Spina Bifida: For Researchers and Health Care Providers

Information about NICHD-supported research networks, studies, and projects related to spina bifida can be found at the following organizations:

  • Birth Defects Research Group: The Birth Defects Research Group is a multicenter, multidisciplinary group led by the NICHD to investigate the etiology of birth defects, particularly neural tube defects (NTDs). It is supported by the NICHD Division of Intramural Population Health Research (DIPHR). The collaborating institutions are the NICHD; the National Human Genome Research Institute; the Health Research Board of Ireland; and the Department of Biochemistry, Trinity College, Dublin.
  • Maternal–Fetal Surgery Network: The Maternal–Fetal Surgery Network, which consists of NICHD researchers working with colleagues at four institutions, was created to evaluate in utero surgery versus standard postnatal surgery to repair myelomeningocele, the most severe form of spina bifida. The network’s primary study, the Management of Myelomeningocele Study (MOMS), found better overall outcomes for infants with myelomeningocele who got surgery while in the womb, compared to those who received the surgery after birth. The network is now conducting a follow-up study, MOMS 2, to evaluate the outcome of prenatal surgery on children who are now 5 to 8 years of age. The NICHD Pregnancy and Perinatology (PP) Branch supports the Maternal–Fetal Surgery Network.

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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