[United States Statutes at Large, Volume 132, 115th Congress, 2nd Session]
[From the U.S. Government Publishing Office, www.gpo.gov]


Public Law 115-342
115th Congress

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

[[Page 5041]]

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

[[Page 5042]]

of greatest need within the Department of Health and Human Services
regarding congenital heart disease in patients of all ages.

Approved December 21, 2018.

LEGISLATIVE HISTORY--H.R. 1222:
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HOUSE REPORTS: No. 115-329 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD, Vol. 164 (2018):
Feb. 26, considered and passed House.
Dec. 12, considered and passed Senate, amended.
Dec. 19, House concurred in Senate amendment.