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  • Not enacted
    The President has not signed this bill
  • The house has not voted
  • The senate has not voted
      senate Committees
      Senate Committee on Health, Education, Labor, and Pensions
    IntroducedJune 16th, 2009

Bill Details

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Title

National MS and Parkinson's Disease Registries Act

Official Title

A bill to amend the Public health Service Act to provide for the establishment of permanent national surveillance systems for multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

Summary

National MS and Parkinson's Disease Registries Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) , acting through the Director of the Agency for Toxic Substances and Disease Registry, to: (1) develop a system to collect data on multiple sclerosis (MS) and a system to collect data on Parkinson's disease; (2) establish a national surveillance system for the collection and storage of data for each such disease, including population-based registries of U.S. cases of MS and Parkinson's disease; (3) provide analysis regarding expansion of national disease surveillance systems for other neurological diseases and disorders; and (4) establish the Advisory Committee on Neurological Disease Registries. Allows the Secretary, acting through the Director, to provide for the collection, analysis, and reporting of data on MS and Parkinson's disease. Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to Parkinson's disease and MS data. Requires the Secretary to ensure that epidemiological and other types of information collected are made available to agencies such as the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Department of Veterans Affairs (VA), and the Department of Defense (DOD).
    How can we spend money on issues where the facts are not known. We don’t know how many people are impacted by these illnesses. Unlike Cancer or heart disease which are treated by specialists making data collection easier not all PD or MS patients are treated
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