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The Michael J. Fox Foundation (MJFF) for Parkinson’s Research has launched an online tool called Fox Trial Finder to ease the search for clinical trials and for volunteers willing to participate.
People living with Parkinson’s disease as well as those without the disease who are willing to volunteer as a control subject in a trial can use the tool.
The foundation’s goal is to accelerate a cure for Parkinson’s and to further the development of therapies for those living with the disease.
Finding people to participate in trials is a challenge in Parkinson’s research, MJFF reported. In fact, 85 percent of clinical trials finish late due to difficulty in enrolling patients, according to an MJFF survey of 1,000 Parkinson’s patients. In addition, one-third of trials fail to get started due to a lack of willing participants, the foundation reported.
“Fox Trial Finder is a practical, user-friendly solution to help everyday people get involved in research,” Todd Sherer, CEO of MJFF, said in statement. “Its matching capability removes one of the roadblocks to participation by making it easier to find the right trials.
The tool helps volunteers find trials that meet their criteria and alerts them when new trials launch. The alerts reduce the need for other forms of search and recruiting for patients and control subjects, Sherer noted.
MJFF launched Fox Trial Finder in beta in July 2011 and officially unveiled the tool April 24. To date, the database holds more than 190 clinical trials and almost 5,000 registered volunteers, the foundation reported.
In an online form, searchers enter their location and information about their medical history. The database then produces a list of potential matches for trials.
Researchers use Fox Trial Finder to view de-identified profiles of possible volunteers. They then contact them using the built-in messaging tool to evaluate their qualifications to participate in a trial. Meanwhile, volunteers also use the messaging tool to communicate with trial teams anonymously.
“What does make it unique is the ability to combine that matching criteria with a two-way anonymous communication platform for volunteers to message with trial coordinators,” Laxmi Wordham, chief digital officer at MJFF, told eWEEK.
Volunteers in the database remain anonymous until they decide to share their identity, said Wordham.
Users can search the matching system without creating a profile by answering three questions: whether you have Parkinson’s, what’s your location and what’s your stage of diagnosis, said Wordham.
A key to the three-question matching system is its simplicity, Wordham noted. “We don’t want to overcomplicate, so we’ve tried to make it as simple as possible,” she said.
Creating a profile means you can see results immediately and also include an email address to be contacted as trials come up, she said.
In addition to trials that MJFF sponsors, Fox Trial Finder incorporates data from the federal government’s ClinicalTrials.gov as well as other research organizations.
“We work closely with clinical trial coordinators to make sure that data is up to date,” said Wordham.
“Fox Trial Finder sends the Parkinson’s community an invaluable message: There’s something you can do,” Michael J. Fox said in a statement. “Participating in research makes you an agent of change.” Fox has been raising awareness for the new tool as seen in this video from MJFF’s site.
In addition, the tool allows searchers to find both volunteers for trials and also clinical trials for volunteers. Fox Trial Finder includes studies that evaluate potential new drugs as well as those that educate about Parkinson’s.
“Fox Trial Finder is a practical tool to help you get started,” said Fox. “That’s a message we hope everyone affected by Parkinson’s will receive loud and clear.”
Of patients surveyed by MJFF, 77 percent would like to see a secure, anonymous online tool that can be used to find clinical trials.
Going forward, MJFF hopes to add results of trials in Fox Trial Finder. In addition, the foundation plans to expand potential matches to additional countries. “We provide trial matches in the United States, United Kingdom, Australia and Canada, and we’ll continue to build out to other international countries,” said Wordham.
In addition, the foundation may post personal stories online and allow patients to share their diaries. This may include information on sleeping patterns, symptoms and drug side effects, said Wordham.
“I think there is an opportunity for us to collect more open patient data and share it on an anonymous basis with the research community to understand what living with this disease is like,” said Wordham.