Development of a national cancer registry in a low resourced country: the case of Kenya national cancer registry programme

Abstract

Background: Population-based cancer registration represents the gold standard for the provision of information on cancer incidence in a defined population (Bray F, et. al, IARC Technical Report No. 43). In Kenya, the incidence and prevalence of cancer has not been well documented. The existing population-based cancer registries (PBCRs) cover less than 10% of Kenya's population. Kenya is made up of 47 administrative counties and has a population of over 45 million people. Aim: To establish a National Cancer Registry Program that will compile national data on incidence, mortality and trends of cancer in Kenya over time. Methods: Three functional PBCRs have been in existence covering 3 counties: Nairobi, Eldoret and Kisumu. Needs assessment was conducted in the 3 registries. Additional support and resources were provided. New registries were set up in different geographical regions of Kenya. A centralized office to host the national registry was established and equipped at the Centre for Clinical Research, Kenya Medical Research Institute. Sensitization and awareness activities targeting the leaders in the selected counties were undertaken. Similarly trainings and technical support of the regional registries were conducted. Data were collected on to case registration forms, coded using the International Classification of Diseases for Oncology (ICD-O); data entry, validation and analysis done using IARC software CanReg5. Results: Variations in cancer occurrence in the different counties were noted. However the leading cancers were somewhat similar in the 8 counties with prostate and esophageal cancers being the leading in men while breast and cervical cancer being top among women. These variations could provide understanding on causation of certain types of cancers. Data highlights the need to develop and expand intervention programs like HPV vaccination, screenings, early detection and early treatment. Governments' allocation of resources to cancer registries and surveillance programs is important as well as building partnerships. Conclusion: In countries with limited resources it is expensive to develop a national cancer registry covering the entire country. Our program demonstrates that a national cancer registry program can be established by setting up regional population-based cancer registries that covers a reasonable population of the entire country and aggregating the data in a centralized system. Population-based cancer registries are critical in generating data on burden of cancer in specified populations. These data should be used to inform effective cancer control programs and research.