H.R.5265 - Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008110th Congress (2007-2008)
|Sponsor:||Rep. Engel, Eliot L. [D-NY-17] (Introduced 02/07/2008)|
|Committees:||House - Energy and Commerce|
|Latest Action:||10/08/2008 Became Public Law No: 110-361. (TXT | PDF)|
|Major Recorded Votes:||09/24/2008 : Passed House|
This bill has the status Became Law
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Summary: H.R.5265 — 110th Congress (2007-2008)All Bill Information (Except Text)
Public Law No: 110-361 (10/08/2008)
Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008 - Amends the Public Health Service Act to designate centers of excellence for research on various forms of muscular dystrophy as Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers.
Authorizes the Muscular Dystrophy Interagency Coordinating Committee to evaluate the potential need to enhance the clinical research infrastructure required to test emerging therapies for the various forms of muscular dystrophy.
Authorizes the Secretary of Health and Human Services to ensure that any data on patients that is collected as part of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) is regularly updated to reflect changes in patient condition over time. Requires the Director of the Centers for Disease Control and Prevention (CDC) to report to the appropriate congressional committees on MD STARnet and data collection. Authorizes the Secretary to provide prospective health outcome data on the health and survival of people with muscular dystrophy.
Authorizes the Secretary, in carrying out a program to provide information and education on muscular dystrophy to health professionals and the general public, to: (1) partner with leaders in the muscular dystrophy patient community; (2) cooperate with professional organizations and the patient community to develop, issue, and update care considerations for Duchenne-Baker muscular dystrophy and other forms of muscular dystrophy; and (3) widely disseminate such care considerations as broadly as possible, including through partnership opportunities with the muscular dystrophy patient community.