Patient Experience of Systemic Sclerosis-Related Calcinosis: An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire.

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.

Raising awareness of Raynaud's phenomenon and scleroderma.

The 2005 Raynaud's and scleroderma awareness campaign aims to highlight Raynaud's phenomenon, a common episodic circulatory disorder in which the small blood vessels in the extremities are oversensitive to changes in temperature. For a small number of people, Raynaud's is one of the earliest symptoms of scleroderma, so people with Raynaud's require prompt assessment and diagnosis.