As every year, the ERN-EuroBloodNet Board of Network (BoN) meeting represents the perfect opportunity to share with the community the ongoing actions, obtained results and future projects in which the network is focused. The 4th session has been held the past 22nd of October, and as other organized events of this year, has been performed online.
This year a total 120 of participants from Members, Affiliated and future New members of ERN-EuroBloodNet had the opportunity to listen, to ask their doubts to the speakers and to give their opinions.
The opening of the meeting was given by the Coordinators of ERN-EuroBloodNet, P Fenaux (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) and B Gulbis (CUB-Hôpital Erasme) who presented an overview of the past and future of ERN-EuroBloodNet to the audience. This year, a new call for members was launched, for this reason MM Mañú Pereira (Vall d'Hebron Barcelona Hospital Campus), Scientific Coordinator of EuroBloodNet presented in numbers an evaluation and the current status of the process. Finally, V Gutierrez (EuroBloodNet IT and dissemination manager - Vall d'Hebron Barcelona Hospital Campus) showed to the participants the new designed strategy for a better website with an improved visualization of the experts.
The rest of the talks were divided in four main areas in which EuroBloodNet is working on:
Session 1 included four lectures. The first one called EU mapping of Diagnostic Procedures: Primary Central Nervous System Lymphomas (D Malaise & C Soussain - Institut Curie, Paris) has been focused on the mapping exercise for PCNSL that is being performed in collaboration between ERN-EuroBloodNet and the Institute Curie from Paris. R Colombatti - AO Padova presented a second study where the ERN of Rare Hematological Diseases is collaborating with AO Padova for the study of the Availability of Transcranial Doppler for sickle cell disease in EU-MS. J Zajac, ERN - EuroBloodNet CPMS & eLearning Manager - CUB - ERASME presented the latest advances on the Clinical Patient Management System (CPMS) as the platform for interprofessional constulation of complex cases, while the recently established Virtual Board in Cutaneous Lymphoma was presented by M Vermeer - LUMC, Leiden.
The second group of talks were focused on the future of ERNs. On the one hand E Terol, from DG SANTE - European Commission presented the plan for the consolidation of the ERNs and their sustainability in the new EU Health Programme. On the other hand S Martin & A Papadopoulou from DG Joint Research Centre has presented the project and the EU strategy for the creation of registries for rare diseases. These expositions preceded a round table to give the opportunity to the audience to express what they expect from ERNs in long term.
The third group of talks were focused on the ERN-EuroBloodNet' aim to provide education to our community. One of the programs that has been organized is focused on Cutaneos Lymphoma . According to this, the evaluation of the Webinar program on cutaneous lymphoma for health professionals was presented to the community (M Bagot - Assistance Publique-Hôpitaux de Paris). Moreover, the next Educational actions in cutaneous lymphoma for patients currently under organizationwas presented (P Aumont - Association de Soutien et d'Information à la Leucémie Lymphoïde Chronique et la maladie de Waldenström and M Pellegrini, ERN-EuroBloodNet Educational & Patients Program Manager - Assistance Publique-Hôpitaux de Paris).
Moreover, several actions related to the Sickle Cell Disease (SCD) where patients are involved was also presented at BoN2020 with a talk called European Network of sickle cell disease patients' organizations: update (M Pellegrini, ERN-EuroBloodNet Educational & Patients Program Manager - Assistance Publique-Hôpitaux de Paris, and A Weinman - EURORDIS). Other educational actions focused on SCD were presented, as the Sickle cell disease educational patients' meetings at ASCAT (N Roy - Oxford University Hospitals NHS Foundation Trust and R Colombatti - AO Padova). Finally, all the educational material produced in ERN-EuroBloodNet are collected at the EDU Channel and will be also included in the future eLearning platform as it was explained by J Zajac - ERN-EuroBloodNet CPMS & eLearning Manager - CUB - ERASME and P Aguilar-Martínez - CHU Montpellier during their talk.
Finally the 4th BoN has finished with two presentations of two active projects in ERN-EuroBloodNet. Firstly, the presentation of the status of the project that is focused on the development of new Clinical Practice Guidelines and other Clinical Decision Support Tools (L Malcovati - Foundation IRCCS Polyclinic San Matteo, Pavia and N Roy - Oxford University Hospitals NHS Foundation Trust). Secondly, MM Mañú Pereira (ERN-EuroBloodNet Scientific Director - Vall d'Hebron Barcelona Hospital Campus) presented the development of two platform registries that have started this year in EuroBloodNet, the European rare blood disorders platform (ENROL) and Red Blood Cell -COVID19 Platform.
Slides presented are available at the ERN Collaborative platform, if you are EuroBloodNet member and have not accessed yet, you can request access through https://webgate.ec.europa.eu/ern/
Thanks to all the speakers and attendants for your valuable contributions and commitment to EuroBloodNet consolidation and to everybody who has participate in the 4th BoN!