Investigators: Amy Baker, Jonathan Carapetis
Congenital Heart Disease (CHD) is the most common birth defect, affecting up to 50 per 1000 live births worldwide. In Western Australia (WA), the WA Register of Developmental anomalies (WARDA) collects information from Princess Margaret Hospital (PMH) regarding all birth defects including CHD. Each heart defect is specifically assigned a diagnostic code, and this allows for WARDA to keep records of all congenital heart abnormalities. Large-scale databases are a crucial first step in providing insights into the frequency, risk factors, and outcomes of these diseases. This allows for very important and significant observations to be made, and potentially new associations or risk factors for CHD may be identified.
All CHD and acquired heart disease (AHD) cases are diagnosed using echocardiography (cardiac ultrasound) through PMH and are manually assigned diagnostic codes. These codes are the key information provided to WARDA. However, to date there has been no quality assurance into ensuring the codes are correct or complete, and therefore there is no guarantee that information provided to WARDA is accurate. This poses a significant problem, as it is essential that WARDA, in conjunction with the Birth Defects Registry, are provided complete and accurate information.
The main objective of the study is to establish a comprehensive register of CHD and AHD in WA with accurate re-classification of all cases through PMH using international diagnostic codes. This will allow us to obtain accurate incidence and prevalence rates of CHD in WA to look at trends over time, assess the accuracy of current coding practices, and to look for associations between cardiac disease and genetic or demographic risk factors.
The CHD and AHD database will provide a framework for a comprehensive diagnostic and surveillance program that can be used to develop further research projects, such as surveillance research into understanding causality and disease processes, and identifying risk factors. In future, information collected in this CHD database may be incorporated into a wider Australia and New Zealand CHD Register that is in the early stages of being established.