• PKDeep
    The first phase of RADeep implementation, focused on Pyruvate Kinase Deficiency (PKD), the most common cause of chronic non spherocytic haemolytic anaemia.
  • RADeep will map European rare anaemia patients' data
    aiming to improve access to specialised and adequate healthcare, facilitate research and development of new treatments, including clinical trials.
  • RADeep
    The Rare Anaemia Disorders European Epidemiological Platform

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

Rare Anaemia Disorders European Epidemiological Platform

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

Our team

Béatrice Gulbis

Hopital ERASME, Brussels, Belgium. RADeep President.

Marina Kleanthous

Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. RADeep Platform developer.

María del Mar Mañú Pereira

University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona, Spain. RADeep Platform coordinator.

Victoria Gutiérrez Valle

University Hospital Vall d'Hebron - Vall d'Hebron Research Institute, Barcelona, Spain. Data Management & Statistics

Petros Kountouris

Cyprus Institute of Neurology and Genetics, Nicosia, Cyprus. RADeep Platform developer, Data Management & Statistics

Raffaella Colombatti

Azienda Ospedaliera di Padova, Italy. Platform protocol for re-use of data.

Paola Bianchi

Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Italy. Platform protocol for re-use of data.

Eduard van Beers

University Medical Center Utrecht, the Netherlands. Platform protocol for re-use of data.

Loris Brunetta

Associazione Ligure Thalassemici Onlus, Italy. Patient representative.

Dore Peerboom

Stichting Zeldzame Bloedziekten, The Netherlands. Patient representative.