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...

Celý popis

Podrobná bibliografie

Hlavní autoři:	Céline Angin, Monica Mazzucato, Stefanie Weber, Kurt Kirch, Waed Abdel Khalek, Houda Ali, Sylvie Maiella, Annie Olry, Anne-Sophie Jannot, Ana Rath
Médium:	Artigo
Jazyk:	Inglês
Vydáno:	BMC 2024-01-01
Edice:	Orphanet Journal of Rare Diseases
Témata:	Rare diseases Undiagnosed patients Coding ORPHAcodes Health information systems Diagnosis
On-line přístup:	https://doi.org/10.1186/s13023-024-03030-2
Tagy:	Přidat tag Žádné tagy, Buďte první, kdo vytvoří štítek k tomuto záznamu!