The US-based Michael J Fox Foundation, which funds and supports research and development for Parkinson’s disease (PD), has announced the launch in the UK, Ireland and Canada of Fox Trial Finder, its online platform for matching volunteers with clinical studies for PD.
The Trial Finder anonymously connects volunteers both with and without Parkinson’s disease to clinical trials in critical need of participants. The platform matches volunteers with the trials most likely to need them, thereby enhancing the efficiency of the enrolment process, the Foundation notes.
Potential trial participants using the service fill out Web forms with information such as their geographical location and medical history. Fox Trial Finder then compares this information against its database of all Parkinson’s clinical trials currently enrolling volunteers and immediately returns a short list of the best potential matches.
The volunteer can review these matches and use a built-in Fox Trial Finder messaging function to connect with trial teams. Participants who save their profiles can also choose to receive notifications whenever relevant new trials start up.
Research co-ordinators
The Trial Finder also acts as a resource for research co-ordinators seeking volunteers for their clinical trials. After creating a log-in on the system, co-ordinators can review de-identified profiles of eligible volunteers in their area. They can also contact volunteers directly through the built-in messaging system.
Fox Trial Finder debuted in a beta version last July and was officially launched in the US in April 2012. The system currently includes more than 190 clinical trials, with 60 in the UK. Nearly 7,000 volunteers have registered with Fox Trial Finder to date.
The site is now live in the US, Ireland, Canada, the UK and Australia, and is expected to launch in other international locations later this year.
The Trial Finder database incorporates both interventional studies designed to test potential new drugs for PD and observational studies aimed at contributing to overall understanding of the disease. All studies need to have obtained regulatory approval to be posted on the site.
Eager but uncertain
The Michael J Fox Foundation recently conducted a survey of nearly 1,000 Parkinson’s disease patients about their attitudes to clinical-research participation. It found a high level of interest among the Parkinson’s community in contributing to research but uncertainty about where to find the resources to do so.
For example, while 85% of the patients surveyed wished they were better informed about PD studies, only one in four had initiated a conversation about trials with their doctor, the Foundation repots.
Moreover, 61% of patients said they did not know where to turn for information about clinical trials in Parkinson’s disease. And 77% wished there were a secure and anonymous online tool to help them locate clinical trials in their area.
On the downside, the Foundation identified “critical misperceptions” about clinical research for PD, presenting additional roadblocks to trial participation.
Nearly two in five (39%) of the patients in the survey, for example, mistakenly believed clinical trials for Parkinson’s had little trouble recruiting volunteers.
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