The Development of a European Registry for Facial Dysostosis Syndromes: A Delphi-Guided Approach

L. van Roey, Victor; Ombashi, Saranda; M.J. Mathijssen, Irene; Alberius Munkhammar, Åsa; Åsten, Pamela; Bouzariouh, Anouar; Célérier, Charlotte; Dana, Caroline; van Dooren, Marieke; Faasse, Mariët; Fauroux, Brigitte; Frykholm, Peter; Heinen, Arnoud; Heliövaara, Arja; Joosten, Koen; Kljajić, Marizela; Hallgren Larsson, Eva; E. Loudon, Sjoukje; Marinac, Ivana; Munill Ferrer, Montserrat; G. Poldermans, Henriëtte; Stattin, Eva‐Lena; Streppel, Marloes; Svensson, Malin; Thierry, Briac; T. H. Tjoa, Stephen; Topa, Alexandra; Weissbach, Elin; B. Wolvius, Eppo; Zafra Vallejo, Víctor; L. Versnel, Sarah

doi:10.1097/scs.0000000000011695

Public

The Development of a European Registry for Facial Dysostosis Syndromes: A Delphi-Guided Approach

Published in Journal of Craniofacial Surgery • Jul 22, 2025

Authors:

Victor L. van Roey

Saranda Ombashi

Irene M.J. Mathijssen

Abstract

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-based care. Thus, a comprehensive dataset was developed with...

Subject

Medicine

Delphi method

Delphi

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