Journal of Information Systems Engineering and Management

A knowledge federation architecture for rare disease patient registries and biobanks
Pedro Sernadela 1 * , Pedro Lopes 1, José Luís Oliveira 1
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1 University of Aveiro, PORTUGAL
* Corresponding Author
Research Article

Journal of Information Systems Engineering and Management, 2016 - Volume 1 Issue 2, pp. 83-90
https://doi.org/10.20897/lectito.201615

Published Online: 22 Mar 2016

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How to cite this article
APA 6th edition
In-text citation: (Sernadela et al., 2016)
Reference: Sernadela, P., Lopes, P., & Oliveira, J. L. (2016). A knowledge federation architecture for rare disease patient registries and biobanks. Journal of Information Systems Engineering and Management, 1(2), 83-90. https://doi.org/10.20897/lectito.201615
Vancouver
In-text citation: (1), (2), (3), etc.
Reference: Sernadela P, Lopes P, Oliveira JL. A knowledge federation architecture for rare disease patient registries and biobanks. J INFORM SYSTEMS ENG. 2016;1(2):83-90. https://doi.org/10.20897/lectito.201615
AMA 10th edition
In-text citation: (1), (2), (3), etc.
Reference: Sernadela P, Lopes P, Oliveira JL. A knowledge federation architecture for rare disease patient registries and biobanks. J INFORM SYSTEMS ENG. 2016;1(2), 83-90. https://doi.org/10.20897/lectito.201615
Chicago
In-text citation: (Sernadela et al., 2016)
Reference: Sernadela, Pedro, Pedro Lopes, and José Luís Oliveira. "A knowledge federation architecture for rare disease patient registries and biobanks". Journal of Information Systems Engineering and Management 2016 1 no. 2 (2016): 83-90. https://doi.org/10.20897/lectito.201615
Harvard
In-text citation: (Sernadela et al., 2016)
Reference: Sernadela, P., Lopes, P., and Oliveira, J. L. (2016). A knowledge federation architecture for rare disease patient registries and biobanks. Journal of Information Systems Engineering and Management, 1(2), pp. 83-90. https://doi.org/10.20897/lectito.201615
MLA
In-text citation: (Sernadela et al., 2016)
Reference: Sernadela, Pedro et al. "A knowledge federation architecture for rare disease patient registries and biobanks". Journal of Information Systems Engineering and Management, vol. 1, no. 2, 2016, pp. 83-90. https://doi.org/10.20897/lectito.201615
ABSTRACT
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 data models and procedures. As they were built with security and privacy in mind, available tools lack comprehensive data access mechanisms, thus making data sharing a complex process. To tackle these challenges, we introduce a semantic web-based architecture to connect distributed and heterogeneous registries and samples. The outcome is a unique knowledge layer, connecting miscellaneous datasets and enabling state-of-the-art semantic data sharing mechanisms.
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LICENSE
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.