ACTION Publication Archives - Advanced Cardiac Therapies Improving Outcomes Network

Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

Through the collection and use of real-world data, the field has gained greater understanding of best practices in care of these patients, as well as improved access to devices with pediatric labeling of devices previously approved only for adults. Recent and current work across the network’s major focus areas (VAD, heart failure, muscular dystrophy, and Fontan) are highlighted.

Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Read More »

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis

ACTION Publication, Publications

The use of VADs in pediatric restrictive and hypertrophic cardiomyopathy is rare, but this ACTION multi-center registry analysis highlights that support is feasible, particularly in children with RCM. While the majority of patients were successfully bridged to transplant, outcomes were poorer in HCM patients, especially those requiring BiVAD support.

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis Read More »

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.

The Pulse — April 2025 Read More »

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers

ACTION Publication, Publications

This study surveyed pediatric heart failure practitioners across ACTION centers to understand thromboprophylaxis practices in children with cardiomyopathy. The survey explored decision-making factors and medication choices using three clinical vignettes: dilated cardiomyopathy (DCM), left ventricular non-compaction (LVNC), and restrictive cardiomyopathy (RCM).

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers Read More »

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.

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

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.

The ACTION VAD registry: A collective five-year experience Read More »

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.

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

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee

ACTION Publication, Publications

An expert opinion statement, addressing a critical gap in cardiac care for Duchenne muscular dystrophy – providing thorough recommendations for the initiation and titration of cardiac medications based on disease progression and patient response.

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee Read More »

The Pulse — February 2025

News, The Pulse

The Pulse — February 2025 Read More »

Outcomes for Children With Congenital Heart Disease Undergoing Ventricular Assist Device Implantation: An ACTION Registry Analysis

ACTION Publication, Publications

CHD patients are more likely in extremis at VAD implantation and experience higher rates of adverse events and worse survival compared to those with non-CHD. Timely referral for patients with CHD experiencing worsening heart failure and a proactive approach to VAD implantation has the potential to improve outcomes for this vulnerable cohort.

Outcomes for Children With Congenital Heart Disease Undergoing Ventricular Assist Device Implantation: An ACTION Registry Analysis Read More »

ACTION Publication

Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis

The Pulse — April 2025

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers

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

The ACTION VAD registry: A collective five-year experience

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

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee

The Pulse — February 2025

Outcomes for Children With Congenital Heart Disease Undergoing Ventricular Assist Device Implantation: An ACTION Registry Analysis

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