A Citizen Science Platform for MS Research
To estimate the prevalence of MS in Switzerland and to monitor epidemiological trends over time.
Main aims: There are no actual prevalence data of MS in Switzerland.
Prevalence studies performend 30 years ago (Beer and Kesselring,1994) still remain the benchmark for Switzerland until today. We assume that the prevalence is higher than the 10'000 persons with MS postulated by Beer and Kesselring.
The Swiss Multiple Sclerosis Registry (SMSR) is based on an initiative of the Swiss MS Society. It is a patient-centered,
nationwide, longitudinal study that is open to all adult Persons with MS (PwMS) living in Switzerland.
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. PwMS were also involved at an early stage in the whole planning phase of the study, for example in the development of assessment tools.
The SMSR applies a flexible study design that allows participation at different commitment levels (see fig. 1, i.e. from one-time surveys to longitudinal data collections, e.g. follow-up surveys). Participation is possible by paper questionnaire or by data entry into a newly designed online platform. This platform also offers MS disease management tools for PwMS and physicians (e.g. data visualizations or a diary, see fig. 2). 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 will further collect clinical data through medical record abstraction.
Citizen Science approaches:
- Initiative came from PwMS
- PwMS are part of the governance structure of the SMSR
- PwMS were involved at an early project stage, i.e. in the study design and development of assessment tools (surveys, diary)
- Involvement of PwMS in pretests and revisisons of questionnaires
- PwMS are involved in the recruitment of study participants (by actively promoting the SMSR and inviting other people to the SMSR)
- Regular data feedback to PwMS and possibility to correct mistakes in their own data (see fig. 3)