Keeping track of congenital heart disease--is it time for a national registry?

Area of Science:

• Cardiology
• Public Health

Background:

• Improvements in congenital heart disease (CHD) care exist in the UK.
• Delayed presentation of adults with sequelae of childhood cardiac defects highlights challenges in patient tracing.
• The absence of a national CHD patient registry contributes to a 'lost cohort' that is difficult to follow.

Discussion:

• Regular follow-up for CHD patients is crucial due to evolving therapies and treatment strategies.
• Establishing a national CHD patient registry has been repeatedly recommended but has seen slow progress.
• Resource competition and cost are potential barriers to registry implementation.

Key Insights:

• A national registry is essential for effective long-term management of congenital heart disease.
• Integrating a registry into reorganized congenital heart services offers significant patient and provider benefits.
• The 'lost cohort' of adult CHD patients requires better identification and follow-up.

Outlook:

• Continued reorganization of congenital heart services presents an opportunity to integrate a national registry.
• Addressing resource and cost concerns is vital for the successful implementation of a CHD registry.
• A national registry will enhance the continuity of care for individuals with congenital heart disease throughout their lives.