FON Bulletin Board
Project Bulletin Board
Check out these Fontan-related projects in the community! Click on the links below to learn more and see if you are eligible to participate.
Wearable Biosensors in Congenital Heart Disease: Survey Study
Main Study Question: How and why do patients, and parents/caregivers of patients, with congenital heart disease and heart rhythm problems use wearable sensors (Garmin, Fitbit, Apple Watch, Owlet,etc.)?
Summary: This is a survey to understand how wearables are used in congenital heart disease.
Description of Project: This is a survey study for us to understand: why do people with CHD use wearable biosensors? How do they interact with these technologies? What do they wish wearables did better?
Who is Eligible to Participate in the Project?
Ages 13 and up
Have congenital heart disease or a heart rhythm problem or you are a parent/caregiver of a patient who had CHD/rhythm problem as an infant
The problem must have been an active issue since 2015
Description of Participation: The study consists of a brief survey
Duration: 20 minutes
Location: Online
Responsible IRB: Cleveland Clinic
Contact Information:
Principal Investigator: Animesh (Aashoo) Tandon, MD, MSc
tandona2@ccf.org
(216) 409-6372
Date Submitted: 2/7/2024
Pictures of Health: Learning How Children Feel When Looking At Pictures Of Health and Medicine
Main Study Question: How do children and young people with congenital heart disease feel when they see pictures relating to health and medicine?
Summary: We aim to better understand the emotions of children with congenital heart disease, to better support them in the hospital.
Description of Project: Children and young people with CHD may respond differently to other children when looking at medical images. This study takes place online. Your child will be asked to look at some pictures related to health and medicine and to rate how these pictures make them feel, whether good or bad, calm or alert. There are 62 pictures to rate and it will take about 30 minutes to complete.
Who is Eligible to Participate in the Project?
(1) children and young people aged 6-17 years of age;
(2) have congenital heart disease and had cardiac surgery <1 year of age;
(3) have a parent willing to participate.
Description of Participation: Your child will be asked to rate 62 pictures online based on their emotions, and complete some short questions about themselves (with your assistance if needed).
Duration: 30 minutes
Location: Online
Responsible IRB: Sydney Children's Hospitals Network
Contact Information:
Nadine Kasparian (PI)
Nadine.Kasparian@cchmc.org (Study Email)
513-636-5575 (Study Phone)
Date Submitted: 4/16/2023
Randomized Exercise Intervention Designed To Maximize Fitness In Pediatric Fontan Patients (Re-Energize Fontan)
Main Study Question: What is the impact of an exercise intervention delivered via Zoom in children and adolescents with Fontan circulation?
Summary: The aim of this study is to evaluate if a live-video-supervised exercise intervention can improve cardiac and physical capacity, endothelial function, and muscle mass and function in children and adolescents with Fontan circulation.
Description of Project: This is an exercise program for children and adolescents who have undergone Fontan operation and fit the inclusion criteria. Participants are requested to attend 3-4 study visits at Lucille Packard Children's Hospital for a comprehensive assessment at Stanford. All participants will get to exercise with a certified trainer via Zoom. Participants will receive a tablet and Fitbit as part of the exercise intervention, as well as a $150 Amazon gift card for each study visit.
Who is Eligible to Participate in the Project?
(1) 9 to 19 years old;
(2) Fontan circulation;
(3) Do not have a pacemaker;
(4) Cleared to exercise by their primary cardiologist.
Description of Participation: Participants will initially be enrolled in the usual care or exercise intervention arm, but by the end of the study, everyone will get to exercise! All participants will get a tablet, a Fitbit, and an exercise kit (medicine ball, foam roller, sliders, and resistance bands) when they start the exercise phase and will keep these items for personal use after the end of the study.
Duration: Participants will be in the study for 9-12 months.
Location: The study involves 3-4 in-person study visits at Lucile Packard Children's Hospital Stanford. The live-video-supervised exercise sessions are via Zoom.
Responsible IRB: Stanford IRB
Contact Information:
Seda Tierney (PI)
fontanstudy@stanford.edu (Study Email)
650-334-7156 (Study Phone)
Date Submitted: 10/12/2022
Emerging Adult and Parent Contributions to Dyadic Management of Congenital Heart Disease
Main Study Questions:
1. What are the experiences of emerging adults and their parents in managing CHD?
2. How do emerging adults and their parents manage CHD together?
Summary: The aim of the study is to better understand the experience of managing congenital heart disease from the perspectives of both emerging adults and their parents.
Description of Project: Research focused on emerging adults (ages 18-29 years) has focused on the transition from pediatric to adult clinics, and mostly looks from the parental perspective. Teams lack the information needed to consider how emerging adults and their parents manage CHD together. This 30-minute survey study will allow you and your parent to share separately your experience of how you have managed CHD in the context of your life. The survey includes several short questions related to diagnosis management, monitoring, and maintenance.
Who is Eligible to Participate in the Project?
(1) 18-29 years of age;
(2) have congenital heart disease and had cardiac surgery <1 year of age;
(3) in active cardiology specialist care;
(4) not currently hospitalized;
(5) have a parent willing to participate
Description of Participation: The emerging adult and one parent will each individually complete a 30-minute online survey separately.
Duration: One-time survey and open-ended question, with the option to consent and provide contact information for future research.
Location: Not center based.
Responsible IRB: Boston College IRB
Contact Information:
Amy Delaney (PI)
delaneam@bc.edu (Study Email)
617-990-7618 (Study Phone)
Date Submitted: 11/15/2022
Collaborate With FON
The Fontan Outcomes Network (FON) has a strong interest in facilitating and empowering work that advances knowledge about single ventricle heart disease and the Fontan circulation.
If your organization is interested in collaborating with FON on a Fontan-related project, please complete this application.