Abstract

BACKGROUND: The epidemiology of sarcoidosis in England is largely uncharted, with no population-level prevalence data and outdated incidence and mortality estimates. Our objective was to investigate contemporary trends in incidence, prevalence, and mortality. METHODS: This cohort study used primary care data from the UK Clinical Practice Research Datalink (CPRD), linked to secondary-care and national death registration. Patients aged ≥18 with sarcoidosis were identified using primary care codes. Age-and-sex standardised incidence and prevalence were calculated. Standardised mortality ratios (SMRs) compared mortality with the general population. A matched non-sarcoidosis cohort was constructed within CPRD, and Poisson regression compared all-cause mortality between incident cases and controls. FINDINGS: Between 2003 and 2023, 18,554 incident sarcoidosis patients were identified. The age- and sex-standardised incidence per 100,000 person-years increased from 6.65 in 2003 to 7.73 in 2023, with the most pronounced rise occurring between 2010 and 2016. Incidence rose notably among males and those over 60-year-olds. Sarcoidosis prevalence increased from 167 to 230 per 100,000 individuals. The age-and-sex standardised all-cause mortality rate was 12.2 per 1000 patients in 2023. Elevated mortality was observed in males [SMR: 1.8 (1.7-1.8)] and females [SMR: 2.1(2.0-2.2)], particularly in those aged 30-70 years old. Regression models indicated higher all-cause mortality in the incident sarcoidosis cohort compared to controls [adjusted mortality rate ratio 1.36 (95% CI 1.27-1.44)]. INTERPRETATION: Sarcoidosis incidence has increased during the study period, with shifts in age-and-sex distribution and excess mortality risk. Recognising this burden is key to refining healthcare policies, optimising resources and improving patient outcomes. FUNDING: None.