Congenital Heart Defects (CHDs) Tracking and Research

Baby with stethescope

Accurately tracking congenital heart defects (CHDs) is the first step in preventing them and reducing their effect. Information from tracking systems provides a basis for research. Below is a summary of CDC’s CHD tracking and research work.

Importance of Tracking and Research

  • Tracking: Birth defects tracking systems identify babies born with birth defects, including CHDs, and collect information to learn more about these conditions. Many states have birth defects tracking systems, which are vital to help us find out where and when birth defects occur, and who they affect.
  • Research: We base our research on what we learn from tracking. By analyzing the collected data, we can identify factors that increase or decrease the risk of birth defects and identify community or environmental concerns or other factors, such as use of specific medications, which need more study.

CDC’s Role

CDC works to identify causes of heart defects, find opportunities to prevent them, and improve the health of those living with these conditions. Understanding the potential causes of heart defects can lead to recommendations, policies, and services to help prevent them. Researching health issues and needs across the lifespan can help us plan for services and ensure individuals born with these conditions are getting the care they need.

CDC’s tracking and research includes the following activities:

The Metropolitan Atlanta Congenital Defects Program

The Metropolitan Atlanta Congenital Defects Program (MACDP) is a population-based tracking system for birth defects, including CHDs, 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 a CHD) who live in a specific area. This is done so that researchers can get a complete picture of what is happening within the population.

Learn more about MACDP »

State Birth Defects Tracking Systems

Forty-one states have some level of birth defects tracking programs. CDC funds 14 states to track major birth defects, including CHDs, 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

CDC supports and works with the National Birth Defects Prevention Network (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 network assesses the effects of birth defects on children, families, and the healthcare system. It also identifies factors that might increase or decrease the risk for having a baby with birth defects. This information is used to develop strategies to prevent birth defects and to assist families and their providers in preventing other disabilities among children with birth defects.

Learn more about NBDPN »external icon

Surveillance of Congenital Heart Defects Across the Lifespan

There are a number of state-based programs tracking CHDs among newborns and young children, but no population-based tracking system exists to look at the growing population of older children and adults with heart defects.

In 2012, CDC received funding to enhance and expand public health tracking of CHDs among adolescents and adults. From 2012 – 2015, CDC worked on a pilot project with Emory University in Atlanta, Georgia, the New York State Department of Health, and the Massachusetts Department of Public Health to develop population-based tracking of adolescents and adults with CHDs.

In 2015, a new four-year project was started to expand upon the three-site pilot project that tracked adolescents and adults with CHDs. Five sites—University of Colorado in Denver, Duke University in Durham, North Carolina, Emory University in Atlanta, Georgia, the New York State Department of Health, and the University of Utah in Salt Lake City—are working to better understand the survival, healthcare use, and longer term outcomes of individuals born with CHDs across the lifespan. Understanding health issues and needs at all ages is vital to improving the lives of individuals with these conditions.

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)

CDC, in collaboration with March of Dimes, the University of Arizona College of Medicine, and the Arkansas Center for Birth Defects Research and Prevention, launched a survey of adults with CHDs from 2016 to 2019. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) assessed health, social and educational status, and quality of life for individuals living with CHDs.

Learn more about CH STRONG »external icon

Centers for Birth Defects Research and Prevention Studies

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)external icon 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 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.

CDC researchers and collaborators have reported important findings about some pregnancy exposures that increase the risk for CHDs:

  • Obesity―Women who are obese before pregnancy have been shown to have an increased risk of having a pregnancy affected by a CHD. [Read articleexternal icon]
  • Diabetes―Women with diabetes diagnosed before pregnancy have been shown to be more at risk of having a child with a number of birth defects, including CHDs. [Read summaryexternal icon]
  • Smoking―Women who smoked anytime during the month before pregnancy through the end of the first trimester have been shown to be more likely to have a pregnancy affected by a CHD. [Read summaryexternal icon]

Reducing obesity, providing better control of diabetes, and preventing tobacco exposure are all actions we can take today that hold promise for preventing CHDs. These actions also might improve the health of those affected with CHDs throughout their lives.

Learn more about the Centers for Birth Defects Research and Prevention »

Future Opportunities to Understand and Prevent CHDs

Following are some of the future activities for tracking and research of CHDs:

  • Continue to expand public health tracking of CHDs beyond the first year of life, to include children and adults
  • Continue to investigate causes of CHDs
  • Continue to collect information on health outcomes across the lifespan
  • Learn more about health service use among those with a CHD, including cost and quality of care
  • Identify barriers in accessing care or in transitioning to adult care
  • Increase awareness of the public health impact of CHDs

These activities are aimed at preventing CHDs, when possible, and improving the lives of those living with CHDs. [Read articleexternal icon]

Highlighted Articles

Children with Heart Conditions Have Special Healthcare Needs
A study from the Centers for Disease Control and Prevention (CDC) found that 1 in 77 U.S. children reportedly had a current heart condition in 2016.
(Published: September 27, 2018)

Study Finds Infant Cardiac Deaths Have Declined in States that Mandate Screening for Critical Congenital Heart Disease
The Journal of the American Medical Association has published a study reporting a more than 33% decline in infant deaths from critical congenital heart disease (CCHD) in eight states that mandated screening for CCHD using pulse oximetry compared to states without screening policies
(Published: December 5, 2017)

Estimating the Number of People with Congenital Heart Defects Living in the United States
The journal Circulation has published a study that estimates about 1 million children and 1.4 million adults in the United States were living with a congenital heart defect (CHD) in 2010.
(Published: July 5, 2016)

Newborn Screening for Critical Congenital Heart Defects Now Common Throughout the United States
In a report in the journal, Pediatrics, CDC researchers and partners reviewed the overall effects of critical CHD screening, including costs and health outcomes (cost-effectiveness) of performing screenings, challenges at the state level for screening, and implementing screening in special settings
(Published: April 15, 2016)

Use of Special Education Services among Children with CHDs
CDC study findings in Pediatrics show that children with congenital heart defects (CHDs) received special education services more often than children without birth defects.
(Published: August 17, 2015)

Estimated Number of Infants Detected and Missed by Critical Congenital Heart Defect Screening
The journal Pediatrics has published a study estimating the number of infants with critical congenital heart defects(critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry.
(Published: May 11, 2015)

Diabetes before pregnancy and congenital heart defects
In a study published in the American Journal of Preventative Medicine, women with diabetes before pregnancy were about 4 times more likely to have a pregnancy affected by a congenital heart defect compared to women without diabetes.
(Published: February 2015)

Long Term Outcomes in Children with Congenital Heart Disease
In a study published in the Journal of Pediatrics, CDC researchers found that children with CHD are more likely to report worse health overall, to need more healthcare services, and to have other health conditions, compared to children without CHD.
(Published: January 2015)

Infant Death Due to Heart Defects
Congenital heart defects are conditions present at birth that can affect the way the heart works. They can cause lifelong disability or death. They are the most common type of birth defect, affecting nearly 40,000 births in the United States each year.
(Published: July 9, 2014)

Living with a Heart Defect
Learn about congenital heart defects and about Ken, an adult living with this condition.
(Published: February 12, 2018)