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United States · Law · HR

H.R. 594 (113th)

Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014

enactedUnited States· United States Congress· EN

Introduced

8 February 2013

Last action

26 September 2014 · President

Status

Became Public Law No: 113-166.

Sponsors

Rep. Burgess, Michael C. [R-TX-26], Rep. Engel, Eliot L. [D-NY-16], Rep. Schwartz, Allyson Y. [D-PA-13], Rep. Hall, Ralph M. [R-TX-4], Rep. Peterson, Collin C. [D-MN-7], Rep. Matsui, Doris O. [D-CA-7], Rep. Maloney, Carolyn B. [D-NY-12], Rep. Bishop, Sanford D. [D-GA-2], Rep. Andrews, Robert E. [D-NJ-1], Rep. Rush, Bobby L. [D-IL-1], Rep. Runyan, Jon [R-NJ-3], Rep. Graves, Sam [R-MO-6], Rep. Poe, Ted [R-TX-2], Rep. Sessions, Pete [R-TX-17], Rep. King, Peter T. [R-NY-2], Rep. Shea-Porter, Carol [D-NH-1], Rep. Owens, William L. [D-NY-23], Sen. Welch, Peter [D-VT], Rep. Bachus, Spencer [R-AL-6], Rep. Lowey, Nita M. [D-NY-17], Sen. Markey, Edward J. [D-MA], Rep. Slaughter, Louise McIntosh [D-NY-25], Rep. Brownley, Julia [D-CA-26], Rep. Holt, Rush [D-NJ-12], Rep. Ellison, Keith [D-MN-5], Rep. Kilmer, Derek [D-WA-6], Rep. Green, Gene [D-TX-29], Rep. Loebsack, David [D-IA-2], Rep. Luetkemeyer, Blaine [R-MO-3], Rep. Tierney, John F. [D-MA-6], Rep. Smith, Adam [D-WA-9], Rep. Johnson, Sam [R-TX-3], Rep. Wittman, Robert J. [R-VA-1], Rep. Kind, Ron [D-WI-3], Rep. Gerlach, Jim [R-PA-6], Rep. Polis, Jared [D-CO-2], Rep. Michaud, Michael H. [D-ME-2], Rep. Perlmutter, Ed [D-CO-7], Rep. DeGette, Diana [D-CO-1], Sen. Gardner, Cory [R-CO], Rep. Lipinski, Daniel [D-IL-3], Rep. Coffman, Mike [R-CO-6], Rep. Guthrie, Brett [R-KY-2], Rep. Rigell, E. Scott [R-VA-2], Rep. Young, Don [R-AK-At Large], Rep. McCollum, Betty [D-MN-4], James Renacci, Rep. Forbes, J. Randy [R-VA-4]

Subjects

Healthcare, Education

Source updated

5 December 2025

Healthcare · Education

Official sourceDownload fileView documentsShare

Summary

Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2013 - Amends the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH). Expands the range of forms of muscular dystrophy included within the program. Requires the research conducted through Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers to include cardiac and pulmonary function research. Requires the Director of NIH to ensure the sharing of data between such centers. Revises the composition of the Muscular Dystrophy Coordinating Committee (MDCC) to include the Social Security Administration and the United States Administration for Community Living. Requires the MDCC to meet at least two times per year. Requires the MDCC Action Plan to provide for: (1) health economic studies to demonstrate the cost-effectiveness of providing independent living resources and support to patients with various forms of muscular dystrophy, (2) studies to determine optimal clinical care interventions for adults with various forms of muscular dystrophy, and (3) the development of clinical interventions to improve the health of adults with various forms of muscular dystrophy. Requires the MDCC to develop a plan to expedite the evaluation and approval of emerging therapies and personalized medicines that have the potential to decrease fatal disease progression across the various forms of muscular dystrophy. Requires the Secretary of Health and Human Services (HHS), in carrying out epidemiological activities regarding Duchenne and other forms of muscular dystrophies, to ensure that data from different racial and ethnic populations is captured and made publicly available to investigators conducting public or private research on muscular dystrophy. Directs the Secretary to foster ongoing engagement and collaboration between the surveillance program and the research centers. Amends the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to authorize the Secretary to: (1) update and disseminate widely existing Duchenne-Becker muscular dystrophy care considerations for pediatric patients, and (2) develop and disseminate widely Duchenne-Becker muscular dystrophy considerations for adult patients and acute care considerations for all muscular dystrophy populations. Directs that such care considerations should build upon existing efforts currently underway for specified forms of muscular dystrophy and incorporate strategies specifically responding to the findings of the national transitions survey of minority, young adult, and adult communities of muscular dystrophy patients.

This text is taken from the official record. PoliticalRepo does not editorialize.

Timeline

  1. 8 February 2013

    Referred

    Referred to the Subcommittee on Health.

    Source: Committee

  2. 8 February 2013

    Introduced

    Referred to the House Committee on Energy and Commerce.

    Source: IntroReferral

  3. 8 February 2013

    Introduced

    Introduced in House

    Source: IntroReferral

  4. 8 February 2013

    Introduced

    Introduced in House

    Source: IntroReferral

  5. 19 June 2014

    Committee

    Forwarded by Subcommittee to Full Committee (Amended) by Unanimous Consent .

    Source: Committee

  6. 19 June 2014

    Committee

    Subcommittee Consideration and Mark-up Session Held.

    Source: Committee

  7. 14 July 2014

    Committee

    Committee Consideration and Mark-up Session Held.

    Source: Committee

  8. 15 July 2014

    Reported

    Ordered to be Reported (Amended) by Voice Vote.

    Source: Committee

  9. 15 July 2014

    Committee

    Committee Consideration and Mark-up Session Held.

    Source: Committee

  10. 24 July 2014

    Calendars

    Placed on the Union Calendar, Calendar No. 416.

    Source: Calendars

  11. 24 July 2014

    Reported

    Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 113-556.

    Source: Committee

  12. 24 July 2014

    Reported

    Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 113-556.

    Source: Committee

  13. 28 July 2014

    Floor

    Mr. Burgess moved to suspend the rules and pass the bill, as amended.

    Source: Floor

  14. 28 July 2014

    Passed

    The title of the measure was amended. Agreed to without objection.

    Source: Floor

  15. 28 July 2014

    Passed

    Motion to reconsider laid on the table Agreed to without objection.

    Source: Floor

  16. 28 July 2014

    Passed

    On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote. (text: CR H6933)

    Source: Floor

  17. 28 July 2014

    Passed

    Passed/agreed to in House: On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote.(text: CR H6933)

    Source: Floor

  18. 28 July 2014

    Floor

    DEBATE - The House proceeded with forty minutes of debate on H.R. 594.

    Source: Floor

  19. 28 July 2014

    Floor

    Considered under suspension of the rules. (consideration: CR H6933-6935)

    Source: Floor

  20. 29 July 2014

    Introduced

    Received in the Senate.

    Source: IntroReferral

  21. 1 August 2014

    Introduced

    Read twice. Placed on Senate Legislative Calendar under General Orders. Calendar No. 529.

    Source: Calendars

  22. 18 September 2014

    Passed

    Passed Senate without amendment by Unanimous Consent. (consideration: CR S5862)

    Source: Floor

  23. 18 September 2014

    Passed

    Passed/agreed to in Senate: Passed Senate without amendment by Unanimous Consent.(consideration: CR S5862)

    Source: Floor

  24. 19 September 2014

    Floor

    Message on Senate action sent to the House.

    Source: Floor

  25. 23 September 2014

    Floor

    Presented to President.

    Source: Floor

  26. 23 September 2014

    President

    Presented to President.

    Source: President

  27. 26 September 2014

    Became law

    Became Public Law No: 113-166.

    Source: President

  28. 26 September 2014

    Became law

    Signed by President.

    Source: BecameLaw

  29. 26 September 2014

    President

    Signed by President.

    Source: President

Votes

No vote records are attached yet.

Versions

Documents

17 official files

Enrolled Bill (text)

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  • Enrolled Bill (text)

    Enrolled Bill · EN

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  • Enrolled Bill (PDF)

    Enrolled Bill · EN

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  • Public Law (text)

    Public Law · EN · 27 September 2014

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  • Public Law (PDF)

    Public Law · EN · 27 September 2014

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  • Public Law

    summary · EN · 26 September 2014

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  • Passed Senate without amendment

    summary · EN · 18 September 2014

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  • Placed on Calendar Senate (text)

    Placed on Calendar Senate · EN · 1 August 2014

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  • Placed on Calendar Senate (PDF)

    Placed on Calendar Senate · EN · 1 August 2014

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  • Engrossed in House (text)

    Engrossed in House · EN · 28 July 2014

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  • Engrossed in House (PDF)

    Engrossed in House · EN · 28 July 2014

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  • Passed House amended

    summary · EN · 28 July 2014

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  • Reported in House (text)

    Reported in House · EN · 24 July 2014

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  • Reported in House (PDF)

    Reported in House · EN · 24 July 2014

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  • Reported to House with amendment(s)

    summary · EN · 24 July 2014

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  • Introduced in House (text)

    Introduced in House · EN · 8 February 2013

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  • Introduced in House (PDF)

    Introduced in House · EN · 8 February 2013

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  • Introduced in House

    summary · EN · 8 February 2013

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