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Research & Tracking

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.

National Birth Defects Prevention Network (NBDPN)

CDC supports and collaborates with the NBDPN. The NBDPN is a group of over 225 individuals working at the national, state, and local levels, who are involved in tracking, researching, and preventing birth defects. The NBDPN serves as a forum for exchanging ideas about tracking and researching birth defects and for providing technical support for state and local programs. Established in 1997, the NBDPN assesses the effect of birth defects on children, families, and the healthcare system. The network also identifies risk factors for birth defects. This information can be used to develop strategies to prevent birth defects and to assist families and their providers in preventing other disabilities in children with birth defects.
[Learn more about NBDPN]

Boy on Dad's shoulders

Centers for Birth Defects Research and Prevention

CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on two large studies of birth defects: the National Birth Defects Prevention Study (1997-2011) and the Birth Defects Study to Evaluate Pregnancy Exposures (began in 2014). These studies work to identify factors that increase or decrease the risk for having a baby with birth defects (like spina bifida) and to answer questions about exposures during pregnancy. Population-based studies like these look at the occurrence of conditions across a wide group of people, which is important to make sure that study results are applicable to all people in the United States.
[Learn more about the Centers for Birth Defects Research and Prevention]

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. This 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.

National Health and Nutrition Examination Survey (NHANES)

NHANES is a survey designed to look at the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations, including the collection of blood samples.

CDC uses information from this survey to look at the amount of folic acid that people consume from food and dietary supplements. Getting enough folic at least one month before getting pregnant and during early pregnancy lowers the risk of having a baby with serious birth defects of the brain and spine, such as spina bifida.
[Read more about the National Health and Nutrition Examination Survey (NHANES)]

Healthcare Cost and Utilization Project (HCUP)

The Healthcare Cost and Utilization Project (HCUP) is a large source of hospital care data sponsored by the Agency for Healthcare Research and Quality (AHRQ). Beginning in 1988, HCUP has collected information about cost and quality of health services, health treatments, and access to healthcare from 47 states in the United States.

The Kids' Inpatient Database (KID) is a part of the Healthcare Cost and Utilization Project (HCUP). The KID tracks hospital stays for patients that are less than 21 years.
[Read more about the Healthcare Cost and Utilization Project (HCUP)]

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.

The Metropolitan Atlanta Congenital Defects Program (MACDP)

The Metropolitan Atlanta Congenital Defects Program (MACDP) is a population-based tracking system for birth defects, including spina bifida, among children born to residents of metropolitan Atlanta. Established in 1967, MACDP is the nation's first population-based system to actively track birth defects. A population-based tracking program allows researchers to look at all of the people with a certain condition (like spina bifida) who live in a specific area. This is done so that researchers can get a complete picture of what is happening within the population.
[Read more about MACDP]

State-Based Tracking Systems

Forty-one states have some level of birth defects tracking programs. CDC funds 14 states to track major birth defects, including spina bifida, using population-based methods. State systems use 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)

CDC supports and collaborates with the NBDPN. The NBDPN is a group of over 225 individuals working at the national, state, and local levels, who are involved in tracking, researching, and preventing birth defects. The NBDPN serves as a forum for exchanging ideas about tracking and researching birth defects and for providing technical support for state and local programs. Established in 1997, the NBDPN assesses the effect of birth defects on children, families, and the healthcare system. The network also identifies risk factors for birth defects. This information can be used to develop strategies to prevent birth defects and to assist families and their providers in preventing other disabilities in children with birth defects.
[Learn more about NBDPN]

International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR)

The ICBDSR brings together birth defects programs from around the world with the aim of conducting worldwide tracking and research to prevent birth defects and to improve the lives of people born with these conditions. CDC supports and collaborates with the ICBDSR as a way to gain knowledge and expertise on birth defects globally and to further our domestic goals and those of the international community.

Environmental Public Health Tracking (EPHT)

Environmental public health tracking is the ongoing collection, integration, analysis, interpretation, and dissemination of data on environmental hazards, exposures to those hazards, and health effects that may be related to the exposures.

CDC funds 24 state and local health departments to develop local tracking networks and to provide data to the CDC’s Tracking Network. Part of the data given to CDC includes 12 birth defects. The Tracking Network provides the prevalence of these defects and publishes updated data tables every year. Currently, CDC’s Tracking Network has birth defects data for California, Colorado, Connecticut, Florida, Kansas, Maine, Massachusetts, Missouri, New Hampshire, New Jersey, New Mexico, New York State, New York City , Utah, Vermont, and Wisconsin.
[Read about birth defects and the environment]

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