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[110th Congress Public Law 361]
[From the U.S. Government Printing Office]

[DOCID: f:publ361.110]

[[Page 4009]]

PAUL D. WELLSTONE MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH, AND 
                      EDUCATION AMENDMENTS OF 2008

[[Page 122 STAT. 4010]]

Public Law 110-361
110th Congress

                                 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. <<NOTE: Oct. 8, 2008 -  [H.R. 5265]>> 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled, <<NOTE: Paul D. 
Wellstone Muscular Dystrophy Community Assistance, Research, and 
Education Amendments of 2008.>> 
SECTION 1. <<NOTE: 42 USC 201 note.>> 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) <<NOTE: Federal buildings and facilities.>> 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

[[Page 122 STAT. 4011]]

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

[[Page 122 STAT. 4012]]

        opportunities with the muscular dystrophy patient community.''.

    Approved October 8, 2008.

LEGISLATIVE HISTORY--H.R. 5265:
---------------------------------------------------------------------------

CONGRESSIONAL RECORD, Vol. 154 (2008):
            Sept. 23, 24, considered and passed House.
            Sept. 26, considered and passed Senate, amended.
            Sept. 27, House concurred in Senate amendment.

                                  <all>
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