The EpiNet study group has established an open-ended epilepsy database. Investigators are welcome to register any patient who has had one or more epileptic seizures.

We have set-up several registries to follow specific groups of patients. At the present time we have registries for:

• First Seizure
• First Anti-epileptic drug
• Withdrawal of AEDs

Records for patients in these registries should be updated at least once per year.

We have also set up a SUDEP registry and have commenced a SUDEP case control study.

We have also commenced our first pragmatic randomised controlled trials – the EpiNet-First trials. Specific approvals from ethics committees and institutional review boards will be required for these trials. (See separate page on this website regarding these trials.)

Any EpiNet investigator is welcome to propose a registry or clinical trial – indeed users are encouraged to do so. When establishing a registry, it is possible to add extra questions which are particularly relevant for specific patient groups, and/or to determine which questions are mandatory. It is possible to set rules regarding time of follow up, or to restrict who can participate in registries to a subgroup of EpiNet investigators (eg just Paediatric Epileptologists).

Click here to access the epilepsy database.

Peter Bergin, for the EpiNet Steering Committee.