Heart of ACTION
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.
Latest Highlights
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.
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.
The Pulse — February 2024
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.
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.
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