Sixteen Parkinson's disease (PD) organizations from around the world have come together as Clinical Trial Recruitment Community Partners to urge people living with Parkinson's, care partners and others to participate in clinical trials. The goal of this innovative engagement effort within the Parkinson's community is to raise awareness about the need for trial participants, educate about what it means to participate in research and provide actionable steps that anyone can take to get involved in PD research.
"By the time a potential new Parkinson's treatment advances to the clinical testing stage, tens of millions of dollars have already been invested in its development," said Todd Sherer, PhD, CEO of The Michael J. Fox Foundation for Parkinson's Research, the organization convening the Community Partners. "At that point, only people willing to participate in clinical trials have the power to move it forward and toward pharmacy shelves. The Clinical Trial Recruitment Community Partners recognize the unique role that patients and their families can play to get us closer to cures."
Clinical trials are the final and crucial step in bringing new medicines to the patients that need them. But today, between 40 and 70 percent of trials around the world face delays due to a lack of participants and stall progress in the pursuit of new and better therapies. Though 60 percent of people with Parkinson's disease say they are willing to participate in a clinical trial, fewer than 10 percent ever do. Clinical Trial Recruitment Community Partners help people willing to participate get the resources they need to bridge the gap between willingness and action across the PD community worldwide.
"The Clinical Trial Recruitment Community Partners are committed to doing everything we can to make a difference in the millions of lives touched by Parkinson's disease," said Tom Isaacs, co-founder of The Cure Parkinson's Trust, a UK organization that is one of the 16 partners. "Our goal is to get everyone on the same page, equipped with the same information and tools, so that the community gets one resounding message about the important step they can take to play a part in research."
One of these tools is the Web site www.foxtrialfinder.org that matches willing volunteers, both with PD and without, to clinical trials in their area. Clinical Trial Recruitment Community Partners will actively promote this and other resources to mobilize the community toward participating in PD research. An example is the 19th Annual Unity Walk in New York City's Central Park on Saturday, April 27 where the Clinical Trial Recruitment Community Partners will have a booth, staffed by people living with PD who have participated in clinical trials and will speak with others about the importance of participating.
Steve DeWitte, a person with Parkinson's in the New Haven, CT area said, "I once thought that while clinical trials were important, 'someone else' would be there to participate. However, that 'someone else' is me and every PD patient, family member and friend." Steve has participated in multiple trials and arranges rides for other trial participants to make sure that the people who are willing to participate can. "I want others to understand that, whether you have PD or not, you are needed and can be part of the solution, too."
The Clinical Trial Recruitment Community Partners group was convened in 2012 by The Michael J. Fox Foundation for Parkinson's Research. To learn more, visit http://www.foxtrialfinder.org/community-partners.
Clinical Trial Recruitment Community Partners:
The Bachmann-Strauss Dystonia and Parkinson Foundation
The Cure Parkinson's Trust
Davis Phinney Foundation for Parkinson's
The Michael J. Fox Foundation for Parkinson's Research
Move 4 Parkinson's
The New England Parkinson's Ride
Outdoor Mindset
Parkinson's Action Network
The Parkinson Alliance
Parkinson Association of Alabama, Inc.
Parkinson Association of the Rockies
Parkinson's Movement
Parkinson Pipeline Project
Parkinson's UK
Parkinson's Unity Walk
Shake It Up Australia Foundation
Team Parkinson
We Move
Wilkins Parkinson's Foundation