- 85 percent of Parkinson's patients wish they were better informed about clinical trials
- 61 percent of Parkinson's patients don't know where to obtain information about trials
- 77 percent of Parkinson's patients wish there were a secure and anonymous online tool to help them locate clinical trials in their area*
NEW YORK, June 12, 2012 /CNW/ - Today, The Michael J. Fox Foundation for Parkinson's Research (MJFF) launched Fox Trial Finder (www.foxtrialfinder.org) in the United Kingdom (UK), Ireland and Canada. This first-of-its-kind online platform anonymously connects volunteers with and without Parkinson's disease to clinical trials in critical need of participants. Fox Trial Finder matches volunteers with the trials most likely to need them, increasing the efficiency of the enrollment process and empowering patients to get more involved in the discovery of new treatments.
"Fox Trial Finder is a practical, user-friendly solution to help everyday people get involved in research," said Todd Sherer, PhD, CEO of The Michael J. Fox Foundation. "Its matching capability removes one of the roadblocks to participation by making it easier to find the right trials. The tool instantaneously sorts through scores of trials to find the ones that specifically need you. And once you save a profile, Fox Trial Finder will continually alert you to your best matches as new trials launch, without your having to come back to the site to search again."
"As both a physician and a Parkinson's patient who's lived with the disease for over 14 years, I personally identify with the urgent need to find a cure, and I know that clinical research is vital to getting many of the answers we need," says Soania Mathur, Patient Council Member at The Michael J. Fox Foundation and Fox Trial Finder volunteer. "Fox Trial Finder empowers volunteers to connect with trial teams and enroll in studies, allowing the patient and research communities to work together towards the cure. I signed up and I've encouraged my friends and family to do the same."
Overcoming Misperceptions and a Lack of Information about Trials
MJFF recently conducted a survey of nearly 1,000 Parkinson's patients about clinical research participation attitudes. The survey reveals that the Parkinson's community has a high interest in contributing to finding a cure for Parkinson's. Unfortunately, people don't always know where to find the resources they need to do so:
- Although 85 percent of patients wish they were better informed about trials, only one in four (25 percent) has initiated a conversation about trials with their doctor
- 61 percent of patients say they don't know where to turn for information about clinical trials
- More than 3 in 4 Parkinson's patients (77 percent) wish there were a secure and anonymous online tool to help them locate clinical trials in their area
The survey also reveals critical misperceptions about Parkinson's clinical research, presenting additional roadblocks to participation by those who are most needed:
- Nearly 2 in 5 patients (39 percent) mistakenly believe clinical trials for Parkinson's have little trouble recruiting volunteers
- Personal safety is a concern, with 68 percent believing clinical trials are risky
- More than half of those surveyed (56 percent) believe patients in clinical trials are "guinea pigs"
- There is a lack of awareness of the range of research being conducted, with more than four in five patients surveyed unaware of clinical trials that use singing (88 percent unaware) or activities like playing Nintendo Wii (85 percent unaware) as interventions with potential to improve day-to-day management of their disease
How It Works: Two-way Messaging with Volunteers' Anonymity Assured
Fox Trial Finder is easy to use. Volunteers fill out simple Web forms with information such as geographic location and medical history. Fox Trial Finder then compares this information against its database of all Parkinson's clinical trials currently enrolling volunteers. The tool instantly returns a short list of the best potential matches. The volunteer can then review these matches and use a built-in Fox Trial Finder messaging function to connect with trial teams. Volunteers who save profiles also can choose to receive notifications whenever new trials launch that need them — effortlessly staying up to date on their best trial matches.
Fox Trial Finder is also a resource for the research coordinators actively seeking volunteers for their trials. After creating a login on the system, coordinators can review de-identified profiles of eligible volunteers in their area. Coordinators can then reach out to volunteers directly, through the built-in messaging system, to further explore the qualifications and appropriateness of the volunteer for their trial.
No matter who initiates contact, volunteers' privacy is protected by the highest level of security protocols; personal identifiers, such as name and contact information, remain private unless and until volunteers proactively choose to share this information with a trial team.
Launched in beta version last July and officially in April 2012 in the United States, Fox Trial Finder currently includes more than 190 clinical trials in its system, with 18 in Canada specifically, and nearly 7,000 volunteers have already registered. The site is now live in the United States, Ireland, Canada, UK and Australia, and is expected to launch in other international locations coming later this year.
The Fox Trial Finder database includes both interventional studies designed to test potential new drugs, and observational studies intended to contribute to overall understanding of Parkinson's disease. To be posted to the site, all studies must have obtained regulatory approval.
Michael J. Fox: "Participating in research makes you an agent of change"
"Fox Trial Finder sends the Parkinson's community an invaluable message: There's something you can do," said Michael J. Fox. "Participating in research makes you an agent of change. Fox Trial Finder is a practical tool to help you get started. That's a message we hope everyone affected by Parkinson's will receive loud and clear."
To create a profile and start finding potential trial matches today, visit www.foxtrialfinder.org.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest private 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 $289 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. Now through December 31, 2012, all new and increased giving to The Michael J. Fox Foundation, as well as gifts from donors who have not given since 2010 or earlier, will be matched on a dollar-for-dollar basis with the $50-million Brin Wojcicki Challenge, launched by Sergey Brin and Anne Wojcicki.
*These data were collected during a recently conducted MJFF survey of nearly 1,000 Parkinson's patients about clinical research participation attitudes
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SOURCE The Michael J. Fox Foundation for Parkinson's Research
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