Multicentre Real-life Follow-up Study of Rare Epileptic Syndromes in Children and Adolescents
This study is gathering information about children and teenagers in the UK who have rare types of epilepsy, including conditions like West Syndrome and Dravet Syndrome. There isn't much known about what might happen in the future for children with these conditions, which makes it hard for families and doctors. This study aims to understand how different treatments work in real life and how these conditions affect a child's learning abilities and mental health over time. By collecting this information, doctors hope to get a clearer picture of these rare epilepsies. This will help them make better decisions about treatment, give more helpful advice to families, and potentially lead to new and more effective treatments in the future.
At a glance
What is this study about?
Imagine you have a jigsaw puzzle, but you're missing many of the pieces, and you don't even have a picture on the box to guide you. That's a bit like how doctors currently feel about managing some rare types of epilepsy in children and teenagers. While epilepsy is common, certain rare forms, like West Syndrome and Dravet Syndrome, are not well understood, especially regarding what to expect in the long run.
This study is stepping in to help complete that puzzle. It aims to collect 'real-life' information from children and teenagers with these conditions. Doctors want to see how different treatments work in everyday situations, not just in strict lab settings. They're also interested in understanding how these conditions affect other areas of a child's life, such as their learning, memory, and emotional well-being. At the moment, there isn't a single best way to treat these rare epilepsies, and approaches can vary between hospitals.
By gathering this detailed information from many different patients and hospitals, the study hopes to find patterns and answers that aren't currently available. This will help doctors give more accurate information to families, guide them on the best treatment options, and potentially develop new advice on managing these conditions. Ultimately, the goal is to improve the lives of children and teenagers living with these rare forms of epilepsy.
Key takeaways
- This study aims to improve understanding of rare epilepsies in children and teenagers.
- It collects information from routine medical care, not new treatments.
- The goal is to help doctors make better treatment decisions and give clearer advice.
- Participation will not change your child's medical care or treatment.
- Your child's information will be kept private and confidential.
Who may be eligible?
This study is looking for children and teenagers who have been diagnosed with a rare form of epilepsy. This diagnosis will have been identified using specific medical codes.
To join, the child's parents or legal guardians must agree for them to take part. Also, the child must be receiving care at one of the hospitals or clinics that are involved in this particular study.
Children or teenagers whose parents or guardians do not wish them to participate in the study will not be included. If the patient themselves is able to express their opposition, they also will not be included.
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.
- Does my child have a diagnosed rare epilepsy?
- Am I, as a parent or guardian, happy for my child to take part?
- Is my child currently being treated at a hospital or clinic involved in this study?
- Is my child under 16 years old?
What does participation involve?
This study is observational, meaning it won't involve new medicines or treatments. Instead, doctors will collect information from your child's regular medical appointments and check-ups. This includes details about their epilepsy, such as how often they have seizures and what treatments they're receiving. They'll also look at how their learning and behaviour might be affected over time. There won't be any extra visits or tests specifically for this study beyond what your child would normally have for their epilepsy care. The total duration of participation will depend on how long your child continues to be followed at a study centre.
Potential risks and benefits
Locations (11)
- CHU AngersVerified postcodeAngers, France· Recruiting
- CHU de BordeauxVerified postcodeBordeaux, France· Recruiting
- CHU de Brest - Hôpital de la Cavale BlancheVerified postcodeBrest, France· Recruiting
- CHRU LilleVerified postcodeLille, France· Recruiting
- HFME - HospiceS Civils De LyonVerified postcodeLyon, France· Recruiting
- Hôpital La Timone - APHMVerified postcodeMarseille, France· Recruiting
- Hôpital Necker - APHPVerified postcodeParis, France· Recruiting
- Hopital Robert Debré - NeurologieVerified postcodeParis, France· Recruiting
- CHU Strasbourg- Hôpital de HautepierreVerified postcodeStrasbourg, France· Recruiting
- Hôpital Purpan - CHU de ToulouseVerified postcodeToulouse, France· Recruiting
- CHU de Tours - hôpital ClochevilleVerified postcodeTours, France· Recruiting
Common questions
What is a 'rare epilepsy'?
A rare epilepsy is a type of epilepsy that only affects a small number of people. While epilepsy itself is quite common, there are many specific types, and some are much less common than others.
Will my child receive any new medication in this study?
No, this study is about observing and collecting information on existing treatments that your child is already receiving. It does not involve giving any new medicines or experimental treatments.
What does 'real-life data' mean?
Real-life data means collecting information from patients during their everyday medical care, rather than in a special, highly controlled research setting. This helps doctors see how treatments work in the real world.
Will my child's personal information be kept private?
Yes, all personal information collected for the study will be handled with strict confidentiality and in line with data protection laws. Your child's identity will be protected.
How long will my child be in the study?
Your child will be part of the study for as long as they are being cared for at one of the participating hospitals or clinics, allowing doctors to track their progress over time.
How to find out more
Blandine DOZIERES, Dr
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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