outcomes research

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis

ACTION Publication, Publications

The use of VADs in pediatric restrictive and hypertrophic cardiomyopathy is rare, but this ACTION multi-center registry analysis highlights that support is feasible, particularly in children with RCM. While the majority of patients were successfully bridged to transplant, outcomes were poorer in HCM patients, especially those requiring BiVAD support.

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis Read More »

Capturing Physiologic Data in Children with Heart Failure Using Wearable Digital Technology: Lessons From Pilot Project

ACTION Publication, Publications

A pilot study to evaluate the feasibility of using an Apple Watch and a custom app to collect physiologic and activity data from pediatric patients with heart failure. Data such as heart rate, activity levels, and clinical status were collected to explore the potential of wearable technology for improving pediatric heart failure management. The study aims to generate hypotheses for further research on wearable technology in pediatric heart failure care.

Capturing Physiologic Data in Children with Heart Failure Using Wearable Digital Technology: Lessons From Pilot Project Read More »

The ACTION VAD registry: A collective five-year experience

ACTION Publication, Publications

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 »

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

ACTION Publication, Publications

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

ACTION Publication, Publications

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 »

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience

ACTION Publication, Publications

Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality but are underutilised in paediatric cardiac care. This ACTION study, Patient and parent-reported outcomes in paediatric ventricular assist

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience Read More »