The 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 tissue from donors with ALS.

In 2013, 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.

Based on the results of the pilot study, ATSDR moved forward with establishing the biorepository. Today, NDRI is leading the collection of biospecimens from registered donors to support the biorepository to advance ALS research.

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 tissue from donors with ALS.

In 2013, 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.

Based on the results of the pilot study, ATSDR moved forward with establishing the biorepository. Today, NDRI is leading the collection of biospecimens from registered donors to support the biorepository to advance ALS research.