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The primary goal of a registry is to facilitate the collection of patient-specific treatment and outcome data allowing analyses of the comparative effectiveness of different treatment strategies and approaches. Registries can support analyses of outcome, utilization, quality, safety, and cost provide clinicians and researchers with tools and data to benchmark and improve the quality of practice.
Typically, registries require contributors to enter data primarily using laborious manual data entry processes. We think this is an outdated and inhibiting approach, making participation unnecessarily laborious. Registries should support flexible collaboration among clinicians and scientists.
Our registry solution supports automated abstraction and aggregation of clinical data. It allows scientists to collaboratively define and rapidly evolve their standardized data model for submissions. Contributors to the registry can simply relate data elements from their source clinical information systems to the required submission format greatly easing the burden of collecting information from source systems. More importantly, participants need to manually enter only those data that cannot be exported from electronic sources allowing continued participation even as the submissions standards evolve. Perhaps most important, our registry solution can gather patient reported outcome data and integrate it with clinical data. This integrated view offers the best foundation for determining how to best treat patients and to rapidly advance the standard of care over time.