In the last 12 years (2007-2018) in the UK, around 90,000 babies were born very premature (before 32 weeks). These children have an increased chance of requiring later life health, educational and social support.
As neonatologists, parents and patients, we want to make sure that babies born premature lead healthy and fulfilling lives as they grow up into children and adults. To do this, we need to track the progress of these children over a long time and find out what neonatal care and interventions (like feeding or breathing support) or factors after hospital discharge (like social or environmental) make a difference. However, the lack of joined up data has meant that we have no information on the progress of very preterm babies born in the last decade.
We will link a national resource, the National Neonatal Research Database (NNRD) to other population-level health, education, and environmental data. (Figure 1). This neonatal database holds detailed information about all babies admitted to neonatal units across England and Wales. Bringing together the data may help us identify neonatal care and interventions that result in better outcomes.
At the end of neoWONDER, we should be able to answer:
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.
We are inviting parents and adults born preterm to get involved. We want to find out what you think about data linkage, and what information about the future you want to know about your child/yourself.