Swiss Multiple Sclerosis Registry (SMSR)
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|ClinicalTrials.gov Identifier: NCT02980640|
Recruitment Status : Recruiting
First Posted : December 2, 2016
Last Update Posted : October 22, 2020
|Condition or disease|
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 Type :||Observational [Patient Registry]|
|Estimated Enrollment :||10000 participants|
|Target Follow-Up Duration:||25 Years|
|Official Title:||Swiss Multiple Sclerosis Registry|
|Study Start Date :||June 2016|
|Estimated Primary Completion Date :||June 2041|
|Estimated Study Completion Date :||June 2041|
- 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
- Occurrence of MS Symptoms [ Time Frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months ]Self-report of new and recurrent MS symptoms
- Occurrence of Adverse Drug Effects [ Time Frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months ]Self-report of unwanted drug side effects
- Occurrence of MS Relapse [ Time Frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months ]Self-report of MS relapse(s)
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02980640
|Contact: Milo Puhan, MD PhD||++41 (0)44 634 firstname.lastname@example.org|
|Contact: Viktor von Wyl, PhD||++41 (0)44 634 email@example.com|
|Principal Investigator:||Milo Puhan, MD PhD||University of Zurich|