Vall d’Hebron coordinates the European Rare Blood Disorders Platform (ENROL), the pan-European patient registry of the European Reference Network ERN-EuroBloodNet, aiming at grouping sufficient data of patients affected by rare haematological diseases in order to promote research and perform epidemiological surveillance. By the end of May, a closing meeting was organised to wrap up the first phase of the project, where one hundred participants, including physicians, patients associations’ representatives, and institutional stakeholders, from 15 EU Member States participated, showing the growing interest for this initiative.

During the first three years of its implementation, the ENROL registry has been co-funded by the Health Programme of the European Union (GA 947670) and led by a European Consortium coordinated by Vall d'Hebron University Hospital and Vall d’Hebron Research Institute (VHIR) (with Maria del Mar Mañú Pereira) together with Hôpital Erasme - Université Libre de Bruxelles (ERASME / LHUB-ULB) in Belgium (with Béatrice Gulbis), the Cyprus Institute of Neurology and Genetics (CING) (with Petros Kountouris), and Assistance Publique - Hôpitaux de Paris (AP-HP), Hôpital Saint-Louis in France (with Pierre Fenaux).

Over the course of the half day online meeting, an overview of the extensive work done so far was presented. As it can be challenging to gather sufficient data from rare disease patients, ENROL developed a strategy to connect and facilitate the upgrade of existing rare haematological diseases registries in Europe, while promoting the building of new ones when / where lacking.

Following this strategy, ENROL managed to connect with RADeep, the Rare Anaemia Disorders European Epidemiological Platform, and to promote the creation of two new sub-registries in two domain specific areas: EU-Blast (European Blastic Plasmacytoid Dendritic Cell Neoplasm Network) and TWIST (von Willebrand Disease).

In addition, ENROL positioned itself as a key player in Europe for strengthening the use and re-use of health data on rare haematological diseases for the provision of best healthcare and research, by collaborating with following EU funded projects linked to the re-use of patients data:

• IMPACT-AML: Master Framework and Pragmatic Clinical Trial for Relapse or Refractory Acute Myeloid Leukemia, coordinated by Giovanni Martinelli at IRCCS Istituto Romagnolo per lo Studio dei Tumori "Dino Amadori" -IRST S.r.l. in Italy
• GenoMed4ALL: Genomics and Personalized Medicine for all though Artificial Intelligence in Haematological Diseases coordinated by Federico Álvarez from Universidad Politecnica Madrid (use cases: Sickle Cell Disease, and Myelodysplastic syndromes)
• SYNTHEMA: Synthetic generation of haematological data over federated computing frameworks coordinated by Federico Álvarez from Universidad Politecnica Madrid (use cases: Sickle Cell Disease and Myelodysplastic syndromes)

In the next phase of its implementation, ENROL will continue the collection of data, but also share data (anonymised and pseudonymised patient-level data) with allowed third parties in order to provide to researchers and stakeholders the opportunity to benefit from the work done. A Data Access Committee (DAC) has been established and will assess data requests.

The researchers are confident the next phase of the ENROL project will contribute to improving the life and condition of patients in Europe affected by rare haematological diseases.