A Web-Based registry for familial hypercholesterolaemia

K.R. Napier; J. Pang; L. Lamont; C.E. Walker; H.J.S. Dawkins; A.A. Hunter; F.M. van Bockxmeer; G.F. Watts; M.I. Bellgard

doi:10.1016/j.hlc.2016.10.019

Back

A Web-Based registry for familial hypercholesterolaemia

Journal article

Open access

Peer reviewed

A Web-Based registry for familial hypercholesterolaemia

K.R. Napier, J. Pang, L. Lamont, C.E. Walker, H.J.S. Dawkins, A.A. Hunter, F.M. van Bockxmeer, G.F. Watts and M.I. Bellgard

Heart, Lung and Circulation, Vol.26(6), pp.635-639

2016

DOI: https://doi.org/10.1016/j.hlc.2016.10.019

Files and links (2)

pdf

Napier, Hunter, Bellgard.pdfDownload View

Author’s Version Open Access

url

Link to Published Version *Subscription may be requiredView

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.

Details

Title: A Web-Based registry for familial hypercholesterolaemia
Authors/Creators: K.R. Napier (Author/Creator) - Murdoch University
J. Pang (Author/Creator) - The University of Western Australia
L. Lamont (Author/Creator) - Government of Western Australia
C.E. Walker (Author/Creator) - Government of Western Australia
H.J.S. Dawkins (Author/Creator)
A.A. Hunter (Author/Creator) - Murdoch University
F.M. van Bockxmeer (Author/Creator) - Royal Perth Hospital
G.F. Watts (Author/Creator) - Royal Perth Hospital
M.I. Bellgard (Author/Creator) - Murdoch University
Publication Details: Heart, Lung and Circulation, Vol.26(6), pp.635-639
Publisher: Elsevier B.V.
Identifiers: 991005543980307891
Copyright: © 2016 Elsevier B.V. on behalf of Australian and New Zealand Society of Cardiac and Thoracic
Murdoch Affiliation: Centre for Comparative Genomics
Language: English
Resource Type: Journal article

UN Sustainable Development Goals (SDGs)

This output has contributed to the advancement of the following goals:

Source: InCites

Metrics

250 File views/ downloads

106 Record Views

15 Times Cited - Web of Science

InCites Highlights

These are selected metrics from InCites Benchmarking & Analytics tool, related to this output

Collaboration types: Domestic collaboration
Citation topics: 1 Clinical & Life Sciences; 1.68 Lipids; 1.68.69 Lipoprotein Metabolism
Web Of Science research areas: Cardiac & Cardiovascular Systems
ESI research areas: Clinical Medicine