Since his Parkinson’s diagnosis in 2006, 63-year-old Bob Harmon has “made it his job” to inform people about all that’s going on in PD research: He has launched his own Team Fox event, and he often speaks publicly about his optimistic approach to living with the disease. “The only guy more optimistic than me is your boss,” he tells us.
Bob has also devoted himself to taking up what he calls an “active fight” against Parkinson’s by participating in clinical research. For the past five years, he has been enrolled in a trial aimed at learning more about whether the nutritional supplement creatine might slow the progression of PD. He still has about another year to go in the study.
“I was lucky,” he says, because his own neurologist found him a trial he could participate in. “This was my opportunity to do something. So I told him, as long as they don’t kill me, I’m in!”
But for many of those willing to participate, finding clinical trials near home isn’t always so easy. The statistics around clinical trial participation are frustratingly striking: Thirty percent of all clinical trials fail to recruit a single person, while 85 percent of clinical trials face delays due to limited participation. And despite an overwhelming interest from the PD community, fewer than 10 percent of Parkinson’s patients ever take part in trials. It’s not that they’re not willing, they just don’t know how, and where, to get started.
But this past year, The Michael J. Fox Foundation launched Fox Trial Finder, a clinical trial matching tool designed to pair willing volunteers with the trials that need them, and that are geographically accessible. Bob and his family are enthusiastic proponents of the site. Bob, his wife Cecily, and twin daughters Kate and Emily have all registered for the tool. Cecily is also participating in the Parkinson’s Progression Markers Initiative (PPMI) as a control. Bob drives Cecily to all of her PPMI appointments. “She’s joined me in finding a cure for PD. The least I can do is give her a ride,” he says.
Before Fox Trial Finder, Bob says that he was at a loss for finding potential trials that he could sign up for. But no longer. “Fox Trial Finder is so easy to use,” he says. “It took me less than five minutes to fill out a profile, and I was already able to see what trials were available in my area.”
Bob has yet to find a new trial that is suitable for him — he’s ineligible for most interventional trials (those that test new drugs or devices) since he’s currently enrolled in one. But he has had some contact with clinical trial teams on observational studies (those designed to better understand the disease, without introducing new drugs). By talking directly to trial teams, he quickly learned that he wasn’t a candidate for several trials. This, however, was instructional too, and reminded him to update his Fox Trial Finder profile with the latest pertinent information about his genetic status (Bob is a member of 23andMe’s Parkinson’s community, sending in a saliva sample for DNA testing). The more accurate an individual’s profile is, he reminds us, the better Fox Trial Finder is at matching its users with the right trials.
Bob is looking forward to making his own first match through the site. For now, he’ll keep his eyes peeled for an appropriate observational study. And once his current interventional trial commitment is finished, he’ll be all the more ready “to lock and load on the next one.”
“Parkinson’s disease isn’t going to get me,” says Bob. “And in the meantime, I’m going to do everything I can to make sure it doesn’t.”