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The Craniofacial Collaboration UK: Developmental Outcomes in 7- and 10-Year-Old Children With Sagittal Synostosis
Samuel Lloyd-White1, Rosanna Samuel1, Laura Edwards-Bailey2
1Oxford Craniofacial Unit, Oxford University Hospitals NHS Foundation Trust, UK.
Insights
Children with single suture craniosynostosis (SSC) generally show average neurodevelopmental outcomes. A small risk of subtle perceptual reasoning difficulties was noted in children with nonsyndromic sagittal synostosis (SS).
Area of Science:
- Pediatric neurodevelopment
- Craniofacial surgery outcomes
- Child psychology
Background:
- The Craniofacial Collaboration UK (CC-UK) protocol standardizes neurodevelopmental and psychosocial screening for children with craniosynostosis.
- Existing research on single suture craniosynostosis (SSC) outcomes is limited by sample homogeneity.
- This study analyzes CC-UK data to assess behavioral, cognitive, and psychosocial outcomes in children with nonsyndromic sagittal synostosis (SS).
Purpose of the Study:
- To evaluate the neurodevelopmental and psychosocial outcomes of children with nonsyndromic sagittal synostosis (SS) aged 7 and 10 years.
- To identify any specific cognitive or behavioral risks associated with SS.
- To contribute to understanding the psychological phenotype of SS for parents and clinicians.
Main Methods:
- Analysis of data from the Craniofacial Collaboration UK (CC-UK) registry.
- Inclusion of 7- and 10-year-old children with nonsyndromic sagittal synostosis (SS) who underwent primary corrective surgery.
- Data collection from 3 Highly Specialist Craniofacial Centres (HSCCs) to maintain sample homogeneity.
Main Results:
- Most children with SS demonstrated average performance across behavioral and neurodevelopmental domains.
- A small, statistically insignificant difference was observed in perceptual reasoning and visuomotor skills (Block Design).
- No consistent evidence of significantly increased risk for poorer outcomes in other assessed domains was found.
Conclusions:
- Children with nonsyndromic sagittal synostosis (SS) typically fall within average neurodevelopmental ranges.
- Subtle difficulties in perceptual reasoning may represent a specific risk for children with SS.
- Further research into the psychological phenotype of SS is warranted.
Abstract:
The Craniofacial Collaboration UK (CC-UK) protocol is a shared agreement across the 4 UK Highly Specialist Craniofacial Centres (HSCCs) to conduct robust neurodevelopmental and psychosocial clinical screening for children with craniosynostosis. This agreement allows for the analysis of outcomes of a homogenous sample of children with single suture craniosynostosis (SSC), a frequent limitation of the existing research. The current study is the latest analysis of CC-UK data on behavioral, cognitive, and psychosocial outcomes. The focus of this analysis is 7- and 10-year-olds with nonsyndromic sagittal synostosis (SS) who have undergone primary corrective surgery and completed routine clinical screening at 1 of the 4 HSCCs since the introduction of the CC-UK protocol. Due to changes in clinical pathways, only data from 3 HSCCs is included to preserve homogeneity. Results show that the majority of children with SS fall within the average range across behavioral and neurodevelopmental domains. A notable exception was a task involving perceptual reasoning and visuomotor skills (Block Design). Although this difference was small and the mean score remained within the average range, it suggests some increased risk of subtle difficulty with such skills for children with SS. Across other measures, there was no consistent evidence of any significantly increased risk of poorer outcomes, in line with findings of previous CC-UK papers. Understanding the psychological phenotype of SS is a key research priority for parents and clinicians, and the current study is another step toward achieving this goal.
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