An Observational Study of Epilepsy: Biology and Outcomes Using Real-world Data
This study, based in South Wales, is looking to understand epilepsy in more detail. Researchers will use existing health information and ask for blood samples from routine clinic visits, for people already receiving care for their epilepsy through the NHS at Cardiff & Vale University Health Board. The aim is to learn more about the different ways epilepsy shows up, its causes, and how it develops over time. This research will not change your normal medical care or require extra hospital visits. It's about collecting data to help improve our understanding of epilepsy for the future.
At a glance
What is this study about?
This study is called 'An Observational Study of Epilepsy: Biology and Outcomes Using Real-world Data'. It's not a trial where doctors test new medicines or treatments. Instead, it's an 'observational study', which means the researchers will carefully watch and gather information about epilepsy in a real-world setting, as people go about their usual NHS care. They want to understand why epilepsy affects people in different ways and how it changes over time.
The main goal is to explore things like the different symptoms people with epilepsy have, genetic factors (related to your family history), chemical changes in the body, brain activity, and what brain scans show. By looking at all this information together, they hope to get a much clearer picture of epilepsy, which could eventually lead to better ways to understand and manage it.
This study is important because it uses information from thousands of people already receiving epilepsy care in South Wales. By gathering and analysing this information, alongside a small additional blood sample from some volunteers, scientists can look for important patterns and connections. This could help them identify factors that predict how epilepsy might develop in different people, or how well certain treatments might work.
Key takeaways
- This is an 'observational' study, not a treatment trial.
- Your standard epilepsy care will not be affected.
- Participation involves sharing existing health data and possibly a blood sample during routine visits.
- It aims to improve understanding of epilepsy for future patients.
- You won't need extra hospital visits.
- You can withdraw from the study at any time without affecting your care.
Who may be eligible?
To join this study, you need to be an adult (age 16 or older) who is currently receiving care for your epilepsy. Specifically, you must be a patient at the epilepsy unit at Cardiff & Vale University Health Board or a regional clinic in Cwm Taf.
There are no other specific health reasons that would stop you from taking part, meaning most people who meet the criteria above could be included.
If you are interested, the most important step is to understand the study and agree to take part by giving your informed consent.
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?
- Are you receiving care for epilepsy at Cardiff & Vale University Health Board or a clinic in Cwm Taf?
- Are you willing to give your agreement (consent) to take part?
- Are you comfortable with researchers using your existing health records?
- Are you okay with possibly providing a blood sample during a routine clinic visit?
What does participation involve?
If you choose to take part in this study, your normal medical care and treatment for epilepsy will not change at all. You won't need to make any extra visits to the clinic or hospital just for the study. Everything will happen during your routine NHS appointments.
The main thing you would be asked to do is to give your permission for the researchers to use information from your existing health records, which has been collected during your standard care. Additionally, you would be asked if you are willing to give a blood sample during one of your routine clinic visits. In very specific situations, if you are already having brain surgery or a lumbar puncture (spinal tap) for your epilepsy care, you might be asked if surplus tissue or fluid could also be used for research. You might also be asked for hair, nail, or urine samples in some cases, but this is less common.
There is no set total duration for your participation; it simply involves allowing researchers to access your information and, if you agree, providing samples during your ongoing care.
Potential risks and benefits
Locations (1)
- Cardiff and Vale UHBVerified postcodeCardiff, United Kingdom· Recruiting
Common questions
Will my usual epilepsy treatment or care change if I join this study?
No, your normal medical care and treatments for epilepsy will stay exactly the same. The study will not affect how your doctors treat you.
Do I need to make extra hospital visits to take part?
No, you will not need to make any additional visits to the hospital or clinic specifically for this study. All study activities will happen during your routine appointments.
What information will the researchers collect about me?
They will use information already collected in your health records during your standard care, such as details about your epilepsy, treatments, and test results. They may also ask for a blood sample during a routine visit.
Will my personal details be kept private?
Yes, all your information will be handled with strict confidentiality. Your name will not be linked to the study findings when they are shared.
Can I change my mind and leave the study later?
Yes, you are completely free to withdraw from the study at any time without needing to give a reason. This will not affect your medical care.
How to find out more
Khalid Hamandi
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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