HOA Feature

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 »

Owen’s Story: A Journey of Resilience and Hope

Patient Stories, Stories

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

ACTION Publication, Publications

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

ACTION Publication, Publications

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

ACTION Publication, Publications

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 »

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

News, Press Release

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 »

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