2016 Annual ALS Surveillance Meeting executive summary, August 3-4, 2016
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2016 Annual ALS Surveillance Meeting executive summary, August 3-4, 2016

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      Due to the limited information on the unknown cause(s) of Amyotrophic Lateral Sclerosis (ALS), 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 estimate the incidence and prevalence of ALS, describe the demographics of persons with ALS (PALS), and examine the risk factors for the disease. On August 5, 2016, the National ALS Registry published their second report on the prevalence of ALS in the United States in CDC’s Morbidity and Mortality Weekly Report (MMWR).

      ATSDR organizes the Annual ALS Surveillance Meeting to update stakeholders on the progress of the National ALS Registry, discuss the uses of Registry data, and to explore strategies to further enhance the Registry for all stakeholders. In late 2016, the Registry will launch the National ALS Biorepository with the primary goal of providing scientists access to the largest bank of bio samples in the US (e.g., blood, urine, tissue) for research.

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