Background: Sickle Cell Disease (SCD) is now one of the most common serious genetic condition in England. There is no reliable estimate of the total number of people living with SCD in the UK, to support commissioners and providers of services for people with SCD.
Aim: To obtain reliable data on the total number of people living with SCD in the UK in 2016.
Method: Information was requested from all national databases known to hold information on the number of people living with SCD in the UK. The information from each data source was first reviewed to estimate likely inaccuracies and then combined to provide a best estimate of people living with SCD in the UK.
Conclusion: This process indicated there are are about 14000 people living with SCD in the UK. This is equivalent to 1 in 4600 people.