First, design for data sharing : Nature Biotechnology : Nature Publishing Group 2016-03-07


"To upend current barriers to sharing clinical data and insights, we need a framework that not only accounts for choices made by trial participants but also qualifies researchers wishing to access and analyze the data. This March, Sage Bionetworks (Seattle) began sharing curated data collected from >9,000 participants of mPower, a smartphone-enabled health research study for Parkinson's disease1. The mPower study is notable as one of the first observational assessments of human health to rapidly achieve scale as a result of its design and execution purely through a smartphone interface2. To support this unique study design, we developed a novel electronic informed consent process that includes participant-determined data-sharing preferences. It is through these preferences that the new data—including self-reported outcomes and quantitative sensor data—are shared broadly for secondary analysis. 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 ..."


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Tags: oa.apps oa.sage_bionetworks oa.biomedicine oa.medicine oa.pharma oa.clinical_trials oa.editorials

Date tagged:

03/07/2016, 08:37

Date published:

03/07/2016, 03:37