Action Learning Network

We're excited to kick off a new season of the ACTION VAD IRL Series with The Wait Is Not a Pause: Helping Children Thrive While Awaiting Transplant.

Join us October 15 to hear from Dr. Jennifer Conway of Stollery Children's Hospital, Dr. Casey Vogel of Ann & Robert H. Lurie Children's Hospital of Chicago, and a family as they share their experiences and perspectives on helping children and families during the transplant wait.

Register here: https://bit.ly/4yURLsZ.

When should beta-blocker therapy begin for children with heart failure? A recent ACTION study published in Pediatric Cardiology found that children who started beta-blockers during a heart failure hospitalization had similar 30-day readmission and mortality outcomes compared with those who started therapy after discharge.

These findings add to the growing body of evidence on beta-blocker initiation in pediatric heart failure and provide important data for clinicians caring for these patients. Learn more here: https://bit.ly/4izPVZE.

Infections are among the most common complications for children supported with paracorporeal ventricular assist devices (VADs), according to a recent ACTION study. Published in ASAIO Journal, this analysis found that infectious adverse events affected approximately one-third of pediatric patients on paracorporeal VAD support and were associated with worse survival. The study also identified overlapping device support and smaller patient size as independent risk factors for infection.

Learn more here: https://bit.ly/4rf6iNj!

We’re excited to share that ACTION has received a $910,000 award through the Department of Defense Duchenne Muscular Dystrophy Research Program to support a three-year study focused on understanding the evolving landscape of cardiomyopathy in Duchenne muscular dystrophy (DMD).

Led by Chet Villa, MD, in collaboration with Emily Hayes, MD, this project will leverage the ACTION-MD registry and more than 1,300 patients already enrolled across the network to address critical questions about cardiac disease in DMD.

The study will focus on:
🔹 Defining the contemporary natural history of DMD-associated cardiomyopathy
🔹 Understanding how emerging skeletal muscle therapies affect cardiac outcomes
🔹 Evaluating outcomes with advanced cardiac therapies, including ICDs, VADs, and heart transplantation

This funding will help ACTION-MD continue building the evidence needed to inform future guidelines, advance clinical trials, and ultimately improve the quality and length of life for individuals living with DMD.

Read the full announcement here: https://bit.ly/4gNoLx6!

Join us tomorrow! 📣

The Women in ACTION group invites you to Moral Support: Your Values and Moral Agency (Part 2) with Alyssa Burgart, MD, MA, on September 10 from 3:00-4:00 PM ET.

We'll continue the conversation on moral distress, moral injury, moral courage, and the values that shape our work as healthcare professionals. No need to have attended Part 1, and all ACTION members are welcome to join.

Registration link available on Basecamp!

Congratulations to our newest Member of the Month, Kerry Schindler, VAD Coordinator at NewYork-Presbyterian Morgan Stanley Children’s Hospital/Columbia! 🎉

For Kerry, ACTION is an opportunity to connect with others, share experiences and learn from the successes and challenges of teams across the network. As she shared, “It feels good to know that I can reach out to a fellow ACTION/VAD member for advice or simply bounce ideas off each other.”

Get to know Kerry, including her favorite travel destination and the advice she reminds herself to follow here: https://bit.ly/4i2DaGJ!

As cardiac care for Duchenne muscular dystrophy continues to evolve, so does our understanding of emerging therapies.

In a recent publication in Pediatric Cardiology, ACTION investigators report the first description of SGLT2 inhibitor use in patients with dystrophin-deficient cardiomyopathy using data from the ACTION registry. Among 80 patients treated across ACTION centers, SGLT2 inhibitors were generally well tolerated, with a low rate of treatment discontinuation due to adverse events. While longer-term follow-up is needed to understand their impact on heart function, these findings represent an important step toward expanding treatment options for patients with DMD.

Read the full publication here: https://bit.ly/4xq2QSo!

A recent ACTION publication in ASAIO Journal explores the use of the HeartMate 3 ventricular assist device in children, small adults, and patients with complex congenital heart disease. The review shares practical insights on patient selection, device management, anticoagulation, rehabilitation, and long-term support, while highlighting the value of multicenter collaboration in advancing care for these unique populations.

Learn more here: https://bit.ly/4d2qyff!

What happens when clinicians, researchers, patients, and families work together to improve care? The result is ACTION, a collaborative learning health system dedicated to advancing outcomes for pediatric and congenital heart failure.

A recent review published in Structural & Congenital Heart Disease highlights how ACTION is using real-world data, quality improvement, and multicenter collaboration to drive research and improve care.

Learn more here: https://bit.ly/4x2GSVg!

For some children with advanced heart failure, a ventricular assist device (VAD) can provide critical support while their heart transplant candidacy is being evaluated. A recent ACTION study published in ASAIO Journal offers new insights into this important treatment strategy and helps inform care decisions for patients, families, and clinicians.

Learn more here: https://bit.ly/3TCeScn!