Sage Bionetworks and The Michael J. Fox Foundation Collaborate to Amplify Parkinson’s Patient Voice in Research

March 09,2015

• Parkinson mPower iPhone app-based clinical study provides intuitive platform for empowering research participants as partners to illuminate Parkinson’s disease symptom variation
• mPower uses ResearchKit, a new software framework announced today by Apple that turns iPhone into a powerful tool for medical research
• Fox Insight virtual clinical study offers every Parkinson’s patient the opportunity to securely contribute data to speed the cure

Sage Bionetworks, a nonprofit biomedical research organization, in collaboration with The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today announced the launch of Parkinson mPower (mPower), a patient-centered, iPhone app-based study of symptom variation in Parkinson’s disease.

mPower (Mobile Parkinson Observatory for Worldwide, Evidence-based Research) uses the new ResearchKit software framework announced today by Apple to make it easy for people with Parkinson’s disease to contribute data to researchers investigating symptom variation. ResearchKit turns iPhone into a powerful tool for medical research by enabling participants to complete tasks or submit surveys right from the mPower app. This new software framework delivers a simple way to present study participants with an interactive informed consent process, which helps explain the study's purpose, how data will be used and the app's privacy policy.

MJFF also announced the launch of Fox Insight, a Web-based virtual clinical study open to individuals of any age, both with and without Parkinson’s disease, worldwide. Later this year, data collected from participants who enroll in both mPower and Fox Insight will be used to validate the power of these two approaches in accelerating Parkinson’s disease research.

“MJFF recognizes patients and their families and loved ones as vital partners in Parkinson’s research,” said Todd Sherer, PhD, chief executive officer of MJFF. “Technologies such as ResearchKit, in combination with the mPower app and Fox Insight study, expand the opportunity for these key stakeholders to propel research forward by contributing data from their daily experience.”

mPower: App-Based Study of Parkinson’s Disease Variation

mPower is a unique, iPhone app-based study developed in collaboration with Ray Dorsey, MD, at the University of Rochester and Max Little, PhD, at Aston University, United Kingdom. By combining surveys and tasks that make use of iPhone sensors to collect data on abilities affected by Parkinson’s disease, including dexterity, balance/gait, and certain vocal characteristics, mPower aims to offer insight into the variability of Parkinson’s. The study will also highlight how mobile devices and sensors can help measure the disease and its progression, advancing research and care practices and ultimately helping to improve quality of life for people with Parkinson’s.

“Researchers who have made the effort to work together in the kinds of communities enabled by Sage’s platforms are becoming massively more productive,” said Stephen Friend, MD, PhD, president of Sage Bionetworks and mPower principal investigator. “But we need more data. In a traditional clinical study, you’d be thrilled to find 500 research ‘subjects.’ But imagine what is possible when you can quickly and reliably activate 20,000 research ‘partners.’ More importantly, participants need to be equal partners and be able to track changes in their own symptoms. It is through sharing insights and data among patients and researchers that we all find ‘windows of intervention.’”

mPower will collect real-time, objective data through a series of well-validated tasks. The app will remind users to complete the tasks before and after taking medication, and at the end of each day. The study also will collect additional patient-reported data, such as from wearable devices and surveys.

“We know that Parkinson’s disease symptoms fluctuate over the course of a day, or a week, but that has never been measured objectively,” said Dorsey, co-director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Center. “The mPower study will enable us to learn from patients, and we’ll be able to give information back to patients so they can manage their conditions regardless of where they live and regardless of their mobility.”

Sage Bionetworks is a strong proponent of open-source innovation. As such, participants in the mPower study can choose to make their data available for future studies conducted by researchers worldwide.

In addition to Dorsey and Little, Sage Bionetworks, led by senior physician Andrew Trister, MD, PhD, was advised in development of mPower by Karl Kieburtz, MD, MPH, at the University of Rochester, Caroline Tanner, MD, PhD, at the University of California San Francisco, and Bas Bloem, MD, PhD, at Radboud University Medical Centre in Nijmegen, the Netherlands.

mPower is available for download today on the App Store. The mPower study is open to all U.S. residents over age 18, regardless of a diagnosis of Parkinson’s disease.

Fox Insight: The Patient Experience Fueling Research

Fox Insight (foxinsight.org) is a virtual clinical study aiming to gather an unprecedented dataset and provide research with a holistic view of the lived experience of Parkinson’s disease. Fox Insight seeks to collect user-generated data gathered initially through surveys and “virtual clinic visits.” Over time, the site will evolve to work in concert with apps such as mPower, wearable computing, and other emerging technologies for increasingly passive and non-burdensome data collection from patients and control volunteers around the world. The study is open to any Parkinson’s patient with a computer and access to the Internet, as well as to individuals who do not have Parkinson’s disease.

The goal is to capture and analyze clinical data that can contribute to broader understanding of Parkinson’s, help establish reliable outcome measures for drug development, replace outdated clinical patient assessments and accumulate critical masses of data large enough to reveal previously undetectable aspects of PD and open up new avenues of PD research.

Core to the MJFF philosophy, all data collected through Fox Insight will be de-identified and made available to researchers worldwide for independent studies. Making this data available to the research community at large can rapidly accelerate progress by reducing cost and effort spent across individual projects and promoting replicable results.

mPower/Fox Insight 2015 Combined Study

Later in 2015, MJFF and Sage Bionetworks, along with Sage’s mPower collaborators, will jointly conduct a study of participants contributing data through both mPower and the Fox Insight platform. The combined study aims to amplify the voice of Parkinson’s patients and elevate their role as partners in research.

mPower participants with a diagnosis of Parkinson’s disease will be given the opportunity to consent to provide their data to the combined study. Additionally, MJFF will make Fox Insight users aware of the opportunity to download the mPower app and participate in the combined study.

Pending results of the combined study, MJFF will further develop and customize mPower to leverage the potential synergies of the mPower mobile app study platform and the Fox Insight platform.

A Commitment to Developing Emerging Technologies for Patient Benefit

Sage Bionetworks works to redefine how complex biological data is gathered, shared and analyzed. Through Sage’s efforts, patients and researchers become partners and together accelerate discoveries for patient benefit.

The Michael J. Fox Foundation is committed to developing emerging technologies for the benefit of Parkinson’s patients. In August 2014, the Foundation announced a collaboration with Intel Corporation to develop big data analytics and wearable technologies to speed Parkinson’s drug development. This ongoing effort is an important step in enabling researchers and physicians to measure progression of the disease and to speed progress toward breakthroughs in drug development.

About The Michael J. Fox Foundation for Parkinson’s Research

As the world’s largest nonprofit funder of Parkinson’s research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson’s disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson’s patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $450 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson’s research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson’s disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson’s awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.

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.