Patients Are Critical Collaborators In Parkinson's Disease
Empowered by Fox Trial Finder, patients play a critical role in tackling the chronic challenge of recruitment
09.25.13 | By Stephanie Fischer
Without patients who volunteer to participate in clinical trials, new medicines (including the 444 medicines in development to prevent and treat neurological disorders such as Parkinson’s) cannot be approved. The Michael J. Fox Foundation for Parkinson’s Research plays an active role in providing research tools, funding research, connecting the research community and engaging patients (and non-patients) in research including clinical trials.
Guest Perspective: Elizabeth Joyce, Marketing & Communications Officer, The Michael J. Fox Foundation for Parkinson’s Research
Recruiting volunteers to participate in clinical trials is a well-known and enduring obstacle to research progress, and the effect is staggering: 85 percent of trials across all diseases face delays and 30 percent never even get off the ground due to low enrollment. And Parkinson’s disease (PD) trials are no exception – fewer than 10 percent of Parkinson’s patients participate.
Today, there are more promising Parkinson’s drugs in the development pipeline than we’ve seen in decades, if not ever. In the context of this encouraging progress, the participation of Parkinson’s patients and control volunteers in PD research is critical to sustaining this momentum.
Despite trouble with recruitment, 60 percent of Parkinson’s patients say they are willing to participate in a trial. Recognizing the eagerness of the Parkinson’s community to take action, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) created Fox Trial Finder (www.foxtrialfinder.org), an online clinical trial recruitment tool that makes it easier for volunteers to participate. Fox Trial Finder matches interested PD patients and control volunteers with the clinical trials that need them, and allows them to send direct anonymous messages to pursue enrollment. In doing so, Fox Trial Finder empowers the patient community to play an active a role in drug development. Since its launch in 2011, nearly 22,000 people both with (76%) and without (24%) Parkinson’s disease have signed up on Fox Trial Finder.
At any given time, there are between 280 and 320 actively recruiting PD trials matching to registered volunteers on Fox Trial Finder, a comprehensive representation of PD clinical trials in five English-speaking countries (United States, Canada, Australia, United Kingdom, and Ireland). This fall, Fox Trial Finder will expand to support four additional languages and will match volunteers and trial sites in five new countries (Germany, Austria, France, Spain, and Italy).
PD researchers and trial team members can also sign up and use the tool to review de-identified volunteer matches for their trial(s), custom search the volunteer database, and message with prospective participants via an anonymous, internal messaging system. Acting as a sophisticated filter, rather than a lengthy list, Fox Trial Finder delivers pre-qualified trials to volunteers and quality leads to trial teams
To date, over 500,000 matches have been made and a survey of the Fox Trial Finder database showed that 12% of respondents have enrolled in a clinical trial using the tool. Furthermore, anecdotal evidence shared by Fox Trial Finder volunteers shows not only positive experiences participating in trials, but an increased sense of well-being and accomplishment. “Participating in [a] trial gave me an improved outlook and attitude about my diagnosis and made me feel as if I'm doing something proactive toward finding a cure,” said Susan Mollohan, a clinical trial participant interviewed by MJFF’s FoxFeed blog.
In the clinical research landscape, no amount of funding or other resources can ever make up for a lack of clinical trial volunteers. There are 22,000 out there ready and willing to participate in PD research alone, and more signing on every day. This sheer volume of volunteers suggests that patients and their loved ones are eager to participate in research and are both critical collaborators and valuable partners in the drug development process. “Because in the end,” says PD patient and clinical trial participant Claudia Revilla, “we are the ones looking for the cure. We have to raise our hands and start participating. We have to get involved in the process.”
To sign up for Fox Trial Finder either as a volunteer or a trial team member, visit www.foxtrialfinder.org or email firstname.lastname@example.org. To learn about more ways MJFF addresses clinical trial recruitment challenges, visit www.michaeljfox.org/research/trial.html.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $350 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.