The Swiss Multiple Sclerosis Registry (SMSR) was initiated and is funded by the Swiss MS Society. It is a patient-centered, nationwide, longitudinal study that is open to all adult persons with MS living in Switzerland. The SMSR utilizes a citizen science approach: it attempts to involve persons with MS not only as study subjects but also as MS experts, who participate in development and operation of the Registry. Other notable features of the SMSR are the flexible study design that allows participation at different commitment levels (i.e. from one-time surveys to longitudinal data collections), access to own data for participants, and the broad involvement of scientists and health care providers from many different disciplines and professions.
Main scientific objectives of the Registry entail:
- to estimate the prevalence of MS in Switzerland and to monitor epidemiologic trends over time,
- to estimate the burden of MS for affected persons and their families or proxies, and
- to establish a flexible infrastructure and a network that enables and facilitates interdisciplinary research with all interested partners.
Participation is possible via paper questionnaire or by data entry into an online platform. Surveys cover a wide range of topics on disease history, circumstances of living, mental health, MS treatment (drug and non-drug), or coping with MS. In addition to patient-reported survey outcomes, the SMSR further collects clinical data through medical record abstraction.
For more information and to participate please visit the MS Registry.