Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate

Maureen K. Baldwin, Department of Obstetrics and Gynecology, Oregon Health and Science University, Portland, Oregon, USA.
Homa K. Ahmadzia, Department of Obstetrics and Gynecology, The George Washington University School of Medicine and Health Sciences, Washington, DC, USA.
Diane L. Bartlett, The Hemophilia Center, St Luke's Hemophilia Center, Boise, Idaho, USA.
Debbie Bensen-Kennedy, CSL Behring, King of Prussia, Pennsylvania, USA.
Vidhi Desai, CSL Behring, King of Prussia, Pennsylvania, USA.
Kristina M. Haley, The Hemophilia Center, Oregon Health and Science University, Portland, Oregon, USA.
Sherry L. Herman-Hilker, Hemophilia and Coagulation Disorders Program, University of Michigan, Ann Arbor, Michigan, USA.
Amanda M. Kilgore, Bleeding and Clotting Disorders Institute, Peoria, Illinois, USA.
Roshni Kulkarni, MSU Center of Bleeding and Clotting Disorders, Department Pediatrics and Human Development, Michigan State University, East Lansing, Michigan, USA.
Michelle Lavin, Irish Centre for Vascular Biology, School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Dublin, Ireland.
Shari Luckey, Hemophilia Foundation of Michigan, Ypsilanti, Michigan, USA.
Kristen A. Matteson, Department of Obstetrics and Gynecology, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USA.
Kristin Paulyson-Nuñez, Duke Health Women & Children's Services, Duke University Health Systems, Durham, North Carolina, USA.
Claire S. Philipp, Division of Hematology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA.
Sachiko Ragosta, Ibis Reproductive Health, Oakland, California, USA.
Kimberly Rosen, Bayer HealthCare Pharmaceuticals, Whippany, New Jersey, USA.
Dawn Rotellini, National Hemophilia Foundation, New York, New York, USA.
Angela C. Weyand, Division of Pediatric Hematology and Oncology, University of Michigan Medical School, Ann Arbor, Michigan, USA.

Document Type

Journal Article

Publication Date

3-1-2023

Journal

Expert review of hematology

Volume

16

Issue

sup1

DOI

10.1080/17474086.2023.2175660

Keywords

Gender disparity; National Hemophilia Foundation; Patient-centered; heavy menstrual bleeding; inherited bleeding disorders; sex disparity

Abstract

BACKGROUND: People who have or had the potential to menstruate (PPM) with inherited bleeding disorders (BD) face particular challenges receiving appropriate diagnosis and care and participating in research. As part of an initiative to create a National Research Blueprint for future decades of research, the National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network conducted extensive all-stakeholder consultations to identify the priorities of PPM with inherited BDs and those who care for them. RESEARCH DESIGN AND METHODS: Working group (WG) 4 of the NHF State of the Science Research Summit distilled community-identified priorities for PPM with inherited BDs into concrete research questions and scored their feasibility, impact, and risk. RESULTS: WG4 identified important gaps in the foundational knowledge upon which to base optimal diagnosis and care for PPM with inherited BDs. They defined 44 top-priority research questions concerning lifespan sex biology, pregnancy and the post-partum context, uterine physiology and bleeding, bone and joint health, health care delivery, and patient-reported outcomes and quality-of-life. CONCLUSIONS: The needs of PPM will best be advanced with research designed across the spectrum of sex and gender biology, with methodologies and outcome measures tailored to this population, involving them throughout.

Department

Obstetrics and Gynecology

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