The Danish Multiple Sclerosis Registry

03/11/2025
28/01/2026
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)?

No

Access to subject details

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

No

Description of data collection

Data is recorded on a daily basis into the online platform COMPOS by health care professionals as part of clinical care and transferred automatically to the DMSR data base every morning when an updated DMSR database is created which is then downloaded by DMSR data managers routinely once a month.

The core data set covers:
· Patient characteristics
· Clinical characteristics: onset and diagnosis date and symptom, phenotype, EDSS development
· Tests: MRI, CSF
· Relapses
· Disease modifying treatments
· Adverse Events
· Visits at MS clinic
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

Event triggering creation of a record in the data source

Following the initial creation of a patient at diagnosis, any subsequent event included in the core data set triggers a new record:
· Clinical characteristics: change in phenotype, EDSS development
· Tests: MRI, CSF
· Relapses
· Disease modifying treatments
· Adverse Events
· Visits at MS clinic
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?

No

Linkage description, possible linkage

The Danish Civil Registration System provides all Danish citizens, alive in 1968 and thereafter, with a unique 10-digit person ID (CPR-nr), the first 6 digits being the date of birth.
The CPR-nr enables linkage with other Danish registries including registries on Birth, Causes of Death, Prescriptions, Socio-economics, National Patient Registry, and many more.

Linked data source 1

Pre linked

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

No
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Not Required

Possibility of data validation

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

No

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

CDM Mappings