Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 May 24;22(1):193.
doi: 10.1186/s12882-021-02365-3.

Coding practice in national and regional kidney biopsy registries

Amélie Dendooven  1   2 , Han Peetermans  3 , Mark Helbert  3 , Tri Q Nguyen  4 , Niels Marcussen  5 , Michio Nagata  6 , Loreto Gesualdo  7 , Agnieszka Perkowska-Ptasinska  8 , Cristina Capusa  9 , Juan M López-Gómez  10 , Colin Geddes  11 , Myrurgia A Abdul-Hamid  12 , Mårten Segelmark  13 , Rosnawati Yahya  14 , Mariela Garau  15 , Russell Villanueva  16 , Anthony Dorman  17 , Sean Barbour  18 , Ronald Cornet  19 , Helmut Hopfer  20 , Kerstin Amann  21 , Sabine Leh  22 ; Kidney Biopsy Codes for Pathologists project (www.kibico.org)
Affiliations

Coding practice in national and regional kidney biopsy registries

Amélie Dendooven et al. BMC Nephrol. .

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.

Keywords: Coding; Kidney biopsy registry; Nephropathology; Renal pathology; Systematic review.

PubMed Disclaimer

Conflict of interest statement

None of the coauthors declares a competing interest related to this article.

Figures

Fig. 1
Fig. 1
Graphical representation of the search strategy to identify medical literature about kidney biopsy registries
Fig. 2
Fig. 2
Geographical distribution of kidney biopsy registries around the globe (the basis map was reused from publicdomainvectors.org)
See this image and copyright information in PMC

References

    1. Radhakrishnan J, Cattran DC. The KDIGO practice guideline on glomerulonephritis: reading between the (guide)lines--application to the individual patient. Kidney Int. 2012;82(8):840–856. doi: 10.1038/ki.2012.280. - DOI - PubMed
    1. Srivastava A, Palsson R, Kaze AD, Chen ME, Palacios P, Sabbisetti V, et al. The prognostic value of histopathologic lesions in native kidney biopsy specimens: results from the Boston kidney biopsy cohort study. J Am Soc Nephrol. 2018;29(8):2213–24. 10.1681/ASN.2017121260. - PMC - PubMed
    1. Leaf DE, Appel GB, Radhakrishnan J. Glomerular disease: why is there a dearth of high quality clinical trials? Kidney Int. 2010;78(4):337–342. doi: 10.1038/ki.2010.156. - DOI - PubMed
    1. Sethi S, D'Agati VD, Nast CC, Fogo AB, De Vriese AS, Markowitz GS, et al. A proposal for standardized grading of chronic changes in native kidney biopsy specimens. Kidney Int. 2017;91(4):787–789. doi: 10.1016/j.kint.2017.01.002. - DOI - PubMed
    1. Arts DG, De Keizer NF, Scheffer GJ. Defining and improving data quality in medical registries: a literature review, case study, and generic framework. J Am Med Inform Assoc. 2002;9(6):600–611. doi: 10.1197/jamia.M1087. - DOI - PMC - PubMed