Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia

BACKGROUND: According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal the great importance of this area for the Slovenian healthc...

Descripción completa

Detalles Bibliográficos
Autores principales: Stanimirovic, Dalibor, Murko, Eva, Battelino, Tadej, Groselj, Urh
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6617557/
https://www.ncbi.nlm.nih.gov/pubmed/31288838
http://dx.doi.org/10.1186/s13023-019-1146-x

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6617557/
https://www.ncbi.nlm.nih.gov/pubmed/31288838
http://dx.doi.org/10.1186/s13023-019-1146-x

Ejemplares similares