National ALS Biorepository Pilot Study
Amyotrophic lateral sclerosis (ALS), known as Lou Gehrig’s disease, is a progressive, life-limiting disease that causes the neurons that control the voluntary muscles to die. Individuals with ALS become weak and eventually lose the ability to speak, swallow or breathe. In order to better understand the causes of the disease and find treatments, researchers need access to both normal and diseased human tissue.
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.
