A Web-Based Registry for Familial Hypercholesterolaemia.

Autor: Napier KR; Centre for Comparative Genomics, Murdoch University, Perth, WA, Australia., Pang J; School of Medicine and Pharmacology, University of Western Australia, Perth, WA, Australia., Lamont L; Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, WA, Australia., Walker CE; Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, WA, Australia., Dawkins HJ; Centre for Comparative Genomics, Murdoch University, Perth, WA, Australia; Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, WA, Australia; Centre for Population Health Research, Curtin University of Technology, Perth, WA, Australia; School of Pathology and Laboratory Medicine, University of Western Australia, Perth, WA, Australia., Hunter AA; Centre for Comparative Genomics, Murdoch University, Perth, WA, Australia., Bockxmeer FMV; Department of Clinical Biochemistry, PathWest Laboratory Medicine WA, Royal Perth Hospital, Perth, WA, Australia; School of Surgery, University of Western Australia, Perth, WA, Australia., Watts GF; School of Medicine and Pharmacology, University of Western Australia, Perth, WA, Australia; Lipid Disorders Clinic, Cardiometabolic Service, Royal Perth Hospital, Perth, WA, Australia., Bellgard MI; Centre for Comparative Genomics, Murdoch University, Perth, WA, Australia. Electronic address: mbellgard@ccg.murdoch.edu.au.
Jazyk: angličtina
Zdroj: Heart, lung & circulation [Heart Lung Circ] 2017 Jun; Vol. 26 (6), pp. 635-639. Date of Electronic Publication: 2016 Nov 30.
DOI: 10.1016/j.hlc.2016.10.019
Abstrakt: 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.
(Copyright © 2016. Published by Elsevier B.V.)
Databáze: MEDLINE
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