Table 1 Baseline characteristics
|  | New (n = 26) | Chronic (n = 66) | Total (n = 92) |
|---|---|---|---|
Age at baseline years, median (Q1-Q3) | 47.5 (28–59) | 46 (37–55) | 46.5 (36–56) |
Sex, female n (%) | 11 (42%) | 50 (76%) | 61 (66.3%) |
Type of FD a n (%) | |||
 MFD (non-CFD) | 9 (34.6%) | 13 (19.7%) | 22 (23.9%) |
 Isolated CFD | 7 (26.9%) | 9 (13.6%) | 16 (17.4%) |
 PFD | 8 (30.8%) | 29 (43.9%) | 37 (40.2%) |
 MAS | 2 (7.7%) | 15 (22.7%) | 17 (18.5%) |
Skeletal Burden Score b median (Q1-Q3) | 3.2 (0.5–15.8) | 4.8 (1.2–17.1) | 3.2 (1.2–16.9) |
Hospital n (%) | |||
 LUMC c | 25 (96.2%) | 52 (78.8%) | 77 (83.7%) |
 RUMC d | 1 (3.8%) | 14 (21.2%) | 15 (16.3%) |
Referring physician n (%) | |||
 General practitioner | 4 (15.4%) | 10 (15.2%) | 14 (15.2%) |
 Non-academic hospital | 14 (53.8%) | 28 (42.4%) | 42 (45.7%) |
 Academic hospital | 7 (26.9%) | 16 (24.2%) | 23 (25%) |
 Unknown | 1 (3.8%) | 12 (18.2%) | 13 (14.1%) |
Time between surveys years, mean (± SD) | 1.3 (0.4) | 1.2 (0.3) | 1.2 (0.3) |
Treatment history prior to inclusion n (%) | |||
 Bisphosphonates | 16 (61.5%) | 52 (78.8%) | 68 (73.9%) |
 Denosumab | 1 (3.8%) | 19 (28.8%) | 20 (21.7%) |
 Surgery | 7 (26.9%) | 33 (50%) | 40 (43.5%) |
 None of the above | 9 (34.6%) | 8 (12.1%) | 17 (18.5%) |
Treatment during follow-up n (%) | |||
 Bisphosphonates | 15 (57.7%) | 20 (30.3%) | 35 (38%) |
 Denosumab | 1 (3.8%) | 15 (22.7%) | 16 (17.4%) |
 Surgery | 2 (7.7%) | 3 (4.5%) | 5 (5.4%) |
 None of the above | 10 (38.5%) | a32 (48.5%) | 42 (45.7) |