Infective Endocarditis in Adults with Congenital Heart Disease (IE-ACHD): A Registry

The proposed registry of IE cases in ACHD patients (IE-ACHD) will provide a robust and comprehensive way to study this increasingly prevalent population. Given the low incidence of IE and diversity of the ACHD population, a longitudinal multi-centre observational registry is the ideal means to better understand precipitating events, risk factors, and outcomes of IE. The Alliance for Adult Research in Congenital Cardiology (AARCC) and Canadian Adult Congenital Heart Network (CACH-Net) are well-established research networks across North America and Canada, respectively, which will provide the framework to capture the ACHD population in North America. The IE-ACHD registry will be imperative in our goals to improve understanding of this high-risk population, assess the impact of limiting antibiotic prophylaxis, identifying risk factors for adverse events, and improving patient outcomes.