July 2024
Dear Community, We hope you are enjoying your summer vacations and finding time to rest and rejuvenate with your families! ACTION has been busy with new publications, tools, and resources. Special thanks to the Muscular Dystrophy & Heart Failure committees for new harmonization protocols, and to the Fontan Referral Improvement Project leadership & committee for launching the Provider Grand Rounds deck for Advanced Therapeutic Options for Fontan Patients! Our Data Coordination Center (DCC) is also now taking proposals for ISHLT 2025, see more details below on the submission process. Lastly, the ACTION team is adding new staff, so please say hello to our new teammates as they join. Thank you for your continued efforts! Regards,
Meet our Newest ACTION Team Member!Rashmita graduated this past May 2024 with a Master of Public Health degree in Epidemiology & Biostatistics. She joined ACTION in July and will be working as a Research Assistant III.
Check it out!Call for ISHLT 2025 Abstracts!The ACTION Data Coordinating Center (DCC) is now accepting proposals for ISHLT 2025 abstracts. Please submit your proposal via our submission form by August 30, 2024, to be considered for approval. For any questions regarding proposals or the submission process, please email the DCC . ADVOCACY IN ACTIONWorking to Empower Female Heart Failure Cardiologists WorldwideAs part of a new initiative, Advocacy in ACTION will support underrepresented patient populations, professionals and innovative ideas. Our newest effort will focus on collaboration and research to amplify the voices and contributions made by women advancing cardiac therapies. We are dedicated to fostering inclusive and supportive environments which promote professional excellence, personal growth, and overall well-being. Together, we can drive innovation, improve outcomes, and inspire the next generation. More details about the Women in ACTION initiative coming soon... Featured ResourcesToolsHeartMate 3™ LVAD Patient Education Handbook for ADULTSWe are excited to share our HeartMate 3™ ADULT Patient Education Handbook. Created in partnership with Abbott, this innovative and comprehensive guide will support our Adult community on their LVAD journey. This handbook not only provides essential education resources but also serves as a scrapbook to document key topics and milestones.
For more HeartMate 3™ LVAD education and information visit the HeartMate 3™ LVAD device page on MyACTIONEducation.org. The site features engaging animations, infographics, videos, and articles to help patients and caregivers better understand and navigate their LVAD journey. Fontan Advanced Therapies & Outcomes Slide DeckThe ACHD/Fontan Committee's intervention tool for improving timely referral for Fontan patients to advanced therapy teams. This (brand customizable) slide deck is available to all ACTION Providers on MyACTIONEducation.org as an educational tool, and we encourage you to use it for upcoming Grand Rounds presentations specifically. Harmonized ProtocolsTwo ACTION Harmonization Protocols were released for Providers in June to MyACTIONEducation.org under the ACTION Library> 2 Resources >Protocols Dystrophinopathy Ambulatory Electrophysiologic Monitoring Harmonization Sodium-Glucose Costransporter-2 Inhibitors (SGLT2i) Recent PublicationsThis ACTION study was published by Pediatric Critical Care Medicine as part of the April 2024 issue. This ACTION study was published by ASAIO as part of the February 2024 issue. This ACTION study was published in ASAIO Journal on February 5, 2024. Reminder...Given that bleeding is a significant and frequent adverse event in the ACTION 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:
Questions? Email the MARCH project team at info@actionlearningnetwork.org. Registry Database UpdatesSimplified Clinical data as of July 17, 2024 Total # Patients Enrolled 1,675 Total # Patients Enrolled 812 Total # Patients Enrolled 139 Total # Patients Enrolled 606 Meds Titration: 20 If you need access to enter data, or have any questions please email us. Open Positions in ACTION CentersThe Congenital Heart Center at Levine Children’s Hospital
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NEWS
HeartMate 3™ LVAD Patient Education Handbook – UPDATED!
November 13, 2024
The Pulse — November 2024
November 8, 2024
NEW! Heart Failure Success Patient & Family Education Handbook
September 9, 2024
The Pulse — April 2024
April 30, 2024
An Introduction to Myocarditis
March 20, 2024
Fontan Surveillance Resource Tool
February 9, 2024