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Cerebral palsy pilot study primary school information leaflet

The NeuralNET: Research to impact diagnosis, mechanistic understanding and treatment of children's brain and mental health disorders – a pilot study in cerebral palsy.

Information to be read and discussed with children at primary school level.

We would like to ask you to take part in a research study called the NeuralNET Cerebral Palsy Pilot Study.

What is a research study?

A research study is when we try to find out more about something so we can understand it better.

Why are we doing this research study?

This research study is asking if a special type of test called a ‘genetic test’ can help us find out why some children have cerebral palsy.

What is a genetic test?

Everyone’s body is made up of billions of cells. In every cell there is a set of instructions for how our bodies look and how they work.

Sometimes there can be a change in a person’s instructions that causes a difference with how their body works. A genetic test is when a scientist looks to see if a person has a change in their instructions that might cause them to have a certain health condition, such as cerebral palsy.

Why did you ask me?

You have been asked to take part in this study because you have cerebral palsy. We hope that 66 children with cerebral palsy will take part in this study.

Do I have to take part in the study?

No, you do not have to take part in the study if you do not want to. We will ask you on another piece of paper if you would like to take part. You don’t have to say yes, and if you say yes today you can still change your mind at any time.

What will happen if I take part?

If you take part, we will need to collect a small blood sample from you (this means having a small needle prick to get some blood). This might hurt a little bit, but we can give you some special spray or cream to make sure you can hardly feel it.

Do I have to do anything else in the study?

No, you don’t need to do anything else, but we will ask your mum or dad or guardian to answer some questions about you and how they feel about the genetic test. We might also collect a small blood sample from them, too.

How will taking part help?

If you take part in the research study, your result might give us more information about your diagnosis of cerebral palsy that could help you or your family.

However, even if your result is not able help you or your family directly, the information from genetic tests in children like you with cerebral palsy might be able help other children with cerebral palsy in the future.

Will anyone know I’m taking part?

Only your parents, your doctor and the hospital team looking after you, and the people in our research team will know you are taking part.

All the information we collect is stored in a safe place and only the people doing the research study can look at it.

Who can I ask if I want to find out more about this study?

If you or your family have any questions, you can contact us at any time. You can email Emily Li or Heather Pierce at cuh.neuralnetstudy@nhs.net or you can call us at 01223 768614.

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This patient information leaflet - IRAS 317981_NeuralNET CP Pilot Study Child (Primary School) PIS_v2.0 _27.01.2023 has been converted to a web page.