Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project

Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project

Abstract Background In European Union countries, any disease affecting less than 5 people in 10,000 is considered rare. As expertise is scarce and rare diseases (RD) are complex, RD patients can remain undiagnosed for many years. The period of searching for a diagnosis, called diagnostic delay, some...

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Bibliographic Details
Main Authors: Céline Angin, Monica Mazzucato, Stefanie Weber, Kurt Kirch, Waed Abdel Khalek, Houda Ali, Sylvie Maiella, Annie Olry, Anne-Sophie Jannot, Ana Rath
Format: Article
Language:English
Published: BMC 2024-01-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Undiagnosed patients
Coding
ORPHAcodes
Health information systems
Diagnosis
Online Access:https://doi.org/10.1186/s13023-024-03030-2

Internet

https://doi.org/10.1186/s13023-024-03030-2

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