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 PALS. As the Registry is the largest cohort of PALS in the U.S., it is the ideal group to attempt to collect biologic specimens on a large geographically representative group of PALS.
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