Calcinosis Working Group Update

Past projects:

  • Multicenter retrospective study of 5218 patients
  • Prevalence of calcinosis 25%
  • Strong association of calcinosis with digital ulcers (OR=3.7) and osteoporosis (OR=3.9)
  • New radiographic scoring system for calcinosis
  • PRO effort

Current Project/Goals: “A Prospective Study to Identify Risk Factors for Progressive Calcinosis in Patients with Systemic Sclerosis”

  • To define the annual incidence of calcinosis in SSc patients
  • To verify clinical and serologic associations with this complication
  • We also plan to further validate our radiographic scoring system for calcinosis affecting the hands
  • To preliminarily validate Mawdsley questionnaire


Progress to date:

  • We developed a database through REDCap to compare patients with and without calcinosis by collecting relevant clinical information from 60 consecutive SSc patients who fulfill 2013 revised ACR/EULAR criteria at 16 centers at baseline and one year (total N=960).
  • In addition, 8 centers will obtain hand X-rays at baseline and one year in 15 patients with calcinosis (total N=120).
  • All patients with calcinosis will complete the novel Mawdsley calcinosis questionnaire at baseline and one year.
  • 5 sites have obtained IRB approval
  • 2 have begun enrolling patients into the database
  • Information on 33 patients from Stanford University and 3 from Hospital for Special Surgery has been entered into the database thus far
  • We have enrolled 7 patients in the X-ray sub-study.


Next steps:

  • Plan to prospectively collect blood from SSc patients with calcinosis for biomarker analyses
  • Evaluate PAH-specific medications for treatment of calcinosis


How can members get involved? Please contact: