Department of Defense Funds ACTION to Advance Duchenne Muscular Dystrophy Cardiac Research
ACTION receives $910,000 Department of Defense award to study the evolving impact of therapies on heart disease in Duchenne muscular dystrophy
ACT-MD
HeartMate 3 in Pediatric and Complex Populations: Physiologic Rationale, Patient Selection, and Management Strategies
This review outlines the physiologic principles, patient selection criteria, and specialized management strategies needed to safely use the adult-designed HeartMate 3 heart pump in children, small adults, and patients with congenital heart disease or muscular dystrophy.
Use of SGLT2 Inhibitors in Dystrophin Deficient Cardiomyopathy: A Multi-center Study Using the ACTION Registry
A new multicenter study suggests SGLT2 inhibitors — a diabetes drug class — may offer a well-tolerated way to modestly improve heart function in kids with dystrophin-deficient cardiomyopathy.
The Pulse — June 2026
We hope to see you soon! This special edition of The Pulse is focused on upcoming in-person meetings for the Spring and Summer! We hope to see you at any or all of these exciting events.
The Pulse — June 2026 Read More »
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.
The Pulse — Nov 2025
Happy Fall to All! We have many exciting updates to share, such as new pediatric Impella education materials for Providers and Patients/Families, a debrief of our incredibly successful first VAD Bootcamp, and many new publications and other tools. As we move into the holiday season, we reflect on our continued appreciation and thankfulness for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts.
The Pulse — Nov 2025 Read More »
The Pulse — Aug 2025
We hope you are enjoying your summer vacations and finding time to rest and rejuvenate with your families! ACTION has been busy with new publications, tools, resources, and projects (see links and features below). We are thrilled to announce the launch of our new VAD Adverse Event Definitions! These new and updated definitions will help us capture events more accurately and efficiently. The DCC also streamlined fields, improved forms, and added instructional text throughout to make data entry easier and faster. Thanks to all those who worked on this important project! Lastly, we are now taking proposals for ISHLT 2026, see more details below on the submission process.
The Pulse — Aug 2025 Read More »
Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy
In a prospective study of 265 males with Duchenne Muscular Dystrophy, nearly 30% of those with moderate or severe heart dysfunction were not receiving full consensus-directed cardiac therapy, and most did not reach target medication doses—highlighting the need to optimize treatment strategies as cardiac disease becomes a leading cause of death in DMD.
Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy Read More »
Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
Through the collection and use of real-world data, the field has gained greater understanding of best practices in care of these patients, as well as improved access to devices with pediatric labeling of devices previously approved only for adults. Recent and current work across the network’s major focus areas (VAD, heart failure, muscular dystrophy, and Fontan) are highlighted.
30th Annual Congress of World Muscle Society – ACTION Oral Presentation
ACTION Oral Presentation Transplant Dystrophinopathy Transplantation in Males with Dystrophinopathy: An Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Dystrophinopathy Registry Analysis Emily Hayes, MD et. al. Download abstract…
30th Annual Congress of World Muscle Society – ACTION Oral Presentation Read More »
