Simplified Data Set (Clinical Data)

Data Exchange

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 .

Data Set

Requested Data	Source Item	Description	RDA Item	Source
Identifiers – NHS number or equivalent	NHS Number		PatientNumber	SIMPLIFIED / PDS
	Surname		Family	SIMPLIFIED
	Forename		Given
	DOB		BirthTime
	Sex		Gender
RRT Modality (full history)	TXT00	Date Treatment Started	FromTime	UKRR
	TXT01	Date Treatment Ended	ToTime
	TXT02	Treatment Modality (Code)	AdmitReason (what treatment they will receive) or DischargeReason (why they ceased treatment)
	TXT04	Reason for Treatment Change	DischargeReason
	TXTZ0	Hospital Center	SendingFacility
	TXT20	Treatment Centre	HealthCareFacility
	TXT40	Where they were previously	AdmissionSource
	TXT41	Transfer Out To	DischargeLocation
Transplant List Status
Transplant Listing	REGISTRATION_ID		EncounterNumber	NHS B&T
	REGISTRATION_DATE		FromTime
	REGISTRATION_END_DATE		ToTime
	TRANSPLANT_CONSIDERATION	Kidney / Kidney + Pancreas etc	AdmitReason
	REGISTRATION_END_STATUS		DischargeReason
Transplant Procedure	70536003 (SNOMED Code)	Renal Transplantation	ProcedureType
	TRANSPLANT_DATE		ProcedureTime
	UKT_FAIL_DATE		Attributes/TRA64
Medications Vitamin D preparations Alfacalcidol Paricalcitol Ergocalciferol Phosphate binders Statins Ezetimibe ACE inhibitors Angiotensin Receptor Antagonists Mineralocorticoid Receptor Blocker Beta Blocker	drugstartdate		FromTime	PV XML
	drugname		DrugProduct/Generic
	drugdose		Comment
Results / Observations	datestamp		ObservationTime	PV XML
	prepost		PrePost
	value		ResultValue or ObservationValue
	testcode		ServiceId or ObservationCode
	PV Code	Description	RDA Type
	pth	Parathyroid Hormone	Result
	adjustedcalcium	Corrected Calcium	Result
	phosphate	Phosphate	Result
	potassium	Potassium	Result
	urr	Urea Reduction Ratio	Result
	ktv	Kt/V	Result
	hb	Haemoglobin	Result
	albumin	Albumin	Result
	sodium	Sodium	Result
	alp	Alkaline Phosphatase	Result
	vitd	25-Hydroxyvitamin D	Result
	bpsys	Systolic Blood Pressure	Observation
	bpdia	Diastolic Blood Pressure	Observation

Data Source Notes

Data Source	Data Type	Notes
UKRR		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.
NHS B&T		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.
PV XML		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.
	Medications	Medications are not being sent due to issues with the 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.
	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.