Clinical Data and Informatics Core

临床数据和信息学核心

基本信息

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
项目类别：
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

项目摘要

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方位服务为了促进成功使用临床数据，用于风湿性的基础，临床和翻译研究疾病。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，患者招聘，临床信息和疾病专业知识，以促进精确医学风湿病。我们提出了以下CDI核心的目的：1）促进使用独特的临床研究数据库和生物测量，2）提供个性化的咨询服务以协助设计，临床和翻译研究的实施和分析风湿病研究，3）提供临床信息服务和创新，加速了临床的科学和运营转化研究和4）将CDI核心中的临床数据资产贡献到综合的UCSF数据中包括基因组技术和综合生物信息学核心的库。推进精度风湿性疾病中的医学将需要一种以患者为导向的方法来优化这些方法跨项目的高度专业资源。核心的关键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的国家领导者以及人类专业知识受试者研究伦理。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。其中包括需要高质量的良好表型患者带有连接生物测量的临床数据，用于风湿性疾病，例如全身性红斑狼疮，血管炎，赞助关节炎等；需要更有效地识别并招募使用患者进行临床研究与电子健康记录（EHR）相关的创新工具，尤其是那些不常见疾病或临床的工具表型；以及目前在正在进行的研究中缺乏研究基础设施的协调，导致患者招聘，数据收集和数据管理的效率低下。 CDI核心的创新包括利用强大的现有临床信息基础设施来弥合大量的鸿沟累积对特定临床风湿性疾病感兴趣的临床数据和个体研究者；开发和传播工具，以更有效，有效地使用EHR数据进行研究；和发展教育模块以加速研究界的知识获取。这这些活动的总体目标是提供关键和尖端的资源，以创造规模经济 UCSF的研究人员以及全国性的风湿性疾病临床研究。