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Coding practice in national and regional kidney biopsy registries.

Dendooven, Amélie
; 
Peetermans, Han
; 
Helbert, Mark
; 
Nguyen, Tri Q
; 
Marcussen, Niels
; 
Nagata, Michio
; 
Gesualdo, Loreto
; 
Perkowska-Ptasinska, Agnieszka
; 
Capusa, Cristina
; 
López-Gómez, Juan M
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Author
Dendooven, Amélie
 Peetermans, Han
 Helbert, Mark
 Nguyen, Tri Q
 Marcussen, Niels
 Nagata, Michio
 Gesualdo, Loreto
 Perkowska-Ptasinska, Agnieszka
 Capusa, Cristina
 López-Gómez, Juan M
 Geddes, Colin
 Abdul-Hamid, Myrurgia A
 Segelmark, Mårten
 Yahya, Rosnawati
 Garau, Mariela
 Villanueva, Russell
 Dorman, Anthony
 Barbour, Sean
 Cornet, Ronald
 Hopfer, Helmut
 Amann, Kerstin
 Leh, Sabine
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Date
2021-05-24
Date Submitted
Keywords
Coding
Kidney biopsy registry
Nephropathology
Renal pathology
systematic review
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s12882-021-02365-3.pdf
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https://hdl.handle.net/10147/631457
Abstract
Background: Kidney biopsy registries all over the world benefit research, teaching and health policy. Comparison, aggregation and exchange of data is however greatly dependent on how registration and coding of kidney biopsy diagnoses are performed. This paper gives an overview over kidney biopsy registries, explores how these registries code kidney disease and identifies needs for improvement of coding practice. Methods: A literature search was undertaken to identify biopsy registries for medical kidney diseases. These data were supplemented with information from personal contacts and from registry websites. A questionnaire was sent to all identified registries, investigating age of registries, scope, method of coding, possible mapping to international terminologies as well as self-reported problems and suggestions for improvement. Results: Sixteen regional or national kidney biopsy registries were identified, of which 11 were older than 10 years. Most registries were located either in Europe (10/16) or in Asia (4/16). Registries most often use a proprietary coding system (12/16). Only a few of these coding systems were mapped to SNOMED CT (1), older SNOMED versions (2) or ERA-EDTA PRD (3). Lack of maintenance and updates of the coding system was the most commonly reported problem. Conclusions: There were large gaps in the global coverage of kidney biopsy registries. Limited use of international coding systems among existing registries hampers interoperability and exchange of data. The study underlines that the use of a common and uniform coding system is necessary to fully realize the potential of kidney biopsy registries.
Language
en
Citation
ISSN
eISSN
1471-2369
ISBN
DOI
10.1186/s12882-021-02365-3
PMID
34030637
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