title: [Disease registries in the epidemiological researching of rare diseases in Spain].
abstract: BACKGROUND
  The use of tools such as disease registries poses a problem in the case of rare diseases. This study is aimed at describing the current situation concerning rare disease registries in Spain.
  
  
  METHODS
  The information provided by two Spanish health registries directories prepared by the Spanish Health Assessment Technologies Agencies are employed, a descriptive cross-sectional study being conducted. The registries identified in these directories has been classified as: (1) "Specific rare diseases" (2) "Unspecific but with information on rare disease and (3) "Non-informative regarding rare diseases".
  
  
  RESULTS
  The 2000 directory listed 82 registries, 15.8% of which were classified under Group 1, whilst a total of 107 registries, 16.8% in Group 1, were identified in the 2005 review. The main health registries in Group 2, by topic, were: cancer, mortality, psychiatry and nephrology. No general rare disease registries were found in the directories.
  
  
  CONCLUSIONS
  Although few in number, health registries do exist in Spain including information on rare diseases. Areas have been identified by topic lacking registries and also information systems or registries unidentified in the sources used. Continuing efforts must be made to improve the information available on rare diseases.
authors.affiliation: Servicio de Estudios Epidemiológicos y Estadísticas Sanitarias, Conselleria de Sanitat, Generalitat Valenciana, Valencia. zurriaga_osc@gva.es
authors.forename: Oscar
authors.initials: O
authors.lastname: Zurriaga Lloréns
authors.forename: Carmen
authors.initials: C
authors.lastname: Martínez García
authors.forename: Vanessa
authors.initials: V
authors.lastname: Arizo Luque
authors.forename: Maria José
authors.initials: MJ
authors.lastname: Sánchez Pérez
authors.forename: Julián Mauro
authors.initials: JM
authors.lastname: Ramos Aceitero
authors.forename: Maria José
authors.initials: MJ
authors.lastname: García Blasco
authors.forename: Maria José
authors.initials: MJ
authors.lastname: Ferrari Arroyo
authors.forename: Lilisbeth
authors.initials: L
authors.lastname: Perestelo Peréz
authors.forename: Enrique
authors.initials: E
authors.lastname: Ramalle Gómara
authors.forename: Maria Luisa
authors.initials: ML
authors.lastname: Martínez Frías
authors.forename: Manuel
authors.initials: M
authors.lastname: Posada de la Paz
mesh_terms: D003430:Cross-Sectional Studies; D015340:Epidemiologic Research Design; D006801:Humans; D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries; D013030:Spain / Q000453:epidemiology