Orphanet procedures
Procedimentos relativos à nomenclatura
- Orphanet nomenclature and classification of rare diseases
- Regras de codificação da CID-10 para as doenças raras
- Naming rules for the rare disease nomenclature in English
Este documento foi traduzido para polonês (2017), espanhol (2018), allemand (2019), japonês (2019) and Portuguese (2021) and Russian (2021) - Nomenclature production in national language
- Linearization rules for Orphanet classifications
- Collaboration with networks of expertise for the revision of the Orphanet nomenclature and classification of rare diseases
Procedimentos relativos à recolha de informações relacionadas com doenças raras
- Criação e Atualização de Textos de Resumo das Doenças para a Enciclopédia Orphanet para Profissionais
- 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
Informação científica
- 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