Collection

National Congenital Anomaly and Rare Disease Registration Service

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

About the registry service

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

Data collection

Annual reports

Data briefings

Updates to this page

Published 27 March 2015
Last updated 4 September 2019 + show all updates
  1. Added 'Spinal muscular atrophy type 1: NCARDRS data briefing'.

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

  3. Added 'NCARDRS congenital anomaly: annual data'.

  4. Added data collection forms.

  5. First published.