Swiss Multiple Sclerosis Registry

NCT ID: NCT02980640

Last Updated: 2025-05-15

Study Results

Results pending

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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Recruitment Status

RECRUITING

Total Enrollment

10000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-06-30

Study Completion Date

2041-06-30

Brief Summary

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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.

Detailed Description

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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

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Multiple Sclerosis

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Persons with a confirmed Multiple Sclerosis Diagnosis
* 18 years and older
* Living in Switzerland or receiving MS care in Switzerland

Exclusion Criteria

* Younger than 18 years
* Not living in Switzerland and not receiving MS care in Switzerland
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University of Zurich

OTHER

Sponsor Role collaborator

Schweizerische Multiple Sklerose Gesellschaft

OTHER

Sponsor Role collaborator

Swiss Multiple Sclerosis Registry

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

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

Site Status RECRUITING

Countries

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Switzerland

Central Contacts

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Milo Puhan, MD PhD

Role: CONTACT

++41 (0)44 634 4610

Viktor von Wyl, PhD

Role: CONTACT

++41 (0)44 634 6380

Facility Contacts

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Viktor von Wyl, PhD

Role: primary

++41 (0)44 634 6380

Milo Puhan, MD PhD

Role: backup

++41 (0)44 634 4610

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.

Reference Type DERIVED
PMID: 31595377 (View on PubMed)

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.

Reference Type DERIVED
PMID: 30103695 (View on PubMed)

Related Links

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http://www.ms-register.ch

Description of Swiss MS Registry in German

http://www.registre-sep.ch

Description of Swiss MS Registry in French

http://www.registro-sm.ch

Description of Swiss MS Registry in Italian

https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-018-1118-0

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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