The South Region Cancer Registry: an evaluation of its exhaustiveness in a cohort of lung cancer patients.

Abstract

The regional cancer registry for Southern Portugal (ROR‐Sul) is a population‐based registry set up in 1988 to observe and monitor disease incidence, prevalence and survival. Recently, the need to monitor real‐life use of early approved and high‐priced medicines led to therapeutic effectiveness becoming an emerging area of interest. We aimed to evaluate the exhaustiveness of the ROR‐Sul database, covering around 4.8 million inhabitants. We have used a retrospective cohort study comprising 3457 lung cancer cases diagnosed during 2014 and 2015 and extracted from ROR‐Sul database. Descriptive analysis of missing data was undertaken using IBM SPSS software, v.24. Exhaustiveness of data registry was classified into high (missing values <1%), medium (missing values {1–15%}) or low (missing values > 15%). High exhaustiveness was found for patients demographic information, date of diagnosis, date of first medical appointment, topography, morphology, cancer differentiation, stage of disease and surgery procedure. Medium exhaustiveness was found for biomarkers (ALK, KRAS, and EGFR) results, and immunotherapy regimens. Low exhaustiveness was found for performance status, chemotherapy regimen, and chemotherapy treatment response. The findings highlight the need to transform treatment variables into compulsory, so that the cancer registry may be used to support effectiveness studies. Education, training and behaviour changes must also be considered to foster the process.