Other Epilepsy Research

Australian Pregnancy Register

The Australian Pregnancy Register (APR) is an independent project that has been running for more than 18 years nationally.  This is an observational register that collects information about pregnant women with epilepsy, treated and untreated, to determine which Anti-epileptic Drugs (ASMs) are safest for the baby while protecting the mother from seizures.

As a result of this study, we are getting closer to defining safer treatment choices.

The Register would benefit from a boost to the number of women participating in the study, as well as increasing the length of the study, to ensure enough evidence is collected for the findings to become treatment guidelines.

This is a voluntary, nationwide study that is enrolling women who are currently pregnant or who have given birth recently (infants up to 12 months of age) in the following categories:

  • Women with epilepsy taking ASMs
  • Women with epilepsy not taking ASMs
  • Women taking ASMs for other conditions.

The aims of the project are:

  • Evaluate the incidence of adverse foetal outcomes resulting from pregnancies exposed to ASMs
  • Determine if certain ASMs or combinations are associated with a higher incidence or specific types of adverse pregnancy outcomes
  • Determine the influence of the seizures, the epilepsy type, the genetic background and environmental factors
  • Study the comparative efficacy of ASMs on seizure protection in pregnancy, assessed on the basis of self-reporting and increased dose or additional drug requirements.

How to enrol

Potentially-eligible women can enrol by:

  1. Calling: 1800 069 722
  2. Emailing the Australian Pregnancy Register team
  3. On line by clicking on the “Register Now” button.

Alternatively, a doctor or health professional can contact the Pregnancy Register directly.

Steps to becoming part of the Australian Pregnancy Register

  1. Dedicated research nurses determine eligibility, establish contact details.
  2. Information and consent form for enrolment are sent.
  3. Eligible participant signs and returns consent form (stamped self-addressed envelope provided).
  4. Telephone contact to confirm returned consent and organise time for interview.
  5. Return by post/email a copy of the completed consent.

There are no appointments or visits for this study; all information is gathered by way of four telephone interviews (or a combination of calls depending on point of enrolment) at the following time points:

  1. On enrolment
  2. 7 months gestation
  3. 4-8 weeks post-delivery
  4. 1 year post-delivery.

During the interviews, women have the opportunity to ask any questions relevant to the pregnancy and birth, their epilepsy and their anti-epileptic medication.

More information about the Australian Pregnancy Register can be found on their website.

Join the Australian Pregnancy Register Facebook page

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