Basic principles of cancer registries
A cancer registry is a collection of information about cancer cases, their history and treatment. Valid statistical, epidemiological or clinical study, assessment of risk factors for cancer, evaluation of treatment effectiveness and survival rates, predictive estimations of onco-epidemiological tendencies can be performed based on such a personalized information database only.
Cancer registries are divided into the hospital registries and population-based registries. Population-based cancer registry collects information about all cancer cases occurring within a certain territory, the data are used for the study of cancer epidemiology at the territorial level. Hospital cancer registry collects information about patients of a medical institution (e.g., an oncological dispensary), its data are mostly used to assess the effectiveness of therapy, to analyse the work of the clinic, serve for conducting clinical trials.
The oncological disease is chronic by its nature, the process of its treatment often takes years, and monitoring of cancer patient does not stop after treatment. Information about the initial and subsequent treatment, the complications, recurrences, metastases and death of patient (from cancer or other causes) is recorded in the registry as well. This allows assessing the state of diagnostics and treatment and estimating the survival rates of cancer patients. Obtaining such information requires following the routine technology of follow-up of cancer patients and monitoring their vital status, which involves, besides medical institutions, the Civil Registry Bureaus and passport offices.
Cancer registries operate in many countries for decades, now most of them are computerized. Implementation of information technology has allowed automation of many of the procedures of registration and data processing, improved the completeness and quality of the information recorded.
Cancer registration system in Ukraine
The most important feature of the health care system in Ukraine is the availability of specialized oncology service, covering the whole population, and the state cancer registration system that exists in the country since 1932. Today, the specialized oncological care is carried out in 46 oncology centres of different levels of subordination, including 25 oblast oncological dispensaries, which perform registration of all cancer cases and dispensary follow-up of cancer patients resident in the oblast (a territorial administrative unit in Ukraine) served by the dispensary.
According to the state cancer registration system a physician of any medical institution having identified new case of cancer or suspected cancer must complete a signal form “Notification about a patient with cancer or other malignant neoplasm diagnosed for the first time” (Form № 090/o) and send it during a 3-day period to the oblast oncological dispensary at the place of residence of the patient. In the oncological dispensary the notifications are verified, the patient may be invited to medical examination. Upon confirmation of cancer diagnosis the “Registration card of patient with malignant tumour” (Form № 030-6/o) is filled. Further this card is supplemented with information about treatment and follow-up of the patient. Also the registration card may be filled in based on the information from “Extract from medical record of inpatient with malignant tumour” (Form № 027‑1/o) that should be sent during 10 days from the medical institution that carried out the treatment of the patient to the oblast oncological dispensary serving the place of residence of the patient, or on the basis of information about death from cancer from the Civil Registry Bureau. Such a system provides, on the one hand, information about diagnosed cancer cases on a national scale and, on the other hand, further dispensary follow-up, updating and accumulating data on cancer patients.
National Cancer Registry of Ukraine
Until recently, all the information about cancer patients has been recorded on paper. In 1989, the Ukrainian Research Institute of Oncology and Radiology (now the National Cancer Institute) began development and implementation of software-and-information system of cancer registration to transform it into modern information level. This system is equipped with multi-level data check procedures and automated data linkage for eliminating of duplicate records which greatly improved the quality of data collected. In addition to the calculations of statistical tables of state report, many other calculations and search operations necessary for assessing various aspects of population and clinical epidemiology that were unimaginable in paper technology has become possible.
The Order № 10 of the Ministry of Health of Ukraine on January 2, 1996 approved the establishment of the National Cancer Registry of Ukraine (NCR) and the transition to automated technology of cancer registration, thereby creating the conditions for a common information environment in oncology. Software-and-information technology of NCR was implemented in all oblast and many of city and regional oncological dispensaries (territorial, or regional population-based cancer registries). Along with it, technology of hospital cancer registry which is compatible on the information and software level with technology of NCR was also designed and implemented in many oncological institutions of Ukraine. Hospital cancer registry is one of the main suppliers of data for the population registry as 90% of cancer patients are examined and receive treatment in oncological medical institution serving their place of residence, and automated data transfer from the hospital to the population registry significantly reduces complexity of maintaining the population-based registry and improves the quality of its data.
Nowadays, the NCR is a network of regional cancer registries with the central element in the Department of Cancer Epidemiology with National Cancer Registry of the National Cancer Institute of Ukraine. United NCR database contains more than 3 million records of cases of cancer diseases in Ukraine. These data are the basis for monitoring of cancer incidence and mortality in the country, analysis of the oncology service activity, scientific research, etc. All personalized databases are protected under the Law of Ukraine “On Personal Data Protection”.
The distinctive features of the National Cancer Registry of Ukraine are:
– presence of a specialized cancer service which covers the entire population of Ukraine and has many years of experience in accumulation and processing of data on cancer cases;
– presence of central institution which coordinates and does scientific and methodical management of the regional cancer registries, develops and maintains the unified information ware and software;
– possibility to perform both distributed and centralized data analysis and conduct cooperative research;
– information-and-software technology with advanced means for data check, data linkage, protection from duplicate records, calculation of various statistical rates, etc. which complied with actual technical and human resource in health branch;
– data exchange between hospital and regional cancer registries, which serves conducting cooperative research and survival analysis;
– use of international classifications, advanced data quality check that meets international requirements and recommendations of the WHO, the International Agency for Research on Cancer (IARC), the International Association of Cancer Registry (IACR), the European Network of Cancer Registry (ENCR) on cancer registration – all these features ensure reliable comparing of onco-epidemiological rates within Ukraine and with other countries;
– publication of summarized statistics in annual Bulletin of NCR “Cancer in Ukraine” with its placement on the NCR website http://www.ncru.inf.ua.
– use of the accumulated data for solving the organizational and management tasks, evaluation of cancer service activity, planning in health branch, large-scale research;
– providing of de-personified information into the international studies, including the online IARC publication “Cancer Incidence on Five Continents» (http://ci5.iarc.fr/CI5I-X/Default.aspx).
Areas of research activity:
– conducts research on cancer epidemiology and cancer care organization;
– performs constant monitoring of cancer incidence and mortality in Ukraine on the basis of personalized data of National Cancer Registry; develops forecasts of cancer extent in Ukrainian population; defines priorities in cancer control activity and provides scientific and methodical management for the network of regional cancer registries;
– annually publishes scientific analytical issue “Bulletin of National Cancer Registry of Ukraine” (http://www.ncru.inf.ua/publications/index.htm) which presents level of cancer burden and state of cancer care in Ukraine, that served for the Ministry of Health of Ukraine, the Ukrainian Academy of Medical Sciences, departments of oncology of medical schools and oncological institutions of Ukraine for use in research and pedagogical process and ongoing cancer control activity;
– introduces modern information technologies in research to evaluate effectiveness of cancer treatment by survival rates, as well as in public health practice to appraise the oncology centres activity;
– participates in research within the framework of government and branch programs and in organization and conducting of scientific forums on oncology and medical statistics;
– cooperates with the International Agency for Research on Cancer (IARC), the International and the European Associations of Cancer Registries on cancer epidemiology and cancer registration;
– submits materials to the international IARC edition “Cancer on Five Continents” (Ukraine summarizes http://ci5.iarc.fr/CI5-X/PDF/Europe/58040099.pdf; online analysis http://ci5.iarc.fr/CI5I-X/Pages/online.aspx).
– provides analytical and software support of National Cancer Registry, carries out scientific and methodological guidance for the network of regional cancer registries, evaluates the quality of cancer information and makes recommendations for its improvement;
– co-operates with the Ministry of Health of Ukraine, the Centre of Medical Statistics of the Ministry of Health of Ukraine concerning the organization of cancer care and improvement of registration of cancer patients; participates in the development of regulations on the specified questions;
– conducts scientific workshops and meetings of regional cancer registries to discuss the onco-epidemiological process in Ukraine and its adequate registration in National Cancer Registry database;
– contributes to assembling the materials on cancer epidemiology and cancer control activity for the Ministry of Health of Ukraine;
– improves the qualification of employees of regional cancer registries.