It's great to hear from Debi Brooks that MJFF are working on this type of project. I am an admirer of their work. The advantage that they have over me is that they are likely to get far more people involved than I can. So, I've offered both to collaborate with them and to let them use my software.
I'll be talking to one of their people on Monday.
The crucial questions are:
When are they going live?
What role will PwP play? We're a great resource. We know our needs. Our involvement needs to be more than just providing data.
How open is the data? To encourage as many people as possible to provide data it needs to be anonymous. To encourage as many people as possible to research the data, it needs to be open. For instance, every student of statistics in the world should have access to it. Who knows what they might find? One can envisage a time when, with enough data and sufficiently complex models, it is worth distributing the analysis, SETI-like, across the web.
(Incidentally, any software I write on
www.parkinsonsmeasurement.org, of which PDMeasure is part, is open. Anyone can use it for free.)
John