Royal College of Surgeons in Ireland
Coding practice in national and regional kidney biopsy registries.pdf (769.48 kB)

Coding practice in national and regional kidney biopsy registries

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journal contribution
posted on 2022-11-30, 16:59 authored by Amélie Dendooven, Han Peetermans, Mark Helbert, Tri Q Nguyen, Niels Marcussen, Michio Nagata, Loreto Gesualdo, Agnieszka Perkowska-Ptasinska, Cristina Capusa, Juan M López-Gómez, Colin Geddes, Myrurgia A Abdul-Hamid, Mårten Segelmark, Rosnawati Yahya, Mariela Garau, Russell Villanueva, Tony DormanTony Dorman, Sean Barbour, Ronald Cornet, Helmut Hopfer, Kerstin Amann, Sabine Leh, Kidney Biopsy Codes for Pathologists project (

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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Published Citation

Dendooven A. et al. Coding practice in national and regional kidney biopsy registries. BMC Nephrol. 2021;22(1):193.

Publication Date

24 May 2021

PubMed ID



  • Beaumont Hospital
  • Pathology


BioMed Central


  • Published Version (Version of Record)