Check the 3rd Board of Network meeting Outcomes report and slides! 4th BoN meeting will be held 22-23 October in Paris - SAVE THE DATE!!
3rd ERN-EuroBloodNet Board of Network meeting was held last 13 and 14 November in Vall d'Hebron University Hospital, Barcelona, with the participation of more than 80 attendants and important new projects proposed for the upcoming period, check them!
As you already know, the 3rd ERN-EuroBloodNet Board of Network meeting was held last 13 and 14 November in Vall d'Hebron University Hospital, Barcelona, with the participation of more than 80 attendants.
Given the consolidation phase that ERNs are facing, the meeting counted with a Plenary Session and Round table on European Reference Networks (ERNs) Consolidation & Sustainability with the valuable contributions of Yolima Cossio (Director of Information Systems in Vall d'hebron Barcelona Hospital Campus), Enrique Terol (DG SANTE - European Commission) and Claudio Carta (EJP WP 14 leader). In addition, the meeting included two Parallel Sessions where the main actions and results implemented by the network were presented by the projects coordinators finalizing with key questions to be discussed by the audience divided into areas of expertise.
We are glad to summarize below the key outcomes from the meeting. Please find below the report of the outcomes for further details:
- A central repository of reliable sources of information on expertise available at both national and European level in RHDs will be built based on RHDs disease or disease groups (RHD-DGs), established on the analysis of codification schemes (ORPHA and ICD) for definition of rare diseases. The first RHD-DGs proposed were reviewed by the audience. EuroBloodNet experts with profile created are searchable by their area of expertise through the expert search tool.
- EuroBloodNet Thursdays webinars has been launched, check and register! New webinars topics were identified during the parallel sessions that will be cover in the coming months
- Clinical Patient Management Platform (CPMS) Helpdesk for supporting health professionals in the sharing of interprofessional consultations is already available
- ENROL, the European Rare Blood Disorders Platform, has been recently officially granted by the EC! conceived in the core of EuroBloodNet, ENROL will become the umbrella for both new and already existing registries on rare haematological disorders
- Guidelines and recommendations compiled has been classified into Quality Domains and will be soon available at EuroBloodNet website.
- Paroxysmal nocturnal haemoglobinuria (PNH) Aplastic Anaemia (AA) Preceptorships program is already full with a total of 14 participants that will benefit from this initiative. For the second year, Sickle Cell Disease (SCD) has been identified has an area of short stays' program intervention.
- For the 3rd year EuroBloodNet is presenting actions carried out for patients' activities: the establishment of the repository of educational material for patients, the establishment of an EU Network for SCD patients' organization, an educational training for SCD patients and Webinars programs for patients.
- A Cutaneous Lymphoma Task force has been created for organizing webinars for expert patients and Patient Organizations.
Moreover, the following new projects have been identified:
- European mapping on availability of Transcranial Doppler for SCD, of T2*MRI for assessment of iron overload for beta- thalassaemia, and of gene therapy for beta - thalassaemia
- European mapping on availability of CAR-T cell therapy, and of diagnostic procedures, treatment and follow-up of primary intra-ocular lymphomas
- Setting up an inventory of available EQAs for RHDs
- Development of new External Quality Assessment for hepcidin assay and EMA Binding test
- A joint project proposal on "An international pharmaco-epidemiological registry focused on patients with acute leukemias of ambiguous lineage (ALAL), demographic characteristics, treatment options and their effectiveness"
- Creation of educational material for patients in collaboration with experts. First target is Methemoglobinemia.
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/
If you are not an EuroBloodNet member and are interested in getting the slides please contact victoria.gutierrez@vhir.org
Thanks to all the speakers and attendants for your valuable contributions and commitment to EuroBloodNet consolidation!!
4th ERN-EuroBloodNet BoN meeting will be held 22nd and 23rd of October in Paris - SAVE THE DATE!