I think patient databases, on-line testing, patient-led clinical trials, with open access to all data, could help play a useful part in "defeating" Parkinsons.
We discussed this last year in the "What do we do next?" thread:
http://neurotalk.psychcentral.com/thread153848.html
To get things off the ground I started a web site:
http://www.parkinsonsmeasurement.org
We ran one survey, the Handedness Survey, which looked at the relationship between whether a person was left or right handed and the side that PD symptoms first started. See:
http://www.parkinsonsmeasurement.org...s/protocol.htm
Unfortunately, we only got 90 replies - about half from this forum and the other half thanks to Laura (Conductor71) from other fora.
I wouldn't say never again, but I don't see surveying as a priority now. This is partly because of similar efforts by a number of other organizations: Parkinsons Movement, 23andme, PPMI. (One thing to watch for is whether all the data is accessible.)
Crucial to any assessment of progression is objective testing. If this is done at the computer and without extra equipment, so much the better. I've written two tools:
Side-to-side finger taps:
http://www.parkinsonsmeasurement.org...eToSideTap.htm
Tremor measurement:
http://www.parkinsonsmeasurement.org/toolBox/tremor.htm
The trickiest area, but the one with the greatest potential benefit, in my opinion, is patient led clinical trials. Some things, those which are probably safe in moderation, e.g. tumeric, lend themselves to this. Others, such as DIY DBS, would not be suitable. If we all worked together, we could get answers quickly. However, before going ahead with this I would want to make sure that any legal issues were resolved.
As a next step, I wonder whether we could agree on a protocol for white ratting. It would be useful if we could report along these lines:
Day 1 Baseline, metric A=123, metric B=234.
:
Day 10 Baseline, metric A=123, metric B=234.
Day 11 Trial, metric A=123, metric B=234.
:
Day 20 Trial, metric A=123, metric B=234.
John