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A National assessment of amyotrophic lateral sclerosis and other chronic neurologic conditions state surveillance programs : a report for the Agency for Toxic Substances and Disease Registry (ATSDR)
  • Published Date:
    June 6, 2009
  • Language:
Filetype[PDF-110.06 KB]

  • Description:
    On October 8, 2008, the President signed the ALS Registry Act (Public Law No. 110- 373) into law. It authorizes the Centers for Disease Control and Prevention (CDC) to establish a national amyotrophic lateral sclerosis (ALS) patient registry to identify ALS cases in the United States. The Agency for Toxic Substances and Disease Registry (ATSDR) has already begun to create the building blocks for this national registry by finding partners to pilot projects that would provide information for developing strategies to identify patients and highlight best practices in data sharing and acquisition.

    In November, ATSDR requested partnership with CSTE in assessing all existing state chronic neurologic disease surveillance systems, specifically concerning ALS. In collaboration with ATSDR and several CSTE member epidemiologists, CSTE created an assessment to be sent to the states.

    Nine (18%) states reported currently conducting surveillance for neurologic diseases. Only South Carolina conducted surveillance for all of the chronic neurologic diseases. Two states each reported conducting surveillance for only one neurologic disease: Alzheimer’s disease (South Dakota) and ALS (Massachusetts).

    This report compiles results of the assessment conducted by CSTE about the surveillance of chronic neurologic diseases, including ALS, by state. All information was provided by state health department staff specializing in chronic disease or environmental health epidemiology. The results should prove useful in determining the geographic distribution of surveillance activities and the legal impetus for surveillance; identifying the type of noninfectious, nontraumatic neurologic disease surveillance conducted by states; and providing further information about state programs associated with ALS surveillance.

    This report was supported and made possible through funding from the CDC Cooperative Agreement # 1U38HM000414 Year 1.

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