Swiss MS Registry - Registry Development
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.
Output
- The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.
Steinemann N, Kuhle J, Calabrese P, Kesselring J, Disanto G, Merkler D, Pot C, Ajdacic-Gross V, Rodgers S, Puhan MA, von Wyl V; Swiss Multiple Sclerosis Registry.BMC Neurol. 2018 Aug 13;18(1):111. doi: 10.1186/s12883-018-1118-0.PMID: 30103695 Free PMC article.
- A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity.
Puhan MA, Steinemann N, Kamm CP, Müller S, Kuhle J, Kurmann R, Calabrese P, Kesselring J, von Wyl V, Swiss Multiple Sclerosis Registry Smsr.Swiss Med Wkly. 2018 May 16;148:w14623. doi: 10.4414/smw.2018.14623. eCollection 2018.PMID: 29767828 Free article.
- Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis.
Kaufmann M, Puhan MA, Kuhle J, Yaldizli Ö, Magnusson T, Kamm CP, Calabrese P, von Wyl V.Front Neurol. 2019 Sep 4;10:953. doi: 10.3389/fneur.2019.00953. eCollection 2019. PMID: 31555205 Free PMC article.
- Electronic Health Diary Campaigns to Complement Longitudinal Assessments in Persons With Multiple Sclerosis: Nested Observational Study.
Sieber C, Chiavi D, Haag C, Kaufmann M, Horn AB, Dressel H, Zecca C, Calabrese P, Pot C, Kamm CP, von Wyl V; Swiss Multiple Sclerosis Registry.JMIR Mhealth Uhealth. 2022 Oct 5;10(10):e38709. doi: 10.2196/38709.