These detailed instructions can guide people with ALS as they 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.
Open your web browser and go to http://www.cdc.gov/als.
Print Instruction Guide
How to Join the National ALS Registry
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.
How to Login into the National ALS Registry
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.
Type your Password into the “Password” field located in the Login box. You created this same password when you first joined the registry.
Click the "Login" button located at the bottom of the Login box.
How to take an Available Survey on the National ALS Registry
Click the "Available Surveys" link located at the top of the Surveys box on the ALS Patient Account Page.
To view instructions for the Surveys, click the "General Instructions" link located above the Survey box on the ALS Surveys homepage.
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 the CDC at 877-442-9719 Monday-Friday between 9 a.m.-6 p.m. ET.