Swiss Multiple Sclerosis Registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT02980640

Acronym

SMSR

Enrollment

10000

Registered

2016-12-02

Start date

2016-06-30

Completion date

2041-06-30

Last updated

2025-05-15

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Multiple Sclerosis

Keywords

Multiple Sclerosis, Treatment, Quality of Life, Symptoms

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.

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
Change in Health-Related Quality of Life	Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months	Assessment via EQ-5D
Change in Self-Assessment of Health Status	Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months	Assessment via Visual Analogue Scale

Secondary

Measure	Time frame	Description
Occurrence of MS Symptoms	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	Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months	Self-report of unwanted drug side effects
Occurrence of MS Relapse	Baseline; 6, 12, 18, 24, 30, 36, 42, 48, 54, 60 months	Self-report of MS relapse(s)

Countries

Switzerland

Contacts

Primary ContactMilo Puhan, MD PhD

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

Backup ContactViktor von Wyl, PhD

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

Outcome results