The overall aim of the project is the improvement of precision medicine in genetic epilepsies and associated syndromes. In detail, we aim to deliver a registry (EpiReg, built on RedCap) of defined genetic (and other) epilepsy cases (all ages) and associated syndromes as a baseline for further studies. This register will be built on existing and novel case collections, pseudonymized patient/relative reports and be adjusted to current computational standards of database infrastructure and management. To facilitate data collection and harmonization between partners, a common minimal data set and database standard for patients is available. Several clinics and institutes are integrated to an EpiReg consortium which provides the structure of the registry, the security of data and decides for projects built on the registry.
Start date: 1 January 2023
Region: Europe
Language: English
Lead institution: University of Aachen, Germany
Location: Germany, to become international
Principal investigator / organizer: Yvonne Weber
Patient age: All ages
Type of project: Research
Funding sources: Institutional, University
Project needs: Case reports
Contact: Yvonne Weber