Lesley Ann Saketkoo, Jessica K Gordon, Kim Fligelstone, Anne Mawdsley, Humza A Chaudhry, Antonia Valenzuela, Angela Christensen, Samara M Khalique, Kelly Jensen, Sophia C Weinmann, Evan Busman, Lorinda Chung, Vivien M Hsu, Anne-Marie Russell, Virginia D Steen
Journal: Rheumatic diseases clinics of North America 2023;49(2):463-481
PMID: 37028847
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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