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.
| Originalsprog | Engelsk |
|---|---|
| Artikelnummer | 193 |
| Tidsskrift | BMC Nephrology |
| Vol/bind | 22 |
| Udgave nummer | 1 |
| Antal sider | 10 |
| ISSN | 1471-2369 |
| DOI | |
| Status | Udgivet - dec. 2021 |
Bibliografisk note
Funding Information:The authors would like to thank the Flemish Collaborative Glomerulonephritis Group Registry and the Norwegian Renal Registry for supporting this study. The authors thank Eva Jancova, Fergus Caskey and Matija Crnogorac for providing information about their kidney biopsy registry and coding practice. The authors also acknowledge the international scientific organizations ERA-EDTA (European Renal Association-European Dialysis and Transplant Association), and ISN (International Society of Nephrology) for endorsement. A special thanks to the ESP (European Society of Pathology) Nephropathology working group for support and helpful discussions right from the start of this project. Last but not least we are very grateful to the RPS (Renal Pathology Society) not only for endorsement, but also for providing a stakeholder forum in the form of the Harmonized Coding Group in the Scientific Committee of RPS.
Publisher Copyright:
© 2021, The Author(s).
Finansiering
The authors would like to thank the Flemish Collaborative Glomerulonephritis Group Registry and the Norwegian Renal Registry for supporting this study. The authors thank Eva Jancova, Fergus Caskey and Matija Crnogorac for providing information about their kidney biopsy registry and coding practice. The authors also acknowledge the international scientific organizations ERA-EDTA (European Renal Association-European Dialysis and Transplant Association), and ISN (International Society of Nephrology) for endorsement. A special thanks to the ESP (European Society of Pathology) Nephropathology working group for support and helpful discussions right from the start of this project. Last but not least we are very grateful to the RPS (Renal Pathology Society) not only for endorsement, but also for providing a stakeholder forum in the form of the Harmonized Coding Group in the Scientific Committee of RPS.
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