Population-Based Cancer Registration in Sub-Saharan Africa: Its Role in Research and Cancer Control (original) (raw)
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International Journal of Cancer, 2015
A questionnaire survey of all active population based cancer registries in sub-Saharan Africa obtained information on their characteristics (size, staffing, funding), methods of working, the nature of any links between registries and their respective Health Authorities (national and/or local), and the use of their data in research or cancer control planning. 23/25 registries (92%) responded. Sources of direct funding and estimated amounts from each source were established, and suggest that it is approximately US$8-9 per case registered. Almost half of the funding is used for routine data collection, processing and analysis. Staffing levels vary, partly as a function of the registry size (approximately one FTE per 300 cases registered). Most data collection is active, using multiple sources (median 10 per registry), and is largely paper-based (abstraction onto paper forms), although all use the computer system CanRegV C for data entry, storage and analysis. Most reporting by the registries is remarkably timely, and in general, their results are widely used by health authorities and other stakeholders in planning and evaluating services, while research output is much more variable. These registries are the source of almost all the existing information on cancer incidence and mortality in sub-Saharan Africa, as published in IARC's "Globocan".
Establishing a Cancer Registry in a Resource-Constrained Region: Process Experience From Ghana
JCO Global Oncology, 2020
PURPOSE In a review of cancer incidence across continents (GLOBOCAN 2012), data sources from Ghana were classified as Frequencies, the lowest classification for inclusion, signifying the worst data quality for inclusion in the analysis. Recognizing this deficiency, the establishment of a population-based cancer registry was proposed as part of a broader cancer control plan. METHODS The registry was examined under the following headings: policy, data source, and administrative structure; external support and training; and definition of geographic coverage. RESULTS The registry was set up based on the Ghana policy document on the strategy for cancer control. The paradigm shift ensured subscription to one data collection software (CanReg 5) in the country. The current approach consists of trained registrars based in the registry who conduct active data abstraction at the departments and units of the hospital and pathologic services. To ensure good governance, an administrative structur...
THE ROLE OF CANCER REGISTRIES.
International Journal of Advanced Research (IJAR), 2019
Cancer registration is important for epidemiology, planning, cancer policy and research. The network of cancer registry across India is widened and a process began in 1960?s.The cancer registration in India is expanded day by day including many Hospital Based Cancer Registries and Population Based Cancer Registries. Projection of cancer incidence is essential for planning cancer control actions, health care and allocation of resources. The incidence or the projection of cancer is made from the cancer registry.The cancer registry is an organization for the systematic collection storage, analysis, interpretation and reporting data on subjects with cancer.The main objective of these registries is to produce statistics on the occurrence and to provide a framework for assessing and controlling the impact of cancer in community. The emphasis will be an epidemiology and public health. The data will be used for obtaining information on burden and patterns of cancer. It can also provide a focus for research into etiology and prevention (primary and secondary) and patient care. The main role of cancer registry is to capturing a clear and complete picture of cancer in India.
The epidemiological transition in sub-Saharan Africa (SSA) has given rise to a concomitant increase in the incidence of non-communicable diseases including cancers. Worldwide, cancer registries have been shown to be critical for the determination of cancer burden, conduct of research, and in the planning and implementation of cancer control measures. Cancer registration though vital is often neglected in SSA owing to competing demands for resources for healthcare. We report the implementation of a system for representative nation-wide cancer registration in Nigeria – the Nigerian National System of Cancer Registries (NSCR). The NSCR coordinates the activities of cancer registries in Nigeria, strengthens existing registries, establishes new registries, complies and analyses data, and makes these freely available to researchers and policy makers. We highlight the key challenges encountered in implementing this strategy and how they were overcome. This report serves as a guide for other low- and middle-income countries (LMIC) wishing to expand cancer registration coverage in their countries and highlights the training, mentoring, scientific and logistic support, and advocacy that are crucial to sustaining cancer registration programs in LMIC.
Journal of registry management, 2013
Cancer control programs are needed worldwide to combat the increases in cancer incidence and mortality predicted for sub-Saharan Africa in the next decades. The effective design, implementation, and evaluation of such programs require population-based cancer registries. Ghana's second largest medical center, the Komfo Anokye Teaching Hospital (KATH) in Kumasi, has made initial progress at developing a cancer registry. This registry, however, is housed in the medical oncology/radiotherapy center at KATH and does not currently include data from other departments that also interact with cancer patients. The aim of this study was to improve KATH cancer registration by compiling cancer data from other major departments that see cancer patients. Using recent population estimates, we calculated crude cancer incidence rates of the "minimally-reported cases" for the Ashanti region. The most common cancers found in this study were breast (12.6 per 100,000), cervix (9.2 per 100,0...
Cureus
Cancer registration is crucial for any country's cancer surveillance and management program. However, there is a lack of systematic evidence on the operational feasibility of hospital-based cancer registries (HBCRs) in low-and middle-income countries (LMICs). We systematically reviewed and described the challenges and prospects of HBCRs in LMICs. We reported the study according to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) guidelines. Electronic databases such as MEDLINE, EMBASE, Web of Science, ProQuest, and CINAHL were searched. Peer-reviewed studies published between January 1, 2000 and June 30, 2021 were included. We used thematic analysis to synthesize the findings discussing barriers and enablers of HBCRs. Thirteen studies were eligible for the analysis after eliminating duplicates, screening of title and abstract, and full-text review. The determinants, registry functionality, data management and abstraction, data security, data quality, organizational readiness, and perception of registry staff influence the implementation of HBCRs. In LMICs, many registries lacked functional documentation and data management systems due to a shortage of skilled professionals. However, in many instances, physicians and patients communicated via digital media, which helped obtain accurate data. The HBCR completeness rate was high in Ethiopia, China, Thailand, and Tanzania. Qualification and capacity building of the data managers was linked to the completeness and accuracy of the registry data, which led to sustainability. In addition, a few registries implemented new worksheets to enhance documentation. This review highlights the need for additional digitalization of the cancer registry to improve its functionality, completeness, follow-up, and output. Further, physicians and data managers require regular training to address cancer registry completeness and reduce errors.
The Lancet. Oncology, 2018
The Global Initiative for Cancer Registry Development partnership, led by the International Agency for Research on Cancer (IARC), was established in response to an overwhelming need for high-quality cancer incidence data from low-income and middle-income countries. The IARC Regional Hub for cancer registration in North Africa, Central and West Asia was founded in 2013 to support capacity building for cancer registration in each of the countries in this region. In this Series paper, we advocate the necessity for tailored approaches to cancer registration given the rapidly changing cancer landscape for this region, and the challenges faced at a national level in developing data systems to help support this process given present disparities in resources and health infrastructure. In addition, we provide an overview of the status of cancer surveillance and activities country-by-country, documenting tailored approaches that are informing local cancer-control policy, and potentially curbi...
Cancer Epidemiology, 2012
Background-The incidence of cancer continues to rise all over the world and current projections show that there will be 1.27 million new cases and almost 1 million deaths by 2030. In view of the rising incidence of cancer in sub-Saharan Africa, urgent steps are needed to guide appropriate policy, health sector investment and resource allocation. We posit that hospital based cancer registries (HBCR) are fundamental sources of information on the frequent cancer sites in limited resource regions where population level data is often unavailable. In regions where population based cancer registries are not in existence, HBCR are beneficial for policy and planning. Materials and Methods-Nineteen of twenty-one cancer registries in Nigeria met the definition of HBCR, and from these registries, we requested data on cancer cases recorded from January 2009 to December 2010. 16 of the 19 registries (84%) responded. Data on year hospital was established; year cancer registry was established, no of pathologists and types of oncology services available in each tertiary health facility were shown. Analysis of relative frequency of cancers in each HBCR, the basis of diagnosis recorded in the HBCR and the total number of cases recorded by gender was carried out. Results-The total number of cancers registered in these 11 hospital based cancer registries in 2009 and 2010 was 6484. The number of new cancer cases recorded annually in these hospital based cancer registries on average were 117 cases in males and I77 cases in females. Breast and cervical cancer were the most common cancers seen in women while prostate cancer was the commonest among men seen in these tertiary hospitals. Conclusion-Information provided by HBCR is beneficial and can be utilized for the improvement of cancer care delivery systems in low and middle income countries where there are no population based cancer registries. Keywords Hospital based cancer registries (HBCR); population based cancer registries (PBCR); low and middle income countries (LMIC)
Can we rely on public data as a source of information for cancer registry in developing countries?
The Turkish journal of gastroenterology : the official journal of Turkish Society of Gastroenterology, 2005
Although a "hospital-based cancer registry" is important in improving patient care, a "population-based cancer registry" with emphasis on epidemiology is important in allocating health care resources and prioritizing public health programs. Because of its reliance on retrieved clinical and para-clinical documents, there is some limitation in registering all cancer incidents in this system, especially in developing countries. In this study we examined the possibility of using public data as a complementary source of information for recording cancers in a population-based cancer registry. Along with the annual census in rural areas, a survey was performed in Golestan province in March 2004 to identify public awareness about cancer incidents in the community. Individuals were questioned about history of cancer in their close relatives during the last two years. Those who reported cancer in their relatives were also asked to name the main organ of involvement. A simi...
Cancer Causes & Control, 2009
Cancer registration data plays a major role in the design and monitoring of cancer control activities and policies, and population-based cancer registries (PBCR) are the main source of information. In developed countries, the healthcare infrastructure enables the registration of quality cancer data. In low and middle Income countries (LMIC), where health care facilities are limited or scarce, cancer registration data may be of low quality. The aim of this article is to demonstrate the value of cancer incidence data for LMIC, even when quality is questionable, as well as to attempt to interpret the messages that the quality indicators convey both for cancer registration and the healthcare system. The study of data submitted to the Cancer incidence in five continents, volume nine (CI5-IX) leads to the conclusion that when PBCR from LMIC cannot provide good quality data it may indicate a deficiency that goes above and beyond the registrar ability. The quality control indicators evaluated provide insight on local conditions for cancer diagnosis and care. Low data quality not only signals lack of collaboration among reporting sources and the inability of the registrar to perform quality abstracting, but also points to specific weaknesses of the cancer care system and can guide improvement goals and efforts.