Seattle, WA —Sage Bionetworks, a nonprofit biomedical research organization, today released an unparalleled dataset that captures the everyday experiences of more than 9,500 people to help speed scientific progress toward treatments for people with Parkinson's disease. The dataset, which consists of millions of data points collected on a nearly-continuous basis through the iPhone app mPower, will 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. The scale and scope of the mPower data are detailed in a paper published today in Nature Scientific Data and an accompanying editorial in NPJ Parkinson's Disease.
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—saying Aaaaah—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.
mPower 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 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. This cutting-edge consent process, which is the driving force behind the decision to widely release the mPower data set, is outlined in a third paper published today in Nature Biotechnology, and 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. 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 Stephen Friend, MD, PhD, president of Sage Bionetworks.
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 it available to all researchers, Sage hopes to accelerate new 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 realized with a large, open community of data scientists analyzing and re-analyzing the data.
"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."
Said Margaret Anderson, Executive Director at Faster Cures: "We have been watching the emergence of participant-centric research closely at FasterCures. 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 released today represents the first six months of data donated by mPower participants. Sage intends to add new data from the mPower app on a regular basis.
"This groundbreaking 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 program 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.
Sage plans to host a webinar on March 8 to showcase the data and guide researchers on how to access it. Anyone interested in the data or the upcoming webinar can find updates on the mPower Public Researcher Portal wiki.
About Sage Bionetworks
Sage Bionetworks is a 501(c) (3) nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. Sage Bionetworks strives to activate patients and to incentivize scientists, funders and researchers to work in fundamentally new ways in order to shape research, accelerate access to knowledge and transform human health. It is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships. More information is available at http://www.sagebase.org.
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 rapidly achieve scale as a result of its design and execution purely through a smartphone interface.