The European Commission's Joint Research Centre (DG JRC), together with DG SANTE, is developing the EU Rare Diseases Registries Platform. The Platform aims to cope with the enormous fragmentation of RD data contained in RD patient registries across Europe by promoting EU-level standards for data collection and interoperability tools for RDs data exchanges. This will support knowledge generation on RD and will facilitate epidemiological, clinical, translational, pharmacological and other studies, including research, at European level.
 
According to the needs expressed by stakeholders, the first important building block for the EU RD Platform is the "Set of Common Data Elements for RD Registration", which has just been released and is the result of a dedicated Working Group facilitated by the JRC and composed of experts from projects related to common data sets: EUCERD Joint Action, EPIRARE and RD-Connect, as well as the JRC's EU RD Platform team. This Set is recommended as a constitutive element for all RD registries in Europe. This first step towards interoperability of registries is being offered to the European Reference Network's (ERNs) existing registries and registries under development and to all other RD registries at national, regional, local level in the Member States, to researchers and patient organisations thus covering the whole range of the EU RD Platform's stakeholders.

You can download this document HERE
 
The JRC will organise training sessions on the use and implementation of the "Set of Common Data Elements" and the interoperability tools under development (more information will come) for all interested RD Registries.

If you are interested please send us the name(s) of any persons in existing registries or who are planning to set up new registries who would be interested in the training courses.

You can contact us at: erarecoord(at)agencerecherche.fr