- To learn what causes ALS, researchers may study biological samples such as blood or tissue from people with ALS; such samples can be "banked" in a biorepository.
- The Agency for Toxic Substances and Disease Registry (ATSDR), part of the Centers for Disease Control and Prevention (CDC), is coordinating the National ALS Biorepository Pilot Study to find the best way to collect and store these samples and to help determine if a national ALS biorepository is practical.
- This biorepository feasibility study is being conducted as part of ATSDR’s National ALS Registry. The epidemiologic data already being collected, paired with the biospecimen samples, will make the National ALS Registry a rich source of data for further understanding of ALS.
The Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Biorepository Pilot Study as part of the National ALS Registry. The feasibility study is designed to identify the best methods for collecting and storing biological samples, like tissue and blood, from people with amyotrophic lateral sclerosis (ALS).
Study findings are expected to help determine if a national ALS biorepository is practical.
"MDA has been supporting the development of the National ALS Registry for some time and welcomes this new pilot project," said MDA Vice President of Research Jane Larkindale. "The addition of biological tissues to a registry with epidemiological data hopefully will enable researchers to determine genetic and environmental risks for ALS, in addition to providing an additional source of tissues to researchers for other types of projects."
The study marks the first step toward the creation of a bank of ALS biological samples that may be linked to the National ALS Registry, which was developed and is managed by ATSDR.
Biological samples may help determine the causes of ALS
Biorepository samples will be matched with information already collected and stored by the National ALS Registry. Registry information such as demographics (age, income, education, etc.), environmental exposure and occupational history is submitted by voluntary participants via surveys.
Access to the bank of ALS-associated biological samples, along with associated information about the people from whom the samples were taken, may help researchers better understand the underlying mechanisms that cause and drive ALS.
More information, how to participate
There are two components to the National ALS Biorepository Pilot Study:
- The biospecimen study component involves the collection of blood, urine, hair and fingernail clipping samples collected from 300 people with ALS in their homes. See ALS Biospecimen Fact Sheet.
- The postmortem study component involves the donation of brain, spinal cord, cerebral spinal fluid, and pieces of muscle, skin and bone from 30 people who had ALS. See ALS Postmortem Fact Sheet.
Only people with ALS who are enrolled in the National ALS Registry and who volunteer are eligible to participate in the study. Registration with the National ALS Registry is a brief process that can be done through the registry Web portal.
For more information or to volunteer for the pilot study, contact the National ALS Biorepository Study at (855) 874-6912.
For more information on the National ALS Registry, visit the National ALS Registry website, where you can find: National ALS Registry Fact Sheet; answers to Frequently Asked Questions; Quick Start Guide for people with ALS; information about how personal information is protected; and more.