A Cross-Sectional Study of Women and Girls with Congenital Bleeding Disorders: The American Thrombosis and Hemostasis Network Cohort

Kristina M. Haley, Robert F. Sidonio, Shirley Abraham, Dunlei Cheng, Michael Recht, Roshni Kulkarni

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)670-676
Number of pages7
JournalJournal of Women's Health
Volume29
Issue number5
DOIs
StatePublished - May 1 2020

Keywords

  • bleeding disorders
  • heavy menstrual bleeding
  • hemophilia
  • hemophilia carrier
  • hemophilia treatment centers
  • von Willebrand disease

ASJC Scopus subject areas

  • Medicine(all)

Fingerprint Dive into the research topics of 'A Cross-Sectional Study of Women and Girls with Congenital Bleeding Disorders: The American Thrombosis and Hemostasis Network Cohort'. Together they form a unique fingerprint.

Cite this