Literature Review

Remotely Collected Data From Patients With Parkinson’s Disease Now Publicly Available



Data from the mPower study of adults with Parkinson’s disease were published online March 3 in Scientific Data. A total of 9,520 participants, including patients and controls, consented to the observational study and agreed to share their data broadly with the research community. Participants downloaded an iPhone app that recorded data about their symptoms. The first six months of data from these participants were published.

“Our hope is that by sharing these data immediately, prior even to our own complete analysis, we will shorten the time to harnessing any utility that this study’s data may hold to improve the condition of patients who suffer from this disease,” said John Wilbanks and Stephen H. Friend, MD, PhD, both of Sage Bionetworks, in a commentary published in Nature Biotechnology.

Stephen H. Friend, MD, PhD

Sage Bionetworks initiated mPower in March 2015 to evaluate the feasibility of remotely collecting information about daily changes in symptom severity and their sensitivity to medication in Parkinson’s disease. Upon enrollment, participants were able to complete seven study tasks at any time. The first task was a baseline survey. Memory, tapping, voice, and walking tasks were to be completed three times per day. Participants also were asked to respond monthly to the Parkinson’s Disease Questionnaire-8 and a subset of questions from the Unified Parkinson’s Disease Rating Scale.

The memory, tapping, voice, and walking tasks were intended to be performed immediately before the patient took medication, after the patient took medication, and at another time. In the memory activity, patients watched a random series of squares in a grid light up one by one before being asked to touch the same squares in the correct order. In the tapping task, patients used two fingers to tap two stationary points on the screen for 20 seconds. During the voice activity, patients said, “Ah,” into a microphone at a steady volume for 10 seconds. In the walking activity, patients walked 20 steps in a straight line, turned around, and stood still for 30 seconds.

In all, 8,320 participants completed at least one survey or task after joining the study. A total of 6,805 participants completed the enrollment survey, and 1,087 of them reported having received a professional diagnosis of Parkinson’s disease. Follow-up was not consistent among participants, and 898 people contributed data on at least five days during the study’s first six months. The number of days that participants contributed data was similar between people with self-reported diagnosis of Parkinson’s disease and controls.

The mPower data may help establish the baseline variability of real-world activity measurement collected with mobile phones, and may help quantify fluctuation in the symptoms of Parkinson’s disease, said the authors.

Erik Greb

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