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Neonatal Data Set

The authoritative source of national information relating to neonatal patient demographics, clinical interventions, diagnoses and outcomes.

Documentation

About this standard

Publisher
NHS England
Also known as
Also known as NDS.
Reference code
DAPB1595 Amd 30/2022
Publication date
13/06/2022
Status
Active
Show definitions of statuses

Active. Active standards are stable, maintained and have been approved, assured or endorsed for use by qualified bodies.

Deprecated Deprecated standards are available for use and are maintained, but are being phased out, so new functionality will not be added.

Retired standards Retired standards are not being maintained or supported and should not be used.

Standard type
  • Collections
  • Information standards
Show definitions of standard types

Collections. A Collection is a systematic gathering of a specified selection of data or information for a particular stated purpose from existing records held within health and care systems and electronic devices.

Extractions. An extraction is a type of collection that is pulled from an operational system by the data controller and transmitted to the receiver without additional processing or transcription by the sender.

Information standards. Information standards are agreed ways of doing something, written down as a set of precise criteria so they can be used as rules, guidelines, or definitions.

Technical Standards and specifications. Technical standards and specifications specify how to make information available technically including how the data is structured and transported.

Collection level

Record level

Frequency

Dataset publication or collection occurs every three months.

Contact point

Using this standard

Applies to
All organisations providing NHS-funded neonatal services
Impacts on
Implementation of this information standard impacts all health IT systems suppliers providing systems to the above providers; suppliers should work with their customers to determine necessary changes.
Associated medias
Conformance date
16/01/2023

Topics and care settings

Topic
  • Child
  • Data definitions and terminologies
  • Demographics
  • Key care information
  • Reference data
Care setting
  • Community health
  • Hospital
  • Maternity
  • Urgent and Emergency Care
Related standards

Review Information

Scope
NHS Services
Sponsor

Dr Paul Craven, Head of Research Operations, Imperial College London

Senior Responsible Officer

Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London

Business Lead
Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London
Approval date
26/05/2022
Post Implementation review Date
30/11/2023
Legal authority
  • Section 250 of the Health and Social Care Act 2012

    This information standard is published under section 250 of the Health and Social Care Act 2012

  • NHS standard contract

    This collection is published under the NHS Standard Contract.

More information

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.

Page last updated: 03 May 2024