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.

* We have enrolled 560 patients from 10 centers within the US, Mexico, Canada and Australia

* 112 have completed 1 year follow-up

* 34% prevalence of calcinosis in this cohort. Incidence of calcinosis 0.05%

* Analysis of baseline data confirmed clinical associations between calcinosis and risk factors from retrospective study

* Detailed information available on burden, location, and complications of calcinosis    


Next steps:

* Complete 1-year follow-up at all sites

  • Complete XR sub-study and assess sensitivity to change of radiographic scoring system
  • Assess construct validity and sensitivity to change of Mawdsley calcinosis questionnaire

How can members get involved? Please contact:

* Dr. Lorinda Chung (

* Dr. Antonia Valenzuela (