The Current State of Prospective Registries for Congenital Craniofacial Anomalies: A Review.

Abstract

ObjectiveThis review aims to summarize existing prospective registries for congenital craniofacial anomalies across the globe.DesignWe conducted a comprehensive review of Embase and the Google Search Engine for articles which gathered data from prospective craniofacial registries and registry websites, respectively. Registry details were verified by registry coordinators where email addresses were available.SettingInstitutional or national cleft lip and/or palate (CLP) centers.Main OutcomesFor each registry, we collected coordinating and contributing centers, registry goals, years of operation, number of patients, datapoints collected, funding, and quality assurance mechanisms.ResultsNine registries were identified. Six focused on CLP, 1 on craniosynostosis, 1 on craniofacial microsomia, and 1 on a range of craniofacial abnormalities. Only European and U.S.-centered registries were identified. Every existing European CLP registry represents all government-supported cleft centers in its respective nation. The 3 U.S.-based registries are expansive, but do not capture a nationwide patient base.ConclusionsThis review characterizes the current global state of prospective registries for research on congenital craniofacial anomalies. The strength and organization of data collection varies greatly by registry and by country, though the present landscape exhibits potential for improvement of craniofacial research and patient outcomes. With this evidence, we advocate for a nationally coordinated registry to improve outcomes for children with craniofacial anomalies across the United States.