Based on past EUROCARE HR studies, information on tumour location, morphology, diagnostic investigations, stage at diagnosis, treatments (chemo, radio, and surgery), together with molecular subtypes and further factors potentially influencing prognosis (co-morbidity at diagnosis, body weight, height, body mass index, smoking habits, and performance status) are prospectively collected by cancer registry personnel accessing clinical records, meaning that HR variables are collected for cases diagnosed in the latest or current year of registration. Thus, as cases are registered to be included in incidence series, additional information on care items can be added at the same time to the variables usually recorded by the registry. This approach is useful to obtain timely information on patterns of care and allows for descriptive analyses on the frequency of procedures or adhesion to guidelines. In order to have an adequate follow-up for studying survival, the evaluation of survival would be postponed compared to past HR studies, which recruited cases retrospectively.
Access databases* are available to all participating cancer registries to collect all the requested information, thus reducing the data transcript and facilitating the data transmission. However, either txt, excel or csv formats compliant with the study protocols are also accepted.
Quality, completeness and internal consistency of the HR data received are centrally checked by automated procedures prepared by the coordinating center.
Systematic checks of data are periodically performed to correct errors and solving problems timely. Records with errors or incongruence are sent back to the cancer registry for correction.
Examples of reports provided to cancer registries are here available.