Sage Bionetworks, a nonprofit biomedical research organization that developed the ResearchKit app mPower, has announced that it will release the first six months of data from the app. mPower, a Parkinson's-focused app, was one of the first five ResearchKit studies .
"An overwhelming number of mPower participants have chosen to donate their data to science. Now science must do its part,” Sage Bionetworks President Stephen Friend said in a statement. “As researchers, we must step up to the plate to make sense of all this data and translate it into real change in the lives of people suffering with Parkinson’s.”
mPower participants have the option to share their data with just the researchers at Sage Bionetworks or with all qualified researchers. Of the 12,000 mPower study participants, about 9,500 participants chose to share their data with all researchers.
mPower stands for "mobile Parkinson’s observatory for worldwide, evidence-based research". The app description explains that while living with Parkinson’s disease means coping with symptoms that change daily, these changes are not tracked frequently enough. The mPower app aims to help users track their symptoms using activities including a memory game, finger tapping, speaking, and walking. The app will also collect data from wearable devices. Although the app aims to further research in Parkinson’s disease, the researchers encourage people with or without Parkinson disease to download the app.
"The breadth and richness of this data demand that it not be shut away," Friend said. "By releasing this data widely, we hope to seed a community of researchers working collaboratively to unlock the knowledge within and make new insights that help us begin to fully understand the lived experience of someone with Parkinson’s.”
In October, Dr. Ray Dorsey, the neurology expert for the mPower study, from the data were already promising.
"We’re seeing how people do on Saturdays and Sundays, how people do between 5 pm and 8 am," he said. "Heretofore we’ve had no good way of measuring that because the only way has been to get people into clinics and have them stay for hours. Now we can assess people’s symptoms across the course of the day and identify things that make their disease better or worse, or see the response to exercise or treatment. So I think we’re getting a lot of data that’s high frequency, that’s likely to be more sensitive than traditional measures and more objective than traditional measures. In many ways this is filling in large gaps in the way we currently assess Parkinson’s.”
A recent Sage Bionetworks preliminary analysis of the data found distinct patterns between medication intake and a participant’s symptoms, which could help researchers personalize care and treatment plans. Researchers also found a large variation of symptoms within the patient set, which, according to Sage Bionetworks, may help researchers pinpoint new windows of intervention.
While the current dataset released just includes the first six months (the study has been active for about a year now) Sage said it will start to release more data from mPower on a regular basis moving forward.
Earlier this week, Crisis Text Line, a 24-7 mental health texting hotline for teenagers, announced that the non-profit organization plans to share the data it has collected since launching with researchers who want to analyze it. The Crisis Text Line program offers young people free access to a texting service if they need emotional support and information from a trained specialist. Since launching in 2013, more than 13 million text messages have been exchanged across the service.