The BC Glomerulonephritis Registry: the justification for a provincial registry of patients with glomerulonephritis

Project number: 
15-070
Approval date: 
Tuesday, February 9, 2016
Principal Investigator: 
Barbour,Sean
Institution: 
University of British Columbia (UBC)
Funding Agency: 
Not Available
Datasets requested: 
Income band (Statistics Canada)
Births (BC Vital Statistics Agency)
consolidation - census geocodes
PharmaNet
bc cancer
Deaths (BC Vital Statistics Agency)
Medical Services Plan (BC Ministry of Health)
Consolidation - demographic (Ministry of Health)
Citizenship and Immigration Canada (CIC) Permanent Residents
Hospital Separations (BC Ministry of Health)
Consolidation registry (Ministry of Health)
Research objective: 

RATIONALE:
In order to demonstrate the need for longitudinal and prospective data collection through the BC GN Registry, this project will use existing administrative datasets to describe the incidence, outcomes, and variability in care of patients with GN in BC. These results will identify limitations of database linkage, and based on these limitations will inform the development of key data elements that can only be collected using a dedicated GN registry.

OVERALL GOAL:
To describe the incidence, outcomes, and variability in management of patients with GN in BC, and to determine whether these differ across geographic region, income levels, era, or race.

SPECIFIC RESEARCH QUESTIONS:
1. What are the incidence and characteristics at biopsy for each type of GN in BC, including MN, FSGS, IgAN, MCD, lupus nephritis, and anti-neutrophil cytoplasmic antibody (ANCA) vasculitis, and do these vary by geographic region, era, race, or income level?
2. What is the risk of death and progression to ESRD for each type of GN in BC, and do these vary by geographic region, era, race, immunosuppression (IS) exposure, or income level?
3. What is the risk of cardiovascular events for each type of GN in BC and do these vary by geographic region, era, race, IS exposure, or income level?
4. What proportion of patients with GN in BC is managed according to established GN recommendations, and does this vary by geographic region, era, race, or income level?
5. What proportion of patients with GN in BC experience serious infectious or malignancy complications, and does this differ by geographic region, era, race, IS exposure, or income level?
6. What is the risk of a serious complication after renal biopsy in patients with GN in BC, and does this vary by geographic region, era, race or income level?
7. What is the frequency of visits with nephrologists and other physicians or hospitalizations in patients with GN in BC, and does this vary by geographic region, era, race or income level?
8. What is the cost-effectiveness of different guideline-based immunosuppression treatments for GN?

SPECIFIC HYPOTHESES
1. Amongst patients with GN in BC, there are significant differences in the incidence, characteristics at biopsy, the proportion of patients managed according to established recommendations, the frequency of physician visits or hospitalizations, and the risks of clinically relevant outcomes (death, ESRD, infections, malignancies or cardiovascular events) across types of GN, geographic region, race, era, income level and use of IS.
2. The risk of a serious complication after renal biopsy in GN patients in BC is low, and is not different across types of GN, geographic region, era, race, or income level.
3. After accounting for the long-term risks of death, ESRD, infections, cancer and CVD, the cost-effectiveness of newer more expense but less toxic recommended therapies in GN is more favourable than traditional treatments.


Page last revised: December 5, 2017