Clinical Data and Informatics Core

临床数据和信息学核心

• 批准号: 10281472
• 负责人: Jinoos Yazdany
• 金额: $ 23.6万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-21 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10281472
• 关键词: Abnormal coordination; Address; Basic Science; Bioinformatics; Biometry; Clinical; Clinical Data; Clinical Informatics; Clinical Research; Cohort Studies; Collaborations; Collection; Communities; Competence; Computer software; Consultations; Data; Data Analyses; Data Collection; Data Linkages; Databases; Diagnosis; Disease; Educational workshop; Electronic Health Record; Ensure; Epidemiologist; Epidemiology; Ethics Consultation; Faculty; Funding; Genomics; Goals; Grant; Health; Human Subject Research; Individual; Informatics; Infrastructure; International; Knowledge acquisition; Learning Module; Link; Methods; National Institute of Arthritis and Musculoskeletal and Skin Diseases; Natural History; Outcome Measure; Pathogenesis; Patient Recruitments; Patients; Phenotype; Productivity; Reproducibility; Research; Research Design; Research Ethics; Research Infrastructure; Research Personnel; Research Project Grants; Research Support; Resource Informatics; Resources; Rheumatism; Rheumatology; Risk Factors; Science; Scientist; Services; Spondylarthritis; Systemic Lupus Erythematosus; Technology; Testing; Training; Translational Research; Vasculitis; Work; base; clinical phenotype; data archive; data management; data resource; design; digital; disease phenotype; electronic data; experience; human subject; informatics infrastructure; informatics tool; innovation; interest; member; novel; operation; patient oriented; precision medicine; programs; research and development; research study; tool

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.

项目总结/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方位的服务 促进临床数据在风湿性关节炎基础、临床和转化研究中的成功使用 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 咨询，患者招募，临床信息学和疾病专业知识，以推进精准医学， 风湿病我们提出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）提供个性化的咨询服务，以协助设计， 风湿性疾病临床和转化研究的实施和分析，3）提供 临床信息学服务和创新，加速临床和 转化研究，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 库，包括基因组技术和综合生物信息学核心。提高精度 风湿性疾病的药物治疗需要以患者为导向的方法， 跨项目的高度专业化资源。核心的主要优势包括国际知名的临床 风湿病学专家，临床研究和临床信息学的国家领导人，以及人类 研究伦理学。核心服务将继续解决研究面临的一些挑战 研究风湿性疾病的社区。这些包括需要良好的表型患者， 风湿性疾病如系统性红斑狼疮，血管炎， 脊柱关节炎和其他;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）相关的创新工具，特别是那些患有罕见疾病或临床 表型;以及目前正在进行的研究之间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， 积累临床数据和对特定临床风湿性疾病感兴趣的个体研究者; 开发和传播工具，以便更有效地使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。的 这些活动的总体目标是提供关键和尖端资源，为 研究人员在加州大学旧金山分校和全国进行临床研究的风湿性疾病。