RADeep will allow mapping at the European level the diagnosis methods, demography, survival rate, main clinical features and treatments of patients affected by a rare anaemia disorder in order to facilitate access to specialized and adequate healthcare and engage research and development of new treatments, thus increasing the knowledge and promoting best practices across EU.
Epidemiological data of high quality are important for engaging research and clinical trials because they can direct researchers to the available and suitable patient groups. Basic clinical information is required to describe the clinical status of patients that can comply with the inclusion criteria for a clinical trial, and on the other hand, other patients can be excluded if a registry is well-designed. Registries provide summary data that can be expanded and modified for specific research objectives.
In order to achieve RADeep aims, it is essential to have active members providing data, in order to gather the sufficient high quality data to reach the evidence required the purposes.
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 among the RAD community while ensuring transparency on the data collection.