The study includes patients with congenital heart disease (CHD), as well as their support persons and their providers, who are preparing to make the transition from pediatric to adult care for their CHD. The purpose of this study is to improve the tools available to help find doctors as patients enter adulthood. 200 people with CHD and support people will be enrolled.
Diagnosed CHD patients between the ages of 12-26 will be eligible
Able to provide assent when seen by a pediatric or adult congenital cardiologist provider.
A subset of patients will self-identify as having a disability, and or, be identified with disabilities in their medical or educational records.
Participants to provide assent/consent and complete all study activities in English or Spanish
Providers may decline participation of any patient at their clinical discretion
University of Wisconsin, Madison
Lead sponsor