ACTION Registry

The Pulse — October 2023

Happy Fall to All!
We had a successful meeting in St. Louis during the International HF/VAD Summit, and it was great to see so many of you in person! We brainstormed new ideas for QI/Research projects, clinical trials, education projects, advocacy efforts, and ways to improve data collection and project participation. We also played ACTION Trivia — did you know ACTION now has 66 sites in North America and has 27 manuscripts published since 2019? We are starting to plan for our next in-person meeting, which will be at CHOP in February 2024. Details to follow soon…

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End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study

One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

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