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[115th Congress Public Law 342]
[From the U.S. Government Publishing Office]

[[Page 5039]]

          CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2017

[[Page 132 STAT. 5040]]

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. <<NOTE: Dec. 21, 2018 -  [H.R. 1222]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Congenital Heart 
Futures Reauthorization Act of 2017. 42 USC 201 note.>> 
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) <<NOTE: Grants.>>  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 132 STAT. 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. <<NOTE: Summary.>>  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 132 STAT. 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.

                                  <all>
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