A Web-Based Registry for Familial Hypercholesterolaemia

Napier KR, Pang J, Lamont L, Walker CE, Dawkins HJ, Hunter AA, Bockxmeer FM, Watts GF, Bellgard MI.


Heart Lung and Circulation, November 2016
DOI: 10.1016/j.hlc.2016.10.019

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.

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