Determining Generalizability of the Canadian Kidney Cancer information system (CKCis) to the Entire Canadian Kidney Cancer Population

Abstract

INTRODUCTION: 
 The Canadian Kidney Cancer information system (CKCis) has prospectively collected data on patients with renal tumors since Jan 1st, 2011 from 16 sites within 14 academic centers in 6 provinces. Canadian kidney cancer experts have used CKCis data to address several research questions. The goal of this study was to determine if the CKCis cohort is representative of the entire Canadian kidney cancer population, specifically regarding demographic and geographic distributions.
 METHODS: 
 The CKCis prospective cohort was analyzed up to Dec 31, 2018. Baseline demographics and tumor characteristics were analyzed including location of patients’ residence at the time of CKCis entry. Geographic data is presented by province, rural versus urban via postal code info (2nd digit=0) and by Canadian urban boundary files. To determine the proportion of RCC patients that CKCis captures, CKCis accruals were compared to projected Canadian Cancer Society RCC incidence in 2016-2017 and the incidence from the 2016 Canadian Cancer Registry. To determine if the CKCis baseline data is representative it was compared to Registry data and other published data when Registry data was not available.
 RESULTS: 
 This CKCis cohort includes 10,298 eligible patients: 66.6% male, median age 62.6 years, 14.6% had metastatic disease at the time of diagnosis and 70.4% had clear cell carcinomas. The CKCis cohort captures about 1,250 patients per year, which represents approximately 20% of the total kidney cancer incidence. The proportion of patients captured per province did vary from 13% to 43%. Rural patients make up 17% of patients with some baseline differences between rural and urban patients. There appears to be no major differences between CKCis patient demographics and disease characteristics compared to national data sources. Canadian heat maps detailing patient location are presented.
 CONCLUSIONS: 
 CKCis contains prospective data on >10,000 Canadian kidney cancer patients making it a valuable resource for kidney cancer research. The baseline demographic and geographic data do appear to include a broad cross section of patients and seem to be highly representative of the Canadian kidney cancer population. Moving forward, future projects will include determining if CKCis cancer outcomes are also representative of the entire Canadian kidney cancer population, and studying variations across provinces and within rural versus urban areas.

Real-Word Experience of Cabozantinib in Metastatic Renal Cell Carcinoma (mRCC): Results from the Canadian Kidney Cancer information system (CKCis)

“…The CKCis data from these centres has been shown to be representative of the Canadian kidney cancer population and thus felt to appropriately capture the national practice pattern. Key patient and tumour characteristics from CKCis are also in line with U.S. Surveillance, Epidemiology, and End Results (SEER) database, and the results from CKCis likely can be extrapolated to settings beyond Canadian academic centres [13]. All centres had research ethics board approval for CKCis projects.…”

A Comparison of Percutaneous Ablation Therapy to Partial Nephrectomy for cT1a Renal Cancers: Results from the Canadian Kidney Cancer Information System

“…Patients were identified from the CKCis database. (15)(16)(17) Institutional research ethics board approval was obtained (REB #11079). Patients were included if they had undergone a PN, or AT (radiofrequency ablation or cryoablation) as the primary treatment method for cT1aN0M0 renal cancers from 2011 to 2021.…”

“…(12) a prospective national cohort collecting data on patients with any renal malignancy from 14 Canadian academic institutions. (15)(16)(17)…”

Outcomes of Radiation Therapy Plus Immunotherapy in Metastatic Renal Cell Carcinoma: Results From the Canadian Kidney Cancer Information System

“…Data were collected from the Canadian Kidney Cancer Information System (CKCis), a curated prospective cohort of kidney cancer patients from 14 academic centers across Canada, shown to be generalizable to the entire kidney cancer population in the country (15). All CKCis participating centres obtained the appropriate local ethics board approval to collect de-identified patient information.…”