The EpiNet Study Group 

The EpiNet Study Group comprises a group of neurologists and epileptologists from many countries who are using the Internet to undertake research into the clinical management of epilepsy. We have constructed a secure international database, with the goal of collecting data about different types of epilepsy in a systematic manner. We have commenced a series of registiries, and in the long term, we intend to run large, simple, pragmatic, randomised controlled trials. Trials will be investigator-initiated and independent of pharmaceutical companies. We would like to create a culture in which epileptologists will automatically seek to enter patients into randomised controlled trials when there is uncertainty regarding the optimal treatment.

At the same time, the database is also designed to provide a useful clinical tool for the clinicians who use it. Patients have an internet-based clinical record that provides detailed information about their epilepsy history; records can potentially be shared with other physicians involved with the patient's care. All information entered is available to the doctor in summary form, so that it can be printed out and given to the patient, or sent to the primary caregiver or other health-care provider, or put in the patient's notes. In addition, each clinician will be provided with an on-line database of all the patients for whom he or she has entered data.

All data transmitted is encrypted, and access to the database is password-protected. Data can be pseudonymised, so that no personal identifying data need be transmitted outside the investigator's country. This makes it relatively easy to get approval from the relevant institutional review boards and ethics committees.

We are currently using the database to set up patient registries for particular patient groups, with information being collected prospectively. We are enrolling both adults and children in the database. This data will potentially be available in a de-identified form for review by EpiNet investigators. Personal and/or identifying data is only accessible by doctors involved in the patient's on-going clinical care.

Rules for collaboration

We have established rules by which we have agreed to collaborate and a steering group who will oversee the development of the project. The current steering group comprises:

  • Peter Bergin, Chairman (New Zealand)
  • Ettore Beghi (Italy)
  • Wendyl D'Souza (Australia)
  • Mark Richardson (Great Britain)
  • Manjari Tripathi  (India)

We would like to thank Sam Berkovic, Jorge Burneo and Lynette Sadleir, who were previous members of the steering group, for their contributions to the development of the project.

Achievements to date

We completed an International pilot study in 2012. A full report on this was published in Epilepsia, and is available on the Resources Page from this website. The pilot study was undertaken to test the website and database. Following the completion of the pilot study, we reviewed all aspects of the data-entry process, and the structure of the database, and  made significant improvements to the database.

We have undertaken a study to determine how much variability there is in diagnosis of epilepsy. Further details about this study - "Is it epilepsy?" are provided on a separate page on this website. Reports have been published in Epilepsy Research and Epilepsia Open.

We have produced a teaching module regarding the 2017 ILAE seizure classification. Investigators are invited to review brief case histories and determine what type of seizures the patients have. Please see the link at the top of the website. This gives a case-based introduction to the current seizure classification. We expect all investigators to complete this module.

We are underway with a series of 5 randomised controlled trials in patients with new-onset epilepsy. These are the EpiNet-First trials. We received approval from the New Zealand Health and Disability Ethics committee in late 2014, and approval has now also been obtained from several other countries. We recruited our first patients in May 2015. We encourage all doctors who treat people with epilepsy to consider participating in these trials - regardless of where in the world you practice. Details of the trials are available on a separate page on this website.

We have  started a registry for patients who have had serious skin reactions to their AEDs. 

SUDEP studies now underway

In early 2020, we established a multi-national SUDEP registry. We have now commenced a major international case-control study of SUDEP. When investigators hear of a case of SUDEP amongst their cohort of patients with epilepsy, we would like them to interview a close relative. In addition, we intend to interview controls with epilepsy who have not died to try to identify risk factors that may increase or decrease the risk of dying. Please contact the EpiNet administrator if you would like to contribute to this research project.

We welcome enquiries and suggestions from interested epileptologists. We know that there are people not yet involved who will have good ideas about how this project could develop. We are keen to receive all constructive advice.

Peter Bergin, on behalf of the EpiNet Study Group  

(Updated April 2021)

Doctors with an interest in epilepsy who would like to test the website and database are welcome to contact Peter Bergin.

Neurological Foundation
ADHB
Julius Brendel Trust
Centre for Brain Research