Knowledge on rare diseases and orphan drugs
COVID-19 & Rare diseases
Rare Diseases Resources for Refugees/Displaced Persons
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Orphanet provides information on Patient registries (systematic collections of clinical data for clinical research explicitly focused on a particular rare disease or group of diseases governed by an identified body).
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
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Warning
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 here) located in a country for which there is no Orphanet national team.
Information in Orphanet is not intended to replace professional health care. Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database.