Hand function impairment in systemic sclerosis: Outcomes, Mechanisms and Experience (HANDSOME) study

Nine out of ten people with systemic sclerosis—a chronic autoimmune disease that hardens and tightens the skin and connective tissues—lose function in their hands, making everyday tasks like buttoning a shirt or gripping a pen difficult or impossible. The problem is poorly understood. Contractures, where joints become permanently bent and stiff, affect roughly half of patients, yet no one has tracked how hand function declines over time or what biological processes drive the damage. This study follows a large group of patients, including those with very early-stage disease (VEDOSS), to map the progression of hand impairment and identify its underlying mechanisms. If the research succeeds, it will provide the first clear picture of how and why hand function deteriorates in systemic sclerosis. That knowledge could guide the design of targeted therapies to prevent contractures before they become irreversible, and help clinicians identify which patients need early intervention. For a disease that strikes people in their prime working years, preserving hand function means preserving independence, employment, and quality of life. The study does not test a treatment itself, but it lays the essential groundwork for future clinical trials.