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UK Renal RegistryUK Renal Registry

Database System SpecificationV 3.14

UK Renal RegistrySouthmead HospitalBristolBS10 5NB

www.renalreg.com26.10.09

Renal Registry Database - System SpecificationVersion 3.14

Contents

TRANSFER FILE OVERVIEW.......................................................................................................................3TRANSFER FILE STRUCTURE – DATA BLOCKS...........................................................................................4

Patient Identifier - IDN.........................................................................................................................4Patient Data - PAT...............................................................................................................................5End Stage Renal Failure - ERF............................................................................................................7Annual Co-Morbid disease - COM......................................................................................................8Serology - SER.....................................................................................................................................8Erythropoietin dosage - EPO...............................................................................................................9Quarterly Treatment History – QUA..................................................................................................10Monthly Treatment History - QBL....................................................................................................12Hospital Admission - HOS................................................................................................................14BAPN Paediatric – PAE....................................................................................................................14KT/ V or Urea reduction ratio calculation - KTV..............................................................................14Treatment Time line - TXT...............................................................................................................15Haemodialysis session - QHD............................................................................................................16Transplant waiting list status – TXP..................................................................................................16Vascular access...................................................................................................................................16Dialysis Access - Referral data – ACL..............................................................................................16Dialysis Access details – ACC...........................................................................................................17Dialysis Access Event – ACP............................................................................................................17Peritonitis - PER................................................................................................................................18Transplant follow up - TRA..............................................................................................................18Immuno suppression dose – IMM......................................................................................................18Administration – ADM......................................................................................................................19

CODE LISTS..........................................................................................................................................20Hospital Centre RR1..........................................................................................................................20Marital Status - RR2..........................................................................................................................22Ethnicity Codes RR3..........................................................................................................................22EDTA Primary Renal Disease (ERF) codes- RR4.............................................................................23EDTA cause of Death – RR5.............................................................................................................24EPO drugs - RR6................................................................................................................................25Treatment timeline – Modality codes RR7.......................................................................................26Treatment Supervision Codes – RR8.................................................................................................27Transplant Waiting List Codes - RR9................................................................................................27Causes of Graft Failure – RR10 ( UKT Codelist)............................................................................28Reasons for change of treatment –RR11............................................................................................28Vascular Access Codes VA02 – VA143..........................................................................................30

COMORBIDITY DEFINITIONS – ERF20 – ERF41 & COM21 – COM44..................................................35KARNOFSKY PERFORMANCE STATUS SCALE DEFINITIONS RATING (%) CRITERIA...................................36ADVANCE NOTICE OF CHANGE IN DATA SPECIFICATION TO COVER CKD5 PATIENTS.............................36SYSTEMS SPECIFICATION TO ENABLE PATIENT OPT-OUT FROM IDENTIFIABLE DATA..............................36

Introduction........................................................................................................................................36Data Protection Act 1998...................................................................................................................37National Health Service Act 2006 section 251 (Health & Social Services Act 2001, Section 60)....37Local system screen menu changes....................................................................................................37Definitions of Additional Registry Data items – IDN05, IDN06, IDN07.........................................37Load Renal Registry Numbers...........................................................................................................38Summary List of Items not to be transmitted.....................................................................................39

AMENDMENTS – VERSION CONTROL.................................................................................................40AMENDMENTS to Version 3.12 (26th October 2009)....................................................................40AMENDMENTS to Version 3.01 (1st March 2008).........................................................................42AMENDMENTS to Version 2.31 (1st March 2008) as per national renal dataset testing.................43AMENDMENTS to Version 2.30 (1st March 2007)..........................................................................45AMENDMENTS to Version 2.27 (24th August 2005).......................................................................46AMENDMENTS to Version 2.26 (6th June 2004).............................................................................47AMENDMENTS to Version 2.25 (18th August 2003)......................................................................47AMENDMENTS to Version 2.24 (1st Nov 2002)..............................................................................48

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AMENDMENTS to Version 2.23 (1st Jan 2002)...............................................................................48AMENDMENTS to Version 2.22......................................................................................................49AMENDMENTS to Version 2.21......................................................................................................49AMENDMENTS to Version 2.20......................................................................................................49AMENDMENTS to Version 2.19......................................................................................................50AMENDMENTS to Version 2.18......................................................................................................50AMENDMENTS to Version 2.17......................................................................................................50AMENDMENTS to Version 2.16......................................................................................................50AMENDMENTS to Version 2.15......................................................................................................51AMENDMENTS to Version 2.14......................................................................................................51AMENDMENTS to Version 2.13......................................................................................................51AMENDMENTS to Version 2.12......................................................................................................51AMENDMENTS to Version 2.11......................................................................................................52AMENDMENTS to Version 2.10......................................................................................................52

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Renal Registry Data Set (Version 3.14)

Transfer File Overview

The structure of the transfer files is of a nested block format. Each transmitting centre will have an identifying header followed by blocks of patient data which are divided into discrete sets of data such as patient static data or treatment history. These sets of data (of which more than one of each type may occur) each contain a list of fields. Each field in a data block is preceded by an identifying label (and in the case of coded data as code-type label as well). This increase in redundancy allows for optional data items to be dropped from the block and for future expansion of the field set.

The file transfer format is defined in Backus Naur notationIn describing the individual data fields for each of the transmission table sets the following abbreviations will be used:

Data Type DescriptionS <STRING_VAL>C <CHAR_VAL>N <NUM_VAL>D <DATE_VAL> D = Date ANSI DD/MM/YYYYT <DELTA_TIME> -NO LONGER USEDCode coded value as in <CODED_DATA>X coded value , where valid values will be specified for the field

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Transfer File Structure – Data blocksThe file naming convention will be as follows: Ryyyyqnn.rr for Live transmissions

where ‘yyyy’ is the year, ‘q’ is the quarter number 1-4, and ‘nn’ is a sequentially incremented file number. All files will have the extension .rr

<TRANFSER_FILE> ::= <CENTRE_ID><BLOCK_DATA><END_CENTRE><CENTRE_ID> ::= !CNT:<CENTRE_DATA><CENTRE_DATA> ::= <FIELD_DATA>{<FIELD_DATA>}<END_CENTRE> ::= !ENDCNT

The <FIELD_DATA> definitions for <CENTRE_DATA> are given in the following table.

Field ID DataType

Mand Description

CNT00 C*5 Y Centre code ID ( Code list RR1)CNT01 D Y Date of transmissionCNT02 N*4 Y Quarter transmission applies to

<BLOCK_DATA> ::= <PATIENT_DATA>{<PATIENT_DATA>}[<ASD_DATA>]

Patient Identifier - IDN

Field ID DataType

Mand Description

IDN00 C*10 Y RR no – will be blank if new registrationIDN01 S Y Patient surnameIDN02 S Y Patient ForenameIDN03 D Y Date of BirthIDN04 C*15 Y Local Hospital NumberIDN05 C*1 Flag for Refused permission to send identifiable data to

UKRR - “Y”IDN06 NNNN Year of birth if IDN05 set to “Y”IDN07 C*20 Unique identifier not attributable to patient (site code plus

internal record number or some thing similar) only sent when IDN05 set to “Y” .This must be stored and accessible locally

For IDN05 – IDN07 see page 38

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Patient Data - PAT Patient details

Field ID DataType

Mand Description

PAT00 X*1 Y Sex 1= Male 2= Female 8= UnknownPAT01 Code Y Hospital centre code (code list RR1)PAT02 C*1 Y Minimal Dataset Flag A = existing RRT patient B = new RRT

patient, C= conservative management, D= CKD5, E= study PAT03 C*1 Y ERF Patient flag Y = ERF N = non ERFPAT04 C*1 Y2,3 Paediatric patient flag N = non paed Y = paedPAT05 C*1 Y Patient Centre 1y flag Y = Primary N = SecondaryPAT10 N*5 UKTSSA numberPAT12 C*15 Super CHI number – ScotlandPAT13 C*12 New NHS number format nnn nnn nnnn or without the spacesPAT16 C*10 Scottish Registry number – ScotlandPAT20 S*40 Y Address line 1PAT21 S*40 Address 2PAT22 S*40 Address 3PAT23 P Y Postcode (uses postcode validation software) PAT24 C*1 Marital status (Code list RR2)PAT25 Code Ethnic Group code (Read code)(Code List RR3)PAT26 Health authority code – sent FROM Registry but not to the

Registry PAT27 P GP postcode (for PCT link)PAT29 Code Dominant arm (code list VA03)PAT30 N*5 Y2 Adult Height (cm) = >18 [100.0-240]PAT31 N*5 Y3 Height at first visit (if age < 18) [20.0-240]PAT32 Nnn.n Y2,3 weight (kg) at first visit [1.5 – 220.0]PAT33 D Y2,3 Date first seen by Renal Physician PAT34 N*4 Y2,3 Serum Creatinine when first seen [20-2800]PAT35 D Date of renal referral (ie date letter received)PAT36 Code Referral from GP / Hosp specialist (code CN / GP)PAT37 Code Referring GP code (valid if PAT36=GP, lookup national GPcode table)

PAT40 D Date of death >=Date registered < todayPAT41 Code Cause of death Read codePAT42 Code Main Cause of death EDTA (code list RR5)PAT43 Code Cause of death 2 EDTA (code list RR5)PAT44 S*70 Cause of death textPAT51 C*1 Transfer to new centre flag Y/NPAT60 S*40 GP Address line 1PAT61 S*40 GP Address line 2PAT62 S*40 GP address line 3PAT63 S*40 GP address line 4PAT70 Code Patient Blood Group ABO PAT71 Code Blood Group Rhesus POS= +ve NEG = -ve

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PAT80 D Y Date of 2nd eGFR 90 days later (CKD5)PAT81 nn 2nd eGFR 90 days later (CKD5) PAT82 D Y Date of 1st eGFR of CKD5

(Date of Start of CKD5)PAT83 nn Y 1st eGFR at start of CKD5

Mandatory indicator when Y alone means field is always required. When it is qualified with a number , then is mandatory when that set of circumstances is in force.

- Mandatory items for existing ERF patients PAT02 = A PAT03 = Y

- New ERF registrations ,non paediatric PAT02 = B PAT03 = Y PAT04 = N

- New ERF registrations , paediatric PAT02 = B PAT03 = Y PAT04 = Y

CKD5 Data collectionCKD5 is defined as an eGFR less than 15 followed by another eGFR less than 15 - a minimum of 90 days apart. If 2 eGFRs <15 are found which are > 90 days apart then date of the first one is the DATE of START of CKD5.(PAT82) PAT80 is the second date

Definition of items PAT80-83Date of CKD5, the two eGFRs that define it with dates

The program logic to detect these patients is;Prior to data extraction routine, additional software goes through database for current quarter. If patient not on RRT and CKD 5 flag not set already then;

a) Scan biochemistry eGFR timeline forward from earliest date to end of previous quarter

b) If no eGFR <15 then skip to next patientc) If eGFR <15 then ‘temp store date’, scan forward up till current end quarter dated) If next eGFR >15 then clear temp store date go back to scanning forward and (b)e) If next eGFR <15 then if date of eGFR > 90 days after ‘temp store date’ then set

PAT02 flag to D as CKD5. Store these 2 dates and 2 eGFRs in in PAT data block. Skip to next patient

f) If next eGFR <15 then if date of eGFR <90 days scan forwards to (e)g) If current end quarter date reached then clear temp store skip next patient

Update quarterly extraction quark to add this report cohort in the index The same CKD5 dates and eGFR fields can be resent every quarter.

Use of new CKD5 items and advance notice of future data collection – page 36.

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End Stage Renal Failure - ERF required if PAT03 = ‘Y’

Field ID DataType

Mand Description

ERF00 D Y2,3 Date 1st ERF treatment [valid > DOB]ERF01 nnn.n Y2,3 Weight at 1st ERF treatment [1.5-199]ERF03 Code N Primary disease code (ICD)ERF04 N*2 Y EDTA primary renal disease code (Code list RR4) All patients

who started RRT before 1/1/2014)ERFAJ N4 Y New EDTA primary renal diagnosis code (All NEW patients

from 1/1/2014) (Codelist RR20)ERF05 Code 2o cause of ERF (1) (Code list RR4)ERF06 Code 2o cause of ERF (2) (Code list RR4)ERF08 Code 2o cause of ERF (3) (Code list RR4)ERF09 S*70 Primary disease code textERF12 Code S Access used when first dialysed (Code list VA02)ERF20 X*1 Y2 Angina flag 1 = N 2 = YERF21 X*1 Y2 Previous MI with last 3 months 1 = N 2 = YERF22 X*1 Y2 Previous MI > 3 months ago 1 = N, 2 = YERF23 X*1 Y2 Previous CAGB or Coronary angioplasty 1 = N 2 = YERF24 X*1 Y2 Episode of Heart failure (either right of left) 1 = N, 2 = YERF30 X*1 Y2 Smoking 1 = N 2 = YERF31 X*1 Y2 Chronic Obstructive Pulmonary Disease 1 = N 2 = YERF32 X*1 Y2 Cerebrovascular disease – symptomatic 1 = N 2 = YERF33 X*1 Y2,3 Diabetes – not causing ERF 1 = N 2 = YERF34 X*1 Y2,3 Malignancy 1 = N 2 = YERF35 X*1 Y2,3 Liver disease 1 = N 2 = YERF40 X*1 Y2 Claudication 1 = N 2 = YERF41 X*1 Y2 Ischaemic/Neuropathic ulcers 1 = N 2 = YERF42 X*1 Y2 Angioplasty, vascular graft, aneurysm, stent (non-coronary) 1

= N 2 = YERF43 X*1 Y2 Amputation for PVD 1 = N 2 = YERF50 X*1 Y3 Antenatal diagnosis 1 = N 2 = YERF51 X*1 Y3 Antenatal treatment 1 = N 2 = YERF52 X*1 Y3 Preterm 1 = N 2 = YERF53 X*1 Y3 Cerebral Palsy 1 = N 2 = YERF54 X*1 Y3 Developmental / Educational handicap 1 = N 2 = YERF55 X*1 Y3 Congenital heart disease 1 = N 2 = YERF56 X*1 Y3 Other major congenital abnormalities 1 = N 2 = YERF57 X*1 Y3 Downs syndrome 1 = N 2 = YERF58 X*1 Y3 Other chromosomal abnormalities 1 = N 2 = YERF59 X*1 Y3 Other syndromal diagnosis 1 = N 2 = YERF60 X*1 Y3 Neural tube defect 1 = N 2 = YERF70 D Date of last creatinine prior to start of ERF (valid > dob+1)ERF71 N4 Last creatinine prior to start of ERF (valid 200 – 3300)ERF72 D Date of last haemoglobin prior to start of ERF (valid dob +1)ERF73 N4 Last haemoglobin prior to start of ERF (valid 3.0 –20.0)ERF90 X*1 Y Submit Data to UKTSSA Y/N

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Field ID DataType

Mand Description

ERF91 X*1 Y Submit Data to EDTA Y/NERF20 – ERF60 Co-morbidity present at start of ESRF (ERF00) see definitions page 36Mandatory data qualifiers are the same as apply to the Patient Registration block.

Annual Co-Morbid disease - COM Data block if centre option set and for non-paediatric patients. Co-morbidity assessed on an ANNUAL basis – every year AFTER start of ESRF, Chronic conditions to be logged every year. (Definitions p36)

Field ID DataType

Mand Description

COM00 D Y Date of Co-morbid diseaseCOM20 X*1 Y Angina 1 = N 2 = YCOM21 X*1 Y Previous MI within last 3 mths 1 = N 2 = YCOM22 X*1 Y Previous MI > 3 mths ago 1 = N 2 = YCOM23 X*1 Y Previous CAGB or Coronary Angioplasty 1 = N 2 = YCOM24 X*1 Y Episode of heart failure (R or L) 1= N 2 = YCOM30 X*1 Y Smoking 1 = N 2 = YCOM31 X*1 Y Chronic Obstructive Pulmonary Disease 1 = N 2 = YCOM32 X*1 Y Cerebrovascular disease – symptomatic 1 = N 2 = YCOM33 X*1 Y Diabetes – not causing ERF 1 = N 2 = YCOM34 X*1 Y Malignancy 1 = N 2 = YCOM35 X*1 Y Liver disease 1 = N 2 = YCOM40 X*1 Y Claudication 1 = N 2 = YCOM42 X*1 Y Ischaemic / Neuropathic ulcers 1 = N 2 = YCOM43 X*1 Y Angioplasty, vascular graft, aneurysm, stent (non-coronary) 1

= N 2 = YCOM44 X*1 Y Amputation for PVD 1 = N 2 = YCOM70 nnn Y Karnofsky Performance Scale [0-100] (Definitions Page )

Definitions of co-morbidity Page 37

Serology - SER Data Block if centre options set

Field ID DataType

Mand Description

SER10 C*3 HBV antibody status NEG = -ve POS = +ve UK=unknownSER11 D Date of test HBV surface antibody (SER10)SER14 C*3 HBV surface antigen status NEG = -ve POS = +ve

UK=unknownSER15 D Date of test HBV surface antigen (SER14)SER18 C*3 HCV antibody status NEG = -ve POS = +ve UK=unknownSER19 D Date of test HCV surface antibody (SER18)SER22 C*3 CMV antibody status NEG = -ve POS = +ve UK=unknownSER23 D Date of test CMV antibody (SER22)

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SER24 D Date CMV PCR test

SER25 N5 CMV PCR copies/ml (valid 0 – 99,000)

SER26 D Date CMV antigenaemia pp65 test

SER27 CMV antigenaemia pp65 assay

SER30 D Date HIV test

SER31 C*3 HIV antigen POS / NEG / UK

For SEROLANN option HBV and HCV are mandatory as long as remain –ve (1) once +ve no further data will be expected

Erythropoietin dosage - EPO Data Block if EPOUSE option

Field ID DataType

Mand Description

EPO00 D Y Start date of periodEPO01 D Y End date of periodEPO03 N*2 Total units transfused in periodEPO04 X*1 Y Parenteral Iron in period returned as Y/NEPO11 CodeR EPO drug name (Read code) (Code list RR6)EPO12 N*5 EPO dosage per week (replaces EPO02) stored same fieldEPO13 Code EPO administration route iv/im /scEPO14 Code EPO frequency 2xw,3xw, 1w, 2w,3w,4w 5w 6w 7w 8w

Mandatory Data qualifier 1 - EPODOSE option set

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Quarterly Treatment History – QUA Data Block

For patients on HD all laboratory measurements are PRE Dialysis unless otherwise stated

Field ID DataType

Mand Description

QUA00 D Y Start date of periodQUA01 D Y End date of periodQUA02 Code Y Detailed treatment modality code (code list RR7)QUA03 X*1 Additional Haemo flag on PD 1 = N 2 = YQUA04 Code Y Treatment centre code (code list RR1 + satellite code list)QUA05 Code Treatment supervision code (code list RR8)QUA06 Code Transplant Waiting List Status (code list RR9)QUA07 Code Sending Hospital code –same as PAT01 (code list RR1)QUA09 Y Quarterly version of primary / secondary centre flagQUA10 N4 Y1 Creatinine (umol/l) [20-2500] Pre Dialysis creatinine if

HD/PDQUA11 nnn.n Y1 Urea (mmol/l)[1-199]QUA12 N4 Creatinine 1st month of quarter (umol/l) [20-2500]QUA13 N4 Creatinine 2nd month of quarter (umol/l) [20-2500]QUA21 nn.n Y2 Hb (g/dl) [3.0 - 20.0]QUA22 N4 Y6 Ferritin (ug/l = ng/ml) [1-8000]QUA23 N2 Y7 Albumin (g/l) [10-60]QUA24 N3 Y4 Aluminium [0-180]QUA25 nn.n Y12 HbA1c [3.0-25]QUA26 nn.n Y9 Cholesterol (mmol/l) [1.0 - 22.0]QUA27 nnn.n Y8 iPTH pmol/l (pmol/l = ng/l /9.8) [0.1 – 500.0] QUA28 nn.n % Hypochromic red cells (%)[0.1 – 20]QUA29 nn.n MCH [19.1-39.9]QUA30 n.nn Y14 Calcium (mmol/l) [1.00 – 4.90]QUA31 n.nn Y15 Corrected Calcium (mmol/l) [1.00 - 4.90]QUA32 n.nn Y1 Phosphate (mmol/l) [0.20 -5.50]QUA33 nn.n Y13 Bicarbonate (mmol/l) [5.0 –49]QUA34 N3 Y13 Sodium (mmol/l) [90 – 170]QUA35 N3 Y13 CRP [0 – 199] QUA36 nn.n Y13 LDL cholesterol (mmol/L) [0.1 - 14.9]QUA37 nn.n Y13 HDL cholesterol (mmol/L) [0.1 – 4.9]QUA38 nn.n Y13 Triglycerides (mmol/L) [1.0 – 39.9]QUA40 N3 Y5 Systolic BP (mm Hg) [60-300], pre dialysis if HD/PDQUA41 N3 Y5 Diastolic BP (mm Hg) [35-200], pre dialysis if HD/PDQUA42 nnn.n Y10 Weight Kg [1.5 - 199.0](post dialysis)QUA44 N3 Y5 Post dialysis Systolic BP (mm Hg) [60-300]

(valid only on haemo)QUA45 N3 Y5 Post dialysis Diastolic BP (mm Hg) [30-200]

(valid only on haemo)QUA50 N2 Y3 Urea reduction ratio QUA51 X*1 Y11 On EPO ? 1 = N 2 = Y (used if EPO dosage EPO 12 not

available)

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QUA52 N3 B12 [20 – 999]QUA53 n.n Red cell folate [0.1 – 9.9]QUA54 N2 Transferrin saturation [1 – 70]QUA55 n.n Serum Potassium (mmol/L) [2.0 8.9]QUA56 n.nn Serum Urate / uric acid (mmol/L) [0.10 – 1.19]QUA57 Nnn.n Protein : creatinine ratio (mg/mcmol) (only valid transplant patients)

QUA58 Nnn.n Albumin : creatinine ratio (mg/mcmol) (only valid transplant patients)

QUA59 nn.n Serum folate (ug/L) [0.1 – 39.9]

QUA61 N*3 Y1 Blood flow rate QUA63 X*1 Y1 Dialyser reuse 2=yes 1=no QUA64 N*1 Y1 Times per week [1-7]QUA65 N*3 Length of time on dialysis (minutes) [30 – 450] valid if HDQUA66 X*1 Bicarbonate dialysis valid if HD 2=yes 1=noQUA67 Nnn.nn Y4 Total weekly fluid vol if on PD (litres) [0 - 150.00] QUA68 n.nn Y4 Bag size (litres) if on PD [0.25 - 9.5]QUA80 Code Statin drug use (valid Y/N)QUA81 Code Ace inhibitor (valid Y/N)QUA82 Code Renagel (valid Y/N)QUA83 Code Lanthanum (valid Y/N)QUA84 Code Cinacalcet (valid Y/N)QUA85 Code Calcium based binder (valid Y/N)QUA86 Code Alucaps (valid Y/N)

Mandatory data qualifier if option qualifiers set for quarter - may be no data for transplant patients1 - Option flag in centre options list against data id exists QUECP option2 - QRTHB option set3 - QRTURR option set4 - QRTALU option set5 - QBP option set6 - QFERR option set7 - QALP option set8 - QPTH option set9 - QCHOL option set10 - QWGHT option set11 - QEPO option set12 - QHBA1 option set13 - QBCAR option set14 - QCal15 - QCalcC

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Monthly Treatment History - QBL Data Block This is a block similar to the current quarterly block (QUA) for which items are extracted as last in the quarter without a date attached. This new block extracts items as the last in each month for the 3 months of the quarter (M1,M2,M3) but additionally has dates attached to laboratory data. If there is no data for that specific month, the field MUST be left blank It is envisaged that sites will convert over the next two years to replacing QUA block with QBL block. Both blocks may be sent initially.

For patients on HD all laboratory measurements are PRE Dialysis unless otherwise stated Field ID Data

TypeMand Description

QBL00 D Y Start date of periodQBL01 D Y End date of periodQBL02 Code Y Detailed treatment modality code- (code list RR7)QBL03 X*1 Additional Haemo flag on PD 1=N 2=YQBL04 Code Y Treatment centre code (code list RR1 + Satellite code list)QBL05 Code Treatment supervision code (code list RR8)QBL07 Code Sending Hospital code – same as PAT01 (Code list RR1)QBL09 Y Monthly version of primary / secondary centre flagQBLA1 N4 Serum creatinine (umol/l) Pre HD/PD [20-2500]QBLA2 D Date of serum creatinineQBLA3 nn.n Serum urea (mmol/l) Pre Dialysis if on HD/PD [1-199]QBLA4 nn.n Serum bicarbonate (mmol/l) [5.0-49]QBLA5 D Date of bicarbonateQBLA6 N3 Serum sodium (mmol/l) [90-170]QBLA7 D Date of sodiumQBLA9 n.n Serum potassium (mmol/l) [2.0-8.9]QBLAA D Date of potassiumQBLAB N3 Lab-calculated eGFR [0-120]QBLAC n.nn Serum uric acid (urate) (mmol/l) [0.10-1.19]QBLAD D Date of serum uric acid (urate)QBLB1 n.nn Serum phosphate (mmol/l) [0.20-5.50]QBLB2 D Date of serum phosphateQBLB3 n.nn Serum calcium (mmol/l) [1.00-4.90]QBLB4 n.nn Corrected serum calcium(mmol/l) [1.00-4.90]QBLB5 Nnnn Serum alkaline phosphatase (iu/L) QBLB6 D Date of serum alkaline phosphataseQBLB7 Nn Serum albumin (g/L) [10-60]QBLB8 D Date of albuminQBLB9 Nnn.n Serum parathyroid hormone (iPTH) (pmol/L) [0.1-500]

pmol/L=ng/L /9.8QBLBA D Date of iPTHQBLC1 Nnn.n Urine protein:creatinine ratio (mg/mcmol)QBLC2 D Date of urine protein:creatinine ratioQBLC3 Nnn.n Urine albumin:creatinine ratio (mg/mcmol)QBLC4 D Date of urine albumin:creatinine ratioQBLD1 nn.n Total serum cholesterol (mmol/l) [1.0-22.0]QBLD2 D Date of serum cholesterol

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QBLD3 nn.n Serum HDL cholesterol (mmol/l) [0.1-4.9]QBLD4 nn.n Serum LDL cholesterol (mmol/l) [0.1-4.9]QBLD5 nn.n Serum triglycerides (mmol/l) [1.0-39.9]QBLD6 N3 CRP (mg/L) [0-199]QBLD7 D Date of CRPQBLD8 nn.n HbA1c % [3.0-25]QBLD9 D Date of HbA1cQBLDA nnn HbA1c (mmol/mol)[ 5 – 299]QBLE1 nn.n Haemoglobin (g/dL) [3.0-20.0]QBLE2 D Date of FBC /haemoglobinQBLE3 nn.n MCH (g/dl) [19.1-39.9]QBLE4 N3 Platelets (109/L) [100-600]QBLE5 nnn.n WBC (109/L) (from full blood count)QBLF1 N4 Serum ferritin (ug/L=ng/ml) [1-8000]QBLF2 D Date of serum ferritinQBLF3 N2 Transferrin saturation %[1 – 70]QBLF4 D Date of transferrin saturationQBLF5 nn.n Percentage hypochromic red cells % [0.1-20.0]QBLF6 D Date of hypochromic red cellsQBLF7 N3 Serum B12 [20-999]QBLF8 D Date of B12QBLF9 nn.n Serum folate (ug/L) [0.1 – 39.9]QBLFA D Date serum folateQBLFB n.n Red cell folate (0.1 – 9.9)QBLFC D Date red cell folateQBLFD N3 Serum aluminium (mg/L) [0-180]QBLFE D Date of aluminiumQBLG1 nnn.n Weight (kg) [1.0-150.0]QBLG2 D Date of weightQBLG3 N3 Systolic BP, (Pre Dialysis if on HD/PD ) [60-300]QBLG4 N3 Diastolic BP, (Pre Dialysis if on HD/PD) [35-200]QBLG5 D Date of BPQBLG6 N3 Post-dialysis Systolic BP (valid only if HD) [60-300]QBLG7 N3 Post-dialysis Diastolic BP (valid only in HD) [35-200]QBLG8 D Date of post-dialysis blood pressure (valid only in HD) QBLG9 N2 Urea reduction ratio (valid only in HD)QBLGA D Date of urea reduction ratio (valid only in HD)QBLH1 Nnn Blood flow rateQBLH2 N HD times per week [1-7]QBLH3 N3 Length of time on dialysis (minutes)QBLJ1 N6 Total weekly fluid volume (litres), valid if PDQBLJ2 N3 Bag size (litres), valid if PDQBLK1 Code Statin drug use (valid Y/N)QBLK2 Code Ace inhibitor (valid Y/N)QBLK3 Code Angiotensin Receptor Blocker (valid Y/N)QBLK4 Code Oral B blocker (eye drops excluded)QBLK5 Code Renagel (valid Y/N)

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QBLK6 Code Lanthanum (valid Y/N)QBLK7 Code Cinacalcet (valid Y/N)QBLK8 Code Calcium based binder (valid Y/N) (carbnonate/ acetate)QBLK9 Code Alucaps (valid Y/N)QBLZZ N2 QBL counter valid month1,2,3

Hospital Admission - HOS Data Block if centre option is set - may be no admissions however

Field ID DataType

Mand Description

HOS00 D Y Date of admissionHOS01 D Y Date of dischargeHOS10 Code Y Primary admission diagnosis code (ICD10)HOS11 Code 2nd admission diagnosis code(ICD10)HOS12 Code 3rd admission diagnosis code(ICD10)HOS13 Code 4th admission diagnosis code(ICD10)HOS14 Code 5th admission diagnosis code(ICD10)HOS15 Code Primary procedure code (OPCS)HOS16 Code 2nd procedure code(OPCS)HOS17 Code 3rd procedure code(OPCS)HOS18 Code 4th Procedure code(OPCS)

BAPN Paediatric – PAE

Field ID DataType

Mand Description

PAE00 D Y Start date of periodPAE01 D Y End date of periodPAE02 N*5 Y Height cm 12-240PAE03 Nnn.n Y Weight kg 1.5-199PAE04 N* Growth Hormone (Iu/kg)

KT/ V or Urea reduction ratio calculation - KTV Data Block valid if QKTV option is set and patient is on Haemodialysis

Field ID DataType

Mand Description

KTV00 D Y Start of PeriodKTV01 D Y End of PeriodKTV10 nnn.n Y Pre-dialysis Urea [10.0-199.0]KTV11 Nnn.n Y Post-dialysis urea [< pre-dialysis & >5]KTV12 Nnn.n Y Pre-dialysis weight[1.5-199]KTV13 Nnn.n Y Post-dialysis weight [pre-dialysis + 5 & >1.5 ]KTV14 N3 Y Blood flow rate (ml/min) [20-700] KTV15 N3 Y2 Dialysate flow rate [200-999] (Default 500)KTV17 N3 Y Time on dialysis minutes [60 360]

14


KTV18 N*2 N Residual renal clearance [0-99]KTV20 Code Pre/Post Indic for wt in Kt/V calc (PRE,PST)KTV21 Nnn.n Weight in kilos for PD calc (1.5-199.9)KTV22 N3 Dialysate Urea mmol/l KTV23 N3 Urine Urea mmol/l KTV24 N3 Blood Urea mmol/lKTV25 N5 Dialysate Kt/VKTV26 N5 Urine Kt/VKTV27 N6 Dialysate Effluent Vol /litrKTV28 N6 Urine Volume (litres)KTV29 N4 Combined Kt/VKTV30 Code Urine Indicator (valid Y/N)KTV31 N4 Normalized protein catabolicKTV32 N3 24hr protein LossKTV33 N4 Dialysate Creatinine (umol)KTV34 N5 Urine Creatinine (umol)KTV35 N4 Serum Creat (umol) KT/VKTV36 N3 Weekly Normalized Creatinine Clearance Calculated from formulaKTV37 N4 Creatinine Dialysate:Plasma ratio (4 hrs)KTV38 N4 Dialysate glucose at end of dwell : Dg at inflow(4 hrs):

Mandatory data qualifier 1 - DIALMAKE option set 2 - DIALFLOW option set

Treatment Time line - TXT Data Block(s)

Field ID DataType

Mand Description

TXT00 D Y Date start treatmentTXT01 D Date end treatment - default to day before next startTXT02 Code Y Treatment modality code (code list RR7)TXT03 X*1 Additional haemo flag on PD 2=yes 1=no

valid only if on PDTXT04 Code Reason for treatment change (Code list RR11)TXT10 Code Y1 Access for haemodialysis (code list VA02)TXT12 Code Y1 Site of Haemodialysis access (VA41)TXT14 N3 Y1 Blood flow rate TXT16 N1 Y1 Times per week (1-7)TXT17 N3 Length of time on dialysis (minutes 30 - 360)

valid only if HDTXT18 X*1 Bicarbonate dialysis 2=yes 1=no valid only if HDTXT20 Code Y Treatment site/centre code - may be satellite centre

(RR1+Satellite codes)TXT21 Code Y1 Supervision of haemodialysis (RR8)TXT30 Nnn.nn Y4 Total weekly fluid vol (litres) if on PD

[range 0 - 150.00 ]TXT31 n.nn Y4 Bag size (litres) if on PD [range 0.25 - 9.5 ]TXT99 N2 Y Treatment sequence indicatorMandatory data qualifiers 1 - if on Haemodialysis & invalid if on PD

15


4- if on PD and PDVOL option flag set

Haemodialysis session - QHD Data from every haemodialysis session during a quarter should be collected where possible.Each session has a unique date attachedThere should be approx 20-39 nested returns for each quarter(depending upon no of dialysis sessions in the quarter)

Prefix Field type

Fl Description

QHD00 D Date of HD sessionQHD01 Nnn.n Pre HD weightQHD02 N3 Pre HD systolic BPQHD03 N3 Pre HD diastolic BPQHD11 Nnn.n Post HD weightQHD12 N3 Post HD systolic BPQHD13 N3 Post HD diastolic BPQHD19 C Symptomatic hypotension Y/ NQHD20 C Vascular access AVF/ AVG/ TLN / NLN /VLPQHD21 Code Vascular Access Site (code list VA41)QHD99 N2 HD block nested loop counter

Transplant waiting list status – TXP data block

Prefix Field type

Fl Description

TXP00 D Date of transplant waiting list status changeTXP01 Code Waiting list status (Code list RR9)TXP99 Txp block nested loop counter

Vascular accessCollection of data to monitor dialysis access is currently being piloted and is also part of the DH national renal dataset. To comply with the national audit blocks ACL, ACC and ACP + data items PAT25, PAT29, PAT33, ERF00, ERF12, QHD20, QHD21 must be sent to the Renal Registry.

Dialysis Access - Referral data – ACL data block (Vascular Access)

Multiple occurrences of this table are permittedField ID Data

TypeMand Description

ACL01 D Date first seen in access clinicACL02 D Date put on waiting list for access surgery

ACL06 D Y Vascular laboratory referral dateACL07 D Vascular laboratory appointment dateACL10 D Y Date of referral for access construction 1ACL11 D Date scheduled access Construction/insertion 1ACL12 D Date of referral for access construction 2ACL13 D Date scheduled access Construction/insertion 2ACL14 Nnn Y Serum Creatinine on date of referral for access constructionACL15 D Y Date of Serum Creatinine @Referral for Access(ACL14)ACL99 N Counter incremented for occurence

16


ACL14 should be Serum Creatinine on date closest to the earliest date of referral for Access Construction (ACL10) if date ACL10 is earlier than Date of 1st ERF Treatment (ERF00)There are 2 Referral & Scheduled dates in ACL block because some patients have a referral to have 2 different types of access put in eg graft + PD catheter as it is likely that they need dialysis before Vascular graft/fistula is patent/usable.

Dialysis Access details – ACC data blockMultiple occurrences of this table are permitted – there should be 1 for each Access

Field ID DataType

Mand Description

ACC10 D Y Date of referral for access constructionACC11 D Y Date of access Construction/insertionACC12 Y Type of Access (Code list VA02)ACC13 Code Y Anatomical Side of access (Code table VA40)

Only valid for HDACC14 Code Y Site of access (Code list VA41) Only valid for HDACC15 Code Anaesthetic method (Code list VA42)ACC18 Code Graft material / PD cath type (Code list VA56)ACC19 D Y Date access FIRST used for dialysis (must be > ACC11)ACC20 D Date of access failure (must be > ACC11)ACC21 D Date of removal (must be > ACC11)ACC22 Code Reason for removal of access (Code list VA91)

Mandatory if ACC21 is present

ACC30 Code PD catheter Insertion technique (Code list VA143)ACC31 Nnn Y Serum Creatinine on date of Access ConstructionACC32 D Y Date of Serum Creatinine (ACC31)@ date of Access

Construction

ACC99 Counter incremented for occurrence ACC31 is Serum Creatinine on date closest to date of Access construction

Dialysis Access Event – ACP data blockThis following table can have multiple occurrences but MUST be linked via item ACP00 to item ACC11+12 in the previous table

Field ID DataType

Mand Description

ACP00 D Y Date of access construction (linked from ACC11+ACC12)ACP01 Code Type of Access tabled (linked from ACC12)(Code list VA02)ACP10 D Date of access Surveillance/ Complication / RevisionACP11 Code Event ; Surveillance / Complication / Revision (code S/C/R)ACP12 Code Detail of surveillance / complication / revision

(Code Tables VA46, VA49,VA43)

ACP22 Code Microbiology result (Code list VA92)ACP32 Code Optional anatomical location of access revision if not already

explicit (Code list VA41)ACP99 Counter incremented for occurrence

17


Peritonitis - PER Data block(s)

Field ID DataType

Mand Description

PER00 D Y Date start treatmentPER01 D Y Date end treatment - default to day before next startPER10 Code Organism 1 (code list VA92)PER11 Code Organism 2 (code list VA92)PER20 N*4 WBC count [0-9999]PER21 X*1 Intra peritoneal antibiotics (1 = N 2 = Y)PER22 X*1 iv antibiotics (1 =N 2 = Y)PER99 N*2 Peritonitis sequence counter

Transplant follow up - TRA Data Block required for UKT

Field ID DataType

Mand Description

TRA00 D Y Date of fileTRA10 X*1 Y Imm sup Azathioprine (Y /N )TRA11 X*1 Y Imm Sup Ciclosporin (Y /N )TRA12 X*1 Y Imm sup steroids (Y /N )TRA13 X*1 Imm sup OKT3 (Y /N )TRA14 X*1 Imm sup ATG (Y /N )TRA15 X*1 Imm sup ALG (Y /N )TRA16 X*1 Imm sup Tacrolimus (Y /N )TRA17 X*1 Imm sup Mycophenolate (Y /N )TRA18 X*1 Imm sup other (Y /N )TRA19 X*1 Imm sup Sirolimus (Y /N )TRA60 X*2 Y Organ transplanted (K / P /KP) TRA65 Code Cause of failure if TRA63 = 2 (Code list RR10 -UKT codes) TRA66 C*70 Description of failureTRA69 D Date graft nephrectomy if graft failed >= graft date

Immuno suppression dose – IMM Data block

Field ID DataType

Mand Description

IMM00 D Y Date of quarter endIMM10 N3 Azathioprine Daily dose mg [0-200] IMM11 N3 Ciclosporin mg Daily dose [0-999]IMM21 N4 Ciclosporin level [0-800] IMM12 Nnn.n Prednisolone Daily dose mg [0-999.9]IMM13 N3 OKT3 total dose (mg) [2-10]IMM14 N3 ATG total dose mg [50–500]IMM15 N3 ALG total dose mgIMM16 N2 Tacrolimus Daily dose [1– 20]IMM17 N3 Mycophenolate Daily dose [25 –600]

18


IMM18 nn.n Sirolimus Daily dose mg [0.5-12]

It cannot be assumed that the data blocks within a set of patient data will appear in any set order (other than having the patient details themselves at the beginning). Furthermore the ordering of the fields within a particular block is not subject to any rule of precedence. It is also possible that the field labels for non-mandatory data items may appear without any accompanying value field.

Administration – ADM data block

Field ID DataType

Mand Description

ADM00 D Y Date of detailsADM01 Code Y Centre Code – May be satellite Centre (Code list RR1)ADM10 N2 Y No dialysis stations [1 – 90] ADM11 N2 In patient dedicated renal beds [0 –40]ADM12 N1 Y No dialysis shifts per week range [1 –5]ADM13 N3 Y No dialysis sessions pre week [1 –400]

19


CODE LISTS

Hospital Centre RR1

Hospital code Hospital name Hospital locationSNC01 Aberdeen Royal Infirmary AberdeenSLC01 Monklands Hospital Airdrie24027 Antrim Hospital AntrimRQBAU Ysbyty Gwynedd BangorRDDH0 Basildon Hospital Basildon2020 Belfast City Hospital Belfast11023 Royal Belfast Hospital for Sick Children Belfast7021 Ulster Hospital BelfastRQ3 Birmingham Childrens Hospital BirminghamRL7 Heartlands Hospital BirminghamRRK02 Queen Elizabeth Hospital BirminghamRAE05 St Lukes Hospital BradfordRGU01 Royal Sussex County Hospital BrightonREE01 Southmead Hospital BristolRA723 Bristol Royal Hospital for Children BristolRGT01 Addenbrookes Hospital CambridgeRVVKC Kent & Canterbury Hospital CanterburyRRBBV University Hospital of Wales CardiffRWM51 Children's Kidney Centre - UHW CardiffRLGAY Cumberland Infirmary CarlisleRAZ St Helier Hospital CarshaltonRQ8L0 Broomfield Hospital ChelmsfordRDEE4 Colchester General Hospital ColchesterRKB01 Walsgrave Hospital CoventryRFPFG Royal Derby Hospital DerbyRP5 Doncaster Royal Infirmary DoncasterRBD01 Dorset County Hospital DorchesterRNA03 Russells Hall Hospital DudleySYC02 Dumfries & Galloway Royal Infirmary DumfriesSTC01 Ninewells Hospital DundeeSFC01 Queen Margaret's Hospital DunfermlineSSC02 Royal Infirmary of Edinburgh (New Royal) EdinburghRH8 Royal Devon and Exeter Hospital (Wonford) ExeterSGC05 Glasgow Royal Infirmary & Western Infirmary GlasgowSGC04 Western Infirmary Glasgow GlasgowSGC02 Royal Hospital for Sick Children GlasgowRH641 Gloucester Royal Hospital GloucesterRF201 Hull Royal Infirmary HullSHC01 Raigmore Hospital InvernessRGQ02 Ipswich Hospital IpswichSAC02 Crosshouse Hospital KilmarnockRQR13 St James's University Hospital Leeds99RQR13 St James's University Hospital - Paediatric LeedsRQS01 Leeds General Infirmary LeedsRFBAK Leicester General Hospital LeicesterRQ617 Royal Liverpool University Hospital LiverpoolRBS25 Royal Liverpool Childrens Hospital LiverpoolRW402 University Hospital Aintree Liverpool

20


RJ121 Guy's and St Thomas's Hospital LondonRQN02 Hammersmith & Charing Cross Hospital LondonRJZ King's College Hospital LondonRAL01 Royal Free & Middlesex Hospital LondonRNJ00 Barts and the London Hospital LondonRJ701 St George's Hospital LondonRJ501 St Mary's Paddington LondonRP4 Great Ormond Street Hospital for Children LondonRJ100 Guy's Hospital - Paediatric London45020 Altnagelvin Hospital LondonderryRM574 Royal Infirmary Manchester ManchesterRW3RM Royal Manchester Children's Hospital ManchesterRCJAT James Cook University Hospital MiddlesbroughRTD01 Freeman Hospital & Royal Victoria Infirmary Newcastle-upon-TyneRTD02 Royal Victoria Infirmary - Paediatric Newcastle-upon-Tyne 33020 Daisy Hill Hospital NewryRM102 Norfolk & Norwich University Hospital NorwichRCSLB Nottingham City Hospital Nottingham99RCSLB Nottingham City Hospital - Paediatric Nottingham48021 Tyrone County Hospital OmaghRNX02 Oxford Radcliffe Hospital OxfordRK950 Derriford Hospital PlymouthRHU02 Queen Alexandra Hospital PortsmouthRMF01 Royal Preston Hospital PrestonRHW01 Royal Berkshire Hospital ReadingRKGA1 Ysbyty Glan Clwyd RhylRM301 Hope Hospital SalfordRK7CC Northern General Hospital SheffieldSSG01 Gilbert Bain Hospital ShetlandRLZ01 Royal Shrewsbury Hospital ShrewsburyRHM02 Southampton General Hospital - Paediatric SouthamptonRAJ01 Southend Hospital Southend-on-SeaRAQ01 Lister Hospital StevenageRJE01 University Hospital of North Staffordshire Stoke-on-TrentRLNGH Sunderland Royal Hospital SunderlandRQHC7 Morriston Hospital SwanseaREF12 Royal Cornwall Hospital (Treliske) TruroRBL14 Arrowe Park Hospital WirralRL403 New Cross Hospital WolverhamptonRKHA4 Wrexham Maelor Hospital WrexhamRCB55 York District General Hospital York

21


Marital Status - RR2RR code Marital statusS SingleM MarriedC CohabitatingD DivorcedP SeparatedW WidowedU Unknown

Ethnicity Codes RR3

RR code, Old PAS and new PAS codes all acceptedRR Read Code

Old PAS

New PAS

9S1.. White 0 A19S2.. Black Caribbean 1 M19S3.. Black African 2 N19S4.. Black / other / non-mixed origin 3 P19S6.. Indian 4 H19S7.. Pakistani 5 J19S8.. Bangladeshi 6 K19S9.. Chinese 7 R1

9S41. Black British PD9S42. Black Caribbean9S43. Black North African9S44. Black – other African country9S45. Black East African Asian9S46. Black Indian sub-continent9S47. Black – other Asian9S48. Black Black - other PE9S5.. Black – other / mixed9S51. Other Black - Black/White orig GC9S52. Other Black - Black/Asian orig GA

9SA.. Other ethnic non-mixed (NMO)9SA1. Brit. ethnic minor. spec.(NMO)9SA2. Brit. ethnic minor. unsp (NMO)9SA3. Caribbean Island (NMO)9SA4. North African Arab (NMO)9SA5. Other African countries (NMO)9SA6. East African Asian (NMO)9SA7. Indian sub-continent (NMO)9SA8. Other Asian (NMO) L19SA9. Irish (NMO) B19SAA. Greek Cypriot (NMO) CG9SAB. Turkish Cypriot (NMO) CJ9SAC. Other European (NMO) C19SAD. Other ethnic NEC (NMO) S19SB.. Other ethnic / mixed origin 8

22


9SB1. Other ethnic / Black/White orig E19SB2. Other ethnic / Asian/White orig F19SB3. Other ethnic / mixed white orig9SB4. Other ethnic / other mixed orig G1

EDTA Primary Renal Disease (ERF) codes- RR4RR code Description0 Chronic renal failure, aetiology uncertain

10 Glomerulonephritis, histologically NOT examined11 Severe nephrotic syndrome with focal sclerosis (Paediatric)12 IgA nephropathy proven by immunofluorescence13 Dense deposit disease, membrano-prolif. GN type II14 Membranous nephropathy15 Membrano-proliferative GN type I16 Rapidly progressive GN without systemic disease (crescentic17 Focal segmental glomeruloscerosis with nephrotic syndrome in adults19 Glomerulonephritis, histologically examined

20 Pyelo/Interstitial nephritis - cause not specified21 Pyelo/Interstitial nephritis - with neurogenic bladder22 Pyelo/Interstitial nephritis - congen. obst. uropathy +/- reflux23 Pyelo/Interstitial nephritis - acquired obst. uropathy24 Pyelo/Interstitial nephritis - vesico-ureteric reflux no obstruction25 Pyelo/Interstitial nephritis - due to urolithiasis29 Pyelo/interstitial nephritis due to other cause (please specify)

30 Tubulo interstitial nephritis (not pyelonephritis)31 Nephropathy due to analgesic drugs32 Nephropathy due to cis-platinum33 Nephropathy due to Cyclosporin A34 Lead induced nephropathy (interstitial)39 Nephropathy caused by other specific drug

40 Cystic kidney disease - type unspecified41 Polycystic kidneys - adult type (Dominant)42 Polycystic kidneys - infantile (Recessive)43 Medullary cystic disease - including nephronophthisis49 Cystic kidney disease - other specified type

50 Hereditary/Familial nephropathy - type unspecified51 Hereditary nephritis with nerve deafness (Alport's)52 Cystinosis53 Primary oxalosis54 Fabry's disease59 Hereditary nephropathy - other

60 Congenital renal hypoplasia - type unspecified61 Oligomeganephronic hypoplasia63 Congenital renal dysplasia +/- urinary tract malformation66 Syndrome of agenesis of abdo. muscles - Prune Belly Syndrome

70 Renal Vascular disease - type unspecified

23


71 Renal Vascular disease due to MALIGNANT hypertension72 Renal Vascular disease due to hypertension73 Renal Vascular disease due to polyarteritis74 Wegener's granulomatosis75 Ischaemic renal disease/cholesterol embolism76 Glomerulonephritis related to liver cirrhosis78 Cryoglobulinaemic glomerulonephritis79 Renal vascular disease - classified (please specify)

80 Diabetes Type 1 (Insulin dependent)81 Diabetes Type 2 (Non-insulin dependent)82 Myelomatosis83 Amyloid84 Systemic Lupus Erythematosus85 Henoch-Schonlein purpura86 Goodpastures Syndrome87 Scleroderma88 Haemolytic Uraemic Syndrome89 Multi-system disease - type unspecified90 Cortical or tubular necrosis91 Tuberculosis92 Gout93 Nephrocalcinosis / Hypercalcaemic nephropathy94 Balkan nephropathy95 Kidney tumour96 Traumatic or surgical loss of kidney99 Other identified renal disorders - please specify

EDTA cause of Death – RR5RR CODE TITLE00 Cause of death uncertain / not determined11 Myocardial ischaemia and infraction [11]12 Hyperkalaemia [12]13 Haemorrhagic pericarditis [13]14 Other causes of cardiac failure [14]15 Cardiac arrest/sudden death; other cause or unknown [15]16 Hypertensive cardiac failure [16]17 Hypokalaemia [17]18 Fluid overload/pulmonary oedema [18]21 Pulmonary embolus [21]22 Cerebro-vascular accident, other cause or unspecified [22]23 Gastro-intestinal haemorrhage (digestive) [23]24 Haemorrhage from graft site [24]25 Haemorrhage from vascular access or dialysis circuit [25]26 Cerebral haemorrhage from ruptured vascular aneurysm (not code 22 or 23) [26]27 Haemorrhage from surgery (except digestive haemorrhage) [27]28 Other haemorrhage, other site and/or other cause [28]29 Mesenteric infarction [29]31 Pulmonary infection (bacterial) [31]32 Pulmonary infection (viral) [32]33 Pulmonary infection (fungal or protozoal; parasitic) [33]34 Infections Elswhere (except viral hepatitis)35 Septicaemia [35]36 Tuberculosis (lung) [36]37 Tuberculosis (elsewhere) [37]38 Generalized viral infection [38]

24


RR CODE TITLE39 Peritonitis (all causes except for Peritoneal Dialysis) [39]41 Liver disease due to hepatitis B virus [41]42 Liver disease due to other viral hepatitis [42]43 Liver disease due to drug toxicity [43]44 Cirrhosis - not viral (alcoholic or other cause) [44]45 Cystic liver disease [45]46 Liver failure - cause unknown [46]51 Patient refused further treatment for ERF [51]52 Suicide [52]53 ERF treatment ceased for any other reason [53]54 ERF treatment withdrawn for medical reasons [54]61 Uraemia due to graft failure62 Pancreatitis [62]63 Bone marrow depression (Aplosia) [63]64 Cachexia [64]66 Malignant disease in patient treated by immunosuppressive therapy [66]67 Malignant disease: solid tumors except those of 66 [67]68 Malignant disease: lymphoproliferative disorders (Except 66) [68]69 Dementia [69]70 Peritonitis (sclerosing, with peritoneal dialysis) [70]71 Perforation of peptic ulcer [71]72 Perforation of colon [72]73 COPD [73]81 Accident related to ERF treatment (not 25) [81]82 Accident unrelated to ERF treatment [82]99 Other identified cause of death [99]100 Peritonitis (bacterial, with peritoneal dialysis) [100]101 Peritonitis (fungal, with peritoneal dialysis) [101]102 Peritonitis (due to other cause, with peritoneal dialysis) [102]

EPO drugs - RR6Read Code Drug name Other namei44.. Erythropoietin alpha Eprexi45.. Erythropoietin beta NeorecormonZi45x Darboepoietin AranespZi45y Methoxy polyethylene glycol-epoetin beta MirceraZi45w Erythropoietin delta DynepoZi44z Erythropoietin NOSZi45v Erythropoietin zeta Retacrit

25


Treatment timeline – Modality codes RR7EDTA code

RR code RR code Description

TXT Timeline

QUA/QBLTreatment

1 1 1 Haemodialysis2 2 2 Haemofiltration3 3 3 Haemodiafiltration1 4 4 Haemodialysis > 4 days per week / daily4 5 5 Ultrafiltration4 9 9 Haemodialysis – type unknown5 10 10 CAPD connect5 11 11 CAPD disconnect6 12 12 Cycling PD >= 6 nights/wk dry 6 13 13 Cycling PD < 6 nights /wk dry6 14 14 Cycling PD >= 6 nights/wk wet (day dwell)6 15 15 Cycling PD < 6 nights /wk wet (day dwell)

16 16 Assisted Cycling PD >=6 nights/wk dry17 17 Assisted Cycling PD >=6 nights/wk wet (day dwell)

7 19 19 Peritoneal dialysis – type unknown8 20 20 Transplant ; Cadaver donor9 21 21 Transplant ; Live related – sibling

10 22 22 Transplant ; Live related – parent or child 23 23 Transplant ; Live related – other

11 24 24 Transplant ; Live genetically unrelated12 25 25 Transplant ; Cadaver donor + transp other organ13 26 26 Transplant ; Live donor + transplant other organ

27 27 Transplant ; Live donor non-UK transplant8 28 28 Transplant ; non-heart-beating donor

14 29 29 Transplant ; type unknown30 Graft failure31 Graft acute rejection episode - biopsy proven32 29 Graft acute rejection episode - no biopsy35 29 Transfer in pre-emptive transplant 36 Transfer out pre-emptive transplant 37 Transfer to adult nephrology

15 38 Patient transferred out16 39 Transfer in from another centre treatment unknown16 41 1 Transfer in on : Haemodialysis16 42 2 Transfer in on : Haemofiltration16 43 3 Transfer in on : Haemodiafiltration16 44 4 Transfer in on : Haemodialysis > 4 days per week16 45 5 Transfer in on : Ultrafiltration16 49 9 Transfer in on : Haemodialysis – type unknown16 50 10 Transfer in on : CAPD connect16 51 11 Transfer in on : CAPD disconnect16 52 12 Transfer in on : Cycling PD >=6 nights/wk with without bag16 53 13 Transfer in on : Cycling PD < 6 nights /wk dry16 54 14 Transfer in on : Cycling PD >= 6 nights/wk wet (day dwell)16 55 15 Transfer in on : Cycling PD < 6 nights /wk wet (day dwell)16 56 16 Transfer in on: Assisted Cycling PD >=6 nights/wk dry16 57 17 Transfer in on: Assisted Cycling PD >=6 nights/wk wet (day dwell)16 59 19 Transfer in on : Peritoneal dialysis – type unknown16 60 20 Transfer in on : Transplant ; Cadaver donor16 61 21 Transfer in on : Transplant ; Live related – sibling

26


EDTA code

RR code RR code Description

TXT Timeline

QUA/QBLTreatment

16 62 22 Transfer in on : Transplant ; Live related – parent or child 16 63 23 Transfer in on : Transplant ; Live related – other16 64 24 Transfer in on : Transplant ; Live genetically unrelated16 65 25 Transfer in on : Transplant ; Cadaver + transp other organ16 66 26 Transfer in on : Transplant ; Live donor + transp other organ

68 28 Transfer in on : Transplant ; non-heart-beating donor16 69 29 Transfer in on : Transplant ; type unknown

72 Graft functioning76 Nephrectomy - transplant79 Transplant pancreas (only)80 Acute renal failure not dialysed81 Acute haemodialysis – ARF82 Acute haemofiltration – ARF83 Acute peritoneal dialysis – ARF84 ARF recovered85 ARF - stopped dialysis (without recovery of function)86 ARF – transferred out

18 90 Patient – renal function recovered91 Patient – treatment stopped (without recovery of function)92 Treatment stopped without recovery - conservative management93 Conservative Management - mutual decision not to offer RRT94 Clinical Decision not to offer RRT - conservative management

17 95 Patient lost to follow upDied

Any code without a number in the RR TXT code column is NOT sent by the extraction software to the Renal Registry :- i.e. DiedDo not send QUA or QBL blocks for codes with no numbers in RR QUA, QBL column

Treatment Supervision Codes – RR8RR code TextHOSP HospitalHOME HomeSATL Satellite

Transplant Waiting List Codes - RR9RR Code

Description

A1 Active on kidney listA2 Active on K-P list at this siteA3 Active on K-P list elsewhere OxfordA5 Active on urgent transplant listA6 Active with failing graft S1 Temp suspended holidayS2 Temp suspended unfitS3 Temp suspended working up fitnessT1 Transplanted cadavericT2 Transplanted Live T3 Transplanted outside EU

27


R1 Removed unfitR2 Removed at patients requestR3 Removed working up for live transplantR9 Removed diedN1 Not listed at patients requestN2 Not listed unfitN3 Not listed working up for live transplantN9 Not listed no reasonW0 Working up for fitness

For TXP block (loosely based on UKTSSA codes)

Causes of Graft Failure – RR10 ( UKT Codelist)RR Code

Rejection10 Hyperacute rejection11 Non viable transplant kidney11 Primary non function of transplant kidney11 Acute rejection11 Chronic allograft nephropathy11 Rejection following withdrawal of immunosuppression - non compliance16 Rejection following withdrawal of immunosuppression - medical reason

Intrinsic renal disease20 De novo glomerulonephritis21 Interstitial nephritis - viral - BKV22 Interstitial nephritis - viral - other23 Interstitial nephritis - drug induced24 Interstitial nephritis - other25 Transplant pyelonephritis26 Calcineurin inhibitor nephrotoxicity27 Non calcineurin inhibitor drug toxicity28 Recurrent primary renal disease

Technical40 Obstruction of transplant kidney41 Transplant arterial thrombosis42 Transplant venous thrombosis43 Transplant infarction - cause unknown44 Transplant renal artery stenosis45 Surgical removal of transplant46 Surgical trauma to transplant47 Non surgical trauma to transplant kidney48 Haemorrhage post transplant biopsy

Other70 Malignant disease of the transplant kidney/ureter71 Malignant disease - other90 Death with functioning graft98 Other99 Unknown

Reasons for change of treatment –RR11(uses prefix=%RR=)This group is prefixed by 200RR Code PD to Haemodialysis201 Patient /partner choice202 Loss of supporting partner

28


203 Other change of personal circumstances204 Inability to perform PD205 Other reasons211 Frequent / Recurrent peritonitis with or without loss of UF212 Unresolving peritonitis213 Catheter loss through exit site infection214 Loss of UF215 Inadequate clearance216 Abdominal surgery or complications

RR Code Haemodialysis to PD221 Patient / partner choice222 Loss of supporting partner223 Other change of personal circumstances224 Lack of HD facilities225 Other reasons231 Loss of vascular access232 Haemodynamic instability233 Elective after temporary HD

29


Vascular Access Codes VA02 – VA143

VA02 Access TypeRRcode Description IC CodeNLN Non-tunnelled line 1TLN Tunnelled Line 2AVF Arteriovenous fistula 3AVG Arteriovenous graft 4VLP Vein loop 5PDC PD catheter 6PDT PD catheter temp 7

VA03 Dominant arm -Side – handedness RRcode DescriptionR Right handedL Left handedA AmbidextrousU Unknown

VA40 Side of AccessRRcodeR RightL Left

U Unknown

VA41 Access SiteRRcode DescriptionSB Radio-cephalic Snuff boxRC Radio-cephalic wristBC Brachio-cephalicBB Brachio-basilicUC Ulna-cephalicRU Radio-ulnarPS Popliteal-long saphenousUF Forearm NOSUO OtherLJ Intenal jugular lineLS Subclavian lineLA Axillary vein lineLF Femoral vein lineTB Brachio-basilic & transpositionTS Popliteal-long saphenous & transpositionUT Thigh NOSUA Ankle

VA42 Anaesthetic

30


Rrcode DescriptionLA local anaestheticGA general anaestheticSA SpinalUk unknown

VA43 Access Revision

RRcode Description Short Screen Code

AVF 1 Radiological to fistula - Angioplasty Angioplasty balloon2 Radiological to fistula - Angioplasty with cutting balloon Angioplasty + cutting3 Radiological to fistula - Angioplasty with stent Angioplasty + stent4 Radiological to fistula - Thrombolysis Thrombolysis5 Radiological to central veins - Angioplasty Vein Angioplasty balloon

6Radiological to central veins - Angioplasty with cutting balloon Vein Angioplasty + cutting

7 Radiological to central veins - Angioplasty with stent Vein Angioplasty + stent8 Radiological to central veins - Thrombolysis Vein Thrombolysis9 Surgical - Surgical correction with jump graft Arterial Jump Graft

10 Surgical - Surgical correction with vein patch AVF vein patch11 Surgical - Banding of arteriovenous fistula AVF banding12 Surgical - Thrombectomy of fistula/graft AVF/G Thrombectomy13 Surgical - Ligation of AVF AVF ligation14 Surgical - Evacuation of haematoma Haematoma evac15 Surgical dilatation of AVF/G AVF/G dilatation16 Surgical transposition of established AVF AVF transpose17 Rotary Angioplasty Rotary angioplasty18 Surgical - Pseudoaneurysm repair AVF aneurysm repair19 Surgical - Refashioning of arteriovenous fistula AVF repair NOS20 Surgical - Drill procedure for STEAL syndrome Drill for Steal Synd21 Medication - Thrombolysis Thrombolysis iv

AVG 23 Surgical - Surgical revision of graft AVG repair24 Surgical - Excision of AV graft AVG removal

Line 25 Brushing of central line Line Brush26 Repositioning central line by endovascular snare Line reposition27 Removal of central line Line removal

PD 28 Repositioning of PD catheter PD reposition29 Removal of PD catheter PD removal30 Omentectomy Omentectomy31 Cuff shaving & reposition PD cuff shave / repositn

31


32 Immediate replacement Immediate replacement

VA46 SurveillanceRR Code Description

41 Clinical examination42 Reduction in dialysis adequacy43 Static venous pressure measurement44 Blood flow rate assessment45 Recirculation measurement46 Duplex ultrasonography47 Radiological Assessment48 Doppler49 Other

VA49 Access ComplicationsRR code Description

HD 61 stenosis62 infection63 aneurysm64 pseudoaneurysm65 rupture66 AVF thrombosis67 Steal syndrome68 Heart failure69 Haemorrhage70 Infected exit site71 Septicaemia72 Endocarditis73 Inadequate flow74 Venous occlusion75 Venous perforation76 Pneumothorax77 Air embolism78 Malposition of AVG79 Compartment syndrome

PD 80 Subcutaneous haematoma81 Tunnel infection82 Peritonitis83 Subcutaneous leak84 Peritoneal leak85 Peritoneo-pleural leak86 Inadequate inflow - Malposition87 Inadequate inflow - Fibrin88 Inadequate inflow - Omental wrap89 Inadequate outflow - Malposition

32


90 Inadequate outflow - Fibrin91 Inadequate outflow - Omental wrap92 Hernia93 Catheter fell out94 Externalisation of the cuff95 EPS encapsulating peritoneal sclerosis96 Bowel Perforation

VA56Graft material / PD Catheter type

RR Code Description

AVG 1 Polytetrafluoroethylene (PTFE/ Gortex)2 Bovine graft3 Dacron4 Multi-laminate

PD 5 Straight PD catheter6 Coiled PD catheter

VA91 Removal ReasonRR Code Description

4 Venous thrombosis5 Use of alternative vascular access6 Recovery of renal function7 Switched to PD8 Switched to HD9 Renal transplantation

10 Accidental removal11 As per Access complication

VA92 MicrobiologyRR Code Description

1 MRSA2 MSSA3 E Coli4 Fungal8 Other

VA143PD Catheter Insertion Technique

RR Code Description

1 Open surgery2 Laparoscopic3 Percutaneous4 Peritoneoscopic

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Comorbidity Definitions – ERF20 – ERF41 & COM21 – COM44RR Data item

Co-morbidity Definitions

ERF20COM20

Angina History of chest pain on exercise with or without ECG changes, ETT, radionucleotide imaging or angiography.

ERF21COM21

Previous MI within last 3 months

The rise and fall of a biomarker ( CK, CK-MB or Troponin) together with one of either :- ischaemic symptoms, pathologic Q waves, ischaemic ECG changes or a coronary intervention. The definition is from the European Society of Cardiology and American College of Cardiology.

ERF22COM22

Previous MI > 3 months ago 3c months prior to the start of renal replacement therapy

ERF23COM23

Previous CABG or coronary angioplasty

ERF24COM24

Episode of heart failure This is whether or not it was only due to fluid overload (new 2003)

ERF30COM30

Smoking Current smoker or history within the last year

ERF31COM31

Chronic Obstructive Pulmonary Disease

This is defined as a slowly progressive airways disorder characterised by obstruction of the expiratory airflow which does not change markedly over several months, may be accompanied by airways hyper-reactivity and may be partially reversible

ERF32COM32

Cerebrovascular disease Any history of strokes (whatever cause) and including TIA caused by carotid disease

ERF33COM33

Diabetes (not causing ESRF) This includes diet controlled and drug induced diabetics

ERF34COM34

Malignancy Defined as any history of malignancy (even if curative) e.g. removal of melanoma, excludes basal cell carcinoma

ERF35COM35

Liver Disease Persistent enzyme evidence of hepatic dysfunction OR Biospy evidence OR HbeAg or hepatitis C antigen (polymerase chain reaction) positive serology

ERF40COM40

Claudication Current claudication based on a history, with or without Doppler or angiographic evidence

ERF41COM42

Ischaemic/Neuropathic ulcers Current presence of these ulcers

ERF42COM43

Angioplasty, stenting, vascular graft (all non coronary)

This category now includes vascular grafts (eg aortic bifurcation graft) and any non-coronary arterial stent

ERF43COM44

Amputation for Peripheral Vascular Disease

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Karnofsky performance status scale definitions rating (%) criteria

Able to carry on normal activity and to work; no special care needed.

100 Normal no complaints; no evidence of disease.90 Able to carry on normal activity; minor signs or symptoms of disease.80 Normal activity with effort; some signs or symptoms of disease.

Unable to work; able to live at home and care for most personal needs; varying amount of assistance needed.

70 Cares for self; unable to carry on normal activity or to do active work.

60 Requires occasional assistance, but is able to care for most of his personal needs.

50 Requires considerable assistance and frequent medical care.

Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly.

40 Disabled; requires special care and assistance.

30 Severely disabled; hospital admission is indicated although death not imminent.

20 Very sick; hospital admission necessary; active supportive treatment necessary.

10 Moribund; fatal processes progressing rapidly.0 Dead

Advance notice of change in data specification to cover CKD5 patientsCurrently only data on patients from start of ERF is sent to the RR. A pilot to monitor CKD5 patients is underway and it is envisaged the following data will be included in the RR dataset from mid 2010. Data items PAT80-PAT83 are the crucial data to determine start of CKD5 and are mandatory now for all patients who had PAT82 > 31/12/05

1. QBL blocks for the 12 months prior to date of start of CKD5 (PAT82) To be sent once only if PAT82 new in the quarter.

2. QBL blocks for period Date of start of CKD5 (PAT82) – start of RRT (ERF00) or Date of Death (PAT40).QBL blocks to be sent continuously from start of CKD5 until patient is transferred out or dies.

Systems Specification to enable patient opt-out from identifiable data

Introduction

The Renal Registry complies with all the data protection legislation in the UK and Europe (see below). Under the Section 60 exemption (Health & Social Services Act 2001) granted to the Registry by the Secretary of State, patients must still be provided with a facility to withhold consent from sharing their patient identifiable data with the Registry. The Registry has produced a patient information leaflet that will be distributed by renal units informing patients of this facility to opt out.

This document specifies the IT system interface changes that are required to meet this specification. In order that the Renal Registry may monitor the opted out patients, data on these patients will need to be transmitted in a specific anonymised format. Anonymised data does not require patient consent.

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Data Protection Act 1998Data collection by the Registry falls under Schedule 3 of the Data Protection Act 1998. which allows for processing of sensitive personal information without consent. In Section 8 of this Schedule, access to personal information is allowed for necessary medical purposes, and must be undertaken by either a health professional or a person who owes a duty of confidentiality equivalent to that of a health professional (such as health researchers or statisticians). In regard to the Renal Registry, "medical purposes" includes preventative medicine, medical diagnosis, medical research, the provision of care and treatment and the management of healthcare services.

National Health Service Act 2006 section 251 (Health & Social Services Act 2001, Section 60)

Every 10 years or so, Parliament combines into a single legislative Act all the many Acts relating to the NHS and, at the same time this process repeals all the previous NHS legislation. The Health and Social Care Act 2001: section 60 legislation, is now incorporated in the National Health Service Act 2006 under section 251 (control of patient information) and is only applicable in England & Wales

The Registry has been granted temporary exemption by the Secretary of State to hold patient identifiable data under section 251 of the National Health Service Act 2006. This exemption allows the registration of identifiable patient information from renal centres without first asking the consent of each individual patient, avoiding a breach of the common law on confidentiality.

Local system screen menu changes

A new field is requiredText Description : Patient opts out of sending data to the Registry. The default value is null and the field can be set to “Y”. “N” or “NO” is NOT a valid option as consent is assumed on all patients. This flag will be transmitted in the interface via prefix IDN05.

Definitions of Additional Registry Data items – IDN05, IDN06, IDN07

Three extra data items have been added to the Renal Registry Dataset:Field

IDDataType

Mand Description

IDN05 C*1 Flag for Refused permission to send identifiable data to UKRR - “Y”

IDN06 NNNN Year of birth if IDN05 set to “Y”IDN07 C*20 Unique identifier not attributable to patient

(site code plus internal record number or some thing similar) only sent when IDN05 set to “Y” .This must be stored and accessible locally

Description of process and changes to itemsThe following items shall only be sent where the patient has opted out of sending data to the Registry.

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If IDN05 (opted out flag) has been set to “Y” then IDN05, IDN06 and IDN07 items must be sent to the Registry.

Date of Birth - IDN03 and Year of Birth IDN06IDN03 (date of birth) cannot be transmitted if the patient has opted out of sending identifiable data and an additional item IDN06, containing the year of birth shall be sent, containing all 4 digits of the year born. IDN06 (year of birth) should only be sent for an opted out patient, i.e. when the IDN05 flag is set to “Y”.

Name fields – IDN01 & IDN02For those patients who have opted outIDN01, (surname), shall be replaced by the word “CONSENT” IDN02 (forename) shall be replaced by the word “REFUSED”.

Local Hospital Number, IDN04 and non-attributable unique identifier, IDN07 IDN04 (local hospital number) shall not be returned in the data extraction but a unique identifier shall be returned as IDN07. IDN07 (opted out unique local identifier) is made up of PAT01 (hospital transmitting centre code). concatenated to an internal database number, i.e. locally non duplicable number, (in Proton the vrx internal database record number will be used). Example, Southmead Hospital in Bristol could send an IDN07 field of REE0117370, where REE01 is the NHS site code of the transmitting renal unit and 17370 is the internal database number.

This item must be stored on the local system, to be used in the next data send and must be accessible locally for reference if any data checks are required by the Registry data management team.

PAT13 (NHS number) is a unique identifying number and must not be sentPAT12 (CHI number in Scotland) is a unique identifying number and must not be sent

Address Lines PAT20, PAT21, PAT22 and Postcode PAT23 PAT20 (Address line 1) must not be sentPAT21 (Address line 2) must not be sentPAT22 (Address line 3) must not be sentPAT23 (postcode) must be replaced by the first half of the postcode only

Load Renal Registry NumbersThe Renal Registry will still allocate a unique ID number to the patient (IDN00).

The local patient matching routine to load Renal Registry numbers will need to be altered to take into account those patients who have refused consent to send their identifiable data to the Registry. The returned file from the Registry will not have a hospital ID number or name or date of birth in the returned file. In the returned file, those patients with a surname = consent and forename -= refused, a routine will need to be written where the Renal Registry number is uploaded solely on a match with the value set in IDN07.

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IDN07 will be sent in the comma delimited rrno.dat load file as field number 9

Summary List of Items not to be transmittedThe data extraction routine will be modified so that when the patient has refused permission to send identifiable data to the renal registry the items listed below shall not be extracted.

Field ID

DataType

Mand Description

IDN01 S*20 Patient surname sent as “consent”IDN02 S*20 Patient Forename sent as “refused”IDN03 D Date of BirthIDN04 C*15 Local Hospital NumberPAT12 C*15 Super CHI number – ScotlandPAT13 C*12 New NHS number format nnn nnn nnnn or without

the spacesPAT20 S*40 Address line 1PAT21 S*40 Address 2PAT22 S*40 Address 3PAT23 P Postcode (uses postcode validation software) 1st part

of postcode allowed

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AMENDMENTS – Version Control

AMENDMENTS to Version 3.12 (26th October 2009) Change dataset

A new quarterly data block (QBL) added to provide MONTHLY data collection and dates of laboratory tests. This brings the RR dataset into line with NRD.

Monthly Treatment History - QBL Data Block This is an additional block to the current quarterly block (QUA) where items are extracted as last in the quarter without a date attached. This new block extracts items as at the end of each month (M1,M2,M3) in the quarter but additionally has dates attached to laboratory data. It is envisaged that sites will convert over next two years to replacing QUA block with QBL block. Both blocks should be sent initially. Data still to be sent quarterly.Definition of block p 12

IDN BlockIncreased length of field IDN07 from C15 to C20 to accommodate longer identifier

IDN07 C*20 Unique identifier not attributable to patient (site code plus internal record number or some thing similar) only sent when IDN05 set to “Y” .This must be stored and accessible locally

EPO BlockEPO02 N*5 Y1 EPO dosage per week NO LONGER USED ( now sent as

EPO12)EPO11 Code Code added for Mirocera (Code list RR6)EPO13 Code iv/im/sc (Code for subcutaneous inj added = sc)

Treatment Modality timeline codesAdditional codes added to codelist for non UK transplants and Pre-emptive transplants

Code Description27 Transplant ; Live donor non-UK transplant35 Transfer in pre-emptive transplant 36 Transfer out pre-emptive transplant

Quarterly Treatment Block QUA Item deletedQUA60 Code R Y1 Dialyser used

KTV BlockItem deletedKTV16 Code Y1 Dialyser make

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Revision of Data Block TRA-Transplant Data Block

Transplant follow up Data Block required for UKT

Field ID DataType

Mand Description

TRA00 D Y Date of fileTRA01 X*1 Y Clinical assessment 1-good,2-fair,3-poor if graft functioningTRA02 D Y Date of last assessment - if knownTRA03 N*4 serum creatinine (mmol/l) format 9999TRA04 D date of serum creatinineTRA10 X*1 Y Imm sup Azathioprine Prophylaxis 1=N,2=Y,9=UKTRA20 X*1 Imm Sup Azathioprine for acute rejectTRA11 X*1 Y Imm Sup cyclosporin prophylaxisTRA21 X*1 Imm sup cyclosporin for acute rejectTRA12 C*1 Y Imm sup steroids for prophylaxisTRA22 X*1 Imm sup steroids for acute rejectTRA13 X*1 Imm sup OKT3 prophylaxisTRA23 X*1 Imm sup OKT3 for acute rejectTRA14 X*1 Imm sup ATG prophylaxisTRA24 X*1 Imm sup ATG for acute rejectTRA15 X*1 Imm sup ALG prophylaxisTRA25 X*1 Imm sup ALG for acute rejectTRA16 X*1 Imm sup tacrolimus prophylaxisTRA26 X*1 Imm sup tacrolimus for acute rejectTRA17 X*1 Imm sup Mycophenolate prophylaxisTRA27 X*1 Imm sup Mycophenolate for acute rejectTRA18 X*1 Imm sup other prophylaxisTRA19 X*1 Imm sup Sirolimus (Y /N ) *******NEW DATA

ITEMTRA28 X*1 Imm sup other for acute rejectTRA05 D Date of last imm supTRA50 S*40 Redirection address 1 (NOT USED)TRA51 S*40 Redirection address 2 (NOT USED)TRA52 S*40 Redirection town (NOT USED)TRA53 S*8 Redirection postcode (NOT USED)TRA60 X*2 Y Organ transplanted (K) - may be pancreas in future or KPTRA61 D Y Transplant dateTRA62 N*2 Y Transplant number 01,02 etc. (NOT REQUIRED)TRA63 X*1 Y Failure of transplant 1=N 2=YTRA64 D Y Date of failure if TRA63 = 2TRA65 Code Cause of failure if TRA63 = 2 UKT code TRA66 C*70 Description of failureTRA67 D Date of end of dialysis >= graft date or 0 (NOT REQUIRED)TRA68 D Date return to dialysis if graft failed >= graft date (NOT

REQUIRED)TRA69 D Date graft nephrectomy if graft failed >= graft date

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TRA99 N*2 Y Occurrence of data record in transmission Treatment Timeline items deletedTXT11 Code R Y1,2 Anatomical site of fistula/graft/shunt TXT13 Code R Y1 Dialyser usedTXT15 X*1 Y1 Dialyser reuse 2=yes 1=no

IMM block - Immuno suppression dose All doses changed to daily

Haemodialysis Session Block –QHD blockAdditional itemQHD21 Code Vascular Access Site (code list VA41)

Vascular Access Dialysis Access data blocksBlock ACL new fields added

ACL14 Nnn Serum Creatinine on date of referral for access constructionACL15 D Date of Serum Creatinine @Referral for Access(ACL14)ACL99 N Counter incremented for occurence

ACL14 should be Serum Creatinine on date closest to date of referral for Access Construction (ACL12) if date ACL10 is earlier than Date of 1st ERF Treatment (ERF00)

Block ACC new fields addedACC19 D Y Date access FIRST used for dialysisACC31 Nnn Y Serum Creatinine on date of Access ConstructionACC32 D Y Date of Serum Creatinine (ACC31)@ date of Access

Construction ACC31 is Serum Creatinine on date closest to date of Access construction

Code lists added for all Vascular access coded fields, Data blocks ACL, ACC and ACP

AMENDMENTS to Version 3.01 (1st March 2008)

Change dataset to incorporate CKD5 patients.

1. Date of CKD5, the two EGFRs that define it with datesThe program logic to detect these patients is;Prior to data extraction routine, additional software goes through database for current quarter. If patient not on RRT and CKD 5 flag not set already then;

h) Scan biochemistry eGFR timeline forward from earliest date to end of previous quarter

i) If no eGFR <15 then skip to next patientj) If egfr <15 then ‘temp store date’, scan forward up till current end quarter date

42


k) If next eGFR >15 then clear temp store date go back to scanning forward and (b)l) If next eGFR <15 then if date of eGFR > 90 days after ‘temp store date’ then set

PAT02 flag to D as CKD5. Store these 2 dates and 2 eGFRs in in PAT data block. Skip to next patient

m) If next eGFR <15 then if date of eGFR <90 days scan forwards to (e)n) If current end quarter date reached then clear temp store skip next patient

Update quarterly extraction quark to add this report cohort in the index The same CKD5 dates and eGFR fields can be resent every quarter

Field ID DataType

Mand Description

PAT02 C*1 Y Minimal Dataset Flag A = existing RRT patient B = new RRT patient, C= conservative management, D= CKD5, E= study

PAT80 D Y Date of 90 days later CKD5 eGFR (= the date of CKD5) PAT81 90 days later eGFR of CKD5 PAT82 Y Date of earlier defining eGFR of CKD5PAT83 Y Earlier defining eGFR

2. Add Karnofsky Performance Scale to Annual Co-morbidity screen (not RRT )COM70 nnn Y Karnofsky Performance Scale (0-100)

2. Once a patient has started on RRT the alter the timeline transmission quark to send any ARF HD code including the period prior to start of RRT (previously this data was not sent)

80 Acute renal failure not dialysed81 Acute haemodialysis – ARF82 Acute haemofiltration – ARF83 Acute peritoneal dialysis – ARF84 ARF recovered

AMENDMENTS to Version 2.31 (1st March 2008) as per national renal dataset testing

1. Dialysis Access data block (HD&PD) added for HCC audit (as per NRD testing spec)


TypeNRDitem

Mand Description

ACL01 D 14 Date first seen in access clinicACL02 D 15 Date put on waiting list for access surgery

ACL06 D 16 Vascular laboratory referral dateACL07 D 17 Vascular laboratory appointment dateACL10 D 37 Date of referral for access construction 1ACL11 D 38 Date scheduled access Construction/insertion 1

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ACL12 D 37 Date of referral for access construction 2ACL13 D 38 Date scheduled access Construction/insertion 2


TypeNRDitem

Mand Description

ACC10 D 37 Date of referral for access constructionACC11 D 38 Date of access Construction/insertionACC12 39 Type of Access table02ACC13 Code S 40 Anatomical Side of access table40ACC14 Code S 41 Site of access table41 (triple SNOMED code)ACC15 Code S 42 Anaesthetic methodACC18 Code S 56 Graft material / PD cath type

ACC20 D 50 Date of access failureACC21 D 51 Date of removalACC22 Code S 91 Reason for removal of access

ACC30 Code S 143 PD catheter Insertion techniqueACC99 Counter incremented for occurrence

This following table can have multiple occurrences but MUST be linked via item ACP00 to item ACC11+12 in the previous table

Field ID DataType

NRDitem

Mand Description

ACP00 D 37 Y Date of access construction (linked from ACC11+ACC12)ACP01 Code S Type of Access tabled (linked from ACC12)ACP10 D 45 Date of access Surveillance/ Complication / RevisionACP11 Code Event ; Surveillance / Complication / Revision (code S/C/R)ACP12 Code Detail of surveillance / complication revision

ACP22 Code S Microbiology resultACP32 Code S Optional anatomical location of access revision if not already

explicit ACP99 Counter incremented for occurrence

2. New HD session block to extract data from every HD session in the quarter QHD00 D Date of HD sessionQHD01 N5 Pre HD weightQHD02 N3 Pre HD systolic BPQHD03 N3 Pre HD diastolic BPQHD11 N5 Post HD weightQHD12 N3 Post HD systolic BPQHD13 N3 Post HD diastolic BPQHD19 C Symptomatic hypotension Y/ NQHD20 C Vascular access AVF/ AVG/ TLN / NLN QHD99 N2 HD block nested loop counter

3. Transplant waiting list status block (as per NRD below)Prefix Field

typeFl Description

TXP00 D Date of transplant waiting list status changeTXP01 Code Waiting list statusTXP99 Txp block nested loop counter

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For TXP block (loosely based on UKTSSA codes)Code DescriptionA1 Active on kidney listA2 Active on K-P list at this siteA3 Active on K-P list elsewhere OxfordA5 Active on urgent transplant listA6 Active with failing graft S1 Temp suspended holidayS2 Temp suspended unfitS3 Temp suspended working up fitnessT1 Transplanted cadavericT2 Transplanted Live T3 Transplanted outside EUR1 Removed unfitR2 Removed at patients requestR3 Removed working up for live transplantR9 Removed diedN1 Not listed at patients requestN2 Not listed unfitN3 Not listed working up for live transplantN9 Not listed no reasonW0 Working up for fitness

4. National Renal Dataset testing itemsPrefix Field

typeFl Description

PAT29 Code S Dominant armPAT35 D Date of renal referral (ie letter received)PAT36 Code Referral from GP / Hosp specialist (code CN / GP)PAT37 Code Referring GP code (valid if PAT36=GP, lookup national GP code table)ERF12 Code S Access used when first dialysed table02SER30 D Date HIV testSER31 C*3 HIV antigen POS / NEG / UK

5. Timeline changeText TL block QUA block

Transfer in pre-emptive transplant (see previous code 36 transfer out pre-emptive)

35 29

AMENDMENTS to Version 2.30 (1st March 2007)

Prefix Field type

Fl Description

QUA28 N*4 % Hypochromic red cells (0.1 – 20) %QUA29 N*4 Mean corpuscular haemoglobin MCH (17.1 - 39) pgQUA35 N*3 CRP 0 - 199 mg/LQUA36 N*4 LDL cholesterol (mmol/L) 0.1 - 14.9 mmol/LQUA37 N*4 HDL cholesterol (mmol/L) 0.1 – 4.9 mmol/LQUA38 N*4 Triglycerides (mmol/L) 1.0 – 39.9 mmol/L

45


QUA39 N3 Alkaline Phosphatase (20 – 699) IU/LQUA52 N3 B12 (20 – 999) ng/LQUA53 N5 Red cell folate (0.1 – 200) ug/LQUA54 N2 Transferrin saturation (1 – 70)QUA55 N3 Serum Potassium (2.0 8.9 mmol/L)QUA56 N4 Serum Urate / uric acid (0.10 – 1.19 – mmol/L)QUA57 N4 Protein : creatinine ratio (only valid transplant patients) mg/mcmolQUA58 N4 Albumin : creatinine ratio (only valid transplant patients) mg/mcmolQUA59 N4 Serum folate (0.1 – 39.9) ug/LPAT70 Code Patient Blood Group A,A2,B,O PAT71 Code Blood Group Rhesus POS= +ve NEG = -veQUA80 Code Statin drug use (valid Y/N)QUA81 Code Ace inhibitor (valid Y/N)QUA82 Code Renagel (valid Y/N)QUA83 Code Lanthanum (valid Y/N)QUA84 Code Cinacalcet (valid Y/N)QUA85 Code Calcium based binder (valid Y/N)QUA86 Code Alucaps (valid Y/N)

EPO13 Code EPO administration route iv/imEPO14 Code EPO frequency 2xw,3xw, 1w, 2w,3w,4w 5w 6w 7w 8w

SER24 D Date CMV PCR test

SER25 N5 CMV PCR copies/ml (valid 0 – 99,000)

SER26 D Date CMV antigenaemia pp65 test

SER27 CMV antigenaemia pp65 assay

New treatment timeline codes16 Assisted Cycling PD >=6 nights/wk dry17 Assisted Cycling PD >=6 nights/wk wet (day dwell)27 Transplant ; Live donor non-UK transplant56 Transfer in on: Assisted Cycling PD >=6 nights/wk dry57 Transfer in on: Assisted Cycling PD >=6 nights/wk wet (day dwell)67 Transfer in on transplant ; Live donor non-UK transplant92 Treatment stopped without recovery - conservative management93 Conservative Management - mutual decision not to offer RRT94 Clinical Decision not to offer RRT - conservative management

Please note 93 is a word change to mutual decision

Zi46w is EPO drug code for Dynepo (Erythropoietin delta)

AMENDMENTS to Version 2.27 (24th August 2005)

Field ID Data Description

46


TypeERF24 X*1 Y2 Episode of Heart failure (either right of left) 1 = N, 2 = YERF42 X*1 Y2 Angioplasty, vascular graft, aneurysm, stent (non-coronary) 1

= N 2 = Y

Zi46x is EPO drug CERAAdded opt out specification section. Summary of new variables listed below

Field ID

DataType

Mand Description

IDN05 C*1 Flag for Refused permission to send identifiable data to UKRR - “Y”

IDN06 NNNN Year of birth if IDN05 set to “Y”IDN07 C*15 Unique identifier not attributable to patient

(site code plus internal record number or some thing similar) only sent when IDN05 set to “Y” .This must be stored and accessible locally

AMENDMENTS to Version 2.26 (6th June 2004)

Field ID DataType

Description

PAT70 Code Patient Blood Group A,A2,B,O PAT71 Code Blood Group Rhesus POS= +ve NEG = -ve

KTV17 record in minutes (was hr:mm)

Timeline changeText TL block QUA block

Transfer out pre-emptive transplant 36 29Transfer to adult nephrology care 37

AMENDMENTS to Version 2.25 (18th August 2003)1. Changes / new fields

COM24 Episode of heart failure (R or L) 1= N 2 = YCOM43 Angioplasty /stent / vascular graft (non coronary) 1 = N 2 = Y

this is a word change ERF74 Date of 1st Blood pressure with 30 days prior to startERF75 1st systolic BP within 30 days prior to start RRT (valid 60 – 250)ERF76 1st diastolic BP within 30 days prior to start RRT (valid 40 – 160)

New treatment timeline codes92 Treatment stopped – conservative management

47


93 Patient Declines RRT - conservative management94 Clinical Decision Not to Offer RRT - conservative management

AMENDMENTS to Version 2.24 (1st Nov 2002)1. Acceptable validation ranges changed on :-

PAT32 weight (kg) at first visit pic 999.9 range 1.5 – 220.0PAT34 Creatinine when first seen range 20-2800ERF71 Last creatinine prior to start of ERF (valid 200 – 3300)QUA22 Ferritin (ug/l = ng/ml) 1-8000QUA24 Aluminium 0-180QUA32 Phosphate (mmol/l) 0.2 -5.5QUA41 Diastolic BP (mm Hg) 35-200QUA45 Post dialysis Diastolic BP (mm Hg) 30-200 (valid only on haemo)QUA65 Length of time on dialysis (minutes 30 - 450) valid if HD

2. PD adequacy fields defined3. Timeline modality changes :-

Text RR codeHaemodialysis > 4 days per week / daily 4Transfer in on : Haemodialysis > 4 days per week 44

Cycling PD >= 6 nights/wk dry 12Cycling PD < 6 nights /wk dry 13Cycling PD >= 6 nights/wk wet (day dwell) 14Cycling PD < 6 nights /wk wet (day dwell) 15Transfer in on : Cycling PD >= 6 nights/wk dry 52Transfer in on : Cycling PD < 6 nights /wk dry 53Transfer in on : Cycling PD >= 6 nights/wk wet (day dwell)

54

Transfer in on : Cycling PD < 6 nights /wk wet (day dwell)

55

Transplant ; non-heart-beating donor 28Transfer in on : Transplant ; non-heart-beating donor 68

Conservative Management Patient Declines RRT 93Conservative Management Clinical Decision Not to Offer RRT

94

AMENDMENTS to Version 2.23 (1st Jan 2002)1. Removed PAT26 GP name (not collected) as field was previously allocated to Health

Authority.2. Remapped PAT28, PAT29 GP address to PAT60,PAT613. Added PAT60 GP address 14. Added PAT61 GP address 25. Added PAT62 GP address 36. Added PAT63 GP address 4

48


AMENDMENTS to Version 2.22

Added field for PD adequacy data collection1. KTV20 Pre/Post Indic for wt in Kt/V calc2. KTV21 Weight in kilos3. KTV22 Dialysate Urea mmol/l4. KTV23 Urine Urea mmol/l5. KTV24 Blood Urea mmol/l6. KTV25 Dialysate Kt/V7. KTV26 Urine Kt/V8. KTV27 Dialysate Effluent Vol /litr9. KTV28 Urine Volume (litres)10. KTV29 Combined PD + Urine Kt/V11. KTV30 Urine Indicator Y/N12. KTV31 Normalised protein catabolic13. KTV32 24hr protein Loss14. KTV33 Dialysate Creatinine (umol)15. KTV34 Urine Creatinine (umol)16. KTV35 Serum Creatinine (umol) KT/V17. KTV36 Creatinine Clearance CAlc18. KTV37 Creatinine D/P (4 hrs)19. KTV38 Glucose D/DO (4 hrs)

AMENDMENTS to Version 2.211. Added QUA70 PD dialysate KT/V fmt 9.99 range2. Added QUA71

QUA70 N*4 PD dialysate KT/V fmt 9.99 range QUA71 N*4 PD urine KT/V fmt 9.99QUA72 N*4 PD nPCR fmt 9.99QUA73 PD PET creatinineQUA74 PD PET glucose

The optional GP fields have been added as the registry attempts to validate the postcode against the name + address using the NHS organisation files


1. Added section to ERF block (on 9 February 2000)PAT27 GP postcode

2. QUA07 - Hospital code in quarterly block used for RRNo extraction, same data as PAT01 but held on quarterly basis (11th May 2000 )

49


3. QUA06 - Transplant waiting list status (15th May 2000)4. Added 2 codes to treatment modality - 37 Transfer to adult nephrology

72 Graft functioning (does not need to be use after transplant, only after fail and restart


1. Added section to ERF block (on 28 October 1999)ERF 70 date last creatinine prior to start of ERFERF 71 last creatinine prior to start of ERFERF 72 date last haemoglobin prior to start of ERFERF73 date last haemoglobin prior to start of ERF

2. Added (1st Nov 1999)QUA34 Sodium (mmol/l) 90 – 170


1. Completely redefined the serology block2. Added section 5 EDTA cause of death3. Spec changed on treatment modality (typo). Transfer in codes for haemodialysis changed.

Mirrors codes 1-5. No Proton system / data in database affected as correct codes are used in Proton and sent to Registry. Only the text against the codes was wrong

40 becomes 4141 becomes 4242 becomes 4343 becomes 45

4. Added range to urea reduction ratio of 30-95


5. Added QUA44 / 45 as post dialysis blood pressures (valid if on haemo)


1. Erythropoietin drug name added (EPO11=%READ)

2. EPO dose prefix becomes EPO12 (was EPO02) and is non-mandatory.

3. Quarterly transplant status

4. Added Transplant nephrectomy 76

50


5. QUA09 quarterly primary / secondary centre flag


1. Addition of transplant live related other & transfer in on transplant live related other.

2. Transplant pancreas - RR code 79

3. Changed codes associated with transplant & transfer in4. Corrected QUA identifiers of dialysis


1. TXT17, length of time on dialysis must now be sent as minutes rather than hh:mm

2. Addition of QUA 60, 61, 63, 64, 65, 66, 67, 68 to quarterly treatment. These reflect the data sent in the timeline.

3. Addition of reasons for change of “reason for change of treatment” table. The codes have been modified to 200 + original code. Code 233 is a new code


1. PTH range increased to 300

2. Bicarbonate range increased to 49

3. Ferritin range changed to 1 - 4100 (from 5 - 2999)

4. Centre options changed. Calcium removed from Option 1 and split into option 14 (uncorrected) and 15 (Corrected calcium)

5. New Registry file naming convention :-Ryyyyqnn.RR ( R + year + quarter no. 1-4 + incremental version counter for quarter 01, 02 etc)The suffix is now fixed as RR, to follow Windows file naming conventions

6. PAT23 - postcode datatype changed to P (postcode validation software)


1. Change in length of TXT21 (Treatment supervision - Home /hosp /satl ) field to 4 characters.

51


2. Addition of QUA05 as quarterly treatment supervision (as for TXT21)

3. Addition of sign up data option catagories of 11 - QEPO, 12 - QHBA1, 13 - QBCAR


1. Addition of PAT17 identifier field for EDTA patient number.


1. field Treatment time line table - removed TXT02 as duplicate treatment centre as already specified in TXT20. TXT03-5 => TXT02-4.

2. Additional note on EDTA Code categories for ‘Cause of Death’ and ‘Diagnostic’ code categories

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renal registry data set version 3.nn · web viewrenal registry data set ... the registry has...

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