A new EU online platform is to be launched that will help to support European citizens living with a rare disease.
The European Platform on Rare Diseases Registration will bring together data on patients with specific conditions, which are currently held in about 600 registries.
It will include a registry infrastructure comprising the European Directory of Registries, which gives an overview of each participating registry; the Central Metadata Repository, which stores all types of variables used by the registries; and a data protection tool.
Most of the national rare disease registries in the EU are managed by individual hospitals, research institutions, pharmaceutical companies or patient advocacy groups, which means the type of data collected varies.
The new platform aims to create the critical mass of patient data that is needed to trigger pharmacological, translational or research studies.
Vytenis Andriukaitis, commissioner for Health and Food Safety, said: “This new EU Platform on Rare Diseases Registration will address the fragmentation of rare diseases data, promote the interoperability of existing registries and will help to create new ones.
“Moreover, the platform will also be useful for the work of European Reference Networks, real EU success story, allowing them make use of anonymised information from a large pool of patients and offer better treatment to those in need."
Tibor Navracsics, commissioner for Education, Culture, Youth and Sport, responsible for the Joint Research Centre, said: "This platform will help scientists, policymakers and patients alike make the most of data on rare diseases that have, until now, remained largely untapped.
“By setting EU-wide standards for data collection and exchange, the platform will also mean that information collected in the future can more easily be compared across Europe. And patients can rest assured that their private data will remain private – while benefiting from improved diagnosis and treatment."
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