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 European patients' registries in rare anaemia disorders (RAD).
Ensuring interoperability with European structures fostering research; RADeep will allow mapping at the European level the diagnosis methods, demography, survival rate, main clinical features and treatments of RAD patients in order to improve access to specialized and adequate health care and facilitate research and development of new treatments, thus increasing the knowledge and promoting best practices across EU.Learn More
SECURE SHARING AND RE-USE OF INFORMATION
EUROPEAN LEVEL INTEROPERABILITY
HIGH QUALITY DATA FOR RARE ANAEMIAS RESEARCH
MAXIMUM PUBLIC BENEFIT FROM DATA COLLECTED
RADeep's main goal is to maximize public benefit from data on RAD opened-up through the platform with the only restriction needed to guarantee patient's rights and confidentially in agreement with EU regulations for cross-border sharing of clinical data.Our Objectives
University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona, Spain.
Hopital ERASME, Brussels, Belgium. RADeep President.
Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. RADeep Platform developer.
University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona, Spain. Biostatistician.
Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. RADeep Platform manager.
Azienda Ospedaliera di Padova, Italy. Platform protocol for re-use of data.
Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Italy. Platform protocol for re-use of data.
University Medical Center Utrecht, The Netherlands. Platform protocol for re-use of data.
Associazione Ligure Thalassemici Onlus, Italy. Patient representative.
Stichting Zeldzame Bloedziekten, The Netherlands. Patient representative.