Patient Experience of Systemic Sclerosis-Related Calcinosis: An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire. Rheumatic diseases clinics of North America Saketkoo, L. A., Gordon, J. K., Fligelstone, K., Mawdsley, A., Chaudhry, H. A., Valenzuela, A., Christensen, A., Khalique, S. M., Jensen, K., Weinmann, S. C., Busman, E., Chung, L., Hsu, V. M., Russell, A. M., Steen, V. D. 2023; 49 (2): 463-481


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.

View details for DOI 10.1016/j.rdc.2023.01.017

View details for PubMedID 37028847