Childhood outcomes after perinatal brain injury v1
Research type
Research Study
Full title
Childhood outcomes after perinatal brain injury: a population-based linkage study
IRAS ID
280738
Contact name
Philippa Rees
Contact email
Sponsor organisation
Joint Research Office, Great Ormond Street Hospital NHS Trust
Clinicaltrials.gov Identifier
z6364106/2020/08/04, UCL data registration
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Neonatal brain injuries around the time of birth can have dramatic life-long effects for affected children and their families. There have been major advances in healthcare that mean more babies with brain injuries survive, but we do not know the long-term effects of these injuries and how the lives of children will be affected.
Currently, we do not know which children should be routinely followed-up after discharge and how long for, in addition to not knowing what problems they may experience, or when they may experience them. We are therefore unable to answer parents’ important questions about their children’s futures.
This project will develop a new way to look at long term outcomes after brain injury, by using and linking information from health and school records, that’s already been collected by the government and NHS. We will look at the health and educational outcomes of children after neonatal brain injury, compared to children who did not have a brain injury. This will help us to understand how brain injuries around the time of birth affect children’s lives, in particular their health and educational outcomes. We will look at all children who had a neonatal brain injury that were born in England between 2008 and 2020. We will take our results to stakeholder meetings: to discuss them with those most affected. This will help us to understand what our results mean for affected children, their families, but also how policy and services could change to better support these children.
In summary, the information gained from this project about prognosis and quality of life after a neonatal brain injury will help staff to have family-centred discussions about what the future may hold and help shape health and educational services to better support these children reach their full potential.REC name
London - West London & GTAC Research Ethics Committee
REC reference
20/LO/1023
Date of REC Opinion
25 Sep 2020
REC opinion
Favourable Opinion