Purpose: Outcomes studies for gastroschisis are constrained by small numbers, prolonged accrual, and nonstandardized data collection. The aim of this study is to create a national pediatric surgical network and database for gastroschisis (GS) that tracks cases from diagnosis to hospital discharge.
Methods: The 16-center network serves a population of 32 million. Gastroschisis cases are ascertained at prenatal diagnosis. Perinatal data include maternal risk and fetal ultrasound variables, delivery plan and outcome, a postnatal bowel injury score, intended and actual surgical treatment, and neonatal outcomes. Institutional review board-approved data collection conforms to regional privacy legislation. Deidentified data are centralized and accessible for research through the network steering committee.
Results: To date, 114 cases of pre- and/or postnatal gastroschisis have been uploaded. Of 106 live-born infants (40 [38%] by cesarean delivery), 100 had complete records, and overall survival to discharge was 96%, with a mean survivor length of stay (LOS) of 46 days. Infants treated with attempted urgent closure (61%) had significantly shorter LOS (42 vs 57 days; P = .048) but comparable LOS compared with those treated with silos and delayed closure. Fetal bowel dilation 18 mm or greater did not predict a difference in outcome.
Conclusion: Population-based databases allow rapid case accrual and enable studies that should aid in the identification of optimal perinatal treatment.