Registry Database

Safety of Inpatient and Outpatient Beta Blocker Initiation in Pediatric Heart Failure

This ACTION registry analysis of 94 children with heart failure found no difference in 30-day readmission or mortality whether beta-blockers were started during an inpatient admission or in the outpatient setting. The findings suggest both approaches are safe, though larger datasets are needed to confirm them.

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HeartMate 3 in Pediatric and Complex Populations: Physiologic Rationale, Patient Selection, and Management Strategies

This review outlines the physiologic principles, patient selection criteria, and specialized management strategies needed to safely use the adult-designed HeartMate 3 heart pump in children, small adults, and patients with congenital heart disease or muscular dystrophy.

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

ACTION is a multicenter learning health system spanning 52 sites and over 5,000 pediatric patients that combines standardized data collection, quality improvement, and research to drive measurable gains in outcomes for children with congenital heart disease-related heart failure.

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

Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

Through the collection and use of real-world data, the field has gained greater understanding of best practices in care of these patients, as well as improved access to devices with pediatric labeling of devices previously approved only for adults. Recent and current work across the network’s major focus areas (VAD, heart failure, muscular dystrophy, and Fontan) are highlighted.

Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Read More »

The Pulse — April 2025

Let’s make 2025 our best year yet! We wrapped 2024 with the exciting announcement for the FDA expanded label of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure. Achievements like this would not be possible without the continued efforts and dedication of our ACTION centers providing care to these patients, as well as entering, cleaning, and adjudicating the data. We also continued access to the Berlin Heart Active Driver under the extended trial, and we published many new ACTION manuscripts.

The Pulse — April 2025 Read More »

Capturing Physiologic Data in Children with Heart Failure Using Wearable Digital Technology: Lessons From Pilot Project

A pilot study to evaluate the feasibility of using an Apple Watch and a custom app to collect physiologic and activity data from pediatric patients with heart failure. Data such as heart rate, activity levels, and clinical status were collected to explore the potential of wearable technology for improving pediatric heart failure management. The study aims to generate hypotheses for further research on wearable technology in pediatric heart failure care.

Capturing Physiologic Data in Children with Heart Failure Using Wearable Digital Technology: Lessons From Pilot Project Read More »

The ACTION VAD registry: A collective five-year experience

A report describing patient and device characteristics, and outcomes through 1-year post-VAD implant. The 5-year ACTION VAD experience highlights the growing collaboration in the pediatric VAD community and changes in clinical practice. More work is needed to improve survival and limit adverse outcomes, especially in younger patients.

The ACTION VAD registry: A collective five-year experience Read More »

The Pulse eNewsletter - February 2025

The Pulse — February 2025

Let’s make 2025 our best year yet! We wrapped 2024 with the exciting announcement for the FDA expanded label of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure. Achievements like this would not be possible without the continued efforts and dedication of our ACTION centers providing care to these patients, as well as entering, cleaning, and adjudicating the data. We also continued access to the Berlin Heart Active Driver under the extended trial, and we published many new ACTION manuscripts.

The Pulse — February 2025 Read More »

The Pulse — November 2024

Happy Fall to All! We had a successful meeting during the Single Ventricle Investigators Meeting in Denver this month, and it was great to see so many of you in person! Many new junior faculty and leaders of all experience levels have joined ACTION, and we are excited to continue our progress in the VAD, Heart Failure, Muscular Dystrophy, and Fontan spaces. We are grateful for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts.

The Pulse — November 2024 Read More »