Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC)

项目概要 RTI 提议充当 Myalgic 的数据管理和协调中心 (DMCC) 脑脊髓炎/慢性疲劳综合症 (ME/CFS) 合作研究中心 (CRC)。在这个角色中， 我们将提供必要的领导力和先进的基础设施，将 CRC 团结成一个有凝聚力的组织 研究网络促进我们对病因、机制、 以及 ME/CFS 的潜在治疗方法。具体来说，我们将 (1) 培养高水平的科学严谨性、透明度、 以及 ME/CFS 研究界内的合作，提供医学和科学领导力， 将整合 CRC 和倡导伙伴的不同优势； (2) 促进广泛的科学利用 ME/CFS数据，将临床研究数据和其他数据源整合成可挖掘的资源； (3)获得新颖 通过应用先进的技术，深入了解 ME/CFS 的诊断、病因、预后和治疗 综合研究数据分析中的生物统计学和计算技术； (4)促进病人 通过积极的伙伴关系，ME/CFS社区内的参与和有效的知识传播 以及数据驱动的沟通策略； (5) 通过管理确保高质量的可重复研究 研究开发和实施过程、通用数据元素的使用以及 跨研究和研究地点的一致程序； (6) 提高 ME/CFS 研究效率， 通过向 ME/CFS CRC 提供运营、通信和后勤支持来提高生产力和影响力 网络。该应用程序具有特定的优势，可以提高网络的科学生产力：(1) DMCC 将由 Drs 领导。里克·威廉姆斯 (Rick Williams) 和彼得·罗 (Peter Rowe) 将通过以下方式促进网络合作： 提供与任何 CRC 无关的经过验证的公正领导。 (2) RTI的可扩展性 信息学平台融合了云计算和数据库联合，支持经济高效的存储 按需分析能力非常适合多个地点不同类型的大量数据。 (3) RTI 与受人尊敬的倡导/支持组织 Solve ME/CFS Initiative (SMCI) 合作，将允许使用 SMCI 注册中心支持患者招募，并启用多层数据驱动策略来改善 社区参与和信息传播。 (4) DMCC 分析核心具有以下方面的专业知识 高性能计算以及定性和定量研究经验的新颖整合 为丰富但具有挑战性的一系列领域带来了以患者为中心的视角和现代数据科学工具 标志着 ME/CFS 研究前沿的数据。

Project Summary RTI proposes to serve as the Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs). In this role, we will provide the leadership and advanced infrastructure necessary to unite the CRCs into a cohesive research Network that fosters continued significant progress in our understanding of the etiology, mechanisms, and potential treatments for ME/CFS. Specifically we will (1) foster a high level of scientific rigor, transparency, and collaboration within the ME/CFS research community by providing medical and scientific leadership that will integrate the diverse strengths of the CRCs and advocacy partners; (2) facilitate broad scientific use of ME/CFS data by integrating clinical study data and other data sources into a mineable resource; (3) gain novel insights into the diagnosis, etiology, prognosis, and treatment of ME/CFS through the application of advanced biostatistics and computing techniques in the analysis of consolidated study data; (4) promote patient engagement and effective knowledge dissemination within the ME/CFS community through active partnerships and a data-driven communications strategy; (5) ensure high-quality reproducible studies through a managed study development and implementation process, the use of common data elements, and the application of consistent procedures across studies and research sites; and (6) enhance ME/CFS research efficiency, productivity, and impact by providing operational, communications, and logistical support to the ME/CFS CRCs Network. This application has specific strengths that will enhance the scientific productivity of the Network: (1) The DMCC will be led by Drs. Rick Williams and Peter Rowe, who will promote Network collaboration by providing proven unbiased leadership that is not associated with any of the CRCs. (2) RTI's scalable informatics platform incorporates cloud computing and database federation, supporting cost-effective storage and on-demand analytic capacity ideal for large-volume data of diverse types in multiple locations. (3) RTI's partnership with respected advocacy/support organization Solve ME/CFS Initiative (SMCI), will permit use of the SMCI registry to support patient recruitment, and enable a multi-tiered data-driven strategy to improve community engagement and information dissemination. (4) The DMCC Analytics Core features expertise in high-performance computing and a novel integration of qualitative and quantitative research experience that brings a patient-oriented perspective and the tools of modern data science to the rich but challenging array of data that marks the frontier of ME/CFS research.