Comparability and validity of cancer registry data in the northwest of Russia

Барчук, Антон; Tursun-zade, Rustam; Belayev, Alexey; Moore, Malcolm A; Komarov, Yuri; Moshina, Nataliia; Anttila, Ahti; Nevalainen, Jaakko; Auvinen, Anssi; Ryzhov, Anton; Znaor, Ariana

doi:10.1080/0284186x.2021.1967443

Cited by 10 publications

(13 citation statements)

References 16 publications

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“…Подобный анализ возможен только при совмещении базы данных регистра с госпитальной базой данных и/или базой данных патогистологической лаборатории. Архангельский областной карцер-регистр (АОКР) неоднократно проходил международные аудиты качества [8,9], а Архангельская область (АО) имеет уницентрическую систему оказания онкологической помощи, что делает возможным подобный анализ.…”

Section: Discussionunclassified

Impact of surrogate molecular biological subtype on breast cancer survival: in-depth epidemiological analysis based on the Archangelsk regional cancer registry data

Агаева,

Громов,

Чемакина

et al. 2023

Voprosy onkologii

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Цель. Оценить прогностическое значение суррогатных молекулярно-биологических подтипов при РМЖ по данным Архангельского областного канцер-регистра (АОКР) в период 2010-2020 гг. Материалы и методы. Сплошная выборка записей о больных раком молочной железы из базы данных Архангельского областного канцер-регистра совмещена с данными иммуногистохимического исследования патологоанатомической базы данных, включая уровни рецепторов эстрогенов, прогестерона, Her2neu и Ki67. По сочетанию последних определяли суррогатные молекулярно-биологические подтипы. Оценивали опухолеспецифическую выживаемость и общую выживаемость с помощью методов Каплана-Майера и метода life tables. Степень влияния на прогноз отдельных факторов, доступных в базе данных регистра, оценивали в регрессии Кокса. Результаты. Отобрано 5 357 случаев рака молочной железы, суррогатный подтип был определен в 3 048 случаях. При люминальном А, люминальном В, люминальном В Her2neu-положительном, гормон-рецептор-негативном Her2neu-положительном и трижды негативном раке молочной железы показатели 5-летней ОСВ составили 89,9 %, 78,8 %, 79,3 %, 65,2 % и 66,7 %; 5-летней ОВ — 80,2 %, 69,0 %, 72,4 %, 61,6 % и 59,4 %, соответственно, р < 0,0001. Молекулярный подтип не влиял на прогноз общей выживаемости при I стадии и на прогноз опухолеспецифической выживаемости при I-II стадии. В многомерном анализе сохранился значимо более высокий риск смерти от рака молочной железы и от любой причины для люминального В, гормон-рецептор-негативного Her2neu-положительного и трижды негативного рака сравнительно с люминальном А подтипом. Выводы. Суррогатные молекулярно-биологические подтипы рака молочной железы в российской популяции ассоциированы с прогнозом выживаемости. Необходим дополнительный анализ смертности от причин, не связанных с раком молочной железы.

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Section: Discussionunclassified

Impact of surrogate molecular biological subtype on breast cancer survival: in-depth epidemiological analysis based on the Archangelsk regional cancer registry data

Агаева,

Громов,

Чемакина

et al. 2023

Voprosy onkologii

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“…We analysed data from the ten PBCRs databases of eleven regions of Northwest Russia (the Arkhangelsk oblast (including the Nenets Autonomous Okrug), the Murmansk oblast, the Republic of Komi, the Republic of Karelia, the Pskov oblast, the Kaliningrad oblast, the Leningrad oblast, the Novgorod oblast, the Vologda oblast, St. Petersburg) extracted in December 2019 [ 5 ].…”

Section: Methodsmentioning

confidence: 99%

“…Our previous report described regions in Northwest Russia [ 5 ], but we obtained additional information about cancer registries in the regions (Table 1 ). Registries were established during the 1990s except in Novgorod Oblast (2003), Vologda Oblast (2005) and Arkhangelsk Oblast (2000).…”

Section: Methodsmentioning

confidence: 99%

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Completeness of regional cancer registry data in Northwest Russia 2008-2017

Barchuk,

Tursun-zade,

Nazarova

et al. 2023

BMC Cancer

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Background A national framework for population-based cancer registration was established in Russia in the late 1990s. Data comparability and validity analyses found substantial differences across ten population-based cancer registries (PBCRs)in Northwest Russia, and only four out of ten met international standards. This study aimed to assess the completeness of the PBCR data of those registries. Methods Qualitative and quantitative methods recommended for completeness and timeliness assessment were applied to the data from ten Russian regional PBCRs in Northwest Russia, covering a population of 13 million. We used historic data methods (using several European PBCRs reference rates), mortality-to-incidence ratios (M:I) comparison, and death certificate methods to calculate the proportion of unregistered cases (Lincoln-Petersen estimator and Ajiki formula). Results Incidence rate trends of different cancer types were stable over time (except one region - Leningrad oblast). A slight drop in incidence rates in older age groups for several sites in the Northwestern regions was observed compared to the reference from European countries. Comparing M:I ratios against five-year survival revealed systematic differences in Leningrad oblast and Vologda oblast. Assessment of completeness revealed low or unrealistic estimates in Leningrad oblast and completeness below 90% in St. Petersburg. In other regions, the completeness was above 90%. The national annual report between 2008-2017 did not include about 10% of the cases collected later in the registry database of St. Petersburg. This difference was below 3% for Arkhangelsk oblast, Murmansk oblast, Novgorod oblast, Vologda oblast and the Republic of Karelia. Conclusions Eight out of ten regional PBCRs in Northwest Russia collected data with an acceptable degree of completeness. Mostly populated St. Petersburg and Leningrad oblast did not reach such completeness. PBCR data from several regions in Northwest Russia are suitable for epidemiological research and monitoring cancer control activities.

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“…Age-standardized rates (ASRs) play a key role in comparing cancer incidence and mortality across different populations by accounting for age distribution variations. However, the comparability of ASRs requires careful consideration of methodological variations and harmonization of practices (15,16). This is essential for valid cross-population comparisons, especially considering the variations in cancer types and patient characteristics (17).…”

Section: Introductionmentioning

confidence: 99%

Quality of Data in Population-Based Cancer Registry and its Implications for Cancer Control: A Cross-Sectional Study in Northern Tanzania

Alloyce,

Amour,

Mushy

et al. 2024

Preprint

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Background: Cancer remains a significant global health challenge, especially in low-resource settings where limited data obstructs effective control measures. Reliable cancer registries are essential tools for collecting, managing, and analyzing cancer-related data. In Tanzania, as in many other sub-Saharan African countries, the need for accurate and timely cancer data is critical for informed decision-making. This study assesses the data quality of a population-based cancer registry in Tanzania to improve cancer control efforts. Methodology: This study adopted a descriptive cross-sectional study design to analyze 9617 records of cancer patients in population-based cancer registry database (Canreg5) from 2018 to 2022. Data analysis is done using Stata 17.0 and IARC validity check software. The percentage of complete, valid, and timely records was computed and compared with the required target. Comparability analysis compared age-standardized rates (ASR) and percentages of morphologically verified (MV%) against the standards in sub-Saharan Africa. Results: In the defined period from 2018 to 2022, a total of 9,617 records were included in the final analysis. The study found high data quality indicators: completeness at 94% for mandatory variables, validity at 76%, timeliness at 93%, and a high comparability with cancer data in sub-Saharan Africa at 60%. However, variations were noticed in age-standardized rates (ASR) and morphologically verified cases (MV). For comparability findings, mouth and pharynx cancer had lower age-standardized rates (ASR) for males (5.7) and females (3.4) but high morphological verification rates. Esophageal cancer had significantly higher ASR for males (22.0) and females (6.1), with moderate morphological verification rates. Stomach cancer had lower ASR but higher verification rates. Colon, rectum, and anus cancer had comparable ASR and higher verification rates. Conclusion: The data quality in the population-based cancer registry at the study site was optimal, with a high proportion of completeness, timeliness, and comparability, but with suboptimal validity of data, particularly for date format, and unlike combinations that highlight continuous monitoring and quality checks. While data quality is vital, challenges like missing and invalid records persist, necessitating reinforced protocols and validation measures.

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Comparability and validity of cancer registry data in the northwest of Russia

Cited by 10 publications

References 16 publications

Impact of surrogate molecular biological subtype on breast cancer survival: in-depth epidemiological analysis based on the Archangelsk regional cancer registry data

Impact of surrogate molecular biological subtype on breast cancer survival: in-depth epidemiological analysis based on the Archangelsk regional cancer registry data

Completeness of regional cancer registry data in Northwest Russia 2008-2017

Quality of Data in Population-Based Cancer Registry and its Implications for Cancer Control: A Cross-Sectional Study in Northern Tanzania

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