Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders

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ISTH/SSC bleeding assessment tool: a standardized questionnaire and a proposal for a new bleeding score for inherited bleeding disorders.

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Rare Disease Terminology and Definitions-A Systematic Global Review: Report of the ISPOR Rare Disease Special Interest Group.

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Author and article information

Contributors

Catherine P. M. Hayward: (View ORCID Profile)

Marzia Menegatti: (View ORCID Profile)

Roberta Palla: (View ORCID Profile)

Skye Peltier: (View ORCID Profile)

Rajiv K. Pruthi: (View ORCID Profile)

Michael Recht: (View ORCID Profile)

Alisa S. Wolberg: (View ORCID Profile)

Amy D. Shapiro: (View ORCID Profile)

Journal

Title: Expert Review of Hematology

Abbreviated Title: Expert Review of Hematology

ISSN (Print): 1747-4086

ISSN (Electronic): 1747-4094

Publication date Created: March 15 2023

Publication date (Electronic): March 15 2023

Publication date (Print): March 15 2023

Volume: 16

Issue: sup1

Pages: 55-70

Affiliations

[1 ]Center for Inherited Blood Disorders, Orange, California, USA

[2 ]Pediatric Hematology Division, Department of Pediatrics, University of California at Irvine, Children's Hospital of Orange County, Irvine, California, USA

[3 ]Hemostasis and Thrombosis Center, Northwell Health, New Hyde Park, New York, New York, USA

[4 ]Center for Bleeding and Clotting Disorders, M Health Fairview, Minneapolis, Minnesota, USA

[5 ]Ultragenyx Pharmaceutical Inc Novato, California, USA

[6 ]Plasminogen Deficiency Foundation, Durham, North Carolina, USA

[7 ]National Hemophilia Foundation, New York, New York, USA

[8 ]Sigilon Therapeutics, Cambridge, Massachusetts, USA

[9 ]Patient author, Lived Experience Expert, Dearborn, Michigan, USA

[10 ]Hamilton Regional Laboratory Medicine Program, Hamilton Health Sciences, Hamilton, Ontario, Canada

[11 ]Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada

[12 ]Center for Biologics Evaluation and Research, U.S. Food and Drug Administration, Silver Spring, Maryland, USA

[13 ]Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy

[14 ]Oncology Support Service, Providence Alaska Medical Center, Anchorage, Alaska, USA

[15 ]Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy

[16 ]Comprehensive Hemophilia Center, Division of Hematology, Mayo Clinic, Rochester, Minnesota, USA

[17 ]American Thrombosis and Hemostasis Network, Rochester, New York, USA

[18 ]The Hemophilia Center, Oregon Health & Science University, Portland, Oregon, USA

[19 ]Hemab Therapeutics, Copenhagen, Denmark

[20 ]Bleeding and Clotting Disorders Institute, Peoria, Illinois, USA

[21 ]Department of Pathology and Laboratory Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

[22 ]UNC Blood Research Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA

[23 ]Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana, USA

Article

DOI: 10.1080/17474086.2023.2175661

SO-VID: 47765b60-9d54-49b5-9489-3651f3318c87

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http://creativecommons.org/licenses/by-nc-nd/4.0/

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Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders

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Most cited references 75

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Rare Disease Terminology and Definitions-A Systematic Global Review: Report of the ISPOR Rare Disease Special Interest Group.

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