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.
Improving Treatment & Outcomes for Children with Muscular Dystrophy Read More »
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.
Fontan Referral for Advanced Care Read More »
We continually work to improve and develop educational resources on heart failure and advanced therapies, such as VADs. Our materials, both written and electronic, are designed for a wide variety of user groups including patients, caregivers, and clinical providers.
Education for Patients, Families, and Providers Read More »
Decreasing unnecessary variation in care has been extremely important to best outcomes. We learn from each other and alter care as a network.
Harmonizing Care: Decreasing Unnecessary Variation in Care Read More »
We are using innovation to monitor our patients more effectively. Projects include the use of wearable devices and the off-label use of the CardioMEMsTM device and electronic collection of patient reported outcomes.
Innovative Technologies for Monitoring Children with Heart Failure Read More »
Transplant outcomes are improved if patients are strong going into the surgery. We have many projects focused on the right time for transplantation. Donor availability is an ACTION priority and can be improved by sharing experiences on donor acceptance and perfecting best donor recipient size match.
Preparing Patients for Transplant & Maximizing Donor Acceptance Read More »
The ACTION registry is being used to conduct prospective trials. Currently the Berlin Active Driver is being studied at 20 ACTION sites.
Prospective Trials Using a Registry as the Platform Read More »
Using data collected by the providers we are able to evaluate safety of medicines and devices. This is a cost effective and efficient way to bring new therapies to the bedside.
Real World Evidence to Broaden Treatment Options for Children with Heart Failure Read More »
Some heart failure patients may need a VAD to pump their blood. These devices can be associated with adverse events such as strokes, bleeding, or infection. Using quality improvement and research methodology we’ve decreased stroke rates by 50% and continue to focus on decreasing all VAD therapy complications.
Decreasing Complications After Ventricular Assist Device (VAD) Implant Read More »
Focused on improving the care of patients with heart dysfunction or heart failure. Using both quality improvement and research methodology we are focused on improving care team communication, goal directed medical therapy (GDMT), quality of life and myocardial recovery.
Improving Treatment Options & Outcomes for Children with Heart Dysfunction Read More »
