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Who Runs the World? Highlighting Research on Women and Girls With Bleeding Disorders

December 10, 2023
Hilary Whitworth, MD, MSCE (@HilaryWhitworth) 
Division of Hematology, Children’s Hospital of Philadelphia, Philadelphia, PA

In the year of Barbie, Beyoncé, and Taylor Swift, ASH cannot be left behind when it comes to highlighting the strength and significance of women. Recognition of women with hemophilia and other bleeding disorders has continued to increase in recent years, with a heightened emphasis on diagnosis and management. As more institutions implement dedicated multidisciplinary clinics for women with bleeding disorders, opportunities for research and improved clinical care have begun to increase in turn. The oral abstracts at this year’s annual meeting highlighted this previously understudied population through a number of excellent talks.  

Yesterday’s morning session Disorders of Coagulation and Fibrinolysis: Clinical and Epidemiological: Out of the Box: Acquired, Vascular and Other Neglected Bleeding Disorders included two relevant abstracts highlighting women. Ellen Zhang, MD, presented her team’s work “Hereditary Hemorrhagic Telangiectasia May be the Most Clinically Significant and Morbid Inherited Bleeding Disorder of Women.” She described the population characteristics, bleeding outcomes, and healthcare utilization of 200 age-matched women at her institution with hereditary hemorrhagic telangiectasia (HHT) or von Willebrand disease (VWD). Dr. Zhang and her team found that iron deficiency anemia was more severe and was associated with greater treatment requirements in women with HHT than in those with VWD. Moreover, women with HHT had more emergency department visits, admissions, and outpatient encounters than those with VWD. These results support the need for more funding and increased focus on this historically neglected HHT population.   

In the same session, Rachel S. Kronenfeld, MD, presented the abstract “Characterization of Joint Disease in Women with Hemophilia: The Carriers Ultrasound Project (CUP) Study.” It summarized her team’s multi-institutional, cross-sectional study which aimed to decrease the knowledge gap surrounding joint health in women with hemophilia. Dr. Kronenfeld and her colleagues evaluated clinical symptoms and performed radiological joint assessments in a cohort of women with hemophilia as well as a control cohort. Carriers and women with hemophilia reported more joint symptoms and had higher Hemophilia Joint Health Scores (HJHS) than controls, although there was no significant difference in ultrasound scores. There was no difference in HJHS between carriers with baseline factor levels under and over 40%, highlighting the importance of screening for joint symptoms in women with hemophilia, regardless of factor level.  

Before we can screen for and treat bleeding symptoms in women with bleeding disorders, we must identify and diagnose them accurately. Luckily, Evelien Krumb, MD, presented the work of her team to improve diagnosis of hemophilia carrier status. “Proactive Systematic Hemophilia Carrier Screening: A Step Towards Gender Equity in Hemophilia Care” described the systematic screening project to identify previously unscreened female relatives of currently followed patients at her institution. At the time of this writing, only 44% of the cohort had been screened, emphasizing the challenges in identifying and providing care to women who may have an underlying diagnosis of hemophilia and benefit from understanding their carrier status.  

Finally, to improve clinical care and deepen our understanding of bleeding disorders in women, we must continue to do research. Doing their part, Ming Y. Lim, MBBChir, and colleagues will present a way to better identify pregnant women with inherited bleeding disorders (IBD), which will allow for more accurate identification for research and clinical care. Their work “Developing an Algorithm to Better Identify Pregnant Women with Inherited Bleeding Disorders within Electronic Health Records” will be presented in today’s session, Health Services and Quality Improvement – Non-Malignant Conditions: Raising the bar in Anemia, Bleeding, and Thrombotic Disorders (4:30 p.m. – 6:30 p.m., Marriott Marquis San Diego Marina, Pacific Ballroom, Salons 15-17). Dr. Lim will detail an algorithm developed by her group, which has a high sensitivity and positive predictive value for accurate identification of pregnant women with IBD and is expected to facilitate future population-based research in this population.  

I am inspired by the exciting research presented here that moves the field toward improved recognition and treatment of bleeding in women and sets us up to continue narrowing the gender gap. Karma is the science on the field, coming straight home to ASH! 

Dr. Whitworth indicated no relevant conflicts of interest. 


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