Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Pa...
Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Patient-Centered Disease Concept Model
About this item
Full title
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Publisher
New York: Springer US
Journal title
Language
English
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Publication information
Publisher
New York: Springer US
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Scope and Contents
Contents
Angelman syndrome (AS) is a complex, heterogeneous, and life-long neurodevelopmental disorder. Despite the considerable impact on individuals and caregivers, no disease-modifying treatments are available. To support holistic clinical management and the development of AS-specific outcome measures for clinical studies, we conducted primary and second...
Alternative Titles
Full title
Measuring What Matters to Individuals with Angelman Syndrome and Their Families: Development of a Patient-Centered Disease Concept Model
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Record Identifier
TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8238699
Permalink
https://devfeature-collection.sl.nsw.gov.au/record/TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8238699
Other Identifiers
ISSN
0009-398X
E-ISSN
1573-3327
DOI
10.1007/s10578-020-01051-z
