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THANK YOU SO MUCH FOR JOINING US

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TODAY.

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I'M DR. DIANA BIANCHI, DIRECTOR

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OF THE NICHD, CELEBRATING OUR

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60TH ANNIVERSARY THIS YEAR.

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THIS IS THE FIRST MEETING OF THE

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STILLBIRTH WORKING GROUP OF

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NICHD'S NATIONAL ADVISORY

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COUNCIL.

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I HAVE TO APOLOGIZE, I'M GETTING

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OVER A COLD.

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SO I MIGHT NEED TO CLEAR MY

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THROAT OCCASIONALLY.

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I'M JOINED TODAY BY THE TWO

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WONDERFUL CO-CHAIRS OF THIS

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WORKING GROUP.

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THE PEDIATRICIAN IN CHIEF AND

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THE CHAIR OF THE DEPARTMENT OF

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PEDIATRICS AT EMORY UNIVERSITY,

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AND AT CHILDREN'S HEALTHCARE

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ATLANTA.

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AND DR. UMA REDDY, VICE CHAIR OF

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RESEARCH AND PROFESSOR OF

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OBSTETRICS AND GYNECOLOGY IN THE

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DEPARTMENT OF OBSTETRICS AND

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GYNECOLOGY AT COLUMBIA

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UNIVERSITY.

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SINCE THE 1940s, IMPROVEMENTS

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IN MATERNITY CARE HAVE LED TO

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DRAMATIC REDUCTION IN THE

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OCCURRENCE OF STILLBIRTH.

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HOWEVER, MORE RECENTLY THAT

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DECLINE HAS SLOWED OR HALTED.

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IN 2020, APPROXIMATELY 21,000

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STILLBIRTHS ARE REPORTED IN THE

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UNITED STATES, AND EACH ONE OF

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THEM REPRESENTS A DEVASTATING

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LOSS FOR THE PARENT OR THE

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FAMILY.

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THE STILLBIRTH WORKING GROUP

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WILL ADDRESS THESE CRITICAL

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NEEDS BY FOCUSING ON THE CURRENT

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BARRIERS TO COLLECTING DATA ON

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STILLBIRTHS THROUGHOUT THE

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UNITED STATES.

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AS WELL AS COMMUNITIES AT HIGHER

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RISK OF STILLBIRTH, THE

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PSYCHOLOGICAL IMPACT AND

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TREATMENT FOR MOTHERS FOLLOWING

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STILLBIRTH, AND THE KNOWN RISK

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FACTORS FOR STILLBIRTH.

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WE'LL HEAR MORE ABOUT THE

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CONTEXT AND DETAILS OF THE

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GROUP'S CHARGE FROM DR. NATASHA

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WILLIAMS LATER IN THE AGENDA.

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STILLBIRTH RESEARCH FALLS WITHIN

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NICHD'S MISSION TO LEAD RESEARCH

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AND TRAINING TO UNDERSTAND HUMAN

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DEVELOPMENT, IMPROVE

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REPRODUCTIVE HEALTH, ENHANCE THE

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LIVES OF CHILDREN AND

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ADOLESCENTS, AND OPTIMIZE THE

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ABILITIES FOR ALL.

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IN PARTICULAR, RESEARCH TO

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BETTER UNDERSTAND HUMAN

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DEVELOPMENT AND TO PROMOTE

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HEALTHY PREGNANCIES FALLS WITHIN

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THE RESEARCH THEMES OF OUR MOST

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RECENT 2020 STRATEGIC PLAN.

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HOWEVER, UNDERSTANDING MORE

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ABOUT STILLBIRTH REPRESENTS A

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DIFFICULT CHALLENGE.

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THE CAUSES OF STILLBIRTH ARE

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VARIED AND COMPLEX, WHILE

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UNIFORMLY TRAGIC, STILLBIRTH IS

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A RARE EVENT, MAKING ANALYSIS

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DIFFICULT IF A STUDY LACKS A

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LARGE NUMBER OF PARTICIPANTS.

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IN ADDITION, EACH STATE MAY

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COLLECT DATA DIFFERENTLY, WHICH

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CAN COMPLICATE COMPARISONS

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ACROSS THE UNITED STATES.

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NICHD HAS MADE SOME PROGRESS IN

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STILLBIRTH RESEARCH, BUT MORE

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CAN BE DONE.

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FOR EXAMPLE, NICHD SUPPORTED THE

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STILLBIRTH COLLABORATIVE

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RESEARCH NETWORK.

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THIS STUDY RECRUITED

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PARTICIPANTS FROM 59 URBAN AND

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RURAL HOSPITALS IN FIVE

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GEOGRAPHIC AREAS IN THE U.S.,

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AND THE RESULTS WERE ABLE TO

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CONFIRM A NUMBER OF SUSPECTED

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CAUSES OF STILLBIRTH, AND

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SUGGEST AVENUES FOR FUTURE

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FOCUSED PROJECTS.

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ALTHOUGH FUNDING SUPPORT ENDED

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SEVERAL YEARS AGO, DATA FROM THE

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00:03:35,200 --> 00:03:36,720
STILLBIRTH NETWORK HAVE BEEN

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SHARED WITH THE SCIENTIFIC

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COMMUNITY THROUGH NICHD'S DATA

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AND SPECIMEN HUB, OTHERWISE

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KNOWN AS DASH.

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NETWORK DATA HAVE BEEN USED

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FREQUENTLY OVER THE PAST DECADE

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TO ANALYZE THE CAUSES OF

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STILLBIRTH AND SPECIMENS FROM

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THE STUDY HAVE BEEN ANALYZED

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USING TECHNOLOGIES NOT AVAILABLE

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PREVIOUSLY.

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THE MOST RECENT PUBLICATION

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USING THESE DATA APPEARED LAST

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MONTH, AND AT LEAST FOUR

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SCIENTIFIC ARTICLES USING THESE

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DATA WERE PUBLISHED IN 2022

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ALONE.

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SIMILARLY, OTHER NICHD NETWORKS

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AND COHORT STUDIES IN

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OBSTETRICS, FOR EXAMPLE, THE

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MATERNAL-FETAL MEDICINE UNIT'S

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NETWORK AND THE GLOBAL NETWORK

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FOR WOMEN'S AND CHILDREN'S

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HEALTH HAVE SUPPORTED STILLBIRTH

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RESEARCH ALONG WITH INVESTIGATOR

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INITIATED STUDIES.

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AND YOU'LL HEAR MORE ABOUT THE

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ANALYSIS IN THE PORTFOLIO LATER

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ON IN THE AGENDA.

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NICHD HAS ALSO SUPPORTED THE

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00:04:41,680 --> 00:04:43,640
HUMAN PLACENTA PROJECT, WHICH

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AIMED TO UNDERSTAND PLACENTAL

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DEVELOPMENT, FUNCTION, AND

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STRUCTURE THROUGHOUT ALL STAGES

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OF PREGNANCY.

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THE MAIN APPROACH WAS TO DEVELOP

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SAFE, EFFECTIVE WAYS TO ASSESS

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PLACENTAL HEALTH IN REALTIME.

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RESEARCH TO BETTER DISCERN HOW

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THE PLACENTA WORKS WILL HELP US

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TO UNDERSTAND STILLBIRTH

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PATHOPHYSIOLOGY AND MECHANISMS

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AND SERVE AS THE FOUNDATION TO

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INFORM FUTURE STILLBIRTH

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RESEARCH.

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WE AT NICHD APPRECIATE THIS

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OPPORTUNITY TO LOOK MORE CLOSELY

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AT THE LANDSCAPE OF STILLBIRTH

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RESEARCH, AND WE APPRECIATE THE

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PROFOUND, LONG-TERM CONSEQUENCES

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ON THE HEALTH OF THE PARENT AND

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THE FAMILY.

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AND WE AIM TO COLLECT WISDOM

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FROM THE GROUP TO INFORM A PATH

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FORWARD.

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I'D LIKE TO THANK THOSE WHO

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HELPED TO ORGANIZE THIS MEETING

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AND THOSE WHO ARE SUPPORTING

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THIS WORKING GROUP, AS WELL AS

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EACH ONE OF YOU, THE MEMBERS OF

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THE WORKING GROUP, FOR DEVOTING

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YOUR TIME TO THIS VERY IMPORTANT

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ENDEAVOR.

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AND NOW I'D LIKE TO TURN THINGS

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OVER TO DR. LUCKY JAIN TO LEAD

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THE INTRODUCTIONS.

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LUCKY?

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>>THANK YOU, DR. BIANCHI.

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GOOD AFTERNOON, EVERYONE.

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SO BEFORE I GET TO

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INTRODUCTIONS, DIANA, LET ME

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JUST SAY THAT THIS TOPIC OF

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STILLBIRTH IS SO IMPORTANT.

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AS A NEONATOLOGIST, I CAN TELL

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YOU THAT FAMILIES WHO HAVE HAD

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ONE STILLBIRTH, THE

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PSYCHOLOGICAL IMPACT OF THAT

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STILLBIRTH ON THAT MOTHER AND

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THE FAMILY IS SO PROFOUND.

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IT GOES BACK TO THE DAYS WHEN

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MRS. JACKIE KENNEDY HAD A

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STILLBIRTH, AND WE ALL KNOW FROM

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THAT OCCURRENCE HOW THE

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REPERCUSSIONS OR THE IMPACT OF

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THAT ONE SINGLE STILLBIRTH

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STAYED WITH MRS. KENNEDY FOR

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SUCH A LONG TIME.

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SONATA SHA OR MAHOGANY, CAN YOU

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SHARE WITH ME THE ROSTER OF THE

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MEMBERS WHO ARE ATTENDING?

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>>YES, DR. JAIN, I
EMAILED TO

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YOU AND AN UPDATE, I DO SEE THAT

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DR. SILVER IS ON THE CALL.

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I REMOVED HIM BUT I DO SEE THAT

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HE IS HERE AS WELL.

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>>PERFECT.

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OKAY.

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SO LET ME INTRODUCE THE MEMBERS

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OF THE WORKING GROUP THAT HAS

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BEEN PUT TOGETHER IN CONJUNCTION

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WITH THE NICHD.

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00:07:38,120 --> 00:07:39,440
DR. STEPHANIE LEONARD FROM

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STANFORD UNIVERSITY.

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00:07:41,760 --> 00:07:42,040
STEPHANIE?

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>>I'M HERE.

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HI.

207
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>>THANK YOU SO MUCH FOR
JOINING

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00:07:46,200 --> 00:07:48,640
US.

209
00:07:48,640 --> 00:07:50,320
DR. JENNA NOBLES FROM THE

210
00:07:50,320 --> 00:07:53,360
UNIVERSITY OF WISCONSIN-MADISON.

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00:07:53,360 --> 00:07:54,200
>>I'M HERE.

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HELLO.

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00:07:54,880 --> 00:07:55,520
>>GREAT.

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00:07:55,520 --> 00:08:05,680
THANK YOU SO MUCH, JENNA.

215
00:08:05,680 --> 00:08:08,440
DR. WALLACE FROM TULANE

216
00:08:08,440 --> 00:08:09,000
UNIVERSITY SCHOOL OF PUBLIC

217
00:08:09,000 --> 00:08:11,200
HEALTH?

218
00:08:11,200 --> 00:08:12,440
>>SORRY.

219
00:08:12,440 --> 00:08:16,080
YES, I'M HERE, HELLO.

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>>GREAT.

221
00:08:16,640 --> 00:08:18,160
I DON'T NEED EVERYONE TO UNMUTE

222
00:08:18,160 --> 00:08:18,720
AND RESPOND.

223
00:08:18,720 --> 00:08:20,120
I JUST WANTED TO MAKE SURE THAT

224
00:08:20,120 --> 00:08:22,960
YOU ALL ARE THERE AND VISIBLE TO

225
00:08:22,960 --> 00:08:23,640
THE AUDIENCE.

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00:08:23,640 --> 00:08:25,160
THERE ARE ABOUT A HUNDRED PEOPLE

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00:08:25,160 --> 00:08:29,960
WHO HAVE LOGGED IN TO LISTEN TO

228
00:08:29,960 --> 00:08:34,600
THIS IMPORTANT PROCEEDING.

229
00:08:34,600 --> 00:08:36,360
DR. BIANCHI MENTIONED DR. REDDY

230
00:08:36,360 --> 00:08:38,080
AS THE CO-CHAIR.

231
00:08:38,080 --> 00:08:40,400
UMA IS FROM COLUMBIA UNIVERSITY,

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00:08:40,400 --> 00:08:42,120
AND I'M DELIGHTED TO HAVE HER AS

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A PARTNER.

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00:08:45,200 --> 00:08:45,920
DR. DEB CONWAY FROM THE

235
00:08:45,920 --> 00:08:50,040
UNIVERSITY OF TEXAS, THE

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00:08:50,040 --> 00:08:51,320
SAN ANTONIO HEALTH CENTER, IS

237
00:08:51,320 --> 00:08:55,920
HERE WITH US.

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00:08:55,920 --> 00:08:57,680
THEN DR. DON DUDLEY, UNIVERSITY

239
00:08:57,680 --> 00:09:00,960
OF VIRGINIA.

240
00:09:00,960 --> 00:09:08,720
DR. MONICA WOU WOJCIK.

241
00:09:08,720 --> 00:09:12,280
DR. SONIA RAS MUCIN FROM JOHN

242
00:09:12,280 --> 00:09:14,000
HOPKINS SCHOOL OF MEDICINE.

243
00:09:14,000 --> 00:09:15,040
DR. DENISE JAMISON FROM EMORY

244
00:09:15,040 --> 00:09:16,400
UNIVERSITY.

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00:09:16,400 --> 00:09:18,440
DR. AMANDA COHEN FROM THE CDC,

246
00:09:18,440 --> 00:09:19,560
SHE'S DIRECTOR OF THE DIVISION

247
00:09:19,560 --> 00:09:22,920
OF BIRTH DEFECTS.

248
00:09:22,920 --> 00:09:28,520
DR. CARLA DESISTO, ALSO FROM THE

249
00:09:28,520 --> 00:09:29,720
CDC, THE NATIONAL CENTER FOR

250
00:09:29,720 --> 00:09:30,800
CHRONIC DISEASE PREVENTION AND

251
00:09:30,800 --> 00:09:36,000
HEALTH PROMOTION.

252
00:09:36,000 --> 00:09:37,960
AND ITS DIVISION OF REPRODUCTIVE

253
00:09:37,960 --> 00:09:41,680
HEALTH.

254
00:09:41,680 --> 00:09:47,840
DR. ADA DEEK FROM THE CDC,

255
00:09:47,840 --> 00:09:49,240
AGAIN, THE DIVISION OF

256
00:09:49,240 --> 00:09:51,080
REPRODUCTIVE HEALTH.

257
00:09:51,080 --> 00:09:53,200
DR. ISABELLE HORAN, BRANCH CHIEF

258
00:09:53,200 --> 00:09:55,480
OF THE REPRODUCTIVE STATISTICS

259
00:09:55,480 --> 00:09:57,400
BRANCH AND DIVISION OF -- IN THE

260
00:09:57,400 --> 00:10:02,120
DIVISION OF VITAL STATISTICS.

261
00:10:02,120 --> 00:10:04,240
DR. KENA LAU, IHS, MATERNAL

262
00:10:04,240 --> 00:10:06,960
CHILD HEALTH CONSULTANT.

263
00:10:06,960 --> 00:10:11,120
AND THEN WE HAVE MR. ANDREW

264
00:10:11,120 --> 00:10:14,400
FULLERTON, THE DEPUTY FEDERAL

265
00:10:14,400 --> 00:10:15,600
DIRECTOR REPRESENTATIVE FROM

266
00:10:15,600 --> 00:10:16,480
MARCH OF DIMES.

267
00:10:16,480 --> 00:10:24,440
AND FINALLY, DR. KATHRYN

268
00:10:24,440 --> 00:10:27,320
LADISHAU FROM HRSA, THE MATERNAL

269
00:10:27,320 --> 00:10:28,400
CHILD HEALTH BUREAU.

270
00:10:28,400 --> 00:10:29,920
SO DIANA, I HOPE I COVERED

271
00:10:29,920 --> 00:10:30,200
EVERYONE.

272
00:10:30,200 --> 00:10:36,400
IS THERE ANYONE THAT I MISSED?

273
00:10:36,400 --> 00:10:40,000
>>DR. JAIN, IF I MAY, DR.
WANDA

274
00:10:40,000 --> 00:10:42,840
BARFIELD AND DR. ROBERT SILVER.

275
00:10:42,840 --> 00:10:44,360
I SENT THOSE TWO NAMES

276
00:10:44,360 --> 00:10:44,680
SEPARATELY.

277
00:10:44,680 --> 00:10:45,880
>>OH, MY GOODNESS.

278
00:10:45,880 --> 00:10:52,120
HOW CAN I FORGET DR. BARFIELD?

279
00:10:52,120 --> 00:10:54,960
WELCOME, DR. BARFIELD, AND

280
00:10:54,960 --> 00:10:56,960
DR. BOB SILVER IS SUCH A

281
00:10:56,960 --> 00:10:59,120
WELL-KNOWN NAME IN THIS FIELD OF

282
00:10:59,120 --> 00:11:01,760
STILLBIRTH PREVENTION.

283
00:11:01,760 --> 00:11:03,280
SO BOB, WE'RE DELIGHTED TO HAVE

284
00:11:03,280 --> 00:11:04,480
YOU JOIN THIS WORKING GROUP AS

285
00:11:04,480 --> 00:11:10,920
WELL.

286
00:11:10,920 --> 00:11:12,480
SO WITH THAT, WITH THOSE

287
00:11:12,480 --> 00:11:15,000
INTRODUCTIONS, I'LL INVITE

288
00:11:15,000 --> 00:11:19,360
DR. NATASHA WILLIAMS TO START

289
00:11:19,360 --> 00:11:20,760
THE PROCEEDINGS BY DISCUSSING

290
00:11:20,760 --> 00:11:22,640
THE BACKGROUND, GOALS, THE

291
00:11:22,640 --> 00:11:24,120
TIMELINE AND WHAT WE EXPECT OUT

292
00:11:24,120 --> 00:11:28,560
OF THE REPORT COMING OUT OF THIS

293
00:11:28,560 --> 00:11:30,080
WORKING GROUP.

294
00:11:30,080 --> 00:11:30,320
NATASHA?

295
00:11:30,320 --> 00:11:31,600
>>YES.

296
00:11:31,600 --> 00:11:33,200
>>CAN YOU FIRST INTRODUCE

297
00:11:33,200 --> 00:11:34,880
YOURSELF TO THE GROUP, AND THEN

298
00:11:34,880 --> 00:11:39,480
IT WILL BE WONDERFUL AND YOU GET

299
00:11:39,480 --> 00:11:40,040
US STARTED.

300
00:11:40,040 --> 00:11:41,320
>>YES, THANK YOU, DR.
JAIN.

301
00:11:41,320 --> 00:11:43,120
MY NAME IS NATASHA WILLIAMS.

302
00:11:43,120 --> 00:11:46,080
I'M THE CHIEF OF LEGISLATION AND

303
00:11:46,080 --> 00:11:48,760
PUBLIC POLICY AT NICHD.

304
00:11:48,760 --> 00:11:50,400
THANK YOU, I'M GLAD TO BE HERE

305
00:11:50,400 --> 00:11:51,080
TODAY.

306
00:11:51,080 --> 00:11:53,400
AND I WOULD LIKE TO GIVE YOU A

307
00:11:53,400 --> 00:11:54,160
BACKGROUND REGARDING THIS

308
00:11:54,160 --> 00:11:57,320
MEETING.

309
00:11:57,320 --> 00:11:58,520
THE CREATION OF THE TASK FORCE

310
00:11:58,520 --> 00:12:01,160
ON STILLBIRTH WAS DESCRIBED IN

311
00:12:01,160 --> 00:12:04,080
THE FISCAL YEAR 2022, U.S. HOUSE

312
00:12:04,080 --> 00:12:06,280
OF REPRESENTATIVES REPORT

313
00:12:06,280 --> 00:12:08,440
LANGUAGE, AND FUNDED IN THE

314
00:12:08,440 --> 00:12:12,200
CONSOLIDATED APPROPRIATIONS ACT

315
00:12:12,200 --> 00:12:14,320
OF 2022, WHICH BECAME LAW ON

316
00:12:14,320 --> 00:12:14,600
MARCH 15TH.

317
00:12:14,600 --> 00:12:18,960
THIS IS PUBLIC LAW 117-103.

318
00:12:18,960 --> 00:12:21,480
THE U.S. DEPARTMENT OF HEALTH

319
00:12:21,480 --> 00:12:25,960
AND HUMAN SERVICES REQUESTED THE

320
00:12:25,960 --> 00:12:27,720
NICHD TO LEAD THIS TASK FORCE.

321
00:12:27,720 --> 00:12:30,800
THE GOALS OF THE TASK FORCE AS

322
00:12:30,800 --> 00:12:35,840
PER THE FY 22 HOUSE REPORT

323
00:12:35,840 --> 00:12:37,440
LANGUAGE ARE AS FOLLOWS.

324
00:12:37,440 --> 00:12:39,640
THE TASK FORCE SHOULD INCLUDE

325
00:12:39,640 --> 00:12:45,000
THE CDC, NIH, OUTSIDE SPECIALTY

326
00:12:45,000 --> 00:12:46,760
ORGANIZATIONS, AND MATERNAL AND

327
00:12:46,760 --> 00:12:48,600
FETAL MEDICINE SPECIALISTS.

328
00:12:48,600 --> 00:12:52,000
THIS TASK FORCE SHOULD FOCUS ON

329
00:12:52,000 --> 00:12:53,440
THE CURRENT BARRIERS TO

330
00:12:53,440 --> 00:12:55,160
COLLECTING DATA ON STILLBIRTHS

331
00:12:55,160 --> 00:12:58,760
THROUGHOUT THE U.S., COMMUNITIES

332
00:12:58,760 --> 00:13:02,400
AT HIGHER RISK OF STILLBIRTH,

333
00:13:02,400 --> 00:13:04,040
THE PSYCHOLOGICAL IMPACT AND

334
00:13:04,040 --> 00:13:07,240
TREATMENT FOR MOTHERS FOLLOWING

335
00:13:07,240 --> 00:13:08,640
STILLBIRTH, AND KNOWN RISK

336
00:13:08,640 --> 00:13:12,640
FACTORS FOR STILLBIRTH.

337
00:13:12,640 --> 00:13:13,040
TIMELINE.

338
00:13:13,040 --> 00:13:15,280
THE TASK FORCE TO PROVIDE A

339
00:13:15,280 --> 00:13:18,360
REPORT ON THESE ISSUES WITHIN A

340
00:13:18,360 --> 00:13:20,760
YEAR OF ENACTMENT OF THIS ACT,

341
00:13:20,760 --> 00:13:25,360
WHICH WAS ON MARCH 15TH, 2022.

342
00:13:25,360 --> 00:13:31,600
FUTURE MEETINGS WILL BE HELD ON

343
00:13:31,600 --> 00:13:33,800
NOVEMBER 22ND AND DECEMBER 9TH.

344
00:13:33,800 --> 00:13:35,080
THE REPORT.

345
00:13:35,080 --> 00:13:37,840
THE PRELIMINARY REPORT WILL BE

346
00:13:37,840 --> 00:13:41,440
PRESENTED TO NICHD'S NATIONAL

347
00:13:41,440 --> 00:13:43,640
ADVISORY COUNCIL IN

348
00:13:43,640 --> 00:13:46,440
JANUARY 2023.

349
00:13:46,440 --> 00:13:47,880
THE FINAL REPORT WILL BE

350
00:13:47,880 --> 00:13:51,040
SUBMITTED TO HHS IN MARCH OF

351
00:13:51,040 --> 00:13:55,120
2023.

352
00:13:55,120 --> 00:13:57,320
THANK YOU, AND PLEASE LET ME

353
00:13:57,320 --> 00:14:04,920
KNOW IF THERE ARE ANY QUESTIONS.

354
00:14:04,920 --> 00:14:08,160
>>THANK YOU, DR. WSSMENTS
ANY .

355
00:14:08,160 --> 00:14:10,120
ANY QUESTIONS FOR DR. WILLIAMS?

356
00:14:10,120 --> 00:14:13,160
THERE ARE TWO WAYS OF ASKING

357
00:14:13,160 --> 00:14:13,600
QUESTIONS.

358
00:14:13,600 --> 00:14:15,880
YOU CAN PUT THEM IN THE CHAT

359
00:14:15,880 --> 00:14:19,200
BOX, AND FOR THE WORKING GROUP

360
00:14:19,200 --> 00:14:20,680
MEMBERS, YOU'RE WELCOME TO

361
00:14:20,680 --> 00:14:24,000
UNMUTE YOURSELF AND ASK

362
00:14:24,000 --> 00:14:24,960
QUESTIONS AS WE PROCEED.

363
00:14:24,960 --> 00:14:28,600
IF THERE ARE NO QUESTIONS FOR

364
00:14:28,600 --> 00:14:31,200
DR. WILLIAMS, I WILL INVITE

365
00:14:31,200 --> 00:14:33,720
DR. MONICA LONGO TO START THE

366
00:14:33,720 --> 00:14:37,280
SESSION ON IDENTIFICATION OF

367
00:14:37,280 --> 00:14:38,320
FEDERAL ACTIVITIES RELATED TO

368
00:14:38,320 --> 00:14:41,800
THIS TOPIC OF STILLBIRTH.

369
00:14:41,800 --> 00:14:42,480
DR. LONGO?

370
00:14:42,480 --> 00:14:43,800
>>HI.

371
00:14:43,800 --> 00:14:44,400
THANK YOU.

372
00:14:44,400 --> 00:14:45,400
>>HI.

373
00:14:45,400 --> 00:14:46,760
WILL YOU PLEASE INTRODUCE

374
00:14:46,760 --> 00:14:50,120
YOURSELF AND THEN INVITE

375
00:14:50,120 --> 00:14:51,360
SPEAKERS YOU'VE ASSEMBLED FOR

376
00:14:51,360 --> 00:14:53,520
THIS PANEL.

377
00:14:53,520 --> 00:14:53,960
>>OF COURSE.

378
00:14:53,960 --> 00:14:55,160
THANK YOU, EVERYONE.

379
00:14:55,160 --> 00:14:57,280
GOOD AFTERNOON, AND I AM MONICA

380
00:14:57,280 --> 00:14:58,320
LONGO.

381
00:14:58,320 --> 00:15:02,400
I AM CHIEF MEDICAL OFFICER AT

382
00:15:02,400 --> 00:15:05,320
NICHD AND I'M A MATERNAL-FETAL

383
00:15:05,320 --> 00:15:08,600
MEDICINE AS A BACKGROUND.

384
00:15:08,600 --> 00:15:10,240
I WOULD LIKE TO THANK YOU FOR

385
00:15:10,240 --> 00:15:11,920
ACCEPTING TO BE PART OF THIS

386
00:15:11,920 --> 00:15:12,880
STILLBIRTH TASK FORCE.

387
00:15:12,880 --> 00:15:16,600
VERY IMPORTANT ACTIVITY, AS

388
00:15:16,600 --> 00:15:18,000
DR. JAIN, DR. BIANCHI AND

389
00:15:18,000 --> 00:15:18,480
EVERYONE HAS SAID.

390
00:15:18,480 --> 00:15:27,520
I WOULD LIKE TO INTRODUCE NOW

391
00:15:27,520 --> 00:15:30,080
DR. -- OFFICE OF SCIENCE POLICY,

392
00:15:30,080 --> 00:15:35,320
AND SHE WILL PRESENT ON THE

393
00:15:35,320 --> 00:15:37,720
STILLBIRTH PUBLICATION.

394
00:15:37,720 --> 00:15:38,920
I GIVE TO YOU.

395
00:15:38,920 --> 00:15:39,320
THANK YOU.

396
00:15:39,320 --> 00:15:42,640
>>THANK YOU.

397
00:15:42,640 --> 00:15:44,480
AS MONICA JUST TOLD YOU, I'M

398
00:15:44,480 --> 00:15:46,480
SARAH GLAVIN.

399
00:15:46,480 --> 00:15:48,000
I'M PRESENTING TODAY ON BEHALF

400
00:15:48,000 --> 00:15:50,800
OF OUR ANALYSIS TEAM IN THE

401
00:15:50,800 --> 00:15:52,920
OFFICE OF SCIENCE POLICY,

402
00:15:52,920 --> 00:15:56,760
PLANNING, AND EVALUATION AT THE

403
00:15:56,760 --> 00:15:58,920
NICHD.

404
00:15:58,920 --> 00:16:00,960
I AM GOING TO SHARE MY SCREEN AS

405
00:16:00,960 --> 00:16:04,480
SOON AS I CAN CLICK THE CORRECT

406
00:16:04,480 --> 00:16:08,760
BUTTON.

407
00:16:08,760 --> 00:16:18,720
AND CAN YOU SEE THE SLIDES HERE?

408
00:16:18,720 --> 00:16:20,920
>>YES, WE CAN.

409
00:16:20,920 --> 00:16:22,600
BUT YOU'RE NOT IN PRESENTER

410
00:16:22,600 --> 00:16:22,800
MODE.

411
00:16:22,800 --> 00:16:24,760
>>YES, I'M TRYING TO --
FOR

412
00:16:24,760 --> 00:16:27,840
SOME REASON MY MOUSE DOES NOT

413
00:16:27,840 --> 00:16:29,760
SEEM TO COOPERATE.

414
00:16:29,760 --> 00:16:30,560
WITH ME.

415
00:16:30,560 --> 00:16:37,240
>>AS USUAL.

416
00:16:37,240 --> 00:16:38,880
>>SO THAT SHOULD DO IT.

417
00:16:38,880 --> 00:16:39,520
IS THAT RIGHT?

418
00:16:39,520 --> 00:16:40,120
>>NO.

419
00:16:40,120 --> 00:16:40,920
>>NO?

420
00:16:40,920 --> 00:16:48,800
STILL NOT.

421
00:16:48,800 --> 00:16:49,360
>>IS THAT RIGHT?

422
00:16:49,360 --> 00:16:50,000
>>YES.

423
00:16:50,000 --> 00:16:50,400
YOU GOT IT.

424
00:16:50,400 --> 00:16:51,080
>>OKAY.

425
00:16:51,080 --> 00:16:55,800
>>THANK YOU.

426
00:16:55,800 --> 00:16:56,760
>>ALL RIGHT, THANK YOU
VERY

427
00:16:56,760 --> 00:16:57,760
MUCH.

428
00:16:57,760 --> 00:17:00,200
NATASHA DID A GREAT JOB

429
00:17:00,200 --> 00:17:01,480
DESCRIBING THE CONGRESSIONAL

430
00:17:01,480 --> 00:17:02,440
MANDATE, SO I'M NOT GOING TO

431
00:17:02,440 --> 00:17:04,120
SPEND A LOT OF TIME TALKING

432
00:17:04,120 --> 00:17:04,640
ABOUT IT.

433
00:17:04,640 --> 00:17:08,080
JUST TO LET YOU KNOW THAT THIS

434
00:17:08,080 --> 00:17:09,480
WAS THE KEY SENTENCE IN THE

435
00:17:09,480 --> 00:17:12,320
MANDATE, THAT WE LOOK AT

436
00:17:12,320 --> 00:17:13,720
BARRIERS TO COLLECTING DATA,

437
00:17:13,720 --> 00:17:16,920
COMMUNITIES AT HIGH RISK,

438
00:17:16,920 --> 00:17:17,800
PSYCHOLOGICAL IMPACT AND

439
00:17:17,800 --> 00:17:19,120
TREATMENT, AND KNOWN RISK

440
00:17:19,120 --> 00:17:20,160
FACTORS.

441
00:17:20,160 --> 00:17:23,480
AND THIS WAS THE SENTENCE THAT

442
00:17:23,480 --> 00:17:25,280
WE USED TO GUIDE THE ANALYSIS

443
00:17:25,280 --> 00:17:26,200
THAT WE'RE GOING TO PRESENT TO

444
00:17:26,200 --> 00:17:29,400
YOU TODAY.

445
00:17:29,400 --> 00:17:32,800
YOU ARE EXPERTS IN THIS FIELD,

446
00:17:32,800 --> 00:17:34,640
SO I DON'T WANT TO SPEND A LOT

447
00:17:34,640 --> 00:17:36,600
OF TIME ON INTRODUCTIONS, BUT

448
00:17:36,600 --> 00:17:38,440
THERE ARE A COUPLE OF PIECES OF

449
00:17:38,440 --> 00:17:41,640
INFORMATION THAT ARE REALLY

450
00:17:41,640 --> 00:17:42,880
IMPORTANT FOR AND HAVE

451
00:17:42,880 --> 00:17:44,480
IMPLICATIONS FOR THE ANALYSIS TO

452
00:17:44,480 --> 00:17:46,440
FOLLOW.

453
00:17:46,440 --> 00:17:51,320
SO JUST TO SET THE STAGE A BIT,

454
00:17:51,320 --> 00:17:52,920
IT IS USEFUL FOR US TO REMEMBER

455
00:17:52,920 --> 00:17:54,640
THAT STILLBIRTH IS AN OUTCOME AS

456
00:17:54,640 --> 00:17:56,360
OPPOSED TO A DISEASE OR A

457
00:17:56,360 --> 00:17:57,800
CONDITION, AND YOU'LL SEE LATER

458
00:17:57,800 --> 00:18:01,640
ON THAT THAT INFLUENCES HOW WE

459
00:18:01,640 --> 00:18:03,880
ARE ABLE TO TRACK STILLBIRTH

460
00:18:03,880 --> 00:18:07,360
RESEARCH.

461
00:18:07,360 --> 00:18:08,760
AND ANOTHER THING THAT'S VERY

462
00:18:08,760 --> 00:18:11,920
IMPORTANT TO THINK ABOUT IS THAT

463
00:18:11,920 --> 00:18:13,200
STILLBIRTH -- WE'LL SEE,

464
00:18:13,200 --> 00:18:14,320
STILLBIRTH IS VERY OFTEN STUDIED

465
00:18:14,320 --> 00:18:16,200
IN CONJUNCTION WITH OTHER

466
00:18:16,200 --> 00:18:22,640
PREGNANCY OUTCOMES, RELATED

467
00:18:22,640 --> 00:18:25,280
CONDITIONS ORIS BEING FACTORS.

468
00:18:25,280 --> 00:18:27,560
SO STILLBIRTH RESEARCH IS OFTEN

469
00:18:27,560 --> 00:18:31,520
MINGLED WITH RESEARCH ON OTHER

470
00:18:31,520 --> 00:18:35,800
TOPICS.

471
00:18:35,800 --> 00:18:37,200
SO THERE'S ALSO A VERY BROAD

472
00:18:37,200 --> 00:18:38,040
INTERNATIONAL INTEREST IN

473
00:18:38,040 --> 00:18:40,720
STILLBIRTH.

474
00:18:40,720 --> 00:18:42,680
THIS IS A WORLDWIDE ISSUE, AND

475
00:18:42,680 --> 00:18:43,560
YOU'LL SEE THAT IN THE

476
00:18:43,560 --> 00:18:44,400
LITERATURE THAT WE'RE ABOUT TO

477
00:18:44,400 --> 00:18:49,720
SHARE WITH YOU.

478
00:18:49,720 --> 00:18:51,280
SO WHAT WERE WE LACKING AT?

479
00:18:51,280 --> 00:18:52,600
SO THESE WERE THE KEY QUESTIONS.

480
00:18:52,600 --> 00:18:55,760
WE WERE TRYING TO JUST GIVE YOU

481
00:18:55,760 --> 00:18:58,000
A BROAD UNDERSTANDING OF SOME OF

482
00:18:58,000 --> 00:18:59,280
THE CHARACTERISTICS OF THE

483
00:18:59,280 --> 00:19:02,640
OVERALL RESEARCH LITERATURE,

484
00:19:02,640 --> 00:19:03,840
REGARDLESS OF WHETHER IT WAS

485
00:19:03,840 --> 00:19:07,160
FUNDED BY NIH OR NOT.

486
00:19:07,160 --> 00:19:09,320
THEN WE TOOK A LITTLE BIT CLOSER

487
00:19:09,320 --> 00:19:11,080
LOOK AT HOW NIH FUNDING HAS

488
00:19:11,080 --> 00:19:11,960
CONTRIBUTED TO THAT LITERATURE

489
00:19:11,960 --> 00:19:14,600
AND THE CHARACTERISTICS OF NIH'S

490
00:19:14,600 --> 00:19:19,600
GRANT PORTFOLIO ON THE TOPIC.

491
00:19:19,600 --> 00:19:22,320
AND WE'LL GO INTO MORE OF THE

492
00:19:22,320 --> 00:19:24,440
METHODOLOGY AS WE GET TO EACH

493
00:19:24,440 --> 00:19:27,360
INDIVIDUAL SECTION.

494
00:19:27,360 --> 00:19:30,200
BUT BROADLY SPEAKING, FOR

495
00:19:30,200 --> 00:19:33,520
PUBLICATIONS, WE LOOKED AT DATA

496
00:19:33,520 --> 00:19:40,920
FROM SCOPUS AND PUBMED SEARCHES

497
00:19:40,920 --> 00:19:41,800
FOR ANSWER TO THAT FIRST

498
00:19:41,800 --> 00:19:42,600
QUESTION, WHAT ARE

499
00:19:42,600 --> 00:19:43,680
CHARACTERISTICS OF THE OVERALL

500
00:19:43,680 --> 00:19:45,000
RESEARCH LITERATURE.

501
00:19:45,000 --> 00:19:46,600
FOR NIH GRANTS, WE HAD TWO

502
00:19:46,600 --> 00:19:47,480
DISTINCT APPROACHES.

503
00:19:47,480 --> 00:19:50,440
SO FIRST WE LOOKED AT GRANTS

504
00:19:50,440 --> 00:19:51,840
THAT WERE LINKED TO THE

505
00:19:51,840 --> 00:19:53,040
STILLBIRTH PUBLICATIONS IN THOSE

506
00:19:53,040 --> 00:19:59,000
LITERATURE SEARCHES FROM

507
00:19:59,000 --> 00:19:59,320
QUESTION ONE.

508
00:19:59,320 --> 00:20:01,520
SO THIS REALLY HELPED US LOOK AT

509
00:20:01,520 --> 00:20:03,120
WHICH NIH GRANTS AND WHAT NIH

510
00:20:03,120 --> 00:20:07,200
GRANTS HAVE CONTRIBUTED.

511
00:20:07,200 --> 00:20:09,800
WE ALSO THEN LOOKED AT EACH

512
00:20:09,800 --> 00:20:11,560
PORTFOLIO FROM OUR OWN INTERNAL

513
00:20:11,560 --> 00:20:13,560
NIH SYSTEMS, AND THESE ARE DATA

514
00:20:13,560 --> 00:20:16,520
WHERE WE'RE LOOKING AT THE

515
00:20:16,520 --> 00:20:25,240
CONTENT OF NIH GRANTS ON

516
00:20:25,240 --> 00:20:26,560
STILLBIRTH WITHOUT RESPECT TO

517
00:20:26,560 --> 00:20:26,880
PUBLICATIONS.

518
00:20:26,880 --> 00:20:28,400
AND THAT WAS THE DATA WE USED TO

519
00:20:28,400 --> 00:20:29,640
ANSWER THAT THIRD QUESTION, THE

520
00:20:29,640 --> 00:20:30,080
CHARACTERISTICS OF THE

521
00:20:30,080 --> 00:20:35,520
PORTFOLIO.

522
00:20:35,520 --> 00:20:37,120
FOR MOST RESEARCH TOPICS AT NIH

523
00:20:37,120 --> 00:20:39,800
THAT WE LOOK AT, THESE TWO DATA

524
00:20:39,800 --> 00:20:41,440
SOURCES ARE PRETTY TIGHTLY

525
00:20:41,440 --> 00:20:42,560
ALIGNED.

526
00:20:42,560 --> 00:20:46,160
THEY'RE NEVER GOING TO BE

527
00:20:46,160 --> 00:20:47,360
IDENTICAL, BUT MOST OF THE TIME,

528
00:20:47,360 --> 00:20:49,000
MOST OF THE PUBLICATIONS THAT

529
00:20:49,000 --> 00:20:54,760
YOU SEE COME FROM GRANTS THAT

530
00:20:54,760 --> 00:21:01,120
YOU COULD TE TELL AP A PRIORI RE

531
00:21:01,120 --> 00:21:04,080
TO THAT SPECIFIC RESEARCH TOPIC.

532
00:21:04,080 --> 00:21:06,280
FOR STILLBIRTH, HOWEVER, WE

533
00:21:06,280 --> 00:21:07,040
DISCOVERED THAT WAS NOT THE

534
00:21:07,040 --> 00:21:07,280
CASE.

535
00:21:07,280 --> 00:21:08,560
I'M GOING TO WALK YOU THROUGH

536
00:21:08,560 --> 00:21:10,520
THIS ODD LOOKING VENN DIAGRAM

537
00:21:10,520 --> 00:21:11,400
HERE.

538
00:21:11,400 --> 00:21:12,480
THE RECTANGLE TO THE LEFT SIDE

539
00:21:12,480 --> 00:21:14,760
OF THE SCREEN THAT IS BLUE,

540
00:21:14,760 --> 00:21:17,640
GREEN, WITH A LITTLE GREY, THAT

541
00:21:17,640 --> 00:21:25,200
IS THE UNIVERSE OF GRANTS YOU

542
00:21:25,200 --> 00:21:26,480
WHICH YOU CAN IDENTIFY FROM THE

543
00:21:26,480 --> 00:21:27,600
TEXT OF THE GRANT AS BEING

544
00:21:27,600 --> 00:21:29,880
RELATED TO STILLBIRTH.

545
00:21:29,880 --> 00:21:31,960
THE LAYER THAT IS PARTLY GREEN

546
00:21:31,960 --> 00:21:35,120
AND PARTLY YELLOW AND BLACK

547
00:21:35,120 --> 00:21:37,760
STRIPED WITH A LITTLE SLIVER OF

548
00:21:37,760 --> 00:21:41,800
GREY IS THE NIH GRANTS THAT

549
00:21:41,800 --> 00:21:43,760
CONTRIBUTED TO THE LITERATURE,

550
00:21:43,760 --> 00:21:48,120
AND SO THE YELLOW WITH THE BLACK

551
00:21:48,120 --> 00:21:49,240
STRIPES ARE THOSE GRANTS THAT

552
00:21:49,240 --> 00:21:51,440
WERE NOT IDENTIFIED AS

553
00:21:51,440 --> 00:21:54,960
STILLBIRTH, BUT WOUND UP

554
00:21:54,960 --> 00:21:58,200
PRODUCING STILLBIRTH

555
00:21:58,200 --> 00:21:58,600
PUBLICATIONS.

556
00:21:58,600 --> 00:22:02,120
SO YOU SEE ON THE RIGHT PART OF

557
00:22:02,120 --> 00:22:03,240
THE SLIDE EXACTLY HALF OF THE

558
00:22:03,240 --> 00:22:04,800
GRANTS THAT WOULD BE IDENTIFIED

559
00:22:04,800 --> 00:22:09,440
AS STILLBIRTH FROM THE SPECIFIC

560
00:22:09,440 --> 00:22:12,240
AIMS, THE ABSTRACT, THE PUBLIC

561
00:22:12,240 --> 00:22:20,640
HEALTH RES REL VA VANS, RELEVANE

562
00:22:20,640 --> 00:22:22,680
GRANTS DID NOT PRODUCE ANY

563
00:22:22,680 --> 00:22:23,160
PUBLICATIONS RELATED TO

564
00:22:23,160 --> 00:22:24,000
STILLBIRTH.

565
00:22:24,000 --> 00:22:25,120
THAT LITTLE GREY PART HERE,

566
00:22:25,120 --> 00:22:26,200
THESE ARE GRANTS THAT BASICALLY

567
00:22:26,200 --> 00:22:28,520
JUST STARTED AND YOU COULDN'T

568
00:22:28,520 --> 00:22:30,600
REASONABLY EXPECT THEM TO YET

569
00:22:30,600 --> 00:22:36,840
PRODUCE PUBLICATIONS.

570
00:22:36,840 --> 00:22:38,040
BUT PRETTY MUCH ABOUT HALF DID

571
00:22:38,040 --> 00:22:40,760
NOT.

572
00:22:40,760 --> 00:22:44,280
THE YELLOW SQUARE WITH THE

573
00:22:44,280 --> 00:22:45,120
STRIPES, THESE ARE ALL OF THE

574
00:22:45,120 --> 00:22:48,320
GRANTS THAT PRODUCED

575
00:22:48,320 --> 00:22:52,720
PUBLICATIONS, BUT WERE NOT

576
00:22:52,720 --> 00:22:53,680
IDENTIFIED AS STILLBIRTH

577
00:22:53,680 --> 00:22:54,000
RESEARCH.

578
00:22:54,000 --> 00:22:57,400
THE GREEN IS BOTH, AND THE

579
00:22:57,400 --> 00:22:59,040
LITTLE SLIVER OF GREY AGAIN IS

580
00:22:59,040 --> 00:23:00,880
GRANTS THAT WERE OUTSIDE OF THE

581
00:23:00,880 --> 00:23:01,800
TIME SCOPE.

582
00:23:01,800 --> 00:23:04,280
SO A PUBLICATION, FOR EXAMPLE,

583
00:23:04,280 --> 00:23:07,560
MAY CREDIT A GRANT THAT WAS NOT

584
00:23:07,560 --> 00:23:09,320
FUNDED IN THE SAME TIME PERIOD

585
00:23:09,320 --> 00:23:13,360
AS THIS RECTANGLE.

586
00:23:13,360 --> 00:23:14,560
SO WE'LL TALK A LITTLE BIT ABOUT

587
00:23:14,560 --> 00:23:17,080
WHY THIS IS THE WAY THAT THE

588
00:23:17,080 --> 00:23:18,480
LITERATURE LOOKS.

589
00:23:18,480 --> 00:23:23,320
BUT I WANTED TO DO THIS RIGHT

590
00:23:23,320 --> 00:23:25,160
OFF THE HAND SO YOU COULD SEE.

591
00:23:25,160 --> 00:23:26,360
THE FIRST SECTION OF ANALYSES

592
00:23:26,360 --> 00:23:30,400
THAT WE'RE GOING TO SHARE WITH

593
00:23:30,400 --> 00:23:31,840
YOU, THOSE DEAL WITH THIS BOX

594
00:23:31,840 --> 00:23:34,000
THAT'S HIGHLIGHTED, WHICH IS THE

595
00:23:34,000 --> 00:23:35,560
GRANTS THAT CONTRIBUTED TO

596
00:23:35,560 --> 00:23:37,000
PUBLICATIONS.

597
00:23:37,000 --> 00:23:39,600
THEN WE'RE GOING TO SWITCH

598
00:23:39,600 --> 00:23:43,760
GEARS, AND THE SECOND SET OF

599
00:23:43,760 --> 00:23:53,720
ANAL SEALS DEALANALYSES -- THEN,

600
00:23:53,720 --> 00:23:55,800
YOU'LL SEE WHY THESE DIFFERENT

601
00:23:55,800 --> 00:23:57,440
BOXES DON'T HAVE QUITE THE

602
00:23:57,440 --> 00:23:59,720
OVERLAP THAT IS TYPICAL FOR AN

603
00:23:59,720 --> 00:24:03,560
NIH PORTFOLIO.

604
00:24:03,560 --> 00:24:05,320
SO I'M JUST GOING TO PAUSE THERE

605
00:24:05,320 --> 00:24:08,600
FOR A SECOND AND MAKE SURE THAT

606
00:24:08,600 --> 00:24:15,320
MADE SENSE TO YOU AND SEE IF YOU

607
00:24:15,320 --> 00:24:16,560
HAVE ANY QUESTIONS ABOUT THAT

608
00:24:16,560 --> 00:24:23,160
BEFORE WE GET MOVING ALONG.

609
00:24:23,160 --> 00:24:25,240
>>SARAH, THANK YOU.

610
00:24:25,240 --> 00:24:26,480
THIS FRAMEWORK IS VERY HELPFUL.

611
00:24:26,480 --> 00:24:27,320
>>OKAY.

612
00:24:27,320 --> 00:24:27,840
WELL, THANK YOU.

613
00:24:27,840 --> 00:24:29,360
I APPRECIATE THAT.

614
00:24:29,360 --> 00:24:34,320
SO NOW WE'RE GOING TO MOVE TO

615
00:24:34,320 --> 00:24:35,720
THAT YELLOW BOX AND LOOK AT THE

616
00:24:35,720 --> 00:24:36,720
RESEARCH LITERATURE ON

617
00:24:36,720 --> 00:24:42,080
STILLBIRTH.

618
00:24:42,080 --> 00:24:43,400
GOOD, MY COMPUTER IS NOW

619
00:24:43,400 --> 00:24:44,000
COOPERATING.

620
00:24:44,000 --> 00:24:45,360
SO AS WE SAID BEFORE, WE REALLY

621
00:24:45,360 --> 00:24:47,840
LOOKED AT LITERATURE FROM TWO

622
00:24:47,840 --> 00:24:51,600
DATABASES FROM SCOPUS AND

623
00:24:51,600 --> 00:24:53,000
PUBMED, WHICH LARGELY OVERLAP.

624
00:24:53,000 --> 00:24:55,520
WE SEARCHED THESE DATABASES

625
00:24:55,520 --> 00:24:58,560
USING STILLBIRTH TERMS AND

626
00:24:58,560 --> 00:25:00,320
CONCEPTS INCLUDEDED IN THE

627
00:25:00,320 --> 00:25:01,560
THESAURUS FROM NIH'S INTERNAL

628
00:25:01,560 --> 00:25:02,720
SYSTEM THAT GENERATES OUR

629
00:25:02,720 --> 00:25:03,160
RESEARCH REPORTS.

630
00:25:03,160 --> 00:25:04,920
AND WE DID THAT SO THAT WE COULD

631
00:25:04,920 --> 00:25:06,240
BE CONSISTENT WITH HOW WE

632
00:25:06,240 --> 00:25:07,400
SEARCHED THE LITERATURE VERSUS

633
00:25:07,400 --> 00:25:08,760
HOW WE SEARCHED GRANTS.

634
00:25:08,760 --> 00:25:11,160
AND THEN WE LINKED PUBLICATIONS

635
00:25:11,160 --> 00:25:14,240
TO THOSE NIH GRANTS.

636
00:25:14,240 --> 00:25:16,280
WE CHOSE A FAIRLY WIDE RANGE OF

637
00:25:16,280 --> 00:25:16,600
YEARS.

638
00:25:16,600 --> 00:25:22,520
WE WENT FROM 2005 TO 2022, AND

639
00:25:22,520 --> 00:25:25,160
AS YOU'LL SEE FURTHER ON, WE

640
00:25:25,160 --> 00:25:28,760
USED -- SCOPUS HAS ITS OWN

641
00:25:28,760 --> 00:25:32,480
THESAURUS THAT HAS INDEXED TERMS

642
00:25:32,480 --> 00:25:35,520
AND WE USE ALGORITHMS FROM THOSE

643
00:25:35,520 --> 00:25:37,160
INDEX TERMS TO HELP IDENTIFY

644
00:25:37,160 --> 00:25:41,440
ARTICLES RO RELATED TO SOME

645
00:25:41,440 --> 00:25:41,760
SUBTOPICS.

646
00:25:41,760 --> 00:25:43,360
NOW THIS HAS SEVERAL

647
00:25:43,360 --> 00:25:44,760
LIMITATIONS, AND YOU'LL SEE THE

648
00:25:44,760 --> 00:25:47,160
IMPACT OF THOSE LIMITATIONS AT

649
00:25:47,160 --> 00:25:48,120
VARIOUS POINTS IN THE FOLLOWING

650
00:25:48,120 --> 00:25:50,640
SLIDES.

651
00:25:50,640 --> 00:25:54,040
A KEY LIMITATION IS THAT WE DID

652
00:25:54,040 --> 00:25:57,000
NOT HAVE THE TIME OR RESOURCES

653
00:25:57,000 --> 00:26:01,480
TO MANUALLY VALIDATE AND SCREEN

654
00:26:01,480 --> 00:26:04,880
THE ENTIRE GROUP, AND THE

655
00:26:04,880 --> 00:26:05,960
AUTOMATION TOOLS ARE SUBJECT TO

656
00:26:05,960 --> 00:26:06,280
ERROR.

657
00:26:06,280 --> 00:26:08,920
NOT ONLY THAT, BUT INTER THERE E

658
00:26:08,920 --> 00:26:10,120
SOME TOPICS THAT WE REALLY WOULD

659
00:26:10,120 --> 00:26:12,120
HAVE LIKED TO HAVE BEEN ABLE TO

660
00:26:12,120 --> 00:26:13,720
TAKE A DEEPER DIVE INTO THAT WE

661
00:26:13,720 --> 00:26:16,200
JUST WERE NOT WELL SUITED TO

662
00:26:16,200 --> 00:26:18,640
USING THE AUTOMATED TOOLS AT OUR

663
00:26:18,640 --> 00:26:25,320
DISPOSAL.

664
00:26:25,320 --> 00:26:27,000
SO THE N, THE SAMPLE SIZE FOR

665
00:26:27,000 --> 00:26:28,320
THE SLIDES YOU'RE ABOUT TO SEE,

666
00:26:28,320 --> 00:26:36,240
IS THIS 19,916 APPLICATIONS THAT

667
00:26:36,240 --> 00:26:38,880
WAS -- WE SCOPED OUT A BUNCH OF

668
00:26:38,880 --> 00:26:40,480
THINGS AND YOU CAN SEE ON THE

669
00:26:40,480 --> 00:26:41,520
RIGHT-HAND SIDE THE THINGS THAT

670
00:26:41,520 --> 00:26:48,400
WE SCOPED OUT.

671
00:26:48,400 --> 00:26:50,160
TO TRY TO GET A GROUP OF

672
00:26:50,160 --> 00:26:51,360
PUBLICATIONS THAT, AS BEST WE

673
00:26:51,360 --> 00:26:53,360
COULD WITHOUT, AGAIN, VALIDATING

674
00:26:53,360 --> 00:26:56,280
20,000 BY HAND, REPRESENTED THE

675
00:26:56,280 --> 00:26:57,680
RESEARCH LITERATURE ON

676
00:26:57,680 --> 00:26:58,120
STILLBIRTH.

677
00:26:58,120 --> 00:27:01,600
SO WE ELIMINATED THINGS LIKE --

678
00:27:01,600 --> 00:27:03,400
WE ELIMINATED ARTICLES THAT HAD

679
00:27:03,400 --> 00:27:05,640
BEEN RETRACTED, WE ELIMINATED

680
00:27:05,640 --> 00:27:08,200
PUBLICATIONS THAT WERE IN PURELY

681
00:27:08,200 --> 00:27:11,880
VETERINARY JOURNALS, EDITORIALS,

682
00:27:11,880 --> 00:27:13,000
A NUMBER OF THINGS.

683
00:27:13,000 --> 00:27:18,640
SO AS YOU GO ALONG, THE N FOR

684
00:27:18,640 --> 00:27:21,080
THE NEXT SET OF SLIDES IS THAT

685
00:27:21,080 --> 00:27:22,040
19,916.

686
00:27:22,040 --> 00:27:25,000
SO THE FIRST THING WE DID IS TO

687
00:27:25,000 --> 00:27:26,440
LOOK AT THIS BY YEAR OVER TIME.

688
00:27:26,440 --> 00:27:27,560
SO A FEW THINGS ABOUT THIS

689
00:27:27,560 --> 00:27:31,160
SLIDE.

690
00:27:31,160 --> 00:27:33,360
THE FIRST THAT YOU SEE HOW THIS

691
00:27:33,360 --> 00:27:38,600
NUMBER HAS BEEN GOING UP VERY

692
00:27:38,600 --> 00:27:41,480
SIGNIFICANTLY OVER TIME, AND IT

693
00:27:41,480 --> 00:27:45,160
HAS BEEN A VERY STEADY RISE.

694
00:27:45,160 --> 00:27:49,640
THERE WAS A LARGE INCREASE AT

695
00:27:49,640 --> 00:27:51,400
PRETTY MUCH EVERY STAGE.

696
00:27:51,400 --> 00:27:54,000
FOR THE FIRST 10 YEARS, IT

697
00:27:54,000 --> 00:27:56,120
SLOWED DOWN A LITTLE BIT

698
00:27:56,120 --> 00:27:58,320
AFTER -- FOR THE NEXT BUT NOT

699
00:27:58,320 --> 00:28:00,680
VERY MUCH.

700
00:28:00,680 --> 00:28:02,560
A VERY SUBSTANTIAL INCREASE.

701
00:28:02,560 --> 00:28:04,200
THE OTHER THING TO NOTICE ON

702
00:28:04,200 --> 00:28:08,800
THIS SLIDE IS THAT THE NIH

703
00:28:08,800 --> 00:28:12,200
FUNDED PUBLICATIONS ARE A SMALL

704
00:28:12,200 --> 00:28:15,360
SHARE, 7%.

705
00:28:15,360 --> 00:28:16,680
IT'S HARD TO SCALE BECAUSE THE

706
00:28:16,680 --> 00:28:18,480
SCALE IS SO DIFFERENT.

707
00:28:18,480 --> 00:28:21,040
THE NIH PUBLICATIONS DID ALSO

708
00:28:21,040 --> 00:28:22,320
INCREASE OVER TIME.

709
00:28:22,320 --> 00:28:29,160
IN FACT, OVER THAT 10-YEAR TIME

710
00:28:29,160 --> 00:28:31,120
PERIOD, BUT THEIR SHARE HAS

711
00:28:31,120 --> 00:28:33,160
FALLEN A LITTLE BIT IN THE PAST

712
00:28:33,160 --> 00:28:34,800
FIVE YEARS.

713
00:28:34,800 --> 00:28:37,320
AND THE INCREASE HAS NOT BEEN AS

714
00:28:37,320 --> 00:28:43,640
RAPID SINCE 2015.

715
00:28:43,640 --> 00:28:46,360
SO WHERE ARE ARTICLES PUBLISHED

716
00:28:46,360 --> 00:28:48,920
IS A QUESTION THAT WE ALWAYS

717
00:28:48,920 --> 00:28:49,680
GET.

718
00:28:49,680 --> 00:28:51,320
AND THIS PARTICULAR CHART SHOWS

719
00:28:51,320 --> 00:28:54,160
YOU THAT THE TOP 25 MOST

720
00:28:54,160 --> 00:28:57,440
FREQUENT JOURNALS, AND IT ALSO

721
00:28:57,440 --> 00:28:59,120
SHOWS YOU THAT OUT OF THOSE 25

722
00:28:59,120 --> 00:29:03,560
MOST FREQUENT JOURNALS, ONE OF

723
00:29:03,560 --> 00:29:06,320
THEM ARE ON STE FRICTION TRICKS

724
00:29:06,320 --> 00:29:08,160
AND GYNECOLOGY AND

725
00:29:08,160 --> 00:29:09,680
MATERNAL-FETAL MEDICINE-FOCUSED,

726
00:29:09,680 --> 00:29:10,800
THERE WERE ONLY FOUR THAT WERE

727
00:29:10,800 --> 00:29:13,640
NOT, THAT WERE GENERAL ARTICLES

728
00:29:13,640 --> 00:29:21,880
OR IN SOME OTHER AREA.

729
00:29:21,880 --> 00:29:23,840
SO I SAID, WE TOOK THE INDEXING

730
00:29:23,840 --> 00:29:27,200
THAT SCOPUS PROVIDED AND CREATED

731
00:29:27,200 --> 00:29:33,080
ALGORITHMS TO IDENTIFY

732
00:29:33,080 --> 00:29:35,280
LITERATURE AND WE LOOKED AT

733
00:29:35,280 --> 00:29:36,680
SUBTOPICS THAT WERE TYPICALLY

734
00:29:36,680 --> 00:29:38,640
RELATED TO EITHER RISK FACTORS

735
00:29:38,640 --> 00:29:44,880
OR TO OBSTETRIC COMPLICATIONS,

736
00:29:44,880 --> 00:29:49,240
AND THESE SOP TOP ARE THE SUBTOD

737
00:29:49,240 --> 00:29:50,360
HOW THEY CAME OUT.

738
00:29:50,360 --> 00:29:51,880
YOU'LL SEE THAT, UNSURPRISING TO

739
00:29:51,880 --> 00:29:53,840
YOU, I'M SURE, INFECTIOUS

740
00:29:53,840 --> 00:29:55,520
DISEASES WAS THE MOST FREQUENT

741
00:29:55,520 --> 00:29:56,680
RISK FACTOR THAT PEOPLE LOOKED

742
00:29:56,680 --> 00:29:58,680
AT IN STILLBIRTH RESEARCH.

743
00:29:58,680 --> 00:30:00,960
AND THEN THERE WERE A LARGE

744
00:30:00,960 --> 00:30:03,800
NUMBER OF ARTICLES ON PREGNANCY

745
00:30:03,800 --> 00:30:05,680
CONDITIONS AND PREGNANCY

746
00:30:05,680 --> 00:30:08,080
COMPLICATIONS LIKE PREECLAMPSIA,

747
00:30:08,080 --> 00:30:14,200
ET CETERA, ET CETERA.

748
00:30:14,200 --> 00:30:15,960
NOTICE THERE ARE VERY FEW ON

749
00:30:15,960 --> 00:30:17,480
GRIEF AFTER STILLBIRTH, AND

750
00:30:17,480 --> 00:30:20,200
THERE ARE QUITE A BIT ON

751
00:30:20,200 --> 00:30:21,760
SUBSTANCE USE BUT IT IS NOT AS

752
00:30:21,760 --> 00:30:24,920
HIGH AS SOME OF THE OTHER BARS,

753
00:30:24,920 --> 00:30:29,960
AND I'LL TELL NE TELL YOU IN A E

754
00:30:29,960 --> 00:30:34,000
WHY I'M POINTING IT OUT.

755
00:30:34,000 --> 00:30:35,320
SO TO SEE IF THIS PATTERN HELD

756
00:30:35,320 --> 00:30:37,400
FOR THE MOST HIGHLY CITED

757
00:30:37,400 --> 00:30:38,600
PUBLICATIONS, WE TOOK A LOOK AT

758
00:30:38,600 --> 00:30:39,560
THAT AND THAT WAS PRETTY MUCH

759
00:30:39,560 --> 00:30:42,640
THE CASE.

760
00:30:42,640 --> 00:30:44,600
THAT INFECTIOUS DISEASES AND THE

761
00:30:44,600 --> 00:30:46,920
PREGNANCY COMPLICATIONS WERE

762
00:30:46,920 --> 00:30:48,640
ALSO MOST WELL REPRESENTED IN

763
00:30:48,640 --> 00:30:54,760
THAT GROUP.

764
00:30:54,760 --> 00:30:58,320
WHEN WE DECIDED TO LOOK AT NIH

765
00:30:58,320 --> 00:31:00,360
AND NICHD-SUPPORTED

766
00:31:00,360 --> 00:31:01,480
PUBLICATIONS, SO EARLIER AS I

767
00:31:01,480 --> 00:31:05,400
TOLD YOU BEFORE, THE PERCENTAGE

768
00:31:05,400 --> 00:31:06,840
IS FAIRLY LOW BUT WHEN YOU LOOK

769
00:31:06,840 --> 00:31:08,880
AT IT BY SUBTOPIC, THERE'S A

770
00:31:08,880 --> 00:31:09,760
PARTICULAR PATTERN.

771
00:31:09,760 --> 00:31:11,960
SO THIS BROWN LINE HERE IN THE

772
00:31:11,960 --> 00:31:16,120
MIDDLE OF THE SCREEN IS THE 7.2%

773
00:31:16,120 --> 00:31:17,840
THAT'S NIH'S OVERALL SHARE OF

774
00:31:17,840 --> 00:31:18,320
FUNDING.

775
00:31:18,320 --> 00:31:22,440
SO IF THE TOTAL BAF IS ABOVE

776
00:31:22,440 --> 00:31:27,280
BAR IS ABOVETHAT LINE, IT MEANSS

777
00:31:27,280 --> 00:31:29,560
FUNDING MORE THAN ITS TYPICAL

778
00:31:29,560 --> 00:31:33,400
SHARE OF AVERAGE ON ARTICLES FOR

779
00:31:33,400 --> 00:31:34,920
THAT PARTICULAR SUBTOPIC.

780
00:31:34,920 --> 00:31:36,880
AND SIMILARLY IF IT'S BELOW THE

781
00:31:36,880 --> 00:31:40,080
LINE, THERE ARE FEWER.

782
00:31:40,080 --> 00:31:41,800
AND THE BLACK LINE BELOW IT

783
00:31:41,800 --> 00:31:45,960
REPRESENTS NICHD FUNDING, SO IT

784
00:31:45,960 --> 00:31:47,280
IS IN A SIMILAR WAY.

785
00:31:47,280 --> 00:31:53,840
AND YOU SEE HERE THAT PROBABLY

786
00:31:53,840 --> 00:31:55,320
UNSURPRISINGLY -- PREGNANCY

787
00:31:55,320 --> 00:31:56,480
COMPLICATION GROUPS ARE MORE

788
00:31:56,480 --> 00:31:59,080
LIKELY TO BE SUPPORTED BY NIH,

789
00:31:59,080 --> 00:32:02,400
BUT YOU ALSO SEE MATERNAL

790
00:32:02,400 --> 00:32:04,600
SUBSTANCE USE BEING SOMETHING

791
00:32:04,600 --> 00:32:07,200
THAT IS VERY -- IS MORE COMMONLY

792
00:32:07,200 --> 00:32:11,480
SUPPORTED BY NIH THAN YOU WOULD

793
00:32:11,480 --> 00:32:17,040
EXPECT BASED ON THE OVERALL

794
00:32:17,040 --> 00:32:17,480
AVERAGE.

795
00:32:17,480 --> 00:32:18,800
THEN WE DID THE SAME THING

796
00:32:18,800 --> 00:32:22,080
LOOKING AT THOSE TOP CITED

797
00:32:22,080 --> 00:32:22,960
PUBLICATIONS, AND A COUPLE OF

798
00:32:22,960 --> 00:32:26,760
THINGS TO NOTE ABOUT THIS IS

799
00:32:26,760 --> 00:32:30,480
THAT THE NUMBERS ARE VERY MUCH

800
00:32:30,480 --> 00:32:31,040
HIGHER.

801
00:32:31,040 --> 00:32:33,120
SO NIH HAS A LOW SHARE OF THE

802
00:32:33,120 --> 00:32:35,520
TOTAL PUBLICATIONS BUT A MUCH

803
00:32:35,520 --> 00:32:37,040
HIGHER SHARE, A DRAMATICALLY

804
00:32:37,040 --> 00:32:38,600
HIGHER SHARE OF THOSE

805
00:32:38,600 --> 00:32:40,240
PUBLICATIONS THAT ARE MOST

806
00:32:40,240 --> 00:32:43,960
FREQUENTLY CITED.

807
00:32:43,960 --> 00:32:45,600
THE PATTERN IS FAIRLY SIMILAR.

808
00:32:45,600 --> 00:32:50,320
IF A LITTLE BIT LESS STRONG.

809
00:32:50,320 --> 00:32:51,720
AND NOTICE THAT SUBSTANCE USE

810
00:32:51,720 --> 00:32:55,640
NOW DROPS BELOW THAT LINE.

811
00:32:55,640 --> 00:32:58,480
WHICH IS A LITTLE BIT DIFFERENT

812
00:32:58,480 --> 00:33:03,840
THAN THE SLIDE -- SO THAT'S KIND

813
00:33:03,840 --> 00:33:06,160
OF THE OVERALL AGGREGATE DATA

814
00:33:06,160 --> 00:33:07,800
BUT JUST TO GIVE YOU A LITTLE

815
00:33:07,800 --> 00:33:10,960
BIT OF A FEEL FOR WHAT THIS

816
00:33:10,960 --> 00:33:13,920
LITERATURE LOOKS LIKE, WE PUT UP

817
00:33:13,920 --> 00:33:15,480
SOME EXAMPLES HERE AND I'M NOT

818
00:33:15,480 --> 00:33:17,000
GOING TO READ THEM TO YOU

819
00:33:17,000 --> 00:33:20,120
BECAUSE YOU CAN READ SLIDES.

820
00:33:20,120 --> 00:33:22,680
BUT I'LL TELL YOU A LITTLE BIT

821
00:33:22,680 --> 00:33:24,080
ABOUT SOME OF THE INTERESTING

822
00:33:24,080 --> 00:33:26,040
THINGS THAT YOU SEE WHEN YOU

823
00:33:26,040 --> 00:33:30,120
JUST EYEBALL IT.

824
00:33:30,120 --> 00:33:31,720
SO FIRST, THERE ARE FUNDERS ALL

825
00:33:31,720 --> 00:33:34,480
OVER THE WORLD THAT HAVE AN

826
00:33:34,480 --> 00:33:35,600
EXTENSIVE INTEREST IN

827
00:33:35,600 --> 00:33:42,040
STILLBIRTH.

828
00:33:42,040 --> 00:33:43,040
AND FOR INSTANCE THERE'S A LARGE

829
00:33:43,040 --> 00:33:44,240
SLAIR OF PUBLICATIONS COMING OUT

830
00:33:44,240 --> 00:33:46,200
OF THE U.K., AND NOT JUST OUT OF

831
00:33:46,200 --> 00:33:48,360
THE U.K. BUT OUT OF A RANGE OF

832
00:33:48,360 --> 00:33:49,360
DIFFERENT GROUPS AND AGENCIES

833
00:33:49,360 --> 00:33:52,200
WITHIN THE U.K.

834
00:33:52,200 --> 00:33:54,840
THE OTHER THING TO NOTICE IS --

835
00:33:54,840 --> 00:33:56,680
THAT WE NOTICED IS THE WIDE

836
00:33:56,680 --> 00:33:59,200
RANGE OF RISK FACTORS, ALL THE

837
00:33:59,200 --> 00:34:03,240
HECK OVER THE PLACE, AND MANY,

838
00:34:03,240 --> 00:34:05,760
MANY, MANY DIFFERENT TYPES OF

839
00:34:05,760 --> 00:34:13,520
RISK FACTORS AND ASSOCIATIONS.

840
00:34:13,520 --> 00:34:14,720
THE OTHER THING THAT WAS

841
00:34:14,720 --> 00:34:16,120
INTERESTING AND USEFUL TO NOTE

842
00:34:16,120 --> 00:34:17,360
IS THAT ESPECIALLY IN THE

843
00:34:17,360 --> 00:34:20,000
LITERATURE ON PREGNANCY

844
00:34:20,000 --> 00:34:20,960
COMPLICATIONS, THERE WAS A

845
00:34:20,960 --> 00:34:25,480
SIGNIFICANT AMOUNT OF

846
00:34:25,480 --> 00:34:27,080
PRE-CLINICAL WORK IN MICE AND IN

847
00:34:27,080 --> 00:34:28,840
OTHER ANIMAL MODELS, IN

848
00:34:28,840 --> 00:34:31,720
NON-HUMAN PRIMATES.

849
00:34:31,720 --> 00:34:38,360
THERE WAS QUITE A BIT OF THAT.

850
00:34:38,360 --> 00:34:39,800
AGAIN, THIS IS WHERE WE SHIFT

851
00:34:39,800 --> 00:34:41,560
GEARS, AND SO NOW WHEN WE TALK

852
00:34:41,560 --> 00:34:47,200
ABOUT GRANTS, WE'RE TALKING --

853
00:34:47,200 --> 00:34:53,800
BY THE GRANT APPLICATION -- AND

854
00:34:53,800 --> 00:34:55,320
WHEN WE THOUGHT ABOUT HOW WE

855
00:34:55,320 --> 00:35:00,040
WERE GOING TO THINK ABOUT

856
00:35:00,040 --> 00:35:01,880
STILLBIRTH FUNDING IN

857
00:35:01,880 --> 00:35:02,720
CHARACTERIZING GRANTS, WE CAME

858
00:35:02,720 --> 00:35:04,160
UP WITH THIS TIERED CONCEPT THAT

859
00:35:04,160 --> 00:35:08,360
OUR TEAM USED TO TRY AND MAKE

860
00:35:08,360 --> 00:35:12,800
THINGS CLEARER TO US, AND SO WE

861
00:35:12,800 --> 00:35:14,360
DIVIDED STILLBIRTH RESEARCH INTO

862
00:35:14,360 --> 00:35:16,560
THESE DIFFERENT TIERS, SO THE

863
00:35:16,560 --> 00:35:18,320
SMALLEST GROUP, THAT DARK CIRCLE

864
00:35:18,320 --> 00:35:27,040
IN THE MIDDLE OF THIS DIAGRAM,

865
00:35:27,040 --> 00:35:28,680
ARE THOSE RESEARCH STUDIES WHERE

866
00:35:28,680 --> 00:35:31,880
STILLBIRTH IS THE PRIMARY FOCUS,

867
00:35:31,880 --> 00:35:33,480
REALLY INTENSELY FOCUSED ON

868
00:35:33,480 --> 00:35:34,360
STILLBIRTH, AND THAT'S THE

869
00:35:34,360 --> 00:35:39,400
INTENT OF THE STUDY.

870
00:35:39,400 --> 00:35:40,800
THERE'S A LARGER GROUP IN THAT

871
00:35:40,800 --> 00:35:44,640
SORT OF MIDDLE BLUE WHERE

872
00:35:44,640 --> 00:35:47,360
STILLBIRTH IS BEING STUDIED IN

873
00:35:47,360 --> 00:35:51,400
CONJUNCTION WITH OTHER OUTCOMES.

874
00:35:51,400 --> 00:35:53,280
SO IT'S ONE OF THE OUTCOME

875
00:35:53,280 --> 00:35:56,120
MEASURES.

876
00:35:56,120 --> 00:35:58,640
IT'S NOT THE SOLE MEASURE, IT

877
00:35:58,640 --> 00:36:00,200
MAY NOT EVEN BE THE PRIMARY

878
00:36:00,200 --> 00:36:01,400
MEASURE, BUT IT IS BEING

879
00:36:01,400 --> 00:36:04,680
MEASURED SEPARATELY, IT IS BEING

880
00:36:04,680 --> 00:36:05,960
FOCUSED ON, IT'S JUST THAT THE

881
00:36:05,960 --> 00:36:08,080
STUDY IS LOOKING AT A WIDE

882
00:36:08,080 --> 00:36:08,400
RANGE.

883
00:36:08,400 --> 00:36:09,920
SO THERE'S A LOT OF STUDIES IN

884
00:36:09,920 --> 00:36:11,880
THIS GROUP THAT ARE LOOKING AT A

885
00:36:11,880 --> 00:36:15,040
RANGE OF WHAT IS WHAT THEY CALL

886
00:36:15,040 --> 00:36:18,000
ADVERSE OUTCOMES, SO THEY'RE

887
00:36:18,000 --> 00:36:20,600
LOOKING AT STILLBIRTH AND

888
00:36:20,600 --> 00:36:24,160
PREECLAMPSIA, STILLBIRTH AND

889
00:36:24,160 --> 00:36:25,360
PLACENTAL ISSUES.

890
00:36:25,360 --> 00:36:30,840
THEY'RE LOOKING AT STILLBIRTH

891
00:36:30,840 --> 00:36:32,320
AND LOW BIRTH WEIGHT.

892
00:36:32,320 --> 00:36:34,200
SO THERE'S A RANGE OF THINGS.

893
00:36:34,200 --> 00:36:37,280
BUT THEY STILL ARE LOOKING AT

894
00:36:37,280 --> 00:36:43,920
STILLBIRTH AS ITS OWN OUTCOME.

895
00:36:43,920 --> 00:36:45,560
THE FINAL TIER, THAT OUTER

896
00:36:45,560 --> 00:36:47,760
CIRCLE, IS WHAT WE FOR LACK OF A

897
00:36:47,760 --> 00:36:50,960
BETTER TERM CALLED

898
00:36:50,960 --> 00:36:51,680
STILLBIRTH-ADJACENT.

899
00:36:51,680 --> 00:36:52,560
THESE ARE THINGS WHERE THE

900
00:36:52,560 --> 00:36:53,560
RESEARCH CLEARLY HAS

901
00:36:53,560 --> 00:36:55,400
IMPLICATIONS FOR STILLBIRTH.

902
00:36:55,400 --> 00:36:57,800
BUT THEY'RE NOT MEASURING

903
00:36:57,800 --> 00:36:59,880
STILLBIRTH AS A SEPARATE

904
00:36:59,880 --> 00:37:00,440
OUTCOME.

905
00:37:00,440 --> 00:37:02,760
IT MIGHT BE A COMPOSITE OUTCOME,

906
00:37:02,760 --> 00:37:08,440
IT MIGHT BE SOMETHING WHERE

907
00:37:08,440 --> 00:37:09,400
THERE'S IMPLICATIONS FOR

908
00:37:09,400 --> 00:37:10,720
STILLBIRTH, IT MIGHT BE PART OF

909
00:37:10,720 --> 00:37:13,560
THE MOTIVATION FOR DOING THE

910
00:37:13,560 --> 00:37:15,440
RESEARCH, BUT IT'S NOT FOCUSED

911
00:37:15,440 --> 00:37:18,600
ON STILLBIRTH AS AN -- AS A

912
00:37:18,600 --> 00:37:22,240
DISTINCT OUTCOME.

913
00:37:22,240 --> 00:37:23,640
AND SO IT'S A VERY HARD CIRCLE

914
00:37:23,640 --> 00:37:27,560
TO TRY AND GET OUR ARMS AROUND

915
00:37:27,560 --> 00:37:31,760
FOR US, BECAUSE IF THE TEXT --

916
00:37:31,760 --> 00:37:35,240
SOMETHING MAY BE VERY IMPORTANT

917
00:37:35,240 --> 00:37:36,440
FOR STILLBIRTH RESEARCH BUT IF

918
00:37:36,440 --> 00:37:37,720
THE TEXT DOESN'T SAY IT, IT MAY

919
00:37:37,720 --> 00:37:42,560
BE HARD TO -- SO THERE MAY BE

920
00:37:42,560 --> 00:37:44,200
SOME RELEVANT STUDIES THAT DON'T

921
00:37:44,200 --> 00:37:45,400
DIRECTLY MENTION IT, THAT YOU

922
00:37:45,400 --> 00:37:47,160
MISS ALL TOGETHER.

923
00:37:47,160 --> 00:37:50,000
SO THAT CIRCLE IS VERY HARD TO

924
00:37:50,000 --> 00:37:56,960
KIND OF GRASP INITY ENTIRETY.

925
00:37:56,960 --> 00:38:01,720
SO HOW DID WE DEAL WITH THIS?

926
00:38:01,720 --> 00:38:02,920
NIH'S OFFICIAL CATEGORICAL

927
00:38:02,920 --> 00:38:04,000
REPORT, STILLBIRTH IS INCLUDED

928
00:38:04,000 --> 00:38:09,360
WITHIN THE PREGNANCY CATEGORY.

929
00:38:09,360 --> 00:38:11,560
AND SO WE USED NATURAL LANGUAGE

930
00:38:11,560 --> 00:38:12,520
PROCESSING TOOLS COMBINED WITH

931
00:38:12,520 --> 00:38:16,120
MANUAL CODING, AND I'LL EXPLAIN

932
00:38:16,120 --> 00:38:19,440
WHY, TO IDENTIFY THOSE GRANTS IN

933
00:38:19,440 --> 00:38:22,920
TIER 1 AND TIER 2.

934
00:38:22,920 --> 00:38:25,680
AND SO WE HAVE -- LUCKILY FOR

935
00:38:25,680 --> 00:38:29,560
US, WE HAVE WITHIN NICHD A VERY

936
00:38:29,560 --> 00:38:30,680
DETAILED CODING SYSTEM WHERE WE

937
00:38:30,680 --> 00:38:34,320
COULD PULL OUT GRANTS RELATED TO

938
00:38:34,320 --> 00:38:35,280
STILLBIRTH, BUT WE DON'T HAVE

939
00:38:35,280 --> 00:38:36,920
THAT FOR ALL OF NIH.

940
00:38:36,920 --> 00:38:42,480
SO WE USE THIS NATURAL LANGUAGE

941
00:38:42,480 --> 00:38:43,800
PROCESSING TOOLS TO COME UP WITH

942
00:38:43,800 --> 00:38:45,240
A SET OF GRANTS RELATED TO

943
00:38:45,240 --> 00:38:46,320
STILLBIRTH, AND THEN WE COMPARED

944
00:38:46,320 --> 00:38:49,320
THAT BACK TO OUR GOLD STANDARD

945
00:38:49,320 --> 00:38:51,680
FOR THE NICHD GRANTS.

946
00:38:51,680 --> 00:38:56,160
AND WHAT WE FOUND WAS THAT IN

947
00:38:56,160 --> 00:38:58,080
ORDER TO GET THE PROCESS -- IN

948
00:38:58,080 --> 00:39:00,320
ORDER TO GET THE AUTOMATED TOOL

949
00:39:00,320 --> 00:39:03,480
TO PULL IN EVERYTHING THAT YOU

950
00:39:03,480 --> 00:39:08,320
KNOW IS STILLBIRTH, YOU WIND UP

951
00:39:08,320 --> 00:39:11,600
WITH A SET WITH A LOT OF FALSE

952
00:39:11,600 --> 00:39:12,120
POSITIVES IN IT.

953
00:39:12,120 --> 00:39:13,680
SO WE TOOK THAT SET AND USED

954
00:39:13,680 --> 00:39:15,440
MANUAL CODING TO ELIMINATE THE

955
00:39:15,440 --> 00:39:17,400
FALSE POSITIVES, TO VALIDATE THE

956
00:39:17,400 --> 00:39:18,920
GRANTS AND DETERMINE WHAT TIER A

957
00:39:18,920 --> 00:39:19,800
GRANT WAS.

958
00:39:19,800 --> 00:39:22,520
AND SO I DO NEED TO POINT OUT

959
00:39:22,520 --> 00:39:28,120
THESE DATA ARE UNOFFICIAL.

960
00:39:28,120 --> 00:39:29,960
THEY DID NOT GO THROUGH THE

961
00:39:29,960 --> 00:39:31,520
NIH-WIDE PROCESS THAT'S USED FOR

962
00:39:31,520 --> 00:39:34,120
PUBLIC REPORTING FOR SCIENTIFIC

963
00:39:34,120 --> 00:39:35,560
TOPICS, AND THEY WEREN'T

964
00:39:35,560 --> 00:39:38,720
VALIDATED BY ALL THE OTHER ICs

965
00:39:38,720 --> 00:39:39,800
THAT HAVE GRANTS INCLUDED IN

966
00:39:39,800 --> 00:39:40,480
THIS SET.

967
00:39:40,480 --> 00:39:42,520
SO THIS IS AN UNOFFICIAL

968
00:39:42,520 --> 00:39:48,640
ANALYSIS IN THAT WAY.

969
00:39:48,640 --> 00:39:50,240
ONCE WE DID THAT, WE LOOKED

970
00:39:50,240 --> 00:39:52,200
WITHIN THE NIH-PROPERTIED

971
00:39:52,200 --> 00:39:53,800
CATEGORY TO SEE WHAT WE COULD DO

972
00:39:53,800 --> 00:39:58,080
TO IDENTIFY A SUBSET OF TIER 3.

973
00:39:58,080 --> 00:40:00,680
AND WE COUNTED EACH PROJECT ONCE

974
00:40:00,680 --> 00:40:04,320
FOR THE TOTAL SET AND FOR TRENDS

975
00:40:04,320 --> 00:40:05,920
IN EVERY YEAR IN WHICH IT HAD

976
00:40:05,920 --> 00:40:07,800
FUNDING.

977
00:40:07,800 --> 00:40:10,200
WE ALSO EXCLUDED INSTITUTIONAL

978
00:40:10,200 --> 00:40:10,760
TRAINING GRANTS.

979
00:40:10,760 --> 00:40:13,960
WE INCLUDED INDIVIDUAL GRANTS SO

980
00:40:13,960 --> 00:40:17,160
INDIVIDUAL Ks, K08s, K23s

981
00:40:17,160 --> 00:40:20,760
ARE IN, BUT BROADLY CONSTRUCTED

982
00:40:20,760 --> 00:40:23,360
T32 PROGRAMS, WE DID NOT

983
00:40:23,360 --> 00:40:27,200
INCLUDE.

984
00:40:27,200 --> 00:40:28,720
SO ONCE WE DID ALL THAT, THIS IS

985
00:40:28,720 --> 00:40:31,120
WHERE WE ENDED UP, AND A COUPLE

986
00:40:31,120 --> 00:40:32,240
OF KEY POINTS WITH THE SETS THAT

987
00:40:32,240 --> 00:40:33,240
WE WOUND UP WITH.

988
00:40:33,240 --> 00:40:37,400
THE FIRST THING THAT WE NOTICED

989
00:40:37,400 --> 00:40:39,680
WAS THAT THE SET WAS

990
00:40:39,680 --> 00:40:42,120
OVERWHELMINGLY TIER 2 PROJECTS.

991
00:40:42,120 --> 00:40:46,480
SO STILLBIRTHS IN NIH'S

992
00:40:46,480 --> 00:40:48,440
PORTFOLIO IS MOST OFTEN STUDIED

993
00:40:48,440 --> 00:40:49,800
IN CONJUNCTION WITH OTHER

994
00:40:49,800 --> 00:40:50,880
PREGNANCY OUTCOMES RATHER THAN

995
00:40:50,880 --> 00:40:56,000
BY ITSELF.

996
00:40:56,000 --> 00:40:57,240
ABOUT TWO THIRDS -- ABOUT THREE

997
00:40:57,240 --> 00:40:58,520
QUARTERS OF THE GRANTS THAT WERE

998
00:40:58,520 --> 00:41:02,680
IN THAT SET WERE FUNDED BY

999
00:41:02,680 --> 00:41:04,080
NICHD, AND JUST FOR CONTEXT,

1000
00:41:04,080 --> 00:41:07,160
THAT'S A VERY HIGH NUMBER FOR AN

1001
00:41:07,160 --> 00:41:08,040
NIH-REPORTED TOPIC.

1002
00:41:08,040 --> 00:41:12,200
SO IT REALLY IS VERY

1003
00:41:12,200 --> 00:41:13,680
NICHD-CENTRIC WHEN WE GOT RID OF

1004
00:41:13,680 --> 00:41:15,160
THE FALSE POSITIVES.

1005
00:41:15,160 --> 00:41:19,200
AS WE SAID BEFORE ABOUT HALF OF

1006
00:41:19,200 --> 00:41:20,720
THOSE GRANTS RESULTED IN

1007
00:41:20,720 --> 00:41:24,240
STILLBIRTH PUBLICATIONS.

1008
00:41:24,240 --> 00:41:25,880
ABOUT A THIRD OF TIER

1009
00:41:25,880 --> 00:41:26,880
1 PUBLICATIONS, HOWEVER, DID

1010
00:41:26,880 --> 00:41:29,280
NOT.

1011
00:41:29,280 --> 00:41:30,600
SO THAT WAS ALSO INTERESTING.

1012
00:41:30,600 --> 00:41:34,640
THERE WAS A DIFFERENCE BETWEEN

1013
00:41:34,640 --> 00:41:36,160
THE TWO, BUT IT WAS NOT AS LARGE

1014
00:41:36,160 --> 00:41:38,040
AS MIGHT BE EXPECTED AT THE

1015
00:41:38,040 --> 00:41:38,360
BEGINNING.

1016
00:41:38,360 --> 00:41:43,040
AND THEN THE OTHER PIECE TO NOTE

1017
00:41:43,040 --> 00:41:44,480
WAS THAT THE CENTERS AND

1018
00:41:44,480 --> 00:41:47,440
NETWORKS PLAYED A MAJOR ROLE IN

1019
00:41:47,440 --> 00:41:48,880
THE ENTIRE SET.

1020
00:41:48,880 --> 00:41:54,000
THERE WAS A LOT OF PROJECTS THAT

1021
00:41:54,000 --> 00:41:55,600
WERE FROM CENTERS, NETWORKS,

1022
00:41:55,600 --> 00:42:01,560
LARGE COHORT STUDIES.

1023
00:42:01,560 --> 00:42:03,640
SO IN THE INTRODUCTION,

1024
00:42:03,640 --> 00:42:04,720
DR. BIANCHI MENTIONED THE

1025
00:42:04,720 --> 00:42:05,400
STILLBIRTH NETWORK.

1026
00:42:05,400 --> 00:42:06,440
THERE HAVE BEEN, IN THE TIME

1027
00:42:06,440 --> 00:42:09,960
PERIOD THAT WE STUDIED, TWO

1028
00:42:09,960 --> 00:42:14,280
MAJOR TIER 1 MEANING FOCUSED

1029
00:42:14,280 --> 00:42:15,760
EXCLUSIVELY OR NEARLY

1030
00:42:15,760 --> 00:42:18,720
EXCLUSIVELY ON STILLBIRTH CENTER

1031
00:42:18,720 --> 00:42:20,760
AND NETWORK PROGRAMS.

1032
00:42:20,760 --> 00:42:23,200
SO THERE WAS THE STILLBIRTH

1033
00:42:23,200 --> 00:42:24,160
COLLABORATIVE RESEARCH NETWORK

1034
00:42:24,160 --> 00:42:26,920
AND THE PRENATAL ALCOHOL SIDS

1035
00:42:26,920 --> 00:42:30,560
AND STILLBIRTH NETWORK.

1036
00:42:30,560 --> 00:42:34,000
AND THE INTERESTING THING ABOUT

1037
00:42:34,000 --> 00:42:37,000
THIS RESEARCH NETWORK WAS,

1038
00:42:37,000 --> 00:42:39,840
AGAIN, THAT I WAS VERY SURPRISED

1039
00:42:39,840 --> 00:42:42,240
WHEN I FOUND THAT BETWEEN A

1040
00:42:42,240 --> 00:42:43,680
THIRD AND 40% OF THE

1041
00:42:43,680 --> 00:42:46,840
PUBLICATIONS FROM THAT NETWORK

1042
00:42:46,840 --> 00:42:49,080
CAME MORE THAN 10 YEARS AFTER IT

1043
00:42:49,080 --> 00:42:54,360
WAS FUNDED.

1044
00:42:54,360 --> 00:42:56,360
SO ALTHOUGH THIS NETWORK ENDED

1045
00:42:56,360 --> 00:43:02,800
FUNDING OVER A DECADE AGO, OVER

1046
00:43:02,800 --> 00:43:04,560
A THIRD OF THE PUBLICATIONS FROM

1047
00:43:04,560 --> 00:43:09,360
THAT NETWORK HAVE COME OUT ONLY

1048
00:43:09,360 --> 00:43:10,440
IN THE LAST THREE YEARS.

1049
00:43:10,440 --> 00:43:14,440
SO THIS WAS REALLY A TESTAMENT

1050
00:43:14,440 --> 00:43:16,160
TO THE IMPORTANCE OF KEEPING

1051
00:43:16,160 --> 00:43:18,120
DATA AND SHARING DATA AND HAVING

1052
00:43:18,120 --> 00:43:24,600
IT AVAILABLE FOR ADDITIONAL WORK

1053
00:43:24,600 --> 00:43:26,800
IN, IN SOME CASE, MANY YEARS

1054
00:43:26,800 --> 00:43:27,440
LATER.

1055
00:43:27,440 --> 00:43:29,760
THE RESULTS OF THE STILLBIRTH

1056
00:43:29,760 --> 00:43:31,280
NETWORK FOCUSED PRIMARILY ON

1057
00:43:31,280 --> 00:43:34,760
CAUSES OF STILLBIRTH, AND IT WAS

1058
00:43:34,760 --> 00:43:39,720
ABLE TOLL CONFIRM A LOT OF WHAT

1059
00:43:39,720 --> 00:43:40,680
FOLKS HAD THOUGHT ABOUT

1060
00:43:40,680 --> 00:43:41,560
STILLBIRTH BUT HAD NOT REALLY

1061
00:43:41,560 --> 00:43:43,640
HAD THE EVIDENCE FOR.

1062
00:43:43,640 --> 00:43:46,600
THE NETWORK ALSO CAME OUT WITH A

1063
00:43:46,600 --> 00:43:48,800
IMPORTANT AND VERY HIGHLY CITED

1064
00:43:48,800 --> 00:43:50,360
PUBLICATION ABOUT CLASSIFICATION

1065
00:43:50,360 --> 00:43:55,360
FOR CAUSES OF STILLBIRTH.

1066
00:43:55,360 --> 00:43:57,480
THE PAST NETWORK WAS FOCUSED

1067
00:43:57,480 --> 00:44:01,520
PRIMARILY ON ALCOHOL USE, AND IT

1068
00:44:01,520 --> 00:44:04,560
HAD -- PRIMARY OUTCOMES, ONE

1069
00:44:04,560 --> 00:44:05,840
SIDS AND ONE ON STILLBIRTH.

1070
00:44:05,840 --> 00:44:12,040
AND AGAIN, THESE ARE JUST A

1071
00:44:12,040 --> 00:44:13,200
SMALL -- OF SOME OF THE FINDINGS

1072
00:44:13,200 --> 00:44:15,960
FROM THE NETWORKS TO NOTE FROM

1073
00:44:15,960 --> 00:44:21,800
THE STILLBIRTH RESEARCH NETWORK,

1074
00:44:21,800 --> 00:44:23,520
THE INCREASING EMPHASIS ON

1075
00:44:23,520 --> 00:44:26,920
GENETIC CAUSES, AND HOW TO

1076
00:44:26,920 --> 00:44:36,760
IDENTIFY NEW GENETIC CAUSES,

1077
00:44:36,760 --> 00:44:39,120
FROM THE PASS NETWORK, ONE OF

1078
00:44:39,120 --> 00:44:41,520
THE THINGS THE PASS NETWORK DID

1079
00:44:41,520 --> 00:44:42,800
WAS, THE RESULTS DEFINITELY

1080
00:44:42,800 --> 00:44:46,000
CONFIRMED THE ROLE OF SUBSTANCE

1081
00:44:46,000 --> 00:44:47,320
USE IN STILLBIRTH.

1082
00:44:47,320 --> 00:44:49,040
BUT IT ALSO, WHEN YOU LOOKED AT

1083
00:44:49,040 --> 00:44:50,680
SOME OF THE DESCRIPTIVE

1084
00:44:50,680 --> 00:44:51,880
FINDINGS, SOME OF THE

1085
00:44:51,880 --> 00:44:57,600
DESCRIPTIVE FINDINGS WERE REALLY

1086
00:44:57,600 --> 00:44:58,680
INTERESTING ABOUT THE PATTERNS

1087
00:44:58,680 --> 00:45:01,200
OF USE IN SUBSTANCE USE AMONGST

1088
00:45:01,200 --> 00:45:06,040
PREGNANT WOMEN.

1089
00:45:06,040 --> 00:45:10,680
THEN NICHD ALSO, SINCE THOSE TWO

1090
00:45:10,680 --> 00:45:12,600
NETWORKS, MANY OF THE STILLBIRTH

1091
00:45:12,600 --> 00:45:15,360
PUBLICATIONS AND STILLBIRTH

1092
00:45:15,360 --> 00:45:17,280
STUDIES HAVE BEEN FUNDED UNDER

1093
00:45:17,280 --> 00:45:21,240
BROADER RESEARCH NETWORKS LIKE

1094
00:45:21,240 --> 00:45:22,120
THE GLOBAL NETWORK.

1095
00:45:22,120 --> 00:45:25,520
THERE'S MORE EXAMPLES OF THAT.

1096
00:45:25,520 --> 00:45:29,360
THE NOLIPEROUS STUDY CALLED NEW

1097
00:45:29,360 --> 00:45:31,560
MOM TO BE HAS ALSO YIELDED SOME

1098
00:45:31,560 --> 00:45:33,200
NEW PUBLICATIONS ON STILLBIRTH.

1099
00:45:33,200 --> 00:45:34,720
THESE TWO NETWORKS AND IN

1100
00:45:34,720 --> 00:45:36,280
PARTICULAR THE GLOBAL NETWORK

1101
00:45:36,280 --> 00:45:38,800
HAVE HAD SEVERAL STUDIES THAT

1102
00:45:38,800 --> 00:45:40,960
HAVE FOCUSED ON STILLBIRTH OR

1103
00:45:40,960 --> 00:45:45,720
INCLUDED IT AS A MEASURE.

1104
00:45:45,720 --> 00:45:47,880
SO WHAT DO THE OTHER ICs DO,

1105
00:45:47,880 --> 00:45:49,880
WHAT'S IN THAT OTHER 24%?

1106
00:45:49,880 --> 00:45:52,480
THERE'S A SIGNIFICANT PORTFOLIO

1107
00:45:52,480 --> 00:45:55,360
IN NIEHS LOOKING AT

1108
00:45:55,360 --> 00:45:57,000
ENVIRONMENTAL FACTORS.

1109
00:45:57,000 --> 00:46:02,880
THE VAST MAJORITY OF THIS IS

1110
00:46:02,880 --> 00:46:05,240
GRANTS THAT LOOK AT A RANGE OF

1111
00:46:05,240 --> 00:46:06,880
OUT COME, NOT ENTIRELY

1112
00:46:06,880 --> 00:46:08,720
STILLBIRTH, BUT THERE ARE A

1113
00:46:08,720 --> 00:46:13,000
LARGE NUMBER OF THESE, THEY DO

1114
00:46:13,000 --> 00:46:14,080
MEASURE STILLBIRTH SEPARATELY

1115
00:46:14,080 --> 00:46:16,600
AND THEY DO ACCOUNT FOR IT.

1116
00:46:16,600 --> 00:46:19,000
IT'S NOT -- COMPOSITE.

1117
00:46:19,000 --> 00:46:21,640
COMPLICATED GRIEF IS STUDIED

1118
00:46:21,640 --> 00:46:23,080
LARGELY IN NIMH.

1119
00:46:23,080 --> 00:46:26,680
THERE ARE SEVERAL PROJECTS ON

1120
00:46:26,680 --> 00:46:28,160
THAT WITHIN THE NATIONAL

1121
00:46:28,160 --> 00:46:29,440
INSTITUTE OF MENTAL HEALTH, AND

1122
00:46:29,440 --> 00:46:31,040
THERE'S ALSO THIS INTERESTING

1123
00:46:31,040 --> 00:46:32,840
PROGRAM FROM COMPLEMENTARY

1124
00:46:32,840 --> 00:46:39,440
MEDICINE AND INTEGRATIVE HEALTH

1125
00:46:39,440 --> 00:46:45,400
ABOUT STILL LOOKING AT

1126
00:46:45,400 --> 00:46:51,680
COMPLICATIONED GRIEF, PTSD --

1127
00:46:51,680 --> 00:46:53,080
THAT'S FUNDED BY THE NATIONAL

1128
00:46:53,080 --> 00:46:57,800
INSTITUTE ON DRUG ABUSE.

1129
00:46:57,800 --> 00:47:00,080
OTHER INSTITUTES INCLUDING

1130
00:47:00,080 --> 00:47:02,040
ARTHRITIS MUSCULOSKELETAL,

1131
00:47:02,040 --> 00:47:04,240
HEART, LUNG AND BLOOD,

1132
00:47:04,240 --> 00:47:06,000
NEUROLOGY, THERE'S A NUMBER OF

1133
00:47:06,000 --> 00:47:12,680
PROJECTS THAT LOOK AT THE IMPACT

1134
00:47:12,680 --> 00:47:13,680
OF CHRONIC CONDITIONS THAT WOMEN

1135
00:47:13,680 --> 00:47:15,080
MAY HAVE BEFORE THEY BECOME

1136
00:47:15,080 --> 00:47:18,160
PREGNANT OR DURING PREGNANCY AND

1137
00:47:18,160 --> 00:47:19,800
HOW THAT AFFECTS THE RISK FOR

1138
00:47:19,800 --> 00:47:20,120
STILLBIRTH.

1139
00:47:20,120 --> 00:47:22,000
THERE'S A SIGNIFICANT NUMBER OF

1140
00:47:22,000 --> 00:47:22,480
THOSE.

1141
00:47:22,480 --> 00:47:24,400
THEY'RE SCATTERED ACROSS

1142
00:47:24,400 --> 00:47:25,520
DIFFERENT INSTITUTES, DEPENDING

1143
00:47:25,520 --> 00:47:32,560
ON EACH INSTITUTE'S SCIENTIFIC

1144
00:47:32,560 --> 00:47:33,000
FOCUS.

1145
00:47:33,000 --> 00:47:34,280
SO AS I SAID, WE FOUND IT HARD

1146
00:47:34,280 --> 00:47:35,600
TO GET OUR ARMS AROUND THIS

1147
00:47:35,600 --> 00:47:39,880
WHOLE IDEA OF THAT THIRD TIER OF

1148
00:47:39,880 --> 00:47:42,280
PROJECTS, SO WE LOOKED FOR SOME

1149
00:47:42,280 --> 00:47:45,880
EXAMPLES WITHIN THE PREGNANCY

1150
00:47:45,880 --> 00:47:48,240
CATEGORY, AND WE LOOKED AT

1151
00:47:48,240 --> 00:47:51,280
PROJECTS RELATED TO RISK FACTORS

1152
00:47:51,280 --> 00:47:52,920
FOR STILLBIRTH WITHIN THE

1153
00:47:52,920 --> 00:47:57,400
PREGNANCY CATEGORY.

1154
00:47:57,400 --> 00:47:59,040
AND TO GIVE YOU AN IDEA OF SOME

1155
00:47:59,040 --> 00:48:00,360
OF THESE PROJECT, WHICH AGAIN

1156
00:48:00,360 --> 00:48:03,000
ARE NOT FOCUSED DIRECTLY ON

1157
00:48:03,000 --> 00:48:04,000
STILLBIRTH, BUT YOU SEE THAT

1158
00:48:04,000 --> 00:48:10,000
THEY GROW OVER TIME.

1159
00:48:10,000 --> 00:48:14,160
AND YOU CAN SEE THE INCREASE IN

1160
00:48:14,160 --> 00:48:15,400
SUBSTANCE ABUSE LARGELY COMING

1161
00:48:15,400 --> 00:48:22,520
FROM OPIOID, RESEARCH ON OPIOID

1162
00:48:22,520 --> 00:48:24,680
ADDICTION/MISUSE AND ALSO

1163
00:48:24,680 --> 00:48:33,000
INFECTIOUS -- AND PRETERM

1164
00:48:33,000 --> 00:48:33,360
GROWTH.

1165
00:48:33,360 --> 00:48:34,960
SO THIS IS A SMALL PART OF WHAT

1166
00:48:34,960 --> 00:48:37,840
THAT TIER 3 CONSISTS OF, BUT

1167
00:48:37,840 --> 00:48:40,800
WHEN YOU ADD ALL THAT UP, EVEN

1168
00:48:40,800 --> 00:48:43,320
IN THOSE FOUR SUBCATEGORIES, YOU

1169
00:48:43,320 --> 00:48:49,560
CAN SEE HOW TIER 3 JUST TOTALLY

1170
00:48:49,560 --> 00:48:51,280
DWARFS TIER 1 AND TIER 2 IN

1171
00:48:51,280 --> 00:48:52,080
TERMS OF SIZE.

1172
00:48:52,080 --> 00:48:53,600
AND THAT EXPLAINS WHY THAT

1173
00:48:53,600 --> 00:48:55,720
YELLOW AND BLACK STRIPED BOX IS

1174
00:48:55,720 --> 00:48:58,880
SO BIG.

1175
00:48:58,880 --> 00:49:02,560
BECAUSE A LOT OF THESE GRANTS,

1176
00:49:02,560 --> 00:49:05,320
THEY DON'T START OUT FOCUSING ON

1177
00:49:05,320 --> 00:49:07,760
STILLBIRTH BUT THEY DO

1178
00:49:07,760 --> 00:49:09,400
CONTRIBUTE FINDINGS SPECIFICALLY

1179
00:49:09,400 --> 00:49:12,880
ON STILLBIRTH TO THE LITERATURE.

1180
00:49:12,880 --> 00:49:16,720
AND WHAT'S INTERESTING IS THAT

1181
00:49:16,720 --> 00:49:18,480
THAT SET OF GRANTS HAS REALLY

1182
00:49:18,480 --> 00:49:19,920
TAKEN OFF AND GROWN

1183
00:49:19,920 --> 00:49:22,440
SUBSTANTIALLY OVER TIME, WHEREAS

1184
00:49:22,440 --> 00:49:23,960
THE MORE FOCUSED GRANTS HAVE

1185
00:49:23,960 --> 00:49:27,480
REMAINED PRETTY STEADY.

1186
00:49:27,480 --> 00:49:31,640
SO ARE THESE PUBLICATIONS FROM

1187
00:49:31,640 --> 00:49:34,240
TIER 3 JUST THINGS THAT REALLY

1188
00:49:34,240 --> 00:49:35,720
AREN'T MAJOR CONTRIBUTORS, ARE

1189
00:49:35,720 --> 00:49:37,560
THEY JUST INCIDENTAL?

1190
00:49:37,560 --> 00:49:38,640
WELL, NO.

1191
00:49:38,640 --> 00:49:42,400
IF YOU LOOK AT THE TOP 300 CITED

1192
00:49:42,400 --> 00:49:44,480
PUBLICATIONS, A LOT OF THEM COME

1193
00:49:44,480 --> 00:49:46,200
FROM TIER 3 PROJECTS, AND SO

1194
00:49:46,200 --> 00:49:48,520
HERE ARE JUST A FEW EXAMPLES.

1195
00:49:48,520 --> 00:49:50,840
BUT YOU CAN SEE SOME OF THEM

1196
00:49:50,840 --> 00:49:52,440
DEAL WITH ENVIRONMENTAL

1197
00:49:52,440 --> 00:50:00,760
EXPOSURE, SOME OF THEM --

1198
00:50:00,760 --> 00:50:02,080
CONDITIONS, AND THERE'S A VERY

1199
00:50:02,080 --> 00:50:04,400
WIDE RANGE OF THINGS.

1200
00:50:04,400 --> 00:50:06,320
A GOOD EXAMPLE, I THINK THE LAST

1201
00:50:06,320 --> 00:50:08,680
ONE ON THIS SLIDE, WHICH IS

1202
00:50:08,680 --> 00:50:10,120
THERE'S A LARGE COHORT STUDY

1203
00:50:10,120 --> 00:50:13,400
THAT'S FUNDED LOOKING AT YOUNG

1204
00:50:13,400 --> 00:50:15,480
PEOPLE WHO ACQUIRE TYPE

1205
00:50:15,480 --> 00:50:22,000
2 DIABETES AT EARLY AGES.

1206
00:50:22,000 --> 00:50:27,360
THEY LOOKED AT STILLBIRTH RISK

1207
00:50:27,360 --> 00:50:29,880
IN THAT SUBPOPULATION, SO THAT

1208
00:50:29,880 --> 00:50:32,440
WAS A REALLY INTERESTING THING

1209
00:50:32,440 --> 00:50:33,840
WHERE YOU WOULDN'T NECESSARILY

1210
00:50:33,840 --> 00:50:35,040
HAVE ANTICIPATED THAT THAT WOULD

1211
00:50:35,040 --> 00:50:44,920
BE A SO-CALLED STILLBIRTH GRANT.

1212
00:50:44,920 --> 00:50:47,000
SO JUST TO SUMMARIZE HERE, THE

1213
00:50:47,000 --> 00:50:48,360
TOTAL PUBLICATIONS, REGARDLESS

1214
00:50:48,360 --> 00:50:49,720
OF FUNDING SOURCE, HAVE BEEN

1215
00:50:49,720 --> 00:50:51,920
GROWING QUITE A BIT, AND IT DOES

1216
00:50:51,920 --> 00:50:53,600
VARY BY SUBGROUP WITH THE

1217
00:50:53,600 --> 00:50:55,080
LARGEST SHARE BEING ON

1218
00:50:55,080 --> 00:50:56,760
INFECTIOUS DISEASES AS RISK

1219
00:50:56,760 --> 00:50:59,280
FACTORS.

1220
00:50:59,280 --> 00:51:01,040
THE NIH SHARE OF THE LITERATURE

1221
00:51:01,040 --> 00:51:02,320
IS SMALL BUT HIGHER WHEN YOU

1222
00:51:02,320 --> 00:51:05,280
LOOK AT HIGHLY CITED

1223
00:51:05,280 --> 00:51:06,920
PUBLICATIONS, AND OBSTETRICAL

1224
00:51:06,920 --> 00:51:11,640
CONDITIONS.

1225
00:51:11,640 --> 00:51:12,960
MOST OF THE LITERATURE SUPPORTED

1226
00:51:12,960 --> 00:51:14,880
BY NIH IS LINKED TO PROJECTS

1227
00:51:14,880 --> 00:51:16,520
THAT DO NOT -- YOU WOULD NOT

1228
00:51:16,520 --> 00:51:18,160
INITIALLY PICK OUT AS HAVING A

1229
00:51:18,160 --> 00:51:24,720
STILLBIRTH FOCUS.

1230
00:51:24,720 --> 00:51:27,680
THAT SET OF GRANTS THAT DOES NOT

1231
00:51:27,680 --> 00:51:28,840
NECESSARILY HAVE A STILLBIRTH

1232
00:51:28,840 --> 00:51:33,040
FOCUS HAS GROWN SUBSTANTIALLY

1233
00:51:33,040 --> 00:51:33,720
OVER TIME.

1234
00:51:33,720 --> 00:51:34,920
SO ITS SHARE HAS GROWN OVER

1235
00:51:34,920 --> 00:51:39,640
TIME.

1236
00:51:39,640 --> 00:51:40,720
THE OTHER THING TO REALLY NOTE

1237
00:51:40,720 --> 00:51:43,040
IS THAT MOST OF THESE STILLBIRTH

1238
00:51:43,040 --> 00:51:44,800
PROJECTS FOCUS ON A RANGE OF

1239
00:51:44,800 --> 00:51:47,200
PREGNANCY OUTCOMES RATHER THAN

1240
00:51:47,200 --> 00:51:51,720
EXCLUSIVELY STILLBIRTH.

1241
00:51:51,720 --> 00:51:53,160
SO WITH THAT, I'M JUST GOING TO

1242
00:51:53,160 --> 00:51:54,760
STOP AND SAY THANK YOU, AND I

1243
00:51:54,760 --> 00:51:58,040
REALLY NEED TO ACKNOWLEDGE THE

1244
00:51:58,040 --> 00:51:59,160
TEAM THAT PUT THIS DATA

1245
00:51:59,160 --> 00:51:59,600
TOGETHER.

1246
00:51:59,600 --> 00:52:01,680
I GET THE PLEASURE OF TELLING

1247
00:52:01,680 --> 00:52:05,280
YOU ABOUT IT, BUT THERE WERE A

1248
00:52:05,280 --> 00:52:06,720
LOT OF -- THERE'S A LOT OF

1249
00:52:06,720 --> 00:52:11,560
EFFORT THAT WENT THROUGH THIS

1250
00:52:11,560 --> 00:52:12,080
ANALYSIS.

1251
00:52:12,080 --> 00:52:15,800
SO WE APPRECIATE YOUR ATTENTION,

1252
00:52:15,800 --> 00:52:17,720
AND IF YOU HAVE QUESTIONS OR

1253
00:52:17,720 --> 00:52:20,000
COMMENTS, WE'D REALLY LIKE TO

1254
00:52:20,000 --> 00:52:21,120
LOOK AT THEM.

1255
00:52:21,120 --> 00:52:27,320
I'M GOING TO PULL UP THE CHAT

1256
00:52:27,320 --> 00:52:29,320
AND MAYBE MONICA CAN HELP ME

1257
00:52:29,320 --> 00:52:31,360
LOOK AT SOME OF THESE COMMENTS.

1258
00:52:31,360 --> 00:52:35,440
>>THERE'S A LONG CHAT,
SARAH,

1259
00:52:35,440 --> 00:52:37,240
SO YOUR DATA INSPIRED A LOT OF

1260
00:52:37,240 --> 00:52:37,480
COMMENTS.

1261
00:52:37,480 --> 00:52:37,880
>>GOOD!

1262
00:52:37,880 --> 00:52:46,200
>>LET ME -- G DR. GLAVIN,
BEFOE

1263
00:52:46,200 --> 00:52:47,840
WE GET TO QUESTIONS IN THE CHAT

1264
00:52:47,840 --> 00:52:49,080
BOX OR QUESTIONS FOR YOU, I JUST

1265
00:52:49,080 --> 00:52:50,720
WANTED TO ACKNOWLEDGE INPUT FROM

1266
00:52:50,720 --> 00:52:51,800
PARENTS AND PARENT GROUPS IN THE

1267
00:52:51,800 --> 00:52:56,720
CHAT BOX.

1268
00:52:56,720 --> 00:52:57,960
TO SAY IN MY LONG ASSOCIATION

1269
00:52:57,960 --> 00:52:59,920
WITH THE NICHD, INPUT FROM

1270
00:52:59,920 --> 00:53:02,000
PARENTS AND FAMILIES HAS ALWAYS

1271
00:53:02,000 --> 00:53:05,600
BEEN GIVEN VERY HIGH IMPORTANCE,

1272
00:53:05,600 --> 00:53:07,640
AND I CONTINUE TO SEE THAT AS

1273
00:53:07,640 --> 00:53:10,240
NOW A MEMBER OF THE NICHD

1274
00:53:10,240 --> 00:53:12,000
ADVISORY COUNCIL, WHERE

1275
00:53:12,000 --> 00:53:14,720
DR. BIANCHI ALWAYS INVITES

1276
00:53:14,720 --> 00:53:17,280
PARENTS AND FAMILIES TO SPEAK TO

1277
00:53:17,280 --> 00:53:18,560
THE ADVISORY COUNCIL.

1278
00:53:18,560 --> 00:53:23,840
SO WE WILL EXPLORE ANY AND ALL

1279
00:53:23,840 --> 00:53:25,040
OPPORTUNITIES FOR INCORPORATING

1280
00:53:25,040 --> 00:53:29,440
INPUT FROM PARENTS, AND I WILL

1281
00:53:29,440 --> 00:53:31,600
CONSULT WITH DR. BIANCHI AND THE

1282
00:53:31,600 --> 00:53:33,360
NICHD ON HOW BEST TO DO THAT.

1283
00:53:33,360 --> 00:53:35,800
SO I JUST WANTED TO MAKE SURE

1284
00:53:35,800 --> 00:53:37,360
THAT PARENTS ATTENDING THIS

1285
00:53:37,360 --> 00:53:40,800
MEETING KNOW THAT THEIR INPUT

1286
00:53:40,800 --> 00:53:45,560
HAS BEEN ACKNOWLEDGED.

1287
00:53:45,560 --> 00:53:46,800
ADD THEN MONICA, WOULD YOU LIKE

1288
00:53:46,800 --> 00:53:47,840
TO HANDLE THE QUESTIONS OR WOULD

1289
00:53:47,840 --> 00:53:52,400
YOU LIKE ME TO READ THEM OUT FOR

1290
00:53:52,400 --> 00:53:52,680
DR. GLAVIN?

1291
00:53:52,680 --> 00:53:54,120
>>I MEAN, I WOULD BE
HAPPY TO

1292
00:53:54,120 --> 00:53:55,480
DO IT TOGETHER.

1293
00:53:55,480 --> 00:53:57,320
I PUT DOWN SOME OF THEM THAT

1294
00:53:57,320 --> 00:53:58,960
I'VE ALREADY SEEN IN THE CHAT.

1295
00:53:58,960 --> 00:54:03,360
I KNOW THERE WAS SOME INTEREST

1296
00:54:03,360 --> 00:54:10,040
IN UNIN UNDERSTANDING MORE ABOUT

1297
00:54:10,040 --> 00:54:11,800
THE -- TRYING TO UNDERSTAND MORE

1298
00:54:11,800 --> 00:54:14,320
ABOUT WHAT WAS YOUR TIER 1, HOW

1299
00:54:14,320 --> 00:54:17,840
MANY STUDIES WERE FOCUSING ON

1300
00:54:17,840 --> 00:54:20,680
STILLBIRTH PREVENTION VERSUS

1301
00:54:20,680 --> 00:54:22,240
SUPPORT, LIKE IN GRIEF AFTER

1302
00:54:22,240 --> 00:54:24,520
PREGNANCY, I'M NOT SURE I KNOW

1303
00:54:24,520 --> 00:54:27,640
HOW DIFFICULT IT IS TO LOOK AT

1304
00:54:27,640 --> 00:54:29,440
THIS, HAVING A STILLBIRTH, NOT

1305
00:54:29,440 --> 00:54:32,760
THE OUTCOME OR MORE INCLUDED IN

1306
00:54:32,760 --> 00:54:34,120
ADVERSE PREGNANCY INCOMES SO I

1307
00:54:34,120 --> 00:54:37,720
KNOW IT'S NOT EASY TO ADDRESS IT

1308
00:54:37,720 --> 00:54:39,480
BUT MAYBE YOU COULD DO

1309
00:54:39,480 --> 00:54:42,440
SOMETHING, TIER 1, TIER 2 AND

1310
00:54:42,440 --> 00:54:43,120
TIER 3.

1311
00:54:43,120 --> 00:54:43,640
THANK YOU.

1312
00:54:43,640 --> 00:54:46,800
>>GRIEF AND TREATMENT
AFTER

1313
00:54:46,800 --> 00:54:47,920
STILLBIRTH IS ALMOST CERTAINLY

1314
00:54:47,920 --> 00:54:52,760
GOING TO WIND UP IN TIER 1.

1315
00:54:52,760 --> 00:54:54,720
BECAUSE THAT'S REALLY

1316
00:54:54,720 --> 00:54:55,480
STILLBIRTH-FOCUSED.

1317
00:54:55,480 --> 00:54:57,360
THERE WAS NOT AS MUCH OF -- AS

1318
00:54:57,360 --> 00:55:00,040
MANY OF THOSE PROJECTS AS WE

1319
00:55:00,040 --> 00:55:05,160
MIGHT LIKE.

1320
00:55:05,160 --> 00:55:07,480
MOST OF WHAT THERE WAS THERE WAS

1321
00:55:07,480 --> 00:55:08,920
FUNDED BY THE NATIONAL INSTITUTE

1322
00:55:08,920 --> 00:55:09,920
ON MENTAL HEALTH, BUT THAT'S

1323
00:55:09,920 --> 00:55:13,160
SOMETHING WE REALLY MIGHT WANT

1324
00:55:13,160 --> 00:55:14,720
TO CONSIDER LOOKING INTO MORE

1325
00:55:14,720 --> 00:55:16,520
DEEPLY, IS THAT PARTICULAR AREA.

1326
00:55:16,520 --> 00:55:19,680
THERE WAS NOT A LOT OF PUBLISHED

1327
00:55:19,680 --> 00:55:22,720
LITERATURE ON THAT EITHER

1328
00:55:22,720 --> 00:55:26,240
COMPARED TO OTHER TOPICS, AND

1329
00:55:26,240 --> 00:55:29,560
THAT'S -- SO THAT WAS SAYING

1330
00:55:29,560 --> 00:55:34,320
WHEN WE LOOKED, THAT SEEMED TO

1331
00:55:34,320 --> 00:55:35,560
BE SOMEWHAT OF A GAP THAT WE

1332
00:55:35,560 --> 00:55:43,040
OUGHT TO THINK ABOUT.

1333
00:55:43,040 --> 00:55:44,560
>>I BELIEVE ANOTHER
QUESTION

1334
00:55:44,560 --> 00:55:46,320
WAS ABOUT IF YOU HAD A CHANCE TO

1335
00:55:46,320 --> 00:55:52,640
DIVIDE THEM BETWEEN -- IN THE

1336
00:55:52,640 --> 00:55:54,120
LITERATURE BETWEEN THE RESEARCH

1337
00:55:54,120 --> 00:55:58,600
OF PREVENTABLE AND NOT

1338
00:55:58,600 --> 00:55:58,880
PREVENTABLE?

1339
00:55:58,880 --> 00:56:00,640
>>NO, WE REALLY DIDN'T.

1340
00:56:00,640 --> 00:56:03,880
AND THAT WOULD BE REALLY HARD.

1341
00:56:03,880 --> 00:56:06,080
WE'D HAVE TO COME UP WITH A GOOD

1342
00:56:06,080 --> 00:56:10,680
WAY OF CLASSIFYING WHAT IS

1343
00:56:10,680 --> 00:56:13,920
PREVENTABLE AND WHAT ISN'T.

1344
00:56:13,920 --> 00:56:15,880
YOU CAN GET A HINT OF IF YOU

1345
00:56:15,880 --> 00:56:18,680
LOOK AT THE DIFFERENCE BETWEEN

1346
00:56:18,680 --> 00:56:19,960
SOME OF THE PREGNANCY

1347
00:56:19,960 --> 00:56:21,400
COMPLICATIONS AND INFECTIOUS

1348
00:56:21,400 --> 00:56:22,400
DISEASES AND GENETICS.

1349
00:56:22,400 --> 00:56:29,840
YOU CAN KIND OF GET A HINT AT

1350
00:56:29,840 --> 00:56:30,720
IT.

1351
00:56:30,720 --> 00:56:32,040
BUT WE WEREN'T REALLY ABLE TO

1352
00:56:32,040 --> 00:56:34,040
BREAK THAT DOWN QUITE AS MUCH AS

1353
00:56:34,040 --> 00:56:34,560
WE WOULD LIKE.

1354
00:56:34,560 --> 00:56:37,000
>>SARAH, THERE IS ALSO A

1355
00:56:37,000 --> 00:56:38,520
QUESTION FROM DR. BARFIELD

1356
00:56:38,520 --> 00:56:40,200
AROUND SOCIAL DETERMINANT OF

1357
00:56:40,200 --> 00:56:41,960
HEALTH, AND PARTICULARLY STRESS

1358
00:56:41,960 --> 00:56:46,440
DURING PREGNANCY AS A CAUSE OF

1359
00:56:46,440 --> 00:56:47,520
STILLBIRTH.

1360
00:56:47,520 --> 00:56:50,920
COULD YOU COMMENT ON WHETHER OR

1361
00:56:50,920 --> 00:56:52,280
NOT YOU MIGHT BE ABLE TO DIG A

1362
00:56:52,280 --> 00:56:54,560
LITTLE DEEPER INTO THAT?

1363
00:56:54,560 --> 00:56:56,840
>>YEAH.

1364
00:56:56,840 --> 00:56:58,000
THAT WAS ONE OF THOSE TOPICS

1365
00:56:58,000 --> 00:56:59,320
THAT WE REALLY WOULD HAVE LIKED

1366
00:56:59,320 --> 00:57:03,040
TO HAVE DIVED INTO MORE, AND IT

1367
00:57:03,040 --> 00:57:06,280
DID NOT PICK UP WELL WITH THE

1368
00:57:06,280 --> 00:57:08,840
AUTOMATED SYSTEM, SO DOWN TO

1369
00:57:08,840 --> 00:57:11,480
THAT MORE WOULD REQUIRE MORE

1370
00:57:11,480 --> 00:57:13,680
HAND CODING AND IDENTIFICATION

1371
00:57:13,680 --> 00:57:15,640
THAT WE JUST SIMPLY DID NOT HAVE

1372
00:57:15,640 --> 00:57:17,200
THE TIME TO DO.

1373
00:57:17,200 --> 00:57:18,520
I KNOW IT'S THERE.

1374
00:57:18,520 --> 00:57:19,400
I KNOW IT'S SOMETHING THAT

1375
00:57:19,400 --> 00:57:22,440
PEOPLE ARE REALLY LOOKING AT.

1376
00:57:22,440 --> 00:57:24,880
WE SAW IT WHEN WE EYEBALLED IT.

1377
00:57:24,880 --> 00:57:26,840
TO TRY AND QUANTIFY IT, WE DID

1378
00:57:26,840 --> 00:57:29,160
NOT GET THAT FAR.

1379
00:57:29,160 --> 00:57:30,280
BUT WE KNOW THAT'S AN IMPORTANT

1380
00:57:30,280 --> 00:57:33,360
TOPIC.

1381
00:57:33,360 --> 00:57:37,480
AND IT'S DISCUSSED FAIRLY

1382
00:57:37,480 --> 00:57:38,600
FREQUENTLY IN COMBINATION WITH

1383
00:57:38,600 --> 00:57:42,360
HEALTH DISPARITIES, BUT IT WAS

1384
00:57:42,360 --> 00:57:45,640
NOT ENTIRELY A HEALTH

1385
00:57:45,640 --> 00:57:49,080
DISPARITIES ICIAL EU, AND SO

1386
00:57:49,080 --> 00:57:50,240
THAT WOULD BE SOMETHING WE WOULD

1387
00:57:50,240 --> 00:57:52,160
HAVE TO TRY AND LOOK AT THOSE

1388
00:57:52,160 --> 00:57:53,120
TWO THINGS SEPARATELY.

1389
00:57:53,120 --> 00:57:54,720
AND LAST BUT NOT LEAST, ONE OF

1390
00:57:54,720 --> 00:57:56,520
THE STUDIES OUT OF THE GLOBAL

1391
00:57:56,520 --> 00:57:59,080
NETWORK LOOKED AT SOCIOECONOMIC

1392
00:57:59,080 --> 00:58:01,040
STATUS WITHIN LOW AND MIDDLE

1393
00:58:01,040 --> 00:58:02,600
INCOME COUNTRIES AND FOUND A

1394
00:58:02,600 --> 00:58:04,400
STRONG ASSOCIATION THERE.

1395
00:58:04,400 --> 00:58:07,000
I KNOW THAT'S AN IMPORTANT THING

1396
00:58:07,000 --> 00:58:09,840
TO LOOK AT.

1397
00:58:09,840 --> 00:58:11,920
>>ONE MORE QUESTION.

1398
00:58:11,920 --> 00:58:14,640
I'M TRYING TO GO THROUGH THE

1399
00:58:14,640 --> 00:58:17,400
CHAT, AND THANK YOU, DR. JAIN,

1400
00:58:17,400 --> 00:58:20,080
AND DR. REDDY, AND EVERYONE

1401
00:58:20,080 --> 00:58:20,360
ELSE.

1402
00:58:20,360 --> 00:58:22,320
I KNOW THERE IS SOMEONE WITH A

1403
00:58:22,320 --> 00:58:23,000
RAISED HAND.

1404
00:58:23,000 --> 00:58:26,680
LET ME LOOK AT THIS QUESTION.

1405
00:58:26,680 --> 00:58:28,400
WHICH OTHER INSTITUTE BESIDES

1406
00:58:28,400 --> 00:58:30,600
NICHD HAVE BEEN LEADING FUNDERS

1407
00:58:30,600 --> 00:58:32,960
FOR GRANT THAT YOU HAVE SHOWN

1408
00:58:32,960 --> 00:58:34,040
REGARDING THE TOPIC?

1409
00:58:34,040 --> 00:58:36,000
ARE YOU ABLE TO KNOW THAT?

1410
00:58:36,000 --> 00:58:39,000
PROBABLY NOT AT THIS TIME MAYBE?

1411
00:58:39,000 --> 00:58:42,920
>>SO THE EXAMPLES THAT
WERE IN

1412
00:58:42,920 --> 00:58:44,360
THE SLIDES REALLY DO ILLUSTRATE

1413
00:58:44,360 --> 00:58:45,440
THAT.

1414
00:58:45,440 --> 00:58:50,080
THE NIEHS HAS A VERY -- HAS A

1415
00:58:50,080 --> 00:58:53,800
VERY SIGNIFICANT NUMBER.

1416
00:58:53,800 --> 00:58:59,160
THE OTHERS ARE MORE SCATTERED.

1417
00:58:59,160 --> 00:59:00,800
YOU HAVE A FEW GRANTS FROM A LOT

1418
00:59:00,800 --> 00:59:02,040
OF DIFFERENT INSTITUTES MAKING

1419
00:59:02,040 --> 00:59:05,320
UP THAT 24% WITH REALLY THE

1420
00:59:05,320 --> 00:59:10,360
EXCEPTION OF NIEHS.

1421
00:59:10,360 --> 00:59:11,960
WE CAN RUN THAT FAIRLY EASILY,

1422
00:59:11,960 --> 00:59:19,360
SO I'LL TRY AND PUT THAT

1423
00:59:19,360 --> 00:59:19,640
TOGETHER.

1424
00:59:19,640 --> 00:59:21,560
>>DR. EMILY PRICE, NOT
SURE IF

1425
00:59:21,560 --> 00:59:24,280
SHE WANTS TO ASK A QUESTION,

1426
00:59:24,280 --> 00:59:26,400
SHE'S HAD HER HAND RAISED FOR

1427
00:59:26,400 --> 00:59:26,840
SOME TIME.

1428
00:59:26,840 --> 00:59:28,600
>>I'M WITH A NON-PROFIT

1429
00:59:28,600 --> 00:59:29,840
ORGANIZATION CALLED HEALTHY

1430
00:59:29,840 --> 00:59:34,720
BIRTHDAY INGE T INC THAT CREATEE

1431
00:59:34,720 --> 00:59:35,240
PUBLIC HEALTH CAMPAIGN.

1432
00:59:35,240 --> 00:59:36,440
I WANT TO THANK YOU FOR YOUR

1433
00:59:36,440 --> 00:59:37,440
TIME TODAY AND THE WORK YOU'RE

1434
00:59:37,440 --> 00:59:37,960
PUTTING INTO THIS.

1435
00:59:37,960 --> 00:59:42,080
AND I RESPECTFULLY WANTED TO

1436
00:59:42,080 --> 00:59:43,320
ASK, WHAT IS THE DEFINITION THAT

1437
00:59:43,320 --> 00:59:45,360
IS BEING USED FOR "RARE"?

1438
00:59:45,360 --> 00:59:46,680
WHEN I LOOK AT THE DEFINITION OF

1439
00:59:46,680 --> 00:59:48,360
RARE, IT SAYS AN EVENT,

1440
00:59:48,360 --> 00:59:50,200
SITUATION OR CONDITION THAT IS

1441
00:59:50,200 --> 00:59:52,280
NOT OCCURRING VERY OFTEN.

1442
00:59:52,280 --> 00:59:56,680
IT'S SPARSE, IT'S SCARCE.

1443
00:59:56,680 --> 00:59:58,640
AND I THINK STILLBIRTH

1444
00:59:58,640 --> 00:59:59,960
PREVENTION ORGANIZATIONS WOULD

1445
00:59:59,960 --> 01:00:01,160
RESPECTFULLY DISAGREE THAT

1446
01:00:01,160 --> 01:00:03,720
STILLBIRTH IS RARE, THAT 65

1447
01:00:03,720 --> 01:00:05,520
BABIES DYING OF STILLBIRTH EVERY

1448
01:00:05,520 --> 01:00:08,240
DAY DOESN'T FEEL RARE TO US, AND

1449
01:00:08,240 --> 01:00:12,520
SO I'M TRULY CURIOUS HOW YOU

1450
01:00:12,520 --> 01:00:14,520
DEFINE THE WORD "RARE."

1451
01:00:14,520 --> 01:00:20,000
>>SO WHEN I PUT THE
SLIDES

1452
01:00:20,000 --> 01:00:21,080
TOGETHER I WAS TRYING TO BE

1453
01:00:21,080 --> 01:00:22,280
SENSITIVE TO THAT BECAUSE

1454
01:00:22,280 --> 01:00:29,400
OBVIOUSLY ONE STILLBIRTH IS TOO

1455
01:00:29,400 --> 01:00:29,680
MANY.

1456
01:00:29,680 --> 01:00:31,480
SO IT IS RARE ONLY IN THE SENSE

1457
01:00:31,480 --> 01:00:36,200
THAT DR. BIANCHI TALKED ABOUT IN

1458
01:00:36,200 --> 01:00:38,600
HER INTRODUCTORY REMARKS WHERE

1459
01:00:38,600 --> 01:00:42,480
FROM A STATISTICAL POINT OF

1460
01:00:42,480 --> 01:00:43,920
VIEW, WHAT IT MEANS IS THAT IF

1461
01:00:43,920 --> 01:00:45,120
YOU'RE DOING RESEARCH IN

1462
01:00:45,120 --> 01:00:46,440
STILLBIRTH, YOU HAVE TO BE

1463
01:00:46,440 --> 01:00:50,280
CAREFUL TO HAVE A LARGE ENOUGH

1464
01:00:50,280 --> 01:00:52,720
GROUP OF PARTICIPANTS THAT YOU

1465
01:00:52,720 --> 01:00:56,760
CAN REALLY SAY SOMETHING

1466
01:00:56,760 --> 01:00:57,080
STATISTICALLY.

1467
01:00:57,080 --> 01:01:04,800
SO IT IS NOT RARE -- UNIMPORTANT

1468
01:01:04,800 --> 01:01:06,000
BY ANY STRETCH OF THE

1469
01:01:06,000 --> 01:01:07,200
IMAGINATION AND I DON'T THINK

1470
01:01:07,200 --> 01:01:09,160
ANY OF US BELIEVE THAT.

1471
01:01:09,160 --> 01:01:11,160
WHAT WE WANTED TO MAKE THE

1472
01:01:11,160 --> 01:01:14,480
POINT, THOUGH, IS THAT FROM A

1473
01:01:14,480 --> 01:01:16,320
RESEARCH POINT OF VIEW, WE NEED

1474
01:01:16,320 --> 01:01:21,000
TO BE SURE THAT WHEN WE DO

1475
01:01:21,000 --> 01:01:22,600
RESEARCH ON THIS TOPIC, THAT WE

1476
01:01:22,600 --> 01:01:24,800
DO IT ON A LARGE ENOUGH SCALE

1477
01:01:24,800 --> 01:01:28,960
THAT WE CAN COME UP WITH RESULTS

1478
01:01:28,960 --> 01:01:30,200
THAT WILL BE USEFUL FOR

1479
01:01:30,200 --> 01:01:31,720
PREVENTION.

1480
01:01:31,720 --> 01:01:36,680
AND THAT'S THE REASON FOR

1481
01:01:36,680 --> 01:01:37,640
CONSIDERING THAT CONCEPT.

1482
01:01:37,640 --> 01:01:42,800
DOES THAT MAKE ACCEPTS?

1483
01:01:42,800 --> 01:01:43,920
 MAKE SENSE?

1484
01:01:43,920 --> 01:01:45,760
>>SARAH, THANK YOU FOR

1485
01:01:45,760 --> 01:01:47,200
EXPLAINING THAT.

1486
01:01:47,200 --> 01:01:51,840
IT ACTUALLY IS A VERY IMPORTANT

1487
01:01:51,840 --> 01:01:52,720
POINT, BECAUSE WHEN YOU'RE

1488
01:01:52,720 --> 01:01:53,920
TALKING ABOUT AN INCIDENCE OF

1489
01:01:53,920 --> 01:02:00,160
LESS THAN 1%, IN THE SCIENTIFIC

1490
01:02:00,160 --> 01:02:01,720
APPROACH, IT MAY BE A SMALL

1491
01:02:01,720 --> 01:02:04,240
NUMBER, BUT FOR THE FAMILY

1492
01:02:04,240 --> 01:02:09,920
IMPACTED, THAT ONE IS A VERY BIG

1493
01:02:09,920 --> 01:02:10,720
NUMBER.

1494
01:02:10,720 --> 01:02:13,280
SO ONE MORE QUESTION FROM THE

1495
01:02:13,280 --> 01:02:17,720
PARENT GROUP, SARAH.

1496
01:02:17,720 --> 01:02:19,800
AND THAT STILLBIRTH AND

1497
01:02:19,800 --> 01:02:21,600
PREGNANCY OFTEN OCCURS WITH NO

1498
01:02:21,600 --> 01:02:22,960
KNOWN RISK FACTORS.

1499
01:02:22,960 --> 01:02:23,680
>>YES.

1500
01:02:23,680 --> 01:02:27,080
>>HOW MUCH DO WE KNOW
ABOUT

1501
01:02:27,080 --> 01:02:27,960
THAT?

1502
01:02:27,960 --> 01:02:30,640
AND PARTICULARLY THE FACT THAT

1503
01:02:30,640 --> 01:02:33,920
SUBSTANCE ABUSE IS SELDOM A

1504
01:02:33,920 --> 01:02:38,000
CAUSATIVE FACTOR?

1505
01:02:38,000 --> 01:02:42,160
>>SO I'M GOING TO GO BACK
TO

1506
01:02:42,160 --> 01:02:45,240
SOMETHING, HERE WE GO.

1507
01:02:45,240 --> 01:02:48,080
SO IF YOU DON'T MIND MY

1508
01:02:48,080 --> 01:02:49,200
RESHARING THE SCREEN FOR JUST A

1509
01:02:49,200 --> 01:02:52,560
SECOND.

1510
01:02:52,560 --> 01:03:01,880
I'M GOING TO PULL SOMETHING UP.

1511
01:03:01,880 --> 01:03:04,080
HERE.

1512
01:03:04,080 --> 01:03:04,520
SORRY.

1513
01:03:04,520 --> 01:03:09,200
I'LL HAVE TO SCROLL THROUGH TO

1514
01:03:09,200 --> 01:03:10,840
GET THERE.

1515
01:03:10,840 --> 01:03:15,200
BUT ONE OF THE RESULTS FROM THE

1516
01:03:15,200 --> 01:03:16,400
STILLBIRTH NETWORK, THAT THEY

1517
01:03:16,400 --> 01:03:18,240
WERE ABLE TO FIND A POSSIBLE OR

1518
01:03:18,240 --> 01:03:20,800
PROBABLE CAUSE OF DEATH IN 77%

1519
01:03:20,800 --> 01:03:28,800
OF CASES, BUT THAT LEAVES 23%

1520
01:03:28,800 --> 01:03:29,760
WHERE THERE WAS NO WAY OF

1521
01:03:29,760 --> 01:03:30,120
KNOWING.

1522
01:03:30,120 --> 01:03:35,080
SOME OF THOSE MAY BE FROM

1523
01:03:35,080 --> 01:03:36,920
GENETIC CAUSES THAT ARE JUST NOT

1524
01:03:36,920 --> 01:03:38,000
KNOWN YET.

1525
01:03:38,000 --> 01:03:40,800
SO THE ANSWER IS NOT ENOUGH.

1526
01:03:40,800 --> 01:03:42,360
WE DON'T KNOW ENOUGH.

1527
01:03:42,360 --> 01:03:46,920
AND I'LL DEFER TO YOU AND DR. R

1528
01:03:46,920 --> 01:03:54,640
EDR. REDDY WHO ARE THE REAL

1529
01:03:54,640 --> 01:03:55,840
EXPERTS ON THAT BUT CLEARLY THE

1530
01:03:55,840 --> 01:03:57,720
ANSWER IS WE DON'T KNOW ENOUGH.

1531
01:03:57,720 --> 01:03:58,960
>>I CAN HELP ANSWER THAT.

1532
01:03:58,960 --> 01:04:00,400
THE STILLBIRTH COLLABORATIVE

1533
01:04:00,400 --> 01:04:01,360
RESEARCH NETWORK, ONE OF THE

1534
01:04:01,360 --> 01:04:03,360
GOALS WAS TO REALLY UNDERSTAND

1535
01:04:03,360 --> 01:04:05,040
WHAT ARE THE RISK FACTORS FOR A

1536
01:04:05,040 --> 01:04:06,880
WOMAN HAVING A STILLBIRTH

1537
01:04:06,880 --> 01:04:10,520
COMPARED TO A CONTROL POPULATION

1538
01:04:10,520 --> 01:04:13,000
OF WOMEN HAVING LIVE BIRTHS.

1539
01:04:13,000 --> 01:04:15,040
SO WE IDENTIFIED RISK FACTORS

1540
01:04:15,040 --> 01:04:16,440
ASSOCIATED WITH STILLBIRTH, AND

1541
01:04:16,440 --> 01:04:18,840
YOU'RE RIGHT, SUBSTANCE USE WAS

1542
01:04:18,840 --> 01:04:21,760
NOT EVEN A COMMON FACTOR AT ALL.

1543
01:04:21,760 --> 01:04:23,280
IT WAS LOW PREVALENCE.

1544
01:04:23,280 --> 01:04:26,720
SO THEN THE GOAL WAS TO TAKE

1545
01:04:26,720 --> 01:04:30,240
THESE RISK FACTORS AND PUT THEM

1546
01:04:30,240 --> 01:04:31,960
ALL TOGETHER TO SEE IF WE COULD

1547
01:04:31,960 --> 01:04:33,800
FIGURE OUT WHICH WOMEN ARE AT

1548
01:04:33,800 --> 01:04:35,760
THE HIGHEST RISK FOR STILLBIRTH.

1549
01:04:35,760 --> 01:04:38,480
SO WE TOOK ALL THE RISK FACTORS

1550
01:04:38,480 --> 01:04:40,680
WE FOUND AND WE STUDIED OVER 500

1551
01:04:40,680 --> 01:04:42,480
FAMILIES THAT HAD SUFFERED A

1552
01:04:42,480 --> 01:04:43,880
STILLBIRTH.

1553
01:04:43,880 --> 01:04:45,240
UNFORTUNATELY, EVEN TAKING THOSE

1554
01:04:45,240 --> 01:04:47,880
FACTORS, SO TAKING MATERNAL AGE

1555
01:04:47,880 --> 01:04:49,760
AND PREGNANCY HISTORY AND ALL

1556
01:04:49,760 --> 01:04:55,160
THOSE FACTORS, EVEN BASELINE

1557
01:04:55,160 --> 01:04:58,240
DISEASES, WE COULD NOT -- WE

1558
01:04:58,240 --> 01:05:02,160
PREDICTED ONLY LIKE 19% OF THE

1559
01:05:02,160 --> 01:05:02,600
STILLBIRTHS.

1560
01:05:02,600 --> 01:05:03,720
SO REALLY, THAT'S A PROBLEM THAT

1561
01:05:03,720 --> 01:05:09,760
WE CANNOT IDENTIFY EARLY ON

1562
01:05:09,760 --> 01:05:10,760
WHO'S AT HIGHEST RISK.

1563
01:05:10,760 --> 01:05:12,080
SO THAT'S AN ISSUE PEOPLE HAVE

1564
01:05:12,080 --> 01:05:12,760
BEEN WORKING ON.

1565
01:05:12,760 --> 01:05:14,960
BY THE STILLBIRTH COLLABORATIVE

1566
01:05:14,960 --> 01:05:16,400
RESEARCH NETWORK PUBLISHED THAT

1567
01:05:16,400 --> 01:05:17,760
PAPER IN JAMA AND IT'S CORRECT

1568
01:05:17,760 --> 01:05:21,000
IN TERMS OF NOT BEING ABLE TO

1569
01:05:21,000 --> 01:05:23,240
PREDICT WHO'S AT RISK FOR

1570
01:05:23,240 --> 01:05:29,240
STILLBIRTH EARLY ON.

1571
01:05:29,240 --> 01:05:30,920
>>MONICA, THERE ARE MANY
MORE

1572
01:05:30,920 --> 01:05:34,880
COMMENTS IN THE CHAT BOX RELATED

1573
01:05:34,880 --> 01:05:40,320
TO THE FACT THAT STILLBIRTH IS

1574
01:05:40,320 --> 01:05:41,440
NOT RARE.

1575
01:05:41,440 --> 01:05:43,920
AND I WANT TO RE-EMPHASIZE THE

1576
01:05:43,920 --> 01:05:46,360
POINT DR. BIANCHI MADE IN HER

1577
01:05:46,360 --> 01:05:49,560
INTRODUCTORY REMARKS, THAT

1578
01:05:49,560 --> 01:05:51,600
21,000 STILLBIRTHS IN THE UNITED

1579
01:05:51,600 --> 01:05:54,760
STATES EACH YEAR IS A HUGE

1580
01:05:54,760 --> 01:05:56,200
PROBLEM.

1581
01:05:56,200 --> 01:06:01,440
SOMETHING THAT WE, AS A

1582
01:06:01,440 --> 01:06:02,440
COMMUNITY, PERINATAL PEOPLE

1583
01:06:02,440 --> 01:06:04,120
INTERESTED IN THE HEALTH OF

1584
01:06:04,120 --> 01:06:06,640
MOTHERS AND CHILDREN ARE VERY

1585
01:06:06,640 --> 01:06:07,080
CONCERNED ABOUT.

1586
01:06:07,080 --> 01:06:11,920
SO PLEASE BE REASSURED THAT THAT

1587
01:06:11,920 --> 01:06:15,440
POINT HAS BEEN TAKEN INTO OUR

1588
01:06:15,440 --> 01:06:22,640
CONSIDERATION HERE.

1589
01:06:22,640 --> 01:06:24,080
>>I'VE BEEN READING ALL
THE

1590
01:06:24,080 --> 01:06:26,200
CHAT AND I'VE ASKED THE PEOPLE

1591
01:06:26,200 --> 01:06:27,840
WHO ARE RUNNING THE TECHNICAL

1592
01:06:27,840 --> 01:06:30,120
ASPECTS OF THE MEETING TO KEEP A

1593
01:06:30,120 --> 01:06:32,400
COPY OF ALL THESE COMMENTS AND

1594
01:06:32,400 --> 01:06:33,840
QUESTIONS.

1595
01:06:33,840 --> 01:06:36,440
SOME OF THE MORE RECENT COMMENTS

1596
01:06:36,440 --> 01:06:38,600
SEEM TO HAVE TO DO WITH HOW

1597
01:06:38,600 --> 01:06:40,240
PREGNANT PEOPLE ARE ADVISED

1598
01:06:40,240 --> 01:06:42,600
DURING PREGNANCY AND WHAT THEY

1599
01:06:42,600 --> 01:06:44,520
ARE TOLD REGARDING RISK FACTORS,

1600
01:06:44,520 --> 01:06:46,200
AND WE HAVE A NUMBER OF OBVIOUS

1601
01:06:46,200 --> 01:06:50,840
TA TRIOBSTETRICIANS ON THE CALLO

1602
01:06:50,840 --> 01:06:52,200
MIGHT BE ABLE TO RESPOND TO

1603
01:06:52,200 --> 01:06:58,920
THAT.

1604
01:06:58,920 --> 01:07:01,200
WE'RE DEFINITELY TAKING NOTE OF

1605
01:07:01,200 --> 01:07:01,760
THESE COMMENTS.

1606
01:07:01,760 --> 01:07:05,040
I DON'T KNOW IF EVERYBODY ELSE

1607
01:07:05,040 --> 01:07:06,120
HAS ACCESS OR IS LOOKING AT THE

1608
01:07:06,120 --> 01:07:08,040
CHAT BOX, BUT THERE'S A LOT OF

1609
01:07:08,040 --> 01:07:10,680
TALK ABOUT CONCERNS OVER

1610
01:07:10,680 --> 01:07:13,880
TOXOPLASMOSIS, PEOPLE BEING

1611
01:07:13,880 --> 01:07:16,080
ADVISED HOW TO CHANGE THEIR CAT

1612
01:07:16,080 --> 01:07:17,440
LITTER BUT THEY'RE NOT WARNED

1613
01:07:17,440 --> 01:07:20,280
ABOUT THE RISKS OF STILLBIRTH.

1614
01:07:20,280 --> 01:07:22,400
CLEARLY THERE ARE PERSPECTIVES

1615
01:07:22,400 --> 01:07:24,920
FROM FAMILIES THAT HAVE BEEN

1616
01:07:24,920 --> 01:07:26,760
AFFECTED THAT MAY NOT AND

1617
01:07:26,760 --> 01:07:28,520
PROBABLY NOT HAVE BEEN CAPTURED

1618
01:07:28,520 --> 01:07:30,880
IN THE LITERATURE.

1619
01:07:30,880 --> 01:07:32,200
SO I THINK THAT'S ONE OF THE

1620
01:07:32,200 --> 01:07:33,960
THINGS I'M TAKING AWAY FROM THIS

1621
01:07:33,960 --> 01:07:37,040
MEETING RIGHT NOW, IS WE'RE

1622
01:07:37,040 --> 01:07:39,160
GOING TO NEED A BROADER

1623
01:07:39,160 --> 01:07:40,880
PERSPECTIVE GOING FORWARD, THAT

1624
01:07:40,880 --> 01:07:43,040
WE CAN'T -- WE'RE VERY

1625
01:07:43,040 --> 01:07:44,280
APPRECIATIVE OF THE ANALYSIS

1626
01:07:44,280 --> 01:07:45,760
THAT SARAH AND HER TEAM HAS

1627
01:07:45,760 --> 01:07:47,920
DONE, BUT THAT IS ONE ASPECT OF

1628
01:07:47,920 --> 01:07:50,560
THIS, AND IT'S COMING AS SHE

1629
01:07:50,560 --> 01:07:55,440
SAID FROM A -- ALMOST AN

1630
01:07:55,440 --> 01:07:56,440
INDIRECT PERSPECTIVE IN MANY

1631
01:07:56,440 --> 01:07:58,440
CASES BECAUSE THE LACK OF DIRECT

1632
01:07:58,440 --> 01:08:00,440
RESEARCH PUBLICATIONS ON

1633
01:08:00,440 --> 01:08:04,400
STILLBIRTH RESEARCH.

1634
01:08:04,400 --> 01:08:05,440
SO THIS IS AN OPPORTUNITY FOR

1635
01:08:05,440 --> 01:08:06,240
ALL OF YOU.

1636
01:08:06,240 --> 01:08:07,800
I'M NOT SURE HOW TO HANDLE ALL

1637
01:08:07,800 --> 01:08:11,560
THE QUESTIONS THAT ARE COMING

1638
01:08:11,560 --> 01:08:12,040
THROUGH.

1639
01:08:12,040 --> 01:08:13,960
>>I'M WONDERING, DR.
BIANCHI,

1640
01:08:13,960 --> 01:08:16,640
IF I COULD INVITE EITHER

1641
01:08:16,640 --> 01:08:24,320
DR. SILVER OR DR. DUDLEY TO MAKE

1642
01:08:24,320 --> 01:08:26,360
ANY QUESTIONS IN REGARD TO THESE

1643
01:08:26,360 --> 01:08:27,320
QUESTIONS THAT HAVE COME UP.

1644
01:08:27,320 --> 01:08:28,960
AND WE WILL BE SURE OBVIOUSLY TO

1645
01:08:28,960 --> 01:08:32,240
DEAL WITH THESE IN OUR REMAINING

1646
01:08:32,240 --> 01:08:34,960
MEETINGS AND OBVIOUSLY INCLUDE

1647
01:08:34,960 --> 01:08:36,600
THEM IN THE REPORT AS WELL.

1648
01:08:36,600 --> 01:08:39,800
DR. SILVER?

1649
01:08:39,800 --> 01:08:40,400
>>THANKS.

1650
01:08:40,400 --> 01:08:45,240
I DON'T WANT TO GET THIS WRONG,

1651
01:08:45,240 --> 01:08:47,360
SO I DON'T WANT TO SPEAK FOR THE

1652
01:08:47,360 --> 01:08:48,440
PARENTS, AND THANK YOU TO ALL

1653
01:08:48,440 --> 01:08:53,920
THE PARENTS FOR BEING INVOLVED.

1654
01:08:53,920 --> 01:08:55,120
AND FOR COMMUNICATING SO WELL

1655
01:08:55,120 --> 01:08:59,800
AND SO PASSIONATELY.

1656
01:08:59,800 --> 01:09:01,320
WHAT I THINK I'M HEARING, AND

1657
01:09:01,320 --> 01:09:02,640
PLEASE LET ME KNOW IF WE'RE ON

1658
01:09:02,640 --> 01:09:04,440
THE RIGHT TRACK, IS THAT YOU

1659
01:09:04,440 --> 01:09:05,560
APPRECIATE ALL OF THE WORK THAT

1660
01:09:05,560 --> 01:09:07,840
WE'RE DOING TO GET INTO

1661
01:09:07,840 --> 01:09:11,360
INDIVIDUAL CAUSES OF STILLBIRTH

1662
01:09:11,360 --> 01:09:13,920
AND RISK FACTORS AND PATHWAYS,

1663
01:09:13,920 --> 01:09:17,320
BUT YOU ALSO WANT TO SEE US

1664
01:09:17,320 --> 01:09:19,040
FOCUSED ON RESEARCH THAT CAN

1665
01:09:19,040 --> 01:09:20,560
HAVE A DIRECT IMPACT ON

1666
01:09:20,560 --> 01:09:22,320
STILLBIRTH RIGHT AWAY.

1667
01:09:22,320 --> 01:09:25,080
THINGS LIKE STUDYING THE EFFECT

1668
01:09:25,080 --> 01:09:26,280
OF PUBLIC HEALTH MEASURES TO

1669
01:09:26,280 --> 01:09:28,920
INCREASE AWARENESS OF FETAL

1670
01:09:28,920 --> 01:09:32,000
MOVEMENT, STUDYING PUBLIC HEALTH

1671
01:09:32,000 --> 01:09:35,360
MEASURES TO INSTITUTE MORE

1672
01:09:35,360 --> 01:09:35,920
SURVEILLANCE.

1673
01:09:35,920 --> 01:09:40,480
SO IN ADDITION TO ASSESSING EACH

1674
01:09:40,480 --> 01:09:43,000
INDIVIDUAL PATHWAY, EACH

1675
01:09:43,000 --> 01:09:44,200
INDIVIDUAL RISK FACTOR, YOU'D

1676
01:09:44,200 --> 01:09:46,880
LIKE TO SEE US DO SOME STUDIES

1677
01:09:46,880 --> 01:09:48,520
THAT ARE MUCH MORE BROAD AND

1678
01:09:48,520 --> 01:09:51,840
MUCH MORE LIKELY TO HAVE AN

1679
01:09:51,840 --> 01:09:56,240
EFFECT SOONER RATHER THAN LATER

1680
01:09:56,240 --> 01:09:57,480
FOR THOSE KINDS OF STUDIES.

1681
01:09:57,480 --> 01:09:58,800
IS THAT FAIR?

1682
01:09:58,800 --> 01:10:04,760
>>THAT IS FAIR, BOB.

1683
01:10:04,760 --> 01:10:06,480
I WANT TO MAKE SURE WE DON'T GET

1684
01:10:06,480 --> 01:10:07,800
TOO FAR BEHIND WITH OUR

1685
01:10:07,800 --> 01:10:08,920
PROCEEDINGS BUT THAT'S A CLEAR

1686
01:10:08,920 --> 01:10:10,320
MESSAGE THAT WE'RE GETTING FROM

1687
01:10:10,320 --> 01:10:15,080
THE PARENTS.

1688
01:10:15,080 --> 01:10:15,800
DR. DUDLEY, HOW ABOUT YOU?

1689
01:10:15,800 --> 01:10:17,400
>>I'LL JUST ADD TO WHAT
BOB

1690
01:10:17,400 --> 01:10:18,360
SAID.

1691
01:10:18,360 --> 01:10:21,680
I CAN'T SPEAK TO WHAT THE

1692
01:10:21,680 --> 01:10:22,440
GENERAL OBSTETRICIAN

1693
01:10:22,440 --> 01:10:23,880
GYNECOLOGIST TAKING CARE OF

1694
01:10:23,880 --> 01:10:28,160
INDIVIDUAL PATIENTS WOULD SAY,

1695
01:10:28,160 --> 01:10:31,160
BUT I FEEL CONFIDENT THAT MOST

1696
01:10:31,160 --> 01:10:34,680
OF US WHO ARE MFNs DISCUSS

1697
01:10:34,680 --> 01:10:36,640
FACTORS FOR STILLBIRTH OFTEN

1698
01:10:36,640 --> 01:10:37,400
WITH OUR PATIENTS.

1699
01:10:37,400 --> 01:10:38,760
TODAY I WAS IN CLINIC AND I

1700
01:10:38,760 --> 01:10:39,840
PROBABLY HAD THREE DISCUSSIONS

1701
01:10:39,840 --> 01:10:40,320
ABOUT IT.

1702
01:10:40,320 --> 01:10:44,320
AND A LOT OF JUST YOUR AVERAGE

1703
01:10:44,320 --> 01:10:45,080
OB-GYNs DON'T LIKE TO BRING

1704
01:10:45,080 --> 01:10:46,520
THIS TOPIC UP BECAUSE IT'S KIND

1705
01:10:46,520 --> 01:10:48,040
OF SCARY AND YOU DON'T

1706
01:10:48,040 --> 01:10:48,960
NECESSARILY WANT TO ALARM

1707
01:10:48,960 --> 01:10:49,360
PATIENTS.

1708
01:10:49,360 --> 01:10:53,000
SO CERTAINLY WE HEAR FROM THE

1709
01:10:53,000 --> 01:10:55,960
PARENTS AND BOB AND I AND ALL

1710
01:10:55,960 --> 01:10:57,240
OTHERS ON THE CALL WORK WITH

1711
01:10:57,240 --> 01:10:59,760
PARENTS ALL THE TIME IF THEY'VE

1712
01:10:59,760 --> 01:11:00,960
SUFFERED A STILLBIRTH.

1713
01:11:00,960 --> 01:11:02,600
AND WE DEFINITELY HEAR YOU ON

1714
01:11:02,600 --> 01:11:04,960
THAT AND WE DISCUSS THIS IN

1715
01:11:04,960 --> 01:11:07,040
GREAT DETAIL.

1716
01:11:07,040 --> 01:11:08,560
AND SO THE OTHER THING THAT I

1717
01:11:08,560 --> 01:11:10,120
THINK WE HAVE TO BE REALLY

1718
01:11:10,120 --> 01:11:12,320
CAREFUL OF IS TO NOT EQUATE

1719
01:11:12,320 --> 01:11:13,640
CAUSATION OF STILLBIRTH WITH

1720
01:11:13,640 --> 01:11:16,360
RISK FACTORS FOR STILLBIRTH.

1721
01:11:16,360 --> 01:11:18,480
AS BOB AND OTHER FOLKS WHO ARE

1722
01:11:18,480 --> 01:11:21,160
ON CALL WHO ARE A PART OF THE

1723
01:11:21,160 --> 01:11:22,560
CAUSE OF CAUSE OF DEATH

1724
01:11:22,560 --> 01:11:25,320
DETERMINATIONS FOR OUR PATIENTS

1725
01:11:25,320 --> 01:11:27,800
AND SCREEN WILL ATTEST TO, IT IS

1726
01:11:27,800 --> 01:11:29,080
SOMETIMES DREADFULLY DIFFICULT

1727
01:11:29,080 --> 01:11:31,280
TO IDENTIFY A CAUSE OF DEATH,

1728
01:11:31,280 --> 01:11:32,760
EVEN ONE OR TWO OR THREE

1729
01:11:32,760 --> 01:11:34,320
POTENTIAL CAUSES OF DEATH,

1730
01:11:34,320 --> 01:11:35,920
BECAUSE THERE'S SO MANY

1731
01:11:35,920 --> 01:11:38,680
CONTRIBUTING RISK FACTORS THAT

1732
01:11:38,680 --> 01:11:39,560
GO INTO THIS.

1733
01:11:39,560 --> 01:11:40,920
SO WE NEED TO BE VERY CAREFUL

1734
01:11:40,920 --> 01:11:42,120
ABOUT NOT EQUATING CAUSE OF

1735
01:11:42,120 --> 01:11:43,880
DEATH WITH A RISK FACTOR FOR

1736
01:11:43,880 --> 01:11:44,880
STILLBIRTH BECAUSE THEY MAY BE

1737
01:11:44,880 --> 01:11:49,720
TWO VERY DIFFERENT THINGS.

1738
01:11:49,720 --> 01:11:50,960
>>THANK YOU, DR. DUDLEY.

1739
01:11:50,960 --> 01:11:55,360
THAT'S A GREAT POINT.

1740
01:11:55,360 --> 01:11:56,360
ELLIE, YOU HAVE YOUR HAND UP.

1741
01:11:56,360 --> 01:11:57,120
>>THANK YOU SO MUCH.

1742
01:11:57,120 --> 01:11:58,000
I APPRECIATE IT.

1743
01:11:58,000 --> 01:11:59,080
I'LL TRY TO BE AS BRIEF AS

1744
01:11:59,080 --> 01:11:59,600
POSSIBLE.

1745
01:11:59,600 --> 01:12:00,480
THERE'S TWO THINGS I JUST WANT

1746
01:12:00,480 --> 01:12:01,240
TO ADDRESS.

1747
01:12:01,240 --> 01:12:03,000
THE FIRST IS THAT THE CAUSE OF

1748
01:12:03,000 --> 01:12:05,640
DEATH IS A VERY DIFFICULT THING

1749
01:12:05,640 --> 01:12:08,000
AS YOU STATED FOR US TO

1750
01:12:08,000 --> 01:12:09,840
DETERMINE, AND PART OF THAT IS

1751
01:12:09,840 --> 01:12:13,760
BECAUSE IN MY EXPERIENCE AS A

1752
01:12:13,760 --> 01:12:15,280
PARENT, PERINATAL PATHOLOGISTS

1753
01:12:15,280 --> 01:12:16,920
HAVE NOT BEEN WELL TRAINED INTO

1754
01:12:16,920 --> 01:12:19,200
HOW TO DO BOTH FETAL AUTOPSIES

1755
01:12:19,200 --> 01:12:22,000
AND PLACENTAL PATHOLOGY, AND I

1756
01:12:22,000 --> 01:12:29,440
ACTUALLY ENDED UP PAYING UP

1757
01:12:29,440 --> 01:12:32,400
TO -- OUT OF POCKET TO LOOK AT

1758
01:12:32,400 --> 01:12:33,880
SLIDES TO GIVE ME A TRUE CAUSE

1759
01:12:33,880 --> 01:12:38,040
OF DEATH.

1760
01:12:38,040 --> 01:12:39,240
AT TIMES IT LISTS THE CAUSE OF

1761
01:12:39,240 --> 01:12:40,640
DEATH AS STILLBIRTH WHICH IS NOT

1762
01:12:40,640 --> 01:12:42,040
A CAUSE, AND I REALLY -- THAT

1763
01:12:42,040 --> 01:12:43,360
WAS ADDRESSED EARLIER.

1764
01:12:43,360 --> 01:12:46,120
SO WHEN I SEE THESE STUDIES THAT

1765
01:12:46,120 --> 01:12:47,480
ARE LOOKING AT THERE'S RISK

1766
01:12:47,480 --> 01:12:50,400
FACTORS AND THAT ARE LOOKING AT

1767
01:12:50,400 --> 01:12:52,480
DRUG USE AND THESE DIFFERENT

1768
01:12:52,480 --> 01:12:53,880
THINGS, I'M THINKING, WHERE DO I

1769
01:12:53,880 --> 01:12:55,720
FIT INTO THAT STUDY?

1770
01:12:55,720 --> 01:12:57,560
BECAUSE THE ACTUAL CAUSE OF MY

1771
01:12:57,560 --> 01:12:59,880
SON'S DEATH WAS CORD

1772
01:12:59,880 --> 01:13:02,040
COMPRESSIONS.

1773
01:13:02,040 --> 01:13:05,440
AND SO I NEVER SEE CORD

1774
01:13:05,440 --> 01:13:07,280
COMPRESSIONS ACTUALLY, YOU KNOW,

1775
01:13:07,280 --> 01:13:09,080
ADDRESSED IN A STUDY UNLESS IT'S

1776
01:13:09,080 --> 01:13:10,520
A STUDY THAT'S DONE BY THE

1777
01:13:10,520 --> 01:13:11,840
PEOPLE WHO ARE ACTUALLY WORKING

1778
01:13:11,840 --> 01:13:13,680
TO PREVENT STILLBIRTH, AND WE DO

1779
01:13:13,680 --> 01:13:17,600
SEE THOSE STUDIES, I JUST

1780
01:13:17,600 --> 01:13:18,680
HAVEN'T SEEN THEM IN THIS

1781
01:13:18,680 --> 01:13:19,680
PARTICULAR WORKING GROUP.

1782
01:13:19,680 --> 01:13:21,400
OR I'VE SEEN THEM DONE IN

1783
01:13:21,400 --> 01:13:23,040
STUDIES IN DIFFERENT COUNTRIES.

1784
01:13:23,040 --> 01:13:24,560
SO I THINK MY QUESTION IS, THESE

1785
01:13:24,560 --> 01:13:27,120
STUDIES THAT YOU BROUGHT UP

1786
01:13:27,120 --> 01:13:28,760
EARLIER, ARE THEY LOOKING AT

1787
01:13:28,760 --> 01:13:32,160
TRUE CAUSES BECAUSE MY SON'S

1788
01:13:32,160 --> 01:13:33,280
DEATH WAS NEVER ACTUALLY

1789
01:13:33,280 --> 01:13:34,000
RECORDED OR REPORTED.

1790
01:13:34,000 --> 01:13:36,080
I WAS ACTUALLY DISCOURAGED FROM

1791
01:13:36,080 --> 01:13:37,800
GETTING AN AUTOPSY, AND THEN

1792
01:13:37,800 --> 01:13:39,640
WHEN I DID HAVE THE PLACENTAL

1793
01:13:39,640 --> 01:13:41,720
PATHOLOGY, I WAS GIVEN A WRONG

1794
01:13:41,720 --> 01:13:43,400
CAUSE OF DEATH, HAD TO WAIT A

1795
01:13:43,400 --> 01:13:45,040
YEAR AND A HALF AND PAY $400 TO

1796
01:13:45,040 --> 01:13:46,720
GET THE CORRECT CAUSE OF DEATH,

1797
01:13:46,720 --> 01:13:48,040
AND THAT WAS NEVER RECORDED

1798
01:13:48,040 --> 01:13:48,440
ANYWHERE.

1799
01:13:48,440 --> 01:13:50,000
SO I'M NEVER GOING TO SHOW UP IN

1800
01:13:50,000 --> 01:13:50,760
A STUDY.

1801
01:13:50,760 --> 01:13:52,920
AND THAT HAS BEEN THE LIVED

1802
01:13:52,920 --> 01:13:54,480
EXPERIENCE OF PLENTY OF PARENTS.

1803
01:13:54,480 --> 01:13:55,800
AND I THINK THE OTHER THING THAT

1804
01:13:55,800 --> 01:13:59,360
NEEDS TO BE ADDRESSED IS THAT

1805
01:13:59,360 --> 01:14:02,440
80% IF NOT MORE, I BELIEVE THE

1806
01:14:02,440 --> 01:14:04,080
NUMBERS SHOW AT LEAST 80% OF

1807
01:14:04,080 --> 01:14:07,320
PARENTS WHO HAVE EXPERIENCED A

1808
01:14:07,320 --> 01:14:08,600
STILLBIRTH WILL TELL YOU THEY

1809
01:14:08,600 --> 01:14:10,480
ALSO EXPERIENCED REDUCED FETAL

1810
01:14:10,480 --> 01:14:11,120
MOVEMENT.

1811
01:14:11,120 --> 01:14:12,960
THAT IS A HUGE RISK FACTOR, AND

1812
01:14:12,960 --> 01:14:14,720
GRANTED IT IS NOT A MEDICAL RISK

1813
01:14:14,720 --> 01:14:16,800
FACTOR, BUT IT IS THE LIVED

1814
01:14:16,800 --> 01:14:19,440
EXPERIENCE OF NEARLY EVERY

1815
01:14:19,440 --> 01:14:22,080
SINGLE PARENT I HAVE SPOKEN TO,

1816
01:14:22,080 --> 01:14:24,160
THAT THEY HAVE EXPERIENCED

1817
01:14:24,160 --> 01:14:26,760
REDUCED FETAL MOVEMENT, AND A

1818
01:14:26,760 --> 01:14:29,720
MAJORITY OF US, NEARLY ALL OF US

1819
01:14:29,720 --> 01:14:33,680
WERE NEVER INFORMED TO MONITOR

1820
01:14:33,680 --> 01:14:34,960
OUR BABY'S MOVEMENTS.

1821
01:14:34,960 --> 01:14:37,000
AND SO THE IDEA THAT WE DON'T

1822
01:14:37,000 --> 01:14:42,480
WANT TO MAKE PARENTS AFRAID, I

1823
01:14:42,480 --> 01:14:43,800
THINK IS SOMETHING THAT YOU NEED

1824
01:14:43,800 --> 01:14:47,400
TO RE-ASSESS BECAUSE WE ARE

1825
01:14:47,400 --> 01:14:49,680
WARNED ABOUT LISTERIA AND WE ARE

1826
01:14:49,680 --> 01:14:51,000
WARNED ABOUT SIDS AND WE ARE

1827
01:14:51,000 --> 01:14:52,720
WARNED ABOUT SO MANY OTHER

1828
01:14:52,720 --> 01:14:53,600
ASPECTS OF VERY SCARY THINGS

1829
01:14:53,600 --> 01:14:55,000
THAT CAN HAPPEN TO OUR BABIES

1830
01:14:55,000 --> 01:14:56,200
AND TO OUR PREGNANCY.

1831
01:14:56,200 --> 01:14:58,040
BUT WE ARE NEVER WARNED ABOUT

1832
01:14:58,040 --> 01:15:00,520
THE THINGS THAT TRULY IS NOT

1833
01:15:00,520 --> 01:15:01,960
RARE, AND I STILL DON'T FEEL

1834
01:15:01,960 --> 01:15:03,480
LIKE THAT QUESTION WAS ANSWERED

1835
01:15:03,480 --> 01:15:06,400
AS TO -- YOU KNOW, I COMPLETELY

1836
01:15:06,400 --> 01:15:08,920
UNDERSTAND THAT THIS IS NOT A

1837
01:15:08,920 --> 01:15:09,800
STATISTICALLY SIGNIFICANT EVENT,

1838
01:15:09,800 --> 01:15:11,320
BUT WHEN YOU COMPARE TO THE

1839
01:15:11,320 --> 01:15:14,480
OTHER THINGS THAT WE ARE WARNED

1840
01:15:14,480 --> 01:15:16,960
ABOUT, IT IS INCREDIBLY MORE STA

1841
01:15:16,960 --> 01:15:22,200
TIMORESTATISTICALLY SIGNIFICANTN

1842
01:15:22,200 --> 01:15:26,800
YOU COMPARE TO LISTERIA AND

1843
01:15:26,800 --> 01:15:27,640
SIDS.

1844
01:15:27,640 --> 01:15:28,520
SO FIRST OUR CAUSES OF DEATH ARE

1845
01:15:28,520 --> 01:15:32,480
NOT BEING REPORTED, AND SO I

1846
01:15:32,480 --> 01:15:36,280
HIGHLY DOUBT THE ACCURACY OF

1847
01:15:36,280 --> 01:15:37,240
THOSE STUDIES.

1848
01:15:37,240 --> 01:15:39,960
AND SECONDLY, THAT YOU HAVE TO

1849
01:15:39,960 --> 01:15:42,560
LEARN FROM OUR LIVED EXPERIENCE

1850
01:15:42,560 --> 01:15:46,160
WHEN WE TELL YOU THAT WE ARE NOT

1851
01:15:46,160 --> 01:15:48,360
BEING WARNED ABOUT REDUCED FETAL

1852
01:15:48,360 --> 01:15:48,680
MOVEMENT.

1853
01:15:48,680 --> 01:15:51,760
SO HOPE THAT HELPS.

1854
01:15:51,760 --> 01:15:54,440
>>IT DOES, ELLIE, THANK
YOU SO

1855
01:15:54,440 --> 01:15:55,000
MUCH.

1856
01:15:55,000 --> 01:15:57,520
THIS IS VERY HELPFUL, AND DULY

1857
01:15:57,520 --> 01:15:57,960
NOTED.

1858
01:15:57,960 --> 01:16:00,640
ANY OF THE OTHER -- UMA, DO YOU

1859
01:16:00,640 --> 01:16:04,680
HAVE ANY OTHER COMMENTS

1860
01:16:04,680 --> 01:16:06,880
>>THANK YOU FOR YOUR
COMMENTS.

1861
01:16:06,880 --> 01:16:09,200
AND THEN I SEE IN THE CHAT ALSO

1862
01:16:09,200 --> 01:16:11,280
ANDREW ASKING QUESTIONS ABOUT

1863
01:16:11,280 --> 01:16:14,520
THE CAUSE OF DEATH.

1864
01:16:14,520 --> 01:16:15,800
SO THAT POINT IS VERY IMPORTANT.

1865
01:16:15,800 --> 01:16:17,600
SO BACK WHEN THE STILLBIRTH

1866
01:16:17,600 --> 01:16:18,960
COLLABORATIVE RESEARCH NETWORK

1867
01:16:18,960 --> 01:16:21,600
WAS STARTED IN 2003 ACTUALLY,

1868
01:16:21,600 --> 01:16:24,520
THERE WAS NOTHING IN THE

1869
01:16:24,520 --> 01:16:26,800
LITERATURE, AS A CLINICIAN,

1870
01:16:26,800 --> 01:16:29,760
BASICALLY YOU HAD NOTHING TO GO

1871
01:16:29,760 --> 01:16:31,840
BY TO COUNSEL FAMILIES THAT HAD

1872
01:16:31,840 --> 01:16:34,040
THIS DEVASTATING OUTCOME.

1873
01:16:34,040 --> 01:16:36,680
SO WHEN THE STILLBIRTH

1874
01:16:36,680 --> 01:16:37,560
COLLABORATIVE RESEARCH NETWORK

1875
01:16:37,560 --> 01:16:38,880
WAS STARTED AND LOOKING AT CAUSE

1876
01:16:38,880 --> 01:16:41,400
OF DEATH, THIS IS WHAT THE STATE

1877
01:16:41,400 --> 01:16:42,960
OF THE ART PERINATAL PATHOLOGY,

1878
01:16:42,960 --> 01:16:46,120
SO ALL THE CONCERNS AND DREW AND

1879
01:16:46,120 --> 01:16:47,560
A LOT HAVE RAISED ABOUT THE

1880
01:16:47,560 --> 01:16:50,160
QUALITY OF THE EVALUATION, SO HE

1881
01:16:50,160 --> 01:16:57,600
ASKED ABOUT HOW ACCURATE ARE THE

1882
01:16:57,600 --> 01:16:58,600
FINDINGS, 77% THERE WAS A CAUSE,

1883
01:16:58,600 --> 01:17:00,640
AND THAT'S WITH A THUR YOE

1884
01:17:00,640 --> 01:17:02,240
WORKUP, SO STATE OF THE ART

1885
01:17:02,240 --> 01:17:04,560
AUTOPSY DONE BY A TRAINED

1886
01:17:04,560 --> 01:17:06,840
PERINATAL PATHOLOGIST, CAREFUL

1887
01:17:06,840 --> 01:17:09,560
EVALUATION OF THE PLACENTA, ALL

1888
01:17:09,560 --> 01:17:18,400
THE MATERNAL LAB TESTING.

1889
01:17:18,400 --> 01:17:21,240
OUR STUDY COORDINATES TALKED TO

1890
01:17:21,240 --> 01:17:22,440
FAMILIES, TALKED TO PREGNANT

1891
01:17:22,440 --> 01:17:24,960
PEOPLE, TO THE DADS, THE FAMILY,

1892
01:17:24,960 --> 01:17:26,480
ABOUT THEIR EXPERIENCES AROUND

1893
01:17:26,480 --> 01:17:29,600
THE STILLBIRTH, SO THEY DID ASK

1894
01:17:29,600 --> 01:17:31,800
QUESTIONS ABOUT EVEN FETAL

1895
01:17:31,800 --> 01:17:34,240
MOVEMENT, SO WE TALKED DIRECTLY

1896
01:17:34,240 --> 01:17:35,440
TO THE WOMEN THEMSELVES.

1897
01:17:35,440 --> 01:17:38,040
SO I THINK THAT'S WHY IT'S SO

1898
01:17:38,040 --> 01:17:40,200
HIGH, 77%, SO THAT DOES INCLUDE

1899
01:17:40,200 --> 01:17:45,520
AUTOPSY, AND THERE'S A PAPER

1900
01:17:45,520 --> 01:17:48,680
PUBLISHED BY DR. PAIGE OUT OF

1901
01:17:48,680 --> 01:17:49,960
UTAH ABOUT THE EVALUATION AND

1902
01:17:49,960 --> 01:17:52,880
HOW MUCH IT IMPROVES FINDING A

1903
01:17:52,880 --> 01:17:54,160
CAUSE.

1904
01:17:54,160 --> 01:17:56,120
BUT THAT'S IN A STATE-OF-THE-ART

1905
01:17:56,120 --> 01:17:57,120
STUDY.

1906
01:17:57,120 --> 01:17:58,640
IN REAL LIFE, YEAH, YOU DON'T

1907
01:17:58,640 --> 01:18:02,240
HAVE ACCESS TO QUALITY PERINATAL

1908
01:18:02,240 --> 01:18:04,440
PATHOLOGY, QUALITY PLACENTAL

1909
01:18:04,440 --> 01:18:05,760
EVALUATION, MAY NOT GET THE

1910
01:18:05,760 --> 01:18:10,000
TEST, SO YOUR POINTS ARE WELL

1911
01:18:10,000 --> 01:18:10,640
TAKEN .

1912
01:18:10,640 --> 01:18:12,280
>>MONICA, I WANT TO MAKE
SURE

1913
01:18:12,280 --> 01:18:15,240
THAT WE GET BACK ON TRACK.

1914
01:18:15,240 --> 01:18:15,760
>>YES.

1915
01:18:15,760 --> 01:18:18,680
>>THERE WILL BE TIME FOR
MORE

1916
01:18:18,680 --> 01:18:21,520
QUESTIONS AFTER YOUR PANEL

1917
01:18:21,520 --> 01:18:22,080
SPEAKERS ARE DONE.

1918
01:18:22,080 --> 01:18:23,560
WOULD YOU LIKE TO MOVE ON TO THE

1919
01:18:23,560 --> 01:18:25,720
NEXT SPEAKER?

1920
01:18:25,720 --> 01:18:28,080
>>WE WERE ALSO THINKING
TO TAKE

1921
01:18:28,080 --> 01:18:30,000
A FIVE MINUTES BREAK AT THIS

1922
01:18:30,000 --> 01:18:30,200
POINT?

1923
01:18:30,200 --> 01:18:31,760
>>SURE.

1924
01:18:31,760 --> 01:18:34,280
>>JUST TO GIVE SOME TIME
TO

1925
01:18:34,280 --> 01:18:36,160
RE-ASSESS A FEW THINGS IN THE

1926
01:18:36,160 --> 01:18:36,680
BACKGROUND.

1927
01:18:36,680 --> 01:18:40,040
AND SO WE'LL COME BACK, I WILL

1928
01:18:40,040 --> 01:18:44,440
SAY AT 2:55 SOUNDS GOOD?

1929
01:18:44,440 --> 01:18:46,240
>>2:55 SOUNDS GOOD.

1930
01:18:46,240 --> 01:18:48,760
SO HOW ABOUT A SMALL BIO BREAK

1931
01:18:48,760 --> 01:18:48,960
AND --

1932
01:18:48,960 --> 01:18:49,560
>>EXACTLY.

1933
01:18:49,560 --> 01:18:50,640
>>I WILL BE BACK.

1934
01:18:50,640 --> 01:18:51,600
>>SOUNDS GOOD.

1935
01:18:51,600 --> 01:18:54,600
THANK YOU FOR EVERYONE.

1936
01:18:54,600 --> 01:18:56,200
>>I BELIEVE WE ARE BACK,

1937
01:18:56,200 --> 01:18:58,600
EVERYONE.

1938
01:18:58,600 --> 01:19:00,040
THANK YOU FOR THE DISCUSSION

1939
01:19:00,040 --> 01:19:01,280
THAT WE HAD UNTIL NOW.

1940
01:19:01,280 --> 01:19:05,800
NOW WE ARE READY TO OUR NEXT

1941
01:19:05,800 --> 01:19:07,000
PRESENTER, DR. ELIZABETH

1942
01:19:07,000 --> 01:19:09,280
GREGORY.

1943
01:19:09,280 --> 01:19:11,360
A SCIENTIST FOR THE CENTERS FOR

1944
01:19:11,360 --> 01:19:12,800
DISEASE CONTROL AND PREVENTION

1945
01:19:12,800 --> 01:19:14,040
IN THE NATIONAL CENTER FOR

1946
01:19:14,040 --> 01:19:15,280
HEALTH STATISTICS.

1947
01:19:15,280 --> 01:19:17,960
AND SHE'S GOING TO PRESENT FETAL

1948
01:19:17,960 --> 01:19:21,360
DEATH IN THE UNITED STATES.

1949
01:19:21,360 --> 01:19:22,440
AND WE OPEN IT AGAIN FOR

1950
01:19:22,440 --> 01:19:22,760
DISCUSSION.

1951
01:19:22,760 --> 01:19:32,760
THANK YOU, DR. GREGORY.

1952
01:19:32,760 --> 01:19:34,240
>>HELLO.

1953
01:19:34,240 --> 01:19:36,840
I AM DR. ELIZABETH GREGORY.

1954
01:19:36,840 --> 01:19:38,080
TODAY I'LL BE TALKING TO YOU

1955
01:19:38,080 --> 01:19:39,920
ABOUT FETAL DEATHS.

1956
01:19:39,920 --> 01:19:42,760
AND I MANAGE THE NATIONAL FETAL

1957
01:19:42,760 --> 01:19:52,960
DEATH FILE.

1958
01:19:54,880 --> 01:19:57,000
TODAY I'LL BE TALKING TO YOU

1959
01:19:57,000 --> 01:19:58,080
ABOUT FETAL DEATHS IN THE UNITED

1960
01:19:58,080 --> 01:19:58,320
STATES.

1961
01:19:58,320 --> 01:20:00,360
>>SORRY, DR. GREGORY, CAN
WE

1962
01:20:00,360 --> 01:20:01,000
SEE THE SLIDES?

1963
01:20:01,000 --> 01:20:01,800
>>SURE.

1964
01:20:01,800 --> 01:20:02,200
SORRY.

1965
01:20:02,200 --> 01:20:02,680
HOLD ON.

1966
01:20:02,680 --> 01:20:10,000
>>NO, DON'T WORRY.

1967
01:20:10,000 --> 01:20:11,720
>>CAN YOU SEE IT NOW?

1968
01:20:11,720 --> 01:20:12,480
>>YES.

1969
01:20:12,480 --> 01:20:14,280
YOU ARE NOT IN A PRESENTER MODE

1970
01:20:14,280 --> 01:20:18,240
RIGHT NOW.

1971
01:20:18,240 --> 01:20:19,000
NOW WE ARE.

1972
01:20:19,000 --> 01:20:23,640
THANK YOU.

1973
01:20:23,640 --> 01:20:25,480
>>BEFORE I START, I WOULD
LIKE

1974
01:20:25,480 --> 01:20:28,520
TO ACKNOWLEDGE MY COLLEAGUES,

1975
01:20:28,520 --> 01:20:33,640
JOYCE MARTIN, AND DONNA HOYER,

1976
01:20:33,640 --> 01:20:37,000
WHO ALSO WORK ON FETAL DEATHS.

1977
01:20:37,000 --> 01:20:38,200
TODAY I'LL BE TALKING TO YOU

1978
01:20:38,200 --> 01:20:40,520
ABOUT THE IMPORTANCE OF FETAL

1979
01:20:40,520 --> 01:20:42,600
DEATH AND VITAL STATISTICS FETAL

1980
01:20:42,600 --> 01:20:44,200
DEATH DATA, DEFINITIONS AND

1981
01:20:44,200 --> 01:20:45,880
REPORTING REQUIREMENTS, HISTORY

1982
01:20:45,880 --> 01:20:48,120
AND TYPES OF FETAL DEATH

1983
01:20:48,120 --> 01:20:50,440
INFORMATION COLLECTED,

1984
01:20:50,440 --> 01:20:52,160
CHALLENGES WITH FETAL DEATH

1985
01:20:52,160 --> 01:20:54,720
REPORTING AND DATA QUALITY

1986
01:20:54,720 --> 01:20:56,320
ISSUES, DATA QUALITY IMPROVEMENT

1987
01:20:56,320 --> 01:21:00,360
EFFORTS AND RESOURCES, DATA

1988
01:21:00,360 --> 01:21:02,440
AVAILABILITY, AND TRENDS IN

1989
01:21:02,440 --> 01:21:03,640
SELECTED CHARACTERISTICS OF

1990
01:21:03,640 --> 01:21:04,800
FETAL DEATHS IN THE UNITED

1991
01:21:04,800 --> 01:21:10,840
STATES FOR 2020.

1992
01:21:10,840 --> 01:21:12,440
I'LL START WITH A BRIEF OVERVIEW

1993
01:21:12,440 --> 01:21:13,160
ABOUT THE IMPORTANCE OF FETAL

1994
01:21:13,160 --> 01:21:18,000
DEATH.

1995
01:21:18,000 --> 01:21:19,200
FETAL DEATHS ARE PART OF THE

1996
01:21:19,200 --> 01:21:21,160
CONTINUUM OF PREGNANCY OUTCOMES.

1997
01:21:21,160 --> 01:21:22,680
FETAL LOSS IS OFTEN A

1998
01:21:22,680 --> 01:21:23,680
HEARTBREAKING TRAGEDY FOR WOMEN

1999
01:21:23,680 --> 01:21:28,080
AND FAMILIES TH.

2000
01:21:28,080 --> 01:21:30,920
THE CAUSES OF FETAL DEATH ARE

2001
01:21:30,920 --> 01:21:32,320
POORLY UNDERSTOOD BUT BELIEVED

2002
01:21:32,320 --> 01:21:34,160
TO BE ASSOCIATED WITH FETAL

2003
01:21:34,160 --> 01:21:35,600
INFECTIONS, NON-COMMUNICABLE

2004
01:21:35,600 --> 01:21:36,800
DISEASES, CHROMOSOMAL

2005
01:21:36,800 --> 01:21:40,960
ABNORMALITIES, AND OBSTETRIC

2006
01:21:40,960 --> 01:21:41,600
COMPLICATIONS.

2007
01:21:41,600 --> 01:21:44,000
ALTHOUGH QUITE DATED, BASED ON

2008
01:21:44,000 --> 01:21:46,080
THE NATIONAL SURVEY OF FAMILY

2009
01:21:46,080 --> 01:21:49,760
GROWTH, CONDUCTED BY THE CDC'S

2010
01:21:49,760 --> 01:21:51,640
NATIONAL CENTER FOR HEALTH

2011
01:21:51,640 --> 01:21:53,200
STATISTICS, IT IS ESTIMATED THAT

2012
01:21:53,200 --> 01:21:55,480
IN 2010, THERE WERE MORE THAN

2013
01:21:55,480 --> 01:21:57,360
1 MILLION FETAL LOSSES IN THE

2014
01:21:57,360 --> 01:21:58,960
UNITED STATES, ACCOUNTING FOR

2015
01:21:58,960 --> 01:22:01,920
ABOUT 17% OF ALL PREGNANCIES.

2016
01:22:01,920 --> 01:22:03,440
THE VAST MAJORITY OF THOSE

2017
01:22:03,440 --> 01:22:05,520
LOSSES OCCURRED BEFORE 20 WEEKS

2018
01:22:05,520 --> 01:22:13,080
OF GESTATION.

2019
01:22:13,080 --> 01:22:17,200
AN UPDATED ANALYSIS EXPECTED TO

2020
01:22:17,200 --> 01:22:21,120
BE PUBLISHED LATER THIS YEAR

2021
01:22:21,120 --> 01:22:23,800
THIS MIGHT BE A SLIGHT

2022
01:22:23,800 --> 01:22:24,760
UNDERESTIMATE.

2023
01:22:24,760 --> 01:22:30,080
FETAL GESTATION ARE CONSIDERED,

2024
01:22:30,080 --> 01:22:32,080
SLIGHTLY MORE FETAL DEATHS THAN

2025
01:22:32,080 --> 01:22:33,320
INFANT DEATHS OCCURRED IN THE

2026
01:22:33,320 --> 01:22:36,160
UNITED STATES IN 2020.

2027
01:22:36,160 --> 01:22:38,160
NOW I'LL HIGHLIGHT THE

2028
01:22:38,160 --> 01:22:41,560
IMPORTANCE OF VITAL STATISTICS

2029
01:22:41,560 --> 01:22:44,160
FETAL DEATH DATA.

2030
01:22:44,160 --> 01:22:48,120
VIE VITAL STATISTICS DATA ARE TE

2031
01:22:48,120 --> 01:22:49,960
MOST COMPREHENSIVE SOURCE OF

2032
01:22:49,960 --> 01:22:51,720
U.S. DATA ON FETAL DEATHS AT 20

2033
01:22:51,720 --> 01:22:53,040
WEEKS OF GESTATION OR MORE.

2034
01:22:53,040 --> 01:22:55,080
THE ONLY OTHER NATIONAL SOURCE

2035
01:22:55,080 --> 01:22:57,840
OF INFORMATION ON FETAL DEATHS

2036
01:22:57,840 --> 01:22:59,640
IS THE NATIONAL SURVEY OF FAMILY

2037
01:22:59,640 --> 01:23:01,960
GROWTH, WHICH DOES NOT PROVIDE

2038
01:23:01,960 --> 01:23:03,840
DETAILED INFORMATION ON

2039
01:23:03,840 --> 01:23:06,640
GEOGRAPHY, SMALLER POPULATIONS,

2040
01:23:06,640 --> 01:23:08,720
MEDICAL AND HEALTH INFORMATION,

2041
01:23:08,720 --> 01:23:10,760
OR RELIABLE GESTATIONAL AGE, ALL

2042
01:23:10,760 --> 01:23:17,000
OF WHICH ARE AVAILABLE IN DATA

2043
01:23:17,000 --> 01:23:18,920
IN THE FETAL DEATH REPORT.

2044
01:23:18,920 --> 01:23:21,600
THE STUDY OF FETAL DEATHS CAN

2045
01:23:21,600 --> 01:23:23,920
PROVIDE IMPORTANT CLUES ON HOW

2046
01:23:23,920 --> 01:23:25,000
VARIOUS HEALTH CONDITIONS AND

2047
01:23:25,000 --> 01:23:26,320
RISK FACTORS CAN AFFECT

2048
01:23:26,320 --> 01:23:28,040
PREGNANCY OUTCOMES, IT IS

2049
01:23:28,040 --> 01:23:30,240
IMPORTANT FOR IDENTIFYING

2050
01:23:30,240 --> 01:23:36,120
PREVENTABLE RISKS OF FETAL LOSS.

2051
01:23:36,120 --> 01:23:37,760
NOW I'LL BRIEFLY GO OVER

2052
01:23:37,760 --> 01:23:42,360
DEFINITIONS AND REPORTING

2053
01:23:42,360 --> 01:23:42,920
REQUIREMENTS.

2054
01:23:42,920 --> 01:23:45,880
ACCORDING TO THE MODEL LAW

2055
01:23:45,880 --> 01:23:47,160
DEFINITION, FETAL DEATH IS

2056
01:23:47,160 --> 01:23:49,360
DEFINED AS DEATH PRIOR TO THE

2057
01:23:49,360 --> 01:23:51,320
COMPLETE EXPULSION OR EXTRACTION

2058
01:23:51,320 --> 01:23:55,000
FROM ITS MOTHER OF A PRODUCT OF

2059
01:23:55,000 --> 01:23:56,320
HUMAN CONCEPTION, IRRESPECTIVE

2060
01:23:56,320 --> 01:23:58,400
OF THE DURATION OF PREGNANCY AND

2061
01:23:58,400 --> 01:24:00,280
WHICH IS NOT AN INDUCED

2062
01:24:00,280 --> 01:24:03,320
TERMINATION OF PREGNANCY.

2063
01:24:03,320 --> 01:24:04,960
THE DEATH IS INDICATED BY THE

2064
01:24:04,960 --> 01:24:06,640
FACT THAT AFTER SUCH EXPULSION

2065
01:24:06,640 --> 01:24:10,200
OR EXTRACTION, FETUS DOES NOT

2066
01:24:10,200 --> 01:24:11,280
BREATHE OR SHOW ANY OTHER

2067
01:24:11,280 --> 01:24:12,520
EVIDENCE OF LIFE SUCH AS BEATING

2068
01:24:12,520 --> 01:24:15,680
OF THE HEART, PULSATION OF THE

2069
01:24:15,680 --> 01:24:17,520
UMBILICAL CORD OR DEFINITE

2070
01:24:17,520 --> 01:24:22,640
MOVEMENT OF VOLUNTARY MUSCLES.

2071
01:24:22,640 --> 01:24:24,840
ALL STATES USE DEFINITIONS OF

2072
01:24:24,840 --> 01:24:26,680
FETAL DEATH THAT ARE

2073
01:24:26,680 --> 01:24:27,440
FUNDAMENTALLY CONSISTENT WITH

2074
01:24:27,440 --> 01:24:31,720
THE MODEL LAW.

2075
01:24:31,720 --> 01:24:34,560
MOST STATES REQUIRE REPORTING OF

2076
01:24:34,560 --> 01:24:35,840
FETAL DEATHS OCCURRING AT 20

2077
01:24:35,840 --> 01:24:38,200
WEEKS OF GESTATION OR MORE, OR

2078
01:24:38,200 --> 01:24:40,280
AT A BIRTH WEIGHT OF 350 GRAMS

2079
01:24:40,280 --> 01:24:44,080
OR MORE.

2080
01:24:44,080 --> 01:24:46,440
AS A RESULT, NATIONAL FETAL

2081
01:24:46,440 --> 01:24:48,200
DEATH DATA ARE ONLY AVAILABLE

2082
01:24:48,200 --> 01:24:50,200
FOR FETAL DEATHS AT 20 WEEKS

2083
01:24:50,200 --> 01:24:57,800
GESTATION OR MORE.

2084
01:24:57,800 --> 01:24:59,360
NOW I'LL TALK A BIT ABOUT THE

2085
01:24:59,360 --> 01:25:00,480
HISTORY OF FETAL DEATH REPORTING

2086
01:25:00,480 --> 01:25:04,160
IN THE UNITED STATES.

2087
01:25:04,160 --> 01:25:06,240
HERE YOU'LL SEE A TIMELINE OF

2088
01:25:06,240 --> 01:25:08,280
THE HISTORY OF FETAL DEATH

2089
01:25:08,280 --> 01:25:10,040
REPORTING IN THE U.S. FROM THE

2090
01:25:10,040 --> 01:25:12,240
BEGINNING OF COLLECTION AND

2091
01:25:12,240 --> 01:25:15,560
REPORTING BY THE U.S. CENSUS IN

2092
01:25:15,560 --> 01:25:17,680
1918 TO THE ESTABLISHMENT OF THE

2093
01:25:17,680 --> 01:25:20,320
FIRST U.S. STANDARD FETAL DEATH

2094
01:25:20,320 --> 01:25:23,080
CERTIFICATE IN 1939, TO THE

2095
01:25:23,080 --> 01:25:25,040
MANDATED COLLECTION AND

2096
01:25:25,040 --> 01:25:27,440
PUBLICATION OF VITAL STATISTICS

2097
01:25:27,440 --> 01:25:35,200
DATA BY NCHS IN 1974.

2098
01:25:35,200 --> 01:25:37,720
SINCE 1939, THERE HAVE BEEN FOUR

2099
01:25:37,720 --> 01:25:39,880
REVISIONS OF THE U.S. STANDARD

2100
01:25:39,880 --> 01:25:42,920
FETAL DEATH REPORT.

2101
01:25:42,920 --> 01:25:47,480
INCLUDING 1955, 1978, 1989, AND

2102
01:25:47,480 --> 01:25:49,280
2003.

2103
01:25:49,280 --> 01:25:52,120
BEGINNING WITH 1978, REVISIONS

2104
01:25:52,120 --> 01:25:54,120
WERE DESIGNED TO CAPTURE

2105
01:25:54,120 --> 01:25:55,920
INFORMATION SIMILAR TO THAT ON

2106
01:25:55,920 --> 01:25:58,240
THE BIRTH CERTIFICATE.

2107
01:25:58,240 --> 01:26:00,560
CAUSE OF DEATH DATA HAVE BEEN

2108
01:26:00,560 --> 01:26:04,000
INCLUDED SINCE 1939.

2109
01:26:04,000 --> 01:26:05,200
THE 2003 REVISION WHICH IS THE

2110
01:26:05,200 --> 01:26:09,280
VERSION CURRENTLY IN USE

2111
01:26:09,280 --> 01:26:10,880
EXPANDED THE MEDICAL AND HEALTH

2112
01:26:10,880 --> 01:26:11,880
INFORMATION CAPTURED AND

2113
01:26:11,880 --> 01:26:13,000
MODIFIED THE CAUSE OF DEATH

2114
01:26:13,000 --> 01:26:17,600
SECTION.

2115
01:26:17,600 --> 01:26:18,840
IN REGARD TO MODIFICATIONS FOR

2116
01:26:18,840 --> 01:26:21,280
THE CAUSE OF DEATH ITEM, THE OLD

2117
01:26:21,280 --> 01:26:23,280
DESIGN GUIDED THE CERTIFIER TO

2118
01:26:23,280 --> 01:26:26,240
REPORT THE UNDERLYING CAUSE OR

2119
01:26:26,240 --> 01:26:28,640
CONDITION WHILE THE NEW DESIGN

2120
01:26:28,640 --> 01:26:30,160
PROMPTS THE CERTIFIER TO REPORT

2121
01:26:30,160 --> 01:26:32,440
MORE SPECIFIC CONDITIONS AND

2122
01:26:32,440 --> 01:26:34,200
EXPECTS THEM TO BE ABLE TO

2123
01:26:34,200 --> 01:26:35,960
SEPARATELY REPORT THE INITIATING

2124
01:26:35,960 --> 01:26:38,680
CAUSE OR CONDITION.

2125
01:26:38,680 --> 01:26:39,880
ESSENTIALLY THE SAME THINGS CAN

2126
01:26:39,880 --> 01:26:41,960
BE REPORTED IN EACH FORMAT BUT

2127
01:26:41,960 --> 01:26:48,520
THEY GO DIFFERENT PLACES.

2128
01:26:48,520 --> 01:26:53,560
ON TOP YOU'LL SEE THE -- ON THE

2129
01:26:53,560 --> 01:26:54,880
BOTTOM YOU'LL SEE THE SECTION

2130
01:26:54,880 --> 01:27:03,520
FOR THE 2003 REVISION.

2131
01:27:03,520 --> 01:27:05,120
NOW I WILL TALK TO YOU ABOUT

2132
01:27:05,120 --> 01:27:06,320
TYPES OF FETAL DEATH INFORMATION

2133
01:27:06,320 --> 01:27:09,760
THAT ARE CURRENTLY COLLECTED.

2134
01:27:09,760 --> 01:27:11,920
THE REPORT OF FETAL DEATH

2135
01:27:11,920 --> 01:27:14,200
COLLECTS DIFFERENT KINDS OF

2136
01:27:14,200 --> 01:27:14,640
INFORMATION.

2137
01:27:14,640 --> 01:27:16,360
THIS INCLUDES LEGAL INFORMATION

2138
01:27:16,360 --> 01:27:20,640
SUCH AS NAMES OF PARENTS,

2139
01:27:20,640 --> 01:27:21,880
GRAPHIC INFORMATION SUCH AS AGE,

2140
01:27:21,880 --> 01:27:23,840
RACE AND HISPANIC ORIGIN, AND

2141
01:27:23,840 --> 01:27:27,200
EDUCATION OF THE MOTHER, MEDICAL

2142
01:27:27,200 --> 01:27:28,200
AND HEALTH INFORMATION LIKE

2143
01:27:28,200 --> 01:27:30,840
PRENATAL CARE AND RISK FACTORS

2144
01:27:30,840 --> 01:27:33,040
DURING THE PREGNANCY, AND CAUSE

2145
01:27:33,040 --> 01:27:37,720
OF DEATH INFORMATION.

2146
01:27:37,720 --> 01:27:39,480
WHILE SOMETIMES UNKNOWN, CAUSE

2147
01:27:39,480 --> 01:27:42,200
OF DEATH IS A CRITICAL FACTOR IN

2148
01:27:42,200 --> 01:27:43,400
UNDERSTANDING HOW TO PREVENT

2149
01:27:43,400 --> 01:27:49,000
SUCH LOSSES IN THE FUTURE.

2150
01:27:49,000 --> 01:27:50,520
WE BEGAN TO ROUTINELY RELEASE

2151
01:27:50,520 --> 01:27:52,200
CAUSE OF DEATH DATA BEGINNING IN

2152
01:27:52,200 --> 01:27:56,400
2014.

2153
01:27:56,400 --> 01:27:59,560
WHILE A WEALTH OF FETAL DEATH

2154
01:27:59,560 --> 01:28:00,880
DATA ARE COLLECTED ON THE REPORT

2155
01:28:00,880 --> 01:28:03,080
OF FETAL DEATH, THERE ARE SOME

2156
01:28:03,080 --> 01:28:04,280
CHALLENGES WITH FETAL DEATH

2157
01:28:04,280 --> 01:28:06,240
REPORTING.

2158
01:28:06,240 --> 01:28:10,280
THESE INCLUDE ISSUES SUCH AS,

2159
01:28:10,280 --> 01:28:11,520
MISCLASSIFICATION OF FETAL DEATH

2160
01:28:11,520 --> 01:28:14,360
AS LIVE BIRTH, LIVE BIRTH AS

2161
01:28:14,360 --> 01:28:17,160
FETAL DEATH, AND ABORTION AS

2162
01:28:17,160 --> 01:28:17,960
FETAL DEATH.

2163
01:28:17,960 --> 01:28:19,560
THE LOSS IS A HEARTBREAKING

2164
01:28:19,560 --> 01:28:20,680
RESULT WHICH CAN MAKE IT

2165
01:28:20,680 --> 01:28:23,200
DIFFICULT FOR HOSPITAL STAFF TO

2166
01:28:23,200 --> 01:28:24,640
FOLLOW UP WITH THE GRIEVING

2167
01:28:24,640 --> 01:28:26,600
FAMILY AND COLLECT COMPLETE AND

2168
01:28:26,600 --> 01:28:28,560
ACCURATE DATA.

2169
01:28:28,560 --> 01:28:29,640
FETAL DEATH REPORTS MAY BE

2170
01:28:29,640 --> 01:28:31,040
COMPLETED BY HOSPITAL STAFF WHO

2171
01:28:31,040 --> 01:28:33,040
AREN'T FAMILIAR WITH OR DON'T

2172
01:28:33,040 --> 01:28:36,520
HAVE ACCESS TO THE NECESSARY

2173
01:28:36,520 --> 01:28:36,960
INFORMATION.

2174
01:28:36,960 --> 01:28:38,920
CAUSE OF DEATH MAY BE DIFFICULT

2175
01:28:38,920 --> 01:28:40,800
TO DETERMINE, AND IS FREQUENTLY

2176
01:28:40,800 --> 01:28:41,760
UNKNOWN AT THE TIME THE REPORT

2177
01:28:41,760 --> 01:28:47,240
IS COMPLETED.

2178
01:28:47,240 --> 01:28:49,640
LACK OF RESOURCES FOR VITAL

2179
01:28:49,640 --> 01:28:51,080
STATISTICS IN GENERAL RESULTS IN

2180
01:28:51,080 --> 01:28:53,000
FETAL DEATHS AS LOWER PRIORITY

2181
01:28:53,000 --> 01:28:54,640
AND BIRTHS AND DEATHS AT BOTH

2182
01:28:54,640 --> 01:28:57,000
STATE AND NATIONAL LEVELS.

2183
01:28:57,000 --> 01:28:59,840
LACK OF ELECTRONIC FETAL DEATH

2184
01:28:59,840 --> 01:29:03,440
REGISTRATION SYSTEMS ACROSS

2185
01:29:03,440 --> 01:29:04,280
JURISDICTIONS.

2186
01:29:04,280 --> 01:29:06,080
SMALL NUMBER OF EVENTS BY STATE

2187
01:29:06,080 --> 01:29:08,080
MAKE IT DIFFICULT TO RELIABLY

2188
01:29:08,080 --> 01:29:10,360
TRACK AND DESCRIBE FETAL DEATHS

2189
01:29:10,360 --> 01:29:11,880
AT THE STATE AND SOMETIMES AT

2190
01:29:11,880 --> 01:29:15,160
THE NATIONAL LEVEL.

2191
01:29:15,160 --> 01:29:16,720
AND SOME UNDERREPORTING OF

2192
01:29:16,720 --> 01:29:18,680
EVENTS AT EARLIER GESTATIONAL

2193
01:29:18,680 --> 01:29:20,840
AGES, FOR EXAMPLE, JURISDICTIONS

2194
01:29:20,840 --> 01:29:23,280
WHICH REPORT AT GESTATIONAL AGES

2195
01:29:23,280 --> 01:29:26,680
LESS THAN 20 WEEKS TEND TO

2196
01:29:26,680 --> 01:29:28,200
APPEAR TO HAVE MORE COMPLETE

2197
01:29:28,200 --> 01:29:30,200
REPORTING AT 20 TO 23 WEEKS.

2198
01:29:30,200 --> 01:29:33,040
AND AS A RESULT, THERE IS WIDE

2199
01:29:33,040 --> 01:29:38,520
VARIABILITY IN DATA QUALITY BY

2200
01:29:38,520 --> 01:29:38,840
JURISDICTION.

2201
01:29:38,840 --> 01:29:39,840
AS A RESULT OF THE

2202
01:29:39,840 --> 01:29:41,480
AFOREMENTIONED CHALLENGES OF

2203
01:29:41,480 --> 01:29:43,200
COLLECTING FETAL DEATH DATA, WE

2204
01:29:43,200 --> 01:29:44,720
DO EXPERIENCE SOME DATA QUALITY

2205
01:29:44,720 --> 01:29:49,760
ISSUES.

2206
01:29:49,760 --> 01:29:51,720
FOR EXAMPLE, THE UNKNOWN LEVEL

2207
01:29:51,720 --> 01:29:53,800
FOR A GIVEN ITEM IS USUALLY

2208
01:29:53,800 --> 01:29:56,000
HIGHER FOR FETAL DEATHS IN

2209
01:29:56,000 --> 01:29:58,320
COMPARISON WITH BIRTHS.

2210
01:29:58,320 --> 01:30:00,400
HERE YOU'LL SEE THAT FOR

2211
01:30:00,400 --> 01:30:01,800
GESTATIONAL AGE, ALTHOUGH THE

2212
01:30:01,800 --> 01:30:04,520
DIFFERENCE IS RELATIVELY SMALL,

2213
01:30:04,520 --> 01:30:05,800
FETAL DEATHS HAVE AN UNKNOWN

2214
01:30:05,800 --> 01:30:10,520
RATE OF 0.7% COMPARED WITH 0.1%

2215
01:30:10,520 --> 01:30:12,520
FOR BIRTHS.

2216
01:30:12,520 --> 01:30:13,920
FOR OTHER ITEMS, THE DIFFERENCES

2217
01:30:13,920 --> 01:30:17,640
ARE LARGER, SUCH AS 7.1%

2218
01:30:17,640 --> 01:30:22,200
COMPARED WITH 0.1% FOR BIRTH

2219
01:30:22,200 --> 01:30:25,520
WEIGHT, 11.9% COMPARED WITH 3.9%

2220
01:30:25,520 --> 01:30:27,920
FOR DATE OF FIRST PRENATAL CARE

2221
01:30:27,920 --> 01:30:31,960
VISIT MONTH, AND 5.6% COMPARED

2222
01:30:31,960 --> 01:30:33,680
WITH 0.1% FOR GESTATIONAL

2223
01:30:33,680 --> 01:30:38,520
DIABETES.

2224
01:30:38,520 --> 01:30:40,160
ADDITIONALLY, UNKNOWN LEVELS CAN

2225
01:30:40,160 --> 01:30:42,240
RANGE WIDELY BOTH BY ITEM AND BY

2226
01:30:42,240 --> 01:30:44,320
REPORTED AREA.

2227
01:30:44,320 --> 01:30:46,200
FOR EXAMPLE, HERE YOU'LL SEE

2228
01:30:46,200 --> 01:30:49,080
UNKNOWN LEVELS FOR MOTHERS

2229
01:30:49,080 --> 01:30:52,720
EDUCATION FOR THE 50 STATES IN

2230
01:30:52,720 --> 01:30:53,440
THE DISTRICT OF COLUMBIA IN NEW

2231
01:30:53,440 --> 01:30:56,240
YORK CITY FOR 2020.

2232
01:30:56,240 --> 01:30:57,360
AT ONE EXTREME, ONE REPORTING

2233
01:30:57,360 --> 01:31:01,080
AREA HAS AN UNKNOWN LEVEL OF

2234
01:31:01,080 --> 01:31:03,360
69.8% AND AT THE OTHER, THREE

2235
01:31:03,360 --> 01:31:11,360
HAVE AN UNKNOWN LEVEL OF 0%.

2236
01:31:11,360 --> 01:31:12,560
UNSPECIFIED CAUSE OF FETAL DEATH

2237
01:31:12,560 --> 01:31:14,200
IS ALSO OF CONCERN.

2238
01:31:14,200 --> 01:31:16,040
LEVELS ARE EXPECTED TO BE HIGH

2239
01:31:16,040 --> 01:31:19,320
BUT THERE IS A LARGE RANGE AMONG

2240
01:31:19,320 --> 01:31:20,560
STATES.

2241
01:31:20,560 --> 01:31:22,640
IN OUR REPORTS, WE PUBLISHED

2242
01:31:22,640 --> 01:31:24,600
DATA ON REPORTING AREAS WHERE

2243
01:31:24,600 --> 01:31:27,120
CAUSE OF DEATH WAS BASED ON A

2244
01:31:27,120 --> 01:31:29,520
2003 FETAL DEATH REPORT REVISION

2245
01:31:29,520 --> 01:31:32,240
AND LESS THAN 50% OF DEATHS WERE

2246
01:31:32,240 --> 01:31:34,120
ATTRIBUTED TO FETAL DEATH OF

2247
01:31:34,120 --> 01:31:36,520
UNSPECIFIED CAUSE.

2248
01:31:36,520 --> 01:31:39,240
HERE, FOR 2020, YOU'LL SEE THAT

2249
01:31:39,240 --> 01:31:43,000
43 STATES IN THE DISTRICT OF

2250
01:31:43,000 --> 01:31:43,520
COLUMBIA MEET THESE

2251
01:31:43,520 --> 01:31:44,280
REQUIREMENTS.

2252
01:31:44,280 --> 01:31:47,920
SOME REPORTING AREAS BOUNCE

2253
01:31:47,920 --> 01:31:49,440
AROUND BUT 50% REPORTING

2254
01:31:49,440 --> 01:31:54,120
THRESHOLD FROM YEAR TO YEAR.

2255
01:31:54,120 --> 01:31:55,560
OVER THE YEARS, WE HAVE

2256
01:31:55,560 --> 01:31:57,480
IMPLEMENTED MANY DATA QUALITY

2257
01:31:57,480 --> 01:31:58,600
IMPROVEMENT EFFORTS TO HELP

2258
01:31:58,600 --> 01:32:03,120
ADDRESS THESE ISSUES.

2259
01:32:03,120 --> 01:32:05,840
FIRST THERE WAS THE 2003

2260
01:32:05,840 --> 01:32:06,960
REVISION OF THE REPORT OF FETAL

2261
01:32:06,960 --> 01:32:08,360
DEATH.

2262
01:32:08,360 --> 01:32:10,080
THE MAJOR FOCUS OF THE REVISION

2263
01:32:10,080 --> 01:32:12,840
WAS TO IMPROVE DATA QUALITY BY

2264
01:32:12,840 --> 01:32:14,480
COLLECTING ONLY ITEMS

2265
01:32:14,480 --> 01:32:17,400
ANTICIPATED TO BE OF GOOD

2266
01:32:17,400 --> 01:32:19,400
QUALITY, STANDARDIZING AND

2267
01:32:19,400 --> 01:32:21,360
PROMULGATING ITEM DEFINITIONS

2268
01:32:21,360 --> 01:32:23,240
AND JURISDICTIONAL ELECTRONIC

2269
01:32:23,240 --> 01:32:25,520
BIRTH REGISTRATION SYSTEMS,

2270
01:32:25,520 --> 01:32:28,360
COLLECTING DATA FROM THE BEST

2271
01:32:28,360 --> 01:32:31,080
SOURCES, CREATING SEPARATE

2272
01:32:31,080 --> 01:32:32,080
WORKSHEETS, BOTH PATIENT AND

2273
01:32:32,080 --> 01:32:33,320
FACILITY WORKSHEET AND IMPROVING

2274
01:32:33,320 --> 01:32:38,640
THE CAUSE OF DEATH SECTION.

2275
01:32:38,640 --> 01:32:40,600
FOR THE WORKSHEETS, THE

2276
01:32:40,600 --> 01:32:42,480
INFORMATION ON THE PATIENT'S

2277
01:32:42,480 --> 01:32:43,680
WORKSHEET WHICH CONTAINS LEGAL

2278
01:32:43,680 --> 01:32:47,040
AND DEMOGRAPHIC INFORMATION TO

2279
01:32:47,040 --> 01:32:48,960
COME FROM THE MOTHER, THE

2280
01:32:48,960 --> 01:32:50,240
INFORMATION ON A FACILITY

2281
01:32:50,240 --> 01:32:53,080
WORKSHEET WHICH CONTAINS MEDICAL

2282
01:32:53,080 --> 01:32:53,840
AND HEALTH INFORMATION SHOULD

2283
01:32:53,840 --> 01:32:55,200
COME FROM THE MEDICAL RECORDS

2284
01:32:55,200 --> 01:32:59,960
AND THE CLINICIAN.

2285
01:32:59,960 --> 01:33:01,480
AS I MENTIONED BEFORE, THE CAUSE

2286
01:33:01,480 --> 01:33:04,440
OF DEATH SECTION OF THE U.S.

2287
01:33:04,440 --> 01:33:05,680
STANDARD REPORT OF FETAL DEATH

2288
01:33:05,680 --> 01:33:09,080
WAS REDESIGNED WITH A 2003

2289
01:33:09,080 --> 01:33:09,360
REVISION.

2290
01:33:09,360 --> 01:33:11,760
THE GOAL OF THE REDESIGN WAS TO

2291
01:33:11,760 --> 01:33:14,960
IMPROVE THE QUALITY AND

2292
01:33:14,960 --> 01:33:15,600
SPECIFICITY OF INFORMATION

2293
01:33:15,600 --> 01:33:17,480
REPORTED FOR CAUSE OF DEATH.

2294
01:33:17,480 --> 01:33:19,440
IT WAS DESIGNED TO BE CONSISTENT

2295
01:33:19,440 --> 01:33:23,600
WITH DATA COLLECTION

2296
01:33:23,600 --> 01:33:25,120
INSTRUCTIONS IN THE WORLD HEALTH

2297
01:33:25,120 --> 01:33:26,360
ORGANIZATION'S INTERNATIONAL

2298
01:33:26,360 --> 01:33:27,840
STATISTICAL CLASSIFICATION OF

2299
01:33:27,840 --> 01:33:32,040
DISEASES AND RELATED HEALTH

2300
01:33:32,040 --> 01:33:33,080
PROBLEMS REVISION WHILE

2301
01:33:33,080 --> 01:33:34,880
PROVIDING MORE GUIDANCE ON

2302
01:33:34,880 --> 01:33:35,760
DESIRED INFORMATION AND

2303
01:33:35,760 --> 01:33:36,720
RETAINING FLEXIBILITY TO REPORT

2304
01:33:36,720 --> 01:33:43,600
ANY CAUSE.

2305
01:33:43,600 --> 01:33:45,240
ADDITIONALLY, IN 2014 FOLLOWING

2306
01:33:45,240 --> 01:33:47,120
AN EXTENSIVE REVIEW, 36 ITEMS

2307
01:33:47,120 --> 01:33:50,760
WERE ULTIMATELY DROPPED FROM THE

2308
01:33:50,760 --> 01:33:52,160
NATIONAL FETAL DEATH FILE DUE TO

2309
01:33:52,160 --> 01:33:54,600
POOR DATA QUALITY AND/OR A LACK

2310
01:33:54,600 --> 01:33:55,880
OF POTENTIAL FOR IMPROVEMENT.

2311
01:33:55,880 --> 01:33:58,800
THE GOAL WAS TO IMPROVE THE

2312
01:33:58,800 --> 01:34:00,680
QUALITY OF REMAINING ITEMS,

2313
01:34:00,680 --> 01:34:02,440
ESPECIALLY FETAL CAUSE OF DEATH

2314
01:34:02,440 --> 01:34:03,040
DATA.

2315
01:34:03,040 --> 01:34:04,800
THIS CHANGE WAS IMPLEMENTED TO

2316
01:34:04,800 --> 01:34:07,160
THE NATIONAL FILE BEGINNING WITH

2317
01:34:07,160 --> 01:34:11,520
THE 2014 DATA YEAR.

2318
01:34:11,520 --> 01:34:13,080
WE'VE ALSO DEVELOPED SOME

2319
01:34:13,080 --> 01:34:15,560
RESOURCES TO HELP FACILITATE

2320
01:34:15,560 --> 01:34:20,520
IMPROVEMENTS IN DATA QUALITY.

2321
01:34:20,520 --> 01:34:22,800
FOR EXAMPLE, THIS IS A DECISION

2322
01:34:22,800 --> 01:34:24,640
TREE THAT WAS DEVELOPED TO

2323
01:34:24,640 --> 01:34:27,040
OUTLINE GUIDELINES FOR REPORTING

2324
01:34:27,040 --> 01:34:29,800
LIVE BIRTHS, FETAL DEATHS, AND

2325
01:34:29,800 --> 01:34:30,760
INDUCED TERMINATIONS OF

2326
01:34:30,760 --> 01:34:35,480
PREGNANCY.

2327
01:34:35,480 --> 01:34:37,560
HERE IS THE GUIDE TO COMPLETING

2328
01:34:37,560 --> 01:34:41,280
THE FACILITY WORKSHEETS WITH A

2329
01:34:41,280 --> 01:34:43,560
CERTIFICATE OF LIVE BIRTH AND

2330
01:34:43,560 --> 01:34:44,880
REPORT OF FETAL DEATH, WHICH WAS

2331
01:34:44,880 --> 01:34:45,760
DEVELOPED TO ASSIST IN

2332
01:34:45,760 --> 01:34:46,840
COMPLETING THE FACILITY

2333
01:34:46,840 --> 01:34:48,880
WORKSHEETS FOR THE REVISED

2334
01:34:48,880 --> 01:34:50,160
CERTIFICATE OF LIVE BIRTH AND

2335
01:34:50,160 --> 01:34:52,680
REPORT OF FETAL DEATH.

2336
01:34:52,680 --> 01:34:55,160
IT PROVIDES DEFINITIONS,

2337
01:34:55,160 --> 01:34:57,160
INSTRUCTIONS, SOURCES, AND

2338
01:34:57,160 --> 01:34:58,680
COMMON ABBREVIATIONS AND

2339
01:34:58,680 --> 01:35:00,320
ACRONYMS FOR ITEMS ON THE

2340
01:35:00,320 --> 01:35:02,520
FACILITY WORKSHEETS OF THE

2341
01:35:02,520 --> 01:35:04,080
CERTIFICATE OF LIVE BIRTH AND

2342
01:35:04,080 --> 01:35:10,280
REPORT OF FETAL DEATH.

2343
01:35:10,280 --> 01:35:11,400
E-LEARNING TRAINING WAS

2344
01:35:11,400 --> 01:35:12,920
DEVELOPED FOR CLINICAL AND

2345
01:35:12,920 --> 01:35:15,120
NON-CLINICAL STAFF AT HOSPITALS

2346
01:35:15,120 --> 01:35:18,480
OR FREE-STANDING -- CENTERS WHO

2347
01:35:18,480 --> 01:35:19,920
ARE RESPONSIBLE FOR COMPLETING

2348
01:35:19,920 --> 01:35:22,120
THE MEDICAL AND HEALTH

2349
01:35:22,120 --> 01:35:23,200
INFORMATION FOR THE CERTIFICATE

2350
01:35:23,200 --> 01:35:24,880
OF LIVE BIRTH AND REPORT OF

2351
01:35:24,880 --> 01:35:25,920
FETAL DEATH.

2352
01:35:25,920 --> 01:35:27,760
IT WAS DESIGNED TO INCREASE

2353
01:35:27,760 --> 01:35:30,960
KNOWLEDGE OF THE IMPORTANCE OF

2354
01:35:30,960 --> 01:35:32,960
AND BEST PRACTICES FOR REPORTING

2355
01:35:32,960 --> 01:35:34,800
BIRTH CERTIFICATE AND REPORT OF

2356
01:35:34,800 --> 01:35:37,000
FETAL DEATH INFORMATION,

2357
01:35:37,000 --> 01:35:38,760
INCLUDING INSTRUCTIONS ON HOW TO

2358
01:35:38,760 --> 01:35:41,400
COMPLETE THE CAUSE OF DEATH

2359
01:35:41,400 --> 01:35:46,000
SECTION ON THE REPORT OF FETAL

2360
01:35:46,000 --> 01:35:47,120
DEATH.

2361
01:35:47,120 --> 01:35:50,480
THE MEDICAL EXAMINERS AND

2362
01:35:50,480 --> 01:35:51,560
CORONER'S HANDBOOK ON DEATH

2363
01:35:51,560 --> 01:35:52,680
REGISTRATION AND FETAL DEATH IS

2364
01:35:52,680 --> 01:35:55,080
MEANT TO HELP THE ATTENDANT AT

2365
01:35:55,080 --> 01:35:56,680
DELIVERY OR THE MEDICAL EXAMINER

2366
01:35:56,680 --> 01:35:58,920
OR CORONER WHO IS RESPONSIBLE

2367
01:35:58,920 --> 01:36:03,320
FOR REPORTING THE CAUSE OF FETAL

2368
01:36:03,320 --> 01:36:04,720
DEATH PROVIDE HIS OR HER BEST

2369
01:36:04,720 --> 01:36:05,960
MEDICAL OPINION IN THE CAUSE OF

2370
01:36:05,960 --> 01:36:08,440
DEATH SECTION.

2371
01:36:08,440 --> 01:36:09,640
ADDITIONALLY, THE CAUSE OF FETAL

2372
01:36:09,640 --> 01:36:12,400
DEATH SHOULD REFLECT INFORMATION

2373
01:36:12,400 --> 01:36:15,240
FROM AUTOPSY OR OTHER TYPES OF

2374
01:36:15,240 --> 01:36:20,160
POSTMORTEM EXAMINATIONS

2375
01:36:20,160 --> 01:36:20,720
PERFORMED.

2376
01:36:20,720 --> 01:36:23,680
SOME FUTURE IMPROVEMENT EFFORTS

2377
01:36:23,680 --> 01:36:24,880
INCLUDE ASSESSING THE MORE

2378
01:36:24,880 --> 01:36:25,960
LIMITED ITEM REPORTING IS HAVING

2379
01:36:25,960 --> 01:36:28,920
A POSITIVE IMPACT ON DATA

2380
01:36:28,920 --> 01:36:30,360
QUALITY, ASSESSING THE

2381
01:36:30,360 --> 01:36:32,440
USEFULNESS OF FETAL CAUSE OF

2382
01:36:32,440 --> 01:36:34,200
DEATH DATA AND THE POTENTIAL FOR

2383
01:36:34,200 --> 01:36:36,960
IMPROVEMENT OF IT, DEVELOPING

2384
01:36:36,960 --> 01:36:38,800
ENHANCED TRAINING FOR DATA

2385
01:36:38,800 --> 01:36:40,320
PROVIDERS AND DEVELOPING MORE

2386
01:36:40,320 --> 01:36:42,840
COMPLETE TRAINING OR COMPLETE --

2387
01:36:42,840 --> 01:36:46,360
FOR COMPLETING CAUSE OF DEATH,

2388
01:36:46,360 --> 01:36:47,520
DEVELOPING STANDARDIZED

2389
01:36:47,520 --> 01:36:49,120
ELECTRONIC SYSTEMS THAT CAN BE

2390
01:36:49,120 --> 01:36:52,040
SHARED ACROSS JURISDICTIONS

2391
01:36:52,040 --> 01:36:55,360
WHICH CAN HELP SAVE ON COSTS,

2392
01:36:55,360 --> 01:36:58,440
AND AUTOMATING TRANSFER OF DATA

2393
01:36:58,440 --> 01:36:59,480
FROM HOSPITAL MEDICAL RECORDS TO

2394
01:36:59,480 --> 01:37:02,800
THE STATE SYSTEMS.

2395
01:37:02,800 --> 01:37:06,960
NOW I'LL TALK ABOUT AVAILABILITY

2396
01:37:06,960 --> 01:37:10,560
OF FETAL DEATH DATA.

2397
01:37:10,560 --> 01:37:12,440
WE NOW ROUTINELY PUBLISH THREE

2398
01:37:12,440 --> 01:37:14,960
STANDARD REPORT ON FETAL DEATH

2399
01:37:14,960 --> 01:37:15,280
DATA.

2400
01:37:15,280 --> 01:37:18,840
THIS INCLUDES AN ANNUAL FETAL

2401
01:37:18,840 --> 01:37:19,880
MORTALITY REPORT, IT INCLUDES

2402
01:37:19,880 --> 01:37:24,000
CAUSE OF DEATH DATA, TRIENNIAL

2403
01:37:24,000 --> 01:37:25,640
FETAL CAUSE OF DEATH-SPECIFIC

2404
01:37:25,640 --> 01:37:28,320
FETAL MORTALITY REPORT, AND A

2405
01:37:28,320 --> 01:37:31,720
BIENNIAL PERINATAL MORTALITY

2406
01:37:31,720 --> 01:37:33,240
REPORT.

2407
01:37:33,240 --> 01:37:34,280
WE ALSO SOMETIMES RELEASE

2408
01:37:34,280 --> 01:37:34,720
SPECIAL REPORT.

2409
01:37:34,720 --> 01:37:37,960
FOR EXAMPLE, THE RESPONSE TO THE

2410
01:37:37,960 --> 01:37:40,400
NEED FOR MORE TIMELY DATA DUE TO

2411
01:37:40,400 --> 01:37:42,040
THE COVID-19 PANDEMIC.

2412
01:37:42,040 --> 01:37:44,640
WE'VE BEGUN RELEASING

2413
01:37:44,640 --> 01:37:45,920
PROVISIONAL FETAL MORTALITY

2414
01:37:45,920 --> 01:37:49,280
REPORTS WHICH ARE DUE TO BE

2415
01:37:49,280 --> 01:37:56,360
RELEASED LATER THIS YEAR.

2416
01:37:56,360 --> 01:37:59,520
ANNUAL FETAL DEATH DATA ARE

2417
01:37:59,520 --> 01:38:00,640
AVAILABLE ON OUR WEBSITE.

2418
01:38:00,640 --> 01:38:03,480
FETAL DEATH DATA ARE ALSO

2419
01:38:03,480 --> 01:38:09,080
AVAILABLE ON CDC -- FOR 2005 TO

2420
01:38:09,080 --> 01:38:11,560
2020, CAUSE OF DEATH DATA

2421
01:38:11,560 --> 01:38:14,200
INCLUDED FOR 2014 AND LATER.

2422
01:38:14,200 --> 01:38:16,720
NOW I'LL TALK ABOUT TRENDS AND

2423
01:38:16,720 --> 01:38:17,720
SELECTED CHARACTERISTICS OF

2424
01:38:17,720 --> 01:38:19,360
FETAL DEATHS IN THE UNITED

2425
01:38:19,360 --> 01:38:22,000
STATES FOR 2020.

2426
01:38:22,000 --> 01:38:23,760
AS I MENTIONED EARLIER, NATIONAL

2427
01:38:23,760 --> 01:38:25,720
DATA ON FETAL DEATHS ONLY

2428
01:38:25,720 --> 01:38:29,320
INCLUDES THOSE AT 20 WEEKS OF

2429
01:38:29,320 --> 01:38:32,040
GESTATION OR MORE.

2430
01:38:32,040 --> 01:38:34,040
WITH MINOR FLUCTUATIONS, THE

2431
01:38:34,040 --> 01:38:35,680
TOTAL U.S. FETAL MORTALITY RATE

2432
01:38:35,680 --> 01:38:39,760
HAS DECLINED 23% SINCE 1990.

2433
01:38:39,760 --> 01:38:44,360
WHEN THE RATE WAS 7.49.

2434
01:38:44,360 --> 01:38:49,000
IN 2020, 20,854 FETAL DEATHS AT

2435
01:38:49,000 --> 01:38:50,560
20 WEEKS OF GESTATION OR MORE

2436
01:38:50,560 --> 01:38:51,720
WERE REPORTED IN THE UNITED

2437
01:38:51,720 --> 01:38:55,000
STATES.

2438
01:38:55,000 --> 01:38:57,760
THE FETAL MORTALITY RATE WAS

2439
01:38:57,760 --> 01:38:59,120
5.74 FETAL DEATHS AT 20 WEEKS OF

2440
01:38:59,120 --> 01:39:02,240
GESTATION OR MORE PER 1,000 LIVE

2441
01:39:02,240 --> 01:39:05,160
BIRTHS AND FETAL DEATHS IN 2020,

2442
01:39:05,160 --> 01:39:06,920
WHICH WAS NOT SIGNIFICANTLY

2443
01:39:06,920 --> 01:39:08,640
DIFFERENT FROM THE RATE OF 5.7

2444
01:39:08,640 --> 01:39:13,120
SEER OLE IN 2019.

2445
01:39:13,120 --> 01:39:13,720
 5.70

2446
01:39:13,720 --> 01:39:14,120
IN 2019.

2447
01:39:14,120 --> 01:39:15,560
HERE ON A DIFFERENT SCALE,

2448
01:39:15,560 --> 01:39:18,280
YOU'LL SEE TRENDS FOR EARLY

2449
01:39:18,280 --> 01:39:19,280
FETAL MORTALITY.

2450
01:39:19,280 --> 01:39:21,640
THE NUMBER OF FETAL DEATHS AT 20

2451
01:39:21,640 --> 01:39:24,040
TO 27 WEEKS OF GESTATION PER

2452
01:39:24,040 --> 01:39:26,360
1,000 LIVE BIRTHS IN FETAL

2453
01:39:26,360 --> 01:39:31,000
DEATHS AT 27 WEEKS OF GESTATION,

2454
01:39:31,000 --> 01:39:32,320
AND LATE FETAL MORTALITY, THE

2455
01:39:32,320 --> 01:39:33,960
NUMBER OF FETAL DEATHS AT 28

2456
01:39:33,960 --> 01:39:39,280
WEEKS OF GESTATION OR MORE FOR

2457
01:39:39,280 --> 01:39:40,680
1,000 LIVE BIRTHS AND FETAL

2458
01:39:40,680 --> 01:39:42,160
DEATHS AT 28 WEEKS OF GESTATION

2459
01:39:42,160 --> 01:39:45,400
OR MORE, WI FROM 2014 TO 2020.

2460
01:39:45,400 --> 01:39:48,120
THIS IS BECAUSE BEGINNING IN

2461
01:39:48,120 --> 01:39:49,440
2014, WE SWITCHED FROM THE DATE

2462
01:39:49,440 --> 01:39:54,040
OF THE LAST NORMAL MENSES TO THE

2463
01:39:54,040 --> 01:39:55,800
OBSTETRIC ESTIMATE OF THE

2464
01:39:55,800 --> 01:39:56,760
PRIMARY MEASURE OF GESTATIONAL

2465
01:39:56,760 --> 01:39:58,560
AGE, WHICH CREATED A

2466
01:39:58,560 --> 01:39:59,760
DISCONTINUITY IN BOTH THE EARLY

2467
01:39:59,760 --> 01:40:03,520
AND LATE FETAL MORTALITY RATES.

2468
01:40:03,520 --> 01:40:05,800
IN 2020, THE EARLY FETAL

2469
01:40:05,800 --> 01:40:08,880
MORTALITY RATE WAS 2.97.

2470
01:40:08,880 --> 01:40:13,080
THIS RATE HAS DECLINED 6% SINCE

2471
01:40:13,080 --> 01:40:13,480
2014.

2472
01:40:13,480 --> 01:40:16,960
THE LATE FETAL MORTALITY RATE

2473
01:40:16,960 --> 01:40:18,280
WAS 2.78 IN 2020.

2474
01:40:18,280 --> 01:40:25,040
THIS RATE HAS BEEN STABLE SINCE

2475
01:40:25,040 --> 01:40:25,840
2014.

2476
01:40:25,840 --> 01:40:27,360
IN 2020, FETAL MORTALITY RATES

2477
01:40:27,360 --> 01:40:29,560
CONTINUE TO VARY BY RACE AND

2478
01:40:29,560 --> 01:40:31,880
HISPANIC ORIGIN.

2479
01:40:31,880 --> 01:40:37,120
WHITES WRATES WERE HIGHEST FOR

2480
01:40:37,120 --> 01:40:38,560
NON-HISPANIC -- AND NON-HISPANIC

2481
01:40:38,560 --> 01:40:40,760
BLACK WOMEN FOLLOWED BY

2482
01:40:40,760 --> 01:40:42,920
NON-HISPANIC AMERICAN INDIAN OR

2483
01:40:42,920 --> 01:40:44,040
ALASKA NATIVE WOMEN.

2484
01:40:44,040 --> 01:40:46,000
THE RATE WAS LOWEST FOR

2485
01:40:46,000 --> 01:40:47,320
NON-HISPANIC ASIAN WOMEN

2486
01:40:47,320 --> 01:40:49,080
FOLLOWED BY NON-HISPANIC WHITE

2487
01:40:49,080 --> 01:40:55,320
AND HISPANIC WOMEN.

2488
01:40:55,320 --> 01:40:57,720
IN 2020, BY HISPANIC SUBGROUP,

2489
01:40:57,720 --> 01:41:01,440
RATES RANGE FROM 4.41 FOR

2490
01:41:01,440 --> 01:41:04,600
DOMINICAN WOMEN TO 5.87 FOR

2491
01:41:04,600 --> 01:41:06,200
OTHER AND UNKNOWN HISPANIC

2492
01:41:06,200 --> 01:41:07,160
WOMEN.

2493
01:41:07,160 --> 01:41:08,360
HOWEVER, DIFFERENCES AMONG THE

2494
01:41:08,360 --> 01:41:10,600
GROUPS WERE GENERALLY NOT

2495
01:41:10,600 --> 01:41:15,280
SIGNIFICANT.

2496
01:41:15,280 --> 01:41:17,680
FETAL MORTALITY RATES VARIED BY

2497
01:41:17,680 --> 01:41:19,640
MATERNAL AGE AND WERE HIGHEST

2498
01:41:19,640 --> 01:41:22,480
FOR FEMALES UNDER 15 AND THOSE

2499
01:41:22,480 --> 01:41:24,160
AGED 45 AND OVER, AND LOWEST FOR

2500
01:41:24,160 --> 01:41:28,040
WOMEN AGED 25 TO 29 AND 30 TO

2501
01:41:28,040 --> 01:41:32,120
34.

2502
01:41:32,120 --> 01:41:34,360
BY GESTATIONAL AGE, THE FETAL

2503
01:41:34,360 --> 01:41:36,760
MORTALITY RATE WAS HIGHEST AT 20

2504
01:41:36,760 --> 01:41:39,520
TO 23 WEEKS OF GESTATION,

2505
01:41:39,520 --> 01:41:42,800
DECLINED TO A LOW AT 39 TO 40

2506
01:41:42,800 --> 01:41:45,080
AND 41 WEEKS OF GESTATION, AND

2507
01:41:45,080 --> 01:41:47,720
THEN INCREASED AT 42 WEEKS OF

2508
01:41:47,720 --> 01:41:52,760
GESTATION OR MORE.

2509
01:41:52,760 --> 01:41:54,680
BY BIRTH WEIGHT, THE FETAL

2510
01:41:54,680 --> 01:41:56,800
MORTALITY RATE WAS HIGHEST FOR

2511
01:41:56,800 --> 01:42:01,200
FETUSES WEIGHING LESS THAN

2512
01:42:01,200 --> 01:42:03,600
500 GRAMS, AND DECREASED WITH

2513
01:42:03,600 --> 01:42:05,480
INCREASING BIRTH WEIGHT TO A LOW

2514
01:42:05,480 --> 01:42:09,840
FOR FETUSES WEIGHTING 3,500 TO

2515
01:42:09,840 --> 01:42:10,280
3,999 GRAMS.

2516
01:42:10,280 --> 01:42:12,360
FETAL MORTALITY RATES THEN

2517
01:42:12,360 --> 01:42:15,120
INCREASED SLIGHTLY FOR FETUSES

2518
01:42:15,120 --> 01:42:21,240
WEIGHING 4,000 GRAMS OR MORE.

2519
01:42:21,240 --> 01:42:22,840
HERE ARE DATA ON A FEW OTHER

2520
01:42:22,840 --> 01:42:25,080
CHARACTERISTICS SUCH AS SEX OF

2521
01:42:25,080 --> 01:42:27,080
FETUS, TOBACCO USE DURING

2522
01:42:27,080 --> 01:42:29,120
PREGNANCY, AND PLURALITY.

2523
01:42:29,120 --> 01:42:31,000
FOR THESE CHARACTERISTICS, WE

2524
01:42:31,000 --> 01:42:33,880
FOUND THAT THE FETAL MORTALITY

2525
01:42:33,880 --> 01:42:36,520
RATE FOR MALE FETUSES WAS 5%

2526
01:42:36,520 --> 01:42:38,360
HIGHER THAN THE RATE FOR FEMALE

2527
01:42:38,360 --> 01:42:38,800
FETUSES.

2528
01:42:38,800 --> 01:42:40,120
THE FETAL MORTALITY RATE FOR

2529
01:42:40,120 --> 01:42:43,400
WOMEN WHO SMOKE DURING PREGNANCY

2530
01:42:43,400 --> 01:42:44,720
WAS MORE THAN ONE AND ONE HALF

2531
01:42:44,720 --> 01:42:45,880
TIMES HIGHER THAN THE RATE FOR

2532
01:42:45,880 --> 01:42:49,680
WOMEN WHO DID NOT SMOKE DURING

2533
01:42:49,680 --> 01:42:50,000
PREGNANCY.

2534
01:42:50,000 --> 01:42:51,760
AND THE FETAL MORTALITY RATE FOR

2535
01:42:51,760 --> 01:42:53,480
TWINS WAS MORE THAN TWICE THAT

2536
01:42:53,480 --> 01:42:55,400
FOR SINGLETONS.

2537
01:42:55,400 --> 01:42:57,800
THE RATE FOR TRIP LET OR HIGHER

2538
01:42:57,800 --> 01:43:00,520
ORDER DELIVERIES WHICH IS NOT

2539
01:43:00,520 --> 01:43:02,840
SHOWN WAS 28.72, WHICH IS MORE

2540
01:43:02,840 --> 01:43:04,280
THAN FIVE TIMES THAT FOR

2541
01:43:04,280 --> 01:43:09,680
SINGLETONS.

2542
01:43:09,680 --> 01:43:10,960
THERE ARE SOME SMALL DIFFERENCES

2543
01:43:10,960 --> 01:43:13,720
IN REPORTING REQUIREMENTS AROUND

2544
01:43:13,720 --> 01:43:16,560
20 WEEKS BY STATE, AND THE

2545
01:43:16,560 --> 01:43:17,760
ANNUAL NUMBER OF FETAL DEATHS

2546
01:43:17,760 --> 01:43:19,400
FOR SOME STATES CAN BE SMALL.

2547
01:43:19,400 --> 01:43:21,720
TO TRY TO ADDRESS THESE ISSUES,

2548
01:43:21,720 --> 01:43:24,200
HERE YOU'LL SEE FETAL MORTALITY

2549
01:43:24,200 --> 01:43:26,400
RATES BY STATE FOR FETAL DEATHS

2550
01:43:26,400 --> 01:43:29,160
AT 24 WEEKS OF GESTATION OR MORE

2551
01:43:29,160 --> 01:43:32,240
FOR THE LATEST COMBINED

2552
01:43:32,240 --> 01:43:35,080
THREE-YEAR PERIOD 2018 TO 2020.

2553
01:43:35,080 --> 01:43:37,400
FOR THIS TIME PERIOD, THE U.S.

2554
01:43:37,400 --> 01:43:39,560
FETAL MORTALITY RATE FOR FETAL

2555
01:43:39,560 --> 01:43:43,800
DEATHS AT 24 WEEKS OR MORE WAS

2556
01:43:43,800 --> 01:43:45,080
3.67.

2557
01:43:45,080 --> 01:43:48,000
FETAL MORTALITY RATES WERE

2558
01:43:48,000 --> 01:43:50,640
HIGHEST ABOVE 5.

2559
01:43:50,640 --> 01:43:52,480
IN THE DISTRICT OF COLUMBIA,

2560
01:43:52,480 --> 01:43:54,080
ARKANSAS, ALABAMA AND MISS SAY

2561
01:43:54,080 --> 01:43:59,000
PEEMISSISSIPPI, AND LOWEST, BELW

2562
01:43:59,000 --> 01:44:02,920
THREE, IN NEW MEXICO,

2563
01:44:02,920 --> 01:44:04,040
CONNECTICUT, MASSACHUSETTS, AND

2564
01:44:04,040 --> 01:44:04,440
IOWA.

2565
01:44:04,440 --> 01:44:06,000
NOW I'LL TALK A LITTLE BIT ABOUT

2566
01:44:06,000 --> 01:44:08,320
CAUSE OF DEATH DATA.

2567
01:44:08,320 --> 01:44:10,000
DATA ARE ONLY INCLUDED FOR

2568
01:44:10,000 --> 01:44:11,960
STATES WHERE CAUSE OF DEATH WAS

2569
01:44:11,960 --> 01:44:15,240
BASED ON A 2003 FETAL DEATH

2570
01:44:15,240 --> 01:44:16,760
REPORT REVISION, AND LESS THAN

2571
01:44:16,760 --> 01:44:18,960
50% OF DEATHS WERE ATTRIBUTED TO

2572
01:44:18,960 --> 01:44:20,520
FETAL DEATH OF UNSPECIFIED

2573
01:44:20,520 --> 01:44:22,800
CAUSE.

2574
01:44:22,800 --> 01:44:23,720
THE FIVE MOST COMMON SELECTED

2575
01:44:23,720 --> 01:44:27,080
CAUSES OF FETAL DEATH ACCOUNTED

2576
01:44:27,080 --> 01:44:33,000
FOR 89.6% OF FETAL DEATHS IN

2577
01:44:33,000 --> 01:44:34,200
43 STATES AND DISTRICT OF

2578
01:44:34,200 --> 01:44:34,800
COLUMBIA REPORTED AREA.

2579
01:44:34,800 --> 01:44:36,960
BY ORDER OF FREQUENCY, THESE

2580
01:44:36,960 --> 01:44:39,280
WERE:  UNSPECIFIED CAUSE,

2581
01:44:39,280 --> 01:44:42,040
PLACENTAL CORD AND MEMBRANE

2582
01:44:42,040 --> 01:44:44,080
COMPLICATIONS, MATERNAL

2583
01:44:44,080 --> 01:44:45,400
COMPLICATIONS, MATERNAL

2584
01:44:45,400 --> 01:44:46,960
CONDITIONS UNRELATED TO

2585
01:44:46,960 --> 01:44:52,120
PREGNANCY, AND CONGENITAL

2586
01:44:52,120 --> 01:44:53,240
MALFORMATIONS.

2587
01:44:53,240 --> 01:44:55,120
THE FIVE MOST COMMON SELECTED

2588
01:44:55,120 --> 01:44:58,320
CAUSES OF FETAL DEATH AND THE

2589
01:44:58,320 --> 01:45:00,400
TOP TWO CAUSES WERE THE SAME FOR

2590
01:45:00,400 --> 01:45:01,800
NON-HISPANIC WHITE, NON-HISPANIC

2591
01:45:01,800 --> 01:45:03,920
BLACK, AND HISPANIC WOMEN, WHILE

2592
01:45:03,920 --> 01:45:05,440
THE RANKING OF THE OTHER CAUSES

2593
01:45:05,440 --> 01:45:09,600
DIFFERED.

2594
01:45:09,600 --> 01:45:10,840
UNSPECIFIED CAUSE, PLACENTAL

2595
01:45:10,840 --> 01:45:12,240
CORD AND MEMBRANE COMPLICATIONS

2596
01:45:12,240 --> 01:45:13,720
WERE THE TWO MOST COMMON OF THE

2597
01:45:13,720 --> 01:45:15,280
SELECTED CAUSES FOR ALL THREE

2598
01:45:15,280 --> 01:45:18,080
GROUPS.

2599
01:45:18,080 --> 01:45:20,080
CONGENITAL MALFORMATIONS WAS THE

2600
01:45:20,080 --> 01:45:23,520
THIRD MOTO MOST COMMON CAUSE FOR

2601
01:45:23,520 --> 01:45:24,960
FETAL DEATHS FOR HISPANIC WHITE

2602
01:45:24,960 --> 01:45:26,400
WOMEN FOLLOWED BY MATERNAL

2603
01:45:26,400 --> 01:45:27,720
COMPLICATIONS AND MATERNAL

2604
01:45:27,720 --> 01:45:28,360
CONDITIONS UNRELATED TO

2605
01:45:28,360 --> 01:45:30,120
PREGNANCY.

2606
01:45:30,120 --> 01:45:32,640
AMONG NON-HISPANIC BLACK WOMEN,

2607
01:45:32,640 --> 01:45:34,200
MATERNAL COMPLICATIONS WAS THE

2608
01:45:34,200 --> 01:45:36,720
THIRD MOST COMMON CAUSE OF FETAL

2609
01:45:36,720 --> 01:45:37,480
DEATH.

2610
01:45:37,480 --> 01:45:41,240
MOO TERNL CONDITIONS UNROW

2611
01:45:41,240 --> 01:45:42,880
RELATED TO PREGNANCY WAS FOURTH

2612
01:45:42,880 --> 01:45:44,880
AND CONGENITAL MALFORMATIONS WAS

2613
01:45:44,880 --> 01:45:45,280
FIFTH.

2614
01:45:45,280 --> 01:45:46,960
AMONG HISPANIC WOMEN, MATERNAL

2615
01:45:46,960 --> 01:45:48,600
COMPLICATIONS WAS THE THIRD MOST

2616
01:45:48,600 --> 01:45:52,120
COMMON CAUSE OF FETAL DEATH.

2617
01:45:52,120 --> 01:45:53,200
CONGENITAL MALFORMATIONS WAS

2618
01:45:53,200 --> 01:45:54,120
FOURTH.

2619
01:45:54,120 --> 01:45:55,760
AND MATERNAL CONDITIONS

2620
01:45:55,760 --> 01:45:56,680
UNRELATED TO PREGNANCY WAS

2621
01:45:56,680 --> 01:46:01,480
FIFTH.

2622
01:46:01,480 --> 01:46:03,920
NOW TO SUMMARIZE WHAT I'VE

2623
01:46:03,920 --> 01:46:08,000
COVERED.

2624
01:46:08,000 --> 01:46:10,840
IN TERMS OF FETAL DEATH DATA FOR

2625
01:46:10,840 --> 01:46:12,400
2020, THE TOTAL U.S. FETAL

2626
01:46:12,400 --> 01:46:16,440
MORTALITY RATE WAS 5.74 IN 2020,

2627
01:46:16,440 --> 01:46:20,040
ESSENTIALLY UNCHANGED FROM 2019.

2628
01:46:20,040 --> 01:46:22,400
FETAL MORTALITY RATE HAS

2629
01:46:22,400 --> 01:46:25,440
DECLINED 23% SINCE 1990.

2630
01:46:25,440 --> 01:46:29,520
THE EARLY FETAL MORTALITY RATE

2631
01:46:29,520 --> 01:46:31,920
WAS 2.97 IN 2020, AND HAS

2632
01:46:31,920 --> 01:46:36,400
DECLINED 6% SINCE 2014.

2633
01:46:36,400 --> 01:46:38,800
THE LATE -- THE LATE FETAL

2634
01:46:38,800 --> 01:46:41,680
MORTALITY RATE WAS 2.78 IN 2020,

2635
01:46:41,680 --> 01:46:45,280
AND HAS BEEN STABLE SINCE 2014.

2636
01:46:45,280 --> 01:46:47,360
FETAL MORTALITY RATES WERE

2637
01:46:47,360 --> 01:46:49,800
HIGHEST FOR:  NON-HISPANIC

2638
01:46:49,800 --> 01:46:52,080
NATIVE HAWAIIAN OR OTHER PACIFIC

2639
01:46:52,080 --> 01:46:54,280
ISLANDER AND NON-HISPANIC BLACK

2640
01:46:54,280 --> 01:46:57,320
WOMEN, FEMALES UNDER 15 AND AGED

2641
01:46:57,320 --> 01:46:59,960
45 AND OVER, WOMEN WHO SMOKED

2642
01:46:59,960 --> 01:47:03,480
DURING PREGNANCY, WOMEN WITH

2643
01:47:03,480 --> 01:47:05,480
MULTIPLE GESTATION PREGNANCIES,

2644
01:47:05,480 --> 01:47:07,360
MALE FETUSES, AND AT THE

2645
01:47:07,360 --> 01:47:09,400
EARLIEST GESTATIONAL AGES AND

2646
01:47:09,400 --> 01:47:11,360
LOWEST BIRTH WEIGHTS.

2647
01:47:11,360 --> 01:47:14,920
FIVE SELECTED CAUSES OF DEATH

2648
01:47:14,920 --> 01:47:17,200
ACCOUNTED FOR 89.6% OF FETAL

2649
01:47:17,200 --> 01:47:18,760
DEATHS WITH THE ORDER VARYING

2650
01:47:18,760 --> 01:47:20,200
SOMEWHAT BY RACE AND HISPANIC

2651
01:47:20,200 --> 01:47:26,440
ORIGIN.

2652
01:47:26,440 --> 01:47:27,200
OVERALL, FETAL DEATHS ARE PART

2653
01:47:27,200 --> 01:47:28,200
OF THE PREGNANCY CONTINUUM.

2654
01:47:28,200 --> 01:47:30,120
THERE ARE MORE FETAL DEATHS AT

2655
01:47:30,120 --> 01:47:32,960
20 WEEKS OF GESTATION OR MORE

2656
01:47:32,960 --> 01:47:34,560
THAN INFANT DEATHS IN THE U.S.,

2657
01:47:34,560 --> 01:47:36,520
BUT FETAL DEATHS ARE TOO OFTEN

2658
01:47:36,520 --> 01:47:38,960
OVERLOOKED.

2659
01:47:38,960 --> 01:47:40,520
VITAL STATISTICS DATA ARE THE

2660
01:47:40,520 --> 01:47:42,040
MOST COMPREHENSIVE SOURCE OF

2661
01:47:42,040 --> 01:47:44,240
U.S. DATA ON FETAL DEATHS OF 20

2662
01:47:44,240 --> 01:47:48,080
WEEKS OF GESTATION OR MORE, AND

2663
01:47:48,080 --> 01:47:49,080
PROVIDES THE OPPORTUNITY TO

2664
01:47:49,080 --> 01:47:51,400
CONDUCT DETAILED ANALYSES OF

2665
01:47:51,400 --> 01:47:53,600
FETAL DEATHS BY A VARIETY OF

2666
01:47:53,600 --> 01:47:56,880
ITEMS INCLUDING CAUSE OF DEATH.

2667
01:47:56,880 --> 01:48:00,040
DATA FILES AND A STANDARD REPORT

2668
01:48:00,040 --> 01:48:01,520
ARE RELEASED ANNUALLY, AS WELL

2669
01:48:01,520 --> 01:48:03,480
AS A NUMBER OF ADDITIONAL

2670
01:48:03,480 --> 01:48:06,240
STANDARD REPORTS SUCH AS A

2671
01:48:06,240 --> 01:48:08,000
TRI-ANNUAL REPORT ON FETAL CAUSE

2672
01:48:08,000 --> 01:48:08,520
OF DEATH.

2673
01:48:08,520 --> 01:48:09,920
WHILE THERE ARE SOME CHALLENGES

2674
01:48:09,920 --> 01:48:12,160
IN COLLECTING FETAL DEATH DATA,

2675
01:48:12,160 --> 01:48:14,160
A NUMBER OF DATA QUALITY

2676
01:48:14,160 --> 01:48:15,720
IMPROVEMENT EFFORTS HAVE BEEN

2677
01:48:15,720 --> 01:48:19,640
IMPLEMENTED I AND NEW RESOURCE,

2678
01:48:19,640 --> 01:48:21,360
SUCH AS E-LEARNING TRAINING, ARE

2679
01:48:21,360 --> 01:48:21,640
AVAILABLE.

2680
01:48:21,640 --> 01:48:25,160
EFFORTS TO IMPROVE DATA

2681
01:48:25,160 --> 01:48:26,920
QUALITY -- DATA TIMELINESS AND

2682
01:48:26,920 --> 01:48:27,840
QUALITY CONTINUE.

2683
01:48:27,840 --> 01:48:33,520
THANK YOU.

2684
01:48:33,520 --> 01:48:35,360
>>THANK YOU, DR. GREGORY,
FOR

2685
01:48:35,360 --> 01:48:37,240
YOUR WONDERFUL PRESENTATION.

2686
01:48:37,240 --> 01:48:39,440
AND I BELIEVE IN THE CHAT, THERE

2687
01:48:39,440 --> 01:48:43,720
WERE ALREADY SOME OF THE ISSUES

2688
01:48:43,720 --> 01:48:46,680
THAT YOU BROUGHT UP, WHICH WERE

2689
01:48:46,680 --> 01:48:47,920
THE LIMITATION ON THE DATA THAT

2690
01:48:47,920 --> 01:48:52,480
WE ARE ABLE TO ABSTRACT.

2691
01:48:52,480 --> 01:48:55,880
AND THESE ARE SOME OF THE

2692
01:48:55,880 --> 01:48:58,400
MANDATE THAT WE ARE TRYING TO

2693
01:48:58,400 --> 01:49:00,280
COVER, CAN WE IMPROVE THE DATA

2694
01:49:00,280 --> 01:49:06,640
COLLECTION, CAN WE IMPROVE

2695
01:49:06,640 --> 01:49:07,960
MANDATE WHERE WE ADDRESS THE

2696
01:49:07,960 --> 01:49:09,720
COMMUNITY THAT ARE AT HIGH RISK

2697
01:49:09,720 --> 01:49:12,440
OF STILLBIRTH.

2698
01:49:12,440 --> 01:49:14,960
AND HOW CAN WE ALSO ADDRESS THE

2699
01:49:14,960 --> 01:49:16,160
BURDEN ON THE FAMILY AND THE

2700
01:49:16,160 --> 01:49:18,320
EMOTIONAL SUPPORT THAT THEY NEED

2701
01:49:18,320 --> 01:49:21,680
TO UNDERSTAND WHAT'S HAPPENING,

2702
01:49:21,680 --> 01:49:22,880
AND THE RISK FACTOR.

2703
01:49:22,880 --> 01:49:23,880
AND THESE ARE ALL THE THINGS

2704
01:49:23,880 --> 01:49:26,760
THAT WE HAVE ALSO BEEN MANDATED

2705
01:49:26,760 --> 01:49:31,160
TO ADDRESS, HOW CAN WE FIGURE IT

2706
01:49:31,160 --> 01:49:32,680
OUT, HOW WE CAN MOVE FORWARD.

2707
01:49:32,680 --> 01:49:39,040
SO NOW WE ARE OPEN AGAIN FOR THE

2708
01:49:39,040 --> 01:49:42,440
DISCUSSION.

2709
01:49:42,440 --> 01:49:43,960
I'D INVITE EVERYONE TO PLEASE

2710
01:49:43,960 --> 01:49:45,200
RAISE YOUR HAND OR PUT IT IN THE

2711
01:49:45,200 --> 01:49:55,320
CHAT.

2712
01:49:57,080 --> 01:49:58,960
>>THANKS, DR. GREGORY,
FOR A

2713
01:49:58,960 --> 01:49:59,600
GREAT PRESENTATION.

2714
01:49:59,600 --> 01:50:01,640
I THINK IT'S ALSO IMPORTANT TO

2715
01:50:01,640 --> 01:50:03,200
NOTE THAT SOME OF THE CHANGES

2716
01:50:03,200 --> 01:50:05,160
THAT NEEDED TO BE MADE IN TERMS

2717
01:50:05,160 --> 01:50:08,080
OF VARIABLES HAS REALLY HELPED

2718
01:50:08,080 --> 01:50:09,560
TO SPEED UP THE REPORTING, SO

2719
01:50:09,560 --> 01:50:11,960
THAT'S VERY -- THAT'S A VERY

2720
01:50:11,960 --> 01:50:22,240
IMPORTANT ISSUE.

2721
01:50:28,440 --> 01:50:30,040
SO IT SEEMS SOME OF THE

2722
01:50:30,040 --> 01:50:34,560
QUESTIONS, DR. GREGORY, IS AGAIN

2723
01:50:34,560 --> 01:50:35,880
WHAT -- I KNOW YOU ADDRESSED

2724
01:50:35,880 --> 01:50:37,400
SOME OF THESE ISSUES IN YOUR

2725
01:50:37,400 --> 01:50:38,520
PRESENTATION, BUT WHAT ELSE CAN

2726
01:50:38,520 --> 01:50:41,360
WE DO TO IMPROVE THE DATA

2727
01:50:41,360 --> 01:50:43,000
COLLECTION AND ABSTRACTION, AS

2728
01:50:43,000 --> 01:50:44,880
YOU WERE TALKING ABOUT, AND TO

2729
01:50:44,880 --> 01:50:46,040
OBTAIN MORE INFORMATION ABOUT

2730
01:50:46,040 --> 01:50:47,720
THE CAUSE OF DEATH.

2731
01:50:47,720 --> 01:50:50,360
OR MORE AVAILABLE INFORMATION.

2732
01:50:50,360 --> 01:50:51,480
>>WE'RE CERTAINLY ALWAYS

2733
01:50:51,480 --> 01:50:54,880
LOOKING FOR WAYS TO HELP IMPROVE

2734
01:50:54,880 --> 01:50:56,720
DATA QUALITY ANYWHERE WE CAN.

2735
01:50:56,720 --> 01:51:00,080
WE'VE IMPLEMENTED THE E-LEARNING

2736
01:51:00,080 --> 01:51:04,560
TRAINING AND WE'RE TRYING TO

2737
01:51:04,560 --> 01:51:07,520
FIND WAYS TO IMPROVE THAT TO

2738
01:51:07,520 --> 01:51:08,720
HELP SPECIFICALLY WITH CAUSE OF

2739
01:51:08,720 --> 01:51:12,480
DEATH AND GETTING THE MOST

2740
01:51:12,480 --> 01:51:13,320
DETAILED, MOST ACCURATE

2741
01:51:13,320 --> 01:51:15,240
INFORMATION WE COULD POSSIBLY

2742
01:51:15,240 --> 01:51:20,080
GET, HELPING MEDICAL EXAMINERS

2743
01:51:20,080 --> 01:51:21,840
PROVIDE US WITH THAT

2744
01:51:21,840 --> 01:51:22,480
INFORMATION.

2745
01:51:22,480 --> 01:51:23,880
CERTAINLY THINGS OF THAT NATURE,

2746
01:51:23,880 --> 01:51:29,600
AND AS DR. BARFIELD MENTIONED,

2747
01:51:29,600 --> 01:51:31,040
DROPPING ITEMS THAT WERE POORLY

2748
01:51:31,040 --> 01:51:32,040
REPORTED OR DIDN'T SEEM LIKE

2749
01:51:32,040 --> 01:51:34,200
THEY COULD BE IMPROVED IN ORDER

2750
01:51:34,200 --> 01:51:35,560
TO HELP IMPROVE THE QUALITY OF

2751
01:51:35,560 --> 01:51:38,200
THE REMAINING ITEMS, ESPECIALLY

2752
01:51:38,200 --> 01:51:48,480
CAUSE OF DEATH.

2753
01:51:54,720 --> 01:51:57,280
>>ANY OTHER QUESTIONS
FROM THE

2754
01:51:57,280 --> 01:51:58,920
PANEL, THE WORKING GROUP

2755
01:51:58,920 --> 01:51:59,840
MEMBERS?

2756
01:51:59,840 --> 01:52:04,880
OR ANY COMMENTS?

2757
01:52:04,880 --> 01:52:06,600
>>I HAD A QUESTION, ARE
THERE

2758
01:52:06,600 --> 01:52:08,480
EFFORTS AT THE WORK WITH THE

2759
01:52:08,480 --> 01:52:09,560
PERINATAL QUALITY COLLABORATIVES

2760
01:52:09,560 --> 01:52:13,160
WHICH I BELIEVE ARE IN ALL 50

2761
01:52:13,160 --> 01:52:15,320
STATES ON DATA COLLECTION AND

2762
01:52:15,320 --> 01:52:15,600
IMPROVEMENT?

2763
01:52:15,600 --> 01:52:16,760
>>YES, THAT'S SOMETHING
WE ARE

2764
01:52:16,760 --> 01:52:18,200
ALSO WORKING ON AS WELL.

2765
01:52:18,200 --> 01:52:20,040
SO THAT'S SOMETHING WE'RE TRYING

2766
01:52:20,040 --> 01:52:23,160
TO DO AS WELL.

2767
01:52:23,160 --> 01:52:25,760
>>I SEE DR. SILVER HAS
RAISED

2768
01:52:25,760 --> 01:52:28,840
HIS HAND.

2769
01:52:28,840 --> 01:52:30,320
>>ANA WAS FIRST.

2770
01:52:30,320 --> 01:52:34,320
>>I KNOW, I'M SO SORRY.

2771
01:52:34,320 --> 01:52:36,320
ANA, YOU WANT TO GO FIRST?

2772
01:52:36,320 --> 01:52:38,840
>>YES, I CAN'T SEEM TO
TURN MY

2773
01:52:38,840 --> 01:52:41,160
VIDEO ON.

2774
01:52:41,160 --> 01:52:45,960
I'M HERE REPRESENTING ELSA BRIEF

2775
01:52:45,960 --> 01:52:46,360
FAMILIES.

2776
01:52:46,360 --> 01:52:53,640
MY NAME IS ANA VICK.

2777
01:52:53,640 --> 01:52:55,840
JUST AS A PERSONAL EXPERIENCE TO

2778
01:52:55,840 --> 01:52:57,040
INTERJECT HERE, I DID PUT IN THE

2779
01:52:57,040 --> 01:53:00,160
CHAT AS WELL, WE DIDN'T GET A

2780
01:53:00,160 --> 01:53:03,880
CAUSE OF DEATH FOR OUR SON AND I

2781
01:53:03,880 --> 01:53:04,840
WAS VERY DISCOURAGED IN MANY

2782
01:53:04,840 --> 01:53:06,520
WAYS THAT I DIDN'T WANT TO GET

2783
01:53:06,520 --> 01:53:08,840
INTO BUT WE DID FIND OUT THROUGH

2784
01:53:08,840 --> 01:53:12,040
SIX YEARS LATER THAT IT WAS CORD

2785
01:53:12,040 --> 01:53:12,360
COMPRESSIONS.

2786
01:53:12,360 --> 01:53:13,520
SO FOR ME, IT FEELS LIKE THERE

2787
01:53:13,520 --> 01:53:15,160
ARE MANY CASES LIKE THIS, AND I

2788
01:53:15,160 --> 01:53:16,720
KNOW FOR A FACT, BECAUSE I SPEAK

2789
01:53:16,720 --> 01:53:18,680
TO PARENTS EVERY DAY.

2790
01:53:18,680 --> 01:53:20,760
SO HOW DO WE UPDATE DATA?

2791
01:53:20,760 --> 01:53:22,200
IS THERE ACTUALLY A WAY TO DO

2792
01:53:22,200 --> 01:53:22,400
THAT?

2793
01:53:22,400 --> 01:53:23,800
I WOULD LOVE FOR MY SON'S DEATH

2794
01:53:23,800 --> 01:53:25,760
TO BE PROPERLY RECORDED AND PART

2795
01:53:25,760 --> 01:53:29,160
OF RESEARCH, BUT NOBODY IS

2796
01:53:29,160 --> 01:53:30,240
ASKING ME FOR ANYTHING AT THIS

2797
01:53:30,240 --> 01:53:30,720
POINT.

2798
01:53:30,720 --> 01:53:32,120
AND I THINK IT WOULD BE VERY

2799
01:53:32,120 --> 01:53:33,240
HELPFUL, BECAUSE MANY OF US WHO

2800
01:53:33,240 --> 01:53:35,120
ARE FINDING A CAUSE, YOU KNOW,

2801
01:53:35,120 --> 01:53:36,680
WANT TO SEE CHANGE, WE WANT TO

2802
01:53:36,680 --> 01:53:39,160
SEE FAMILIES HAVE THEIR BABIES

2803
01:53:39,160 --> 01:53:39,880
HOME SAFELY.

2804
01:53:39,880 --> 01:53:41,640
SO I THINK THIS IS A GREAT

2805
01:53:41,640 --> 01:53:43,360
GROUP, AND I JUST WANT TO HEAR

2806
01:53:43,360 --> 01:53:46,040
WHAT YOUR GUYS' TAKE IS WHAT WE

2807
01:53:46,040 --> 01:53:47,520
CAN DO ON OUR END AS PARENTS,

2808
01:53:47,520 --> 01:53:49,200
BECAUSE YOU KNOW, WE DO WANT TO

2809
01:53:49,200 --> 01:53:50,560
SEE SOMETHING COME FROM THE LOSS

2810
01:53:50,560 --> 01:53:54,880
THAT WE EXPERIENCED.

2811
01:53:54,880 --> 01:53:58,240
>>ANA, I CAN SPEAK ON
BEHALF OF

2812
01:53:58,240 --> 01:53:59,560
THE PANEL THAT HAS BEEN

2813
01:53:59,560 --> 01:54:00,680
ASSEMBLED.

2814
01:54:00,680 --> 01:54:05,880
THAT THE FIRST AND FOREMOST

2815
01:54:05,880 --> 01:54:07,160
CHARGE OF THIS GROUP IS TO

2816
01:54:07,160 --> 01:54:09,880
ADDRESS CURRENT BARRIERS TO

2817
01:54:09,880 --> 01:54:11,280
COLLECTING DATA ON STILLBIRTHS

2818
01:54:11,280 --> 01:54:12,880
IN THE U.S., STILLBIRTHS AND

2819
01:54:12,880 --> 01:54:13,280
FETAL DEATHS.

2820
01:54:13,280 --> 01:54:15,280
SO I DO FEEL WE HAVE AN

2821
01:54:15,280 --> 01:54:17,920
OBLIGATION TO ALL OF YOU WHO'VE

2822
01:54:17,920 --> 01:54:26,800
LOST BABIES TO RECTIFY THE

2823
01:54:26,800 --> 01:54:28,560
PROBLEMS WITH DATA COLLECTION.

2824
01:54:28,560 --> 01:54:32,200
AND I DO THINK THAT IN THE

2825
01:54:32,200 --> 01:54:33,280
UPCOMING MEETINGS IN NOVEMBER

2826
01:54:33,280 --> 01:54:36,880
AND DECEMBER, YOU'LL SEE A

2827
01:54:36,880 --> 01:54:39,840
GLIMPSE OF WHAT EXPERTS MIGHT BE

2828
01:54:39,840 --> 01:54:44,160
WILLING TO PROPOSE TO MAKE SURE

2829
01:54:44,160 --> 01:54:45,360
THAT THE DATA BEING COLLECTED

2830
01:54:45,360 --> 01:54:48,640
ACROSS THE COUNTRY IS

2831
01:54:48,640 --> 01:54:51,160
MEANINGFUL, LEADS TO PUBLIC

2832
01:54:51,160 --> 01:54:52,400
HEALTH CHANGES THAT ARE NEEDED

2833
01:54:52,400 --> 01:54:54,360
IN THIS AREA.

2834
01:54:54,360 --> 01:54:58,160
DR. SILL VE YOU HAVE YOUR HAND D

2835
01:54:58,160 --> 01:54:58,320
UP.

2836
01:54:58,320 --> 01:54:59,120
>>YOU BET.

2837
01:54:59,120 --> 01:55:00,680
SO THANKS FOR A GREAT

2838
01:55:00,680 --> 01:55:01,640
PRESENTATION, AND I THINK THAT

2839
01:55:01,640 --> 01:55:04,000
WAS REALLY, REALLY HELPFUL.

2840
01:55:04,000 --> 01:55:07,480
AND I HAVE A TWO-PART

2841
01:55:07,480 --> 01:55:09,040
QUESTION/COMMENT FOR THE GROUP.

2842
01:55:09,040 --> 01:55:12,640
ONE IS, THERE'S NO QUESTION THAT

2843
01:55:12,640 --> 01:55:15,280
WE NEED BETTER MECHANISMS TO GET

2844
01:55:15,280 --> 01:55:18,680
NEW AND UPDATED DATA INTO THE

2845
01:55:18,680 --> 01:55:20,720
FETAL DEATH CERTIFICATES AND

2846
01:55:20,720 --> 01:55:23,320
INTO THE VITAL RECORDS.

2847
01:55:23,320 --> 01:55:24,440
WE'VE DONE A LOT OF WORK WITH

2848
01:55:24,440 --> 01:55:25,520
OUR STATE HEALTH DEPARTMENT HERE

2849
01:55:25,520 --> 01:55:29,080
IN THA UTAH, AND I HAVE NO DOUBT

2850
01:55:29,080 --> 01:55:29,640
THAT ALL STATE HEALTH

2851
01:55:29,640 --> 01:55:31,080
DEPARTMENTS ARE VERY

2852
01:55:31,080 --> 01:55:32,520
ENTHUSIASTIC AND KEEN TO DO

2853
01:55:32,520 --> 01:55:34,160
THIS, BUT EVERYBODY IS LIMITED

2854
01:55:34,160 --> 01:55:38,080
BY RESOURCES.

2855
01:55:38,080 --> 01:55:40,040
AND THERE ARE MANY WAYS TO LINK

2856
01:55:40,040 --> 01:55:40,800
ELECTRONIC MEDICAL RECORDS AND

2857
01:55:40,800 --> 01:55:45,240
TO PUT NEW DATA IN, BUT IT'S

2858
01:55:45,240 --> 01:55:46,440
REALLY GOING TO REQUIRE

2859
01:55:46,440 --> 01:55:48,120
RESOURCES AND SO THAT THE

2860
01:55:48,120 --> 01:55:51,320
PARENTS ON THE CALL, CONTINUING

2861
01:55:51,320 --> 01:55:52,520
TO ADVOCATE AND CONTINUE TO

2862
01:55:52,520 --> 01:55:53,840
LOBBY TO GET THE RESOURCES TO

2863
01:55:53,840 --> 01:55:55,480
THE STATE HEALTH DEPARTMENTS SO

2864
01:55:55,480 --> 01:55:58,480
THAT WE HAVE THE ABILITY TO USE

2865
01:55:58,480 --> 01:56:00,000
MODERN TECHNOLOGY TO COLLECT

2866
01:56:00,000 --> 01:56:02,560
BETTER DATA AND TO UPDATE THE

2867
01:56:02,560 --> 01:56:03,560
FETAL DEATH CERTIFICATES WHEN

2868
01:56:03,560 --> 01:56:06,800
NEW DATA COMES IN AS PART OF THE

2869
01:56:06,800 --> 01:56:09,800
STILLBIRTH EVALUATION WOULD BE

2870
01:56:09,800 --> 01:56:10,720
TERRIFIC.

2871
01:56:10,720 --> 01:56:11,720
A SECOND THING, AND THIS MAY BE

2872
01:56:11,720 --> 01:56:13,360
SOMETHING YOU PLAN TO ADDRESS

2873
01:56:13,360 --> 01:56:17,240
LATER ON TODAY, SO IF YOU DO,

2874
01:56:17,240 --> 01:56:18,440
LET'S JUST DEFER IT BUT IF NOT,

2875
01:56:18,440 --> 01:56:20,160
IT MIGHT FIT HERE.

2876
01:56:20,160 --> 01:56:24,680
MANY OTHER COUNTRIES HAVE DONE

2877
01:56:24,680 --> 01:56:26,280
AUDITS, THE SAME WAY WE

2878
01:56:26,280 --> 01:56:28,320
CURRENTLY DO AUDITS FOR MATERNAL

2879
01:56:28,320 --> 01:56:28,760
DEATHS.

2880
01:56:28,760 --> 01:56:30,520
AND THOSE MATERNAL DEATH AUDITS

2881
01:56:30,520 --> 01:56:31,680
ARE TYPICALLY DONE THROUGH STATE

2882
01:56:31,680 --> 01:56:34,600
HEALTH DEPARTMENTS IN

2883
01:56:34,600 --> 01:56:37,880
COLLABORATION WITH VOLUNTEERS,

2884
01:56:37,880 --> 01:56:41,200
YOU KNOW, AS PHYSICIANS AND

2885
01:56:41,200 --> 01:56:42,880
INVOLVING THE FAMILIES.

2886
01:56:42,880 --> 01:56:47,920
THAT APPROACH HAS SEEMED TO BE

2887
01:56:47,920 --> 01:56:49,240
VERY BENEFICIAL AND SUCCESSFUL

2888
01:56:49,240 --> 01:56:50,800
IN OTHER COUNTRIES, BUT THE

2889
01:56:50,800 --> 01:56:52,560
BURDEN OF STILLBIRTHS WOULD BE

2890
01:56:52,560 --> 01:56:54,280
MUCH GREATER NUMERICALLY THAN

2891
01:56:54,280 --> 01:56:56,520
MATERNAL DEATHS, AND SO WE MAY

2892
01:56:56,520 --> 01:56:58,720
NOT BE ABLE TO COUNT ON

2893
01:56:58,720 --> 01:57:00,040
VOLUNTEERISM TO DO THAT, SO I'D

2894
01:57:00,040 --> 01:57:02,440
LOVE TO SEE THAT GET EITHER

2895
01:57:02,440 --> 01:57:04,560
ADDRESSED LATER OR AT LEAST

2896
01:57:04,560 --> 01:57:06,000
ADDED ON TO THIS CONCEPT OF

2897
01:57:06,000 --> 01:57:09,800
COLLECTING BETTER DATA.

2898
01:57:09,800 --> 01:57:11,880
>>TO BOB, WE'VE PUT ASIDE
SOME

2899
01:57:11,880 --> 01:57:16,600
TIME AT THE END OF THE SESSION

2900
01:57:16,600 --> 01:57:17,880
TODAY FOR THE WORKING GROUP TO

2901
01:57:17,880 --> 01:57:19,040
START BRAINSTORMING AROUND WHAT

2902
01:57:19,040 --> 01:57:24,840
WE CAN DO TO REMOVE THE CURRENT

2903
01:57:24,840 --> 01:57:26,040
BARRIERS AROUND PROPER DATA

2904
01:57:26,040 --> 01:57:26,680
COLLECTION.

2905
01:57:26,680 --> 01:57:30,960
SO LET'S TALK MORE ABOUT

2906
01:57:30,960 --> 01:57:32,080
APPROACHES.

2907
01:57:32,080 --> 01:57:33,080
DR. DUDLEY?

2908
01:57:33,080 --> 01:57:38,000
AND THEN DR. RASMUSSEN.

2909
01:57:38,000 --> 01:57:41,160
>>MY QUESTION IS FOR
ELIZABETH.

2910
01:57:41,160 --> 01:57:45,280
SO WHO COMPLETES THESE FORMS AT

2911
01:57:45,280 --> 01:57:51,080
THE INDIVIDUAL HOSPITALS?

2912
01:57:51,080 --> 01:57:54,360
>>IT CAN VARY BASED ON

2913
01:57:54,360 --> 01:57:54,720
HOSPITAL.

2914
01:57:54,720 --> 01:57:56,080
COULD BE A PHYSICIAN, IT COULD

2915
01:57:56,080 --> 01:58:02,040
BE THE NURSE, THE BIRTH

2916
01:58:02,040 --> 01:58:04,760
REGISTRATION SPECIALISTS WOULD

2917
01:58:04,760 --> 01:58:06,080
ALSO POSSIBLY FILL OUT SOME OF

2918
01:58:06,080 --> 01:58:09,040
THIS INFORMATION AS WELL.

2919
01:58:09,040 --> 01:58:10,160
IT JUST DEPENDS ON HOW THE

2920
01:58:10,160 --> 01:58:11,000
HOSPITAL IS SET UP.

2921
01:58:11,000 --> 01:58:11,720
>>OKAY.

2922
01:58:11,720 --> 01:58:13,120
AND DO THEY GET COMPENSATED IN

2923
01:58:13,120 --> 01:58:17,920
ANY WAY FOR DOING THIS?

2924
01:58:17,920 --> 01:58:18,760
DO YOU KNOW?

2925
01:58:18,760 --> 01:58:19,960
OR IS THAT AN INDIVIDUAL

2926
01:58:19,960 --> 01:58:20,360
HOSPITAL DECISION?

2927
01:58:20,360 --> 01:58:21,600
>>I AM NOT SURE ABOUT
THAT.

2928
01:58:21,600 --> 01:58:26,160
>>OKAY.

2929
01:58:26,160 --> 01:58:27,360
AND DO ALL OF THEM GO THROUGH

2930
01:58:27,360 --> 01:58:32,000
THE ONLANE TRAININ ONLINE TRAINU

2931
01:58:32,000 --> 01:58:32,200
HAVE?

2932
01:58:32,200 --> 01:58:33,560
>>I THINK IT DEPENDS ON
THE

2933
01:58:33,560 --> 01:58:34,120
HOSPITAL.

2934
01:58:34,120 --> 01:58:36,080
SOME HOSPITALS MAY HAVE THEIR --

2935
01:58:36,080 --> 01:58:39,240
WHOEVER FILLS OUT THESE FORMS

2936
01:58:39,240 --> 01:58:40,800
TAKE THIS TRAINING, BUT IT'S NOT

2937
01:58:40,800 --> 01:58:41,320
MANDATORY.

2938
01:58:41,320 --> 01:58:42,280
IT DEPENDS ON THE HOSPITAL.

2939
01:58:42,280 --> 01:58:42,960
>>OKAY.

2940
01:58:42,960 --> 01:58:44,680
ALL RIGHT.

2941
01:58:44,680 --> 01:58:44,920
THANKS.

2942
01:58:44,920 --> 01:58:45,280
APPRECIATE THAT.

2943
01:58:45,280 --> 01:58:45,800
>>MM-HMM.

2944
01:58:45,800 --> 01:58:53,000
>>AND MAYBE AN EXTENSION
TO DR,

2945
01:58:53,000 --> 01:58:54,360
ELIZABETH, HOW IS THE QUALITY OF

2946
01:58:54,360 --> 01:59:03,480
DATA IN THESE FORMS EVALUATED?

2947
01:59:03,480 --> 01:59:08,240
>>SO WHEN WE -- SO WE
HAVE

2948
01:59:08,240 --> 01:59:09,200
ANOTHER BRANCH THAT RECEIVES THE

2949
01:59:09,200 --> 01:59:11,920
DATA BEFORE WE DO.

2950
01:59:11,920 --> 01:59:14,080
AND THEY DO A LOT OF QUALITY

2951
01:59:14,080 --> 01:59:15,400
CONTROL, YOU KNOW, FOR EXAMPLE,

2952
01:59:15,400 --> 01:59:18,680
IF THEY SAW SOMETHING THAT WAS

2953
01:59:18,680 --> 01:59:20,920
VERY OUT OF RANGE, PERHAPS

2954
01:59:20,920 --> 01:59:21,960
MOTHER'S HEIGHT OR MOTHER'S

2955
01:59:21,960 --> 01:59:23,320
WEIGHT OR SOMETHING LIKE THAT,

2956
01:59:23,320 --> 01:59:26,480
THEY WOULD THEN GO BACK AND

2957
01:59:26,480 --> 01:59:29,000
QUERY THE STATE TO DOUBLE-CHECK

2958
01:59:29,000 --> 01:59:30,120
THIS AND MAKE SURE THAT WHAT

2959
01:59:30,120 --> 01:59:31,600
THEY RECORDED WAS ACCURATE.

2960
01:59:31,600 --> 01:59:32,920
THEY DO A LOT OF QUALITY CONTROL

2961
01:59:32,920 --> 01:59:34,800
IN THAT WAY.

2962
01:59:34,800 --> 01:59:37,640
AND THEN WHEN WE RECEIVE THE

2963
01:59:37,640 --> 01:59:39,520
DATA, THE REPRODUCTIVE

2964
01:59:39,520 --> 01:59:40,720
STATISTICS BRANCH, WE THEN ALSO

2965
01:59:40,720 --> 01:59:44,760
GO AND DO SOME QUALITY CONTROL

2966
01:59:44,760 --> 01:59:45,520
AS WELL.

2967
01:59:45,520 --> 01:59:47,040
WE DO A LOT OF LOOKING AT THE

2968
01:59:47,040 --> 01:59:50,320
DATA TO SEE, YOU KNOW, WHAT

2969
01:59:50,320 --> 01:59:54,760
ITEMS AND FOR WHAT STATES, MAYBE

2970
01:59:54,760 --> 01:59:56,800
ABOVE 50% UNKNOWNS, LOOKING AT

2971
01:59:56,800 --> 01:59:59,640
DISTRIBUTIONS.

2972
01:59:59,640 --> 02:00:02,920
SO WE DO TRY TO TAKE A LOOK AT

2973
02:00:02,920 --> 02:00:04,400
AS MUCH AS WE CAN IN TERMS OF

2974
02:00:04,400 --> 02:00:05,000
QUALITY CONTROL.

2975
02:00:05,000 --> 02:00:05,600
>>GOT IT.

2976
02:00:05,600 --> 02:00:05,800
OKAY.

2977
02:00:05,800 --> 02:00:10,920
THANK YOU, DR. GREGORY.

2978
02:00:10,920 --> 02:00:11,760
DR. SONJA RASMUSSEN.

2979
02:00:11,760 --> 02:00:13,840
>>YEAH, I DON'T THINK
I'LL BE

2980
02:00:13,840 --> 02:00:15,920
ABLE TO PUT MY VIDEO ON, BUT IT

2981
02:00:15,920 --> 02:00:17,760
SEEMS LIKE MAYBE JUST BASED ON

2982
02:00:17,760 --> 02:00:19,600
SOME OF THE PARENTS' QUESTIONS,

2983
02:00:19,600 --> 02:00:24,960
THAT SOME OF THE ISSUES IS THAT

2984
02:00:24,960 --> 02:00:26,880
WE -- IT SEEMS LIKE SOME OF THE

2985
02:00:26,880 --> 02:00:30,360
ISSUES MAY BE THAT THE CAUSE

2986
02:00:30,360 --> 02:00:31,920
ISN'T KNOWN BECAUSE THE

2987
02:00:31,920 --> 02:00:32,920
EVALUATION TO FIGURE OUT THE

2988
02:00:32,920 --> 02:00:34,360
CAUSE WASN'T DONE.

2989
02:00:34,360 --> 02:00:35,800
ARE THERE STUDIES THAT LOOK AT

2990
02:00:35,800 --> 02:00:37,440
HOW OFTEN THE EVALUATION THAT'S

2991
02:00:37,440 --> 02:00:40,920
BEEN RECOMMENDED BY ACOG IS

2992
02:00:40,920 --> 02:00:41,520
DONE?

2993
02:00:41,520 --> 02:00:43,640
AND IS THERE A WAY TO ENCOURAGE

2994
02:00:43,640 --> 02:00:45,480
PAYORS TO PAY FOR AUTOPSIES AND

2995
02:00:45,480 --> 02:00:46,800
OTHER STUDIES TO UNDERSTAND THE

2996
02:00:46,800 --> 02:00:47,400
CAUSE?

2997
02:00:47,400 --> 02:00:52,000
I KNOW AS GENETICIST, OFTENTIMES

2998
02:00:52,000 --> 02:00:54,280
THE STUDIES CAN'T BE DONE

2999
02:00:54,280 --> 02:00:55,160
WITHOUT PARENTS HAVING TO PAY

3000
02:00:55,160 --> 02:00:56,440
FOR IT OUT OF POCKET, WHICH SOME

3001
02:00:56,440 --> 02:01:00,800
OF OUR GENETICS -- ARE VERY

3002
02:01:00,800 --> 02:01:01,880
EXPENSIVE.

3003
02:01:01,880 --> 02:01:03,480
SO TRYING TO FIND A WAY TO GET

3004
02:01:03,480 --> 02:01:06,320
PAYORS TO PAY FOR THAT WOULD

3005
02:01:06,320 --> 02:01:11,480
REALLY HELP TO UNDERSTAND WHAT

3006
02:01:11,480 --> 02:01:15,440
CAUSES ARE.

3007
02:01:15,440 --> 02:01:19,840
>>DR. REDDY?

3008
02:01:19,840 --> 02:01:23,480
>>IN TERMS OF DR.
RASMUSSEN'S

3009
02:01:23,480 --> 02:01:27,240
QUESTIONS, YOU KNOW, YEAH, IT

3010
02:01:27,240 --> 02:01:28,920
DOES VARY, EVEN JUST ORDERING OF

3011
02:01:28,920 --> 02:01:32,720
TESTS, AND AS YOU SAID,

3012
02:01:32,720 --> 02:01:34,520
INSURANCE COVERAGE DISSUADES

3013
02:01:34,520 --> 02:01:36,600
MANY PARENTS FROM HAVING AN

3014
02:01:36,600 --> 02:01:38,160
AUTOPSY, MICRO ARRAY TESTING

3015
02:01:38,160 --> 02:01:42,520
THAT COULD HELP FIND A CAUSE.

3016
02:01:42,520 --> 02:01:45,840
I WANTED TO ASK DR. GREGORY AND

3017
02:01:45,840 --> 02:01:51,000
THE CDC FOLKS ON THE CALL ABOUT

3018
02:01:51,000 --> 02:01:51,760
STILLBIRTH REGISTRY.

3019
02:01:51,760 --> 02:01:54,440
SO THE CDC HAS WONDERFUL BIRTH

3020
02:01:54,440 --> 02:01:56,800
DEFECTS REGISTRY FOR

3021
02:01:56,800 --> 02:01:57,960
METROPOLITAN ATLANTA, WHERE THEY

3022
02:01:57,960 --> 02:02:02,280
DO ACTIVE SURVEILLANCE AND THEY

3023
02:02:02,280 --> 02:02:05,320
GO TO THE CHART TO REALLY

3024
02:02:05,320 --> 02:02:07,520
UNDERSTAND BIRTH DEFECTS FOR

3025
02:02:07,520 --> 02:02:08,160
METROPOLITAN ATLANTA.

3026
02:02:08,160 --> 02:02:09,760
I'M NOT SURE IF THE PROGRAM IS

3027
02:02:09,760 --> 02:02:12,160
STILL GOING ON, AND I KNOW YEARS

3028
02:02:12,160 --> 02:02:16,560
AGO THAT THEY ADDED STILLBIRTH,

3029
02:02:16,560 --> 02:02:18,480
SO THEY WERE DOING ACTIVE

3030
02:02:18,480 --> 02:02:19,480
SURVEILLANCE ON STILLBIRTH AND

3031
02:02:19,480 --> 02:02:21,120
ADDED TO THE CHART, THEY ADDED

3032
02:02:21,120 --> 02:02:22,200
IT TO THE BIRTH DEFECTS

3033
02:02:22,200 --> 02:02:23,200
REGISTRY.

3034
02:02:23,200 --> 02:02:23,880
DOES ANYBODY KNOW IF THAT'S

3035
02:02:23,880 --> 02:02:25,520
BEING DONE ON THAT KIND OF

3036
02:02:25,520 --> 02:02:26,840
ACTIVE SURVEILLANCE GOING TO

3037
02:02:26,840 --> 02:02:28,440
CHARTS AND REALLY EVALUATING THE

3038
02:02:28,440 --> 02:02:33,360
CASES FOR A POPULATION, FOR A

3039
02:02:33,360 --> 02:02:35,440
PARTICULAR AREA TO FIND BY

3040
02:02:35,440 --> 02:02:38,840
GEOGRAPHIC AREA?

3041
02:02:38,840 --> 02:02:40,520
>>DR. BARFIELD?

3042
02:02:40,520 --> 02:02:42,600
>>I THINK DR. COHEN MAY
BE ON

3043
02:02:42,600 --> 02:02:44,920
THE CALL, BUT SHE MAY NOT HAVE

3044
02:02:44,920 --> 02:02:48,640
BEEN ABLE TO STAY FOR THE WHOLE

3045
02:02:48,640 --> 02:02:49,120
TIME.

3046
02:02:49,120 --> 02:02:51,080
BUT ESSENTIALLY THERE WERE SOME

3047
02:02:51,080 --> 02:02:53,280
STUDIES -- THERE WAS ONE STUDY

3048
02:02:53,280 --> 02:02:55,800
SPECIFICALLY IN IOWA WHERE THERE

3049
02:02:55,800 --> 02:02:58,040
WAS SOME WORK DONE TO TRY TO DO

3050
02:02:58,040 --> 02:03:03,080
SOME LINKAGES WITH BIRTH DEFECTS

3051
02:03:03,080 --> 02:03:04,840
AND STILLBIRTH REGISTRIES, AND

3052
02:03:04,840 --> 02:03:07,240
THIS, AGAIN, WAS THROUGH THE

3053
02:03:07,240 --> 02:03:09,040
DIVISION OF BIRTH DEFECTS AND

3054
02:03:09,040 --> 02:03:13,120
INFANT DISORDERS.

3055
02:03:13,120 --> 02:03:14,280
AND CURRENTLY IN TERMS OF SOME

3056
02:03:14,280 --> 02:03:15,920
OF THE WORK WITH METROPOLITAN

3057
02:03:15,920 --> 02:03:16,960
ATLANTA, I THINK THAT'S THE

3058
02:03:16,960 --> 02:03:21,840
CASE, BUT I DON'T THINK IT IS AS

3059
02:03:21,840 --> 02:03:22,360
COMPREHENSIVE, PER SE.

3060
02:03:22,360 --> 02:03:25,800
AND SOME STATE DO INCLUDE

3061
02:03:25,800 --> 02:03:27,120
STILLBIRTH IN THEIR BIRTH

3062
02:03:27,120 --> 02:03:30,280
DEFECTS REGISTRIES.

3063
02:03:30,280 --> 02:03:31,640
SO I JUST THINK THAT IT MAY NOT

3064
02:03:31,640 --> 02:03:35,920
BE AS COMPREHENSIVE.

3065
02:03:35,920 --> 02:03:37,480
BUT I THINK THERE WAS ANOTHER

3066
02:03:37,480 --> 02:03:38,240
IMPORTANT POINT THAT WAS RAISED,

3067
02:03:38,240 --> 02:03:39,680
AND I THINK WE REALLY HAVE TO

3068
02:03:39,680 --> 02:03:41,240
THINK ABOUT THESE BROADER

3069
02:03:41,240 --> 02:03:44,840
BARRIERS TO DATA.

3070
02:03:44,840 --> 02:03:47,120
ONE -- SO I'M A NEONATOLOGIST BY

3071
02:03:47,120 --> 02:03:48,760
TRAINING, SO IN THE DELIVERY

3072
02:03:48,760 --> 02:03:50,480
ROOM A LOT, AND I THINK PART OF

3073
02:03:50,480 --> 02:03:54,800
THE CHALLENGE IS THAT, YOU KNOW,

3074
02:03:54,800 --> 02:03:58,400
THESE EVENTS, ALBEIT INCREDIBLY

3075
02:03:58,400 --> 02:03:59,520
TRAGIC, PROBABLY DON'T GET THE

3076
02:03:59,520 --> 02:04:02,640
ATTENTION THAT THEY DESERVE AT

3077
02:04:02,640 --> 02:04:04,280
THE TIME OF THE ACTUAL EVENT IN

3078
02:04:04,280 --> 02:04:06,440
TERMS OF DATA COLLECTION AND

3079
02:04:06,440 --> 02:04:07,440
FURTHER INFORMATION.

3080
02:04:07,440 --> 02:04:09,800
I THINK THE OTHER THING, TOO,

3081
02:04:09,800 --> 02:04:13,960
THAT'S REALLY AN ISSUE IS THE

3082
02:04:13,960 --> 02:04:15,720
TRAINING OF PLACENTAL

3083
02:04:15,720 --> 02:04:16,800
PATHOLOGISTS, WHICH I THINK WAS

3084
02:04:16,800 --> 02:04:19,200
MENTIONED BY ONE OF THE PARENTS,

3085
02:04:19,200 --> 02:04:21,040
AND HOW THAT IS READILY

3086
02:04:21,040 --> 02:04:25,400
AVAILABLE OR NOT AVAILABLE.

3087
02:04:25,400 --> 02:04:27,120
>>PLEASE MUTE YOURSELF IF

3088
02:04:27,120 --> 02:04:27,560
YOU'RE NOT SPEAKING.

3089
02:04:27,560 --> 02:04:37,720
THANK YOU.

3090
02:04:40,120 --> 02:04:41,560
>>WANDA, I'M SORRY, A
LITTLE

3091
02:04:41,560 --> 02:04:42,960
BIT OF WHAT YOU WERE SAYING

3092
02:04:42,960 --> 02:04:44,120
TOWARDS THE END GOT MUFFLED WITH

3093
02:04:44,120 --> 02:04:49,080
THE VOICES IN THE BACKGROUND.

3094
02:04:49,080 --> 02:04:51,440
LET ME ADD TO THE QUESTION

3095
02:04:51,440 --> 02:04:52,520
DR. REDDY RAISED.

3096
02:04:52,520 --> 02:04:57,200
IF THE STILLBIRTH REGISTRY IS NO

3097
02:04:57,200 --> 02:05:00,000
LONGER ACTIVE AT THE CDC RIGHT

3098
02:05:00,000 --> 02:05:01,880
NOW, WHAT WOULD IT TAKE TO

3099
02:05:01,880 --> 02:05:05,400
ACTUALLY INITIATE ONE?

3100
02:05:05,400 --> 02:05:06,800
BECAUSE REALLY, THERE NEEDS TO

3101
02:05:06,800 --> 02:05:10,800
BE ONE SOURCE OF TRUTH FOR THIS

3102
02:05:10,800 --> 02:05:12,320
TRAGEDY THAT HAPPENS TO MANY

3103
02:05:12,320 --> 02:05:15,280
FAMILIES, BUT ULTIMATELY THAT

3104
02:05:15,280 --> 02:05:18,080
GUIDES FUTURE RESEARCH AND ALSO

3105
02:05:18,080 --> 02:05:23,560
PREVENTIVE MEASURES.

3106
02:05:23,560 --> 02:05:25,200
>>YES, I THINK THERE HAS
BEEN

3107
02:05:25,200 --> 02:05:26,920
SOME PRIOR WORK IN THIS AREA AND

3108
02:05:26,920 --> 02:05:27,960
THAT IT REALLY -- YOU KNOW, THAT

3109
02:05:27,960 --> 02:05:30,960
IT WOULD BE IMPORTANT BUT IT

3110
02:05:30,960 --> 02:05:32,680
WOULD REQUIRE THE RESOURCES IN

3111
02:05:32,680 --> 02:05:36,240
TERMS OF DATA COLLECTION AND,

3112
02:05:36,240 --> 02:05:41,280
YOU KNOW, ADDITIONAL INFORMATION

3113
02:05:41,280 --> 02:05:42,840
THAT CURRENTLY IS NOT BEING

3114
02:05:42,840 --> 02:05:44,080
RESOURCED.

3115
02:05:44,080 --> 02:05:45,640
THIS DATA COLLECTION IS, AS YOU

3116
02:05:45,640 --> 02:05:47,360
KNOW, FAIRLY LABOR INTENSIVE IN

3117
02:05:47,360 --> 02:05:51,280
TERMS OF CHART REVIEW,

3118
02:05:51,280 --> 02:05:51,880
EXAMINATION, GATHERING

3119
02:05:51,880 --> 02:05:55,080
INFORMATION.

3120
02:05:55,080 --> 02:05:56,920
SIMILARLY TO MATERNAL MORTALITY

3121
02:05:56,920 --> 02:05:59,680
REVIEW, IT MAY BE THEN IN SOME

3122
02:05:59,680 --> 02:06:01,920
WAYS BECAUSE MATERNAL MORTALITY

3123
02:06:01,920 --> 02:06:03,800
IS LESS FREQUENT, THAT THE

3124
02:06:03,800 --> 02:06:06,320
AMOUNT OF TIME THAT IT TAKES MAY

3125
02:06:06,320 --> 02:06:08,640
BE DIFFERENT BUT FOR THE REVIEW

3126
02:06:08,640 --> 02:06:12,480
OF STILL PI STILLBIRTHS IN A RE,

3127
02:06:12,480 --> 02:06:16,600
AGAIN, IT WOULD TAKE A LOT OF

3128
02:06:16,600 --> 02:06:18,360
INPUT, AND THE BIRTH DEFECTS

3129
02:06:18,360 --> 02:06:19,240
CENTER HAS A LOT OF EXPERIENCE

3130
02:06:19,240 --> 02:06:19,640
IN THAT AREA.

3131
02:06:19,640 --> 02:06:21,560
>>YEAH, THAT WAS MY ONLY
POINT,

3132
02:06:21,560 --> 02:06:24,960
THAT YOU KNOW, WE'RE DOING BIRTH

3133
02:06:24,960 --> 02:06:26,840
DEFECTS REGISTRY AND DOING THAT

3134
02:06:26,840 --> 02:06:28,240
KIND OF THOROUGH EVALUATION.

3135
02:06:28,240 --> 02:06:32,120
SO I THINK IN TERMS OF GETTING

3136
02:06:32,120 --> 02:06:33,240
DETAILED INFORMATION,

3137
02:06:33,240 --> 02:06:35,120
EVALUATIONS, TALKING TO

3138
02:06:35,120 --> 02:06:36,480
FAMILIES, IT CAN'T BE

3139
02:06:36,480 --> 02:06:37,360
NATIONWIDE, YOU'RE RIGHT, BUT IF

3140
02:06:37,360 --> 02:06:40,400
YOU HAVE FOCUSED AREAS WHERE

3141
02:06:40,400 --> 02:06:42,200
THERE'S A HIGH RATE OF

3142
02:06:42,200 --> 02:06:43,200
STILLBIRTH, YOU KNOW, I THINK

3143
02:06:43,200 --> 02:06:45,080
THAT KIND OF DETAILED DATA IS

3144
02:06:45,080 --> 02:06:46,720
NEEDED TO GET AT THE RACIAL

3145
02:06:46,720 --> 02:06:50,640
DISPARITY AND STILLBIRTH AND SO

3146
02:06:50,640 --> 02:06:52,040
SIMILAR -- SO THAT'S WHAT I WAS

3147
02:06:52,040 --> 02:06:54,800
ASKING, REALLY, IS THAT -- DOES

3148
02:06:54,800 --> 02:06:55,560
THAT HAVE A ROLE.

3149
02:06:55,560 --> 02:06:56,680
BUT YOU'RE RIGHT, YOU CAN'T DO

3150
02:06:56,680 --> 02:06:58,600
IT FOR THE ENTIRE COUNTRY, BUT

3151
02:06:58,600 --> 02:07:00,320
MAYBE FOCUSED POPULATIONS.

3152
02:07:00,320 --> 02:07:03,120
>>RIGHT, AND I THINK DR.
COHEN

3153
02:07:03,120 --> 02:07:05,120
IS RAISING HER HAND SO SHE CAN

3154
02:07:05,120 --> 02:07:06,000
CERTAINLY TALK MORE ABOUT THIS.

3155
02:07:06,000 --> 02:07:07,600
>>YEAH, I THINK
EVERYTHING YOU

3156
02:07:07,600 --> 02:07:09,560
GUYS ARE SAYING ARE CORRECT.

3157
02:07:09,560 --> 02:07:11,840
YOU COULD DO EITHER -- AND WE

3158
02:07:11,840 --> 02:07:16,840
ARE STARTING TO DO A BIRTH

3159
02:07:16,840 --> 02:07:17,920
DEFECT -- INCLUDE BIRTH DEFECTS

3160
02:07:17,920 --> 02:07:20,360
IN TWO OF OUR SITES THAT ARE

3161
02:07:20,360 --> 02:07:23,520
DOING THE -- SORRY, TWO SITES

3162
02:07:23,520 --> 02:07:26,000
WE'RE INCLUDING STILLBIRTH OF

3163
02:07:26,000 --> 02:07:27,400
THE SITES THAT ARE DOING CASE

3164
02:07:27,400 --> 02:07:30,040
CONTROL RISK FACTOR STUDIES FOR

3165
02:07:30,040 --> 02:07:31,840
BIRTH DEFECTS, BUT THE CURRENT

3166
02:07:31,840 --> 02:07:34,560
FUNDING THAT WE HAVE IS REALLY

3167
02:07:34,560 --> 02:07:37,200
FRANKLY MINUSCULE COMPARED TO --

3168
02:07:37,200 --> 02:07:42,560
AND WE DON'T EVEN REALLY HAVE A

3169
02:07:42,560 --> 02:07:45,360
LOT TO BIRTH DEFECTS RISK FACTOR

3170
02:07:45,360 --> 02:07:46,080
STUDIES.

3171
02:07:46,080 --> 02:07:48,880
WE COULD BUILD THAT INTO WHAT

3172
02:07:48,880 --> 02:07:51,560
ALREADY EXISTS, BUT WE WOULD

3173
02:07:51,560 --> 02:07:53,920
NEED SUBSTANTIAL AND HONESTLY IT

3174
02:07:53,920 --> 02:07:55,720
WOULD BE SUBSTANTIAL RESOURCES

3175
02:07:55,720 --> 02:07:58,800
AND IT WOULD TAKE A FEW YEARS TO

3176
02:07:58,800 --> 02:08:00,160
BE ABLE TO INCORPORATE THAT

3177
02:08:00,160 --> 02:08:01,400
ENTIRELY TO WHAT WE'RE CURRENTLY

3178
02:08:01,400 --> 02:08:05,840
DOING IN BIRTH DEERVEGHTS.

3179
02:08:05,840 --> 02:08:06,520
 BIRTH DEFECTS.

3180
02:08:06,520 --> 02:08:11,640
>>AMANDA, I'M SORRY,
WANDA, GO

3181
02:08:11,640 --> 02:08:12,360
AHEAD, PLEASE.

3182
02:08:12,360 --> 02:08:15,880
I HAVE JUST A QUICK COMMENT

3183
02:08:15,880 --> 02:08:19,280
REGARDING THE SIZE OF THE

3184
02:08:19,280 --> 02:08:19,800
PROBLEM.

3185
02:08:19,800 --> 02:08:21,840
I WOULD THINK, AMANDA, THAT

3186
02:08:21,840 --> 02:08:24,800
COMPARED TO THE SIZE OF THE

3187
02:08:24,800 --> 02:08:26,680
BIRTH DEFECTS REGISTRY, THE

3188
02:08:26,680 --> 02:08:27,640
STILLBIRTH REGISTRY WOULD STILL

3189
02:08:27,640 --> 02:08:34,360
BE RELATIVELY SMALL.

3190
02:08:34,360 --> 02:08:35,880
>>I'D HAVE TO THINK ABOUT
IT.

3191
02:08:35,880 --> 02:08:37,600
I'D HAVE TO DO THE NUMBERS AND I

3192
02:08:37,600 --> 02:08:39,720
CAN CERTAINLY COME BACK AT A

3193
02:08:39,720 --> 02:08:40,360
FUTURE MEETING WITH SOME MORE

3194
02:08:40,360 --> 02:08:40,680
INFORMATION.

3195
02:08:40,680 --> 02:08:42,920
I KNOW THAT PEOPLE ON MY TEAM

3196
02:08:42,920 --> 02:08:45,520
HAVE LOOKED AT THIS MORE

3197
02:08:45,520 --> 02:08:46,600
CLOSELY.

3198
02:08:46,600 --> 02:08:48,440
BUT -- AND SONJA MAY HAVE SOME

3199
02:08:48,440 --> 02:08:51,680
EXPERIENCE FROM PREVIOUSLY, BUT

3200
02:08:51,680 --> 02:08:55,280
IT WOULD BE, ESPECIALLY IF YOU

3201
02:08:55,280 --> 02:08:56,600
DID -- YOU WOULDN'T BE ABLE

3202
02:08:56,600 --> 02:08:57,920
TO -- THE NUMBERS WOULD STILL BE

3203
02:08:57,920 --> 02:09:04,040
SMALL, BUT YOU COULD DO SOME

3204
02:09:04,040 --> 02:09:05,120
RISK FACTOR STUDIES ASSOCIATED

3205
02:09:05,120 --> 02:09:08,400
WITH THOSE NUMBERS THAT COULD

3206
02:09:08,400 --> 02:09:10,160
DEMONSTRATE SOME OF THE

3207
02:09:10,160 --> 02:09:13,000
POTENTIAL -- COULD IDENTIFY SOME

3208
02:09:13,000 --> 02:09:15,040
POTENTIAL PREVENTABLE CAUSES.

3209
02:09:15,040 --> 02:09:17,120
AND THAT'S BECAUSE WE DO ENROLL

3210
02:09:17,120 --> 02:09:19,520
CONTROLS WITH EACH OF THOSE

3211
02:09:19,520 --> 02:09:20,720
BIRTH DEFECTS CASES.

3212
02:09:20,720 --> 02:09:22,000
IT SORT OF POWERS US TO

3213
02:09:22,000 --> 02:09:23,560
UNDERSTAND A LITTLE BIT MORE

3214
02:09:23,560 --> 02:09:25,600
THAN JUST BY ENROLLING THE BIRTH

3215
02:09:25,600 --> 02:09:29,080
DEFECT CASES ALONE.

3216
02:09:29,080 --> 02:09:30,080
>>GOT IT.

3217
02:09:30,080 --> 02:09:31,760
DR. BAR FIELD AND DR. SILVER.

3218
02:09:31,760 --> 02:09:34,400
>>YES, JUST ANOTHER AREA
THAT'S

3219
02:09:34,400 --> 02:09:37,320
POTENTIALLY PROMISING THAT

3220
02:09:37,320 --> 02:09:39,080
DR. SILVER MAY BE AWARE OF IS

3221
02:09:39,080 --> 02:09:40,160
THE OPPORTUNITY TO USE THE

3222
02:09:40,160 --> 02:09:41,800
PREGNANCY RISK ASSESSMENT

3223
02:09:41,800 --> 02:09:44,600
MONITORING SYSTEM.

3224
02:09:44,600 --> 02:09:48,960
OR PRAMS FOR STILLBIRTH

3225
02:09:48,960 --> 02:09:49,400
SURVEILLANCE.

3226
02:09:49,400 --> 02:09:51,360
WE ACTUALLY DO HAVE A SITE IN

3227
02:09:51,360 --> 02:09:54,960
UTAH CURRENTLY THAT IS LOOKING

3228
02:09:54,960 --> 02:09:56,960
AT STILLBIRTH.

3229
02:09:56,960 --> 02:10:00,840
SO THAT MAY BE A POSSIBILITY AS

3230
02:10:00,840 --> 02:10:01,800
WELL, PARTICULARLY IN GETTING

3231
02:10:01,800 --> 02:10:03,440
SOME OF THE FACTORS THAT OTHERS

3232
02:10:03,440 --> 02:10:05,400
HAVE MENTIONED AROUND SOCIAL

3233
02:10:05,400 --> 02:10:06,800
DETERMINANTS OF HEALTH, AND

3234
02:10:06,800 --> 02:10:08,680
OTHER FACTORS.

3235
02:10:08,680 --> 02:10:11,640
AGAIN, AS A COMPLEMENT TO THE

3236
02:10:11,640 --> 02:10:12,280
CURRENT AREAS.

3237
02:10:12,280 --> 02:10:14,440
AND WE'VE ALSO DONE SOME

3238
02:10:14,440 --> 02:10:20,640
EXPLORATION ON THE COMFORT THAT

3239
02:10:20,640 --> 02:10:22,080
WOMEN MAY HAVE IN ASKING ABOUT

3240
02:10:22,080 --> 02:10:23,160
THEIR RECENT STILLBIRTH, AND

3241
02:10:23,160 --> 02:10:24,240
WOMEN ARE WILLING TO TALK ABOUT

3242
02:10:24,240 --> 02:10:29,960
IT.

3243
02:10:29,960 --> 02:10:32,760
>>THANK YOU, DR.
BARFIELD.

3244
02:10:32,760 --> 02:10:37,360
DR. SILVER?

3245
02:10:37,360 --> 02:10:38,560
BOB, YOU'RE STILL -- IT LOOKS

3246
02:10:38,560 --> 02:10:39,560
LIKE YOU'RE STILL MUTED.

3247
02:10:39,560 --> 02:10:40,360
>>SORRY.

3248
02:10:40,360 --> 02:10:41,920
THANK YOU, DR. BARFIELD.

3249
02:10:41,920 --> 02:10:50,880
AND WE DO HAVE THIS SOARS

3250
02:10:50,880 --> 02:10:53,480
PROGRAM TO GATHER EPIDEMIOLOGIC

3251
02:10:53,480 --> 02:10:55,360
DATA AND IT'S A RELATIVELY

3252
02:10:55,360 --> 02:10:57,760
INEXPENSIVE APPROACH.

3253
02:10:57,760 --> 02:11:00,120
WE'RE OFFERING EVERYBODY WHO

3254
02:11:00,120 --> 02:11:03,320
PARTICIPATE IN THE SOARS STUDY

3255
02:11:03,320 --> 02:11:04,960
AN IN-PERSON CONSULTATION AT NO

3256
02:11:04,960 --> 02:11:07,440
CHARGE WHERE WE CAN DIG DEEPER,

3257
02:11:07,440 --> 02:11:11,600
AND THAT'S BEEN A REALLY

3258
02:11:11,600 --> 02:11:12,240
VALUABLE THING.

3259
02:11:12,240 --> 02:11:17,840
BUT AGAIN, THE PROBLEM WITH IT

3260
02:11:17,840 --> 02:11:19,600
IS IT'S SIMPLY UNDERFUNDED.

3261
02:11:19,600 --> 02:11:20,840
THERE'S NOT ENOUGH MONEY FOR THE

3262
02:11:20,840 --> 02:11:23,040
STATE HEALTH DEPARTMENTS AND I

3263
02:11:23,040 --> 02:11:26,920
RELY ON THE GOODWILL OF DOCS TO

3264
02:11:26,920 --> 02:11:28,720
DO IT SO WE'RE NOT ABLE TO DO

3265
02:11:28,720 --> 02:11:30,120
ALL OF THE CASES, WE CAN ONLY DO

3266
02:11:30,120 --> 02:11:32,120
A SUBSET OF THE CASES.

3267
02:11:32,120 --> 02:11:33,320
THE OTHER THING I WANTED TO

3268
02:11:33,320 --> 02:11:34,720
THROW OUT THERE IS THAT IN OTHER

3269
02:11:34,720 --> 02:11:38,960
COUNTRIES WITH SIMILAR

3270
02:11:38,960 --> 02:11:41,440
RESOURCES, WE ARE ABLE TO DO

3271
02:11:41,440 --> 02:11:43,600
PERINATAL AUDITS ON 100% OF

3272
02:11:43,600 --> 02:11:43,960
STILLBIRTHS.

3273
02:11:43,960 --> 02:11:45,600
THERE'S NO QUESTION THAT IT'S

3274
02:11:45,600 --> 02:11:46,960
VERY CHALLENGING TO GO FROM

3275
02:11:46,960 --> 02:11:52,320
WHERE WE ARE RIGHT NOW TO 100%,

3276
02:11:52,320 --> 02:11:54,000
AND OUR COUNTRY IS DIFFERENT AND

3277
02:11:54,000 --> 02:11:54,280
COMPLICATED.

3278
02:11:54,280 --> 02:11:56,120
BUT I THINK WE SHOULD AT LEAST

3279
02:11:56,120 --> 02:11:58,760
ASPIRE TO IT.

3280
02:11:58,760 --> 02:12:00,480
AND SO AS WE WORK THROUGH THIS,

3281
02:12:00,480 --> 02:12:02,120
MAYBE WE CAN SAY THIS IS

3282
02:12:02,120 --> 02:12:03,320
REALISTIC FOR US TO DO IN THE

3283
02:12:03,320 --> 02:12:06,080
NEXT YEAR OR TWO, BUT THIS IS

3284
02:12:06,080 --> 02:12:07,360
WHERE WE REALLY WANT TO GO AND

3285
02:12:07,360 --> 02:12:08,520
THIS IS HOW MUCH RESOURCE IT'S

3286
02:12:08,520 --> 02:12:11,160
GOING TO TAKE.

3287
02:12:11,160 --> 02:12:12,560
BUT I'D SURE LIKE TO SEE US

3288
02:12:12,560 --> 02:12:13,760
EVENTUALLY GET TO A PLACE WHERE

3289
02:12:13,760 --> 02:12:16,800
WE CAN DO 100% OF THESE CASES

3290
02:12:16,800 --> 02:12:19,680
AND GIVE EACH ONE OF THESE CASES

3291
02:12:19,680 --> 02:12:25,320
THE EVALUATION THAT WOULD BE

3292
02:12:25,320 --> 02:12:25,520
IDEAL.

3293
02:12:25,520 --> 02:12:26,000
>>GREAT.

3294
02:12:26,000 --> 02:12:30,720
THAT'S SUCH A RICH CONVERSATION.

3295
02:12:30,720 --> 02:12:30,920
GREAT.

3296
02:12:30,920 --> 02:12:33,040
THANK YOU.

3297
02:12:33,040 --> 02:12:35,640
OTHER QUESTIONS, COMMENTS?

3298
02:12:35,640 --> 02:12:36,600
MONICA, I WANT TO RETURN THIS

3299
02:12:36,600 --> 02:12:37,240
BACK TO YOU.

3300
02:12:37,240 --> 02:12:39,520
DO YOU HAVE ANY OTHER

3301
02:12:39,520 --> 02:12:41,440
PRESENTATIONS BEFORE WE MOVE TO

3302
02:12:41,440 --> 02:12:43,000
THE NEXT SESSION?

3303
02:12:43,000 --> 02:12:46,080
>>NO, WE DON'T, DR. JAIN.

3304
02:12:46,080 --> 02:12:48,160
WE ARE JUST GOING TO TRY TO WRAP

3305
02:12:48,160 --> 02:12:50,400
UP OUR DISCUSSION AND TRY TO GO

3306
02:12:50,400 --> 02:12:54,840
TO OUR ACTION ITEM.

3307
02:12:54,840 --> 02:12:55,680
>>GREAT.

3308
02:12:55,680 --> 02:12:57,560
HOW ABOUT WE GIVE OURSELVES

3309
02:12:57,560 --> 02:12:58,800
MAYBE 10 OR 11 MORE MINUTES AND

3310
02:12:58,800 --> 02:13:01,320
THEN WE CAN MOVE INTO OUR

3311
02:13:01,320 --> 02:13:01,920
WRAP-UP SESSION?

3312
02:13:01,920 --> 02:13:02,760
>>SOUNDS GREAT.

3313
02:13:02,760 --> 02:13:03,280
>>OKAY.

3314
02:13:03,280 --> 02:13:06,600
ALL RIGHT.

3315
02:13:06,600 --> 02:13:10,440
SO EMILY?

3316
02:13:10,440 --> 02:13:11,120
>>THANK YOU FOR THE

3317
02:13:11,120 --> 02:13:11,680
OPPORTUNITY.

3318
02:13:11,680 --> 02:13:12,720
I JUST HAVE ONE MORE QUESTION AS

3319
02:13:12,720 --> 02:13:13,800
WE WERE TALKING ABOUT FUNDING

3320
02:13:13,800 --> 02:13:15,400
AND WHAT NEEDS TO BE STUDIED IN

3321
02:13:15,400 --> 02:13:16,800
DATA COLLECTION, AND I THOUGHT I

3322
02:13:16,800 --> 02:13:19,960
WOULD JUST MAYBE PLANT THE SEED

3323
02:13:19,960 --> 02:13:21,160
AT THE IDEA OF A STILLBIRTH

3324
02:13:21,160 --> 02:13:22,200
PREVENTION BUNDLE IN THIS

3325
02:13:22,200 --> 02:13:22,520
COUNTRY.

3326
02:13:22,520 --> 02:13:23,600
THIS IS WHAT WE'RE SEEING

3327
02:13:23,600 --> 02:13:25,120
PROGRESS WITH IN OTHER

3328
02:13:25,120 --> 02:13:25,640
COUNTRIES.

3329
02:13:25,640 --> 02:13:27,800
THE U.K., AUSTRALIA AND OTHER

3330
02:13:27,800 --> 02:13:28,280
PLACES.

3331
02:13:28,280 --> 02:13:29,440
THE IDEA OF A BUNDLE.

3332
02:13:29,440 --> 02:13:30,640
JUST LIKE WE'RE DOING WITH

3333
02:13:30,640 --> 02:13:32,960
MATERNAL MORTALITY IN THIS

3334
02:13:32,960 --> 02:13:33,680
COUNTRY.

3335
02:13:33,680 --> 02:13:35,240
AND AS SOME OF OUR ORGANIZATIONS

3336
02:13:35,240 --> 02:13:36,880
HAVE BEEN STUDYING WHAT WOULD GO

3337
02:13:36,880 --> 02:13:39,880
INTO A BUNDLE, ESPECIALLY VERY

3338
02:13:39,880 --> 02:13:43,200
SPECIFICALLY TO THE UNITED

3339
02:13:43,200 --> 02:13:44,520
STATES, AND I JUST WANTED TO

3340
02:13:44,520 --> 02:13:46,760
PLANT THE SEED OF THE IDEA OF A

3341
02:13:46,760 --> 02:13:50,960
BUNDLE, IF WE'RE LOOKING AT THIS

3342
02:13:50,960 --> 02:13:52,640
HOLISTICALLY DATA COLLECTION,

3343
02:13:52,640 --> 02:13:53,320
PREVENTION, SEVERAL EFFORTS THAT

3344
02:13:53,320 --> 02:13:54,560
COULD COMBINE INTO ONE TO HELP

3345
02:13:54,560 --> 02:13:57,040
PREVENT STILLBIRTH IN THIS

3346
02:13:57,040 --> 02:13:57,400
COUNTRY.

3347
02:13:57,400 --> 02:13:59,440
WE'VE DONE IT FOR MATERNAL

3348
02:13:59,440 --> 02:14:02,160
MORTALITY, IT'S HELPING, AND I

3349
02:14:02,160 --> 02:14:04,040
JUST -- I FEEL LIKE IT COULD

3350
02:14:04,040 --> 02:14:05,000
HELP STILLBIRTH AS WELL.

3351
02:14:05,000 --> 02:14:08,360
THANK YOU FOR THE TIME.

3352
02:14:08,360 --> 02:14:09,240
>>THANK YOU, EMILY.

3353
02:14:09,240 --> 02:14:12,440
THIS IS SO HELPFUL.

3354
02:14:12,440 --> 02:14:13,920
I THINK ALL THESE COMMENTS THAT

3355
02:14:13,920 --> 02:14:16,680
YOU ALL ARE MAKING IN THE

3356
02:14:16,680 --> 02:14:20,280
ENGAGEMENT IS GOING TO HELP THE

3357
02:14:20,280 --> 02:14:22,720
WORKING GROUP WITH ITS CHARGE.

3358
02:14:22,720 --> 02:14:25,280
LET'S SEE.

3359
02:14:25,280 --> 02:14:28,440
DR. BIANCHI, DO YOU HAVE ANY

3360
02:14:28,440 --> 02:14:30,600
OTHER THOUGHTS OR COMMENTS?

3361
02:14:30,600 --> 02:14:34,600
>>NO, I THINK THAT
CLEARLY

3362
02:14:34,600 --> 02:14:38,840
BETTER DATA ARE NEEDED, AND I

3363
02:14:38,840 --> 02:14:40,040
REALLY APPRECIATE DR. GREGORY'S

3364
02:14:40,040 --> 02:14:40,680
PRESENTATION AND SOME OF THE

3365
02:14:40,680 --> 02:14:48,440
OTHER EXAMPLES THAT HAVE BEEN

3366
02:14:48,440 --> 02:14:48,760
GIVEN.

3367
02:14:48,760 --> 02:14:50,320
SOME OF THE CLINICAL

3368
02:14:50,320 --> 02:14:52,040
RECOMMENDATIONS, THAT'S NOT THE

3369
02:14:52,040 --> 02:14:53,240
FOCUS PARTICULARLY OF THIS

3370
02:14:53,240 --> 02:14:53,680
GROUP.

3371
02:14:53,680 --> 02:14:58,200
I MEAN, BETTER DATA ARE GOING TO

3372
02:14:58,200 --> 02:15:02,400
INFORM THE RESEARCH QUESTIONS

3373
02:15:02,400 --> 02:15:03,520
THAT WILL THEN GENERATE THE

3374
02:15:03,520 --> 02:15:06,600
EVIDENCE THAT THEN CAN BE USED

3375
02:15:06,600 --> 02:15:12,640
BY PROFESSIONAL SOCIETIES AND

3376
02:15:12,640 --> 02:15:13,520
PROVIDERS TO CHANGE PRACTICE.

3377
02:15:13,520 --> 02:15:14,760
SO I THINK IT'S IMPORTANT FOR

3378
02:15:14,760 --> 02:15:17,880
EVERYONE TO UNDERSTAND KIND OF

3379
02:15:17,880 --> 02:15:22,080
THAT CONTINUUM, JUST SO WE DON'T

3380
02:15:22,080 --> 02:15:24,680
CREATE EXPECTATIONS THAT WE

3381
02:15:24,680 --> 02:15:26,000
CAN'T DELIVER.

3382
02:15:26,000 --> 02:15:27,280
THE NIH IS A RESEARCH

3383
02:15:27,280 --> 02:15:28,040
ORGANIZATION.

3384
02:15:28,040 --> 02:15:29,240
I DON'T MEAN THAT TO SOUND COLD

3385
02:15:29,240 --> 02:15:30,360
IN ANY WAY.

3386
02:15:30,360 --> 02:15:33,600
I AM A CLINICIAN, AT LEAST A

3387
02:15:33,600 --> 02:15:35,880
FORMER CLINICIAN, AND

3388
02:15:35,880 --> 02:15:37,840
UNFORTUNATELY HAVE BEEN IN THE

3389
02:15:37,840 --> 02:15:39,920
DELIVERY ROOM FOR DELIVERIES OF

3390
02:15:39,920 --> 02:15:42,800
BABIES THAT WERE VERY WANTED BUT

3391
02:15:42,800 --> 02:15:47,360
WERE NOT BORN ALIVE.

3392
02:15:47,360 --> 02:15:49,200
SO YOU KNOW, I THINK THAT'S MY

3393
02:15:49,200 --> 02:15:54,080
MAIN TAKEAWAY FROM THESE RECENT

3394
02:15:54,080 --> 02:15:55,160
PRESENTATIONS, IS THAT -- AND

3395
02:15:55,160 --> 02:15:58,360
THEY'RE VERY HELPFUL TO SEE WHAT

3396
02:15:58,360 --> 02:16:01,640
WE ALREADY KNOW BUT WHERE THE

3397
02:16:01,640 --> 02:16:02,600
GAPS ARE.

3398
02:16:02,600 --> 02:16:04,920
AND THINKING ABOUT HOW DO YOU

3399
02:16:04,920 --> 02:16:07,600
GET TO THE VARIETY OF PEOPLE WHO

3400
02:16:07,600 --> 02:16:09,600
ARE FILLING OUT THESE FORMS.

3401
02:16:09,600 --> 02:16:11,120
I MEAN, IF IT WERE JUST

3402
02:16:11,120 --> 02:16:12,600
PHYSICIANS, YOU MIGHT HAVE A WAY

3403
02:16:12,600 --> 02:16:15,600
TO LINK TO ANNUAL LICENSE

3404
02:16:15,600 --> 02:16:18,640
RENEWAL, FOR EXAMPLE, BUT IT NOT

3405
02:16:18,640 --> 02:16:19,280
JUST PHYSICIANS.

3406
02:16:19,280 --> 02:16:23,560
SO HOW DO YOU MOTIVATE THE

3407
02:16:23,560 --> 02:16:25,960
REGISTRAR IN THE HOSPITAL WHO'S

3408
02:16:25,960 --> 02:16:27,280
TRYING TO JUST FILL OUT THE

3409
02:16:27,280 --> 02:16:28,120
FORMS AND KEEP TRACK OF

3410
02:16:28,120 --> 02:16:30,640
EVERYTHING THAT HAPPENED.

3411
02:16:30,640 --> 02:16:34,800
SO I THINK IT'S BEEN A VERY RICH

3412
02:16:34,800 --> 02:16:37,400
DISCUSSION, AND WE'RE TAKING

3413
02:16:37,400 --> 02:16:38,600
NOTES OF EVERYTHING.

3414
02:16:38,600 --> 02:16:42,120
>>SO DIANA, THE REPORT
THAT IS

3415
02:16:42,120 --> 02:16:45,720
GENERATED FROM THIS ENGAGEMENT,

3416
02:16:45,720 --> 02:16:47,600
IT GOES BACK TO CONVENTIONAL

3417
02:16:47,600 --> 02:16:49,760
LEADERS, RIGHT?

3418
02:16:49,760 --> 02:16:51,040
AND WOULD THERE BE AN

3419
02:16:51,040 --> 02:16:56,320
OPPORTUNITY FOR AN ASK TO SET UP

3420
02:16:56,320 --> 02:16:57,720
SOME OF THE -- WHETHER IT'S A

3421
02:16:57,720 --> 02:17:00,880
REGISTRY OR IT'S A BUNDLE, A

3422
02:17:00,880 --> 02:17:02,080
PREVENTION BUNDLE THAT COULD BE

3423
02:17:02,080 --> 02:17:03,520
IMPLEMENTED FROM A PUBLIC HEALTH

3424
02:17:03,520 --> 02:17:09,160
STANDPOINT OR FURTHER ANALYSIS

3425
02:17:09,160 --> 02:17:11,720
OF THE INTERVENTIONS THAT COULD

3426
02:17:11,720 --> 02:17:12,880
BE DONE?

3427
02:17:12,880 --> 02:17:16,120
>>SO AGAIN, OUR MAIN
MISSION,

3428
02:17:16,120 --> 02:17:17,600
ONE OF THE REASONS WHY THIS WAS

3429
02:17:17,600 --> 02:17:20,640
ASSIGNED TO NIH IS TO DEVELOP A

3430
02:17:20,640 --> 02:17:22,440
RESEARCH AGENDA.

3431
02:17:22,440 --> 02:17:26,320
SO REGISTRY COULD BE PART OF

3432
02:17:26,320 --> 02:17:28,040
ACQUIRING DATA, WHICH WILL THEN

3433
02:17:28,040 --> 02:17:30,680
INFORM THE RESEARCH AGENDA.

3434
02:17:30,680 --> 02:17:35,520
WITH REGARD TO THE BUNDLES,

3435
02:17:35,520 --> 02:17:36,920
THAT'S NOT REALLY IN OUR

3436
02:17:36,920 --> 02:17:37,360
PURVIEW.

3437
02:17:37,360 --> 02:17:40,680
I DON'T WANT TO IGNORE IT.

3438
02:17:40,680 --> 02:17:42,160
WE MIGHT BE ABLE TO MENTION IT,

3439
02:17:42,160 --> 02:17:45,680
BUT WE ARE NOT GOING TO BE ABLE

3440
02:17:45,680 --> 02:17:47,120
TO CHANGE THAT NEEDLE.

3441
02:17:47,120 --> 02:17:49,920
THAT'S NOT OUR PURVIEW.

3442
02:17:49,920 --> 02:17:52,200
THERE ARE OTHER ASPECTS OF THE

3443
02:17:52,200 --> 02:17:53,600
GOVERNMENT THAT MIGHT HAVE THE

3444
02:17:53,600 --> 02:17:55,960
ABILITY TO DO THAT, AND WE CAN

3445
02:17:55,960 --> 02:17:58,640
CERTAINLY COMMUNICATE WITH THEM.

3446
02:17:58,640 --> 02:18:00,200
BUT I THINK IT'S GOING TO -- WE

3447
02:18:00,200 --> 02:18:03,320
COULD BE MOST HELPFUL TO ALL OF

3448
02:18:03,320 --> 02:18:05,880
YOU IF WE STAY FOCUSED ON WHAT

3449
02:18:05,880 --> 02:18:08,800
DO WE NEED TO MAKE SURE WE HAVE

3450
02:18:08,800 --> 02:18:09,760
ACCURATE DATA.

3451
02:18:09,760 --> 02:18:12,600
AND IT'S ABSOLUTELY FAIR TO SAY

3452
02:18:12,600 --> 02:18:14,600
HOW CAN WE GET THE DATA WHEN

3453
02:18:14,600 --> 02:18:22,000
PARENTS ARE NOT GIVEN THE

3454
02:18:22,000 --> 02:18:24,000
OPPORTUNITY TO HAVE THE FULL

3455
02:18:24,000 --> 02:18:26,400
INVESTIGATION DONE ON THEIR MUCH

3456
02:18:26,400 --> 02:18:27,200
WANTED LOST BABY.

3457
02:18:27,200 --> 02:18:28,880
AND I THINK WE CAN INCLUDE THAT

3458
02:18:28,880 --> 02:18:29,440
IN THE REPORT.

3459
02:18:29,440 --> 02:18:30,560
I DON'T KNOW IF ANYBODY ELSE

3460
02:18:30,560 --> 02:18:37,400
WANTS TO ADD ANYTHING.

3461
02:18:37,400 --> 02:18:39,600
>>DR. REDDY, ANY PARTING

3462
02:18:39,600 --> 02:18:42,280
THOUGHTS FROM YOU?

3463
02:18:42,280 --> 02:18:45,360
>>ON DR. BIANCHI'S LAST
POINT,

3464
02:18:45,360 --> 02:18:47,560
THE AMERICAN COLLEGE OF OB-GYN

3465
02:18:47,560 --> 02:18:48,920
IN 2020 CAME UP WITH A

3466
02:18:48,920 --> 02:18:51,400
COMPREHENSIVE GUIDELINE ON

3467
02:18:51,400 --> 02:18:53,560
MANAGEMENT AND EVALUATION FOR

3468
02:18:53,560 --> 02:18:57,400
STILLBIRTH, AND YOU KNOW, IT HAS

3469
02:18:57,400 --> 02:18:58,800
A CHART, IT SAYS THESE ARE THE

3470
02:18:58,800 --> 02:19:00,200
TESTS YOU NEED TO DO, IT GOES

3471
02:19:00,200 --> 02:19:01,080
THROUGH THE EVIDENCE, IT GOES

3472
02:19:01,080 --> 02:19:02,640
THROUGH THE RISK FACTORS.

3473
02:19:02,640 --> 02:19:06,040
SO YEAH, I THINK THE EMPHASIS ON

3474
02:19:06,040 --> 02:19:08,840
HOW DO WE GET HOSPITALS AND

3475
02:19:08,840 --> 02:19:11,120
PROVIDERS TO DO THAT BASIC

3476
02:19:11,120 --> 02:19:12,400
EVALUATION, BECAUSE WE DO, WE

3477
02:19:12,400 --> 02:19:13,680
HAVE TO BETTER UNDERSTAND THE

3478
02:19:13,680 --> 02:19:16,080
CAUSES SO WE CAN THEN PREVENT

3479
02:19:16,080 --> 02:19:18,840
STILLBIRTHS.

3480
02:19:18,840 --> 02:19:20,880
THERE IS A QUESTION ABOUT

3481
02:19:20,880 --> 02:19:21,880
STILLBIRTH PREVENTION.

3482
02:19:21,880 --> 02:19:23,920
IT DOES TALK -- YEAH, IT DOESN'T

3483
02:19:23,920 --> 02:19:26,200
DIRECTLY TALK ABOUT STILLBIRTH

3484
02:19:26,200 --> 02:19:27,520
PREVENTION, IT TALKS ABOUT THE

3485
02:19:27,520 --> 02:19:29,280
RISK FACTORS ASSOCIATED WITH

3486
02:19:29,280 --> 02:19:33,760
STILLBIRTH PREVENTION.

3487
02:19:33,760 --> 02:19:35,720
BUT YEAH, I THINK RESEARCH ON

3488
02:19:35,720 --> 02:19:38,320
SOME OF THE ITEMS MENTIONED

3489
02:19:38,320 --> 02:19:40,840
ABOUT ULTRASOUNDS, ESSENTIAL

3490
02:19:40,840 --> 02:19:41,840
FUNCTION, INFECTION, ALL OF

3491
02:19:41,840 --> 02:19:46,200
THESE CAUSES, BECAUSE WE KNOW

3492
02:19:46,200 --> 02:19:49,120
THE BASICS BUT WE DON'T KNOW --

3493
02:19:49,120 --> 02:19:50,680
WE HAVE -- THERE ARE MORE CAUSES

3494
02:19:50,680 --> 02:19:51,960
IN THOSE CATEGORIES THAT WE

3495
02:19:51,960 --> 02:19:55,360
DON'T KNOW ABOUT, BETTER

3496
02:19:55,360 --> 02:19:55,880
EVALUATIONS.

3497
02:19:55,880 --> 02:20:00,560
>>WELL, HALF OF THE
BIRTHS IN

3498
02:20:00,560 --> 02:20:02,520
THIS COUNTRY HAVE INSURANCE

3499
02:20:02,520 --> 02:20:05,600
RELATED TO STATE MEDICAID

3500
02:20:05,600 --> 02:20:06,880
PROGRAMS, SO THAT MIGHT BE ONE,

3501
02:20:06,880 --> 02:20:12,360
YOU KNOW, WAY TO APPROACH THIS

3502
02:20:12,360 --> 02:20:14,440
TO SAY, YOU KNOW, I TOTALLY

3503
02:20:14,440 --> 02:20:17,040
AGREE, IT'S UNFAIR TO HAVE THE

3504
02:20:17,040 --> 02:20:20,160
PARENTS BE RESPONSIBLE FOR THE

3505
02:20:20,160 --> 02:20:24,480
FINANCIAL COSTS THAT WOULD BE

3506
02:20:24,480 --> 02:20:25,920
INCURRED BY HAVING AN AUTOPSY,

3507
02:20:25,920 --> 02:20:27,120
FOR EXAMPLE.

3508
02:20:27,120 --> 02:20:29,960
SO MAYBE ONE WAY IS TO WORK WITH

3509
02:20:29,960 --> 02:20:32,760
CMS TO SAY WHAT CAN THEY DO,

3510
02:20:32,760 --> 02:20:36,720
WHAT CAN THEY COVER THAT WOULD

3511
02:20:36,720 --> 02:20:38,240
THEN AT LEAST BE ABLE TO PROVIDE

3512
02:20:38,240 --> 02:20:40,320
SOME INFORMATION FOR EVERY WOMAN

3513
02:20:40,320 --> 02:20:46,320
WHO HAS INSURANCE THROUGH

3514
02:20:46,320 --> 02:20:47,080
MEDICAID.

3515
02:20:47,080 --> 02:20:47,400
GLL GOT IT.

3516
02:20:47,400 --> 02:20:50,160
>>GOT IT.

3517
02:20:50,160 --> 02:20:51,480
WITH THAT, THANK YOU,

3518
02:20:51,480 --> 02:20:51,760
DR. BIANCHI.

3519
02:20:51,760 --> 02:20:56,720
I WANTED TO THANK ALL OF YOU FOR

3520
02:20:56,720 --> 02:20:58,760
YOUR ENGAGEMENT TODAY ON BEHALF

3521
02:20:58,760 --> 02:21:00,840
OF DR. REDDY AND MYSELF,

3522
02:21:00,840 --> 02:21:02,720
PARTICULARLY THANKS TO

3523
02:21:02,720 --> 02:21:04,000
DR. NATASHA WILLIAMS AND

3524
02:21:04,000 --> 02:21:05,960
DR. MONICA LONGO FOR HAVING

3525
02:21:05,960 --> 02:21:08,080
ARRANGED THE SESSIONS, OUR

3526
02:21:08,080 --> 02:21:10,240
SPEAKERS, DR. ELIZABETH GREGORY

3527
02:21:10,240 --> 02:21:14,640
AND DR. SARAH.

3528
02:21:14,640 --> 02:21:15,720
VERY IMPORTANT PRESENTATIONS TO

3529
02:21:15,720 --> 02:21:19,120
SET THE STAGE FOR WHAT'S TO

3530
02:21:19,120 --> 02:21:19,760
COME.

3531
02:21:19,760 --> 02:21:23,680
SO WITH THAT, I WOULD LOVE FOR

3532
02:21:23,680 --> 02:21:26,320
OUR WORKING GROUP MEMBERS AND

3533
02:21:26,320 --> 02:21:28,920
THE NICHD STAFF TO STAY ON, SO

3534
02:21:28,920 --> 02:21:31,520
THAT WE CAN WRAP UP THIS

3535
02:21:31,520 --> 02:21:32,520
DISCUSSION.

3536
02:21:32,520 --> 02:21:33,080
 AND COMPLETE OUR

3537
02:21:33,080 --> 02:21:40,640
PLANNING FOR THE NEXT MEETING.

3538
02:21:40,640 --> 02:21:47,600
>>THANK YOU, DR. JAIN.

3539
02:21:47,600 --> 02:21:49,920
 -- ABOUT THE ITEMS THAT WE NEED

3540
02:21:49,920 --> 02:22:00,400
TO ACHIEVE THE ACTION ITEMS,

3541
02:22:04,880 --> 02:22:06,880
SO -- ANA, DO YOU STILL WANT TO

3542
02:22:06,880 --> 02:22:07,640
SAY SOMETHING?

3543
02:22:07,640 --> 02:22:13,120
I'M SORRY.

3544
02:22:13,120 --> 02:22:14,560
>>I JUST WANT TO THANK
ALL OF

3545
02:22:14,560 --> 02:22:16,600
YOU FOR YOUR TIME ON THIS, AND I

3546
02:22:16,600 --> 02:22:21,520
KNOW YOU LOOK AT IT FROM A VERY

3547
02:22:21,520 --> 02:22:23,000
DIFFERENT LENS BUT NOT

3548
02:22:23,000 --> 02:22:23,440
EXPERIENCING A LOSS.

3549
02:22:23,440 --> 02:22:24,600
I JUST WANT TO SAY WHEN YOU LOSE

3550
02:22:24,600 --> 02:22:26,000
A BABY AND THEN YOU START TO BE

3551
02:22:26,000 --> 02:22:27,440
TALKED TO ABOUT DATA AND

3552
02:22:27,440 --> 02:22:29,480
RESEARCH, IT REALLY -- IT'S HARD

3553
02:22:29,480 --> 02:22:31,480
TO HEAR AND IT'S HARD FOR YOU TO

3554
02:22:31,480 --> 02:22:34,280
EVEN, YOU KNOW, COMPREHEND, YOUR

3555
02:22:34,280 --> 02:22:36,560
BABY JUST DIED, AND THEY WANT TO

3556
02:22:36,560 --> 02:22:37,760
GO THROUGH AUTOPSY AND THINGS

3557
02:22:37,760 --> 02:22:39,920
LIKE THAT, AND I THINK IT'S VERY

3558
02:22:39,920 --> 02:22:40,720
IMPORTANT, THE PERSON DOING IT

3559
02:22:40,720 --> 02:22:42,240
IS NOT INVOLVED IN THE LOSS,

3560
02:22:42,240 --> 02:22:44,760
ESPECIALLY IF IT WENT A WAY THAT

3561
02:22:44,760 --> 02:22:46,320
YOU DON'T FEEL LIKE THEY DID THE

3562
02:22:46,320 --> 02:22:47,280
BEST CARE.

3563
02:22:47,280 --> 02:22:49,160
THAT'S WHAT HAPPENED IN MY

3564
02:22:49,160 --> 02:22:49,600
SITUATION.

3565
02:22:49,600 --> 02:22:51,720
THEY CAME TO US AFTER I WAS

3566
02:22:51,720 --> 02:22:54,480
HOLDING MY DEAD BABY AND TELLING

3567
02:22:54,480 --> 02:22:56,160
ME, NOW DO YOU WANT AN AUTOPSY

3568
02:22:56,160 --> 02:22:58,120
AND YOU MAY NOT FIND ANYTHING

3569
02:22:58,120 --> 02:23:00,840
FROM THIS AND A LOT OF TIMES

3570
02:23:00,840 --> 02:23:01,920
PARENTS ARE UNHAPPY THAT THEY

3571
02:23:01,920 --> 02:23:04,120
DID IT BECAUSE, YOU KNOW, YOUR

3572
02:23:04,120 --> 02:23:06,440
BABY WILL LOOK DIFFERENT AFTER

3573
02:23:06,440 --> 02:23:08,280
AND YOU MIGHT HAVE TO PAY FOR IT

3574
02:23:08,280 --> 02:23:10,920
AND IT WAS VERY DISCOURAGED.

3575
02:23:10,920 --> 02:23:12,680
SO OF COURSE WE SAID NO.

3576
02:23:12,680 --> 02:23:16,960
AND THAT'S A REGRET I HAVE IN MY

3577
02:23:16,960 --> 02:23:17,280
LIFE.

3578
02:23:17,280 --> 02:23:20,120
AND THEN LATER, THANK GOD I DID

3579
02:23:20,120 --> 02:23:21,560
GET DR. CLE NENT MENTKOWSKI TO

3580
02:23:21,560 --> 02:23:23,280
DO RESEARCH SIX YEARS LATER, SO

3581
02:23:23,280 --> 02:23:24,800
I DO KNOW IT'S POSSIBLE TO FIND

3582
02:23:24,800 --> 02:23:26,440
ANSWERS LATER BUT IT ALSO IS

3583
02:23:26,440 --> 02:23:27,960
VERY SAD THAT IT TOOK ME SIX

3584
02:23:27,960 --> 02:23:29,840
YEARS OF THIS HEAVY GRIEF OF NOT

3585
02:23:29,840 --> 02:23:32,240
KNOWING CAUSE AND THINKING IT

3586
02:23:32,240 --> 02:23:33,560
MIGHT HAVE BEEN SOMETHING I DID.

3587
02:23:33,560 --> 02:23:35,640
AND I DON'T WANT ANYONE ELSE TO

3588
02:23:35,640 --> 02:23:37,960
LIVE WITH THAT.

3589
02:23:37,960 --> 02:23:40,880
SO IF THERE'S ANY WAY YOU CAN

3590
02:23:40,880 --> 02:23:42,320
STANDARDIZE -- LIKE MAKE IT

3591
02:23:42,320 --> 02:23:44,520
EQUITABLE, MAKE SURE THAT EVERY

3592
02:23:44,520 --> 02:23:45,920
PARENT GET JUST A FORM, IT COULD

3593
02:23:45,920 --> 02:23:49,000
BE WRITTEN OUT IN A WAY THAT

3594
02:23:49,000 --> 02:23:49,960
SAYS WE KNOW WHAT YOU'RE GOING

3595
02:23:49,960 --> 02:23:51,080
THROUGH AND THIS IS HORRIBLE BUT

3596
02:23:51,080 --> 02:23:52,280
YOU'RE GOING TO WANT TO KNOW,

3597
02:23:52,280 --> 02:23:54,440
YOU'RE GOING TO WANT THE ANSWER.

3598
02:23:54,440 --> 02:23:59,200
SO IF WE CAN HELP WITH ANY OF

3599
02:23:59,200 --> 02:24:00,280
THAT, WE KNOW THE PLACE THEY'RE

3600
02:24:00,280 --> 02:24:01,480
AT WHEN THEY'RE BEING ASKED

3601
02:24:01,480 --> 02:24:03,560
THESE QUESTIONS, AND DOCTORS

3602
02:24:03,560 --> 02:24:07,720
DON'T ALWAYS HAVE OUR BACK.

3603
02:24:07,720 --> 02:24:09,160
AND WE HAVE TO DO THAT FOR

3604
02:24:09,160 --> 02:24:09,800
EVERYBODY, NOT JUST THE PEOPLE

3605
02:24:09,800 --> 02:24:11,000
WHO CAN AFFORD IT.

3606
02:24:11,000 --> 02:24:12,080
AND THANKFULLY I HAD THE

3607
02:24:12,080 --> 02:24:14,480
RESOURCE AND I WAS CONNECTED

3608
02:24:14,480 --> 02:24:16,040
WITH DR. CLEMENT RECENTLY SO I

3609
02:24:16,040 --> 02:24:17,560
HAD THE RIGHT PERSON TO HELP ME

3610
02:24:17,560 --> 02:24:19,400
AND MY FAMILY, AND NOW I HAVE A

3611
02:24:19,400 --> 02:24:20,520
VOICE AND ADVOCATE FOR OTHERS,

3612
02:24:20,520 --> 02:24:22,080
SO THEY CAN PREVENT A LOSS AND

3613
02:24:22,080 --> 02:24:24,040
WE DO KNOW THERE'S VERY MANY

3614
02:24:24,040 --> 02:24:25,520
SIMILARITIES IN ALL OUR STORIES,

3615
02:24:25,520 --> 02:24:27,120
AND SO WE WANT TO HELP IN ANY

3616
02:24:27,120 --> 02:24:28,640
WAY YOU GUYS CAN USE US, SO

3617
02:24:28,640 --> 02:24:30,000
PLEASE LET US KNOW.

3618
02:24:30,000 --> 02:24:32,600
>>THANK YOU SO MUCH, ANA.

3619
02:24:32,600 --> 02:24:38,040
I KNOW HOW HARD THIS IS.

3620
02:24:38,040 --> 02:24:39,640
AND I ALSO WANT YOU TO KNOW THAT

3621
02:24:39,640 --> 02:24:40,600
THE CONGRESSIONAL MANDATE THAT

3622
02:24:40,600 --> 02:24:42,800
WAS DELIVERED TO THIS WORKING

3623
02:24:42,800 --> 02:24:48,560
GROUP INCLUDES LOOKING AT

3624
02:24:48,560 --> 02:24:49,480
PSYCHOLOGICAL IMPACT OF

3625
02:24:49,480 --> 02:24:50,680
STILLBIRTH AND TREATMENT OF

3626
02:24:50,680 --> 02:24:52,840
MOTHERS IN PARTICULAR FOLLOWING

3627
02:24:52,840 --> 02:24:57,760
STILLBIRTH.

3628
02:24:57,760 --> 02:24:59,640
SO THIS IS AN IMPORTANT AREA WE

3629
02:24:59,640 --> 02:25:00,760
WOULD LIKE TO CONTINUE TO

3630
02:25:00,760 --> 02:25:02,160
EXPLORE, AS MUCH AS WE WANT TO

3631
02:25:02,160 --> 02:25:03,160
UNDERSTAND WHY CERTAIN BABIES

3632
02:25:03,160 --> 02:25:08,200
DON'T MAKE TO FULL TERM, LIVE

3633
02:25:08,200 --> 02:25:10,480
BIRTH, CREATING THIS LIFELONG

3634
02:25:10,480 --> 02:25:11,600
REGRET IN THE FAMILY.

3635
02:25:11,600 --> 02:25:14,240
I, FOR ONE, CAN TELL YOU, ANA,

3636
02:25:14,240 --> 02:25:19,160
THAT WE HAD TWO CHILDREN, AS A

3637
02:25:19,160 --> 02:25:24,200
NEONAY TOLL NEONATOLOGIST, I DOW

3638
02:25:24,200 --> 02:25:27,120
WE DIDN'T EVEN THINK ABOUT THESE

3639
02:25:27,120 --> 02:25:29,680
TYPE OF TRAGIC EVENTS AT THAT

3640
02:25:29,680 --> 02:25:30,120
TIME.

3641
02:25:30,120 --> 02:25:32,560
WE WERE JUST YOUNG, WE WERE

3642
02:25:32,560 --> 02:25:33,160
BUSY.

3643
02:25:33,160 --> 02:25:35,720
BUT WE NOW HAVE TWO

3644
02:25:35,720 --> 02:25:36,920
GRANDCHILDREN, AND I CAN'T TELL

3645
02:25:36,920 --> 02:25:41,280
YOU HOW MANY SLEEPLESS NIGHTS I

3646
02:25:41,280 --> 02:25:48,040
HAVE SPENT LISTENING TO OUR

3647
02:25:48,040 --> 02:25:50,680
DAUGHTERS, WHEN THEY WENT

3648
02:25:50,680 --> 02:25:54,000
THROUGH HIGH RISK HIGH RISK PRE,

3649
02:25:54,000 --> 02:25:55,200
WAKING UP IN THE MIDDLE OF THE

3650
02:25:55,200 --> 02:25:56,200
NIGHT HOPING THAT EVERYTHING IS

3651
02:25:56,200 --> 02:25:58,480
OKAY.

3652
02:25:58,480 --> 02:26:01,520
SO I JUST WANT YOU TO KNOW THAT

3653
02:26:01,520 --> 02:26:03,640
WE ARE WITH YOU, THAT THIS IS

3654
02:26:03,640 --> 02:26:05,040
NOT SOMETHING THAT WE'RE

3655
02:26:05,040 --> 02:26:07,000
TREATING JUST AS SCIENTISTS.

3656
02:26:07,000 --> 02:26:10,760
WE HAVE REAL SKIN IN THIS, AND

3657
02:26:10,760 --> 02:26:13,600
WE'RE EQUALLY CONCERNED ABOUT

3658
02:26:13,600 --> 02:26:16,520
THIS, GIVEN THAT OUR FUTURE

3659
02:26:16,520 --> 02:26:19,240
GENERATION AND GRANDCHILDREN ARE

3660
02:26:19,240 --> 02:26:19,800
AT STAKE.

3661
02:26:19,800 --> 00:00:00,000
SO THANK YOU SO MUCH.