Anencephaly and spina bifida X-linked
Other Names for this Disease
- X-linked anencephaly/spina bifida
On this page
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare 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.
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.