scholarly journals Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience

2018 ◽  
Vol 6 (6) ◽  
pp. 898-909 ◽  
Author(s):  
Kathryn M. Porter ◽  
Tia L. Kauffman ◽  
Barbara A. Koenig ◽  
Katie L. Lewis ◽  
Heidi L. Rehm ◽  
...  
Keyword(s):  
Carrier Testing ◽  
Exploratory Research ◽  
Translational Genomics ◽  
Clinical Sequencing ◽  
Genomics Research ◽  
Results Disclosure ◽  
Research Consortium

Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned

2021 ◽  
Vol 18 (5) ◽  
pp. 441-454
Author(s):  
Nangel M Lindberg ◽  
Amanda M Gutierrez ◽  
Kathleen F Mittendorf ◽  
Michelle A Ramos ◽  
Beatriz Anguiano ◽  
...  
Keyword(s):  
Underserved Populations ◽  
Lessons Learned ◽  
Spanish Speakers ◽  
Return Of Results ◽  
Sufficient Time ◽  
Clinical Sequencing ◽  
Study Materials ◽  
Genomics Research ◽  
The Usa ◽  
Research Consortium

Aim: To increase Spanish speakers' representation in genomics research, accessible study materials on genetic topics must be made available in Spanish. Materials & methods: The Clinical Sequencing Evidence-Generating Research consortium is evaluating genome sequencing for underserved populations. All sites needed Spanish translation of recruitment materials, surveys and return of results. Results: We describe our process for translating site-specific materials, as well as shared measures across sites, to inform future efforts to engage Spanish speakers in research. Conclusion: In translating and adapting study materials for roughly 1000 Spanish speakers across the USA, and harmonizing translated measures across diverse sites, we overcame numerous challenges. Translation should be performed by professionals. Studies must allocate sufficient time, effort and budget to translate and adapt participant materials.

scholarly journals Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium

2019 ◽  
Vol 16 (4) ◽  
pp. 325-333 ◽  
Author(s):  
Joon-Ho Yu ◽  
Paul S Appelbaum ◽  
Kyle B Brothers ◽  
Steven Joffe ◽  
Tia L Kauffman ◽  
...  
Keyword(s):  
Genome Sequencing ◽  
Exploratory Research ◽  
Clinical Sequencing ◽  
Research Consortium ◽  
Clinical Genome Sequencing

scholarly journals Performance of ACMG-AMP Variant-Interpretation Guidelines among Nine Laboratories in the Clinical Sequencing Exploratory Research Consortium

2016 ◽  
Vol 99 (1) ◽  
pp. 247 ◽  
Author(s):  
Laura M. Amendola ◽  
Gail P. Jarvik ◽  
Michael C. Leo ◽  
Heather M. McLaughlin ◽  
Yassmine Akkari ◽  
...  
Keyword(s):  
Exploratory Research ◽  
Variant Interpretation ◽  
Clinical Sequencing ◽  
Research Consortium

scholarly journals Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

2016 ◽  
Vol 99 (1) ◽  
pp. 246 ◽  
Author(s):  
Robert C. Green ◽  
Katrina A.B. Goddard ◽  
Gail P. Jarvik ◽  
Laura M. Amendola ◽  
Paul S. Appelbaum ◽  
...  
Keyword(s):  
Evidence Based Practice ◽  
Genomic Medicine ◽  
Evidence Based ◽  
Exploratory Research ◽  
Clinical Sequencing ◽  
Research Consortium

scholarly journals Performance of ACMG-AMP Variant-Interpretation Guidelines among Nine Laboratories in the Clinical Sequencing Exploratory Research Consortium

2016 ◽  
Vol 98 (6) ◽  
pp. 1067-1076 ◽  
Author(s):  
Laura M. Amendola ◽  
Gail P. Jarvik ◽  
Michael C. Leo ◽  
Heather M. McLaughlin ◽  
Yassmine Akkari ◽  
...  
Keyword(s):  
Exploratory Research ◽  
Variant Interpretation ◽  
Clinical Sequencing ◽  
Research Consortium

scholarly journals Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

2016 ◽  
Vol 98 (6) ◽  
pp. 1051-1066 ◽  
Author(s):  
Robert C. Green ◽  
Katrina A.B. Goddard ◽  
Gail P. Jarvik ◽  
Laura M. Amendola ◽  
Paul S. Appelbaum ◽  
...  
Keyword(s):  
Evidence Based Practice ◽  
Genomic Medicine ◽  
Evidence Based ◽  
Exploratory Research ◽  
Clinical Sequencing ◽  
Research Consortium

scholarly journals Motivators for participation in a whole-genome sequencing study: implications for translational genomics research

2011 ◽  
Vol 19 (12) ◽  
pp. 1213-1217 ◽  
Author(s):  
Flavia M Facio ◽  
Stephanie Brooks ◽  
Johanna Loewenstein ◽  
Susannah Green ◽  
Leslie G Biesecker ◽  
...  
Keyword(s):  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Whole Genome ◽  
Translational Genomics ◽  
Genomics Research
Sign in / Sign up

Export Citation Format

Share Document