National RD Registry

 

The National RD Registry collects information of persons diagnosed with any of the rare or low prevalence disease. A first step regarding the establishment of a National RD Registry was taken by the ISCIII in 2005, when the Rare Diseases Register and Sample Biobank were included in the Spanish Data Protection Agency Registry. The National RD Registry’s main aim is to build a comprehensive platform where patient- and population-based registries can be harmonised.


https://registroraras.isciii.es