ALS Bioregistry

Little is known about the role genetics plays in ALS. To help, ATSDR is considering creating a national bank of biological samples, also known as a “bioregistry.” These samples (e.g., blood, saliva, tissue) would come from PALS in the National ALS Registry who are interested in donating. Connecting samples to information already being collected from PALS will make this a more complete registry. Most important, a bioregistry may help scientists better understand the cause(s) of ALS.

In October, 2011, outside experts developed a plan for ATSDR to use to create a bioregistry. This plan will describe the best ways to collect, store, and share samples. When it is complete, experts will test the plan by gathering samples from at least 100 interested PALS. Once the testing is done, ATSDR will decide if a national ALS bioregistry is practical.

You can find more information about this proposed ALS bioregistry by clicking the links below:

The National ALS Registry: Bioregistry Announcement

ALS Bioregistry Announcement: ATSDR Sources Sought