title: National registries of rare diseases in Europe: an overview of the current situation and experiences.
abstract: The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU.
authors.affiliation: National Centre for Rare Diseases, National Institute of Health, Rome, Italy.
authors.forename: Domenica
authors.initials: D
authors.lastname: Taruscio
authors.forename: Luciano
authors.initials: L
authors.lastname: Vittozzi
authors.forename: Remy
authors.initials: R
authors.lastname: Choquet
authors.forename: Ketil
authors.initials: K
authors.lastname: Heimdal
authors.forename: Georgi
authors.initials: G
authors.lastname: Iskrov
authors.forename: Yllka
authors.initials: Y
authors.lastname: Kodra
authors.forename: Paul
authors.initials: P
authors.lastname: Landais
authors.forename: Manuel
authors.initials: M
authors.lastname: Posada
authors.forename: Rumen
authors.initials: R
authors.lastname: Stefanov
authors.forename: Christiane
authors.initials: C
authors.lastname: Steinmueller
authors.forename: Elfriede
authors.initials: E
authors.lastname: Swinnen
authors.forename: Herman
authors.initials: H
authors.lastname: Van Oyen
mesh_terms: D016208:Databases, Factual / Q000592:standards*; D003695:Delivery of Health Care / Q000379:methods / Q000458:organization & administration; D005060:Europe / Q000453:epidemiology; D005062:European Union / Q000706:statistics & numerical data*; D006801:Humans; D007391:International Cooperation; D009937:Organizational Objectives; D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries / Q000592:standards*