The RECORDER team are proud to be part of the UKRI rare disease node: Histionode; led by Prof Matthew Collin at Newcastle University. This study investigates mortality from haemophagocytic lymphohistiocytosis (HLH) across 29 European countries over a 10-year period using anonymised data from national death certificates collated by Eurostat. 

Background

HLH is a rare but often fatal immune disorder that can arise in association with infection, malignancy, or autoimmune disease. By analysing trends across countries, age groups, and time, the project aims to improve understanding of HLH recognition and outcomes across Europe.

Aims

• To describe temporal and geographical trends in HLH mortality across Europe
• To identify differences by age, sex, and country.
• To inform strategies for earlier diagnosis and improved awareness of HLH among clinicians and policymakers

Publications

Gumber L, Omidvar R, Gonnelli F et al. Temporal trends in mortality due to haemophagocytic lymphohistiocytosis (HLH) across 29 European countries over a 10-year period, Lancet Rheumatology (accepted 10 Oct 2025)