The EU Platform on Rare Disease Registration

The EU Platform on Rare Disease Registration, The EU RD Platform , is the platform bringing together European rare disease (RD) registries. The Platform aims to tackle the fragmentation of rare disease patients' data contained in hundreds of registries across Europe.

According to the definition used in the EU, a disease is considered to be rare if it affects less than 5 in 10 000 persons, which includes most cancers. Thus, the EU RD Platform includes and supports cancer registries alongside other RD registries.

The EU RD Platform makes registries' data searchable/findable at EU level, thus helping to reach critical numbers of patients necessary for studies and research. It increases visibility and value of each registry and its data and provides standards for data collection (set of common data elements for rare disease registration) and data exchange. 

The European Rare Disease Registry Infrastructure

The core of the EU RD Platform is the European Rare Disease Registry Infrastructure (ERDRI) with its four components:

• the European Directory of Registries (ERDRI.dor),
• the Central Metadata Repository (ERDRI.mdr),
• the Search Broker (ERDRI.sebro)
• a patient pseudonymisation tool, SPIDER.

The EU RD Platform collaborates with the European Reference Networks, some of which also address cancer to some extent.