ABOUT ACTION

Our Collaborative

We're improving outcomes for all patients with heart failure.

Now is the time for ACTION.

Our quality improvement and research-based approach drive our committee’s ongoing work. Initiatives include planning and implementation of quality improvement initiatives, data collection, education and program development materials, and much more. Discovery and improvement are often limited by small numbers of patients at any one care center; the open communication and transparency of outcomes between our members inspire inventive thinking and evidence-based practices to enhance standards of care and improve patient outcomes.

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Our Values

Innovation

We stay proactive for our patients by developing novel solutions. Our innovations are enhanced by QI, research, and technology. Our technological studies include real time education to monitor patients with cardiac disease and improve their outcomes.

Collaboration

Our community of healthcare experts, patients, caregivers, researchers, and industry members grows daily. We harness/utilize the power of shared information and open communication to learn from experiences.

Education

Pediatric heart failure is complicated and often misunderstood – even by those affected by it. ACTION provides free, clinician-approved guides, learning sessions, and online programs for patients, families and caregivers. MyACTIONEducation.org

Advocacy

We’re ensuring every patient is on the path to heart success. Pediatric heart failure is often overlooked, underfunded, and understudied. We’re here to give a voice to heart failure patients so they no longer stay silent.

Data & Tech

We work with real-world data and outcomes to harmonize protocols globally so each and every patient receives the very best care.

Our Projects

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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Check out our interactive and clinician-approved learning site for patients, caregivers, and providers. Our site connects the dots from the start of your journey to the road to recovery.
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