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 to develop this registry.
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.
To support the goals of ERN CRANIO, to pool together disease-specific expertise, knowledge and resources from across Europe, a European-wide registry is being developed for patients with rare and complex craniofacial anomalies, and ENT disorders. This registry allows for secure collection of patient data from across Europe, which will improve the understanding and treatment of these conditions. It will also facilitate research and lead to better care for these patients.
WHAT DOES THE REGISTRY ENTAIL?
The registry covers a wide range of rare craniofacial anomalies and ENT disorders, including craniosynostosis, cleft lip and palate, rare genetic deafness, craniofacial microsomia, and orodental anomalies. For each diagnosis, a group of European specialists worked together to reach consensus on relevant outcome measures and treatment endpoints. This will allow for comparison of care on a level not previously seen, which will greatly increase opportunities for improvement.
HOW WAS IT DEVELOPED?
The registry was built and is hosted in collaboration with MOLGENIS, a company that specializes in registry development and support. The platform is user-friendly and provides the highest levels of patient data security. Additionally, it supports FAIR interfaces for data exchange.
ERN CRANIO REGISTRY DATASETS
Currently the datasets used for craniosynostosis, and cleft lip and palate are ready for implementation. The ERN CRANIO registry team and European specialists are currently working on finalizing datasets for rare genetic deafness and craniofacial microsomia. In case of any questions regarding the ERN CRANIO registry, please email to: email@example.com.