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’); 
‘‘(2) plan and implement a public outreach and 
education campaign regarding CHD across the life-
span; and 
‘‘(3) award grants to eligible entities to under-
take the activities described in subsections (b) and 
(c). 
‘‘(b) NATIONAL
CONGENITAL
HEART
DISEASE 
STUDY.— 
‘‘(1) IN GENERAL.—The Director of the Cen-
ters for Disease Control and Prevention shall plan, 
develop, implement, and submit one or more reports 
to the Congress on a study to improve under-
standing of the epidemiology of CHD across the life-
span, from birth to adulthood, with particular inter-
est in the following: 
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‘‘(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 avail-
able— 
‘‘(A) for purposes of CHD research, sub-
ject to appropriate protections of personal pri-
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vacy, including protections required by para-
graph (4); and 
‘‘(B) to the public, subject to paragraph 
(4) and with appropriate exceptions for protec-
tion of personal privacy. 
‘‘(4) PATIENT PRIVACY.—The Secretary shall 
ensure that the study under this subsection is car-
ried out in a manner that complies with the require-
ments applicable to a covered entity under the regu-
lations promulgated pursuant to section 264(c) of 
the Health Insurance Portability and Accountability 
Act of 1996. 
‘‘(c) CONGENITAL
HEART
DISEASE
AWARENESS 
CAMPAIGN.— 
‘‘(1) IN GENERAL.—The Director of the Cen-
ters for Disease Control and Prevention shall estab-
lish and implement an awareness, outreach, and 
education campaign regarding CHD across the life-
span. 
‘‘(2) PERMISSIBLE ACTIVITIES.—The campaign 
under this subsection may— 
‘‘(A) utilize collaborations or partnerships 
with other agencies, health care professionals, 
and patient advocacy organizations that spe-
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cialize in the needs of individuals with CHD; 
and 
‘‘(B) include the use of print, film, and 
electronic materials distributed via television, 
radio, Internet, or other commercial marketing 
venues. 
‘‘(d) ELIGIBILITY FOR GRANTS.—To be eligible to re-
ceive a grant under subsection (a)(3), 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. 
‘‘(e) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $4,000,000 for each of fiscal years 2017 through 
2021.’’. 
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: 
‘‘SEC. 425. CONGENITAL HEART DISEASE. 
‘‘(a) IN GENERAL.—The Director of the Institute 
may expand, intensify, and coordinate research and re-
lated activities of the Institute with respect to congenital 
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heart disease, 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 
congenital 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 in-
dividuals with congenital heart disease. 
‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.— 
The Director of the Institute may coordinate research ef-
forts related to congenital heart disease among multiple 
research institutions and may develop research networks. 
‘‘(c) MINORITY
AND
MEDICALLY
UNDERSERVED 
COMMUNITIES.—In carrying out the activities described in 
this section, the Director of the Institute shall consider 
the application of such research and other activities to mi-
nority and medically underserved communities. 
‘‘(d) REPORT FROM NIH.—Not later than 1 year 
after the date of enactment of the Congenital Heart Fu-
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