Understanding heart disease progression in children with MYBPC3 gene mutations

This study is collecting information from children and young adults (under 18 years old) who have a heart condition caused by changes in the MYBPC3 gene. Researchers want to understand how this genetic heart disease develops, what symptoms and challenges patients face, and how it affects quality of life. By gathering this information from both past medical records and ongoing follow-up, scientists hope to learn more about the natural course of this condition to help improve care in the future.

Right now, doctors don't have a complete picture of how MYBPC3-related heart disease progresses in children or what factors make it more or less serious. This study exists to fill that gap by collecting detailed information that can help doctors better predict outcomes, identify which patients are at highest risk, and eventually develop better treatments.