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

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., Van Bockxmeer, Frank M., Nicholls, Stephen J., Hamilton-Craig, Ian, Dawkins, Hugh J. S. and Watts, Gerald F. (2017) Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration. Journal of Atherosclerosis and Thrombosis, 24 10: 1075-1084. doi:10.5551/jat.37507


Author 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.
Van Bockxmeer, Frank M.
Nicholls, Stephen J.
Hamilton-Craig, Ian
Dawkins, Hugh J. S.
Watts, Gerald F.
Title Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration
Journal name Journal of Atherosclerosis and Thrombosis   Check publisher's open access policy
ISSN 1880-3873
1340-3478
Publication date 2017-01-01
Sub-type Article (original research)
DOI 10.5551/jat.37507
Open Access Status Not yet assessed
Volume 24
Issue 10
Start page 1075
End page 1084
Total pages 10
Publisher Japan Atherosclerosis Society
Language eng
Subject 2724 Internal Medicine
2705 Cardiology and Cardiovascular Medicine
2704 Biochemistry, medical
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 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.
Keyword Disease registry
Familial hypercholesterolaemia
Interoperable
Model of care
Registry framework
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collection: Scopus Import
 
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Created: Fri, 03 Nov 2017, 11:19:30 EST