Norwegian Porphyria Registry

01/02/2024
28/11/2025
Data source
Human
Disease registry
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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).

Biospecimen access

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

Yes

Access to subject details

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

Yes

Description of data collection

The data collection consists of questionnaires that the participants complete themselves, and from 2015 also questionnaires that are completed by the treating physician, as well as some specific variables retrived from laboratory information systems and health records (data validation). Information is collected on diagnosis, symptoms, treatment, control and follow-up, laboratory results, as well as other health information, socio-demographic variables, quality of life and lifestyle. The variables registered in the Norwegian porphyria register are the result of many years of work in the porphyria field, both nationally and internationally.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis
Other

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

Patients filling in a questionaire

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

Other

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

If the person refuse to participate (active reservation).
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

Data can be linked to other sources using the Norwegian national identity number.

Linked data source 1

Pre linked

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

No

Data source, other

Central Norwegian health registers (such as the Medical Birth Register or the Cancer Register)

Linkage variable

Data can be linked to other sources using the Norwegian national identity number.

Linked data source 2

Pre linked

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

No

Data source, other

Other medical quality registers

Linkage variable

Data can be linked to other sources using the Norwegian national identity number.

Linked data source 3

Pre linked

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

No

Data source, other

Registers located at Statistics Norway (SSB)

Linkage variable

Data can be linked to other sources using the Norwegian national identity number.

Linked data source 4

Pre linked

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

No

Data source, other

The General Practitioner Register (HELFO)

Linkage variable

Data can be linked to other sources using the Norwegian national identity number.

Linked data source 5

Pre linked

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

No

Data source, other

The Norwegian Labor and Welfare Administration (NAV)

Linkage variable

Data can be linked to other sources using the Norwegian national identity number.
Data management specifications that apply for the data source

Data source refresh

Yearly

Informed consent for use of data for research

Required for general use

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?

Yes
Common Data Model (CDM) mapping

CDM mapping

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

No