IIB 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Congenital Heart Fu3 tures Reauthorization Act of 2017’’. 

4 SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEIL5 LANCE SYSTEM. 

6 Section 399V–2 of the Public Health Service Act (42 

7 U.S.C. 280g–13) is amended to read as follows: 

8 ‘‘SEC. 399V–2. NATIONAL CONGENITAL HEART DISEASE RE9 SEARCH, SURVEILLANCE, AND AWARENESS. 

10 ‘‘(a) IN GENERAL.—The Secretary shall— 

11 ‘‘(1) enhance and expand research and surveil12 lance infrastructure to study and track the epidemi13 ology of congenital heart disease (in this section re14 ferred to as ‘CHD’); and 

15 ‘‘(2) award grants to eligible entities to under16 take the activities described in this section. 

17 ‘‘(b) NATIONAL CONGENITAL HEART DISEASE

18 STUDY.— 

19 ‘‘(1) IN GENERAL.—The Secretary shall plan, 

20 develop, implement, and submit one or more reports 

21 to the Congress on a study to improve under22 standing of the epidemiology of CHD across the life23 span, from birth to adulthood, with particular inter24 est in the following: 

25 ‘‘(A) Health care utilization of those af26 fected by CHD. 


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1 ‘‘(B) Demographic factors associated with 

2 CHD, such as age, race, ethnicity, gender, and 

3 family history of individuals who are diagnosed 

4 with the disease. 

5 ‘‘(C) Outcome measures, such that analysis 

6 of the outcome measures will allow derivation of 

7 evidence-based best practices and guidelines for 

8 CHD patients. 

9 ‘‘(2) PERMISSIBLE CONSIDERATIONS.—The 

10 study under this subsection may— 

11 ‘‘(A) gather data on the health outcomes of 

12 a diverse population of those affected by CHD; 

13 ‘‘(B) consider health disparities among 

14 those affected by CHD, which may include the 

15 consideration of prenatal exposures; and 

16 ‘‘(C) incorporate behavioral, emotional, 

17 and educational outcomes of those affected by 

18 CHD. 

19 ‘‘(3) PUBLIC ACCESS.—Data generated from 

20 the study under this subsection shall be made avail21 able— 

22 ‘‘(A) for purposes of CHD research, sub23 ject to appropriate protections of personal pri24 vacy, including protections required by para25 graph (4); and 


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1 ‘‘(B) to the public, subject to paragraph 

2 (4) and with appropriate exceptions for protec3 tion of personal privacy. 

4 ‘‘(4) PATIENT PRIVACY.—The Secretary shall 

5 ensure that the study under this subsection is car6 ried out in a manner that complies with the require7 ments applicable to a covered entity under the regu8 lations promulgated pursuant to section 264(c) of 

9 the Health Insurance Portability and Accountability 

10 Act of 1996. 

11 ‘‘(c) ELIGIBILITY FOR GRANTS.—To be eligible to re12 ceive a grant under subsection (a)(2), an entity shall— 

13 ‘‘(1) be a public or private nonprofit entity with 

14 specialized experience in CHD; and 

15 ‘‘(2) submit to the Secretary an application at 

16 such time, in such manner, and containing such in17 formation as the Secretary may require. 

18 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

19 carry out this section, there is authorized to be appro20 priated $4,000,000 for each of fiscal years 2018 through 

21 2022.’’. 

22 SEC. 3. CONGENITAL HEART DISEASE RESEARCH. 

23 Section 425 of the Public Health Service Act (42 

24 U.S.C. 285b–8) is amended to read as follows: 


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1 ‘‘SEC. 425. CONGENITAL HEART DISEASE. 

2 ‘‘(a) IN GENERAL.—The Director of the Institute 

3 may expand, intensify, and coordinate research and re4 lated activities of the Institute with respect to congenital 

5 heart disease, which may include congenital heart disease 

6 research with respect to— 

7 ‘‘(1) causation of congenital heart disease, in8 cluding genetic causes; 

9 ‘‘(2) long-term outcomes in individuals with 

10 congenital heart disease, including infants, children, 

11 teenagers, adults, and elderly individuals; 

12 ‘‘(3) diagnosis, treatment, and prevention; 

13 ‘‘(4) studies using longitudinal data and retro14 spective analysis to identify effective treatments and 

15 outcomes for individuals with congenital heart dis16 ease; and 

17 ‘‘(5) identifying barriers to lifelong care for in18 dividuals with congenital heart disease. 

19 ‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.— 

20 The Director of the Institute may coordinate research ef21 forts related to congenital heart disease among multiple 

22 research institutions and may develop research networks. 

23 ‘‘(c) MINORITY AND MEDICALLY UNDERSERVED

24 COMMUNITIES.—In carrying out the activities described in 

25 this section, the Director of the Institute shall consider 


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1 the application of such research and other activities to mi2 nority and medically underserved communities. 

3 ‘‘(d) REPORT FROM NIH.—Not later than 1 year 

4 after the date of the enactment of the Congenital Heart 

5 Futures Reauthorization Act of 2017, the Director of 

6 NIH, acting through the Director of the Institute, shall 

7 provide a report to Congress— 

8 ‘‘(1) outlining the ongoing research efforts of 

9 the National Institutes of Health regarding con10 genital heart disease; and 

11 ‘‘(2) identifying— 

12 ‘‘(A) future plans for research regarding 

13 congenital heart disease; and 

14 ‘‘(B) the areas of greatest need for such 

15 research.’’. 

Passed the House of Representatives February 26, 

2018. 

Attest: KAREN L. HAAS, 

Clerk. 


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