The Canadian Pediatric Surgery Network (CAPSNet): Establishing Best Practices for Gastroschisis and Congenital Diaphragmatic Hernia

Birth defects are the most common cause of infant mortality in industrialized nations. In addition, among infants admitted to neonatal intensive care units, those with major birth defects consume a disproportionate share of neonatal health care resources. Gastroschisis (~1 per 2000 live births) and congenital diaphragmatic hernia (~1 per 2500 live births) are the two most common structural birth defects treated by pediatric general surgeons. These babies, who routinely require NICU admission and complex multidisciplinary care (including major surgery) face a significant risk of dying, and even among survivors, there are a substantial number who suffer chronic disabilities leading to personal, family and societal burden. There is little doubt that opportunities to improve the care and outcome of these babies exist. Yet given the small numbers of cases seen within single institutions, there is an urgent need to study gastroschisis and congenital diaphragmatic hernia on a national level, so that existing knowledge gaps can be closed. The use of disease-specific national datasets like that of the Canadian Pediatric Surgery Network (CAPSNet) to define national disease burden and short and long term outcomes associated with specific treatments will create the medical evidence necessary to inform future optimal care. Translation of knowledge into clinical practice will improve health services delivery to affected populations, and create a model by which other birth defects could be studied.