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A knowledge federation architecture for rare disease patient registries and biobanks
2016
Journal of Information Systems Engineering & Management
Patient registries are a source of standardized electronic patient information. These records are vital to identify and coordinate a proper cohort, especially for the rare disease domain. Likeness, biobanks are currently an essential instrument for biomedical research, since they provide the very first piece of the biomedical research cycle, i.e. the biological samples. However, connection between rare diseases, patient registries and biobanks has been very limited, due to the lack of common
doi:10.20897/lectito.201615
fatcat:ufbfgivervge3jsvephdus4ewu