2024-03-29T07:59:34Zhttp://repisalud.isciii.es/oai/requestoai:repisalud.isciii.es:20.500.12105/74132023-03-08T13:52:11Zcom_20.500.12105_2102com_20.500.12105_2052com_20.500.12105_2051col_20.500.12105_2104
Repisalud
author
Alonso-Ferreira, Veronica
author
Abaitua-Borda, Ignacio
author
Zurriaga, Óscar
author
Astray, Jenaro
author
Errezola Saizar, Manuel
author
Aldana-Espinal, Josefa M
author
Margolles, Mario J
author
Jiménez, Josep
author
Palomar, Joaquín A
author
Santana, Milagrosa
author
Ramalle-Gomarra, Enrique
author
Ramos, Julián M
author
Arribas Monzón, Federico Eduardo
author
Alamo-Sanz, Rufino
author
Gutiérrez-Ávila, Gonzalo
author
Galmés, Antònia
author
García-Ribes, Miguel
author
Navarro, Carmen
author
Ardanaz, Eva
author
Posada De la Paz, Manuel
funder
Instituto de Salud Carlos III
2019-03-27T16:01:06Z
2019-03-27T16:01:06Z
2014
Orphanet J Rare Dis. 2014; 9(Suppl 1): P5.
1750-1172
http://hdl.handle.net/20.500.12105/7413
10.1186/1750-1172-9-S1-P5
1750-1172
Orphanet Journal of Rare Diseases
Background
The development of a national Rare Diseases (RD) registry in Spain was launched in 2012 with the project SpainRDR, supported by the International Rare Diseases Research Consortium (IRDiRC). SpainRDR includes two different strategies: patient registries addressed to patient outcome research and population-based registries addressed to epidemiologic research, health and social planning [1]. The pilot study aims to detect the difficulties of developing the national and population-based RD registry.
spa
Rare Disease
Orphan Drug
Data Harmonization
Common Data Element
Insurance Card
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
conference paper
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URL
https://repisalud.isciii.es/bitstream/20.500.12105/7413/1/NationalRareDiseasesRegistry_2014.pdf
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NationalRareDiseasesRegistry_2014.pdf
URL
https://repisalud.isciii.es/bitstream/20.500.12105/7413/5/NationalRareDiseasesRegistry_2014.pdf.txt
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NationalRareDiseasesRegistry_2014.pdf.txt