Journal of Information Systems Engineering & Management
Research Article

A knowledge federation architecture for rare disease patient registries and biobanks

Published online: 22 Mar 2016
Download: 72
View: 994

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.
---
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.
Submit My Manuscript



Phone: +31 (0)70 2190600 | E-Mail: info@lectitojournals.com

Address: Cultura Building (3rd Floor) Wassenaarseweg 20 2596CH The Hague THE NETHERLANDS

Disclaimer

This site is protected by copyright law. This site is destined for the personal or internal use of our clients and business associates, whereby it is not permitted to copy the site in any other way than by downloading it and looking at it on a single computer, and/or by printing a single hard-copy. Without previous written permission from Lectito BV, this site may not be copied, passed on, or made available on a network in any other manner.

Content Alert

Copyright © 2015-2017 Lectito BV All rights reserved.