42 U.S.C. § 280g–13 — National congenital heart disease research, surveillance, and awareness

(a) In general: The Secretary must, as appropriate, (1) grow research and data collection on congenital heart disease, tracking its epidemiology and outcomes across all ages; (2) improve public awareness and education about the disease and the care of people who have it; and (3) award grants for the activities described in this section. (b) Activities: (1) The Secretary must carry out activities -- including, as appropriate, a national cohort study and a nationally-representative, population-based surveillance system -- to better understand the disease's epidemiology in all age groups, with particular attention to (A) how common it is in the United States; (B) its causes, risk factors, and natural course; (C) how much health care patients with it use; (D) demographic factors like age, race, ethnicity, sex, and family history; and (E) evidence-based practices for its care and treatment. (2) The Secretary may also, as appropriate, (A) collect data on health outcomes -- including behavioral and mental health outcomes -- of a diverse population of patients of all ages, to inform evidence-based practices; and (B) consider health disparities among patients, which may include prenatal exposures. (c) Awareness campaign: The Secretary may run awareness and education activities about the disease for people of all ages, which may include information for patients, families, and providers on the disease's prevalence, its effects, and the need for long-term specialized care. (d) Public access: Subject to subsection (e), the Secretary must make information collected under this section available, as appropriate, to the public, including researchers. (e) Patient privacy: The Secretary must make sure the data and information collected are shared in a way that protects personal privacy at least as much as applicable federal and State law require. (f) Report and strategy: (1) By 2 years after November 21, 2024, the Secretary must report to the House Energy and Commerce Committee and the Senate Health, Education, Labor, and Pensions Committee, describing (A) HHS's past and present activities to raise public awareness and knowledge of the disease, including efforts addressing patients' lifelong needs; (B) HHS's past and present activities to educate and train health care providers about the disease, including efforts addressing patients' lifelong needs; and (C) the current U.S. workforce of providers who treat adults living with the disease. (2)(A) Within 1 year after submitting that report, the Secretary must develop and submit to Congress a strategy for improving public awareness and provider education and training on the disease, with findings and recommendations to (i) address gaps and opportunities in public awareness and research related to patients' lifelong needs, including long-term outcomes, quality of life, mental health, and health care use; (ii) address shortages in the workforce of providers who treat affected adults, possibly through better fellowship or continuing education programs; and (iii) foster collaboration and information-sharing among federal agencies, providers, researchers, and patient organizations. (B) In developing the strategy, the Secretary must, as appropriate, consult stakeholder groups, including patient organizations, health professionals, research entities, insurers, accrediting organizations, and relevant federal agencies such as the CDC, NIH, and HRSA. (g) Eligibility for grants: To get a grant under subsection (a)(3), an entity must (1) be a public or private nonprofit with specialized experience in congenital heart disease; and (2) apply to the Secretary as required. (h) Authorization of appropriations: Congress may spend $10,000,000 each year from 2025 through 2029.