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Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.
Value Health. 2020 Dec;23(12):1639-1652. doi: 10.1016/j.jval.2020.06.016. Epub 2020 Oct 26.
Value Health. 2020.
PMID: 33248520
Free PMC article.
Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.
Raspa M, Moultrie R, Wagner L, Edwards A, Andrews S, Frisch MK, Turner-Brown L, Wheeler A.
Raspa M, et al.
J Med Internet Res. 2020 May 21;22(5):e16734. doi: 10.2196/16734.
J Med Internet Res. 2020.
PMID: 32436848
Free PMC article.
Review.
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Preferences for the research use of electronic health records among young adults with fragile X syndrome or autism spectrum disorder.
Wagner L, Frisch M, Turner-Brown L, Andrews S, Edwards A, Moultrie R, Alvarez Rivas A, Wheeler A, Raspa M.
Wagner L, et al.
Disabil Health J. 2020 Oct;13(4):100927. doi: 10.1016/j.dhjo.2020.100927. Epub 2020 Apr 8.
Disabil Health J. 2020.
PMID: 32360031
Free PMC article.
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"Just tell me what's going on": The views of parents of children with genetic conditions regarding the research use of their child's electronic health record.
Andrews SM, Raspa M, Edwards A, Moultrie R, Turner-Brown L, Wagner L, Alvarez Rivas A, Frisch MK, Wheeler AC.
Andrews SM, et al.
J Am Med Inform Assoc. 2020 Mar 1;27(3):429-436. doi: 10.1093/jamia/ocz208.
J Am Med Inform Assoc. 2020.
PMID: 31913479
Free PMC article.
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