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April 2024
Dear Community, Happy Spring to all! Thank you for joining us at ISHLT in Prague earlier this month. Our Global expansion continues and has gained momentum after speaking with many international sites. Please welcome our international colleagues as they join our committees and platforms. We are excited to share new resources and publications with our community as highlighted in this newsletter. The Fontan Referral Improvement group also launched a new intervention at the February Cardiology 2024 meeting in Scottsdale, and additional interventions will be rolling out soon. Lastly, our MARCH (Monitoring Aspirin Reduction in Children on HeartMate 3) project officially launched on March 25, 2024. Following the adult ARIES trial, our pediatric community will be looking at effects of aspirin sparing regimens for HM3 patients. Thank you for your continued efforts! Regards, 
Congratulations Aamir!
Get to know Aamir Jeewa, MD, the Section Head of the Cardiomyopathy & Heart Function Program at SickKids® (The Hospital for Sick Children) in Toronto, Ontario, CanadaFind out which ACTION initiative Aamir is most excited about as well as where you might find him working post-cardiology retirement! If you know someone that deserves a little recognition, please send us details! Chosen members will receive a special ACTION swag item! Check it out!
ACTION @ ISHLT
Thank you to everyone who helped make ACTION at ISHLT 2024 a success! We are excited to announce that we hit a record high by having 12 ACTION Abstracts at this year's conference—congratulations to all who presented! The ACTION events allowed clinical and industry members along with potential new members from around the world to connect and share ideas to enhance ACTION. A large focus of ACTION at ISHLT was to recognize best practices and barriers of integrating sites outside of the United States; the collaboration led to a greater understanding of data policies, infrastructure, and more. These learnings will stimulate the growth of ACTION Global initiatives. 
Featured ResourcesPress ReleasesIn honor of National Heart Health Month, ACTION rolled out a regional and national news media initiative at the beginning of February! The news release distributed via PRNewswire today has garnered 151 online pickups, reaching a potential audience of 88.5 million. See the latest press releases below. Email us if you’d like to get involved or learn more about it! Tools
Fontan Surveillance Resource ToolIn February we introduced this valuable roadmap resource tool to help provide recommendations on routine Fontan surveillance and when to refer for heart failure/transplant care. A referral does not necessarily mean a transfer of care, but often means a second set of eyes on the patient, with specific recommendations surrounding their management. 
An Introduction to MyocarditisCheck out our educational handout: An Introduction to Myocarditis. This information for patients, families, and caregivers includes the following topics:
Recent Publications
Impact of Heartware VAD Discontinuation On The Pediatric Population: An ACTION Registry Analysis This ACTION study was published online by JHLT Open on February 4, 2024 as part of the May 2024 issue. 
Multicenter outcomes for ventricular assist device support for failed stage II palliation This ACTION study was published by JHLT Open as part of the February 2024 issue. Data as of April 16, 2024 
147 HeartMate 3TM and Berlin Heart patients have been entered in the De-Escalation Project. 95 of the 147 patients achieved de-escalation before either 1. activation for transplant, 2. completing hospital course to discharge, or 3. receiving their transplant. Achieving de-escalation means the patient was extubated, off inotropes, ambulating or age equivalent, and stated feeds. This project is designed to encourage patient stability prior to transplant. It is also an effort to encourage discharge of patients on HeartMate 3TM. 
MARCH launched on 3/25 and it's easy to participate!As many of you are aware, the ARIES trial presented last 2023 revealed that aspirin in combination with warfarin DID NOT confer any benefit in adult patients on HeartMate 3TM. This included patients with past history of stroke, diabetes, hypertension and other risk factors. Given that bleeding is a significant and frequent adverse event in our HeartMate 3TM population, we feel that adopting an aspirin-sparing antithrombosis regimen in our pediatric population may also be advantageous, without increasing risk of thrombotic events. WHAT CLINICAL SITES NEED TO DO:
For any questions or to request more information about the ARIES trial, background for the MARCH project, and/or ACTION baseline QI data, please reach out to the MARCH project team at info@actionlearningnetwork.org. 
Registry Database UpdatesSimplified Clinical data as of April11, 2024 
Total # Patients Enrolled 1,590 
Total # Patients Enrolled 744 
Total # Patients Enrolled 124 
Total # Patients Enrolled 566 Meds Titration: 20 If you need access to enter data, or have any questions please email us. Open Positions in ACTION Centers
Arkansas Children's (University of Arkansas) |
HeartMate 3™ LVAD Patient Education Handbook – UPDATED!
November 13, 2024
