EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES

ended

ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information, samples and patient mobility in Rare Hematological Diseases (RHD). Accordingly, the previously established state-of-the art on RHD needs allowed the implementation of concrete strategies for the next three years. The repository of experts and facilities will be expanded for a) obtaining accurate information on very rare haematological diseases (VRHD) and highly specialized interventions and b) increasing data robustness on members’ activity and clinical outcomes. Data exploitation will provide the evidence for elaborating Policy reports addressing needs at the national level while facilitating better use of resources. In some cases, this will lead to a cross-border issue, a legal policy report will be produced based on practical cases. Best practices will be promoted by the maintenance of the public database of international clinical practice guidelines. It will also include classification according to quality domains and assessment of implementation. Also, development of new External Quality Assessment Schemes for core laboratory tests will be promoted. Target-driven synergies will be established with educational bodies to address gaps in the most efficient manner. Different actions are contemplated channelled not only to increase multidisciplinary teams training but also to foster patients’ empowerment. In the field of inter-professional consultations, specific efforts on CPMS promotion among members will be dedicated. Epidemiological surveillance of VRHD will be facilitated by the development of GeoCodes including number of patients and diagnosis facilities. Lastly, actions will be taken to enhance members’ involvement on CTs for hardly accessible drugs for VRHD and to promote research collaborative projects.