Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments Act of 2008

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. 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) make publicly available 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 systematic review methodology used to develop such care considerations as a model for other muscular dystrophies.

This text is taken from the official record. PoliticalRepo does not editorialize.

Timeline

No timeline events have been ingested for this record yet.

Votes

No vote records are attached yet.

Versions

No version snapshots stored. Document URLs remain at the source.

Documents

3 official files

• Introduced in Senate (text)

  Introduced in Senate · EN · 8 February 2008

  ViewDownloadOpen at official source

• Introduced in Senate (PDF)

  Introduced in Senate · EN · 8 February 2008

  ViewDownloadOpen at official source

• Introduced in Senate

  summary · EN · 8 February 2008

  Open at official source

Sponsors

No sponsors or actors listed by the source.

Related records

No cross-record relationships stored yet.