178. Global Registries for Congenital Craniofacial Anomalies: Where Are We Now?

PURPOSE: The management of congenital craniofacial anomalies is complicated and warrants evidence-based methods. However, research on this patient population and their surgical outcomes is hindered by small sample sizes and inconsistent study modalities. One solution is to establish large-scale, multi-center registries to research patients and outcomes, although the landscape of craniofacial registries across the globe is poorly defined. This review aims to identify and describe the current state of prospective registries for congenital craniofacial abnormalities, globally. METHODS: We conducted a comprehensive search in Embase to identify all published articles on congenital craniofacial anomalies utilizing data from multi-center registries. Distinct registries were abstracted from articles. We also used the Google Search Engine to capture additional registries not found in the Embase search. Registries were excluded if they met any of the following criteria: non-prospective design, inclusion of only population-level data, creation for non-research purposes, or insufficient available information. Results were verified with registry coordinators via email wherever possible. RESULTS: Of 812 articles screened, 77 drew data from 13 distinct registries, of which five were included. Google yielded five additional included registries. Loci of collaborating sites for cleft lip and palate (CLP) registries are mapped. CLP was the focus of seven registries (70%). There are two CLP registries in the United States, each with one international collaborating site. The two UK-based CLP registries cover the same sites but have different aims. The Netherlands, Denmark, and Sweden each have a national CLP registry. The two existing craniosynostosis registries are based in the US; one of these is comprised of data from teams of anesthesiologists. One multiple-anomaly registry exists in Europe. Seven registries in total are based in Europe (70%). Though all registries collected patient demographics, the remaining datapoints were unique to each registry. Information on quality monitoring protocols was available for six registries (60%). CONCLUSION: Our preliminary results suggest that the European effort to standardize craniofacial research is substantially more concerted than in the US. Although the existing US-based registries represent tremendous coordinative work, the adoption of a European-style national registry for pediatric craniofacial outcomes in the US could significantly improve research. There is also a notable deficit in craniofacial registries outside of North America and Europe. Although global organizations like Smile Train maintain medical record databases in the countries they serve, these are mostly for patient tracking and remain inaccessible to outside parties for research. Overall, this review is the first step in evaluating the successes of existing prospective registries, as well as the barriers that preclude the creation of registries to research craniofacial malformations in a standardized fashion at national and perhaps even global levels.