Sarcoidosis in the United Kingdom: Findings from the first decade of the UK ILD Registry

Introduction: Sarcoidosis is a multi-system granulomatous disease, with significant heterogeneity in many aspects of the disease. We reviewed 10y database from the British Thoracic Society UK ILD Registry and present salient findings on demographics, management and clinical symptoms.

Methods: Participating centres entered data onto a central electronic database between 1 January 2013 and 19 February 2023. Informed consent was obtained by all participants. A cross-sectional descriptive analysis was undertaken.

Results: Data were available from 937 unique cases from 50 centres. There was a male preponderance (60%); mean age 52.7y (± 26.9). The cohort was predominantly white (65%). Black patients formed 7% of the cohort compared to 3% of the national population of the UK. Systemic hypertension affected 21% of patients, and diabetes 16%, while almost two thirds had no reported comorbidities. Over 10 years, the proportion of cases where at least one biopsy was obtained remained largely consistent (93%); and during that time the use of endobronchial ultrasound (EBUS) rose from 38% to 64%. Less than half of patients experienced breathlessness and cough (45% and 41%) and 26% experienced fatigue, which can impact daily activities. At presentation 46% of patients were prescribed systemic corticosteroids; 42% were not treated, 1 in 4 patients was referred or signposted to other support (such as patient support groups or mental health support) and 2% were in clinical trials.

Conclusion: These data provide a snapshot of clinical practice across ILD centres in the UK over the last decade which could be used as a basis for further work in improving the management of patients with sarcoidosis.