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Orphanet: Quality charterOrphanet procedures
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col-9 row d-lg-flex d-none px-3 py-5"> <div class="col-6 pe-lg-4"> <div class="border-end border-1 border-dark"> <h5 class="orpha-blue fw-bold">Orphanet produces its data according to published procedures</h5> <a class="btn-blue mt-3" href="/en/other-information/procedures">Read</a> </div> </div> <div class="col-6 ps-lg-4 news-menu"> <ul class="list-unstyled mx-auto"> <li><a class="orpha-blue fw-bold" href="//ec.europa.eu/health-eu/health_problems/rare_diseases/index_en.html" title="Rare Diseases - European Commission">Rare Diseases - European Commission</a></li> <li><a class="orpha-blue fw-bold" href="//www.rd-action.eu/" title="RD-Action">RD-Action</a></li> <li><a class="orpha-blue fw-bold" href="//www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/landing/orphan_search.jsp&mid=WC0b01ac058001d12b" title="European Medicines Agency">European Medicines Agency</a></li> <li><a class="orpha-blue fw-bold" href="//www.irdirc.org/" title="IRDiRC">IRDiRC</a></li> <li><a class="orpha-blue fw-bold" href="//rarediseases.info.nih.gov/" title="Office of rare diseases research (US)">Office of rare diseases research (US)</a></li> <li><a class="orpha-blue fw-bold" href="https://ec.europa.eu/health/rare_diseases/expert_group_en" title="EC Expert Group on Rare Diseases (EU)">EC Expert Group on Rare Diseases (EU)</a></li> <li><a class="orpha-blue fw-bold" href="//ec.europa.eu/health/ern/networks_en" title="European Reference Networks">European Reference Networks</a></li> <li><a class="orpha-blue fw-bold" href="https://ojrd.biomedcentral.com/" title="header.ern_ojrd_texttext">OJRD</a> </li> </ul> </div> </div> <div class="col-lg-3 col-12 row bg-white ms-2 text-center report-button align-self-start opacity-hover"> <a href="/en/other-information/reports" class="text-white h2 text-decoration-none p-5">Orphanet Report Series</a> </div> </div> <div class="container d-flex mx-auto justify-content-around gap-4 my-4 flex-wrap"> <div class="col-lg-4 col-12 row text-center opacity-hover border-orpha-news border-4 border"> <a href="//international.orphanews.org/" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Read OrphaNews" src="/build/images/logo-orphanews.png"> </a> </div> <div class="col-lg-4 col-12 row text-center opacity-hover border-orpha-data border-4 border"> <a href="//www.orphadata.com/" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Access Orphadata" src="/build/images/logo-orphadata.png"> </a> </div> <div class="col-lg-4 col-12 row text-center opacity-hover border-blue border-4 border"> <a href="//www.orphadata.com/ontologies/" class="text-white h2 text-decoration-none align-self-center px-5 py-3"> <img class="align-self-center" height="45" alt="Access ORDO" src="/build/images/logo-ordo.png"> </a> </div> </div> </nav> <div class="modal fade " id="socialShare" tabindex="-1" aria-labelledby="socialShare" aria-hidden="true"> <div class="modal-dialog"> <div class="modal-content rounded-0"> <div class="modal-header p-0 justify-content-end"> <div type="button" class="text-white bg-orpa-blue py-1 px-3 fs-4" data-bs-dismiss="modal" aria-label="Close">X</div> </div> <div class="modal-body"> <ul class="list-unstyled text-center"> <li class="mb-4"> <a class="orpha-blue" href="https://www.twitter.com/share?url=http://www.orpha.net/en/other-information/procedures" target="_blank" title="Share"> <i class="fab fa-lg fa-twitter"></i> Share</a> </li> <li> <a class="orpha-blue" href="https://www.facebook.com/sharer/sharer.php?u=http://www.orpha.net/en/other-information/procedures" target="_blank" title="Share"> <i class="fab fa-lg fa-facebook-square"></i> Share</a> </li> </ul> </div> </div> </div> </div> </header> <main class="container-fluid p-0"> <article class="other-information w-100 py-5"> <header class="row-fluid text-center"> <div class="col-12 my-4"> <div class="current-event"> <div class="mt-5 d-flex justify-content-center"> <div class="bandeau-search"> <a href="https://don.telethon.fr/"> <img src="/images/banner.png" alt="Telethon 2024" class="img-fluid" /> </a> </div> </div> <h1 class="current-image-title mb-0">Knowledge on <strong>rare diseases</strong> and <strong>orphan drugs</strong></h1> <a class="orpha-blue small text-decoration-underline" href="http://international.orphanews.org/summary/editorial/nl/id-200327.html" target="_blank" title="COVID-19 & Rare diseases"> COVID-19 & Rare diseases </a> <img class="img-fluid" alt="logo" src="/build/images/logoMain.png" width="4%"> <a class="orpha-blue small text-decoration-underline" href="https://international.orphanews.org/newsletter-en/editorial/nl/en20200314.html#or_resources-for-refugees-and-displaced-persons-with-rare-diseasesFR/IP_22_1469" target="_blank" title="Rare Diseases Resources for Refugees/Displaced Persons"> Rare Diseases Resources for Refugees/Displaced Persons </a> </div> </div> </header> <article class="row gx-0 gb-2"> <div class="col-xxl-9 col-lg-11 col-11 mx-auto service-wrapper pb-5"> <header class="row g-0 mb-4"> <aside class="d-none d-sm-none d-lg-block col-2"> <div class="h-100 w-100 d-flex flex-column justify-content-evenly text-center service-card py-4 px-2"> <span class="icon-container"><i class="fas fa-book-open fa-3x"></i></span> <span>Other information</span> </div> </aside> <div class="col-10 "> <div class="h-100 w-100 d-flex flex-column justify-content-evenly ps-4 mt-4 mt-md-0 d-print-none"> <span class="my-sm-3 icon-container"><a href="/">Homepage</a> > <a href="/en/other-information/reports">Other information</a> > <strong><a href="/en/other-information/procedures">Orphanet procedures</a></strong></span> <h2>Orphanet procedures</h2> </div> </div> </header> <main class="row g-0 "> <nav class="d-none d-sm-none d-lg-block col-2"> <ul class="list-unstyled"> <li class=""><a target="_self" href=/en/other-information/quality-charters> Quality charters</a></li> <li class=""><a target="_self" href=/en/other-information/about-orphan-drugs> About orphan drugs</a></li> <li class=""><a target="_self" href=/en/other-information/about_orphanet> About Orphanet</a></li> <li class=""><a target="_self" href=/en/other-information/about-rare-diseases> About Rare Diseases</a></li> <li class=""><a target="_self" href=/en/other-information/reports> Orphanet Reports series</a></li> <li class=""><a target="_self" href=/en/other-information/orphanet-tutorial> Orphanet Tutorials</a></li> <li class="current"><a target="_self" href=/en/other-information/procedures> Orphanet procedures</a></li> <li><a target="_blank" href=//www.orphadata.com/> Download dataset</a></li> </ul> </nav> <div class="col-sm-12 col-md-10 col-lg-10 col-xl-10"> <div class="row"> <div class="col-11 mx-auto other-information-content"> <p class="activity-reports p-2 text-white fw-bold">General procedures</p> <table> <tbody> <tr> <td class="col-md-3"> <img src="/build/images/other/procedures/GeneralProcedures.gif" alt="img pdf general procedures"/> </td> <td class="col-md-9 p-4"> <ul class="list-unstyled"> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/special/eproc_SOPs.pdf">Orphanet Standard Operating Procedures</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_IAB_V02.pdf">International Advisory Board rules of procedure</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_GAB_V01.pdf">Orphanet Advisory Board on Genetics Rules of procedures</a> </li> </ul> </td> </tr> </tbody> </table> <p class="activity-reports mt-4 p-2 text-white fw-bold">Procedures concerning the nomenclature</p> <table> <tbody> <tr> <td class="col-md-3"> <img src="/build/images/other/procedures/ProceduresNomenclature.gif" alt="img pdf Procedures concerning the nomenclature"/> </td> <td class="col-md-9 p-4"> <ul class="list-unstyled"> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_disease_inventory_R1_Nom_Dis_EP_05.pdf">Orphanet nomenclature and classification of rare diseases</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Orphanet_ICD10_coding_rules_R1_Nom_ICD_EP_07.pdf">ICD-10 coding rules for rare diseases</a> </li> <li class="my-1"> <p class="my-0"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_Disease_naming_rules_in_English_PR_R1_Nom_01.pdf">Naming rules for the rare disease nomenclature in English</a> </p> <p> This document has been translated into <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_Disease_naming_rules_in_Polish.pdf">Polish</a> (2017) and <a target="_blank" href="/pdfs/orphacom/cahiers/docs/ES/Disease_naming_rules_in_Spanish_R1_Nom_01.pdf">Spanish</a> (2018) and <a target="_blank" href="/pdfs/orphacom/cahiers/docs/DE/eproc_Disease_naming_rules_in_German_R1_Nom_Dis_EP_11.pdf">German</a> (2019) and <a target="_blank" href="/pdfs/orphacom/cahiers/docs/eproc_Disease_naming_rules_in_Japanese_PR_R1_Nom_01.pdf">Japanese</a> (2019) and <a target="_blank" href="/pdfs/orphacom/cahiers/docs/eproc_Disease_naming_rules_in_Portuguese.pdf">Portuguese</a> (2021) and <a target="_blank" href="/pdfs/orphacom/cahiers/docs/eproc_Disease_naming_rules_in_Russian.pdf">Russian</a> (2021) </p> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_Rare_disease_Nomenclature_Production__national-language.pdf">Nomenclature production in national language</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Orphanet_linearisation_rules.pdf">Linearization rules for Orphanet classifications</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_Collaboration_networks_R1_Nom_Rev_Exp_EP_10.pdf">Collaboration with networks of expertise for the revision of the Orphanet nomenclature and classification of rare diseases</a> </li> </ul> </td> </tr> </tbody> </table> <p class="activity-reports mt-4 p-2 text-white fw-bold">Procedures concerning the collection of information related to rare diseases</p> <table> <tbody> <tr> <td class="col-md-3"> <img src="/build/images/other/procedures/ScientificInformation.gif" alt="img Scientific information"/> </td> <td class="col-md-9 p-4"> <h3 class="fw-bold mb-4 text-black">Scientific information</h3> <ul class="list-unstyled"> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Orphanet_DiseaseSummaryText_R1_Prod_sum_EP_02.pdf">Creation and Update of Disease Summary Texts in English for the Orphanet Encyclopaedia for Professionals</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Orphanet_Genes_inventory_R1_Ann_gen_EP_02.pdf">Orphanet inventory of genes related to rare diseases</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Epidemiology_in_Orphanet_R1_Ann_Epi_EP_05.pdf">Epidemiological data collection in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Disease_Summary_translation_R1_Prod_sumNL_EP_17.pdf">Translation of the Disease Summary Texts of the Orphanet Encyclopedia for Professionnals</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Acquisition_of_disease_information_R1_Wcont_EP_02.pdf">Collection and dissemination of disease information for health professionals and the general public</a> </li> </ul> </td> </tr> <tr> <td class="col-md-3"><img src="/build/images/other/procedures/ExpertRessources.gif" alt="img Expert ressources"/></td> <td class="col-md-9 p-4"> <p class="fw-bold h3 mb-4 text-black">Expert resources</p> <ul class="list-unstyled"> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/FR/Glossary_terms_related_to_diagnostic_tests.pdf">Glossary and representation of terms related to diagnostic tests</a> </li> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/medicinal_products_in_Orphanet_R2_R_D_Drugs_EP_06.pdf">Data collection and registration of medicinal products intended for rare diseases in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/eproc_expert_centres_R2_PatCar_Cns_EP_02.pdf">Data collection and registration of expert centres in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/patient_org_R2_PatCar_PO_EP_09.pdf">Data collection and registration of patient organisations in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Dgs_R2_PatCar_Dgs_EP_04.pdf">Data collection and registration of diagnostic tests in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Data_collection_and_registration_of_research_projects_R2_R-D_RP_EP_04.pdf">Data collection and registration of research projects in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Clinical_trials_in_Orphanet_R2_R_D_CT_EP_02.pdf">Data collection and registration of Clinicals trials in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/patient_registries_in_Orphanet_R2_R_D_regpat_EP_07.pdf">Data collection and registration of patient registries in Orphanet</a> </li> <li class="my-1"> <a target="_blank" href="/pdfs/orphacom/cahiers/docs/GB/Biobanks_in_Orphanet_R2_R_D_BB_EP_08.pdf">Data collection and registration of biobanks in Orphanet</a> </li> </ul> </td> </tr> </tbody> </table> </div> </div> </div> </main> </div> </article> </article> </main> <script src="/build/runtime.f3575a88.js" defer></script><script src="/build/755.5a8586e9.js" defer></script><script src="/build/673.f47275b8.js" defer></script><script src="/build/467.7cd7293e.js" defer></script><script src="/build/app.f38c68b0.js" defer></script> </body> <footer> <section class="partners bg-white my-3 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