Heart of ACTION
Meeting Report: Expanding Access to Advanced Cardiac Therapies, Including Ventricular Assist Devices (VADs) and Heart Transplantation in Muscular Dystrophy
Following a 2024 expert convening, a comprehensive clinical protocol was created to support VAD and transplant candidacy in Duchenne muscular dystrophy, translating consensus into real-world implementation.
Latest Highlights
Meeting Report: Expanding Access to Advanced Cardiac Therapies, Including Ventricular Assist Devices (VADs) and Heart Transplantation in Muscular Dystrophy
Following a 2024 expert convening, a comprehensive clinical protocol was created to support VAD and transplant candidacy in Duchenne muscular dystrophy, translating consensus into real-world implementation.
Double Bridge to Heart Transplantation: Outcomes of Early vs Delayed Extra Corporeal Membrane Oxygenator Crossover in Pediatric Population
This study evaluates the progression of the distal aorta in patients with acute type A aortic dissection complicated by malperfusion syndrome who were treated with endovascular fenestration/stenting followed by delayed open aortic repair, finding that although these patients had faster distal aortic growth, their long-term survival and reoperation rates were similar to those without malperfusion syndrome.
VAD and Heart Transplantation in DMD: Guidance for Providers
Check out the newest Harmonized Protocol for Providers caring for VAD and Heart Transplantation patients with Duchenne Muscular Dystrophy.
Dystrophinopathy in ACTION: The first 500 males enrolled in the Advanced Cardiac Therapies Improving Outcomes Network prospective dystrophinopathy registry
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.
Faith, Fight, and a Second Heart: Marylu’s Story
At just 10 weeks old, Marylu survived cardiac arrest, multiple surgeries, and a rare diagnosis—emerging with a new heart and extraordinary strength. Her journey is a powerful testament to faith, courage, and miracles.
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