A systematic overview of rare disease patient registries: challenges in design, quality management,...
A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance
About this item
Full title
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Publisher
England: BioMed Central Ltd
Journal title
Language
English
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Publication information
Publisher
England: BioMed Central Ltd
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Scope and Contents
Contents
Patient registries serve to overcome the research limitations inherent in the study of rare diseases, where patient numbers are typically small. Despite the value of real-world data collected through registries, adequate design and maintenance are integral to data quality. We aimed to describe an overview of the challenges in design, quality manage...
Alternative Titles
Full title
A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance
Authors, Artists and Contributors
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Record Identifier
TN_cdi_doaj_primary_oai_doaj_org_article_f94304cb55db4477af73a277955f4e89
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_f94304cb55db4477af73a277955f4e89
Other Identifiers
ISSN
1750-1172
E-ISSN
1750-1172
DOI
10.1186/s13023-023-02719-0
