILLBIRTH.
CLEARLY THERE ARE PERSPECTIVES
FROM FAMILIES THAT HAVE BEEN
AFFECTED THAT MAY NOT AND
PROBABLY NOT HAVE BEEN CAPTURED
IN THE LITERATURE.
SO I THINK THAT'S ONE OF THE
THINGS I'M TAKING AWAY FROM THIS
MEETING RIGHT NOW, IS WE'RE
GOING TO NEED A BROADER
PERSPECTIVE GOING FORWARD, THAT
WE CAN'T -- WE'RE VERY
APPRECIATIVE OF THE ANALYSIS
THAT SARAH AND HER TEAM HAS
DONE, BUT THAT IS ONE ASPECT OF
THIS, AND IT'S COMING AS SHE
SAID FROM A -- ALMOST AN
INDIRECT PERSPECTIVE IN MANY
CASES BECAUSE THE LACK OF DIRECT
RESEARCH PUBLICATIONS ON
STILLBIRTH RESEARCH.
SO THIS IS AN OPPORTUNITY FOR
ALL OF YOU.
I'M NOT SURE HOW TO HANDLE ALL
THE QUESTIONS THAT ARE COMING
THROUGH.
>>I'M WONDERING, DR. BIANCHI,
IF I COULD INVITE EITHER
DR. SILVER OR DR. DUDLEY TO MAKE
ANY QUESTIONS IN REGARD TO THESE
QUESTIONS THAT HAVE COME UP.
AND WE WILL BE SURE OBVIOUSLY TO
DEAL WITH THESE IN OUR REMAINING
MEETINGS AND OBVIOUSLY INCLUDE
THEM IN THE REPORT AS WELL.
DR. SILVER?
>>THANKS.
I DON'T WANT TO GET THIS WRONG,
SO I DON'T WANT TO SPEAK FOR THE
PARENTS, AND THANK YOU TO ALL
THE PARENTS FOR BEING INVOLVED.
AND FOR COMMUNICATING SO WELL
AND SO PASSIONATELY.
WHAT I THINK I'M HEARING, AND
PLEASE LET ME KNOW IF WE'RE ON
THE RIGHT TRACK, IS THAT YOU
APPRECIATE ALL OF THE WORK THAT
WE'RE DOING TO GET INTO
INDIVIDUAL CAUSES OF STILLBIRTH
AND RISK FACTORS AND PATHWAYS,
BUT YOU ALSO WANT TO SEE US
FOCUSED ON RESEARCH THAT CAN
HAVE A DIRECT IMPACT ON
STILLBIRTH RIGHT AWAY.
THINGS LIKE STUDYING THE EFFECT
OF PUBLIC HEALTH MEASURES TO
INCREASE AWARENESS OF FETAL
MOVEMENT, STUDYING PUBLIC HEALTH
MEASURES TO INSTITUTE MORE
SURVEILLANCE.
SO IN ADDITION TO ASSESSING EACH
INDIVIDUAL PATHWAY, EACH
INDIVIDUAL RISK FACTOR, YOU'D
LIKE TO SEE US DO SOME STUDIES
THAT ARE MUCH MORE BROAD AND
MUCH MORE LIKELY TO HAVE AN
EFFECT SOONER RATHER THAN LATER
FOR THOSE KINDS OF STUDIES.
IS THAT FAIR?
>>THAT IS FAIR, BOB.
I WANT TO MAKE SURE WE DON'T GET
TOO FAR BEHIND WITH OUR
PROCEEDINGS BUT THAT'S A CLEAR
MESSAGE THAT WE'RE GETTING FROM
THE PARENTS.
DR. DUDLEY, HOW ABOUT YOU?
>>I'LL JUST ADD TO WHAT BOB
SAID.
I CAN'T SPEAK TO WHAT THE
GENERAL OBSTETRICIAN
GYNECOLOGIST TAKING CARE OF
INDIVIDUAL PATIENTS WOULD SAY,
BUT I FEEL CONFIDENT THAT MOST
OF US WHO ARE MFNs DISCUSS
FACTORS FOR STILLBIRTH OFTEN
WITH OUR PATIENTS.
TODAY I WAS IN CLINIC AND I
PROBABLY HAD THREE DISCUSSIONS
ABOUT IT.
AND A LOT OF JUST YOUR AVERAGE
OB-GYNs DON'T LIKE TO BRING
THIS TOPIC UP BECAUSE IT'S KIND
OF SCARY AND YOU DON'T
NECESSARILY WANT TO ALARM
PATIENTS.
SO CERTAINLY WE HEAR FROM THE
PARENTS AND BOB AND I AND ALL
OTHERS ON THE CALL WORK WITH
PARENTS ALL THE TIME IF THEY'VE
SUFFERED A STILLBIRTH.
AND WE DEFINITELY HEAR YOU ON
THAT AND WE DISCUSS THIS IN
GREAT DETAIL.
AND SO THE OTHER THING THAT I
THINK WE HAVE TO BE REALLY
CAREFUL OF IS TO NOT EQUATE
CAUSATION OF STILLBIRTH WITH
RISK FACTORS FOR STILLBIRTH.
AS BOB AND OTHER FOLKS WHO ARE
ON CALL WHO ARE A PART OF THE
CAUSE OF CAUSE OF DEATH
DETERMINATIONS FOR OUR PATIENTS
AND SCREEN WILL ATTEST TO, IT IS
SOMETIMES DREADFULLY DIFFICULT
TO IDENTIFY A CAUSE OF DEATH,
EVEN ONE OR TWO OR THREE
POTENTIAL CAUSES OF DEATH,
BECAUSE THERE'S SO MANY
CONTRIBUTING RISK FACTORS THAT
GO INTO THIS.
SO WE NEED TO BE VERY CAREFUL
ABOUT NOT EQUATING CAUSE OF
DEATH WITH A RISK FACTOR FOR
STILLBIRTH BECAUSE THEY MAY BE
TWO VERY DIFFERENT THINGS.
>>THANK YOU, DR. DUDLEY.
THAT'S A GREAT POINT.
ELLIE, YOU HAVE YOUR HAND UP.
>>THANK YOU SO MUCH.
I APPRECIATE IT.
I'LL TRY TO BE AS BRIEF AS
POSSIBLE.
THERE'S TWO THINGS I JUST WANT
TO ADDRESS.
THE FIRST IS THAT THE CAUSE OF
DEATH IS A VERY DIFFICULT THING
AS YOU STATED FOR US TO
DETERMINE, AND PART OF THAT IS
BECAUSE IN MY EXPERIENCE AS A
PARENT, PERINATAL PATHOLOGISTS
HAVE NOT BEEN WELL TRAINED INTO
HOW TO DO BOTH FETAL AUTOPSIES
AND PLACENTAL PATHOLOGY, AND I
ACTUALLY ENDED UP PAYING UP
TO -- OUT OF POCKET TO LOOK AT
SLIDES TO GIVE ME A TRUE CAUSE
OF DEATH.
AT TIMES IT LISTS THE CAUSE OF
DEATH AS STILLBIRTH WHICH IS NOT
A CAUSE, AND I REALLY -- THAT
WAS ADDRESSED EARLIER.
SO WHEN I SEE THESE STUDIES THAT
ARE LOOKING AT THERE'S RISK
FACTORS AND THAT ARE LOOKING AT
DRUG USE AND THESE DIFFERENT
THINGS, I'M THINKING, WHERE DO I
FIT INTO THAT STUDY?
BECAUSE THE ACTUAL CAUSE OF MY
SON'S DEATH WAS CORD
COMPRESSIONS.
AND SO I NEVER SEE CORD
COMPRESSIONS ACTUALLY, YOU KNOW,
ADDRESSED IN A STUDY UNLESS IT'S
A STUDY THAT'S DONE BY THE
PEOPLE WHO ARE ACTUALLY WORKING
TO PREVENT STILLBIRTH, AND WE DO
SEE THOSE STUDIES, I JUST
HAVEN'T SEEN THEM IN THIS
PARTICULAR WORKING GROUP.
OR I'VE SEEN THEM DONE IN
STUDIES IN DIFFERENT COUNTRIES.
SO I THINK MY QUESTION IS, THESE
STUDIES THAT YOU BROUGHT UP
EARLIER, ARE THEY LOOKING AT
TRUE CAUSES BECAUSE MY SON'S
DEATH WAS NEVER ACTUALLY
RECORDED OR REPORTED.
I WAS ACTUALLY DISCOURAGED FROM
GETTING AN AUTOPSY, AND THEN
WHEN I DID HAVE THE PLACENTAL
PATHOLOGY, I WAS GIVEN A WRONG
CAUSE OF DEATH, HAD TO WAIT A
YEAR AND A HALF AND PAY $400 TO
GET THE CORRECT CAUSE OF DEATH,
AND THAT WAS NEVER RECORDED
ANYWHERE.
SO I'M NEVER GOING TO SHOW UP IN
A STUDY.
AND THAT HAS BEEN THE LIVED
EXPERIENCE OF PLENTY OF PARENTS.
AND I THINK THE OTHER THING THAT
NEEDS TO BE ADDRESSED IS THAT
80% IF NOT MORE, I BELIEVE THE
NUMBERS SHOW AT LEAST 80% OF
PARENTS WHO HAVE EXPERIENCED A
STILLBIRTH WILL TELL YOU THEY
ALSO EXPERIENCED REDUCED FETAL
MOVEMENT.
THAT IS A HUGE RISK FACTOR, AND
GRANTED IT IS NOT A MEDICAL RISK
FACTOR, BUT IT IS THE LIVED
EXPERIENCE OF NEARLY EVERY
SINGLE PARENT I HAVE SPOKEN TO,
THAT THEY HAVE EXPERIENCED
REDUCED FETAL MOVEMENT, AND A
MAJORITY OF US, NEARLY ALL OF US
WERE NEVER INFORMED TO MONITOR
OUR BABY'S MOVEMENTS.
AND SO THE IDEA THAT WE DON'T
WANT TO MAKE PARENTS AFRAID, I
THINK IS SOMETHING THAT YOU NEED
TO RE-ASSESS BECAUSE WE ARE
WARNED ABOUT LISTERIA AND WE ARE
WARNED ABOUT SIDS AND WE ARE
WARNED ABOUT SO MANY OTHER
ASPECTS OF VERY SCARY THINGS
THAT CAN HAPPEN TO OUR BABIES
AND TO OUR PREGNANCY.
BUT WE ARE NEVER WARNED ABOUT
THE THINGS THAT TRULY IS NOT
RARE, AND I STILL DON'T FEEL
LIKE THAT QUESTION WAS ANSWERED
AS TO -- YOU KNOW, I COMPLETELY
UNDERSTAND THAT THIS IS NOT A
STATISTICALLY SIGNIFICANT EVENT,
BUT WHEN YOU COMPARE TO THE
OTHER THINGS THAT WE ARE WARNED
ABOUT, IT IS INCREDIBLY MORE STA
TIMORESTATISTICALLY SIGNIFICANTN
YOU COMPARE TO LISTERIA AND
SIDS.
SO FIRST OUR CAUSES OF DEATH ARE
NOT BEING REPORTED, AND SO I
HIGHLY DOUBT THE ACCURACY OF
THOSE STUDIES.
AND SECONDLY, THAT YOU HAVE TO
LEARN FROM OUR LIVED EXPERIENCE
WHEN WE TELL YOU THAT WE ARE NOT
BEING WARNED ABOUT REDUCED FETAL
MOVEMENT.
SO HOPE THAT HELPS.
>>IT DOES, ELLIE, THANK YOU SO
MUCH.
THIS IS VERY HELPFUL, AND DULY
NOTED.
ANY OF THE OTHER -- UMA, DO YOU
HAVE ANY OTHER COMMENTS
>>THANK YOU FOR YOUR COMMENTS.
AND THEN I SEE IN THE CHAT ALSO
ANDREW ASKING QUESTIONS ABOUT
THE CAUSE OF DEATH.
SO THAT POINT IS VERY IMPORTANT.
SO BACK WHEN THE STILLBIRTH
COLLABORATIVE RESEARCH NETWORK
WAS STARTED IN 2003 ACTUALLY,
THERE WAS NOTHING IN THE
LITERATURE, AS A CLINICIAN,
BASICALLY YOU HAD NOTHING TO GO
BY TO COUNSEL FAMILIES THAT HAD
THIS DEVASTATING OUTCOME.
SO WHEN THE STILLBIRTH
COLLABORATIVE RESEARCH NETWORK
WAS STARTED AND LOOKING AT CAUSE
OF DEATH, THIS IS WHAT THE STATE
OF THE ART PERINATAL PATHOLOGY,
SO ALL THE CONCERNS AND DREW AND
A LOT HAVE RAISED ABOUT THE
QUALITY OF THE EVALUATION, SO HE
ASKED ABOUT HOW ACCURATE ARE THE
FINDINGS, 77% THERE WAS A CAUSE,
AND THAT'S WITH A THUR YOE
WORKUP, SO STATE OF THE ART
AUTOPSY DONE BY A TRAINED
PERINATAL PATHOLOGIST, CAREFUL
EVALUATION OF THE PLACENTA, ALL
THE MATERNAL LAB TESTING.
OUR STUDY COORDINATES TALKED TO
FAMILIES, TALKED TO PREGNANT
PEOPLE, TO THE DADS, THE FAMILY,
ABOUT THEIR EXPERIENCES AROUND
THE STILLBIRTH, SO THEY DID ASK
QUESTIONS ABOUT EVEN FETAL
MOVEMENT, SO WE TALKED DIRECTLY
TO THE WOMEN THEMSELVES.
SO I THINK THAT'S WHY IT'S SO
HIGH, 77%, SO THAT DOES INCLUDE
AUTOPSY, AND THERE'S A PAPER
PUBLISHED BY DR. PAIGE OUT OF
UTAH ABOUT THE EVALUATION AND
HOW MUCH IT IMPROVES FINDING A
CAUSE.
BUT THAT'S IN A STATE-OF-THE-ART
STUDY.
IN REAL LIFE, YEAH, YOU DON'T
HAVE ACCESS TO QUALITY PERINATAL
PATHOLOGY, QUALITY PLACENTAL
EVALUATION, MAY NOT GET THE
TEST, SO YOUR POINTS ARE WELL
TAKEN .
>>MONICA, I WANT TO MAKE SURE
THAT WE GET BACK ON TRACK.
>>YES.
>>THERE WILL BE TIME FOR MORE
QUESTIONS AFTER YOUR PANEL
SPEAKERS ARE DONE.
WOULD YOU LIKE TO MOVE ON TO THE
NEXT SPEAKER?
>>WE WERE ALSO THINKING TO TAKE
A FIVE MINUTES BREAK AT THIS
POINT?
>>SURE.
>>JUST TO GIVE SOME TIME TO
RE-ASSESS A FEW THINGS IN THE
BACKGROUND.
AND SO WE'LL COME BACK, I WILL
SAY AT 2:55 SOUNDS GOOD?
>>2:55 SOUNDS GOOD.
SO HOW ABOUT A SMALL BIO BREAK
AND --
>>EXACTLY.
>>I WILL BE BACK.
>>SOUNDS GOOD.
THANK YOU FOR EVERYONE.
>>I BELIEVE WE ARE BACK,
EVERYONE.
THANK YOU FOR THE DISCUSSION
THAT WE HAD UNTIL NOW.
NOW WE ARE READY TO OUR NEXT
PRESENTER, DR. ELIZABETH
GREGORY.
A SCIENTIST FOR THE CENTERS FOR
DISEASE CONTROL AND PREVENTION
IN THE NATIONAL CENTER FOR
HEALTH STATISTICS.
AND SHE'S GOING TO PRESENT FETAL
DEATH IN THE UNITED STATES.
AND WE OPEN IT AGAIN FOR
DISCUSSION.
THANK YOU, DR. GREGORY.
>>HELLO.
I AM DR. ELIZABETH GREGORY.
TODAY I'LL BE TALKING TO YOU
ABOUT FETAL DEATHS.
AND I MANAGE THE NATIONAL FETAL
DEATH FILE.
TODAY I'LL BE TALKING TO YOU
ABOUT FETAL DEATHS IN THE UNITED
STATES.
>>SORRY, DR. GREGORY, CAN WE
SEE THE SLIDES?
>>SURE.
SORRY.
HOLD ON.
>>NO, DON'T WORRY.
>>CAN YOU SEE IT NOW?
>>YES.
YOU ARE NOT IN A PRESENTER MODE
RIGHT NOW.
NOW WE ARE.
THANK YOU.
>>BEFORE I START, I WOULD LIKE
TO ACKNOWLEDGE MY COLLEAGUES,
JOYCE MARTIN, AND DONNA HOYER,
WHO ALSO WORK ON FETAL DEATHS.
TODAY I'LL BE TALKING TO YOU
ABOUT THE IMPORTANCE OF FETAL
DEATH AND VITAL STATISTICS FETAL
DEATH DATA, DEFINITIONS AND
REPORTING REQUIREMENTS, HISTORY
AND TYPES OF FETAL DEATH
INFORMATION COLLECTED,
CHALLENGES WITH FETAL DEATH
REPORTING AND DATA QUALITY
ISSUES, DATA QUALITY IMPROVEMENT
EFFORTS AND RESOURCES, DATA
AVAILABILITY, AND TRENDS IN
SELECTED CHARACTERISTICS OF
FETAL DEATHS IN THE UNITED
STATES FOR 2020.
I'LL START WITH A BRIEF OVERVIEW
ABOUT THE IMPORTANCE OF FETAL
DEATH.
FETAL DEATHS ARE PART OF THE
CONTINUUM OF PREGNANCY OUTCOMES.
FETAL LOSS IS OFTEN A
HEARTBREAKING TRAGEDY FOR WOMEN
AND FAMILIES TH.
THE CAUSES OF FETAL DEATH ARE
POORLY UNDERSTOOD BUT BELIEVED
TO BE ASSOCIATED WITH FETAL
INFECTIONS, NON-COMMUNICABLE
DISEASES, CHROMOSOMAL
ABNORMALITIES, AND OBSTETRIC
COMPLICATIONS.
ALTHOUGH QUITE DATED, BASED ON
THE NATIONAL SURVEY OF FAMILY
GROWTH, CONDUCTED BY THE CDC'S
NATIONAL CENTER FOR HEALTH
STATISTICS, IT IS ESTIMATED THAT
IN 2010, THERE WERE MORE THAN
1 MILLION FETAL LOSSES IN THE
UNITED STATES, ACCOUNTING FOR
ABOUT 17% OF ALL PREGNANCIES.
THE VAST MAJORITY OF THOSE
LOSSES OCCURRED BEFORE 20 WEEKS
OF GESTATION.
AN UPDATED ANALYSIS EXPECTED TO
BE PUBLISHED LATER THIS YEAR
THIS MIGHT BE A SLIGHT
UNDERESTIMATE.
FETAL GESTATION ARE CONSIDERED,
SLIGHTLY MORE FETAL DEATHS THAN
INFANT DEATHS OCCURRED IN THE
UNITED STATES IN 2020.
NOW I'LL HIGHLIGHT THE
IMPORTANCE OF VITAL STATISTICS
FETAL DEATH DATA.
VIE VITAL STATISTICS DATA ARE TE
MOST COMPREHENSIVE SOURCE OF
U.S. DATA ON FETAL DEATHS AT 20
WEEKS OF GESTATION OR MORE.
THE ONLY OTHER NATIONAL SOURCE
OF INFORMATION ON FETAL DEATHS
IS THE NATIONAL SURVEY OF FAMILY
GROWTH, WHICH DOES NOT PROVIDE
DETAILED INFORMATION ON
GEOGRAPHY, SMALLER POPULATIONS,
MEDICAL AND HEALTH INFORMATION,
OR RELIABLE GESTATIONAL AGE, ALL
OF WHICH ARE AVAILABLE IN DATA
IN THE FETAL DEATH REPORT.
THE STUDY OF FETAL DEATHS CAN
PROVIDE IMPORTANT CLUES ON HOW
VARIOUS HEALTH CONDITIONS AND
RISK FACTORS CAN AFFECT
PREGNANCY OUTCOMES, IT IS
IMPORTANT FOR IDENTIFYING
PREVENTABLE RISKS OF FETAL LOSS.
NOW I'LL BRIEFLY GO OVER
DEFINITIONS AND REPORTING
REQUIREMENTS.
ACCORDING TO THE MODEL LAW
DEFINITION, FETAL DEATH IS
DEFINED AS DEATH PRIOR TO THE
COMPLETE EXPULSION OR EXTRACTION
FROM ITS MOTHER OF A PRODUCT OF
HUMAN CONCEPTION, IRRESPECTIVE
OF THE DURATION OF PREGNANCY AND
WHICH IS NOT AN INDUCED
TERMINATION OF PREGNANCY.
THE DEATH IS INDICATED BY THE
FACT THAT AFTER SUCH EXPULSION
OR EXTRACTION, FETUS DOES NOT
BREATHE OR SHOW ANY OTHER
EVIDENCE OF LIFE SUCH AS BEATING
OF THE HEART, PULSATION OF THE
UMBILICAL CORD OR DEFINITE
MOVEMENT OF VOLUNTARY MUSCLES.
ALL STATES USE DEFINITIONS OF
FETAL DEATH THAT ARE
FUNDAMENTALLY CONSISTENT WITH
THE MODEL LAW.
MOST STATES REQUIRE REPORTING OF
FETAL DEATHS OCCURRING AT 20
WEEKS OF GESTATION OR MORE, OR
AT A BIRTH WEIGHT OF 350 GRAMS
OR MORE.
AS A RESULT, NATIONAL FETAL
DEATH DATA ARE ONLY AVAILABLE
FOR FETAL DEATHS AT 20 WEEKS
GESTATION OR MORE.
NOW I'LL TALK A BIT ABOUT THE
HISTORY OF FETAL DEATH REPORTING
IN THE UNITED STATES.
HERE YOU'LL SEE A TIMELINE OF
THE HISTORY OF FETAL DEATH
REPORTING IN THE U.S. FROM THE
BEGINNING OF COLLECTION AND
REPORTING BY THE U.S. CENSUS IN
1918 TO THE ESTABLISHMENT OF THE
FIRST U.S. STANDARD FETAL DEATH
CERTIFICATE IN 1939, TO THE
MANDATED COLLECTION AND
PUBLICATION OF VITAL STATISTICS
DATA BY NCHS IN 1974.
SINCE 1939, THERE HAVE BEEN FOUR
REVISIONS OF THE U.S. STANDARD
FETAL DEATH REPORT.
INCLUDING 1955, 1978, 1989, AND
2003.
BEGINNING WITH 1978, REVISIONS
WERE DESIGNED TO CAPTURE
INFORMATION SIMILAR TO THAT ON
THE BIRTH CERTIFICATE.
CAUSE OF DEATH DATA HAVE BEEN
INCLUDED SINCE 1939.
THE 2003 REVISION WHICH IS THE
VERSION CURRENTLY IN USE
EXPANDED THE MEDICAL AND HEALTH
INFORMATION CAPTURED AND
MODIFIED THE CAUSE OF DEATH
SECTION.
IN REGARD TO MODIFICATIONS FOR
THE CAUSE OF DEATH ITEM, THE OLD
DESIGN GUIDED THE CERTIFIER TO
REPORT THE UNDERLYING CAUSE OR
CONDITION WHILE THE NEW DESIGN
PROMPTS THE CERTIFIER TO REPORT
MORE SPECIFIC CONDITIONS AND
EXPECTS THEM TO BE ABLE TO
SEPARATELY REPORT THE INITIATING
CAUSE OR CONDITION.
ESSENTIALLY THE SAME THINGS CAN
BE REPORTED IN EACH FORMAT BUT
THEY GO DIFFERENT PLACES.
ON TOP YOU'LL SEE THE -- ON THE
BOTTOM YOU'LL SEE THE SECTION
FOR THE 2003 REVISION.
NOW I WILL TALK TO YOU ABOUT
TYPES OF FETAL DEATH INFORMATION
THAT ARE CURRENTLY COLLECTED.
THE REPORT OF FETAL DEATH
COLLECTS DIFFERENT KINDS OF
INFORMATION.
THIS INCLUDES LEGAL INFORMATION
SUCH AS NAMES OF PARENTS,
GRAPHIC INFORMATION SUCH AS AGE,
RACE AND HISPANIC ORIGIN, AND
EDUCATION OF THE MOTHER, MEDICAL
AND HEALTH INFORMATION LIKE
PRENATAL CARE AND RISK FACTORS
DURING THE PREGNANCY, AND CAUSE
OF DEATH INFORMATION.
WHILE SOMETIMES UNKNOWN, CAUSE
OF DEATH IS A CRITICAL FACTOR IN
UNDERSTANDING HOW TO PREVENT
SUCH LOSSES IN THE FUTURE.
WE BEGAN TO ROUTINELY RELEASE
CAUSE OF DEATH DATA BEGINNING IN
2014.
WHILE A WEALTH OF FETAL DEATH
DATA ARE COLLECTED ON THE REPORT
OF FETAL DEATH, THERE ARE SOME
CHALLENGES WITH FETAL DEATH
REPORTING.
THESE INCLUDE ISSUES SUCH AS,
MISCLASSIFICATION OF FETAL DEATH
AS LIVE BIRTH, LIVE BIRTH AS
FETAL DEATH, AND ABORTION AS
FETAL DEATH.
THE LOSS IS A HEARTBREAKING
RESULT WHICH CAN MAKE IT
DIFFICULT FOR HOSPITAL STAFF TO
FOLLOW UP WITH THE GRIEVING
FAMILY AND COLLECT COMPLETE AND
ACCURATE DATA.
FETAL DEATH REPORTS MAY BE
COMPLETED BY HOSPITAL STAFF WHO
AREN'T FAMILIAR WITH OR DON'T
HAVE ACCESS TO THE NECESSARY
INFORMATION.
CAUSE OF DEATH MAY BE DIFFICULT
TO DETERMINE, AND IS FREQUENTLY
UNKNOWN AT THE TIME THE REPORT
IS COMPLETED.
LACK OF RESOURCES FOR VITAL
STATISTICS IN GENERAL RESULTS IN
FETAL DEATHS AS LOWER PRIORITY
AND BIRTHS AND DEATHS AT BOTH
STATE AND NATIONAL LEVELS.
LACK OF ELECTRONIC FETAL DEATH
REGISTRATION SYSTEMS ACROSS
JURISDICTIONS.
SMALL NUMBER OF EVENTS BY STATE
MAKE IT DIFFICULT TO RELIABLY
TRACK AND DESCRIBE FETAL DEATHS
AT THE STATE AND SOMETIMES AT
THE NATIONAL LEVEL.
AND SOME UNDERREPORTING OF
EVENTS AT EARLIER GESTATIONAL
AGES, FOR EXAMPLE, JURISDICTIONS
WHICH REPORT AT GESTATIONAL AGES
LESS THAN 20 WEEKS TEND TO
APPEAR TO HAVE MORE COMPLETE
REPORTING AT 20 TO 23 WEEKS.
AND AS A RESULT, THERE IS WIDE
VARIABILITY IN DATA QUALITY BY
JURISDICTION.
AS A RESULT OF THE
AFOREMENTIONED CHALLENGES OF
COLLECTING FETAL DEATH DATA, WE
DO EXPERIENCE SOME DATA QUALITY
ISSUES.
FOR EXAMPLE, THE UNKNOWN LEVEL
FOR A GIVEN ITEM IS USUALLY
HIGHER FOR FETAL DEATHS IN
COMPARISON WITH BIRTHS.
HERE YOU'LL SEE THAT FOR
GESTATIONAL AGE, ALTHOUGH THE
DIFFERENCE IS RELATIVELY SMALL,
FETAL DEATHS HAVE AN UNKNOWN
RATE OF 0.7% COMPARED WITH 0.1%
FOR BIRTHS.
FOR OTHER ITEMS, THE DIFFERENCES
ARE LARGER, SUCH AS 7.1%
COMPARED WITH 0.1% FOR BIRTH
WEIGHT, 11.9% COMPARED WITH 3.9%
FOR DATE OF FIRST PRENATAL CARE
VISIT MONTH, AND 5.6% COMPARED
WITH 0.1% FOR GESTATIONAL
DIABETES.
ADDITIONALLY, UNKNOWN LEVELS CAN
RANGE WIDELY BOTH BY ITEM AND BY
REPORTED AREA.
FOR EXAMPLE, HERE YOU'LL SEE
UNKNOWN LEVELS FOR MOTHERS
EDUCATION FOR THE 50 STATES IN
THE DISTRICT OF COLUMBIA IN NEW
YORK CITY FOR 2020.
AT ONE EXTREME, ONE REPORTING
AREA HAS AN UNKNOWN LEVEL OF
69.8% AND AT THE OTHER, THREE
HAVE AN UNKNOWN LEVEL OF 0%.
UNSPECIFIED CAUSE OF FETAL DEATH
IS ALSO OF CONCERN.
LEVELS ARE EXPECTED TO BE HIGH
BUT THERE IS A LARGE RANGE AMONG
STATES.
IN OUR REPORTS, WE PUBLISHED
DATA ON REPORTING AREAS WHERE
CAUSE OF DEATH WAS BASED ON A
2003 FETAL DEATH REPORT REVISION
AND LESS THAN 50% OF DEATHS WERE
ATTRIBUTED TO FETAL DEATH OF
UNSPECIFIED CAUSE.
HERE, FOR 2020, YOU'LL SEE THAT
43 STATES IN THE DISTRICT OF
COLUMBIA MEET THESE
REQUIREMENTS.
SOME REPORTING AREAS BOUNCE
AROUND BUT 50% REPORTING
THRESHOLD FROM YEAR TO YEAR.
OVER THE YEARS, WE HAVE
IMPLEMENTED MANY DATA QUALITY
IMPROVEMENT EFFORTS TO HELP
ADDRESS THESE ISSUES.
FIRST THERE WAS THE 2003
REVISION OF THE REPORT OF FETAL
DEATH.
THE MAJOR FOCUS OF THE REVISION
WAS TO IMPROVE DATA QUALITY BY
COLLECTING ONLY ITEMS
ANTICIPATED TO BE OF GOOD
QUALITY, STANDARDIZING AND
PROMULGATING ITEM DEFINITIONS
AND JURISDICTIONAL ELECTRONIC
BIRTH REGISTRATION SYSTEMS,
COLLECTING DATA FROM THE BEST
SOURCES, CREATING SEPARATE
WORKSHEETS, BOTH PATIENT AND
FACILITY WORKSHEET AND IMPROVING
THE CAUSE OF DEATH SECTION.
FOR THE WORKSHEETS, THE
INFORMATION ON THE PATIENT'S
WORKSHEET WHICH CONTAINS LEGAL
AND DEMOGRAPHIC INFORMATION TO
COME FROM THE MOTHER, THE
INFORMATION ON A FACILITY
WORKSHEET WHICH CONTAINS MEDICAL
AND HEALTH INFORMATION SHOULD
COME FROM THE MEDICAL RECORDS
AND THE CLINICIAN.
AS I MENTIONED BEFORE, THE CAUSE
OF DEATH SECTION OF THE U.S.
STANDARD REPORT OF FETAL DEATH
WAS REDESIGNED WITH A 2003
REVISION.
THE GOAL OF THE REDESIGN WAS TO
IMPROVE THE QUALITY AND
SPECIFICITY OF INFORMATION
REPORTED FOR CAUSE OF DEATH.
IT WAS DESIGNED TO BE CONSISTENT
WITH DATA COLLECTION
INSTRUCTIONS IN THE WORLD HEALTH
ORGANIZATION'S INTERNATIONAL
STATISTICAL CLASSIFICATION OF
DISEASES AND RELATED HEALTH
PROBLEMS REVISION WHILE
PROVIDING MORE GUIDANCE ON
DESIRED INFORMATION AND
RETAINING FLEXIBILITY TO REPORT
ANY CAUSE.
ADDITIONALLY, IN 2014 FOLLOWING
AN EXTENSIVE REVIEW, 36 ITEMS
WERE ULTIMATELY DROPPED FROM THE
NATIONAL FETAL DEATH FILE DUE TO
POOR DATA QUALITY AND/OR A LACK
OF POTENTIAL FOR IMPROVEMENT.
THE GOAL WAS TO IMPROVE THE
QUALITY OF REMAINING ITEMS,
ESPECIALLY FETAL CAUSE OF DEATH
DATA.
THIS CHANGE WAS IMPLEMENTED TO
THE NATIONAL FILE BEGINNING WITH
THE 2014 DATA YEAR.
WE'VE ALSO DEVELOPED SOME
RESOURCES TO HELP FACILITATE
IMPROVEMENTS IN DATA QUALITY.
FOR EXAMPLE, THIS IS A DECISION
TREE THAT WAS DEVELOPED TO
OUTLINE GUIDELINES FOR REPORTING
LIVE BIRTHS, FETAL DEATHS, AND
INDUCED TERMINATIONS OF
PREGNANCY.
HERE IS THE GUIDE TO COMPLETING
THE FACILITY WORKSHEETS WITH A
CERTIFICATE OF LIVE BIRTH AND
REPORT OF FETAL DEATH, WHICH WAS
DEVELOPED TO ASSIST IN
COMPLETING THE FACILITY
WORKSHEETS FOR THE REVISED
CERTIFICATE OF LIVE BIRTH AND
REPORT OF FETAL DEATH.
IT PROVIDES DEFINITIONS,
INSTRUCTIONS, SOURCES, AND
COMMON ABBREVIATIONS AND
ACRONYMS FOR ITEMS ON THE
FACILITY WORKSHEETS OF THE
CERTIFICATE OF LIVE BIRTH AND
REPORT OF FETAL DEATH.
E-LEARNING TRAINING WAS
DEVELOPED FOR CLINICAL AND
NON-CLINICAL STAFF AT HOSPITALS
OR FREE-STANDING -- CENTERS WHO
ARE RESPONSIBLE FOR COMPLETING
THE MEDICAL AND HEALTH
INFORMATION FOR THE CERTIFICATE
OF LIVE BIRTH AND REPORT OF
FETAL DEATH.
IT WAS DESIGNED TO INCREASE
KNOWLEDGE OF THE IMPORTANCE OF
AND BEST PRACTICES FOR REPORTING
BIRTH CERTIFICATE AND REPORT OF
FETAL DEATH INFORMATION,
INCLUDING INSTRUCTIONS ON HOW TO
COMPLETE THE CAUSE OF DEATH
SECTION ON THE REPORT OF FETAL
DEATH.
THE MEDICAL EXAMINERS AND
CORONER'S HANDBOOK ON DEATH
REGISTRATION AND FETAL DEATH IS
MEANT TO HELP THE ATTENDANT AT
DELIVERY OR THE MEDICAL EXAMINER
OR CORONER WHO IS RESPONSIBLE
FOR REPORTING THE CAUSE OF FETAL
DEATH PROVIDE HIS OR HER BEST
MEDICAL OPINION IN THE CAUSE OF
DEATH SECTION.
ADDITIONALLY, THE CAUSE OF FETAL
DEATH SHOULD REFLECT INFORMATION
FROM AUTOPSY OR OTHER TYPES OF
POSTMORTEM EXAMINATIONS
PERFORMED.
SOME FUTURE IMPROVEMENT EFFORTS
INCLUDE ASSESSING THE MORE
LIMITED ITEM REPORTING IS HAVING
A POSITIVE IMPACT ON DATA
QUALITY, ASSESSING THE
USEFULNESS OF FETAL CAUSE OF
DEATH DATA AND THE POTENTIAL FOR
IMPROVEMENT OF IT, DEVELOPING
ENHANCED TRAINING FOR DATA
PROVIDERS AND DEVELOPING MORE
COMPLETE TRAINING OR COMPLETE --
FOR COMPLETING CAUSE OF DEATH,
DEVELOPING STANDARDIZED
ELECTRONIC SYSTEMS THAT CAN BE
SHARED ACROSS JURISDICTIONS
WHICH CAN HELP SAVE ON COSTS,
AND AUTOMATING TRANSFER OF DATA
FROM HOSPITAL MEDICAL RECORDS TO
THE STATE SYSTEMS.
NOW I'LL TALK ABOUT AVAILABILITY
OF FETAL DEATH DATA.
WE NOW ROUTINELY PUBLISH THREE
STANDARD REPORT ON FETAL DEATH
DATA.
THIS INCLUDES AN ANNUAL FETAL
MORTALITY REPORT, IT INCLUDES
CAUSE OF DEATH DATA, TRIENNIAL
FETAL CAUSE OF DEATH-SPECIFIC
FETAL MORTALITY REPORT, AND A
BIENNIAL PERINATAL MORTALITY
REPORT.
WE ALSO SOMETIMES RELEASE
SPECIAL REPORT.
FOR EXAMPLE, THE RESPONSE TO THE
NEED FOR MORE TIMELY DATA DUE TO
THE COVID-19 PANDEMIC.
WE'VE BEGUN RELEASING
PROVISIONAL FETAL MORTALITY
REPORTS WHICH ARE DUE TO BE
RELEASED LATER THIS YEAR.
ANNUAL FETAL DEATH DATA ARE
AVAILABLE ON OUR WEBSITE.
FETAL DEATH DATA ARE ALSO
AVAILABLE ON CDC -- FOR 2005 TO
2020, CAUSE OF DEATH DATA
INCLUDED FOR 2014 AND LATER.
NOW I'LL TALK ABOUT TRENDS AND
SELECTED CHARACTERISTICS OF
FETAL DEATHS IN THE UNITED
STATES FOR 2020.
AS I MENTIONED EARLIER, NATIONAL
DATA ON FETAL DEATHS ONLY
INCLUDES THOSE AT 20 WEEKS OF
GESTATION OR MORE.
WITH MINOR FLUCTUATIONS, THE
TOTAL U.S. FETAL MORTALITY RATE
HAS DECLINED 23% SINCE 1990.
WHEN THE RATE WAS 7.49.
IN 2020, 20,854 FETAL DEATHS AT
20 WEEKS OF GESTATION OR MORE
WERE REPORTED IN THE UNITED
STATES.
THE FETAL MORTALITY RATE WAS
5.74 FETAL DEATHS AT 20 WEEKS OF
GESTATION OR MORE PER 1,000 LIVE
BIRTHS AND FETAL DEATHS IN 2020,
WHICH WAS NOT SIGNIFICANTLY
DIFFERENT FROM THE RATE OF 5.7
SEER OLE IN 2019.
5.70
IN 2019.
HERE ON A DIFFERENT SCALE,
YOU'LL SEE TRENDS FOR EARLY
FETAL MORTALITY.
THE NUMBER OF FETAL DEATHS AT 20
TO 27 WEEKS OF GESTATION PER
1,000 LIVE BIRTHS IN FETAL
DEATHS AT 27 WEEKS OF GESTATION,
AND LATE FETAL MORTALITY, THE
NUMBER OF FETAL DEATHS AT 28
WEEKS OF GESTATION OR MORE FOR
1,000 LIVE BIRTHS AND FETAL
DEATHS AT 28 WEEKS OF GESTATION
OR MORE, WI FROM 2014 TO 2020.
THIS IS BECAUSE BEGINNING IN
2014, WE SWITCHED FROM THE DATE
OF THE LAST NORMAL MENSES TO THE
OBSTETRIC ESTIMATE OF THE
PRIMARY MEASURE OF GESTATIONAL
AGE, WHICH CREATED A
DISCONTINUITY IN BOTH THE EARLY
AND LATE FETAL MORTALITY RATES.
IN 2020, THE EARLY FETAL
MORTALITY RATE WAS 2.97.
THIS RATE HAS DECLINED 6% SINCE
2014.
THE LATE FETAL MORTALITY RATE
WAS 2.78 IN 2020.
THIS RATE HAS BEEN STABLE SINCE
2014.
IN 2020, FETAL MORTALITY RATES
CONTINUE TO VARY BY RACE AND
HISPANIC ORIGIN.
WHITES WRATES WERE HIGHEST FOR
NON-HISPANIC -- AND NON-HISPANIC
BLACK WOMEN FOLLOWED BY
NON-HISPANIC AMERICAN INDIAN OR
ALASKA NATIVE WOMEN.
THE RATE WAS LOWEST FOR
NON-HISPANIC ASIAN WOMEN
FOLLOWED BY NON-HISPANIC WHITE
AND HISPANIC WOMEN.
IN 2020, BY HISPANIC SUBGROUP,
RATES RANGE FROM 4.41 FOR
DOMINICAN WOMEN TO 5.87 FOR
OTHER AND UNKNOWN HISPANIC
WOMEN.
HOWEVER, DIFFERENCES AMONG THE
GROUPS WERE GENERALLY NOT
SIGNIFICANT.
FETAL MORTALITY RATES VARIED BY
MATERNAL AGE AND WERE HIGHEST
FOR FEMALES UNDER 15 AND THOSE
AGED 45 AND OVER, AND LOWEST FOR
WOMEN AGED 25 TO 29 AND 30 TO
34.
BY GESTATIONAL AGE, THE FETAL
MORTALITY RATE WAS HIGHEST AT 20
TO 23 WEEKS OF GESTATION,
DECLINED TO A LOW AT 39 TO 40
AND 41 WEEKS OF GESTATION, AND
THEN INCREASED AT 42 WEEKS OF
GESTATION OR MORE.
BY BIRTH WEIGHT, THE FETAL
MORTALITY RATE WAS HIGHEST FOR
FETUSES WEIGHING LESS THAN
500 GRAMS, AND DECREASED WITH
INCREASING BIRTH WEIGHT TO A LOW
FOR FETUSES WEIGHTING 3,500 TO
3,999 GRAMS.
FETAL MORTALITY RATES THEN
INCREASED SLIGHTLY FOR FETUSES
WEIGHING 4,000 GRAMS OR MORE.
HERE ARE DATA ON A FEW OTHER
CHARACTERISTICS SUCH AS SEX OF
FETUS, TOBACCO USE DURING
PREGNANCY, AND PLURALITY.
FOR THESE CHARACTERISTICS, WE
FOUND THAT THE FETAL MORTALITY
RATE FOR MALE FETUSES WAS 5%
HIGHER THAN THE RATE FOR FEMALE
FETUSES.
THE FETAL MORTALITY RATE FOR
WOMEN WHO SMOKE DURING PREGNANCY
WAS MORE THAN ONE AND ONE HALF
TIMES HIGHER THAN THE RATE FOR
WOMEN WHO DID NOT SMOKE DURING
PREGNANCY.
AND THE FETAL MORTALITY RATE FOR
TWINS WAS MORE THAN TWICE THAT
FOR SINGLETONS.
THE RATE FOR TRIP LET OR HIGHER
ORDER DELIVERIES WHICH IS NOT
SHOWN WAS 28.72, WHICH IS MORE
THAN FIVE TIMES THAT FOR
SINGLETONS.
THERE ARE SOME SMALL DIFFERENCES
IN REPORTING REQUIREMENTS AROUND
20 WEEKS BY STATE, AND THE
ANNUAL NUMBER OF FETAL DEATHS
FOR SOME STATES CAN BE SMALL.
TO TRY TO ADDRESS THESE ISSUES,
HERE YOU'LL SEE FETAL MORTALITY
RATES BY STATE FOR FETAL DEATHS
AT 24 WEEKS OF GESTATION OR MORE
FOR THE LATEST COMBINED
THREE-YEAR PERIOD 2018 TO 2020.
FOR THIS TIME PERIOD, THE U.S.
FETAL MORTALITY RATE FOR FETAL
DEATHS AT 24 WEEKS OR MORE WAS
3.67.
FETAL MORTALITY RATES WERE
HIGHEST ABOVE 5.
IN THE DISTRICT OF COLUMBIA,
ARKANSAS, ALABAMA AND MISS SAY
PEEMISSISSIPPI, AND LOWEST, BELW
THREE, IN NEW MEXICO,
CONNECTICUT, MASSACHUSETTS, AND
IOWA.
NOW I'LL TALK A LITTLE BIT ABOUT
CAUSE OF DEATH DATA.
DATA ARE ONLY INCLUDED FOR
STATES WHERE CAUSE OF DEATH WAS
BASED ON A 2003 FETAL DEATH
REPORT REVISION, AND LESS THAN
50% OF DEATHS WERE ATTRIBUTED TO
FETAL DEATH OF UNSPECIFIED
CAUSE.
THE FIVE MOST COMMON SELECTED
CAUSES OF FETAL DEATH ACCOUNTED
FOR 89.6% OF FETAL DEATHS IN
43 STATES AND DISTRICT OF
COLUMBIA REPORTED AREA.
BY ORDER OF FREQUENCY, THESE
WERE: UNSPECIFIED CAUSE,
PLACENTAL CORD AND MEMBRANE
COMPLICATIONS, MATERNAL
CONDITIONS UNRELATED TO
PREGNANCY, AND CONGENITAL
MALFORMATIONS.
THE FIVE MOST COMMON SELECTED
CAUSES OF FETAL DEATH AND THE
TOP TWO CAUSES WERE THE SAME FOR
NON-HISPANIC WHITE, NON-HISPANIC
BLACK, AND HISPANIC WOMEN, WHILE
THE RANKING OF THE OTHER CAUSES
DIFFERED.
UNSPECIFIED CAUSE, PLACENTAL
CORD AND MEMBRANE COMPLICATIONS
WERE THE TWO MOST COMMON OF THE
SELECTED CAUSES FOR ALL THREE
GROUPS.
CONGENITAL MALFORMATIONS WAS THE
THIRD MOTO MOST COMMON CAUSE FOR
FETAL DEATHS FOR HISPANIC WHITE
WOMEN FOLLOWED BY MATERNAL
COMPLICATIONS AND MATERNAL
CONDITIONS UNRELATED TO
PREGNANCY.
AMONG NON-HISPANIC BLACK WOMEN,
MATERNAL COMPLICATIONS WAS THE
THIRD MOST COMMON CAUSE OF FETAL
DEATH.
MOO TERNL CONDITIONS UNROW
RELATED TO PREGNANCY WAS FOURTH
AND CONGENITAL MALFORMATIONS WAS
FIFTH.
AMONG HISPANIC WOMEN, MATERNAL
COMPLICATIONS WAS THE THIRD MOST
COMMON CAUSE OF FETAL DEATH.
CONGENITAL MALFORMATIONS WAS
FOURTH.
AND MATERNAL CONDITIONS
UNRELATED TO PREGNANCY WAS
FIFTH.
NOW TO SUMMARIZE WHAT I'VE
COVERED.
IN TERMS OF FETAL DEATH DATA FOR
2020, THE TOTAL U.S. FETAL
MORTALITY RATE WAS 5.74 IN 2020,
ESSENTIALLY UNCHANGED FROM 2019.
FETAL MORTALITY RATE HAS
DECLINED 23% SINCE 1990.
THE EARLY FETAL MORTALITY RATE
WAS 2.97 IN 2020, AND HAS
DECLINED 6% SINCE 2014.
THE LATE -- THE LATE FETAL
MORTALITY RATE WAS 2.78 IN 2020,
AND HAS BEEN STABLE SINCE 2014.
FETAL MORTALITY RATES WERE
HIGHEST FOR: NON-HISPANIC
NATIVE HAWAIIAN OR OTHER PACIFIC
ISLANDER AND NON-HISPANIC BLACK
WOMEN, FEMALES UNDER 15 AND AGED
45 AND OVER, WOMEN WHO SMOKED
DURING PREGNANCY, WOMEN WITH
MULTIPLE GESTATION PREGNANCIES,
MALE FETUSES, AND AT THE
EARLIEST GESTATIONAL AGES AND
LOWEST BIRTH WEIGHTS.
FIVE SELECTED CAUSES OF DEATH
ACCOUNTED FOR 89.6% OF FETAL
DEATHS WITH THE ORDER VARYING
SOMEWHAT BY RACE AND HISPANIC
ORIGIN.
OVERALL, FETAL DEATHS ARE PART
OF THE PREGNANCY CONTINUUM.
THERE ARE MORE FETAL DEATHS AT
20 WEEKS OF GESTATION OR MORE
THAN INFANT DEATHS IN THE U.S.,
BUT FETAL DEATHS ARE TOO OFTEN
OVERLOOKED.
VITAL STATISTICS DATA ARE THE
MOST COMPREHENSIVE SOURCE OF
U.S. DATA ON FETAL DEATHS OF 20
WEEKS OF GESTATION OR MORE, AND
PROVIDES THE OPPORTUNITY TO
CONDUCT DETAILED ANALYSES OF
FETAL DEATHS BY A VARIETY OF
ITEMS INCLUDING CAUSE OF DEATH.
DATA FILES AND A STANDARD REPORT
ARE RELEASED ANNUALLY, AS WELL
AS A NUMBER OF ADDITIONAL
STANDARD REPORTS SUCH AS A
TRI-ANNUAL REPORT ON FETAL CAUSE
OF DEATH.
WHILE THERE ARE SOME CHALLENGES
IN COLLECTING FETAL DEATH DATA,
A NUMBER OF DATA QUALITY
IMPROVEMENT EFFORTS HAVE BEEN
IMPLEMENTED I AND NEW RESOURCE,
SUCH AS E-LEARNING TRAINING, ARE
AVAILABLE.
EFFORTS TO IMPROVE DATA
QUALITY -- DATA TIMELINESS AND
QUALITY CONTINUE.
THANK YOU.
>>THANK YOU, DR. GREGORY, FOR
YOUR WONDERFUL PRESENTATION.
AND I BELIEVE IN THE CHAT, THERE
WERE ALREADY SOME OF THE ISSUES
THAT YOU BROUGHT UP, WHICH WERE
THE LIMITATION ON THE DATA THAT
WE ARE ABLE TO ABSTRACT.
AND THESE ARE SOME OF THE
MANDATE THAT WE ARE TRYING TO
COVER, CAN WE IMPROVE THE DATA
COLLECTION, CAN WE IMPROVE
MANDATE WHERE WE ADDRESS THE
COMMUNITY THAT ARE AT HIGH RISK
OF STILLBIRTH.
AND HOW CAN WE ALSO ADDRESS THE
BURDEN ON THE FAMILY AND THE
EMOTIONAL SUPPORT THAT THEY NEED
TO UNDERSTAND WHAT'S HAPPENING,
AND THE RISK FACTOR.
AND THESE ARE ALL THE THINGS
THAT WE HAVE ALSO BEEN MANDATED
TO ADDRESS, HOW CAN WE FIGURE IT
OUT, HOW WE CAN MOVE FORWARD.
SO NOW WE ARE OPEN AGAIN FOR THE
DISCUSSION.
I'D INVITE EVERYONE TO PLEASE
RAISE YOUR HAND OR PUT IT IN THE
CHAT.
>>THANKS, DR. GREGORY, FOR A
GREAT PRESENTATION.
I THINK IT'S ALSO IMPORTANT TO
NOTE THAT SOME OF THE CHANGES
THAT NEEDED TO BE MADE IN TERMS
OF VARIABLES HAS REALLY HELPED
TO SPEED UP THE REPORTING, SO
THAT'S VERY -- THAT'S A VERY
IMPORTANT ISSUE.
SO IT SEEMS SOME OF THE
QUESTIONS, DR. GREGORY, IS AGAIN
WHAT -- I KNOW YOU ADDRESSED
SOME OF THESE ISSUES IN YOUR
PRESENTATION, BUT WHAT ELSE CAN
WE DO TO IMPROVE THE DATA
COLLECTION AND ABSTRACTION, AS
YOU WERE TALKING ABOUT, AND TO
OBTAIN MORE INFORMATION ABOUT
THE CAUSE OF DEATH.
OR MORE AVAILABLE INFORMATION.
>>WE'RE CERTAINLY ALWAYS
LOOKING FOR WAYS TO HELP IMPROVE
DATA QUALITY ANYWHERE WE CAN.
WE'VE IMPLEMENTED THE E-LEARNING
TRAINING AND WE'RE TRYING TO
FIND WAYS TO IMPROVE THAT TO
HELP SPECIFICALLY WITH CAUSE OF
DEATH AND GETTING THE MOST
DETAILED, MOST ACCURATE
INFORMATION WE COULD POSSIBLY
GET, HELPING MEDICAL EXAMINERS
PROVIDE US WITH THAT
INFORMATION.
CERTAINLY THINGS OF THAT NATURE,
AND AS DR. BARFIELD MENTIONED,
DROPPING ITEMS THAT WERE POORLY
REPORTED OR DIDN'T SEEM LIKE
THEY COULD BE IMPROVED IN ORDER
TO HELP IMPROVE THE QUALITY OF
THE REMAINING ITEMS, ESPECIALLY
CAUSE OF DEATH.
>>ANY OTHER QUESTIONS FROM THE
PANEL, THE WORKING GROUP
MEMBERS?
OR ANY COMMENTS?
>>I HAD A QUESTION, ARE THERE
EFFORTS AT THE WORK WITH THE
PERINATAL QUALITY COLLABORATIVES
WHICH I BELIEVE ARE IN ALL 50
STATES ON DATA COLLECTION AND
IMPROVEMENT?
>>YES, THAT'S SOMETHING WE ARE
ALSO WORKING ON AS WELL.
SO THAT'S SOMETHING WE'RE TRYING
TO DO AS WELL.
>>I SEE DR. SILVER HAS RAISED
HIS HAND.
>>ANA WAS FIRST.
>>I KNOW, I'M SO SORRY.
ANA, YOU WANT TO GO FIRST?
>>YES, I CAN'T SEEM TO TURN MY
VIDEO ON.
I'M HERE REPRESENTING ELSA BRIEF
FAMILIES.
MY NAME IS ANA VICK.
JUST AS A PERSONAL EXPERIENCE TO
INTERJECT HERE, I DID PUT IN THE
CHAT AS WELL, WE DIDN'T GET A
CAUSE OF DEATH FOR OUR SON AND I
WAS VERY DISCOURAGED IN MANY
WAYS THAT I DIDN'T WANT TO GET
INTO BUT WE DID FIND OUT THROUGH
SIX YEARS LATER THAT IT WAS CORD
COMPRESSIONS.
SO FOR ME, IT FEELS LIKE THERE
ARE MANY CASES LIKE THIS, AND I
KNOW FOR A FACT, BECAUSE I SPEAK
TO PARENTS EVERY DAY.
SO HOW DO WE UPDATE DATA?
IS THERE ACTUALLY A WAY TO DO
THAT?
I WOULD LOVE FOR MY SON'S DEATH
TO BE PROPERLY RECORDED AND PART
OF RESEARCH, BUT NOBODY IS
ASKING ME FOR ANYTHING AT THIS
POINT.
AND I THINK IT WOULD BE VERY
HELPFUL, BECAUSE MANY OF US WHO
ARE FINDING A CAUSE, YOU KNOW,
WANT TO SEE CHANGE, WE WANT TO
SEE FAMILIES HAVE THEIR BABIES
HOME SAFELY.
SO I THINK THIS IS A GREAT
GROUP, AND I JUST WANT TO HEAR
WHAT YOUR GUYS' TAKE IS WHAT WE
CAN DO ON OUR END AS PARENTS,
BECAUSE YOU KNOW, WE DO WANT TO
SEE SOMETHING COME FROM THE LOSS
THAT WE EXPERIENCED.
>>ANA, I CAN SPEAK ON BEHALF OF
THE PANEL THAT HAS BEEN
ASSEMBLED.
THAT THE FIRST AND FOREMOST
CHARGE OF THIS GROUP IS TO
ADDRESS CURRENT BARRIERS TO
COLLECTING DATA ON STILLBIRTHS
IN THE U.S., STILLBIRTHS AND
FETAL DEATHS.
SO I DO FEEL WE HAVE AN
OBLIGATION TO ALL OF YOU WHO'VE
LOST BABIES TO RECTIFY THE
PROBLEMS WITH DATA COLLECTION.
AND I DO THINK THAT IN THE
UPCOMING MEETINGS IN NOVEMBER
AND DECEMBER, YOU'LL SEE A
GLIMPSE OF WHAT EXPERTS MIGHT BE
WILLING TO PROPOSE TO MAKE SURE
THAT THE DATA BEING COLLECTED
ACROSS THE COUNTRY IS
MEANINGFUL, LEADS TO PUBLIC
HEALTH CHANGES THAT ARE NEEDED
IN THIS AREA.
DR. SILL VE YOU HAVE YOUR HAND D
UP.
>>YOU BET.
SO THANKS FOR A GREAT
PRESENTATION, AND I THINK THAT
WAS REALLY, REALLY HELPFUL.
AND I HAVE A TWO-PART
QUESTION/COMMENT FOR THE GROUP.
ONE IS, THERE'S NO QUESTION THAT
WE NEED BETTER MECHANISMS TO GET
NEW AND UPDATED DATA INTO THE
FETAL DEATH CERTIFICATES AND
INTO THE VITAL RECORDS.
WE'VE DONE A LOT OF WORK WITH
OUR STATE HEALTH DEPARTMENT HERE
IN THA UTAH, AND I HAVE NO DOUBT
THAT ALL STATE HEALTH
DEPARTMENTS ARE VERY
ENTHUSIASTIC AND KEEN TO DO
THIS, BUT EVERYBODY IS LIMITED
BY RESOURCES.
AND THERE ARE MANY WAYS TO LINK
ELECTRONIC MEDICAL RECORDS AND
TO PUT NEW DATA IN, BUT IT'S
REALLY GOING TO REQUIRE
RESOURCES AND SO THAT THE
PARENTS ON THE CALL, CONTINUING
TO ADVOCATE AND CONTINUE TO
LOBBY TO GET THE RESOURCES TO
THE STATE HEALTH DEPARTMENTS SO
THAT WE HAVE THE ABILITY TO USE
MODERN TECHNOLOGY TO COLLECT
BETTER DATA AND TO UPDATE THE
FETAL DEATH CERTIFICATES WHEN
NEW DATA COMES IN AS PART OF THE
STILLBIRTH EVALUATION WOULD BE
TERRIFIC.
A SECOND THING, AND THIS MAY BE
SOMETHING YOU PLAN TO ADDRESS
LATER ON TODAY, SO IF YOU DO,
LET'S JUST DEFER IT BUT IF NOT,
IT MIGHT FIT HERE.
MANY OTHER COUNTRIES HAVE DONE
AUDITS, THE SAME WAY WE
CURRENTLY DO AUDITS FOR MATERNAL
DEATHS.
AND THOSE MATERNAL DEATH AUDITS
ARE TYPICALLY DONE THROUGH STATE
HEALTH DEPARTMENTS IN
COLLABORATION WITH VOLUNTEERS,
YOU KNOW, AS PHYSICIANS AND
INVOLVING THE FAMILIES.
THAT APPROACH HAS SEEMED TO BE
VERY BENEFICIAL AND SUCCESSFUL
IN OTHER COUNTRIES, BUT THE
BURDEN OF STILLBIRTHS WOULD BE
MUCH GREATER NUMERICALLY THAN
MATERNAL DEATHS, AND SO WE MAY
NOT BE ABLE TO COUNT ON
VOLUNTEERISM TO DO THAT, SO I'D
LOVE TO SEE THAT GET EITHER
ADDRESSED LATER OR AT LEAST
ADDED ON TO THIS CONCEPT OF
COLLECTING BETTER DATA.
>>TO BOB, WE'VE PUT ASIDE SOME
TIME AT THE END OF THE SESSION
TODAY FOR THE WORKING GROUP TO
START BRAINSTORMING AROUND WHAT
WE CAN DO TO REMOVE THE CURRENT
BARRIERS AROUND PROPER DATA
COLLECTION.
SO LET'S TALK MORE ABOUT
APPROACHES.
DR. DUDLEY?
AND THEN DR. RASMUSSEN.
>>MY QUESTION IS FOR ELIZABETH.
SO WHO COMPLETES THESE FORMS AT
THE INDIVIDUAL HOSPITALS?
>>IT CAN VARY BASED ON
HOSPITAL.
COULD BE A PHYSICIAN, IT COULD
BE THE NURSE, THE BIRTH
REGISTRATION SPECIALISTS WOULD
ALSO POSSIBLY FILL OUT SOME OF
THIS INFORMATION AS WELL.
IT JUST DEPENDS ON HOW THE
HOSPITAL IS SET UP.
>>OKAY.
AND DO THEY GET COMPENSATED IN
ANY WAY FOR DOING THIS?
DO YOU KNOW?
OR IS THAT AN INDIVIDUAL
HOSPITAL DECISION?
>>I AM NOT SURE ABOUT THAT.
>>OKAY.
AND DO ALL OF THEM GO THROUGH
THE ONLANE TRAININ ONLINE TRAINU
HAVE?
>>I THINK IT DEPENDS ON THE
HOSPITAL.
SOME HOSPITALS MAY HAVE THEIR --
WHOEVER FILLS OUT THESE FORMS
TAKE THIS TRAINING, BUT IT'S NOT
MANDATORY.
IT DEPENDS ON THE HOSPITAL.
>>OKAY.
ALL RIGHT.
THANKS.
APPRECIATE THAT.
>>MM-HMM.
>>AND MAYBE AN EXTENSION TO DR,
ELIZABETH, HOW IS THE QUALITY OF
DATA IN THESE FORMS EVALUATED?
>>SO WHEN WE -- SO WE HAVE
ANOTHER BRANCH THAT RECEIVES THE
DATA BEFORE WE DO.
AND THEY DO A LOT OF QUALITY
CONTROL, YOU KNOW, FOR EXAMPLE,
IF THEY SAW SOMETHING THAT WAS
VERY OUT OF RANGE, PERHAPS
MOTHER'S HEIGHT OR MOTHER'S
WEIGHT OR SOMETHING LIKE THAT,
THEY WOULD THEN GO BACK AND
QUERY THE STATE TO DOUBLE-CHECK
THIS AND MAKE SURE THAT WHAT
THEY RECORDED WAS ACCURATE.
THEY DO A LOT OF QUALITY CONTROL
IN THAT WAY.
AND THEN WHEN WE RECEIVE THE
DATA, THE REPRODUCTIVE
STATISTICS BRANCH, WE THEN ALSO
GO AND DO SOME QUALITY CONTROL
AS WELL.
WE DO A LOT OF LOOKING AT THE
DATA TO SEE, YOU KNOW, WHAT
ITEMS AND FOR WHAT STATES, MAYBE
ABOVE 50% UNKNOWNS, LOOKING AT
DISTRIBUTIONS.
SO WE DO TRY TO TAKE A LOOK AT
AS MUCH AS WE CAN IN TERMS OF
QUALITY CONTROL.
>>GOT IT.
OKAY.
THANK YOU, DR. GREGORY.
DR. SONJA RASMUSSEN.
>>YEAH, I DON'T THINK I'LL BE
ABLE TO PUT MY VIDEO ON, BUT IT
SEEMS LIKE MAYBE JUST BASED ON
SOME OF THE PARENTS' QUESTIONS,
THAT SOME OF THE ISSUES IS THAT
WE -- IT SEEMS LIKE SOME OF THE
ISSUES MAY BE THAT THE CAUSE
ISN'T KNOWN BECAUSE THE
EVALUATION TO FIGURE OUT THE
CAUSE WASN'T DONE.
ARE THERE STUDIES THAT LOOK AT
HOW OFTEN THE EVALUATION THAT'S
BEEN RECOMMENDED BY ACOG IS
DONE?
AND IS THERE A WAY TO ENCOURAGE
PAYORS TO PAY FOR AUTOPSIES AND
OTHER STUDIES TO UNDERSTAND THE
CAUSE?
I KNOW AS GENETICIST, OFTENTIMES
THE STUDIES CAN'T BE DONE
WITHOUT PARENTS HAVING TO PAY
FOR IT OUT OF POCKET, WHICH SOME
OF OUR GENETICS -- ARE VERY
EXPENSIVE.
SO TRYING TO FIND A WAY TO GET
PAYORS TO PAY FOR THAT WOULD
REALLY HELP TO UNDERSTAND WHAT
CAUSES ARE.
>>DR. REDDY?
>>IN TERMS OF DR. RASMUSSEN'S
QUESTIONS, YOU KNOW, YEAH, IT
DOES VARY, EVEN JUST ORDERING OF
TESTS, AND AS YOU SAID,
INSURANCE COVERAGE DISSUADES
MANY PARENTS FROM HAVING AN
AUTOPSY, MICRO ARRAY TESTING
THAT COULD HELP FIND A CAUSE.
I WANTED TO ASK DR. GREGORY AND
THE CDC FOLKS ON THE CALL ABOUT
STILLBIRTH REGISTRY.
SO THE CDC HAS WONDERFUL BIRTH
DEFECTS REGISTRY FOR
METROPOLITAN ATLANTA, WHERE THEY
DO ACTIVE SURVEILLANCE AND THEY
GO TO THE CHART TO REALLY
UNDERSTAND BIRTH DEFECTS FOR
METROPOLITAN ATLANTA.
I'M NOT SURE IF THE PROGRAM IS
STILL GOING ON, AND I KNOW YEARS
AGO THAT THEY ADDED STILLBIRTH,
SO THEY WERE DOING ACTIVE
SURVEILLANCE ON STILLBIRTH AND
ADDED TO THE CHART, THEY ADDED
IT TO THE BIRTH DEFECTS
REGISTRY.
DOES ANYBODY KNOW IF THAT'S
BEING DONE ON THAT KIND OF
ACTIVE SURVEILLANCE GOING TO
CHARTS AND REALLY EVALUATING THE
CASES FOR A POPULATION, FOR A
PARTICULAR AREA TO FIND BY
GEOGRAPHIC AREA?
>>DR. BARFIELD?
>>I THINK DR. COHEN MAY BE ON
THE CALL, BUT SHE MAY NOT HAVE
BEEN ABLE TO STAY FOR THE WHOLE
TIME.
BUT ESSENTIALLY THERE WERE SOME
STUDIES -- THERE WAS ONE STUDY
SPECIFICALLY IN IOWA WHERE THERE
WAS SOME WORK DONE TO TRY TO DO
SOME LINKAGES WITH BIRTH DEFECTS
AND STILLBIRTH REGISTRIES, AND
THIS, AGAIN, WAS THROUGH THE
DIVISION OF BIRTH DEFECTS AND
INFANT DISORDERS.
AND CURRENTLY IN TERMS OF SOME
OF THE WORK WITH METROPOLITAN
ATLANTA, I THINK THAT'S THE
CASE, BUT I DON'T THINK IT IS AS
COMPREHENSIVE, PER SE.
AND SOME STATE DO INCLUDE
STILLBIRTH IN THEIR BIRTH
DEFECTS REGISTRIES.
SO I JUST THINK THAT IT MAY NOT
BE AS COMPREHENSIVE.
BUT I THINK THERE WAS ANOTHER
IMPORTANT POINT THAT WAS RAISED,
AND I THINK WE REALLY HAVE TO
THINK ABOUT THESE BROADER
BARRIERS TO DATA.
ONE -- SO I'M A NEONATOLOGIST BY
TRAINING, SO IN THE DELIVERY
ROOM A LOT, AND I THINK PART OF
THE CHALLENGE IS THAT, YOU KNOW,
THESE EVENTS, ALBEIT INCREDIBLY
TRAGIC, PROBABLY DON'T GET THE
ATTENTION THAT THEY DESERVE AT
THE TIME OF THE ACTUAL EVENT IN
TERMS OF DATA COLLECTION AND
FURTHER INFORMATION.
I THINK THE OTHER THING, TOO,
THAT'S REALLY AN ISSUE IS THE
TRAINING OF PLACENTAL
PATHOLOGISTS, WHICH I THINK WAS
MENTIONED BY ONE OF THE PARENTS,
AND HOW THAT IS READILY
AVAILABLE OR NOT AVAILABLE.
>>PLEASE MUTE YOURSELF IF
YOU'RE NOT SPEAKING.
THANK YOU.
>>WANDA, I'M SORRY, A LITTLE
BIT OF WHAT YOU WERE SAYING
TOWARDS THE END GOT MUFFLED WITH
THE VOICES IN THE BACKGROUND.
LET ME ADD TO THE QUESTION
DR. REDDY RAISED.
IF THE STILLBIRTH REGISTRY IS NO
LONGER ACTIVE AT THE CDC RIGHT
NOW, WHAT WOULD IT TAKE TO
ACTUALLY INITIATE ONE?
BECAUSE REALLY, THERE NEEDS TO
BE ONE SOURCE OF TRUTH FOR THIS
TRAGEDY THAT HAPPENS TO MANY
FAMILIES, BUT ULTIMATELY THAT
GUIDES FUTURE RESEARCH AND ALSO
PREVENTIVE MEASURES.
>>YES, I THINK THERE HAS BEEN
SOME PRIOR WORK IN THIS AREA AND
THAT IT REALLY -- YOU KNOW, THAT
IT WOULD BE IMPORTANT BUT IT
WOULD REQUIRE THE RESOURCES IN
TERMS OF DATA COLLECTION AND,
YOU KNOW, ADDITIONAL INFORMATION
THAT CURRENTLY IS NOT BEING
RESOURCED.
THIS DATA COLLECTION IS, AS YOU
KNOW, FAIRLY LABOR INTENSIVE IN
TERMS OF CHART REVIEW,
EXAMINATION, GATHERING
INFORMATION.
SIMILARLY TO MATERNAL MORTALITY
REVIEW, IT MAY BE THEN IN SOME
WAYS BECAUSE MATERNAL MORTALITY
IS LESS FREQUENT, THAT THE
AMOUNT OF TIME THAT IT TAKES MAY
BE DIFFERENT BUT FOR THE REVIEW
OF STILL PI STILLBIRTHS IN A RE,
AGAIN, IT WOULD TAKE A LOT OF
INPUT, AND THE BIRTH DEFECTS
CENTER HAS A LOT OF EXPERIENCE
IN THAT AREA.
>>YEAH, THAT WAS MY ONLY POINT,
THAT YOU KNOW, WE'RE DOING BIRTH
DEFECTS REGISTRY AND DOING THAT
KIND OF THOROUGH EVALUATION.
SO I THINK IN TERMS OF GETTING
DETAILED INFORMATION,
EVALUATIONS, TALKING TO
FAMILIES, IT CAN'T BE
NATIONWIDE, YOU'RE RIGHT, BUT IF
YOU HAVE FOCUSED AREAS WHERE
THERE'S A HIGH RATE OF
STILLBIRTH, YOU KNOW, I THINK
THAT KIND OF DETAILED DATA IS
NEEDED TO GET AT THE RACIAL
DISPARITY AND STILLBIRTH AND SO
SIMILAR -- SO THAT'S WHAT I WAS
ASKING, REALLY, IS THAT -- DOES
THAT HAVE A ROLE.
BUT YOU'RE RIGHT, YOU CAN'T DO
IT FOR THE ENTIRE COUNTRY, BUT
MAYBE FOCUSED POPULATIONS.
>>RIGHT, AND I THINK DR. COHEN
IS RAISING HER HAND SO SHE CAN
CERTAINLY TALK MORE ABOUT THIS.
>>YEAH, I THINK EVERYTHING YOU
GUYS ARE SAYING ARE CORRECT.
YOU COULD DO EITHER -- AND WE
ARE STARTING TO DO A BIRTH
DEFECT -- INCLUDE BIRTH DEFECTS
IN TWO OF OUR SITES THAT ARE
DOING THE -- SORRY, TWO SITES
WE'RE INCLUDING STILLBIRTH OF
THE SITES THAT ARE DOING CASE
CONTROL RISK FACTOR STUDIES FOR
BIRTH DEFECTS, BUT THE CURRENT
FUNDING THAT WE HAVE IS REALLY
FRANKLY MINUSCULE COMPARED TO --
AND WE DON'T EVEN REALLY HAVE A
LOT TO BIRTH DEFECTS RISK FACTOR
STUDIES.
WE COULD BUILD THAT INTO WHAT
ALREADY EXISTS, BUT WE WOULD
NEED SUBSTANTIAL AND HONESTLY IT
WOULD BE SUBSTANTIAL RESOURCES
AND IT WOULD TAKE A FEW YEARS TO
BE ABLE TO INCORPORATE THAT
ENTIRELY TO WHAT WE'RE CURRENTLY
DOING IN BIRTH DEERVEGHTS.
BIRTH DEFECTS.
>>AMANDA, I'M SORRY, WANDA, GO
AHEAD, PLEASE.
I HAVE JUST A QUICK COMMENT
REGARDING THE SIZE OF THE
PROBLEM.
I WOULD THINK, AMANDA, THAT
COMPARED TO THE SIZE OF THE
BIRTH DEFECTS REGISTRY, THE
STILLBIRTH REGISTRY WOULD STILL
BE RELATIVELY SMALL.
>>I'D HAVE TO THINK ABOUT IT.
I'D HAVE TO DO THE NUMBERS AND I
CAN CERTAINLY COME BACK AT A
FUTURE MEETING WITH SOME MORE
INFORMATION.
I KNOW THAT PEOPLE ON MY TEAM
HAVE LOOKED AT THIS MORE
CLOSELY.
BUT -- AND SONJA MAY HAVE SOME
EXPERIENCE FROM PREVIOUSLY, BUT
IT WOULD BE, ESPECIALLY IF YOU
DID -- YOU WOULDN'T BE ABLE
TO -- THE NUMBERS WOULD STILL BE
SMALL, BUT YOU COULD DO SOME
RISK FACTOR STUDIES ASSOCIATED
WITH THOSE NUMBERS THAT COULD
DEMONSTRATE SOME OF THE
POTENTIAL -- COULD IDENTIFY SOME
POTENTIAL PREVENTABLE CAUSES.
AND THAT'S BECAUSE WE DO ENROLL
CONTROLS WITH EACH OF THOSE
BIRTH DEFECTS CASES.
IT SORT OF POWERS US TO
UNDERSTAND A LITTLE BIT MORE
THAN JUST BY ENROLLING THE BIRTH
DEFECT CASES ALONE.
>>GOT IT.
DR. BAR FIELD AND DR. SILVER.
>>YES, JUST ANOTHER AREA THAT'S
POTENTIALLY PROMISING THAT
DR. SILVER MAY BE AWARE OF IS
THE OPPORTUNITY TO USE THE
PREGNANCY RISK ASSESSMENT
MONITORING SYSTEM.
OR PRAMS FOR STILLBIRTH
SURVEILLANCE.
WE ACTUALLY DO HAVE A SITE IN
UTAH CURRENTLY THAT IS LOOKING
AT STILLBIRTH.
SO THAT MAY BE A POSSIBILITY AS
WELL, PARTICULARLY IN GETTING
SOME OF THE FACTORS THAT OTHERS
HAVE MENTIONED AROUND SOCIAL
DETERMINANTS OF HEALTH, AND
OTHER FACTORS.
AGAIN, AS A COMPLEMENT TO THE
CURRENT AREAS.
AND WE'VE ALSO DONE SOME
EXPLORATION ON THE COMFORT THAT
WOMEN MAY HAVE IN ASKING ABOUT
THEIR RECENT STILLBIRTH, AND
WOMEN ARE WILLING TO TALK ABOUT
IT.
>>THANK YOU, DR. BARFIELD.
DR. SILVER?
BOB, YOU'RE STILL -- IT LOOKS
LIKE YOU'RE STILL MUTED.
>>SORRY.
THANK YOU, DR. BARFIELD.
AND WE DO HAVE THIS SOARS
PROGRAM TO GATHER EPIDEMIOLOGIC
DATA AND IT'S A RELATIVELY
INEXPENSIVE APPROACH.
WE'RE OFFERING EVERYBODY WHO
PARTICIPATE IN THE SOARS STUDY
AN IN-PERSON CONSULTATION AT NO
CHARGE WHERE WE CAN DIG DEEPER,
AND THAT'S BEEN A REALLY
VALUABLE THING.
BUT AGAIN, THE PROBLEM WITH IT
IS IT'S SIMPLY UNDERFUNDED.
THERE'S NOT ENOUGH MONEY FOR THE
STATE HEALTH DEPARTMENTS AND I
RELY ON THE GOODWILL OF DOCS TO
DO IT SO WE'RE NOT ABLE TO DO
ALL OF THE CASES, WE CAN ONLY DO
A SUBSET OF THE CASES.
THE OTHER THING I WANTED TO
THROW OUT THERE IS THAT IN OTHER
COUNTRIES WITH SIMILAR
RESOURCES, WE ARE ABLE TO DO
PERINATAL AUDITS ON 100% OF
STILLBIRTHS.
THERE'S NO QUESTION THAT IT'S
VERY CHALLENGING TO GO FROM
WHERE WE ARE RIGHT NOW TO 100%,
AND OUR COUNTRY IS DIFFERENT AND
COMPLICATED.
BUT I THINK WE SHOULD AT LEAST
ASPIRE TO IT.
AND SO AS WE WORK THROUGH THIS,
MAYBE WE CAN SAY THIS IS
REALISTIC FOR US TO DO IN THE
NEXT YEAR OR TWO, BUT THIS IS
WHERE WE REALLY WANT TO GO AND
THIS IS HOW MUCH RESOURCE IT'S
GOING TO TAKE.
BUT I'D SURE LIKE TO SEE US
EVENTUALLY GET TO A PLACE WHERE
WE CAN DO 100% OF THESE CASES
AND GIVE EACH ONE OF THESE CASES
THE EVALUATION THAT WOULD BE
IDEAL.
>>GREAT.
THAT'S SUCH A RICH CONVERSATION.
GREAT.
THANK YOU.
OTHER QUESTIONS, COMMENTS?
MONICA, I WANT TO RETURN THIS
BACK TO YOU.
DO YOU HAVE ANY OTHER
PRESENTATIONS BEFORE WE MOVE TO
THE NEXT SESSION?
>>NO, WE DON'T, DR. JAIN.
WE ARE JUST GOING TO TRY TO WRAP
UP OUR DISCUSSION AND TRY TO GO
TO OUR ACTION ITEM.
>>GREAT.
HOW ABOUT WE GIVE OURSELVES
MAYBE 10 OR 11 MORE MINUTES AND
THEN WE CAN MOVE INTO OUR
WRAP-UP SESSION?
>>SOUNDS GREAT.
>>OKAY.
ALL RIGHT.
SO EMILY?
>>THANK YOU FOR THE
OPPORTUNITY.
I JUST HAVE ONE MORE QUESTION AS
WE WERE TALKING ABOUT FUNDING
AND WHAT NEEDS TO BE STUDIED IN
DATA COLLECTION, AND I THOUGHT I
WOULD JUST MAYBE PLANT THE SEED
AT THE IDEA OF A STILLBIRTH
PREVENTION BUNDLE IN THIS
COUNTRY.
THIS IS WHAT WE'RE SEEING
PROGRESS WITH IN OTHER
COUNTRIES.
THE U.K., AUSTRALIA AND OTHER
PLACES.
THE IDEA OF A BUNDLE.
JUST LIKE WE'RE DOING WITH
MATERNAL MORTALITY IN THIS
COUNTRY.
AND AS SOME OF OUR ORGANIZATIONS
HAVE BEEN STUDYING WHAT WOULD GO
INTO A BUNDLE, ESPECIALLY VERY
SPECIFICALLY TO THE UNITED
STATES, AND I JUST WANTED TO
PLANT THE SEED OF THE IDEA OF A
BUNDLE, IF WE'RE LOOKING AT THIS
HOLISTICALLY DATA COLLECTION,
PREVENTION, SEVERAL EFFORTS THAT
COULD COMBINE INTO ONE TO HELP
PREVENT STILLBIRTH IN THIS
COUNTRY.
WE'VE DONE IT FOR MATERNAL
MORTALITY, IT'S HELPING, AND I
JUST -- I FEEL LIKE IT COULD
HELP STILLBIRTH AS WELL.
THANK YOU FOR THE TIME.
>>THANK YOU, EMILY.
THIS IS SO HELPFUL.
I THINK ALL THESE COMMENTS THAT
YOU ALL ARE MAKING IN THE
ENGAGEMENT IS GOING TO HELP THE
WORKING GROUP WITH ITS CHARGE.
LET'S SEE.
DR. BIANCHI, DO YOU HAVE ANY
OTHER THOUGHTS OR COMMENTS?
>>NO, I THINK THAT CLEARLY
BETTER DATA ARE NEEDED, AND I
REALLY APPRECIATE DR. GREGORY'S
PRESENTATION AND SOME OF THE
OTHER EXAMPLES THAT HAVE BEEN
GIVEN.
SOME OF THE CLINICAL
RECOMMENDATIONS, THAT'S NOT THE
FOCUS PARTICULARLY OF THIS
GROUP.
I MEAN, BETTER DATA ARE GOING TO
INFORM THE RESEARCH QUESTIONS
THAT WILL THEN GENERATE THE
EVIDENCE THAT THEN CAN BE USED
BY PROFESSIONAL SOCIETIES AND
PROVIDERS TO CHANGE PRACTICE.
SO I THINK IT'S IMPORTANT FOR
EVERYONE TO UNDERSTAND KIND OF
THAT CONTINUUM, JUST SO WE DON'T
CREATE EXPECTATIONS THAT WE
CAN'T DELIVER.
THE NIH IS A RESEARCH
ORGANIZATION.
I DON'T MEAN THAT TO SOUND COLD
IN ANY WAY.
I AM A CLINICIAN, AT LEAST A
FORMER CLINICIAN, AND
UNFORTUNATELY HAVE BEEN IN THE
DELIVERY ROOM FOR DELIVERIES OF
BABIES THAT WERE VERY WANTED BUT
WERE NOT BORN ALIVE.
SO YOU KNOW, I THINK THAT'S MY
MAIN TAKEAWAY FROM THESE RECENT
PRESENTATIONS, IS THAT -- AND
THEY'RE VERY HELPFUL TO SEE WHAT
WE ALREADY KNOW BUT WHERE THE
GAPS ARE.
AND THINKING ABOUT HOW DO YOU
GET TO THE VARIETY OF PEOPLE WHO
ARE FILLING OUT THESE FORMS.
I MEAN, IF IT WERE JUST
PHYSICIANS, YOU MIGHT HAVE A WAY
TO LINK TO ANNUAL LICENSE
RENEWAL, FOR EXAMPLE, BUT IT NOT
JUST PHYSICIANS.
SO HOW DO YOU MOTIVATE THE
REGISTRAR IN THE HOSPITAL WHO'S
TRYING TO JUST FILL OUT THE
FORMS AND KEEP TRACK OF
EVERYTHING THAT HAPPENED.
SO I THINK IT'S BEEN A VERY RICH
DISCUSSION, AND WE'RE TAKING
NOTES OF EVERYTHING.
>>SO DIANA, THE REPORT THAT IS
GENERATED FROM THIS ENGAGEMENT,
IT GOES BACK TO CONVENTIONAL
LEADERS, RIGHT?
AND WOULD THERE BE AN
OPPORTUNITY FOR AN ASK TO SET UP
SOME OF THE -- WHETHER IT'S A
REGISTRY OR IT'S A BUNDLE, A
PREVENTION BUNDLE THAT COULD BE
IMPLEMENTED FROM A PUBLIC HEALTH
STANDPOINT OR FURTHER ANALYSIS
OF THE INTERVENTIONS THAT COULD
BE DONE?
>>SO AGAIN, OUR MAIN MISSION,
ONE OF THE REASONS WHY THIS WAS
ASSIGNED TO NIH IS TO DEVELOP A
RESEARCH AGENDA.
SO REGISTRY COULD BE PART OF
ACQUIRING DATA, WHICH WILL THEN
INFORM THE RESEARCH AGENDA.
WITH REGARD TO THE BUNDLES,
THAT'S NOT REALLY IN OUR
PURVIEW.
I DON'T WANT TO IGNORE IT.
WE MIGHT BE ABLE TO MENTION IT,
BUT WE ARE NOT GOING TO BE ABLE
TO CHANGE THAT NEEDLE.
THAT'S NOT OUR PURVIEW.
THERE ARE OTHER ASPECTS OF THE
GOVERNMENT THAT MIGHT HAVE THE
ABILITY TO DO THAT, AND WE CAN
CERTAINLY COMMUNICATE WITH THEM.
BUT I THINK IT'S GOING TO -- WE
COULD BE MOST HELPFUL TO ALL OF
YOU IF WE STAY FOCUSED ON WHAT
DO WE NEED TO MAKE SURE WE HAVE
ACCURATE DATA.
AND IT'S ABSOLUTELY FAIR TO SAY
HOW CAN WE GET THE DATA WHEN
PARENTS ARE NOT GIVEN THE
OPPORTUNITY TO HAVE THE FULL
INVESTIGATION DONE ON THEIR MUCH
WANTED LOST BABY.
AND I THINK WE CAN INCLUDE THAT
IN THE REPORT.
I DON'T KNOW IF ANYBODY ELSE
WANTS TO ADD ANYTHING.
>>DR. REDDY, ANY PARTING
THOUGHTS FROM YOU?
>>ON DR. BIANCHI'S LAST POINT,
THE AMERICAN COLLEGE OF OB-GYN
IN 2020 CAME UP WITH A
COMPREHENSIVE GUIDELINE ON
MANAGEMENT AND EVALUATION FOR
STILLBIRTH, AND YOU KNOW, IT HAS
A CHART, IT SAYS THESE ARE THE
TESTS YOU NEED TO DO, IT GOES
THROUGH THE EVIDENCE, IT GOES
THROUGH THE RISK FACTORS.
SO YEAH, I THINK THE EMPHASIS ON
HOW DO WE GET HOSPITALS AND
PROVIDERS TO DO THAT BASIC
EVALUATION, BECAUSE WE DO, WE
HAVE TO BETTER UNDERSTAND THE
CAUSES SO WE CAN THEN PREVENT
STILLBIRTHS.
THERE IS A QUESTION ABOUT
STILLBIRTH PREVENTION.
IT DOES TALK -- YEAH, IT DOESN'T
DIRECTLY TALK ABOUT STILLBIRTH
PREVENTION, IT TALKS ABOUT THE
RISK FACTORS ASSOCIATED WITH
STILLBIRTH PREVENTION.
BUT YEAH, I THINK RESEARCH ON
SOME OF THE ITEMS MENTIONED
ABOUT ULTRASOUNDS, ESSENTIAL
FUNCTION, INFECTION, ALL OF
THESE CAUSES, BECAUSE WE KNOW
THE BASICS BUT WE DON'T KNOW --
WE HAVE -- THERE ARE MORE CAUSES
IN THOSE CATEGORIES THAT WE
DON'T KNOW ABOUT, BETTER
EVALUATIONS.
>>WELL, HALF OF THE BIRTHS IN
THIS COUNTRY HAVE INSURANCE
RELATED TO STATE MEDICAID
PROGRAMS, SO THAT MIGHT BE ONE,
YOU KNOW, WAY TO APPROACH THIS
TO SAY, YOU KNOW, I TOTALLY
AGREE, IT'S UNFAIR TO HAVE THE
PARENTS BE RESPONSIBLE FOR THE
FINANCIAL COSTS THAT WOULD BE
INCURRED BY HAVING AN AUTOPSY,
FOR EXAMPLE.
SO MAYBE ONE WAY IS TO WORK WITH
CMS TO SAY WHAT CAN THEY DO,
WHAT CAN THEY COVER THAT WOULD
THEN AT LEAST BE ABLE TO PROVIDE
SOME INFORMATION FOR EVERY WOMAN
WHO HAS INSURANCE THROUGH
MEDICAID.
GLL GOT IT.
>>GOT IT.
WITH THAT, THANK YOU,
DR. BIANCHI.
I WANTED TO THANK ALL OF YOU FOR
YOUR ENGAGEMENT TODAY ON BEHALF
OF DR. REDDY AND MYSELF,
PARTICULARLY THANKS TO
DR. NATASHA WILLIAMS AND
DR. MONICA LONGO FOR HAVING
ARRANGED THE SESSIONS, OUR
SPEAKERS, DR. ELIZABETH GREGORY
AND DR. SARAH.
VERY IMPORTANT PRESENTATIONS TO
SET THE STAGE FOR WHAT'S TO
COME.
SO WITH THAT, I WOULD LOVE FOR
OUR WORKING GROUP MEMBERS AND
THE NICHD STAFF TO STAY ON, SO
THAT WE CAN WRAP UP THIS
DISCUSSION.
AND COMPLETE OUR
PLANNING FOR THE NEXT MEETING.
>>THANK YOU, DR. JAIN.
-- ABOUT THE ITEMS THAT WE NEED
TO ACHIEVE THE ACTION ITEMS,
SO -- ANA, DO YOU STILL WANT TO
SAY SOMETHING?
I'M SORRY.
>>I JUST WANT TO THANK ALL OF
YOU FOR YOUR TIME ON THIS, AND I
KNOW YOU LOOK AT IT FROM A VERY
DIFFERENT LENS BUT NOT
EXPERIENCING A LOSS.
I JUST WANT TO SAY WHEN YOU LOSE
A BABY AND THEN YOU START TO BE
TALKED TO ABOUT DATA AND
RESEARCH, IT REALLY -- IT'S HARD
TO HEAR AND IT'S HARD FOR YOU TO
EVEN, YOU KNOW, COMPREHEND, YOUR
BABY JUST DIED, AND THEY WANT TO
GO THROUGH AUTOPSY AND THINGS
LIKE THAT, AND I THINK IT'S VERY
IMPORTANT, THE PERSON DOING IT
IS NOT INVOLVED IN THE LOSS,
ESPECIALLY IF IT WENT A WAY THAT
YOU DON'T FEEL LIKE THEY DID THE
BEST CARE.
THAT'S WHAT HAPPENED IN MY
SITUATION.
THEY CAME TO US AFTER I WAS
HOLDING MY DEAD BABY AND TELLING
ME, NOW DO YOU WANT AN AUTOPSY
AND YOU MAY NOT FIND ANYTHING
FROM THIS AND A LOT OF TIMES
PARENTS ARE UNHAPPY THAT THEY
DID IT BECAUSE, YOU KNOW, YOUR
BABY WILL LOOK DIFFERENT AFTER
AND YOU MIGHT HAVE TO PAY FOR IT
AND IT WAS VERY DISCOURAGED.
SO OF COURSE WE SAID NO.
AND THAT'S A REGRET I HAVE IN MY
LIFE.
AND THEN LATER, THANK GOD I DID
GET DR. CLE NENT MENTKOWSKI TO
DO RESEARCH SIX YEARS LATER, SO
I DO KNOW IT'S POSSIBLE TO FIND
ANSWERS LATER BUT IT ALSO IS
VERY SAD THAT IT TOOK ME SIX
YEARS OF THIS HEAVY GRIEF OF NOT
KNOWING CAUSE AND THINKING IT
MIGHT HAVE BEEN SOMETHING I DID.
AND I DON'T WANT ANYONE ELSE TO
LIVE WITH THAT.
SO IF THERE'S ANY WAY YOU CAN
STANDARDIZE -- LIKE MAKE IT
EQUITABLE, MAKE SURE THAT EVERY
PARENT GET JUST A FORM, IT COULD
BE WRITTEN OUT IN A WAY THAT
SAYS WE KNOW WHAT YOU'RE GOING
THROUGH AND THIS IS HORRIBLE BUT
YOU'RE GOING TO WANT TO KNOW,
YOU'RE GOING TO WANT THE ANSWER.
SO IF WE CAN HELP WITH ANY OF
THAT, WE KNOW THE PLACE THEY'RE
AT WHEN THEY'RE BEING ASKED
THESE QUESTIONS, AND DOCTORS
DON'T ALWAYS HAVE OUR BACK.
AND WE HAVE TO DO THAT FOR
EVERYBODY, NOT JUST THE PEOPLE
WHO CAN AFFORD IT.
AND THANKFULLY I HAD THE
RESOURCE AND I WAS CONNECTED
WITH DR. CLEMENT RECENTLY SO I
HAD THE RIGHT PERSON TO HELP ME
AND MY FAMILY, AND NOW I HAVE A
VOICE AND ADVOCATE FOR OTHERS,
SO THEY CAN PREVENT A LOSS AND
WE DO KNOW THERE'S VERY MANY
SIMILARITIES IN ALL OUR STORIES,
AND SO WE WANT TO HELP IN ANY
WAY YOU GUYS CAN USE US, SO
PLEASE LET US KNOW.
>>THANK YOU SO MUCH, ANA.
I KNOW HOW HARD THIS IS.
AND I ALSO WANT YOU TO KNOW THAT
THE CONGRESSIONAL MANDATE THAT
WAS DELIVERED TO THIS WORKING
GROUP INCLUDES LOOKING AT
PSYCHOLOGICAL IMPACT OF
STILLBIRTH AND TREATMENT OF
MOTHERS IN PARTICULAR FOLLOWING
STILLBIRTH.
SO THIS IS AN IMPORTANT AREA WE
WOULD LIKE TO CONTINUE TO
EXPLORE, AS MUCH AS WE WANT TO
UNDERSTAND WHY CERTAIN BABIES
DON'T MAKE TO FULL TERM, LIVE
BIRTH, CREATING THIS LIFELONG
REGRET IN THE FAMILY.
I, FOR ONE, CAN TELL YOU, ANA,
THAT WE HAD TWO CHILDREN, AS A
NEONAY TOLL NEONATOLOGIST, I DOW
WE DIDN'T EVEN THINK ABOUT THESE
TYPE OF TRAGIC EVENTS AT THAT
TIME.
WE WERE JUST YOUNG, WE WERE
BUSY.
BUT WE NOW HAVE TWO
GRANDCHILDREN, AND I CAN'T TELL
YOU HOW MANY SLEEPLESS NIGHTS I
HAVE SPENT LISTENING TO OUR
DAUGHTERS, WHEN THEY WENT
THROUGH HIGH RISK HIGH RISK PRE,
WAKING UP IN THE MIDDLE OF THE
NIGHT HOPING THAT EVERYTHING IS
OKAY.
SO I JUST WANT YOU TO KNOW THAT
WE ARE WITH YOU, THAT THIS IS
NOT SOMETHING THAT WE'RE
TREATING JUST AS SCIENTISTS.
WE HAVE REAL SKIN IN THIS, AND
WE'RE EQUALLY CONCERNED ABOUT
THIS, GIVEN THAT OUR FUTURE
GENERATION AND GRANDCHILDREN ARE
AT STAKE.
SO THANK YOU SO MUCH.