Table 2.
Proposed items for future research
| Research agenda | Median (IQR) | |
|---|---|---|
| Skin: | ||
| 1 | Measure of telangiectasia | 5 (3–7) |
| 2 | Visual analogue scale (VAS) or/Likert patient global assessment for pruritus | 7 (5–8) |
| Musculoskeletal: | ||
| 1 | Large joint contracture | 7 (4–8) |
| 2 | Michigan Hand Questionnaire18 | 7 (6–8) |
| Cardiac: | ||
| 1 | Serum pro-brain natriuretic peptide (Pro-BNP) or NT-Pro-BNP | 7 (6–8) |
| 2 | Non-invasive measures of cardiac function, eg, cardiac magnetic resonance imaging, tissue Doppler | 7 (6–8) |
| Gastrointestinal: | ||
| 1 | Scleroderma gastrointestinal 1.0 questionnaire3 | 8 (7–9) |
| 2 | Gastric emptying time and/or 24-h small bowel transit time | 7 (6–8) |
| Health-related quality of life and function: | ||
| 1 | Measure of health utility eg, Short Form-6D (SF-6D), EuroQol, Quality of Well Being Scale, time trade-off, standard gamble | 7 (7–9) |
| 2 | Measure of fatigue, eg, functional assessment of chronic illness therapy (FACIT)-fatigue | 7 (5–8) |
| 3 | Measure of depression/anxiety, eg, Beck Depression Inventory, Center for Epidemiologic Depression Scale | 6 (5–8) |
| Global health: | ||
| 1 | Medsger Severity Index29 | 7 (5–8) |
| Digital ulcers | ||
| 1 | Development of digital ulcer condition score that captures activity, severity, and impact | 7 (6.5–9) |
| Biomarkers: | ||
| 1 | Markers 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 collagen | 7 (5–8) |
IQR, interquartile range.