July 6, 2012 (Dublin, Ireland) — Experts at the Michael J. Fox Foundation for Parkinson's Research have developed a new tool that connects subjects, physicians, and volunteers with appropriate clinical trials. Called Fox Trial Finder, it can be found at www.foxtrialfinder.org.
Officially launched in April 2012, the site has already attracted and signed 8000 people, who have created profiles in search of the right trial for them. Seventy percent are Parkinson's patients, and the rest are healthy volunteers.
"Fox Trial Finders is a new tool that will accelerate clinical research or clinical trials in Parkinson's disease," Mark Frasier, PhD, vice president of research programs from the Michael J. Fox Foundation for Parkinson's Research in New York City told Medscape Medical News.
Dr. Frasier formally introduced Fox Trial Finder at the Movement Disorder Society's 16th International Congress of Parkinson's Disease and Movement Disorders.
"The project has 2 objectives," he said. In addition to providing Parkinson's disease patients and control subjects with a way to identify and connect with trials that they may qualify for, it provides coordinators and physicians with qualified leads and a way to connect with potential subjects for trials.
"One of the challenges we have seen in funding research is the paucity of individuals who really know where to engage and enroll in clinical trials," Dr. Frasier explained.
"When we do our research and talk to patients, we find that about 80% to 85% of people with Parkinson's are motivated to participate in clinical trials, but less than 10% really know where to find the trials, and how to enroll, and how to raise their hand," he stated.
We like to call it a 'match.com' for clinical trial research…
Fox Trial Finder (FTF) was created to meet this need. "We like to call it a 'match.com' for clinical trial research that allows both patients to raise their hand and volunteer and create a profile that's based on their symptoms, and also let them see trials in their geographic area. On the other hand, the clinical researchers, the doctors and nurses, and sponsors of the research can enter their studies and descriptions of the type of person they are looking to recruit and can also see the people who have signed up through Fox Trial Finder, and then reach out to them anonymously to see if they are interested in participating in their particular study," Dr. Frasier explained.
He added that their current goal is to have 10,000 people signed by the end of 2012, "but I actually think we can do that by August."
Joining is free, and people who sign up receive email alerts on a regular basis notifying them of new trials for which they might be eligible.
"It's supposed to be a dynamic process and a dynamic experience in that it is not just a one-time sign-up. People will be receiving notifications on a regular basis, so if they are not interested in the first trials, there may be others that they may be interested in," Dr. Frasier said.
"Currently, the site lists 170 trials," he added.
"Even patients and physicians who live in relatively remote areas far from large medical centers can benefit from the Fox Trial Finder," said Claire Meunier, MBA, director of research partnerships at the Michael J. Fox Foundation for Parkinson's Research.
"The system is built on zip codes, so if someone in a remote area comes to the site and registers, their trial results are going to be ordered by those in the closest proximity to them to those further away. Certainly there is not a trial going on in every town in America, but if you live an hour or two away from a town where research is going on, those are going to show up," Ms. Meunier told Medscape Medical News.
She also pointed out the small but growing trend in research to consider virtual studies, where people can participate from home.
"We're very eager to get those studies on Fox Trial Finder. We have a few currently but are always looking for more, so that is a trial opportunity that applies to anyone, regardless of where they are located," Ms. Meunier said.
Dr. Frasier emphasized that the trials are not all about testing novel drugs. "A lot of the studies on the Website are observational, to understand how Parkinson's progresses, or how environments may influence Parkinson's disease, or how genetics influences Parkinson's disease. We know that not everyone is interested in participating in experimental medicine trials with a new, never-before-tried drug, but they may be interested in contributing their information or experience to a particular study, so it is important to have both observational and interventional studies on the site."
Ensures Patient Anonymity
Medscape Medical News invited Lawrence Elmer, MD, PhD, professor in the Department of Neurology, and director of the Parkinson's Disease and Movement Disorder Program at the University of Toledo College of Medicine in Ohio, to comment on the Fox Trial Finder project.
"The FTF is an ambitious and exciting mechanism to connect PD [Parkinson's disease] patients with clinical trials," Dr. Elmer said.
"There have been multiple attempts in the past to help inform patients interested in clinical research studies, and the Fox Trial Finder takes this a step further," he said.
"In an anonymous fashion, FTF asks patients about their status, including symptoms, medications, and basic clinical aspects, and then provides opportunities for them to contact research sites in their geographic region and request information. Until the patient decides to reveal their identity, they remain unknown to the recruiting site. This puts the maximum amount of information and control in the patient's corner," Dr. Elmer said.
"This particular online tool was overwhelmingly needed, and the MJ Fox Foundation has done it right," he added. "As they discuss, a major reason new treatments for PD are delayed is the severe holdup in recruiting new study participants. In a sense, with a pool of 5000 people enrolled as their goal, clinical studies should have adequate numbers in the FTF for any upcoming therapeutic trial, [but] many of them [are] just waiting to enroll."
Dr. Frasier and Ms. Meunier have disclosed no relevant financial relationships. Dr. Elmer reports financial relationships with Lundbeck, Teva Neurosciences, UCB Inc, Impax Laboratories, and Novartis Pharmaceuticals, and is a member of the editorial advisory board for Medscape Neurology.
Movement Disorder Society 16th International Congress of Parkinson's Disease and Movement Disorders: Abstract 366. Presented June 18, 2012.
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Cite this: Fox Trial Finder Matches Parkinson's Patients With Trials - Medscape - Jul 06, 2012.