Epidemiological research (studies of the frequency and distribution of different disease characteristics)
Treatment outcome in early diffuse systemic sclerosis (ESOS)
The European Scleroderma Observational Study (ESOS) is an ongoing five-year project comparing the effectiveness of immunosuppressant treatments for early diffuse cutaneous systemic sclerosis in Europe, North America and Australia.
Funded as part of the EULAR Orphan Disease Programme, further details of this project, see: ESOS or the summary below:
- ESOS summary (PDF)
Digital ulcers in systemic sclerosis
Digital ulcers are a common manifestation of vascular abnormality in patients with systemic sclerosis but estimates of incidence and prevalence vary widely, and relatively little is known about the pathophysiology of active digital ulcers.
We set out to estimate the incidence and point prevalence of systemic sclerosis-related active digital ulcers within a single cohort over a 12 month period, as well as assess time to ulcer healing in relation to ulcer location, underlying calcinosis and perfusion. The findings will help us to improve the measurement of digital ulcers in clinical trials, to understand the pathophysiology of ulcer development and to develop novel, local treatments that are both well tolerated and effective.
- Systemic sclerosis-related digital ulcers: influence of location, calcinosis and perfusion on time to healing (PDF)
- Digital ulcers in patients with systemic sclerosis: prevalence, location, nailfold capillaroscopy and functional impact (PDF)
Although very rare, children can develop localised scleroderma and systemic sclerosis.
In collaboration with Dr Eileen Baildam at Alder Hey Children's Foundation Trust we undertook a three-year programme of work funded by the Raynaud's and Scleroderma Association investigating the incidence and clinical features of childhood-onset scleroderma (both localised scleroderma and systemic sclerosis) in the UK and Ireland in conjunction with the British Paediatric Surveillance Unit.
We also carried out a cross-sectional study examining quality of life, physical function and illness perceptions in children with scleroderma.
- Clinical features of childhood scleroderma in an incidence cohort (PDF)
- Assessing the impact of childhood scleroderma on physical function and quality of life (PDF)
- A study of the incidence of childhood scleroderma in the UK and Ireland (PDF)
- Parent and children's beliefs about childhood onset scleroderma (PDF)