ACT-VAD

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.

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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.

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The Pulse eNewsletter - February 2025

The Pulse — February 2024

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 2024 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 »

The Pulse eNewsletter July 2024

The Pulse — July 2024

Dear Community, 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, and resources. Special thanks to the Muscular Dystrophy & Heart Failure committees for new harmonization protocols, and to the Fontan Referral Improvement Project leadership & committee for launching the Provider Grand Rounds deck for Advanced Therapeutic Options for Fontan Patients!

The Pulse — July 2024 Read More »

The Pulse - January 2024

The Pulse — April 2024

Happy New Year! We hope you enjoyed the Holiday Season and are energized for a new year! We wrapped 2023 with the launch of several exciting projects, such as the HeartMate 3TM Discharge Bundle and Heart Healthy Video Series, we continued access to the Berlin Heart Active Driver under the extended trial, and we published new ACTION research. Looking ahead this year we have been meeting individually with all ACTION sites to ensure successful engagement in ACTION and highlight membership benefits for each center. We are excited to expand quality improvement, education, research, and best practice initiatives across the network, as well as engage with Global centers and increase advocacy efforts in the pediatric heart failure space. Reach out with any new ideas for the year ahead. Thank you for your continued efforts!

The Pulse — April 2024 Read More »

The Pulse - January 2024

The Pulse — January 2024

Happy New Year! We hope you enjoyed the Holiday Season and are energized for a new year! We wrapped 2023 with the launch of several exciting projects, such as the HeartMate 3TM Discharge Bundle and Heart Healthy Video Series, we continued access to the Berlin Heart Active Driver under the extended trial, and we published new ACTION research. Looking ahead this year we have been meeting individually with all ACTION sites to ensure successful engagement in ACTION and highlight membership benefits for each center. We are excited to expand quality improvement, education, research, and best practice initiatives across the network, as well as engage with Global centers and increase advocacy efforts in the pediatric heart failure space. Reach out with any new ideas for the year ahead. Thank you for your continued efforts!

The Pulse — January 2024 Read More »

Clinical Outcomes of SARS-CoV-2 Infection in Pediatric Patients on Ventricular Assist Device Support: An Action Registry Analysis

Abstract Adult patients on left ventricular assist device (LVAD) support have increased morbidity and mortality after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. There are no reported clinical data

Clinical Outcomes of SARS-CoV-2 Infection in Pediatric Patients on Ventricular Assist Device Support: An Action Registry Analysis Read More »