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| Name | Class |
|---|---|
| University of Zurich | OTHER |
| Schweizerische Multiple Sklerose Gesellschaft | OTHER |
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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.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| Change in Health-Related Quality of Life | Assessment via EQ-5D | Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months |
| Change in Self-Assessment of Health Status | Assessment via Visual Analogue Scale | Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months |
| Measure | Description | Time Frame |
|---|---|---|
| Occurrence of MS Symptoms | Self-report of new and recurrent MS symptoms | Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months |
| Occurrence of Adverse Drug Effects | Self-report of unwanted drug side effects |
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Inclusion Criteria:
Exclusion Criteria:
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All persons with Multiple Sclerosis who either live in Switzerland or who recieve MS care in Switzerland
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Milo Puhan, MD PhD | Contact | ++41 (0)44 634 4610 | miloalan.puhan@uzh.ch | |
| Viktor von Wyl, PhD | Contact | ++41 (0)44 634 6380 | viktor.vonwyl@uzh.ch |
| Name | Affiliation | Role |
|---|---|---|
| Milo Puhan, MD PhD | University of Zurich | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Zurich; Epidemiology, Biostatistics & Prevention Institute | Recruiting | Zurich | Canton of Zurich | 8001 | Switzerland |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 31595377 | Derived | 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. | |
| 30103695 |
| Label | URL |
|---|---|
| Description of Swiss MS Registry in German | View source |
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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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| ID | Term |
|---|---|
| D009103 | Multiple Sclerosis |
| ID | Term |
|---|---|
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D003711 | Demyelinating Diseases |
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| Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months |
| Occurrence of MS Relapse | Self-report of MS relapse(s) | Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months |
| Derived |
| Steinemann 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 French | View source |
| Description of Swiss MS Registry in Italian | View source |
| Protocol Description of the Swiss Multiple Sclerosis Registry | View source |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |