National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
نویسندگان
چکیده
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) Verónica Alonso, Ignacio Abaitua, Óscar Zurriaga, Jenaro Astray, Manuel Errezola, Josefa M Aldana-Espinal, Mario J Margolles, Josep Jiménez, Joaquín A Palomar, Milagrosa Santana, Enrique Ramalle-Gomarra, Julián M Ramos, Federico E Arribas, Rufino Álamo, Gonzalo Gutiérrez-Ávila, Antònia Galmés, Miguel García-Ribes, Carmen Navarro, Eva Ardanaz, Manuel Posada de la Paz
منابع مشابه
National Rare Disease Registries: overview from Spain
The Spanish Rare Diseases Registries Research Network (SpainRDR) is a project aimed to build the National Rare Diseases Registry in Spain based on the input of two different methods: patient outcome research registries and population-based registries. The project has been approved within the IRDiRC framework and is co-funded by the Institute of Health Carlos III (ISCIII), the Health Departments...
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