TY - JOUR
T1 - Building the foundation for a community-generated national research blueprint for inherited bleeding disorders
T2 - research to advance the health of people with inherited bleeding disorders with the potential to menstruate
AU - Baldwin, Maureen K.
AU - Ahmadzia, Homa K.
AU - Bartlett, Diane L.
AU - Bensen-Kennedy, Debbie
AU - Desai, Vidhi
AU - Haley, Kristina M.
AU - Herman-Hilker, Sherry L.
AU - Kilgore, Amanda M.
AU - Kulkarni, Roshni
AU - Lavin, Michelle
AU - Luckey, Shari
AU - Matteson, Kristen A.
AU - Paulyson-Nuñez, Kristin
AU - Philipp, Claire S.
AU - Ragosta, Sachiko
AU - Rosen, Kimberly
AU - Rotellini, Dawn
AU - Weyand, Angela C.
N1 - Publisher Copyright:
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
KW - Gender disparity
KW - National Hemophilia Foundation
KW - Patient-centered
KW - heavy menstrual bleeding
KW - inherited bleeding disorders
KW - sex disparity
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U2 - 10.1080/17474086.2023.2175660
DO - 10.1080/17474086.2023.2175660
M3 - Article
C2 - 36920864
AN - SCOPUS:85150389469
SN - 1747-4086
VL - 16
SP - 71
EP - 86
JO - Expert Review of Hematology
JF - Expert Review of Hematology
IS - sup1
ER -