The Congenital Diaphragmatic Hernia Study Group registry update

Abstract

The Congenital Diaphragmatic Hernia Study Group (CDHSG) is an international consortium of centers that prospectively collect and voluntarily contribute data about live-born CDH patients they manage. These data are compiled to form a registry from which any participating center may utilize the dataset to answer specific clinical questions and monitor outcomes. Since its inception in 1995, 112 centers have participated (including 66 centers from 13 countries currently active), data on more than eight thousand total children have been collected, and 35 manuscripts have been generated using registry data. This review covers the formation and structure of the CDH study group and registry, including function, center involvement, and the evolution of data collection. We also review reports generated by the CDHSG, with particular focus on the work after 2008. International multicenter consortiums, such as the CDHSG, allow physicians that manage uncommon, complex, heterogeneous diseases to develop evidence-based hypotheses and conclusions for clinical questions.

Keywords: CDH study group; Congenital diaphragmatic hernia; Diaphragmatic defect; Extracorporeal membrane oxygenation; Outcomes; Prenatal diagnosis; Registry.