Sage uses iPhone app to gather data on Parkinsonâ€™s disease
March 15, 2016
Data on more than 9500 people with Parkinson’s disease have been collected and released using the MPower app on the iPhone by Sage Bionetworks, a Seattle-based non-profit biomedical research organisation.
The data should help speed scientific progress towards treatments. The dataset consists of millions of data points collected on a nearly continuous basis through the iPhone app and should provide researchers with unprecedented insight into the daily changes in symptoms and effects of medication for people with Parkinson’s.
Most Parkinson’s studies conducted today rely on sporadic data from small groups of people, typically fewer than 100, because of the difficulty finding people to participate.
An estimated seven to ten million people worldwide are living with Parkinson’s, a degenerative disorder that can cause tremors, speech problems and interfere with memory. The MPower app, built by Sage with support from the Robert Wood Johnson Foundation, collects data on capacities affected by Parkinson’s disease, including dexterity, balance and gait, memory, and certain vocal characteristics, through tasks that make use of iPhone sensors.
For example, to measure dexterity, participants complete a speed tapping exercise on their iPhone’s touchscreen. To evaluate speech, participants use their iPhone’s microphone to record themselves pronouncing a vowel – saying aaaaah – for ten seconds. The app also allows participants to track when each task is completed alongside the time they take their medication, to help determine the effects of that medicine on their symptoms. Participants also complete regular surveys, rating the severity of their symptoms and what they think makes them better or worse.
MPower was launched in March 2015 through Apple’s ResearchKit, which helps doctors and scientists quickly gather data for medical research on an ongoing basis using iPhone apps. Unlike traditional studies, MPower participants can choose with whom to share their data. Sharing options include only those researchers associated with MPower, or qualified researchers worldwide.
So far, over 75 per cent of the more than 12,000 MPower participants chose to share their data broadly with researchers. This consent process represents a sea of change in participant control over data sharing.
“An overwhelming number of MPower participants have chosen to donate their data to science,” said Stephen Friend, president of Sage Bionetworks. “Now science must do its part. As researchers, we must step up to the plate to make sense of all these data and translate them into real change in the lives of people suffering with Parkinson’s.”
From a preliminary analysis of the data, Sage has found enormous variation of symptoms within individuals, which could help researchers better pinpoint windows of intervention. Sage has also noted distinct patterns between medication intake and symptoms, insights that could eventually inform care and treatment regimes. By opening up the data and making them available to all researchers, Sage hopes to accelerate insights that can be implemented in the clinic and lead to improvements in the lives of people with Parkinson’s disease – insights that can only be realised with a large, open community of data scientists analysing and re-analysing the data.
“The breadth and richness of these data demand that they not be shut away,” said Friend. “By releasing these 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.”
Said Margaret Anderson, executive director at Faster Cures: “We have been watching the emergence of participant-centric research closely at Faster Cures. Sage has placed research participants right in the middle of their studies, and given them the chance not just to be part of the research but to be in the driver’s seat.”
The dataset represents the first six months of data donated by MPower participants. Sage intends to add new data from the app on a regular basis.
“This ground-breaking dataset is a wonderful example of how these new technologies and platforms can help us build a robust culture of health,” said Paul Tarini, senior programme officer at the Robert Wood Johnson Foundation. “They make it easier for more people and researchers to participate in efforts to understand diseases and how to manage them and, in turn, all of us benefit.”
Researchers can become qualified and access the Parkinson’s database via Synapse, a data and analysis sharing platform.
MPower (Mobile Parkinson’s Observatory for Worldwide, Evidence-based Research) is an iPhone app-based study notable as one of the first observational assessments of human health to achieve scale rapidly as a result of its design and execution purely through a smartphone interface.