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Orphanet : Research and trials
<!DOCTYPE html> <html lang="en"> <head> <script src="https://tarteaucitron.io/load.js?domain=www.orpha.net&uuid=bf83258dd5f3bc0f8040bc1a95eedc2ec3ca1a62"></script> <meta charset="UTF-8"> <meta name="viewport" content="width=device-width, initial-scale=1"> <meta name="google-site-verification" content="9sM3zazZuWJ_PI134Dxgq_MqlUEWRYULwgLG7sAaZ4w" > <title>Orphanet : Research and trials</title> <link rel="shortcut icon" href="/build/images/favicon.png" type="image/png" /> <script async src="https://www.googletagmanager.com/gtag/js?id=G-VY3XS4G203"></script> <script> window.dataLayer = window.dataLayer || []; function gtag(){dataLayer.push(arguments);} gtag('js', new Date()); gtag('config', 'G-VY3XS4G203'); </script> <link rel="stylesheet" href="/build/app.c889ea47.css"> </head> <body> <header class="menu d-print-none"> <div class="fixed-top container-fluid d-flex justify-content-between p-0"> <nav> <a href="#menu" class="d-inline-block h-100"> <div class="burger-button closed h-100 py-3 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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 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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="fa-solid fa-flask-vial fa-3x"></i></span> <span>Research and trials</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/research-trials/platforms">Research and trials</a> > <strong><a href="/en/research-trials/registries">Patient registry</a></strong></span> <h2>Search for a patient registry</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/research-trials/research-projects> Research project(s)</a></li> <li class=""><a target="_self" href=/en/research-trials/clinical-trials> Clinical trial(s)</a></li> <li class=""><a target="_self" href=/en/research-trials/biobanks> Biobanks</a></li> <li class="current"><a target="_self" href=/en/research-trials/registries> Patient registries</a></li> <li class=""><a target="_self" href=/en/research-trials/platforms> Platforms</a></li> <li class=""><a target="_self" href=/en/other-information/procedures> Sources/procedures</a></li> <li class=""><a target="_self" href=/en/other-information/reports> Orphanet Reports series</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"> <fieldset class="service-color-box align-self-start mx-4 p-3 d-print-none"> <form name="biobanks_and_registries_search" method="post" action="/en/research-trials/registries"> <div class="row mb-3"> <span class="dark-red col-md-9 col-12 text-end">*</span> <div class="col-9"> <div> <input type="text" id="biobanks_and_registries_search_name" name="biobanks_and_registries_search[name]" required="required" class="js-autocomplete form-control" data-autocomplete-url="/en/disease/autocomplete/classifications_ascendants_search_en" placeholder="Disease name" /> <small class="dark-red"> (*) mandatory field </small> </div> </div> <div class="col-3"> <button type="submit" id="biobanks_and_registries_search_search" name="biobanks_and_registries_search[search]" class="btn-primary btn">Search</button> </div> </div> <div class="row"> <div class="col-6 gray-box"> <div id="biobanks_and_registries_search_mode"><div class="form-check"><input type="radio" id="biobanks_and_registries_search_mode_0" name="biobanks_and_registries_search[mode]" required="required" class="form-check-input" value="pat" checked="checked" /> <label class="form-check-label required" for="biobanks_and_registries_search_mode_0">Disease name</label></div><div class="form-check"><input type="radio" id="biobanks_and_registries_search_mode_1" name="biobanks_and_registries_search[mode]" required="required" class="form-check-input" value="gene" /> <label class="form-check-label required" for="biobanks_and_registries_search_mode_1">Gene name or symbol</label></div></div> </div> <div class="col-12 col-md-4 mt-2 mt-md-0"> <select id="biobanks_and_registries_search_country" name="biobanks_and_registries_search[country]" class="form-select"><option value="">All countries</option><option value="AUSTRALIA">Australia</option><option value="AUSTRIA">Austria</option><option value="BELGIUM">Belgium</option><option value="BULGARIA">Bulgaria</option><option value="CANADA">Canada</option><option value="CROATIA">Croatia</option><option value="CZECH REPUBLIC">Czech Republic</option><option value="DENMARK">Denmark</option><option value="ESTONIA">Estonia</option><option value="FINLAND">Finland</option><option value="FRANCE">France</option><option value="GERMANY">Germany</option><option value="GREECE">Greece</option><option value="HUNGARY">Hungary</option><option value="IRELAND">Ireland</option><option value="ISRAEL">Israel</option><option value="ITALY">Italy</option><option value="MALTA">Malta</option><option value="NETHERLANDS">Netherlands</option><option value="NORWAY">Norway</option><option value="POLAND">Poland</option><option value="PORTUGAL">Portugal</option><option value="SERBIEN">Serbien</option><option value="SLOVENIA">Slovenia</option><option value="SPAIN">Spain</option><option value="SWEDEN">Sweden</option><option value="SWITZERLAND">Switzerland</option><option value="TURKEY">Turkey</option><option value="UKRAINE">Ukraine</option><option value="UNITED KINGDOM">United Kingdom</option><option value="UNITED STATES">United States</option></select> </div> </div> </form> <div class="more-options float-md-end mt-4 float-sm-start"> <label class="fw-bold service-color"> Other search option(s) <span class="up d-none"><i class="fas fa-caret-up"></i></span> <span class="down"><i class="fas fa-caret-up fa-rotate-180"></i></span> </label> <ul class="list-unstyled opacity-0" aria-expanded="false"> <li> <span class="service-color"><i class="fas fa-chevron-right"></i></span> <a href="/en/research-trials/registries-name">Search by patient registry title</a> </li> </ul> </div> <script type="text/javascript"> const radio = document.querySelector('#biobanks_and_registries_search_mode'); if (radio) { // placeholder dynamique pour le champ 'name' selon la valeur de 'mode' // n'est pas plac茅 dans un .js pour permettre d'utiliser les traductions radio.addEventListener('change', () => { const value = document.querySelector('input[name="biobanks_and_registries_search[mode]"]:checked').value; radio.setAttribute('data-pat', 'Disease name' ); radio.setAttribute('data-gene', 'Gene name or symbol' ); document.querySelector('#biobanks_and_registries_search_name').setAttribute('placeholder', 'pat' === value ? radio.dataset.pat : radio.dataset.gene); }); } </script> </fieldset> <div class="row g-0 mt-5"> <div class="col-12"> <div class="help px-4 mt-4"> <div class="col-12 mx-auto col-xxl-11 mb-5 mt-4 mt-sm-0"> <h3>Help</h3> <ul class="list-unstyled"> <li> <span class="icon-container"><i class="mx-2 fas fa-lg fa-file-pdf"></i></span> <a href="/pdfs/orphacom/cahiers/docs/GB/patient_registries_in_Orphanet_R2_R_D_regpat_EP_07.pdf" target="_blank" rel="noopener"> Data collection and registration of patient registries in Orphanet </a> </li> </ul> <p>Orphanet provides information on <b>Patient registries</b> (systematic collections of clinical data for clinical research explicitly focused on a particular rare disease or group of diseases governed by an identified body). </p> <p class="fw-bold">Single patient registries or networks of patient registries (national or international) must be based in one of the countries in the Orphanet consortium. Registries outside the Orphanet consortium countries can be considered if they fulfill Orphanet's inclusion criteria</p> <p>Enter your requested disease name or gene name/symbol to access this information.</p> </div> <div class="warning p-5 mb-5"> <h4><i class="fas fa-sm fa-exclamation-triangle"></i> Warning</h4> <p>The data collection takes place in Orphanet consortium countries and is currently ongoing. Research related resources (research projects, clinical trials, patient registries, biobanks and Variant databases) are also collected and registered in Orphanet database if they are funded by a member agency of the International Rare Diseases Research Consortium (IRDiRC, list of members available <a href="http://www.irdirc.org/about-us/members/" target="_blank">here</a>) located in a country for which there is no Orphanet national team. </p> <p>Information in Orphanet is not intended to replace professional health care. 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