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.
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.
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
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.
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.
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.
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 NICHD's
Maternal-Fetal Surgery Network conducts research on maternal-fetal surgeries for myelomeningocele.
maintains and distributes animal models for research on neural tube defects.
Muscular Dystrophy Association
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).
National Down Syndrome Society
provides a variety of offerings to researchers, including grants, conferences, and research resources.
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 ASDs.
- The 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.
Spina Bifida Association
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.