Information for patients/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.
Please find links to the National Neonatal Research Database Information for Parents leaftlet, the NNRD Poster and privacy notice. These provide more information about the NNRD and the services and projects it supports.
Opting out of your baby's data being included in the NNRD
England only- National data opt-out
The national data opt-out is a service that allows patients to opt out of their information being used for research and planning.
Patients can view or change their national data opt-out choice at any time by using the online service at www.nhs.uk/your-nhs-data-matters or by clicking on "Your Health" in the NHS App, and selecting "Choose if data from your health records is shared for research and planning".
If this is done NHS Digital will inform Clevermed who will ensure the opt out data is not transferred to the National Neonatal Research Database.
England, Scotland, and Wales
A parent can either log a call or email to the data hosting company, Clevermed Limited, themselves or request a member of staff on the Neonatal Unit to do so on their behalf. This can be done by email firstname.lastname@example.org or phone +44 (0)131 221 7700.
Clevermed will ensure data is not transferred to the National Neonatal Research Database.