§280g–13 National Congenital Heart Disease Research, Surveillance, and Awareness

Summary

The Health and Human Services Secretary must expand and improve research, tracking, and public education about congenital heart disease. The Secretary will fund grants to groups to do this. Work should cover people of all ages and use things like a national study and a population tracking system to find how common the disease is, what causes it and the risks, how people use health care, who is affected (age, race, sex, family history), and what care works best. The Secretary may also collect information on behavior and mental health and look at health differences, including possible prenatal exposures. The Secretary can run awareness and education campaigns for patients, families, and health care providers about how common the disease is, its lifetime effects, and the need for long-term specialized care. Collected data must be shared with the public and researchers when appropriate, while protecting personal privacy under Federal and State law. A report must go to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee not later than 2 years after November 21, 2024 (by November 21, 2026). That report must describe HHS’s past and current public awareness and provider training work and the current workforce caring for adults with congenital heart disease. Within 1 year after that report, the Secretary must send Congress a strategy with findings and recommendations to fill gaps in awareness and research, address workforce shortages, and improve coordination. The Secretary should consult patient groups, health professionals, researchers, insurers, accrediting groups, and agencies like the CDC, NIH, and HRSA. Grants are open to public or private nonprofit groups with special experience in congenital heart disease that apply. Up to $10,000,000 is authorized each year for fiscal years 2025 through 2029.