Swiss Multiple Sclerosis Registry
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.
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.
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