ACTION Publication

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 »

Current state of neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices: an Advanced Cardiac Therapies Improving Outcomes Network and Cardiac Neurodevelopmental Outcome Collaborative collaborative survey

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.

Current state of neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices: an Advanced Cardiac Therapies Improving Outcomes Network and Cardiac Neurodevelopmental Outcome Collaborative collaborative survey Read More »

Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience

Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience

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 »

Suboptimal Titration of Heart Failure Medications in Pediatric Patients: Baseline Data from ACTION

This multi-center retrospective pilot study evaluated the current state of HF medication therapy in children and found that, despite a robust evidence base in adults and recommendations for children, use of ACEi/ARB/ARNi, BB, and MRA is not universal in children with EF <40%; indeed, less than half of children received medications from all three classes by 6 months of follow-up...

Suboptimal Titration of Heart Failure Medications in Pediatric Patients: Baseline Data from ACTION Read More »

VADs Device Score

Development and Validation of a Novel Pediatric Mechanical Circulatory Support Risk Stratification Tool: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Ventricular Assist Device Score

The ACTION VADs score for mortality can be calculated easily and offers risk stratification and prognostic information for pediatric VAD candidates. This is the first validated risk assessment tool for pediatric mechanical circulatory support.

Development and Validation of a Novel Pediatric Mechanical Circulatory Support Risk Stratification Tool: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Ventricular Assist Device Score 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 »

Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation

ACTION and the Academic Research Consortium (ARC) aimed to harmonize definitions of pediatric and CHD AEs for use in clinical trials, registries, and regulatory evaluation.

Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation 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 »

Mechanical Ventilation and Outcomes of Children Who Undergo Ventricular Assist Device Placement: 2014–2020 Linked Analysis From the Advanced Cardiac Therapies Improving Outcomes Network and Pediatric Cardiac Critical Care Consortium Registries

Placement of a ventricular assist device (VAD) improves outcomes in children with advanced heart failure, but adverse events remain important consequences. Preoperative mechanical ventilation (MV) increases mortality, but it is unknown what impact prolonged postoperative MV has.

Mechanical Ventilation and Outcomes of Children Who Undergo Ventricular Assist Device Placement: 2014–2020 Linked Analysis From the Advanced Cardiac Therapies Improving Outcomes Network and Pediatric Cardiac Critical Care Consortium Registries Read More »