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.