Proposed items for future research. Modified from Khanna, et al. Ann Rheum Dis 2008;67:703–9, with permission.
| Research Agenda |
|---|
| Biomarkers |
| Markers of the collagen breakdown e.g., soluble IL-2 receptor levels, procollagen I and III aminopropeptide, CTGF levels, serum collagen I carboxyterminal telopeptide, urinary pyridinoline cross-link compounds of collagen, etc. |
| Cardiac |
| Serum probrain natriuretic peptide (Pro-BNP) or NT-Pro-BNP |
| Noninvasive measures of cardiac function e.g., cardiac MRI, tissue |
| Doppler |
| Digital ulcers |
| Development of digital ulcer condition score that captures activity, severity, and impact |
| Gastrointestinal |
| Scleroderma-gastrointestinal 1.0 questionnaire |
| Gastric emptying time and/or 24-h small bowel transit time |
| Global Health |
| Medsger Severity Index |
| Health-related Quality of Life and Function |
| Measure of health utility e.g., SF-6D, EuroQol, Quality of Well Being Scale, time trade-off standard gamble |
| Measure of fatigue e.g., Functional assessment of chronic illness therapy (FACIT)-Fatigue |
| Measure of depression/anxiety e.g., Beck Depression Inventory, Center for Epidemiologic-Depression Scale |
| Musculoskeletal |
| Large joint contracture |
| Michigan Hand Questionnaire |
| Skin |
| Measure of telangiectasia |
| VAS/Likert patient global assessment for pruritus |
IL-2: interleukin 2; CTGF: connective tissue growth factor; SF-6D: Medical Outcome Study Short Form 6D; FACIT: Functional assessment of chronic illness therapy; VAS: visual analog scale.