ACSQHC-ARCR-189

A normal heart comprises two pumping chambers called ventricles. Being born with a single ventricle is one of the most severe conditions in newborns with projected mortality of 25-40% within the first 4 years of life. A series of operations provide a lifeline to these patients. The last of these is the Fontan procedure; a procedure performed at around 4 years of age, that connects the veins directly to the pulmonary arteries.

It was long believed that these surgeries would not result in long-lasting survival, however, under the leadership of the Australian and New Zealand Fontan Registry (ANZ Fontan Registry), it has now been demonstrated that survival 35 years after Fontan will reach 85%. The ANZ Fontan Registry is the largest database of patients surviving with a single ventricle and the only population-based registry of Fontan patients’ data. It aims to facilitate a greater understanding of these patients’ short and long term health outcomes, as well as factors which can be modified to improve their health and wellbeing. Being the largest registry of its kind, and with strong partnerships between multiple sites throughout Australia and New Zealand, the ANZ Fontan Registry enables high-quality research (including clinical trials) to be conducted in order to optimise and  standardise care for this population.