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Two Sides of the Coin: A Conversation with a Clinical Trial Participant and Clinical Research Director

Clinical research participation holds the potential to move the needle towards a cure. Unfortunately though, we’re up against challenges and roadblocks such as recruitment, enrollment and positive experiences and outcomes. Both people with Parkinson's disease (PWPs) and the medical teams who run trials are often thinking about how to change the overall perception of clinical, as well as optimize the experience and outcomes from trials for the benefit of the millions of people living with Parkinson’s disease.

With Parkinson’s Awareness Month just around the corner, we spoke with PWP Jean Burns, a dedicated advocate and clinical trial participant, of Chicago, Illinois, and Danna Jennings, MD, clinical research director at the Institute for Neurodegenerative Disorders, in New Haven, Connecticut, for their complementary perspectives on this critical topic.

Jean Burns: We are all part of a community — we have to be active in working together to find the cure. Where we are today in research and the progress we’ve made is thanks to others’ participation in past trials. Without that, we’d be stuck at square one.

Danna Jennings: As a neurologist and researcher currently leading several clinical studies, I am responsible for recruiting participants into clinical trials.  Our research center recruits patients through multiple mechanisms, including presentations to the local patient and physician community. Trial sites deal with many challenges in recruiting… until now they have not had a tool to effectively leverage the power of the Internet to identify, communicate with and recruit patients.

JB: That rings true. In my nine years of clinical trial participation, I have often found myself to be the forgotten member of the clinical trial team. More than one trial I have been in has ended without my being informed. And no study group has ever told me how data from my participation is being used.

DJ: When Fox Trial Finder launched in July, I was interested to see how the patient community would respond and if it might improve the rate of recruitment into Parkinson’s disease (PD) trials. Within the first few weeks, several potential volunteers contacted us and we were able to enroll two trial participants! Since the early days of launch back in July it has become clear that FTF is a great resource for PD patients interested in research.

JB: From a patient perspective, I am very impressed. When I speak about clinical trials, I use the Parkinson’s Progression Markers Initiative as an example of how all trials should work. Since MJFF is sharing best practices with outside researchers, I have new hopes that there will be change as other research studies go forward.

DJ: That said, identifying volunteers continues to be a roadblock to completing clinical studies in Parkinson’s disease, not only at our site, but at most PD research centers.

JB: There are so many reasons why clinical trial participation is important but the one reason I hope you walk away remembering is that clinical trials can help find answers to the questions we’re all asking.  Without trial participation, there will be no treatments; there will be no cure.

DJ: By taking this crucial step, you are making it easier for researchers to identify and work with willing volunteers who are eager to participate in trials. Even if you haven't found a trial that is the perfect match so far, I assure you that a trial will be along eventually that needs someone just like you.

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