Summary
All regions of Estonia
The Estonian Cancer Registry was officially founded in 1978, though reliable incidence data are available since 1968. Reporting is compulsory, and the registry covers the whole of Estonia. Notifications on malignant neoplasms, in situ neoplasms (starting 1994), and neoplasms of benign and uncertain behaviour of brain and the central nervous system (starting 1998) are received from treating physicians and pathological and hematological laboratories.
The registry collects diagnosis and treatment data, as well as personal data and some demographic data on patients. It has information on < 0.5 million cancer patients. The cancer patients are followed up to death or emigration. The registry receives death certificate data and performs trace-back procedure for cases first notified by a death certificate. The registry also performs regular linkage with the Population Registry.
The ICD-O classification (ICD-O-3 since 2008) is used for coding diagnosis. The coding and input is carried out by the registry’s staff. In addition to internally developed logical and visual checks for the data, the registry uses consistency-check software recommended by the International Agency for Research on Cancer (IARC).
The Estonian Cancer Registry routinely produces cancer incidence statistics. Estonian cancer data have been used for a number of epidemiological studies, including international comparisons (Cancer Incidence in Five Continents, International Incidence of Childhood Cancer, EUROCARE, etc.).
(Cancer Patient Registry)
[Notifications on malignant neoplasms, in situ neoplasms (starting 1994), and non-malignant neoplasms of the central nervous system (starting 1998) are received from treating physicians and pathological and hematological laboratories]
(By incidence year)
(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)
(Those diagnosed with cancer)
(The Estonian Cancer Registry was last updated on December 8, 2022 with incidence data from 1968 to 2020;
This profile was last updated for the B.R.I.D.G.E. TO DATA site on April 13, 2023.)
Population Dynamics
(Not applicable)
(There are roughly 9,000 new cancer cases per year)
(Not applicable)
(Not applicable; data collection is still ongoing)
Demographic Data
(DOB)
For 2001 - 2010:
< 18 years = 1%
> 65 years = 61%
For 2011 - 2020:
< 18 years = 1%
> 65 years = 64%
(The average distribution of age at diagnosis for cancer cases from 1968 to 2020)
Males = 50%
Females = 50%
(For cancer cases for the period 1968 - 2020.)
Nationality is recorded
All regions of Estonia
(Date / Month / Year)
Date of death is recorded as date/month/year
Death certificate and autopsy information available
These include:
- Personal Identification Number (starting 1992),
- First and last name (surname),
- Address,
- Nationality.
Physician & Practioner Info
(Not applicable)
Diagnoses/Signs & Symptoms
Included in diagnosis data are:
- Date of diagnosis,
- Topography,
- Morphology and behaviour,
- Diagnostic methods (basis of diagnosis), and
- Extent of disease at diagnosis.
(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)
(Not applicable)
(Not applicable)
(Not applicable)
This registry collects:
- Cancer Diagnosis data (date, topography, morphology and behaviour, diagnostic methods, extent of disease at diagnosis), and
- Cancer Treatment data (first course of therapy after diagnosis - surgery, radiotherapy, chemotherapy, hormonal therapy, other cancer therapy), and
- Follow-up Data for vital status.
NOTE: There are no data on HER2 or other biomarkers.
(Not applicable)
Procedures
Cancer treatment data are captured - first course of therapy after diagnosis, i.e., surgery, radiotherapy, chemotherapy, hormonal therapy, or other cancer therapy.
(Treatment data are coded as follows:
1. Surgery
0 - No surgery
1 - Curative, performed within 0–4 month after diagnosis
2 - Palliative, performed within 0–4 months after diagnosis
3 - Unknown whether curative or palliative, performed within 0–4 months after diagnosis
4 - Curative, performed later than 4 months after diagnosis
5 - Palliative, performed later than 4 months after diagnosis
6 - Unknown whether curative or palliative, performed later than 4 months after diagnosis
7 - Curative, date unknown
8 - Palliative, date unknown
9 - Unknown whether surgery is performed
2. Radiotherapy
Same as surgery
3. Chemotherapy
0 - No chemotherapy
1 - Started within 0-4 months after diagnosis
4 - Started later than 4 months after diagnosis
7 - Received chemotherapy, date unknown
9 - Unknown whether received chemotherapy
4. Hormonal therapy
Same as chemotherapy
5. Other cancer therapy
Same as chemotherapy)
(One surgery, one radiotherapy, one chemotherapy, one hormonal therapy, one other therapy)
(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)
Only basis of diagnosis, i.e., which diagnostic methods confirm the diagnosis:
- Clinical,
- Clinical investigation,
- Surgery without histopathological examination,
- Specific tumour markers,
- Cytology or hematology,
- Histology of metastasis,
- Histology of primary tumour,
- Autopsy (with or without histological examination), and
- Morphology.
Drug Information
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
(Not applicable)
Biobanks
Genetic-PGx Data
Economic Data
(Not applicable)
(Not applicable)
(Not applicable)
Validation & Linkage
The registry receives death certificate data and performs trace-back procedure for cases first notified by a death certificate.
In addition, the Estonian Cancer Registry uses consistency-check software recommended by the International Agency for Research on Cancer (IARC).
Data are linked to other databases; however, there are no OMOP conversion capabilities.
The Estonian Cancer Registry's data are linked with death certificate data (Estonian Causes of Death Registry) and also with Population Registry
Administrative Information
Dr. Margit Mägi
Estonian Cancer Registry
National Institute for Health Development
Hiiu 42
11619 Tallinn
ESTONIA
Tel: +372 659 3830
Fax: +372 659 3901
Email: margit.magi@tai.ee
(As a member of the International Association of Cancer Registries some information from the Estonian Cancer Registry is available on their website as well, at http://www.iacr.com.fr/.)
Ms. Mari-Liis Zimmermann
Estonian Cancer Registry
National Institute for Health Development
Hiiu 42
11619 Tallinn
ESTONIA
Tel: +372 659 3831
Fax: +372 659 3901
Email: mari-liis.zimmermann@tai.ee
N/A
(Not applicable)
(Access to database is restricted; identifiable data are released for research only if the request is granted by the Ethical Committee and controller of registry, i.e., National Institute for Health Development.
Data are available in Estonian or English.)
(By agreement, but generally Excel or CSV. Please note that direct access to the registry's database is only for the registry staff.)
1. Innos K, Paapsi K, Alas I, Baum P, Kivi M, Kovtun M, Okas R, Pokker H, Rajevskaja O, Rautio A, Saretok M, Valk E, Žarkovski M, Denissov G, Lang K. Evidence of overestimating prostate cancer mortality in Estonia: a population-based study. Scand J Urol. 2022 Oct-Dec;56(5-6):359-364.
2. Sant M, Magri MC, Maurichi A, Lillini R, Bento MJ, Ardanaz E, Guevara M, Innos K, Marcos-Gragera R, Rubio-Casadevall J, Sánchez Pérez MJ, Tumino R, Rugge M, Minicozzi P, The Melanoma Hr Study Working Group. Association of Sentinel Node Biopsy and Pathological Report Completeness with Survival Benefit for Cutaneous Melanoma and Factors Influencing Their Different Uses in European Populations. Cancers (Basel). 2022 Sep 8;14(18):4379.
3. Orumaa M, Innos K, Suurna M, Salumäe L, Veerus P. Quality Assessment of Cervical Cytology Practices in Estonia From 2007 to 2018. Cancer Control. 2022 Jan-Dec;29:10732748221141794.
4. Huang L, Jansen L, Verhoeven RHA, Ruurda JP, Van Eycken L, De Schutter H, Johansson J, Lindblad M, Johannesen TB, Zadnik V, Žagar T, Mägi M, Lagarde SM, Bastiaannet E, van de Velde CJH, Schrotz-King P, Brenner H. Largely varying patterns and trends of primary cancer-directed resection for gastric carcinoma with synchronous distant metastasis in Europe and the US: a population-based study calling for further standardization of care. Ther Adv Med Oncol. 2021 Jun 28;13:17588359211027837.
5. Shahrabi Farahani F, Paapsi K, Innos K. The impact of sociodemographic factors on the utilization of radiation therapy in breast cancer patients in Estonia: a register-based study. Int J Equity Health. 2021 Jun 30;20(1):152.
6. Kase S, Baburin A, Kuddu M, Innos K. Incidence and Survival for Head and Neck Cancers in Estonia, 1996–2016: A Population-Based Study. Clinical Epidemiology 2021;13,149−159.
7. Paapsi K, Baburin A, Mikkel S, Mägi M, Saks K, Innos K. Childhood cancer incidence and survival trends in Estonia (1970–2016): a nationwide population-based study. BMC Cancer 2020;20(1):30.
8. Jürgens H, Ojamaa K, Pokker H, Innos K, et al. Changes in therapy and survival of metastatic renal cell carcinoma in Estonia. BMC Cancer 2020;20(1):201.
9. Innos K, Oselin K, Laisaar T, Aareleid T. Patterns of survival and surgical treatment in lung cancer patients in Estonia by histologic type and stage, 1996–2016. Acta Oncol 2019; 58(11):1549−1556.
10. Innos K, Sepp T, Baburin A, Kotsar A, Lang K, Padrik P, Aareleid T. Increasing kidney cancer incidence and survival in Estonia: role of age and stage. Acta Oncol 2019:58(1):21–28.
Database Contact
Dr. Margit Mägi
Estonian Cancer Registry
National Institute for Health Development
Hiiu 42
11619 Tallinn
ESTONIA
Tel: +372 659 3830
Fax: +372 659 3901
Email: margit.magi@tai.ee
Ms. Mari-Liis Zimmermann
Estonian Cancer Registry
National Institute for Health Development
Hiiu 42
11619 Tallinn
ESTONIA
Tel: +372 659 3831
Fax: +372 659 3901
Email: mari-liis.zimmermann@tai.ee
Literature References
1. Innos K, Paapsi K, Alas I, Baum P, Kivi M, Kovtun M, Okas R, Pokker H, Rajevskaja O, Rautio A, Saretok M, Valk E, Žarkovski M, Denissov G, Lang K. Evidence of overestimating prostate cancer mortality in Estonia: a population-based study. Scand J Urol. 2022 Oct-Dec;56(5-6):359-364.
2. Sant M, Magri MC, Maurichi A, Lillini R, Bento MJ, Ardanaz E, Guevara M, Innos K, Marcos-Gragera R, Rubio-Casadevall J, Sánchez Pérez MJ, Tumino R, Rugge M, Minicozzi P, The Melanoma Hr Study Working Group. Association of Sentinel Node Biopsy and Pathological Report Completeness with Survival Benefit for Cutaneous Melanoma and Factors Influencing Their Different Uses in European Populations. Cancers (Basel). 2022 Sep 8;14(18):4379.
3. Orumaa M, Innos K, Suurna M, Salumäe L, Veerus P. Quality Assessment of Cervical Cytology Practices in Estonia From 2007 to 2018. Cancer Control. 2022 Jan-Dec;29:10732748221141794.
4. Huang L, Jansen L, Verhoeven RHA, Ruurda JP, Van Eycken L, De Schutter H, Johansson J, Lindblad M, Johannesen TB, Zadnik V, Žagar T, Mägi M, Lagarde SM, Bastiaannet E, van de Velde CJH, Schrotz-King P, Brenner H. Largely varying patterns and trends of primary cancer-directed resection for gastric carcinoma with synchronous distant metastasis in Europe and the US: a population-based study calling for further standardization of care. Ther Adv Med Oncol. 2021 Jun 28;13:17588359211027837.
5. Shahrabi Farahani F, Paapsi K, Innos K. The impact of sociodemographic factors on the utilization of radiation therapy in breast cancer patients in Estonia: a register-based study. Int J Equity Health. 2021 Jun 30;20(1):152.
6. Kase S, Baburin A, Kuddu M, Innos K. Incidence and Survival for Head and Neck Cancers in Estonia, 1996–2016: A Population-Based Study. Clinical Epidemiology 2021;13,149−159.
7. Paapsi K, Baburin A, Mikkel S, Mägi M, Saks K, Innos K. Childhood cancer incidence and survival trends in Estonia (1970–2016): a nationwide population-based study. BMC Cancer 2020;20(1):30.
8. Jürgens H, Ojamaa K, Pokker H, Innos K, et al. Changes in therapy and survival of metastatic renal cell carcinoma in Estonia. BMC Cancer 2020;20(1):201.
9. Innos K, Oselin K, Laisaar T, Aareleid T. Patterns of survival and surgical treatment in lung cancer patients in Estonia by histologic type and stage, 1996–2016. Acta Oncol 2019; 58(11):1549−1556.
10. Innos K, Sepp T, Baburin A, Kotsar A, Lang K, Padrik P, Aareleid T. Increasing kidney cancer incidence and survival in Estonia: role of age and stage. Acta Oncol 2019:58(1):21–28.