Development of an ERN CRANIO registry

In 2019, ERN CRANIO responded to a call under the third programme for the union’s action in the field of health (2014-2020) and applied for financial support to develop a patient registry. The network has successfully obtained this support.

ERN CRANIO is developing a registry focused on the outcome of treatment using standardised diagnosis specific outcome sets (starting with craniosynostosis and cleft lip/palate) - including patient reported outcome measures and outcomes on patients’ quality of life.

Development of illustrative e-learning videos for patients and families

See Training.

The Clinical Patient Management System (CPMS)

The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. ERN CRANIO member hospitals and affiliated partners have access to this platform. Centres not involved in ERN CRANIO may be granted guest access to the CPMS if appropriate and on request.

This video provides an overview of the CPMS. 

We encourage ERN CRANIO members and affiliated partners to register on the CPMS and make active use of it. Please contact the ERN CRANIO project managers with any queries on CPMS registration and use. The project managers are also able to provide login credentials for the CPMS training environment if requested. 

ERN CRANIO has received additional funding from the Connecting Europe Facility of the European Union to coordinate the customisation of the core CPMS data set to ERN CRANIO disease groups

This communication reflects only the author’s view. The European Commission (and the Innovation and Networks Executive Agency) is not responsible for any use that may be made of the information it contains.