The Neonatal Data Set (NDS) is a secondary uses, patient-level, data set that captures key information recorded for the purposes of direct care at each stage of the neonatal critical care pathway including:

• demographics
• diagnoses
• daily interventions and treatments
• care processes
• outcomes
• follow up health status at age 2 years.

Data are currently captured for all babies admitted to NHS-funded neonatal units, primarily in respect of:

• mothers of babies admitted
• babies admitted.

Data is submitted to the Neonatal Data Analysis Unit at Imperial College London on a quarterly basis. Following receipt, any personal information is removed before adding to the National Neonatal Research Database (NNRD).

The data supports national audits, national policy development, national quality improvement, and approved research studies.

About this change

Version 2.0 of this information standard has been updated to enable the capture of greater detail as well as to align with current clinical practice. In addition this release introduces SNOMED CT®.

Changes to data items include:

• addition of data items, e.g. in relation to:
  • magnesium sulphate administration
  • maternal coronavirus
  • water births
  • neurology
• amendment of data items, e.g. in relation to:
  • early death and end of life pathways
  • maternal characteristics
  • methods of resuscitation
  • two year follow up
  • ODS codes
  • alignment with the national Maternity Services Data Set
  • alignment with NHS Data Model and Dictionary
• removal of data items, e.g.. in relation to:
  • previously defined as pilot items.

IT Systems MUST be fully conformant by 31 October 2022.

NHS Providers MUST be able to collect the information as defined in the Data Specification from 1 November 2022.