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  • Home
  • Get Started
    • About ALS
    • Newly Diagnosed
    • People with ALS
    • Veterans with ALS
    • Caregivers
    • Family & Friends
    • Research & Treatment
  • Planning
    • Health Insurance
    • Employment
    • Medical Decisions
    • Care
    • Advance Directives
    • ALS Nutrition
    • Transportation
    • Home Modifications
    • Travel
  • Equipment
    • Overview
    • Braces
    • Home & Daily Living
    • Bathroom
    • Mobility
    • Respiratory
    • Communication
  • Resources
    • Support Services
    • ALS Clinics
    • Support Groups
    • ALS Registry
    • Get Involved
    • Resource List
    • Glossary
  • About
    • Our Story
    • Myna's Story
    • Our Team
    • Newsletter
    • Contact Us

The National ALS Registry


The National ALS Registry is a database that collects information from volunteers with ALS in an effort to help scientists learn more about the disease and work toward a cure.

In 2008, Congress passed the ALS Registry Act, which provided funding for the Centers for Disease Control to develop and operate the registry.
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The registry gathers information that can be used to:

  • estimate the number of new cases of ALS each year
  • estimate the number of people who have ALS at a specific point in time
  • better understand who gets ALS and what factors affect the disease
  • examine the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS, and
  • improve care for people with ALS.​

​You can help make a difference by enrolling and filling out the short survey. The information you submit goes into a secure database and will only be displayed as group information. Once enrolled, you can also choose to receive information such as drug trial notifications and current research news.
Enroll Now

National ALS Biorepository

The National ALS Biorepository is part of the National ALS Registry. In addition to filling out the survey, interested volunteers can provide blood, urine, tissue, cell, DNA, and protein samples for scientific research.

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Get Started

About ALS
​Newly Diagnosed
People with ALS
Veterans with ALS
Caregivers
Family & Friends
​​Research & Treatment

Planning

Health Insurance
Employment

Medical Decisions
Care

Advance Directives
​
ALS Nutrition
Transportation

​Home Modifications
​Travel

Equipment

Overview
​
Braces
​Home & Daily Living
Bathroom
Mobility
Respiratory
Communication​

Resources

Support Services
ALS Clinics

Support Groups
​ALS Registry
​Get Involved
Resource list
​Glossary

About

Our Story
Myna's Story
​Our Team
Newsletter
​Contact Us
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