Use case 8: Coding kidney biopsy for setting up a regional kidney biopsy in South-East Romania

In Romania, kidney biopsies (KB) for non-neoplastic diseases are performed in a few nephrology centers, namely four university-affiliated hospitals which work as specialized, tertiary-care referral centers, regionally distributed in the country. A national KB registry does not exist and different practice are used in these centers (one example is the lack of universal performance of electron microscopy in some of the centers, and consequently of the unitary terminology in pathological reports). A tentative to start a regional KB registry is underway in Bucharest, at the “Dr. Carol Davila” Teaching Hospital of Nephrology (in cooperation with the Nephrology Department of the Fundeni Clinical Institute), referral centers which together provides Nephrology care for the South-East part of the country (17 counties with an estimate coverage of 42% of Romanian population), and represent one of the four KB centers in the country. All the three interpretation methods (light microscopy, immunofluorescence, electron microscopy) are routinely used here for the nephropathological diagnosis. The results are reported descriptively for each of the three methods and a pattern of injury is diagnosed by the nephropathologist in the final part or each KB report, sometimes with proposed clinicopathological comments. All the reports are stored electronically in an information system. Codes are currently not used. Of note, a national registry for chronic kidney disease patients undergoing dialysis is functional in Romania for more than 25 years (Romanian Renal Registry – operated under the Health Ministry regulation and located at the “Dr. Carol Davila” Teaching Hospital of Nephrology). This nation-wide registry uses for the patients’ diagnosis the Primary Renal Disease codes of the European Renal Association and reports annually its data to ERA. Adoption of a coding system for KB reports (KBC system) would be very helpful on several levels in our case: a) to facilitate the computer storage of data, b) to standardize the reporting of nephropathological results in the four kidney biopsy centers in Romania, c) for future interoperability with the Romanian Renal Registry, and d) to facilitate scientific research cooperation between the centers in our country and, at the same time, with other international centers. These would be beneficial both for a better nephrological care of patients and for boosting scientific research in the field of glomerular diseases. (contact person Cristina Capusa)