Improving outcomes in adults with epilepsy and intellectual disability

Healthcare professionals are always looking for ways that they can improve the lives and health of their patients, including research studies. Below are details of a study currently looking for volunteers.  Please use the contact details at the end of the page for more information.

Study title:

Improving outcomes in adults with epilepsy and intellectual disability:A cluster randomised controlled trail of nurse-led epilepsy management (EpAID)


Nearly a million adults in England have an intellectual disability (ID). Epilepsy is the most common medical illness in this group, occurring in around 26%, with even higher rates in those with more severe ID. It has a worse outcome than epilepsy in the general population, with more seizures, more multiple antiepileptic drug use and side effects, higher treatment costs and higher illness and death rates. In adults with ID and epilepsy there are suggestions that improvements may follow introduction of epilepsy nurse (EN)-led epilepsy care.

However, this has not been tested in a study. Results cannot be generalised from general population studies given the more severe epilepsy and additional clinical problems of adults with ID.

What is the aim of the study?

The primary objective of this study is to establish whether nurses with expertise in epilepsy and intellectual disabilities (ID) can improve clinical and quality of life outcomes in the management of epilepsy in adults with (ID) compared to treatment as usual.

The main secondary objective will be to establish whether any perceived benefits represent good value for money.

Further information on this study is listed on the UK Clinical Research Network Study Portfolio website.

How can I get involved?

Recruitment for this study has now ended.  However, if you would like more information about the study or getting involved in future studies please contact or