Towards establishing a European platform on rare diseases registration
Rare Disease Day is observed internationally on the last day of February.
Rare Disease Day is observed internationally on the last day of February. Its global objective is to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
The Joint Research Centre (JRC), the European Commission's in-house science service, in collaboration with the Directorate-General for Health and Consumers, are working towards establishing a European Platform on Rare Diseases Registration. The platform is conceived to provide a central access point for all registry data on rare diseases, to act as a 'hub' improving access to patient registries, as well as to promote interoperability between registries. A further important goal is to improve data comparability, reliability and harmonisation among rare diseases registries throughout Europe.
The creation and maintenance of the platform will be part of the EU strategy for sustainable research in this area. The JRC will work in close cooperation with the Member States and stakeholders, which include national, regional, local registry holders, research institutes, hospitals, patients' organisations, and pharmaceutical companies. The aim is to ensure full integration of data to further epidemiological research in rare diseases, as well as to guide clinical trials for specific patient groups and to steer health policy in the field. The final outcome will be to improve healthcare and the quality of life for rare disease patients.