The National ALS Registry

The National Amyotrophic Lateral Sclerosis (ALS) Registry gives people with ALS the opportunity to get involved in research and help future generations. Research today can lead to a better understanding of the disease and potential treatments tomorrow. By signing up for the National ALS Registry, being counted and answering survey questions, people living with ALS can help find answers about who gets the disease and what they have in common.

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

Registry Goals

The Registry is used to collect and analyze data about people living with ALS in the U.S. to:

  • Estimate how many new cases of ALS are diagnosed each year.
  • Estimate how many people are living with ALS.
  • Better understand who gets ALS.
  • Better understand what factors affect the disease.
  • Enhance research to find the cause(s) of ALS.

How to Take Part

icon   1. Join the National ALS Registry. 

 icon   2. Complete the risk factor surveys and tell your story.

 icon   3. Donate samples to the National ALS Biorepository.

 icon   4. Learn about clinical trials and research studies.

Join Now

Who to Contact

If you are having problems logging into the National ALS Registry website, you can contact the system administrator by phone (1-877-442-9719, 8 a.m.–5 p.m. ET) or by email ( Visit the National ALS Registry website to learn more.

Spread the Word!
The ALS Association works with the CDC to help raise awareness about the National ALS Registry – and so can you!
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