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Original Research
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
Diane Nugenta Center for Inherited Blood Disorders, Orange, California, USA;b Pediatric Hematology Division, Department of Pediatrics, University of California at Irvine, Children's Hospital of Orange County, Irvine, California, USAView further author information
, Suchitra S. Acharyac Hemostasis and Thrombosis Center, Northwell Health, New Hyde Park, New York, New York, USAView further author information
, Kimberly J. Baumannd Center for Bleeding and Clotting Disorders, M Health Fairview, Minneapolis, Minnesota, USAView further author information
, Camille Bedrosiane Ultragenyx Pharmaceutical IncNovato, California, USAView further author information
, Rebecca Bialasf Plasminogen Deficiency Foundation, Durham, North Carolina, USAView further author information
, Kai Browng National Hemophilia Foundation, New York, New York, USAView further author information
, Deya Corzoh Sigilon Therapeutics, Cambridge, Massachusetts, USAView further author information
, Amar Haidari Patient author, Lived Experience Expert, Dearborn, Michigan, USAView further author information
, Catherine P. M. Haywardj Hamilton Regional Laboratory Medicine Program, Hamilton Health Sciences, Hamilton, Ontario, Canada;k Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada
https://orcid.org/0000-0002-2843-0817View further author information
Peter Marksl Center for Biologics Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, Maryland, USAView further author information
, Marzia Menegattim Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy
https://orcid.org/0000-0002-8527-7556View further author information
Margaret E. Millern Oncology Support Service, Providence Alaska Medical Center, Anchorage, Alaska, USAView further author information
, Kate Nammacherg National Hemophilia Foundation, New York, New York, USAView further author information
, Roberta Pallam Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy;o Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy
https://orcid.org/0000-0001-8837-2367View further author information
Skye Peltierd Center for Bleeding and Clotting Disorders, M Health Fairview, Minneapolis, Minnesota, USA
https://orcid.org/0000-0002-1527-6638View further author information
Rajiv K. Pruthip Comprehensive Hemophilia Center, Division of Hematology, Mayo Clinic, Rochester, Minnesota, USA
https://orcid.org/0000-0002-6969-929XView further author information
Michael Rechtq American Thrombosis and Hemostasis Network, Rochester, New York, USA;r The Hemophilia Center, Oregon Health & Science University, Portland, Oregon, USA
https://orcid.org/0000-0002-2805-1016View further author information
Benny Sørensens Hemab Therapeutics, Copenhagen, DenmarkView further author information
, Michael Tarantinot Bleeding and Clotting Disorders Institute, Peoria, Illinois, USAView further author information
, Alisa S. Wolbergu Department of Pathology and Laboratory Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;v UNC Blood Research Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
https://orcid.org/0000-0002-2845-2303View further author information
Amy D. Shapirow Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USACorrespondence[email protected]
https://orcid.org/0000-0003-2821-7159View further author information
Pages 55-70
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Received 14 Dec 2022, Accepted 30 Jan 2023, Published online: 15 Mar 2023
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