Table 2 Proposed items for future research
Research agendaMedian (IQR)
Skin:
1Measure of telangiectasia5 (3–7)
2Visual analogue scale (VAS) or/Likert patient global assessment for pruritus7 (5–8)
Musculoskeletal:
1Large joint contracture7 (4–8)
2Michigan Hand Questionnaire187 (6–8)
Cardiac:
1Serum pro-brain natriuretic peptide (Pro-BNP) or NT-Pro-BNP7 (6–8)
2Non-invasive measures of cardiac function, eg, cardiac magnetic resonance imaging, tissue Doppler7 (6–8)
Gastrointestinal:
1Scleroderma gastrointestinal 1.0 questionnaire38 (7–9)
2Gastric emptying time and/or 24-h small bowel transit time7 (6–8)
Health-related quality of life and function:
1Measure of health utility eg, Short Form-6D (SF-6D), EuroQol, Quality of Well Being Scale, time trade-off, standard gamble7 (7–9)
2Measure of fatigue, eg, functional assessment of chronic illness therapy (FACIT)-fatigue7 (5–8)
3Measure of depression/anxiety, eg, Beck Depression Inventory, Center for Epidemiologic Depression Scale6 (5–8)
Global health:
1Medsger Severity Index297 (5–8)
Digital ulcers
1Development of digital ulcer condition score that captures activity, severity, and impact7 (6.5–9)
Biomarkers:
1Markers of the collagen breakdown, eg, soluble interleukin (IL)2 receptor levels, procollagen I and III aminopropeptide, connective tissue growth factor (CTGF) levels, serum collagen I carboxyterminal telopeptide, urinary pyridinoline cross-link compounds of collagen7 (5–8)
  • IQR, interquartile range.