Open Access

REVIEW

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

Anusha Konduri^1,*, Toni Duganiero², Lauren Smyth², Shahnawaz Amdani³, Angela Lorts², Sabrina Law⁴, Jacqueline Lamour⁵, Deipanjan Nandi⁶, Aryaz Sheybani⁷, Sarah Wilkens⁸, Thomas Young⁹, Mark Bleiweis¹⁰, Jennifer Conway¹¹

1 Department of Pediatrics, Children’s Health, University of Texas Southwestern Medical Center, Dallas, TX, USA
2 Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
3 Division of Cardiology & Cardiovascular Medicine, Cleveland Clinic Children’s, Cleveland, OH, USA
4 Division of Cardiology, New York-Presbyterian Morgan Stanley Children’s Hospital, Columbia University Medical Center, New York, NY, USA
5 Division of Pediatric Cardiology, Mount Sinai Kravis Children’s Heart Center, New York, NY, USA
6 The Heart Center, Department of Pediatrics, Nationwide Children’s Hospital, Ohio State University, Columbus, OH, USA
7 Nemours Cardiac Center, Nemours Children’s Hospital, Wilmington, DE, USA
8 Department of Pediatrics, University of Louisville and Norton Children’s hospital, Louisville, KY, USA
9 Department of Pediatric Cardiology, Ochsner Medical Center, New Orleans, LA, USA
10 Congenital Heart Center, University of Florida, Gainesville, FL, USA
11 Department of Pediatrics, Stollery Children’s Hospital, Edmonton, AB, Canada

* Corresponding Author: Anusha Konduri. Email:

(This article belongs to the Special Issue: Registries in Congenital Heart Disease)

Structural and Congenital Heart Disease 2026, 21(3), 2 https://doi.org/10.32604/schd.2026.082288

Received 13 March 2026; Accepted 23 July 2026; Issue published 31 July 2026

Abstract

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.

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