Hi Bobby,

I wanted to respond to the question you e-mailed to the Virtual Advocacy
Community regarding the ALS registry and people who carry the SOD1 gene.
The registry would track people carrying the SOD1 gene. Although all of
the data elements are not finalized (the Registry Act calls for
recommendations from the ALS Registry Advisory Committee), this is
information that would be captured by the registry.

I also wanted to let you know that to some extent the SOD1 database,
which is supported by ALSA, the NINDS repository, and specific
individual researchers currently track people with the SOD1 gene.

I hope this is helpful to you and please don't hesitate to contact me if
you have any questions or if I can be of any assistance to you.

Thanks,
Pat


Patrick Wildman
Director, Communications and Public Policy
The ALS Association
601 Pennsylvania Ave., N.W.
Suite 900, South Bldg.
Washington, DC 20004
ph: (202) 638-6997
Toll-free: 1-877-444-ALSA
fax: (202) 638-6316
e-mail: pwildman@alsa-national.org