Integrating a biorepository into the National Amyotrophic Lateral Sclerosis Registry

Affiliates D. Kevin Horton [1], Wendy Kaye [2], Laurie Wagner [2]


[1]Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Sciences
[2] McKing Consulting Corporation

Journal Journal of Environmental Health
Summary ALS is a rare disease. Obtaining biospecimens is important to further research efforts and obtaining biospecimens on an ongoing basis can be challenging for researchers. ATSDR conducted a 4-year long pilot study to test the practicality, utility, and feasibility of creating a national biorespository of pre- and post-mortem biospecimens from persons living with ALS. As the Registry is the largest cohort of persons living with ALS in the U.S., it is the ideal group to attempt to collect biologic specimens on a large geographically representative group of persons living with ALS.
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