Establishing and Utilising a Registry for Congenital Heart Disease

Abstract

Congenital Heart Disease (CHD) is the most common birth defect, affecting over 2,000 Australian infants annually. The National Australian CHD Registry will improve care for CHD patients, capturing data on nearly all patients diagnosed with a congenital heart defect in Australia. At the time of writing, the Registry contains data on over 80,000 Australian children and adults with CHD, representing the most comprehensive cohort collected for the Australian CHD population thus far. This is comparable with the largest contemporary CHD registries around the world. Such a resource has significant translational impact.

This thesis reports on the complex landscape of conducting such national database projects and proposes methods to improve the existing frameworks. This thesis also demonstrates the research utility of the Registry, by providing examples of both quantitative and qualitative research outputs. The Registry forms a powerful research tool, allowing for population-level analysis of trends and outcomes, as well as furthering our understanding of the true burden of CHD in Australia. This thesis thus lays the groundwork for future research using the Registry and demonstrates its potential as a foundation for ongoing national studies in CHD.