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EpiReg – a research and quality registry for epilepsy at Haukeland University Hospital, Bergen

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EpiReg represents a research and quality registry where patients treated at Department of Neurology, Haukeland University Hospital are included. The registry has an attached biobank. The aim for EpiReg is to use the collected information for research as well as for quality control. EpiReg is an important tool for Bergen Epilepsy Research Group (BERG), which intends to use the information from this data source in future projects.

EpiReg was established in 2019 with funding from Helse Vest, later also from Helse Bergen. The regional ethical committee has approved it (REK 2018/586). The database is integrated with the journal system of the hospital through Checkware.

EpiReg collects both patient-reported data and medical information. The aim is to include both initial patient information and regular follow-up data. The registry has a particular focus on pregnant women with epilepsy and on women in childbearing-age. The aim is to expand the registry to all patients with epilepsy. Clinical information will be combined with biomarker studies. BERG has ongoing EEG research projects, and these projects plan to use EpiReg-data. The recent EpiNy-project will combine biomarker and clinical data in first-seizure patients and at epilepsy debut. Inclusion in EpiReg is ongoing. Participants give their informed consent before inclusion and can withdraw from the study at any time.

EpiReg was established in cooperation with Norsk Epilepsiforbund, the national patient organization, and it has continuous user support. EpiReg interacts with the national EpilepsiNett project supported by the Research Council of Norway.

Contact information: Katrin Begall katrin.begall@helse-bergen.no

                              Marte H. Bjørk marte.helene.bjork@helse-bergen.no

                              Tel: +47 55 97 5045