ATSDR’s ALS Registry Launches the ALS Biorepository
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.
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.ATSDR’s ALS Registry Launches the ALS Biorepository | Features | CDC