Procédures Orphanet
Procédures sur la nomenclature
- Orphanet nomenclature and classification of rare diseases
- ICD-10 coding rules for rare diseases
- Naming rules for the rare disease nomenclature in English
Ce document a été traduit en polonais (2017), en espagnol (2018), en allemand (2019) et en japonais (2019) - Nomenclature production in national language
- Linearization rules for Orphanet classifications
Procédures sur la collecte des données et des informations associées aux maladies rares
- Création et Mise à jour des Textes Résumés des Maladies pour l'Encyclopédie d'Orphanet pour les Professionnels
- Orphanet inventory of genes related to rare diseases
- Epidemiological data collection in Orphanet
- Translation of the Disease Summary Texts of the Orphanet Encyclopedia for Professionnals
- Collection and dissemination of disease information for health professionals and the general public
Informations scientifiques
- Glossary and representation of terms related to diagnostic tests
- Data collection and registration of medicinal products intended for rare diseases in Orphanet
- Data collection and registration of expert centres in Orphanet
- Data collection and registration of patient organisations in Orphanet
- Data collection and registration of diagnostic tests in Orphanet
- Data collection and registration of research projects in Orphanet
- Data collection and registration of Clinicals trials in Orphanet
- Data collection and registration of patient registries in Orphanet
- Data collection and registration of biobanks in Orphanet