ERN EpiCARE was successful in obtaining a grant to create a registry that can be utilised across the ERN network.
This registry will allow us to better understand the epidemiology of rare and complex epilepsies, allow us to determine the natural history enabling us to provide guidelines for early recognition of the diseases therefore reducing inequality in diagnosis. It will also localise patients and facilitate their participation in therapy trials, allowing their access to optimised care. Finally, this will lead to better and more equality in patient care across Europe.
Work has started on this project from May 2020 and involves a diverse team who will not only create the REDCap registry but will also ensure that it is FAIRified, meaning that the data will be Findable, Accessible, Interoperable and Reusable.
- Short term (within 12 months): to setup a production level central REDCap registry that will be utilised by all EpiCARE centres and to further develop and ensure operability (with EUPID pseudonymisation) of the EpiCARE registry.
- Medium term (within 18-24 months): Making the registry interoperable (‘FAIRification’) so that linkage with codes, for example, Orphanet and WHO, as well as genetic databases becomes possible. Development of extra fields of interest, specifically related to epilepsy characteristics (such as specific surgery registry, neuropsychology, etc).
- Long term (24 months and beyond): Direct full portal for patient reported outcomes. A ‘hub-like platform’ for connectivity with other existing registries for rare epilepsies will be created. This will not only include links within EpiCARE (e.g. psychology or surgery databases), but also connections with patient organisations (ePAG), HCP’s or others (such as RD-NEXUS).
The data will be anonymised and only the treating epileptologist of a given patient will be able to make the link between the data and the name.
Project Core Team
Prof. Lieven Lagae
Prof. Helen Cross
Ms Allison Watson (ePAG Representative)
Ms Nicola Openshaw-Lawrence