    [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

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    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:
    ---------------------------------------------------------------------------

    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.