The RD-Connect ID-Cards is an online directory of existing rare disease databases, registries and biobanks.
ID-Cards display basic information about databases, registries and biobanks organised into five sections:
- General overview and organisation
- Diseases collected
- Standards and procedures
- Accessibility of data
- Study documents e.g. study protocol, case report form, informed consent template and data access agreement.
The ‘Diseases collected’ section contains a “disease matrix”, which lists the ORPHAcodes, OMIM numbers and synonyms for every disease. It also provides the number of registered cases or samples available within a database, registry or biobank. To ensure information is current and accurate, this section will be continuously updated by the database curators. Also, the ID-Cards team is investigating ways to connect the ID-Cards system with existing ontologies like Orphanet, OMIM and the Human Phenotype Ontology (HPO), and to integrate its activities inside the wider RD-Connect platform.