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[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5265 Engrossed Amendment Senate (EAS)]

  
  
  
  
  
  
  
  
  
  

                  In the Senate of the United States,

                    September 26 (legislative day, September 17), 2008.
    Resolved, That the bill from the House of Representatives (H.R. 
5265) entitled ``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.'', do pass with the following

                               AMENDMENT:

            Strike all after the enacting clause and insert the 
      following:

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.''.

            Attest:

                                                             Secretary.
110th CONGRESS

  2d Session

                               H.R. 5265

_______________________________________________________________________

                               AMENDMENT
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