TY  - EJOU
AU  - Konduri, Anusha 
AU  - Duganiero, Toni 
AU  - Smyth, Lauren 
AU  - Amdani, Shahnawaz 
AU  - Lorts, Angela 
AU  - Law, Sabrina 
AU  - Lamour, Jacqueline 
AU  - Nandi, Deipanjan 
AU  - Sheybani, Aryaz 
AU  - Wilkens, Sarah 
AU  - Young, Thomas 
AU  - Bleiweis, Mark 
AU  - Conway, Jennifer 

TI  - The Advanced Cardiac Therapies Improving Outcomes Network (ACTION): A Multicenter Registry and Learning Health System for Pediatric and Congenital Heart Disease Associated Heart Failure
T2  - Structural and Congenital Heart Disease

PY  - 2026
VL  - 21
IS  - 3
SN  - 3071-1738

AB  - Pediatric heart failure is associated with substantial morbidity, mortality, and health care utilization across diverse diagnoses and care settings. Despite major advances in surgical and medical care, evidence-based management of heart failure in the pediatric population, especially with congenital heart disease (CHD), remains limited due to a small patient population, marked anatomic and physiologic heterogeneity, and barriers to conducting traditional randomized clinical trials. Clinical registries have provided important insights into pediatric heart failure, and the increasing complexity of these populations has underscored the value of learning health system approaches to data generation and improvement. The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) was intentionally developed as a collaborative, multicenter learning health system that integrates standardized registry data with quality improvement, pragmatic research, education, and stakeholder engagement. Initially focused on mechanical circulatory support, ACTION has expanded to encompass pediatric and congenital heart failure across the lifespan, including patients with biventricular and single-ventricle physiology, Fontan circulation, neuromuscular disease–associated cardiomyopathy, and emerging populations such as cardio-oncology. This narrative review describes the history, governance, and current state of the ACTION Network, highlighting its registry infrastructure, population-specific initiatives, and demonstrated impact on clinical outcomes, practice harmonization, and device evaluation. We also discuss opportunities and challenges for future growth, including registry-embedded trials, patient-centered outcomes, and pathways for participation. ACTION illustrates how a registry-based learning health system can generate real-world evidence, improve care delivery, and advance research in complex pediatric heart failure.
KW  - Congenital heart disease; pediatric heart failure; clinical registries; learning health system; advanced cardiac therapies; quality improvement

DO  - 10.32604/schd.2026.082288