Using a population-based cancer registry for recruitment in a pilot cancer control study

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.

Download Full-text

Establishing Accra Population-Based Cancer Registry

Journal of Global Oncology ◽

10.1200/jgo.18.64600 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 66s-66s

Author(s):

P. Opoku

Keyword(s):

Cancer Registry ◽

Policy Development ◽

Cancer Control ◽

Population Based ◽

Cancer Surveillance ◽

Comprehensive Cancer Control ◽

Control Plan ◽

Cancer Data ◽

The Impact ◽

Analyze Data

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.

Download Full-text

THE EXPERIENCE OF THE ENTRY OF THE CHELYABINSK POPULATION-BASED CANCER REGISTRY INTO THE IARC INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES

Problems in oncology ◽

10.37469/0507-3758-2017-63-4-568-571 ◽

2017 ◽

Vol 63 (4) ◽

pp. 568-571

Author(s):

Irina Aksenova ◽

Alla Domozhirova ◽

Andrey Vazhenin ◽

Tatyana Novikova

Keyword(s):

Cancer Registry ◽

International Association ◽

Cancer Control ◽

Cancer Registries ◽

Population Based ◽

Registration System ◽

Control Programs ◽

Cancer Registry Data ◽

Registry System ◽

Epidemiological Pattern

The registration system of cancer cases has been established and perfected over the last half a century across the world. A unified approach to the registration of cancer cases and provision of high quality cancer registry data are the key to reliable epidemiological indicators in oncology as the essential basis for development of cancer control programs. Any deviations in the approach to registration of cancer cases can distort the epidemiological pattern and lead to incorrect prioritization and misallocation of resources. The Russian Federation has experienced a number of problems in the cancer registry system that requires thoughtful organizational solutions. Possible improvements are here addressed on the background of the application of Chelyabinsk Population-based Cancer Registry for inclusion in Cancer in Five Continents and other IARC publications.

Download Full-text

How representative are colorectal, lung, breast and prostate cancer patients responding to the National Cancer Patient Experience Survey (CPES) of the cancer registry population in England? A population-based case control study

BMJ Open ◽

10.1136/bmjopen-2019-034344 ◽

2019 ◽

Vol 9 (12) ◽

pp. e034344

Author(s):

Saleh A Alessy ◽

Elizabeth A Davies ◽

Janette Rawlinson ◽

Matthew Baker ◽

Margreet Lüchtenborg

Keyword(s):

Prostate Cancer ◽

Cancer Patient ◽

Cancer Registry ◽

Case Control Study ◽

Population Based ◽

Case Control ◽

Disease Stage ◽

Breast And Prostate Cancer ◽

Experience Survey ◽

Control Study

ObjectiveTo assess the representativeness of National Cancer Patient Experience Survey (CPES) responders compared with the English cancer registry population in term of age, sex, socioeconomic deprivation, ethnicity, disease stage and median survival.DesignPopulation-based case-control study.SettingEngland.PopulationWe identified 103 186 colorectal, lung, breast and prostate cancer patients responding to at least one survey during 2010–2014 and randomly selected one non-responder from the cancer registry matched on cancer type and yearly quarter of diagnosis.Main outcome measureWe compared age, sex, socioeconomic deprivation, ethnicity and disease stage between the two groups using logistic regression. We also compared survival (in years) using the Mann-Whitney test.ResultsAcross all cancer types survey responders were younger, more likely to have a White ethnic background, to be resident in less deprived areas and diagnosed with earlier stage disease although they varied between cancers. Median survival for responders was also higher than for the cancer registry population (colorectal: 4.8 vs 3.2; lung: 2.0 vs 0.3; breast: 5.7 vs 5.4; and prostate: 5.7 vs 5.2 years; all p-values<0.001).ConclusionCPES responders with the four most common cancers do not necessarily represent all patients with these cancers in terms of demographic characteristics and tumour stage at diagnosis. These limitations should be considered when interpreting findings. To capture the experiences of patients currently underrepresented in CPES, different approaches may need to be taken.

Download Full-text

Estimates of Cancer Incidence in Ethiopia in 2015 Using Population-Based Registry Data

Journal of Global Oncology ◽

10.1200/jgo.17.00175 ◽

2018 ◽

pp. 1-11 ◽

Cited By ~ 20

Author(s):

Solomon Tessema Memirie ◽

Mahlet Kifle Habtemariam ◽

Mathewos Asefa ◽

Biniyam Tefera Deressa ◽

Getamesay Abayneh ◽

...

Keyword(s):

Breast Cancer ◽

Colorectal Cancer ◽

Cancer Registry ◽

Cancer Incidence ◽

Addis Ababa ◽

Cancer Control ◽

Population Based ◽

Non Hodgkin Lymphoma ◽

Males And Females ◽

Population Based Registry

Purpose Noncommunicable diseases, prominently cancer, have become the second leading cause of death in the adult population of Ethiopia. A population-based cancer registry has been used in Addis Ababa (the capital city) since 2011. Availability of up-to-date estimates on cancer incidence is important in guiding the national cancer control program in Ethiopia. Methods We obtained primary data on 8,539 patients from the Addis Ababa population-based cancer registry and supplemented by data on 1,648 cancer cases collected from six Ethiopian regions. We estimated the number of the commonest forms of cancer diagnosed among males and females in Ethiopia and computed crude and age-standardized incidence rates. Results For 2015 in Ethiopia, we estimated that 21,563 (95% CI, 17,416 to 25,660) and 42,722 (95% CI, 37,412 to 48,040) incident cancer cases were diagnosed in males and females, respectively. The most common adult cancers were: cancers of the breast and cervix, colorectal cancer, non-Hodgkin lymphoma, leukemia, and cancers of the prostate, thyroid, lung, stomach, and liver. Leukemia was the leading cancer diagnosis in the pediatric age group (age 0 to 14 years). Breast cancer was by far the commonest cancer, constituting 33% of the cancers in women and 23% of all cancers identified from the Addis Ababa cancer registry. It was also the commonest cancer in four of the six Ethiopian regions included in the analysis. Colorectal cancer and non-Hodgkin lymphoma were the commonest malignancies in men. Conclusion Cancer, and more prominently breast cancer, poses a substantial public health threat in Ethiopia. The fight against cancer calls for expansion of population-based registry sites to improve quantifying the cancer burden in Ethiopia and requires both increased investment and application of existing cancer control knowledge across all segments of the Ethiopian population.

Download Full-text

Using Hospital-Based Cancer Registry Data to Inform Establishment of Population-Based Cancer Registries in Western Kenya

Journal of Global Oncology ◽

10.1200/jgo.18.86900 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 215s-215s

Author(s):

G.C. Chesumbai ◽

A.C. Koskei ◽

N.G. Buziba ◽

F.A. Chite

Keyword(s):

Cancer Patients ◽

Cancer Registry ◽

Cultural Beliefs ◽

Cancer Control ◽

Cancer Registries ◽

Population Based ◽

Referral Hospital ◽

Catchment Population ◽

Cancer Data ◽

Cancer Registry Data

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.

Download Full-text

Surveillance for Jordan Cancer Burden: Jordan Cancer Registry Data 2010-2014

Journal of Global Oncology ◽

10.1200/jgo.18.96600 ◽

2018 ◽

Vol 4 (Supplement 2) ◽

pp. 241s-241s

Author(s):

O. Nimri

Keyword(s):

Breast Cancer ◽

Early Detection ◽

Cancer Registry ◽

Cancer Control ◽

Control Program ◽

Population Based ◽

Control Measures ◽

Mortality Data ◽

Cancer Data ◽

Knowledge To Action

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.

Download Full-text

Cancer Registry and Its Different Aspects

Journal of Enam Medical College ◽

10.3329/jemc.v1i2.11467 ◽

2012 ◽

Vol 1 (2) ◽

pp. 76-80

Author(s):

AMM Shariful Alam

Keyword(s):

Information System ◽

Cancer Registry ◽

Health Information System ◽

Cancer Control ◽

Cancer Registries ◽

Population Based ◽

Cancer Registration ◽

Registry System ◽

Control Programmes ◽

Health Planner

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

Download Full-text

Epidemiologic Pattern of Cancer in Kathmandu Valley, Nepal: Findings of Population-Based Cancer Registry, 2018

JCO Global Oncology ◽

10.1200/go.20.00574 ◽

2021 ◽

pp. 443-452

Author(s):

Ranjeeta Subedi ◽

Meghnath Dhimal ◽

Atul Budukh ◽

Sandhya Chapagain ◽

Pradeep Gyawali ◽

...

Keyword(s):

Cancer Registry ◽

Control Strategies ◽

Cancer Control ◽

Population Based ◽

Public Health Issue ◽

Kathmandu Valley ◽

Community Health Volunteers ◽

Female Community Health Volunteers ◽

Adjusted Incidence Rate ◽

First Time

PURPOSE Although cancer is an important and growing public health issue in Nepal, the country lacked any population-based cancer registry (PBCR) until 2018. In this study, we describe the establishment of the PBCR for the first time in Nepal and use the registry data to understand incidence, mortality, and patterns of cancer in the Kathmandu Valley (consisting of Kathmandu, Lalitpur, and Bhaktapur districts), which comprises 10.5% of the estimated 29 million population of Nepal in 2018. MATERIALS AND METHODS The PBCR collects information from facilities and communities through the active process. The facilities include cancer or general hospitals, pathology laboratories, hospice, and Ayurvedic centers. In the communities, the field enumerators or female community health volunteers collected the data from the households. In addition, the Social Security and Nursing Division under the Department of Health Services, which provides subsidy for cancer treatment of underprivileged patients, was another major source of data. The collected data were verified for residence, accuracy, and completeness and then entered and analyzed using CanReg5 software. RESULTS In the Kathmandu Valley, the PBCR registered 2,156 new cancer cases with overall age-adjusted incidence rate for all cancers of 95.7 per 100,000 population (95.3 for males and 98.1 for females). The age-adjusted mortality rate for males was 36.3 (n = 365) and for females 27.0 (n = 305) per 100,000 population. We found that the commonest cancers in males were lung and stomach, whereas in females, they were breast and lung cancer. Gallbladder cancer was among the top five common cancers in both sex. CONCLUSION These findings provide a milestone to understand the cancer burden in the country for the first time using the PBCR and will be helpful to develop and prioritize cancer control strategies.

Download Full-text