Why the study?
Improving outcomes in pediatric end-stage heart failure requires cross-institutional collaboration due to the rarity and heterogeneity of the condition.
The ACTION network was established to foster collaboration, share learnings, and improve outcomes for pediatric patients with congenital heart disease and end-stage heart failure.
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Enables multi-center collaboration to address pediatric heart failure care gaps; leaves open demonstration of improved outcomes pending data collection.
Improving the outcomes of pediatric patients with congenital heart disease with end-stage heart failure depends on the collaboration of all stakeholders; this includes providers, patients and families, and industry representatives. Because of the rarity of this condition and the heterogeneity of heart failure etiologies that occur at pediatric centers, learnings must be shared between institutions and all disciplines to move the field forward. To foster collaboration, excel discovery, and bring data to the bedside, a new, collaborative quality improvement science network-ACTION (Advanced Cardiac Therapies Improving Outcomes Network)-was developed to meet the needs of the field. Existing gaps in care and the methods of improvement that will be used are described, along with the mission and vision, utility of real-world data for regulatory purposes, and the organizational structure of ACTION is described.
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Lorts et al. (2020) studied this question.
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