The Clinical Core will support in-person and virtual research visits for three of the four Research Projects at the University of Rochester Udall Center

摘要 UR-Udall中心的临床核心能够在全国和- 本地人员评估。十年来，核心的调查人员一直在率先使用视频访问来 对帕金森病和其他神经退行性疾病患者进行表型评估。这些努力 包括23andMe、制药公司和迈克尔·J·福克斯在内的新型合作伙伴 基金会。最大的努力将39个州的166名帕金森病患者连接到一个研究“站点”。 核心将使用简单、安全的视频会议软件和廉价的网络摄像头来支持项目2 并首次对患有和不患有帕金森病的LRRK2携带者进行虚拟的、全国性的纵向研究。 临床核心还拥有进行面对面评估的丰富经验，以评估 传统措施与采用新型传感器的措施之间的关系，包括智能手机和 可穿戴传感器是项目3和4的一部分。此外，临床核心及其杰出的合作伙伴 可以在国内和国际范围内招募研究参与者。在一项智能手机研究中，超过15,000人 在7个月的时间里，我们在全国范围内招募了1600名参与者，另一次，我们从13人中招募了1600人 国家。 临床核心将由Giovanni Schifitto博士领导，他是一名由NIH资助的研究员，曾帮助领导 多项大规模临床研究工作，并将得到初级和高级临床干部的支持 具有进行远程和面对面研究评估的丰富经验的调查人员。核心意志 还包括约翰·威尔班克斯，Sage Bionetworks的首席下议院官，也是该国领先的 知情同意的思想者和实践者，以帮助指导中心的多项远程研究。 在项目和数据管理专家的支持下，临床核心将成为一个杰出的 UR-Udall中心、Udall中心网络和更广泛的PD社区的资源。

SUMMARY The UR-Udall Center's Clinical Core has the capability to conduct remote assessments nationally and in- person assessments locally. For a decade, the Core's investigators have pioneered the use of video visits to conduct phenotypic assessments of individuals with PD and other neurodegenerative conditions. These efforts have involved novel partners, including 23andMe, pharmaceutical companies, and the Michael J. Fox Foundation. The largest effort connected 166 participants with PD in 39 states all to a single research “site.” The Core will use simple, secure video conference software and inexpensive web cameras to support Project 2 and enable the first virtual, national longitudinal study of LRRK2 carriers with and without PD. The Clinical Core also has extensive experience conducting in-person assessments to evaluate the relationship between traditional measures and those conducted with novel sensors, including smartphones and wearable sensors that are part of Projects 3 and 4. In addition, the Clinical Core and its outstanding partners can recruit research participants nationally and internationally. In one smartphone study, over 15,000 individuals nationally enrolled in seven months, and in another, we recruited 1600 participants from ~13 countries. The Clinical Core will be led by Dr. Giovanni Schifitto, a NIH-funded investigator who has helped lead multiple large scale clinical research efforts, and will be supported by a cadre of junior and senior clinical investigators with extensive experience conducting remote and in-person research evaluations. The Core will also include John Wilbanks, the Chief Commons Officer at Sage Bionetworks and one of the country's leading thinkers and practitioners of informed consent, to help guide the Center's multiple remote studies. Supported by experts in project and data management, the Clinical Core is poised to be an outstanding resource for the UR-Udall Center, the network of Udall Centers, and the broader PD community.