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Patients, families, doctors, nurses, researchers, and industry working to improve outcomes for children and ACHD patients with heart dysfunction

10/15/2026

🦠 How common are VAD-associated infections in children?

A new study published in Artificial Organs evaluated 1,527 pediatric patients in the ACTION registry and found that about 10% developed a VAD-associated infection. Infection rates were proportionately higher among patients with intracorporeal VADs, and median time to infection was longer for intracorporeal versus paracorporeal devices. The study found no difference in one-year survival between patients with and without VAD-associated infection.

Learn more here: https://bit.ly/4Blw3Au!

10/12/2026

Congratulations to our newest Member of the Month, Jonathan Edelson, Medical Director of the Heart Transplant and Ventricular Assist Device Programs at Children's Hospital of Philadelphia! 🎉

When asked what made him join ACTION, Jon shared, “I saw the excitement, enthusiasm, collaboration, and productivity within ACTION and wanted to be part of it. It felt like a group of people who genuinely enjoyed working together and were actually getting things done.”

Get to know Jon, including the ACTION projects he's most excited about, his favorite travel destination, and the best piece of advice he's received here: https://bit.ly/4hJbmGL!

10/07/2026

Does earlier right ventricular assist device (RVAD) implantation confer a survival advantage in children requiring biventricular assist device (BiVAD) support? A recent ACTION study published in ASAIO Journal examined outcomes among 223 pediatric patients and found better 1-year survival among patients who received an RVAD during the same surgery as their left ventricular assist device (LVAD) compared with those who underwent delayed RVAD implantation.

Learn more here: https://bit.ly/4rXZdBu.

10/05/2026

🎉 Join us in welcoming Megan to the ACTION team! 🎉

Megan is joining ACTION as a Program Manager, excited for the opportunity to contribute to meaningful work that supports patients and families. She is looking forward to being part of a passionate, welcoming team dedicated to improving outcomes together.

Outside of work, Megan enjoys seeing new movies, listening to music, spending time with her two cats, and hanging out with her fiancée, family, and friends. 🎬🎵🐱

Welcome aboard, Megan! We’re so glad to have you!

10/01/2026

We are excited to introduce the ACTION Referral Guidance for Pediatric Oncology Providers! This resource was created to provide guidance on when referral to cardiology may be appropriate for pediatric oncology patients during treatment and survivorship. The goal is to support timely recognition of cardiovascular concerns and strengthen collaboration between oncology and cardiology teams.

Special thanks to Heang Lim, MD and the ACTION Cardio-Oncology Committee for developing this valuable tool!

Download here: https://bit.ly/4e5Z8Wk!

09/23/2026

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.

09/21/2026

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.

09/16/2026

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!

09/14/2026

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!

09/09/2026

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!

Address

3333 Burnet Avenue MLC 2003
Cincinnati, OH
45229

Telephone

+15138034580

Website

http://www.actionlearningnetwork.org/

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