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ERN CRANIO GUIDELINES

For some rare or complex conditions, there are no clinical guidelines available at present. For some diseases, these are available but some may require review and revision. There can be significant variability in the quality of existing clinical guidelines.

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ERN CRANIO seeks to endorse, develop or revise existing clinical guidelines to ensure clinical recommendations are made available to clinicians, patients and their families/carers based on research of the highest quality. 

CRANIOSYNOSTOSIS GUIDELINE

ERN CRANIO endorses the updated Dutch guideline on the treatment and management of craniosynostosis (2021) [in English].A version tailored specifically for patients and their families is available in Dutch and English. 

CRANIOFACIAL MICROSOMIA GUIDELINE

ERN CRANIO has developed a European guideline on craniofacial microsomia, which was published in the Journal of Craniofacial Surgery in November/December 2020. A version tailored specifically for patients and their families is also available.

CLEFT LIP/PALATE GUIDELINE

ERN CRANIO endorses the Dutch guideline for 'schisis' (published in 2017). [The term “schisis” in Dutch encompasses all types of facial clefts, most commonly clefts of the lip and/or palate]. 

NEUROFIBROMATOSIS GUIDELINE

ERN CRANIO endorses the ERN GENTURIS tumour surveillance guidelines for individuals with neurofibromatosis type 1, where the ERN CRANIO network coordinator dedicated one chapter on neurofibromatosis

ROBIN SEQUENCE GUIDELINE

ERN CRANIO has developed a European guideline on Pierre Robin Sequence, which is published in the Journal of Craniofacial Surgery. A patient and family-friendly version will be developed as well.

FACIAL DYSOSTOSIS CONSENSUS STATEMENT

ERN CRANIO has developed a European consensus statement on Facial Dysostosis syndromic, which covers Treacher Collins, Nager and Miller syndrome. A consensus statement is one evidence level lower then a clinical practice guideline, where experts from expertise centres agree on different aspects of care and treatment of these patients. A patient and family-friendly version will be developed as well.

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