Browsing by Author "Fligelstone, Kim"

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    Moving forward together: collaborative landscapes of research in idiopathic inflammatory myopathies and calcinosis
    (Oxford Univ. Press, 2023) Saketkoo, Lesley Ann; Valenzuela Vergara, Antonia Maria; Kim, Susan; McCann, Liza J.; Lood, Christian; Wahezi, Dawn M.; Werth, Victoria P.; Yi, Belina; Alexanderson, Helene; Maillard, Susan; Pilkington, Clarissa; Fligelstone, Kim; Limbach, Barbara; Orandi, Amir B.; Regardt, Malin; Russell, Anne-Marie; Davuluri, Srijana; deGroot, Ingrid; Ernste, Floranne; Paik, Julie J.; von Muhlen, Carlos A.; Dimachkie, Mazen M.; Machado, Pedro M.; Naddaf, Elie; Shafranski, Barbara M.; Gupta, Latika; Zulian, Francesco; Chung, Lorinda; International Myositis Assessment and Clinical Studies Group and The Myositis International Research and Health Collaborative Alliance (IMACS/ MIHRA) Calcinosis Scientific Interest Group
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    Patient Experience of Systemic Sclerosis-Related Calcinosis An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire
    (2023) Saketkoo, Lesley Ann; Gordon, Jessica K.; Fligelstone, Kim; Mawdsley, Anne; Chaudhry, Humza A.; Valenzuela, Antonia; Christensen, Angela; Khalique, Samara M.; Jensen, Kelly; Weinmann, Sophia C.; Busman, Evan; Chung, Lorinda; Hsu, Vivien M.; Russell, Anne-Marie; Steen, Virginia D.
    The patient experience of SSc-calcinosis was explored iteratively in a diverse and repre-sentative international cohort, reaching concept saturation. Pervasive disability, frustra-tion, symptom distress, and uncertainty created largely by complex, severe pain sensations are related to daily living with SSc-calcinosis. Patient observations and self-management behavior provide opportunities to educate clinicians and patients. Pa-tients are eager for self-management guidance. This investigation informed the develop-ment of a novel PROM, the MCQ, developed according to FDA guidance20,21 to assess the severity and impact of SSc-calcinosis for use in clinical studies and clinical practice. Further validation and translation studies of the MCQ are underway.