EpiReg is a comprehensive system developed for prospective and digital registration of data on patients with epilepsy at the Department of Neurology, Haukeland University Hospital.
The purpose is to collect high-resolution, structured information that can improve both clinical practice and scientific understanding of epilepsy.
The system records clinical information from doctors and nurses, as well as patient-reported data via a separate app developed in collaboration with Checkware. Haukeland University Hospital is responsible for the registry. By integrating different data sources, EpiReg enables comprehensive insight into the patient's journey from diagnosis to follow-up.
The data is used in research projects, quality improvement and in daily clinical work – including to assess needs and treatment choices. Blood samples from participants are stored in a biobank for future analysis. This provides a valuable opportunity to identify biomarkers that can contribute to more precise and individualized treatment.
The goal is to include all patients who receive a diagnosis of epilepsy and provide informed consent. So far, special emphasis has been placed on patients with newly diagnosed epilepsy (EpiNy) and women of childbearing age. Such insight is particularly important for understanding the development of the disease and the effects of treatment in early phases and in vulnerable phases of life.
The research combines clinical data with registry and biomarker data from EEG and blood. This interdisciplinary approach provides the basis for new knowledge about disease mechanisms and long-term effects of treatment.
EpiReg has a leading role in the national initiative EpilepsiNett , and contributes to strengthening the clinical and research-based knowledge base for the treatment of epilepsy in Norway. The collaboration provides broad national support and access to unique data material for research and quality assurance.
The project is anchored at the University of Bergen, through the Clinical Institute 1 at the Faculty of Medicine , and is run in close collaboration with Haukeland University Hospital.
This anchoring ensures interdisciplinary expertise and access to both patient data and infrastructure for advanced clinical research.