National ALS Biorepository
earn 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.
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.