The Neonatal Data Analysis Unit was founded in 2007 and begun the creation of the National Neonatal Research Database (NNRD). The NNRD holds operational clinical information captured in the course of care The NNRD is available for multiple purposes including health services evaluations and research. Data in the NNRD are captured using the Neonatal Data Set (ISB1595) and include demographic details, daily records of interventions and treatments throughout the neonatal inpatient stay, information on diagnoses and outcomes, and follow-up health status at age two years.
In 2012 the UK National Neonatal Collaborative was established to support UK neonatal units in utilising clinical data to improve patient care and outcomes, and support service delivery and evaluation, including the National Neonatal Audit Programme.
The UK National Neonatal Collaborative comprises all NHS trusts contributing data to the National Neonatal Database at the Neonatal Data Analysis Unit. There are 187 neonatal units across England, Wales, Scotland and the Isle of Mann contributing data. This comprising 157 neonatal units in England, within 22 neonatal networks of 12 operational delivery networks, 13 neonatal units in Wales, 16 neonatal units in Scotland and 1 neonatal unit in the Isle of Man.
All neonatal units submit data to the NNRD through their data entry supplier. At present, there are over 800,000 babies and 9 million days of care for these babies submitted into the National Neonatal Research Database.
The Neonatal Data Analysis Unit has been given permission to use and store babies information in accordance with strict regulations, Research Ethics Committee approval (REC Reference: 16/LO/1093) and Confidentiality Advisory Group approval (CAG reference: ECC 8-05(f)2010). In order to draw reliable conclusions from audit and research, it is important that information is included on every baby treated within each neonatal unit. The National Neonatal Research Database is most effective when it contains information from as many patients as possible but if parents do not want their child’s information to be used, they may 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 National Neonatal Research Database. This will not affect the baby’s care in any way.
The National Neonatal Research Database is compliant with the General Data Protection Regulation (GDPR). The lawful basis of processing data is covered under the EU General Data Protection Regulation (GDPR) Article 6 (1) (e) Public Task and Article 6 (1) (f) legitimate interest. Special category data is processed under Article 9 (2) (i).
Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.
Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.
Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.
For further information please read the The National Neonatal Research Database Privacy Notice