National ALS Registry

The National Amyotrophic Lateral Sclerosis (ALS) Registry allows people with ALS to get involved in research and help future generations. Research today may lead to a better understanding and potential treatments tomorrow. By signing up for the National ALS Registry, being counted, and taking risk factor surveys, people living with ALS can help find answers.

How you can take part

    2. Complete the Registry risk factor surveys and tell your story
    3. Donate specimens to the National ALS Biorepository
    Clinical trials
    4. Learn about clinical trials & research studies

    Registry Goals

    The federal Agency for Toxic Substances and Disease Registry (ATSDR) established the National ALS Registry in 2010 to collect and analyze data about people living with ALS in the U.S. Its purpose is to gather data to better understand ALS. The information is used 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

    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, from 8am-5pm ET) or email: 

    Visit the National ALS Registry website to learn more.

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    The Les Turner ALS Foundation works with the National ALS Registry by helping raise awareness.

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