U.S. Congress - H.R.5265 Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amen...
H.R.5265 - Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008
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. view all titles (3)
All Bill Titles
- Official: 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. as introduced.
- Short: Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008 as introduced.
- Short: Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008 as enacted.
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- Past Seven Days: 30
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Latest Vote
Result: Passed - September 24, 2008
Roll call number 633 in the House
Question: On Motion to Suspend the Rules and Pass, as Amended: H R 5265 Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008
Required percentage of 'Aye' votes: 2/3 (66%)
Percentage of 'aye' votes:
96%
Official Summary
2/7/2008--Introduced.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 COfficial Summary
2/7/2008--Introduced.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.
Requires the Muscular Dystrophy Interagency Coordinating Committee to give special consideration to enhancing the clinical research infrastructure required to test emerging therapies for the various forms of muscular dystrophy.
Requires 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:
(1) report to the appropriate congressional committees on MD STARnet and data collection; and
(2) provide prospective health outcome data on the health and survival of people with muscular dystrophy.
Requires the Director of CDC, 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; and
(2) widely disseminate the Duchenne-Becker muscular dystrophy care considerations.
Requires the Director of the Agency for Healthcare Research and Quality to:
(1) evaluate the available scientific evidence to develop and issue an initial set of care considerations for Duchenne-Becker muscular dystrophy and provide ongoing review and updates where appropriate; and
(2) replicate the same methodology used to develop such care considerations as a model for other muscular dystrophies.
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