Danish Cancer Registry (Denmark)

Field Names
Records
Coordinating Country
Denmark
Region

Denmark

(The kingdom of Denmark - excluding Greenland and the Faroe Isles - covers 43,080 square kilometers between 55 and 58 degrees north and 8 and 12.5 degrees east. The population of Denmark is over 5.8 million.)

Brief Database Description

The Danish Cancer Registry is a population-based registry containing data on the incidence of cancer throughout Denmark since 1943. Voluntary cancer reporting on a nationwide basis was initiated in Denmark in 1943; since 1987, however, reporting of malignant diseases to the Danish Cancer Registry has been mandatory.

The Danish Cancer Registry receives notifications through ongoing linkage to the National Registry of Pathology and the National Hospital Patient Registry, which receives information from all clinical hospital departments, and through electronic linkage to practising physicians as well as linkage to the Danish Death Certificate Registry. This information is supplemented with personal data from the central population register.

Individuals are identified by their 10-digit personal identification number, which indicates date of birth and gender and has been assigned to all Danish residents since April 1, 1968. A core data set is kept on each individual which includes date of birth, sex, date of cancer diagnosis, method of verification, date of death and cause of death.  

The register also contains cancer-specific information on:
    * Diagnosis of illness
    * The anatomical localization
    * What type (histology) in the case of, and tumor stage
    * Disease spread within the first four months after diagnosis
    * Method of diagnosis

Details of individual cases of cancer are available according to ICD-O-3 and ICD-10 since 1978; for the years 1943 to 1977 they were earlier coded using ICD-7, but since then many have been recoded using ICD-10. There are a total of 2.4 Million cancer records, but the database also includes dysplasias, carcinomas, etc. that are not considered incident cases yet and are therefore not published in incidence statistics.

Database Type
Registry
- Specific Disease registry

(All new cases of cancers in Denmark)

Database Source
EHR/EMR
Death Certificates

(The Danish Cancer Registry receives notifications through ongoing linkage to the National Registry of Pathology and the National Hospital Patient Registry, which receives information from all clinical hospital departments, and through electronic linkage to practicing physicians as well as linkage to the Danish Death Certificate Registry. This information is supplemented with personal data from the central population register.)

Frequency of Data Collection
Ongoing
Frequency of Data Update
Ongoing

(Weekly)

Years Covered
1943 - Present

Voluntary cancer reporting on a nationwide basis was initiated in Denmark in 1943; since 1987, however, reporting of malignant diseases to the Danish Cancer Registry has been mandatory.

Population Type
General Population

(Patients with cancer only)

Patient Type
Inpatient and Outpatient
Date of Last Update
Ongoing

(The Danish Cancer Registry is updated on an ongoing basis;
This profile was last updated for the B.R.I.D.G.E. TO DATA site on March 3, 2022.)

Field Names
Records
Database Population Size
1 - 5 Million

There are a total of 2.4 Million cancer records, but the database also includes dysplasias, carcinomas, etc. that are not considered incident cases yet and are therefore not published in incidence statistics.

Active Population Size
<0.5 Million

There were 362,535 persons with one or more registered diagnoses alive per December 31, 2020.

Annual Change in Population
Varies

The incidence for each year is added to the cumulative total number of persons in the database. In 2020 alone, there were 45,205 new incident cases added.

Sample Weights - Extrapolation Factors
No

Only an age-adjustment is made in comparative publications

Final Population Size
N/A

(Not applicable, as the dataset is not closed)

Field Names
Records
Age of Patients at Data Collection
Yes

(At diagnosis time)

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

N/A

(Not applicable)

Gender Data
Yes
Percentage of Males/Females

Males = 45%
Females = 55%

(Data are from 2020)

Ethnicity / Race Data
No
Geographic Location

Denmark

(Region, Municipality, and County Code are recorded)

Date of Birth Recorded
Yes
Death Recorded
Yes

(Status: Dead, Alive; Date of death)

Availability of death certificate / autopsy information
Yes, death certificate and autopsy information are available

Clinical reports are also available

Other Demographic Data
Yes

Marital status and job title are available though only until 1967

Field Names
Records
Physician ID
No

However, physician affiliation to hospital and department are obtainable through linkage to other data registers.

Physician Specialty
No
Pharmacy ID
No
Field Names
Records
Diagnosis Data
Yes

The tumour diagnosis, given as topography and morphology, is requested in clear text - cancer diagnosis, TNM stage, Ann Arbor stage, morphology, tumor serial, sarcoma or not, method of diagnosis, tumor location, grading (only for urinary tract tumors), and metastasis to other organs. For certain cancers more detailed staging, such as FIG0 for gynaecological tumours, may be indicated in clear text. The basis of the diagnosis is indicated by ticking boxes for histology, bone marrow examination, cytology, surgery without histology, other specified, clinical alone and incidental autopsy finding.

Date of diagnosis is taken as month and year of first admission or first outpatient visit for the malignant disease.

Diagnoses Coded
ICD-10
ICD-7
ICD-O-3
ICD-O-2
ICD-O-1
TNM classification of tumors

(Details of individual cases of cancer are available according to:

Diagnostic:
ICD-7 (1943-1977)
ICD-10 (1978-Current; 1978-2003- based on a conversion)

Morphology:
ICD-O-1 (1943-1977)
ICD-O-2 (1978-2003; these years are now only available in ICD-O-3 (converted)
ICD-O-3 (2004-Current)

Histology:
TNM classification of tumors (2004-Current))

Diagnoses: Date Parameters
1943 - Present

Voluntary cancer reporting on a nationwide basis was initiated in Denmark in 1943; since 1987, however, reporting of malignant diseases to the Danish Cancer Registry has been mandatory.

Diagnoses: Maximum Number of Codes Allowed
Unlimited
Physical Examination Findings
No
Birth Defect Data
No

However, some cases may be available via linkage to the National Hospital Patient Register

Cancer Data
Yes

The tumour diagnosis, given as topography and morphology, is requested in clear text - cancer diagnosis, TNM stage, Ann Arbor stage, morphology, tumor serial, sarcoma or not, method of diagnosis, tumor location, grading (only for urinary tract tumors), and metastasis to other organs. For certain cancers more detailed staging, such as FIG0 for gynaecological tumours, may be indicated in clear text. The basis of the diagnosis is indicated by ticking boxes for histology, bone marrow examination, cytology, surgery without histology, other specified, clinical alone and incidental autopsy finding.

Date of diagnosis is taken as month and year of first admission or first outpatient visit for the malignant disease.

Infectious Disease Data
No

However, some cases may be available via linkage to the Danish National Hospital Patient Register (NHPR)

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

(Only regarding cancer pathology and method of cancer diagnosis. However, all procedure-related information can be retrieved via linkage to the Danish National Hospital Patient Registry (NHPR).)

Procedures Coded
Other

(Procedures are coded in the National Board of Health Coding System, SKS.

Currently, the Danish Cancer Registry only collects data on diagnostic procedures; treatment-related procedure data were collected uptil 2003. Prior to 2003, data included: Surgery done, Date of surgery, Purpose of surgery (e.g., diagnostic, palliative or attempted radical). However, procedure data can be retrieved through linkage to the Danish National Hospital Patient Registry (NHPR).)

Number of Procedures Coded
Unlimited

However, this information is only available via linkage to the Danish National Hospital Patient Register (NHPR)

Procedure Date Parameters
1943 - 2003

(Only diagnostic procedures are recorded; treatment data (including treatment-related procedures) were only collected uptil 2003. However, all procedure-related information can be retrieved via linkage to the Danish National Hospital Patient Registry (NHPR).)

Laboratory Information
Yes

Histology and Pathology results; the basis of the diagnosis is indicated by ticking boxes for histology, bone marrow examination, cytology, surgery without histology, other specified, clinical alone and incidental autopsy finding.

Field Names
Records
Drug Data
Yes

Drug data are only available for cancer treatment for cases recorded from 1943 to 2003.

Treatment information recorded only for primary treatment, i.e., given within the first four months, for tumor or metastasis. Type of treatment given is indicated (as radiotherapy, cytotoxic treatment, or hormone treatment) without further details. Date of start of treatment is requested. Furthermore, it is possible to tick 'no treatment given' or 'other treatment', and to specify this in clear text. The ticking of boxes is cross-checked against the information otherwise stated on the form, such as histological diagnosis, surgical procedures and autopsy result.

Drug Date Parameters
1943 - 2003

NOTE: Drug data are no longer being collected

Drug Regimen & Route
No
Drug Manufacturer
No
Drug Dosage
No
Drug Days Supply
No
Drug Coding System: Maximum Number
No
Drug Coding System: Primary
N/A

(Not applicable)

Drug Coding System: Other
N/A

(Not applicable)

Drug Generic Name
No
Drug Additional Information
No
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)

Description of Surrogate Link
N/A

(Not applicable)

Field Names
Records
Data Validation Against Original Source
Yes

Diagnosis is validated by pathology and medical records; if not enough, the diagnosing hospital department is contacted. Validation is also done for sex-specific cancers and patient's sex.

Access to Medical Records
Yes

However, these are accessible only for people working with the Danish Cancer Registry

Linkage to Other Databases
Yes
Brief Description of Linkage Capabilities

Cancer cases can be identified by weekly linkage to the National Hospital Patient Registry and the National Register og Pathology.

Linkage to the Danish Death Certificate Registry and the Civil Registration System provides additional data, as well as information on the time and cause of death. 

The personal identification number of each cancer patient notified is cross-checked with the Civil Registration System to avoid erroneous identification. The Registry is not routinely linked to reference databases, but have been validated against other disease specific databases.

Field Names
Records
Database Contact Data

Milan Fajber
Cancerregistry
The Danish Health Data Authority
Ørestads Boulevard 5
2300 København S
DENMARK
Email: mifa@sundhedsdata.dk

Alternate Contact

Henrik Mulvad Hansen 
Head of Section
The Danish Health Data Authority
Ørestads Boulevard 5
2300 København S
DENMARK
Email: HEMH@sundhedsdata.dk  

Source of Database Funding
Government
Sponsoring Government Agency
The registry is funded AND operated by The Danish Health Data Authority
Sponsoring Pharmaceutical Manufacturer

N/A

(Not applicable)

Database Usage Restrictions
Public & Private Access

[Annual reports of aggregate data are publicly available free of charge. Aggregated data are available on Sundhedsdata.dk (possible to make different requests on sex, region, age groups and disease).

Access to database is restricted to research sanctioned by Danish Data Protection Agency (DDPA).]

Charge for Database Usage
Yes

Research is sanctioned by DDPA; detailed description is needed. Cost and delivery dates vary; please contact database manager for more details.

Data Media Format
PDF Files
SAS / SPSS
Excel / CSV

Data may be delivered in other formats too.

Data are just numbers, so are language-free.

It is possible for researchers to even query data themselves directly, upon security approvals.

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

1. Urbute A, Munk C, Sand FL, Belmonte F, Kjaer SK. Trends in incidence and survival from anal cancer and incidence of high-grade anal intraepithelial neoplasia in Denmark. Cancer epidemiology. 2022 Apr 1;77:102099.

2. de la Cour CD, von Buchwald C, Dehlendorff C, Garset‐Zamani M, Grønhøj C, Carlander AL, Friis S, Kjaer SK. Low‐dose aspirin use and mortality risk in patients with head and neck cancer: A nationwide cohort study of 10 770 patients. International Journal of Cancer. 2022 Mar 15;150(6):969-75.

3. Skovlund CW, Friis S, Christensen J, Nilbert MC, Mørch LS. Drop in cancer diagnosis during the COVID-19 pandemic in Denmark: assessment of impact during 2020. Acta Oncologica. 2022 Jan 11:1-4.

4. Tybjerg AJ, Friis S, Brown K, Nilbert MC, Morch L, Køster B. Updated fraction of cancer attributable to lifestyle and environmental factors in Denmark in 2018. Scientific Reports. 2022 Jan 11;12(1):1-1.

5. Faber MT, Horsbøl TA, Baandrup L, Dalton SO, Kjaer SK. Trends in survival of epithelial ovarian/tubal cancer by histology and socioeconomic status in Denmark 1996–2017. Gynecologic Oncology. 2022 Jan 1;164(1):98-104.

6. Mellemkjær L, Eibye S, Albieri V, Kjær SK, Boice JD. Pregnancy-associated cancer and the risk of second primary cancer. Cancer Causes & Control. 2022 Jan;33(1):63-71.

7. Dalsgaard SB, Würtz ET, Hansen J, Røe OD, Omland Ø. Cancer Incidence and Risk of Multiple Cancers after Environmental Asbestos Exposure in Childhood—A Long-Term Register-Based Cohort Study. International Journal of Environmental Research and Public Health. 2022 Jan;19(1):268.

8. Elser H, Skajaa N, Ehrenstein V, Fuglsang CH, Farkas DK, Sørensen HT. Cancer risk in patients with migraine: A population‐based cohort study in Denmark. Headache: The Journal of Head and Face Pain. 2022 Jan;62(1):57-64.

9. Damhus CS, Siersma V, Birkmose AR, Dalton SO, Brodersen J. Use and diagnostic outcomes of cancer patient pathways in Denmark–is the place of initial diagnostic work-up an important factor?. BMC health services research. 2022;22(1):1-2.

10. Sørensen HT, Skajaa N, Klok FA, Laugesen K, Farkas DK. Cancer Risk in Pulmonary Hypertension Patients. Clinical Epidemiology. 2022;14:173.

    Database Contact
    Database Contact Data

    Milan Fajber
    Cancerregistry
    The Danish Health Data Authority
    Ørestads Boulevard 5
    2300 København S
    DENMARK
    Email: mifa@sundhedsdata.dk

    Alternate Contact

    Henrik Mulvad Hansen 
    Head of Section
    The Danish Health Data Authority
    Ørestads Boulevard 5
    2300 København S
    DENMARK
    Email: HEMH@sundhedsdata.dk  

    References of Studies Using/Describing Database

    1. Urbute A, Munk C, Sand FL, Belmonte F, Kjaer SK. Trends in incidence and survival from anal cancer and incidence of high-grade anal intraepithelial neoplasia in Denmark. Cancer epidemiology. 2022 Apr 1;77:102099.

    2. de la Cour CD, von Buchwald C, Dehlendorff C, Garset‐Zamani M, Grønhøj C, Carlander AL, Friis S, Kjaer SK. Low‐dose aspirin use and mortality risk in patients with head and neck cancer: A nationwide cohort study of 10 770 patients. International Journal of Cancer. 2022 Mar 15;150(6):969-75.

    3. Skovlund CW, Friis S, Christensen J, Nilbert MC, Mørch LS. Drop in cancer diagnosis during the COVID-19 pandemic in Denmark: assessment of impact during 2020. Acta Oncologica. 2022 Jan 11:1-4.

    4. Tybjerg AJ, Friis S, Brown K, Nilbert MC, Morch L, Køster B. Updated fraction of cancer attributable to lifestyle and environmental factors in Denmark in 2018. Scientific Reports. 2022 Jan 11;12(1):1-1.

    5. Faber MT, Horsbøl TA, Baandrup L, Dalton SO, Kjaer SK. Trends in survival of epithelial ovarian/tubal cancer by histology and socioeconomic status in Denmark 1996–2017. Gynecologic Oncology. 2022 Jan 1;164(1):98-104.

    6. Mellemkjær L, Eibye S, Albieri V, Kjær SK, Boice JD. Pregnancy-associated cancer and the risk of second primary cancer. Cancer Causes & Control. 2022 Jan;33(1):63-71.

    7. Dalsgaard SB, Würtz ET, Hansen J, Røe OD, Omland Ø. Cancer Incidence and Risk of Multiple Cancers after Environmental Asbestos Exposure in Childhood—A Long-Term Register-Based Cohort Study. International Journal of Environmental Research and Public Health. 2022 Jan;19(1):268.

    8. Elser H, Skajaa N, Ehrenstein V, Fuglsang CH, Farkas DK, Sørensen HT. Cancer risk in patients with migraine: A population‐based cohort study in Denmark. Headache: The Journal of Head and Face Pain. 2022 Jan;62(1):57-64.

    9. Damhus CS, Siersma V, Birkmose AR, Dalton SO, Brodersen J. Use and diagnostic outcomes of cancer patient pathways in Denmark–is the place of initial diagnostic work-up an important factor?. BMC health services research. 2022;22(1):1-2.

    10. Sørensen HT, Skajaa N, Klok FA, Laugesen K, Farkas DK. Cancer Risk in Pulmonary Hypertension Patients. Clinical Epidemiology. 2022;14:173.