The National ALS Registry and Biorepository is the single largest ALS research project ever created and designed to identify ALS cases throughout the entire United States. Created in 2009, the Registry collects critical information about the disease that will improve care for people with ALS and help researchers learn what causes the disease, how it can be treated and prevented.
From my point of view, there really is no downside to joining the CDC ALS Registry. However, there are many many good reasons to join. One of those reasons being to contribute to research that will help all people living with ALS, now and in the future.Chip Carton, Person Living with ALS
Chip Carton joined the ALS registry several years ago, after Chapter Director of Care Services, Marie Folino, MSW, LSW had mentioned it to him.
Since then, Chip has donated blood, participated in a drug trial, and completed countless surveys through the registry to continue to further ALS research at the national and international level. In addition, he even starred in the CDC’s “Why I Enrolled” video below.
When asked why he joined the Registry, Chip said
The ALS Registry is a great road to travel to find information…and they share all information and study data with The ALS Association National Office. I hope that doing this helps us in our battle to defeat ALS and provides a better future for people with this horrible disease.
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 where you can sign in.
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. You can also call the Chapter for more assistance at 412-821-3254.