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. The Registry is collecting critical information about the disease that may improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.

Obtenga más información sobre el Registro Nacional de ELA en español aquí.

Learn more about the National ALS Registry today, and find out how this research can help, including by informing people living with ALS about new and ongoing clinical trials. Click here for more info on The ALS Association national website.

The ALS Association led the fight to establish the 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). More information on the CDC ALS Registry can be found here.

We’re pleased to provide the ALS community with the tools and resources to help people living with ALS enroll in the Registry and to assist the ALS community in sharing news about the Registry.

Why It Matters

The National ALS Registry and Biorepository was created to help understand how prevalent ALS is, who is developing ALS, and what the possible causes are.

"Why I Enrolled"

Learn the reasons people living with ALS from around the country enrolled in the National ALS Registry—the single largest ALS research project ever created—and hear their compelling stories.

Enrollment Instructions

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

Enrollment FAQ

Find answers about the National ALS Registry and the ALS Registry website, including enrollment.
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