The National ALS Biorepository: Donating Samples for ALS Research

The Agency for Toxic Substances and Disease Registry (ATSDR) runs the National ALS Biorepository as part of the National ALS Registry. It lets Registry participants donate samples for research and makes them available to approved ALS studies.

What a biorepository is

A biorepository collects and stores biological samples — blood, urine, tissue, cells, DNA — sometimes with information about the donor and a signed consent form, for future research.

This one

• Who: people living with ALS (amyotrophic lateral sclerosis) who are enrolled in the Registry, and who consent.
• Designed by ATSDR with outside experts on the best ways to collect, store and share samples.
• Why: samples may help scientists find the causes of ALS and study genetic variation in people with the disease; such specimens have already helped identify important genes in ALS and other motor neuron diseases. Linking samples to the Registry's epidemiological data makes the Registry more complete and useful.

How it works

You must first be enrolled in the National ALS Registry; members can then ask for information and give contact details.

Getting involved

• Registry members: log in to enroll in the Biorepository.
• Not yet registered: join the Registry to take part in research or contribute information — or just read its educational material without an account.
• Questions: the Biorepository and the Registry each have a help line, listed on the original page.

Sources

Based on "About the National ALS Biorepository" (November 11, 2024), Agency for Toxic Substances and Disease Registry; a work of the United States government in the public domain. A stock photograph is left out.