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

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

Abstract 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...

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Bibliographic Details
Main Authors: Dalibor Stanimirovic, Eva Murko, Tadej Battelino, Urh Groselj
Format: Article
Language:English
Published: BMC 2019-07-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Rare diseases
Pilot rare disease registry
National rare disease registry
Rare disease ecosystem
Case study
Focus group
Online Access:http://link.springer.com/article/10.1186/s13023-019-1146-x

Internet

http://link.springer.com/article/10.1186/s13023-019-1146-x

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