Developing a Registry for rare and complex epilepsies is a very dynamic process, with continuous challenges and needs to update and refine the content. We are confident that its creation will offer the EU epilepsy community a unique tool to support both clinical practice and research.
The creation of a centralized registry between EpiCARE accredited centres is one of the main deliverables requested (from all 24 ERNs) and funded by the European Commission. Since the creation of EpiCARE, in 2017, several steps were taken towards such an aim, including the identification of already existing registries and/or databases (the latter usually linked to funded research projects). Notable examples of organizations with rather well-developed databases are the Dravet Syndrome European Federation, and Tuberous Sclerosis.
The next step was to analyse the current needs of the epilepsy community (clinicians, researchers, patients), evaluate available resources and put needs into equation with available means.
Under the leadership of the Leuven EpiCARE centre KUL (co-beneficiary of the 2023-27 management granted funded by the EU) the EpiREG workgroup includes a multidisciplinary panel of epilepsy specialists, a qualified Data Manager, as well as patient representatives and IT specialists (a subcontracted company, BIOMERIS).
From a scientific point of view a clear distinction was made from onset between a “Registry” and a “Database”. The ERN EpiCARE decided to create a simple and user-friendly tool, including the EU defined Common Data Elements (eg demographics, ORPHANET codes) and specific epilepsy items, focusing on aetiology. The aetiological categories respect the ILAE classification: genetic, structural, immune, inflammatory, metabolic and unknown background parameters. EpiREG’s main aim is to allow, whenever needed, an easy identification of those EpiCARE centres, that follow patients with each of the rare and complex epilepsies.
For exclusively administrative reasons*, independent of our wish, the EpiREG template is currently being implemented as a local tool in all EpiCARE centres – an obligation for all EpiCARE members, full or affiliated- on a dedicated REDCap platform.
Pseudonymisation with the SPIDER software will soon allow to eventually congregate all EpiCARE local registries within one central server. At that point dedicated clinical research questions can be supported with our registry data. It will soon be possible to link to our main Registry, sub-registries, or detailed databases, funded by academic research projects and developed for specific projects (eg. Neuropsychology; Neonatal epilepsies; TuberousSclerosisComplex; …).
The Registry template content produced by EpiCARE can be offered, upon request, to all other epilepsy centres wishing to homogenize the collection of essential data in their respective Institutions.
Developing a Registry for rare and complex epilepsies is a very dynamic process, with continuous challenges and needs to update and refine the content. We are confident that its creation will offer the EU epilepsy community a unique tool to support both clinical practice and research.
*We are fully aware of the difficulties encountered by the medical teams, usually due to legal issues and/or lack of support from their respective Institutions. Indeed, many hospital administrations interpret the creation of an across the EU Registry for Rare Diseases as a research project per se, which is definitely not the case. The issue becomes even more complex, due to the diversity and autonomy of national health systems when the discussions concern data sharing. Our WG will contribute to the procedures to be initiated within Direct Action grant to member states, JARDIN, aiming at the development of recommendations for national RD data governance models that will be interoperable with the ERN registries and CPMS.
July 2025. Munich (Germany). Lieven Lagae. You are in charge of the central EpiCARE registry, epiREG, from the beginning. What were the main difficulties encountered? What are the benefits of medical teams using such a registry?
EpiREG
The EpiREG Registry, part of the ERN EpiCARE network, is helping doctors and researchers improve diagnosis, treatment, and care by sharing expertise and data across Europe. This video explains how EpiREG works, how your information is kept secure, and why joining can make a real difference. By participating, you contribute to groundbreaking research, the development of better treatments, and the improvement of care for rare epilepsy patients everywhere. Watch now to learn more and see how you can be part of this important initiative.
February 2020. Lyon (France). Lieven Lagae.
ERN EpiCARE Registry Webinar Video
If you are interested to voluntarily contribute to this WG activities, please use the contact form to let us know.
