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Expert Review of Hematology Volume 16, 2023 - Issue sup1: The National Hemophilia Foundation’s State of the Science Research Summit: Building the foundation for a community-generated national blueprint for future research in inherited bleeding disorders
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Original Research

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. Baldwina Department of Obstetrics and Gynecology, Oregon Health and Science University, Portland, Oregon, USACorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0001-7773-6428View further author information
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Homa K. Ahmadziab Department of Obstetrics and Gynecology, The George Washington University School of Medicine and Health Sciences, Washington, DC, USAORCID Iconhttps://orcid.org/0000-0003-0341-1086View further author information
ORCID Icon,
Diane L. Bartlettc The Hemophilia Center, St Luke’s Hemophilia Center, Boise, Idaho, USAView further author information
,
Debbie Bensen-Kennedyd CSL Behring, King of Prussia, Pennsylvania, USAView further author information
,
Vidhi Desaid CSL Behring, King of Prussia, Pennsylvania, USAView further author information
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Kristina M. Haleye The Hemophilia Center, Oregon Health and Science University, Portland, Oregon, USA;f Department of Pediatrics, Oregon Health and Science University, Portland, Oregon, USAORCID Iconhttps://orcid.org/0000-0003-4801-843XView further author information
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Sherry L. Herman-Hilkerg Hemophilia and Coagulation Disorders Program, University of Michigan, Ann Arbor, Michigan, USAView further author information
,
Amanda M. Kilgoreh Bleeding and Clotting Disorders Institute, Peoria, Illinois, USAView further author information
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Roshni Kulkarnii MSU Center of Bleeding and Clotting Disorders, Department Pediatrics and Human Development, Michigan State University, East Lansing, Michigan, USAORCID Iconhttps://orcid.org/0000-0001-9372-3184View further author information
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Michelle Lavinj Irish Centre for Vascular Biology, School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Dublin, Ireland;k National Coagulation Centre, St. James’s Hospital, Dublin, IrelandORCID Iconhttps://orcid.org/0000-0003-2999-4216View further author information
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Shari Luckeyl Hemophilia Foundation of Michigan, Ypsilanti, Michigan, USAView further author information
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Kristen A. Mattesonm Department of Obstetrics and Gynecology, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USAView further author information
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Kristin Paulyson-Nuñezn Duke Health Women & Children’s Services, Duke University Health Systems, Durham, North Carolina, USAView further author information
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Claire S. Philippo Division of Hematology, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, USAORCID Iconhttps://orcid.org/0000-0001-6803-7123View further author information
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Sachiko Ragostap Ibis Reproductive Health, Oakland, California, USAORCID Iconhttps://orcid.org/0000-0002-2776-0638View further author information
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Kimberly Rosenq Bayer HealthCare Pharmaceuticals, Whippany, New Jersey, USAView further author information
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Dawn Rotellinir National Hemophilia Foundation, New York, New York, USAORCID Iconhttps://orcid.org/0000-0003-3354-3880View further author information
ORCID Icon &
Angela C. Weyands Division of Pediatric Hematology and Oncology, University of Michigan Medical School, Ann Arbor, Michigan, USAORCID Iconhttps://orcid.org/0000-0003-2595-8541View further author information
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Pages 71-86 | Received 07 Dec 2022, Accepted 30 Jan 2023, Published online: 15 Mar 2023

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Leonard A. Valentino. (2023) Foreword: a special focus on bleeding disorders. Expert Review of Hematology 16:6, pages 389-389.
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Vanessa R. Byams, Judith R. Baker, Cindy Bailey, Nathan T. Connell, Melissa S. Creary, Randall G. Curtis, Alexis Dinno, Christine J. Guelcher, Michelle Kim, Roshni Kulkarni, Susan Lattimore, Keri L. Norris, Lucy Ramirez, Mark W. Skinner, Susan Symington, Patricia Tobase, Esmeralda Vázquez, Beth B. Warren, Emily Wheat & Tyler W. Buckner. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science. Expert Review of Hematology 16:sup1, pages 87-106.
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Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht. (2023) The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary. Expert Review of Hematology 16:sup1, pages 129-134.
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Margaret V. Ragni, Guy Young, Glaivy Batsuli, Emily Bisson, Shannon L. Carpenter, Stacy E. Croteau, Adam Cuker, Randall G. Curtis, Michael Denne, Bruce Ewenstein, Amber Federizo, Neil Frick, Kerry Funkhouser, Lindsey A. George, W. Keith Hoots, Shawn M. Jobe, Emily Krava, Christopher James Langmead, Roger J. Lewis, José López, Lynn Malec, Ziva Mann, Moses E. Miles$suffix/text()$suffix/text(), Emma Neely, Ellis J. Neufeld, Glenn F. Pierce, Steven W. Pipe, Lisa R. Pitler, Leslie Raffini, Kathaleen M. Schnur & Jordan A. Shavit. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding. Expert Review of Hematology 16:sup1, pages 107-127.
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Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht. (2023) The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders. Expert Review of Hematology 16:sup1, pages 1-5.
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Michelle L. Witkop, Fiona Robinson & Donna DiMichele. (2023) Soliciting international perspectives on an American national research agenda for inherited bleeding disorders. Expert Review of Hematology 16:sup1, pages 13-17.
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Esmeralda Vázquez, Michelle Kim & Maria E. Santaella. (2023) Lived experience experts: a name created by us for us. Expert Review of Hematology 16:sup1, pages 7-11.
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Diane Nugent, Suchitra S. Acharya, Kimberly J. Baumann, Camille Bedrosian, Rebecca Bialas, Kai Brown, Deya Corzo, Amar Haidar, Catherine P. M. Hayward, Peter Marks, Marzia Menegatti, Margaret E. Miller, Kate Nammacher, Roberta Palla, Skye Peltier, Rajiv K. Pruthi, Michael Recht, Benny Sørensen, Michael Tarantino, Alisa S. Wolberg & Amy D. Shapiro. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders. Expert Review of Hematology 16:sup1, pages 55-70.
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Robert F. Sidonio, Jr, Paulette C. Bryant, Jorge Di Paola, Sarah Hale, Meadow Heiman, G Shellye Horowitz, Christi Humphrey, Julie Jaffray, Lora C. Joyner, Raj Kasthuri, Barbara A. Konkle, Peter A. Kouides, Robert Montgomery, Keith Neeves, Anna M. Randi, Nikole Scappe, Cristina Tarango, Kelly Tickle, Pamela Trapane, Michael Wang, Brittany Waters & Veronica H. Flood. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders. Expert Review of Hematology 16:sup1, pages 39-54.
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Duc Q. Tran, Craig C. Benson, Judith A. Boice, Meera Chitlur, Amy L. Dunn, Miguel A. Escobar, Kalpna Gupta, Jill M. Johnsen, James Jorgenson, Scott D. Martin, Suzanne Martin, Shannon L. Meeks, Alfredo A. Narvaez$suffix/text()$suffix/text(), Doris V. Quon, Mark T. Reding, Ulrike M. Reiss, Brittany Savage, Kim Schafer, Bruno Steiner, Courtney Thornburg, Lena M. Volland & Annette von Drygalski. (2023) Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia. Expert Review of Hematology 16:sup1, pages 19-37.
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