The Genome Empowerment Scale (GEmS): An Assessment of Parental Empowerment in Families with Undiagnosed Disease

While genomic sequencing (ES/GS) has the potential to diagnose children with difficult to diagnose phenotypes, the goal should be not only a diagnosis, but also to empower parents to seek next steps for their children and to emotionally manage the outcome, whether or not a diagnosis is secured. To h...

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Detalhes bibliográficos
Publicado no:Clin Genet
Main Authors: McConkie-Rosell, Allyn, Schoch, Kelly, Sullivan, Jennifer, Cope, Heidi, Spillmann, Rebecca, Palmer, Christina G. S., Pena, Loren, Jiang, Yong-Hui, Daniels, Nicole, Walley, Nicole, Tan, Khoon Ghee, Hooper, Stephen R., Shashi, Vandana
Formato: Artigo
Idioma:Inglês
Publicado em: 2019
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Article
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6983919/
https://ncbi.nlm.nih.gov/pubmed/31448412
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1111/cge.13635
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