Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) [...]
Author(s): Natter, Marc D, Quan, Justin, Ortiz, David M, Bousvaros, Athos, Ilowite, Norman T, Inman, Christi J, Marsolo, Keith, McMurry, Andrew J, Sandborg, Christy I, Schanberg, Laura E, Wallace, Carol A, Warren, Robert W, Weber, Griffin M, Mandl, Kenneth D
DOI: 10.1136/amiajnl-2012-001042