Early data from 500 males in the ACTION dystrophinopathy registry show substantial cardiac involvement and broad use of cardioprotective therapies. Ongoing follow-up will define the modern natural history of cardiomyopathy in dystrophinopathy.
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.
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).
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.
Abstract We report the largest pediatric multicenter experience with Impella pump use and peripheral veno-arterial extracorporeal membrane oxygenation (VA-ECMO) support. Utilizing the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) collaborative
Friday, April 12th 4:30–5:30 PM Practice Variation in Anticoagulation Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers Madeleine Townsend, MD, et al.
On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been living with Duchenne Muscular Dystrophy since he was 3 years old. With his family’s fierce support, he’s lived wholeheartedly despite the challenges of his condition. From intensive heart transplant surgery to obtaining a college degree, Riley follows his mother Nina’s advice: that a “life is meant to be lived.”
Defying the Odds: Riley’s Life with Duchenne Read More »
Abstract Adult patients on left ventricular assist device (LVAD) support have increased morbidity and mortality after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. There are no reported clinical data
Ventricular assist device (VAD) options vary for children in different weight groups. This study evaluates contemporary device usage and outcomes for children based on weight.
Purpose Cardiac disease results in significant morbidity and mortality in patients with muscular dystrophy (MD). Single centers have reported their ventricular assist device (VAD) experience in specific MDs and in
