A multi-center study of primary heart muscle disease of the unborn baby
Fetal cardiomyopathy (FCM) is a rare, condition affecting the heart muscle of unborn babies with 6 subtypes and a spectrum of causes. FCM is associated with a high risk of the baby dying before or soon after birth. Previous studies on FCM have been limited in scope, looking at only a small number of cases over a long time. This has made it challenging to thoroughly understand the differences in what causes FCM and what outcomes each subtype might have, especially with modern testing and management methods. Our objective is to examine differences in causes and outcomes of FCM subtypes. We will conduct the largest-ever study on FCM where we will gather and review data on >200 FCM cases recently diagnosed by >30 fetal cardiology centers across the world. Leading this study are co-supervisors Drs. McBrien and Hornberger, working in collaboration with the Fetal Heart Society. We will analyze clinical data uploaded by participating centers. We expect that through this study, we will improve accuracy of prenatal counseling, including outcome prediction, and may identify ways to improve management and outcomes of FCM-affected pregnancies.