3.0.0 315 2023-01-11T13:25:42Z 2023-01-11T13:25:42Z Senate S S 2013-02-13 113 sshr00 Health, Education, Labor, and Pensions Committee Senate Standing Reported by 2014-07-23T20:10:56Z Markup by 2014-07-23T18:30:00Z Referred to 2013-02-13T22:10:38Z Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 113 594 HR 2014-09-26 Became Public Law No: 113-166. Related bill CRS Related bill House 2014-07-23 Senate Placed on Senate Legislative Calendar under General Orders. Calendar No. 478. Calendars 2014-07-23 sshr00 Health, Education, Labor, and Pensions Committee Senate Committee on Health, Education, Labor, and Pensions. Reported by Senator Harkin with an amendment in the nature of a substitute and an amendment to the title. Without written report. Committee 2014-07-23 Committee on Health, Education, Labor, and Pensions. Reported by Senator Harkin with an amendment in the nature of a substitute and an amendment to the title. Without written report. Committee 14000 9 Library of Congress sshr00 Health, Education, Labor, and Pensions Committee 2014-07-23 sshr00 Health, Education, Labor, and Pensions Committee Senate Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably. Committee 2013-02-13 sshr00 Health, Education, Labor, and Pensions Committee Senate Read twice and referred to the Committee on Health, Education, Labor, and Pensions. IntroReferral 2013-02-13 Introduced in Senate IntroReferral 10000 9 Library of Congress K000367 Sen. Klobuchar, Amy [D-MN] Amy Klobuchar D MN N W000437 Sen. Wicker, Roger F. [R-MS] Roger Wicker R MS F. 2013-02-13 True S000033 Sen. Sanders, Bernard [I-VT] Bernard Sanders I VT 2013-02-13 True C001035 Sen. Collins, Susan M. [R-ME] Susan Collins R ME M. 2013-02-13 True M000639 Sen. Menendez, Robert [D-NJ] Robert Menendez D NJ 2013-02-13 True I000055 Sen. Isakson, Johnny [R-GA] Johnny Isakson R GA 2013-02-13 True M000702 Sen. Mikulski, Barbara A. [D-MD] BARBARA MIKULSKI D MD ANN 2013-02-13 True L000174 Sen. Leahy, Patrick J. [D-VT] Patrick Leahy D VT 2013-02-13 True L000123 Sen. Lautenberg, Frank R. [D-NJ] FRANK LAUTENBERG D NJ R. 2013-02-13 True N000032 Sen. Nelson, Bill [D-FL] CLARENCE NELSON D FL WILLIAM 2013-02-13 True S000148 Sen. Schumer, Charles E. [D-NY] Charles Schumer D NY E. 2013-02-25 False C000567 Sen. Cochran, Thad [R-MS] Thad Cochran R MS 2013-02-28 False B000711 Sen. Boxer, Barbara [D-CA] BARBARA BOXER D CA 2013-02-28 False K000383 Sen. King, Angus S., Jr. [I-ME] Angus King I ME S. 2013-03-11 False B001267 Sen. Bennet, Michael F. [D-CO] Michael Bennet D CO 2013-04-22 False S000770 Sen. Stabenow, Debbie [D-MI] Debbie Stabenow D MI 2013-06-17 False B000575 Sen. Blunt, Roy [R-MO] Roy Blunt R MO 2013-07-31 False S001181 Sen. Shaheen, Jeanne [D-NH] Jeanne Shaheen D NH 2013-09-23 False M000133 Sen. Markey, Edward J. [D-MA] Edward Markey D MA J. 2014-02-03 False G000555 Sen. Gillibrand, Kirsten E. [D-NY] Kirsten Gillibrand D NY E. 2014-02-24 False B000944 Sen. Brown, Sherrod [D-OH] Sherrod Brown D OH 2014-02-26 False T000464 Sen. Tester, Jon [D-MT] Jon Tester D MT 2014-02-26 False G000359 Sen. Graham, Lindsey [R-SC] Lindsey Graham R SC 2014-03-06 False C001088 Sen. Coons, Christopher A. [D-DE] Christopher Coons D DE A. 2014-03-06 False W000817 Sen. Warren, Elizabeth [D-MA] Elizabeth Warren D MA A. 2014-04-03 False C000127 Sen. Cantwell, Maria [D-WA] Maria Cantwell D WA 2014-04-08 False P000590 Sen. Pryor, Mark L. [D-AR] Mark Pryor D AR Lunsford 2014-04-30 False B001288 Sen. Booker, Cory A. [D-NJ] Cory Booker D NJ 2014-06-18 False F000457 Sen. Franken, Al [D-MN] Al Franken D MN 2014-07-21 False H000206 Sen. Harkin, Tom [D-IA] THOMAS HARKIN D IA RICHARD 2014-07-22 False H.R.594 https://www.congress.gov/bill/113th-congress/house-bill/594 Health Cardiovascular and respiratory health Child health Drug safety, medical device, and laboratory regulation Government information and archives Government studies and investigations Health information and medical records Health programs administration and funding Medical education Medical research Minority health Musculoskeletal and skin diseases Research administration and funding Health 00 2013-02-13 Introduced in Senate 2013-04-08T19:07:29Z Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2013 - Amends the Public Health Service Act to revise the muscular dystrophy research program of the National Institutes of Health (NIH).

Multiplies the 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.

]]> 01 2014-07-23 Reported to Senate with amendment(s) 2014-09-23T16:08:29Z Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 - (Sec. 2) 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.

(Sec. 3) Requires the Secretary of Health and Human Services (HHS), in carrying out epidemiological activities regarding Duchenne and other forms of muscular dystrophy, to ensure that data are representative of all affected populations and shared in a timely manner.

(Sec. 4) Amends the Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2001 to authorize the Secretary to cooperate with professional organizations and the patient community in the development and issuance of care considerations, including acute care considerations, for pediatric and adult muscular dystrophy patients. Authorizes the Secretary, in developing and updating care considerations, to incorporate strategies specifically responding to the findings of the national transitions survey of minority, young adult, and adult communities of muscular dystrophy patients.]]> Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 Display Title Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 Short Titles as Reported to Senate Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments of 2014 S Senate Short Titles as Introduced Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2013 Official Title as Introduced A bill to reauthorize and extend the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008. Reported to Senate 2014-07-23T04:00:00Z https://www.govinfo.gov/content/pkg/BILLS-113s315rs/xml/BILLS-113s315rs.xml Introduced in Senate 2013-02-13T05:00:00Z https://www.govinfo.gov/content/pkg/BILLS-113s315is/xml/BILLS-113s315is.xml 2014-07-23 Placed on Senate Legislative Calendar under General Orders. Calendar No. 478. text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain. Congressional Research Service, Library of Congress This file contains bill summaries and statuses for federal legislation. A bill summary describes the most significant provisions of a piece of legislation and details the effects the legislative text may have on current law and federal programs. Bill summaries are authored by the Congressional Research Service (CRS) of the Library of Congress. As stated in Public Law 91-510 (2 USC 166 (d)(6)), one of the duties of CRS is "to prepare summaries and digests of bills and resolutions of a public general nature introduced in the Senate or House of Representatives". For more information, refer to the User Guide that accompanies this file.