National ALS Biorepository
What is the National ALS Biorepository?
The term biorepository usually refers to a facility that collects and stores samples of biological material. These samples could include blood, urine, tissue, cells, DNA, and proteins. Some medical data may also be stored along with a written consent form. These samples may be used for future research.
The National ALS Biorepository is part of the National ALS Registry. This Biorepository will include samples from persons with ALS (PALS) who are enrolled in the National ALS Registry. ATSDR developed a plan for creating this Biorepository with help from external experts. This plan describes the best ways to collect, store, and share biological samples. PALS must give their consent to take part in the National ALS Biorepository.
This Biorepository may help scientists better understand the cause(s) of ALS. Researchers may be able to study the genetic variation in those with ALS. Analysis of these types of specimens has already proven useful in finding important genes related to ALS and other motor neuron diseases. The National ALS Registry collects epidemiological data from PALS. Connecting biological samples with these data will make the National ALS Registry more complete and useful.
How does this differ from the Pilot Study?
The National ALS Biorepository Pilot Study ended in 2015. This 4-year pilot study was done to see if it was possible to collect biospecimens nationwide and to recover postmortem tissues.
ATSDR has determined that a national ALS biorepository is feasible. The National ALS Biorepository differs from the National ALS Biorepository Pilot Study because it is now a permanent component of the National ALS Registry. Some changes were made based on the Pilot Study. For example, we will only collect specimens one time from each person. In the Pilot Study, we collected specimens two times six months apart. There are no changes to the postmortem component of the Biorepository. Specimens from the Pilot Study will become part of the National ALS Biorepository. In addition, researchers will be able to request samples from the National ALS Biorepository to conduct research in the future.
How does the National ALS Biorepository work?
You must be enrolled in the National ALS Registry to take part in the Biorepository. After an individual has joined the Registry, he/she will be able to ask for more information about the Biorepository and provide his/her contact information.
Specimens that may be collected for each component of the Biorepository are below.
- The biospecimen (in-home) part involves the collection of blood, urine, hair and fingernail clipping specimens collected from PALS in their homes.
- The postmortem part involves the donation of brain; spinal cord; cerebral spinal fluid; and pieces of muscle, skin, and bone from PALS after they have died.
PALS providing specimens along with the information already collected in the Registry will help make the Registry more complete. Providing specimens may help scientists better understand the cause(s) of ALS by providing researchers with access to ALS biological samples.
How can I learn more?
Please click the PALS information or Researcher information button below to get more information about the National ALS Biorepository.
PALS Biorepository Information
Researcher Biorepository Information
What if I have questions?
If you have questions about the National ALS Biorepository please call 1-855-874-6912 or email questions to firstname.lastname@example.org (Monday through Friday from 8:30am to 5pm ET).
If you have questions about the National ALS Registry please call 1-877-442-9719 (Monday through Friday from 8am to 5pm ET).