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Updated: Jun 2, 2026
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Development of a Virtual Reality Assessment of Everyday Living Skills
Published on: April 24, 2014
The ACTION VAD registry: A collective five-year experience.
Jonathan B Edelson1, Alexander Raskin2, Mohammed Absi3
1Division of Cardiology, Cardiac Center, the Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
Summary
The ACTION VAD registry shows improved pediatric ventricular assist device (VAD) use, especially for congenital heart disease (CHD). Further research is needed to enhance survival and reduce adverse events in young VAD patients.
Area of Science:
- Pediatric Cardiology
- Mechanical Circulatory Support
- Congenital Heart Disease
Background:
- The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is a collaborative learning health system established in 2018.
- ACTION focuses on improving outcomes for pediatric heart failure patients, including those with congenital heart disease (CHD) supported by ventricular assist devices (VADs).
Purpose of the Study:
- To describe patient and device characteristics within the ACTION VAD registry.
- To report 1-year post-implant outcomes for pediatric VAD recipients.
Main Methods:
- Data were collected from the ACTION VAD registry, encompassing April 2018 to June 2023.
- The registry includes 1,430 VAD implants in 1,220 pediatric patients (≤18 years) across 57 North American sites.
Main Results:
- Males represented 55% of patients; the median age was 3.7 years, with 36% weighing under 10 kg.
- Congenital heart disease (CHD) was the primary diagnosis for nearly 40% of patients, with CHD VAD implants increasing from 26% in 2018 to 42% in 2023.
- Overall 1-year survival on support was 79.2%, with a 13.7% stroke incidence. Infants had poorer outcomes (72.9% survival, 20.8% stroke).
Conclusions:
- The 5-year ACTION VAD experience demonstrates growing collaboration and evolving clinical practices in pediatric VAD care.
- There is a critical need for further advancements to improve survival rates and mitigate adverse outcomes, particularly in younger pediatric populations.
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