Amyotrophic Lateral Sclerosis Registry

Amyotrophic Lateral Sclerosis Registry

What is Amyotrophic Lateral Sclerosis (ALS)? 

ALS, also known as Lou Gehrig’s disease, affects the nerve cells that make muscles work. The disease makes muscles weak and eventually stop working, which causes paralysis. Currently, no one knows what causes ALS. 
 

National ALS Registry 

What is the National ALS Registry

The National ALS Registry collects, manages, and analyzes data about people with ALS. The information comes from existing national databases and from people with ALS who choose to participate. Researchers can use the data to look for disease patterns and changes over time to find common risk factors. Visit the National ASL Registry on the CDC website.

Data Privacy and Use

Patient data are encrypted, and personal identifiable information is secured. Information published about the registry will not include personal information. Only group information to describe the characteristics of people with ALS will be shared. More privacy and use details are in the National ALS  Registry’s Frequently Asked Questions. 

How Can I Participate?

People with ALS can join the registry by giving their information to the National ALS Registry.  By signing up, being counted, and answering brief questions about you and your disease, you can help researchers find answers to important questions. You can also choose to receive emails about clinical trials and epidemiological studies. 

Who can join the National ALS Registry?

The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States. 

National ALS Registry Resources

Visit the National ASL Registry on the CDC website.

Have questions about the National ALS Registry? Read the National ALS Registry’s Frequently Asked Questions.

Looking to contact the CDC? CDC contact and information page.

 

What is Vermont Doing?

As described in Act 149 (2022), the Vermont Department of Health will establish, maintain, and operate a statewide ALS registry as of July 1, 2023. Healthcare providers who diagnose or treat ALS patients will report all individual cases to the Vermont Department of Health.  

While the Vermont ALS registry will begin in July 2023, the Vermont Department of Health encourages people with ALS to join the National ALS registry. 

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