Tracking and Research

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 »

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 congenital heart defects 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 congenital heart defects. Data analysis from this pilot project is ongoing.

In 2015, a new four-year project was started to expand upon the three-site pilot project that tracked adolescents and adults with congenital heart defects. 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—will work 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 (CHSTRONG)

CDC, in partnership with March of Dimes, has launched a survey of adults with congenital heart defects. The survey is called CH STRONG, Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. This survey will assess health, social and educational status, and quality of life for survivors of congenital heart defects. CDC, along with the University of Arizona College of Medicine and the Arkansas Center for Birth Defects Research and Prevention, plan to distribute the survey in fall 2016.

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) 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.

Recently, 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 article]
• 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 summary]
• 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 summary]

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 article]