When Linda Morgan was diagnosed with Parkinson’s disease in October 2005, her doctor told her that her symptoms weren’t bad and instructed her to come back in a year.
Sit around and wait — for a year?! No thank you, thought Morgan, who felt like she needed to do something after getting the scary diagnosis. Just a month later, she enrolled in a clinical trial — and since then, she’s participated in about 15.
“To get the cure that we want one day or the better drugs and the better treatments and better information about Parkinson’s, we all need to do our part and participate in clinical trials,” said Morgan, a pharmacist who lives in Asheville, N.C.
Clinical trials are a required part of the regulatory process to prove that new therapies are safe and effective. While studies for heart disease and cancer treatments can fill up in 24 hours, recruiting volunteers for Parkinson’s trials is a much slower process, of about one recruit per study per location each month, said Deborah Brooks, co-founder of The Michael J. Fox Foundation for Parkinson’s Research.
Fewer than one in 10 Parkinson’s patients ever participates in a trial, Brooks said, citing data from the National Institutes of Health from 2003-2004. A 2006 Harris Poll commissioned by the Fox foundation found that while about 80 percent of Parkinson’s patients would be willing to join a study, many haven’t been told of opportunities or given access to study information, Brooks said. Many people simply don’t know how badly they’re needed.
Parkinson’s is a degenerative central nervous system disorder that results in movement problems like trembling and rigidity and affects an estimated 1 million Americans. While medications offer relief from symptoms, there are none yet that halt the progression of the disease.
Committed to the research process, Morgan is among the nearly 2,500 people who have created profiles with the Fox Trial Finder, an online tool that the Fox foundation launched in beta in July.
The finder, which uses state-of-the art technology to match study volunteers with research trial coordinators, aims to get people into clinical trials and observational studies faster to speed the development of new treatments and ultimately find a cure, Brooks said.
“This is an example of how technology can enable us to bring new strategies to address a long-standing problem,” Brooks said.
“Patients have an opportunity to be engaged in many ways in accelerating treatments and participating in clinical trials is one of the most important ways,” Brooks said. “Cures don’t come out of the sky. They can be part of it.”
The problem of not enough volunteers for trials isn’t unique to patients with Parkinson’s, said Kathryn G. Whitford, vice president of the American Parkinson Disease Association. Some don’t understand the variety of trials available, such as nutritional studies and exercise trials and “some patients are hesitant to do it because they think it would be against the wishes of their physician,” Whitford said. “Some physicians are very encouraging and some hesitate for patients to experiment with new therapies especially if they are doing well on their current regimes.”
The finder has refined matching technology that directs volunteers to studies for which they are qualified. In a unique feature, Brooks said, volunteers can store profiles and are notified when studies that match their criteria become available, so they don’t have to keep checking back. Research trial coordinators use the site to look for qualified volunteers. The two sides can contact each other – the volunteers are anonymous at first – to express interest or ask questions.
“They’re accessing smart-match technology that’s pro-active but privacy-assured that eases the burden to them,” Brooks said of volunteers. “It’s easier for the two sides. We’re trying to speed, simplify and target these matches.”
While other websites list research trials and can be searched by say, location, Brooks said Fox finder is easier to navigate. “It’s a 2012 kind of user experience,” she said.
“We didn’t come at this to be competing with other things,” Brooks said. “We saw there was a real opportunity for improvements on usability and functionality.”
Whitford said the Fox finder, and the other trial-listing sites, are all comprehensive. But she said the finder “is a more sophisticated tool [and] a very valuable tool in helping people to find the trial that would best suit their particular needs.”
Since creating her profile over the summer, Morgan, 56, said she’s been notified of one study, but it was one in which she had already enrolled. On a recent check of trials in her area, she said she was disappointed to see that most did not have trial coordinators attached to them.
“It has great potential,” said Morgan, also a volunteer research advocate for the Parkinson’s Disease Foundation. “It’s very exciting to have a matching active engine out there. You put the info in and it does the work for you.”
And, she reminds the Parkinson’s community that volunteers are so important to research.
“When you think about it, the only way new medications or new treatments are available is because somebody volunteered to test it,” Morgan said. “They have to have volunteers.” Click here to see the original article.Note: Linda Morgan is one of about 60 people with Parkinson’s disease who share their perspectives in the Davis Phinney Foundation’s “Every Victory Counts” self-care manual. Linda Morgan will participate in the Foundation’s educational symposium, “The Victory Summit,” in Richmond, VA on May 19, 2012.