This screen gives access to a list of networks of research projects, of multinational clinical trials, of patient registries, of mutation registries and of biobanks, through a query by disease name or gene name. You may specify the country and/or a specific network category by selecting it among a list, but this is optional.
Enter your requested disease name in the query zone and click OK to validate.
You may use truncated names.
A list of all diseases matching your query will appear. Select the disease of interest to you.
Other search options: you have the possibility to search by network name, by professional, by institution, by substance/trade name, by sponsor/funding body.
Networks of research projects, of multinational clinical trials, of patient registries, of mutation registries and of biobanks listed in Orphanet are official networks. They match the following criteria: to be funded at International or national level. Only those with members located in Europe and surrounding countries are listed. The information which is displayed is the information provided by the coordinator of the network.
It is recommended not to ask for very large lists as the number of possible results is voluntarily limited to protect the database from abuses.
In case you wish to obtain large datasets, please ask Orphanet to do the data extraction for you.
Data collection takes place in European and surrounding countries and is currently ongoing. The database cannot yet be regarded as comprehensive. If a network is not listed in a region or a country, it may not exist or has not been identified yet or the network may have refused to be listed.
Orphanet aims to provide rare disease information to healthcare professionals, patients, and their relatives, in order to contribute improving the diagnosis, care and treatment of these diseases. 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.