Strengthening African Population-Based Cancer Registration Through Regional Mentorship: UICC Fellowship Experience at Zimbabwe National Cancer Registry

Abstract

Background: South Africa (SA) recently established an urban population-based cancer registry in Ekurhuleni metropolitan district in Gauteng Province. The Ekurhuleni Population-Based Cancer Registry (EPBCR) aims to inform cancer policy and comprehensive cancer control programs. The registry covers 3.5 million residents including public/private, rural/urban patients and a mix of the multiethnic SA population. The first complete year's data will be published in April 2018. It is crucial that high-quality data collected by newly established registries are comparable regionally and globally. The Union for International Cancer Control (UICC) fellowship provides a practical opportunity for South African National Cancer Registry staff to learn from the Zimbabwe National Cancer Registry (ZNCR), a well-established population-based registry in the region. Aim: To enhance the SA EPBCR through observation and application of methods for population-based cancer registration used at the ZNCR. Methods: A desktop review of published and unpublished articles/reports of the ZNCR was conducted. Semi-structured informal interviews were conducted with registry staff to understand data processes from case finding to reporting. Representative data sources were visited to understand case-finding processes. Results: The ZNCR was established in 1985 through a collaborative research agreement between the Ministry of Health (MoH) and International Agency for Research on Cancer (IARC). Its activities are overseen by a 17-member constituted multidisciplinary advisory committee. The registry staff comprise one registrar, one executive assistant (EA) and four health information assistants (HIA). The process of ensuring quality data are guided by the African Cancer Registry Network and the International Association of Cancer Registries standards for population-based cancer registries. The ZNCR uses a combination of active and passive case-finding methods where HIAs have unrestricted access to patient information in private and public sectors such as hospitals, pathology laboratories, radiotherapy centers and death registries. HIAs conduct patient interviews for accurate demographics and to complete missing information. Cases are coded according to International Classification of Diseases for Oncology-V3 and Canreg software is used for data entry, quality control and analysis. The hard copies are stored in locked cabinets in offices with restricted access. The data are then used for reporting and research. Conclusion: The support of government, commitment of advisory committee volunteers, highly trained and experienced staff are key elements behind the success of ZNCR. Strict adherence to international practices for population-based cancer registration has enabled ZNCR to produce high-quality data for research and cancer programs. The processes used by ZNCR will be customised and implemented at EPBCR.