H. R. 1222 

One Hundred Fifteenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Wednesday, 

the third day of January, two thousand and eighteen 

An Act 

To amend the Public Health Service Act to coordinate Federal congenital heart 

disease research efforts and to improve public education and awareness of congenital heart disease, and for other purposes. 

Be it enacted by the Senate and House of Representatives of 

the United States of America in Congress assembled, 

SECTION 1. SHORT TITLE. 

This Act may be cited as the ‘‘Congenital Heart Futures 

Reauthorization Act of 2017’’. 

SEC. 2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, SURVEILLANCE, AND AWARENESS. 

Section 399V–2 of the Public Health Service Act (42 U.S.C. 

280g–13) is amended to read as follows: 

‘‘SEC. 399V–2. 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 
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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) 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. 

‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—To carry out this 

section, there are authorized to be appropriated $10,000,000 for 

each of fiscal years 2020 through 2024.’’. 

SEC. 3. REPORT. 

Not later than 3 years after the date of enactment of the 

Congenital Heart Futures Reauthorization Act of 2017, the Secretary of Health and Human Services shall submit to the Committee 

on Health, Education, Labor, and Pensions of the Senate and the 

Committee on Energy and Commerce of the House of Representatives a report summarizing any activities carried out pursuant 

to section 399V–2 of the Public Health Service Act (as amended 

by section 2), including planned activities, and a summary of any 

research findings and ongoing research efforts, gaps, and areas 
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of greatest need within the Department of Health and Human 

Services regarding congenital heart disease in patients of all ages. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.