Kidney Biopsy Codes for Pathologists

KBC

KBC

Codes?

Code Concept Coding system68779003 Primary IgA nephropathy SNOMED CTS67300 IgA nephropathy SNOMED II1128 IgA nephropathy ERA-EDTA PRD

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KBC

What exactly do we want to achieve?

We want to develop a terminology with corresponding codes (or “code values”) applicable to every non-neoplastic kidney biopsy for use by nephropathologists, nephropathology units or kidney biopsy registries.

3

KBC 4

As-is

Principles

Design

Review

Governance

• Describe coding systems: Kidney biopsy registries and nephropathology centres• Describe international terminologies

• Define the requirements the KBC has to fullfill• Build the principles for the solution

• Technical description of the basic design and a rational for choosing a specific system• A complete code list and an example how to map an existing diagnosis list to the new codes

• Organize and conduct a review process• Implement suggestions for improvement and comments

• Build structures for maintenance and further development; provide a economical model• Online publication of the KBC

KBC

How do we intend to reach our goal?

5

Amélie DendoovenAntwerp, BelgiumFCGG

Sabine LehBergen, NorwayNNR

Flemish Collaborative Glomerulonephritis Group Norsk Nyreregister, seksjon for nyrebiopsi

Kidney Biopsy Codes

KBC

KBC

How do we intend to reach our goal?

6

Mark HelbertAntwerp, Belgium

KBC 7

Steering groupand project owner

Central project team

Kerstin AmannRonald CornetLoreto GesualdoHelmut Hopfer

Amélie DendoovenMark HelbertSabine Leh

Helmut HopferBaselSwitzerland

Kerstin AmannErlangenGermany

Ronald CornetAmsterdamNetherlands

Loreto GesualdoBariItaly

KBC 8

Steering groupand project owner

Project team

Team WP1

Team WP2

Team WP3

Team WP4

Advisory group

Team WP5

Central project team

Stakeholder reference group

Ingeborg BajemaAn De VrieseSanjeev SethiMark Haas Ian RobertsWim LaurensCharles ThomsonCharles Jennette

Thorsten WiechHan PeetermansJan BeckerJoris RoelofsTri NguyenCandice A RoufosseChristine WeynBen SprangersHeinz RegeleJohan De MeesterMarion RabantCarine Peutz-KootstraEvelyne LerutMyrurgia Abdul Hamid M.A.Agnieszka PerkowskaMaria Soares

KBC 9

As-is

Principles

Design

Review

Governance

• Describe coding systems: Kidney biopsy registries and nephropathology centres• Describe international terminologies

• Define the requirements the KBC has to fullfill• Build the principles for the solution

• Technical description of the basic design and a rational for choosing a specific system• A complete code list and an example how to map an existing diagnosis list to the new codes

• Organize and conduct a review process• Implement suggestions for improvement and comments

• Build structures for maintenance and further development; provide a economical model• Online publication of the KBS

KBC

What have we accomplished so far?

10

KBC

Scope WP1: to learn what is

To describe• medical kidney biopsy registries• their coding systems• international terminologies

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Sources:Scientific papers - PubMed search: ((Renal biopsy[Title/Abstract]) OR kidney biopsy[Title/Abstract]) AND registry[Title/Abstract]

Websites, Surveymonkey

KBC

Norway

PolandDenmark

BelgiumCzech Republic

Romania

Scotland

Spain

Italy

British ColumbiaJapan

Limburg

Malaysia

Uruguay

Sweden

KBC

How do registries code?

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2 Coverage 3 Duration 7 Satisfaction Country

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ERA

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ICD

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SNO

MED

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SNO

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Adm

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British Columbia Glomerulonephritis Registry regional 5-10 x x 4 CanadaFlemish Renal Biopsy Registry regional <5 x x 4 FlandersNorwegian Renal Registry nationwide >20 x x x x 3 NorwayNational Pathology Data Bank nationwide 11-20 x x x 2 DenmarkSouth-Eastern Romanian Renal Biopsy Registry single center >20 x x x 3 RomaniaCzech Registry of Renal Biopsies nationwide >20 x x x 4 CzechiaJapanes Renal Biopsy Registry nationwide 11-20 x 3 JapanItalian Registry of Renal Biopsies nationwide >20 x x x x 3 ItalyPolish Registry of Renal Biopsies nationwide 5-10 x x PolandSpanish Registry of Glomerulonephritis nationwide >20 x x 4 SpainScottish Renal Biopsy Registry regional 11-20 x x x 4 Scotland

4+5: coding systems and mapping 6 Who codes

KBC

How do registries code?

15

IgA nephropathy, mesangioproliferative GN

glomerulonephritis. 15 glomeruli, 1 cellular

crescent, 2 segmental sclerosis, 4 global

glomerulosclerosis. Tubular atrophy in

around 20% of the cortical area. Moderate

arteriolosclerosis and arteriosclerosis. IH:

Dominant IgA positivity EM: Mesangial

electron dense deposits

Oxford classification: M1 E0 S1 T0 C1

FCGG-NBVN 3/3a IgA nephropathy / IgA nephropathy, primary

ERA-EDTA PRD 1128 IgA nephropathy –histologically proven

FLEMISH COLLABORATIVE GLOMERULONEPHRITIS GROUP (FCGG-NBVN)

ERA-EDTA PRD 1128 IgA nephropathy-histologically proven

NNR 2013 300 IgA nefropati

NNR 2011 3 IgA nefropati

NORWEGIAN RENAL REGISTRY (NNR)

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

ITALIAN REGISTRY OF RENAL BIOPSIES (IRRB)

PATOBANK (DENMARK)

T 71000 kidney

M46862 diffuse mesangial proliferative GN

S67300 IgA nephritis

M53300 glomerulosclerosis

M58000 tubular atrophy

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

SCOTTISH RENAL BIOPSY REGISRTY

1730 IgA nephropathy with crescents

CZECH REGISTRY OF RENAL BIOPSIES (CRRB)

G23.1 IgA nephropathy primary

V3 Hypertensive/benign/ischemic nephrosclerosis

BRITISH COLUMBIA GLOMERULONEPHRITIS NETWORK

? IgA nephropathy

SPANISH REGISTRY OF GLOMERULONEPHRITIS

124 Class IV (diffuse proliferative) lesions in

IgA nephropathy

POLISH REGISTRY OF RENAL BIOPSIES (PRRB)

IgA nephropathy (histological diagnosis by pathogenesis)

Mesangial proliferative glomerulonephritis (histological diagnosis by histopathology)

JAPAN RENAL BIOPSY REGISTRY (J-RBR)

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

UK RENAL REGISRTY

Mesangioproliferative glomerulonephritisIgA nephropathyInterstitial fibrosisArteriosclerosis

LIMBURG RENAL REGISRTY

IgA nephropathy

ROMANIA "Dr. Carol Davila"

KBC

How do registries code?

16

IgA nephropathy, mesangioproliferative GN

glomerulonephritis. 15 glomeruli, 1 cellular

crescent, 2 segmental sclerosis, 4 global

glomerulosclerosis. Tubular atrophy in

around 20% of the cortical area. Moderate

arteriolosclerosis and arteriosclerosis. IH:

Dominant IgA positivity EM: Mesangial

electron dense deposits

Oxford classification: M1 E0 S1 T0 C1

FCGG-NBVN 3/3a IgA nephropathy / IgA nephropathy, primary

ERA-EDTA PRD 1128 IgA nephropathy –histologically proven

FLEMISH COLLABORATIVE GLOMERULONEPHRITIS GROUP (FCGG-NBVN)

ERA-EDTA PRD 1128 IgA nephropathy-histologically proven

NNR 2013 300 IgA nefropati

NNR 2011 3 IgA nefropati

NORWEGIAN RENAL REGISTRY (NNR)

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

ITALIAN REGISTRY OF RENAL BIOPSIES (IRRB)

PATOBANK (DENMARK)

T 71000 kidney

M46862 diffuse mesangial proliferative GN

S67300 IgA nephritis

M53300 glomerulosclerosis

M58000 tubular atrophy

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

SCOTTISH RENAL BIOPSY REGISRTY

1730 IgA nephropathy with crescents

CZECH REGISTRY OF RENAL BIOPSIES (CRRB)

G23.1 IgA nephropathy primary

V3 Hypertensive/benign/ischemic nephrosclerosis

BRITISH COLUMBIA GLOMERULONEPHRITIS NETWORK

? IgA nephropathy

SPANISH REGISTRY OF GLOMERULONEPHRITIS

124 Class IV (diffuse proliferative) lesions in

IgA nephropathy

POLISH REGISTRY OF RENAL BIOPSIES (PRRB)

IgA nephropathy (histological diagnosis by pathogenesis)

Mesangial proliferative glomerulonephritis (histological diagnosis by histopathology)

JAPAN RENAL BIOPSY REGISTRY (J-RBR)

ERA-EDTA PRD 1128 IgA nephropathy – histologically proven

UK RENAL REGISRTY

Mesangioproliferative glomerulonephritisIgA nephropathyInterstitial fibrosisArteriosclerosis

LIMBURG RENAL REGISRTY

IgA nephropathy

ROMANIA "Dr. Carol Davila"

KBC

Japan Renal Biopsy Registry

18Sugiyama H, Yokoyama H, Sato H, et al. Japan Renal Biopsy Registry: the first nationwide, web-based, and prospective registry system of renal biopsies in Japan. Clin Exp Nephrol 2011; 15(4): 493-503.

KBC

Japan Renal Biopsy Registry

19Sugiyama H, Yokoyama H, Sato H, et al. Japan Renal Biopsy Registry: the first nationwide, web-based, and prospective registry system of renal biopsies in Japan. Clin Exp Nephrol 2011; 15(4): 493-503.

KBC

WP2: Principles

• Principles are fundamental rules (foundation) on which KBC is based.

• The principles are designed to ensure that the system meets the needs of the various interested parties.

20

KBC

Workshop WP 2 principles Maastricht 21.06.2018

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Participants:First row (left to right): Tri Nguyen (Netherlands), Evelyne Lerut (Belgium)Second row: Han Peetermans (Belgium), Thorsten Wiech (Germany), Candice Roufousse (UK), Myrurgia Abdul Hamid M.A. (Netherlands), Amélie Dendooven (Belgium), Joris Roelofs (Netherlands), Sabine Leh (Norway)

KBC

Coding of more than onemorphological pattern

Coding along several axes

Flexibility according to the user’sneeds

Simple and quick to use

Various operation modalities

State of the art knowledge

Mapping to self-made codingsystems possible

Mapped to widely used terminologies

Freely accessible

Codes for every conceivablescenario

Unambiguous coding

Synonyms

Definitions

KBC is multilingual

Coding roules are provided

GovernanceCoding of multiple diagnoses

Hierarchy of coding axes

Minimised workload to run thesystem

Coding System Environment

KBC

Coding of more than onemorphological pattern

Coding along several axes

Flexibility according to the user’sneeds

Simple and quick to use

Various operation modalities

State of the art knowledge

Mapping to self-made codingsystems possible

Mapped to widely used terminologies

Freely accessible

Codes for every conceivablescenario

Unambiguous coding

Synonyms

Definitions

KBC is multilingual

Coding roules are provided

GovernanceCoding of multiple diagnoses

Hierarchy of coding axes

Minimised workload to run thesystem

Coding System Environment

KBC

Principles

1. Coding of more than one morphological pattern is possible

2. KBC allows coding along several axes

3. Coding multiple diagnoses is possible with KBC

4. KBC provides for unambiguous coding

5. Governance is established

6. KBC reflects state-of-the-art knowledge

7. KBC is simple and quick to use

8. KBC is freely accessible

9. Use of KBC is flexible according to the user´s needs

10. Mapping of KBC to existing coding systems is possible

11. KBC provides synonyms for concepts

12. The workload in production, maintenance and governance is minimised

13. KBC allows for various operating modalities such as coding on paper, but also coding in digital systems and databases

KBC

Principles

1. Coding of more than one morphological pattern is possible

2. KBC allows coding along several axes

3. Coding multiple diagnoses is possible with KBC

4. KBC provides for unambiguous coding

5. Governance is established

6. KBC reflects state-of-the-art knowledge

7. KBC is simple and quick to use

8. KBC is freely accessible

9. Use of KBC is flexible according to the user´s needs

10. Mapping of KBC to existing coding systems is possible

11. KBC provides synonyms for concepts

12. The workload in production, maintenance and governance is minimised

13. KBC allows for various operating modalities such as coding on paper, but also coding in digital systems and databases

KBC

What comes next?

Design and content!

26

KBC

KBC

Kidney biopsy diagnosis

28

KBC

Kidney biopsy diagnosis

29

Diagnosis code

Pathogenesis code

Pattern code

Certainty code

KBC

Kidney biopsy diagnosis

30

Diagnosis code

Pathogenesis code

Pattern code

Certainty code

Combined code

KBC

Discussion

• How to align efforts?

32

KBC 33

As-is

Principles

Design

Review

Governance

• Describe coding systems: Kidney biopsy registries and nephropathology centres• Describe international terminologies

• Define the requirements the KBC has to fullfill• Build the principles for the solution

• Technical description of the basic design and a rational for choosing a specific system• A complete code list and an example how to map an existing diagnosis list to the new codes

• Organize and conduct a review process• Implement suggestions for improvement and comments

• Build structures for maintenance and further development; provide a economical model• Online publication of the KBS

KBC

Acknowledgements

National Pathology Data BankItalian Registry of Renal BiopsiesScottish Renal Biopsy RegistrySpanish Registry of GlomerulonephritisThe Polish Registry of Renal BiopsiesBritish Columbia Glomerulonephritis RegistryUK Renal RegistryLimburg Renal RegistryJapan Renal Biopsy RegistryCzech Renal Biopsy RegistrySouth-Eastern Romanian Renal Biopsy RegistrySwedish Renal registryNederlandstalige Belgische Vereniging voorNefrologie (NBVN)

Niels MarcussenLoreto GesualdoColin GeddesJuan Manuel Lopez GomezAgniezka PerkowskaSean BarbourFergus CaskeyMyurgia Abdul HamidMichio NagataEva JancovaCristina CapusaMarten Segelmark

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amelie.dendooven@uantwerpen.besabine.leh@helse-bergen.no