Research and Innovation

At Stanford Medicine Children’s Health, we continually work to improve care for children and young adults with single ventricle heart disease. Several of our doctors engage in research to better understand single ventricle heart disease and to discover new treatments that can improve your or your child’s life.

Single ventricle research studies and efforts

We welcome you/your child to participate in the following active research studies. If you are interested in a particular study, please talk with your heart doctor. Of course, participation is completely voluntary. The following research studies are enrolling new participants:

Lucile Packard Children’s Hospital Stanford’s Heart Center Biobank

Our Heart Center Biobank (a place that collects, catalogs, and stores biological samples) collects a biological sample—e.g., blood—from you/your child, and researchers study it to help answer questions about single ventricle hearts. By agreeing to share your sample anonymously, you help us learn how certain genes contribute to congenital heart disease. Understanding the genetics of these diseases can ultimately help us develop appropriate screening and diagnostic tests and develop better treatments to improve survival.

If you’d like to participate, contact the study coordinator at (650) 725-6560.

Growing heart ventricles with mechanical devices

Thanks to a joint effort between two forward-thinking research labs at Stanford Medicine—the Cardiovascular Biomechanics Computation Lab and the Cardiovascular Engineering Research Lab, we are discovering how to expand small heart ventricles with mechanical devices in children with single ventricle hearts for better future health. This groundbreaking research is testing devices in animal studies to slowly expand small heart ventricles (called hypoplastic left or right heart syndrome) to make them larger so that your child could have two working ventricles and hopefully avoid the need for a future heart transplant. The devices, one placed inside the heart and one placed outside the heart, encourage the heart to stretch and grow heart muscle over time. 

Improving heart surgery outcomes for children with single ventricle hearts

The tricuspid valve has always been challenging in Fontan circulation, and the Stanford Medicine Cardiovascular Engineering Research Lab is intersecting surgery and engineering to understand why the tricuspid valve fails and how we can fix it. Using 3-D modeling in the lab, heart surgeons/researchers re-create a child’s heart and then test different surgical approaches. The one that provides the best flow and function within the heart is then used during actual heart surgery. This innovation is leading to better surgical outcomes for children with single ventricle hearts.

The impact of Fontan circulatory failure, frailty, and resilience on heart failure and transplant outcomes study

We are participating in a large, national multicenter study, along with specialists from our Pediatric Advanced Cardiac Therapies (PACT) Program and our Pulmonary Vascular Disease Program to try to postpone the need for heart transplant in children. The study explores advanced therapies delivered at just the right time during the transplant journey. We’re evaluating how to reduce risk, how a patient’s fragility and overall state affects success, and other key factors to improve outcomes for children with Fontan heart circulation.

If you’d like to participate, contact svp@stanfordchildrens.org.

RE-ENERGIZE Fontan

Most people believe that children with single ventricle hearts shouldn’t exercise, but our physician-scientists are challenging that belief. In a real-time supervised exercise training via live video, we’re helping kids with Fontan circulation (a surgery that reroutes the blood of single ventricle hearts), ages 9 to 19, to improve their fitness from the comfort of home. Our ongoing study evaluates whether exercise can improve not just fitness but also quality of life and muscular and vascular health in children with Fontan hearts. If you or your child have undergone a Fontan procedure, we welcome you to participate in this Stanford Medicine study.

If you’d like to participate, contact FontanStudy@stanford.edu.

Chronic disease, family structures, and reproductive health

Stanford University’s obstetrics and gynecology researchers are seeking adolescents and their parents who are interested in participating in a study about chronic disease, family structures, and reproductive health. The study will involve one-on-one interviews (adolescents and parents separately) that last approximately one hour. Participants will be compensated for their time.

If you’d like to participate, contact the study coordinator at fpreasearch@stanford.edu or call (650) 721-1237.

National collaborations with other leading organizations and single ventricle heart care providers

We work with other experts across the nation to move research forward and improve care for children with single ventricle heart conditions. These include:

Fontan Outcomes Network (FON). We participate in the Fontan Outcomes Network (FON), a life-span learning network made up of a community of patients, families, clinicians, and researchers who together work to transform outcomes for all people affected by single ventricle heart disease. 

National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC). We are active in the NPC-QIC network of more than 60 pediatric cardiology care centers across the United States, Canada, and the United Kingdom. With our parent partner organization, Sisters by Heart, we work together with families, clinicians, researchers, and patients to dramatically improve outcomes for children with cardiovascular disease. Our mission is to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. Our vision is to dramatically improve the outcomes of care for children with cardiovascular disease.