Haemophagocytic Lymphohistiocytosis (HLH): Nottingham research studies and patient impact

At the University of Nottingham, following funding from Histio UK https://www.histiouk.org/, we carried out a series of population-based cohort studies to describe the epidemiology of HLH, including the incidence of HLH and survival following diagnosis. We also described the variation by various factors on incidence and mortality. The papers we published can be found here:

https://onlinelibrary.wiley.com/doi/10.1111/bjh.17768

https://onlinelibrary.wiley.com/doi/full/10.1111/joim.13432

https://journals.lww.com/hemasphere/fulltext/2022/11000/temporal_trends_in_the_incidence_of_hemophagocytic.11.aspx

https://jhoonline.biomedcentral.com/articles/10.1186/s13045-023-01434-4

Following publication of our research, the Getting It Right First Time programme in NHS England referenced this work in their best practice pathway and guidance for diagnosis, treatment and management of HLH which can be found here: