In Genet, we synchronize all data collected with Genet-GPD, demographic data including medication, diagnosis, and pre-post data of clinical improvement. Moreover, we aim to collect several clinical and neurocognitive measures to better understand the role of treatment and seizure parameters on clinical outcome and cognition.
The assessed measures of Genet have been harmonized with other multi-center studies such as GEMRIC and NEKTOR.
All data are stored at the Study Center of the University Hospital Bonn (SZB) using RedCAP and in compliance with local and international data security and ethics regulations.
If you want to join and/or need further support for data collection and/or ethics approval, please do not hesitate to contact us.