Databases and patient registries

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The benefits of establishing patient registries are evident in rare diseases, especially the ultra rare for which expertise is available in a very small number of centres worldwide. No single institution, and in many cases no single country, has sufficient numbers of patients to conduct generalizable clinical and translational research.

Currently registries exist for a small fraction of rare diseases and, conversely, more than one registry exists for certain rare diseases. Thus, calls are increasing both for the expanded use of registries and for a more systematic and standardized approach to their creation, maintenance, and accessibility on an international and global basis.

RD-Connect promotes the wide sharing of existing registry data throughout the online catalogue, and favors the creation of new registries and the linkage of existing ones.

The RD-Connect catalogue will offer detailed information on the number of registered cases in each database, on the content of participating databases and procedures for ensuring quality of the data. RD-Connect promotes the use of ontologies for phenotype description and the adoption of common data elements to increase standardisation and interoperability of RD registries.

RD-Connect is developing a toolkit in order to help the start up of new registries and ensure interoperability of existing ones.