The number of people affected by Parkinson disease (PD) has doubled over the past 25 years and is projected to double again in the next 25. Current approaches to addressing this ?pandemic? are inadequate. Trials are not informed by disease and simulation models. Participation in research is burdensome and is limited to individuals who live near research centers. Traditional PD measures are subjective, episodic, and insensitive resulting in large, long, expensive trials that generate false signals of efficacy, both positive and negative. A Udall Center at the University of Rochester (UR-Udall Center) will address these barriers and feature the following: 1. An Administrative Core that supports national research studies, reaches hundreds of thousands, and trains the first generation of PD investigators spanning clinical research and computational science 2. An Advanced Analytics Research Core that combines biostatistical and computer science expertise 3. A Clinical Core that will conduct both virtual and in-person PD assessments nationally and locally 4. Four research projects that will address nine NINDS PD 2014 recommendations. These projects will: a. Develop predictive disease models and clinical trial simulation tools for the PD research community b. Conduct the first U.S. virtual natural history cohort study of LRRK2 carriers c. Advance a second-generation smartphone research application (mPower) and calculate a novel mobile Parkinson disease score that quantifies PD symptoms from participants anywhere, anytime d. Develop passive sensors, including wearable sensors, video analytics, and radio waves, to measure the motor and non-motor features of PD in real-world settings The UR-Udall Center will develop, evaluate, and disseminate novel tools and technologies to accelerate PD research with an audacious goal of enabling anyone anywhere to participate in research, to benefit from the resulting therapeutic advances, and to receive care.
Anyone anywhere should be able to participate in research, benefit from resulting therapeutic advances, and receive care for Parkinson disease. The Udall Center at the University of Rochester will help meet this challenge by developing, evaluating, and disseminating new tools, including disease models, virtual visits, and objective measures of PD. This new approach will engage participants nationally, accelerate evaluation of new therapies, and help address the rising burden of Parkinson disease.
