What if researchers of a destructive disease focused not on sickness but on wellness? What if they sought those who managed the disease most successfully and learned what they had in common?
That's the approach behind a new Bastyr University investigation of Parkinson's disease, a progressive nervous system disorder often marked by trembling, stiffness and slowing of movement. Parkinson’s arises from a little-understood combination of genetic and environmental factors that conventional medical research has struggled to address.
A new project led by Laurie Mischley, ND, a clinical research assistant professor at the Bastyr University Research Institute, employs an unusual method. The study uses an online survey to collect a broad range of data from patients with Parkinson’s and related diseases from all over the world. Participants will complete a survey every six months, answering questions about medications, diet, herbal supplements, exercise, meditation and an array of other factors.
That will let Dr. Mischley’s team build an ever-growing data set to analyze, searching for common traits among those who maintain their health despite the disease. Their discoveries could lead to new clinical trials on Parkinson’s therapies.
“It’s just taking advantage of what we can now do with statistics,” says Dr. Mischley, who is leading a similar study on multiple sclerosis along with additional Parkinson’s studies. “We’re taking a step back to ask a common-sense question: ‘Among those with Parkinson’s who are doing unusually well, what are they doing differently?’”
To find out, the study needs participants from anywhere in the world at all stages of Parkinson’s, regardless of whether they use alternative therapies. Participants will take the survey online twice a year for five years. The data becomes especially powerful once researchers have tracked people for two years or longer, Dr. Mischley says. Researchers can also adjust the survey over the course of the project, letting them hone in on promising trends.
The study uses the “positive deviance” model of focusing on those who deviate from the norm in their success. Rather than investigating one variable at a time through double-blind placebo-controlled trials — the gold standard of mainstream medical research — Dr. Mischley’s project will seek to uncover all significant traits of the successful outliers. It may turn out that they eat a lot of carrots, drink ginger tea, practice meditation daily, and live in tropical climates (to give a purely imaginary example).
For a complex disease like Parkinson’s, an unconventional approach makes sense, says Dr. Mischley.
“We have this really diverse disease in Parkinson’s, and it’s just not likely we’re going to come up with one single agent that’s going to stop the whole thing,” she says. “Funders invest millions of dollars in double-blind placebo-controlled trials, and they’re not bearing fruit.”
Five credible studies have linked eating dairy with Parkinson’s, but no one has studied how dairy affects progression rates for those who already have the disease, partially because of a lack of funding, Dr. Mischley says. To her, that shows the limits of conventional research methods.
She says positive deviance has gained more attention in international research and nutrition research (because you can’t design a placebo for, say, eating a banana).
“Positive deviance seems to be getting a lot of good attention,” she says. “People really like the term. It also fits the naturopathic philosophy, because rather than studying disease, we’re studying health.”
Funding for the study comes in part from the National Center for Complementary and Alternative Medicine (NCCAM), a part of the National Institutes of Health that helps CAM practitioners conduct scientifically rigorous studies that can advance public health. Dr. Mischley received a four-year NCCAM grant in 2010. Bastyr students are also helping with study design and data collection, developing research skills along with their medical training.
Sydney Dittman, a Georgetown University student entering medical school in the fall, joined the project when she heard about its unusual approach to Parkinson’s, a disease that has affected her family. “From an academic point of view, I’m really excited about the survey approach of looking really broadly for positive deviants,” she says. “I’m interested to see what that brings up.”
To learn more about the study or find out if you are eligible to participate, see the study page.