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 living with ALS (PALS). ATSDR is coordinating 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 will explore the feasibility of collecting and storing biological samples, such as blood or tissue, from PALS who are enrolled in the National ALS Registry and who volunteer 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. Once the pilot study has been completed, ATSDR will decide if a national ALS biorepository is practical.
How does the National ALS Biorepository Pilot Study work?
The pilot study enrolls PALS taking part in the National ALS Registry into one of two components:
- The biospecimen study component involves the collection of blood, urine, hair and fingernail clipping samples collected from 300 PALS in their homes.
- The postmortem study component involves 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?
For more information or to volunteer, please contact the National ALS Biorepository Pilot Study at 1-855-874-6912.
ALS Biospecimen Fact Sheet
ALS Postmortem Fact Sheet
Participating in the National ALS Biorepository Pilot Study is voluntary. Only PALS who are enrolled in the National ALS Registry are eligible to participate in the study.
McKing Consulting Corporation is conducting the National ALS Biorepository Pilot study on behalf of ATSDR and may be contacting PALS about participating.