Tracking and Research

Key points

  • CDC is working to identify causes of heart defects and improve the health of those living with these conditions.
  • Assessing health issues and needs across the lifespan can help ensure people born with heart defects are getting needed care.
Illustration of puzzle pieces coming together

Why it's important

Tracking: Birth defects tracking programs collect information about babies born with heart defects to learn more about these conditions. This information enables scientists to determine where and when birth defects occur and whom they affect.

Research: By studying data from tracking programs, researchers can identify factors that increase or decrease the risk of heart defects.

What CDC is doing

Birth defects tracking

CDC supports several specific birth defects tracking efforts to collect information on birth defects, including heart defects. Data collected through these programs inform prevention and referral to care activities.

Keep Reading: Birth Defects Tracking

Tracking heart defects across the lifespan

Since 2012, CDC and partners have been building the infrastructure and methods to collect information on children, teens, and adults living with heart defects. These efforts help us better understand survival, healthcare use, reproductive health, and longer-term outcomes of people living with these conditions.[[1, 2, 3, 4, 5, 6]]

In 2024, CDC funded six sites for a second phase of the Congenital Heart Defects Surveillance across Time And Regions project (CHD STAR2). Sites include the Duke University, Emory University, Indiana University, New York State Department of Health, the University of Texas Health Science Center at Houston, and the University of Utah. CDC will fund these sites until 2029 to continue examining outcomes among children, teens, and adults with heart defects.

In 2024, CDC also funded Emory University for a separate part of CHD STAR2 to improve ways to track heart defects through machine learning methods.

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

Between 2016-2019, the CDC-funded CH STRONG project surveyed young adults living with heart defects to learn more about their health, education, and quality of life.1 Read project updates from CH STRONG.

Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG of KIDS (CHSTRONG-KIDS)

In 2022, CDC funded three sites for the project CHSTRONG-KIDS. Researchers will identify a population-based sample of children and adolescents with congenital heart defects. Parents and caregivers will be surveyed on topics such as their child's...

  • Quality of life
  • Health care use
  • Social and educational experiences
  • Challenges in receiving health care, and
  • Experience transitioning from a pediatric cardiologist (heart doctor for children) to an adult cardiologist.

Focus groups among people living with congenital Heart Defects

In 2023, CDC launched a project to conduct focus groups among people living with heart defects who have not had cardiac care (health care for their heart) for 3 or more years. The objective of the focus groups will be to learn directly from people with heart defects about their health care use, challenges receiving cardiac care, reasons why they have stopped getting cardiac care, and experiences around the transition from pediatric to adult cardiac care. We will also ask for their ideas and suggestions on what would encourage people with heart defects to get regular cardiac care.

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). These studies identify factors that increase or decrease the risk for having a baby with a birth defect, including heart defects.

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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  1. Farr SL, Klewer SE, Nembhard WN, Alter C, Downing KF, Andrews JG, Collins RT, Glidewell J, Benavides A, Goudie A, Riehle-Colarusso T. Rationale and design of CH STRONG: congenital heart survey to recognize outcomes, needs, and well-beinG. American heart journal. 2020 Mar 1;221:106-13.
  • Glidewell J, Book W, Raskind‐Hood C, Hogue C, Dunn JE, Gurvitz M, Ozonoff A, McGarry C, Van Zutphen A, Lui G, Downing K. Population‐based surveillance of congenital heart defects among adolescents and adults: surveillance methodology. Birth defects research. 2018 Nov 15;110(19):1395-403.
  • Lui GK, McGarry C, Bhatt A, Book W, Riehle-Colarusso TJ, Dunn JE, Glidewell J, Gurvitz M, Hoffman T, Hogue CJ, Hsu D. Surveillance of congenital heart defects among adolescents at three US sites. The American journal of cardiology. 2019 Jul 1;124(1):137-43.
  • Gurvitz M, Dunn JE, Bhatt A, Book WM, Glidewell J, Hogue C, Lin AE, Lui G, McGarry C, Raskind-Hood C, Van Zutphen A. Characteristics of adults with congenital heart defects in the United States. Journal of the American College of Cardiology. 2020 Jul 14;76(2):175-82.
  • Raskind-Hood C, Saraf A, Riehle-Colarusso T, Glidewell J, Gurvitz M, Dunn JE, Lui GK, Van Zutphen A, McGarry C, Hogue CJ, Hoffman T. Assessing pregnancy, gestational complications, and co-morbidities in women with congenital heart defects (data from ICD-9-CM codes in 3 us surveillance sites). The American journal of cardiology. 2020 Mar 1;125(5):812-9.
  • Glidewell MJ, Farr SL, Book WM, Botto L, Li JS, Soim AS, Downing KF, Riehle-Colarusso T, D'Ottavio AA, Feldkamp ML, Khanna AD. Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five US surveillance sites, 2011-2013. American heart journal. 2021 Aug 1;238:100-8.
  • Khanna AD, Duca LM, Kay JD, Shore J, Kelly SL, Crume T. Prevalence of mental illness in adolescents and adults with congenital heart disease from the Colorado Congenital Heart Defect Surveillance System. The American journal of cardiology. 2019 Aug 15;124(4):618-26.