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Characterization of the clinical and laboratory phenotype of hemophilia carriers and trends of utilization of hemostatic therapies: Analysis of the American Thrombosis & Hemostasis Network (ATHN) dataset
Journal article   Open access   Peer reviewed

Characterization of the clinical and laboratory phenotype of hemophilia carriers and trends of utilization of hemostatic therapies: Analysis of the American Thrombosis & Hemostasis Network (ATHN) dataset

Neeraja Swaminathan, Alison Currie, Jianzhong Hu, Roshni Kulkarni, Steven Pipe, Peter Kouides and Anjali Sharathkumar
Research and practice in thrombosis and haemostasis, Vol.9(6), 102994
08/2025
DOI: 10.1016/j.rpth.2025.102994
PMCID: PMC12454875
PMID: 40994888
url
https://doi.org/10.1016/j.rpth.2025.102994View
Published (Version of record) Open Access

Abstract

Hemophilia carriers (HCs) experience varied bleeding tendencies affecting their quality of life, yet their bleeding phenotype and management remain poorly understood. Since majority of the studies in carriers have focused on women of reproductive age, an unmet need exists to characterize their clinical, laboratory phenotype and treatment patterns across the lifespan. We investigated the age-dependent variation of bleeding phenotype, coagulation factor levels, and trends of utilization of factor concentrates and non-factor hemostatic therapies (antifibrinolytics, DDAVP- 1-desamino-8-D-arginine vasopressin) in HCs using the American Thrombosis and Hemostasis Network (ATHN) dataset from 2010 to 2020. The study included 3663 HCs (2728 hemophilia A, 935 hemophilia B) divided into three age groups: 0-12, 13-49, and >50 years. Joint bleeding was prevalent across all ages of HCs. While bleeding events were more frequent among HCs within the reproductive age group, Hemophilia B carriers received factor therapy more frequently than hemophilia A carriers (p=0.033). Factor VIII activity levels in hemophilia A carriers increased significantly with age (p<0.001). Analysis of treatment trends from 2010 to 2020 showed increased utilization of factor concentrates and non-factor hemostatic therapies among HCs (p< 0.001, and p= 0.02, respectively). Our study confirms prior reports of increased bleeding in reproductive-age hemophilia carriers and identifies lifelong joint bleeding risk. While the rising trend in hemostatic therapy use suggests growing awareness of bleeding tendencies, age-dependent increase in factor VIII levels in hemophilia A carriers emphasizes the need for developing tailored management strategies across the lifespan for this population. •Hemophilia carriers experience various types of bleeding•This study focuses on how the bleeding tendencies and factor levels of carriers change with age•Carriers bleed the most during reproductive age and factor levels seem to increase with age.•We found an increased utilization of factor concentrates and hemostatic therapies in carriers.
 Phenotype Hemophilia carriers hemostatic therapies

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