Nearly 40,000 infants born in the United States each year have some form of congenital heart disease (CHD), making it the most common birth defect affecting 1 in every 110 babies. Although pediatric cardiologists and researchers have improved outcomes considerably over the past few decades, many children still experience significant health issues over the course of their lifetimes, according to Michigan Medicine C.S. Mott Children’s Hospital.1
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To date, many of the largest research efforts in the field encompass only a small part of a patient’s and family’s experience with CHD: a surgery, a stay in the ICU, a hospitalization. Other entities focus on only one disease. While these efforts have been successful in their own regard, the lack of integration between groups of clinicians and researchers limits the effectiveness of research and quality improvement initiatives. Data live in siloed repositories and are difficult to access. Smaller organizations are unable to develop infrastructure to efficiently execute research and quality improvement projects. New approaches are necessary to make the next leap in CHD care.
To address these challenges, a group of physicians and researchers, led by Jeffrey Anderson, M.D., M.B.A., Michael Gaies, M.D., M.P.H., and Sara K. Pasquali M.D., M.H.S. teamed up to establish Cardiac Networks United. The member organizations who form this network committed to sharing data and expertise with one another to accelerate discovery and improvement in the care of patients with pediatric and congenital heart disease. Utilizing a shared infrastructure and clinical data registry powered by ArborMetrix holds great promise to improve the lives of patients and families.
“Cardiac Networks United member institutions span more than two thirds of all hospitals caring for congenital heart patients in the U.S.,” Dr. Pasquali said. “It’s allowing us to break down traditional barriers and conduct research across multiple phases of care so that we can study and improve outcomes across the lifespan for those affected by CHD.”1
The five founding organizations of Cardiac Networks United include:
- Pediatric Cardiac Critical Care Consortium (PC4)
- Pediatric Acute Care Cardiology Collaborative (PAC3)
- Cardiac Neurodevelopmental Outcome Collaborative (CNOC)
- Advanced Cardiac Therapies Improving Outcomes Network (ACTION)
- National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)
Cardiac Networks United aims to align and integrate efforts across networks in pediatric and congenital heart disease to foster novel science and accelerate translation of discovery to improvements in care. The networks measure and improve outcomes for children and families affected by pediatric and congenital cardiovascular disease, and maximize return on investment and sustainability for organizations funding and participating in research and quality improvement work.2
“The leaders of the five founding member organizations, along with parent advocates and other members of the CHD clinical and scientific communities, invested in Cardiac Networks United because we believe that the only way to keep improving for our patients and families is through collaboration,” Dr. Gaies said. “The old model tended to be very researcher-centric, and that could only move the needle so far. The members of Cardiac Networks United seek to create a new culture of discovery in the CHD community where all activities are focused on one goal: to make a difference in the lives of our patients, and to do it as rapidly as possible.“
