Rick -

Personally, I think that including information, data, and surveys on White Rat activities would be great - I think the common denominator for inclusion in a "patient voice" project are things that patients are passionate about, but feel are not being heard by or made available to people and orgs who might be able to help (along with galvanizing the patient voice to influence projects that are already being pursued by the orgs).

Have you communicated with PerryC? I'm thinking you guys should find out if there is overlap in your concepts and if collaboration is beneficial. If not, then plan what you want for whatever it is that emerges here. This is the link on "electronic registry in medicine" where Perry and Paula have started to discuss the possibilities http://neurotalk.psychcentral.com/thread51753.html

I hope that whatever we design, it will link to other patient-driven projects such as the one that Perry is trying to get off the ground. I think that Perry's project is so specific, and requires its own funding and staff, that it is something that needs its own home. But it also needs patients who want to help move that effort forward. We need to promote all efforts that benefit patients.

(Perry - I didn't see your post below mine until after I posted this. I hope it answers some of your questions about how I personally look at the structure. But, yes, I think we need a lot more discussion on the whole shebang; that's why we keep this thread and conversation going!)