Patients database
 

Now this is what I was talking about a few days ago:

http://www.nature.com/nbt/journal/v2.../nbt.1837.html

People with parkinson all over the world could put data in a database containing their age, when diagnosed with PD, meds taken with their dose, supplements taken, monthly PD score ... and then people specialized in informatics could use this data and apply statistical machine learning techniques to determine which agents are neuroprotective and which ones not.

I just found out patientslikeme has all this data for all their patients.

I had a look for patients using rasagiline, isadiprine, ... to see whether I could see some obvious signs of neuroprotectiveness of these meds. I have to say it really is a mess. Every patient has a complete different progression graph. Some patients have slow progression almost without any medication, others take a lot of meds and progress fast, others take meds and progress slowly, ... I really wonder how clinical trials can say anything at all about disease progression. As long as there are no biomarkers, all these clinical trials are a waste of money.

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

Somebody help me with this...
 

I have a crude database set up with a form to enter this data. How do I post this to the internet?

Bump
 

bump maybe somebody can help.

Jim, maybe you are in the wrong forum to ask for this kind of help. You might consider to find help in a IT related forum ?

IT
 

Yes I have a post on the IT forum, thought I'd put one here in case anyone knew how to do it. Thanks.

It would be cool if you could make this database for the MJ Fox Foundation. Maybe MJ Fox could invest in keeping this database up to date with data from patients all over the world.