Information for patients and carers
The National Neonatal Research Database
Information collected by staff on neonatal units are used to create the National Neonatal Research Database (NNRD). The information within the NNRD is called the Neonatal Data Set. This information is used to support research, surveys, quality improvement programmes and management reports aiming to improve newborn care and health outcomes. Any use of this information for research requires approval from a National Research Ethics Committee. No details that might identify you or your baby would be revealed unless you have provided your explicit permission to do so. The NNRD is created and held at the Neonatal Data Analysis Unit at Imperial College London where research is also carried out. These include linkage studies with other sets of data such as hospital admission statistics (HES) and mortality data sourced from the public body NHS Digital. Data from 2007 onwards are held in the NNRD.
If parents do not want their child's information to be used, they should tell the neonatal unit staff where their baby is being cared for. The staff will make sure their child's information is not sent to the Neonatal Data Analysis Unit and not included in the NNRD. This will not affect a baby’s care in any way.
Please find links to the National Neonatal Research Database Information for parents leaflet, the Neonatal Data Analysis Unit poster "Why your baby's data are important (pdf)" and The National Neonatal Research Database further information. These provide more information about the NNRD and the services and projects it supports.