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Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration

Citation

Bellgard, MI and Walker, CE and Napier, KR and Lamont, L and Hunter, AA and Render, L and Radochonski, M and Pang, J and Pedrotti, A and Sullivan, DR and Kostner, K and Bishop, W and George, PM and O'Brien, RC and Clifton, PM and Van Bockxmeer, FM and Nicholls, SJ and Hamilton-Craig, I and Dawkins, HJS and Watts, GF, Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration, Journal of Atherosclerosis and Thrombosis, 24, (10) pp. 1075-1084. ISSN 1340-3478 (2017) [Refereed Article]


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Copyright©2017 Japan Atherosclerosis Society This article is distributed under the terms of the latest version of CC BY-NC-SA defined by the Creative Commons Attribution License

DOI: doi:10.5551/jat.37507

Abstract

Familial Hypercholesterolemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. There are over 65,000 people estimated to have FH in Australia, but many remain undiagnosed. Patients with FH are often undertreated, but with early detection, cascade family testing and adequate treatment, patient outcomes can improve. Patient registries are key tools for providing new information on FH and enhancing care worldwide. The development and design of the FH Australasia Network Registry is a crucial component in the comprehensive model of care for FH, which aims to provide a standardized, highquality and cost-effective system of care that is likely to have the highest impact on patient outcomes. Informed by stakeholder engagement, the FH Australasia Network Registry was collaboratively developed by government, patient and clinical networks and research groups. The open-source, webbased Rare Disease Registry Framework was the architecture chosen for this registry owing to its open-source standards, modular design, interoperability, scalability and security features; all these are key components required to meet the ever changing clinical demands across regions. This paper provides a high level blueprint for other countries and jurisdictions to help inform and map out the critical features of an FH registry to meet their particular health system needs.

Item Details

Item Type:Refereed Article
Keywords:disease registry, familial hypercholesterolaemia, interoperable, model of care, registry framework
Research Division:Medical and Health Sciences
Research Group:Oncology and Carcinogenesis
Research Field:Cancer Cell Biology
Objective Division:Health
Objective Group:Clinical Health (Organs, Diseases and Abnormal Conditions)
Objective Field:Cardiovascular System and Diseases
Author:Bishop, W (Dr Warrick Bishop)
ID Code:126253
Year Published:2017
Web of Science® Times Cited:5
Deposited By:Menzies Institute for Medical Research
Deposited On:2018-05-31
Last Modified:2018-07-20
Downloads:2 View Download Statistics

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