NCT02980640

Brief 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.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
10,000

participants targeted

Target at P75+ for all trials

Timeline
183mo left

Started Jun 2016

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress40%
Jun 2016Jun 2041

Study Start

First participant enrolled

June 1, 2016

Completed
6 months until next milestone

First Submitted

Initial submission to the registry

November 23, 2016

Completed
9 days until next milestone

First Posted

Study publicly available on registry

December 2, 2016

Completed
24.5 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 1, 2041

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

June 1, 2041

Last Updated

May 15, 2025

Status Verified

May 1, 2025

Enrollment Period

25 years

First QC Date

November 23, 2016

Last Update Submit

May 12, 2025

Conditions

Multiple Sclerosis

Keywords

Multiple SclerosisTreatmentQuality of LifeSymptoms

Outcome Measures

Primary Outcomes (2)

  • 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

Secondary Outcomes (3)

  • Occurrence of MS Symptoms

    Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months

  • Occurrence of Adverse Drug Effects

    Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months

  • Occurrence of MS Relapse

    Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

All persons with Multiple Sclerosis who either live in Switzerland or who recieve MS care in Switzerland

You may qualify if:

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

You may not qualify if:

  • Younger than 18 years
  • Not living in Switzerland and not receiving MS care in Switzerland

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Zurich; Epidemiology, Biostatistics & Prevention Institute

Zurich, Canton of Zurich, 8001, Switzerland

RECRUITING

Related Publications (2)

  • 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.

    PMID: 31595377DERIVED

  • 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.

    PMID: 30103695DERIVED

Related Links

MeSH Terms

Conditions

Multiple Sclerosis

Condition Hierarchy (Ancestors)

Demyelinating Autoimmune Diseases, CNSAutoimmune Diseases of the Nervous SystemNervous System DiseasesDemyelinating DiseasesAutoimmune DiseasesImmune System Diseases

Study Officials

  • Milo Puhan, MD PhD

    University of Zurich

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Milo Puhan, MD PhD

CONTACT

++41 (0)44 634 4610miloalan.puhan@uzh.ch

Viktor von Wyl, PhD

CONTACT

++41 (0)44 634 6380viktor.vonwyl@uzh.ch

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Target Duration
25 Years
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

November 23, 2016

First Posted

December 2, 2016

Study Start

June 1, 2016

Primary Completion (Estimated)

June 1, 2041

Study Completion (Estimated)

June 1, 2041

Last Updated

May 15, 2025

Record last verified: 2025-05

Data Sharing

IPD Sharing
Will share

Pseudonimized data are shared with other researchers upon approval of a project proposal. Guidelines describing submission and approval process are in place.

Locations

CH(1)