Estonian Cancer Registry (Estonia)

Field Names
Records
Coordinating Country
Estonia
Region

All regions of Estonia

Brief Database Description

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.).

Database Type
Registry
- Specific Disease registry

(Cancer Patient Registry)

Database Source
Medical Records

[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]

Frequency of Data Collection
Ongoing
Frequency of Data Update
Annually

(By incidence year)

Years Covered
1968 - Present

(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)

Population Type
General Population

(Those diagnosed with cancer)

Patient Type
Inpatient and Outpatient
Date of Last Update

(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.)

Field Names
Records
Database Population Size
<0.5 Million
Active Population Size
N/A

(Not applicable)

Annual Change in Population
~9,000

(There are roughly 9,000 new cancer cases per year)

Sample Weights - Extrapolation Factors
N/A

(Not applicable)

Final Population Size
N/A

(Not applicable; data collection is still ongoing)

Field Names
Records
Age of Patients at Data Collection
Yes

(DOB)

Approximate Percentage of Participants <18 years and those >65 years

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)

Gender Data
Yes
Percentage of Males/Females

Males = 50%
Females = 50%

(For cancer cases for the period 1968 - 2020.)

Ethnicity / Race Data
Yes

Nationality is recorded

Geographic Location

All regions of Estonia

Date of Birth Recorded
Yes

(Date / Month / Year)

Death Recorded
Yes

Date of death is recorded as date/month/year

Availability of death certificate / autopsy information
Yes

Death certificate and autopsy information available

Other Demographic Data
Yes

These include:
- Personal Identification Number (starting 1992),
- First and last name (surname),
- Address,
- Nationality.

Field Names
Records
Physician ID
No
Physician Specialty
No
Pharmacy ID
N/A

(Not applicable)

Field Names
Records
Diagnosis Data
Yes

Included in diagnosis data are:
- Date of diagnosis,
- Topography,
- Morphology and behaviour,
- Diagnostic methods (basis of diagnosis), and
- Extent of disease at diagnosis.

Diagnoses Coded
ICD-O-3
Diagnoses: Date Parameters
1968 - Present

(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)

Diagnoses: Maximum Number of Codes Allowed
N/A

(Not applicable)

Physical Examination Findings
N/A

(Not applicable)

Birth Defect Data
N/A

(Not applicable)

Cancer Data
Yes

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.

Infectious Disease Data
N/A

(Not applicable)

Environmental Exposures
No
Behavioral Data Elements
No
Field Names
Records
Procedure Data
Yes

Cancer treatment data are captured - first course of therapy after diagnosis, i.e., surgery, radiotherapy, chemotherapy, hormonal therapy, or other cancer therapy.

Procedures Coded
Other

(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)

Number of Procedures Coded
Up to 5

(One surgery, one radiotherapy, one chemotherapy, one hormonal therapy, one other therapy)

Procedure Date Parameters
1968 - Present

(The Estonian Cancer Registry was officially founded in 1978, though reliable cancer registration data go back to 1968)

Laboratory Information
Yes

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.

Field Names
Records
Drug Data
No
Drug Date Parameters
N/A

(Not applicable)

Drug Regimen & Route
N/A

(Not applicable)

Drug Manufacturer
N/A

(Not applicable)

Drug Dosage
N/A

(Not applicable)

Drug Days Supply
N/A

(Not applicable)

Drug Coding System: Maximum Number
N/A

(Not applicable)

Drug Coding System: Primary
N/A

(Not applicable)

Drug Coding System: Other
N/A

(Not applicable)

Drug Generic Name
N/A

(Not applicable)

Drug Additional Information
N/A

(Not applicable)

Field Names
Records
Biobank Type
N/A
Human Specimen
N/A
Blood Type
N/A
Biomarkers
N/A
Patient ID
N/A
Number of Samples
N/A
Frequency of Sample Collection
N/A
Pre-diagnostic Sample Collection
N/A
Post-treatment Sample Collection
N/A
Method of Sample Collection
N/A
Age at Sample Collection
N/A
Date of Sample Collection
N/A
Reason for Sample Collection
N/A
Method of Sample Storage
N/A
Length of Sample Storage
N/A
Pathology
N/A
DNA Isolation
N/A
RNA Isolation
N/A
Cell Culture
N/A
Genetic Testing
N/A
Access for Research: Specimens
N/A
Access for Research: Genetic Data
N/A
Access for Research: Epidemiologic Data
N/A
Quality Assurance Procedures
N/A
Family History
N/A
Medical History
N/A
Biobank Linkage
N/A
Field Names
Records
Type of Genetic Database
N/A
Source of Genetic Data
N/A
Specimen Genotyped
N/A
Tissue Form
N/A
Genetic Template
N/A
Gene-Drug Response
N/A
Gene-Disease Relationship
N/A
Gene-Health Outcome Relationship
N/A
Gene-Environment Response
N/A
Method of Imputing Genetic Data
N/A
Genetic Variant Identification
N/A
Genetic Data Level
N/A
Genotyping Method
N/A
Method of Genetic Variant Filtering
N/A
Haplotypes
N/A
Haplogroups
N/A
Variable Number of Tandem Repeats (VNTR)
N/A
Single Nucleotide Polymorphisms (SNPs)
N/A
Variant Type
N/A
Variant Class
N/A
Mutation Indicated
N/A
Position
N/A
Amino Acid Change
N/A
Genotype / Polymorphism
N/A
Allele Frequency
N/A
Linkage Disequilibrium (r²)
N/A
Noncarriers Indicated
N/A
Association Statistics
N/A
Genetic Relatedness Pairing
N/A
Data Sharing: Genetic Data
N/A
Access for Research
N/A
Genetic Data Linkage
N/A
Description of Genetic Data Linkage
N/A
Field Names
Records
Cost Data
No
Cost Denomination
N/A

(Not applicable)

Type of Cost Data
N/A

(Not applicable)

Surrogate Cost Data Link
No
Description of Surrogate Link
N/A

(Not applicable)

Field Names
Records
Data Validation Against Original Source
Yes

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).

Access to Medical Records
No
Linkage to Other Databases
Yes

Data are linked to other databases; however, there are no OMOP conversion capabilities.

Brief Description of Linkage Capabilities

The Estonian Cancer Registry's data are linked with death certificate data (Estonian Causes of Death Registry) and also with Population Registry

Field Names
Records
Database Contact Data

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

Website
https://www.tai.ee/et/statistika-ja-registrid/vahiregister

(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/.)

Alternate Contact

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

Source of Database Funding
Government
Sponsoring Government Agency
Ministry of Social Affairs
Sponsoring Pharmaceutical Manufacturer

N/A

(Not applicable)

Database Usage Restrictions
Private Access

(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.)

Charge for Database Usage
No
Data Media Format
Excel / CSV

(By agreement, but generally Excel or CSV. Please note that direct access to the registry's database is only for the registry staff.)

Number of Publications Using Database
>10
References of Studies Using/Describing Database

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
Database Contact Data

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

Alternate Contact

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

References of Studies Using/Describing Database

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.