Expert Review of Hematology, Volume 16, Issue sup1 (2023)

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Expert Review of Hematology, Volume 16, Issue sup1 (2023)

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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

Foreword

Editorial
The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders
Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht
Pages: 1-5
Published online: 15 Mar 2023
First Page PreviewforThe National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders | Full Text | References | PDF (601.4 KB) | EPUB | Supplemental
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Editorial

Editorial
Lived experience experts: a name created by us for us
Esmeralda Vázquez, Michelle Kim & Maria E. Santaella
Pages: 7-11
Published online: 15 Mar 2023
AbstractforLived experience experts: a name created by us for us | Full Text | References | PDF (551.4 KB) | EPUB
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Editorial
Soliciting international perspectives on an American national research agenda for inherited bleeding disorders
Michelle L. Witkop, Fiona Robinson & Donna DiMichele
Pages: 13-17
Published online: 15 Mar 2023
First Page PreviewforSoliciting international perspectives on an American national research agenda for inherited bleeding disorders | Full Text | References | PDF (339.5 KB) | EPUB | Supplemental
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Original Research

Article
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia
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 Jr, Doris V. Quon, Mark T. Reding, Ulrike M. Reiss, Brittany Savage, Kim Schafer, Bruno Steiner, Courtney Thornburg, Lena M. Volland & Annette von Drygalski
Pages: 19-37
Published online: 15 Mar 2023
AbstractforBuilding the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia | Full Text | References | PDF (2.1 MB) | EPUB | Supplemental
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Open Access
Article
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
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
Pages: 39-54
Published online: 15 Mar 2023
AbstractforBuilding the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders | Full Text | References | PDF (2.3 MB) | EPUB | Supplemental
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Open Access
Article
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
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
Pages: 55-70
Published online: 15 Mar 2023
AbstractforBuilding the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders | Full Text | References | PDF (5.8 MB) | EPUB | Supplemental
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Open Access
Article
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, Homa K. Ahmadzia, Diane L. Bartlett, Debbie Bensen-Kennedy, Vidhi Desai, Kristina M. Haley, Sherry L. Herman-Hilker, Amanda M. Kilgore, Roshni Kulkarni, Michelle Lavin, Shari Luckey, Kristen A. Matteson, Kristin Paulyson-Nuñez, Claire S. Philipp, Sachiko Ragosta, Kimberly Rosen, Dawn Rotellini & Angela C. Weyand
Pages: 71-86
Published online: 15 Mar 2023
AbstractforBuilding 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 | Full Text | References | PDF (5.4 MB) | EPUB | Supplemental
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Open Access
Article
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
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
Pages: 87-106
Published online: 15 Mar 2023
AbstractforBuilding 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 | Full Text | References | PDF (3.6 MB) | EPUB | Supplemental
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Open Access
Article
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding
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 III, Emma Neely, Ellis J. Neufeld, Glenn F. Pierce, Steven W. Pipe, Lisa R. Pitler, Leslie Raffini, Kathaleen M. Schnur & Jordan A. Shavit
Pages: 107-127
Published online: 15 Mar 2023
AbstractforBuilding the foundation for a community-generated national research blueprint for inherited bleeding disorders: facilitating research through infrastructure, workforce, resources and funding | Full Text | References | PDF (6 MB) | EPUB | Supplemental
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Open Access

Special Report

Article
The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary
Leonard A. Valentino, Michelle L. Witkop, Maria E. Santaella, Donna DiMichele & Michael Recht
Pages: 129-134
Published online: 15 Mar 2023
AbstractforThe National Hemophilia Foundation State of the Science Research Summit initiative: executive summary | Full Text | References | PDF (270 KB) | EPUB
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