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Congenital Diaphragmatic Hernia International Study Group and Registry

Overall worldwide survival of infants diagnosed with congenital diaphragmatic hernia (CDH) has increased from about 55 percent to close to 70 percent in the last 30 years. Unfortunately, CDH remains a challenge for physicians, surgeons and scientists. Although the defect can be corrected with sur¬gery, the arrest in prenatal development of the lungs results in unacceptably high rates of neonatal mortality and long-term complica¬tions for children born with CDH.

Thanks to more accurate prenatal diagnosis and the work of the international CDH Study Group – led by physicians affiliated with Children’s Memorial Hermann Hospital and McGovern Medical School – the global survival rate of infants born with CDH is steadily rising. Coordinated by Kevin P. Lally, MD, MS, and members from multiple specialties and centers, the CDH Study Group is a coalition of centers from around the world that track CDH patient outcomes in an international database – the CDH Registry. Based on risk-adjusted data, Children’s Memorial Hermann Hospital’s outcomes are in the top 10 percent or higher worldwide.

In the past 20 years since the CDH Study Group was founded, the voluntary collaborative has gathered data on more than 11,000 babies with CDH. The registry now represents centers in 16 countries. Information from this registry has been used in more than 50 CDH Study Group reports. These projects evaluate diagnostic and prognostic variables such as preductal oxygen saturation, defect size/anomaly association and pulmonary hypertension.

Investigators at Children’s Memorial Hermann Hospital are also engaged in promising research using extracellular vesicles, small membrane particles released from mesenchymal stem cells, to help manage pulmonary hypertension and reduce the mortality rate of CDH. While their research remains in the early stages, their aim is to translate innovative therapies to the clinical setting as quickly as possible.