STOP EPILEPSY survey

Study title

STOP EPILEPSY: A survey about an idea to stop epilepsy

What’s it about?

There are no epilepsy-preventing medications. The antiepileptic (or antiseizure) medication we have can only reduce seizures in people who have already developed epilepsy. Researchers from the University of Liverpool are working to find a treatment that could be given to people after their first seizure, which could stop or slow down epilepsy. They are thinking about testing the treatment.

Before they do this, they want to hear what people affected by epilepsy think of it. The researchers are asking people with epilepsy and their family and friends to complete the quick ‘STOP EPILEPSY survey’.

Am I eligible to take part?

The researchers are looking for people with epilepsy and family members or friends of people with epilepsy to take part.

You can take part if you:

  • Have a diagnosis of epilepsy
  • Are aged 16 years or over
  • Are able to complete a survey in English by yourself
  • Do not have a terminal illness or severe psychiatric condition (e.g., schizophrenia)
  • Live in the UK

You can also take part if you:

  • Are a family member or friend of a person with epilepsy
  • Are over the age of 16
  • Are able to complete a survey in English by yourself
  • And the person you know lives in the UK

If a person with epilepsy is unable, or does not want to take part, a family member or friend can still take part.

What will I have to do?

You will be asked to do an online survey by yourself. It usually takes 10 to 15 minutes.

The survey will ask you some simple things about you and your connection with epilepsy.

You will then be asked to watch some quick videos that share important information about what current treatments for epilepsy do, and what treatment the researchers are thinking of testing. This will include asking you for your thoughts on starting medication after a first seizure.

You will answer questions by either ticking boxes alongside the answer that you choose, or in some instances typing in your answers.

How do I get involved?

If you are interested in taking part, please visit the study webpage (https://livpsych.eu.qualtrics.com/jfe/form/SV_8iWU047SDq9fc9w). There you will find more information about the survey and a link to take part. You will be asked to sign a consent form saying that you agree to take part.

Is there a deadline?

The researchers will close the survey once they have received enough responses to make sure they results are as accurate and as reliable as possible.

Who is conducting the research?

With Epilepsy Action’s support, the research is being conducted by researcher from the University of Liverpool, including Dr Adam Noble, Dr Nasir Mirza and Professor Tony Marson.

Who has reviewed this study?

This study has been reviewed and approved by the University of Liverpool’s Institute of Population Health Research Ethics Committee (Ref: 10779).

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