Journal article

The Australia and New Zealand Fontan Registry: description and initial results from the first population-based Fontan registry

AJ Iyengar, DS Winlaw, JC Galati, TL Gentles, RG Weintraub, RN Justo, GR Wheaton, A Bullock, DS Celermajer, Y d'Udekem

INTERNAL MEDICINE JOURNAL | WILEY-BLACKWELL | Published : 2014

Abstract

BACKGROUND: The Fontan procedure is the final in a series of staged palliations for single-ventricle congenital heart disease, which encompasses rare and heterogeneous cardiac lesions. It represents an unusual and novel physiological state characterised by absence of a subpulmonary ventricle. AIMS: The population is growing steadily, prompting creation of this registry to study their epidemiology, demographic trends, treatment and outcomes. METHODS: This multicentre, binational, prospective and retrospective, web-based registry involving all congenital cardiac centres in the region has identified nearly all Fontan patients in Australia and New Zealand. Patients identified retrospectively wer..

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Grants

Awarded by Heart Foundation of Australia Career Development Fellowship


Awarded by Australian National Health and Medical Research Council


Awarded by Heart Foundation of Australia


Funding Acknowledgements

This work was supported by seed funding from The Australia and New Zealand Congenital Heart Research Centre, ANZ Bank Trustees, and The National Health and Medical Research Council. Subsequent funding for development of the registry was secured via a Heart Foundation of Australia Career Development Fellowship [CR 10M 5339], awarded to the Chief Investigator and Head of the Registry Y. d'Udekem. Funding into the future has been secured by grants from the Australian National Health and Medical Research Council [APP1012241], Murdoch Childrens Research Institute and an anonymous private donation. A. J. Iyengar is supported by postgraduate scholarships from the National Health and Medical Research Council and Heart Foundation of Australia [APP1038802] and Royal Australasian College of Surgeons [Foundation for Surgery Catherine Marie Enright Kelly and Eric Bishop Scholarships].