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Frequently Asked Questions

I'm a patient. How do I enroll to the ReMuS registry?

Step 1: Visiting your MS centre
The first step is to visit the appropriate MS centre where you are being treated. Registration for ReMuS is currently only possible through these MS centres.

Step 2: Signing the Informed Consent
The next step is to sign Informed consent with the attending physician at the MS centre. This will automatically include your treatment information to the ReMuS registry. If you have any questions, the attending physician or trained staff at the MS sentre will be happy to answer them.

Once the consent is signed, the treatment information is already being processed. This process is automatic and does not involve any additional cost or time for you. 

Further information

  • Withdrawal of consent: you can withdraw your consent to registration at any time by contacting your clinician or the ReMuS registry operator.
  • Excerpt from the register: you have the right to ask the IMPULS Endowment Fund for a free excerpt from the register once a year.
  • Data protection: for detailed information on the processing of your personal data, please refer to this document.

What can I help by joining the registry?

Personal benefit
By joining the ReMuS registry, you will contribute to a better understanding of multiple sclerosis and the quality of your healthcare.

Significance for research and treatment
Multiple sclerosis is a disease that still poses many unanswered questions. The ReMuS registry is the only tool in the Czech Republic that monitors this disease nationwide and your data will help medical research and the development of new drugs.

Long-term monitoring
Clinical trials usually last two years, while your disease may take decades. Experts need long-term, reliable data that cannot be obtained from clinical trials alone. Your data can then be used to research and develop new treatments.

Statistical and epidemiological monitoring
Data from the registry will enable statistical monitoring of the incidence, causes and risk factors of the disease throughout the Czech Republic.

Evaluation of treatment efficacy
Long-term follow-up will allow you to assess how effective your treatment is. This will allow doctors to make better decisions about any changes to your treatment plan.

Healthcare planning
Thanks to the aggregated data from the registry, the state will have the basis for effective planning of finances for the treatment of multiple sclerosis.

Joint benefit
Your participation in the registry will help improve treatment not only for you, but also for current and future multiple sclerosis patients.

How is my data protected from misuse?

Personal data protection
Your data is protected in accordance with the strict criteria of the Data Protection Authority. Data from the register cannot be used for other purposes, such as marketing, unless you give your explicit consent.

Two-stage protection

  • Data anonymisation: all processed data is encrypted, which means that your identity remains anonymous.

  • Clustering and further anonymization: the data is clustered and anonymized so that it is not possible to identify your personal or sensitive information, your treating physician or insurance company in the analysis.

Consent to use of data
The ReMuS registry works with personal data from medical records. Your signed Informed Consent is required for use in the registry, which you can withdraw at any time.

Ownership and Transparency
The exclusive owner of the data in the register is the IMPULS Endowment Fund, a non-governmental, non-profit organization. The Fund regularly undergoes financial and IT audits and the results are published in the annual reports.

Publishing statistics
Statistical outputs from the register are yearly published on the website

I'm not treated at the RS Center. Can I join the registry?

Current registration options
Currently, registration for ReMuS is only possible for patients who are treated in MS centres. This limited access is due to the time and financial complexity of the project, as well as the need to ensure strict data protection.

Future plans
We plan to extend the registry to patients who are not treated in MS centres at a later stage of the project. This extension will be possible after complete mapping of treatment outside of MS centres.

How can you help
If you are not being treated at the MS Centre and would like to contribute to the development of the registry, you can support the project with a financial donation. This will help ensure the long-term operation of the registry. The Register has its own separate account with Fio bank: 2600340999/2010. Your financial contributions help us to develop the whole project. Thank you!

Newsletter registru ReMuS

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