Journal article
Design of the familial hypercholesterolaemia australasia network registry: Creating opportunities for greater international collaboration
MI Bellgard, CE Walker, KR Napier, L Lamont, AA Hunter, L Render, M Radochonski, J Pang, A Pedrotti, DR Sullivan, K Kostner, W Bishop, PM George, RC O’brien, PM Clifton, FM Van Bockxmeer, SJ Nicholls, I Hamilton-Craig, HJS Dawkins, GF Watts
Journal of Atherosclerosis and Thrombosis | JAPAN ATHEROSCLEROSIS SOC | Published : 2017
DOI: 10.5551/jat.37507
Open access
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 syst..
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Awarded by European Commission
Funding Acknowledgements
[ "The FH Australasia Network Registry was established with the support from the development grants from the Office and Population Health Genomics, Government of Western Australia, and the FH Australasia Network of the Australian Atherosclerosis Society. The authors gratefully acknowledge the combined support-in-part funding for this work. This includes the RD-Connect-European Union Seventh Framework Programme (FP7/2007-2013 program HEALTH.2012.2.1.1-1-C) under grant agreement number 305444: RD Connect: An integrated platform connecting databases, registries, biobanks, and clinical bioinformatics for rare disease research, the financial support of Australian National Health and Medical Research Council (APP1055319) under the NHMRC-European Union Collaborative Research Grants scheme, and the Wellcome Trust [REF 104746]. The authors wish to acknowledge the FH Australasia Network and the Australian Atherosclerosis Society for their partnership in the FH Australasia Network Registry. The Australian Atherosclerosis Society and the FH Australasia Network are supported by Sanofi, Amgen, and MSD Australia.", "The Office of Population Health Genomics, in collaboration with the Department of Internal Medicine at Royal Perth Hospital and the UWA School of Medicine and Pharmacology and Primary Care, were supported by the Australian Better Health Initiative: A joint Australian, State and Territory government initiative to run the Familial Hypercholesterolaemia Cascade Screening Project and the development of the Familial Hypercholesterolaemia Model of Care. The key outcome of this Flagship project was a national framework for the early detection and treatment of familial hypercholesterolemia in affected Australian families. The authors wish to thank Professors Peter O'Leary and John Burnett for their dedication and commitment to leading the pilot programs and developing the model of care framework and the context for the clinical enabling registry described in this paper." ]