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Table 1 Participant Characteristics

From: Patient and caregiver perspectives on guideline adherence: the case of endocrine and bone health recommendations for Duchenne muscular dystrophy

 Participated in at least 1 round % (n = 95)Participated in Round 1 (n = 88)Participated in Round 2 (either viewed or posted) (n = 74)Participated in Round 3 (n = 56)
Participant Type
 Caregiver71 (75%)65 (74%)58 (78%)43 (77%)
 Individual with DMD24 (25%)23 (26%)16 (22%)13 (23%)
Gender
 Female59 (62%)53 (60%)47 (64%)35 (63%)
 Male36 (38%)35 (40%)27 (36%)21 (37%)
Hispanic/Latino/Spanisha
 Yes4 (4%)2 (2%)3 (4%)1 (2%)
 No90 (96%)85 (98%)70 (96%)54 (98%)
Race
 White86 (91%)82 (93%)67 (91%)52 (93%)
 Black/African American1 (1%)1 (1%)1 (1%)0 (0%)
 Asian4 (4%)3 (3%)4 (5%)4 (7%)
 Multi-race1 (1%)0 (0%)1 (1%)0 (0%)
 Other3 (3%)2 (2%)1 (1%)0 (0%)
How far do you usually travel to receive neuromuscular care?a
  < 50 miles38 (41%)37 (44%)30 (41%)25 (46%)
 50–99 miles22 (24%)20 (24%)16 (22%)12 (22%)
 100–249 miles17 (19%)13 (15%)14 (19%)8 (15%)
  ≥ 250 miles15 (16%)15 (18%)13 (18%)9 (17%)
  1. There were no statistically significant differences between participants and non-participants in different rounds as measured by Fisher’s exact test
  2. a Not all participants provided responses to this question