3rd Anniversary of the National ALS Registry

This October marks the third anniversary since the National ALS Registry first began collecting data on Americans living with ALS. Just in the last year, there have been some excellent additions to the Registry.

Through the Centers for Disease Control & Prevention's Agency for Toxic Substances and Disease Registry (ATSDR), the Registry is now collecting biological samples from people living with ALS to test pilot the creation of a bio-repository that will augment the survey data currently collected. Further, patients enrolled in the Registry can now receive alerts about new clinical trials that they may qualify for, making it easier for patients to be informed about the latest research in which they can participate.

Also, for those already enrolled, there will soon be new surveys to complete later this Fall, which will better inform researchers of the behavioral and environmental factors that may be associated with ALS. Additionally, the Registry is funding ALS research, including studies on the epidemiology of ALS, large-scale genome-wide association study of ALS, and gene-environment interactions in ALS.

In the past three years, thousands of ALS patients have self- enrolled in the Registry via a secure online web portal through the CDC. Click here for the website. It's easy and relatively quick.

If you require assistance with enrolling in the Registry or would like more information, please contact Christine Dunn in the Chapter office at (212) 720-3044.