CRANIO – European Reference Network for Craniofacial Anomalies and ENT Disorders

Congenital craniofacial anomalies consist of developmental malformations of part of the brain, skull and/or face and ear/nose and throat districts, which are associated with relevant functional and psychosocial problems. These patients require care from birth through adulthood. Knowledge, clinical and public, of many of these conditions is scarce and therefore formulating a correct diagnosis can be extremely challenging.
The ERN CRANIO aims to fill many of these gaps regarding the management of these patients. The network aims to create training courses on many of the craniofacial anomalies through an open website.
Network members are working together to improve education, professional training, and research also in close collaboration with patient organizations. For conditions for which there are no patient organizations yet, patient focus groups will be consulted. ERN CRANIO is analyzing participating centers the timing and type of surgery to shed light on the clinical impact of the intervention and on the best clinical practices available in Europe.
Thanks to the collection of the long-term outcomes of the different conditions, the ERN CRANIO will be able to support the counseling of patients and parents and will also direct the focus of treatment in areas that have received too little attention until now. Finally, the ERN CRANIO aims to promote the search for new genes responsible for these pathologies, increasing the number of participants in scientific studies.