Clinical Data and Informatics Core

项目摘要/摘要-临床数据和信息学核心 临床数据和信息学核心(CDI)核心将为研究人员提供全面的服务 促进临床数据在风湿病的基础、临床和翻译研究中的成功使用 疾病。核心将简化临床研究基础设施，包括研究设计、研究伦理 会诊、患者招募、临床信息学和疾病专业知识，以推动精准医学在 风湿病。我们建议CDI核心的以下目标：1)促进使用独特的临床研究 数据库和生物标本，2)提供个性化咨询服务，以协助设计， 风湿病临床和转化性研究的实施和分析，3)提供 临床信息学服务和创新，加速临床和医疗服务的科学和运营 翻译研究，以及4)将CDI核心中的临床数据资产贡献到整合的UCSF数据中 包括基因组技术和集成生物信息学核心的图书馆。推进精确度 风湿性疾病的医学需要以病人为中心的方法，优化这些因素的协调。 跨项目的高度专业化的资源。Core的主要优势包括享誉国际的临床 风湿病专家，临床研究和临床信息学的国家领导者，以及人类的专业知识 受试者研究伦理学。核心服务将继续解决研究面临的一些挑战 研究风湿病的社区。这些包括对高质量的表型良好的患者的需求 风湿性疾病，如系统性红斑狼疮，血管炎， 脊椎炎和其他；需要更有效地识别和招募患者进行临床研究 与电子健康记录(EHR)相关联的创新工具，特别是那些患有罕见疾病或临床疾病的人 表型；以及目前在正在进行的研究中缺乏研究基础设施的协调，导致 患者招募、数据收集和数据管理效率低下。CDI核心的创新包括 利用强大的现有临床信息学基础设施来弥合海量 积累临床数据和对特定临床风湿病感兴趣的个人研究人员； 开发和传播工具，以便更有效和有效地利用电子健康记录数据进行研究；以及 开发教育模块，以加速研究界的知识获取。这个 这些活动的总体目标是提供关键和尖端资源，为 加州大学旧金山分校和国家的研究人员正在进行风湿性疾病的临床研究。

PROJECT SUMMARY/ABSTRACT – Clinical Data and Informatics Core The Clinical Data and Informatics Core (CDI) Core will provide researchers with access to a full range of services to facilitate successful use of clinical data for basic, clinical and translational research studies in rheumatic diseases. The Core will streamline clinical research infrastructure, including study design, research ethics consultation, patient recruitment, clinical informatics and disease expertise, to advance precision medicine in rheumatic disease. We propose the following Aims for the CDI Core: 1) To facilitate use of unique clinical study databases and biospecimens, 2) To provide individualized consultative services to assist in the design, implementation and analyses of clinical and translational research studies of rheumatic disease, 3) To provide clinical informatics services and innovations that accelerate the science and operations of clinical and translational research, and 4) To contribute clinical data assets in the CDI Core into the integrated UCSF Data Library that includes the Genomic Technology and Integrated Bioinformatics Cores. Advancing precision medicine in rheumatic diseases will require a patient-oriented approach that optimizes coordination of these highly specialized resources across projects. Key strengths of the Core include internationally renowned clinical experts in rheumatology, national leaders in clinical research and clinical informatics, and expertise in human subjects research ethics. Core services will continue to address some of the challenges facing the research community studying rheumatic diseases. These include the need for well-phenotyped patients with high-quality clinical data with linked biospecimens for rheumatic conditions such as systemic lupus erythematosus, vasculitis, spondyloarthritis and others; the need to more efficiently identify and recruit patients for clinical studies using innovative tools linked to electronic health records (EHRs), particularly those with uncommon diseases or clinical phenotypes; and the current lack of coordination of research infrastructure across ongoing studies, leading to inefficiencies in patient recruitment, data collection, and data management. Innovations of the CDI Core include leveraging robust existing clinical informatics infrastructure to bridge the divide between the vast amount of accumulating clinical data and individual investigators who are interested in specific clinical rheumatic diseases; developing and disseminating tools for the more efficient and valid use of EHR data for research; and development of educational modules to accelerate knowledge acquisition among the research community. The overall goal of these activities is to provide critical and cutting-edge resources that create economies of scale for researchers at UCSF and nationally conducting clinical research in the rheumatic diseases.