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mHealth Researchers Turn to Crowd-Funding in Parkinson’s Study

Sage Bionetworks is seeking help to gather mHealth sensor data from two earlier Parkinson's studies, including the ResearchKit-based mPower app, and turn it into 'analysis-ready data.'

Source: ThinkStock

By Eric Wicklund

- Healthcare researchers are turning to crowdfunding to evaluate how mHealth sensors and smartphones can help those with Parkinson’s disease.

The Robert Wood Johnson Foundation and the Michael J. Fox Foundation for Parkinson’s Research are funding the Parkinson’s Disease Digital Biomarker DREAM Challenge, described as “the first of a series of open, crowd-funded projects designed to help researchers identify ways to use smartphones and remote sensing devices to monitor health and disease.”

Sage Bionetworks, a nonprofit biomedical research organization that often uses digital health technology like Apple’s ResearchKit platform, is managing the challenge. Participants will use data gathered in two earlier Parkinson’s-based projects that have focused on identifying markers of Parkinson’s disease (PD) severity based on measurements of movement, or actigraphy.

Researchers are turning to the public to help them convert raw sensor data collected by digital health devices into what they call “analysis-ready data.”

“While there are many projects that have successfully collected sensor data from people in the real-world setting, we still have a poor understanding of what the data can tell us about health,” Sage Bionetworks President Lara Mangravite said in a press release.

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The challenge will incorporate data gathered in mPower, an mHealth project launched on the ResearchKit platform in 2015 with support from the RWJF. One of the first apps to be featured on ResearchKit, mPower has gathered remote data from more than 6,000 of the 15,000 Parkinson’s patients who enrolled online.

“Remote sensor data capture can be used to objectively detect fluctuations in symptoms within a patient such as in response to medication,” Larsson Omberg, vice president of systems biology at Sage Bionetworks, said in the release. “But we are not yet very good at detecting differences between PD and non-PD participants. A major contributing factor is the naïve approaches to feature engineering that are currently being used.”

The second program, the MJFF-sponsored Levodopa Response Trial, gathered data from as many as eight accelerometer sensors over four days of research, half in a clinic and half at home, during which participants were required to perform 18 tasks.

“Increasing the accuracy of remote health monitoring will expand our ability to better understand how our health is influenced by the context and choices of daily life,” Paul Tarini, the RWJF’s program officer, told Parkinson’s News Today. “The challenge is designed to solve a major problem in the field – how best to process sensor data for health interpretations.”

Roughly 5 million people around the world and one million Americans live with Parkinson’s. About 60,000 new cases are diagnosed in the U.S. each year, though healthcare providers say thousands more are either undetected or misdiagnosed. The most common method for diagnosing Parkinson’s is a 60-question test, with answers rated on a scale of 1 to 5.

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Researchers have lamented that studies of this progressive disease have been hampered by a lack of solid data.

“Because there is no single reliable test for Parkinson’s, a diagnosis is often based on subjective observations by a physician,” Ali Torkamani, PhD, director of genome informatics at the Scripps Translational Science Institute, said in 2016, when the STSI partnered with the Michael J. Fox Foundation and Intel to launch a remote monitoring study focused on Parkinson’s. “Misdiagnosis occurs in as many as 35 percent of cases, according to several clinical studies. By utilizing the power of precision medicine, we hope to create a more reliable method for screening patients exhibiting possible Parkinson’s symptoms.”

“The ability to diagnose Parkinson’s more definitively would help patients manage their care and researchers confirm that the volunteers in their trial truly have the disease they’re targeting, raising the likelihood of successful treatments passing clinical testing,” Mark Frasier, PhD, senior vice president of research programs at the Michael J. Fox Foundation, said in a 2016 release announcing the STSI study, called GADGET-PD (Genetic and Digital Diagnosis of Essential Tremor and Parkinson’s Disease). “This project’s approach to combine genetic analysis and objective measures shows promise in advancing toward that goal.”

Sage Bionetworks hopes to conclude the DREAM challenge this fall, with the winning research team due to receive $25,000 from the Michael J. Fox Foundation. Results of the challenge will be published at a later date in the journal Nature Biotechnology.

DREAM Challenges were first developed by IBM in 2006, using crowd-funding to tackle issues such as developing predictive models for disease progression or cell signaling networks.

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