Continued Study of Spina Bifida

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.

Since folic acid fortification in the mid-1990s, population-based birth defects surveillance programs have been able to document a decline in the birth prevalence of spina bifida in the United States. In addition, with the advances in medical treatment, more infants born with spina bifida are surviving and thriving than in past years. However, information on the population-based prevalence of children and adolescents with spina bifida is still limited.

Over the past few years, CDC, along with state birth defects surveillance programs, has been conducting an evaluation to look at the number of children and adolescents with spina bifida in ten regions of the United States, as well as their survival rates. This project will provide information that might be useful in deliberations on the public health impact of spina bifida beyond infancy.

Most recent estimates indicate about 1,500 babies (1 out of every 2,800) are born with spina bifida each year in the United States.

The Metropolitan Atlanta Congenital Defects Program (MACDP)

MACDP is a population-based surveillance system for birth defects, including spina bifida, among fetuses, infants, and children born to residents of metropolitan Atlanta. It was the nation's first population-based surveillance system to actively track birth defects.

State Birth Defects Tracking Systems

CDC funds 14 states to track major birth defects, including spina bifida, and uses the data to help direct birth defects prevention activities and refer children affected by birth defects to needed services.

National Birth Defects Prevention Network (NBDPN)

The NBDPN is a group of individuals involved in birth defects surveillance, research, and prevention. The Network assesses the impact of birth defects, including spina bifida, on children, families, and the healthcare system; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in the prevention of secondary disabilities.

National Birth Defects Prevention Study (NBDPS)

The National Birth Defects Prevention Study (NBDPS) is one of the largest U.S. studies looking at risk factors and potential causes of birth defects, including spina bifida.

Because many types of birth defects occur at such low rates, it is difficult to conduct studies that include enough children with specific birth defects. NBDPS has 9 study sites, and gives us a unique opportunity to create a study group large enough to determine what environmental, genetic, and behavioral factors cause or contribute to specific birth defects.