ACTION

ACTION has been a member of Linktree for 6 years and joined in October 2020. Resources action4hf_chd has populated their site with include: • ABOUT ACTION • Explantation Of Durable Ventricular Assist Device For Myocardial Functional Recovery In Children: A Report From The ACTION Registry - Advanced Cardiac Therapies Improving Outcomes Network • Explore ACTION on YouTube • Clinical Outcomes and Complications in Pediatric Ventricular Assist Devices Implanted as Bridge to Candidacy - Advanced Cardiac Therapies Improving Outcomes Network • ACTION: A Multicenter Registry and Learning Health System for Pediatric and Congenital Heart Disease Associated Heart Failure • HeartMate 3 in Pediatric and Complex Populations: Physiologic Rationale, Patient Selection, and Management Strategies - Advanced Cardiac Therapies Improving Outcomes Network • Use of SGLT2 Inhibitors in Dystrophin Deficient Cardiomyopathy: A Multi-center Study Using the ACTION Registry - Advanced Cardiac Therapies Improving Outcomes Network • Kerry Schindler - ACTION Member of the Month • Department of Defense Funds ACTION to Advance Duchenne Muscular Dystrophy Cardiac Research - Advanced Cardiac Therapies Improving Outcomes Network • Infections in Pediatric Paracorporeal VADs: ACTION Study • Beta-Blocker Timing in Pediatric Heart Failure: ACTION Study • Registration - ACTION VAD IRL Series | Session 1: The Wait Is Not a Pause: Helping Children Thrive While Awaiting Transplant • Cardiac Care for Pediatric Oncology Patients - Advanced Cardiac Therapies Improving Outcomes Network • Improving Treatment & Outcomes for Children with Muscular Dystrophy - Advanced Cardiac Therapies Improving Outcomes Network • Events - Advanced Cardiac Therapies Improving Outcomes Network • ASAIO 2026 Abstract - D Tolani - Predictors of Major Adverse Events Among Pediatric Patients undergoing HeartMate 3 Implantation: An ACTION registry study • ACTION Publication Proposal Request - ACTION Learning Network • ASAIO 2026 Abstract - C Freitas - Invasive Fungal Infection in Pediatric Ventricular Assist Device Support: An ACTION Registry Analysis • ASAIO 2026 Abstract - K Puri - Development and Utilization of Stage of Pediatric Cardiogenic Shock (STOP-CS) Severity Classification • ASAIO - 72nd Annual Conference - June 17 - 20, 2026 • Prospective Multicenter Evaluation of a Novel Active Driving System for Pediatric Ventricular Assist Device Support - Advanced Cardiac Therapies Improving Outcomes Network • Multicenter Registry Analysis of Bivalirudin for Primary Anticoagulation in Pediatric HeartMate 3 Recipients: ACTION Analysis - Advanced Cardiac Therapies Improving Outcomes Network • ACTION Events Calendar • Meeting Report: Expanding Access to Advanced Cardiac Therapies, Including Ventricular Assist Devices (VADs) and Heart Transplantation in Muscular Dystrophy - Advanced Cardiac Therapies Improving Outcomes Network • Pediatric Device Showcase: Cardiovascular Focus presented by MPDC & ACTION Tickets, Friday, May 15 from 8 am to 5:30 pm | Eventbrite • Double Bridge to Heart Transplantation: Outcomes of Early vs Delayed Extra Corporeal Membrane Oxygenator Crossover in Pediatric Population - Advanced Cardiac Therapies Improving Outcomes Network • Patients and Caregivers – myactioneducation.org • CPR Emergency Algorithms & Care Guide – myactioneducation.org • ACTION @ STS: Outcomes of Ventricular Assist Device Placement in Pediatric Patients with Renal Dysfunction Requiring Dialysis: An ACTION Registry Analysis - Advanced Cardiac Therapies Improving Outcomes Network • VAD and Heart Transplantation in DMD: Guidance for Providers - Advanced Cardiac Therapies Improving Outcomes Network • Faith, Fight, and a Second Heart: Marylu’s Story - Advanced Cardiac Therapies Improving Outcomes Network • Dystrophinopathy in ACTION: The first 500 males enrolled in the Advanced Cardiac Therapies Improving Outcomes Network prospective dystrophinopathy registry - Advanced Cardiac Therapies Improving Outcomes Network • Translating Vision into Reality: An Interview with Kurt Dasse, PhD - Advanced Cardiac Therapies Improving Outcomes Network • The Heart of Innovation: Dr. Rich Wampler’s Journey from Loss to Life-Saving Discovery - Advanced Cardiac Therapies Improving Outcomes Network • ACTION @ 2025 Scientific Sessions: Prevalence and Risk Factors for Ventricular Assist Device-Associated Infection in Children - Advanced Cardiac Therapies Improving Outcomes Network • NEW! Impella Patient Education Handbook - Advanced Cardiac Therapies Improving Outcomes Network • Use of SGLT2 inhibitors in pediatric heart failure: a multi-center study - Advanced Cardiac Therapies Improving Outcomes Network • 30th Annual Congress of World Muscle Society - ACTION Abstract - Hayes et al • Patient & Family Stories - Advanced Cardiac Therapies Improving Outcomes Network • iDECIDE-VAD-PEDIATRIC: Development of a Decision Aid to Assist Children and Their Caregivers When Considering a Ventricular Assist Device - Advanced Cardiac Therapies Improving Outcomes Network • Cardiotoxicity and Cancer Handout - ACTION & International Cardio-Oncology Society (IC-OS) • Fontan ACTION Plan for Patients - Advanced Cardiac Therapies Improving Outcomes Network • Critical care management of right ventricular failure in pediatric left ventricular assist devices: An advanced cardiac therapies improving outcomes network (ACTION) endorsed statement - Advanced Cardiac Therapies Improving Outcomes Network • Register Here: ACTION VAD Bootcamp | 10/15/2025 • ACTION MD Gene Therapy – myactioneducation.org • Our Definitions • Pulmonary Artery Banding in Infants and Young Children with DCM - Advanced Cardiac Therapies Improving Outcomes Network • A Full-Circle Moment: 11 Years After Juliana’s Heart Transplant - Advanced Cardiac Therapies Improving Outcomes Network • ACTION Academic Process Road Map - Download • Contemporary Outcomes of Mechanical Circulatory Support Using Paracorporeal Continuous Flow Pump in Children: A Report From the ACTION Learning Network - Advanced Cardiac Therapies Improving Outcomes Network • VADs in Pediatric Patients Handout • Multi-institutional outcomes of Impella use in pediatric patients: A brief communication from the ACTION Network - Advanced Cardiac Therapies Improving Outcomes Network • 2025 Fontan Advanced Therapies & Outcomes Slide Deck • Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy - Advanced Cardiac Therapies Improving Outcomes Network • Harmonized Protocols - Updated! - Advanced Cardiac Therapies Improving Outcomes Network • Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) - Advanced Cardiac Therapies Improving Outcomes Network • 30th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session - Advanced Cardiac Therapies Improving Outcomes Network • Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis - Advanced Cardiac Therapies Improving Outcomes Network • ASAIO - 2025 Preliminary Program • Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers - Advanced Cardiac Therapies Improving Outcomes Network • ASAIO - Timing of a BiVAD: Does Earlier RVAD Implant Confer a Survival Advantage? • Impella®- One Page Summary (OPS) - Advanced Cardiac Therapies Improving Outcomes Network • Capturing Physiologic Data in Children with Heart Failure Using Wearable Digital Technology: Lessons From Pilot Project • Our Publications • The ACTION VAD registry: A collective five-year experience • ACTION @ ISHLT 2025 Details • ACTION @ Heart Rhythm 2025 • Apixaban Anticoagulation for HeartMate 3 Ventricular Assist Device Support in Children and Young Adults: ACTION Analysis of Real World Utilization • Characteristics and Outcomes of the Impella VAD in Pediatric Patients: A Report from the ACTION Learning Network • Outcomes in Children Supported with Paracorporeal Continuous Compared to Paracorporeal Pulsatile Ventricular Assist Devices • ACTION Webinar Registration: HeartMate 3 Driveline Infections • Growing Understanding of Ventricular Assist Device Outcomes in Infants with Stage 1 Single Ventricle Palliation • A Contemporary Look at the Hazard of Stroke Across a Year of Support on Pediatric Paracorporeal VAD Support Using the ACTION Registry • Berlin Heart EXCOR Outcomes in the Current Era: A Report from the ACTION Registry • Evaluation of Gender Disparities Among Pediatric Patients with the Heartmate 3 Ventricular Assist Device @ ISHLT 2025 • Bridging gaps in pediatric device development: The power of ACTION – a collaborative learning network • Initial ACTION Multicenter Experience with Wireless Pulmonary Artery Pressure Monitoring in Children and Adults with Congenital Heart Disease • Current Global Trends and Challenges Utilizing Pediatric Ventricular Assist Devices: An ACTION Collaborative Survey • Outcomes for Children With Congenital Heart Disease Undergoing Ventricular Assist Device Implantation: An ACTION Registry Analysis • Long-Term Outcomes of Ventricular Assist Devices in Obese Pediatric Patients: An ACTION Registry Study • Beta-Blocker Initiation in Pediatric Heart Failure • Over 100 Fontan Patients on Systemic Ventricular Assist Device Support: An ACTION Update • Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee • Registration for The Apixaban Experience in the HeartMate3 Patient Population | 4/10/25 4:30pm ET • Ventricular assist device implantation in children with a mechanical valve: An ACTION registry analysis • Current state of neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices: an Advanced Cardiac Therapies Improving Outcomes Network and Cardiac Neurodevelopmental Outcome Collaborative collaborative survey • Proposal Submissions • Taking ACTION to detect myocarditis related to recombinant gene transfer therapy for Duchenne Muscular Dystrophy; Consensus recommendations for cardiac surveillance • ACTION @ Cardiology 2025: Use of SGLT-2 inhibitors in patients with Dystrophinopathy • ACTION @ Cardiology 2025: Visit the ACTION Booth! • Understanding Genetics - ACTION • Owen’s Story: A Journey of Resilience and Hope - Advanced Cardiac Therapies Improving Outcomes Network • Understanding Your HF Diagnosis • MyACTIONEducation.org • Adjudicating Registry Data: Benefits and Pitfalls – The ACTION Experience • HeartMate3 LVAD – Updated Patient Education Handbook • ACTION Centers Collaborate with Johnson & Johnson MedTech to Secure FDA Labeling for Impella Support System in Pediatric Patients - Advanced Cardiac Therapies Improving Outcomes Network • Suboptimal Titration of Heart Failure Medications in Pediatric Patients: Baseline Data from ACTION • ACTION/PHTS Virtual Donor Decision Conference December 13, 2024 | 1-6pm ET • DONATE | ACTION • Development and Validation of a Novel Pediatric Mechanical Circulatory Support Risk Stratification Tool: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Ventricular Assist Device Score • Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation • ACTION-ARC Pediatric and Adult Congenital Heart Disease Ventricular Assist Device Adverse Event Definitions-2023 • ACTION Abstracts Poster Session | 2024 PCICS Annual Meeting • Proposal Submission Form • ACTION Abstracts Poster Session | 29th Annual Congress of World Muscle Society • Improving Treatment & Outcomes for Children with Muscular Dystrophy • ACTION @ CNOC in St. Louis - An ACTION and CNOC Collaborative Survey - Advanced Cardiac Therapies Improving Outcomes Network • Exploring Medicine Treatment Options – myactioneducation.org • Fontan Advanced Therapies & Outcomes Slide Deck • ACTION Fellows Survey • HeartMate 3™ LVAD Patient Education Handbook for ADULTS • ASAIO - Christopher Knoll MD - Clinical Characteristics and Outcomes of Pediatric Destination Ventricular Assist Devices • Sarepta Therapeutics Announces Expanded US FDA Approval of ELEVIDYS to Duchenne Muscular Dystrophy Patients Ages 4 and Above | Sarepta Therapeutics, Inc. • Pfizer Provides Update on Phase 3 Study of Investigational Gene Therapy for Ambulatory Boys with Duchenne Muscular Dystrophy | Pfizer • Mechanical Ventilation and Outcomes of Children Who Undergo Ventricular Assist Device Placement: 2014–2020 Linked Analysis From the Advanced Cardiac Therapies Improving Outcomes Network and Pediatric Cardiac Critical Care Consortium Registries - Advanced • Outcomes of Intracorporeal Continuous and Paracorporeal Pulsatile Ventricular Assist Devices in Pediatric Patients 10–30 kg - Advanced Cardiac Therapies Improving Outcomes Network • June 3 @ 12pm ET | ACTION Global Learning Session - Global Pediatric VAD Use • Transcatheter Axial Pump Use in Pediatric Patients on Veno-Arterial Extracorporeal Membrane Oxygenation: An ACTION Collaborative Experience - Advanced Cardiac Therapies Improving Outcomes Network • An Introduction to Myocarditis | ACTION Educational Handout • Heart Transplant Waiting List Process & Resources – My ACTION Education • 2024 Pediatric Transplant Conference • Aamir Jeewa - April 2024 ACTION Member of the Month • ISHLT 2024 Abstract Schedule • Multicenter outcomes for ventricular assist device support for failed stage II palliation - Advanced Cardiac Therapies Improving Outcomes Network • Impact of HeartWare VAD discontinuation on the pediatric population: An ACTION registry analysis - Advanced Cardiac Therapies Improving Outcomes Network • February's National Heart Health Month: 66 Hospitals Unite Nationwide under ACTION to Bridge Gaps in Pediatric Cardiac Care - Advanced Cardiac Therapies Improving Outcomes Network • Care Across State Lines: Ricky's Journey to Life-Saving Surgery - Advanced Cardiac Therapies Improving Outcomes Network • NEW Fontan Referral & Surveillance Roadmap (for Providers) • RSVP | ACTION at CHOP Cardiology Conference | Scottsdale - February 2024 • Stretching – Cross Body | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Check out ACTION ambassador, Julian Lerner, on the kid-friendly Zigazoo social media platform! • Full Body – Lunge & Raise | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Warmup – High Knees | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Cardio - Star Jump | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Legs - Curtsy Squats | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Arms - YTW | Heart Healthy Exercise Series with Julian Lerner | ACTION x Julian • Outcomes after initial heart failure consultation in Fontan patients - Advanced Cardiac Therapies Improving Outcomes Network • Heart Healthy Video Series - Advanced Cardiac Therapies Improving Outcomes Network • Reducing donor acceptance practice variation – Learnings from a discussion forum - Advanced Cardiac Therapies Improving Outcomes Network • IDECIDE for Pediatrics - English • IDECIDE for Pediatrics- Spanish • ASAIO Abstracts Submission Site • Clinical Outcomes of SARS-CoV-2 Infection in Pediatric Patients on Ventricular Assist Device Support: An Action Registry Analysis - Advanced Cardiac Therapies Improving Outcomes Network • 2022 ACTION-VAD Registry data report • Proposal Submission Site • Muscular Dystrophy Resource Tools - Advanced Cardiac Therapies Improving Outcomes Network • PediMag™ & CentriMag™ OPS • Muscular Dystrophy: An Introduction to Heart Failure • Berlin Heart EXCOR® Patient & Family Education Handbook Now Available in Spanish! - Advanced Cardiac Therapies Improving Outcomes Network • 8th World Congress of Pediatric Cardiology and Cardiac Surgery • Successful Implementation of Telehealth Visits in the Paediatric Heart Failure and Heart Transplant Population - Advanced Cardiac Therapies Improving Outcomes Network • FDA grants approval via accelerated approval pathway to ELEVIDYS: First-ever gene therapy for individuals with Duchenne ages 4-5 • Taking ACTION: A Prognostic Tool for Pediatric Ventricular Assist Device Mortality - Advanced Cardiac Therapies Improving Outcomes Network • First Pediatric Cardiac Device IDE Trial (Berlin Heart EXCOR® Active Driver) has Completed Enrollment Using the ACTION Registry - Advanced Cardiac Therapies Improving Outcomes Network • Book Club Recording | Things My Therapist Doesn't Want Me to Say - Ten Years Post Transplant - Emma Rothman • From ACTION Patient to Summer Intern: Sam’s Story • VAD Discharge at Pediatric Centers- Why can't we get home? | Dr. Hari Tunuguntla et al. • Over 100 Fontan Patients on Ventricular Assist Device Support: An ACTION Update | Dr. Sharon Chen, et al. • Improving Treatment Options & Outcomes for Children with Heart Dysfunction - Advanced Cardiac Therapies Improving Outcomes Network • 8/3 Book Club RSVP | Things My Therapist Doesn’t Want Me to Say: Ten Years Post Heart Transplant by Emma Rothman • Fall ACTION Mtg - 9/21 in St. Louis, MO - RSVP Today! • Expanding Use of the HeartMate 3 VAD in Patients within ACTION • ACTION SGLT2 Inhibitor Info Sheet • Upcoming ACTION Events • ACTION Abiomed Impella OPS • Berlin Heart Active Driver Trial Update from ACTION and Berlin Heart, Inc. • Network Stroke Data- Updated April 2023 • Spring 2023 Meeting - Advanced Cardiac Therapies Improving Outcomes Network • Andrea Fasbinder | Featured ACTION Member • Congenital Cardiology Today Article • International Pediatric VAD and Heart Failure Summit , Sept 22-23, 2023 • National Donate Life Month • ACTION Meeting @ ISHLT 2023 • Dr. Carlos Bonilla Ramirez | ACTION @ ISHLT '23 • Dr. Erik Frandsen | ACTION @ ISHLT '23 • Dr. Edon Rabinowitz | ACTION @ ISHLT '23 • Dr. Carol Wittlieb-Weber | ACTION @ ISHLT '23 • Dr. Joey Spinner | ACTION @ ISHLT '23 • Dr. Deip Nandi | ACTION @ ISHLT '23 • Dr. Sabena Hussain | ACTION @ ISHLT '23 • Dr. Rob Niebler | ACTION @ ISHLT '23 • Hearts & Minds: Neurodevelopment in Pediatric Heart Failure and VAD Patients • ACTION Member of the Month Nomination • Innovative Technologies for Monitoring Children with Heart Failure • Ventricular Assist Device Development: Women and Children... : ASAIO Journal • VAD Discharge & De-Escalation of Care • Our Patients • iDecide VAD Pediatric Patient Decision Aid Infosheet • Our Sites • Our Projects • Our Collaborative • Patient Education • Jennie McAllister | Featured Member • July 14 Virtual Learning Session • Brynn's Story • Press Release | Parent Project Muscular Dystrophy • Research Highlights • Rachel White | Member of the Month • Deip Nandi | Member of the Month • Berlin Heart EXCOR® handbook • HeartMate 3™ LVAD Patient Education Handbook • Nancy Jaworski | Member of the Month • Farhan Zafar | Member of the Month • Nora Hammond | Member of the Month • Raylan's Story • Julianna's Story • Member of the Month Nomination Form • Patient Stories • Brandon's LVAD Story • Infographic: ACHD Patient Journey with HeartMate 3™ LVAD • 2020 Data Report • 2020 Highlights Report