About the Registry
The Norwegian Renal Registry (NRR) is a lifelong registry for all patients with severe kidney disease. The registry originated from the Norwegian Nephrology Registry and the Norwegian Renal Biopsy Registry, which were merged into a single registry on 1 January 2016.
NRR covers patients who undergo diagnostic renal biopsies and patients who have reached end-stage renal disease (CKD5), both those who do not receive renal replacement therapy and those who are in dialysis or have received a kidney transplant. For historical reasons, the registry also includes patients who have received a pancreas or islet cell transplant.
Purpose
The registry is a permanent epidemiological registry established to provide a national overview of the treatment of patients with severe kidney disease (and islet cell replacement therapy), and to serve as a tool in the planning and follow-up of health services. The registry shall contribute to research, quality assurance, and quality improvement in the assessment, diagnosis, and treatment of these patients.
Statutes of the Norwegian Renal Registry (Norwegian)
Protocol of the Norwegian Renal Registry (Norwegian)
Patients
Patients with severe kidney disease are included in the registry. For historical reasons, the registry also includes patients who have received a pancreas or islet cell transplant, as this was previously performed in combination with kidney transplantation. Many patients with severe kidney disease require chronic renal replacement therapy. The two available treatment modalities are dialysis and kidney transplantation. Diagnosis of kidney disease is often made by means of a renal biopsy of native kidneys. Approximately 800 renal biopsies are performed annually in Norway for the diagnosis of severe kidney disease (excluding cancer diagnostics). Approximately 500 new patients commence renal replacement therapy each year in Norway, and approximately the same number are at stage 5 renal failure (CKD5) without receiving active renal replacement therapy. Most of these patients will receive renal replacement therapy within 1–2 years, but for some no such treatment will be initiated. The prevalence of patients with a functioning kidney transplant is approximately 3,700, and the prevalence in dialysis is approximately 1,700. There are a total of 28 renal departments in Norway that report to NRR. The coverage rate for patients receiving renal replacement therapy is above 99% (analysis 2016–2025), for CKD5 patients without renal replacement therapy 51% (analysis 2019–2023), and for renal biopsy patients 77% (analysis 2019–2022). This gives a weighted overall coverage rate for NRR of above 85%.
Consent forms for patients can be downloaded here in Norwegian and English.
Quality Indicators
The registry maintains several quality indicators. An overview of these can be found at the following link: NRR Quality Indicators
Advisory Board
The registry is organised with an advisory board at the top of the governance structure. An overview of the advisory board members is provided below:
- Consultant Anna Varberg Reisæter (Scientific Director)
- Professor, Consultant Bård Waldum-Grevbo (representative for HSØ)
- Consultant Rannveig Skrunes (representative for HV)
- Associate Professor, Consultant Marius Øvrehus (representative for HMN)
- Professor, Consultant Marit Dahl Solbu (representative for HN)
- Associate Professor, Consultant Sabine Leh (Registry Pathologist)
- Nikolai Raabye Haugen (patient representative from LNT)
- Professor Anders Åsberg (Director, NRR and Section for Dialysis and Transplantation)
- Consultant Lea Landolt (Director, Section for Renal Biopsy)
From left to right: Sabine Leh, Arve Nordlie (now replaced by Nikolai Raabye Haugen), Lea Sandolt, Bård Waldum-Grevbo, Kjersti Lønning, Anders Åsberg, Anna Reisæter, Marit Solbu Dahl, Rannveig Skrunes, Kristin Larsen, Marius Øvrehus, Kirsti Rindal.