Retrospective audit of access to care for children and young people diagnosed with localised scleroderma or juvenile systemic sclerosis in the United Kingdom

Purpose Localised scleroderma (LS) and juvenile systemic sclerosis (jSSc) are very rare paediatric diseases managed by paediatric rheumatologists and dermatologists[1]. Optimal treatment is controversial in the absence of clinical trials, but most paediatric rheumatologists advocate systemic immunosuppression to avoid progressive deformity, functional disability and disfigurement[2]. We aimed to describe pathways through which children and young people receive a diagnosis of LS or jSSc, and to document these pathways from the time the first symptom was noticed by the patient or their family, through to the time when a diagnosis of LS or jSSc was first considered. We also aimed to document the health care professionals involved in these pathways to diagnosis.