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The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research

Overview of attention for article published in BMC Neurology, August 2018
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About this Attention Score

  • Above-average Attention Score compared to outputs of the same age (52nd percentile)

Mentioned by

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2 tweeters

Citations

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5 Dimensions

Readers on

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43 Mendeley
Title
The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research
Published in
BMC Neurology, August 2018
DOI 10.1186/s12883-018-1118-0
Pubmed ID
Authors

Nina Steinemann, Jens Kuhle, Pasquale Calabrese, Jürg Kesselring, Giulio Disanto, Doron Merkler, Caroline Pot, Vladeta Ajdacic-Gross, Stephanie Rodgers, Milo Alan Puhan, Viktor von Wyl

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.

Twitter Demographics

The data shown below were collected from the profiles of 2 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 43 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 43 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 8 19%
Student > Ph. D. Student 5 12%
Student > Bachelor 5 12%
Student > Master 5 12%
Other 4 9%
Other 10 23%
Unknown 6 14%
Readers by discipline Count As %
Medicine and Dentistry 18 42%
Neuroscience 3 7%
Nursing and Health Professions 3 7%
Computer Science 2 5%
Psychology 2 5%
Other 6 14%
Unknown 9 21%

Attention Score in Context

This research output has an Altmetric Attention Score of 2. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 14 August 2018.
All research outputs
#7,218,574
of 13,370,967 outputs
Outputs from BMC Neurology
#619
of 1,517 outputs
Outputs of similar age
#122,301
of 266,755 outputs
Outputs of similar age from BMC Neurology
#1
of 1 outputs
Altmetric has tracked 13,370,967 research outputs across all sources so far. This one is in the 44th percentile – i.e., 44% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,517 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.4. This one has gotten more attention than average, scoring higher than 55% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 266,755 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 52% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them