We are very glad to announce that the European Rare Blood Disorders Platform (ENROL) has officially started last 1st June 2020, conceived in the core of ERN-EuroBloodNet as an umbrella for both new and already existing registries on rare hematological disorders (RHD) with the aims to avoid fragmentation of data by promoting the standards for patient registries' interoperability released by the EU RD platform.
ENROL will map at the EU level demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments in order to obtain epidemiological figures and identify trial cohorts for basic and clinical research. To this aim, ENROL will connect and facilitate upgrading of existing RHD registries, while promoting the building of new ones when / where lacking. Target-driven actions will be carried-out in collaboration with EURORDIS for educating patients and families about the benefits of enrolment in such registries.
ENROL is coordinated by ERN-EuroBloodNet Scientific Director, Dr Maria del Mar Mañú Pereira (Vall d'Hebron University Hospital (HUVH) - Vall d'Hebron University Hospital Foundation - Research Institute (VHIR), Barcelona, Spain). Consortium is completed with Prof. Béatrice Gulbis (Erasme University Hospital (ERASME) / LHUB-ULB, Brussels, Belgium), Prof Pierre Fenaux (Assistance Publique - Hopitaux de Paris (AP-HP), Paris, France) and Prof. Marina Kleanthous (The Cyprus Foundation for muscular dystrophy research (CING), Nicosia, Cyprus). ENROL is co-funded by the European Commission - Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) under the call for proposals HP-PJ-2019 on Rare disease registries for the European Reference Networks.
ENROL online kick off meeting will take place next 2nd July 15:15 – 17:15 (CEST), aiming to present the frame and main objectives of ENROL in the context of rare diseases and ERNs, as well as key points where ERN-EuroBloodNet members, affiliated partners, and other stakeholders contribution will be crucial for ENROL implementation and success.
We will be honored to count with the presence of Simona Martin and Andri Papadopoulou from the EC - Joint Research Centre, who will provide an overview on the aims of the EU RD Platform and tools developed for ensuring RD registries interoperability.