By Marc Dresner, IIR
Parkinson’s disease affects approximately one million people in the U.S. and 5-6 million people worldwide. But those afflicted with this incredibly debilitating condition and their loved ones suffered mostly in silence until one of Hollywood’s most famous celebrities went public with his condition in 1999.
Today, Michael J. Fox, through his personal courage and activism, has put a face on a disease that few people had even heard of prior to his announcement.
While tragic, fame has its advantages, and through Fox, Parkinson’s sufferers finally found a voice and a powerful advocate. But that was only the beginning.
In 2000, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) was established and the organization has aggressively pursued research into treatment and—hopefully, eventually—a cure for the disease.
While its namesake affords MJFF a level of visibility and support that other foundations might only dream of, MJFF’s greatest asset resides behind the scenes in the tireless efforts of its dedicated team of researchers, organizers and other personnel who’ve taken an uncommonly hands-on approach to finding a solution.
Take trial recruitment, for example.
“We’ve seen estimates that fewer than one in ten people with PD participate in clinical research,” said Sohini Chowdhury, SVP for Research Partnerships at MJFF.
“There is a huge need to get out there and ensure that patients and their networks—whether they be caregivers, friends, loved ones, supporters—understand that there is a real role to play in advancing research and that they can play that crucial role; they need to get engaged,” Chowdhury emphasized.
To that end, Chowdhury and her team have developed an elegant solution to the enormous challenge of trial recruitment: Fox Trial Finder.
Sort of a match.com for clinical trials, as Chowdury put it, Fox Trial Finder is an online, patient-centric tool that uses a backend algorithm to connect prospective trial participants with a network of sites in their geographic vicinity conducting studies that are looking for volunteers with compatible characteristics.
To date, there are over 15,000 registered volunteers and 220 clinical trials at 645 sites recruiting on Fox Trial Finder from the US, UK, Canada, and Australia. MJFF plans to expand its international reach to both the patient and clinical audience in Germany, France, Spain, Italy, and Austria later this year.
But the effort to raise awareness about the importance of clinical participation in Parkinson’s research does not begin or end with MJFF. Through the “Clinical Trial Recruitment Community Partners Program” the Foundation and 15 other Parkinson’s disease organizations collaborate to educate the Parkinson’s Community around the world and spread the word that through clinical trial participation they can make a difference.
At the end of the day, Chowdhury says it all boils down to patient engagement. “Patients want to be involved in research and they will get involved if they’ve got the right tools and if they’ve got the right resources,” she told Inside Clinical.
While MJFF’s solution will clearly pave the way for more research into Parkinson’s, done more quickly and more efficiently than ever before, it’s worth noting that this formula could be applied to other diseases with similar results.
In this podcast interview for the Inside Clinical series, Sohini discusses:
- • MJFF’s four-pronged approach to research and “de-risking”
- • How Fox Trial Finder works in detail
- • The benefits of partnering
- • Best practices and lessons-learned since MJFF opened its doors in 2000 and more!
Download the Transcript!
Editor’s note: Sohini Chowdhury will co-present “The Benefit of Partnering with Patient Organizations” with Biogen Idec’s Bernard Ravina at the 22nd Annual Partnerships in Clinical Trials conference running April 21-24 in Orlando.
In addition, the Michael J. Fox Foundation’s Co-Founder and Executive Vice Chairman, Debi Brooks, will deliver a keynote: “Patient-Centered Drug Development: The Key Role that Only Patients Can Play.”
For more information, please visit www.clinicaltrialpartnerships.com and download our brochure.
Register today and mention code XP1806BLOG to save 10% off your registration!
And for more information about Fox Trial Finder or the Michael J. Fox Foundation for Parkinson’s Research please visit www.FoxTrialFinder.org and www.MichaelJFox.org
ABOUT THE AUTHOR/INTERVIEWER
Marc Dresner is IIR USA's senior editor and special communication projects lead. He is the former executive editor of Pharma Market Research Report, a confidential newsletter for market researchers in the pharmaceutical industry. He may be reached at email@example.com. Follow him @mdrezz.