In 2022, the Epilepsy Research Institute led the UK Epilepsy Priority Setting Partnership (PSP), in partnership with the James Lind Alliance and the National Institute for Health and Care Research (NIHR). This initiative brought together the entire epilepsy community to identify the top ten priorities for epilepsy research.
The impact of hormonal changes experienced throughout a women’s life and the impact this has on epilepsy was identified as one of these priority areas. In response to this, the Reproduction & Hormones theme, led by Clinical Co-Leads Dr Rebecca Bromley and Dr Janine Winterbottom, and Early Career Lead, initially Dr Faye McLeod and latterly Dr Amy Richardson, was created. In this feature, we share the progress the theme has already made to drive research into this important and often overlooked area.
Hormones and epilepsy: Building international collaboration within the field
In May 2025, the theme held a Hormones and Epilepsy workshop to identify knowledge gaps in current research, establish research priorities, and create an informed and connected community. The workshop brought together experts from diverse backgrounds, including UK-based and international epilepsy researchers, clinicians, and people with lived experience.
The discussions and outcomes from this collaborative workshop have been captured in a manuscript, due to be submitted later this year. The priorities cover a range of topics from catamenial epilepsy and pregnancy to the relationship between reproductive hormones and anti-seizure medications (ASMs). Following on from the workshop, objectives for the theme were established to address these research priorities.
Further recognising the importance of global collaboration, the theme leads and other experts in the field have established the Hormones and Epilepsy Research Association (HERA) – an international network connecting researchers, chaired by Dr. Amy Richardson and Dr. Emily Pegg.
The Association will enable researchers to share recent findings and unpublished data and discuss opportunities for collaboration. HERA also aims to support early career researchers and facilitate collaboration through laboratory-exchange opportunities, connecting researchers from different disciplines to epilepsy research.
If you’re a researcher and would like to be kept informed about HERA’s work, please email your interest to [email protected] and look out for HERA’s call for members later in 2026.
Reproduction and epilepsy: reducing risk in pregnancy
For many people with epilepsy, decisions around family planning can be particularly challenging due to the lack of research and information available around taking anti-seizure medication during pregnancy.
Anna Prideaux, Founding Funder and Trustee of the Epilepsy Research Institute, has shared in a blogpost how the lack of research into the effects of anti-seizure medication during pregnancy left her with the decision between risking her own health or the potential risk to her unborn child. Anna comments that “this is an awful predicament for any pregnant woman and is why I think research into reproduction & hormones is incredibly important.”
Clinical Theme Lead, Dr Janine Winterbottom also emphasises the importance of research in supporting women to “feel empowered to make informed reproductive decisions, including planning to start a family, at a time in life where the links between hormones, pregnancy and epilepsy can have greatest influence.”
To drive research into this area, the theme plans to host a dedicated pregnancy workshop in early 2027, covering all aspects of epilepsy in pregnancy, including pre-conception and the impact of anti-seizure medication on reproduction.
Alongside this, the Theme Leads have been working with the wider epilepsy research community as part of the Reproductive Risk Consortium. The Consortium has brought together experts in the field to build a programme of research focused on reducing the risks during the reproductive years for people with epilepsy.
The Consortium’s work responds directly to the recommendations from the Independent Medicines and Medical Devices Safety Review, which highlighted the urgent need to improve how we generate, share and act on evidence relating to medicine safety in pregnancy. The Reproductive Risk Consortium is working to tackle these challenges and improve outcomes for people with epilepsy and their families.
The Consortium is currently working on a major funding application planned for spring 2027. The proposed research focuses on maternal and parental health risks, and the impact of anti-seizure medication on child development and long-term outcomes.
Priority Setting Partnership (PSPs)
A process which brings together clinicians, patient groups and people affected by epilepsy to identify and prioritise areas of healthcare that can be improved by research.
James Lind Alliance
A non-profit making initiative, established in 2004. It brings people affected by epilepsy and clinicians together in priority setting partnerships to highlight the top ten most important areas of research.
Reproductions & Hormones theme
The Reproduction and Hormones theme is one of six themes created by the Epilepsy Research Institute to address the PSPs’ top ten priorities. This theme focuses on epilepsy and anti-seizure medications, and their relationship with hormones and reproductive health.
Manuscript
A written document that reports results from research to be submitted to a peer-reviewed journal. When it has been accepted by a journal it becomes known as a ‘paper’.
Catamenial epilepsy
A pattern of seizures aligned with a person’s menstrual cycle, where the frequency or intensity of seizures may worsen either just before or during their period, during ovulation or during the second half of their cycle.
Independent Medicines and Medical Devices Safety Review
Also known as the Cumberlege Review, this review looked at the use of anti-seizure medications in pregnancy, and was informed by people living with epilepsy, campaigners and healthcare professionals.
The Reproductive Risk Consortium
An association of experts formed to improve safety in people living with epilepsy and their offspring.
