National Amyotrophic Lateral Sclerosis (ALS) Biorepository feasibility study

Affiliates Wendy E. Kaye [1], Laurie Wagner [1], Paul Mehta [2]


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

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary Creating a geographically diverse biorepository has unique challenges. Recruitment was slower than expected, finding reliable phlebotomists across the country was difficult, and there were unexpected logistical issues related to shipping specimens including higher than average temperatures and mechanical failure. However, with some modifications to the pilot project, it is feasible to incorporate a biorepository into the National ALS Registry. These specimens will be a valuable resource for researchers who will be able to request specimens for future ALS studies.
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