National Amyotrophic Lateral Sclerosis (ALS) Registry Annual Meeting, August 7-8, 2018 : summary report
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National Amyotrophic Lateral Sclerosis (ALS) Registry Annual Meeting, August 7-8, 2018 : summary report

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    The Agency for Toxic Substances and Disease Registry (ATSDR) established the National ALS Registry to determine how many people in the US are living with ALS, to describe the demographics of ALS patients, and most importantly to examine the risk factors for ALS. Although the Registry’s primary purpose is to capture cases of ALS, the Registry does a lot more than just count cases. The Registry is also:

     Funding ALS research,

     Collecting specimens from Registry enrollees through the National ALS Biorepository,

     Connecting patients with researchers recruiting for ALS clinical trials or epidemiological studies,

     Obtaining and analyzing potential etiologic data from Registry enrollees through 17 different online risk factor modules such as occupational history, military history, residential history, history of traumatic brain injury and (TBI), and

     Providing data and biospecimens to scientists to further ALS research.

    ATSDR held the National ALS Registry Annual Meeting in Atlanta on August 7-8, 2018. There were 51 attendees, including persons living with ALS, neurologists, researchers, representatives of national ALS organizations, representatives of pharmaceutical companies, Registry staff, and other ALS experts.

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