Copyright © 2018 Mutaz B. Habal, MD. Unauthorized reproduction of this article is prohibited. Introduction to the Craniofacial Collaboration UK: A Developmental Screening Protocol at the United Kingdom’s Four Highly Specialized Craniofacial Centers Helen Care, D.Clin.Psych,  Jo Horton, QiCN (Paed), D.Clin.Psych, y Anna Kearney, D.Clin.Psych, z Patrick Kennedy-Williams, D.Clin.Psych,  Maria Knapp, D.Clin.Psych, § Natasha Rooney, D.Clin.Psych, jj Siaˆn Thomas, D.Clin.Psych,  Martin Evans, FRCS (OMFS), FDSRCS (Ed), y Greg James, PhD, FRCS (SN), jj David Johnson, DM, FRCS (Plast),  Chris Parks, MBBS, FRCS (SN), z Steven Wall, FRCS, FCS (SA), plast,  and Louise Dalton, D.Clin.Psych  Abstract: The clinical psychologists at the 4 highly specialized craniofacial centers in the United Kingdom have developed a systematic, developmental screening protocol, called the Craniofa- cial Collaboration UK (CC-UK). Previous systematic reviews of the literature into the developmental sequelae of single-suture cranio- synostosis have identified a number of methodological flaws which the CC-UK seeks to avoid. This study presents an introduction to the rationale for its development, as well as the methodology of the CC-UK. Key Words: Craniofacial, developmental protocol, developmental screening (J Craniofac Surg 2019;30: 83–86) A s clinical psychologists attached to the 4 highly specialized craniofacial centers (HSCCs), the most frequent question we get asked by families of children with craniosynstosis is ‘‘What does this mean for my child’s future?’’ Families want to know what the developmental implications are, in terms of intellectual and physi- cal development, but also social adjustment and behavior. The United Kingdom-based charity, Headlines, which offers support to patients with craniosynostosis and their families, undertook a survey to draw up the top 10 patient priority research projects into craniosynostosis. The long-term effects of synostosis on both physical and psychological development were ranked as the first priority. 1 The expectation for the vast majority of children with single-suture craniosynostosis (SSC) is that they will only require 1 surgical procedure to correct the physical aspects of the synostosis itself 2 but the questions regarding the developmental sequelae remain. This study will outline how clinical psychologists are seeking to answer this question for families, through the use of a clinically driven, systematic, developmental screening protocol. Recent comprehensive systematic reviews of the literature relating to this question 3–6 have highlighted a number of important methodological limitations in research to date. These reviews have concluded that the majority of children with SSC fall within the average range on measures of general intelligence, but as a popu- lation, they are at higher risk of experiencing a variety of develop- mental and cognitive deficits. The mechanism resulting in this increased risk remains unclear, and there are a variety of different cognitive domains highlighted as areas of difficulty (eg, language, 7 memory, 7 visuospatial skills, 8 attention 4 ). The systematic reviews concluded that the majority of the small number of good quality studies indicate that there is an overall reduction in cognition and motor skills in the SSC population prior to surgery in comparison to normative population estimates, and that some of these cognitive deficits or reductions may remain following surgical intervention. Review studies note that the data on school-aged children are more limited but suggest that difficulties may persist. Feragen and Stock 6 consider a range of areas of psychological concern and functioning in children with craniofacial conditions, and highlight mixed find- ings, but suggest the majority of children with SSC achieved scores that were comparable to norms or control groups. They note that there is a dearth of studies that look at psychosocial and behavioral outcomes; however, they conclude that the limited evidence that is available suggests the majority of children with SSC are performing broadly in-line with their peers. FLAWS IN EXISTING LITERATURE The existing literature and systematic reviews have consistently highlighted the methodological limitations of much research to date: small sample sizes; nonstandardized ages at assessment; poor or lacking exclusion/inclusion criteria; sample biases; heterogeneity of diagnosis, with no account of genetic mutations which may influence phenotypic characteristics; focus on developmental/cog- nitive outcomes to the exclusion of other psychological outcomes. The current study aims to show how the HSCCs in the United Kingdom have taken up this challenge, and have created a system- atic, collaborative approach to collecting large samples of repre- sentative data for patients with SSC: the ‘‘Craniofacial Collaboration UK.’’ From the  Oxford Craniofacial Unit, Oxford Children’s Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford; y Birmingham Children’s Hospital Craniofacial Unit, Birmingham Women’s and Chil- dren’s Hospital, Birmingham; z Alder Hey Craniofacial Unit, Alder Hey Children’s NHS Foundation Trust, Liverpool; § Inside Out Psychology, In Motion Clinic, Chester, Cheshire; and jj Great Ormond Street Hospital for Children Craniofacial Unit, Great Ormond Street NHS Foundation Trust, London, UK. Received May 8, 2018. Accepted for publication June 13, 2018. Address correspondence and reprint requests to Helen Care, D.Clin.Psych, Clinical Psychologist, Oxford Craniofacial Unit, Level LG1 West Wing, John Radcliffe Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 9DU, UK; E-mail: Helen.care@ouh.nhs.uk The authors report no conflicts of interest. Copyright # 2018 by Mutaz B. Habal, MD ISSN: 1049-2275 DOI: 10.1097/SCS.0000000000004846 ORIGINAL ARTICLE The Journal of Craniofacial Surgery  Volume 30, Number 1, January 2019 83