Procedure di Orphanet
Procedure riguardanti la nomenclatura
- Orphanet nomenclature and classification of rare diseases
- Regole di codifica dell'ICD-10 per le malattie rare
- Naming rules for the rare disease nomenclature in English
Questo documento è stato tradotto in polacco (2017), spagnolo (2018), allemand (2019) e giapponese (2019) - Nomenclature production in national language
- Linearization rules for Orphanet classifications
Procedure per la raccolta di informazioni riguardanti le malattie rare
- Realizzazione e aggiornamento delle descrizioni delle malattie per l'enciclopedia dei professionisti di Orphanet
- 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
Informazioni scientifiche
- 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