Why we are doing the research?

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Why we are doing the research?

In the UK, premature birth affects 6-7% of babies. About half of premature babies develop problems as they grow up, which can include diagnoses such as cerebral palsy or problems with learning, behaviour or educational difficulties. There are no treatments to prevent these problems, and we do not know how to provide the best support for those children who develop them. We want to find new ways of helping children born too soon.

PRENCOG Infographic: How does premature birth affect the developing brain (link to PDF document)

PRENCOG is a programme of research consisting of four interlinked studies or ‘work packages’.  

Work Package 1 

The goal of Work Package 1 is to understand how the factors related to being born early affect a child's brain development and school performance. We will, for the first time in the UK, do this by linking data about their care when they were admitted to NHS neonatal units (from the National Neonatal Research Database) to their official education records (from the National Pupil Database).  This allows us to follow the health and education outcomes of babies from birth to age 7-11 (Key Stage 2). Using statistical and mathematical modelling, we will investigate which factors are the most important for predicting how well a preterm baby will do. Using these findings, we will create visualisations comparing the size of the contribution of these factors to a child’s outcomes, which will help doctors and other caregivers to quickly identify the most important ones for influencing positive outcomes This will enable targeted care to protect the brain earlier and improve longer-term outcomes to optimise success across the life course.

Work Package 2

Scientists think alterations in how premature babies respond to stress or how their immune system adapts to life outside the womb could affect the developing brain. We will measure stress and immune responses (without doing any extra blood tests on your baby) and take detailed brain pictures using an MRI scan. Then, we will use the information to learn whether and how stress and/or immunity affect the brain and what factors activate those processes. Once we know this, scientists will be better positioned to design treatments that could help.

We hope that 200 pairs of mothers and babies who are born preterm and 100 pairs of mothers and babies who are born around the expected date of delivery will take part. We have a short video that explains why we are doing this research.

Click here to watch the video without subtitles, or click here to watch with subtitles.

We are currently recruiting mothers and babies to this study. 

If you would like more information or are interested in taking part, please watch the short video or contact our research midwives by phone on 0131 242 1665 or 07443274839, or email prencog@ed.ac.uk  

Further information is available on this website in the ‘For Families’ section.

Work Package 3

The impact of preterm birth extends across development, potentially impacting several areas such as social functioning, memory, language, and attention. Research has shown that the brain becomes increasingly tuned towards social information over the course of development. For example, the ability to recognise and reason about the thoughts, beliefs, and emotions of other people improves throughout childhood. Both brain development and social experiences in early life impact how this ability develops. Currently, it is not clear whether this is altered as a result of preterm birth. In this study we aim to learn more about how brain structure and function might contribute to potential differences within areas such as social functioning in preterm children at school age.

Families taking part in the Theirworld Edinburgh Birth Cohort will be invited to bring their 5-year-old children for a research visit and an MRI scan. This study is investigating the outcomes of preterm birth over time by following 300 preterm and 100 term babies across development.

During the MRI scan we will collect images that tell us about brain function by showing children movies that have different types of content, such as social situations or language. This will allow us to see how their brains react within areas most likely to be impacted following preterm birth. We will also collect images of their brain structure. By combining this information, we hope to learn whether there are differences in brain function following preterm birth, and if there are corresponding differences in the underlying brain structure.

Another aim of this study is to investigate whether the preterm birth risk factors identified in Work Package 1 (described above) have an impact on behavioural and cognitive outcomes at 5 years. Our goal is to better understand the brain development of children born preterm so we can support their positive growth and outcomes as they get older.

 Work Package 4

The aim of Work Package 4 is to involve parents and survivors of preterm birth in research.  We will work with parents and advocacy groups (such as the Adult Preemie Advocacy Network) to guide the whole research process and plan follow-on work that arises from it.  We will appoint a parent advisory group (PAG) who will co-design parent and public facing materials and advise on plans to share the research findings.  We will commission an artist to work with the PAG to develop ways of communicating.