A Web-Based Registry for Familial Hypercholesterolaemia

Kathryn R Napier, Jing Pang, Leanne Lamont, Caroline E Walker, Hugh Js Dawkins, Adam A Hunter, Frank Van Bockxmeer, Gerald F Watts, Matthew I Bellgard

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    13 Citations (Scopus)

    Abstract

    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. © 2016 Published by Elsevier B.V. on behalf of Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) and the Cardiac Society of Australia and New Zealand (CSANZ).

    Original languageEnglish
    Pages (from-to)635-639
    Number of pages5
    JournalHeart, Lung and Circulation
    Volume26
    Issue number6
    DOIs
    Publication statusPublished - Jun 2017

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    Napier, K. R., Pang, J., Lamont, L., Walker, C. E., Dawkins, H. J., Hunter, A. A., Van Bockxmeer, F., Watts, G. F., & Bellgard, M. I. (2017). A Web-Based Registry for Familial Hypercholesterolaemia. Heart, Lung and Circulation, 26(6), 635-639. https://doi.org/10.1016/j.hlc.2016.10.019