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Educational Supplement

Introduction to Updated Guideline on Treatment and Management of Craniosynostosis

Mathijssen, Irene M.J. MD, PhD

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doi: 10.1097/SCS.0000000000007301
  • Open

“Learn from the mistakes of others. You can’t live long enough to make them all yourself.”

–E. Roosevelt

New tools for diagnostics or adaptations in surgical techniques for treating patients with craniosynostosis are continuously reported in literature. Best treatment of craniosynostosis involves a multidisciplinary craniofacial team and especially integration of the care that each individual care giver can deliver. The patient's and/or parent's voice in decision making is as important. Therefore, the guideline on craniosynostosis published in this journal in 2015 needed an update. This revised guideline aims to provide healthcare professionals, and patients, and their parents/caregivers with an evidence-based overview of the optimal multidisciplinary care for craniosynostosis. It also seeks to provide recommendations for the improvement of health outcomes and the organisation of care.

The development of this guideline is an initiative from the Dutch Society for Plastic Surgery, with the support of representatives from 21 scientific societies. Important new features of the guideline are prenatal detection of craniosynostosis and speech-language development. With the financial support from the European Reference Network on Rare Craniofacial Malformations and Ear-Nose-Throat Disorder (ERN CRANIO), the translation and publication of the guideline were made possible. One of the goals of the networks is to share knowledge on rare diseases. There is no better way for sharing than through open access publications.

This guideline is primarily written for all healthcare professionals involved in the care of patients with craniosynostosis, including paediatricians, obstetricians, prenatal doctors, plastic surgeons, maxillofacial surgeons, orthodontists, otorhinolaryngologists, neurosurgeons, orthopaedic surgeons, ophthalmologists, anaesthesiologists, geneticists, psychologists, and speech and language therapists. The guideline will also provide patients and parents/caregivers with information on the recommended care for patients with craniosynostosis across multiple disciplines.

Additional information regarding the European Reference Network CRANIO can be found on www.ern-cranio.eu.

Acknowledgment

The following is the list of authors for the updated guideline on treatment and management of craniosynostosis.

The Dutch Society for Plastic and Reconstructive Surgery: Prof. Dr. Irene M.J. Mathijssen, Erasmus Universitair Medisch Centrum, Rotterdam; Dr. Sarah L. Versnel, Erasmus Universitair Medisch Centrum, Rotterdam. The National Patients and Parents Organisation for Craniofacial Anomalies, LAPOSA; Mw. Barbara Lieuwen, MSc, MA. The Dutch Institute for Psychologists and the National Society for Medical Psychology: Dr. Jolanda M.E. Okkerse, Erasmus Universitair Medisch Centrum, Rotterdam; Drs. Jolanda J. Reuser, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Ophthalmologic Society: Dr. Sjoukje E. Loudon, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Anaesthesiology: Drs. Antonia Gonzalez Candel, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Otolaryngology: Dr. Marc P. van der Schroeff, Erasmus Universitair Medisch Centrum, Rotterdam; Drs. Jet H.H.W. de Gier, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Paediatrics: Prof. Dr. Koen F.M. Joosten, Erasmus Universitair Medisch Centrum, Rotterdam; Dr. Natalja Bannink, Franciscus Gasthuis & Vlietland, Rotterdam en Schiedam; Drs. Louis G.F.M. van ’t Hek, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Oral and Maxillofacial Surgery: Prof. Dr. Eppo B. Wolvius, Erasmus Universitair Medisch Centrum, Rotterdam; Dr. Wilfred A. Borstlap, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Neurosurgery: Dr. Marie-Lise C. van Veelen, Erasmus Universitair Medisch Centrum, Rotterdam; Dr. Hans H.K. Delye, Radboud Universitair Medisch Centrum, Nijmegen. Society for Clinical Genetics The Netherlands: Dr. Marieke F. van Dooren, Erasmus Universitair Medisch Centrum, Rotterdam. Society for Clinical Genetics Laboratory Diagnostics: Dr. Rolph Pfundt, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Speech and Language Therapy: Dr. Marie-Christine J.P. Franken, Erasmus Universitair Medisch Centrum, Rotterdam; Mw. Eveline Kerkhofs, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Obstetrics & Gynaecology: Dr. Titia E. Cohen-Overbeek, Erasmus Universitair Medisch Centrum, Rotterdam; Drs. Mallory Woiski, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Orthodontists: Dr Stephen T.H. Tjoa, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Radiology: Drs. Marjolein H.G. Dremmen, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Relationship Counseling and Family Therapy: Mw. Francien Meertens, Erasmus Universitair Medisch Centrum, Rotterdam. Royal Dutch Society for Physiotherapy and The Dutch Society for Physiotherapy in Paediatric and Youth Health Care: Dr. Leo A. van Vlimmeren, Radboud Universitair Medisch Centrum, Nijmegen. The Dutch Society for Psychiatry: Drs. Monique H.M. van Lier, Erasmus Universitair Medisch Centrum, Rotterdam. The Dutch Society for Neurology and The Dutch Society for Paediatric Neurology: Prof. Dr. Michel A.A.P. Willemsen, Radboud Universitair Medisch Centrum, Nijmegen.

With the support of: Barbara S. Niël-Weise, independent guideline methodologist; Hans J.J.A. de Beer, independent guideline methodologist.

Copyright © 2020 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of Mutaz B. Habal, MD.