scholarly journals Historical Evolution of the Malawi National Cancer Registry: A Collaborative Effort to Develop and Sustain an Impactful Cancer Control Resource in a Low-Income Country

2017 ◽  
Vol 3 (2_suppl) ◽  
pp. 3s-3s
Author(s):  
Steady Chasimpha ◽  
Marie-Josèphe Horner ◽  
Charles Dzamalala ◽  
Satish Gopal

Abstract 26 Background: Population-based cancer registration is essential to inform cancer control, yet high-quality cancer registration is absent in much of Africa. We undertook this work to initiate and sustain the Malawi National Cancer Registry (MNCR) to: collect high-quality, population-based cancer data to describe the national burden; inform national cancer control programs and policies; provide a rich national resource for epidemiologic cancer research; and develop collaborations with other partners to increase MNCR impact. Methods: MNCR began in 1989 as a hospital-based pathology registry in Blantyre, Malawi. A population-based component was introduced in 1993 that initially covered the Blantyre district with active case finding. By using this platform, regular national surveys were initiated in 2005 and are carried out every 5 years. Building on this surveillance program, MNCR has pursued collaborations with the Malawi HIV unit to conduct a national HIV-Cancer Match Study to assess the evolving cancer burden in the antiretroviral scale-up era. MNCR has also collaborated with other regional registries through the African Cancer Registry Network. Results: MNCR has published descriptions of the cancer burden in Malawi and is one of few African data sources to contribute to the WHO’s Cancer Incidence in Five Continents. Kaposi sarcoma and cervical cancer are the most common cancers in men and women, respectively. Approximately 93,000 records from MNCR and the two largest HIV cohorts in Malawi have been linked, with preliminary data demonstrating 3,499 cancers among 15,920 antiretroviral initiators in Lilongwe. MNCR has also contributed to regional studies that have described the high incidence and young age for esophageal cancer in Africa. Conclusion: We must continue to improve the quality and coverage of population-based cancer registration throughout Malawi, update the HIV-cancer record linkage at regular intervals, and pursue further opportunities for collaboration. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST No COIs from the authors.

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 65s-65s ◽  
Author(s):  
L. Motsuku ◽  
E. Chokunonga ◽  
M. Sengayi ◽  
E. Singh ◽  
L. Khoali ◽  
...  

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.


2018 ◽  
Vol 4 (Supplement 1) ◽  
pp. 22s-22s
Author(s):  
Khin Saw Aye ◽  
KhinThet Wai ◽  
Yan Naing Swe ◽  
Ssu Wynn Mon ◽  
Nan Cho Nwe Mon ◽  
...  

Abstract 57 Purpose The cancer burden is rising and threatens the social and economic development of low- and middle-income countries, including Myanmar, in the ASEAN region. A quality cancer registry plays a unique role in planning, the evaluation of cancer control program, treatment, and palliative care. To date, there is a paucity of studies in Myanmar that have focused on the implementation of a population-based cancer registry. In addition, the concept of telemedicine with the use of information technology applications as appropriate during implementation needs to be introduced. Such an approach may be beneficial to those working at the grassroots level for the overall improvement of the processes of community reporting, confirmation of diagnoses, effective referral for palliative care, and the establishment of cancer registries. Methods A pilot study was therefore carried out to formulate the strategic approach for establishing a population-based cancer registry in Hlegu Township in Northern Yangon District, Myanmar. First, the cancer data entry software was created and installed on mobile phones as an information technology tool to initialize telemedicine. Next, 15 health assistants in Hlegu Township were trained in the collection of data and the entry of basic information on patients with cancer, including name, age, gender, national ID, education, occupation, primary diagnosis, and the site of metastasis of confirmed cancer cases through mobile phone applications and reported to the cancer database unit at the Department of Medical Research. Results A total of 126 patients with cancer were registered in Hlegu Township from June 2016 to May 2017. The estimated prevalence of disease is 4.6 per 10,000 people. The most common age at cancer diagnosis was 46 to 65 years (73.58%). Female sex was 2.5 times predominant than male sex (72% v 27%). Among 91 registered female patients with cancer, the three most common cancers were breast (32.35%), cervix (16.17%) and uterine (15.17%). Eighty-five patients with cancer (67.46%) received their diagnosis in public hospitals. Overall, 59% of patients received combination treatment, 19% received surgery only, 16% were treated with traditional medicine, 3% were treated with radiotherapy only, and 3% were treated with chemotherapy only. Conclusion This study is a first step in applying the concept of telemedicine to the creation of a population-based cancer registry in a resource-limited setting. More concerted efforts are needed to move toward a well-established population-based cancer registry in Myanmar. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST No COIs from the authors.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 216s-216s
Author(s):  
A. Korir ◽  
R. Gakunga ◽  
N. Okerosi ◽  
A. Karagu ◽  
N. Buziba ◽  
...  

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.


2021 ◽  
pp. 1101-1109
Author(s):  
Zahi Abdul-Sater ◽  
Ali Shamseddine ◽  
Ali Taher ◽  
Fouad Fouad ◽  
Ghassan Abu-Sitta ◽  
...  

PURPOSE National cancer control strategies have been identified as essential tools for reducing and managing the growing burden of cancer in low- and middle-income countries. Cancer registration is an instrumental component of any cancer control strategy, providing the data to inform effective cancer policy. In the Middle East, North Africa, and Turkey (MENAT) region, cancer registration varies immensely and faces multifaceted challenges including protracted conflict. This study investigates and maps out the present capacities and outputs of cancer registration in the MENAT region and identifies thematic barriers facing implementation and utilization of cancer registry data. MATERIALS AND METHODS We used a self-administered online survey with open and close-ended questions targeting national and institutional cancer registry managers in the MENAT countries. RESULTS Registry managers from 19 MENAT countries reported the presence of 97 population-based, 48 hospital-based, and 24 pathology-based registries. Most population-based registries were well- or partially developed. Lack of accurate death records, complete medical records, and communication between stakeholders and deficiencies in trained personnel were critical challenges that were more severe in active conflict zones and neighboring conflict-affected regions. Cancer registration challenges included weak health infrastructure, absence of legislation mandating cancer registration, and disruption of cancer registration because of active conflict and loss of funding. Refugee host countries, such as Lebanon, Turkey, and Jordan, also reported conflict-related challenges including refugee mobility and lack of accurate data on forced migrants. CONCLUSION This study provides a much-needed understanding of the current landscape and contextual challenges affecting cancer registration in the MENAT. These data are important for identifying areas on which to focus regional capacity-strengthening initiatives.


Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 1890-1890
Author(s):  
Christopher R. Cogle ◽  
Michelle R Iannacone ◽  
Ashley Cole ◽  
Daohai Yu ◽  
Alan F. List ◽  
...  

Abstract Abstract 1890 The myelodysplastic syndromes (MDS) became reportable malignancies to U.S. population-based cancer registries including the Surveillance, Epidemiology and End Results (SEER) Program in 2001. Registries capture information on MDS cases through reports sent by hospitals and physicians’ offices. Electronic pathology (E-path) reports generated by private pathology laboratories are another potential source for finding cases; however, the sheer volume of E-path reports generated and the limited resources of cancer registries preclude the review of all E-path reports. Therefore, some registries rely on probability scoring based on keyword hits to identify reports most likely consistent with a diagnosis of cancer. Given the diverse morphologic features of MDS pathology and our earlier observation that MDS is often diagnosed and managed in the outpatient setting (Rollison, et al. Blood 2008), we hypothesized that MDS is often not captured by state cancer registries. To estimate the proportion of uncaptured MDS cases in Florida, all E-Path reports sent to Florida Cancer Data System (FCDS), the state cancer registry, in 2006 were queried using a unique keyword search strategy based on an algorithm of identifying bone marrow biopsy reports that met the inclusion and exclusion diagnostic terminology for MDS. Of 7,111 E-path reports identified, only 18% corresponded to individuals registered in FCDS as having been diagnosed with MDS. To estimate the percentage of uncaptured MDS cases in the remaining 82% of E-Path reports, a stratified random sample of E-path reports were reviewed by a single hematologist/oncologist to determine whether the E-path reports were consistent with MDS and to assign an MDS subtype. The strata for random sampling included: 1) reports that linked individuals registered as having been diagnosed with cancers other than MDS in FCDS (48%) versus those that did not link to FCDS (34%) and 2) four categories based on number of keyword hits. Overall, E-path reports corresponding to 285 individuals were reviewed, of which 71 were determined to have MDS. The percentage of uncaptured cases seemed to be lower for those individuals that were registered in FCDS as having a previous cancer (17%) than that for those who did not link to FCDS (28%) and increased with number of keyword hits. Based on the percentages of uncaptured cases estimated within each of the eight strata, and the distribution of those stratified factors in the total sampling frame, we estimated that 641 MDS cases were likely uncaptured, representing approximately 45% of the captured and uncaptured cases combined. Thus, current case finding mechanisms by population-based cancer registries capture approximately half of the true MDS cases. Compared to MDS cases captured by FCDS, uncaptured MDS cases were younger (< 65) (p=0.01), less likely to have Refractory Anemia (RA) and more likely to have Refractory Cytopenia with Multilineage Dysplasia (RCMD) (p=0.002). Gender and race seemed to be similar between the groups. Together, these data indicate that current population-based case finding methods are not capturing a large percentage of MDS cases. Application of a keyword search strategy to identify cases among E-Path reports is a feasible technique to improve MDS case ascertainment in population-based cancer registries until greater resources are committed. Disclosures: No relevant conflicts of interest to declare.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 66s-66s
Author(s):  
P. Opoku

Background: The African Cancer Organization (ACO) seeks to establish Accra Population-Based Cancer Registry (ACR). The whole idea is to collect, store and analyze data on persons with cancer to provide complete, accurate and timely cancer report for interventional programs. Such information would guide us to monitor patient care, prioritize 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 control in Ghana. 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. The proposed population-based cancer registry will help to act as a driver for policy development and program evaluation as recommended by the WHO. ACR intends to capture cancer cases diagnosed and/or treated within the Greater Accra region of Ghana and then further extend to cover the Central, Eastern, Western and the Volta regions of Ghana later. Aim: The goal of ACR to collect, store and analyze data on persons with cancer to generate incidence, prevalence, trends, mortality, and survival rates which is required to help develop a realistic and sustainable cancer control plan for Ghana. Methods: Cancer registry staff will be trained to abstract cancer cases diagnosed and/or treated within the southern regional geography of Ghana using a customized cancer notification form designed to capture detailed information on cancer patient demographics, tumor details, treatment, reporting sources and follow-up information based on both analytic and nonanalytic active case-finding reportability methods. These cases will then be classified and coded using the ICD-O-3, FIGO and/or SEER Summary Staging 2000 Manual. The data will be stored in customized cancer registry software which will be 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. Conclusion: 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 will be very possible to sustain the registry to capture all cancer cases within the catchment area, to take advantage of available modern technology to produce timely results. ACO is by this seeking for partnership to raise the needed support to embark on this national cancer registry campaign in the region.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 215s-215s
Author(s):  
G.C. Chesumbai ◽  
A.C. Koskei ◽  
N.G. Buziba ◽  
F.A. Chite

Background: Eldoret Cancer Registry (ECR) is both a population-based cancer registry (PBCR) and hospital-based cancer registry (HBCR) located in Uasin Gishu County, western region of Kenya. As HBCR, it collects data on cancer cases seen at the Moi Teaching and Referral Hospital (M.T.R.H.), which is the second largest public referral hospital in Kenya and has a robust cancer diagnosis, treatment facilities and medical specialists. The catchment population of MTRH is estimated at 24 million. Aim: The aim of this study is to determine the number of cancer patients seen at MTRH by county and determine which counties will benefit most from establishment of a PBCR, based on their high incidence. Methods: Case finding is an active process. The E.C.R seeks clearance to collect data from the various data sources within MTRH. Trained cancer registrars visit the units on a regular basis to abstract and update cancer data into CanReg5. Quality checks and analysis of data are mainly done using CanReg5. Results: 16 years of HBCR data were analyzed. Out 20,423 cancer cases, Uasin Gishu county registered 39%. Nandi, Bungoma, Kakamega and Trans-Nzoia counties each registered 8%, 7%, 6% and 6% respectively. E-Marakwet and Busia both had 4% while other counties had below 2% of cancers cases registered for the period of analysis. Conclusion: Notably, there were high numbers of cancer patients registered from counties bordering Uasin Gishu. There is a high likelihood that there are more cases in these areas for patients who did not make it to MTRH due to preference, distance, SES, traditional/cultural beliefs etc. Establishing PBCRs will ensure a more comprehensive capture and reporting of cancer incidence and therefore necessitate proper planning for cancer control programs in those areas to reduce cancer burden and improve services for cancer patients and their families.


2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 241s-241s
Author(s):  
O. Nimri

Background: Cancer registry is an important tool for any successful cancer control program. The cancer-related data from Jordan was vague scarcity. This, urged scholars to set up the first and only population-based cancer registry in Jordan. Which did the Ministry of Health and the Middle East Cancer Consortium (MECC) established it jointly. The registry started to collect data from cases of cancer referred to the treatment and diagnostic facilities throughout the country to improve cancer reporting in the country and define the size of the cancer problem and the pattern of cancer in Jordan; distribution of cancer by geographical locations; age; gender; type and cancer sites for both Jordanians and non-Jordanians. Strategy/Tactics: The Jordan Cancer Registry (JCR) collects cancer data in passive and active methods of case finding, the collected data coded by means of ICD_O3. Quality control measures applied, and the data stored and computerized using CanReg_4 and CanReg_5; then analyzed statistically. World standard population for age adjustment and standardization to facilitate national and international comparison and contrast. Outcomes: Incidence of the most common cancers among Jordanians, distributed by site, age, gender, and geographically for the period 2010-2014. The leading cancer among adults, males was colorectal (11.9%) followed by lung (11.7%), leukemia (9.1%), urinary bladder (8.9%) and prostate (8.1%). While among female cancers are breast (34.4%), colorectal (9.4%); leukemia (6.7%); lymphomas (5.8%) and thyroid (5.3%). Childhood cancers were about (4.9%) of all cancers; leukemia was 1st (34.8%) followed by brain and CNS (20.9%) and lymphomas (17.5%). Whereas the most recent mortality data showed lung is responsible for (21.03%) deaths among males followed by colorectal (11.0%) and leukemia (8.02%). Among females breast deaths (26.8%); colorectal (9.3%) and leukemia (7.2%). What was learned: Knowledge to action, based on the JCR data, Jordan started the Jordan Breast Cancer Program for early detection and screening of breast cancer. We are looking forward starting early detection for colorectal cancer soon.


2012 ◽  
Vol 1 (2) ◽  
pp. 76-80
Author(s):  
AMM Shariful Alam

At both the national and community level, cancer registration schemes are central to research into the nature and causation of cancer, to the planning of health service resources and cancer control programmes, and to the assessment of their efficacy. Cancer registration is thus a part of the modern health information system. There are two major types of cancer registries -hospital-based registries and population-based registries. It is of paramount importance that the issue of development of cancer registry in developing countries should be taken into account. Although, the cancer registry system in Bangladesh is in infantile stage, it should be the aim of the health planner of our country to develop population-based cancer registry as early as possible. The extra difficulties and expenses involved are certainly outweighed by the enhanced validity and usefulness of the data generated. DOI: http://dx.doi.org/10.3329/jemc.v1i2.11467 J Enam Med Col 2011; 1(2): 76-80


2019 ◽  
Vol 57 (216) ◽  
Author(s):  
Gambhir Shrestha ◽  
Kishore Kumar Pradhananga ◽  
Rashmi Mulmi ◽  
Krishna Prasad Subedi ◽  
Bhola Siwakoti

Cancer registration is an organization for the systematic collection, storage, analysis, interpretation and reporting of data on subjects with cancer. Cancer Registry was initiated in 1995 and expanded as National Cancer Registry Program since 2003 by BP Koirala Memorial Cancer Hospital with the support of World Health Organization. NCRP currently includes 12 hospital-based registries. First time in Nepal, BPKMCH piloted population-based cancer registry in 2013, which included 15 districts covering 25.8% of total population of Nepal. NCRP is important to assure the quality of data from all the registries to ensure the availability of reliable and valid data of cancer cases. This will further help policymakers to develop prevention and control strategies of cancer. This paper reviews the current status of cancer registries in Nepal and discusses challenges and future prospective related to NCRP. National cancer registry should further include major hospitals in Nepal to give scientific information on cancer trends by community, provinces and regions and analyze on survival of cancer cases.


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