19 Hospitals From Across the U.S. and Canada Join the Fontan Outcomes Network
Launched in June 2021, the Fontan Outcomes Network (FON) now comprises 31 care centers who work together in a shared vision to improve outcomes and quality of life for all individuals with single ventricle heart disease and Fontan circulation.
CINCINNATI, Ohio — Nineteen hospitals from across the U.S. and Canada have joined the 12 founding care centers of the Fontan Outcomes Network (FON), a lifespan learning health network dedicated to transforming outcomes for all people affected by single ventricle heart disease.
“As the mom of a 27-year-old son with a single ventricle congenital heart defect, I live with the challenges and the unknowns of his disease every day. While we have dramatically improved survival for single ventricle patients, we have not significantly moved the needle on reducing co-morbidities and improving quality of life.”
Due to extraordinary advances in treatment in the past 50 years, approximately 70,000 individuals with single ventricle congenital heart defects from around the world now live with a Fontan circulation (a palliative surgery for patients with one functioning ventricle). Care for these individuals, however, varies greatly from one hospital to another and there remain many unknowns about their long-term outcomes.
“As the mom of a 27-year-old son with a single ventricle congenital heart defect, I live with the challenges and the unknowns of his disease every day,” says Diane Pickles, a parent director of FON. “While we have dramatically improved survival for single ventricle patients, we have not significantly moved the needle on reducing co-morbidities and improving quality of life.”
FON is a lifespan learning health network created by and for patients, families, clinicians, and researchers. As such, the network has the power to connect and coordinate its many constituents to harness quality improvement science and a longitudinal data registry to enable:
rapid discovery,
translation of research into clinical practice,
transformative improvement in outcomes for children, teens, and adults with Fontan circulation.
These 19 hospitals join FON’s 12 founding care centers who launched the network in June 2021. This initial expansion of FON is a critical step in the network’s ambitious goals of engaging 50 care centers and enrolling 10,000 patients within three years of initial enrollment.
“I am personally so grateful to the centers making this commitment,” Pickles says, “which I am confident will improve the lives of those living with single ventricle heart disease.”
The new FON care centers include*:
Advocate Children’s Hospital
Arkansas Children’s Hospital
Children’s Health Dallas
Children’s Healthcare of Atlanta
Children’s Hospital at Montefiore
Dell Children’s Medical Center / University of Texas Dell Medical School
Duke University Medical Center
Johns Hopkins All Children’s Hospital
Monroe Carell Jr. Children's Hospital at Vanderbilt in collaboration with Vanderbilt University Medical Center
Nationwide Children’s Hospital
Rady Children’s Hospital San Diego & UC San Diego Health
Stollery Children’s Hospital
UC Davis Children’s Hospital
University of Iowa Stead Family Children’s Hospital
University of Minnesota Masonic Children’s Hospital
University of Utah/Primary Children’s Hospital
UPMC Children’s Hospital of Pittsburgh
“By joining FON, these care centers are showing their commitment to the care of patients and their families,” says Dr. Tom Glenn, an individual with single-ventricle physiology and a patient director of FON. “As a patient who receives care at one of these centers, this means a great deal.”
FON accepts additional care centers on an annual basis. The network will open applications for a new wave of care centers in the spring of 2023.
FON’s 12 founding care centers include: Ann & Robert H. Lurie Children's Hospital of Chicago, 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 Stanford, Mayo Clinic Children’s Center, Texas Children's Hospital, and University of Michigan C.S. Mott Children’s Hospital.
The network is led by an executive leadership team, four work groups, a strategic advisory committee, and project staff. Click here to learn more about the FON team.
Financial support to launch FON has been generously provided by Additional Ventures and the Congenital Heart Alliance of Cincinnati.
For more information on FON, please explore our website or contact us.
*Two additional care centers whose names will be shared once contracts are finalized.