The EpiNet Study Group

Overview

We have constructed a secure international database, with the goal of establishing multi-centre registries, and ultimately, of running large, simple, pragmatic, randomised controlled trials. We would like to create a culture in which epileptologists will want to enter patients into randomised controlled trials whenever there is uncertainty regarding the optimal treatment.

We are currently using the database to set up patient registries, focusing on 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.

Data that is 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  easier to get approval from the relevant institutional review boards and ethics committees.

Governance and Oversight

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 is led by Dr Peter Bergin.

Ettore Beghi was a very active member of the steering committee, and a great supporter of the EpiNet concept, until he died in October 2022, His wisdom and guidance in this endeavour will be greatly missed. He made an enormous contribution to many areas of research in epilepsy. A wonderful obituary to Ettore can be found here: https://www.ilae.org/in-memoriam/Ettore Beghi

We would like to thank Wendyl D’Souza, Mark Richardson, Sam Berkovic, Jorge Burneo, Manjari Tripathi and Lynette Sadleir, who were previous members of the steering group, for their contributions to the development of the project. New members willing to join the steering committee are currently being sought.

Recent Devevlopments

In 2023 we established a registry for children with infantile spasms in South Asia. This study has been initiated by Dr Jithangi Wanigasinghe from Sri Lanka. We have now also established a registry for people with Progressive Myoclonic Epilepsy; this is being overseen by Drs Masao Matsuhashi and Akio Ikeda from Kyoto, Japan. Finally in 2023 we have established a registry for patients who undergo epilepsy surgery from the Asia-Oceania region. This registry has the acronym ‘ARISE’ which stands for ‘Asia-Oceania Region ILAE Surgery for Epilepsy’ database. This registry is being overseen by Dr Sarat Chandra from Delhi, India, and Dr Kensuke Kawai from  Japan.

in 2020 we launched an international registry for patients who die from SUDEP. We are currently undertaking a major Case control study in which we want to compare epilepsy factors and life-style issues of 200 people who die from SUDEP with 600 controls who have not died. This study is still actively recruiting, and new investigators are welcome to join the study. Further details for these projects can also be found on the Studies tab.

In 2018 we released a revised form to collect information about patients who have had a first seizure. We have also started a registry for patients who have had serious skin reactions to their AEDs.  We have created a form to collect very detailed information about patients who have episodes of status epilepticus. Further details can be found on the Studies tab.

Teaching Module regarding Seizure Classification

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.

Earlier Studies

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, and to strengthen the research group. 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. Further improvements are  being made continuously.

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.

Pragmatic randomised controlled trials

We have attempted to run our first pragmatic randomised controlled trials in patients with newly diagnosed epilepsy, but we struck major administrative obstacles, and we are not continuing with these particular trials. However, we remain keen to  conduct simple pragmatic randomised controlled trials to improve the care of people with epilepsy. Trials will be investigator-initiated and independent of pharmaceutical companies.

Clinical Functionality

Although primarily for research purposes, the database is also designed to provide a useful clinical tool for the clinicians who use it. All information entered is provided back to the doctor in summary form, so that it can be printed out and sent to the primary caregiver, put in the patient’s notes, and / or given to the patient. In addition, each clinician will be provided with an on-line database of all the patients for whom he or she has entered data. Our view is that if we can create a tool that is clinically useful, then this will make it easier to simultaneously conduct high quality research. We believe that we have now achieved this goal. 

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 August 2023)

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