EpiNet Project

EpiNet comprises a secure international patient database. Data can be collected about all people with epilepsy in a systematic manner. The goals are to establish registries, and to run large, simple, pragmatic, randomised controlled trials. Trials will be investigator-initiated and independent. We want to create a culture in which epileptologists will automatically seek to enter patients into registries and/or randomised controlled trials when there is uncertainty regarding the optimal treatment. The database is also designed to provide a useful clinical tool for the clinicians who use it. EpiNet records can be linked with other electronic medical records.

Project Status: Ongoing
Start Date: January 1, 2011
ILAE Region: Africa, Asia & Oceania, Eastern Mediterranean, Europe, Latin America, North America
Language(s): English
Location: ,
Principal Investigator / Organizer: Peter Bergin
Contact Person: Erica Beilharz, EpiNet Administrator, epinetadmin@adhb.govt.nz
Patient Age: All Ages
Project Type(s): Clinical, Research
Funding Source(s): Government, Institutional, Private, Foundation, Consumer Organization
Project Need(s): Volunteers, Funding, Other - Neurologists and epileptologists anywhere can become Investigators
Publications Associated with the Project: Bergin, P., Frith, R., Walker, E. and Timmings, P. (2007), How to get the answer to nearly everything: Using the internet for epilepsy research. Epilepsia, 48: 1415-1417. https://doi.org/10.1111/j.1528-1167.2007.01060_1.x Bergin, P., Sadleir, L., Legros, B., Mogal, Z., Tripathi, M., Dang, N., Beretta, S., Zanchi, C., Burneo, J., Borkowski, T., Cho, Y.J., Ossemann, M., Striano, P., Srivastava, K., Tan, H.J., Wanigasinghe, J., D’Souza, W. and (2012), An international pilot study of an internet-based platform to facilitate clinical research in epilepsy: The EpiNet project. Epilepsia, 53: 1829-1835. https://doi.org/10.1111/j.1528-1167.2012.03636.x Bergin, P. S., Brockington, A., Jayabal, J., Scott, S., Litchfield, R., Roberts, L., Timog, J., Beilharz, E., Dalziel, S. R., Jones, P., Yates, K., Thornton, V., Walker, E. B., Davis, S., Te Ao, B., Parmar, P., Beghi, E., Rossetti, A. O., & Feigin, V. (2019). Status epilepticus in Auckland, New Zealand: Incidence, etiology, and outcomes. Epilepsia, 60(8), 1552–1564. https://doi.org/10.1111/epi.16277 Bergin, P.S., Beghi, E., Sadleir, L.G., Brockington, A., Tripathi, M., Richardson, M.P., Bianchi, E., Srivastava, K., Jayabal, J., Legros, B., Ossemann, M., McGrath, N., Verrotti, A., Tan, H.J., Beretta, S., Frith, R., Iniesta, I., Whitham, E., Wanigasinghe, J., Ezeala-Adikaibe, B., Striano, P., Rosemergy, I., Walker, E.B., Alkhidze, M., Rodriguez-Leyva, I., Ramírez González, J.A., D'Souza, W.J. and (2017), EpiNet as a way of involving more physicians and patients in epilepsy research: Validation study and accreditation process. Epilepsia Open, 2: 20-31. https://doi.org/10.1002/epi4.12033 Bergin, P. S., Beghi, E., Sadleir, L. G., Tripathi, M., Richardson, M. P., Bianchi, E., D'Souza, W. J., & EpiNet Study Group (2018). Do neurologists around the world agree when diagnosing epilepsy? - Results of an international EpiNet study. Epilepsy research, 139, 43–50. https://doi.org/10.1016/j.eplepsyres.2017.10.014 Bergin, P., Langan, Y., Beghi, E., Donner, E., Cock, H., D'Souza, W., Thomas, R. and Scragg, R. (2021), Invitation to participate in a prospective case–control study of sudden unexpected death in epilepsy. Epilepsia, 62: 1280-1281. https://doi.org/10.1111/epi.16898