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Title:

Assessing the Burden on Caregivers of MECP2 Duplication Syndrome.

Document type:
Article; Journal Article; Research Support, Non-U.S. Gov't
Author(s):
Ak, Muharrem; Akturk, Zekeriya; Bowyer, Kristina; Mignon, Laurence; Pasupuleti, Sasidhar; Glaze, Daniel G; Suter, Bernhard; Pehlivan, Davut
Abstract:
BACKGROUND: MECP2 duplication syndrome (MDS) is a rare neurogenetic disorder characterized by severe neurodevelopmental disorder, refractory epilepsy, recurrent infections, and functional gastrointestinal problems. Because of the significant clinical problems and lifelong disability of children with this disorder we hypothesized that the burden on parents/caregivers of these children is significant. However, there are no reports of the impact on caregivers of individuals with MDS. METHODS: We de...     »
Journal title abbreviation:
Pediatr Neurol
Year:
2022
Journal volume:
133
Pages contribution:
1-8
Fulltext / DOI:
doi:10.1016/j.pediatrneurol.2022.05.008
Pubmed ID:
http://view.ncbi.nlm.nih.gov/pubmed/35716604
Print-ISSN:
0887-8994
TUM Institution:
Lehrstuhl für Allgemeinmedizin (Prof. Schneider) (keine SAP-Zuordnung!)
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