International Fetal Cardiac Intervention Registry
— October 8, 2014
Congenital heart disease represents one of the most common types of birth defects, occurring in approximately 6 of every 1000 live born babies. It is the No. 1 cause of infant death due to birth defects in most Western countries. Apart from the burden for the child and the family, the financial burden for health care and society is high. In the US costs associated with congenital heart disease are estimated at over $1.4 billion per year (source: http://www.cdc.gov/features/heartdefects/).
Through advances in education and ultrasound technology, it is growing increasingly more common to have heart disease detected before birth. In some fetuses, intervention for the defect before birth might lead to better outcome later in life. Such fetal cardiac interventions are only performed in a few specialized centers throughout the world. These centers have joined forces to help each other evaluate and improve these still rare, complex, and innovative procedures.
The aim of IFCIR, the International Fetal Cardiac Intervention Registry, is to improve the care and outcome for mothers and babies when the pregnancy is complicated by congenital heart disease in the fetus. Specifically, through this website we share our experiences, protocols, technical aspects and outcome data for fetal patients with congenital heart disease potentially amenable to intervention before birth.
Anita J Moon-Grady, MD, FAAP, FACC, FASE
University of San Francisco
San Francisco, CA, U.S.A.
Dick Oepkes, MD, PhD
Department of Obstetrics
Leiden University Medical Center
Leiden, The Netherlands