Research at SSM Health Cardinal Glennon St. Louis Fetal Care Institute
At the SSM Health Cardinal Glennon St. Louis Fetal Care Institute clinical research plays an important role in what we do. Research makes it possible for us to offer your family some of the most advanced diagnostic procedures and treatments available.
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.
The Cardinal Glennon St. Louis Fetal Care Institute offers some fetal therapies that are still in the early research stage. Often these therapies help patients who otherwise have few or no options for intervention.
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 surgery before babies are born for MMC was better than surgery after birth. The goal was to enroll 200 women, but the trial was stopped early in December 2010 because there was clear evidence of the benefits of prenatal surgery.
Myelomeningocele Repair with Increased BMI
There are a number of protocols, along with inclusion and exclusion criteria, in place for fetal surgery to maximize the potential for a positive outcome. Since the start of the MOMS trial, mothers who were heavier (those with a Body Mass Index (BMI) greater than 34.9) did not meet the criteria for fetal surgery. The Cardinal Glennon St. Louis Fetal Care Institute is now conducting a study of mothers with a BMI of 35 - 40 who qualify and elect to have fetal MMC repair 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.
The Utility of MRI Scoring to Predict Neurodevelopmental Outcomes in Survivors of Twin-to-Twin Transfusion Syndrome
Treating Twin-to-Twin Transfusion Syndrome (TTTS) with fetal laser surgery has been shown to be very effective at improving the survival for one or both twins. However, TTTS is associated with a known risk of brain injury and developmental delays, particularly if only one twin survives.
The Cardinal Glennon St. Louis Fetal Care Institute, SSM Health St. Mary's Hospital - St. Louis and SSM Health Cardinal Glennon Children’s Hospital have developed a protocol to follow and monitor survivors of TTTS.