Short Communication Identifying data sources for a national population- based registry: the experience of the Spanish Rare Diseases Registry A.C. Zoni a,* , M.F. Domı´nguez Berj  on a , E. Barcel  o a , M.D. Esteban Vasallo a , I. Abaitua b , J. Jim  enez Villa c , M. Margolles Martins d , C. Navarro e,f , M. Posada b , J.M. Ramos Aceitero g , C. V  azquez Santos f , O. Zurriaga Llorens h,i , J. Astray Mochales a , Spain-RDR Group a Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain b Research Institute for Rare Disease, Institute of Health Carlos III, Madrid, Spain c Operative Planning and Evaluation Division, Health Area, Catalan Health Service (CatSalut) Autonomous Government of Catalu~ na, Spain d Epidemiology & Surveillance Service, General Directorate of Public Health, Health Department of the Autonomous Government of Asturias, Spain e Dep. of Pathology & Neuropathology, University Hospital of Vigo (CHUVI-SERGAS), Spain f Neurosciences Research Group ‘NC-CHUVI’, Instituto de Investigacion Biomedica de Vigo (IBIV), Xerencia de Xestion Integrada de Vigo e SERGAS, Spain g Sub-Directorate of Epidemiology, General Directorate of Public Health, Health Department of the Autonomous Government of Extremadura, Spain h Epidemiological Surveys & Health Statistics Service, General Directorate of Public Health, Autonomous Government of Valencia, Spain i Centre for Public Health Research (CSISP), Autonomous Government of Valencia, Spain article info Article history: Received 28 November 2013 Received in revised form 9 December 2014 Accepted 12 December 2014 Available online 16 February 2015 Background Rare Diseases (RD) are a diverse group of diseases with low prevalence (5 cases per 10,000 population), most of them chronic, with disability and premature mortality. 1 RD are considered a priority for action in the Public Health Programme of the European Union (EU). The European Commission Communication (November 11, 2008) and the recommendations of the Council of Europe and the European Parliament about RD (June 8, 2009), stressed the need for in- formation on RD and the creation of registries and a database. Based on these recommendations, several technical projects on RD are being carried out, such as EPIRARE (European Platform for Rare Disease Registries), RD-CONNECT (an inte- grated platform connecting databases, registries, biobanks and clinical bioinformatics for RD research), IRDiRC (Inter- national Rare Diseases Research Consortium), etc. 2 * Corresponding author. C/ San Martin de Porres N  6, 1ª planta, 28035 Madrid, Spain. Tel.: þ34 91 370 08 11; fax: þ34 91 426 56 25. E-mail address: anaclarazoni@gmail.com (A.C. Zoni). Available online at www.sciencedirect.com Public Health journal homepage: www.elsevier.com/puhe public health 129 (2015) 271 e275 http://dx.doi.org/10.1016/j.puhe.2014.12.013 0033-3506/© 2015 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.