FOI Ref: 0047FOI2021

4th August 2020

Freedom of Information Act 2000 – Request for Information

We are pleased to respond to your request for information and our response is set out below:

Request

[redacted] is seeking to establish a definitive demographic profile of syndrome diagnosis across the UK to develop greater support services and activities for geographical areas. More information on the foundation's mission can be found at [redacted]

I am writing to you under the Freedom of Information Act 2000 to request the following information from the CCG: 

Information regarding the population of individuals with Smith-Magenis Syndrome, this is identified by a mutation or deletion of RAI1 gene on chromosome 17p11.2: 

• Total population covered by the CCG 
• The total number of people diagnosed with Smith-Magenis syndrome within this population 
• Year of Birth 
• Male / Female 

Please provide the information in the form of a spreadsheet 

Response

Please see enclosed spreadsheet as per request - FOI 0047FOI2021 smith-magenis syndrome.