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Table 3 Completion of Adult questionnaires at baseline and 6 months by diagnosis

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

Diagnosis

Baseline

6 months

 

EQ5D

SF36

EQ5D

SF36

Osteogenesis imperfecta

40/71 (56 %)

38/71 (54 %)

21/36 (58 %)

22/36 (61 %)

Fibrous Dysplasia

40/59 (68 %)

38/59 (64 %)

19/28 (68 %)

17/28 (61 %)

X-LH

24/30 (80 %)

22/30 (69 %)

15/22 (68 %)

Hypophosphatasia

3/7 (43 %)

1/2 (50 %)

Melorheostosis

2/2 (100 %)

0/0

Eosinophilic granulomatosis with polyangiitis

14/23 (61 %)

13/23 (56 %)

9/12 (75 %)

Granulomatosis with polyangiitis

33/50 (65 %)

25/31 (81 %)

27/31 (87 %)

Microscopic polyangiitis

9/14 (69 %)

4/7 (57 %)

6/7 (86 %)

Polyarteritis nodosa

2/3 (67 %)

1/2 (50 %)

2/2 (100 %)

Takayasu arteritis

5/6 (83 %)

4/5 (80 %)

  1. Number of completed per number of submitted questionnaires by disease group shown, with percentages in parenthesis