This page doesn’t include the forthcoming changes related to the National Data Opt-Out and the extent to which this applies to the UKRR’s s251 collections.
Patients can ask that their identifiable data not be sent to the UK Renal Registry by registering their preference with their Renal Unit (We are exempt from the National Data Opt-Out). To allow this there must be a way to record this preference in the Renal System and for the UKRDC extract to then anonymise the extract. The exception to this is where the patient has also given individual consent to participate in a project which uses the UKRDC as its source of data (PKB, RADAR, SIMPLIFIED, etc.). In this case their identifiable data should still be sent, with the addition of an OptOut record recording their preference. When the data is extracted from the UKRDC for UKRR purposes the identifiable information will be removed.