Abstract
BackgroundMultiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide.MethodsIn light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study.The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS.The innovative study design (“layer model”) offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants.DiscussionThe SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS.Trial registrationClinicalTrials.gov NCT02980640; December 6, 2016; retrospectively registered.
Highlights
Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking
With an estimated 110 MS cases per 100,000 inhabitants, [2] the MS prevalence in Switzerland surpasses the median estimate for Europe - the region with the highest MS prevalence worldwide (80 per 100,000 inhabitants) [3]
Unlike countries with national health care systems, the highly fragmented Swiss health care landscape suffers from a lack of standardization in data collection, an inexistent legal basis for mandatory reporting of severe chronic illnesses, as well as limited information technology (IT) system interoperability between different care and health insurance providers
Summary
Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Unlike countries with national health care systems, the highly fragmented Swiss health care landscape suffers from a lack of standardization in data collection, an inexistent legal basis for mandatory reporting of severe chronic illnesses, as well as limited information technology (IT) system interoperability between different care and health insurance providers. In light of these constraints, the establishment of a medical registry with active data collection from various sources is one of very few viable options for establishing a long-term monitoring of epidemiological trends, and for promoting personalized medicine approaches in MS [4]. These research limitations can weigh heavy in chronic illnesses such as MS, often characterized by a complex management, an unclear evidence base for treatment guidelines, and on the important role of patient preferences in treatment decisions
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