The EpiNet Project

The EpiNet project has been established to facilitate clinical research into epilepsy. We hope to increase the number of people living with epilepsy and medical care providers participating in epilepsy research. Neurologists and epileptologists who are not part of the collaboration are encouraged to join the project.

EpiNet comprises a secure, international, epilepsy patient database that is accessed via the Internet. Access is restricted to approved investigators and is password-protected. Information is collected regarding the seizure type, electroclinical syndrome, aetiology (cause or causes), investigations, intercurrent illnesses, and treatment. All data is encrypted.

The database can be used to set up patient registries and to run simple, pragmatic, randomised controlled trials.

Current Studies

Our current focus is on people with new-onset epilepsy. We have started a series of clinical trials, the EpiNet-First trials, in which patients with new-onset epilepsy are randomised to receive either sodium valproate, lamotrigine, carbamazepine, or levetiracetam, depending on the seizure type.

In parallel with these trials, we have established a registry of patients who start their first antiepilepic drug (AED). This is an observational study where physicians record which drug they start and why the particular AED was chosen.

We invite all neurologists and epileptologists to join one (or both) of these studies. The EpiNet-First trials will give higher quality evidence, but involve more regulatory oversight; formal approval from institutional review boards and ethics committees is required. Investigators need to be accredited before they can recruit patients to the trials. Enrolling patients into the First AED registry is simpler, since this is an observational study, rather than a formal clinical trial.

Neither patients nor investigators are paid to participate in these studies. The AEDs are not provided by the study group.

The EpiNet database can be used to establish a registry for any type of epilepsy. It is of particular benefit for rare epilepsy syndromes. Neurologists and patients who are interested in establishing a particular registry are invited to contact the EpiNet administrator.