A Monash University-led study reveals that the Australian Pregnancy Register set up to help pregnant people with epilepsy has helped to dramatically reduce the number of stillbirths and congenital disabilities such as spina bifida.
The paper, published in the peer-reviewed journal Neurology, analysed the economic benefits to the community of the Australian Pregnancy Register, which has been running for over two decades.
The voluntary nationwide register collects information from pregnant women or those who have given birth recently to determine which anti-seizure drugs are safest for babies while protecting expectant mothers from seizures.
Lead author Associate Professor Zanfina Ademi said the register aims to facilitate improvements in clinical care and management over time and contribute to knowledge and improved understanding.
The study compared two categories of women with epilepsy over 20 years to 2019. The first group was assumed to have signed up to the register, while the other cohort had not.
“We looked at the register’s effectiveness, in terms of preventing adverse pregnancy outcomes, along with the costs of such negative outcomes to society,” Associate Professor Ademi said.
“Interestingly, we estimated that the information collected by the register led to a decrease of 1147 stillbirths over the two decades.”
The study also showed about 5500 fewer babies born with defects and almost 2700 fewer miscarriages due to the register.
This led to $9 billion in cost savings to society, including future gains due to the prevention of morbidity and mortality and a $191 million reduction in healthcare costs, Associate Professor Ademi said.
Professor Terry O’Brien, also an author of the study, said, for example, spina bifida, one of the most severe foetal malformations associated with anti-seizure medication, generally leads to shorter lifespans, major disability, and places a large human and economic burden on caregivers.
“The more information we can gather through this register, the greater chance we have of helping mothers-to-be with epilepsy have healthy babies in the future,” said Professor O’Brien.
