ERN-EuroBloodNet at the General Assembly of the European Rare Disease Research Coordination and Support Action consortium (ERICA)
The ERN-EuroBloodNet presented in Madrid the results & next steps of the WP3 Patient-Centred Research in Rare Diseases.
The ERICA 3rd General Assembly was held in Madrid between the 6th and 7th of July as a face-to-face meeting. It was hosted by Servicio Madrileno de Salud- Hospital Universitario La Paz (SERMAS-HULP), the Coordination office of ERN-TransplantChild.
ERICA is a consortium of transdisciplinary research groups representing the 24 ERNs, aiming to integrate all ERNs innovation and research capacity and to increase its impact in Europe.
Among the speakers, the Working Package leaders of WP3, María del Mar Mañú Pereira (ERN-EuroBloodNet Scientific Director and ENROL Coordinator) and Ana Rath (Orphanet), have presented the "WP3 Patient Centred Research in Rare Diseases" together with the WP3 coordination team formed by Mariangela Pellegrini (ERN-EuroBloodNet Educational & Patients Program Manager), Gavin McDonough (Disability Project Manager at Orphanet) and Céline Desvignes-Gleizes (Patient-Centered Outcome Specialist at Mapi Research Trust/ICON).
Specifically, the ERICA WP3's key goal is to promote and disseminate in Europe the adoption of standardized Patient Reported Outcome Measures (PROMs) for rare diseases while ensuring the involvement of the ERNs Health care providers and RDs patients organizations in this process.
WP3 is facilitating via the creation of the repository of existing PRO and ObsRO for rare diseases the use of those standardized tools that consider patients' and caregivers' perspectives in reporting health outcome measures and in the health assessment decision-making process for rare diseases. The methodology for the constitution and future evolution of the repository can be found in deliverable 3.1 and deliverable 3.2