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.
Single Ventricle SOURCE
Main Study Questions: Why do single ventricle heart defects occur? What genetic factors influence how the disease progresses? Why do some patients respond better to certain treatments?
Summary: SOURCE aims to uncover the genetic causes behind single ventricle heart disease and its associated complications and comorbidities.
Description of Project: SOURCE will collect DNA samples from people with single ventricle heart disease and their biological family members, along with information about their health and things that affect health, like place of birth.
Who is Eligible to Participate in the Project?
This study is for anyone with a single ventricle heart defect living in the U.S. (all ages and stages, from pre-Fontan to post-transplant) and their immediate biological family members. That includes parents, siblings, and children.
Description of Participation: We will ask for a cheek swab sample, a brief medical history, and recent cardiac medical records for patients. Participation can take place entirely online. There is no monetary cost to participate. There is also no payment for participating.
Duration: Ongoing. The duration of the study is unknown at this time.
Location: Online: Enrollment can be completed online and all study activities can be performed from home.
Responsible IRB: Western-Copernicus Group (WCG)
Contact Information:
Principal Investigator: Kirstie Keller, PhD
kkeller@additionalventures.org
Date Submitted: 12/26/24
Michigan Transition to Adulthood Lived Experience (MiTALE) Study: Adult Congenital Heart Disease (ACHD)
Main Study Questions: What is the experience of young adults with ACHD during transition and emerging adulthood? How can we better support young adults with ACHD throughout transition?
Summary: MiTALE aims to examine young adult perspectives on emerging adulthood using a novel, online community platform.
Description: MiTALE hopes to learn more about the young adult experience living with ACHD and how we can best support transition. Participation in the study is entirely virtual. Young adults will be asked to complete one-time online surveys and then respond to weekly prompts on a secure, private, online forum for 2 months. All responses are anonymous, and participants will be able to see and respond to others' forum responses.
Duration of Participation: After completing virtual kick-off call, two months participating in weekly online forum.
Location: Online; Enrollment can be completed online and all study activities can be performed from home.
Responsible IRB: University of Michigan; Michigan Medicine
Contact Information:
Primary Contact: Kelly Rea, PhD
um-mitale@med.umich.edu
(734) 936-4220
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 contact info@fontanoutcomesnetwork.org.