Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).
https://metadata.kreftregisteret.no/help

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

Yes

Biospecimen access conditions

Patient consent if alive, or exemption from consent if patient is deceased.

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

Yes

Description of data collection

Data holder: Oslo University Hospital and The Norwegian Institute of Public Health
Reporting cancer cases to the CRN is mandatory for all physicians in Norway. Information on cancer is reported directly from hospitals/clinics to the CRN automatically from ICT systems (like pathology reports) or manually by filling out a form (like diagnostic work-up). Data is collected, recorded, and go through quality checks continuously. The CRN have coders specially trained in coding cancers, inluding pathology details, diagnostic work-up, treatment, follow-up, relapses/metastasis et.c. The CRN adheres to rules for coding and registration as defined by IACR (International Association of Cancer Registries), as well as classification rules defined by using ICD-10, SNOMED, Norwegian coding of medical procedures etc.
The CRN has extensive trace back routines and routinely sends reminders to hospitals and clinicians for more information to ensure complete and coherent data.
Data collection from different sources:
- Pathology: Reported automatically from ICT systems to the CRN (continuously)
- Clinical information (diagnostic work-up): Reported manually by the patients' physician
- Systemic anti-cancer treatment: Reported automatically from ICT system to the CRN (quarterly)
- Radiation therapy: Reported annually from each radiation clinic
- Patient reported outcome measures: Reported by patients electronically (some cancers) at baseline and at one year follow up (or other, depending on what is relevant for the specific type of cancer)
- Norwegian population registry (alive/dead, emigration status, address et.c.): Data updated monthly
- Norwegian patient registry (hospital admission and discharge information): Data updated monthly, every four months and yearly).
- Cause of death registry (information on causes of death for cancer patients, and cancer reated deaths): Data updated annually
Please refer to https://www.kreftregisteret.no/globalassets/cancer-in-norway/2021/cin_report.pdf p
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

Event triggering de-registration of a person in the data source

Other

Event triggering de-registration of a person in the data source, other

The only de-registration done, is if the cancer diagnosis is withdrawn (confirmation that the patient did not have cancer). Registration in the CRN is mandatory, with no opt-out for patients.

Event triggering creation of a record in the data source

Information from health care personell about a cancer diagnosis, or information from the cause of death registry that cancer is stated as primary or secondary cause of death.
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

Yes

Linkage description, possible linkage

Linkage uses the Norwegian personal identification number. How the linkage is done and by who depends on the specific project and in some cases the legal requirements for the registry. We (or Helsedataservice) would typically extract the relevant data set, collect the additional data set (from another registry), and link the data using personal identification number. The Cancer Registry will perform the OMOP-mapping and creating the ETL on a case by case basis (reusing ETL whenever possible).

Linked data source 1

Pre linked

Is the data source described created by the linkage of other data sources?

No

Data source, other

All linkage depends on specific rules for each registry or cohort, including patient consent (where applicable).

The CRN can be linked to all national health registries in Norway, such as:
- The Cause of death registry (regular linkage annually)
- Medical birth registry of Norway
- Norwegian Surveillance System for Communicable Diseases (MSIS)
- Norwegian Immunisation Registry (SYSVAK)
- Norwegian Armed Forces Health Registry
- Norwegian Patient Registry (NPR) (regular linkage)
- Norwegian Cardiovascular Disease Registry
- Norwegian Adverse Drug Reaction Registry
- Norwegian Registry for Primary Health Care (KPR)
- Norwegian Prescribed Drug Registry

The CRN can also be linked to other registries and cohorts, after relevant approvals.

For an overview of all health registries in Norway: https://helsedata.no/en/data-sources/?page=1&sort=0

Linkage strategy

Deterministic

Linkage variable

Primarily person identification number. All residents in Norway have a personal identification number from birth or immigration, that uniquely identifies individual residents.

Linkage completeness

We describe completeness as stated by each national health registry. All registries below are national and cover the whole intended population.
- The Cause of death registry contains information on deaths and causes of death in Norway from 1951 until today
- Medical birth registry of Norway contains information from 1967 to the present day about medical conditions during pregnancies, births and newborns in Norway
- Norwegian Surveillance System for Communicable Diseases (MSIS) contains information about infectious diseases in humans in Norway, from 1977 until today.
- Norwegian Immunisation Registry (SYSVAK). From 1976-2009 only child vaccinations. 2011 - 2020 all vaccinations to all groups in Norway (consent). 2020 - today all vaccinations in Norway (no consent).
- Norwegian Armed Forces Health Registry contains information on all persons in Norway who have been registered in or employed by the Armed Forces.
- Norwegian Patient Registry (NPR) (regular linkage) contains information from 1997 on everyone who is referred for or has received specialized healthcare at a hospital, outpatients' clinic or from contract specialists.
- Norwegian Cardiovascular Disease Registry contains information from 2012 until today about people with diseases of the heart and blood vessels, and about the treatment of these diseases
- Norwegian Adverse Drug Reaction Registry contains reports of suspected ADRS of medicinal products (including vaccines) received from from healthcare personnel and residents in Norway.
- Norwegian Registry for Primary Health Care (KPR) contains information from 2016 on applicants and recipients of healthcare in Norwegian municipalities.
- Norwegian Prescribed Drug Registry has information from 2004 on medicines dispensed by prescription from pharmacies in Norway.

For completeness of the CRN, see above or reference 2, Larsen et al 2009.
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Other

Informed consent, other

The patient can refuse the CRN to register tobacco use, occupation and/or life style factors

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

No

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

Yes

CDM Mappings

Data source ETL CDM version

5.4

Data source ETL frequency

12,00 months

Data source ETL status

In progress