Digital Tools Paint Vivid Portrait of Parkinson’s Disease
Eight years ago, University of Rochester Medical Center (URMC) researchers helped launch the first smartphone application designed to track the symptoms of Parkinson’s disease. Apple featured the application, called mPower, during a product launch highlighting the iPhone’s emerging digital health capabilities. The application has since been used in clinical trials to collect health data remotely and evaluate the effectiveness of new treatments for the disease.
New research, supported by a new $4.9 million grant from the National Institutes of Neurological Disorders and Stroke, will continue to follow a group of volunteers using mPower, telemedicine, and fitness trackers, ultimately collecting a decade’s worth of data and creating one of the longest and most detailed descriptions of the disease.
“COVID disrupted clinical research and highlighted the need for tools to conduct remote clinical trials,” said Ruth Schneider, MD, principal investigator of the new study and an associate professor in the URMC Department of Neurology. “These same tools are now enabling us to conduct decentralized clinical trials and develop digital measures to better understand and improve treatment of this complex disease.”
The new research will build upon two prior phase 3 clinical trials that evaluated the drugs israpidine and inosine as potential treatments for Parkinson’s. One of these studies employed mPower, which was developed by Ray Dorsey, MD, and Karl Kieburtz, MD, with the URMC Center for Health + Technology in partnership with Sage Bionetworks. The application employs the smartphone’s touch screen, accelerometers, gyroscopes and GPS to measure dexterity, balance and gait, tremor, and memory, providing researchers with frequent and objective data about the progression of motor and cognitive symptoms of the disease.
While the clinical trials for isradipine and inosine were not successful, the researchers ultimately collected up to three years of detailed health data including clinical assessments, survey results, brain imaging, and genetic profiles. More than 225 of the volunteers from these studies, representing 42 states and one Canadian province, agreed to continue to work with researchers. That study, called AT-HOME PD, was a collaboration between URMC, Sage Bionetworks, Massachusetts General Hospital, Northwestern University, and the Michael J. Fox Foundation for Parkinson’s Research.
The new study, called AT-HOME PD2, will continue to follow these participants for an additional three years, creating one of the most comprehensive sets of longitudinal digital health data describing the lived experience and progression of Parkinson’s disease over time. In additional to using the mPower app, participants will wear a commercially available fitness tracker –Fitbit—and a research grade wrist-worn sensor that will measure gait, sleep, and physical activity.
The goal of the research is to evaluate whether these digital tools can provide insight into mid-stage Parkinson’s disease, an understudied group that is particularly vulnerable to falls and cognitive decline, and the impact of physical activity on the progression of the disease. The tools will ultimately provide researchers with more precise ways to measure the impact of experimental therapies.
“This study will generate a dataset with approximately 10 continuous years of data on Parkinson’s progression that begins prior to use of dopaminergic medications and progresses to mid-stage Parkinson’s disease and beyond,” said Schneider. “This rich dataset will accelerate therapeutic development by filling knowledge gaps in the mid-stage Parkinson’s disease population, helping to optimize models for conducting patient-centered remote research, evaluating new methods for predicting disease outcomes, and assessing remote outcome measures.”
Additional URMC investigators in the AT-HOME PD2 study include Blanca Valdovinos, MD, Jamie Adams, MD, Chris Tarolli, MD, and Karlo Lizarraga, MD.