ERN CRANIO registry

2026-07-22

A difficulty in treating rare and/or complex craniofacial anomalies and ENT disorders is that there is limited information to substantiate the treatments, doctors, patients and policy makers use and advocate. Current clinical practice varies tremendously within and between European countries, particularly in regards to the timing of treatment and the surgical technique used. This makes cross-country comparisons difficult and because of this, optimal clinical care is difficult to identify. To overcome this, consensus on a baseline criteria must be established across various member states, and recorded in a common ‘data dictionary’. Next, relevant outcome data must be defined, including their timings and method of recording. Finally, the ERN CRANIO registry will collect standardized outcome data using PROMs and QoL instruments. The outcome data will initially be collected for the two largest diagnostic groups within ERN CRANIO, craniosynostosis and cleft lip/palate. This project seeks to standardise the collection of patient data across Europe, for the ultimate benefit of patient care. This will help clinicans to identify and provide optimal care which will help to reduce health equalities for patients across Europe.

Netherlands

2025-10-01