Integrating a biorepository into the National Amyotrophic Lateral Sclerosis Registry

At a glance

Reviewing the 4-year long pilot study of the National ALS Biorepository

Affiliates

D. Kevin Horton1, Wendy Kaye2, Laurie Wagner2

  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.

Link to paper

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Content Source:
Agency for Toxic Substances and Disease Registry