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Type: Journal article
Title: Design of the Familial Hypercholesterolaemia Australasia Network Registry: creating opportunities for greater international collaboration
Author: Bellgard, M.
Walker, C.
Napier, K.
Lamont, L.
Hunter, A.
Render, L.
Radochonski, M.
Pang, J.
Pedrotti, A.
Sullivan, D.
Kostner, K.
Bishop, W.
George, P.
O brien, R.
Clifton, P.
Van Bockxmeer, F.
Nicholls, S.
Hamilton-Craig, I.
Dawkins, H.
Watts, G.
Citation: Journal of Atherosclerosis and Thrombosis, 2017; 24(10):1075-1084
Publisher: Japan Atherosclerosis Society
Issue Date: 2017
ISSN: 1340-3478
Statement of
Matthew I Bellgard, Caroline E Walker, Kathryn R Napier, Leanne Lamont, Adam A Hunter, Lee Render, Maciej Radochonski, Jing Pang, Annette Pedrotti, David R Sullivan, Karam Kostner, Warrick Bishop, Peter M George, Richard C O’Brien, Peter M Clifton, Frank M Van Bockxmeer, Stephen J Nicholls, Ian Hamilton-Craig, Hugh JS Dawkins, Gerald F Watts
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 under-treated, 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, high-quality 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, web-based 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.
Keywords: Disease registry; familial hypercholesterolaemia; interoperable; model of care, registry framework
Rights: © 2017 Japan Atherosclerosis Society
RMID: 0030077134
DOI: 10.5551/jat.37507
Grant ID:
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