The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.
Details
Serval ID
serval:BIB_731102C07BFD
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.
Journal
BMC neurology
Working group(s)
Swiss Multiple Sclerosis Registry
Contributor(s)
Anderseck B., Calabrese P., Chan A., Disanto G., Engelhardt B., Gobbi C., Häussler R., Kamm C.P., Kägi S., Kesselring J., Kuhle J., Kurmann R., Lotter C., Luyckx K., Merkler D., Monin P., Müller S., Nedeltchev K., Pot C., Puhan M.A., Rapold I., Salmen A., Schippling S., Vaney C., von Wyl V.
ISSN
1471-2377 (Electronic)
ISSN-L
1471-2377
Publication state
Published
Issued date
13/08/2018
Peer-reviewed
Oui
Volume
18
Number
1
Pages
111
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
Publication Status: epublish
Abstract
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. 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.
In 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.
The 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.
ClinicalTrials.gov NCT02980640 ; December 6, 2016; retrospectively registered.
In 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.
The 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.
ClinicalTrials.gov NCT02980640 ; December 6, 2016; retrospectively registered.
Keywords
Adolescent, Adult, Biomedical Research/methods, Clinical Protocols, Humans, Multiple Sclerosis/epidemiology, Multiple Sclerosis/therapy, Patient Participation, Patient-Centered Care, Prospective Studies, Registries, Research Design, Surveys and Questionnaires, Switzerland/epidemiology, Young Adult, Epidemiology, Health-related quality of life, Multiple sclerosis, Patient-reported outcomes, Switzerland
Pubmed
Web of science
Open Access
Yes
Create date
20/08/2018 15:42
Last modification date
20/08/2019 15:31
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