Check the ERN-EuroBloodNet 6th Progress meeting outcomes!
ERN-EuroBloodNet 6th Progress meeting was held 21st November 2024 online, including a Plenary session on ERNs and Joint partnerships and different sessions on ERN-EuroBloodNet flieds of action
ERN-EuroBloodNet 6th Progress meeting was held 21st November 2024 online. 170 participants from 64 ERN-EuroBloodNet Healthcare providers and 14 EU Member States registered to the meeting.
The meeting counted with a Plenary Session on ERNs and Joint partnerships with the valuable contributions of
- Luca Sangiorgi, Coordinator of the ERN on rare bone diseases (ERN-BOND) and current Coordinator of the ERNs Coordinators group who presented the European Reference Networks state of play.
- Till Voigtländer, Coordinator of the Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN), presented the JARDIN action general aims and how will improve the accessibility of the ERNs for people living with rare diseases in EU.
- Ana Rath, ORPHANET director and pillar leader on the European Rare Disease Research Alliance (ERDERA), presented the data services developed for RD research in the European Joint Programme on Rare Diseases (EJP-RD) and their expansion and consolidation under ERDERA.
The following sessions tackled the ERN-EuroBloodNet main areas of developement:
ERN-EuroBloodNet is developing Clinical Practice Guidelines (CPGs) and other Clinical Decision Support Tools (CDSTs) in the field of rare hematological diseases (RHD) in collaboration with the EC and the main hematologic networks and associations. The status of ERN-EuroBloodNet CPGs and CDSTs over 2024 was shown to the audience.
Main results from the ERN-EuroBloodNet educational actions ongoing were presented into two main targets:
- Health professionals including expert training, case discussions, and access to cutting-edge guidelines to improve rare hematological care
- Patients developing tools and programs that empower them through education, enabling better disease understanding and management. Kind of programs are advocacy training, patient therapeutic education and Public Patient involvement in research.These efforts bridge the gap between expertise and patient needs.
Session on Cross border health included relevant presentations for the new CPMS 2.0, engines to increase the searchability of ERN-EuroBloodNet healthcare providers and health professionals expertise and activity including Disease Cards and Repository of RHD experts and facilities and ERN-EuroBlooNet Patients Assistance Infopoint.
Session on Data driven research and innovative therapies tackled the relevance of formation of ERN registries along with national and patient-driven RD registries to offer significant potential for therapeutic innovation. The role of Real World Evidence in enriching benefit-risk evaluations, underscoring its capacity to augment traditional trial findings and inform healthcare decisions was also discussed with the audience.
The European Rare Blood Disorders Platform (ENROL) Registry Module for the Collection of annual counts of RHDs patients (EpiBlood) aims to systematically collect standardized information on the annual counts of patients with RHDs through a secured REDCap system. Next data collection exercise for year 2024 will start 1st February 2025 until 28th February 2025.
The session on fair pricing in hematology allowed the discussion on the meaning of fair from the clinicians and patients perspective as well as the tools needed to improve the decision making on pricing and reimbursement.
Lastly, ERN-EuroBloodNet sponsored clinical trials (Mitapivat in red blood cell membranopathies and Luspatercept in rare inherited anemias) were also presented together with RealiseD, an IHI project starting in January 2025 enhancing clinical trials for RD through a collaborative, patient-centered approach.
Check the full Outcome report!
Thanks to all for your participation and contribution to ERN-EuroBloodNet!
