Birth Defects Resources

Links to websites of groups that study or provide information about birth defects.

For NICHD information on specific conditions, see the A to Z topic list. Condition-specific resources are also available through the topics on specific conditions.

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

  • NICHD's Developmental Biology and Structural Variation Branch (DBSVB) leads the Trans-NIH Structural Birth Defects Working Group, 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 Eunice Kennedy Shriver Intellectual and Developmental Disabilities (IDD) Research Centers, supported by the Intellectual and Developmental Disabilities Branch, support researchers whose goals are to advance understanding of a variety of conditions and topics related to IDDs.
  • 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.
  • NICHD's Maternal-Fetal Surgery Network conducts research on maternal-fetal surgeries for myelomeningocele.
  • NICHD supports the Newborn Screening Translational Research Network. 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 Birth Defects Research Group, supported by the Division of Intramural Population Health Research, is a multicenter, multidisciplinary group led by NICHD to investigate the etiology of birth defects, particularly neural tube defects.
  • FRAXA Research Foundation 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 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 March of Dimes funds research on prematurity, birth defects, and infant health. Its website contains information on research grants and training on these topics. The March of Dimes resources for health care professionals include printable patient resources, medical guidance and references, and educational opportunities relevant to birth defects.
  • The Jackson Laboratory maintains and distributes animal models for research on neural tube defects.
  • The Muscular Dystrophy Association provides a variety of resources for researchers, including research grant programs, conferences, training opportunities, and others.
  • The Down Syndrome Consortium is a public–private collaboration that provides a forum for the exchange of information on biomedical and biobehavioral research on the syndrome. Visit About the Consortium to learn more about the Consortium and its members.
  • The University of Maryland Brain and Tissue Bank (formerly the NICHD Brain and Tissue Bank for Developmental Disorders) 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 autism spectrum disorders.
  • The Spina Bifida Association offers research grants and awards for investigators whose work is relevant to this disorder.
  • CDC's Birth Defects webpage provides information for health care providers and researchers related to birth defects, including links to data, research information, and scientific articles on birth defects as well as patient resources.
  • The Association of University Centers on Disabilities (AUCD)  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.

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


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