ACTION Registry

The Pulse eNewsletter November 2025

The Pulse — Nov 2025

News, The Pulse

Happy Fall to All! We have many exciting updates to share, such as new pediatric Impella education materials for Providers and Patients/Families, a debrief of our incredibly successful first VAD Bootcamp, and many new publications and other tools. As we move into the holiday season, we reflect on our continued appreciation and thankfulness for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts.

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The Pulse — Aug 2025

News, The Pulse

We hope you are enjoying your summer vacations and finding time to rest and rejuvenate with your families! ACTION has been busy with new publications, tools, resources, and projects (see links and features below). We are thrilled to announce the launch of our new VAD Adverse Event Definitions! These new and updated definitions will help us capture events more accurately and efficiently. The DCC also streamlined fields, improved forms, and added instructional text throughout to make data entry easier and faster. Thanks to all those who worked on this important project! Lastly, we are now taking proposals for ISHLT 2026, see more details below on the submission process.

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CentriMag

Contemporary Outcomes of Mechanical Circulatory Support Using Paracorporeal Continuous Flow Pump in Children: A Report From the ACTION Learning Network

ACTION Publication, Publications

This multicenter study of 367 children from the ACTION network found that 78% had a positive outcome with paracorporeal continuous flow (pCF) mechanical support. Children with congenital heart disease had lower success rates and higher mortality than those without CHD.

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The Pulse — April 2025

News, The Pulse

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.

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

ACTION Publication, Publications

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.

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The ACTION VAD registry: A collective five-year experience

ACTION Publication, Publications

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.

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The Pulse eNewsletter - February 2025

The Pulse — February 2025

News, The Pulse

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 »

Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience

Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience

ACTION Publication, Publications

This report reviews the strengths and limitations of the ACTION registry (which collects data and adjudicates adverse events on pediatric patients receiving mechanical circulatory support at 48 participating centers) to ensure optimal utility among pediatric patients receiving mechanical circulatory support. It also suggests potential areas for improvement to facilitate best care of this vulnerable population.

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