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

肌痛性脑脊髓炎/慢性疲劳综合症数据管理和协调中心 (DMCC) (ME/CFS) 合作研究中心 (CRC)

• 批准号: 10194625
• 负责人: Linda Morris Brown
• 金额: $ 112.36万
• 依托单位: RESEARCH TRIANGLE INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-25 至 2023-06-14
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10194625
• 关键词: Address; Advocacy; Affect; Agreement; Biometry; Chronic Fatigue Syndrome; Clinical Research; Cloud Computing; Collaborations; Common Data Element; Communication; Communities; Complex; Computer Systems; Computer software; Data; Data Science; Data Scientist; Data Sources; Databases; Decision Making; Development; Diagnosis; Disease; Doctor of Philosophy; Documentation; Effectiveness; Ensure; Etiology; Event; Fostering; Future; Goals; High Performance Computing; Incubators; Informatics; Information Dissemination; Infrastructure; International; Knowledge; Lead; Leadership; Location; Logistics; Manuals; Mediator of activation protein; Medical; Methods; Mining; Modernization; Participant; Patient Care; Patient Recruitments; Policies; Preparation; Principal Investigator; Procedures; Process; Productivity; Prognosis; Registries; Reproducibility; Research; Research Design; Research Methodology; Research Personnel; Resources; Role; Schedule; Site; Structure; System; Systems Analysis; Techniques; Technology; Trust; United States National Institutes of Health; Voice; Work; advocacy organizations; analytical tool; cohesion; collaborative environment; community engagement; complex data; computing resources; cost; cost effective; data management; diverse data; effective therapy; experience; flexibility; frontier; implementation process; improved; innovation; insight; meetings; multidisciplinary; novel; open source; operation; outreach; patient engagement; patient oriented; patient registry; recruit; skills; symposium; tool

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.

项目摘要 RTI建议作为Myalgic的数据管理和协调中心(DMCC) 脑脊髓炎/慢性疲劳综合征(ME/CFS)合作研究中心(CRCs)。在这个角色中， 我们将提供必要的领导和先进的基础设施，将社区合作委员会团结成一个有凝聚力的 研究网络，促进了我们对病因，机制， 以及治疗ME/CFS的可能方法。具体地说，我们将(1)培养高度的科学严谨性、透明度、 通过提供医疗和科学领导，在ME/CFS研究社区内进行 将整合社区合作中心和倡导伙伴的不同优势；(2)促进广泛科学地使用 将临床研究数据和其他数据源整合为可挖掘的资源；(3)获得新颖性 应用高级技术对ME/CFS的诊断、病因、预后和治疗的认识 生物统计学和计算技术在综合研究数据分析中的应用；(4)促进患者 通过积极的伙伴关系在ME/CFS社区内参与和有效传播知识 和数据驱动的通信策略；(5)通过托管的 研究开发和实施过程，通用数据元素的使用，以及 跨研究和研究站点的一致程序；和(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，提高工作效率和影响 网络。此应用程序具有特定的优势，将提高网络的科学生产力：(1) DMCC将由Rick Williams博士和Peter Rowe博士领导，他们将通过 提供与任何CRC无关的经过证明的不偏不倚的领导力。(2)RTI可伸缩 Informatics平台整合了云计算和数据库联合，支持经济高效的存储 以及按需分析功能，非常适合于多个位置的各种类型的大容量数据。(3)RTI‘s 与受人尊敬的倡导/支持组织解决ME/CFS倡议(SMCI)建立伙伴关系，将允许使用 SMCI登记处支持患者招募，并支持多层数据驱动战略以改进 社区参与和信息传播。(4)DMCC Analytics的核心功能是 高性能计算以及定性和定量研究体验的全新集成， 将以患者为中心的观点和现代数据科学工具带到丰富但具有挑战性的 这些数据标志着ME/CFS研究的前沿。