ERN-EuroBloodNet at the ERICA 2nd General Assembly 20-22 June 2022, Bologna, Italy
The ERN-EuroBloodNet is co-leader of the ERICA WP3, Patient-Centered Research of the European Rare Disease Research Coordination and Support Action (ERICA).
All the ERICA beneficiaries, ERN representatives, Expert Group members, Advisors and partners participated from June 20th to 22nd in the 2nd ERICA Assembly, a face-to-face symposium held in Bologna, Italy. The progress of the ERNs related Research activities in Europe and the outcomes achieved in each WP-Specific Expert Working Group session have been the central topics of this General Assembly.
The ERN-EuroBloodNet is the co-chair of the WP3. María del Mar Mañú Pereira (ERN-EuroBloodNet Scientific Director & ENROL Coordinator, Hospital Universitari Vall d'Hebron) is coordinating "WP3 Patient Centred Research" in collaboration with Ana Rath (Orphanet). Mariangela Pellegrini (Assistance Publique-Hôpitaux de Paris, Hôpital Saint-Louis) is also part of the team as ERN Educational & Patients Program Manager, as well as, Gavin McDonough (Orphanet), Benoit Arnould (Mapi Research Trust / ICON) and Céline Desvignes-Gleizes (Mapi Research Trust / ICON).
The WP3 "Patient Centered Research in Rare Diseases" aims to define priority areas for future Patient Reported Outcome Measures (PROMs) development, support ERNs in the implementation of validated instruments for PROMs and to create a central repository of validated common and domain specific Rare Diseases PROMs for ERNs.
During the Symposium an overview of the WP3 has been presented to the audience, showing objective and results achieved so far. In a nutshell, the first version of the central repository of validated common and domain specific Rare Diseases PROMs for ERNs has collected 672 PROMs, of which 150 have been identified via the ERNs Survey on Available PROs and ObsRO for Rare diseases.