Congenital Anomalies Resources

Links to websites of groups that study or provide information about congenital anomalies.

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 Congenital Anomalies Branch (DBCAB) led the NIH-wide Structural Birth Defects Working Group, which included extramural program officials from NIH components whose missions included 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.
  • DBCAB also 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 congenital anomalies.
  • The Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (EKS-IDDRCs), 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.
  • The Birth Defects Research Group, supported by the Division of Population Health Research, is a multicenter, multidisciplinary group led by NICHD to investigate the etiology of congenital anomalies, particularly neural tube defects.
  • FRAXA Research Foundation external link is an organization that supports researchers investigating causes, treatments, and preventative methods for Fragile X syndrome. Its website includes information about research grants external link and research resources external link.
  • The National Birth Defects Prevention Network external link is a volunteer organization that maintains a national network of state and population-based congenital anomaly programs. Members include public health officials, epidemiologists, academics, parents, and others committed to understanding factors that may lead to congenital anomalies, identifying strategies for reducing congenital anomalies, and working to prevent potential secondary disabilities.
  • The March of Dimes external link funds research on prematurity, congenital anomalies, and infant health. Its website contains information on research grants and training on these topics. The March of Dimes resources for health care professionals external link include patient resources, medical guidance and references, and educational opportunities relevant to congenital anomalies.
  • The Jackson Laboratory external link maintains and distributes animal models for research on neural tube defects.
  • The Muscular Dystrophy Association external link 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 external link (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 external link 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 congenital anomalies, including links to data, research information, and scientific articles on congenital anomalies as well as patient resources.
  • The Association of University Centers on Disabilities (AUCD) external link is an organization that supports and promotes a national network of university-based interdisciplinary programs, including the NICHD-funded EKS-IDDRCs. The AUCD provides technical assistance, communication support, advocacy, and other assistance to researchers and professionals involved in the organization.
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