Jennifer Conway Archives - Advanced Cardiac Therapies Improving Outcomes Network

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 »

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis

ACTION Publication, Publications

The use of VADs in pediatric restrictive and hypertrophic cardiomyopathy is rare, but this ACTION multi-center registry analysis highlights that support is feasible, particularly in children with RCM. While the majority of patients were successfully bridged to transplant, outcomes were poorer in HCM patients, especially those requiring BiVAD support.

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis Read More »

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers

ACTION Publication, Publications

This study surveyed pediatric heart failure practitioners across ACTION centers to understand thromboprophylaxis practices in children with cardiomyopathy. The survey explored decision-making factors and medication choices using three clinical vignettes: dilated cardiomyopathy (DCM), left ventricular non-compaction (LVNC), and restrictive cardiomyopathy (RCM).

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers Read More »

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee

ACTION Publication, Publications

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.

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee Read More »

ACTION-ARC Pediatric and Adult Congenital Heart Disease Ventricular Assist Device Adverse Event Definitions-2023

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.

ACTION-ARC Pediatric and Adult Congenital Heart Disease Ventricular Assist Device Adverse Event Definitions-2023 Read More »

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.

Outcomes after initial heart failure consultation in Fontan patients Read More »

Successful Implementation of Telehealth Visits in the Paediatric Heart Failure and Heart Transplant Population

ACTION Publication, Publications

Abstract Advanced Cardiac Therapies Improving Outcomes Network (ACTION) and Pediatric Heart Transplant Society (PHTS) convened a working group at the beginning of 2020 during the COVID-19 pandemic, with the aim

Successful Implementation of Telehealth Visits in the Paediatric Heart Failure and Heart Transplant Population Read More »

Expanding Use of the HeartMate 3 VAD in Pediatric and Adult Patients within ACTION

ACTION Publication, Publications

ACTION set forth to report current outcomes in patients supported with the HeartMate 3 ventricular assist device in a multicenter learning network.

Expanding Use of the HeartMate 3 VAD in Pediatric and Adult Patients within ACTION Read More »

Initial Multicenter Experience with Ventricular Assist Devices in Children and Young Adults with Muscular Dystrophy: An ACTION Registry Analysis

ACTION Publication, Publications

Purpose Cardiac disease results in significant morbidity and mortality in patients with muscular dystrophy (MD). Single centers have reported their ventricular assist device (VAD) experience in specific MDs and in

Initial Multicenter Experience with Ventricular Assist Devices in Children and Young Adults with Muscular Dystrophy: An ACTION Registry Analysis Read More »

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION

ACTION Publication, Publications

The results of an ACTION-wide survey of pediatric cardiology providers are detailed in the latest ACTION publication, Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD):

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION Read More »

Jennifer Conway

Cardiac Medication Use in ACTION for Duchenne Muscular Dystrophy Cardiomyopathy

Ventricular Assist Device Use in Pediatric Restrictive and Hypertrophic Cardiomyopathy: An ACTION Registry Analysis

Practice Variation in Thromboprophylaxis Management of Outpatient Pediatric Cardiomyopathy Patients: Survey of ACTION Providers

Cardiac treatment for Duchenne muscular dystrophy: consensus recommendations from the ACTION muscular dystrophy committee

ACTION-ARC Pediatric and Adult Congenital Heart Disease Ventricular Assist Device Adverse Event Definitions-2023

Outcomes after initial heart failure consultation in Fontan patients

Successful Implementation of Telehealth Visits in the Paediatric Heart Failure and Heart Transplant Population

Expanding Use of the HeartMate 3 VAD in Pediatric and Adult Patients within ACTION

Initial Multicenter Experience with Ventricular Assist Devices in Children and Young Adults with Muscular Dystrophy: An ACTION Registry Analysis

Current Practices in Treating Cardiomyopathy and Heart Failure in Duchenne Muscular Dystrophy (DMD): Understanding Care Practices in Order to Optimize DMD Heart Failure Through ACTION

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