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

Alonso-Ferreira, VeronicaAbaitua-Borda, IgnacioZurriaga, ÓscarAstray, JenaroErrezola Saizar, ManuelAldana-Espinal, Josefa MMargolles, Mario JJiménez, JosepPalomar, Joaquín ASantana, MilagrosaRamalle-Gómara, EnriqueRamos, Julián MauroArribas Monzón, Federico EduardoAlamo-Sanz, RufinoGutiérrez-Ávila, GonzaloGalmés, AntòniaGarcía-Ribes, MiguelNavarro, CarmenArdanaz, EvaPosada De la Paz, Manuel2019-03-272019-03-272014Orphanet J Rare Dis. 2014; 9(Suppl 1): P5.1750-1172http://hdl.handle.net/20.500.12105/74137th European Conference on Rare Diseases and Orphan Products (ERCD 2014)spahttp://creativecommons.org/licenses/by/4.0/Rare DiseaseOrphan DrugData HarmonizationCommon Data ElementInsurance CardNational rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)conference paperAtribución 4.0 Internacional9(Suppl 1)P510.1186/1750-1172-9-S1-P51750-1172Orphanet Journal of Rare Diseasesopen access