RADeep, the Rare Anaemia Disorders European Epidemiological Platform, is an initiative conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing …

RADeep is an initiative endorsed by EuroBloodNet for pooling data from patients affected by a rare anaemia disorder. RADeep is built in line with ENROL and the EU-RD-Platform …

This information is the strictly necessary for the achievement of RADeep aims, corresponding to a set of parameters defined at the European level as "Common data elements" to all Rare …

Steering committee is in charge of defining RADeep's Study protocol including the establishment of the common data elements for rare anaemia disorders (CDE-RAD).

Creation of a research protocol for including PKD patients in RADeep, including a list of baseline indicators for disease characteristics (proof of diagnosis, demographic, laboratory, clinical, …

RADeep members will become one of the major pillars of RADeep by ensuring the provision of data to the platform, which will be listed in this section in order to enhance interanctions …

RADeep has created a European repository of centers dealing with rare anaemia disorders (RADs). The objective is to increase the searchability and findability of RADs expertise while …

RADeep general objective is to map at the European level the diagnosis methods, demography, survival rate, treatments and main clinical features of RAD patients in order to facilitate …

The RADeep ultra Rare Anemia Disorder And hereditary spheRocytosis (uRADAR) aims to increase access to new treatments and clinical trials for this group of patients.

Over the next few months, RADeep is expecting to collect more data. The registry aims to map at the European level the diagnostic methods, demography, survival rate, main clinical features …