Date lodged: 3 April 2019
To ask the Scottish Government whether the number of babies born with Down syndrome is recorded and, if not, for what reason, and whether NHS boards will be instructed to collect this data in the future.
Answered by: Clare Haughey 24 April 2019
NHS Information Services Division (ISD) recently began work on a project setting up a congenital anomaly register. The project is called the Congenital Anomaly and Rare Disease Registration and Information System Scotland (CARDRISS). CARDRISS is at the beginning of a 3 year project; actively looking to do a complex linkage to produce best estimates of all anomaly types (including Down’s Syndrome) from existing data but the timescale for the results of this are not confirmed yet.
If you want to keep up to date with CARDRISS you can find out more on the ISD Website - https://www.isdscotland.org/Health-Topics/Maternity-and-Births/CARDRISS/ .