Registry&Biobank Finder for registries

The RD-Connect Registry&Biobank Finder is an online directory of existing rare disease databases, registries and biobanks.

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. 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. Registry&Biobank Finder offers databases’ contact data and the numbers of registered cases for each disease in the registry/biobank, regularly updated by the database curators. The system also provides access to documents such as databases’ study protocols, case report forms, informed consent templates and data access agreements.

Registry & Biobank Finder helps to link up rare disease registries. This requires standardisation of data and interoperability of the registries, which can be achieved by using ontologies for describing patients’ phenotypes in a standardized way and the adopting Common Data Elements (CDEs).

Registry&Biobank Finder also supports creating new rare diseases 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 detailed information on how use the Registry&Biobank Finder and how to register a patient registry or biobank, see our user guide.

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