Coding practice in national and regional kidney biopsy registries

Forskningsoutput: TidskriftsbidragArtikel i vetenskaplig tidskrift


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.


  • 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
  • Anthony Dorman
  • Sean Barbour
  • Ronald Cornet
  • Helmut Hopfer
  • Kerstin Amann
  • Sabine Leh
  • Kidney Biopsy Codes for Pathologists project
Enheter & grupper
Externa organisationer
  • Ghent University Hospital
  • University of Antwerp
  • University Medical Center Utrecht
  • Odense University Hospital
  • University of Bari Aldo Moro
  • Medical University of Warsaw
  • Carol Davila University of Medicine and Pharmacy
  • Hospital Gregorio Maranon
  • Kuala Lumpur Hospital
  • University of the Republic
  • National Kidney and Transplant Institute Philippines
  • Beaumont Hospital, Dublin
  • University of British Columbia
  • Academic Medical Center
  • University Hospital Basel
  • University Hospital Erlangen
  • Haukeland University Hospital
  • ZNA Middelheim Hospital
  • University of Tsukuba Hospital
  • Glasgow Renal and Transplant Unit
  • Maastricht University Medical Centre

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Urologi och njurmedicin


TidskriftBMC Nephrology
Utgåva nummer1
StatusPublished - 2021 dec 1
Peer review utfördJa