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Estimating the Prevalence of Spina Bifida

Boy on Dad's shoulders

Through population-based birth defects surveillance programs, CDC tracks the number of pregnancies affected by spina bifida in the United States. This way, we can find out if the number is rising, dropping, or staying the same. We can also compare the birth prevalence relative to where people live and by other factors. This information can help us look for risk factors and causes.

National Spina Bifida Patient Registry
CDC manages the National Spina Bifida Patient Registry. The Registry develops and updates standards of care for people living with spina bifida. This information is then shared with healthcare providers across the country. Data gathered in the Registry comes from children and adults who attend spina bifida clinics. These data document the care they receive, and the outcomes of that care. CDC is the only organization in the United States conducting this broad multi-site clinic research to help people living with spina bifida.

Spina Bifida End-Stage Renal Disease Project
This project looks at the connection between spina bifida and kidney failure (end-stage renal disease). CDC researchers are determining whether people with spina bifida are more or less likely to experience health problems and die from end-stage renal disease than people who are not affected by spina bifida. This study also looks at the medical and personal characteristics of people with spina bifida and end stage renal disease.

Urologic Protocol for Young Children
Children with spina bifida often have problems urinating, which can lead to kidney damage. CDC has worked with experts from across the country to develop a medical protocol that will safely and effectively monitor how well the bladder and kidneys are working in newborns and young children with spina bifida. Correctly monitoring the bladder and kidneys, with medical treatment as needed, may eliminate some or all kidney damage. See our map of the National Spina Bifida Patient Registry for the sites participating in the protocol.