Challenges in surveillance of all cancer cases: The Chilean National Cancer Registry.

Abstract

Cancer causes millions of deaths worldwide, making its registration essential. There are clinical, hospital, and population-based registries in place. The latter is the gold standard for information on cancer incidence and survival in a defined region. Chile has five population-based registries located in specific areas of the country. The Chilean National Cancer Registry emerged with the challenge of creating a tool encompassing all three types of registries to identify the number of cancer cases by type. Its design involved a series of actions to achieve consensus among various actors regarding information, validation, and events to be registered. Four stages were identified in the care and registration process: suspected diagnosis, morphological confirmation (biopsy), clinical resolution (oncology committee, including treatment recommendations), treatment, and oncological follow-up. The platform's development (from 2018 to 2021) involved gathering information and agreements on the requirements for co-designing the registry, including a successful pilot program with over 20 public and private healthcare facilities that recorded nearly 7500 cancer cases. The deployment and use of the National Cancer Registry at a national level depends on the healthcare authority. It is an information system that continuously and systematically collects, stores, processes, and analyzes data on all cancer cases and types occurring in the country. This work presents the design and development of the tool, the challenges addressed, as well as its strengths and weaknesses.