Data quality in population-based cancer registration: an assessment of the Merseyside and Cheshire Cancer Registry

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.

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Cancer Registration in the Middle East, North Africa, and Turkey: Scope and Challenges

JCO Global Oncology ◽

10.1200/go.21.00065 ◽

2021 ◽

pp. 1101-1109

Author(s):

Zahi Abdul-Sater ◽

Ali Shamseddine ◽

Ali Taher ◽

Fouad Fouad ◽

Ghassan Abu-Sitta ◽

...

Keyword(s):

Middle East ◽

Cancer Registry ◽

North Africa ◽

Online Survey ◽

Control Strategies ◽

Cancer Control ◽

Population Based ◽

Cancer Registration ◽

Middle Income ◽

Conflict Zones

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.

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Indicators of Data Quality at the Cancer Registry Zurich and Zug in Switzerland

BioMed Research International ◽

10.1155/2018/7656197 ◽

2018 ◽

Vol 2018 ◽

pp. 1-11 ◽

Cited By ~ 5

Author(s):

Miriam Wanner ◽

Katarina L. Matthes ◽

Dimitri Korol ◽

Silvia Dehler ◽

Sabine Rohrmann

Keyword(s):

Data Quality ◽

Childhood Cancer ◽

Cancer Registry ◽

Incidence Rates ◽

Cancer Registration ◽

Reference Ranges ◽

Comprehensive Overview ◽

Non Melanoma Skin Cancer ◽

The Stability ◽

Over Time

Data quality is an important issue in cancer registration. This paper provides a comprehensive overview of the four main data quality indicators (comparability, validity, timeliness, and completeness) for the Cancer Registry Zurich and Zug (Switzerland). We extracted all malignant cancer cases (excluding non-melanoma skin cancer) diagnosed between 1980 and 2014 in the canton of Zurich. Methods included the proportion of morphologically verified cases (MV%), the proportion of DCN and DCO cases (2009–2014), cases with primary site uncertain (PSU%), the stability of incidence rates over time, age-specific incidence rates for childhood cancer, and mortality:incidence (MI) ratios. The DCO rate decreased from 6.4% in 1997 to 0.8% in 2014 and was <5% since 2000. MV% was 95.5% in 2014. PSU% was <3% over the whole period. The incidence rate of all tumours increased over time with site-specific fluctuations. The overall M:I ratio decreased from 0.58 in 1980 to 0.37 in 2014. Overall, data quality of the Cancer Registry Zurich and Zug was acceptable according to the methods presented in this review. Most indicators improved over time with low DCO rates, high MV%, low PSU%, relatively low M:I ratios and age-specific incidence of childhood cancer within reference ranges.

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Time Trends Analysis of Cervical Cancer Incidence in Cluj County, Romania, Using Data from a Population-Based Cancer Registry

Current Oncology ◽

10.3390/curroncol28030159 ◽

2021 ◽

Vol 28 (3) ◽

pp. 1706-1717

Author(s):

Radu-Mihai Ignat ◽

Daniela Coza ◽

Patricia Ignat ◽

Radu-Ion Badea ◽

Ofelia Șuteu

Keyword(s):

Cervical Cancer ◽

Data Quality ◽

Cancer Registry ◽

Cancer Incidence ◽

Time Trends ◽

Screening Program ◽

Population Based ◽

Incidence Rates ◽

Cervical Cancer Incidence ◽

Annual Percent Change

(1) Background: Romania has one of the highest cervical cancer incidence rates in Europe. In Cluj County, the first screening program was initiated in 1998. We aimed to investigate the time trends of cervical cancer incidence in women from Cluj County and to evaluate the data quality at the Cancer Registry. (2) Methods: We calculated time trends of standardized incidence rates in the period 1998–2014 and the Annual Percent Change (APC%). To assess data quality, we used the indicators: mortality/incidence ratio (M/I), percentage of cases declared only at death (DOD%), and percentage of cases with pathological confirmation (PC%). (3) Results: The standardized incidence rate increased steadily, from 23.74 cases/100,000 in 1998, to 32/100,000 in 2014, with an APC% of 2.49% (p < 0.05). The rise in incidence affected both squamous cell carcinoma (APC% 2.49%) (p < 0.05) and cervical adenocarcinoma (APC% 10.54%) (p < 0.05). The M/I ratio was 0.29, DOD% 2.66%, and MC% 94.8%. The last two parameters are within the silver standard concerning data quality. (4) Conclusions. Our study revealed an ascending trend of cervical cancer incidence, more consistent for adenocarcinoma, in the context of a newly introduced screening program and partially due to the improvement of the quality of case reporting at the Cancer Registry from Cluj.

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Data Quality and Quality Control of a Population-Based Cancer Registry: Experience in Finland

Acta Oncologica ◽

10.3109/02841869409098430 ◽

1994 ◽

Vol 33 (4) ◽

pp. 365-369 ◽

Cited By ~ 421

Author(s):

Lyly Teppo ◽

Eero Pukkala ◽

Maria Lehtonen

Keyword(s):

Quality Control ◽

Data Quality ◽

Cancer Registry ◽

Population Based

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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

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Estimating the Completeness of Gastric Cancer Registration in Ardabil/Iran by a Capture-Recapture Method using Population-Based Cancer Registry Data

Asian Pacific Journal of Cancer Prevention ◽

10.7314/apjcp.2015.16.5.1981 ◽

2015 ◽

Vol 16 (5) ◽

pp. 1981-1986 ◽

Cited By ~ 8

Author(s):

Mahmoud Khodadost ◽

Parvin Yavari ◽

Masoud Babaei ◽

Alireza Mosavi-Jarrahi ◽

Fatemeh Sarvi ◽

...

Keyword(s):

Gastric Cancer ◽

Cancer Registry ◽

Population Based ◽

Registry Data ◽

Cancer Registration ◽

Cancer Registry Data ◽

Capture Recapture

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Three Years of Population-Based Cancer Registration in Kumasi: Providing Evidence for Population-Based Cancer Surveillance in Ghana

Online Journal of Public Health Informatics ◽

10.5210/ojphi.v8i1.6548 ◽

2016 ◽

Vol 8 (1) ◽

Author(s):

Dennis O. Laryea ◽

Fred K. Awittor ◽

Cobbold Sonia ◽

Kwame O. Boadu

Keyword(s):

Bone Marrow ◽

Developing Countries ◽

Cancer Registry ◽

Population Based ◽

Cancer Surveillance ◽

Cancer Registration

Population-based cancer registration is not common practice in developing countries. Ghana's first PBCR, the Kumasi Cancer Registry was established in 2012. We review data from the registry from 2012 to 2014. Females accounted for the majority (64.2%) of the 1,078 cases of cancer were recorded. Breast (35.1%), Cervix (23.7%), Ovary (7.9%), Liver (3.8%) and Endometrium (3.2%) were the top five cancers among females. Among males, the commonest cancers were Liver (21.8%), Prostate (17.9%), Stomach (4.1%), Lung (3.4%) and Bone marrow (2.9%). Histology was the basis of diagnosis for 58.7%. There is the need to establish more such registries in Ghana.

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