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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 and López-Gómez, Juan M. , et al. (2021) In BMC Nephrology 22(1).
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... (More)

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.

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publication status
published
subject
keywords
Coding, Kidney biopsy registry, Nephropathology, Renal pathology, Systematic review
in
BMC Nephrology
volume
22
issue
1
article number
193
publisher
BioMed Central (BMC)
external identifiers
  • scopus:85106871964
  • pmid:34030637
ISSN
1471-2369
DOI
10.1186/s12882-021-02365-3
language
English
LU publication?
yes
id
0049ea4e-3ee4-40a0-b58e-155426716759
date added to LUP
2021-06-14 15:19:33
date last changed
2024-06-15 12:30:56
@article{0049ea4e-3ee4-40a0-b58e-155426716759,
  abstract     = {{<p>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.</p>}},
  author       = {{Dendooven, Amélie and Peetermans, Han and Helbert, Mark and Nguyen, Tri Q. and Marcussen, Niels and Nagata, Michio and Gesualdo, Loreto and Perkowska-Ptasinska, Agnieszka and Capusa, Cristina and López-Gómez, Juan M. and Geddes, Colin and Abdul-Hamid, Myrurgia A. and Segelmark, Mårten and Yahya, Rosnawati and Garau, Mariela and Villanueva, Russell and Dorman, Anthony and Barbour, Sean and Cornet, Ronald and Hopfer, Helmut and Amann, Kerstin and Leh, Sabine}},
  issn         = {{1471-2369}},
  keywords     = {{Coding; Kidney biopsy registry; Nephropathology; Renal pathology; Systematic review}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Nephrology}},
  title        = {{Coding practice in national and regional kidney biopsy registries}},
  url          = {{http://dx.doi.org/10.1186/s12882-021-02365-3}},
  doi          = {{10.1186/s12882-021-02365-3}},
  volume       = {{22}},
  year         = {{2021}},
}