mPower app is the first to use Apple’s new CareKit platform to deliver better insights to Parkinson’s disease patients
Seattle, WA —Sage Bionetworks, a nonprofit biomedical research organization, today released an updated version of its mPower iPhone study that introduces better analytics as well as improved user interface and functionality gleaned from research participants’ feedback. Sage also announced today that mPower, which tracks symptom variation in Parkinson’s disease and uses Apple’s ResearchKit framework, will be the first app to use CareKit, a new open-source platform from Apple, turning the mPower study into a valuable tool to help better inform patients about their symptoms.
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. 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 allows researchers to follow day-to-day fluctuations in Parkinson’s disease symptoms and allows for insights that would be impossible to achieve when a patient is only being examined every six months,” said Stephen Friend, MD, PhD, president of Sage Bionetworks. “This kind of data has never been tracked and captured before, and now with the help of CareKit, we can provide quantitative insights to inform the dialog a person has with a health professional about his or her own disease.”
mPower launched in March 2015 using Apple’s open-source ResearchKit framework, which helps scientists and clinicians quickly gather data for medical research using iPhone apps. Unlike traditional studies, mPower participants are able to choose how their data is shared. 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, funded in part by The Leona M. and Harry B. Helmsley Charitable Trust, which is the driving force behind the decision to widely release the mPower data set, is outlined in a paper published March 3, 2016 in Nature Biotechnology, and represents a sea change in participant control over data sharing.
“With mPower, the participant is increasingly at the center of the study, representing a disruptive model for conducting research that has application well beyond Parkinson’s disease,” said Ray Dorsey, MD, professor of neurology at the University of Rochester Medical Center. “mPower has been an unprecedented success, with thousands of individuals signed up to participate in a research study conducted entirely over an iPhone without having to visit a single research site. Participants can conduct assessments anytime, anywhere, receive real-time feedback, and can identify what is making their symptoms better or worse.”
The mPower research team has received more than twenty thousand suggestions from mPower participants about what improves or worsens their Parkinson’s disease symptoms and about how the iPhone app can be improved. mPower has enrolled participants from all 50 states in the study, and informed researchers led by Sage Bionetworks about new and better ways to track medication use, complete tasks within the app, and convey information back to the participant. The updated mPower app will also now track resting tremor, a shaking or oscillating movement that is often first experienced in the early stages of Parkinson’s disease.
Dozens of research groups have signed up to access the Parkinson’s database via Synapse, a data and analysis sharing platform. Sage hosted a webinar on March 8 to showcase the data and guide researchers on how to access it. Anyone interested in the data or a replay of the webinar can find updates on the mPower Public Researcher Portal wiki.
The updated version of the mPower app features a new dashboard that reflects a robust assessment of the participant’s score on each of the activities in the study. Additionally, patients with Parkinson’s disease on medications will be given the opportunity to request a personalized report of their activity scores compared with others in the study. “The ability for an individual to track their own disease with these new metrics can shift their understanding of how their symptoms might change from day-to-day or week-to-week.” said Andrew Trister, MD, PhD, Senior Physician at Sage Bionetworks.
“For a Parkinson’s patient, life at home is vastly different than what the doctor sees in the exam room. With mPower, we now have the opportunity to learn more about how our patients function in the real world. That’s tremendously powerful,” said Caroline Tanner, MD, PhD, Director of the Parkinson’s Disease Research Education and Clinical Center at the San Francisco Veteran’s Affairs Medical Center and Professor-in-Residence at the University of California San Francisco. “The large volume of participants in the study was impressive and showed the real utility of the app as a disease management tool from a clinical and research perspective. We need to move in this direction to increase patient participation, make clinical trials more representative, and speed the development of new medical interventions.”
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.sagebio2018.wpengine.com.
Sage Bionetworks has developed or co-developed and provides the data hosting platform for a series of the iPhone sensor-based ResearchKit apps, including: mPower, Share the Journey: Mind, Body and Wellness After Breast Cancer, MoleMapper, and TeamStudy.
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.
Contact: Diane Gary