ongenital Heart Defects (CHDs) Tracking and

Research
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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 14 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 projectexternal icon 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 defectsexternal icon, as well
as adults living with these conditionsexternal icon. Scientists also
looked at pregnancy-related health issuesexternal icon 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
outcomesexternal icon 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 surveyexternal icon of adults with heart
defects. The Congenital Heart Survey To Recognize Outcomes, Needs,
and well-beinG (CH STRONGexternal icon) looked at the health,
education, and quality of life for people living with heart defects.
 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