Summary

The EP ID Register study aims to learn how epileptic medicine works for people who have epilepsy and a learning disability. The information will help other people when they need new medicine for their epilepsy.

What is the study about?

The EP ID Register study wants to learn how medicine works for people who have epilepsy and a learning disability. Epilepsy means a person has seizures. Seizures are sudden changes in the brain that can make someone shake or lose control for a short time. A learning disability means it can be harder for someone to learn new things or understand information.

What is the study trying to find out?  

The study aims to understand how epileptic medicines affect people with epilepsy and a learning disability. It focuses specifically on how the medicines impact the intensity and frequency of seizures. The finding will be compared information collection for people with epilepsy who do not have a learning disability.

What does taking part involve?

1. Discussing the study with a researcher
2. Signing a consent form
3. A researcher will then collect some information from your medical records.

Who is it for?

If you have epilepsy and a learning disability and

• You have been prescribed a medication for treating epilepsy
• Or you have taken them in the past.

Then we would like to hear from you

We hope to find around 1,500 people across England to take part.

Why is it important?  

Epilepsy affects 2-5% of the general population. Among them, epilepsy is more common for people with a learning disability. People with a learning disability also more commonly have other health problems and can respond to medication differently. Currently, there is no way of effectively evaluating the safety of anti-epileptic drugs (AEDs) for people with epilepsy and a learning disability. About 30% of all people with epilepsy continue to have seizures even if they take the medicines.

The study will develop a register of people with or without a learning disability who are taking AEDs. The information collected from the register will form databases. The databases could help confirm the safety of AEDs already being used and show if new AEDs are more or less helpful when they are available.   

We hope that this study will help people when they need medicine for their epilepsy.

How can I find out more? 

You can find out more information about taking part in this study by downloading the key documents at the top of this page.  

If you are interested in taking part in this study, or have questions for the research team, please email us using the link below:

r&d@nelft.nhs.uk