serval:BIB_731102C07BFD
The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.
10.1186/s12883-018-1118-0
000442152200002
30103695
Steinemann
N.
author
Kuhle
J.
author
Calabrese
P.
author
Kesselring
J.
author
Disanto
G.
author
Merkler
D.
author
Pot
C.
author
Ajdacic-Gross
V.
author
Rodgers
S.
author
Puhan
M.A.
author
von Wyl
V.
author
Swiss Multiple Sclerosis Registry
contributor
Anderseck
B.
contributor
Calabrese
P.
contributor
Chan
A.
contributor
Disanto
G.
contributor
Engelhardt
B.
contributor
Gobbi
C.
contributor
Häussler
R.
contributor
Kamm
C.P.
contributor
Kägi
S.
contributor
Kesselring
J.
contributor
Kuhle
J.
contributor
Kurmann
R.
contributor
Lotter
C.
contributor
Luyckx
K.
contributor
Merkler
D.
contributor
Monin
P.
contributor
Müller
S.
contributor
Nedeltchev
K.
contributor
Pot
C.
contributor
Puhan
M.A.
contributor
Rapold
I.
contributor
Salmen
A.
contributor
Schippling
S.
contributor
Vaney
C.
contributor
von Wyl
V.
contributor
article
review
2018-08-13
BMC neurology
1471-2377
1471-2377
journal
18
1
111
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.
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
eng
60_published
true
peer-reviewed
Publication types: Journal Article
Publication Status: epublish
University of Lausanne
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