National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)

Abstract

National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) Veronica Alonso, Ignacio Abaitua, Oscar Zurriaga, Jenaro Astray, Manuel Errezola, Josefa M Aldana-Espinal, Mario J Margolles, Josep Jimenez, Joaquin A Palomar, Milagrosa Santana, Enrique Ramalle-Gomarra, Julian M Ramos, Federico E Arribas, Rufino Alamo, Gonzalo Gutierrez-Avila, Antonia Galmes, Miguel Garcia-Ribes, Carmen Navarro, Eva Ardanaz, Manuel Posada de la Paz