IMPACT

Our Projects

Our novel projects and initiatives are driving change for pediatric and adult congenital heart disease patients whom are at risk of heart dysfunction or heart failure. Read more below about our focus areas and individual projects.

Our Initiatives in ACTION

Improving Treatment Options and Outcomes for Children with Heart Failure

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.
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Decreasing Complications After Ventricular Assist Device (VAD) Implant

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.
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Real World Evidence to Broaden Treatment Options for Children with Heart Failure

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.
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Prospective Trials Using a Registry as the Platform

The ACTION registry is being used to conduct prospective trials. Currently the Berlin Active Driver is being studied at 20 ACTION sites.
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Preparing Patients for Transplant & Maximizing Donor Acceptance

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.
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Innovative Technologies for Monitoring Children with Heart Failure

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.
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Harmonizing Care: Decreasing Unnecessary Variation in Care

Decreasing unnecessary variation in care has been extremely important to best outcomes. We learn from each other and alter care as a network.
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Education for Patients, Families, and Providers

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.
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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. ​
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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.
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