An overview of the British Columbia Glomerulonephritis network and registry: integrating knowledge generation and translation within a single framework

Abstract

BackgroundGlomerulonephritis (GN) is a group of rare kidney diseases with a substantial health burden and high risk of progression to end-stage renal disease. Research in GN has been limited by poor availability of large comprehensive registries. Substantial variations in access to and administration of treatment and outcomes in GN have been described. Leveraging provincial resources and existing infrastructure, the British Columbia (BC) GN Network is an initiative which serves to combine research and clinical care objectives. The goal of the BC GN Network is to coordinate and improve health care, including robust data capture, on all patients with GN in BC, a Canadian province of over 4.6 million people. This provincial initiative will serve as a model for Canadian or other national and international endeavours.DescriptionThe BC Provincial Renal Agency (BCPRA) is the provincial governmental agency responsible for health delivery for all kidney patients in BC. The BC GN Network has been created by the BCPRA to ensure high quality and equitable access to care for all patients with GN and is a platform for evidence based clinical care programs and associated health policy. All patients with biopsy-proven GN are registered at the time of kidney biopsy into the BCPRA provincial database of kidney disease patients, forming the BC GN Registry. Thereafter, all laboratory results and renal related outcomes are captured automatically. Histology data and core clinical variables are entered into the database. Additional linkages between the GN Registry and administrative databases ensure robust capture of medications, hospital admissions, health care utilization, comorbidities, cancer and cardiac outcomes, and vital statistics.ConclusionsThe BC GN Network and Registry is a unique model in that it combines robust data capture, data linkages, and health care delivery and evaluation into one integrated system. This model utilizes existing health infrastructure to prospectively capture population level data on patients with GN, producing a rich dataset capable of real-time identification and evaluation of GN health policy initiatives, of supporting observational cohort studies and health services research in GN, and of facilitating patient recruitment into GN clinical trials.

A large, international study on post-transplant glomerular diseases: the TANGO project

“…Creation of a large biorepository will also facilitate mechanistic studies investigating disease pathogenesis and the identification of noninvasive, reliable immune monitoring assays to predict disease recurrence and response to treatment. Similarly designed large international registries have been postulated to collect high quality data about other rare diseases such as atypical hemolytic uremic syndrome or glomerular diseases in native kidneys [ 34 , 35 ].…”

Socioeconomic Position and Incidence of Glomerular Diseases

“…This was a retrospective, population-level cohort study of individuals with incident glomerular disease diagnosed from a native kidney biopsy between January 1, 2000 and December 31, 2012 in British Columbia, Canada. All kidney biopsy specimens in mainland British Columbia during the study period were processed in a single tertiary referral laboratory, registered in the British Columbia Renal Pathology database, and analyzed by one of two kidney histopathologists who prospectively recorded the primary diagnosis using a standardized coding system (14). We included patients with membranous nephropathy, IgA nephropathy, and FSGS.…”

Disease-specific incident glomerulonephritis displays geographic clustering in under-serviced rural areas of British Columbia, Canada

“…6 A significant limitation was the inability to describe incidence rates by specific glomerular disease subtypes. The absence of accurate data on the incidence of glomerular diseases is a glaring omission in a field dominated by high-quality basic science and translational research, and it limits the ability to advocate for glomerular disease-specific health care resources 16 and plan recruitment for clinical trials. 17 To address this deficiency, we leveraged data from a unique provincial, centralized pathology database that records all patients with a biopsy-proven diagnosis of glomerular disease from a large, well defined, and geographically diverse source population.…”

“…The BC Renal Pathology Database contains biopsy details, clinical data at the time of biopsy, and a unique patient identifier. 16 The pathology database was linked to the following provincial health administrative databases using the unique patient identifier: (i) the BC Renal Agency, to capture race, additional laboratory and blood pressure data, and ESKD status; (ii) BC Vital Statistics, to capture date of birth and sex; (iii) the BC Ministry of Health Medical Services Plan, to capture location of residence. Further information about each data source can be found in the Supplementary Methods.…”