University Library
  • Login
A gateway to Melbourne's research publications
Minerva Access is the University's Institutional Repository. It aims to collect, preserve, and showcase the intellectual output of staff and students of the University of Melbourne for a global audience.
View Item 
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne Medical School
  • Medicine and Radiology
  • Medicine and Radiology - Research Publications
  • View Item
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne Medical School
  • Medicine and Radiology
  • Medicine and Radiology - Research Publications
  • View Item
JavaScript is disabled for your browser. Some features of this site may not work without it.

    Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration

    Thumbnail
    Download
    published version (184.2Kb)

    Citations
    Scopus
    Web of Science
    Altmetric
    20
    17
    Author
    Bellgard, MI; Walker, CE; Napier, KR; Lamont, L; Hunter, AA; Render, L; Radochonski, M; Pang, J; Pedrotti, A; Sullivan, DR; ...
    Date
    2017-01-01
    Source Title
    Journal of Atherosclerosis and Thrombosis
    Publisher
    JAPAN ATHEROSCLEROSIS SOC
    University of Melbourne Author/s
    O'Brien, Richard; O'Brien, Richard
    Affiliation
    Medicine and Radiology
    Medical Education
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    Bellgard, M. I., Walker, C. E., Napier, K. R., Lamont, L., Hunter, A. A., Render, L., Radochonski, M., Pang, J., Pedrotti, A., Sullivan, D. R., Kostner, K., Bishop, W., George, P. M., O'Brien, R. C., Clifton, P. M., Van Bockxmeer, F. M., Nicholls, S. J., Hamilton-Craig, I., Dawkins, H. J. S. & Watts, G. F. (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. https://doi.org/10.5551/jat.37507.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/257155
    DOI
    10.5551/jat.37507
    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.

    Export Reference in RIS Format     

    Endnote

    • Click on "Export Reference in RIS Format" and choose "open with... Endnote".

    Refworks

    • Click on "Export Reference in RIS Format". Login to Refworks, go to References => Import References


    Collections
    • Minerva Elements Records [53039]
    • Medical Education - Research Publications [598]
    • Medicine and Radiology - Research Publications [3320]
    Minerva AccessDepositing Your Work (for University of Melbourne Staff and Students)NewsFAQs

    BrowseCommunities & CollectionsBy Issue DateAuthorsTitlesSubjectsThis CollectionBy Issue DateAuthorsTitlesSubjects
    My AccountLoginRegister
    StatisticsMost Popular ItemsStatistics by CountryMost Popular Authors