CompletedObservational

Exploring cannabidiol’s impact on behaviour in adults with intellectual disabilities and epilepsy (CANABID-LD)

The CANABID-LD study is exploring if a seizure medicine called Epidyolex (also known as cannabidiol) can help adults who have both an intellectual disability and specific types of epilepsy (Dravet syndrome, Lennox-Gastaut syndrome, or tuberous sclerosis complex) to manage challenging behaviours. These behaviours can be tough to deal with and impact daily life. Epidyolex is already approved for seizure control in these conditions, but researchers want to see if it also improves behaviour and quality of life. Participants will be those about to start Epidyolex, and the study will observe them over six months without changing their usual care. The aim is to gather information that could improve future treatments for people like them.

At a glance

Status

Completed

Sponsor

University of Plymouth

Enrolment target

Start

10 Oct 2025

Estimated completion

30 Apr 2026

Adults with Intellectual Disability with Lennox-Gastaut syndrome, Dravet syndrome and tuberous sclerosis complex

What is this study about?

Some people with epilepsy also have an intellectual disability, which can make everyday tasks, learning, and talking with others more difficult. Certain types of epilepsy, like Dravet syndrome, Lennox-Gastaut syndrome, and tuberous sclerosis complex (TSC), often come with both an intellectual disability and challenging behaviours. These behaviours can be very hard to manage and can affect a person's safety and how well they live their life. Currently, there aren't many effective medicines to help with these specific behaviours.

Epidyolex, also known as cannabidiol, is a medicine that is already approved for helping to control seizures in people with Dravet syndrome, Lennox-Gastaut syndrome, or TSC. This study, called CANABID-LD, wants to find out if Epidyolex might also help to reduce those challenging behaviours and improve a person's overall quality of life. It's an important question because finding ways to manage these behaviours could make a big difference to people and their families.

This study will simply observe people who are already going to start taking Epidyolex for their seizures. It won't involve giving new medicines or changing anyone's usual care. By carefully watching how people's behaviours and quality of life change after starting Epidyolex, researchers hope to learn if this medicine offers more benefits than just seizure control. The information gathered could help doctors make better decisions about treatment in the future.

Key takeaways

The study looks at Epidyolex for challenging behaviours in specific epilepsies.
It involves adults (16+) with intellectual disability and Dravet, LGS, or TSC.
Participants must be about to start Epidyolex for seizures.
It's an observational study – no new medicine or extra appointments.
Information is collected remotely over six months with a caregiver's help.
Aims to improve future care for people with similar conditions.

Who may be eligible?

This study is looking for adults who are aged 16 or over. You must have a confirmed diagnosis of an intellectual disability, along with one of these specific epilepsy conditions: Dravet syndrome, Lennox-Gastaut syndrome, or tuberous sclerosis complex.

Crucially, you should be about to start taking the medicine Epidyolex (cannabidiol) for your seizures, but haven't started it yet. You also need to be receiving care from specialist NHS services. A caregiver who knows you well must be willing to help with the study by sharing information about your health.

Unfortunately, you can't join if you have already started or were previously taking Epidyolex. If you're unsure whether you fit these criteria, your doctor or care team can advise you.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 16 years old or older?
Do you have a diagnosis of intellectual disability and Dravet syndrome, Lennox-Gastaut syndrome, or tuberous sclerosis complex?
Are you about to start taking Epidyolex for your seizures, but haven't started it yet?
Do you have a caregiver who is willing to help with the study?
Are you currently receiving care from specialist NHS services for your condition?

Answer every question to see your result.

What does participation involve?

If you decide to take part, your participation will last for six months. This is an observational study, which means you won't be asked to take any additional medication or change your ongoing treatment. You will continue to receive your usual care from your doctors.

Researchers will collect information at three points: when you start the study (before you begin Epidyolex), after three months, and again after six months. All data will be collected remotely, meaning you won't need to visit a clinic specially for the study. Your caregiver will play a key role in helping to provide information about your behaviour, how often you have seizures, and your general quality of life. The total duration of your active involvement in the study will be six months.

Potential risks and benefits

There might not be a direct benefit to you personally from taking part in this study. However, the information gathered could greatly help improve future treatments and care for other people with epilepsy and intellectual disabilities. Because you won't be taking any extra medication or changing your current treatment, and no extra clinic visits are needed, the risks involved in this study are very small. You are free to withdraw from the study at any time, for any reason, without it affecting your usual medical care or relationship with your healthcare team.

Locations (10)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Swansea Bay University Local Health Board
City only
Neath, Wales
North Bristol NHS Trust
City only
Bristol, England
University Hospitals Birmingham NHS Foundation Trust
City only
Birmingham, England
Leeds Teaching Hospitals NHS Trust
City only
Leeds, England
University College London Hospitals NHS Foundation Trust
City only
London, England
Royal Free London NHS Foundation Trust
Unverified
London, England
Birmingham Community Healthcare NHS Foundation Trust
Unverified
Birmingham, England
University Hospitals of Leicester NHS Trust
Unverified
Leicester, England
The Walton Centre NHS Foundation Trust
Unverified
Liverpool, England
Royal United Hospitals Bath NHS Foundation Trust
Unverified
Bath, England

Common questions

What is Epidyolex?

Epidyolex is a medicine (also known as cannabidiol) that is approved to help control seizures in people with specific types of epilepsy.

Will I have to take a new medicine for this study?

No, you will not be asked to take any new medicine for this study. It observes those already starting Epidyolex as part of their usual treatment.

How long will the study last if I join?

Your participation in the study will last for six months.

Do I need to visit a hospital or clinic for the study?

No, all information for the study will be collected remotely, with help from your caregiver, so no extra clinic visits are needed.

Can I leave the study if I change my mind?

Yes, you can withdraw from the study at any time, and it won't affect your medical care.

How to find out more

Abbey Tufft

canabid.penctu@plymouth.ac.uk +44 1752 439831 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.