The Neonatal Data Analysis Unit has established the National Neonatal Research Database (NNRD) holding operational clinical information captured in the course of care and to make this available for multiple purposes including health services evaluations and research. Data in the NNRD are captured using the Neonatal Data Set (ISB1595) [pdf] and includes 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. It is a national information standard for NHS England approved by the Information Standards Board now called the Standardisation Committee for Care Information. National Neonatal Research Database (NNRD) is made up only of items in the NDS.
All neonatal units across England & Wales submit data to the NNRD through their data entry supplier. At present, there are over 600,000 babies and 7 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.
There is also an NNAP guide for parents and carers (pdf).