Get Involved

We invite parents and adults born preterm to get involved in our focus groups, surveys and interviews.

We invite professionals interested in improving longer term outcomes through data linkage to join our focus groups.

Our Aim

Our aim is to improve the lifelong health and wellbeing of preterm babies by using routine data to evaluate the long-term impact of neonatal interventions.

What will we do?
We will link an established database, containing routine data from babies in NHS neonatal units, the National Neonatal Research Database (NNRD), to other routine health and educational data. We will do this for around 90,000 very preterm babies born in England and Wales over the last twelve years (2007-2018). By bringing together these data, we will find out how these children are doing at school ages, and we may be able to identify neonatal interventions that lead to better long-term outcomes.

How will we do this?

Working together with parents, patients and health professionals
Through focus groups, national survey, and interviews, we will find out what information from routine data are important to describe long-term health and wellbeing. We will also explore views on data linkage without consent and develop information resources to communicate these findings widely.

Working with NHS Digital, Department for Education, other expert groups
Through strong UK-wide collaborations, we will link the National Neonatal Research Database to health, education and environmental data. For very preterm children born in the last 12 years in England and Wales, we will answer the following questions:

  • What are the long-term health and educational outcomes in very preterm babies?
  • How does air pollution or other environmental and socio-economic factors influence these outcomes?
  • What is the impact of certain interventions, for example mother or donor breast milk on later health and educational outcomes?
About Us
We are a group of health professionals, researchers, parents and adults born preterm working together to transform data into information. This information will inform neonatal care and interventions to improve the lifelong health and wellbeing of babies born very preterm.
Get Involved

    586
    Parents/Patients
    26
    Professionals