Workpackage 12 – E-database
One of the aims of the EpiCARE network will be to identify the currently existing registries and databases on rare and complex epilepsies in Europe. Many institutions, networks as well as patient organizations have already developed or are in the process of developing a database with key information on patients with a specific epilepsies, at both national and European levels. Notable examples of organizations with rather well developed databases are the Dravet Syndrome European Federation, and Tuberous Sclerosis. Some organizations also gather crucial patient information through questionnaires. After identification of databases, a next step will be to look for common denominators and to merge some of the common topics across the datasets. This will allow us to better estimate and describe the true incidence of typical disease characteristics. It will for instance be possible to find common co-morbidities (such as depression, memory problems, and cognitive problems) across many rare and complex epilepsies. Efficacy and side effects of older and newer treatment options can be compared for different epilepsies. We will also determine whether the existing or newly developed guidelines by EpiCARE are also applicable for specific epilepsy syndromes. At the research level, managing the databases and registries will allow us to recognize specific patient groups for advanced diagnostic and therapeutic studies and/or for answering specific research questions.
One of the final deliverables of this work package will be to construct a common “minimum E-database” with key disease features. This electronic database will be disseminated for use in the network which finally will lead to better and more standardized patient care. The platform we will use to build this E-database is REDCap (Research Electronic Data Capture), already utilised by E-pilepsy.
- Identification of exiting databases / registries for rare and complex epilepsies
- Linking of databases / registries
- Building E-database with key clinical features
- D12.1 Report on existing rare epilepsy registries in Europe
- D I.2 Charter of working group at month 4
- D I.3 Database of existing registries at month 24
- D I.4 Number of patients in central registry at month 48
- M13 Registry available for all rare epilepsies at end of year 3
Pr. Lieven Lagae, MD, Phd