ATSDR’s Annual Amyotrophic Lateral Sclerosis (ALS) Surveillance Meeting : July 22-23, 2015 summary meeting
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ATSDR’s Annual Amyotrophic Lateral Sclerosis (ALS) Surveillance Meeting : July 22-23, 2015 summary meeting

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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 describe the incidence and prevalence of ALS, to describe the demographics of ALS patients, and to examine the risk factors for the disease. In 2014, the ALS Registry published their first report on the prevalence of ALS in the United States in CDC’s Morbidity and Mortality Weekly Report (MMWR). In addition, ATSDR has published/supported publication of over two dozen journal articles relating to a number of ALS topics including, but not limited to, incidence and prevalence findings in three states and eight metropolitan areas, demographics of those living with the disease, selected potential risk factors for ALS, and recruitment for ALS research through the National ALS Registry.

      ATSDR organizes the Annual ALS Surveillance Meeting to update stakeholders on the progress of the National ALS Registry, the Registry data and its implication, and to discuss strategies to further enhance the Registry for all of the stakeholders. In 2016, the National ALS Biorepository will be initiated with the primary goal of providing the largest bank of ALS blood and tissue samples in the US.

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