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HRQoL in Barth Syndrome: Agreement between Child Self-reports and Parent Proxy-reports and Its Relationship to Parental HRQoL

PURPOSE: Barth syndrome is an X-linked rare disorder that typically affects only males. This study investigates 1) agreement between child self-reports and parent proxy-reports of HRQoL in boys with Barth syndrome and 2) relationship between parental HRQoL and parent proxy-reports of HRQoL for the c...

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Pubblicato in:J Hum Clin Genet
Autori principali: Lim, Yoonjeong, Kreider, Consuelo M., Alvarez, Mary, Bendixen, Roxanna M.
Natura: Artigo
Lingua:Inglês
Pubblicazione: 2019
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Accesso online:https://ncbi.nlm.nih.gov/pmc/articles/PMC7971423/
https://ncbi.nlm.nih.gov/pubmed/33748828
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.29245/2690-0009/2019/2.1104
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