The National ALS Registry: Get The Facts

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The National Amyotrophic Lateral Sclerosis (ALS) Registry enables persons with ALS to fight back and help defeat ALS (Lou Gehrig’s Disease). By signing up, being counted, and answering brief questions about your disease, you can help researchers find answers to critical questions.

Learn more at www.cy118119.com/als or (800) 232-4636

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Who can sign-up?

Anyone with ALS

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What do I need?
  • A computer with an internet connection
  • An email address
No computer?

Don’t worry! A family member, caregiver, or friend with a computer can help you. You can also contact your local ALS chapter, oce or clinic for registration assistance.

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What if I need help?

Caregivers and others can help you in person or even over the phone

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What kind of information is collected?
  • Basic demographics (e.g., age, sex, height, weight)
  • Military history
  • Physical activity
  • Family history
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Will my information be private?
  • YES! Only approved registry scientists can see it, NOT employers or insurers
  • You CANNOT be looked up in the registry by name
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Do I need to update my information?
  • YES! Every six months – you’ll get an email reminder
YOU JOINING =
  • More information for research
  • A better understanding of ALS
  • The chance to help create a better future for persons with ALS
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Page last reviewed: October 11, 2019
Content source: National Center for Environmental Health