ReMuS Registry / ReMuS, The Czech Republic Multiple Sclerosis Patient Registry / ReMuS, Registr pacientů s roztroušenou sklerózou

18/02/2026
18/02/2026
Data source
Human
Disease registry
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

ReMuS data are collected prospectively at all 15 highly specialised MS centres in the Czech Republic during routine clinical practice. These are the only facilities authorised to prescribe disease-modifying therapies (DMTs), and all are contractually part of the ReMuS network. Data are entered by treating neurologists and nurses into iMed software, built on structured drop-down menus and multiple-choice selections with limited free text.

The core data set covers: MS diagnosis and disease course, neurological episodes and disability (EDSS), relapses, DMT episodes (drug, start/stop dates, dosage, reason for discontinuation), adverse events (condition, severity, outcome, seriousness, suspected drug relationship), CSF and laboratory tests, and socio-demographics. MedDRA coding is used for serious adverse events since July 2023; retrospective conversion of historical free-text SAE records is ongoing. The BMSD Common Data Model (CDM) serves as the core harmonised output format.

Twice a year (30 June and 31 December), centres export data to a centrally secured ReMuS repository. iMed includes built-in validation checks; additionally, ReMuS runs a systematic quality process twice a year with over 100 rules, sending query reports to centres for verification against medical documentation. A continuous benchmarking framework drives data quality improvement across centres (Drahota et al., Mult Scler J 2025;31(3):880–882).

Established in 2013 under the IMPULS Endowment Fund with the Neuroimmunology and Liquorology Section (NLS) of the Czech Neurological Society, registry operations were spun off in 2024 into the ReMuS Endowment Fund.
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

Granting informed consent

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

Death
Emigration
Loss to follow up
Other

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

Withdrawal of informed consent
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

Ad-hoc linkage with the Institute of Health Information and Statistics of the Czech Republic (IHIS) is possible through direct patient-level matching for patients who have provided updated informed consent. Available IHIS data sources include: national mortality records (Register of the Deceased), administrative healthcare diagnoses (ICD-10 coded from all healthcare encounters), and pharmacy dispensation/reimbursement data.

Linked data source 1

Pre linked

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

No

Data source, other

Institute of Health Information and Statistics of the Czech Republic

Linkage strategy

Deterministic
Data management specifications that apply for the data source

Data source refresh

Every 6 months

Informed consent for use of data for research

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

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

CDM name (other)

The Big MSData Network CDM

Data source ETL CDM version

0.12

Data source ETL frequency

6,00 months

Data source ETL status

Completed