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 research on RAD and development of new treatments and clinical trials. Thus, increasing the knowledge and promoting best practices for these rare hematological conditions.
For this, RADeep aims to set up a European registry of patients affected by RAD including reference centres and health professionals, proof of diagnosis, demographics, clinical data and laboratory data in agreement with European recommendations for patients' registries and ensuring interoperability (e.g. Codification ICD, HPO) with European structures fostering research (Eurobiobank and -OMICS).
Specific Objectives for RADeep:
- To establish a legal frame for RADeep secure sharing and re-use of Findable, Accessible, Interoperable, Reusable (FAIR) Data on patients affected by RAD enabling both entering certified medical data from available sources and re-use of data with third parties, namely other ERNs, research community and industry.
- To enable participation in RADeep through the setting up of European disease specific Network of centers dealing with RAD and existing public and private registries of patients and preventive programmes.
- To promote interoperability of data in line with the European Union Rare Diseases platform for registries by a) fostering the expansion and use of the international codification schemes ICD, ORPHA, SNOMED and HPO and b) incorporating the use of a pseudonymisation tool GDPR-compliant provided by the EU RD Platform for the generation of rare disease patients’ pseudonyms.
- To engage research community to promote -OMICS based research on drug-able targets and clinical trials by the identification of groups of patients with confirmed diagnosis of RAD and with common demographics and primary clinical disease manifestations.
- To promote best practices sharing by enabling patients and doctors to access to adequate diagnosis methods through ERN-EuroBloodNet network and fostering the creation of guidelines and external quality assessment programs for RAD.