Women with Hemophilia: Research Priorities

18/08/2022 1h 37min Temporada 1 Episodio 6
Women with Hemophilia: Research Priorities

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Episode Synopsis

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   Show Notes: Presenting Sponsor: Sanofi Subscribe to the Global Hemophilia Report   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  Listen to the FLOW podcast