Journal article
A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry
Human Mutation, Vol.33(10), pp.E2356-E2366
2012
Abstract
There is a need to develop Internet-based rare disease registries to support health care stakeholders to deliver improved quality patient outcomes. Such systems should be architected to enable multiple-level access by a range of user groups within a region or across regional/country borders in a secure and private way. However, this functionality is currently not available in many existing systems. A new approach to the design of an Internet-based architecture for disease registries has been developed for patients with clinical and genetic data in geographical disparate locations. The system addresses issues of multiple-level access by key stakeholders, security and privacy. The system has been successfully adopted for specific rare diseases in Australia and is open source. The results of this work demonstrate that it is feasible to design an open source Internet-based disease registry system in a scalable and customizable fashion and designed to facilitate interoperability with other systems.
Details
- Title
- A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry
- Authors/Creators
- M.I. Bellgard (Author/Creator) - Murdoch UniversityA. Macgregor (Author/Creator) - Murdoch UniversityF. Janon (Author/Creator) - Murdoch UniversityA. Harvey (Author/Creator) - Murdoch UniversityP. O'Leary (Author/Creator)A. Hunter (Author/Creator) - Murdoch UniversityH. Dawkins (Author/Creator) - Department of Health and Aged Care
- Publication Details
- Human Mutation, Vol.33(10), pp.E2356-E2366
- Publisher
- John Wiley & Sons Inc.
- Identifiers
- 991005544744607891
- Copyright
- © 2012 Wiley Periodicals, Inc.
- Murdoch Affiliation
- Centre for Comparative Genomics
- Language
- English
- Resource Type
- Journal article
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- Citation topics
- 1 Clinical & Life Sciences
- 1.155 Medical Ethics
- 1.155.1510 Orphan Drugs
- Web Of Science research areas
- Genetics & Heredity
- ESI research areas
- Molecular Biology & Genetics