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Campaign launched to raise £20 million research investment into anti-seizure medication for pregnant women

“Key to achieving better outcomes for women and their babies, is the imperative to work together through multicentre, multidisciplinary collaborations in research.

The Epilepsy Research Institute supports a campaign launched by Epilepsy Society yesterday evening at the House of Lords, calling for a £20 million investment in research into anti-seizure medication for pregnant women.  Our knowledge of risks associated with sodium valproate has accumulated slowly over time and has been underpinned by the significant investment made by the Epilepsy Research Institute.

We now know valproate carries a 10% risk of major malformations and a 30-40% risk of developmental symptoms. The decline in prescribing the drug to expectant women occurred after decades of use, where countless babies were born with preventable causes of physical and learning disabilities. Change happened, but not soon enough. And lessons from this need to be learned.

Certain anti-seizure medications cause neurodevelopmental symptoms and malformations in babies when they are exposed in utero. But we do not understand the mechanisms by which these harms occur or how to mitigate them. Nor do we understand the potential for risk posed to children fathered by men taking anti-seizure medications, or if there are transgenerational effects.

For people living with epilepsy, deciding to start a family can still cause great anxiety and stress. We need to better understand the mechanisms by which anti-seizure medicines cause harm to the babies. To fully remove the burden of anxiety, and the risk to future generations, we must develop strategies and newer treatments that prevent that harm.

Reproduction & Hormones is one of four key strategic themes of the Epilepsy Research Institute and is in direct response to the priorities of people affected by epilepsy, as evidenced in the UK Epilepsy Priority Setting Partnership we funded and led in 2021/22.  Each theme lead is supported by a task force group of leading UK scientists and clinicians. The research themes are driving a programme to secure large-scale research investment which will feed into an overall roadmap for research into epilepsy.

Through the Reproduction & Hormones programme theme,  the Institute will enable those living with epilepsy to make fully informed decisions on their treatment, but also have options for treatments that we know will not cause any severe congenital malformations or cognitive impairments.

Professor Tony Marson, Programme Director at the Epilepsy Research Institute said:

“It is vital that we work collaboratively across the UK and with international partners to undertake and deliver the research that will enable minimising risk to both people with epilepsy and their children.  That will include providing reliable estimates of risks, and a better understanding of women and men’s preferences to inform risk benefit considerations and treatment decisions.”

Dr Rebecca Bromley, Reproduction & Hormones Theme Lead at the Epilepsy Research Institute said:

“Enhancing the UK research landscape on this topic is critical if we are going to reduce the latencies we currently experience between the onset of a medications use and comprehensive data regarding its risk and safety profile.”

Maxine Smeaton, Chief Executive at the Epilepsy Research Institute said:

“Key to achieving better outcomes for women and their babies, is the imperative to drive multicentre, multidisciplinary approach to research.  The Epilepsy Research Institute is central to convening and coordinating both a national and global initiative on this work.”

Reproduction & Hormone Theme Priorities

  • Identify the risk of anti-seizure medications causing congenital malformations or neurodevelopmental outcomes in babies born to parents taking them. This will require a comprehensive collaboration across the UK bringing together multidisciplinary reserachers, clinicians and people with lived experience.
  • Better understand the mechanisms by which anti-seizure medications cause harm to the reproductive system, and develop strategies and new ways of preventing that harm. Alongside this, we will seek to identify any risk of transgenerational effects.
  • Discover the mechanisms by which anti-seizure medications cause harm to the developing child and develop strategies and new ways of preventing that harm.
  • Understand the longer-term consequences of epilepsy and its treatment on reproductive health, including menopause and bone health.
  • Enable informed treatment choices to be made by understanding people affected by epilepsy’s preferences and perception or risk associated with anti-seizure medications, and how benefits and harms are traded off in order to make treatment decisions.

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