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

Expert review of hematology（2023）

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摘要

Centralization and expansion of expertise and resources, flexible innovative research and regulatory approaches, and inclusion of all people with ultra-rare inherited BDs and their health care professionals will be essential to capitalize on the opportunities outlined herein.

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关键词

Inherited bleeding disorder,National Hemophilia Foundation,knowledge gaps,patient-centered,research,therapeutic gaps,ultra-rare disorders

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