Who can participate in the study?

All children and young people living in Scotland under 16 years of age who have been diagnosed with epilepsy on, or after, 1st March 2025.

What does the study involve?

The study involves the research team looking at your medical records to learn about your seizures, epilepsy treatments, and epilepsy test results. You will be sent some questionnaires asking about you and your epilepsy. There is an optional blood test.

How do i register to participate in the study?

Please complete this form and our team will be in contact with you.

Where are the study information sheets and consent forms?

Once you have completed the PARTICIPATE form, the EPI-SCOT team will be in contact with your/your child’s epilepsy doctor to check that you/they are eligible to participate. This doctor will then send you the study INFORMATION SHEET and CONSENT FORM. These will be sent electronically using a hospital patient information system called vCreate Health. If you are not already registered with vCreate Health then your epilepsy doctor will invite you to register. Once you have read the INFORMATION SHEET you will be asked to provide consent electronically.

What if i would rather complete a paper consent form?

Paper versions of the study INFORMATION SHEETs and CONSENT FORMS can be used instead of the electronic ones. Either ask for these when you complete the PARTICPATE form or ask you own epilepsy team for them. There will be copies in all the epilepsy clinics.

Do i need to inform my/my child’s doctor?

No, we will do this. We will need to contact the doctor responsible for you/your child’s epilepsy care. We will ask them to provide details about your/your child’s epilepsy. We also need to let your/your child’s general practitioner know that you/they are participating the study.

Are any new medicines or treatments being trialled in this study?

No, the EPI-SCOT study will not be testing new treatments. We are interested in studying the effects of treatments that are currently being used by doctors. All patients in the study will receive their usual care. Some patients in the study might be invited to take part in other trials of epilepsy treatment but these will involve separate information sheets and consent forms. You can be in the Epi-SCOT study as well as other studies.

What questionnaires will i be sent?

Participants in the EPI-SCOT study will be sent four different questionnaires. One asks about you learning/development, one asks about your feelings/emotions, one asks about your quality of life, and one asks about your seizures and epilepsy treatment. All these questionnaires can be completed electronically, but paper versions are available is you ask for them. Questionnaires can be completed by patients themselves, or by their parents/carers.

What about the blood test?

The blood test is optional, so you can be in the study even if you don’t want to do this part. We would like to store some samples for future research into causes of epilepsy. Participants who give samples for this part of the research will not be able to be tracked back to the samples (i.e. they will be anonymous).

I have another question.

Please send any other questions to the study team here, and we will get back to you.