Collection

National Congenital Anomaly and Rare Disease Registration Service

NCARDRS records those people with congenital abnormalities and rare diseases across the whole of England.

• From: Public Health England
• Published: 27 March 2015
• Last updated: 4 September 2019 — See all updates

About the registry service

We are currently reviewing patient information materials with the involvement of patients and carers.

• National Congenital Anomaly and Rare Disease Registration Service: patient leaflet
  • 14 February 2019
  • Promotional material

Data collection

• NCARDRS: antenatal data collection
  • 5 October 2018
  • Form
• NCARDRS: delivery data collection
  • 5 October 2018
  • Form
• NCARDRS: postnatal data collection
  • 5 October 2018
  • Form

Annual reports

• NCARDRS congenital anomaly statistics: annual data
  • 29 September 2021
  • Research and analysis

Data briefings

• Spinal muscular atrophy type 1: NCARDRS data briefing
  • 4 September 2019
  • Guidance

Published 27 March 2015
Last updated 4 September 2019 + show all updates

1. 4 September 2019

   Added 'Spinal muscular atrophy type 1: NCARDRS data briefing'.

2. 8 October 2018

   Removed references to Zika because the special arrangements no longer apply.

3. 20 July 2017

   Added 'NCARDRS congenital anomaly: annual data'.

4. 9 February 2016

   Added data collection forms.

5. 27 March 2015

   First published.