Contributing to the NNRD

  1. Neonatal units utilise Electronic Patient Records for their patients using the Clevermed BadgerNet platform.
  2. The Electronic Patient Records are transmitted from NHS Trusts over the secure NHS N3 network to Clevermed servers; records are available in real-time to neonatal units
  3. Clevermed creates a quarterly extract (the Neonatal Data Set) of Electronic Patient Record items and transmit these over the N3 network to NDAU. Approval is held from the Caldicott Guardians and Lead Neonatal Clinicians of all contributing NHS trusts.
  4. At Chelsea & Westminster NHS Foundation Trust the NDAU receive the data, which are held in a 256bit encrypted MS SQL 2012 file on a secure NHS server in accordance with Information Governance (IG) Toolkit. Approval is also held from the Confidentiality Advisory Group of the Health Research Authority to receive a limited number of patient identifiers (NHS Number, Date of Birth and Post code ) for linkage purposes only (ECC 8-05(f)/2010). Linkage is carried out for research purposes with Hospital Episode Statistics (HES) data and Office of National Statistics (ONS) Mortality data that are supplied by the Health and Social Care Information Centre (HSCIC).
  5. Data are cleaned and anonymised before entry into the National Neonatal Research Database. The National Neonatal Research Database is approved by the National Research Ethics Service (REC reference 16/LO/1093). The NNRD is composed of the Neonatal Data Set (SCCI 1595).
  6. Potentially erroneous data are highlighted during the data cleaning processes and are made available for review to neonatal units over the secure N3 network using the UK Neonatal Collaborative Online Portal; access is governed by IG toolkit of Chelsea & Westminster NHS Foundation Trust
  7. Neonatal units can re-enter data identified as potentially erroneous in the Electronic Patient Record; the National Neonatal Research Database is updated with the corrected information in the next extraction

UK Neonatal Collaborative

The UK National Neonatal Collaborative was established in 2012 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 Collaborative comprises neonatal units contributing data to the National Neonatal Research Database at the Neonatal Data Analysis Unit. There are now over 190 neonatal units across England, Scotland & Wales contributing data to the NDAU comprising 158 neonatal units in England, 14 neonatal units in Scotland, 13 neonatal units in Wales.

Participants are asked to sign a NDAU Caldicott Approval Form for NNRD . To join the UK National Neonatal Collaborative please complete and return a copy of the agreement to Richard Colquhoun, NDAU manager at r.colquhoun@imperial.ac.uk or post to the address below.

Section 251 authorisation which has been approved by the Confidential Advisory Group, the reference is ECC 8-05(f)/2010.

The participation of all neonatal units in Northern Ireland is welcome. A map of all known neonatal units in the United Kingdom & Northern Ireland is also available as well as a NNU Listing for English, Welsh and Scottish NNU's.

There are also an introductory NNAP Calidicott Guardian letter [pdf] a NNAP guide "Your baby's care"  and a NDAU poster Why your baby’s data are important  to download.