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The summary of the findings from stage 1 (development of the questionnaire) and stage 2 (scoring algorithm) of this comprehensive research is described in Figure 1 and has been published elsewhere ([16,17], also Tolley C et al, unpublished data, 2019). The tool captures different aspects related to disease progression that goes beyond the obvious signs of ambulatory impairment and provides an indication of the current likelihood of progression (Multimedia Appendix 1).
J Med Internet Res 2020;22(2):e16932
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