Congenital Heart Defects (CHDs) Tracking and Research
CDC is working to identify causes of heart defects and improve the health of those living with these conditions. Researching health issues and needs across the lifespan can help ensure people born with heart defects are getting needed care.
Why is Tracking and Research Important?
- Tracking: Birth defects tracking programs identify babies born with birth defects, including heart defects, to learn more about these conditions. Birth defects tracking programs enable scientists to determine where and when birth defects occur.
- Research: By studying data from tracking programs, researchers can identify factors that increase or decrease the risk of heart defects.
How is CDC Tracking and Researching Heart defects?
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 program for birth defects, including heart defects, among children born to mothers in metropolitan Atlanta. A population-based tracking program enables scientists to look at all people with a certain condition (such as heart defects) who live in a specific area.
- State Birth Defects Tracking Systems
CDC funds 10 sites to track major birth defects, including heart defects, using population-based methods. State systems use the data to help connect children who have birth defects to needed services.
- Tracking Heart Defects Across the Lifespan
From 2012–2015, CDC conducted a project with Emory University, the New York State Department of Health, and the Massachusetts Department of Public Health to look at the number of children and teens living with heart defects, as well as adults living with these conditions. Scientists also looked at pregnancy-related health issues in women living with heart defects.
- In 2015, CDC launched a 4-year expansion project with five sites: University of Colorado in Denver, Duke University, Emory University, the New York State Department of Health, and the University of Utah in Salt Lake City. These programs are looking at information to estimate the number of people living with heart defects and better understand the survival, healthcare use, and longer-term outcomes of people living with heart defects.
- CDC funded six sites in 2019 and one additional site in 2020 for the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) project: University of Arizona, Duke University, Emory University, New York State Department of Health, South Carolina Department of Health and Environmental Control, and University of Utah in 2019 and University of Iowa in 2020. CDC will fund these sites until 2024 to look at children, adolescents, and adults with heart defects over a 10-year time period.
- Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG)
In 2016, CDC launched a survey of adults with heart defects. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) looked at the health, education, and quality of life for people living with heart defects. Read project updates from CH STRONG.
- Population-based Surveillance of Outcomes, Needs, and Well-being of Children and Adolescents with Congenital Heart Defects
- In 2022, CDC funded three sites for the Population-based Surveillance of Outcomes, Needs, and well-beinG of Children and Adolescents with Congenital Heart Defects project (CHSTRONG-KIDS). The objectives of CHSTRONG-KIDS are to identify a population-based sample of children and adolescents with congenital heart defects and survey parents and caregivers about their child’s healthcare utilization, barriers to care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
- Centers for Birth Defects Research and Prevention Studies
CDC funds two large studies, the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS), to identify factors that increase or decrease the risk for having a baby with a birth defect, including heart defects.
Where Can I Find the Latest CDC Research on Heart Defects?
For the latest scientific information from CDC, please visit our page with Key Findings and articles of interest.