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

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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.