National Cancer Institute’s Cancer registry is a nationwide and population-based cancer registry, which covers all territory of Lithuania and it collects information about all new cancer cases (ICD-10-AM codes: C00-C96, D00-D09, D32-D33, D39.1, D42-D43, D45-D47) of all cancer patients.
The main task of the Cancer Registry is to guarantee as complete and reliable registration of incident cancer cases as possible.
Registration of malignant tumors in our country started in 1957. The Department of Epidemiology of the Institute of Oncology was responsible for the collection of cancer incidence data. However, only in 1984 the Lithuanian Cancer Registry was established at this Institute by the Order of the Minister of Health. The population-based Cancer Registry was set up in 1990. Cancer registry have had some legislative issues for few years, but Government of Lithuania approved all regulations covering the registry’s activities on August 11 in 2016. From first of January 2017 Cancer Registry has had the legal basis for all information from all hospitals in Lithuania, for information from pathological centers, for periodical linkages with death registry and with Central Population Registry for information about vital status or date of emigration.
The registry operates as a department of the National Cancer Institute. Today its staff includes a medical doctor, two programmers and two registry clerks.
The principal sources of information are primary, secondary and tertiary health care institutions in the country. All physicians, all hospitals and other institutions must send a notification to Lithuanian Cancer Registry of all cancer cases that come to their attention. The cancer notifications submitted to the Cancer Registry are immediately stored to the database. Some pathological laboratories voluntary send the respective laboratory notifications in digital records form, which were automatically extracted from laboratory data systems.
Today, in database Cancer Registry has information about all cancers diagnosed since 1978. Information about mortality is available since 1990. Cancer Registry has full information about cancer incidence, mortality, prevalence and survival in Lithuania.
Earlier all notifications were in paper form, but now we get about 50 percent of all notifications in electronic record forms. All doctors at National cancer institute fill electronic notifications in their computers and registry clerks immediately can see this notification and can store them to system.
Cancer Registry collects this data about cancer:
All cancer patients are followed up to their death. The Cancer Registry regularly performs data linkage with the Lithuanian Causes of Death Registry (date of death, the main reason of death as text and as ICD-10 code, other additional fields from death certificate).
Annual registry reports on cancer incidence and mortality have been published since 1994.
Lithuanian Cancer Registry is a member ofInternational Association of Cancer Registries and European Network of Cancer registries.
The distinctive features of the Cancer Registry are: