State- and territory-based differences that impede the establishment of a harmonised national registry.

Abstract

ObjectiveThis paper aims to identify and describe legislative and administrative barriers to hospital participation and national data linkage for the National Australian Congenital Heart Disease (CHD) Registry.MethodsA narrative review based on the National Australian CHD Registry experience of establishing participating hospital sites and national linkages associated with each jurisdiction.ResultsThere were numerous identified barriers that could be overcome with additional resources/time, and barriers that could not be overcome, reported by jurisdiction.ConclusionsThere is a pressing need for greater harmonisation of state-based legislation governing research and harmonisation of administration to reduce duplication. Substantial state-based differences hinder the establishment of a truly national registry.