January 2023
![]() As 2023 brings new beginnings, ACTION reflects on what was accomplished in 2022 and what lies ahead. ![]() ![]() This past year, we launched a first of its kind Apple watch study for pediatric heart failure patients. Through an App built by the ACTION team, physical functional data is being collected to better understand heart failure patients on advanced cardiac therapies. The App collects data such as heart rate, 6-minute walk tests, step count, weight, etc. ![]() We also successfully launched our Heart Failure registry in ACTION, which will enable us to do quality improvement, research, and clinical trials for pediatric heart failure patients. ![]() In June 2022, we were awarded a $2 million grant from Parent Project Muscular Dystrophy (PPMD) to expand muscular dystrophy focused research and quality improvement initiatives. The full press release is available here. PPMD’s gift will allow the expansion of ACTION’s initiatives including:
![]() ![]() ![]() We also achieved a milestone of having over 1,200 patients entered into our Ventricular Assist Device (VAD) registry, and we launched our first prospective device trial, the Berlin Heart Active Driver Trial, using our real-world data registry model. We embarked a new education initiative for VAD patients with a 2-day series titled, In Real Life, in which VAD providers were educated on real-life situations, scenarios and challenges. Fontan Referral care also became a more prominent focus for ACTION in 2022. We held a quality improvement design meeting in which we identified problems, barriers, and potential interventions from our baseline data. New interventions and data collection will emerge in 2023. Closing out 2022 academically, we are proud of the 22 manuscripts we have published as a network to date. See Our Publications. We made great strides in improving outcomes for VAD, Heart Failure, Muscular Dystrophy, and Fontan patients in 2022. As 2023 begins, we are strategically planning to develop these four areas of ACTION further. Each focus area will have a registry for data collection, quality improvement initiatives, research, education, protocol harmonization efforts, and innovation projects. We also plan to further develop our relationships with device and pharmaceutical companies and the FDA to better serve these orphan populations. Regards, ![]()
![]() ![]() Enduring Hearts 2023 Spring Direct GrantFunding priorities for the 2023 Direct Program are: Deadlines: Send questions to: Grants@enduringhearts.org Meet Our Newest ACTION Team Member!Welcome Harish!Harish Gureddygari joined ACTION in December 2022 with a masters degree in computer science. He will be working as a Developer II.
Check it out!![]() The Berlin Heart ACTIVE Driver Trial Update![]() In conjunction with Berlin Heart, Inc., we launched the first prospective device trial using a pediatric ventricular assist device (VAD) registry. Historically, there has been a paucity of pediatric device and drug trials due to cost, patient volume and variability in heart failure etiology. We are collaborating with industry, patients and families and regulatory agencies to develop novel ways to bring innovative care to the bedside. We are using our registry data as ‘real world data’ for both prospective clinical trials and to apply for expanded FDA indications for pediatrics. The Berlin Heart Active Driver study will allow young heart failure patients implanted with a Berlin Heart VAD to rehabilitate and become stronger while awaiting heart transplantation. The currently approved IKUS driver is large, heavy and cumbersome. The new Active Driver is smaller and allows patients much greater mobility. Visit Our Trials to learn more. ![]() Featured Resources!Berlin Heart Emergency Algorithms & Care GuideCheck out our quick reference pocket guide with QR code links to our education site for each section and the full pdf for download at myactioneducation.org/emergencycare-berlinheart. ![]() ACTION @ ISHLT: Look Who’s Talking![]()
Stay tuned for final presentation dates and times on our social media, as well as an ACTION schedule of ISHLT events as we get closer to the ACTION meeting at ISHLT. ![]() Quality Improvement UpdatesAggregate network stroke data, updated January 27, 2023. 79 HeartMate 3TM and Berlin Heart patients have been entered in the De-Escalation Project. 47 of the 79 patients achieved de-escalation before either 1. activation for transplant, 2. completing hospital course to discharge, or 3. receiving their transplant. Achieving de-escalation means the patient was extubated, off inotropes, ambulating or age equivalent, and stated feeds. This project is designed to encourage patient stability prior to transplant. It is also an effort to encourage discharge of patients on HeartMate 3TM. Patients and parents told us how they’re feeling post-VAD implant. ![]() Registry Database UpdatesSimplified Clinical data as of January 27, 2023 ![]() Total # Patients Enrolled 1164 ![]() Total # Patients Enrolled 131 ![]() Total # Patients Enrolled 88 ![]() Total # Patients Enrolled 60 Meds Titration: 15 If you need access to enter data, or have any questions please email us. NEWSThe Pulse — July 2024
July 31, 2024
The Pulse — April 2024
April 30, 2024
An Introduction to Myocarditis
March 20, 2024
Fontan Surveillance Resource Tool
February 9, 2024
The Pulse — January 2024
January 31, 2024
Heart Healthy Video Series
December 7, 2023
The Pulse — October 2023
October 30, 2023
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