The RD-Connect Registry & Biobank Finder lets researchers find the rare disease patient registries and biobanks 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 registry manager. The system also provides access to documents such as databases’ study protocols, case report forms, informed consent templates and data access agreements.
The Registry & Biobank Finder also supports creating new rare diseases patient registries. The Linked Data And Ontology Task Force helps registry managers set their registry in a way that allows standardization, interoperability and linking up with other registries. Read more about data linkage >>
For more information on how to use the Registry & Biobank Finder and to register a registry or biobank, see our user guide and video tutorials below.
Guide to the Registry & Biobank Finder for registry and biobank managers
Gainotti S. et al.: The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers. 2018, Eur J Hum Genet.