ALS Biorepository Pilot

Little is known about the role genetics play in ALS. In order to find out more, researchers need biological samples like blood or tissue from persons with ALS (PALS). ATSDR coordinated a feasibility study called the National ALS Biorepository Pilot Study to find the best way to collect and store these samples.

What is a biorepository?

A biorepository is a national bank of biological samples like blood or tissue. The National ALS Biorepository Pilot Study is considered the first step toward creating a bank of ALS biological samples associated with the National ALS Registry.

What is the National ALS Biorepository Pilot Study?

The National ALS Biorepository Pilot Study explored the feasibility of collecting and storing biological samples, such as blood or tissue, from PALS who enrolled in the National ALS Registry and who volunteered to participate in the pilot study.

The National ALS Registry helps persons with ALS and researchers learn more about the disease. Connecting samples to information already being collected from PALS will make the Registry more complete. A biorepository may help scientists better understand the cause(s) of ALS by providing researchers with access to ALS biological samples. These samples may be studied along with demographic and other environmental and occupational data currently being provided by PALS.

With help from outside experts, ATSDR developed a plan for creating a biorepository. This plan describes the best ways to collect, store, and share biological samples. The pilot study has been completed and ATSDR has decided a national ALS biorepository is practical.

How did the National ALS Biorepository Pilot Study work?

The pilot study enrolled PALS taking part in the National ALS Registry into one of two components:

• The biospecimen study component involved the collection of blood, urine, hair and fingernail clipping samples collected from 300 PALS in their homes.
• The postmortem study component involved the donation of brain; spinal cord; cerebral spinal fluid; and pieces of muscle, skin, and bone from 30 PALS after they have died.

How can I learn more?

The pilot study is complete and we are no longer taking volunteers.

What’s next?

We have decided to include a National ALS Biorepository as a part of the National ALS Registry. There will be alerts when the Biorepository is launched. If you have any questions please contact the National ALS Registry at 1-800-232-4636.