The Danish Nephrology Registry

Clin Epidemiol. 2016 Oct 25:8:621-627. doi: 10.2147/CLEP.S102649. eCollection 2016.

Abstract

Aim of database: The Danish Nephrology Registry's (DNR) primary function is to support the Danish public health authorities' quality control program for patients with end-stage renal disease in order to improve patient care. DNR also supplies epidemiological data to several international organizations and supports epidemiological and clinical research.

Study population: The study population included patients treated with dialysis or transplantation in Denmark from January 1, 1990 to January 1, 2016, with retrospective data since 1964.

Main variables: DNR registers patient data (eg, age, sex, renal diagnosis, and comorbidity), predialysis specialist treatment, details of eight dialysis modalities (three hemodialysis and five peritoneal dialysis), all transplantation courses, dialysis access at first dialysis, treatment complications, and biochemical variables. The database is complete (<1% missing data). Patients are followed until death or emigration.

Descriptive data: DNR now contains 18,120 patients, and an average of 678 is added annually. Data for each transplantation course include donor details, tissue type, time to onset of graft function, and cause of graft loss. Registered complications include peritonitis in peritoneal dialysis patients, causes of peritoneal dialysis technique failure, and transplant rejections. Fifteen biochemical variables are registered, mainly describing anemia control, mineral and bone disease, nutritional and uremia status. Date and cause of death are also included. Six quality indicators are published annually, and have been associated with improvements in patient results, eg, a reduction in dialysis patient mortality, improved graft survival, and earlier referral to specialist care. Approximately, ten articles, mainly epidemiological, are published each year.

Conclusion: DNR contains a complete description of end-stage renal disease patients in Denmark, their treatment, and prognosis. The stated aims are fulfilled.

Keywords: dialysis; epidemiology; kidney; transplantation; uremia.

Publication types

  • Review