z-logo
open-access-imgOpen Access
The South Region Cancer Registry: an evaluation of its exhaustiveness in a cohort of lung cancer patients
Author(s) -
Verdasca Jessica,
Costa Filipa A.,
Ramos Catarina,
Murteira Rodrigo,
Miranda Ana
Publication year - 2019
Publication title -
thoracic cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.823
H-Index - 28
eISSN - 1759-7714
pISSN - 1759-7706
DOI - 10.1111/1759-7714.12915
Subject(s) - medicine , cancer registry , cohort , lung cancer , cancer , population , medical record , database , oncology , environmental health , computer science
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.

The content you want is available to Zendy users.

Already have an account? Click here to sign in.
Having issues? You can contact us here