ACTION Publication

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 »

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 »

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 »