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[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5265 Enrolled Bill (ENR)]

        H.R.5265

                       One Hundred Tenth Congress

                                 of the

                        United States of America

                          AT THE SECOND SESSION

          Begun and held at the City of Washington on Thursday,
            the third day of January, two thousand and eight

                                 An Act

 
  To amend the Public Health Service Act to provide for research with 
   respect to various forms of muscular dystrophy, including Becker, 
 congenital, distal, Duchenne, Emery-Dreifuss facioscapulohumeral, limb-
      girdle, myotonic, and oculopharyngeal, muscular dystrophies.

    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 2008''.
SEC. 2. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES OF 
NIH WITH RESPECT TO RESEARCH ON MUSCULAR DYSTROPHY.
    (a) Technical Correction.--Section 404E of the Public Health 
Service Act (42 U.S.C. 283g) is amended by striking subsection (f) 
(relating to reports to Congress) and redesignating subsection (g) as 
subsection (f).
    (b) Amendments.--Section 404E of the Public Health Service Act (42 
U.S.C. 283g) is amended--
        (1) in subsection (a)(1), by inserting ``the National Heart, 
    Lung, and Blood Institute,'' after ``the Eunice Kennedy Shriver 
    National Institute of Child Health and Human Development,'';
        (2) in subsection (b)(1), by adding at the end of the 
    following: ``Such centers of excellence shall be known as the `Paul 
    D. Wellstone Muscular Dystrophy Cooperative Research Centers'.''; 
    and
        (3) by adding at the end the following:
    ``(g) Clinical Research.--The Coordinating Committee may evaluate 
the potential need to enhance the clinical research infrastructure 
required to test emerging therapies for the various forms of muscular 
dystrophy by prioritizing the achievement of the goals related to this 
topic in the plan under subsection (e)(1).''.
SEC. 3. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF CDC WITH RESPECT TO 
EPIDEMIOLOGICAL RESEARCH ON MUSCULAR DYSTROPHY.
    Section 317Q of the Public Health Service Act (42 U.S.C. 247b-18) 
is amended--
        (1) by redesignating subsection (d) as subsection (f); and
        (2) by inserting after subsection (c) the following:
    ``(d) Data.--In carrying out this section, the Secretary may ensure 
that any data on patients that is collected as part of the Muscular 
Dystrophy STARnet (under a grant under this section) is regularly 
updated to reflect changes in patient condition over time.
    ``(e) Reports and Study.--
        ``(1) Annual report.--Not later than 18 months after the date 
    of the enactment of the Paul D. Wellstone Muscular Dystrophy 
    Community Assistance, Research, and Education Amendments of 2008, 
    and annually thereafter, the Director of the Centers for Disease 
    Control and Prevention shall submit to the appropriate committees 
    of the Congress a report--
            ``(A) concerning the activities carried out by MD STARnet 
        site funded under this section during the year for which the 
        report is prepared;
            ``(B) containing the data collected and findings derived 
        from the MD STARnet sites each fiscal year (as funded under a 
        grant under this section during fiscal years 2008 through 
        2012); and
            ``(C) that every 2 years outlines prospective data 
        collection objectives and strategies.
        ``(2) Tracking health outcomes.--The Secretary may provide 
    health outcome data on the health and survival of people with 
    muscular dystrophy.''.
SEC. 4. INFORMATION AND EDUCATION.
    Section 5 of the Muscular Dystrophy Community Assistance, Research 
and Education Amendments of 2001 (42 U.S.C. 247b-19) is amended--
        (1) by redesignating subsection (c) as subsection (d); and
        (2) by inserting after subsection (b) the following:
    ``(c) Requirements.--In carrying out this section, the Secretary 
may--
        ``(1) partner with leaders in the muscular dystrophy patient 
    community;
        ``(2) cooperate with professional organizations and the patient 
    community in the development and issuance of care considerations 
    for Duchenne-Becker muscular dystrophy, and other forms of muscular 
    dystrophy, and in periodic review and updates, as appropriate; and
        ``(3) widely disseminate the Duchenne-Becker muscular dystrophy 
    and other forms of muscular dystrophy care considerations as 
    broadly as possible, including through partnership opportunities 
    with the muscular dystrophy patient community.''.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.
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