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Improving pediatric heart failure outcomes through collaboration and innovation: The current status of the Advanced
Lydia K Wright1, David M Peng2, Joseph A Spinner3
1Heart Center, Nationwide Children's Hospital, Columbus, OH.
Insights
The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) improves pediatric heart failure care using real-world data. This learning health system enhances device access and care practices for better patient outcomes.
Area of Science:
- Pediatric Cardiology
- Congenital Heart Disease
- Heart Failure Management
Background:
- The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) was established in 2017.
- It functions as a learning health care system.
- Its primary goal is to improve outcomes for pediatric and congenital heart disease patients experiencing heart failure.
Purpose of the Study:
- To summarize the network's evolution and key focus areas.
- To highlight advancements in pediatric heart failure care.
- To showcase the impact of real-world data utilization.
Main Methods:
- Formation of a collaborative network of stakeholders.
- Collection and analysis of real-world data.
- Focus on key areas: ventricular assist devices (VAD), heart failure, muscular dystrophy, and Fontan procedures.
Main Results:
- Expanded scope from VAD to comprehensive heart failure management.
- Improved understanding of best practices in pediatric heart failure care.
- Increased access to pediatric-labeled devices previously approved only for adults.
Conclusions:
- ACTION has significantly contributed to advancing pediatric heart failure care.
- Real-world data is crucial for improving treatment strategies and device accessibility.
- The network's work spans critical areas, demonstrating a holistic approach to complex pediatric cardiac conditions.
Abstract:
The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) was founded in 2017 as a learning health care system to bring together all stakeholders with the aim of improving outcomes for pediatric and congenital heart disease patients with heart failure. From an initial focus on the ventricular assist device (VAD) population, work in the network has expanded to encompass the scope of heart failure in these patients. 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.
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