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Updated: Aug 3, 2025

Imaging Features of Systemic Sclerosis-Associated Interstitial Lung Disease
Published on: June 16, 2020
Patient Experience of Systemic Sclerosis-Related Calcinosis: An International Study Informing Clinical Trials,
Lesley Ann Saketkoo1, Jessica K Gordon2, Kim Fligelstone3
1New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA; University Medical Center-Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, LA, USA; Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA, USA; Tulane University School of Medicine, New Orleans, LA, USA.
Abstract:
Systemic sclerosis (SSc) -related calcinosis can be a debilitating, constantly painful, poorly understood vascular complication of calcium hydroxyapatite deposition in soft tissue structures that affects approximately 40% of both limited and diffuse cutaneous SSc subtypes. This publication describes the iterative and multitiered international qualitative investigations that yielded remarkable insights into natural history, daily experience, and complications of SSc-calcinosis providing pivotal information for health management. Patient-driven question development and field testing, according to Food and Drug Administration guidance, propelled the development of a patient-reported outcome measure for SSc-calcinosis, the Mawdsley Calcinosis Questionnaire.
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