We have constructed a secure international database, with the long term goal of running large, simple, 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.
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, 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.
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.
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 have made significant improvements to the database. Further improvements are planned.
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 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.
Earlier 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 now set up an international SUDEP registry, and we have commenced a case control study of SUDEP. Further details can be found on the Studies tab.
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.
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 December 2021)
Doctors with an interest in epilepsy who would like to test the website and database are welcome to contact Peter Bergin.