Table 3.

Proposed items for future research. Modified from Khanna, et al. Ann Rheum Dis 2008;67:703–9, with permission.

Research Agenda
  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.
  Serum probrain natriuretic peptide (Pro-BNP) or NT-Pro-BNP
  Noninvasive measures of cardiac function e.g., cardiac MRI, tissue
  Digital ulcers
  Development of digital ulcer condition score that captures activity, severity, and impact
  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
  Large joint contracture
  Michigan Hand Questionnaire
  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.