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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Anencephaly and spina bifida X-linked


Other Names for this Disease
  • X-linked anencephaly/spina bifida
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Treatment


Clinical Trials & Research for this Disease

  • In 1994 doctors began trying out various methods for closing spina bifida defects while the baby is still in the mother's womb. Since that time, many improvements have been made in the procedure. It is still not known, however, whether it is better to operate on a baby with spina bifida before or after it is born. A research study called Management of Myelomeningocele Study (MOMS) is designed to answer that question. The National Institute of Child Health and Human Development (NICHD), a part of The National Institutes of Health (NIH), has funded this study to compare how babies who have prenatal surgery do compared to those who have postnatal surgery. MOMS is a research study designed to compare two approaches to the treatment of babies with spina bifida: surgery before birth (prenatal or fetal surgery) and surgery after birth (postnatal surgery). To learn more about this research study, visit the MOMS Web site.