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Birth Defects: For Researchers and Health Care Practitioners

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Resources for Researchers

  • The DBSVB leads the Trans-NIH Structural Birth Defects Working Group (SBDWG), which includes extramural program officials from NIH components whose missions include research into structural birth defects, with the ultimate goal of facilitating advances in our understanding of the etiology, mechanisms, epidemiology, prevention, and treatment of structural birth defects.
  • The DBSVB coordinates the Birth Defects Initiative, which promotes collaboration among NIH-funded investigators whose research spans basic, translational, and clinical approaches to understanding the developmental biology and genetics of structural birth defects.
  • The Association of University Centers on Disabilities (AUCD) External Web Site Policy is an organization that supports and promotes a national network of university-based interdisciplinary programs, including the NICHD-funded Intellectual and Developmental Disabilities (IDD) Research Centers. The AUCD provides technical assistance, communication support, advocacy, and other assistance to researchers and professionals involved in the organization.
  • The Birth Defects Research Group, supported by the Division of Intramural Population Health Research (DIPHR), is a multicenter, multidisciplinary group led by the NICHD to investigate the etiology of birth defects, particularly neural tube defects.
  • FRAXA Research Foundation External Web Site Policy is an organization that supports researchers investigating causes, treatments, and preventative methods for Fragile X syndrome. Its website includes information about research grants and research resources.
  • The National Birth Defects Prevention Network External Web Site Policy is a volunteer organization that maintains a national network of state and population-based birth defects programs. Members include public health officials, epidemiologists, academics, parents, and others committed to understanding factors that may lead to birth defects, identifying strategies for reducing birth defects, and working to prevent potential secondary disabilities.
  • The Eunice Kennedy Shriver Intellectual and Developmental Disabilities (IDD) Research Centers, supported by the IDD Branch, supports researchers whose goals are to advance understanding of a variety of conditions and topics related to IDDs.
  • The NICHD funds three Fragile X Syndrome Research Centers. These centers are geared toward stimulating multidisciplinary, multi-institutional research and translating basic research findings into clinical practice.
  • The March of Dimes External Web Site Policy funds research on prematurity, birth defects, and infant health. Its website contains information on research grants and training on these topics.
  • The NICHD's Maternal-Fetal Surgery Network conducts research on maternal-fetal surgeries for myelomeningocele.
  • The Jackson Laboratory External Web Site Policy maintains and distributes animal models for research on neural tube defects.
  • The Muscular Dystrophy Association External Web Site Policy provides a variety of resources for researchers, including research grant programs, conferences, training opportunities, and others.
  • The NICHD is one of the agencies supporting the National Database for Autism Research, which includes relevant data at all levels of biological and behavioral organization (i.e., molecules, genes, neural tissues, social and environmental interactions) and for many data types (e.g., text, numeric, image, time series).
  • The National Down Syndrome Society External Web Site Policy provides a variety of offerings to researchers, including grants, conferences, and research resources.
  • The NICHD Brain and Tissue Bank for Developmental Disorders External Web Site Policy systematically collects, stores, and distributes brain and other tissues for research dedicated to the improved understanding, care, and treatment of individuals with developmental disabilities, including ASDs.
  • The NICHD supports the Newborn Screening Translational Research Network External Web Site Policy. The network is developing a system for clinics and other screening providers to collect long-term follow-up and outcome data for use in research on phenylketonuria and other disorders.
  • The Spina Bifida Association External Web Site Policy offers research grants and awards for investigators whose work is relevant to this disorder.

Resources for Health Care Providers

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.​​

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