Congenital heart surgery databases around the world: do we need a global database?

Area of Science:

• Cardiology
• Pediatric Cardiac Surgery
• Health Informatics

Background:

• Tracking outcomes for pediatric and congenital heart disease patients is crucial.
• Existing continental databases lack seamless data sharing across boundaries.
• A unified approach is needed for comprehensive, long-term patient monitoring.

Purpose of the Study:

• To review the current state of congenital heart disease outcome analysis.
• To present principles for lifelong patient monitoring and follow-up.
• To propose a methodology for a Global Federated Multispecialty Congenital Heart Disease Database.

Main Methods:

• Linking existing continental subspecialty databases into a federated platform.
• Establishing common language, uniform core datasets, and case complexity evaluation.
• Implementing data verification, interdisciplinary collaboration, and standardized follow-up protocols.

Main Results:

• A federated database approach avoids creating a new, monolithic database.
• Enables seamless sharing of multi-institutional, longitudinal data across temporal, geographical, and subspecialty boundaries.
• Facilitates comprehensive outcome analysis beyond short-term mortality, including quality of life.

Conclusions:

• A Global Federated Multispecialty Congenital Heart Disease Database platform is essential.
• This platform will improve patient care, research, and education in pediatric cardiac disease.
• Requires multi-disciplinary involvement and standardized, lifelong follow-up protocols.