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 »
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.
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.
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 »
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.
Partnership of cardiologists with gene transfer therapy prescribers is essential to identifing patient-specific considerations that might influence risk for adverse cardiac events.
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 »
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.
Pediatric patients with ventricular assist devices often have access to neurodevelopmental providers in the inpatient setting, though supports vary by centre. Strengthening family neurodevelopmental education, referral processes, and family-centered psychosocial services may improve current neurodevelopmental/psychosocial care for pediatric ventricular assist device patients.
This report reviews the strengths and limitations of the ACTION registry (which collects data and adjudicates adverse events on pediatric patients receiving mechanical circulatory support at 48 participating centers) to ensure optimal utility among pediatric patients receiving mechanical circulatory support. It also suggests potential areas for improvement to facilitate best care of this vulnerable population.
Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience Read More »
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