Network activities

ERN CRANIO engages in seven areas of work ('work packages') which are applicable to all three diagnostic groups covered by the network (1. Craniosynostosis and other craniofacial anomalies 2. Cleft lip/palate / orodental anomalies 3. ENT disorders).

1. Management

This area of work refers to the day-to-day management and coordination of the network and its activities.

2. Dissemination

This area of work refers to the distribution of information on ERN CRANIO activities, outputs and events and ERN-developed resources to healthcare professionals, patients and their families across the EU and beyond.

3. Evaluation

This area of work refers to the practice of monitoring ERN CRANIO’s activities and performance. This is completed in line with European Commission requirements.

4. e-health

This refers to clinician use of the EU-developed online platform; the Clinical Patient Management System (CPMS). It also refers to the development and/or use of e-resources and tools and the development of an ERN CRANIO patient registry.

5. Training 

This area of work refers to activities related to the development and provision of training /educational materials, targeted at both healthcare professionals, patients and families.

6. Standards of Care

This area of work refers to activities related to the development, revision and implementation of care standards (including the development/revision of clinical guidelines).

7. Outcome measurement 

This area of work refers to the implementation of standardised outcome sets for standardised data collection.

A ‘scientific committee’  has also been set up within ERN CRANIO to support the initiation of multi-centre research studies. The committee also plays a role in defining the regulations surrounding this. The committee is made up of representatives from different ERN CRANIO centres.