ALS Registry

The National ALS Registry may be the single largest ALS research project ever created. It is designed to identify ALS cases from throughout the United States. The Registry is collecting critical information about the disease that may improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented.

Learn more about the National ALS Registry today, and find out how this research can help, including by informing people living with ALS about new and ongoing clinical trials.

Enrollment Instructions

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Click the "Join ALS Registry/Create Account" link located on the center of the Nationals ALS Registry homepage.


Click the “Join ALS Registry/Create Account” button located at the bottom of the ALS Patient Account Box.


Read the Account Notification Consent Form. If you agree, click the "I Agree" button located at the bottom of the Account Notification box.


Answer ALS patient validation questions. Click the "Next" button to proceed to the next question. Answering these questions verifies your eligibility to participate in the registry.


Read the National ALS Registry Consent Form. Clicking on the "I Agree" button means that you consent to participating in the registry. Note: You can withdraw from the registry at any time.


Fill in all of the required fields located on the ALS Patient Account Page. All required field are marked with a red asterisk (*). Remember your user name and password. You will need these to log into the registry to retrieve or update information. Click the "Submit" button located at the bottom of the ALS Patient Account box. When you have successfully joined the registry, you will see a green box that says “Registration Completed….”


Click the "Return to Login" link located at the bottom of the “Registration Completed” box. This will take you to the registry login page.