[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1222 Referred in Senate (RFS)]
<DOC>
115th CONGRESS
2d Session
H. R. 1222
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
February 27, 2018
Received; read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
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 SURVEILLANCE 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 RESEARCH,
SURVEILLANCE, AND AWARENESS.
``(a) In General.--The Secretary shall--
``(1) enhance and expand research and surveillance
infrastructure to study and track the epidemiology of
congenital heart disease (in this section referred to as
`CHD'); and
``(2) award grants to eligible entities to undertake the
activities described in this section.
``(b) National Congenital Heart Disease Study.--
``(1) In general.--The Secretary shall plan, develop,
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 birth to adulthood, with particular
interest in the following:
``(A) Health care utilization of those affected 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, 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 ensure 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 receive 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 information 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:
``SEC. 425. CONGENITAL HEART DISEASE.
``(a) In General.--The Director of the Institute may expand,
intensify, and coordinate research and related activities of the
Institute with respect to congenital heart disease, which may include
congenital heart disease research with respect to--
``(1) causation of congenital heart disease, including
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 retrospective
analysis to identify effective treatments and outcomes for
individuals with congenital heart disease; and
``(5) identifying barriers to lifelong care for individuals
with congenital heart disease.
``(b) Coordination of Research Activities.--The Director of the
Institute may coordinate research efforts 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 minority and medically underserved communities.
``(d) Report From NIH.--Not later than 1 year after the date of the
enactment of the Congenital Heart Futures Reauthorization Act of 2017,
the Director of NIH, acting through the Director of the Institute,
shall provide a report to Congress--
``(1) outlining the ongoing research efforts of the
National Institutes of Health regarding congenital heart
disease; and
``(2) identifying--
``(A) future plans for research regarding
congenital heart disease; and
``(B) the areas of greatest need for such
research.''.
Passed the House of Representatives February 26, 2018.
Attest:
KAREN L. HAAS,
Clerk.