ESA Research Partners
Australian Pregnancy Register of Antiepileptic Drugs for Women in Pregnancy with Epilepsy and Allied Conditions
Website: www.apr.org.au
Toll free number : 1800 069 722
The Australian Pregnancy Register (APR) is an independent project that has been running for over 16 years nationally. We are an observational register and collect information about pregnant women with epilepsy, treated and untreated to determine which AED are safest for the baby while protecting the mother from seizures. The APR also enrolls pregnant women who are taking AED s for conditions other than epilepsy such as for control of pain and treatment of mood disorders.
The Register is supported by the Epilepsy Society of Australia, Epilepsy Action, Epilepsy Australia, sanofi aventis, UCB Pharma, Eisai, SciGen, Royal Melbourne Hospital Neuroscience Foundation, NHMRC & Novartis. The APR is affiliated with the European Register (EURAP) and has been approved by the ethics committees of major hospitals.
The APR collects information before and after the delivery on the mother’s medical and family history, social and educational background, previous pregnancies and details about her epilepsy and its treatment.
For further information, download the APR's information sheet.
Enrolment link: https://www.neuroscience.org.au/apr-register
Sydney Epilepsy Incidence Study to Measure Illness Consequences
Epilepsy Action Australia (EAA) and The George Institute for International Health is undertaking a major epidemiological research project to measure the impact and incidence of epilepsy.
This study known as the Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) will explore the incidence, psychosocial impact and the household economic burden of epilepsy in a large population. It is the first time this kind of study has ever been conducted in Australia. The new information it uncovers will bring many benefits to people living with the condition.
This multi-centre three-year study will recruit and follow-up all people with newly diagnosed epilepsy living in the Sydney South West Area Health Service. Recruitment sites include: Royal Prince Alfred, Prince of Wales, Sydney Children’s, Bankstown, Concord and Canterbury Hospitals.
The study aims to identify modifiable factors that enhance resilience and reduce vulnerability to the socioeconomic impact of epilepsy in an Australian population.
The results of this research will provide key data to inform the design and development of EAA services so we ensure real and positive impact to the daily lives of people living with epilepsy. At a broader level, it will enable government and healthcare practitioners to make more informed decisions about policy, funding, and management.
For more information visit:
For more information, see the NTA website or contact NTA CEO Dr Peter Keller. If you are interested in being part of the epilepsy clinical trials network or being on the ESA expert panel, please contact Prof Sam Berkovic, the ESA representative to NTA.