- Trial Participant Pack for patients offers information and first-person narratives to fill knowledge gaps and demystify clinical studies
- Trial Resource Pack for trial teams shares best practices and tools for recruitment and retention
- Suite made possible by pharmaceutical and biotech members of MJFF's Parkinson's Disease Education Consortium
NEW YORK (April 3, 2018) -- As part of its ongoing programmatic efforts to increase the flow of participants into clinical studies that urgently need them, The Michael J. Fox Foundation for Parkinson's Research (MJFF) launched the "Parkinson's Clinical Trial Companion" educational suite. This new resource, available at www.michaeljfox.org/PDcompanion, educates patients and families about the power of participating in research and furnishes teams running clinical studies with high-quality tools to recruit and retain volunteers.
Clinical trials are the final, vital step in developing new therapies for Parkinson's disease (PD). Unfortunately, across all research, 85 percent of trials face delays and 30 percent never get off the ground due to a lack of volunteers. In a 2014 Harris poll conducted on behalf of MJFF, only 36 percent of Parkinson's patients reported feeling informed about opportunities to participate in clinical research.
"Patient participation in research is key to driving scientific breakthroughs and cures. Yet clinical trials routinely encounter roadblocks that slow progress, including a chronic shortage of volunteers," said MJFF CEO Todd Sherer, PhD. "We believe it is our obligation to foster partnerships among patients, families and researchers to bring more people with the disease into Parkinson's clinical trials by educating potential study participants and supporting trial teams' recruitment efforts."
Materials Tailored to Support Two Audiences: Patients and Trial Teams
One part educational guide for people with PD, and one part resource for clinical trial teams, Parkinson's Clinical Trial Companion is designed to holistically address challenges in clinical trial recruitment by supporting two key audiences:
- In the Trial Participant Pack, patients and families will find “Navigating Clinical Trials,” a comprehensive 52-page guide illuminating and demystifying multiple aspects of clinical research including:
-basics, including informed consent process, phases of studies and other fundamentals;
-research at every stage of disease;
-technology-enabled research opportunities;
-international research opportunities;
-the role of families and care partners in supporting participation
Intended as a global resource, the patient guide will be translated and available in Spanish, French, German and Italian. The guide is complemented by personal stories and videos featuring patients, care partners and clinical research professionals providing information and first-person viewpoints on their experiences.
- In the Trial Resource Pack, clinical trial teams will find a best practices manual disseminating a wealth of information and knowledge, with the participant journey as an organizing principle for optimizing clinical trial design. The manual takes advantage of new technologies that recently have increased patient awareness and enthusiasm for clinical trial participation, made data collection easier and opened new routes to novel discoveries.
The guide is complemented by a downloadable toolkit that anyone designing a clinical trial can customize and use to present a study to the Parkinson's community, with 34 templates for practical trial needs such as digital marketing, one-pager informational flyers and other key tools to support patient recruitment and retention.
"The task of recruiting and retaining study participants need not be overwhelming," said Tanya Simuni, MD, professor of neurology and head of the division of movement disorders at Northwestern University Feinberg School of Medicine. "Parkinson's Clinical Trial Companion offers trial teams a step-by-step, patient-centered approach to support progress in Parkinson's research through practical resources designed to help streamline participant enrollment and ensure that volunteers continue through to the trial's end."
A Longstanding Commitment to Research Engagement
The Michael J. Fox Foundation is committed to educating patients and families about their power to accelerate new therapies by participating in clinical research, and to building practical, user-friendly resources to help more people get involved. In 2012, MJFF launched the online smart-matching tool Fox Trial Finder (www.foxtrialfinder.org), an online platform that connects volunteers with and without PD to clinical trials in their area, increasing the efficiency of the enrollment process and empowering patients to get more involved in the discovery of new therapies. The Foundation frequently hosts and presents at clinical trial fairs and other Parkinson's community events throughout the nation. And MJFF is the sponsor of Fox Insight, an online clinical study that collects day-to-day information on the lived experience and genetics of Parkinson's, and the Parkinson's Progression Markers Initiative, a landmark clinical study focused on identifying and validating Parkinson's disease biomarkers.
Funding for Parkinson's Clinical Trial Companion was provided by members of MJFF's 2017 Parkinson's Disease Education Consortium: ACADIA Pharmaceuticals (steering committee member), Pfizer (steering committee member), Adamas Pharmaceuticals, Cellular Dynamics International, Lundbeck, Prothena Biosciences and Sunovion Pharmaceuticals Inc. This alliance of biotechnology and pharmaceutical firms support the Foundation's commitment to furnishing high-quality educational resources for the Parkinson's community with corporate sponsorship that allows MJFF to create and distribute materials such as the Parkinson's Clinical Trial Companion suite while preserving its track record of efficiency in stewarding donor-raised contributions for maximum impact on Parkinson's drug development.
"I am grateful to the researchers, neurologists and everyone in the Parkinson's community for their contributions and dedication to the pursuit of a cure," said Steve DeWitte, a member of the Foundation's Patient Council. "But there's one thing patients must do ourselves: participate in clinical trials. By making the decision to get involved in research, we can help overcome a major roadblock on the path to a cure."
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 $800 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. For more information, visit us on the Web, Facebook, Twitter, LinkedIn and Pinterest.
The Michael J. Fox Foundation