Download: PDF RTF XML Booklet: Review (0) Retrieve Add item
An Operational EPICARE Registry for all Rare and Complex Epilepsies [EPICARE-GRANT] [947664] - Project
Project abstract

Within our EPICARE network, we want to build a useful registry for all patients with rare and complex epilepsies. This registry will contain the common data elements, as proposed by EU RD platform, as well as key epilepsy data fields such as etiology and treatment modalities. The existing pilot version of our registry will be updated and put an a REDcap platform. Pseudonymisation will be done with the EUPID tool and data fields will be FAIRified, so that interoperability with other registries and database will be possible. Links with Orphanet, WHO and genetic databases will be installed. After a pilot trial, the registry will be rolled out in all EPICARE centers. In a next phase, collaborations with other partners such as RD NEXUS and patient organisations (EPAG) will be established so that the EPICARE registry will become a pivotal element in all EPICARE activities. The EPICARE registry, as well as the links with other ERN and non-ERN registries and databases, will allow us to identify where in Europe the patients are located with rare and complex epilepsies and will make dedicated research, optimisation of diagnosis and treatment possible.

Start date: 01/05/2020
End date: 30/04/2022
Duration: 24 month(s)
Current status: Finalised
Programme title: 3rd Health Programme (2014-2020)
EC Contribution: € 399 756,00