SV-ONE Bulletin Board

Project Bulletin Board

Check out these single ventricle-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

Collaborate With SV-ONE

SV-ONE has a strong interest in facilitating and empowering work that advances knowledge about single ventricle heart disease.

If your organization is interested in collaborating with us or submitting information to share on the Bulletin Board, please contact info@svone.org.