Information gathered in kidney biopsy registries benefits research, teaching and policy-making. Nowadays registries are mainly using locally developed classifications (sometimes with corresponding codes) for registration of pathology diagnoses. Because of the variety in classifications and codes, comparison, exchange or accumulation of data is hampered. Consequently, there is a great need for a more standardized, universally applicable terminology and interoperable coding for kidney biopsy codes.
The KBC project is a scientific collaborative project aiming to provide a complete and structured list of terminology and codes applicable to kidney biopsies. The most important advantage of a common system for pathology codes is interoperability between biopsy registries and laboratory information systems. Nephropathologists, nephropathology units and kidney biopsy registries will benefit from this.
The principles underlying the coding system (KBC) are being developed during the project. For example, the complexity: How detailed should the coding be regarding subdiagnoses? What is the relation and structure (aggregation) between the different codes? Should the KBC include histologic patterns or measures of chronicity or only diagnoses in strict sense? Should the system be applicable to any renal diagnosis (including clinical diagnoses) or should it be limited to histology-proven diagnoses? Should it be mapped to international medical terminology systems and how should this be done?
The KBC project aims to develop codes for non-neoplastic kidney biopsies, but does not aim to provide a complete outline for structured reporting of kidney biopsies. This might be a goal for future projects. Neither does the KBC project itself lead to a shared or unified kidney biopsy database in Europe or the world.
Providing detailed codes for tumoral (neoplastic) pathology is not in the scope of the project.
The project aims to publish the KBC in the scientific literature and online.
Each working group (WG) works on a work package (WP).
The KBC consists of the following work packages:
WP1: As-is: registries and coding systems
WP3: Design and content
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