ID-Cards: linking up rare disease research across the world

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:

  1. General overview and organisation
  2. Diseases collected
  3. Standards and procedures
  4. Accessibility of data
  5. 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.