The DM-scope registry: a rare disease innovative framework bridging the gap between research and med...
The DM-scope registry: a rare disease innovative framework bridging the gap between research and medical care
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Publisher
England: BioMed Central Ltd
Journal title
Language
English
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Publisher
England: BioMed Central Ltd
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Scope and Contents
Contents
The relevance of registries as a key component for developing clinical research for rare diseases (RD) and improving patient care has been acknowledged by most stakeholders. As recent studies pointed to several limitations of RD registries our challenge was (1) to improve standardization and data comparability; (2) to facilitate interoperability be...
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Full title
The DM-scope registry: a rare disease innovative framework bridging the gap between research and medical care
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TN_cdi_doaj_primary_oai_doaj_org_article_ac011eacc0934331b7b12f39f99c2978
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_ac011eacc0934331b7b12f39f99c2978
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ISSN
1750-1172
E-ISSN
1750-1172
DOI
10.1186/s13023-019-1088-3
