Research

Estimating the Prevalence 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.¹

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.

Learn more about MACDP »

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.

Read about the work taking place in each state »

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.

Learn more about NBDPN »

Understanding Risk Factors and Causes

CDC wants to find ways to prevent births affected by spina bifida. To do that, we need to know what causes it. Research gives us important clues about things that might raise or lower the risk of having a baby affected by spina bifida. Those clues help us develop sound public health policies for prevention.

CDC works with many other researchers to study risk factors that can increase the chance of having a baby affected by spina bifida. Research has found:

• Taking folic acid before getting pregnant and in early pregnancy lowers the risk of having a pregnancy affected by spina bifida.²
• There has been a 27% decline in pregnancies affected by neural tube defects (spina bifida and anencephaly) since the United States began fortifying enriched grains with folic acid. ²
• Babies born to Hispanic mothers are at an increased risk for spina bifida.³
• Maternal obesity is significantly associated with spina bifida (doubles the risk).⁴

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.

Learn more about the National Birth Defects Prevention Study (NBDPS) »

Living with Spina Bifida

Spina bifida is a complex, disabling condition that has a tremendous impact on individuals and families, from difficulty accessing care, to incurring high health care costs associated with frequent surgeries and hospitalizations. CDC research and programs improve the quality of life and encourage full participation at every age for those with spina bifida.

Spina Bifida Multi-site Study
The goal of the National Spina Bifida Patient Registry is to improve the quality of care provided to people living with spina bifida, and to build a foundation for future research. Data gathered from children and adults who attend spina bifida clinics across the country will document care received, and outcomes of that care. CDC is the only organization in the United States designing the infrastructure and conducting the multi-site clinical research to build a better road map for living with spina bifida.

Spina Bifida End-Stage Renal Disease Project
The Spina Bifida End-Stage Renal Disease Project is the first to look at the connection between spina bifida and kidney failure. Using data from the United States Renal Data System, which includes medical claims and transplant records, CDC researchers will determine the characteristics of people with spina bifida who have end-stage renal disease. CDC researchers will determine whether people with spina bifida are more or less likely to experience health problems and die from kidney failure than people who are not affected by spina bifida. This project is part of CDC’s work focusing on adults with spina bifida.

Spina Bifida in Young Children in Arizona and Utah
This project will include all children with spina bifida who were born in Arizona and Utah, not just those who visit a spina bifida clinic, and will help CDC determine if similar research methods can be used for other rare conditions. CDC researchers will analyze information on children 3 through 6 years of age living in Arizona and Utah. This project will focus on child development and school readiness.

Arkansas Study of Spina Bifida among Young People
Young people with spina bifida who live into adulthood might experience depression, obesity, social isolation, and lack of independence. The objective of this survey is to determine how frequently these conditions occur and factors associated with them. A detailed survey was administered to individuals 12 through 31 years of age with spina bifida living in Arkansas, and their parents. The survey for this study included questions about physical factors (such as lesion level, shunt complications, incontinence, and mobility) and environmental factors (such as school experiences and parent-child interactions). The study also looked at sexuality, tobacco and alcohol use, and illicit drug use.

Learn more about living with spina bifida »

References

1. Parker SE, Mai CT, Canfield MA, et al; for the National Birth Defects Prevention Network. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006. Birth Defects Res A Clin Mol Teratol. 2010;88:1008-16.
2. CDC. Spina Bifida and Anencephaly Before and After Folic Acid Mandate --- United States, 1995--1996 and 1999—2000. MMWR. May 7, 2004 / 53(17);362-365.
3. CDC. Racial/ethnic differences in the birth prevalence of spina bifida - United States, 1995-2005. MMWR. 2009 Jan 9;57(53):1409-13.
4. Stothard KJ, Tennant PW, Bell R, Rankin J. Maternal overweight and obesity and the risk of congenital anomalies: a systematic review and meta-analysis JAMA 2009;301(6):636-50.