The ALS Association

National ALS Registry Enrollment Instructions

Enroll in the ALS Registry

Below you will find detailed instructions on how people with ALS can enroll in the National ALS Registry.  We encourage you to print and share this information, use it to guide your own enrollment or to assist others.

How to get to the National ALS Registry

Open your web browser and go to http://www.cdc.gov/als.

How to Join the National ALS Registry

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

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

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

Step Four: 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.

Step Five: 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.

Step Six: 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 ….”

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

How to Login into the National ALS Registry

Step One: Type your Username in to the “Username” field located in the Login box. You created this same user name when you first joined the registry.

Step Two: Type your Password into the “Password” field located in the Login box. You created this same password when you first joined the registry.

Step Three: Click the "Login" button located at the bottom of the Login box.

How to take an Available Survey on the National ALS Registry

Step One: Click the "Available Surveys" link located at the top of the Surveys box on the ALS Patient Account Page.

Step Two: To view instructions for the Surveys, click the "General Instructions" link located above the Survey box on the ALS Surveys homepage.

Step Three: To take a Survey, click a Survey Number or Survey Name located in the Survey column on the Surveys homepage.

Should you need help registering, please call us at 877-442-9719 Monday-Friday between 9am-6pm ET.

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