K.S.

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

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

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 »

Owen’s Story: A Journey of Resilience and Hope

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.

Owen’s Story: A Journey of Resilience and Hope Read More »

The Pulse eNewsletter - February 2025

The Pulse — February 2025

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 2025 Read More »

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

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 »

Taking ACTION to detect myocarditis related to recombinant gene transfer therapy for Duchenne Muscular Dystrophy; Consensus recommendations for cardiac surveillance

Partnership of cardiologists with gene transfer therapy prescribers is essential to identifing patient-specific considerations that might influence risk for adverse cardiac events.

Taking ACTION to detect myocarditis related to recombinant gene transfer therapy for Duchenne Muscular Dystrophy; Consensus recommendations for cardiac surveillance Read More »

Over 100 Fontan Patients on Systemic Ventricular Assist Device Support: An ACTION Update

As the Fontan population grows, understanding successful strategies for ventricular assist device (VAD) support of the failing Fontan circulation is needed. A retrospective analysis was performed of patients with Fontan circulation and systemic VAD support in the ACTION registry.

Over 100 Fontan Patients on Systemic Ventricular Assist Device Support: An ACTION Update Read More »

Ventricular assist device implantation in children with a mechanical valve: An ACTION registry analysis

Patients with congenital heart disease (CHD) frequently have had valve interventions, including replacement with a mechanical valve. The impact of a mechanical valve on clinical outcomes in patients undergoing ventricular assist device (VAD) implantation is not well characterized.

Ventricular assist device implantation in children with a mechanical valve: An ACTION registry analysis Read More »