Human Subjects and Clinical Phenotyping Core

人类受试者和临床表型核心

基本信息

项目摘要

PROJECT SUMMARY/ABSTRACT – Human Subjects and Clinical Phenotyping Core The Human Subjects and Clinical Phenotyping (HSCP) Core will provide researchers with access to a full range of services to facilitate successful identification and recruitment of human subjects 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 HSCP Core: 1) To provide consultation on human subjects study design, data collection, outcome measures, and research ethics for basic, clinical and translational research studies of rheumatic disease; 2) To facilitate identification of human clinical phenotypes for research studies, leveraging collaborations between nationally recognized disease experts and clinical informaticists; 3) To offer state-of-the art data retrieval and management resources, including construction of electronic health record-enabled registries; and 4) To coordinate and provide resources for human subject recruitment and biospecimen collection. 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, expertise in human subjects research ethics, and unique expertise in including patients from high-risk and diverse populations, including racial/ethnic minorities and those with low socioeconomic status. HSCP Core services address some of the current challenges facing the research community studying rheumatic diseases. These include the need for highly accurate clinical phenotyping given the extreme heterogeneity of disease manifestations in rheumatic diseases such as systemic lupus erythematosus, vasculitis, scleroderma and others; the need to more efficiently identify and recruit patients for clinical studies, particularly those with uncommon or rare 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 HSCP 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 phenotypes of rheumatic diseases; querying “big data” from electronic health records to construct registries using specialized methods; and “match-making” between investigators and resources. The overall goal of these activities is to provide critical and cutting edge resources that create economies of scale for researchers conducting human subjects research in the rheumatic diseases.
项目总结/摘要-人类受试者和临床表型核心 人类受试者和临床表型(HSCP)核心将为研究人员提供完整的 一系列服务,以促进成功识别和招募人类受试者进行基础、临床和 风湿性疾病的转化研究。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,以推进风湿性疾病的精准医学。我们建议HSCP的目标如下 核心:1)提供关于人类受试者研究设计、数据收集、结局测量的咨询, 风湿性疾病基础、临床和转化研究的研究伦理; 2)促进 为研究确定人类临床表型,利用国家之间的合作 公认的疾病专家和临床信息学家; 3)提供最先进的数据检索和 管理资源,包括建立电子健康记录启用登记册;以及4) 协调并提供人类受试者招募和生物标本采集的资源。推进 风湿性疾病的精准医疗需要以患者为导向的方法, 这些高度专业化的资源。核心的主要优势包括国际知名的 风湿病学的临床专家,临床研究和临床信息学的国家领导者, 人类受试者的研究伦理,以及包括高风险和多样化患者的独特专业知识 人口,包括少数种族/民族和社会经济地位较低的人。HSCP核心服务 解决目前风湿病研究界面临的一些挑战。这些 包括鉴于疾病的极端异质性,需要高度准确的临床表型 风湿性疾病如系统性红斑狼疮、血管炎、硬皮病和 其他;需要更有效地识别和招募患者进行临床研究,特别是那些 不常见或罕见疾病或临床表型;以及目前缺乏研究协调 正在进行的研究中的基础设施,导致患者招募、数据收集和数据收集效率低下 管理HSCP核心的创新包括利用强大的现有临床信息学 基础设施,以弥合大量积累的临床数据和个人之间的鸿沟 对风湿性疾病的特定临床表型感兴趣的研究人员;查询来自 电子健康记录,使用专门方法建立登记册; 调查人员和资源。这些活动的总体目标是提供关键和前沿的 资源,为研究人员进行人类受试者研究创造规模经济, 风湿性疾病

项目成果

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Patricia P Katz其他文献

EMOTIONAL, PSYCHOLOGICAL, AND MARITAL STRESS IN MALE FACTOR INFERTILITY
  • DOI:
    10.1016/s0022-5347(08)61748-6
  • 发表时间:
    2008-04-01
  • 期刊:
  • 影响因子:
  • 作者:
    James F Smith;Paul J Turek;Maria E Bleil;Thomas J Walsh;Holly Wing;Lauri A Pasch;Patricia P Katz
  • 通讯作者:
    Patricia P Katz

Patricia P Katz的其他文献

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{{ truncateString('Patricia P Katz', 18)}}的其他基金

Sleep Disturbance in Rheumatoid Arthritis: Phenotypes, Causes, and Impact
类风湿性关节炎的睡眠障碍:表型、原因和影响
  • 批准号:
    10237308
  • 财政年份:
    2017
  • 资助金额:
    $ 23.3万
  • 项目类别:
Sleep Disturbance in Rheumatoid Arthritis: Phenotypes, Causes, and Impact
类风湿性关节炎的睡眠障碍:表型、原因和影响
  • 批准号:
    9756144
  • 财政年份:
    2017
  • 资助金额:
    $ 23.3万
  • 项目类别:
Sleep Disturbance in Rheumatoid Arthritis: Phenotypes, Causes, and Impact
类风湿性关节炎的睡眠障碍:表型、原因和影响
  • 批准号:
    9521532
  • 财政年份:
    2017
  • 资助金额:
    $ 23.3万
  • 项目类别:
Methodology Core
方法论核心
  • 批准号:
    7662039
  • 财政年份:
    2008
  • 资助金额:
    $ 23.3万
  • 项目类别:
Body Composition and Disability in RA and SLE
RA 和 SLE 的身体成分和残疾
  • 批准号:
    7612006
  • 财政年份:
    2008
  • 资助金额:
    $ 23.3万
  • 项目类别:
Body Composition and Disability in RA and SLE
RA 和 SLE 的身体成分和残疾
  • 批准号:
    7492408
  • 财政年份:
    2007
  • 资助金额:
    $ 23.3万
  • 项目类别:
Methodology Core
方法论核心
  • 批准号:
    7492401
  • 财政年份:
    2007
  • 资助金额:
    $ 23.3万
  • 项目类别:
Methodology Core
方法论核心
  • 批准号:
    8293901
  • 财政年份:
    2006
  • 资助金额:
    $ 23.3万
  • 项目类别:
Methodology Core
方法论核心
  • 批准号:
    8849847
  • 财政年份:
    2006
  • 资助金额:
    $ 23.3万
  • 项目类别:
Methodology Core
方法论核心
  • 批准号:
    8469002
  • 财政年份:
    2006
  • 资助金额:
    $ 23.3万
  • 项目类别:

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