In ICD-11, the main code for a rare disease is selected according to the most severe system involvement or the specialist most likely to manage the disease.
Sources
- Rare diseases (who.int)
- https://ojrd.biomedcentral.com/articles/10.1186/s13023-015-0251-8 (ojrd.biomedcentral.com)
- https://www.medrxiv.org/content/10.1101/2025.08.10.25333394v2.full (medrxiv.org)
- https://www.nature.com/articles/s41598-026-43020-x (nature.com)
- https://www.sciencedirect.com/topics/nursing-and-health-professions/international-classification-of-diseases (sciencedirect.com)
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