ALS Registry

Every person living with ALS in the United States can enroll in the National ALS Registry! The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. 

Most important, 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. 

Woman in wheelchair with a feathered hat

The ALS Association led the fight to establish the National ALS Registry by working with Congress to enact the ALS Registry Act and securing federal funding to design, build and implement the National ALS Registry at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR). 

We are now pleased to provide the ALS community with the tools and resources available on this site to help people with ALS enroll in the Registry and to assist the ALS community in sharing news about the Registry. 

National ALS Registry

"Why I Enrolled"

Learn the reasons ALS patients from around the country enrolled in the National ALS Registry—the single largest ALS research project ever created—and hear their compelling stories.
Computer screen of the ALS Registry enrollment page

Enrollment Instructions

These detailed instructions can guide people with ALS as they enroll in the National ALS Registry.
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Enrollment FAQ

Find answers about the National ALS Registry and the ALS Registry website, including enrollment.
Spread the Word!
Discover a number of tools and resources that you can use to educate yourself and others about the registry.