Swiss Multiple Sclerosis Registry (SMSR)

April 16, 2024 updated by: Swiss Multiple Sclerosis Registry
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.

Study Overview

Status

Recruiting

Conditions

Detailed Description

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

Enrollment (Estimated)

10000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

  • Switzerland
      • Zurich, Switzerland, 8001
        • Recruiting
        • University of Zurich; Epidemiology, Biostatistics & Prevention Institute
        • Contact:
        • Contact:

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

No

Sampling Method

Non-Probability Sample

Study Population

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

Description

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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
Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
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
Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
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
Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
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
Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Occurrence of MS Relapse
Time Frame: Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months
Self-report of MS relapse(s)
Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Swiss Multiple Sclerosis Registry

Collaborators

Schweizerische Multiple Sklerose Gesellschaft
University of Zurich, Epidemiology, Biostatistics and Prevention Institute

Investigators

  • Principal Investigator: Milo Puhan, MD PhD, University of Zurich

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

June 1, 2016

Primary Completion (Estimated)

June 1, 2041

Study Completion (Estimated)

June 1, 2041

Study Registration Dates

First Submitted

November 23, 2016

First Submitted That Met QC Criteria

November 29, 2016

First Posted (Estimated)

December 2, 2016

Study Record Updates

Last Update Posted (Actual)

April 17, 2024

Last Update Submitted That Met QC Criteria

April 16, 2024

Last Verified

April 1, 2024

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • PB_2016-00894

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

YES

IPD Plan Description

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

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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