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 2,500) 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 the five central counties 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 15 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 the largest U.S. study 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

CDC is committed to helping people with spina bifida live life to its fullest potential. We focus on improving physical and mental health, increasing independence, and increasing social participation for people with spina bifida throughout their lives.

The Progression of Spina Bifida in Children

This project will help us learn more about what life is like for people growing up with spina bifida and better understand the needs of children with spina bifida and their families.

Spina Bifida Clinical Care Network

This national network supports research and helps improve the health of people who have spina bifida. Through this network, we are creating a National Spina Bifida Patient Registry and a Spina Bifida Electronic Medical Record.

Researching Bowel and Bladder Issues

A project is underway to determine what can be done without surgery to improve continence in children affected by spina bifida. Through this work we will explore how continence can be maximized by improving strategies currently used in spina bifida clinics and other medical settings that care for children with spina bifida.

Understanding the Medical Costs of Spina Bifida

This work allows us to learn why people of all ages affected by spina bifida go to the hospital or to see the doctor as well as what kinds of medicine and home care they may utilize. Through this knowledge, we can predict what interventions may be helpful to prevent medical problems in the future so that the lives of those affected by spina bifida will be healthier and their participation in life will not be hindered by preventable health problems.

 

Learn more about living with spina bifida »

 

 

References

1. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, et al. National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Res Part A Clin Mol Teratol. 2006;76(11):747–56.
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. Waller DK, Shaw GM, Rasmussen SA, Hobbs CA, Canfield MA, Siega-Riz A-M, et al. Prepregnancy obesity as a risk factor for structural birth defects. Arch Pediatr Adolesc Med. 2007;161(8):745–50.