§280g–13. National congenital heart disease research, surveillance, and awareness
(a) In general
The Secretary shall, as appropriate-
(1) enhance and expand research and data collection efforts related to congenital heart disease, including to study and track the epidemiology of congenital heart disease to understand health outcomes for individuals with congenital heart disease across all ages;
(2) conduct activities to improve public awareness of, and education related to, congenital heart disease, including care of individuals with such disease; and
(3) award grants to entities to undertake the activities described in this section.
(b) Activities
(1) In general
The Secretary shall carry out activities, including, as appropriate, through a national cohort study and a nationally-representative, population-based surveillance system, to improve the understanding of the epidemiology of congenital heart disease in all age groups, with particular attention to-
(A) the incidence and prevalence of congenital heart disease in the United States;
(B) causation and risk factors associated with, and natural history of, congenital heart disease;
(C) health care utilization by individuals with congenital heart disease;
(D) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease; and
(E) evidence-based practices related to care and treatment for individuals with congenital heart disease.
(2) Permissible considerations
In carrying out the activities under this section, the Secretary may, as appropriate-
(A) collect data on the health outcomes, including behavioral and mental health outcomes, of a diverse population of individuals of all ages with congenital heart disease, such that analysis of the outcomes will inform evidence-based practices for individuals with congenital heart disease; and
(B) consider health disparities among individuals with congenital heart disease, which may include the consideration of prenatal exposures.
(c) Awareness campaign
The Secretary may carry out awareness and educational activities related to congenital heart disease in individuals of all ages, which may include information for patients, family members, and health care providers, on topics such as the prevalence of such disease, the effect of such disease on individuals of all ages, and the importance of long-term, specialized care for individuals with such disease.
(d) Public access
The Secretary shall ensure that, subject to subsection (e), information collected under this section is made available, as appropriate, to the public, including researchers.
(e) Patient privacy
The Secretary shall ensure that the data and information collected under this section are made available in a manner that, at a minimum, protects personal privacy to the extent required by applicable Federal and State law.
(f) Report and strategy
(1) Report
Not later than 2 years after November 21, 2024, the Secretary shall issue a report to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate including the following:
(A) A description of past and present activities of the Department of Health and Human Services to increase awareness and knowledge of the public with respect to congenital heart disease, including efforts to address the lifelong needs of congenital heart disease patients.
(B) An assessment of past and present activities of the Department of Health and Human Services to increase education and training of health care providers with respect to congenital heart disease, including efforts to address the lifelong needs of congenital heart disease patients.
(C) A description of the current workforce capacity in the United States of health care providers who treat adult patients living with congenital heart disease.
(2) Strategy
(A) Development; submission to Congress
Not later than 1 year after submitting the report required by paragraph (1), the Secretary shall develop and submit to Congress a strategy for improving efforts to increase awareness and knowledge of the public and education and training of health care providers with respect to congenital heart disease. Such strategy shall include findings and recommendations to-
(i) address any public awareness and research gaps and opportunities related to the lifelong needs of congenital heart disease patients, including long-term health outcomes, quality of life, mental health, and health care utilization;
(ii) address any shortages in the current workforce of health care providers who treat adult patients living with congenital heart disease, which may include strategies to enhance fellowship training programs or other continuing education programs; and
(iii) foster collaboration and dissemination of information across Federal agencies, health care providers, researchers, and patient organizations.
(B) Consultation
In developing the strategy under subparagraph (A), the Secretary shall, as appropriate, consult with qualified stakeholder groups, including patient organizations, health care professionals, research entities, health insurance providers, accrediting organizations, and relevant Federal agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Health Resources and Services Administration.
(g) Eligibility for grants
To be eligible to receive a grant under subsection (a)(3), an entity shall-
(1) be a public or private nonprofit entity with specialized experience in congenital heart disease; and
(2) submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require.
(h) Authorization of appropriations
To carry out this section, there are authorized to be appropriated $10,000,000 for each of fiscal years 2025 through 2029.
(July 1, 1944, ch. 373, title III, §399V–2, as added
Editorial Notes
Amendments
2024-Subsecs. (f), (g).
Subsec. (h).
2018-