iPhone Parkinson’s study designed for sharing

Preliminary data from a clinical observational study on Parkinson’s disease conducted purely through an iPhone app interface show that, when given the choice, over three-quarters of the study participants are happy to make their data available for researchers to use in further research. Three articles published in npj Parkinson’s Disease, Scientific Data and Nature Biotechnology this week describe various aspects of the mPower study and the use of smartphones as valuable new tools in the management and understanding of the debilitating condition.

Parkinson’s has been traditionally characterized by the motor symptoms of the disease, such as tremor, altered gait and bradykinesia (slowness of movement).

In a paper in npj Parkinson’s Disease, Andrew Trister and colleagues suggest the novel approach of the mPower app can make valid assessments of function for patients with Parkinson’s, remotely collecting frequent information about daily changes in symptom severity and a patient’s sensitivity to medication.

A Data Descriptor published in Scientific Data, designed to promote wider sharing and reuse of the mPower data, shows that over 12,000 people consented to the study and more than 75% of those gave permission for their data to be used in further studies.

Finally, in a Nature Biotechnology Commentary addressing the importance of the study’s novel data-sharing consent process and the framework that qualifies researchers to access and analyse the data, John Wilbanks and Stephen Friend write: “Our hope is that by sharing these data immediately, prior even to our own 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.”

doi: 10.1038/npjparkd.2016.6

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