Congenital heart defects are present at birth, but they shape health for a lifetime. CDC works both to find their causes and to improve the health of people living with them — and that starts with data.
Image from CDC's page on heart defects tracking and research.
Why tracking and research go together
- Tracking: birth defects tracking programs collect information on babies born with heart defects, showing where and when defects occur and whom they affect. CDC supports several such tracking programs, and their data guide prevention and referral to care.
- Research: studying those data lets scientists find factors that raise or lower the risk of heart defects.
Following people as they grow up
Since 2012, CDC and partners have been building the systems and methods to collect information on children, teens and adults with heart defects — to understand their survival, health care use, reproductive health and long-term outcomes. Current projects:
| Project | What it does |
|---|---|
| CHD STAR2 (Congenital Heart Defects Surveillance across Time and Regions, phase 2) | In 2024 CDC funded six sites — Duke University, Emory University, Indiana University, the New York State Department of Health, the University of Texas Health Science Center at Houston and the University of Utah — through 2029 to study outcomes among children, teens and adults with heart defects. Emory also received separate funding to improve tracking with machine learning |
| CH STRONG (Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG) | From 2016 to 2019, surveyed young adults with heart defects about their health, education and quality of life. Project updates |
| CH STRONG-KIDS | Funded at three sites in 2022, it surveys parents and caregivers of a population-based sample of children and teens with heart defects about quality of life, health care use, social and school experiences, barriers to care, and the move from a pediatric to an adult cardiologist |
| Focus groups | Launched in 2023 with people with heart defects who haven't had cardiac care for 3 or more years, to learn why they stopped, what gets in the way, how the move to adult care went, and what would encourage regular care |
Looking for causes
CDC funds two large studies of what raises or lowers the risk of having a baby with a birth defect, including heart defects: the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS). Read about their findings.
Sources
Based on "Tracking and Research," Heart Defects, Centers for Disease Control and Prevention; a work of the United States government in the public domain.
Licence: CC0 1.0 (public domain) · Adapted from www.cdc.gov
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