The activities grouped under this area of work are linked to ERN CRANIO’s objective to maximise the quality of care provided to patients with rare and/or complex craniofacial anomalies and ENT disorders.
Clinical guideline development:
For some rare or complex conditions, there are no clinical guidelines available at present. Some do have clinical guidelines available, but these are in need of review and revision. ERN CRANIO seeks to develop and/or revise existing clinical guidelines to ensure clinical recommendations are standardised and made available to clinicians and patients based on research of the highest quality.
- Dutch guideline for craniosynostosis (Published in 2015).
A European guideline on Craniofacial Microsomia is currently in development.
With the support of EURORDIS, ERN CRANIO’s patient representatives are currently working on developing ‘patient journey’ documents. Creation of these documents asks patient representatives to reflect on their own personal journey with the rare disease they represent and map what their needs were against what would have been the 'ideal clinical care' at each stage. These journeys are discussed with and added to by others in their rare disease community. The journeys will then be shared with clinicians within the network, facilitating discussion and fostering patient-clinician partnerships.