Non-profit biomedical research organisation, Sage Bionetworks, has released an unparalleled dataset of more than 9,500 people who participated in the Parkinson’s Mobile Parkinson’s Observatory for Worldwide, Evidence-based Research (mPower) app study over a six month period.
mPower launched in March 2015 through Apple’s ResearchKit, a platform which helps doctors and scientists quickly gather data for medical research on an on-going basis using iPhone apps.
The dataset, which consists of millions of data points collected on a nearly-continuous basis through the mPower iPhone app, will provide researchers with unprecedented insight into the daily changes in symptoms and effects of medication for people with Parkinson’s, helping to speed scientific progress toward treatment.
An estimated seven to ten million people worldwide are living with Parkinson’s, a degenerative disorder which 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 for 10 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.
Unlike traditional studies, mPower participants are able to choose who to share their data with. Sharing options include only those researchers associated with mPower, or qualified researchers worldwide. So far, over 75 percent of the more than 12,000 mPower participants chose to share their data broadly with researchers.
“An overwhelming number of mPower participants have chosen to donate their data to science. Now science must do its part. 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,” said President of Sage Bionetworks, Stephen Friend, MD, PhD.
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.
“The breadth and richness of this data demand that it not be shut away,” said Friend. “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.”
“This groundbreaking dataset is a wonderful example of how these new technologies and platforms can help us build a robust culture of health,” said Senior Programme Officer at the Robert Wood Johnson Foundation, Paul Tarini. “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.”
Sage intends to add new data from the mPower app on a regular basis. Researchers can become qualified and access the Parkinson’s database via Synapse, a data and analysis sharing platform.