Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration
Matthew I Bellgard, Caroline E Walker, Kathryn R Napier, Leanne Lamont, Adam A Hunter, Lee Render, Maciej Radochonski, Jing Pang, Annette Pedrotti, David R Sullivan, Karam Kostner, Warrick Bishop, Peter M George, Richard C O'Brien, Peter M Clifton, Frank M Van Bockxmeer, Stephen J Nicholls, Ian Hamilton-Craig, Hugh JS Dawkins, Gerald F Watts
Journal of Atherosclerosis and Thrombosis | JAPAN ATHEROSCLEROSIS SOC | Published : 2017
Awarded by RD-Connect-European Union Seventh Framework Programme (FP7) program
Awarded by Australian National Health and Medical Research Council under the NHMRC-European Union Collaborative Research Grants scheme
Awarded by Wellcome Trust
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.