HOA Feature

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 »

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 »

ACTION and Johnson & Johnson Med Tech Press Release

ACTION Centers Collaborate with Johnson & Johnson MedTech to Secure FDA Labeling for Impella Support System in Pediatric Patients

In a groundbreaking achievement for pediatric heart care, the FDA has expanded the labeling of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure, extending the original approval for care of adults with heart failure.

ACTION Centers Collaborate with Johnson & Johnson MedTech to Secure FDA Labeling for Impella Support System in Pediatric Patients 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 »