Transplant Archives - Advanced Cardiac Therapies Improving Outcomes Network

Owen’s Story: A Journey of Resilience and Hope

Born with a complex congenital heart defect, Owen has faced more medical challenges in his 20 years than most do in a lifetime, however his resilience and optimism have carried him through. Today, he’s thriving as a college student with dreams of becoming a physician’s assistant and raising awareness about organ donation. His journey—from patient to future healthcare provider—is a testament to the power of perseverance, community support, and lifesaving health care.

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The Pulse — February 2024

News, The Pulse

Let’s make 2025 our best year yet! We wrapped 2024 with the exciting announcement for the FDA expanded label of Johnson & Johnson MedTech’s Impella Support System to include treatment for certain children suffering from heart failure. Achievements like this would not be possible without the continued efforts and dedication of our ACTION centers providing care to these patients, as well as entering, cleaning, and adjudicating the data. We also continued access to the Berlin Heart Active Driver under the extended trial, and we published many new ACTION manuscripts.

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The Pulse — November 2024

News, The Pulse

Happy Fall to All! We had a successful meeting during the Single Ventricle Investigators Meeting in Denver this month, and it was great to see so many of you in person! Many new junior faculty and leaders of all experience levels have joined ACTION, and we are excited to continue our progress in the VAD, Heart Failure, Muscular Dystrophy, and Fontan spaces. We are grateful for the engagement and collaboration from all stakeholders that continue to excel our research, quality improvement, education, and advocacy efforts.

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Pediatric Learning Health Networks in Solid Organ Transplantation—Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation

ACTION Publication, Publications

ACTION and the Academic Research Consortium (ARC) aimed to harmonize definitions of pediatric and CHD AEs for use in clinical trials, registries, and regulatory evaluation.

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Fontan Surveillance Resource Tool

News, Updates

We’re excited to introduce 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

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Outcomes after initial heart failure consultation in Fontan patients

ACTION Publication, Publications

Patients with Fontan failure are high-risk candidates for heart transplantation and other advanced therapies. Understanding the outcomes following initial heart failure consultation can help define appropriate timing of referral for advanced heart failure care.

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Defying the Odds: Riley’s Life with Duchenne

Patient Stories, Stories

On any given day, you may find Riley watching live sports in his home state of Montana. You may not know that Riley has been living with Duchenne Muscular Dystrophy since he was 3 years old. With his family’s fierce support, he’s lived wholeheartedly despite the challenges of his condition. From intensive heart transplant surgery to obtaining a college degree, Riley follows his mother Nina’s advice: that a “life is meant to be lived.”

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Care Across State Lines: Ricky’s Journey to Life-Saving Surgery

Patient Stories, Stories

Ricky was diagnosed with Duchenne Muscular Dystrophy (DMD) within the first year of his life. With the unyielding support of his mother, Rosie, he has defied the odds of a complex disease. From diagnosis to treatment, and now recovery, Ricky goes everywhere, experiencing life to the fullest.

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Reducing donor acceptance practice variation – Learnings from a discussion forum

ACTION Publication, Publications

Although waitlist mortality is unacceptably high, nearly half of donor heart offers are rejected by pediatric heart transplant centers. ACTION and PHTS convened a multi-institutional donor decision discussion forum (DDDF) aimed at assessing donor acceptance practices and reducing practice variation.

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