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[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 594 Enrolled Bill (ENR)]

        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

            (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
        (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.
```