Details:

Corporate Authors:
United States. Agency for Toxic Substances and Disease Registry.
Description:
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.

Publication date from document properties.

2018-ALS-Annual-Meeting-Summary-Report.pdf


Subjects:
[+]
Amyotrophic Lateral Sclerosis/epidemiology Registries
Document Type:
Report
Genre:
Conference Publications
Place as Subject:
United States
Collection(s):
Stephen B. Thacker CDC Library collection
Main Document Checksum:
[+]
urn:sha256:d8de5602efc334f64f23176c29acaa1ea62f9066a5187795cc9a2b0aa92381df
Download URL:
https://stacks.cdc.gov/view/cdc/76003/cdc_76003_DS1.pdf
File Type:

Supporting Files

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