Abstracts

Rationale: There is currently little evidence to guide the choice of anti-epileptic drugs (AEDs). Relatively few patients get enrolled in epilepsy trials. Few studies have compared AEDs or been focussed on epilepsy syndromes. Patients with different aetiologies may have different responses to specific drugs or drug combinations. In the EpiNet project, epileptologists will use the internet to enroll patients in multi-center registries, and to conduct investigator-led, pragmatic, low cost, randomized controlled trials in epilepsy. Methods: A secure epilepsy patient database that can be accessed via the internet has been created (www.epinet.co.nz ). Patients can be registered from anywhere in the world. We have undertaken an International Pilot study to ensure that the platform is efficient and user-friendly for doctors from different health systems and cultures. Patients were not entered into trials in this study. Any patient with epilepsy could be registered, but investigators were encouraged to register patients for whom they were uncertain of the optimal management, since these patients may be suitable for trials. Investigators receive a searchable on-line database of their patients. Approval was obtained from all appropriate ethics committees and institutional review boards. Although primarily for research, the platform has also been designed to improve clinical care of patients. Patients determine who can access their records, which can be shared by clinicians from different hospitals or clinics. Information in a record is immediately made available to clinicians in a printable, user-friendly summary. Results: As of 12 June, 2011, 41 investigators from 17 centers in 9 countries had enrolled 382 patients. Investigators were from New Zealand, Australia, Belgium, Canada, India, Italy, Pakistan, Korea, and USA. Neurologists in Brazil, Great Britain, Portugal, Bangladesh, Indonesia and Sri Lanka have also applied to their ethics committees to join the project. Patients ages ranged from 3 months to 89 years. 20 patients had electroclinical syndromes of infancy or the neonatal period, 14 had childhood syndromes, and 47 had syndromes of adolescence or adult onset. 28 patients had epilepsy constellations, of whom 23 had mesial temporal sclerosis. 23 different aetiologies were recorded with 99 patients having some form of acquired brain disease. The aetiology was unknown in 103 patients. Investigators reported that 260 of the patients would be suitable for randomised controlled trials. This trial demonstrated several remediable problems with the website and database. Conclusions: The EpiNet platform has enabled epileptologists from many countries to identify patients who would be suitable for research. Changes to the platform are now being made to improve its utility. We will soon launch multiple registries of patients with particular characteristics. We plan to then commence investigator-initiated therapeutic trials in patients for whom there is clinical equipoise. We invite all interested epileptologists to join the EpiNet study group.