Jean said:
"I'd say there is consensus that the people posting on this board want to do something. And consensus that one or more databases is also what the group wants to do"

Paula said:
"My feeling is that there is a need for more than one database and that the email database could get up and running quickly. So hopefully a poll with these questions that will take anonymous voting will be up today, including how to handle the email database that will likely get going right away. People can work on whichever they like or both."

Sounds like consensus for at least two kinds of data bases. One, an email list for advocacy. Two, a more detailed collection of medical data.

Then there is the third concept to be discussed: What is the platform that will host the databases? This relates to Tom's comment:

"All I was saying about the regional committees is that anyone can start off a database and these could feed into the main. That way if anyone feels they want to use data in a specific way for more local purposes, they could set up their own regional database which could feed into the main one. That way you have regional "ownership" without compromising the integrity of the main database. We could have a section on the website entitled "start your own database."
This is using the power of the internet in a simple but highly effective way.
Any good?"

I'm kind of a big picture person. My bias is showing in my preference for the simplest database; I don't want to go near anything more complicated. But obviously there is a need for something more complicated, and the goal is to be as flexible as possible; I really like Tom's working concept of the many feeding into the one. It looks like a river system flowing to the sea.

Maybe we need two or three (?) consecutive efforts to keep things going: one, people who want to work on the platform and overall concept (my personal choice) and those who want to work on database details. This last can be either one or two groups; email advocacy and/or more detailed statistical information. And anyone out there who wants to contribute to one or more of these efforts, please feel free to join in!

LATER ADDITION: My overall concept: Design a website platform where people can sign up to be members; this creates the email database. The website can run surveys and have news, plus link to forums like this where thoughtful discussion on topics of interest to patients is occurring. Once a member of the group, you will have the option of becoming more involved in other data gathering around symptoms, treatment, or other interests the group comes up with on a regional or global basis.