The CHERuB Study
The CHERuB study compares long-term health and school outcomes of children born with brain injury (2008–2019) to those without, using anonymised NHS and school records across England.
What are we trying to do?
This is a large study of children who had a brain injury around the time of birth between 2008 and 2019. The aim of this study is to compare the long-term health and school results of children born with brain injury around the time of birth with similar children born without a brain injury.
Every year more than 3,400 babies in England suffer a brain injury around the time of birth. These brain injuries can be caused by a lack of oxygen at birth, bleeding into the brain and infections like meningitis. They can have lifelong effects for children and their families. Understanding why brain injuries happen and finding out how we can stop them happening around the time of birth is a government priority. The government wants to make the UK ‘the safest place in the world to have a baby’.
We would like to understand the long-term impact of brain injuries on children and find out the best way to support children and families. This means that we need to gather information about the longer-term effects on children’s lives. We are interested in physical health, mental health, and how well children with brain injuries manage at school. The results of this research will allow families to plan for the future and for health and educational services to support affected children to reach their full potential.
To get a complete picture of how children and families lives are affected by brain injury we need to look at information and records from a lot of children. It’s possible to do this in the UK as we have electronic NHS and school records for children in England.
We will use information about all children born in England between 2008 and 2019 that were admitted to a neonatal unit and had a brain injury around the time of birth. We will ‘match’ these children with similar children born around the same time without brain injury. We will look at how children develop at home and school until they are 13 years old. This will include around 170,000 children. We will get this Information from:
- NHS medical records (the neonatal electronic medical record, hospital records of care, mental health records of care in the hospital or community)
- Birth and death registration records
- School and social care records (including information national test scores, special educational needs and school attendance)
The information from these records will be linked together by independent and trusted NHS and government organisations that have lots of experience of running studies using patient data. The data will be kept secure within these organisations. All information that could be used to identify children, such as NHS number, date of birth, name, and postcodes, will be removed before researchers can access the data. At no point will researchers have access to identifiable information about the children included in this study.
The ‘data controller’ under the General Data Protection Regulation (GDPR) is responsible for what happens to data. The joint data controllers for the data analysed in this study are University College London and Imperial College London. If you would like more information about how we handle data for this study please email Dr Philippa Rees (p.rees@ucl.ac.uk).
No, this is not possible. The study will include around 170,000 children born between 2008 and 2019. We will not have any identifiable information for these children such as contact details, so it would not be possible for us to contact parents to ask if we can use the information about their child. This is why we have applied for special permission to access these records.
You can opt out of sharing your babies’ or child’s data with the National Neonatal Research Database at any time. Please talk to the neonatal unit staff if you would like to opt out of data sharing. You can also have your babies’ data removed from the National Neonatal Research Database at any time by emailing the Data Protection Officer at dpo@imperial.ac.uk.
Some individuals have also opted out of national health data sharing on the NHS website. More information about the NHS and your data can be found at https://www.nhs.uk/your-nhs-data-matters/.
If you have opted out of data sharing before the study data linkage begins your data will not be included in this study. Once the study team receives the data we will not be able to identify individual children because all identifiable information will have been removed. This means study team will be unable to exclude children at this point. For more information about data sharing and the national opt-out please visit the Neonatal Data Analysis Unit and NHS Digital websites.
The study results will be published in scientific journals and on the UCL and Neonatal Data Analysis Unit websites. The results will be shared with parents, doctors who care for children and organisations and charities who work with children and families. The results of the study will help us plan how children with brain injuries should be followed-up in the NHS. We will work with parents to develop these recommendations. This will provide important information for doctors, teachers, and parents about what difficulties children with brain injury might face and what kind of support they might need.
These results will be used on neonatal units across the country to help counsel parents about what the future might look like for their child with brain injury.
To make a complaint about how we have handled personal data you can contact our Data Protection Officer (data-protection@ucl.ac.uk) who will investigate. You can also make a complaint with the Information Commissioner’s Office (ICO) if our response is not satisfactory.
Please contact Dr Philippa Rees for further information: p.rees@ucl.ac.uk
Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study
Bache A, Sutcliffe A, Lemmon ME, Williams C, Gale C, Land S, Rees P. Arch Dis Child Fetal Neonatal Ed. 2025. Published Online First: 13 October 2025. doi: 10.1136/archdischild-2025-329374
School outcomes after HIE: a population-based cohort study.
Rees P, Dronavalli M, Carter B, Bajuk B, Burns L, Dickson M, Eastwood J, Hossain S, Lawler K, Lee E, Munasinghe S, Page A, Uebel H, Dicair L, Green C, Gale C, Oei JL.Arch Dis Child Fetal Neonatal Ed. 2025 Jun 8:fetalneonatal-2024-328346. doi: 10.1136/archdischild-2024-328346. Online ahead of print.
Intraventricular Hemorrhage and Survival, Multimorbidity, and Neurodevelopment.
Rees P, Gale C, Battersby C, Williams C, Carter B, Sutcliffe A.JAMA Netw Open. 2025 Jan 2;8(1):e2452883. doi: 10.1001/jamanetworkopen.2024.52883.
Rees P, Gale C, Battersby C, Williams C, Purkayastha M, Zylbersztejn A, Carter B, Sutcliffe A.BMJ Open. 2024 Aug 19;14(8):e089510. doi: 10.1136/bmjopen-2024-089510.
Rees P, Callan C, Chadda KR, Diviney J, Harnden F, Gardiner J, Battersby C, Gale C, Sutcliffe A.Dev Med Child Neurol. 2024 Mar;66(3):282-289. doi: 10.1111/dmcn.15713. Epub 2023 Jul 24.
School-age outcomes of children after perinatal brain injury: a systematic review and meta-analysis.
Rees P, Callan C, Chadda K, Vaal M, Diviney J, Sabti S, Harnden F, Gardiner J, Battersby C, Gale C, Sutcliffe A.BMJ Paediatr Open. 2023 Jun;7(1):e001810. doi: 10.1136/bmjpo-2022-001810.
Preterm Brain Injury and Neurodevelopmental Outcomes: A Meta-analysis.
Rees P, Callan C, Chadda KR, Vaal M, Diviney J, Sabti S, Harnden F, Gardiner J, Battersby C, Gale C, Sutcliffe A.Pediatrics. 2022 Dec 1;150(6):e2022057442. doi: 10.1542/peds.2022-057442.
