The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

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http://www.wikidata.org/entity/Q33789033
The EMBARC European Bronchiectasis Registry: protocol for an international observational studyAn overview of international literature from cystic fibrosis registries. Part 5: Update 2012-2015 on lung disease.Update of literature from cystic fibrosis registries 2012-2015. Part 6: Epidemiology, nutrition and complications.Minimum data set for cystic fibrosis registry: a case study in iran.Nationwide genetic analysis for molecularly unresolved cystic fibrosis patients in a multiethnic society: implications for preconception carrier screening.Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.Global impact of bronchiectasis and cystic fibrosis.Consensus on the criteria needed for creating a rare-disease patient registry. A Delphi study.Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.Parents as equal partners in the paediatric cystic fibrosis multidisciplinary team.Creating longitudinal datasets and cleaning existing data identifiers in a cystic fibrosis registry using a novel Bayesian probabilistic approach from astronomyCystic Fibrosis Mortality in Childhood. Data from European Cystic Fibrosis Society Patient RegistryRare disease registries: potential applications towards impact on development of new drug treatments
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The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

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http://www.wikidata.org/entity/Q33789033
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2014 nî lūn-bûn
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2014 թուականի Յունիսին հրատարակուած գիտական յօդուած
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2014 թվականի հունիսին հրատարակված գիտական հոդված
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2014年の論文
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2014年学术文章
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2014年学术文章
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2014年学术文章
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2014年学术文章
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2014年学术文章
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2014年學術文章
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name
The European Cystic Fibrosis S ...... to sustain a disease registry.
@ast
The European Cystic Fibrosis S ...... to sustain a disease registry.
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type
label
The European Cystic Fibrosis S ...... to sustain a disease registry.
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The European Cystic Fibrosis S ...... to sustain a disease registry.
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prefLabel
The European Cystic Fibrosis S ...... to sustain a disease registry.
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The European Cystic Fibrosis S ...... to sustain a disease registry.
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The European Cystic Fibrosis S ...... to sustain a disease registry.
@en
P2093
P2860
P2888
P304
P31
P356
P478
P577
P5875
P6179
P698
P921
P932