Sarcoidosis in the UK: Insights from the BTS interstitial lung disease registry

Introduction: Sarcoidosis makes up a third of ILD cases seen in UK chest clinics. Primary care data suggest an incidence of 3 per 100,000 person years. In 2013 BTS set up a Sarcoidosis Registry: an ongoing longitudinal UK database with epidemiological, demographic and clinical outcome data. We present an overview of the data collected up until 1st February 2016. Methods: Participation in the Registry is open to all UK-based Chest physicians. All enrolled patients provide written informed consent. Data are entered onto a bespoke web-based platform. Inclusion criteria are a new diagnosis of sarcoidosis from 1 Jan 2013, or a historical diagnosis in those with sequelae of, or active disease, newly seen from 1 Jan 2013. Information collected covers symptoms, referral and diagnostic trends, physiology and therapy; with follow-up data collected annually. Results: By 1 Feb 2016, 38 centres had contributed 211 records (37% female; mean age 49). The commonest presenting symptoms were dyspnoea (54%), cough (49%), fatigue (35%) and arthralgia (17%). In 31%, the diagnosis was incidental. In 61%, diagnosis was supported by biopsy (80% lung, 7% extra-thoracic nodes and 6% skin). 17% of patients had extra-pulmonary disease including liver (17%). Since January 2013 the use of endobronchial ultrasound-guided trans-bronchial needle aspiration has increased. The commonest treatments were systemic and inhaled corticosteroids, and methotrexate. Conclusions: The BTS Sarcoidosis Registry provides important early insights into the epidemiology, diagnostic strategies and management of UK sarcoidosis patients. The data are expected to promote improved clinical care through national benchmarking and support for quality improvement.