title: A registry of registries? The US backs the idea for patients.
authors.forename: Monica
authors.initials: M
authors.lastname: Heger
mesh_terms: D002986:Clinical Trials as Topic / Q000592:standards*; D003219:Confidentiality / Q000592:standards; D019992:Databases as Topic; D006302:Health Services Research / Q000592:standards*; D006801:Humans; D007255:Information Services / Q000592:standards*; D035583:Rare Diseases / Q000628:therapy; D012042:Registries / Q000592:standards*; D014481:United States