Feb 17 2011

On and Off Tracking

Published by under on and off tracking

I am the sister of a young onset PWP who has had terrible issues with the on/off cycle. She and I wrote a PD log to help her see what was really happening on a day to day/hour to hour basis. We want to make it available free to the community. There is no cost, we ask for no personal information. I’m hoping you will help me let people know this app is available. People can demo it at www.datadrivenhealth.org. They don’t even have to use their real name! Thanks so much!

Meg

The following are the answers to followup questions that Meg answered about the tracking program:

What an interesting program! Will this always be available to people for free or at some point will there be a subscription required?

It will always be free! PWP have quite enough to worry about on the financial side, as I well know.

Who paid for the design of the system?

I spent 14 years as the Executive Director of a regional parkinson foundation in Kansas City.  During that time I developed a large network of people who were engaged in the fight against PD – among them folks who donated much of their time and expertise to help me develop this site. What wasn’t donated, I paid for myself.  I have plans for other sites along this line – for DBS, restless legs and that sort of thing.

What happens to the data that are collected – who sees it and what happens to it?

As to the data we are collecting, at this point there are no plans for it.  My hope is that if enough people contribute, we will perhaps learn something important about on/off cycles.  We added that after looking at sites like “Patients Like Me,” as we came to understand the great humanitarian value of collective data.

Check out the program if you are currently taking medications and realize there is significant value in monitoring your on and off times.

www.datadrivenhealth.org

Robert Rodgers, Ph.D.
Parkinsons Recovery

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