Please use this identifier to cite or link to this item:
Title: Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration.
Austin Authors: Bellgard, Matthew I;Walker, Caroline E;Napier, Kathryn R;Lamont, Leanne;Hunter, Adam A;Render, Lee;Radochonski, Maciej;Pang, Jing;Pedrotti, Annette;Sullivan, David R;Kostner, Karam;Bishop, Warrick;George, Peter M;O'Brien, Richard C ;Clifton, Peter M;Bockxmeer, Frank M Van;Nicholls, Stephen J;Hamilton-Craig, Ian;Dawkins, Hugh Js;Watts, Gerald F
Affiliation: Centre for Comparative Genomics, Murdoch University, Murdoch
Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia
School of Medicine, Faculty of Health and Medical Sciences, University of Western Australia
Familial Hypercholesterolaemia Family Support Group of Western Australia
Sydney Medical School, University of Sydney
School of Medicine, University of Queensland
Menzies Institute for Medical Research, University of Tasmania
Canterbury Health Laboratories, University of Otago
Austin Clinical School, The University of Melbourne, Heidelberg, Victoria, Australia
School of Pharmacy and Medical Sciences, University of South Australia
Department of Clinical Biochemistry, PathWest Laboratory Medicine WA, Royal Perth Hospital
School of Surgery, University of Western Australia
South Australian Health and Medical Research Institute, University of Adelaide
School of Medicine, Flinders University
Centre for Population Health Research, Curtin University of Technology
School of Pathology and Laboratory Medicine, University of Western Australia
Lipid Disorders Clinic, Cardiometabolic Service, Royal Perth Hospital
Issue Date: 1-Oct-2017 2017-03-24
Publication information: Journal of atherosclerosis and thrombosis 2017; 24(10): 1075-1084
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.
DOI: 10.5551/jat.37507
PubMed URL: 28344196
Type: Journal Article
Subjects: Disease registry
Familial hypercholesterolaemia
Model of care
Registry framework
Appears in Collections:Journal articles

Show full item record

Page view(s)

checked on Nov 30, 2022

Google ScholarTM


Items in AHRO are protected by copyright, with all rights reserved, unless otherwise indicated.