The EpiNet Study Group (Updated May 2014)
The EpiNet Study Group comprises a group of neurologists and epileptologists who intend to use the Internet to undertake research into the clinical management of epilepsy. For this purpose, 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. Participation needs approval of the relevant institutional review boards and ethics committees.
In the short term, we will use the database to set up patient registries, focusing on particular patient groups, with information being collected prospectively. We will enrol 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 will only be accessible by doctors involved in the patient's on-going clinical care.
At the moment the EpiNet study group comprises adult and paediatric neurologists from Australia and New Zealand, Belgium, Italy, Great Britain, Portugal, Canada, USA, India, Pakistan, Sri Lanka, Malaysia, Korea and Nigeria. Most recently, we have also had epileptologists from Albania, Columbia, Georgia, Serbia, France, Sweden and China join the 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)
- Lynette Sadleir (New Zealand)
- Manjari Tripathi (India)
We would like to thank Sam Berkovic and Jorge Burneo for their contributions to the development of the project. Sam was on the steering committee until the end of 2011, and Jorge until the end of 2013.
We have completed an International pilot study. 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 being planned. We are now undertaking a study to determine whether we all 'speak the same language.' Further details about this study - "Is it epilepsy?" are provided on a separate page on this website.
We have finalised the protocols for a series of 5 randomised controlled trials in patients with new-onset epilepsy. These will be known as the EpiNet-First trials. We have submitted an application to the New Zealand Health and Disability Ethics committee. We hope to get underway with these trials later in 2014. We encourage all doctors who treat people with epilepsy to consider participating in these trials - regardless of where in the world you practice.
Co-investigators will need to demonstrate that they are sufficiently knowledgeable about epilepsy before they will be able to enter patient data into the research database.
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
Doctors with an interest in epilepsy who would like to test the website and database are welcome to contact Peter Bergin.