The main task of the Estonian Cancer Registry is to guarantee as complete and reliable registration of incident cancer cases as possible.
Reporting of cancer cases is compulsory to all physicians working in Estonia who diagnose or treat cancer. Data are submitted to the registry also by forensic pathologists-experts.
The cancer patients are followed up to their death or emigration. The Cancer Registry regularly performs data linkage with the Estonian Population Register (personal data, date of emigration) and Estonian Causes of Death Registry (date and cause of death).
The Cancer Registry also carries out trace-back procedure for cases first notified by a death certificate. Additionally, the Cancer Registry compares its database regularly with the databases of two big hospitals — The North Estonia Medical Centre and Tartu University Hospital.
The Cancer Registry receives clinical notifications from treating physicians and laboratory notification from pathology and haematology laboratories.
Collected data:
- patient name, identification number, gender, date of birth, place of birth, residence, marital status, nationality
- primary site, date of diagnosis, confirmation methods of diagnosis, tumour morphology and grade, extent of disease
- primary treatment (surgery, radiotherapy, cytostatic chemotherapy, hormone therapy, other treatment)
- follow-up data (date of death or emigration) and cause of death
- source of information
The following tumours are to be reported (corresponding ICD-10 code):
- all malignant tumours (C00–C97)
- in situ tumours (D00–D09)
- benign tumours and tumours of uncertain or unknown behaviour of brain and central nervous system as well as of the endocrine organs, located in the area of the brain (D32.0–D33.9, D35.2–D35.4, D42.0–D43.9, D44.3–D44.5)
- other tumours of lymphoid, haematopoietic and related tissue (D45–D47).
The Estonian Cancer Registry was founded in 1978, while reliable incidence data is available since 1968.
From the year 1994 onwards, in situ tumours are to be reported, and, since 1998, also the non-malignant tumours of brain and central nervous system were included among reportable tumours.
International Classification of Diseases for Oncology is used for coding topography and morphology of the tumour. The 3rd Edition (ICD-O-3) is used since 2008.
Issuing and publishing of data:
- the health statistics and health research database of the National Institute for Health Development
- the database of Statistics Estonia
- on the Institute's homepage
- several international cancer statistics databases, for example:
- Cancer Incidence in Five Continents, GLOBOCAN
- European Cancer Observatory (ECO)
- Automated Childhood Cancer Information System (ACCIS)
- International Incidence of Childhood Cancer (IICC)
- European Cancer Registry-based Study on Survival and Care of Cancer Patients (EUROCARE)
- Information Network on Rare Cancers (RARECARENet)
- publications (in English) since 2009
Data quality
The study „Analysis of Quality in Estonian Cancer Registry“ was supported by the European Regional Development Fund in the framework of the program TerVE, which was carried out by Estonian Research Council. The results of the study:
- The validity of Estonian Cancer Registry data in 1995–2008. Eesti Arst 2015 (in Estonian, summary in English)
- Master’s thesis „Completeness of the Estonian Cancer Registry“ (in Estonian, summary in English)
- Master’s thesis „The quality of childhood tumour data in the Estonian Cancer Registry“ (in Estonian, summary in English)
- Age-specific cancer survival in Estonia: recent trends and data quality. Clin Epidemiol 2015
- Sex differences in cancer survival in Estonia: a population-based study. BMC Cancer 2015
- Cancer patient survival in Estonia 1995–2009: time trends and data quality. Cancer Epidemiol 2014
Contact:
Margit Mägi
Head of Registry
Tel: +372 659 3830
E-mail: margit.magi@tai.ee