Ricky was diagnosed with Duchenne Muscular Dystrophy (DMD) within the first year of his life. With the unyielding support of his mother, Rosie, he has defied the odds of a complex disease. From diagnosis to treatment, and now recovery, Ricky goes everywhere, experiencing life to the fullest.
Care Across State Lines: Ricky’s Journey to Life-Saving Surgery Read More »
Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. ACTION and PHTS convened a multi-institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation.
Reducing donor acceptance practice variation – Learnings from a discussion forum Read More »
Abstract Adult patients on left ventricular assist device (LVAD) support have increased morbidity and mortality after severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. There are no reported clinical data
Happy Fall to All!
We had a successful meeting in St. Louis during the International HF/VAD Summit, and it was great to see so many of you in person! We brainstormed new ideas for QI/Research projects, clinical trials, education projects, advocacy efforts, and ways to improve data collection and project participation. We also played ACTION Trivia — did you know ACTION now has 66 sites in North America and has 27 manuscripts published since 2019? We are starting to plan for our next in-person meeting, which will be at CHOP in February 2024. Details to follow soon…
The Pulse — October 2023 Read More »
We’re excited to introduce these valuable tools and resources, designed to empower and inform those navigating the challenges of Muscular Dystrophy. Stay tuned to see how ACTION is working to
Muscular Dystrophy Resource Tools Read More »
Check out the newest One Page Summary (OPS) featuring the PediMag™ & CentriMag™. This OPS includes an overview of the device’s pump settings, cannulation strategies, system components, bedside issues and backup equipment,
PediMag™ & CentriMag™ OPS Read More »
ACTION, in conjunction with Berlin Heart, Inc., launched the first prospective FDA regulated device trial using a pediatric ventricular assist device (VAD) registry in November 2022. Enrollment in the trial has been completed as of August 11, 2023, just 10 months after launch.
Abstract Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during the COVID-19 pandemic, with the aim
We hope you are enjoying your summer vacations and finding time to soak up the longer sunnier days of the year with your families!
Looking ahead to the Fall, we are working with several committees to prepare new projects for launch. Some of these projects include a new Discharge Bundle for VAD patients and new interventions for the Fontan Referral project. We have also been working diligently to increase enrollment and data entry in our heart failure and muscular dystrophy registries. This critical data will help support the development of future projects. We appreciate everyone’s efforts throughout the busy summer to keep our important ACTION work moving along!
The Pulse — July 2023 Read More »
Abstract We sought to develop a contemporary risk assessment tool for use in pediatric ventricular assist device (VAD) candidates to estimate risk for mortality on the device using readily available
Taking ACTION: A Prognostic Tool for Pediatric Ventricular Assist Device Mortality Read More »
