Coding practice in national and regional kidney biopsy registries

Dendooven, Amélie; Peetermans, Han; Helbert, Mark; Nguyen, Tri Q.; Marcussen, Niels; Nagata, Michio; Gesualdo, Loreto; Perkowska-Ptasinska, Agnieszka; Capusa, Cristina; López-Gómez, Juan M.; Geddes, Colin; Abdul-Hamid, Myrurgia A.; Segelmark, Mårten; Yahya, Rosnawati; Garau, Mariela; Villanueva, Russell; Dorman, Anthony; Barbour, Sean; Cornet, Ronald; Hopfer, Helmut; Amann, Kerstin; Leh, Sabine

doi:10.1186/s12882-021-02365-3

BMC Nephrology

Table 2 Overview over kidney biopsy registries. Data are based on an online questionnaire except for one registry

From: Coding practice in national and regional kidney biopsy registries

	Registry	Data collection	Diagnosis registered	Tx included	Coverage	In use (years)	Coding system					Who codes	Self-reported satisfaction (0–5)
	Registry	Data collection	Diagnosis registered	Tx included	Coverage	In use (years)	Proprietary	ERA-EDTA	SNO-MEDSNOMED (older version)	SNOMED CT	ICD-9	Who codes	Self-reported satisfaction (0–5)
1	British Columbia Glomerulonephritis Registry	C, P	C, P	No	Regional	5–10	x					Nephrologist	4
2	Czech Registry of Renal Biopsies	C	C, P	No	National	> 20	x					Nephrologist	4
3	Flemish Collaborative Glomerulonephritis Registry	C, P	C, P	No	Regional	< 5	x	x				Nephrologist Pathologist	4
4	Italian Registry of Renal Biopsies	C, P	C, P	Yes^a	National	> 20		x				Nephrologist Pathologist	3
5	Japanese Renal Biopsy Registry	C	C, P	Yes^a	National	11–20	x					No data	3
6	Limburg Renal Registry (Netherlands)	C, P	C, P	Yes^a	Regional	> 20	x		x		x	Pathologist	3
7	Malaysian Registry of Renal Biopsies	C, P	C, P	Yes^a	National	11–20	x					Nephrologist	4
8	National Pathology Databank Denmark (PATOBANK)	No data	P	Yes	National	11–20			x^c	x		Pathologist	2
9	Norwegian Renal Registry	C, P	C, P	No	National	> 20	x	x				Nephrologist Pathologist	3
10	Philippine Registry of Glomerular Disease	C, P	C, P	Yes	National	11–20	x					Nephrologist Pathologist	4
11	Polish Registry of Renal Biopsies	C	P	No	National	5–10	x					Pathologist	No data
12	Scottish Renal Biopsy Registry	C, P	C, P	Yes	National	11–20		x^b				Nephrologist	3
13	Spanish Registry of Glomerulonephritis	C, P	C, P	No	National	> 20	x					Nephrologist	4
14	Swedish Renal Registry	C, P	C, P	No	National	< 5		x	x			Nephrologist	4
15	Uruguayan Registry of Glomerular diseases	C, P	C, P	No	National	> 20	x					Nephrologist Pathologist	4
16	National Renal Biopsy Registry Taiwan^d	C	C,P	Yes^a	National	5–10	x					Nephrologist	No data

C clinical data, P pathology data. ^aOnly clinical data, no pathological data related to Tx; ^bProprietary codes based on ERA-EDTA PRD; ^cSNOMED (older version), but mapped to SNOMED CT; ^dDid not participate in the online questionnaire; data based on published paper [33]

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ISSN: 1471-2369

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