We don’t have exact numbers for clinical trial participation in PD but the most generous assumptions would put it at 10% (I think the number is more like 3%) of patients participate in some type of study in the course of their PD. Trial sponsors have very low expectations for the PD community – expecting only 1 patient per month per site. This compares with trials in some (not all) diseases where trials are filled in a matter of days. No matter which number you use, it is low and acts as a real disincentive for drug development in PD.

MJFF has been working in this area for the last 18mos to support recruitment for PPMI our large biomarker study which is now underway. If you happen to live near one of the investigational sites, you might have been to an education salon, or seen local media pieces, or some brochures, etc. This work has led us to expanding our efforts for clinical trial recruitment more broadly. We are in the process of preparing new tools and will be launching a public awareness campaign in the coming months. But, suffice it to say that the need is great (nearly 100,000 volunteers are needed for trials underway right now).

Michael Fox made a great point when we were working on publicity materials for PPMI…he said, as patients, we rely on so many smart and dedicated scientists to study, explore, hypothesize, investigate…and, after years and many dollars of investment, there is a time when something is actually really to be evaluated in a patient---this is the time, in fact the only time in the whole process, when the opportunity and burden fall solely to the patients. No one else can do it for us. If we don’t step up and raise our hand to participate, we can’t learn and we can’t get better treatments. Patients need to/can be part of their own solutions here.

Having said that, we are well aware that participation in trials comes with significant challenges. And, we know that trials aren’t for everyone by any means. We appreciate that some dedicated folks will never get involved in trials – that’s their choice. But, I think his message can be extended beyond clinical trial participation. Get involved. Do something that fits you. Be part of the action. There are many things patients can do. Get educated about the disease. Get to a movement disorders specialist. Support research. Raise awareness. Join Team Fox (shameless pitch!). Volunteer for a clinical study / trial --- by the way, not only are patients needed but healthy controls are needed too!

Debi