I’ve long been a supporter of clinical trial participation, but I recognize that there is a flaw in the system, and it is time for a change. Even so, when the folks at the NIH asked me to speak about clinical trial participation, I was happy to do so. You can view my interview at right.
The first trial I was in ended abruptly after three years with a single posting on a website. None of the patient participants were notified about its ending. At the time, it was considered a scandal within the research community.
After the end of that first trial, about 575 of us were recruited for a follow-on trial. During my 6 years in the follow-on trial:
I had two SPECT scans
I had 6 annual neurological exams
I gave blood
I took 6 smell tests
My husband and I participated in the PROBE trial
I participated annually in the FOUND clinical trial
and more
I stumbled across a webinar titled, How Completed PD Clinical Studies Help Shape the Future. In it I learned that my data from the follow-on trial has been used to search for biomarkers in:
I see scientists and researchers sharing information with everyone except the members of their team who made it all possible: the clinical trial participants. Everything I have learned is from Internet searches — including the fact that the follow-on trial will not continue, due to lack of funding.
So to the PD scientific community, I say: "It is time for change. Clinical trial participants are not lab rats. We are not mute primates. If you want to enhance the recruitment and retention of clinical trial participants, then you need to treat us like the valuable members of the research team that we are. We entrust you with our lives, and all we ask in return is that you treat us with respect and dignity. When you share information learned from our data with scientists and researchers, include us. And yes, be sure to tell us when the clinical trial is going to end."
email us directly at: Sheryl@pdplan4life.com
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