Action Learning Network

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Action Learning Network

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

06/01/2026

We’re gearing up for and excited to highlight ACTION work being presented at the meeting!

First up - Dr. Kriti Puri of Texas Children'swith a poster on the STOP-CS Severity Classification, a new pediatric cardiogenic shock staging system to better define severity and track clinical trajectory.

Catch it on display Thursday and Friday at the conference! Learn more here: https://bit.ly/4veT586!

05/28/2026

Making waves in Fort Lauderdale 🌊

Join us in congratulating the 3 ACTION members presenting at next month! We’ll share more about each presentation as we get closer.

ASAIO Journal

05/21/2026

🌴Less than one month to ASAIO 2026! 🌴

Make plans to join us June 17-20, 2026 in Fort Lauderdale - there’s still time to register.

Don’t miss key pediatric sessions:
• Pediatric Medical Device Day (June 17)
• Adult ACTION Connection (June 18)

Learn more here: https://asaio.org/conference/.

05/20/2026

What if life on a ventricular assist device (VAD) could mean more mobility for kids?

A new ACTION study, published in JACC, evaluated the Berlin Heart EXCOR Active Driving System - a novel approach designed to improve portability and better adapt to a child’s changing physiology.

The study, which included 158 pediatric patients across 14 centers, showed excellent short-term outcomes, including a 98.1% survival rate at 90 days.

These results highlight the reliability of this next-generation system and point toward a future where children on VAD support may experience greater mobility and improved quality of life.

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

05/18/2026

This month, we recognize the many mothers impacted by Duchenne muscular dystrophy (DMD) including carriers, who are an essential but often under-recognized part of the DMD community.

While Duchenne primarily affects boys, many carriers are at risk for cardiac involvement, including cardiomyopathy.

At ACTION, we are committed to advancing cardiac care across the full spectrum of Duchenne by supporting:
🔹 Early screening for carriers
🔹 Ongoing cardiac surveillance
🔹 Access to specialized care

Because caring for Duchenne means caring for families, too. Learn more here: https://bit.ly/4tFdQIM.

05/13/2026

🧠 In honor of American Stroke Month this May, we’re proud to highlight the power of collaboration in advancing VAD patient care. Together, we’ve moved toward an aspirin-sparing approach for HeartMate 3 patients, and the results are encouraging! Over two years, we’ve seen a reduction in bleeding events with no increase in stroke risk.

Progress like this is only possible through dedicated teamwork. We’re incredibly grateful for our community of providers, researchers, patients, and families who continue to work together to make a difference. Stay tuned - publication is coming soon!

05/11/2026

Check out the latest ACTION OPS Guidelines! 🫀

These VAD Recovery Guides feature information on Weaning & Explant Phases, Echocardiograms, and the Catheterization Labs. They also include a VAD RAMP Hemodynamics (fill in) chart for both CF VADs & Berlin Heart.

Download these new bedside tools from MyACTIONEducation.org!

05/06/2026

Pride, gratitude & admiration - that’s how ACTION feels about the nurses across our network this and every day. 💙

Quite honestly, we’d be lost without you. Thank you for all that you do - we’re so grateful for you.

04/29/2026

A recent ACTION study, published in ASAIO Journal, examined early anticoagulation strategies in children and young adults supported with the HeartMate 3 ventricular assist device.

Using data from the ACTION VAD registry, investigators analyzed outcomes from 234 patients across the network who received either bivalirudin or unfractionated heparin after implantation. The study found similar rates of early stroke, bleeding, and 1‑year survival between groups, with excellent outcomes overall.

These findings show there is more than one safe approach to early anticoagulation after HeartMate 3 implantation - and underscore the importance of multicenter, real‑world data to guide care for pediatric patients with advanced heart failure.

Learn more here: https://bit.ly/3PvcXV6!

04/27/2026

🎉 Five years ago, ACTION launched the MD Registry with a simple goal: to better understand cardiac disease in Duchenne muscular dystrophy (DMD).

Today, more than 1,500 patients are part of that effort.

Through this collaborative effort, we’ve gained important insights into how cardiac disease develops and progresses in DMD, reinforcing the importance of early recognition and longitudinal care.

At ACTION, the MD registry supports:
• Earlier identification of cardiac involvement
• Data-driven care strategies
• Collaboration across centers to reduce variability

Because better data leads to better care AND better outcomes.

Learn more here: https://bit.ly/4e7TBQ9.

Address

3333 Burnet Avenue MLC 2003
Cincinnati, OH
45229

Telephone

+15138034580

Website

http://www.actionlearningnetwork.org/

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