Queensland glomerulonephritis registry

Abstract

Aim: To establish a registry for biopsy-proven glomerulonephritis (GN) in Queensland (QLD) and to provide a dataset that will enable prospective research into the epidemiology, clinical course, prognostic indicators and treatment of GN in the Australian setting. Background: GN causes a significant burden on the healthcare systemand in its contribution to end stage renal disease (ESRD). GN registries have thus been established in many countries/regions to further understanding and ultimately improve clinical outcomes. There is a paucity of data pertaining to the spectrum of GN in Australia, and therefore, initiation of a registry is justified. Methods: Demographic, clinico-pathological and therapeutic information will be collected from all patients with biopsyproven GN in QLD. Data will be collected at time of renal biopsy and at 3 monthly intervals there after. A collaborative database will follow these patients till the earliest of dialysis-dependence, transplantation, death or withdrawal from registry. Key outcomes will be patient survival, change in renal function and progression to ESRD across different GN sub-types, geographic location and socio-economic status. Phase I will analyse the GN cohort of patients already consented to the CKD. QLD registry (>6000 patients), with Phase II including incident biopsyproven GN cases. Conclusion: The QLD. GN registry will provide a robust, transparent and real-time dataset capable of improving patient care, supporting observational research in GN. Furthermore, the dataset may facilitate identification of key patient populations for recruitment into clinical trials.<br />