The SLOW HEART REGISTRY is a multi-centered prospective observational study that will address the knowledge gap to guide future management of high-degree immune-mediated heart block to the best of care. The study seeks to establish an international database of the management and outcome of affected fetuses, to be used to publish information on the results of currently available prenatal care and to evaluate the need for additional research.
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While many vein of Galen patients do very well with conventional treatment after birth, there remains a significant fraction who will develop severe cardiopulmonary symptoms soon after delivery, and this subgroup has a high risk of morbidity and mortality, even with expert care. An IRB and FDA-approved clinical trial of fetal brain intervention/embolization for vein of Galen malformations at Boston Children’s Hospital is now open for recruitment.
CLICK HERE to learn more about this project, or call 617-355-6512.
PI: Brian Bush
Stage: STUDY ENROLLING
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PI: Bettina Cuneo, MD
Long QT syndrome (LQTS) is the most common cause of death due to heart rhythm problems in infants, children and young adults. Before they are born, babies with LQTS can have the same heart rhythm problems as infants, children and young adults with LQTS. Treatment of LQTS can save lives.
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PI: Edgar Jaeggi, MD
Although supraventricular tachycardia (SVT), including atrial flutter (AF), are the most common causes of intended in-utero fetal therapy, none of the medication used to date has been evaluated for their effects on the mother and her baby in a randomized controlled clinical trial (RCT). In the absence of such evidence, there is no consensus for the optimal management. The Fetal Atrial Flutter and Supraventricular Tachycardia (FAST) Therapy Trial is a prospective multi-center trial that addresses this knowledge gap to guide future fetal AF & SVT therapy to the best of care.
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PI's: Anita J. Moon-Grady, MD, FAAP, FACC, FASE, Dick Oepkes, MD, PhD
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.
IFCIR represents an independent group of medical centers and healthcare professionals, endorsed by members of the leading scientific organizations of physicians working in this field.
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PI: Bettina Cuneo, MD
The purpose of the research study “Heart Sounds at Home” is for pregnant SSA positive mothers using a home Doppler fetal heart rate monitor, to detect abnormal heart rates and rhythms in their babies before they are born.
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