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: 10613696
• 负责人: Linda Morris Brown
• 金额: $ 10万
• 依托单位: RESEARCH TRIANGLE INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-07-01 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10613696
• 关键词: Advocacy; Affect; Biometry; Chronic Fatigue Syndrome; Clinical Research; Cloud Computing; Collaborations; Common Data Element; Communication; Communities; Complex; Computer Systems; Data; Data Science; Data Sources; Databases; Development; Diagnosis; Disease; Ensure; Etiology; Fostering; High Performance Computing; Informatics; Information Dissemination; Infrastructure; Knowledge; Leadership; Location; Logistics; Medical; Modernization; Patient Recruitments; Persons; Procedures; Productivity; Prognosis; Registries; Reproducibility; Research; Research Personnel; Resources; Role; Site; Techniques; analytical tool; cohesion; community engagement; cost effective; data management; diverse data; effective therapy; experience; frontier; implementation process; improved; insight; novel; patient engagement; patient oriented; 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建议作为肌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）协作研究中心（CRCS）。在这个角色中， 我们将提供将CRC团结成凝聚力的领导和先进的基础设施 研究网络在我们对病因，机制， 以及对我/CFS的潜在治疗方法。具体而言，我们将（1）培养高水平的科学严谨性，透明度， 以及在ME/CFS研究社区内的合作，提供医学和科学领导 将融合CRC和倡导伙伴的各种优势； （2）促进广泛的科学使用 ME/CFS数据通过将临床研究数据和其他数据源集成到可最小的资源中； （3）获取小说 通过应用高级诊断，病因，预后和对ME/CF的治疗的见解 合并研究数据分析中的生物统计学和计算技术； （4）促进患者 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 以及数据驱动的通信策略； （5）通过托管确保高质量的可重复研究 研究开发和实施过程，使用常见数据元素以及应用 跨研究和研究地点的一致程序； （6）提高我/CFS的研究效率， 生产力和影响通过向ME/CFS CRC提供运营，沟通和后勤支持来影响 网络。该应用具有特定的优势，可以提高网络的科学生产力：（1） DMCC将由博士领导。里克·威廉姆斯（Rick Williams）和彼得·罗（Peter Rowe），他们将促进网络合作 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 Informatics平台包含云计算和数据库联合会，支持具有成本效益的存储 以及按需分析能力非常适合多个位置中各种类型的大量数据。 （3）RTI 与受尊敬的倡导/支持组织的合作伙伴关系解决ME/CFS计划（SMCI），将允许使用 SMCI注册表以支持患者招聘，并启用多层数据驱动策略以改进 社区参与和信息传播。 （4）DMCC Analytics核心具有专业知识 高性能计算以及定性和定量研究经验的新颖集成 将面向患者的观点和现代数据科学的工具带给了丰富但具有挑战性的阵列 标志着ME/CFS研究的前沿的数据。