The Swiss Multiple Sclerosis Registry

The Swiss Multiple Sclerosis Registry (SMSR) is a patient-centered study, with the goal of documenting the prevalence and quality of life of Persons with MS (PwMS) living in Switzerland. The registry is following a Citizen Science approach, which means, that PwMS are involved as study participants, but also as part of the research group, in their capacity as experts on the subject of MS, shaping the structure of the study itself. Initiated by the Swiss MS Society, the MS Registry is implemented by the Institute of Epidemiology, Biostatistics and Prevention at the University of Zurich in collaboration with neurological centers, rehabilitation clinics and other university institutes throughout Switzerland.

How many people are affected by MS in Switzerland and how does it affect their everyday life? What is the situation regarding access to and use of drug and non-drug treatments for MS? These and similar questions will be addressed in prospective, biannual surveys. Other research topics of the MS Registry include quality of life, mobility, personal resources, work life, mental health, the clinical progression of MS and alternative medical treatments.

The SMSR applies a flexible study design that allows participation at different commitment levels. Participation is possible by paper questionnaire or by data entry into a newly designed online platform. In addition to paper questionnaires, a newly designed online survey platform is also available for data collection, which also integrates a diary and simple evaluation functions.

From the beginning, it was set up as an inter- and transdisciplinary Citizen Science project with a transparent governance and clear rules for data usage. Persons with MS were also involved at an early stage and in the whole planning phase of the study, for example in the development of assessment tools.

Project participants:

• Prof. Milo Puhan, PD Dr. Viktor von Wyl and the Swiss MS Registry Center, University of Zurich, Epidemiology, Biostatistics and Prevention Institute S3IT, Zentrale Informatik, University of Zurich (Head Dr. Marcel Riedi)
• Prof. Jürg Kesselring (President), Rehabilitation Clinic Valens
• PD. Dr. Jens Kuhle, Neurology Clinic, University Hospital Basel
• Dr. Claude Vaney, Berner Klinik Montana
• Neurology Services at the University Hospitals of Lausanne, Basel, Berne, Zurich and the Cantonal Hospitals in St. Gallen, Lugano, Lucerne; Neurology Departments of various regional hospitals, physicians and physiotherapists in private practice; research groups at the Universities Basel, Berne, and Geneva.
• Swiss Multiple Sclerosis Society

Graphic designers:

Lukas Gallati