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（CRC）。在这个角色中， 我们将提供必要的领导能力和先进的基础设施，将各临床研究中心联合成一个有凝聚力的 研究网络，促进我们对病因学，机制， 以及ME/CFS的潜在治疗方法。具体而言，我们将（1）促进高水平的科学严谨性，透明度， 通过提供医学和科学领导， 将整合CRCs和倡导合作伙伴的各种优势;（2）促进广泛的科学使用 ME/CFS数据，将临床研究数据和其他数据源整合为可挖掘的资源;（3）获得新的 深入了解ME/CFS的诊断，病因，预后和治疗，通过应用先进的 生物统计学和计算技术在分析综合研究数据;（4）促进患者 通过积极的伙伴关系，在ME/CFS社区内进行参与和有效的知识传播 和数据驱动的通信策略;（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中，使用共同的数据元素，并应用 跨研究和研究地点的一致程序;以及（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，提高生产力和影响力 网络这一应用具有将提高该网络的科学生产力的具体优势： DMCC将由Rick威廉姆斯博士和Peter Rowe博士领导，他们将通过以下方式促进网络合作： 提供与任何CRC无关的证明公正的领导。(2)RTI的可扩展性 信息平台结合了云计算和数据库联合，支持经济高效的存储 和按需分析能力，非常适合多个位置的各种类型的大量数据。(3)RTI的 与受人尊敬的倡导/支持组织Solve ME/CFS Initiative（SMCI）建立伙伴关系，将允许使用 SMCI登记研究，以支持患者招募，并实现多层次的数据驱动策略，以改善 社区参与和信息传播。(4)DMCC Analytics Core拥有以下专业知识： 高性能计算和定性和定量研究经验的新整合， 将以患者为导向的观点和现代数据科学的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。