This study surveyed pediatric heart failure practitioners across ACTION centers to understand thromboprophylaxis practices in children with cardiomyopathy. The survey explored decision-making factors and medication choices using three clinical vignettes: dilated cardiomyopathy (DCM), left ventricular non-compaction (LVNC), and restrictive cardiomyopathy (RCM).
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.
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 »
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.
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.
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 »
Let’s make 2025 our best year yet! We wrapped 2024 with the exciting announcement for the FDA expanded label of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure. Achievements like this would not be possible without the continued efforts and dedication of our ACTION centers providing care to these patients, as well as entering, cleaning, and adjudicating the data. We also continued access to the Berlin Heart Active Driver under the extended trial, and we published many new ACTION manuscripts.
The Pulse — February 2024 Read More »
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.
Partnership of cardiologists with gene transfer therapy prescribers is essential to identifing patient-specific considerations that might influence risk for adverse cardiac events.
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