Are You Signed Up For The ALS Registry?

If you're a PALS (Person with ALS), you should know about the National ALS Registry. Many have already enrolled, but if you haven't, we hope you'll take these remaining summer months to do so.

The National ALS Registry is a program begun by Congress and run through the Centers for Disease Control and Prevention to collect, manage, and analyze data about PALS. The more people enrolled with the Registry, the more data will be collected, and the more accurate the information will be for researchers to analyze specific areas on which to focus, that could lead to an effective treatment and eventual cure for ALS.

How do you enroll? If you have a computer, it is easy to enroll with the National ALS Registry. A PALS, with the help if a caregiver if needed, can visit www.cdc.gov/ALS to get started. Questions will be asked about health, job, family history, military service. Initial enrollment could take 10-20 minutes and filling out additional survey could take as little as an hour. All the information collected is confidential, with only researchers of the CDC's Agency for Toxic Substances and Disease Registry (ATSDR) able to access that information, which would not have names along with it.

While the National ALS Registry works to provide information for researchers, it also is there to help you not only contribute amazing awareness for the disease, but to additionally provide opportunities for you to participate in clinical trials. New features in the last year allow PALS to contribute to a biorepository which collects samples of hair, blood, nails, and other resources that will provide researchers with even more data to identify the disease's commonalities.

Hear what three area PALS who've already enrolled, have to say about their experience:

“I will do anything I can do to find a cure for this condition. People came and took hair, nail, and blood samples. It was easy, plus it’s been good to touch base with others about the disease.” - Jane B., Ho Ho Kus, NJ

“I registered to try to raise awareness of the disease so people in Washington will understand and hopefully they’ll work toward moving drugs along faster so we can someday cure ALS. They need to change their research methodology and this can help.” - Michael Z., Wayne, NJ

“The Registry was very helpful with their resources and knowledge. I think this will spread more awareness and help, that they’ll start to find the cure. I also don’t feel alone in my hope.” - April S., Walden, NY

If you have questions about the National ALS Registry, please contact Manager of Communications & Public Policy Daryl Cochrane at (212) 720-3051 for assistance. Knowledge is power and with your help we can find a cure for ALS.