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Originally Posted by indigogo
pnschmidt -
Thank you for your reply and explanation. It sounds like a worthy goal and effort. I am wondering how or where we can find information about the registry - is it on the NPF site? Seems like this deserves more recognition and attention, but not many in the PD patient or organization community seem to be aware of it. Were patients included in the design process of the study/registry?
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We're piloting the project right now. The phase-I protocol was developed before I joined the foundation, and it did not include patient involvement in the study design. Still, much of the data is patient-reported, and so no one can succeed without engaging the patients (and caregivers) as stakeholders. Going forward, I have experience with projects at Kaiser Permanente where we launched several disease management protocols where patient input was integrated throughout the process, and I hope to bring that model to this project. Also, I've been involved in the Health 2.0 conferences and the participatory medicine group (led by e-Patient Dave) and am leveraging that experience in thinking about study designs. Perhaps we can accelerate this by including participatory medicine in our next research funding opportunity.
I'll make sure that we publish our preliminary results on our web site. A report is coming out in Parkinsonism and Related Disorders.