The RD-Connect Registry & Biobank Finder lets researchers find the rare disease biobanks and patient registries that store data on their rare disease of interest. The system provides databases’ contact data and the numbers of registered cases for each disease in the registry/biobank, regularly updated by the database curators.
Users can search the directory by disease name and its synonyms, ORPHA- or OMIM-codes and other keywords, such as the country or biobank manager. The system also provides access to documents such as databases’ study protocols, case report forms, informed consent templates, data access agreements and information about biobanks' quality management standards, such as ISO certificates.
For biobanks, registration in the Finder is also the first step to apply for the Biobank Assessment Process in order to upload their sample collections to the RD-Connect Sample Catalogue.
For more detailed information on how use the Registry & Biobank Finder and how to register a patient registry or biobank, see our user guide and watch our tutorial videos.
