European Platform on Rare Disease Registration launched - registration can start

Published: 19 March 2019

The European Platform on Rare Disease Registration (EU RD Platform) developed by the Commission's Joint Research Centre (JRC) in collaboration with DG SANTE has been launched and is accessible online at the following link: https://eu-rd-platform.jrc.ec.europa.eu/.

The EU RD Platform is instrumental in creating an overview of all existing rare disease registries and make them visible at European level.

The tools of the Platform are open to all registries, free of charge. By using these tools which are contained in the European Rare Disease Registry Infrastructure (ERDRI), the Platform copes with the fragmentation of rare disease patients data existing in hundreds of registries across Europe, while the registries remain the owners of their data.

The EU RD Platform's website contains instructions about using the following tools: the European Directory of Registries, the Central Metadata Repository and the Pseudonymisation tool which provides pseudonyms to the registries at local level.

The JRC will organise trainings on using the EU RD Platform for registries staff. The interest for upcoming training sessions can be expressed in the dedicated section on the website.

For questions, you can also contact: EU-RD-PLATFORM@ec.europa.eu.