Zobrazeno 1 - 10
of 28
pro vyhledávání: '"Sarah K. Savage"'
Publikováno v:
Molecular Genetics & Genomic Medicine, Vol 12, Iss 5, Pp n/a-n/a (2024)
Abstract Background Trisomy 20p is a rare genetic condition caused by a duplication of the short arm of chromosome 20. Methods We employed clinical observation and molecular genetic testing (SNP microarray), to study identical twin males with an unkn
Externí odkaz:
https://doaj.org/article/1083c9a7fcfb436c9f73523afc8725b6
Autor:
Nicole L. Walters, Zoe T. Lindsey-Mills, Andrew Brangan, Sarah K. Savage, Tara J. Schmidlen, Kelly M. Morgan, Eric P. Tricou, Megan M. Betts, Laney K. Jones, Amy C. Sturm, Gemme Campbell-Salome
Publikováno v:
PEC Innovation, Vol 2, Iss , Pp 100134- (2023)
Objective: To assess use of two web-based conversational agents, the Family Sharing Chatbot (FSC) and One Month Chatbot (OMC), by individuals with familial hypercholesterolemia (FH). Methods: FSC and OMC were sent using an opt-out methodology to a co
Externí odkaz:
https://doaj.org/article/4f5ef3314c2841cca458a381cb9d2e1f
Autor:
Debra J. H. Mathews, Sonja I. Ziniel, Noelle Huntington, Sarah K. Savage, Ingrid A. Holm, Kurt D. Christensen, Phoebe B. Mitchell, Elissa R. Weitzman, Robert C. Green
Publikováno v:
J Empir Res Hum Res Ethics
The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and in
Autor:
Sarah K. Savage, Sonja I. Ziniel, Ingrid A. Holm, Kurt D. Christensen, Elissa R. Weitzman, Robert C. Green, Cara N. Cacioppo, Phoebe L. Bacon, Noelle Huntington
Publikováno v:
Journal of Empirical Research on Human Research Ethics. 12:97-106
Discussions about disclosing individual genetic research results include calls to consider participants’ preferences. In this study, parents of Boston Children’s Hospital patients set preferences for disclosure based on disease preventability and
Autor:
Sarah K. Savage, Kurt D. Christensen, Sonja I. Ziniel, Robert C. Green, Phoebe L. Bacon, Elissa R. Weitzman, Ingrid A. Holm, Noelle Huntington, Brittany R. Iles
Publikováno v:
Journal of Empirical Research on Human Research Ethics. 10:414-426
The perceived benefit of return of individual research results (IRRs) in accordance to participants’ preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability a
Autor:
Ingrid A. Holm, Sarah K. Savage, Joan M. Stoler, Catherine A. Brownstein, Sonja I. Ziniel, David M. Margulies
Publikováno v:
Personalized Medicine. 11:569-579
Aim: To assess clinicians’ and researchers’ past, current and anticipated future use of next-generation sequencing (NGS) and anticipated needs for support. Materials & methods: A web-based survey was conducted at Boston Children’s Hospital. Res
Autor:
Robert C. Green, Patrick L. Taylor, Ingrid A. Holm, Noelle Huntington, Sarah K. Savage, Sonja I. Ziniel, Elissa R. Weitzman, Jonathan G. Amatruda
Publikováno v:
Public Health Genomics. 17:105-114
Background: The aim of this study was to ascertain parental preferences for the return of genetic research results on themselves and their children and their choices for genetic research results to receive. Methods: A mail survey was sent to 6,874 fa
Autor:
Sarah K. Savage, Catherine Clinton, Sonja I. Ziniel, Patrick L. Taylor, Erin D. Harris, Ingrid A. Holm, Jonathan G. Amatruda, Robert C. Green, Noelle Huntington
Publikováno v:
Genetics in Medicine. 14:330-337
Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which
Autor:
Sarah K. Savage, Kurt D. Christensen, Sonja I. Ziniel, Cara N. Cacioppo, Elissa R. Weitzman, Phoebe L. Bacon, Liam S. Conway-Pearson, Ingrid A. Holm, Noelle Huntington, Robert C. Green
Publikováno v:
Genetics in medicine : official journal of the American College of Medical Genetics
Purpose Family health history is often collected through single-item queries that ask patients whether or not their family members are affected by certain conditions. The specific wording of these queries may affect what individuals report. Methods P
Autor:
Erin D. Harris, Noelle Huntington, Sarah K. Savage, Robert C. Green, Ingrid A. Holm, Sonja I. Ziniel, Phoebe L. Bacon, Elissa R. Weitzman
Publikováno v:
Journal of empirical research on human research ethics : JERHRE. 10(2)
Understanding participants’ preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitiv