National Amyotrophic Lateral Sclerosis (ALS) Registry
Join the National ALS Registry!
Every person living with ALS in the United States can enroll in the National ALS Registry. Launched in 2008, the National ALS Registry is the only government entity currently looking at what causes ALS. The Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. So far, approximately 20,000 people with ALS have enrolled and the Registry has assisted with over 70 clinical trials.
Most importantly, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented. When you join the National ALS Registry, you provide crucial data that drives us closer to understanding and treating ALS.
After you register, log-in to take up to 18 Risk Factor surveys. These surveys are invaluable to researchers as every piece of data helps them better understand ALS and its possible causes. Data is always shared securely.
The Registry does a lot more than count ALS cases — it is a multi-faceted research platform that comprises:
- Research
- National ALS Biorepository
- Epidemiology
- Partners
- Survey data
- Information on how to get involved with research opportunities
Learn More About Research at the Registry
- Learn more about the National ALS Registry / Obtenga más información sobre el Registro Nacional de ELA en español
- Read the latest ALS research publications - There are currently over 100 articles published and available to the public.
More Ways to Engage
- Sign up for the quarterly Registry newsletter - Stay informed of clinical trials and ALS research!
- Donate samples at no cost to the National ALS Biorepository - the Biorepository is one of several resources available for use by researchers, allowing them to pursue additional avenues of ALS research. Data is always shared securely.