We have set up an international epilepsy database that can be accessed via the internet, with the purpose of identifying patients who would be suitable for clinical trials in epilepsy. We want to run large, simple, pragmatic, investigator-led multinational trials on a very low budget. We are wanting to ask questions that pharmaceutical companies are not interested in.
We are currently undertaking an international pilot study to test the interface itself. At present, we have participants from 9 countries (New Zealand, Australia, Belgium, Italy, India, Pakistan, Korea, USA and Canada.) Later this year we will be launching a registry for newly diagnosed epilepsy patients (or patients taking their first AED.) Once we have some momentum, and a large enough group of investigators, we hope to launch some simple clinical trials.
More information, and a demonstration of the forms for entering data into the database, can be seen at this website:
The project is being overseen by a steering committee. This comprises:
Peter Bergin (Auckland, New Zealand)
Ettore Beghi (Milan, Italy)
Wendyl D’Souza (Melbourne, Australia)
Lynette Sadleir (Wellington, New Zealand)
Sam Berkiovic (Melbourne, Australia)
Mark Richardson (London, UK)
Jorge Burneo (London, Canada)
We are keen to get as many epileptologists involved in the project as possible.