pediatric heart failure

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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Multi-institutional outcomes of Impella use in pediatric patients: A brief communication from the ACTION Network

ACTION Publication, Publications

In this multicenter retrospective study of 150 pediatric patients supported with the Impella device, 89.3% achieved positive clinical outcomes despite a 28% adverse event rate. Findings suggest a potential role for Impella in managing refractory advanced heart failure in children, particularly those with cardiomyopathy, transplant graft dysfunction, or congenital heart disease.

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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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Bridging gaps in pediatric device development: The power of ACTION – a collaborative learning network

ACTION Publication, Publications

Innovation in pediatric medical devices is limited by financial and regulatory barriers due to the small and heterogenous target population. Intentional design of the ACTION registry has mitigated regulatory and financial barriers to pediatric VAD innovation through the use of real-world evidence gathered through a learning network.

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Owen’s Story: A Journey of Resilience and Hope

Patient Stories, Stories

Born with a complex congenital heart defect, Owen has faced more medical challenges in his 20 years than most do in a lifetime, however his resilience and optimism have carried him through. Today, he’s thriving as a college student with dreams of becoming a physician’s assistant and raising awareness about organ donation. His journey—from patient to future healthcare provider—is a testament to the power of perseverance, community support, and lifesaving health care.

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