Fig. 3 | European Journal of Human Genetics

Fig. 3

From: The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers

Fig. 3

An ID-Card of an individual database. The detailed description of each registry or biobank in the directory is presented as an ID-Card with the address and three tabs: “Overview”, “Diseases” and “Documents”. “Overview” provides general information about the database, such as the contact data, source of funding, target population and membership in networks. “Diseases” opens a Disease Matrix, which lists all the diseases for which the registry/biobank has collected data, with the numbers of cases (patients or donors) and the mutations covered. The “Documents” tab provides access to various documents, such as database’s data transfer agreement, templates for informed consent and publications