H. R. 594 

One Hundred Thirteenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Friday, 

the third day of January, two thousand and fourteen 

An Act 

To amend the Public Health Service Act relating to Federal research on muscular 

dystrophy, 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 ‘‘Paul D. Wellstone Muscular 

Dystrophy Community Assistance, Research and Education Amendments of 2014’’. 

SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NATIONAL 

INSTITUTES OF HEALTH. 

Section 404E of the Public Health Service Act (42 U.S.C. 283g) 

is amended— 

(1) in subsection (a)(1)— 

(A) by striking ‘‘Muscoskeletal’’ and inserting ‘‘Musculoskeletal’’; and 

(B) by inserting ‘‘Becker, congenital muscular dystrophy, limb-girdle muscular dystrophy,’’ after ‘‘Duchenne,’’; 

(2) in subsection (b)— 

(A) in paragraph (2)— 

(i) by striking ‘‘genetics,’’ at the second place it 

appears; and 

(ii) by inserting ‘‘cardiac and pulmonary function, 

and’’ after ‘‘imaging,’’; and 

(B) in paragraph (3), by inserting ‘‘and sharing of data’’ 

after ‘‘regular communication’’; 

(3) in subsection (d)— 

(A) in paragraph (2)— 

(i) in the matter preceding subparagraph (A), by 

striking ‘‘15’’ and inserting ‘‘18’’; and 

(ii) in subparagraph (A)— 

(I) by striking ‘‘and the Food and Drug 

Administration’’ and inserting ‘‘, the Food and 

Drug Administration, and the Administration for 

Community Living’’; 

(II) by inserting ‘‘and adults’’ after ‘‘children’’; 

and 

(III) by striking ‘‘such as the Department of 

Education’’ and inserting ‘‘including the Department of Education and the Social Security 

Administration’’; and 
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(B) in paragraph (4)(B), by inserting ‘‘, but shall meet 

no fewer than two times per calendar year’’ before the 

period; and 

(4) in subsection (e)— 

(A) in paragraph (1)— 

(i) in the matter preceding subparagraph (A), by 

striking ‘‘through the national research institutes’’ and 

inserting ‘‘through the agencies represented on the 

Coordinating Committee pursuant to subsection 

(d)(2)(A)’’; and 

(ii) in subparagraph (A)— 

(I) by inserting ‘‘public services,’’ before ‘‘and 

rehabilitative issues’’; and 

(II) by inserting ‘‘, studies to demonstrate the 

cost-effectiveness of providing independent living 

resources and support to patients with various 

forms of muscular dystrophy, and studies to determine optimal clinical care interventions for adults 

with various forms of muscular dystrophy’’ after 

‘‘including studies of the impact of such diseases 

in rural and underserved communities’’; and 

(B) in paragraph (2)(D), by inserting after ‘‘including 

new biological agents’’ the following: ‘‘and new clinical 

interventions to improve the health of those with muscular 

dystrophy’’. 

SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR DYSTROPHY. 

The second sentence of section 317Q(b) of the Public Health 

Service Act (42 U.S.C. 247b–18(b)) is amended by inserting before 

the period the following: ‘‘and, to the extent possible, ensure that 

data be representative of all affected populations and shared in 

a timely manner’’. 

SEC. 4. INFORMATION AND EDUCATION. 

Section 5(c) of the Muscular Dystrophy Community Assistance, 

Research and Education Amendments of 2001 (42 U.S.C. 247b– 

19(c)) is amended— 

(1) in paragraph (2)— 

(A) by inserting ‘‘for pediatric and adult patients, 

including acute care considerations,’’ after ‘‘issuance of care 

considerations’’; 

(B) by inserting ‘‘various’’ before ‘‘other forms of muscular dystrophy’’; and 

(C) by striking ‘‘and’’ at the end; 

(2) by redesignating paragraph (3) as paragraph (4); 

(3) by inserting after paragraph (2) the following: 

‘‘(3) in developing and updating care considerations under 

paragraph (2), incorporate strategies specifically responding to 

the findings of the national transitions survey of minority, 

young adult, and adult communities of muscular dystrophy 

patients; and’’; and 
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(4) in paragraph (4), as redesignated, by inserting ‘‘various’’ 

before ‘‘other forms of muscular dystrophy’’. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.