ATSDR’s ALS Registry Launches the ALS Biorepository

National ALS Biorepository - A Component of the National ALS Registry

Learn how ALS researchers from around the world can access a new resource in their fight to identify the causes of ALS.

ATSDR's National ALS Registry launched the new National ALS Biorepository in January 2017.

The National ALS Biorepository is an exciting new component of the National ALS Registry that will increase the number of biological samples from persons with ALS available for research. These samples, along with the extensive epidemiologic data collected by the National ALS Registry, are a valuable resource in the fight to identify the causes of ALS.

The new National ALS Biorepository will collect, process, store, and disseminate a variety of biological specimens such as blood, urine, and tissue from a sample of persons with ALS enrolled in the National ALS Registry who agree to take part in the Biorepository.

The National ALS Biorepository is different from other biorepositories because it collects specimens from a geographically representative sample of people with ALS that is not tied to a specific clinic or location.

What is ALS?

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive, fatal neurodegenerative disorder that causes the loss of motor neurons, typically resulting in paralysis, respiratory failure, and death within 3–5 years of symptom.

Despite ALS being initially identified in 1869, the actual pathogenesis and cause remain unknown and there is currently no cure. The most consistently known risk factors for sporadic cases are being male, Caucasian, and older.

An estimated 5–10% of cases are attributed to heredity, while the remaining 90–95% are of unknown etiology. For these latter "sporadic" cases, many potential risk factors have been explored such as smoking and alcohol consumption; exposures to heavy metals, pesticides, and volatile organic compounds; head trauma; and occupational exposures.

The National ALS Registry, maintained by the Agency for Toxic Substances and Disease Registry (ATSDR), is a congressionally-mandated registry for persons in the U.S. with ALS.

The National ALS Registry is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its potential causes.

To learn more, visit the ALS Registry website.

Data for Researchers

Researchers can obtain complimentary linked epidemiological data which are not usually collected by a biorepository; e.g., military history, family history, and occupational history. Samples are accessible to researchers around the globe regardless of institutional affiliation. In addition, unlike some biorepositories, the cost of collection and storage of samples is not passed on to researchers requesting samples. However, researchers can expect to incur a nominal per sample retrieval cost, along with shipping costs to deliver samples.

The National ALS Registry website includes information about the National ALS Biorepository as well as an application form for researchers who wish to request samples. Research proposals are reviewed to ensure that access to National ALS Biorepository resources is restricted to ALS research projects with appropriate oversight and protection of human subjects.

Background for creating the ALS Biorepository

ATSDR conducted a study from 2011–2015 to pilot methods for collecting and banking biological specimens from participants in ATSDR's Registry. Throughout this pilot study, ATSDR held a series of expert panel meetings to solicit guidance and recommendations on topics such as sample types, storage, and biospecimen governance.

The expert panel included prominent neurologists, laboratorians, researchers, and bioethicists from around the country. The pilot study recruited a nationally representative sample of patients enrolled in Registry and included two specimen collection components: biological specimens from living participants (in-home) and postmortem specimens.

The pilot study demonstrated that a nationwide collection of pre- and post-mortem biospecimens from Registry-enrollees is feasible, warranted, and can be done in a cost-effective manner. Based on this, the expert panel recommended that ATSDR establish a permanent biorepository as part of the National ALS Registry.

For more information on the National ALS Registry's Biorepository, please go to the website.