K.S.

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 »

The Pulse - October 2022

The Pulse — October 2022

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!

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

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 »

The Pulse July 2022

The Pulse — July 2022

It has been a few months since our last newsletter.  We are trying a new communication method: a “Forecast” email goes out every two weeks with important dates, meetings and resources; and newsletter, which now include data visualizations, will be distributed quarterly.

ACTION MD Projects

Improving Treatment & Outcomes for Children with Muscular Dystrophy

Patients with Muscular Dystrophy may develop cardiac dysfunction and may need advanced cardiac therapies. These therapies may include medications, ventricular assist devices or new technology for monitoring. Quality improvement and research methodologies are being used to improve the cardiac outcomes of this patient group.

Fontan Referral for Advanced Care

Patients with Fontan physiology may develop symptoms that require life-saving cardiac care such heart failure medicines, VAD support and/or transplantation. ACTION is working on timely referral for this cohort which is extremely important for optimal outcomes.