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FOI release

FOI – 2024-000204 Sickle Cell disorder (HTML)

Published on 07 June 2024

Date received – 16 May 2024 | Date responded – 07 June 2024


I’m looking to find out the latest official figures on prevalence of sickle cell disorder in Scotland. I work for the Sickle Cell Society and need to ensure I’m quoting the most up to date figures for the numbers of people living with the condition across the UK.


I refer to your freedom of information request that we received on 16 May 2024 requesting the following information.

We have now completed the search of our records and can provide you with the following information:

There are 413 patients with sickle cell disease that reside in Scotland and are actively registered on the National Clinical Audit System. Note, this will not be fully representative of the full population as the data is collected for audit purposes rather than clinical care.

I would recommend contacting the individual Health Boards who may be able to provide more accurate figures for their population (it’s not specific to screening), contact details are as follows:

I trust you will find the information of assistance and if you require any further information, please do not hesitate to contact us.

If you are unhappy with any aspect of how we have dealt with your request, you can make representations to us asking us to review the handling of your request.

If you require any further information, please contact Head of Information and Cyber Security, Digital and Security within 40 working days of the date of this correspondence.



NHS National Services Scotland
Gyle Square
1 South Gyle Crescent
EH12 9EB

If after a review you are still unhappy, you also have the right to apply to the Scottish Information Commissioner, who can be contacted at Kinburn Castle, St Andrews, Fife, KY16 9DS, or via their application form.