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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
2
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
11
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?
14
2 Coverage 3 Duration 7 Satisfaction Country
Free
text
Selfm
ade
ERA
-ED
TA P
RD
ICD
-10
SNO
MED
CT
SNO
MED
Nep
hrol
ogis
t
Path
olog
ist
Adm
inis
trat
or/s
tudy
nur
se
IT p
erso
n/co
ding
exp
ert
Oth
er
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
21
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
34
[email protected]@helse-bergen.no