The Swedish Multiple Sclerosis Registry

09/06/2026
09/06/2026
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).
Neuroreg.se/omoss.se/

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

Clinician reported data are entered by clinicians, most commonly directly in the context of a clinical visit or digital contact, through a clinical decision support tool, named COMPOS-DS, which is part of the clinical documentation systems used in all neurology units in Sweden. From each department’s server domain, an export is made every morning to the SQL server which is the proper Swedish MS registry. In addition, patients can log into a patient portail and respond to a set of questionnaires at will. These records are then reviewed and imported into the COMPOS-DS system by the responsible clinician and become part of the daily export roun tine into the SMSreg SQL server domain.
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

Death
Emigration

Event triggering creation of a record in the data source

Patients are typically entered into the registry at diagnosis or close thereafter. Records are then created at every direct contact (visit or digital contact) or when investigations have been performed (body fluid analyses, imaging) and when patient reported data are being reviewed and entered into COMPOS-DS by the responsible clinician.
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, pre-linked

SMSreg is linked twice a year to the population registry at Statistics Sweden. Patients who are reported dead or emigrated are identified are classified as having terminated the registration but their data are retained.

Linkage description, possible linkage

SMSreg data can be linked to other health data sources in Sweden by using the unique person identifier. Important such data bases are fiscal and socioeconomic data from Statistics Sweden and health data bases from the Board of Health and Welfare: The National patient registry (ICD-10 codes from in-patient and specialised care, the National prescription data base, the Registry on pregnancy and pregnancy outcomes, and the Swedish Cancer registry. In principle, as being a national quality registry, the SMSreg can be linked to any other of the approximately 150 national quality registries (diseases, procedures, care settings etc)
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

Data source preservation length

Not limited, only taken out at the will of the patient years

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