Harmonized Protocols – Updated!
ACTION now has nearly 40 Harmonized Protocols!
Harmonized Protocols – Updated! Read More »
Muscular Dystrophy
Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy
In a prospective study of 265 males with Duchenne Muscular Dystrophy, nearly 30% of those with moderate or severe heart dysfunction were not receiving full consensus-directed cardiac therapy, and most did not reach target medication doses—highlighting the need to optimize treatment strategies as cardiac disease becomes a leading cause of death in DMD.
Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy Read More »
Improving Pediatric Heart Failure Outcomes Through Collaboration and Innovation: The Current Status of the Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
Through the collection and use of real-world data, the field has gained greater understanding of best practices in care of these patients, as well as improved access to devices with pediatric labeling of devices previously approved only for adults. Recent and current work across the network’s major focus areas (VAD, heart failure, muscular dystrophy, and Fontan) are highlighted.
30th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session
Support ACTION in Vienna! ACTION Accepted Abstract Transplantation in Males with Dystrophinopathy: An Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Dystrophinopathy Registry Analysis Emily Hayes, MD et. al.
30th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session Read More »
The Pulse — April 2025
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.
The Pulse — April 2025 Read More »
Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee
An expert opinion statement, addressing a critical gap in cardiac care for Duchenne muscular dystrophy – providing thorough recommendations for the initiation and titration of cardiac medications based on disease progression and patient response.
The Pulse — February 2025
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.
The Pulse — February 2025 Read More »
Taking ACTION to detect myocarditis related to recombinant gene transfer therapy for Duchenne Muscular Dystrophy; Consensus recommendations for cardiac surveillance
Partnership of cardiologists with gene transfer therapy prescribers is essential to identifing patient-specific considerations that might influence risk for adverse cardiac events.
29th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session
What: Poster Session When: Friday, October 11 from 2:15-3:15 pm Dystrophinopathy in ACTION; Analysis of the first 500 males enrolled in the Advanced Cardiac Therapies Improving Outcomes Network prospective
29th Annual Congress of World Muscle Society- ACTION Abstracts Poster Session Read More »
The Pulse — July 2024
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!
The Pulse — July 2024 Read More »
