The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases

Table 2 Baseline and 6 months completion of patient reported outcomes questionnaires

Domain	Questionnaire	Baseline (%)	6 months (%)
Quality of Life	EQ-5D 5 L	215/370 (58)	124/181 (69)
	SF-36	207/370 (56)	128/181 (71)
Pain	McGill Long	210/370 (57)	123/181 (68)
	Pain detect	200/370 (54)	129/181 (72)
Activities of Daily Living	Nottingham ADL	219/370 (59)	124/181 (69)
Sleep	Pittsburgh Sleep Quality Index	209/370 (57)	124/181 (69)
Fatigue^a	FACIT-Fatigue	93/212 (44)	135/181 (75)
Depression^a	Hospital Anxiety and Depression Scale	94/212 (44)	123/181 (68)

Participants were scheduled for the 6 months questionnaires after completing at least one questionnaire at baseline
^aThese two questionnaires were introduced after a substantial amendment and those participants who had already completed a baseline questionnaire had these questionnaires scheduled with their next assessment at 6 months

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