Demographics and disease features of the patients by site at visit 1*
| Measure | All centres | CCHMC | HUMF | KFSH-RC |
| (N=48) | (N=23) | (N=13) | (N=12) | |
| Women | 43 (90%) | 21 (91%) | 12 (92%) | 10 (83%) |
| Age, years | 14. 6±3.6 | 16.3±1.4 | 15.4±3.0 | 10.4±3.9 |
| Disease duration, years | 2.4±2.3 | 2.1±2.0 | 2.4±2.8 | 3.1±2.4 |
| Current medications | ||||
| Hydroxychloroquine | 48 (100%) | 23 (100%) | 13 (100%) | 12 (100%) |
| Prednisone | 34 (71%) | 14 (62%) | 12 (92%) | 8 (67%) |
| Dose (mg/day) | 14.2±16.4 | 19.4±20.4 | 12.3±15.3 | 8.1±5.3 |
| Pulse steroids | 14 (29%) | 2 (9%) | 1 (8%) | 11 (92%) |
| Immunosuppressants† | 44 (92%) | 21 (91%) | 12 (92%) | 11 (92%) |
| Disease activity | ||||
| SLEDAI-total | 8.7±7.3 | 7.2±4.4 | 6.1±5.7 | 14.3±10.4 |
| SLEDAI-MC | 2.3±1.7 | 2.5±1.2 | 1.2±1.5 | 2.8±2.2 |
| CLASI-A | 5.7±7.1 | 3.1±2.7 | 4.5±4.7 | 11.8±11.0 |
| Erythema | 3.0±4.0 | 2.0±2.0 | 2.3±2.7 | 5.8±6.4 |
| Scale/hypertrophy | 1.2±2.3 | 0.2±0.7 | 1.1±1.3 | 3.4±3.6 |
| Mucous membrane | 0.2±0.4 | 0.1±0.3 | 0±0 | 0.4±0.5 |
| Recent hair loss | 0.3±0.5 | 0.2±0.4 | 0.3±0.5 | 0.5±0.5 |
| Non-scarring alopecia | 0.8±1.1 | 0.6±0.9 | 0.5±0.8 | 1.5±1.6 |
| Disease damage | ||||
| SDI-total | 0.7±1.1 | 0.4±0.6 | 0.6±1.2 | 1.3±1.4 |
| SDI-MC | 0.3±0.5 | 0.2±0.4 | 0.2±0.4 | 0.8±0.6 |
| CLASI-D | 3.0±5.8 | 0.6±1.7 | 1.7±2.0 | 8.9±9.0 |
| Dyspigmentation‡ | 2.1±3.8 | 0.4±1.1 | 1.5±1.8 | 6.0±5.7 |
| Scarring/atrophy/panniculitis | 0.5±1.1 | 0.1±0.2 | 0.3±0.8 | 1.4±1.9 |
| Scarring alopecia | 0.5±1.6 | 0.2±0.8 | 0±0 | 1.5±2.7 |
*Values are mean±SD or n (% of N).
†Immunosuppressants (number of patients treated with at least one immunosuppressant) were mycophenolate mofetil, cyclophosphamide, azathioprine, methotrexate, rituximab, leflunomide, belimumab and ciclosporin.
‡Dyspigmentation score is doubled if dyspigmentation usually remains visible for more than 12 months.
CCHMC, Cincinnati Children’s Hospital Medical Center; CLASI, Cutaneous Lupus Erythematosus Disease Area and Severity Index; CLASI-AS, CLASI Activity Score; CLASI-DS, CLASI Damage Score; HUMF, Hacettepe University Faculty of Medicine; KFSH-RC, King Faisal Specialist Hospital and Research Center; SDI, Systemic Lupus International Collaboration Clinics American College of Rheumatology Damage Index; SDI-MC, SDI mucocutaneous domain; SLEDAI, SLE Disease Activity Index; SLEDAI-MC, SLEDAI mucocutaneous domain; cSLE, childhood-onset SLE.