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Annual Amyotrophic Lateral Sclerosis (ALS) Surveillance Meeting : August 1-2, 2017 summary report meeting transcript
  • Published Date:
    12/1/17
  • Language:
    English
Filetype[PDF-3.56 MB]


Details:
  • Description:
    Amyotrophic Lateral Sclerosis (ALS) continues to be a mysterious fatal disease with no known cause(s) for approximately 90-95 percent of those diagnosed with the disease. It is for this reason that the Agency for Toxic Substances and Disease Registry (ATSDR) established the National ALS Registry in 2010. The primary purpose of the ALS Registry is to describe the incidence and prevalence of ALS, to describe the demographics of ALS patients, and to examine the risk factors for the disease. In 2016, the ALS Registry published the second report on the prevalence of ALS in the United States in CDC’s Morbidity and Mortality Weekly Report (MMWR).

    Each year the ATSDR organizes the Annual ALS Surveillance Meeting to update stakeholders on the progress of the National ALS Registry, The National Biorepository, the Registry data and its implications, and to discuss strategies to further enhance the Registry for all of the stakeholders. In January 2017, the National ALS Biorepository was initiated with the primary goal of assembling the largest bank of ALS blood and tissue samples in the US and making them available for research.

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