Perspectives on Registry-Based Research in Heart Failure: Current Status and Future Directions

Heart failure (HF) registries were established to bridge the gap between explanatory randomized clinical trials and daily clinical practice. Early hospital-based initiatives, such as ADHERE (2001) and the EuroHeart Failure Survey I (2000-2001), were followed by nationwide quality registries (e.g. SwedeHF, GWTG-HF) and global programmes (INTER-CHF, G-CHF), all together enrolling millions of patients across the acute-to-chronic HF spectrum. Registry-based analyses have provided insights into HF epidemiology, phenotypes, risk factors, prognosis, real-world therapy implementation, and have been hypotheses-generating for repurposing already existing treatments. Registries address questions that are unlikely to be answered in randomized trials, such as therapy effectiveness in underrepresented subgroups and settings that would be ethically challenging to study in a randomized setting (e.g., therapy withdrawal). Registry-based randomized controlled trials utilize the registry infrastructure for trial conduct and offer the opportunity to pragmatically test interventions at substantially lower costs than conventional randomized trials. Registries are a crucial part of a learning healthcare system, and will likely become increasingly relevant as methodological advances, including electronic record linkage, harmonized data standards, and modern causal inference techniques, enhance their validity. In this review, we provide a global overview of HF registries' evolution, scientific yield, and future potential.