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A Web-Based registry for familial hypercholesterolaemia

Napier, K.R., Pang, J., Lamont, L., Walker, C.E., Dawkins, H.J.S., Hunter, A.A., van Bockxmeer, F.M., Watts, G.F. and Bellgard, M.I. (2016) A Web-Based registry for familial hypercholesterolaemia. Heart, Lung and Circulation, 26 (6). pp. 635-639.

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Familial hypercholesterolaemia (FH) is the most common and serious monogenic disorder of lipoprotein metabolism that leads to premature coronary heart disease. Patients with FH are often under-treated, and many remain undiagnosed. The deployment of the FH Australasia Network Registry is a crucial component of the comprehensive model of care for FH, which aims to provide a standardised, high-quality and cost-effective system of care that is likely to have the highest impact on patient outcomes. The FH Australasia Network Registry was customised using a registry framework that is an open source, interoperable system that enables the efficient customisation and deployment of national and international web-based disease registries that can be modified dynamically as registry requirements evolve. The FH Australasia Network Registry can be employed to improve health services for FH patients across the Australasia-Pacific region, through the collation of data to facilitate clinical service planning, clinical trials, clinical audits, and to inform clinical best practice.

Item Type: Journal Article
Murdoch Affiliation: Centre for Comparative Genomics
Publisher: Elsevier B.V.
Copyright: © 2016 Elsevier B.V. on behalf of Australian and New Zealand Society of Cardiac and Thoracic
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