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Incidence, prevalence and survival in patients with Langerhans cell histiocytosis: A national registry study from England, 2013–2019

Liu, Hanhua; Stiller, Charles A.; Crooks, Colin J.; Rous, Brian; Bythell, Mary; Broggio, John; Rankin, Judith; Nanduri, Vasanta; Lanyon, Peter; Card, Tim R.; Ban, Lu; Elliss-Brookes, Lucy; Broughan, Jennifer M.; Paley, Lizz; Wong, Kwok; Bacon, Andrew; Bishton, Mark; West, Joe


Hanhua Liu

Charles A. Stiller

Brian Rous

Mary Bythell

John Broggio

Judith Rankin

Vasanta Nanduri

Peter Lanyon

Clinical Associate Professor

Lu Ban

Lucy Elliss-Brookes

Jennifer M. Broughan

Lizz Paley

Kwok Wong

Mark Bishton

Professor of Epidemiology


This analysis is the largest population-based study to date to provide contemporary and comprehensive epidemiological estimates of all third edition of the International Classification of Diseases for Oncology (ICD-O-3) coded Langerhans cell histiocytosis (LCH) from England. People of all ages were identified from the National Cancer Registration Dataset using ICD-O-3 morphologies 9751–9754 for neoplasms diagnosed in 2013–2019. A total of 658 patients were identified, of whom 324 (49%) were children aged <15 years. The age-standardised incidence rate was 4.46 (95% confidence interval [CI] 3.99–4.98) per million children and 1.06 (95% CI 0.94–1.18) per million adults aged ≥15 years. Prevalence of LCH was 9.95 (95% CI 9.14–10.81) per million persons at the end of 2019. The 1-year overall survival (OS) was 99% (95% CI 97%–100%) for children and 90% (95% CI 87%–93%) for adults. Those aged ≥60 years had poorer OS than those aged <15 years (hazard ratio [HR] 22.12, 95% CI 7.10–68.94; p < 0.001). People in deprived areas had lower OS than those in the least deprived areas (HR 5.36, 95% CI 1.16–24.87; p=0.03). There will inevitably be other environmental factors and associations yet to be identified, and the continued standardised data collection will allow further evaluation of data over time. This will be increasingly important with developments in LCH management following the large collaborative international trials such as LCH IV.


Liu, H., Stiller, C. A., Crooks, C. J., Rous, B., Bythell, M., Broggio, J., …West, J. (2022). Incidence, prevalence and survival in patients with Langerhans cell histiocytosis: A national registry study from England, 2013–2019. British Journal of Haematology, 199(5), 728-738.

Journal Article Type Article
Acceptance Date Aug 31, 2022
Online Publication Date Sep 19, 2022
Publication Date 2022-12
Deposit Date Sep 5, 2022
Publicly Available Date Sep 19, 2022
Journal British Journal of Haematology
Print ISSN 0007-1048
Electronic ISSN 1365-2141
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 199
Issue 5
Pages 728-738
Keywords Hematology
Public URL
Publisher URL


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