Quote:
Originally Posted by soccertese
that's another problem with getting fda approval, the difficulty in measuringpd symptoms. no lab tests, for drugs treating symptoms it's all subjective. thus for small diffferences you need a lot of subjects, very tough to do.
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That plus Laura's quote:
"Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?"
My reply: MJFF is currently recruiting patients for their Parkinson's Progression Markers Initiative (PPMI), a 5 year study to collect data that hopefully will discover biomarkers that can be tracked to objectively measure disease progression and be targeted for drug development. This should also go a long way in determining the nature of the disease itself.
Read all about it here.
There are 18 sites worldwide; all are in the process of obtaining IRB approval, and will begin active recruitment within the next few weeks and months.
They are seeking newly diagnosed, along with PD-free controls, and will be mounting an education campaign to recruit newbies. MJFF is learning a lot about the business of clinical trial recruitment in general in this process, and, I believe, will be doing more of this kind of thing in the future.
MJFF is having a PPMI community education event in Seattle later this month at the University of Washington. Please PM me for more information.
There is no doubt in my mind that the greatest minds we know who research PD are well aware of the concerns raised in this forum regarding the reality of the disease itself. They understand that the failure of recent clinical drug trials may be the result of a participant pool that represents different diseases. I know that MJFF is listening to patients, and that many of the scientists are as well. We are no longer just whistling in the wind; keep posting and keep the discussions going!