Keeping track of congenital heart disease — Is it time for a national registry?

Abstract Considerable improvements have been made in care and provision for patients with congenital heart disease in the United Kingdom. However, delayed presentation of adult patients with sequelae of known childhood cardiac defects reflects the current situation that there is no national registry of patients with congenital heart disease, and this “lost cohort” of patients is difficult to trace. Maintaining regular follow-up for selected patients with congenital heart disease can be challenging for a variety of reasons, but remains particularly important as emerging therapies and treatment strategies continue to alter management. Despite recent calls from a variety of organisations to establish a national registry of patients with congenital heart disease, progress has been slow. Faced with competition for resources, the costs of such a venture may be cited as a likely hurdle, but the potential advantages for patients and healthcare providers alike justify calls to integrate a registry as part of the ongoing reorganisation of congenital heart services in the United Kingdom.