Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition

OBJECTIVES: The purpose of this study was to examine parental preferences for researchers accessing their child’s electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD...

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Detalhes bibliográficos
Publicado no:Value Health
Main Authors: Raspa, Melissa, Paquin, Ryan S., Brown, Derek S., Andrews, Sara, Edwards, Anne, Moultrie, Rebecca, Wagner, Laura, Frisch, MaryKate, Turner-Brown, Lauren, Wheeler, Anne C.
Formato: Artigo
Idioma:Inglês
Publicado em: 2020
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Article
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC7701359/
https://ncbi.nlm.nih.gov/pubmed/33248520
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.jval.2020.06.016
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