IB 
Union Calendar No. 239 
115TH CONGRESS 
1ST SESSION H. R. 1222 
[Report No. 115–329] 
To amend the Public Health Service Act to coordinate Federal congenital 
heart disease research efforts and to improve public education and aware-
ness of congenital heart disease, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 27, 2017 
Mr. BILIRAKIS (for himself and Mr. SCHIFF) introduced the following bill; 
which was referred to the Committee on Energy and Commerce 
SEPTEMBER 25, 2017 
Additional sponsors: Mr. ABRAHAM, Mr. SWALWELL of California, Mr. 
LOEBSACK, Mr. BOST, Mr. SOTO, Mr. POCAN, Mrs. MCMORRIS ROD-
GERS, Mrs. MURPHY of Florida, Mr. WEBSTER of Florida, Mr. MULLIN, 
Mr. EVANS, Mr. STIVERS, Mr. GUTHRIE, Mr. CONNOLLY, Ms. NORTON, 
Mr. NOLAN, Mr. FITZPATRICK, Mr. COLLINS
of New York, Ms. 
VELA´ZQUEZ, Ms. ROS-LEHTINEN, Mr. SESSIONS, Mr. GRIFFITH, Mr. 
ELLISON, Mr. MOULTON, Mr. CA´RDENAS, Mr. WALBERG, and Mr. MEE-
HAN 
SEPTEMBER 25, 2017 
Reported with an amendment, committed to the Committee of the Whole 
House on the State of the Union, and ordered to be printed 
[Strike out all after the enacting clause and insert the part printed in italic] 
[For text of introduced bill, see copy of bill as introduced on February 27, 2017] 
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A BILL 
To amend the Public Health Service Act to coordinate Fed-
eral congenital heart disease research efforts and to im-
prove public education and awareness of congenital heart 
disease, and for other purposes. 
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Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Congenital Heart Fu-
tures Reauthorization Act of 2017’’. 
SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEIL-
LANCE SYSTEM. 
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 RE-
SEARCH, SURVEILLANCE, AND AWARENESS. 
‘‘(a) IN GENERAL.—The Secretary shall— 
‘‘(1) enhance and expand research and surveil-
lance infrastructure to study and track the epidemi-
ology of congenital heart disease (in this section re-
ferred to as ‘CHD’); and 
‘‘(2) award grants to eligible entities to under-
take the activities described in this section. 
‘‘(b) 
NATIONAL
CONGENITAL
HEART
DISEASE 
STUDY.— 
‘‘(1) IN GENERAL.—The Secretary shall plan, de-
velop, implement, and submit one or more reports to 
the Congress on a study to improve understanding of 
the epidemiology of CHD across the lifespan, from 
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birth to adulthood, with particular interest in the fol-
lowing: 
‘‘(A) Health care utilization of those af-
fected by CHD. 
‘‘(B) Demographic factors associated with 
CHD, such as age, race, ethnicity, gender, and 
family history of individuals who are diagnosed 
with the disease. 
‘‘(C) Outcome measures, such that analysis 
of the outcome measures will allow derivation of 
evidence-based best practices and guidelines for 
CHD patients. 
‘‘(2) PERMISSIBLE CONSIDERATIONS.—The study 
under this subsection may— 
‘‘(A) gather data on the health outcomes of 
a diverse population of those affected by CHD; 
‘‘(B) consider health disparities among 
those affected by CHD, which may include the 
consideration of prenatal exposures; and 
‘‘(C) incorporate behavioral, emotional, and 
educational outcomes of those affected by CHD. 
‘‘(3) PUBLIC ACCESS.—Data generated from the 
study under this subsection shall be made available— 
‘‘(A) for purposes of CHD research, subject 
to appropriate protections of personal privacy, 
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including protections required by paragraph (4); 
and 
‘‘(B) to the public, subject to paragraph (4) 
and with appropriate exceptions for protection of 
personal privacy. 
‘‘(4) PATIENT PRIVACY.—The Secretary shall en-
sure that the study under this subsection is carried 
out in a manner that complies with the requirements 
applicable to a covered entity under the regulations 
promulgated pursuant to section 264(c) of the Health 
Insurance Portability and Accountability Act of 1996. 
‘‘(c) ELIGIBILITY FOR GRANTS.—To be eligible to re-
ceive a grant under subsection (a)(2), an entity shall— 
‘‘(1) be a public or private nonprofit entity with 
specialized experience in CHD; and 
‘‘(2) submit to the Secretary an application at 
such time, in such manner, and containing such in-
formation as the Secretary may require. 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To carry 
out this section, there is authorized to be appropriated 
$4,000,000 for each of fiscal years 2018 through 2022.’’. 
SEC. 3. CONGENITAL HEART DISEASE RESEARCH. 
Section 425 of the Public Health Service Act (42 
U.S.C. 285b–8) is amended to read as follows: 
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‘‘SEC. 425. CONGENITAL HEART DISEASE. 
‘‘(a) IN GENERAL.—The Director of the Institute may 
expand, intensify, and coordinate research and related ac-
tivities of the Institute with respect to congenital heart dis-
ease, which may include congenital heart disease research 
with respect to— 
‘‘(1) causation of congenital heart disease, in-
cluding genetic causes; 
‘‘(2) long-term outcomes in individuals with con-
genital heart disease, including infants, children, 
teenagers, adults, and elderly individuals; 
‘‘(3) diagnosis, treatment, and prevention; 
‘‘(4) studies using longitudinal data and retro-
spective analysis to identify effective treatments and 
outcomes for individuals with congenital heart dis-
ease; and 
‘‘(5) identifying barriers to lifelong care for indi-
viduals with congenital heart disease. 
‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.—The 
Director of the Institute may coordinate research efforts re-
lated to congenital heart disease among multiple research 
institutions and may develop research networks. 
‘‘(c) MINORITY AND MEDICALLY UNDERSERVED COM-
MUNITIES.—In carrying out the activities described in this 
section, the Director of the Institute shall consider the appli-
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Union Calendar No. 239 
115TH CONGRESS 
1ST SESSION 
H. R. 1222 
[Report No. 115–329] 
A BILL 
To amend the Public Health Service Act to coordi-
nate Federal congenital heart disease research ef-
forts and to improve public education and aware-
ness of congenital heart disease, and for other 
purposes. 
SEPTEMBER 25, 2017 
Reported with an amendment, committed to the Com-
mittee of the Whole House on the State of the Union, 
and ordered to be printed 
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