National ALS Biorepository – A Component of the National ALS Registry

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Learn how ALS researchers from around the world can access and use ALS Biorepository samples as a valuable resource in their fight to identify the causes of ALS.

The National ALS Biorepository is a 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 National ALS Biorepository collects, processes, stores, and distributes 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 complementary 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.

Ongoing studies using samples from the ALS Biorepository

Currently four studies are using samples from the Biorepository for research that contribute to the understanding of potential risk factors for ALS.  In addition, the Biorepository is in the process of reviewing several additional requests for samples.  Being able to link biological samples with the extensive epidemiological data in the Registry as well as having the genetic profile of those taking part in the Biorepository, makes the samples a unique resource.  The variety of studies already using Biorepository samples illustrates its contribution to ALS research.



Description of Studies Using Samples from the Biorepository
Description of Project Group conducting analysis # of samples requested
Metals analysis CDC/ATSDR 1905
Genomic analysis NIH/ATSDR 317
Micro RNA Columbia School of Public Health 514
Role of FUS protein in inflammation and neurodegenerative disease Icahn School of Medicine at Mount Sinai 360

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Page last reviewed: February 13, 2018
Page last updated: February 13, 2018