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Project

Towards a shared data repository to enhance the standards of rehabilitation in MS: feasibility, capacity building and proof-of-concept on exercise therapy & mobility measures (R-5516)

Persons with progressive MS show overall more disability than those with relapsing remitting type of MS. Exercise therapy is a potentially effective treatment modality. However, despite an explosion of research on physical rehabilitation and exercise, it is not yet clear whether beneficial effects are equally present in progressive compared to relapsing-remitting type of MS, and to what degree effects are dependent on severity level and the intervention (modality , duration and intensity). Also, it is not well-known which outcome measures are the best to measure changes in mobility that are meaningful to the person with MS. The development of this knowledge, specifically on exercise but also generally on rehabilitation, has been delayed in part by four issues: 1) small sample sizes that do not allow distinction of effects according to MS type or disability level, 2) limited systematic description of the intervention content (so-called 'black box' of rehabilitation), 3) inconsistent inclusion of multi-dimensional outcome measures with insufficient knowledge on their accuracy and values of meaningful change and 4) limited efforts to determine the dosage-response of different rehabilitation strategies. The long-term goal is to provide answers to research questions on the multi-dimensional effects of rehabilitation according to type of MS, disability level as well as intervention content. This project concerns preparing the construction of a large shared data repository that will be established by 1) retrospective data retrieval of individual patient data of published studies and 2) prospective data entry by clinical and research centers by means of a rehabilitation registry. This will allow researchers to investigate questions on the (comparative) effects of specific interventions and settings, or on the appropriateness of different outcome measures. Ultimately, this will lead to improved standards in MS rehabilitation practice. Rehabilitation may be an effective treatment to maintain physical function in progressive MS patients. In contrast to medical registries, a rehabilitation repository does not exist. It is needed to allow the investigation of research questions in large samples of persons with multiple sclerosis, which will ultimately advance the scientific certainty and impact of exercise/rehabilitation studies in MS. This 1-year start-up grant will allow us to investigate 1) the legal regulation of repositories in Europe and the United States , 2) practice examples of existing registries, 3) researcher's perceived barriers and facilitators to data sharing, 4) clinician's willingness and ability to provide data in a registry, 5) engagement of experts to collaborate in workgroups to define the outcome measures for the registry, and opinion on classification systems for treatment. Proof-of-concept studies will be performed in the domain of exercise therapy and mobility outcome measures. Consultation of researchers and clinicians will take place during conferences of supportive international rehabilitation organizations. A platform will be established for information and communication. The project may provide information on effectiveness of exercise therapy in patients with progressive MS within 1 year. In a longer perspective, it may lead to detailed evidence-based guidelines on physical rehabilitation followed by also other domains as upper limb function, speech therapy and cognitive rehabilitation.
Date:1 Aug 2014 →  31 Mar 2016
Keywords:Multiple Sclerosis
Disciplines:Neurosciences, Orthopaedics, Biological and physiological psychology, Cognitive science and intelligent systems, Developmental psychology and ageing