K.S.

Teenager Fontan Referral

Considerations for Advanced Heart Failure Consultation in Individuals With Fontan Circulation: Recommendations From ACTION

Individuals with Fontan circulation are at risk of late mortality from both cardiac and noncardiac causes. Despite the known risk of mortality, referral indications for advanced heart failure care vary […]

Considerations for Advanced Heart Failure Consultation in Individuals With Fontan Circulation: Recommendations From ACTION Read More »

SynCardia OPS

Check out the newest One Page Summary (OPS) featuring the SynCardia (TAH-t). The OPS includes device size selection, components, function, settings and readings, as well as highlighting anticoagulation, blood pressure,

SynCardia OPS Read More »

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience

Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality but are underutilised in paediatric cardiac care. This ACTION study, Patient and parent-reported outcomes in paediatric ventricular assist

Patient and Parent-Reported Outcomes in Paediatric VAD Support: A Multi-Center ACTION Learning Network Feasibility and Pilot Experience Read More »

The Pulse, January 2023

The Pulse — January 2023

Happy Fall! We are looking forward to seeing you virtually during our Fall Meeting on Tuesday, November 8, from 1–5pm ET. Registration details are included below.
We have had a busy couple of months since our last newsletter in July, including the pilot launch of the Heart Failure registry, a successful Fontan Referral design meeting, and reaching over 1,000 patients entered into our VAD Registry. Join us for our Fall Meeting to see what’s coming for the rest of 2022!

The Pulse — January 2023 Read More »

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study

One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.

End-of-Life in Pediatric Patients Supported by Ventricular Assist Devices: A Network Database Cohort Study Read More »

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

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 »