Abstract Introduction The Australian and New Zealand Congenital Heart Disease (CHD) Registry aims to collect information about all people living with CHD across these two countries. This project provides a research platform that allows for large scale population studies. Purpose We present an update to the Registry’s data collection as of the end of 2024 (1). Methods Data were collected from clinical databases and electronic medical records at the 11 major paediatric and adult CHD centres across Australia and New Zealand. A minimum dataset of demographics, diagnoses and procedures were collected from each hospital. Diagnosis and procedure codes were standardised to the European Paediatric Cardiology Code (2) and were used to determine disease complexity using the ESC’s 2020 guidelines for Adult CHD (3) Results Of the 382,825 patient records collected from the hospitals, 81,349 individuals had a structural CHD diagnosis present, with 13,949 collected from adult hospitals and 67,400 collected from paediatric hospitals. There were 290,201 diagnosis records and 98,603 procedure records. Of the 76,655 who were still alive, 60,247 were from Australia, 8,634 were from New Zealand and 613 were living elsewhere. There were 23,694; 29,040; and 13,491 with mild, moderate and severe CHD respectively, with 10,430 whose severity was unable to be determined with automated processes. There were 36,895 males and 35,443 females, 11 other, and 4,163 unknown. There were 4,035 young children (0-4 years), 16,441 children (4-12 years), 11,610 teenagers (13-18 years), 33,632 young adults (19-40 years), 8,616 adults (41-60 years), and 2,143 individuals aged over 60 years. The most common diagnosis groups were Ventricular Septal Defect (23%), Atrial Septal Defect (10%), Aortic Valve Disorders (9%), Coarctation of the Aorta (8%), and Persistent Arterial Duct (7%), Tetralogy of Fallot (6%), Pulmonary Valve Disorders (6%), and Transposition of the Great Arteries (6%) Conclusions These data represent a significant milestone for the Registry’s data collection. The minimum dataset has been collected from all 11 participating hospitals, with representation from New Zealand for the first time and inclusion of procedure records from all hospitals. We believe this represents the largest dataset of CHD patients in the world and future directions will focus on enriching the minimum dataset. We will now be expanding the data collection with sources from imaging, genetic databases, patient reported outcomes, and with linkages to major national administrative health records.Patient selection flow chart Grouped CHD diagnosis categories
Nicholson et al. (Sat,) studied this question.