Dataset on Parkinson's disease

In March 2016 Sage Bionetworks released a dataset that captures the everyday experiences of over 9,500 people with Parkinson's disease (press release). The data described in the data paper "The mPower study, Parkinson disease mobile data collected using ResearchKit" was collected via the mPower iPhone app, where participants were presented with tasks (referred to as ‘memory’, ‘tapping’, ‘voice’, and ‘walking’ activities) and asked to fill out surveys.

Not everybody agreed to share their data broadly with the research community. Out of 14,684 verified participants 9,520 (65%) agreed to share broadly, the rest split between withdrawing from the study and agreeing to share narrowly with the team only:

Figure 1: mPower study cohort description. From http://www.nature.com/articles/sdata201611#methods

To provide proper safeguards and to balance sharing and privacy, the research team established a data governance structure. Access is granted to qualified researchers who agree to specific conditions for use, including the following:

• participants cannot be re-identified
• the data may not be redistributed
• findings need to be published in open access venues
• both participants and research team need to be acknowledged as data contributors

This effort is another example of the newly forming data sharing culture. And it uses Synapse that seems to make sharing easier from both technical and policy perspectives.