RecruitingOBSERVATIONAL

SCN1A Horizons A Natural History Study of SCN1A-related Epilepsies in the United Kingdom

This study, called "SCN1A Horizons," is focused on understanding how epilepsy linked to changes in the SCN1A gene, including Dravet Syndrome, affects children and adults in the UK. Over a period of three years, researchers will carefully observe how seizures, learning abilities, behaviour, and movement change over time. They are particularly interested in seeing if different types of SCN1A gene changes affect these aspects differently. This information is crucial for developing and testing new treatments, as it helps us understand the disease's natural course and whether new therapies are truly making a difference in people's lives.

At a glance

Status

Recruiting

Sponsor

NHS Greater Glasgow and Clyde

Enrolment target

400

Start

20 Nov 2023

Estimated completion

01 Jun 2026

SCN1A Dravet Syndrome Epilepsy

What is this study about?

This study, called "SCN1A Horizons," is all about understanding a type of epilepsy linked to a specific gene called SCN1A. This includes a serious condition called Dravet Syndrome. The researchers want to learn more about how these conditions affect children and adults in the UK over a three-year period. They will be looking closely at things like how often seizures happen, how people's learning and development progress, and any changes in behaviour.

A key part of the study is to see if different kinds of changes in the SCN1A gene lead to different experiences with the condition. For example, some people might have a small change in the gene, while others might have a larger one. The study aims to compare these groups to see if their seizures or development progress differently. This kind of detailed observation helps doctors and scientists understand the condition better.

Ultimately, the goal is to gather vital information that will help in developing better treatments and care in the future. By really understanding how the condition usually develops over time, including its effect on daily life and learning, researchers can figure out if new medicines or treatments are truly helping people and making a positive impact on their lives.

Key takeaways

This study helps us understand SCN1A-related epilepsies over time.
It focuses on seizures, development, and behaviour.
It will compare experiences based on different SCN1A gene changes.
Information gathered will help develop better future treatments.
Participation involves observation over three years, not new medicines.
You won't get a direct treatment benefit, but your contribution is valuable.

Who may be eligible?

To join this study, you or your child must have a confirmed change in the SCN1A gene that is known to cause disease. This would be shown through a genetic test.

It's important that you, and if it's for a child, their parent or guardian, are happy to take part and can follow the study instructions. This includes being able to do any virtual appointments that might be part of the study.

You wouldn't be able to join if you have another significant illness or condition that the study doctor thinks might make it unsafe for you to participate, or if it would make it hard for you to take part fully.

Quick self-check

Do I (or my child) have a confirmed SCN1A gene change?
Am I (or the parent/guardian) able and willing to attend virtual appointments?
Am I (or my child) generally healthy otherwise, apart from the epilepsy?
Am I willing to share health information for three years for research?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

This study involves observing you or your child over three years. It's a 'natural history' study, which means you won't be given any new medications or treatments as part of the study itself. Instead, researchers will regularly collect information about your health, including details about seizures, learning, behaviour, and movement skills. This will likely involve regular check-ups, which might be done virtually, to track any changes over time. The main commitment is attending these appointments and providing honest information about your or your child's condition.

Potential risks and benefits

Participating in this study won't offer a direct medical benefit like a new treatment, as it's an observation study. However, you'll be contributing important information that could help countless others with SCN1A-related epilepsies in the future by improving our understanding of the condition and guiding treatment development. The risks are very low, mainly involving the time commitment for appointments and sharing personal health information within strict privacy guidelines. You are always free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Royal Hospital for Children
Glasgow, United Kingdom· Recruiting

Common questions

What is an SCN1A-related epilepsy?

It's a type of epilepsy caused by a change in a specific gene called SCN1A, which includes Dravet Syndrome.

Will I receive new medicine as part of this study?

No, this study is about observing the condition as it naturally progresses, not testing new medications. Your current treatment will not change.

How long will I be in the study?

The study will follow participants for a period of three years.

What kind of information will the researchers collect?

They will collect information about your or your child's seizures, learning and development, and behaviour, potentially through appointments and questionnaires.

Is travel to clinics required?

Some visits might be virtual, meaning you can do them from home, but this would be discussed with you.

How to find out more

Kirsty Hendry, PhD

SCN1AHorizons@glasgow.ac.uk 0141 451 5888 Official trial record

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