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 an ongoing 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.
The project, led by Laurie Mischley, ND, MPH, PhD(c), of 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 complete a survey every six months, answering questions about medications, diet, herbal supplements, exercise, meditation and an array of other factors.
This approach is enabling Dr. Mischley’s team to 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.
“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 continues to need participants from anywhere in the world at all stages of Parkinson’s, regardless of whether they use alternative therapies. Participants 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.
Already, the results are extremely interesting. “We are beginning to find new ways to describe this disease and track progression, and it’s becoming obvious that choices we make really do correlate with outcomes,” says Dr. Mischley. “We currently have 680 participants — as soon as we have 1,000 participants enrolled, we plan to publish the first set of results.”
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 (and unsuccessful) 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 Integrative Health (NCCIH), a part of the National Institutes of Health that helps Complementary and Alternative Medicine Care (CAM) practitioners conduct scientifically rigorous studies that can advance public health. Dr. Mischley received a five-year NCCIH grant in 2010. Bastyr students are also helping with study design and data collection, developing research skills along with their medical training.
“Anyone with a diagnosis of Parkinson’s disease can participate,” says Dr. Mischley. “Individuals don’t need to use complementary and alternative medicine. Our goal is to enroll a diverse cohort of participants so that the results reflect individuals in good and poor health, from urban and rural environments, who treat their disease in very different ways. The more people that participate, the more accurate the findings!”
To learn more about the study or find out if you are eligible to participate, see the study page.