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EpiSafe project launched to create personalised care for pregnant women with epilepsy

The National Institute for Health and Care Research (NIHR) has invested over £2.7 million in research aiming to reduce maternal mortality risk and improve the care of pregnant women with epilepsy. Led by researchers at the University of Birmingham in collaboration with the Epilepsy Research Institute Shape Network PPIE group, the EpiSafe project was launched at an event hosted by Baroness Cumberlege at the House of Lords on Wednesday.

In the UK epilepsy affects 0.4% of women giving birth, but accounts for 10% of maternal deaths. The EpiSafe project, funded by the National Institute for Health and Care Research (NIHR), will create and trial an evidence-based, personalised care programme specifically designed for pregnant women with epilepsy.  

Researchers from the University of Birmingham, led by Professor Shakila Thangaratinam, will provide healthcare professionals the tools and guidance they need to streamline the care they provide. This will allow for shared decision-making with women regarding their epilepsy and pregnancy. The project will also study the long-term neurodevelopment of children exposed to the newer anti-epileptic drugs while they were in the womb.  

The Institute’s Director of Research Partnerships, Dr Caoimhe Twohig-Bennett, said: 
“The Institute launched last month with Reproduction & Hormones as one of our overarching strategic research themes. We are delighted to be collaborating on the EpiSafe project, to ensure safer care and reduced risks for pregnant women with epilepsy. 
“Central to the work of the Epilepsy Research Institute is a culture of advocating and actioning the research priorities of people affected by epilepsy through our Shape Network PPIE group. Members of the network have been pivotal in the development of this programme of research, and we look forward to their continued involvement as this important project progresses.”  

At yesterday’s launch event, people affected by epilepsy and researchers explained how important this project will be to ensure that women across the UK get a say in managing their epilepsy during pregnancy. The event was hosted by Baroness Julia Cumberlege, who also chaired the ‘First Do No Harm’ report on the harmful side effects of some medicines including sodium valproate.  

Baroness Cumberlege said: 
“Being pregnant is a very important stage for every woman, conscious that if all goes well she is bringing new life into the world. The EpiSafe programme is crucial in creating evidenced-based pathways which must ensure the voices and experience of women directly shape solutions. The success of this programme will only be realised if there is meaningful collaboration between researchers, clinicians, and women with epilepsy and their families. Cooperation is vital to spur change. 

“All those involved in the care of pregnant women have a duty to safeguard the wellbeing of all mothers with chronic health needs. I will follow the progress of innovations borne from initiatives such as this closely, and with the help of others advocate tirelessly for their swift translation into enhanced standards of care.” 

Find out more about the EpiSafe project here.

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