Women with Hemophilia: Research Priorities

Women, girls, and those with the potential to menstruate (WGPPM) who live with hemophilia, have more difficulty getting a diagnosis and accessing adequate care than their biological male counterparts. But why? What research is underway to support the needs of these individuals? This episode takes a wide-lens approach to exploring the socio-cultural barriers and gender-related challenges facing WGPPM in the global hemophilia community.

Contributors:

Dawn Rotellini

Andra James, MD, MPH

Connie Miller, PhD

Tyler Buckner, MD

Maureen Baldwin, MD, MPH

Kristin Paulyson Nunez, M.S., C.G.C

Yannick Cole

Senior Advisor:

Donna DiMichele, MD

Episode Advisors:

Angela Weyand, MD

Robert Sidonio, MD

Hosted by:

Laurence Woollard

Links to learn more:

Bercovitz RS. “A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH”: Comment. J Thromb Haemost 2022;20(7):1744-45. DOI: 10.1111/jth.15727

Chaudhury A, et al. Women and girls with haemophilia and bleeding tendencies: Outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review. Haemophilia 2021;27(2):293-304. DOI: 10.1111/hae.14232

d’Oiron R, et al. Women and girls with haemophilia: Lessons learned. Haemophilia 2021;27(S3):75-81. DOI: 10.1111/hae.14094

DiMichele DM, et al. Severe and moderate haemophilia A and B in US females. Haemophilia 2014;20(2):e136-43. DOI: 10.1111/hae.12364

Fox L. Women and girls with hemophilia: Gender-based differences in comprehensive care. NHF Bleeding Disorders Conference 2019. [Online]. Available at: https://www.hemophilia.org/research/research-projects/women-and-girls-with-hemophilia-gender-based-differences-in-comprehensive-care

Kirtava A, et al. Trends in clinical management of women with von Willebrand disease: A survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia 2004;10:158-161. DOI: 10.1046/j.1351-8216.2003.00832.x

Malouin RA, et al. Practice Characteristics of Genetic Counselors Serving the North American Bleeding Disorders Community. [Poster]. World Federation of Hemophilia 2016 World Congress , May 2016.

Miller CH, et al. Women and girls with haemophilia receiving care at specialized haemophilia treatment centres in the United States. Haemophilia 2021;27(6):1037-44. DOI: 10.1111/hae.14403

Rajpurkar M, et al. Current challenges for men and women with mild-to-moderate haemophilia. Haemophilia 2021;27(S1):5-7. DOI: 10.1111/hae.14193

van Galen K, et al. European principles of care for women and girls with inherited bleeding disorders. Haemophilia 2021;27(5):837-47. DOI: 10.1111/hae.14379

van Galen KPM, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. J Thromb Haemost 2021;19(8):1883-87. DOI: 10.1111/jth.15397

Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost 2020;5(1):51-4. DOI: 10.1002/rth2.12468