TY - JOUR
T1 - A Cross-Sectional Study of Women and Girls with Congenital Bleeding Disorders
T2 - The American Thrombosis and Hemostasis Network Cohort
AU - Haley, Kristina M.
AU - Sidonio, Robert F.
AU - Abraham, Shirley
AU - Cheng, Dunlei
AU - Recht, Michael
AU - Kulkarni, Roshni
N1 - Publisher Copyright:
© Copyright 2020, Mary Ann Liebert, Inc.
PY - 2020/5/1
Y1 - 2020/5/1
N2 - Introduction: The number of women and girls (WG) with bleeding disorders cared for at hemophilia treatment centers has increased dramatically over the last 30 years, owing to improved recognition of bleeding symptoms specific to WG. However, basic epidemiologic data of this population remain elusive. The ATHNdataset (American Thrombosis and Hemostasis Network) is a surveillance tool for people with bleeding disorders in the United States, providing demographic as well as bleeding symptom and treatment information. The aim of this study was to characterize the female cohort within the ATHNdataset. Methods: In this retrospective cohort study, the ATHNdataset was queried for demographic data, bleeding disorder diagnosis, bleeding symptoms, and treatment. Descriptive statistics were used. Results: As of December 31, 2017, 8,820 WG with a congenital bleeding disorder were enrolled in the ATHNdataset, comprising 24.5% of the entire ATHNdataset cohort (35,945). The most common reported diagnosis was von Willebrand disease (VWD), accounting for 62.9% of the population. Reproductive tract bleeding was reported in 15.8% of participants older than 15 years. Conclusions: The ATHNdataset describes the largest cohort of WG with bleeding disorders to date. VWD is the most common diagnosis in WG with bleeding disorders. Symptoms specific to WG, such as heavy menstrual bleeding, are underreported in this data set compared with other data sources. Ongoing efforts are needed to improve diagnosis, treatment, and surveillance of WG with bleeding disorders.
AB - Introduction: The number of women and girls (WG) with bleeding disorders cared for at hemophilia treatment centers has increased dramatically over the last 30 years, owing to improved recognition of bleeding symptoms specific to WG. However, basic epidemiologic data of this population remain elusive. The ATHNdataset (American Thrombosis and Hemostasis Network) is a surveillance tool for people with bleeding disorders in the United States, providing demographic as well as bleeding symptom and treatment information. The aim of this study was to characterize the female cohort within the ATHNdataset. Methods: In this retrospective cohort study, the ATHNdataset was queried for demographic data, bleeding disorder diagnosis, bleeding symptoms, and treatment. Descriptive statistics were used. Results: As of December 31, 2017, 8,820 WG with a congenital bleeding disorder were enrolled in the ATHNdataset, comprising 24.5% of the entire ATHNdataset cohort (35,945). The most common reported diagnosis was von Willebrand disease (VWD), accounting for 62.9% of the population. Reproductive tract bleeding was reported in 15.8% of participants older than 15 years. Conclusions: The ATHNdataset describes the largest cohort of WG with bleeding disorders to date. VWD is the most common diagnosis in WG with bleeding disorders. Symptoms specific to WG, such as heavy menstrual bleeding, are underreported in this data set compared with other data sources. Ongoing efforts are needed to improve diagnosis, treatment, and surveillance of WG with bleeding disorders.
KW - bleeding disorders
KW - heavy menstrual bleeding
KW - hemophilia
KW - hemophilia carrier
KW - hemophilia treatment centers
KW - von Willebrand disease
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U2 - 10.1089/jwh.2019.7930
DO - 10.1089/jwh.2019.7930
M3 - Article
C2 - 31905045
AN - SCOPUS:85084784556
SN - 1540-9996
VL - 29
SP - 670
EP - 676
JO - Journal of Women's Health
JF - Journal of Women's Health
IS - 5
ER -