Amyotrophic Lateral Sclerosis Registry | Vermont Department of Health
Source: http://healthvermont.gov/stats/registries/amyotrophic-lateral-sclerosis-registry
Archived: 2026-04-23 17:22
Amyotrophic Lateral Sclerosis Registry | Vermont Department of Health
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Amyotrophic Lateral Sclerosis Registry
Registries
Amyotrophic Lateral Sclerosis Registry
Birth Information Network
Cancer Registry
Immunization Registry
Request Vaccine Records
Vermont Prescription Monitoring System (VPMS)
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.
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.
Submit a Case: ALS Reporting Form
Researchers or data analysts may fill out the online
request form
to request data from the ALS registry.
ALS Registry 2026 Report to the Legislature
Annual report to the Vermont legislature that provides updates on ALS data collection in Vermont.
View report.
Past Reports
2025 Report to the Legislature
2024 Report to the Legislature
National ALS Registry
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
.
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.
Contact Us
Contact the ALS Registry Coordinator
[email protected]
Last Updated:
February 18, 2026
Skip to main content
MENU
x
CLOSE
Translations for you
Amyotrophic Lateral Sclerosis Registry
Registries
Amyotrophic Lateral Sclerosis Registry
Birth Information Network
Cancer Registry
Immunization Registry
Request Vaccine Records
Vermont Prescription Monitoring System (VPMS)
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.
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.
Submit a Case: ALS Reporting Form
Researchers or data analysts may fill out the online
request form
to request data from the ALS registry.
ALS Registry 2026 Report to the Legislature
Annual report to the Vermont legislature that provides updates on ALS data collection in Vermont.
View report.
Past Reports
2025 Report to the Legislature
2024 Report to the Legislature
National ALS Registry
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
.
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.
Contact Us
Contact the ALS Registry Coordinator
[email protected]
Last Updated:
February 18, 2026