Justification of necessity of population cancer register of the Russian Federation
The purpose of the register of patients with malignant neoplasms (cancer register -CR) is to provide reliable information on the incidence, mortality from malignant neoplasms (MN), the state of specialized cancer care.
Oncology centers of the RF conduct personal records of patients with malignant neoplasms since 1950.
In P. Hertsen Moscow Oncology Research Center - branch of FSBI NMRRC of the Ministry of Health of Russia to conduct a qualitative accounting of cancer in the Russian Federation methodical platform of formation of cancer patients register has been developed, on the basis of which there was created information and analytical system of cancer registry (CR RF) IAS “Cancer Registry”.
Formation of a single cancer registry system is determined by orders of the Ministry of Health of Russia:
- No. 420 of 23.12.1996, “On the establishment of the State Cancer Registry” (approved statement of the cancer registry, which includes the structure, purpose and function),
- No. 204 of 14.07.1997, “On the organization of the center of information technology as part of P. A. Hertsen Moscow Oncology Research Center - branch of FSBI NMRRC” of the Ministry of Health of Russia (RCITESO) (design and software development for all levels of the state cancer registry.),
- No. 222 of 27.06.2001, (re-approval of provisions on Information Technology Center), No.135 of 19.04.1999, “On improvement of the National Cancer Registry System” (the list of qualifiers, fully formalized registration forms),
- No. 915n of November 15, 2012 “On approval of the provision of medical care on the Oncology profile” (registered in the Russian Ministry of Justice on April 17, 2013 No. 28163).
Cancer register of the Russian Federation is a multi-level system consisting of the federal and territorial segments. Regional register serves for the registration of patients with malignant neoplasm at regional or departmental offices of the Russian Federation, the leading accounting of cancer patients, monitoring malignant neoplasm among the population of the subject of the Russian Federation (territorial population cancer registry). The federal register accumulates impersonal data of territorial cancer registries organized in oncology centers of the RF subjects.
At the present time (December 15, 2015) combined database of cancer register of the Russian Federation contains records of more than 5.1 million patients with malignant neoplasm (subject to accounting patients with diagnoses that fit into the column C00-D09 of International Classification of Diseases revision 10 (ICD-10), regardless of the origin of the tumor, age and sex of cases) of the 44 subjects of the Russian Federation (a joint database on the server of the Russian Federation Ministry of Health is kept since 2010).
Cancer register on the level of the subject registers, accounting and monitoring of malignant neoplasms throughout the dispensary observation of cancer patients. Register database is constantly replenished not only by the introduction of new information about patients with malignant neoplasms, but also by entering more information on previously reported cases.
The Cancer Registry at the district level and on the level of entire subject of the Russian Federation is being personified accounting of cancer patients, only impersonal information is transmitted to the federal level in relation to the requirements of the Federal Law No. 152-FZ “On Personal Data”.
IAS “Cancer Registry” has the ability to transfer depersonalized database of cancer registers on the subject of the Russian Federation Ministry of Health of Russia into a unified database server of Cancer Register of the Russian Federation.
When creating software for the automated maintenance of Cancer Register of the Russian Federation we used advanced development tools that enable a high degree of reliability and stability, undemanding to quality and speed of communication channels, minimum system requirements, and the ability to integrate with regional information systems.
IAS “Cancer Registry” provides the possibility of forming an approved public reporting on oncology (forms No.7 and No.35) and reports in any form in the format.
IAS “Cancer Registry” (certificate of state registration No. 2011617156) is provided with a system for verification of information and measures to protect the confidentiality of information and protection, according to the Federal Law No. 152-FZ of July 27, 2006 “On Personal Data”, IARC (International Agency for Research on Cancer) and IACR (International Association of Cancer Registers) recommendations.
For a detailed analysis IAS “Cancer Registry” provides the following features:
- Handling with random sampling of patients, with the possibility of sampling by using ad hoc queries
- The ability to build a database that contains an arbitrary set of fields (the system allows to analyze more than 100 fields)
- Calculation of any indicator is made on an arbitrary slice of database
- With the release of any version the update includes relevant data on the population of the Russian Federation subjects
- Calculation of “gross” (intensive) indications (hereinafter both for incidence and for mortality) for any age group
- Calculation of standardized indicators (on the world standard of the age distribution of the population)
- Calculation of cumulative indexes for any age group
- Calculation of cumulative risk for any age group
- Calculation of median and arithmetic average ages
- Calculation of the static error performance
- Calculation of confidence intervals indicators
- Calculating survival rate by the direct method, actuarial method, the Kaplan-Meier method and the hybrid method
The system provides tools for data visualization, the analytical tables, in the form of three-dimensional charts and graphs, cartographic analysis.
The world organization of cancer registries started in the middle of the last century, since 1942 the first population-based registries of cancer started under the auspices of the Danish Cancer Society. It is the oldest register that serves the entire population of Denmark, performing lifelong monitoring of patients. The publication of the IARC “Cancer on Five Continents” vol.10 (2012) presented 290 registers from 68 countries.The website of a cancer registry for downloading updates - cancer-reg.ru
In Modern Oncology Atlas (second edition, American Cancer Society, 2014) cancer registry of the Russian Federation is estimated as high-quality regional.
Inquiries on the register:
Phone: +7 (495) 945-11-57