Program seeks Council approval for an initiative entitled “The road to Prevention of Stillbirth”. According to annual national vital statistics, between 2016 and 2020 stillbirth (number of fetal deaths at 20 weeks or greater gestation) affected between 20,000 and 24,000 families each year. Among non-Hispanic Native Hawaiian or Other Pacific Islander and non-Hispanic Black women, stillbirth rates are more than twice the rate for non-Hispanic White women. Stillbirth rates in American Indian and Alaska Native communities are also considerably higher than the national average. Fetal mortality rates are significantly higher among mothers younger than 15 or older than 44. By jurisdiction, in recent years, the highest rates for fetal deaths have been in Alabama, Arkansas, Mississippi, and Washington, DC. The lowest rates were in Connecticut, Iowa, Massachusetts, New Mexico, and Texas. Despite this significant and persistent increased in stillbirths, they have remained largely unstudied, and, for at least half of all stillbirths, the cause is undetermined.
To address the burden of stillbirth on U.S. families, the fiscal year 2022 Consolidated Appropriations Act (P.L. 117-103) included funds and report language for HHS to establish a Task Force to examine: current barriers for collecting data on stillbirths throughout the United States; communities at higher risk of stillbirth; the psychological impact and treatment for mothers following stillbirth and known risk factors for stillbirth.
At the request of HHS, NICHD formed the Stillbirth WorkingGroup (WG) of Council, a subgroup of NICHD’s National Advisory Child Health and Human Development (NACHHD) Council, to take on this task. Crucially, the WG heard the perspectives of people with lived experience of stillbirth. The WG gathered information from a range of experts and representatives from the extramural scientific community, federal partners, associations, and advocacygroups to review the science and make recommendations to NICHD to identify gaps and research needs onstillbirth.
The overall recommendations by the working group were:
- To improve our data collection tools, essential to guide research.
- To address communities at high risk of stillbirth by developing research protocols and data on the scope and causes of stillbirths among varied populations with a diverse ethnic/racial makeup.
- To implement research designed to inform efforts on how to support families after stillbirth as well as the providers who care for those patients by improving their training.
- To improve the understanding of known risk factors and under-investigated areas to discover new risk factors and interactions.
The goal of this initiative is to support a transdisciplinary research agenda to elucidate the genotypic, phenotypic, and environmental underpinnings of the causes of stillbirth and to identify potential targets for intervention and prevention. The proposed program will also fill major gaps in our understanding of racial inequalities in stillbirth rates. The initiative could integrate datasources and biological samples from existing resources, and leverage NICHD clinical networks (MFMU, NRN, Global Network) as well as the Human Placenta Project.
The scope of this initiative would include:
- Discovery of new risk factors and interactions with stillbirth.
- Standardizing live placental evaluation by imaging techniques (for example MRI and Ultrasound) and pathology examination to delineate the mechanisms of how specific genetic and environmental risk factors interact and affect stillbirth.
- Identify mechanism(s) underlying racial disparities in stillbirth and aidin assessing the preventability of stillbirth in high-risk communities.
- Conduct implementation research to develop culturally sensitive interventions for families who have experienced stillbirth.
- Establish baseline normative data on pregnancy physiology that will aid in implementing best practices in care after stillbirth and in subsequent pregnancies.
- Develop new approaches for identifying women at increased risk of stillbirth (for example, using maternal blood samples to identify and measure markers of placental function, which offer the opportunity to identify women at risk of stillbirth).
- Identify indicators of health and disease to evaluate clinical interventions for the prevention of stillbirth. Such indicators may include,but should not be limited to, placental development and function, fetal movement, fetal growth, and others.
- Develop and implement approaches to enable optimal management for timing of delivery for women with risk factors for stillbirth.
This proposed concept aligns with the goals of NICHD’s Strategic Plan 2020, specifically for Theme1, Understanding the Molecular, Cellular, and Structural Basis of Developmentand Theme 3, Setting the Foundation for Healthy Pregnancies and Lifelong Wellness. This proposed concept aligns with PPB priorities by evaluating how pregnancy-related conditions contribute to stillbirth, preterm birth, and the long-term health of women and their children. It also aligns with PPB (and other Branches) represented in the Maternal Health Coordinating Committee’s priorities of improving neonatal and infant outcomes.
Program Contact
Monica Longo
Pregnancy & Perinatology Branch (PPB)
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