title: Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases.
authors.forename: Mats G
authors.initials: MG
authors.lastname: Hansson
authors.forename: Marco
authors.initials: M
authors.lastname: Gattorno
authors.forename: Joanna Stjernschantz
authors.initials: JS
authors.lastname: Forsberg
authors.forename: Nils
authors.initials: N
authors.lastname: Feltelius
authors.forename: Alberto
authors.initials: A
authors.lastname: Martini
authors.forename: Nicolino
authors.initials: N
authors.lastname: Ruperto
mesh_terms: D002648:Child; D002986:Clinical Trials as Topic / Q000941:ethics*; D004992:Ethics, Medical; D005060:Europe; D006801:Humans; D010372:Pediatrics / Q000941:ethics*; D035583:Rare Diseases / Q000188:drug therapy*; D012042:Registries