Table 1 Characteristics of patients recruited up to July 2016 (n = 1636)
Characteristic | Number (%) or mean ± SD |
|---|---|
Patient number | 1636 |
Gender (female:male) | 6.4:1 (86.1% vs 13.9%) |
Race | |
 Caucasian | 1390 (91.9%) |
 Asian | 75 (4.9%) |
 Aboriginal-Islander | 18 (1.2%) |
 Hispanic | 11 (0.7%) |
 Other | 19 (1.3%) |
Age at recruitment, mean ± SD, years | 57.2 ± 12.8 |
Disease duration at recruitmenta, years | 10.9 ± 10.2 |
Recruited within 4 years of first non-Raynaud’s feature | 435 |
Age at diagnosis of PAH if present, years | 62.9 ± 11.1 |
Number of study visits | |
 One | 364 (22.3%) |
 Two | 325 (19.9%) |
 Three | 216 (13.2%) |
 Four | 199 (12.2%) |
 Five | 165 (10.1%) |
 Six | 119 (7.3%) |
 Seven | 71 (4.3%) |
 Eight | 79 (4.8%) |
 Nine | 84(5.2%) |
 Ten | 14 (0.9%) |
Duration of follow up, mean ± SD, years | 3.7 ± 2.7 |
Patient status | |
 Current | 1243 (76.5%) |
 Withdrawn | 101 (6.2%) |
 Dead | 220 (13.5%) |
 Lost to follow up | 61 (3.8%) |
Disease subtype | |
 Limited | 1122 (68.6%) |
 Diffuse | 377 (23.0%) |
 MCTD | 83 (5.3%) |
Autoantibody profile | |
 ANA positive (n = 1508) | 1418 (94.0%) |
 Anti-centromere (n = 1497) | 673 (44.9%) |
 Anti-Scl70 (n = 1483) | 205 (13.8%) |
 Anti-RNAP (n = 794) | 125 (13.1%) |