Programs & Initiatives

National ALS Biorepository Pilot Study

National ALS Biorepository Pilot Study

Amyotrophic lateral sclerosis (ALS), known as Lou Gehrig’s disease, is a progressive, life-limiting motorneuron disease. Researchers need access to both normal and diseased human tissue in order to better understand the causes of and find treatments for ALS.

NDRI has a special focus on ALS through collaborations with the National ALS Biorepository. McKing Consulting Corporation contracted NDRI to participate in a pilot study to explore methods for collecting and banking brain tissues from patients enrolled in the National ALS Registry, maintained by the federal Agency for Toxic Substances and Disease Registry (ATSDR). The National ALS Biorepository Pilot Study chose NDRI based on our proven experience and established systems for recovering tissues from deceased donors nationwide. We maintain a database of ALS patients who have consented to donate tissue, as well as next-to-kin information to allow timely recovery of tissue.

The pilot study ended in September 2015. Based on the results ATSDR moved forward with establishing the biorepository. Today, NDRI is leading the collection of biospecimens from those donors to develop the biorepository to support ALS research. We collect and ship biospecimens directly to the Veterans Administration ALS Brain Bank in Boston, Mass.

NDRI is a Not-For-Profit (501c3) Corporation.