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ERN - Call for registries

The EU Commission launched a call for Rare disease registries for the European Reference Networks with a deadline in October. The ERN-EYE management team submitted proposal on 10th October. It is indeed a subject that is particularly important for the network and one of our most important mission.

The proposed action aims to support the development of rare disease registries for the ERNs. Patient registries and databases constitute key instruments to develop clinical research in the field of rare diseases, to improve patient care and healthcare planning. They are the best way of pooling data to achieve a sufficient sample size for epidemiological and/or clinical research. Registries serve as a recruitment tool for the launch of studies focusing on disease etiology, pathogenesis, diagnosis or therapy.

 

More information about this call

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