Morris K. Udall Center at the University of Rochester (UR-Udall Center)

摘要 受帕金森病(PD)影响的人数在过去25年中翻了一番，预计 在接下来的25年里再翻一番。目前应对这一“大流行”的方法是不够的。试验是 不受疾病和模拟模型的影响。参与研究是繁重的，而且仅限于 居住在研究中心附近的个人。传统的PD测量是主观的、间歇性的和不敏感的 导致大规模、长时间、昂贵的试验，产生错误的疗效信号，无论是阳性还是阴性。 罗切斯特大学的尤德尔中心(UR-Udall Center)将解决这些障碍，并以 以下是： 1.一个行政核心，支持国家研究，覆盖数十万人，并培训 第一代PD研究人员横跨临床研究和计算科学 2.结合生物统计学和计算机科学专业知识的高级分析研究核心 3.一个临床核心，将在全国和地方进行虚拟和面对面的PD评估 4.四个研究项目，将涉及NINDS PD 2014年的九项建议。这些项目将： A.为PD研究社区开发预测性疾病模型和临床试验模拟工具 B.对LRRK2携带者进行美国首个虚拟自然历史队列研究 C.推出第二代智能手机研究应用程序(MPower)，计算出一款新的移动设备 帕金森病评分，可随时随地量化参与者的帕金森病症状 D.开发无源传感器，包括可穿戴传感器、视频分析和无线电波，以测量 帕金森病在现实世界中的运动和非运动特征 UR-Udall中心将开发、评估和传播促进PD的新工具和技术 研究具有一个大胆的目标，即使任何地方的任何人都能够参与研究，从 由此产生的治疗进展，并接受护理。

SUMMARY 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.