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Background

Several patient reported outcome measures (PRO’s) have been translated in diverse European languages in the framework of joint data collection multi-center studies investigating psychometric properties of mobility and upper limb function outcome measures. Previous multi-center studies within the RIMS framework resulted already in 7 publications1-7. In case the PRO was unavailable in the required language of a participating center, translations of the PRO’s were performed in a back- and forward translation procedure8. In line with the mission of RIMS, we would like others working in the field of MS rehabilitation to benefit from this valuable work, by enabling free access to the translated questionnaires. We believe that this will help to advance scientific rehabilitation standards.

Some internal agreements (standard operating procedures, SOPs) to enhance harmonization and standardization of prospectively data sharing as part of the multi-center studies within the RIMS network have also been made.

  1. Comparison of the 2- and 6-minute walk test in multiple sclerosis. Mult Scler 2011;17:1269-72.
    Gijbels D, Eijnde BO, Feys P.
  2. Which walking capacity tests to use in multiple sclerosis? A multicentre study providing the basis for a core set. Mult Scler 2012;18:364-71.
    Gijbels D, Dalgas U, Romberg A, de G, V, Bethoux F, Vaney C, Gebara B, Medina CS, Maamagi H, Rasova K, de Noordhout BM, Knuts K, Feys P.
  3. Effect of time of day on walking capacity and self-reported fatigue in persons with multiple sclerosis: a multi-center trial. Mult Scler 2012;18:351-7.
    Feys P, Gijbels D, Romberg A, Santoyo C, Gebara B, de Noordhout BM, Knuts K, Bethoux F, de G, V, Vaney C, Dalgas U.
  4. Within-day variability on short and long walking tests in persons with multiple sclerosis. J Neurol Sci 2014;338:183-7.
    Feys P, Bibby B, Romberg A, Santoyo C, Gebara B, de Noordhout BM, Knuts K, Bethoux F, Sjerbaek A, Jensen E, Baert I, Vaney C, de Groot V, Dalgas U.
  5. Responsiveness and clinically meaningful improvement, according to disability level, of five walking measures after rehabilitation in multiple sclerosis: a European multi-center study. Neurorehabil Neural Repair. 2014;28:621-31.
    Baert I, Freeman J, Smedal T, Dalgas U, Romberg A, Kalron A, Conyers H, Elorrioga I, Gebara B, Gumse J, Heric A, Jensen E, Jones K, Knuts K, Maertens de Noordhout B, Martic A, Normann B, O Eijnde B, Rasova K, Santoyo Medina C, Truyens V, Wens I, Feys P.
  6. Walking capacity and ability are more impaired in progressive compared to relapsing type of multiple sclerosis. European journal of physical and rehabilitation medicine. 2015;51:207-210
    Feys P, Bibby BM, Baert I, Dalgas U.
  7. Prevalence of Walking-Related Motor Fatigue in Persons With Multiple Sclerosis: Decline in Walking Distance Induced by the 6-Minute Walk Test. Neurorehabil Neural Repair. 2015
    Leone, C., D. Severijns, V. Dolezalova, I. Baert, U. Dalgas, A. Romberg, F. Bethoux, B. Gebara, C. Santoyo Medina, H. Maamagi, K. Rasova, B. Maertens de Noordhout, K. Knuts, A. Skjerbaek, E. Jensen, J. M. Wagner, P. Feys.
  8. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: report of the ISPOR Task Force for Translation and Cultural Adaptation. Value.Health, 8, 94-104.
    Wild, D., A. Grove, M. Martin, S. Eremenco, S. McElroy, A. Verjee-Lorenz & P. Erikson (2005)

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