Research
Update on Progress of the Stillbirth Research Agenda...
Dec 3, 2002
The National Institute of Health is pleased to announce that 3 million dollars has been allocated for stillbirth research in 2003. To receive information on the initiative and application process contact NIH. Research on the Scope and Causes of Stillbirth in the United States.
June 27, 2001
The National SHARE Office received this update on June 20, 2001 from the NIH committee (Catherine Spong, MD, Gary Hankins, MD, and Marian Willinger, PhD) -
- Seminars in Perinatology will publish manuscripts from the meeting, dedicating the December 2001 issue to Stillbirth. We have 15 manuscripts pledged including:
- Setting a research Agenda for Stillbirth (overview of the topic, focus & definitions)
- Vital statistics as a data source
- The National Fetal Death File
- Certificate of Birth Resulting in Stillbirth for each stillbirth - the Arizona Story
- Methodologic Barriers to Population Based Research on Stillbirths-Overcoming Data Gaps
- The contribution of stillbirths to US perinatal mortailty rate, 1995-98
- Epidemiology of stillbirth
- Maternal Medical Disease: Risk of Antepartum Fetal Death
- Inherited and acquired thrombophilias and stillbirth
- Genetics/metabolic disorders and stillbirth
- Stillbirth: infectious etiologies
- Umbilical Cord Accidents: Human Studies
- Stillbirth: Tissue Findingsa with Environmental and Genetic Links
- Neuropathology Associated with Stillbirth
- Sudden fetal and infant deaths: shared characteristics and distinctive features
- ACOG (the American College of Obstetricians and Gynecologists) has agreed to survey the Fellows for their practice patterns in stillbirth - a questionnaire has been developed and should be in the field shortly.
- An article has been written for Contemporary Ob/Gyn, the most-widely read Ob/Gyn magazine that is sent to all Obstetrician/Gynecologists as well as a number of other health professionals. This will get the word out to the practicing clinicians very quickly.
- An initiative to stimulate research into stillbirth has been submitted for the FY 2003 planning process at NICHD. In the Center for Research for Mothers and Children, this was the number one initiative sent forth (of a total of nine from 5 branches). Getting the support of the other Branches to agree that this is such an important topic to receive top priority is very exciting.
- Summaries of the focus groups have been sent to all participants and interested parties.
- ACOG has been approached for this to be a Topic at the 2002 Annual Clinical Meeting.
The committee is pleased with the progress of work on the issues and are looking forward to the continuation these efforts.
Report on Stillbirth Workshop...
April, 2001
As you may know, SHARE's Executive Director was a participant in the recent stillbirth workshop at the National Institute of Health. The following is Cathi's report on the meeting. Continuing updates will be posted as things progress.
The National Institute of Health (NIH) convened a workshop on Monday, March 26, 2001 with professional experts in the field setting a national agenda for stillbirth research. In the United States in 1998, stillbirths of babies 20 weeks gestation or more occurred at a rate of at least 7 deaths per every 1,000 live births, for a total of more tan 26,500 stillbirths. Typically, 50% of these stillbirths have an undetermined cause of death. Currently there is no significant funding on going for research into the etiology and/or pathogenesis of stillbirth. In addition, every year about 900,000 pregnancies which do not reach 20 weeks of gestation, end in miscarriage or fetal death.
Nationally, no data are collected on cause of death, prior to delivery, although 40 states do use a code for age and cause of death. Fetal mortality rates vary by race, ethnic origin, marital status and age of the mother, with the youngest and oldest mothers experiencing the greatest risk of fetal mortality. The overall fetal mortality rate was 16.5 losses per 1,000 women in their childbearing years in the 1998 data.
The agenda formulated by this workshop include the following:
Improvement of record keeping and reporting in each state
- The Center for Disease Control (CDC) is in the process of revising their fetal death certificate to be more sensitive to bereaved families' needs.
- Improved education of how to complete the forms for the physicians and health information services. Also the draft of an informational form that would accompany the death certificate document for parents to complete was introduced by the CDC.
- The committee devised a protocol that will be given to the American College of Obstetricians and Gynecologists (ACOG).
- Improved education of medical students/professionals on the sensitive ways to present the choice of autopsy.
- Better education of medical providers and families experiencing stillbirth losses about the benefits of autopsy.
Areas that were explored at the meeting were:
- Medical conditions
- Placental and fetal pathology
- Umbilical cord accidents
- Genetic/metabolic causes
- Infectious causes
- Blood clotting disorders
- Unexplained stillbirths
- Relationship of stillbirths to deaths in the early newborn period
- Press releases were sent out to all the major metropolitan medical writers and to the participants of the workshop.
- Continuous updates of information on this web page of the National SHARE website and in both the SHARE newsletter for bereaved parents, Sharing, and the newsletter for SHARE group facilitators, Caring Notes.
- Shared available resources with group.
- Ways to collaborate with bereaved parents and all the perinatal loss groups were addressed.
