RADeepgeneral objective is to map at the European level the diagnosis methods, demography, survival rate, treatments and main clinical features of RA patients in order to facilitate research on RA 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 RAs 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 the RADeep:
- To establish a legal frame for RADeep secure sharing and re-use of Findable, Accessible, Interoperable, Reusable (FAIR) Data on patients affected by RAs 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 a dynamic accessible inventory on HCPs and health professionals leading with RAs and on available sources of epidemiological data on RAs including 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 fostering the expansion and use of the international codifications ICD, ORPHA, SNOMED and HPO and the creation of a global uniqueidentifier (GUID) for patients affected by rare diseases allowing interoperability and avoiding duplication or fragmentation of data.
- To engage research community and industry to promote -OMICS based research on drug-able targets and clinical trials by the identification of groups of patients with confirmed diagnosis of RAs 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 RAs.