Around 3,000 people with epilepsy in the Australian state of Tasmania are being invited to join a register of people with the condition, a move that organisers claim is the first such register in the world.
The Tasmanian Epilepsy Register is a voluntary list of people in the state who use anti-epileptic drugs to control their epilepsy.
The Health Insurance Commission will, this month, send out a letter asking all people in Tasmania who get medicines, usually taken for epilepsy, if they would like to take part in the register.
The Register will provide the basis for investigation in to the health outcomes of people with epilepsy. The Register will help show how many people are treated for epilepsy in Tasmania and whether the condition is being controlled or not. The register will also help researchers study and find better ways to prevent and treat epilepsy.
Research findings using information from the Register will have major Australian and international significance. Researchers hope that the Register will provide a unique opportunity to study families and as such be at the scientific forefront in the identification of the underlying genes involved in causing some of the most common forms of epilepsy.
It is hoped that this approach will allow earlier diagnosis, permit identification of affected versus unaffected persons within a family, facilitate family planning, and enhance the search for new therapies.