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  Background

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 birth defects requiring major surgery consume disproportionate health care resources. Gastroschisis (GS) and congenital diaphragmatic hernia (CDH) are among the most important birth defects requiring surgery due to their relative frequency (compared with other birth defects), morbidity and mortality, and resource intensive, multidisciplinary care needs.


However, since the number of cases of GS and CDH treated by single centres is small, and because therapeutic opinion varies from centre to centre, traditional "evidence" upon which decisions for care of these patients is made has been based on single or combined institutional case reports. It is therefore not surprising that there is a distinct lack of therapeutic consensus for what constitutes "best" multi­disciplinary care for these infants. This lack of consensus extends from prenatal diagnosis to postnatal treatment and is compounded by the lack of validated, diagnosis-specific, illness severity instruments for risk adjustment. Furthermore, the reporting of birth defect prevalence is inaccurate because of exclusion of terminated pregnancies and stillbirths. Thus, there is an urgent need for research to evaluate this knowledge gap and address questions that have been thus far unanswerable by traditional reporting from single institutions.

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