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Page 1: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

PRD_codes_KS_03102012.ppx

Page 2: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs

and how we can use them in Rare Disease Groups

Keith SimpsonUKRR [email protected]

Page 3: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson
Page 4: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Survival of all RRT patients by PRDScottish renal units

Page 5: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

a.

Page 6: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

To improve and standardise the coding and definitions used by renal registries in Europe.

Aim

.

Page 7: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

What do Drs Do?

Service to patientsdiagnosisprognosistreatment

Managing the serviceResearch and quality improvementTeaching & learning

Comparable data required

.

Page 8: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Usable by ordinary clinicians for routine work Acknowledge the uncertainties in clinical practice Incorporate the existing ERA-EDTA Codes & definitions PRD, CoDProvide working definitions Consistent with emerging medical standards SNOMED CTRigorous enough to support primary and epidemiology researchCompatible with other international registriesCapable of electronic transmission

Acceptable to the ERA-EDTA registry and affiliated registries

Some principles

.

Page 9: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

PRD Headings

.

ERA-EDTA PRDERA-EDTA Primary Renal Diagnosis (PRD) terms

HistologyClinical historyFamily historyClinical ExamBiochemistryImmunologyUrine analysisImagingGene testOther criteria & notes

SNOMED CT concept identifier for focus conceptSNOMED CT fully specified nameSNOMED CT expression constraintMapping to old PRD codeMapping to old PRD termOnline Mendelian Inheritance in Man - linkICD10 codeICD10 rubric

Page 10: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

ERA-EDTA Primary Renal Diagnosis

.

Page 11: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

.

Page 12: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

The diagnosisThe term we use= the ‘PRD’

The evidence<> a definition (yet)

Notes Because we don’t have a definition

.

Page 13: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

The diagnosisThe term we use= the ‘PRD’

The evidence<> a definition (yet)

Notes Because we don’t have a definition

.

Page 14: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

PRD SNOMED id Concept mapping of the meaning

.

Page 15: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

PRD SNOMED id Concept mapping of the meaning

.

Page 16: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Why map to SNOMED?

.

Page 17: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

SNOMED CT Provides

Extensive and well supported list of terms currentlanguage translation, literature links eg BMJ, Map of Medicinedecision support, queries using multiple domain hierarchies,

secondary functions eg research, hospital management

Page 18: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

SNOMED CT Provides

Extensive and well supported list of terms currentlanguage translation, literature links eg BMJ, Map of Medicinedecision support, queries using multiple domain hierarchies,

secondary functions eg research, hospital management

Will soon be the only terminology supported by the NHS in the UK

Page 19: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson
Page 20: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

ICD 10 Hierarchy

A bacterial infections B other infections C malignancies D benign neoplasmsE endocrineG CNS

…N renal

Page 21: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

ICD 10 Hierarchy

A bacterial infections incl meningiococcal meningitisB other infections incl H. influenzaC malignancies and sarcoidD benign neoplasmsE endocrineG CNS incl H. influenzae meningitis and Systemic atrophy of CNS in myxoedema…N renal

Page 22: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

N040 Nephrotic syndrome, minor glomerular abnormalityN041 Nephrotic syndrome, focal and segmental glomerular lesionsN042 Nephrotic syndrome, diffuse membranous glomerulonephritisN043 Diffuse mesangial proliferative glomerulonephritisN044 Diffuse endocapillary proliferative glomerulonephritisN045 Diffuse mesangiocapillary glomerulonephritisN046 Nephrotic syndrome, dense deposit diseaseN047 Nepthrotic syndrome, diffuse crescentic glomerulonephritisN048 Nephrotic syndrome, otherN049 Nepthrotic syndrome, unspecified

ICD 10 Nephrotic

Page 23: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

ICD 10 NephroticN04

N040 Nephrotic syndrome, minor glomerular abnormalityN041 Nephrotic syndrome, focal and segmental glomerular lesionsN042 Nephrotic syndrome, diffuse membranous glomerulonephritisN043 Diffuse mesangial proliferative glomerulonephritisN044 Diffuse endocapillary proliferative glomerulonephritisN045 Diffuse mesangiocapillary glomerulonephritisN046 Nephrotic syndrome, dense deposit diseaseN047 Nepthrotic syndrome, diffuse crescentic glomerulonephritisN048 Nephrotic syndrome, otherN049 Nepthrotic syndrome, unspecified

Page 24: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

A985 Haemorrhagic fever with renal syndromeC65X Malignant neoplasm of renal pelvisD301 Benign neoplasm of renal pelvisE112 Non-insulin-dependent diabetes mellitus with renal compsI120 Hypertensive renal disease with renal failureK767 Hepatorenal syndromeM8312/3 Renal cell carcinoma (C64)N170 Acute renal failure with tubular necrosisO904 Postpartum acute renal failureP960 Congenital renal failureQ600 Renal agenesis, unilateralR392 Extrarenal uraemiaS354 Injury of renal blood vesselsZ992 Dependence on renal dialysis

ICD10 Terms including ‘renal’one example per letter

Page 25: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

N200 Calculus of kidneyN140 Analgesic nephropathyP960 Congenital renal failure

ICD10 which language ?

Page 26: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

N119 Chronic tubulo-interstitial nephritis, unspecifiedN159 Renal tubulo-interstitial disease, unspecified

ICD10 which language ?

Page 27: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

ICD10

No semantic links

Page 28: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

SNOMED CT

Page 29: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Some of the descriptions associated with ConceptID 22298006:

• Fully Specified Name: Myocardial infarction (disorder)DescriptionID 751689013

• Preferred term: Myocardial infarctionDescriptionID 37436014

• Synonym: Cardiac infarctionDescriptionID 37442013

• Synonym: Heart attackDescriptionID 37443015

• Synonym: Infarction of heartDescriptionID 37441018

One concept, many names

Includes foreign language and local terms

.

Page 30: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Conveys meaning not just a labelrelationships and attributes like:Is a kidney diseaseIs a …

.

Page 31: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

.

Page 32: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

UK Renal SNOMED CT subset

.

Includes:most of the existing renal terms – about 1100and the new ERA EDTA PRDs

Managed by:UK Renal Terminology Committee (RIXG & RA)working with the NHS Terminology Centre

Purpose:Patient records, Registries, RADAR, RDGs, research, TheProject

Page 33: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Rare Disease GroupDiagnoses

.

Decide what you needCheck that they are in SNOMED CTLet me know

If you can’t find what you need fill in a questionnaire (on RA Web or Sue Shaw UKRR)for each diagnosis required in as much detail as you can and send tothe UK renal terminology committee (via the Chair Dr Afzal Chaudhry or me).

New terms, codes will then be generated by the NHS Terminology Centre, returned to us and added to the drop down pick lists for your RDG sent to IHTSDO in Copenhagen for inclusion in the SNOMED CT International Release

If you need help, ask Afzal or meyou have to provide the medical knowledge & intellectual input

Page 34: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

Summary

New ERA EDTA PRD terms & codes mapped to SNOMED CT, ICD10 and old EDTA PRD codes

Benefits of SNOMED CT

butgeneration of new codes requires input from: disease experts (you) terminologists (at NHS TC)

Page 35: PRD_codes_KS_03102012.ppx. UK Renal SNOMED CT subset incorporating the new ERA-EDTA PRDs and how we can use them in Rare Disease Groups Keith Simpson

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