PROs for RARE: protocol for development of a core patient reported outcome set for individuals with...
PROs for RARE: protocol for development of a core patient reported outcome set for individuals with genetic intellectual disability
About this item
Full title
Author / Creator
Publisher
England: BioMed Central Ltd
Journal title
Language
English
Formats
Publication information
Publisher
England: BioMed Central Ltd
Subjects
More information
Scope and Contents
Contents
Rare genetic neurodevelopmental disorders and intellectual disability (ID), collectively called genetic ID (GID), can profoundly impact daily functioning and overall well-being of affected individuals. To improve our understanding of the impact of GID and advancing both care and research, measuring relevant patient reported outcomes (PROs) is cruci...
Alternative Titles
Full title
PROs for RARE: protocol for development of a core patient reported outcome set for individuals with genetic intellectual disability
Authors, Artists and Contributors
Identifiers
Primary Identifiers
Record Identifier
TN_cdi_doaj_primary_oai_doaj_org_article_867cad4038a642219531ff65d47c129a
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_doaj_primary_oai_doaj_org_article_867cad4038a642219531ff65d47c129a
Other Identifiers
ISSN
1750-1172
E-ISSN
1750-1172
DOI
10.1186/s13023-024-03264-0
