A Cincinnati Children’s Hospital Medical Center (CCHMC) doctor is leading a new learning health network that will assess long-term complications of a procedure for people born with a variety of heart defects congenital.
Alexander “Sasha” Opotowsky, MD, director of the adult congenital heart disease program at CCHMC, has been named co-executive director of the Fontan Outcomes Network, which serves a broad community of families, physicians, and researchers working to improve the quality of lives of people with Fontan circulations.
Typically used for children born with hypoplastic left heart syndrome, the Fontan procedure – really a series of procedures – is palliative surgery that diverts blood flow in the heart so that it reaches the pulmonary arteries without passing through the right ventricle. Once the procedure is complete, blood flows through the lungs without having to pump through the heart.
Today, more than 70,000 people with a single-ventricular congenital heart defect live with Fontan’s circulation. But patients also live with the long-lasting complications of the procedure, which was developed in the late 1960s. The surgeries have been refined in recent years, but there are still many doctors who are unaware of life after the Fontan procedure. .
“[Patients] live a good life most of the time,” says Opotowsky. “But they also live with a lot of uncertainty.”
Opotowsky, who typically works with adult patients, says people living with Fontan’s circulation tend to suffer a heavy burden of premature complications. During the second, third and fourth decades of life, patients have a high risk of developing cardiac complications, such as arrhythmia or heart failure, and even non-cardiac complications, such as liver cancer and cirrhosis.
“They also tend to have complications that aren’t well understood, and which we certainly don’t deeply understand, both biologically but also therapeutically,” he says. . “Any provider who cares for people with congenital heart disease…has a tangible feeling that we are not serving these patients as well as we would like. And there is a real pressing sense of obligation and desire to improve this state of affairs. This is where the Fontan Outcomes Network (FON) comes in.
FON is just one of twelve similar networks housed within CCHMC’s James M. Anderson Center. Dubbed a “Lifelong Learning Health Network”, FON is working across 12 healthcare centers – CCHMC included – to create a registry that will track patients throughout their lives, using data and research to answer questions and help provide a roadmap for improving longevity and quality of life.
The network’s goals are ambitious: in its first three years, FON hopes to engage 50 care centers and enroll 10,000 patients in its HIPAA-compliant data registry to better understand the bigger picture and identify opportunities for improving care.
“It will be of enormous value and will have the potential to really transform our understanding of this circulation,” says Opotowsky. “The Children’s has developed this expertise in health network learning that, both in cardiology and other fields, has advanced care for many complex diseases. It’s really unbelievable. He really was a pioneer here.
Alexander Opotowsky, MD
Cardiologist, Cincinnati Children’s Hospital Medical Center
Director, Adult Congenital Heart Disease Program