Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study

Katie Bechman; Mark D. Russell; Kathryn Biddle; Mark Gibson; Maryam Adas; Zijing Yang; Samir Patel; Alex Dregan; Sarah Walsh; Peter Brex; Amit Patel; Katherine J. Myall; Sam Norton; Surinder S. Birring; James Galloway

doi:10.1016/j.lanepe.2025.101283

Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study

Katie Bechman^*, Mark D. Russell, Kathryn Biddle, Mark Gibson, Maryam Adas, Zijing Yang, Samir Patel, Alex Dregan, Sarah Walsh, Peter Brex, Amit Patel, Katherine J. Myall, Sam Norton, Surinder S. Birring, James Galloway

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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The epidemiology of sarcoidosis in England is largely uncharted, with no population-level prevalence data and outdated incidence and mortality estimates.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.

Original language	English
Article number	101283
Pages (from-to)	101283
Journal	The Lancet Regional Health - Europe
Volume	53
DOIs	https://doi.org/10.1016/j.lanepe.2025.101283
Publication status	Accepted/In press - 14 Mar 2025

Keywords

England
Incidence
Mortality
Prevalence
Sarcoidosis

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10.1016/j.lanepe.2025.101283

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Bechman, K., Russell, M. D., Biddle, K., Gibson, M., Adas, M., Yang, Z., Patel, S., Dregan, A., Walsh, S., Brex, P., Patel, A., Myall, K. J., Norton, S., Birring, S. S., & Galloway, J. (Accepted/In press). Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study. The Lancet Regional Health - Europe, 53, 101283. Article 101283. https://doi.org/10.1016/j.lanepe.2025.101283

@article{8fa3218f114f4b8da8f925aa884efe65,

title = "Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study",

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.",

keywords = "England, Incidence, Mortality, Prevalence, Sarcoidosis",

author = "Katie Bechman and Russell, {Mark D.} and Kathryn Biddle and Mark Gibson and Maryam Adas and Zijing Yang and Samir Patel and Alex Dregan and Sarah Walsh and Peter Brex and Amit Patel and Myall, {Katherine J.} and Sam Norton and Birring, {Surinder S.} and James Galloway",

note = "Publisher Copyright: {\textcopyright} 2025 The Authors",

year = "2025",

month = mar,

day = "14",

doi = "10.1016/j.lanepe.2025.101283",

language = "English",

volume = "53",

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Bechman, K , Russell, MD, Biddle, K, Gibson, M , Adas, M , Yang, Z , Patel, S , Dregan, A , Walsh, S, Brex, P, Patel, A , Myall, KJ , Norton, S , Birring, SS & Galloway, J 2025, 'Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study', The Lancet Regional Health - Europe, vol. 53, 101283, pp. 101283. https://doi.org/10.1016/j.lanepe.2025.101283

TY - JOUR

T1 - Incidence, prevalence, and mortality of sarcoidosis in England

T2 - a population-based study

AU - Bechman, Katie

AU - Russell, Mark D.

AU - Biddle, Kathryn

AU - Gibson, Mark

AU - Adas, Maryam

AU - Yang, Zijing

AU - Patel, Samir

AU - Dregan, Alex

AU - Walsh, Sarah

AU - Brex, Peter

AU - Patel, Amit

AU - Myall, Katherine J.

AU - Norton, Sam

AU - Birring, Surinder S.

AU - Galloway, James

PY - 2025/3/14

Y1 - 2025/3/14

N2 - 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.

AB - 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.

KW - England

KW - Incidence

KW - Mortality

KW - Prevalence

KW - Sarcoidosis

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U2 - 10.1016/j.lanepe.2025.101283

DO - 10.1016/j.lanepe.2025.101283

M3 - Article

C2 - 40247851

AN - SCOPUS:105001719708

SN - 2666-7762

VL - 53

SP - 101283

JO - The Lancet Regional Health - Europe

JF - The Lancet Regional Health - Europe

M1 - 101283

ER -

Incidence, prevalence, and mortality of sarcoidosis in England: a population-based study

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