S.315 - Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2013113th Congress (2013-2014)
Summary: S.315 — 113th Congress (2013-2014)
Introduced in Senate (02/13/2013)
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.