Tracking and Research

Key points

  • CDC is working to identify causes of heart defects and improve the health of those living with these conditions.
  • Examining 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.123456

In 2019, CDC funded six sites and one additional site in 2020 for the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) project. Sites include the 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 and the University of Iowa. CDC will fund these sites until 2024 to look at children, teens, and adults with heart defects over a 10-year time period.

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

In 2016, CDC launched a survey of young adults with heart defects.7 CH STRONG looked at the health, education, and quality of life for people living with heart defects. 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

  • Health care use
  • Barriers to receiving health care
  • Quality of life
  • Social and educational outcomes
  • Transition of care from childhood to adulthood
  • 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). 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. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.