SEATTLE–(BUSINESS WIRE)–Sage Bionetworks, a nonprofit biomedical research organization, together with collaborators Ray Dorsey, MD, at the University of Rochester and Max Little, PhD, at Aston University in the United Kingdom, today announced the launch of Parkinson mPower (“mPower”), a patient-centered iPhone app-based study of symptom variation in Parkinson’s disease. The study is sponsored by Sage with funding from the Robert Wood Johnson Foundation.
mPower uses the new ResearchKit software framework announced today by Apple to make it easy for researchers to gather data more frequently and more accurately from participants using iPhone apps. ResearchKit enables participants to easily complete tasks or submit surveys right from the mPower app and delivers a simple way to present participants with an interactive informed consent process. mPower utilizes Sage Bionetworks’ Bridge server platform.
“One reason to build these apps and run these studies is to see whether we can turn anecdotes into signals, and by generating signals find windows for intervention,” said Stephen Friend, MD, PhD, president of Sage Bionetworks and mPower principal investigator. “We’re most interested in disease variations, and the hourly, daily, or weekly ebb and flow of symptoms that are not being tracked and completely missed by biannual visits to the doctor.”
“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 Friend. “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 use technologies in iPhone to collect real-time, objective data through a series of well-validated tasks designed to assess and measure tremor, balance and gait, certain vocal characteristics, and memory, before and after taking medication and at the end of each day in a large and diverse set of Parkinson’s disease patients. The study will collect additional patient-reported data, including data from wearable devices and surveys. The data-collection tasks were pioneered and validated by Max Little, PhD, a mathematician and lecturer at Aston University.
“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 Ray Dorsey, MD, Professor of Neurology and 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.”
The University of Rochester Medical Center is home to one of nation’s largest Parkinson’s disease programs. Approximately 100 individuals – physicians, scientists, and research staff – are involved in both treating patients with the disease and investigating new therapies. Over the last 30 years, researchers there have played a leading role in helping bring to market four new drugs to treat Parkinson’s. Dr. Dorsey has been a pioneer in the use of telemedicine to increase access to specialized care for individuals who suffer from the disease. The new app is an extension of these efforts to empower people with Parkinson’s to participate in research and help scientists and clinicians develop a more complete understanding of the disease.
“We hope the mPower app will re-engage a person with Parkinson’s disease, and by that engagement research partners will begin to notice things about the patterns of their disease and interventions,” said Andrew Trister, MD, PhD, senior physician at Sage Bionetworks. “Once we understand more about the daily lives of people living with Parkinson’s, and those modulators that might make a person feel better or feel worse, then that knowledge can be applied by others.”
“Physicians who dedicate their lives to improving the quality of life for people with Parkinson’s still have no idea how patients are actually functioning at home,” said Professor Bas Bloem, MD, PhD, medical director of the Parkinson’s Center of Excellence at the Radboud University Medical Center in Nijmegen, The Netherlands. “mPower will, for the first time, give us a real perspective on patients’ everyday functioning so we can deliver much better, tailored care.”
“If you are carrying around an iPhone, you are carrying around the potential to collect a great deal of information about yourself and about your health,” said Arno Klein, PhD, director of neuroimaging and SIMPL(E), which seeks and interprets meaningful patterns and latent explanations in data, at Sage Bionetworks. “We know so little about symptom variation in Parkinson’s disease, and so the point of this project is not to presume to know exactly what data to collect from a patient according to a pre-specified hypothesis, but instead to work with patients to learn about the disease, with the app serving as an intermediary.”
Beyond improving individuals’ health, the data generated by mPower could enable researchers to decrease the costs associated with future Parkinson’s disease clinical trials by better understanding disease phenotypes. “What might now need to be a multi-year study involving a thousand patients might become a shorter study involving fewer patients, if one really understood the subtle fluctuations of individuals’ disease and how those individuals broke out into subpopulations, and were able to look at the derivative of those fluctuations,” said Friend.
“There is untapped, latent demand for tools by which individuals can measure the course of their disease and get feedback on how they’re doing,” said Dorsey. “To have a dedicated Parkinson’s disease app backed by validated research, that will allow patients to engage with their care and get feedback on their condition, is amazing. And to make that data, in the aggregate, publicly available for research is heartening. Five years ago it would have been inconceivable.”
“A Parkinson disease patient is more likely to know his or her cholesterol number than their tremor score, and many Parkinson’s patients aren’t regularly seen by a neurologist. But if a patient that might not be very mobile, or who lives far from a specialist, can use an app to figure that out, independently of having to go to the doctor’s office and fill out three thousand forms, that’s a major advance,” said Dorsey.