MDA-Funded ALS Registry Now Online

An MDA-supported ALS registry, seeking to collect and examine data from thousands of people with ALS, is now open on the Internet at www.alsconnection.com. Its data will be used to help determine risk factors for ALS, as well as which interventions are beneficial and which educational approaches are best.

“This is an opportunity for all patients to participate in ALS research and enter their data into a national registry, even if they are not at one of the large centers that currently is active in ALS CARE,” said Robert Miller, a neurologist who heads the Forbes Norris MDA ALS Center at California Pacific Medical Center in San Francisco.

The ALS CARE database (see: www.outcomes-umassmed.org/als/), sponsored by Sanofi-Aventis Pharmaceuticals, has been collecting similar information since 1996 and has enrolled some 6,000 patients. However, it’s paper-based, while the ALS Connection is Web-based; and it operates mainly through the largest ALS centers in the United States, while the Connection is aimed at people getting care for ALS anywhere in North America. Miller is an adviser to both registries.