Simplified Data Set

This will continue to be made available to the SIMPLIFIED project in the same way as now, namely a CSV file matching the one submitted to us with two additional columns for the Traced NHS Number of the patient (if found) and the Status Code associated with the lookup.

This will be returned in RDA format one file per patient, integrating data from a number of sources as described below. A sample file was sent to the SIMPLIFIED project a couple of months ago and confirmed suitable but it should be noted that the schema may have changed slightly since then and any code already written reviewed. The schema can be found at https://github.com/renalreg/ukrdc .

This data is only available after it has been processed by the UKRR Data Managers which happens approximately 12-18 months after the activity has happened.

This data is received by the UKRR approximatley 6 months after the activity in the extract happened.

Periods of Wait Listing / Transplantation will be recorded as Transplant Listing Elements.

The actual Transplants will be recorded as Transplant Procedure Elements.

Note that REGISTRATION_END_DATE doesn't seem to be well populated. There may be something we can do where we use the TRANSPLANT_DATE instead.

PatientView data is received daily by the UKRDC for Patients who have been enrolled in PatientView. This must have happened for the SIMPLIFIED patients in order for their data to be available.

There are a number of caveats around the Medication Data -

• Sites either send "current" medicinces or the "last 10 prescribed" depending on the operation of their extract. In the UKRDC we attempt to retain all medications but a consequence of this is that we would also keep medications that were recorded in error and since removed.
• If the Patient has left the Unit the renal system may still send their last known medications. to PatientView.
• PatientView is only sent medications that are listed on their Renal System. Most Renal Systems are not a prescribing system so what has actually been prescribed by the renal unit may be different. It also may not include medications prescribed elsewhere.
• In some cases the medication recorded on the prescription is what the Renal Unit advised the GP to prescribe in a letter. The GP may have chosen to prescribe something different.

There are some caveats around PV Results/Observations

• Even if a test code is in the dataset there will be variations in whether a renal system holds it or is configured to send it to PatientView
• Sites are unable to supply information about the units each result are in.
• Not all sites supply PRE/POST flags. Those that do typically generate this from whether the result is the 1st or 2nd of the day which can lead to some errors.