Elin Weissbach
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View article: The Development of a European Registry for Facial Dysostosis Syndromes: A Delphi-Guided Approach
The Development of a European Registry for Facial Dysostosis Syndromes: A Delphi-Guided Approach Open
Facial dysostosis syndromes (FDS) are rare congenital conditions that significantly impact facial function and appearance. At the time of this writing, standardised monitoring protocols for FDS are lacking, hampering research, and evidence…
View article: What Matters to Patients With Nonsyndromic Craniosynostosis and Their Parents: A Qualitative Study Informing the Development of a Patient-Reported Outcome Measures Set
What Matters to Patients With Nonsyndromic Craniosynostosis and Their Parents: A Qualitative Study Informing the Development of a Patient-Reported Outcome Measures Set Open
The primary objective of this study was to identify important concepts that hold significance for both patients with nonsyndromic craniosynostosis and their parents regarding their craniosynostosis care. The findings from this study will g…
View article: Comparing effectiveness of conservative policy to craniofacial surgery in children with metopic synostosis: protocol for an observational cohort study on clinical outcomes, psychosocial well-being and costs in a Dutch academic hospital
Comparing effectiveness of conservative policy to craniofacial surgery in children with metopic synostosis: protocol for an observational cohort study on clinical outcomes, psychosocial well-being and costs in a Dutch academic hospital Open
Introduction Traditionally, surgical intervention has been the standard treatment for children with metopic synostosis, assuming that it reduces the risk of raised intracranial pressure, thereby preventing vision and cognitive impairment, …