Multiple SclerosisSMSRNCT02980640
Swiss Multiple Sclerosis Registry
An observational study of Multiple Sclerosis, run by Swiss Multiple Sclerosis Registry at 1 site in Switzerland.
Trial summary
The Swiss Multiple Sclerosis Registry is a national, patient-centered registry with the aim to document the epidemiology of multiple sclerosis (MS), as well as the quality of life of persons living with MS in Switzerland. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Multiple Sclerosis
- How many people
- 10,000 participants
- Where
- 1 siteSwitzerland
- Study dates
- Jun 2016to Jun 2041
- How long will I take part?
- 25 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: All persons with Multiple Sclerosis who either live in Switzerland or who recieve MS care in Switzerland
Who may be able to join
- Persons with a confirmed Multiple Sclerosis Diagnosis
- 18 years and older
- Living in Switzerland or receiving MS care in Switzerland
Who cannot join
- Younger than 18 years
- Not living in Switzerland and not receiving MS care in Switzerland
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Switzerland1 site, 1 recruiting
- Recruiting
University of Zurich; Epidemiology, Biostatistics & Prevention Institute
Zurich, Canton of Zurich, 8001
Viktor von Wyl, PhD, ++41 (0)44 634 6380, viktor.vonwyl@uzh.ch
Milo Puhan, MD PhD, ++41 (0)44 634 4610, miloalan.puhan@uzh.ch
About this study
The Swiss Multiple Sclerosis Registry is a national, patient-centered registry with the aim to document the epidemiology of multiple sclerosis (MS), as well as the quality of life of persons living with MS in Switzerland.
Read the detailed description
The Swiss Multiple Sclerosis Registry is a national, patient-centered research project with the aim to document the epidemiology of multiple sclerosis (MS), as well as the quality of life of persons living with MS in Switzerland. The Swiss MS Registry pursues a "Citizen Science" approach, that is, persons with MS are not just study participants but also act as MS experts and are active contributors to the interdisciplinary Swiss MS Registry research network. Initiated and funded by the Swiss MS Society, the Swiss MS Registry represents a collaborative effort by numerous MS caregivers, researchers and persons with MS. It is hosted by the Epidemiology, Biostatistics and Prevention Institute at the University of Zurich.
How many MS-affected persons are living in Switzerland and how are they coping with MS in their daily lives? What is the current situation with regard to access to and use of drug and non-drug treatments for MS? These and other questions are addressed by means of semi-annual surveys. Further research activities concern the quality of life of persons with MS, mobility, personal resources and support by friends and family, work situation, mental health, clinical progression of MS, as well as alternative therapies.
Owing to a flexible study design, participants can decide between different levels of commitment (from one-time surveys to repeated, semiannual surveys and medical records review). Furthermore, study participants receive summaries of their data as charts and tables. Data collection primarily occurs via a newly designed online platform, but paper-and-pencil questionnaires are also available. As an additional incentive, the online platform includes a diary with basic capabilities for analyses and printing.
- Conditions
- Multiple Sclerosis
- Keywords
- Multiple Sclerosis, Treatment, Quality of Life, Symptoms
- Medical subject headings
- Multiple Sclerosis
What is being measured
The primary outcome is the main question the study is designed to answer.
Change in Health-Related Quality of Life
Assessment via EQ-5D
Measured: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Change in Self-Assessment of Health Status
Assessment via Visual Analogue Scale
Measured: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Secondary outcomes (3)
Occurrence of MS Symptoms
Self-report of new and recurrent MS symptoms
Measured: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Occurrence of Adverse Drug Effects
Self-report of unwanted drug side effects
Measured: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Occurrence of MS Relapse
Self-report of MS relapse(s)
Measured: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted2 Dec 2016 (estimated)
- Study startJun 2016
- Primary completionJun 2041 (estimated)
- Study completionJun 2041 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for Multiple SclerosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 10,000 participants (estimated)
- Target duration
- 25 Years
Sponsor and investigators
- Lead sponsor
- Swiss Multiple Sclerosis Registry
- Sponsor type
- University, hospital or other
- Collaborators
- University of Zurich, Schweizerische Multiple Sklerose Gesellschaft
- Responsible party
- Sponsor
- Investigators
- Milo Puhan, MD PhD, Principal investigator, University of Zurich
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02980640
- Sponsor's protocol ID
- PB_2016-00894
- Acronym
- SMSR
- Status last verified
- May 2025
- First submitted
- 23 Nov 2016
- Last updated
- 15 May 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Pseudonimized data are shared with other researchers upon approval of a project proposal. Guidelines describing submission and approval process are in place.
Publications
Kamm CP, Barin L, Gobbi C, Pot C, Calabrese P, Salmen A, Achtnichts L, Kesselring J, Puhan MA, von Wyl V; Swiss Multiple Sclerosis Registry (SMSR). Factors influencing patient satisfaction with the first diagnostic consultation in multiple sclerosis: a Swiss Multiple Sclerosis Registry (SMSR) study. J Neurol. 2020 Jan;267(1):153-161. doi: 10.1007/s00415-019-09563-y. Epub 2019 Oct 8.
PubMed 31595377Steinemann N, Kuhle J, Calabrese P, Kesselring J, Disanto G, Merkler D, Pot C, Ajdacic-Gross V, Rodgers S, Puhan MA, von Wyl V; Swiss Multiple Sclerosis Registry. The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research. BMC Neurol. 2018 Aug 13;18(1):111. doi: 10.1186/s12883-018-1118-0.
PubMed 30103695
Study at a glance
From the registry record, last updated by the sponsor on 15 May 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Swiss Multiple Sclerosis Registry
- ClinicalTrials.gov ID
- NCT02980640
- Acronym / sponsor ID
- SMSR / PB_2016-00894
- Conditions
- Multiple Sclerosis
- Keywords
- Multiple Sclerosis, Treatment, Quality of Life, Symptoms
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 10,000 participants (estimated)
- Lead sponsor
- Swiss Multiple Sclerosis RegistryUniversity, hospital or other
- Collaborators
- University of Zurich, Schweizerische Multiple Sklerose Gesellschaft
- Study start
- Jun 2016
- Primary completion
- Jun 2041 (estimated)
- Study completion
- Jun 2041 (estimated)
- First posted
- 2 Dec 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The Swiss Multiple Sclerosis Registry is a national, patient-centered registry with the aim to document the epidemiology of multiple sclerosis (MS), as well as the quality of life of persons living with MS in Switzerland.
Detailed description
The Swiss Multiple Sclerosis Registry is a national, patient-centered research project with the aim to document the epidemiology of multiple sclerosis (MS), as well as the quality of life of persons living with MS in Switzerland. The Swiss MS Registry pursues a "Citizen Science" approach, that is, persons with MS are not just study participants but also act as MS experts and are active contributors to the interdisciplinary Swiss MS Registry research network. Initiated and funded by the Swiss MS Society, the Swiss MS Registry represents a collaborative effort by numerous MS caregivers, researchers and persons with MS. It is hosted by the Epidemiology, Biostatistics and Prevention Institute at the University of Zurich.
How many MS-affected persons are living in Switzerland and how are they coping with MS in their daily lives? What is the current situation with regard to access to and use of drug and non-drug treatments for MS? These and other questions are addressed by means of semi-annual surveys. Further research activities concern the quality of life of persons with MS, mobility, personal resources and support by friends and family, work situation, mental health, clinical progression of MS, as well as alternative therapies.
Owing to a flexible study design, participants can decide between different levels of commitment (from one-time surveys to repeated, semiannual surveys and medical records review). Furthermore, study participants receive summaries of their data as charts and tables. Data collection primarily occurs via a newly designed online platform, but paper-and-pencil questionnaires are also available. As an additional incentive, the online platform includes a diary with basic capabilities for analyses and printing.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 25 Years
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- All persons with Multiple Sclerosis who either live in Switzerland or who recieve MS care in Switzerland
Key inclusion criteria (3 listed)
- Persons with a confirmed Multiple Sclerosis Diagnosis
- 18 years and older
- Living in Switzerland or receiving MS care in Switzerland
Key exclusion criteria (2 listed)
- Younger than 18 years
- Not living in Switzerland and not receiving MS care in Switzerland
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Change in Health-Related Quality of Life
Time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Assessment via EQ-5D
Change in Self-Assessment of Health Status
Time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Assessment via Visual Analogue Scale
3 secondary outcomes
Occurrence of MS Symptoms
Time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Occurrence of Adverse Drug Effects
Time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Occurrence of MS Relapse
Time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 15 May 2025.
- Derived from this study: PubMed 31595377Kamm CP, Barin L, Gobbi C, Pot C, Calabrese P, Salmen A, Achtnichts L, Kesselring J, Puhan MA, von Wyl V; Swiss Multiple Sclerosis Registry (SMSR). Factors influencing patient satisfaction with the first diagnostic consultation in multiple sclerosis: a Swiss Multiple Sclerosis Registry (SMSR) study. J Neurol. 2020 Jan;267(1):153-161. doi: 10.1007/s00415-019-09563-y. Epub 2019 Oct 8.
- Derived from this study: PubMed 30103695Steinemann N, Kuhle J, Calabrese P, Kesselring J, Disanto G, Merkler D, Pot C, Ajdacic-Gross V, Rodgers S, Puhan MA, von Wyl V; Swiss Multiple Sclerosis Registry. The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research. BMC Neurol. 2018 Aug 13;18(1):111. doi: 10.1186/s12883-018-1118-0.
- Description of Swiss MS Registry in GermanLink provided by the sponsor.
- Description of Swiss MS Registry in FrenchLink provided by the sponsor.
- Description of Swiss MS Registry in ItalianLink provided by the sponsor.
- Protocol Description of the Swiss Multiple Sclerosis RegistryLink provided by the sponsor.
- Individual participant dataSharing planned: Yes. Pseudonimized data are shared with other researchers upon approval of a project proposal. Guidelines describing submission and approval process are in place.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Milo Puhan, MD PhD principal investigator
University of Zurich
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Multiple Sclerosis, run by Swiss Multiple Sclerosis Registry at 1 site in Switzerland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 15 May 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Switzerland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Milo Puhan, MD PhD (++41 (0)44 634 4610, miloalan.puhan@uzh.ch), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Change in Health-Related Quality of Life (time frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT02980640, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 15 May 2025; AzTrials last refreshed its copy on 1 Nov 2026.