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Congenital Diaphragmatic Hernia International Study Group and Registry

Overall worldwide survival of infants born with diaphragmatic hernia has increased from about 55 percent to close to 70 percent in the last 20 years. Unfortunately, congenital diaphragmatic hernia (CDH) remains a challenge for physicians, surgeons and scientists. Although the defect can be corrected with surgery, the arrest in prenatal development of the lungs results in unacceptably high rates of neonatal mortality and long-term complications for children born with CDH.

Physicians at Children’s Memorial Hermann Hospital and the division of General and Thoracic Pediatric Surgery at McGovern Medical School are internationally recognized leaders in providing state-of-the-art fetal care, neonatal critical care and minimally invasive surgical repair of CDH. The care they provide is based on data collected and new insights gained through the international Congenital Diaphragmatic Hernia Study Group and the CDH Registry, which reside at the hospital and medical school.

In the 20 years that have passed since the CDH Study Group was founded, the voluntary collaborative has gathered data on more than 9,500 babies with diaphragmatic hernia. The registry now represents centers in 14 countries. Information from this registry has been used in more than 40 CDH Study Group reports. These projects evaluated diagnostic and prognostic variables such as preductal oxygen saturation, defect size/anomaly association and pulmonary hypertension.