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 con-
genital 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, SURVEIL-
LANCE, 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 under-
stand 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 atten-
tion 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 con-
genital heart disease; 
‘‘(D) demographic factors associated with congenital 
heart disease, such as age, race, ethnicity, sex, and family
H. R. 1222—2 
history of individuals who are diagnosed with the disease; 
and 
‘‘(E) evidence-based practices related to care and treat-
ment for individuals with congenital heart disease. 
‘‘(2) PERMISSIBLE
CONSIDERATIONS.—In carrying out the 
activities under this section, the Secretary may, as appro-
priate— 
‘‘(A) collect data on the health outcomes, including 
behavioral and mental health outcomes, of a diverse popu-
lation of individuals of all ages with congenital heart dis-
ease, such that analysis of the outcomes will inform evi-
dence-based practices for individuals with congenital heart 
disease; and 
‘‘(B) consider health disparities among individuals with 
congenital heart disease, which may include the consider-
ation 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, special-
ized 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 Sec-
retary 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 Sec-
retary 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 Representa-
tives 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
H. R. 1222—3 
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.