Lay summary
Approximately 1 in 100 babies is born with a congenital heart defect and surgery for congenital heart disease (CHD) has been undertaken since the 1940s. New Zealand was among pioneers in this field and we estimate that we may have up to 14000 surviving adults with CHD here, many with moderate or complex disease, many in younger to mid adult years. We believe there has been considerable loss to follow up, we know that the health burden associated with moderate to complex CHD can be substantial and we know that patients who are not in specialist follow up are at greater risk of adverse health consequences. This project is to determine in detail the feasibility and methods of sustainability of a national web based CHD Registry to examine health care delivery and outcomes and investigate potential inequities in service delivery, including a pilot project in two centres