Increasing age at disability milestones among MS patients in the MSBase Registry

Kister, Ilya; Chamot, Eric; Cutter, Gary; Bacon, Tamar; Jokubaitis, Vilija; Hughes, Stella; Gray, Orla; Trojano, María; Izquierdo, Guillermo; Grand’Maison, François; Duquette, Pierre; Grammond, Pierre; Boz, Cavit; Hupperts, Raymond; Petersen, Thor; Giuliani, G.; Oreja‐Guevara, Celia; Iuliano, Gerardo; Lechner‐Scott, Jeannette; Bergamaschi, Roberto; Rio, Maria Edite; Verheul, Freek; Fiol, Marcela; Pesch, Vincent Van; Slee, Mark; Butzkueven, Helmut; Herbert, Joseph

doi:10.1016/j.jns.2012.03.017

Cited by 35 publications

(31 citation statements)

References 26 publications

(34 reference statements)

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“…The limitations relate to the biases attendant to observational studies,24 including selection bias, confounding by unmeasured variables (ie, lesion burden on MRI at baseline) and lack of data completeness for some variables. Demographic and disability data were available for all patients, while ‘reasons for DMT discontinuation’ is currently not a required field in the MSBase minimum data set and was not recorded for most of the stoppers.…”

Section: Discussionmentioning

confidence: 99%

Discontinuing disease-modifying therapy in MS after a prolonged relapse-free period: a propensity score-matched study

Kister

Spelman

Alroughani

et al. 2016

J Neurol Neurosurg Psychiatry

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Section: Discussionmentioning

confidence: 99%

Discontinuing disease-modifying therapy in MS after a prolonged relapse-free period: a propensity score-matched study

Kister

Spelman

Alroughani

et al. 2016

J Neurol Neurosurg Psychiatry

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“…This concurs with results from a self-enrolling online registry—NARCOMS—that reported one-third of their participants enrolled within two years of diagnosis and also had a median disability score of 3 (1–5) on the PDDS [22]. Compared to the MSBase international registry (which is physician enrolled) with over 11,000 participants from 26 countries, in general the participants in our study were older at enrolment, were diagnosed at an older age, and had a shorter disease duration at enrolment [45] (Table 9). It is possible that patients who are recently diagnosed seek out information and support through online communities early in the illness and may be more motivated to contribute to research in the hope that it will offer some new evidence for the successful treatment of their condition.…”

Section: Discussionmentioning

confidence: 99%

Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics

Hadgkiss

Jelinek

Weiland

et al. 2013

Neurology Research International

102

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Background. Despite evidence of the potential importance of the role of health and lifestyle behaviours in multiple sclerosis (MS) outcomes, there has not been a significant focus on this area of research. Aim. We aimed to recruit an international sample of people with MS at baseline and over a five-year timeframe, examine their health and lifestyle behaviours, and determine the relationship of these behaviours to self-reported disability, disease activity, and quality of life. Methods. People with MS were recruited through web 2.0 platforms including interactive websites, social media, blogs, and forums and completed a comprehensive, multifaceted online questionnaire incorporating validated and researcher-derived tools. Results. 2519 participants met inclusion criteria for this study. This paper describes the study methodology in detail and provides an overview of baseline participant demographics, clinical characteristics, summary outcome variables, and health and lifestyle behaviours. The sample described is unique due to the nature of recruitment through online media and due to the engagement of the group, which appears to be well informed and proactive in lifestyle modification. Conclusion. This sample provides a sound platform to undertake novel exploratory analyses of the association between a variety of lifestyle factors and MS outcomes.

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“…Although the small sample size may have limited our ability to detect a significant effect of EPVS toward accrual of disability and brain damage, the provided estimates and confidence intervals (Tables and ) represent a useful resource to plan future prospective studies of larger cohorts. In the present study, we investigated the effect of EPVS on disease worsening using selection and group allocation criteria based on an established disability milestone (EDSS≥3) employed in other studies . Different inclusion and group definition criteria may improve our sensitivity in detecting differences in EPVS, for instance, between faster and slower progressive patients, in future studies.…”

Section: Discussionmentioning

confidence: 99%

Evaluating the Association between Enlarged Perivascular Spaces and Disease Worsening in Multiple Sclerosis

Cavallari

Egorova

Healy

et al. 2017

Journal of Neuroimaging

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Our preliminary findings from a relatively small study sample argue against a potential use of EPVS as early indicator of risk for disease worsening in relapsing-remitting MS patients in a clinical setting. Although the small sample size and clinical 1.5T MRI may have limited our ability to detect a significant effect, we provided estimates of the association of EPVS with clinical and MRI indicators of disease worsening in a well-characterized cohort of MS patients.

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Increasing age at disability milestones among MS patients in the MSBase Registry

Cited by 35 publications

References 26 publications

Discontinuing disease-modifying therapy in MS after a prolonged relapse-free period: a propensity score-matched study

Discontinuing disease-modifying therapy in MS after a prolonged relapse-free period: a propensity score-matched study

Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics

Evaluating the Association between Enlarged Perivascular Spaces and Disease Worsening in Multiple Sclerosis

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