A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry
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 sec...
| Main Authors: | , , , , , , |
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| Format: | Journal Article |
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Wiley Interscience
2012
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| Subjects: | |
| Online Access: | http://hdl.handle.net/20.500.11937/7886 |
| _version_ | 1848745498299596800 |
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| author | Bellgard, M. Macgregor, A. Janon, F. Harvey, A. O'Leary, Peter Hunter, A. Dawkins, Hugh |
| author_facet | Bellgard, M. Macgregor, A. Janon, F. Harvey, A. O'Leary, Peter Hunter, A. Dawkins, Hugh |
| author_sort | Bellgard, M. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | 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. |
| first_indexed | 2025-11-14T06:18:19Z |
| format | Journal Article |
| id | curtin-20.500.11937-7886 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T06:18:19Z |
| publishDate | 2012 |
| publisher | Wiley Interscience |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-78862017-09-13T16:08:45Z A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry Bellgard, M. Macgregor, A. Janon, F. Harvey, A. O'Leary, Peter Hunter, A. Dawkins, Hugh disease registries rare disease internet open source 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. 2012 Journal Article http://hdl.handle.net/20.500.11937/7886 10.1002/humu.22154 Wiley Interscience unknown |
| spellingShingle | disease registries rare disease internet open source Bellgard, M. Macgregor, A. Janon, F. Harvey, A. O'Leary, Peter Hunter, A. Dawkins, Hugh A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title | A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title_full | A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title_fullStr | A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title_full_unstemmed | A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title_short | A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry |
| title_sort | modular approach to disease registry design: successful adoption of an internet-based rare disease registry |
| topic | disease registries rare disease internet open source |
| url | http://hdl.handle.net/20.500.11937/7886 |