What is Amyotropohic 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.
Vermont ALS Registry
As described in Act 149 (2022), the Vermont Department of Health operates a statewide ALS registry. Healthcare providers who diagnose or treat ALS patients must report all individual cases to the Vermont Department of Health.
Researchers or data analysts may fill out the online request form to request data from the ALS registry.
National ALS Registry
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
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.
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.
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.
The National ALS Registry is open to all people with ALS who are citizens or legal residents of the United States.