Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository

Bradford, Elissa Held; Baert, Ilse; Finlayson, Marcia; Feys, Peter; Wagner, Joanne M.

doi:10.7224/1537-2073.2016-009

Cited by 6 publications

(7 citation statements)

References 16 publications

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“…However, early stages of the development of data repositories in some populations denote notable progress in meeting these challenges. A Multiple Sclerosis Rehabilitation Repository (MSRehabRep) can potentially store, retrieve, and share rehabilitation information in MS to support clinicians and researchers [27]. Focus groups from various stakeholders prioritized key features to "envision" retrospective and prospective data use in the MS population [27].…”

Section: Accessibility and Conveniencementioning

confidence: 99%

Improving Clinical Practice with Person-Centered Outcome Measurement

Allen

Pak

2022

Springer Series in Measurement Science and Technology

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Measurement choices play a critical role in improving healthcare systems. As this book describes, improved measurement can promote excellence in person-centered outcomes through health policy, methodology, theory, and clinical practice. This chapter focuses on measurement choices within clinical practice that can guide decision-making for improved outcomes. The overall objective is for clinical practice to deliver high-quality and equitable healthcare tailored to the unique situation of each specific person. Separate sections discuss the context surrounding measurement choices, specific dilemmas or competing priorities that affect measurement choices, and recommendations for improving person-centered outcome measurement.

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Section: Accessibility and Conveniencementioning

confidence: 99%

Improving Clinical Practice with Person-Centered Outcome Measurement

Allen

Pak

2022

Springer Series in Measurement Science and Technology

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“…There is increasing international interest to collaborate and share data among different stakeholders. 25,26 There are several reasons to share (and not share) data and to use (or not use) shared data which are illustrated in Figure 2. Policies of data sharing should rest upon knowledge of how data are shared and how end-users use data that have been shared to them.…”

Section: Current Observational Multidisciplinary Ms Data Initiativesmentioning

confidence: 99%

Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!

et al. 2018

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Personalized treatment is highly desirable in multiple sclerosis (MS). We believe that multidisciplinary measurements including clinical, functional and patient-reported outcome measures in combination with extensive patient profiling can enhance personalized treatment and rehabilitation strategies. We elaborate on four reasons behind this statement: (1) MS disease activity and progression are complex and multidimensional concepts in nature and thereby defy a one-size-fits-all description, (2) functioning, progression, treatment, and rehabilitation effects are interdependent and should be investigated together, (3) personalized healthcare is based on the dynamics of system biology and on technology that confirms a patient’s fundamental biology and (4) inclusion of patient-reported outcome measures can facilitate patient-relevant healthcare. We discuss currently available multidisciplinary MS data initiatives and introduce joint actions to further increase the overall success. With this topical review, we hope to drive the MS community to invest in expanding towards more multidisciplinary and longitudinal data collection.

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“…directly by drug companies, encouraging multicenter data collection on mobility and upper limb function, discussing adherence to rehabilitation, exploring possibilities for international rehabilitation databases, establishing new intervention strategies, summarizing evidence in the electronic systems, developing guidelines as for palliative care, and other. [7][8][9][10] The vision of RIMS is that every person with MS receives evidence-based rehabilitation when they need it. The organization still has challenges ahead in education, research, and health service advocacy, and this during challenging times requiring digital communication strategies and the need to embrace telerehabilitation innovations.…”

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confidence: 99%

Guest Editorial

Feys

2020

International Journal of MS Care

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Guest Editorials T he RIMS (Rehabilitation in Multiple Sclerosis) network is now approaching its 30th anniversary, in 2021. It is a pleasure to look back, with so many others, to the discipline of rehabilitation in general, and developments witnessed in rehabilitation for persons with multiple sclerosis (MS). Rehabilitation in general has evolved to an evidencebased discipline. The importance, specificity, and rigor of scientific research in rehabilitation sciences have been highlighted, relatively recently, by the establishment of the Cochrane Rehabilitation Field (see https://rehabilitation.cochrane.org/). Rehabilitation research is now also substantial in the area of MS, with evidence being summarized in a plenitude of systematic reviews on different themes. 1 However, multidisciplinary and updated guidelines to guide clinicians, therapists, and health care managers are so far lacking. 2 The most comprehensive formally developed guideline was published by NICE (National Institute for Health and Care Excellence), United Kingdom (see https://www.nice.org.uk/guidance/cg186), in 2014 but could benefit from more specificity. In addition, an EMSP (European Multiple Sclerosis Platform)-RIMS publication was distributed in 2012 with an expert overview (editor Thomas Henze; see https://www.eurims.org/News/recommendations-onrehabilitation-services-for-persons-with-multiple-sclerosis-in-europe.html). Consulting the APPECO database for recent evidence is also enlightening, as addressed in an article in this theme issue of the International Journal of MS Care (IJMSC). However, implementation of evidence in clinical practice remains a challenge. First of all, the MS Barometer of EMSP (see http://www.emsp.org/projects/ ms-barometer/) illustrated that many countries lack sufficient specialized so-called tertiary care rehabilitation services for persons with MS, which limits equity of receipt of optimal rehabilitation and care. Access to specialized care was sometimes called a "regional lottery." Also, access to primary care was often poor for persons with MS, who sometimes received the label of chronically disabled, thus relying on social welfare regulations rather than health care. The RIMS organization was originally founded in 1991 as a network of MS centers predominantly at a tertiary care level. The European project MARCH (Multiple Sclerosis And Rehabilitation, Care and Health Services in Europe) had the mission to share clinical expertise in rehabilitation amongst specialized centers in

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Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository

Cited by 6 publications

References 16 publications

Improving Clinical Practice with Person-Centered Outcome Measurement

Improving Clinical Practice with Person-Centered Outcome Measurement

Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!

Guest Editorial

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