May 6-8, 2011
Thanks for passing this information along to anyone who may be interested. This is a special kind of advocacy that has grown significantly every year.
Are you able to tell us how many patients have self-enrolled so far?
When is the earliest that we might know if the registry data challenge any of the prior assumptions about the incidence and prevalence of ALS in the U.S.?
Thank you very much.
Thank you for your interest in the National ALS Registry.
The Registry began allowing persons with ALS to self-register in October, 2010. Before any data can be released, ATSDR has to have at least 2 years of data in the Registry to be sure that the information is complete, accurate, and representative of all ALS cases in the U.S. Please check our website for updates on when data will become available.
If you need further assistance, please contact the Registry system administrator at ALSSystemAdmin@cdc.gov or call toll free at 1-877-442-9719 (9am-6pm ET).
The National ALS Registry Team