Registry & Biobank Finder for biobanks

Registry & Biobank Finder is a global directory that allows finding biobanks and patient registries that store information and samples from patients with the rare disease of interest.

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 and data access agreements.
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.
How to browse the Registry & Biobank Finder
How to create a profile in the Registry & Biobank Finder
Accessing Biobank Assessment Area in the Registry & Biobank Finder
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