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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Introduced
 
House
Passed
 
Senate
Passed
 
President
Signed
 

 
02/07/08
 
09/24/08
 
09/26/08
 
10/08/08
 

Sponsor

E000179

Representative

Eliot Engel

D-NY

View Co-Sponsors (123)
 

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

 

Official Summary

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 Ce

Official Summary

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.

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