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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,
(working on data sharing)
Freeman Hospital
Newcastle upon Tyne, England - Teresa Chila, MD
- Claire McGraith, RN
- Emma Simpson, BMBS
Osaka University
Suita, Osaka, Japan
Medical University of Vienna
Vienna, Austria - Roxana Moayedifar, MD, PhD
- Julia Riebandt Priv.-Doz. DDr.
- Thomas Schlöglhofer PhD, MSc
- Daniel Zimpfer Univ.-Prof. PD Dr.
King Faisal Specialist Hospital & Research Center
Riyadh, Saudi Arabia
KK Women's and Children's Hospital
Singapore - Tan Teing Ee
- Poh Pei Fen
- Poh Bao Hui
- Kerk Ka Lee
- Karen Ng Yoke Leng
- Yang Liying
- Anuradha (Anu) Menon, MD
- Masakazu Nakao
- Sreekanth Raghavan
- Cumaraswamy Sivathasan
- Sreekanthan Sundaraghaven
- Tracy Tan Yi Shuen
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12th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative
September 12–14 | St. Louis, MO
St. Louis Children’s Hospital at Washington University
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ACTION @ CNOC: Sept. 13, 6–7:30 pm
Catherine Dusing, PhD Current State of Neurodevelopmental and Psychosocial Care Practices for Pediatric Patients with Ventricular Assist Devices: An ACTION and CNOC Collaborative Survey
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Conference Info
Single Ventricle Investigator Meeting
October 17–19 | Denver, CO
Presented by Additional Ventures
+ ACTION Leadership Meeting
Conference Info | Register
ISHLT 45th Annual Meeting & Scientific Sessions
April 27 – 30 | Boston, MA
Submit an ACTION abstract proposal to the ACTION DCC by 8/31
Conference Info
Nominate a colleague for
ACTION Member of the Month!
Submit
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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.
Why did you want to join ACTION?
As an international medical graduate, I recognize the profound impact that innovative research can have on treatment outcomes and the quality of life for children with heart failure. ACTION embodies my values in its commitment to advancing care through research and quality improvement. The organization's extensive network of centers, utilizing shared data and up-to-date treatment protocols, ensures the best patient outcomes across all locations. I am excited about the opportunity to learn from and collaborate with a team of dedicated and compassionate professionals who are equally committed to improving the lives of patients and their families. This role represents the perfect chance to contribute to world-class research while growing professionally in a supportive and collaborative environment. What is your favorite part of
ACTION?
My favorite part of ACTION is the collaborative environment it fosters. By bringing together healthcare experts, researchers, patients, and families, ACTION creates a dynamic and supportive network where innovative ideas and best practices are shared freely. Additionally, ACTION's strong focus on education and sharing personal stories is truly empowering. Providing accessible educational resources and sharing patient and family experiences not only enhances understanding but also inspires and motivates everyone involved. Being part of a team that is dedicated to both high-quality research and compassionate patient care is incredibly inspiring and fulfilling. What are some of the things that you enjoy doing outside of work?
I love exploring coffee shops and am excited to discover the unique coffee spots in Cincinnati. Taking long walks is another favorite pastime, as it clears my mind, allows for self-reflection, and helps me realign my goals and thinking. Additionally, I love traveling and spending quality time with family and friends, which brings joy and balance to my life.
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 .
ISHLT 45TH Annual Meeting & Scientific Sessions
John B. Hynes Veterans Memorial Convention Center in Boston, MA, USA
Sunday, April 27 – Wednesday, April 30, 2025.
Working to Empower Female Heart Failure Cardiologists Worldwide
As 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...
HeartMate 3™ LVAD Patient Education Handbook for ADULTS
We 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.
What you’ll find inside: - Understanding VADs
- Surgical & hospital stay expectations
- Device education
- Self-care, including tips on medicines, nutrition, driveline care, etc.
- Potential challenges
- Daily life & safety, including advice on travel, exercise, intimacy, and other aspects of daily life with an LVAD
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 Deck
The 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.
Dystrophinopathy Ambulatory Electrophysiologic Monitoring Harmonization
See Muscular Dystrophy dropdown
Sodium-Glucose Costransporter-2 Inhibitors (SGLT2i)
See Heart Failure dropdown
Quality Improvement Updates
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: - Consider stopping aspirin in current patients and/or an aspirin-sparing regimen in future HM3 patient
- Simplified Clinical VAD registry now includes 2 additional data fields on CF-VAD follow up forms, and AE forms asking about aspirin
usage
- If you deem that aspirin usage is medically necessary, then complete the registry field asking “why?” so we can understand which patients may or may not benefit from aspirin in our pediatric population
Questions? Email the MARCH project team at info@actionlearningnetwork.org.
Registry Database Updates
Simplified 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
CardioMEMS: 43
Apple Watch: 10
If you need access to enter data, or have any questions please email us.
Open Positions in ACTION Centers
The Congenital Heart Center at Levine Children’s Hospital
Charlotte, North Carolina
Looking for: Pediatric Heart Failure and Transplant Cardiologist to join the growing faculty as the Medical Director of Pediatric Advanced Heart Therapies Program. The director candidate will have completed an ACGME-accredited fellowship in pediatric cardiology and be BC/BE by the American Board of Pediatrics. A fourth year of additional training in pediatric heart failure and transplant, or a minimum of 5 years transplant experience is required. The candidate must meet the qualifications as the primary pediatric heart transplant physician as delineated by the OTPN and will oversee patient care, strategic
vision, program development, administration, safety and quality of the program. Clinical expertise with mechanical circulatory support devices is required. The Opportunity: The director will work closely with the Chief of Pediatric Cardiology and the Pediatric Cardiovascular Surgery Chief. Clinically will rotate equally on Heart Transplant/Heart Failure Inpatient and Outpatient Services, as well as general cardiology inpatient and outpatient care with shared night/weekend call. The Pediatric Advanced Therapies Program currently has 2 MDs, 2 dedicated APPs, 3 VAD/Transplant RN coordinators, a dietitian, and a social worker. The right candidate will have an opportunity to advance the strategic vision of the program, in addition to participating in clinical research and national committees. The
Congenital Heart Center is an active participant in PHTS and ACTION. To Apply: Email Amber Chau Administrative Assistant for Levine Children’s Congenital Heart Center
More info: See full position listing
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