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March 2022
Dear Community, We are looking forward to seeing many of you at ISHLT in April! If you haven't already, please RSVP for the ACTION meeting on Tuesday, 4/26 from 3–6pm ET. The meeting is open to all ACTION members attending ISHLT. In other exciting news, we are getting ready to launch the Berlin Heart Active Driver study! Communications have been sent out to 17 ACTION sites participating in this device trial, and study packets will follow soon. Collaboration and moving the field forward together is one of ACTION's main principles, and this important trial will be the first of its kind for our network. Regards, 
Upcoming Events
April 7–9, 2022 
April 15, 2022 
April 26, 2022 | 3 – 6 PM ET 
April 27–30, 2022 Check it out!
ACTION @ ISHLT: Look Who’s Talking
Thursday, April 28th9:45–10 AM Sebastian Tume “Characteristics and outcomes of patients supported with Impella percutaneous VAD device at pediatric institutions: Action collaborative Experience, Sebastian Tume, et al.” 5:27–5:33 PM Justin Godown “A Novel Approach To Pediatric Heart Failure Quality Improvement Within The ACTION Network, Justin Godown, et al.” Friday, April 29th8:15–8:30 AM Neha Bansal “The Initial Analysis of Infectious Adverse Events in Pediatric Ventricular Assist Devices Reported to the ACTION Registry, Neha Bansal et al.” 1:30–1:45 PM Sharon Chen “Outcomes After Initial Heart Failure Consultation In Fontan Patients, Sharon Chen et al.” 5–6 PM | Poster Sessions
Visit ishlt.org/ishlt2022 for more information or to register for the conference. 
We are excited to share that over 1,000 devices have been entered into our VAD Registry!This milestone would not be possible without your efforts and collaboration. Data from these devices is used for quality improvement, labeling applications, as well as abstracts and manuscripts. The continuation of this data collection will help improve outcomes for all pediatric and ACHD patients affected by heart failure. Thank you! 
Farhan Zafar, MD, MSCincinnati Children’s WHAT MADE YOU WANT TO JOIN ACTION? WHAT IS YOUR FAVORITE ACTION MEMORY? WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION? WHERE IS YOUR FAVORITE TRAVEL DESTINATION? WHAT IS YOUR FAVORITE BOOK? WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU? 
Nora Hammond, MSN, APRN, CPNP-ACAnn & Robert H. Lurie Children's Hospital of Chicago WHAT MADE YOU WANT TO JOIN ACTION? WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION? WHERE IS YOUR FAVORITE TRAVEL DESTINATION? WHAT IS YOUR FAVORITE BOOK? WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU? 
Svetlana Shugh, MD, FAAPJoe DiMaggio Children’s Hospital WHAT IS YOUR FAVORITE ACTION MEMORY? OR WHAT MADE YOU WANT TO JOIN ACTION? WHAT PROJECT ARE YOU MOST EXCITED ABOUT MOVING FORWARD IN ACTION? WHERE IS YOUR FAVORITE TRAVEL DESTINATION?Anywhere there’s a sandy beach and I may not get cell service – it’s hard to find time to disconnect from all there is going on! WHAT IS YOUR FAVORITE BOOK? WHAT’S ONE THING THAT OTHER ACTION MEMBERS WOULDN’T KNOW ABOUT YOU? 
Quality Improvement UpdatesDe-Escalation (Discharge) Project 19 teams are testing the newly revised ACTION Flight Plan tool & patient/caregiver journey maps. For over a year, we have focused on improving discharge rates for VAD patients. We found that only about 50% of pediatric patients with CF-VADs are discharged from the hospital. We also found that 1/3 of VAD patients undergo transplant prior to discharge from the hospital. The scope of our project has now expanded to better understand factors influencing transplant listing, specifically de-escalation of care. Our eventual goal is to establish guidance on optimal timing for transplant for various populations to improve post-transplant outcomes. We will have a round-robin report out from our teams during our committee call on April 6th. Stroke ProjectThe next discussion meeting will be held on April 7th. We are reaching out to sites that have submitted stroke events to schedule them for upcoming clinical discussion meetings. By reviewing each individual stroke event we hope to reduce stroke rates even further for VAD patients. Please continue joining us for our stroke meetings the first Thursday of each month from 4:30–5:30 pm ET. Please email us with any questions! Medication Titration Project The project focus around optimizing and uptitrating medicines for heart failure patients is underway. In March, pilot sites began prospective data collection and testing the intervention worksheets. The Meds Titration committee will use the data and testing to inform and create an ACTION recommended protocol. Download the Outpatient Medication Titration Recommendation tool, and use it as a reference during titrations. TIP: Print it out double sided and laminate to keep with providers! Heart Failure Project The Heart Failure committee’s leadership is developing a more efficient and impactful plan for the existing HF data entry and quality improvement initiatives. The proposed plan will be presented and discussed at the in-person ACTION meeting (@ISHLT) on April 26th and details will be distributed via email. If you are attending the ACTION Meeting at ISHLT and have not yet RSVP’d, please do so here. The next virtual HF committee meeting will be on May 31st. 
Registry Database Updates— NEW! — |
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April 30, 2024
An Introduction to Myocarditis
March 20, 2024
Fontan Surveillance Resource Tool
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October 30, 2023
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