Starting a national, prospective colorectal cancer registry in a developing country: how to do it, potential limitations and results of a pilot study

Abstract

AbstractAimProspective registries of patients operated on for malignancies at a national scale are not common in developing countries. The aim of this work is to report the process of creation of a prospective national colorectal cancer registry in a middle‐income country in Latin America and the main results of a pilot study involving eight centres.MethodThe project involved the creation of a national database including all patients operated on for colorectal cancer in Argentina and a 30‐year plan to make improvements based on the information provided by the registry. The first phase comprised the prospective registration of all patients treated in eight tertiary referral centres during a 6‐month period.ResultsThree hundred and seventeen patients were prospectively recruited during the study period, and 244 (77%) were operated on for colon cancer. The completion rate for all variables was >95%. The median age for the group was 66.88 years. Right‐sided colon tumours were the most frequent. Colorectal specialists performed 257 (81.07%) of the procedures, and in 273 (87.22%) patients a laparoscopic approach was used with an overall conversion rate of 12.45%. Major complication and anastomotic leakage rates for the group were 18.55% and 8.81%, respectively. The mortality rate was 1.94%. Multivariate analysis showed that young patients and operations performed by general surgeons were the most common factors independently related to worse postoperative outcomes. Note that this manuscript describes an early phase of the project that included only eight tertiary referral centres.ConclusionDespite its limitations, this study describes the effort made to generate reliable data on which to base future decisions to improve patient care. Furthermore, it might set an example for other developing countries to start their own registries.