NATIONAL CANCER REGISTRIES
The African Cancer Organisation (ACO) promotes the establishment of National Population-Based Cancer Registries (PCR). The whole idea is to collect, store and analyze data on persons with cancer in order to provide complete, accurate and timely cancer report for interventional programs. Such information guide to monitor patient care, prioritise and allocate resources effectively, give understanding of the things we do not yet know, and also act as a driver for policy development for the urgent need of comprehensive cancer controls among countries in Africa.
Countries require cancer surveillance programs to collect and analyze data on the scale of the cancer burden in each country. These are urgently needed in Africa as cancer data sources are scarce. Data can help to evaluate the impact of prevention, early detection/screening, treatment and palliative care programs. ACO cancer registry toolkit enables health institutions implement cancer registries to capture cancer cases diagnosed and/or treated in a facility or a jurisdiction.
The goal of PCR is to generate incidence, prevalence, trends, mortality, and survival rates which are required to help develop a realistic and sustainable cancer control plan.
Cancer registry staff are trained to abstract cancer cases diagnosed and/or treated in facility using a customized cancer notification form designed to capture detailed information on cancer patient demographics, tumour details, treatment, reporting sources and follow-up information based on both analytic and non-analytic active casefinding reportability methods. These cases are then classified and coded using the International Classification of Diseases for Oncology ICD-O. The data is then stored in customized cancer registry software which is configured with various address codes from the registry geography. The cancer registry software checks for duplicate cases, data edits and consolidation. The software tracks down duplicate records and multiple primaries using a probability matching and consistency checking for impossible or rare cases.
Establishing a cancer registry in Africa is challenging but very possible. Conflicts of interests are common norms among new cancer registries. With a good budget and working plan backed by few sincere and dedicated staff, it is possible to sustain a registry to capture all cancer cases within the catchment area, to take advantage of available modern technology to produce timely results.