paula and I have PM'd a little bit and she has asked that I go public - I suppose to keep things from becoming boring
So-
<In reference to the database>
I think that too much is being made of imagined problems with it. It should be a simple matter to strip the identifiers from it (name, address, etc) and leave things like age, etc.
Do you know Joop Oele ?
He has some experience with this and has a form of it up and going in the Netherlands. I suspect that he has not been on NT lately or you would have heard from him.
If I were king of the forest, I would imitate PLM's approach of making a site that is attractive enough that patients would be willing to take the time to complete surveys and periodic updates and supplementals in return for admission. Not simply PD educational content, news, etc. That attracts people like us but we are the minority. Add entertaining things for those late night hours when we feel all alone. You don't have to create the content, just find it and link to it. Here is an example:
www.friv.com - 400 online games. Silly mind wasters. Perfect for the wee hours.
Work Skype into it too. Multi-use. Chat. Collaboration. Video or voice. Little workgroups on subjects like Ron's BBB could use it as could patients who want eye contact.
That takes care of the PWP end. As for the people who want the data, put it into three forms- an anonymous compilation that is posted and free under a Commons copyright where we must be credited. A second in the form of raw data stripped of ID for sale to researchers at a reasonable price to pay the bills. And a third for sale which includes contact info for PWP who select to make themselves availale to discuss their experience with the scientists. This latter group would be the doctors and scientists who have PD and scientific training.
But enough. I think I answered your question at the start and then went capering madly about. Sorry.
<Another option for paying the bills could be custom surveys for researchers of PWP who have indicated a willingness to do so.>