ERN-EuroBloodNet registry showcased at the ERDERA General Assembly Meeting
Dr María del Mar Mañú Pereira, Co-Coordinator of ERN-EuroBloodNet, presented the network's registry and data work in two sessions of ERDERA's third General Assembly Meeting in Coimbra, Portugal.
The European Rare Diseases Research Alliance (ERDERA) held its third General Assembly Meeting (GAM) in Coimbra, hosted by the University of Coimbra. Over three days, partners reviewed the alliance's second year and set the priorities for a more integrated, delivery-focused third year, with a strong emphasis on how ERDERA's data, research and expertise services can work together to support researchers, clinicians and patient communities.
ERN-EuroBloodNet was represented by Dr Mar Mañú Pereira, who contributed to two sessions focused on connecting data and clinical research:
In Session 6, she presented ERN-EuroBloodNet registries and the ERDERA Data Services Hub: a 360º use case covering from FAIR data to federated clinical research.
Her presentation showed how ERN-EuroBloodNet's registry ecosystem, built around ENROL, the European Rare Blood Disorders Platform, and RADeep, the Rare Anaemia Disorders European Epidemiological Platform, serves as a complete use case for the ERDERA Data Services Hub: from collecting data according to FAIR principles and common interoperability standards, to making it available for research across institutions and countries.
In Session 14, she presented the ERN-EuroBloodNet Federated Analysis Framework, the network's approach to analysing data from multiple sources without the need to centralise patient-level information. Federated analysis allows research questions to be answered across registries and countries while patient data remain under the control of the institutions that hold them, an essential step for rare haematological diseases, where patients are few and widely dispersed.
ERN-EuroBloodNet's role in ERDERA
ERN-EuroBloodNet has been involved in ERDERA since the partnership was launched in September 2024. Through the Vall d'Hebron Research Institute (VHIR), as part of the ERN-EuroBloodNet coordination, the network contributes to several ERDERA work packages and coordinates two European registry platforms: ENROL and RADeep.
Within ERDERA, Dr Mar Mañú leads the work package on clinical outcomes research (WP10) and contributes to WP9, bringing her extensive experience in rare hematological diseases, patient registries and patient-reported outcomes.