Lurie Children’s Joins Top Pediatric Centers in New Network to Transform Outcomes of Single Ventricle Heart Disease

Ann & Robert H. Lurie Children’s Hospital of Chicago is among 12 of the top pediatric centers from across the country to launch the Fontan Outcomes Network (FON), a new lifespan learning health network created by and for a community of patients, families, clinicians, and researchers who together seek to transform outcomes for all people affected by single ventricle congenital heart disease.

Single ventricle congenital heart disease refers to a wide range of cardiac defects where only one of the heart’s two ventricles is of adequate function. Because of this, patients undergo staged surgeries to ultimately reach a “Fontan circulation,” where the heart is reconstructed to allow the remaining functional chamber to be used to pump blood out to the body.

Due to extraordinary advances in treatment in the past 50 years, currently around 70,000 individuals with single ventricle congenital heart defects are living with a Fontan circulation. Care for these individuals, however, varies from one site to another and a collaborative approach is needed to improve care overall.

Dr. Kiona Allen, a pediatric cardiac intensivist and Medical Director of the Single Ventricle Center of Excellence within the Regenstein Cardiac Care Unit at Lurie Children’s, says that while her center has a comprehensive single ventricle program, she is excited at the prospect of bringing together patients, parents, providers, and researchers for this common purpose.

“There is so much we can learn from one another,” says Dr. Allen, also the Interim Medical Director of the Regenstein Cardiac Care Unit and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “The collaborative work we will be able to do as a network is going to transform our field and the lives of our patients.”

FON, as a learning health network, has the power to connect and coordinate patients, families, clinicians, and researchers and harness quality improvement science and a longitudinal data registry to enable rapid discovery, translation of research into clinical practice, and improvement in outcomes for children, teens, and adults living with Fontan circulation.

In addition to Lurie Children’s, FON’s initial pilot care centers include: Boston Children's Hospital, Children's Hospital Colorado, Children’s Hospital Los Angeles, Children's Hospital of Philadelphia, Children's National Hospital, Children's Wisconsin, Cincinnati Children's Hospital, Lucile Packard Children’s Hospital, Mayo Clinic Children’s Center, Texas Children's Hospital, and University of Michigan C.S. Mott Children’s Hospital.

The network plans to invite additional care centers after its first year and has set the ambitious goals of engaging 50 care centers and enrolling 10,000 patients in its first three years.

FON is based on a framework similar to that of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a learning health network that has documented improved health outcomes including sustained decreased mortality and better growth in infants with hypoplastic left heart syndrome, one type of single ventricle heart disease.

FON will focus on improving physical health and functioning, neurodevelopment, and emotional health and resilience. To achieve this, FON is working to:

• Build a community of patients, families, clinicians, and scientists
• Develop and support a robust registry of clinical data for learning and improvement, and to map the clinical trajectory of individuals with single ventricle heart disease
• Provide a rich foundation of clinical phenotypic data to enhance the value of associated biological data
• Apply quality improvement science and a collaborative learning platform
• Conduct investigation, exploratory research, and clinical trials
• Partner with diverse stakeholders to augment the impact of the network

More information on FON, is available at https://www.fontanoutcomesnetwork.org/.

Ann & Robert H. Lurie Children’s Hospital of Chicago is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. It is the pediatric training ground for Northwestern University Feinberg School of Medicine. Last year, the hospital served more than 220,000 children from 48 states and 49 countries.