After my Parkinson's diagnosis and facing a life with an incurable progressive disease, I turned to clinical trials as my way of fighting it. I joined my first trial within a few months of my diagnosis, and even though that trial failed, the data from it and its follow-up trials continue to provide new information to researchers.
In the US, 3-5% of people with cancer participate in clinical trials. And while the cancer community bemoans that low number, participation of people with Parkinson's (pwp) is even lower -- fewer than 1%.
What can we do to encourage more pwp to join the clinical research team and help us beat PD?
Written by
pdplan4life
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One of the problems with recruitment for trials is that many people are already onto drug regimes BEFORE they become aware of clinical trials. As many trials require 'de novo' patients, this is a real catch-22 situation. Information at point of diagnosis would be helpful, though there is the obstacle of arriving at diagnosis, and this is where I think we are different from many other conditions.
A combination of better diagnostics and the right information at the right time might help.
It is hard for a patient, just diagnosed, to agree to being in a clinical trial.
Sharing information with patients from the point of diagnosis has to be the way forward to improve recruitment......
Either this, or trial design that do not require 'de novo'......
I agree with Lindylanka. New trial designs involving those of us who have had a chance to come to grips with diagnosis is, simply for practical reasons, preferable to requiring participants be diagnosed but as yet unmedicated . I am afraid that to find large numbers of de novo participants it will be necessary to conduct the studies in the third world.
That brings up all kinds of ethical issues, not the least of which is when profit is the driving force and there are no monitors or regulations setting parameters outside of which corporations cannot operate, the stage is set for exploitation.
Yes we have the barrier of neurologists not informing pwp of clinical trials. Most neurologists have a knee-jerk reaction to put pwp immediately on meds, when the pwp could be offered the option of a clinical trial.
I wonder if computer-literate baby boomers, as they age might be more open to joining clinical trials? Will they be more comfortable searching the web trying to find alternatives to the present drug treatments? Will they consider clinical trial participation a viable alternative to help themselves, as well as the entire Parkinson's community? I can only hope so.
Not all clinical trials require de novo patients, but increasingly it seems like the most promising treatments do require this. It is very frustrating!
Interestingly I asked a neurologist in the US whom they would be looking for to participate in an upcoming GDNF clinical trial. He responded "stage 3 pwp because the FDA won't approve the trial for the newly diagnosed. They have other options."
I am enrolled on the EUROTRANS clinical trial involving possible stem cell transplant. I believe there is a centre in France but the trial may now be closed. There are websites which promote trials but I'll put a detailed comment in the topic response box.
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Sickening... we are paying for medication... to keep us paying for more medicatio. 
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