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dc.contributor.authorBellgard, Matthew I
dc.contributor.authorWalker, Caroline E
dc.contributor.authorNapier, Kathryn R
dc.contributor.authorLamont, Leanne
dc.contributor.authorHunter, Adam A
dc.contributor.authorRender, Lee
dc.contributor.authorRadochonski, Maciej
dc.contributor.authorPang, Jing
dc.contributor.authorPedrotti, Annette
dc.contributor.authorSullivan, David R
dc.contributor.authorKostner, Karam
dc.contributor.authorBishop, Warrick
dc.contributor.authorGeorge, Peter M
dc.contributor.authorO'Brien, Richard C
dc.contributor.authorClifton, Peter M
dc.contributor.authorVan Bockxmeer, Frank M
dc.contributor.authorNicholls, Stephen J
dc.contributor.authorHamilton-Craig, Ian
dc.contributor.authorDawkins, Hugh JS
dc.contributor.authorWatts, Gerald F
dc.description.abstractFamilial 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.en_US
dc.relation.ispartofjournalJournal of Atherosclerosis and Thrombosisen_US
dc.subject.fieldofresearchCardiorespiratory Medicine and Haematologyen_US
dc.subject.fieldofresearchMedical Physiologyen_US
dc.subject.keywordsScience & Technologyen_US
dc.subject.keywordsLife Sciences & Biomedicineen_US
dc.subject.keywordsPeripheral Vascular Diseaseen_US
dc.subject.keywordsCardiovascular System & Cardiologyen_US
dc.subject.keywordsDisease registryen_US
dc.titleDesign of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaborationen_US
dc.typeJournal articleen_US
dc.type.descriptionC1 - Articlesen_US
dcterms.bibliographicCitationBellgard, MI; Walker, CE; Napier, KR; Lamont, L; Hunter, AA; Render, L; Radochonski, M; Pang, J; Pedrotti, A; Sullivan, DR; Kostner, K; Bishop, W; George, PM; O'Brien, RC; Clifton, PM; Van Bockxmeer, FM; Nicholls, SJ; Hamilton-Craig, I; Dawkins, HJS; Watts, GF, Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration, Journal of Atherosclerosis and Thrombosis, 2017, 24 (10), pp. 1075-1084en_US
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gro.griffith.authorHamilton-Craig, Ian

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