Our Journey
We are a group of doctors, nurses, psychologists, researchers and women with epilepsy who are interested in knowing how to make pregnancy as safe as possible for people with epilepsy and their babies. We are currently enrolling pregnant people with epilepsy to understand the health of their children and how they develop during childhood.
Statistics
600,000+
People in the United Kingdom (UK) affected by Epilepsy, which is a common neurological condition.
Most people with epilepsy, including people of childbearing years, will require long-term treatment with anti-seizure medications (ASMs) to prevent seizures.
3-4
Pregnancies
3-4 pregnancies in every thousand occur to people with active epilepsy. For women with epilepsy, an estimated 2,500 children are born to women with active epilepsy in the UK each year.
Although the considerations around pregnancy for a person with epilepsy are multiple, it is the potential effect of antiseizure medications on the developing baby that often raises the most concerns.
We are here to help with those concerns by undertaking research to understand the relative safety and risk profiles of the antiseizure medications. This information can then be provided to people with epilepsy and their health professionals to maximise the best outcomes for parents and their babies.
Our Journey
Set up in
Northern
Ireland
The UK Epilepsy and Pregnancy Register is a prospective, observational registration and follow-up study.
Set up in Northern Ireland in 1996, the aim was to improve understanding of medications administered to women with epilepsy. The goal is to offer enhanced guidance and support throughout their journey of planning and pregnancy.
1996
2000
UK-wide
The study went UK-wide in 2000.
Referrals come from a broad professional base such as neurologists, epilepsy nurses and midwives and also from mothers self-registering.
2016
Reached 11,000 registrants
Enrollment in this study reached an incredible milestone with over 11,000 women and their babies participating—a truly remarkable achievement.
A heartfelt thank you goes out to every one of them for their valuable time and commitment to our study.
Approach over the years
Women with epilepsy who become pregnant, whether or not they are not taking an ASM, a single ASM or any combination of ASMs have been encouraged to register early in the course of their pregnancy and before the outcome is known. Referrals have come from a broad professional base and mothers self-registering. Follow-up information has been collected from the women’s General Practitioner, three months after the expected date of delivery.
The initial purpose of the study was to look at defining the risk and type of major congenital malformations seen with each ASM, permitting the comparison of risks between drugs, in the hope of leading to better and more informed choices for women with epilepsy contemplating a pregnancy.
Our Current
Study
Over the years more questions have been raised in regards to the development of the baby as well as the impact on women with epilepsy. We are therefore extending our study to follow up with women and their babies for longer, learning about the development of the children.
Thank you to all the families and healthcare professionals who have contributed to our study to date.
11,000+
Women with epilepsy and their babies have enrolled to date but we are now on a new journey.
If you have a question please get in touch by completing the form below:
Join Our Study
We are currently enrolling pregnant people with epilepsy to understand the health of their children and how they develop during childhood.
Whether you are on antiseizure medications or not, you are welcome to take part.
You can read the full information sheet by clicking HERE.
Funded and Supported By:
