title: Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry.
authors.affiliation: Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain. Electronic address: anaclarazoni@gmail.com.
authors.forename: A C
authors.initials: AC
authors.lastname: Zoni
authors.affiliation: Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain.
authors.forename: M F
authors.initials: MF
authors.lastname: Domínguez Berjón
authors.affiliation: Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain.
authors.forename: E
authors.initials: E
authors.lastname: Barceló
authors.affiliation: Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain.
authors.forename: M D
authors.initials: MD
authors.lastname: Esteban Vasallo
authors.affiliation: Research Institute for Rare Disease, Institute of Health Carlos III, Madrid, Spain.
authors.forename: I
authors.initials: I
authors.lastname: Abaitua
authors.affiliation: Operative Planning and Evaluation Division, Health Area, Catalan Health Service (CatSalut) Autonomous Government of Cataluña, Spain.
authors.forename: J
authors.initials: J
authors.lastname: Jiménez Villa
authors.affiliation: Epidemiology & Surveillance Service, General Directorate of Public Health, Health Department of the Autonomous Government of Asturias, Spain.
authors.forename: M
authors.initials: M
authors.lastname: Margolles Martins
authors.affiliation: Dep. of Pathology & Neuropathology, University Hospital of Vigo (CHUVI-SERGAS), Spain; Neurosciences Research Group 'NC-CHUVI', Instituto de Investigación Biomédica de Vigo (IBIV), Xerencia de Xestión Integrada de Vigo - SERGAS, Spain.
authors.forename: C
authors.initials: C
authors.lastname: Navarro
authors.affiliation: Research Institute for Rare Disease, Institute of Health Carlos III, Madrid, Spain.
authors.forename: M
authors.initials: M
authors.lastname: Posada
authors.affiliation: Sub-Directorate of Epidemiology, General Directorate of Public Health, Health Department of the Autonomous Government of Extremadura, Spain.
authors.forename: J M
authors.initials: JM
authors.lastname: Ramos Aceitero
authors.affiliation: Neurosciences Research Group 'NC-CHUVI', Instituto de Investigación Biomédica de Vigo (IBIV), Xerencia de Xestión Integrada de Vigo - SERGAS, Spain.
authors.forename: C
authors.initials: C
authors.lastname: Vázquez Santos
authors.affiliation: Epidemiological Surveys & Health Statistics Service, General Directorate of Public Health, Autonomous Government of Valencia, Spain; Centre for Public Health Research (CSISP), Autonomous Government of Valencia, Spain.
authors.forename: O
authors.initials: O
authors.lastname: Zurriaga Llorens
authors.affiliation: Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain.
authors.forename: J
authors.initials: J
authors.lastname: Astray Mochales
mesh_terms: D003625:Data Collection; D006801:Humans; D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries; D013030:Spain / Q000453:epidemiology