My name is Philippa Rees; I’m a paediatrician planning to undertake a PhD studying what happens to children after getting brain infections like meningitis around the time of birth.

There are many unanswered questions about what happens to children after experiencing a neonatal brain infection and how the NHS and schools can best support children and their families.  That’s why I have developed this project, to explore how children with neonatal brain infections do in terms of their long term health and how they do at school. I hope to do this by looking at anonymous electronic medical and school records to see how these babies and growing children progress after they leave the neonatal unit.

I need your help, as experienced parents and patients who have experienced brain infections in childhood , to steer my project and therefore would be very grateful for your thoughts so that I can make sure that I’m asking the right research questions and answering them in the best way. Thank you for taking the time to read this and for your help.

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* 1. Are you a parent, child or young person who has been affected by brain infections in childhood?

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* 2. I will link several different datasets to make a complete health and school record for all babies with brain infections up to the age of 12. Using anonymous records means researchers never know any identifiable personal details of individual children. This is much cheaper than face-to-face research, it does not intrude on family’s lives, and it gives us information about the whole population (all children) with brain injury in England.

Would you be happy for researchers to use your child’s electronic medical and school records for this reason, without individual consent, if they were always anonymous (i.e. no personal identifiable information was available) and if they had ethical approval?

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* 3. We will never have identifiable personal details of individual children. But some of the information we want to look at is classed as "sensitive" like whether a child has special educational needs.
Is this ok? Would you be happy for researchers to use you/ your child's completely anonymous sensitive information for this reason? 

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* 4. Do you think that using medical records is an acceptable way to look at survival/ how many babies with brain infections die in childhood?

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* 5. Is there anything you think I should consider in relation to this?
For example, what, as someone who has experienced childhood brain infections would you want to know in relation to using data to understand child mortality?

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* 6. Do you think that using medical and school records is an acceptable way to look at the health and educational challenges facing these children at a population level (i.e. all children in the country), without intruding on families' and children's lives?

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* 7. Is there anything you think I should consider in relation to this? For example as someone with experience of brain infections in childhood, what would you want to know in relation to using data to understand health and educational outcomes?

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* 8. What questions would you want answered if you/ your child had a neonatal brain infection? What outcomes would be important to you?

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