Cystic fibrosis diagnoses (FOI)

​Request

A
How many people are currently living with the condition cystic fibrosis in Jersey?

B
How many people were diagnosed with cystic fibrosis between 2015 and 2019?

Response

Information on diagnoses made by GPs is recorded on a centralised system (EMIS). Whilst the Government of Jersey may be able to interrogate the EMIS system for information, this information is not routinely collated outside of 12 conditions recorded under the Jersey Quality Improvement Framework (JQIF).

The search functionality for EMIS is complex, and because the data is input by numerous different, private practices it is difficult to be confident of data standards, therefore search results can be misleading. That is why, with the exception of the JQIF datasets, the Government does not routinely compile or report on EMIS data. It should also be noted that the EMIS system is information held by the GPs rather than by the Government – whilst the Government can review this data it is not held by them for the purposes of the Freedom of Information (Jersey) Law 2011.