A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry
MetadataShow full item record
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.
Showing items related by title, author, creator and subject.
Al Shoaili, Saoud Humaid Salim (2005)The study in this report mainly focuses on the Internet-based Monitoring and Controlling of a Real-Time Dynamic System interfaced via a dedicated local computer. The main philosophy behind this study is to allow the remote ...
Kent, Peter; Kongsted, A.; Jensen, T.; Albert, H.; Schiøttz-Christensen, B.; Manniche, C. (2015)Background: Large-scale clinical registries are increasingly recognized as important resources for quality assurance and research to inform clinical decision-making and health policy. We established a clinical registry ...
Overcoming Perfectionism: Protocol of a Randomized Controlled Trial of an Internet-Based Guided Self-Help Cognitive Behavioral Therapy InterventionKothari, R.; Egan, Sarah; Wade, T.; Andersson, G.; Shafran, R. (2016)Background: Perfectionism is elevated across, and increases risk for, a range of psychological disorders as well as having a direct negative effect on day-to-day function. A growing body of evidence shows that cognitive ...