March 23, 2015
Patient registries and databases constitute key instruments to develop clinical research in the field of rare diseases, to improve patient care and healthcare planning. Additionally, registries of patients treated with orphan drugs are relevant as they allow post marketing authorisation monitoring. An updated report of the Rare Disease Registries in Europe on the information collected by Orphanet so far, on registries collecting data for a specific disease or a group of diseases is now available online.
Also updated is the List of research infrastructures useful to rare diseases in Europe. This includes a description of 39 centres across 10 European countries.