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:
LATEST NEWS: INVITATION TO COMPLETE SURVEY AND OUR CHRISTMAS NEWSLETTER!
Are you a parent or adult with experience of preterm birth?
Please can you complete a survey we developed with parents and patients seeking your views on data linkage and long-term outcomes?