National mortality and years of potential life lost due to hemophilia in Iran, 2014–2025: A registry-based study

Introduction: Hemophilia is a rare inherited bleeding disorder associated with premature mortality, particularly where access to comprehensive care is limited. Nationwide evidence on mortality and premature mortality in Iran remains scarce.

Aim: To estimate mortality, Years Of Potential Life Lost (YPLL), and temporal and geographical patterns of hemophilia-related deaths in Iran, 2014–2025.

Methods: This registry-based epidemiological study used Iran’s National Death Registration System to identify deaths coded D66, D67, or D68.1 between January 2014 and December 2025. Mortality rates, Age-Standardized Mortality Rates (ASMR), and YPLL were calculated using national population data. Temporal trends were assessed using poisson and population-weighted linear regression, and provincial patterns were visualized using choropleth maps.

Results: A total of 93 hemophilia-related deaths were identified (median age: 37.62 years; IQR: 19.20–57.84; 66.67% male). Hemophilia A accounted for 84.95% of deaths. Hemorrhagic causes predominated (54.84%), followed by cardiovascular (17.20%), hepatic/respiratory (10.75%), and infectious causes (8.60%). Mortality peaked in 2015 (0.165 per million; ASMR: 0.167) and was 0.058 per million (ASMR: 0.054) in 2025 (APC: −2.67%; 95% CI: −8.45 to 3.12; p=0.373). YPLL rates ranged from 1.116 to 5.708 per million, with the highest rate in 2015. Provincial variation was substantial, with the highest cumulative YPLL observed in Ilam and South Khorasan.

Conclusion: Hemophilia-related mortality in Iran represents a substantial burden of premature mortality, with bleeding-related and non-bleeding causes both contributing. Integrating YPLL with mortality indicators and strengthening geographic and clinical surveillance may support targeted health-service planning and strategies to reduce premature mortality.

Keywords: Hemophilia; Mortality; Years Of Potential Life Lost; Iran; Epidemiology.

Mahin Ghavami is an M.Sc. student in epidemiology at Mashhad University of Medical Sciences, Iran. Her research interests include epidemiological methods, population health, disease burden, mortality, and health outcomes research. She has experience in registry-based and population-based epidemiological studies, and is particularly interested in translating epidemiological evidence into meaningful public health insights. Her current research focuses on mortality and years of potential life lost due to hemophilia in Iran using national registry data. She is also actively involved in academic and research activities in the field of epidemiology and public health.