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Poor education and urgent information need for emergency physicians about rare diseases in China by Zhou, Lingli (author);Xu, Jun (author);Yang, Jing (author) is a Biochemistry, Genetics and Molecular Biology article available to read on EtoBox.

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## Background Rare diseases are serious and chronic diseases that affect no more than 1 person in 2000 (in European Union criteria). Patients suffering from RDs may come to the emergency department for life-threatening symptoms, such as acute aortic dissection, intracranial haemorrhage, and severe respiratory distress. Diagnostic delay of rare disease patients is common and often caused by low rare disease awareness among physicians. The main aim of this study was to investigate Chinese emergency physicians’ basic knowledge, information access and educational needs regarding rare diseases. An online questionnaire was completed by Chinese emergency physicians during January and March 2021. ## Methods and results A total of 539 emergency physicians, including 200 females and 339 males, responded to the questionnaire-based study. More than half of the respondents were from Tertiary A hospitals and had engaged in medical clinical work for more than 10 years. Only 4.27% of respondents correctly estimated the prevalence of rare diseases. A few respondents knew the exact number of RDs in the first official list of rare diseases in 2018. A total of 98.5% of respondents rated their knowledg

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Author

Zhou, Lingli (author);Xu, Jun (author);Yang, Jing (author)

Publisher

Springer Science and Business Media LLC

Published

2022

Language

EN

Field

Biochemistry, Genetics and Molecular Biology (Life Sciences)