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), ENROL aims to avoid fragmentation of data by promoting the standards for patient registries' interoperability released by the European Platform on Rare Disease Registration (EU RD Platform).
ENROL online Kick off meeting was successfully held last 2nd July with more 120 registered participants, including ERN-EuroBloodNet members, affiliated partners, candidates, EURORDIS and patients’ representatives, European Hematology Association (EHA) representatives, researchers and registries’ curators.
The meeting started with a welcome and overview of ENROL at a glance provided by the platform coordinator. Introductory presentation was followed by an overview to the EU RD Platform and tools already developed by the EC - Joint Research Centre (JRC) for the promotion of interoperability standards for rare disease registries implementation in a dedicated session provided by Simona Martin and Andri Papadopoulou from the EC - JRC.
During the first block of the Kick off meeting, ENROL implementation was detailed by the different tasks leaders including the description of the main tasks in the context of the different working packages: WP4) Connecting EU-RHD Registries and Healthcare providers for secure sharing and re-using of data, WP5) Facilitating epidemiological surveillance, research and access to new treatments for RHD, WP6) Setting-up ENROL's Platform in line with the EU-RD Platform.
During the second block of the meeting, the involvement of the different stakeholders was highlighted as fundamental pillars for the successful implementation of ENROL, including the patients, hospitals' CEOs and the legal and ethical teams. Additional collaborations as with other ERNs on rare cancer will undoubtedly be cornerstone for the alignment of common strategies to ensure the interoperability of rare disease registries.
Looking forward to consolidating the collaboration with all of you!