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The Swedish Renal Registry : a nationwide registry for chronic kidney disease of all stages

Faucon, Anne Laure ; Rydell, Helena ; Stendahl, Maria ; Welander, Gunilla ; Lundgren, Torbjörn ; Prûtz, Karl Göran ; Schön, Staffan ; Bonnevier, Ursa ; Kåveryd Hult, Aline and Hedman, Håkan , et al. (2025) In Clinical Kidney Journal 18(9).
Abstract

Background. National registries that capture patients with chronic kidney disease (CKD) across all stages are scarce. We present here the Swedish Renal Registry (SRR), a nationwide prospective register covering the whole spectrum of CKD. Methods. Created in 1991, SRR enrolls CKD patients referred to adult nephrologist care (non-dialysis CKD [ND-CKD], kidney transplantation, maintenance dialysis), with an overall coverage of nearly all nephrology clinics in Sweden. SRR encompasses several interconnected databases in which longitudinal clinical, biological, kidney-related, patient-reported data, as well as provider-level information are collected. This report presents the design of the registry, as well as patients characteristics and... (More)

Background. National registries that capture patients with chronic kidney disease (CKD) across all stages are scarce. We present here the Swedish Renal Registry (SRR), a nationwide prospective register covering the whole spectrum of CKD. Methods. Created in 1991, SRR enrolls CKD patients referred to adult nephrologist care (non-dialysis CKD [ND-CKD], kidney transplantation, maintenance dialysis), with an overall coverage of nearly all nephrology clinics in Sweden. SRR encompasses several interconnected databases in which longitudinal clinical, biological, kidney-related, patient-reported data, as well as provider-level information are collected. This report presents the design of the registry, as well as patients characteristics and temporal trends between 2008 and 2021. Results. A total of 45590 new ND-CKD patients [72 years, 16656 (36%) women, eGFR 26 ml/min per 1.73 m2], and 8829 incident kidney transplant recipients (51 years, 35% women) were enrolled in SRR between 2008 and 2021. SRR also included 16034 new patients [68 years, 5420 (34%) women] on maintenance dialysis [70% hemodialysis (HD), 30% peritoneal dialysis (PD)]. Between 2015 and 2021, 4753 patients [59 years, 1884 (40%) women, eGFR 37 ml/min per 1.73 m2] had a registered kidney biopsy. We observed a decrease in HD incidence (69% to 60%, P for trend <.01) and an increase in PD incidence (26% to 32%, P < .01) and pre-emptive transplantation (4.7% to 7.5%, P < .01). The prevalence of comorbidities is high in all CKD stages and increase as eGFR declines. While nephroangiosclerosis and diabetic kidney disease are the most common etiologies, glomerulonephritis are the most frequent diagnoses in biopsied and transplanted patients. Conclusion. The SRR is a nationwide register which aims to contribute to address gaps in our understanding of CKD, to identify important challenges and health priorities, evaluate real-life clinical management and analyze international variations, improve health outcomes, improve quality of life, and reduce the burden of CKD.

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type
Contribution to journal
publication status
published
subject
keywords
chronic kidney disease, clinical practices, dialysis, registry, transplantation
in
Clinical Kidney Journal
volume
18
issue
9
article number
sfaf238
publisher
Oxford University Press
external identifiers
  • pmid:40937334
  • scopus:105016012252
ISSN
2048-8505
DOI
10.1093/ckj/sfaf238
language
English
LU publication?
yes
id
9df8caec-4a3a-4bcf-89fd-f2d16d4ba18b
date added to LUP
2025-10-15 15:21:00
date last changed
2025-10-29 16:21:07
@article{9df8caec-4a3a-4bcf-89fd-f2d16d4ba18b,
  abstract     = {{<p>Background. National registries that capture patients with chronic kidney disease (CKD) across all stages are scarce. We present here the Swedish Renal Registry (SRR), a nationwide prospective register covering the whole spectrum of CKD. Methods. Created in 1991, SRR enrolls CKD patients referred to adult nephrologist care (non-dialysis CKD [ND-CKD], kidney transplantation, maintenance dialysis), with an overall coverage of nearly all nephrology clinics in Sweden. SRR encompasses several interconnected databases in which longitudinal clinical, biological, kidney-related, patient-reported data, as well as provider-level information are collected. This report presents the design of the registry, as well as patients characteristics and temporal trends between 2008 and 2021. Results. A total of 45590 new ND-CKD patients [72 years, 16656 (36%) women, eGFR 26 ml/min per 1.73 m<sup>2</sup>], and 8829 incident kidney transplant recipients (51 years, 35% women) were enrolled in SRR between 2008 and 2021. SRR also included 16034 new patients [68 years, 5420 (34%) women] on maintenance dialysis [70% hemodialysis (HD), 30% peritoneal dialysis (PD)]. Between 2015 and 2021, 4753 patients [59 years, 1884 (40%) women, eGFR 37 ml/min per 1.73 m<sup>2</sup>] had a registered kidney biopsy. We observed a decrease in HD incidence (69% to 60%, P for trend &lt;.01) and an increase in PD incidence (26% to 32%, P &lt; .01) and pre-emptive transplantation (4.7% to 7.5%, P &lt; .01). The prevalence of comorbidities is high in all CKD stages and increase as eGFR declines. While nephroangiosclerosis and diabetic kidney disease are the most common etiologies, glomerulonephritis are the most frequent diagnoses in biopsied and transplanted patients. Conclusion. The SRR is a nationwide register which aims to contribute to address gaps in our understanding of CKD, to identify important challenges and health priorities, evaluate real-life clinical management and analyze international variations, improve health outcomes, improve quality of life, and reduce the burden of CKD.</p>}},
  author       = {{Faucon, Anne Laure and Rydell, Helena and Stendahl, Maria and Welander, Gunilla and Lundgren, Torbjörn and Prûtz, Karl Göran and Schön, Staffan and Bonnevier, Ursa and Kåveryd Hult, Aline and Hedman, Håkan and Fondelius, Frida and Segelmark, Mårten and Evans, Marie}},
  issn         = {{2048-8505}},
  keywords     = {{chronic kidney disease; clinical practices; dialysis; registry; transplantation}},
  language     = {{eng}},
  number       = {{9}},
  publisher    = {{Oxford University Press}},
  series       = {{Clinical Kidney Journal}},
  title        = {{The Swedish Renal Registry : a nationwide registry for chronic kidney disease of all stages}},
  url          = {{http://dx.doi.org/10.1093/ckj/sfaf238}},
  doi          = {{10.1093/ckj/sfaf238}},
  volume       = {{18}},
  year         = {{2025}},
}