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

    Access Status
    Open access via publisher
    Authors
    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, Hugh
    Watts, G.
    Date
    2017
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Bellgard, M. and Walker, C. and Napier, K. and Lamont, L. and Hunter, A. and Render, L. and Radochonski, M. et al. 2017. Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration. Journal of Atherosclerosis and Thrombosis. 24 (10): pp. 1075-1084.
    Source Title
    Journal of Atherosclerosis and Thrombosis
    DOI
    10.5551/jat.37507
    ISSN
    1340-3478
    School
    Centre for Population Health Research
    URI
    http://hdl.handle.net/20.500.11937/58321
    Collection
    • Curtin Research Publications
    Abstract

    © 2017 Japan Atherosclerosis Society. 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.

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