Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
10000 participants
OBSERVATIONAL
2016-06-30
2041-06-30
Brief Summary
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Detailed Description
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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
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Study Design
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COHORT
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
* 18 years and older
* Living in Switzerland or receiving MS care in Switzerland
Exclusion Criteria
* Not living in Switzerland and not receiving MS care in Switzerland
18 Years
ALL
No
Sponsors
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University of Zurich
OTHER
Schweizerische Multiple Sklerose Gesellschaft
OTHER
Swiss Multiple Sclerosis Registry
OTHER
Responsible Party
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Principal Investigators
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Milo Puhan, MD PhD
Role: PRINCIPAL_INVESTIGATOR
University of Zurich
Locations
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University of Zurich; Epidemiology, Biostatistics & Prevention Institute
Zurich, Canton of Zurich, Switzerland
Countries
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Central Contacts
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Facility Contacts
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References
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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.
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.
Related Links
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Description of Swiss MS Registry in German
Description of Swiss MS Registry in French
Description of Swiss MS Registry in Italian
Protocol Description of the Swiss Multiple Sclerosis Registry
Other Identifiers
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PB_2016-00894
Identifier Type: -
Identifier Source: org_study_id
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