%0 Conference Paper %A B. Johnson, Stephen %A R. Campion, Thomas %A E. Pegoraro, Noni %A Rozenblit, Leon %A Tirrell, Charles %A L. Cole, Curtis %A Hawthorne, Julie %D 2014 %T An Institutional Strategy to Support Clinical Research with Centrally Managed Custom Data Repositories %U https://figshare.com/articles/poster/An_Institutional_Strategy_to_Support_Clinical_Research_with_Centrally_Managed_Custom_Data_Repositories/1262230 %R 10.6084/m9.figshare.1262230.v2 %2 https://ndownloader.figshare.com/files/1832123 %K Prometheus Research %K WCMC %K Weill Cornell Medical College %K Clinical Research %K data management %K RexDB %K RexQL %K HTSQL %K HTRAF %K biobanks %K Centralized research infrastructure %K data-driven decision making %K data exploration %K Data Integrity %K database %K open-source %K Custom Repositories %K Regulatory compliance %K Secondary data use %K System designers %K technology %K web application %K Bioinformatics %X

Healthcare organizations face significant technical and organizational challenges to support clinical research. These barriers have historically led to fragmentation of the research enterprise, which in the extreme force individual researchers to manage their data separately. Exclusive focus on central processing can reduce opportunities to improve research productivity.

The ARCH strategy enables an institution to centralize research infrastructure for secondary data use, regulatory compliance, data transformation, quality assessment, security, needs assessment and training. Local research groups are fully empowered to collect and integrate specialized data, with customized workflow to maximize scientific coloration and research productivity. A transparent model for cost sharing ensures financial sustainability.

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