The Cardinal Glennon St. Louis Fetal Care Institute participates in a variety of research programs involving pregnant women, and their babies, before and after they are born. We are also part of the North American Fetal Therapy Network (NAFTNet), which allows us to participate in collaborative research with other fetal care and surgery centers around the world. We use the data gathered from these studies to improve patient care and develop new fetal treatments.
Our research studies follow strict guidelines and procedures and have gained approval from the Saint Louis University Institutional Review Board (IRB) and SSM Health before they initiated. An IRB is a committee composed of scientists and non-scientists who serve as advocates for patients involved in research. The IRB is tasked with the responsibility of reviewing and overseeing research projects.
Participating In a Research Study
By participating in a research study you play a role in improving care for families who are in a similar situation to yours. The information learned from your participation will be used to help develop new diagnostic, treatment, and fetal care techniques.
Myelomeningocele Screening & Outcomes After Open Fetal Surgery
Myelomeningocele (MMC), one of the most severe forms of spina bifida, is a condition where a baby’s spinal cord fails to close during development. The Management of Myelomeningocele Study (MOMS) trial began in 2003. It was developed to help determine if prenatal MMC repair surgery in utero, before babies were born, was better than surgery after birth. The original goal was to enroll 200 women, but the trial was stopped early in December 2010, as there was clear evidence of the benefits of prenatal surgery.
The Cardinal Glennon St. Louis Fetal Care Institute is currently enrolling patients to voluntarily participate in the NAFTNet Myelomeningocele Screening and Outcomes after Open Fetal Surgery, a registery that was developed after the completion of the MOMS trial. The purpose of the registry is to collect information related to babies who receive prenatal MMC repair, or who are screened for fetal surgery, to monitor the effectiveness of fetal surgery.
North American Fetal Therapy Network (NAFTNet) Complicated Monochorionic Twin Pregnancy Registry
The Cardinal Glennon St. Louis Fetal Care Institute is currently enrolling patients to voluntarily participate in the NAFTNet Complicated Monochorionic Twin Pregnancy Registry. The purpose of the registry is to collect information related to complicated monochorionic twin pregnancies to help us, along with NAFTNet, monitor the effectiveness of current treatments.
International Fetal Cardiac Intervention Registry (IFCIR)
The International Fetal Cardiac Intervention Registry (IFCIR) was established to improve the quality and outcomes of health care for fetal cardiac intervention candidates. This secure registry, developed by University of California, San Francisco, stores information about pregnant mothers and their babies who have been diagnosed with certain congenital heart problems. Nearly 5,000 mothers and babies worldwide are estimated to take part in the study. The Cardinal Glennon St. Louis Fetal Care Institute is currently enrolling participants for the study.
Whole Exome Analysis of Patients with Renal Anomalies
Saint Louis University, in partnership with SSM Health Cardinal Glennon Children's Hospital and Washington University, are conducting a study to discover if certain genes increase the probability of a baby developing renal (kidney) anomalies. Learn more about the study and review enrollment information here.
Prenatal Diagnosis of Isolated Aqueductal Stenosis
The Cardinal Glennon St. Louis Fetal Care Institute is currently enrolling patients to voluntarily participate in the NAFTNet Aqueductal Stenosis study. The purpose of the study is to collect information on the ability to accurately diagnose aqueductal stenosis in the womb by ultrasound and/or MRI from other diagnoses that cause ventriculomegaly. Ventriculomegaly is a condition that causes fluid accumulation in the ventricles of the brain. This study will allow researchers to compare current practices to possible future practices of shunting the extra fluid in the brain while the baby is in the womb.
No Longer Enrolling, Preparing for Publication
The Impact of Mode of Delivery on Motor Function in Neonates with Prenatal Diagnosis of Myelomeningocele
The Cardinal Glennon St. Louis Fetal Care Institute collaborated with NAFTNet on the Impact of Mode of Delivery on Motor Function in Neonates with Prenatal Diagnosis of Myelomeningocele study. The purpose of the study was to determine the optimal mode of delivery (vaginal birth or Cesarean section) for babies with unrepaired MMC. The motor function of the infants born via each mode of delivery was compared through 24 months of age. Results of the findings from this study may lead to a future randomized control trial regarding optimal delivery mode of babies with unrepaired MMC.
Perinatal Management and Outcomes of 22q11 Deletion Syndrome
The Cardinal Glennon St. Louis Fetal Care Institute collaborated with Columbia University on a retrospective study regarding perinatal management and outcomes of 22q11 deletion syndrome (DiGeorge Syndrome). The purpose of this retrospective review was to collaborate with other fetal centers and pediatric hospitals to understand the history of prenatally diagnosed 22q11.2DS and to identify differences in management and/or outcomes between pre-and postnatally diagnosed patients through one year of age.