History and current status of cancer registration in Russia

• Published in: Cancer epidemiology 2021-08, Vol.73, p.101963-101963, Article 101963
• Main Authors: Barchuk, Anton, Belyaev, Alexey, Gretsova, Olga, Tursun-zade, Rustam, Moshina, Nataliia, Znaor, Ariana
• Format: Article
• Language: English
• Subjects: Annual reports; Brain tumors; Cancer; Cancer epidemiology; Cancer registry; Classification; Coding; Data collection; Data quality; Epidemiology; Hospitals; Humans; Medical research; Melanoma; Mortality; Neoplasms; Neoplasms - epidemiology; Neural coding; Regions; Registration; Registries; Russia - epidemiology; Skin cancer; Software; Tumors
• ISSN: 1877-7821; 1877-783X
• DOI: 10.1016/j.canep.2021.101963

•Cancer registration in Russia has a long tradition, but a clear overall description is not available.•Russia's cancer registration system is population-based, and practices are generally internationally comparable.•Coding and national guidelines for cancer registration are not up to the most recent international recommendations.•The comparability, validity, completeness, and timeliness of regional cancer registries data should be evaluated. Russia, then part of the Union of Soviet Socialist Republics (the USSR), introduced compulsory cancer registration in 1953, but a clear overall contemporary description of the cancer surveillance system in Russia is not available. We summarized historical landmarks and the development of the standards of classification and coding of neoplasms in Russia and described current population-based cancer registries' (PBCR) procedures and practices. Cancer registration is organized according to the administrative division of the Russian Federation. More than 600,000 cases are registered annually. All medical facilities, without exception, are required to notify the PBCR about newly diagnosed cases, and each regional PBCR is responsible for registering all cancers diagnosed in citizens residing in the region. The data collection can be described as passive and exhaustive. Hematological malignancies, brain, and CNS tumors are often not referred to cancer hospitals in some regions, explaining the problems in registering these cancers. Russia's cancer registration system is population-based, and practices seem to be generally internationally comparable. However, coding practices and national guidelines are still outdated and not up to the most recent international recommendations. Further analyses are needed to assess the comparability, validity, completeness, and timeliness of Russia's PBCRs data.