The Fetal Center at Riley Children’s Health is supporting the creation of a registry for complicated monochorionic twin pregnancies, which represent less than one-third of all twin pregnancies. The registry will gather data from specialized high-risk pregnancy centers with the goal of improving care for these pregnancies.
Twin pregnancy comprises 2% of all pregnancies with monochorionic twin pregnancy representing less than one-third of all twin pregnancies. Given the rare incidence of these pregnancies and their complications, systematic studies of the natural history, outcomes of the pregnancies, and the benefits of fetal interventions is minimal.
Led by Hiba J. Mustafa, MD, director of fetal surgery, the Fetal Center at Riley Children’s Health is compiling data to support a complicated monochorionic twin pregnancy registry. The registry, designed by doctors specializing in maternal-fetal medicine, neonatology and pediatric surgery, is endorsed by The North American Fetal Therapy Network.
“The goal of this registry is to provide the opportunity for an international collaboration of specialized high-risk pregnancy centers to compile data and experiences with monochorionic twin pregnancies to provide a more robust and systematic evaluation of the care of these pregnancies,” said Dr. Hiba J. Mustafa.
Individuals who are 18 years or older and receiving evaluation and treatment for complicated monochorionic pregnancy at the Fetal Center can participate in the study by consenting to share their medical records. Diagnoses that qualify as complicated monochorionic pregnancy include but are not limited to twin-to-twin transfusion syndrome (TTTS), twin reversed arterial perfusion (TRAP), twin anemia polycythemia sequence (TAPS), selective intrauterine growth restriction (IUGR), monoamniotic pregnancy, discordant anomalies, and conjoined twin pregnancy. Enrolled patients can leave the GOOD study at any time, for any reason.
Physicians and eligible patients can contact Rachel Tullar, clinical research coordinator, at rtullar@iu.edu to learn more or enroll in the study. As a leader in the care for high-risk pregnancies, the Fetal Center also has other innovative research and discovery projects ongoing.