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Epilepsy Australia National Helpline
1300 852 853

Research Registers

The Australian Epilepsy Research Register [AERR}

The Australian Epilepsy Research Register (AERR) is a database of people who have epilepsy and who have give permission to communicate with them on an ongoing basis for the purpose of social and psychological research.

The primary objective of the register, and research over a period of time, is to learn valuable information about epilepsy, and its social and psychological effects, that can be used to improve the lives of people affected by this condition.

The Research Register was created in 2006 and is an initiative of the Epilepsy Foundation based in Victoria. Any person in Australia who has epilepsy or a seizure disorder, or is a carer of a person with epilepsy, can join this register.

Online registration is now available.

For further information contact the Epilepsy Foundation on 03 8809 0600

The Australian Pregnancy Register for Women on Antiepileptic Medication

For women with epilepsy the absolute risk of birth abnormalities is 4-6% double the risk of 2-3% that exists in the general population. Is this increased risk caused by the effects of their seizures; the drugs or combinations of drugs they have to take; their genetic background or environmental factors?

In May 2000 a group of Australian researchers launched a national registry for pregnant women with epilepsy. The role of Pregnancy Registers is to assess the risks to babies exposed to antiepileptic drugs (AEDs), to compare the efficacy of various drugs, and to observe possible improvements in management practice over time. The Australian Pregnancy Register is a voluntary Australian-wide registry of patients who become pregnant while taking an antiepileptic drug has been established. This registry follows, in large numbers, women throughout their pregnancy and helps to determine the real factors for this increased risk in birth abnormalities.

Target Group

Women with epilepsy who become pregnant whether or not they are taking antiepileptic medication.
Women who become pregnant while taking an antiepileptic medication for an indication other than epilepsy.

To register call Australian Pregnancy Register 1800 069 722.
or visit Australian Pregnancy Register

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