Collaboration to raise awareness of Parkinson's disease
16 Parkinson's disease organizations from around the world have joined forces to create a Clinical Trial Recruitment Community Partnership to persuade people living with Parkinson's disease, caregivers and others to participate in clinical trials. The goal of this innovative effort among the Parkinson's community is to raise awareness of the need to increase the number of participants in clinical trials, educate what research participation means, and create real steps anyone can take to become involved in Parkinson's disease research.
"While a new treatment for Parkinson's disease reaches clinical testing, tens of millions of dollars have already been invested in its development," says Dr. Todd Scherer, chairman of the Michael J. Fox Foundation for Parkinson's Research, the organization that organizes the community, "at this point only people who are interested in participating in the clinical trial will push the treatment Moving forward toward reaching pharmacy shelves The partners in the clinical trial recruitment community recognize the special importance of Parkinson's patients and their families in moving toward a cure.
Clinical trials are the final and decisive step in bringing new drugs to the patients who need them. But today 40% of trials worldwide suffer from delays due to a lack of participants and 70% are delayed on the grounds of innovative and better treatments. Although 60% of Parkinson's patients say they are willing to participate in clinical trials, less than 10% actually do. The clinical trial recruitment community helps patients who have expressed their desire to participate in clinical trials to information that will help bridge the gap between desire and actual participation in a clinical trial around the world.
"The recruitment community to clinical trials is committed to doing everything it can to change the lives of all the millions affected by the disease," says Tom Isaacs, one of the founders of the Parkinson's Disease Foundation, a British organization that is one of 16 organizations. "Our goal is to get everyone on the same page, equipped with the same information and the same tools so that the community receives a uniform tax on the importance of the step they need to take in order to take part in the research."
One of the tools is a website www.foxtrialfinder.org who mediates between volunteers with Parkinson's disease and those who are not sick for clinical trials in their environment. The clinical trial recruitment community will actively promote this tool and other tools to motivate the community to participate in Parkinson's disease research. An example of this is the annual united walk event (19 years) in New York's Central Park on Saturday April 27, where the recruitment community for clinical trials will have a booth, and where people with Parkinson's disease who participated in clinical trials will talk to the audience about the importance of participation. Steve de Wit, a Parkinson's patient from New Haven, Connecticut says: "I used to think that clinical trials were important but there would be someone else participating in them. But 'someone else' is me and every Parkinson's patient and their family members." Steve has participated in numerous clinical trials and currently organizes transportation for clinical trial participants to ensure that the people who want to participate in clinical trials can do so. "I want to make others understand that it doesn't matter if you have Parkinson's or not, you are needed and can be part of the solution.
The Clinical Trial Recruitment Community was established in 2012 by the Michael J. Fox Foundation for Parkinson's Disease Research. To learn more please contact: http://www.foxtrialfinder.org/community-partners
The recruitment community for the clinical trials includes:
Bachmann-Strauss Foundation for Dystonia and Parkinson's
The trust to cure Parkinson's disease
Davis Finney Foundation for Parkinson's Disease
The Michael J. Fox Foundation for Parkinson's Disease 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
For the Michael J. Fox Foundation for Parkinson's Disease Research
As the world's largest private funder, the Michael J. Fox Parkinson's Disease Research Foundation is dedicated to accelerating the discovery of a cure for Parkinson's disease and improving treatments for living with the disease. The Foundation convinces others of its goals by aggressive funding, a focused research program accompanied by the commitment of scientists around the world as well as Parkinson's patients, business people participating in clinical trials, donors and volunteers. In addition to funding more than $325 million to date in research, the foundation has changed the pace of progress toward a cure. The foundation, which operates in the Parkinson's disease research center, encourages breakthroughs, collaboration with industry, with foundations that finance scientists and governmental research, increasing the flow rate of participants in Parkinson's disease clinical trials, through an online tool - FOX TRIAL FINDER - encourages awareness of Parkinson's disease through activity High profile, events and management that will connect the common man with thousands of Fox team members around the world.
